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.

Day of the Triffids

I reached out to a friend who has two decades of head and neck oncology experience.  He said, "If I had to make a list, lymphoma would be number one.  These things dissolve if you throw seawater on them."   I could have hugged the man.  Forget statistics.  *That's* the way to put a perspective on something!

This week ends my second Cycle of chemotherapy.   Or, the end of my second month.  Next week, I have a lung function test performed again. (I think as a result of my concern over my initial test.  While not bad, my smoker's history showed.)  So, that is probably routine.  The other, less routine, is my next PET scan.  That one is important.  First progress report.  And of course, better is better.

I feel positive about it.  I'm also nervous about it.  I've shared to some how astonished I was that the lumps in my neck seemed to start melting within the first week that I started treatment.  When I mentioned this to Helen, she looked at me warily.  I really didn't quite believe it either.  Really?  Is this what it feels like? That quick?  But, after a few days, she could feel it, too.  Floods of emotions during that time.  Finally, I think relief and resolve at a proof that my mind, body and science were all working together.

I feel my neck from time to time, probing for a sign of its presence.  But, I can't feel anything there.

Seawater.

(My Day of the Triffids, is based on the 1962 movie.  Not, the darker novel on which it was based.)

(Photo: http://www.redbubble.com/people/capturingsmiles/art/6310176-sea-shells-washing-up-at-from-atlantic-ocean )

"It's Bath Time!"

I'm efficiently moved right into the system.   A youngish, short haired male technician brings me back with courtesy and mild professional curiosity.  "Your practice is where?"  "Oh, yes, I know the building."  Polite.  His day. My day. Routine.  My expectations are neutral, leaning towards it's nothing, but balanced against a concern that it's otherwise.

Explain, lie down.  Marker on the spot.  Inquiries. Where? I point.  He sticks the nickel sized adhesive-with-a-bead over It.  "So we know where to look."

Instructions.  Breathe.  The table moves.  A momentary reverse image of the moment.  The nameless placeholder image, made up of multiple television shows and movies scenes of the character sliding into the CT. That is me.  My conversational CT scan mental image always has a white fluorescent bulb shining down on the patients face.  There is none of that here.  It's all warm and amber tone.

Different technicians come out.  A line from The Good, the Bad, and the Ugly comes to mind. "One bastard goes in, another comes out."  I chastise myself.  Tom Hanks may live by Godfather quotes in "You've Got Mail", but a lot of mine seem to come from Sergio Leone. I'm living movie and television moments. They get me up, telling me to await my results. One mentions wanting to remove the bead. Routine.  Friendly.  A little too friendly?

I hear Richard Pryor in my head.

It wasn't that bad.  I exaggerate. They were professional.

"It's bath time, Richard!"  That, we know something bad about you that you don't so we're going to act reassuringly normal, voice.  I have a moment of wry amusement followed by sudden drop in my stomach.  Are they?  Or is it just me?  Faithful, I make my decision.

I took the forgotten and neglected bead off, myself, in the parking lot and it was about an hour later that my doctor called me.

Blood tests today.   My WBC is normal, which is good.  But my Hemoglobin has fallen back into the anemic range.  I have mixed emotions about this.  I will ask my oncologist next visit about whether this is an expected type blood test for this stage of treatment, and why.

The Rapture of my Hair

Well.

It's Judgement Day in the hair department.  I have a mixture of emotions.  Over the years, I've been curious about shaving my head.  Watching my hair lose it's battle with my advancing forehead, I pondered the bald look.

A simple thing against cure, I'd have no problem giving my hair away permanently in the exchange.  And, I think, a pinky. Pinkies are under-rated.  They are pretty strong.  You can grip pretty hard if you want to between thumb and pinky.  Both pinkies.

So, it's not the hair.  It's the proof of reality coupled with the desire to see this as affirmation of chemo's effectiveness. When I think too much about it.

Regarding my purely physical body,  I think this is pretty funny.   It's really not the hair I'm curious to see what I look like without.  It's the eyebrows.  I think that's hysterical.  I *might* have one day shaved my head.  But I've never even considered shaving my eyebrows.

So. Chemo.

CHEMO. CHEMOTHERAPY. CANCER. DEATH. life.

Maybe it's just me.  But that's the pre-cancer view I had on chemotherapy.  Yes, life was in there.  But, ...man.

It's an ugly word to hold so much hope.   Chemo just isn't a word that brings images of flowers and kittens to mind.  Or playing with your children, or friends. Or riding a bike, or running.  Chemo does not create envy. It's a word wrapped in fatigue and vomit.

