Wednesday, June 30, 2010

Happy Birthdays

Today is my Uncle Bill's birthday and my Mom's. Happy Birthday Uncle Bill!! Happy Birthday to my Mom up in heaven. It is a special day that brought two great people to the world.

Thursday, June 24, 2010

Moving Along

It's a blur since they told me about it
How the darkness had taken its toll
And they cut into my skin and they cut into my body
But they will never get a piece of my soul
~ Melissa Etheridge (I Run For Life)

I am feeling a lot better today. When I asked Dr. Keller when I could drive he said "You? Tomorrow, because you will anyway." I guess he really has gotten to know me. I really can't let all of this keep me down.

I called and spoke to Julianna who was at my Dad and Betty's. She kept saying "Momma, Momma". Then she was saying "go to Mommy's house." So I knew I had to go get her. She has a great time with Grandma and Pop-Pop but I know she misses me, her dog and her bed. I kept calling them and there was no answer and the machine didn't come on. There was a big storm that hit the north shore of LI really bad so I figured they had no power. I picked up a pizza and a salad in case they couldn't cook and drove up there. It took an hour to get there due to all the traffic signal lights being out. There were people directing traffic and it was really slow. When I got there, sure enough, no power.

Julianna was thrilled to see me. We visited there a little while and while we were there their power came back on. I was glad because it is over 90 degrees out and it is too hot for them. I asked them if they wanted to come to my house before the power came back on but they were reluctant to leave. I am glad they have their ac back.

Julianna was out cold before we got home and she is sound asleep in her crib right now. I am glad she is back here. I will still need help with her during the day but I am ok for her to sleep here. I can pick her up but I can't do it all day long.

Perfect sleepy girl back home in her bed

Day After Surgery

The surgery is over and I am glad. I am pretty banged up but I am feeling a lot better today. I am sorry to say I think going back to LIJ was a big mistake. I had one day surgery so I was in the Ambulatory Care Unit. The room they put me in had a wall of glass into the hallway. I guess at one point it must have been an isolation room. There were hooks for a curtain but there was no curtain. So each time they came to check my breasts or hips anyone walking by could see everything. They don't let you wear underwear when you get surgery so every time they pulled the gown off it was a complete crotch shot for anyone walking by. I now know how animals in the zoo feel.

When I told them I needed to go to the bathroom they said I couldn't get up yet. So they gave me a bedpan. No big deal normally but with no curtain it was pretty bad. They had no food, no juice and no paper towels or soap in the bathroom. I finally got to go to the real bathroom just before I left. I would not recommend going there.

My friends Colleen and Bob picked me up. They were great and I am glad because I was in a pretty bad mood by the time I got out of there. Starving, in pain and humiliated.

My breasts still look very uneven to me. I am hoping something settles down and they get more normal. I don't care so much how it looks naked, but I want them to look normal in clothes or a bathing suit. I am posting pictures. The bruising is worse today than it was last night. It doesn't feel as bad as it looks. Julianna was supposed to stay at my Dad and Betty's tonight but I may go get her. I was told I can drive when I want to.

Waiting for surgery
Waiting for surgery. They gave me this gown that they hook up to an air blower. It blows warm air in to keep you warm before and during surgery.
My right hip. He took some fat out but not enough. LOL
My left side. You can't see it so great in the picture.
The difference in my breasts. Its pretty profound so I am disappointed. I am hoping it changes as things settle down. There is more surgery to come.
I am feeling ok, just disappointed with the whole experience. They gave me tons of pain med scripts but I am not filling them. I will fill the antibiotic. I also need to take benadryl because the general anesthesia causes me to have severe itching. It happened each time I had surgery.
Thanks everyone for all the help, prayers and understanding. I have the best family and friends and feel very blessed to have you all in my life!!!!

Wednesday, June 23, 2010

Out of Surgery

This is Kathleen, MaryEllen's sister. I just spoke with Colleen, and MaryEllen is out of surgery and now at home. She is pretty miserable, but as well as can be expected. She has excellent friends. She'll update us as soon as she's recovered enough to do so. Thanks for your prayers and support!

Tuesday, June 22, 2010

More Surgery Tomorrow

I am having more surgery tomorrow. Of course I am pretty stressed out about it because it is causing me to go back to zero again. They are going to replace the tissue expander with an implant. They are also going to take some fat out of my hip and add it to the right breast to give it a more breast like shape. He told me it wouldn't be enough fat removal to make any noticeable difference. I advised Dr. Keller that I was ok with him taking out more and wasting it was fine with me. He laughed about that but I don't think he is going to do it. Bummer.

