I can take it....I think

This week has been a pretty stressful and shitty experience. I was contacted on Monday by my clinical trials nurse. She advised me that my cpk (creatine phosphokinase) levels were dangerously high again. My cpk levels were high last month, which resulted in me having to stop my medication and then restart on a lower dosage. So, I was advised to stop my medication again and that I had an appt with my DR to go over my options. Keep in mind, I was originally told that my drug, Gleevec, was my only treatment option.....so I was stressed and scared to say the least which resulted in about 10 hrs of sleep this week. My appt was for 9:10 AM this morning. We get there and we're told my DR was running an hour late.


At 11 something, my trials nurse comes out and gets Rosanna and I for the appt. We go into the examination room and its small talk. I was given a new set of consent forms to sign for the clinical trial I was on. I'm thinking no biggie.


This is a pic of me sitting back and thinking that this is going to be not as big of a deal as I thought.



BIG MISTAKE. My DR comes in. He sits close to me with my pretty thick file. He goes...your treatment is not working at a level as it should. Your cpk levels are too high, which can cause muscle damage which could lead to heart damage. He said the positive note is that, from the barrage of blood tests I did in January, that I'm basically in Hemostatic remission (the only good news I heard today from him). He tells me that he recommends a new drug for me to try....I mean brand new. So it doesn't even have a name. I would have to go through a number of tests again. Starting with a bone marrow biopsy....NOW.


This is me trying to stay positive while I await the DR to ram the bone marrow biopsy needle in.


Here's a pic of me laying on my back with my legs up to stop the bleeding from where the bone marrow was extracted. I have to lay like this for 15-20 minutes until I stop bleeding. Looks like I'm giving birth or something.


All joking aside, I'm scared all over again. I'll have to do a bunch of ECG tests, another MUGA, huge amounts of vials of blood & chest x-rays. All the heart monitoring scares me as well as the possible liver damage that I was advised of with this new drug.

I feel deflated. Like someone stuck a needle in me and all my positive thoughts and hopes have left me. I had a little "heart to heart" to my new trial nurse so she knows where I'm coming from and I think she gets it. I have to put a brave face on and tackle this as best as I can. I'm grateful that Rosanna took the day to go with me. All in all, we left at 1:40.

The only other good news I had was that I won $1089.90 on Sportselect, which I had to go to the lotto office to get a cheque for.