No Food For You

Hi. I haven't written in some time, but I'm still here, so I thought I'd continue.

I just looked back at my last post. January 26. It's now May 17.

The last post started in much the same way. And to be honest, not much has changed. I don't think.

My stomach still doesn't work, and hurts all the time. Over two years now, but at least now I've found the right mix of pain killers and such that make getting through the day a lot less arduous. I have more "good days" now. Days where I can get up and do stuff instead of being too weak, sick or hurt to get out of bed. Non-chemo weeks mostly.

I still can't eat really. I miss it so much. I used to be a foodie. I used to cook meals that spent hours in the oven, falls off the bone, twice baked, steak, stew, sushi, great sandwiches-it's all about the bread. Man, I miss food.

We take eating for granted, but it's such a big part of who we are. (If you are what you eat, then what am I?) Food helps manage our lives. It's part of why people go out. Shop for food in a great market. Eat in a great new restaurant. I can't believe we got a table. It's what we do to take a break. It's what we meet with people over. A meeting, any kind of meeting: social, business, friend, hungry, whatever. It's always there in the middle. Not having access to that. Not being able to do that. Add in the pain and fatigue. Not being able to eat has knocked me out of a part of the world. And I really miss it. So much so that despite my condition, I still love to talk about it, watch television shows about it. The ones where you really get to see them cook. From the stove to the oven, and he's cooking that at a low heat, a little olive oil in the pan, let that heat up and throw in your onions, slicing it diagonally and very thin, everything's better with bacon.

There are so many food and restaurant commercials. I love them. Although, watching them as well as the food TV is also slightly tortuous and masochistic. But they make everything look so good. I know I can't partake. But, I still try sometimes. I eat a lot of ice.

To live, I get my sustenance intravenously, 12 hours a day through a tube. It's this big bag of milky liquid filled with calories and vitamins. It has a long tube that feeds into another tube on my arm that flows directly into my blood stream. I carry it around on my back for a few hours, then go to bed with it still connected. It has a pump inside that makes this constant, whooshing sound. I don't notice it so much anymore, but I still hear it. I disconnect the tube in the morning, throw away the empty bag. It's feels good when I take it off. It's like removing a tether or a leash.

I eat a lot of ice. I sometimes add a little juice or iced tea. I sometimes drink Slurpees. Slowly, and only a few slurps. I eat chips that are very much processed, like they once were whole potatoes or parts of parts of potatoes, pulverized, then brought together again. Like a cafeteria chicken patty. If I take a bite of that or most anything, I usually become sick and throw it up in a manner of minutes. There were some bagels, lox and cream cheese in the house. I just had to have some. I had 1/4 of a bagel, toasted, light cream cheese with a thin layer of lox. I took tiny bites. I couldn't finish it, and threw it up soon after, but it was so worth it.

I'm trying miso soup, chicken soup, any thin soup. Just a little, mind you. There was white fish salad left over. I had a bit of it on a cracker. And if I it happens that I can get something down, I can' t eat much of it. They cut away part of my stomach and part of my esophagus, and from what remained made a brand new, much smaller stomach that supposedly was cancer free. It worked for a few weeks, but then gradually, eating or even getting water down started to become more and more difficult. Soon, my new stomach didn't work at all. It still doesn't, meaning it doesn't digest food and push it on through the body the into the intestines like it's supposed to. It just sits there like a stone cup. And it's so small. But, I keep trying stuff, knowing it will probably make me sick. Sometimes, it doesn't.When that happens, I feel very full after only a few miniscule bites. I sometimes try to push it a little and keep eating. Then, of course, I get sick. But, sometimes not.

They say it's the chemo that's killing my stomach, but nobody knows for sure. My chemo routine is pretty intense. From nine to five I sit in a chair in the doctor's office and bag after bag of fluid is pumped into the port I had implanted in my chest. The port is a round rubber stick pad about the size of a quarter. A needle is stuck into it, allowing the chemicals to feed directly into a large artery near my heart. I sit there with a few other people who come and go. I'm there until much of the staff has left. Sometimes, there's one person there who came in later in the day. When I leave, they attach a chemo pump to me that runs for 24 hours. I have to return the next day and have it removed. Three weeks on, two weeks off, scan, see how it's doing.

The answer to that is so so. I have a tumor in each of my lungs. And a brand new tumor has returned where the old one was. The one in my esophagus/stomach that was supposed to be removed by the chemo, the seven-hour long surgery, and the month of radiation. But, the chemo, for now, is keeping the tumors from growing any larger, and keeping me alive.

