Cabernet and Carboplatin

The hair continues to grow. It is at a fuzzy stage and I have decided hats be damned! It’s summer and too hot to wear a hat, so I have been going out with my baby chick hairdo and feel fine about it. Still waiting for eyelashes. Had my second maintenance infusion yesterday and it went fine. The Benadryl did hit me pretty hard so took a two hour nap im the afternoon. I saw my oncologist before the treatment and he reminded me that it will take a while— up to a year— before I feel normal. I asked him about physical therapy and he thought that would be a good idea. So now I have my first appointment in around four weeks with a physical therapist who specializes in cancer patients. My hope is she can help me get my strength and balance back. Having finished treatment but not really being “myself” makes me feel as if I am living in a kind of no-man’s land. I am in remission, but I am not”better.” Though I can feel myself getting stronger, there are so many things I’m just not ready to do....

Started maintenance infusion of avelumab last week. It is an immunotherapy drug that has been approved for some lung and skin cancers and is now being tried for ovarian cancer. The list of side effects was daunting, but I’m happy to say I’m not having any. I did have this drug while I was on chemo, but there was no way to distinguish which drug was causing the side effects. Relieved it was not the avelumab. I will get an infusion of avelumab every other week for two years. In reality, I’m not optimistic the avelumab will help, but I think being in a clinical trial has its own set of benefits. I am closely monitored, and I continue to have practically round the clock access to my clinical trial nurse, Amy. I think it is worth the few hours every other week. In other post chemo news, my hair has started to grow back. I have everything from stubble to about an inch of growth on my head. Still no eyelashes or eyebrows, but the chin hair is back. Can I trade it for eyelashes, please? I n...

Especially when that Acronym is NED! NO EVIDENCE OF DISEASE!!! Got the good news. The scan was clear and my CA-125 is still holding at 9. I’m here at Hopkins getting my infusion of Avelumab and basking in the glory of being cancer free. As usual, we will go out for dinner with our neighbors tonight. It will be a celebration. Other good news is my doctor has told me it is okay for me to go back to cleaning cages at the BARCS Community Cats Program. I’ve missed the kitties and I have so missed Grace, who runs the program. I’m thinking maybe I can even go in tomorrow! And Jerry and I will start making plans to travel. Amy, my clinical trial nurse goddess, told me I will see myself getting stronger every day. I don’t know if I can express what a turning point this is. No chemo. No cancer. I know things can change and none of us can predict what lies down the road, but for now, I am joyous and will make plans for a whole host of wonderful tomorrows.

My insides are channeling Martha Graham. Everything is dancing. But not in a good way. I get my after chemo scan today and while I’m pretty sure I will have good results— my midpoint scan was fine— I’m still nervous. I head out soon to go drink a giant cup of something that makes me want to puke so they can see if anything suspicious is growing inside me. And my mind is already going to the NEXT scan, when I will be further removed from chemo which will give the bad stuff more time to grow. It is truly a never ending cycle. Recurrence rates are so high with ovarian cancer that it is hard not to think down the road. But I try. And I don’t want to just live in the now because I want to plan for the future, which involves travel and fun. I feel myself getting a little stronger every day. I’m making it up the steps a little more easily and the hills in my neighborhood are not quite as daunting. All great progress. And speaking of progress and pins and needles. The neuropathy in my feet s...

So chemo is over. I’m getting lots of congratulations and cheers. So why am I not cheering? Because I’m afraid. I have a week until my CT scan, and until then, my mind is everywhere. Am I gaining weight because I’m eating too much or is something growing in there? Yesterday was a particularly bad day. I was feeling weak and altogether not great, and I was sedentary, which of course put my thinking, and ruminating, into overtime. The dread was magnified. The exhaustion was overwhelming. I vowed that today would be better, but so far, I’m feeling much the same so I thought writing it out might help. It frequently does. So here is what I know— my last scan midway through chemo was clear. My last CA-125 a few weeks ago was 9. And let’s face it, whatever is going on inside me is out of my control. My rational being tells me all is well. And that other little gnawing voice questioning that, well, it’s part of who I am as well, but I have met some pretty great women who have weathered recu...