“Science without religion is lame, religion without science is blind.” – Albert Einstein
I’m not a particularly religious person, but I am a devoutly spiritual person. I guess you could put me in the category of all the weird new age stuff, although I would reject that label. I just found my way with some help here and there on things that seemed to align with my way of thinking. I look for practical applications that will help me in life while embracing a spiritual viewpoint about it all. So I would agree with Albert here. I think the two go hand in hand and don’t need to negate one another – generally speaking.
I was struck today as I was pounding around the net that while we have some fresh new drugs and we have extended MM patient’s average life expectancy from 1-3 years to 5-7, and I daresay we are on the cusp of 7-10, it seems like a lot has not changed. That can certainly bring a sense of frustration. Then the other side of the argument is how robust the research is. How active the community is (always has been but it just keeps growing and growing). That we do have new drugs and combinations of drugs to “play around with.” New things are on the horizon, and we are all anxious for news. We hear a measles vaccine has put patients into CR, and we rejoice and scramble for more information. Only to discover that it lasted about six months and the beast was back. It makes it fascinating from a researcher’s point of view to overload a patient with measles that arrests or eradicates Myeloma, and thus studies ensue.
They’re treating smoldering patients now if they have high-risk genetics. Controversial at the time it was suggested, but more and more think it makes sense.
Stem Cell Transplant is still the most often used treatment. Studies are still showing it to be the standard. Tandem is better than single and single better than none unless you have other health issues. However, it is all still being robustly argued, and that can create frustration for all concerned. (And some GREAT doctors don’t do SCT that I would trust now when I wouldn’t then.)
Younger and younger patients continue to be diagnosed (I recently heard of a 13-year-old!), often after a catastrophic incident, because they surely don’t fit a Myeloma profile, and yet it is still listed as an average age 65 and over, African American Male. The “Ultra” High-Risk patient has made little progress in extending life expectancy, and it’s a brutal though noble effort.
Our drugs are still too expensive (as in, ARE YOU CRAZY expensive!) and we still battle insurance coverage and copays. Patients are still opting to be treated by the first doctor they are referred to in their local hometown. The Leukemia, Lymphoma Society still hasn’t given us the letter ‘M’ in the LLS acronym, yet they are “there for us.” Myeloma is still rarely listed on a death certificate.
As Dave and I re-entered Myelomaville in 2015 as a relapsed patient, we have embraced the breakthroughs and sighed through the continuing debate for the best treatment course and seemingly lack of forward progress. Which really translates not to a lack of forward progress (because there has been), but the ever illusive cure.
“Life is change. Growth is optional. Choose wisely.” – Anonymous
So, much is the same for us. We simply are grateful we have a superior medical team that we can work with, and who puts up with our stubbornness and questions. Dave’s quality of life is important to them. Our local is helpful and supportive.
What’s different on a personal level is Dave is much more engaged as a patient this time around. So when I mentioned before about new dance steps, I wasn’t kidding. He asks a lot of questions as if he were a newly diagnosed MM patient. I was a little embarrassed at first, but the nurse told me it is quite common. The first go round Dave was too hammered and impacted by the disease to do much more than go here and sit there and do that. This time around, he isn’t as impacted, he’s more interested and curious about what is being asked of him and making decisions about that. My job is fundamentally the same, but what’s expected of me from him is a little different, and so we continue to make adjustments.
I won’t lie to you; I wish we weren’t at this juncture. I wish we were still blissfully doing our thing without much discussion of Myeloma. Like before, however, I am acutely aware of the many blessings we have as we move through this and I’m more grateful than distressed. I’m also still optimistic and feel as though we are so very close to making some significant breakthroughs.
“Courage is being scared to death… and saddling up anyway.”
– John Wayne
So the truth of “pounding around the net” today was me looking up Allo-SCT and Mini Allo-SCT. Another MM patient has just gone through the haplo-allo with their son’s stem cells. I kinda had to laugh because my own blog posts came up on the subject (of Allo). Well… So I reread what I wrote, took out a bad link, added an update of information I had learned and another link to a paper on the subject. So a sigh and a chuckle.
