Tanner's Journey

The Ring

2012-02-26T12:25:00.001-06:00

It's official. Tanner has given Cearra an engagement ring. It's my old ring given to me by Tanner's father many years ago that I had tucked away in a safe place.

I know they are young and have a lot in front of them, but they are so crazy about each other. I debated long and hard before I gave it to them. I took into consideration their youth, the fact that they've only been together six months, all the obstacles and hurdles they will face - and then I stopped and thought about all the obstacles Tanner has already faced.

Six months of daily chemotherapy, two stem cell transplants, and two years of weekly chemotherapy (with no end in sight at this point) - and a future lived with Multiple Myeloma. I want him to experience life to the fullest. I want him to have happy moments....

So, it's official. Tanner and Cearra are engaged.

I am here again, in a familar place feeling something I've felt before, and wondering why... But, I'm glad I have a second chance at it, a third, a fourth... and I know that if I need another chance, I'll get it... You stumble, get up, and go again. This is life... and I'm still here...

As a Family

2012-02-22T09:39:00.000-06:00

Do you know how much a mother loves her child?

I was fifteen when my oldest brother was killed and I watched what it did to my mother. My other brothers and I lived with what it did to my mother. It hurt my dad terribly also, but the day Dewane was killed altered my mother from that day forward. She was never the same - and the day, many years later, when we had to decide to take her off life support, my brothers and I knew she would be relieved, at that point, to be able to let go and move on. She loved all her children, but losing one of them destroyed something in her. Part of my mother died with Dewane.

I loved my brother so much. He was my hero growing up. The oldest boy who teased me, picked out my favorite dress for me when I was in the third grade, who stayed home the night of my first date and took pictures with me - and then came and opened the car door and made me get out when that boyfriend brought me home and decided to kiss me in the car before walking me to the door. I loved him so and I mourned him deeply. I still think of him daily (and it's been 35 years since he died) but I never truly grasped the pain my mom must have felt until I had my first son. I talked to her one day after Trevor was born. I told her I didn't understand how deeply it was possible to love until I had my son and that I was sorry for not understanding how much Dewane's death hurt her. I expressed to her that I didn't think that I would ever be able to love someone as much as I loved Trevor. She told me that I would. She told me that if I ever had another child, I would love him as much as my first son. She told me she was sorry for ever making me doubt her love and that she loved all of her children equally. Losing any one of us would have hurt her to the same degree as losing Dewane.

As usual, my mother was right. Tanner was born and I loved him immediately with the same mother's love I feel for Trevor. So, how much does a mother love her child? Equally and overwhelmingly...

The day Trevor was sent to a locked down drug treatment facility at the young age of 17, I thought the pain would destroy me... But we survived. As a family we all survived.

The day Tanner was diagnosed with cancer at the young age of 17, I thought the pain would destroy me... But it's been two years - seven months... and we are surviving. As a family we are surviving.

I love my sons. I want them to feel joy, love, happiness... I want them to experience all the best life has to offer. I can't live their lives for them. I can only let them go to live their own lives always confident in their mother's love.

Families are about love overcoming emotional torture... Matt Groening (The Simpsons)

Happy Valentine's Day

2012-02-15T14:26:00.002-06:00

Well, another Valentine's Day has come and gone. Not one of my favorite holidays, but this one wasn't too bad. Nice and quiet...

Tanner took Cearra out to the Cheese Cake Factory for lunch and then to the movies last night. They made a whole romantic day of it! Young love!!

I've been taking my medicines and my life has calmed down somewhat, so things with me are better right now. Cross your fingers!

I went to Paris, TX this past weekend. Aunt Tincey was there and she is nearly all healed from her wreck. I asked her if she thought she would ever drive again, and she said she's already driving - though she was so stressed the first time behind the wheel that her shoulders hurt. We all went out to eat with my Uncle Little Boy (Doyle) for his birthday and it was such a nice time seeing everyone once again. It's funny how much time can pass between visits with extended family.

Everything with Tanner's health is sailing along calmly at the moment and he doesn't see a doctor again until March 2nd so right now, he's just having his weekly chemo appointments. He had his full body scan, but we won't get the results until the visit in March. I tell myself if anything unusual had shown up, they would have called in him to see the doctor. So, I guess that old saying applies, "no news is good news".

"One forgives to the degree that one loves..."

François Duc de la Rochefoucauld

Happy Valentine's Day!

First Appt with Dr. Short

2012-02-07T09:17:00.001-06:00

Well, it was my turn to have a first doctor's visit yesterday. It's been over two years since I've been to a doctor. Not having health insurance, doctor's visits are almost a "luxury" that I've denied myself for several years now.

Two years ago, I went to see Dr. McDougal and explained to him about Tanner's diagnosis and my struggles in trying to return to a "new normal" life, the thoughts of depression I was dealing with, and my inability to sleep through most nights. He told me, "You aren't depressed. Look at you. You've lost weight, you're taking care of yourself, you're going to work. You aren't depressed. This is just life and you have to live it."

Well I've been trying to "live it" for a couple of more years now - and I'm still not sleeping through the night. I take Tylenol PM or Benadryl or Melatonin - and nothing gives me beyond 4-5 hours of continuous sleep.

I "function" for a while and then I start quietly falling apart again... and it's been years.

People talk to me and give me their advice... "You have to let go of what you can't control"... "You have to look on the bright side"... "You just have to put your faith in God"... All good advice. All things I know. Advice I wish I could follow, but I am who I am and that's a person who has always had depression issues.

My childhood... My childhood had "issues" and I've been plagued with migraines all my life. I carry my worries and fears inside. I try to lean on my friends, but when "it" starts taking me over, I pull away and I internalize.

I was fifteen when my oldest brother was killed, 27 when my mother went into a coma and slipped away, in my thirties when I lost my dad, around 40 when my youngest brother lost his battle with drug addiction and shot and killed himself, I've watched my own son battle addictions and endured him being locked up for years, I've loved and lost, I've trusted and been betrayed, I have a son with incurable cancer.

It's true. This is all just "life"... It's all things many many people live with and endure all around me. I'm not special or different than most people I know... Everyone has issues in their life. No one has a "perfect" existence.

I went to my cousin's house this weekend and had such a wonderful time, and underneath it all is "everything"... Everything pressing down on me. A constant presence in my life. I talked to Kathy about it and she understood. She looked at me with tears in her eyes and she understood... because she too lives with "depression" as a constant companion always following in her footsteps.

I function. I put on my makeup and I dress up and I go to work. I go out and laugh and have fun - but then I also struggle.

So yesterday, I went to another doctor and I talked with her and she understood and I'm getting some help.

There's been a rash on the back of my right shoulder and it's been there for more than six months. Sometimes it's painful and flares up. Sometimes I can get it under control by using hydrocortisone cream and Aveeno baths, but it's been there for months and months. The doctor told me she thinks it's shingles and is caused by stress so here in a bit, I'll go to the drugstore and pick up my prescriptions and I'll hope for some relief.

I will be okay. I know everything isn't hopeless. I know there are many good and positive things in my life. My oldest son seems to be winning the war with his addictions at this point in time and has a good job with a hopeful future. Tanner remains in remission and is building a life for himself - and is in love. I have beautiful grandchildren that I love with all my heart. I have friends who are always there for me.

Things will be okay and I'll continue to "live"... I just needed to seek some help.

"What do you do when you first learn to swim? You make mistakes do you not? And what happens? You make other mistakes, and when you make all the mistakes you possibly can without drowning - and some of them many times over - what do you find? That you can swim"...Alfred Adler

First Appt with Dr. Asad

2012-01-31T22:03:00.004-06:00

We met Dr. Asad on Friday and he was quite a small man, a little shorter than me (in high heeled black cowboy boots) and looked like he was in his thirties. He said that he had gone to a Multiple Myeloma conference the night before and talked to the presenter from California. He asked him who his youngest MM patient was and told them he "had them beat" with Tanner. He said that they were interested in his case and would be available for assistance in the future if needed.

He assured us that Tanner's lab work indicated no active Multiple Myeloma at all and I told him that was good to hear but I also explained to him that when Tanner was first diagnosed in 2009, Dr. Daniels at Cook's Hematology told me that if they were just looking at Tanner's lab work, there was nothing there to indicate cancer at all - and that the PA in Arkansas told me that they didn't track Tanner solely by labwork - that they also needed to track the lesions (which is why they had to fight with the insurance company about the need for MRI's and PET Scans so often). Dr. Asad said that he would check with Dr. Berryman in Dallas and see what he recommended but that he felt sure if anything in Tanner's case was changing, it would show up in his blood work that's being taken every week.

He did mention that Tanner's platelet count has been coming down for the last three weeks and that if it continues on a downward spiral, they would need to change his treatment by either lowering the dosage of Velcade and Revlimid - or possibly doing chemo every two weeks instead of every week. Tanner told him he liked the idea of going to treatment every two weeks.

Think about it, Tanner has been having chemo since August, 2009! For six months he had it daily (except for a couple of two week breaks) and then every week for the last two years. How long can you pump poison into someone's body and they not have a reaction? He's done unbelievably well - which is why the doctors say the don't know how long he will be on chemo... Being so young, he's in "uncharted territory".

He started a "job" selling air purification systems and did his first presentation with me so that he could practice. I guess I was a little "negative" when he first told me about it because I told him that it was going to be almost impossible to make such a job work out... that many people try and fail at these sorts of things. I had to call him later and tell him that I was sorry for not being more positive, and that I just knew it was something I, personally, could never do because of my shyness and fear of speaking in front of others.

He came over Saturday afternoon and did the presentation and he was pretty rough - but I was so proud of him. He's almost fearless. He'll get out there and try anything - and he sold a system over the weekend!! If nothing else, it will be a good learning experience for him and will be a job he can list on his resume.

I had a rough time this last weekend. Sometimes I can't control how emotional I become and Saturday I was a basket case. I texted Trevor and Tanner and let them know, and then I just turned off my phones and shut down my computer - and "unplugged" for a while. I slept on the couch and watched the Food Network and read and was just on my own and out of touch for a while. I needed some ALONE time with no beeps or rings... some time to think and reflect - and rest.

Today was a better day, and that's a good thing. I'm tired, deep down to my soul, and ready for better days.

We do not live an equal life, but one of contrasts and patchwork; now a little joy, then a sorrow, now a sin, then a generous or brave action...Ralph Waldo Emerson

Mr. Walker

2012-01-24T15:39:00.004-06:00

I took Tanner to Texas Oncology last Friday for his 12:30 p.m. appointment for labs and chemo and the receptionist told him that they had him down for a 2:00 p.m. appointment. I told her, "No, huh uh. Not this time, his appointment is at 12:30" and explained that I had the appointment card myself. This is the second week in a row that we've gotten there and they've told Tanner that his appointment was at a different time than he was told. She asked me if I had the appointment card to prove what time we were told and I ended up calling work and having one of the ladies take a picture of the card. The receptionist took it back to triage and they went ahead and took Tanner back for his chemo. We ended up being there for about 1-1/2 hours. I guess we'll keep the appointment cards with us when we go to the appointments since they seem to have a hard time keeping track of the actual times.

Other than the issues over the appointment times for his first two visits, he seems to like going to the new Oncology Center. They came to the doors and called out for "Mr. Walker" and Tanner went back by himself. When he came out he was laughing and said that they called "Mr. Walker" back behind the curtains and him and an older man both went. He told the older man he could have the chair and when the nurse came in she asked the old man where he wanted his shot and the guy started pulling his pants down. Tanner told her he wanted his in the stomach and she said "Wait a minute. You two aren't together?" Come to find out they were both Robert Walker and were both having chemo on the same day. Tanner said he was glad that the man had on his "tighty-whities". LOL!

He stepped on and broke the screen of his cell phone last week so we've been out of touch for most of the weekend. Sunday is the first day that I can ever remember that we haven't communicated with each other at all. He came over last night to get his replacement phone and he and Cearra both seem to be really happy. She's loving cosmotology school - Tanner's loving her - and not living at home (it seems). He was telling me that he got a job with Cearra's sister and that it's selling some kind of air cleaner and humidity systems in people's houses. I was trying to tell him how nearly impossible those types of jobs are but he was going on and on about how they pay you a salary even if you don't sell anything. I figure, if nothing else, it will be a good learning experience for him - and maybe something he can put on a resume later. Most times, they just have to learn on their own. At least he's outgoing and not as introverted as his mother. I would have never even considered such a job in a million years.

Monday he's scheduled for his bone survey and we are both anxious to see the results since he hasn't had one perfomed since he was first diagnosed in August, 2009. At that time he had hundreds of lesions all throughout his body. His whole skeletal frame lit up nearly all black. It will be interesting to see how he looks after 2-1/2 years of chemo. Hopefully, it will look much clearer than the original scans taken when they first discovered the cancer.

Myself, I'm hanging in there. It's an adjustment being on my own. Some days I'm okay, and some days I'm not. Some days I realize the benefits - and some days I struggle deciding which way my future needs to head...

Time doesn't always heal; it just breathes and swallows memories like the seasons change - sending showers; beating flowers into the mud. And nothing is forever in this place. Nothing but the way my heart fits into your hands; the held breath of hope.

A Journey

2012-01-18T10:53:00.003-06:00

The beginning

A Day of Tests - With Dad and Janet

With Dr. Barlogie - A Hero

Ready to Start

Chemo and Collection

Infection

Haircut

Long Days

Even More Chemo

Meds

Deep Thoughts

Stem Cell Transplant

So Sick

A Better Day with Granny

Remission

Returning to "Normal"

Make A Wish

Living

A Close Call

2012-01-16T16:35:00.000-06:00

Friday was Tanner’s first visit with Dr. Asad at Texas Oncology and he told me the appointment was at 3 p.m. We arrived and the receptionist told us his appointment was actually at 1 p.m. and that Dr. Asad had already left for the day. Tanner said he could have sworn they told him 3 and that was what he had written down.

Fortunately, the receptionist talked to Brian, the PA, and they had already obtained his chemo medications and decided to go ahead and see him.

The PA is a very nice, (very tall), man who sat and talked with us for quite a while. Of course, they expressed their amazement about the fact that Tanner has Multiple Myeloma at such a young age and Brian also told us that he was surprised that he was still on “full strength” chemo after two years. He said that most patients are on a “reduced maintenance dose” but that Tanner is still taking full strength Velcade and Revlimid.

Tanner told him that he was, “like an experiment” and Brian responded that yes, he was in fact “truly an experiment” and that at there are no written protocols or standard of treatment for someone his age with Multiple Myeloma. He expressed curiosity about how long “they” planned on keeping Tanner on maintenance, and we told him Dr. Berryman told us that since Tanner was “tolerating chemo so well” the plans for continued treatments are “indefinite” at this time.

Brian also asked when the last time Tanner had undergone a skeletal survey - and looking through the records, only found the one taken in 2009 when he was first diagnosed. He recommended that another survey be taken in the near future. Tanner and I both will be anxious to see the difference in this full body x-ray versus the one taken in 2009 where they first found the “innumerable” lesions in the bones all throughout Tanner’s body.

The appointment flowed well and it was so quiet - and we were in and out within two hours! If the weekly visits continue like the first one did, Tanner will appreciate the difference in being seen in an adult practice versus the children’s practice (which, more times than not, was usually quite loud and chaotic with all the children).

So, all in all, we were both impressed with Texas Oncology and look forward to actually meeting Dr. Asad. Next week’s appointment is on Friday and will be for just labwork and chemo and then the next Friday, (1/27/2012) he will finally see Dr. Asad.

Yesterday evening we had some “family time” and I took the boys and Cearra out to eat and to the movies to see Sherlock Holmes. It was a nice evening and the boys (and Cearra) all seemed very happy.

Before I went to bed last night I saw on Facebook that my Aunt Tincey in Arkansas was in a bad auto accident but came through with only cuts and bruises. I called up there and talked to her daughter, Julie, and was told that my aunt was on the way to Paris to see her brother and had made it as far as Texarkana when another car cut her off. Aunt Tincey was doing near 70 and when she slammed on the brakes and swerved, she lost control of her SUV and it flipped two or three times before it came to a stop and the vehicle was totaled.

Julie said when they made it to the hospital, the doctor told them that Aunt Tincey could go on home if she desired but that she “would hurt in places where she didn’t know she could hurt”.

I kept thinking about her when I was trying to go to sleep last night and this feeling of fear came over me. Aunt Tincey called me a few days ago and left a message and I had been too “busy” to call her back. Then in the blink of an eye, we could have lost her. I thought about how she must have felt in those moments when her SUV was flipping over and I became so afraid of how close we came to losing her yesterday. She was SO good to me and Tanner those six months we lived in Arkansas, but even more than that, she's played such a vital role in my whole life. I love her so much... Sleep was a long time coming…

You never know what each day is going to bring and we (I) all get so bogged down in the negatives. That needs to stop. We have to stop and appreciate what we have every day. We have to let those that we love know how much they mean to us. We need to stop waiting. What if we don’t have tomorrow?

All's Calm

2012-01-09T15:52:00.007-06:00

All seems to be calm on the homefront (knock on wood).

Tanner came into work with me on Friday and Monday (and came to my house on Saturday and Sunday) helping us out with putting inserts in - and labels on - our company newsletters. Today he's had to stay all day so he's gotten a taste of what it's like to work a full day.

I've heard him sigh fairly loudly and few times, and stand to stretch his back, so I know he's probably pretty worn out. There's something about processing the newsletters that's really hard on your back.

I went in there earlier and he asked me if we had the heat on and said that he was sweating - but felt cold. I felt of his forehead and he was really warm and clammy and he says that he's nauseated and won't eat his lunch. I know there's a stomach virus going around so I'm hoping that he's not about to get sick.

Things seem to be going well with him living with Cearra and her mom. I've seen him every day this weekend and they both seem really happy and content. Cearra has started Ogle School and told me that she performed her first haircut the other day and that her teacher told her she did really well. She says that she loves it there!

Tanner asked me what I thought of him going down there and talking to them about attending classes himself. He said he's always been good at cutting hair - and often helps Cearra with coloring her hair. I told him that I had no problem with him attending beauty school at all but that my biggest concern was that most salons don't have insurance and that's why I've tried to steer him towards industries that (usually) provide some benefits (like computer technology).

At this point, any school that he can settle on will be okay with me. He's going to be 20 in April and needs to get serious about what kind of career he wants to pursue.

He and Cearra went to look at wedding chapels the other day so I'm beginning to believe this engagement might not be as long as I thought it was going to be. They've had each other's names tattooed on their bodies (Something I told them they would regret one of these days) so I guess they might as well go ahead and get married... As I said, they seem very happy together at this point.

I had my four year old granddaughter, Kayleigh, over to stay with me this past weekend and it went so well! She hasn't stayed with me since she was about a year old (she lives in Brownwood with her mom) so I wasn't sure how well it would go. We had a lot of fun!! We went for several walks, went to play with her 4 year old cousin Eva, went to the park, and played in the children's playgound at Chic-Fil-A (where Kayleigh was kicked in the face and ended up with a bloody nose).

It was a good, fairly stress free, weekend.... One that I needed.

This coming Friday Tanner goes to see the new doctor at Texas Oncology. I'm looking forward to meeting Dr. Asad and see what he has to say about Tanner's treatment - though in reality I don't think anything is going to change except the location since he's going to be taking direction from Dr. Berryman in Dallas - just like Dr. Albritton did for the last couple of years.

I guess if Tanner is serious about getting married, he should be going to an adult Oncologist instead of a children's practice!

We are not the same persons this year as last; nor are those we love. It is a happy chance that we, changing, continue to love a changed person... William Sumerset Maugham

Settling Into A New Year

2012-01-03T11:49:00.005-06:00

Well here we are at the beginning of a fresh new year. So many possibilities for decisions and directions...

Tanner is still living with Cearra's family and I spent some time with him last Thursday when i took him to his last appointment at Cook's Oncology. I asked him how things were going and he paused, looked at me, and said that he didn't want to say that things were "better". I asked, "You mean things are easier?" His response was "Yes."

I know what he meant. He doesn't have to answer to me anymore. At least not to the point that he was having to answer while living in my home. We've spoken or texted every day since he's left because I have to hear from each of my boys on a daily basis. I just have to know that they are ok. But what I've found as the days have passed is that I'm starting to relax too. It's beginning to become "easier" for me as time goes by.

I don't have to deal with so many young people coming and going from my home at all hours. I don't have to wake up during the night and go searching through the house to see if he's home - and then lie awake listening for him to return. I can sit in the living room and watch a movie and don't have to hide out in my bedroom. I've found that, while I still worry about him, it's not a constant presence in my life. Now I understand what my mom meant when she told me, "Sometimes it's easier not knowing." As long as I hear from both boys at least once a day, I find that I'm doing ok. I've told him that I am still always, always there for him when it comes to his health, appointments, and school.