There is a big dent in the top of the right breast. That is because they used fat from my abdomen. That fat has a breast like feel but it is not shaped like a breast. It is not supposed to be. They have to do revisions to make it more normal. They would have had to do that and it is not due to error.

The left side is an expander because of the errors. The expander has to come out because it is not made to be in there long term. The other problem with it is that the fill has metal components and it is blocking my MUGA (heart) scan. They have to do the heart scans on me every three months because the herceptin I get every three weeks can be cardio toxic. They want to make sure the drug is not having toxic effects. When I had the MUGA scan with the expander in they had a great deal of difficulty because the metal fill is directly above my left ventricle. The left ventricle is the area they need to see because that is what would thicken if the herceptin is causing congestive heart failure. The expander needs to come out because that scan is essential.

As much as I would like reconstructive success I would almost leave it for now because I am so sick of surgery and treatment in general. I can't because of the scans.

I am biting the bullet and putting some pictures on here. I am doing it because I have received a lot of email from other women who have done theses procedures or are about to do it and they want an honest account of what its like. It is not so great but I wish I had some real honesty when I was getting ready to go there.
This is how it looks right now. There is about a four inch difference in height. Its hard to really see it in the picture. I have looked this way since October.

This is how it looked after the second surgery when they had to remove the transplanted tissue.
I would never put these pictures on here if I actually felt like they were breasts. I don't feel like they are. The tissue feels essentially dead. There is really no sensation because they cut the nerves when they do the mastectomies. I can feel pain to the area but the skin itself really has no sensation. They say that may change but they are not sure. It is different for everyone.
I am hoping that I will have more symmetry after surgery tomorrow. I am hoping that I will not have drains. Dr. Keller said I am not likely to need drains but he couldn't guarantee it.
Julianna is going to Grandma and Pop-Pop's house until Friday morning. After that she is going to go to the O'Brien's house and on Sunday my friend Vanna is going to take her. I am really lucky that she can go be with people she loves and is comfortable with. I am truly grateful to have so many awesome people in my life. Thanks for all the good thoughts, prayers and positive vibes!!!!

Sunday, June 20, 2010

Happy Father's Day!

Other things may change us, but we start and end with the family. ~Anthony Brandt

Happy Father's Day!!!! Julianna and I met my Dad and Betty and we had a nice dinner. Julianna is always so thrilled to see her Pop-Pop! She loves Grandma too of course but she has an extra special time with Pop-Pop.

Julianna is going to stay with my Dad and Betty when I am having surgery. They will pick her up from babysitting and keep her for two nights and one day. She has a lot of energy so I am hoping she doesn't wear them out too much. It is nice to know she will be in a place where she will be so loved and spoiled rotten to boot. It does help me to relax knowing she will be so happy.
Julianna and Pop-Pop

All of us at dinner

Saturday, June 19, 2010

Enjoying Summer

In summer, the song sings itself.
-- William Carlos Williams

I am trying to do a lot of fun things with Julianna since I might not get to for a few weeks. Yesterday we went to the beach. She had a great time. They have a new water playground there and she liked that a lot too.

When we got home Smudge was in his baby pool. Julianna decided she should strip down and jump in with him. She did and they had some fun in the pool. Smudge really is a good sport.

The Mets have been winning and the weather is great!!!

Monday, June 14, 2010

Fire, Beach, Herceptin

While we try to teach our children all about life,
Our children teach us what life is all about.
~Angela Schwindt

I had a fire at my house. It was outside and really didn't do any damage. It was a little freaky though.

My tenant called me to say there were some flower pots on fire on the side of the house. He put them out with the hose. He was home on his lunch and noticed a bunch of black smoke. I called my neighbor Bobby and asked him to check it out. He said all the pots were melted and he took them all away from the house. I called left work and called 911 for a police report. The police and fire department came. I hadn't requested the fire department. The fire department called the Fire Marshall because it looked suspicious. The Fire Marshall called the Arson Bomb Squad. The Arson Bomb squad detective said he thought it was probably spontaneous combustion. However, he wasn't sure. He said spontaneous combustion happens in peat moss. This was dry peat like potting soil and there were two plastic pots stacked together. This is a situation where this can happen, but, it was raining pretty hard. He said it is less likely to happen in the rain. He still thinks it might have been spontaneous combustion, but he said he can't rule out arson. The official report says fire, unknown method of ignition, suspicious circumstance. I wish I had surveillance cameras on my house.

Julianna and I went to the beach yesterday. It was great. She wanted to go. She kept saying "beach with Momma". I said "Momma says yes". She loves digging in the sand and putting sand and water from bucket to bucket. By the end of our stay there I felt like Jill. Jill of Jack and Jill because I fetched a pail of water over and over.

