And the CT scan says....

... all good news.  The CT scan results were, as expected, positive in that they showed nothing new and no new growth on the liver tumor.  I'd quote the report except they neglected to do the printout in my haste to get out of there.  It was the last appointment of the day.

In other good news, I just learned (while I was at the store buying feminine products for my ladies) that the Detroit Tigers swept the playoffs and are headed to the World Series.  I've seen none of it so far.  And if I were superstitious, I should probably consider not watching the World Series so as not to jinx the streak.  I only watched part of two different Tiger regular season games this year and they lost both.

So where do I go from the best possible CT scan results moving forward?  I wanted Dr. Scott to talk of some far off future where they'd check in again to make sure everything was still cool.  Instead, he talked about wanting to keep a close eye on me.  Maybe a chest x-ray and blood test in three to four weeks.  Three weeks!?  Really!!?  I was thinking it would be sometime after the first of the year.

The thing is, he's waiting for the Lymphoblasic Lymphoma to raise it's ugly head. The lion's share of the summer chemo was mostly about the metastasized esophageal cancer.  He chose a regimen that took a swipe at the lymphoma but to really attack and kill it is a two-year, intensive chemo blitzkrieg.  Quality of life would be very low and in all likelihood, I would not survive the metastasized esophageal cancer in that period.  He recommended I go with the "quality of life" and I am totally ready for that right now.  Quality of life, here I come!

You thought I was kidding regarding my whereabouts during the final innings of the Tiger's playoff sweep?

Strangely obsessed

What does a man think about after spending a summer being disappointed by the experience of eating?  I'll give you hint: it's a four-letter word that starts with "F".

 For the last few weeks I have found myself being food-obsessed.  When people look at my far-away expression and ask me what I am thinking about, it usually has something to do with what I am cooking for dinner.  You can ask anyone in my immediate surroundings who has spent some time with me recently and they will confirm that I am kind of crazy in this department right now.  I was caught the other day sniffing day-old caramelized onion residue from the edge of my cast iron pan and I was really enjoying the experience.

To be clear, I am not eating much of this food.  I am researching it, shopping for it, and cooking it for my family.  The sight, smell and consumption by others has been a surprising pleasure for me.  I've got my handful of go-to foods that I eat that aren't too disappointing and swallow easily.  I anticipate that this list will grow as I distance myself from chemo and thrush.  And I try everything, looking for that next taste or texture that will feel good in my mouth and move easily down my throat.  I just discovered that a shredded cabbage salad worked great having given up on greens and other vegetables.  Bread in any form, including pasta, is still in the "disappointment" category as are sweet things.  I can manage mildly sweet things like a flavored yogurt, but ice cream, chocolate, jams and candies are completely lost on me.  Peanut butter is my biggest loss.  I always considered it a staple and one of my favorite flavors.  I have to preserve that one in my memory and olfactory because in my mouth it just makes me sad.

Speaking of peanut butter, I just learned why Costco no longer carries the Kirkland natural peanut butter.  We've been missing it for a while.  (Marlee has never really had the regular non-oily kind and turns up her nose at Skippy and Jif).  As it turns out it has to do with stupid people.  Evidently, customers would buy it, open it, see the oil at the top and think it was spoiled so they return it.  Costco was throwing away tons of perfectly good, returned peanut butter every month (this notion kills me!) and finally decided it was not worth it.   The guy at the checkout says there is a new, 3rd party natural brand but it is now kept in the refrigerated section.

But I digress.  Do a few food anecdotes really betray an obsession?  The digression really is one of the symptoms.  I have all kinds of food anecdotes and all the time!  I'm following food blogs, watching food channels, being sidelined by Facebook photo postings of friends' dinner plates, taking gratuitous trips to the grocery store, reading cookbooks, asking people to describe what they had for lunch, and imagining how good a Reuben sandwich would taste.  Sometimes an odd ingredient or spice will pop into my head and I'll start Googling recipes to see what could be created with it.  Send me to the grocery store with a list and I'll come back with twice as much.  I bought pink Himalayan salt the other day.  It's pink and it tastes exactly like salt.  Supposedly it is mined in the Himalayas and has trace mineral elements that make it special.  I'm sure.

Later today, the food mill comes out and I'll be making homemade peanut butter and fresh squeezed cider from Honeycrisp seconds that are selling at Kingma's for a dollar a pound.

Obsession is not a good thing.  At dinnertime, when Mary comes home from work looking to unwind, she finds a crazy man in her kitchen.  I'm hoping this phase will soon pass.  As I can begin to eat more foods I'll begin to be satisfied in more ways than just visual and smell.  For now, the ritual of hooking up the food pump with 4 cans of Pivot 1.5 each evening is the anti-climax of each day.  And each morning starts with a serving of Greek-style yogurt.  I am perfecting my rice pudding recipe which will be an after-breakfast treat. Cardamon was a nice touch.

Thursday I'll have my CT scan results, which I predict will be stellar.  Next week is another Endoscopy dilation to stretch out my throat and make swallowing easier.  Clear sailing after that.

