Where do I begin this update . . . first, I am out of the hospital (for the second time). The only thing they could find with my abdominal pain was "duodenitis" or inflamed duodenum. They don't know why I have it, what caused it, or what to do to make it go away. I just have to watch what I eat and take pain meds when it flares up. Okay. So they sent me home with a regimen of pain meds that seems to be working. This was on a Monday.
The next day, I had an appointment with a retina specialist to check out the spot behind my retina that my eye dr. had seen during my regular eye exam. It was suspicious and could possibly be cancer metastasized. Well, guess what, after a few procedures to get a really good look, it turns out to be exactly that - cancer spread. On the positive side, it looked to be an old spot that is not longer active, a dead spot. Apparently, it had been there for a while and the chemo already took care of it. And it wasn't affecting my vision. Okay, no need to worry about this, just keep an eye on it (excuse the pun). I asked Dr. S if the PET and CT scans check my eyes and he said no, they only go up to the base of my skull. So from now on, I will get full head scans, too.
Then on Wednesday, I noticed my port feeling very sensitive. They had used it for all my iv's while I was in the hospital. I looked and it was kinda red. Infection, right? By Thursday, it was more sore and more red. I decided to go back to the hospital to the infusion suite and let my chemo nurses take a look at it. John almost parked in the 15-minute space thinking they would take a look, confirm the infection, and send us on our way with a script for antibiotics. Well, here's what happened. The infusion nurses did suspect an infection. They called Dr. S who said I should go to the ER. When I got to the ER, they took massive tubes of blood samples to be tested and cultured and said I needed to be admitted. Nooooo, I had just gotten home!!!
They started me on IV antibiotics and waited for the blood samples to show what the infection was, could be staph or strep or MRSA. Great. Dr. S also wanted to have the port removed to eliminate any chance of re-infection. The port removal was supposed to be easy and painless. Let me say, it was not! I was awake and alert the entire time. And the area was already sore, so the little shots of anesthesia and the unattaching of the port itself were torture!! I had my worst episode of pain yet following the port removal. It was so bad I hyperventilated and almost passed out. Thank goodness for Dilaudid and John. My heroes!
Saturday, the dr came in and gave us the best news yet. The infection was staph, but it was the mildest strain. Years ago, they wouldn't even treat it with antibiotics, just let the immunes system take care of it. But since my immune system was compromised from the chemo, he prescribed an oral antibiotic that I could take at home. Home!!! But, my blood counts were low (I had already received a unit of platelets while I was there) they were hesitant to send me home. Well, after another test of my levels, they saw that they had started coming up, so Sat. night I got to go home!!!
BUT . . . as soon as I got home, I got a call from Mom that she was going to the ER. Remember, she had her car wreck the week before. They didn't find anything wrong at that time, but she was having severe pain on her right side now. Turns out the bones in her ribs where the cancer had spread were now broken. It must've happened sometime after she came home from the first visit. They gave her some different pain meds and told her to take it very, very easy until the bones healed.
Can you believe all this?!?!?!
We're all handling everything as well as we can, but it has been really hard!! I'm going to try and set up a Care Calendar for mom, like I have my meal calendar. She's not able to drive and at the moment not even able to move around much. She needs help. John has pretty much taken a leave from work and has been home with me this whole time. I am sooooo lucky to have his help! But I know he's got to be exhausted. The girls have been really good for him, bless their hearts.
So there you go. Things are pretty rough right now. I still can't eat hardly at all and keep losing weight. I still have bouts of nausea and vomiting that don't help. But my hair seems to have stopped falling out and I think I noticed some eyelashes growing in. Yay!
I am still on my chemo schedule getting Doxil every 28 days. The only thing is now I will have to get it through a regular IV since my port is gone. Once every 28 days shouldn't be so bad to find a good vein. I go for my 3rd infusion on Nov. 7 After my 4th infusion, Dr. S wants to evaluate how things are going and decide if it's worthwhile to keep on with the Doxil or if we should switch to something else. I have not heard what my CA125 is lately. That will be a big determining factor.
Okay, that's all for now, that's enough anyway!!!