Power port- Engage!

My arm IV days are now over.  Well... not entirely, I'm told.  My new power port has been installed just below my right collarbone.  Both IV infusions and blood draws may now be taken from a little metal port with a silicone entry point offering no guessing or "vein chasing".  The port leads to a large vein that leads directly to my heart.  The catch is that only certified RNs are allowed to use them.  The place where I have my dilation procedure done has already informed me that they are not certified to use ports.  So arm pokes will still be necessary on some procedures.

Dad and I practice weird expressions

It turned out to be a long day.  My last meal was supposed to be before 7:00am (egg custard) and I was told to arrive at 12:30.  My dad was in town so I asked him to be my procedure companion/driver.  His sister (my Aunt Nancy) asked to join us so she could cheer me on and hang out with her big brother for a while.  It turned out to be a longish visit because the "Interventional Radiology Unit" had had an emergency that morning that had set the whole schedule behind.  Nancy prompted dad for navy stories, many of which I had never heard before.

At about 3:30 they finally wheeled me down to their CT scan-assisted operating room.  I'd met the doctor before.  He was the same one who did my first (inconclusive) liver biopsy.  A part of me wanted to chat about that with him but a larger part of me just wanted to let it go.  They would not have discovered the lymphoma except for that inconclusive result.  I'm sure he is a fine doctor.

The nurses and the radiologist proceeded to tape and tuck and drape in order to expose my jugular and collarbone in just the right way. They slathered it up nicely with prep solutions.  After sending some saline and an antibiotics through the IV, they administered the Versed.  It is supposed to make you sleepy and relaxed.  The dose they gave me did relax me but I was awake for the whole thing.  At least that is my impression. There are two incision points so there were two "bee stings" of numbing solutions.  I couldn't see anything (nor did I want to) but I felt a lot of pushing and and could follow what was happening through the O.R. comments. Pretty soon they were closing and there was a clear point when the doctor was finished and leaving the room.  The nurses stuck around to clean up and un-tuck me and explain about the tissue "glue" that would rub off in about 5 days.

Back in the room, they needed to monitor me for about an hour before I could go home.  I was feeling pretty hungry and they offered me a few options and I opted for yogurt and pudding.  They also had sandwiches but I'm still a bit gun-shy when it comes to bread, despite the fact that I had a dilation just the day before.  My dad was called back into the room and we hung out for an hour and received post-op instructions.

Back at home by about 5:30, I was disappointed that the pool temp had gone up only 4 degrees over the day.  I guess the hazy atmosphere affected the efficiency of the solar heater.

Mary and I had a lovely visit and terrific conversation with her nephew Graham and his girlfriend Nicole who were in town visiting from New York. At one point I turned my head to the left and got my first hint that the anesthetic was wearing off.  From that point on I became aware about which kinds of movements, including coughing, would aggravate the incisions.

It is now the next morning and I'm still a bit sore.  I'll take it easy today.  Tomorrow is Mary's birthday and Monday I'll get to try out this new port as the Cancer Center once again inflicts their worst chemicals on me.

Dawn, go away! I'm no good for you.

 First a little theme music.  I'll wait while you cue it up.

I have mixed feelings about finally getting my power port installed.  It will be fantastic to get rid of arm IVs for good.  But I'll sort of miss my regular encounters with Dawn, the Phlebotomist at the Lacks Center.  She gets major points for being a little bit kooky; something I like from anyone who sticks needles into me.  But her very best qualities are that she's fast and nearly painless.  And I can judge because I've had sooooo many pokes this year.  Aside from a few clinkers, most of the nurses and phlebotomists are very good at what they do.  But Dawn is the best.  She's in and out before you can say, "can you find a good vein?"  When Dawn say's, "Here comes the little poke."  She means the little poke.  I am in awe of her mad skills.  I'll truly miss her sweetness, light touch and goofy commentary.

Dawn, the super awesome Phlebotomist at Lacks Cancer Center

So the alternative to having an arm IV is the power port.  It's a little capsule implanted just below the collar bone, under the skin, that allows anyone drawing blood or dumping chemistry to have direct access to the circulatory system.  All the cool kids in the chemotherapy lounge have them.  And on Friday, I'll have one too.  It will go nicely with my new iPad.

