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!!!!!!

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.

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 breastcancer.org who recommended trying them and most of all thank-you to everyone who donated so I could use them. I am really thrilled.

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!

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!!!!!!!!!!!!!

Happy Birthday Nancy!!

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

Walking

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.

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!

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."

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!!!!!!!!

Penguin Cold Caps and other things

I am going to do the cold caps. My cousin Nancy talked to a lot of people and they all graciously offered to donate the money so I could try to save my hair. I am overwhelmed by everyone's kindness. I am faxing the company everything and I hope to have it all soon.Thank-you, thank-you, thank-you!!!

The people from the Penguin Cold Cap company are really nice and a pleasure to deal with. I am keeping my fingers crossed for me any for everyone who is watching to see how it goes.

Today I have to go get the stitches out from the port site. It is still a bit sore but it is really not slowing me down too much.

Happy Birthday Kathleen!

Happy Birthday to my sister Kathleen (Kate)!!!!!!!!!
My sister Kathleen flew all the way her from Orgeon for my surgery. She was super helpful and it was really great. I wish we had a chance to do some fun things. I hope you do some today. I wish we were there to celebrate.

We Love you!!!!!!!!!!!

Chemo Port

I had the chemo port put in today. All in all, not too bad. It was a short acting anesthesia, not a general. It does hurt. It feels like I was shot, small caliber. Not that I have ever been shot, but this is how I imagine it would feel. Its sort of like being stuck with a hot poker that makes a hole. I have seen tons of people who have been shot so I have a pretty good idea. That's what happens when you are a ghetto street medic for a long time.

My right arm is a little weak, but I was able to drive about 6 hours later. I just did it lefty and stayed off the phone. Of course I would have done it if I had to throw the iv pole in the back seat, still had the ET tube in and had to bag myself at the traffic lights. I really can't let this thing take over my life so I have to fight it every step. No retreat, no surrender.

I am going to go vist my cousins for Thanksgiving. Despite all this I really have tons to be thankful for, especially my great family and friends who are pulling me through all of this.

My family and friends are the best things I've known
Through the eye of the needle I'll carry them home
-John Mellencamp

New Breast Cancer Screening Guidelines

The new breast cancer screening guidelines are distressing to me. All my doctors disagree with this. They also said it was just one group and the American Cancer Society does not agree with this. They say:

--Most women in their 40s should not routinely get mammograms.

--Women 50 to 74 should get a mammogram every other year until they turn 75, after which the risks and benefits are unknown. (The task force's previous guidelines had no upper limit and called for exams every year or two.)

--The value of breast exams by doctors is unknown. And breast self-exams are of no value.

This makes no sense to me. I found my cancer. Why no self exams? If I had not found it and waited until 50 for a mammogram I would surely die of it. Some people say it is a risk due to radiation. The radiation from a digital mammogram is the same amount you would get in a cross country flight, and no one is saying we shouldn't be flying. If anything they should be saying everyone should get a mammogram and a sonogram every year.

Breast Cancer Statistics

1 out of every 8 American women will develop breast cancer at some point in her life (This risk is 1 in 7 on Long Island)

Breast cancer is the leading cause of death among women ages 40 to 55 (heart disease is the leading cause for womwn of all ages)

250,000 US women living with the disease are under the age of 40

8 out of 9 women who are diagnosed with breast cancer have no family history of the disease

70% of women who develop breast cancer have no identifiable risk factors


I have a number of friends who say they are afraid to get a mammogram and sonogram because they are afraid it might be positive. I agree that it is scary. However, the five year survival rate for breast cancer found in its early stages is 96%. If you wait and it is found at stage four, well, you know.

So many people ask me if they can do anything for me. That is really great. I am ok right now but I might need some help during the chemo. The one thing I would like my female friends to do is to go get a mammogram and sonogram. Think of the relief you will have when it comes back negative. The vast majority of them are. Thanks everyone for your support. I love you all!!

