Saturday, February 14, 2009

Feburary 15th Update

Hope everyone had a nice Valentines day…I know we did (and so did the Orange!). Shana and I have been treating every day (almost) like Valentines Day since my diagnosis, so it really wasn’t a lot different than any other day, but still…we had a nice day.

I received an email this week from a woman named Sandra who found my blog while searching for information on Cardiac Angiosarcoma. As many of you know, I have been trying to find and connect with someone else with this specific cancer since my diagnosis and haven't been able to find anyone (though I have met some amazing and inspiring people with other types of cancer and even some others with other types of Angiosarcoma). Sandra's son, Ruben, was diagnosed with Cardiac Angiosarcoma just after his 16th birthday and he is now in remission at age 18. It's safe to say Ruben is an inspiration to me as he fought and survived Cardiac Angiosarcoma just like I plan on doing. I posted a link to his website under the "Links" section on the right of the blog (you need to register to view his site).

I have been emailing back and forth with Sandra all week and though I find it tragic that such a young man has had to endure what Ruben has, and wish he didn't have to, I have really enjoyed sharing experiences with his mom. It's very therapeutic to talk to, and learn from others who have been through this, especially when you know it’s the exact same thing. She told me that she has also been searching for someone with this diagnosis and in almost three years, I am the first she has been able to find. That's not a surprise to me though and I am very thankful that Sandra found me. I am sure, as long as it's OK with her, I will post more about Ruben as I learn more about what he went through.

On to how I am doing…I know I mentioned in my last post that I may have to skip a treatment because I was sick with bronchitis, but I didn't . My blood counts just made it (they have cutoffs for some of the things they measure) and I was able to get my treatment. I had chemo #16 this past Friday and each week it hits me a little harder and I feel a little sicker, but I still just go about my life telling myself that this is what I need to do to get better…and I am still doing better than most people who get chemo, and I am very thankful for that. I just wish I didn't need 10-12 hours of sleep sometimes to actually function during the day! I am meeting with the Radiologist on Wednesday to discuss the radiation regimen that they want to start and will post about that when I know more. I am kind of looking forward to it because I just feel like radiation will be progress, and get me a little closer to being where I want to be with this. They also tell me the radiation will help with the pain that I am feeling in my ribs and back, which would be nice.

Since it's Valentines day (or was yesterday) I just want to take a second to thank my two valentines…Shana and my mom. I love you both so much and I appreciate everything you do for me. Thank you and Happy Valentines Day!

9 comments:

Sandi Cooley said...

Will - I think about you all the time and am sending good karma your way. Stay strong!

john wells jr. said...

Hey will, it's John Jr. susans brother, just stopping in and saying (a late happy v-day). Good Luck in the present and future with everything.

Anonymous said...

Will,

What a story. I'm so happy that you have found this connection and that it is good news--remission. My heart goes out to that family as well. Reading your blog this time gave me goosebumps, but good ones! FYI-don't feel bad about sometimes needing 10-12 hrs of sleep to function. My husband needs that on a daily basis and there is nothing wrong with him other than being lazy!

So glad that you are keeping this blog up and I will continue to send good thoughts your way!

Stacy Spaziani

Kerry McCone said...

Will - Just wanted to drop in to say that I am still thinking of you and following your story. I am more inspired every time I read it and to make it even more impactful, I just discovered last month that one of my very best friends has cancer. They found it when she at her 8 month prenatal visit. She starts chemo this week. Her baby is doing great and is 3 weeks old. I am going to share your blog with her. I know it will inspire her like it does to me. Take care.

Lizzy said...

Hey Will - I am so glad you found someone to connect with. How did the radiation appt go???

liz said...

love you..keeping the faith and praying everyday!! cant wait for our vacation in a few weeks!! WILL POWER<3! stay strong and keep up the fight..u are my hero! love u
<3sis

Elizabeth said...

Hey Will,

Looks like you know a lot of Elizabeths, Lizs or Lizzies. Glad to be amongst them.

So glad to hear you have found some one who really understands exactly what you are going through - and Ruben's story is inspiring!

Take care, and keep us posted. There are many more folks reading your blog than you probably suspect.

Elizabeth from the iSchool

Karen Wilson said...

Hey Will, I think it's wonderful you found someone who can relate to what you are experiencing. I'm so glad I get to work with you:)

Take care,

Karen

Anonymous said...

awesome blog, do you have twitter or facebook? i will bookmark this page thanks. lina holzbauer