Good day, dear reader. As I write this, I am amazed by the sense of calm that now surrounds me. I have been blanketed in it for much of the weekend. You see, it started on Friday, which was a very good day.
On Friday morning, I enjoyed a moment of quiet victory as I stepped out of the radiation clinic and into the sunshine as a free man. I carried with me a reminder of the long journey I had just completed; the frame that had served to bind me to the table felt incredibly light in my hand. The experience was surreal and overwhelming. The frame now sits quietly in the corner of my bedroom. I think I shall mount it on the wall in my office; it shall be my trophy of a successful hunt for cancerous microbes.
The calm of this weekend comes, of course, on the heels of a very difficult week. On Tuesday, I began coughing up blood. I noticed this as I was cleaning up after another mucus monkey attack; my first thought was that the mucus monkey army was now emerging from my trach tube armed or having undergone some coming-of-age ritual, since the mucus was now tinged with red. Of course, it was 2:30 am when I made this discovery, and I remember thinking, “Why worry now? It’s not like I don’t have an appointment to see a physician in five hours anyway. . .” As it turns out, the doctor was not at all worried. He said that the radiation has caused extensive swelling and irritation in and around my trachea, and that the tracheostomy tube is likely scratching against the already irritated inner lining of my trachea. This contact draws a small amount of blood, which has a ready made escape route. The doctor indicated that this should dissipate after the treatments end and the swelling fades. I do hope this happens sooner rather than later, I must admit, as I grow increasingly tired of the swollen throat, neck, and everything else.
The swelling grew significantly worse this week, as did the radiation burns across the skin of my neck. When the radiation technicians refocused my treatment points for the final week of treatment, they apparently used the same overall amount of radiation on a smaller area, so in that area the side effects intensified. I have, for the moment, given up all oral consumption – not just food, but liquids as well. Swallowing is simply too painful at the moment. And even water tastes bad now (very briny, if you’re curious). I will rest for a week or so, then try again. The radiation burns now cover approximately seventy percent of the circumference of my neck. Even worse, the burns make the flesh stick to the collar for my trach tube. So whenever I readjust the collar, I have this tendency to flay myself lightly. Truly a wonderful experience..
I have been given medication to stifle the cough at night. This is beneficial for a number of reasons. First, the less I cough, the less mucus I have to deal with. I have grown accustomed to covering my trach rather than my mouth when I cough (I wonder if that habit will persist even after the tube is removed) so as to wrangle immediately any of the mucus monkeys that would prefer to hide amongst the bedclothes. There are few sensations quite as revolting as rolling over in bed and your hand/ear/nose/shoulder lands softly in a cold pool of goo.
The second benefit from the medication is a reduction in side effects of the coughing. On the bad nights, when several extended coughing fits hit, my throat swells. Not too much, overall, but when one is wearing a collar even the slightest swelling can make the collar restrictive. Add to that the radiation burns and you’ve got a serious party.
I have received many questions about what will happen next, what the next stage is. To be honest, I don’t really know yet. I have an appointment this week for an injection to help me recover from the mild anemia that I developed during treatment. At the end of the month, I have a follow-up appointment with my radiation oncologist. Next month I have a CT scan scheduled, along with a consultation a few days later to read the results. At some point, I will have an appointment with the surgical oncologist at Vanderbilt who performed my surgery. Apparently, the final decision as to the timeline for removal of my trach tube is his. I have every intention of convincing him that NOW is a fantastic time. I have heard that there is a minimum three week waiting period following the end of radiation and chemotherapy, but that that period is designed to guarantee that patients are capable of swallowing. While it may be painful, I believe I can pass this test. I’ll down a whole bottle of water in front of the man (a feat which, I can assure you, would be quite painful) if it will help my case.
I hope you are well, dear reader. I apologize, but I must now sign off. Would it surprise you to know that writing even a short entry such as this one can be incredibly taxing? At this point, I need to sleep.
Until next time, dear friends, take care of each other.
Mast Qalandar.
