- 7th November
- 28th September
A huge thanks to everyone who donated - much appreciated! It’s always a wonderful surprise to see how far a little fundraising can go.
I will definitely be planning a larger scale fundraiser probably next summer and am hoping to do a walk (probably with some family, but more details to come in the future) for colon cancer. It’s a very under-funded and neglected form of cancer (unlike say, breast cancer), and I’m sure with even more effort I’ll be able to make a difference.
Thank you again!
- 10th September
Holy crap, this doesn’t happen to me. I’m always the person who’s prepped for the “worst case scenario”, so the “best case scenario” kind of hit me from out in left field this morning.
I was expecting a “no sorry, your CT scans show that you’re not a candidate for surgery” from my surgeon today. Instead I got a, “no, everything looks more or less on track” response.
Yeah, that’s right, this might fall into the qualifies as good news category, which I’m so unaccustomed to, it feels weird. Like, you just won some sort of lottery weird (which is really what it is). So, it looks like while there has been some small growth in some areas, mostly things are the same or better, and my surgeon isn’t deeply concerned about the part that has shown some very minimal growth.
So this is the plan:
At least two more rounds of chemo after today (this was #10 for this year), which will bring me to 12 this year and a GRAND TOTAL OF 24. Then, I will get probably 4 weeks off of chemo to ensure my body is ready for the OR. At that point, my surgeon would like to do a small laproscopic day surgery (basically two small incisions with a camera) just to scope things out and make sure there’s nothing going on in there that isn’t popping up on a CT and they couldn’t deal with in a major surgery. A key point to emphasize here is FOUR WEEKS OFF CHEMO. There will be a large, ridiculously crazy party.
Then, should this little day surgery go well and they feel good about things, I’ll get signed up for the major 20 hour surgery also known as “Cytoreductive Surgery with HIPEC - Hyperthermic Intraperitoneal Chemotherapy”. See previous post on how that all works. My surgeon gave me a seventeen page document (double sided) on the details and told me to study up. Pop quiz next time!
So fingers crossed for this outcome. It’s an intimidating surgery, but the best case option for me at the moment. My surgeon and oncologist are going to work on better coordinating my chemo/surgery schedule, but it looks like late November.
Let’s all do a little happy dance!
- 10th September
- 25th August
This however is an extremely challenging question, as it is for anyone really. Am I extremely frustrated, constantly challenged and sometimes miserable? Yeah, that too. But overall, I think life is pretty decent, all things considering. I think this may come from a place where I feel the challenge to lead a happier life because of this wake up call that being diagnosed brings you. And it’s a paradox, because on one hand, you’re finally seeing that moment that you could lose it all and constantly being faced with your own mortality, but also realizing it could all be over in an instant and you want to have made the most of it. Also, while you’re trying to make the most of it, you’re still fighting with this whole chemo business which is making you feel like shit.
So essentially: the good weeks are amazing, but the bad ones are complete crap and I’m struggling with them. It seems simple to summarize, but when I feel physically crappy, it is also emotionally and mentally draining. And the more I have to keep on doing it, the more difficult it becomes in all of those categories (medically, chemo is cumulative).
And I know as soon as I stop chemo, I’m going to be the happiest person, regardless of if I am stopping for better or worse. I’m working on figuring out some things I’m going to get out there and do, because we really need to stop saying we will, and actually get to it. In the meantime, working on developing some things that don’t involve travel that I can do now!
(My philosophy on “bucket lists” is not to be too hung up on the list part however. I don’t want to die thinking, crap, I still have ALL of these things I was supposed to do. So I’m only adding things pretty much as I find them plausible so I don’t get caught in a trap of regret. Recent google searches have included the cost of jumping out of a plane and scuba diving….)
- 31st July
25 has not been one bit depressing, I’m not having a quarter century crisis, and I’m not freaked out that I’m completely, definitely in my mid twenties and approaching the late twenties.
This is a new perspective of life, so everyone else born in 1988, stop freaking out! Be happy that you are guaranteed to turn 25. You’re probably also pretty much guaranteed to turn 30. Not everyone is so lucky or so sure. I don’t want to be quite as depressing in this post, but it’s the reality. I’m so happy I’m 25, and it turns out a major life goal for me will be (eventually, fingers crossed) turning 30. Thanks to everyone who made my birthday so special and came out to celebrate. There are few evenings that have made me feel so special and loved. Cheers to hopefully many more years of celebrating!
- 31st July
…because those aren’t remotely depressing numbers of chemotherapy to have undertaken by the age of 25. I’ll try not to sob too much about it, and remember what I have to be thankful about. But this post is about it sucking, because I’m feeling extra sucky about it today.
The thing about chemo is it gets worse. At the beginning, you’re just getting into things and sorting stuff out, but if you’ve been reading, you’ll remember that chemo starts to accumulate in your body. So, physically it gets worst. But it also gets emotionally worse. You start to get run down and feel like it’ll never end. The middle is the worst of it, because you’re not just starting, but at least at the end its almost over and you can start to think about MAYBE having a bit of a life again. Or at least just enjoying some food for a while.
There were a number of people in chemo this week ending their 12 standard sessions and starting to think about moving on with their lives. I really wanted to be happy for them, but really I just wanted to let them know that you can come back. Don’t write off 12 sessions as it being over, because it’s never really going to be over. You’ll live in fear of your next CT scan for the next five years at least. And you can be me, trying to go back to your regular life and then starting it all over again.
Okay, done complaining, I’m sorry (kind of). It’s really hard. There are great things to be taken from this experience, but it is extremely draining and I’m feeling it.
