This has been a day of ups and downs. I spent most of the morning extremely frustrated – in case you couldn’t tell by the Quick Hit: Word of the Day entry from earlier – by various care providers around town. Let me walk you through my morning.
So my alarm went off at 8:15 am. I have precious few days left to sleep that late, so it’s not entirely a bad thing. I should probably start stepping myself backwards so that the alarm doesn’t kill me on Monday morning. To continue, alarm goes off, and I get up. As I am cleaning the inner cannula freshly removed from my trach tube, there is an expected knock at the front door; it is the home health care nurse who has come to collect a urine sample. Apparently, the repeated placement and removal of catheters in the hospital had left me with a urinary tract infection (on a side note, if you ever have the joy of being cathed by a trainee as a more experienced nurse supervises, threaten to kill them both if they don’t switch positions; just trust me on this one). The sample collected is to be tested to verify that the UTI has disappeared.
Following that brief encounter, I got cleaned up and prepared to go to my physical therapist for the first time. I followed the directions given to me by the therapist when I spoke to her earlier this week. I was to arrive around 11; and, contrary to my habit, I was five minutes early. They were expecting me, which seemed natural at the time, and I commenced the dutiful filling out of the same paperwork that I have completed at every office I have visited in the past two months. I don’t know about you, but if one consequence of the drive to put medical records in an online database is that all this redundancy from office to office is eliminated, I’m all for it. After a few minutes wait, I was greeted by a therapist and was surprised that it was not the one with whom I spoke. We ventured to a treatment room and began the intake interview – the same intake interview that I had conducted over the phone on Monday or Tuesday. After the interview, the therapist went for reinforcements and brought her boss into the room. They explained that I should really be seeing a different therapist. You want to guess which one? If you guessed “the one I already spent half an hour talking to on the phone,” then you win the kewpie doll. I explained that I had been under the impression that she was the therapist I had thought that I would be seeing today. They were puzzled by this possibility since said therapist doesn’t even work in the office to which she herself gave me directions. Yes, you read that correctly. She has her own office about ten minutes away. The two of them then began to ask questions like, “When do you want to start treatment?” and “Do you want the treatment to be here or closer to your office?” I – as politely as possible (which, honestly, wasn’t very at this point) – reminded them that I still had no idea what treatment entailed, how much time would be required per session, and with whom I would be meeting; it seemed to me that I didn’t have sufficient information to address their questions. They agreed. They then explained that radiation treatment was a counter-indication for physical therapy, since, during radiation, the muscles should be allowed to rest as much as possible. Why, then, had they asked me about treatment when they themselves didn’t think I should be commencing it yet? You begin, dear reader, to understand my vexation at humanity today, I hope. So, I left their office with no plans to begin physical therapy until I was finished with radiation treatments, and with the understanding that it would be conducted by the therapist with whom I spoke earlier this week.
Fast forward about two hours. I get a phone call from yet another therapist. He is the husband of the therapist with whom I spoke several days ago; yes, it is a husband-wife shared practice. He says that he wishes to see me, that he routinely treats patients who are undergoing radiation therapy and chemotherapy, and that it is important for my health and recovery that we meet as soon as possible. So, if I feel up to it after my first chemotherapy treatment tomorrow morning, I get to go meet him. Fortunately, his office is one block from my chemotherapy clinic.
You probably noticed that I didn’t use any names in the past couple of paragraphs. Please do not misconstrue that decision as an altruistic one to shield a particular group of physical therapists from negative advertising. It was simply a writing ploy, my own attempt to convey my feelings of confusion from this morning.
Remember the two hours we skipped? Let us briefly return to those. Upon leaving the physical therapy clinic, I journeyed to my radiation therapist’s office. I was scheduled for a CT scan. I had spoken with someone from that office yesterday; she informed me then that I was scheduled for the procedure at 11 o’clock next Tuesday. I assured her that such timing was out of the question, since I, having once again joined the ranks of productive members of society, would be sitting at my desk contemplating something inestimably interesting. She told me to come in today – if possible before noon – and that they would fit me in. As I arrive, none of the staff on duty have any idea that I am to be there. They assure me that I am not due in until next week. I share with them the conversation from yesterday, but, as I cannot remember the name of the staff member with whom I spoke, they begin a crusade of verification during which they attempt to speak with as many staff members as possible to determine just who it was who told me to come in today.
So I wait. And wait. And wait. Eventually, I am led to the imaging center and am prepared for the CT. This was not my first experience with a CT scan; however, it was wholly different from my previous adventures in diagnostic imaging. During my last event, there was an IV, a couple of injections, and the scan took about three minutes. Today, no IV (good), no injections (good), but my wrists were bound so that I couldn’t move (bad), and then this thing was placed over me:
Let me explain. This is a netting that begin wet, felt semi-gelatinous, and was all around creepy. The shell that frames it was basically bolted to the table on which I was laying, and this sloppy ooze was fitted over me. Holes were cut in it for my trach tube and my mouth. The next bonus was that a Styrofoam-esqe brick was inserted through the mouth hole and wedged between my teeth and tongue. Anyone ever sucked on a doorstop? Well, I have. I would not recommend it. At all.
So, as the gelatinous ooze dried into form, the scan commenced. And continued. For more than ten minutes. I am not normal prone to claustrophobia. I have been known to sleep in my closet when a migraine hits. I believe that it was the feeling of confinement that triggered it – bound wrists, head and shoulders bolted to the table, not able to breathe comfortably. It was in this moment that I remembered my Herbert. For all the non-science fiction geeks out there, that would be Frank Herbert, author of the Dune series (arguably the greatest sci-fi series ever written – though fans of Asimov’s Foundation Series can make one hell of a good case):
I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.
- Bene Gesserit Litany Against Fear
Always good to have a mantra handy. So I ran the Bene Gesserit Litany Against Fear through my head for the duration of the procedure. And then it was over. A few last minute details, I snapped the picture above with my cell phone (and yes, that joyful thing – which now perfectly contours my body – will be used in all my radiation treatments), and then I got out of there.
Don’t get me wrong; I am glad that all of this detailed work is available to patients of radiation therapy. My only question is this, “Can’t you warn a brother first? Would that be too much to ask?” I’m just saying, a little foreknowledge goes a long, long way.
So, I, rather annoyed with humanity, returned home. Where I hid. In a dimly lit bedroom. And watched more episodes of Carnivàle. Great show, never seem it before; it came highly recommended. And I wrote the earlier posts from the day. And I assembled a desk (which was a fantastic bargain) that will give me a dedicated workspace (thank you, darling) in the bedroom. I think she’s tired of me bringing my laptop to bed. And this is a hint. So the afternoon and evening have worked out pretty well. They were the ups that I mentioned at the beginning. And it’s always good to end on the ups.
Now, I must go inject dinner directly into my stomach. I hope you are well, dear reader. Thank you for joining me on this adventure.
Until next time, take care of each other.
A Salaam ‘Alaykum
