Ben vs Cancer

Hey everyone, it's been quite a while since I've written. It's been almost four years since my diagnosis. Since my last entry, I've had two surgeries for hernias, related to the esophagectomy and so on. My daily breakfast now (by choice) is yogurt, cottage cheese, and fruit. Sometimes I'll have a bagel and cream cheese if I'm extra hungry. Sausage egg and cheese sandwiches feel so heavy and terrible. Work is going well, I'm working full-time. It's difficult sometimes, but they're very understanding. I get there when I get there, and if the dumping syndrome (less fun than it sounds) hits, I disappear for a bit, and they tolerate that too. They aparrently like me for my mind, because my physical body is nothing to brag about. I've gained weight, from a low of 135 lbs (I'm 6 feet tall) after my second hernia surgery, I'm up to 173 lbs now. I'm still dealing with the type II diabetes, but so far that's the only thing trying to k...

13 August 2015 July 1, 2015: A supper like any other. A cheeseburger with my wife and four kids. Unlike others though, I couldn’t swallow the cheeseburger. I choked on it, and coughed half of it back up in the sink. My dad, who has Barrett’s Esophagus, said “You’d better get that checked out.” Two weeks later, I had my diagnosis. After I cleaned up from supper, I went upstairs and messaged my doctor asking for an appointment (Hooray for the online patient portal!). The next day I had one for the day after that. I went into the office on Friday morning at 7 (right next door to work, so I wasn’t even late) and he set me up for a barium swallow at the local hospital the next Monday morning. I went to work, asked for the time off, and prepared for my routine exam. Monday came, I did the barium swallow, they could see that I was having trouble right then. By the way, (TMI alert!) you poop out heavy poops for a week after that. Little white things that sink right to the bottom of ...

14 August 2015 July 10: I went in for my upper endoscopy, and possible dilation of the stricture, not a big deal, but it was the first time I had an IV, and the first time I’d had anesthesia. My mother let me know that she often is more sensitive to the anesthesia than they expect, so I let them know that. The anesthesiologist was eccentric (as I expect they all are) but I had complete confidence in him. I asked how long the procedure should take, and they told me the endoscopy would be about 45 minutes, and if they were able to dilate the stricture it would be another 20 minutes. I was looking forward to being able to eat a piece of pizza or a McDonald’s cheeseburger after the procedure. When I woke up, I asked what time it was, and it was only 50 minutes after the procedure had started, so I knew there was no cheeseburger in my future that day. My wife and four kids came in. They had been at the park next door to the hospital for the procedure. The doctor told me that he found...

19 August 2015 Wednesday July 15, 12:30 PM: I had an appointment to go in and discuss the results of the previous Friday’s biopsy results. We arrived half an hour early, then were shown into a small room. They seemed to be busy there, and kept us waiting until more than an hour past my appointment time. My wife looked at me and said “If they’re taking this long, I hope it’s good news.” It wasn’t. He came in and sat down, and said that it was what he feared, and he wouldn’t be able to help me anymore. Not because it was that bad, but it just wasn’t what he did. He wished me luck, and said that he’d make referrals to a thoracic surgeon and the cancer center. I stopped by work after the diagnosis and talked to my supervisor. After that discussion, she had me put into a different role at work, where I wasn’t facing clients, and could answer my phone anytime to help schedule doctor’s appointments. They’ve been great to me there. The next Tuesday I went to see my regular docto...

20 August 2015 There was more that happened between then and now, including an overnight at Maine Medical Center because I couldn’t swallow my own spit after another endoscopy, but I thought it would be good just to catch up and keep things current. I got my radiation schedule today, which starts on Monday, and my last treatment is on my birthday, October 1. I can’t think of a more fitting present. I’m sitting in the waiting room for the oncologist right now to go over the plan for the chemotherapy. I’m not sure what to expect with that yet. I got a phone call earlier regarding paperwork for work, so that can be cleared up. I tried calling back and had to leave a message. I expect they’ll try again during the appointment. I’m feeling tired today, but not as bad as earlier. I was able to force a piece of Little Caesars pizza down with half a gallon of water. It’s been hot lately and I want to shave my hair and beard, but I’d wonder the rest of my life how the chemothe...

21 August 2015 Short post today. They’re starting chemotherapy (paclitaxil and carboplatin) and radiation on Monday morning. A four hour chemotherapy appointment in the morning followed by another half hour radiation appointment in the afternoon. Today though is easy, a trip to Portland to meet the surgeon and get my wedge pillow. I don’t have to fast this time either, so I get a Tim Hortons coffee on the way. I like mini road trips.

23 August 2015 As the title suggests, there’s nothing new here, so if you’re looking for more news, you can go back now. Tomorrow I start the chemotherapy and radiation, and honestly, I’d rather not have to. I’ve been reading the information provided by the doctors, clinical studies, blogs, listening to podcasts (Jesse vs Cancer – not family friendly by any means), and hanging out on some forums, but I still feel like I’m not prepared for this. Despite how many people go through cancer and cancer treatments, it’s a disease that is very isolating. I have no idea what to expect tomorrow, and that’s partly because the treatments are very personalized. Bloodwork is done, and then the drugs are prepared tailored for exactly how you are that day. You may experience neuropathy, you may not. Your hair may fall out, it may not. You may end up with a different color hair after, or curly or straight, or you may not. You could get constipation or diarrhea (but not both) or you may not....

