Not Just A Little Sobering

After being in treatment for acute leukemia since February, I’ve come to realize that there is no real routine to speak of, especially since arriving in at the Puget Sound Veterans’ Health Care System. I can arrive on time at 8:00 a.m., get my blood drawn with all my compadrés, get my IVs running, and get my golden ticket to head back to the hotel only to see the MTU’s number in my caller ID. It could be as innocuous as letting me know about an appointment, changing my dosage on a medication, or having me come back in for something unforeseen. Any way you look at it, I’m on a short leash and it’s just part of the big picture of treatment. Some days a pain, some days a reassurance, but always something of which I have to be conscious…and there really are no days off, even if I don’t have an appointment at the big white building on Beacon Hill.

Med management is, as I’ve said before, an hour-to-hour undertaking and I’m my own best advocate when it comes to my healing. It means being brutally honest in how I’m feeling at the risk of sounding like a hypochondriac and asking a lot of questions.

This week has been a tough one with respect to the details as well as the big picture, but it started with what might otherwise be seen as routine. Because of my lungs, my attending physician has asked that I come in every day rather than Monday, Wednesdays, and Fridays (which, incidentally was reinstated as of this morning…see? Everything is always in a state of flux!). Outpatient rounds typically devolve into a quick social call where the entourage of medical folks ask how I’m doing, exchange a few details about the lab results from my blood draw with each other, perhaps adjust medication a bit, and move on to the next patient. It’s pleasant enough and they take all of five minutes, maybe ten if Austin or I have questions we’d like to discuss.

Wednesday was really…really different.

It was a conversation that hit me out of the blue about a topic I’d certainly mulled over in my mind, but that I was having said conversation with my attending physician, the head of the Bone Marrow Transplant Unit, took it out of the realm of academic and into the real.

Without preamble, he pointed out that my pulmonary function test from that morning didn’t show any improvement over the previous week, something I already knew. Where he went with that was not just a little sobering. He pointed out that with any intubation, the likelihood of being extubated successfully becomes smaller. He didn’t want to even offer up any statistics in that my survival from the previous two intubations was seen as pretty remarkable. In fact, he suggested that if I were required to go back on a ventilator, the possibility of me regaining consciousness would be unlikely.

This is me in the MICU on a ventilator for the second time. The machine is breathing for me and it was actually a terrifying experience for me in that any time I had to cough, a pulmonary technician had to "help" me and it felt like I was drowning. To communicate, I had an old school clipboard. I'm trying to be a bit funny to make the best of a very bad situation. I was in this contraption, catheterized, being fed intravenously, and really unable to do much of anything for almost a week. Yeah, it sucked, but it kept me alive.
 

How’s that for a conversation opener?

Who, in their right mind, would submit to that? I, already had two awful, PTSD-inducing experiences on the ventilator and to hear that submitting to a third time would most certainly end my life was a bit much. Now, bear in mind, that I’ve already come to terms that my time could come and in reality, I’ve lived a great, fulfilling life, but I’m not ready to cash in the chips yet! I’ve got too much yet to do and too many life experiences yet to live, so this is not something I want to hear. Who would? But I’m still in treatment and there are “TRM – Treatment Related Mortality” statistics for a reason.  People really do die because the treatment is rough, let me assure you, but I will survive, I will survi-i-ive (sing it with me!)

One of the entourage was the staff psychologist and we talked about this death thing in real terms. No, I’m not dying and yes, we’re all still fighting this lung crap with a vengeance. No one is giving up. I will say that I refuse to die in a hospital if at all possible and as much as I find my adopted home town of Seattle endearing and welcoming, my home is the cradle of the Wasatch Front in Salt Lake City and I’ve made arrangements with the University of Utah for the disposition of my remains to be used in training our next cadre of medical professionals as well as donating my organs. It just seems like the responsible thing to me.

I don’t need to tell you that the whole ordeal was a really tough one. I was a bit out of it for the rest of the day. I needed to decompress, but how? I shed a tear or twelve, talked it out with family both email and on the phone and had a barrage of questions for the doctor the next day.

I am pleased to say that the doctor clarified a few things. First, it was a conversation that should have happened after the first intubation, but just never did; Second it was a possibility, not a likelihood; and finally, he apologized for springing it on me the way he did.  Afterward, I felt like he was really trying to work with me rather than back me into some corner. I explained my position and we moved back to the pleasantries that we were used to. Bottom line: game on with the lungs. I can do this and we’re all on the same page once again.

