My story on Sun-Sentinel!!!!
Last Sunday as Mikey and I were sailing the seas on the beautiful Oasis of the Seas my story hit the Sun-Sentinel local newspaper. I never imagined my story being covered by a newspaper let alone the local one. Shoot just getting Gary’s obituary to read in the Florida State Times that comes out a few times a year has been more of a mission than this! So I’ve added my story below, here’s a link to the actual online article: My Story
Pembroke Pines woman uses her blog to tell of her experiences as a young widow, single mom
By Chris Guanche, Forum Publishing Group
May 1, 2010
Samantha Zullo’s blog isn’t like most others.
Every new entry she posts offers information about cancer, or chronicles her experiences being a widow and single mother at age 30. Blogging served as an outlet for her and husband Gary Zullo to help deal with the rare T-cell lymphoma he’d been diagnosed with.
“The blog was like therapy,” said Zullo, of Pembroke Pines. “Gary could write how he felt.”
Samantha Zullo said the diagnosis came as a shock — her husband was in his early 30s, exercised and ate right, yet he was afflicted with a form of lymphoma normally found in people twice his age. The diagnosis came two days before the birth of their son, Michael.
Gary Zullo received chemotherapy treatment for his condition. That meant flying to Maryland and both of them being away from Michael. After several treatments, he returned to work as a software engineer and was taking Michael to day care in the morning. It all changed last Christmas, when he began to act delusional and was taken to the hospital with pneumonia and kidney failure. He died Jan. 1.
“It’s completely unreal, like a really bad nightmare, and I’m still waiting for someone to wake me up,” she said.
But even after her husband’s death, Samantha Zullo kept blogging. She recalls the frustration of looking for information or people to relate to. She would use the blog to help people in similar situations.
“I can’t help my husband anymore, but I can help others,” she said. “I know he would want me to do things to help others.”
In addition to blogging, Zullo donates blood and helped with a fundraiser for Weston’s Relay for Life cancer awareness event. The fundraiser started with a simple idea: 2-year-old Michael and his classmates at the Creative Child Learning Center in Sunrise decorated flags to sell at a silent auction.
“We wanted to do something for the family,” said Sarah Braisted, the center’s director. “When there’s a loss like that, there’s not much you can do to make someone feel better.”
Children decorated the flags with handprints or drew fish and other animals on them. The flags were displayed at the Relay for Life’s opening ceremony on April 24.
Because the effort was organized at the last minute, Zullo said she was expecting to raise about $250. Between the auction and other donations, the effort netted about $1,500.
“A lot of people are struggling with the economy, so to see donations coming in like that is incredible,” Zullo said.
As for the blogging, Zullo doesn’t intend to quit anytime soon. She said comments from strangers who can identify with being widowed or experiencing cancer have been helpful. Gary Zullo’s blog remains online, and he’d intended to write a “witty book” about his experience with cancer. Samantha Zullo intends to write that book for him, using material from his blog.
“I want to take something that was very negative and put a positive spin to it,” Zullo said. “Even if no one else reads it, it’s for me.”
One year anniversary
I’m not sure why it’s even worth noting, but it is my blog and I control what I write or don’t write…right? Well even though I’m on vacation with Mikey I can’t help but know what today signifies. Today is the one year anniversary of Gary getting his official diagnosis of Peripheral T-Cell Lymphoma. I remember this day last year like it was just yesterday. We knew the call was coming because Gary was playing phone tag with the doctor. Finally around 6pm when we were both home his cell rang and we both knew who it would be on the other line. I didn’t have to be listening in on the call to know that it wasn’t going well. I saw the look of concern overcome Gary’s face as he was told that not only he has a more aggressive type of cancer but that he’d need chemo asap. I heard the word chemo come out of Gary’s mouth and I felt this sinking feeling in my stomach. I could only imagine the feeling Gary was feeling at that very moment. If Gary would have known that less than a year later he wouldn’t be alive I just know that he wouldn’t have done the treatment. He would have totally had taken his chances with this lymphoma thing and would have seen how long his body would let him be here for. It’s just crazy to think of all of the things that transpired in this past year.
Help me Light the Night
I’m here sharing the link to my Light the Night fundraising page once again. This year my goal is to raise $1000 on my own. At last year’s walk one of Gary’s coworkers/friend (Gretchen) who is very active with the LLS had raised over $1k in a matter of a week. She got a fancy yellow shirt and a medal. Well she knew exactly what she was doing with the medal even before she received it. She was going to give it to Gary. Just so happens I was right there the moment she presented it to him, armed with my camera too.
