Sunday, March 31, 2013

Pain and Suffering

Ah, what a topic, huh? It’s a topic I can’t speak about with much authority as I have been extraordinarily healthy most of my life.  That’s not to say that I haven’t been injured or experienced my own ups and downs, but clearly I haven’t had to walk down the road of chronic pain or extended physical or emotional discomfort. For those who have issues with pain and suffering, I’m much more empathetic now than I used to be and I suspect that after my treatment is over, it’ll be all the more so. That’s not something I revel in, of course, but it’s something I know is part of healing.

At the risk of sounding cliché, pain is important. It’s something that preserves, warns, and protects us from something really serious. Those afflicted with Hanson’s Disease (leprosy) pray for the gift of pain while we in this country can rattle off the trade names of a couple of dozen pain relievers without much effort. While there are certainly times a pain reliever is appropriate, more often than not, we mask problems with a pill when we should be paying attention to what the pain is telling us. Pain is good.

I think it’s important to embrace the pain. Now, before you label me as masochistic, understand that what I’m saying is that what I mean by embracing the pain has more to do with understanding what your body is telling you may be wrong rather than taking pleasure in hurting. Obviously, there’s a distinct difference and while I don’t enjoy pain and suffering at face value, going through these experiences have brought me closer to others and have transformed me into someone different, better I hope. Again, I don’t look forward to being miserable and I won’t allow these experiences to define who I am, I do see these bouts with hardship as opportunities. Being bitter gets you nowhere except perhaps a group of compadres who are equally miserable with whom you have nothing in common except some sour grapes that you can share with each other. Talk about a healthy relationship!

I have been giving some thought to this topic more because I know that even though the fun-ness I’m experiencing with the chemo currently isn’t at all pleasant, the transplant process will make this all look like a cake walk. In fact, when I was chatting with another vet who had been through the marrow transplant process. He said he had basically forgotten about two months of his treatment because he was medicated through much of it. He has a different condition and other complications, but he was pretty direct with me that it was rough and that even a couple of vets there didn’t survive the transplant process because they wouldn’t get out of bed. They just died. It was more sobering to hear from him about the road ahead of me than from the doctor. I did ask my doctor about this and she did acknowledge that medication was there for a reason. Rather telling, huh? On the other hand, she was direct as well in saying that your body knows when it’s ready and suddenly you feel good again. After having had a couple of blood transfusions during my first round of chemo, I totally get that. It was amazing what the difference a little bag of blood could do.

Having finished dose 6 of 6 of this course of chemo, I’m still feeling really good and full of energy. My appetite has been really strong and with a little help from the Mr. Coffee down the hall, I’m keeping regular and alert. Although there is coffee served at every meal I get, it’s really weak and I’m amazed at what an impact regular strength coffee is doing! I asked my mom bring in some nice coffee and a box of Girl Scout cookies from my apartment for the nurse’s station to show my appreciation.  We gotta take care of those who take care of us, right?  They are my superheroes after all!

My hem/onc doctor is rotating back to the Huntsman Cancer Institute and I’ll be meeting a new doc who is rotating to the VA tomorrow, so I’ll be able to get a better feel for when I can expect to be discharged. I’ll be getting my third of four stab-in-the-back (intrathecal) chemo treatments tomorrow.  I’m pleased that these haven’t been nearly as painful or uncomfortable as they sounded and they have actually taken care of the one symptom for the leukemia no one saw as such: double vision. Things are happening.

The weather is getting better and although I do have a window, my view only serves to make me want to get outside all the more.  Thankfully, I’ve been getting out of doors long enough to soak in some much needed sunshine and fresh air outside of the four walls of this hospital room.  Spring Fever is much more intense than I ever remember. No surprise there, I’m sure, but that’s hardly real pain and suffering, is it?

There’s no doubt I’ll have more to say on this subject as I progress through my treatment and I experience some really unpleasant things during the transplant procedure, but I bring it up now again because it’s something that is central to our human experience, something we have to learn to not just accept or tolerate, but embrace as natural and necessary and it’s not an easy thing to say when all you want to be is comfortably numb. For the time, I endeavor to be strong and optimistic and continue to thank you all for being my support. Time for my meds ;-)

Music of the day – I Get Knocked Down (But I Get Up Again) by Chumbawamba.
     I get knocked down
     But I get up again
     You're never going to keep me down
Seems appropriate, don’t you think?

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

Saturday, March 30, 2013

Our Mortal Frames

On Thursday, February 21, 2013, I sat across from two hematologists, who in turn, told me the really great news that I had leukemia. The first one was inclined to treat it over a few months, the second was adamant that I didn’t have those months and that I would be dead before I got through the outpatient tests. That’s a helluva horse pill to swallow. The rest of the story involves an extended stay at the other Club Med (not to be confused with the one that has the beautiful white beaches and the tropical backdrop). For the price of admission, I do get a private room and more pharmaceutical samples than the evening news advertises over the course of a week!

