A Nutritionist’s Dilemma

Yes, it is good to be home with family again and in a familiar bed (though my back is still sore and may require chiropractic treatment after the weekend). Now it seems so long ago when I was in hospital. I did get a reminder yesterday when I went back to the other hospital where I had a follow up with the ear/nose/throat fellow. I believe Dr T in KGH fought to get me in initially as I was a kind of priority patient, but now that I am not, I ended up being the last to be seen, waiting almost two hours for a three minute check up. The frustration was exacerbated by lack of food and water and stress about who was taking care of Jess who had spent the day at a babysitting course. It all worked out, but I was reminded how important it is to keep me fed on a regular basis– everything is so out of proportion and I feel like a whiny bitch who has forgotten that just a day before I was so grateful to be free. But this was not the way I wanted to be spending my first day of freedom.

My dilemma is this. Being neutropenic, meaning of low neutrophils and white blood cells, surely there are foods to avoid in my daily diet.  Foods that may contain bacteria. That means most fruit and vegetables, uncooked herbs and spices, apple cider, raw nuts, salad bars (naturally!), potato/macaroni salad (which I was served on two occasions in the hospital), unpasteurized dairy and honey. But what I did not know was it also includes miso, tempeh, dried fruits (though other lists say it’s OK), Caesar salad and dressing (even packaged?), feta, sharp cheddar and herbal nutritional supplements. On only one list did I see processed packaged cold cuts/meats on the NO list, and on others it was acceptable. Listeria, anyone? I have never seen mushrooms on any list, which befuddles me as they contain fungi that can lead to fungal infections, which as you may know can be pretty nasty. How about avoiding excess sugars and complex carbs that feed candida? That can become quite a nasty infection as well. Nevertheless, at no time was I given any such information upon discharge, let alone while I was an inpatient. I am aware of some of these because of what I happen to know about my illness and also what I learned from the food safety course I took a few months ago. At the meeting with my hematologist, the only recommendation suggested was to avoid salad bars and wash hands wash hands wash hands…. From the research I have done in the last few days, I find conflicting information about whether or not restaurant food is acceptable, where yogurt and probiotics factor in, and other ambiguous things. On one list I even read that though patients are able to eat citrus foods, they are not to handle the skins and peel them!

One of the things that everyone agrees on is no raw vegetables. This is a disaster for a raw foodist! For me it is manageable, but what I am facing now and in the future, hopefully for a short time but it could be longer, is something that goes against every belief I have about the healing power of food. In order to get through this, I must resort to SAD, aka Standard American Diet. And sad it is, because it includes mostly “dead” and processed foods. Foods with no life energy.

I have passed on to my meal group the information I have about what is recommended, guidelines we need to follow at home as well. After a time, this will become second nature. But here’s something weird: ever since watching Edward Scissorhands with the kids in the hospital the other day, I have had a craving for ambrosia salad!

A Better Development!

I am pleased to report that I am updating you all from the comfort of my own home!

After two relatively good sleeps and a significant reduction in ear inflammation, I was starting to feel positive about things. When I saw my bloodwork from yesterday, however, I was not so much so, as the neutrophils and hemoglobin and platelets all seemed to be dropping again. Today’s counts showed another uptick. It was explained that this up/down action is normal as my immune system tries to get a grip already! The numbers are good enough that I can self administer oral antibiotics, avoid crowds, keep putting drops in my ear and get out of the hospital. There was some talk about me getting a transfusion, which sucked because it meant I would probably need a PIC line in the arm (like last time), or a portacath (in the chest). Dr T told me that this would not be necessary and in fact, since it has been seven years since my last transfusion, adding another foreign element to shock my body would be more stressful and risky than just sending me home and letting my body deal with it on its own. So the ball is really in my court, so to speak.

Our meeting with the hematologist was revelatory as the first thing she told us was that I did indeed have a match.  !!!  It seems that there was a series of miscommunications and misinformations that swirled out of control to the point of frustration for all parties, but it is finally resolved. The question I have is, if she told me this on the phone two weeks ago, why didn’t that register?  Is it still the residual effects of chemo brain? Don’t laugh, it’s real. There is also a certain percentage for whom this becomes a permanent malady. Considering how I have been scoring statistically, I say I fit into that category.

Having a match is huge, and apparently finding one as quickly as we did was a miracle. Too bad we weren’t using that time to celebrate! Part of the confusion I think was why we hadn’t heard from Ottawa’s transplant team. They only just left a message today for an appointment in early December. I also have all the paperwork I need to send to that clinic in San Diego so we’ll see if anything comes of that.  I have to try. I can also make it obvious to Ottawa’s health team that this is where  my head (chemo laden as it is) is.  Maybe I mean my gut. Hey, they’re connected. Don’t laugh, that’s real, too!

