Seriously?

I’ve had the great good fortune to be attended by world-class doctors. My attending physician and the fellows during my stay at the VA Hospital in Salt Lake City were affiliated with the Huntsman Cancer Institute and I’m finding out the doctors here in Seattle are similarly affiliated with another very well respected cancer hospital, the Fred Hutchinson Cancer Research Center, or “the Hutch,” as I hear people call it. It turns out that the stem cell transplant procedure was pioneered there and my attending physician is a veritable rock star in the hem/onc world, often away on speaking tours. To say I’m humbled to have this caliber of people in my court would obviously be an understatement!

In larger-than-life people like this, you might expect to come across a doctor with the stereotypical “god complex,” but I honestly haven’t seen that. I only had one encounter with one who was a bit on the insensitive side, but we sorted out our differences and as far as I could tell, all was well with the world afterward. What I haven’t quite gotten used to, though, is the matter of fact way some pretty ugly facts can be communicated. Some involving the side effects of the treatment are really hard to process, others leave me shaking my head thinking, “Seriously?” Yeah, I know they all mean well and it’s all in a day’s work, but feelings sometimes get ignored when the greater issue is saving the life. In the grand scheme of things, that makes sense, but the flip side of that coin is that feelings really have to be taken into consideration, precisely when you’re talking about saving a life…it’s the life which is at stake.

That may sound obvious, but the heavy conversations with doctors can make me feel like I'm missing the forest for the trees, so to speak. It’s so easy to focus on a detail and zone out while the rest of the paragraph the doctor is speaking just flies over my head. That’s the best reason I can think of to have at least one other person with you as you are working through one of those difficult conversations. It made a world of difference when I got my diagnosis as I just wasn’t able to process the whole picture, let alone formulate questions.  

It has been interesting and challenging as doctors have attempted to communicate next steps and side effects to me. The more sensitive issues I’ve tried to bandy about with some humor to make the message a little less difficult or awkward, sometimes to the dismay of the one trying to impart said message, but…I am, without a doubt, the eternal class clown underneath my staid exterior. Recently, a friend of mine welcomed me home from the hospital after a round of chemo and told me in the same breath that he was now a member of the cancer survivor club. He can be a cut-up like me, but his doctors were far less amused by his repartée than my doctors have been with mine…he just needs more practice, clearly. While my doctors learn quickly that while I do pay close attention to everything they say, I will be quick with a pun, a double entendre, or a word play to keep things a little less dour. After all, you gotta keep it just a little on the light side when you’re talking about dark topics. Even checking in, I'm quoting Monty Python lines … I'm getting better. I think I'll go for a walk. I feel happy!

And then there are topics that you just have to learn to take in stride because it’s all part of the game that is cancer, like all the really interesting changes that happen to your body. One of my first hem/onc doctors very sweetly put her hand on my shoulder and said, “You know, you will lose your hair.” True to form, I retorted, “I know, I saw the movie.” About three months later as I saw my hair returning, I saw her in the hallway and told her with great delight about this discovery. She got me back from the first time. “Well, you know,” she said, “you’ll lose it again.”

Touché, madame doctor! Well played.

During a conversation with one of the docs last week, he casually said to me, “You know, it’s a good thing that when you get to be your age; body image is far less an issue than with younger guys.”

Seriously?

My age? Doesn’t he realize I’m the youngest guy in the ward? I know, I know, that means diddly! I’m 50 freakin’ years old. That is my age. Now, this doc probably isn’t too much older than I am, but surely, he must have had some of the emotional struggles as the gray starts encroaching in on previously uncharted territory and the skin is a little less taught, not to mention all the other lovely physical changes that are part and parcel to aging. But let’s not forget that recently recovered hairline is about to recede all the way off again and we can probably add a little puffiness from the steroids to stave off the GVH...oh and damn, thanks to the chemo weakening so many things all over my aging bod, I broke yet another nail! Sorry, doc…body image is a big deal.  I can only imagine how women going through this feel. When I lost my hair during the first round of chemo, some nice people said I looked rather academic and my brother even shaved his head as a gesture of solidarity, but… *sigh* there’s no getting around the body image issue. It’s just as hard for us middle-aged folk as it is for the young guys.