My sleep schedule has been realigned so that I have a lot of time for naps and when I’m not napping, say at 3:00 am, I think about all manner of profound things that you only think about in passing, in theory, or when you want to sound pretentious. But being handed a cancer diagnosis, you’re backed into that metaphysical corner and you face in real terms things like pain and suffering, why bad things happen to good people, and your own mortality. It didn’t take any time at all to figure out that none of this is my fault, but I’m going through it nonetheless.  I’m not unlike so many other people that just happen to get dealt a really bad hand in life’s game of Texas Hold ‘Em…and I don’t even have a good poker face!

Certainly, the most significant thing that I’ve mulled over is my mortality. When a doctor delivers the good news that your number is up should you elect to ignore the lab reports, it’s something you have to face with authentic seriousness.  It’s no longer something you can just toss about academically. The fact of my demise was something I had to face in real terms even though I didn’t have a single physical symptom that I knew of that fateful February afternoon.

My thoughts on faith and religion have evolved over time and while I won’t use this platform as a way to either proselytize or discredit someone else’s spiritual views, I will say that I am comfortable and at peace that I have lived a full and rewarding life. If I were to die tonight, it wouldn’t be a fearful departure from this earthly plane. That said, I have no reason to believe my time is up. My prognosis is very good based on my current physical condition and a number of other factors that my doctors and I have discussed.  I’m looking at a 70-80% cure rate and while that does leave a 20-30% possibility of not making it, I’m obviously focused on getting through this and moving on with a life full of a lot of happiness, friends, and accomplishments yet unknown. I got things to do, folks (and I have a lot of perfect moments to share with my OMT Sweepstakes winners – keep those cards and letters coming!).

I came across this quote attributed to Mark Twain today.  Some people indicate he didn’t say it, but knowing what I've read of him, it wouldn’t surprise me:

I do not fear death in view of the fact that I had been dead for billions and billions of years before I was born and had not suffered the slightest inconvenience from it.”

In a way, I feel a bit of an irreverent kindred spirit with Mark Twain and poked my own religious past in the eye yesterday in posting a Monty Python video from The Life of Brian featuring a chorus of whistling men being crucified and singing Always Look on the Bright Side of Life…on Good Friday no less. The only thing I emphasize there is my own feeling of absurdity in my situation. I mean, seriously, there’s just no way to reconcile cancer. A friend of mine (my daughter's father in-law actually) has used his own cancer to strengthen his faith and from everything I’ve read of his own journey, it has done exactly that. You can read through his ordeal here. I’ve discussed with others how they have coped and almost universally, each of us turns to that part of us that validates who we are. For some, obviously, we turn to God or a faith system; for others, we turn to that which has strengthened us throughout our lives – family, friends, and so on; and then there are others who just face it with good humor. Me? I’m probably some odd combination of all of them. We either trust that the medical science will bring us through or we don’t. We accept the well wishes, prayers, positive thoughts, and energy from others or we don’t. But at the end of it all, we are still but mortal beings and at some point, our lives have a finite end.

It’s not morbid to go there in your mind because you have to face the fact that whether it’s at the end of an illness, a traumatic injury, or advanced age, our bodies have a limited warranty…and precious few of us have the extended 100-year drive train deal! In talking with my hem/onc doctor, she pointed out that a century ago, my ripe old age of 50 was considered a rather full life. After all, Social Security didn’t arrive at the age of 62 as a retirement age because it was considered a comfortable point to leave the work force. It was the age the majority of people checked out when the system was implemented. Thankfully, medical science has advanced considerably and we’re all living a lot longer and she’s brilliant (even if she has the tendency to be a bit blunt), so I might get the extended warranty after all once I’m officially ‘cured,’ but even if I don’t, I’m grateful for the many good years I’ve lived.

Some of us men experience the official mid-life crisis where we buy something expensive that we think will make us feel young again or we feel the need to shack up with some pretty young thing to prove our virility. A cancer diagnosis has the amazing effect of trumping all that and forcing me to look not at proving anything now, but looking forward to validating the years now granted as a gift. As my grandfather used to always say before he died last June at 99,"Every day is a bonus!" Looking back with nostalgia is great and I am so glad to have the many happy memories and life lessons, but the greatest challenge and motivator is what lies ahead and it involves a much grander picture.

My music selection for the day comes from a classical piece by Johan Sibelius that has been adapted both as Finland’s unofficial national anthem Finlandia as well as a Unitarian hymn. Both the lyrics for the anthem as well as the hymn speak to me on different levels and like so many pieces of music, evoke tears.  This music video is exceptional in my eyes. The melody for the lyrics below starts at 5:33 in the video, but the whole piece is, in my eyes at least, exceptional.

