31 December 2011

Fare Thee Well, 2011!

It's the last day of 2011, a natural time to reflect back on the past year. To say that this past year has not exactly gone the way I planned is something of an understatement. Everyone keeps telling me, "I bet you're glad to see the end of this year!" and "2012 has to be better for you, right?!" Which leads nicely into my sole New Year's Resolution for 2012: to quote the Bee Gees, Stayin' Alive! I want to be around to ring in 2013.

The internets tell me that following a diagnosis of stage IV stomach cancer, on average a person lives 6 months without treatment & a year with. So my six months are up. If I'd lived a hundred years ago, I'd probably be dead or nearly so by now. So everything from here on out is a gift from modern medical science. And I am grateful. But also greedy. I want more, all the life I can get, damnit! But I've also more or less, most days, come to terms with the fact that the length of my life is pretty much out of my control. True, that's the way it is for most of us, but most people have the luxury of ignoring that fact at 33 - I don't.

Talking with my friends one night, I asked them, if you likely could only hope for a few more years, what would you do? We talked about it, and in the end decided, not much differently. Just keep living the life you're living. I think that's a sign you're doing what you should be - because if the prospect of dying soon would make you make drastic changes to how you're living your life, you should probably just make those changes anyways, 'cause you never know.

What this whole stupid fucking cancer experience has driven home to me, is that I love my life. I like vegging out, puttering around in a house I love. Cuddling with the most amazing man in the world on the couch, watching our stories. Harassing my cats. Curling with Team Awesome & hanging out with my friends. Going to work Monday through Friday with great people. Visiting my family. Traveling with my honey, whether it's somewhere exotic or just to the next town. This is what I want, for as long as I can have it.

It's funny, I always thought I had all this wasted potential, that someday if I just got my shit together I'd do something amazing. But maybe it's OK to just enjoy this quiet little life, and never set the world on fire. Maybe just enjoying each day is more than enough.

So goodbye 2011... you may have been the year I was diagnosed with cancer, but you were also the year when I met some amazing doctors & started treatment. When I realized how lucky I am, how many amazing people I have in my life. I'm looking forward to 2012 with quiet hopefulness... who knows, maybe it'll go down in history as the year they cure cancer! Happy New Year, everyone!

20 December 2011

Chemotherapy Rounds #5-8: September-December 2011

Chemotherapy Rounds #5-8
Round #5: Wednesday, 28th September 2011 - Tuesday, 25th October 2011
Round #6: Wednesday, 26th October 2011 - Tuesday, 15th November 2011
Round #7: Wednesday, 16th November 2011 - Tuesday, 8th December 2011
Round #8: Wednesday, 9th December 2011 - Tuesday, 28th December 2011

Chemotherapy becomes practically routine. That doesn't mean it sucked less, and each round would have it's own flavour - sometimes I would be expecting it to be really bad & I would feel better than expected, then I would go into the following round feeling more confident & it would wipe me out really bad again. There is also a cumulative fatigue that sets in... because you are allowed just barely enough time to recover from the last round before they hit you again, the fatigue gets slowly worse & worse. The positive news was that when I wasn't wiped out from treatment, I actually felt pretty normal - no more symptoms from the cancer itself, just from the treatment.

