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

 

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

Give a Little Bit

I’m finding myself really weepy lately.  It doesn’t take much to get me teary eyed these days. I can say pretty confidently that it’s not from being sad or depressed, but more often than not , it's just being really appreciative, grateful, or that I perhaps I'm just feeling things I wouldn’t under ‘normal’ circumstances. In picking out a song for these little missives, I can usually tell if it’s the right one as I get that familiar choked up feeling and so begins my inspiration for the day, but not always. My inspiration, today, is not so much the song, although it fits. It’s the video that accompanied it. I saw it posted to Facebook a few months ago and it got me then as much as it does now. It’s the message that was paired with the song that hit home and it’s one of the few times an advertisement got it right.

The song itself is Supertramp’s Give a Little Bit (the link at the left is to a video for the whole song). The video is Coke’s Super Bowl ad and it captures the best in us in a very short time … as captured by security cameras.

The thing that brought it to mind today was a conversation I had with my two sons yesterday.  My oldest son had a birthday a couple of weeks ago.  He turned 23 and is coming of age in a way that brought back a lot of memories for me as we had a really good conversation over the phone on the day after he celebrated his birthday. 

This is the day I brought my son home.

He has arranged to come out to Seattle to be my official caregiver while I’m undergoing my bone marrow transplant.  He’ll be seeing the best and worst of me and we’ll be having more of those good conversations, I’m sure.  We’ll also be making plans to do some wild and crazy things before he settles down (do any of us really ever settle down? Well, some of don't!) He’s not just giving a little bit; he’s really giving a lot to be with me during this time. That’s who he has always been. He is the quintessential strong and silent type, although when he gets talking, it’s debatable...and he's generous to a fault!


He's now 6'-3" and running (half marathon
here). You'd never know he has worked
through open heart surgery ... twice!

One of the things he talked about was spending time with his younger brother who is finishing up his first year of college. Both boys…uh…young men are asking a lot of questions and we’ve found a way for the two to be together: they can both come to Seattle. Yesterday afternoon, we were all able to get on the phone at the same time and talk through the details and it looks like it’s a go. So, it’ll be all the boys together this summer during my treatment and convalescence and this way, everything won't fall on to my oldest son even though there will be others coming over the course of the summer. We’ll all be giving a little bit to each other as we’re all navigating the next stage of our lives.  We all need what each other has and it proves that no matter how big, old, or tall the cubs get, the papa bear will always need to do papa bear things … and I’m really looking forward to having my cubs around … although admittedly the circumstances could be better!



My two sons last summer.

I had breakfast with my dad this morning, the first time I have eaten out since my adventure in toxic chemical goodness began nearly two months ago. In his way, he was giving his ‘little bit’ to me and I commented to him again how so many people had given their little bit to make this ordeal less intense. If little things bring me to tears of gratitude and joy, you can imagine how often the waterworks have been active these past couple of months with so many doing their own little bit,.

When I think about it, this really isn’t a stop-and-smell-the-roses sort of appreciation. The roses have always been there and I really am one to take in those kinds of things, but rather this is a stop-and-appreciate-the-thorns thing. And you can’t overlook the petals that have fallen to the ground or the earth itself and the bees and … and so on. It’s an appreciation of all the little bits.

Another of those little bits happened during my blood transfusion on Wednesday. I noticed that when the nurse that attended me arrived, he was wearing the same cycling jacket as I do, so we talked bicycles most of the day and he told me where I could ride as well as recommending a bike shop he trusted. He's more of a triathlete than a cyclist, but since he qualified for the Boston marathon, he's clearly an awesome athlete and he may just be running the big marathon on Monday. If I don’t see him when I go in for my last stab-me-in-the-back chemo, I’ll know why. A few of the medical staff are veterans, but not many.  He happened to be one, so we could swap stories about our time on active duty as well. On the down side, he was unable to find a vein that hadn’t been reduced to nothing as a result of my chemo. He and one other nurse turned me into a voodoo doll, so my arms are looking getting track marks and bruised as a result (yeah! fun!). I can be appreciative for the folks in the lab who seem to find the elusive place to draw blood and do it amazingly without hurting me.  I can’t figure out how that needle goes in and I don’t feel pain, but the lab folks do it. Whoda thunk the prick of a needle would be something to be grateful for? Believe it!

One last little bit: my new friend with the fun t-shirts was an inpatient this week while I was getting my transfusion and we got to swap more stories and chat since I was the inpatient last time and he stopped by my room. I didn’t recognize him at first as he was wearing the hospital jammies instead of his jeans with the oversized belt buckle and the obnoxious t-shirt that makes you chuckle. But once he spoke, I knew it was him and we were already on the way to keeping each other smiling. 

I share a few of the mundane little things with you from my week because every little thing you do makes a difference to someone else – for good or ill. An encouraging word, a hug, a phone call, a joke, a smile to a stranger, doing your job well, whatever – all of these things make a difference even if you don’t see the end result. Can I encourage you to be that person for the one who needs a smile? I can tell you first-hand that it means the world...and if they need it like I have, it just may make them a little teary-eyed with joy.

Be well, stay strong, and much love to you all…and make someone else smile today! J

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

Why me? Why not me?

