Overlap with my previous post:
Tuesday, 5th July 2011
The chemo I receive is the GIGAVECC protocol. Even though I already have an IV in my left hand, the cancer nurse insists on putting in her own. The good news is, chemo nurses have a reputation as being the very best at putting in IVs, and she gets it first time. First I get a cup full of anti-nausea pills. I am pleasantly surprised to learn that science has come a long way, and rather than puking for a week after chemo, the goal is that we find the right combo of anti-nausea drugs so I never experience nausea at all! My right arm with the new IV is wrapped in an electric blanket, while the nurse uses a huge syringe of bright red liquid to slowly push the first chemo drug Epirubicin. I am asked to tell her immediately if I feel any pain, because if the drug leaks out of my vein it will cause serious burns under my skin. Yikes - I struggle to not develop hypochondriac pain through the power of suggestion. Fortunately, the nurse also warns me that this drug turns your next pee bright red, otherwise my first trip to the bathroom after receiving it would have been very shocking! Next I get a bag of saline, followed by the Cisplatin. The final of the three chemo drugs, Capecitabine, is four pills a day, two with breakfast & two with dinner. I'm given a three week supply in three fancy blister-pack books. I'm to take my first dose with tonight's dinner, and my last with breakfast the morning before my next chemo session.
My first chemo session was also serious information overload. It was explained to me that the BC Cancer Agency has five professions that work as a team: doctors, nurses, pharmacists, nutritionist, and social workers. The last three all stopped by during the chemo to introduce themselves, what their role was in my treatment, and hand me a pile of paper to read. I ended up creating a whole binder I entitled my "Cancer Ass-Kicking Manual" for all this stuff.
Later that evening, after my mom had gone back to my house for the night, I felt so great (aka HIGH) that Sterling said if he hadn't seen the drugs administered for himself, he'd not have believed I'd had chemo.
That night at 7:57PM I updated FaceBook with: "Well, it's stomach cancer, not lymphoma. That's OK, just means a more epic battle & more glorious victory! Had my first chemo treatment this morning (11AM-4PM) and it wasn't too bad! Amazing team of doctors, nurses, social workers, nutritionists, and pharmacists in oncology... information overload, lots of handouts to read as homework. Kicking cancer's ass: I've started!"
Wednesday, 6th July 2011 Discharged from hospital. Before heading home we have to make a stop at London Drugs to fill my anti-nausea prescriptions. Then it's home... which is so clean thanks to my family that it's barely recognizable! I am glad to be back in my own space, and to see my kitties. Home, there really is no place like it.
Thursday, 7th July 2011 Mom's plane leaves at 6AM, so counting back we have to get up VERY early to take her to the airport. Both Mom & Sterling think I should get more sleep & not come to the airport, so I agree that we'll see if I'm up or not when they leave, and we say our goodbyes the night before just in case. But I'm awake, and insist on going to the airport. Later that day, at 12:54PM I update FaceBook: "I'm HOME! Discharged from the hospital yesterday afternoon. Trying to settle back into my space. The chemo seems to be kicking in, very tired today, slept most of the morning." Then at 6:54PM that night "FANTASTIC NEWS! 25% of patients with stomach cancer have a particular mutant gene. If you have it, they can add a targeted gene therapy to your chemo that improves your odds. My oncologist left a message this afternoon: I have it! :D Extra-sweet bonus: I'm a mutant, which means practically an X-Man, right?!"
The Continuation - New Stuff:
The news about the mutant gene had us all crying. It was a very busy phone day, and Sterling & I had been out for a bit & came back to a pile of messages, the very best one was from Dr. Katakkar, letting us know that my cancer was HER2+, which we'd been told about a quarter of stomach cancers are. This means that my cancer was likely to respond to Herceptin, a drug targeted at keeping cells that overproduce HER2 from dividing, originally developed as a treatment for breast cancer, and only recently approved for the treatment of stomach cancer. Dr. Katakkar said that the fact that my cancer was HER2+ meant about a 20% increase in my odds of a positive response to chemotherapy, from around 45% that we'd been quoted in the hospital to 65%. Future rounds of chemotherapy would be a different cocktail of drugs, including Herceptin.
Saturday, 9th July 2011 Once everyone was gone, I got sicker & sicker from the chemo & crashed pretty hard mood-wise. No longer having to be "on" & upbeat for everyone else, the reality of how sick & weak I was set in. Sterling had to supervise me in the shower, and we had to keep a stool in the bathroom because as soon as I got out of the shower I had to sit down. I was taking Dilaudid every 4 hours, because that's what they'd had me on in the hospital, so between that and the pill chemo and all the anti-naseau meds, I was taking upwards of 20 pills a day. The worst was that I had to take the Dilaudid every 4 hours even at night, which involved setting alarm clocks for 2AM and 6AM. One night, the Friday or Saturday, can't remember which, I woke up at 2AM & distinctly remember taking the pain pill laid out right on my bedside table, but when I woke up to take the 6AM dose the 2AM dose was still there, and I was in a *lot* of pain for a while... threw me off for the whole day, really. In the hospital it hadn't been a big deal to be woken up by a nurse, pop a pill, and then go straight back to sleep, but at home with the alarm clock the waking ups were much more disruptive to my sleep. Between the surgery and the cancer I was still only able to sleep like I had before the hospital, on my back and propped up by extra pillows. Sterling and I spent hours on the couches downstairs watching episode after episode of Angel on Netflix. One night we even tried sleeping on the couches down there because I felt more comfortable there then in bed. The whole weekend was pretty miserable in spite of Sterling's pampering and heroic efforts to make me comfortable... at one point just sitting on the couch watching TV I was dizzy like I had the spins from drinking.
Sunday, 10th July 2011 Overly melodramatic Facebook update at 1:22PM: "I keep imagining Mother Gaia's devastated fields of Europe after World War I. That's what chemo feels like, this epic battle taking place inside me."
Monday, 11th July 2011 We had to go to the hospital for the ECG that Dr. Katakkar had wanted me to have before being discharged from the hospital. The technician was nice enough, a bloke who sounded like he was from down under originally, though I didn't ask. He was based out of Calgary, and travels all over northern BC and Alberta doing ECGs. He asked me if I was nervous, because my heartbeat was very fast. I don't think I was really, but I was really worn out from the crappy weekend and side effects of the chemo. It would later turn out that because of my super-fast heartbeat the test results would come back slightly abnormal, preventing Dr. Katakkar from keeping me on the Epirubicin when I was switched to Herceptin, the drug that targets the mutant HER2+ gene. Epirubicin is not normally combined with Herceptin, because they both can cause heart damage, but I think Dr. Katakkar was considering this extremely aggressive approach because of my youth & the fact that in his clinical experience, the heart damage would be reversible. But because of the abnormal heart rate, my next chemo would be the standard Herceptin cocktail.
After the ECG, we stopped by the cancer centre, because I'd had such a hard time with the side effects over the weekend. When they asked me how I was doing, I broke down in tears. The nurses were wonderful, got me in to see a doctor, who prescribed a 12 hour version of my pain pills & an IV bag of saline to help me rehydrate from the chemo. I ended up in on one of the chemo recliners with a heated blanket (most missed thing about being in the hospital, hot blankets whenever I wanted one). Getting a new IV was no fun (curse my itty bitty hidey veins) but I did leave feeling SO much better after the fluids.
The nurse also removed the 8 staples (4 per incision) from my surgery. The lower incision ones came out easily, but a couple of the ones in my belly button incision were deeply embedded in the scab, which made pulling them out pretty painful.
Facebook update at 10:32AM July 12th: "Stopped in at the cancer centre after echocardiogram yesterday, since the weekend was very hard (felt like I'd aged 50 years). Everyone there is SO AMAZING, they gave me IV fluids, took out my laparoscopy staples, answered my questions & generally gave me lots of TLC & reassurance. One of the nurse's said, come in any time, you belong to us now. It is so great we have this resource right here in PG! I'm so lucky."
Then at 10:37AM: "I'm feeling so much better today!!! Doctor's switched around my pain meds a little, so I was able to sleep through the night, rather than wake up every 4 hours. I probably got a solid 9 hours last night, for the first time since before I went into the hospital. Amazing what a difference that can make!"
Friday, 15th July 2011
Sterling took me to the cancer ward where I was checked in for day surgery, to get a port implanted in my chest to make chemo much easier. We were delayed a bit because of an emergency surgery, when it was finally time Sterling waited down in the cancer ward while they took me upstairs. Then we were delayed again when the nurse discovered that they had to send to stores for the port device! (Normally I guess they have a few on hand in surgery, but they had done a lot of these implants lately.) It was the wonderful Dr. Wankling who performed the operation, the same surgeon who had done the exploratory surgery that found my cancer. It was a bit disconcerting being awake for this one, but I couldn't actually see anything they were doing... there was a blanket over me, with just the surgery site, my right chest & neck, exposed. I joked after that I was just hiding under the blanket till it was over. I chatted with the doctor & nurses while they were doing the surgery... I remember them saying, now we're going to make a pocket (in my chest for the port) which still sounds kinda creepy. After it was over, the nurse handed me a little booklet which included a card I had to present to a medical professional before they could use my port, and also the serial number of the port. My comment? "Oh good, so if I'm murdered they can use this to identify my body!" I got some *very* weird looks from the nurses! "Like on CSI?" And then one of them said, oh, ok, yes I've seen that, but the others still looked very weirded out that that was my first thought.
Facebook at 8:36PM: "Got my PowerPort VAD (Venous Access Device) surgically implanted today by the always wonderful Dr. Gilbert Wankling. My neck is really sore now that the freezing is coming out, but this is going to save me from a lot of IVs & needle sticks, so I'm sure it's worth it!"
at 9:18PM: "I should add, this is completely under my skin... once everything heals up and the bandages/staples are gone, I'll just have a quarter-sized raised bump on the right of my chest.
I have to say, I was quite nervous about getting the port, but it has been awesome. Instead of the tedious & painful process of getting blood tests and then an IV every chemo, now it is just a small prick breaking the skin over the port, and they are in. I found out during this trip to the hospital that my surgeon Dr. Wankling is also a cancer survivor, and went through chemo about 10 years ago, and he said when he was putting in the device that he wished they'd had them when he did chemo, as he burnt out all the veins in his arms.
Sunday, 17th July 2011 My best friend of many years came through town & stopped by for a visit. It was great to reconnect with her; we've grown apart the last few years since she had kids, but there is nothing like cancer to bring people back into your life. Her husband & Sterling took the three kids to McDonald's so we could visit (and also because kids are little germ factories that immuno-compromised-from-chemo me was supposed to avoid). Facebook update at 1:20PM: "Just had an awesome visit with Amy (and said hi/bye to [her husband] Chris) - so good to see you guys!!!"
Monday, 18th July 2011 My friends & coworkers are awesome... they all wanted to know when they could come by & visit me to keep my spirits up. I finally ended up scheduling regular "visiting hours" of Monday & Friday night after work. This was the first one, and we decided to celebrate by also having a movie night. Facebook update at 10:11PM: Hosted a movie night tonight; lots of fun! Watched A Dog's Breakfast with Krista, Ben, Danuta, Mandy, Apa, and Sue's other-half-who-doesn't-do-FaceBook [Nick]. :)
Thursday, 21st July 2011 FaceBook update at 3:46PM: "Had the furnace & ducts cleaned today - sticker on the furnace says for the first time since 1995! Oops! Guys from Super-Vac was great; he was very surprised by our cat Bob though, as nearly all cats HATE all the noise (our poor other cat Bella freaked out & most of her usual safe places weren't available) but Bob actually followed the cleaner around supervising, noise didn't bother him at all!"
And at 8:15PM: "My painting arrived today! I'm so excited, I wrote a blog post about it.
Wednesday, 27th July 2011 Facebook update at 9:57AM: "Well, this is unexpected! CGA marks were released today for the exam I wrote June 10 (when I was in a lot of pain & still weeks away from the cancer diagnosis) - I passed! 8D"
and at 7:27PM: "Dear Universe, in the month since my diagnosis with stage IV cancer, my immediate family has experienced another serious health scare & two relationship breakups. My boyfriend Sterling has had his step-grandfather & his uncle pass away. Please, can we be done with the bad news already?!"
Can't Remember When Exactly
But I know it was before chemo round #2, and sometime after getting my port installed. The two times I'd puked after the chemo, it seemed to be as much from the iron pills I was taking to correct the cancer-related anemia as from the chemo. So instead of the pills they decided to give me an iron infusion. It was also a good test run for my new port. The iron infusion basically took all day, as they have to infuse it slowly. No real side effect other than a metal taste. The real comedy was before they did it, they took the staples out of my chest from the port surgery. The second staple the nurse went to take out someone bent the wrong way, instead of opening it closed tighter. It was incredibly painful & took quite a while to correct. I kept looking at it which didn't help, so I tried looking at Sterling's face, but that wasn't much help either... he was holding my hand, leaned forward staring at the nurse wrestling with the staple with a look of horrified fascination, like watching a horror movie.
04 December 2011
20 September 2011
Hospital Room #3223
This has been an incredibly difficult post to write, and I'm still not happy with how it turned out, but I've decided to post it anyways & move on already. I didn't realize until I tried to revisit my mindset how incredibly HIGH I was the whole time I was in hospital. No wonder I was able to cope so well with such devastating news! Honestly at the time, I thought I was getting just a little loopy once in a while on breakthrough pain meds, but for the most part I honestly believed all the drugs were doing was controlling my pain. Ah live & learn... so anyways, my recollection of this week is much fuzzier & disjointed than I would like it to be.
I was in the hospital for a little over a week following my diagnosis. Whether it was the wonder-drug Dilaudid or a Freudian slip, most of the time when I went to say "hospital" I would say "hotel" instead. After a month of pain, having a constant staff of nurses ready to give me pain meds and care for me was heaven. Although Sterling & everyone else assumed I'd want to get home ASAP, part of me was actually afraid to leave.
Tuesday, 28th June 2011 The overlap day between this post & the "Diagnosis" one. I was admitted to the hospital through the ER in the wee hours, had exploratory laparoscopic surgery in the afternoon, and after I woke up I was wheeled up to my new home for the next week, Room #3223. After calling my work to let them know I wouldn't be in tomorrow, they sent the first of what ended up being nine flower arrangements. (My dad ended up telling people not to send more because there was no more room on the window sill.)
Early that evening the surgeon Dr. Wankling came in & told me I had cancer. Sterling made a trip home to feed the cats, pick up a few things, and at my request braved FaceBook for the first time to post this update: "This is Sterling updating for Holly. Trip to the ER late last night resulted in a overnight stay + exploratory surgery.... Found Cancer in the Omentum. Staying in the hospital until they track down the source. Room #3223 at the PG university Hospital. More when we know."
I should describe all my hookups... I had the IV in my right forearm that the ER had put in in the wee hours that morning, and I was getting fluids through it. I had what's called a butterfly patch on my upper arm just under my right shoulder - it's a little IV dangly thing that let them push morphine for breakthrough pain. After it became clear that the morphine didn't work for me, they removed it & replaced it with a new one for the Dilaudid. They had also put in a catheter. I honestly don't remember if they put it in during the surgery or after I woke up - testament to the pain drugs. There was a giant patch with an anchor to secure the catheter attached to the inside of my right thigh. Lastly, both of my calves were strapped into a device that was kind of like blood pressure cuffs, rhythmically filling with air & releasing, which were supposed to help prevent blood clots. I was also getting little shots in my belly several times a day to help prevent blood clots - they told me that the sooner I got up & walking around, the sooner those shots would stop, which was motivational - they hurt! From the surgery I had two little horizontal incisions, each closed with 4 staples. One was across the bottom of my belly button, the second at the top of my pubic hair. I joked that the least they could have done was shave or wax me while I was unconscious.
After a whole pile of phone calls, Sterling made the couch in the room into a bed, and we slept. And so started the crazy dreams - looking back I suppose it was the drugs, but I had crazy crazy dreams every night I was in the hospital. The good thing was they were all benevolent - even imagery that sounded a little scary when I described it in the light of day I experienced at the time as comforting & entertaining. Guess I was high even in my sleep!
Some of what I wrote in my little notebook that night: "Cancer. I have cancer. I am a cancer survivor! I, Holly Marie Hill, will never let something as stupid as cancer beat me. I will survive & thrive. Life begins anew. I don't think I can. I know I will." (I was big into underlining.)
Wednesday, 29th June 2011 We wake up & life goes on, even though I have cancer. Who'd have thunk it? Sterling makes the important discovery that there is a Tim Hortons in the hospital. Visitors & more flowers arrive. The first visitor to stop by was my GP, while Sterling was down at the Tim Hortons & I was alone. We have the most incredibly awkward conversation. I was so angry with him, I could barely speak. Right from my first appointment with him at the beginning of this whole mess, I had been terrified that something was seriously wrong, and it turns out I was right. But he never took me seriously & never acted with any urgency. At my last appointment, just two days earlier, he had even talked about how his role as my GP was to help me navigate through the medical system & specialists, and then he had immediately failed miserably at that role. He had never managed to effectively control my pain, and now that I was in the hospital & it was starting to come under control, and I was experiencing what it was like to work with professionals who cared about my pain, it made his failure all the more clear to me. Needless to say I was not comforted by his visit.
The rest of my company was much more welcome. Coworkers & friends came by in a steady stream. The most gorgeous flower arrangement arrived from my father-in-law (he has such impeccable taste, it's hard to believe he's a straight man!) & three of my guests arrived with plants. It was one of my coworkers last day at the company, and I jokingly apologized to him for "stealing his thunder", as today should have been all about him at our office, rather than me.
