Voiceless for a while

This morning I was looking forward to my appointment with Dr. Winkle, who is an Ear, Nose & Throat specialist.  His job was to look at my vocal cords and see why they are not working.  Since speaking is a very enjoyable part of a conversation, I was most anxious to get to the bottom of this.

My brother-in-law,  Bruce picked me up at 10:00am sharp and we made it to Dr. Winkle's office with all of our ducks in a row.  It was not a long wait before I was sitting on an examination table.  I immediately liked Dr. Winkle and his nurse and he got right down to business.

He first examined the inside of my nose because the nose is the door to the throat which leads to the vocal cords.  We talked "snot" for a bit, one of my favorite subjects and then he cleaned out some of those hard-to-pick interior corners for me with a suction device.  Man, I am clean as a whistle now!  He sprayed some stuff in there which anesthetized the path of his scope.  It tasted terrible but I could tell it was doing what it was required to do.  He then brought me into another room with his hi-tech camera on flexible wand.

It actually wasn't all that hi-tech.  I noticed right away that it was an old NTSC monitor he was using and he confirmed that the gear was vintage from the 90's.  It felt nice to have a conversation between a couple of guys who are super-comfortable with 90's video technology.  It did use fiber-optics but, yep, that's been around for a while.  I respect a man who uses tools that work just fine and doesn't feel like he needs the cutting edge "latest" expensive gear to do something that works great with the stuff he has. Dutch thriftiness.

 It took him only a few seconds to steer from my right nostril, through the channels down to the area where the vocal cords reside.  He had me vocalize "heeeee" a couple of times and then he pulled out. Prognosis:  My left vocal cord is paralyzed, most likely temporarily, since the nerve was not severed, only stretched.  It could be that way for 6 months. So essentially, my voice is the sound of one hand clapping.  Dr. Winkle sees this in about 10% of esophagectomies and he has a little procedure up his sleeve where he can spray some cellulose on the non-working cord which pushes it close to the working cord.  To use the clapping metaphor, this spray will position the bad hand in front of me so when I clap with the good hand it makes a noise.

On May 9, I will go into St. Mary's for a "microlaryngoscopy with left vocal cord Cymetra injection".  He says it takes about 45 minutes and I should be talking when I come out of it.

So I'll be sounding like an angry old Clint Eastwood for a bit longer.  The cough seems a bit more under control but it is still aggravated by talking. Karaoke will have to wait.

Nice

Cell phone: ring
Me: "Hello?"
Cell phone: "Hello, I'm calling from the breast cancer awareness center. How are you doing today?"
Me: "You've called my cell phone and I never give money to phone solicitors."
Cell phone: "Oh, we're not asking for money!  Your voice is really hard to understand?!"
Me: "Yeah, I have cancer and..."
Cell phone: click

Gearing up for next phase

Remember how in the Grimm's tale, Hansel and Gretel were locked in a cage by the evil witch to be fattened up so they could eventually be properly eaten?  That's sort of the way I feel.  It's all wonderful to be healing from surgery.  But as I have mentioned, as soon as I am well enough, aggressive chemotherapy starts.  I sort of have kept my blinders on to the next phase, preferring to get through the first phase.  But Dr. Scott gave it to me straight, yesterday: 6 weeks of inpatient chemotherapy followed by 2 weeks of outpatient chemo.  That's right folks; over a month in a hospital room strapped to chemicals that kill all growing cells.  And that is just Phase 1 & II, designed to invoke remission of lymphoma.  Then I will be turned back over to the esophageal cancer people who don't usually like to wait this long before they start their chemo/radiation regimen.  It's going to be a long, unpleasant spring and summer!

Why in the hospital?  Dr. Scott explained that as various functions shut down and infections set in (my immune system will temporarily go away) I need to be in a place where people can instantly recognize problems and fix me up right away.  How soon?  I'll probably start in 2 weeks.

Wait... 2 weeks?!  I was hoping to squeeze in a little life in between; maybe work up to being able to eat a slice of pizza.  Perhaps a trip to Fiji?  Dr. Scott explained that typically they would have started this therapy immediately upon discovery of acute lymphoblastic lymphoma.  He said that in 22 years of practice, he's never had to set aside treatment while he waits for surgery for a different cancer to heal before digging in with his cure.

So, 6 weeks on hospital time. I fear for my sanity.

Dr. Scott has been kibitzing with a guy named Dr. Harry Erba from the University of Michigan Hospital and Medical School.  He's kind of a Midwest lymphoma guru.  Between the two of them, they hatched this treatment plan.  Which brings me to the concept of second opinions.

EVERYONE recommends second opinions.  They totally make sense.  Even Dr. Scott says they do.  He got his second opinion from Dr. Erba.  You want confirmation that you are doing the right thing.

But I am an intuitive guy.  I can read through what Dr. Scott is saying to what he is thinking;  "Second opinions are the right thing to do but time's a-wasting.  Chuck is going to find out that this is current recommended treatment for this cancer".  It is a small e-world and it doesn't take a trip to the library and several written correspondences to find out what has been working best for treatment of acute lymphoblastic lymphoma.  These experts all communicate.

So taking it a step farther. Let's say I package up my data and send it to another busy, expert doctor who has never met me.  It'll cost me some money because likely it is outside of my insurance.  After taking some time to examinie my case, he or she concurs with the treatment plan and I feel better about proceeding as planned, albeit a bit later and poorer than planned.  Or I send it to that expert and he or she says, "No, I think you should do this other thing."  Then what?  Get a third opinion perhaps?  Now I have introduced stress and uncertainty into a situation that already is stressful and uncertain.  Doubt has been cast on my local expert and I have to consider questioning his judgment.

