Monday, April 23, 2012

Suck it up!

Last night Tracy and I had a discussion about finances, work, fun and toys.

I was accused and rightfully so of trumping any conversation with "I had cancer".

I have literally 46 other topics I want to address.  But this one seems fair game at the moment.

The gist of her message was "suck it up" and get on with life.  Rightfully so I think.  But easier said than done.  I haven't really worked since August of last year.  Yes I rebuild part of the deck after surgery, and I've done a tiny bit of work in the shop.  But just the easy stuff.  Stuff that would normally take a few minutes has taken hours and some I have had to re-due.

The yard is a mess..which I can't stand.  But not enough energy (or energy I want to waste there) to clean it up.

Chemo brain...you forget stuff and no concentration make it hard some times.  But I am writing, skiing and climbing, riding my bike and running.  How bad can it be?   Not too bad really.  Just that none of those things pay the bills.

I think of them all as small steps to getting back to normal.  And it is coming.  But numb hands and feet or the days you physically collapse and have to sleep all day for no apparent reason do put a damper of the "being OK" idea.

It is a hell of a lot easier to ride my bike till I puke or climb a frozen water fall than it is to stand over a bench and risk messing up a $4000 handgun with a few errant file stokes.  May be it is just the mental stress of making a mistake on a $4000 handgun.  Puking on a bike while unpleasant isn't retching over and over again from chemo.  So there isn't much stress in that!

But as Tracy rightfully implied,  I really do need to "suck it up".   People have gone through a lot worse and will again.

From another perspective here is a thought.  A few years ago I was intentionally hit by the driver of a car.  Dealing with the legal aftermath of that was a nightmare (more bitching on my part here).  The recover involved knee surgery and two more surgeries to sew both my right and left biceps back on.  Recovery was/is long and painful.  I still get reminded of one or the other almost every day.  One of my courtroom displays was to be my triathlon times from before and after the accident.  Minutes separated the times from half a dozen Tris the year before and the year after the hit and run incident.   I thought those minutes the ultimate proof of my injuries.  A small picture on what it took just to be able to do a Triathlons again.  The attorneys involved from both sides thought they simply proved I had no injury.  I was after all still able to do Triathlons.  How many are?

I demand a lot out of life.  I demand and try hard for perfection in my work.  I have done it enough (and my games) to know what perfection is.   I seldom achieve it but am always looking for it.   I know when I am good enough health wise to demand the best or just be happy with what I have.  At the moment I am happy with what I have.  But that doesn't mean I am not always looking for more...much more.  That "more" just might be dropping a minute or even a few seconds on the next bike ride or Tri.

Even the smallest of steps sometimes take a lot of energy and will power to accomplish.  It doesn't mean  you aren't trying.

Today I'll "suck it up" and try a little harder.  Seems fair enough today.  And I'm glad she asked  :)
No one  (or at least not me) ever wants to do all this by themselves.  I'm lucky I don't have to.  Even if I may not like the message on occasion.  The messenger is seldom the real problem.



  

Friday, April 20, 2012

I wish it were pretty.

But it aint.  Nothing about Cancer that is pretty, nice or socially acceptable.  Nothing.  I wish there was.  This is a nasty, ugly and terrifying read for me.    Just as likely to scare me remembering this stuff or looking it up in my journal as it is to simply make me cry and stop me writing for a few days.

It isn't pleasant to write about.  Hard for even me to believe it really was as bad as I am telling you it was.  Trust me on this, it was worse.

I am just like everyone else I have intentionally avoided and ignored cancer.  Even now I wonder if I am a "bad person" for having had cancer.  How stupid is that?  But it is something that goes through my head on occasion.

If you can struggle through this you might be a little more sympathic to the next person you bump into with cancer.  There are a lot of "US" out there.

Thursday, April 19, 2012

"You'll lose some teeth" Dec 27 2012

Dec 27  2011 Two days after Christmas.  (I had no clue until I wrote this today 4/19 and looked up the date of the comments)  I weigh 190.6   I am up a few pounds from the end of Nov.