I was self-conscious about the catheter, having a tube of urine in plain site of my visitors, especially my coworkers. So much for my professional image, peeing in front of everyone! What can you do though? Fortunately I was HIGH enough to just shrug & make fun of my discomfort. The catheter was often physically irritating too - I would feel like it wasn't draining properly & have to fiddle with it. Also for the first couple days it ran red with blood - the nurses assured us this was normal after surgery, but it was disconcerting.
I was really overwhelmed by how sweet & thoughtful all my friends & coworkers were. Due to bullying when I was young, deep down a part of me always believed that no one really liked me, they were just being polite/pretending/putting up with me. But when this happened, it really sunk in on a whole new level that that's not the case, that there was a surprising number of people who really do care about me deeply. To paraphrase Sally Field, they like me, they really like me! I did notice a pattern though: the first time people visited, a lot of them were terrified. I could see in their eyes they were on the verge of tears, very nervous. But everyone always seemed to be much reassured by the time they left, and were back to treating me more or less normally after their first visit. I was so positive & upbeat that it seemed to be very reassuring to everyone. I did worry that people would think I was putting on a show, a brave front for their benefit, but I really wasn't - like I said, looking back I think a lot of my bravery & grace under pressure was the pain drugs.
One visit of particular note was when the CEO of the company I work for came by to talk about the benefits program at work. Now there's something important to note here. I worked for the company first on a temporary contract basis, followed by a short-term contract to cover a maternity leave, before being made a permanent employee nearly a year after I first started working there. When I was finally made permanent, I was offered the chance to join the benefits plan... and turned it down. The previous two workplaces I'd worked hadn't paid very well, didn't have very good plans, plus I was young & healthy so why not pay-as-I-go & save a little money? But this time when I tried to opt out, both the CEO & my immediate supervisor the CFO talked me out of it, said it was a very good plan & I needed to take advantage of it. So I joined. I'm not religious, but I am convinced that there was divine intervention working through them that day. Because if I had opted out, I would be seriously screwed now. Instead I am taken care of by an awesome benefits plan, plus the CEO spoke with the chair of the board of directors and they decided to go above & beyond the benefits plan to support me. Financially, everything is taken care of & that is one stress Sterling & I don't have to deal with. By the end of the conversation all three of us (me, Sterling & the CEO) are holding back tears. Northern Development Initiative Trust's above-and-beyond response to my cancer diagnosis is the way all companies should treat their employees, and how many companies claim they treat their employees, but sadly in reality very few do. NDIT is awesome & I feel so blessed.
One last thing from my notebook, that night I put on my iPod & the first song shuffle chose was "Eye of the Tiger" by Survivor. :)
Thursday, 30th June 2011 My entire immediate family arrives! Mom flies in from Fort St. John & Sterling goes & picks her up from the airport. Later, the little caravan of two vehicles containing 6 adults & 2 bulldogs arrives from Calgary. There are many hugs & much visiting. Three more flower arrangements are delivered, carnations from my grandma, daisies from my cousin & her husband, and a big bouquet from an aunt & uncle. A friend also comes to visit for the first time & brings a pretty yellow teacup rose plant, bringing the total arrangements in my room for my stay up to nine.
Today is also the day they get me up & walking for the first time since the surgery. As it turns out, I am wobbily standing beside my bed when I get visit #2 from my GP. This time I try & express how I feel. I tell him that I am angry with him, that I don't feel he took my symptoms seriously enough & didn't act urgently enough. He does not apologize, just says that it's good to have my feelings out on the table, but that no one expects cancer in someone my age. I understand that he probably couldn't apologize outright without risking a lawsuit, but there are ways of apologizing without apologizing, you know? And he didn't do that. I got the distinct impression that he doesn't feel he did anything wrong, that if given a similar patient he would act the exact same way again. And I am not OK with that. I am even angrier with him when he leaves.
In stark contrast, the surgeon Dr. Wankling's visit is much better. The biopsy results are back, and they indicate that the primary cancer is in my stomach. This was his guess right from the beginning, as he once had another patient, a girl even younger than I am, with a very similar case. He says that he eventually removed her stomach, after which he lost track of her. He was very positive & optimistic. He even asked me if I wanted to go home during the weekend, if they could get my pain controlled. He said he was on vacation the following week, but he was booking me with his colleague on Tuesday for "scopes from both ends" (endoscopy & a colonoscopy) to confirm that the primary cancer was in my stomach.
My work was sweet enough to bring me my work laptop & an internet stick on the condition that I use it for fun & communication only, and not try to do any actual work. I posted these FaceBook updates at 11:26AM: "Hello everyone! My super-awesomely-supportive workplace (Northern Development Initiative Trust) arranged for me to have access to a computer & interwebs while in the hospital, since I am the last Luddite on earth to not have a cell phone, let alone a web-enabled one. So I am typing this myself from my hospital bed." "Feeling better, pain management has progressed a great deal over the last few days. Still no new info, but biopsy results are expected later today. I'm overwhelmed with all the good wishes & prayers - thank you all. I feel so blessed to have so many wonderful people in my life."
Then at 10:29PM: "Update! My surgeon (the awesome Dr. Wankling) came by late this afternoon with the biopsy analysis. Definitely cancer, looks like from the stomach (not definitive). Probably next Tuesday, I'll get scoped from both ends to see if they can confirm by finding it. (Advice from uncle: make sure they clean it well between the two scopes!) Chemo in my future. Also, the family has arrived en masse!! :D"
Friday, 1st July 2011 Happy Canada Day! There was actually a little card on one of my meal trays to mark the occasion, a nice touch. I was on "liquids" meal trays for most of my stay, so lots of soup & jello. The food in the hospital was surprisingly good; weeks later when I mentioned that to my psychologist he said that there are some little old Ukrainian ladies who cook at the hospital & make it much better than most institutional food.
The day was taken up with visiting. My family worked out shifts of sorts so they weren't all there at once. They also insisted on cleaning our house. It was hard for me to accept this help. I'm a lousy housekeeper at the best of times, and the month leading up to my hospital stay was far from my best of times. I was ashamed. But I knew they were all feeling helpless, and wanted badly to have something helpful to do, so I let them. Later when thanking them, I would manage to choke out, "Thanks for not thinking less of me."
There was also a surprise visit from Dr. Wankling, who stopped by on his day off because he wanted to bump up my scopes to the first possible day, Monday. Given this bump, and the fact that they were still having trouble finding the right dose to control my pain, it made more sense to keep me in the hospital until after the scopes were done. I would have the prep on Sunday & be scoped first thing Monday.
I think this was my bad night. I know my bad night was the first night after the catheter was removed, and I think this was it. It was in the wee hours, and I woke up & had to pee really badly. They had taken the catheter out but I was still getting IV fluids. But before I could get out of bed I had to release the cuffs around my shins. They were velcro, and I was able to rip one open & off, but couldn't manage to reach the other one (I was not so bendy after abdominal surgery). I would have pressed the call button to get the nurse, but it was tied to the bed rail which had been lowered, and I couldn't reach that either. I started to call to Sterling to wake up, but after three tries I realized that while I was trying to wake him up, I was also trying to do it quietly enough so as not to wake him up, because I felt bad about disturbing him. By this time I was in tears, partly from the pain, partly from panic. I finally managed to wake Sterling up, he took off the cuff and helped me up & to the toilet, and then went to get the nurse because at this point I was hysterical, bawling my eyes out & apologizing over & over. The nurse came in & gave me pain meds & helped calm me down. Looking back now I realized that this was the terror & horror of my finding out I had cancer finally coming out. I had been so HIGH and upbeat for my constant stream of visitors, I hadn't really had time for the negative emotions to surface. This was the start of them coming out.
Saturday, 2nd July 2011 More visiting. Looking at it now, it seems like I should have been bored with not being able to do anything but lie in bed & visit, but I don't remember it that way. I do remember getting worn out but not wanting to nap because I wanted to make the most of my visiting time with my family, at the same time that they were insisting I should rest & nap.
I wasn't in bed all the time, I was also getting up & doing laps around the floor, pushing my IV pole. There was a big front pocket in my hospital gown, which I'm sure was designed to hold some piece of medical equipment, but I used it to take along the little stuffed hamster a friend had brought me. I named the stuffed hamster Ponyo, an obscure reference to the titular character who loves ham (ham - hamster - get it?). The getting out of bed & moving was something that was greatly encouraged by the nurses, as it prevents blood clots & speeds recovery time. I joked they should post the best times around the floor, I was sure I could beat them! I was a bit annoyed because even though I was the most mobile patient on the floor, I was still getting the little belly shots to prevent clots. At some point a nurse finally told me she thought it was an oversight that the doctors hadn't stopped the shots, and I could refuse them, which I started doing.
I guess this as good a place as any to put in some other details that happened but I'm fuzzy on when exactly. At some point the IV in my right forearm started leaking, so they had to put in a new one. I have itty bitty veins that run & hide from needles, so this was a challenge, and it took two nurses three tries to get a new IV in. They finally succeeded with a child's needle & put the IV in my left hand, which sucked, because the IV in your hand is awkward to deal with for things like washing your hands. Also at some point I was strong enough to get my arm wrapped & taped in plastic & have my first shower. That wonderful feeling after being sick in bed for days & finally feeling well enough to bathe - heaven!
One last thing about being in the hospital: they had a wonderful machine that kept hot blankets. I loved them - they were so comforting. The nurses showed Sterling where to get them & help himself, and I was indulged often.
Sunday, 3rd July 2011 My brother, his girlfriend, and my stepmom all have to leave to drive back to Calgary - they have to work on Monday. We take pictures like these before they go:
We all look so happy, you would think the teddy bear (a loan not a gift from my brother's girlfriend) was a baby & we were all gathered at the hospital for a happy occasion, rather than for a life-threatening disease.
After a last visit with the three who had to leave, and hugs & goodbyes, the nurse comes in with the first bottle of super-laxative stuff to prep me for the scopes the next day. I have a first dose, followed by a second dose in two hours. My mom asks, why two different doses? The nurse can't really explain why, but afterwords, I will describe it like the space shuttle taking off. You know how they have one engine that burns out, then drops off, and the second one kicks in to take them the rest of the way? That was how I experienced the cleanse. After the first hour, I was like, this isn't going to work, maybe I just don't have anything in my system because of the liquid meals I've been fed in the hospital. After an hour & a half, it finally started to work. After the second dose, oh my goddess! My family kindly stays away for most of the afternoon, as no-one wants to be around for this, except Sterling. Dear sweet Sterling... I worried that after this whole ordeal, there wouldn't be much mystery left in our romance, but he was a rock the whole way through.
Monday, 4th July 2011 Scope day. We kept expecting me to get called downstairs for the scope, but after several hours of the nurses saying "they'll call when they're ready for you" my Dad insists our nurses call them. Turns out there was a paperwork screwup & I wasn't on the list to get scoped that day! My dad had to go for a walk to calm down after that, although I have to say that throughout my hospital stay he controlled his temper & urge to take charge admirably well. I am put on the scope list for the last appointment of the day & the surgeon doing the scopes comes up to talk to me about them. Unfortunately he did not have Dr. Wankling's stellar bedside manner. Have you ever had someone who explains something to you, you ask a clarification question, and they just repeat the exact same thing they said the first time? That was this surgeon. My only real concern was that I wanted to make sure I was unconscious for the scopes... a coworker had an endoscopy (scope down the throat into your stomach) that he was conscious for & did NOT recommend it. Eventually after several go-rounds with the surgeon, it was confirmed that I would be awake enough to respond to their commands to shift & rollover & such, but I would not remember any of the procedure. Good enough for me! I was finally taken down for the scopes mid-afternoon, but as soon as we got there, they claimed they hadn't called for me and I was sent back upstairs, where the nurse said they most certainly did call for me, so yet another communication error had to be straightened out, and I was taken back down again. What a gong show! The actual scopes went fine, I don't remember anything after being sedated until I woke up in the scope recovery room, being encouraged to pass gas (this is an important thing after scopes). I was full of air which was very painful so each burp & fart I managed was a great relief. The surgeon came in & showed me pictures of the big cancerous ulcer they'd found in my stomach, confirming that what I had was stomach cancer that had spread to the omentum (Dr. Wankling had described what he found in my abdomen was like cancerous seeds scattered through my omentum). The surgeon also explained he was only able to do a partial colonscopy; while the scope showed the inside of my colon was clear of cancer, it had likely spread to the outside and because of that he hadn't wanted to be too forceful with the colonscopy, especially since they'd already confirmed that the primary was in my stomach.
I was wheeled back up to my room & was finally allowed to eat something. That had been rough - after the prep solution the previous afternoon/evening, I couldn't eat anything until after the scope, which wouldn't have been such a big deal if it had been first thing in the morning like it was supposed to be, but because of the screwup I spent nearly all of Monday not being able to eat.
That evening we all met my oncologist Dr. Katakkar for the first time. He came up to my room to see me after office hours. He was & is wonderful. He's been a doctor for over 30 years & for 20 years he ran his own clinic in Arizona. He was recruited to come up & head our new northern cancer centre here in Prince George just this past January (news article). He is a sweet little East Indian man who always sports a bowtie. His youngest daughter is the same age as I am. He very patiently answered all our questions (facing not only me, but a questioning family panel of Sterling, my Mom & Dad, and my sister & brother-in-law). We all felt like I was in good hands with him.
Dr. Katakkar explained that the file he received was incomplete, so he wasn't sure at this point if I had lymphoma that had spread into my stomach, or stomach cancer that had spread to my lymph nodes. He was hoping it was the first one, as lymphoma is much easier to treat & my odds would be much better. If it was the latter, then I would also need to be tested for a mutant gene that about a quarter of stomach cancers are positive for. If I was positive for the mutant gene, that would also increase my odds. He also explained that whichever it was, my cancer was stage IV, which provoked a strong emotional reaction from us all, even though if we had thought about it we should have been able to figure that out for ourselves.
I immediately decided to harness the power of positive thinking, deciding that it was definitely lymphoma. At 8:19PM that night I updated my FaceBook status to: "OK everyone, I need your help! Today I was scoped from both ends, and as expected, they found the primary cancer in my stomach. There are 2 possibilities: it's either lymphoma that happens to be in the stomach, or actual stomach cancer. We REALLY want it to be lymphoma; it is more common and more treatable. So please if everyone could pray/vibe/fingers crossed for lymphoma. Should know tomorrow. Thanks!!"
Tuesday, 5th July 2011 First thing in the morning, Dr. Katakkar came in & gave us the news: I have stomach cancer, not lymphoma. Fuck. I started crying really hard - I was devastated. Brokenly, I said, "I was really hoping to catch a break." Dr. Katakkar gave me a hug & said, "We just all have to do the very best we can." I bounced back reasonably quickly... yay narcotics! Dr. Katakkar is going to get me downstairs for my first chemotherapy right away, within hours. Later, my Dad will talk with other experts & they all say this is amazingly quick, but Dr. Katakkar has the sense of urgency about him, "there is no time to waste!" that I craved & never got from my GP. But first, I say my goodbyes to my sister, her husband, and my dad, who are driving back to Calgary. Sterling heads home to shower, and my mom & "chemo kitty" (a stuffed cat that a coworker brought me) accompanies me downstairs for my first chemo. My mom was supposed to fly out the next morning, but after talking about it she decides to change her flight to a day later, so she can stay until I am discharged tomorrow. They have decided to keep me in the hospital one more night so that they can observe me for any adverse reaction to the chemo.
The chemo I receive is the GIGAVECC protocol. Even though I already have an IV in my left hand, the cancer nurse insists on putting in her own. The good news is, chemo nurses have a reputation as being the very best at putting in IVs, and she gets it first time. First I get a cup full of anti-nausea pills. I am pleasantly surprised to learn that science has come a long way, and rather than puking for a week after chemo, the goal is that we find the right combo of anti-nausea drugs so I never experience nausea at all! My right arm with the new IV is wrapped in an electric blanket, while the nurse uses a huge syringe of bright red liquid to slowly push the first chemo drug Epirubicin. I am asked to tell her immediately if I feel any pain, because if the drug leaks out of my vein it will cause serious burns under my skin. Yikes - I struggle to not develop hypochondriac pain through the power of suggestion. Fortunately, the nurse also warns me that this drug turns your next pee bright red, otherwise my first trip to the bathroom after receiving it would have been very shocking! Next I get a bag of saline, followed by the Cisplatin. The final of the three chemo drugs, Capecitabine, is four pills a day, two with breakfast & two with dinner. I'm given a three week supply in three fancy blister-pack books. I'm to take my first dose with tonight's dinner, and my last with breakfast the morning before my next chemo session.
Not long after I am setup with the chemo, who should come by to see me but my GP. I was so stressed out seeing him, and I fired him. I told him that trust is very important, and that the way everything played out, I just couldn't trust him anymore, and that one of my coworkers had offered to help me find a new GP. He seemed very hurt & after we spoke he spent quite some time at the nurses station a few feet away filling out paperwork. I was very uncomfortable & couldn't look at him. I just held Sterling's hand & he kept having to reassure me that I had done the right thing. Months later I am still currently without a GP but am still convinced that this was the right decision for me to make. The very thought of the man promotes a negative emotional reaction throughout my body, not exactly conducive to healing! For now, the BC Cancer Agency has taken great care of me.
My first chemo session was also serious information overload. It was explained to me that the BC Cancer Agency has five professions that work as a team: doctors, nurses, pharmacists, nutritionist, and social workers. The last three all stopped by during the chemo to introduce themselves, what there role was in my treatment, and hand me a pile of paper to read. I ended up creating a whole binder I entitled my "Cancer Ass-Kicking Manual" for all this stuff.
Later that evening, after my mom had gone back to my house for the night, I felt so great (aka HIGH) that Sterling said if he hadn't seen the drugs administered for himself, he'd not have believed I'd had chemo. When we went for our evening walk, I decided to leave the floor for the first time. I wanted to see the Tim Hortons everyone kept disappearing to. As we walked past the main entrance to the hospital, I looked out and saw 15th avenue, and had the most surreal moment. That's a street I regularly drove home from work along. It felt like a whole other life, an alternative universe, but really it was only a week ago, and there it was right outside, just beyond the glass from this strange new life, this rabbit hole I'd fallen down.
