Is today significant? It is 21/11/12, a true anagram. For me it was an important turning point. You see, I am currently in hospital, private room, because on Saturday I trusted my gut. Yay, gut! You visceral thing, you.
To back track a little, I was noticing a strange sensation in my right ear. It became a little itchy so I doused some tea tree oil on a cotton swab and lightly delivered some to my ear. A couple of days later I noticed it was now starting to swell to the point where it was hard to open my jaws enough to chew, so I described it to my friend/nurse, someone everyone must have in their life. She told me it was likely otitis externa, or swimmer’s ear. It was not going down with anything I have at home, so after having coffee with my friend, I consulted the clinic. I had been told that if I ever had a temperature of 100 or more I should admit myself immediately. Technically I didn’t have any fever, but I felt an inflammation in a sensitive body part might qualify me to go in. But what I didn’t want was to have every conceivable protocol thrust on me without anyone knowing my history. So I dutifully called my contact at hematology who called me back to say I should come into the cancer clinic (which is where I get bloodwork done) and then the hematologist would look at my ear and determine what, if any course of action might be required. This seemed sensible to me. Not five minutes later, I got another call saying just come in for blood work and see my family doctor. Trying not to feel brushed off, I went to the family doctor first because she had only one opening that morning and it was coming up fast. I was given antibacterial/steroid drops for the inflammation. On my way to the clinic for blood work, the school called to tell me Jessie was suffering from headaches again (this since getting a not too hard bonk on the head) and wanted to come home. At that moment her welfare was more important than mine so I postponed the blood work till after the weekend.
Lately I have been avoiding crowds so my attendance at the local craft fair, the baby shower across the street and school volunteer programs had to be sacrificed and the weather, like most Novembers, has been very unsettled, chilly and brisk one day, sunny and warmer the next, plus some ferocious winds that seem to come out of nowhere. So Saturday I decided to lay low in my jammies and robe. By early afternoon I was noticing I felt the air on my skin made me feel cold, but I never felt feverish. I was warm because I was all bundled up. But later I decided to follow my instincts and check my temperature, which first read 104! It turns out I was overheated with my robe on so I did a calibration test on Jessie and then did me again, and it showed 101.3. That was over 100 but I still really wasn’t feeling feverish. However, a decision had to be made quickly because if it got worse and it was in the middle of the night with no one accessible and no ferry, I would be in dire straits indeed. So I chose the precautionary route, got some clothes and toothbrushes for the kids to have a sleepover at their cousins, and I went to emerg, a 5 minute drive that took 30 because of the Santa Claus parade!
I was admitted into emerg and was put into a kind of incubation room, passing some cheery and smiley nurses who would not have been out of place as Pan Am stewardesses. I was poked and prodded and asked several questions as part of the normal protocol of a Saturday night emergency healthcare team that knew only what I told them about my medical history. This meant when I asked for something to eat, which I hadn’t done since lunch and that was soup only, no one knew that a diet ginger ale (really?) and an egg salad sandwich exposed to the air and made with ungloved hands were not conducive to my health. I settled for the “chicken soup” and saltines and even broke down to have the arrowroot cookies because they melt in your mouth. (BTW, have you ever looked at the ingredients of what is often one of the first solid foods we give babies?) I was given a chest xray to check for lung infection and had loads of blood taken out of me for tests. At one point one of the nurses asked me to lift up the gown I was now wearing so she could give me a needle. What’s that? It’s a blood thinner. Claxon alarms go off in my head. Are you kidding me? I have low platelets, it’s in my file! I asked her why on earth would I need that? I could not believe the response– because I would be lying down a lot and it was to prevent blood clotting/thrombosis. I think I’ll just walk around, I responded, trying my best to sound firm but pleasant. She did not return with the needle. But this made me think two things. One, fortunately I am on the ball and know that such a “routine procedure” would be disastrous, and if I were someone who was elderly or confused, I would not have found reason to speak up. Second, this kind of careless procedure is an example of things not being properly communicated to caregivers and how once we cross that threshold of admissions, we are all processed the same, as per the medical model that evolved from the industrial age. The purpose of this is efficiency but it should not be so at the expense of someone’s health. Message: don’t be afraid to speak up! But not so much that you get labelled a belligerent or non-compliant patient. Ask if you’re not sure. You have the right to know what’s going on and why. And never assume that staff knows about everything in your file.
A few others pop in, two young doctors who look cute even with masks, and then a perky blond and also young female doctor enters and who begins our talk with an explanation of test results so far and then without another breath told me I’d be staying. Well crap! Actually, I think I said shit! It meant a more complex plan of mobilizing kids, friends and appointments planned for this week, and knowing how stressed Pete would be, still thousands of miles away in Dubai. The worst was telling Sal that the kids would have to wait longer for mommy to come home, and then I broke down as the reality hit that I did not want them to go through this. But such is reality, and they can’t be completely sheltered. They’ve known something was wrong with mommy’s blood for a while. The monitor attached to the IV in my hand beeped inconsistently all night so I got little sleep at all. Later the next morning I was moved up to Kidd 9 where the cancer patients and other immunocompromised people are. More smiley nurses, all concerned and clearly interested in helping the patients be as comfortable and informed as possible. Go on, hug a nurse today!
