So since getting the baby bottle infusor off last Sunday, I kept expecting to start feeling better. Instead the weakness seemed to carry on. Just walking a few steps left me panting. All I could do was lie in bed, not sleeping, I was all slept out, but unable to even lie on the couch & focus on TV. So frustrating!
Finally on Wednesday 15th February I had my first doctor's appointment with my new family doctor, the super-amazing-wonderful Dr. Kelly. He's amazing, so compassionate, a true old-fashioned family doctor, and I love him already. He told me to keep my spirits up, to keep fighting. Also said really nice things about my oncologist Dr. Katakkar. It's nice to have a new face on my health-care team.
I felt bad during the appointment because just sitting in a chair upright having a conversation was more than I could really handle. So after the appointment I asked Sterling to take me into the cancer centre. I could barely walk from from the parking lot in. One look at me & they had me in a bed, running blood tests & IV fluids. I apologized for bothering them, and they threatened to kick my ass. They said it's always the ones like me who don't want to be a bother who hold out longer then they should before breaking down & coming in. The initial theory because of how pale & weak I was was that I was severely anemic & needed a blood transfusion. So they did the bloodwork & ran IV fluids because in spite of my best efforts I was definitely dehydrated, causing my pulse to race in the 110-120 range. But the blood tests came back negative, that wasn't the problem. So then Dr. Fibich, saying "it's unlikely but I want to be thorough" sent me for a CT scan, where he found what he suspected: blood clots in my lungs. I guess this is very common in cancer patients, developing blood clots. That's why I was so short of breath all the time.
After the IV fluids and the CT scan discovery, they gave me an injection of warfarin (blood thinner) and scheduled an appointment the next day for Sterling & I to learn to give the subcutaneous injections ourselves (once a day, into my belly fat).
So that's what happened. Today Thursday 16th February we went into IV Therapy where they taught Sterling to do the injections, since I'm too chicken. It's pretty simple, especially since he as previously trained to give the neupogen shots I needed for a week that one round of chemo. After that it was back over to the cancer centre for more followup bloodwork & IV fluids; they sent me home around noon.
We stopped at London Drugs to pick up the first weeks worth of shots. Once again thank gods for my drug plan - the deductible for a month's supply was going to be $800+! Instead it's all covered.
I had a bit of a lie-down again once we got home tonight, but am starting to feel better. Hopefully this new treatment of shots will have me back on the mend. Thank you everyone as always for your warm thoughts & prayers, they keep me going when things are darkest.
16 February 2012
13 February 2012
Drained
So, it's past time to update on the outcome of my ascites. After a week-and-a-half of suffering with them, I had my regular pre-chemo doctor's appointment last Tuesday 7th February. After going in super-early for blood work, at the actual doctor's appointment Dr. Katakkar examined me and felt the ascites had consolidated into a big enough pocket that he could drain it. After a small needle to freeze an area upper-left of my belly button, he was able to easily draw off a small sample of the fluid. Then he hooked me up through a third needle to a hose into a 1 litre vacuum glass bottle. The ascites started zooming out into the jar. It was pretty fascinating to watch. This time the color was like apple juice/beer, complete with foamy head because of how fast it came out. We filled nearly three bottles, 2.42 litres in all. It was a great relief and since then I've been able to go off my pain meds and eat a little.
Chemotherapy #11 - Tuesday 7th February - Tuesday 21st February 2012
We also discussed the change in chemo. I came back Thursday 9th February for treatment and was turned away, as the protocol Dr. Katakkar wanted was rejected by the BC Cancer Agency board in Vancouver. After a day to straighten that out, they came up with a compromise chemo (GIGFOLFIRI) to give me Friday. It involved infusion with two new drugs, Irinotecan and folinic acid (leucovorin) followed by an infusion & 2 day baby bottle infusor of 5FU (fluorouracil) that I've had as a 5 day baby bottle before. There was a 1 in 10 chance I would have a specific allergic reaction to the irinotecan, which I did have, so I had to get a shot of atropine in my arm to combat that too. Other than that, everything went smoothly. I was feeling super rough by the time the baby bottle came off Sunday 12th February. The nurse Ava was sweet enough to come into the hospital on Sunday to unhook me & teach Sterling how so he can do it next time. Today I'm still feeling very rough but hopefully on the mend. Bad diarrhea from this one, so lots of immodium & trying to drink lots of fluids.
Chemotherapy #11 - Tuesday 7th February - Tuesday 21st February 2012
We also discussed the change in chemo. I came back Thursday 9th February for treatment and was turned away, as the protocol Dr. Katakkar wanted was rejected by the BC Cancer Agency board in Vancouver. After a day to straighten that out, they came up with a compromise chemo (GIGFOLFIRI) to give me Friday. It involved infusion with two new drugs, Irinotecan and folinic acid (leucovorin) followed by an infusion & 2 day baby bottle infusor of 5FU (fluorouracil) that I've had as a 5 day baby bottle before. There was a 1 in 10 chance I would have a specific allergic reaction to the irinotecan, which I did have, so I had to get a shot of atropine in my arm to combat that too. Other than that, everything went smoothly. I was feeling super rough by the time the baby bottle came off Sunday 12th February. The nurse Ava was sweet enough to come into the hospital on Sunday to unhook me & teach Sterling how so he can do it next time. Today I'm still feeling very rough but hopefully on the mend. Bad diarrhea from this one, so lots of immodium & trying to drink lots of fluids.
11 February 2012
Two Small Tributes to Two Big Men
In the last couple months, cancer has stolen two good men from my mother's life & by extension, from my life. I wanted to write a short tribute to them. Both were solid, salt-of-the-earth decent people who didn't deserve this horrible disease & who are greatly missed. RIP Larry. RIP Uncle Morris.
Obituary for Larry MacDonald
Larry Archie MacDonald
3rd October 1949 ~ 24th November 2011
It is with our deepest sympathy that we announce the passing of Larry Archie MacDonald, 62, on November 24, 2011 in Fort St. John, British Columbia.
