Catching Up

I just walked out of the oncologist office. I went in with some concerns, but this doctor is awesome.

I lost about 15 pounds. I explained what else has been going on and doc said, "no worries".

I have two very painful spots in my chest. They hurt to the touch, but there are no lumps. He said that the one medication I'm taking could cause inflammation. Check!

I have an open wound on my foot. Been there nearly a year. Doc asked about who is treating it and what they're doing. I told him the podiatrist has been treating it with various remedies. He said I should see an orthopedic doctor now. He told me that they could use a hyperbaric treatment. Check!

My blood work is clean. Check!

Life is good. Right now at least. Yay.

Return of the Evil

Well, it's been a fun, clean ride. But, it appears, the Cancer has poked its head out from behind the curtain to say hello.

A few weeks ago, I had a PET scan. The oncologist spotted a "shadow" on my left femur, aka the thigh bone. He ordered a follow-up MRI which revealed a new bone lesion. What's incredible to me is, the lesion is 1/16th of an inch. I don't know if you've ever seen an MRI, but to me it looks like spilled paint on the garage floor. How anyone could look at that mess and spot something 1/16th of an inch is just amazing.

Anyway, the oncologist sent me to see a radiation oncologist, Dr. Miller. Dr. Miller laid out a plan, which was 5 weeks of radiation, 5 days per week. For some reason, the oncologist balked at this plan, and asked Miller to hold off until I see the old transplant team at Hackensack hospital.  I guess he wants another set of eyes on my case. I'll see them this coming Thursday.

If all goes as planned, I should start the radiation as soon as possible, so that I'm completely done before summer kicks in. Then I'll consider renting myself out as a night light or flashlight. Keep me in mind.

Ok so that's it for now. We'll see what Thursday brings. I'll post another update if anyone is interested. Wish me luck.

62 Months: Dogs

A BLT sandwich. That's what I ate tonight for dinner. And that's what brought it home for me. And my dogs. I gave them each a bite.

I don't pretend to be all heroic and smiley and brave 24 hours a day, 7 days a week.  But I complain a lot less that I used to. Traffic doesn't seem so awful. And a BLT sandwich sure tastes great. Especially when someone else makes it for you.

My priorities have changed significantly. For me, it's all about living in the now. No time for grudges. Enjoy what and who you have at the time you have them.

My ordeal has been accompanied by some serious eye-openers. I can say that no less than 300 people have stepped into my life to lend a hand, a shoulder, an ear. 300 people. Some from grammar school days, some from the old neighborhood, some from high school.

On the other hand, some 4 or 5 people really shocked me. For all intents and purposes, they've vanished. I never would have seen it coming. But when you have so many people behind you and beside you, you let it go. You enjoy yourself, and like I said, live in the moment.

Kind of like a good dog does. A dog doesn't care that you hollered 5 minutes ago, you're petting him now and that's all that matters. And a dog doesn't care too much about what's going on around him when there's a dish full of food in front of him.

Sometimes I miss the 4 or 5 people, and sometimes I let it get to me. But not for long. And besides, you can't be too grouchy with a BLT in your belly.

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.

62 Months: So what the hell is Multiple Myeloma?

Multiple Myeloma. It's cancer.

Basically it's blood cancer. It's funny that so few people I know ever even heard of it, as it is the second most common blood cancer behind non-Hodgkin's lymphoma.

Multiple myeloma is a cancer of your plasma cells, a type of white blood cell present in your bone marrow. Plasma cells normally make proteins called antibodies to help you fight infections.

In multiple myeloma, a group of plasma cells (myeloma cells) becomes cancerous and multiplies, raising the number of plasma cells to a higher than normal level. Since these cells normally make proteins (antibodies), the level of abnormal proteins in your blood also may go up. Health problems caused by multiple myeloma can affect your bones, immune system, kidneys and red blood cell count.

It's not the easiest disease to explain, as I've found out. Usually people take my answer, "It's blood cancer," at face value. But if they press, I start stumbling around with more info. Not good.

One of my closest friends heard my diagnosis and went home and started emailing me info on MELANOMA. But we let that one slide. Another lady told me she had multiple sclerosis too, so if I had any questions, I could ask her.

It's not the most well-known disease, at least in my circles.

I'd like to work on changing that.

62 Months: Movies

I've got a lot of time on my hands now, at least for a while. There's not a lot that I'm permitted to do, so I sit around for a few hours each day looking for movies to watch on TV. I've got the DVR, so when I find pictures I'd like to see, I record them. I've been building a collection of some of my all-time favorites, and when the occasional "blues" hit me, I load up one of my go-to flicks to relax with.

Here are some of the films I consider my favorites:

Apollo 13 never fails to lift the spirits. It's worth the time just to see the ending alone!

Great Story. GREAT story. This one makes you believe in miracles.

I love this movie. Kinda old-fashioned romance story. Makes you feel like there is love out there somewhere, right? And lord knows I'm such an Alyssa Milano groupie.

OK, maybe not what you'd consider a cheer-up movie, but man it's still fun to watch.

If you've not had the chance to watch this Beatles documentary, it's such a great tribute to George Harrison. Good for the spirits, for sure.

This one puts a smile on my face every time. Not usually my style, but there is some serious talent on display in this flick.

Good for some real belly laughs. This movie has some funny people in it. Alyssa Milano and Nicky Whelan are part of the cast. That's worth the price of admission.

Well that's not all of them, but I don't want to push my luck here. I'd love to hear some of your favorites. Maybe I could add a few of them to my list.

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.

Shining Star

Today I'm going to Centra State Hospital in Freehold, NJ. I'm going to consult with a Radiological Oncologist. The cancer has been kicking the hell out of my legs and my doctor thinks that radiation can help alleviate some of the problems and let me stop walking like the Mummy.

It should be all good. We'll get the Christmas tree set up and use me as the tree-topper. I figure I'll glow brightly for a while and I'll look good up there.

I'm determined to make it a good holiday. Medical expenses will keep me from having a banner year for my kids as far as gifts, but we'll have a great Christmas anyway, just by being together.

And eating. I love to eat.

I really hope the radiation will help. Let's keep our fingers crossed, ok?

Another Starting Line

I'm probably the only one in town who was glad to get a cancer diagnosis. For the last 5 months or so, things really started to go wrong with my body. Things were hurting where they once were fine. I was losing weight like crazy, which was really odd, because I'd begun eating as though it were my job. But mostly I was sleeping way too much. And I like to sleep, believe me.

So many times, things go undiagnosed for people. Things go wrong, and no one can tell them why. I've always felt like that was the worst thing. Something hurts, and no one can fix it.

But I got a solid diagnosis. And for me, that's a good thing. I feel like I was getting my ass kicked in an alley, but now someone has taken my blindfold off and I can see who I'm fighting. The odds just got a whole lot better.

On August 9th, 2012, I'm going to get my first round of two drugs, Zometa and Velcade. Friday I should be getting a delivery of another medicine called Revlimid. That one's heavily regulated and controlled. I can only get that one shipped directly from the manufacturer. I've been doing a little reading from the literature the doc gave me on these drugs, and I might be a little sick for now. But what the hell, anything worth having is worth fighting for, right?

Onward and upward. Or some other cliché!