Chemo world

What a day! So full of stories. This is a very long post.  I should have written this post yesterday as I was busting with euphoria... or perhaps it was just metabolism kicked into overdrive due to toxic chemicals.  Anyway I felt energized, very creative and with a better appetite than I've had in a while. The night was capped by a slice chocolate pie, delivered by Teresa Thome from her mom's famous recipe.  The crust was out of this world!  This morning I feel hung over and I don't think it is the pie.  More likely it is the impressive list of symptoms barking back at me from the 3 cancer-killing chemicals I'm taking, held at bay only by my immune system and some good anti-nausea drugs.

The morning began with a call from Bob Russell.  Bob is a long time friend/acquaintance who I met at GRTV years ago when we conducted our first conference on the Internet and its "new" development, the World Wide Web.  Bob introduced us to Mosaic.  I had some more recent correspondence with Bob as he was diagnosed with stage 4 esophageal cancer a little over a year ago.  He lives in Traverse City (operating a beautiful bed & breakfast on Mission Point, no less).  He's a very smart guy, an amazing researcher and is about a year ahead of me on the same cancer path.  Bob was in Grand Rapids having just flown in from a conference in New York.  He agreed to meet me at Lacks Cancer Center for a brief debrief at my 9:30a.m. initial chemo appointment.

Chatting with Bob

Alice was my companion for the day and our car converged with Bob's car at the Lacks parking lot at the same time.  Man, did he look great!  He did not look run down at all.  He was healthy and robust in every respect.  This was a huge lift for me!  We walked together to the clinic and for once it was good fortune to be stuck in a waiting room for 45 minutes.  Alice took notes as Bob revealed all of his wisdom on the subject; from supplemental therapies to optimal state of mind to new scientific developments to working with doctors to getting in on research trials to living life.  He knew all about the drugs I will be taking and had very specific suggestions on how best to deal with them.  The dude is living proof! At about 10:15, I was called in to have some blood drawn and Bob and I said our goodbyes.

After giving up bodily fluids, it was time to take on the new fluids.  Well.... not exactly right away.  First was a tour of the infusion area.  Initially, "Beth" showed us sort of a break room with vending machines, a refrigerator (if you want to bring meals from home) and a couple of computers hooked up to the Internet.  Then we were taken to this "lounge", peppered with enormous recliners.  Most of them were already occupied by people with IVs and their companions siting close by on normal chairs.  Lots of old people.  Most reading or sleeping.  There were private rooms too, I was told, but for my first day, they wanted to 'keep an eye on me".  I was asked to pick a chair.

Alice is saying, "Why don't you react to your environment a little for this shot?"

All the window seats were taken so I decided to select a chair based on the people I would have to look at sitting across from me.  I found some reasonably healthy looking people at the far end of the room and sunk into the recliner.  Later I would discover that people come and go all the time so the view changes.  Later we would also discover that the chair at the end is also right next to a wastebasket that everyone seems to use as they walk by. I'll have to pay attention to that next time.

I was told that my nurse would be "Yolanda" and she would always be my nurse there for sake of continuity.  Alice and I opened our laptops, found an Internet connection, and settled in to wait for Yolanda. An hour passed (we learned that the bloodwork has to go to the lab and be processed before chemo can begin).  I kept looking at the nurses and trying to read their name tags as they walked by... but no Yolanda.  Finally, from a back room I saw a nurse B-lining in my direction.  Close on her heels was a dreaded sight: a job shadower!

Nurse Yolanda looked like the real thing.  She was reeking with the look of wise, no-nonsense experience.  Her protege, on the other hand, had more the look of someone who needed to please her supervisor.

While Yolanda explained the days expectations, I watched the job shadower go into a cabinet and fish out an octopus of bags and tubes.  I knew it would be her duty to poke me.  As she approached, I asked her name.  Nurse Jackie was a transfer from another hospital and she assured me that she'd set up tons of IVs.

I like the nurses who take the time to find a perfect vein.  They tap your arm and say things like, "Now there's a good one... I can use that but maybe I can find an even better vein!".  Then they make a little prick and inject some anesthetic so the tube insertion will be less uncomfortable.  Nurse Jackie was not that kind of nurse.  She wiped on the topical and jabbed.  It stung more than usual and kept stinging.  She taped it tight, making sure to include the maximum amount of arm hair.

The first infusion was an hour and a half's worth of saline with some other minerals.  So Alice and I had some time to proceed with our secondary objective.  Taxes.  Both of us had deferred this year.  I had TurboTax on my laptop and she had a folder full of receipts.  This year she was filing a complicated Schedule C that included a move from New York to Los Angeles.  A perfect distraction from thinking about needles and poison chemicals and an opportunity for some practical dad/daughter time.  I think we were the only ones in the room doing taxes.  Being the new kids on the block, I suppose we made a certain kind of impression there.

Occasionally we struck up a nice conversation with the man sitting next to us.  He was stage 4 Pancreatic cancer and had a great attitude and a good sense of humor, provided protocol tips, and most importantly, he knew when to stop chatting.  His son stopped in to visit and he and Alice recognized each other as having gone to the same high school (a couple years apart).  He had been friends with the brother of one of Alice's best friends.

Another "small world" meeting happened when a man strolled in to an empty chair across from me and I immediately recognized him as my long-time former next door neighbor (back on Grove Street).  Jim probably tops my list of the people I most prefer not bumping into ever.  When I lived on Grove Street, I always cautiously peeped out the door before exiting to make sure he was not in proximity.  He loved talking my ear off about how the neighborhood was going downhill, about how all kids were vandals, about how water rolling off my roof was getting into his basement, the fact that he had a gun and was not afraid to use it, and he usually threw in something about having seen a "colored person" in some place where he or she was not supposed to be.

