The End

It’s not the end. As we all know, tomorrow is another day and flowers will grow and coffee will be overpriced, and inspirational phrases will get us through our sometimes crappy jobs, and life will go on. But this IS the end of this here blog about a man we love and enjoy who was forced to live with a strange house-guest named cancer.

This is not Chuck speaking - this is Alice (who calls Chuck “Dad” usually). May this post be stricken from the record if necessary for accuracy reasons. I’m sitting bedside with Chuck, both of us feeling like there needed to be another post. It’s been over two weeks since his stroke, and he’s now being comforted by the stuff junkies dream of, the drugs of Palliative Care. Palliative Care is just medical care with the goal of giving a patient the highest quality of life. Technically, he’s been receiving Palliative Care since his cancer diagnosis, but now he’s been given the golden key to the good stuff. That’s why I’m talking. This started out as a conversation between us, but quickly lost track:

Alice: We got home from the hospital and it took a couple of days to learn what your body’s capabilities were. A couple hilarious spills off the couch to be exact.

Chuck: *Laughs* Something about the snow leopard.

Alice: What do you want to say about the snow leopard?

Chuck: He looks on. Unrelenting.

In all fairness, there is a stuffed snow leopard at the foot of his bed, but it wasn’t the direction I was hoping for, so I’ll do my best to take it from here.

Hospice care isn’t what we expected. Chuck mentioned this too. There’s no big scary nurse giving you sponge baths and dictating your life 24/7. It’s actually a lot of nice nurses who remind me of a piano teacher Abby and I used to have. And they only provide as much support as you need. With Mary, Abby and myself treating home hangout time like a job, and an outpouring of amazing friends and family available constantly, we haven’t needed much support. But Chuck has still been considering calling in for a sponge bath.

Which brings me to my next bit; it would be the understatement of the century to say my father has people who care about him. Friends and family from near and far have come bearing gluten-free vegetarian treats and have overflowed his message boxes on every media platform. We may weary slightly of guests, but he doesn’t. It’s been a pretty constant Chuck party, and I can’t think of a better kind.

There are certain things, like losing his appetite and saying goodbye to friends that we all knew were doing to be difficult. The unforeseen challenge of the last couple weeks has been the itchy skin that we’ve learned isn’t uncommon with liver failure. There’s nothing graceful about it, and there’s just no “good stuff” drug for it that helps for more than a short time. The silver lining is the consistent loving human contact he gets from lotion rubs. I’ve wondered more than once if he’s faking the whole sickness thing just for the foot rubs. I might consider it myself.

The bucket list that Chuck outlined for me the night I got to the hospital was exceptionally manageable. We played skip-bo. We saw Lake Michigan. We drank awesome milkshakes. We brought cookies to the nurses at the Lacks Cancer Center. I guess someone like my dad doesn’t have a lot of last minute amends to make. He’s got no fear, which is good because fear has no place here. Marlee and Isabel graduated high school yesterday, and are starting new chapters in the unknown. I've found myself to be the oldest in the next generation of Petersons, at the age my Dad was when he owned a house and had a one-year old kid. I don’t want to speak for Mary and Abby, or the others who have spent time in our living room recently, but there is comfort in the fact that we are all hurtling towards the unknown together. And if Chuck has no fear, I don’t either.

If there’s one thing that sticks out from Chuck’s depiction of life with cancer, and what he’s reminded me lately by still making hilarious well-timed quips when I thought he was sleeping, is that there’s no use taking anything too seriously. Life is absurd. That you can count on.

The beginning of the end

I knew I would have to write this post at some point but it seems strange after feeling so optimistic about treatment options.  I've always known this cancer would kill me and maybe it is somewhat of a relief to finally know how it would handle the job.  The answer is: by strangling my liver.  Apparently you need a liver more than you need an esophagus. That is now clear to me. And the cancer is not above a little vandalism along the way. The time since my last post has been filled with drama. As you shall see.

