Let me start out with a quick update about how I’m doing after my salvage transplant earlier this summer.

As I become more active, I’m experiencing more bone pain. It’s hard to know if the pain is caused by old lesions or newly formed ones. I’ll know more later this week after having some tests done.

I’m feeling much stronger; I’m walking, swimming, and doing intense physical therapy. I lost a lot of muscle mass over the summer, but I see improvement already. I’m cautiously optimistic about my future.

Becoming a nonsecretor complicates things, though, making it difficult to get into a majority of clinical trials. Potentially more ominous: It makes it tough for my doctors to mix and match drug combinations without knowing how well they are working be­tween PET scans. PET scans are basically the only way to track and assess disease burden in non­se­cre­tors.

We’ll get it figured out.

When I recently was reading some of my old columns from early 2013, I was startled to notice that things haven’t really changed that much.

Two years ago, I was already agonizing about how I was running out of drug options. I still hadn’t tried the soon-to-be-approved Kyprolis ^[1] (carfilzomib) and Pomalyst ^[2] (pomalidomide). At the time, recently approved Farydak ^[3] (panobinostat), and hopefully soon-to-be-approved elotuzumab ^[4], daratumumab ^[5], and ixazomib ^[6], were just a blip in the multiple myeloma research pipeline.

I found my trip back in time to be encouraging. I had already begun thinking about my life in two-year increments. If it’s more than two years out, I wasn’t interested. It was true then, and it’s true now.

Having a myeloma specialist speak in terms of months, not years, when we discussed my prognosis really got my attention last spring. It was the primary motivating factor behind my decision to try a modified, salvage autologous stem cell transplant, which I described in my April column ^[7].

I’m pleased to say I have that two-year horizon back. I know my body pretty well. I never expected to achieve a complete response with the salvage transplant (not that anyone could really tell without more tests).

Instead, my body is telling me that, yes, I still have several active lesions. I’m just hoping it isn’t the large one at the base of my skull, dangerously close to my brain stem. A brain MRI should help clear up any questions about that. I hope I’m wrong. But I don’t think so.

My insurance company initially denied my getting the MRI and a PET scan less than three months apart. While they eventually relented, it is yet another concern I have; as I touched on earlier, the standard four months between scans could leave my doctors flying blind.

By the end of the week, I’m hoping that I have more answers than questions. But when you’re living with myeloma, do the questions or worry ever end?

I’ve had readers comment about how “tough” I am. Truthfully, I’m not stronger or tougher than any other multiple myeloma survivor. We’re all part of an exclusive club. No one in their right mind would volunteer to join, but we’ve been drafted.

All we can do is make the best of what we’ve got. It’s hard. It can be painful – and it may not end well. But the strength we gain from overcoming obstacles that most can’t even comprehend is a valuable life lesson.

Still, I think the toughest part of my journey is the uncertainty – the waiting and wondering. Yet another ob­stacle to overcome. But for me, not knowing is the hardest part.

I should have a lot more answers about my future to share with you next month. How effective was my trans­plant this summer? Will my doctor recommend doing a follow-up (tandem) stem cell transplant? If he does, will I relent, or listen to my body and try to build on the recovery I’m already making?

It will probably be too soon to know what my next step will be if I don’t agree to undergo a tandem transplant. Do I stick with my out-of-state specialist, or switch back to my new hematologist at my local myeloma center?

One thing’s for sure. As of today, there are more questions than answers. Why can’t I get used to it?

Feel good and keep smiling!