Here’s the moment that to this day gives me chills all over my body:
After she gave him the medal I told Gary that at the next walk I’m going up on stage with my fancy shmancy yellow shirt and getting myself a medal. And now more than ever do I intend to meet that goal. Not for me, but for Gary.
So help me Light the Night and donate what you can, every little bit DOES help!
Thank you for your help and your support. With your help we will find a cure for Leukemia and Lymphoma!
Possibly AWESOME news
Last Tuesday before we came home from DC, Gary had his spinal fluid retested. According to the research nurse they usually hear something within a day. By Friday morning still no word, so no news is good news right? Well RIGHT. By Friday afternoon we found out that the pathologists were having such a hard time spotting lymphoma in his spinal fluid. It is still possible that there is very very very little in there but Gary is pretty damn close to being cancer free in his spinal fluid which is HUGE news. Yeah its only one specific part of his body but we’ll take whatever good news we can get at this point. Now we wait for his blood to be retested at the beginning of the next trip. Hopefully they’ll have just as difficult of a time finding lymphoma in that too. *Crossing fingers and toes*
The Low Point
This trip has been ROUGH for not only Gary but for me. It is VERY difficult to see your husband at his ultimate low point. I have seen him cry more times in just the last few days than I have in the last 10.5 years we’ve been together. Ok the only other time I’ve seen him cry was when our beloved pup, Mozart, passed away last year. That was rough, but man is this rougher. Yesterday morning like every other morning his doctors came in during rounds. I swear I want to take a picture of this soooo bad because its a HUGE group of doctors that cram into your tiny room. It’s very cool and very much like the TV shows you see. Well regardless they flat out said hey you ARE getting the Ommaya Reservoir put in and we will be talking to neurosurgery soon. Ok great, do that. Let’s get this ball rolling. Well a few hours later this short guy with a VERY thick sorta French accent walks in. He’s the neurosurgeon and he looks over Gary. Tells him he has to go down for an MRI, which we later find out ends up changing to a CT scan because he has to have continous chemo, and since he needs his pump the MRI won’t work. No biggie. He goes down for that and the doc comes in and says he’ll see him today (Tuesday) at 6:45am. So you go from you are getting it, possibly on Wednesday to you are getting it bright and early tomorrow morning!
When they first told us about this contraption last time it didn’t seem like it was a huge deal. But man after talking to the neurosurgeon it is a big deal. They have to not only make an incision on his scalp but drill a hole through his skull and work this catheter carefully through the ventricles of his brain to place it just right. This is permanent. There is NO taking it out. So Gary will forever have to tell people he has this contraption in his head for the rest of his life. If that’s not freaky I don’t know what is. Later last night, his wonderful nurse (they are ALL wonderful here) came in and talked to both of us about the contraption. It really helped put us at ease. When the docs come in here they are super frank about things to you. No sugar coating ANYTHING!!!! And seriously sometimes you just want a little dust of sugar to make it a tiny bit better. But she really helped put us as ease.
Thank you Dawn and Walter!!!
Soon after Gary got the official diagnosis of Peripheral T-Cell Lymphoma a good friend of mine, Christi, asked me when was the last time we had a professional family photo done. Ummmmm the last real one? When Mikey was a week old! The last not so professional one??? Probably one of our Disney photos. So she put the idea in my head and I ran with it. She thought it would be a good idea to get some family photos of the 3 of us before Gary started chemo and more importantly before Gary started looking like a cancer patient.
So I shot out some emails, one to a good friend of mine, Dawn. About a month or so before Dawn opened up her house to a bunch of girls and their kids. Ok I think there might have been a daddy or two 
She took some FABULOUS pictures of Mikey so I just had to ask her to see if there was any way she could fit us into her schedule. She was not only willing to do it but she was willing to do it the Saturday of Mother’s Day weekend. I wasn’t sure how soon NIH would want Gary back up in DC so I knew it had to be fast since we didn’t have many weekends to work with. So that Saturday Dawn and her fabulous husband, Walter, met us at a park near their home. We had a lot of fun taking photos with them. Totally not like our last outdoor photo session with our wedding photographer.
