The Fellowship of Suffering

My last month on active duty in the US Navy was a very quiet uneventful one…except the night I decided to find something different to do and on one cold January evening the very day before I was due to be discharged, I decided to go ice skating. The rink was practically empty and I enjoyed myself. I’m not an accomplished skater – I’m merely passable, capable of holding my own without looking too much like the one waving his arms about to maintain some sort of balance. Well, that wonderful evening, I was standing near the entrance to the rink when the skates went out from underneath me and I was flat on my back. I would find out that the fall had actually broken my leg, albeit a rather minor break. Because the fracture was on the outside, I was somehow able to walk on the leg, leading me to believe it was just a sprained ankle. You can imagine the chagrined look on the corpsmen’s faces when they realized they had me walking on a broken leg. Suffice it to say, they got me off my feet in no time and wanted to put me in a cast. Driving a manual transmission car with my toes was a challenge, but I was determined!

I got over the novelty of the cast pretty quickly and was none too disappointed when the day came to get it removed. I remember sitting in a waiting room with a collection of other walking wounded people awaiting their own removal of multi-colored casts. The waiting room was quiet enough to hear a pin drop. The silence was broken by a good ol’ boy from Tennessee whom we would all find out had in his young life, sported casts on many places on his rather large frame.

“Boy, but don’ it itch!”

We all let out variations of bemused sighs, all nodding in agreement. Everyone began sharing how long they had worn their cast and how they managed to get injured. The place practically turned into a religious service, everyone bearing testimony on their suffering. Can I get an ‘amen,’ brother? When I lived in Minnesota, there was a common suffering of the intensely cold winters. If it got above 0° any time in the month of January, it was cause for celebration and when it crested 15°, I, no kidding, saw shorts. When you live in Minnesota, you revel in complaining about the weather. It’s just what you do.  Once I put the frigid temperatures behind me in living in Southern California, I did more than store my lovely Norwegian sweaters with cedar blocks in plastic boxes under my bed never to be worn in the eternally warm weather. Arriving in November, I was greeted by shivering Californians wearing fur-lined parkas in the ‘new’ frigid: 50°(yes, really)! In SoCal, the new fellowship of suffering was the hellish traffic. Just as in Minnesota, we all acknowledged the extreme weather, in SoCal, we all acknowledged the traffic and once again, we reveled in how bad it was. It required no explanation, perhaps just how much time we spent in it. Now that I’ve arrived in Utah, it doesn’t get really all that cold and the traffic can’t compare to Southern California, I laugh out loud at anyone who complains at either!

My new fellowship of suffering seems to come rather often now with other people who are suffering from chronic illnesses and most especially with other cancer survivors. I spend quite a lot of time at the VA Hospital getting routine blood draws and because I’m there so much, staffs in many places throughout the hospital know me by name. I still have my PICC line in, so I don’t get stuck with a needle for my lab tests this round – I know I heard an “amen” from the back of the room – so I go to the Ambulatory Medicine Unit (AMU). The AMU has a number of rooms with a few recliners and IV poles. People who get outpatient chemotherapy, blood products, or infusions for other chronic conditions can pull up to the pump, get serviced (oil changed, windshield squeegeed, and a fragrance of their choice all complimentary of course) and be on their way. For those of us with PICC lines or ports, it happens a bit faster.  It’s as easy as unscrewing a cap and connecting the IV. No muss, no fuss, no pain – we all win…and we get an extra punch on our frequent customer card along with a cup of coffee and a packet of graham crackers. What a deal!

This morning, the nurse took all of about 2 minutes to come in and take a blood sample from my PICC line and the rest of our time, we spent just chatting. She flushed out my PICC line and it struck me that it was not fair that I gave blood and she just gave me water…isn’t blood thicker than water? Yes it is, but that’s the arrangement. So, she took my test tube sample off with a smile (and left no graham crackers) for the lab to run their chemistry and count and while I was waiting for the results, I got two roommates. And just like the good ol’ boy from Tennessee, one of us started talking and we all just laughed through our own shared suffering of sorts. We were all veterans and had long-term conditions – one had Parkinson’s and the other had rheumatoid arthritis. My numbers came back really good and I left with new friends and a bit of a spring in my step.