That night at 7:57PM I updated FaceBook with: "Well, it's stomach cancer, not lymphoma. That's OK, just means a more epic battle & more glorious victory! Had my first chemo treatment this morning (11AM-4PM) and it wasn't too bad! Amazing team of doctors, nurses, social workers, nutritionists, and pharmacists in oncology... information overload, lots of handouts to read as homework. Kicking cancer's ass: I've started!"
Wednesday, 6th July 2011 Dr. Katakkar wants me to have a ECG (electrocardiogram) before I'm discharged, but the department won't return his phone calls. He seems quite frustrated, I think because he is used to running a clinic in the states, where when he wanted something, it was simply done & right away. Because I'm going to be discharged soon, I am moved from my private room to a shared room. I am finally eager to get home. Eventually it is decided that I'm not getting in for an ECG any time soon, so I'm free to go. Discharged, a disgusting sounding word for a lovely thing. We pack up all my stuff to move out, and I give the lady in the other bed my box of the good Kleenix a visitor had brought me & I wish her luck.
Before heading home we have to make a stop at London Drugs to fill my anti-nausea prescriptions. Then it's home... which is so clean thanks to my family that it's barely recognizable! I am glad to be back in my own space, and to see my kitties. Home, there really is no place like it.
Thursday, 7th July 2011 Mom's plane leaves at 6AM, so counting back we have to get up VERY early to take her to the airport. Both Mom & Sterling think I should get more sleep & not come to the airport, so I agree that we'll see if I'm up or not when they leave, and we say our goodbyes the night before just in case. But I'm awake, and insist on going to the airport. Later that day, at 12:54PM I update FaceBook: "I'm HOME! Discharged from the hospital yesterday afternoon. Trying to settle back into my space. The chemo seems to be kicking in, very tired today, slept most of the morning." Then at 6:54PM that night "FANTASTIC NEWS! 25% of patients with stomach cancer have a particular mutant gene. If you have it, they can add a targeted gene therapy to your chemo that improves your odds. My oncologist left a message this afternoon: I have it! :D Extra-sweet bonus: I'm a mutant, which means practically an X-Man, right?!"
So that's it, the story of my hospital stay! I have one more historical catchup post planned to bring my story completely up-to-date, and then I can actually blog "in the moment" which I think will be easier & more therapeutic for me. As always, thanks for reading!
I was in the hospital for a little over a week following my diagnosis. Whether it was the wonder-drug Dilaudid or a Freudian slip, most of the time when I went to say "hospital" I would say "hotel" instead. After a month of pain, having a constant staff of nurses ready to give me pain meds and care for me was heaven. Although Sterling & everyone else assumed I'd want to get home ASAP, part of me was actually afraid to leave.
Tuesday, 28th June 2011 The overlap day between this post & the "Diagnosis" one. I was admitted to the hospital through the ER in the wee hours, had exploratory laparoscopic surgery in the afternoon, and after I woke up I was wheeled up to my new home for the next week, Room #3223. After calling my work to let them know I wouldn't be in tomorrow, they sent the first of what ended up being nine flower arrangements. (My dad ended up telling people not to send more because there was no more room on the window sill.)
Early that evening the surgeon Dr. Wankling came in & told me I had cancer. Sterling made a trip home to feed the cats, pick up a few things, and at my request braved FaceBook for the first time to post this update: "This is Sterling updating for Holly. Trip to the ER late last night resulted in a overnight stay + exploratory surgery.... Found Cancer in the Omentum. Staying in the hospital until they track down the source. Room #3223 at the PG university Hospital. More when we know."
I should describe all my hookups... I had the IV in my right forearm that the ER had put in in the wee hours that morning, and I was getting fluids through it. I had what's called a butterfly patch on my upper arm just under my right shoulder - it's a little IV dangly thing that let them push morphine for breakthrough pain. After it became clear that the morphine didn't work for me, they removed it & replaced it with a new one for the Dilaudid. They had also put in a catheter. I honestly don't remember if they put it in during the surgery or after I woke up - testament to the pain drugs. There was a giant patch with an anchor to secure the catheter attached to the inside of my right thigh. Lastly, both of my calves were strapped into a device that was kind of like blood pressure cuffs, rhythmically filling with air & releasing, which were supposed to help prevent blood clots. I was also getting little shots in my belly several times a day to help prevent blood clots - they told me that the sooner I got up & walking around, the sooner those shots would stop, which was motivational - they hurt! From the surgery I had two little horizontal incisions, each closed with 4 staples. One was across the bottom of my belly button, the second at the top of my pubic hair. I joked that the least they could have done was shave or wax me while I was unconscious.
After a whole pile of phone calls, Sterling made the couch in the room into a bed, and we slept. And so started the crazy dreams - looking back I suppose it was the drugs, but I had crazy crazy dreams every night I was in the hospital. The good thing was they were all benevolent - even imagery that sounded a little scary when I described it in the light of day I experienced at the time as comforting & entertaining. Guess I was high even in my sleep!
Some of what I wrote in my little notebook that night: "Cancer. I have cancer. I am a cancer survivor! I, Holly Marie Hill, will never let something as stupid as cancer beat me. I will survive & thrive. Life begins anew. I don't think I can. I know I will." (I was big into underlining.)
Wednesday, 29th June 2011 We wake up & life goes on, even though I have cancer. Who'd have thunk it? Sterling makes the important discovery that there is a Tim Hortons in the hospital. Visitors & more flowers arrive. The first visitor to stop by was my GP, while Sterling was down at the Tim Hortons & I was alone. We have the most incredibly awkward conversation. I was so angry with him, I could barely speak. Right from my first appointment with him at the beginning of this whole mess, I had been terrified that something was seriously wrong, and it turns out I was right. But he never took me seriously & never acted with any urgency. At my last appointment, just two days earlier, he had even talked about how his role as my GP was to help me navigate through the medical system & specialists, and then he had immediately failed miserably at that role. He had never managed to effectively control my pain, and now that I was in the hospital & it was starting to come under control, and I was experiencing what it was like to work with professionals who cared about my pain, it made his failure all the more clear to me. Needless to say I was not comforted by his visit.
The rest of my company was much more welcome. Coworkers & friends came by in a steady stream. The most gorgeous flower arrangement arrived from my father-in-law (he has such impeccable taste, it's hard to believe he's a straight man!) & three of my guests arrived with plants. It was one of my coworkers last day at the company, and I jokingly apologized to him for "stealing his thunder", as today should have been all about him at our office, rather than me.
I was self-conscious about the catheter, having a tube of urine in plain site of my visitors, especially my coworkers. So much for my professional image, peeing in front of everyone! What can you do though? Fortunately I was HIGH enough to just shrug & make fun of my discomfort. The catheter was often physically irritating too - I would feel like it wasn't draining properly & have to fiddle with it. Also for the first couple days it ran red with blood - the nurses assured us this was normal after surgery, but it was disconcerting.
I was really overwhelmed by how sweet & thoughtful all my friends & coworkers were. Due to bullying when I was young, deep down a part of me always believed that no one really liked me, they were just being polite/pretending/putting up with me. But when this happened, it really sunk in on a whole new level that that's not the case, that there was a surprising number of people who really do care about me deeply. To paraphrase Sally Field, they like me, they really like me! I did notice a pattern though: the first time people visited, a lot of them were terrified. I could see in their eyes they were on the verge of tears, very nervous. But everyone always seemed to be much reassured by the time they left, and were back to treating me more or less normally after their first visit. I was so positive & upbeat that it seemed to be very reassuring to everyone. I did worry that people would think I was putting on a show, a brave front for their benefit, but I really wasn't - like I said, looking back I think a lot of my bravery & grace under pressure was the pain drugs.
One visit of particular note was when the CEO of the company I work for came by to talk about the benefits program at work. Now there's something important to note here. I worked for the company first on a temporary contract basis, followed by a short-term contract to cover a maternity leave, before being made a permanent employee nearly a year after I first started working there. When I was finally made permanent, I was offered the chance to join the benefits plan... and turned it down. The previous two workplaces I'd worked hadn't paid very well, didn't have very good plans, plus I was young & healthy so why not pay-as-I-go & save a little money? But this time when I tried to opt out, both the CEO & my immediate supervisor the CFO talked me out of it, said it was a very good plan & I needed to take advantage of it. So I joined. I'm not religious, but I am convinced that there was divine intervention working through them that day. Because if I had opted out, I would be seriously screwed now. Instead I am taken care of by an awesome benefits plan, plus the CEO spoke with the chair of the board of directors and they decided to go above & beyond the benefits plan to support me. Financially, everything is taken care of & that is one stress Sterling & I don't have to deal with. By the end of the conversation all three of us (me, Sterling & the CEO) are holding back tears. Northern Development Initiative Trust's above-and-beyond response to my cancer diagnosis is the way all companies should treat their employees, and how many companies claim they treat their employees, but sadly in reality very few do. NDIT is awesome & I feel so blessed.
One last thing from my notebook, that night I put on my iPod & the first song shuffle chose was "Eye of the Tiger" by Survivor. :)
Thursday, 30th June 2011 My entire immediate family arrives! Mom flies in from Fort St. John & Sterling goes & picks her up from the airport. Later, the little caravan of two vehicles containing 6 adults & 2 bulldogs arrives from Calgary. There are many hugs & much visiting. Three more flower arrangements are delivered, carnations from my grandma, daisies from my cousin & her husband, and a big bouquet from an aunt & uncle. A friend also comes to visit for the first time & brings a pretty yellow teacup rose plant, bringing the total arrangements in my room for my stay up to nine.
Today is also the day they get me up & walking for the first time since the surgery. As it turns out, I am wobbily standing beside my bed when I get visit #2 from my GP. This time I try & express how I feel. I tell him that I am angry with him, that I don't feel he took my symptoms seriously enough & didn't act urgently enough. He does not apologize, just says that it's good to have my feelings out on the table, but that no one expects cancer in someone my age. I understand that he probably couldn't apologize outright without risking a lawsuit, but there are ways of apologizing without apologizing, you know? And he didn't do that. I got the distinct impression that he doesn't feel he did anything wrong, that if given a similar patient he would act the exact same way again. And I am not OK with that. I am even angrier with him when he leaves.
In stark contrast, the surgeon Dr. Wankling's visit is much better. The biopsy results are back, and they indicate that the primary cancer is in my stomach. This was his guess right from the beginning, as he once had another patient, a girl even younger than I am, with a very similar case. He says that he eventually removed her stomach, after which he lost track of her. He was very positive & optimistic. He even asked me if I wanted to go home during the weekend, if they could get my pain controlled. He said he was on vacation the following week, but he was booking me with his colleague on Tuesday for "scopes from both ends" (endoscopy & a colonoscopy) to confirm that the primary cancer was in my stomach.
My work was sweet enough to bring me my work laptop & an internet stick on the condition that I use it for fun & communication only, and not try to do any actual work. I posted these FaceBook updates at 11:26AM: "Hello everyone! My super-awesomely-supportive workplace (Northern Development Initiative Trust) arranged for me to have access to a computer & interwebs while in the hospital, since I am the last Luddite on earth to not have a cell phone, let alone a web-enabled one. So I am typing this myself from my hospital bed." "Feeling better, pain management has progressed a great deal over the last few days. Still no new info, but biopsy results are expected later today. I'm overwhelmed with all the good wishes & prayers - thank you all. I feel so blessed to have so many wonderful people in my life."
Then at 10:29PM: "Update! My surgeon (the awesome Dr. Wankling) came by late this afternoon with the biopsy analysis. Definitely cancer, looks like from the stomach (not definitive). Probably next Tuesday, I'll get scoped from both ends to see if they can confirm by finding it. (Advice from uncle: make sure they clean it well between the two scopes!) Chemo in my future. Also, the family has arrived en masse!! :D"
Friday, 1st July 2011 Happy Canada Day! There was actually a little card on one of my meal trays to mark the occasion, a nice touch. I was on "liquids" meal trays for most of my stay, so lots of soup & jello. The food in the hospital was surprisingly good; weeks later when I mentioned that to my psychologist he said that there are some little old Ukrainian ladies who cook at the hospital & make it much better than most institutional food.
The day was taken up with visiting. My family worked out shifts of sorts so they weren't all there at once. They also insisted on cleaning our house. It was hard for me to accept this help. I'm a lousy housekeeper at the best of times, and the month leading up to my hospital stay was far from my best of times. I was ashamed. But I knew they were all feeling helpless, and wanted badly to have something helpful to do, so I let them. Later when thanking them, I would manage to choke out, "Thanks for not thinking less of me."
There was also a surprise visit from Dr. Wankling, who stopped by on his day off because he wanted to bump up my scopes to the first possible day, Monday. Given this bump, and the fact that they were still having trouble finding the right dose to control my pain, it made more sense to keep me in the hospital until after the scopes were done. I would have the prep on Sunday & be scoped first thing Monday.
I think this was my bad night. I know my bad night was the first night after the catheter was removed, and I think this was it. It was in the wee hours, and I woke up & had to pee really badly. They had taken the catheter out but I was still getting IV fluids. But before I could get out of bed I had to release the cuffs around my shins. They were velcro, and I was able to rip one open & off, but couldn't manage to reach the other one (I was not so bendy after abdominal surgery). I would have pressed the call button to get the nurse, but it was tied to the bed rail which had been lowered, and I couldn't reach that either. I started to call to Sterling to wake up, but after three tries I realized that while I was trying to wake him up, I was also trying to do it quietly enough so as not to wake him up, because I felt bad about disturbing him. By this time I was in tears, partly from the pain, partly from panic. I finally managed to wake Sterling up, he took off the cuff and helped me up & to the toilet, and then went to get the nurse because at this point I was hysterical, bawling my eyes out & apologizing over & over. The nurse came in & gave me pain meds & helped calm me down. Looking back now I realized that this was the terror & horror of my finding out I had cancer finally coming out. I had been so HIGH and upbeat for my constant stream of visitors, I hadn't really had time for the negative emotions to surface. This was the start of them coming out.
Saturday, 2nd July 2011 More visiting. Looking at it now, it seems like I should have been bored with not being able to do anything but lie in bed & visit, but I don't remember it that way. I do remember getting worn out but not wanting to nap because I wanted to make the most of my visiting time with my family, at the same time that they were insisting I should rest & nap.
I wasn't in bed all the time, I was also getting up & doing laps around the floor, pushing my IV pole. There was a big front pocket in my hospital gown, which I'm sure was designed to hold some piece of medical equipment, but I used it to take along the little stuffed hamster a friend had brought me. I named the stuffed hamster Ponyo, an obscure reference to the titular character who loves ham (ham - hamster - get it?). The getting out of bed & moving was something that was greatly encouraged by the nurses, as it prevents blood clots & speeds recovery time. I joked they should post the best times around the floor, I was sure I could beat them! I was a bit annoyed because even though I was the most mobile patient on the floor, I was still getting the little belly shots to prevent clots. At some point a nurse finally told me she thought it was an oversight that the doctors hadn't stopped the shots, and I could refuse them, which I started doing.
I guess this as good a place as any to put in some other details that happened but I'm fuzzy on when exactly. At some point the IV in my right forearm started leaking, so they had to put in a new one. I have itty bitty veins that run & hide from needles, so this was a challenge, and it took two nurses three tries to get a new IV in. They finally succeeded with a child's needle & put the IV in my left hand, which sucked, because the IV in your hand is awkward to deal with for things like washing your hands. Also at some point I was strong enough to get my arm wrapped & taped in plastic & have my first shower. That wonderful feeling after being sick in bed for days & finally feeling well enough to bathe - heaven!
One last thing about being in the hospital: they had a wonderful machine that kept hot blankets. I loved them - they were so comforting. The nurses showed Sterling where to get them & help himself, and I was indulged often.
Sunday, 3rd July 2011 My brother, his girlfriend, and my stepmom all have to leave to drive back to Calgary - they have to work on Monday. We take pictures like these before they go:
We all look so happy, you would think the teddy bear (a loan not a gift from my brother's girlfriend) was a baby & we were all gathered at the hospital for a happy occasion, rather than for a life-threatening disease.
After a last visit with the three who had to leave, and hugs & goodbyes, the nurse comes in with the first bottle of super-laxative stuff to prep me for the scopes the next day. I have a first dose, followed by a second dose in two hours. My mom asks, why two different doses? The nurse can't really explain why, but afterwords, I will describe it like the space shuttle taking off. You know how they have one engine that burns out, then drops off, and the second one kicks in to take them the rest of the way? That was how I experienced the cleanse. After the first hour, I was like, this isn't going to work, maybe I just don't have anything in my system because of the liquid meals I've been fed in the hospital. After an hour & a half, it finally started to work. After the second dose, oh my goddess! My family kindly stays away for most of the afternoon, as no-one wants to be around for this, except Sterling. Dear sweet Sterling... I worried that after this whole ordeal, there wouldn't be much mystery left in our romance, but he was a rock the whole way through.
