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 cancer. With me, it’s always whole milk, real wood, high gloss.  I take my cancer like I take my oreos. No imitation (or Hydrox) for me - it;’s high grade all the way.

The cancer is also Stage 4. What this means is that it is NOT curable. So whatever happens, the neuroendocrine cancer and I will be together for as long as I’m around. I’m thinking abut naming it. Name suggestions are welcome.

Okay, so that’s the bad news. Take a breath. It gets better.

The good news: the cancer is treated by chemo, and most people respond relatively well to the treatments. Most people tolerate the chemo with few side effects, and they do okay on it. The way it works is, I’ll be taking two chemo drugs. One is done via infusion, every three weeks. When I go for the infusions they will also give me three pills to take over the next three days. Then I get a three week break from the drugs until the next infusion.

Assuming the cancer responds by shrinking (which is does in 70% of the people), I will be able to go on this way for quite a while.If the cancer responses well enough, they will even give me chemo vacations, where I can stop taking it and just be monitored until such time as the cancer starts to grow again. As you know, I hate to travel, so a staycation without chemo sounds lovely to me. With the palliative care team on my side, I should be able to manage the side effects, keep working, keep moving houses, etc.  If the first chemo cocktail stops working, they will move me to others. So I feel like there are lots of options.

I have a few real positives in my corner:

• I have a huge circle of friends and family who love and support me. It has been pretty overwhelming how many people have stepped forward to offer their love and support, and to see how important I am to so many people. It gives me a lot of strength. I addressed this email to the people who are most important to me, and for whom I had email addresses. There are almost 100 names already. 
• I have things to do. We have a house in Hercules that we’re going to move to Pinole and restore. We want to buy land in Bodega and move the Kenney Cottage there. I’m working on a project to build housing for people with Mental Illness at the Ashby BART station (right behind the Ed Roberts Campus.) I have a son who is getting married, and there will be grandchildren I plan to bounce on my knee. I’m sticking around.
• I have a lot of role models. Some are gone, some are still here, but all have had cancer and beaten every odd imaginable. John Roberts lived 18 years with his cancer. Ann Nathan, who was told “90% of the people with your cancer live a maximum of 6 months, and we have never seen anyone survive a full year”, lived for 15 years. Karen Weinstein and I have decided to be cancer buddies and go through cancer together. I may not make it to 87 as planned, but I do plan to stick around into my 80s. Feel free to hold me to it.
• I’m a tough old bird. As my daughter said, “you tend to bulldoze your way through problems, so I’m sure you can bulldoze your way through this.” I like the image (though with my vision, maybe driving a bulldozer is not the best idea..)

The question everyone keeps asking me is, “What can I do?” Trust me: you are already doing it. I feel your love and support constantly, and that is all I need. But for specific suggestions:

• Make sure no one plays that “Hallelujah” song anywhere in my vicinity. I hate that song almost as much as I hate “Little Drummer Boy” and “You Light Up My Life.” 
• I also don’t want anyone sending me “healing crystals” or anything like that (crystal stemware, however, is fine.) 
• I appreciate the inclination to reach out and call/text me, but please recognize that I am feeling a bit overwhelmed, and I can’t respond all the time. If I don’t respond, it doesn’t mean I don’t want to talk to you, it means that I just can’t. Here’s a hint: if we’re texting, and I end a text with “xoxox”, that means “I love you, let’s shut up.”  Again the 21st century technology is just so damn intrusive. Am I the only person who still writes on stationery and mails letters? Give it a try, on my behalf. 
• Try not to worry.

The first chemo is happening on Monday, so after that I will probably know more, and will be able to judge how well I tolerate it. Keep your fingers crossed.

Thank you all for your love and support. I plan to get through this with as much grace as I can muster, and plenty of gallows humor. 

Dmitri