Food in my Future

Sorry about the length of time since the last post but not much has been going on. Progress has been so slow due to lingering radiation reactions that it's hard to tell from day to day if I'm improving. But based on how I feel now and how much mucous and blood I'm spitting up compared to two weeks ago, I have improved. The big deal today was I visited the surgeon who did the throat and neck surgeries for a follow-up. He liked my progress, said the swelling is minimal and I could try to start to eat some soft foods instead of taking 100% of my food through the PEG tube. I haven't tried eating anything for the last couple of months but the doctor said you have to keep swallowing to keep the throat open - to stretch it, otherwise due to the stress from radiation, it tightens. So I'm going to have to start slow and work up to eating solid food. Once I'm able to eat full meals, I will have to depend on sustaining my weight through solid food for two weeks without using the tube before they will remove it. At that point, I should be able to get back to a more normal life. Anita asked the doctor if I had to go in for an operation to remove it, just like it was put in. He said, "No, I just pull it out right here in the office." OUCH!

Waiting for the Other Shoe to Drop

Well, every doctor and nurse that spoke to me said that the symptoms would get worse during the first 2-3 weeks after my treatments had ended. So far, this hasn't been the case. Symptoms have changed slightly, some are worse, some are better. All are annoying. (excuse me, I gotta go spit) Mucous, which I refer to as slime, gathers in my throat and makes it feel pretty tight. I'm still unable to eat and using the PEG tube has become a monotonous, slime-producing drudgery. But I am over one week beyond my last treatment, so I can't imagine things turning sour at this point. I'm basically just hanging in there until the symptoms start to fade. If I can evacuate most of the slime, my voice actually sounds more normal for the first time in four months.

On a lighter note, the lost hair on the back of my neck will grow back but the missing whiskers will not. No big deal - shaving's a bother. However, if I try to grow a beard I think I'll look like I have crop circles. I have noticed that the burnt skin on my neck is starting to peel off, like the doctor said it would. Lovely. They describe it as sunburn; it's more like a tan that has dried out the skin and it's now starting to flake off. There's no heat to it and no burning.  It's like smoked meat instead of skin, not a red sunburn.

I haven't been able to eat real food for weeks, and for months now food has tasted terrible even when I did try to eat it. I'm never hungry so therefore I never have the desire to eat, but on Wednesday night I dreamed that I was eating a roast beef dinner, and loving it! So at least subconsciously I may be making some progress. I almost woke up hungry. I've lost 30 pounds over the past 4 months.  I haven't been at this weight since I was in high school.

I'm getting out every other day or so to mow the lawn or do other light yard work, or to run a few errands. But I don't have much stamina; I usually have to take a nap after doing anything even slightly strenuous. I think real progress will start to be made when I am able to eat again. I think I see the light at the end of the tunnel - I just hope it's not the headlight of an oncoming train.

Recovery Road

I finished my last treatment today - boy, am I glad! I haven't been feeling well lately, in fact the last 2 nights I've been throwing up. They actually gave me a little diploma for finishing. The doctor I spoke to today informed me that the next 2-3 weeks I'll be feeling worse. It apparently takes 7-8 days after a treatment before you start to feel the effects of it. So it is what it is - I have to see how I feel. The radiation is done and it's just going to take its course. I can't eat anything now, I'm strictly on canned supplements through the PEG tube. Talking is extremely difficult and painful if I talk too much. But I'm on the road to recovery, so mentally I feel pretty good.

Five days to go, symptoms really SUCK

Symptoms increasing with the end in sight. I feel like the guy on the ship who's been given 30 lashes with 25 down and only 5 to go. The problem is, the damage from the first 25 makes the last 5 pretty painful. But considering some of the folks I've seen going through much worse symptoms than me and still able to continue on, I would have no justification for not doing the same.

The worse symptom seems to be the tightness and soreness in the throat, along with very thick saliva that is hard to get up or down. Some other nuisances are nausea, hair loss, fading voice and fatigue. So far though, nothing I can't handle. Eating is extremely difficult; in fact, I didn't even eat dinner tonight - just had my applesauce with my other regular meds. Thanks to the PEG tube though, I've gained a pound in the last 2 weeks, so it stopped the constant weight loss at about 26 pounds.

I want to thank all of those folks out there who have sent me emails, snail mail, comments and phone calls. Your support is helping me in more ways than you know. I especially want to thank my wife, Anita, who's been like a rock through all of this. I guess should also thank my first ex-wife, who came to visit us on Monday for dinner. She and Anita hit it off so well I think I'm in trouble. I'm afraid to leave them in a room together alone.

