Monday, April 29, 2013

One kind of list

As cancer treatment recedes into the not so distant past, I find myself with less and less to say here.  There is not so much to describe, really.  I run, I swim, my burns are fading.  I feel physically normal!  The exception would be the wierd chest muscle configuration that I feel while swimming, but in the scheme of things that seems small.

Here's a funny story:  My hair has been growing in, which is nice, but very, very gray, which is not so nice.  There is nothing wrong with gray hair, don't get me wrong.  It's just that, at just shy of 50, I simply DO NOT want it at this time.  So...  Given that my hair is about half an inch long, I did not want to spend the dollars going to the salon for a color.  Instead I opted for the $7.99 box of Clairol at the grocery and in about 15 minutes the deed was done.  I chose medium golden brown and in hindsight I will go with plain old medium brown next time, but fortunately it will wash out in four weeks so I can regroup and try again.  At least it is not gray any more.  My son, who is colorblind, asked me tonight at dinner why I made my hair green.  (Our dog Zoe, rest in peace, was reddish brown and white in color.  When we stood outside and buried her ashes back in 2005 and forced our reticent children to say something nice about her, Tim said, "Zoe was a good dog.  She was green and white," which was when we learned how he saw her all his then seven-year-old life.). Depending on the shading he sometimes sees brown properly and sometimes not.  My hair is actually brownish goldish sort of, but to my boy, it's green.  Every time I am in a room with him, it occurs to me that what he sees when he looks at his mother is a middle aged badly put together St. Patrick's Day partier, and every time this occurs to me, I'm forced to smile.

I call myself post-cancer treatment even though I still have Herceptin infusions and will begin taking Tamoxifen this week, but I seem mentally to be in the typical post-treatment that I've read about.  I'll give you a little list of the feelings through which I fluctuate in any given couple of hours:

Full blown panicked
Sense of dread and/or impending doom

I'm sure there are more.  The social worker at the hospital in Portland gave me a bunch of breathing exercises to do to calm myself.  They really do help, sort of.  So onward and inward in an attempt to re-enter some iteration of a normal life.

Saturday, April 20, 2013


Well, it's been a while.  Last week I saw a death notice in the paper for Judy's (van person) husband.  I knew he had emphysema and was pretty compromised.  Judy had her last radiation the day after I did, and a few days later her death notice appeared as well.  I wasn't shocked that she died; she certainly had no illusions about her chances.  I was shocked that she died so quickly.  I am sad that she spent half of the days of her last three weeks riding the f-ing van instead of doing something else. Every day I have been looking for a notice about a service for her, but I haven't seen anything.  Her daughter is my age, and has just lost both her parents in the space of a week.  Judy seemed to have a lot of organizing she was trying to do, for her daughter and her husband, and her time of doing that, which ostensibly the radiation was supposed to prolong, was cut short.

I know that many people all over the world live daily with the fear and the reality of the horrific scene in Boston this week, its anticipation, its occurence, its aftermath.  But I have never been in a war zone.  I have, however, been at a marathon finish, and so my feelings about it spring from there.  In 2009 I ran a marathon.  The last several miles felt a lot like labor and childbirth.  It was painful, disorienting, and strangely ecstatic all at the same time.  When I finished and stopped running I started crying.  What my body and my brain were doing at that point were completely out of my hands.  After about 20 miles of exertion, a body has used up all of its store of calories, no matter what you put into it along the way, and the disorientation during those last miles is a biproduct of this physiological process.  It is, of course known as The Wall.  What was immediately so sad, among so many other things, on Monday was the timing of the explosions.  The elite athletes were long finished, and at a little over four hours after the start, the majority of amateur runners (like me, though not like me, as in Boston you have to qualify with a time, which in my wildest dreams I never will) would be approaching the finish, with families and friends waiting.  It seems clear that somehow the young men that set up the scene must have known that four to four and a half hours would net them the most people possible.  Did they also know about the state of the runners coming in?  The disoriented, confused joy?  The subsequent stiffening chill that the space blankets take the edge off of, but not the deep interior?  I wonder if the chill will ever leave those runners and their families.

