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!
31 December 2011
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.
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.
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.
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.
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