Monday, 4th July 2011 Scope day. We kept expecting me to get called downstairs for the scope, but after several hours of the nurses saying "they'll call when they're ready for you" my Dad insists our nurses call them. Turns out there was a paperwork screwup & I wasn't on the list to get scoped that day! My dad had to go for a walk to calm down after that, although I have to say that throughout my hospital stay he controlled his temper & urge to take charge admirably well. I am put on the scope list for the last appointment of the day & the surgeon doing the scopes comes up to talk to me about them. Unfortunately he did not have Dr. Wankling's stellar bedside manner. Have you ever had someone who explains something to you, you ask a clarification question, and they just repeat the exact same thing they said the first time? That was this surgeon. My only real concern was that I wanted to make sure I was unconscious for the scopes... a coworker had an endoscopy (scope down the throat into your stomach) that he was conscious for & did NOT recommend it. Eventually after several go-rounds with the surgeon, it was confirmed that I would be awake enough to respond to their commands to shift & rollover & such, but I would not remember any of the procedure. Good enough for me! I was finally taken down for the scopes mid-afternoon, but as soon as we got there, they claimed they hadn't called for me and I was sent back upstairs, where the nurse said they most certainly did call for me, so yet another communication error had to be straightened out, and I was taken back down again. What a gong show! The actual scopes went fine, I don't remember anything after being sedated until I woke up in the scope recovery room, being encouraged to pass gas (this is an important thing after scopes). I was full of air which was very painful so each burp & fart I managed was a great relief. The surgeon came in & showed me pictures of the big cancerous ulcer they'd found in my stomach, confirming that what I had was stomach cancer that had spread to the omentum (Dr. Wankling had described what he found in my abdomen was like cancerous seeds scattered through my omentum). The surgeon also explained he was only able to do a partial colonscopy; while the scope showed the inside of my colon was clear of cancer, it had likely spread to the outside and because of that he hadn't wanted to be too forceful with the colonscopy, especially since they'd already confirmed that the primary was in my stomach.
I was wheeled back up to my room & was finally allowed to eat something. That had been rough - after the prep solution the previous afternoon/evening, I couldn't eat anything until after the scope, which wouldn't have been such a big deal if it had been first thing in the morning like it was supposed to be, but because of the screwup I spent nearly all of Monday not being able to eat.
That evening we all met my oncologist Dr. Katakkar for the first time. He came up to my room to see me after office hours. He was & is wonderful. He's been a doctor for over 30 years & for 20 years he ran his own clinic in Arizona. He was recruited to come up & head our new northern cancer centre here in Prince George just this past January (news article). He is a sweet little East Indian man who always sports a bowtie. His youngest daughter is the same age as I am. He very patiently answered all our questions (facing not only me, but a questioning family panel of Sterling, my Mom & Dad, and my sister & brother-in-law). We all felt like I was in good hands with him.
Dr. Katakkar explained that the file he received was incomplete, so he wasn't sure at this point if I had lymphoma that had spread into my stomach, or stomach cancer that had spread to my lymph nodes. He was hoping it was the first one, as lymphoma is much easier to treat & my odds would be much better. If it was the latter, then I would also need to be tested for a mutant gene that about a quarter of stomach cancers are positive for. If I was positive for the mutant gene, that would also increase my odds. He also explained that whichever it was, my cancer was stage IV, which provoked a strong emotional reaction from us all, even though if we had thought about it we should have been able to figure that out for ourselves.
I immediately decided to harness the power of positive thinking, deciding that it was definitely lymphoma. At 8:19PM that night I updated my FaceBook status to: "OK everyone, I need your help! Today I was scoped from both ends, and as expected, they found the primary cancer in my stomach. There are 2 possibilities: it's either lymphoma that happens to be in the stomach, or actual stomach cancer. We REALLY want it to be lymphoma; it is more common and more treatable. So please if everyone could pray/vibe/fingers crossed for lymphoma. Should know tomorrow. Thanks!!"
Tuesday, 5th July 2011 First thing in the morning, Dr. Katakkar came in & gave us the news: I have stomach cancer, not lymphoma. Fuck. I started crying really hard - I was devastated. Brokenly, I said, "I was really hoping to catch a break." Dr. Katakkar gave me a hug & said, "We just all have to do the very best we can." I bounced back reasonably quickly... yay narcotics! Dr. Katakkar is going to get me downstairs for my first chemotherapy right away, within hours. Later, my Dad will talk with other experts & they all say this is amazingly quick, but Dr. Katakkar has the sense of urgency about him, "there is no time to waste!" that I craved & never got from my GP. But first, I say my goodbyes to my sister, her husband, and my dad, who are driving back to Calgary. Sterling heads home to shower, and my mom & "chemo kitty" (a stuffed cat that a coworker brought me) accompanies me downstairs for my first chemo. My mom was supposed to fly out the next morning, but after talking about it she decides to change her flight to a day later, so she can stay until I am discharged tomorrow. They have decided to keep me in the hospital one more night so that they can observe me for any adverse reaction to the chemo.
The chemo I receive is the GIGAVECC protocol. Even though I already have an IV in my left hand, the cancer nurse insists on putting in her own. The good news is, chemo nurses have a reputation as being the very best at putting in IVs, and she gets it first time. First I get a cup full of anti-nausea pills. I am pleasantly surprised to learn that science has come a long way, and rather than puking for a week after chemo, the goal is that we find the right combo of anti-nausea drugs so I never experience nausea at all! My right arm with the new IV is wrapped in an electric blanket, while the nurse uses a huge syringe of bright red liquid to slowly push the first chemo drug Epirubicin. I am asked to tell her immediately if I feel any pain, because if the drug leaks out of my vein it will cause serious burns under my skin. Yikes - I struggle to not develop hypochondriac pain through the power of suggestion. Fortunately, the nurse also warns me that this drug turns your next pee bright red, otherwise my first trip to the bathroom after receiving it would have been very shocking! Next I get a bag of saline, followed by the Cisplatin. The final of the three chemo drugs, Capecitabine, is four pills a day, two with breakfast & two with dinner. I'm given a three week supply in three fancy blister-pack books. I'm to take my first dose with tonight's dinner, and my last with breakfast the morning before my next chemo session.
Not long after I am setup with the chemo, who should come by to see me but my GP. I was so stressed out seeing him, and I fired him. I told him that trust is very important, and that the way everything played out, I just couldn't trust him anymore, and that one of my coworkers had offered to help me find a new GP. He seemed very hurt & after we spoke he spent quite some time at the nurses station a few feet away filling out paperwork. I was very uncomfortable & couldn't look at him. I just held Sterling's hand & he kept having to reassure me that I had done the right thing. Months later I am still currently without a GP but am still convinced that this was the right decision for me to make. The very thought of the man promotes a negative emotional reaction throughout my body, not exactly conducive to healing! For now, the BC Cancer Agency has taken great care of me.
My first chemo session was also serious information overload. It was explained to me that the BC Cancer Agency has five professions that work as a team: doctors, nurses, pharmacists, nutritionist, and social workers. The last three all stopped by during the chemo to introduce themselves, what there role was in my treatment, and hand me a pile of paper to read. I ended up creating a whole binder I entitled my "Cancer Ass-Kicking Manual" for all this stuff.
Later that evening, after my mom had gone back to my house for the night, I felt so great (aka HIGH) that Sterling said if he hadn't seen the drugs administered for himself, he'd not have believed I'd had chemo. When we went for our evening walk, I decided to leave the floor for the first time. I wanted to see the Tim Hortons everyone kept disappearing to. As we walked past the main entrance to the hospital, I looked out and saw 15th avenue, and had the most surreal moment. That's a street I regularly drove home from work along. It felt like a whole other life, an alternative universe, but really it was only a week ago, and there it was right outside, just beyond the glass from this strange new life, this rabbit hole I'd fallen down.
That night at 7:57PM I updated FaceBook with: "Well, it's stomach cancer, not lymphoma. That's OK, just means a more epic battle & more glorious victory! Had my first chemo treatment this morning (11AM-4PM) and it wasn't too bad! Amazing team of doctors, nurses, social workers, nutritionists, and pharmacists in oncology... information overload, lots of handouts to read as homework. Kicking cancer's ass: I've started!"
Wednesday, 6th July 2011 Dr. Katakkar wants me to have a ECG (electrocardiogram) before I'm discharged, but the department won't return his phone calls. He seems quite frustrated, I think because he is used to running a clinic in the states, where when he wanted something, it was simply done & right away. Because I'm going to be discharged soon, I am moved from my private room to a shared room. I am finally eager to get home. Eventually it is decided that I'm not getting in for an ECG any time soon, so I'm free to go. Discharged, a disgusting sounding word for a lovely thing. We pack up all my stuff to move out, and I give the lady in the other bed my box of the good Kleenix a visitor had brought me & I wish her luck.
Before heading home we have to make a stop at London Drugs to fill my anti-nausea prescriptions. Then it's home... which is so clean thanks to my family that it's barely recognizable! I am glad to be back in my own space, and to see my kitties. Home, there really is no place like it.
Thursday, 7th July 2011 Mom's plane leaves at 6AM, so counting back we have to get up VERY early to take her to the airport. Both Mom & Sterling think I should get more sleep & not come to the airport, so I agree that we'll see if I'm up or not when they leave, and we say our goodbyes the night before just in case. But I'm awake, and insist on going to the airport. Later that day, at 12:54PM I update FaceBook: "I'm HOME! Discharged from the hospital yesterday afternoon. Trying to settle back into my space. The chemo seems to be kicking in, very tired today, slept most of the morning." Then at 6:54PM that night "FANTASTIC NEWS! 25% of patients with stomach cancer have a particular mutant gene. If you have it, they can add a targeted gene therapy to your chemo that improves your odds. My oncologist left a message this afternoon: I have it! :D Extra-sweet bonus: I'm a mutant, which means practically an X-Man, right?!"
So that's it, the story of my hospital stay! I have one more historical catchup post planned to bring my story completely up-to-date, and then I can actually blog "in the moment" which I think will be easier & more therapeutic for me. As always, thanks for reading!
27 August 2011
RIP Jack Layton
Jack Layton's funeral is today. For any non-Canadians reading, he was a Canadian politician, the Leader of the Official Opposition, and the public mourning for him has been nearly unprecedented. Jack inhabited the far side of the political spectrum from me, but like many (most?) Canadians I admired him a great deal. He always came across as a real person who was passionate & hard working for what he believed. Jack was consistently voted the politician people would most like to have a beer with. He will be greatly missed.
Jack's death on Monday hit me hard, as it did many Canadians. I can only speak for myself, but I suspect it was an especially hard blow for those of us who are also battling cancer. Cancer is so scary because it brings you face to face with your mortality. The universe reminds you loud & clear that ultimately none of us control whether we live or die. But that's really too terrifying to cope with on a day-in, day-out basis, so our brain plays tricks to cope, tries to justify & make rules that if we follow, we can avoid the same fate. The one my brain has grasped onto throughout my treatment is, positive attitude! If I am determined enough, I will beat this. But I could never even hope to match Jack Layton's bulldog tenacity and joie de vivre... and he still lost his battle. The cancer didn't care, and he died anyways. Talk about disheartening.
Which has brought me back to face the sad fact that in spite of the best possible treatments, positive attitude, support & prayer, there is still a large portion of whether any individual cancer patient lives or dies that is simply fate or destiny. I suppose if I was less spiritual I would say "random chance", but I require meaning to get through my days.
In Jack's final letter to Canadians he made special note to address folks in my position:
"To other Canadians who are on journeys to defeat cancer and to live their lives, I say this: please don't be discouraged that my own journey hasn't gone as well as I had hoped. You must not lose your own hope. Treatments and therapies have never been better in the face of this disease. You have every reason to be optimistic, determined, and focused on the future. My only other advice is to cherish every moment with those you love at every stage of your journey, as I have done this summer."
This note means a lot to me. I think it, like the rest of his letter, shows who Jack Layton was as a person. And it struck me last night that the inspiring lesson I can take from Jack Layton is this: he never let cancer define him. He dealt with it the best he could & kept on living his life, right up to the end. Each of us brings a unique weapon to our battle with cancer: ourselves. We fight cancer by not letting it take our identity & who we are from us. Jack was Jack right up to the end. In that sense even though he lost his battle, in a larger sense he won the war. I will continue to fight my own battle with openness, honesty, probably over-sharing way too much information, and my sense of humour intact. Cancer has changed a great deal about my life, but I will not allow it to change who I essentially am as a person. In that sense, I too have already won... whatever the outcome.
Jack closes his final letter to Canadians with:
My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we'll change the world.
Lets. Goodbye Jack. I hope you can see the CN Tower blazing orange today in your honour, and that it makes you smile. We miss you.
Jack's death on Monday hit me hard, as it did many Canadians. I can only speak for myself, but I suspect it was an especially hard blow for those of us who are also battling cancer. Cancer is so scary because it brings you face to face with your mortality. The universe reminds you loud & clear that ultimately none of us control whether we live or die. But that's really too terrifying to cope with on a day-in, day-out basis, so our brain plays tricks to cope, tries to justify & make rules that if we follow, we can avoid the same fate. The one my brain has grasped onto throughout my treatment is, positive attitude! If I am determined enough, I will beat this. But I could never even hope to match Jack Layton's bulldog tenacity and joie de vivre... and he still lost his battle. The cancer didn't care, and he died anyways. Talk about disheartening.
Which has brought me back to face the sad fact that in spite of the best possible treatments, positive attitude, support & prayer, there is still a large portion of whether any individual cancer patient lives or dies that is simply fate or destiny. I suppose if I was less spiritual I would say "random chance", but I require meaning to get through my days.
In Jack's final letter to Canadians he made special note to address folks in my position:
"To other Canadians who are on journeys to defeat cancer and to live their lives, I say this: please don't be discouraged that my own journey hasn't gone as well as I had hoped. You must not lose your own hope. Treatments and therapies have never been better in the face of this disease. You have every reason to be optimistic, determined, and focused on the future. My only other advice is to cherish every moment with those you love at every stage of your journey, as I have done this summer."
This note means a lot to me. I think it, like the rest of his letter, shows who Jack Layton was as a person. And it struck me last night that the inspiring lesson I can take from Jack Layton is this: he never let cancer define him. He dealt with it the best he could & kept on living his life, right up to the end. Each of us brings a unique weapon to our battle with cancer: ourselves. We fight cancer by not letting it take our identity & who we are from us. Jack was Jack right up to the end. In that sense even though he lost his battle, in a larger sense he won the war. I will continue to fight my own battle with openness, honesty, probably over-sharing way too much information, and my sense of humour intact. Cancer has changed a great deal about my life, but I will not allow it to change who I essentially am as a person. In that sense, I too have already won... whatever the outcome.
Jack closes his final letter to Canadians with:
My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we'll change the world.
Lets. Goodbye Jack. I hope you can see the CN Tower blazing orange today in your honour, and that it makes you smile. We miss you.
"Courage my friends, 'tis never too late to build a better world." ~Tommy Douglas
(one of Jack's favourite quotes,
included in his email signature)
(one of Jack's favourite quotes,
included in his email signature)
10 August 2011
Diagnosis
This is the story of my diagnosis. During my hospital stay, I told all my visitors some version of this story. It was quite cathartic to tell it over & over, in varying pieces and level of detail. My intent is for this blog post to be the master, every-super-gory-detail version. For posterity, I guess. It's hard to believe all this took place less than two months ago. I suppose in some ways it was also a lifetime ago.
Late in May 2011, I had a stomach ache. Can't say when it started exactly. Probably THE most common medical complaint, right? Everyone gets them. Though statistically I've probably had more than my fair share (see previous post).
The point is, this was not one of my normal stomach aches. Not the (rare for me, Mom & Dad!) "oh goddess if-I-could-puke-I'd-feel-better" hangover stomach ache. Not the "oh goddess why-can't-men-go-through-this-just-once" dull achy menstrual pains stomach ache. And not my nemesis, the "oh goddess outta-my-way" mad rush to the bathroom, diarrhea explosion, stomach ache.
No, this stomach ache was a sharp stab in the upper left of my abdomen that radiated out so that when it got bad my entire midsection was in agony. The pain was wave-like, cresting and waning, and yet never totally gone.
Thursday, 2nd June 2011. First time I sought medical attention for the problem. I'd had the pain fairly steady for a couple days at this point. I was sleeping with my trusty heating blanket every night, and I remember after three nights in a row saying to myself, this isn't normal, something's wrong. It was lunchtime & I was sitting at work, already having taken the maximum recommended dose of Tylenol for the day. (Normally, I'm one of those people who is stupid-resistant to taking over-the-counter painkillers... in absolute agony until some wiser head scolds me & says, just take something already!)
I thought about driving myself over to the emergency room, but when a wave of pain hit, I was gripping the edge of my desk in tears, and I couldn't bear the thought of waiting in emergency for hours alone, so I called my Sterling & asked him to come take me. While waiting, when the pain would fade, I would start to feel really silly, like I was wasting everyone's time & a spot in triage, because it wasn't really that bad. But then the pain would crest again, and I couldn't bear it, needed it to stop.
The wait ended up being not as bad as initially feared, maybe two hours. We got called back & I was put in a bed. The first guy to examine me (a nurse? med student? don't know) thought I might be FOS (Full Of Shit) - constipated. Told him I was a bit, but even when I went, it relieved a bit of the pain but definitely didn't get rid of it. Then a young female doctor came in... younger than my 32 years. She was absolutely convinced it was menstrual cramps (my period started the next day). The other reason for thinking this was that over the previous several months, since I'd made my major diet change, my menstrual cramps did seem to have been getting worse each month. Still, I told her I had never been someone who had bad menstrual cramps before. She said sometimes when we get older that changes. I got a lot of mileage out of that line over the next couple weeks!
The doctor talked about how Advil was a great drug, people just didn't take enough of it. She prescribed a whack of Navoproxen, which she described as "super Advils", each one worth 4-5 regular over-the-counter pills, and implied that if I had to go a little over the maximum dose, that was OK. Finally, the doctor closed by saying that even though she was sure it was menstrual cramps, she would refer me for an ultrasound just to be on the safe side.
We went to London Drugs, filled the prescription, and Sterling took me out for a late-late lunch, since the pills had to be taken with food (rough on the stomach). Then it was back to work for a couple hours, popping my new pills.
