In cognito

When I look in the mirror I know I look different.  For me it is the lack of eyelashes and my formerly bushy eyebrows looking pale and thin.  The eyes are the window to the soul and I guess that the framing makes a difference.  I notice the differences in my body less because I don't tend to look at my body when looking in the mirror.  But I know I am much skinnier that the Chuck who used to not worry so much about eating a bit more than required to sustain his energy needs.  But if you haven't seen me in a while, I'm guessing that the missing 40 pounds is noticeable.  And then there is my signature haircut that I've sported since the 80's.  The "polished" look is significantly different despite the fact that I've been described as a bald guy since my 20s.  With the glasses on, most say I look about 10 years younger.

 Last night we went to see a sold out speaking engagement featuring John Waters at the Grand Rapids Civic Theater.  Mary had acquired a pair of free tickets from a friend and we had made all the arrangements to participate in a rare evening event.  For me this means strapping on the food pump early so I can later go out unencumbered by the annoying appliance.

So maybe I should have not been surprised as acquaintances passed by me at a crowded public event, one after another without a flash of recognition.  Some, I nodded to and those who nodded back appeared to be reciprocating with politeness rather than connection.  Not a single person approached me or spoke to me (without introduction).  It's not that I am a super popular, hip, well-known guy but I do know a fair amount of people in this community and it was strange to feel like I was in disguise as people I knew fairly well slipped by right in front of me.

I've kept my cancer story off Facebook for the most part.   There is a link to my blog there if you search for it but so far I have preferred to make my social network presence low-profile and free from my health issues.  There are many people in the "acquaintance world" who would have no idea.

There is another reasonable possibility for invisibility and that is the social avoidance of discomfort.  Perhaps I was noticed and a conscious effort was made to pretend I was unrecognized while in the vicinity. What do you say to an acquaintance you haven't seen in 6 months who clearly looks a lot different; hairlessness and weight hinting at the possibility of cancer?  Who wants to have that conversation at a fun event?  I get that.  I have pretended to not notice people when I have wanted to avoid an inevitable and unwanted subject.  In fact, I find myself feeling empathetic with those people and I would avoid eye contact with some who I do not want to put in the uncomfortable situation of asking me about how I am doing.

The show was very engaging and funny.  Waters is so incredibly charming and comfortable in his own, weird skin.  His material is definitely not for everybody.  Despite being unabashedly vulgar, there is sweetness in his acceptance of everyone and humor in his flipping of popular convention upside down.

We were home by 9:00pm and even squeezed in a little ArtPrize and dropped off my car for some work at the Auto Doctor.  On a physical level it was a success.  I was tired but not overly so.  I strapped the food pump back on when we got back home and we plugged back into our more typical evening routine.  I did fall asleep before the Daily Show, however.

I think my hair is threatening to grow back.  The downy softness of the back of my head is beginning to feel a bit prickly.  Many friends are advising me to keep the look.  It is definitely easier to maintain than crappy hair.  Hope the eyelashes come back soon.

Fish bowl

I'm finally off needing anti-nausea meds for this "final" chemo break and am grateful for that.  Another week and a half of getting back to "normal" and then starting on October 1, one last week of infusions and pills and then I get an extended break to see see if this successful treatment holds for a reasonable amount of time.  This last cycle is "for good measure" but I find myself fantasizing that Dr. Scott will call and say, "You can be done now."  A week doesn't sound like much, and it is not, but those last few days in a cycle can really bring you down.  I don't feel like doing anything other than finding a comfortable position to sit and try to distract myself from not feeling sick.

I understand that I really need to step up my physical activity.  There will be no normal until I can get out in the community and resume participating in life rather than observing it through Facebook, radio, or television.  My muscle mass has taken a huge hit and I need to get strong again.

ArtPrize has arrived in Grand Rapids and I have always enjoyed walking around and seeing what people have come up with.  I just read an article which mentioned that the voting aspect of ArtPrize has become less important to most people (There are more dollars given away than there are total votes for all entries) and I am definitely in that non-voting crowd.  The "winners" are usually a disappointment since they seem to be rewarded by their mass appeal and sometimes their marketing and pandering.  For me, it is less about who wins and more about seeing imagination on display. It is a circus and a circus is fun.  Who needs a winner?

My fall clients have begun to call me about doing work again.  I am torn.  It sort of forces me to look at the unknown future and make a decision on how best to spend my time.  I truly enjoy being a productive, creative, contributing individual and if I'm not working, I'm just an observer.  And yet I don't know if I'm looking at months, years or decades in front of me.  Actually no one knows how much time they are looking at.  I often miss the state of being unconcerned about mortality.  Should I travel instead?  Volunteer?  Try to finish some old, long-term unfinished personal projects?  I have never been a good capitalist so why should my concern be about making an income?

