4 weeks after treatment

It's been four weeks of recovery now and there is not much to write about.  I am experiencing the same symptoms as the first day after treatment ended. Low energy and fatigue, mouth sores and throat pain are still the main obstacles. I'm just beginning to eat a little more though it depends on the day.  The best meal I've had in months was on Thanksgiving. I had a great day that day and felt like my old self.  On Friday morning I had to go to the U of C for a CT Scan.  I find out the results tomorrow (Tuesday) when I meet with my ENT doctor. My hair is growing back. Karla and the kids love to rub their hands on my fuzzy head. I had to shave the top part of my face. The area exposed to the radiation still will not grow hair.

Post Treatment

I am now officially in the post treatment recovery stage and I had to add a few more fish.  They can now be symbolic of this recovery stage. The time when my body rejuvenates and good cells reproduce.  I'm still quite busy with my regimen. Even though I no longer have chemo and radiation treatments, I am still giving myself two units of IV fluids a day, two shots, quite a few pills, skin care on my neck and shoulders, frequent mouth washes and trying to also eat a couple of meals a day. Other than that, it seems all I do is sleep.  My body must really need the rest. I'm not discouraged. I've been told to expect the ups and downs. The recovery can be like a roller coaster and I've always known that things must get worse before they get better. 

End of Treatment

I completed the inpatient part of the treatment on Friday and finally came home to a small welcoming party ready to celebrate the Halloween weekend. I did (for a very short moment) feel liberated knowing I would not have to return to the hospital to pump any more toxins into my body and not have to undergo any more radiation treatments. Everyone was congratulating me, patting me on the back as if I accomplished a great feat. I suppose what I have been through is significant and I understand why I am being congratulated. The fact is, I am having one of the toughest weeks yet of the treatment and I do not feel like it is over. Everything that was done to me in the hospital is now setting in. Eating and drinking are still the two biggest challenges I have. As painful as it is, I have accomplished the goal of not getting a feeding tube and I am maintaining my weight and for that I am very proud.

It is now Friday morning and up until now I have slept most of the week away. I'm waiting to see small signs of recovery whatever they may be. It seems like long ago since I've had to shave. I had an appetite on Monday night and ate some pizza and blueberry muffins. They actually tasted pretty good! THAT is a small sign of recovery. On Tuesday, I did a little (very little) yard work. Perhaps another sign that I am getting stronger. On Wednesday and Thursday I slept most of the day away. In between naps I manage to play a little guitar. Of course, no singing yet. My voice is still very raspy and it hurts to talk a lot. But, gradually, I can tell that it's improving.

So, what's next?  Well, every week I will return to the University of Chicago for blood work so we can monitor my progress.  The day after Thanksgiving, I have an appointment scheduled for a CT scan of my head and neck to see if any signs of the lymph node remain. As of now, I can still feel a small mass in my neck which is not uncommon. Usually, it is dead scar tissue. However, in some cases, cancer may still be present. So, after the CT scan in November, I'll will have a PET scan in December. This scan along with the CT scan will help my team of doctors determine if I should have neck surgery to remove what is left. The team consists of the ENT, the Oncologist and the Radiologist. I have heard that it is likely that I will be having the surgery. I still have not given up hope that I can somehow avoid having this additional surgery (set back), but I can see why people faced with the decision about whether or not to have it, go ahead and have it done.
Peace of mind.