Off to Tigertown!

Getting ready to jump into the shower and head up to Lakeland FL aka Tigertown. Actually, I'll be making a pit stop in Orlando tonight to meet my buddy Eric and we'll carpool from there. Can't wait!

I'm starting to feel slightly better regarding my GBS... I'm still nowhere near normal but seem to have very modest imrovements in my hands. For instance, I'm almost able to type with both hands now without having to hunt and peck, thank God! I still can't fully extend my fingers on my right hand (i.e. flipping the bird or giving the peace sign) but it's moving in the right direction I think. At least I know it's not getting worse!

With that said, I'm doing a little bit everyday to try and regain some of my strength. The last couple, I've been doing laps in the pool (20). Today, I did some pushups from my knees and some squatting without weights. Funny how my muscles have totally "disolved". I'm basically starting over... I'm still waiting for insurance approval but I have a trip booked to Detroit on 4-14 where I'm hoping to get more IVIG. I'm hoping this can speed up my recovery.

As far as treatment, I've also booked a trip back to New York where I'm tentatively scheduled to start SAHA and Niacinamide on 4-19. This may change if Dr. Younes blows me away with a program at MD Anderson but for now this is my plan. Once I make my final decision, I'll go into more detail about my new trial.

This has been a stressful week and I'm looking forward to hopefully forgetting about all this jazz for a couple of days.

Alright, time to roll outta here. I hope to have some pics of spring training soon...

Up in The Air

I watched this movie last week and while I’m not quite as prolific a traveler as George Clooney in the movie I think I’m pushing the limits as a cancer survivor! In the movie, Clooney’s character talks about how he’s actually “home” when he’s on an airplane. I don’t know if I feel quite that way but can say lately that I kinda feel “homeless” with all the travelling I’ve been doing. It’s kinda freaking me out knowing that in the next couple of months, this is only going to increase as I get started on my next clinical trial. If I pick the SAHA trial in New York, it requires weekly visits for blood checks etc… While I had a great time in New York and really enjoy it there, the thought of doing the trip every week with my mobility issues is daunting to say the least…

Before I get started on my trial though, I need to make another trip to Detroit for a second try at IVIG. This time it’ll be a 3 day infusion and I’m hoping to God it works this time (at least a little). It’d be so much easier to do what I have to do to survive if I had 50% function (I’d take that) of my hands and legs. The AFO braces that I have help out but they kill my feet after an hour or so and they’re a pain to put on and take off. I need some relief here!!

My God, I forgot I’m leaving for Houston next week, eek gads…! (my grandpa used to say that, ha!)

So now that’s off my chest, I just wanted to briefly mention how grateful I am that members of our congress and the president had the guts to take the first steps in healthcare reform. I know there are a lot of people out there that aren’t happy with the legislation and I guess that’s to be expected. There are parts of it that I don’t necessarily agree with and I’m concerned that the bill really doesn’t do anything to try and control the skyrocketiing costs of healthcare. However, with that said, for me personally I’m going to see immediate benefits. First, my insurance company can no longer put a lifetime cap on how much they pay out for my treatments. I’m not sure, but after all the treatment I’ve had I know that I was starting to get close to that number. Secondly, if for some miracle I’m able to ever re-enter the workforce and that company has a different insurance carrier, by law they wont be able to discrimate against me and deny coverage based on my pre existing condition, hooray! I have plenty of friends who are sick and not sick that are going to benefit from this bill. To the detractors, i.e. the Republican party, all I have to say is they had a chance to reform healthcare for six years during the Bush administration when the GOP controlled everything and nothing was done. They could’ve shaped it and done a lot of good for the American people. It’s not like the problems we have today with healthcare didn’t exist back then… I guess it's easier to criticize than do something good.

Anyway, these things have a way of working themselves out in a democracy like we thankfully have. Just like the Americans voted out the GOP, we’ll vote out the democrats if this bill proves to be a disaster. For now, I’m going to enjoy this little peace of mind that I’ve gained and see what happens down the road.

By the way, I have to document this crazy lady that I’m sitting next to right now… She keeps telling the crying babies on the plane to shut up, keeps looking around her seat and is looking at her watch every 2 minutes. She is a total nutbag and I’m so grateful that I have headphones on and can tune her out. What a wacko!

