Unpacking

I'm at the hospital to get the gauze removed from inside of my abscess. It feels much better than it did a couple of days ago.

Abscess

So the sore was actually an abscess, probably caused by an infected hair follicle. They lanced, drained and packed it. They gave me some antibiotics and sent me home.

Pain in the a$$

I'm in the ER. I have a sore on my butt that is very painful and looks like an infection. It's  about the size of half dollar.

 

Face healing

My face is healing nicely.  The bridge of my nose is still tender as are my knees.

Face plant

I had an appointment with my disability lawyer today. As I walked into to the building, I misjudged the step and fell flat on my face. I also skinned my knee. I'm sure I'll have 2 black eyes tomorrow, but at least I didn't break anything.

Hycamtin side effects

After chemo on Tuesday I had some fatigue. It was off & on not all day. I felt ok, then I felt absolutely drained and an hour or so later, I was ok again. Wednesday was the same way except the fatigue was less frequent.

Hycamtin

Started on Hycamtin today. I'll have chemo once a week for three weeks and then a week off  until the end of April. Hopefully this stuff will work.

New chemo

I'll be starting Hycamtin on Tuesday.  It's going to be once a week for three weeks and then a week off. I'll get the detailed schedule on Tuesday. 

PET scan results

I had an appointment with my oncologist this afternoon to discuss the PET scan results. Some areas are better but the main tumor is still growing.

We're going to try Topotecan (Hycamtin®) next. It'll be once a week for 3 weeks and then a week off. One of the side effects is hair loss, so I get to deal with that again.

He may add a second chemo to it after a while. I don't have a schedule yet but I should know it by the end of the week.

More side effects

The skin issues and infections that I had in the beginning of July are back. I've got rashes on my legs and feet, blisters in weird places like the middle of my thighs and sides of my ankles. I have an appointment with my gynecologic oncologist on Tuesday for a follow up. My regular oncologist decided to cancel the 7th chemo because he wants to see the PET scan results first. Also he wants to give me time to heal so I go back to him on 10/22.

Doxil #6

Well I thought that today was my last scheduled chemo. I had my bloodwork done and was talking to my oncologist. He said my labs are stable enough to skip the bloodwork that was scheduled for October 3. He wants me to get a PET scan, heart sonogram, see my gyn onco then have a seventh round of Doxil on Oct 17. I'm still having skin problems on my hands and feet but the yeast and fungal areas have cleared up.

My fun filled weekend

On Friday morning, I called my oncologist to see if he could see me. I had a couple of infections I wanted him to look at. The receptionist said he was busy and she'd call me back. She called me a few hours later and said he couldn't squeeze me in and suggested I go to urgent care. I knew they wouldn't be able to help me, so I went to the ER around 2pm. They gave me a IV of Vancomycin, did some blood work and decided to send me upstairs for observation.

I got a room around 11pm. I got more antibiotics and went to sleep. On Saturday, the gave me more antibiotics and sent a specialist to see me. She had me get a CT scan with contrast to make sure that it wasn't a cyst or abscess. Thankfully it's just an infection. Sunday morning, she did a needle aspiration to drain it. She sent some pus to be cultured. She said it was a 22 gauge needle but it felt much bigger. They also did a nasal swab to test for MRSA. That turned out to be positive. They gave me a ointment to in my nose twice a day. Thankfully they let me do it and the other 3 topicals myself. Monday was Grand Central. Doctors, nurses, techs, social workers and a friend all came to see me. Tuesday I got released.

 I have creams, powders, and pills to deal with. I made sure that my PCP and oncologist got copies of everything. This morning my oncologist said he'll look at all of the results and reports.

So how was your weekend?

Doxil side effects

I thought I had posted this last week but apparently it got lost in cyberspace.

I have some actual side effects now. I'm super sensitive to heat and have developed a heat rash that goes from my armpits to about mid-thigh. My oncologist has me using an over the counter antifungal powder which is helping. He suggested Gold Bond, Lotrimin or Monkey's Butt. I'm using Gold Bond because I already had some. I might have to buy some Monkey's Butt just so I can say I have Monkey's Butt. LOL.

Doxil #2 side effects

I had my second Doxil treatment on on the 5/30. At first I felt great but the past few days I've felt really punky. I'm not sure if it's from the chemo, issues with my ostomy or the constant rain.

My ostomy bags keep leaking and apparently I'm developing a sensitivity to the adhesive in the Hollister bags that I have. I'm going to switch to Nu-Hope after having tried a sample. They stayed on and didn't irritate my skin. After only about a week, it was starting to heal. They actually make a non-adhesive bag system that I hope to switch to. It's held in place by an O-ring and a belt. I spoke to one of their ostomy nurses and she said it would be better if my skin is intact before I try it.

Doxil #1 side effects

It's been a little over a week since my first Doxil treatment and my side effects have been minimal. I had a couple of days where I just felt like sleeping but they were also hot with high pollen counts so I'm not sure what caused the tiredness. My guess would be that it was a combination of all three. I'm definitely more sensitive to temperature than before and more prone to sunburn so I'll have to be extra careful this summer.

