You Don’t Have to Find Out You’re Dying to Start Living

I originally wanted to title today’s post, You’re So Vein because my veins have been getting smaller and scarred with each successive stick. Jason, the very skilled nurse that installed my PICC line today now has a certain Carly Simon song of the same name that has effectively embedded itself in his cerebral cortex thanks to yours truly. So, I’m now sporting my shiny new PICC line awaiting chemo and all the other fun-ness that goes along with it. But, I do want to take a serious turn at this point, so don’t mistake my humor for irreverence. If you’ve read anything prior to this post, you know I have a streak of flippant humor that has helped me cope through the seriousness of what it is I’m working through.

I have acute myeloid leukemia – a form of cancer that affects my blood production. The day I was diagnosed, I was given three months to live if the cancer went untreated.  That three month mark is today and I’m very much alive and I feel as good. Today is also the beginning of my third cycle for chemotherapy or what I so affectionately call toxic chemical goodness. I was admitted this afternoon and barring any unforeseen circumstances, I’ll be heading home on Sunday and will resume the waiting game for a bone marrow donor. Because of my relative young age and insistence on keeping physically active, I’ve really been doing rather well.

This is the sixth hospitalization since I found out I had 50% cancerous cells in my bone marrow and was living on borrowed time. Looking back over the past three months, I’ve obviously learned a tremendous amount about cancer and leukemia in particular; I’ve learned a lot about human kindness as well as human nature; and I’ve learned quite a bit about myself.  Looking at yourself through cancer-colored glasses, the pretense falls away and you see yourself for who you are. You also see others much more clearly. The honesty is, in many ways, brutal, but it can be refreshing and bring you peace if you take in the whole picture rather than keeping the focus on yourself. In that way, cancer really is a gift. Just like any gift though, we have to be willing to receive it – accepting both the responsibility as well as the benefit for its ownership. There is no re-gifting of this bad boy.

Cancer has a way of forcing you to confront reality, to see things for what they are. Barriers drop and when smiles come, they tend to the real deal. Pretense and pity find no stronghold and your priorities become pretty apparent. For some, there’s an overwhelming, “why me?” In my case, I’ve found that cancer has intensified my sense of gratitude and even the small things that I had otherwise taken for granted now assume a whole new character and meaning. I can’t say that impending mortality is what drives this heightened awareness, but in the grand scheme of things, it’s fair to say that when faced with a life-threatening illness, there’s an element of time that pulls it out. I’ve said it in different ways in past postings, but in honor of Zach Sobiech, who passed away today at the ripe old age of 18, I’m using his words: “You don’t have to find out you’re dying to start living.”

A friend of mine from Minnesota had posted a music video on Facebook that Zach had made and I used it as my music of the day on my posting on April 3. In the same way I use writing and humor to cope and to express myself, he uses music. I felt an instant connection in that Zach was dealing with a cancer and his attitude was positive and contagious. And that was just from the video clips I saw. In his case, he has a bone cancer called osteosarcoma. I found out the sad news today that he went down today in his fight, but you can be assured that Zach Sobiech did not lose. While he had some very bad days, he had some very good days as well, and from what I could see, his impact was felt far and wide and for an 18 year-old, he leaves an incredible legacy. He fought his battles with such grace and good humor and we could all learn a thing or two from him.

It’s another variation on the theme: “I don’t control life, but I control how I react to it.” It doesn’t mean simply allowing life to happen, but rather living life. I am saddened that Zach’s life was as brief as it was, yet he packed a lot in those eighteen years! I don’t know how many more years I have. I may have a few or I may end up outliving my grandfather’s extraordinary 99 years. Who can say? What I can say is that the years I do have remaining are going to be even more fruitful and extraordinary than the ones I’ve lived; and I’ve done an awful lot.

It doesn’t take a bucket list to do what’s important before we die. It just takes the will to really live. Don’t wait for someone to tell you that you have an expiration date. But don’t take my word for it, listen to the wise-beyond-his-years Zach Sobiech in this video.

 
Click here to see the celebrity video from the song he wrote.  You can see part of it in the video above.

 

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

I'm the Guy

"Ultimately, it’s up to you, Mr. Park.” The doctor was looking at me with a cross of expressions – one that was sympathetic and the other of impatience.  As much as I wanted to leave the shrinking four walls of the hospital, leave the pain of the endless missed sticks into my shrinking veins, and of course my shrinking patience, I’m no doctor and the reason I came to the emergency room Thursday morning was in compliance with my discharge orders and there were dire precedents for doing anything less than what I did.