Round #5 was delayed a week due to my low neutrophil counts. Neutrophils are a type of white blood cell that fights infections. When you're on chemotherapy, there is a series of blood tests that are done the day before each round, to make sure your body has recovered sufficiently to handle the chemo. One of the tests done is counting your neutrophils. 1.5 and above are considered normal, 1 - 1.4 are considered mild neutropenia (you are mildly more vulnerable to infections), .5 - .9 is moderate, and below .5 & you are severely vulnerable to infections. My blood work on Wednesday, 28th September 2011 before my doctor's appointment was 1.4. The whole neutrophil thing over rounds #5 & #6 really showed how different doctors have different approaches. My pre-chemo doctor's appointment for round #5 was the first with a doctor other than Dr. Katakkar, because he was out of town. I saw the other full-time oncologist, Dr. Bishop, instead. His approach with the lowered neutrophils was to delay chemo until I was above 1.5. This was my first delay in treatment. The initial blood test was done on Wednesday, so Dr. Bishop scheduled me to come back the following Monday morning to be retested, and assuming my level was recovered to 1.5 or above, I would receive chemo right after. As it turned out, the blood test on Monday showed the level hadn't budged, so I was scheduled for the blood test again in 2 days, Wednesday. The third blood test on Wednesday, 5th October 2011, showed my neutrophils finally up to 2.0, so I had chemo #5 starting Thursday, 6th October, one week later than originally scheduled. I seemed to have a somewhat rougher time with chemo #5, I thought probably because the extra week off was an extra week to forget a little how crappy chemo makes me feel.

When I went in for the blood work for round #6 on Wednesday, 26th October, my neutrophil level was 1.3, but Dr. Katakkar was back, and I got to see a different approach. He decided to go ahead with chemo as scheduled, but also prescribed a week of Neupogea shots to boost my bone marrow's production of white blood cells. I had heard about these shots before, from nurses & other cancer patients. It's a very expensive drug ($1,318.38 for 7 little vials of the lowest dose). When we went in for chemo #6 on Thursday, 17th October, the nurse gave Sterling & I a little training session & all the paraphernalia we needed - syringes, disinfectant wipes, a sharps container, and a printout of detailed instructions. She recommended doing the shots right before bed, and taking a couple Tylenol a half-hour before doing the injection. The most common side effect is bone pain, which she described as being similar to growing pains in the bone when you're a teenager. Best to pop a couple Tylenol & then sleep through the worst of it. I was lucky in that I never really noticed any pain/side effects, other than dreading the shots themselves. Sterling gave them to me, starting the day after chemo (Friday) and the last one the following Thursday night. The shots need to go into fat, so we did them in my belly. Sterling was a little nervous, especially that first night, overcoming the natural instinct to not poke a sharp object into someone you love. But he did awesome, and I am so grateful because I don't know if I could have done it to myself. The only other thing of note for chemo #6 was that I got the baby bottle off on my 33rd birthday, 1st November. Happy Birthday to me! It's weird having your birthday after being diagnosed with cancer - you're just so grateful to still be alive, to have made it to see another birthday. And even though treatment has been going extremely well for me, I did think morbid thoughts, like will this be my last birthday? Since I was just finishing chemo on my birthday, I wasn't up for any celebrations on the actual day, but my work had a really nice birthday lunch for me on the following Friday. It was a sweet gesture.

I was glad when the bloodwork for chemo #7 came back & my neutrophils were much higher (2.1) thanks to the shots the previous round, so the shots weren't needed for this round. I had heard from other patients that once they started needing the shots they needed them every round, and I like to avoid as many pokes as possible! Round #7 wiped me out entirely, it was when I really felt the cumulative fatigue catch up with me. The day I got the bottle off (Tuesday, 22nd November) I got winded sitting at the table eating a bowl of soup! It was awful, literally just sitting up lifting a spoon to my mouth repeatedly almost took more than I had. I hadn't been too exhausted to eat since round #2, which was my eating-is-really-hard-no-appetite round. The fatigue did get better, of course, but I was just dreading more chemo. During most rounds, in the worst of it, there would be moments, hours, days when I would think, I can't go through this again. But that feeling was really strong in round #7. I was worried about the upcoming CT scans, that they would say I needed another 3 rounds.