And making this even more fun, I got a call from the MTU pharmacy at the VA Hospital here in Seattle this afternoon as I was on my way out, asking me what color the lumens of my PICC line were. That was an entertaining discussion of course, but it was outdone by the next call from one of the nurses at the MTU at the VA Hospital asking the same question. Then, of course, I got the fun news that I would be admitted tomorrow night for pre-meds instead of Wednesday morning. Oh, let the fun begin a bit early, shall we?

Seriously, I go to bed tonight with a lot of trepidation. I know it's gonna suck and there's no turning back. I can kid around and make a lot of jokes about it, but in the end, it's a scary proposition. I've received a lot of rather long, well thought-out and heartfelt e-mails and well wishes in the past 48 hours which tells me that there are a lot of people sending their prayers, best thoughts, and love my way. Over the next few weeks, I'll need all the available "close air support" you can muster.

Be well, stay very strong for me, and mucho màs love to you all.

Music for the day from Incubus - Drive

Sometimes, I feel the fear of uncertainty stinging clear
And I can't help but ask myself how much I let the fear
Take the wheel and steer
It's driven me before
And it seems to have a vague, haunting mass appeal
But lately I'm beginning to find that I
Should be the one behind the wheel

Whatever tomorrow brings, I'll be there
With open arms and open eyes yeah

Whatever tomorrow brings, I'll be there
I'll be there

So if I decide to waiver my chance to be one of the hive
Will I choose water over wine and hold my own and drive?
It's driven me before
And it seems to be the way that everyone else gets around
But lately I'm beginning to find that
When I drive myself my light is found

Whatever tomorrow brings, I'll be there
With open arms and open eyes yeah

Whatever tomorrow brings, I'll be there
I'll be there

Would you choose water over wine
Hold the wheel and drive

Whatever tomorrow brings, I'll be there
With open arms and open eyes yeah

Whatever tomorrow brings, I'll be there
I'll be there

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

In Search of the Authentic

Being weakened forces you to be introspective. Doctors only add to the process in that they won’t let you just passively lie in a hospital bed whilst anointing ministrations of highly developed science over your forehead or have their acolytes do it intravenously! Alas, I regret to inform you that the great mysteries of the caduceus will not be revealed to you under the auspices of some arcane ceremony. Nope, not gonna happen!

When you’ve gotten sick to the point of being hospitalized, the doctors are more concerned with the great subjective things like what your pain is on a scale of 1 to 10 and the color and consistency of your poop. And while I’m not making that up, and while it’s very true that there are a lot of highly confusing terms, abbreviations, and meaningless numbers (to us laypeople) on a lab report, it’s something you have to dive into to understand, seriously. And you really need to understand as much as you can…because after all, it is all about you and you’re pretty damned important if I do say so myself!

Far from being an exercise in ego or self-absorption, taking everything in, is essential to your healing and as I’ve found over the last couple of months as an inpatient, it’s essential to transforming into a more authentic person. Now, neither healing nor transforming into the authentic are mandatory, but I daresay that we all want to get and feel better at least. It’s no fun being in pain or feeling debilitated in any way. But I take it a step further. Why would I want to go through this hell if I’m simply just feeling as good as I was before I started? Let me go back to the beginning of this post to answer that – being weakened forces you to be introspective, to look within yourself. The key, of course, is what you do once you’ve gazed at what’s inside.