Flash back just 24 hours, one of the more senior hem/onc doctors and I had resolved what had been a rather terse exchange from the previous day. He was of the opinion that I should remain in the hospital until my neutrophil count exceeded 500; the medicine team stood by their opinion that 48 hours without a fever or positive blood cultures while treating with broad-spectrum antibiotics was sufficient. I felt like  I was backed into a corner where my decision would pit one group against the other and when I added the pain of having yet another IV blow out and the nurse missing on reinserting a new IV needle, I was at the edge of tears again. I'm a tough stick right now and I know that, but any way you slice and dice this one, a needle stick just plain hurts. I wouldn’t leave against medical advice, so I told the doctors to work it out and present me with their combined counsel and I would go with it…and the doctor gave me exactly that and still made me choose what to do.

This has become more and more what cancer has done
to me...or for me. I'm responsible...I'm the guy.

I elected to go home.

At home, I had oral antibiotics, antivirals, and antifungals; and I would be clear of coughing orderlies and hallways of sick people; and I would be free from the needle sticks! It was my call. I’m the guy who is ultimately responsible for my own treatment.

On Wednesday, I met with the assistant to the hem/onc who has been overseeing my care since diagnosis. My white count was in the normal zone and she was happy with my recovery.  She pointed out that one of the aptitude tests that indicated my suitability for transplant had to do with waking time out of the bed; 0 with the most, 5 the least. Even at age 50, I’m still among her younger patients and she confirmed that being physically active was a major factor in leaving the hospital as quickly as I have. Having gone through three rounds of chemotherapy, my immune system has reacted with some regularity, so working directly with the physician’s assistant today, we were able to come to agreement on when to start the oral drugs at home and prevent another unplanned visit to the ER. Once again, I’m the guy. I’m responsible. It was because of taking charge that I had preventive drugs at home after my first consolidation round of chemotherapy. I asked about it and within an hour, I had a sack full of big, white horse pills with a foul aftertaste.

It’s far too easy to relinquish the many decisions to someone else who is the expert, but when push comes to shove, it’s my body. I have no desire to go through years of medical training, but I absolutely want to understand what’s happening to me in terms that I can understand. When the doctor in the sterile white coat told me I had leukemia, my mind couldn’t process that pronouncement other than, “this is bad” and it had something to do with white blood cells.  Since then, I’ve read a lot from books people have given or referred to me, looked at a lot of Internet research, and asked a whole lot of questions of nurses, doctors, survivors, and other subject matter experts. Without a doubt, it is the firehose method of learning.  Then again, when it’s happening to you, that otherwise impossibly steep learning curve becomes scalable and even the complicated words become relevant and their pronunciation is now possible.

Now, when a doctor tells me he’s prescribing a medication of any kind for me, I ask the name of it and what it does as well as the side effects. On the same note, I tell the doctors everything. We discuss what’s going on because I’m the guy. I won’t tell them how to do their job, but I’m ultimately responsible for my well-being, so if there's any input, I'm going to make it and I have to be willing to make decisions as well. Part of that responsibility is communicating to others my expectations. The major bone of contention I had with the doctor with whom I had a bit of a row was a lack of communication. I had not been told that my blood counts had fallen to the point I needed to be taking the medications I was prescribed. Had I known, it’s very likely my visit to the ER and all the other unpleasantness that went with it would have been totally unnecessary. I can’t say that with all certainty because I’m not a doctor, but during the previous cycle when I had a call each day after my labs were processed, I knew when to start the antibiotics, so I had many, many medically boring days-a good thing! Today, I received one such call to tell me my blood counts were in the normal range. It took less than a minute and while no catastrophe was averted this time, I was comfortable knowing that I was OK all around. It definitely takes some pro-active involvement and from everything I’ve been told, no one minds the questions.

That’s also why I am bent on physical therapy at least three times a week. I want to be in the best possible shape when it comes time for my transplant. There’s no secret it will be an extremely demanding procedure, so I need to be strong. I’ve been pretty vocal about being upbeat and positive because everything I’ve read and heard tells me that attitude plays a very important role in how well and how quickly our body responds in healing as well. I have to do whatever I can to get strong and stay there, mentally and physically.