The kids will be delighted as they were to go elsewhere after school today until Pete got back from a quick business jaunt to Montreal (which had been part of our plan, using Via Rail, for which I got an unexpected complete refund!– If you’re in the neighbourhood, 50% off fares from now till mid January, excluding holiday times!). Instead we’ll clean up a bit– rather, they will, and then we’ll kick back and watch Modern Family and some movies together!

And now, to the shower…!

Mind Power

My second night here was the worst, when the infection just seemed unbearable. I could actually feel it growing, feel the skin stretching as something from within percolated and pushed upward and outward, a slow but inevitable enemy encroachment toward the King’s domain.  I decided I much preferred a cockroach in my ear: true story, but some other time. I also decided to take charge of some imagery. I know some cancer patients choose things like Pacman or spaceship lasers to take down tumors.  This militaristic image was always at odds with my belief that we not see our body’s failings as an enemy to be defeated, but a defection that can be repaired with love and understanding. But not tonight. Tonight it felt like war. I could hear Picard’s famous words. I wanted this seemingly unstoppable invader out!

I pictured the bacteria as dark drooling ogres and my neutrophils as plucky underdogs who got the job done with teamwork and collaboration. I pictured them pulling the net down and out from my ear canal, dragging the ogres away. A moment that has always held a strong emotional impact for me was the scene in Finding Nemo when all the tuna swim down together and bit by bit the net weakens and they are freed. After a few moments of focus, I felt a shift, a reduction of pressure. Something was alleviating that tennis ball in the ear sensation. Nerves in the ear are very sensitive so I felt every subtlety. Eventually I was satisfied that enough had changed and though the ear was still enflamed, I felt I had gained some control. The next day was one of my better days. Until that following evening when it happened again. Frustration. It’s hard to stick to the mantra I Can Heal Myself if things keep getting worse. I need some light to crack through to tell me something is working.

A New Development

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.

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.

Set back or blessing in disguise?

A new development began on Friday, Nov. 11, Remembrance Day.

My hematologist called and we had a long talk about a new turn of
events. It seems that Health Canada will NOT cover the Vidaza because
I have already gone through the process of finding a donor. Usually
this is not a problem, as they have done this for loads of patients,
but somehow, she said, they “caught wind” of my case and will no
longer supply the drug. This is what patients use instead of
transplant, but for BMT patients it is used as a deliberately
temporary measure, which I guess is not acceptable by Canada Health
standards. Honestly, having such rules and restrictions is ridiculous
red tape– I mean, isn’t their objective to help patients get better?

I am feeling rather terrific other than those first few days of the
drug where I was mostly just depressed. Dr D was quite despondent
about it all and said she and the pharmacist have been trying to
make it work but HC just won’t budge. Particularly frustrating is that
Dr B in Toronto, who told us that Vidaza was covered, is mysteriously uncommunicative on the topic. What I did learn is that the cost of the first round of treatment is being absorbed by the hospital, all of $4500!

That is the bad news. The other perspective is that this buys me some
time to look into alternatives. This week I asked for copies
of my medical records to send to a clinic in the US that I have been investigating (more on that later).
In the meantime I am awaiting Ottawa’s word on what is the new course of action. The last bloodwork I had yesterday indicated that I am now very low, as is expected at this point in the treatment cycle, and we expect the numbers to start going up now. I will check again on Monday to confirm this.

I wanted to mention how awesome nurses are. They are like secretaries; they are the glue that holds everything together, they know everything and make the connections needed to help patients/clients. I love my nurse. She is the one who clarified things when I was confused and is getting together the paperwork I asked for to avoid going through the records department and paying over $35 for someone to rifle though millions of files to find the results I want.

One reason I am wanting these is because for one thing I just want them for my own files. I started collecting them last time but there were so many and I got bogged down with other stuff like, say, survival. The hospital has a huge file on me now, but I just wanted to collect and graph bloodwork (CBC) over the years. Patients actually have a right to their files and need to ask for results of any tests if they don’t get them from the hospital. Too often we remain complacent, assume that we don’t need to know, but it is part of being a proactive and conscientious patient.