Dr. Scott, by all accounts, is a very good doctor.  I can tell that he cares deeply about my case.  I already know that Dr. Harry Erba from UoM concurs with this treatment.  The Internet tells me that Harry Erba knows what he is talking about.  I'm good with that!  Are you?

As I've said before, it is the uncertainty that is the hardest part.  Once I have chosen a path, then it is just one day at a time; and there is some peace and calm with that.  I'm anxious to get on that path.

Healing monster!

Bless me father.  It has been 3 days since my last entry.  And I've been doing pretty much nothing except keeping up on a stiff medicine and food regimen, all poured in to my J-tube.

(SKIP THIS paragraph) That and draining a neck wound (I know, eeewww!).  I also developed a yeast infection (thrush) in my mouth.  It is a potential side effect of the antibiotic I'm taking which also kills the beneficial bacterial present in my mouth.  Hey, it is present in your mouth too!  Without this bacteria, a certain yeast can thrive and turn your tongue white, make it feel fuzzy, and also cause your salivation glands to kick into overdrive.

It is really the little things that make the big differences.  Little positives make you feel great and little negatives make you feel lousy.  The big stuff, say, having your esophagus removed or going on that Disneyland vacation are always what you think will be the big deal.  But I find I'm almost never thinking about the fact that my stomach is in my chest... an idea that was a total freakout a month ago.  Instead I am thinking about what a drag it is to have a cough or miss some sleep.  And on that Disneyland vacation it will probably be an unplanned event, something small that happens on the trip to or from the park that will be the favorite story you tell your friends. 

So for three days I've been grumbling about all the little daily irritations and feeling elated by terrific conversations and correspondences.  Meanwhile, my body is getting what it needs in spades!  My brother-in-law Bruce (bless him) took me to get a blood test yesterday that would be required for my appointment with Dr. McCahill today, for which I was chauffeured-to by my brother, Rob (bless him too).  This was a post-surgery meeting to assess healing from all that trauma from the esophagectomy.  That test result was delivered by Nurse Navigator Coralyn during Dr. McCahill's exam.  She was just beaming!  "Best post-op blood result ever!", she said as she high-fived me.  Dr. McCahill took a look and said "Wow!" And then he tried to explain how some esoteric numbers on the report spelled out that my body was healing way in front of the curve.  Essentially my body is responding full-on to the nutrition.  They actually paged the nutritionist who  appeared at the door shortly, also beaming.  I don't understand exactly what those numbers meant but it was clearly all good!!  Those little cans of brown liquid that represent my sustenance are doing exactly what they are supposed to do.  I sort of forgot about my cough.

The pathology report also had come back for the lymph node adjacent to the esophageal tumor and as suspected, it was the same as the esophageal tumor.  So officially I am (or was) stage 3 for esophagus cancer.  That stage 3 will probably be amended to include some letters that represent the fact that the cancerous masses have been cut out.

Tomorrow I'll meet with Dr. Scott to learn more about what he is thinking regarding chemotherapy.  On Monday I meet with a ENT specialist, Dr. Winkle, who will look into my vocal cord dysfunction.  It is a common side effect for this surgery and apparently treatable.

Still healing (evidently, very fast).  Still not talking.

Aaargh! Time to hook up to the food pump.

Swallowing and coughing

I like talking to friends.  That's what makes this stage of healing particularly difficult.  I feel reasonably well  in general but can get short of breath quickly.  Talking, for whatever the various reasons, brings on the cough.  Last night I tried Skype with Alice and the conversation reverted to her talking and me typing... sort of a hybrid, which worked quite well except that I am a slow typist.

So days are beginning to be filled with solitary activities, reading, writing and wrestling with the food pump.  I think I mentioned that 12 hours a day I need to have a latte-colored liquid pumping into my J-tube, named for it's direct connection to the jejunum.  This fluid is food without the fun.  It is supposed to be super duper healthy, physically rejuvenating, and it is vegetarian.  But this nutritional trickle has a physical similarity to anxiety.  It feels like butterflies in the stomach sometimes.  I think I am anxious when I am really just experiencing the symptoms of anxiety.  Ok, there may be some real anxiety thrown in there too;  I know you are thinking that.  But I am always more anxious with the machine on.

I am also sipping clear liquids.  It's not lasagna, but taste and swallow are not completely foreign concepts.  Excited to graduate to more complex foods soon.

Speaking of swallowing, I want to go back and tell of the "swallow study" I mentioned in an earlier post. I referred to it as "drinking a radioactive milkshake" to make sure there were no leaks at the new anatomy junction.

All trips to radiology start with a thrilling bed ride, usually chauffeured  by a dude with a soul patch who lives in Rockford.  The man corners that bed through corridors like he takes pride in his work! Once parked at the St.Mary's radiology department you may be offered a heated blanket while you wait.  I always wait in the same place and I recognize the same faces working at the desk but the room I go into looks completely different every time.  Clearly, there are multiple rooms, each with special gear but I am always surprised to discover a completely different environment.

This particular lab right away stood out as a place where fashion mattered.  I concluded that these people must have intentionally decided that they would be the hippest department in the hospital. The atmosphere and attitude was very groovy and each of 3, tall attractive assistants was wearing, brightly colored, lead-lined, mod "club-wear".   They could step out of the lab, pick up guitars and we'd all be thinking, "yeah!".  I commented on all the different colors (each outfit was one solid, color with black accent trim) and they seemed pleased that I noticed. I was told there were 7 colors in all, none the same.