A literal translation of the anthem's lyrics would be:

O, Finland, behold, your day is dawning,The threat of night has been banished away,And the lark of morning in the brightness sings,As though the very firmament would sing.The powers of the night are vanquished by the morning light,Your day is dawning, O land of birth.

O, rise, Finland, raise up highYour head, wreathed with great memories.O, rise, Finland, you showed to the worldThat you drove away the slavery,
And that you did not bend under oppression,Your day has come, O land of birth.

The Unitarian Universalist hymn lyrics

This is my song, oh God of all the nations,A song of peace for lands afar and mine.This is my home, the country where my heart is;Here are my hopes, my dreams, my holy shrine;But other hearts in other lands are beatingWith hopes and dreams as true and high as mine
My country's skies are bluer than the ocean,And sunlight beams on clover leaf and pine.But other lands have sunlight too and clover,And skies are everywhere as blue as mine.This is my song, thou God of all the nations;A song of peace for their land and for mine.

 As always, be well, stay strong, and much love to you all :)

Friday, March 29, 2013

Always Look on the Bright Side of Life

I have been pretty vocal about my role in my own healing process. The more I experience and the more I read of other’s experiences, I become progressively more convinced that this is true. I don’t think it’s rocket science to grasp that some stress is good to get us to move outside of our comfort zones and toward something positive; too much stress, of course, produces some definite negative consequences. In my case, I got high blood pressure, acid reflux, and I was just plain unhappy. I’m beginning to wonder that as a result of the years I was in such an unhappy place, the leukemia I’m experiencing now was my body’s ultimate rebellion or outright surrender. There is certainly some conjecture about that, of course, but again, I can't help but wonder.  I came across this as I was reading this morning:

Increasingly, in the medical press, articles are being published about the high cost of the negative emotions.  Cancer, in particular, has been connected to intensive states of grief or anger or fear. It makes little sense to suppose that emotions exact only penalties and confer no benefits … creativity, the will to live, hope, faith, and love have biochemical significance and contribute strongly to healing and to well-being.  The positive emotions are life-giving experiences.
          - Norman Cousins, Anatomy of an Illness

Since moving home to Utah, working at a job I really enjoy and where I am appreciated, being around family, living in a place where I’m more acclimated, I’ve found myself much happier and aside from the obvious, healthier.  I haven’t required high blood pressure medication and haven’t experienced the chronic acid reflux that has plagued me for many years. My response to the chemotherapy has been  very good and from everything I’ve been told, my prognosis is also optimistic. In short, I have a positive outlook and I have much to be grateful for, things I’ve also been pretty vocal about. But it does bear repeating.

And it bears repeating for all of us, seriously. While there are some who look forward to another incarnation and others who hope in an afterlife, the fact of the matter is that this life we’re living here and now is the only one we can truly be certain. No one, to the best of my knowledge, has come back with a slide show of the hereafter! The point being is simply that living a life, a full life, now is not just a part of the fabled “American Dream,” but rather something we need to pursue. It’s part of our physical as well as mental health. It's even constitutional!

Being around people that build you up rather than sucking the life out of you, finding the vocation that fulfills you rather than bleeding your soul, and participating in activities that make you feel complete are things that are imperative, not just things we should tick off on a bucket list. They have to be part of our daily lives. True, we all have circumstances that may prevent us from making immediate changes, but if you’ve surrendered to an existence of habit and becoming comfortably numb on the weekends to deaden the dread of the workaday week, what kind of life is that? I’ve written before that “normal” should never be the goal, but rather you have to redefine normal to be exciting and revitalizing. You can do that, right? And again, don’t wait until you’re lying flat on your back and unable to make the changes in your life necessary to be happy. Do it today!

A good friend of mine owns a number of day spas in the TwinCities. Her attitude toward business has made her not only a successful businesswoman, it has made her an absolute delight to be around.  Suffice it to say, the attitude and success are inextricably entwined.  Her corporatecreed is, “…knowing that right thoughts and right efforts ultimately bringabout the right results.” It’s that kind of attitude I have adopted personally and if I’m ever even a fraction as successful as she is, I’ll be very well off.

But her success isn’t surprising at all considering her corporate credo and neither is the accelerated healing because of a personal attitude that mirrors that positive outlook. It’s the kind of thinking that any of us can adopt for any reason for any occasion in spite of any negative circumstance. Sure, there’s reality and I’m not some Pollyanna and I have no desire to be a martyr, but neither will I be a prisoner to negativity…and I hope you won’t either.

