It's been 7 months since my surgery and I have become interested in the longevity in the people who attend the Brain Tumor Support Group. It is lead by a gal who is 13 yrs out from her initial diagnosis of brain cancer. So, I thought it was time we went to the Brain Tumor Support Group meeting at St Joseph's Hospital. There were a variety of people there with a variety of diagnoses with a variety of neurological issues. Lanette had just returned from a conference in Florida relating to brain tumor research.
They were very friendly and open. There were a few newcomers in addition to my husband and me. It seems to be a large group (over 100 people) from what everyone said, but a smaller one that night (about 40). I heard alot of different diagnosis- not all cancer, but still all needing surgery and/or treatment of some kind.
We broke up into 2 groups- pt and caregivers. We talked about survivorship and what that meant to us. Lanette had given me a information package to take with me. In it was some information on survivorship. It was written by a Dr who was stricken with cancer and his process towards living with it. I am somewhere inbetween the acute and extended phases. Still seeing the Dr monthly and getting MRI's every 2 months. Responding to treatment, but living with the uncertainty of recurrence. (Still in the initial window of the prognosis of 6-15 months).
Tracy's group talked about the symptoms and what lead to the diagnosis of their loved one.
Overall, he was impressed with the support and wants to go back to the meetings.
I am filled with gratitude that I have the abililty to continue to work and function in a "normal" capacity.
Emily at the Dream Foundation has been in touch with me. She has booked my flights to Boston to see my kids and grandaughter, Marisa in March. I told her that I was in the process of making a quilt, and asked her for something with a Dream Foundation logo. She is sending a tee shirt along in my package to be added to the quilt!! She is also sending a package to Marisa as the recipient of my dream. So far, I am very impressed with them!
Saturday, January 30, 2010
Sunday, January 17, 2010
Udate on MRI
Monday 1/11 10, I had another MRI and went to the Dr on the 13th. Noticeable difference between the Nov one and the Jan one. The Jan one was smaller. Great news!! I start another cycle of chemo on Mon to Fri next week. I decided to go to the Brain Tumor Support Group meetings this month. It's the 4th Tues. of each month. I can find out from the other people who are going what else is going on in the world of brain tumors and see how they are doing as well. I feel like I've been living in a cocoon up to now, but I'm ready to start spreading my wings and giving back!! I looked on the web site and signed up as a brain buddie. It will be 7 months at the end of Jan that I will be living with this diagnosis. There are people there who are 10+ yrs survivors of glioblastoma brain tumors. I'm hoping to be one of them!!!
Sunday, January 10, 2010
Dream Foundation
I found out this week that my Dream Foundation application has been accepted! They will be paying for my airfare to see Marisa. All I need to do is book a flight, and they will pay for the airfare.
If anyone has any airline miles they are willing to donate, they are always willing to accept them. www.dream foundation.org
If anyone has any airline miles they are willing to donate, they are always willing to accept them. www.dream foundation.org
Sunday, January 3, 2010
What a Christmas!!!
My 2 daughters, Erin and Lindsay, her husband Michael, their daughter Marisa and my former husband Tom and his wife Teri were all here for the long weekend. The East coast bunch all came in on Thurs afternoon and Tom and Teri arrived Fri morning from UT. Thurs nite, after we got home from the airport, there was Tracy's famous chili in the crockpot. We sat down to enjoy that. Had some good conversation. I showed them my quilt that I had started.
I was up early with Marisa. She was in her usual pleasant morning mood. Keeping herself busy after her morning bottle. Toys all over the floor, TV on to Blue's clues, and she was buzzing around totally enjoying herself. She is babbling away. She had some breakfast. Banana and cheerios. I tried the oatmeal. She didn't go for that.
Later that morning, we were expecting Tom and Teri to arrive around 9 am. He called Erin on her cell phone. I had left a message on his that Tracy would be there to pick him up and to call his number and let him know which curb he was on. Well, wouldn't you know, my cell was in the car. I missed his call. That's why he called Erin. So I called Tracy, and he had hooked up with him by then!! The best laid plans!! So they finally got there. We did our Christmas presents. Of course, Marisa went first. She got a bunch of toys, clothes and books and the Swarovski ornament (collection)I started for her last year.
The girls were very thoughtful this year. They had a bunch of pictures made up into a frame and Lindsay wrote a poem about Martha's Vineyard and their weekends and/or vacations there.
That chapter closed in the fall. Last party there was Teri's 50th birthday party.
For me, they got a Pandora bracelet with 5 charms. Each one had a significance. Birthstones- peridot and tourmaline, angel, murano glass and a mother of pearl heart ball. It is beautiful!! For Tracy, they got an Ipod. Something he probably would never have gotten for himself, but totally is enjoying!! He downloads music on to it each night after he gets home from work.