They had me stand on a platform along with expensive-looking machinery with great curved arms pointing at and around me.  The beverage they handed to me was in a styrofoam cup and looked more like apple juice than milkshake.  I guess the "radioactive milkshake" idea was just hyperbole on my part (sorry).  I was told that it did not taste good by any stretch, in fact,  pretty much he opposite of good.  It was explained to me that a series of x-rays would scan from top to bottom and track the radioactive liquid as it slid down my throat.

Just then, a young man with perfect hair slid into a plexiglass DJ booth and told me he would be spinning the discs all night long for my dancing pleasure... or maybe it was something to the effect that he would be conducting the scan.  He advised me to take small sips.

Now I'm a gulper (or I used to be anyway) so small is relative.  Plus, for a week I'd been practicing forced non-swallowing.  A tiny damp sponge had been the only wet thing that passed my lips.  So out of the gate with my first swallow, using my new food delivery apparatus, I would be drinking something that tasted terrible in an amount that seemed to matter.  I was terrified!  When asked if I had any questions, I managed, "What if I throw up?".  He told me that that never happens.  That actually offered me some relief.

The DJ donned some fashion-forward frames and remarked, "I've got to protect the merchandise." On cue, I sipped a medium-small amount, swallowed and almost immediately spewed liquid down my hospital gown and began coughing.  This was a bad start! The good news is that I had a much better idea of how swallowing was going to work in this tiny new throat.  The next swallow scan seemed to please them.  The liquid went in one direction.  They had me turn sideways and do it again.  The beverage tasted like tar-flavored cough syrup but It would be the last sip.  Or would it?  They had me relax on the bed with hot blankets over me while they examined the results.

As it turned out the liquid seemed to flow nicely down the front of my gullet but they wanted to make sure about the back as well.  This time, back on the platform, the DJ pulled on a joystick and the whole platform and machine tilted back at an angle.  That last sip also seemed to work well,  I asked for a swish of water to get the taste out of my mouth.

While we waited for the Rockford soul-patch dude to arrive to bring me back to my room, I asked the woman in the magenta lead-lined dress if she could tell me my results.  No, she couldn't, but being cool, she read me the note on the outside of the folder: "Standard expectation".

"What do you think that means?", she queried in a knowing way.

So the swallow tube worked then and now it is broken.  Healing can be a bitch!

Readers, for me writing this tale has timed out nicely.  My food pump is beeping, which means it has dispensed all its nutrition.  I am untethered for another 12 hours!  I'm going to go sip some cran-grape and see if I'm regular.

Home, take 2

Doctors just released me again.  I'll be heading home this afternoon.  I've got to get the coughing under control so I have new meds and I'll be lying low.  Doctor's orders say "no talking" until the cough is gone so I'm turning off my cell phone.

They ascribe the cough to messing with the throat anatomy and the giant nerve that runs next to the vocal cords.  The breathing tube from the operation is known to wreak havoc on this same nerve.

Until further notice, home visitors should only be poets, mimes, troubadours, minstrels, artists, readers and other performers who have a short act and clearance from Mary to stop over.  Or they just want to hang out with Mary and Marlee.   Shouldn't be long and I'll be dragging out the karaoke machine!

Slight setback

After that heroic homecoming story, I now have to eat a little crow.  I'm back in the hospital.  Most of you will not want to read this entry so I'll jump to the end and say that I'm fine and still healing but I'll be in Lacks for a day or two before I can return home..  Send emails... no calls please.

I noticed that I was coughing more and more.  It seemed to be a little worse when I talked; as if the weird vibration of my whacked-out vocal chords tickled my cough reflex.  So I was practicing being still all yesterday morning, catching up on some correspondence, etc.

At 2:00, the home visit nursed stopped by to check in and see how I was doing.  I explained that I felt really great in all ways except that this cough seems to be getting worse.  It was very irritating.  I demonstrated the cough technique I was shown where you grab a pillow to your gut to use as a "splint" to ease the pressure on the lower incisions.  I coughed, reaching a little deeper to get that "progressive feeling" where stuff might actually come up.  As it turns out, I should have been splinting the neck wound.  No one had mentioned that before!  To quote my brother-in-law, Matt, who sent a would-be prophetic email an hour later, "The thought of you coughing with all that reconstruction gives me the heebie jeebies."  (Matt, you should stop reading here, for sure.)

As I coughed, I had a weird bulge sensation in my neck.  I told the home nurse "I've never felt that before!"  It didn't hurt at all but when I reached up to touch my neck, I noticed immediately that it was swollen.  I asked the nurse If I looked different.  She couldn't tell.  Just then, Mary walked in and took one look at me and said "What's wrong?"  She came over and felt my neck and confirmed that it was definitely swollen.  And while she was feeling around my neck, I realized that the left side of my neck was numb.  It was surely not a good thing!  But a weird side-effect of that numbness was that it took away the cough sensation.  My breathing was easier and besides the fact that I could not turn my head very far in any direction, I felt a little better.

We reached Dr. McCahill's office by phone right away and after a little consultation, I was advised to meet him at the emergency room.  The procedure did not take to long and used local anesthesia.  He opened a slit at the bottom of the neck incision and massaged gasses and fluids out through the hole he created. He discovered a suture from the original esophagectomy had developed a leak.

I'm still a little unclear about where all these fluids come from and what is exactly going on. But it seems the strategy is to let the gash drain for a while and eventually the ruptures will heal on their own without additional surgery.  I spent an uncomfortable night with medical sponges taped to my chest around the gash.  One of my favorite nurses came in periodically to change the sponges, which would be soaked through with stinky fluids.  I did not sleep much at all.  In the morning, an ostomy bag was adhered to the gash and now those fluids go into a baby-sized plastic bag instead of sponges against my skin.  I am much more comfortable.  I'll go back home this afternoon or tomorrow morning, depending on how long they want to observe me.

