psyche29: A brown eye with rainbow eyeliner all around it (Default)
Had the day off work today, but as per usual, it was due to some doctor appointments.

1. Had my first 3-month follow-up exam today. All is well, she has no concerns at this time. This is definitely a good thing, but I loathe exams. It's not just a pelvic, she also shoves a finger up your ass to feel the underside of the vaginal cuff. That said, it wasn't as bad as I was fearing it would be. And bonus: I did NOT get stuck like I was expecting.

2. My genetic testing results are in. Everything came back COMPLETELY NORMAL, except for one thing. One gene came back as "variation of unknown significance." Typically, if this gene comes back as a "truly harmful mutation," I would be at higher risk for developing colon polyps, which is widely believed to be a contributing factor to colon cancer. As it is right now, the standard of care for an unknown variance in the gene is to ignore, but keep in the back of the mind. That's the genetic counselor's job, though, not mine, thankfully. For now, no further testing is needed, I am directed to just continue treatment and surveillance as ordered by the gyn/onc.

3. The only thing any of my sisters need to do is to let their lady-bits doctors know that they have a blood sister who had uterine/endometrial cancer. My having it does not at all mean they'll get it, but it raises their chance of getting it a couple percentage points from the norm. They don't need to go out and get hysterectomies or stop producing crotchfruits, but it's something they should all be aware of, and so they'll each be telling their docs.

4. We've been watching Picard. I love it so far. I am intrigued and excited and horrified, all in one go. Heartbroken at the revelation in the beginning of the most recent episode, dying to know more about the end of it.

5. It's taken forever, but we've been watching Rhett & Link on Good Mythical Morning for the last year or so, and are finally only a couple months behind. We're getting there!

6. We got our tax refund, and then did possibly the most adult thing we have ever done in our entire lives: we bought a brand new sofa and loveseat. They were delivered yesterday, and we love them. Like, a lot. First time we've ever had living room furniture that wasn’t previously loved elsewhere, or straight-up free.

I should not be this exhausted, but-. I'm blaming the mild cold I've caught, and think I might go to bed early. ♡
psyche29: A brown eye with rainbow eyeliner all around it (Default)
Seriously, though!

I have left y'all hanging since end of May - sorry. Life was hectic and ridiculous for all of 2019.

I left off at "just started radiation, three down, 25 to go" and "holy shit, Compazine isn't working, I sure hope Zofran does." Zofran worked - barely. I had to take it on the dot, one every eight hours, over the entire course of radiation. When I missed it, I was puking.

I was out of work all of May and June, and halfway through July per the infectious disease doc's orders. I had the antibiotic via PICC line through June 14th, and the PICC line removed June 15th. I had another TEE before July for the cardiologist, and was cleared by her July 1st to restart chemo in August. The infectious disease doc cleared me to restart work on July 16th.

Then near the end of July, I got shingles. It surprised exactly ZERO doctors, because shingles is an opportunistic bitch who saw my lack of immune system and said "PARTY IN THIS ONE!!" Luckily, it was just a small patch on my lower left back, right at the waistline, and caught early enough to take the med course.

In August, I was able to take a weekend away before restarting the treatment. It did not last nearly long enough, obviously. I got a new PICC line August 6th, plus a CT scan which came back all clear. August 8th was chemo #3, and August 28th was chemo #4.

Chemo #5 was set for September 16th, but my platelets were too low (they need to be 100 to get chemo, and mine were at 85). My hemoglobin also was at 7.9, so instead of chemo, I got one unit of blood transfused. The following week, everything was high enough (barely) to have chemo #5. The doctor the week before reassured us that having to push them out was something that happens to a LOT of people, so I was not at all an aberration. It basically just meant my body was saying "No, dude, I need more time."

Chemo #6 was set for October 15th, but that one had to be pushed back a week, too; my platelets were only at 80. And, since my hemoglobin was down to 7.3, I got 2 units of blood transfused. Chemo # 6 was on October 22nd, and that completed the cycles.

I kept the PICC line for another month in case the oncologist wanted more scans or blood draws. I made use of that thing - contacted my primary, who I hadn't seen since January, and asked what she wanted besides a new A1C. She ordered the A1C and a complete cholesterol panel, since I'd never had one, and we got that drawn. Excellent news - cholesterol came back completely normal. And my A1C? In January, it was 10. In November, it was down to 6.1. That's HUGE. I contribute it entirely to lack of eating and a bunch of weight loss.

