Red Tape

Today is not the best of days to be relaying the latest. My ear/jaw is now officially sore, not quite TMJ but close.  Friend/nurse Leann mentioned otitis externa, basically swimmer’s ear, for which I managed to get a subscription for drops from my GP today.  One dose of 4 drops, if they ever made it through the tiny crack, did nothing much except aggravate me that I didn’t go sooner. It just adds to the  frustration of the piling of up events since last Friday.

As you recall, that was the day my hematologist lamented that I was no longer eligible for funding for Vidaza, which if I didn’t mention before, costs $4500 per round, and it is average to get three or four of them. Not exactly funds we have at our fingertips. On Monday I went for what is called a routine pulmonary test called PFT. I did a lot of huffing and puffing, and before I left I mentioned that my hemoglobin was pretty low, so they might affect the baseline. My next stop was to medical records to find my files and get the copies I needed to send to the clinic in the US. That was a fruitless and potentially costly endeavour, quickly righted by super nurse Lou who responded by day’s end that she would gladly and free of charge get the papers I needed and would have them soon, instead of waiting 2-3 weeks and paying big bucks for some poor schmuck to rifle through reams of files for my request. What a horrible job that must be! I also had bloodwork done that day, and when Lou was reassuring me of the paperwork preparation, she informed me that I was now at my nadir, or lowest point (for anyone who gets what this means, and in Canada the numbers are different than in the US, RBC: 90 (120-160), WBC: 1.4 (3.7-5.1), platelets 50 (150-400) and neutrophils: 0.59 (2-7.5). The latter was the most concerning, as it is directly related to my lack of immunity. Therefore from that point on I am to avoid crowds and sick people. I added to the list on my own (because for some inexplicable reason these measures do not seem to be information given freely  to patients, so lucky that I knew): cheese, mushrooms, sprouts, sugar, caffeine, alcohol, stress and exposure to cold. Not an easy thing in November, which is so fickle with its pendulum swinging from sunny double digit days to blustery icy overcast ones.

While I was laying low, Pete was in Dubai building up a distant plume of rage at the system that had essentially withdrawn necessary treatment from me. One of my errands that Monday at KGH was to connect with Mike the pharmacist who explained the sad situation in a little more detail, and gave me contacts upon whom we could vent. The biggest mystery is why there had been no communication with Toronto, and it was partially solved when Pete wrote that doctor and promptly got an email response that basically boiled down to “WTF?” She said she had not heard from anyone, and was beyond herself with confusion why this was even an issue. She said she would communicate with– well, someone, I guess. I assumed maybe me? Her truncated sentences indicated she had left a message with my doc. Not a word was passed on to me by anyone. I had to call Lou today to find out if anything was resolved, and if I was expected to go in next week for round 2. Apparently, not. There was some  doctoral “discussion” with a third specialist brought in, and the result is we are now focussing on simply the stem cell solution. I need to go in for a CBC on Monday (which I suggested last week and with which Lou agreed, but honestly, why must I be making these moves? Don’t we want to know what the numbers are and how I am doing?) I will also pick up the papers waiting for me– but oh wait, the blood clinic is not OPEN Mondays. So now it must wait till Tuesday. I guess I never went on Mondays. I guess I never went Wednesdays either, because when I went this week it was a madhouse. A MADHOUSE! “Please don’t come in on Wednesdays, it is the busiest day!” Good to know. That means in all these years I’ve gone in, and that is over 6 years, I have purely, by coincidence, never once gone on Mondays or Wednesdays?

Now to my ear. On Wednesday I noticed my right ear was swelling up a little. I dove into some astragalus, used it up, and lots of C and D. But it seemed to keep getting worse. Not obstructing anything, and not affecting my hearing, just pressure and the odd sensation that there is a cotton ball wedged almost completely in there. It took me until today to give up and go to the big guns. So I called the clinic first to find out the proper course of action. My instructions are if I am feverish, I go immediately to emerg and then contact the clinic folks. But technically I do not have a fever, just an inflammation that is bothering me. Shouldn’t I know my CBC before I get treated, in case it may affect the treatment? I am asked to get a CBC right away and then see the hematologist who will check my ear and determine the seriousness of the situation. Minutes later she cancels and suggests (this through her receptionist) that I just go to my GP. Thankfully I am able to do so, but I am left no time to get bloodwork first. I am given antibiotic/steroid drops that are used for swimmer’s ear. Not that I was swimming at all, but as all opportunistic bugs in the system, they leap at a chance of manifestation and this time it took the form of otitis externa. Last time it was shingles. I am not sure which is worse at this point. The pain and swelling have kept me from eating anything tougher than oatmeal and lentils, and those get boring pretty fast. Today I actually managed, VERY carefully and slowly, to brush my teeth– before I had been brushing half my mouth and rinsing with Listerine.  So now I am feeling a little more human, albeit still pretty hungry, and the pain is bothering me more. I can’t wait till bedtime when I can administer the next 4 drops.

So no more Vidaza. One has to wonder how important that route was in the first place. So far all it has done is weaken my already weak immune system. And make me think more seriously about alternatives.

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