Still Life: Blogger with ostomy bag on neck

Stand by for a second triumphant, but more modest homecoming.

Home!

Didn't even need a jacket!

Introducing the new world (local) record for going home after a transhiatal esophagectomy (as conducted by Dr. Cahill, veteran of 100+ of these surgeries), a mere SIX NIGHTS in the Hospital.

I was greeted by a dogwood tree in full bloom and a beautiful row of tulips.  Mary has fixed up 2 "dens" for me to hang out in, day and night that can accommodate visitors and multimedia (books and DVDs).  The cats are very interested in my feeding tube.

A toast to all the awesome nurses and personnel at Lacks Cancer Center who go the extra mile to comfort patients, get people on their feet quickly and remind them to use those blue breathy-gadgets with the little ball.  Those suckers (the gadgets) WORK.  Actually no one had to remind me.  I thought of using them as doing lung push-ups and I credit that extra workout for my short recovery time.

Speaking of working, all of you who read my last post and prayed for my colon, you should know that your prayers were answered!  I also got my 17 staples pulled from the neck scar and I'm sad to say that it is much less scary.   The window of opportunity for you low-budged horror movie makers to use me as a walk-on extra has closed. (BTW: Do you think "scar" has anything to do with the origin of the word "scary"? Etymologists, please get back to me.)

One thing that is not working correctly is my voice.  We thought that removing the nose tube might fix that, but alas.  The nerve to my vocal cords got a bit stretched during the operation.  So, I sound funny.  It is supposed to gradually get better.  I sure hope so.  If you call me to chat, you will soon regret it.  I'll squeak out a few words and then I will start coughing.  The coughs sound funny, which is a plus, but they also kind of hurt.  I'll keep you up to date in this blog when it is safe to converse.

We had the in-home feeding pump demo already and the gadget aspect is pretty appealing to me.  Lot's of tubes, connectors, valves and buttons to press, complete with menus, lights and occasional dinging noises.  And the really cool thing is that I, personally am a key accessory in the circuit.  It won't work unless I am plugged in.  How awesome is that!  and the pièce de résistance is that I can see right now that some of the parts that will be left over when am am done with the pump have great secondary uses for video production.  (I'm thinking of you, Girbe.)

I am officially open for visitors. You will be astonished at how good a guy ravaged with two cancers and 2 operations can look!  Days especially can be long.  I only request that you call or email first and keep visits reasonably short.  My cue for you to leave is that I will fall asleep.  My cue for you to stay is that I will insist that you stay longer and after you say, "no, I really must go" then I will insist one more time; and then you can stay... until I fall asleep. I will never insist a third time so you can always escape after the first instance  Oh... a few more rules.  Look for a bottle of hand sanitizer in the room and clean off all your parts that you think I might want to touch. In 99.9% of cases I'm talking about your hands.  For my hand-less friends, I'm talking about your feet. Finally, (and I'll keep saying this) I don't expect anyone to visit.  If you are the visiting type, that is a bonus.  But I love my email/ Facebook/ Hallmark correspondents and my rarely-corresponders equally as much.

Being home is so sweet!

Things are progressing swiftly

When I was informed about this operation, I was told that the average hospital stay afterward was 11 days.  The shortest anyone stayed was 7 days.  Well, folks, we have a new record.  I'm getting sprung today after a mere 6 days.

I will now enter a home care phase. I'm still not healed by a long stretch, I just don't need a hospital to do things that can be done in the comfort of my own home.  Strike the nurses, cue the cats.

Look, ma!  No tubes!!

I have to get used to some big changes.

First of all my voice.  I thought it was mainly due to the nose tube but in fact my vocal chords got stretched or something so my voice sounds (and feels) weird. I still don't like to do a lot of talking because it can lead to painful coughing.  Alice called me last night and fed me Mafioso phrases to say so that she could hear how scary I could make them sound.

Secondly, my "stomach/esophagus"is very narrow.  Literally 3 sips of juice and I feel like I'm full to the brim and the brim is just behind my tonsils.  So brownish, semi-predigested nutrition is delivered by pump to my J-tube where it is delivered to the head of the digestion line, at the top of the small intestine.  I need to be hooked up to this pump 12 hours a day or I'll starve to death.  For the other 12 hours I need to try to increase intake of clear liquids for a while and then graduate to cloudy liquids (i.e. cream soups) and eventually chunkier stuff.  At some point they can do a procedure to stretch and widen the tissues and I can strap on a slice of pizza.

Thirdly, I've had major surgery so I just need time for wounds to heal.  Coughing is very painful to my gut and I cough a lot. No lifting or unassisted stair climbing.  Lots of medicine, all injected into my J-tube, adding to this bloated feeling (c'mon, colon, try to keep up!) And I have this gnarly neck scar that in the right light, would cause small children nightmares.  I may be available for small horror film roles on films without much in the way of special effects budgets.

Finally, all this healing only leads up to phase two: the chemotherapy phase. (Speaking of low budget horror films, there's a title for you.)  The pathology report for the tumor and infected lymph nodes is expected today.  The evil Dr. Scott is lurking just around the corner planning his next diabolical treatment aimed at , T-Cell lymphoblastic lymphoma as well as a side dish of poison set aside for residue of esophageal tumor cells.

Starting to understand how Sisyphus feels.