Pictures From Today

I was told I should walk a lot to try to accelerate my recovery. I am doing that a lot and Smudge has been loving it. Today we went to Jones Beach, on the bay side, by the fishing piers. It was a 60 degree November day. It was a good walking day for us both. Later Julianna and I had dinner with my Dad and Betty. They are leaving soon.

The expander hurts a lot but the busier I am the easier it is not to think about it.

Smudge seems to break rules a lot. What's up with him?

Nice day for a swim.

No one in sight, just how we like it!

Julianna having cake at Grandma Betty and Pop-pop's house.

Julianna and Pop-pop.

Pictures - Surgery # 3

Waiting For Surgery

Cathy Wearing the Hat Too!

Dr. Keller Trying To Lighten the Mood (but getting ready to cut)

Post Op, Not Enough Drugs

A Bunch of Stuff

I had my presurgical testing on Tuesday. Next Tuesday, the 24th, I get my port put in. It is not supposed to be a big deal and I hope its not. The next day I am going to drive down to Maryland with my cousin Janet and Julianna. I think Janet is going to do most of the driving but we might let Julianna take the wheel for awhile.

Yesterday I had an appointment with the plastic surgeon. He put another 50cc in my tissue expander. It feels like 1000. I have to get 400cc more before we are finished. It is very uncomfortable after they do the fills.

Julianna is napping right now. Yippie!!! When she wakes up she is going to go to Grandma Betty and Pop-Pop's house for a few hours. This will be the last time until the winter is over since they will be going back to Florida just after Thanksgiving. I am pretty sad about that and will miss them a lot. Julianna has the best time being spoiled by them and I love seeing them all the time too. They have been very helpful to us during this time. We are going to try to go down to visit around Julianna's birthday. Her birthday is January 8th. So if I can do it I will.

I would like to than everyone for their support. I am overwhelmed by everyone's kindness!!! Thanks!!!!!!!!

Chemo and Hair Loss

It is likely that I will lose my hair from the chemo. Obviously this distresses me. Its not that I have such great hair, but none? That's a biggie. The chemo nurse also told me it is likely to come back white. Also, it might not start growing back for a year when I finish the herceptin. The herceptin doesn't usually cause the hair to fall out, but it sometimes slows the regrowth.



I was doing some research online and found a product called Penguin Cold Caps. It is supposed to stop or greatly reduce hair loss from chemotherapy. I checked on breastcancer.org and a number of women used it with success. Most of them had some thinning but not total loss. I have tons of hair so some thinning wouldn't be so bad.



The Penguin Cold Caps keep the scalp and therefore the hair follicle cold. It is used just before, during and just after the treatment. The theory behind this is that the hypothermic condition of the follicle causes it to be unable to absorb the chemo agent and therefore it is not damaged. Apparently they use this theory in parts of Europe and the UK. During chemo there they sit under what looks like an old fashioned bonnet style hairdryer that blows very cold air. They have considerably less hair loss using this system. Europe and the UK are ahead of the US in a lot of ways when it comes to breast cancer.



The downside to this is that it is expensive, about $400 a month to rent the caps. I would need them for about four months. The other thing is that it is somewhat labor intensive. They have to be frozen. Then they need to be transported to the chemo office in a cooler on dry ice. They must remain at 30 deg C. They have to be changed frequently, about every 20 minutes at first and then every 30 minutes. Because of the changing someone has to come along to chemo to do it. The nurses are too busy and my arms won't be free to do it myself.



So my dilemma is, surrender the hair or fight it. I still might lose it but at least I would go down fighting. I spoke to the company, from London (cool accent) and they told me they have a 90% success rate with TCH chemo (what I am having). I have to decide soon.



http://www.msc-worldwide.com/

Chemo Plan and Other Things

My computer died. That is why I haven't posted in awhile. I was unable to resuscitate. I bought a new cheap charlie lap top. So far so good. A lot has happened since I last posted.


