July 13, 2010 (Tuesday)by Sheri Nocelli on 06/14/13
I can't believe that time is flying as fast as it is. Summer is cooking this year (heat wise and time wise!). I had my appointment with my oncologist yesterday, and he was able to check my blood work results while I was still in the office, and everything looked great from white cells to hemoglobin levels... phew! This was a nerve wracking "in between time" because it was the first time that I didn't have to go get blood work done every two weeks and was moved to monthly. It's nice to not have to drive the early morning trek an hour to north Jersey all the time, but on the flip side, it's really scary not knowing what my counts are for a 4 week span. Turns out too, my doctor told me I don't have to come back for 6 weeks. Lucien and I are happy that I'm doing so well of course, but are scared to not have me checked for that long of time as well.
Of course, next week will be a massive milestone for me. Next Thursday, July 22 2010, I will be officially 2 years post-transplant. Along with this comes all these "two year tests" because of my clinical trial I did during Chemotherapy sessions. So yesterday they did an in office EKG and I have to schedule a MUGA Scan (a heart scan). I dread Muga scans, mainly because they inject a radioactive dye right into your blood stream. The rest is a breeze, it's just lying under a huge machine while across the room, you can watch your heart beating on a screen. For me it's the nerves with the needle, and the fact of the dye being radioactive that I can't stand the thought of. I have to schedule that test, and hopefully it will be fast and quasi-painless.
A few weeks ago, we also found out a really upsetting fact. We're not sure how it affects me or if it doesn't affect me, but either way it's unsettling news. The clinical trial I took part in during Chemotherapy included a new drug called Mylotarg (gemtuzumab ozogamicin) which was given as an injection in patient. I remember getting that one too, because it was given via IV push (where the head nurse administers it directly into your IV line, instead of the normal "drip" treatments). It was a drug being tested on patients with AML Acute Myeloid Leukemia. Well, a few weeks ago, the company who makes the drug Mylotarg voluntarily pulled it off the market because it was showing to cause more harm than good with the patient’s heart and lungs even though it was showing promising results as far as attacking the cancer cells. So, of course yesterday I forgot to ask my Oncologist if this is something I should be concerned about or if this doesn't affect me. Either way - it's not a great thing to have this in the back of my mind that the drug was pulled off the market so quickly and voluntarily too. We'll see what this brings.
It's exciting that summer is here, and my step sons Lucien and Justen are here for over a month to visit. This is when summer really kicks in full blast and we can just swim and play Wii nonstop : ) Well, and work too, but at least there's more fun involved! We had a blast (literately) on the 4th of July setting off small fire works in the back yard and we've also been to Sesame Place as well to enjoy some fun in the sun (which I got reprimanded for by my doctor.. oops!).
I also put a call into my transplant coordinator at the Cancer Center this afternoon to see how to start the process of finding out who my donor is. This is exciting but I'm so nervous too!! I hope they want to meet me, because we both have to sign release forms and had to wait 2 years for this opportunity to know who each other is. I know my donor was a woman in North America, so who knows, maybe we could even meet!!!! I want to thank her for everything she's given me in my second chance at life, and show her pictures of my kids and my family, and everything that's she's allowed me to have the chance to do in my life. I can't wait to thank her for her generosity, and extend our family to her... after all, we are blood relatives now!