Update - Not Great

I had a bone marrow biopsy last week, and the results came back this past Monday. I'd say, not horrible, but not great. We were hoping for remission at this point, but I'm not there yet. It's likely that I'll have two more cycles of chemotherapy before I can move toward the preparations for the stem cell transplant.

I'm not upset, or disappointed, or anything like that. I was informed, from day one, that there are no sure things other than reaching remission. So from these numbers, it just means I'll be at this a little longer than planned. The medicines are working. I feel better every day, and my strength has come back so much. I'm not in denial, I'm not afraid of this cancer, and I'll get well soon. I'm hearing great success stories from so many people, and those make me even more confident that we can beat this disease. I've always been willing to do as I'm asked, and whatever efforts I have to make to kick this monster to the curb, well I'll just make them. I have a lot of people counting on me to get this right, and I have no intentions of letting anyone down.

Onward and upward, right?

A Damned Challenge

"While available drugs can push the disease into temporary remission, fatal, uncontrolled cell division always re-emerges over time. Until now, the cellular mechanism driving this relapse has remained unclear."

That's a pretty tough nut to swallow. 

I've been informed that people live one year, others live 10 years. The late Geraldine Ferraro battled longer than 10 years with MM. She was older at the time of her diagnosis than I was when I received mine, but she didn't take any nonsense from Myeloma and slugged it out to the end.

I'm beginning to understand that Multiple Myeloma is always a fatal disease. The first remission is considered fairly routine and predictable. It's the relapses that really screw things up. The whole situation changes once there is relapse and things always look a little bit darker.

Because multiple myeloma is ultimately fatal, people with multiple myeloma are likely to benefit from discussions of end-of-life care that involve their doctors and appropriate family and friends

A sentence like that is hard to read without feeling some sort of negative reaction, right? But when I look at what's been done in just the last five years in the battle against MM, I'm determined to do anything I can to stick around, survive as long as possible and see what the medical magicians pull out of the hat over the next five.

Big Steps. BIG!

Good news today. I met with the Oncologist today, and he reviewed my blood work. The numbers are good, and right where he'd hoped they'd be. This cancer (Multiple Myeloma) is a real technical-sounding disease, with a lot of names and numbers I'm having a hell of a time understanding. But in a nutshell, the bad protein in my blood has gone from 5% to 1.5% which means I'm responding to treatment just as hoped.

The Doc told me that the next step is an evaluation and bone marrow biopsy. We'll do that this coming Monday. Right now, my condition is "very good partial remission" and he said we can't declare a remission without the biopsy. If all is good with that, then I'll have a consult with the transplant team at Hackensack University Hospital in New Jersey.

What has to happen is that they'll decide if I need another cycle of treatment with Revlimid, Velcade and Zometa. When that decision is made, the next step after that would be to prep for the stem cell transplant.

The way I understand it, the process is this: They'll harvest my own stem cells through IV. They'll freeze and store them. Then the Oncologist said they'll use something called melphalan, which will wipe out the remaining myeloma cells. This also destroys the bone marrow, so they'll wait till I'm clear, and then transplant my own stem cells back into me.

The next step is to avoid infection (boy in the plastic bubble time) and wait for the engraftment process to happen, to regenerate my bone marrow and thus, my immune system.

I'm very excited. The next few weeks will be busy. Consults, meetings, a class. And then we look forward to early 2013 for the actual transplant. I can't wait!

Looking A Little Ahead

One thing I've always liked about an online blog is that it is a permanent record of thoughts. I can look back at any time I've written and have an idea of how I was feeling or what I was thinking at the time.

Today, at 9 AM, I'm going in for an evaluation of how the chemotherapy is working on me. If things are great, then the next step will be to prepare for the stem cell transplant. If things aren't there yet, we'll resume the medicines. Either result is good, but in my mind I'm looking at the transplant scenario. I've been very optimistic to this point with everything that has happened, so I won't be disappointed if we're not quite there yet. It will just be a matter of time.

It will just be nice to know how I was feeling right now.

A Little Bit Of Hope?

Today I'm going for a full series of blood tests to see how my little battle with Multiple Myeloma is progressing. We've been targeting December as the remission date, but there's a slight indication that things might be coming along a little faster than expected.

I've followed my doctor's instructions to the letter. I've behaved. I've gained some weight, and that's the first time that I've ever been happy to hear that. Eating my way back sure has been fun.

I've never been more positive and optimistic. Multiple Myeloma can be a very nasty little disease. We don't hear about it as much as other blood cancers, but it's pretty wicked in its own right. It destroys bone and causes kidney failure. It typically attacks older people, with few, if any, people are diagnosed before age 40. There is no cure for Multiple Myeloma. It can be put into remission, however, and then patients are monitored regularly to head off any relapses, which are likely.