So, we’re back to perpetual med dose changes, being inconvenienced by a short electronic leash, and the sound of IV pumps swishing away and making harsh electronic noises – all things that indicate the war on steroid-induced myopathy, lung malfunction, and leukemia continues in earnest. As tiring as that has become over that past several months, I again say, “Game on!

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

Today’s music is from Dan Fogelberg – Phoenix

I have cried too
I have cried too long
I have cried too
I have cried too long
No more sorrow
Got to carry on

Found deep water
Before I'd even learned to swim
Found deep water
Before I'd even learned to swim
Never thought I'd
See the sun again

Once I was a
Once I was a man alone
Once I was a
Once I was a man alone
Now I've found a
Heart to call my home

Like a phoenix
I have risen from the flames
Like a phoenix
I have risen from the flames
No more living
Someone else's dreams

I have cried too
I have cried too long
I have cried too
I have cried too long
No more sorrow
Got to carry on

You almost had me, old lady
You almost tied me down good
You played the lady in waiting
And I waited as long as I could

Too long the songs have been silent
Too long the strings have been still
I never knew what you wanted
And I guess that I never will

Like a phoenix
I have risen from the flames
Like a phoenix
I have risen from the flames
No more living
Someone else's dreams

I have cried too
I have cried too long
I have cried too
I have cried too long
No more sorrow
Got to carry on

Yeah, yeah, yeah
Yeah, yeah

Embrace the Suck

Just when you think you have broken the code, they change the rules! After five inpatient stays at the VA Hospital in Salt Lake City, I thought I had things figured out. There are certainly parts of being hospitalized that don’t change, but the level of things for the bone marrow transplant here at the Seattle VA are ratcheted up a few notches with respect to keeping things über-sterile.  I’m now well into the process of killing my immune system off to make way for the new one, courtesy of “Hans,” my mystery donor. This is Spring Cleaning taken to a whole new level!

And to take Spring Fever to a whole new level, I settled into the new digs in the room at the end of the hall of the Bone Marrow Transplant Unit (MTU).  It has a lovely view and I don’t even have to walk to the window to see where I’d really rather be. My son and I had a quick intro to some rules of the road from the night nurse and he was off…I was not. I’ll be here for 3-4 weeks while I get my chemo and the life-saving transplant.

With that in mind, I set out to start learning the new slate of names of the medical and support staff that make up the MTU and to be sure, I want them to remember me. In the time prior to being admitted, I found a souvenir shop downtown Seattle with a metal sign that was intended for a bar that read name your poison. Being one to be literal when it suits me, I bought the sign, wrote Busulfan on the sign, and hung it on my door. Keeping things light!  I have a few other smaller things for the upcoming days. I’m intent on keeping people smiling so that when I feel lousy, they'll get me smiling again.

With my sign on the left and my new fancy dancing partner flashing her toxic chemical goodness for all to see. I'll bet you're *so* jealous! ;-)

Late in the day yesterday, I thought we might be getting close to one of those points where I’d need a little help smiling. PICC lines have been the point of infusion and blood draws for the past six months, the most recent of which was installed about 2½ months ago. Sometimes, these catheters migrate a little and can be difficult to draw blood from.  Such was the case yesterday, so after some contortions to see if the we could get a blood return and half a dozen unsuccessful sticks into my skin (peripherals), I ended up having to get a new line installed. While it’s not as painful as a biopsy, neither is it painless. Essentially, a narrow tube about 16” long is routed through a vein in my arm up to a junction just above my heart near the superior vena cava. To get to a vein big enough to support that catheter, the nurse has to use an ultrasound and get rather deep into my arm. It’s semi-surgical. I stay awake for the whole thing and get a local injection of Lidocaine. When I found out I’d be getting a new PICC line installed, I was less than happy. This is actually my fifth. One of the nurses who had been trying (in vein?!)  to draw blood earlier was watching the procedure and was actually rather quick to offer me something for pain. I’m tired of hurting, so I accepted. I actually have developed a rather high threshold of pain, but after this long, I’m ready to adopt better life through chemistry as my motto until this odyssey is over.