The nurse "flushing" my PICC line with a saline solution.
I do this at home every morning, but she's getting ready to
draw blood and then change the dressing around where
the actual catheter enters my the vein in my arm. You can see
the greenish donut where the purple line disappears. This
line goes into the vein and it feeds through my chest to just
above my heart. Pretty cool, huh? Well, it keeps me from
getting needles in me on a regular basis!

I’ve found that as much as I don’t ever want cancer or illness to be the first thing about me, there are times I need to be able to talk to people who know what I’m going through. It’s far easier to talk with two complete strangers about what I’m working through than my loved ones. I think that’s mostly due to the fact that I just don’t want the relationship to change. I don’t want them to treat me differently. I want and need that stability that regardless of the awful things that I’m walking through, for the important people to be there, to be unchanged is critical.  My life, my world may be shaking underneath, but the ones who are my foundation stand in front of me, holding me steady as my feet wobble from the quake. I can’t make them understand what it is that makes me unsteady the same way they can relate to heavy traffic or nasty weather…and I guess the truth is, I wouldn’t want anyone with whom I’m depending on to have to empathize fully because I wouldn’t want anyone else to go through what I am.

That said, I really do want to be able to be there for others who find themselves in the dark with a new cancer diagnosis and unaware of what to do next. I’m not a medical expert and I don’t want to be a source in that department, but I know those who have meant the most to me have given me the simplest of human needs – a simple touch by holding my hand when I hurt, hugged me when I felt unattractive as my hair thinned and fell out, smiled at and with me or told me jokes when I just wanted to cry, brought me a cup of real coffee when the chemo made breakfast smell putrid…and so on. Every little message of love and support pushed me one day closer to healing and whatever I can do along the way and after the only thing left from my cancer experience is PICC line scars, then that’s what I do.

That’s what the fellowship of suffering grants – authentic empathy and a responsibility to ease other’s pain. It’s not a group I had endeavored to join, but as I’m wearing the accoutrement of its membership and with so much pain around me, it feels right to smile and laugh with those who hurt.  Funny thing happens in that process – I make new friends…and I find myself feeling better.

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

Today’s music – a classic from Bill Withers in 1973: Lean on Me

Sometimes in our lives
We all have pain
We all have sorrow
But if we are wise
We know that there's
Always tomorrow

Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on

Please swallow your pride
If I have things
You need to borrow
For no one can fill
Those of your needs
That you won't let show

You just call on me brother
When you need a hand
We all need somebody to lean on
I just might have a problem
That you'll understand
We all need somebody to lean on

 

Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on

You just call on me brother
When you need a hand
We all need somebody to lean on
I just might have a problem
That you'll understand
We all need somebody to lean on

If there is a load
You have to bear
That you can't carry
I'm right up the road
I'll share your load
If you just call me

Call me
If you need a friend
(Call me)

Fear Not

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

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

Insert discussion between mom and doctor here. 

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

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

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

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

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

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

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

So…stop it!

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

Music for today - These Times by Safetysuit

 

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

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

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

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

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

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

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

Undaunted Courage

Every one of us has to face challenges from time to time. Some of them are personal, some are physical, some are moral, but they stir within us something that is greater than ourselves. One of the challenges I’m most proud of is completing the AIDS LifeCycle – an event raising money to care for people living with HIV and AIDS and the service organizations that care for them.  It involved training far beyond my then 49 year-old frame was prepared for. I thought I was at least a decent cyclist until I came across some of those nasty damned hills in Orange County. I had some days where I felt like I just had to pull over and throw the bicycle off the side of the road and call it quits, but I had a whole team-load of people encouraging me, cajoling me, prodding me, and teasing me to keep going. After all, I was training for an event that wasn’t about me.

 

So, I gave up what I had of a social life and trained on Saturdays and as the event got closer, other days of the week as well. I put up with the blowing sand near Solana Beach and saved a bundle on that microdermabrasion treatment I wasn’t considering, I learned how to change flat tires, and I learned a lot of humility and life lessons along the way. I won’t say that I didn’t have just a little trepidation about doing this 545-mile ride, but I was determined. I had supporters, both financial and physical that made it possible and I had beneficiaries, some I’d visited in training, some I’d heard about as a teammate carried their names on military-style dog tags around his neck, and some I’d met on the side of the road thanking us for remembering their loved ones.  It was profoundly moving because it wasn’t just an ego investment in riding my bicycle a long distance. It forced me to take my eyes off my poor achin’ bod and keep these very real people ever before me. I was inspired, I was moved to tears many times, and I was never the same afterward. My very much daunted and intimidated self was forever changed in the course of a week.