Herring

You can never predict.  Some foods sound really good but once you put them in your mouth there is a great disappointment.  Watermelon was good so cantaloupe must be OK too, right?  Well, not so much.

Mary bought me a small package of Dutch licorice (for those unfamiliar with Dutch style, it is salty).  It is true that I like Dutch licorice and even appreciate the "dubbel zout" (double salt) variety, which many find repulsive, immediately spitting it out especially if they think they are eating candy.  But this particular package had the word "Herring" at the top and this gave me some pause.  I checked the ingredients to see if the salt might originate from little salty fish.  It appeared to be a vegetarian recipe.  Regardless, I set the package aside thinking with all my nausea and coughing and disagreeable foods and food textures, Dutch licorice was bound to clash with something.  Just the word "herring" set my stomach on edge.  Nice try, Mary.

But last night my old friend Herm stopped by for a visit and a glass of Founders Centenial IPA. (I'm drinking water by the way.) It was Herm's dad, a Dutch immigrant, who originally turned me on to Dutch licorice.  As young teenagers and descendents of Hollanders, we took some pride in the appreciation of this acquired taste.  We would even make an occasional foray into the Dutch store to sample Dutch licorice in its various forms.  Right next to the cases of Dutch chocolate, we chose licorice.

So I decided to tear into the package of "herring" in honor of Herm's visit and immediately discovered that the licorice was in the SHAPE of herring.  Duh!  My second discovery was that this Dutch licorice came alive in my mouth.  It was stroking all the right taste buds.  And the chewy texture somehow provided a perfect mouthfeel.  And then it felt good going down.

Herm and I both polished of several herring and then went our separate ways.

And now I am chasing these nasty "Xeloda" chemo horse pills that I have to take twice a day with Dutch licorice.  It gives me some incentive to make the swallow.

Wicked witch or no wicked witch

I've been thinking about the Cowardly Lion lately.  Of Dorothy's three Oz companions, Lion's lack of courage seemed to stand out far more than Scarecrows alleged stupidity or Tin Man's inability to love.  He seemed the most pathetic and least useful of the characters on the journey.  And yet, I can't think about courage or bravery without Lion coming to mind.  So deep is is the symbolic imprint from the repeated experience of watching that movie every year on television growing up. My affection for the whole Wizard of Oz ensemble remains intact.  Even for the lion whose opportunity for bravery seemed thrust upon him more than chosen.

That beloved movie and its climactic "reveal" about the power of mere symbols to transform and understand what is already within you certainly had an impact on me and perhaps on my generation.   (Does a generation unexposed to this film in repeated, ritualized screenings have the same understanding of the power of symbols?)

Bravery and courage have resurfaced as major themes for me lately.  And like the lion, theses do not feel like qualities that I possess.  Fear is something I understand. Courage is something that I attribute to those who do great things.  Is the act of temporarily setting aside fear so that you are not incapacitated the same thing as bravery?

We've all read the stories in the newspaper or heard them on TV news about the bystander who rushed into the burning building to save the child.  We love pointing to heroes and sometimes we find it a little too easy to stretch opportunistic happenstance into bona fide heroism.  Often the person at the center of the act of "bravery" will say things like, "Anyone in my position would have done the same thing."  Very often I find myself agreeing with statements like that.  I'm happy that that person was there at the right time and I am emotionally moved by the result but I definitely understand that there is something in most of us that will lead us to do the right thing when confronted by an intense situation.  Cowardly Lion proved that.

Painting by Reb Roberts

During my first hospitalization, my friend Girbe visited one evening bringing with him a painting by Reb Roberts.  Anyone familiar with the Grand Rapids arts scene, or even anyone who frequents downtown or East Hills or Eastown knows Reb's public work.  He's been pretty consistent for a long time.  I've been acquainted Reb long enough to remember his wife/companion Carol who died of cancer many years ago.