This is a PICC catheter going in and yes, that's me. The keyboard to your left goes to an ultrasound machine that helps the nurse/IV technician find the best vein. Inside the central line catheter, there is a little metallic piece that is picked up by the gray yoke/magnetometer on my chest so the exact location can be determined. After he positions the PICC, I get an X-Ray to confirm it is in the right place and they put a sterile dressing on the insertion sight. You can see the line going in my arm through a small incision.

Thankfully, the pain passes in a day or so and I get back to my normal jovial self. Even my favorite Brooklyn-born nurse told me I that I looked good today. I’m feeling good…for now. I know everything could change on a dime, so I’m doing what I can to enjoy the moment – carpe momentum! – or something like that anyway. By the time the late afternoon arrived, it was just the two nurses and me – from a pretty noisy day to a quiet ward. Suffice it to say, with no other inpatients, the nurses and I struck up a good conversation until sleep finally caught me.  I don’t know if it was the pre-meds, nerves, or something I ate, but I was back to my old hospital habit of staring at the ceiling in the wee hours of the morning.  Last night though, I was out cold.

I started chemo yesterday morning at 0-dark 15. It had to be started with near military precision so that blood levels could be measured at prescribed intervals. That tells the pharmacist how to adjust the dosage – something called pharmacokinetics. Say that 3 times fast! Since it’s impossible to reverse, I’m strapping in and holding on for the rough ride ahead. The transplant itself is less than a week away…hard to imagine that in six days, I’ll begin the process of coming alive.  So many parallels could be drawn at this point, but I’ll hold back until I actually have the new stem cells coursing through my veins.

Certainly, there will be much to think about as my body starts succumbing to the toxic chemical goodness and I take a nose dive back into frailty. There will be a lot as well to build up on the recovery side. I took a tour of the all new Salt Lake City Public Safety Building just before I left for Seattle and I saw the particular members of the structure that made it capable of withstanding an earthquake. Much like that, I know that my own body will resemble that in a way. It may appear similar on the outside, but perhaps a bit different than I can conceive; and I know the rebuilding will be good as well as necessary and it will belie the inner strength that comes from a visit with death. You can’t not be changed when you stare death in the face, but neither should one be cavalier about it. The stakes are just too high and they are permanent. It’s gonna hurt and it’s gonna suck, but the cost of life doesn’t have a price tag. Time to embrace the pain; time to embrace the suck (see note below)

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

Music for the day from the Goo Goo Dolls - Better Days

And you ask me what I want this year
And I try to make this kind and clear
Just a chance that maybe we'll find better days
Cuz I don't need boxes wrapped in strings
And desire and love and empty things
Just a chance that maybe we'll find better days

So take these words
And sing out loud
Cuz everyone is forgiven now
Cuz tonight's the night the world begins again

And it's someplace simple where we could live
And something only you can give
And thats faith and trust and peace while we're alive
And the one poor child that saved this world
And there's 10 million more who probably could
If we all just stopped and said a prayer for them

So take these words
And sing out loud
Cuz everyone is forgiven now
Cuz tonight's the night the world begins again

I wish everyone was loved tonight
And somehow stop this endless fight
Just a chance that maybe we'll find better days

So take these words
And sing out loud
Cuz everyone is forgiven now
Cuz tonight's the night the world begins again
Cuz tonight's the night the world begins again

"Embrace the suck" is actually a military term meaning: the situation is bad, but deal with it.

 

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

 

Not Alone

I’ve known Jeff and Jane since we were back in the big hair days of high school together. Jeff was a swimmer and I gave competitive swimming a shot during my junior year. There were things I liked about it, but in the end, I didn’t have that level of athleticism. But because the solitary nature of competitive swimming pushes self-discipline to the front of one’s character, it carried me through collegiate level athletics where I was the manager for the Naval Academy’s swimming and water polo teams, experiences that cost me academically, but enriched me in other ways.  I may not have graduated with the best of grades, but the fact that I’m in great physical condition says it was time well spent and a discipline well worth fostering. It may very well have saved my life. Jeff was a classic swimmer guy – obviously very athletic, very quiet and to himself, and as I remember, pretty smart, too. Had I stuck with the team, I think we’d have been pretty decent friends and I’d have had a far less rebellious senior year!

