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Showing posts from July, 2018

Is it Chemo Brain? Or ...

Yesterday was a day where I couldn’t remember anything. Headed off to the shelter in the morning forgetting my cell phone and the cookies I baked for a BARCS fundraiser. So made a second trip to the shelter to deliver the cookies, so no big deal. BUT... I was looking to going to my support group last night. I even talked about it at the shelter. I did some grocery shopping, came home. And I forgot to go. Today I am beating myself up about it. I was so looking forward to it. I love those women, I wanted to hear how they were doing because several have had recurrences and would have had news about treatment. And I forgot to go. Suddenly this morning I had realized I had missed it and I’m hoping writing about it will make me feel less unsettled. There are days when I really wonder where my brain is. Today is one of those days. But more important, at least to me, is I missed an opportunity to be with this great group of women. I have so much to learn from them. In comparison, I feel like a

My First Haircut

While it’s true my hair isn’t even an inch long yet, it had become a bit sticky-outy, making me feel like I looked like a deranged baby chick, so I scheduled an appointment with Tiffany, my hair cutter whom I hadn’t seen in around six months. She didn’t bat an eye and whipped out her clippers and scissors and got to work. A little more than five minutes later, I was evened out, the back was buzzed and I felt oh so much better. The hair on my head is growing fast. Not much has come back elsewhere. I’ve got sparce eyebrows and stubby eyelashes. Someone on one of the OC Facebook pages recommended Thrive Causemetics mascara and it really works. Suddenly I have what look like normal eyelashes again! Pubic hair is slowly coming in, but so far no underarm or arm or leg hair. After my haircut I had a great chat with the store owner at Milagro in Hampden. She is the one who gave me the shawl that I wore for every weekly chemo session and I now wear for my every other week Avelumab maintenan

Identity

I’m a survivor. NED. In remission. Yes, I am all of those things. But what am I, really? I am tired. I’m partially bald. I have pieces of eyebrows and eyelashes. The nerves in my feet are screwed up. I might not have cancer but I’m not better. And I’m looking over my shoulder. It’s only been a few weeks since I finished chemo and I now receive maintenance infusions every other week as part of a clinical trial. So all of this in remission stuff is new. But other than glioblastoma, which always comes back, I’m not sure there is another cancer with such a high rate of recurrence. There very well could be; I’m just not aware of it, and let’s face it, I had ovarian cancer so it’s kind of a focus, you know? My hope is as I get stronger, and I feel I’m getting stronger every day, I won’t be so obsessed. But I still check Facebook groups more than once a day, I still do searches, I still read what I can. It’s not keeping me up at night, and I thank CBD oil for that, but I doubt an hour goes

Victory Tour

This week was Jerry’s birthday, and he didn’t want a party or celebration. So we thought, why not head out of town for a couple of days. It would be a test run to see how I do traveling in hopes of taking longer trips further away in the future. We decided to go to Pittsburgh. It’s not too far away but far enough to make us feel like we were taking a real trip. And I had never been and Jerry had been years ago on business so it would be new for both of us. The first thing I did was get on line and make reservations for Jerry’s birthday. He might be trying to ignore it, but I was determined to celebrate. I had an infusion on Tuesday so we decided Wednesday would be a good day to go, with a return on Friday. I found what looked like a cute B and B for us to stay in, so we were set. We had hoped to do some sightseeing on Wednesday, but other than take a walk in the city, that was about it. We found a very nice restaurant for dinner. Eleven is in what they call the Strip District. It is

Paying it Forward

I got to do something really great that had been done for me. I got to talk to a newly diagnosed ovarian cancer warrior. She has already had surgery and was going that day to her oncologist to talk about staging and chemo. We discussed treatment, side effects, how to get through it all. We talked about medication, constipation, acupuncture and hair loss. We discussed B vitamins and how to deal with ridiculous advice from well-meaning friends and acquaintances. I tried to be as honest as I could be. Yes, recurrence is almost likely, but I have met women who have handled it with grace and optimism. She will be tired and there is no shame in letting others help. I let her know I’m still not strong enough to ride a bicycle but I will get there. I told her while eating healthy is important, no food, except sushi and salad bars, is off limits. I told her to get premium brands of ginger ale. I told her to take advantage of good days and nap when she needs to. We had a great discussion, and sh

De Agony of De Feet

Probably not my first time here complaining about neuropathy in my feet, but yesterday it reached a whole new level of discomfort. I spent the last two days spending a lot of time on my feet. We had friends over for a July 4– our deck is a primo spot for watching fireworks— so Jerry and I spent a lot of the day preparing. I’m happy to say that going up and down flights of stairs is getting easier. I AM getting stronger and I’m so pleased. But much of the day was standing in one place in the kitchen, chopping and prepping. But the evening was great fun and a rousing success. Friends brought lots of goodies and we are having a wonderful time eating leftovers. Thursday is shelter day and several cages needed cleaning, which was, once again, standing in one place. And when I got home I had to finish baking for a BARCS fundraiser. And, you guessed it, more stationary activity. My feet had started to bother me late morning and when I took off my sneakers my right foot felt like it had turne

Good Genes Bad Genes Loose Genes

Because I am 75 percent Ashkenazic Jew, my gynecological oncologist thought it would be prudent for me to have genetic testing, in case I had the BRCA gene, most prevalent in Ashkenazic Jews. While I and my breasts are happy I tested negative, a whole new can of worms was opened when it turns out I have a mutation that can make colon cancer more likely, though Dr. T. assured me I shouldn’t worry much, and that without family history, it wasn’t all that likely. That was driven home when I met with a genetic counselor and an oncologist on Friday. They did suggest I have a colonoscopy every three years instead of 10, and while the prep is not my favorite thing, I won’t mind doing that. Besides meeting with the genetic counselor, this week also included another support group meeting. Two of the women are going through recurrence, one of whom had had a very tricky surgery just five weeks before. Another was seeing her physician the next day to hear about treatment options. The discussion