A Cold? Ha!
One of my favorite shows growing up was the Brady Bunch. For me, just about any life experience or lesson can be understood from the Brady Bunch. One of my favorite episodes was when Peter read a medical encyclopedia and decides that his sore hand means he is going to die. He started to say goodbye to the family. Spoiler alert. Peter was fine. It turns out his hand hurt because he’d been playing a lot of baseball.
My own Peter Brady moment
Last week I had a bit a Peter Brady moment. Spoiler Alert number 2, I’m fine. I’ve been on my current treatment for about 2 and a half years. In my 8 years with myeloma, this is the longest I’ve been on any specific drug. With myeloma, it is generally understood that at some point our disease morphs and becomes resistant to whatever had been working. My local hematologist, who diagnosed me, has always preached two things: 1. don’t get excited by an individual lab result, watch the trends, and 2. our goal is to be on cruise control. Since starting Darazalex, immunotherapy, and my current drug, I’ve basically been on cruise control. I do my monthly infusion of Darzalex and take an oral pill (pomalyst) for 21 days of a 28-day cycle. When I see my local doc before doing my monthly infusion, I usually have already seen my lab results and we both know I’m on cruise control. Typically when we meet, we talk about bikes, musical instruments, ceramics, and technology.
Last week though, he really threw me for a loop. He entered the exam room looking very serious. He asked if I’d seen my labs yet. In this case, I hadn’t. He tells me that things are changing and that it may soon be time to switch drugs. This is very unlike him. He seemed genuinely concerned. His worry absolutely made me worried. But he was also breaking his number one lesson; follow trends and don’t get excited by one lab result. I started to think about what the next drug would be. Was I ready, mentally, for a switch? The answer was, not really. Had my good fortune run out? I left his office thinking I better pick up my pace on living and checking things off my list.
Receiving conflicting treatment information
But here is where it gets tricky. I also have a myeloma specialist, who I see every couple of months. He came up with a creative drug regimen in year one when I was proving to be resistant to most of the then traditional myeloma drugs. It’s not hyperbole to say he saved my life. Last week I saw him three days after I saw my local doctor. Those were three very long days. I wanted to tell people that I may be relapsing but decided I’d hold off until I was certain I was changing drugs. But guess what my specialist told me? He said everything looks fine, that there is nothing to worry about and I’m still responding well to the current drugs.
I trust and respect both doctors. So, what do I with this conflicting information? Well, I guess I do my treatment later this week, do new labs in 3 weeks, and see how things look. With the potential bad news from doctor 1, I started to think that my daily naps and declining fitness level meant that I was relapsing. Of course, I’ve been tired and lethargic. It all made sense. These were my symptoms at diagnosis and at my previous relapses. But then after seeing doctor 2, it might turn out to be that I’m just getting older and simply must work harder at staying in decent shape.
When I was first diagnosed, google was a dangerous thing. Google was my version of Peter Brady’s medical encyclopedia. Over the years I’ve learned what are reliable sources, and what aren’t. Nonetheless for the next few weeks, I’m going to be treading lightly and appreciating things a bit more. Just in case.
What type of blood cancer are you or your loved one diagnosed with?