Fast forward a few years to the first high school reunion I attended. It was a typical reunion where we’re sizing each other up and Jeff has a beautiful young lady on his arm – his high school sweetheart - who had somehow managed to maintain that twinkle in her eye and a genuine smile. Her cheerleader pedigree offset his brooding swimmer introversion, one that I still have, even if I don’t get to swim all that often anymore. I enjoy being around people, but I recharge my batteries in solitude. I’ve gravitated to physical activity that I can do alone or with others – hiking, cycling, and skiing, for example. Yeah, I’m a classic introvert, but you’d never know it by how I can walk into a room and talk up a storm with everyone. Just ask the nurses!

Fast forward another decade and I find myself looking at pictures of a strong young man who is following in his father’s footsteps, except that he has some added weight he's tugging through the water - he has cancer. I was amazed at how people came from out of the woodwork to actually give support and make donations. It’s the sort of thing that restores your faith in humanity amid the crazy polarization that politicians and talking heads keep trying to drive us toward. When I moved home to Utah about a year later, I was shocked to find out their son Stephen lost his battle. It would be only a few weeks later when I received my own diagnosis of another kind of blood cancer – leukemia – and receiving Jeff and Jane in my own hospital room.

The button kinda says it all. The night it was given to me,
I didn't fully appreciate just how true it was!

Jane, somehow managing to keep me smiling throughout the visit, put a button on the table next to my hospital bed. It read “No One Fights Alone.” Jeff and Jane were the tip of the iceberg. The outpouring of support I, myself received, overwhelmed me.  It stretched literally around the world and it took nothing for me to tear up with a kind of gratitude that I just couldn’t grasp. I think it embodies that thing we attempt to call unconditional love. People have just been there…because. And thankfully, many, many still are. How cool is that!

That night was almost four months ago.  It’s inconceivable that I’m still dealing with this, these months later, yet cancer is not something where you can take a course of antibiotics and get a check-up in a couple of weeks.  It takes several weeks to smack it down into remission and then there is the actual treatment to get it out permanently. It takes time, it takes patience, and it takes a whole lotta pharmacological fun! You ain't seen nausea and icki-ness until you've tried this stuff!

I’ve been really amazed and gratified in that I’m finding that I’m not alone in other places either.  It seems that everywhere I go anymore, there’s someone who is a cancer survivor or connected first-hand to one. In the middle of nowhere in particular, I’ll get instant best wishes and offers of support and people whom I met remember me. Walking through the Utah Arts Festival last weekend, it wasn’t the tell-tale cue ball head, but a mesh sheath around someone’s left arm that was the flag. I’d recognize a PICC line anywhere! In no time, we were comparing scars, the quality of the mesh sleeve material, and the kinds of lumens on the catheter. All I can say is that the VA has hooked me up! I have a really nice mesh sleeve that protects my PICC line, but she clearly won the scar competition, so it was a draw. I think she was still jealous!  We had a good laugh and it was nice to bring a smile to another cancer compadre!

Seriously...look at the fuzzy hair and the
salt-and-pepper goatee! Problem is
I sound more like Nicholas Cage. Not
quite the crooner am I?!

Of course, there are those ubiquitous bald heads we all know so well from the movies! You can tell which of us are bald thanks to the toxic chemical goodness and those of us who have a maternal grandfather who had similar follicular challenges and have chosen to rock the look. It’s like seeing the car you just bought everywhere you drive, when before, you may have noticed one or two. There are a lot of guys out there who are able to make themselves downright studly sans-cheveux.  *I* dear friends, am not one of those guys.  I’ve been told that I have an academic look about me with my school boy spectacles, so it’s not necessarily bad, but it’ll never come across as Vin Diesel. Actually, I got called an “Eastern egghead” in a thick French accent at a swanky café on La Place Clichy in Paris, so there must be some smarty-pants vibe I give off. Truth be told, it wasn’t such a swanky place and after taking a good look at myself in the mirror at the hospital as I was shaving the other day, I wasn't so academic looking, but I do think my doppelganger is Billy Joel - moi, sans talent! In the meantime, I’ve accumulated some different hats in addition to the ball caps I already had prior to my induction to the cancer hall of fame.

All kidding aside – well, most, but not all of it – the single lesson I’ve learned is that you don’t have to know everything and you don’t have to even know the questions. That’s because when the chips are down, you’ll be amazed at who comes forward to stand with you, to be on your side, to be the one to pick you up, and pat the dust off of your hospital jammies. You are not alone, but you have to be willing to accept the help offered to you. It restores your faith in humankind and it births within you a sense of gratitude that just can’t be fully grasped until you’ve eaten a little dust.

