Continuing story in the hope some small part may be useful to others.
62 yr m. MM4yrs. BMT. Dazzled protocol maintenance.
Not chronological. Not sequential. Sometimes informational. Not always personal. Always truthful.
First impressions – posted
NOTE: Since these posts started suddenly I have not organized them. I’m not sure if I could at this point. So I hope the disarray you may find here doesn’t keep you from the first of the writings. In many ways these reflect the stream of consciousness nature of my last 4 years.
What was is no more when Cancer is found. Coming to that realization has been slow and fraught with fear, depression, denial, and occasionally hope as MM progress. I tend towards the optimistic which can keep me from understanding as quickly as others.
Cancer Care is at the forefront of Integrative Health Care. If you’re fortunate to have access to a Cancer center, though it can be overwhelming, consider your self fortunate to have all the resources made available to you and yours.
One could almost think you’re on vacation. Almost. Huntsman offers 6 floors of massage, acupuncture, exercise equipment, library, tables of puzzles and magazines. Private corners. Gourmet restaurant. Beautiful stone work. Hospital floor. Everything seems to have been done to make Cancer secondary. It’s not and you and hundreds other know it. Despite all this, going there is not something I relish.
I start prepping for appts a day or two prior. Long infusions require me to bring food and things to do. I wear and bring clothes for infusions. It’s often to cold. The 5 hrs. of Daratumamab mean I’m going to feel like I have the Flu for 1-2 days. Not to mention my discombobulated thermostat and all the sweating I do. I can change clothes 3 times in a half hour cause of the sweat soaked garments.
Anxiety. Something always lurking now. On Huntsman days and prior, it can be unbearable. Up early. Ready to go way too early. Labs (blood draws) to make sure I’m still of a piece. Then 30 mins waiting anxiously to see if anything changed. Fortune seems to be with me so far as, except during BMT, all my bloodwork has stayed normal throughout. This fact is probably the one thing I am always glad to be reassured about. MM’s insidiousness doesn’t stop at the bone level. As disease progresses, organs, struggling to keep going, start to wear out in t the struggle. I’m not sure how that looks to a patient, but it is something I hope to avoid.
Shared Pain is Lessened
Shared Joy is increased