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.