25 August 2015 I had my first  chemotherapy yesterday, 4 hours of being hooked up to an IV was quite enough for one week, thank you. It went well for me though, they gave me an antihistamine, a steroid, an antacid, and an anti-nausea medication, and then the two chemotherapy drugs. When the nurse was hooking those up, she had to wear gloves and a gown. She can’t even touch the stuff, and yet I’m getting two bags of it going into my body. This isn’t something you want to see. After that was done, I had the radiation a couple of hours later. That one I have to do five days a week until October first. So far neither one is too bad. I’m a bit thirsty and tired, but doing okay. Oh, and a bit dizzy, and my feet go a little numb sometimes, but they did that with the diabetes anyway, so who knows. More radiation today, and a cup of coffee with a friend.

26 August 2015 Okay, I’m convinced they’re trying to kill me. Not really, of course, but this is definitely tiring. My stomach feels like when you have bad indigestion, not like acid reflux, but the painful jabbing. I don’t feel up to eating much, or even doing much, but I’m drinking things, and trying to get calories into me. I need to keep my weight up. Yesterday I was down to 181.6. I was 195 in December, got up to 204 in February, and I was 194 when I started this in July. If I lose too much, I’ll end up with a J-tube to get sustenance into me. That bypasses the stomach and is inserted directly into my small intestine and comes with a pump. I’d rather eat on my own, thanks. I’m up doing this right now, and I’ll go walk on the treadmill today too. I need to keep my strength up. This is only the third day of treatment.

2 September 2015  know it’s been a little bit since I’ve posted. Sorry, I’ve been tired. I had my second Chemotherapy treatment on Monday, though they were a bit concerned since my white blood cell count was down to 2 from 5 the week before, but they did it anyway. Next Monday is Labor Day, so they’re waiting until probably Wednesday for my chemo next week, to give me some more time to recover. I handled it well this time too, maybe better than last week. Still have my hair, but I did shave my beard, as it was getting kind of itchy due to the dry skin from the chemo. I’d lost more weight too, dropped to 175.8. They’re talking about a feeding tube (J-tube) if I lose much more, so I’m trying to eat/drink more to keep my weight up. I bought the stuff for a shake and realized we didn’t have a blender, so I posted a plea to Facebook, and a nearby friend came through right away with one (Thanks Shannan and Dave!). Monday during the chemotherapy treatment, I was there for l...

25 September 2015 Don’t worry, it’s not as ominous as it sounds. I have one week left of radiation. I haven’t been writing as much on here, because I haven’t felt up to it at all. You know I’m sick when I won’t sit in front of a computer. I’ve been throwing up 2-3 times a day recently, and have gone down to 164 lbs. Eating hurts, drinking hurts, living hurts, but the narcotics they give me for pain make life tolerable. I can understand why people like them. My white blood cell count has been low the last three weeks, but they did the chemotherapy anyway for two of them. They skipped this week though, so now I’m looking forward to October 14th as hopefully being my last treatment of that. Honestly, I’m sick and exhausted most of the time. I’ve lost muscle mass, appetite, taste, ambition, and just walking downstairs to the living room wears me out. I just keep looking forward though, only one more week of radiation, and I’ll get to feeling better, swallowing better, and ga...

14 October 2015 Today marks one year at my job with athenahealth, but I’m not sure I can count the last two months because I’ve been working on recovering instead. Two and a half more months to go before I go back to work, but at least my radiation and chemotherapy are done. One thing I’ve learned is that though the narcotics (Oxycodone) help with the pain, they also cause nausea. The anti-nausea medication ( Zofran ) they gave me does nothing for the nausea, so I just take nothing, and I can keep things down. Overall, I’ve lost 35 pounds since I started treatments at the end of August, but I’ve started gaining again. Five pounds so far this week. The last couple of weeks I’ve gone back to the Radiation Oncology department to get IV fluids because I was dehydrated. That’s better now too, and I even was able to cancel the appointment I had today for that. I’m starting to feel human again (queue Disney music) and I like it. A lot of the weight I lost was muscle mass. My bicep...

09 November 2015 Next Monday, I head down to Portland to prepare for surgery on Tuesday. A week and a half ago, I visited the surgeon’s office, signed consent forms for the possible contingencies, and went over the procedure. Last week I did some research on the surgery, and the numbers aren’t very encouraging, at least at first. The open style esophagectomy , which they used to do, has a mortality rate of 10% in the first month. Yep, 10% of patients that have this done die soon after. This drops to 5% for the minimally invasive surgery, which I’m having done, and drops further if the surgeon is experienced, which mine is. Also, my age (36) helps a lot. I’m the youngest patient most of the people working in that office have seen. I found out what tubes and so on will be sticking out of me when I wake up (always good to not have that surprise you) and that I should be staying there for 8 days. They did some blood work and an EKG to make sure I was in shape for the surgery as wel...

11 November 2015 This is my last weekend eating for a while. I know, it’s only a week before I get to eat something again, two weeks before soft foods, three weeks before normal foods, and that’s not that long, especially considering what some people go through, but it’s still a bit for my mind to grasp. I was looking over the paperwork again today, and it’s not even as restrictive as I thought. When I’m on clear liquids for the week after I get home, that even includes Cream of Wheat and yogurt. I expect it won’t be the fruity yogurt I normally have, but a smooth plainer yogurt, but that’s still better than I thought. I’m going to also be transitioning this blog to a more normal blog, with subjects other than my cancer. Once you have this disease though, even if it’s clear, you’re still fighting it. Life is different forever. It’s not something that ever goes away, even when it does. My day to day life is changed. I won’t be able to eat the same way, sleep the same way, or loo...