The Next Chapter

It has been a long five months of treatment for my acute leukemia which has consisted of one really rough round of induction chemotherapy (one dose of toxic chemical goodness and three dances with the ‘red devil.' That was fun!), four rounds of intrathecal chemotherapy (directly into the spinal column. Yeah, that was fun, too!), and four rounds of consolidation chemotherapy (six doses of toxic chemical goodness over five days per round). That translates into 51 inpatient days of great good fun, but doesn’t include 41 blood tests (in addition to cross type and screenings for the 11 units of blood and 4 units of platelets – a.k.a. ‘the yellow goo’ I got), 4 bone marrow biopsies (3 of which hurt like hell), 4 uncomfortable PICC line installations, 4 blood cultures (one of which required an ultrasound just to find a vein to draw...that one hurt), 2 claustrophobia-inducing MRIs, two CT scans, a bone scan, a pulmonary screen, a couple of EKGs, a spinal tap, and who knows how many X-rays and a partridge in a pear tree ... and probably a bunch of other things I’ve forgotten or repressed! WHEW!

Since I've been advised to enjoy the sunshine
while I can, I'm being a tourist for a few days.

I’ve finally arrived in Seattle to begin the next chapter in this grand adventure called cancer which is the bone marrow transplant. It’s exhausting to tally up those numbers. I probably hit the low side on a couple of those stats, but who’s counting? Up to this point, the transplant has been off in the distance, something I’ve been eagerly anticipating and dreading at the same time. Without it, the leukemia will return and take me out of the game permanently, so foregoing the procedure really isn’t an option. With it, I’ll be rather sick as the powerful chemo will knock down my immune system to nothing so that the transplanted stem cells can engraft to my marrow and kill off any remaining cancer cells. It’s a big deal. Suffice it to say, I have been working through a lot of anxiety over this…and I’m also finding that I’ve, once again, worked myself into a frenzy where I may be overdoing it. And then again, maybe not.

You see, there are different levels and types of transplants.  First, there is the autologous transplant where the patient’s own stem cells are harvested and then once the immune system is knocked down, they are re-infused and will restore things. Then there is the allogeneic transplant where a donor’s cells are infused.  Within this second and more common type, there are two kinds: myeloablative and nonmyeloablative (or mini-transplant). The mini-transplant, as you might imagine by the name is less arduous, but the end result is the same: I’ll be getting a new immune system and life as I know it will change pretty substantially.  There really is a “new normal.”

Since arriving on July 25, I’ve been undergoing a lot of the same tests I had the first couple of days after I was diagnosed. We’re setting a new baseline here and from these results, the doctors will review my case and decide what kind of transplant I’ll be undergoing.  There are plusses and minuses to both full and mini-transplants. The full transplant actually takes less time here, but will be considerably rougher to navigate as there will be about three weeks of intense inpatient chemo and radiation. Meanwhile, the mini will be almost exclusively outpatient, but the average stay in Seattle is about six months instead of four for the full. It also demands more responsibility on my and my caregivers’ parts.

So far, I’ve had a new EKG, a dental exam, a blood draw, a pulmonary function test, a visit with the ophthalmologist, a consult with the pharmacy team where I was introduced to the mother of all pill boxes to keep track of everything, and a chest x-ray for good measure. My favorite was a trip down to nuclear medicine where a small vial of my blood was mixed with something so radioactive that the technician had the mixture inside a lead-lined container and resulting in this conversation (not making it up)

Tehcnician: "You don't plan on leaving the country this weekend, do you?"
Me: "I was thinking about going up to BC and seeing Vancouver, but probably not this weekend."
Technician: "OK, well if you do decide to go, let us know so we can get you a letter. You will set off the Geiger counters at the border and at the airport."
Me: (unscrews face that would say, "Really?")