I’m not suggesting that there’s some great revelation, but there just might be.  More likely of what you’ll see is the real person inside and depending on how much we delude ourselves will determine how much of a surprise the ‘big reveal’ is.  If you’re at all like I am, it is like layers of an onion and over time, a new layer gets pulled back until you get to the core…and like any good sweet onion, there are a lot of tears involved. Oh yeah, there are tears involved. Shoot, I cry at the drop of a hat these days and it could be for just about anything – a song, a cheesy advertisement, or because maybe I’m overwhelmed with the magnitude of what I’m walking through. I’m not entirely unconvinced that the medications I’m on play with my emotions as well. What is very likely happening, is more the body’s response to the chemotherapy as much as the actual drug itself. The brain fog or “chemo brain” that I alluded to in my last posting is a direct result of the chemo drug. From what I’ve been able to find, studies show that as much as 80% of cancer patients deal with some sort of cognitive impairment as a side effect of chemo treatments. Other emotional responses hit us in a unique way as individuals.  How we respond to the diagnosis, our support network, the financial burden, and so on all make an impact on the emotional trauma and where any one of those stressors would be bearable, the sum total sometimes just becomes overwhelming and the littlest thing can set us off into our own China syndrome.

Part of my journey into cancer has pointed me in directions I wouldn’t otherwise focus; It has certainly opened my eyes to a number of things I wouldn’t otherwise see; and it has forced me to once again look within myself to figure out who I am. If you’ve been following my writing, you may notice some recurring themes and I think it’s fair to say that the reason for that is because my own ‘big reveal’ isn’t something that has happened all at once. It’s much like a play where there are several scenes that develop the character and prepare us onlookers for the big dénouement at the end where we all figure it out at the same time. If you keep following my stirring narrative, you may get a front row seat to watching my ‘eureka moment’ as well.

I don’t think being introspective has to be an exercise of ego any more than it is one of mid-life crisis. It certainly can be and if it is, getting beyond the self-centered nature of who we can meander toward as American creatures of habit is probably a good exercise. But what I’m getting at is more of an honest inventory of looking ahead and making the most of our life experiences up to this point. My bald pate, even under the clever disguise of a hat, is a great big flag to other cancer survivors and no matter where I go in public these days, I can escape the scrutiny and I should add the vocal support of others. In getting a spare key this morning, the person who assisted me at Home Depot was 15 years cancer-free and she didn’t let me get away with that key until she encouraged me in my own struggle…and it is there where I have to begin passing it on to someone else who needs what I have.

Sunday night, I was finishing up a post when I got an instant message from someone I have known for many years, but hadn’t reconnected with since returning to Utah. He offered his well wishes that I had just gotten discharged from the hospital and feeling well and in the next sentence was nervously volunteering the information that he was dealing with a tumor and all the unknowns that go with it. Introspection just became active and rather than simply spouting a lot of things I thought he should do, I could just be and let him be as well and let him get the nerves and the fear out of his system. It’s what I needed when I found out what I was facing. I’m sure he’ll come through it just as well as I’ll come through my own struggle, but it showed me in no uncertain terms that looking inward is a good thing if it brings about a change for the better. I’m hoping that the transformation continues to be one from one of fear and pain to one of offering friendship and solace; from one of self-reliance to interdependence; and from being the one seemingly with all the answers to the one with always room to grow. Yeah, there’s a lot left to figure out as I’m sure there’ll be quite a few nights where 3:00 a.m. and sleep won’t be matching up in the coming months, but it’ll be those nights where I’m thinking about myself, but there won’t be any pity party  invitations sent out, but rather I’ll be trying to work out who the guy is inside who is actually the authentic one.

