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.


  1. Holy fuck. Wait is that not constructive? Big internet hugs. On the other hand I read most of a really long article in the month's Harper magazine about the benefits of fasting. Less extreme reactions to chemo etc. Of course they get to keep water down and don't lose it 3L at a time. And it is all mostly tested on rodents. http://harpers.org/archive/2012/03/0083829

    \what novels are you reading? hugs. Big big hugs.

    1. Wow. What hell you have been going through! I cannot imagine. You are strong babe. Keep up the fight and do not lose hope. You wrote this a week ago. I hope you are feeling a bit better but you have been awfully quiet. There are a lot of people that care for you. I know it must be hard and even with all those people you can still feel lonely cause you have to go through all those tests and chemotherapy's and pain.
      Love you. (I am not quick to say that to someone I guess because I am from Europe?) lol.xxxx