We met with Dr. Albritton on Thursday and said our goodbyes and he had his last chemo treatment in their clinic. Tanner will be seen by a Dr. Dean Asad at Texas Oncology in the Fort Worth Medical District starting this week - and will remain under the supervision of Dr. Berryman over in Dallas.

I was talking with a friend the other day and he was asking about Tanner's relationship with Cearra and I told him they are just completely crazy about each other - and while I worry about them being so much in love at such a young age, Tanner needs to be allowed the room to experience these feelings. We don't know what his future is going to hold and I want him to have as many positive life experiences as he can.

Dr. Albritton had her final talk with Tanner and told him how she understand that many young adults with cancer try to live life to the fullest. She explained that they seem to often have a "what do I have to lose" attitude and that she wants him to try and always stop and think of consequences. She told him to remember there are many high adrenalin activities he can participate in that can add excitement to his life - and are still "good decisions". That's one of the things I will miss the most about Dr. A, she has dedicated her practice to the young adults who are so often overlooked. She came to the waiting room and sat and talked with me for a while and told me that she thought Tanner was okay living away from home and that I needed to focus on getting myself strong because, as she said, "With Multiple Myeloma, he's going to need you one of these days, and then he's going to need you again." Both of us need to live our lives to the fullest for as long as we can.

I'm thinking of going ahead and putting my house on the market. It's a three bedroom on a half acre lot and I really don't want to have to keep maintaining a large yard - and even the upkeep on a house can become overwhelming. I think it's time to let go and move into a small apartment. I just need to do a few things to the house before I can list it for sale.

Friday afternoon when I came home from work, my front door was unlocked, Tanner's bedroom door was open, and the hall light was on. My thinking was that he had come home during the day and picked up some more of his things. I looked around and didn't notice anything out of place so I locked up and went to run my errands. I checked in with Tanner to remind him that he always needs to lock the front door and he told me he hadn't been to my house. I called Trevor and he too told me he hadn't been by (and he doesn't have a key). I thought that surely I didn't go off for work that morning and left my door unlocked and the lights on and bedroom door open. When I got back to the house I looked around and noticed that half the movies on the rack by the front door were gone.

The only thing I can think is that someone that Tanner knows knew where he used to hide his key and possibly had a spare key made. None of the windows were broken and there was no sign of forced entry so, needless to say, I became concerned about who out there might have a key to my home. I've slept on the couch through the weekend so I could hear if anyone should try to come through the door and last night one of my cousins came over and changed the locks.

I think it's time to move on. Like I said, it's a new year with lots of decisions and directions...

Contemplation often makes life miserable. We should act more, think less, and stop watching ourselves live... Chamfort

Another Christmas

2011-12-25T12:25:00.004-06:00

It's Christmas Day...

The boys and I had Christmas with Granny Jane and Pop Jerry and some extended family on Friday. Yesterday afternoon Trevor came in from Weatherford and he, I, Tanner, and Cearra all had our Christmas lunch and exchanged gifts. Then last night I went out for a drink and a few laughs and unwound from the day.

Today I'm cooking and preparing for one more Christmas tonight and then things should settle down and I can start focusing on the new year.

Now then, on to the news... Tanner has moved out and is living with his girlfriend's family. Their home is just about five miles from my house but his leaving is an adjustment for me - some good and some bad - but an adjustment all the same.

See, Tanner is a good "kid" but he's 19, going on 20, and it's not all easy being his mom - as it's not easy, I'm sure, for him to live and deal with his issues either.

Having and raising children is not something to be taken lightly. The capacity for a child to hurt his parents is overwhelming - and me and my boys have been through just about everything. When you lay down your rules, as a parent, you have to abide by the consequences when your rules aren't respected. So, with that said, it's been decided that Tanner is going to live with his girlfriend and her mom for a while and we'll see how things go.

He's been gone since last week and I'm getting used to being on my own. He came over for our family Christmas yesterday and told me he noticed that I had candles on the tub and I told him that yes, I've reclaimed my bathtub. I'm actually reclaiming my life.

When the boys dad and I divorced 12 years ago, it really threw my boys for a loop. Trevor struggled tremendously and our family went through one overwhelming issue after another with him for many years. Tanner saw it all and it was so hard on him and I always prayed that he wouldn't make the same mistakes, but, over time, he seemed to slip into some of the same bad behavior.. Then cancer... cancer.. cancer... entered his life and we endured that journey too - and are still fighting the battle for him to remain in remisison - but he's still a teenage boy with all the issues that entails.

As Dr. Albritton told me, there is no one more at risk than the young adult with cancer. They have cancer and then they also have all the same issues as other young adults - and very, very often they fall through the cracks. We are doing our best to make sure Tanner doesn't fall through the cracks.

Next Thursday we have one last visit with Dr. A at Cook's Oncology and then he's being transitioned over to the adult practice at Texas Oncology.

As much as I love Cook's and Dr. Albritton, I think it's going to be a good thing to move Tanner to the adult practice. They have never treated a patient with Multiple Myeloma at Cook's and, quite often, don't seem to understand what Tanner is dealing with much of the time in regards to the spasms he has in his back and hip.

After Christmas at Granny Jane and Pop Jerry's on Friday, Tanner went to the mall with Cearra and her mom and later he texted me that he was going to stay in (at their house - I guess his new home right now) because his back was hurting. Yesterday after we had our lunch and had opened our gifts, Cearra told me that while they were at the mall Tanner's back started spasming so badly he started crying and could hardly stand straight. She said that it scared her to death.

Dr. A is so focused on Tanner not falling back into his pattern of addiction to the pain medications, sometimes his pain isn't dealt with at all. She once told me, "He's going to have to deal with it because I'm not going to prescribe him pain medications". I'm hoping at an adult practice, a treatment can be settled on that will ease his pain - while controling the chance of falling back into a pattern of addiction.

Like I said, it's not easy being being a parent. Being a parent of a young adult with cancer is a far cry from "easy"... but I'm dealing.

He's texted or called every day since he's moved out and I'm becoming used to him not being here. I'm slowly working on building a life for myself outside of taking care of my sons.

I can only do the best I can do - but I can't control anyone... Sometimes not even myself. I'm working on accepting that things are the way they are and simply enjoy the moments that are good - and not worry about the bad until they actually arrive.

Life is life... good and bad... Enjoy the good while you can and try not to worry about the bad before it actually occurs.

So... Merry Christmas to us all. Here comes a new year.

To forgive is the highest, most beautiful form of love. In return you will receive untold peace and happiness... Robert Muller

Holiday Preparations

2011-12-18T12:03:00.009-06:00

Here we are smack dab in the middle of holiday preparations...

I know it's supposed to be the season of joy, but it's actually my least favorite time of year. I haven't gotten through a Christmas in years without shedding at least a few tears. I always think of the family that I've lost on the holidays... Mom, Dad, Memaw, Dewane, Brad, Aunt Bille, Uncle Big Boy, Earl, Kelson... I've had so much love, and so much grief in my life... I always miss the ones I've loved and lost the most, it seems, on the holidays.

Last year was absolutely the worst Christmas I've ever had but I plan on this year being a much better holiday. My thoughts are to keep it small and simple.

Yesterday, I spent the early part of the day with my friend Donna in Burleson and we shopped till we dropped. Then, in the evening I received my first (early) Christmas gift... It was the best gift anyone could have given me! Something I'll use and treasure every single day... So, it ended up being a wonderful day spent with those closest to me. I needed to have such a day. Today I'm spending wrapping gifts, and then I can relax and just wait for Christmas to arrive.

Tanner has been a little sick for the last couple of weeks with a cough and congestion. Since it has been dragging on so long, Dr. Albritton had a chest x-ray done at his appointment this week just to be sure he's not getting pneumonia - and everything looked ok. When he catches a cold, it's just harder for him to shake it off with his low immune system.

He's actually surprised me this past month with the news that he asked Cearra to marry him. I know... He's only 19 and she's just turning 18... Very young! The best thing is they know that they need to have a looooong engagement so that they both can finish school and get on their feet before they do anything as major as actually marry. I guess they just want to announce their commitment to each other.

They went shopping yesterday with Cearra's mother and checked out some rings. Tanner seemed a little shell shocked with the price so, hopefully, they realize the expense of marriage... of life in general... and will stay focued on school and finding jobs before they proceed further than just the promise they've made to each other at this point.

He's finished his finals at TCC and we'll see how his grades all turned out, but this next semester he's going to go on to the technical school to pursue a Microsoft Certification. As I mentioned before, he's ready to move on with an independent life (as is displayed by his desire to marry Cearra) and I'm ready to downsize and focus on a life of my own.

For the last couple of years I've let pain and worry overwhelm my whole existence, but no more... I'm determined to turn my life around. A new year is approaching and it will be a better year than the last two have been. New Years is a time for "resolutions" and I resolve that this next year will be a better year. A happier year...

The risk of love is loss, and the price of loss is grief - but the pain of grief is only a shadow when compared with the pain of never risking love...

A Weekend Trip

2011-12-11T18:40:00.003-06:00

There's not really a lot to report right now.

I got up Saturday morning before Tanner got out of bed and went to visit one of my cousins and then, when I got back home, he was gone. I packed and left to drive up to Paris for my Aunt Tincey's 80th birthday and then today, when I arrived back home, he's been gone with Cearra.

Now I'm about to go meet a friend for dinner and maybe, when I get home, I'll see him for a few minutes before bed... If not, maybe tomorrow. Such is our life...

I went out to dinner the other night and was telling my friend, just because Tanner has cancer doesn't mean that all the other problems faced by parents of teenagers are magically erased. He and I still have our issues and he still makes decisions I don't always agree with. We are both still struggling to find our way. He's battling for independence and I'm battling to let go...

Being the parent of a teenager isn't always easy... Being a teenager isn't easy either, I know... Add the fact that he has cancer and you can multiply both of our stress levels 100 fold.

He had finals this last week and he was pretty intense... I'm "me", with all that entails, and I was pretty stressed too. It wasn't a very good week for either one of us.

We've agreed that, in order to facilitate him getting on his feet sooner, he's going to consider going to a technical school this next semester where he can become Microsoft Certified after completing a nine month program. I think I'm going to ask for an afternoon off this next week to take him over to visit with the school and see what we would need to do to get him started. I told him he can still continue with his basic courses at TCC, but with this program he can, hopefully, find a job that he will be able to maintain with all of his health issues - making more than minimum wage at some fast food place.

He's ready to move on with his life and have an opportunity to move out of my house and we've decided to focus on getting him, hopefully, independent within the next year's time (he will be twenty in April and is ready to get out from under his mom's thumb) and I would like to put my house up for sale and find a small apartment for myself. He's ready to become independent and I'm ready to downsize and simplify.

I'm just so glad that he's remained in remission so that he has a chance to fulfill these dreams of independence. Two and a half years ago, we didn't know if he was going to have an opportunity to "move on with his life" and become an independent young man.

The birthday party for my Aunt Tincey was a lot of fun - and she was very surprised! I was able to see lots of family I haven't seen in years so I'm glad I took the opportunity to attend!

I don't know what Tanner and I would have done all those months in Arkansas without Aunt Tincey, Julie, and her kids!!

Waiting is painful. Forgetting is painful. But not knowing which to do is the worse kind of suffering... Paulo Coehlo

MM for Dummies

2011-12-05T14:00:00.002-06:00

http://mmfordummies.blogspot.com/2011/12/myeloma-mondays-42-tanner-age-17-from.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+MultipleMyelomaForDummies+%28multiple+myeloma+for+dummies%29

Still In Remission

2011-12-04T16:41:00.003-06:00

We went and saw Dr. Berryman on Friday and he said that Tanner's lab work looks good and that there's no sign of active cancer. It's always such a relief to have the confirmation from the doctor that everything is still okay. The nerves always take over, to some degree, when we are waiting to hear the results of the reports even though, if something was changing, Tanner's weekly labwork should indicate the difference. I always remember that fateful day when they did the full body scan and discovered the hundreds of lesions, the Oncologist told us that if they were just going by bloodwork, Tanner seemed to be a completely healthy young man. Since that statement, I don't trust the weekly labwork to be our only indicator for how Tanner's cancer is proceeding.

He recommends that Tan continues with maintenance treatment as he's been doing for over two years now with no changes at this time and return to Dallas next March.

He said that the platelet count was a little lower than when we were there four months ago but I guess that's to be expected. Tanner has been undergoing chemotherapy for 28 months now. The first six months was daily chemo with only short occassional breaks and then for maintenance he's been taking the weekly treatments for more than two years now. Twenty-eight months of chemo...

They also ran labwork on Trevor to see if he's a match for Tanner but they have to wait to send it off until Monday so it will be a while before we get the results and discover if he's a stem cell match. Dr. Berryman said that MM is "prone to relapse" so, if Trevor is a match, he wants to go ahead and collect and have the cells frozen for future use if it should ever be needed.

He explained that if Tanner were to relapse, we would want to do something different than the treatment that has already been done in the past. He said that Tanner's own stem cells are the "flawed" cells that allowed him to get cancer in the first place. If he should ever need another transplant, he feels it would be beneficial to use his brother's cells rather than his own cells that were frozen in Arkansas.

We came home from the doctor's appointment and I packed up a backpack and went and spent the weekend with my cousin Kathy. It was going to be just an overnight visit but I ended up staying the whole weekend and just got back home this afternoon. It was a much needed break. Just what I needed... A chance to get away for a couple of days and let all my worries go for a while.

You can close your eyes to the things you do not want to see, but you cannot close your heart to the things you do not want to feel...

Good Days and Bad

2011-12-01T13:08:00.006-06:00

Good days and bad days... heck, good moments and bad moments... that's my life right now - and for most of the past two and a half years.

I'm getting stronger every day and learning to let go of worrying about things I can't control. I'm learning to get out of my own mind and actually participate in the world around me... At least that's what I'm trying to do.

I went to bed the other night and, as usual, that's when my mind really kicks into gear and the thoughts started going around and around in my head. Thoughts about some issues in my own personal life, Tanner - his life and cancer, Trevor - and all we've been through with him, my family that has slipped away - and I found myself curling into a fetal position with the weight of it all. Why do we curl up like a baby when we are in pain?

But... today is another day and I'm alive, Tanner is alive, Trevor is alive and we are all going to be okay today... Tomorrow will take care of itself... and tomorrow we head back to Dallas to see Dr. Berryman.

"They may forget what you said, but they will never forget how you made them feel"... Carl W. Buechner

A Good Thanksgiving

2011-11-27T11:18:00.001-06:00

All in all, it was a good Thanksgiving holiday. The boys and I went our separate ways on Thanksgiving with Tanner going to Cearra's family, Trevor with his dad and Janet, and me spending the majority of the day with Donna, Hillary, Paul and some of their family, but I think it ended up being a nice day for all of us.

Yesterday, I wasn't sure how the day was going to turn out since I was fighting off one of those "moods" early in the morning but it ended up being a very nice day. One of the nicest days I've had in a while. The boys, Cearra, and I all went to Granny Jane and Pop Jerry's house and had lunch. We spent the afternoon with them talking and laughing, and then last night I got to have mexican food. There's just something about Thanksgiving and all that turkey and ham. As soon as the holiday is over, I have this craving for mexican food! So I'm all good now!! I've had my turkey and dressing - and my chips and hot sauce!

I don't really know what all was said to Tanner at his doctor's appointment on Thursday. Dr. Albritten visited with him alone but I do know that she called a counselor while they were in the exam room together and scheduled him an appointment for next Thursday. The nurse told us he just has "too much to handle on his own" so I guess we'll see how he does with counseling. He told them he "doesn't like counselors" and they asked him to at least give it a try.

He's been taking his medicine like he should since the appointment so he's back on track in that regard. We just need to keep him there!

Love is like a friendship caught on fire. In the beginning a flame, very pretty, often hot and fierce, but still only light and flickering. As love grows older, our hearts mature and our love becomes as coal, deep-burning and unquenchable... Bruce Lee

Parting With Your Illusions

2011-11-26T10:49:00.002-06:00

Don't part with your illusions. When they are gone you may still exist, but you have ceased to live...

Mark Twain.

Big Boy Pants

2011-11-20T20:04:00.006-06:00

I went with Tanner to his doctor's appointment on Thursday and when Anita (Dr. Albritten's nurse) came in the room she was asking him her regular questions, one of which was how he was doing taking all of his medications. He glanced over at me and then told her, "Well, I take them when I think about it".

Her answer was, "Tanner, I already know" and she went on and explained to him that Caremark told them when Dr. Albritten attempted to call in his next round of Revlimid that Tanner had admitted to them that he has a bottle of medications that he still hasn't taken. She said that Dr. Albritten wasn't there in the office and she was going to talk to one of the other doctors but that she thought it just best that he doesn't try to take any more at this point and they would consider this his week of "rest" and then he could start a fresh new round next week.

She went out of the room and a minute later, Lisa, the "counselor" over the teenagers at Cook's Oncology came into the room and she was just generally talking with him as she always does and then she asked the same question about his medicines. When he gave her the same answer, she told him she was going to "come down hard on him" and she went on to explain to him about how hard it was going to make things if he relapses, how "tired of his medical stuff" he was going to get if he had to go through the aggressive chemotherapy all over again. She told him it would be much worse than the first time.

She asked him if he realized what happens if a person gets sick and the doctor prescribes an antibiotic and the patient only takes them every once in a while? She explained that the "illness" learns how to overcome the medication, to become resistant to the medication, and the patient becomes sick all over again. Sometimes even more ill than they were originally. She explained to him that the same thing can happen with cancer. She told him that she realized that he wants to be "normal" and "just like all the other teenagers" but that if he relapses things would be much, much harder on him.

They told him that they have a program through Cook's where the teenager can get a daily text that reminds them to take their medicines and when he goes to his appointment this next Wednesday morning they are going to set him up to receive the texts - and while we were sitting there, he sat a daily alarm on his phone to also give him another reminder.

He told Lisa and Anita that he was going to do better, that he was going to "put on his big boy pants" and commit to them that he would start taking his medications like they are prescribed and would show up for his weekly appointments.

We are going to get him another one of the weekly pill containers (the one we had broke) and I'm going to help him get organized and we'll leave it on the kitchen counter so that he sees it every time he goes to the refrigerator.

Their dad took Tanner, Cearra, and Trevor down to Clyde on Friday and they all visited with their grandfather. They fished, shot rifles, and had a great time. While they were gone, I took the opportunity to paint Tanner's room on Friday night and then Saturday I went down to the lakehouse in Palo Pinto and spent some time with my cousins. I think Tanner and I both just needed a short break this weekend and this next week we'll regroup and get back to working on getting him back on track with his treatment.

I can't begin to describe how hard it is on me as his mom to handle all of this... I really can only imagine how hard it is on Tanner to live with this disease.

I wish it had been me, instead of Tanner, who was diagnosed with Multiple Myeloma... but it wasn't... instead it struck my 17 year old son so now he's going to have to "put on his big boy pants" and deal with treatment for the rest of his life. Hopefully, with treatment, that life can be a long, long time.

Not A Good Day

2011-11-15T11:44:00.005-06:00

It's not a good day.

Tanner's girlfriend had a medical procedure yesterday and I knew most likely wouldn't feel like taking him to his doctor's appointment at 10 a.m. this morning so I told him that I would be taking him. I woke up this morning to find a note under my door telling me that Cearra had decided that she felt like she could drive him and that I could just go on to work because he had his alarm set.

I called him at 9 a.m. and he told me he was up and that Cearra was taking him. I texted him at 10:20 to ask him if they had made it and he said yes and that it "was crowded".

11:00 a.m. The receptionist called to ask me why Tanner hadn't made it to his appointment!! We've rescheduled for 8:30 a.m. on Thursday morning and needless to say, I will be taking him myself.

I've called and texted and can't reach him right now but I figure he's asleep.

I'm just so very frustrated! Quite bluntly, I'm angry!!

This past week while we've been texturing his bedroom and moving things out of the room to make way for all the work being done, I found his last prescription of Revlimid (the med that is prescribed to help extend the remission period) and he hadn't even taken it out of the bag. It was still sealed and not even opened.

He's been sick to his stomach and experiencing lots of stomach acid. He's been having deep depressions and mood swings.... But when you get down to it, he's not taking care of himself at all.

He wants to be like all the other 19 year olds. He doesn't want to take medicine... He wants me to leave him alone.

He has cancer... an incurable form cancer....

I'm in a fragile state right now... One wrong word at this point and I will be in tears... again... On my own with a shattered heart looking the dreaded holidays in the face and Tanner has decided to just stop taking care of himself.