This morning she sent me a message saying that our pictures are done and that they are up on their website. I hopped on the link immediately to check out the pictures. All I can say is YAY! They are fabulous. One thing I forgot to mention was that to me it was very important to get pictures of Mikey and Gary alone. I wanted Daddy and Son pics because we don’t get many of those. Plus (I’ll try to keep this short) for Gary it is sooooooooo very important to be there for Mikey since when Gary was 2 his dad just up and left. So for him he wants to be the dad he never had to Mikey. So I wanted pictures of the two of them together. And boy did I get my wish.
Here’s the link to the fabulous photos I love every single one of them. Hope you enjoy them as much as I have!
When life gives you lemons
Make Lemonade!
I’m not the kind of person that says cliche’s much only because my husband, Gary, would QUICKLY tell you that 80% of the time I get the cliche completely wrong. 
Ok maybe its closer to 99.9% but I think I got this one right.
It seems like our little family is thrown challenge after challenge after challenge in our faces. I guess that means we are *THAT* good at handling them. Just when we could use a break and just live a relatively normal life we are thrown a curve ball. Our latest challenge……Gary has stage IV lymphoma. If you want to get the low-down feel free to go to his site where he’s documenting EVERYTHING about what he’s dealing with, there’s a nice fancy shmancy link in my blog roll too.
So yeah back to the lymphoma. We totally didn’t see this coming. For the last 19 months we have lived our lives thinking he had something called T-Cell LGL Leukemia. It’s a super rare form of leukemia and most people with it NEVER need treatment. He was a wait-n-watch patient for the last 19 months. Back in January, at his last hemotologist/oncologist appointment, his doc once again pointed out how unsure he was that this was the condition only because he has shown NO symptoms. His only symptom is one he’d have NO clue he was experiencing, he has really low platelets, that’s pretty much it. No chills, no fever, no night sweats, no weight loss, NADA. At that appointment his doc thought maybe it was something called ITP with would be great because its an immune disease that is easily treated with medication. Not life-ending or anything!
About a month later I was fiddling on cnn.com and came across this article: Don’t call him Dr. House. Gary and I are BIG time House fans, and for quite some time have openly joked how we needed to get him to Dr. House to get the final answer as to what the hell he’s dealing with. So how random I find this article that mentions something similar being done at NIH.
I started to look into it further and found a contact at NIH in the department that we needed. She had me send not only his medical records but also slides of his bone marrow biopsy. A week or two later she emailed me asking if Gary would be fine with coming up there for some more tests. Ummmm of course he’d be fine! So I went ahead and coordinated our first family trip up to the nation’s capital. Figured we’d fit in some sightseeing while up there too. He had 2 half-days of tests which included 34 vials of blood, a bone marrow biopsy, and a CT scan. We met with the “team” after all of the pricking and prodding and the main doc really thought that this was something that would just blow over. Boy was he wrong!
He called us just shy of 2 weeks ago to tell us the news. Gary has a condition called Peripheral T-Cell Lymphoma. It’s stage IV only because its in his bone marrow, blood, and his spleen is slightly enlarged. He needs chemo, and he needs it soon. This is an aggressive cancer and the docs want him to fight it before he starts to show any kind of symptoms. Plus most people would have shown symptoms by now, he’s going at least 2 years without any, so we don’t know how much longer he’ll be symptom free.
So yeah this new challenge totally trumps all of our little trivial ones we’ve dealt with over the past 10 years. It’s always something though!
We think we’ll be heading back up to DC within the next 2 weeks. I’m sure we’ll know something definite this week since things need to get scheduled soon. Actually, we still need to discuss if he is definitely going to DC or not. I have a feeling he is leaning towards that but really he’s the one that makes the final call on that. He could get treated down here but it wouldn’t be the same type of treatment. Lots of pros and cons for both going to DC for treatment and staying close to home. I know its scary for him to have to even make this decision, shoot I’m scared to death too about this, but I know in the end he’ll make the right decision.
A recent widow and single mom doing my best to survive on my own.
Last year I told Gary that I'd raise $1k at the 2010 walk, please help me reach my goal. This year Gary is one of the Honored Heroes for the walk so its even extra special to me. :) Just click on the Sponsor Me image to be taken to my fundraising page. Thank you!!!
Help me get to my 1st Half Marathon in Walt Disney World where I will run in memory of Gary :)