It started with me noticing  that my urine had changed to a darker shade.  I assumed it was dehydration.  But when  I went to chemo on Tuesday my nurse told me I looked jaundiced. The blood tests confirmed that my bilirubin numbers were quite high.  I had never heard of bilirubin but it is the stuff that makes your poop brown an your pee yellow.  A normal level is 2 and mine was at 8. Chemo was cancelled and I was scheduled for another CT scan.  There are several conditions that lead to elevated bilirubin levels and the ones that can be fixed can be identified through scans.   A CT scan is no big deal any more but I'd just had one and was not eager to have another. This one was a "wet read" meaning I had to wait around for further instructions after the results were shared with a doctor because if there were blockages, they would want to act fast.  I was real grumpy because I was hungry and not allowed to eat. The word finally came to "go home" no blockages were discovered. This was somewhat bad news because this was one of only a couple curable conditions that cause bilirubin a to spike. Similarly I was contacted and told to report for an ultrasound with pretty much the same result.

Meanwhile it had become pretty obvious  that I was jaundiced.  I could now see it in the bathroom mirror and the whites of my eyes were no longer that.  Also my urine was pretty consistently the color of root beer.  Normally, the liver deposits these waste products from breaking down tired red blood cells into your feces. Abnormally it goes into your urine instead and your poop is left pale.

I began to understand that the only remedy left was liver transplant and I knew I was not  a candidate for that. I began to fear that I was experiencing liver failure an I had not yet talked to a doctor. Thanks, Internet!  The symptoms were listed and I had them all. My next appointment with Dr. Kryjewski was the following Tuesday and I was already anticipating the bad news.

And then on Monday the story took an interesting turn. I had spent the afternoon with the children of John Douglas, Grand Rapids Press long time columnist and film reviewer who had just died suddenly from recently diagnosed pancreatic cancer, and I had agreed to help them with a tribute video since he had been a great supporter of GRTV through the years. I was doing some yard work with Mary. We were about to unfold a pool cover and as I was suggesting a method, I heard my voice come out in a squeaky, funny way.  Mary asked me to repeat what I said and she sounded concerned. Once again, my voice came out squeaky.  I started laughing because it sounded so ridiculous. Mary said, " I think you are having a stroke". I had to beg her not to call 911. I felt fine and not a bit foggy. I had to agree I would go to the Emergency Room and managed to persuade her that it would not be in an ambulance.

It was approximately one year ago that I had experienced a minor stroke or TIIA and my ER experience was about the same.  Stroke symptoms skip to the head of the line. Triage ran me through some stroke tests, squeezing fingers, etc.  and could not see anything that looked like a stroke, just like last year. But they take no chances and I was soon on a gurney in a treatment room. Triage mentioned that I looked like "a walking highlighter marker" and they would like to look at that as well. Again all the tests seemed to come up negative for stroke but they got me in for yet another CT scan, this time of my head instead of my abdomen. While waiting for the results, at some point I reached for my glasses that were resting in my lap. But my fingers would not work. We called the nurse back in and clearly something was wrong. My face was droopy on the left side.  An MRI was requested and I was told I would be admitted over night. 

The MRI was scheduled for 10:30 that night and a room was prepared. MRI's are quite unpleasant with all the banging and sci-fi sounds. By the time I got to my room, the results were already in.  I had experienced a series of small strokes or infarctions as they call them. Sounds dirty to me.

I slept poorly. In the morning, Dr. Kryjewski showed up in my room about the time I was expected to show up at his office for my appointment.  He pretty much confirmed what I was suspecting.  I had reached the end of what could be done about the jaundice/belirubens/liver failure. My chemo days are officially over. This is how I will die. Belirubens reading is up to 20 and if unchecked. This will overwhelm my system in 2 weeks  to 2 months, not really enough time to heal the stroke damage. Maybe enough time to get one of those handicap things for my rear view mirror so I can enjoy convenient parking in my days left.

Next comes my decision about which Hospice Organization to choose.  Once again. A rather simple choice on a difficult path.

