Hope everyone is having a WONDERFUL holiday season and you all got what you wanted for Christmas.
Friday, 12/22 was the last radiation treatment. They gave me two weeks off and then we're going to start chemotherapy. My hip and back are feeling much better, I can already tell the radiation did some good. Since I've been on serious pain medication for 2 months, I'm going through withdrawls trying to get off of them. It's like I have the flu. They ran tests on my tumor and it doesn't look like the Gleevec is working, they told me to stop taking it. Too bad, if it would have worked, I could have substituted it for the traditional chemo. Gleevec is the new type of chemo that just targets the bad cells and doesn't have all the bad side effects like hair loss.
They are going to do another PET scan in two weeks to see which tumors are growing and then the doctors will figure out the type of chemo to put me on.
I appreciate all the emails, cards, and positive thoughts. Thank you so much.
Kelly
Tuesday, December 26, 2006
Thursday, December 14, 2006
Dec 14
It's hard to believe it's been a week since we posted. Time flys when you're not having fun. The last week is a blur. I cannot believe Marla is leaving tomorrow. She's been great. Now I will have to remind David to feed me, I'll probably lose more weight and certainly won't take my pills on time. Lord help me. Char will be hear on the 19th, hopefully I survive until then.
I cannot explain how nauseous I have been. The radiation doctor didn't think his radiation should be causing it, so he did a Cat Scan and found out I have edema (swelling of the brain) from the gamma procedure I had last May. the swelling is in a place that tells my brain that it's time to throw up, so I am constantly nauseous, mostly with dry heaves. It's not like when you are sick with the flu and feel better after you throw up, you feel like throwing up ALL the time. It really sucks. He's putting me on steroids which is supposed to reduce the swelling. He also gave me marijuana pills to help with the nausea. I'll let you know if they make me high :) I know the steroids are going to make me fat :( I'll take fat if they can stop the vomitting.
I am getting better even though I feel worse. I'm walking better and don't hurt all the time. I even reduced my pain medication from 100 mcg/hr to 50 mcg/hr.
Thanks to everyone for all the emails and cards, they really brighten my day.
I cannot explain how nauseous I have been. The radiation doctor didn't think his radiation should be causing it, so he did a Cat Scan and found out I have edema (swelling of the brain) from the gamma procedure I had last May. the swelling is in a place that tells my brain that it's time to throw up, so I am constantly nauseous, mostly with dry heaves. It's not like when you are sick with the flu and feel better after you throw up, you feel like throwing up ALL the time. It really sucks. He's putting me on steroids which is supposed to reduce the swelling. He also gave me marijuana pills to help with the nausea. I'll let you know if they make me high :) I know the steroids are going to make me fat :( I'll take fat if they can stop the vomitting.
I am getting better even though I feel worse. I'm walking better and don't hurt all the time. I even reduced my pain medication from 100 mcg/hr to 50 mcg/hr.
Thanks to everyone for all the emails and cards, they really brighten my day.
Friday, December 8, 2006
Dec 8th
Kelly is half way through her radiation treatments. Her back and hip are feeling better but the radiation is really putting a strain on her body. It is kicking her ass. She's a tough woman and will come through this but right now she's is pretty much miserable. Her sister, Marla, was kind enough to put together a guide for everyone visiting and I want to share it with the rest of you: Kelly’s Rules of Engagement
Thank you for helping Kelly in her fight against Cancer. There may be a battle lost here and there on some days but the war WILL be WON! So, with that said, please be sure you are familiar with the rules of engagement. Thank you again for enlisting!
Ø Give her all medications on time and chart all actions such as weight, bowel movement and vomiting!
Ø Keeping her weight up is important! Weight loss will slow healing & recovery, worsen fatigue & increase negative side effects. Treat food like medication!
Ø Offer food every hour and chart her progress. Don’t worry about how much she eats just focus on her eating often. 2-3 bites every hour is a victory!
Ø Focus on offering high calorie protein based food. Avoid junk food since nutrition is the weapon of choice here.
Ø Offer liquids between meals not with meals. Always give her a straw as it is difficult for her to swallow without one right now. The goal is ½ gallon of fluids daily.
Ø Help Kelly relax. If she feels anxious or sick, open the doors, remind her to sit up, not lie down, help her to take deep breaths in through her nose and blow out through her mouth. These things have a proven track record for her.
Ø Talk to her…..not at her. Don’t tell her what you think she should be doing or how to do it unless it is a part of the approved battle plan that she MUST follow! Push when necessary otherwise stand back and support her.
Ø Encourage Kelly to get up and move everyday! Take a short walk around the backyard with her. Walk through the house. Moving around every few hours for 10 – 15 minutes will promote healing.
Ø If she does get sick, help her in the bathroom by holding her hair back and gently rubbing her back for her. Make sure the bathroom window is open for air. Hand her tissue when she is done. Don’t talk just silently pray over her. That is the BEST gift you can give her!
As you can see, Marla is truly a gift from God. With everyone's prayers, Kelly will get through this. Any encouraging or humorus emails are appreciated. She enjoys reading them.