Saturday, November 7th, 2009

My cousin Janet came out from NYC and gave me an acupuncture treatment. It was really great. It really gave me some energy and relieved some pain. I did acupuncture for fertility and it worked for that too. Anyone who has any medical problems should give it a shot. After that we both took the train to Madison Square Garden, which is round, for the Bruce Springsteen concert. It was awesome. We had great seats and I had enough energy to really enjoy it. On the way home I was on the train with Rob and Maryellen Lastig. It was really nice to get to talk to them and chill on the way home.


Wednesday, November 11, 2009

I had chemo training. It was interesting but a bit of a bummer. They explain all the medications, how they will be infused and all the side effects. The drugs am having are herceptin, taxotere and carboplatin. I will have the herceptin every week at first and the combination of all three every three weeks. I will explain what each of these drugs are and do.


1) Herceptin (Trastuzmab)- This drug is an anti Her2 monoclonal antibody. The type of cancer I have is Her2 positive. This type of cancer is particularly aggressive. The herceptin specifically targets this protein. It was initially used in stage four cancers only, then three, and now it is used for all cancers that are Her2 positive. It is pretty new for stage one non-recurrent cancers. It has only been used in cases like mine for about two years. Because of that, there is really no long term data on its effectiveness or potential long term side effects. However, there are cases of stage four that have been arrested because of herceptin. It is considered a wonder drug. Up until it was discovered Her2 positive cancers were a death sentence. It goes to show you that all that research money is actually being used. Thanks all you money raising walkers!!!!!


The herceptin infusion lasts about 90 minutes. The side effects are flu-like symptoms. Fever and chills are common. I will need herceptin infusions for a year. It will be every week at first and then go to every three weeks.


2) Taxotere (docetaxel)- This drug works by interfering with the supporting structure of the cancer cells so these cells can no longer grow. It is given by vein. I will be getting this drug six times, every three weeks.


The early side effects are nausea and vomiting and diarrhea. The late side effects are, decrease in blood counts, red cells, white cells and platelets. This may occur about 7 - 10 days after the infusion. Fluid retention, especially in the feet and legs. This may begin around the fifth treatment. Fatigue or joint pain. A rash, usually on the hands and feet, may appear between treatments and will usually go away before the next treatment. Numbness, tingling or burning to the hands and feet. Color changes to the fingernails or toenails. Hair loss, head, eyebrows, lashes and body hair.


3)Carboplatin (paraplatin)- This drug belongs to a group of anti-cancer drugs known as the platinum complexes. It is an alkylating agent. It works by attacking sites in the cells DNA and it stops the division of cancer cells. I will be getting this drug six times, every three weeks.


The side effects are nausea and vomiting within 6 - 12 hours. Taste alterations such as decreased taste sensation or unusual tastes such as metal mouth. Diarrhea or constipation. Hair loss, especially on the scalp. The late side effects are decrease in blood counts, red cells, white cells and platelets.

The nurse gave me a pile of prescriptions. They are for various things, pain, nausea, anxiety as well as decadron ( a steroid) that I have to take the days preceding the chemo, the day of the chemo and the day after. She said most people feel ok until a few days after. I am a little worried about taking care of Julianna if I have really bad days. I am hoping that I don't. I start this on December 7th, my brother's birthday.

They also gave me my H1N1 flu shot. They had no doses of the regular shot but I need to find some.

We also had an appointment with Julianna's doctor. She got the regular flu shot and the H1N1 shot. One in each arm. She didn't even cry. What a trooper!!!!!!!!!!!!! The waiting list for these shots at her doctor was over 1000 kids long. We were given priority due to my starting chemo soon.

Thursday, November 12th

I had two appointments today. The first was at the plastic surgeon. I saw the PA Kelly. She removed some remaining stitches. She did not add any fluid to the expander. I am thankful for that since it is still very painful.

My second appointment was with Dr. Datta. He is a surgeon and will be placing my infusaport. The port willl be just under my right collar bone. It is usually put into the subclavian vein. It can be used to draw blood or to infuse medications. It will be done under general anesthesia and usually takes about an hour. I will be having this surgery at South Nassau Hospital on November 24th, my sister's birthday.

Friday November 13th

I went to my job and saw the Police Surgeon. I was able to get a dose of the regular flu shot. I also got to visit a lot of people. Very therapeutic.

