Today is my the tenth anniversary of my CLL diagnosis.
In ten years a lot has happened.
I learned an awful lot about a disease about which I had previously known nothing. I researched, found, and still have world class care and treatment. I watched and waited. I then watched my lymphocyte doubling time soar in less than six months. I learned what FISH is and that I have a normal FISH panel. I also learned about ZAP-70 and IgVH genes and that I am positive for the former and unmutated for the latter. I went through six months of FCR chemo/immunotherapy with some complications which now seem minor since I survived them relatively unscathed, but at the time seemed insurmountable. I ventured into dark places and morbid thoughts, and came out on a brighter side with a Complete Response to treatment, leaving me with no detectable trace of CLL for five years.
Though there was no detectable trace, I had learned that the CLL was still there, slowly marshaling its resources until it could manifest itself again, a major battle having been won, the war not yet over. Eventually, relentlessly, the CLL showed itself again, though so far more well behaved than it was previously. I know that this could be merely a resting place for it to prepare its next full frontal assault, but I had assets, too, being prepared for a defense and counterattack. It ain’t over.
As Hemosapien told me ten years ago, “You will die from CLL, or from some complication caused by the CLL, or from something completely unrelated to CLL but with the CLL.” This has not changed in ten years though many things changed in the way CLL is treated. The researchers never sleep. They are hot on the trail for more effective treatment options for both the treatment naive and those who have exhausted all existing options. There is yet hope.
What has mostly changed, though, is me.
I have lived a whole lifetime in the last ten years. I experienced love, laughter, joy, pain, suffering, loss, music, friends, grandchildren, family, rewarding work, a sometimes exasperatingly hectic pace which sometimes eases into a delightful sluggishness, recognition and fulfillment in writing and music, the addition of many new friend, who, like me, have CLL, all of our stories as individually unique as the CLL that inhabits our bodies. It simply ain’t over until it’s over.
So, today, as I write this, thinking of the ruxolitinib trail I am on and how it has served me well for three years, of what seems to be its increasing ineffectiveness at dealing with symptoms, of my increasing WBC, my psoriatic arthritis and its unpleasant symptoms, and a host of other things I could list, which I won’t because no one wants or has time for the whole list: simply put, I am glad to be here. There has been a lot of living in the last ten years. I have every reason to believe that there will be plenty more. Time will tell.
No one can spend too much of their time worrying about what may occur in the future without wasting the time they have today. The exhortation “Make the most of each day” seems too easy, too trite as it rolls off tongues that say it with all the enthusiasm of those that ask “How are you?” when they expect “Just fine.” as the answer, unsure of what to do if they get a different answer.
I can say it and mean it, though. Make the most of each day. Make sometime for yourself. Make sure that your health-care providers are serving you. Be your own advocate. It’s not always easy, but few things worth anything are.
Feeling a bit nostalgic, and thankful, today, I sent a text message to Hemosapien:
Today is the 10 year anniversary of our first meeting and BMB [Big Grin] I’m glad to still be here. You’ve learned a lot in 10 years [Double Big Grin] For me and on behalf of all your patients, thank you for serving us so well!!!
I’d hug you if you were around! You keep it up and I’ll do the same.
He’ll get to hug me in November.
I sent an email to the physician formerly known as Mainmost, now “Sleepy” as he has since restricted his Internal Medicine/Pulmonary practice to Sleep Medicine, which is how I came to know him. He is the Doctor that first discovered what he suspected was CLL quite by accident after an abnormally high WBC on a follow-up visit two weeks after a week-long hospital stay for an unknown, un-diagnosed infection.
FYI Today is the 10th anniversary of you looking at a sample of my blood under a microscope telling me you thought I needed to see a hematologist right away. You called and set it up for me to see Hemosapien. I saw him the same day. He also used a microscope to view a blood sample and suggested a BMB, which he did the same day. It is indelibly etched into my mind how you both gave an involuntary wince as you gazed through the lenses at those B-Blasts. I knew that double wince did not portend well. 10 years later, I am still here, and doing remarkably well. My remission failed three years ago, but I have been on a two-year clinical trial at BATCC, taking ruxolitinib which is believed to suppress the symptoms of CLL, improving quality of life. It has been very successful thus far for me. The two-year trial is over, but I was asked if I would stay on since ruxolitinib has seemed in me and a few others to have had a positive impact on the root of the disease. I am progressing, but so far very slowly. I am in good hands with Hemosapien and Gooday at BATCC. And You!
Thank you for taking good care of me. I will be forever grateful.
Last year, Alabama beat our [Ole Miss] Rebels 66-3. This year, they beat us 62-7. We are at least moving in the right direction.
Yessir, thank you! Heh this past Saturday we got to feel what it was like to beat somebody like Alabama does!
We have to get some Ole Miss stuff in there, or hunting, or both.
And an email to Gooday and Nurse Alice at BATCC:
Today is the 10th anniversary of my initial CLL diagnosis. I am proud to be here. Life is good. Thank you for the care, service, and future you provide for all mankind. See you later this month.
Always a pleasure to see you.
He is always terse yet cordial in his replies. Nurse Alice is even more so. I may or may not hear form her. Usually I do, but it is enough to know she read my message and smiled.
When I go to BATCC later this month I will see many folks with CLL who are clinging with every fiber of their being to the last vestiges of hope that that place offers. Many will be in wheelchairs, on oxygen, pale, hairless, face masks on to help prevent a life-threatening infection, many refractory to each and every treatment available and too ill to be considered for a trial of any type.
Every story does not end well.
Then again, if survival is our goal, in the long run no story ends well, for in the end none of us survive this life we inhabit. That is not morbid thinking for there is great comfort in knowing that we each are part of the condition called humanity that infects us all. I never look at those whose situation is more immediately desperate than mine without the thought that I am looking into a mirror.
Having said that, the photo above is of all the instructors from the Monroe Mandolin Camp recently held at Lake Junaluska in North Carolina where I was privileged to serve on the staff. The joy of being surrounded by music I love, or being a part in creating the music I love with those very influential musicians who have mentored us and awed us for decades is nearly overwhelming. A couple of those shown are all time heroes of mine whom I had never had the pleasure of meeting, nor of hearing the sound waves between 20Hz and 20,000KHz come directly from their hands and into my ears as they play their instruments. Here, it was more than merely hearing; it was the opportunity to play music with them as they made the music that inspired us so much while they taught others to be better at it.
In case you were wondering, or even if not, I am the one in the photo whose moustache is far greater than the sum total of the rest of the moustaches, grinning like a jackass eating briars.
If you are a fan of Bluegrass Music, then some of the faces in the photo should be familiar to you. If you are not, well, why not? [GRIN]
I am thankful for so many things, including that you got this far in reading my blog. I have not written in a while as I feared I might digress into the fickle and obstreperous world of political commentary, and August is typically so hot here that the dog-days render us incapable of doing anything creative. This year September seemed worse than August. But October is here, still hot, and Nah! I made it fine through the political temptations. I made it through August. I made it through September. I’ll likely make it through the rest of October.
But if I can just make it through today, I’ll be able to wake up in the morning to see what tomorrow holds. I’ll do my damnedest to make it a good one.
Being thankful for what we have is a good start to any day.
©2018 Mississippi Chris Sharp
PS… I do not know where the strange, undesirable, line spacing came from. I used my regular template and this is what I got. I’ll fix it when I can.
One thought on “10/8/18 Ten Years with Leukemia”
Chris you are a wonderful inspiration to many, be it your music, feral hog killing or your bouts with your health. Thank you for sharing parts of your life with us, your readers.