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.