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An amazing emotional roller coaster ride

Home/About Pat, Diagnostics, News, Side effects, Transplants/An amazing emotional roller coaster ride

An amazing emotional roller coaster ride

I promised to follow up on yesterday’s amazing news. Dr. Tricot reassures me that my tests confirm there isn’t any active myeloma left.

Yet I didn’t go into our meeting expecting such good news. Late Wednesday night I was able to take a sneak peek at my PET scan results Tuesday. I’m usually pretty good and interpreting them. In this case I should have waited to review them with Dr. Tricot.

While the radiologist’s report clearly outlined some good things, My heart fell a dozen stories as I noted that sadly there was still some uptake of radioactive glucose in a few existing lesions—and maybe a small, new lesion or two.

I carefully reread the radiologist’s report. Yes, any myeloma was gone from those worrisome and sometimes painful lesions that had been hanging around forever in my ribs and pelvis. A brain MRI from the day before showed that the occipital lesion at the base of my neck is already shrinking. No myeloma there. Whew! No radiation to the back of my head. Bet that’s fun!

Yet the bottom line: to me, “uptake” meant cancer.

Should I call Pattie? It was already after midnight in Florida. No, I’d wait until after I spoke with Dr. Tricot early Thursday afternoon.

Yet my mind was racing. Was repeating another God-awful stem cell transplant a mistake?

It only took me about ten minutes to pull things together; an advantage of living with a touch of attention deficit disorder over the years. That and experience. I wonder how many times I’ve gone over test results with my doctors and nurses since 2007?

As a coping mechanism, at times like this I like to fall back on the science; something concrete. I look for positives without being Pollyannaish and ignoring bad news.

So while I sat in the overstuffed waiting room late yesterday morning (I could barely find a seat—in an unfortunate twist, business must be very good), I decided to craft a brief review of what I’ve been through since deciding to work with Dr. Tricot on a last ditch effort to buy myself more time.

For those of you that haven’t been following along, let’s review how I got here in the first place. I like to do that. I’ll swallow my emotions and work through the practical stuff before mourning bad results or celebrating good ones.

It’s clear that my first modified, salvage autologous stem cell transplant this summer was a slam dunk success. My tumor burden was significantly reduced throughout my body. So much so that after three months, all that showed up in my last PET scan was slight activity in two lesions. The bone marrow was clear; my M-spike, although not very relevant anymore, was practically gone.

Best of all, the occipital lesion threatening my brain stem had stopped getting larger.

Dr. Tricot argued to try a second procedure in October to complete the tandem. If the first one worked, he argued that the second one should get it all.

I wasn’t excited about the prospect. But ultimately, what choice did I have? Myeloma drugs weren’t working very long for me anymore. If high dose melphalan—with the help of three other toxic friends—worked the first time, I might as well stick with it.

I cursed my decision a dozen times. It wasn’t easy. A stomach infection was really painful for over a week of my recovery. It made what would have been the worst week–when your counts crash and you spend half your day slumped over on the toilet—even worse. “Get me a gun.” I was heard to mutter more than once.

Now a serious case of C. diff had put me in the ICU for two days. A day later and I was back to see my friends upstairs in the BMT unit for three more.

I reasoned that it would all be worth it, right? Now that I felt good enough to undergo tests, hopefully all traces of my myeloma would be gone. Dr. Tricot couldn’t guarantee for how long, but who knows? I could be a lucky one that stays in late stage CR for years.

Why not me?

Yet this latest PET report looked a lot like the last one. There was still an “increase in uptake” in several lesions.

I was surprised. While my lower back had been sore the last few days (damage from back-in-the-day acting up because I’d been so inactive), my pain level had been remarkably manageable. Best I can tell none of my lesions felt painful or active. I had been encouraged by that.

And on a positive note, my M-spike was no longer measurable. Just a faint band was left, according to this week’s SPEP test.

DR TRICOT 2How often have we discussed how denial is a powerful thing? Let’s see what Dr. Tricot had to say.

Now we’re all caught up. As I gleefully shared in my short post yesterday, Dr. Tricot entered the exam room proclaiming, “the myeloma is gone.”

This didn’t jive with what I’d read, so I asked him about it. Dr. Tricot noted that any uptake in older lesions was nothing more than an equalization effect. Apparently my bone marrow had been flourishing, rapidly growing more dense and active; a very good thing. The “uptake” of glucose equaled the marrow density surrounding each lesion. Nothing more.

“There’s no myeloma there.” Dr. Tricot said. “This is very good news,” he added reassuring me.

I hadn’t necessarily misread the PET scan report. Dr. Tricot disagreed with the radiologist’ interpretation; yet another advantage to using an experienced specialist.

I asked about the faint, immeasurable band that still showed up on the SPEP report. “That will be gone in a few weeks,” Dr. Tricot said, assertively.

This is a good time to break. Our meeting was far from over. Am I in CR? Is a stringent CR (sCR) a possibility? Does it matter? Dr. Tricot outlined his plan for consolidation therapy, prospects for ongoing maintenance and dealing with my persistent C. diff infection. I’ll get into all of that in a few days.

For now, I”m ecstatic that things are going so well. Best of all, I’m home! There’s a bounce in my step and a smile on my face. Somehow it all makes racing off to the bathroom seem like it’s not a big deal anymore.

It’s going to be an extra special holiday this year.

Feel good and keep smiling! Pat