Speaking of dex (see Wednesday’s post), the much maligned steroid and a GI tract recovering from a pair of stem cell transplants and a three week long bout with C. diff don’t mix. My gut is in knots!
I’ve had some indigestion each week I’m on 40 mg of dexamethasone in the past, one reason I take omeprazole each morning on an empty stomach. That wasn’t enough this week. All I can do is hold on and hope my body adjusts–and that I don’t backslide into the world of endless diarrhea again.
Now my topic for the day. As I wrote my heartfelt memorial post about Sara yesterday, the thought occurred to me that too much of this type of thing might freak out and discourage newly diagnosed readers. I’m not talking about an occasional obit now and then–we all need to remember the myeloma heroes we’ve lost. I’m talking about watching late stage patients like me deal with end of life issues.
I want to start writing more about palliative care. About hospice. About the stress living long, chronically ill lives has on our friends and caregivers.
I remember one of the first questions I had after I was diagnosed was, “What is it like to die with multiple myeloma?” Not an easy question to find an answer to. Who are the best myeloma specialists to work with when many others have given up? Which clinical trials are the best shots for those who may only have one shot left?
Some exposure to the realities of living–and dying–with multple myeloma is a good thing for the newly diagnosed. But too much may cause some to tune out. I’d hate to see that. Up front learning is so important to help doctors and patients work as a team to make educated therapy choices.
Even though I’ve always tried to include news that was important for myeloma patients here, too, I concede this blog is about my long and winding myeloma journey. But patient education is such an important issue for me–the more up front the better–I hate to leave that key part of my writing behind.
I own the rights to several web addresses that might work if I/we decide to make a split. For example, I’m not doing much with HelpWithCancer.org. these days. Or MyelomaNews.com could be a good way to help bring newly diagnosed patients up to speed, while including news about FDA approved drugs, important debates about the value of Total Therapy and allogeneic stem cell transplants. I posted news blips on Myeloma News for several years; research news I didn’t feel was ground breaking enough yet (a lot of sub clinical stuff) to write a daily post about. Remember, except for around ASH and ASCO time, I’ve tried to stick to the rule of one post on MMB a day; an argument for not producing a spin off. You know, my trying to have a life that doesn’t center on myeloma 24/7.
Spending countless hours getting ready for Pat’s Myeloma Beach Party. Trying to finish my fifth books. Still not feeling well much of the time. A wife who wants and needs more attention; who’s longing for a normal life. My monthly Myeloma Beacon column. Blogging for the MMRF. Consulting for Tadeda. Doing broadcasts on Cure Talks and Myeloma Crowd Radio. I’ll be the first to concede it can all be overwhelming.
But bear with me. Back to my premise. I also own LateStageMyeloma.com. I could split out some issues important to those of us at the tail end of our myeloma journey and run them there. Regardless, I would share links to important cross over stories, so regular readers don’t miss out.
More work? You bet! Another option is several tech volunteers and I are considering revamping my site. Maybe I can create a weekly column for newly diagnosed patients. I’ve even looked at merging with Jenny Ahlstrom’s Myeloma Crowd site; her husband using a brilliant team of paid technicians that she’s able to borrow from time to time to help her do some amazing things up in Salt Lake City.
Honestly, I may be too independent for that.
You need to understand. I hear from MGUS and smoldering patients every day. They’re often more upset and unsettled than a patient facing a relapse down the road. Should they really be reading about my search for one last therapy to help extend my life? Too real?
Should I keep on doing what I’m doing; mixing in news appropriate for new and experienced, late stage patients. I can see the value in it. We can all learn from each other, no matter where we are on our myeloma journey.
One thing’s for sure. A new, second site wouldn’t feature daily posts. Too much work!
I remember touching on this subject in the past. A few readers chimed in, most suggesting I keep on doing what I’m doing. I’m OK with that. Regardless, I’m going to start including more content for new patients. And some–for patients like Sara–that have or are running out of options.
I’ve always argued that, “This is our site, not mine.” What helps you most? What’s most important to you? I would appreciate your feedback.
Feel good and keep smiling! Pat