Meanwhile, back in our little outpost at the other edge of the country, I am feeling pretty back to normal physically.  Ramping up swims and runs, while my radiation burns fade away.  Mentally it is a different story.  I stand in front of that clean slate to which I have referred many times and prepare to start something brand new.  More on that later.

Thursday, April 11, 2013

Last day on the van

As I was getting off the van today for the last time, Smoking Barb said the most awesome thing to me.  She said, "I hope I never see you again!"  It was the nicest and best thing anyone could have said at that moment, and my only appropriate response was "Same to you!"

Tuesday, April 9, 2013

Safety nets

While I have written about my gratitude for my own safety net, I am blown away by some people's seeming lack of a safety net of any kind.  A guy got on the van the other day for his six week follow up appointment.  He was on the van for the first couple of days I was, finishing up his radiation cycle.  This week I chatted with him a bit.  He has some sort of cancer in his throat, jaw area.  When he was diagnosed in Long Beach,WA he was given the choice of surgery or chemo/radiation.  First of all, the whole choice thing on these big questions really, really bugs me.  As a lay person, I assume and hope that the professional person I am consulting, i.e. the medical or surgical oncologist, has a pretty good idea what he/she thinks is the best course of action.  I learned this after switching surgical oncologists and being given a very strong recommendation for neoadjuvant chemo by the new doctor, where the first doctor told me to go home for Labor Day weekend and decide which way I wanted to do it.  This made me extremely uncomfortable.  I understand that within the realm of cancer treatment there have been many choices that have been mine and could not be made by the professionals, like whether to have reconstructive surgery or whether I wanted to do radiation in Longview or Portland.  But for big medical questions I am pretty sure if the doctor was treating a relative they would likely have a recommendation for how to proceed.

Back to the van guy, Chris.  Given my caveat of knowing nothing about his cancer or his case (this has never stopped me from having an opinion), I thought it was pretty huge that his doctor did not recommend to him what to do, or what he would do, or whatever.  But here is the kicker.  Chris told me he decided to just have the chemo and radiation because he would have no way to get to Portland, where the surgery would have to take place.  And he added, he knows nothing of Portland and so given that it wasn't really an option for him to go there for surgery.  I was stunned.  And maybe this exposes my privilege or whatever, but Portland is two hours away, maybe two hours fifteen for Chris, and I wondered about his life, having not been there, ever?  So... He has had two rounds of chemo/radiation and was told at his follow up that his cancer is not fully gone.  There is no surgical option now because he wouldn't be able to heal due to all the radiation he has had.  He can try another round of chemo and that might be it.  Now, I have no idea really whether his cancer would have played out this way anyway or not.  I am just in disbelief that this human being simply had no safety net, public or private, to help him out.  Shouldn't a rural oncology clinic have a system in place to help a person in these situations?  Shouldn't people have people in their lives to lend a hand in a crisis?

I have ridden the van to save the gas money and put fewer miles on my car.  Others have no alternatives.  It is just hard to swallow, that some people are that alone.  As I said earlier, I have little information about this man, his medical situation or the presence or lack of loved ones in his life.  I only have what he stated, matter-of-factly in a brief conversation with me.  He shrugged a couple of times and said, guess we'll just see what happens, like he was talking about nothing more than a basketball or football game in which he did not have much of a stake.

Wednesday, April 3, 2013

You just never know what is going to happen...

Well, my counting has been wrong for a while.  It seems Dr. Kim forgot to tell me, yes, forgot to tell me, that I am having 33, not the 28 radiation treatments he told me I was having.  Apparently I am having the 28 and then five additional treatments to the lymph node area only.  So.  I will be riding to Longview through next Thursday, not tomorrow as I had thought all these weeks.  A small bump in my bumpy road, but yet another panic inducing quake to my already shaky ground.  It is amazing how changes (or not changes, just the plan I am apparently the last to know about) can throw a person off.

Anyway, another week of the van, and luckily Jon planned the SD trip a couple of weeks out from treatment so that is still post radiation.  Embrace the suck!