So chemo and radiation are over.  We (Tracy and I are unmistakenly a "we" by now) are  25 days out now from treatment.  Our first visit after treatment with my Oncologist today.  I get cleaned up and dressed up and try to look presentable.  No hair of course.  Can't swallow.   All my food and water come via an IV now.  Still feeling like crap and on TPN but I will show no weakness today.    My Oncologist  (a woman) had made fun of my clothes falling off last time she saw me.  "Crack attack" or something similar as I was hitching up the waist of my pants leaving the exam room.   I was also feeling pretty puny and still sick last time I saw her.  And didn't like the comment or give a shit about how I looked.  Pissed me off AGAIN.  Seemed to be a rather regular occurrence on office visits through out treatment and it has continued.  It was never was a "team" approach in any one's imagination no matter what was claimed going in.

10 days earlier I had walked around the house once.  That walk is 2.2 miles   Which was really tough at the time.  I damn near hit my max HR just walking over a small rise in the road.  Mid 180s anyway.      Almost more than I was capable of at the time.  I hadn't and wasn't going to do THAT again anytime soon.  Hadn't been on the bike yet.  And today I was told with greta authority, "now you need to get some exercise".

I'm thinking...you have "no freakin clue lady".  Empathy was never her high point.  Reality didn't keep her from making such silly ass comments either.
Sorry I digress.

The idea of more exercise seemed rather trivial once she announced, "You will lose some teeth. Typical with radiation and chemo you'll lose some teeth, be sure to visit your Dentist again soon."

And I am thinking.."What the fuck do you know, you haven't even looked at my teeth or mouth!"
May be it was the shock of her statement that made me damn near bite my tongue off instead of screaming at her.  More likely it was just having Tracy in the room that was really keeping me in check socially.

WTF!  There are a lot of things you lose in this "cure".  Losing my teeth wasn't in the plan.  I was more than a little freaked out by the comment.  Freaking out seemed to happen on a way too frequent schedule in this process.

I got into the Dentist literally the next day.  I had a few minor issues with my teeth but I wouldn't lose any of them in the short term anyway.

Thanks Doc for adding that totally unwarranted stress to my life.  WTF are people thinking?  Obviously they aren't at times.

Chemo and radiation turns you into a old man in very short order.  No matter how strong or tough you think you are.  Losing your teeth just highlights what the poisons in your body are doing to you.  Not like you miss any of the signs on that road.  Having your Doctor be casual about something as serious as losing your teeth and being wrong at the same time (and not do an exam before such a proclamation)   does nothing for you mental health.  Nothing.  It did how ever piss me off again.

Funny I spent very little time being angry through this entire process.  Generally when I did get angry it was because I was scared shitless.   The threat of losing my teeth was one of those times.  Every other time I remember (Tracy may have other thoughts) I was angry at the medical staff for not realizing just how badly the treatments effected me.  3 or 4 times at the Docs, once at the radiation staff and twice getting IVs done.  Seems like a lot now that I count them up.  Patience is never my strong point and I was very thin most of the time through this.

No excuses.  I don't suffer easily or well in silence.

A warm blanket..... Nov 25

It is Friday and I am puking every day now.  Several times a day.  The 3rd round of chemo is Monday.  And things are going to get a lot worse.

There were many days that the best thing that happened was being able to take 3 (not one or two but 3) of the pre-warmed cozy little cotton blankets and wrap up in the "easy chairs" and fall asleep while I was getting my daily IV of saline and what ever else they were dripping into me.  Generally it was some sort med to keep me from puking.  Which also didn't actually work.   I am puking enough now I can feel the stomach acid eating at my back teeth.  Nothing in my gut for weeks so nothing to throw up but stomach acid.  All rather unpleasant actually.   But I have a waste basket at my bed side I full half way with shredded news paper.  When I am not spitting into it I am puking in it.  Or throwing a dirty tissue in it from my running nose.  Never thought I could go through a box of tissues!  I am beginning to love that waste basket.

Those were the good days.  And I had it easy by comparison to the others I would see at the hospital every day.  You start thinking everyone has cancer if you hang out there very long.   Shit is getting really surreal and I'm not even on any good drugs!  Life can get really simple in a big hurry.

