Showing posts with label American Cancer society. Show all posts
Showing posts with label American Cancer society. Show all posts

Wednesday, June 19, 2013

Ignore the Numbers – Fight Like Hell

We all make a lot of decisions based on the numbers and for most things, we have to weigh what the numbers are telling us in order to make informed decisions. Most of those numbers are routine things – how much we can afford, how fast we’re driving, how much time it will take, etc. These things tend to be routine and the consequences for screwing it up aren’t typically a big deal. Then there are other decisions that involve a bit of fuzzy logic. They involve feelings, a lot of unknowns, and probabilities. Those consequences?  Well, they have more oomph to them and screwing them up can cost money, relationships, or in extreme circumstances, your life!

Yeah...this is what it feels like when you get the
heavy diagnosis...and that little gerbil's tachometer
is definitely in the red zone and then...he stops and
spins until the wheel stops.
When a doctor hands down a heavy diagnosis, there are far more questions than answers; there are far more decisions than possibilities; and there are far more feelings than facts. The prognosis for illnesses gets progressively more complicated with the ailment of course; and as the word survival enters the picture, we want numbers. The kicker is that the numbers we really want are the ones that are always the difficult ones to estimate.  After all, everyone is different.  Everyone reacts differently to treatment and comes into that treatment in different condition and with different histories, sensitivities, and attitudes.  There are just a lot of variables that come into play and not even the best doctors can hone the number accurately. It comes down to their past experience, the results of studies that have similar demographics and the art of guessing. It’s not always reassuring, but it’s reality.

When I got my diagnosis and I found out the particular type of leukemia and then the specific stage it was classified, I started researching what my chances of survival were, based on published studies that were broken down by age and race from both the American Cancer Society and the Leukemia Lymphoma Society. They were stark and honestly not very optimistic, but my hematologist was able to factor in a couple of other things that the studies were not: I was in pretty good physical condition when I arrived and my attitude was positive. When I asked for the numbers, they were far better than those published in the ACS and LLS studies. On the other hand, the docs were quick to point out that the transplant docs were in a better position to make that all-important educated guess and a lot was resting on how I responded to the transplant, which is yet to come. Even though I was introduced to some new terms like GVH (graft versus host) disease and TRM (treatment related mortality), I remain optimistic.

It has been almost four months since my diagnosis and as I’m sitting up in a hospital bed with a nurse connecting me with another dose of chemo fun, I’m feeling fine. These consolidation rounds are nothing like my first three weeks as an inpatient during my induction where I have never felt so sick in my life.  I know the chemo is working internally and my body responds like clockwork so far.

The big unknown for me is the transplant.  There’s the waiting, how I’ll respond, how long it will take to recover and so on. Suffice it to say, the unknowns play a huge part in how we respond to the tough words a doctor may give, but I’ve come to realize that despite how we base our routine lives on numbers, this is an instance where numbers be damned, we have to fight like hell for ourselves.

I just finished reading Lance Armstrong’s story of his early years – It’s Not About the Bike – which specifically discussed his battle with cancer as a world class cyclist and then beating the odds and returning to world class status and ultimately winning the Tour de France for the first time. Regardless of what you might think of the man today, the story is compelling and courageous, especially considering the fact that his testicular cancer had spread to his lungs and his brain. He fought a difficult uphill battle with his cancer, but he won.  It wasn’t until the end of the book after winning his first Tour de France where his doctor revealed that his chances of survival were a mere 3%! Perhaps had he known this, he may have given up; or maybe it would have given him even more reason to battle on. That’s another facet of the prognosis the doctor cannot know – our resolve to fight or resign to mortality.

I’ve unwittingly overheard one of those tough conversations about a man’s cancer taking the turn toward terminal and his gracious coming to terms with his inevitable demise; I’ve also made friends with someone who laughs at his own cancer in the face; and I’ve known someone who received an identical diagnosis as his own brother, one of which made his remaining months those of peace and enjoyment and the other going out fighting. And every one of those situations ignored the numbers and fought like hell for themselves.  You see, fighting doesn’t necessarily mean that you seek out the best doctors, the clinical trials when conventional treatment doesn’t work, but it can! 

It all comes out to determining what the best course of action is. It may, in fact, mean doing a lot of footwork to find the right second, third, or fourth opinion to get the right doctor that has the expertise you need…or it may mean fighting with loved ones to let you enjoy your remaining time on this mortal plane with dignity and comfort.  It may mean winning the fight within your mind to find the peace with whatever decision you arrive. Numbers may mean nothing or everything, but ultimately making the decision you can live or die with is the one that gives settles you. And that’s why, my friends, I say, “Ignore the numbers and fight like hell” … for you.