Larry was born on October 3, 1949 in Lloydminster, Saskatchewan to parents Malcolm (Scotty) and Rosie MacDonald. As a teen Larry, attended Hillmond High School and later became a businessman with Federated Co-op for 15 years and Redwood Esso for 17. He was involved with the Fort St. John Flyers and a sponsor for many community activities.
Larry is predeceased by his father Malcom (Scotty) MacDonald, his mother Rosie MacDonald and his sisters Helen Charles and Sharon MacDonald.
Larry is survived by his daughters, Laurie and Aarin MacDonald, youngest son Scott MacDonald and grandchildren Tysen and Emily Peacock. He also leaves to mourn brothers, Ray, Graham and Murray MacDonald and his sisters Florence Brown, Catherine MacDonald, Doris Napper and Janet Grant.
Special thanks to Dr. Mark Thompson, Dr. Ilona Amstutz, Hamre’s Funeral Chapel, the nursing staff at the Fort St. John General Hospital and the staff at the Chemotherapy Clinic for their professionalism, care and understanding.
Expressions of sympathy may be made in memory of Larry to the Fort St. John Palliative Care Society 9812-108th Ave Fort St. John, BC V1J 2R3, The Salvation Army 10116-100th Ave Fort St. John, BC V1J 1Y6, or The Canadian Cancer Society #108-9325-100th St Fort St. John, BC V1J 4N4.
A memorial service was held on the 5th December 2011 at 2PM at Pomeroy Hotel 11308 Alaska Rd Fort St. John, BC, V1J 5T5.
Holly's Memories: Larry was the closest thing I've ever had to a stepdad.
I was already off at my second year university when my parents divorced & shortly thereafter Larry & my Mom starting dating & moved in together, so the relationship we had was always as adults rather then him doing any "raising" of me. Still, I like to think that at age 19 when he came into my life, I was still learning lots & that I learned a lot from Larry. I later worked for the better part of a year in his Redwood Esso convenience store & got to see that side of him too.
Larry loved to laugh & have a good time. When he was jolly he always made sure to take everyone around him along for the fun. He was extremely generous, with both his money & time. He was the type who fed a man who couldn't pay, because he could see the guy was hungry & needed a meal. "It sucks not having money," he always said, he had been completely broke himself & he tried to help people out whenever he could. After several years things didn't work out between him & my mom, but we both continued to care for him.
The last time I saw Larry was in September 2009 at Casey's Pub in Fort St. John. Larry had had his first run-in with cancer at that time, but still had the same cheerful attitude, same smile, same laugh. Gave me a hug. I'll always remember this warm, funny man and my heart goes out to my mother, his children, and all those who miss him every day. RIP Larry.
Obituary for Morris Phillips
Morris Howard Phillips
10th February 10 1943 ~ 31st January 2012
It is with our deepest sympathy that we announce the passing of Morris Phillips, 68, on January 31, 2012 in Fort St. John, British Columba.
Morris was born on February 10, 1943 in Edmonton, Alberta to parents Howard & Betty Phillips. As a teen Morris attended school in Calmar, Alberta. Through the years Morris worked hard to become a self employed contract operator for M&H Gas Well Servicing Ltd which he did proudly for the last 50 years. On May 7, 1964 Morris married his best friend Joann Elizabeth Robarts and would later become a father to three beautiful children. Morris was greatly involved at the Lake Point Golf & Country Club, one of his greatest accomplishment was when he shot a hole in one on Hole #5.
Morris is predeceased by his father Howard Phillips, his mother Elizabeth Phillips, and his brother Daniel (Danny) Phillips.
Morris is survived by his loving wife of 47 years JoAnn, his beloved children Shawn, Sherri and Dallise, and his cherished grandchildren Raschelle, Carter, Ryan, Tanniesha and Dayna.
Special thanks to the nurses at the Fort St. John Hospital for all their care and support they showed through this difficult time.
A memorial service was held Saturday, February 11, 2012 at 11:00am from the Royal Canadian Legion Hall. Morris will be laid to rest at the Woodlawn Cemetery at a later time. If so desired expressions of sympathy can be made in memory of Morris to the Fort St. John SPCA.
Holly's Memories: Morris was my mother's oldest brother & my oldest uncle.
I remember Morris from all the family events growing up. He was part of the tapestry of my young life, a large extended family that wrapped around me like a soft comforting blanket. Uncle Morris was a lot like my grandpa, his father: a gruff-on-the-outside man with a big heart just under a slightly crusty exterior. He was always there for my mom when she needed help or support, and I always loved & respected him for that.
In his last months Morris was in a great deal of pain, so although we're all sorry to see him go I am comforted by the idea that he has rejoined some of his favourite dogs & is walking the clouds with them now, in full health & strength and without any pain.
My heart goes out to my Auntie Jo, my cousins, and of course my mom who is having a horrible time dealing with his passing. RIP Uncle Morris.
Obituary for Larry MacDonaldLarry Archie MacDonald
3rd October 1949 ~ 24th November 2011
It is with our deepest sympathy that we announce the passing of Larry Archie MacDonald, 62, on November 24, 2011 in Fort St. John, British Columbia.
Larry was born on October 3, 1949 in Lloydminster, Saskatchewan to parents Malcolm (Scotty) and Rosie MacDonald. As a teen Larry, attended Hillmond High School and later became a businessman with Federated Co-op for 15 years and Redwood Esso for 17. He was involved with the Fort St. John Flyers and a sponsor for many community activities.
Larry is predeceased by his father Malcom (Scotty) MacDonald, his mother Rosie MacDonald and his sisters Helen Charles and Sharon MacDonald.