 

I had registered to ride this same event this year and had I not been saddled with a bit of a medical setback at the Salt Lake City VA with an IV pole, would have crossed the line at the Los Angeles VA amid the cheers of the thronging multitude.  No, really…it is a crowd that will make you cry no matter how macho you think you are. I followed my teammates via Facebook as they rode down the coast with pride and envy. They really became an extended family of sorts and I broke out my orange beanie in solidarity with Team OC this week. I can’t say that I’ll have the strength to ride in 2014, but I’m going to do my best to see them off or greet them at the finish line next year…and depending on how my health is the following year, I’ll be looking at making my way down the coast in 2015!

Despite the physical and mental demands of something like this, I did it! (Read about it here if you like). I overcame my doubts, my physical limitations and stretched beyond. In the process, I changed. It made me into someone else. I had someone equate the event to a religious experience, and I guess in a way it was. I think that any major challenge will touch your spirit in some way and you have to rise to that occasion or be destined to repeat the lesson some other way. Suffice it to say, a cancer diagnosis is one of those things that steers your eyes at things that you wouldn’t otherwise look. I’ve written about a number of those things, but it’s fair to say that there are yet many of those lessons in humility, life lessons, and opportunities to face my fears and overcome them.

I believe you can face your own fear with undaunted courage without having to face your mortality. Maybe in my case, that’s the only way for me to stop tending my many irons in the fire long enough to take care of myself for a change.  Maybe not.  I’ll be able to look back at some point and say with some certainty what that is. My hope is that I don’t doom myself to repeat the lesson by ignoring what’s in front of me. I’m still a bit spooked about the future, but I’ve spoken with enough people to know that I can do this. I may falter along the way; I may feel like pulling over and chucking the IV pole out the window; I may feel like my courage just isn’t enough to carry me through, but just like my Team OC compadres, I need you, dear reader to be alongside me.  This, like the commitment to ALC I made, is a long-term deal.  I’ve been told by every survivor that it takes a good year, post-transplant, to feel 100%. I don’t anticipate being sick very much of that time, but healing isn’t a short-term process and it’s not something I can do solo. I need you – all of you.



This is my extended SoCal family - Team OC (Orange County)
at the end of a long, hard, week, yesterday - June 8, 2013.
You can't manufacture those smiles!

I'm sharing a couple of things from this year’s ALC, which ended yesterday, mainly my teammates who gave me the courage to keep going under some pretty rough conditions that included an evacuation by the Red Cross on day 2. Hypothermia for all my friends (and me, too) as well as a video that was shot during last year’s event. It is this kind of support, this kind of pushing through the discomfort, this kind of looking past the here and now to the hopeful future that keeps me going some days. I also want to challenge you to face your fear with undaunted courage and to cheer others on who are giving their all as they plod up a steep hill in their own journey. It’s OK to have reservations, bad days, or even tears, but with people alongside you, you can rise up, get back in the saddle, and succeed…and become a different person in the end.

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

Today’s music:  Don’t Give Up by Peter Gabriel

In this proud land we grew up strong
We were wanted all along
I was taught to fight, taught to win
I never thought I could fail

No fight left or so it seems
I am a man whose dreams have all deserted
I've changed my face, I've changed my name
But no-one wants you when you lose

Don't give up 'cause you have friends
Don't give up you're not beaten yet
Don't give up I know you can make it good

Though I saw it all around
Never thought that I could be affected
Thought that we'd be last to go
It is so strange the way things turn
Drove the night toward my home
The place that I was born, on the lakeside
As daylight broke, I saw the earth
The trees had burned down to the ground

Don't give up you still have us
Don't give up we don't need much of anything
Don't give up 'cause somewhere there's a place where we belong

Rest your head
You worry too much
It's going to be alright
When times get rough
You can fall back on us
Don't give up
Please don't give up

Got to walk out of here
I can't take anymore
Going to stand on that bridge
Keep my eyes down below
Whatever may come
and whatever may go
That river's flowing
That river's flowing