My next consult was with someone who had thyroid uptake tests and got a card to let people know she was radioactive. What a glowing report I got!  I also got to chat with the psychologist who didn’t even ask embarrassing questions that would make Sigmund Freud proud. I got to keep my PICC line instead of having a semi-surgical procedure to get a Hickman port installed. That was great news since it’s one less painful thing I have to undergo.  I found the reasoning had to do with the fact an autologous transplant ain't in the cards for me.  I met my new über-nurse who, after many years in Seattle, has yet to lose her Brooklyn accent. I can tell already that the nursing staff and I will get along just fine! The two ladies at the reception desk are sharp as tacks and I know they’ll also take good care of me, even if they never wield a needle…they wield a phone and a pen just fine. Tomorrow I meet the transplant coordinator and one of the doctors, so I can start peppering people with questions…and getting answers that will be either really scary or make me want to do the happy dance.

In the meantime, I’ve met a number of fellow transplant patients and their caregivers. My son, Austin, has also making friends and comparing notes while I’m in compromising positions with the doctors, nurses, and technicians. All but two of the people I’ve met so far are undergoing the mini-transplants; the other two are doing autos. No one I’ve met so far is doing a full transplant.  The psychologist told me this morning that I’m right on the cusp both age-wise and physiologically to do either. She readily admitted though that she doesn’t make that decision, so we’ll find out when the doctors meet to discuss my case, which should be in the next 1-3 weeks.  In the meantime, I was told to enjoy Seattle and make the most of the sun…the sun will be my mortal enemy after I get the transplant. I’m feeling more like I will be a vampire when this is all said and done! So, I’ve been staring longingly at my cargo shorts and polo shirt. While not a thing of the past, I may be taking out stock in sun block or at least buying it in bulk at Costco year-round.

All in all, I’m feeling both encouraged and intimidated as there’s give and take on this next chapter of my treatment. But there’s still a lot left to find out. We have a lot to learn, a lot to discuss, and a lot for which to be tremendously grateful.

Thanks for hanging with me…it means a whole lot, especially as I’m now out of pocket in an extended stay hotel for the next few months. If you’re up in the Seattle area, please do look me up. I’ll leave the light on for you, even if I’m not in a Motel 6.

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

Music for today – Everybody Hurts by R.E.M.

 

 

When the day is long and the night
The night is yours alone
When you're sure you've had enough
Of this life, well hang on

 

Don't let yourself go, 'cause everybody cries
And everybody hurts sometimes

 

Sometimes everything is wrong
Now it's time to sing along
When your day is night alone
(Hold on, hold on)
If you feel like letting go
(Hold on)When you think you've had too much
Of this life, well hang on

'Cause everybody hurts take comfort in your friends
Everybody hurts

Don't throw your hand oh, no don't throw your hand
If you feel like you're alone, no, no, no, you are not alone

 

If you're on your own in this life
The days and nights are long
When you think you've had too much
Of this life to hang on

Well, everybody hurts sometimes, everybody cries
And everybody hurts sometimes

 

And everybody hurts sometimes so, hold on, hold on
Hold on, hold on, hold on, hold on, hold on, hold on
Everybody hurts
No, no, no, no, you are not alone

Dude, We Be Trippin

Most Monday mornings start with an alarm clock and a commute. My Mondays for the past several months have involved a blood test at the Salt Lake City VA Hospital and physical therapy to recover from a particularly rough round of chemotherapy and to prepare what promised to be a particularly rough treatment regimen in Seattle. Suffice it to say, when the call from the Seattle VA Hospital came to let me know I had a bone marrow donor, I had a flood of mixed emotions. I was relieved that my wait was over, yet the actual treatment would be a tough one. I had been told by a number of people that the bone marrow transplant process was nothing short of a pharmacological miracle. It would take me to death’s door at which time the donor stem cells would be infused and bring me back from the brink. I was elated to get this second lease on life, but I wasn’t so stoked to be getting gravely ill.


