Monday, April 21, 2014

Michael

I better blog about this before I forget.

Saturday afternoon, I met up with a friend from college to see The Realistic Joneses on Broadway. The cast is incredible: Tracy Letts, Marisa Tomei, Toni Collette, and Michael C. Hall. If you follow my Facebook page for Team Gillybean, you'll know I posted a while ago that I became a big fan of the TV show Dexter shortly after I started my chemotherapy treatments and would often watch at night to keep my mind off of treatments/side effects/life. It wasn't until I was halfway through the series that I was told that Michael C. Hall (Dexter) had cancer during the filming, and I later found out it was Hodgkin's Lymphoma and that he was an ambassador for Light the Night in 2011. So, I really wanted to see the show so I could see Michael C. Hall perform live.

I don't know if anyone else has gone through an experience like this, but I immediately felt a weird
"connection" with the actor on a different level, knowing that not only did he go through cancer treatments, but he had the same cancer I had. As far as I knew, I had never seen him in any other shows (perhaps bits of Six Feet Under) and knew very little about him. I quickly found out that he survived Hodgkin's Lymphoma, accepted his Golden Globe wearing a cap because he lost his hair during chemotherapy, continued working on Dexter wearing a wig, and became a spokesperson for Light the Night/LLS.

After I finished Dexter the series, I realized he was appearing in NYC and I knew I wanted to see it. I had a crazy idea that I could meet him at the stage door and tell him how appreciative I was that he shared his personal experiences with cancer. In one interview I found online, he said he wanted to share because he thought it might help other people who were also dealing with the disease. I thought, 'why not?! It might be the one chance I'll ever get.'

So, my friend Chris and I met up on sunny Saturday afternoon. I was already very emotional, thinking I might meet Michael C. Hall (can I call him Michael for the rest of this post?), but even themes within the play hit close to home. I laughed, I cried.

My friend knew exactly where the stage door was (I would have never found it without him!), so we waited there with all the other fans. Eventually many more people made their way to the stage door (how do people know where these things are?!).

Michael.....C. Hall (okay, I can't do it without the C. Hall) was the first one out. Chris was nudging me to
get closer to the front and take out my playbill so he could sign, but I was wary of this. I never like being associated with other fans at stage doors, waving camera phones and playbills at the actors. I knew I wanted my talk with him to be special, but I didn't know if it was possible. Some actors are too busy/impatient/arrogant to even take pictures with fans, so I watched him to see if I could figure out what 'kind' of celebrity he was. He was signing autographs and taking pictures with every person (good sign!), but he didn't seem to really be smiling in the pictures (bad sign?), so I thought  'unfriendly/hates taking pictures/no way he will talk to me.'

When he made his way to my side, I waited for him to sign a few autographs, I briefly made eye contact with him, before I made my way to the front. Deep breath. Now was my time to be bold. He was holding a Sharpie pen in his right hand, ready to sign Playbills, but instead of handing him my Playbill, I offered my hand. So, yea, I shook his hand with the Sharpie in it. :-)

I don't remember how I started. I think (I hope...) I said "I admire your work" and very quickly told him "In September, I was diagnosed with Hodgkin's Lymphoma." He said "Oh, you were?" And I continued to tell him how Dexter was my go-to show after chemotherapy, that I didn't know he was also diagnosed with Hodgkin's Lymphoma until halfway through the series and when I found out, watching him on the show had so much more meaning. I told him I did some "Youtube stalking" (exact words, that much I know) and that it was great to watch his interviews and be able to relate to him; that the feelings he was going through are ones that I am going through and it meant everything that he shared his story.

It was mostly quiet all around us. Everyone was looking on and I knew this, but I didn't stop telling him how I felt. Chris told me after the experience, that he could tell that people surrounding us could tell we were having a special moment-- except for one random guy, who pushed his way to the front to take a "selfie" with Michael C. Hall. And that was the only time he ever looked away from me. I know the experience will be blurry to me soon, but the one thing I will not forget are his eyes. He did not look away and was completely engaged in what I was saying. You can tell a lot about a person by the way they look at you and how they listen.

