Let the Show Begin

My oncologist signed off on my treatment plan today and I had my first chemo treatment. An IV drip lasts about 4-5 hours and they pump you full of lots of saline and a variety of chemicals. A cycle lasts 21 days, and I get drips on days 1-5, 8, and 15. My cocktail is a BEP (Bleomycin, Etoposide, and Cisplatin) which is apparently so effective at fighting testicular cancer that they don't hold back from slamming you with it. So far I haven't felt any side effects besides a metallic taste in my mouth, but the week has just started. I've been prescribed some medication to help keep my appetite and digestion system on track. I've already said goodbye to what's left of my hair, but we'll see what happens.



And if the presidential debates leave anyone out there overwhelmed with nausea, I just might be able to help you out.

Nutrition Guide

In order to prepare for the next few months I got a Chemotherapy Survival Guide from Amazon. It's excellent, despite the obnoxiously soothing purple and light blue cover. My favorite chapter is on good nutrition, which is a bit different than anything you have ever read on the subject. Here is a quote:

"One apple has about 80 calories; one slice of apple pie has about 400. If your appetite is poor and the pie appeals to you, eat the pie and get five times as many calories. Instead of drinking a plain glass of milk, make a milkshake with added ice cream. If a liquid diet is all you can tolerate, make the liquids high in calories. Use a blender to make sherbert shakes. Make your hot cereal or cocoa with milk and half-and-half instead of water. Add cream to your soups. Spread mayonnaise, peanut butter, or cream cheese on bread. Smother vegetables with cheese or cream sauces. Drink eggnog with your meals."

So as you can see, Sheela and I are getting to work fattening me up.



UPDATE (10/6) : The nutritionist gave me some better advice, and all you health fans will be relieved to know that the fats are out, more or less. My body needs proteins to rebuild, in part so that my liver can process the chemo so I'm eating more meats and fewer baked goods.

Spots and Chemo

Surgery is out. My catscan shows that I have two spots on my lungs, both of which are suspicious but are too small to biopsy. The RPLND surgery looked pretty rough, with a foot long incision across the belly and 6 weeks of recovery time. That operation may yet be in my future some months down the road, but because of the lung spots Im headed straight to chemotherapy. They avoid doing both at the same time because the chemo works by preventing cells from dividing, which also makes it tough to heal from surgery.

Chemo will be tough. I'll lose weight and hair, but it feels good to have a plan and it will all come back. I will most likely start on September 30th. Cycles are three weeks long and consist of five days of IV drip medication in the hospital followed by two weeks of recovery. I will be an outpatient through the whole process and will be staying at home during this time. People have asked how they can help, and I will probably need rides between home and the hospital. I will post the dates when I know them along with some information that people will need to understand before taking part. Thanks in advance.

Talk About It

The other day while I was getting another test, a fellow patient told me about a place in Newton called The Wellness Community. I had heard that the problem with finding a support group when you have testicular cancer is that your odds of survival are so good compared to other types that you wind up feeling like a jerk. However I think this place will work. The central philosphy is that cancer patients will do better if they take an active role in learning about their condition and work with their doctor instead of just waiting for a solution to come. With lots of help from Sheela, that's what I'm trying to do. They also offer all kinds of Tai Chi and Yoga classes, with the idea that stress relief is also important. I used to do those things on my own so it all works for me. And best of all, there is no bible or scientology angle at the center. I think this is the place.

No Big Answer

I met with my oncologist today at Dana Farber and I and got some more info on where I stand, which is a little different than before. Overall it's still good
1) My tumor was 90% seminoma, which is the type you want. (good)
2) The cancer has in fact spread to the lymph nodes in my abdomen. (bad)
3) Bush is ahead in the polls (an actual problem)
4) Sheela got me some more Wacky Packages stickers, including a "rude awakening alarm clock" and a "Brooklyn English translator" (excellent)
5) I got tickets for the Pixies concert in december. (solid)

The decision now is to operate on my abdomen or to begin chemo, but they need to do more tests, a catscan, and other fun and exciting events over the next week. The good news is that the blood markers and pathology indicate that surgery alone is an option right now. Just surgery would mean serious observation for the next couple years and maybe chemo down the road. I'm supposed to know next week after they get more info.

I keep waiting for the big answer, but I think it's more of a long process with an occasional decision and lots of blood tests. So the message to take away is that Im getting closer to an answer and a plan, and the overall prognosis continues to be excellent. The unknown part is whether I'll become thin and famous or I'll be getting some cool new scars. Maybe both.

Alert the Media

I came back to work today and I sent out a message to all of my coworkers telling them about my news. The idea was to tell everybody at once and let them know that it's okay not to say anything when they see me getting a cup of coffee. Please don't interpret it as "Don't talk to Jon Ever," because that's not what I meant. I just didn't want to dread going to work because I'd be talking about cancer all day. Here's the note:

Hello,

Those of you who know me may have noticed that I've been out for the past week or so. I'll be back for the next couple days, and I also have an explanation for my absence. Two weeks ago I was diagnosed with testicular cancer, which of course came as a bit of a shock. Fortunately it is a highly treatable form of cancer(95%), as Lance Armstrong has shown over the past few years. There are some great resources on the internet which explain the disease, including http://www.tcrc.acor.org

Last week I had surgery on my left side at Brigham hospital in Brookline. An underwriter no less. Soon I'll be getting my pathology report and learning about my future treatment which could include chemo, radiation, or simple blood tests.

As you might guess, I have a lot on my mind, but I'm glad to be back at work in part because it is something I can do to make my life normal again. Towards that goal I have a small request which is that you help me think of work as a sanctuary where I don't need to think about cancer all the time. I'll have some stories to tell and there will be news as different tests come back, but please let me tell these stories when I'm ready. Oddly enough, perhaps the best way to show that you care is to not ask. Or, ask Robin or Ken who I will be keeping up to date with the various ups and downs.

I have a lot of friends here, and I'm lucky to have you all. I appreciate the support and in the coming months I know I'll need it.

Thanks, Jon

Weather Maps

I’m feeling better after my operation, and will be going back to work tomorrow for a couple days. I've been reading up, it's a strange place to find yourself in. To be honest, Im at the stage now where I just don't get it. It's not a 'why me' thing, because I dont think I would have qualified for any exemptions even if they existed. It's more of a 'what are you talking about?' or for you folk fans 'wot happen?!' thing.

When I travel, it's always the same mundane moment when i truly understand where I am. For me its not the groovy marketplace, or the sound of other languages, or the exceptionally greasy food. I understand where I am when I see the local weatherman doing his report and the satellite map is centered on Japan, Vienna, Indiana, Hawaii or wherever. The center is somewhere else with different patterns and that's the moment when I understand. At this point the closest thing that I have to a weatherman is the hospital wrist band they put on me. I usually keep it on for an extra day and then I feel less confused.

Turtles

I'm all sensitive now, I tried to save a turtle that was crossing the street the other day, but I was about thirty seconds too late. He got mashed. I'd like to think my odds are better than his were.

I'm doing allright, my operation was yesterday so today I'm at home, walking around like an old man. I'll probably be back to normal in a few days. Upon further reading and the actual experience, it doesn't look like I'll be any different emotionally just because I'm different physically. I was curious about meeting a more relaxed and less hairy version of me, but apparently you need to lose both testicles for changes like that to happen. I'm unique, not eunuch.

I go in for a catscan tomorrow but the big appointment is Thursday 9/9. The pathology on the tumor will be done then and I'll find out what stage I'm at. We're rooting for stage I, where nothing has spread and they just do blood tests for the next couple of years, but I'm reading up on treatment and getting ready for anything.