Happy Birthday to my cousin Ruby who is 10 today!!!!!!!!

Drain out!!!!!!!!!

I had my appointment with Dr. Keller. It was a toss up about the drain. It was still draining a little more than they wanted it to. In the end he decided it could come out. Kelly (his PA) took the stitches and the drain out. Dr. Keller added another 50cc to the tissue expander. He said it was a trade off for the drain. So, I love the drain being gone but the tissue expander hurts. He said he is going to add 50cc per week for 10 weeks. This thing is going to look like a watermelon. It is already about 4 inches higher than the right one. They said it is temporary because it is not the final implant and just the expander. It is very noticeable though.

Tomorrow I have chemo training.

Looking Up

Smudge hiking with his Mom

So, things are looking up a bit. I walked to the school to vote yesterday. It is about a mile each way. I do that every election day with my friend Lori. Smudge loves it. Today I took him on a hike up at Syosset. There is a great hiking trail and field there. Its like being far away from Long Island. It is about a mile around this giant field and we did it twice. I also was able to wear jeans for the first time today and that is nice. Sweats get old.



I am hoping they take my drain out tomorrow. Maybe the stitches too. Keep your fingers crossed!!!!!

Tough Day

This surgery was by far the worst of the three. I drove Julianna to my Dad and Betty's today. That was the first time driving since the last surgery. She usually goes there Mondays and she enjoys it a lot. I have been extremely tired. I am having a lot of pain to the surgical site and where the drains are. I called Kelly the PA at Dr. Keller's office. She said that many patients tell her this is an especially painful surgery. I have an appointment on Thursday and I am hoping they will take the drain out. She asked if I thought it looked infected or discolored. It does not.

I do not have a lot of patience. I am not good at sitting still. Julianna is going to stay at my Dad and Betty's tonight. It is a good thing, but of course it makes me sad because I miss her.

If anyone has any ideas about how to accelerate recovery please send them along. Thanks to everyone for the prayers, good wishes, cards, gifts, food, childcare and everything else. And thanks to all the strangers who gave me their blood. I really do appreciate it.

Halloween

Julianna in her ladybug costume
All dressed up

Fancy

Cute as a bug!

Nice!

I was so happy that I got Julianna such a great costume. Then when the day came I could only take her to two houses. It was so disappointing. She looked so cute and she was so excited. I just couldn't do it. Some of my friends took her to a few more places. I am hoping that I am feeling better later in the week and I will take her up to my work and to Grandma and Pop-pop's for some pictures. I am hoping things start looking up soon.

Post op

So far this is the worst surgery of all of them. I am questioning why I decided to reconstruct at all. There is nothing that helps the pain and I have tried them all. If anyone has any iv pain meds please stop by. I think taking Julianna around in her costume tomorrow is not going to happen. Right now I can't even take a halfway deep breath so a walk is out of the question.
please keep your fingers crossed that this turns around soon,

Home from Surgery

Mary Ellen called me, sounding pretty good, and asked me to post. She is home from today's surgery, but she is in a lot of pain. Cathy is with her. She will post more tomorrow when she feels up to it. Love, Kathleen

Off to Surgery

Stay on the streets of this town and they'll be carving you up alright.

Bruce

Cathy is here and we are off to the hospital. If all goes well I will be home tonight. Keep your fingers crossed.

Today - Pictures

My Mom, Passed away in 1981 at age 44

Julianna trying to put flowers on my Mom's grave

Julianna trying to carry the flowers and her ducks

Julianna not understanding that you are supposed to put the flowers on the grave, not your whole self.

Julianna

My Mom

Today is the 28th anniversary of my Mother's death. We always thought she died of multiple myeloma. After I was diagnosed with breast cancer almost every doctor I saw said that is highly unlikely. They said women of that age really don't get that. They asked where her primary bone sites were. When I tell them it was her arm and her neck they just shake their heads. They all say that it is much more likely that it was breast cancer that went to her bones. Which is, of course, where breast cancer goes.