Thank you for helping Kelly in her fight against Cancer. There may be a battle lost here and there on some days but the war WILL be WON! So, with that said, please be sure you are familiar with the rules of engagement. Thank you again for enlisting!
Ø Give her all medications on time and chart all actions such as weight, bowel movement and vomiting!
Ø Keeping her weight up is important! Weight loss will slow healing & recovery, worsen fatigue & increase negative side effects. Treat food like medication!
Ø Offer food every hour and chart her progress. Don’t worry about how much she eats just focus on her eating often. 2-3 bites every hour is a victory!
Ø Focus on offering high calorie protein based food. Avoid junk food since nutrition is the weapon of choice here.
Ø Offer liquids between meals not with meals. Always give her a straw as it is difficult for her to swallow without one right now. The goal is ½ gallon of fluids daily.
Ø Help Kelly relax. If she feels anxious or sick, open the doors, remind her to sit up, not lie down, help her to take deep breaths in through her nose and blow out through her mouth. These things have a proven track record for her.
Ø Talk to her…..not at her. Don’t tell her what you think she should be doing or how to do it unless it is a part of the approved battle plan that she MUST follow! Push when necessary otherwise stand back and support her.
Ø Encourage Kelly to get up and move everyday! Take a short walk around the backyard with her. Walk through the house. Moving around every few hours for 10 – 15 minutes will promote healing.
Ø If she does get sick, help her in the bathroom by holding her hair back and gently rubbing her back for her. Make sure the bathroom window is open for air. Hand her tissue when she is done. Don’t talk just silently pray over her. That is the BEST gift you can give her!
As you can see, Marla is truly a gift from God. With everyone's prayers, Kelly will get through this. Any encouraging or humorus emails are appreciated. She enjoys reading them.
Thank You.
David
Saturday, December 2, 2006
Dec 2nd
Today was a tough day. It was barf day. After two days of being able to keep my food down, things came north. My night nurse, David, didn't give me nausea pills this morning, so it pretty much ruined my day. Do I have to do everything :)? I had just taken a call from Judy and all of a sudden I had to go throw up, I couldn't even finish the telephone call.
I pretty much slept all day between the bathroom visits and I know it's just going to get worse before it gets better. I am very tired, very tired.
KC is one of the few things that gives me pleasure now. She's my bed buddy. She can sleep 23 hours a day, pretty much like me now.
We got our tree last Thursday and I still cannot get David to hang the lights so Marla and I can decorate it. He spent the day washing his bike instead of working on the tree. At least he has his priorities straight:)
That's all for today. Hopefully tomorrow is a much better day.
Good Night.
I pretty much slept all day between the bathroom visits and I know it's just going to get worse before it gets better. I am very tired, very tired.
KC is one of the few things that gives me pleasure now. She's my bed buddy. She can sleep 23 hours a day, pretty much like me now.
We got our tree last Thursday and I still cannot get David to hang the lights so Marla and I can decorate it. He spent the day washing his bike instead of working on the tree. At least he has his priorities straight:)
That's all for today. Hopefully tomorrow is a much better day.
Good Night.
Friday, December 1, 2006
Dec 1st Update
I'm 8 treatments into my 22 radiation treatments. The last two days have been better, they are the first that I haven't thrown up in a long time. Marla is taking good care of me. It's very hard to swallow, since two of the tumors they are radiating are in my throat. It feels like a pill is stuck in there and will not go down. The sides of my neck are turning red, kind of like a sunburn. There is not a lot to report on, since I spend most of the day in bed or lying around watching TV. Speaking of TV, Dish Network cancelled our ABC channel, something about a lawsuit with the cable companies. Monterey doesn't have a local ABC channel and we were getting it from Los Angeles. Now I can't watch Good Morning America, Grey's Anatomy, Boston Legal, All My Children and all the other shows on ABC. When we called Dish, they tell us we have a contract that allows them to change programming, end of story. Pretty good customer service, huh? I'm organizing a boycott of Dish now. Everyone should cancel to show support. Seriously, they win the worst customer service award for this year. We are looking into Direct TV now and will probably switch next week. That is the most exciting thing going on with me right now. Marla and I put up the tree yesterday (I paid someone to deliver it). Theresa and Gina are coming up to decorate. I can't wait, I need some Christmas spirit around here. Oh, KC came home. She's an inside cat again.
Today we found out that David has skin cancer. (When it rains it pours.) A malignent Basal Cell skin cancer. He's going to have the rest of the spot removed next week. Hopefully, they found it early enough and this will be the end of it.
Take care. When something worth reporting happens I'll update everyone.
Good Night.
Today we found out that David has skin cancer. (When it rains it pours.) A malignent Basal Cell skin cancer. He's going to have the rest of the spot removed next week. Hopefully, they found it early enough and this will be the end of it.
Take care. When something worth reporting happens I'll update everyone.
Good Night.
Thursday, November 23, 2006
David's Update
Kelly is very tired, so I thought I would fill in for her. She started radiation therapy last Monday and has had three treatments so far. The first day was really tough, she spent over 2 hours on the table and wasn't very comfortable. The radiation is causing her to be very nauseous and she's throwing up. The doctor prescribed new medication to help her, but it's not working too well.