Larry is survived by his daughters, Laurie and Aarin MacDonald, youngest son Scott MacDonald and grandchildren Tysen and Emily Peacock. He also leaves to mourn brothers, Ray, Graham and Murray MacDonald and his sisters Florence Brown, Catherine MacDonald, Doris Napper and Janet Grant.
Special thanks to Dr. Mark Thompson, Dr. Ilona Amstutz, Hamre’s Funeral Chapel, the nursing staff at the Fort St. John General Hospital and the staff at the Chemotherapy Clinic for their professionalism, care and understanding.
Expressions of sympathy may be made in memory of Larry to the Fort St. John Palliative Care Society 9812-108th Ave Fort St. John, BC V1J 2R3, The Salvation Army 10116-100th Ave Fort St. John, BC V1J 1Y6, or The Canadian Cancer Society #108-9325-100th St Fort St. John, BC V1J 4N4.
A memorial service was held on the 5th December 2011 at 2PM at Pomeroy Hotel 11308 Alaska Rd Fort St. John, BC, V1J 5T5.
Holly's Memories: Larry was the closest thing I've ever had to a stepdad.
I was already off at my second year university when my parents divorced & shortly thereafter Larry & my Mom starting dating & moved in together, so the relationship we had was always as adults rather then him doing any "raising" of me. Still, I like to think that at age 19 when he came into my life, I was still learning lots & that I learned a lot from Larry. I later worked for the better part of a year in his Redwood Esso convenience store & got to see that side of him too.
Larry loved to laugh & have a good time. When he was jolly he always made sure to take everyone around him along for the fun. He was extremely generous, with both his money & time. He was the type who fed a man who couldn't pay, because he could see the guy was hungry & needed a meal. "It sucks not having money," he always said, he had been completely broke himself & he tried to help people out whenever he could. After several years things didn't work out between him & my mom, but we both continued to care for him.
The last time I saw Larry was in September 2009 at Casey's Pub in Fort St. John. Larry had had his first run-in with cancer at that time, but still had the same cheerful attitude, same smile, same laugh. Gave me a hug. I'll always remember this warm, funny man and my heart goes out to my mother, his children, and all those who miss him every day. RIP Larry.
Obituary for Morris PhillipsMorris Howard Phillips
10th February 10 1943 ~ 31st January 2012
It is with our deepest sympathy that we announce the passing of Morris Phillips, 68, on January 31, 2012 in Fort St. John, British Columba.
Morris was born on February 10, 1943 in Edmonton, Alberta to parents Howard & Betty Phillips. As a teen Morris attended school in Calmar, Alberta. Through the years Morris worked hard to become a self employed contract operator for M&H Gas Well Servicing Ltd which he did proudly for the last 50 years. On May 7, 1964 Morris married his best friend Joann Elizabeth Robarts and would later become a father to three beautiful children. Morris was greatly involved at the Lake Point Golf & Country Club, one of his greatest accomplishment was when he shot a hole in one on Hole #5.
Morris is predeceased by his father Howard Phillips, his mother Elizabeth Phillips, and his brother Daniel (Danny) Phillips.
Morris is survived by his loving wife of 47 years JoAnn, his beloved children Shawn, Sherri and Dallise, and his cherished grandchildren Raschelle, Carter, Ryan, Tanniesha and Dayna.
Special thanks to the nurses at the Fort St. John Hospital for all their care and support they showed through this difficult time.
A memorial service was held Saturday, February 11, 2012 at 11:00am from the Royal Canadian Legion Hall. Morris will be laid to rest at the Woodlawn Cemetery at a later time. If so desired expressions of sympathy can be made in memory of Morris to the Fort St. John SPCA.
Holly's Memories: Morris was my mother's oldest brother & my oldest uncle.
I remember Morris from all the family events growing up. He was part of the tapestry of my young life, a large extended family that wrapped around me like a soft comforting blanket. Uncle Morris was a lot like my grandpa, his father: a gruff-on-the-outside man with a big heart just under a slightly crusty exterior. He was always there for my mom when she needed help or support, and I always loved & respected him for that.
In his last months Morris was in a great deal of pain, so although we're all sorry to see him go I am comforted by the idea that he has rejoined some of his favourite dogs & is walking the clouds with them now, in full health & strength and without any pain.
My heart goes out to my Auntie Jo, my cousins, and of course my mom who is having a horrible time dealing with his passing. RIP Uncle Morris.
04 February 2012
Pain in the Ascites
Chemotherapy Round #10: Wednesday, 18th January - Tuesday, 7th February 2012
When updating people about my health, whether here or on FaceBook, I always strive for "honest-but-upbeat". I hate that cancer has made me a constant source of stress & anxiety for everyone who cares about me. I know worrying is the price for caring about someone, and that my loved ones pay it gladly, but still, it sucks. Stupid fucking cancer really, really sucks.
Which is why this update has been one of the hardest to share. It's been a very rough couple weeks.
When last I updated the blog, I'd had the PET scan showing that the cancer was still active rather than just scar tissue like the CAT scan suggested. This wasn't a huge surprise, because I'd been having more & more aches & pains, which although I diligently reported them to my doctors, I tried for the most part to write off as other things. I hoped that round #10 of chemo, full chemo, would knock the pain out again. That hasn't happened.
The chemo itself was one of the easiest rounds I've had - after 9 weeks since my last full chemo, my body had recovered more of my strength & energy than I thought. Just the pain was a problem, trying to find a new pain pill regimen that worked for me. At first I was hoping to manage with just over-the-counter stuff, like Tylenol, but that wasn't controlling it. So when we went in on Tuesday, 24th January to get the baby bottle off, we met with the pharmacist and she put me back on the Dilaudid.
We went home, expecting to be entering the recovery phase. Normally with chemo every day is a little better at this point. Instead, I struggled, and vomited a couple times, and by Thursday night in the wee hours I was tossing & turning, in pain, unable to get comfortable enough to sleep. I got up to go the bathroom and caught a glimpse of myself in the mirror, and was shocked by how distended my belly was, especially my upper abdomen. Starting right under my boobs I had a giant curve, like I was pregnant. I realized then that my ascites had gotten much worse and were what was causing a lot of my discomfort.