Moved on to another town
Tried hard to settle down
For every job, so many men
So many men no-one needs

Don't give up 'cause you have friends
Don't give up you're not the only one
Don't give up no reason to be ashamed
Don't give up you still have us
Don't give up now we're proud of who you are
Don't give up you know it's never been easy
Don't give up 'cause I believe there's a place
There's a place
Where we belong

Passive-Aggressive

When I got my diagnosis, I felt like I was in that scene from Mel Brooks’s High Anxiety where he’s falling, spinning, screaming. Meanwhile, back in the sterile room, I was speechless, listening to the two hematologists from the Huntsman Cancer Institute explain to me the pathologist’s report and insisting I drop everything and get admitted into the VA Hospital right away. My life was about to start spinning out of control – specifically, my control – for quite some time. And the kicker was, no one really knows how long that period of time is.

“What would you do if this were your son,” my mom asked. The doctor said without any inflection, “Admit him and treat aggressively with chemotherapy immediately.”

Did he really say immediately? Why, yes he did. He repeated the pathologist’s finding that 50% of my bone marrow had some nastiness, something called monoblasts or promonocytes that shouldn’t be there. They should be maturing into full-fledged blood cells, but for some reason, they’re not. And that reason, crime-stoppers, is acute myeloid leukemia and he pretty much laid out the stunningly good news that if I did nothing, I’d be pushin’ up daisies in about 90 days. Be sure to invite this guy to your next party!

That night, I began the odyssey. I remember closing my eyes in the claustrophobic confines of the MRI tube mulling over the new reality that something inside of me that I couldn’t feel, see, taste, hear, or smell was trying to kill me. No sci-fi monster waiting to jump out of my chest, no parasite from an exotic destination vacation, no comeuppance from a life of self-abuse, just an anti-climactic lab report with some really bad numbers. Throughout that hour of solitary confinement, broken up by unpleasantly loud clicks, bangs, and weird noises, I realized that I didn’t even know the questions to ask. The only thing that went through my mind was, “What’s going to happen to me next?” Maybe that was a good thing as I broke the news to my immediate family because I didn't know the answers to the questions they had and I wouldn't have to prolong this awkward and quite frankly very disturbing conversation punctuated by gasps and pregnant pauses. In reality, what came next essentially was getting smart about what this leukemia thing is and what I can do (and not from the Internet which takes you from a commonplace symptom to death in about three easy clicks!). 

During my first week in the hospital, one of the hematologists came in and asked, “How are you doing today?” Trying to be friendy, I jokingly tossed back, “Well, I don’t know, you tell me!” The discussion that followed really drove the point home that he wanted my input, my involvement. He wanted to know the details from my vantage. It was in that moment, I realized that more than my positive attitude, I needed to really be engaged with my own treatment, not just cognizant of what was happening. Paying attention to what the doctors were prescribing, what the nurses were doing procedurally, and how my body was responding and feeling all became vital to my healing process.

I’ve stopped things from happening that weren’t OK, refused unnecessary medication, or prevented additional procedures that caused extra unpleasantries from being inflicted just by paying attention and asking questions. No doctor or nurse has yet to be offended. From what I’ve seen, they’ve used them as teaching points for me and it reinforces that I’m in good hands.  If they don’t know the answer, they’ve stopped what they’re doing and gotten the answer from someone else, but in the end, I’m still being taken care of very well. The bottom line is you know your body and what ‘normal’ should feel like. When you’re under the care of a medical professional, it’s important to communicate in a way that you both understand what’s happening and the nature of the discomfort or feeling you have that’s not quite right.  Here are some examples of things I brought up.



