Sunday, January 31, 2010

Nice Weekend

Julianna and I got to enjoy this weekend. Its funny how just feeling ok makes you enjoy things. It doesn't have to be anything special. We did a few little things. We went grocery shopping, which she loves. We hung out and did "Momma cuddles", a big favorite.

I am far from back to normal, but I am functioning nicely. I still have a terrible cough. It sounds like Smudge did when I brought him home as a puppy. I was thinking I must have kennel cough. I know people can't get it but it sure sounds like it. I also still have GI issues, neuropathy and mouth sores. But, I am 1000% better. Its amazing how it happens. When its bad I know I will be better but I can't wrap my head around it. Then when I feel better I am thrilled. I am very blessed to be out of that darkness.

Tuesday, January 26, 2010

Work

Working today wasn't really too bad. It was pretty passive since I just sat in the classroom all day. I still have a pretty bad cough and GI disturbances. I did have to leave the room a lot because of both of these. I did make it through the day though. I have noticed that I am starting to feel so much better each day. I love it! I do hate that I will go back into the "chemo hole" three more times. I am currently enjoying that the side effects are slowly starting to alleviate.

I have had three chemo treatments now. Each time I have been overwhelmed by it and each time I have been amazed when I start to feel better. I guess I know on an intellectual level that it will get better but it is hard to believe when I am feeling so bad. I feel like the physical equivalent of a manic depressive.

Yippie!!! Things are getting better!

Hair loss, Cr. Citron, Work

I lost a lot of hair yesterday. I would say under 5% but it still seemed like a lot to me. No one would ever notice. I still have a lot of hair. It was just distressing to see it come out. I was told I would still have some loss. I am so glad I have the vast majority of my hair.

I went to see Dr. Citron. (oncologist) He asked me how I was feeling and what side effects I was having. I told him I had facial twitching, bloody nose, loss of sensation in hands/feet, headaches, nausea, diarrhea, muscle and joint pain, extreme taste changes, mouth sores, rash, heartburn and fatigue. He said they were all chemo side effects. He said that taxotere, carboplatin and herceptin is a particularly difficult chemo regimen. I feel like I am doing terribly with this. He said the fact that I didn't have to be hospitalized yet or need a blood transfusion puts me ahead of a lot of patients on these drugs. He looked at my blood counts. Every single one is below normal. He said that that is to be expected after chemo but they should start coming up on their own now. He said they should be close to normal before the next chemo treatment in two weeks.

Dr. Citron offered me the option of lowering the chemo dose and doing it for a longer period of time. He said it is an option, but that it is ill advised because any cancer cells that haven't been killed at the high dose will likely survive multiple hits with low dose chemotherapy. Obviously I am not going to take this option. What is the point of doing it if it is unlikely to work? If I was going to quit doing it (and I would love to) I wouldn't do the low dose. On a bright note, my herceptin has been changed from every week to every three weeks. That was the original plan, every week at first and then every three weeks for a year. So, it will now be every three weeks. Yippie!

I am going back to work today. I wouldn't because I do not feel well at all, but I do not have a choice. I have to attend my NY State paramedic refresher. I will be in the classroom from 7 am to 5 pm today through Friday and then next week Monday through Thursday. It is required to maintain my paramedic certification. My certification expires February 28th. It is a big deal if it lapses.

I know I will start feeling better in the next few days. It has taken about 10 days after each chemo treatment.

Thanks everyone for the help and support.

Sunday, January 24, 2010

Chilling

Julianna is taking a nap. She is still sick but she is doing a lot better. My cough is getting a little better. I am still suffering the chemo side effects. I am having a great deal of difficulty eating. The chemo kills appetite. It also makes everything taste weird. It causes most things to taste like metal. It also makes things taste extremely salty. I like salt, but I am having trouble eating foods that are even a little salty. It usually gets a little better about 10 days after the chemo. It hasn't yet returned to completely normal between the chemos, but it does get better. I have found I can eat milk cholcolate and that tastes almost normal. Dark is bad, mettalic. I also can drink milk and its not so bad. The taste changes are a known side effect of the carboplatin.

I have not lost any weight from this. Go figure! I don't eat more than a few bites for a whole week. When I go to the doctor and they weigh me I am the same. How can this be?? I said the same thing after surgery. They cut off parts. I didn't eat for a week and I weighed the same in the end. I go to the doctor tomorrow so I will see if I lost anything.

I am going to go back to work Tuesday morning at 7 am. I am hoping I am feeling ok by then. It is for my paramedic refresher, required by NY state, so there is no flexibility in the date.

Good luck to the NY Jets. My Aunt Joan and Uncle Mort should make them win!!!!!

Thursday, January 21, 2010

Sick

The lung infection turned into a raging inferno. Julianna is sick too. She has an upper respiratory tract infection. I took her to the doctor yesterday. She seems ok but is on augmentin and tylenol. My babysitter Christine took her today even though she was sick. Thank God! There was no way I could have done much for her today.