No, you’re not alone…and that button Jeff and Jane gave me that says, “No One Fights Alone” is in plain sight to remind me of that fact. It’ll stay there until I can pass it on to someone else who needs that reminder. Hopefully, he or she will get that reminder in the flesh from many of those like me who have walked a mile in their shoes already.

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

Music for the day: Not Alone from Red.

Slowly fading away, you're lost and so afraid
Where is the hope in a world so cold?
Looking for a distant light, someone who can save a life
You're living in fear that no one will hear your cry
Can you save me now?

I am with you, I will carry you through it all
I won't leave you, I will catch you
When you feel like letting go
'Cause you're not, you're not alone

Your heart is full of broken dreams, just a fading memory
And everything's gone but the pain carries on
Lost in the rain again, when will it ever end?
The arms of relief seem so out of reach
But I, but I am here

I am with you, I will carry you through it all
I won't leave you, I will catch you
When you feel like letting go
'Cause you're not, you're not alone

And I will be your hope when you feel like it's over
And I will pick you up when your whole world shatters
And when you're finally in my arms
Look up and see, love has a face

I am with you, I will carry you through it all
I won't leave you, I will catch you
When you feel like letting go
'Cause you're not, you're not alone

And I will be your hope, you're not alone
And I will pick you up
And I will be your hope
And I will be your hope

Slowly fading away, you're lost and so afraid
Where is the hope in a world so cold?

Fear Not

You’d have to be totally numbed to life to not have some fear about a cancer diagnosis.  Sure, every fiber of my machismo bristled at the thought that I was somehow infested with this thing that would try to take me out of the game on a permanent basis, but the real me – you know, the one who has feelings and kids and people who love me – that one was pretty damned scared. My military training was in full force in that I put on that brave face and tried to have it out with the doctor. Of course, if you’ve read anything that I wrote about that conversation, you know he pulled the trump card and won. That conversation went something like this:

   Me      I feel fine.  I don’t have any of the symptoms you listed.
   Doc     The pathologist was adamant that you have leukemia. You have 50% monoblast cells in your bone marrow. I want to admit you tonight.  This constitutes a medical emergency.
   Me      Let me get this straight. I feel fine.  I’m on my way to the gym and you want to bring me in here and give me chemicals to make me really sick?
   Doc     (trump card) You could leave tonight and I can pretty much guarantee you that within 30 days, you will be in the Emergency Room very ill and in another 60 days, you’d likely be dead. The choice is yours.

Insert discussion between mom and doctor here. 

   Me      Can I at least take my car home and put it in the garage?
   Doc     (not amused … and not wanting to let me leave to get an overnight bag. Kill joy!)

It was at this point, of course, my mind began to spin and I think there were some obituaries being mentally written at that point. But dammit, this was a VA hospital and I felt like cussin’ like a sailor, although admittedly, I really don’t have much of a potty mouth. This was one of those occasions my mom let the “F” bomb drop once we were on our way out to the car. I think I was in too much shock to let anything out.

A lot has transpired since that day. I’m past the 90-day mark that the doc told me would be my life expectancy if I didn’t get the chemo rolling and now still in the queue for a bone marrow donor. The transplant is a daunting procedure that will knock me for a loop, but I’ve spoken with a number of people who have been through it and are thriving now. The Leukemia-Lymphoma Society set me up to talk with a couple of guys who are survivors, one an eight-year survivor and the other a six-year survivor and I know personally two people who are about a year past their transplant dates. The common thread is that they’re alive and doing well. And that’s where my sights are set.

I harbor no illusions about sailing through it like I have the consolidation chemo treatments, but I’m hopeful it’s not as bad as I have shaped the process in my mind. I think we all tend to do that.  We build up this bogey man in our mind of what something is going to be and we live in that illusion of fear. Sometimes it’s downright debilitating. For me, I can’t tell you how many times I’ve built up the monster of an experience and while the actual event is not really pleasant, it wasn’t what I had imagined. I get through it and wonder why I had turned it into such a big deal. I can be my own worst enemy as I suspect we all can from time to time.

I think that’s why it’s so important to talk things out with others who have actually been through what’s in front of us. They not only help us navigate the mine field of our imagination, they can provide the real comfort we need. Cancer isn’t something any of us should fear. There are things we all can do to live a healthier lifestyle, but I’m living proof that even a healthy lifestyle of daily exercise and a decent diet isn’t going to deter this and I can’t say that genetics played a factor in my case. Everyone in my family lives to be pretty ancient and self-sufficient. Cancer just happens. When I’m on the other side of this, I’ll continue my daily exercise and balanced diet.  The “new normal” will certainly entail a bit more vigilance than before, but I’m going to be OK.

