obsessing about food

Maybe I'm just that bored and maybe I'm just that hungry, especially on steroids, but I do think about food a lot. Normally, I don't pay attention to ads for food, or people eating on television but suddenly, it looks good, and gets me thinking about food, like a beer commercial used to make me think about drinking (in early sobriety). I am watching what I'm eating, trying to eat as healthy as always, if not better, some days I'm lucky to eat a bagel if that's what I can get down. But I'm definitely planning food on days I can eat, because it is what I'm thinking about, not going to court, perhaps because it's one of the few things I can do.

Surrounding myself with people who care

While I am always grateful to have my husband and son around me as well as good friends, a strong conclusion any person going through cancer treatment would reach is only surround themselves only with people who truly care about them. Sometimes it means releasing friends and family who appear to be well meaning but when you scratch the surface, it is really about drama and tumult, and no cancer patient can handle it, especially not me. Only peace and serenity in my world. No negative energy. Some days it is hard enough to eat, to get out of bed, to get one thing crossed off my to do list. Some days nothing gets done. I sleep, watch tv,surf the net, can't focus enough to read a book, and am lucky if I can write anything.

Thanks to NJMVC for handicapped placard

I had the forms since I came home from the hospital. My doctor had signed them. Could have sent them in to MVC but couldn't really focus on it. Kept thinking D. and I would go there one day and just take care of it. Took me more than two months to finally get there early one day last week. The staff was pleasant and helpful and I was only waiting about 10 minutes until they opened the window. Maybe I waited because it is another admission that I am truly sick and can't be working, shouldn't be working. Some days I definitely should not be driving due to fatigue and lack of focus, mental clarity is just not there. So, when I left motor vehicle, I stopped at the post office on my way home. Naturally, there was only one handicapped spot available and as I was pulling in the driveway, a woman a few years older than me pulled into the spot and got out of her car. No handicapped placard or plates. I have to stay that over the more than 35 years I've been driving, since the inception of handicapped spots, I have never, ever parked in one, unless I was with my father when he was ill, or my husband who has a placard for his medical condition. But here I was, my first day with the placard, my first attempt to park in the handicapped spot. So, naturally, I rolled down my window and politely pointed out to the woman that she was parked in a handicapped spot. She just shrugged her shoulders and said she was only mailing a letter. I stated, again politely, that I was handicapped, and she did actually move her car. Unfortunately, I'm sure that is not the first or last time she's done this, but hopefully at some point a cop will see her do it, and ticket her. I am truly grateful to have the placard so I can park close to store and building entrances because I am just too fatigued to be walking long distances. Don't have it in me some days.

Week 5 over and with hair - but where's the fun?

Yes, I still have hair. Some fatigue today and definitely achy puffy feet, with some puffiness in my hands. Six weeks in to treatment, week 5 of chemo drugs. Definitely not fun but tolerable. As I think every day I sit in the chair, are we having fun yet??? Do I ever get to have fun again, to truly laugh again? I am so good at living one day at a time and I know I will get through this. I see others so much sicker than me when I am at the hospital. Maybe when I get to the end of the treatment, I will look exhausted and depleted like them. I don't know. I just try to get up every morning and get dressed, (not in sweat pants) put on some makeup and a scarf (as that is my signature), and make the best of the day. But I am too tired to go to New York or travel to anywhere, and not enough time between treatments, getting my son ready for his senior year of high school. I always feel it is an accomplishment when I make it through another winter, into the spring. This year I can't wait for December, and knowing that in the spring I will feel better, get my health back and move on to some fun and a return to life.

cancer statistics

Hard to believe the statistics in this country and how we had a "war" on cancer how many years ago - the 70s - and we were going to cure cancer. While treatments have clearly gotten better and survival rates, we so need more research funding and action by our do-nothing congress. So for the statistics, ovarian cancer is the 8th on the list for cancer in women but 5th for mortality. Probably because it is usually diagnosed in stage 3 or 4. More than 12 million people have cancer in this country or have survived it. More than 1,600,000 are diagnosed with cancer each year and more than 500,000 die each year from cancer. In contrast, only 1.2 million people in US have AIDS or are HIV positive, and only 9500 people died from HIV last year.

Cycle 2 - week 1

So tuesday was that special day in my month of carboplatinum and taxol combo, definitely the worst week. I don't know if it is better or worse coming off a week of no treatment when I'm feeling good, with energy, almost normal, and to take such toxic meds. Definitely did not feel good yesterday, battling nausea and horrible fatigue, lack of focus etc. but got through it. Today is a little better at least for now. Still have my hair. CA125 down to 37. Learned more about what it all means. As my doc explained to me, at some point that level will plateau and that will be my norm, since they don't have a baseline of what is normal for me. Could be 35 could be O. At least my numbers are trending down. This is still being studied. Learning more than I ever wanted to know about any of this.

Cold caps to save hair from chemo

Happened to see an article today about using cold to save hair during chemo. Naturally, something else that has been used in Europe for about 15 years that we don't have, or hasn't been approved by the FDA, but people are using it. Penguin cold caps are available but cost about $1500 for six months of treatment and we would need a special freezer etc. So, given who my husband is and after 12 years together, we're going to figure out our own methodology for this. I've been doing the things they recommend in terms of using a very pure shampoo, not combing my hair (because it's so short), not using hair dryer etc. (it is summer and it's short), and after three treatments I do still have my hair. Who knows, maybe I can get through this with some hair.

3 down 15 to go - Feeling ok so far.

Tuesday was my third treatment, the last of the first of six cycles, and I am amazed that I am not vomiting, not stuck in bed, etc. I will say the worst part if the disrupted sleep from the steroids, the constipation, and making sure I don't let my stomach get on empty because then I will get nausea. But knowing now that I have almost two weeks of no treatment is a gift, to get things done, to clean out my digestive system and get a little more normal, to get a little more organized, and see a few people for lunches and coffees, things I don't do when I'm working. The next round with both the carboplatinum and taxol is the worst week of the cycle, so we'll see how I feel, as the last one wasn't too bad, but I was exhausted. Maybe it was related more to still recuperating from the original surgery and then the surgery for the port, but we shall see.

So I am waiting for my hair to fall out

From what I have been told and what I read my hair is supposed to be gone by now, or at least thinning. The consensus seems to be 2-3 weeks from first treatment, or 15-16 days, with most people waking up in the am with hair all over their pillow and in the bed. So each night I go to sleep running my fingers through my short hair wondering what the morning will bring, but shocked when I get up and its still there. Maybe even needing another haircut soon as I had it done last five weeks ago. I have the wig ready, and when I go for treatment the nurses are amazed I still have hair on my head. Does it mean the dosage isn't high enough and isn't killing enough cells, healthy and cancer cells? Does it mean cutting my hair off early gave it a little more strength and made it more resilient? Probably will never know the answers to these deep questions, but I am grateful every day I have hair.