End of the Tunnel.

Well, today was the last day of my radiation therapy.  I missed a day last week and didn't realize they add it onto the end.   So, that's it.   Done.  Now, it's recover.  

Getting radiation therapy is not so bad.  But, no matter how good it's supposed to be for me, I haven't liked the idea of it.  It's the kind of it's bad for me, but good for me, but yea, it's bad for you kind of good for you.  There's strings attached.  So, while I really embraced chemotherapy, I've been more ambivalent about radiation, despite my belief in it's necessity.
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I do get to know my partners a slight bit better while I wait my turn.  For one, we're fully conscious.  That helps immensely.  Mostly, there are the same two men whose appointments bracket mine.  One is a very elderly gentleman, very thin, with a cane.  Very polite, slightly stooped, his hair is very cross cropped.  His skin, papery, but of good color. He is friendly and although seemingly frail, he emanates good will.  He acknowledges my greetings with a faint European accent and reads the magazines while we wait.  My other partner is a heavier set gentleman.  Stout, with a full face and mustache, he's talkative and has the hint of a curmudgeonly view on medical bills.   He's knowledgeable about herbs and we talk about this and that.  This is the men's side.  Mirrored to the left is the woman's area. It's divided by a low partition and a mobile of cranes.  On our side, it's just us men.  A night of cards in 20 minutes.  The cranes kibitz.

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Conversations end mid-sentence, "...well, see you later.  Good luck." Each of us has been called first, second or third, seemingly irrespective of when we arrive or our appointment times.  I haven't figured it out yet and it remains a mystery.

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The sign says "Please state your name out loud when you reach this point."  Dutifully, I informatively state, "I'm John Dowling."   They say thank you.  

It's not really Helen waiting for me.
It's really my treatment technician. ;)

A few minutes positioning, lock in, and my technicians leave. The table dials itself into my program. Things move and position themselves.

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No movie moment for me.  I'm fully present.
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Bumps, clicks and light bangs herald the humming start of my treatment.   I have two persistent sensations: I get an unpleasant metallic taste in my mouth and, on really dry days, the hair on my arms feels like it stands on end and.




Treatment takes One Long Slow Deep Breath, which also takes care of the taste.  They said some people see a blue light.   I didn't like to think about what you had to have and what you were having radiated to see the blue light, so I don't have a shred of envy.   


Change and on my way.  Forty minutes.  Easy as pie. 

But, you know, too much of a good thing, etc.  I'm happy to be done.

Last Chemotherapy.

Denise, who does the scheduling said, "What are you going to do now, with all this time on your hands?"   

As I looked for an open chair, I thought it was unusually chatty today.  I've found that chemotherapy is a distinctly friendly, generally upbeat, social and communal experience.  But it's not what you would call noisy with conversation. Everyone's talking today it seems.

This suite is more open, there is one to the left which, being closed in, is more intimate. You don't want the chair second from the left. That foot rest is awkward.

Some time after I took this photo, a thousand paper crane mobile with a story card arrived.  The card explained the story of Sadako and the Thousand Paper Cranes.   It's now behind the chair on the far left.  

It's very pretty.  

Back in the 60's, before Sadako's story was known, my father made a paper birds, similar to those cranes for my brother Brian and I. We called them "paper birds."  They weren't cranes, though they look almost alike, because the wings were folded differently.  I was in love with them because when I pulled the tail, the wings flapped. This amazed me.  And my dad could take just a plain, flat piece of paper and fold it to create this magic paper toy.  When I was in second or third grade he taught me the magic, and I showed a friend. And for a while the school became a rookery of paper birds. Who could make the smallest? The biggest?  Pencilled decorations on blue striped yellow paper.  Easily hundreds just between a few friends any myself. I still like making them.  I wonder how many kept this little magic going?   How many birds have we all made?  Does the pigeon count?

I recognize faces.  I've had a hard time with names.  There's a dose of IV benadryl first thing, and pretty soon it's lights out for an hour or two.  When I'm awake, I'm surrounded by peaceful sleeping people. So, though we've introduced ourselves and re-introduced ourselves, I often don't have a name for their face.  Thank God the nurses wear name tags.