I saw the oncologist November 22nd, and got the all-clear. I am NED (no evidence of disease). And now, follow-up will include exams every three months for the next two years, then every six months for three years after that, then yearly following that if everything comes back clear every time. She also said, "And since you're over 40, you should have a mammogram." I said, "What did you call me?" She laughed and said, "You need a mammogram." Then she went to take out the PICC line, and it GOT STUCK. They ended up sending me to the hospital for imaging, because if it broke off, they'd have to put me in surgery to remove it. The hospital got it out though.

December, I saw the eye doctor because I'd been having vision issues - steroids can fuck up your eyes big time, and I was referred to a retinal specialist and also given a prescription for bifocals. I also saw my primary doctor that day, who was so pleased with the weight loss and the lower A1C that she gave me permission to only test my blood sugar twice a week instead of every day.

And now we're in 2020. Last week on the 23rd, I had three appointments. I saw the retinal specialist first. I have diabetic retinopathy and diabetic macular edema exacerbated by anemia and thrombocytopenia caused by chemo. However, I have 20/20 vision with my glasses and my blood sugars are under control, so he's just going to watch it. I need to see him every 3-4 months to monitor. I do not want needles in my fucking eye, so I guess I watch my diet some more. Sigh.

Then I saw the genetic counselor. I was referred there because while no one in either side of the family has had endometrial or ovarian cancer, there is lots of pancreatic, bladder, colon, and prostate cancer, and all of them are related. I took my dad and my aunt with me to give both sides of the family history, and now am having something like 34 genes tested for anomolies. It's a valid precaution given the family history, and is literally to help map me out and determine if I'm more at risk for other cancers, and if so, to recommend appropriate screenings early. So I spent 25 minutes working up enough spit to fill the tube (no pokes! woohoo!), and it's off to a lab for testing now.

And finally, I had that mammogram. Called the insurance several weeks ago to make sure 3D was covered and if I needed anything, and they said just ask for it, you're good. Asked for it, got it. And y'all, big boobs win the day - nothing about the mammogram hurt AT. ALL. Four images, one each for the front, one each for the side. And the results came back next day as normal, so my boobs are fine.

I am so doctored out, but this is my life now. And while I'm glad I don't currently have cancer, I'm still so irritated any of it happened at all. I've got people godding at me left and right - give it all to "god," "god" will get you through this, blah, blah, blah. My faith is tenuous - AT BEST - and I am not looking for saving, though I don't get mad or upset when people say they pray for me. I don't believe it does one jack of good, but if it helps them feel better, who am I to keep them from following their own beliefs? I just want them to lay off trying to shove me into following them, too.

Lingering side effects include neuropathy in my hands and feet. They are both always cold. Always. They hurt unless they're wrapped in a heated blanket. I work with numb fingers every day because nothing helps. We're not allowed to have space heaters at our desks - but I found a foot rest that has radiant heating in it, so they have no idea I can at least keep my feet warm.

I lost so much weight last year. So much. I'm down ten pants sizes and two shirt sizes. I'm hovering now because I've finally started to get an appetite back, but am watching it more closely because frigging diabetes.

Once surgery was done, I entered surgical menopause. I have very little issue with it, mostly just a hot flash here and there, and super minor from the sounds of it. Maybe one every other day or so, and just a few minutes of needing to fan myself, and then I'm fine. Small favors, right? ;)

My fatigue has tapered off quite a bit. I still need a nap here and there, but nothing like it used to be. And I can finally start helping carry stuff up the stairs - I just need one hand free for the railing, as I still need the support. Mornings and stairs are hard sometimes too, but only because I'm still adjusting to moving after being in bed all night. I only stumble while walking if it's been a very long day and I'm tired, and my balance is almost all back.

My hair is finally starting to grow back, I have lashes and brows again. And nose hair! You never think about it until you don't have it. And thank every deity you want, my hair is coming in stick-straight again. I didn't care what color it came back, as long as it wasn't curly. And it's not at all curly at this point. Huge win. Still have not used shampoo or anything on it, I kind of want to see how it goes. My baby sister, the hair guru, said for dry scalp to use baking soda, then rinse with one part apple cider vinegar, three parts water. Tried that last night, we'll see how it works.

Tentatively, I'll say that things are definitely looking up. *thumbs up*

Separately, life has been wild. My sister who had the baby last year attempted to kill herself in August. She was put in inpatient rehab, which she just graduated from on Saturday, and is now in an independent living place for a while because she's not allowed back home yet. The kids were taken into protective care for a month until their dad managed to get them back, so all of their lives are upside down, but at least they're back together except for Val. And she's at least putting in effort this time. It scares her that she knew what she was doing, but not what triggered it. I'm hoping that's enough to keep her working at it.