Friday, April 13, 2012

Da Mask of Zoro or Freddy Kuger? Oct 18



This thing was a trip.  And never in a good way.  It is molded to you and literally bolts you down to a table.  The idea is NO moment so the targeted radiation will only destroy what is required.  It is so tight that nothing and I mean nothing moves.  I have become a little claustrophobic from IMRs in the last few years.  Too many trips through that tunnel while in serious pain was my thought.

The mask by itself would have been reasonably tolerable.  But they didn't stop there.  That Popsicle stick coming out of my mouth is attached to a foam insert literally the size of a fudgesicle.  Again the idea is to keep your tongue in the same position for every dose of radiation.   Try breathing with a fudgesicle in your mouth and you hands held down?!

I was their first patient (new hospital) to custom cut their own mask.  I literally couldn't swallow in this thing.  No wonder it made me so claustrophobic.  So I cut out a section of the neck till I could.  Finding out I really was  claustrophobic gave me reason to cut out eye holes as well which helped and a bigger nose opening and mouth slot.  The staff was amazing for the most part.  But there is no question none of them have every been bolted to a table.  I only freaked once on a really bad day.  But made my point and people were way more attentive after that.  Even just a minute or tow less out of the mask was a HUGE stress relief mid treatment.   I did this guy every day 5 days a week for 7 weeks.  Doesn't seem like much time when I write it down now or when I started.  Seems like an eternity now..

Any way this guy set  me off every time I put it on.  I first tried doing it without meds.   That happened once.  So I would do a Valium before the trip into the hospital every day.   Eventually I was able to do it with out drugs.  Took me a few weeks and it was NEVER easy.  If I was really sick I couldn't muster the control needed to get it done (it was only 20 minutes or less being bolted to the table) .

As I lost weight and my hair the mask got looser thankfully.  Then they started talking about remolding it.  Making it tighter....      I panicked and decided to figure out a way to fool them...so I found an index in the mask and stayed there without moving a mm every day during treatment.  Not sure if it worked but they didn't remold the mask thankfully.  It was something I continued to worry about until finally I was done and got to throw the damn thing away.

I had my last radiation appointment on a Monday.  By this time I was really sick.  Stay in bed all day puking sick.  My throat was really painful.  But the weekend recovery from the radiation burn made it bearable.  I could literally taste he burnt  tissue in my throat by this time and I had stopped eating or drinking. pretty much.  Most of what I was getting now was via IV.   I 'd have to go back and look at when TPN started but it was around the end of rad.  Actually it was earlier  as TPN started the end of Nov. Last Rad was Dec 3.  Last Chemo and first day of TPN was Nov 28.    TPN is "Total Patient Nutrition".  That is where you get fed through a IV tube in your chest and you are get ALL your food and water through a tube.  At the cost of $1000 a day!  I would eventually be on TPN for 6 weeks.   You loose the ability to swallow and take a shit  in the process.

Anyway I skipped the last Monday.  I knew another dose of rad on the Monday would add at least another full week to my eventual recovery so I blew it off.  The rad doc eventually agreed after the fact but he wasn't happy.  As matter of fact neither my oncologist or my radiologist were "happy" with me by the end.  Fuck 'um they didn't have to live through it, I did..

No love lost for either of them.  I never felt we worked as a team, which eventually pretty much pissed me off.  That feeling hasn't changed.  Tracy (my lovely wife and care giver) has a different version of that story and is likely the more perceptive and factual one.  But she isn't writing this I am :)  Bottom line...the bed side manner for my two primary oncology staff could have been a LOT better.

Thursday, April 12, 2012

yesterday 2/12/2012

Yesterday I knew what I could do and  dreamt about what I might yet be capable of.

Not now.  Not today.  I never know.  Even before I read the previous blog about the possible results of chemo I was feeeling the aftermath of my own chemo.

A 16 mile slow bike ride.  The next day a Valentine's promise of going to the RV show.  Tired and questioning the up coming climbing trip after just two easy days.   That night I was physically shattered by a dry mouth likely brought on by Ginger Ale of all things.  I couldn't sleep.  Took all day just to recover and feel reasonably normal but no where near strong or really normal.