This cycle is coming to a close and I go back in for round 3 of consolidation chemotherapy on Monday. I was feeling too good and enjoying the sunshine too much to have this fantasy last too long! This entire round has been rough. It was a painful inpatient stay and I felt like I had some emotionally taxing days in between, notwithstanding this latest visit to the ER and being admitted afterward. It was filled with a lot of life lessons in the meantime, many of which I’d really rather not learn…or re-learn. I have one of those passive-aggressive streaks and I have a way of shutting down when emotions engage. Unfortunately, cancer has been chipping away at that too. What kind of unhealthy coping mechanism am I going to be able to resort to if those are gone? Nothing about this is fair, is it? Ah well, I am the guy and I am responsible, after all. Gotta stand up and face it head on.

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

Music for the day is Stand by Rascal Flatts

You feel like a candle in a hurricane
Just like a picture with a broken frame
Alone and helpless, like you've lost your fight
But you'll be alright, you'll be alright

‘Cause when push comes to shove
You taste what you're made of
You might bend ‘til you break
‘Cause it's all you can take

On your knees you look up
Decide you've had enough
You get mad, you get strong
Wipe your hands, shake it off
Then you stand, then you stand

Life's like a novel with the end ripped out
The edge of a canyon with only one way down
Take what you're given before it's gone
And start holdin' on, keep holdin' on

‘Cause when push comes to shove
You taste what you're made of
You might bend ‘til you break
‘Cause it's all you can take

On your knees you look up
Decide you've had enough
You get mad, you get strong
Wipe your hands, shake it off
Then you stand, yeah, then you stand

Every time you get up
And get back in the race
One more small piece of you
Starts to fall into place, yeah

‘Cause when push comes to shove
You taste what you're made of
You might bend ‘til you break
‘Cause it's all you can take

Beauty in the Breakdown

At the outset of my diagnosis, a close friend of mine told me about something called “chemo brain.” At the time, it came across as yet another euphemism for “old timer’s,” a “senior moment,” or something along those lines, but it does exist. The more reputable web sites such as The Mayo Clinic will acknowledge it, but in a way that makes it sound more anecdotal rather than factual. In listening to the many, many cancer survivors who report short-term memory problems as well as my own experience, I can say unequivocally that my brain’s short-term memory is working just fine. The only caveat to that is that it’s not getting same-day delivery as often! My long-term memory actually works really well as can be attested by visitors. I think the best way to explain that one is that I can read their minds, but just not my own! How fun is that?!

It can be entertaining when you’re with a group of people who are in the particular age group where it takes a bit of extra cognitive effort to remember things. I feel a little less impaired and we all have a laugh because my particular brain farts are more unpredictable. After all, they weren’t there just a few months ago…a bit like my hair actually was there. I think it just proves that hair does carry brain cells in it and when it falls out because of chemo, well, you do the math.  My ex-wife used to tell me that placenta was another word for brain cells, but it seemed to me she didn’t get any less sharp mentally with the arrival of new kids.  Actually, I think we both got smarter. The older kids got away with much more than younger ones!

I’ve found that after a round of chemo treatment, I have to think a bit harder to express myself or find the right word which, for someone who writes a lot, is frustrating. As the days pass, it seems to alleviate some, but since I go back in for another round every 28 days, there isn’t enough time for it to completely go away. But this will all end at some point and I’m expecting to get all my faculties (and my hair) back in good working order. So, since I had my last treatment in the second round of consolidation chemo last night, you’ll have to cut me some slack if I forget a serial comma, dangle a participle, or am guilty of some other such grammar infraction! This is roughly equivalent to driving on a hangover – nothing too terribly dangerous, but I should be sleeping it off, right? Well, since I haven’t had a hangover since 1983, I’m probably not as qualified to comment on that, but since I have, in fact, had a hangover, I can. Moving on!

I was discharged from my suite at the hospital this morning rather efficiently. I was told initially that I would get my papers between 10:00 am and noon and by 10:20, I had my prescriptions and had signed my discharge papers; by 10:30, I had my PICC line removed and was ready to roll. The VA hospital was remarkably quiet.  It usually is anyway on a Sunday, but I noticed most of the week that many of the rooms were being cleaned since the “census” (patient count) was lower than I remember from my previous two visits. The four walls of my luxury suite gave me a serious case of Cabin Fever this week as the weather has been really nice out and today was no exception.  The temps pushed into the 70s and I was pushing to break out. You know what it looks like on the inside of a hospital room.  I thought I’d actually take a picture of what it looks like on the outside since I don’t see that all too often.