I had gotten Lindsay a love knot to put on her's. I had been getting emotional about giving it to her. Who knew they would be thinking along the same vein!! Like mother like daughter's. We all really like jewelry. I bought Erin a silver beaded necklace. She has the bracelet from Tiffany's she got from Lindsay as a gift from being her Maid of Honor. It sort of matchs that. Simple elegance.
So, I cooked up some breakfast and off to the park we went went with Marisa to the swings.
She LOVES to swing. She tried some of the other equipment too. Grandpa was introducing Marisa to the slide. (Michael was watching but not saying anything) She was having so much fun. Walking up the slide, then turning around and going down the corkscrew type slide. There was another one there she liked too. (Marisa tends to be fearless, so she doesn't recognize the consequences.) Michael wants her to learn the consequences of her actions. (like walking in front of the swings when someone is on them)
We hung out there for awhile and had a bunch of fun with her. Took some pictures of everyone.
I made chicken parmesan and ravioli for Christmas dinner. A little too much multitasking for me!! Teri jumped in to help. She enjoys being in the kitchen.
At dinner, I offered my thanks to everyone for coming this year and for all their thoughts and prayers and how I was overwhelmed at the support I have had from my family and friends. This indeed was another thing on my bucket list.
After dinner, I wanted to see the lights at the Mesa Mormon Temple. We had been in Mesa for 3 Christmas' and still hadn't made the effort to see the lights at Christmas. So we drove the few blocks over to see the lights. They were spectacular! It was like being at DisneyWorld. There was a Christmas concert going on as well. People were milling around enjoying the atmosphere.
We got back to the house and had dessert and some more wine. Tom and Teri took Tracy's car to the Travel lodge where they were staying. They would be back the next day.
Saturday, we decided to go to the bead store in Tempe after breakfast. Marisa was still napping, and it wasn't a place for her to be. So, we would meet up with them to exchange the slippers I had gotten Michael at Dillards. At the Mall, there was a Carousel we wanted to have Marisa go on. Tom had already purchased the tokens by the time we got there. She wasn't sure about it at first. Then it started to move. She had a bit of a panic look about her, but was doing ok. We weren't sure if it was because she was with Grandpa, or because it was something new. So she tried it with her Daddy, and had the same reaction. Oh well!
Then, we were hungry again, so we went to find some food. Found a Souper Salad and had lunch there. Soup was good.
I put a pork butt in the crock pot and it was smelling awesome by the time we got home. Just needed put the rest together.
It was a big hit!! Everyone enjoyed it. We got the photos albums and loose pictures out. The kids and Tom enjoyed them. Brought back some good memories.
Sunday, we went to the Phoenix Zoo. Saw some awesome animals. I love the giraffes. There were 4 there this time. They amaze me.
Tracy took Tom and Teri to the airport and I went with Erin, Lindsay and Michael and Marisa on a little tour. We did the road up on Camelback to see the view and the houses up there, and then looked for some ice cream. We wanted a milk shake. Found an ice cream shop in Scottsdale. Headed home after that.
Sunday night, Erin hooked up with her friend Claudette in Glendale and we went out for pizza. (Probably not the best idea). Sunday night, the packing started to get ready for the trip home the next day.
I spent all the early mornings with Marisa playing with her until Mom or Dad got up. It was such a delight. Lindsay and Michael had gotten us recordable photo frame that is motion sensitive. She captured one of Marisa's audio's when she was playing. I comes on everytime the kitchen light goes out. It's like she's still here!! I love it.
Mon morning, we dropped them off at the airport and said our goodbyes for now. I will be back for a visit in the spring.
That following Wed., I had a huge let down and cried on and off all day. It was horrible.
My plan is to see Marisa at least quarterly this year, now that she is getting older.
My 2 daughters, Erin and Lindsay, her husband Michael, their daughter Marisa and my former husband Tom and his wife Teri were all here for the long weekend. The East coast bunch all came in on Thurs afternoon and Tom and Teri arrived Fri morning from UT. Thurs nite, after we got home from the airport, there was Tracy's famous chili in the crockpot. We sat down to enjoy that. Had some good conversation. I showed them my quilt that I had started.
I was up early with Marisa. She was in her usual pleasant morning mood. Keeping herself busy after her morning bottle. Toys all over the floor, TV on to Blue's clues, and she was buzzing around totally enjoying herself. She is babbling away. She had some breakfast. Banana and cheerios. I tried the oatmeal. She didn't go for that.