The acclaimed TV series, "Breaking Bad" has been recommended by many people as a a high-quality, dramatic series that is also available on Netflix instant streaming.  Not to mention the fact that it deals with the subject of cancer and making and income why you still can.  My daughter Alice got hooked and had been encouraging me to check it out.  I finally decided to commence with a "Breaking Bad" marathon during this last week of feeling like doing nothing and can concur that it is very engaging material, artfully shot, and presented by good actors.  I am already into Season 4.  I must admit that I find the cancer and legacy subplots to be pretty relatable and a nice dramatic compliment to the over-the-top (and unrelatable) cliffhanger, drug world stuff that makes the show so thrilling.  The main character (Walter White) ultimately decides that financial stability for his family is his most important legacy (at the expense of everything else) and it is fun (and scary) to see him pursue this to a point of no return.

So today I am going drug-free, TV-free and am putting aside feeling sorry for myself.  I'm going to catch up on some paperwork, talk to some clients and get out on the sidewalk and get just a little taste of Artprize.  Time to climb out of the fishbowl!

Light at the end of the tunnel

Yesterday I started the "last" two rounds of chemotherapy, which will last 5-weeks, after which I will have a hiatus from medicine and doctors appointments.  After that I'll be tested periodically for return of cancer activity. The nausea will go away and the hair will grow back but I'll remain skinny and bald... a bullet head if I want to continue shaving.  I'm told that although no cancer showed up as active on the PET scan, this is not necessarily considered remission.  Rather it is called a "complete response".  The scans can detect the liver tumor like a cottage in the woods.  The lights are all turned off so the cancer cells may be dead or sleeping.  But the cottage is still there.  The margins are more highly defined as a result of the chemo.  I'm told surgery and radiation are not options but I'm still not sure why.  I'd like to burn that cottage to the ground!

The Non-Hodgkins Lymphoma is still a mystery.  It has not presented itself again since that original infected lymph node that was removed.  The chemo appears to be working with that one as well.

I'm getting shots of Neulasta.  This stuff increases the white blood cell production in my bone marrow to help fight off infections that may come as a result of high chemo doses.  Blood numbers all look good and in the normal range.

My other issue of concern has been weight.  I started all this weighing in at 210 which I hovered around for about a decade.  I'm 6 feet tall and I was thinking I would really rather weigh about 190 all that time but between surgery and chemotherapy, my weight has dropped down to 170 (which looks good on me) and I'm thinking that is an excellent target weight for me.  My feet don't hurt nearly as much. But during the last round it dipped to 165 and Dr. Scott and my nutritionist, Amy, are on my case to get it back up to 170.  With the extra week of chemo vacation I added an extra can to the nightly pump feed and concentrated on my daytime regular food intake, hungry or not and managed to weigh in at 169.5 for the beginning of chemo.

Speaking of hunger, I've been managing my appetite by revisiting Marinol, which is THC synthesized from marijuana in pill form.  At first I thought it was only making me groggy but Amy encouraged me to stay on for 3 weeks before I would really feel the clinical benefits.  She was right.  During the "break" it was the only drug I was taking and I was hungry at all the right times and sleepy at bedtime.  I functioned fairly well despite the occasional "high" side effect.  It seemed when I needed to function I could. But if I stopped to stare at something I could lose my train of thought and go into a zone.  I'd also asked Dr. Scott to sign my Michigan Medical Marijuana card authorization but he refused.  He said there is too much capacity for using straight marijuana in an illegal way, buying for friends, etc. and besides, the smoking aspect adds carcinogens to the body that no one needs.  He's sold on the prescription Marinol.  Really, I was more interested in exploring the medical marijuana phenomena than smoking it.  I'm fascinated by the new culture and the very strange rules for obtaining it and understanding the challenges of the "caregivers" who grow and process it. I wanted to right an article about the subject.  It's not hard to find a physician to sign the form for you for a fee but I think I will comply with doctor's orders for the time being.  Marijuana is cheaper than Marinol but with insurance copay, the opposite is true.

More concerning to me is stomach capacity.  I can maintain a weight of 170 with the addition of 4 cans of "Pivot 1.5" pumped into me each night but what happens when they pull that feeding tube?  I suppose that when I am off chemo, my weight will be less important and I can drop down to the minimum recommended weight for a 6-foot tall person; something like 140.  My tiny, tube-shaped stomach does not afford me a satisfying meal; at least not now.