• My blood sugar showed an alarmingly high reading (>500) when it was normal every other day. I noted that during my first round of chemo, I was given a constant drip of something called D5-half (the “D” stands for dextrose, a form of sugar). This was given at the same time as the chemo drug. While an inpatient, I had my blood drawn every morning for something called CBC (where the types of cells are quantified, essentially) and chemistry. The blood is drawn through my PICC line – the same line where I get the IV and chemo.  If those other drips aren’t stopped, guess what gets mixed with the blood? A couple of days’ lab tests were skewed as a result and I had my fingers unnecessarily pricked on the hour to test my blood sugar, all readings being normal. My questioning the procedure stopped the finger pricking.
• I was beginning a session of chemo one morning and when the nurse flushed my PICC line, I could hear it in my ears, which was very odd. When the pump started, I could feel it in my chest, something in the many IV pushes I had never happen, so I stopped things right there. It wasn't uncomfortable, but it wasn't right. A quick trip to X-Ray showed the PICC line had diverted away from my heart and into my jugular vein.
• After three rounds of chemo, my body is pretty consistent in the way it responds. For example, at about day 10, my neutrophil count starts to plummet and by day 12, I’m in a neutropenic condition, meaning my immune system is pretty compromised and I have to take certain precautions. During my first round of chemo, I asked for prophylactic drugs to keep me from coming back through the Emergency Room. The hem/onc fellow at the time called me every day following my lab tests to let me know what my counts were and when to start taking the antibiotics / anti-virals. It worked great; the second round, not so much. I didn’t get the calls from the hem/onc that had rotated in and I ended up with a neutropenic fever that got me admitted for a lovely 4 days. Lesson learned: just take the meds when you know the numbers will tank. The new hem/onc fellow who rotated in agreed with me…and I’m doing very well even though as of yesterday my neutrophil count was a big goose-egg! No fever, feeling great!





This was right after the nurse had
exerted some serious pressure on
the hand.  You can see the beginnings
of what looks like a bruise.

• 

  

  Thankfully, it doesn't hurt as the
  nurse said it would. Just a little
  discoloration.

  This Monday, I asked to get a blood type and screen because on day 14 of the chemo cycle my platelet count falls to the floor and without sufficient platelets, you have this nasty tendency to bleed. My request was politely declined and as I was driving home, I got a call from the physician’s assistant I’ve been working with to come back for a – yes, you guessed it – blood type and screen because I’m critically low on platelets (4k/μL – normal is 150k-450k/μL). So, as instructed, I went to the lab to get it drawn. The lab folks are pretty damned good at what they do and have a way of keeping the needles from hurting.  I don’t know how they do it, but they do! The first stick didn’t work. My vein collapsed around the needle apparently. The second stick went in my left hand and he was able to get the sample. On my way home, I felt an itch in that hand and looked down and saw the top of my hand where the sample was drawn swollen about the size of a golf ball. It was really quite amazing. So, at the very place I had taken a U-turn to go back the first time, I made yet another U-turn and went back to the ward and asked, “Is this serious or will it go down by itself?” The nurse’s gasp said it all.  She escorted me to a chair rather quickly and put all her weight on the hand to stop the bleeding. I won’t say, “I told you so, but…” Here are some before and after pictures. I had the presence of mind to come back to the hospital, but I didn’t get a chance to take a picture of the swollen hand.

My point in these examples is not to accuse anyone. We all make mistakes and none of these are really serious even though it did cause me some discomfort and inconvenience. It just drives the point home that regardless of how small the procedure, no matter how trivial the detail, I have to pay attention and if I don’t understand something, I should ask.  I have to manage my care because it’s my body and it’s my life; and I’m responsible for it and I have others available if I'm not coherent to do the same for me. I trust the doctors and nurses to do their job of course, but I have to work with them to fully bring about my healing.

Note that I use the word healing rather than treatment. That’s because I see this whole adventure as more than something happening to me.  It’s beyond restoration to a previous state.  We’ll get there, of course, but the medical aspect of cancer treatment is only part of the big picture. And that’s where my involvement, as the patient, is critical.

You see, this isn’t happening to me although technically that is the case.  Something this big is transformational and it requires participation, my participation. I can’t be passive, but with the same urgency that the doctor who sat across from me insisting I be admitted that night, I have to be aggressive in my own healing.

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

Today’s music – Fix You by Coldplay

When you try your best but you don't succeed
When you get what you want but not what you need
When you feel so tired but you can't sleep
Stuck in reverse

And the tears come streaming down your face
When you lose something you can't replace
When you love someone but it goes to waste
Could it be worse?

