Hey everyone, sorry for such a huge delay between posts. I am getting ready for my fifth chemo treatment on Friday and looking forward to my follow-up scans that are scheduled for 11/24 (MRI on my heart) and 12/1 (CT Scans/Full Body Scans) and will get my results on 12/2. I am really anxious about getting these results, but I am confident that the chemo is working and I am praying every day I will be on the operating table in early December. I have to be one of the few people in the world right now actually hoping for open-heart surgery in the near future.
I have to admit I am starting to feel like I am sick, something I didn't start feeling until after the fourth treatment. I am fatigued all the time and on top of that I don't sleep well, which probably makes it worse. The nice thing is, I can deal with fatigue…it’s the nausea that I have been worried about and so far it has been VERY minor and only happening for 2-3 days a week, which is tolerable. I think the drugs they give me for that are working very, very well. On top of that I have a lot of joint and muscle pain that were expected and another thing I can live with. I have read about people who have either reacted much worse to this type of chemo OR who are on a much more harsh type of chemo and I am relieved that I have not had to experience that yet. Even if I do, it's a means to get better, so I will take it in stride. Also, I thought I was being all smart by shaving my head and so far I have yet to lose my hair. I keep wondering why, and thinking to myself that if my hair isn't falling out the chemo isn't working. I have been assured by a bunch of people (including one of my doctors!) that there is no relationship between hair loss and successful chemo so I am not that worried about it….but I do wonder about it. Shana thinks it thinning, but I can't tell as it's so short now anyway. It's still funny when I see people that I haven't seen in a long time. They are always surprised that I don't look "sick". I am going to start having fun with that soon (Halloween make-up is all on sale now).
I found a great resource for Sarcoma (The Sarcoma Alliance Discussion Board) and it has allowed me to connect with some others who are around my age and going through something similar. It is helpful for me to chat with people who have gone through this and gives me a good idea of what to expect. I still haven't found anyone with Cardiac Angiosarcoma, and probably won't, but in exchanging emails with others I have found many similarities in the treatments and expectations for others who have been diagnosed with this type of cancer. It's been very helpful to hear from them and learn about what I should expect (not good to leave that to imagination I am learning) and about how others have dealt with it.
I swear I will update this more often and I still appreciate all the great support I have received. I am still doing great and still amped up to fight this. The more I meet and talk to survivors, the more I know that my attitude about this will go a long way towards the outcome. I have no control over this from a physical standpoint…I can leave that to god and the doctors, but I have 100% control over my reaction and attitude and I believe that's carries a lot of weight as well.