My excellent take-away lesson from my recent 3 weeks off chemotherapy is that the new normal does indeed change when you get off chemo.  It took to the end of the three weeks before I really started feeling good and "not sick" and interested in eating.  It was enough of a positive observation to get me through the next 5 weeks of ingesting chemicals designed to kill my cells.  After one day, I already feel myself descending into that grumpier, shakier, lazier, weaker, sicker self but I can put 5 weeks on a calendar and get through it.  I'll be getting disability payments by that time so maybe I can budget in a little travel.  I'll certainly be looking to volunteer and find new learning activities so I can continue to grow as an active person with value to society.  That is the light at the end of the tunnel.

Excellent outcome

I just returned from my appointment with Dr. Scott following up on my recent PET scan.  My pre-appointment procedures were less than stellar.  I really missed Dawn when they first needed to take some blood.  Dawn was on lunch break and her sub could not manage to get blood from my right arm and each poke adjustment stung pretty good.  The left arm proved better (though it stung too) and I was a pathetic sight with bandage-covered cotton balls on each arm.  And then at the weigh-in we discovered I'd dropped another 5 pounds.  Mary predicted this and my current belt size backed it up.

Dr. Scott had all good news.  The PET scan revealed no cancer activity whatsoever.  The liver tumor had not grown and also did not light up at all on the scan.  Nothing abnormal lit up in my chest either.  The chemotherapy was clearly doing what it was supposed to and Dr.Scott said that considering the doses, I was handling it very well too.  Beyond the nausea, none of the more serious side effects had manifested.

He decided to give me an additional week off chemo to try and build up some weight and then I will start again on September 10 with two more rounds (5 weeks) but at a lower dosage of the nasty infused chemicals. 

I wish I felt like I could eat more food!  It seems progressive in that I feel like eating less as the day wears on.  I'm going to up my overnight liquid food pump diet to 4 cans and try harder to eat more lunch and dinner.  Solid foods are still difficult so I'll be concentrating on cream soups, fruit and my new favorite beverage, V8.  I need to work on my exercise regimen as well.  I need to get on my bike more often while the season still permits it.

Nausea reprieve

My early morning PET Scan on Friday was the exciting culmination of a week defined by sitting in a chair wishing food tasted better.  A hospital lab visit was getting out of the house after all and feeling like some forward momentum.  Abby agreed to sacrifice her last Friday "sleeping-in" opportunity before the GVSU semester to drive me to St. Mary's at 6:45a.m.  Normally I would not need a driver for a PET scan but they had me taking some Benedryl to counteract allergies to the dye that they use.  There is also an hour and a half of absorbing a radioactive isotope through an I.V. that would give us some father/daughter bonding time and a chance to watch a DVD together.

There was a minor SNAFU at check-in as I was indeed on the schedule but there appeared not to be an authorization code available from the insurance company.  Probably nothing, but I had to first agree to be responsible for the whole cost if for some reason Priority Health didn't want to pay.  This is the third such "Auth code" issue that has come up lately.  It was seeming for a while like my insurance experience was going to be all good but now I'm feeling a little passive aggression coming from them.  I recently got the bill for my whole esophagectomy surgery and resulting hospital stay (5 figures) saying that coverage was denied due to lack of a prior authorization code from my doctor.  Since it is supposed to be 100% covered, I'm choosing not to worry about that one.  And then I got a bill for $720 for a denied injection I received during the surgery to fix my paralyzed vocal cord.  Apparently my doctor has a choice of 3 or 4 cellulose stiffening agents he could have used and he picked one (the one he said that he always uses) that Priority Health says is not on their list.  It is going to take appeals and red tape and I may end up just paying for that one.  It seems strange to me that I can go into an approved operation with an approved doctor at an approved hospital and then someone scrutinizes the bill afterward to see what they can avoid paying.  Isn't the point of an HMO that this stuff is worked out ahead of time?

Abby and I watched "Easy A" (a movie with a smart script that is better than it looks judging from previews) and ordered breakfast from the menu for after the scan.  All went well and I had no allergic reaction this time, thanks to the pre-meds.  So next week, Dr. Scott will have a nice 3D picture from "eye-to thigh" of my body in its current state of cancer metastases. That appointment is on Friday and we hope to see no hot spots lit up on the scan.  The only known spot is currently on my liver and possibly some lymphoma residuals in my mediastinum region.

