62 Months: Damned Moment of Truth

A friend of mine lost his battle with cancer over this past weekend. He was my age...just a couple of months apart. He also worked in the Downtown Wall Street area with me. 

Sad as I was to get the news, it had an additional effect on me. It was sort of a turning point. 

I woke up this morning in a different frame of mind. I really believe I've kicked this cancer to the curb. Anything that's happening to me from here on in is all part of the recovery process. My kidneys are not functioning properly: it's a result of the tacrolimus medication and the doctors are carefully adjusting my medication to get the creatinine levels back to normal. My potassium levels had been very high; they've given me medicine and a specialized diet to stop that nonsense.

I've requested physical therapy. Today, a visiting nurse will be coming to my house to evaluate me and approve me for therapy. It will be small steps at first, of course, but I've got to knock this peripheral neuropathy out of my legs or at least get strong enough to bear with it. 

The doctors who performed the transplant estimated my recovery time out to October, 2014. I'm not accepting that. I'm aiming at March, or sooner if possible. I'm gonna fight as hard as I can to get back to life as it was before cancer. And I'm going to fight in honor of my friends Jim, Barbara and all the other friends I've either lost or who are fighting cancer right along with me.

I'm a little angry. The EPA said it was ok for us to come back to work, one week after the September 11, 2001 attacks, and we resumed working down there. There are at least 10 of us who've either died or who are fighting cancer now. 

Well fuck cancer. I'm letting go of the anger. I'm letting go of the past. I'm letting go of everything bad and gearing up for the rest of the fight. 

I appreciate all the support, kindness and generosity I've received over the year and a half this battle has been going on. And I appreciate anyone who takes the time to read my thoughts and words here. ( I don't actually know if many people do).

I'll be writing a lot more often. There's going to be a lot happening.

62 Months: Beatdowns

It has been an interesting couple of weeks. A short while back I wound up in the hospital with an infection treated, I had a 103° fever. I had fever, Chills and shivers like I have never had in my life. Shivering got so bad at one point that they applied oxygen to me. Eventually they administered morphine to calm my body down. I spent about five days in the hospital until the fever was under control and the infection was being treated well. I was sent home with an IV set to finish the IV antibiotics on my own. It appears that the infection is gone.

I began to have double vision. The doctors ordered an MRI on this past Friday and today I got the results. The MRI was clear so we can assume that the double vision is being caused by all the medications I am taking. It is just something I will have to deal with for the time being.

I've had trouble with elevated potassium and creatinine levels. The creatinine levels indicate that there is a problem with my kidneys and they are working on it. I'm being infused with 1 L of Saline and dextrose every day. It takes about four hours each day so we try to get that done as soon as possible.

My appetite is pretty good however I must watch what I eat so that I don't increase potassium levels in my blood. And I have to drink as much liquids as possible. So basically for the time being it's bread and water!

The potassium levels if they get too high, can cause heart attack. I guess were going to have to keep an eye on that. I don't want to have my cancer cured only to die of something stupid like kidney failure. So I am going to behave myself the best that I can. I am under house arrest for the time being. Right now I pretty much only go out to go to the doctor offices. The doctors will tell me when it is safe for me to venture back out into the real world. Not soon enough.

62 Months: Miracles?

Im at a point in my life where I need a couple of miracles. I won't spend a lot of time rehashing the troubles. I'm just in the unique position where cancer is the very least of my problems. 

Imagine that.

Things are going ok with my recovery. I've had a few minor setbacks, and all they've done is allow me to see how incredibly astute my medical team is. They take care of me. It's going to be a few months more for things to be ok, but the medical stuff is the easy part.

The rest of the world is what I'm up against. So, yeah, I really need a couple of miracles. If you pray, send good vibes, cross your fingers, or whatever, see what you can do please?

I'm one of those people who can say, "I never saw this coming."

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 : Real Pain

While the world has put to rest many stereotypes and traditional gender roles, there are just some habits and ideas that become engrained in our make ups.

This is where cancer really hurts. I've been relatively lucky. I've endured only limited bouts of bone pain, nausea, vomiting etc. I've had a prolonged bout with peripheral neuropathy, but it's manageable, at least for me.