Music for today – Tim McGraw’s Live Like You were Dyin’

He said, “I was in my early forties
With a lot of life before me
When a moment came that stopped me on a dime

“I spent most of the next days, looking at the x-rays
Talking ‘bout the options and talking ‘bout sweet times”

I asked him when it sank in
That this might really be the real end
How's it hit 'cha when you get that kind of news?
“Man, what'd ya do?”
He said,

“I went skydiving
I went Rocky Mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I'd been denyin’ ”

And he said, “Someday I hope you get the chance
To live like you were dyin’ ”

He said, “I was finally the husband
That most the time I wasn't
And I became a friend, a friend would like to have”

”And all of a sudden goin’ fishin’

Wasn't such an imposition
And I went three times that year I lost my dad
Well I, I finally read the good book
And I took a good long hard look
At what I'd do if I could do it all again
And then

“I went skydiving
I went Rocky Mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I'd been denyin’ ”

And he said, “Someday I hope you get the chance
To live like you were dyin’ ”

Like tomorrow was a gift
And ya got eternity to think about what to do with it
What did you do with it?
What did I do with it?
What would I do with it?

Skydiving
I went Rocky Mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And I loved deeper
And I spoke sweeter
And I watched an eagle as it was flyin’

And he said, “Someday I hope you get the chance
To live like you were dyin’ ”

To live like you were dyin’
To live like you were dyin’
To live like you were dyin’
To live like you were dyin’

Tuesday, June 4, 2013

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

Sunday, March 3, 2013

What Do You Say?

On Thursday, February 21, I had the unequivocal words spoken to me that changed the course of my life spoken to me in stark terms that left no interpretation: “your pathology says you have acute myeloid leukemia.” The diagnosis of a blood cancer is not something I ever expected to get. It’s not something I was prepared to absorb and it certainly wasn’t something I wanted to be explaining to people over the phone. I just knew so little about it and my learning curve is still so high.  Going from a live-and-let-live mentality to fighting for my own life in such a short time has thrown me for a loop, to put it lightly!
Trying to explain the details to loved ones and family has proven a challenge as well. I don’t know what to say other than the obvious and from the receiving end, what do you say back?  I’ve struggled with it because as uncomfortable and downright frightening as it is for me, the discomfort on the other end of the phone or the stark look, often with tears, on a face is something that cannot betray the confusion and inner conflict of what to do or say next.
I’ve been pretty open about saying that I give a ‘pass’ to everyone in getting over the shock.  Shoot, I’m still finding myself wondering what’s going on. I’m finding myself crying out of gratitude for simply being alive, for the multitude of little kindnesses shown me, for no reason at all really, yet I haven’t fully taken this all in and thought about the stark fact that I have a life-threatening illness. I’m just plugging along as I still feel just fine.  It’s such a cognitive dissonance! So, what should you say when a ball like this gets dropped on you?
I’ve stewed about this over the past week or so after having communicated to so many people and the thing that comes back to me over and again is simply this: be honest. Everyone has their own way of dealing with shock and far be it for me to tell you how you should respond. Once the shock has sunk in, what I can tell you that I need is the same thing I wrote on day 1: just be there for me in whatever way you can. That doesn’t have to translate into anything other than what *you* feel comfortable with.  I have no judgment or expectations on what someone should or shouldn’t do. Just be there for me the same way you would want me to be for you if you were in my hospital-issued traction socks. A Starbuck’s extra hot peppermint mocha is great, but not everyone has the time, wherewithal, or is in town to stop by with one, so a smile, kind word, or a facebook post or photo with something that makes me smile can make all the difference.

I did a little surfing around to find out what is appropriate because let's face it, Emily Post doesn't exactly address this one head-on.  You can check out American Cancer Society - Ways to Respond for some good ideas as well as this list of do-nots!
I so very much appreciate the outpouring of kindness, sympathy, and real support from everyone that it has quite literally brought me to tears more than I care to admit. For those of you who are survivors yourself or caregivers of them, I can’t begin to tell you how much your very meaningful and substantial words of support have carried me and will continue to buoy me when things actually take a downturn, because we all know they will at some point.
Without belaboring the point, I hope that should you make a trip to the VA and see me sans-cheveux wearing the “Cancer Sucks” beaning my sister has ordered for me covering my impending bald pate, don’t be repulsed or join the pity party. I won’t be throwing one (and call me on the carpet if I do!).  I may not look good, I may not feel good, but the fact that you’re here for me will make all the difference in the world. Knowing that I have allies, people to hold my arms up when I can’t lift them will be what it takes. Be upset in your own way, but please help me be keep positive. If there were a single common thread I’ve heard from every cancer survivor I've spoken to since this ordeal has begun, it has been that keeping a positive outlook was what made all the difference. And while I do not consider myself a religious man, I do have faith – in you  my friends, family and extended circle of on-line acquaintances, in the medical team that is working diligently to bring healing back to me, and of course, I do believe in me.  An on-line friend of mine I've known for years sent this video to me and it encapsulated what I needed to hear at the time and they're what continue to need. The words jumped out of the screen and were just what the doctor ordered (although it wasn't on my chart!).

Thanks again...be well...stay strong!