The other reason I want these papers is to send them to a clinic in the US. I came across several in my research and of those, a handful look good (the Gerson Institute being one) but they are all focussed on cancer. However the Issels Clinic in San Diego intrigued me the most because it seemed the most integrative, and they weren’t averse to using chemo if it was necessary for treatment. Actually, the more I read about it, the more it seemed like exactly what I want in a healing clinic.  I was most impressed that within 24 hours of submitting a request for information, I got a call from the clinic asking for said paperwork to determine if I can even be considered a candidate for patient. (They had several illness listed in their menu but I did not see MDS, though it is not as “popular” as other diseases so it may not have been there for that reason.) There is a sister clinic in Tijuana, Mexico. Both clinics have served several Canadians and some patients with leukemia. If I choose this course, which in a lot of ways feels right to me, it will cost a lot. I mean, a lot. There are ways to cover much with special insurance options, but it also means a flight and presumably extra accommodation if any family accompanies me. It is something to consider. I wouldn’t be truly me if I didn’t.

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Vidaza: Round 1

Day 1, October 24, 2011

Got the 9am boat to my first injection appointment, and as we are pulling out of the dock I realize I forgot the form I need. Pete and the kids were to take the next ferry over as Jess and Skyler had dentist appointments. The plan was, since he has no phone, Pete would call me on my cell to arrange where to meet after my thing. When I get there I see an enormous line to check in, but there is Lou, who got the message I had messed up with the bloodwork form and showed me the chemo room, which is where I need to go from now on. I checked in, saw the receptionist highlight my name, and sat to wait. I was working on this blog and got so wrapped up I didn’t realize how much time had passed, and suddenly it is 2 hours later. I am now getting a little antsy and check in again and somehow I slipped through the cracks. Suddenly there was a flurry of activity to get me in yet then I wait another hour, after being told 15 minutes. I am now hungry, unable to contact my family, and tired of answering questions. The pharmacist asked if a BMT was off the table and I said no, then he paused. I found out later that if BMT is not an option, then the azacitidine/Vidaza is covered. This is news to me. They are going to sort it out, and they better. I am not feeling terribly confident. I am confirmed for tomorrow and the rest of the week at 9:30 which is the earliest I can get there and which I repeatedly explained to various people. It seemed like everything was new to them. Having a view of the lake and cable tv in the IV section was small comfort, especially since I witnessed the degradation of the day from pleasantly sunny to crappy.

I got 2 shots in the fatty tissue in the arm so it didn’t hurt. I was given a yellow tablet called Ondansetron that I need before the shot. No one had given me one of those either, so I had to wait for that… there is another prescription called ProchlorperazineI was given for nausea that I am to expect, among other possible side effects. I decided NOT to read them all since I was superstitious having read them when I was getting ATG and I ended up experiencing all of them, including anaphylaxis. (Ultimately I had more success with the  rabbit version ALG ). But I read the inserts anyway because they said important things like best not to drive, get up slowly, expect dizziness, etc. Finally I am released into the pouring rain, still no phone or text message. How strange. I go to The Goat and naturally they are gone, but at least I can order a soup to take out. Oh, but they are sold out. Shit. I have time to get a miso soup across the street, and run into Tully at Quarry Pharmacy where I am getting my drugs. I was honest when he asked me how it was going, but not because of how I am feeling now, but because events had seemed to conspire against me from the moment I got up. So sorry about that, Tully!

But now I do feel crappy. I needed something else, and decided a coffee might nip any nausea in the bud, and while I am at Tim’s drive thru, why not get a PLAIN sour cream donut. The rain is coming in the window and she is taking her time repeating the order back to me so when I pull up and negotiate the change in US and Canadian coins, I don’t check but find out in the ferry line that my donut is encrusted with sugar! Precisely what I didn’t want. Stupid! Then I lose it and cry into my miso soup. Apart from everything really sucking, I come to the realization that from this moment on, the old me no longer exists. I am on the track to a new marrow, with luck a new life. I miss the old me already.

Finally the phone rings, and everyone is at Kev and Sal’s. Pete had left so many messages my mailbox was full, but I look again and there is NOTHING. Thanks, Telus, you suck! I just spoke to them last week about getting messages hours later and they said they fixed it. Pete told me something weird had happened to Skyler around the time I was getting the shots– he started to cry and said he missed mommy! Shit! My mom went through a similar empathetic experience when I was birthing Skyler. What an interesting link to explore!