I've broken my own rule, and gone ahead and read some articles about the life expectancy of MM patients. I was pretty upset by what I'd read, but what I realize is, those limits are there to make us Myeloma patients fight just a little bit harder. And I won't be reading those articles or any like them any more. I plan to stick around a long, long time. And I'll do whatever it takes to get the job done.

I can't take any credit for this. People have been so very supportive. And my Oncologist is the best. His competency is reinforced every time his prognoses are confirmed. I'm doing a lot better now than I was in June. Just a few months ago, I was resigning myself to feeling lousy. Accepting misery as just part of getting older. And now I feel better.

We're gonna fight hard here, and when the fight is hard, we'll fight some more. That's what I have to do.

Thanks everyone.

Put Me In, Coach

So, I'm done with my pity party. Thanks for indulging me if you did so.

I broke the rules by reading that stuff about life expectancy. The worst thing one can do in a fight is think about the ways you can lose. Any good coach will tell you to assess the opponent, but never let the opponent take up any more space in the brain than you decide.

Of course, I'm still going to watch cartoons. And eat bad foods for a while more, at least until I see some fat around the middle of me!

Hell No, I'm Not Dying Right Now, Thanks.

(Note: When I include links in my posts, they always open in new windows)

I read this article tonight: Life Span of Multiple Myeloma Patients

Then I read this one: SEER Stat Fact Sheets: Myeloma

And of course, this one, which is responsible for my Blog's Title: Multiple Myeloma


I'm not going to lie. This is the very first time I got shook up. It was a quiet night around here, and I was browsing my laptop looking at all the photo's of my kids and family that I have. Suddenly, I felt very mortal. But just for a little while.

I've never fit into too many molds. I have managed to pull off a lot of things that people said I wouldn't or couldn't do. I wasn't always a flop, either. I know that right now I'm working a very menial job and that I'm far removed from the life I led just 5 years ago. I was a community college grad (which seems to make one a bit of a joke, it seems) but I managed to achieve the position of Director at Merrill Lynch (when it was a respectable, upstanding company), and I'd started out as a coffee boy/flunky. And I was the first one in my family to get a Bachelor's Degree. Ever.

My personal life hasn't followed any prescription, either. Looking at my life, you can see proof that men and women can be friends. Some of the best friends I've ever had, and still have, are women. I have friends as young as 19 and as old as 75. And I manage to keep those friendships healthy. So yeah, I'm a screwball by conventional standards.

But that keeps me from accepting limits. This is not the same as living in denial, mind you.

And god damn it, I'm not going to accept any life expectancy limitations. These articles shook me up, for sure, because they opened my eyes up a little bit more, and I realize how formidable this opponent is. Not that I was taking it lightly from the get-go, but I most definitely need to man up a little more and train just a little bit harder for the next few rounds.

I didn't cry. Almost, but I didn't. I don't want Myeloma to ever see me cry. So, please pardon the language, but as they say on Twitter, #fuckcancer.

Profound

The word "profound" does not apply to me. Oh, I often try to come with up some pearls of wisdom, thoughts that might help promote me as a sage. But, man, I am so plain, ordinary and simple.

Not that that's a bad thing. At least not for my own purposes. I don't worry about making impressions on people in my every day life. They see what they want to see, most of the time. I learned a long time ago that I'd never be suave, smooth, cool and collected. I'm not quite Peter Pan, but I have remained pretty much the same as when I was a kid.

I like being the class clown, I love attention from humor. I always wanted to be a stand-up comic, but I definitely don't measure up to that because my jokes and silliness are too spontaneous. I can't write a script for being a comedian. And besides, my style of humor is along the lines of that of Lewis Black, and he does it a lot better than I do.

Funny as I try to be, it rarely translates to the page. So I've tried to invent some alter-ego, some other side of me that could philosophize, and try to make sense and light of the events off my life. I've walked away from situations that should have killed me. I've survived things that make me a mini medical miracle at times.

Why? It always makes me think that I'm intended to do something great. But yet I work an ordinary job, have little in the way of special talents. I sing ok, I cook fairly well, but that doesn't amount to much. At least not for historical purposes.

I don't know what's up. But I'm going to keep working on it until I figure it out.

A Little Excitement In My World Today!

I had another chemo treatment on Monday. The nurse administered the drugs, and when she was done, she said, "OK so next Monday you come in for the full blood work procedure. Then Dr K can see if you need another cycle or if you're ready to start preparing for the stem-cell transplant."

I left with a big smile on my face. C'mon next Monday!

Wish me luck.