I have a strong memory of her having a lump in her breast. I was about 14 or 15. She went to her OB/Gyn and he told her it was a clogged milk duct. She was so happy when she heard that because it eased her mind. She had nothing to worry about. She was dead a few years later. She never had a chance.



Things have changed a lot in 28 years. Treatment has progressed so much. I don't think a doctor would sent anyone with a suspicious lump away with no further checking. When I went I had a needle biopsy, mammogram, sonogram and core biopsy within a week. I don't think there was too much they could do back then to save you anyway, but I wish she would have had a shot.



So, I am not positive she died of breast cancer but I am 90% sure. This is from what all the doctors said plus research I did about both things. Her disease really did progress like untreated breast cancer. It also follows the timeline. It often occurs about two years after a pregnancy. It also takes about 7 or 8 years to kill you if you do nothing. My brother Richard, the baby, was 10 when she died.



This is interesting because up until I was diagnosed it never occurred to me that I had any increased risk. My Grandmother had it but she was over 70 when she was diagnosed. They say that isn't an increased risk for others. My first cousin also had it but she always thought her risk was from her Dad's side. She is BRCA+ and I am not, so maybe that is true.



Julianna and I went to the cemetery today. I was trying to get her to put flowers on my Mom's grave but she really didn't want to cooperate. First she took all the petals off one flower. Then she sat on the grave marker. After that she tried to take all the flowers off the other graves. Finally we got the flowers on there. RIP Mom.

MUGA scan

Today I went for my MUGA scan. (Multi gated acquisition scan) It is a nuclear medicine scan used to evaluate the function of the heart ventricles. I had this test to determine a baseline of my heart function. The reason for this is that the herceptin I will be taking can cause damage to the heart.

When I got there they took me in pretty quickly. The doctor gave me an intravenous injection of tin (stannous ions). I then had to go back to the waiting room and wait half an hour. They then called me back and gave me another intravenous injection of a radioactive substance (technetium-99m-pertechnetate). The technetium labels the red blood cells and the stannous ions keep the technetium from leaking out of the blood cells and dilutes it somewhat. She was actually pretty good at hitting my veins and I would like to bring her along to wherever the next place will be.

Next, I had to lie down on a skinny table and it moved into a cylindrical device which was a gamma camera. It can detect the gamma radiation given off by the technetium. They moved the table up and moved plates down over me at different angles. They came very close. It made me think that it must be how a bug feels just before it is squished by a shoe.

They did three series of pictures, each at a different angle. Each set took about seven minutes and in between she changed the angles of the plates. The hardest part for me was that I had to keep my arms above my head. That was not so bad for a few minutes but it got more painful as time went on.

The test is supposed to give a series of images of the heart, one at each stage of the cardiac cycle. The images show the blood pool in the heart and a computer is used to calculate the ejection fraction of the heart. Ejection fraction is the fraction of blood pumped out of a ventricle with each heartbeat. The normal value is between 50 and 80. If my ejection fraction should decrease during treatment with herceptin it means that it is damaging my heart. The damage sometimes repairs itself when herceptin is discontinued. Of course I did not get any results. They always make you wait. I will need to get these scans a lot of times during the year I get herceptin and at the completion of treatment.

As I was walking out she asked if I got my bone scan yet. I told her I had it and they said it was fine. As I got in my car I started thinking. Why did she ask that? Did she see something on my sternum? Can she even see anything like that on this scan? Is it in my bones now even though it wasn't six weeks ago? I realize I have to chill. I guess when you have this you always worry. I know I will. I don't know when I will stop worrying. I wish I could start the chemo right away. Tonight would work for me. Unfortunately it won't be for a few weeks. I need to know I am doing everything.

So, again I have to flush twice due to radioactivity. Also, my dog Smudge loves toilet water and I have to make sure he can't get near it. He learned that bad habit at my neighbor's house. I don't want him to glow, even if I will soon.