Lights will guide you home
And ignite your bones
And I will try to fix you

And high up above or down below
When you're too in love to let it go
But if you never try you'll never know
Just what you're worth

Lights will guide you home
And ignite your bones
And I will try to fix you

Tears stream down your face
When you lose something you cannot replace
Tears stream down your face
And I

Tears stream down your face
I promise you I will learn from my mistakes
Tears stream down your face
And I

Lights will guide you home
And ignite your bones
And I will try to fix you

Talk Amongst Yourselves. I’ll Give You a Topic

No doubt, you, like I, have friends who are, shall we say, a touch indiscreet in how much of their personal life they ‘share’ with people. There’s some sort of need within all of us to vent, to talk about our problems, or more often than not, other people’s problems. As long as you include something like bless her heart, it’s OK, because you’re showing concern, right? Some of us just don't see any boundaries and then there are others who just bottle it up. Until recently, I fell into the latter category...where I am now is a matter of conjecture, but talking things out within reason has been a therapeutic thing. For those in the former category, Facebook is just the latest iteration of on-line over-share and anti-social behavior. About 20 years ago, electronic bulletin boards and chat rooms were the breeding ground of some pretty heated, juvenile arguments and sharing of information that would be clearly inappropriate in-person. Of course, the more things change, the more they stay the same.  I saw a particularly childish exchange over something really petty yesterday. Alas, some of us humans will forever be perpetual drama magnets.

Prior to our electronic presence, we all had our own venues of social networking captured forever à la Norman Rockwell. It seems to me that these places all centered on hair. Stay with me on this one.  Women shared the latest gossip at the beauty parlor and men gathered at the corner barber shop with the newspaper to do the same thing under some other more masculine sounding auspices. So, where does the guy who loses his hair to toxic chemical goodness go? You go to places where others who are rockin’ the cue ball do, right? Yes. So, that’s just what I did. UCAN (Utah Cancer Action Network) put on a little get-together, complete with a really nice breakfast and even some cool door prizes. I actually won not one, but two door prizes, which is nothing short of amazing for me, because I never win these kinds of things (OK, there was that time I won some lenses from my Minneapolis optometrist...way cool!).  I usually smile at the lucky winners with just a touch of envy because I want that thing I don’t really need, but want to win. You know you do, too...be careful what you ask for, grasshoppa!

So, I won a haircut at what appears to be a swanky salon! OK, back up a few steps and remember my hair fell out thanks to a particular brand of toxic chemical goodness nicknamed The Red Devil (aka Idarubicin). Oh, the irony!

Suffice it to say, being the gentleman that I am, I stood with a smile and removed my English driver’s cap in salute and thanks to accept the kind gift. The room, seeing my nearly bald pate, erupted in laughter. There is no expiration date, so I will get that haircut as my hair is coming back in, despite the assurance of my hem/onc fellow, ever encouraging soul that she is, that it will fall out again! When I won the second gift, there was a low rumbling murmur across the room to see if it was something equally ironic, but alas, it was a really nice blanket.

What was really great about this function was that it removed several layers of small talk and allowed us to get to what we all needed to get off of our mental plates, and trust me, just the word cancer adds a heapin’ helpin’ of hard-to-digest goodies on that plate. That’s before you put a name to the type and stage and then there's the treatment. Deep breath...we can do this. What a group like this does is take a good amount of that hard-to-digest off of the plate with a little word: hope. It also by-passes the TMI (too much information) filter because we already know the awful details...and can generally laugh at them or collectively roll our eyes! No gossip here, we've all been there. Empathy truly abounds!

And the people that put the function on drove that point home both in allowing us all to talk in groups about physical, mental/emotional, and recreational needs. In more than talking, there were resource and advocacy groups as well as some service providers specific to cancer patients and survivors. When all was said and done, we all tied a little token embossed with the word hope on it with a ribbon and attaching it to a single dahlia bloom and then gave the plant to someone else as if to say, I’m giving you hope. It was more than just a gesture because in a real sense, the people there were making it. They were surviving and thriving and contributing. And they were happy and smiling and living decades after being diagnosed with stage IV cancers. Many conversations that used to include the words, get your affairs in order, are becoming more hopeful and providing new options for treatments and clinical trials.

Make no mistake, cancer is still a killer, but we’re making significant progress. I’m convinced the reason that we are moving forward so deliberately is because we’re no longer silent about it. We’re demanding to know how to fight this monster and we’re funding research and we’re winning!