Parents turn 65 this year. Mom is on Saturday, and her Medicare kicked in January 1st, so she's been pleased that she can go to the doctor now without worrying about insurance. Dad only has to worry about his until July, when he will turn 65. He's been in the ER a couple times the last three months for chest pain, but thankfully no further heart attacks - both were muscle-strain related.

Got a new-to-us car in early July, as the Geezermobile finally straight-up died. We got a 2016 Ford Fusion Energi, a plug-in hybrid. We love it so far, especially the gas savings.

And Honorary Baby Sister had her baby end of July. He's healthy and beautiful and has a normal name, thank all the stars - Peter Andrew.

This got long, I'm so sorry. I hope you are all doing well!!
psyche29: A brown eye with rainbow eyeliner all around it (Default)
Oh man, do I owe y'all an update.

Shit, I don't even know what my last post was. *goes to check*

Holy shit. I am so behind. So good news: no cancer in the chest.

Other than that, WHAT A FUCKING NIGHTMARE.

After that chest CT, I had my second chemo session (18 April). It went fine, same side effects as before except this time, I never felt better. I was back in the infusion center a week later (25 April) having lost 15 pounds due to severe dehydration. They pumped a litre of fluids into me, then sent me to the ER for another CT because my pulse was hovering around 140, though the labs all looked good.

CT showed nothing but possible inflammation, and they pumped another litre of fluids into me and sent me home.

Almost a week later (30 April), I was sent to the ER because I still felt like shit and wasn't really eating anything, couldn't stay awake. Turns out my port got a staph infection, which spread through my blood and into both my lungs and my heart. I spent a motherfucking week in the hospital, poked all day and night. They removed the port, did a TEE procedure (basically it's a camera shoved down the esophagus to get better pics of the heart - don't worry, I was sedated), and put me on this fairly powerful antibiotic called Nafcillin. It's hell on the peripheral veins - I ended up with four different IVs over the course of a week, and every one of the veins blew to some degree.

I am now on the same drug 24/7, IV via PICC line in my left arm. They said I have to be on it for 57 days, which is nearly two months. I'm almost a month down. I have a home health nurse in every Thursday to draw labs (off the PICC, thank deities), and the numbers are all finally starting to go in the right direction. Also, I was retaining a bunch of water, so my weight spiked back up, but as of today is back where it was before the second chemo session. My feet are still a bit swollen, the left more than the right, but they're going down.

I can't have chemo again until I'm off the antibiotic, and my oncologist wasn't comfortable with no intervention for that long, so I started radiation treatments this Tuesday. Once a day, M-F, for five weeks. Side effects have been effing killing me; the worst has been nausea/vomiting. I was queasy after the first treatment. Yesterday was number two, and immediately after I left the room, I went to the bathroom off the waiting room to #2 my guts out and ended up throwing up into the garbage by the toilet at the same time. I was queasy the rest of the day and night, even though I was taking the Compazine as prescribed. It just wasn't touching it.

This morning, we got into the car to go to session number three, and the minute I got in, I had to open the door back up and vomit on the ground. Saw the doc today as a touch base and told her I was having serious issues and the Compazine wasn't working. She made sure there was nothing else causing it, then prescribed me Zofran. We already picked it up and I took one, so we'll see if it does the trick.

The plan from here is to complete the radiation treatments (25 to go), get off the antibiotic, do another TEE to make sure the infection isn't still clinging to my heart, probably another CT to determine the same for my lungs, and then finish the last 4 cycles of chemo. With any semblance of luck, I should be done before October hits.

As part of all this, I haven't been given the OK to go back to work, so I've opened a short-term disability claim through work. I also filled out the PTO donation form, but have apparently only received about three hours of donations. Nice coworkers. *rolls eyes* Hopefully, the short-term claim will be approved, and we'll at least be in a better position to pay the damn bills.

Seriously, body. WTF is your PROBLEM?

In other news:

1. Baby sister is now married, and happy.

2. Middle sister had her fifth baby, a boy. They named him Nova Kai. As per tradition, I hate it. But at least he's cute.

3. Honorary baby sister (Baby sister's BFF) just had a possible-labor-at-seven-months scare, but she's okay. STAY IN THERE AND BAKE, LITTLE BUN! She's considered high risk, so they're taking ALLLLLL the precautions.

4. My parents come home tonight; they've been in CA with Middle sister and her family for the last month. They are THRILLED to be coming home, and we are equally thrilled to be getting them back!