The update on my health however is this:
I took a bonus week off chemo so my weeks have been shifted in the hopes of me being able to attend a couple of things I have been looking forward to this summer and fall. So this is a chemo week for me, and next will be a good one. I think I spoiled myself a little with two weeks off though, because I swear this one feels worse! After my next session, so round 8 I will go in for another CT scan to reassess how things have been working. Should I pass this “CT test” and things either remain the same or become better, I will be hopefully a good candidate for surgery (see post on the 20 hour surgery, just below). Fingers crossed, it is TERRIFYING but absolutely what I want. And while it will be a much bigger surgery and is extremely daunting, pain is much better than nausea and this will be temporary. If this CT goes well, I could be lining up for surgery about 2 months after that (my body needs time to recover before heading into anything of that scale).
So, that’s it! Round 7 complete tomorrow, bringing me up to a grand total of 19 sessions of chemo in less than 18 months. I’ll have to throw a good party when the total rounds surpass my age! (which will be soon enough)
- 31st July
- 10th July
Today in the chemo room I rolled my IV poll over to the bathroom and had a little bit of a wait. No big deal, so I sat myself down (it really was a bit of a wait, it’s cool though, we all got colon cancer and take your time!) and waited in a chair nearby and smiled at the woman in the bed next to me. We sat in silence for a few minutes, and finally smiled again and said, “wow, I just can’t but help admire your hair, you have such beautiful hair, are you going to get to keep it?” I said yes, thankfully I was, and I knew it wasn’t going anywhere because I’d been on chemo for so long. She was bald, with a bit of patchy hair and said her eyebrows were starting to go too. I’m so lucky to be able to keep what is actually a major thing, and get to feel normal.
I told her I thought she was rocking the look, and she said “really, do you actually think so?” I said, absolutely, and I meant it.
- 25th June
Well today was a bit of a day, round 5 of chemo (total chemo count up to a whopping 17 now, but that’s the least depressing part of this post). But also had a meeting with my oncologist, who confirmed that my latest CT scans taken two weeks ago are looking pretty good. By pretty good I mean either the same or the tumours are shrinking (by up to 20%), which is really good news. It means this chemo is working, which is fantastic, but also that I won’t die of anxiety and am also still a candidate for surgical options. Now, before we all go out and buy some celebratory champagne, let me break this down a little.
Big deal. Like, 20 hours long (people operate for that long in real life?! Yes.) I may have to stop watching Greys Anatomy now in preparation for the fact that my life is an episode of the show, except no doctors are that good looking in real life either. But it makes you wonder who’s sex life is being discussed while you’re open on the operating table. Okay, but back to surgery. It involves opening me all the way right up (we’re talking a surgical scar that will put the others to shame, right from where your ribs separate out to my pelvic bone); it will involve doctors going in and searching out anything that looks cancerous and taking it out. Sounds simple, but not entirely. If the cancer has invaded other organs, they may look at taking those out too. Scary? Oh yes, but guess what? Turns out you don’t need a lot of them. Everything looks contained in one cavity in my abdomen, which for where I am right now is considered good news. That means, my lungs are good, my liver looks pretty decent and my kidney is well out of the way. Those seem to be the key ones. The ones you don’t need as much that I could be living without include: stomach, small intestine (although you do need part of this), the rest of my colon (large intestine), gall bladder, spleen, uterus and ovaries. Now, I’ll admit I’m fairly fond of my stomach and would miss that, but turns out eating small frequent meals won’t greatly affect my quality of life. Intestines will adapt, as mine have before. Nobody needs their gall bladder really. Spleen will affect my ability to fight off some things, and it sounds like may affect my ability to travel, and will need to be put on things like antibiotics sooner. I recognize that this may change and I may feel differently about it, but this troubles me more than losing reproductive ability. I think (and see a former post on how chemo may have ruled this out anyways, and gosh, after 17 sessions I don’t really know how it hasn’t!) but this is obviously a different level. Still, I’m going to stick by that that ability isn’t really a defining feature of my life. I love kids and hopefully this all works out and that’s possible, but it’s also very far from where I am in my reality right now, and I think I have to just focus on getting through this. It will make me sad for sure (but really think how skinny I’ll be), and not to be too depressing about it, but my focus now as I look to planning my upcoming 25th birthday is seeing the next 5 or so years. If I can do that, I really think I can do anything, and this is something I’ll be able to sort out then. The world won’t end, and I have a great shrink.
Part two of surgery is a little strange, but ultimately probably good. It involves filling the open abdominal cavity full of chemo drugs and bathing it essentially to ensure WE GET IT ALL THIS TIME. Because, as my oncologist put it, it’s not really about one good CT scan. I did one good CT scan last year, and that part is the “easy” bit. The key is not one, but years of good CT scans. So that’s what we’re gunning for now. Now you should all know that this surgery is NOT for sure. I need to pass one, maybe two more CT scans that show I’m on track for it, and would be a good candidate (so tumors remaining either the same or getting better). This means many more months of chemo, which will not be fun, but it feels better to be working towards a goal instead of aimlessly signing up for more and more sessions. I can’t organize a countdown for how many more (so please if you’re reading this, stop asking because I don’t know) and that is extremely discouraging to just trying to plough on through more without an ultimate goal. So its scary, but I’m gunning for this surgery. It’s definitely still a ways away (we’re tentatively aiming for something probably like winter) but hey, that is some significant planning for my life, which is a big deal. In a cancer world, uncertainty becomes normal, and even if it’s tough or scary news, it feels pretty damn good to hear something somewhat positive.
PLUS: I worked it out with the secretary so that I didn’t have to get chemo on my 25th birthday. I hate that this is a win, but I’ll take it.