The painting of a cat creature with the word "Courage" at the top was a particularly meaningful gift, especially after I heard the story that came with it.  Girbe had run in to Reb (they are old friends) and had told him my story. The next day, Reb dropped off the painting to Girbe, telling him, "I want Chuck to have this."  I was very moved.

It is an overt statement, a symbol not unlike the medal pinned on the lion.  It is an external reminder about the real internal medicine that will be required to get through this.

This merman proudly hangs from my food-pump pole

Other friends have come through with symbols as well.  Alice's friend (and mine), Michelle, sent me a Christmas ornament along with a very personal, handwritten letter describing her mother's battle with breast cancer.  She recognized the cancer struggle as a journey and she also recognized the value of having an icon to mark that journey.  For Michelle it had been a flowered purse that she hung on a doorknob in her room.  It was wintertime and that visual reminder of a springtime, when it would be more appropriate to go out with that purse, was just the milestone symbol she needed to focus farther into the journey and to a better time.

For my journey, Michelle thought that having a very flamboyant and healthy-looking "merman" ornament hanging on my tree in December would be an excellent way to look back and remember the sometimes perilous journey of the past year.  I tend to agree!


Friends, Thom and Suzanne, set me up with a lucky acorn icon (love the way that one rolls off the tongue!) along with treats and a particularly memorable seasonal experience.  Sim Roos has been reading to me in a grand, expressive voice. And countless friends are dropping off food, flowers, books or movies, or chasing off squirrels in the walls, driving me to appointments and all providing excellent company.

So I can recognize the journey and I know my fellow travelers. It's really a reluctant hero's journey.  I think it is a fine line between a hero and a victim sometimes.  I don't feel brave at all.  When I'm accused of having courage I find the notion quite confusing.  I'm just the guy who says, "Anyone in my position would have done the same thing." and I rescued not a single child from any burning building.  My bravery comes from facing potential death from a bunch of mutating Chuck Peterson cells inside my esophagus.  I can't really run away from that.  Is that courage?  I call it dealing with the situation in front of me one day at a time.  What else can I do?

We'll all face mortality sooner or later.  For my friends and family I think I represent the notion that it could be sooner.  A sobering thought.  And if it makes you value each day that you are drawing breath a little bit more, I am happy to be that living symbol.

Cowardly Lion: All right, I'll go in there for Dorothy. Wicked Witch or no Wicked Witch, guards or no guards, I'll tear them apart. I may not come out alive, but I'm going in there. There's only one thing I want you fellows to do.
Tin Woodsman, Scarecrow: What's that?
Cowardly Lion: Talk me out of it! 

Nausea = gnaws at ya

Seems my irrational fear of chemotherapy is becoming more rational.  If you read last Tuesday's post, you might have come away with the idea I survived the first day pretty splendidly and you would have been correct; the first few days, really.  The nurses at the infusion center liked to talk about the very good anti-nausea drugs they were giving you by IV, as if to say, "You are so lucky that chemo patients no longer have to worry about nausea." But at the same time, I've been hearing stories of loss of appetite and nausea so I had some clue that it was not yet perfect science.  The guy infusing in the lounge chair next to me looked on jealously as I mentioned I had a J-tube as a back up for nutrition.   The same guy also advised that I stay away from my favorite tastes when nausea set in because I would develop an "association".  True that.  All I have to do is think of the color of the delicious tropical juice blend I was getting in 3-liter bottles at Costco and I gag.

The nurses also warn you to push extra liquids because they don't want the chemicals hanging out in your kidneys.  I roll this over and over in my head as I watch the ice cubes melt in my full glass of water.

The nausea struck Thursday morning, the same morning as my next scheduled endoscopic dilation procedure.  That's the one where they put me under with versed  and stretch the opening in my throat so I can swallow textured foods again.  It was my fourth dilation but the first where I had the extra burden of gag sensitivity going in.

That morning I dutifully took my home-version of the ant-nausea drugs and waited for a relief that never came.  My friend David Hast showed up to take me to my appointment,  bringing along a homemade strawberry-rhubarb custard pie his wife Diane had baked for me for afterwards.  I had assured him I would be starving after the procedure and the dilation would afford me full swallows.

