Feelings Vent

I already feel bad enough about…well everything, so passive aggressive texts from my mother about how I obviously don’t want her to come see me are annoying af, and make me feel even worse. I don’t need this from her or anyone right now.

For the record, I’m not seeing most people outside of D, the kids, and my docs. I occasionally see a friend, but not often. It’s not that I don’t want to see my mother, but she lives like two hours away, and it’s not easy to plan when I don’t know how I’m going to feel on any particular day. I’m forced to cancel plans constantly. Oftentimes the day of. Ugh I’m just so annoyed by this right now. So much so that I haven’t responded, and it’s been over 24 hours.

On the other hand, as a mother, I get how she must be feeling, and I feel guilty about it. But I’m the one who is dying, and we have to do this on my terms. And I’m just not ready to say goodbye to her yet. I’m not. The next time I see her will almost certainly be the last. Is it surprising I’m not in a mad rush to set that up?

Plus, she’s acting like she wants to come down here and take care of me, which is just not going to happen. We don’t have that type of relationship. I love her, but I’m not going to pretend like we’re something we’re not.

I just needed to get that out. It’s been festering.

I’ll likely reply to her tomorrow when I’ve had a chance to figure out how I want to do this.

To radiate or not…that is the question.

Another day, another trip to the doc. This time it was my fancy new eye doc. Dr. C. Did you know there are eye plastic surgeons, because I did not?! He was a cool dude. Said it’s def cancer and that he agrees that whether or not to radiate depends upon my life expectancy. He told me that the dry eye will really suck (he actually said suck like several times), and isn’t worth it if I’ll only be around a few more months. On the other hand, if left untreated long enough, I will either lose sight in that eye or get double vision (and need an eye patch). I enjoyed how straight forward he was. It didn’t hurt that he was hot as fuck. Lol.

I’m supposed to start rads tomorrow afternoon. I’m going to cancel it so that I can talk to Dr. B on Thursday. I plan to ask her what she would do if it were her instead, and hope she’ll woman up and give me a straight fucking answer for once. I trust her and will do what she says.

PS: I also liked that he said eye biopsies are absolutely traumatic and he totally agrees it’s unnecessary at this point in the game.

January Always Feels Like The Longest Month Ever

I’m feeling a bit depressed after reading over my CT. Reading in detail what’s going on inside my body is terrifying. I’m kind of amazed I’m still alive, tbh.

One of my cancer friends is on the struggle bus big time, and I’m scared for her. For both of us. The end is extremely fucking nigh.

I can’t figure out anymore if I’m scared to die or just resentful and sad that I’m forced to leave the party early.

These are the things I ponder when I don’t keep my brain occupied.

Yikes

I read my CT scan results today, and damn it’s scary.

I couldn’t get out of my house to make my oncologist appointment, because of ice, so I’m rescheduled to Thursday. I’m hopeful that this delay make it easier for me to see Six at the theater on Thursday night. Normally I can rally for a few hours post chemo. The steroids help prop me up. I’m determined to see this damn show. It’s the one show this season I really care about seeing. I’ve already seen a lot of the others.

Anyway, back to the CT…it has me freaked out. How much longer until the other shoe drops?

That’s just the wrap up section. The other three pages go into scary details. Sigh.

This is why I’m not happy about hearing I’m stable. I’m not really stable. I’m just not bad enough to risk blowing a med that we can’t yet tell for sure is working.

Wow…really??

The CT scan showed that the cancer is stable. I’ll get more details on Monday, but this is obviously good news. Very unexpected. I’m kind of shocked, and trying to just enjoy it instead of thinking about how it’s just temporary (or maybe wrong somehow, etc).

Apparently it also showed a possible blood clot in my pelvic area, so I have to go get an ultrasound tomorrow afternoon. Hopefully that doesn’t turn into a whole thing.

Happy Friday Eve! We have the kids tonight and plan to have a celebratory dinner out.

Palliative Care

My palliative care team is my doc (Dr D) and Harry, my social worker. They are amazing, and I’m so grateful for them.

We had a virtual visit this morning. It had been a while, so we had lots of catching up to do. There was laughing and crying. We took the full hour.

She’s adding some new meds into the mix (liquid methadone), and tweaking others. Having a doctor on my team whose entire focus is my quality of life is definitely a blessing. If you have MBC, you should def check into palliative care. It’s a game changer.

Dr. D thinks I should give more thought to whether or not radiation is the right treatment plan for me, given everything. She had valid points. The potential side effects, like extreme dry eye, may be more problematic than the supposed benefits, especially given that the eye doesn’t typically bother me. More to think about. I certainly have enough problems as is.

I guess I’ll talk it over with Dr. B once we get my scan results. I do know that I’m not ready to give up yet. I’m down to start another chemo, if that’s what needs to happen.

I’ve been feeling slightly more like myself this last week. I wish I knew why.

The Mask

So I went this afternoon to have a rads mask fitted. It was essentially like a hot tennis racket material that was molded to my face shape. Then they marked all over it so they know where to focus the radiation stream. I start treatment on the 27th. It will be every day (except weekends) for ten days.

Yes To Rads

I woke up around 5 am with serious pain in the cancery eye. The worst it has ever been. Oxy and Tylenol barely helped. It hurt so much, I thought I was going to vomit. Luckily, I woke up several hours later and the pain was much more manageable. Kind of a weird coincidence that this happened on the same day as my appointment with the radiation oncologist.

Dr. Z wants to do ten rounds of rads to the eye. The side effects aren’t great, but what can I do? I’m going on Wednesday afternoon to be fitted for a radiation mask. That sounds super pleasant. I’d roll my eyes, but it hurts now. Lol.

Tuesday

Chemo cycle day 2 always sucks. Today is no different. I skipped the trip to see the eye doctor and stayed in bed. Maybe I’ll reschedule. Maybe I won’t. I kind of don’t care anymore.

Today will be a stay in bed and rest sort of day. I’m going to try to drink a lot of fluids to flush the toxins from my body. It sucks to think this treatment isn’t helping and I probably did this to myself for nothing. These are the times I start to consider stopping treatment, calling in hospice, and getting my best quality of life while I still can.

I’ve recently become friends with Aly who has stage 4 colon cancer. We met on instagram, and we are in very similar places right now. It’s nice to have someone to chat with and vent to about how much this sucks. Someone who truly gets it. I worry that neither of us have much longer. We both agree it is highly unlikely we will be here come summer without some sort of miracle. Still – I’m grateful for her friendship.

I’ve met some really amazing people over the years because of cancer. That’s the silver lining.

More Depressing Cancer Stuff Because Of Course

My tumor markers are still up. No bueno. High af and not in a good way. Lol

So I’m seeing this ocular plastic surgeon tomorrow, apparently to see if I need a biopsy, which I have zero intention of doing, so the entire thing seems pointless. Dr B mentioned that Dr Z may not radiate without it, but I’m out of fucks. I don’t think it really matters at this point, ya know?

I had chemo today. Another round next week and then scans. It seems pretty clear the treatment isn’t working. Not sure what happens next.

Anyway – just more depressing bullshit and I’m over it. I need something good and not cancer related to happen to me. For once.