My oldest son flew out to Salt Lake Saturday to drive up with me, so we made a regular road trip out of it, replete with junk food, jokes, and a touch of kitsch. It was good to catch up and get to know him a bit better during the drive. My younger son will be flying directly to Seattle next week and the three of us will use the next four months to make up for lost time and have some fun in the middle of what is otherwise a less-than-fun medication staycation.

Our first day on the road was spent crossing the Great Basin – the dramatic stark landscape of Western Utah and most of Nevada. We finished the day driving past Lake Tahoe and over Donner Pass. It was an amazing juxtaposition and reminded me of acquaintances I once knew who typically made dinner reservations under the name “Donner Party” <insert groan here>. The mountains were absolutely beautiful, but it became obvious just how arduous it must have been for 19^th century pioneers to cross over the Sierra Nevadas. Spending the night in the Sacramento area, we visited some friends and when we made it back to the hotel, we crashed thoroughly.

My son, Austin, near Shasta, CA.

Leaving Sacramento, we headed northward toward the Redwood Forest, driving through more mountains, arriving at the coast early in the afternoon. Having lived in the south part of the state, the coastline was strikingly different. The fog hanging over the ocean cliffs made for evocative pictures and it was considerably colder than the previous day’s drive. Crossing the Great Basin, we saw 100° to 105° most of the day, but on the coast, it dropped down to nearly 50°. Break out that jacket and turn on the heat in the car!

 

It's tremendously hard to capture just how big these redwoods are.  If you look at the right side of the downed tree, you can see my son for a size comparison.  These trees are just immense!

We arrived at Redwood Forest National Park about 4:00 and drove through the southern part of the park near the coast. I don’t think any picture can really do justice to the sheer magnitude of these immense trees! I took a few photos with my son in the picture to emphasize how big the trunks are, but looking up, they disappear into the overcast mist and with the forest so eerily silent, it may as well be a scene right out of Jack and the Beanstalk. The drive out of the forest reminded me of scenes from Snow Falling on Cedars. It’s no wonder that the area has brought forth so much out of the fertile imaginations of writers and artists. We ended the day in Eugene, Oregon. We both realized as we turned it that it was the second day we were just so wrapped up in the day that we forgot to eat dinner…but we were both very full.



A few sea lions inside the cave. This is usually an epic King of the Hill battle.

The final day of our road trip took us to Florence, Oregon, a small coastal town that is home to a sea cave that draws sea lions by the hundreds each year during their breeding season. My dad, who is normally pretty stoic when it comes to being a tourist, said that this was one of the places where he was glad he went.  Florence is about 90 minutes from Eugene, so we jogged back over to the coast and found the place. The visitor entrance sits on the coastal highway on a cliff nearly 300 feet above the water.  The scenery, once again, was breathtaking. Standing on the observation about 200 feet above the water, the rocky shelf below must have had nearly 100 sea lions bathing in the sun and making sounds that my son tried to imitate with every belch! His girlfriend is as impressed as his dear ol’ dad. A 200-foot elevator ride took us down into the cave itself.  We were able to get within about 75 feet of a few sea lions that had actually come into the cave, but most of them stayed outside.

Driving down the road, this vista demanded we stop and take a pic. This is just south of Florence, OR.

From there, we hit the road northward again. Austin had originally wanted to visit a couple of places in Portland, but he couldn’t find a specific address, so we’ll have to do that on an upcoming weekend.  Once we crossed the Colombia River, we started to see volcanic mountains off in the distance.  Mt Saint Helens was a figure that held some mystique and I was amazed just how big it seemed from the highway.  I had no idea it was so close to Seattle. That, also, will be a weekend excursion, to be sure.

Arriving in Seattle, it felt nice to see the end of the trip in sight…yet, in reality, it’s just the beginning of the next leg in a larger journey.

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

Today’s music is an instrumental – End of the Road by Umphrey’s McGee

 

Drill, Baby, Drill!