The positive side is that she already thinks the radiation is working. I thought it was too soon, but the doctor at UC San Francisco said she could easily feel something after two or three treatments. She's got 19 to go.
The doctor at UC San Francisco was something else. He looked and acted kind of like the nutty professor. It would have been funny if he wasn't dealing with somehting so serious. He left the consultation twice to go look something up on the internet. I'm thinking it was "Meningnoma's for Dummies!". The end result is that Kelly cannot start chemo while she's going to radiation, her body would be too susceptible to infection.
He prescribed a new medicene that might work on her other tumors while they are radiating the hip and upper spine/neck. Of course, when I went to get the prescription filled, Blue Cross wouldn't fill it without the doctor filling out more paperwork. It costs $3,000 a month for this new medicene. Maybe we should try and get it from Canada. As we were leaving UC SF, we asked the doctor if he thought the medicene would work and to quote him: "I don't think so, but we'll try it anyway." He needs work on his bed side manner to say the least.
We had a good Thanksgiving today. Marla made an awesome meal. We're stuffed and laying in bed watching Ugly Betty. It's time for us to go to sleep. I hope everyone had a good day today.
The positive side is that she already thinks the radiation is working. I thought it was too soon, but the doctor at UC San Francisco said she could easily feel something after two or three treatments. She's got 19 to go.
The doctor at UC San Francisco was something else. He looked and acted kind of like the nutty professor. It would have been funny if he wasn't dealing with somehting so serious. He left the consultation twice to go look something up on the internet. I'm thinking it was "Meningnoma's for Dummies!". The end result is that Kelly cannot start chemo while she's going to radiation, her body would be too susceptible to infection.
He prescribed a new medicene that might work on her other tumors while they are radiating the hip and upper spine/neck. Of course, when I went to get the prescription filled, Blue Cross wouldn't fill it without the doctor filling out more paperwork. It costs $3,000 a month for this new medicene. Maybe we should try and get it from Canada. As we were leaving UC SF, we asked the doctor if he thought the medicene would work and to quote him: "I don't think so, but we'll try it anyway." He needs work on his bed side manner to say the least.
We had a good Thanksgiving today. Marla made an awesome meal. We're stuffed and laying in bed watching Ugly Betty. It's time for us to go to sleep. I hope everyone had a good day today.
Friday, November 17, 2006
First Post
Hello everyone,
In response to every one's calls and emails I want to provide a communication medium that everyone can check at any time, and also, it gives me the chance to write when I feel up to it. The cancer and associated pain medication make it hard for me to talk on the telephone. Now, when I'm feeling good, I will update the blog and we will all know what's going on.
As may of you know, I've been diagnosed with a malignant meninginoma, which is very rare. So rare it took the doctors about a month to diagnose it and confirm their diagnoses. The radiologist went to UC San Francisco where they have an entire department focused on it, and he has never seen a malignant meninginoma that has metastasized. We met with an oncologist radiologist yesterday and he gave us some very encouraging news. Even though I have numerous tumors, none of them are currently threatening vital organs. He is going to start radiation treatment on the two in my cervical spine and the one in my hip. They need to start here because they are afraid that the tumors have eaten away enough bone mass to put me at risk of fracture. The radiation treatments will be approximately 30 minutes long and will go on for 22 days.
We are going to see a specialist at the University of San Francisco the Wednesday before Thanksgiving. This is to discuss our options for chemotherapy.
I am in good spirits. I will post again when I learn anything new.
Thanks again for all your cards, emails and calls. I really appreciate your thoughts and prayers which has helped keep my spirits high (along with the pain medication :)
I want to wish all of you and your families a very happy and healthy Thanksgiving.
Kelly
In response to every one's calls and emails I want to provide a communication medium that everyone can check at any time, and also, it gives me the chance to write when I feel up to it. The cancer and associated pain medication make it hard for me to talk on the telephone. Now, when I'm feeling good, I will update the blog and we will all know what's going on.
As may of you know, I've been diagnosed with a malignant meninginoma, which is very rare. So rare it took the doctors about a month to diagnose it and confirm their diagnoses. The radiologist went to UC San Francisco where they have an entire department focused on it, and he has never seen a malignant meninginoma that has metastasized. We met with an oncologist radiologist yesterday and he gave us some very encouraging news. Even though I have numerous tumors, none of them are currently threatening vital organs. He is going to start radiation treatment on the two in my cervical spine and the one in my hip. They need to start here because they are afraid that the tumors have eaten away enough bone mass to put me at risk of fracture. The radiation treatments will be approximately 30 minutes long and will go on for 22 days.
We are going to see a specialist at the University of San Francisco the Wednesday before Thanksgiving. This is to discuss our options for chemotherapy.
I am in good spirits. I will post again when I learn anything new.
Thanks again for all your cards, emails and calls. I really appreciate your thoughts and prayers which has helped keep my spirits high (along with the pain medication :)
I want to wish all of you and your families a very happy and healthy Thanksgiving.
Kelly
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