Support Light the Night Pub Crawl Style
Big Thanks to Eric for replying to a post of mine about the event the Ft. Lauderdale Pub Crawl is hosting this Saturday the 29th starting at 9pm in support of Light the Night!!!!
The event starts at America’s Backyard in downtown Ft. Lauderdale. Spread the word and come out to support the LLS!
I wish I could be there but I’ll be busy packing for our trip back up to DC for round #5!
If you haven’t joined our LNT team yet please come by and join us for our kick ass team that will be walking on November 7th.
Join us and help us raise money to cure 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*
Round 4 over and DONE!
Here we are again on our way back home from yet another round of chemo. It’s been a quick trip. Can only hope the last two go this fast. Gary is officially starting the detox stage of chemo. He should start feeling better after the weekend. I’d knock on wood but we are on the shuttle headed to the airport so I’m asking my readers to do that for me 
Till next time NIH!
Fifty Dollars and Thirty minutes later
This morning while at NIH we had a nutritionist come see us to give us lots of idea of things Gary could try eating to help him either gain or at least not lose more weight. It was very informative and I definitely have lots of ideas to try!
Well we had also talked to one of the docs this morning and after talking to her she realized that Gary probably needs some kind of medication that will make him hungry. She suggested a medication, that is completely legal, that is just like marijuana, and it should give him the munchies. There is a slight chance it could make him hallucinate and if it does we need to call a doctor immediately (guess they don’t like that reaction). So we’ll see if this works out. I sure hope it does.
Oh yeah and once we got back to our hotel, since Gary is outpatient now (WOOT!), I made my way to the local Safeway to go grocery shopping. While at NIH I managed to call our hotel up and get us a mini-fridge since it doesn’t come standard with our freaking large room. So since we have a fridge I now can buy cold stuff. So half an hour and Fifty Dollars later I walked out of there with this:
Here we’ve got Peanuts, Dried Pineapple, M&M’s, Cheese & Peanut Butter Sandwich Crackers, Carnation Instant Breakfast, Swiss Miss Hot Chocolate with Extra Marshmallows, Applesauce (for the prednisone), chocolate pudding, whole milk, apple juice, and yobaby yogurt (since it is made of whole milk).
Ordered to EAT!!!!!
I knew it was coming, and secretly was hoping it was going to come. The doctor’s yesterday basically ordered Gary to eat and eat high calorie and high fat foods because he has lost over 40lbs since he started chemo back in June. That’s WAY too much weight loss, especially for a person that really didn’t have much weight to lose in the first place. We met with a nutritionist this morning that gave us a packet with all kinds of ideas to get him calories.
It does sound like they might even give him something to help increase his appetite. The doc did mention something about a marijuana-like medication that will help give him the munchies.
Right now he’s getting the last bit of Siplizumab (I don’t think I ever spell that right) and they should be switching him to his 24hr EPOCH bug within the next 15 minutes or so. Then we’ll be off to the hotel and I’ll be off to the supermarket in hunt of high calorie munchie type foods for the hotel.
Now I just need to keep MYSELF from eating this stuff because as he loses the weight I’m gaining it.
And here we go again
I’m writing this post from my fancy iPhone 
We are sitting outside of our hotel waiting for our shuttle to arrive to take us to hell oops I meant NIH.
Ok my bad they aren’t that bad. They are still a thousand times better than any local hospital we can go to back at home. It’s just what the NIH represents to us that ubberly sucks.
Today is a busy day. He’s gotta get bloodwork as soon as we get there. Then clinic at 1:30, PICC line placement at 2:30. Then get admitted for his hopefully overnight stay. Suplizumab should start early tomorrow morning and EPOCH should start around 11 which means he should be outpatient after that. *crossing fingers*
Another day and Another Trip
One word summarizes how I feel about this…..UGH! Is that even a word? I remember as a kid LOVING to go on a plane. Shoot you’d actually get all dressed up to go flying! I remember as a kid flying overseas to Turkey with my family when I was 6 or 7 and wearing this nifty jumpsuit, because that was the style back then of course. It was something very special to do. Nowadays its not cool in my opinion. It’s getting old and it’s getting old FAST.
