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

Round 2

Yesterday marked the official beginning of round 2. I got to be on the receiving end of a large needle into my spinal cord, but thankfully, my hem/onc doc is really good at this particular kind of intrathecal chemo and with the help of a little happy juice, felt no discomfort at all. She has earned my trust with some of these less than pleasant procedures. And I got to watch her go toe-to-toe with another hem/onc doctor from the Huntsman. I know she’s got my back…even if she’s putting a needle in it. It’s not the same thing as being stabbed in the back although it sure looks like it! I got the ok to floss my teeth and shave until my numbers dip again. Since my hair hasn’t fallen completely out, I trimmed it down, but it’s uncomfortable to wear a knit cap. It has this way of pushing the hair stubble against the grain as the cap is settling in. I’d rather wear a knit cap while sleeping instead of a ball cap since there’s the brim, of course, but hey, I’m working through the fun.  My whiskers had been falling out as well, but since things have come to a halt on the deforestation, I shaved them all off and I suspect I won’t have to pull out a razor for some months to come.

Today, I got a heavier dose of the Cyterabine. I get a concentrated dose every 12 hours and then I’m free of the IV pole. The goal here is to drive my white count back down to nutropenic levels and then when my neutrophils recover, then I go home until either the bone marrow donor is ready or my next 28-day cycle starts.  So, it really comes down to how my body responds to the chemo and recovers. Suffice it to say, I am hoping that I’m back in my own digs VERY soon. Yeah, I do like the people here and the food is pretty good, but I’m kinda partial to my own four walls instead of these institutional ones.

My transplant application has been forwarded to Washington, DC and my name is now officially on the radar in Seattle, so it’s now the official military “hurry up and wait” game. From my standpoint, I just want this over and done and since I’m pretty white bread Caucasian, my wait time will probably not be too long, but I’ve been advised that it could be a matter of months, so I’m weighing the realistic with the part of me that just wants this to be done.

I had the same nurse with the twisted sense of humor today and that kept me smiling. She had an assistant whom she was training, whom I found had spent some time in France, so it looks like I’ll have someone with whom I can practice my fragmented French. Language is something you remember like riding a bike, but if you don’t use it, you get rusty.

The quiet, boring day is a good one, medically, but of course I’m itchin’ to be productive and involved. We’ll get there and thankfully, I’m able to work with my company to stay involved. Thankfully, I have some things that I can work on and stay a part of things.

That tonight’s entry is rather short is a good thing. You can be sure that something will arise to keep things interesting, but for today, it’s mercifully boring.  And that’s a good thing! Today's music video is another throwback to the 80s when music videos were in their infancy. Hold On by Kansas.

Be well, stay strong, and much love to you all J

You Are Here

Friends of mine who lost their son to cancer just a few weeks before my diagnosis have been keeping tabs on me. After attending the viewing for their son, Stephen, and being a bit emotionally fragile for my own obvious reasons, I wasn’t sure how or if I would be able to hold it together when Jeff and Jane visited my hospital room. Amazingly, they were able to be honest about their own hurt and at the same time make me feel comfortable. There was no awkwardness, just a timeless friendship that was strengthened by something neither of us wanted. Before leaving, Jane left a button on my table that said, "No one fights alone." That statement of solidarity meant more than you could know. And it's true, I'm NOT alone in this battle. Without doubt, adversity has the uncanny ability to bring out the best in people. Ultimately, it makes us human. Admittedly, there are days I’d appreciate being a little less human, but I’m better equipped to handle some of those postgraduate courses of the ‘school of hard knocks.’ Jane forwarded thisYouTube video today that Stephen enjoyed.  It was a parody of the S*#& My Dad Says, but adapted for cancer patients.  It gave me a good chuckle because I could identify with so many of the common experiences. But more than a chuckle, I found that the creator of the video, Woody Roseland, had done a TED talk locally.  I watched that video and was truly inspired because, once again, someone who has clearly had it far rougher than I was upbeat, full of humor and wisdom beyond his youth.

One of the analogies he used was a simple light rail map that had the little sticker that said, “You are here.”  We’ve all seen maps that have that marking on floor plans and maps and even the cartoons that say “You are here when you should be here!” For him, those three words were loaded with meaning.  You see, he had beaten cancer five times in five years by the time he was 21 and had met fellow survivors during his many treatments who ultimately lost their battle. But he was still here. I don’t face as dire circumstances as Woody, but I bear the same responsibilities: I am here! And while I’m here, I have a responsibility to fight this cancer and to encourage others to do the same. That’s what I can do right now.  When I’m past it, I can do other things. This is my battle and many of you are fighting alongside me and I’ll be repetitive, redundant, and even superfluous in thanking you for being here with me, but there are other battles you may have where being here may be the impetus for you to engage and make that difference. I can’t tell you what that is and I won’t guilt you into doing something. You’ll know what it is you need to do.

During the night, I must have rolled over on my PICC line and one of the little caps came off.  I, being paranoid about sanitary conditions on this thing, called the hospital and they said I could come through the ER and get the cap replaced.  They also gave me some gauze to put over the whole apparatus so it doesn’t snag, so I’m good there.  While I was at the hospital, I was able to track down my ‘he-monc’ (hematology/oncology) doctor and we discussed where we are in the big scheme of things.  Monday, I’ll be admitted for about a week of consolidation chemo.  It’s more of the ceterabine that I was on the first week, but at a higher dose and it’s there to basically keep things in check.  I won’t have to do the “red devil” again and this is for four shorter stints.  As long as I’m not running a fever or having infections at the end of the week, I get to come back home.  We’ll do this every four weeks until my donor has been identified and I head up to Seattle for the transplant.  I think the big horse pill I had to swallow was that I’ll need some rather intensive monitoring for the next year or two as the new immune system kicks-in and becomes mine. The doctor in Seattle even suggested I be physically living with another as I could get very sick very quickly.  I’m working through that one in my mind.

