Good afternoon, dear reader. First, let me pray your forgiveness for my long absence. Upon my last appearance, I had the best of intentions to return to writing faithfully and regularly. However, the side effects of which I briefly wrote have continued and are making even the most basic tasks overwhelming at times.
Let me begin by recalling for you the major events of the past few weeks.
I have finished my chemotherapy sessions; I have one appointment remaining with my chemotherapy oncologist remaining – scheduled for next Tuesday – during which I assume we will discuss the strategy for recurring evaluations. It is my assumption that I’ll be required to get a CT scan or PET scan every six months or so, but that is pure speculation on my part.
I have one week of radiation therapy remaining. Actually, I have five sessions remaining; so, assuming that all goes as planned and there are no interruptions, I will finish with radiation therapy on Friday. I have definitely grown to respect my radiation oncologist a great deal. In addition to being a most competent and insightful practitioner of his craft, he is also one of those physicians who refuses to treat patients as though they are incapable of understanding what is happening to their bodies. When we discuss my condition, therapy, or prognosis, he does not shy away from technical explanations of whatever is occurring; in the event a term is unfamiliar to me, he defines it and then continues his explanation. It’s very refreshing to be treated by a doctor who doesn’t treat you like an invalid.
Given that he is such a physician, I have been repeatedly surprised by how frequently he has been surprised by aspects of my convalescence. The most recent of these surprises was on Wednesday of last week. While performing his weekly examination, he made the following observation, “You have more tongue than you did a month ago.” He reminded me of a previous conversation we had in which he informed me that there are two parts of the human body that are capable of regeneration after injury – the liver and the tongue. I had been aware that this was the case with the liver, but I had never heard that about the tongue. So as it turns out, my tongue has begun regenerating, and it is doing so at a faster rate than my doctor has seen before. I am not allowing myself to get my hopes up, but on some level I do recognize that it would be fantastic to regrow my tongue completely over the next five to ten years.
As for the less pleasant parts of the past few weeks, the major contributing factor is the side effects hell in which I continue to languish. I am anxiously anticipating the day when the pain caused by my treatments begins to fade, but that day has not yet come. My pain levels have continued to increase over the past month to the point that I have been given more and stronger pain medications. I am currently wearing a Fentanyl patch that delivers 75 mcg/hr and taking 1 mL of liquid morphine sulfate every two to three hours. In combination, these do help ease the pain, but they also greatly contribute to fatigue and the inability to concentrate. Further, I am not looking forward to the weaning process for either of these medications. Though I do look forward to the time when I no longer need them, stepping them down gradually will probably be a frustrating experience. However, I suppose such an experience will be better than a heart attack.
Other serious complications include a very annoying combination of congestion, infection, and cough that will not go away. For the past week, I have felt a constant lump in my throat just above my trach tube. For the same duration, I have been coughing almost uncontrollably at times; these coughs often produce wads of phlegm that could be mistaken for small woodland creatures without too much difficulty. I pestered the clinic staff about the situation until they agreed to run a culture – actually, they first asked if I could produce a sample for them to test; I simply removed the capped cannula from my trach tube (in doing so, allowing direct access to my lungs through the hole in my throat) and shot a small squirrel into the specimen cup they proffered – on a sample; when the results finally came back, I was told that “they [were] ok.” I asked for clarification on the matter and received none; so I’ll wait until Monday and then ask the doctor. Until then, since the sample I produced at the clinic was not my best work by far, I have taken it upon myself to gather other key samples through the weekend and take them in with me as evidence of the truly outstanding nature of this congestion.
Of course I agree with what you’re thinking right now. It is indeed disgusting for a patient to collect his own phlegm samples and store them in Ziploc bags; but what choice do I have, really? While there was a hint of the green color that so often indicates infection in the sample I provided for analysis, that one sample truly did fall short of the multicolored, variably textured offerings that I spend most nights repeatedly coughing up.
OK, fine, enough of that. I’ll move on to something else.
In other side effects, my neck is rather displeased that treatment is still underway. The skin is quite tender and mottled from radiation burns. Also, the trach collar has begun to chafe. I’ve found a relatively effective combination of ointments that help to ameliorate the condition, but nothing will be completely effective until I stop sticking my head in a microwave every morning.
But all of these side effects I’ve described are physical. There are definitely mental/emotional ones as well. I’ve been (increasingly) depressed over the past few weeks because of how difficult it is for me to be out and about. I know that Adrianne would like me to be more social – and I have encouraged her to remain social and go out without me (because, honestly, I’m basically just sleeping anyway) – since she often feels guilty when she goes out without me; and, truth be told, I would like to be more social myself. However, right now I’m no fun to be near. Between the violent coughing, the weakness, the fatigue, and the constant ache, it requires so much effort to be pleasant and social that I can’t maintain the facade as well as I’d like. So I don’t go out. Which, in the end, has gotten me down. I’ve occupied my time with all manner of lazy pursuits – naps, television, a wide variety of films – but, as you may have noticed, dear reader, I have not of late even had the emotional energy to write. I have found some small modicum of satisfaction in my continued efforts to be productive at work, but by the time the workday is over, I am usually in need of a nap. When I wake, I “eat” dinner and take some more medication – which makes me sleepy – and resume my laziness. As you may have noticed by my tone, I feel rather guilty for it, too.
I have tried on some level to convince myself that I have nothing for which to feel guilty, that this recovery process entitles me to a few weeks of laziness and antisocial behavior; but I miss being social. I miss spending time with family and friends.
At this point, I feel as though I am beginning to babble. So, I shall sign off for now. I promise to try to write again tomorrow. Any words of encouragement would be most dearly appreciated.
Until then, my friends, take care of each other.
Namaste.
