Even when your health is perfect, many of us struggle in our daily lives. Whether it is your relationships, careers, finance, or any other thing, we struggle to make sense and make the most of what we have.
So when your health deteriorates, it’s even more of a struggle to balance those earlier things while also making the most of your health.
Yesterday Vicky and I believed we were approaching my time at Johns Hopkins. In preparation for a bone marrow transplant, I was scheduled for a Cardiology exam (ultrasound of my heart), a Pulmonary Function test (breathe into a tube multiple times), a CT scan of my sinuses, and a 12-lead ECG. While we going from diagnostic test to diagnostic, I received an email from my Kaiser-Permanente oncologist. Additional new tumorous lymph nodes were found. The bone marrow transplant would need to be postponed for a second time. I would now need a new chemotherapy protocol of Revlimid/Rituxan rather than Venclexta/Imbruvica.
My heart sank and I went into immediate shock. Vicky’s eyes welled up with tears. She immediately called and left messages with our Kaiser-Permanente Transplant Coordinator and our Johns Hopkins Transplant Coordinator to ask what this meant, what do we do next.
All of our preparations for the past month need to be stopped or postponed yet again. Vicky was preparing to take leave from her work as a nurse so she could act as caregiver while at Johns Hopkins. I had filed for Short Term Disability to begin this Friday so that I could attend a multitude of hospital visits and preparation for my medical stay at Johns Hopkins these next three months. Now all of this would have to be stopped and Vicky & I would need to soldier on. This is exhausting on us, our support network of family and friends, and our employers.
A friend told us yesterday of “compassion fatigue” as I voiced my concerns about it wearing us and our friends down. I hadn’t thought of that, although I certainly saw it in our own lives earlier. As family members and friends found chronic diseases and suffered year after year, it is difficult to summon concern each day when we’re mired in difficulties and daily struggles ourselves. It is true that human beings are best able to deal with immediate, short-term ordeals rather than long-term challenges and the suffering of others.
Just as compassion fatigue is wearing down our loved ones, exhaustion and fatigue are wearing us down. We’re going from a difficult chemotherapy to a worse one. Our Johns Hopkins oncologist called me yesterday evening to speak with me. He told me that my cancer is aggressive and has been unresponsive to the earlier treatments of Rituxan, R-CHOP, Imbruvica, and Venclexta. 80% of his Mantle Cell Lymphoma patients would have responded by now and been cleared for a bone marrow transplant. He told me he hopes that Lenalidomide works, but has a “Plan B” of clinical trials if this does not work.
For the past two months, I’ve been careful not to get sick during cold and flu season. Despite the holiday season of Christmas and the New Year, I avoided going out in the hopes that I would be healthy enough to go to a bone marrow transplant in January (and then late February or early March when it was first postponed). Yesterday, I came to the conclusion that my cancer is going to do what it wants to do regardless of what we do. Perhaps I need to throw myself fully into my job, my hobbies, my family and friends and live life as fully as I can? I tried being careful and preparing, and it made no difference. Perhaps now we should be prepared for whatever gets thrown our way, but to live life as fully as we can while we’re able?
I feel blessed to have come across the work of medical researcher Dr. David Servan-Schreiber who was diagnosed with brain cancer some years back and devoted himself to researching cancer from a holistic viewpoint.
As an engineer, I’m most comfortable with facts and the word ‘holistic’ itself sometimes gives me pause. But, David’s work was thorough and unaffected by non-scientific input.
He concluded that cancers were more metabolic by nature than a product of, as he put it, ‘genes gone bad’.
That was interesting, but what I found even more interesting was his meta-research on the effects of emotion and attitude in the cancer patient against the outcomes from a wide sample of patients with a wide spectrum of diagnoses.
It seems those who, as you so well stated above, lived their lives as fully as they could seemed to have more positive outcomes. What science supports this, I cannot say. But I took his advice on the premise that reducing personal anxiety surely would reduce the inflammatory pathways where our little zombies seem to thrive.
Thanks for pointing out the emotional strengths resident within all of us which may help us all arrive at a better place in the future.
This week has been “interesting” between Kaiser-Permanente, Johns Hopkins, and NIH. I got numerous calls and emails from each. My Stage 4 Mantle Cell Lymphoma is progressing. Usually 80% of patients would have responded to the first two treatments of R-CHOP and/or Imbruvica-Venclexta. All three institutions agree that my best option now is to begin Rituxan-Revlimid with several more cycles to follow or clinical trials. None of us know when I’ll be cleared or qualify for a bone marrow transplant now despite having a compatible donor and having postponed the procedure twice now.
The swollen and painful lymph nodes in my neck prevent swallowing, so I’m very familiar with that symptom when you mentioned it on your blog and Google+. I can literally say “I feel your pain”. It lasted for several months last year, and began again this month. I’ve been warned not to allow it to affect my weight too much. I’m down 5 more pounds in the last two weeks.
I’m seeing the effects of compassion fatigue among several of my co-workers, family, and friends. I can’t say I blame them. I’ve had cancer for over a year a now. I’ve gone through 3 different treatments (R-CHOP, rituxan maintenance therapy, imbruvica-venclexta). I’ve had more than 9 blood transfusions and been hospitalized numerous times. In the face of it all, who could fault family and friends at all for wanting to do their own things and get on with their own lives?
Honestly, my heart hurts at the thought of how much I’ve subjected my wife to this past year. I am convinced she is a Saint.
Like you’ve repeatedly told me, outlook and persistence is everything in cancer treatment. Between cancer, chemo, and the toll it all takes on the body, the ability to put on a strong face, to “grin and bear it” is probably the best thing you can do. I suspect the moment you stop is the moment it gets worse as you yield to the cancer and it’s ravages on your body.
I’m still trying to figure out how to deal with the personal anxiety aspect of it. I take Trazadone or Ativan periodically when the insomnia or anxiety become overwhelming.
I truly hope we get to that better place in the future.
I’ve been wondering about you Ken. I feel like I know you through your posts. I hope they manage your pain and keep you comfortable through all your many doc visits and procedures. You are young so please don’t give up hope. Best to Vicky and the pups.
Janet