Three times a week since I’ve been cut loose from the VA Hospital, my blood counts and chemistry have been monitored very closely. I’m now intimately familiar with WBC, RBC, HGB, HCT, PLT, ANC, and some other fun medical terms and drugs that I wish I didn’t know anything about. Since I have a central catheter (PICC) installed, getting a blood draw or an infusion of chemo, blood, or platelets are essentially painless procedures. They’re just time consuming. That became more of an issue as the weather got warmer and I became restless with being confined to the hospital. I got more of a case of cabin fever than anything else!

With a 28-day chemo cycle, my body's response was pretty predictable. That was the drill.

And then the call from Seattle came telling me that a bone marrow donor had been found and the routine changed. To be prepared for this new chapter, a bone marrow biopsy was required to ensure that I’m still in remission. I’ve had a lot of procedures, tests, pokes, and prods since this all began and honestly it hasn’t been bad.  More often than not, it’s a series of inconvenient truths that landed me in a hospital room and only when it became a cumulative thing did it really become what I would call bad. I would get something that, on a scale of 1 to 10, was a nominal 1 or 2, but when added to other 1s or 2s, it got worse and at some point, the group of small things overflowed and I would have my own personal meltdown.  A blood draw is not fun, but it’s barely a 1.  A headache is a 1.  Getting a PICC line installed is a solid 3, but those are really minor in the grand scheme of things because they pass rather quickly.  And let’s face it, a headache passes within 20 or 30 minutes after taking a pain reliever, so you can see that it hasn’t been too terribly onerous.

But there is one procedure I’ve had to undergo that has actually been pretty durned painful – the bone marrow biopsy.  There’s no getting around it – it hurts like a bear and makes you want to cuss like a sailor, but there’s no other way to test the marrow for cancer, so it’s a necessary thing.  Let me tell you how that works. The only way to get to the marrow is to get through the bone, of course. The site of choice is the pelvis and it’s closest to the skin in the small of the back.  If you reach behind you just above the waist line of your pants about 3” to either side of your spine, you’ll feel that special place where all the magic happens.

The nurse with that great combination of a smile and sympathetic look will introduce herself and bring in a cart full of goodies that would make Santa jealous. Then comes the doctor, replete with euphemisms and a packet covered in sterile white plastic with implements of torture that would make Torquemada jealous.  Remember, no one plans for the Spanish Inquisition, but they do schedule you for biopsies! This was my fourth…I know the drill, pun intended. The smiling doctor and the sympathetic smiling nurse then explain the procedure in a way that would sound no more unpleasant than a telemarketer calling during dinner (aka ‘pain in the ass’). Oh, the lies…they’re good at it with all the practice…and they smile all the while! I remember seeing a guy across the hall getting the briefing about a biopsy and I wanted to shout out to him, “It’s gonna hurt, get the drugs!” But the nurse closed the door. I never saw him again (insert frowny face here). Sure, it was because his procedure was done before mine and I was given some oral drugs for my chemo in my spinal cord, but we’re splitting hairs here!

Since this was my fourth biopsy, I asked the good doctor to spare me the euphemisms and move straight to me signing the release. I smiled and was polite about it of course.  I am a decent and polite guy, if not sporting a lively sense of humor with a touch of brashness at times, but hey, I know Santa Claus isn’t real and I know this is gonna hurt...bad.

Let the games begin!

So, I take my shoes off and hike my shorts down a bit and the good doctor starts to give me a sterilizing sponge bath on my back side. Isopropyl 2013? Open that puppy and let’s have a whiff of that lovely cork! Lovely bouquet with oaky undertones. Whine spectator gives it a 91! How many of you can say you’ve had that one, hmmm? It’s nothing special—it’s cold and you know you’ll have a questionable stain later. Yeah, it’s from the iodine, but people are just so suspicious! Alas, I digress.

Let the euphemisms flow effortlessly off the tongue!