I was scheduled for two CT scans, on Thursday, 1st December & Friday, 2nd December. This was what we had been waiting for since the last scans after round #4. Dr. Katakkar had pretty much refused to talk about a long-term treatment plan until after these scans. The first one was a bit of a gong show. It was the same scan I'd had twice before, of my abdomen. It involved drinking Telabrix contrast on a schedule over the two hours preceding the scan. Then they inject an IV contrast as well. Last time I'd had my port & gotten them to use that instead of putting an IV in my arm. They'd had to get a nurse to come in special to do that, as the CT technicians aren't allowed to use the port, but other than a bit of a wait for the nurse, it went off without a hitch. This time though, something went wrong. The nurse put the needle in my port, everything seemed fine, they got me in the machine & went to inject the contrast - and triggered a high-pressure alarm, shutting my port down. They got me out of the machine, the nurse fiddled, took the needle out, and put in a second one, but no luck. I was a little worried they'd broken my port, to be honest. Finally, they sent me down to the chemotherapy ward to let the more "expert" nurses there have a try. They were extremely busy in chemo that day, but one of the nurses took the time to stick me a third time & managed to get the thing working. We never did figure out what exactly went wrong. Anyways, needle inserted in my chest, we went back to CT to finally get the scan. Friday's scan (which was of my chest, just to be absolutely certain it was clear of cancer) went much smoother - no contrast, either to drink or to inject. Just show up & take another ride through the giant doughnut.

A week later, on Wednesday, 7th December, we had our bloodwork & doctor's appointment for round #8. The nurse had booked it, assuming at the very least whatever the results of the CT scans, I would be kept on Herceptin. It turned out my doctor's appointment was with one of the GPs who also work a few shifts in the Cancer Centre, rather than with Dr. Katakkar. I found out later this was because he was extremely busy with an epidemic of new patients, but at the time it hurt a bit, feeling like I'd been sluffed off. The doctor was very nice, she explained that the CT scans showed stable disease from 3 months ago, and so they were going to try me on just Herceptin (one of the 3 drugs I'd been receiving each round - the one that's targeted to the mutant gene my cancer has). This was very positive news in a lot of ways, but I cried & felt quite conflicted. It's the whole difference between trying for a cure, even if it's enough of a long shot to be considered a miracle, and accepting that I'm going to have live with cancer until treatment stops working & I die. Honestly, the Herceptin treatment was what I'd been expecting, but I just couldn't help hoping for the miracle. I had round #7 of Herceptin on Thursday, 10th December & it was SO much easier than full chemo. In, get one little bag of chemicals dripped into my port over the course of about an hour, leave. Pretty much no side effects, and no dreaded baby bottle. I was able to curl the next night!

For now, life is good. The Herceptin-only treatment is totally manageable to fit into a normal life - a couple hours at the hospital every 3 weeks, no sweat. I'm planning on going back to work in January, when the office reopens after the holiday break. Try to rebuild a life that's been on pause for six months. I'm having a hard time coping mentally with the fact that it's only been my life on pause, and that all around me, life has gone on without me. And with the idea of living with incurable cancer. I try to stay focused on how well everything has gone to this point, but it's hard not to worry about if/when the treatment stops working, the cancer becoming resistant & progresses. The whole "I'm-going-to-kick-cancer's-ass!" attitude that I had at the beginning has been whittled away by the realities of life with cancer. Sterling's approach to this (and life in general) has always been, hope for the best, prepare for the worst. That's what I'm trying to do these days.

06 December 2011

Chemotherapy Rounds #2-4: July-September 2011

Chemotherapy Rounds #2-4
Round #2: Wednesday, 27th July 2011 - Tuesday, 16th August 2011
Round #3: Wednesday, 17th August 2011 - Tuesday, 6th September 2011
Round #4: Wednesday, 7th September 2011 - Tuesday, 27th September 2011

Because of the great news that my cancer is HER2+ positive, I am switched to the UGIGAVCFT protocol. Only one of the drugs is the same as the first round, Cisplatin. Each round of chemo now starts with the cup full of anti-nausea meds, followed by a bag of saline, then the only drug that remains the same from last round, the Cisplatin. Next I get the Herceptin, which is the targeted drug for HER2+ cancer, which replaces the Epirubicin. Lastly I am hooked up to the baby bottle full of Fluorcil, which replaces the Capecitabine pills. Instead of 3 weeks worth of pills, I have an infusor (aka a plastic baby bottle of chemo) hooked up to my port for 5 days.