The chemo also makes it almost impossible to eat even the smallest morsel. The new tumor isn't helping either. Sometimes, mostly during non-chemo weeks, I can get a few bites down, but it's hardly eating. Man, I miss food. I think I'll stop writing now. I'm rambling, and it's not making me any less hungry.

 

Stuck in the Suck

Hey folks. I know it's been some time since I've written anything on my blog. I suppose cancer has become a bit monotonous, and writing about it doesn't seem to be as crucial. I almost dread it. How many times can I write about the pain, the throwing up, chemo, feeding tubes, trips to the hospital, not being able to eat, x-rays, blood-tests, etc. without boring and depressing both me and my readers?

Fighting

I read in a few past posts that I didn' t remember much of went on, and that it was due to all the painkillers and the shock of finding out and accepting that I was ill. But there was more to it: I was(am) a fighter. I was told from the very start of my treatment that my job now was to fight the cancer. It sounded like I was joining the army and I had a special mission. I was to focus on this fight and not much more. It wasn't easy on relationships, but I had a mission. I was, I am a fighter.

Been Too Long

Hi all. The last time you heard from me was back in September when I was admitted to the hospital. I was going to start blogging again, but I didn't. I don't usually like excuses, but I do have a good one. Besides the cancer. Only a few weeks after being released from the hospital, I was readmitted for the same infection I had before. It just wouldn't go away. They told me it was a bad one. Clostridium Difficile. C-diff for short. Sounds like a rapper.

The Battle Continues

Jonathan's Cancer, here. Since Jonathan is back in the hospital, I thought I'd take advantage of his absence, and share some more photos. Check out this pic of me battling the KEEMO. I'm really kicking ass in this shot, even thought it looks likes I'm running away. I'm just posing for the camera. Enjoy.

A Coke and a Smile

I was recently readmitted to the hospital for a week or so. My counts were down and I had developed multiple infections. I hadn't been back there in a while, and I have to admit this time I sort of liked it.

Two years - No food (Complications)

When we last left our heroic patient, he was sent home from the hospital. And despite the fact that I seemed out of my mind, overall I was okay from the surgery. Then I started radiation. For twenty-eight days, five days a week I would go for out-patient radiation treatment.

Welcome Home

My memory of coming home is very dreamlike. I didn't feel a lot of pain. My new little stomach worked and I could eat for real. Steak, Chinese, pasta -- I couldn't eat very much at a time, but I could have several smaller meals which was just fine with me. I was on some very strong pain killers including fentanyl and methadone. It turns out, I found out later, that they had some big side effects. They made life livable, but they also made me a bit crazy.  I remember none of this, but according to my wife (who had just given birth a few weeks earlier) I did and said some bizarre things. I became a bit of a conspiracy nut, pointing what's really going on here (?). I thought I was Stalin. I also started acting like John Wayne and begged for a cowboy hat. I did write a nice song with my son:

Friends help friends
Put their pacifiers in their mouths
Friends help friends
And that's what it's all about

I was happy I remembered the song. The rest of it -- oh, well. Things seemed to be progressing pretty well for a while. Then I started radiation.
     

Let's Get Out Of The Hospital Already

Hey, blog readers. Jonathan's Cancer here, filling in for Jonathan who spent all last night running back and forth from his bed to the bathroom. Man, even I felt bad for him for a second or two.

Post-Op and Other Thoughts

Before I continue with my exciting cancer adventures, I want to note a few things. One, chemo is definitely having an effect on my ability to consistently keep up this blog. When I started, I was writing at least two or three posts a week. After this last treatment, I found myself unable to get out of bed -- forget sit at a keyboard and write. Also, the days off made me think about whether or not I want to relive these moments again through writing this blog. We'll see.

Cancer Photo Sharing Time

Hey.  Jonathan's Cancer here. Jonathan is too sick to make it out of bed today, so I thought it might be a nice opportunity for me to share. Also, I know Jonathan thought these photos were in somewhat bad taste, and could be viewed as hubris, or laughing at the gods, or something weird like that. I wasn't really listening. Anyway, I thought maybe if you get to know me a little, you'll see that I'm not such a bad guy. In many ways, I'm just like you.