At some point while I was talking, he leaned over the railing, and hugged me. Maybe he said something before that? I think it was a nice hug, but I was so shocked, I can hardly remember it two days later! (I'm shaking as I'm writing this post, by the way. Just thinking and writing about this experience makes me proud, nervous, emotional...shaky).

So clearly, I knew this actor was someone special, so I thought I would be bolder. I asked "can I give you a shirt?" He said yes/of course/yea/sure...one of those words...maybe? So I reached into my purse and took out a Team Gillybean shirt. I brought it along, just in case it ended up being a special experience, which it clearly was. I told him this was my team shirt from Light the Night and we won a contest for best t-shirt design in NJ. I pointed out the cancer ribbons on the jellybeans. I don't know if he responded to that, but I do remember he asked: "Are you Gilly?" I said yes, I'm Gillian. Then I guess I asked him if I could take a picture and I turned around and asked Chris to take the picture. I felt so weird smiling next to him, because I knew he wasn't really smiling in pictures with fans. I almost regretted asking for a picture with him, but ultimately, I'm glad I have it. I knew it was time for him to move on, so as he started making his way to more fans, I thanked him again for sharing his story and he....smiled? Said you're welcome? Said thank you?

It's amazing how I was so concentrated on what I was saying that I barely remember if he said anything back, but I won't forget his eyes.


Thank you Michael C. Hall for taking the time to listen. And thank YOU for reading. Now we all have to be on the lookout for a paparazzi photo of him wearing the Team Gillybean shirt! :-) And, please, please, consider donating if you have read to the end! My birthday is April 24th and I would love nothing more than to receive a donation to the LLS from you! 

With appreciation, 
Gillian

Saturday, April 12, 2014

12 of...?


I made it. Yesterday was 12 out of 12. Possibly 16. But hey, I made it! Everyone said six months would fly by and it sure did. On April 24th, I will get a CT/PET scan and find out the results and if I have to continue with 2 more cycles (4 treatments). I know for sure that I will be done by June and that is amazing.

Last night, my biggest fans were over and after a little nap we played Telestrations. So fun!


I have to bring up the hair loss again. Whether you lose your hair completely at the beginning, middle, or end of treatments, or even if you don't, I believe that the hair loss is one of the worst, if not the worst, side effect of chemotherapy (for women and I'm sure men, as well). It has been an interesting, stressful, annoying journey with my hair these past six months. Not a day has gone by that I don't think about my hair: losing it and seeing it all over my clothes and floors, "styling" it so I can cover the thinning areas, and not washing it often, hoping it will prevent it from falling more. If I have to continue treatments, I am uncertain it will stay. Uncertainty has been the worst part of this! But it's hanging on, I'm hanging in. It will all be okay.

Monday, April 7, 2014

April

I have really neglected this blog for almost a month! Sorry about that.

I've been busy with getting my survey thesis sent out-- to directors of choirs for people with aphasia!

This is my poster that will be displayed at the university's research days (April 30th) and at the NJ Speech and Hearing convention (May 1st). Since I've had the poster printed, I've received 8 more results, so that is exciting.


My own "aphasia choirs" are going well. We will be performing at the end of semester party May 12th and May 13th. I've joined a Google plus community with these choirs and it is exciting to be able to collaborate with people living in Australia!

I do still have my hair, although it is getting much thinner. My hairdresser/wig expert suggested using a keratin hair powder, which I've been using to cover up the thinning patches. It really does work. It is just annoying. The hair loss is annoying.

This is from a few weeks ago:

It's like magic. Also, it's magic that I have that much hair towards the end of my treatment. Strong hair roots, I guess. All my unwanted facial hair is still growing. What?!


Crossing fingers that my LAST TREATMENT will be THIS Friday, April 11th!! There is still a chance I have to continue for two more months and if that's the case...I will DEFINITELY be done by JUNE! YEA!

Thinking back to September/October and everyone told me the time would fly by-- well, it sure has. Thanks for taking this trip with me and supporting me the whole way.