How do I address this?

So... He's finally answered my texts, "I just am tired of my medical stuff..."
I've emailed Dr. A that Tanner is struggling. Wanted to give her a head's up so they can address the issues at his appointment Thursday.

Timshel

2011-11-14T22:21:00.011-06:00

Broken and shattered and trying to put the pieces back together...

to be stronger on the other side...

This song moves me...

Timshel - Mumford and Son

Cold is the water

It freezes your already cold mind

Already cold, cold, mind

And death is at your doorstep

And it will steal your innocence

But it will not steal your substance

But you are not alone in this

and you are not alone in this

As brothers we will stand and we'll hold your hand

Hold your hand

And you are the mother

The mother of your baby child

The one to whom you gave life

And you have your choices

And these are what make man great

His ladder to the stars

But you are not alone in this

And you are not alone in this

As brothers we will stand and we'll hold your hand

Hold your hand

But I will tell the night

And whisper, "Lose your sight"

But I can't move the mountains for you

The Hebrew word Timshel - 'thou mayest'

we have a choice... for if we 'mayest' so too then we 'mayest not'

triumph over "sin"... "ignorance"...

Choices... every day...

MMRF Gala

2011-11-10T11:18:00.002-06:00

Everytime I stop and read publications dealing with Multiple Myeloma, I become frightenend all over again. I survive each day by believing that Tanner is going to be one of those in the small minority of MM patients who are going to beat the odds of the five year life expectancy. I have to believe that he's going to have a chance to live many years... to experience LIFE...

I urge him all the time, to live life to the fullest. To live with joy, abandon, and love... to put the negativity and darkness aside and just try to relish every moment...

About Multiple Myeloma
Multiple myeloma is an incurable blood cancer. The five-year relative survival rate for multiple myeloma is approximately 38 percent, one of the lowest of all cancers. In 2011, more than 20,000 adults in the United States will be diagnosed with multiple myeloma and nearly 11,000 people are predicted to die from the disease.
About the Multiple Myeloma Research Foundation (MMRF)
The Multiple Myeloma Research Foundation (MMRF) was established in 1998 as a 501(c)(3) non-profit organization by twin sisters Karen Andrews and Kathy Giusti, soon after Kathy's diagnosis with multiple myeloma. The mission of the MMRF is to relentlessly pursue innovative means that accelerate the development of next-generation multiple myeloma treatments to extend the lives of patients and lead to a cure. As the world's number-one private funder of multiple myeloma research, the MMRF has raised over $170 million since its inception to fund nearly 120 laboratories worldwide, including 70 new compounds and approaches in clinical trials and pre-clinical studies and has facilitated more than 30 clinical trials through its affiliate organization, the Multiple Myeloma Research Consortium (MMRC). As exceptional stewards of its donors' investments, the MMRF consistently surpasses its peers in fiscal responsibility. For more information about the MMRF, please visit www.themmrf.org.

More than 1,000 People Brave Historic Winter Storm to Champion Cancer Research at Multiple Myeloma Research Foundation (MMRF) Fall Gala Raising $2.1 million

Stevie Wonder, Michael McDonald, Darius Rucker and Javier Colon Wow the Crowd with Astounding Musical Collaboration

Norwalk, CT — November 7, 2011

October’s historic snowstorm could not stop the Multiple Myeloma Research Foundation (MMRF) from bringing together over 1,000 supporters, including many myeloma patients and their loved ones, as well as celebrity guests, at its 15^th Annual Fall Gala on Saturday Oct. 29, in Old Greenwich, Connecticut. Despite road closures and power outages, Gala attendees were determined to make it to the event – evidence of their dedication to the mission of the MMRF. The premier benefit raised $2.1 million to support MMRF efforts to develop next-generation treatments for patients with multiple myeloma, an incurable blood cancer, and find a cure.
Music industry legend Stevie Wonder received the MMRF’s Spirit of Hope Award in recognition of his extraordinary humanitarian efforts, philanthropic leadership and generosity of spirit which truly encapsulates the word, “hope.” As an activist, Stevie spearheaded the effort to make Dr. Martin Luther King Jr.’s birthday a national American holiday, and has performed benefit concerts for a vast array of worthy causes. Stevie currently serves as the United Nations Messenger of Peace with a special focus on persons with disabilities. Grammy-Award winning artists Michael McDonald and Darius Rucker and winner of NBC’s “The Voice” Javier Colon wowed attendees with their powerful performances as Featured Artists in a Tribute Concert to Stevie Wonder.
“It is an honor to be recognized by the MMRF – an organization that has helped so many families affected by multiple myeloma,” said Wonder, a close personal friend of MMRF Board of Directors member Michael Reinert who is currently battling multiple myeloma. “Cancer has touched someone in all of our lives. It is my hope that, by continuing to raise awareness and research funds through events like this, we can play a role in helping the MMRF bring patients new treatments that will extend their lives.” Stevie Wonder made the evening especially memorable by joining the event’s Featured Artists to perform several of his classic hits.
As a testament to her commitment to patients and families living with cancer, Deborah Norville, Emmy Award-winning broadcast journalist, New York Times best-selling author and a member of the MMRF Honorary Board of Directors, served as Mistress of Ceremonies for the 10^th year. Dennis Gillings, CBE, Chairman and Chief Executive Officer of Quintiles, was honored with the MMRF Corporate Leadership Award for Quintiles’ leadership and vision in delivering new drugs and cures for the world’s most challenging diseases. Other special guests included MMRF Honorary Board of Directors members Ann Curry, Co-Anchor of NBC’s TODAY show, and Carl Quintanilla, CNBC’s Co-Anchor of “Squawk-Box.”
“Thanks to the amazing generosity of those who have supported the MMRF Fall Gala, we have made incredible progress developing the next generation of lifesaving treatments—providing great hope and changing the outlook for patients fighting this still-fatal disease,” said Kathy Giusti, Founder and CEO of the MMRF and a myeloma patient. “I have been given an amazing gift – a legacy to leave behind, a tribute to the amazing work we have all done together. It started as a pledge to two young children to stay in the fight. It continues as a pledge to help as many patients as we possibly can.”
PepsiCo served as the event’s Presenting Sponsor and the evening’s Leadership Circle was comprised of Paula and Warren Berliner, Celgene Corporation, Karen and Michael Reinert, and Debby and Peter Weinberg. MMRF Fall Gala Vice Chairs were Angelique and James Bell, Richard Bellas, Elizabeth Donald, Kathy and Paul Giusti, Elizabeth and Traver Hutchins, Keno Graphics, Kathleen McCabe and W. Dana LaForge, Lori Marcus, Millennium: The Takeda Oncology Company, Anne and David Ogilvy, Onyx Pharmaceuticals, Chuck Ortner, Anne-Marie and Paul Queally, S.A.C. Capital Advisors, L.P., and Marcie and Miles Stuchin.

The Calm

2011-11-05T11:39:00.002-05:00

Well things are fairly quiet and calm right now.

Tanner has seen the Physician's Assistant at his chemo appointment the last couple of weeks and he says that everything is still good with no changes. I don't know if Dr. Albritton is out of the office or if she's decided she doesn't need to always see Tanner at his weekly appointments since his MM is stable at this time.

We go back to Dallas to see Dr. Berryman the first week in December and after that appointment, they are going to initiate the changes to move him to the adult practice at Texas Oncology on 8th Avenue.

I've actually barely seen Tanner the last several days. I work all day and when I get home he's at school. Most any free time he has he spends with Cearra - though yesterday he did work all day with his dad.

My niece, Beth has come to Texas for a weekend wedding and has been staying with me. It's been wonderful having her home. She's out visiting friends this morning and I finally got the back yard mowed and am hoping that's it for the winter.

It's been calm for a short while now, but if there's one thing life has taught me, that can change in an instant. I find myself just waiting for the bottom to fall out again.

It's not if.... It's more like when...

In the meantime, I'm trying to enjoy each moment, lately, to the fullest.

2011-10-30T14:10:00.002-05:00

Granny and Pop Jerry came over yesterday and finished texturing Tanner's bedroom walls and we can start painting tomorrow. I can't wait to see the finished product!

It already looks so much cleaner and brighter in there without all the posters on the wall. He's decided to use gray paint with a highlight wall done in black. Then we are planning to go with some framed brightly colored posters (in good taste this time).

Granny and Pop Jerry are going to give him their leather recliner so he'll have a sitting area in the room so that he doesn't have to sit on the end of his bed when he's playing video games (which is not good on his aching back).

I'll be sure and post pictures of the finished product.

I told Tanner and Cearra that I would take them to the movies yesterday and asked that they pick out a film they wanted to see. My only restriction was that I didn't want to see a horror movie. They came up with Puss and Boots - which ended up being an amusing end to a loooong day.

They are spending the day today with Cearra's family so I think I'll go and mow the lawn. I've been told that I should only have to mow one more time before winter arrives and since it's such a beautiful day, I think today is the day.

“When you remember me, it means that you have carried something of who I am with you, that I have left some mark of who I am on who you are. It means that you can summon me back to your mind even though countless years and miles may stand between us. It means that if we meet again, you will know me. It means that even after I die, you can still see my face and hear my voice and speak to me in your heart.
For as long as you remember me, I am never entirely lost. When I'm feeling most ghost-like, it is your remembering me that helps remind me that I actually exist. When I'm feeling sad, it's my consolation. When I'm feeling happy, it's part of why I feel that way.
If you forget me, one of the ways I remember who I am will be gone. If you forget, part of who I am will be gone.”
― Frederick Buechner

Switched Moods

2011-10-25T19:29:00.004-05:00

It seems that Tanner and I have switched moods. I've started to pull out of my depression and Tanner has sunk into his own dark mood.

He has been very low all weekend and told me that he doesn't know what is wrong with him; that he just feels very sad. He said he hasn't felt this depressed since his and Trevor's friend John committed suicide when Tanner was only nine years old.

I went out after work yesterday and didn't see Tanner when he got in from school last night so I didn't have a chance to talk to him and see if things were any better.

I talked with him earlier and he said his doctor's appointment went okay - but Dr. Albritten wasn't there today so it was just his routine chemo appointment this week.

He's amazed me for more than two years now with how well he's handled this whole process so I'm not surprised that he has low days occasionally. He's actually done better than his mom when it's come to strength in dealing with everything since his diagnosis.

Granny Jane and Pop Jerry came over a couple of times this weekend and are helping us textureTanner's bedroom in preparation for a new coat of paint. I think taking all the posters off the wall and moving out some of the old furniture was a little overwhelming for him but I hope that when it's finished and he has a "grown up" room, he'll be glad for the changes.

What is life without change?

“Your time is limited, so don't waste it living someone else's life. Don't be trapped by dogma - which is living with the results of other people's thinking. Don't let the noise of other's opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.”.. Steve Jobs

On My Own

2011-10-19T14:28:00.012-05:00

So, it's worked out that the psychologist wanted me to see either a psychiatrist or my family doctor - but either appointment would cost over $300... So, I'm going to continue to do this on my own. I've been doing it on my own all my life and I see no reason why I can't continue that way. It's going to all be okay eventually... One way or another...

Hurt, heal, and move on.... learn to live again. Do what I have to do...

I've started the process and I've come a long way from where I was a year ago... a month ago...

Tanner continues to do great. His Multiple Myeloma is under control, he's going to school, doing his homework, dating Cearra and, as he puts it, "loving life". What more could we ask for?

He's learned to live in the moment. He has a terminal illness and he's "loving life"... Really, what's more amazing than that statement from a 19 year old with cancer? If he can face what he's been through and learn to live in the moment... If he can find his way back to loving life again, it's time for me to learn from him.

Sometimes the answers we seek lie in the silence...

A Balancing Act

2011-10-13T12:57:00.004-05:00

So, I started my day with an early morning appointment with a phsychologist.

On the way there, I kept telling myself I was fine. I was thinking "Why am I doing this? Everyone gets drepressed sometimes. She will wonder why I am even here".

I arrived and she took me back to the room and told me that this visit was going to be a little more "formal" than future visits and that she needed to gather some background information. Then she started asking me about my family, my childhood, my marriage, my relationships, my sons, and myself - and the tears started flowing....

She says that with my family history, I am chemically predisposed for depression and asked how in the world was I coping everyday with all the extra issues in my life - and I told her that I don't have a choice. What do you do? It's just me and I have to get up and go to work; I have to function. She said that they "see that all the time in women". That just because you keep functioning every day doesn't mean that you arent' depressed.

We talked for over an hour and at the end of that time, she told me she thinks I'm having some significant depression problems and that she wants me to commit to a year of working through some of these issues... of getting the help that she thinks I need.

She said that depression, for many people, is an hereditary illness... like diabetes, or any other illness. It isn't something to be ashamed of - and it isn't something you can wish away - and it isn't something that is often understood by the vast majority of people who don't have any experience with it in their lives.

I told her that I've tried counseling off and on through the years and that I'm not good at it; that opening up to people doesn't come naturally to me... but I also told her that with Trevor's mental issues and Tanner's cancer, I've reached a place in my life where I know I have to do something.

I told her that I have a friend, Donna, who has been there for me for over thirty years. She's my family - the one I can always count on no matter what - and I have to force myself to talk to her. I have to force myself to go out with her to eat, to the movies, just out... because my instinct is to just hide in my bedroom... to withdraw... but I have been trying. I have been going out - and I have been reaching out to my friends.

I know all the positive things I need to do. I know that it could be worse... I know that I have so many people who love and care for me and the boys... I know I need to live in the moment... I know all of those things, but I'm struggling...

I've reached out to my friends and have been going out with them, I've been visiting churches, and I've admitted to the doctor that I'm struggling. I've been doing what I can to pull out of this.... but I am who I am.... and I'm doing what I need to do...

So, since I don't have insurance, she's going to talk to the psychiatrist on staff and see what they feel my next step should be. Commiting to a year of treatment isn't going to be cheap... so believe me, I'm back to telling myself I can do this on my own. I've always been able to do this on my own.

Please don't think I go around all the time in tears... I laugh every day, I enjoy the people I work with, I spend time with my friends and family, and I especially enjoy spending time with my grandson Beckett (my granddaughter lives out of town and I don't get to see her very often). I find enjoyment in life almost every day... but at the same time I also struggle on an almost daily basis... It's a balancing act...

I guess we'll see where it goes from here.

In the meantime, Tanner is doing great! He says he's doing good in school in all subjects except math and when I talked to him about a math tutor, he says he has a friend who has been helping him.

His health has been stabilized, school is going well, and his relationship with Cearra seems to be moving right along.

He's come so far in the last year! It's been nice to have my sweet Tanner back these last several months!!

50/50

2011-10-09T21:32:00.009-05:00

I had my grandson, Beckett, over to spend the night last night and it was wonderful! We went to Jesse's house and I cooked dinner and he played with Eva - running and jumping and giggling... It was an almost perfect night... I blew up the air mattress (thinking it might be a little less scary to say we were going to watch a movie in the living room than telling him let's go to bed) and we put in "Rio" - and he spent his first night alone with Maw Maw..

This morning Alicia and I met and visited the First United Methodist Church in downtown Fort Worth. The Sunday School class was good - and they discussed forgiveness... and it touched chords in my heart.

We attended the contemporary service that they call "11:11" and it was really nice. The music was wonderful... a cello, mandolin, tubas, flutes, and guitars... and wonderful vocalists... The speaker was in no way your old fashioned minister, but his message, too, dealt on forgiveness - and I left feeling uplifted and glad that we went.

Church was followed by lunch with Alicia and, following a night spent with my grandson and family, it was a good start to my Sunday.

Tanner is in Corpus Christi with his dad and grandfather and judging by his texts and pictures, he's having a wonderful time... A much needed break for all of them...

I came home from lunch and thought I would have just a lazy day at the house but the walls started closing in on me.

Dr. Albritton had recommended that Tanner and I go and see the movie "50/50" and I started thinking about going - but then thought, "No, I should wait and go with Tanner"... and then I thought, "No... no - it would probably be best that I see this movie on my own."

It deals with a young man in his twenties who's diagnosed with a rare form of cancer and is given only a 50/50 chance of surviving.

A young man with a rare form of cancer and low odds of beating the disease... I decided seeing the movie on my own would be best - so off I went for a Sunday evening at the cinema...

It was a very good movie... but not for everyone... Lots of cursing (and medical marijuana). Being the mother of two sons, I could handle the reality of much of what was dealt with and how it was presented.

I sat in the dark theater and I would think, "Oh, that's how I felt"... "I wonder if that's the look that was in my eyes??"... I would wonder,"Is that how Tanner felt?"... "Is that how Tanner feels?"

A scene where the young man is sitting in a car and he screams... He screams for all he's worth... till there's no more scream left in him... and I thought, "I've done that... I wonder if Tanner's done that?"

It dealt unrepentantly with many of the aspects of a young person who is diagnosed with cancer... How their young friends, who love them deeply, might not know how to express their love and concern... How some of their friends might leave them because they just can't deal with the reality...

I sat in that darkened theater and I wept...

I got in the car and plugged in the IPOD and put on my Hallelujah playlist and drove home emotionally wrung out... I put my earphones in and listened to the same playlist and went for a long walk on this beautiful, cool, and rainy evening... and here I am....

It was a hard movie for me to watch.... I'm glad I went.... and I'm glad I was alone...

I don't know if I've mentioned it (LOL), but I've been struggling lately... Donna at work made me "pinky promise" that I would email Dr. Albritton and let her know about some of my issues... So I did... and she emailed me back - and then followed up with a calll.

She said that with all the issues I've had, it's not unexpected that during this "calm" I would have some sort of a breakdown... She said they've been worried all along how well I was handling "everything" that we've endured these last years....

She asked hard questions and I gave her honest answers and she told me that I wasn't unusual... that I'm not crazy - and that the good thing is I reached out... I reached out and asked for help....

I've committed to see a psychologist over at the Moncrief Cancer Center - and I'm going to call to make the appointment this next week.

I keep telling Donna that "it's going to be okay", and I'm sure it will be, eventually, but it's just hard... It's hard...

I know I'm not the only mother who's had a child with a terminal illness... I know people who've lost a child... I know it could be worse.... it could always be worse.... but this is our journey... this is where we're at now - and it's hard...

No one can fix me; make me happy, change my reality... except myself... I've reached out and Dr. Albritton responded and I'm going to get some help, because like she told me, I need to deal with my issues while things are "calm" because it won't remain this way... There will be another catastrophe, more problems, more health issues - and I'm going to need to be strong.

So, it will be okay.

Baby I have been here before
I know this room, I've walked this floor
I used to live alone before I knew you.
I've seen your flag on the marble arch
Love is not a victory march
It's a cold and it's a broken Hallelujah

Survival

2011-10-05T21:28:00.006-05:00

So... I logged onto Facebook and saw an entry from Tanner (he's not home from school yet) and it says that he did his Powerpoint presentation at school tonight (about Texas Death Row) and that it went well and that the professor told him he did a good job! Yay!! I know he's been working hard and seems to be giving school all he can. A mother couldn't really ask for more. I've always told him to just do the best he can and ask for help when he needs it.

I'm so proud of the progress he's made in the last several months. He texted me tonight to ask a question - and I became frustrated and in answering, I went too far... Said too much...   After a bit, I texted him back that I was sorry... that I've been stressed and that I sometimes "go off" and say too much. He responded that it was okay, that he knows that I, "deal with emotions" like he does and "that's mostly alone and kept in" and that he was sorry that he "hasn't always been the son that he can be". I told him I was the one sorry for overreacting, that he's been doing good, and that I love him very much.

See... we often communicate via text... Today's world!

I work all day and then he's in school when I get home. If we're lucky, we have a few minutes conversation before I go to bed - but since he has a girlfriend now, somedays I don't see him at all. On most days, I'm thankful for texting!

He's 19 and it's not all perfect, but what a sweet son he is... I hope and pray every day for his health - and that he will make good choices... I'm sure that's what most parents of 19 year olds do on a daily basis.

He's actually been doing so well on all fronts of his life for quite a while now... I find myself spending a lot of time on my own... I was talking with Donna at work about it this week and I told her I was so gratelful for his continued good health and how well he's doing in his personal life, but as he's becoming more independent, I'm finding myself floundering here on my own... I've wanted him to become independent, both of my boys, for a long time. I've worked and waited on the day for them to become responsible independent young men and now it looks like that day is approaching... Not toally here yet, but there - in sight... and thank goodness for it! Two years ago we didn't even know if Tanner would be here at this date and time!

I've spent so much of the last two years solely focused on his health... getting him to tests, treatments, making sure he takes his medicine... picking him up off the floor when he was too sick to rise himself...  Now I find myself with all this time on my hands...