I had a good conversation with a guy named Dennis today. At the suggestion of the hospital social worker, he stopped by during my first round of chemo to fill me in on some of his experiences when he was in Seattle for his bone marrow transplant a few years back. He stopped in for purely social reasons today and it was good to see that he’s doing well and thriving and maintaining that edge of attitude that keeps us both smiling. Even though he's in his 60s, he typically wears a t-shirt that brings a grin.  It gives me all the more hope that not only will I be OK, I will thrive when I’m through my treatment. I recognize, too, that the road ahead of me is not going to be an easy one. In fact, it’ll be damned hard and involve a lot of discomfort and sickness, the likes of which I’ve never seen and wouldn’t wish on anyone, but it’s a road I can walk and complete. It’s also one that I will be able to help someone else down at some point, someone who will need a bit of help to take the next step.

As always, I thank you all for helping me take the next step and be positive throughout this rather long and tedious journey. As the button my friends and high school classmates, Jeff & Jane gave me on my table in front of me says, “No one fights alone.” I believe that!

Now, for something completely different. Fair warning, if you’re at all sensitive to religious sensibilities, you may not want to click on the video.  Monty Python’s Life of Brian is a parody and not for everyone. I don’t want to offend, but the words to the song, Always Look on the Bright Side of Life are what I’m smiling at today. I’m a die-hard Python fan…so with that disclaimer, I offer my deepest admiration and genuine gratitude to all of you who walk along with me...and if you enjoy Monty Python, sing it with me!

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

Thursday, March 28, 2013


Denial is not just that river in Egypt.  Denial is one of the steps in grieving a loss and as much as I wanted to deny life as I knew it came to an abrupt end, it wasn’t. It’s not a permanent change, of course, but for the foreseeable future, my ‘routine’ is anything but. And to be sure, there are some things I will just have to be mindful of for the rest of my life, many of which I don’t know about yet. Considering my rather heretofore happy-go-lucky approach to my health might have landed me in the morgue instead of the hospital, I’ll have to be more attentive to the little things and actually see a doctor more frequently rather than shrugging things off.

I think I’ve been in a bit of denial about this whole leukemia thing even though I’ve certainly been in some serious discomfort thanks to the chemo. On the one hand, the only thing that has been an indicator of my condition has been a series of lab reports; on the other, not believing them and continuing on as if nothing were wrong would be to literally put my life in peril. It’s hard to reconcile the two, but at the end of the day, I can be grateful that some pathologist was insistent and that she made her case to an attentive hematologist, who in turn, laid out the facts before me in such a way that cut past the bravado and got me into treatment right away. There’s really no way to know just how much time I had before things got really ugly and I don’t even want to conjecture as much, yet…I really would rather be doing the routine things that we all take for granted without a surgical mask and with a full head of hair and all those things you just don’t give a second thought to.

I finally gave in to the hair loss.  It had been coming out in clumps and then it just stopped.  I had patchy areas that made me really look awful, so I figured I’d clip it all down to about ¼”, but when I put on knit caps, it was really uncomfortable. It pushed those stubbly hairs back and it bordered on painful, so yesterday morning, I took my razor into the shower with me and started shaving it all down clean.  I didn’t realize just how much hair I still had, but once I finished up, it was so much more comfortable to put on a cap, especially at night. I can’t say my appearance is that much better, but I’m not uncomfortable any longer. While my hair was falling out, I could rub my face and see clumps of whiskers fall away, so I did the same thing and shaved my face for the last time and I suspect I won’t need to buy a razor blade for some months to come. The rest of my body hair is just kind of doing its own thing.  I suspect that it may or may not fall out at this point, but since I’m getting repeat rounds of chemo, I think it’s fair to say that we’ll see another round of hair loss.  It’s not as uncomfortable, but just plain weird.  It’s not as obvious as head hair though, so I don’t really care as long as it’s not uncomfortable.  I’ve only shaved my legs down as a cyclist a couple of times and I there’s obviously no competitive edge – real or imagined – to shaving down here, so I don’t care to invest the time.

I’ve said many times how overwhelmed I have been by the outpouring of support and love, but I was totally surprised by my brother’s solidarity in shaving his head yesterday as well. It’s not something I would have suggested and he actually asked if it would be OK prior to his putting his own head on the chopping block, so to speak. He and my sister in-law, Tara, brought me a t-shirt and a coffee mug from their cruise (and yes, I am going to go back to sea with them after this is all said and done!). But what surprised me was the stirring tribute on his facebook page (note: I am not dying or going anywhere, but I’m nonetheless justifiably touched!).

There are a lot of inevitabilities in this life, most of which we think we know, but take us by surprise. We will all face crises at some point, whether it’s with someone else or ourselves. This crisis in my own life has taught me so much already and while I’m not keen on some of the lessons, I can certainly expect that I will come across many more before my time in the hospital is over. I can only hope that I continue to meet these lessons with the optimism and grace that I’ve been able to thus far. I honestly don’t feel like I have it together some days and my patience, as you may have picked up on, grows rather short some days. In the meantime, I’m trying to smile and continue to keep everyone, most importantly myself, smiling. On the flip side, we’ll all face successes, which try our character as strongly as crises do. While a personal disaster will test our personal courage and have the unique capability of bringing out the best in us, successes have the unwitting effect of testing our integrity. Failing that test is far more painful than falling down from an injury as those unseen wounds will continue to fester.