And we need to keep moving forward. To put this in perspective, a 2012 American Cancer Society report projected 1.6 million new cases of cancer to be diagnosed last year; some 577,000 deaths were expected based on trends. When I was waiting for my blood test yesterday, I saw an article in Time about cancer research that indicated that 1 in every 2 men and 1 in every 3 women will be affected by cancer in their lifetime. That’s pretty sobering, but again, makes the point a bit more urgent to keep the research on the fast track…and we need to keep talking about it – lifestyle choices to reduce our chances of getting it or surviving it if there are factors outside our control like genetics.

I’ve felt the need to talk with other leukemia survivors because despite how good I’m feeling, I know that I’m far from being out of the woods at this point and have a rather long road to recovery ahead of me. Everyone is different in how well we tolerate treatment. Some people get horribly ill and others seem to sail right through. So, while there’s a basic course to the regimen, there is a bit of an art as each body reacts accordingly. The Leukemia-Lymphoma Society connected me with one such survivor who has been free of leukemia for nearly a decade since transplant, giving me yet more reason to hope.

The other common thread I’m seeing in talking with survivors is that this is very much a long-term illness and the people that are standing with me for the long-haul are truly more than fair weather friends. Actually, the kind of people that hang tough with you when the going gets this tough are the color picture in the dictionary next to the entry for friend. For those of you who have stuck with me from day 1, thank you for being a friend, a real friend, and letting me talk…amongst you! I’m no longer feeling verklempt!

Sounds like a great segue for today’s music Thank You For Being a Friend by Andrew Gold

Thank you for being a friend
Traveled down the road and back again
your heart is true you're a pal and a confidant

I'm not ashamed to say
I hope it always will stay this way
My hat is off, won't you stand up and take a bow

And if you threw a party
Invited everyone you knew
You would see, the biggest gift would be from me
and the card attached would say,
Thank you for being a friend

Thank you for being a friend
Thank you for being a friend
Thank you for being a friend

If it's a car you lack
I'd surely buy you a Cadillac
Whatever you need, anytime of the day or night

I'm not ashamed to say
I hope it always will stay this way
My hat is off, won't you stand up and take a bow

And when we both get older
With walking canes and hair of gray
Have no fear, even though it's hard to hear
I will stand real close and say,
Thank you for being a friend

And when we die and float away

Into the night, the Milky Way

You'll hear me call, as we ascend

I'll see you there, then once again

Thank you for being a friend

We Don’t Talk About Such Things

When I was a little guy, I said things that were clearly inappropriate. No, really I did! I’m sure you’re thinking that would be so unlikely considering the erudite repartée that we share during our times together here on-line…but it’s true. After all, that’s what little boys do! Once I became a parent, I got to be on the receiving end of the oft ill-timed inappropriate comments and the resulting opprobrium from other parents who were clearly more qualified than I to raise a child (they were on the distribution list for the unabridged instruction manual)! And the questions – oh the questions! – I got to answer every last one of them with every bit of deference and occasional discretion due. While I tried to be matter of fact about answering even the most embarrassing questions, I did get some good laughs out of those Q & A sessions. Even through the innocence, there have typically been questions we’ve sidestepped rather conveniently because they are uncomfortable to answer or perhaps socially awkward – we just don’t know the right way to answer.

When I graduated from Annapolis, I had been schooled in more than just the naval trade. My idealistic young classmates and I were put into the classic leadership laboratory that is active duty which turned workaday situations and opportunity into the coveted ‘soft skills,’ and we as newly-minted naval officers learned how to handle those awkward situations, even if we still didn’t know the actual answers to the question. We learned how to be refined, genteel, and downright tactful…and the secret hopscotch maneuver to sidestep the question when we didn’t know! Granted, that experience comes with age to some extent, but in retrospect I see that tact and diplomacy have a way of deferring a solution rather than simply preserving a tenuous peace. Politicians seem to have figured that one out pretty artfully, but some of us aren’t buying. Another topic for another time!

It wasn’t that long ago that there were many things we sidestepped for a number of reasons.  Some of those reasons had to do with simple ignorance, others were to keep the peace within a family or workplace. Polite society has always dictated to a great degree how we handle certain subjects and for some subjects, they’re simply in that category of “We don’t talk about such things!” That’s the answer to the question: we don’t talk about it. But that doesn’t solve the problem. It just shoves it under the rug like a bunch of rubbish for the next person to find when cleaning up.