But I am here.

And I intend on being here two years out and another two years beyond that and so on. So, we’ll work through the details. There have been an awful lot of these painful life’s lessons I wish I weren’t having to learn this way, but this postgraduate-level stuff in life isn’t intended to be easy. And I hope that you’re picking up some of the lessons as well without having to go about it this way. I can tell you that had someone tell me these things before, I might be a touch patronizing, but maybe that’s the reason I’m having to learn them in the way I am. All I can say at this point is that I’m staring at a complicated map and I see an awful lot of information to digest. I see as well a rather long road from here to the end of my encounter with the big “C.” This is not a sprint, but then again, I’ve never been fast. My strength has been endurance, whether it has been in goals or in my cycling events. The end game for me has been about finishing the race before me. Whether I finish first or last, I will complete the course and I will do it well.

So for now, I...am...here.

And as always, I’m counting on you to keep me accountable, to keep me honest, and to keep me focused…and of course to get through this whole ordeal with a smile on our collective faces. Song of the day - "I'm Still Here" by Vertical Horizon.

Be well, stay strong, and much love to you all.

Well, that was pleasant...or not.

My room with a view was hardly the backdrop of a picturesque Italian countryside drama.  It felt more like a horror movie with a Roman numeral behind it – Chemo II: The Reckoning!  Watch as the 6” needle gets buried into the victim’s pelvic bone to suck the very marrow out (cue the screams!). Cringe as the PICC (parasitic insertion of core creatures) line is put precariously close to the heart (gasp!) to turn our hero into a host to alien toxic life forms. “You’ll feel a little pinch and then some pressure.”


The Leukemia Diet ® Day 1. This is *not*
the way  I planned on losing that last 10 pounds!  I took this photo last night. Weight: 185. Not the recommended way to lose weight!
 
  

All kidding aside, it was a rather painful morning. Because the initial bone marrow biopsy wasn’t looking at anything serious, the amount of marrow drawn out wasn’t enough.  That news didn’t sit well with me last night when I was told that I’d have the great good pleasure of having another hole in my hip bone to pull more marrow out for samples and that I’ll have to have it done again in 2 weeks to ensure the leukemia has been sufficiently vanquished and again should I need a marrow transplant (which is likely) and again in a year. I can push my way through pain, but on the other hand, it’s not something I revel it.  I know some people really enjoy it, but I assure you, I don’t happen to be one of those said people! The other rather uncomfortable but again not unbearable procedure was the insertion of a PICC line into my arm.  A PICC (peripherally inserted central catheter) line goes in just below the bicep and works its way along the vein to a place just above the heart.  It can stay put there for days or even years where a typical IV has a relatively short period where it is effective and before there are other effects where it needs to be relocated to another site.  The other good thing about a PICC line is that blood tests can be drawn directly from it instead of having to be stuck with another needle every time it’s needed. There’s a guy that comes in here from time to time who has had a PICC line in for over four years. I’d rather not have this thing with me after leaving the hospital, but…I don’t want to have it put back in either, so we’ll cross that bridge when we come to it.

The painless part of the morning was talking with the transplant psychological team. They asked me about all kinds of things to make sure I was emotionally coping with what’s going on here.  I was pretty up front in saying that it really hadn’t hit me fully. I’m sure it will and I’ll be able to just let down in the privacy of my ultra-posh hospital room! We talked about the transplant process and later in the day a social worker talked a little more about the actual process. There’s a lot that is coming together from the periphery that will come together soon enough.  So much has happened in such a short time.  Just a few days ago, I was living a normal life, pursuing the dream (and finding it, really!), and then my world turned upside down and the thing that I always saw as happening to someone else was happening to me.  Yeah, *it* (and you can fill in the blank of what *it* is) can happen to anyone, truly.

There’s nothing like an event of this magnitude to change your perspective on the world and to prove again that there is so much to be grateful for. That’s honestly not a bunch of fluff and I really do get the fact that at any time now, the nastiness that is chemotherapy will start to make me feel like about a million dollar debt with the mafia coming in to collect the vig a month early! Truthfully, though, as I take my IV pole out on a walk to do its biz (since I don’t have the dog with me...and seriously, where are the fire hydrants in these hospitals?!), I see others who are in pretty rough shape, far rougher than I. I know full well, too, that on the other side of this, there’ll be some things I will have that I didn’t have before that will put me in the unique position of ‘paying it forward’ to someone else who needs it at just the right time.

Multi-tasking at its finest! Editing a document
while taking a call and getting chemo all at once.

As each day goes by, I find myself surrounded by the kindness and best wishes from people from my past as well as my new reality, and some that are part of both. I was pleasantly surprised to have a cookie bouquet delivered at lunch from my new workplace. They have been so supportive and this just capped things off. Having my mom here when the toxic orange fluid entered my body to begin the war on this thing helped me to see that no matter how old you get, you’re still a mama bear’s cub. And closing out the day, it was so cool to see a high school classmate with her partner and son appear with a really nice gift and possibly a date this weekend to play cards or a board game. This place turns into a ghost town on the weekend and being here alone ain't a good thing.

It’s the little things that mean so much. Thank you to everyone who has reached out in kindness and in even the smallest gesture to support me.  Y’all are awesome!