Marshawn Lynch is a running back on the Seattle Seahawks. When he runs, they often refer to him being in Beast Mode. Yesterday as I was walking from my car to Berenson's office I decided I was putting myself into Machine Mode. I finally feel normal after a month and half of surgeries, pain, chemo, fatigue and mental exhaustion. But that's all behind me. I feel good. I went to the gym yesterday. First workout with the new port. And I guaran-fricking-tee that I'm not doing any exercise that might mess up this port. I've learned my lesson. By machine mode, I mean that I'm focused. I'm focused on my fitness, on my nutrition, on my mental state, and I'm focused on being focused. I'm going to be like a fricking machine. I just operate and that's all.
My labs this week were awesome. We saw a giant dip in my protein, paraprotein and kappa light chains....all my myeloma markers. I had some drama with the lab (5th time in 9 months), where they didn't run the upep. The upep is vital. It's taken from a small urine sample. In the past they've actually lost my sample and they've also lost blood. Who does that? Suffice it to say, I'm changing labs asap. But this time, they didn't lose it, but they didn't test it. So after a few phone calls and some yelling and some stress, they tested my sample and all is good. Of course, since the lab had issues, a small part of my brain thinks they fucked everything up and the numbers aren't valid. That's doubtful, but it was a thought in my noggin. Given my numbers, I figured for sure I'd be back on maintenance. Berenson was very happy the results. But he thinks since we had such a big drop, that we ought to stay aggressive and beat the myeloma down one more cycle. Then maintenance. Dr B said if I really hated my treatment I could do maintenance. Sure I hate my treatment, but it's the dex I hate and that comes with maintenance as well. So what the heck, we'll do another cycle of the hard stuff (treanda aka bendamustine). Dr B also said that other patients are now on my regimen. He called it the Goldman regimen. Hey, I'm somebody!!!!!! The point is we are staying aggressive. We're putting myeloma on its heels. My foot is on the pedal. Full steam ahead.
I also talked to Berenson about my recent surgery and how we can keep my immune system up and not have me susceptible to viruses and such. Leslie and I think that my constant taking of antibiotics can't be good for me. That alone might impact my body's ability to fight stuff off. But Berenson (as doctors tend to do) dismissed this. He said there are no studies that show long term use of antibiotics is bad. He also said that it's the drawback of treating myeloma....i.e. I'm gonna get shit. We treat the myeloma first and then deal with the other things. I think all patients get familiar with this. Another reason why I need to be in machine mode. Machine mode with a Teflon coating.
Quickly I want to acknowledge two people. First is Leslie. She's done an amazing job as my caregiver and is vital to me being where I am with this myeloma. She's now acting as caregiver to her dad, who has a host of issues. It's a tough situation. I feel bad that she doesn't even get a chance to think about herself...to focus on her being her. I think being sick has a guilt inducing effect on patients. Nobody, me included, wants to be a burden on anybody. We want to be strong and not impact other's lives.
Second, a quick shout out Brad. He's the strongest and most focused person I know. He feels great but also has a challenging myeloma situation right now. I have no doubt he is going to kick this cancer's ass, but let's all send positive thoughts to him.
The National Coalition for Cancer Survivorship is a patient-centric organization that advocates for quality care for anyone touched by cance...