Earlier that same day, before the pain got so bad, I had called & made an appointment with a naturopath. As explained in my last post, back in December I made a major diet change, and now I was thinking that given the timing, these weird stomach pains were probably not a coincidence. The naturopath I'd seen in December was a man, but his wife is also a naturopath & they work in partnership, so I made this appointment with her. Normally gender is not a concern of mine when it comes to medical care, but if it was menstruation-related, I thought it'd be better to see a woman. The appointment was for the following Monday. I spent the weekend taking my pills, which helped a little, but even with them I was still in quite a bit of pain.
Monday, 6th June 2011. The naturopath listened to my story, including my visit to the emergency room & their diagnosis. First, given the location of the pain (upper left abdomen), she wanted a standard blood test to rule out problems with my pancreas. She could do it, but it would cost me money, so she recommended I go to my GP & get it done by him at no cost.
Assuming my pancreas wasn't the problem, she also went from the assumption that it was menstrual cramps. We went through what I ate (mostly crap in her opinion) and she prescribed a multivitamin, a cod liver oil pill, and a calcium/magnesium supplement (apparently deficiencies of these two minerals can cause inefficient shedding of the uterine lining & therefore very painful menstrual cramps... the more you know). She also asked that I track my waking temperature for a month, the pattern of which would allow her to eliminate thyroid problems as a cause. Last, she tried a magnesium push, an injection... if a lack of magnesium had been the sole cause of very painful menstrual cramps, this would have eliminated all of my pain instantly. The injection simulates a hot flash... an interesting experience, and one that gave me great sympathy for all the women I love who are going through menopause. But it didn't fix my pain.
Emotionally, I had very mixed feelings after my appointment with the naturopath. On the one hand, I felt better that (unlike the ER doctor) she was trying out ideas, looking for an actual cause, rather than prescribing pills to treat the symptoms only. But her reaction to my crappy diet & the idea that it was probably a vitamin/mineral deficiency of some kind meant that I'd probably done this to myself & had no one but myself to blame for the whole mess. There was more than a little calling myself a dumbass at this point.
I went back to work & made an appointment with my GP. Soonest I could get in was the following Monday. The rest of my week was eventful for non-illness reasons. My boss & I went for a long coffee the next day to conduct my annual performance review... I'm sure it doesn't surprise any of you that he thinks I do an awesome job, right?! ;) Ironically, we even discussed my health issues & all the work projects I'd be getting done once my health was better. Best laid plans.
I had the rest of the week (Wednesday to Friday) off work to study. I'm enrolled in the CGA program & had a finance exam Friday night I'd been trying to prepare for. My cat Bob was just recovering from being very sick himself (more irony: at one point we thought *he* had cancer). Point is between Bob being sick & then me, I didn't hold out much hope for the exam. I studied as much as I could through the pain & wrote the exam Friday at 6:30PM. Was just glad to be done with it, even though I was 70-30 I'd failed. (I found out recently that I managed to pull a rabbit out of my um, orifice, and actually passed! Yay me!)
Sterling picked me up after the exam at 9:30PM & we drove to Williams Lake for the night. We had long-standing plans to do a whirlwind trip to Kelowna that weeekend, as Sterling's extended family was having a big bash for his Uncle Rick's 50th birthday. We would have gone down earlier & spent more time if not for my exam. We spent Saturday night in a camper in Kelowna and after a quick lunch with Sterling's biological father, and an even quicker visit with his paternal grandmother, we were headed home again, as I had to work on Monday.
I felt bad, because I wasn't much fun the whole trip. In spite of the ER doctor's pills, which by the drive back were being interspersed with extra-strength Tylenol, I was in more and more pain. We got home to Prince George in the wee hours Monday morning... so grateful to see my own bed & my heating blanket. I couldn't wait for the doctor's appointment later that day.
Monday, 13th June 2011. My first appointment with my GP over this whole mess. In my head, I'd gone over & over exactly what I was going to say, explaining my symptoms rationally. Instead, the doctor walked in the room, asked how I was feeling, and I burst into tears. The constant pain had worn me down that much already. My GP was awkward, asked if I was worried that it was something serious. I nodded, not really able to speak. I had the impression he was humouring me, and/or just trying to get the crazy crying lady out of there ASAP. He ordered blood & urine tests, and an x-ray. I asked him about the ultrasound the emergency doctor had referred me for, and he said yes, go ahead and book that as well. When I mentioned that I was way over the recommended dose of the Navoproxen, and interspersing it with Tylenol, he prescribed me T3s. He told me to book an appointment within the next couple days to get the test results back, but when I went to do that, the soonest his staff was able to book me was the following Monday, which sucked.
I went downstairs to the lab to get the blood/urine tests done immediately before returning to work, but the lineup was ridiculous & not moving at all. Since it would be a week till I could get the results anyways, I decided to come back first thing the next morning & try to get it done before work. I was starting to stress a little about how much work I kept missing for all these doctor appointments (especially combined with the fact that even when I was there, I was less-than-optimally productive because of the pain). I did go across the hall & get the x-ray done though, since I was able to get in quickly for that. I had never had an x-ray before, other than dental ones, but it was quick & easy… I changed into a hospital gown, lay down on the table, snap, snap, done.
I then stopped to fill the T3 prescription on my way back to work. I'd only ever taken a T3 once before, more than a decade earlier after getting my wisdom teeth removed. I remember it knocking me on my ass, and was nervous about driving while under their influence, so waited until I got back to work to try them. They did make the pain more bearable, but didn’t seem to make me high. I remained cautious about taking them directly before driving for quite a while after that though.
Once back at work, I took my T3s and called to book the ultrasound. The ER referral hadn’t called me to book it until I was off studying for my exam, and since my appointment with my GP was pending so soon, I had decided to wait & see what he wanted me to do before booking. When I called them now, they chided me for not calling back sooner, as now the soonest they could get me in was early July.
Tuesday, 14th June 2011. As planned, stopped by on my way to work to get the blood & urine tests done, ended up being only a little late to work as a result.
Friday, 17th June 2011. This definitely falls under way Too Much Information (TMI) but I'm determined to be thorough here! The T3s (which I’d been taking two every 4 hours or so, so 8-10 a day) had me so constipated, and Ex-Lax wasn’t working, so on the way home from work I stopped to pick up a few groceries... and an enema. It's hard for me to believe even now that lying on a towel in the middle of the bathroom floor, giving myself my first enema, was no-where close to the worst part of my month. A few minutes later, when I could go, not a lot but a little, I was pathetically grateful for even that little bit of relief from the pain.
Sunday, 19th June 2011.Father’s Day. My Dad becomes the lucky first family member to find out what’s going on, when I call him to wish him Happy Father’s Day, and he’s not home, so I leave a message, and he calls back in a moment when my pain is quite extreme. I end up having a complete crying meltdown on the phone, and have to ask Sterling to call my Dad back to reassure him that I am in fact ok. I’m not really, but I don’t want to worry him (or anyone else).
Monday, 20th June 2011. It had been a long week. Given how angry & frustrated I already was, I knew I was far beyond being able to speak rationally about my pain, so I had Sterling come with me to my appointment. All my test results came back clean. I was a little anemic, but that wouldn’t cause the pain. The doctor asked if I was still experiencing the pain. YES!!! Oh, so we have a little bit of a mystery on our hands, he says. I could have killed him. The next step is the ultrasound. When I told him I had booked it & it was still weeks away, he was unmoved. Sterling asked him if there was anything he could do to move it up, and he said no, probably not. We then asked if there were any other tests that could be done. He said it was possible I would be able to get in for a CT scan faster, and he would refer me for one. The theory at this point is that it could be kidney stones, as some types wouldn’t show up on the x-ray. This made sense to me, given the excruciating pain, and the fact that my paternal grandfather had a history of kidney problems and my younger brother had previously had kidney stones. Painful but nothing really seriously wrong. At no point did the GP ask how I was doing on the T3s. When I went to book a follow-up appointment, again the soonest I could get in was the following Monday, a whole week away. I tell them no thanks, I will call later in the week for a same-day appointment instead. They tell me that’s fine.
Sterling & I drove home, and then I drove the car to work. I was very angry & frustrated with my GP, whom I had never gotten on with particularly well. In the past, when all I’d ever needed him for was my annual physical & birth-control prescription, dealing with him had been a minor frustration, but now I felt very much alone. When I got to work, I found that my Dad had called them & they were now very concerned. I had been keeping them all at least somewhat in the loop as to what was going on, given all the times I kept ducking out for doctor’s appointments. Later that afternoon, I called the hospital and they were able to get me in for a CT scan the next day. Finally, progress & good news! I just had to stop & pick up a bottle of contrast agent on my way home from work. Mixed it up with water that night & divided it up into the three doses: the first several hours before, the second a few hours later, then some to take to the exam and drink right before the scan.
Tuesday, 21st June 2011. Went to work, drank the fowl-tasting contrast precisely as scheduled, and then left to get the CT. For the CT scan they tell everyone that is getting a scan that hour to show up at the start of the hour, and then they call you in for the scan in some mysterious order. When it was my turn, I had to change into a hospital gown, lay down on the machine’s table, and they injected me with a second contrast material. Had a nice chat with the tech, snap, snap, snap, pictures taken, and done & back to work. I had made sure to ask the tech when the results would be ready; she said a couple days. The GP’s office started taking phone calls for a limited number of same-day appointments each morning at 7:30AM, and I decided it was past time to be pushy. I would give them Wednesday, then Thursday morning I would start calling, asking, are my results back? If so, can I have an appointment today to get them?
Thursday, 23rd June 2011. Called my GP’s office at 7:30AM as planned. Find out he is out of town until Monday! This was SO not mentioned to me when I was in their office earlier that week, telling them my intention to call for a same day appointment later in the week! To make matters even worse, I am about to run out of T3s (I didn’t realize until the last minute that my supply was so low, but then remember the doctor hadn’t asked either).
At this point I decide to go to the emergency room after work, with the knowledge that I will have to wait a long time to be seen, but worst case scenario I will get enough T3s to cover me until Monday, and best case scenario, they will have access to the CT results. I call Sterling to let him know not to expect me till late. Got to the hospital at 5:30PM, and settled in with my book. “Peak Performance Principles For High Achievers” by John R. Noe – a classic in the self-help field. Difficult to concentrate, but I get through most of the book before finally getting seen four hours later at 9:30PM.
But Dr. Spooner is well worth the wait. After examining me & using a small ultrasound machine to look at my stomach, he tells me has seen the CT scan, and there are abnormalities. I have fluid in my abdomen & inflammation of the omentum and connective tissues that hold the intestines in place. My what? A later doctor described the omentum as the abdomen’s shock absorber, it is a layer of fatty tissue that folds over your entire abdomen. I ask Dr. Spooner, how unusual is this? How concerned should I be? He says that it could be something minor, or it could be something quite serious, it’s difficult to tell from just this picture. He mentions cancer, asks if there is much family history. I mention that my grandmother died of a very rare cancer, I think it may have been of the connective tissues.
Because I had my blood work & urine tests done at Victoria Medical Building rather than at the hospital, Dr. Spooner doesn’t have access to the results, would I mind if he redid the tests? Not at all! Also, he orders a chest x-ray for reasons I still don’t understand. It is quite late at this point, and I am now going to have to wait around until they can perform all these tests, so I borrow their phone to call Sterling to let him know what’s going on. He comes down to meet me. I mention to Dr. Spooner that my GP has not up to this point seemed very concerned or in any great hurry; he says that’s because the GP hasn’t seen the CT results. Dr. Spooner promises to move up my ultrasound for me, refills my T3 prescription, and asks how I’m doing on them, and prescribes some laxatives to help with the side effects. All in all, as we leave that night, I am more than a little scared... cancer is a scary possibility. But I am also reassured, because at least progress is being made. Dr. Spooner's care and compassion has gone a long way to restore my faith in the system. Yes, it’s been sluggish in response up until now, but I feel that things will now move into high gear.
Friday, 24th June 2011. Same as for the last couple mornings, in spite of taking T3s right before going to sleep, I wake up in excruciating pain, barely able to get out of bed. At 6AM I manage to get up, throw back my last two T3s, and while sitting on the couch waiting for them to kick in, I call my mom to ask about what kind of cancer her mother died from. When my mom answers, she immediately asks what’s wrong. She just does not get phone calls from her kids at 6AM. I tell her my story, she says you must be scared shitless, and I cry and say I’m ok. I was wrong about the cancer that grandma died from, it was one that attacked various vital organs, not connective tissues, like what is inflamed for me. I am a little reassured by this. My mom is upset that I didn’t tell her sooner about what was going on, but I didn’t want to worry her. I promise to keep her posted from here on out.
The previous night after getting home, since I only had a few T3s left, I googled which pharmacy was open earliest. I stop at Shoppers Drug Mart and wait for them to open, fill my prescription for T3s and for the over-the-counter laxatives Dr. Spooner recommended, and then stop at the Ritz Bakery on my way to work. I buy a big box of pastries for my coworkers, hoping to bribe karma or something.
The ultrasound people call before 9AM and book me for that very afternoon. I love Dr. Spooner even more! They instruct me about how much water I have to drink starting pretty much right away in order to ensure I have the full bladder required for the ultrasound, and I start chugging it back. Shortly after speaking with them, low & behold my GPs office calls, the CT results are back and they want to book me for a follow-up appointment on Monday afternoon. I tell them about my emergency room visit & that I am also getting an ultrasound done that afternoon.
Ultrasound time. Between the pain & the full bladder, I’m in agony, but I managed to drive myself to the hospital, and check in at the correct place. Every second in the waiting room is awful, trying to hold it all in. The ultrasound technician is so nice, but can’t get a clear view of one of my ovaries. She says she wants to do an internal ultrasound, and the good news for that is I get to empty my bladder first! Hallelujah! I pee and then we do the internal ultrasound, which involves the camera wand in my vagina. Still much more comfortable than the regular ultrasound with the full bladder. Towards the end of the test the doctor comes in to take a look and speak with me, since this was a referral from emergency. I guess the most common cause of my symptoms would have been ovarian cancer, but there are no signs of any tumors or anything on any of my lady bits. They do see on the ultrasound the same inflammation and fluid that the CT scan picked up. She tells me the same thing Dr. Spooner did the night before, that the next logical step will likely be a surgical referral for some biopsies. Still, no sign of anything serious on the ultrasound is good news, and I'm so glad to be making progress towards finally finding out what's wrong with me.
I head back to work, and then on to the weekend. The weekend is long, and in spite of the T3s I am in a lot of pain. Several times Sterling asks me if I want to go back to the emergency room (Dr. Spooner told me to come back if anything changed) but I tough it out. I am sure that come Monday my GP will leap into action. I am determined to follow the proper process.
Monday, 27th June 2011. I call at 7:30AM and have my afternoon appointment moved to the morning. Again Sterling accompanies me. The doctor comes in and tells me the same things about the CT results that Dr. Spooner already covered. Then he brings out the form to move up the ultrasound. I tell him I had the ultrasound on Friday. What, really? He tries to look up the results online, but they’re not available yet. He leaves the room to call for an oral report. When he comes back, he confirms what everyone else has been saying, the next step is as surgical referral for biopsies. He has a great surgeon he usually works with. Sterling asks, this isn’t going to take weeks, right? She’s in so much pain. The doctor reassures us that no, if his preferred doctor can’t get me in right away, he will refer me to someone else instead. OK then. Sterling points out that the T3s are barely taking the edge off. The GP agrees to move me up to morphine. Although, he says, I can’t expect to get rid of all my pain. He can probably cut it down to 30%. He writes the prescription for morphine, we go to get it filled, and I intend to go from there into work. In spite of all the time off for doctor’s appointments, and definitely being less effective from the pain, I have been working though out this entire ordeal up until now. Sterling puts his foot down and says no, I’m not going in today. He says I have no idea how I’ll react to morphine. Fine, fair point. We do stop by the office to fill them in on what’s going on and that I won’t be in. As we’re about to leave my office, my phone rings. It is the surgical consult. They can book me for the consult only on Thursday afternoon. This is before Canada Day Friday long weekend. It’s going to be at least a week before any more progress is made! Numb, I agree to the appointment, and head home. Take the morphine through out the day as prescribed. It does nothing more for my pain than the T3s did, except I now have a splitting headache too. I call all my family to fill them in on what’s going on. They are all also outraged and disappointed at the long delay. Sterling is working that night and has an out-of-town call; I stay up until he gets home. It’s nearly midnight as we head to bed. He tells me afterwards that I looked like death. We’re lying in bed, me propped up with several pillows, in so much pain, and I very softly whisper, hon, I’m almost thinking…never mind. Sterling asks, no, what is it? I was just thinking maybe we should go to the emerg… I never even got to finish the thought, Sterling was out of bed, the light was on, and he was helping me into my clothes. That was all he'd been waiting for.
Tuesday, 28th June 2011. We arrive in the emergency room after midnight. At check-in I mention that I was there last Thursday night and saw Dr. Spooner, the nurse says on he’s on again tonight, and I instantly feel better. In spite of the hour we still have to wait a few hours before being seen. We got quite the show while waiting though. First an RCMP officer brings in a young kid, who keeps trying to run off. Then another guy comes in escorted by four RCMP officers. When we’re finally taking back and I’m put in a bed, we see Dr. Spooner again and I fill him in on everything. He tells me he’s going to keep me overnight, give me something for the pain, and I’ll see the surgeon first thing in the morning. Have I mentioned how much I love Dr. Spooner?! The nurse comes by, puts an IV in my right arm (difficult to do with my little veins that like to play hide-and-seek, but she manages on the first try) and through the IV they give me Gravol (which I had once before years before and it puts me out like a light) and something wonderful called Dilaudid. Shortly after they put this stuff in my IV, I’m holding Sterling’s hand looking at him grinning and saying “Wow. Oh, wow.” Over and over. It’s the first time in a month I’m not in pain.