I've spent so many years pretty much solely focused on my sons. There was so much going on in their lives - it consumed me... Then Tanner got cancer and all traces of any life beyond taking care of him and getting as much work done as I could - simply disappeared...

Now here we are. Tanner goes for his weekly chemo (which luckily doesn't make him sick) attends school four nights a week, does his homework, and spends as much time as he can with his girlfriend... and here I sit... still worrying... waiting for that other shoe to drop... the next catastrophe... and I need to stop that...

I realize how alone I've allowed myself to become. I've narrowed my life down to counting on just a few things and people - to the point that I've largely isolated myself. I'm not the best of friends... I'm not "easy"... I don't call as much as I should (I'm horrible with talking on the phone), so I allow too much time to pass before I reach out to my friends... so much time that I'm sometimes surprised that I still have that core group that are still there for me through thick and thin - no matter how hard things become or how far I pull away. I am blessed for you Donna, Sandy, my other Donna, Alicia, Sherry.... Thank you all for being there for me. I love you all...

Tanner and I have been visiting McKinney Bible Church off and on for a while now and this past Sunday I went to their "adults" group. They had a lady talking about surviving in todays world... but it dealt largely with pornography and how it's a much larger problem than most of us realize... Not quite what I was looking for when I went to the session. My thoughts in attending the adults group was that I hoped to make myself meet new people - and as large as McKinney Church is I thought their group might be a possible answer... but I really didn't "feel it" in the meeting Sunday.

First United Methodist in downtown Fort Worth has several groups and they break it down into ages 30-40's.. 40's-50's... and from checking out their calendar I see that they do all kinds of things... This week they have "Meet, Eat, and Chat" at a popular mexican restaurant, Cha-Cha dance lessons, volunteering at a homeless shelter, dinner and a movie, and a patio party.... all in addition to the church events. I raised my boys going to a Methodist church...   Maybe this will feel more comfortable to me.

Alicia at work and I talked about it and I think we are going to visit the church Sunday and attend the 40-50's class and see what we think. I need to broaden my horizons... I need to get out of my house - my bedroom - and try not to worry and obsess all the time... over things I have no control of.    I need to find my way back from just simply surviving the days to wanting to actually, really LIVE again.

Tanner is doing so well... It's time for mom to do better too! I'm going to try....

Intuition is the clear conception of the whole at once... Johann Kaspar Lavater

An Emotional Trip

2011-10-01T22:49:00.007-05:00

Tanner is actually in Oklahoma right now with Cearra and her mom and I'm having a quiet night at home. The weather tonight was absolutely beautiful and I went for a long walk as the sun was setting for the day.

Yesterday, I headed down to Clarksville to put flowers on the graves of my mom, dad, and two brothers and it was an emotional trip. How do you drive to a cemetery where the majority of your family rests (aunts, uncles, cousins, grandparents - in addition to those from my immediate family) and not think about death?

I was 15 years old when my 20 year old brother was killed, had a two year old toddler when my mom went into a coma and passed away, had two young sons when my dad passed, and then endured the pain when my youngest brother became addicted to drugs and shot and killed himself.

I've watched my oldest son battle his demons with manic depression and drug addictions... rehabs and prisons...

I watched my baby face cancer and I thought that was the worst of my worries. I thought, when he reached remission, that my biggest fear would be if he were to relapse... Then the insidious disease of addiction took hold of him too... and I found all new depths to my worries and despair.

With the help of Dr. Albritten and her staff - and Granny Jane and Pop Jerry - Tanner has turned his life around. He's beaten off his addictions to the pain medicines that were prescribed for his treatment, has started college, and has found a girlfriend (something I didn't know if he would ever have the chance to experience when he was diagnosed with Multiple Myeloma two years ago) and above all else, remains in full remission.

But, being me.. I still worry.... what if... what if... I'm always waiting on the next "shoe to drop"... the next disaster...

I drove to that cemetery yesteday and I put out the flowers and I remembered my family... and I wept... My family is almost all gone and those that remain, are largely fractured and broken... and it's so very sad... and I'm so very alone with this despair and worry... I miss my mother, my memaw... I miss them all... but my mother and my memaw... oh how they would have been there for us during this journey with Tanner's cancer... I miss their unconditional love...

After the cemetery, I went to dinner with my Aunt Onvie, whom I hadn't seen in a few years, and we talked and talked about the family and she gave me some of that unconditional family love that I've missed over these last few years. I wish my boys had a chance to know her and their cousins better... the way we all were a knit family when my grandmother was still alive.

I truly don't know what me and my boys would have done, would do now, without Granny Jane and Pop Jerry... but sitting beside those graves, I wept for the loss of my family... for that love that I knew, beyond a shadow of a doubt, that they all felt for me... for all of their family...

I'm having a hard time. My "motto" when I'm depressed has long been "fake it until you feel it"; put on a smile and eventually you will start to feel better... but I'm having a hard time pulling out of this depression...

My friend, Shirley (that we met in Arkanasas when she was going through her MM treatment) has been emailing me and asking about me and Tanner. I told her I'm having a hard time and that she wouldn't believe some of the thoughts that cross my mind. She told me to ask for help... to talk to Dr. Albritten....

She's right, it's time for me to ask for help... So tomorrow, I'm attending an adults class comprised of married and single adults who meet, talk, socialize, and support each other. The man I've been emailing about the group said that a woman is speaking tomorrow about the struggles she's faced as a single mom in today's world... Probably a good group for me to start with.

I've always been a little introverted... okay, a lot introverted.... so walking into that room by myself won't be easy for me to do but I'm hoping it will be a good thing for me to do...

I'm also planning to talk to Dr. Albritten this week about the fact that I'm having a hard time pulling out of this bout of depression. I don't have insurance so I've been hesitant to seek medical help - but she knows our history the last two years and I think it's time to admit to her how I'm struggling...

When we were in Arkansas, things, in many ways, were "easier"... We were so focused on Tanner's treatment and dealing with the unbelievable illness caused by the chemo, there was very little room for any other thoughts. Now that he's doing so much better, isn't sick from his treatment, is going to school, has turned his life around - I have too much time to think... to worry... to mourn the loss of innocence.... the thought that "this will never happen to us"... the loss of family, security, love... of oblivion...

Tanner has seen me cry these last few weeks way too many times. It's time to seek the help I need to pull out of this and for me to turn my life around... like he's done these last several months.

We're going to be okay.

It's a Trip, Isn't It?

2011-09-27T17:59:00.004-05:00

I took Tanner to see the Orthopedic Surgeon in Dallas today for another follow up. He says that the x-rays look good but that Tanner has bursitis in his right hip where they did surgery and that it should resolve itself over the next few weeks or months. If not they can inject the hip to help ease some of the discomfort. Tanner told him he would just wait and see if it works itself out.

We were driving home and his head was bobbing around (as usual, he fell asleep on the car trip back from Dallas) and when I stopped at a red light, he roused and put his head over towards my shoulder. I layed my cheek on top of his head and he said, "It's a trip isn't it"? I asked him if he meant the drive back and forth from Dallas, and he said "No... That I have cancer."

My heart ached... and has continued to ache all day.

Of course, I did the "mom thing" and talked to him about living every moment to the fullest... that we never expected something like this to happen to us... that life should be lived every day for all it's worth (some advice I really need to heed for myself) and not in darkness and sorrow... but all day I've just felt like crying.

"It's a trip, isn't it?"

It's Not Easy

2011-09-22T16:31:00.006-05:00

Tanner's doctor visit this week seemed to go well.

Dr. Albritten came out and talked to us together for a few minutes and then when they took Tanner back to start his IV, she and I talked about his schooling, his medical care, and how far he's come in the last year.

She feels that it is very important for Tanner to interact with other young adult cancer patients and would like for him to attend several social events the Oncology Department is hosting in the near future. Unfortunately, (or fortunately depending on the way you look at things) Tanner has school every night, Monday thru Thursday, so he's not going to have a lot of opportunities to attend any of their functions.

She asked me how I was doing and we discussed a late night (tearful) conversation that Tanner and I had on the porch swing earlier this week around 1 a.m. You could see the genuine concern in her eyes and she said that she so very badly wanted to do something to help us find our way.

When Tanner came out from having his IV placed, she told him to come with her and she took him into a room and talked to him for quite a while and when he came out she had given him some information about a program where he can be connected to another cancer patient who has similiarities to Tanner's circumstances. Sort of a cancer mentoring program...

I'm going to do my best to see that he follows up on this information. It's like she and I talked about, though Tanner may look like all the other 19 year olds he's friends with, he is in fact very different from all of them and he needs to have the opportunity to interact with others who can understand what he's going through.

I love Dr. Albritten...

As for me, I'm having a hard time again. It's a journey with peaks and valleys...

We went to a meeting at the Cancer Center a while back and the man who talked said that he has discovered during his journey with cancer himself - and counseling other's with cancer - that the people who seem to have the hardest time are parents of children with cancer. I believe him...

I'm going to be okay. I'm always okay eventually... but this is a journey I never expected to have to take and it's not easy. Worry and stress are constant companions. Sometimes I can push it aside and sometimes I can't... I've never felt more isolated and alone than I have the last few years...

I often feel guilty blogging about how hard this is for me. I wish I could be one of those ever positive people who always see the light... who always only have positive upbeat things to say... but I am who I am... and since I don't often actually talk to anyone about what's going on deep inside me, you get to read about it here.

Thanks for understanding.

Here we go

2011-09-17T12:03:00.003-05:00

Tanner spent the night with Granny Jane and Pop Jerry last night and I'm about to leave and go pick him up.

He seems to be doing well - and liking school so far. He had a math test on Thursday and told me that he thought he understood it all and did well. He actually seemed pretty excited. Hopefully, he will continue to do well as the school year proceeds.

I had a talk with him and his new girlfriend (Cearra) one night this last week and expressed to them how very important it is for him to concentrate on school as much as he can so that he can focus on a future career that will support him with his medical condition and the limitations of his bones.

He says he's 19 and has never had a "real relationship" and that "it's time" - I told him right when he's starting college is actually maybe not the "right time" but, hey, what can you do? You can't control love, now can you?

I just thought it was a good idea to sit them both down and talk to them together about the importance of school - and him taking care of himself.

I had another one of those nights. I think I might have gotten about two hours sleep and I'm so exhausted, physically, mentally, and emotionally... Sometimes, I wonder who I am to give Tanner advice... but what do you do? You're "mother" and you keep talking and you hope some of the things you say sink through... You hope that sometimes - no you hope always - that your children succeed and make better decisions than even their parents. It's just hard to be 19 - and all that entails - and have cancer too...

Muscle Spasms

2011-09-11T01:47:00.001-05:00

It's nearly 2 a.m. and Tanner is soaking in a hot bath.

I came home tonight after being out for a few hours and he had one of those heating packs stuck to his back and he told me that his back is having muscle spasms.

For brief periods of time, I can put aside worries... but they always come back.

My teenage son has cancer and he will ALWAYS, for the rest of his life, have to deal with all that that entails.

A year ago he became addicted to his pain medications so they prescribe for him very little to deal with the pain... But then, what do you do when he hurts? He's not supposed to take Ibuprofen - and Tylenol is nothing...

So tonight, he's using heating pads and taking hot baths - and his mom isn't sleeping.

A Clean PET Scan

2011-09-09T09:46:00.005-05:00

Last Friday Tanner had a full body PET Scan over in Dallas and it showed that he is still in Full Remission!!

Dr. Berryman said that at this point Tanner should just continue with his maintenance chemo as he's been doing the last year and a half with no changes and we return to Dallas to see him again in December. He also said that he talked with Dr. Albritten at Cook's Oncology and they are going to start phasing Tanner over to Texas Oncology during the next two months.

Dr. Albritten said they are writing a "Young Adult Protocol" and Tanner is their guinea pig. She has been talking with him about the importance of reading and signing his own medical forms. They also discussed clinical trials and that he shouldn't just agree to participate in any that might be presented to him in the future until talking with his doctors and investigating the trials to the fullest. This is all part of "phasing" their young patients over to adult practices. They don't want to just release him until they've spent some time discussing with him the importance of being responsible for his own medical care.

He's been attending evening classes at Tarrant County College for two weeks now. He told Dr. Albritten this week that so far "nothing has scared him yet"... Last night when I picked him up he said the work has really started and that he has lots of homework that needs to be done before he goes back to classes next week.

I talked with him about realizing that school is going to be a lot of hard work but that if he will just give this his best shot and really apply himself, in two years he can have an Associates Degree and will be able to pursue a career that will afford him a wage where he can become self sufficient and independent. Something that we all want...

Lisa, the Young Adults Coordinator at Cook's Oncology, and I were talking the other day about how far Tanner has come from where he was a year ago. I am so very proud of him and the progress he's made.

He and I both have been in what he calls our "mood" for over a week now. I told him that maybe it has something to do with the fact that we were able to spend a week in paradise in Hawaii and have come back to the reality of our every day lives.... It's an adjustment....

He needs to focus on school, taking over his own medical care, and improving his chances for a successful future. I need to focus on letting him go and improving my own personal situation. 19 or 49, we are still works in progress and both need to learn to take care of ourselves...

As Beth tells me, "we can't control anyone but ourselves"... It's time to let Tanner start to control the direction of his medical care and future and me to start controlling the path of my own life...

Letting go is sometimes a difficult thing to do, but maybe realizing you never really had control is the hardest of all...

"Do not spoil what you have by desiring what you have not; remember that what you now have was once among the things you only hoped for." - Epicurus

A Week in Paradise

2011-09-01T11:22:00.004-05:00

Tanner and I had a week in Paradise!

His Make a Wish trip to Hawaii was all he could have dreamed of…

When we arrived they shuttled us over to Avis Car Rental and the girl told us that we were supposed to have a full sized vehicle but that they were all out. I told her that I drove a Honda Fit so a small car was just fine with me! Tanner piped up and said “How about one of those Mustangs I saw on the parking lot”? They said “Sure! How about a convertible”? So… we ended up with a red Mustang convertible! My dream car!! LOL!

Tanner told me he asked for it because I’ve always teased the boys that when they were grown and I was on my own I was going to have a Mustang Convertible (with car seats in the back for my grandkids)! On our free day, we put the top down and toured one beautiful beach after another on the North Shore. It was heaven!!

Our hotel was right on the beach with an ocean front view and I started and ended each day on our balcony taking in the breathtaking sight of the beach below!

We had a helicopter tour of the island where we got to see volcanoes, waterfalls, pineapple plantations, Pearl Harbor, and Gilligan’s Island (LOL)!

We took a submarine ride and saw lots of fish, man-made reefs, a sunken ship, and a downed airplane.

We went out on a catamaran and Tanner made friends that he socialized with throughout our time in Hawaii. He’s a much more social soul than his mom and, as I knew he would, he made friends right away and they took him and exposed him to parts of downtown Honolulu that he wouldn’t have ever found on his own!

On our last night in Hawaii, we attended a luau in Paradise Cove and they made sure Tanner felt special the whole night! They surrounded him with beautiful girls (in coconut bathing suits) and took a picture (which they gave Tanner complimentary) and had reserved seating for him right up front and center of the stage.

We met a young girl and her mom who were on vacation from Canada and she bonded with Tanner right away and they spent the majority of the night talking with each other. It was a perfect way to spend our last night in Honolulu!!

I’ve been asked more than once, since we returned, what my favorite part of the trip was and I have to say simply spending time on the beach... lying on a beach blanket occasionally reading a book - but mostly just watching the beauty of the waves breaking against the shore… It was, truly, paradise!

I can’t say enough about the Make a Wish Foundation! They give these children (and their families) a once in a lifetime experience and memories that will last forever!!

A smile happens in a flash, but its memory can last a lifetime…

A Contributing Post

2011-08-27T18:49:00.006-05:00

The following post is a contriubtion from David Haas, a fellow blogger who found "Tanner's Journey" and asked if I would mind sharing his article. As I've come to realize during the last two years, though I personally don't have cancer, I have discovered that exercise helps me tremendously in dealing with the stress and worry of my son's disease. I've never felt better than when I exercise daily...

Fitness Helps Patients in the Fight Against Cancer

A diagnosis of any type of cancer including breast cancer, skin cancer, colon cancer or even a rare disease like mesothelioma is often shattering. Fear, depression, hopelessness, and anxiety are common and understandable responses with any cancer diagnosis. One effective strategy for keeping energy levels high to fight the disease is to get regular exercise before, during, and after treatment.

What Can Fitness and Exercise Do for Cancer Patients?

There are several ways in which regular exercise and physical fitness help cancer patients to cope and fight back. For one, exercise focuses the patient’s mind on the physical activity, instead of on the on the disease. In this way it offers a respite from the anxiety that is normal any type of prognosis.

Exercise also gives the patient a feeling of control over what is happening to his or her body, which is something patients often lack when facing cancer.

Exercise has been proven to help fight depression and improve mood. This allows the patient to face the diagnosis with greater equanimity.

Exercise promotes better blood circulation to improve energy and healing and to deliver the body’s own disease fighting agents as well as chemotherapy drugs to all parts of the body where they are needed.

When it is performed with others, exercise can prevent loneliness. It can promote bonding when done with a spouse or family member, and friendship when done with a group.

Fitness gives patients an overall sense of well-being and can significantly improve mental attitude, physical strength, and quality of life during the difficult battle with the disease.

What Kinds of Exercise Are Good for Cancer Patients?

Walking, jogging, swimming, bike riding, and other cardiovascular exercises are great ways to improve stamina, muscle tone, and circulation, while increasing energy and improving the body’s immune response.

Doing resistance exercises with weights, either at home or at the gym, has an even greater effect on muscle strength.

Yoga and Pilates are two kinds of exercise that are especially helpful to cancer patients working to stay fit, because they engage the mind and the body while improving flexibility and muscle tone, promoting calmness and relaxation.

By improving energy levels and the functioning of the immune system, along with promoting a positive mental outlook, physical fitness throughout the treatment process and recovery can give the cancer patient a boost in the fight against this devastating disease.

By: David Haas Writer of the Haas Blaag

A Stem Cell Study

2011-08-16T13:55:00.002-05:00

When we first visited with Dr. Berryman in Dallas, he discussed with us that he knew Dr. Barlogie exclusively believes in autologous stem cell transplants (where you implant the patient's own stem cells back into their body after aggressive chemotherapy) - but that there were many different schools of thought on that subject.

He expanded further on the subject by saying that while he understood if you were transplanting your own stem cells, you avoid the possibility of rejection - you were also using those same "flawed" stem cells that contracted cancer in the first place.

He said that we needed to consider what would we do if the worst case scenario occured and Tanner was ever to relapse? Wouldn't we want to do something new? If the treatment he had already received had reached a point to allow relapse, wouldn't we want to do something completely different? Something that might assure a longer remission period? For that reason, he wants to "match" Tanner for donor stem cells just to "cover all the bases" if the unforseen ever happens - and is hoping that his brother, Trevor, will be a perfect match.

His reasoning made sense to me and the other day I was reading an Abstract for a study that was published in July 2011 regarding "Tandem autologous/reduced-intensity conditioning allogenic stem-cell transplantation versus autologous transplantation in myeloma: long-term follow-up".

In this study they compared the results of autologous stem-cell transplantation (your own stem cells) followed by a reduced-intensity matched sibling donor allogeneic (sibling donor) transplant to "auto" only in previously untreated multiple myeloma patients.

In all, 357 patients with myeloma were enrolled from 2001 to 2005 up to age 69 (there just aren't many MM patients in Tanner's age range). The results achieved showed progression-free survival at 60 months was significantly better with "auto-allo" than with "allo" alone (25% v 18%), as was the risk of death and of relapse in the long term (P = .047 and P = .003, respectively). Overall survival at 60 months was 65% versus 58%, and relapse incidence was 49% versus 78%. Complete remission rates were 51% and 41%, respectively. The conclusion being that in patients with previously untreated multiple myeloma, long-term outcome with respect to progression-free survival, overall survival, and relapse rate is superior after "auto-allo" (transplanting your own stem cells - followed by transplanting a sibling's matched stem cells) compared with "auto" (your own stem cells) only.

I guess what all of this boils down to, for me, is that I am reassured in Dr. Berryman's reasoning... This published study seems to back up his thoughts on the idea of following up on an "auto" stem-cell transplant with an "allo" implant increases the survival rate in MM patients.

It was a very big decision to move the bulk of Tanner's care from Arkansas to the Dallas - Fort Worth area and it's good to know that Dr. Berryman is on the "cutting edge" of multiple myeolma treatment and is knowlegeable about advancements that are being made every day.

