Tuesday, December 29, 2009

No News Does Not Always Equal Good News

Christmas Eve at my dad and stepmom's house.
Hey everyone,

I know, it has been a while since I have last blogged. A lot has happened and we have been dealing with a lot.

I went to the hospital once again. This time I had a small infected spot on my skin by my port in my arm. When there is infection by a port you always have to be EXTRA careful. So, Kevin and I went to the emergency room on Monday night (December 21st). They gave me IV antibiotics and wanted to admit me overnight. I did not want to stay and really wanted to get some sleep, so I signed out against their recommendation and went home...at 4 in the morning. The next day I had an appointment with my oncologist, who in turn wanted me to go right back to the hospital and get admitted for a couple days. I was pretty devastated because this would keep me in the hospital until Christmas Eve.

I did stay there until Christmas Eve and was finally let out in time to get to Christmas at my dad's only 1 hour late. On Christmas day I had to go to a clinic and get IV antibiotics for an hour in between Kevin's family and my mother's Christmas dinner. They had me go to the clinic daily for a week until they completely confirmed that I didn't have a blood infection.

I got some tests and results. Overall my CT scan was improved. Liver tumors shrunk, more cancer cells are dead, but there were new spots in lymph nodes. My doctor thought I got the best response from the chemo, Gemzar (the stuff that sent me to the hospital with the fluid around my lungs). We decided to add the Gemzar to the chemo I already do (Carboplatin) despite the fact that I will develop fluid around my lungs. I take steroids for 2 days and then just tolerate it the rest of the time. I do have fluid around my lungs, but as long as I can breathe and am not in major pain, we just deal with it.

When I got chemo I was anemic pretty bad (low red blood count). So, the day after I had to get another blood transfusion, this time getting two units of blood.

Honestly, this chemo is kicking my ass. No need to sugar coat it. I feel horrible all the time. I have had a headache non stop since I got chemo. I never sleep because I am still waking up drenched in sweat multiple times each night. Sleep medicine is not working. My body aches. I was really nauseous before and actually throwing up, but since I stopped taking Oxycotin for pain, that has gone away. I have no energy after getting no sleep and sweating all night. I am still really skinny. 120lbs now and that's with me eating like crazy trying to not loose any more weight.

Today I went for a checkup and found out that my platelets might be extremely low. (It could be a mistake, they are re-testing and I'm waiting to hear from Beaumont) Either way, they already have me scheduled for a transfusion of platelets for tomorrow. I'm supposed to stay basically on bed rest and to not do anything in case I happen to bump or cut myself. If I start bleeding at all tonight (like from brushing my teeth), I'd be at risk of bleeding to death and have to go to the ER. 150 - 350 is the normal range for platelets and mine came back at 11. I never had this before. My platelets have always stayed in the normal range through ALL the chemo I have ever done, so I am half expecting this to come back as a mistake. I'll let you all know.

All and all, I have just been depressed. Not like this freaking cold gray weather that has no end in sight is helping my cause. I just want one 60 degree sunny day so I can open all my windows and take a short walk outside and breathe some fresh air. Uncle David doesn't know it yet, but he is getting a call soon because I need to go somewhere sunny and warm right now before I slip into a state of depression I have never seen. Some nice 70 degree LA weather might be just what I need. I'm sure my doctor would tell me to stay home, but I realize my need for a change. All I do is sit around my house. If I leave the house, I get so darn tired I race back home to lay on the couch. I am so SICK of my house. I'm SICK of my bed. I'm SICK of the smell of freshly washed sheets. I'm SICK of watching TV, but honestly, it's all I have the energy to do.

So I don't blog forever and all I do is complain. Sorry. Kind of why I haven't blogged. I usually only like to write when I have something good to say. I'll let you all know about the platelets and think of something positive to say soon. Maybe I'll have a flight booked soon and I can blog all about the sun and fresh air breezing in from Venice Beach.

Penguin Cap update - I still have all of my hair. There is no thinning at all even with the two chemos combined. I'm thinking these things really work. I have noticed my hair has a little less life in it, but otherwise it's just awesome to have hair still. I'll keep you all posted on how the penguin caps go.