Day 2, October 25, 2011

Went to bed early-ish, around 9:30, and woke up when I heard Skyler fall out of bed and climbed in with us, then I slept through the night till 7:20 feeling pretty good. One side effect that was expected was some tenderness and redness at the injection site which the nurse recommended I treat with EPO (evening primrose oil). However, what was odd was that my teeth seemed to be sore, so I couldn’t eat much of the granola  I softened with yogurt… darn! I was cautious last night about dinner, as I was told to eat like I am seasick– toast, bananas, broth. But I had an appetite and ate a small amount of chicken and had rice soup as well. My stomach was definitely doing strange things. I understand Ondansetron blocks serotonin which is in the gut, and this can ultimately impact my mood as well. Today was a much better day, it was sunny, things got done sooner. Pete, my super advocate, accompanied me to the clinic today to give an earful about how I was (or wasn’t) treated yesterday, and to discuss with the pharmacist the circumstances around whether or not we are covered for the drugs.  The pharmacist remembered us from 7 years ago, when we had a serious problem with a mixed up prescription and providing the Neupogen that I required and was not covered. Apparently the Vidaza treatment for just one round is about $5000, so having it covered is certainly a benefit! The glitch has to do with the fact that I am a bone marrow transplant candidate, meaning I have another option for treatment, whereas those who don’t take azacitizine indefinitely. Very screwed up. The same happened to me with AA, where I did not qualify for Neupogen coverage because I was not diagnosed with cancer, even though this drug was essential to bringing up my white blood cells, and incidentally, my reds as well, something that was unexpected.

I have to share this observation, because I am a health advocate, and it is this. The volunteers at the hospital are terrific, they scurry back and forth between patients hooked up to IVs in reclining chairs and ask if we need blankets or anything to drink. Available options are water, juice and pop.  More than once I saw the ladies walk by with a Brisk or a diet soft drink, neither of which are doing patients any favours. In the lobby downstairs there is a makeshift vendor’s station, where one can buy any kind of junk food, or bananas. Naturally, the junk food is cheaper than the real food.  Until this gets turned around properly, we cannot really consider a hospital a healing institution. There is a bigger picture involved here which I won’t get into, unless you want to read about it on my business blog.

So overall, today was a breeze compared to yesterday. Keeping fingers crossed!

Day 3, October 26, 2011

Now that everyone knows who I am I seem to be doted upon much more. This visit was just under an hour, compared to 4 the first day and 90 minutes the second. So streamlining is evident. Although I have gotten a few conflicting appointment times that required confirmation. One wonders how far reaching the chaos that is the Cancer Clinic, still undergoing renovation, is. The tooth pain has diminished noticeably, though what I hadn’t noticed was my lack of BMs (and this does not refer to marrow, BTW). I understood that constipation would be a side effect and no amount of oatmeal is doing the trick, so I will be going to the flaxseeds and water remedy now. I don’t feel bloated, and my appetite is super– having soups everyday is no hardship when the weather is miserable outside. One symptom that may or may not be related to the shots, one in each arm, is soreness is the upper back and shoulders, as if I had been carrying a heavy backpack, which I have not. The good thing about this was two lovely massages from Pete, thanks! Oddly, the pain seemed to gravitate from the left to the right side as I was getting the shots first in the left, then the right arm. There is a small amount of redness like a splotchy rash on each arm which I have treated with evening primrose oil. Today the shot went into the belly and we’ll rotate wherever there is fatty tissue. So you guessed it, the butt is next!

Day 4, October 27, 2011

Now things are running so smoothly. Book, water in hand, shots come within the hour, and off I go. Very uneventful the rest of the day, thinking this isn’t so bad after all. Except that I am still rather seriously constipated (I suppose of all the side effects, this may be the most benign) which is something I very rarely am, and even then it passes quickly. Here there is no passing whatsoever. I have tried everything I have at home but clearly need more in my arsenal. I was even so desperate to ask the nurse if she could give me something in case I don’t make it through the weekend and she said, oh no, you should try natural things like prune juice and lots of water, etc etc. I was most impressed by this attitude. There is hope yet!

Day 5, October 28, 2011

Another pretty good day, thanks to the sun. I went to a very interesting energy healing session with RS and a few incidents came up that are perhaps a little too private for this forum, but a few releases and a sudden realization that I can overcome this on my own were defining moments. I went off all over town to complete my toolbox which included Bentonite clay, prune juice and psyllium.  I was greeted immediately and warmly by Jodi who I have not seen in a age– she is so sweet and kind and offered to help with anything. My only recommendation, being pregnant and not a candidate for blood donation, is to have the cord cells saved after birth as insurance. I hope I convinced her to come to our monthly nutritionists’ brunch next Sunday. If I am up to it– after the weekend I get 2 more sets of shots, and then we hang tight while my CBC drops, then rises triumphantly. Right? I was doing well today, which I attribute to the sun, but my energy level only lasts so long, and after missing the 3pm boat, I was getting tired and cranky and stressed over the dessert I was supposed to be baking for the pot luck/movie night tonight. Instead I had a short nap, and just as the gang were opening the door to leave, my spirits came back in time and we went together to Judith and Paul’s for The Tree of Life. Interesting and beautiful and a challenge to our plot driven psyches. It was later than I had been up in a while and it showed– I get this singlemindedness that involves being in my bed NOW! Fortunately, I love my bed, even though the ergonomic pillow I struggled to get has been waylaid at the cottage since last month. But it is comfy, cozy, I have awesome dreams, and sleep well, 95% of the time. The other 5% has to do with interruptions like snoring and kids sneaking into bed.