Tanner's next PET Scan is scheduled for September 2nd followed up by an appointment with Dr. Berryman that same day to read the results. He and I both are anxious to find out the results of the test - and to see where his treatment will go from here.

Another Series Ending

2011-08-07T20:57:00.004-05:00

Barbara, Beth, and Tanner

I wrote to Dr. Barlogie and explained to him about Tanner's hesitancy in moving to Arkansas away from everything and everyone he knows - and that his college classes start at the end of August. I explained to him that we have visited with Dr. Berryman at the Sammons Cancer Center in Dallas and also that Tanner has had to two surgeries on his legs.

He replied "What a great story! I will be glad to work with Bob in the future".

We went back and saw Dr. Berryman (Bob) on Friday and told him what Dr. Barlogie said. He asked if that meant we would be going back to Little Rock and having the tests done and him assist with the care here closer to home. I told him that since Tanner is about to start college - and since the insurance won't cover the tests in Arkansas - we feel that he needs to go ahead and just take over and send copies to Dr. Barlogie of everything that is being done in regards to Tanner's treatment.

He said that there are many different schools of thought on how long maintenance chemo should last. He said some doctors only prescribe the maintenance treatment 2-3 years, other's treat up to 5 years, while other physicians believe you should keep patients on maintenance chemo until it seems to no longer be working. He said that Multiple Myeloma is predisposed for relapse (scary words to hear) and the goal is to delay that occurence for as many years as you can.

He said that with Tanner's young age we are in "uncharted territory" and that he was going to call Dr. Barlogie and get some insight into what he was thinking in regards to Tanner's long range treatment plans.

In the meantime, he wants to move Tanner's weekly chemo treatments to Texas Oncology in Fort Worth since that's the system he practices in.

While Tanner and I understand the need to move his treatment, it is going to be so very sad to leave the care of Dr. Albritton and all the people at Cook's Oncology and Hematology Department. They have become our friends these last two years...

So, as this series of treatments come to an end here in August and Tanner goes through his next series of restaging tests, his care is going to be phased over to Dr. Berryman in Dallas and Dr. Rashid Dean at Texas Oncology in Fort Worth. I just hope that everything works well with Dr. Berryman and Dr. Barlogie working together for Tanner's care.

Change is ever constant...

A Family Weekend

2011-07-29T09:10:00.001-05:00

Tanner comes home this weekend and we are going to try and have a "family weekend" with his brother. We'll see how much time we actually all spend together (you know that saying about the "best laid plans") but I do know that the plan is for us to all go and see the last Harry Potter movie. We've seen the whole series together since they were very young boys, so I guess we'll see this last one together too. I told them I've read the book and can just tell them how it ends, but they say "no way"!

Tonight, I think they are going to go night fishing with their dad. It's way too hot here in Texas to do much outside during the day right now...

I took Tanner to his chemo appointment on Wednesday and he was walking with only one crutch but his left leg was still swollen and was hurting. He said that he thought he was going to have to get the other crutch back out for a while. I'm still not use to seeing him without his leg brace!!

Surgery on the femur is usually more painful than on the tibia, but the fact that the left leg was broken for two years and had a bone graft made this last procedure a more invasive surgery - and it's just taking him a while longer to recover. He goes to see the Orthopedic Surgeon in Dallas on Tuesday for his follow up appointment, Wedensday is chemo in Fort Worth, and then Friday he goes back to Dallas to see Dr. Berryman. It's going to be a busy week!

After his chemo appointment on Wednesday at Cook's Oncology Department, we went over to the Center for Cancer and Blood Disorders and met with Terry Purdom, a man who was diagnosed with Multiple Myeloma in 2004 (http://web.me.com/tpurdom/Site/Home/Home.html).

Shirley Casey (our friend from OK who also has MM) hooked us up with Terry and we all decided it would be a good idea for he and Tanner to meet.

Tanner was very impressed with Terry and while we were there, the doctor came out and met with us also. He said that he was in no way a "specialist" in Multiple Myeloma, like Dr. Barlogie or Dr. Berryman, but that he would be more than willing to treat Tanner here locally under the supervision of either of the other doctors.

They gave us a tour of the facility and Monday evening, Tanner plans to attend a seminar that is to be hosted by Terry - "I Can Cope, Keeping Well In Mind and Body".

I'm so glad Tanner had an opportunity to meet Terry and I'm glad Shirley "introduced" us - from all the way up in Oklahoma (by way of Facebook)!

Slower Than the Hip

2011-07-22T11:02:00.003-05:00

Tanner's Painting for New Ward at Cooks

Tanner is doing well - though the recovery from surgery on the left tibia is taking longer than the recovery on the right femur. I guess it's because the bone has been broken so long and the surgery to place the rod in the left leg was more invasive than the hip.

He's been staying with his Granny and Grandfather again this week and yesterday he texted me a photo of himself on their recumbent bike. He said that riding the bike seems to be helping him and that he's been able to walk around the house a little bit without his crutches (he was off the crutches when they put the rod in his femur within three days). I'm sure it will probably be okay by the time his college classes start on August 29th.

I received an email from Make A Wish and they wanted to schedule his trip to Hawaii from August 20th - August 27th but I had to email her back and ask about the time of the flight on the 20th since college orientation is that morning until noon. I guess we'll see what they can work out but I think he's running out of time to make the trip work out since classes will soon start.

He's spending next week with his dad so I'll have another week of quiet before he comes home and we start getting ready for school (and possibly Hawaii - LOL). The first week of August he has three doctor's appointments and none of them could work out their schedules so that we could see multiple physicians on the same day. So, we'll make a trip to Dallas early in the week to see the orthopedic surgeon, then mid-week he will have his chemo in Fort Worth, and then later in the week we will head back to Dallas to see Dr. Berryman (the new Oncologist). Busy- busy with lots to do before he settles down to school four days a week!

I actually received an email this week from D'Juanna at MIRT asking how Tanner and I were doing and have been considering how to reply. The thing is, when Bonnie (Dr. Barlogie's right hand assistant) emailed months ago asking if she needed to be looking for a job for me, I emailed her back about my concerns regarding Tanner and I living in Arkansas, practically on our own, and that I was considering finding a doctor here locally. I never heard back from her so I've basically just stopped communicating with them; they don't even know about Tanner's recent surgeries.

I guess I'm going to go ahead and email Dr. Barlogie and let him know what is going on and leave the ball in his court. When we were last there in Little Rock, he made it pretty clear to us that he wasn't willing to work with Tanner having his tests here in Texas and gave us the ultimatum of moving to Arkansas before he was scheduled to return for his follow up tests in August.

He basically put it that if we wanted Tanner to have the best chance at a long life, we needed to live in Arkansas. The thing is, Tanner doesn't want to live the rest of his life in Arkansas - and though I'm his mom and my instinct is to always take over and make all of his decisions (even his medical decisions), this is his life, his disease, and his decision.

We talked to Tanner's counselor at the Oncology Department at Cook's Hospital and she made some calls and the lady at the Leukemia and Lymphoma Society said there are lots of places other than MIRT where you can get quality Multiple Myeloma care.

Tanner and Dr. Albritton

When we visited with Dr. Berryman at Baylor Dallas, he seemed to know all about the kind of treatment that Dr. Barlogie had given Tanner. He said that he wouldn't change any of Tanner's regimen and that he would be willing to work with Dr. Barlogie. I just don't know if Dr. Barlogie would be willing to work with Dr. Berryman. He just wants Tanner in Little Rock...

So... I'll email Dr. B this weekend and will let him know everything that has been happening and we'll see how it goes from there...

Internal Brace

2011-07-15T09:15:00.001-05:00

Tanner had surgery yesterday to place the rod in his left tibia and everything went off without a hitch. The surgeon said he had to make an extra incision on top of the leg because of the bone graft that was performed two years ago but that the rod went into place without too many difficulties.

The pain seems to be a little more intense than when they put the rod in the hip but, all in all, Tanner has been in good spirits since we made it to his hospital room. I can vouch for the fact that his appetite hasn't been effected at all. He had part of a turkey sandwich, half of a club panini, roast, broccoli, potatoes, and spice cake between the time he made it to his room around 4 p.m. yesterday and bedtime last night!

The nurse practitioner came by this morning and has already written orders that he can go home today as soon as physical therapy comes by and gets him out of bed to walk. She said he can put as much weight on the leg as he can bear and that he doesn't have to wear the leg brace anymore! He has an internal brace now!!

Once we get through these initial few days of the worst of the pain, he should be set to get on with his life!!

College starts August 29th!!

Another Surgery

2011-07-11T16:00:00.002-05:00

Tanner heads back to TCC in the morning to meet his granny and they are going to talk with the counselors and get things ready for him to start school in September. He’s already completed his FAFSA paperwork so now they can get started looking into grants and assistance.

We are so excited that he’s finally reached a point that he’s ready to move on to this next phase of his life. Tanner… College!! Future independence…

Thursday is surgery day again. They are going to go ahead and put the rod in his left broken tibia. Tanner is quite excited since this means he can get rid of the leg brace immediately after surgery. Just think, two years in either a full leg cast or brace! He just wants to feel confident in the strength of his legs and not be in constant worry about them breaking.

He’s working with me at the office this Monday putting labels on some of our newsletters. Between staying with Granny Jane for a couple of weeks taking care of business and coming to work with me, he’s getting a taste of what it’s like to have to be up and focused for hours at a time. It’s been over a year since he finished his home schooling so now he’s going to have to get used to having a daily schedule once again.

I’ve never heard back from Bonnie at MIRT since I emailed her about our concerns in regards to moving to Arkansas. August would be when we are supposed to head back up there for a follow up appointment, so I guess it’s time for me to bite the bullet and go ahead and contact Dr. Barlogie directly and let him know what has been going on. Heaven knows what his reaction will be. .. I guess we’ll soon see.

Hopefully, this surgery goes as well as the last surgery did and Tanner will be well on his way to a more normal teenage existence.

He and I both know that college won’t be easy, but he’s ready to face a new challenge. He faced cancer and look how that’s turned out… Yes, there were plenty of bad days – and yes, he made some mistakes while trying to get back to his life, but here he is… ready to move on.

If he applies himself to school with as much courage and determination as he did his treatment, he should do just fine.

Taking Care of Business

2011-06-28T14:01:00.004-05:00

I know I just posted yesterday... It's like all or nothing with me when it comes to the blog...

Tanner woke up this morning with his left foot swollen and red. I've called the doctor's office and left a message and sent an email. I'm hoping it's just a reaction from the dye used in the bone scan yesterday but the swelling and redness is all centralized in the left foot, so I just don't know. I told him to take some Benadryl and keep the foot propped up...

He's with his Granny Jane for a few days and she's helping him "take care of business". She's good at that sort of thing and from the number of calls and texts I've gotten from Tanner today, I think they are getting things taken care of!

They are supposed to go and visit some schools and check into some grants - so here we go, getting ready for him to move on to the next phase of his life.

Our friend, Shirley, (another patient from Little Rock) gave me the Facebook information for a man in his fifties here in Fort Worth who is another MM survivor (who has a blog). He works at Fort Worth Harley Davidson and I sent him a "Friend Request" a couple of weeks ago and he accepted. Tanner wanted me to email his information to granny's house so that he can reach out to him and possibly meet him... Maybe he can mentor Tanner to some degree and help him get focused on the positive side of life with MM...

We went to church again this past Sunday and, this time, Tanner attended the "Journeys" service with the other college age kids. When the regular service let out, I went out in the vestibule and Tanner was already waiting for me (the college service is a couple of blocks down the road from McKinney Church) and he said he walked down to the church with some of the other kids after their classes ended. He also said that he wants to go back and continue with the Jouneys classes on a regular basis so that he can get to know some of the other young people.

I, myself, have looked into some volunteer opportunities here in Fort Worth and Tanner saw the paperwork on the kitchen table and said that he wants to do some volunteering with me - so maybe we are ready to move on to whatever life has next in store for us.

We're moving on with our lives... Wish us luck!

When I stand before thee at the day's end, thou shalt see my scars and know that I had my wounds and also my healing... Rabindranith Tagore

Bone Scan

2011-06-27T12:18:00.002-05:00

I'm sitting in the waiting room at Baylor Dallas while Tanner is having a full body bone scan.

He came home from Montana full of wonderful stories of activities, new friends, dreams - and a sore left tibia. This is the area where the cancer was first discovered in June 2009 when the bone snapped in two and has been so slow to heal.

He did so many things... zip lining, hiking, climbing ropes, basketball in the pool... I think he over exerted the leg (though the right leg that just had the rod inserted has done great) and a knot came up and has been causing him some discomfort.

We went to the Orthopedic Surgeon's office on Friday and when they pressed on the area of swelling, he cried out in pain. They did x-rays and the nurse practitioner said there is a definite crack through the bone and she doesn't know if it's new damage or just the initial crack that still hasn't healed all the way.

She said the best thing to do would be to have a bone scan performed so they can check it out - and when we went to the schedulers office, we were surprised to see that they scheduled a full body scan instead of just the leg.

Tanner had a little bit of an emotional break down at the doctor's office and ended up in tears. It's been a while since he's broken down and I'm thinking maybe it had something to do with the fact that he was exhausted from surgery on the right femur followed by the trip to Montana.

He handles his health issues so well.. I'm surprised he doesn't have these emotional melt downs more often. I told him that I can hardly imagine how hard all of this is for him to handle and that all I could tell him is that I too, as his mom, have difficulties comprehending why this happened and that if I ever lose him, I will want to follow him. That's just how a mother's love works... Anyway... we ended up having a heart to heart in the doctor's office on Friday and today here we are, once again, at the hospital.

We are supposed to get the results on Thursday, but I've since remembered that he has chemo scheduled on Thursday so I'm going to have to do some rearranging.. He is actually hoping they will just go ahead and put in a rod in this bone too. He said it's been two years and he's tired of worrying about it breaking - and that when we go to Hawaii for his Make A Wish trip in August, he doesn't want to end up in the hospital...

I think it's because he has his mind set on para-sailing....

Camp Make A Dream

2011-06-20T21:09:00.008-05:00

I'm sorry I haven't been updating the blog. I've been in "withdrawn" mode lately...

Tanner is doing well and has been at Camp Make A Dream outside of Missoula Montana since last Wednesday. He's been texting and sending photos every day and it sounds like he's having the time of his life.

I know that he's feeling the sadness of his time at camp drawing to a close (they come back home this Wednesday) but he says that he's made lifelong friends. Everyone attending camp are all near his age and - each and every one of them has cancer.

I can't wait to get all the details when he gets home but I can tell you he hasn't let the cancer, the weak broken left tibia, or the recently placed rod in his right femur slow him down. He's been hiking, horseback riding, zip lining, and walking the tightropes 40 feet off the ground. They've had cookie bake offs, put on skits, and had some long discussions about issues that they all have to face when dealing with the impact cancer has on their lives.

He said they all wrote a message to someone who means a lot to them and hung the messages in the air. At the end of the week they will burn the messages so that they become "final". He told me he wrote a message to his cousin Kelson - who passed away with cancer shortly before Tanner was diagnosed.

He was able to meet his cousin Beth and her mother, Barbara, in Missoula this past Saturday and they spent some time together shopping and just hanging out. Tanner said they had a great time and I am so very grateful they were able to work their schedule out to spend some time with him while he was up there.

He texted me Sunday night and told me it was so beautiful up there and he wished I was there to experience it with him. I texted him back that he might be ready to move up there now. He replied that it would be a big change, but that we needed some big changes in our lives.

I hope with all my heart this trip was a life changing event for him. He has so much potential and I love him so very very much.

Life can turn in an instant. You could walk into an appointment one day and life as you know it can change in a heartbeat...

It's time to let go of the baggage and live this life with all the happiness, love, and hope we can grasp...

Successful Surgery

2011-06-04T15:40:00.002-05:00

Surgery was done Thursday morning and the doctor said that the rod was placed without difficulties and that there was no sign of active cancer in the large lesion in his femur!!

Just hearing the words made me realize how much I was worried that the lesion might still be active - and Tanner's granny and dad (who went back to see him first after surgery) said that he started crying when they told him that the biopsy showed no active cancer... so he too must have also been more worried than I realized... than he let anyone see.

He was hurting quite a bit so he and I both were concerned about how much it was going to hurt the first time he got out of bed, but it went much better than either one of us expected. In fact, he tells me that it helps with the pain when he moves around fairly regularly.

We got to the hospital Thursday morning about 6:45 a.m. and then arrived back home Friday around 4:30 in the evening and I have to admit, I can't remember the last time I felt that tired. There's something about sitting in the hospital that's just exhausting - and those pull out chairs aren't the most comfortable beds in the world (much less the fact that someone was in the room at least every two hours).

I think Tanner and I both slept the sleep of exhaustion last night.

Baylor Dallas was a new environment for Tanner and I both. They haven't had the last year and a half history of treating his Multiple Myeloma and I watched them all when they would ask him what was wrong... The looks that would cross their faces... The questions and concern that appeared in the resident's eyes after he asked if Tanner had been checked to see if he had lesions in the skull and was told that yes he does have some there - and all over his body; that in fact he had innumerable lesions throughout his whole body.

I know there are so many people, so may children, dealing with cancer (and other horrendous diseases) throughout the world - but this is my child and I absolutely abhor that this has happened to him. On the other hand, I've come to admire him so much over the last two years. I've watched him deal with the shock, sickness, and worry and I've watched him push it all aside and go on with his life. I've watched him learn how to laugh, love and live with cancer ever present in his world every single day...

Sitting alone, again, in a hospital room with my son lead to some more soul searching on my part. I need to find the joy in my days... that joy that I've lost... I need to do it now because, really, none of us know what tomorrow's going to bring.

Many of us spend our whole lives running from feeling with the mistaken belief that you cannot bear the pain. But you have already borne the pain. What you have not done is feel all you are beyond the pain.

Remiss

2011-05-29T22:15:00.012-05:00

I've been remiss in keeping up with the blog. I apologize... I've been so extremely busy at work that by the time I get home, the last thing I've felt like doing is sitting down in front of the computer again.

We visited with Dr. Nathan Gilbert this past week and Tanner has decided to go ahead with surgery on his right hip.

This has been his decision. He's the one who approached his Fort Worth doctors - and then also Dr. Berryman in Dallas - and asked to see someone about the lesion in his right femur.

The pain has been worsening and, from what I understand, it's almost like a toothache. That deep throbbing pain that is ever present. He can learn to live with it, but it's always there, and it wears on him day in and day out.

Then there's also the worry that he's been dealing with... the "what if the bone snaps"... "what if I make a sudden pivot on my foot and the hip bone just gives out"... "how long would I be disabled if the hip breaks"...??

As he told Dr. Berryman and Dr. Gilbert, it's been two years since his left tibia broke and it's only now healing; how long would it take for the femur to heal if it were to break? How long would he be disabled? How badly would it hurt? Could he be crippled for the rest of his life?

Both doctors told him that they agree with him. He's only 19 and will want to live as active a life as he can; he shouldn't have to live with the constant worry of his hip breaking...

When we went to see Dr. Gilbert, I thought he would talk about all the different options and we could just see what possibilities would be available. The next thing I knew, surgery was scheduled for this coming Thursday.

Of course, I'm his mom, so now the worry has set in... What if they shatter the bone? Multiple Myeloma bones are not like regular bones - what if something goes wrong? Then there's the fact that he's on Zometa (a bone strengthener) that hardens the bones... Dr. Gilbert has done this procedure on other Multiple Myeloma patients and it's not that I disagree with the idea of surgery, it's just that I'm "mom" and I worry.

Tanner tells me this is his decision - and I guess it's time I start letting go and letting him start to take control. This is his life and he's going to have to live that life with cancer every day for as long as he lives... I have to start stepping back and let him take the lead...

How did this happen? How did we come to this... to a place in our lives where I have to step back and let my son deal with decisions regarding his own cancer treatment? I've been "fine" all day... why do I feel like crying tonight?

You know me by now; tomorrow will be a better day... A day spent with my grandson and then a barbecue with friends!

"People are afraid of themselves, of their own reality; their feelings most of all. People talk about how great love is, but that's bull.... Love hurts. Feelings are disturbing. People are taught that pain is evil and dangerous. How can they deal with love if they're afraid to feel? Pain is meant to wake us up. People try to hide their pain. But they're wrong. Pain is something to carry, like a radio. You feel your strength in the experience of pain. It's all in how you carry it. That's what matters. Pain is a feeling. Your feelings are a part of you. Your own reality. If you feel ashamed of them, and hide them, you're letting society destroy your reality. You should stand up for your right to feel your pain.”..Jim Morrison

Dr. Robert Berryman

2011-05-13T23:51:00.000-05:00

Can you say "loooong day"?

I'm thinking I'm too tired to go into very many details tonight but I guess we'll see how this goes...