What are ascites? It's fluid in your abdomen. It's similar to a blister - your body tries to protect itself by building a layer of fluid over the injury. In this case, the growing cancer. I had ascites at the time of diagnosis; they were drained off during the exploratory surgery that found the cancer, and hadn't come back because chemo had worked so well. Dr. Katakkar had mentioned months & months ago that the fact that they hadn't come back was one of the surest signs that chemo was working. When I'd had my exam this round on the Wednesday right before chemo, he'd commented that there was a little fluid back, but nothing like this.
What did this mean? That the ascites had gotten so much worse, right after chemo? Ascites are a common complication from stomach cancer, and I had read online about a woman who had to have hers drained regularly. At this point, in the wee hours of Thursday night, having a giant needle stuck in my abdomen sounded like sweet relief. I decided to call the cancer clinic about this new complication first thing in the morning, and had a fitful sleep where I dreamed about jabbing myself in the belly with a giant bbq fork and draining the fluid off that way.
Friday morning I called the Cancer Centre & asked about the possibility of draining the ascites. Dr. Katakkar was out of town, but the new oncologist, Dr. Fibich was in, and agreed to get me an ultrasound & see me. So Sterling & I headed down to the hospital. We went to the Cancer Centre for some bloodwork, then upstairs for the ultrasound, where both the technician & doctor called it a "moderate" amount of ascites - I hope I never have "severe"! The problem was (is) that it's not one giant pocket; like my cancer, it's spread throughout my abdomen in isolated pockets. They can't drain either of the two really painful ones, in my upper abdomen, because of all the organs up there (stomach, liver, etc.). They end up marking an "X" in sharpie on my lower left, down above my hip, and "2.5 cm", which the technician explains is where the pocket starts; the needle has to go in at least that far, probably more like 3-3.5 cms. Gulp!
Back down to the Cancer Centre to see Dr. Fibich. He was very nice. He had read a lot of my file, we talked about my case for a bit, he showed me the ultrasound. Unfortunately, he wasn't very optimistic about what drainage would do for me, since they couldn't touch the pockets that were really bugging me, and just in general he said he's found it usually only gives minimal relief. But after studying the pocket they'd marked, he was willing to try. He froze the area, and tried twice - managed to get a small sample which he sent for tests. It looked like thin blood. After the second attempt he gave up, saying that the relief wasn't worth the discomfort the procedure was causing. He told me to take as much pain killer as needed, and to come back in, even over the weekend to the emergency room, if things got worse, or if the ascites started causing breathing problems. Dr. Katakkar would be back Monday & he would discuss with him.
Dr. Fibich confirmed the ascites were a bad sign. The most likely explanation is that the chemo regimen is no longer working. However, given the timing, it's also quite possible that this was just where the cancer was heading, and my switch back to full chemo was too little, too late to stop it from happening. In that case I will hopefully get better with the next round of chemo. There's also a tiny possibility that the chemo itself, killing the cancer, caused the flair-up in irritation & the ascites. It will be Dr. Katakkar's call whether to switch my chemo, or to try at least one more round with this protocol. But bottom line, there's little to nothing anyone can do until the next round of chemo. I called back Monday, and Dr. Katakkar concurred with all of this. Nothing to do but wait it out.
That weekend, 28-29th January, was awful. I was restless, squirmy, no position was comfortable for more than a few moments. The best that could be found was lying on my left side in bed in a semi-fetal position. I couldn't even lie comfortably on the couch. So it was pretty much a total bed rest weekend, so boring, so uncomfortable. The way I describe it is, that feeling of being completely bloated after you've eaten way, way too much at a holiday meal. But you're actually hungry, because you haven't been able to eat anything. And what little I eat, I can't seem to keep down. I've puked more in the last two weeks than in my entire 33 year life before that. There's just no room for food, and/or the fluid is pressing on my stomach, causing me to heave.
I did get some relief late Sunday night. In the wee hours, lying there, trying to get comfortable, it was like something suddenly shifted, and some of the pressure fell away, maybe 10-20%. It's not a lot, but it's something, and I've been grateful. It's meant that in the last week I've been able to sit or lie on the couch some & watch TV, more than I was able to do last weekend. I can also lie on my other side as well, giving me in general more options of "comfortable" positions. I've barely been on the computer though. I can't find a comfortable way to sit in my computer chair. Twice already, writing this blog post, the pain's gotten so bad I've had to go lay down in bed for 10-15 minutes to let it pass before another short session in the chair.
I managed to make 48 hours without puking. But that ended abruptly yesterday. Friday 3rd February I was awakened out of a dead sleep at 5AM to run to the bathroom & worship the porcelain god. There is something oddly sweet about both cats coming in the bathroom & hanging out with me while I retched. Either that or they wanted to see Mommy hacking up a hairball, or most likely wanted to be fed.
Sterling woke up around 6AM, after the first 2 rounds of puking but before the 3rd. He's so sweet, he brings me gingerale & rubs my back while I hurl. I'm sure if I had any hair he'd hold it back for me. I am so lucky to have him.
Yesterday (Friday) was the most puking day yet - in addition to the 3 times in the morning, I puked up my dinner (a few bites of taco) right before bed. Then I was up every half hour, 4-5 times last night, pooping water as well. (I've also been struggling with constipation even before this, so have to try to get some laxative in between all the other meds as well). And then this morning, I took my morning meds, and immediately puked them up as well, in spite of there being absolutely nothing in my system at all. I was crying this morning, clutching the toilet, Sterling rubbing my back, and I just kept saying, "I'm so scared." I've been really lucky with my quality-of-life so far, but this... this is just not good.
