Dances with Cancer

 Unexpected Visitors On Monday night, I was asleep in bed when I heard the doorbell ring. I shook Tom to try and get him to answer it, but he was clearly out for the count, so I decided to get up, put on my bathrobe, and answer the door. The two people at the door did not appear familiar, but they seemed friendly and even hopeful. The man looked to be in his mid 30s, and was wearing an old fashion three piece suit and carrying a derby. The woman was older, probably in her 70s, and heavyset, but pleasant looking.  I invited them in, and they told me that they were hoping to see the house. I was puzzled for a moment, until they explained: "We built this house." And I realized they were Richard and Irene Rickard. I told them of course I was glad to show them around, and they eagerly stepped through the door. What surprised them both was how much the house had not changed. Richard commented on the beautiful unpainted woodwork that runs through the house, and said he was "so ...

  It's Not All Rainbow Farts with Jimmies or  Postcards from Anatevka So this post may not be quite as upbeat as some of the others. But the reality is, I'm reporting from Chemoworld, and it really isn't always a great place to be. In fact, a lot of the time, it sucks. There's a Yiddish word I have always appreciated - well, in fact, there are many. One of the wonderful things about Yiddish is it often has individual words that explain concepts, concepts that are more complicated to explain in English. Both Yiddish and ASL have it all over English, in terms of nuance and subtlety.  Anyway, the word I am talking about today is "emess." It is pronounced "EH-mess" and it means "the actual facts, the unvarnished truth."  (I always thought the network could have used this, and called themselves "Emess NBC.") My doctor, Mitch, doesn't know this word, but he gets the concept, and he understands that, when we talk, I want the emess. I...

  Bread and Butter for the Soul People who know me - people who have met me - hell, people who have driven past me on the interstate - will know that I am NOT one of those people who are into the various spooky kooky "self help" books that seem to come from an eternal spring. I don't lean in, and I don't thank my old socks for their service before tossing them into the rag bag.  That doesn't mean, however, that I do not support some of the concepts behind some of this best-selling crapola. And one of the things that I am a great believer in is gratitude. I have always said that I am not ready to die - trust me, I am still not ready. But if it turned out that today was the day I died, I would be surprisingly okay with it. Oh, sure, I'll rail rail against the dying of the light, but ultimately, if my time is up, I'm okay. I feel like I have had an amazing life. I have lived with and loved the same man for almost 42 years, and though it has not always been ea...

  Nadir at the Oasis Today, my body chemistry reaches nadir, the lowest point in the chemo process.  This means that my blood counts are most likely at their lowest, and that my body is feeling its most dragged out. It means I am at the highest risk of infection, as I have nothing left to fight it with. And yes, it is true that everything feels achy. My energy, which is better than it was, is still very marginal. I don't think I'll be laying any hardwood flooring, or installing wiring, today. but the hope is that my cancer is feeling equally poorly, and maybe even considering taking a vacation from me. Frankly, I don't think I've done a lot to make it feel all that welcome, So at the very least I hope it is drawing back its claws and rocking itself to sleep.Yes, I have little to fight it with, but hopefully it has little fight left in it.  The goal now is to regrow the white and red blood cells and have the healthy bits left inside me take charge. I have a feeling those...

  A Padded Steering Wheel for the Big White Bus Friday was an interesting day. My energy levels are definitely on the rebound, and though I am by no means strong, I was able to actually do a couple things. Sometimes this does not even actually involve doing anything, it is more that I can visualize the process of doing something, remember that I used to do it - and get Tom to do the real work. So several things like that happened on Friday. Because of my weight loss, I have been noticing (and this may be way TMI for most) that sitting on the toilet has become quite painful. My big concern is that, with no natural padding of my own, my legs quickly become numb. So when I go to stand up, I have stumbled - more than once. I ordered a padded toilet seat online, which came on Friday, and Tom installed it for me on the toilet of the upstairs bathroom. It is without a doubt one of the greatest inventions ever done. The toilet seat tends to be warm (an added bonus on these cold rainy days)...

 Hymie the Robot Loses CONTROL It's an interesting thing about writing a blog: the perspective that any reader gets to have is mine. I portray myself the way I want to be portrayed, and readers can ignore me or not - but I'm in charge. This is germane to what I want to talk about for several reasons, but let's start with the key point here: despite the fact that I'm in charge of what gets put here, the fact remains that I really can be an asshole. Okay, now that we got that out of the way..... This has been a difficult day. Last night I had a very disturbing dream (I know, dreams are about all I have, so sue me). I was lying on a conveyor belt (the kind with the big silver wheels - they used to have them in front of the A&P for customers to use to get their bags out front.) I was being slid down various ramps and through tunnels, and I had no way of knowing where I was going, or stopping what was happening. There were other people there with me - all of us being sli...