Alice showed up last night in my room thanks to a sweet gesture from her boyfriend Zack who bought her a plane ticket and made it easy to come Abby just showed up thanks to her mom who droves across the State to pick her up in Detroit.

Now I am plying a morbid game with every activity.  "is this my last________" fill in the blank; Yesterdog, chocolate chip ice cream, movie, or whatever.  It actually started a couple of years ago when I bought an 18-pack of at soap and wondered if it would be enough to last for the rest of my life.  There are still two bars left. May have to kick up the frequency of my showers.

Seems to be working

To quote from the CT Scan report summary:

"... in general, there has been response to treatment with stability and decrease in multiple metastases, and an increased degree of necrosis of the large liver mass and conglomerate."

There were some tiny lesions in the lungs that enlarged (we are talking millimeters) but the doctors consider this as an overall indication that the current chemo is working.  I knew this already because I have been feeling better, pretty much from the week that they started administrating Paclitaxel. And side effects have been close to nil, aside from hair loss.

On Wednesday, the day after my doctor visit with this report, I got a call from Ann Arbor saying they had an opening in the study and "how is the current therapy working?" I was able to tell them that my response to the drug seemed to indicate its effectiveness.  The woman at the other end of the phone was congratulatory but I must say it felt slightly strange to be clutching a bird when there were two birds perched in the bush right in front of me.  As I mentioned before, they won't take me off effective therapy for experimental therapy, even if the experiment is in the exciting, cutting edge arena of gene therapy.  I guess it is a good problem to have.

So I remain on my current regimen of chemotherapy once a week (Tuesdays) for three weeks on followed by one week off.  It's pretty easy, especially as spring is breaking out all around me.  The cherry blossoms are buzzing with bees, the lawn is full of violets, the goldfish are once again interested in food and the lily pads are pushing up from their pot at the bottom of the pond.  My thoughts have turned to gardening and the new raised beds are already demonstrating fertility with pea and bean plants poking their heads to the surface.

Back to Ann Arbor

It's a long way to go for a conversation.  But it was a good conversation to have.  Ann Arbor Cancer Hospital called me and asked that I come down and talk to them about my inclusion of a phase one trial of a new medicine for solid tumors.  The week before, they had requested foundation one testing results from my doctor based on my genomic profile. So Thursday I zipped down to meet with a Dr. Schneider and some of his team.

I like the idea of being part of cutting edge science that is learning how to cure cancer.  I also enjoyed learning about how a drug goes to market.  Dr. Schneider said that this drug was working with my own immune system, "teaching" it to specifically identify cancer genes and attack those cells.  I know from watching "The Emperor of All Maladies" that this is the most promising new horizon for cancer research.  He said I was a good candidate but there were currently no openings and besides, they would not take me off a therapy that was working for one that was experimental.  But people are removed from and added to studies all the time and I should stay in touch and let them know if at any time my current therapy was no longer reducing my tumor.  It is great to have this as a back up!

They left me with a packet explaining in great detail the nature of the study, what could be expected, and everyone's rights and responsibilities.  I learned that this drug was tested with monkeys so this group would be the first human trials.  They saw promising results with the monkey tests and it also helped them with estimating dosing and predicting side effects; primarily raised blood pressure and bleeding in the digestive system in patients with bowel tumors.

It's all a bit anticlimactic and ideally I would not need to resort to a trial for some time.  My next CT scan will be on May 1 and so I will know more a few days after that.

C Stories

This week is a "rest" week after my first cycle (3 weeks of once-a-week infusion) of Paclitaxel.  Early signs are very good.  First, I have zero side effects that I am aware of.  No nausea, no appetite loss, and no hair loss (though I'm told that will come).  And second, the pain jabs in my liver and my gut pain in general have mostly ceased.  I still have gut pain following eating but that has been consistent for a long time.  If the body truly knows, cancer is being killed.  I met with Dr. Krajewski yesterday and we decided to do another 3-week cycle with just Paclitaxel.  We can always add Ramucirumab down the line or try it by itself after Paclitaxel fails.  I'll get another scan in 4 weeks to see if it is working like I think it is.