Stitches Out - Planning For Surgery

I went to see Dr. Keller today. First the PA took out all the stitches. It took a long time and it looked like a big pile of dead bugs by the time she was finished. After she was finished I saw Dr. Keller. He explained that the surgery on Tuesday would be to place a tissue expander. It will go behind my pectoral muscle. He said he would have done it when he removed the failed flap but my risk of infection after two surgeries was entirely too high. He said it is still higher than he would like, but we can't wait anymore. We can't wait because the skin will start to contract if it isn't filled. If you lose your original skin reconstruction is not so great. We also can't wait any longer because they won't start chemo until it is completely healed. If we did, there is too much risk of infection. We don't want to wait on the chemo any longer than absolutely necessary.

He said to expect this surgery to be pretty painful. He said it wouldn't be so bad normally, but it is already pretty inflamed after two surgeries so it will hurt. He said I will get a drain again. That is a bummer since I just got rid of six and also because it leaves a scar. More scars. Uggghhh. It will be slightly filled with saline. It will have a port where saline can be added. I will have to go periodically to have it filled more and it will be painful each time because it stretches the perctoral muscle. When it is at the desired size it can be replaced by a permanent implant. They are called that but they are not really permanent. It will have to be replaced every few years. That requires more surgery.

Dr. Keller brought up the possibility of doing another flap. I told him I was open to that, but not now. He said he would never even consider doing it now since I just had so many hours of surgery. He said my body was not in any shape for a big surgery. He said we could talk about it after the chemo is finished.

The surgery Tuesday will be a one day surgery. I am so glad because I have absolutely no confidence in the floor care at LIJ. The only reason I will do this there at all is that I have no choice. Dr. Keller also assures me that I will be very carefully monitored. I can go home at the end of the day. My friend Cathy is going to stay here on Tuesday night to help me. My babysitter Christine is going to keep Julianna overnight on Tuesday. My Dad and Betty are going to keep Julianna Monday night since I have to be there at 6 am. Thanks everyone!!

So, here we go again. I would have gone back to work next week if it weren't for these extra surgeries. It is a big bummer because I am now returning to start after all the post op gains I have made. Hopefully it won't take so long to get better.

Driving around today was great. Since I know I won't be able to do it soon it was even better. I like to drive....fast. LOL. It was warm out. Windows down, sunroof open and great tunes. It doesn't get better. Keep your fingers crossed that surgery goes as planned.

Tomorrow I am having a MUGA scan. I will post about it after.

On the road again!!!!!!!!!!!!

I can drive!!!!!!!!!!!!!!!!!!!!!! WOOOOOOOOO Hoooooooo!!!!!!!!!!!!!!!!!!!!!!!!!!

Dr.Marc Citron

I went to the oncologist today, Dr. Marc Citron. It was good and bad. The good part is that I liked him and the office staff. The bad part is that the facts are tough to swallow. He said my chance of recurrence with no further treatment is 30%. With chemotherapy, taxotere and carboplatin in conjunction with herceptin the chance of recurrence goes down to 10-20%. That seems so, so high to me. This is tons of treatment. Monstrous disfiguring surgery that I have been told left me looking like an aerial view of the Jamaica rail road station (pretty funny actually), tons of chemo and a year of herceptin. I would think the risk would be lower with all that.

I have not been lucky when it comes to medical risks. The risk of HELLP syndrome in pregnancy is .5%. Got it. The risk of the flap failing in a DIEP surgery is about 1%. Mine failed. So when I hear 10-20% it is very scary. The good part about this aggressive cancer is this, if you can get through three years the risk goes down a lot. It goes down a lot more by five years and is almost completely gone by eight years. ER/PR+ cancers retain risk for many, many years. It is not uncommon to hear of a recurrence 20 years later, but there recurrence rate is much lower from the start. So turning 50 will be very happy for me. It freaks a lot of people out, but I will be thrilled to get there.

Of course, I will do whatever they suggest. I will do the chemo. It will be six times, every three weeks. The herceptin will be every week at first and then every three weeks for a year. He said there is an experimental pill for Her2+ cancers. It wouldn't be until after I finish the year of treatment but I told him to sign me up for that too. Experimental or not, count me in.