We arrived at the Sammons Cancer Center at Baylor in Dallas at 2:30 today and finally arrived back home about 7:30 tonight. Another tiring day...

But... Tanner and I both really liked Dr. Berryman. He apologized profusely for our having to wait so long (over 2 hours) and Tanner and I both told him that was ok; we have learned the art of patience the last couple of years.

We talked at length about the treatment Tanner had received in Arkansas and about the maintenance chemo he's still undergoing. He said that he wouldn't change anything about the program Tanner's on at this point and said that he would be glad to take the case - and work with Little Rock... I told him we would have to see how Dr. Barlogie feels about that since he told us he expects us to live in Arkansas by the time the next re-staging tests are scheduled in August (so that all the testing can be done at UAMS from now on).

Come to find out Dr. Berryman has met Dr. B - and has actually "followed" him in clinic at MIRT (so he knows how "passionate" Dr. Barlogie is).

He also went on and explained to us that his mother had died of Multiple Myeloma - which inspired his passion to fight this disease - and that he took her to Arkansas for an evaluation many years ago.

Tanner explained to him about the pain he's feeling in his right hip and Dr. Berryman said he has a couple of Orthopedic Oncologist Surgeons that he will call tonight and explain about Tanner's case and would like for us to come back next week to consult with them and get some of their ideas and possible recommendations.

He said that Tanner is a young man with "a lot of living in front of him" and he shouldn't have to be worried about having his hip break if there is something that can be done to prevent it from happening.

He also want's us to bring Trevor, my other son, with us to the appointment next week so that they can run a blood test and see if he would be a stem cell donor candidate.

He explained to Tanner and I that he's already had the best, most aggressive treatment that a person could have. He needs to be prepared for what to do if, in the future, he should relapse - and that that might be the option of a donor stem cell transplant instead of an autologous transplant... He explained that it's his job to always be looking to the future and planning for the "what if's". Tanner told him he's trying to do the same thing himself.

Suffice it to say, Tanner and I both were impressed with this doctor and look forward to hearing what the Orthopedic Oncologists might have to say next week.

I'll give more details soon, but right now I think I've had all I can stand for one day... Good night all...

A Long Day

2011-05-10T21:02:00.001-05:00

Today was chemo day and we were there for three hours when they finally came over to us and told us that they had "forgotten" to sign the orders for Tanner's medications and hadn't even ordered the chemo yet so, needless to say, it was a really long day...

Tanner seems to be doing fairly well except that he's having more pain in his right hip where the largest lesion is located (and he told me today also in one of his shoulders).

He want's to talk to an Orthopedic Surgeon about the hip because he's afraid the femur is going to break. When we asked Dr. Nicholas last year about the lesion in the right femur, he told us "we'll fix it if it breaks"... Tanner's thoughts are that if there's some sort of surgery they can do to help strengthen the bone to stop it from breaking, he would rather go ahead and have surgery rather than to deal with the pain and trauma of waiting for it to break.

My thinking is this might be just the beginning of having to deal with the discomfort and pain of Multiple Myeloma.

Dr. Albritton wanted us to schedule Tanner to start some phyisical therapy (to see if it can help with some of the pain) but I told the nurse I don't want anyone stretching and doing any therapy on him until we ask a MM Specialist for their opinion.

My fear is that someone not familiar with the fragility of MM bones might cause Tanner more harm than good.

Tomorrow we have an appointment to see Dr. Robert Berryman over in Dallas at 3 p.m.. We completed the new patient packet tonight and it said to be prepared to be there for 3-4 hours so tomorrow will most likely be another long day.

Since I'm thinking I'm going to get up and go to the office early tomorrow to get some of my work done before I have to leave for the appointment, I think I'll call it an early night tonight....

I'll let you know how tomorrow goes.

Maintenance Chemo - Again

2011-05-03T14:15:00.010-05:00

Last week Tanner started his maintenance chemo - again. This time seems to be a little harder on him than before since he's throwing up and and having "dry heaves" again... I'm not sure why the nausea is worse now than during this previous whole year of maintenance chemo - unless it has something to do with the fact that he hasn't had any treatment at all since January and his body has to get acclimated to all these drugs again....

I had a long conversation with Dr. Allbritton last week and to say she was a little "concerned" regarding our recent visit to Arkansas for the results of Tanner's restaging tests is putting it mildly.

She agrees that pursuing the possibility of local treatment is something that we need to explore and we have obtained referrals to a couple of different doctors in Dallas. I am in the process of scheduling Tanner for a "2nd opinion" appointment as soon as we can get him into one of their offices.

Dr. Robert Berryman is a highly recommended Oncologist at the Blood & Marrow Clinic in the Sammons Cancer Center through Baylor Hospital. He is affiliated with the Multiple Myeloma Research Foundation and participates in several of their clinical trials.

Dr. Larry Anderson from UT Southwestern Medical Center is another Oncologist who came highly recommended as a Multiple Myeloma specialist.

I'm hoping to get Tanner in to see one or both of these physicians in the near future so that I can get a "feel" for them and their treatment recommendations.

I've thought long and hard about all of this... Believe me, the concept of changing doctors is stressful (to put it mildly) but I feel that I have to truly look at all aspects of Tanner's medical care - and that has to include our ability to maintain "life", (i.e., food, shelter, and support) while he is undergoing treatment.

Sometimes people tell me they don't see how I keep functioning the way I do... How I "handle everything so well"... I tell them I have to "keep going " every day... But I'm struggling right now... Somtimes this being a single mother with sons is almost more than I can bear... I haven't lived up to the potential of motherhood the way I always dreamed I would... Sometimes it's hard to handle all of "this" alone...

There's a wall in front of me, I can see it, and I think I'm about to hit it...

Friends Who Understand

2011-04-26T10:20:00.015-05:00

While we were in Arkansas for Tanner's consultation (and additional tests) last week, we had an opportunity to go out to eat with some friends that we made while we "lived" in Little Rock for those six months during the most aggressive period of treatment.

Tom and Shirley rented an apartment through the "Home Away from Home" program across the street from us while Shirley and Tanner went through their chemo/stem cell transplant treatments and not a day went by that Tom didn't come over and check on us. He always made us feel like we had someone looking out for our well being. They made us realize we weren't truly alone all of those months (as we often felt) away from our family and friends.

Never once during that time did we ever have an opportunity to "socialize" (other than on "7C" or in the infusion clinic) so the opportunity to go out to eat during our visit last week was quite an event!

We went to On the Border (of course), and celebrated Tanner's 19th birthday - and also that he and Shirley both remain in remission after all these months!!

It was so much fun!! I was surprised at how excited I was when we had an opportunity to meet for dinner! When they walked through the door of the restaurant, my heart was filled with love and gladness - and as we were talking, we realized it had been over a year since we had actually seen each other...

Not many people quite understand what those months in Arkansas were like. The long days and nights of treatment and illness... and fear... The feeling of isolation as if your life is "on hold" while you deal with cancer, treatment, and everything that entails... while everyone else's lives back home go on without you...

They also grasp the feeling of anxiousness you experience when sitting across the desk from Dr. Barlogie - and then the overwhelming relief and joy that you feel when you hear the word "remission". They understand that you go through those same feelings every time you sit across from that desk...

Tom and Shirley (Anastasia & Harris - and the other friends we made during that time) truly know what all of those months were like - and that fact forms a bond that will always be with us. They will always hold a special place in our hearts...

No distance of place or lapse of time can lessen the friendship of those who are thoroughly persuaded of each other's worth... Robert Southey

Still In Remission

2011-04-22T23:59:00.004-05:00

It's been a really long week... and I have a lot on my mind... but I haven't been able to make myself sit down and write about it until now...

I've settled in for the night and I thought I would try to just go ahead and put some of this into words.

Let me start by saying, Tanner is still in remission...

They saw something on the original tests that made them think the cancer was probably back. Dr. Barlogie was looking through Tanner's file and you could tell he was agitated. He asked if Tanner was getting his weekly Velcade and Revlimid and I told him that he hasn't had treatment since January.

He looked at me like I was crazy and wanted to know why in the world not. I told him that his orders for treatment in Fort Worth had ended and that it had taken months to get the Texas Medicaid to approve Tanner's testing. He started yelling and cursing and asking me if I didn't understand the precariousness of my son's health. I replied to him that I had emailed him and his assistant Bonnie about the fact that Tanner wasn't getting treatment while all the insurance issues were being worked out (and they had both replied to me so I knew they were both aware of what was going on) - and he told me it was my responsibility to scream and shout and stomp my feet to make sure that Tanner was ALWAYS getting the treatment he was supposed to receive. I told him that I had emailed his office several times about Tanner's situation and that I counted on him and Dr. Albritton to communicate with each other about the care that Tanner was receiving. He told me that he was "one man" and "couldn't cut himself into small pieces" to always oversee all of his patient's care. He told us that the Pet Scan report from Fort Worth indicated that there were new lesions in Tanner's bones and that "it might be nothing" or "the cancer might be back" and if the cancer was back his chances of surviving decrease 50%-60%.

He asked me why I wasn't living in Arkansas and when I mentioned my job and that I have a house he told me I needed to decide what was most important - the things I have in Fort Worth - or Tanner's life. He was in too much of an uproar for me to explain to him my fears of not being able to support myself and Tanner in Little Rock - or the length of time it would take to sell my home - or my fears of how if I move to Arkansas and start over with a new job, who would take care of Tanner while I mainted a job if (heaven forbid) he ever did relapse and we lived there alone without a support system.

As upset as Dr. Barlogie was, there was no talking with him at that point. To say that he is "passionate" about his patients, is putting it mildly.

It was an emotional scary appointment and Tanner and I both ended up in tears. Dr. Barlogie took us to Bonnie's office and they called the Chancellor of UAMS and received approval for a free bone marrow biopsy and a new PET scan.

Tanner and I endured two days of living with fear of relapse in both of our minds. Thoughts of chemo, stem cell transplants, nausea, and fatigue were going around and around in both of our heads.

But... when the new tests were back and it was "all said and done" (like my Memaw used to say), Tanner is still in remission.

At the follow-up appointment, Dr. Barlogie sat across from us at his desk and told us that all the new tests indicated that Tanner is in complete and full remission and the "maintenance chemo" needs to continue just like he's had for the last year and that we are to come back to Little Rock in four months. He looked at me and asked if we were going to be Arkansas citizens by then. I told him I would do everything in my power to see that Tanner gets the care that he needs. He hugged me and then he hugged Tanner and held him close and told him that he loved him. Tanner replied and told him that he loved him too.

We have four months of treatment here at home to allow us time to decide how we need to procede with Tanner's future care. Do we attempt to talk Dr. Barlogie into trying to continue to work with Texas Medicaid? After how he reacted to the tests done in Fort Worth, I don't see him as willing to do that. Do we move to Arkansas and find a job and a place to live so that Tanner can receive care at UAMS and Dr. Barlogie can personally oversee his care? Or do I see if there is an experienced MM doctor here locally capable of giving Tanner the level of care that he needs to assure him the longest life possible?

We have a lot to think about....

In the meantime, my son is in "complete and full remission". Now we just try to decide the best recourse to keep him that way...

An Unforseen Result

2011-04-18T20:09:00.001-05:00

Well Dr. Barlogie didn't like what he saw on some of the reports from testing done in Fort Worth. He said it could be nothing -- maybe just the difference of the Radiologist in Fort Worth not being familiar with Multiple Myeloma -- but they want to re-do his tests here in Little Rock.

So.... we are staying a few more days and they are going to do some more tests and we'll see Dr. Barlogie again on Wednesday or Thursday.

The PET scan in the morning is at 5:30 a.m.so we splurged on a hotel room near the hospital and I think we are going to settle in for the night.

Needless to say, the day didn't go as we envisioned...

No Surgery

2011-04-17T19:37:00.004-05:00

We left for Arkansas on Friday at 5:30 a.m. and drove straight to UAMS for our 11:30 appointment with Dr. Nicholas.

He pulled up the CAT scan on the disk that we brought for him and said things looked pretty good. There is a small spot that isn't closed up and he pressed on the tibia where the break is and Tanner told him that was where it hurt (and is the spot where Tanner could see the bone move). The doctor said that where the opening is, the bone scrapes against muscle but that he thinks things have improved greatly since we were in his office six months ago and that we've "waited it out to where surgery isn't going to be necessary".

He told Tanner to just be careful and wear the leg brace when he's outside and active to protect the bone. I asked him if that meant Tanner should wear it when he is out in the front yard playing football. Dr. Nicholas gave him this shocked look, and asked "have you been playing football??". Tanner laughed and said he's just been playing catch. Dr. Nicholas said, yes that he should definitely wear the brace when he's playing catch and for us to come back in six months to have another look.

It was a long day and we were exhausted - but the news was good. Tanner can now go on with his life without worrying about the possibility of surgery... School... A job... A more complete life...

Now we just see what Dr. Barlogie has to say in the morning when we see him.

The rest of the weekend has been spent with Aunt Tincey, Julie, Trenity, and Alston. The kids have been gone most of the day down on the river riding four wheelers and Tanner has had a blast! It's been like a mini-vacation.

These last couple of days spent with family just relaxing and having fun were very much needed by both of us. Tanner had a bad day on his birthday and was in a really low mood. We spent a few hours at the hospital for his CAT Scan and had a lot of time together in the waiting room. We were talking about a lot of things going on in our family, our future, and his illness when he looked at me and said "Mom, I have a terminal illness". I told him that he couldn't think like that - and that I know it's hard not to dwell on the fact that there's no cure - that I also have a hard time. I said that both of us need to think about the fact that Dr. Barlogie has patients who have been in remission for over twenty years and that as young as he is, there's no telling how long he could live.

He says things to me sometimes that break my heart. We both live in fear and have to work at keeping it at bay. Some days (many days) are harder than others... His birthday was one of "those" days.

After the CAT Scan we met my cousin at Mexican Inn and Tanner was talking and ended up in tears - but after dinner he pulled out of the depression and things have been better. He has really enjoyed the time here with our family in Benton this weekend. It's been a good break for him.

I'll be sure to update and let you know what Dr. B has to say tomorrow!!

"Tears are words the heart can't express."

19th Birthday

2011-04-14T21:29:00.004-05:00

Tanner was born 19 years ago today.

I didn't know what was in front of us.

Wonderful days with family who would leave us all too soon.

Quiet days at home.

Vacations with cousins.. Fun in the sun...

Fishing with dad.

A frightening bone infection at the age of five (a portent of things to come?).

Then cancer... cancer... cancer...

Tears, heartache, worry, hope, determination...

Remission!

Blessed Remission!!

Happy 19th Birthday Boogie!

I love you no matter what...

Road Trip

2011-04-13T11:12:00.002-05:00

One more test tomorrow at 2:30 and then we are set to head off to Arkansas on Friday! We'll see Dr. Nicholas Friday at 11:15 and then will see Dr. Barlogie on Monday at 10:30. Woo-Hoo! I was beginning to wonder if we would ever get all of this taken care of...

Dr. Barlogie's Executive Assistant, Bonnie, and I have been emailing and she said that she would love to take me to dinner over the weekend if we could. She's a mother of four boys and I think she and I have a lot we can talk about. She is also trying to set Tanner up to meet a young man that she knows and thinks could be beneficial for him to meet and talk with while we are there.

Tanner is a very lucky young man to have so many people care about him.

He was diagnosed with Multiple Myeloma at the tender age of 17... was originally given only a two year life expectancy by the first Oncologist that we saw... and here we are nearly two years later.

Thursday is his 19th birthday - and he seems to be in full remission with the expectation of a lot of years in front of him.

I am so thankful for the medical team that has worked with us - both in Little Rock and here in Fort Worth. You couldn't ask for a more caring group of medical professionals. They have ALL gone above and beyond for Tanner and I both the last couple of years.

We found out our friends, Tom and Shirley, are also in Little Rock this weekend!! We can't wait to see them and hear what Dr. Barlogie has to say about Tanner and Shirley on Monday!

We also get to see Aunt Tincey, Julie and the kids!!

We miss our Arkansas family and friends...

"The excursion is the same when you go looking for your sorrow as when you go looking for your joy..."

Beginning's End

2011-04-06T13:46:00.013-05:00

Tanner will have a CAT Scan of the broken left tibia tomorrow (which was orignally broken in June 2009) at 1:45 at Cook Children's Hospital. This will be the last test needed at this time.

He told me he feels pretty sure that Dr. Nicholas will recommend surgery on the bone because, he says, he can see the bone move under the skin...

It's been nearly two years, I would think at this point they should decide one way or another if surgery is necessary or not. Hopefully we won't hear "let's give it a few more months and see".

Like I've said several times lately, Tanner is ready to move on with his life.

I have an agent I've worked with for over ten years... Chet-Chet... He would call me at least once a week the whole time we were in Little Rock while Tanner went through his treatment.

He was diagnosed wtih lung cancer in December and has gone through radiation and months of chemo treatment - and seemed to tolerate everything so very well...

Yesterday he found that the chemo has spread throughout his bones and that there is nothing more they can do and that at the stage where he is, he probably only has months to live - and that the bone cancer is probably going to be painful.

I sat at my desk in tears and then went outside and walked around for a while... He had been doing so well; everyone was sure the news was going to be good.

Today Chet called me (it's his birthday) and he sounded so good. He told me he didn't care what the doctors say, he feels like he's got at least a couple of years left. He isn't in any pain at all and is finally feeling better after all of the chemo treatments.

After talking with him, I can't help but contemplate life... I get so bogged down in the negative, the heartbreak, the turmoil... I haven't truly "lived" in a long time...

What am I doing?? I need to start living as if this is it - as if there's no tomorrow. It's time... It's time...

I need to find my happiness again.

Every new beginning comes from some other beginning's end...

A Sunday Search

2011-04-03T16:26:00.003-05:00

So, it was a bad morning. Emotional upheaval...

I was going to go to work later today, but it just didn't work out that way... Too many emotions... Too much chaos...

But... Tanner and I went on to church this morning as planned. We sat on the very back row (LOL) but we were there... The music was beautiful, the sermon was interesting, and there were literally hundreds of people there.

When the service was over, Tanner walked straight to the information booth in the lobby and asked about services for teenagers his age and the lady told him they hold services for teenagers and "young adults" in a building outside of the main chapel. He asked for brochures and told her we would be back next weekend - and he told me he wants to go to one of the young adult meetings and he thinks I should go to the adult-adult meeting (I guess that was his nice way of saying older adults without hurting my feelings).

We then went to Chipotle and sat on the patio and had a nice lunch and talked to a dad and his son who were sitting next to us - with their very well behaved Boxer named Hopper.

Now, I think it's time to head off to the park for a long (windy) walk...

All in all, it ended up being a Sunday of revelations. The first day in a new direction in search of happiness - or at least less pain.

Intuition is the clear conception of the whole at once...

Testing

2011-03-30T16:18:00.004-05:00

Tanner has had MRI's done two days in a row now. Tomorrow he has a PET Scan in the morning and then another MRI in the afternoon.

I've emailed Dr. Albritton's office to ask about doing an x-ray and possible CAT Scan of the broken left tibia (since that is what Dr. Nicholas always wants to see when checking for healing progress) but haven't heard back from them yet. I just don't want to get to Little Rock and they pull up the tests and need something that wasn't ordered.

The nurse told me that it shouldn't take long to get all of these tests on a disk after the Radiologist reads them and then they will overnight them to Little Rock. I asked if we should schedule our appointment for next week or the week after - but haven't had that question answered yet either.

My thinking is I should probably just go ahead and schedule for two weeks from now to allow for any unforseen delays in getting the results processed and sent to Arkansas.

Tanner and I both are just so ready to move on to the next phase of his treatment - and our lives...

We've had some long conversations the last couple of days going back and forth from these tests and Tanner tells me that he knows our extended family has pretty much fallen apart and that he's so very sorry for any part he's played in our difficulties. I was driving during that discussion and ended up in tears and he reached out and took my hand and said that he wants me to know that he loves me very much - and that no matter who might walk away from us - we have each other.

Sometimes, he's this rebellious 18 year old who drives me crazy, sometimes he's this sick young boy who scares me to death, and sometimes he's my sweet baby boy whom I love so very much.

I told him that I still feel like he needs to make some new friends and he told me that he thought I did too (LOL). He said that he thought it's time for both of us to make some of those changes that we've talked so much about over the last year and a half - so this Sunday we are going to go to church... It's been a while...

There is a large nondenominational church called McKinney Bible Church that has a large youth group and several adult groups. We've decided to give it a shot and, hopefully, it will open us both up to meeting new people. Tanner is so outgoing, he won't have any problems at all making new friends. I think this will be a positive step...

