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

So the rest of the results….

Posted by Sammy on Nov 5th, 2009 | one comment

Well late last week Gary got a call from the main doc on the research team to tell him about the results of his blood flow cytometry. Turns out his blood is still positive for lymphoma. No surprise there, why would it be negative really? Gosh you’d think the marrow, that creates these blood cells, which is negative would impact the freaking blood, but nope not enough. The good thing about it is that his blood has improved. Apparently before chemo it was something like 66% then after round 4 it went down to around 30% and then at this restaging it was down to around 6%. So a pretty decent improvement. We’ll take it, that’s all we can do at this point.

Right now he’s a wait-n-watch. He’ll go back up to the NIH for another restaging in January. They are hoping that once his immune system kicks into high gear it’ll take care of the rest of the bad cells. I can only hope because he really needs a break from chemo. A nice LONG break would be ideal, like I’m talking forever kind of long.

So we’ll remain positive. His body WILL take care of the rest of this. He’s a fighter and a damn good one too. If anyone can beat Lymphoma its Gary.

A curveball of sorts

Posted by Sammy on Sep 25th, 2009 | one comment

Today started off pretty uneventful which for us is not too shabby. We got up, headed downstairs to the free breakfast our hotel offers, went back to our room and got ready for what would be a long first day at NIH. Gary had labwork at phlebotomy that took what seemed like 45 minutes to do. Then we headed up to clinic and waited another 45 minutes when Gary had to head downstairs for his CT scan of his chest to rule out a fugal infection. He came back upstairs within half an hour and then we waited another 45 minutes to get called back. Oh yeah as we were walking to our room Gary’s legs gave way again, just like the plane ordeal! That was fun, at least a doc was there with us.

Then he talked to the fellow and he left the room after about 20 minutes with us and went to get the team. I know I didn’t expect to hear what came out of the doctor’s mouth and I’m pretty sure Gary didn’t expect it either. The doctor basically gave Gary an out. He told him that usually after round 4 most patients are in remission and he didn’t seem too hopeful that rounds #5 or 6 would make that happen. Gary didn’t have to think long and hard on the choice he was given. He did what I would have done and that is to keep fighting the fight. He went into this knowing it was 6 rounds and here we are for round #6 so as long as he’s healthy enough to do it then why not give it a chance? Plus if he had decided to stop then he’d have to live with that guilt for the rest of his life, that “what if”. I know I couldn’t live with that hanging over my head day in and day out if I were in his shoes.

So he’s at the NIH getting another blood transfusion, yup he needs MORE blood, and he’ll officially start round #6 early tomorrow morning. We don’t know what lies ahead after this. All we know is that he’ll come back up to DC for tests in 3 weeks, but that’s it.

Never in my life have I felt more afraid. The anxiety of the unknown has been so overwhelming the closer we came to this final round. And I know its not going to get any easier any time soon. So much for having our lives go back to some bit of a normal after all of this.

All I want is for some better news, is that too much to ask for? Am I being too greedy to hope that he’d be cancer free in both his spinal fluid AND blood? All I do know is that I will cherish each day like it is my last. Not his last, my last. Cancer is an ugly ugly disease and I hope that one day a cure is created so that so many others don’t have to go through the pain and heartache that our family has had to go through.

One never ending day

Posted by Sammy on Sep 15th, 2009 | one comment

It’s been awhile since I’ve wanted a day to be over already because it was so just god awful bad. Today was one of those days. Where do I start? Oh yeah last night, Mikey was super cranky because he’s got his last 2 molars cutting through. Let’s just say he’s totally not himself. He wasn’t given any pain meds before bed and I thought for sure he’d wake up in the middle of the night crying. Nope he wasn’t the one to wake me up, it was Gary.

Around 2am Gary woke up with EXCRUCIATING pain in his knees. He described it as a razor like pain, or like getting shot in your knees. However you’d like to describe it, it did not look like fun at all. I called up the nurse at the NIH and she told me to give him oxycodone. We have to be careful with what pain meds he takes right now because he’s neutropenic. But that is one pill we both have and is safe for him to take.

So I gave him 2 pills (the max is 3). Half an hour later the pain was just getting worse and worse. In the past when we’ve gone to the hospital Gary was able to walk but when he told me he wanted to go but couldn’t walk I knew our choices of hospitals would be REALLY limited. Like a good wife, I picked up the phone and called 911 at 2:30. Within 5 minutes we had the paramedics in our house with a stretcher to take Gary out since he absolutely could not walk because the pain was THAT bad.

He got to the hospital and I followed in my car. We were there from about 3am until just before 7am. They gave him demerol which helped his pain immediately. They also did an ultrasound of both legs to make sure he had no clots, and thankfully both legs came up clean. The last time we were in the ultrasound room at a hospital was when I was getting my last ultrasound at 8 months pregnant. Let’s just say its totally different when its your husband laying down.

So the reason for the pain? We aren’t sure, but we *think* its caused by the neupogen shots he has to do daily to help generate his white blood cells. It’s known to cause joint pains in your big joints like your hips and knees. Gary has NEVER reacted like this but I guess never say never right?

Oh so yeah about it never ending….we went home and tried to catch up on our missed sleep. I got up and went to work and Gary texted me telling me he heard back on “THE” results for his spinal fluid and his blood at the NIH. We were hoping the longer the better. Shoot you’d think having more than a week on the blood would give us GREAT news right?

WRONG! Dead wrong! His blood still shows positive for lymphoma. We have no clue if this is working. They couldn’t tell us if they have seen any improvement in his blood. Which royally sucks!

But hey we did get some good news. His spinal fluid is finally cancer free!!!! Take that lymphoma!!!!!

His ommaya treatments are not over. He has 2 more treatments that are 2 weeks apart and then he’ll have 3 treatments once a month. His last treatment will be at the end of January.

So stay tuned, I’m sure I’ll have quite the update next Thursday after we talk to his doc. I’m NOT looking forward to that talk because I just don’t know what lies in store for us.