Friday, April 23, 2010

Warm Water! Ecstasy!!!!

Always remember to forget the things that made you sad,
but never forget to remember the things that made you glad.
- Victor Borge

Today was the first day after my chemo that I could wash my hair with warm water. It was amazingly great! I know that may sound like a simple thing, but I have only been able to use cold water on my head since December 5th. To save the hair you have to wash it in cold water to try to keep the follicles closed. So today I washed it with warm water and regular shampoo and it all stayed in. It feels cleaner than it has in months. I just love it.

My eyebrows are goners. I have about four hairs left on each one. I was trying to do an eyebrow combover thing but its not really working. When I wear sunglasses they are covered up. I think I am going to attempt to do the eyebrow pencil but I am worried about a cartoon look. Oh well! I really am not too upset about it. I would be about the hair on my head and that is there.

Julianna, Smudge and I met my friend Cathy and her dogs and we went on hike today. It is a nice day and it was great to get out and enjoy it. I am trying to walk everyday. I need to practice for the breast cancer walk but I need to exercise in general. I do agree that it is good for the body and the mind.

Thanks to everyone for all the support!! Thanks to Frank Fronda for inventing the Penguin Cold Caps and everyone at the company.

Monday, April 19, 2010

Pre-ecampsia and HELLP Syndrome

I found out today that vitamin D deficiency can also cause pre-eclampsia and HELLP syndrome. I had pre-eclampsia that progressed to class 1 HELLP syndrome (hemolysis, elevated liver enzymes, low platelets) when I was pregnant with Julianna. This caused me to be extremely ill. I had kidney, liver and heart failure. Because of my illness Julianna had to be delivered via emergency c-section and was premature. This also caused her to have severe intrauterine growth restriction. She was 3 lbs., 8 oz.

I thank God everyday that we both recovered. I know the odds were very much against me surviving at one point. Julianna is thriving and does not seem to have any problems despite the dire warnings I received from the doctors. We really lucked out.

Fast forward 18 months, I find out I have breast cancer. Could it be that both of these incidents were caused by the same thing? I will never know. But I am amazed that a simple blood test and a $5 prescription could possibly have prevented all of this.

Four Weeks Since Last Chemo

Today it is four weeks since I had the last chemo. I am slowly progressing. I am enjoying spring, Julianna and life in general. I am able to do more than the doctor thinks I can do but less than I think I can do.

I am still having some side effects. I am having a lot of pain in my right arm. I always got joint pain after each chemo but this has not resolved. I brought it up to the doctor. I said it is freaking me out because my Mother's primary bone cancer mets were her arm and her neck. He said it is extremely unlikely for cancer to recur or advance during chemo or herceptin treatment. Whew! However, my arm seems to be getting progressively worse. I did plant a lot yesterday and I always pick Julianna up. Maybe it has nothing to do with the cancer, chemo or the surgery. It would be nice to just have tennis elbow or something completely unrelated.

I am going to go to the breast surgeon for a six month follow up soon. She may be able to tell me if the arm problem is anything (lymphadema?) or if I should go see an orthopedist. I will be happy to see Dr. Kostroff. She was awesome.

My sense of taste is coming back slowly. I am enjoying that! I still have a few mouth sores but they are getting to be smaller and smaller. I couldn't eat a lot of things and I am starting to want to try them again. Food is pretty good!!

My hair is doing really great. I still lose some strands when I wash it or brush it but it is getting to be less and less. The Penguin Cold Caps really do work! I was pretty skeptical myself. I knew if I didn't do it I had 100% chance of losing my hair, but I had some chance of it working if I tried it. The people in my chemo office said it would never work. They are surprised. I wish more people knew about it.

Today when I was driving on lunch I opened all the windows in the car and my hair blew around until it was quite unruly. It sure is nice to have hair!

Thanks everyone!!

Tuesday, April 13, 2010

Blood Counts, Vitamin D

I went for my herceptin infusion yesterday. I am 3 weeks post chemo. My blood counts are still very poor. They said it may take some time for them to get into the normal range and up to a year for them to get where they were before I started chemo. They also told me it will take at least 8 weeks for the chemo drugs to clear out of my body. It makes me feel a little better that there is a reason I feel this way and my lack of energy is not just from being lazy. They said it is surprising I am doing as much as I am. That makes me feel a bit better too. I am working, taking care of Julianna and trying to walk as much as I can.

Yesterday after work Julianna and I walked up to the duck pond. She was in the stroller. It is a little over 2 miles for the round trip. She loved it! The geese went after her and then the swan went after the geese. They all wanted the stale saltines we brought for them. I was a bit wiped after we got home but I know I need to keep doing the walks.

I was also told that my vitamin D level is extremely low. It was also low before I started the chemo. They do not give supplements during chemo. My level was 14. The normal level should be between 30 and 100.

There is a high correlation between low vitamin D levels and breast cancer. Almost all pre-menapausal women with breast cancer have very low vitamin D levels. I knew this and had been taking vitamin D before I was diagnosed with breast cancer and was taking prenatal vitamins. They told me it has nothing to do with the foods or supplements I was taking. The issue is that my body is not metabolizing it correctly. The normal recommended daily allowance for vitamin D for adults is 200 iu daily. I will now be taking 1000 iu daily and 50,000 iu once a week. They will continue to monitor my levels and if it doesn't go up they will give me intravenous vitamin D.

