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.


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


A decision I made

Multiple Myeloma revealed in hiding

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.

After 3 years of dealing with Cancer, Multiple Myeloma, I have been reading posts about others experiences and questions, I finally decided to start writing about my life with Cancer. To the best of my ability, I will NOT pull punches. Cancer is bad enough without flooding over true facts.

This is the first of what I will try and make a series of posts. May they be useful or at least interesting.

My MM experience

I have MM and have had for 4 years. I’ve been through the horror of the lightning bolt diagnosis and all that followed. I am incredibly fortunate to live in SLC and be near Huntsman Cancer Institute. As well as one of the countries top MM doctors.

The table was cold. Deborah, my wife had gone to get food as we had been in the ER for hours. A hand pulled the curtain aside and then with his back to me, slid it shut. He grabbed a chair, flipped it around, sat down, handed me the plain white paper he held out, saying, Sorry to be the bringer of bad news.

We had originally gone to the ER due to the incredible, intense, abnormal pain in my right shoulder. MRI, Scan, X-Ray, 4 shots of morphine later, doc says, We can keep you here and watch you overnight, send you home to come back if things worsen. Or we can do a scan of your thoracic spine. The only thing we see unusual is the elevated sediment in your blood. Which could be anything.

I inherited the genetic heritage of bad backs from my Father. Over the last 15 years I had 2 cervical fusions, 2 lumbar laminectomies. If that had been ALL I inherited, I would have rejoiced.

If you have a bad back, and we all do, your thoracic spine is NEVER scanned cause problems arise in your ass from sitting, or your neck from whatever. No one had ever asked me about this scan though over the last several months I had considered asking. The scan was choice 2 out of the 3 given.

So the doctor was returning with the results of that 2nd choice. The thoracic scan.

Sorry but it looks like you have Cancer. MM I think. He was a great doc with a shitty job to do.

Deb knew something was horribly wrong as soon as she shoved the curtain aside.

He says I have Cancer. 58. Always in excellent health. Almost retired. Cancer??? How???

The world, once wide open now narrowed down to 2 small blurry holes. Speech disappeared. What does one say on hearing those words?

We hear them all the time. On TV. From others dealing with Cancer. Fundraising. But Cancer is a malady for others. Not you. Everythings been done right. All your life. Where? How? You need to double-check the results.

I read folks questions, stories, hopelessness, misunderstandings, etc. I was surprised at the low level of info, the lack of hope in response, the turning around of the question so responder could have their own personal say. I think I can say I understand all this, but what people need, in my experience, is solid info and hope. They’re scared. In one ear. Out the other. Initial Diagnosis is NOT a good time to throw out technical info to a patient. All suddenly falls apart. Cancer, hidden and suddenly found, has sliced through ones life. As well as those surrounding them.

So given my situation and experience, I decided to respond with this essay in the hopes some small bit can be helpful. Part of my situation is perhaps a bit different. My son in law works at UU Hospital and my daughter works as a lab manager in Tucson. Therefore, I have access to ALL the info my doctors do. I can refer to the very same reports, studies my doctors use. No room for BS here.