Chemo starts to become routine, my life running on a 3 week cycle. The first Wednesday, kinda day 0 as it's the day before the actual chemo is administered, I have to go to the hospital twice: once first thing in the morning to get my blood drawn, and later in the afternoon after the blood work results are back to see Dr. Katakkar for an exam. This is when he also verifies that my blood work numbers are good enough for chemo the next day (I'm not too immunocompromised or anything) and works out the dosages.

On day 1, Thursday, I go into the hospital for chemo usually first thing in the morning between 8AM-9AM and am usually done early afternoon (1:30PM or so). I leave Thursday with the infusor/baby bottle for 5 days. Usually I feel OK right after chemo, but lose strength & feel worse & worse until the bottle comes off.

The following Tuesday I go in to get the baby bottle removed. This is always a great relief, and usually my weakest point. Lots of times by the time I get home Tuesday I am exhausted by standing to take a shower. But that first shower after getting the baby bottle off is always wonderful even though it's exhausting - after five days not really able to do much other than a sponge bath because of the bottle.

Usually the rest of the week I feel pretty sick & crappy, it takes until the weekend to really start feeling like myself. The days between getting the bottle off and the weekend are usually the roughest mentally... the second round in particular, my mood was the darkest it has ever been. Even when I went through the depths of severe clinical depression, it was never as bad as that second week after round #2 of chemo. I finally understood how people can commit suicide... it was not just awful, but there was a certainty that nothing would ever change, that I would always feel that horrible, even though intellectually I knew that wasn't true, the feeling wasn't listening. Thankfully even though I usually have some dark days after each round of chemo, nothing has ever touched the awfulness after round #2. I think it was a combination of things, one of which was ultimately a highly positive sign: I was able after round #2 to go off the pain medication Dilaudid! Although I think withdrawal contributed to my drastic mood crash, the fact that the chemo had already worked enough to rid me of the terrible pain was a very positive sign. Led my oncologist to say treatment is "definitely working"

The last week/week-and-a-half of the cycle is my "good" week. I feel a little better day by day, and start to feel almost normal... just in time for the next round. This knocking-you-back-down-just-when-you're-feeling-better can become very demoralizing.

On Side Effects I puked once the second round of chemo, but after that we figure out how long to extend the anti-nausea meds. Knock wood, I haven't puked since round #2! This is great, I *hate* puking, and have never done much before in my life (could count the times I'd puked before chemo on my hands with fingers left over). To put it delicately, I've had a lot of digestive problems in my life, but always with the other end. After I went off the pain meds during round #2, the chemo caused diarrhea was no longer balanced by the narcotic caused constipation, and became more of a problem. Fortunately there is an Immodium protocol to follow as well.

I think it was round #3 or #4 where both Sterling & I seemed to have a minor gastrointestinal bug. This was very concerning because of all the "you're immunocompromised it you get an infection you could DIE" warnings. But I guess for a virus there's not much to be done/as concerned about, it's more bacterial infections that you urgently need antibiotics/medical care. We monitor my temperature pretty much daily, as a fever of 38 or over is the trigger to rush to the emergency room. Knock on wood, so far I haven't had that complication!

The side effects of chemo really vary, from person to person, but even from round to round. After round #2 I could barely eat - everything tasted disgusting. I hit my lowest weight ever in adulthood, and went & bought size 2 jeans that fit to prove it! We stocked up on Boost & Ensure & after a lifetime of being aware of a hundred little ways to cut calories, I found myself in the weird bizarro land of constantly trying to sneak extra calories in! Fortunately with subsequent rounds the taste changes haven't been so bad, my weight has stabalized around the normal level for my adulthood.

