Once again, it was a really rough week. Let's take it day by day,..things will end up okay--just so you know.
I did message my surgeon about the gelly-like issue from my bladder. She ordered a urine sample.
I messaged Dr. Kobrossy:
I have been totally miserable. Had diarrhea without any warning at the eye doctor's after my first chemo. Luckily made it into a single bathroom I could lock. Was all over the toilet and floor and my worst nightmare.
After the second one last Friday I had terrible stomach cramps and started leaking a burning diarrhea for a few hours. At least I made it home that time. Had hardly eaten anything for days so it was just a watery leaking that felt like acid and burned my butt till it bled.
Last Friday I also had a gelly-like discharge from my bladder for a few hours, too. (I just messaged my surgeon about that.)
I have been constantly nauseous, dizzy, have gut pain, can barely eat or drink, exhausted, falling asleep all the time, ache all over, often feel like I am running a temp but I'm not...generally miserable. The new anti-nausea medication helps to a degree with the throat and acid reflux, anyways.
Is this normal? I am at the point where I am afraid to come back Friday. I'm barely functional. Please advise.
What I got was that I should come and get the bloodwork on Friday and Dr. Kobrossy would meet with me briefly afterwards. Then it would be decided about whether I had my chemo treatment that day.
That feeling like I had to throw up all the time--well, after the second chemo session it came to fruition. I was throwing up regularly. Or should I say mostly dry-heaving because I couldn't keep anything down--even water. I was sleeping at night plus taking 2-3 naps a day of 2-4 hours...if you can call them naps. I just couldn't keep my eyes open and would doze off.
My huge task of the day was to just shower after four days. Had lost 18 lbs since maybe a month ago. I don't keep track.
I had a video call with Dagan and Leah. The very idea of another treatment made me cry. I needed a break. They totally agreed and were behind me if I wanted to refuse treatment on Friday.
Leah made a trip down to Minneapolis to pick up things at IKEA! I was getting a new kitchen table (expandable and only $149.00) and some new towels. She had a nice long visit with her baby sister and her family, too. Quite a trip--like four hours each way. She got home about 1:30am.
Me. I was home sleeping and dry heaving.
Leah came over that night and helped me with a few things. I'd been basically pretty non-funtional since chemo started and it was getting worse. Sometimes could barely keep my eyes open--with company! That is not me. I had managed to force myself to eat something...but barfed it all up. Was getting a bit worried I had been starting to barf up my blood pressure pill...and I was now barfing up the anti-nausea pill.
Decided that I was not having treatment tomorrow. Dagan and Leah TOTALLY agreed and supported me. Leah was coming with me and we were kind of prepared for battle.
Woke up from a dead sleep at 1:45am dry-heaving and now I had a rash from midsection to mid thigh. Was all getting soooo ridiculously awful. Dry-heaving again at noon--probably lost BP pill again. Had lost 21 lbs. Another three pounds in three days.
Leah and I made it to the infusion lab and guess what? This time they couldn't get my port to work at all. Tried for 35 minutes. (Later I thought--was probably too dehydrated!) I told him that I wasn't planning on having treatment, anyways. They brought a guy up from the regular lab to take the blood sample out of my arm. Then we went to wait for Dr. Kobrossy...and were geared up to fight him if he woudn't give me a break from chemo.
But he came in apologizing for how awful I have been feeling and told me no more chemo. I am so spacy that I thought he meant a break from chemo for a couple of weeks or something--and even that made me cry. But--NO MORE CHEMO!!
I had an unusual reaction, he said. (Looked online later--looks like probably an allergic reaction to chemo--down to the weird rash.) He did seem genuinely upset that I was in such misery...even had to come in carrying a small container to puke in everywhere I went. He wants me to heal up and feel better. Then we will do immunotherapy. In a weird way this was like a blessing in disguise. I don't have to go through months of chemo before I qualify for immunotherapy.
Anyways, he wanted me to get a couple of kinds of IV anti-nausea drugs--one faster acting and one longer lasting. So they needed to open up my port. Put some expensive stuff in there that had to sit for 30 minutes and that opened it up so I could do the drips. The rest of the day was the first time I had not been nauseous for two weeks. Was able to eat a little bit--but mostly DRINK WATER!!!
Dr. Kobrossy even came to check on me a couple of times while I was getting the infusions. He even gave us his private home number in case I got worse over the weekend. Told me to go to ER and let him know if I did. He kept saying how bad he felt I had to go through all of this. Nice to have a doctor who shows he cares.
By Saturday I got back the stomach ickies--but not enough to throw up, at least. And I don't tolerate food that well but I can tolerate water and I am drinking water like crazy. Water is life! I can almost feel it bringing me back to life.
I also had more blood drawn that day to see if this was effecting my kidneys or liver or whatever. I can't remember. Leah would know.
I noticed at the clinic that I was also short of breath. I thought it was from wearing a mask and feeling so weak, but I have had that since, too. It's going to take a while for me to get close to back to my old cruddy normal, I think. I am so weak I can't stand up for very long. Still tired and dozing off, light-headed, some nausea...but the rash is getting better.
I go back on Friday for bloodwork and a visit with Dr. Kobrossy--to discuss immunotherapy, I believe. All that's in my brain is no chemo. :)
Okay--you didn't think I would have a blog without pictures, did you? LOL!
When Leah brought me home Friday there was a flower box!! From Karl!!