It's also a lot of fluid. There's a constant stream of us, forgive the pun, rolling our IV's with us to the bathroom.  A piece of laminated orange paper with black lettering hangs on the door by a loop of yarn.  One side says "Available",  "Occupied" on the other.  We flip it back and forth. 

So, between me falling asleep, them falling asleep, I'm going to the bathroom, they're going to the bathroom. Or, busy getting a snack from the basket.  A cookie, piece of candy or cracker.  Chips, juice or coffee.  A family member or friend is there, maybe.  Conversation tends to be sporadic and, on any given topic, brief.
Today, Chemo started about eleven.  When I woke up,  Sarah was in the chair next to me and it was one o'clock.  "Hi." And there is no nicer sound to my ears. "Hi."  "I just got here." "Oh. I just woke up." "I know."  Laugh.  Having entered the hospital a different way, she shares her adventure in getting the suite.  Helen arrives and that's it. We're all here. I'm glad.

Questions. We chat. Sarah asks about the medications.  I go to the bathroom. A few people we know stop by.  It's amazing the people we meet: friends of friends, parents of friends, friends.  There's a lot of cancer out there.  Then, Sarah is off to do school related things.  Helen, back to the office.  Half an hour later, my IV pump beeps and Karen says, "That's it, you're all done."  "Deep breath." She removes the 90 degree Huber point needle from my Power port.

I'm eager to leave, but ambivalent about departing.   It's been kind of a home for a while. There's a friend from before she or I had cancer here for treatment today.  Small world. I go over to the sister suite to say good bye to her.

General goodbye to my seat mates and good bye to the nurses.

It's three o'clock, and with Grace, my last chemotherapy is finished.  On to radiation.

Up for Air

I've been out of touch.   It's been a "no news" is good news situation, health wise: things keep going well.  And experience wise, it's been a little difficult to process.

They warn you that the effects of chemotherapy over time are culmulative.  I nodded that I understood.  Of course, I didn't.  Even with all the great news test wise, the physical effects add up.

Last chemotherapy is this Thursday.   Helen and Sarah are going to come, which I'm happy about.

Random Things

It was Lord of the Ring Thanksgiving Weekend on Encore. (HD!)    Friday was treatment day.  So, the rest of the day is low key, tv, email, facebook, etc.  I loaf.   LotR on in the background.  In my office Saturday, not feeling well, attempting to work, LotR on in the background.  I think I have gone through the trilogy twice this weekend.  The *extended* versions, too.


There was nothing special about the conversation.  Back and forth on the spelling of the city.  "D-e-r or d-r?" "U or e?"  I was starting a new client.   The normality of it was startling and, kind of nice.  So many conversations have the open, or unspoken, topic of my health woven into it.  And, honestly, it's been a pretty hot topic on my own conversational plate, too.  Yes, no doubts, I have talked about it, too.  So, it was startlingly strange and nice to have a "normal" conversation.  I'm forgetting what they felt like.


I looked up my projected end of chemo dates.  Nothing's in stone, but maybe...early January?  Then, 17 days of radiation and maybe...done by Groundhog Day?  This is kind of exciting to think about.  Somewhere in there, they'll be taking my port out, too, I imagine.  Hmmmm.  There's a question for next visit.

On the topic of that client.  I put together my welcome packet for them tonight and, just as I'm about to seal it, I realized I hadn't put a business card in with it.  In fact, I hadn't been doing that for months, come to think of it.  Funny.  I don't even know if I have any of my Health Coach business cards around.  What a sad fact I had just found out.  Suddenly, it's very important to me to find my cards and send one out.

In my laptop bag, I grab up a small stack of discovered cards, wrapped with a rubber band.  I humored myself  as I drew my cards from the bag, with a vision of Theoden King.  Ah, my arm recovering it's old strength, as I wielded a card onto my letter!

Pausing for Breath

So.  The words of the day have been "pensive".   With a bit of depression.  Or, the other way around.

I've been able to talk about it a little bit with Helen and Sarah.  A very difficult thing.  They're understanding, though it effects them, too.

My doctor says it's normal, too.  So, there we have it, assurances all around.

