03 March 2012

Breaking, Bouncing Back & Breaking Again

So after the whole blood clot scare half-way through my new two-week chemo on Thursday 16th February, I was headed into what I hoped would by a nice, quiet, non-chemo weekend, a time of relaxing & slowly building back my strength a little every day. And that was kinda how it went, until Sunday night, when my tummy seemed to be getting a bit bloated & hard again, like the ascites were coming back.

I wasn't sure how close to chemo we could drain ascites, or if the scheduling of the two things affected each other at all. I also hadn't seen Dr, Katakkar in the flesh in two weeks, so I didn't know if he was planning at this point to continue on for a second round of the every two-week compromise chemo (tentatively scheduled for the following Friday 24th February), or if he was planning on switching me to yet another new regime. (The only problems that come along with having a brilliant & exceptionally busy world-class oncologist - I'll take them any day of the week!)

So Monday morning, although the ascites did seem to be coming back a little, they weren't horribly bad as yet, but I thought safest to call the Cancer Agency & let them know about this new development. They decided that Katakkar did want me to come in that day & see me for himself. So off we went to spend a bunch of time at our home-away-from-home. They ran a bunch of tests & bloodwork in the meantime, but by the time Dr. Katakkar found a few minutes to squeeze me in, he was hemming & hawing on whether to bother draining. It was right at the borderline of being worth draining. If he did drain, it might not be particular successful, and if he did it today (Monday) it might just build up again so bad that he'd have to do it yet again before chemo on Friday (I was definitely getting chemo Friday, he just wasn't positive what type yet). So since the ascites weren't affecting my breathing, and since by now I knew what to look for, I was sent home with the instructions that if anything changed between then and Thursday, when I had my pre-chemo doc appointment anyways, that I should come in.

So Tuesday and Wednesday I took it pretty easy, taking advantage of being bloated & confined each day to just lounging around in bed and reading novels, trying to hold out till Thursday morning. Thursday morning was definitely time though: I got up, took a few swallows of water to take a painkiller, and promptly puked. No room left, time to get drained!

They agreed at the BC Cancer Agency. This time they filled all three bottles right to the brim - 3.1L. I was joking with the nurses how svelte I felt after that! Of course I'd barely been able to eat anything in the preceding days (less & less room) mostly just trying to drink a few swallows of Boost every few hours to try to get some calories into me. Keeping up my weight has become a big concern, so Sterling & I went & picked up a decent sized lunch of solid food in small bite-sized pieces (sushi - seemed perfect at the time, would live to regret). We went home, had a late lunch of miso soup & noodle salad, saved the actual sushi for a dinner that I definitely had to push myself to finish (8 tiny little salmon rolls - like I said my little tummy is pretty shrunken) but I was so proud of myself for taking advantage of the opportunity to eat as much as I could when I could on Thursday afternoon/evening.

Chemotheraphy #12 ~ Friday 24th ~ Wednesday 29th February 2012

Even dozen of chemos! A new regime, but since it's not a nice documented BC Cancer Agency approved formula, I'm not going to go into any details. Suffice to say it's one new chemical, infused every Friday, for six weeks. There's a second chemical, infused on the first & fourth Friday as well. Dr. Katakkar is hoping hitting the cancer more frequently at a lower dose will mean the ascites don't have time to build up again. We are hopeful too. It also sounds that this might finally be to protocol that causes *all* my hair to fall out, not just get really thin. In prep for this, I got my wonderful sweet friend Mandy to shave me down real short again Thursday.

So Friday, was Freaky Friday all the way. Everything that could go wrong, did. There were 2 anti-nausea pills I had to take & keep down at home before chemo Friday morning. I slept horribly Thursday, woke up feeling awful & out-of-sorts, and so sure that I was not going to be able to keep these drugs down. I was so careful trying, that I decided I couldn't risk taking anything for the pain I was in, as those drugs often make me puke too. So by the time we got the hospital, I was in pain, I was feeling nausea, and generally awful. One thing about me, I can't hide how I'm truly feeling, everyone knows, so the nurse didn't want to start my treatment until the doctor looked at me & was sure I was up for it. So wait around for that.