Jim did not let me down on this occasion either. After informing me that the person I sold my house to used to have loud parties on the front porch until 4:00am each night, he told me I was lucky that I moved out when I did because the woman who bought the house after the party guy defaulted on his loan experienced having her car shot up by a "colored guy" with an AK-47.  He said the police never showed up to investigate but he had picked up 8 shells.  Nurse Jackie saved me when my pump beeper went off but not before hearing one last story from Jim about how he spent all day yesterday working on the catalpa tree stump on the border of our properties. My grandfather had cut down that giant, dying catalpa tree over 35 years ago, before I bought the house.  Apparently "the City" finally got wind of the 5-foot diameter stump and was making him remove it.  It's plain that my ancestors and I continue to torment him in the most passive aggressive way! I successfully avoided catching Jim's paranoid eye after that.

Amy, my nutritionist, popped in to see how things were going.  She is the best (and fastest) communicator on my team so it is always a pleasure to chat with her about all my eating issues.  During our conversation, I kept wincing, as the IV that was dispensing Cisplatin into my arm was starting to zing me.  She called the nurses over who started fiddling with it, which made me think about needles instead of the nice conversation I was having with Amy regarding implementing Bob's supplements suggestions from earlier in the day.  I felt the familiar blood pressure drop that I use to get every time I had blood drawn and so I had to lean back and ask for a cool, wet wash cloth for my forehead.  They eventually worked it out and Alice kept good notes from Amy.

Alena, my Lacks-appointed counselor, also stopped over to see how things were going. She had an interesting comment about my coughing.  Another patient who had had coughing issues was told that the best way to relieve a cough is to stop coughing.  Sounds weird but it make sense to me.  Coughing begets coughing.  I must try to resist the urge to make the tickle go away by letting loose a big cough.  I'm trying that tactic now.

The last toxic chemical they administered is called Epirubicin.  It is dark red and must be administered manually by a "push" (of a syringe).  This is the one that makes your pee turn orange (or pale red as I later discovered).  It also makes you lose you hair in a couple weeks.  I know that earlier I said that I would not be losing my hair but Yolanda tells me differently.  I know... can you imagine a bald Chuck?

So Jackie pushed Epirubicin and Yolanda gave me instructions about the next few weeks.  I will only get one more infusion day this Friday and next week Tuesday they will draw more blood and evaluate how this is working so far.  I will take a third chemical, Xeloda, in pill form at home for the next 14 days.  If all is working well, I'll get back on this chemo cycle starting on July 2 and continuing through a good chunk of summer.  So, Mondays and Fridays taking infusions, 14 days of pills and then a week off.  I will feel progressively sicker and in a couple weeks I will need to be extra careful visiting with people who may be sick.  Strict hand sanitizer regimen.

After a short saline flush Nurse Jackie pulled out my IV (along with most of my arm hair) while Alice and I clicked "send" on the federal eFile button.

I had some nice surprises when I got home.  Abby rolled up with her new, used car, a 2004 Kia Rio station wagon that she managed to pick out successfully without me.  I am so proud of her handling this major coming-of-age benchmark.  Alice then got the phone call she was hoping for.  She just got hired on to Steven Soderberg's new film, a Liberace biopic starring Michael Douglas and Matt Damon.  She'll be working in the production office.  Work starts the day after she gets back to LA.

And then I received a package in the mail from Jeffrey Brown.  It was a graphic novel called, "Funny Misshapen Body: a Memoir".  If you know graphic novels, you know Jeffrey Brown.  He is an established comic artist that lives in Chicago.  Last week I received a different Jeffrey Brown graphic novel called "Clumsy" from Alice's boyfriend, Zack.  He was up from Ann Arbor visiting Alice and he had heard I liked graphic novels.  Zack explained, "Jeffrey Brown is my favorite and he's from Grand Rapids".

As soon as he said that, I said, "I think I know Jeffrey Brown".  Jeff Brown was my intern at GRTV back in the mid 90's.  I did not know anything about his life after GRTV but I was quite sure that the introverted kid who was always writing in sketchbooks, making animated spots for other producers using Deluxe Paint IV on the Amiga computer, and had a brief, awkward call-in talk show with his friend Nate, was quite capable of being a successful graphic novelist.

Personal inscription

I googled him and confirmed my suspicions.  I found his address and sent him an email telling him that I remembered him and was excited to hear that he had a cool art career.  He replied with a nice post script telling me that his GRTV experience was a foundation for his art career.  A very sweet thing to say!

So this book arrives and you can see the inscription (pic).  A bookmark on page 118 revealed a reference to his GRTV show.  So very cool and uplifting!

Teresa Thome, Fred Stella and Patrick Ziegler stopped by with the aforementioned pie and we visited while dangling our legs in the 82 degree, solar heated pool.  Our friend Carolyn also dropped in with an amazing pot of homemade chicken rice soup.

I cooked up a quite amazing batch of enchiladas for dinner and fell asleep to an episode of the older HBO series, "Rome".  It was a very long and memorable day.

By the way, my "the crust is out of this world" comment in the first paragraph is an inside joke.  The crust was fine but it was just a store-bought crust.  The real story was the filling.  This is not your standard "dump chocolate pudding into a pie crust" pie.  The taste was more like the very best chocolate fudge homemade ice cream topping I remember from my grandmother.  I don't know how grandma got it so good but I think it involved lots of butter, cream, and just the right amount of sugar so the dominant flavor is amazing chocolate and not overwhelming sweet.  This pie took me back there. I can see why Teresa asked for this specialty from her mom every year on her birthday.  --Teresa, I didn't miss your under-the-breath comment about it being a "store-bought crust" but I thought it would be funny if you thought I did.  It was a real treat!