My “purpose”

Posted by Sammy on Apr 20th, 2010 | 6 comments

In the past couple of months I’ve been racking my brain trying to figure out why just why Gary came into my life AND left my life so early. I felt like we had so many unfinished things to accomplish. But apparently he thought that I’d be able to continue and finish some of these on my own.

Well lately I’ve been having these ideas. Obviously even when Gary was alive I felt like I had to do everything possible to not only have him cured but to ensure a cure for others with cancer. Once it hits home, you feel that overwhelming urge to do something. Shoot that’s why I joined the bone marrow donor registry and donate blood every 2 months

The other day I had emailed our social worker up at the NIH to ask her a question about donating to have a bench in memory of Gary. I remember on many occasions Gary and I would go out to the courtyard and sit on a bench to get outside of the “hospital”. I remember seeing these little plaques on some benches where they were dedicated to an individual. So I contacted his social worker and heard back from her within hours. I have to contact someone else, but I’m crossing my fingers that I can do that. I know Gary would have loved that idea.

Over the weekend when I was going through Gary’s emails I came across a random one from a company that sent him a message through his website. This company wanted to talk to him about his condition and his treatment and how it has affected his life. I felt compelled to reply to them to let them know that Gary passed away but that I’d be more than happy to talk to them if they wanted to talk to me. Well, this afternoon I got an email from the guy asking if I’d be available tomorrow to chat with them. So I’m going to do it. If it’ll help someone, anyone, I’m all for it!

Lastly, but definitely not the least, this one is HUGE in my opinion. While Gary was undergoing chemo he had always joked about writing a book. His cancer book was going to be this witty book, just like the way he blogged. So I got this bright idea over the weekend to attempt to write a book myself, but mesh some (or all) of Gary’s blog posts into the book. It’s a pretty big undertaking but I don’t think it’ll be that difficult because its a topic I’m passionate about.

So we’ll see, if I’m meant to do all of this Gary will guide my way and will help me from above

A fabulous family vacation

Posted by Sammy on Oct 28th, 2009 | no comments

We originally had a Disney trip scheduled for both my birthday weekend and Mikey’s birthday weekend. Got awesome rates so why not go. Well once we learned that Gary’s last chemo treatment would coincide with my birthday weekend we had to cancel that trip. Then during that trip we learned that Gary would need to be back up at the NIH a few days before Mikey’s birthday weekend therefore messing up that trip.

We even had considered having him fly into Orlando instead of Ft. Lauderdale to meet us up at Disney but thankfully we didn’t do that because this last trip, that was just for diagnostics, was REALLY hard on Gary. Before he left he was having these fainting spells and seriously had bruises and cuts all over his body. It was BAD and what made it worse was that he was going on this trip all alone. On that trip he learned that he’s been suffering from sinusitis and they gave him antibiotics and flonase to help.

Now once he was home he wasn’t much better. He had these HORRIBLE headaches that would basically incapacitate him. He got NO relief at all even during his sleep. None of the really good narcotics he had helped. Finally we broke down and went to his local oncologist, Dr. P, to see what’s up. He told him to continue with the antibiotics and flonase (which he wasn’t using religiously). He did order an MRI of his head because he did want to check for inflammation of the lining of his brain due to the depocyt.

So after the doctor’s appointment he miraculously started to feel better. Then last Thursday came when we were supposed to leave for Disney. He was once again incapacitated by those damn headaches. They were so intense that he wasn’t able to move from the same spot on the couch all day long. Finally he was able to get to the car and we decided to go anyways. I was very sure that he would feel better once we left,

And he did. He felt a ton better. He had a few headaches but overall he did FANTASTIC on our mini-vacation. We got him a scooter so that he didn’t have to do the walking and that made all of the difference.

To top it off last Friday as soon as we got back to our room (I tell you I’ll NEVER forget this moment), I took my cell phone out of my bag and put it on the table so I could check my emails before napping. As I had my phone in my hands it rang and it was Megan, the Research Nurse at NIH. I immediately picked up. I knew why she was calling just wasn’t sure if I wanted to hear what she had to say.

I’ll preface this by saying that I didn’t want to hear any results from his restaging before we left because I didn’t want it to ruin our trip. I wanted us to have fun and forget everything that is lymphoma and chemotherapy. Everything! Well what happened next was the most amazing thing probably next to the birth of our son. Megan told me that she didn’t have all of the results back yet but his bone marrow biopsy results came back NEGATIVE for lymphoma. Yup you read that right. N-E-G-A-T-I-V-E!!!!!!!! I got all choked up when she told me and asked her if she was sure and she was.

This has been the best news yet. Yeah it was great the day we found out his spinal fluid was clear but we’ve known something wasn’t quite right with his bone marrow for over 2 years and to know that its NORMAL is beyond fantastic.

So that made our mini-vacation one neither of us will ever forget. We all had a reason to celebrate on that trip.

So Helpless

Posted by Sammy on Jun 10th, 2009 | no comments

The day started out pretty good. We got up, had “breakfast” downstairs in our hotel. Then hopped on over to the Metro and got over to NIH just in time for Gary’s Apherisis. He got all hooked up and did sooooooo well. They thought it would take 1.5 hours at least but he was done within 45 minutes. We had time to chill out in the courtyard for a bit before it was time to head upstairs for his Lumbar Puncture (aka spinal tap). I got to finally meet George who is THE guy apparently for bone bone marrow biopsies and spinal taps. He is AWESOME and you’ll soon find out why I now think he kicks ass!

He performed the LP and Gary had to lay flat for about an hour. After that we hopped across the hall to one of their outpatient wards for a HUGE blood draw. The research nurse wanted him to go there instead of phlebotomy because of the fact that it was a large amount and she wanted to make sure there were nurses there nearby. Good thing because he started to get a really bad headache that got worse and worse and worse. They called George up and he came by and prescribed some percocet for Gary. Gary took it but it hardly did a thing for him. He was also feeling extremely nauseous on top of the headache too. The entire time he was in there George came in and out to check on him. That to me is a GREAT doctor.

So back to the story…..He needed to eat but he felt too sick to do that. So finally they gave him an anti-nausea medicine and not even 2 minutes later he threw up, good thing he had the trash can nearby. After he had his puke-fest he felt soooooo much better. He was no longer nauseous and his headache was practically gone too. Hallelujah!!!

They gave him some ginger ale and he seemed to be holding it down so they let us go back to the hotel (after they did an EKG of course since that was the last test to do after the large blood draw). As we were walking out of NIH he started to feel queasy again. We got on the shuttle to our hotel and the entire ride was super shaky. I knew this was not going to help him, and I was right because as soon as we got back to the hotel, even before we could get onto the elevator he puked 3 more times. Good thing they have a door by the elevator because he was able to run outside.

So he’s been sleeping for over 2 hours now with hardly anything in his stomach. I feel absolutely helpless. Poor guy has a CT scan in the morning and he’s not supposed to eat before that so he’s going to be STARVING. I just hope that the barium that they make him drink doesn’t come back up like everything else has today. If it does then tomorrow too will prove to be a very interesting and LONG day.