Later that morning, we were expecting Tom and Teri to arrive around 9 am. He called Erin on her cell phone. I had left a message on his that Tracy would be there to pick him up and to call his number and let him know which curb he was on. Well, wouldn't you know, my cell was in the car. I missed his call. That's why he called Erin. So I called Tracy, and he had hooked up with him by then!! The best laid plans!! So they finally got there. We did our Christmas presents. Of course, Marisa went first. She got a bunch of toys, clothes and books and the Swarovski ornament (collection)I started for her last year.
The girls were very thoughtful this year. They had a bunch of pictures made up into a frame and Lindsay wrote a poem about Martha's Vineyard and their weekends and/or vacations there.
That chapter closed in the fall. Last party there was Teri's 50th birthday party.
For me, they got a Pandora bracelet with 5 charms. Each one had a significance. Birthstones- peridot and tourmaline, angel, murano glass and a mother of pearl heart ball. It is beautiful!! For Tracy, they got an Ipod. Something he probably would never have gotten for himself, but totally is enjoying!! He downloads music on to it each night after he gets home from work.
I had gotten Lindsay a love knot to put on her's. I had been getting emotional about giving it to her. Who knew they would be thinking along the same vein!! Like mother like daughter's. We all really like jewelry. I bought Erin a silver beaded necklace. She has the bracelet from Tiffany's she got from Lindsay as a gift from being her Maid of Honor. It sort of matchs that. Simple elegance.
So, I cooked up some breakfast and off to the park we went went with Marisa to the swings.
She LOVES to swing. She tried some of the other equipment too. Grandpa was introducing Marisa to the slide. (Michael was watching but not saying anything) She was having so much fun. Walking up the slide, then turning around and going down the corkscrew type slide. There was another one there she liked too. (Marisa tends to be fearless, so she doesn't recognize the consequences.) Michael wants her to learn the consequences of her actions. (like walking in front of the swings when someone is on them)
We hung out there for awhile and had a bunch of fun with her. Took some pictures of everyone.
I made chicken parmesan and ravioli for Christmas dinner. A little too much multitasking for me!! Teri jumped in to help. She enjoys being in the kitchen.
At dinner, I offered my thanks to everyone for coming this year and for all their thoughts and prayers and how I was overwhelmed at the support I have had from my family and friends. This indeed was another thing on my bucket list.
After dinner, I wanted to see the lights at the Mesa Mormon Temple. We had been in Mesa for 3 Christmas' and still hadn't made the effort to see the lights at Christmas. So we drove the few blocks over to see the lights. They were spectacular! It was like being at DisneyWorld. There was a Christmas concert going on as well. People were milling around enjoying the atmosphere.
We got back to the house and had dessert and some more wine. Tom and Teri took Tracy's car to the Travel lodge where they were staying. They would be back the next day.
Saturday, we decided to go to the bead store in Tempe after breakfast. Marisa was still napping, and it wasn't a place for her to be. So, we would meet up with them to exchange the slippers I had gotten Michael at Dillards. At the Mall, there was a Carousel we wanted to have Marisa go on. Tom had already purchased the tokens by the time we got there. She wasn't sure about it at first. Then it started to move. She had a bit of a panic look about her, but was doing ok. We weren't sure if it was because she was with Grandpa, or because it was something new. So she tried it with her Daddy, and had the same reaction. Oh well!
Then, we were hungry again, so we went to find some food. Found a Souper Salad and had lunch there. Soup was good.
I put a pork butt in the crock pot and it was smelling awesome by the time we got home. Just needed put the rest together.
It was a big hit!! Everyone enjoyed it. We got the photos albums and loose pictures out. The kids and Tom enjoyed them. Brought back some good memories.
Sunday, we went to the Phoenix Zoo. Saw some awesome animals. I love the giraffes. There were 4 there this time. They amaze me.
Tracy took Tom and Teri to the airport and I went with Erin, Lindsay and Michael and Marisa on a little tour. We did the road up on Camelback to see the view and the houses up there, and then looked for some ice cream. We wanted a milk shake. Found an ice cream shop in Scottsdale. Headed home after that.
Sunday night, Erin hooked up with her friend Claudette in Glendale and we went out for pizza. (Probably not the best idea). Sunday night, the packing started to get ready for the trip home the next day.
I spent all the early mornings with Marisa playing with her until Mom or Dad got up. It was such a delight. Lindsay and Michael had gotten us recordable photo frame that is motion sensitive. She captured one of Marisa's audio's when she was playing. I comes on everytime the kitchen light goes out. It's like she's still here!! I love it.
Mon morning, we dropped them off at the airport and said our goodbyes for now. I will be back for a visit in the spring.
That following Wed., I had a huge let down and cried on and off all day. It was horrible.
My plan is to see Marisa at least quarterly this year, now that she is getting older.
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