A New kind of tube

First off, that was the WORST. MILKSHAKE. EVER! But my next tube was a straw. And that was the best cran-grape juice I ever tasted.  I'll maybe save the description for later..  But that nose tube finally out of my body made me feel so good I spontaneously wept (right after spontaneous gargling and spitting the horrible taste out of my month. )  I'll just let a picture say the 1000 words this time.

That's Jenn.  Yesterday was her first day back at work as an RN after being on leave for having twins.  She's going to be a great mom.  She took such good care of me today, getting me everything I needed, including pulling out the nose tube.

My new esophagus-stomach hybrid may have no leaks, but it is a very thin tube due to stretching and swelling.  Pencil thin right now. It's all about tiny sips.  Like tiny steps.

Post-op world

I think I have finally scraped together enough tube-free fingers and relatively drug-free brain to take another stab at this.

It was truly a blessing to have surgery sprung on me as a last-minute agenda item.  No time to worry about things.  Now I can get on with whatever comes next.  Short term goals are pooping and getting my nose tube removed.  Did I just write "pooping"?  It is a really big deal here and people fling it around the hospital (the term, not the poop) with a joy that is much greater than mere discussion of passing gas (though that is a big deal too).  I apologize to you, dear readers, for just putting the term out there like that.  We don't usually talk about our poop in the real world. I won't mention it again even though I really knocked a certain goal out of the park this afternoon at about 1:22 while humming the Star Spangled Banner.

The nose tube is my number one enemy.  They used to merely insert them (to promote drainage below the cut parts) but now they actually suture them to your nose because so many people just pulled the tubes out themselves because they are so uncomfortable.  I can't tell you how many times in a day that some one accidentally snags your nose tube on the corner of a piece of furniture or the edge of your stylish gown or anything else with 3 dimensions.   Sure, pulling on that nose suture really hurts but the tube itself also makes it hard to talk, gives you a sore throat, hinders the gross globs that you are try to eject from your windpipe and often just gives off a burning sensation.  The tube also does lots of good things too but I don't care to learn what they are.  With a bit of luck and a successful "swallowing study", the nose tube comes out tomorrow.  So my main goal for Tuesday is to have a successful swallowing study and a bit of luck.  Then I can start living!

So if you are like me, you are wondering, "What is a swallowing study?" I asked this very question to Dr. McCahill. It's pretty simple.  I'm not sure why it qualifies for a moniker like "study". An esophagectomy involves cutting out the middle bad part (which is your entire esophagus and a bit of your stomach) and sewing... excuse me, I mean suturing ...the two good end parts together.  That seam is not supposed to leak.  If it does, it could lead to infection or other complications.  So a swallowing study involves drinking a radioactive milkshake and then taking an x-ray to confirm whether or not you have radioactive milkshake spilling into your guts (bad) or merely sliding gently down the gastric-intestinal system (good).  Come to think of it, any test that involves x-rays and radioactivity probably automatically should be called a "study".

So until I pass this "study" nothing goes down the throat. I can dab my tongue with a cold, wet sponge but no swallowing.  I have a liquid ham sandwich of some sort going straight into my small intestine via J-tube.  Even when I salivate at the thought of food, I have to spit it out into a convenient omelet-shaped tray.  This can/will change tomorrow.  Then I can supplement J-tube with a liquid diet and gradually, over weeks, work up to a real ham sandwich.  Crap, I'm drooling again!

I also want to mention time and relativity again.  It is incredible how slowly time passes.  Typically, I would think of this as a good thing.  We all want more time.  But when your goal is healing, you lie there and watch the minute-hand creep its way around the clock face and you wonder whether you can ask for more pain meds... usually the answer to that seems to always be "not yet".  So you try to sleep and you wake up and 40 minutes has passed.  Seriously?  It is still today?  It has been today forever!  For everyone else on regular time, I'm healing quickly.  But for me, I have to learn how to pass a given minute of a day.  Shall I take a walk, which usually leads to a labored cough and if I am lucky, it is a cough that lets me breath easier?  That walk also leads to soreness and exhaustion so maybe I'll just close my eyes for a while instead. Gradually I'm learning that all effort leads to positive outcomes.  Active healing beats passive healing.  If I can do something good for myself, the rewards outweigh the costs. This is a slow boat I'm on.

The other thing I feel compelled to mention are the visions (Hallucinations? Mini-dreams?)  I know that some of my pain meds are narcotics but I also wonder about the brain's natural imaging system.  Certainly that is one ingredient in the mix and I'm not always sure that it is drugs that are bringing pictures to my closed eyes. Most often I see faces; sometimes gruesome, disfigured faces.  Always faces in nature-paintings and carpet patterns.  Often it is like a movie and I'm viewing the next shot. Someone in the room says something and I close my eyes and see them walk across the room but when I open my eyes again, they are still sitting in the same place.  I hear a name, I see that person smiling at me.  Today my sister Betsy left the room to take a phone call and I noticed the reflection of an Asian couple watching a futuristic video monitor that wasn't there.  Weird stuff.  The weirdest came last night.  I had asked for a sleeping pill to help get me through the long night and so they crushed up an Ambien and gave it to me through my feeding tube. My pleasantly weird visions turned disturbingly weird and ultimately, paranoid. I tried to turn it off by turning on the TV but I couldn't find the remote control.  So of course I did the next worst thing and dream-dialed Alice in California.  I knew she would still be up.  (Hell, she'd still be up if she was on the East Coast!) I just needed to hear her familiar voice and tell me that it was all OK.  She did and it was.  I'm quite sure my nose tube-impaired, paranoid, dream voice from thousands of miles away probably freaked her out.  She did not let on.   Just what I needed.