“So, here’s that little bee sting” (translation – I’m giving you a shot to numb your back side so I can really hurt you). So, I feel the needle and the lidocaine expanding under my skin. My heart races a bit because I know what’s next.  At this point, she makes a small incision down to my pelvis, which I don’t really feel too much, but there’s some "pressure."  She tells me she’s numbing the bone, which I think is not something that is really possible, but it sounds good, doesn’t it? At this point, things take an ugly turn and I’m having flashbacks to Westerns where they give the cowboy with an imbedded bullet that needs to come out; and our unfortunate hero needs something to chew on.  In my case, I buried my face into the pillow and tried to grab on to something. For a lovely petite Asian gal, the doctor can wield an auger! I’ll be her forearms are shredded! Those white coats hide a lot, I’m sure. She takes a hand drill and pushes it into my pelvis and damn, it hurts.



For a petite lady, she sure could put some serious power behind that auger.  "And now, you'll feel some pressure."  Ya think? So, she drills through the pelvis and gets into the marrow. Where's that leather strap to chew on when you really need it?

Drill, baby, drill!

Once the drill has gone into the inside of the bone, she withdraws the bone core and draws out the marrow. Sucking that out also hurts like hell. She then withdraws the auger and puts a rather large Band-Aid on the wound and I’m done. She has me lay on my back for about half an hour and then I walk away. It takes all of about 15 minutes start to finish and I’m left with a dull throb.  My pain level spiked at a solid 6 or 7, but now as I walk out, it’s barely a 1…and I’m feeling a bit shaky. The nurse with the sympathetic look? Well, she's really looking the part now and the doctor has said, "sorry" about 8 times. She knows she hurt me.

You can see the doctor pulling out the aspirate marrow.  Lovely, huh?

I have a pretty high threshold of pain and I realize this is something I need to have done since AML is a disorder focusing on marrow and I of course, am getting a marrow transplant, but there has to be a way to alleviate the pain more than popping a couple of pills.  It’s not important that I’m awake for the procedure even. Alas I digress once again and I am not, by nature, a complainer or whiner and I don’t even take aspirin unless I have a helluva headache…but come on! I have a PICC line in my arm.  Would it hurt to put something to take the edge off in that little line?

Ah well, what doesn’t kill you makes you stronger, right? I guess I should be getting pretty strong.

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

Today's music - Broken by Lifehouse

 

The broken clock is a comfort
It helps me sleep tonight
Maybe it can start tomorrow
From stealing all my time

And I am here still waiting
Though I still have my doubts
I am damaged at best
Like you've already figured out

I'm falling apart
I'm barley breathing
With a broken heart
That's still beating

In the pain
There is healing
In your name
I find meaning

So I'm holding on
I'm holding on
I'm holding on
I'm barely holding on to you

The broken locks were a warning
You got inside my head
I tried my best to be guarded
I'm an open book instead

And I still see your reflection
Inside of my eyes
That are looking for purpose
They're still looking for life

I'm falling apart
I'm barely breathing
With a broken heart
That's still beating

In the pain(In the pain)
Is there healing?
In your name(In your name)
I find meaning

So I'm holding on(I'm still holding)
I'm holding on(I'm still holding)
I'm holding on(I'm still holding)
I'm barely holding on to you

I'm hanging on another day
Just to see what you will throw my way
And I'm hanging on to the words you say
You said that I will be okay

Broken lights on the freeway
Left me here alone
I may have lost my way now
I haven't forgotten my way home

I'm falling apart
I'm barely breathing
With a broken heart
That's still beating

In the pain(In the pain)
There is healing
In your name(In your name)
I find meaning

So I'm holding on(I'm still holding)
I'm holding on(I'm still holding)
I'm holding on(I'm still holding)
I'm barely holding on to you

I'm holding on(I'm still holding)
I'm holding on(I'm still holding)
I'm holding on(I'm still holding)
I'm barely holding on to you

 

Heroic

Being a frequent flier of the Veterans’ Hospital, I have come across a great many men who have been to the edge of hell and back. Some bear scars on the outside, but just as many still nurse wounds inflicted on the inside. Some things just can’t be unseen, some things just can’t be undone, and some experiences just too unimaginably traumatic to be dulled by the passing years. Ball caps, decorated with bright embroidery cover the receding hairlines of gray and shade the eyes that once saw the unthinkable. Makes me wonder if Danté was a vet!