Dr. Farr, who had also performed the second dilation procedure a few weeks back, met me bedside before the procedure and  seemed concerned that I was needing them so frequently.  He then mentioned that he could probably teach me to do them myself. Excuse me, could you repeat that?

He went on to explain that it was possible to learn to tame your gag reflex and swallow a spacer device attached to a hose and stretch out your throat any time you felt like you needed it.  It could be learned.  Sword-swallowers do it.  But I couldn't quite get my mind around this idea.  Also, the timing of the suggestion was bad since I was so uvula-conscious this particular morning.

The procedure went fine, I guess, but I have no particular desire to swallow anything so perhaps it is wasted.  I seem to tolerate cottage cheese and applesauce, a tablespoon of each being the "meal" I put in my stomach before swallowing the oral chemotherapy drug I take twice daily for 14 days.  I am indeed grateful for the tube feedings each night that bypass the nausea effects.  I'm giving myself extra water through the J-tube every time I think of it as well.

Stephen avoiding the bumps in the road

On Friday I went in to the infusion center for a second dose of the IV chemicals.  Once again I was given the "good" anti nausea drugs through the IV and by lunch time I actually felt hungry.  My  chemotherapy escort buddy, Stephen, had thought to bring along a cooler full of food and drink options and I was grateful to recognize that nausea would not be a permanent condition.

Nurse Jana adjusted my home nausea medications by adding Ativan to the mix.  It is an anti-anxiety drug but it is supposed to compliment the Odansetron.  So now I am nauseous and sleepy.  I'm told they'll have other options to try but first I have to get through this weekend.

No infusions this week.  Just the twice a day pill.  On Tuesday I'll meet with Nurse Yolanda to look at blood test results and hopefully try something else for the nausea.

Sorry this post is so complainy.  Hope you didn't read it.

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!

The treatment

Well, first the good news... that awful inpatient chemotherapy regimen is kicked to the curb.  Also, no more surgery.  The bad news is that the reason they are dumping the radical chemo is that they are no longer trying to "cure" me.  From here on out they will only "treat" me.  The difference being that the goal of treatment is to slow the cancer growth and give me the best quality life possible in the time remaining.  I don't know how much time that is and neither do they.  It all depends on how I respond to the much milder chemo.

So that starts next week and involves intravenous treatment on Mondays and Fridays and swallowing capsules on the other days.  I'll do that for 2 weeks and then have a week off and then they start over.  Side effects include orange pee, tingly fingers, susceptibility to infection, possible affected hearing (high frequency loss) and nausea.  I get to keep my hair; and I'm the one guy who doesn't care about that!

Dr. Scott chose a particular treatment that mainly is geared for the esophageal cancer (proper name: metastatic adenocarcinoma) but also has some known effect on lymphoma.  This is the closest he can come to the two birds with one stone approach.  He explained how surgery on the liver is pointless because it is fairly major and would set my health back in the wrong direction.  The metastatic part of the metastatic adenocarcinoma means that the adenocarcinoma cancer cells are floating around my body like little spaceships.  Sure, they have set up a tiny colony in my liver but wiping that out also wipes out a good chunk of the healthy portions.  The chemicals are designed to kill the spaceships and the colony... or at least slow them down.

We still have lots of questions. Nobody really has both of these cancers at once.  And so we don't have an estimate of how much longer I've got based on averages.  Really I'm not ready for that kind of information yet, anyway.  But we now have a diagnosis and a treatment plan.  There is no known scientific cure so at some point we'll probably be looking at all the auxiliary treatments like special diets and miracle elixirs and laying on of hands.  Maybe science will come up with something new or perhaps I'll just plain confound the doctors and get better despite all expectations.

This news is not unexpected so we are not devastated today any more than we have been since all this began.  There was plenty of levity in the exam room as Alice and I watched Mary try to transcribe all the ridiculous, polysyllabic, chemical names and their effects as Dr. Scott rattled them off.

Afterwards, the three of us (Mary, Alice, and I) went to Yesterdog to see if a Cheddardog-plus-pickles-washed-down-with root-beer treatment would have any effect.  It remains to be seen.