A quick shout-out to all of my family members who are able who have held vigil over this semi-crazy, healing person.  They think there needs to be a sane person in the corner of my room at all times.  They may be right.  It has to be incredibly boring and yet they keep showing up!  My family and friend support has been outstanding!  Also special thanks to all my friends who recognize I need space to be crazy in.  Remember, it is going to be boring for me for a long time and I appreciate those who can send a cheery, supportive message now and save a visit for a time when I can talk too.

Time to drain my drool tray.  I hope no one has read this far.

short post

The deed is done.  It took nine hours. Man is my throat sore.  Healing.

The party is cancelled

What party?

Well, I never even got to the part where I sent out the invitations.  It was supposed to be an "Eat, Drink & Be Merry for Tomorrow I Won't Have an Esophagus" party.  I thought it would be a fun way to bid adieu to a bit of extraneous anatomy.

At the meeting this morning with Dr. McCahill (surgical oncologist) he told me that he had created a special spot for me tomorrow in his surgical schedule.  You see, Dr. Scott, the chemotherapy guy, is just itching to get started on treating the lymphoma because of its super aggressive, lethal nature.  The trouble is that the chemo treatment for that will inhibit my body's ability to heal itself; it is designed to kill fast growing cells.  So it is important to take care of the also-aggressive esophageal tumor first so that I can heal up from surgery before the lymphoma slaughter begins.

Dr, McCahill, the party-wrecker, gave me the lowdown on what to expect from an esophagectomy.  Evidently the esophagus, this seemingly-important player in the gastrointestinal system is not all that critical.  Kind of like your appendix.  It is merely a tube and it functions like a dumbwaiter, delivering food from the kitchen, down to the dining room.  This surgery just relocates the dining room "upstairs", right next to the kitchen.  So post-surgical Chuck will have his stomach in his chest, sharing an efficiency ribcage apartment with his heart and lungs.  It'll be a bit noisy and crowded but the food will get there quicker.

 Earlier I had mentioned that there were 2 ways to accomplish this surgery.  Dr. Shabahang prefers the trans-thoracic approach and he made it sound pretty damned good.  You can see more of the terrain and pick out the bad stuff easier.  Dr. McCahill prefers the laparoscopic trans-hiatal approach. There are a couple of blind spots but the the healing is much faster and the  possible side effects are less risky.  The bottom line is that Dr. Scott wants me back in the saddle quicker and the trans-hiatal approach can be scheduled right away and the healing will go faster.  That, plus the fact that 70% of these surgeries are being done with this newer method and it has become more accepted as the standard, preferred treatment.

So, I have been squeezed on to tomorrow afternoon's schedule at St. Mary's for this 6-8 hour surgery and I'll be shacking up on the 4th floor of Lacks Cancer Center for a couple weeks following.  The average is 11 days and the record is 7 days.  I'd think about trying to smash that record except the people at Lacks are so nice and they give me everything I need at the press of a button; very science fiction.

So at some point, the party will be rescheduled under a new name: the "Who Needs a Damned Esophagus Anyway?" party.  See you there!

Ummm... what to say

Several years ago, my friend Paul Winter (not the more famous one) called me and told me that his doctor had discovered a melanoma in his hairline.  He was a kitchen remodeler and we had always talked about one day fixing up my kitchen together.  I would pay for materials and his time and I’d also be his assistant.  Paul pointed out that soon he would be going through some serious chemotherapy and it would be good to do this project while he still had some strength.  I was so grateful that we had those three or four days together.  We enjoyed philosophical discussions, ate good food and I ultimately ended up with a much-improved kitchen.  I remember that he talked about being grateful for cancer because it opened him up to the beauty and precious nature of daily living. At the end of the project, I brought a fruit basket to his house, hung out with him and his family for a while and offered the requisite, “Let me know if there is anything I can do”.  And I meant it.

Time slipped by and I thought of Paul often.  I considered calling him but deep inside I feared the possibility of hearing bad news and so I gave myself the excuse, “no news is good news”.  But in this particular case, “no news” turned out to be bad news. More than a year went by and I was shocked to one day read his obituary in the newspaper.  How could this be?  How did I let so much time pass by without checking in even once?  How is it that I didn’t know he was dying? The grief hit me hard and the shame hit me harder.

I think that now I understand that Paul was never sitting around in pain wondering, “I wonder if Chuck will call me today?”  If he had needed me, he truly would have called.  I know he would have greatly enjoyed a visit from me but I’m also sure his remaining life was rich with profound moments, in spite of the fact that I was not there to share them.  No, it was not about him needing me, it was more about whether I needed him.  All of his moments were precious and mine, by comparison, were mundane.  It was I who missed out on an opportunity to really experience the incredible company of an excellent a human being during a transformative time of life.

Unlike Paul, I will survive this period of ill health.  That is the plan anyway and the odds continue to swing in my favor.  I only bring up this story of Paul Winter because I recognize the awkwardness of reaching out to someone who you know has been diagnosed with a life-threatening disease.  You don’t call or write or visit because you have no idea what you will say and you are afraid to broach the inevitable subject.  God forbid you get lost in small talk!

Being on this end of the awkward conversation, I now understand and I think I can offer a service to all of you who are just like I was.  Some tips:

1.     It is really OK if you don’t write or call or visit.  Really!  I won’t think any less of you.  I’ve got plenty of things to do and not one of those things is worrying about who has or hasn’t contacted me. I know that you care!  If I truly do need to hear from you, I am capable of reaching out.

2.     It’s perfectly OK to acknowledge the elephant in the room.  In fact, start there.  It gets much easier after that.  Get it out of the way and then we can talk about regular stuff.