I'm OK, really. I will get through this. This morning I decided to stop trying to be a hero & just take more meds already: more breakthrough pain medication when I need it, and the anti-nausea pills on a regular basis, since I'll be fine fine fine & then suddenly horribly nauseous & puking. Hopefully these measures will help.
Everyone I've told "offline" has been so sweet, and expressed such feelings of helpless. "If there's anything I can, just let me know." I wish there was, but at this point there's just nothing anyone can do. Just knowing I have all your good thoughts/vibes/prayers is a great comfort. Thank you. And I hope for better news to share with all of you after chemo next Thursday, like the ascites going down.
When updating people about my health, whether here or on FaceBook, I always strive for "honest-but-upbeat". I hate that cancer has made me a constant source of stress & anxiety for everyone who cares about me. I know worrying is the price for caring about someone, and that my loved ones pay it gladly, but still, it sucks. Stupid fucking cancer really, really sucks.
Which is why this update has been one of the hardest to share. It's been a very rough couple weeks.
When last I updated the blog, I'd had the PET scan showing that the cancer was still active rather than just scar tissue like the CAT scan suggested. This wasn't a huge surprise, because I'd been having more & more aches & pains, which although I diligently reported them to my doctors, I tried for the most part to write off as other things. I hoped that round #10 of chemo, full chemo, would knock the pain out again. That hasn't happened.
The chemo itself was one of the easiest rounds I've had - after 9 weeks since my last full chemo, my body had recovered more of my strength & energy than I thought. Just the pain was a problem, trying to find a new pain pill regimen that worked for me. At first I was hoping to manage with just over-the-counter stuff, like Tylenol, but that wasn't controlling it. So when we went in on Tuesday, 24th January to get the baby bottle off, we met with the pharmacist and she put me back on the Dilaudid.
We went home, expecting to be entering the recovery phase. Normally with chemo every day is a little better at this point. Instead, I struggled, and vomited a couple times, and by Thursday night in the wee hours I was tossing & turning, in pain, unable to get comfortable enough to sleep. I got up to go the bathroom and caught a glimpse of myself in the mirror, and was shocked by how distended my belly was, especially my upper abdomen. Starting right under my boobs I had a giant curve, like I was pregnant. I realized then that my ascites had gotten much worse and were what was causing a lot of my discomfort.
What are ascites? It's fluid in your abdomen. It's similar to a blister - your body tries to protect itself by building a layer of fluid over the injury. In this case, the growing cancer. I had ascites at the time of diagnosis; they were drained off during the exploratory surgery that found the cancer, and hadn't come back because chemo had worked so well. Dr. Katakkar had mentioned months & months ago that the fact that they hadn't come back was one of the surest signs that chemo was working. When I'd had my exam this round on the Wednesday right before chemo, he'd commented that there was a little fluid back, but nothing like this.
What did this mean? That the ascites had gotten so much worse, right after chemo? Ascites are a common complication from stomach cancer, and I had read online about a woman who had to have hers drained regularly. At this point, in the wee hours of Thursday night, having a giant needle stuck in my abdomen sounded like sweet relief. I decided to call the cancer clinic about this new complication first thing in the morning, and had a fitful sleep where I dreamed about jabbing myself in the belly with a giant bbq fork and draining the fluid off that way.
Friday morning I called the Cancer Centre & asked about the possibility of draining the ascites. Dr. Katakkar was out of town, but the new oncologist, Dr. Fibich was in, and agreed to get me an ultrasound & see me. So Sterling & I headed down to the hospital. We went to the Cancer Centre for some bloodwork, then upstairs for the ultrasound, where both the technician & doctor called it a "moderate" amount of ascites - I hope I never have "severe"! The problem was (is) that it's not one giant pocket; like my cancer, it's spread throughout my abdomen in isolated pockets. They can't drain either of the two really painful ones, in my upper abdomen, because of all the organs up there (stomach, liver, etc.). They end up marking an "X" in sharpie on my lower left, down above my hip, and "2.5 cm", which the technician explains is where the pocket starts; the needle has to go in at least that far, probably more like 3-3.5 cms. Gulp!
Back down to the Cancer Centre to see Dr. Fibich. He was very nice. He had read a lot of my file, we talked about my case for a bit, he showed me the ultrasound. Unfortunately, he wasn't very optimistic about what drainage would do for me, since they couldn't touch the pockets that were really bugging me, and just in general he said he's found it usually only gives minimal relief. But after studying the pocket they'd marked, he was willing to try. He froze the area, and tried twice - managed to get a small sample which he sent for tests. It looked like thin blood. After the second attempt he gave up, saying that the relief wasn't worth the discomfort the procedure was causing. He told me to take as much pain killer as needed, and to come back in, even over the weekend to the emergency room, if things got worse, or if the ascites started causing breathing problems. Dr. Katakkar would be back Monday & he would discuss with him.
Dr. Fibich confirmed the ascites were a bad sign. The most likely explanation is that the chemo regimen is no longer working. However, given the timing, it's also quite possible that this was just where the cancer was heading, and my switch back to full chemo was too little, too late to stop it from happening. In that case I will hopefully get better with the next round of chemo. There's also a tiny possibility that the chemo itself, killing the cancer, caused the flair-up in irritation & the ascites. It will be Dr. Katakkar's call whether to switch my chemo, or to try at least one more round with this protocol. But bottom line, there's little to nothing anyone can do until the next round of chemo. I called back Monday, and Dr. Katakkar concurred with all of this. Nothing to do but wait it out.
That weekend, 28-29th January, was awful. I was restless, squirmy, no position was comfortable for more than a few moments. The best that could be found was lying on my left side in bed in a semi-fetal position. I couldn't even lie comfortably on the couch. So it was pretty much a total bed rest weekend, so boring, so uncomfortable. The way I describe it is, that feeling of being completely bloated after you've eaten way, way too much at a holiday meal. But you're actually hungry, because you haven't been able to eat anything. And what little I eat, I can't seem to keep down. I've puked more in the last two weeks than in my entire 33 year life before that. There's just no room for food, and/or the fluid is pressing on my stomach, causing me to heave.