I know we have a purpose with all of this back and forth traveling every couple of weeks and all I want is for this effort to be all worth it. I hate staying at hotels, I hate eating out. It’s just BLAH. Not fun anymore. What I hate the most besides leaving our little Mikey behind with grandma is the fact that going on another trip means Gary getting yet another dose of that nasty chemo stuff. UGH!!!!
So here we go again, on the cusp of the start of round numero 4. After this one he’ll be 2/3 done. That’s definitely better than half way right?
Let’s Light the Night Ft. Lauderdale!!!
Yesterday I happened upon the Leukemia and Lymphoma Society webpage as I do every once in awhile. I happened to see actress/comedian, Tina Fey’s, name and decided to look into it. Well apparently she’s the 2009 Light the Night Walk National Spokesperson. Pretty cool. I watcher her video and got chills throughout my body when she said “Cancer. It’s a dark word. When it’s directed at you or a loved one, it can turn your world upside-down…”. I couldn’t have said it better myself because I do believe that it has turned our world upside-down.
After watching the video I decided to create a team in hopes of bringing together the family and friends that have been by our side throughout this entire god-awful journey. So Team Gary’s Guardian Angels was born.
I’m excited to get everyone to walk along Gary and me this November. By then he should be done with chemo and will be on the mend and what a better way to show cancer that we kicked it in its ass than to get a large group of people to show cancer that we did it together!
Oh and here’s the video that gave me the push I needed to start up our team:
What a trip home!
We’ve been home for almost two full weeks and poof its almost over. 
It’s been a ROUGH trip home, not as pleasant as we had hoped it would be.
It started off with a bang too. The first weekend we were home Gary was back at the hospital. He started fainting so after the 3rd fainting spell I started calling doctors and all of them insisted that it was dehydration. He ended up being admitted for a few days, came out doing well but pretty neutropenic.
Speaking of…..he’s been neutropenic a lot longer on this trip because we find out that they upped his chemo on round 3. Apparently he did so well with round 2 that they justified upping his dosage even though he was coming into round 3 with unexplained fevers. I guess what pisses us off the most is the fact that no one told us until this little piece of info slipped. Oooops!
So here we are the Monday before round 4 starts. We leave back to DC this Wednesday. Woopty Freaking Do! I never look forward to going back to DC. I love DC. I think its a great city, but I hate the reason why we have to go up there. I hate having to leave our comfy home to go stay in a hotel for a week. I hate leaving our little Mikey at home, even if he’s safe an sound with grandma. I just want this all to be over. To have our life back to the way it used to be. How silly of me to even think that this is a possibility. Our lives will forever be cancer struck. Yes we’ll get past this but it doesn’t mean cancer will never be on our minds. Gary will forever have to go for follow-ups and we’ll forever be worrying that its back.
How odd to think that our once not-so-simple life is actually EXTREMELY simple compared to what our lives are now. I won’t complain because complaining gets you nowhere. But I will say this, cancer sucks for everyone involved. I cannot imagine what Gary is going through inside. I know I’d handle things way differently than him that’s for sure. We are just different people that handle being sick VERY differently, but I know that I’d hate cancer just the same if I were in his shoes. I would never wish cancer on my worst enemy, that’s how bad it sucks. It breaks my heart to see my once healthy husband wither away in front of me. He’s literally skin and bones now. He’s having a hell of a time with the treatment. If its not dealing with fevers, or migraines, its dealing with a nose that is almost as runny as the faucet in our sink. It’s beyond sad and it hurts me like hell to see him suffer. I want nothing more than to take the pain and uncomfortableness that he’s in away. I guess that’s what any loving spouse would do for their significant other right? I know he’d do it for me in a heartbeat, but I hope he never has to.
He’s fighting for his life and more than ever do I want him to win.
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 :)