3.     If you do want to reach out to me, little is good.  I don’t need a grand gesture, a long visit, an epic phone call, or an explanation of why it took you so long.  Whether it is a little note or an email or a card, small connections are all super welcome.  Knowing that people are thinking of me is a bonus that makes me feel good.  More isn’t necessarily better.  In fact, a long phone call or visit may be more exhausting than it is helpful.  Look for cues that it may be time to say goodbye until next time.

4.     Say, “If there is anything I can do, let me know.”  It is an expected thing to say, and if you are my friend, I’ll know it is genuine.  There is a 95% chance that I will not need anything from you but it makes us both feel good.  No need to apologize about it being a trite cliché. We need something to say in these situations and that one works pretty well.

5.     It’s meaningful to know that you are praying for me.   But skip the sermonizing. I’m agnostic so your prayers work just as well whether you are Christian, a Muslim, a Buddhist a Hindu or a fellow-agnostic just sending good vibes my way.  (Atheists, if you can't manage faking "good vibes", send soup.) I don’t believe that there is an omnipotent being deciding on my fate depending on how many faithful are pleading my case.  But I do have a sense that spiritual energy is a good thing in any form.  And if things do go our way, it strengthens our connection to the spirit and that helps us all be better people.  So keep the prayers coming!

I’m really glad that I had the opportunity to know Paul Winter.  I am incredibly grateful that I had those few special days with him, working on my kitchen.  I do wish I had had a few more hours to spend with him.  But now I know that between us, I am the only one with regrets about not hanging with him towards the end.  He cared about me as a friend but he very likely never, not once, felt miffed that I didn’t call.  He had much more important ways to spend his time. 

The devil inside

Now I have some visualization to focus my healing energies. I had an ultrasound endoscopy this afternoon to look at the esophagus and get an idea about the size and depth of the tumor. I slept through the procedure but Dr. Morrow was nice enough to show me a postcard (right). Looking at the pictures on the left, the hole is the entrance to my stomach, the dark red is acid reflux burns and the globby thing is the tumor.

He also used ultrasound to penetrate depth but there are no pictures of that. His opinion was that the tumor was "T2 N1" which I think means it is contained in the wall of the esophagus and has not yet busted through the other side.  Shorthand explanation here. So there is still hope that it is stage 2 and not stage 3.

As a visual person, this is very valuable to me. I like being able to have something tangible in which to focus my internal death rays. If any readers out there also have death rays that work over great distances, you now know what the devil looks like. Send 'em my way.

Reality bites

I received a reminder this evening that these cells growing inside me are more than theoretical. I've been feeling near normal so it has been very easy to just enjoy life experiences without feeling like a sick person.

Abby dropped in and we decided to go out for dinner at Charlie's, a place we really like but for some reason rarely think of going. They had great specials, we ran into friends, the waitress was terrific and the food that came to our table looked amazing. It was a great start.

Since my only symptom has been food occasionally getting stuck at the juncture of my esophagus and stomach, I've learned to chew carefully and eat slowly. Even with those precautions, food occasionally still gets stuck and I need to sip a bunch of water and swallow repeatedly to make it go down. To an observer, it looks a little like when your cat is preparing to throw up. If you have a cat, you know what I am talking about. Not exactly a pleasant thing to witness but it is over in a few seconds. My family has gotten used to it. You may want to stop reading here.

As I was saying, the food looked (and tasted) great. This may have contributed to a lapse back to my old bad habit of wolfing my food. And something got stuck. I reached for my water and started swallowing over and over but for the first time, it would not go down. I sipped more water but it still wouldn't go down. This means that the water came back up. I started sputtering as the water gurgled at the entry to my windpipe. I had to push Mary to the side and run for the door to eject what I could in the parking lot. When I sat back down, the food was still stuck but a couple more sips and it successfully pushed through. It kind of put a damper on things as you might imagine.

I debated whether I should mention this in my blog but decided that the blog is for me and this was a profound experience. For guest readers, I will continue to remind you when to stop reading. Let this be a lesson to you!

Inching forward

Yesterday I began acting on the hospital discharge instructions that I received last Friday night; setting up next-step appointments, mainly. I had been told that I would need a post-op appointment with the surgeon next week Thursday where we finish "staging" and chart the course for attacking these diseases. I called the number for the scheduling person and left my name at the recording and then waited. I finished my book (The Hunger Games) and started another (The Psychopath Test).

Finally the phone rang. Whomever told me "this week Thursday" was confused because as we all know it is spring break this week. She went on to tell me that all the appointment slots the following week were already full and she'd have to bump me to April 17. I told her I was kind of confused by that since it it kind of felt like when I was talking to the doctors that they wanted to get started quicker than that. I have two, aggressive, un-staged cancers in my gut and a bunch of staples and sutures in my back. I have to wait a half a month?

I emailed Coralyn, my kind and efficient care coordinating RN and left her a short list of questions and concerns. She emailed me back and said she'd call with answers before 3:00.

What I am learning about hospitals and specialty doctors is that they are geared very well for moving people through the system after they know what they are treating and who is the expert on that treatment. I keep throwing them curve balls and they keep shuffling me back and forth to the correct specialist. Nobody, including me, seems to know who is in charge of my care. They started me in the unit who is staffed with people who are experts in esophageal cancer. Now that they know that the lymphoma is also a primary cancer, I'm learning that esophagus people don't know much about lymphoma. And surgeons don't know anything about nuclear medicine and radiation oncologists know nothing about chemotherapy and my internist really has no idea about the surgery choices. Cancer is complicated! Or should I say cancers are complicated? That is the real issue. It is not one disease. Cancer is lots of diseases and they all act and are treated differently.

