October 19, 2010 (Tuesday)by Sheri Nocelli on 06/14/13
What a whirlwind life has been since I last touched base in July! So much has gone on, and life has whisked me into the express lane so much, that it was difficult to exit off and take care of things, like updating the blog! So, I have so many updates, both good and not-so-sure-yet too.
I'll start with the "eh" updates I think to get them out of the way and keep it real. I'll start with the "eye" issue updates. The doctor in Edison turned out to be great. He listens to what I'm telling him, and also was willing to work with my oncologist on a treatment which is what I was hoping for. He started me on Restasis drops to help my eyes with tear production. I tried that for 2 weeks, twice a day and really it didn't help, and my vision got a little worse in that time frame. I went back, and he started me on another medicine called Bacitracin Ointment which is a gel like substance (almost looks like Neosporin) which has to be applied under the eye lid twice a day. It makes your vision VERY blurry, almost like you're looking through wax paper. This lasts 15 minutes or so, and then starts to dissipate. This ointment has helped me with a lot of the pain and has allowed me to get through the day with a lot more comfort. Unfortunately, the eye doctor seems to think this is not the "end all" cure for me (and upon my research, the Bacitracin isn't something you want to stay on for a prolonged period of time or it will cause new problems) and he has another plan. Plugs! Ah! He wants to insert Punctal Plugs in my tear ducts, which will supposedly stop the tears and moisture from draining. Great. This is planned for next week, and I'm less than thrilled. He wants to place temporary Plugs in the ducts which will disintegrate a week later. If they help, then he wants me to come in and get permanent acrylic ones inserted. Now, by permanent, you would think that meant forever. Naw, of course not. He said if you rub your eyes too hard, or pick at the corners, you could dislodge the plug and have to go back into the office to have it put back in. I am really not sure how all this is supposed to take place, seeing as though I can barely sit still for a regular eye exam. We shall see!
In August, while at Target buying school shoes for the kids, Lucien noticed a brown splotchy area on my shoulder. Well, needless to say, that completely crushed my Target shopping fix! I checked it out in the mirror and it looked dark brown, and shiny, almost like little scars. I'm always the first to make excuses, so I noted the fact that this spot lands exactly where I wear my purse straps.. hmm? So I showed it to my oncologist at my appointment in August. He said right away that he doesn't like the look if it, especially because the area is slightly raised, so he set me up to make an appointment with the dermatology department of the hospital. They made me an appointment for December or something crazy like that. So I figured it was probably just a routine checkup and nothing more. WELL, two days later I get a call from the Dermatologist office saying "Your Oncologist found out that your appointment was in three months, and said that was unacceptable. He'd like you to come in sooner. How's tomorrow with the head doctor?" (Okay, this was an alarming change of pace! Oh my God this can't be good!). So I went in the next day and after an hour of scrutinizing my various markings, they told me they wanted to schedule biopsies in two areas. One on my shoulder, and another one under my arm. AHH! Me + needles don't mix. It's my greatest fear in the whole world and this is no exaggeration. So I went in last Wednesday for the procedure. Needless to say, I was a complete nervous mess, so I took two and a half Ativan before arriving (do not try this at home, the regular dose is one!). The doctor who did the biopsy was great and fast, and a really sweet nurse held my hand and talked me through it. The Ativan helped so much, because I only cried the whole time (that's pretty good for me, usually there's a lot more drama with needles). So anyway, the interesting thing is that they didn't biopsy the first spot I was talking about, they did one under my left arm near the elbow, and another under the left arm right near the arm pit. The most interesting thing is that the spot under the arm pit has an identical marking under my other arm, so that makes me not so worried. I have the feeling that it could be some graft vs. host disease rearing its head again, and I just don't think that it's skin cancer... (This is my gut feeling anyway). So now I have stitches, which will get removed next Monday the 25th. The results of the biopsies are disheartening – the two location samples they tested show “thickened bundles of collagen aligned parallel to the skin surface are crowded in the reticular dermis” – AKA – I have Morphea Scleroderma. This is a thickening of the skin which can cause major complications over time, including scarring because the production of collagen becomes unregulated and out of hand, therefore abnormal causing excess collagen to be deposited in various organs and/or tissues of the body. This is something that we will just have to watch over time to see how it progresses.
We shall see. Oh and to add to the joy of my appointments on the 25th, I also have a regular checkup with my Oncologist that day where I'll be getting my MMR shot (since I'm 2 years old now), as well as the Chicken Pox Immunization as well. (Yes, expect more tears and drama from me!).
But you know what? I have some exciting news, which I know a lot of you have been asking me about since I've reached my 2 year milestone. The day after the two year mark, I sent in my "consent" form to find out who my donor was. A few weeks later, I got the letter in the mail I was waiting for, which introduced me to Kerry, my donor. On the form I was given her name, age, city and state, email address and phone number. It was so amazing to put a name behind my donor, and immediately I was on the phone calling my mom to tell her the news! My husband’s first reaction was, "Wow, she's from Colorado? Maybe you inherited a skiing ability!" Well, I doubt that. Hahaha! After settling down from my excitement for about an hour, I knew I needed to contact her as soon as possible to "meet" her and thank her. I decided to call her instead of email, because I didn't really feel that thanking someone for my life through email was enough and I'm so happy I called. She's so sweet and kind and it was the best feeling in the world to get to know the person whose blood has allowed me to live my life. It's been wonderful getting to know her more and more, chatting through email and Facebook, and I'm looking forward to keeping in touch with her for many years to come and really, I've thought about it, and I think the best way to continue to thank her for her amazing gift to me and my family, is to enjoy life to the max, and life every minute to the fullest.