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

62 Months: Breaking Out

Yesterday I got the happy news that my white blood cell count went up to 1.8. At 1.0 you're good to go home.

My right knee, however, wasn't quite ready to let me leave. A neurologist came in and ordered a series of MRIs to figure out why my leg isn't working right. And it hurts like hell.

The food here is great. I'd say restaurant quality. The nursing staff is so absolutely compassionate, caring, gentle and attentive. So having to spend an extra day or two isn't a major problem.

I've missed my family so much. I always love that first few minutes after arrival. I can't wait for some hugs.

Now comes the next part: recuperation and recovery. I'll be under house arrest for a while. When I attended the informed consent class, I was told recovery will take 6 months to a year. We'll have to see about that.

Time to get on with living, right?

62 months: It begins, again

Well I have received my allogeneic stem cell transplant. My best shot at a longer survival rate! I'm feeling good in a lot of ways. My pain is very much under control...I didn't realize how lousy I was until they fixed it! 

Now the waiting game begins. I haven't felt this good in months. I don't have any blood work printouts to follow, but I'm going to have no immune system for a while. But I'll be better soon. They'll look to see if they overcame the chromosome 17 deletion, which would be huge! Longer life span still!

Best shot at a longer survival rate. Beautiful words.

62 Months : The Next Fight

Let's get ready to rumble! I am checked into Hackensack University Hospital. The doctors have concluded that my best option for survival is to do an allogeneic stem cell transplant. The stem cells, in this case, are coming from a donor. A match has been found, and we're good to go.

I had a triple lumen catheter placed on Thursday and was admitted to the hospital on Friday to begin five days of chemo. Simultaneously, my donor is being prepped to have her stem cells harvested.

The gave me the pre-meds ( yeah I can talk medical-ese now) and then they put in IV Fludarabine and Decadron. The second one is a steroid, so I got a burst of energy. Since there's not a lot to do here, I could come clean your house or something.

This will pretty much be the routine till about Wednesday. I've got to do my part and stay somewhat active. When your blood counts drop to zero, anyone who pushes you to exercise is taking their lives in their hands, believe me! I do somewhat enjoy being lazy as it is, no less when there a good excuse to be. And I've got to eat. A lot. I have to pack on a few pounds ASAP because the chemo might make me less hungry. I remember the last transplant my mouth went numb and I lost my sense of tasted. So this like preventative fatness!

More chemo today. But that's AFTER breakfast...

Been a While

I've not updated in a while. Pretty much because I'm in a holding pattern. My transplant team recommended another stem cell transplant, this time utilizing stem cells from a donor. A match was found, and it seemed as though everything was in line and we were ready to get to it. 

Then came the surprise. My health insurer denied approval for the procedure. Didn't see that one coming. My doctors went through the appeal process to provide more information and try to get the insurer to be reasonable. That appeal failed. I was just notified. 

Apparently there is one more appeal. My doctor is waiting to do a phone conference today or tomorrow. He's going to do his best. 

I already had an autologous stem cell transplant. That's a transplant using my own stem cells. They did chemo, then harvested my stem cells in a procedure similar to donating platelets. Then they dosed me with another chemo drug called Melphalan. That cleaned out my bone marrow. They then infused me with my own stem cells. 

It sort of worked. But not well enough. Because I'm considered a high-risk myeloma patient, the choice next was to be the allogeneic (donor transplant). It was explained to me that this would be my best chance for survival. The insurer wants me to undergo the more common practice, which is another autologous stem cell transplant, basically repeating the first procedure. 

However, my team said that this would not be enough to take care of me. It was explained that my life expectancy would be reduced considerably using the tandem autologous transplant. 

So I'm on hold. Life goes on around me. I'm working my job. I'm in a lot of pain, but it's not hard to manage. I get by. The medical expenses are a bit rough. Medicines, co-pays, etc make it tough to keep up. I was out of work for four years and I hoped to work my butt off to try and catch up with my bills. 

US Bank has run out of patience. They're foreclosing on my home.  I'm frightened. Where will I live with my kids? I have to declare bankruptcy as well. The bills got too high. It's my only choice, but I truly feel like a loser. On July 13, it will be one year since my diagnosis. I'd hoped to be better by now, but despite everything, I'm going to fight as hard as I can to beat this cancer. Then I can work on making some miracles happen in the other aspects of my life. 

I'll keep battling till the war is won.