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.


Author: sonorasam

Love cats. Gadgets. Reading history, physics, Natural History to Brian Eno. Enjoy Politics to keep my sense of humor sharp. Play country blues guitar. Amateur photographer of bugs. Think I can write (like all of us do). Mountains, Deborah, Everett keep me sane for the most part. Love the Internet, this wild, crazy, frontier that informs, democratizes us. Never thought I would be witness and participant in a culture and world changing technology, but here I am.

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