Thursday, December 31, 2009

Tough Day

Today has been a tough day. It started out ok but the chemo side effects have gotten progressively worse. I have swelling in my hands, feet and face. My joints are all very sore. I have a strong metal taste in my mouth along with mouth sores. I am having trouble with sensation in my hands. I still have some GI upset. All in all a bit of a bummer.

I had to go to the plastic surgeon for an expander fill today. It is uncomfortable but pales in comparison to everything else. I had to give myself the neupagen shot. I was nervous to do it because I had joint pain before the shot. I am hoping the shot doesn't make it too much worse.

My friends have Julianna. I am thrilled to have the help but also sad that I won't be with her as the new year arrives. She is the best baby ever.

I am lucky to have such supportive friends, family and my dog. My dog Smudge comes and sits in the bathroom with me while I am in there for hours with the bucket on my lap. He rests his head on my feet. I wouldn't want a person in there but he is a welcome guest.

I know I have a few more days of this and it will start turning around. I am trying to drink tons of fluid and move through it.

Happy New Year to everyone! I hope it is a happy and healthy year for all!!!!!!

Wednesday, December 30, 2009

Getting through it

Today is two days post chemo. I am getting by but suffering some side effects. GI upset, mouth sores, stomach pain and some loss of sensation in my hands. I am not going to do neulasta this time. I am going to use neupagen. I will inject it myself tomorrow and Saturday. When I go in Monday for my herceptin they will check my blood counts to see if I need a third shot. They said you can still get bone pain with the neupagen but it shouldn't be as bad. I hope they are right.

Thanks everyone for the well wishes and support. I really appreciate it.

Tuesday, December 29, 2009

Hair Loss, Not Head

I took a shower today and about 1/3 of my body hair came out. I know this may be too much information, but the reason I write it is that it proves my hair follicles are being damaged by the chemo. However, I have not lost more than a few strands of hair on my head. The Cold Caps are obviously working.

If I were losing the hair on my head in clumps I would be having a complete breakdown right now. Thank-you to everyone at Penguin Cold Caps, thank-you to the people at who recommended trying them and most of all thank-you to everyone who donated so I could use them. I am really thrilled.

Monday, December 28, 2009

Pictures Chemo #2

Chemo number 2.
Vanna seeing how cold the caps are.

Vanna kneeding the caps to the proper temperature.

Vanna and Cathy checking the caps.

Cathy holding up a cap.

Smudge wearing a cap with his Momma.

TCH Chemo #2

Today was my second "big chemo". It was taxotere, carboplatin and herceptin. I was very stressed out going into this. Its really hard when I know I am feeling pretty good right now and won't shortly. It was a whirlwind getting it all together. The ice, thermometer, breaking up the ice, packing the coolers, etc. Then going to othe drug store and fighting for the pills. They are supposed to be monthly but I am getting chemo every three weeks. This all while worrying about neglecting Julianna. My brother Rich was visiting so he was able to amuse Julianna for awhile. She is now staying at my friend Colleen's house. It is a HUGE help.

We got there with the packed cooler. Cathy and Vanna came. Cathy was going to teach Vanna what to do. They didn't like the idea that I had two people with me so we had to do the teaching part fast and Cathy had to leave. Despite Cathy's absence Vanna did a great job. we started the Cold Caps around 2. We finished them at 9pm. It was a very long day.

I didn't have any immediate side effects. When I got home I was having some trouble with balance.

The nurses at the chemo place said I should lose my hair by Christmas. It is still here. Today they said I should certainly lose it after this treatment, I am planning to prove them wrong.

Keep your fingers crossed that I have no side effects this time. Thanks so much for your support!

Tuesday, December 22, 2009

Herceptin #3

I had my third herceptin on Monday. It wasn't too bad. I am having some GI issues (still) and nosebleeds. Not too bad though.

The nurses at chemo were surprised I still had my hair. They said the real test is this week since it is almost always gone by the third week. I haven't seen ANY signs of loss. I am feeling pretty confident.