If that's as bad as it gets, I'll be thrilled.

Doxil chemo #1

Today was my first dose of Doxil. It only takes about 2 hours vs 5 hours for Carbo/Taxol. So far, I don't have any side effects. We'll see how the next few days are.

2nd round of chemo

I'll be starting the Doxil chemo on May 2. I don't have a full schedule yet but my oncologist said it would be once every 28 days for 6-8 treatments.

More updates

I know I haven't been keeping this updated like I should, but it's a rough couple of months.

My husband passed away on February 26. Please don't ask me to talk about it. It's just too painful right now. I've had to give up our apartment because I couldn't afford it and even if I could've, I couldn't handle being there anymore.

I found that not only did the tumor not shrink on the Carbo/Taxol, it actually grew! My oncologist had some tests done on samples from my tumor. It's what's called platinum resistant. He was thinking about starting me on Doxil, so I had to have an echocardiogram to make sure that my heart is healthy. Thankfully it is. My oncologist and I talked about it and decided that we'd try Doxil next. There were other options, but the side effects were more severe. I'm waiting for my new schedule. All I know is it will be once every 28 days for 6-8 cycles with weekly blood tests.

ER follow up

I went back to the ER per instructions to get my finger rechecked. They said it looks better and to keep soaking it and taking the antibiotics. I was in and out in about a half hour.

Paronychia

That's the medical term for an infection near a fingernail or toenail. I'm suppose to soak it several times a day in hot water and Epsom salt. They also gave me Keflex. I'm so glad to be back home.

Infected hangnail

I had a hangnail that tore and is now infected with a red line going to my wrist. I called my oncologist who told me to call my primary. She told me to come to the ER for IV antibiotics because she wasn't sure oral antibiotics would work because of the chemo. So I'm waiting to be called back.

Last chemo

I know I haven't been posted much, but I get tired of posting about the side effects all the time. Anyway, today was the last chemo. I have labs in 2 weeks & Dr. Ryu the week after that. I'm guessing that he will want more tests. Fun, fun

Kudos to the purse holders

I didn't write this. I found it on a Facebook group called Sisterhood of Ovarian Cancer Survivors. My purse holder is an absolute Godsend.



KUDOS TO THE PURSE HOLDERS!

You know they are there-we see them everywhere in our CANCER WORLD. They are the spouses and partners who sometimes smile back as we pass from waiting rooms to treatment areas. They are our silent soldier sentinels in this uninvited often terrifying life of ovarian cancer treatment.

Like ourselves, they are bewildered and often stunned at immersion into CANCER WORLD. They spend days and hours offering support, drinking lousy cafeteria coffee, watching their own lives also tick by. Some of them find purpose taking notes, making sure appointments are confirmed, doing additional research. They also help us shuffle along to the car, adjust our seats, make sure we are well supplied with alkaline water, etc.

My own purse holder has been snatched from the dreams of bucket list retirement adventures to having his whole world defined by the course of my disease. He too suffers in CANCER WORLD. The retirement adventures he dreamed of have been squelched or at least shelved.

Instead, while purse holding, he has muscled through the 3000 pages of THE LAST LION—fittingly about Churchill’s “never, never, never give up” spirit. He has engaged in numerous open discussions about the end of my life—at least I get to decide on where, right?

For both of us, the gut punches would take a thousand purses to fill. He is right there with me as we talk with our children, friends, relatives—and carries the stress in the noblest of ways.

Like many men, my purse holder is a deep and quiet ponderer as opposed to my constant chatter and processing. The disease’s silent shadow is always there as he stoically carries on.

Purse holders are everywhere. Just yesterday I watched one down on his knees next to his wife’s chemo infusion chair. When I commented “you sure know how to display love”, this large man thanked me as tears ran down his face.

Just think of all the things our purse holders do!? They take notes, change bandages, give injections, keep water bottles filled, try to cook, HOLD HANDS, HUG, and support us as both our hearts break. They also manage visitors, share updates and try to keep their own sanity grounded.

Getting to share joy, sunsets, jokes fill up our purse holders as much as ourselves. We try to focus on the AWESOME WORLD Mother Nature keeps providing: clouds, birds, water - all refill our often numb spirits. Seeking out large vistas also seems to help.

Above all, my purse holder has earned sainthood for his implacable tolerance of my moods. This disease sure can rip my “natural charm” to shreds. Often I fly from joy to deep angst within one minute. “Living for the moment” seems great, though I suspect only dogs truly practice this. Yet, my purse holder shoulders us through it.

Who knew we would be lucky enough to have purse holders willing to journey along with us? These guys deserve so much more than a cold beer and hug. My “kudos” to my own purse holder is for how gently he supports my baffling diseased life. You say?

Genetic testing

I got my genetic testing (including BRCA) done today. It'll be 2-4 weeks for the results.