He said he thinks I can work through treatment. I will need at least one day off every three weeks for the infusion and possibly other time, but he says I can try to do it. This is important to me, to try to stay regular. I have a disabilty policy so I would make more money to stay home, but that is like giving up. I have really never been one to give up easily. Never give in.

I worry about Julianna and how this will all be for her. I also worry about her being the fourth generation to get this. I sure hope they make some progress before that is possible. I hope there is some type of vaccination or other preventative measure. One in seven women on Long Island will get breast cancer. One in eight nationwide. The risk is very high. Way too high.

Drains out!

I went to Dr. Kostroff today. She removed all six of my drains. It hurt a little. My friend Cathy went with me and she said she almost passed out. That would be a bummer especially since she is a paramedic. Dr. Kostroff cut the stitches that held the drain in, opened the drain ball so there is no suction present and just pulled it out. The first one was in my left armpit and that hurt the most. The four abdominal drains weren't bad at all. The right armpit also hurt, but not as bad as the left. The part that was inside my body seemed to be about six inches long on each drain. It was somewhat gross, really.

Now that the drains are gone I can get into some different positions and that helps. All my sutures are in. I am hoping they come out when I see Dr. Keller on Thursday.

Dr. Kostroff also gave me a copy of my final pathology report. It details the tumors and grades everything. My tumor is a grade 3. Bummer as that is the highest (worst ) grade. This means that it is a very aggressive cancer. They grade it using the Bloom-Richardson scale. On that scale my tumor characteristics got an 8 out of a possible 9. There were also three tumors. The main one was 1.7cm. The other two were 6mm and 4mm. The tumor cells of all the nodules show the same morphological characteristics and grade. There were also multiple foci of ductal carcinoma in situ (DCIS) in numerous other areas of the breast. DCIS is considered a stage zero cancer. It is cancer that remains in the breast duct and has not yet invaded other tissue. All the tumors had very wide margins. That essentially means they got it all.

This pathology report makes me so glad I made the decision to do a mastectomy instead of trying to treat it with a lumpectomy. I think knowing it was the right decision helps a lot.

So, the question I keep getting is "Why chemotherapy if they got it all?" The problem with breast cancer is that it can show up many years later in other parts of the body. There can be stray cancer cell that get into the blood or lymphatic system and then grow in other areas of the body. The goal of the chemotherapy is to kill any of these cells. I am not sure what my course of chemotherapy will be. I have an appointment with an oncologist, Dr. Citron, tomorrow. I will find out a lot more then.

Thanks to everyone for all your support. I love and appreciate you all. I am hoping this cancer will soon be a distant memory.

More Pictures

Smudge welcoming his Mom home.
My arms on Sunday 10-17-09.

Post op, second time.

Pictures

Pop-pop, Julianna, Grandma Betty and me. Taken 10-5-2009.

Julianna and her Momma, 10-5-2009


At Bruce Springsteen 10-8-2009

Waiting for surgery. 10-9-2009. Nice jiffy pop hat.

Kathleen waiting for surgery

Home - Slow Recovery

I am home. That is great but this is going pretty slowly. My underarms and hands are especially painful. My hands are really bad because they missed so many times trying to get the arterial blood gases and the arterial line. They are black, brown and green from my hands to just above the elbows. It is hard to eat or turn pages of a book, or type. I think the underarm pain is from the removal of the lymph node on each side. Everything else hurts but is getting a bit better. It is upsetting that I really can't do anything for Julianna. I am thrilled and very thankful that I have so many great people to help. My friend Jessica has Julianna right now. My friend Cathy took my dog Smudge on a hike today and slept here last night to listen for Julianna and me.

Thanks to everyone for the food, visits, calls, cards, babysitting and good thoughts. It makes me know that despite everything I am very blessed.

Final Pathology

I realized I never posted about the final pathology report. The tumor was 17mm. The sentinel nodes were negative. The cancer is stage 1. It is ER/PR negative and Her2 positive. It will require chemotherapy. It might not be as intense a therapy as they originally thought, but that will be up to the oncologist.