And today, I’m not afraid of tomorrow.  Yup, I’m a bit intimidated about the bone marrow transplant procedure as I do have this allergy to pain, but don’t we all? Actually, I have a relatively high threshold of pain, but I don’t like pushing it any more than the next guy. Truth be told, I’m really getting pretty tired of the needles. Maybe I shouldn’t have watched the Frontline presentation: Facing Death. That’s a laugh a minute, especially since two of the people they featured were dealing with failed bone marrow transplants. Actually, I watched it because of how I see death now. I’m not expecting to die, but I do have to face that eventuality and its possibility, no matter how unlikely, in my treatment. If I can face that ultimate fear, then everything else is pretty much gravy, right? (Nod your head here in agreement).

There are a lot of things in life that elicit fear – and I’m not talking about spiders, snakes, and small spaces. Watch TV for even 30 minutes and pay attention to the language: everyone’s trying to scare us into doing something. Advertisers want us to buy their product or else… and then there’s the danger lurking in our very own kitchen cabinets, details at 6:00… or the other political party is downright unpatriotic and dismantling our freedoms… or it’s just not safe to go to the (you fill in the blank). And the list goes on and on. We give these people even a moment of our attention and we feel threatened and moved to action as our fight-or-flight instinct kicks in.  Our blood pressure rises and we ask our doctor if this medication is right for us and we lock our doors, turn on our security system and become a high-strung hermit that has been scared right out of life, liberty, and the pursuit of happiness by the same system that was created by those noble ideals.

So…stop it!

Stop living in fear. Some of us will have bad things happen to us for no reason that makes sense. Some of us will have our houses burn down because of something that no one could have foreseen; some of us will lose loved ones to circumstances we couldn’t have imagined…and yes, some of us will get cancer. But we can’t live like we’re going to lose it all, but rather, may I suggest making the most of the life you have with those that mean the most to you…and that includes *you* today. And take care of yourself now and say the things you have in your heart to that special someone before you talk yourself out of it. Live your life with gusto and intention and make your decisions devoid of fear. Absolutely, weigh your options and consider the consequences, but don’t *not* do something out of fear.

Music for today - These Times by Safetysuit

 

These times will try hard to define me
And I'll try to hold my head up high
But I've seen despair here from the inside
And it's got a one track mind

And I have this feeling in my gut now
And I don't know what it is I'll find
Does anybody ever feel like,
You're always one step behind?

Now I'm sitting alone here in my bed
I'm waiting for an answer I don't know that I'll get
I cannot stand to look in the mirror
I'm failing
I'm telling you these times are hard
But they will

And I know there's someone out there somewhere
Who has it much worse than I do
But I have a dream inside, a perfect life
I'd give anything just to work
It's like I'm only tryin’ to dig my way out
Of all these thing I can't
And I am
Sitting alone here in my bed

I'm waiting for an answer I don't know that I'll get
I cannot stand to look in the mirror
I'm failing
I'm telling you these times are hard
But they will pass,
They will pass
They will pass
These times are hard
But they will

These times will try hard to define me
But I will hold my head up high
Sitting alone here in my bed
I'm waiting for an answer I don't know that I'll get
I cannot stand to look in the mirror
I'm failing
I'm telling you these times are hard
But they will pass

And I know there's a reason
I just keep hoping it won’t be long ‘til I see it
And maybe if we throw up our hands and believe it!
I'm telling you these times are hard
But they will pass
They will pass
They will pass
These times are hard
But they will pass

Strong

It’s not a big surprise that cancer saps your strength. Being short of breath is one of the symptoms of leukemia in particular since the effect of the disease is to produce fewer mature red blood cells, the carriers of oxygen to the body. For me, that really wasn’t a symptom until I began treatment when anemia became pretty severe and it was all I could do to go up a flight of stairs. That’s not a wonderful revelation when you’re used to taking the stairs out of principle. I made it to the top and felt as winded as if I’d been running the length of a city block. But aerobic fitness isn’t the only place where I’ve found that my strength had ebbed.