The eyes I’m seeing more frequently are getting brighter and the hair is far from gray, but the wounds are just as traumatic. One such young wounded veteran and I became friends after crossing paths at the hospital a number of times and sharing a lot of time together connected to our respective dancing partners – that would be our own IV poles—at the ‘other’ club med. When he told me the story of how he lost his legs in Iraq, the only thing that came to my mind was that I had met “the real deal,” replete with medals and a story of saved lives under fire. Yet in talking with him, he refuses to be labeled a hero. His attitude is simply that he couldn’t live with himself had he not done what he was trained to do. He harbors no bitter feelings and doesn’t feel like the world somehow owes him.

My friend, Isaac. He has a fancier IV pole that I do, but trust me, I'm not at all jealous!  He's getting a cocktail of all kinds of things post-surgery.  I'm getting another dose of toxic chemical goodness (aka chemo). He and his very beautiful wife are keeping me company. His scar looks amazingly like the Continental Divide. Yeah, aside from war stories, that's what we share -- we compare scars! He wins that one...I have no fancy scars to show off except that my arms make me look like a drug addict and my one time PICC line sites. Move on, nothing to see here, folks!  

My look of incredulity wasn’t the first he has dealt with. People see him in his wheel chair or on his prostheses and want to connect with a bona fide hero, but he’s not interested in being the center of that kind of attention. It struck me that he just wants what I want: to be treated as normal and enjoy the same life as everyone else and while we can’t get away from that thing that brought us together in the hospital, neither do we want to be owned or defined by it. I think the best way to put it is that there’s simply a profound sense of patriotism that frowns on the bumper stickers, but sticks to what’s genuine.

I don’t mean to paint the kind of picture where there’s some sort of “Aw, shucks, ma’am. I was just doin’ muh job” kind of exchange, but in a real sense, it’s just what we do and who we are. Professions where those routinely putting their lives on the line like police officers and firefighters are very much the same. They accomplish the heroic on a daily basis, they incur the same kinds of external and internal traumatic injuries, and they most certainly deserve the same respect as our returning armed forces veterans.

Translation:  Courage isn't falling, but getting up each time you fall. 
I put up the French version since it's Bastille Day

But there are other kinds of heroic acts where any one of us ordinary people rise to the occasion and do something that impacts or saves someone else’s life. We read about these people in the paper or on our social media outlet of choice that restore our faith in humanity - that our world isn’t full of inept or downright corrupt politicians, selfish and willfully ignorant followers of demagogues, or powerful people who wield their influence only to increase their wealth. What those heroic acts consist of are pretty subjective of course, but for the person who is on the receiving end, it means everything and sometimes it means a saved life.

It’s that kind of heroism that is quite literally saving my own life.  Earlier this week, I received a call from the Veterans’ Administration Health Care System in Seattle. The nurse on the other end of the line informed me that a bone marrow donor had been identified and that I would begin the next phase of treatment for my leukemia on July 25. The waiting is over…for now. The first two weeks will be for evaluation. At the end of these two weeks, I’ll find out what kind of transplant I’ll be undergoing as that hasn’t been decided yet. That much, at least, is news to me. At that point, the really ugly preparation begins and my immune-reboot process begins in earnest. It’s an exciting prospect of course, but it also rendered me officially freaked out. Things have become very real in short order.

Regardless of the machinations going on inside my own brain, some young man who will be unknown to me for at least a year, has done one of these heroic deeds. His decision to donate his stem cells will give me a second life. That sounds so very simple and perhaps a touch hyperbolic; and while it’s difficult for me to think about it in those terms, it’s unquestionably true.

