Thursday, October 28, 2010

Penguin Cold Caps Good Morning America

Hair brings one's self-image into focus; it is vanity's proving ground. Hair is terribly personal, a tangle of mysterious prejudices. ~Shana Alexander

The Penguin Cold Caps made it onto Good Morning America. I have not seen it yet because I am at work. I did DVR it. I saw their story online. Here is the link:

Here is a link to the video:

There are some things I disagree with especially where they say it is linked to increased scalp metastasis. This is not true. It has been studied and there were only 2 cases out of 7800 people in the study.

In early stage breast cancer, the incidence of the scalp as the first site of recurrence is very low. Dean et al (1983) found only 2 patients with scalp metastases in 7800 women with breast cancer treated with mastectomy, with or without post operative adjuvant therapy, an incidence of 0.025%. Clearly, primary metastases are rare.

Does scalp cooling increase the incidence of scalp recurrence in early stage breast cancer?
The most extensive literature report on scalp cooling was conducted by Tollenaar (1994) who reviewed 25 publications (1973 - 88) with a total of 1282 patients. No case of scalp metastases was reported in scalp cooled patients receiving adjuvant chemotherapy. In their own scalp cooling study of 35 adjuvant treated breast cancer patients no case of scalp metastases was found with a mean follow up of over 4 years. More recent published studies involving scalp cooled adjuvant breast cancer patients have not reported any scalp metastases (Ron 1997, Lemanger 1997).

Here is a link to and their discussion on this topic:

If you want to get the Penguin Cold Caps or talk with their inventor Frank Fronda here is their link:

If anyone is reading this to see my cold cap experience it my first chemo was 12/7/2009. There are pictures from each chemo and the first set was posted on 12/9/2009.

If anyone is considering this I am a big fan. Its not just about the hair. It is about winning that battle and regaining control over your destiny. Breast cancer took a lot from me. I couldn't let it have everything.

To everyone newly diagnosed I wish you strength in your fight.

Monday, October 25, 2010

Pictures from Surgery

Here are some pictures from before and after my surgery. I think this one worked pretty decently and I actually have a lot more symmetry.

Just before the surgery on October 11, 2010
Waiting for surgery

About a week after the surgery.
The Good Morning America segment about the Penguin Cold Caps has been changed to Thursday October 28th. They said it should be on sometime between 8 and 8:30. I hope it actually airs.
Today is the 29th anniversary of my Mother's death. Its a long time but it certainly doesn't seem like it. RIP MOM.

Good Morning America

The Penguin Cold Caps are going to be featured on Good Morning America on Tuesday October 26th. They are finally getting some national exposure and I am thrilled about that. I can't say enough good things about them or about their inventor Frank Fronda.

People say, "what's the big deal, it is just hair." But, the reality is that is is so much more than that. To look in the mirror and not see a cancer patient looking back is huge. I think it saved my sanity as well as my hair. Going through the chemo was extremely difficult. Winning the battle with the hair gave me a big victory and it helped me remain somewhat normal.

I have to thank all my Penguin Cold Cap helpers. It was a long day each time for all of us. Thanks to Cathy, Vanna and Rosanne for coming with me and doing such a great job. And, a special thanks to my cousin Nancy for making it possible for me to use them and to everyone who donated to help me! Julianna loves to brush my hair and every time she does I am so thankful.

I had my stitches out on Thursday. Dr. Keller told me I did not do well in the recovery room. My oxygen saturation was under 80 and my respiratory rate kept dropping to 6. They had given me pain medication because I was in a great deal of pain when I was waking up and that really depressed my respiration. I also had a lot of trouble with the itching when I came out of the anesthesia and they had to give me all kinds of things to try to stop that. They also gave me a lot of medication for nausea and vomiting. He said that each surgery has been causing more anesthesia side effects. I told him I think my body is just tired. They wanted to keep me overnight. My friend Lori came with me and she told me to try to get up if I didn't want to stay. I sat up like a giant bobblehead so I could get out of there. They finally let me go. It was a tough night. But, I was able to get back to work two days later. I also walked the Making Strides Breast Cancer walk 5 days after that. I thought it was 3 miles but it turned out to be 5 and I was able to do it.