I am trying to do a lot of things with Julianna because I am going to have surgery next week. After the surgery I won't be able to lift her and I won't have her for a few days. I know I overindulge her. Most only children are a little spoiled. In her case she has my fear of the cancer coming back and my worry of not seeing her grow up. So of course I will do every little thing to make her happy at all times. "Buy this!" "Momma says yes!" I may pay for this later.

I had a herceptin infusion today. It gives me a headache, runny nose and some flu-like symptoms. They also did my blood counts. Still not great. Still pretty anemic. I now know why I didn't have much energy for the breast cancer walk. But I did finish. They were pretty surprised. I feel better every day.

Thanks everyone for all the support!!!!!

Monday, June 7, 2010

LI 2 Day Breast Cancer Walk

When the world says, "Give up,"
Hope whispers, "Try it one more time."
~Author Unknown

We completed the LI 2 day breast cancer walk. It was hard but we walked every step! We never took a ride even though they offered a lot of times.

I dropped Julianna off at Rosanne's house at about 6 am. Vanna and I then drove to Smith Point Park. We dropped our bags off at the UPS truck and proceeded to check in and have breakfast. We met my cousins Susannah and Lisa there. I also saw my friend and childhood neighbor Dona Marzigliano Brannigan. I haven't seen her in over 20 years. We talk on facebook . She has done this walk 7 times and she inspired me to do it.

The first day we did 20 miles. We got to lunch after walking about 10. I had a huge blister on my heel at that point. They had a team of podiatrists there. I had Dr. Fryman from Seaford. He fixed it up and I walked the rest of the day. It was hot and humid but there were plenty of rest stops. They had water, snacks and portajohns . The portajohn company had a sign that said "we're number one at dealing with number two". Pretty funny especially to someone whose life is somewhat consumed with potty training.

We were thrilled to get to the end. It was a very long day. At the end they had massage therapists. We took advantage of this and it was great. They also had a really nice dinner. They had hot shower trailers. They were a lot nicer than I thought they would be. It felt great to be clean.

All the tents were set up by volunteers. Our air mattresses were blown up and put inside along with our bags. They had a great band playing but most of us couldn't wait for it to stop. We were exhausted and really wanted to go to sleep. It finally stopped and I fell asleep right away. I couldn't have slept better in the Waldorf Astoria.

At 5:15 they woke us up. Ugggh . I was so sore I had trouble getting out of the tent. We got all our stuff packed up, loaded it on the truck and went to breakfast. At 7 am we started walking. At some points it felt like we were on some sort of death march, but we trudged on.

I was so sore and I had tons of blisters. I am not so sure why I got them. I had shoes that were tried and true, super good expensive socks and I powdered up at every chance. I was told it might be because my feet are still swollen from the chemotherapy. It hurt but I didn't want to stop. They offered rides to the next rest stop or to the end but it was important to me to do the whole thing.

We finally made it to the end where they had lunch. We sat down to eat and they said they were going to do the survivor walk early because they were having a severe thunderstorm warning. So we got ready for that. They had pink shirts for the survivors and my cousin Lisa and I wore those. Vanna and Susannah wore white shirts.

They had a pipe band leading the procession and the whole group walked over a long bridge. When I got almost to the end I saw my friend Rosanne with Julianna and her boys Sean, Connor and Evan. Julianna saw me and started yelling "Mommy, Mommy!!!" I took her and carried her over the bridge. She was really happy to see me but she also loved the band and walking in the crowd.

They had everyone walk in first and then all the survivors walked in last. I walked in with Julianna and my cousin Lisa. When we walked through the crowd they handed us pink carnations. It was really nice.

They had the survivors stand up when they announced the amount of years they were out of treatment. One year, five, ten, fifteen, twenty and up. It was great. It sometimes feels to me as if this treatment is going on forever so it was really nice to see so many people who had completed it. It is nice to see people who finished everything and went on to have happy, healthy lives. I will be thrilled to get there.

I was amazed at how organized this event was. I have done a lot of different group events and nothing ever went as smoothly as this. They had tons of volunteers, police in cars and on bikes, medics in ambulances and on bikes, vans to pick up anyone wanting a ride (very tempting with cute drivers), lots of food, water and toilets at every stop, cheering spots and all kinds of other things. I would recommend this event to anyone.

It did make me realize that despite finishing the chemo I am still not back to normal. I realize my counts are still bad and I am sure that increased my fatigue. I would guess my herceptin infusions didn't help either. But I did finish it!!!!