Breast cancer recurrence is much more likely if vitamin D levels are low. They will try to keep my level up to reduce my risk of the cancer coming back. My chemo office said all women, especially those at high risk for breast cancer, should have a blood level done for vitamin D. It isn't enough to just take an over the counter supplement. If it is low because you are not metabolizing it correctly you need very high, prescription only vitamin D.

I wish I had known my level a few years ago, maybe this whole thing could have been prevented. Obviously this is not the only thing that caused my breast cancer. They are not really sure exactly what does. But, it was surely a contributing factor. Maybe someone reading this will find out their level is low and prevent it themselves. If you google vitamin D and breast cancer you will find tons of informative articles.

Thanks everyone for all the support. My hair is still doing great. My eyebrows are pretty bad. I may draw them on like Joan Crawford in Mommy Dearest. LOL!

Friday, April 9, 2010

LI 2 Day Breast Cancer Walk

The difference between the impossible and the possible lies in a person's determination.
~Tommy Lasorda

I am going to walk in the LI 2 day breast cancer walk. It is 35 miles over 2 days. It is a big challenge for me after four surgeries and four months of chemo. I am going to get out and walk in preparation. It is important to me to get out there and walk because I would like to help raise money to stop this disease.

If anyone is interested in walking with us the team name is Blue Butterflies. You can sign up at It is a great way to do something that is good for you for a good cause.

I have set a personal goal to raise $2500. If anyone would like to sponsor me the link is: You can just put in Humphrey in the last name section. All donations are tax deductible and it is a great cause. Just think, it might be your donation that funds the research for a cure, or better still prevention. .I hear they are working on a vaccine. Wouldn't that be great?

Maybe together we can eradicate this disease.

Wednesday, April 7, 2010

Back in NY

We are back in NY. I am at work and Julianna is at babysitting. She was so happy to get there this morning. She said bye bye Mommy and closed the door to Christine's house. She was ready to play. It is sometimes weird for me that at two she has her own life in some ways. She has things she likes that I didn't introduce her to, people, activities and all sorts of things that she does without Mommy. I am sure people who have big kids are used to all that. I am glad she can tell me about some of it at the end of the day.

Florida was nice. It was great to see my Dad and Betty and all the relatives at Joe and Mary's house. It is a little bittersweet to see my Dad. The dementia is really taking him away. He can tell you a story about twenty years ago but he has forgotten how to use a light switch. It is heartbreaking. Luckily he still remembers us. He loves Julianna and she loves him. She wraps her chubby little hands around his neck and says "I wuv you Pop-Pop". That makes all the struggle to get down there while not feeling well completely worth it.

Julianna did lots of great things down in Florida. She saw the Easter bunny and went on an Easter egg hunt. She looked pretty cute. I put Easter ribbons in her hair. They came to me from my cousin Susannah who brought us some delightful treats from Bon-Bons. They had a beautiful Easter egg ribbon on them and I put it in Julianna's hair. She loved it and it was super cute. We went over to Joe and Mary's house for Easter. It was very nice and Julianna had a great time playing with her cousin Michaela. We went out to eat a few times, browsed in some shops and did a lot of relaxing.

I did have a bit of a hard time getting through the airports. It is a little tough traveling with an active two year old, but when you throw post chemo fatigue and pain on top it is really hard. I started the trip with swollen hands, feet and joints. They were super huge following each plane ride. I don't know why the plane can make you swell up, but it does. I am still pretty swollen today. I am hoping it goes down soon.

It is a beautiful day in NY today. It is supposed to be about 85 degrees. The flowers are blooming and everything is beautiful. When I started chemo in December I never thought spring would get here. It has and I am loving it. Baseball has started and the Mets won on opening day. Julianna wore shorts today, Smudge has his baby pool and umbrella out, the sun is shining and all is right with the world.

Thanks everyone for all the support!!

Thursday, April 1, 2010

Getting Ready For Florida

I am still a little under the weather. We are going to Florida today so I am pretty happy. Grandma and Pop-Pop's house where Julianna will be spoiled rotten. She loves that. Who wouldn't? We will also see a bunch of people for Easter. I am looking forward to it.

I must admit I am a little worried about the airport. We are going to the airport in Islip. I have never flown from there but I am told it is pretty easy. I am worried about carrying everything because my hands are numb and swollen and my joints are swollen. I don't have any trouble picking Julianna up so I am hoping it will be fine. My face is super white from anemia. My face is swollen from the steroids. My eyebrows are almost gone. My hair is still doing ok. All in all I am a bit of a wreck but I am trying to act as if nothing is up. I am hoping in a few days that will really be the case.

It is supposed to be beautiful here in New York for Easter. I hope everyone has a great Easter!!!! My Dad and Betty don't have an internet connection so I am not sure if I will write on here until we get back. Thanks everyone for all the support!!