I'm bracing myself for the reality that whether the cancer has grown or shrunk, it probably means more chemotherapy.  My nurses keep mentioning that I am carrying a heavy load in the nausea side-effect category of the drugs I'm on.  True, that.  I was grateful to be taken off the Xeloda earlier in the week and it has taken until this morning to feel like the nausea phase has cleared my system.  I woke up with an appetite and enjoyed a pretty good-sized smoothie for breakfast and when Chicago friends Dan and Mary and their son Josh dropped in late morning, I discovered I was ready for some lunch and I finally got to enjoy that baba ganoush I had made earlier in the week along with a fresh cucumber that the neighbors delivered from their garden.  I even had some bagel with cream cheese.  Food has not tasted this good in a long while!

The new physical effect I am experiencing is body weakness.  Maybe it is an iron deficiency or perhaps too much sedentary behavior.  But I now have to stand up more carefully to avoid become lightheaded and I feel like my muscles don't have the strength to do much more than fundamental tasks.  I feel pretty good sitting in a chair but moving around is now something that I pay attention to.  With the passing of the nausea also comes the passing of the grumpy, anti-social stage so I am happy to be feeling like interacting with people again.

I'm also looking forward to the esophageal dilation I will be getting on Tuesday.  I've lost count of how many I've had (7 or 8?) but they always leave me with a larger swallow capacity. It has been 6 weeks since my last one.  That, coupled with the extended chemo vacation and a presumed end to the chronic "thrush" outbreak may mean some expanded food experiences; something I crave more than anything else.

Finding ground again

I saw a bald eagle the other day. It was very much a surprise.  I've been waking up very early lately and upon mentioning this to my friend Stephen, he offered to scoop me up on one of his fly-fishing jags some morning.  I've been trying to say "yes" to more suggestions of getting out of the house and into nature.  Sitting in a comfortable chair in foggy morning light alongside a quiet river held some appeal for me.  I was barely settled in my favorite butterfly bag chair along the upper Rogue River when the giant raptor wings entered my peripheral vision; dipping under the river tree line, 30 feet away and exposing the striking black and white shapes that only define one kind of bird.  My camera was at my side, zipped up tightly in the carrying bag.  There would be no second pass.  The experience was only meant for the awake individual, not the documentary producer.

I've been struggling to write another blog entry for a few days now.  I wake up early thinking I know what I want to talk about.  I end up just starring at my screen.  I feel lousy.  I suppose it is the cumulative nature of chemotherapy treatments and it is definitely compounded by an annoying mouth condition, which won't go away, and makes eating a constant disappointment.  I can feel my energy levels dropping and I realize that this energy is the thing that makes me feel like a robust living person, no matter what the discomforts are.  I can't help going to a place where I imagine that this sapping of energy is what dying feels like.  Is my body shutting down? Why does my chest fell so tight? Inklings of fear and paranoia creep into my psyche.  I look in a mirror and find I still look pretty damned good.  Definitely not dying.  Still, just getting out of a chair feels like an effort and conserving breath seems like a good idea.  The flirtation with depression has begun.

Yesterday morning I sat out on the deck reading in a very comfortable chair with a breeze and perfect temperatures.  As lunchtime approached, my neighbors seemed to have launched into a robust pool party.  There were multiple barking dogs and children with much splashing and shouting.  In between the commotion I could hear and smell the preparation of hotdogs.  Hotdogs sounded so good to me!  Fixed just the way you want them, maybe with just a stripe of mustard this time or perhaps sweetened up with some pickle relish.  My culinary life has strayed so far from the possibility of a simple hot dog.  My kids are vegetarians, my wife a celiac and me, a gastronomical gimp with no stomach capacity to speak of.  I imagined eating a whole hotdog and then felt some anger at the impossibility of the fantasy.  In the refrigerator I had a ready-to-bake, homemade gluten-free veggie lasagna and a fresh batch of baba ganousch made from an eggplant out of my other neighbor's garden -superior foods, no doubt- but a junky frankfurter squirting out of a processed white bun never sounded better.

I don't like this new normal at all.  And yet finding peace there is key.  Just give me a little more energy and a little more stomach capacity and I can get there!  In the mean time I'm going to be a little grumpy and anti-social and it will take some time to get me pried out of this chair.

The good news is that Dr. Scott took me off the Xeloda on Monday, a week early, to help my mouth and nausea recover.   I hope my appetite and energy will soon follow.  Today I'm on a 24-hour no-carb diet in preparation for Friday's PET Scan.  The idea is that you give your body no carb reserves so that when they inject you with glucose during the scan, your hungriest cells, the cancer cells, all go "nom, nom, nom" and light up a radioactive isotope in a 3D picture.  Then you have a map of where all the cancer is living in your body.  This will help determine the effectiveness of the chemo I'm on.  In a week I'll have it interpreted and we'll know some things.