So, we’re back in the waiting game.  I found out two weeks ago that the Veterans Administration had approved my transplant. This past week, the paperwork had been forwarded and now the donor search can actually move forward (the crowd roars).  I’m hoping that I don’t see another round of consolidation chemotherapy before I find out that a donor has been identified, but it is a possibility.  In the meantime, of course, we’re all on hold, waiting for the donor to be identified and to agree to go through the procedure. Thankfully, it’s not as daunting and painful as it used to be.

I did come across a highly publicized story this week about a college athlete named Cameron Lyle who decided to forego his ultimate track and field meet in order to answer the call to be a bone marrow donor and save someone’s life.  It not only gave me hope in my fellow man, but it also gave me hope for my own case. There is someone out there who is also foregoing something significant to give me a second chance at life as well and when that happens, trivial things like ‘chemo brain’ just fall by the wayside. The term that jumped into my head as I was considering what to write today was ‘beauty in the breakdown,’ something I heard from a soundtrack to Garden State some time back, yet it encapsulates everything about what I’ve felt this week and even the comedy of ‘chemo brain.’

You see, there’s something very attractive and special about breaking things down to their essence. And a breakdown in the sense of a failure of some sort is often the only way to get there. It’s a particularly effective and direct way to do so because this part of the battle against cancer I cannot and really should not fight.  This is the transformation that I have to embrace amid the pain of it all; this is the part where I have to let go in order to win the fight. I am fighting to win the battle against cancer of course, but letting go to find something…someone whose essence is emerging through the struggle – and that would be me.

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

 

So, in honor of that beauty in the breakdown is the song I got it from: Let Go by Frou Frou off of the Garden State soundtrack. This link has scenes from the movie.  The 'video' above is the music only.

Drink up baby doll
Mmm are you in or out
Leave your things behind
'Cause it's all going off without you
Excuse me
Too busy
Oh, writing your tragedy
These mishaps
You bubble wrap
When you've no idea what you're like

(So let go) so let go
Jump in
Oh well whatcha waiting for
It's all right
'Cause there's beauty in the breakdown
(So let go) let go
Just get in
Oh it's so amazing here
It's all right
'Cause there's beauty in the breakdown

It gains the more you give
And it rises with the fall
So hand me that remote
Can't you see that all that stuff's a sideshow
Such boundless pleasure
We've no time for later now
You can't await your own arrival
You've twenty seconds to comply

(So let go) so let go
Jump in
Oh well whatcha waiting for
It's all right
'Cause there's beauty in the breakdown
(So let go) yeah let go
Just get in
Oh it's so amazing here
It's all right
'Cause there's beauty in the breakdown
'Cause there's beauty in the breakdown

So let go
Jump in
Oh well whatcha waiting for
It's all right
'Cause there's beauty in the breakdown
So let go
Jump in
Oh well whatcha waiting for
It's all right
'Cause there's beauty in the breakdown

Mmm the breakdown
'Cause there's beauty in the breakdown
Hey, the breakdown
So amazing, yeah
'Cause there's beauty in the breakdown

Perspective

True to form, after my posting yesterday, I was introduced to someone today who put everything in perspective for me. A med tech that I hadn’t yet met was assigned to me yesterday whom I found out was a two-time cancer survivor.  She was also assigned to me today, and as I had finished my shower, she was changing the linens on my bed.  We chatted a while when she had finished and with the challenges she had and her positive attitude, I felt buoyed at the possibilities for the future. In trying to articulate how I felt, how I’m hurting, how I’m grasping for hope, I didn’t have to explain anything. As a survivor, she just knew - instant empathy. Now, that doesn’t mean that only those who have walked through the valley of the shadow of cancer can understand, but it’s just easier to get to the heart of things. Just before lunch, I wandered down to physical therapy and rode the stationary bicycle for about 20 minutes. After being accustomed to riding long distance, 20 minutes seems so paltry. Yet it’s what I can do right now. On the way back to my room, my new med tech introduced me to another vet, ostensibly because we’re the two youngest guys on the ward – but it’s the someone who unwittingly put things right for me and actually said that the best thing that could have happened to him is having his legs blown off.

If that doesn’t get your attention, not much will. He was situated in the same bed I started out in my first night in the VA hospital. The other bed in the room was gone and there were no chairs, so he had me sit in his wheel chair – a much more comfortable rig than the one I had been ferried around in during my bad days of induction chemotherapy. When you spend as much time in the thing as he does, it better be the most comfortable thing around! We shared some small talk, but in the same way I needed to talk to someone who was a cancer survivor, I found someone who, as a veteran, didn’t have the biases that are so common to both Utah as well as the officer corps.  We just connected and the small talk progressed to what I would have considered a rather tough thing to talk about – how he lost his legs.  For him, he jumped right into it, telling me the harrowing day that as a combat corpsman, he saved his two compadres, was slammed into a wall where he sustained unspeakable injuries, was stabbed by an Iraqi soldier, and still lived to tell the tale.

And yet, he was able to smile through the telling and actually say to me that he would rather be in his shoes (figuratively, of course) than mine.

No, it doesn’t take any time at all to find someone else in the hospital who is in worse shape than you, but I guess I didn’t take myself as being considered in worse shape than someone else. That’s perspective. The reason the perspective is there is not simply because we’re all different or because our experiences – even the same sorts of experiences – vary nor is it because we’ve had different cultural or socio-economic upbringings. It’s because we’re moving from one point in life to another.

In my posting last night, I quoted Nick Vuijicic as saying that we may not control what happens to us, but we can control how we respond. So, whether it’s an illness, injury, or personal crisis of some other sort, it’s all the same. We can choose to be defined by an event or we can be transformed into something new and better from our experience. Sure, we should expect some good days and bad days in the process, but we should also expect something genuinely good at the other end of the process. I’ve seen it in myself, I’ve seen it in others, and I saw it again today with my newfound friend. I can’t say that I would be able to be as truly upbeat as he is today after going through what he has, but it simply reinforced the point I’ve been espousing from the day I got my diagnosis and have been trying to project each day – healing is as much in our own power as it is within the medical arts. They have to work together. One without the other probably won’t get the desired result.

I’ve had to reinvent myself after a personal crisis or two and it’s fair to say that there will be some amount of reinvention at the end of this adventure in cancer. There will no doubt be some constancy in my life and in relationships, but there will also be new experiences and new people that will pave the way for heightened understanding and empathy as well as a new perspective in my life and that of others. I’m seeing though that it doesn’t always take the extreme of a crisis to do that, but we simply have to be open to new ways of thinking and seeing what is going on around us.

One of the hem/onc doctors described the bone marrow transplant as a super-duper long-term consolidation chemotherapy that totally kills the leukemia cells, which on the one hand didn’t thrill me since from my viewpoint, I’m shooting for "the cure." On the other, that’s what chemo does on the short term, so the description pretty much works. And in the same way, we all have small doses of chemo to help us kill off the bad things in our lives. And just like leukemia, if you don’t have the right circumstances (or in my case ,the transplant), the bad stuff comes back and it can take you out of the game. So, the important take-away here is to embrace the change, the new perspective, and be open to reinventing yourself to the improved person you know you want to be...and it's OK to have a bad day from time to time. Change isn't a cake walk. Perspective is not something that has to remain etched in stone from years of habit, but rather something that should develop and be engrained with the nuances of experience – yours and that of others. Enjoy the journey!

My music selection today is from Simon Webbe in anticipation of better days ahead – Comin’ Around Again

I've been sittin' in the darkness
But the sunlight’s creeping in
Now the ice is slowly melting
In my soul and in my skin
All the good times, my friend
Are coming around again
 
I've been thinkin' reminiscing
Of better nights and better days
Hidin' in the refuge of
Memories I've made
I gotta feeling within  
It's comin' around again

It's comin' around again
We've been so long waiting for the all-time high
We got a damn good reason
To put your troubles aside
And all your winter sorrows
Hang them out to dry
Throw it away, gotta throw it away
All the colourful days my friend
Are coming around again

Frequent Flier

In my previous professional life, I used to do quite a bit of traveling. I have a special portfolio of sorts where I keep all my frequent flier and hotel reward program cards. If you’re one of those road warriors, you know the drill when you check-in for a flight or a night’s stay at your chosen hotel chain. They see the gold or platinum colored card and they smile and thank you for your loyalty and give you the fresh baked cookies or other perk that goes along with the program. It’s kinda nice actually, especially if you have to be away from home for days on end.

"Just a spoon full of Starbucks helps the chemo go down....in
 the most unlikely way!" Starbuck's courtesy of my sister, Lynette
(big hugs). We won't be giving up our day jobs to be songwriters
 any time soon, but we do have the tried and true family warped
 sense of humor! My nurse of the day, Carol wearing the latest in
chemo blue fashionwear.

