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

Bon Courage

Just like anyone, I have good days and not-so-good days. Today has been a rough day. There’s just no way around it. I’m tired, I hurt, and I’m just feeling it all today…and in reality, I’m only at the beginning of this adventure. I’m not sure if it has something to do with moon phase, the change of seasons, or the coming end of the month when quite a few of the medical staff rotate to their next assignment. There were three student nurses training alongside regular RNs today attending me as well. So, the white coats and the nurses seem to have been fruitful and multiplied. Add to that my regular chemo was scheduled to start at 10:00 this morning, but as soon as the IV pump turned on, I knew something was wrong.

I could actually feel it inside my chest, which was odd.  It wasn’t uncomfortable, but I shouldn’t have felt anything at all. When I brought it to the attention of the staff they got me down to X-Ray and found that the PICC line had somehow turned upward toward my jugular vein instead of toward my heart as it should have. This isn’t entirely uncommon, but it’s not a good thing. It started to make sense as I did have a bit of a headache after my Tuesday night round and I could actually hear and feel the saline flush when the nurse disconnected the chemo for me to get x-rayed. That was a weird feeling. The not-so-good feeling was them putting a new PICC line in my other arm. There is some numbing in the area near where the incision is made for the catheter to be inserted, but it’s a bit painful as there’s a dilator that allows the actual catheter to be put into the vein. Several hours later, I still feel a bit achy from the procedure. And in just under an hour from now, I get the fourth bag of Cyterabine infused into me.

The doctors tell me about the side effects of chemotherapy in physiological terms, but when it comes to brain chemistry, I don’t really know and I haven’t researched it simply because there are always assertions on the Internet that will certainly support my or someone else’s suspicions or it may lead me down a rabbit trail to make what I’m thinking worse. The Internet is a great resource, but it’s also the hypochondriac’s playground as I’ve said and although I’m not prone to self-diagnosis, I’m looking for answers…and it looks like they’re going to have to come in the old one-day-at-a-time way. After all, there’s no sense in fretting over something I don’t know about. To quote the French Renaissance writer Michel de Montaigne, «Qui craint de souffrir, il souffre déjà de ce qu'il craint.» or “A man who fears suffering is already suffering from what he fears.” As for the here and now is certainly another matter.

The here and now is tempered by a few realistic things. A walk up and down the hallways and in particular today, a trip down through the tunnels. In a hospital, it’s not hard to find someone who is in the same boat as you (especially since there are so many navy veterans, even in this land-locked state!) and it’s just as easy to find someone who is in far worse condition and put things in perspective. And while the pain and the constant toll that cancer takes on your emotions makes it difficult to keep upbeat and positive, there’s something that I recognize I just can’t lose while walking through this figurative valley of the shadow of death. And that, quite simply, is hope.

Ironically, hope comes from giving it to others. It has come to me from those of you who have done extraordinarily small things as well as well as the things that I wouldn’t have imagined. It comes from sending words of encouragement as well as the Facebook postings, the jokes, the text messages, the things you may not consider at all, but matter a whole lot to me. In my wanderings today, I came across a little booklet in the convenience store tucked away in the tunnels near the cafeteria by a guy named Nick Vujicic (pronounced VOY-a-chich).  He’s not someone you’d very likely ever heard of before.  He’s not a famous guy, nor glamorous nor someone who wields political power. What he does though is wield influence in such a powerful way that it takes your breath away if you’ve ever seen him. You see, Nick Vujicic was born without limbs, yet offers the kind of hope that is inexplicable. He can go into a room and without even speaking the same language as his audience captivate and impart a feeling that doesn’t require the spoken word. He communicates hope…and while I recognize full well that I can’t always wear a smile, I have to keep hopeful deep down somewhere inside like Nick does.

I’ve found that the best way to foster generosity is to be generous; and naturally the best way to be hopeful is to offer it to someone who needs it. I suspect I’ll come across that person when I least expect it and in return find that I’ve been unwittingly bolstered myself. There’s no sense in being disingenuous about offering what you don’t have in order to somehow manipulate this intangible thing called hope, but to quote the guy with no arms or legs, “You may not control what happens to you, but you can control how you respond.

As difficult as it has been to face this long-term, painful disease called cancer with all the unknowns, I have to respond with courage, determination, and of course, hope. The French term, Bon Courage, that I entitled this post isn’t just for me, it’s for any of you who are going through it. Whatever it happens to be, bon courage! Dependinf on the context, bon courage translates to: good luck, hang in there, be of good cheer, be strong and courageous.

Sois bien, gardez fort, et beaucoup d’amour à vous tous…et bon courage!