My hope is that you realize enough success to make you happy and when your successes multiply, that your character meets the challenge…and when you find yourself battling your own crisis that you find the courage to beat the hell out of it!

Music du jour: U2’s Beautiful Day.

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

Wednesday, March 27, 2013

The Waiting Game - Fending off the feeling of Helplessness

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

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

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

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

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

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

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

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

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

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

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

Tuesday, March 26, 2013

Round 2

Yesterday marked the official beginning of round 2. I got to be on the receiving end of a large needle into my spinal cord, but thankfully, my hem/onc doc is really good at this particular kind of intrathecal chemo and with the help of a little happy juice, felt no discomfort at all. She has earned my trust with some of these less than pleasant procedures. And I got to watch her go toe-to-toe with another hem/onc doctor from the Huntsman. I know she’s got my back…even if she’s putting a needle in it. It’s not the same thing as being stabbed in the back although it sure looks like it! I got the ok to floss my teeth and shave until my numbers dip again. Since my hair hasn’t fallen completely out, I trimmed it down, but it’s uncomfortable to wear a knit cap. It has this way of pushing the hair stubble against the grain as the cap is settling in. I’d rather wear a knit cap while sleeping instead of a ball cap since there’s the brim, of course, but hey, I’m working through the fun.  My whiskers had been falling out as well, but since things have come to a halt on the deforestation, I shaved them all off and I suspect I won’t have to pull out a razor for some months to come.

Today, I got a heavier dose of the Cyterabine. I get a concentrated dose every 12 hours and then I’m free of the IV pole. The goal here is to drive my white count back down to nutropenic levels and then when my neutrophils recover, then I go home until either the bone marrow donor is ready or my next 28-day cycle starts.  So, it really comes down to how my body responds to the chemo and recovers. Suffice it to say, I am hoping that I’m back in my own digs VERY soon. Yeah, I do like the people here and the food is pretty good, but I’m kinda partial to my own four walls instead of these institutional ones.

My transplant application has been forwarded to Washington, DC and my name is now officially on the radar in Seattle, so it’s now the official military “hurry up and wait” game. From my standpoint, I just want this over and done and since I’m pretty white bread Caucasian, my wait time will probably not be too long, but I’ve been advised that it could be a matter of months, so I’m weighing the realistic with the part of me that just wants this to be done.

I had the same nurse with the twisted sense of humor today and that kept me smiling. She had an assistant whom she was training, whom I found had spent some time in France, so it looks like I’ll have someone with whom I can practice my fragmented French. Language is something you remember like riding a bike, but if you don’t use it, you get rusty.

The quiet, boring day is a good one, medically, but of course I’m itchin’ to be productive and involved. We’ll get there and thankfully, I’m able to work with my company to stay involved. Thankfully, I have some things that I can work on and stay a part of things.

That tonight’s entry is rather short is a good thing. You can be sure that something will arise to keep things interesting, but for today, it’s mercifully boring.  And that’s a good thing! Today's music video is another throwback to the 80s when music videos were in their infancy. Hold On by Kansas.

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

Monday, March 25, 2013

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!

Sunday, March 24, 2013

Mental Gymnastics

I have the great good fortune of an incredible support network. I’ve said it many times not because I’m trying to convince myself of anything, but because it’s true.  And for that, I continue to be grateful and truly humbled.  I can’t tell you how much it means and I honestly hope you don’t have to be in my position to find out who your real friends are.  I’m amazed at how many real friends I do have…and again, many more acquaintances who have stepped up to the plate and been absolutely extraordinary in the face of my challenges. I’ve used this medium as my own therapy to talk things out, to work out the details, to come to grips with the reality of a long-term, to-the-death illness that I can’t even see except through lab reports and the expertise of the many, many medical artists who are manning my very own ‘situation room.’ That’s at least what I imagine in military terms is happening. On a micro-scale, that is exactly what is happening.

On a macro scale, I have my ups and downs and you see my life’s lessons I’m pulling away from this journey.  Everything I’ve written has been entirely true although some of what I write tends to be subjective. What I don’t typically talk about is how I feel about what’s happening, mostly because men typically don’t do that very well and to some extent it has the possibility to come across as whiny. I’ve been trained extraordinarily well to be strong in the face of adversity, to be stoic in my discomfort, and to compartmentalize feelings from reality so I can do my job.  That is tremendously important as a pilot, but I’m not in a cockpit right now. I work from wherever I can, whether it’s in an office, from my home, or from a hospital bed.  Perhaps that’s the beauty of the 21st century and perhaps it’s a way to keep my mind active and sharp when Newtonian physics conspire to keep me immobile: ‘a body at rest tends to stay at rest…’ But feelings are breaching the watertight integrity of their compartments and I’m battling the reality of cancer. As much as I endeavor to be positive, cheerful, and just a bit of a wise-ass, I struggle with the new normal. I struggle with clumps of hair falling out and while I’ve never been nor will I ever be a Calvin Klein underwear model, there’s that part of me that cringes at the sickly looking guy in the mirror losing hair, muscle tone, and weight. It’s not just a little dismaying. It’s one thing to know in your head that this stuff is supposed to happen; it’s another entirely to watch it happen to yourself in relatively short order. Walking around the block with a surgical mask has the unwitting effect of making you invisible.  People make eye contact just long enough to register alarm and look away. Funny though, the mask does not seem to deter panhandlers!