Now, if my calculations are correct, I have 31 days here at the Hotel California, one of the club ‘med’ chains where you can check-out when the doc says it’s OK, but you never really leave.  I keep coming back three times a week when I’m not inpatient and I’m bedding down on night number two for another one of those extended stays. My travel plans have me checking out Sunday morning if all goes well. I don’t know if that will put me over the line for the platinum level rewards yet. If I were to guess, I would say it does since I have the nice room, so they must have sent the special fru-fru card in the mail. No cookies on check-in though, but the room service is pretty nice. Once I finish up in Seattle, I’ll no doubt have the coveted black card! Not too many of us get that one…and honestly, who would want one?

There have been a lot of things I’ve wanted and when I got it, found it wasn’t all that it was cracked up to be. I can remember a quotation on Mrs. Van Rosendaal's (my 9^th grade health teacher ... impressed I remember her name?!) chalkboard that pretty much put that sentiment in a nutshell: Far better to receive not what one wanted than to receive what one wanted not.” That’s true on a number of levels. Very clearly, I didn’t want to be a ‘frequent flier,’ so to speak, at the hospital, but there have been a number of silver linings I’ll write about as I am able to list them out. The term, ‘pay it forward’ has been poignant for me as I’m seeing so many of the things I’ve done both in my recent as well as my distant past coming back to surprise me in so many wonderful ways that I continue to be astonished. People’s true colors have shone through – thankfully, most for good, but some have risen far above what I could have conceived. For lack of a better term, I feel truly blessed, especially considering the extreme circumstances.

Now that I’m physically attached to an IV pole that has the yellow chemo bag ensign only a few hours a day, I have been wandering about the hallways and tunnels connecting buildings in the Veteran’s Administration Healthcare complex. I’ve seen a lot of people who are in pretty bad shape and not all of our wounds are visible. Some of our guys are returning from war where the scars are in their minds, some are amputees, some are like me and battling a chronic or other long-term illness, some are traveling great distances to be here and just trying to get that ache taken care of. You can see it on the faces and that of their loved ones. And then there are those you don’t see.

Of the many evenings I spend here, weekends are generally when the patients who need a little extra attention or are en route to another facility show up in the acute care ward where I am. My first weekend as an inpatient was in a semi-private room and my roommate was an older gentleman who had broken his hip and was suffering dementia. Every single exhaled breath was a moan. I didn’t sleep well that night. I came back Monday for aggressive chemotherapy and that first weekend brought another veteran suffering dementia who didn’t have the presence of mind to use the nurse call, but rather shouted for help. Ear plugs were required for sleep that night. Again, last night, my next-door neighbor wasn’t suffering from dementia, but he could out-curse any sailor I ever met. I had heard him shouting for a nurse earlier in the day, but about 11:30 pm, he was at it again and even though my door was closed, he was shouting loud enough for me to make out every word, every epithet, and every threat. My naval officer training was pushing its way up and after about 30 minutes of his tirade, I was ready to walk next door and find out who thought he was the hospital’s most important patient, but about midnight, it finally quieted down.

Today, it has been mercifully quiet.  I can only assume that he has been given the extra milligram of the pain medication he had been demanding…or a lovely placebo. That, of course, makes me wonder truly what it was that he wanted: was he, like so many veterans here, alone and in severe need of someone to give some attention or was there some legitimate pain that needed relief? Or perhaps a bit of both?

Because so many people on staff know me by name now, it’s not uncommon for them to stop by and chat me up. One of the administrators who takes the brunt of people like the man who threw the temper tantrum yesterday has much more patience that I do with that kind of behavior (obviously the person for the job!) talked to me a bit today and put the event into perspective without going into any details. It drove the point home that this particular Club Med is for healing, even if sleep isn’t a high priority! It drove home just how compassionate and longsuffering the staff is. That’s something I knew already, but the people that are hard to understand, hard to communicate with, or hard to placate prove that there’s an unwritten part of the job description for the nurses and med techs that transcends mere compassion and extends to a kind of love for one’s fellow man that is nothing short of awe-inspiring. I’ve seen it, I’ve experienced it, and I’m grateful for it.

This isn’t something I asked for as a frequent flier, but it took being one to really grasp it both in the big picture and in its many nuances. It’s more than knowing someone’s name; it took sharing the vision of hope in a child; it took mingled tears of losing a patient, of surviving one’s own cancer, of the promise of retiring in good health; it took sharing a smile, of our mutual humanity. I can’t say that these difficult patients will understand the kind of commitment that the people who work in health care have for their patients and their career, but you can be assured it’s completely devoid of politics and completely full of the qualities that allow for healing and for a thriving and healthy community.