This cancer has inflicted hell on my family, however. I've already explained how I was out of work from 2007 until 2011. Our savings disappeared, we couldn't pay our bills. I was able to do just enough to put food on the table. And just about the time I secured gainful employment, wham! Diagnosis:Cancer.

I'd had a grand plan, albeit slightly delusional. I was going to fix it all. Bankruptcy laws are there to protect families like mine. And believe me, all things aside, declaring and leaving a bunch of blood-sucking debt collectors high and dry would soften the sting of having to declare. 

But my rescue plan isn't quite what I hoped it would be. It's going to come up short. And that's where the real pain kicks in. I have to face the fact that my family is losing our home. And while I'm fighting my own battle, my oldest daughter became very Ill. My wife endured serious injuries to her feet, yet now manages to work a job in a restaurant. My son is working. He can't go to college for the simple reason that we lost a car and he has no transportation. My youngest daughter is a high school freshman doing what she can to maintain a good grade average.

And Daddy sits, trying to build an immune system so that he can re-enter the workforce. And he watches the world crumble. My many friends have set up an online fundraising campaign site to try and help with the medical bills and life expenses, but I can't hope for that to be the fix.

My kids were never over-indulged nor spoiled. But I struggle every day to try and provide the basic needs, and I see the toll it takes. And that's what can reduce a once-proud and capable father to tears in the middle of the night.

That is the real pain of cancer for me.

62 Months: Getting Personal

The last day or two I've been feeling a little depersonalized and abandoned. I had my scheduled consult at the Cancer Center. When you go to the Lab, you see a lot of familiar faces among the personnel. After this many visits, they too, recognize you and you get more than the polite greeting.

After the lab work, I will then proceed to the second floor offices to see the doctor. Same routine every week.

But each stage of this process has meant a different medical team. My "pre-transplant" team met with me both before the autologous and the allogeneic transplants. They walked me through every step, addressed every concern. Then I had a new case manager and nursing staff when I was admitted for the transplants. And now that I'm past the transplant, I have yet another medical team to deal with.

Maybe I'm just being a baby. Maybe the chemicals are making me softer in the head. But I feel at least there should be a moment for some sort of hand-off. Maybe say goodbye, so long, good luck or something. Perhaps introduce me to someone from the next team. 

And this isn't just some sort of emotional thing. I'm not just being whiny. Each time I meet with a new team, there is a lot of redundancy. I have to go through my whole history, my list of current medications ( and man, there are a LOT ). I have to re-list all my symptoms. Not really a big deal, as I don't really have anything else to be doing. It's just taking that feeling of familiarity out of it.

Ok rant over.

If you have a minute, could you please leave your thoughts in the comment section on this one?

62 Months: The Waiting Game

If there's one thing that I've taken from my year with Multiple Myeloma, it's that this cancer affects every single person differently. There is no "routine case" of MM and there are no one-size-fits all treatments.

I'm in the recuperation phase of the allogeneic stem cell transplant I underwent on September 4th. I went through an autogolous transplant in March of this year, but for me there was no tandem auto transplant. My doctors went right for the allogeneic as the next step. I have a chromosomal abnormality to deal with (specifically chromosome 17 deletion) and my lead transplant doctor felt this was my best option. We had some difficulty getting approval from the insurance company for the procedure, as it is apparently still considered a "clinical trial." But the appeals worked, and we went ahead.

As far as how I feel, well I believe I weathered this transplant a lot better than the first one. I've been feeling more "healthy", and have been up and about a lot more. They went with high-dose chemotherapy, followed by the allogeneic transplant. The only thing I read about this transplant was from the MMRF website:

High-dose chemotherapy followed by an allogeneic transplant has the potential to possibly provide better long-term control of myeloma (with longer time without disease progression) than autologous transplants. However, this is a risky procedure with a high death rate due to the procedure itself (20-50%). As a result, this type of transplant is rarely performed. 

Well, so far so good. I'm alive, right? I took the chance and so far it is paying off. I'm bald as a cue-ball, my weight is below 200 lbs (not good, but I'm doing my best to fatten up). There's a lot to think about, there is a lot to be on the lookout for. I'm on it, my docs are on it and I'll be battling on.

After-transplant problems