The anxiety leading up to the first chemo was pretty tremendous. I was worried about a lot of things. How will it be? Will I get everything with the cold caps worked out? Will I be able to take care of Julianna? And on and on. It is two days later now and things are not so bad.
My friend Cathy came with me to help me with the cold caps. You have to bring someone with you either way since you can't drive home. We got there on time and they brought us back to the infusion room pretty quickly. We had the wheelie max cooler with us. I also had a bag with a pillow and blanket and she had a bag with reading material and her Christmas cards she was hoping to write out. We looked like we were moving in. They gave us a spot in a far corner and we were happy to be a little removed from everyone.
They came and gave me pre-medications first. They gave tylenol, benadryl, emend (anti-nausea), dexamethasone (steroid) and possibly a few more things. Then they started the herceptin. After a little while I started to get a very restless feeling. I am not sure which medication it was from but it is possible that it was the steroid. They gave me some ativan (like valium) and it went away.
When it was about 20 minutes into the 90 minute herceptin infusion Cathy took a cold cap out of the cooler. It was minus 35 degrees C. She had to knead it (wearing gloves) until it got to the proper temperature of minus 31 degrees C. When it did she put it on my head. Holy %^&*!!!!! It felt like getting hit by a bat to feel something so cold on your head. I didn't think I would be able to do it. Twenty minutes later we did it again. Also terribly cold and painful. After the first two we went to the thirty minute schedule. This wasn't as bad. I actually got used to it and was even falling asleep between cap changes.
At about noon they served all the patients and their helpers lunch. Chinese food, pretty yummy. Dr. Citron served it himself. When he got to me he said he didn't like those "hats". I told him that the Penguin Cold Cap company would be at a breast cancer symposium on 12/9 in San Antonio. Texas and they would be giving tons of information about it. He said he would be at that conference. I hope he looks into it. I did a ton of research about them before deciding to do it and I really can't find any down side except that it is pretty labor intensive until you get used to it.
At about 2 pm they finished with the infusions. All together there were infusions for about 5 hours. It will be shorter in the future. We had to go next door to make appointments. When we got to the car we changed the cap again. Then we went to the Roosevelt Field Mall to JC penny's so I could pick up Julianna's Christmas pictures. I had the cap on. People were starting but I really didn't care. I was on a mission. I was making a calendar for my Dad and Betty for Christmas and I needed my December photo!
We continued to change the caps every 30 minutes until 5 pm. At 5 pm it could come off. It felt great to get the cold and the weight off. Each cap weighs about 3 pounds. All in all it really wasn't that bad. Cathy confessed after the whole thing that she was having a lot of anxiety before the chemo because she didn't want to watch them put poison into me. She said the caps helped a lot because we were too busy to really think about it. She had to get it out, take the temperature and then knead it to the right temperature. We were laughing about it a lot of the time. The next day she said her hands hurt from all the cold and manipulation.
The night of the chemo I was tied and a little nauseous. I took all the things they said to take. The next day I had no appetite and didn't couldn't eat anything until about 4 pm when I had soup. When I got Julianna at babysitting my awesome babysitter Christine gave me some macaroni and cheese to feed Julianna when we got home. This was really helpful to me because I just couldn't think of what to feed her or have any energy to make it.
Today I had to go to the chemo place for a neulasta shot. It is supposed to raise my blood counts. It may cause bone pain because the blood cells are made in the marrow. This shot will force the marrow to go into overdrive and that often causes pain. I hope not.
Thanks so much to everyone for all the help and support. Thanks to all my relatives for donating towards the cold caps and to Nancy and Ruby for organizing the effort. I really appreciate it!!!!
I love you all and will update again soon.
Healthline Mentor
6 years ago
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