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

Today’s music from Alanis Morisette – Underneath

Look at us break our bonds in this kitchen
Look at us rallying all our defenses
Look at us waging war in our bedroom
Look at us jumping ship in our dialogs

There is no difference in what we're doing in here
That doesn't show up as bigger symptoms out there
So why spend all our time in dressing our bandages
When we've the ultimate key to the cause right here
Our underneath

Look at us form our cliques in our sandbox
Look at us micro kids with both our hearts blocked
Look at us turn away from all the rough spots
Look at dictatorship on my own block

There is no difference in what we're doing in here
That doesn't show up as bigger symptoms out there
So why spend all our time in dressing our bandages
When we've the ultimate key to the cause right here
Our underneath

How I've spun my wheels with carts before my horse
When shine on the outside springs from the root
Spotlight on these seeds of simpler reasons
This core, born into form, starts in my living room

There is no difference in what we're doing in here
That doesn't show up as bigger symptoms out there
So why spend all our time in dressing our bandages
When we've the ultimate key to the cause right here
Our underneath

The Waiting Game - Fending off the feeling of Helplessness

I think the hardest part for me about being an inpatient is waiting.  I’m the kind of guy who needs to have a lot of irons in the fire to keep me engaged.  Having things to keep my mind occupied and working is not just good for my mental well-being, it’s critical to my overall health. Since I really had no symptoms of acute leukemia, it has been a matter of believing the lab reports were true. Talk about the makings of a conspiracy theory!

Cancer treatment involves patience as much as anything and it’s something I don’t have a lot of when it comes to my own health. Perhaps, it’s because I don’t get sick very often and when I do, I kind of muscle my way through it with minimal medication. That approach to health would have likely killed me with this leukemia, so I’m going to have to re-evaluate the way I take care of myself in the future. My treatment now involves a modicum of faith and a lot of waiting.

My second round of chemotherapy began yesterday.  I got two doses of Cytarabine 12 hours apart. I get today off and the same thing tomorrow and again on day 5 with a break on day 4.  Then, it’s a matter of watching my white counts dip and recover before going home again.  We’ll repeat this cycle every 28 days or until I get the notification that I have a bone marrow donor at which time I’ll be on my way to Seattle. It’s a total waiting game. Of course, once I go to Seattle, it’s another waiting game as my body sheds its damaged immune system and assumes the new one.

The bone marrow transplant is a mystery to me even though it makes sense. Essentially, it works something like this: I get more chemotherapy that decimates my bone marrow and I get really sick. I’m so excited about that as you might imagine. Then I get the stem cells from my donor and we watch and wait for the new cells to take to my system and in a twisted form identity theft, I assume the immune identity of my donor.  I had spoken to another bone marrow patient here at the VA who had been to Seattle and back. His donor was his sister and he commented that when he returned, his blood type was the same as his sister and it showed that he was a post-menopausal woman. He said that he asked the doctor, “So, does this mean I’m going to grow boobs?” Not missing a beat, his sister who was with him said, “Honey, I paid for these. You can’t have ‘em!”

While I don’t have any say on who my donor is, I’ve been told they’re on the look-out for a healthy 20-something. Since many of the donors actually come from Germany for us white bread Caucasians, I’m hoping my donor is a tall blond muscular guy named Hans (or Franz…or Ahnold?). The reality is that nothing on the outside changes and in fact, I’ll have to start over with immunizations like a newborn. In case I do take on a bit of an accent, you’ll know vhy, ja?

As much as treatment is a waiting game, there’s a sense of helplessness about healing.  When my son had heart surgery, that was the overwhelming feeling I had when I would be there in the hospital with him. Seeing him unconscious or in pain from surgery, I just felt unable to do anything other than be there with him. I had to wait just like I have to wait now.

Helplessness is something that doesn’t have to lead to despondence or despair. In fact, as Clint Eastwood said in The Outlaw Josie Wales, “A man’s got to know his limitations.” In a nutshell, we have to know ourselves. Being a patient, I’m learning my own limitations and I’m recognizing some things I just didn’t care about before. It’s partially about age and it’s partially about having to live with leukemia as part of my history. Health isn’t something I can take for granted any longer. But I’m not helpless. Clearly because I’ve taken care of myself, my body has rebounded from the chemo rather quickly to the amazement of my doctors. And it’s what I have to do after I’m done with treatment and returning to my routine. But more than that, there’s the courage to act outside of the helplessness. I came across this quote today and it spoke to me about this helplessness I fall into about having to wait for a number of reasons, but ultimately, it comes down to simply not living a life of fear, helplessness, and regret, but one of courage in again, being ourselves:

