I used to love food. Almost any food, except really spicy stuff. I loved cooking and baking. I loved savoring every morsel that went into my mouth and being a slow eater, this made it even better.
Since I’ve been on these drugs, it’s been getting harder and harder to enjoy food. My taste buds are shot and finding something that tastes better than cardboard isn’t easy. I eat a full meal at dinner so I don’t get nauseous from the drugs. Ok, so it may not be a proper meal, but enough to fill me up.
For a while now I haven’t been eating properly. I find something that remotely tastes as it should and I’ll eat it for days. Frozen Italian meatballs, KFC, steamed potatoes and carrots, cherry turnovers.
At this point, I’m more concerned with getting food into me than I am about nutrition and my weight.
I spent today remembering the people in my life who died from cancer. There is too many of them. I thought about everyone in my family who has had cancer. I thought of all the others in my family who have been lucky enough to not get this wretched thing and hope they never do. I wish I could take away the fear I know they carry but the future is a big unknown.
This thing has the ability to take away a person’s spirit, their dignity, their personality. The people I knew who died from it did their best to hang onto all of these things even with death taking them far too early. I hope, as time eats up for me, that I’ll be able to hang on to them too.
I’ve been feeling crappy for about a week. My ears have been bothering me, I was prone to ear infections as a kid, and the fatigue has been huge. For a couple of days my lymph nodes in my throat ‘felt’ swollen but they didn’t look it. Been having crappy sleeps so I’ve been napping. Lots. I’d get up at 4 or 5 am then back to bed by 6. I’ve been having 2 or 3 hour naps in the afternoon most days and back to bed by 9ish. Just overall have felt really crappy. Shopping was hard. I’d get so tired half way through it but I needed to eat. My friend brought me dinner the night I felt the worst.
I started my cycle of Ibrance on Tuesday so I can’t really pin it on that, although I wish I could. It really freaks me out when I don’t feel the 80% I’m used to now. I am feeling a bit better but as an MBC person, anything out of the ordinary is concerning.
My mom is going to be staying with me tomorrow night which means trying to get rid of most of the cat hair (more energy sapping tasks) and sending my cat to my friend’s for the night. Hopefully it’ll be enough that her allergy won’t kick into high gear.
Had my oncology appointment today. We were talking about my new side effects that have shown up this month. My nails feel like sandpaper and are cracking and splitting, I had liquid diarrhea for 4 days at the end of my Ibrance cycle, I’m falling asleep just sitting on the couch.
My neutrophils are still at .8(bad), my tumor markers are still rising, now 96(bad). The CT doesn’t register any change with the current tumors, so in his words, “still stable”(good). Gotta love the good news/bad news. He says he goes more by the CT than anything else, but we both know that the Ibrance is starting to lose the fight against the cancer. He’s lowered my dosage of Ibrance to 100mg to see if my my neutrophils increase and the side effects lesson. It’s the next step in the protocol apparently, but it’s also the next step toward the last step. I have 8 weeks of freedom until I see him again.
I’ve started seeing a counsellor. It was really hard to find one that had an understanding of what I’m going through, but I found her. And she’s helping me deal with this roller coaster ride. She’s unconventional and an out of the box thinker and perfect for me. She’s offered to come to my place when/if I need her to instead of going to her office.
Here’s to a stable 2020.
2 years ago yesterday my oncologist confirmed I had MBC. Because I already knew, by the bone scan and a visit to my GP, it wasn’t news.
I remember one of the first things I did when I suspected I had cancer again was to look up bone cancer because it was my hip that was the problem. I also remember after my first couple of internet searches, that I decided to hold off until my official diagnosis to see what it was all about. I so wanted to be wrong.
Knowledge is power, right? Not so much. Researching MBC didn’t help much. All the stuff I found talked around the fact that it’s terminal. Most of the stuff I found talks about quality of life, and treatment being for the rest of my life. Very rarely do you find an article that out and out tells you that it’s terminal. And the stats? They’re scary.
I get that people don’t want to talk about it. Who wants to be reminded of their own mortality? What that does is isolate those of us that are terminal. When we start losing our normal and we have to find a new normal, we also lose friends, family, work, in that process. We mourn our so called normal lives and try to add life to our new normal. It’s not an easy thing, learning to live this new life while trying to ignore that it’s going to end sooner than anticipated.
“Living while dying is the strangest thing.” (to quote a comment posted to my blog). And it is.
Here’s to hoping I’m here in another 2 years.
They got the catheter in first try again this time. That’s a good thing. The bad thing is I’d already worked myself into a state before they even tried to put the needle in. I can handle everything else, the noise of the machine, the hot feeling in my head and the feeling of needing to pee from the contrast dye, I just can’t handle the needles, especially when they can’t get it into my vein on the first try.
Today I had the thought that I was probably lucky I’m still getting CT’s. When they stop, I’ll be in trouble. I’ll try to remember this at my next CT.
November and December are difficult months for me. 2 years ago in November I had a bone scan that showed the MBC. I was able to see the scan, able to see the bright white of the cancer and it was a punch to the gut. I didn’t see the oncologist until December for the “official” results but did see my GP who confirmed what I knew.
I’ve also started seeing a counselor. Took a bit to find one that could understand my situation but I found her. I’ve only had one session with her but so far we mesh. It’s going to be interesting having her as part of my journey. She’s genuine and promises she’s the “queen of letting go”. She asked what my “end game” would look like. For me it’s a cabin in the woods with a fireplace, a TV, and my yarn and cat where I can just fade away. At her suggestion, I shared this with my mom and sister. They weren’t surprised by it.
Last week I went home and spent time with my mom. My sister and niece picked me up from the ferry so I was able to talk to my sister too. About what I want and don’t want at the end of all this. I’ve let them know I don’t want them to have to look after me. I want to be in a hospice or the hospital but not in their homes. I don’t think it’s fair to them. It’s going to be a hard enough time for them to deal with as it is, them being with me 24/7 would just suck. I want them to visit only when they feel they can. I love my family with all my heart and don’t want to put them through any more heartache than necessary. And I’m fine being mostly alone.
One of my aunts drove me back to the ferry so she was trapped with me and had to listen to me ramble on about having MBC 🙂 Seriously, it was really nice to spend some alone time with her. We haven’t had a chance to do that in a long time.
I won’t be going home for Christmas. It’s never been my favorite time of year and this year there isn’t anyone to look after my cat. Mom isn’t pleased but I’m not disappointed about it, instead, I’m actually looking forward to being alone.
Unless there is some divine miracle, because of my last few blood tests, I know that the Ibrance is on the downward slope and is starting to not work anymore so I’ve been spending a lot of time thinking about my next steps. I’m pretty sure my next treatment will be chemo. I don’t like chemo. Hated it the first time. It was painful and I was so sick. I don’t want to be there again. To me that isn’t quality when it comes to living, being bed-ridden for a week. Maybe I’ll try it once and see what happens, maybe I won’t. We’ll see.
Been also thinking about organizing my life, “getting my affairs in order” as they say. There’s a book I’m going to buy to help with that. I’ve also got a computer program to record (video and audio) messages to my family.
Having to make tough choices that impact everyone around me really sucks. Having to be completely selfish because of MBC really sucks. Having MBC just really sucks.