I did get some relief late Sunday night. In the wee hours, lying there, trying to get comfortable, it was like something suddenly shifted, and some of the pressure fell away, maybe 10-20%. It's not a lot, but it's something, and I've been grateful. It's meant that in the last week I've been able to sit or lie on the couch some & watch TV, more than I was able to do last weekend. I can also lie on my other side as well, giving me in general more options of "comfortable" positions. I've barely been on the computer though. I can't find a comfortable way to sit in my computer chair. Twice already, writing this blog post, the pain's gotten so bad I've had to go lay down in bed for 10-15 minutes to let it pass before another short session in the chair.
I managed to make 48 hours without puking. But that ended abruptly yesterday. Friday 3rd February I was awakened out of a dead sleep at 5AM to run to the bathroom & worship the porcelain god. There is something oddly sweet about both cats coming in the bathroom & hanging out with me while I retched. Either that or they wanted to see Mommy hacking up a hairball, or most likely wanted to be fed.
Sterling woke up around 6AM, after the first 2 rounds of puking but before the 3rd. He's so sweet, he brings me gingerale & rubs my back while I hurl. I'm sure if I had any hair he'd hold it back for me. I am so lucky to have him.
Yesterday (Friday) was the most puking day yet - in addition to the 3 times in the morning, I puked up my dinner (a few bites of taco) right before bed. Then I was up every half hour, 4-5 times last night, pooping water as well. (I've also been struggling with constipation even before this, so have to try to get some laxative in between all the other meds as well). And then this morning, I took my morning meds, and immediately puked them up as well, in spite of there being absolutely nothing in my system at all. I was crying this morning, clutching the toilet, Sterling rubbing my back, and I just kept saying, "I'm so scared." I've been really lucky with my quality-of-life so far, but this... this is just not good.
I'm OK, really. I will get through this. This morning I decided to stop trying to be a hero & just take more meds already: more breakthrough pain medication when I need it, and the anti-nausea pills on a regular basis, since I'll be fine fine fine & then suddenly horribly nauseous & puking. Hopefully these measures will help.
Everyone I've told "offline" has been so sweet, and expressed such feelings of helpless. "If there's anything I can, just let me know." I wish there was, but at this point there's just nothing anyone can do. Just knowing I have all your good thoughts/vibes/prayers is a great comfort. Thank you. And I hope for better news to share with all of you after chemo next Thursday, like the ascites going down.
18 January 2012
PET Scan
Chemotherapy Round #9: Wednesday, 28th December 2011 - Tuesday, 17th January 2012
Everything can change in an instant.
Well, not really, it just feels that way. Like when I was diagnosed back in June... the doc's best guess was that the cancer had started a year earlier, so it wasn't actually overnight... it just felt like it.
After my CT Scan in early December, when it was thought that my cancer was stable & Herceptin would hold it that way, my life started to slowly change. I started to get my strength back without the chemo knocking me down every three weeks, I planned to go back to work when my office reopened January 3rd, and I spent a lovely Christmas with my siblings. Then in January, actually going back to work was a bigger change, but one I was coping with. And then I finally got the PET scan that Dr. Katakkar had referred me for booked, for Monday 16th January.
Then, the Thursday afternoon 12th January, there was a message on the machine: they were cancelling the PET scan. Had to rebook for the next day, Tuesday 17th January. It cost nearly as much as the original airline ticket to reschedule, but I managed. Then Tuesday morning, after dropping me off at the airport, Sterling came home to another message: they wanted to cancel that day's appointment! Fortunately when they couldn't get a hold of anyone at my house, they called the local cancer agency, who read them the riot act & told them I was already on my way, and they'd better find a way to keep my appointment.
I got to Vancouver fine. My Dad flew in from Calgary to come with me to the appointment. We met up in the airport, took a stretch limo downtown (Dad was spoiling me) to get Dad checked in to his hotel (he stayed over to take a number of business meetings the next day, while I was flying home that evening). From there we took a cab to the BC Cancer Agency in Vancouver. I filled out the prescan questionnaire & signed the six page consent form for the contrast injection. My appointment was at 1:15PM and about that time they called me to come back - Dad wasn't allowed to come with me, so we said goodbye in the waiting room & he said he'd be back in 2 hours or so, when the scan was supposed to be over.
Unfortunately, the technician & I hit a small snag. While going over my forms, we had a discussion about the "Are you menopausal?" question. At 33 that should be a firm no, but one of the less-publicized side effects of chemo is that it puts you into menopause - I've had one single surprise-period in the last six months. However, given that one period, there was a teensy-tiny-highly-unlikely possibility that I could be pregnant (instead of menopausal). So the technician went to discuss with the doctor, and came back to tell me they had decided I had to have a pregnancy test to rule out that tiny possibility before they could inject me with the contrast. Up to the 3rd floor we went, where I was introduced to a student-mind-if-I-try-to-draw-your-blood? Being the nice little guinea pig I am, I consented. She managed to get the blood out of my left arm, but I have a serious bruise there - her technique still needs a little work.
Once my blood was drawn, I went back downstairs to wait for the results (not available until 2:30PM). Glad I left oodles of time when booking my flight! Around 2:30PM I noticed a bit of commotion, and lots of whispering. Eventually the doctor came in to explain. The pregnancy test came back slightly elevated, causing the stir. The doctor explained that because of the type of cancer I have, and the fact that the test was only slightly elevated/borderline, he was pretty sure that it was the cancer causing a false positive, and so he was comfortable going ahead with the scan. Thank goodness - if he'd told me I'd come all that way for nothing, I would have been pissed! To his credit, he did apologize for the delay & for making me take a test that turned out to not really give them any useful information.
