62 Months: Titanic

There's so many times I just think to myself, "keep fighting, keep going and it all pays off in the end." But I always remember a sales meeting where the leader said,  "Yeah it pays to work hard, but always remember there was probably a guy manning the pumps right up until the moment Titanic sank."

I've found that there are so many people fighting Multiple Myeloma out there. I've been inspired by some, educated by some and encouraged by all of them. I hear stories every day of people who are living a long time with the disease. And it makes me brave.

But one thing I like about the Oncologist who is treating me is that he makes sure I understand all the aspects of Myeloma. He's told me that this particular disease frustrates medicine as a whole, and Oncologists in particular. He said the disease affects every patient differently. He also makes sure that I'm going forward with this little fight with my eyes completely opened.

Well, my understanding of the illness is still pretty limited. That's not the fault of any of the doctors I've been involved with. They try. What I've managed to grasp, however, is basic enough. My case has been described as "high risk" multiple myeloma. I just take that to mean, okay, I'm not going to live to be 100 years old. But it also doesn't mean I'm dying next week.

I have to get another stem cell transplant procedure. It's called an allogeneic transplant ( if you'd like to read about it, here's the place.) It's another weapon I can use. It's another, better chance to get better. I'm going to forget about the pump guy on the Titanic for now.

I don't care much for boats anyway.

62 Months: Getting ready to fight some more...

There isn't a lot to report today because the plan was mostly testing. Onc Doc performed a bone marrow biopsy, and again I want to mention that a bone marrow biopsy is not the horror that a lot of people, TV shows, etc might lead you to believe. For me, that Novocaine shot the dentist pops you with to numb your mouth is a lot worse.

The discussion was about potential options. I agreed to some pretty aggressive treatment back in July 2012, when I was first diagnosed. It might be paying dividends. One of the problems that complicated my situation was a chromosome abnormality, called Chromosome 17 deletion. Basically, that makes the cancer harder to treat and get under control, but also makes me high-risk. And that means the period between remission and relapse could be shorter. However, there is a chance that the aggressive course of treatment that was administered may have helped my cause.

One of the downsides of the chemo is something called Chemotherapy-Induced Peripheral Neuropathy. (CIPN). Always gotta love something with an acronym. If you've experienced neuropathy, you know that it sucks. If you haven't, the best description I can give is it feels like a whole lot of bees stinging you all at once, while you're standing in a hot BBQ. Mine has affected my legs from the knees down, and in my feet. It alternates between hurting and being numb. When it's numb, you feel like you're walking on sponge. Makes it tough to walk right. And I've never been the most graceful guy to begin with.

My Onc Doc is managing the neuropathy fairly well. He's prescribed something called Gabapentin. Gotta love a medicine that sounds like you're dribbling when you say it. It's actually an anti-seizure medicine that's also been found to treat nerve pain. I'm so reluctant to utilize narcotics. I use them only when the pain makes me nuttier than normal. And for some reason, the neuropathy is bearable most of the day, but then at night it's like someone turns the flamethrower up. So I do what I have to, day to day.

The only reason I even mention neuropathy is the discussion about the potential options. If the biopsy results are as expected, we move to the next phase. Option A is most probable, doing the allogeneic stem cell transplant. (that's the transplant which uses donor stem cells) Option B is a lifelong course of chemotherapy drugs, probably low doses of Revlimid and Velcade.

The downsides of the transplant is the risk of rejection, now known as graft vs host disease and of course the risk of infection. The Onc Doc said that this transplant is very toxic to the body at first.

The downside of the chemo regimen is that it's a guarantee that the neuropathy will not go away. Period. They'll have to do their best to manage it. And of course, there's always the risk that the chemo just flat out doesn't work.

Now this isn't going to be a situation where I'm going to have to make some dramatic life-or-death decision. I trust my doctors with my life. Literally. The team at Hackensack is going to meet (they sit down with like 15-20 doctors on a panel) and between them and my Oncologist down here in Howell, they're going to decide what course of treatment is going to serve me best and keep me around longer so that I can keep writing long notes and stupid statuses here.

I was only disappointed because he said he can't sign off on me going back to work for the time being. I'm still a little low in the blood counts, and still fighting infections. I'm good that way. I like my job and I'm about up to here with trying to entertain myself in the house. I'm not allowed out into the general public just yet, so you're all safe.

I've got my to do list. I have everything I'm going to need to get healthy, what to eat, drink etc. It's gotten me this far. I've got to avoid a few foods because I'm a wimpy allergic-to-everything patient. The Nutritionist Doc went over what I can shove into my belly, and what I can't. I'm well armed for the next battle.

I'll see the Transplant team in Hackensack University Hospital on May 16th. Stay tuned.

April Already

I'm feeling a lot more like myself lately, but it still comes and goes. I'm having good days, great days, not so great and just flat-out bad days. I'm lucky in one respect: while I don't speak to the doctor often, when I do, he listens, empathizes and provides remedies or relief.

My only problems are mostly to be expected. I have a low hemoglobin count, as well as a low red blood cell count. My white count is still low as well, but these numbers haven't had the time to make a comeback. I'm the type of guy, if you tell me that my problems are part of the process and I just have to deal with them, that's what I do. I take my medicines and suck it up. The good thing about my doctor is, he relieves what it's possible to relieve, but tells me what can't be relieved. Make sense?

Got a new hat from my friend Cassie. I have another one around here somewhere, so when I find it I'll share a pic of that one too. Not easy finding "Multiple Myeloma Awareness" gear actually. Breast cancer stuff has become a cottage industry, but MM still needs some work. Maybe when I'm better.

Appetite is coming back. Slowly but surely. That means there's potential for a food shortage on the East Coast.