Dr. Kostroff gave me the information. She is certainly one of the nicest people I have encountered throughout this ordeal. I meet a lot of surgeons through work. I have to say that a great deal of them have huge egos and the inability to relate to the patient. This is not the case with Dr. Kostroff. She is super kind and compassionate. It is nice to see that, with all her success, she didn't lose the point of the profession. Truly an excellent physician. I go back to her Monday. I am not sure when I will see Dr. Keller. Long road, short steps.

Home - Nice!!

It is nice to be home. I got to see Julianna today. She hopped up on the recliner with me. She just kept saying Momma, Momma over and over. She snuggled in with hrer blanket. I wonder what she was thinking when I never came for her. Its hard to know how their minds work. It makes me sad that even though she was with people who love her, she can't understand what is happening.

This healing process is going a lot slower than I would like. Day to day it gets better but knowing that I am going to be back to zero soon is making it a lot harder. The idea of another surgery is overwhelming to me. I hated the hospital. It was super loud, pain management was terrible. If I go back I am bringing my own tylenol and benadryl. There was a mean nurse at night with a Russian accent. Somehow a Russian accent makes people seem meaner. I think I watched too much Rocky and Bullwinkle when I was a kid.

My sister Kathleen is flying back to Oregon right now. I am sorry this trip was such a downer. We did get to go see Bruce Springsteen, and of course that was great.

Thanks to everyone for everything. You have all have been great and I am really lucky to have such great people in my life.

Home from the Hospital!!!!

Mary Ellen is out of the hospital and resting in reasonable comfort with her beloved dog Smudge by her side. Wonderful friends from work have sent a selection of delicious foods. I'm guarding her rest. I go home tomorrow. -Kathleen

Another Long Day of Discomfort

I was at the hospital all day. At first Mary Ellen was in a lot of pain and we couldn't get more pain medication. Then the nurse, Susan, who has been very gentle and helpful, called the pain management team. They came and assessed her and changed the pain medication and added back the IV Benadryl. I was glad that they were willing to listen to me that so much complaining was wildly out of charachter for her and that I saw a marked personality change which told me the pain was severe.
Mary Ellen's room is across from the office of the nursing manager and she was clearly having a very busy day investigating the series of mistakes that led up to Mary Ellen's loss of the grafted tissue. For a long time I sat in a chair outside ME's room door stopping extranneous entrances to the room, shushing people and guarding her sleep, which was so precious to her. During that time in the hallway it was evident that the staff knows a major incident occurred, and one meeting after another took place across the hall.
We had visits from quality control and other departments which came to get ME's story. I made them come back when she woke up. Dr. Kostroff came to visit. She remains distressed.
I hope to get Mary Ellen home tomorrow and settled in where she can actually sleep.
I will have to fly back to Oregon on Thursday. -Kathleen

From the Hosital - MaryEllen

So, after 20 hours of surgery I only have one breast. The whole point of doing the immediate reconstruction was to have it all over with and now its worse than ever. The first surgery was 15 hours. There was a lot of pain after. The second night I was in excruciating pain. The left breast was so hard and swollen. It was extremely discolored and the stitches were pulled almost to the point of breaking. I made numerous complaints to the nurses and the resident. I called Dr. Keller from my cell phone. No one did anything.

I told the nurse I needed some help and he said he wasn't going to wake the resident again. When the resident came in he said he thought the capillary refill looked fine. It didn't look anywhere near fine. It was obviously filling up with blood that had no where to go. It was strangulating. He just did nothing. The nurses didn't know what they were looking at.

In the morning two surgical residents were doing rounds. They looked at it, freaked out and said we had to go back to the OR. Dr. Keller came in and looked at it and said he was going to try to save it. They took me back to the OR. When I woke up it was 5 hours later. They couldn't save it. The ironic part is that it is not the breast with the cancer.

I spoke to Dr. Keller this morning. He said there were numerous errors made. He feels it could have been saved if he were notified in time. I will need at least two more surgeries.