At this point they let Dad (& his friend Jane who'd come to meet me) come back to keep me company for the ten minutes or so before they could inject the contrast. It was good to be able to update Dad on what was going on - the technician said he'd been pacing back & forth wearing out the floor in the waiting room. We had a nice little chat, before they had to leave, before the radioactive contrast was brought in. OMG it looked like a doomsday device! A giant lead contraption enclosing a little vial. The injection went quickly, then I had to lay quietly for an hour while it circulated throughout my body. Once that was done I changed into a hospital gown & was taken for the actual PET scan. It takes about 18 minutes to be run through the machine, scanned from mid thigh to neck, and you have to lay perfectly still with your arms over your head. It's amazing how twitchy you feel as soon as you're told you mustn't move. I was also a little claustrophobic - like a CT, the machine is a giant doughnut, but a much thicker one, I felt much more encased than with the CT.
Once the scan was over, I was given a letter for the airport, because I was still radioactive & might set off their scanners (as it turns out, I didn't, which doesn't fill me with confidence in the screening procedures). I changed and Dad I took a cab to the airport. We had dinner in the White Spot there (I wasn't allowed to eat all day before the scan, so was pretty hungry, it was 5:30PM - although Dad was thoughtful enough to pick me up a rice krispie square for right after the scan, which I'd devoured at first opportunity - it really hit the spot). Then it was hugs goodbye, I cleared security (without setting off the alarms) and went to catch my flight... which ended up being delayed 2 hours. Grrr! Didn't get home till 10:30PM.
Today (Wednesday) I was scheduled for bloodwork at 8AM because I was scheduled for my third Herceptin-only treatment tomorrow. The nurses managed to reschedule my 10:15 doc appointment to be in the afternoon when the PET scan report would be ready. I went to work for the morning, and tried to distract myself. Sterling came to pick me up for lunch, after which we went for my doc appointment. Waiting in that little room, we were very anxious. When you've waited weeks already, why do the last few minutes feel so long?
Finally Dr. Katakkar came in. You know it's not good news when your oncologist sits down on the bed next to you and puts his arm around you. He'd been hoping that the scan would show that my cancer was now operable, but it's not. In order to be operable, active cancer has to be restricted to just the omentum and the stomach itself, both of which they can remove. Instead, the PET scan showed I still have active cancer at multiple other sites throughout my abdomen: on the outside of my bowels, and on a ligament that runs between the stomach and the liver, for example. This is very disappointing for everyone. I have to go back on full chemo. Another three rounds, we'll do another PET scan, which will hopefully show improvement over this one. We're not going to bother doing the CT scans anymore, because they obviously don't show enough detail. Dr. Katakkar is very sweet, tells me to keep my spirits up: it is still his goal to get me into remission.
Driving home, Sterling & I talk. We are both more OK with this news then we would have expected. The truth is, I've had pains in my abdomen for about a month now. I did report them to the other doctor, at my last appointment, but at the time she thought it was highly unlikely they were cancer related. So many things can cause gut pain, and I'd just had a stable CT scan less than a month earlier. I tried to talk myself out of the pain, tell myself I was being a hypochondriac. But the pain has gotten worse in the three weeks since that doctor's appointment - it hasn't reached anywhere near what I was having when I was diagnosed, this can still be handled by a couple Tylenol or Advil. I think part of why I'm not more upset about this news today is that part of me is glad to know it wasn't just paranoia. Turns out I know my own body a little better than I thought. Some part of me knew something was wrong, that the Herceptin alone wasn't getting the job done. So Sterling & I were both bracing ourselves for even worse news today: that the cancer had spread to my bones, or somewhere else that would equal "no hope". Hope, even a small one, is important, and we still have it.
After dropping Sterling off at home, I had to start sharing the news. I went back to work to tell them & try to tie things up as best I could. I felt so bad - barely back two weeks & now I have to leave again! I was just starting to find my stride again. Sigh. But they were all wonderfully supportive, as they have been throughout this whole ordeal. Tonight I spent on the phone, calling family & friends. Again, I am overwhelmed by everyone's love & support. I am so blessed that way. I tells ya, if love could cure cancer, I would be cured a hundred times over by now. Thank you all.
Chemo Round #10 starts tomorrow. Tomorrow night at this time I will once again have a baby bottle full of poison dangling around my neck. It's discouraging, but what can you do? Soldier on. And hope. Always hope.
Everything can change in an instant.
Well, not really, it just feels that way. Like when I was diagnosed back in June... the doc's best guess was that the cancer had started a year earlier, so it wasn't actually overnight... it just felt like it.
After my CT Scan in early December, when it was thought that my cancer was stable & Herceptin would hold it that way, my life started to slowly change. I started to get my strength back without the chemo knocking me down every three weeks, I planned to go back to work when my office reopened January 3rd, and I spent a lovely Christmas with my siblings. Then in January, actually going back to work was a bigger change, but one I was coping with. And then I finally got the PET scan that Dr. Katakkar had referred me for booked, for Monday 16th January.
Then, the Thursday afternoon 12th January, there was a message on the machine: they were cancelling the PET scan. Had to rebook for the next day, Tuesday 17th January. It cost nearly as much as the original airline ticket to reschedule, but I managed. Then Tuesday morning, after dropping me off at the airport, Sterling came home to another message: they wanted to cancel that day's appointment! Fortunately when they couldn't get a hold of anyone at my house, they called the local cancer agency, who read them the riot act & told them I was already on my way, and they'd better find a way to keep my appointment.
I got to Vancouver fine. My Dad flew in from Calgary to come with me to the appointment. We met up in the airport, took a stretch limo downtown (Dad was spoiling me) to get Dad checked in to his hotel (he stayed over to take a number of business meetings the next day, while I was flying home that evening). From there we took a cab to the BC Cancer Agency in Vancouver. I filled out the prescan questionnaire & signed the six page consent form for the contrast injection. My appointment was at 1:15PM and about that time they called me to come back - Dad wasn't allowed to come with me, so we said goodbye in the waiting room & he said he'd be back in 2 hours or so, when the scan was supposed to be over.