I can remind myself of all the things I wrote, of all the things I knew were going to happen, of all the things I have that others don’t, yet there just aren’t words that adequately describe the feelings that race through my mind.  I’ve seen YouTube videos of people dealing with cancer, the very things I’m facing and the struggles they’re facing. I can take some solace in the fact that I’m not the first or last to go through this and there has been great compassion as I’ve said many times. I’ll also say again, I don’t throw pity parties, but I felt I should write about this today to put the reality of leukemia out there and to re-state this is a long-term thing that requires endurance on my part as well as those who hold me up when I get weary.

I’ve learned an awful lot about leukemia where I’d rather remain blissfully ignorant, but in a sense, I’m grateful my doctors haven’t allowed me to be passive about my treatment.  More than peppering me with questions about delightful details like stool consistency and the kind of discomfort or pain I’m feeling, they’ve been very direct in interactive discussion about the course of treatment, sometimes uncomfortably so, but truth be told, I can’t imagine trying to navigate treatment without being informed and involved.

So, the past few days at home have been a good respite from the physical exertion of the hospital stay. Tomorrow, I start a consolidation round of chemo to keep the leukemia in check while we await a bone marrow donor.  It could happen quickly, or it could stretch out a few months. Being the white bread Caucasian that I am, it may not take as long as someone who is of mixed or complicated ethnic descent. While I don’t harbor any unrealistic expectations about this happening quickly, I do want to put this behind me and get back to life as I knew it.  Not 'normal,' mind you, but a life less restricted and one not defined by a diagnosis. I have things I have to do.
Music du jour - Don't Give up (You Are Loved) by Josh Groban.

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


Saturday, March 23, 2013

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,

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.

Friday, March 22, 2013

A Body at Rest...

“A body at rest tends to remain at rest unless acted upon by an outside force” or so Sir Isaac Newton would have us believe. I’ve found that a hospital bed will have pretty much the same effect on a body – my body in this case – as well.  The doctors were pretty insistent that I get out of bed and take my meals in the chair adjacent to the bed. There are a lot of good reasons for that including the likelihood that I could develop pneumonia or blood clots by staying in bed for an extended amount of time. I found that getting out of bed, even for a short amount of time when I was feeling my worst, was a real chore mentally as well as physically. There were a few days it just felt too damned hard to do anything. The power of gravity and that first law of motion was something I had to will myself to overcome, even if that trip to the chair just a few feet away was the goal. It didn’t matter if I slept in that chair, I had to move.

I find that the stakes may have gotten a little bigger now that I’m home for a few days, but that feeling of lethargy is knocking at my door under the guise of recuperation. Physically, I am taking things one step at a time, but mentally, there’s the temptation to just do nothing. If you’ve picked up anything from my writing to-date, you’ll know that I have a craving to keep mentally active and engaged, so this is a real battle. To keep myself accountable, I’m doing what I can to contribute at work and even stopped by to get some writing work that I can do remotely.  The yellow surgical mask combined with my cap gave me a suspicious appearance for just a moment until the few people who were still in the office when I stopped by recognized me. It was nice to see the people that I work with and to keep the mind working.

Having had one of my daughters here this past week or so to help out was really nice as well. She knew the right distance to keep to help when I needed it and to allow me privacy when I needed it.  She was the right person for the right time. We all should be so fortunate to have such people in our lives. Thank you, Dassi! I found out yesterday that my oldest son will be able to come out and help while I’m undergoing the bone marrow transplant in Seattle. More than the help, I’m looking forward to cementing our relationship as adults. Most of my life, I’ve been traveling or living apart from family and if there’s one thing that this diagnosis has given me is some one-on-one time with everyone.

I remember doing a little exercise in goal-setting that had a question: if you knew today that you would die in six months, how would you spend your final time on this earth (assuming all final arrangements had been taken care of)? The point, of course, was to get you to think about the truly important things in your life and then do them. In a real sense, a leukemia diagnosis has forced me and those around me to refocus on some things.  Life comes to a stop and you don’t have any choice but to pay attention. It is the ultimate outside force to get you from inaction. This is yet another one of those cautionary tales of sorts to give you the opportunity for a little introspection without the benefit of a doctor reading an unpleasant pathology report to you.