Looking to the end of the year

That last week of chemo was pretty uncomfortable.  It is true that the treatments are cumulative so that last dose seemed very hard to swallow.  Nausea will likely continue for another week or two.  My hands and feet are experiencing numbness; an expected but late-arriving symptom of Xeloda.  This phase should pass shortly.  I've been feeling chemically agitated at night and have not been sleeping that well. My blood numbers were a little low so I received another white cell booster shot along with some explanation as to why I was feeling more run down on the hemoglobin.  I'm really tired of feeling sick and am especially missing food satisfaction.  The "thrush" just won't seem to go away either but now that chemotherapy has subsided maybe my body will have a chance to recover.  I've added some over-the-counter pro-biotic supplements to see if helpful bacteria will restore some of the natural body chemistry. 

I probed my doctors and nurses to try and get some idea of what to expect now.  I guess it is an observation phase.  I'm getting another CT scan on Friday which will determine whether the liver tumor has shrunk and to make sure there are no new active hot spots.  If all looks good (I'll meet Dr. Scott for CT evaluation a week from Friday) then it may be 3 months, taking me to the end of the year, before I need another scan to see what is happening.  I like the idea of a brand new normal for a chunk of time.  I'm ready for it.  Wondering if it can spell the end of the food pump.  That is a ritual that I am very ready to give up, and at the same time am nervous about getting enough nutrition down the hatch to keep me going.  It would likely mean losing a bunch more weight.  I like the feeling of 170 pounds on me but I think my 6-foot frame could handle losing 30-35 more pounds if necessary... though it would be pretty difficult to put that weight back on for the presumed inevitable follow-up series of chemotherapy next year.  They like me being fat during chemo.

Today I am bidding adieu to Alice who has been visiting Michigan from California for the last 10 days.  We had some really nice times that included cooking, watching "Breaking Bad, designated driving, chemo lounging, and even finishing up her 2011 New York taxes.  She also took some photos of me on a beautiful autumn afternoon with her good camera. (I'll post a few of the better shots when she forwards them on to me.)  One evening, Alice indulged me a marathon viewing of my old Super-8 film collection, mostly shot in the late 70's through the 80's.  It was fun, especially looking at the stuff I shot when I was 18-years old and living in New York and experimenting with my then-new camera and all the possible frames-per-second shooting rates. Yesterday afternoon we stoked up a wood fire in the fireplace, first of the season, and played old familiar board games. 

I am relishing occasional, morning conversations with those of my friends with daytime flexibility. Yesterday it was Steve VerBerg, visiting from Madison.  I first got to know him at GVSU where he wrote for (and I believe, edited for some time) the college newspaper, The Lanthorn.  We got to know each other better after graduation through a mutual friend. Somehow we established a fairly short-lived annual ritual of a road trip pilgrimage to the Ann Arbor Film Festival. The films were always in the experimental genre and several of the titles we saw are memorable to this day.  Steve has been writing, editing and working in the newspaper industry since the 80's and it was interesting to me to talk about the state of journalism and the fate of newspapers; a pet topic for me.  I made him listen to my stories too.

I've been enjoying other visitors as well: Darius, Deb, Stephen, Bill, Sim, Nancy, Lee, Mark, Scott, Margaret, Jeff, Steve Klamer, Girbe, Bob, Teresa, Patrick, Ann, Bruce, WenJo, Kim, Oscar, Ralston, Janet, and of course all my fantastic regional family members... and everyone else who I am forgetting at this moment.  My friend Chad came by with an amazing little Farmer's Market care package along with a great conversation. Dan planted a garlic garden for me. Helen brought a troupe of volunteer high school labor to help me get my under-maintained driveway sealed.  Gifts are never expected or thought to be needed, but I was truly touched by these thoughtful, meaningful gestures.

By the way, I can get out too and even meet for coffee or breakfast, or a not-so-brisk walk somewhere.

The next couple of weeks I am exploring doing a little client work.  Time to get my editing chops back on the grid and see how that feels.  I still have pretty good energy in the mornings.  Looking to stretch them into good-energy afternoons and evenings.

Last week of Chemo kicks off

My wish for a last minute reprieve did not materialize. At 8:00am I showed up at the chemo lounge for a final week of poison torture.  I can do one more week standing on my head... well maybe sitting in a chair.

They were late calling me in for the requisite bloodwork and when I sat down in Dawn's chair (Dawn is the primo Phlebotomist), I got a bit of the story when the second Phlebotomist arrived (I don't know her name but based on one experience with her, she is on the opposite side of the competence scale from Dawn.) Dawn exclaimed, "Where have you been?".  The D-list Phlebotomist glared back with a "You don't want to know" expression.  I didn't want to know.  I was only grateful to be sitting in Dawn's chair prepared for an efficient, nearly painless blood extraction.

When I moved on to my favorite comfy recliner in the lounge, I popped a greek yogurt with strawberries and assessed my surroundings.  The lovely African American woman in my direct eyeline was quietly reading from a computer tablet.  A sleeping older man in the lounge chair next to her was being attended by Nurse Linda, my nurse, and that meant she would be in the vicinity more often.  Behind me on the other side of the half-wall was lots of chatter but it was all in Spanish and could be tuned out.  The empty chair next to me meant a wild card patient at some point but I was up for the risk.