Day and first night at Kidd 9. Another set of great nurses. I was in time for lunch, sweet and sour chicken and rice (not bad but inedible because I can’t chew that up and it’s not hot– bacteria!), potato salad (another bacterial smorgasborg for a neutropenic, therefore also inedible), sugar dusted white flour processed cupcake. Fortunately lovely Gertrude Annie came by (my first visitor!) to drop off some essentials– avocados, bananas and plain organic yogurt! Now we’re talking! Kev and Sal came by with my laptop and a few other items from home, a plan crafted by us to get said items from A (home on Wolfe Island) to B (Kidd 9) without anyone having to ride over on the boat. Thanks, ferry dudes! Such cross lake package crossings are a timesaver. Now that I was reconnected to the outside world, the emails and phone calls came flooding in, I was able to work on my blog and other stuff, and I had a drive and screen on which to watch movies!
Bedtime comes early in a hospital room, mostly cause you just want the day to end and the next one to get closer to seeing how much, if any, you have improved. Did I mention when Annie was visiting my ear was so swollen and red it looked like an enflamed baboon butt? (nod to Sue Sylvester) The color and swelling diminished by Kev and Sal’s visit, but by bedtime the swelling came back and brought whole bucketloads of pain with it. Now my ear was completely closed off, no room for ear drops. I asked (begged?) for something for the pain, and was given one teeny tablet that was a big deal and seemed like I was receiving it from a private dealer. Had to take it in front of the nurse in case I left it by the bed and some junkie came by to score some free narcotics. Needless to say, the pill’s effects only took the edge off and didn’t last long. I had to wait for a second dose, regulations from the dispensary, and those two hours of sleep were interrupted by more pain. At this point it was really agonizing and in my mind I was composing all kinds of arguments about why I want to see my hematologist NOW and why I think Vidaza sucks! And why these antibiotics don’t seem to be WORKING! And things are just getting WORSE! The pain was now at an 8!! I vented like a pitiful puppy, my all caps force long exhausted, until the nurse got me a double dose. Watch out for hallucinations! she said as she walked out. I couldn’t tell if she was kidding; it was midnight and I was sleep deprived. But within 20 minutes a slow blanket of calm and relaxation that engulfed every organ of my body took hold and cuddled me up into four hours of painless bliss. I was so relaxed, I found myself snoring, something I never do. At precisely 4am the pill’s effects were gone, and so was my cozy paradise. Now the pain was inching towards a 10 and I couldn’t stand the thought of not making it through another four hours without guarantee of seeing a doctor. I got a second dose, waited for the dark satin curtain to fall, and the next thing I knew the sun was already up and I had slept painlessly past 4 hours!
Day 2 at Kidd 9
The pain was gone for now, the swelling a little less prominent with enough room for drops. Breakfast today was oatmeal, something that is my standard daily energy and fiber source. I was enthusiastic, but what was I thinking, this was the embodiment of gruel. Pass. How about the “scrambled eggs”? Maybe it would taste good if I was out in space for a few months. How hard can it be to scramble up some real eggs? Lunch was more hideous mashed wax beans and an attempt at mac and cheese. I mean, how can you go wrong with that? Skyler and Jess had come up for a visit, and Skyler lifted the lid, just as I was saying he might want my mac and cheese, one of his all time favourites. He made a face and said, eww! which is pretty impressive for my special eater. So far we have now learned that criminals and kids both hate this food.
Perhaps it’s time for a little perspective. Everyone’s heard of how horrible hospital food is. I learned that first hand seven years ago, and food brought in by my family I am sure shortened my stay considerably. Does it not make sense that real food leads to better healing? How about local food? That means we provide local farmers jobs and they provide healthy close-by food. But someone’s abacus determined it was more cost effective to outsource the hospital food. Nutrition and health were never on the table in this deal. After all, this is the hospital that let a Tim Horton’s coffee/donut shop in. Having heard the argument for buckling under and contracting with Compass, I am a little open minded and expect bigger and better food. This is what they argued would be best for the patients. But it is not. It is the same crap, does not even remotely follow the Canadian Food Guide which is posted on the back of the daily menus along with “food policy”. Did KGH get hoodwinked? Is it only the oncology/hematology wing that gets crap food while the rest of the hospital gets the tasty entrées we saw published in the press releases? To show it is not impossible, even in this climate and economic zone, you need to see where it happens for real.
By this time the cute doctor from last night came by, curious about MDS and its idiosyncrasies. And I now had a full view, no mask. Still cute. Plus he had some good news. My neutrophils were showing a slight uptick. He thinks that last night was the trough, the lowest point they blood counts would get, and though they’re still busy on the infection, they should start climbing now. Considering my ear wasn’t hurting as much, this made me hopeful. He came by on his way home to check on me too! Sweet. Just before him, a pretty young hematologist came by to see if she could give me some of the answers I was looking for. The second thing she said was how youthful I looked! Even the way she said it made it sound like something from the south, all tinged with mint julep sweetness. Very flattering, considering I am not at my best. I only just managed to take a shower today with a special hair net thing to keep my IV dry. Good thing I just washed my hair, very carefully, the day of admission! This belle, who apparently is not a southerner, returned later with another hematologist, one who recognized me from seven years ago. I knew him only by masked face and by name. He explained that it is not likely that the infection has sabotaged the expected increase in white blood cells, but that it may have weakened it. He also said that this being the fourth week after the first Vidaza, it could be normal for me to just begin to respond now. Others, he said, take weeks. This is not what I was told or had read. In my mind it was always 1-2 weeks. If I had known it might take this long, I probably wouldn’t have been as despondent over the seeming lack of progress. So that makes me feel only a little bit better. They both said they would make a point of letting my hematologist know, as she is not in Mondays or Tuesdays. Something tells me I will still be here Wednesday, and by then Pete will be too, ready for his own version of answers.