Cancer is no respecter of persons. It doesn’t discriminate against age, gender, race, or socioeconomic strata (unless you're a conspiracy theorist and then we can go to town!). We can certainly reduce our risks by behavioral things, but when I think about how I ended up on the business end of a leukemia diagnosis, I’m a bit flummoxed.  Here are a few statistics I’ve found from the National Cancer Institute, white guys like myself contract this fun-ness about 4.5 times in every 100,000 people, and of those of my age group (45-54), we’re about 11.8 of the whole. If I were to generalize, I’d say I’m a bit young, but obviously it’s not unusual. Looking at the details from there on are kinda sketchy because so many people who contract AML are typically much older and the body has a much more difficult time healing. The old ‘cure is worse than the disease’ applies here. The details from then on seem to be open to interpretation and I’m going to go with what my doctors are saying rather than interpolate what I think the statistics imply.

My daughter’s father in-law is an AML-survivor and from what I hear, is doing well. How nice to be on the downside of this! When I chatted with her on the phone today, she was still a little freaked out about the familial similarity, but of course, undaunted. I’m looking forward to seeing her soon. Who knows really what causes this thing? Is it a cosmic crap shoot?  Is it because of my aviation career where I absorbed an unhealthy amount and type of radiation? Who knows? And more to the point, does it matter?

I had a busy day of procedures and visitors and I’m now in the middle of an unwanted all-nighter with transfusions that require intensive, periodic interruptions from the nursing staff to make sure I’m not crashing. And yes, it would have made more sense to just do this tomorrow when nothing is happening here. The speed of medicine is often excruciating and precisely inconvenient, but my social plans have taken an unwitting back seat to the world of phosphate binders, antibiotics, and the rather specific unpleasant details of my latest bowel movement. So, I’m awake and with you tonight and I’m unpacking that, ‘Why me?’ question.

People who know me from any length of time know that I’m one of the first to throw a couple of ‘frog skins’ to someone for those fund-raiser events.  I’ve been a little more generous than I should at time, but I always thought karma would favor me in my own efforts, so when the AIDS walks, Multiple Sclerosis rides, diabetes races, and the Susan Komen (and other) cancer relays were out there, I just routinely contribute. I even have supported a high school classmate who has run marathons for the Team-in-Training to support the Leukemia-Lymphoma Society. (That one hit a little close to home as I thought back about all of this!)  He lost his father to a blood cancer years ago and through these events, met his partner in life. I, myself, have done some endurance events to raise funds for HIV/AIDS in both Minnesota and Southern California. Each time I participated, I got far more out of the experience than I put into it. I’m a staunch supporter of these kinds of events because they continue to keep the dialogue moving in areas we don’t like to talk about except around the water cooler. If you don’t say, “cancer,” it won’t happen, right? Except that it does. Believe it.

I’m also the same guy who donated blood over forty times, making me one of those “five-gallon” club members the Red Cross loves so much. Tonight I’m getting some of that interest transfused back into me, so I guess between the money, energy, and flesh I’ve invested over the years, the ‘what goes around comes around’ is coming back on me. I’m in decent physical shape, able to negotiate the black diamond slopes, physically adept on a bicycle, and working toward chiseling that middle-aged paunch away from my mid-section. I eat reasonably well, my alcohol intake is modest, and I don’t smoke.

So, again, why me? I'm not the guy that fits this demographic. You'd have thought I thoroughly dodged that bullet and we could by-pass the "why bad things happen to good people discussion."

And as much as I don’t want to be the one drinking this rather bitter cup, I have to say, “Why not me?” Because I have so much going for me aside from some rogue marrow, I have a better chance to beat the dire survivability that others may not have. The other thing I have going for me has nothing at all to do with my physiology and everything to do with you, dear readers. 

I had a very good friend drive all the way up from Southern California to be with me today and while I was getting a CT scan, visited another vet who didn’t have the luxury of someone to visit him. I don't have to question that I have people rooting for me. I have had the great good fortune to *know* without question that I am loved, that I am supported, that I have a crowd of supporters literally around the world.  The power of social media is surprising in its scope, but it also is another stark reminder that the same kind of thing I invested in these charity fund-raisers, I apparently invested in relationships to where I’m not just a “click” to someone on facebook. The flood of texts, emails, phone calls, gifts, well wishes, and on and on has been genuinely humbling and I can guarantee that while I couldn’t possibly return the sentiment individually in any reasonable time, I see every one of them and there will come a time when this is all said and done where I will have quite a long project ahead of me to repay the manifold kindnesses you have extended. This is going to be a long-haul, I know, so I appreciate the endurance in which many of you have already intimated.

I got the word late yesterday that one of the tests that indicated that the cancer would return and suggested I would need a bone marrow transplant came back positive.  I don’t have a time frame, but that means I’ll be flown to Seattle for the transplant.  I’m told Seattle is lovely in the summer and that I’ll not be stuck in a hospital room and actually get to see a bit of it as I’m feeling able.

Silver linings may not be the things I expect, but I’m watching for them at every turn…and I do see a lot of them. Any of you who spend any time in the social media wasteland will have come across this gem.  My high school classmate sent it to me and I remember seeing it back when it came out and crying then.  Now, I watch it every day and still cry because the resilience of the human spirit cannot be vanquished by cancer, but is rather often defined by how coming through it. My hope is that I'm able, with your help, to maintain a positive outlook and strength to keep fighting the good fight to put this all in the rear view mirror and to be able to pull someone else through the struggle.

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