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.