Melanie started her chemo yesterday. No update yet on how it went.
Oz ,'First Date'
If the Apocalypse Comes, Beep Me
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Hey All, 1st round of chemo went okay - except of course they didn't warn me I wouldn't be able to shower for 2 days while I was hooked up to the infusion pump. I definitely would not have showered the night before had I known. The chemo went okay, nausea meds are working, so hours at the infusion center and 2 days on the pump were more a nuisance than anything else, really. Other than getting tired pretty easily and having weird stuff still hanging off me (surgical drain, hopefully getting removed next week; ileostomy, unfortunately going to be with me around a year), this whole situation just seems really unreal.
Dammit, the computer just ate a long ass post. Let me try to recreate...
Hi All, I saw Shir asked about me in Natter (Hi Shir! I love the pics of you & Nilly & Jess on FB!), so I thought I'd give you a quick update. I've now had my second round of chemo, still mostly side effect free. I still have the surgical drain, the doctor doesn't want to take it out while it's still producing as much as it is. It's slowing down, but not enough to get it removed at my next appointment on Thursday, I'm afraid. So it's probably with me at least another week-ish. It's in my left butt cheek, so it's uncomfortable, and changing the dressing is kinda tricky, but I'm managing it. The ileostomy, and the surgical sites from it are doing okay. Thanks to the drain and the chemo pump every other week, the ostomy now seems like a walk in the park. (Still gross, and weird as fuck, but manageable). I still tire out *really* easily, but otherwise I'm doing OK. Assuming no additional complications, I'm returning to work (remote because of the chemo) on Monday, the 20th. Due to multiple complications, I still haven't gotten any payments from State Disability. I'm thankful I have some savings to cover bills in the meanwhile, but I still really want to start getting those checks to build the savings back up.
And this Friday, I'm going to see Hannah Gadsby in LA!!!!!1!!1111!!
Maria's mother is in the hospital ICU not doing well, they have signed a DNR, but she is on breathing tubes. The family is not discussing it on FB yet, so please do not mention it in any public location there.
Maria’s mother has passed.
Brief Check In post: Started back to work (remote) on Monday. Some things on my work laptop that I thought were properly set up, proved to be...not. I'm working on workarounds and trying to coordinate with IT. And of course, getting through 6 weeks of emails...sigh.
And yesterday was my 3rd round of chemo. I had to squeeze in another appt before my chemo appts yesterday, then there were really bad delays at the infusion center so it was a long-ass day (1st appt 8am, got out of there abt 4:15). But I still seem to be tolerating the chemo OK. Almost no nausea (and no vomiting, knock on wood), fatigue, and this totally weird tingly reaction to cold. But, considering how bad it could be, I'm counting myself lucky (as far as one gets lucky in these circumstances).
And I had a PET scan last Monday, which seems to show no additional cancer, so that's also a qualified yay.
Still have the (M-Fing) surgical drain. I just pushed my appt tomorrow to next week (again) because it's still producing too much. Fingers crossed for next week; it's getting beyond uncomfortable and wandering into painful territory. A literal, as well as figurative, pain in the ass.
But all things considered, I'm doing alright.
Many of you saw my FB post, the details I didn't share there - my nephew, David, ended his own life. Mid-30s, 2 kids, sweetest guy in the world. Most of us had no idea he was even depressed.
If you need help, please reach out. ISTG, people love you and will be more hurt by your absence than you can ever know.
Fifth round (of 8) of chemo down. Still tolerating it okay. Saw the dr for the surgical drain today, which is, unfortunately, still with me. But at least the dr took the time to really communicate with me about it, which helps a lot. I was getting really frustrated feeling like I was forgotten or they couldn't be bothered to talk with me.
My nephew's celebration of life is scheduled for early September. Right after my last round of chemo. I'm still alternating between heartbroken and so mad at him for taking his own life when I'm going through so much shit trying to extend mine.
Time for another check-in! This week was round 7 (of 8) of chemo. Met with the doctor instead of the NP this time so we could discuss the MRI I had on 7/29 (which was a complete cluster, but at least it got done eventually). Possible TMI: There are apparently 2 masses in my colon (I thought only 1), very near each other, so not a surprise the GI doc had a hard time with the colonoscopy - not much space to get through. BUT, they are now "necrotic" and the fact that they are slightly larger than at my last MRI is not a huge surprise because my last MRI was a good month or month and a half before I actually started chemo. Because I felt like I needed the reassurances, I made the doctor specifically agree with the statement(s), "So it looks like the treatment is working as intended. I'm not likely to die. And by sometime next summer I will very probably get to have a normal life again." And he agreed! I'm pretty good at compartmentalizing, and just assuming that things will work out, and not allowing myself to dwell on the shitty very much. But I really felt like I needed the reassurances right then, so I'm so pleased that Dr. H was in agreement! One more chemo infusion, then I get around a month off then start radiation (paired with chemo pills). So that will be the next adventure.
Meanwhile, our timeclock system keeps stealing time from me and the person in finance who understood the system left and the new person is learning on the fly because I have to keep emailing her the screwups. We get a tiny amount of sick time so I have to use vacation time to cover these long-ass chemo days, but the system keeps taking more time from my balance than I requested and erasing hours I was actually on the clock. So now I'm cutting it super-close trying to make sure I have time available to cover the hours I'm at the Dr. So that's a lot of fun when I definitely don't want to be wasting my somewhat limited energy to keep checking up on a fricking computer program that should just process the time as entered. As I keep saying - everyone knows that cancer is scary as hell, but no one warns you how incredibly INCONVENIENT it is!
Hey, All. News of the (my little) world: The dr finally took out the surgical drain on Wednesday (Hallelujah!), but then Wednesday night I started feeling sick - chills, aches, mild nausea. I was somewhat better on Thursday, but took the day off work because I was still draggy as anything with fatigue. For whatever reason, it either hadn't occurred to me or I lacked the executive function to overcome my fatigue, but I didn't take my temp until Thursday night - 100.5. So I finally got to use one of my at-home covid tests - negative. Friday morning it was 100.4, so I called in again. As Friday is my usual home health nurse day, I filled her in. She checked and said the wound itself looks okay, and my temp was down to 99.9. She had me send a message to the dr about the whole thing, which I thought was ridiculous at 4:45 on a Friday, but she was sure that people check the messages and forward them on. But of course, no response until this morning. My temp is back to normal finally and I feel OK. But when the person who called said my doctor had an opening today, I went ahead and took it. A unicorn like that felt like a sign. So I'll have them check the wound is healing, see if they want bloodwork to check for infection and whatnot. (NB: nurse had me send the msg to my GP and my surgeon. Still haven't heard back from my surgeon. Really starting to take a dislike to him).
In more directly cancer news, my last chemo infusion was unhooked 9/2. I meet with the radiation oncologist this coming Wednesday, and I have another MRI that afternoon. If my math is correct, I'll start radiation - with chemo in pill form - in early October. More (probable) good news - I asked my chemo oncologist how long I'd have to be on chemo after surgery #2 & before surgery #3 and he said possibly not at all! He said as long as the surgery goes well and seems to get everything, I won't have to do more chemo!