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 news 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 that was given for the nausea that I am to expect, among other possible side effects. I tried 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 my family is 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!! 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 is 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 they’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 I 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 an age– she is so sweet and kind and offered to help with anything. My only recommendation, as she is 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 was opening the door to leave, my spirits came back in time and we went together to Judith and Paul’s for movie night and 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 about it last week I got a friendly yet 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 the 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!