August 16, 2009 (Sunday)

by Sheri Nocelli on 06/14/13

I have only one excuse for not updating this page is so very long, and that is.... that I've been too busy living every second of this summer to the fullest. Against Doctors orders, I am tan, swimming constantly and enjoying the outdoors as much as possible, and it feels wonderful!

    July 22th was my one year anniversary of my Bone Marrow Transplant. I wanted to get on here and write an entry about "how far I've come" and this and that, but truthfully I was so busy, I just didn't! One year is a huge milestone; my doctors say it should be treated as another birthday. The nurses, my friends, my family, our clients, everyone congratulated me on my one year, it was really sweet, and I can't believe it's been that long since I've even been in the hospital! I am down to every other week as far as doctor visits, which is a nice break in between. But with the one year mark, all of this celebration comes with negative points I am dreading. I have had to go for many "one year tests" (and have more scheduled) from Bone Density Scans to check my bones to Pulmonary Function Tests (breathing tests to check my lungs functioning ability). I am supposed to start getting all of my immunizations again as of last month. Luckily, my doctor has postponed them since anything with needles is a very stressful event for me and things have been very stressful this month as it is, which he could see, so he told me not to worry about them, that we'll start the shots in the fall.

     Along with the one year, other problems have occurred, which is to be expected after what my body has gone through. I am officially post-menopausal at the ripe old age of 25. While this has been a nice little perk, other side effects come with this since my body doesn't make enough estrogen anymore, like now we are watching like hawks for Osteoporosis, and other problems most women don't worry about until they're in their 50s. At least the hot flashes are over! I haven't had one of them in about a month, so that's very nice since it's so warm now in August! I am having trouble with my knees, which I am going to have to make an appointment with an Orthopedic Specialist (I think that's what it is) and will probably need physical therapy. On top of that, while I am enjoying summer, I did suffer an injury in the pool (karma maybe since I'm not supposed to be swimming???), Adrian jumped on my back, and his bony little knee hit my tailbone full force resulting in either a sprained or broken tailbone (not sure on those results just yet!) - It’s painful though!!  I'm taking this as a sign of brittle bones and preparing myself for the worst as far as that bone density test goes (I'll get the results on Monday).

     About a month ago, I also tested positive for a virus called CMV or Cytomegalovirus. It's a common virus that infects most people at some time during their lives but rarely causes obvious illness. CMV infection can become dormant for a while and may reactivate at a later time. In normal people with normal immune systems, this is no big deal really, but for me, with a weak immune system can quickly turn into chickenpox, infectious mononucleosis or other serious things like that. It was a fiasco getting the medication for that, an anti-viral medication that my horrible insurance wouldn't cover. And I needed them, because otherwise this virus could turn into something more serious very quickly.

     Now on to the positives! Summer has been amazing. Last year when I was hospitalized for the whole summer, all I wanted was one thing. To sit in the backyard with my family and watch the kids play. That's all I wanted, and this year, I'm doing it as much as I can! We had my step sons, Lucien and Justen for the entire month of July. It was a lot of fun, we swam a lot, played X Box on rainy days, went to Dorbrook park a few mornings which was fun. We ate a lot, played a lot and just had a lot of fun. In June (right in the middle of the whole CMV diagnosis, I even went up to New Hampshire for a few days for my brother Scotts High School Graduation (this was highly against doctors’ orders as well, and I was lectured that I had to call and come to the hospital in North Jersey at the very first sign of fever or infection).  It was a wonderful little visit to see my family and cheer on Scott on his big day!

     Last week was Adrian’s 6th birthday party, I can't believe my little boy is growing up! He had a Beatles birthday with a Yellow Submarine cake. He got Beatles sheets for his bed and Beatles pictures for his room that his brother Lucien made for him, and a cool guitar backpack for 1st grade! He had a great time, and asked me immediately when was his 7th birthday going to be.

    Yesterday we went up to Staten Island because Lucien had a Beatlemania show. It was right on the beach, which was great, I was so happy to have a chance to get near the ocean! It's literately been years. We had a lot of extra time to soak in the ocean, check out the street fairs all along the board walk and just hang around. It was awesome to hang out with the cast and crew, they're always the best group to be with. It's really the most fun and completely stress free group of people to be with, they're our extended family really.  It's always great to catch up with Alan and Jess, and of course Joe. He's great, just as crazy as Lucien and I with having Purell and Germ X available at all times.

     Life is moving so quickly again, almost as though this cancer never was here and never stole a year of my life. It's also a big part of who I am today, how I live my life, how I approach things I do and how I do them. It has made me soak in my world around me in a new view and with new appreciation. And through all this, is how I sometimes, for a minute, forget that it was ever running through my veins. How it was ready to claim my life, and instead has only made me stronger. I still worry sometimes, as I'm looking at my hands, or showering, or doing my makeup, if it could be secretly building inside me again, preparing for another battle, but then I stop and realize that that's part of its war plan is the scare tactic - so every time that thought comes to me, I quickly shake it off and move on with my day, because I've fought the battle before, and I'm not about to waste another minute not living my life.