I wrote last week about a comical fall I had at the car dealership where I had dropped off my vehicle for a factory recall repair.  The strength I took for granted to keep me balanced just wasn’t enough and I took a bit of a spill on to my gym bag that held my sweats. And then adding insult to injury, I didn’t have the strength to stand up with the two bags I had been carrying, so I had to put them down and stand up and pick each of them up one at a time. Yesterday, I went to physical therapy to see what I could do to maintain some muscle tone during my illness. Other than walking around a few city blocks or in the tunnels of the VA complex, it was the first time I had really gotten some good physical activity, let alone visited a gym since that fateful night - the night I received my diagnosis - I was kept from going to the gym in lieu of inpatient testing. It was also the first time I could quantify just how much strength I’d lost in the past couple of months.

Based on what I used to lift, it’s fair to say that about 50-60% of my strength has gone.

I honestly didn’t know where I would fall out on the spectrum, but it was hard to try to lift a weight and then finding I didn’t yet have the strength for that, pull out the pin from the weight stack and move it up a plate or two until there was an amount I could actually lift and then find the right amount I could do three sets with the physical therapist. My legs were the biggest surprise.  While I could ride the bike at a comfortable pace for quite some time, I’m sure I wouldn’t have been able to dial in much resistance to simulate a hill.  The once tree-trunk thighs and carved calves are a bit thin and rather than 300 pounds, I was pushing 130. My biceps where a PICC line had pierced were the biggest drop – a mere 20 pounds pushed my limit. Sure, it’s to be expected, but the male ego is a powerful force, even for a 50 year-old! I think the encouraging part of this is that I can get some supervised physical activity to perhaps stop the atrophy and perhaps even reverse it before going to Seattle for the transplant. The doc did say to stay as physically active as possible and I’m just glad I have a way to do that now.

After my exercise in humility, I did my regular blood draw. Today, I got to see them pull a sum total of, count ‘em, eight tubes of blood. Two of them were my regular three-times-weekly draw to monitor my blood count and chemistry. The other six were being sent to Seattle to begin the HLA-typing for my transplant. The nurse I spoke to today estimated another two months before I would be showing up there, even with a rush (which there apparently is). I think it’s fair to say, I’ll be spending most of the summer here in Utah and the fall in Washington state. Of course, things could happen sooner and I’m hoping they do since there are a lot of people who are on stand-by for “the call.” Truly, the hurry-up-and-wait is in full force with the VA. I have to believe someone on the other end of this process is also being pushed along and waiting for me.

Of course, strength isn’t limited to the body.  The spirit strong / body week analogy works here.  I have had physically imposing men that I respect tell me that I’m strong or that they couldn’t do what I’m doing. On the one hand, it’s not like I volunteered to do this; on the other, the struggle I fight truly is in my mind, so not only am I being weakened physically, I duke it out in ways that just can’t be seen with the eyes. I think that’s why people who survive a crisis of some sort tend to be different or transformed on the other end of their ordeal.  Their minds got a major long-term work out and you just know it when you meet one of these people.  They have a presence about them that belies the personal hell they walked through. You know someone has been educated the same way. This is just the post-graduate level of the school of hard knocks.  Cancer is definitely the PhD level and I think it’s fair to say you’re reading my dissertation.

So, my mental biceps may be looking good even if my physical ones have scars from PICC insertion sites; and my emotional legs may be paradoxically the strongest part of me (though I cry more these days more than I care to admit) while my physical legs look a bit scrawny. That’s because I’m walking through some tough stuff where you might not see it. Despite my outward appearance and personal expectations, I am, yes, strong.

Music for the day is another oldie from when I was a kid:  Simon & Garfunkel’s Bridge Over Troubled Waters

When you're weary, feeling small
When tears are in your eyes
I will dry them all
I'm on your side
Oh when times get rough
And friends just can't be found

Like a bridge over troubled water
I will lay me down
Like a bridge over troubled water
I will lay me down

When you're down and out
When you're on the street
When evening falls so hard
I will comfort you, I'll take your part
Oh, when darkness comes
And pain is all around

Like a bridge over troubled water
I will lay me down
Like a bridge over troubled water
I will lay me down

Sail on silver girl, sail on by
Your time has come to shine
All your dreams are on their way
See how they shine
Oh, if you need a friend
I'm sailing right behind

Like a bridge over troubled water
I will ease your mind
Like a bridge over troubled water
I will ease your mind