Thalidomide? Really???

Those of us elders may recall thalidomide. It was prescribed for morning sickness in late 50s or so. It was discontinued, today perhaps blackboxed because it caused severe, grotesque birth defects.

Similar to most chemo drugs, the derivatives of thalidomode – Revlimid, Polymist, Lenalidomide – are quite toxic. However over the years researchers found there were also anti-cancer qualities to thalidomide. When researchers manipulated the molecules to lessen the toxicity, it became one more choice in the arsenal against Cancer. I believe most MM’rs take or have taken one of these drugs over the course of their treatments.

Other Chemo meds are also very toxic by design. Cancer is a nasty mutation. Among it’s many qualities is survivability. It spits off cells that can hide for years until they metastisize from an unsuspected hiding place. Leukemia can cross the brain/body barrier and sneak into the folds and crevices of ones brain only to reappear in the end game. So it seems best practice is to hammer, pound, cut, chase, burn, do whatever to stop Cancer at first sight. Hence, why the LTS (Long Term Survival rates) are moving up albeit all too slowly for those of us with MM. And also why Cancer patients suffer the way we do.

In a macabre way, the MM demographics fall on folks around 65’ish, after a good part of life has been lived. On the other hand, if you’re like me, thoughts of not seeing Grandkids grow up are the most painful of all. Waterfalls of tears have been shed, still, when I think of this. I make no excuses for MM here. Cancer sucks at any time.

I mention all this because I hope patients ask for, and receive, all the Clarity they can from their oncologists about their therapy. It’s vital patients advocate for themselves. No changes may be made, but without clarity, any changes one might have available can’t be discussed.

It’s your life, not their’s.

Sam

Maze of Memory

Support. When I started this MM series of posts, I did have some goal(s) in mind. I thought, after perusing forums, boards, other Cancer sites I had experiences after 4 yrs of MM others might find useful.

Therapeutic. I have found myself fighting this MM funk and had yet to find a way through it. Each and every step required a reserve of energy, which, other than the doing of a thing, had nothing to do with the thing itself.

Information. I found, what I thought, too many posts & responses to be of a shallow character, not really, to my mind, either answering the question, or answering in a way that would give useful info. ( I am much aware of why this is so) There is so much info about MM available, as well as a lot of BS, I think it important to offer solid info and give others the chance to use as they can.

HOPE. Many inquiries come from folks after initial diagnosis. Surprise!!! You have Cancer!!! I believe a primary need at this point is to  offer HOPE. And there is much HOPE for living with MM. All the info, protocols, etc mean squat without HOPE. The MM is manageable. The Garden of HOPE has to be sown and cultivated.


The chronological order I had tried to impose on my MM experiences very quickly fell apart. Memory is an elusive and tricky adversary. I may start with a specific memory but inevitably I am led through the Neuronal Maze (hence Neuronal Catastrophe) of MM memories, ending far afield from where I thought I would be. I knew this was a game I had little chance, or desire, of playing. I apologize for the randomness of my posts for the 1 or 2 who pay attention. What is written here is the complete truth, at least to the extent mind reveals it as I write.


Shared Pain Lessened

Shared Joy Increased

Sam

First impressions

gofundme.com/srcbennett-funding

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.

Sam

Shared Pain is Lessened

Shared Joy is increased

Uncertainty

uncertainty and out lives

Article dealing with Uncertainty

Given I have Cancer, and I’m sure others are dealing with life events unexpected, uncalled for, and seem unfair. I though this article might provide a bit of hope. Though it’s clearly a ‘selling’ for book. But then I guess we all deal with uncertainty in different ways!

Dealing with Uncertainty