5. Who can recommend flavorful drink things that don't have sugar or Aspartame in them? I need to watch it with full-sugar things due to diabetes, and most of the diet drinks contain Aspartame, which worsens diarrhea. And motherFUCKER, I hate water plain. I was using the pitcher packs you can get like Crystal Light (the Great Value brand, obv, we are not rich and some of the flavors are better), but it's got the sweetener in it and I am already suffering. Any ideas? PowerAde gets expensive, and obv diet soda also uses Aspartame. It's like my body is grinning while flicking me off and telling me to go perform impossible anatomical acts on myself. THIS IS WHY I CAN'T HAVE NICE THINGS! *thin scream of frustration*

Sorry - I know that got long. I hope y'all are having a better spring!!

Check In.

Apr. 14th, 2019 02:35 pm
psyche29: A brown eye with rainbow eyeliner all around it (Default)
Checking in.

Doing okay. No nausea since that first week, and the pain has dulled in my feet. It's still there, but not keeping me from doing things.

The last four or five days, though, I've really been losing my hair. I have to stop and clear out the brush after every single pass, and today has been the worst so far; it came out in wads this morning. There's enough to still cover my head, but barely. I'll need the hat within a few days, here.

My bathroom garbage looks like I tore apart a wig in it.

Making dinner today; hubby turned 40 on Friday, and requested meatloaf. Got my mom to bake the cake this morning, so I'll do up dinner in a couple hours.

Coming up this week:

1. Chest CT scan with contrast on Wednesday: apparently it's a common test with diagnoses like mine, to make sure there's no stray cancer frolicking about in my chest. Not afraid of the test, but we're hoping there's no evidence of little cancer demons prancing around in there, the fuckers.

2. Chemo Day #2 on Thursday: A friend is coming that day to spend time with me during infusion, so that will be nice.

3. Baby sister gets married in Vegas on Saturday. Mom and Dad are leaving very early Thursday morning to fly out there, and on Sunday they'll head out to California to spend 6 weeks with middle sister and her family.

Hope everyone's had a good weekend!
psyche29: A brown eye with rainbow eyeliner all around it (Default)
A few days out from chemo now.

This is what the port looks like. It's maybe a little bigger than a Rolo chocolate, and inserted under the skin. In my case (and possibly most cases), it's in the upper right chest, with a tube snaking into my central jugular vein. Local anesthesia, conscious sedation.

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This is about two days after insertion. No light makes that bruise look better; it took a while, they really had to struggle to get it in place. It causes me anxiety most days because for being overweight, the port had to go in one of the few places I really haven't got any fat to spare. I can feel it at all times. The two red bits on the right of this pic aren't even part of the incisions, they are literally the skin ripping from the awful tape they used to dress the incisions with gauze. It is horrid.

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This next pic was last Friday - and I keep reminding people it was my birthday, because seriously, how effing SUCKY - while getting the chemo. I look upset or miserable, but really, I had just woken back up. They got the port accessed, drew the labs, got me set up in a bay, and started the saline, and the first three things they gave me were boosters/pre-meds. And the first of those was Benadryl, which alone knocks me the fuck out. Delivered intravenously? I was gone in five minutes and slept through the next two pre-meds (Aloxi - a steroid, and Zantac). It was a total of about 45 minutes for those three, then the two chemo drugs. The first was paclitaxil, which took three hours, and the second was carboplatin, which took 45 minutes. We were pretty surprised, everything went super smoothly and we were out of there by 1:45 PM. And I felt well enough to go get Dairy Queen after.

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The day after (Saturday), I actually felt just fine. No side effects, ran errands with my husband, everything was fine.

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Since then, not so much. I threw up breakfast Sunday morning and have been intermittently queasy since. I've been making use of the lesser of the anti-nausea meds since then (compazine), but shying away from breaking into the lorazepam; it's meant more to help anxiety and sleeping if you're having issues.

But worst of all is the joint pain. It is INSANE. I can't even describe how much I hurt. It's mostly run through the rest of my body, but is really deeply localized now in my feet with pockets of remaining pain in my knees and shins/calves. Husband has tried rubbing them, but it only makes it hurt more. Acetaminophen - I'm not allowed ibuprofen - doesn't even touch it. Elevating them only mildly helps - I still end up spending a good deal of time nearly crying. If this is neuropathy, I am OVER. IT. It's really difficult and painful to even walk.

Otherwise, I am doing okay. Appetite's a little iffy, but I can eat.

As usual, feel free to ask questions!

PS. A few people have messaged me to ask for the Amazon wishlist. It's HERE, but this is not a hint or a plea in any way, shape, or form. I just think some of it's funny (those SOCKS, LOL), and I learned some things, too. Apparently, peach is the color assigned to uterine/endometrial cancer. Anyway, enjoy. ;)

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psyche29: A brown eye with rainbow eyeliner all around it (Default)
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