WTF is up with that?

fuck this! 11/2/12

Easy to date this one as my weight was dropping like a stone. Only one day I was 217#.

I am tired of being sick.  I have a cold and it aint the cancer talking.  Yesterday I decided to buy a new Marmot neoshell soft shell and go climb the Eiger all in BLACK :)

At 217# today.  At 190# watch me run up the Eiger!

(2/13/12) I never did buy that Marmot jacket and I went down to 184#.  Sick as a dog, worried  and hurting at that weight.

I did however get lucky enough that Ruth Ann @ Polartec donated enough Neoshell for a new set of NWAlpine salopettes and a jacket.

I am soooo tired of being sick.

Day One Oct 17 2012

4 sticks to get a IV in.

Chemo and hydration was OK.  Rad was a little out there but manageable

the results after we left the hospital a hard slam.

Home at 5:30PM with a 9:30AM start

ended up in bed by 6:30...sick now and ready to puke even with the meds at 10PM
The first of three chemo sessions...each getting worse they tell me..

it is only a good story if....mid Oct 2012

you come through it and are able to continue with your life on your own terms.

will I?

(I did obviously!)

Damn it! This is taking up too much of my time! Mid Oct 2012

Cancer!  Holy shit I had no idea how it takes over your life.  I really resent the interuption.  My time is no longer mine.  I (and Tracy) now have to deal with this shit daily.  My life is no longer on my personal schedule and it REALLY pisses me off.

why write about it? Early Sept 2012

When you get down to the gutter level of cancer, which is the the cancer ward in your local hospital, it  seems everyone has it.  My mother in law, an uncle and likely my Grandfather died from one form or another of  Cancer.  My dogs have died from it.  Even a marvelous 2 year old puppy named Zuzu.

I started hating cancer when Zuzu died in my arms after a 48 hour hell storm.  Wasn't really happy with the rest of the world either at the time. It took a long time for us as a family to recover for the shock of her death.

So who gives a shit about another mid 50's dork with Cancer?  And likely a cancer that can be cured?

Likely not you...unless of course you are unlucky enough to have the HPV P16 virus and cancer yourself.

This blog is the result of a distinct lack of info about HPV cancer , especially tonsillar cancer, in an active male popluation.  Cispaltimum is by all acocunts nasty stuff to be putting into your body.

.

There is never enough time! 9/22/2012

written the week of 9/22/2012
I only know because I repaired the deck the next week.


The thought that has invaded my mind from day one of the diagnosis of cancer is "there just isn't enough time".  Not what I thought would be running through my mind that is for sure.

Not enough time to get the deck repaired or the roof shoveled off.  Not enough time to get the work in my shop done.  Not enough time to get the blog posts written I want to do.  No enough time to climb or go back to Chamonix.

I have often enticed friends out by, "No one ever said they wanted another day at work on their death bed!"  I've changed my mind on that one.  I love my work, customers and friends.  I like what I do and am proud of the end result.  I'd like to finish it all.  Some how it seems even more important to me now to get it all done.   

No reason I can't, but I was surprised by the panic that in set in being unsure I would be able to.

two days previous 10/15/2012

written Oct 15 2012

It is Saturday.  Monday is the first day of Chemo.  Big day.

I thought anyone who fell down climbing was an idiot.  Then I fell down.

I've ignored cancer...kept it farther than arms reach.

Now the damn disease is smothering me.  I wake up and head to the bathroom...half way there I realise i have cancer.  WTF is up with that?  I'd like to put it to bed permanently.

So with one IV your life changes forever.  The start of RAD and chemo.  Small steps to a huge dose of poison.

If I knew the eventual outcome would I go Monday morning?

If it was anything like the dark days after my bicep surgeries likely not.   Wanting to make fish food is not the place I want to go again.  Then I had someone to blame, some one I wanted to hurt..give a little pay back.  This time it is just good old mother nature.

A bad storm, a white out, and unplanned bivy.
But then just how had can 7 weeks be?  My guess is not that bad in the grand scheme of things.   I may live to regret that thought.  But I'll live...for a while yet.  No one gets out alive.