Not the news we were hoping for

Since I've already posted today, I'll keep this one short.  I got the call from Dr. McCahill.  Dr. Scott was on the road to an oncology conference in Chicago and he asked Dr. McCahill to relay the news that the pathology report from the liver biopsy came in this morning and the test showed positive for the esophageal cancer cells.  This brings me up to stage 4 for esophageal cancer.  Not what anyone wanted to hear.

This likely means they will shelve the treatment for lymphoma for the time being and concentrate on a chemotherapy approach to the esophageal cancer.  Radiation will not be an option since the liver is involved.  I'll know more when Dr. Scott returns.  We meet on June 7 to discuss next steps.

On the dole

I received a call yesterday from the US Social Security Disability office informing me that my application for receiving SSD had been accepted.   I guess that is good news because I have been worried about my decreased ability to make an income right now and potentially for the next two years or more.  It will be nice to have a check coming in but I find that I have very mixed feelings.

Partly, it is the stigma of being "on the dole".  As a life-long middle class person I have been trained to pull my own weight and this "free ride" feels kind of strange.  I know that the whole point of Social Security is that if you pay in you can also withdraw at some point in your life.  I just never thought it would be at not-quite -52-years old. The man from SSD who called was very nice and not the slightest bit skeptical or shaming (which is what I would have expected).  He was happy to introduce my benefits.  He wanted to explore whether there could also be some benefits for Marlee since she was under 18. (Probably not for various reasons.)

The other dismaying part of it is just the reality check that I am a bona fide, official disabled person.  Really?  Now I feel bad for sending in my application!  I've seen disabled people and they are blind or in wheelchairs... much worse off than me.  I can see perfectly and walk around on my own two feet!  Although I truly feel unable to serve my clients and make an income right now, it's mostly because of my chronic, intermittent hospitalization and imposed bed-rest due to the latest invasive procedure.  I'm having a hard time accepting... visualizing myself as a disabled person.  And that reveals the darkest aspect of being accepted into the Social Security Disability club:

It usually takes months.  I received word after submitting my application only a month ago.  I think this means I was fast-tracked as an "end-of-life" candidate.  My particular cancers put me in this category, I suppose.  I plan to survive them but SSD has seen the numbers and talked to my doctors and they want to make sure I can enjoy the benefits I've paid into my whole working life while I can.  Receiving monthly checks seems like a disincentive to get better and I'm not sure I like that!

MOVING ON

Today is another procedure; another IV, another anesthesia, another throat dilation. I just had one of those last week, my second such procedure.  You see, I'm supposed to eat as much as I can into my tiny stomach but the anastamosis site from the esophagectomy keeps tightening up, after a while making it difficult to take in anything but liquids and very soft foods.  The diameter of the opening to my stomach before last week's dilation, I'm told, was the size of a pencil.  Dr. Farr stretched it back to normal size using a series of spacers but I can tell it is getting smaller again.  Coughing gets worse and anything with texture goes down hard.  Today, Dr. Lown will give it a try.  Dr. Lown was the doc who did the original endoscopy that discovered the tumor.

I have a personal theory that it is the coughing that makes it worse.  Since I am off ibuprofen, the inflammation is unchecked and causes more coughing.  More coughing causes more inflammation.  I have no science to back this up.  But I know my big swallows are short lived.

COOL NEWS

Yesterday I taught Abby to drive a stick shift.  I made her recite the mantra, "In one hour I will know how to drive with a manual transmission."  It worked.   So now she can drive my car to her new job at Family Video on Fuller Avenue while she looks for a car of her own.  She's looking for something in the $2000-$4000 range if you know of anything; particularly a vehicle that gets good gas mileage.

And tomorrow, Alice arrives from Los Angeles for a 10-day Michigan visit.  I thought I would be in the hospital by then but it looks like we will be hanging out on the town instead.  I like the idea of that much better!

AND

Still no biopsy results.  My next scheduled appointment with Dr. Scott to discuss next steps is on June 7.  Until then, eat (small servings) drink (non alcoholic, healthful beverages) and be merry (no restrictions there).