It’s been a while since I updated this blog, and for anyone who occasionally checks, I’m doing very well. It’s hard to believe that it’s been sixteen months since the bone marrow transplant. A lot of water under the bridge, but still paddling the boat upstream. My last checkup was on August 1, 2013, and everything is progressing pretty smoothly. All the labs look very good. The blood counts are almost perfect. The red cells are finally coming up into the normal level, so the constant fatigue and perpetual state of anemia seems to be abating. This problem had a lot to do with still being on the antibiotic Dapsone for many, many months. It suppresses red blood cells. I didn’t know this until recently, when I finally researched the drug myself. I have constantly worried and fretted about the low red cells for a year, but all the medical people kept me in the dark about the side effects of this drug, telling me not to worry, and that this low red cell count could possibly be my “new normal”. All the post-transplant drugs are very necessary for sure for a period of time, but they all do have serious side effects. I purposely didn’t want to know any of these side effects while I was recovering or I probably would have refused to take any of these medications. By the way, I HATE the term “new normal” and will kindly ask anyone who uses it to please stop. Somehow this term has found its way into the way medical professionals relate to patients’ concerns. It seems to be a way to blow off patients concerns and questions, and sometimes it feels demeaning. Maybe it’s just me. I’ll get off my soap box now.
At my last checkup, I was told I could discontinue the last two medications I was taking: Dapsone (antibacterial) and Valcyclovir (to keep the shingles virus at bay). The doctor didn’t know it at the time, but I had already discontinued the Dapsone on my own as sort of an experiment to see whether this was the cause of the low red cells. And it was. I had also had an ongoing fight with trying to gain weight, feel at all hungry and to taste the food I was eating. I have basically been a little anorexic for months. Literally having to remind myself to eat, because I needed the nutrition. And nothing tasted as it should. Well, it turns out that these last two drugs had everything to do with that problem also. After being free of those drugs for a month now, my food battle is over. Hooray! I feel hungry, I eat and enjoy it, and I can taste food correctly again. No one can completely understand unless this has happened to them. It was absolute torture for many months. People would joke that they wish they had my problem, that is, that they wouldn’t feel hungry so they could lose weight. But I wouldn’t wish that on my worst enemy. It was very depressing, not to be able to enjoy myself with others at a restaurant or a party or whatever. Sometimes even looking at certain foods made me nauseous. Our whole culture revolves around getting together, having fun, talking and enjoying food. I am now free of all medications for the first time in two years. I still have a cabinet full of “just in case” medications for anything that may arise. Creams, ointments, eye drops, Prednisone, mouth rinses, etc. Anyone who has been through a transplant knows that there is a never-ending tug of war between GVHD and a period of calm. My GVHD seems to involve mostly my skin with occasional breakouts of what looks like acne on my face. And periods of intense itching other places, but no breakouts. I did get tear duct plugs in my eyes a few weeks ago, and that has helped tremendously with the dry eyes. My dry mouth has all but disappeared. I think that was a result of those last two medications also. I pray that this is all that will come my way.
My hair has completely come back — no bald spots — but it is thinner and very fine. Not my normal hair at all. And of course it is gray. I expected the gray color, but not the completely different texture and thinness. I would like to stop wearing wigs, but I need to consult with my hairdresser to figure out what to do about it. I have an appointment next week, so we’ll see. I have heard from some people it can take a couple of years for hair to come in “normal” again. Whatever normal is these days. This is another milestone for me. My last trip to the hairdresser was in April of 2012, for a shorter haircut, because I knew I would be bald soon after.
I feel physically very well these days. I have attended two semesters of art classes so far this year, and in a couple of weeks I will start the Fall semester. I jump in my car and go shopping or to a restaurant or to a movie now, without thinking too much about anything. There was a time when just driving to a nearby store would fill me with nervousness — I’m not sure why. I’m naturally a worry wart, but leaving the cocoon of constant monitoring and care by the hospital and medical personnel, and basically being let loose to fend for myself was scary to me. I might have been more vigilant about germs and other things than some people, bordering on being paranoid for a while, but it was the way I had to deal with the world so I could get through it. I finally had the last booster shots for childhood immunizations at my last checkup. I’ll get a flu shot soon, and I guess more immunizations will come next year.
Just mentioning “next year” fills me with wonder. I have been truly blessed in my recovery as it is progressing. The physical part is pretty stable and I am very grateful for that. The nagging thoughts in the back of my brain are still there about relapse, because I still have mixed chimerism. Eighty percent donor, and twenty percent me, give or take five percentage points. My doctor ASSURES me that I shouldn’t worry about it, that people are living full and healthy lives for many years with mixed chimerism. But I’m sure that anyone who has gone through a cancer diagnosis and recovery, no matter what kind of cancer, feels this dread at times. Every ache, pain, hot flash, dizzy spell, rash, bruise —– what is it?? Is it back?? And that brings me to the mental aspect of recovery. And knowing me, I will quiz him about this again at my next visit Sept. 26.
Mentally it’s very hard (at least it has been for me) to transition from a constantly monitored patient with a very serious illness and a transplant survivor, to a person who is back living a normal life again. However you define normal. Going through this whole process from spleen removal in 2011, to CMML diagnosis, to chemotherapy for nine months, to bone marrow transplant, to now recovery, is in itself challenging. When I started the transplant process in April 2012, I made up my mind that the only way I could get through it was to focus like a laser beam on almost nothing and no one but myself. It sounds so selfish to me now, because I really was worried about my family and felt so bad for them to see me like that. But I had to dig so very, very deep inside of me with prayer, faith, grit and determination to succeed, that it was necessary (I felt) to block a lot of things out. Other people have their own stories of how they got through it, but that was the way I handled it. And consequently, that has probably made it a little harder for me to now let go of all that intensity and to just chill out and enjoy life again. Getting back in the loop, the swing of things again. It’s hard to explain it to loved ones and other people in general, but I am trying. My goal now is to really work on decompressing. I feel like I have been in a way on another planet for a long time, and returned a few months ago. I have to get the lay of the land again. Life went on without me for a great while, and I’m re-learning how to fit in again.
So, as I said in the beginning, I can’t believe it’s been 450 days since transplant. And for everyone out there who is struggling now with going through this process, and your recovery is a series of ups and very bad downs, just keep at it. It’s the hardest thing you have every done. It will take time, but it will get better. Just know that I have been where you are now. All the aches, pains, rashes, diarrhea, G.I. problems, dry mouth, dry eyes, itchy skin, dizzy spells, weakness, insomnia, vomiting, appetite problems, nerve pain, anxiety, depression, the feeling that you could throw something through a window, but you were too weak, and a host of other things — it will for the most part be in your rear view mirror. It’s not all roses, but the thorns are few and far between. I will continue to pray for myself and for everyone out there who is facing this, that all will be well. World class hospital, world class doctors, world class medicines are all important, and I am so grateful that I have access to all of that. But what is really important is a world class attitude from each and every cancer patient that they WILL prevail and become survivors who help others on this same path along the way. So many of those survivors have certainly helped me. No one knows for certain about anything in life except for this — THE INCREDIBLE HUMAN SPIRIT.
I’ll update again after my next checkup at the end of September. Take care of yourselves.
Kathy, Nancy and I thank you for keeping us abreast of your progress. Enjoy the wonderful season of autumn and know that we are thinking of you. Jim Hoffman
Hi Kathy I so enjoy reading this, you write beautifully and I must say you really look terrific ! Do you mind if I share this journal with Kay Ohara, the lady who is dealing with this with her grandson?
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