Just like it’s far easier to look for a job when you have one, it’s far easier to be introspective when you have options in front of you than when you’re staring at the ceiling of a hospital room. So, take it for what it’s worth. Take some time and find what it is in your life that will get you moving in the direction you want to be going rather than remaining in the rut you’ve carefully worn for yourself.

I monitor my blood pressure daily and now I’m adding temperature and weight to the mix to make sure I’m not treading into territory that would have me rushing to the ER. I did go back up to the VA for a routine blood test this morning and thankfully, the numbers are still trending in the right direction. I’ll be back on Monday for more chemo.  It may either be an outpatient spinal variety (insert cringe here) and it may also be a shorter four-day stay for some “consolidation chemo” to keep things in check until my donor has been identified and I head to the great Northwest for the next chapter in this adventure.

Thanks again to you all for your continued support and close air support. We’re winning this war! You are the “outside force.”

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

Thursday, March 21, 2013

It is what it is…but it’s not where I want it to be

It is what it is. It’s something I find myself saying a lot, especially in situations where it looks like I really can’t do anything about it. But it has unfortunately become something that a lot of us – myself included, of course – say when it’s too easy to shrug our shoulders and move on instead of finding the answer. Lindsay, one of my med techs at the VA amended that little ditty the other day and it stuck with me. She said, “It is what it is, but it’s not where I want it to be” in completing a thought of mine. You see, there’s this little thing called chemo brain, which is a real thing, by the way, that is akin to what we all euphemistically call ‘senior moments,’ ‘brain farts,’ or whatever. You get the picture.  So, she asked how I was doing that day and in my eternally optimistic way, said I’m doing ok even though I was really not feeling so terribly swell and catching on, she said what we all do, “It is what it is.” I responded, “Yeah but…” and she completed my thought, “…but it’s not where you want it to be.” That’s when the light bulb went on for me and that little boost actually made me feel just a bit better.

My hair is coming out in massive clumps and my pillow looks like a barber’s floor. It’s not that this is an unexpected surprise, but it’s still a bit dismaying nonetheless.  I don’t know that I want to take the clippers and make a bigger mess.  I’m kind of liking the leisurely shower method of hair deforestation. Yeah, I’ll be buying a bottle of drain cleaner or two to clear up the mess, but it’s a small price to pay. After all, I won’t be buying hair or shaving products for a while. Weigh the pros and cons on that one…ok, I’d rather buy the stuff than look like a sickly ol’ guy. I’m at the in-between stage where I look like hell, but feel ok. When it all falls out, I’ll look like a bona fide cancer patient, but right now, let’s just say, I won’t be posting any pictures.  I could scare small children and pass for a zombie if I had the right mannerisms. It’s another ‘it is what it is’ kind of thing for me. It’s happening and it’s not something I can do anything about other than accelerate the process.  But as I wander through my own thoughts, I find there are a probably a lot of things that can add that ‘but it’s not where I want it to be’ part that I can do something about it.

The thing is, most of those 'it is what it is' things are insidious little details that when piled up, turn into a pattern of apathy or laziness. It’s not who I am, yet those little shrugs of the shoulders, those decisions for what seem like pettiness end up becoming piles of stuff that just never get done or end up taking extra time later when I’d rather be doing something more fun or productive. I felt that way this morning as I was wading through the prodigious pile of mail that had arrived during my hospital stay.  While I had scheduled payments and taken care of some things ahead of time, the paper trail took some time to go through and find out what was important and what wasn’t.  It took the better part of the morning to get through it all and I still have a few piles of stuff that I just need to find a place for. Maybe it’s just my own version of spring cleaning that needs to happen. Now, before you wag your finger at me for even thinking about overexerting myself in a flash of white tornado fury to clean, rest easy. I’m still in recuperation mode. Besides, when it’s officially the first day of spring and there is snow flying, “spring cleaning” just doesn’t quite seem right. This here ground hog is waiting for the end of winter.

I’m finding, too, that the ‘it is what it is’ is an attitude. The same med tech that  inspired this little post loaned me a little book called Anatomy of an Illness that I started last night. I can see that the gist of the book is the role of the patient in healing. The author’s optimism, laughter, and positive attitude was the key to his healing of a life-threatening illness.  I can’t cite the details as I’m just beginning, but it struck me that the ‘it is what it is’ is akin to throwing in the towel and just letting things happen.  If you’ve read any of my posts to date, you’ll know that my stance has always been to fight this leukemia with positive attitude, optimism, and a dash of crass humor. It’s not because of a book, not because of some idealism, but it’s just who I am; and why should I languish as a victim, even though I had nothing to do with this? I’m convinced that half of my healing is due to the talent of the medical staff and the alchemy of pharmaceuticals that are being prescribed, but that other half is all the soft stuff – your continued prayers, positive ju-ju of all varieties, and support that all contribute to my own attitude. Hey, I’m home nearly a week early.  Don’t ever doubt that what you do has an impact on others. I don’t!