Another fun side effect of a couple of the anti-nausea meds is that they cause hiccups. I've been lucky that in my case it's been often enough to be annoying & amusing, but not truly disruptive to my life... one of the nurses told me some people have to switch drugs because they can't sleep for the hiccups.

I also get a few days where the bottoms of my feet are very painful. Even walking a short distance during this time is painful. Standing for any length of time is out of the question.

The worse side effect, and the most consistent & pervasive, is the fatigue. I tried to go for short walks around the block whenever I could, but some days it just wasn't possible. Of course, the less you do, the more your muscles waste away, and it's not like I was in peak physical condition before the cancer either. The physical fatigue is hard to live with, but for me the mental fatigue, or "chemo brain", is even worse. There are usually at least a few days each cycle when I can't even really watch TV, everything is beyond me, all I'm really fit to do is stare at the wall & breathe. It's sooo boring. I try to sleep as much as possible through that time, but even though I'm a champion sleeper & can sleep a lot, not even I can sleep all the time. Those days are the most frustrating.

On CAM (Complementary & Alternative Medicine) I went to see my naturopath during this time. I'm very skeptical of all the "miracle cancer cures" & unproven stuff, but my naturopath turned out to be a very reasonable person. He was very upfront that there's not really anything he can do to treat the cancer, that's the oncologist's job. What he could offer was a treatment plan to support my body & help manage some of the side effects of chemo. I had a couple high-dose vitamin C treatments, but have discontinued those as they are expensive & didn't seem to be doing a whole lot. I take the supplements he recommended irregularly, except for the high doses of melatonin he recommended at night - it seems to help me sleep.

On Mood/Attitude/Social Adjustment As I previously mentioned, after the horrible dark time I went through following round #2, I was dreading round #3 with a passion. My family started arranging to have someone visit during the worst part of each chemo round. While I appreciated the support, it was also a little frustrating that they were always here during my worst, I felt like not much of a hostess.

The thing that really affected my mood/attitude was reading & researching, both on the internet & books, reaching out to others with my sort of cancer, and basically discovering just how dire my prognosis really was. I discovered the prognosis was much worse than I was fooling myself into believing. While still on the hospital I had come across the statistic that only 4% of patients diagnosed with stage IV stomach cancer are still alive 5 years after diagnosis. I "met" other people with stage IV stomach cancer through the internet, all of whom had been told that their cancer was not curable, that they would be on chemo for the rest of their lives, until it stopped working & they died. Even though these other patients are doing reasonably well & still alive (they were all diagnosed months/years before me) was encouraging, the idea of having to live with cancer forever is a very different prospect from fighting it, beating it, and getting your life back.

I have always had issues with dying... it's a scary concept, the ultimate unknown. I've really had to face my mortality because of all this. I've broken down & freaked out, and I've had moments when I've been all zen & accepting, and everything in-between.

One thing that has been my saving grace throughout it all has been the amazing love & support I've received. Sterling, my significant other, has been nothing short of awesome, completely supportive. Not perfect, of course, we've had our misunderstandings & differences, but overall he's been a star. My immediate family have all been to visit again. A number of my extended family have taken this opportunity to reconnect & show support. And my friends & coworkers... they've been my lifeline to life outside cancer, making the trek out to visit me twice a week, to keep my spirits up & making me feel like I still have some connection to life. I will never be able to thank them enough.

On Results & Progress After round #4, I had a CT scan to check my progress. The results were very encouraging. The scan found no cancer in my liver, and the metastasis throughout my abdomen was much improved. There was no new ascites (fluid buildup in my abdomen), and even the primary cancer in my stomach looked improved. This was about as positive news as could be hoped for. Dr. Katakkar decided on another three rounds of this chemotherapy, followed by another CT scan, with future treatment to be decided based on the next CT scan.

04 December 2011

Chemotherapy Round #1: July 2011

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.

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!

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.

"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)

10 August 2011


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! ;)