Dr. Albritton did tell me earlier this week that she has no worries about these tests at all. She feels completely confident that he's still in full remission and, at this point, we need to just see if the broken tibia is going to require surgery or not. So, no matter how rough the last couple of years have been (and it's been a roller coaster ride of emotions), we need to try and focus on the positive - and remission is about as positive as we can get.

Life can either be accepted or changed. If it is not accepted, it must be changed, if not changed, then it must be accepted...

In the Real World...

2011-03-27T02:02:00.012-05:00

Thinking, thinking, thinking... and not sleeping...

We all have dreams. I had dreams for my life. Tanner had dreams for his life. Cancer intruded...

Harsh reality faces us every day and we continue to make our way the best that we can. Sometimes our world goes astray and we have to rearrange our plans, our expectations, our dreams... and we go on.

In dreams we do so many things
We set aside the rules we know
And fly above the world so high
In great and shining rings

If only we could always live in dreams
If only we could make of life
What, in dreams, it seems

But in the real world
We must say real goodbyes
No matter if the love will live
It will never die

In the real world
There are things we can't change
And endings come to us
In ways that we can't rearrange...

In the Real World - Roy Orbison

Tests are scheduled

2011-03-22T09:31:00.017-05:00

They have finally scheduled all of Tanner's tests for next week.

Radiology Associates here in Fort Worth won't scan more than two areas of the body per session so they have split up Tanner's MRI's into three days (possibly four if they add another test that they are trying to ask Dr. Barlogie about).

He will have the first MRI on Tuesday the 29th at 6:00 p.m. so he'll get to eat a lean lunch and then nothing until after the test that afternoon, on the 30th he will have the second MRI at 6:45 a.m., and on the 31st he will have a PET Scan at 11:40 a.m. followed by another MRI at 4:30 p.m. - which means he won't be able to eat that day until all the tests are done.

I don't know what is worse, having one or two MRI's at UAMS that last 5-6 hours per session or having to go back day after day for continued scans... I would think several days in a row of MRI's will be harder on Tanner and I both...

The scheduling lady at Cook's Oncology Department said they might have to add another MRI (meaning another day) to what's already scheduled because Dr. Albritton has a question about one of the scans and needs to contact Dr. Barlogie to find out if it's necessary. That statement has me a little worried because I know Dr. Barlogie. If he's scheduled a test, then he's going to want the test to be done. If they don't do all the tests as he's ordered, I'm afraid we are going to get down to Little Rock and he's not going to have everything he wants; which is why, I'm sure, he would rather all the tests be done at UAMS. That way, he has control and everything he needs will be right there at his finger tips.

I'm hoping that if all the tests can be performed next week, we'll be in Little Rock by the next week. Tanner and I both are so ready to find out what the second year of "maintenance" will consist of...

Yesterday was my 49th birthday. 49.... Oh boy... Let's just say I shed a few tears yesterday while sitting at my desk.

It's not just the age thing. I have a hard time with my birthdays... I always think about my mom, dad, brothers, memaw, aunts and uncles that have all passed away. I think about my family that has grown apart... I always get melancholy on my birthday for what has been lost.

It wasn't all bad, I pulled myself together and I celebrated with those closest to me. I've thought about it and I would say, if you're able to celebrate your birth with the people you love more than anything else in this world, you would have to consider that a good birthday...

Trevor helped me work in the yard Saturday morning and cleaned up my car as his gift to me. Tanner, as his gift to me, took me to lunch (On the Border, of course) and then spent all afternoon just hanging out with his mom - and I ended Saturday with a late night walk under the "super moon"...

I spent hours Sunday working in my flower bed with my grandson, Beckett, and he loved helping me dig up the decorative rocks that had settled into the dirt over the winter - and I was given a nice shiney blower so that I could get all the leaves out of my flower bed without having to rake for hours on end...

Yesterday, at work, we had carrot cake and Qdoba for my birthday - and then last night I was taken out for steak and veggies!! All in all it was a very nice birthday spent with those closest to me.

But next year is 50... Think I will just run away for that one...

“I laugh, I love, I hope, I try, I hurt, I need, I fear, I cry. And I know you do the same things too..."

Waiting on the Schedule

2011-03-16T21:15:00.002-05:00

The appointment lady from Dr. Allbritton's office called yesterday and said they were in the process of scheduling all of Tanner's tests. She said Cook's in Fort Worth was really booked up and wanted to know if I would mind taking him to Hurst to have the tests done because they have a lighter schedule and could get Tanner in more quickly.

I told her I didn't mind where they were done as long as we could get them performed as soon as possible.

Later she called back and said that Cook's in Hurst didn't have the capability of putting all the tests on a disk so they were going to need to be done in Fort Worth which, in turn, means that they can't be done until next week.

Now I'm just waiting for them to call me back and give me the complete schedule so that I can call Little Rock and make Tanner's appointment with Dr. Barlogie and Dr. Nicholas.

Wouldn't it be nice if we could schedule them both on the same day? Last time they wanted us to see Dr. Nicholas on Friday and Dr. Barlogie on Monday...

My boss told me it would probably be just a one day trip to AR this next time and I told him I didn't know how easy it would be to find a day where we could see both doctors - and that I also have to have time to make my aunt some quiche... LOL! Tanner and I both really miss her, Julie, and the kids!

I've actually not even seen Tanner in two days (Spring Break and all the kids are in from school). When I'm home, he's gone and vice versa. I'm hoping he will make it in before I go to bed tonight... I guess he doesn't much need his mom any more... (Ok, he just came in and gave me a kiss and told me for my birthday on Monday, I can have an afternoon with him this Saturday. LOL!)

I only slept four hours last night so I'm hoping tonight will be a better night. Maybe it's age that's causing these difficulties sleeping. I see 49 staring me in the face next week...

I'm still working to pull out of the depression. Now that the time has changed, I have daylight for a while after I get off work so I stopped at the park and went for a walk tonight and then went to eat at Mexican Inn (good thing I had the walk first!). For the most part, I seem to have a better handle on things right now.

The future is no place to place your better days... Dave Matthews Band

A call from Dr. A

2011-03-11T22:34:00.000-06:00

All in all it was a good Friday... I made myself get up and go out for a while tonight instead of just coming home to a book and my bedroom. Part of the whole "get a life" and "enjoy 15 minutes of happiness whenever you can" thing...

I've been so immersed in misery, worry, and depression, that these last several months have been some of the hardest of my life. I've promised myself to take an active role in making myself stop all of the self pity and find some happiness in this life. It's time to heal...

Tanner and Trevor are in Abilene with their dad and Tan texted earlier that they will probably be home sometime tomorrow. I love my boys, but it's been great to have a few days to myself!

I went out for dinner this evening and when I got back in my car and checked my voicemail, there was a message from Dr. Allbritton...

GOOD NEWS!!

Tanner's tests have ALL been approved and will be scheduled for next week. On her voicemail she said she wanted to call and let me know so that I could have as good a weekend as she will knowing that this has been taken care of!!

She and the staff at Cook's Oncology Department are the best!!

To live is so startling it leaves little time for anything else... Emily Dickenson

Waiting, waiting, waiting

2011-03-09T11:31:00.012-06:00

I took Tanner to the doctor yesterday morning and they did a full lab workup (since he hasn't had treatment or labwork since January 21st). Dr. Albritton said that her insurance department misunderstood her instructions regarding Tanner's needed scans and they thought she only wanted them scheduled, they didn't understand that they needed to be pre-certified. This means that they hadn't done anything in regards to trying to get Medicaid to cover the requested tests.

She said she hopes they can get everything taken care of this week so that the scans can all be performed early next week. I guess we'll see...

She also talked to us about the option of moving to Arkansas so that Tanner can have smoother continuity of care for his Multiple Myeloma. She said that she understood Dr. B's asking us to consider the move since Tanner's healthcare for the next 3-5 years is of paramount importance - but that she also understands that if we go we would lose our support system.

When I think about packing up and moving to another state, I think of who all we would be leaving behind and I wonder how we would do on our own in Arkansas...

Tanner has lost touch with many of his friends since he's gotten sick and graduated High School and most of my immediate family have passed away.

I have my friends, Donna and Sandy, who have been there with me through it all for over 35 years now, I have my cousin Kirk, I have Tanner's grandparents Jane and Jerry, I have my friends that I work with, and Tanner has his brother, dad and step-mom... They all comprise our core support group. I don't know what we would have done without any of them this last year and a half. If we move away, could we make it on our own in a new state? Would I be able to make new friends, especially considering what an introvert I am? Am I being selfish even considering my ability to make friends when my baby's health, and very life, could be on the line?

There are just so many things to consider - though Tanner did tell Dr. Albritton that he is completely open and ready to move away and start over in Arkansas (or even just on the other side of town) and she said that maybe this is what we both need. A new start in a new place. She asked me if Dr. Barlogie had said they could help me get a job and I told her that his assistant did actually email and say that they have a lot of contacts and that they felt they could work things out for me and Tanner both. Another essential thing to find out is if any new employment would pay enough for me to be able to support myself and Tanner. Starting over would not be an easy thing to do on my own...

I told her that I wanted to make an informed decision. I asked her if she knows what doctors are available in the Metroplex area that have MM experience and she said that there are several at Baylor and Southwestern Medical Center in Dallas that would have extensive experience.

She said, and I agree, that at this point we just need to get Tanner's scans all pre-certified and perfomed, send them to Dr. Barlogie and Dr. Nicholas, and get Tanner back to Little Rock as soon as possible so that we can get their recommendations for what is next in regards to his medical care at this point.

She said that she would be more than happy to continue Tanner's treatment, whatever that will entail, once she finds out from Dr. Barlogie what that treatment needs to be. Being able to continue Dr. Barlogie's plan of treatment would buy us some time to get Tanner started on his next phase and then we can start checking out doctors here locally so that I can make an educated decision about if we should stay here to continue Tanner's care, or move on to Arkansas.

In regards to Tanner's broken leg and the possibility of surgery. I told her the nurse in Dr. Nicholas' office didn't talk like having surgery in Arkansas was going to be much of an option. The nurse had said that in order for Tanner to have surgery at UAMS many people would have to be on Texas Medicaid (anesthesiologists, pathologists, etc...) and that the best thing to do will probably be to have treatment for the broken bone in Texas. Dr. Albritton said that she would just like to get his recommendation since he's the one who has been overseeing the care regarding the broken tibia all this time and then, if surgery is in fact his recommendation, we can get him to an Orthopedic Surgeon who has MM experience. Even if that means we need to go to MD Anderson to have it done.

So.... at this point everything is still pretty much up in the air and we are just waiting to see what all the scans show, if and when they are approved and can be performed.

The doors we open and close each day decide the lives we live...

What can I say

2011-03-04T22:21:00.010-06:00

When you're young and you consider what you're going to be "when you grow up", you have all these grand visions...

Believe me, I never once envisioned where my life is now. Sometimes the pain and fear is so great, I can barely breathe. Like now...

I went out with my friend Donna tonight and I had a good time. We laughed and laughed - and all the time deep down inside me is this great welling pain. I come home and, once again, lock myself in my bedroom for another night.

Sometimes, it's almost more than I can bear to just place one foot in front of the other. I have to make myself get up and go through the motions and I keep waiting for things to ease. I keep thinking tomorrow will be a better day.

You have beautiful babies and you wonder what they will be when they "grow up" and you never consider one of them will fight great demons of mental turmoil and no matter how much you try, you can't "fix him".

You have these dreams and plans for your life and then you walk into a doctor's office one day and they tell you your baby has incurable cancer.

You try to get him the treatment that he needs to save his life and you have to fight these insurance companies every step of the way. The doctor says he needs all of these tests and the insurance company says no, there's no need for tests because the cancer doesn't seem to be worsening or progressing.

You wake up one morning and you get an email from the doctor and he tells you that it is "crucial that Tanner receives the best medical care possible for the next three to five years especially" and he asks you if you will pack up your son and move to another state so that he can receive that care.

You're born into your family and you think they will always be there and then they die too early, or you grow apart...

There are people you love and who love you and you think they will always be there for you and then one day you turn around and they are gone - and there you are...

Here I am...

Bronchitis

2011-03-02T18:26:00.003-06:00

Tanner seemed to be getting over the illness that hit him last week but woke up this morning without a voice and feeling a lot worse.

We went to his doctor's appointment a 1 p.m. today and Dr. Albritton didn't like the way his chest sounded (or the fact that he was coughing up blood) so she had them give him a breathing treatment and then sent us upstairs so that he could have a

chest x-ray.

She said that the x-ray didn't show pneumonia yet but that he has a bronchitis-flu thing and she prescribed a Z-Pak for him.

Her nurse told us that they lost two patients last year to the flu (one who had already completed chemo and was cancer free) so we needed to be really careful of Tanner's immune system. They explained to him why it's so important for him to take his antibiotics every day like he's suppose to.

She told us if he isn't better, or if he gets worse, in the next 48 hours he needs to come back in to the office before this weekend. She also said that they couldn't do his blood work today because the results wouldn't reflect accurately with him so sick.

She also talked to me about the insurance and hopes that the reason the tests are being denied by Medicaid is a "wording" issue with the way they are being submitted and that she's going to see what her insurance department can do - but that the tests will probably have to be done in Texas. I told her at this point, I just want the tests done. I don't care in which state they occur.

We crucify ourselves between two thieves: regret for yesterday and fear of tomorrow. ~Fulton Oursler

Honesty??

2011-03-01T19:33:00.004-06:00

The Medicaid coverage situation is still stalled out. I exchanged several emails yesterday with Dr. Barlogie, Bonnie, Caleb, and Sandra Wilson (all at MIRT in Little Rock) and they are working on getting the denial for the requested tests overturned.

I've had some people suggest just moving Tanner's care strictly to Fort Worth/Dallas but actually, from what I understand, the denial has nothing to do with whether the tests are performed in Texas or Arkansas but are instead based on the fact that Medicaid doesn't think there's reason to do further tests at this time. I don't think it would do any good to try and change doctors at this point at all. In fact, it would probably slow things down even further to start over with some other practice at this juncture.

Dr. Albritton's office contacted me today and she wants to see Tanner tomorrow since things with Arkansas have stalled out. It's been three weeks since he's seen a physician or had any kind of treatment and she feels that he needs to come in for a consultation. When I told Bonnie at MIRT that we were going to see Dr. Albritton tomorrow, she asked for me to have them do full labwork on Tanner so that they can check the status of his Mutiple Myeloma since he hasn't had treatment now for three weeks.

Some kind of flu bug made it's way through my household and, of course, it seemed to hit Tanner harder than it did any of the rest of us. He has been really sick and he and his brother, Trevor, spent most of their time in bed or on the couch all weekend long.

He seems to feel better today and he and Trevor are cleaning up our back yard and enjoying the beautiful weather while they can.

I'm sure most everyone must get tired of hearing me complain and whine on the blog about all of my worries, but I've been in a really bad place mentally for a long while now.

One of my cousins asked me the other day what happened to my "enjoying the moment" and not worrying so much but, no matter how much I might wish otherwise, I seem to have a hard time not obsessing about the future - or even the past - even though I know there isn't much I can do to change the facts of my life.

I'm sure it's been pretty obvious from many of my recent posts that there have been issues in mine and Tanner's lives over the last several months. Our extended family has fractured and this feeling of sadness and worry just permeates most of my waking moments.

I've come to realize that I base much of my happiness on other people. People who I love and who have come to mean so much to me over the years. The loss, and potential loss, of these loved ones has caused me to reflect on my life...

Am I happy with who I am? Are there things I need to change in my life that might make me a healthier person? How do I become a stronger individual? How do I become happier in myself? How do I learn to stop worrying about what I can't control? What does it take to become content in yourself and not count on others to make you happy? I'm nearly 49 years old and I'm still a mess; a work in progress...

I've gone back and forth about how much honesty, once again, to put out here on the blog. I don't want to hurt anyone in my family when their friends and family read something here - but on the other hand, I'm a pretty open person and have found that venting on the blog seems to help me in so many ways...

Last year Tanner was given prescriptions for nerve and pain medicines. As you can imagine, facing cancer can cause some serious depression and anxiety - thus the need for the nerve medications. Also, having over a hundred cancerous lesions in the bones throughout his body and a broken leg that just won't heal, resulted in some deep rooted pain - and so pain pills were also prescribed.

I'm just going to put it out here simply; Tanner became addicted to these medications. We've faced the issue and with the love and support of his family and some counseling and care by his doctors (who have been told everything), social workers, and counselors he's been doing quite well for several months now...

This last year Tanner saw, up close and personal, how addiction can, and does, impact our family. He's realized that he's not the only one who has to face the repercussions when he makes a mistake or a thoughtless decision. He's seen some serious pain...

For months now, he's been doing very well. He's trying his best to turn his life around, help me around the house, and be the person that we all know he can be. He's not perfect, but he is a sweet, good hearted young man and I couldn't love him more. I think he's going to be okay... I need for him to be okay...

A new low

2011-02-25T21:15:00.005-06:00

Ok, I thought the issue with coverage for Tanner's tests were because they were going to be performed in Arkansas. The lady in the insurance department at MIRT told me the reason given to her for the denial was because "peer to peer" is not an option.

I asked her if that meant they wouldn't cover treatment from an Oncologist in another state if that coverage was available from an Oncologist in the "home" state and she said she "didn't know" that she was "assuming" that wasn't what it meant... I don't know why she couldn't clarify what it meant???

Today, when I got home from work there was a letter from Medicaid saying that they have denied coverage because of several reasons, foremost being "The clinical information submitted does not describe a patient with Stage I "smoldering myeloma (cancer of plasma cells), solitary plasmacytema (tumor made up of plasma cells), or signs/symptoms suggesting progression of disease."

Another reason, "The clinical information submitted does not describe new or worsening signs/symptoms, or failure of laboratory tests to return to normal in this patient with history of myeloma (cancer of plasma cells). We are unable to authorize the above procedure based on nationally accepted imaging guidelines".

What? What??

Never once when Tanner was first diagnosed did his "laboratory" work indicate cancer. The first Oncologist we saw in Fort Worth told me that if they were basing his diagnosis on his lab work, they would think he was completely healthy. Without the full body scan, they would have never found the over 100 cancerous lesions throughout the bones in Tanner's body.

Now, Medicaid wants to deny any further tests because Tanner's lab work doesn't indicate the disease is worsening or progressing.

I'm really without words at this time....

Another bump in the road

2011-02-23T13:57:00.003-06:00

Well, the insurance person emailed me from MIRT this morning that all of Tanner's tests scheduled for this week have been declined by the insurance.

I've emailed Bonnie to ask if we can't just have Tanner's tests done in Fort Worth and have the results sent to Dr. Barlogie. I told her I would pay for the consultation with Dr. B so that we can receive his recommendations for the next phase of treatment if we can just get these tests all taken care of.

She emailed back and said they are working to find out why insurance will pay for the tests in Texas but not in Arkansas when they have signed up for Texas Medicaid at UAMS. She said the cost will be the same whether they are performed in Texas or Arkansas and will be no different in regards to the insurance.

At this point, they are calling a Director at Texas Medicaid to see what can be worked out, in the meantime, Tanner's tests have, once again, been cancelled.

I told her we are going on three weeks now that Tanner has been without treatment. She copied me on her reply to the people in her insurance office stating that this needs to be taken care of quickly and Tanner be brought back to MIRT as soon as possible.

So, once again, we are on a holding pattern while they are sorting out insurance issues.

Sick

2011-02-22T10:47:00.003-06:00

Well, I'm home sick in bed curled up with my laptop. Coughing, headache, lethargic, body aches, and chills...

I'm closed up in the bedroom trying to make sure Tanner doesn't catch anything from me.

This really needs to pass so that I can get him to Little Rock for his tests Thursday and Friday. One of my friends told me stress is destroying my immune system. Maybe he's right. I wish I was like all of those people who can just take things as they come and not worry about what they can't control. Me, I worry all the time...

Anyway, here's hoping this passes without Tanner catching it and that we are okay to make it to Arkansas later this week!

History.. need not be lived again

2011-02-21T15:57:00.002-06:00

I received a message from MIRT on Friday and they say they have worked out Tanner's insurance issues and they want him to come for all of his tests as soon as possible.

The only thing that will work with Dr. Barlogie's schedule is for us to come for his tests on Thursday and Friday and then wait to see the doctor on Monday afternoon.

They emailed me a copy of the schedule they worked out and his tests start Thursday around 12:30 p.m. and ends with an MRI at 7:45 p.m. We'll be there all day until late at night, will have to go back on Friday to complete the rest of the MRI, and then wait all weekend to be able to see Dr. B on Monday...