The answer to helplessness is not so very complicated. A man can do something for peace without having to jump into politics. Each man has inside him a basic decency and goodness. If he listens to it and acts on it, he is giving a great deal of what it is the world needs most. It is not complicated, but it takes courage. It takes courage for a man to listen to his own goodness and act on it. Do we dare to be ourselves? This is the question that counts.
                - Pablo Casals

So, while I may be in the waiting game, my challenge is to find and be myself in the midst of it all and at the risk of coming across as didactic or preachy, may I challenge you to find that part of you that the world needs most and muster up the courage to act?

Music du jour courtesy of Israel “Iz” Kamakawiwo’ole – What a Wonderful World

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

Too Much Ahead Not To Fight

The sheer trauma of facing the “big C” seems to be less daunting as the reality of what the treatment entails comes out. Treating any cancer isn’t something you can simply prescribe a standard drug regimen or operation. It’s a complicated, messy, painful process that dances the fine line between art, science, and intuition. I’ve spoken with two other AML survivors and their treatment is similar to mine, but because our age, physiology, and details differ, there are different stories.  I’ve had two survivors of other blood cancers visit me thanks to the transplant social worker here at the VA who have shared their experience with me and while their histories were much more severe than mine, they had as well more remarkable survival stories.  It gives me great hope that, given my own situation, that I have both reason to be optimistic and to take this thing very, very seriously.

I was given a bit of a setback this morning as I took my IV pole for a walk.  The fancy yellow bag that all the toxic waste gets disposed in, flagged a nurse in the oncology ward less than 100 feet from my door.  He unceremoniously told me to go back to my room and chewed out my nurse for having the gall to let me walk outside my room. That escalated things in no time flat and I got an immediate apology from my nurse, who has been SO wonderful that there was some protocol that apparently prevents me from going outside my room with anything chemo-oriented. She apologized for the way this other nurse treated me and escalated it to someone else who escalated it further and I was visited by the head of safety, who brought things back into perspective.  She came in and didn’t do anything but introduce herself and make sure I had everything I needed. She listened. She didn’t draw out the instance, but I did bring it up in a way that allowed her to take care of the situation without making a case out of it. I think between the two of us, this unpleasantness won’t happen to another patient. While I absolutely want to observe protocols and the safety of others, I’m an inpatient, not an inmate. I think that drove the point home. Suffice it to say, she did it right.

So, it looks like I will be doing 10 push-ups every time I go to the bathroom instead of walking around the floor. That’s partially due to the Leukemia Weight Loss Diet Plan® not exactly working.  I’m up another pound, so they put me on a drug to make me urinate more frequently.  Lovely, huh? I suppose that wouldn’t be such a big deal except that I have to unplug the drug metering devices that push the medication through the IV into me every time I get up out of bed. It’s pretty inconvenient, all told.

As Friday afternoon descends on the hospital, you hear the typical things you would at any other workplace.  Co-workers wish each other a good weekend and it strikes me that I’m on what I used to call “perpetual Saturdays.”  It really doesn’t matter what day of the week it is for me.  I’m here.  Weekends were not made for Michelob in the hospital.  They are quiet, eerie places where the walking wounded rest. Thankfully, I have a retinue of visitors lined up for fun and games and I even have a junior slinky on my hospital tray I can play with.  I’ll bet you haven’t seen one of those bad boys in years, huh?

So, we’re now moving into the stage of things where it appears to be the classic military, “hurry up and wait” phase.  My nurse brought in a trend of my labs and it’s fascinating to see just how off my numbers are and yet I’m feeling just fine.  It makes me wonder just how good I’d feel if they were where they should be – yet another reason that I am the eternal optimist. 