Thanks everyone!!!!!!!!!!!!!

Saturday, December 19, 2009

Happy Birthday Nancy!!

Happy Birthday to my cousin Nancy!! I hope you make it through the blizzard. Here is some cake!

Friday, December 18, 2009


Going for a walk in the cold.

Me walking with Julianna, Smudge and Haley.
Cathy pushing Julianna. Smudge is running after them.

Cathy with her dogs Haley and Pippin.

We are supposed to get a big blizzard tomorrow. It is super cold out. Despite this I thought it would be a good idea to go walk. I bundled up Julianna, took Smudge (naked) and went up to Syosset to meet Cathy and her two dogs. Cathy's dogs were wearing their winter coats. Smudge's God given coat is pretty think and he hates clothes so he went as is. When we got there the car said it was 25 degress, waaaaayyyyyyy warmer then the cold caps.

We walked around the big field twice. It was nice. Julianna loved watching the dogs run. Despite the cold walking was a lot easier then it was the other day. So things are really looking up. I feel sooooooooooooo much better then I did. It is nice that the body can rally and bounce back.

After the walk we went to the grocery store to buy things in case we are snowed in for a few months. We are ready for whatever nature brings.

Tuesday, December 15, 2009

Getting Moving

Today was a pretty nice day. It was over 50 degrees which is great compared to how it has been. I am still having bone pain and stomach pain. I am also now getting mouth sores, also a side effect. Despite all that I knew I had to get moving today. I took Smudge up to Syosset to walk around the big field. We went around twice. Every step was hard but I know I really have to do it. It is about a mile around. After that I went to the grocery store, also exhausting. Its amazing that it can be so hard to do such normal things. I refuse to give in and Smudge won't let me.

I am going to try to move a little every day. I am hoping this bone pain goes away soon. I am not going to do the neulasta next time so I shouldn't get it again. If anyone wants to walk give me a call. I will go with you!

Monday, December 14, 2009

Herceptin #2

I went to see Dr. Citron (oncologist) today and then had my second herceptin infusion. Dr. Citron asked how it was going since the first big chemo. I told him about all the side effects I was having. He said the first one is often the most difficult because we don't know what to expect. Now that we know, we can treat the side effects. He said the stomach pain, nausea and bowel issues are because the chemo kills the lining of the GI tract. Then, when you add the decadron (steroid) you can get lots of issues. Not everyone does. I did. He gave me prescriptions for axid, prevacid and carafate. They are all to reduce acid or coat the GI tract. He thinks these may help a lot. He said a lot of people are on these everyday for all the months of chemo. He also told me we will skip the neulasta next cycle. We can do neupagen instead. Neulasta is the long acting form of neupagen. They checked all my blood counts and everything was within normal range. So, the neulasta did its job. Next time I hope I have the same counts with the neupagen. He also weighed me. I GAINED 3 pounds. I can't even believe it. They say it is from the steroid. I would figure I could at least lose a few pounds while doing chemo.

I then went to the infusion room for the herceptin. I was looking around and the room was really full of sick people. I mean visibly sick. I can't help but think, what the h%^& am I doing here? I feel like I got on a plane to Florida and it landed in a foreign country. I sure hope my hair stays in and I don't get yellow, pale, puffy or gaunt. I do not want to blend in with this group.

I asked them if I could exercise and they said yes. The last few days there was no way but I am really going to force myself to walk if I can. I finally got the results of my MUGA scan and my ejection fraction is 69%. I am told that is excellent. So I have no excuse to sit around too long.

The herceptin infusion took about an hour. I had some port issues but eventually it got going. That's two down on herceptin. I am not 100% sure but I think I need 15 more.

Thanks everyone!!!!! Thanks for your support. Julianna says "donk do."

Sunday, December 13, 2009

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.

Wednesday, December 9, 2009

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.

Monday, December 7, 2009

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.

Sunday, December 6, 2009

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.

Saturday, December 5, 2009

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!!!!!

Friday, December 4, 2009

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!!!!!!!!