Today’s music is a blast from the past, but the lyrics seem to be both a tribute to my medical professionals here as well as a reminder to myself.  Argent’s Hold Your Head Up, originally released as a single in 1972.

And if it's bad
Don't let it get you down
You can take it
And if it hurts
Don't let them see you cry
You can take it

And if they stare
Just let them burn their eyes
On you moving
And if they shout
Don't let them change a thing
What you're doing

Patient, Heal Thyself

I’ve often been referred to as a renaissance man. A renaissance man is basically someone who has a lot of different talents and a broad base of knowledge.  For people who know me, the description fits me to a tee.  The military career has the effect on creating an entire force of renaissance men, especially in the officer corps. No doubt, the TV series McGuyver had to have been based on this concept. I may have been trained to operate and navigate a naval warship and to pilot aircraft as primary warfare specialties, but while I wasn’t in the pilothouse or in the cockpit, I had a never-ending list of tasks that only had a tangent to my specialized training in the air or on the bridge. But, of course, it’s never good enough to simply get a job done. We had the material inspections, the planned maintenance, the scheduling, the jump-through-the-hoop-for-the-admiral things, and then we just had our regular jobs. We had to be good at everything. We were trained to be the ultimate renaissance men.

One of the many things I’ve had to pick up and become proficient as of late is the area of medicine.  It’s not enough that I understand simple things like acetaminophen is Tylenol or the major components of blood chemistry. I’ve had to understand my own physiology and make sense of the many, many interdependences of what different medications have on my systems and why I should take them or why I should refuse them. I’m not a doctor, but I *have* to be smart enough to ask the right questions and propose a different course of action if I don’t agree with what I’m hearing. As a parent of a child with a congenital heart problem, I had to get up to speed on cardiology. Without doubt, hover parents have nothing on a parent with a sick child. I got to the point that I briefed the medical team as well as the interns during their rounds (that is what the attending physician told me). I knew every detail when it came to my son and while I never interfered, the doctors knew I was engaged…and they respected that involvement. And as a patient now, they demand it and I am happy to participate.

Participation in one’s own healing, I have come to see, isn’t optional. I’ve been working my way through Norman Cousins’s Anatomy of an Illness which was published in 1979. He worked with his physician in stepping outside the medical norms of the day and made laughter part of his therapy and found that it actually made a physiological impact. He posited that ten minutes of belly laughter was the equivalent of at least two hours of pain-free sleep for him. He and his doctor took data on his condition and found that laughter also directly affected inflammation as well. While I’m certainly not suggesting withdrawing from traditional western medical practices and take regular doses of slapstick, it’s clear from my own experience and that of many others that attitude is so critical…and that laughter truly is the best medicine. And that, dear readers, is but one of the reasons I keep placing such a strong emphasis on being optimistic and keeping me smiling if not outright laughing.

When I was admitted this morning for consolidation chemotherapy, I was delighted that my favorite people greeted me with hugs, smiles, and laughter. Despite coming back to a hospital for more toxic fun, the people that kept me smiling were the ones that were authentic, compassionate, and full of life outside their job.  Two of the med techs had even gone skydiving the day I left last week and have pictures to share. The nurse who got me settled in was already launching into jokes and before long, it felt like old home week rather than the Hotel California where I was about to get a needle inserted into my spinal cord. I’m not particularly excited about ingesting poison as a check to the leukemia, but I know I’m in a safe place as paradoxical as that may sound.

As much as I’d far rather be at home, I’m happy to be in a place where the people who work here not only are suited for their work, they are full of life and they enthusiastically share it. And realistically, doesn’t that describe the kind of people you really want to be around?  Who wouldn’t want to be around genuinely happy people who choose to live rather than exist? And here’s another one of those parallels where you don’t have to be in my hospital-issued traction socks to figure that one out.  You know the people around you who add to your life, who make you smile, who are the renaissance men (and women) who just seem to be able to do it all and enjoy putting you on the business end of their kindness. Seek these people out and be like them. You’ll find yourself helping others with gusto and an authentic smile and in so doing, you’ll find that you’re unwittingly helping yourself.

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

You Are Here

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

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

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

But I am here.