I continue to be grateful for each and every one of you. Yeah, it is what it is…but it’s not where I want it to be. And together we’ll move it to a better place!
I wanted to find the 'official' video to Journey's Don' Stop Believin', but there really isn't one. I don't like live really. Journey was one of my favorite bands. When this hit came out back in 1981 when I was in high school, music videos were in their infancy and MTV actually showed music videos full time. Anyway, it's my chanson du jour. Sois sage et appréciez!

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

Wednesday, March 20, 2013

Making history or histrionics?

“Join the Navy, see the world,” was one of the advertising campaigns for the US Navy when I received my appointment to Annapolis back in 1981. Over the subsequent eighteen years, I would visit 35 countries and receive orders that would take me to 14 commands where I would meet thousands of people, many who became acquaintances, and a good number who I counted as friends. After leaving active duty, I’ve lived in three major metropolitan areas and because of volunteer work and my cycling, I’ve only added to that number. Throughout the years, some of those friendships wax and wane of course, but thanks to social media, I, like so many others, have reconnected with those acquaintances and friends as well as alumni from high school and college. The numbers are amazing when you think about it. But, even there, we all recognize that we have “facebook friends” and “real friends.” In my case, the vast majority really are people I know and interact with from time to time – on-line, by phone, and in person.

I can tell you that’s true from being on the receiving end of a flood of so much good will, it’s hard to wrap my head around it all. Now, that good will has been more than a simple “like” on a posting. Take for example the day I left the hospital.  I arrived with a gym bag of three sets of sweats and enough underwear and sleeveless t-shirts to last me a week. I had a toiletry bag as well. I brought my laptop bag for business and I had a sac with some crossword puzzle books and a novel to read.  When  I left, I had two potted plants, six (6) grocery bags FULL of snacks and goodies, a really nice little treasure chest full of Starbucks and Godiva, three books, and more.  Most of this came by mail from east and west coast and by visitors, some of which I don’t know all that well, and one who drove a full day from Southern California. If that’s not love and true friendship, I can’t tell you what is. But there’s more.

The Houston contingent of my
fan club I didn't know I had!
I felt like I had my own cheering section from the Philippines when I saw a video posted to my timeline from one person I knew as a facebook friend, never having met in person. There was a group of people whom I’d never met wishing me well.  And then there’s another facebook friend who organized a blood / bone marrow donation drive. I was utterly delighted to see my cycling buddies from Team OC on a video. Social media kicked into high gear and people did something.  I’m just one person who happened to get a bad deal and I got the kind of overwhelming support that is genuinely humbling.  Then there are the people that I know here locally that have rallied around me. The nurse’s station has had to play the role of traffic cop on occasion, but they don’t seem to complain about it. I’ve had a steady stream of visitors that I am certain contributed to my early release.  Something tells me the nurses know the score on that one!

It really doesn’t matter if you think Facebook is the great time-suck of our time. I’m here to tell you that, in my case at least, it has been a tool to let people know in my own way what was going on without issuing an invitation to a private pity party and that message went, well...viral in a way. The people that mattered responded and I, for one, am so very grateful to have spread such a wide net in my life of friends that, whether they’re into the social media thing or not, elected to hang with me in this tough time.  You can be sure that where I’m able, I will continue to keep in touch and build relationships. The dividends are just too high not to invest! And I’ll be there where I can. Facebook, LinkedIn, and other networks are just platforms, not substitutes; but they are often the springboard to doing something tangible and making a real, tangible difference. Just like any tool, it can be a waste of time or a springboard for something great. It’s what we make of it. Look no further than the wasteland of “reality TV” and then switch the channel to something really phenomenal that transports you to another place and time, educates you, or inspires you to do something really meaningful. It all comes back to us as individuals. We can either use technology as a way to numb us from reality like any other illicit drug or we can harness it to be great.

If the few examples I cited above for this one person with a cancer diagnosis can inspire a few people, imagine what you can do to inspire yourself … and who knows how many others.  If my small network of family, friends, acquaintances, and on-line buddies can make a few things happen, those of you with substantial influence in the social media world have incredible potential to make positive changes far beyond commercial gain. Think about it. How many people in your network do you know? More importantly, how many people in your network do you influence for good? Use a little math and you quite literally have the power to change history…or you can be satisfied to like the kitten pictures and fun videos.  I know, I’m the pot calling the kettle black some days, but using a little critical thought, a bit of fact-checking, and harnessing that inner drive and passion we’re all so stoked about during interviews, there is no limit to what you can do.

So, tell me, how are you going to harness that power in your fingertips? Will you make history or histrionics?

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