Getting Through It

So, everyone is asking how its going. I had no internet, but I am back now. The first few days after the chemo were filled with nausea and stomach pain. The anti-nausea medications helped a little. I actually felt like when I was about 9 weeks pregnant. Just yucky and there is not much anyone can do about it. On Wednesday I had to go back to the chemo place to get a shot of neulasta. The neulasta is supposed to raise the blood counts. About a day after the neulasta shot I started having pretty severe bone pain. They said this was likely to happen. It happens because the bone marrow makes the new blood cells. The bone marrow is in overdrive trying to make the cells and the old dead cells are in there too. This creates marrow crowding, and pain. At some points it was excruciating and very difficult to deal with. I still have it, but not to the degree I did Thursday, Friday and Saturday. The other side effect I still have is stomach pain and bowel disturbances.

Julianna has been the best baby. She is actually taking a nap right now. She really has made this easier. Last night she stayed over my friend Vanna's house. It was helpful to me because I could take a sleeping pill without worrying about hearing her if she should wake up. Julianna rarely wakes up in the middle of the night, but I wouldn't take anything just in case.

Thanks for all the support! I really appreciate it.

First Chemo

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.

First Chemo - Pictures

This is Cathy using the thermometer on the cap and then kneading it to get it to the proper temperature. The proper temperature is minus 31 degrees C.

Me sitting with the cap on during the infusion.

They fed us during the chemo. Chinese food. It was yummy.

The infusion. I brought this beautiful blanket. My friend Betty Connor and her quilting club made it for me. I thought it would be perfect to use for warmth during the chemo since it was made with so much love.

Cathy wearing a (not so) cold cap in solidarity.

Chemo Morning

Getting ready. I took all the cold caps out of their protective boxes and put them in Hefty One Zip Jumbo bags. I was able to put two in each bag and placed them with the white sides facing out. I (wearing gloves) put the dry ice in a garbage bag and broke it by dropping it on the sidewalk. I then put dry ice along the bottom of the cooler 2 bags side by side and then more ice. I finished with a layer of dry ice. I got 4 bags in one cooler and 3 in the other. The coolers are 60 quarts each with wheels. I wouldn't want to go much bigger because it will be to hard to move.. I bought 80 bounds of dry ice. I think I can get away with 50 or 60 especially if I buy it the day of treatment.

Cathy is here top watch the video. Will post more later.

First Chemo Tomorrow

I was able to get all the things I need for chemo tomorrow. My friend Vanna watched Julianna for a few hours this morning. In that time I went to Target and got the coolers and bags. I had time left so I decided to drive to Roosevelt to see if the ice place was open. They don't seem to answer their phone but I figured I would try it. I went there and they were open. The guy said they are the only place on LI to sell dry ice retail. They are open 10- 2 on Sunday. I got it and I am very relieved.

I know some people don't get the whole cold cap thing. However, as a big baseball fan I have to say, if you are going to go down at least go down swinging.The woman who used this set of caps before me also did TCH and kept her hair. Also, some people who use Taxotere have PERMANENT hair loss. That is a huge big deal. So, its hard and its a bit pricey (Thanks everyone!) but I am hoping it will be worth it.

After getting all the stuff Julianna, Vanna, Summer and I went to the ambulance bureau kids Christmas party. It was very nice and Julianna had a great time. She ran around at mach speed most of the time. She held her own with the big kids but was a bit scared of Santa. He is a very strange man and I have warned her about that, so it was no surprise. She is a party girl so I guess I am in for it later. I can't imagine where she gets that. LOL. While we were at the party my friend and next door neighbor Lori cleaned my house. She rocks!

Thanks everyone for your support! My friend Cathy is going with me tomorrow. I will post after it is over to let everyone know how it went.

Tough Day

It has been rainy and cold all day. I had to drive around to a bunch of stores to try to find the things I will need for the cold caps. It was tough because I had to drag Julianna along. I was able to find a digital thermometer capable of reading to minus 40 degrees C. I found that at Lowes in the grill section. There are slim pickings in the grill section this time of year. I tried to get the cooler in a bunch of places but no one had it. I was able to track it online in Target but I will have to drive for a bit. The coolers are a seasonal item too, and this is not the season. It has to be a specially insulated type.

Dry ice is tough. I finally found a place in Queens. I can go there tomorrow to get it. I am hoping it will last in the special cooler.

While I was trying to track everything online Julianna was taking a nap. She woke up with a bad diaper and I changed her in the crib so she might go to sleep. She was pretty quiet so I thought all was well. When I went in there I was in for a big surprise. Apparently, I left the powder in the crib when I changed her. She managed to empty the entire container all over herself and her room. Ducks and all. She looked like a marshmallow baby. I called poison control because I remember from working there that it is a big inhalation hazard. They said if she doesn't have any symptoms just bathe her and check to make sure she doesn't have any wheezing or signs of an airway problem. She doesn't. She thought it was great fun. I will check her periodically through the night to make sure all is well. Great fun for her, huge mess for me.

I am hoping I have enough time to get everything tomorrow. I am going to see if someone can watch her so I can zoom along and get everything.

I am still pretty sore from the fill. I hope tomorrow is more productive.

Happy 80th Birthday Dad!!!!!

The Caps Arrived!!!

The Penguin Cold Caps arrived today. I am giving away all my frozen food so I can fit them in my freezer. If anyone wants any, mostly boxed Lean Cuisine and such, just let me know. I waited at home all day because FedEx said they required a signature. At about ten after five I called FedEx to see what was up. She tracked them and said they were on my front porch. I have no idea when they arrived but I guess I wasted my time sitting here. Tomorrow I have to go out and find a digital thermometer capabale of going to -31 C. and two 7 day coolers. I also have to find out about getting dry ice to bring them to the chemo place. You have to use dry ice because the regular freezer can't get them as cold as minus 31 C. That is pretty cold. At first I thought that was a mistake and they meant 31 degrees C. But it is not. It is minus 31. Very cold. They are not kidding when they say it should make your hair follicles hypothermic. The whole thing is a bit labor intensive but if it works it will be worth it.

I went to the plastic surgeon yesterday. He added 50cc of saline to the tissue expander. It is pretty uncomfortable today. He also told me of a new procedure he is looking into. In that procedure they liposuction fat out of areas of your body (I have a lot of potential donor sites) and inject it into the breast. This would not normally work because it would not be vasculated and would dissapate over time. There is a new system where they put a negative pressure device (like a suction) over the breast. That negative pressure would cause the vessels to form and vasculate the added fat. There is a surgeon in Florida that has been doing breast reconstruction with this system and having success. Dr. Keller asked me if I might be interested in exploring this option in the future. I told him I might but obviously I can't have any type of surgery until chemo is over for awhile. He said it would take time to investigate this procedure anyway. I told him I would certainly be interested in finding out more.

I have a lot of things to get ready before Monday's chemo. Thanks to everyone for the overwhelming support. Happy Birthday to my nephew Owen!!!!!!!!