I keep telling my docs i am different.  I have everyone around me convinced (except the docs) that I am "special".  But I know the truth.  I'm a coward and this shit scares me.  Not the 7 weeks.  Good drugs should carry me through that.  It is the long term aftermath of the seven weeks.  That scares me.

Fuck'um, I am different.  This will be over shortly and I'll move on.  I always do.

the gift that keeps on giving 2/10/12

For those that may think there are Cancer survivors.   This is why anyone with half a brain will question the chemo and radiation protocols.  No matter what they tell you...all these people (the medical folks) are just practicing at this no matter how confident they seem.


2/10/12

"Mark Augler’s doctors were predicting that the 52-year-old father of two would die a couple of weeks ahead of his baby daughter’s due date.

Mark was diagnosed with colon cancer last April. He underwent surgery and six months of grueling chemotherapy. In November doctors gave him a clean bill of health; the cancer appeared to have been eradicated. But a troubling yet puzzling new symptom emerged: Mark began having trouble breathing. The problem grew worse over the holidays and became so intense that he had to go into the emergency room on January 3rd.

At the hospital, doctors told Mark that he had developed pulmonary fibrosis, a rare complication of chemotherapy treatment – a scarring and subsequent thickening of lung tissue usually seen in coal miners and asbestos workers.

Initially, the Auglers had hoped Mark could go home with an oxygen tank. Pulmonary fibrosis, though generally irreversible, does not progress to death within a matter of weeks. "He thought he'd be coming home in a few days with an oxygen tank," said Diane Aulger, who lives in The Colony, a suburb of Dallas.

But on January 16, doctors told the Auglers what they feared most: Mark had about five to six days to live. It was then that he expressed the wish to see his as-yet unborn baby. The baby, however, was due January 29, a week past Mark’s projected longevity. Diane had originally planned a natural birth, but when doctors suggested an induction to fulfill Mark’s dying wish, she didn’t think twice.
The induction was scheduled for January 18th, and the hospital arranged an extra-large delivery room to accommodate Mark, Diane, newborn baby Savannah, as well their four other children. "Our beds were side by side," Diane said.

It was a momentous gift; Mark fell into a coma on January 21st, and he died two days later."


Boy would I be pissed.

Climbing again, late March 2012


The photo is me leading on Carlsberg Column WI5, in Yoho Nat. Park Canada
Late March 2012

This is the poster I am having made for my Oncology Department at Swedish in Issaquah.  Have yet to see the final version but this is close enough.  It is not much but I know I could have used something to focus on when it was really bad, mid chemo. 

Why now? 4/10/2012

Last August I was diagnosed with stage IV throat cancer.  Today I am Cancer free.  But the journey to get here was bleak and seriously nasty.

All the previous posts were comments I made during treatment.  None of them pretty but as much as I was willing or able to write down at the time.  Editing them now has changed the dates on which they were written which is sad.  I would have liked to have kept that record so I have gone back and dated them as best I could.  Some are easy others not.  But I have a good idea of when I write them by the comments I made..

Not sure what I will do with this blog now.

I have a daily journal for the last year that I will eventually incorporate into the blog and a hit list of topics I want to address now that I am getting stronger and able to face the memories and just how really scary all this has been for me.

Cancer has become a huge part of my life.  Which i find surprising and annoying all at the same time.   Literally not a moment goes by that I don't know it visited me.  And hey the dude was uninvited.  How rude is that?

Today was my first run..in.well over a year.  Totally numb hands and feet of course but it was an incredibly fun 25 minute run  :)

It felt Zen like.  Adroitly up hill and down dell.  My God, it was good!  Thank you!

Which is one reason I wanted to celebrate my own Cancer today by publishing my previous thoughts.
Doing so wasn't easy.  But given enough time most of our human suffering fades from memory.  This journey is much the same.  I don't want to forget what I have gone through so I written it down.   I'll write more.  As the chemo fades from my system I'll purge some of the memories as well. .

There were some dark and terribly bleak times in the past 9 months and a few good times as well.  I will explore some of that here in the near future.

But today I celebrate LIFE!