Two disclaimers:

1. I started using Turkey Tail supplements at the same time that I started this chemotherapy regimen.  My brother, Rob, sent me these dried mushroom capsules that are known to boost the immune system in conjunction with chemotherapy for breast cancer.  I should have waited a month or two so I would have a quasi-scientific comparison.  But these might be a factor in my positive results.
2. I had a blood transfusion.  Sometime after my first cycle, my hemoglobin levels took a dive again.  They decided to give me 2 units of blood this time.  It was a weird experience.  I felt like a vampire.  Particularly in that I felt great afterwards.  I had no idea that I had been dragging so badly.  My latest blood tests show normal levels in all the blood elements.

 

A news story that caught my eye was a followup on "Cassandra", the teenager from Connecticut who was forced, against her will, by the state to undergo chemotherapy for her curable lymphoma.  Well apparently she is kind of glad that her cancer is now in remission.  She indicated that the chemo was not so bad.  Maybe the state was right this time.

I've also been watching the new 6-hour, 3-part documentary, The Emperor of all Maladies, on PBS.  It is really quite excellent.  I particularly liked the first 2-hour episode which focused on the history of trying to understand and fight cancer.  It is a film by Barak Goodman based on the book of the same title by Siddhartha Mukherjee and "presented" by Ken Burns in his engaging style of filmmaking and writing.  Six hours is a lot of time to spend on such a dark topic but it is a good way to get up to speed on where we have been and where we are going; what cancer is and what it is not.  I have not yet seen the third episode (premiering tonight) but if you can spend just two hours, watch episode one, Magic Bullets, which will make you feel like a bit of an expert on the basics.  You can watch it on line at that link.

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ADDENDUM

Hair started falling out today.  Should have knocked wood yesterday when I wrote that thing about not losing any hair!

Also, I watched part 3 of "The Emperor of All Maladies" and it was excellent.  Shows where cancer research is going.  The first part of the episode discussed "palliative  care" which is sobering but of great interest to me as that is the type of care I am receiving.  But it went on to talk about the genome research.  All cancer is caused by gene mutation.  About 50% of the cancers are linked to an outside force that causes gene mutation (smoking, viruses, obesity, radiation, chemicals, etc.) and about 50% have an unknown cause.  The first 50% can be affected by behavior changes and prevention.  There are lots of promising developments in gene therapy and teaching the immune system to attack cancer cells.

Second Opinion

Mary and I just got back from Ann Arbor for our consult with the University of Michigan Cancer Center. It was a great trip all around and we are feeling particularly positive about our "second opinion" and some new opportunities for future treatment.  And to top that off, I just checked the pond in my yard and discovered that at least one goldfish has successfully wintered over under the ice.  And where there is one, there is bound to be others.

Our consult was Tuesday at 10am and rather than get up super early for a cross-state commute, we accepted an invitation from Mark and Susan Pearlman to come down the night before, have dinner, sleep over, and make it a leisurely 10 minute ride to the hospital after a nice homemade breakfast. Mark is a doctor at the very same Cancer Center and more importantly, he and Susan are the parents of Zack Pearlman, a dear friend of Alice in Los Angeles.  We quickly discovered that the whole Pearlman family loves Alice and were willing to extend that respect to Mary and I.  It made all the difference.  We were super comfortable in their home and with their company.  We ate good food, drank good wine, visited with Zack's Sister Allison and her spouse, Leanne (also friends of Alice) and had great conversation until bedtime.

Mark cancelled his morning meeting so he could make us omelets from the fresh eggs of their backyard chickens before heading off for work.  He advised us to get to our appointment early but to be prepared to wait.  We socialized with Susan and made the decision to come back to the house after my appointment to pack up. Well, we did not get there early but rather right on time. And no sooner than I finished a one-sheet questionnaire, my name was called and they took my vitals and ushered me into an examination room.  

