Should I suffer silently or “share the pain?”

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I can’t help feeling like my body is starting to break down.

I still haven’t adjusted to my body’s need to “stay on schedule.”

I felt so good early in the week. I was at the end of my two week break between Velcade cycles–and I was still early in my current 21 day Revlimid cycle, too.

That is, until last Wednesday’s Zometa infusion.

For years, Aredia had been my doctor’s bisphosphonate of choice. But after reading emerging data touting Zometa’s ability to slow the development of bone lesions in addition to repairing existing damage, I agreed with my doctor and made the switch to Zometa six months back.

Having used bisphosphonates regularly for five years, I am only scheduled to receive a Zometa infusion every ten weeks. And that’s probably a good thing, since my post transplant body has trouble handling it.

No big deal.  Just some extra bone pain. That is until this past week. The day after my infusion, I felt pretty bad. Bone pain. Check. Flu-like symptoms.  Check. Stiff muscles and joints. Check.

So what? I deal with a wide variety of aches and pains day in and day out.

The fact that I had used Zometa from time to time before my transplant, and never experienced any measurable side effects makes my point; new immune system, new challenges.

YES! I can deal with any uncomfortable and inconvenient side effects Zometa–or any other drug I take–can hit me with. What I have difficulty handling is trying to juggle two or more “changes” to my tightly regimented daily routine.

Thursday, I didn’t feel well. I broke from my low carb diet and indulged by eating too much of the wrong things.

BIG MISTAKE!

Already a bit bloated from my Zometa IV, my body swelled-up like a blow fish. And it wasn’t dexamethasone, which I only take on Wednesday’s following my sub-q Velcade injections.

Bloated, water retentive body means swollen joints and lots of rib pain.  Why rib pain? More mass around my middle presses-up into my ribs, aggravating rib damage caused by my undiagnosed multiple myeloma from years back.

I will never forget seeing the digital images of my damaged ribs from the MRI.  Two or three inch sections were gone–replaced by a dark, spongy looking material straight out of a horror movie.

Apparently, once a section of rib is gone, the body cannot replace the bone…

I can deal with water retention. Or bone pain. But add the fact I feel–well, like I’m on chemo–and fighting a war on three fronts starts to wear you down.

I need to come-up with a descriptive term for how I (we?) feel when we are on chemo. I’ll admit it usually isn’t as bad as our fellow solid tumor cancer patients who are forced to endure months of high dose chemotherapy. But it still isn’t any fun, is it? That “fluish” feeling–like you are coming down with something.

All of this leaves me in a tough spot as both a writer and husband. I want to stay positive. I want to convey hope to my readers.

So do I share how I feel on my bad days?

And how about my wife? The ultimate caregiver, Pattie says she wants me to tell her whenever I’m in pain or there is a problem. But if I spoke-up whenever I felt pain or fatigue, there wouldn’t be much time for anything else. I don’t want to worry her.  And I don’t want to seem like I’m crying wolf.

So most of the time I “suffer silently” and say nothing. But I know she notices the grimace when I get up out of my chair. Or my limp when she needs to slow down and wait for me during our evening walks.

Depending on breaking news surrounding the FDA review of Kyprolis (carfilzomib), I would like to continue this thread tomorrow, sharing my secrets for fighting through the down days and staying positive–at least most of the time!

Feel good and keep smiling!  Pat