The power of positive thinking
For quite some time my good friend, PJ, has been trying to get Gary and I to watch The Secret. Finally she just went ahead and bought us the video and had it sent to our house, so no excuses to NOT watch it. So the other night since there is nothing good on TV anymore I popped in the dvd and we watched it.
She said it is inspirational and it is. A lot of the things the video talks about are things I have seen in our lives. For example, when I’ve gone into job interviews being very confident in my strengths and basically taking the job from them I always ended up with the job. The video emphasizes in how if you send out positive energy then good things will come your way. So I’ve been doing my best to change the way I think.
Like for example, with this Lodge at NIH that I put in the request for. There are only 34 rooms there so really I don’t have much chance right? Well I put in my request yesterday and instead of thinking I wouldn’t get in I’ve been thinking that I will be staying there and low and behold the social worker calls me up this morning to tell me I got in. Granted that means nothing because they can apparently bump me at the last minute (which I’m hoping doesn’t happen). Normally I’d be chanting in my head “You aren’t gonna get bumped…..You aren’t gonna get bumped”. But instead I’m chanting “You’ll be staying at the Lodge! You’ll be staying at the Lodge!”. Honestly it can’t hurt to change the way I’m thinking. We could use all of the positive vibes anyways so if it means changing my sentence a little then so be it. Worth a try, right?
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!
First chemo trip planned….ugh
It’s all a little more real now. Gary….MY HUSBAND…..will be starting chemo 2 weeks from tomorrow! Eeeeeeeeek!!! We are both mentally ready to go through this or at least I think we are. But ya know what, as ready as you say you are I don’t think you are ever really ready to see your loved one pretty much killing themselves in order to hopefully get rid of the dreaded thing we call, cancer. I really really really really hope this works. On Friday he was a tad overwhelmed because the travel agency at NIH called him up to book his flight and he got a tad flustered when they told him that they would not book my flight at the supposed government rate we were promised. I told him at that point that *I* take care of all of this stuff from now on. I do NOT need him focusing on all of the little details. He just needs to show up where I tell him to show up at the time I tell him to of course. But all of the little details, I’ll take care of.
And ever since then I have been taking care of things for him. So we have our flight booked. We have a hotel for the first two nights since he won’t be admitted until the 3rd day. Let’s just say the hotel wasn’t cheap but what can you do. This morning I called up his social worker and had her put in a request for me to stay at their Safra Lodge. It’s directly across the street from the building he’ll be in. Problem is its small (only 30-something rooms) and its based on priority. Even if they say I can stay there I can get bumped if a patient’s family that has someone in ICU needs a place to stay, they’ll bump me. But I have a back up plan, always gotta have backup plan! I’ll first try to stay in his room with him. If that doesn’t pan out a good friend of mine up in DC has opened up her home to me.
While I’m mentioning good friends I must say that ever since we’ve gotten this official diagnosis we’ve gotten this overwhelming support pouring in from everywhere. So many people that I know, whether they are friends I hang out with or online friends that I have talked to for years but never met, they all have been so very supportive. People willing to cook us meals, watch Mikey for us, shoot even get tested for a bone marrow match if for some reason we need to go down that road. It’s just been absolutely amazing and touching. I wanted everyone to know that it means the world to me.
Here they go again
It’s that time of year again……in just a few days we’ll be entering hurricane season once again. A nice 6 month long stint that we oh so love. Living in South Florida you actually have to worry about this crap. When we lived in Tallahassee (back in the day) I’d wish for storms to come our way and none really did when we were in school. Now you might think I’m crazy but when I was in school of course you wanted a storm to come, it was a day off of school! Something about being too far inland and just the position of where Tallahassee is, storms RARELY came up that way. But South Florida, that’s a different story.
Just the other night Gary and I were talking about how every year the guys at the NHC would change their predictions. Ummmm is it really a prediction when you are half way through the season? But what’s funny is they don’t only change it once they’ll change it 2-3 times during the season. Why bother predicting in the first place!?!?!?!? Not like it changes MY life if you predict 1 hurricane or 9. All it takes is that 1 storm to come through and wreck everything up. I really don’t need to know OR do care what your guess is.
So this morning I saw this article on cnn.com. I’d say its the 1st prediction of the season but I really think I’ve seen a prediction for 2009 already this year. So here they go again predicting to change the predictions of the 2009 hurricane season.
For all of us in areas prone to Hurricanes, good luck this year!
Let the “games” begin
The day always goes by super slow when you are waiting for something to happen. To me nothing sucks more than waiting for a phone call. Maybe its because I kinda don’t have control of the situation so it REALLY irritates me but I’ve always been like this. So today we were waiting for Gary to receive a call from one of the ladies up at the NIH regarding scheduling his treatments. We are both ready to get this process started, the sooner he starts the sooner its over.
So most of the day was just flying by until finally the phone rang. He finally called me to fill me in on all of the details. Basically he has a choice of two weeks to start. It’ll either be the week of June 8th or the 15th. For the first treatment he’ll have to be up there for a full week. Before they even start the treatment part of it all they need to do a spinal tap and an apheresis (to take out his white blood cells and put his blood back in). Of course nothing about any bit of that trip sounds like fun, but its not supposed to be. If it was then cancer would be the cool thing to have.
So yeah we’ll be heading back to DC within the next 3-4 weeks. Summer 2009 will forever be the summer Gary gets chemo. Pretty memorable huh?
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.
Welcome!!!!!
Welcome to the new and improved SamanthaZullo.com!
I’ve been meaning to start a blog for awhile but I guess I’ve been too consumed with my son’s blog. But I’m now ready to enter the blog world for MY thoughts that way I’m not taking over his blog with my useless babbling.
Edited to add: For those of you that might have tried commenting there was a minor bug in the code but I fixed it. So comment away!
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 :)