We waited hardly a minute before we were welcomed by Dr. Manali Bhave (hope I got that name spelled right) who is in training with the center's senior esophageal cancer specialist, Dr Susan Urba. She took us through my cancer history, fixing some mistakes in the record and ultimately confirming that the choices that my doctors in Grand Rapids were making were right in line with what they would have recommended. Dr. Bhave possessed the gift of being able to type notes while she looked over her shoulder and talked to me. U of M had consulted on my case before and had a record of my cancer DNA which was compatible with successful trials with the drug, Ramucirumab, Dr. Krajewski was considering. After discussing options, she left and came back with Dr. Urba.

Dr. Urba started out by acknowledging that she had received a note from Dr. Pearlman mentioning our friendship and to give me her best care.  Of course she would do that anyway but it felt good to have the connection made.  She concurred with all the stuff that Dr. Mhave told us, recommending that we move forward with the recently approved cancer drug as a companion to the drug Paclitaxel that was started last week and went on to talk about getting me into a "phase 1" trial.  A phase 1 trial can only happen at a University hospital and it involves testing promising new treatments that are not yet approved.  This could happen only depending on open slots and after this current regimen is finished.  The nice thing about it is that it leaves me with more options should this current treatment be ineffective plus the opportunity to be part of scientific discovery for future patients with my cancer.  She thought my overall good health would be a factor in getting me into a study.  She said that someone who had lived three years with this cancer and that much chemotherapy she would normally expect to be brought in in a wheelchair.

We left feeling very good about future options.

We went back to the Pearlman home and had coffee with Susan.  We wanted to take her out for lunch but she was waiting for a delivery and had to pass.  We said our goodbyes and found a terrific Korean restaurant, Tomukun, right next to the Michigan Theater. And then it was back on the road. Two and a half hours and we were home.

Tofu Stew special with all the added "taste" extras

Tomorrow morning (Wednesday) I will see Dr. Krajewski and take on my second dose of Paclitaxel.  The new drug, Ramucirumab, will need to be approved by the insurance company so that will likely start next week.  I'm also hoping to get a new pain drug as Ibuprofen (which works great) is not a good pairing for gastrointestinal complications.  Unfortunately for the first time I am experiencing pain in the liver as one of my symptoms.

And winter seems to be waning so soon I can start getting a bit more exercise and revisit my fish feeding ritual.

Turning the page

  It was not unexpected.  I told my doctor 2 months ago that something was happening down in my liver region.  The body knows.

Doctors are pretty easy to read too.  When Dr. Krajewski came into the room he said, “Well let’s start with the labs”, implying that good news would be first.  But he did get around to the results of the scans and they revealed what I had expected.  The regimen of chemotherapy that I have been on for nearly a year was no longer working.  The primary tumor on the liver was nearly double in size since the last scan in November.  And there was some other evidence of “worsening metastases” in that region and around the abdomen.

The thing about chemo when you are employing palliative therapy is that you keep trying new drugs until they no longer work.  Dr. K had a list of the stuff that was known to be effective on my kind of cancer and he had crossed off all the drugs that I had burned through over the 3 years.  There were still a few left and he was recommending an old drug, Paclitaxel, along with a new (approved just last year) companion drug called Ramucirumab.  Because of the newness and some the side effects of the latter, he recommended that I get a second opinion from the University of Michigan Hospital who would have more experience with patients on this drug.

So we are going to start next week with Paclitaxel and if the geniuses at U of M think it is right for me, we’ll add the Ramucirumab in about 3 weeks.

I’ve really liked that previous regimen because the side effects were so tolerable.  There is no telling which of the side effects will come into play with the new drugs but it looks like losing my hair is a common one.  I can live with that.  I just hope it does not affect the taste of food.  I would be sad to lose that again.

As I said, it was not unexpected so I am not at all devastated.  I am grateful that I still look healthy and feel pretty damn good.  I am also in no hurry for the spring or disappointed in cold temperatures.  It is all good and the warm sunny days will come, regardless.