I have my herceptin today. Three weeks ago when I had it they drew blood to test my estradiol and follicle stimulating hormone (FSH) to see if my chemo induced menopause will be permanent. I will find out the results today. I am trying to decide if I should have my ovaries removed to reduce the risk of them becoming a problem and this test will help me decide. There is a link between breast and ovarian cancer. I don't want to find my self a few years down the road finding out I have that.

Julianna and I added to our family yesterday. She got an orange and white goldfish she named Nemo. We went to a street fair where they had a game to throw ping pong balls its tiny fish bowls. She threw them in and missed each one. Yippie! Then the woman said "everybody wins!" and hands her a goldfish in a bag. She then sold me a cheesy fish tank for $10. So the fish is worth about 19 cents and it cost $5 to play the game and $10 for the tiny tank. The big winners are the people running the game.

I did vow that nothing else that poops was coming into this house, but she loves it. She had to have it sit on her highchair tray while she ate dinner. Then she wanted to feed it mashed potatoes and I had to explain why that was a very bad idea. She wanted it to sleep in her crib with her, also a bad idea. I am hoping it stays alive so I don't have to bring a dead fish to the pet store looking for an exact match.

Thanks for all the love and support!!!

Thursday, October 14, 2010

Feeling Better

My surgery on Monday went well but I had some trouble with the meds. I have side effects from the anesthesia every time, severe itching and vomiting. They pre-medicated me but I still had the terrible full body itching. They gave me a lot of meds for itching, pain and nausea. The problem with that was that it was depressing my breathing and I was not waking up. They had me on oxygen but without realizing it I kept taking it off. They were considering keeping me overnight. I was able to wake up a bit and my breathing began to improve. Luckily they let me go home.

My friend Colleen picked Julianna up from day care and kept her overnight. She brought her back to daycare in the morning. Julianna is a good sport and is always happy but Colleen said she woke up a few times and was asking for me, of course that makes me sad.

I have a lot of sutures in my right breast. It is uncomfortable but no longer painful. I must say I see a lot more symmetry already. My breasts appear to be the same height. The right one does look bigger but I think it is still pretty swollen.

I went to work today and it wasn't too bad. I am going to try to walk in the Making Strides Against Breast Cancer walk on Sunday. It is only about 3 miles and is down at Jones Beach.

Thanks everyone for all the support!!!!

Monday, October 11, 2010

Home from Surgery

Kathleen here: MaryEllen is home from her surgery. It was a further reconstruction procedure, which I'm sure she'll explain when she gets a chance. She's groggy. The hospital wanted to keep her, but although St. Francis Hospital was more pleasant than LIJ, she opted to go home where she might get some rest. She'll update us when she's grounded, and also, when she has replaced her $%&! computer, which suffered a toddler trauma. Thanks for all the good wishes, Love, Kathleen (MaryEllen's younger sister in Oregon.)

Sunday, October 3, 2010

X-rays Negative

My oncology office called to say that my x-rays were negative for cancer in my hip and back. I was doing a pretty good job putting it out of my head while waiting for the results but hearing that they are negative is a huge load off.

Julianna has a 104 degree fever. She took a super long nap and I went in to check on her and she was burning up. I gave her a tylenol suppository and called her doctor. I was worried that she might have a seizure. I guess I spent too many years on an ambulance where febrile seizures are a common emergency. I know that the risk of seizure is usually higher when the temperature goes up fast and isn't always about how high it goes, but I freaked a bit regardless. The doctor said to alternate ibuprofen and tylenol and to stagger them. She goes in to see the doctor at 10 this morning.

Yesterday we took Smudge to the holistic vet out in Speonk and his knee does seem to be improving somewhat. I am really hoping we can avoid surgery for him because he is such an active dog. It would be so hard to keep him still post-operatively. He really is the best dog. He is so patient with Julianna. He lets her try to ride him, put glasses on him, cover him with blankets and read books to him. When I was so sick with the chemo and Julianna was staying with friends he wouldn't leave my side. He would just sit next to me and rest his head on me. I hope he is better soon.

Tomorrow I have pre-surgical testing at St. Francis hospital and my herceptin infusion. My surgery is scheduled for Monday October 11th.