I asked if this just applied to Dr. Barlogie and MIRT and if we would need to see a doctor here in Fort Worth about Tanner's leg since Dr. Nicholas doesn't take Texas Medicaid and Bonnie asked me to give her a few more days to "work on Dr. Nicholas". I haven't heard anything back yet, but I'm thinking any surgery that might have to be done on Tanner's leg, will most likely have to be done by someone here locally. When I talked to Dr. Nicholas' nurse, she didn't seem to think it would be a big deal for us to see a local doctor; it's Dr. Barlogie who has issues with us seeing physicians who aren't experienced in Multiple Myeloma.

It will be a long few days but we are anxious to see what this next phase of Tanner's treatment will be.

History, despite its wrenching pain, cannot be unlived, but if faced with courage, need not be lived again... Maya Angelou

Still working on Insurance

2011-02-16T20:10:00.002-06:00

There's not a whole lot to post right now.

We are still in a "holding" pattern while the insurance people at MIRT are working to get everyone at UAMS that needs to be enrolled in Texas Medicaid.

I was told by UAMS that Tanner will need to have a Medicaid referral before we come back to Arkansas and that it was a "timely process" so I called his PCP's office today and talked to the lady in their insurance office about obtaining one.

She said in Texas you don't have to have a referral for Medicaid and that she doesn't know how you go about doing one and that Tanner will need to call Customer Service and ask them who she would need to call and how she would go about requesting such a referral.

Now, back when I worked for Dr. Miles and filed insurance for his patients, I would have made those calls myself - but they want Tanner to call for them to get instructions. I'll have to be around when he makes the call so that he can give them authorization to talk to me because he won't have any idea what to ask and most likely won't understand their instructions.

They must have had lots of ice in Little Rock also last week because Sandra Wilson in the MIRT insurance department called me last Friday and told me she was just now starting the process of signing everyone up for Medicaid because they had been frozen in. Tanner hasn't had maintenance chemo for over a week now.

Monday, Bonnie (Dr. Barlogie's Assistant) emailed everyone and asked what the status was because, she said, "this kid needs to get up here as soon as possible". Hopefully this all won't take too much longer.

I'm just ready to find out what the next phase is so that Tanner can start to move on with his life. He can't keep living in this holding pattern of waiting to see if he's going to have to have surgery on his leg or not.

A bit of good news, though, the Make A Wish Foundation called me and he has been granted his wish to go to Hawaii. They will be sending us to Uahu, (she said that's where they send everyone who "wishes" for Hawaii) for a week some time this summer. They've given me possible dates in May, June, or July and will let me know when the exact date is all finalized.

He's quite excited!!

We loved with a love that was more than love... Edgar Allan Poe

Holding Pattern

2011-02-09T14:20:00.003-06:00

Tanner had his last maintenance chemo at Cooks Children's Oncology Department on Monday and we are on "hold" for anything else right now.

I've received emails from Dr. Barlogie and Bonnie from the Myeloma Institute for Research and Therapy in Little Rock and they are in the process of getting the doctors who need to be involved in Tanner's treatment signed up for Texas Medicaid before they reschedule him to return for his restaging tests.

So, in the meantime, he is getting a break from any treatment right now.

I just got a text from our friend Shirley and she had her restaging tests done this week at UAMS and the doctor told her this morning - no signs of Multiple Myeloma anywhere in her body! Yay!!

Now we just pray that Tanner receives the same news when we get there!

Don't part with your illusions. When they are gone, you may still exist, but you have ceased to live... Mark Twain

A stumbling block

2011-02-04T15:34:00.011-06:00

Box seats thanks to Donna and Paul

I checked with the people at the Myeloma Institute in Little Rock about three months ago to ask if there would be any problems with the fact that Tanner's Cobra Insurance was running out on January 31st - after which he would only have Texas Medicaid.

I received an email from Dr. B's assistant letting me know that UAMS accepted Texas Medicaid and that it would be accepted just like if Tanner was receiving his care in Texas. I emailed back and asked her if she thought Dr. Nicholas (the Orthopedic Oncologist that Tanner has been seeing for his broken leg) also accepted Texas Medicaid and she said that coverage was "campus wide" and that everyone at UAMS participated.

I took that to mean that everything would be okay for this next round of tests that are scheduled for February 8th in Little Rock.

I called the Orthopedic office to check and make sure that they had Tanner scheduled to see Dr. Nicholas while we are there for all the tests next week. Kim (one of the nurses) called me back to tell me that she checked and that Dr. Nicholas isn't on Texas Medicaid - and went on to explain that many of the doctors, pathologists, and radiologists (including Dr. B who lost his TX Medicaid contract in 2009), aren't on the plan either and that we would be taking a "huge" risk of having to take financial responsibility for most of the charges that would be incurred if we come to UAMS for the scheduled tests.

I have to admit that I am really frustrated and upset that this wasn't explained to me more thoroughly when I called three months ago to check on this. If I had know that the Medicaid wasn't going to be accepted, we could have made sure that Tanner's appointments were all scheduled in January before the Cobra ran out.

Now, here we are and Tanner has been on Maintenance Chemo for a year and we don't know what the next step is supposed to be. Some patients stop chemotherapy at this point - and we have heard that other patients have been scheduled for another year.

I emailed Bonnie and Dr. Barlogie and explained to them everything I have discovered and Bonnie has replied to let me know that they are going to check and see what can be done. Dr. Barlogie is in Japan and they have to wait to hear back from him to see how he wants to proceed.

I asked Bonnie (and copied Dr. B on the message) if they could at least give me some direction on a clinic or Oncologist that they might refer Tanner to here locally in Texas.

At this point I don't know if we are going to Arkansas next week or not.

Tanner and I both have the utmost confidence in Dr. Barlogie and it's just scary to be here at the maintenance chemo one year milestone and have no idea what Tanner's next step would be - or where he's going to have to go for treatment in the future.

In the meantime, the Multiple Myeloma Research Foundation has some information on their website about a cancer clinic over at Baylor Hospital in Dallas that treats MM patients so I emailed them and explained a little about Tanner's case and am waiting to hear back from them. From what I could ascertain from their website, they do accept Medicaid so I'm hoping they might be an option for cutting edge treatment here locally.

Donna and Paul

I just wish I knew what Dr. B's recommendation was going to be...

I had recently come to the conclusion that I was going to "live in the moment" and enjoy my "15 minutes of happiness" whenever they occured. I had realized that I could only control myself and no one else and that I have to let go of the constant worry and stress - then something like this gets thrown at me and "living in the moment" is hard to gain all over again.

When Tanner's well being, and life, is on the line, I had come to count on Dr. Barlogie.

Letting go is the first step to gaining control...

Dr. Albritton

2011-01-26T21:53:00.008-06:00

I went with Tanner to his doctor's appointment this afternoon and I have to say, Dr. Albritton is the most caring doctor I've ever met. She spent over 2 hours today, personally, visiting with me and Tanner.

She met with us both in the exam room together and then asked me to step out and spent a substantial amount of time with him alone. Then she came out to the waiting room and talked to me and told me that she was more concerned about Tanner today than she has been in a long time.  She said that she felt he was very much "on edge". I had to explain to her about a family situation we've had recently and that Tanner is really burdened with anger, guilt, and hurt.

We discussed the fact that some teenagers confronted with a potentially terminal illness deal with the situation by treasuring most every moment of each day - and some teenagers begin to think "what's the use"... She's worried about where Tanner is emotionally and mentally at this point in his treatment - and which direction he's apt to go at any given moment.

At 17 Tanner was told that he had cancer, and not just any old cancer, but something called Multiple Myeloma - which is rare in itself - but almost unheard of in someone of his age. We were told that at the stage he was at, he might only have two years to live. He was forced to pack up and basically move to Little Rock where he started the fight of (and for) his life.

He dealt so well with the whole situation. He was told over and over how strong he was and what a good attitude he had. For most of six months he went through daily aggressive chemotherapy and two stem cell transplants - and watched some of the other patients, who had become friends, lose their battle with the same disease. He came back to Fort Worth and has undergone a year of weekly maintenance chemo during which, some of the time, he maintained that "positive attitude" and some of the time he sank into a dark place.

Thankfully, he has had Dr. Albritton there helping him these last several months. She was there for him when he was doing good and she was there for him when things were bad.  It was she that advised him that when things got bad again (and that they would), he had to pull himself back up and get right back on track - and that he couldn't give up.

After talking with us both yesterday, the next thing I knew, there was a social worker there and they took Tanner off to a room and visited with him for over 45 minutes while Dr. Albritton came out and talked to me at length. We talked about Tanner, my other son Trevor, and some of my other family members. I explained to her at length about several things going on in our personal life and she started doing everything in her power to see if she could find us some of the help that she thinks we might need at this point in our lives.

I've never seen a doctor who exhibits as much caring and concern as she does. We were blessed the day that she became Tanner's Oncologist here in Fort Worth.

Sometimes you have to decide when to battle and when to surrender. Sometimes it takes great courage to fight  - and other times it requires even more courage to walk away... Sometimes, when you come to a point where the hurt outweighs the advantage, you have to face the fact that it's ultimately less painful, and more healthy, to let go...

A little push

2011-01-20T10:25:00.003-06:00

Tanner has spent most of this week with Granny Jane and Pop Jerry. He's getting to eat really well and is completing a lot of those tasks and errands that needed to be done for a while now.

Granny took him to his weekly doctor's appointment yesterday and last night I dropped him off at Pappasito's for dinner. Cooks Oncology Department hosted a dinner meeting there where they discussed college grants and scholarships and career choices. Tanner seemed to have a good time and was full of information when he got back in the car. Now he just needs to put some of that talk into action.

Today he and Granny are supposed to look into some of the scholarships and grants available. He just needs someone to get behind him and give him a little push - and Granny is the one pushing!! Yay!

Trevor purchased a "new" little Honda yesterday so, hopefully, that will help him with the ability to get back and forth to work every day and become an independent young man.

I talked with my cousin Jesse today and he's going to help me get a few things done around the house in preparation for putting it up for sale. We are just going to wait for it to get a little warmer - and for Jesse to get some spare time in his schedule to work us in.

Tanner and I are ready to get out of Kennedale and start this next, new, chapter of our lives.

"Let your mind start a journey thru a strange new world. Leave all thoughts of the world you knew before.. Let your soul take you where you long to be... Close your eyes let your spirit start to soar, and you'll live as you've never lived before..."

Before and After

2011-01-13T20:23:00.016-06:00

Before

It's like I've had two lives. There's the life before my baby was diagnosed with cancer and then there's life after.

I find myself thinking often of the day that Tanner broke his leg. I remember being at work all day and getting a call from him asking if he could go to a friend's house to swim for a while and then later getting the next call with him saying that he had fallen and that he thought his leg was broken. I asked if he needed me to come and pick him up and he said no, that Rickey was with him and that they would drive back home.

They pulled into my driveway and Tanner was driving (he was worried about the insurance on the car)! He opened that car door and almost fell out onto the driveway. Short little Rickey came around the car and picked up 6 foot tall Tanner and carried him to my car and we headed off to the Emergency Room.

During

I was upset and worried because he was in such pain - and because it was so obvious that his bone was broken completely in two. Never, ever did a thought of cancer come near to entering my mind. Thoughts of the pain he was in, casts having to be placed on the leg, normal thoughts for a "simple" broken bone. Those were the thoughts in my head that night.

I think of those moments sitting in that exam room waiting on the results of the x-ray. As unexpected and stressful as it was to have to be at the Emergency Room for a broken leg, I had not a clue that those would be the last moments that he or I would EVER have that would be without the worry of "cancer" hanging over our heads.

After the pain pills starting doing their job and Tanner could relax from all the pain, there was laughter and talk - and no serious worries beyond having to wait for them to come back so that the cast could be put on the broken leg.

The doctor walked in and we smiled at him, clueless, and then he spoke those words that started the whole process that has forever changed our lives, "There is no easy way to say this other than to just say it, there's a tumor in the bone".

Tanner and I looked at each other and the worry was immediately in both of our minds... Cancer...

One of the first things he said to me was "Kelson". His beloved cousin Kelson who had just recently died, too young, after his own battle with this dreaded disease.

After

That was the first night of our journey down this new life with cancer...

A fresh start

2011-01-09T11:52:00.004-06:00

Well it's cold and raining and starting to snow so I think it's going to be a day to just hole up in my room reading and maybe watch a movie or two.

Tanner and I had a long talk this morning and I think we have just about decided to go ahead and get some of the work done around the house and put it up for sale here in the very near future. I think we are both ready for a fresh new start.

Sometimes you have to make a move, get away from the people around you, go somewhere new and just start over. I think that's where Tanner is, and in a way, I think maybe that's where I'm at too.

I was thinking about a small apartment on the other side of town maybe near Aledo or Saginaw - but Tanner was asking about heading up to Montana. He said he thinks we would both benefit from a complete fresh start somewhere new. Beth has mentioned that she could probably help me get a job in the lab where she works, and we really don't have much family left here in the Fort Worth area, but I don't know about going all the way off to Montana. It's cold and snowey - and how would we get back to Arkansas every four months to see Dr. Barlogie (Jane said maybe I could get a job at MIRT and we could move to Arkansas)?

I'm thinking maybe we should just start with the small apartment on the other side of town.

I can tell that he is really serious about making some changes to his life - and I've come to realize it's time for me to make some changes too. It's not all going to be easy, but something has to be done to get us headed in a new, positive, and healthy direction. Both of us....

Fort Worth Star Telegram Article

2011-01-03T08:24:00.001-06:00

By Robert Cadwallader
Special to the Star-Telegram

KENNEDALE -- Tanner Walker bought a cool, sleek metal cane to use when he starts college in the next six months or so.

But really, he hopes his purchase will be gathering dust in the closet by then. "I can already walk without a cane, but I get kind of sore if I don't use it," he said.

The 18-year-old Kennedale native has been working to get his life back on track since a broken leg in June 2009 revealed a type of cancer that almost never strikes young people.

The jolting diagnosis led to stem-cell transplants and aggressive chemotherapy at an Arkansas medical center, ongoing maintenance chemo treatments in Fort Worth, a possible surgery to repair the slow-healing fracture in January and a $400,000 pile of medical bills that his insurance company won't pay.

All in all, not so bad.

"I'm in remission," Walker said. "That's what I see as the big deal."

A minor bump

His troubles started innocuously enough. While washing his dad's pickup, he bumped his shin on a trailer hitch and didn't think anything of it until a large bump appeared several days later.

Initially baffled, his doctors eventually diagnosed multiple myeloma, a bone-marrow cancer rarely found in people under age 50. Scans showed more than 100 lesions.

"It was like the cancer was coming out of my bones -- it was pretty scary," said Walker, now grateful for his careless encounter with the trailer hitch. "They said that if I didn't break my leg it would have been a lot more serious than it already was. I was at the beginning of stage four, and within another few months it would have spread to my organs.

"So I thank God that I broke my leg."

His treatment at the Myeloma Institute for Research and Therapy, part of the University of Arkansas for Medical Sciences in Little Rock, appears to have worked.

His mother, Angela Walker, said she had little hope for him after the initial diagnosis. Survival of 10 to 15 years is common for adults given standard treatment at the institute. "When we first found out about this, they said he had about two years. Now they assure us he will live to be quite old," she said.

Medical costs

Finances are the second front in Tanner Walker's cancer battle. His insurance company declined to pay for one stem-cell transplant and most of the chemo, calling the treatment experimental and beyond the standard of care for treating myeloma.

The myeloma center's staff took issue with the coverage decision. "He was 17, and there's no one who has a standard on how to treat a child," said Bonnie Jenkins, a nurse and program coordinator for the institute. "We've been here 21 years at this institute. We've seen five kids under 18 [with myeloma] in our history."

A state law enacted a year ago gives patients new appeal avenues for denial of coverage for treatment that insurance companies deem experimental, said John Greeley, a spokesman for the Texas Department of Insurance. However, the Walkers' claims were rejected before the law took effect, so it can't help them. But they said their bills have stopped mounting since the state's Medicaid program started covering Tanner Walker in June.

Battling back

Walker has coped with other setbacks as well.

At Christmas time 2009, just after going into remission, he and his mom -- his parents are divorced -- arrived home from Arkansas to find their home ransacked by burglars. A few months later, another intruder stole his video game console.

Also, he's lost touch with most of his school friends, partly because of the cancer routines but also because he started a home-school program at the end of his junior year to graduate early.

Lately, his thoughts have focused on a career -- video game design -- and he has started visiting some area colleges.

Although he loves his virtual battles with video villains and opted for a somewhat virtual senior year of high school, Walker is ready for a brick-and-mortar college. "Going there made me feel excited about getting back into school because I'll get to see other people again," he said. "I'm excited just to be doing something again."

Now, he said, he's ready for the next phase of his life, and a counselor he sees on his visits to Cook Children's Medical Center in Fort Worth is helping "get stuff off my chest."

"Sometimes all this makes me feel sad, but I try not to let it get me down," he said. "I noticed that life goes fast, but I still have a lot of time."

Read more: http://www.star-telegram.com/2011/01/02/2739196/kennedale-teen-with-multiple-myeloma.html#tvg#ixzz19ywv0UWU

A new ending

2011-01-01T20:26:00.011-06:00

Happy New Years! I have to say I'm glad to see the end of 2010. Let's hear it for a new year; a fresh new year...

I was talking to a friend the other day and the topic of New Year's Resolutions came up. He said he didn't really believe in them. He thought you shouldn't wait for the beginning of a new year to make necessary changes and while I agree that you shouldn't WAIT for the new year to arrive to make changes to your life, I do feel like it's an opportunity to look at where your life is now, at this moment, and consider what you would like to change (or maybe just have to change) in the coming twelve months.

I mean, it's the very beginning of a fresh new year. January 1, 2011 and we really haven't had time yet to do anything much in just this one day. Are there some things you would like to change, need to change, or maybe just have to change to save your sanity? Some decisions you need to make? Some things you need to work out? Some things you need to leave behind? Some things you need to seek?

Wouldn't the beginning of a fresh new year be the perfect time to search your heart and decide what's most important? Maybe take some of those steps, no matter now painful, that need to be taken to become the person you know you need to be? Isn't this the perfect time to try to start to restore your heart and soul?

As I heard that a wise person recently said, "I can't control anyone but myself".

It's the end and the beginning of a year. The end and beginning; goodbye and hello...

I personally think this is the perfect time to take at least a few days to search my soul and consider what steps need to be taken to make this next year a better, healthier, happier time of my life.

I'm tired to the depths of my being of hurting. I need to become a stronger person. I need to heal.

Nobody can go back and start a new beginning, but anyone can start today and make a new ending...

Merry Christmas 2010

2010-12-26T06:44:00.003-06:00

Merry Christmas..

We had Beckett and Kelsey over for Christmas Eve and you could see the joy in Beckett's eyes.

Our Christmas Day wasn't what we expected but it's the second Christmas that Tanner has been with me since he was diagnosed with cancer so that's a blessed Christmas I would say.

I told my boys that families come in all sizes. Our's may be a small family, but we have each other.

I grilled chicken for lunch and then the boys and I went to see the new Harry Potter movie. They seemed to like it and since I've seen all the Harry Potter movies with my sons since the series started (and read the books) I enjoyed it too.

We have a Christmas event today at Granny Janes and Pop Jerry's house and then we can start getting ready to put 2010 behind us and focusing on 2011 and all the changes that are coming. Some I'm going to struggle with accepting and some I'm hoping for with all my heart.

This Christmas Tanner has remained in remission for a year. Like I said, that's the biggest blessing of them all...

Change

2010-12-21T13:39:00.002-06:00

If you knew that you would die today,
If you saw the face of God and Love,
Would you change? Would you change?

If you knew that love can break your heart,
If you're down so low you cannot fall,
Would you change? Would you change?

How bad, how good does it need to get?
How many losses, how much regret?
What chain reaction would cause an effect?
Makes you turn around, makes you try to explain,
Makes you forgive and forget, makes you change?

If you knew that you would be alone,
Knowing right and being wrong,
Would you change? Would you change?

If you knew that you had found a truth,
That brings up pain that can't be soothed,
Would you change? Would you change?

How bad, how good does it need to get?
How many losses, how much regret?
What chain reaction would cause an effect?
Makes you turn around, makes you try to explain,
Makes you forgive and forget, makes you change?

Are you so upright you can't be bent?
If it comes to blows are you sure you won't be crawling?
If it's not for the good, why risk falling?

If everything you think you know,
Makes your life unbearable,
Would you change? Would you change?

If you've broken every rule and vow
And hard times come to bring you down,
Would you change? Would you change?

If you knew that you would die today,
If you saw the face of God and Love,
Would you change? Would you change?