Unfortunately, the technician & I hit a small snag. While going over my forms, we had a discussion about the "Are you menopausal?" question. At 33 that should be a firm no, but one of the less-publicized side effects of chemo is that it puts you into menopause - I've had one single surprise-period in the last six months. However, given that one period, there was a teensy-tiny-highly-unlikely possibility that I could be pregnant (instead of menopausal). So the technician went to discuss with the doctor, and came back to tell me they had decided I had to have a pregnancy test to rule out that tiny possibility before they could inject me with the contrast. Up to the 3rd floor we went, where I was introduced to a student-mind-if-I-try-to-draw-your-blood? Being the nice little guinea pig I am, I consented. She managed to get the blood out of my left arm, but I have a serious bruise there - her technique still needs a little work.
Once my blood was drawn, I went back downstairs to wait for the results (not available until 2:30PM). Glad I left oodles of time when booking my flight! Around 2:30PM I noticed a bit of commotion, and lots of whispering. Eventually the doctor came in to explain. The pregnancy test came back slightly elevated, causing the stir. The doctor explained that because of the type of cancer I have, and the fact that the test was only slightly elevated/borderline, he was pretty sure that it was the cancer causing a false positive, and so he was comfortable going ahead with the scan. Thank goodness - if he'd told me I'd come all that way for nothing, I would have been pissed! To his credit, he did apologize for the delay & for making me take a test that turned out to not really give them any useful information.
At this point they let Dad (& his friend Jane who'd come to meet me) come back to keep me company for the ten minutes or so before they could inject the contrast. It was good to be able to update Dad on what was going on - the technician said he'd been pacing back & forth wearing out the floor in the waiting room. We had a nice little chat, before they had to leave, before the radioactive contrast was brought in. OMG it looked like a doomsday device! A giant lead contraption enclosing a little vial. The injection went quickly, then I had to lay quietly for an hour while it circulated throughout my body. Once that was done I changed into a hospital gown & was taken for the actual PET scan. It takes about 18 minutes to be run through the machine, scanned from mid thigh to neck, and you have to lay perfectly still with your arms over your head. It's amazing how twitchy you feel as soon as you're told you mustn't move. I was also a little claustrophobic - like a CT, the machine is a giant doughnut, but a much thicker one, I felt much more encased than with the CT.
Once the scan was over, I was given a letter for the airport, because I was still radioactive & might set off their scanners (as it turns out, I didn't, which doesn't fill me with confidence in the screening procedures). I changed and Dad I took a cab to the airport. We had dinner in the White Spot there (I wasn't allowed to eat all day before the scan, so was pretty hungry, it was 5:30PM - although Dad was thoughtful enough to pick me up a rice krispie square for right after the scan, which I'd devoured at first opportunity - it really hit the spot). Then it was hugs goodbye, I cleared security (without setting off the alarms) and went to catch my flight... which ended up being delayed 2 hours. Grrr! Didn't get home till 10:30PM.
Today (Wednesday) I was scheduled for bloodwork at 8AM because I was scheduled for my third Herceptin-only treatment tomorrow. The nurses managed to reschedule my 10:15 doc appointment to be in the afternoon when the PET scan report would be ready. I went to work for the morning, and tried to distract myself. Sterling came to pick me up for lunch, after which we went for my doc appointment. Waiting in that little room, we were very anxious. When you've waited weeks already, why do the last few minutes feel so long?
Finally Dr. Katakkar came in. You know it's not good news when your oncologist sits down on the bed next to you and puts his arm around you. He'd been hoping that the scan would show that my cancer was now operable, but it's not. In order to be operable, active cancer has to be restricted to just the omentum and the stomach itself, both of which they can remove. Instead, the PET scan showed I still have active cancer at multiple other sites throughout my abdomen: on the outside of my bowels, and on a ligament that runs between the stomach and the liver, for example. This is very disappointing for everyone. I have to go back on full chemo. Another three rounds, we'll do another PET scan, which will hopefully show improvement over this one. We're not going to bother doing the CT scans anymore, because they obviously don't show enough detail. Dr. Katakkar is very sweet, tells me to keep my spirits up: it is still his goal to get me into remission.
Driving home, Sterling & I talk. We are both more OK with this news then we would have expected. The truth is, I've had pains in my abdomen for about a month now. I did report them to the other doctor, at my last appointment, but at the time she thought it was highly unlikely they were cancer related. So many things can cause gut pain, and I'd just had a stable CT scan less than a month earlier. I tried to talk myself out of the pain, tell myself I was being a hypochondriac. But the pain has gotten worse in the three weeks since that doctor's appointment - it hasn't reached anywhere near what I was having when I was diagnosed, this can still be handled by a couple Tylenol or Advil. I think part of why I'm not more upset about this news today is that part of me is glad to know it wasn't just paranoia. Turns out I know my own body a little better than I thought. Some part of me knew something was wrong, that the Herceptin alone wasn't getting the job done. So Sterling & I were both bracing ourselves for even worse news today: that the cancer had spread to my bones, or somewhere else that would equal "no hope". Hope, even a small one, is important, and we still have it.
After dropping Sterling off at home, I had to start sharing the news. I went back to work to tell them & try to tie things up as best I could. I felt so bad - barely back two weeks & now I have to leave again! I was just starting to find my stride again. Sigh. But they were all wonderfully supportive, as they have been throughout this whole ordeal. Tonight I spent on the phone, calling family & friends. Again, I am overwhelmed by everyone's love & support. I am so blessed that way. I tells ya, if love could cure cancer, I would be cured a hundred times over by now. Thank you all.
Chemo Round #10 starts tomorrow. Tomorrow night at this time I will once again have a baby bottle full of poison dangling around my neck. It's discouraging, but what can you do? Soldier on. And hope. Always hope.
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!
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.
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.
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