Mixed in, there is a degree of fear that it won't work.  That the person you know on chemo is going to get very sick and they might die anyway.  I thought that way.  I see that some of the people I talk to now, think that way about me.  I get this little gut, what?  But, my cancer is 80% curable!  Still, I get it.

CHEMOTHERAPY. LIFE. CHEMO.                                    cancer.                         death.

I've never quite felt like having hit the lottery before.  Once cancer is a given, forget wishing it was otherwise: what matters is what you have and how far has it gone?   I have Hodgkin's Lymphoma IIA.  And that means that chemotherapy is my best friend.

Still, it's an unfortunate moniker.   But, now Chemo brings to mind images of running with Sarah, biking with Helen or, doing SCA medieval combat with my friends.  Chemo will kill my cancer and, maybe, it will make me sick.   But compared to what I'm going to get from it, nothing has been that bad. It's been...factual.  I kind of look forward to my treatments and the aftermath.

I've also been associating the word Chemo with how I feel about Milkshakes.  Try it, it's pretty good!

Make it So.

While I lay in the operating room, awaiting the implantation of my port, I realize I am looking forward to the moment when I will make the jump through hyperspace into my future consciousness.  This is new.  It's always been a Blue Jaunt before.

Just before the jump, mask in place, oxygen flowing, hair net applied, I gaze up at the ceiling and think, “Heh, this is a unique moment I never pictured being in.”

I exit hyperspace into the physical coordinates of the Recovery Room.  The nurse, seeing my arrival, welcomes me.  My pre-chosen, post-travel meal arrives.  When they take the port out, I’m getting two of the chocolate coconut brownies.

From There to Treatment - Inside

Thumb up, thumb down.  Dying is no longer a theoretical, but a real and present possibility. Each test is another trial where, wrapped tightly, I present myself for examination. I live with a new kind of fear of my body. As if I am waiting to be told whether the vehicle that carries me about is rotted out.

"Blow up the world?", exclaimed The Tick, "But, that's where I keep my stuff!"

For most of my life, my body and I have had an ambivalent relationship. Only in the last few years have we begun to reconcile. Feelings of betrayal mix with fear. My body was thinking of dying out from under me! Can't we talk about it? I love you!

I keep feeling my neck and the enlarging growth there. I'm sorry, Uncle Charlie! Anguish, hope, fear, resolve, sadness all underlaid with surreal horror. It got me. Jeez. Then, back to the business at hand, the next day, the next test.

The results are in, each weighed and measured. I have cancer. But, I am lucky. Science is on my side. I am fighting with the odds, not against them.

From There to Treatment - Outside

August was spent being tested and seeing an oncologist.  The diagnosis was in by mid-late August: Hodgkin's Lymphoma.  That helped a lot: there's a  lot of hope in that diagnosis.  More testing.  Final Diagnosis, classic Hodgkin's Lymphoma, Stage IIA.

Starting with a CBC blood test and a CT (with contrast) with positive results, the path to this diagnosis was: A needle biopsy to positively determine malignancy and gross differentiation. An excision biopsy under general anesthesia to remove a lymph node for fine differentiation.  A PET/CT scan to determine the extent of cancer activity throughout the body.  A bone marrow biopsy. 

So many times I've commiserated with friends about the time from their diagnosis to treatment. It's a time of hurry up and wait. This is just how it goes. It's okay, it doesn't effect your outcome.  Everyone goes through it.  It's natural to want to get started treating tomorrow.  You'll get started soon enough.

Campfire Stories

"How did you find out?"

I had a few lymph nodes in my lower left neck that became enlarged. They didn't change or grow or anything.  At the time, I was seeing doctors for a possible skin infection. Enlarged lymph nodes would have made sense. When everything cleared up and they didn't go down, my doctor checked them. Total time: about four months. He ordered some blood work and a CAT scan.

Then things got weird.

Every journey of a thousand miles, etc...

I've decided to post my thoughts and updates here on how things are going.  The list concept is untenable. Here, I can speak to everyone, family, friends, clients, patients, as individuals, about what’s happening and about the journey that I and my family are on. 

For everyone coming here who has just found out: I want to say first that Hodgkin's Lymphoma is curable 80% of the time.  While there are no givens, I believe, Helen and Sarah believe, and my doctors believe, that I am going to be cancer free and cured at the end of my treatment.  Everything we live and that I share, is with that goal in mind.

Feel free to share and comment on any post.