I am chilling on my couch. I thought about going to the oncologist but I am scared that he might admit me to the hospital. I have to do the neupagen shot tonight. I am hoping it will increase my counts so I can get rid of this infection.

I can't wait until spring when chemo will be over!!

Tuesday, January 19, 2010

Chest X-ray

I had my chest x-ray today. The reason for this is that I have an unexplained dry cough. It can be nothing, pneumonitis caused by the herceptin, or the cancer could have spread to my lungs. Obviously the last scenario had been weighing heavily on my mind.

I had the prescription for the x-ray. The nurse practitioner wrote "STAT" on it, also scary. When I got there they took me in pretty quickly. They did two views. When I was finished in the radiology office I went upstairs to the oncology office.

The nurse practitioner said she would go down to radiology herself to find out the results. I waited awhile. When she came back she said there was nothing visible on the x-ray. They think it is an opportunistic viral infection of the lung. Yippie!!!!! I have never been so happy to have a lung infection.

I try my best not to let negative thoughts invade my head. I must admit it was very difficult this last week. I realize that the cancer being in my lungs would mean I would not be here to see my daughter's third birthday. It was overwhelming to me to even entertain these thoughts, but harder to make them go away.

I am so happy about the outcome of this x-ray!!!!!!

Thank-you everyone for your prayers, positive thoughts and words of encouragement. They mean more than you will ever know.

Monday, January 18, 2010

Pictures Chemo #3

Vanna trying on a cap!
The nurse giving me a shot of ativan through the port,

Ativan is good!!


Vanna keeping track of the order we are using the caps.




The cooler full of dry ice and cold caps.




Everything to drink, Hydrate, hydrate, hydrate





Colleen wearing a cold cap.





Colleen shocked at the temperature even though hers was pretty warm.








Chemo #3

Today was my third chemo. It was a bit tough, but I got through it. So far my only side effects are heartburn and difficulty with balance. I know there are a lot more to come.

Before we started they drew blood and said the counts were ok to proceed. I advised the nurses that I have a cough. It started shortly after my last herceptin treatment. Of course the first place I go is "Oh no, its in my lungs". I know it is not likely but it is hard not to think that way. I have since researched and found out that pneuminitis is a side effect of herceptin. My chemo office agrees and they are sending my for a chest xray tomorrow to rule this out.

The cold caps went well. My friend Vanna came with my and expertly handled the whole operation. Before she got to my house to go with me I had gone to Roosevelt to get the dry ice. The guy who runs the ice place also runs a food bank out of his building. He feeds over 100 families in the area. I brought a bunch of stuff to donate.

The office also advised me that they had another patient who was going to start the caps on Thursday. I am happy that more people are finding out about them. I spoke to her online and she is happy about having the opportunity to save her hair.

We finished the chemo at 5:18. That means I need to have the caps on until 8:18. Vanna had to go home and take care of her daughter Summer so my friend Colleen came over to help with the rest of the caps. Vanna showed her how to do the first one. After that Colleen handled it like a pro, all by herself. At 8:18 I was finished with the caps. It was nice to get the cold and the weight off my head.

Julianna is going to stay the night over at the O'Brien's house. This is nice because I can take a much needed sleeping pill. The decadron keeps me awake all night so I need something to counter it.

So, I am halfway there!!!!!! 3 chemos down, 3 to go!!!

Saturday, January 16, 2010

Florida

Julianna and I are home from our Florida trip. We visited with my dad and Betty and Julianna was spoiled rotten. We went to the zoo, fed the ducks and went out to a lot of lunches. I am preparing for chemo on Monday.
We had a nice time and she was a very good girl on the plane ride home. It is a bit tough traveling with a two year old when kind of tired, but I am very glad we made the trip.
Picking oranges with Grandma and Pop-Pop.
Birthday celebration!


On the train at the zoo.


Tuesday, January 12, 2010

Herceptin, Blood Counts. Florida

I had my herceptin infusion yesterday. They also checked my blood counts. Everything in the blood counts were normal except eosinophils, which were pretty low. Even though everything in the blood counts were normal, they just made it into range. If something was normal at 12-20, I was 12.1. It was that way throughout the whole report. That does explain some things to me because I do get tired very easily. I guess the fact that my red blood cells are just on the normal side explains why. They say its ok though. I have no restrictions. I can even fly. So I will.

Julianna and I are going to Florida today to visit Pop-Pop and Grandma Betty. I wanted to go for her birthday but I was not feeling that great. I started feeling better and checked the prices at Jetblue. It was $74 one way and $89 the other. My Dad and Betty said they wanted to buy us the tickets and that was awesome. I am not sure when I would get the chance again so its now or never. I am going to go back to work at the end of the month. I am out of sick time and they are currently using my vacation time so I get paid. Soon that will be gone too so I have to try to work through the rest of the chemo. I will not be able to take any time off to go away for awhile.