Sterling wants to stay, but by now it’s 4AM and I tell him he’ll be better able to help me if he goes home and gets some sleep. Besides, I’m finally feeling no pain! Sterling reluctantly leaves and I manage to get several hours sleep.
The next morning I have to wait in the ER for quite a while. Sterling comes back, with his Timmy’s, to the envy of the staff. I can’t have anything to eat or drink at all, not even water, because they are going to get me into surgery as soon as possible. Two young interns come by who are going to be involved in the surgery and speak with me about it. Finally I meet the wonderful Dr. Wankling, my surgeon, and he explains that he is going to do a laparoscopic surgery to get the biopsies. Looking back on it now, I can't believe I wasn't more nervous about having surgery, but I was just so tired of the pain. Eventually I get wheeled upstairs for a short bit, where we wait for a bit. I say goodbye to Sterling as they wheeled me off to surgery, where I’m put under.
I wake in recovery, in so much pain. I later discover they have me back on morphine rather than the Dilaudid that actually worked the night before. Ice chips are heaven. Once I calm down a little, they wheel me upstairs, where I’m reunited with Sterling... and given a private room. Later, Sterling will tell me this is when he first figures it’s something serious, because most of the rooms in the post-surgery ward are doubles. I don’t think anything of it though, because I’m still in massive amounts of pain. They keep trying to control it with morphine, and it’s just not working. I end up rambling to Sterling, hon, I can’t do this, I can’t stand this, I can’t, I can’t, I can’t. I tell the nurses about how the morphine pills didn’t work and that the stuff they gave me in the ER did work (I couldn't remember the name Dilaudid). They switch me over to the Dilaudid, and the pain while not gone starts to become controlled. Now we’re just waiting for Dr. Wankling, who will come talk to us as soon as he gets a chance, he just had a lot of surgeries that day. So we wait. It’s getting close to 5PM so I call my work and let them know I won’t be in again tomorrow. (Sterling had called the previous night when he got home & left a message that I wouldn’t be in that day.) The CEO calls me back and tells me to call as soon as I get the results. We also call my mom & dad to update them on what’s happening, as the last they had heard I was going to have to wait at least a week before surgery. Since it’s Tuesday, Sterling’s work shift starts and he gets an in-town call-out. He puts it off as long as he can, but then has to leave. Of course, shortly after he’s gone is when the surgeon finally comes in.
Dr. Wankling fortunately has the best bedside manner. He doesn’t pull any punches though: they found cancer in my omentum. They took biopsies which are currently being analyzed, but he has seen one other virtually identical case years ago, and in that case it was stomach cancer that had spread to the omentum, and he suspects that’s what’s happened in my case too. He asks about calling Sterling, but I tell him Sterling will be back soon. He tells me to have the nurses page him to come talk to Sterling as soon as he gets back. He tells me he is going to call my parents, what’s their numbers? I hand him my little red book, point them out, and he leaves to make the calls.
I’m in shock, and for a good ten to fifteen minutes, absolutely terrified. Cancer! Oh god, I’m going to die. I don’t want to die! But soon a sense of absolute calm descends, and I just know: I’m not going to die. This is going to change everything, but I am going to survive, and thrive. This is going to suck, but it will be a massive learning & growth experience. I’m going to be OK.
I’m so glad this feeling arrived when it did, because it put me in the right place mentally to comfort Sterling & my family. As it turned out, after Dr. Wankling called my Dad, Dad immediately called Sterling, who was done his call and on his way back to the hospital. My Dad of course didn’t want to break the news to Sterling over the phone that way, but Sterling knew from the tone of my Dad’s voice that something was very wrong, and insisted. Of course, when Sterling had left they had been just starting to control my pain, and fresh in his mind is all my "I can’t live like this.: So of course he arrived in my hospital room very very upset, telling me that he needs me & I had to fight this, and I was able to reassure him and calm him down.
Then I started calling. I called my best friend Mandy, so she could let all our circle of friends know what was going on. Then I tried to call the CEO, and when she was out of cell phone range called her executive coordinator to make sure work knew. Then I started calling my family: my Mom, my Dad & Stepmom, my brother, and my sister. All so upset. I was able to reassure all of them a bit. Eventually, after all those phone calls, we were so lucky that my private room had a fold-down couch & Sterling was welcome to stay with me. We settled in for the night.
So there, that’s the story of how my life got turned upside down in one short month. I’ll continue on with the story of my hospital stay in my next post. This was a really tough post for me to write; not only is it long & I wanted to include all the details I could, but I haven’t been in the right head space to go back & relive this awful ordeal. But I wanted everyone to know where I’m coming from, and in order to do that you have to know what I went through to get here. Thank you for reading this whole ridiculously long thing - you really should get an endurance medal or something! ;)
Late in May 2011, I had a stomach ache. Can't say when it started exactly. Probably THE most common medical complaint, right? Everyone gets them. Though statistically I've probably had more than my fair share (see previous post).
The point is, this was not one of my normal stomach aches. Not the (rare for me, Mom & Dad!) "oh goddess if-I-could-puke-I'd-feel-better" hangover stomach ache. Not the "oh goddess why-can't-men-go-through-this-just-once" dull achy menstrual pains stomach ache. And not my nemesis, the "oh goddess outta-my-way" mad rush to the bathroom, diarrhea explosion, stomach ache.
No, this stomach ache was a sharp stab in the upper left of my abdomen that radiated out so that when it got bad my entire midsection was in agony. The pain was wave-like, cresting and waning, and yet never totally gone.
Thursday, 2nd June 2011. First time I sought medical attention for the problem. I'd had the pain fairly steady for a couple days at this point. I was sleeping with my trusty heating blanket every night, and I remember after three nights in a row saying to myself, this isn't normal, something's wrong. It was lunchtime & I was sitting at work, already having taken the maximum recommended dose of Tylenol for the day. (Normally, I'm one of those people who is stupid-resistant to taking over-the-counter painkillers... in absolute agony until some wiser head scolds me & says, just take something already!)
I thought about driving myself over to the emergency room, but when a wave of pain hit, I was gripping the edge of my desk in tears, and I couldn't bear the thought of waiting in emergency for hours alone, so I called my Sterling & asked him to come take me. While waiting, when the pain would fade, I would start to feel really silly, like I was wasting everyone's time & a spot in triage, because it wasn't really that bad. But then the pain would crest again, and I couldn't bear it, needed it to stop.
The wait ended up being not as bad as initially feared, maybe two hours. We got called back & I was put in a bed. The first guy to examine me (a nurse? med student? don't know) thought I might be FOS (Full Of Shit) - constipated. Told him I was a bit, but even when I went, it relieved a bit of the pain but definitely didn't get rid of it. Then a young female doctor came in... younger than my 32 years. She was absolutely convinced it was menstrual cramps (my period started the next day). The other reason for thinking this was that over the previous several months, since I'd made my major diet change, my menstrual cramps did seem to have been getting worse each month. Still, I told her I had never been someone who had bad menstrual cramps before. She said sometimes when we get older that changes. I got a lot of mileage out of that line over the next couple weeks!
The doctor talked about how Advil was a great drug, people just didn't take enough of it. She prescribed a whack of Navoproxen, which she described as "super Advils", each one worth 4-5 regular over-the-counter pills, and implied that if I had to go a little over the maximum dose, that was OK. Finally, the doctor closed by saying that even though she was sure it was menstrual cramps, she would refer me for an ultrasound just to be on the safe side.
We went to London Drugs, filled the prescription, and Sterling took me out for a late-late lunch, since the pills had to be taken with food (rough on the stomach). Then it was back to work for a couple hours, popping my new pills.
Earlier that same day, before the pain got so bad, I had called & made an appointment with a naturopath. As explained in my last post, back in December I made a major diet change, and now I was thinking that given the timing, these weird stomach pains were probably not a coincidence. The naturopath I'd seen in December was a man, but his wife is also a naturopath & they work in partnership, so I made this appointment with her. Normally gender is not a concern of mine when it comes to medical care, but if it was menstruation-related, I thought it'd be better to see a woman. The appointment was for the following Monday. I spent the weekend taking my pills, which helped a little, but even with them I was still in quite a bit of pain.
Monday, 6th June 2011. The naturopath listened to my story, including my visit to the emergency room & their diagnosis. First, given the location of the pain (upper left abdomen), she wanted a standard blood test to rule out problems with my pancreas. She could do it, but it would cost me money, so she recommended I go to my GP & get it done by him at no cost.
Assuming my pancreas wasn't the problem, she also went from the assumption that it was menstrual cramps. We went through what I ate (mostly crap in her opinion) and she prescribed a multivitamin, a cod liver oil pill, and a calcium/magnesium supplement (apparently deficiencies of these two minerals can cause inefficient shedding of the uterine lining & therefore very painful menstrual cramps... the more you know). She also asked that I track my waking temperature for a month, the pattern of which would allow her to eliminate thyroid problems as a cause. Last, she tried a magnesium push, an injection... if a lack of magnesium had been the sole cause of very painful menstrual cramps, this would have eliminated all of my pain instantly. The injection simulates a hot flash... an interesting experience, and one that gave me great sympathy for all the women I love who are going through menopause. But it didn't fix my pain.
Emotionally, I had very mixed feelings after my appointment with the naturopath. On the one hand, I felt better that (unlike the ER doctor) she was trying out ideas, looking for an actual cause, rather than prescribing pills to treat the symptoms only. But her reaction to my crappy diet & the idea that it was probably a vitamin/mineral deficiency of some kind meant that I'd probably done this to myself & had no one but myself to blame for the whole mess. There was more than a little calling myself a dumbass at this point.
I went back to work & made an appointment with my GP. Soonest I could get in was the following Monday. The rest of my week was eventful for non-illness reasons. My boss & I went for a long coffee the next day to conduct my annual performance review... I'm sure it doesn't surprise any of you that he thinks I do an awesome job, right?! ;) Ironically, we even discussed my health issues & all the work projects I'd be getting done once my health was better. Best laid plans.
I had the rest of the week (Wednesday to Friday) off work to study. I'm enrolled in the CGA program & had a finance exam Friday night I'd been trying to prepare for. My cat Bob was just recovering from being very sick himself (more irony: at one point we thought *he* had cancer). Point is between Bob being sick & then me, I didn't hold out much hope for the exam. I studied as much as I could through the pain & wrote the exam Friday at 6:30PM. Was just glad to be done with it, even though I was 70-30 I'd failed. (I found out recently that I managed to pull a rabbit out of my um, orifice, and actually passed! Yay me!)
Sterling picked me up after the exam at 9:30PM & we drove to Williams Lake for the night. We had long-standing plans to do a whirlwind trip to Kelowna that weeekend, as Sterling's extended family was having a big bash for his Uncle Rick's 50th birthday. We would have gone down earlier & spent more time if not for my exam. We spent Saturday night in a camper in Kelowna and after a quick lunch with Sterling's biological father, and an even quicker visit with his paternal grandmother, we were headed home again, as I had to work on Monday.
I felt bad, because I wasn't much fun the whole trip. In spite of the ER doctor's pills, which by the drive back were being interspersed with extra-strength Tylenol, I was in more and more pain. We got home to Prince George in the wee hours Monday morning... so grateful to see my own bed & my heating blanket. I couldn't wait for the doctor's appointment later that day.
Monday, 13th June 2011. My first appointment with my GP over this whole mess. In my head, I'd gone over & over exactly what I was going to say, explaining my symptoms rationally. Instead, the doctor walked in the room, asked how I was feeling, and I burst into tears. The constant pain had worn me down that much already. My GP was awkward, asked if I was worried that it was something serious. I nodded, not really able to speak. I had the impression he was humouring me, and/or just trying to get the crazy crying lady out of there ASAP. He ordered blood & urine tests, and an x-ray. I asked him about the ultrasound the emergency doctor had referred me for, and he said yes, go ahead and book that as well. When I mentioned that I was way over the recommended dose of the Navoproxen, and interspersing it with Tylenol, he prescribed me T3s. He told me to book an appointment within the next couple days to get the test results back, but when I went to do that, the soonest his staff was able to book me was the following Monday, which sucked.
I went downstairs to the lab to get the blood/urine tests done immediately before returning to work, but the lineup was ridiculous & not moving at all. Since it would be a week till I could get the results anyways, I decided to come back first thing the next morning & try to get it done before work. I was starting to stress a little about how much work I kept missing for all these doctor appointments (especially combined with the fact that even when I was there, I was less-than-optimally productive because of the pain). I did go across the hall & get the x-ray done though, since I was able to get in quickly for that. I had never had an x-ray before, other than dental ones, but it was quick & easy… I changed into a hospital gown, lay down on the table, snap, snap, done.
I then stopped to fill the T3 prescription on my way back to work. I'd only ever taken a T3 once before, more than a decade earlier after getting my wisdom teeth removed. I remember it knocking me on my ass, and was nervous about driving while under their influence, so waited until I got back to work to try them. They did make the pain more bearable, but didn’t seem to make me high. I remained cautious about taking them directly before driving for quite a while after that though.
Once back at work, I took my T3s and called to book the ultrasound. The ER referral hadn’t called me to book it until I was off studying for my exam, and since my appointment with my GP was pending so soon, I had decided to wait & see what he wanted me to do before booking. When I called them now, they chided me for not calling back sooner, as now the soonest they could get me in was early July.
Tuesday, 14th June 2011. As planned, stopped by on my way to work to get the blood & urine tests done, ended up being only a little late to work as a result.
Friday, 17th June 2011. This definitely falls under way Too Much Information (TMI) but I'm determined to be thorough here! The T3s (which I’d been taking two every 4 hours or so, so 8-10 a day) had me so constipated, and Ex-Lax wasn’t working, so on the way home from work I stopped to pick up a few groceries... and an enema. It's hard for me to believe even now that lying on a towel in the middle of the bathroom floor, giving myself my first enema, was no-where close to the worst part of my month. A few minutes later, when I could go, not a lot but a little, I was pathetically grateful for even that little bit of relief from the pain.
Sunday, 19th June 2011.Father’s Day. My Dad becomes the lucky first family member to find out what’s going on, when I call him to wish him Happy Father’s Day, and he’s not home, so I leave a message, and he calls back in a moment when my pain is quite extreme. I end up having a complete crying meltdown on the phone, and have to ask Sterling to call my Dad back to reassure him that I am in fact ok. I’m not really, but I don’t want to worry him (or anyone else).
Monday, 20th June 2011. It had been a long week. Given how angry & frustrated I already was, I knew I was far beyond being able to speak rationally about my pain, so I had Sterling come with me to my appointment. All my test results came back clean. I was a little anemic, but that wouldn’t cause the pain. The doctor asked if I was still experiencing the pain. YES!!! Oh, so we have a little bit of a mystery on our hands, he says. I could have killed him. The next step is the ultrasound. When I told him I had booked it & it was still weeks away, he was unmoved. Sterling asked him if there was anything he could do to move it up, and he said no, probably not. We then asked if there were any other tests that could be done. He said it was possible I would be able to get in for a CT scan faster, and he would refer me for one. The theory at this point is that it could be kidney stones, as some types wouldn’t show up on the x-ray. This made sense to me, given the excruciating pain, and the fact that my paternal grandfather had a history of kidney problems and my younger brother had previously had kidney stones. Painful but nothing really seriously wrong. At no point did the GP ask how I was doing on the T3s. When I went to book a follow-up appointment, again the soonest I could get in was the following Monday, a whole week away. I tell them no thanks, I will call later in the week for a same-day appointment instead. They tell me that’s fine.
Sterling & I drove home, and then I drove the car to work. I was very angry & frustrated with my GP, whom I had never gotten on with particularly well. In the past, when all I’d ever needed him for was my annual physical & birth-control prescription, dealing with him had been a minor frustration, but now I felt very much alone. When I got to work, I found that my Dad had called them & they were now very concerned. I had been keeping them all at least somewhat in the loop as to what was going on, given all the times I kept ducking out for doctor’s appointments. Later that afternoon, I called the hospital and they were able to get me in for a CT scan the next day. Finally, progress & good news! I just had to stop & pick up a bottle of contrast agent on my way home from work. Mixed it up with water that night & divided it up into the three doses: the first several hours before, the second a few hours later, then some to take to the exam and drink right before the scan.
Tuesday, 21st June 2011. Went to work, drank the fowl-tasting contrast precisely as scheduled, and then left to get the CT. For the CT scan they tell everyone that is getting a scan that hour to show up at the start of the hour, and then they call you in for the scan in some mysterious order. When it was my turn, I had to change into a hospital gown, lay down on the machine’s table, and they injected me with a second contrast material. Had a nice chat with the tech, snap, snap, snap, pictures taken, and done & back to work. I had made sure to ask the tech when the results would be ready; she said a couple days. The GP’s office started taking phone calls for a limited number of same-day appointments each morning at 7:30AM, and I decided it was past time to be pushy. I would give them Wednesday, then Thursday morning I would start calling, asking, are my results back? If so, can I have an appointment today to get them?
Thursday, 23rd June 2011. Called my GP’s office at 7:30AM as planned. Find out he is out of town until Monday! This was SO not mentioned to me when I was in their office earlier that week, telling them my intention to call for a same day appointment later in the week! To make matters even worse, I am about to run out of T3s (I didn’t realize until the last minute that my supply was so low, but then remember the doctor hadn’t asked either).
At this point I decide to go to the emergency room after work, with the knowledge that I will have to wait a long time to be seen, but worst case scenario I will get enough T3s to cover me until Monday, and best case scenario, they will have access to the CT results. I call Sterling to let him know not to expect me till late. Got to the hospital at 5:30PM, and settled in with my book. “Peak Performance Principles For High Achievers” by John R. Noe – a classic in the self-help field. Difficult to concentrate, but I get through most of the book before finally getting seen four hours later at 9:30PM.