Tuesday, December 1, 2009

Penguin Caps - Hopefully Keeping My Hair

Christmas tree and lights are up. Yankee Candles smelling like mistletoe are burning and I am ready for the holidays. Chloe too. She loves sleeping under the tree. (and chewing on the branches)

Well, it's been a nice few weeks away from the hospital. It's also been a while since I had chemo. I love this every three weeks schedule. While I've been out of the hospital I have felt much better, but there's always been some issue every day. I kept having the sweats bad every night for a while. I also was loosing so much weight I was at risk of wasting away. Even my skinny jeans that I almost gave away because I never thought I would fit in them again, were big on me. I spoke to doctors about it and they basically explained to me that my body is running a marathon. The cancer is making my body work so hard, plus I have the fevers at night and sweat for 8 hours that my metabolism is going crazy. Luckily though, the sweats have slowed down. Last night I barely sweat. My weight has remained steady which is very relieving when before I was loosing at least 2 pounds a day.

I've once in a while had bad liver pain. A couple days ago I was having bad bone pain where I have tumors. Kevin and I keep telling ourselves the pain is because the chemo is fighting the tumors. I do still have fluid in my lungs. The doctor said another 2 liters, but was comfortable waiting to see if it gets any worse since I'm not in major pain and can breathe good enough. The chemo causes this fluid to build up and I guess until the chemo gets removed from your body the fluid will keep being there. I guess they just keep tapping people until the fluid stops building up. I'd like to just deal with it and wait for it to go away. I would really rather not be tapped. I'll let you know what we see.

So, what I wanted to tell you all about is the Penguin Caps I am using. These were invented by some guy in England. They are these caps with some white stuff in them, and they get frozen REALLY cold. You put them on your head 1 hour before chemo, all during chemo and 3 hours after. You keep your hair follicles frozen and it prevents the chemo from getting to them and causing your hair to fall out. A lady bought them and used them at Beaumont right around when I was first diagnosed in 2005. They worked and Dr. Margolis became a believer and got a freezer for Beaumont. They did a clinical trial and saw they were effective a lot, so now they let you use them. You have to pay for them, but if I keep my hair it's worth it.

Okay, I do not sit in the chemo chair with a penguin on my head. My dad thought it would be cute to put this stuffed animal of my sister's on my head via his photoshop skills.
You have to switch out the first three caps every 20 minutes and then the rest are every 30 minutes. When you first put them on it hurts because it's so cold. Luckily, I've always liked ice and cold things on my head. By the end I am freezing and I'm bundled up in blankets. I go through 13 caps and I'm there all day. The one thing that does suck, is when I am done with chemo, I am ready to GO, but I have to stay an extra 3 hours with caps on my head.

My dad usually goes with me. I get IV Adivan with my chemo, so I'm really sleepy and I pass out every cap we do. Usually by the time I fall asleep, it's time to change the caps. You have to have someone with you to put the caps on for you. So, you have to bring someone who is willing to stay all day. The first time we did the caps we were the first people in and the last people out of Beaumont. That was when I did Gemzar and Cisplatin. At least my new Chemo, Carboplatin is a lot quicker..

I got Gemzar twice with no caps, but that only has a 20% chance of making you loose your hair. Then I added Cisplatin to the Gemzar and we did the caps. Cisplatin is one of the chemos that is like a 95% chance of loosing your hair. Carboplatin (which I use now), I think has a high chance of making you loose my hair too (I didn't look it up). So far so good. I keep tugging on my hair, but nothing comes out. I would be so excited if this works. I know two people who used them and kept their hair through chemo that usually for sure makes people's hair fall out. My doctor seems to think they are working.

Last thing, I am having a Jewelry Party this Sunday, December 13th at my house. It will be open house style from 12 noon to 5pm. I'm selling necklaces, bracelets, earrings, bookmarks, and wine glass charms. I'll have food and drinks. My prices range from $10 to $30. I accept cash and checks. Please email me if you are interested and need my address. iezzzi@hotmail.com.

Okay, that's all the updates I have. Even though I am having some issues every day, I am still so happy to not be as bad as I was in the hospital.


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