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.