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!

February 5th Update

I just wanted to say hello and give everyone who’s still checking an update on what’s been going on, which isn’t much really! I have been sick the last few days with bronchitis, which has been rough, but I think it’s starting to get better. I am hoping it won’t stop me from getting chemo #15 tomorrow, but I will see when I get there.

I have been feeling the effects of the chemo more often lately, but it’s still overall pretty mild compared to my expectations and what I have heard from others. I am having some nausea and joint pains, which are well controlled with medication and like always just feel fatigued mostly all the time. There is still a lot of pain and stuff going on in my chest/abdomen, but I am getting used to that, in fact it almost feels strange when I don’t get it. It’s hard to believe it’s been 16 weeks since my diagnosis – it feels like it’s been 16 months and this has certainly become a way of life for us.

A couple of weeks ago we met with a radiologist and they are considering doing some radiation therapy during my next break from chemo (my one week break that would occur at the end of this month). The radiologist was waiting for some images/scans to arrive from my last round in Boston before making a recommendation – I am hoping to find out about that soon. It sounds like they are unsure whether or not it’s needed at this point. Since we found out about how major the surgery on my vertebrae would be, and they’d like to avoid it if possible, radiation becomes the only option for treating that area. The amount of radiation they can use on that area (like any) is limited, so they are unsure if they want to treat it now or wait until (if ever) that spot starts growing/spreading. They would use a radiation technology called cyberknife on that spot. It’s robotic and seems pretty cool.

At the end of this month I will have another set of CT scans done (during my week off of chemo) just to make sure nothing has changed before having six more treatments taking me to the end of April.