But we have to be able to talk about things. Specifically, we need to be able to talk about the tough topics without fear of a negative reaction, without fear of reprisal, and without fear of misunderstanding. Suffice it to say, I’m referring to the tough discussions surrounding cancer.  I’ve been around people who won’t even say the word, “cancer” as if not saying it makes it any less real, any less deadly. Talking about it doesn’t conjure it into existence.  It just calls it for what it is rather than talking around the issue, using euphemisms or slang. I’ve seen some people who whisper the word or just call it the “Big C,” but in calling it out and naming it robs it of its power over us and in a very real way, causes us to face cancer head on and to fight it. The last place I want to see cancer is in my obituary, so I’m going to fight it while I have breath in me and I hope you fight it with every breath in you, even if you’re not directly affected by it.

After all, Nobody expects the Spanish Inquisition and nobody expects cancer will happen to them, but trust me, cancer happens to anyone and I hope we can find a way to laugh at it and through it by calling it for what it is.

Calling cancer for what it is, is also how research gets funding and patients who can’t or don’t know how to stand up for themselves gain advocates. I dare say that if some stranger walked into your house and threatened to injure a loved one, you wouldn’t turn your head away and ignore the situation.  Any sane person would stand up against the unwelcome intruder and do whatever it took to protect everyone in the household. We shouldn’t view cancer or any serious or chronic illness as anything less.  It is an unwelcome intruder that seeks to kill and terrorize and we need to call it out.

It wasn’t that long ago that when someone got seriously ill, people just didn’t talk about it.  Sure, part of that had to do with the medical technology of the time and we sent people with complicated chronic conditions that had to do with mental health or tuberculosis to special facilities away from the rest of polite society.  And that’s really troubling that so many people were essentially put away because we just didn’t know what to do. What’s more troubling in my eyes is that doctors intentionally withheld information from families about patients that were terminally ill. Quite often, the thought process had to do with the doctor thinking that it would just upset the family.

We all die, but knowing it’s coming so that arrangements can be made to square away finances, legal matters, and other details. And aside from personal loose ends and good-byes, palliative care for the inevitable passing is a crucial element.  We can’t just ignore that because we don’t feel comfortable in making those decisions or talking about it. Going through those things is, in a very real way, one of the kindest things one can do for survivors. Doctors owe it to put the facts before the family and the patient and let people make informed, intelligent decisions. And as for those of us who aren’t going anywhere any time soon, we need to know what we can do to fight our battles to win.

Yeah, I have cancer. Don’t feel sorry for me. Fight for me, fight with me, laugh with me.

Today's music is from Owl City - Shooting Star

Close your tired eyes
Relax and then
Count from one to ten  and open them
All these heavy thoughts will try to weigh you down
But not this time
Way up in the air
You're finally free
And you can stay up there
Right next to me
All this gravity will try to pull you down,
But not this time

When the sun goes down and the lights burn out
Then it's time for you to shine
Brighter than a shooting star
So shine no matter where you are
Fill the darkest night with a brilliant light
'Cause its time for you to shine
Brighter than a shooting star
So shine no matter where you are... tonight
Whoa, Whoa, Whoa
Brighter than a shooting star
Shine no matter where you are... tonight

Gaze into my eyes when the fire starts
And fan the flame so hot it melts our hearts
Oh, the pouring rain will try to put it out,
But not this time
Let your colors burn and brightly burst
Into a million sparks that all disperse
And illuminate a world that will try to bring you down, but not this time

When the sun goes down and the lights burn out
Then it's time for you to shine
Brighter than a shooting star
So shine no matter where you are
Fill the darkest night with a brilliant light
'Cause its time for you to shine
Brighter than a shooting star
So shine no matter where you are... tonight
Whoa, Whoa, Whoa
Brighter than a shooting star
Shine no matter where you are... tonight

A thousand heartbeats beat in time
And makes this dark planet come alive
So when the lights flicker out tonight
You gotta shine

When the sun goes down and the lights burn out
Then it's time for you to shine
Brighter than a shooting star
So shine no matter where you are
Fill the darkest night with a brilliant light
'Cause it’s time for you to shine
Brighter than a shooting star
So shine no matter where you are... tonight

Whoa, Whoa, Whoa
Brighter than a shooting star
Shine no matter where you are... tonight