But Dr. Spooner is well worth the wait. After examining me & using a small ultrasound machine to look at my stomach, he tells me has seen the CT scan, and there are abnormalities. I have fluid in my abdomen & inflammation of the omentum and connective tissues that hold the intestines in place. My what? A later doctor described the omentum as the abdomen’s shock absorber, it is a layer of fatty tissue that folds over your entire abdomen. I ask Dr. Spooner, how unusual is this? How concerned should I be? He says that it could be something minor, or it could be something quite serious, it’s difficult to tell from just this picture. He mentions cancer, asks if there is much family history. I mention that my grandmother died of a very rare cancer, I think it may have been of the connective tissues.
Because I had my blood work & urine tests done at Victoria Medical Building rather than at the hospital, Dr. Spooner doesn’t have access to the results, would I mind if he redid the tests? Not at all! Also, he orders a chest x-ray for reasons I still don’t understand. It is quite late at this point, and I am now going to have to wait around until they can perform all these tests, so I borrow their phone to call Sterling to let him know what’s going on. He comes down to meet me. I mention to Dr. Spooner that my GP has not up to this point seemed very concerned or in any great hurry; he says that’s because the GP hasn’t seen the CT results. Dr. Spooner promises to move up my ultrasound for me, refills my T3 prescription, and asks how I’m doing on them, and prescribes some laxatives to help with the side effects. All in all, as we leave that night, I am more than a little scared... cancer is a scary possibility. But I am also reassured, because at least progress is being made. Dr. Spooner's care and compassion has gone a long way to restore my faith in the system. Yes, it’s been sluggish in response up until now, but I feel that things will now move into high gear.
Friday, 24th June 2011. Same as for the last couple mornings, in spite of taking T3s right before going to sleep, I wake up in excruciating pain, barely able to get out of bed. At 6AM I manage to get up, throw back my last two T3s, and while sitting on the couch waiting for them to kick in, I call my mom to ask about what kind of cancer her mother died from. When my mom answers, she immediately asks what’s wrong. She just does not get phone calls from her kids at 6AM. I tell her my story, she says you must be scared shitless, and I cry and say I’m ok. I was wrong about the cancer that grandma died from, it was one that attacked various vital organs, not connective tissues, like what is inflamed for me. I am a little reassured by this. My mom is upset that I didn’t tell her sooner about what was going on, but I didn’t want to worry her. I promise to keep her posted from here on out.
The previous night after getting home, since I only had a few T3s left, I googled which pharmacy was open earliest. I stop at Shoppers Drug Mart and wait for them to open, fill my prescription for T3s and for the over-the-counter laxatives Dr. Spooner recommended, and then stop at the Ritz Bakery on my way to work. I buy a big box of pastries for my coworkers, hoping to bribe karma or something.
The ultrasound people call before 9AM and book me for that very afternoon. I love Dr. Spooner even more! They instruct me about how much water I have to drink starting pretty much right away in order to ensure I have the full bladder required for the ultrasound, and I start chugging it back. Shortly after speaking with them, low & behold my GPs office calls, the CT results are back and they want to book me for a follow-up appointment on Monday afternoon. I tell them about my emergency room visit & that I am also getting an ultrasound done that afternoon.
Ultrasound time. Between the pain & the full bladder, I’m in agony, but I managed to drive myself to the hospital, and check in at the correct place. Every second in the waiting room is awful, trying to hold it all in. The ultrasound technician is so nice, but can’t get a clear view of one of my ovaries. She says she wants to do an internal ultrasound, and the good news for that is I get to empty my bladder first! Hallelujah! I pee and then we do the internal ultrasound, which involves the camera wand in my vagina. Still much more comfortable than the regular ultrasound with the full bladder. Towards the end of the test the doctor comes in to take a look and speak with me, since this was a referral from emergency. I guess the most common cause of my symptoms would have been ovarian cancer, but there are no signs of any tumors or anything on any of my lady bits. They do see on the ultrasound the same inflammation and fluid that the CT scan picked up. She tells me the same thing Dr. Spooner did the night before, that the next logical step will likely be a surgical referral for some biopsies. Still, no sign of anything serious on the ultrasound is good news, and I'm so glad to be making progress towards finally finding out what's wrong with me.
I head back to work, and then on to the weekend. The weekend is long, and in spite of the T3s I am in a lot of pain. Several times Sterling asks me if I want to go back to the emergency room (Dr. Spooner told me to come back if anything changed) but I tough it out. I am sure that come Monday my GP will leap into action. I am determined to follow the proper process.
Monday, 27th June 2011. I call at 7:30AM and have my afternoon appointment moved to the morning. Again Sterling accompanies me. The doctor comes in and tells me the same things about the CT results that Dr. Spooner already covered. Then he brings out the form to move up the ultrasound. I tell him I had the ultrasound on Friday. What, really? He tries to look up the results online, but they’re not available yet. He leaves the room to call for an oral report. When he comes back, he confirms what everyone else has been saying, the next step is as surgical referral for biopsies. He has a great surgeon he usually works with. Sterling asks, this isn’t going to take weeks, right? She’s in so much pain. The doctor reassures us that no, if his preferred doctor can’t get me in right away, he will refer me to someone else instead. OK then. Sterling points out that the T3s are barely taking the edge off. The GP agrees to move me up to morphine. Although, he says, I can’t expect to get rid of all my pain. He can probably cut it down to 30%. He writes the prescription for morphine, we go to get it filled, and I intend to go from there into work. In spite of all the time off for doctor’s appointments, and definitely being less effective from the pain, I have been working though out this entire ordeal up until now. Sterling puts his foot down and says no, I’m not going in today. He says I have no idea how I’ll react to morphine. Fine, fair point. We do stop by the office to fill them in on what’s going on and that I won’t be in. As we’re about to leave my office, my phone rings. It is the surgical consult. They can book me for the consult only on Thursday afternoon. This is before Canada Day Friday long weekend. It’s going to be at least a week before any more progress is made! Numb, I agree to the appointment, and head home. Take the morphine through out the day as prescribed. It does nothing more for my pain than the T3s did, except I now have a splitting headache too. I call all my family to fill them in on what’s going on. They are all also outraged and disappointed at the long delay. Sterling is working that night and has an out-of-town call; I stay up until he gets home. It’s nearly midnight as we head to bed. He tells me afterwards that I looked like death. We’re lying in bed, me propped up with several pillows, in so much pain, and I very softly whisper, hon, I’m almost thinking…never mind. Sterling asks, no, what is it? I was just thinking maybe we should go to the emerg… I never even got to finish the thought, Sterling was out of bed, the light was on, and he was helping me into my clothes. That was all he'd been waiting for.
Tuesday, 28th June 2011. We arrive in the emergency room after midnight. At check-in I mention that I was there last Thursday night and saw Dr. Spooner, the nurse says on he’s on again tonight, and I instantly feel better. In spite of the hour we still have to wait a few hours before being seen. We got quite the show while waiting though. First an RCMP officer brings in a young kid, who keeps trying to run off. Then another guy comes in escorted by four RCMP officers. When we’re finally taking back and I’m put in a bed, we see Dr. Spooner again and I fill him in on everything. He tells me he’s going to keep me overnight, give me something for the pain, and I’ll see the surgeon first thing in the morning. Have I mentioned how much I love Dr. Spooner?! The nurse comes by, puts an IV in my right arm (difficult to do with my little veins that like to play hide-and-seek, but she manages on the first try) and through the IV they give me Gravol (which I had once before years before and it puts me out like a light) and something wonderful called Dilaudid. Shortly after they put this stuff in my IV, I’m holding Sterling’s hand looking at him grinning and saying “Wow. Oh, wow.” Over and over. It’s the first time in a month I’m not in pain.
Sterling wants to stay, but by now it’s 4AM and I tell him he’ll be better able to help me if he goes home and gets some sleep. Besides, I’m finally feeling no pain! Sterling reluctantly leaves and I manage to get several hours sleep.
The next morning I have to wait in the ER for quite a while. Sterling comes back, with his Timmy’s, to the envy of the staff. I can’t have anything to eat or drink at all, not even water, because they are going to get me into surgery as soon as possible. Two young interns come by who are going to be involved in the surgery and speak with me about it. Finally I meet the wonderful Dr. Wankling, my surgeon, and he explains that he is going to do a laparoscopic surgery to get the biopsies. Looking back on it now, I can't believe I wasn't more nervous about having surgery, but I was just so tired of the pain. Eventually I get wheeled upstairs for a short bit, where we wait for a bit. I say goodbye to Sterling as they wheeled me off to surgery, where I’m put under.
I wake in recovery, in so much pain. I later discover they have me back on morphine rather than the Dilaudid that actually worked the night before. Ice chips are heaven. Once I calm down a little, they wheel me upstairs, where I’m reunited with Sterling... and given a private room. Later, Sterling will tell me this is when he first figures it’s something serious, because most of the rooms in the post-surgery ward are doubles. I don’t think anything of it though, because I’m still in massive amounts of pain. They keep trying to control it with morphine, and it’s just not working. I end up rambling to Sterling, hon, I can’t do this, I can’t stand this, I can’t, I can’t, I can’t. I tell the nurses about how the morphine pills didn’t work and that the stuff they gave me in the ER did work (I couldn't remember the name Dilaudid). They switch me over to the Dilaudid, and the pain while not gone starts to become controlled. Now we’re just waiting for Dr. Wankling, who will come talk to us as soon as he gets a chance, he just had a lot of surgeries that day. So we wait. It’s getting close to 5PM so I call my work and let them know I won’t be in again tomorrow. (Sterling had called the previous night when he got home & left a message that I wouldn’t be in that day.) The CEO calls me back and tells me to call as soon as I get the results. We also call my mom & dad to update them on what’s happening, as the last they had heard I was going to have to wait at least a week before surgery. Since it’s Tuesday, Sterling’s work shift starts and he gets an in-town call-out. He puts it off as long as he can, but then has to leave. Of course, shortly after he’s gone is when the surgeon finally comes in.
Dr. Wankling fortunately has the best bedside manner. He doesn’t pull any punches though: they found cancer in my omentum. They took biopsies which are currently being analyzed, but he has seen one other virtually identical case years ago, and in that case it was stomach cancer that had spread to the omentum, and he suspects that’s what’s happened in my case too. He asks about calling Sterling, but I tell him Sterling will be back soon. He tells me to have the nurses page him to come talk to Sterling as soon as he gets back. He tells me he is going to call my parents, what’s their numbers? I hand him my little red book, point them out, and he leaves to make the calls.
I’m in shock, and for a good ten to fifteen minutes, absolutely terrified. Cancer! Oh god, I’m going to die. I don’t want to die! But soon a sense of absolute calm descends, and I just know: I’m not going to die. This is going to change everything, but I am going to survive, and thrive. This is going to suck, but it will be a massive learning & growth experience. I’m going to be OK.
I’m so glad this feeling arrived when it did, because it put me in the right place mentally to comfort Sterling & my family. As it turned out, after Dr. Wankling called my Dad, Dad immediately called Sterling, who was done his call and on his way back to the hospital. My Dad of course didn’t want to break the news to Sterling over the phone that way, but Sterling knew from the tone of my Dad’s voice that something was very wrong, and insisted. Of course, when Sterling had left they had been just starting to control my pain, and fresh in his mind is all my "I can’t live like this.: So of course he arrived in my hospital room very very upset, telling me that he needs me & I had to fight this, and I was able to reassure him and calm him down.
Then I started calling. I called my best friend Mandy, so she could let all our circle of friends know what was going on. Then I tried to call the CEO, and when she was out of cell phone range called her executive coordinator to make sure work knew. Then I started calling my family: my Mom, my Dad & Stepmom, my brother, and my sister. All so upset. I was able to reassure all of them a bit. Eventually, after all those phone calls, we were so lucky that my private room had a fold-down couch & Sterling was welcome to stay with me. We settled in for the night.
So there, that’s the story of how my life got turned upside down in one short month. I’ll continue on with the story of my hospital stay in my next post. This was a really tough post for me to write; not only is it long & I wanted to include all the details I could, but I haven’t been in the right head space to go back & relive this awful ordeal. But I wanted everyone to know where I’m coming from, and in order to do that you have to know what I went through to get here. Thank you for reading this whole ridiculously long thing - you really should get an endurance medal or something! ;)
23 July 2011
Hindsight
They say hindsight's 20/20. One of the most common questions I get asked after people learn of my cancer is if, looking back, there were signs I missed? Are there things that, in hindsight, should have tipped me off that something was wrong?
I finally figured out that what people are really asking is, Tell me why you got cancer, so I can compare your life to mine, and feel safe again.
I'm not saying people are self-centred & only concerned about themselves. Not at all! On the contrary, I think this is a perfectly natural coping method that we all engage in. I know I've done the same thing many times. We hear about some horrible natural disaster that killed hundreds of people, and we think, well, I don't live somewhere where tornadoes/floods/earthquakes/etc. happen semi-regularly, so that couldn't happen to me. We hear about a fatal car accident, and we think, well, I wouldn't have been driving that fast under those conditions, so that couldn't happen to me. We hear about someone being diagnosed with lung cancer, and we feel sorry for them, but deep down we're consoled by the fact that they've been a heavy smoker for fifty years. Couldn't happen to me.
It's all part of the very human need to feel in control of our lives. Our method of coping when we come face-to-face with circumstances beyond human control is to find an explanation, a reason, a way we're different, a way it couldn't happen to us, so we can feel safe again.
Which is why a lot of folks are really struggling to accept what's happening to me. They look at me and say, she's only 32. Reasonably healthy, never smoked, seldom drinks. No family history of stomach cancer. Lived her whole life in Canada, other than a few brief trips to nice touristy places. Always worked white-collar jobs in nice offices (no blue-collar exposures to toxins). There seams to be no reason for me to suddenly have stage IV cancer. But I do. And if it can happen to me, it could happen to anybody. Which scares the pants off people. We all want things to happen for a reason, because if there's a reason, a cause, we can avoid said cause & stay safe. We can protect ourselves & those we love.
So people want to hear about my earliest symptoms. How was my cancer found? My next post is another very long one I've been working on for quite a while, that will detail the journey from when I first started to experience abdominal pain to the final diagnosis of stage IV stomach cancer (about a month, all told). But here I'll go over the more "ancient" history.
Because I do have a history of stomach problems. For most of my adult life, I suffered from sudden bouts of diarrhea. I first remember noticing it in my early years of university, so in my late teens. At first it mostly occurred when my dad would take me out for a nice dinner... I joked that I was allergic to "real food", that my body had grown accustomed to living solely on junk.
And it *was* junk. I was never much of a cook, and more or less lived on the "5 Cs": Chips, Candy, Chocolate, & Coca-Cola. My stomach problems would wax & wane & wax again. The problem would be practically non-existent for months at a time. Sometimes it was only a minor inconvenience. And sometimes, it would get so bad I would have to plan my whole life around the ever-present possibility that I would suddenly, urgently need a washroom.
I did ask various doctors over the years if there was anything to be done. They would ask me a few questions, and then say it sounded like I had a "nervous stomach". Their advice was, if I noticed any particular foods that didn't agree with me, avoid them. No shit, Sherlock! None of the doctors ever seemed concerned, or suggested that my troubles could be a sign of something serious.
I did try various cures & treatments over the years. For a time it seemed like red meat (steak in particular) was causing my symptoms, so I stopped eating that for a few years, eventually adding it back but only in small portions. I also tried various bowel cleanses and digestive herbs. Most seemed to help a little, or for a little while, but nothing ever got rid of the problem completely.
Of course I googled & read books, about IBS (Irritable Bowel Syndrome) and similar conditions, but none of them seemed a really strong match to my own symptoms. I do remember one article that talked about "bathroom mapping", which hit home in a big way. Bathroom Mapping is a term for when the very first thing you notice about any new place you visit is where the washroom is. This was something that I'd done for so long it was second nature; until I saw it named, it never occurred to me that everyone doesn't do this. Every store I shop at, I can tell you where their washroom is, and how open they are to letting customers use it. I can still tell you the same about most of Ottawa, a city I haven't set foot in for seven years now. That's how deep the need & knowledge goes.
My symptoms got really, really bad last summer & fall (of 2010). Near-catastrophic incidents during trips to Calgary & Vancouver made it clear that something *had* to change, that I couldn't live like this anymore. The suddenness of the diarrhea was at this point so bad that I was basically a hostage: Sterling & I couldn't even go out for a simple dinner & a movie. The only method I had to cope with my symptoms was to just not eat for several hours before I had plans. I often wished that not eating for the rest of my life was a viable option.
Finally, desperate, I took the recommendation of several coworkers and went to see a naturopath. At the end of my very first appointment, he told me he could help me. I cried, I was so relieved & happy. He ordered an ALCAT blood test, which tests for food sensitivities (not allergies). When the report came back in mid-December, it showed that I was highly sensitive to two foods: cottonseed oil (used in lots of potato chips & fast food) and cane sugar. All that junk I'd been living on for all those years was what was making me sick. I was also moderately sensitive to an additional ten foods, ranging from gluten to carrots to strawberries to salmon.
The recommended treatment for food sensitivities was to cut out all highly & moderately sensitive foods for 3-6 months, and then gradually try and reintroduce them into your diet. I made this drastic diet change right before Christmas 2010... and by the time I came back to work after the Christmas/New Year break, a scant three weeks later, I'd lost 20 pounds. I continued to lose weight until my final weight loss currently sits around 40 pounds. As nice as the weight loss was, even more exciting was that it did clear up my digestive problems. No more embarrassing mad dashes to the bathroom! I felt like I'd gotten my life back.
Then, the pain started. And I was diagnosed with cancer.
After my cancer diagnosis, I explained this history of stomach problems to several of my doctors. I was so scared. Scared that a decade of stomach problems I'd mostly ignored had been signs of the cancer, and if only I'd taken them more seriously, my cancer would have been found before it spread. Or at the very least, I thought, maybe my sudden, drastic diet change had something to do with the cancer. Given the timing, it seemed unlikely to all be just a coincidence.
