I’m a fighter–and I’m stubborn. I’m focused and willing to do just about anything to help extend my life.
I want to blow by the ten year survival mark. It’s a goal. I’m not afraid of dying; I just don’t want to miss anything!
Next summer’s Olympics. Who’s going to be nominated to run for president, and then who’s going to win? I’m naturally curious. Difficult or not, I’m thankful to be alive–and I’m willing to work hard to try.
I want to spend more memorable days like this one, when Pattie and I relaxed on a tour of nearby Cumberland Island:
But ten years is just an arbitrary number. Think my myeloma cares?
One thing for sure; it’s getting more challenging to stay alive.
Using thalidomide accelerated a number of unpleasant side effects for me. Substituting pomalidomide has scrambled my mind around the edges. Can’t you tell? I’m making more mistakes in my writing; mistakes I don’t catch. And I’m a bit out of it lately. I’m more forgetful. It probably doesn’t help that I’m still recovering from this summer’s modified (chemo drugs were added to my therapy, in addition to standard high dose melphalan) autologous stem cell transplant. It isn’t easy.
So I understand if other patients don’t make the choices I’ve made.
Monday I wrote:
Just because some of us are crazy enough to grudgingly grind through the pain to try and squeeze out a few hard earned extra months, doesn’t mean it’s the right choice for everyone.
I found a conversation with a fellow patient last week to be insightful and revealing. I was complaining that, even if the second (tandem) transplant next month totally wipes out my myeloma, the Mayo Clinic specialist who’s been kind enough to make himself available to me and consult on my case, Dr. Chanan-Khan, will still be likely to disregard the results.
To review, Dr. Chanan-Khan assertively recommended I don’t transplant at all. His approach would have been to try and control my myeloma using different drug combinations, including the yet to be approved immunotherapy, daratumumab. I liked his plan, but chose to transplant first.
I assumed his (hypothetical) reaction would be because the therapy I chose didn’t align with his treatment philosophy. But my friend made a great point. It probably isn’t all about philosophy; it’s more likely a reaction to toxicity.
Sure, assuming (hoping) the tandem finishes the job, clearing out all of the myeloma from my three or four remaining active lesions, how long will it last? Three months? Six months? A year? Is it all worth it: the travel, discomfort, risk of infection, the stress on my heart and three months (or longer) to recover?
And don’t forget that I’m projecting ahead. There’s a chance this second transplant won’t finish the job. Man, that would piss me off!
These aren’t easy questions. I’m strong–and stubborn. Part of me doesn’t want to do any of it. As Dr. Chanan-Khan (and a half dozen other myeloma docs) suggests, we could keep trying different drug combinations until something works. Hopefully the side effects would be manageable enough for me to feel good enough to stroll along the beach, living a relatively normal life for another year or two until my myeloma took over.
I want more. I’m willing to pay a steep price in order to try and extend my life.
Most myeloma patients trend older and/or aren’t as crazy as I am. Dr. Chanan-Khan gets that. In most cases, myeloma docs don’t think the added toxicity of uninterrupted maintenance, let alone one or two salvage transplants, are worth the risk and discomfort for their patients.
I get it. My only criticism: our doctors shouldn’t be making assumptions. They should lay out different options, letting the patient and their family decide. Our cancer, our lives, our choice.
I blog about the choices I do and don’t make, trying to help reader’s work through similar choices facing them. But today I’d like my readers to ponder the ultimate choice: when is enough, enough?
This month I received a telling comment in response to my monthly Myeloma Beacon column. A reader described the discomfort she’d experienced over several years, then added, “to hell with it all.”
She decided to stop aggressive therapy, deciding to “just live my life to the end.” Here’s more:
All those weeks of traveling to hospitals, doctor appointments, all the medications, nausea, fatigue and so on. I asked to be put on Hospice and am doing much better now. The nurse visits me weekly, I have a counselor I like, all my meds are delivered, someone comes and cleans my house and I actually feel better. Yes, I have disease progression and pain, but I’m not worrying about it and Hospice is helping me. I’m getting my life in order and spending the time I have left enjoying my family and neighborhood rather than spending it as a chemo patient.
I often hear from patients that make similar choices. It means so much to me that they’re comfortable enough to reveal that they’ve chosen a path that’s different than mine.
A number of them outlived the estimated life expectancy that their doctors had laid out for them. Two come to mind. Both lived well over a year, using nothing but melphalan and prednisone. As a rule, hospice doesn’t allow administration of life extending drugs, but melphalan/prednisone is considered palliative; a way to help control bone pain. I’m pleased to report that another is still living at home, hobbled, but able to spend time with her husband and family. It’s been almost 18 months since she choose to stop therapy.
This is so hard. I won’t deny that delving into heartbreaking queries like these can bring me down sometimes. You, too? But should it? Instead, shouldn’t we be celebrating lives well lived?
I think we all need a reality break. I know I do! I’ll write more about Gary Peterson’s enlightening myeloma survival statistics–and give my surprisingly (maybe not) cynical take on myeloma drug development–before they “nuke” me again up in Iowa.
Until then, feel good and keep smiling! Pat