I met with my doctor today. He said I'm actually doing above average... I'd hate to know what below average feels like. He says I shouldn't feel much worse during this next week's treatment, but there's six weeks of recovery after the treatment is over and I can expect my symptoms to get worse during the first two of those weeks. Lovely. Then it's all uphill. Talk to you again soon.

High Anxiety

Not much to report from last week; sessions were fairly normal. The discomfort in the throat increases slightly each day, but nothing to panic about - more like an annoyance than anything else. To combat the pain, I've started to take 5-8 ml of liquid hydrocodone thru my PEG tube twice a day: once in the morning before going to a session and once before dinner, so I can swallow. It tends to deaden the pain and release some of the tightness I feel in my throat when swallowing. I'm eating less and relying more on the cans of nutritional supplement through the PEG tube. I'm up to 3 cans a day.

When the radiation sessions started, I had some anxiety about being able to complete 30 sessions after reading about the side effects of this type of radiation. The most severe side effects could be loss of speech, loss of taste, and believe it or not cancer from the radiation itself. The loss of speech and taste could even be permanent, but it's not likely to happen. Even getting cancer is a remote possibility. Considering the surgeon removed the tumor and the affected lymph nodes, and found no other cancer cells, made the decision to go with radiation a tough one. I decided to trust that he knew best for my particular case and went with the radiation.

I had more anxiety at the beginning than I do now about finishing all 30 sessions. I finished #18 today with just 12 more to go. Provided there's no dramatic increase in pain or symptoms, quitting would be unjustified. Part of the reason I'm doing this blog is to describe what it's like going through this type of cancer and treatment, in the hope that others with the same diagnosis could hear first-hand how I dealt with it. But a good part of the reason I'm doing this blog is that once it gets out there for everyone to read, I'll have to go through to the end no matter how uncomfortable or annoying things get, or I won't be able to face my friends or relatives.

I'm taking this one day at a time, and as long as I'm able to get up and go to my next session, that's what I'm doing.

Unbuttoned

Baylor by 19, and it wasn't that close!

I finally got to talk to my surgeon this morning to discuss my button-popping ways. I suspected they were something put in place to hold something else underneath my abdominal wall. As it turns out, that was the case. During surgery, when they fill your stomach with gas to insert the tube, these buttons are sewn into place to hold the stomach against the abdominal wall for insertion, and as I was hoping they were designed to do their job and then fall out. They were only held in with one dissolvable thread. So now we know who has the buttons - the doctor took my other one. She did explain to me that the parts inside the stomach are also only held by one dissolvable thread; they will naturally go through my system. Holy crap, batman!

I'm fine. I am 50% complete (!!)  on my radiation treatments, and headed into the home stretch. Talk to you all again soon. The Lakers are on ... See ya!!

Button, button, who's got the button?

Hi - Jim here this time. I haven't really had much to say over the past week - every day's pretty much the same. Although last Monday, I really started feeling the effects of the radiation on my throat - it seemed to really tighten up. What bothered me was, I wasn't even one-third of the way done yet and I wasn't supposed to feel the effects until after 2 weeks. So I began thinking, "if I'm feeling it THIS early, what's it going to be like toward the end? Will I be able to eat or talk?" But as the week went on, it didn't seem to get any worse, so I got kinda used to it. The weekend recovery period was a good rest and I was ready for Monday.

However, my throat tightened up after yesterday's treatment. I was experiencing throat pain and tightness again. It was difficult to talk, so I decided it was time to try some of my pain medication. That seemed to ease the pain and loosen the throat, as I expected. So last night, I was feeling pretty confident again.

Then we come to today... For the first time, I took pain medication before going to treatment and that made everything feel much better afterward. I felt so good, in fact, that I thought I'd go out and mow the front lawn. As I started to change to work jeans, a part that was sewed on to me fell off! My feeding tube has an opaque plastic disc covering the insertion point on my stomach. Underneath this disc, there are two "buttons" opposite each other that appear to be sewn into my skin. Well, one of them fell out. Now I have a small hole there. Oops.

I don't know what these buttons do, and no matter how many people we called, they couldn't answer the question either. But I do have an appointment at 9am tomorrow with the doctor that buttoned me up. I'm sure she'll explain everything. Stay tuned. I gotta get back to the women's final game.