Throw in spring break scheduling to the mix and you have what seems like a bit of chaos.

Coralyn called me back a little after 3:00. Everything is cool. I'm getting my stitches taken out today. I'm getting an endoscopic ultrasound on Friday (I'll be sleeping while they inspect the esophagus tumor with ultrasound to see if they can get a better idea what stage it is). She's setting up a meeting with my Internal Medicine Oncologist for next week. The surgeon will see me on the 17th as scheduled. That extra healing time is a good thing. I'm in good hands.

Now I'm thinking about squeezing in a little work.

Relativity

It has been really fascinating for me to observe time in a a relative sense ever since the c-word entered my sphere. For me it is also a peak into the way my brain works.

My first experience was that time slowed waaayyyy down. This happens when I get a new piece of information that is unexplained and requires that I wait for a phone call or a test result. Something about wanting an answer right now but knowing you must wait causes your mind to wander up and down through spectrum of possibilities. It is hard to pause on any one thought because of the weight of the infinite unknown pushing you to the next thought. This unrelenting arpeggio wears you down quickly.

During these times I find myself looking for distraction; something that I can latch on to for a while and give my freewheeling mind a rest. I find that my tolerance for leisurely moments is diminished greatly. For example, I went canoeing with some friends and little decisions like "shall we put in at this river bend or that river bend?" drove me nuts! Just get into the water already!! Later, we pulled up the canoes at a beautiful little vista and decided to just sit and let the river flow by for a while. I noticed the irritation setting in and I kept thinking, "C'mon, let's keep going!". Sleep also is very difficult. I get so tired that I fall asleep but wake up in an hour and find myself back in the panic loop. I need to find something to keep me engaged until I can fall asleep again from exhaustion.

The flip side of that "waiting on the unknown" comes after finding out a piece of definitive information. It can be good news or bad news. Depending on which kind it is, I feel either elated or deeply sad for a short time. Following that, I go through a phase of feeling intensely creative. I'm now on a path. I know what the next steps are and as I go through these steps, I observe the world around me and apply everything to my current filter. Nothing seems hard. Everything is interesting. I can't stop generating ideas where anyone of them is a launch point to become lost in thought. I wave goodbye as great ideas are left behind me on the path, never to be thought of again. My Facebook retorts are funny. I'll talk someone's ear off. I want to start writing and I don't want to be interrupted. I'll forget about pain. It's a good place to be and the feeling may last until the next fork in the road.

As I ponder these two very distinct, recognizable states of being (which I can only do in the latter state), I think about how these are merely amplified states of my everyday, pre-cancer condition of just being Chuck, working on a video project. I'll take on a project knowing it will start in the distracted camp and end up in the highly creative camp. I know there is a story in there somewhere and probably an excellent way to tell that story. I start by walking a familiar, less-creative path. I put some dates in a calendar, talk to the client about who the best people are to tell the story, figure out what the visual resources are, and then just try and get the train moving towards a date when I know I must begin editing. Video files will be logged and transcribed and categorized. Maybe I'll trip over some good visual metaphors I can use on the way or record an especially poignant interview. I always know there must become a point when I understand the story and how to tell it.

Almost always there is a period of crisis. I don't know what the story is. I seek desperately for any kind of distraction. When will this day end? I better check Facebook. Eat something. Go to the bathroom. Think of someone I could call or email. Start thinking about a freebie project with a distant deadline. Find a reason to knock off early. Explore an obscure key-command for a function of my software I'll probably never use. Anything other than face my "lack of a roadmap" and that my story could go wildly in any direction at all.

And then a deadline hits. My calendar says editing must be begun no later then this date. I'll force myself to take one step down a path by choosing a shot (or a piece of music, or an effect template) and putting it on a (literal) timeline. Suddenly a second shot makes sense. I'm editing and I can begin to see farther down the road. I see structure. I think of several alternatives. Time is flying. I'm in creative mode and I'm happy. At the end of a block of time I have something in front of me that I feel pretty proud of, even if it is just a sketch of an idea that informs me that the rest of the project is just walking briskly down this path and refining and refining up to the final deadline. (I always try to make that final deadline 1 week before the actual final deadline to account for the inevitable equipment failure or client change.)

Cooking is the same way. I know my family has to eat something delicious and nutritious for dinner every day. Some days I have a vision of what it is going to be far in advance. On a lost day I might just pick up a pizza. But on most days, I have no idea what it is going to be. I have faith it will be good. I look in my refrigerator and I lose a little faith. I look in the pantry cupboards and I lose a little more. But then I see a bag of pasta in the back and realize that all I need is olive oil and a little garlic, an egg, some frozen peas and I'll have something to work with. Then get out of my way! In less time then you would think, I'll have a multi-course, delicious meal made out of nothing that satisfies both my vegetarians and my omnivores. I can do that every time. All it takes is knowing that it is time to make dinner right now.

As you can see, I am the kind of person who functions well on deadline pressure. Which brings me back to cancer.

People keep telling me I'm so positive and brave in the face of this horrible disease. And I really do feel great! I'm not just putting on a brave face. I hardly ever think of pain or needing help or sympathy. I'm thriving!

Why?

It's the deadline pressure!! Cancer has potentially moved up the deadline for having a good, full life. Sure, there are moments where I lose the path but for the rest of the time, I'm in a zone!

How am I going to spend my time?

Traveling a clear path when I see one and processing my ideas as they come to me. Hoping that next fork in the road, when suddenly I won't know what to do any more is a long way off.

And when it comes I will feel tortured, eventually choose a fork, and then I'll be good again for a while.