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

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

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

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

Precautions, Pre-release, and Presumption

Under normal circumstances, I would be concerned if the doctor shrugged his shoulders and said, “I don’t know,” but today when nary a one could isolate the reason for my fevers, I wasn’t dismayed. That’s because the rationale made sense. “We think it’s probably just your bone marrow re-starting.” Most leukemia patients are feverish as a result of one thing or another following the decimation of the immune system. A barrage of nasty sounding antibiotic, antiviral, anti-nausea, anti-fungal, anti-mold, and other broad spectrum anti-drugs are dispatched to fight off invaders in the immune system’s absence, so the actual reason for the fever is often hard to tell. Blood cultures are taken at the onset of the fever, but in my case, nothing grew. The inflammation in my intestines healed, and I still had nothing in the way of lesions, rashes, or other nastiness that the Infections Disease people could analyze. And to top it all off my neutrophil count was a whopping 894 today! Because 500 is the benchmark for discharge, the first three doctors I saw today were assuming was going home today.

But there’s more to this rodeo than just the neutrophil count. I got my first round of Methotextrate chemotherapy this afternoon intrathecally (i.e. directly into the spinal cord). It wasn’t nearly as bad as it sounded and I was given some happy juice which made the experience mercifully short and practically painless. If it gives everyone (myself included) the warm fuzzy to ensure the leukemia stays away from my cerebrospinal fluid and the brain, I’m on board with the inconvenience, believe me!

 

I also got a spin in the courtesy van over to the dental clinic where I was curtly told that I didn’t confirm the appointment. Um, yes, that’s correct because I didn’t make the appointment. But…we play the game because a dental consult is all that stands between me and my marrow transplant package being transmitted for approval to Washington, DC. I was looking forward to going and looking at the dentist saying with impunity, “No, I didn’t floss! They wouldn’t let me!” Nyah (emphasis, mine). So, I got to go back in the courtesy van back to the hospital, but at least I got to see the sunshine again. Spring Fever has officially arrived, can you tell?

It looks like a time line is starting to gel on the end game here.  The Induction Round of chemotherapy is normally 28 days, but I will be discharged tomorrow, nearly a week early (and the crowd roars). How nice it will be not to be peeing in a cup, not being tied to a pole, not being awakened so someone can take my vitals, take my blood, listen to the sounds of my guts, my lungs, me say, ‘ah,’ … and … I get to sleep in my own bed that doesn’t whir up and down and wheel through the halls! Oh, and I get to eat when, what, and if I want. Oh, you do all that stuff already? Lucky stiff! Next thing you tell me you can pretty much wear what you want.

 

So, I will be back in my own digs for the week.  From this point on, the search for a suitable and willing bone marrow donor is in earnest.  Before I go to Seattle to make this happen, I will need another four days of ‘consolidation’ chemotherapy, which is inpatient here locally.  That could happen as early as next Monday. Thankfully, the consolidation round isn’t as arduous as the induction is, so my hematologist suggested that at the end of the four days, provided everything is as smooth as this round, I could be turned right around for more home time.  It’s not party time yet as I’ll have to mask up once I leave my condo and won’t be in crowded places any time soon. But hey, I can get out. I could take a drive or take a walk around the block!

 

Once the consolidation round is done and I’ve finished my back-breakers, it’s a waiting game for my donor. It could happen quickly or it might take a month or two. I mentioned last night that many American matches originate from Germany, so I figure that once that 20-something über-strong, blond and handsome German donor has bravely stepped up to the plate, it’s time to play ball. I should point out that even the fraüs in Deutschland are pretty über-strong, so I can’t lose! Nein! The ball game is in Seattle and takes a total of 114 days from that point.

 

This really is an endurance event. I feel very fortunate to have some good genetics that have kept me these 50 years, but I feel very good, too, that I take the time as part of my daily routine to exercise and eat well.  That I’m leaving the hospital a week early is testament to the fact that good physical condition plays a huge part in my recovery.  You don’t need to be a gym rat or some fitness fanatic. If you’re able to commit to taking good care of yourself with regular strenuous exercise several times a week and make some the obvious changes in your diet, you will be far ahead of most people and it could quite literally be the difference between surviving a round of chemotherapy or not – I didn’t make that up, it’s what doctors have told me about why I’m doing so well. My sport of choice is long-distance cycling because I enjoy it, so find an activity you enjoy and then make one small change to your diet and see what a difference it makes. What can that hurt?  Do what you like and like what you eat (just don’t overdo it). How hard is that?

OK…I’m looking forward to my last night in this room. It’s been real.

 

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