Then, there were issues with my port. Mostly, my VAD port in my chest, through which they draw my blood tests & inject my chemo & other drugs, has been a godsend, I've had very few issues. But lately when trying to collect blood samples it's been finicky. Then you raise your arms, turn your head this way & that, cough cough, and hope it'll start to flow. But the last few times they've said I'm probably headed towards a CATH flush. Over time a bit of scar tissue can build up at the end of the port, and the CATH flush is injected for 2 hours, dissolves the scar tissue, and everything's happy again. The only probably being it takes two hours. And first they have to do an xray to rule out a positional problem, because even though a positional problem is less likely, if that is the problem, then the CATH flush won't fix anything & is a waste of time. So, off for a chest xray. And wait. Chest xray is fine. All good to go for the CATH flush. Except, lunch trays arrived. Normally, I avoid eating during chemo, but right now I'm desperate to sneak in any calories wherever, and there's a fruit cup with 4 apricot halves I think I can get down. Well, I eat one, and for the first time ever, I retch in the cancer ward. Fortunately I had a basin handy from when I was feeling lousy earlier, so didn't make too much of a mess, but still, it was vile. On the upside, when they went to do the CATH flush, it was no longer necessary - I guess my vomiting knocked it back into place.

So after that whole incident, they put some extra anti-nausea through my IV before finally starting me on the actual chemo. After all the other stuff, chemo itself went quite quickly & not too bad, two drugs, one I'd had before, and one I hadn't. Supposed to keep an eye on my finger & toe nails.

I thought I was ok by the time I got home from chemo that Friday night, even had my curling team over to visit as there was no game scheduled. But late that night something happened that really freaked Sterling & I out. I tried to drink a bit of Boost & puked a great deal - not that unusual at this point, but what I was puking up, was sushi I'd eaten more than 24 hours earlier. That shouldn't have still been in my stomach able to come out. It scared us.

We resolved for Saturday I would stick to drinking only fluids, including Boost, in small, a couple mouthful portions.

Dr. Katakkar wanted to monitor my blood levels very closely following this new chemo, so we were scheduled to go into IV Therapy on Saturday & Sunday (when the cancer centre isn't open) to get blood drawn. Of course, Saturday, we go down for our 9:30AM appointment, and they again have problems with my port, and end up finally having to do the CATH flush. So injected with that, come back in 2 hours or so, and get the blood test done.

We thought we were doing ok until late that night when I puked again. And then at 5AM, when I got up because I was in so much pain, and tried to take pain meds with 3 mouthfuls of fluid, and immediately puked them back up. That was when I said, we have to go to Emergency.

We were at Emergency from 5AM - 3:30PM Sunday 26th February. They were quite nice to us - a private room to protect my weakened immune system, they scrounged up a second cot for Sterling so he didn't have to go home but could still get some rest since he was working on call over the weekend. Things just take time. I had xrays, blood tests, and eventually a CAT scan. The worst was shortly after being admitted, when the doctor came in, I started retching uncontrollably, the nastiest stuff ever. It was like I was puking feces. That's when they thought my cancer had probably caused an intestinal blockage - that's what the tests were trying to find.

In the end though they couldn't find a blockage. The surgeon on call (picture a good'ol country doc) figured the pressure from my ascites was causing the blockage & me to throw up. Unlike Katakkar, he believed in draining as much as possible, and ended up taking out about another 4.9L - this after just being drained on Thursday!

We went home & then back to the cancer centre for followup Monday morning. And ended up back every single day last week, getting IV liquids & trying to get my nausea under control. I'm sad to say, not very successfully - I think I've puked every day. I'm on a liquid diet, and not even able to keep that down. I ended up getting

Chemotheraphy #13 ~ Thursday 1st March ~ Wednesday 7th March 2012

and then my ascites drained yet again - only another 3 litres this time, on Friday. I was scared of the weekend, with the cancer centre & my source of TLC closed, but we spend 8AM - 4PM at the hospital on Friday draining the ascites, getting my fluids, and getting home nurses set up for the weekend.

So today Saturday 3rd March... was a better day then I've had. Yes, I still puked up my dinner of chicken broth last night. And I puked this afternoon. But I've also had a couple bowel movements (I know, but we're WAY past TMI in this blog by now) which is a good sign, and I've just generally had a decent day. Maybe tomorrow will be the one without puking, finally? The nurses who came in to give me fluids were very nice, and another nice thing is I currently have two butterfly patches, one in each arm, one for my pain killer and one for one of the anti-nausea drugs, so Sterling can give me injections for those rather than the pills, which just haven't been staying down this week.

And Dr. Katakkar gave me another pep talk on Friday. He still believes I can beat this. He still has hope. So even though I've reached & passed my breaking point a few times this past week, I'm determined to believe too.

Thank you all for your continued warm wishes. Love you all.

16 February 2012

Blood Clots

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.

13 February 2012


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.

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.

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.

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.

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!