I think the really difficult part for me to wrap my head around is that I’ve never had any outward symptoms to where I could point my finger.  All the things the hem/onc doctors asked me about were never part of my experience.  I felt like a million bucks one day and was quite literally on my way to the gym – bag packed – and the next thing I knew I was being poked, prodded, and tested ad nauseam in a hospital bed. After months of lab tests which, to me, are nothing more than numbers on a page, I’m going to be taken to the brink of death and an anonymous hero is swooping in at the last possible minute and giving me an infusion of his blood and I will rise from the (near) dead and be restored.  Comic book aficionados or people with a spiritual background probably see a number of parallels there and to be sure, they’re not lost on me. The whole process is nothing short of a pharmacological miracle, really!

So, to my unnamed donor (as of today anyway), my deepest and most sincere thanks for you doing something heroic, even though you may not see it as such.  May you receive in return, many times over, the good will and kindness you have extended to me…and may you never know the need of a stem cell infusion in your own life. And of course, may that life be long, fruitful, and filled with much joy.

To the rest of my support network – both near and far – thank you for hanging with me for what has been a rather long trip.  We have another four months or so to go, some of which may get pretty rough. I’ll need you more than ever during that time. Stay tuned…and of course, you all need to be well and stay strong where I may have some challenges there and know that you are loved very much!

Today’s music: Hero by Chad Kroeger featuring Josey Scott

I am so high, I can hear heaven
I am so high, I can hear heaven
Oh, but heaven, no heaven don't hear me

And they say that a hero can save us
I'm not gonna stand here and wait
And I'll hold on to the wings of the eagles
Watch as we all fly away

Someone told me that love would all save us
But how can that be? Look what love gave us
A world full of killing and blood spilling
That world never came

And they say that a hero can save us
I'm not gonna stand here and wait
And I'll hold on to the wings of the eagles
Watch as we all fly away, oh

Now that the world isn't ending, it's love that I'm sending to you
It isn't the love of a hero and that's why I fear it won't do

And they say that a hero can save us
I'm not gonna stand here and wait
I'll hold on to the wings of the eagles
Watch as we all fly away
And they're watching us, they're watching us
As we all fly away
And they're watching us, they're watching us
As we all fly away
And they're watching us, they're watching us
As we all fly away, whoa

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

A 1 AN A 2

A friend of mine – incidentally, my daughter’s father in-law – is on the tail end of his dance with acute leukemia. He sees, that despite leukemia being a really bad actor, that the experience with it was a dance of sorts. Make no mistake, the dance with leukemia is still the very much a dance with death, but like so many other dances on life’s card, there are some numbers you just don’t get to sit out. It took some time for me to warm up to that metaphor being in the middle of my own battle, but I get it. So, as for me right now? Well, I’m the guy you feel sorry for out on the dance floor, unable to quite figure out which foot goes where, but I will make the most of that performance and try to smile through it, nonetheless. After a while, I might even figure it out and occasionally, I actually look like I belong. The key is getting out and dancing, even when it feels awkward, tiresome, or downright silly. 

After many stumbles, I’m catching on to this little number called cancer, but if it’s all the same to the viewers of American Bandstand (yeah, I'm really dating myself there, huh?), I’d really like to try something else…something with a beat and easy to dance to!

The night the Titanic hit the iceberg, people were dancing. Some were dressed in their finery and others in their workaday clothing; some danced a waltz and others a folk dance. Style didn’t matter. Everyone came together to celebrate life in their way. They were told that this huge ‘unsinkable’ ship couldn’t be taken down. It’s fair to say that even though the ship had struck the iceberg, a good number of people continued to dance, oblivious to the fact that the compartmentalized design of the ship wouldn’t be enough to save it. As the ship listed and its crew started abandon ship procedures, things became real and the music stopped. Some of the people would obviously never dance again and the survivors would find their steps tragically altered.