I am going to do it again next year. My whole team said they will do it again. If anyone wants to do it we would love to have you join us!!

Thanks to all my sponsors, people who encouraged me and everyone who helped. You all rock!

Team Blue butterflies on the first day. ME, my cousin Lisa, my cousin Susannah and Vanna
Me with a picture of my Mom. I carried it with me through the walk.

Dona Marzigliano Brannigan. She has done this walk 7 times. She inspired me to do it.

Vanna at the end of the first day

Team Blue butterflies on the second day.

Me walking at the end with Julianna.

Julianna, Me and Lisa in the survivor area

Izzy Marzigliano (Dona's Mom) on the memory board in the inspiration tent.

Betty Malone (Rosanne's Mom) on the memory board in the inspiration tent.

Elaine Colotti (Vanna's Mom), Virginia Piquet (my stepmother Betty's sister) and my Mom. They were all on the memory borad in the inspiration tent. They are all missed everyday.

Thursday, June 3, 2010

The Rapunzel Project

The Rapunzel Project is a fairly new charity that is dedicated to helping women keep their hair during chemotherapy. They are trying to spread the word about the cold caps, put freezers in chemo offices and help people afford to use the caps.

I had the benefit of an "unofficial" Rapunzel Project when my cousin Nancy rallied and got people to donate so I could use the caps and keep my hair. I don't think people not doing chemotherapy can really understand what a big deal this is. To look normal, even if you don't feel normal, is huge.

I am hoping the word gets around about Frank Fronda and his Penguin Cold Caps. One of the reasons that I was skeptical initially was that I figured if they did work, everyone would be using them. Well they do work but no one really knows about them.

When you are losing tons of battles it is really nice to win one. I lost my breasts, my chance to have another baby, over a year of my life to treatment, but, I didn't lose my hair. I won that battle and it feels great.

If you know anyone about to face this difficult treatment and they are considering using these caps feel free to have them contact me. I would say it is sooooooo worth it!!!

Thanks to everyone on my Rapunzel team!

Tuesday, June 1, 2010

Julianna on the mend

Peace - It does not mean to be in a place where there is no noise, trouble or hard work. It means to be in the midst of those things and still be calm in your heart. ~ Unknown

I still have a lot of work before I get to this definition of peace. I have been letting some stress get to me lately. I need to be more like Kevin Kostner in For the Love of the Game. The movie is about baseball. His character would say "clear the mechanism" and be able to shut out all the stadium noise and distraction and just concentrate on the task at hand, pitching. I could really do that when I was working as a street paramedic. I could completely focus and turn everything and everything else off. Tunnel vision essentially. I need it in life now. Forget about upcoming events (surgery, treatments) and just live in the moment. Please send ideas about accomplishing this if you have any!
Lake Henry.

Our house at Lake Henry

Julianna got strep throat again. Thursday night she was pretty bad. I got the flashlight and checked her throat. It was maroon with tons of white spots. No wonder she was so miserable.

Friday morning I just showed up at the doctor's office. I am sure they loved that but trying to get through to them on the phone early in the morning is harder than getting Bruce Springsteen tickets on Ticketmaster charge by phone. All my years of buying concert tickets made me realize that it is often important to come up with an alternate method. So I showed up. I figured the worst case scenario was that they would let me make an appointment for later in the day. But they saw her. The did a quick culture and it was strep, again. Ugghhh.

Just about two months ago they told me that two year olds don't get strep. I had called in a panic because my babysitter's daughter had strep and I was about to do my last chemo. I figured maybe I could get her on an antibiotic to keep her from getting it and so I wouldn't get it. They told me not to worry, two year olds don't get strep. Now she has had it twice and my friend's two year old twins also had it. They hadn't been near Julianna. So if anyone is wondering, two year olds DO get strep.

We were supposed to leave Friday morning to go up to the lake. We ended up leaving Friday night at about 11:15. We got there around 2:15. She wasn't too bad in the car but she was fussy all that night and the next. She finally started feeling better Sunday night.

The lake is beautiful and relaxing. Julianna went on a jetski ride. We saw my cousin Janet who had some friends up to her place. They came over to visit. We also saw Merle and Betty and a bunch of neighbors we hadn't seen in awhile. Liz, Brian and Amanda came with us and were helpful in keeping Julianna busy while I tried to get some things done. There are still tons of things that need to get done.

I am back at work. I am trying to scurry and get things ready for the breast cancer walk on Saturday. I am still trying to get some sponsors if anyone is interested. I have raised $660 so far but I need to get to $1000. Thanks everyone!!!!!

If you would like to donate you can click on the link below: