I am reminded, whenever I am in the chemo room -- as I was Monday -- that there are worse things to have than chronic lymphocytic leukemia.
A man, three years older than me, in a wheelchair . . . Had a massive heart attack in 2001, died and was revived, six months of memory loss that led him to wonder why he had scars on his chest. Two more heart attacks.
He has myelodysplastic syndrome -- unable to create sufficient cells in the marrow. He lives on transfusions, goes in when the platelets get to 13. After getting red cells, he enjoys a hemoglobin of 10 for a few days until it starts dropping like a rock again.
He also has rectal cancer, spent six months with a colostomy bag, and is now refractory to the original treatment. Trying something new, hoping it works.
His wife runs their business, has learned the caretaker's art, deserves an honorary RN at this point. Jokes that they call him "la cucaracha" because he, like cockroaches that would manage to navigate the end of the world, is a survivor.
He makes jokes about "asshole doctors," manages some smiles. He's rooting for the Cardinals (this is Arizona). Life goes on.
My personal decision to restart my CLL (chronic lymphocytic leukemia)
treatment
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I have good reasons to believe it is time to re-treat my CLL.
Before deciding on the best therapy choice to treat my CLL/SLL (chronic
lymphocytic leukemia/...
8 months ago
6 comments:
Having been involved in healthcare delivery for my entire adult life I can assure you that many, many people endure much more than most of us with CLL.
Compared with what I've seen, my personal journey (though I'd much prefer to have avoided it entirely) has been rather mellow.
Often times I have advised (when asked) people to avoid treatments that offer little likelihood of saving meaningful time and great likelihood of detracting from life's quality.
Many illnesses cause daily disasters and or pain which make the worries of many relatively asymptomatic CLLers seem silly.
Once when I admitted how much this bothered me, you advised me that dealing with CLLers was akin to "herding cats". I do understand what you meant, and I do understand where these people are coming from. They can spend all of the time that they wish worrying and fretting.
If I (like Marley's Ghost) could walk some people through other's daily lives, I suspect that their perspectives might change. Alas, this is not possible, so I believe that everyone should have their own space.
In the meantime...remember that no matter how awful things may seem, someone, somewhere has it much worse. As for me, I'm not in a fox hole, a refugee camp or shark infested waters and I don't have any pain, so life isn't bad at all.
As to "la cucaracha"...if the Cardinals win I know that he'll be happy, but I'm an E-A-G-L-E-S fan (you have to be from near Philly to understand that).
Good luck with your treatments,
11qRick
David and 11qRick - thank you - your words of wisdom do put things in perspective and I agree with you both.
Keep up the diary David, I read it often and I wish you all the very best with your current treatment.
J
Australia
Davie,
I am reminded of similar thoughts whenever I go the oncologists office. Best of wishes with your treatment.
"Life goes on." Until it doesn't.
Thankfully, most people never get to the point of this patient. Better coronary care for one thing has offered a better life for millions.
One can only have so many transfusions until the body builds up so many antibodies to them, then they don't work, so they say.
One must remember that, unlike many other cancers, there zero chance of a cure for CLL. That point was brought home when I was reading about radiofrequency ablation for renal cancer. The three-year freedom from relapse was on the order of 97%.
Contrast that with the survival curve of CLL, which is steadily, depressingly, downhill, without break, without plateau.
David,
Have you encountered any information regarding massage as a way to shrink massive neck lymphopathy?
I understand that people with edema can reduce their swelling by 50% with modalities like the Vodder massage technique which integrates an awareness of lymph node pathways into the massage treatment.
Mark
Mark,
In answer to your question, no. From everything I have heard, massage seems to have no effect on CLL-filled lymph nodes. In fact, CLLers with bulky nodes and spleen need to be careful about deep tissue massage, anything that could cause a rip or tear in swollen tissues.
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