If the Apocalypse Comes, Beep Me
Birth, death, illness, new job, vacation...if it's happening to you and you want us to know about it, post it here. These threads are intended for announcements only. Want to offer sympathy or congratulations, or talk about anything? Take it to Natter. Any natter here will be deleted.
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!
For those who missed the FB update: last Tuesday the drain site started seriously "producing" - like soaking through a dressing in an hour. The guys in charge of the drain/drain site wouldn't have been able to get me on the schedule until the following day, so they had me go in to the ER. ER decided to admit me while they (3 or 4 different doctors) consulted on how best to handle it. I ended up stuck in the hospital until Thursday evening. They replaced the surgical drain & I got prepped for radiation (CT scan & tiny tattoos). Meanwhile my results came back from my latest MRI - the chemo either stopped working or never worked; my tumor is actually bigger. The surgeon said that as of now it's inoperable. So they moved my radiation up a week - I started on Monday. Every day M-F with weekends off, for 5ish weeks. With chemo in pill form because it's supposed to sort of boost the effects of the radiation. My chemo doc still seems cautiously optimistic that the radiation will shrink it enough to make surgery a viable option again. The surgeon said that even if it's more than they can handle, he can still refer me to UCSD Medical, that they have even more experience with cancer. So, I'm getting more scared, but still cautiously hopeful.
Oh lord, with all the pain and loss happening, I feel terrible just dropping out of the sky to offer a quick update and the annual vote request for Best of DC.
First, after the crucible of the last (mumblety) years, I can finally say that Cagney and I are safe and happy.
It's such a long, long story...and painful enough that it just doesn't make sense to share it all. Fill in the blank with life is unfair, people are trash, sickness and stress.
But now feels a little like a miracle.
I left DC, which I thought would never happen. Our new apartment is perfect for us. I'm safe. I took a huge break from thinking about work, or business development.
It honestly feels _weird_ to be this okay.
I'm back on track with biz stuff, including going back to school to learn the things I ought to have had in place decades ago.
While I will probably not run next year, winning this year's Best of would go a long way to bringing me new clients AND give me something to put on the new website I am building. (and really need help with)
Could you please help me with this? It takes 15 seconds and is guaranteed harmless. VOTING CLOSES TOMORROW.
The ballot is click link here. Just write in my name, Bonny King-Taylor.
Many thanks!
~ma for Daniel Jensen, please. He went to urgent care today with a sore toe. They sent him to the ER (the whole medical campus is connected, so technically he did not leave the building). By the time I caught up with him,
the area around the toe had turned black. The other toes on that foot were red and swollen, the shin of that leg was bright red swollen and weeping.
This is worse than the infection ten years ago that sent him to Abbot Northwestern for three weeks. Edited to add: They want to admit him, but there are no available beds. So they are keeping him in the ER. At the moment he does not have his phone.
Daniel has been transferred to Abbot Northwest, surgery scheduled for tomorrow morning. His pain is pretty moderate.
My mom is headed to the ER. Long story short, she's 3+ weeks into some bizarre episode that began with extreme emotional outbursts, proceeded to memory loss and inability to perform basic self-care, and now includes fatigue so severe she can hardly move. My brother and dad are with her. I'm glad she's finally going to the hospital but am still extremely worried and would be grateful for any ~ma you can spare. She just turned 74 yesterday.
So, we found out that my mom has Creutzfeld-Jakob disease, which is incurable and invariably fatal within a few months. It all feels very unreal.
Many, many thanks to everyone who helped out with my Best of DC campaign.
I won!
It's a huge help to my business.
Cheers!