For now, as long as I'm not in bed with the covers over my head, or my family doesn't want to commit me, I prefer not to medicate.  I'm functional, just a little demotivated temporarily.  It seems like the right thing to do is to let it play out.   I've got tremendous upside potential, I just need to wait until my emotions re-sync.

SPF 2000

So.  Let's call it bulky.  Accepted.  I feel better about it since I have the good PET.

On another front, we saw the radiation oncologist this week. I expected a recommendation for radiation from a radiation oncologist.  To be cynical, "if your tool is a hammer, everyone can start to look like nails."  However, he made a compelling case that comes from some pretty deep experience at Sloan in the Hodgkin's field.

It had been floated that with the good PET scan, six rounds of chemo with no radiation might be an option.

And he made clear that it was.

But there's a significantly better response with radiation.  So, with the bulk factor shading things, I don't see any reason to leave points on the table.  Radiation it shall be.

I'm supposed to get a little tan over the site.

Decisions

Now we are faced with decisions.   And also, questions.

First, for my doctor.  My file was referred for an opinion from an expert at the Cleveland Clinic.  While the information was good, more questions than answers came out of it.  The most important being that the expert said I have "bulky" disease.  This is a major blow to my psyche if true and I need to regroup and refocus.  Bulky disease is one of the "unfavorable" factors.  I don't like the sound of that at all and it was generally considered a good thing when my own doctor told me that he considered the mass in my chest significant, but not "bulky." 

So, just how bad is this bulky thing, anyway?  That's going to be a question for this week.

Also, while getting props for a good first follow-up PET, the words in conjunction with one of my treatment options were, "probability of relapse would be high."  I hated to hear that.  I wanted to hear that my first PET scan meant "no chance of relapse."

Now, I'm not saying that what I wanted to hear was realistic.  But it was ugly to hear of any instance where this thing would come back and I spent a few days very dissociated while I adjusted my reality check equipment.

On another front, Helen and Sarah finally got me to an introduction to Yoga at their yoga studio.  This is a pretty serious studio with a set of widely known teachers.  It was very enjoyable and geared to beginners. But it was a serious work out.   I felt pretty debilitated at the start of it, but very much better by the end.   It's not something I had seriously considered before.  But I may give it at try.

Bummer

Ethan Zohn's Hodgkin's has returned.
I think he had one of the bad versions of it.  He needed a stem cell transplant to be cured.

Before, that would have been an "Oh.  Too bad, he seemed like a nice guy.  I remember him from winning Survivor and when he had it the first time." 

Feels different. 

I'm truly sorry to hear of it.

Good News!

"Good News Everyone! I'm still technically alive!" is my favorite Professor Farnsworth Quote.

Good News, Everyone!  

My PET scan is NEGATIVE.

My body and I are alone again.

It's the beginning of being whole.

There is still mass left behind.

But no activity can be detected.

I'm told that scar tissue can persist.

My PET scan is NEGATIVE.

School

I have done all that I can today and it's time to take a break.  The business of being positive means realizing that you've gotten behind on a ton of stuff you have to catch up on.  I'm done for the day and, maybe the week.  I was trying to clear the decks, get caught up and, maybe get a little ahead as this Thursday is Chemo Day.  Well, that didn't happen.  But, I've got enough done that I can reschedule the rest and feel I've gotten the important stuff out of the way.

Also, this Thursday I've got a new test result coming up.

In college, I loved the anticipation of an exam grade.  I was pretty used to passing grades, and usually passing high enough to keep me an honors student. (Don't ask me about my childhood, high school, or even early college academic years though.)

Thursday is the results of my latest test: a PET scan.

Because I did well on them, I liked tests.  In college and in the doctors' office.  Once I got over my childhood asthma, I didn't usually flunk doctor tests either.  I didn't usually do poorly on any physical test, except perhaps a fitness test.

I didn't realize quite how much I took all these passing grades for granted until I got handed a few F's back.  Cat scan, Pet scan, blood work.  It was a shock. Those questions weren't in the notes!  Another college memory surfaces of a blown exam and that now-what? feeling. How the heck did I blow this?

So, now after a few months of remedial school I got my retake of one of  the biggies.  I've always liked exams so I'm nervously looking A.