Happy Anniversary, and the Turning of the Corner

Four days ago was the first anniversary of my diagnosis of multiple myeloma, and I celebrated … by having a PET scan. 

It’s weird. We didn’t have a celebration planned. No cake. No nothing, really. Just another day – another day that ends in a ‘y.’ I can’t even remember what we had for dinner that night. And, that was kind of a mistake, because I probably could have used a little pick-me-up.

I wouldn’t say I’ve been unhappy lately. I still enjoy days of smiles and laughs, and I’m blessed with supportive friends and a loving family. It’s just that I haven’t been my super positive self. There’s been this general, bluesy malaise that has crept up over the past couple of weeks, and it’s taken me a bit to shake it.

Passing the year mark should totally be celebrated. Heck, each day should be celebrated, by each and every one of us, for each day is truly a special gift. And, for me, the past year has been quite eventful. 

A year ago, 90 percent of my bone marrow was cancerous. In late August it was less than five percent. I haven’t had a bone marrow biopsy recently, but the thought is that the cancer in my body is currently at a minimal level. So, I should be going out in the rain today and get a freakin’ cake. In fact, I think I just might do that. 

You know what, I am going to do that. Right after I finish typing.

In thinking about the malaise, on the root cause(s), I think it’s nothing and everything at the same time. Physically, I feel great, particularly knowing that I’m just four months removed from a stem cell transplant. My doctors warned me that recovery could take six to 12 months, but I have to tell you, as far as strength and stamina, I’m getting pretty darn close. I’ve gained back pretty much every pound I lost during chemotherapy and the stem cell transplant process, and I feel pretty strong. I still get very tired by the end of the week and I’ve not truly tested myself physically, but I have been consistent with my exercise activity. Just a few weeks ago, I took a five mile hike, half of it uphill, and my body responded well, both during and after.

Physically, I’m making good progress. My malaise is being driven, I think, emotionally and mentally. And, instead of looking on the bright side – the progress, etc. – I had been focusing on the negative – I have cancer and I don’t know what lies ahead in the future.

Hey, guess what? I never knew what lay ahead in the future before cancer either. But, there was something blissful, naively blissful, in my diagnosis-free ignorance.

So, I’ve caught myself thinking about not living more than I’ve caught myself thinking about living, and I’m still, one year later, trying to navigate that turn, that can in mental outlook to living for the moment and not taking life and all it entails – particularly relationships – for granted. 

I get close sometimes, then slip back a little. But, I think that’s to be expected for nearly all of us.

There’s also contributing factors. First off, I’m back to a maintenance dose of medication. I now take a daily dose of Revlimid, albeit a 10mg capsule as opposed to the 25mg capsule I took last year. And, I also am receiving Velcade injections again, albeit once every two weeks instead of every week. But, both were a bit of a psychological blow. You see, before my transplant, there was hope I could go a long time, maybe even over a year, with no maintenance medication. Now, here it was, less than three months after having my transplant, I’m right back to getting poked in the abdomen. It seems the aggressive form of my disease, coupled with my young age and my reaction to my induction treatment points me to this new maintenance regiment. But, my first thought was, ‘why did I even do the transplant?’ [My team has advised me that it was the absolute correct thing to do.]

Second, the one-year mark is a big marker, whether I consciously looked at it or not. It’s a big deal, and a sort of natural moment for reflection. Then there was the PET scan looming over my head. For the uninitiated, a PET scan is a 90-minute procedure where a glucose solution is bound with a radioactive isotope and sent off swimming through a patient’s circulatory system. After giving it thirty minutes or so to travel all around the body, the patient is strapped into an imaging machine and gamma rays start to take ‘slices’ of images of the entire body, first from toe to hips, then from head to hips. What the technicians and doctors look for are ‘hot spots,’ or where the radioactive isotopes congregate. You see, cancer cells just love sugar (like most cells), and they greedily consume the glucose. However, in doing so, they leave the radioactive isotopes, which gives away their location once spotted by the gamma rays. 

It’s the anxiety of the test, and the forthcoming results, that can be a bit maddening.

I’ve learned a lot from my support group meetings, and one of the first things that started registering with me during those meetings was the talk about waiting – waiting for tests, waiting for test results, waiting for diagnoses, etc. My fellow patients would talk about the stress and anxiety of waiting for news – am I getting better or am I getting worse? When I first heard them speak, I could relate a bit, but I didn’t really feel what they felt. 

I know now. It’s the real deal. 

For me, it was a pessimistic, ‘I’m getting worse’ feeling, maybe setting myself up for receiving ‘bad’ news. Nothing led me to that conclusion – no data. Maybe just a self-protective defense mechanism, but self-protecting me from what exactly? That’s not really like me. Ordinarily, I would have thought more along the lines, ‘I can hardly wait for this test and see how freakin’ great I’m doing.’ 

More things for me to ponder on, I guess.

Then, there’s this whole coronavirus (COVID-19) thing going on. I worry a bit about getting it – I’m sort of a natural hypochondriac at heart, I think. And, for cancer patients with a compromised immune system, infection can be fairly serious – estimated mortality rates near 6 percent. But, more than the virus itself, it’s the effect of containing the spread of the virus that is ‘piling on’ on my malaise. With each canceled or postponed event, there has been another blow to my morale.

Of course, it’s those events I might watch on TV as a means for escape – F1 auto racing, for example – that have an impact. But, it’s even more so for the events I was planning to participate in – the Ragin’ Cajun fundraiser for the Sandra J. Wing Foundation that I was suppose to speak at, the annual MMRF 5K Walk/Run in San Francisco that brought so much hope and inspiration to me and others last year, a Warriors game I was going to with my buddy Rob, the Coachcella festival I was attending with Paul, Joe and Brent. And, that’s just through mid-April!

All that stuff sort of weighed me down.

But, I’m beginning to turn the corner.

First off, I gigged with my bandmate Scott at the Chronic Padres’ first gig of the year last weekend, playing in the barn at BoaVentura winery before a small, but enthusiastic crowd. Music has always been a wonderful diversion.

Then, I had a doctor’s appointment on Thursday, the day after my PET scan and my anniversary. The first Dr. Raj said when she came into the examination room was ‘congratulations!’ When I asked ‘For what?’ she gave me a sort of incredulous look, like ‘what, you don’t know?’ Then she told me my PET scan results came back clean and perfectly normal. On top of that, my blood test from three weeks prior showed only the faintest of possible protein markers in my blood, levels so low that it doesn’t register as abnormal.

And, even amidst all this coronavirus hoopla, we went out with friends on Friday night and played another Chronic Padres show on Saturday.

I can feel myself turning the corner and I just need to keep pushing myself along. After all, that all any of us, really, can do. Another day, another step to making the reality of our lives.

After all, what do I have to feel sorry about? I might not have it all, but my cup is certainly overfilled!

Postscript: I got my cake!