 

This is me, Jonathan's Cancer, at the 2010 Annual Esophageal Cancer Convention at the Anatomy Country Club. That's my uncle, Susan's Cancer. I have a feeling he's gonna beat her Keemo and kill her. He's a great guy. You can see where I get my tumor.                                                        

The Surgery

My son was born on September 23rd, 2009. Six weeks later and after about four months of chemotherapy, the doctors decided the tumor had shrunk down enough, and that it was time to go ahead with the surgery.

Chemo Brain

I was supposed to start writing about the surgery, and I will, but I just came from week one of my second round of chemotherapy. I sat for four hours today, and was infused intravenously through the port in my chest with a cocktail of anti-nausea medicine followed by two types of cancer drugs.

Moving On

You ever feel like the world is passing you by? Like everybody else is moving forward, and you're somehow stuck in place. That's how I feel. I don't leave the house much, and so even a look out the window can make it feel like everybody's in motion and I'm frozen in time.

Father and Son

This is not the way I pictured fatherhood. I was determined to be a good dad -- be there for my son, teach him, learn from him, support him, take care of him, etc. That's not how it turned out. Despite my best intentions and efforts, I am not the great father I'd hope I'd be. Cancer has played a large role in this. Due to my illness and the chemotherapy treatments, I can't leave the house much. I don't move very well. I'm too weak sometimes to even lift him up.

Chemo

I thought I knew a lot going into chemotherapy. I'd heard and read about the nausea, the loss of appetite, the hair falling out, all of it, but I really had no idea what I was getting into. Looking back, it didn't matter that much. My philosophy became, "Just do it.", "Survive." Whatever the doctors told me to do, that's what I did.

KEEMO

Keemo. I'm sure Jonathan is going to tell you some sob story about the pain, discomfort, and torture he endured during his treatment, and blah, blah, blah. But, don't think for a minute that the Keemo is any picnic for me and my kind. That first treatment wave -- there's nothing more terrifying.

Second Opinions

I'm beginning to realize that Cancer is a better narrator than I am. He's more exciting, he tells jokes, he's self confident, charismatic, and says pretty much whatever he likes. I, on the other hand, am supposed to dutifully tell the story of my disease and communicate the degree to which it's devastated our lives.  I knew I was in for a tough battle with Cancer, but I never imagined we were going to be judged against each other on likability.  Blogging is strange. Anyway...

The Little Things

Last night, I taped up all my tubes and connectors, and went out with my wife to our friend's wedding. It took a lot of strength, a pain killer or two, and more preparation than I thought. But, it had to be done. I've lost a good amount of weight, so I had to have a suit of mine brought in (there was no way I could survive shopping for a suit), and I needed to buy a new shirt a whole neck size smaller.

Live every day like it were you're last

Some of the stupidest advice ever. "Live everyday like it were your last." It sounds like the right idea if you have a terminal illness or even if you don't. Who doesn't want to live their life to the fullest?  And it's great if you can pull it off. But what does that really mean? Life has a lot of waiting. At Starbucks, the ATM machine, whatever.

Jonathan's Story - The Beginning

JONATHAN:  Hello. My name is Jonathan. About 2 years ago, during the seventh month of my wife's pregnancy with our first child, I was diagnosed with esophageal cancer. Needless to say, instantly, everything in our lives changed. In a matter of seconds, we went from expecting parents to expecting one of us to die.

Day Two

Jonathan's Cancer here. My plan has hit a few bumps, but I think we're getting back on track. It took forever to get Jonathan out of bed and seated. First he had to disconnect from all these feeding tubes and IVs, then he fell back asleep. I finally had to engineer a gentle little fall out of bed to wake him up. Don't worry. Jonathan's fine. He falls down and out of bed all the time.

Welcome

Hi.  I'm Jonathan's cancer.  Jonathan was supposed to start this blog something like a year ago, but he's -- well, to be honest, he's scared. I guess I can't blame him, sort of. Just mentioning my name, Cancer, is scary to people in general.  Jonathan has been cut up, poked by needles, poisoned, zapped with radiation, and been subjected to more endoscopies and procedures and complications than anyone I know. But still, I was like, this shit has to stop. This has to be written down. My legacy can't go undocumented.  Jonathan wanted to write too, and maybe he had different motivations than I did, but I needed him.  Cancer doesn't type. But, Jonathan kept whining about being too sick or too tired or he didn't feel like it. Anyway, long story short, fully knowing Jonathan's desire to write a blog as well, I agreed to step up and help, be his writing partner so to speak... If he named the blog after me. First part of the deal, done, but I still have doubts about him. To make it easy,  I said I'd start it off, and he could then just step in and follow my lead. This is our first post. We'll see.