A rather new acquaintance asked me essentially what I wanted to do when I got through this ordeal.  I started making a bucket list of sorts back when the movie of the same name came out, but nothing firm.  My goals had a lot to do with simply getting back to Utah for so many reasons, the least of which being, it is where I just feel I belong. But, as I pondered that simple question, one of the first things came to mind was to complete a century bicycle ride (100 miles) for Team-in-Training, a charitable organization that supports the Leukemia & Lymphoma Society.  I had supported a high school classmate who ran marathons for the organization and I guess now it makes sense for me to give back to an organization that is out there for me as well.  I’d really like to ride another AIDS LifeCycle, but this year, I think it’s safe to say that’s not likely going to happen. I don’t have a formal ‘bucket list’ even though mortality had its sites on me.  So, I told my new friend that I had “too much to live for, too many unspoken desires, too many things yet to do, too many stolen kisses yet to claim, too many mountains yet to climb…just too much ahead not to fight.” And so it seemed that if there were any other motivation, that was it – too much ahead not to fight. As if there were any other option.

Game on!

Thanks again to you all for fighting with me.

Dancing with the "Red Devil"

The list of chemicals being introduced into my body is long and mostly unpronounceable. Perhaps that’s why they just say, “chemo.” The idea behind this attempt to turn my body into a toxic wasteland is to reduce the leukemia cells (which would otherwise turn my body to a corpse) into own wasteland and eliminate it out through the urine.  I’m sure you could come up with a great tag line with that image. I prefer something elegantly simple, like, “Piss off, leukemia.” Pardon the coarse language, but this is war – war for my own life, quite literally.

Chemotherapy is a complicated balancing act of putting no-kidding toxic chemicals designed to destroy specific kinds of cells into your body without killing too many of the good cells.  The side effects are many and if you’ve watched any movie dealing with the ravages of cancer of any kind, you’ve seen the side effects – nausea, vomiting, loss of hair, etc. So, there are other drugs introduced to counter the side-effects and still more drugs to counter effects of the cancer itself, so there’s a lot of stuff going on inside this finely-tuned machine we walk around in every day and otherwise take for granted. 

Better life through chemistry! And to think, up to this point in my life, I was happy with caffeine and the occasional aspirin.

Cancer – and leukemia is simply a cancer of the blood – is a failure of said body’s finely-tuned immune system.  It’s likely that we all walk around with some degree of mutated cells that if left unchecked or uncontrolled by our immune system, grows uncontrolled.  That’s what happened to me. I don’t smoke, I have a glass of wine or cocktail once every blue moon or so, I eat well and I exercise several times a week. I’ll never be a Calvin Klein underwear model, nor am I the model for the food pyramid and anyone who knows me knows I have a thing for dark chocolate – especially when there’s a Godiva key lime truffle involved – but seriously, I’m pretty healthy all round. This was a result of something totally unforeseen. Up to this point in my life, I was the visitor, not the visited. These things typically happened to someone else, not me. Well, it happened to me and while I’m not reveling in the sudden change of events, neither am I throwing a pity party.

I am going to dance with the Red Devil.

The “Red Devil” is also known as Idarubicin.  It’s one of the two major chemicals being injected into a catheter running into a vein just below my left bicep running up over my heart called a “PICC” line. I wrote about it yesterday if you want to go back to it.  Today, the second of three doses of 24 ml of the red fluid was slowly injected into that port.  It’s a surreal thing as the nurse is dressed in a hazardous material gown and times the push.  As the clear line turns the reddish-orange color with the approaching poison, I know that it’s going to attack the rogue cells in the marrow of my bones that will otherwise take me out like yesterday’s garbage.  I also know that I stand a chance of feeling very ill because of the battle going on inside of me. I challenged the doctor about this when he told me I needed to be admitted right away because nearly half of my marrow was filled with cancerous cells.  It didn’t matter that I felt perfectly fine. In less than a month, I would feel deathly ill, and in another two, I could be dead. Swallow that pill! But starting the battle with the rogue cells with the chemical weapons of mass chemical destruction was the dance I must enter into in order to survive.

