Point of No Return

Up until my meeting with one of the doctors at the Seattle VA Hospital yesterday, cancer was pretty much an academic exercise for me. Obviously, I took it serious enough to subject myself to some pretty nasty and less-than-pleasant procedures and pharmacological fun, but the severity of something that could actually kill me in the space of a few months? Nah, I never get sick. And I mean never, much to the annoyance of those around me. I didn’t need medication with the exception of an aspirin on rare occasion and until last year, I had never set foot inside a hospital except to visit or take one of my boys to the ER for a trampoline mishap (side note:  if it looks too fun to be safe, it probably is. Both boys got broken legs from a trampoline).

That all changed yesterday.



When the first sentence has the words you, diagnosed, fatal, the rest of it ain't gonna be an easy read. Breathe deep, grasshoppa.

The good doctor reiterated the protocol for the bone marrow transplant and gave me more paperwork to review and sign. This is in addition to the stack of papers I signed on Monday, which apparently only consented for participation in the Graft Versus Host (GVH) drug they’re developing and another academic study that is pretty much statistical. I feel like I’m at the closing on a house with the amount of small print I’m reading. There’s apparently a board that reviews the language to make sure it’s not too terribly academic, but you can’t dumb down words like cyclophosphamide. Much to my amazement, my spell check recognizes that!  Go figure.

He gave me a sheet that has the road map of my transplant for the time I’ll be inpatient.  If everything works according to plan, I’ll be coming in Tuesday for some premed dose of Phentoin, an anti-seizure drug. Seizure is a side effect of the type of chemo I’ll be taking. I’ll also be getting Allopurinol which is usually administered to treat gout, but in this case, it also protects my kidneys from the chemo. Finally, I’ll be getting a sulfamethoxazole-trimethoprim antibiotic cocktail. My rule, as of late, has been that if I can’t pronounce an ingredient on the back of a food label, I shouldn’t be eating it, but I’m getting good at these drug names. I guess I need to refine the rule a bit. On Wednesday, I will be admitted as an inpatient for more toxic chemical goodness that will officially be the point of no return. If I were to stop treatment at this stage, it would be fatal for me. If something were to happen to the donor at this point, I would die without another donor, period.

August 14 is Transplant minus 7 days. T-7 will be the beginning of four days of Busulfan and then on T-3 days, I start another chemo drug called Cyclophosphamide and the GVH test drug for a couple of days and I finish up on antibiotics and anti-seizure meds.

Then I get a day of rest.

All during this time my blood production capabilities are essentially being destroyed by the chemo, so I’ll be getting transfusions of red blood cells and platelets I will have absolutely no immune system and I will be feeling very, very ill. The drugs will attack all the fast growing cells which will include the obvious places like my hair, but it also gets my mucous lining throughout my GI track and that will make it all but impossible to eat, so I can anticipate getting my Nutri-fun through my PICC line. I’ve heard that people often can taste things when getting infused and I find myself often smelling something when my line is flushed with saline. Let me just say I’m putting in my order for crab cakes Benedict for breakfast and perhaps a filet mignon Oskar for dinner.  I figure if I’m going to feel like crap, my food should make up for it, right? A guy can dream a bit, right?  I’ll also get one of those insta-morphine buttons to stave off the really bad stuff.

Following the transplant infusion, I’ll be getting Methotrexate, another kind of chemo as well as an anti-fungal Voriconazole, and an anti-viral Acyclovir. During the next couple of weeks, the transplant cells will start to engraft into my marrow and at some point my new immune system kicks in. The other thing that the new stem cells do, as it was described to me, is go to the injury first. In this case, they go to the damaged mucous membranes in my GI track and I start to actually feel better and can eat again. Following closely behind that, the stem cells wake up in my marrow and the white blood cells that fight infection (neutrophils) start coming on line and doing their job. About 11-14 days after the transplant, I get discharged and begin the recovery process.

I’ll be going in for close monitoring regularly until the GVH is under control, I’ve recovered sufficiently, and am strong enough to have my follow-up care managed by the VA in Salt Lake City. GVH affects nearly every transplant patient and even though I may be getting a drug to stave that off, it will be something I have to manage carefully for a few years out and be cognizant of for the rest of my life.

Having that rather graphic picture painted for me, complete with real graphs on the white board, was informative, but a bit tough to take in, considering the details were painted out rather vividly for me including all the side effects, which included the words fatal, catastrophic, and death more than a few times. 

Reading these things in my consent packet was even more difficult. It’s not like I didn’t know that kind of thing was possible, but seeing it in black and white and me signing this stack of papers was hard. It made that academic exercise something real and in a few days it will be tangible. It will be happening. It will be the point of no return.

And even if there is no turning back and it’s going to be a taste of hell, it isn’t Dante’s Inferno. I don’t see a sign that says, “Abandon all hope, ye who enter here.” If anything, seeing such finality in signing these forms, I found myself mildly annoyed if not a bit in shock.  It’s tough to take in, it’s scary, and dammit, I have too much yet to do to be dealing with the business of dying.

So, screw the statistics and let’s beat this. I’m committed…no turning back. You with me?

 

I had tossed a few frogskins to a friend of mine from my writers' group in Minnesota who is participating in the Relay for Life for the American Cancer Society. I didn't give much thought to it afterward, but as the event was today, she did this for me. I've always been the guy raising money for others...being on the other side of the coin is humbling, but I so appreciate her thoughtfulness. Thanks, Malyssa!

 

Be well, please be strong for me, and again, much love to you all.