But the doctors all told me, that even with the benefit of hindsight, if they'd seen me with these original stomach symptoms, they would have also thought food sensitivities, or IBS, or a similar disorder, but not cancer. None of them seemed to think my old stomach problems were related to the cancer at all. And once the oncologist got involved, and said he estimated the cancer started about a year ago, I was able to think back a year and rack my brain trying to find something that changed around that time. I couldn't think of anything.
The only symptom the doctors agreed might have been an early warning sign was how quickly I lost weight last Christmas. But I couldn't even feel bad about missing that one, because if you had seen the amount of candy, deep-fried food, and pop I'd been consuming & suddenly cut out cold-turkey, the weight loss didn't seem that unreasonable. Also, everyone around me agreed that it seemed like a healthy weight loss. I didn't look sickly; on the contrary, I looked so good it inspired several people in my life to diet/exercise more.
No matter how I look at it, there just wasn't much for signs that cancer was growing inside me. I was mostly relieved to learn that I hadn't "caused" this, that I didn't have to add guilt to an already heaping emotional plate. But I was also a little disappointed. Part of me was, like everyone else, hoping for a reason and searching for an explanation. But there just doesn't seem to be an easy answer in this case. Life isn't fair, or logical. Sometimes good things happen to bad people, and bad things happen to good people. Some people win the lottery, and some get cancer for no apparent reason.
Hindsight can't give me a reason for why this is happening to me, but I still believe with all my heart that there *is* a reason. And since hindsight has failed, the key to finding that reason must be foresight. I haven't found my reason, my explanation yet, though I have caught a few glimpses of it, including this one in the form of a video posted on my FaceBook wall by m'colleague Brodie:
Gods & Goddesses, what a ridiculously long post this has become! And I still don't really know what I've been trying to say. I guess I'll end with an Irish Blessing:
"May you have the hindsight to know where you've been,
The foresight to know where you are going,
And the insight to know when you have gone too far."
I finally figured out that what people are really asking is, Tell me why you got cancer, so I can compare your life to mine, and feel safe again.
I'm not saying people are self-centred & only concerned about themselves. Not at all! On the contrary, I think this is a perfectly natural coping method that we all engage in. I know I've done the same thing many times. We hear about some horrible natural disaster that killed hundreds of people, and we think, well, I don't live somewhere where tornadoes/floods/earthquakes/etc. happen semi-regularly, so that couldn't happen to me. We hear about a fatal car accident, and we think, well, I wouldn't have been driving that fast under those conditions, so that couldn't happen to me. We hear about someone being diagnosed with lung cancer, and we feel sorry for them, but deep down we're consoled by the fact that they've been a heavy smoker for fifty years. Couldn't happen to me.
It's all part of the very human need to feel in control of our lives. Our method of coping when we come face-to-face with circumstances beyond human control is to find an explanation, a reason, a way we're different, a way it couldn't happen to us, so we can feel safe again.
Which is why a lot of folks are really struggling to accept what's happening to me. They look at me and say, she's only 32. Reasonably healthy, never smoked, seldom drinks. No family history of stomach cancer. Lived her whole life in Canada, other than a few brief trips to nice touristy places. Always worked white-collar jobs in nice offices (no blue-collar exposures to toxins). There seams to be no reason for me to suddenly have stage IV cancer. But I do. And if it can happen to me, it could happen to anybody. Which scares the pants off people. We all want things to happen for a reason, because if there's a reason, a cause, we can avoid said cause & stay safe. We can protect ourselves & those we love.
So people want to hear about my earliest symptoms. How was my cancer found? My next post is another very long one I've been working on for quite a while, that will detail the journey from when I first started to experience abdominal pain to the final diagnosis of stage IV stomach cancer (about a month, all told). But here I'll go over the more "ancient" history.
Because I do have a history of stomach problems. For most of my adult life, I suffered from sudden bouts of diarrhea. I first remember noticing it in my early years of university, so in my late teens. At first it mostly occurred when my dad would take me out for a nice dinner... I joked that I was allergic to "real food", that my body had grown accustomed to living solely on junk.
And it *was* junk. I was never much of a cook, and more or less lived on the "5 Cs": Chips, Candy, Chocolate, & Coca-Cola. My stomach problems would wax & wane & wax again. The problem would be practically non-existent for months at a time. Sometimes it was only a minor inconvenience. And sometimes, it would get so bad I would have to plan my whole life around the ever-present possibility that I would suddenly, urgently need a washroom.
I did ask various doctors over the years if there was anything to be done. They would ask me a few questions, and then say it sounded like I had a "nervous stomach". Their advice was, if I noticed any particular foods that didn't agree with me, avoid them. No shit, Sherlock! None of the doctors ever seemed concerned, or suggested that my troubles could be a sign of something serious.
I did try various cures & treatments over the years. For a time it seemed like red meat (steak in particular) was causing my symptoms, so I stopped eating that for a few years, eventually adding it back but only in small portions. I also tried various bowel cleanses and digestive herbs. Most seemed to help a little, or for a little while, but nothing ever got rid of the problem completely.
Of course I googled & read books, about IBS (Irritable Bowel Syndrome) and similar conditions, but none of them seemed a really strong match to my own symptoms. I do remember one article that talked about "bathroom mapping", which hit home in a big way. Bathroom Mapping is a term for when the very first thing you notice about any new place you visit is where the washroom is. This was something that I'd done for so long it was second nature; until I saw it named, it never occurred to me that everyone doesn't do this. Every store I shop at, I can tell you where their washroom is, and how open they are to letting customers use it. I can still tell you the same about most of Ottawa, a city I haven't set foot in for seven years now. That's how deep the need & knowledge goes.
My symptoms got really, really bad last summer & fall (of 2010). Near-catastrophic incidents during trips to Calgary & Vancouver made it clear that something *had* to change, that I couldn't live like this anymore. The suddenness of the diarrhea was at this point so bad that I was basically a hostage: Sterling & I couldn't even go out for a simple dinner & a movie. The only method I had to cope with my symptoms was to just not eat for several hours before I had plans. I often wished that not eating for the rest of my life was a viable option.
Finally, desperate, I took the recommendation of several coworkers and went to see a naturopath. At the end of my very first appointment, he told me he could help me. I cried, I was so relieved & happy. He ordered an ALCAT blood test, which tests for food sensitivities (not allergies). When the report came back in mid-December, it showed that I was highly sensitive to two foods: cottonseed oil (used in lots of potato chips & fast food) and cane sugar. All that junk I'd been living on for all those years was what was making me sick. I was also moderately sensitive to an additional ten foods, ranging from gluten to carrots to strawberries to salmon.
The recommended treatment for food sensitivities was to cut out all highly & moderately sensitive foods for 3-6 months, and then gradually try and reintroduce them into your diet. I made this drastic diet change right before Christmas 2010... and by the time I came back to work after the Christmas/New Year break, a scant three weeks later, I'd lost 20 pounds. I continued to lose weight until my final weight loss currently sits around 40 pounds. As nice as the weight loss was, even more exciting was that it did clear up my digestive problems. No more embarrassing mad dashes to the bathroom! I felt like I'd gotten my life back.
Then, the pain started. And I was diagnosed with cancer.
After my cancer diagnosis, I explained this history of stomach problems to several of my doctors. I was so scared. Scared that a decade of stomach problems I'd mostly ignored had been signs of the cancer, and if only I'd taken them more seriously, my cancer would have been found before it spread. Or at the very least, I thought, maybe my sudden, drastic diet change had something to do with the cancer. Given the timing, it seemed unlikely to all be just a coincidence.
But the doctors all told me, that even with the benefit of hindsight, if they'd seen me with these original stomach symptoms, they would have also thought food sensitivities, or IBS, or a similar disorder, but not cancer. None of them seemed to think my old stomach problems were related to the cancer at all. And once the oncologist got involved, and said he estimated the cancer started about a year ago, I was able to think back a year and rack my brain trying to find something that changed around that time. I couldn't think of anything.
The only symptom the doctors agreed might have been an early warning sign was how quickly I lost weight last Christmas. But I couldn't even feel bad about missing that one, because if you had seen the amount of candy, deep-fried food, and pop I'd been consuming & suddenly cut out cold-turkey, the weight loss didn't seem that unreasonable. Also, everyone around me agreed that it seemed like a healthy weight loss. I didn't look sickly; on the contrary, I looked so good it inspired several people in my life to diet/exercise more.
No matter how I look at it, there just wasn't much for signs that cancer was growing inside me. I was mostly relieved to learn that I hadn't "caused" this, that I didn't have to add guilt to an already heaping emotional plate. But I was also a little disappointed. Part of me was, like everyone else, hoping for a reason and searching for an explanation. But there just doesn't seem to be an easy answer in this case. Life isn't fair, or logical. Sometimes good things happen to bad people, and bad things happen to good people. Some people win the lottery, and some get cancer for no apparent reason.
Hindsight can't give me a reason for why this is happening to me, but I still believe with all my heart that there *is* a reason. And since hindsight has failed, the key to finding that reason must be foresight. I haven't found my reason, my explanation yet, though I have caught a few glimpses of it, including this one in the form of a video posted on my FaceBook wall by m'colleague Brodie:
Gods & Goddesses, what a ridiculously long post this has become! And I still don't really know what I've been trying to say. I guess I'll end with an Irish Blessing:
"May you have the hindsight to know where you've been,
The foresight to know where you are going,
And the insight to know when you have gone too far."
21 July 2011
Nana korobi, ya oki
My painting arrived today!
Shortly after I was hospitalized, my colleagues (with the boss's blessing) dropped off a laptop, on the strict condition that I use it to play on the internet and keep in touch with folks via FaceBook & email, and NOT to do any work.
Sterling & I were browsing about, and I was showing him an artist's website, which led to checking out her current eBay auctions. Soniei (@Soniei on Twitter, where I first "met" her) is both an amazing artist and a sweet, interesting person whose art I have long loved & wanted to buy... once we were out of debt, once I found the perfect piece that really spoke to me, once the moon & planets aligned, etc. etc. you get the idea.
While looking at Soniei's auction listings for her original paintings (she also sells prints through her own website), I quickly clicked on (and just as quickly clicked away from) this painting:
I like all of Soniei's work, but she paints in several different styles, and this was frankly not one of my favourites. But Sterling made the comment, it's rolling hills. And then I had to click back to see what he was talking about. And once he pointed it out, I could see it, the hills. But still... and then I saw the translation of the Japanese phrase painted on it:
Nana korobi, ya oki
(Fall down seven times, get up eight times)
All of Soniei's work incorporates Japanese characters, sometimes just a single word, and sometimes a saying/proverb, like this one.
This was only a couple days after my cancer diagnosis, and this saying really spoke to me, and to my determination to kick this cancer's ass, no matter the odds against me.
So I put in a bid. And won! My painting arrived today, and I have been admiring it. The style grows on me more & more the longer I look at it. And I'm very happy to have such a fabulous "encouragement to persevere" hanging on my wall, reminding me every day. Best $79 I ever spent.
If you would like a real treat, check out more of Soniei's work on her website: Soniei.com
Shortly after I was hospitalized, my colleagues (with the boss's blessing) dropped off a laptop, on the strict condition that I use it to play on the internet and keep in touch with folks via FaceBook & email, and NOT to do any work.
Sterling & I were browsing about, and I was showing him an artist's website, which led to checking out her current eBay auctions. Soniei (@Soniei on Twitter, where I first "met" her) is both an amazing artist and a sweet, interesting person whose art I have long loved & wanted to buy... once we were out of debt, once I found the perfect piece that really spoke to me, once the moon & planets aligned, etc. etc. you get the idea.
While looking at Soniei's auction listings for her original paintings (she also sells prints through her own website), I quickly clicked on (and just as quickly clicked away from) this painting:
I like all of Soniei's work, but she paints in several different styles, and this was frankly not one of my favourites. But Sterling made the comment, it's rolling hills. And then I had to click back to see what he was talking about. And once he pointed it out, I could see it, the hills. But still... and then I saw the translation of the Japanese phrase painted on it:
Nana korobi, ya oki
(Fall down seven times, get up eight times)
All of Soniei's work incorporates Japanese characters, sometimes just a single word, and sometimes a saying/proverb, like this one.
This was only a couple days after my cancer diagnosis, and this saying really spoke to me, and to my determination to kick this cancer's ass, no matter the odds against me.
So I put in a bid. And won! My painting arrived today, and I have been admiring it. The style grows on me more & more the longer I look at it. And I'm very happy to have such a fabulous "encouragement to persevere" hanging on my wall, reminding me every day. Best $79 I ever spent.
If you would like a real treat, check out more of Soniei's work on her website: Soniei.com
14 July 2011
Cataclysm
I've been working on several lengthy blog posts the last couple weeks, but can't seem to bring myself to push the "Publish Post" button on any of them.
My brain keeps giving me more rules and higher standards the posts have to meet before sharing them. I HAVE to tell my whole story in proper chronological order, I MUST include every last detail and be completely accurate, and as with all my writing, it goes without saying that everything about them must be ABSOLUTELY 110% COMPLETELY FUCKING PERFECT before I even THINK about letting anyone else read them. But I'm tired and it's way past time to get started with this already, so I've benched all those long posts to be completed "soon", and decided to start off a little simpler...
In the final days of May 2011, I started having abdominal pain. It was kinda weird, and after three nights of sleeping with my heating pad, I remember saying to myself, this is not normal. Something is Wrong.
Which cued a month of doctors and medical tests. I told myself that on the bright side, at least this was bringing me lots of new experiences, something I value. Within a month, I got to try for the first time: (non-dental) x-rays, an enema, a CT scan, ultrasounds, morphine, overnight hospitalization, Dilaudid, laparoscopic surgery, surgical staples, a catheter, a gastroscopy, a partial colonoscopy, and finally, chemotherapy.
In the first hours of Tuesday, 28th June 2011, my boyfriend took me to the emergency room where I was admitted, a normally healthy 32 year old woman who'd spent a month with excruciating abdominal pain, whose test results had all been normal, other than slight anemia and a few abnormalities on the CT scan, which could be anything.
Wednesday afternoon, 6th July 2011. Eight and a half days later, I was released from hospital with a diagnosis of Stage IV stomach cancer that had spread to my omentum, stomach lymph nodes, and possibly the outside of my intestines. It was already day 2 of cycle 1 of my chemotherapy.
Catacylsm: noun. "Any violent upheaval." Yup.
So that's what I've been trying to blog about. Hopefully now that I've started I'll be able to fill in the gaps. I have a lot to say about this, and I'm probably starting to bore my many visitors, so better to write it down and send it off into the blogosphere.
As things worked out, I was alone when the surgeon came in and told me he'd found cancer. He left to call my parents, and I had about 10-15 minutes of complete panic. No-no-no. Why me?! I'm going to die! That sort of thing. And then I became strangely calm. I was imagining driving down the freeway at 110, whizzing by an exit without even thinking about it, because it's so obviously not mine. I suddenly simply knew that even though this cancer thing was going to turn my life upside down and change everything in a million ways I couldn't even begin to anticipate, that I was going to come through it triumphant and much much stronger, a better person in every way. This does not mark the beginning of the end - only the end of the beginning.
Time to put on my big girl panties & deal with it.
My brain keeps giving me more rules and higher standards the posts have to meet before sharing them. I HAVE to tell my whole story in proper chronological order, I MUST include every last detail and be completely accurate, and as with all my writing, it goes without saying that everything about them must be ABSOLUTELY 110% COMPLETELY FUCKING PERFECT before I even THINK about letting anyone else read them. But I'm tired and it's way past time to get started with this already, so I've benched all those long posts to be completed "soon", and decided to start off a little simpler...
In the final days of May 2011, I started having abdominal pain. It was kinda weird, and after three nights of sleeping with my heating pad, I remember saying to myself, this is not normal. Something is Wrong.
Which cued a month of doctors and medical tests. I told myself that on the bright side, at least this was bringing me lots of new experiences, something I value. Within a month, I got to try for the first time: (non-dental) x-rays, an enema, a CT scan, ultrasounds, morphine, overnight hospitalization, Dilaudid, laparoscopic surgery, surgical staples, a catheter, a gastroscopy, a partial colonoscopy, and finally, chemotherapy.
In the first hours of Tuesday, 28th June 2011, my boyfriend took me to the emergency room where I was admitted, a normally healthy 32 year old woman who'd spent a month with excruciating abdominal pain, whose test results had all been normal, other than slight anemia and a few abnormalities on the CT scan, which could be anything.
Wednesday afternoon, 6th July 2011. Eight and a half days later, I was released from hospital with a diagnosis of Stage IV stomach cancer that had spread to my omentum, stomach lymph nodes, and possibly the outside of my intestines. It was already day 2 of cycle 1 of my chemotherapy.
Catacylsm: noun. "Any violent upheaval." Yup.
So that's what I've been trying to blog about. Hopefully now that I've started I'll be able to fill in the gaps. I have a lot to say about this, and I'm probably starting to bore my many visitors, so better to write it down and send it off into the blogosphere.
As things worked out, I was alone when the surgeon came in and told me he'd found cancer. He left to call my parents, and I had about 10-15 minutes of complete panic. No-no-no. Why me?! I'm going to die! That sort of thing. And then I became strangely calm. I was imagining driving down the freeway at 110, whizzing by an exit without even thinking about it, because it's so obviously not mine. I suddenly simply knew that even though this cancer thing was going to turn my life upside down and change everything in a million ways I couldn't even begin to anticipate, that I was going to come through it triumphant and much much stronger, a better person in every way. This does not mark the beginning of the end - only the end of the beginning.
Time to put on my big girl panties & deal with it.
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