Soooo....I Have Cancer

Recovery from my feeding tube procedure last week Wednesday is going well I guess. Thursday and Friday were relatively tough pain-wise. I suppose pain might not be the best word. It was more sore than painful. I never realized how often we use our abdominal muscles during everyday tasks. Breathing, yawning, coughing, sneezing, laughing, crying, walking, getting in and out of a chair, showering, bathroom activities, etc.....and that's probably only a short list of things that aggravated the surgery site. The good news is that I have been essentially pain-free for the last 2-3 days with the help of 800 mg ibuprofen 4 times a day. There is a bit of oozing/draining occurring but we've been told that this is not uncommon but need to keep an eye on it to make sure it doesn't get worse.

Yesterday I learned that I can "flush" my feeding tube all by myself. This is something that needs to be done at least once each day whether I am using my tube for feedings or not. I am not sure if I will be able to actually feed myself - if needed, of course - but I feel like I should at least try before the time comes. I know she would do it in a heartbeat but it would be a royal PITA for my wife to come home once or twice a day to feed me. If I need to have all of my food through this tube it will be 6-7 cans per day (something like 2300 calories). Based on the "aftermath" of my previous tube feedings it seems as though spreading these throughout the day as much as possible will be the best way to go.

Last week Friday I had an appointment to get my mask made for my radiation treatments. I was still quite sore from the feeding tube surgery so this was not a very fun appointment from that standpoint. The table I had to lay on was about as soft as our driveway. I rested my neck on this mold thing that forced my chin to point to the sky. They also put this board under my feet with 2 of these metal-springy-rope-type things attached to 2 handles. The idea for this is to bring my shoulders down as far as possible so the radiation "beams" don't hit my shoulders on their way into my head and neck. My doctor said that my neck is nice and long so it probably wasn't as critical to get me into this device but we decided to do it just to be safe. He also needed to find a way to push my tongue down and keep it down during my treatments. The solution to this was a 60 mL syringe (sans plunger) that's ~1" in diameter. This will be put in my mouth before each treatment. He looked at my tongue while the syringe was in place and said it looked "beautiful." By keeping my tongue depressed he is hoping that the roof of my mouth will be spared from a bulk of the radiation.

Now comes the mask-making. While all of the above activities were going on my mask mold was taking a bath in some pretty hot water. When the time came they took it out of the water and placed it over my head, neck, and shoulders. It was hot. Not burning hot, but still pretty hot. They placed the syringe tube in my mouth while the plastic was still very pliable. Then my face was covered in some towels that were wet with lukewarm water to help it cool. The holes in the mesh appeared to be a bit smaller than the diameter of a pencil so I could still easily see through the mask and breathe through my nose. However, it found it best to keep my eyes closed. The pain from my feeding tube was enough to take my mind off the mask hardening and shrinking around my face but closing my eyes and going to my happy place sort of took my mind of both of those things for the time being.

With the mask completely hardened they literally bolted it to the table. That was pretty nerve-wracking but I didn't feel trapped or claustrophobic at all. It was pretty weird not being able to move at all though. After I was bolted in they started some scans. They lasted for what felt like about 5 minutes although I really have no idea how long I was in there. Oh, I also got my very first tattoo, too! A small, red dot about 3 or 4" above my sternum. They will use this as an additional alignment point (there are at least 3 or 4 on my mask) before they start each treatment.

When all of that was said and done we met with my doctor for a few minutes to talk about some questions we had. We learned that I will receive anywhere from 30-33 treatments in total. He also explained how this particular form of radiation treatment works. He used the following analogy: Imagine 20 people standing in a circle in a room. Each of them have a LED pointer light and are told to point their light at an "X" in the middle of the room. There will be one relatively large and intense dot in the middle of the room that gradually - but quickly - reduces in intensity as you move away from the "X". The outer edges of the areas he intends to treat will be monitored to see how much radiation they have received over time. Once those edges have received his targeted dose he can be certain that the other areas - the more nasty areas - have received much more than that (see LED light description above). I will likely start treatment by the 26th or 27th of this month. They said it might be sooner than that - it all depends on how long it takes them to review the scans and come up with a treatment plan.

On Saturday my wife and I gathered with my mom's side of the family celebrate and remember my Grandma. We had a very nice private room at her favorite restaurant. It was quite the emotional couple of hours to say the least. I don't think I have ever seen my Grandpa cry before Saturday. It was tough to see. My aunt and my mom each did a few readings and then my cousin's wife sang an outrageously beautiful version of the Lord's Prayer. There's no doubt it's going to be hard for my Grandpa for a while. I don't know that you ever get over losing someone that you've been married to for 62 years.

Other than that I've just been hanging out at home doing as little as possible to let myself continue to heal. I finally got a bit stir crazy for the very first time yesterday. I got out of my chair a few times just for the sake of getting up. My legs appreciated it a great deal but my abdomen was telling another story. I'm also trying to eat as much as possible until I start radiation. I've been told that "bad calories" do not exist for me anymore. Well, at least not until I'm fully recovered from treatment.

Thanks again for taking time to read this longer-than-anticipated post.

Take Care,
Josh