Today’s music is of course from Kansas, Point of Know Return (not a typo)

I heard the men saying something
The captains tell they pay you well
And they say they need sailing men to
Show the way, and leave today
Was it you that said, "How long, how long?"

They say the sea turns so dark that
You know it's time, you see the sign
They say the point demons guard is
An ocean grave, for all the brave,
Was it you that said, "How long, how long,
How long to the point of know return?"

Your father, he said he needs you
Your mother, she says she loves you
Your brothers, they echo your words:
"How far to the point of know return?"
"Well, how long?"

Today I found a message floating
In the sea from you to me
It said that when you could see it
You cried with fear, the Point was near
Was it you that said, "How long, how long
To the Point of Know Return?" 

Another Transition?

After going through four cycles of consolidation chemotherapy, my body has been pretty consistent on how and when it responds. Some parts of the chemo cycle are tougher than others.  This past week was the tough part.  On day 10, I have reliably become neutopenic, that is to say my neutrophil level (a component or type of white blood cell) has fallen below what is required to fight off infections.  I start taking antibiotics, antivirals, and anti-fungals as a preventative.  If I were inpatient, I would get this lovely trifecta intravenously.  I also have a list of other preventive measures I observe until my neutrophils recover sufficiently.  My white blood cells aren’t the only thing that the chemo hits. Around day 14, I come to what is referred to as the nadir – the bottom – and now, all of my white blood cells (not just the neutrophils) are almost undetectable. In addition, the platelets in my blood fall critically low. Without adequate platelets, we stand a good chance of bleeding to death. That’s a pretty thought, isn’t it?

 

My day 14s have been long days at the hospital waiting for the blood bank to provide a bag of platelets. Unlike most intravenous fluids I get, which are clear, platelets look like a yellow goo and thankfully, they can pump the goo in through my PICC line in about 20 minutes. A couple of days later, my hemoglobin and hematocrit drops and I need a blood transfusion, sometimes two units. It’s during this week that my system is recovering and I feel very tired and end up napping more than usual, sometimes twice a day. At the end of the week, something starts to click inside and it feels like I’m coming around again. That translates into next week being a good strong week…and of course, the following week it begins all over again.


Mmmm, good - yellow goo!

 

But…

The plan isn’t to do these chemo cycles interminably. At some point, there’s some adaptation to the medication, but more to the point, these ‘consolidation’ cycles are done only to keep the cancer in remission until a bone marrow donor can be found. Typically, it takes 2 – 7 months to find a donor with the suitable HLA marker matches. What also happened this week was a call from the VA in Seattle requesting more blood tests, but for my mom rather than myself.  I asked where we were in the search and the response brought me to a new intersection of events: we have a prospective donor. So, there’s some additional screening and testing before I’m involved, but it still translates into the possibility of the transplant happening any time now. I should be very clear in saying that this isn't definite. There may be something that hasn't shown up in previous tests and we have to consider the possibility that the donor, who with all the best of intentions when donating a sample, is no longer willing or able to follow through. So, we're still waiting. 

Suffice it to say, that brings to the fore all kinds of new questions and challenges.

Modern medical science has made the bone marrow transplant a procedure that is a pharmacological wonder. One attending hem/onc physician described the procedure just 20 years ago as barbaric, requiring literally hundreds of holes into bones of both donor and recipient that made the operating theater look more like the set of M*A*S*H than a sterile surgical field. Today, the procedure amounts to prepping the donor with a drug that boosts leukocyte production. The leukocytes are then harvested in a procedure that is similar to dialysis.  The donor stem cells are then separated from the leukocytes and set aside for the recipient.  The leukocytes are then returned to the donor. Easy-peasy, lemon squeezy, right? Well, by comparison to the old method, yeah, but the prep for the recipient (that would be me), is a bit on the scary side.

Essentially, what happens is a near lethal dose of chemo / full-body radiation that, according to one person I spoke to at the hospital, takes me to the brink of death and the stem cells grafting to my marrow bring me back. While it sounds very scary—and I harbor no illusions about sailing through it—I’ve only heard of one instance where someone didn’t make it through the procedure and that’s because he gave up. It will be difficult, it will be a long recovery, but it will end. And my fervent hope is that when it does in fact end, I’m still alive and cancer stays firmly in the rear view mirror!

That’s a rather simplistic picture of the process, but it’s not far off according to what I’ve been told and what I’ve read (This series ofarticles is about as succinct as I’ve seen. They are broken up into bite size pieces and take you through start to finish and aren't written at the post-doc level; and this group of statistics is government-generated and pretty direct if you care to read up on the whole thing…especially for the insomniacs out there!). The reality of the situation is pretty sobering as the intersection, my newest transition, approaches. But just like the first phase of my treatment, my outlook is still pretty optimistic and my attitude still contains a healthy dose of humor and sarcasm. Would you expect anything less?

As always, I wish you all the best of health, strength and love.

Today's music from Elton John: "I'm Still Standing," complete with the original video from 1983. Costumes and filming in Cannes, France by the looks of things.

You could never know what it's like
Your blood like winter freezes just like ice
And there's a cold lonely light that shines from you
You'll wind up like the wreck you hide behind that mask you use

And did you think this fool could never win
Well look at me, I'm coming back again
I got a taste of love in a simple way
And if you need to know while I'm still standing you just fade away

Don't you know I'm still standing better than I ever did
Looking like a true survivor, feeling like a little kid
I'm still standing after all this time
Picking up the pieces of my life without you on my mind

I'm still standing yeah yeah yeah
I'm still standing yeah yeah yeah

Once I never could hope to win
You starting down the road leaving me again
The threats you made were meant to cut me down
And if our love was just a circus you'd be a clown by now