One last thing I wanted to mention.  I bought myself a watch.  I've always been sort of a "watch" guy.  It is a gadget that pins you down to a moment.  Being in the moment is an important reminder and having a Wenger Swiss watch, leather strap, quartz movement, water resistant and accurate to the second with a face large enough that I can read the date on it, makes me just a little bit happy.

It's 9:27a.m. and 10 seconds on August 23 and I'm off to try and swallow some plain Greek yogurt.

Animal stories

Not much new to report so I'll regale you with a couple of animal stories.

Last week we had that one really rainy day.  There was a giant cloud mass that was rotating counterclockwise with its center right on Grand Rapids for a change.  Umbrellas were dug out from way in the back of closets.  All the brown lawns were quite happy but havoc was wreaked on the roadways.  A trip to the grocery store was re-routed because of giant flooded areas across broad stretches of major streets. 

I went upstairs in the mid-afternoon to try and grab a nap, due to another early, early wake-up time.  (I had spent a couple hours lounging on the 3-season porch starting about 4:00 am.  The sounds of the rain had been lovely atmosphere for reading. ) So I settled into my bed, which is up on the second floor of our house. Out of the corner of my eye I saw some movement on the tiny, brick-width ledge outside the window.  It was a grey squirrel, lounging and grooming for a nap out of the rain.  He was facing out into the weather with his back against the window.  (I was close enough to ascertain it was a "he".) I watched him up close for a while and got to thinking it would be interesting to see how he would behave, going from a relaxed state to suddenly realizing he was in close proximity to a top-of-the-food-chain predator.

I placed my face inches away from the glass and showed some teeth.  He was completely oblivious, facing the other direction.  He was going to sleep, which is what I really needed to do.  My jaw muscles were starting to feel some fatigue so I finally resorted to a little tap on the window.  The squirrel turned to look.  There was sort of a surprised double take... for both of us.  And then he did something I did not expect.  He began to furiously paw at the window right at my face.  I'm pretty sure he wanted me to just go away.  I eventually got the message and slunk back to bed.  He curled back up and went to sleep.  I eventually did the same.

Story number two:  My friend Lee came over to hang out for a couple of days this past weekend.  He had driven over from his new loft apartment in downtown Milwaukee via the scenic U.P. route, along with his dog, Chui (pronounced "chewy").  Chui is 14 years old and moving pretty slowly these days.  She's a fairly big dog; husky-sized, with lots of fur.  Lee had tied her up on the back deck when he arrived and she seemed fairly content to lie there in the shade.

Mary, Lee and I were having snacks and beverages on the other side of the slider door that is the main egress to the deck where we could easy observe the mellow pooch.  We got to thinking it might be an okay idea to introduce Chui to our cats, Elvis and Luna.  They are strictly indoor felines and we surmised that they would scramble to another corner of the house and maybe gradually come back to investigate on their own time.  So Lee went out, unhooked the leash and brought Chui in to say "hi".

Our generally more skiddish female cat, Luna did the expected thing and high-tailed it for another room.  However Elvis, our male cat, who is much more curious and always present to meet visitors, surprised us.  He immediately reacted in jungle cat fashion and produced a guttural growl and began slinking menacingly directly toward Chui.  The growl turned into a hiss and the hiss turned into fisticuffs the moment he was in proximity.  He flat-out started punching the bewildered dog. "My turf" was the clear message.

Chui was banished back to the deck and Elvis let Lee know that he had no hard feelings by rubbing up against him and jumping into his lap.

So those are my two recent unusual animal stories.

Lee's visit was very nice.  We drove around the city, ate some good food, hooked up with a few old friends from the days when Lee was a Grand Rapidian; 16 years ago.  It was the tail end of my week-long vacation from chemotherapy.  On Monday morning, Lee came with me to the chemo lounge to keep me company for a couple hours before heading back home; the shorter Chicago route this time.  It was a routine infusion with the very professional Nurse Linda.  She scored me a different prescription to combat the Thrush, that has returned to my mouth after a 3-day hiatus from the last cure.  Abby brought in some broccoli soup and fruit salad for "captive" lounge chair lunch and and kept me company until the end of the chemo shift.

Now I'm back to the familiar routine of making the best of feeling lousy.  So far, it seems to be a little bit less lousy this time around.