Beth, the room house mother (not sure of her title but she sits at a Central desk and guides traffic and takes vitals) took my temp and blood pressure (normal-good)) and brought me an ice water. When Nurse Linda arrived with the positive results of the bloodwork, she applied the I.V. to my port and asked me lots questions about all my past issues and all the new ones.  This was a good start.  Linda and I are in tune with each other and I feel like I have a medical professional focused on my case.  I opened up a little more and asked her the same questions I asked Dr. Scott last week and only received quotes about philosophy of living each day to the fullest: "What can I expect next?".  Linda speculated that it might be 3 months between CT scans.  That would give me to about the end of the year to practice a new normal.  That is something I can work with.

The I.V.s start with lots of hydration with incorporation of trace minerals.  The good anti-nausea drug bags are added next, buffering the wicked, killer drugs that will be added hours later.

I fussed with my iPad that seemed to be having difficulty connecting to the free wifi network.  Turns out they added a new level of security that requires the pressing of an "I agree" button each time I log on, to absolve the hospital from some kind of liability I suppose.  I read my important email and deleted all the junk.  I caught up on reading news, wisdom, gossip and entertainment on the recent Facebook updates of my friends just in time to look up as my old actual flesh and blood friend, Steve Klamer, (from high school) strode in and plunked into my visitor chair.  Steve had just finished morning chores (dealing with the last of the corn silage) on his brother's farm. 

Steve lives in Seattle where he is a fine carpenter specializing in barroom counters and fine wood embellishments.  He also invented the "butt-board" which applies a fulcrum behind the non-tapered edge of a drywall board and creates a taper with an adjoining non-tapered board.  Perfect for large ceiling installations.  Steve also was a mountain climber with an impressive list of conquests. His love of solitary work, philosophy and deep thinking, and a serious shoulder injury has him considering a change of career,  possibly taking up long distance truck driving.  Steve's high school job was working on a dairy farm.  This was fascinating to me since everyone else I knew had jobs like dish washing and lawn mowing.  Once or twice I got up at 4:00a.m. to observe his pre school day routine.  I still remember his routine and all the crazy things he told me about the business.  Eventually, he even had the job of "AI", artificially inseminating the cows with this really expensive, champion bull semen, imported from the west coast that was preserved in tubes submerged in liquid nitrogen. I watched him do this!  Having this knowledge of the cow business in his back pocket prepares him to come to Michigan for a month or two in the busy season to help his brother, who runs a small Dairy farm by himself.

After setting Steve up with some coffee, we immediately launched into an extended discussion about the farming business in this new era of climate change (most farmers are in denial according to Steve) and genetically modified foods.  Steve believes cows are meant to be grass fed.  He also believes genetically modified seeds are resulting in a food chain that is effecting animals and humans in uncertain and slow to recognize ways.  It will be the new, less healthy "normal".  He speaks from some authority as a person with some pretty serious digestive conditions including diabetes and an advanced gluten allergy that incapacitated him for a few years. He's on a natural medicines kick that has transformed his life.  He also wants to cure my cancer.

Amy, my nutritionist popped in to discuss all my eating issues.  It was very timely.  I had wanted to know about probiotic supplements. Steve joined a very engaging discussion that also included Amy's intern.  The conversation eventually broke up as the first and main course of chemotherapy arrived.  At this point I'm feeling really good.  Fluids are topped off.  Blood chemistry is rockin'.  Buffer drugs are doing their thaang. Attitude is tip top.  I'm ready for the hour and a half drip session.

I pulled some Gala apples out of my bag and Steve and I munched and while we engaged in more topics of discussion. The first course of chemo dripped to a conclusion in no time it seemed. The chime came on and was eventually turned off to keep the peace by another nurse.  Nurse Linda had gotten slammed with other patients all at once and finally dropped by to tell me she still needed to finish up with one more person before she could administer course two.  That chemical needs to be administered manually through a syringe over a 10 minute time frame. She would be tied to me for that period so she needed to clear the transitions of other patients first.

That second direct infusion seemed to go very fast; all of a sudden, Linda was disconnecting my port.  She booted us out the door and I was still in high spirits and not feeling sick at all.  From experience, I know that discomfort will come tomorrow and build up to Friday when I come back again to have my fluids reset one last time for this series.

I invited Steve to follow me home for some homemade gluten-free chili.  I'm exploiting my current and perhaps last (for a while) pang of hunger before the chemo really takes effect.  With chili, Steve and I share some of the natural medicine that he has brought along with him.  Then he is off; out the door to do something about a field of soybeans.

I'm still feeling real good when my cell phone text message chime goes off alerting me that Alice's plane has landed in Grand Rapids.  She has arranged her own airport pick up.  So I engage myself with a large dish of corn tortilla enchiladas verde, knowing that by the time they are ready to come out of the oven, I'll have my regular family, plus one root family member present to enjoy them.

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.