Postcards from Andersonville I've had several texts and comments prom people on the remarks I made last time about my perceptions during chemo. I feel like I'm sending back postcards from anther country, one most people don't ever want to visit but are very curious about. I just wanted to ad that not all my perceptions have been accurate. Some of them have been incredibly real, but also hilariously off base. For example: My hair has gotten to be quite long during COVID, and I brush it straight back and tie it, and it reaches almost to the small of my back. My hair is still very thick. When I brush it, I don't look in the mirror (these days I do that as little as possible), but I can feel my hair as I brush it. To me, it feels like my hair is white. I guess more a whitish-blond color, not pure white. But I have been thinking of myself as a guy with long white hair - something Tom keeps reminded me is not true. Sitting here right now, I can run my hand over my head, and f...

  Penny for an MRI Mickey Thanks for the MRI! Never a dull moment around here: today, Sunday, I had an MRI of my head. Always a nice way to spend an hour on a rainy Sunday, having someone microtome your head into sections (fortunately, just virtual sections.) The actual MRI was kind of interesting. You have to put on a gown and remove all metal from your body. They ask a lot of questions: have you ever been shot in the head? Do you have any artificial parts?  Then they take you into the room with the tunnel of love. There is a gurney to lie on, with padding formed around the head. They had me lie down, and I put ear plugs in my ears. Then they packed the padding tight around my head, immobilizing me and making it very difficult to hear.  Next they put a plastic face guard on my face. I thought that would be the tough part, but in fact, the mask isn't solid (I could see through part of it) and it just felt like I was suiting up for football (oh yeah, Dmitri, that is an exp...

 Where Did the Time go? So, it's been a couple days. And as many people warned me: they were rough. Actually, I feel like I missed the worst of it. I didn't get nauseous, I didn't have an upset stomach, and I didn't have "other gross GI issues" to deal with.  Mostly, I have been exhausted. And this is a level of exhaustion that I have never known before. Sleeping upwards of 18 hours each day, feeling completely like I have lost myself. Over the last couple days, I generally dragged myself from the bed to the couch, where I nap most of the day, then dragged myself back to bed. Even after sleeping for 15 hours, I would lie down at night and go to sleep. And my sleep wasn't light. Sometimes, when I woke up, I felt myself swimming up through what felt like piles of blankets, quilts and counterpanes. I could mentally feel myself pushing off stacks and stacks of covers, trying to get back to the light. It's a very weird feeling. I've also had some weird ...

Chemo vs Home Restoration When I had the infusion yesterday, I was told that days two and three tended to be the worst days. Both days I am still taking one of the chemo drugs, and they said that, particularly after the first infusion, people tend to have the worst reactions. I have just completed Day Two, and I definitely do not feel normal. My stomach feels queasy - not bad, just not right. Eating is still difficult, and my whole system feels very confused. Yet, I would not describe myself as very sick. In fact, I even had the time and energy to do work emails, to start rewiring an antique intercom system for the house, and to do laundry and dishes. This all makes me feel like maybe I'm still me in here. Having cancer has changed my attitude about my relationship with my body. From when I first got seriously ill, and they thought I might have stomach ulcers, H-pylori or diverticulitis (the good old days), I started thinking about how I am not my body. There are definitely two of ...

 Baby's First Chemo   Today, I had my first chemo infusion at Kaiser.  Despite being incredibly nervous, it went very well. The Kaiser nurses are amazing, and it was painless and, if anything, kind of boring. I was there for three and a half hours, and the worst side effect so far is that my back is sore from sitting so long. If you're interested in diving into this, here are links to the two different chemotherapy drugs I am taking: Carboplatin ( IV ) http://chemocare.com/chemotherapy/drug-info/carboplatin.aspx Etoposide ( IV on Day #1 and Oral liquid on Day#2and 3) http://chemocare.com/chemotherapy/drug-info/etoposide.aspx    The carboplatin is infused once every three weeks. I also get a dose of the etoposide while I am there, but then bring home pills to dose myself over the next two days.  In addiion, I am taking pain pills (both hydrocodon and morphine) and antinausea drugs to help keep me from getting sick. My doctor says there are many people who ha...

  And So It Begins The first week of February, 2021, I sent out an email to many of my beloved friends and family members: Hi All, I hate communication in the 21st Century - it all feels so impersonal to me. How I wish we didn’t have this COVID mess going on, so I could sit down with each of my beloved friends and explain what is happening. Maybe we could even have a party. But no, the universe is not designed that way now, so I apologize for the somewhat impersonal email. I just wanted to get the info out while it’s still fresh (after all, who wants stale medical news?) As you may have heard, I have been diagnosed with esophageal cancer. The specific type of cancer is "Neuroendocrine carcinoma” It’s a pretty unusual cancer for someone to get in their esophagus, but hey, I’m pretty unusual myself.  I just met with the oncologist, and she gave me a lot of info. There are three forms of this cancer: low grade, medium grade and high grade. No surprise that I have high grade cance...