I will be in Florida until Saturday. They don't have a computer and I am not bringing mine. I will post when we get back.

Saturday, January 9, 2010

Happy Birthday Aunt Carol


Happy Birthday to my Aunt Carol!! I hope you enjoyed your day!

Friday, January 8, 2010

Happy Second Birthday Julianna!!!

You only live twice. Once when you are born and once when you look death in the face.Ian Fleming


Today is Julianna's second birthday. I can't believe she is two already! She is awesome and the light of my life. I think back to the day she was born and I am thankful that we both survived it. Despite the bumpy road that fighting breast cancer has been, I have not been anywhere near as sick as I was just before and just after Julianna's birth. Even with four surgeries in rapid succession I have not had any pain as severe as the pain I had when my liver was failing and the capsule was stretching almost to rupture. This all pales in comparison.

Pre-eclampsia is Greek for "before the lightning". It comes on as rapidly as lightning and can be just as deadly. I had kidney, liver and heart failure. I had cerebral edema, loss of vision, uncontrollable hypertension, DIC, hemorrhaging and extreme hyperreflexia. The pre-eclampsia was about as bad as it can be and it progressed to class 1 HELLP syndrome. I was what we say in the ambulance world, CTD (circling the drain).

It took a year for me to get pregnant with Julianna. I had every type of fertility treatment available. The odds were overwhelmingly against me having her. She was a determined little fighter from the very beginning. She is nothing short of a miracle and a complete gift from God.

I was trying to have another. I went to a specialist who said I could do it, but my odds of it all happening again were 40%. She said she would never let it get to the point it did with Julianna and she would deliver immediately if there were any sign of a problem. She said the biggest issue could be a baby with extreme prematurity. I tried for almost a year and got pregnant once but that ended with an early miscarriage. I had to stop trying when I was diagnosed with the breast cancer.

I often wonder if the breast cancer was God's way of saying, "Do not do this again. It will not end well".


It is amazing how having a child changes you. Everything now is, "How will this effect my child?" When I found out about the breast cancer it was all about her too. I need to be here for her. What is her risk? Could she, God forbid, be the fourth generation to get this? What can I do to get this over with as quickly as possible so we can go on to have our lives back?

People ask me all the time if it is harder fighting this with her in my life. No, of course not. Everyday she gives me energy and purpose. She fills my heart with joy.

Happy Birthday to my little miracle!!!!!!!!!!

Julianna in the NICU under the bilirubin lights. 3 pounds 8 ounces.
Julianna the day she came home from the hospital. She was four pounds.


Julianna at Christmas. You've come a long way baby!!

Thursday, January 7, 2010

Side Effects Subsiding

I was pretty sick with the chemo side effects and fatigue. I am feeling so much better today. I am pretty amazed by the body's ability to bounce back. I still have some things, mouth sores, bad taste and some GI distress. However, it is SO much better, especially the fatigue.

I had an appointment with the plastic surgeon today for an expander fill. It is not too bad. In the beginning every time I went I was in excruciating pain for a week, now it is a minor annoyance. I think it has healed so much in there that it is not a big deal. In the beginning I had just had three surgeries to the area in a brief period of time so the fills were bad.

Two chemos down, four to go. Thanks for the support!!!!!

Wednesday, January 6, 2010

Hair Care

I am happy to say my hair is still here. There is a special amount of hair care involved when using the Penguin Cold Caps. You can only wash your hair twice a week. At first that was really tough for me but since the chemo is so drying it has been ok. When I do wash it I can only use cold water and only baby shampoo. Cold water is tough so I fill the tub up with hot water and use the cold water on my head while the hot water my body is in is keeping me warm. Its an odd process but I am happy to comply. I have not lost more than a few strands so far. Yippie!!!

The other side effects are finally subsiding a little bit. I am getting a bit more energy. I still have some GI issues but they are really not as bad as they were.

Thanks everyone for the constant support!!!

Monday, January 4, 2010

Happy Birthday!

Happy Birthday to my cousin Rosemary!
I hope you had an awesome day!!!

Herceptin, Blood Counts

I had my appointment with Dr. Citron (oncologist) today. He said a good way to combat fatigue is to exercise. Interesting since I have had trouble going from the couch to the bathroom the last few days. I will try though.

My blood counts are down, although not enough for a transfusion. That is good. He said they should start coming up on their own now. He said I have no restrictions and could even fly if I want to. All good.

The staff is amazed that I still have my hair. I am thrilled.

I had my herceptin infusion. The herceptin is in there now fighting any bad cells that may remain. Kick butt herceptin!

This was a tough week but I survived it! Thanks to everyone for all the help and good wishes!!!!!!!!!!