Yet, they would have to find a way to keep dancing.

In a very real way, a cancer diagnosis is hitting that iceberg. It doesn’t just crunch in the bow of the ship, it rips open the side and unless some serious damage control takes place, the ship is going down mighty fast. For me, every day has been an exercise in damage control and thankfully, most of those days are pretty manageable. I have been so grateful for a wide network of friends and family, that I haven't really experienced a lot of pain or felt sick. Most of the side effects from the meds I do take are either offset by other meds or I can chalk it up to being relatively young, in decent physical shape, and genetics. Even the inconvenience of having to spend quite a bit of time around hospitals and doctors is bearable, albeit rather tedious after a while. I can pretty easily compartmentalize these things.

After a few chemo cycles, I know how my body reacts to the drugs and on what days in that cycle where I need to take extra precautions. I’ve learned to ‘listen’ to my body so I can be productive or when I need to back off. Sometimes that means that I’m up in the middle of the night working through problems and sleeping in the middle of the afternoon. Cancer doesn’t work on a time table and quite clearly, neither do I for a while. That can be pretty inconvenient for a social life or scheduling meetings, but it is reality. And it’s a good exercise for the ‘new normal,’ because up to this point, I played by the rules the Navy taught me: compartmentalize! Before cancer, I just pushed through pain or ignored the discomfort. I always got through it, whatever it was. Suffice it to say, leukemia is not something I can just put in a box and push through.

The difficult part is when a number of these small things happen in tandem or at the same time. It is then that inconveniences, procedures, or pains that would normally only register a 1 on a scale of 1 to 10 start to add up and then these otherwise inconsequential things grow from a manageable hole in the bulkhead into a gash that floods several compartments and the dance starts to look more like a seizure or fit as my figurative ship starts to go down. Having people to help right the ship and get me back to my feet has been crucial and of course, while that doesn’t translate into me sinking, boy can my stern drag!

During my first hospitalization, I felt that way a number of times, but as this adventure has progressed, I don’t find myself in extremis very often. That bulkhead keeping out the big ol’, bad ol’ icy cancerous waters seems to have been reinforced, boosting my threshold of pain a bit,. It doesn’t equate to meltdown moments being a thing of the past, just fewer and farther between. The dancing may look a bit better, but there’s still a lot of activity below decks to keep the ship afloat.



Lawrence Welk and one of the first
vanity plates from way back when!

Sure, I ponder whether this ship that I’m driving is going to make it to port some days, but this isn’t the movie, it’s life. That port is the cure and there’s another iceberg field between here and there called a bone marrow transplant that I have to navigate. I’m counting on successfully avoiding any more holes or gashes in the side of the ship, but the harsh reality is that it’s going to be a tough, if not outright perilous, journey between here and the cure and it’s going to take some time. In the end, learning to dance on a rolling ship that takes on water from time to time, will put me in a position to help someone else gather up their courage to step out on the floor, and with more grace than me, dance among the stars.

Cue the music, Mr. Welk … a one an’ a two … or maybe Vega4 and Life is Beautiful instead.

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

Life is beautiful
We love until we die
When you run into my arms
We steal a perfect moment
Let the monsters see you smile
Let them see you smiling
Do I hold you too tightly?
When will the hurt kick in?

Life is beautiful
But it's complicated, we barely make it
We don't need to understand
There are miracles, miracles

Yeah, life is beautiful
Our hearts, they beat and breakWhen you run away from harm
Will you run back into my arms
Like you did when you were young?
Will you come back to me?
I will hold you tightly
When the hurting kicks in

Life is beautiful
But it's complicated, we barely make it
We don't need to understand
There are miracles, miracles

Stand where you are
We let all these moments pass us by

It's amazing where I'm standing
There's a lot that we can give
It's just ours just for a moment
There's a lot that we can give
It's amazing where I'm standing
There's a lot that we can give
It's just ours just for a moment
There's a lot that we can give