Day 6, October 29, 2011

No shots today so I got to sleep in. Wondrous! I took a bath in the clay, drank some with psyllium husk capsules and loads of water, came down to breakfast, and I swear the moment the sun went behind heavy clouds (OK, so it’s not snowing like in NY right now…), my energy drained and I was feeling a little nauseous. Time for a lie down, then– yay!– a bathroom break, just enough to ease the pressure. I have noticed that with increased constipation I feel more and more irritable. There has to be some connection between that and violence/crime. Anyone want to take on that study? I already know diet has an impact on mood, so this is no stretch.  I am wondering if the nausea is my body’s way of saying– wait, where is the Dansetron (anti=nausea) that I take before the shots? So I am having some ginger tea, grating the ginger (not from China, thank you) on the ceramic garlic grater that Pete got in California, made in Gilroy, one of the major garlic hubs of the world.

Today is just a lazy Saturday kind of day– Pete and Skyler are at the village pumpkin fest and later tonight we may order some turkey dinner for take out. Pat will be spending the weekend with us, and I have invited Leann and Mark to dinner tomorrow to thank her for house-sitting when I was away earlier this month, and to honour El Dia De Los Muertos. So I see a Mexican themed dinner and a great big Hallowe’en cake!

Should mention that I am scheduled for some standard testing in the next couple of weeks, a cardio one called ECHO and a pulmonary one called PFT. I managed to get an appointment with another doctor at our family clinic because my regular GP was booked till the end of the month– all I want is some therapeutic massage. Getting that request was a bit of a fight with a less than sympathetic receptionist, but after next week I can get a few at least. Also have a chiropractic app’t set up for Monday after the treatment– Dr M is also an osteopath and I get all that, plus a nice shoulder massage, in each visit. Can’t wait!

Day 7, November 1

But wait, isn’t this Day 9? No, because the treatment runs 7 days, not counting weekends. How this affects the sequence of shots is a mystery, and when I asked last week I got a friendly unconcerned response like: that’s how we do it with all the patients! OK, but there seems to be something strange about  just breaking a series of 7 days’ worth of a chemo drug just because of the weekend… So no one gets chemo on the weekends? This seems odd to me. Anyhoo, that is “how it goes”!

Technically, then, today is my last day of Round 1. The weekend was a nice break from getting up early and having Pete put the car in line for me so I can get on the 9am ferry. I used the time to baby my bowels. Yes, it was bothering me how backed up they were, something that is so foreign to me. Since the Bentonite clay, psyllium husk caps and extra extra EXTRA water, I have managed to relieve the pressure, so to speak, but things are by no means normal. After today I will make another attempt as the clay won’t be interfering with the drugs. I am this close to seriously considering the coffee enema…Other than that “congestion”, the weekend felt kind of blah, low energy most of the time, except for the flurry of activity in the kitchen to prepare for the dinner I had invited Leann and her fam to. I went all Martha Stewart, new tablecloth, cored mini pumpkins in which to serve pumpkin soup, beef enchiladas to acknowledge the Day of the Dead since I didn’t have any skull molds handy… and a big ol’ chocolate Hallowe’en cake for dessert!

I celebrated my last day of Round 1 with a medium Tim’s and a sourcream donut PLAIN! This time I checked to make sure they got it right. I was feeling pretty good, the sun was out, Glenn Gould was playing Bach on CBC radio, and as I contemplated the fate of the poor fellow who was curtained across from me at the clinic getting chemo while under police watch, I had to wonder which was worse– having cancer or going back to Kingston Pen. In my little world at least, life is good.

From this point, unless I have something profound to add, I won’t be blogging again until Round 2. By then I will have had a few weeks to feel my numbers drop then climb.  My increasing breathlessness is a testament to the former. I will also have gone to an evening with icon William Shatner in Montreal and a chakra workshop (root, base, Muladhara, All is One, red, adrenals, blood, marrow… see, I remember from nutrition class! At least where to find the chart I made…).  I anticipate both events to be exhilarating!


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