So, although if you saw me on the dance floor, you’d know I would never be chosen for “Dancing with the Stars.” No, you’d likely think I was a candidate for epilepsy rather than cancer, but I’m dancing with the Red Devil like my life depends on it…because it really does. And thankfully, I have none of the side effects so far that were presented to me. I continue to be optimistic and upbeat thanks to the many well wishes and kind words from all over the world (literally).

The Red Devil has one more number on my dance card tomorrow at 2:00 pm along with another slow dance with a drug called Cetarabine. We’re getting to know each other over a seven-day period. It’s my leash of sorts and it comes with me on an IV pole everywhere like a little lost dog.  I’ve been taking him on walks up and down the hallways to find that elusive fire hydrant so he can do his business, but I’m the only one who gets it!

Thanks to everyone for all the support, kind words, and encouragement! Keep the positive coming.

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!

Let the Games Begin!

I still don’t think this has sunk in.  I haven’t mentally processed the fact that I even have leukemia, let alone that it is a deadly disease that threatens to kill me, left unchecked. From the time the doctor faced me and told me the stellar news, I’ve been in practical mode, getting things done: packing for a month-long stay (maybe more) at the hospital, doing laundry, setting bills to pay, and talking to family about what I’m facing in the days and weeks ahead. Thankfully, I was able to come home over the weekend and get some of the details taken care of, but when your life has just been ground to a screeching halt like this, it feels like everything is in a state of chaos.

Physically, I have felt tip-top with the exception of a headache courtesy of my spinal tap on Friday.  I still have doctors coming in today, surprised that I’m feeling as well as I am considering that 50% of my bone marrow is apparently teeming with cancerous cells. Apparently 20% is the benchmark, so you can see this isn't inconsequential. That’s a comforting thought, huh?

Mentally, I think I’ve accepted what’s in front of me and have mapped out what I can expect in broad-brush terms. That helped me to discuss with my employer how best to move forward. Everyone there was incredibly supportive, far more than I could have expected, especially in that I’ve only been a part of this organization for just over three months. And the real kicker is that the blood test that started this whole adventure was a part of the company’s insurance incentive. I’m not the first person to have had his life literally saved as a result of this simple screening.

I’ve spoken to a number of people in preparation for the next month and on the one hand, I’m faced with the stark realities of chemotherapy and its side effects; on the other, I’m feeling better about being able to weather it. I’ve also run across people who would urge me to seek alternative forms of treatment or fly to another city for another treatment option. As far as I can tell, I’m in the best of care and am being handled carefully, deliberately, and aggressively to ensure my odds for survival are the best.

Thanks to my friends Betsy Peterson and her partner Tracey Rush who is on the downside of Hodgkin’s lymphoma (the crowd roars), and their friend, Linda Huntimer who is also a cancer survivor and was able to get me a lot of practical information quickly. Big thanks to Paul Pavao, friend of mine from many years ago and father in-law of my own daughter, who is a fellow AML-survivor.  That my daughter’s father and father in-law are both dealing with acute leukemia kinda had her more than just a little concerned.  What are the odds? 

So, I’m sitting in a private hospital room – a room with a view, nonetheless. In less than 24 hours, I’ll have toxic chemicals dumped into a special IV line called a “pick line” which will attack the nastiness inside my bone marrow that threatens to take me out. We have some tests yet to run including another bone marrow draw, which I am eagerly awaiting, like having teeth pulled without Novocain. But that will give us what we need to know. Maybe then, it'll fully sink in and I can emotionally process this.  I know at some point it will hit me and I'll have the same shock as those I've broken the news to and come to terms with it all. For now, onward toward beating this thing!

Let the games begin!