These next several weeks are going to be interesting…

NY Pics

My friend Terry (Jackie's cousin) showed me around the city today and I remembered to bring my camera! The weather was perfect... Rode the subway, took a ferry and rode in a rickshaw. What a fun day! Thanks a lot Terry :)


Jumped on the free ferry to Staten Island for the best view of The Statue of Liberty


Can't remember the name of this pond... We took a rickshaw to get around Central Park. The AFO's kill my feet!


Taken at Strawberry Fields in Central Park. Everyone was singing "All You Need is Love". I felt like it was a tv commercial or something!


Thought this was cool, next to Trump Tower


Quite a contrast to the hustle and bustle of Manhattan...


Just outside John Lennon's apartment where he was shot


View from my from my room at The Hope Lodge


Greeley Park just down 32nd street from The Hope Lodge. Nice place to have coffee or lunch outside...

Chillin in New York!

So I'm here in the big apple (actually solo after my buddy had to back out at the last second) and all's well. I met some friends for St. Patty's down near Wall St. at a place called Ulysses and had a good time. Went to see Dr. O yesterday and he's very smart and has a great attitude. He recommended a couple of drugs for me, SAHA (which he helped develop) and Belinostat. These are both trials that have shown activity in Hodgkins. I'm staying at this great place called the Hope Lodge which is funded by the American Cancer Society and it's right in the middle of Manhattan (by Madison Square Garden) which is great.

From here, I plan to do some sightseeing (as much as I can with this damn GBS). The weather is beautiful so I'd like to see Central Park and maybe get up in the Empire State Building for an aerial view of the city. There's such great energy here!!

I can see myself coming back to NYC to do one of these trials for sure... ;)

So, up next is Houston and then I'll make a decision.

To be continued...

Rest In Peace Jeremy...

Yesterday, 10:05 PM
MaggieTracy
Senior Member Join Date: Apr 2008
Location: Brooklyn, New York
Posts: 369

He's gone

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Jeremy passed away this evening at 7:40pm surrounded by his family. While I am devastated I know we did everything we could. I am at peace with him being at peace.

Maggie

AFO's

So I've got a little bounce in my step these days, ha! Actually, I don't think they do a whole lot but give me a little support which I will gladly take. Plus they're a great look with shorts, lol. The price tag, $1000, crazy! Aetna picked up 90% of the tab thankfully. I feel really blessed to have insurance and bad for those who don't because the prices these companies are charging for drugs and medical devices right now is absurd. The health care industry is way out of control...

Anyway, I plan to put them to good use as I leave for New York on Wednesday. I took em for a test drive tonight by going up to the mall and walking around for the first time in a while. I sort of feel like a robot in these things (you know how the terminator had that purposeful walk?) I need to bring them back to get trimmed tomorrow so I can fit em in some other shoes. Not sure if I'm going to wear them through the airport as they're a pain to put on and take off with my weak hands...

Speaking of which, I still haven't noticed a whole lot of improvement in my strength and I'm getting a little worried. If there is any improvement, it's barely noticeable. I can now open my meds without it taking 10 minutes and I'm barely able to type so I guess that's a start! I sent an email to my neurologist and going to see if I can get another round of IVIG although I'm sure to get some pushback from the insurance. We'll see how it all shakes out...

I just need to keep the faith that things will get better for me. As I've written about before, it's so much easier to keep my spirits up when I'm feeling somewhat strong physically (relatively speaking). I know that I'll always have pain and it's tough enough to deal with that. However, to wake up every morning with the soreness in my legs and back that I have and then to face the fact that everything I do physically from that point on for the rest of the day is going to be a challenge... Let's just say it takes a lot to get out of bed.

I'm happy to say however that the morning is probably the worst time of the day and it seems to get better from there (at least my mindset). Sometimes I look at my situation and wonder how I haven't lost my mind by now! Hell, maybe I already have, ha! It's so weird how you just get used to things... It's crazy how we adapt to our circumstances. I know there are so many people who have it so much worse than me and I used to wonder how they did it but now I understand. Actually I've understood for a while now but felt compelled to mention it for some reason.

I'm having DejaVu, I think I've written about this before... Maybe it's satisfying to bitch and moan sometimes, I don't know.

Well, my right hand has pretty much locked up now but that was a decent typing session for a while.

Thanks for reading my venting...

Looking forward to sharing my New York experience :o)

Dan Van Gogh

Got out of the house for a bit this afternoon to go down to the St. Patty's parade on Atlantic Ave. Actually I went to my buddy Dan's space at the little area where local arists show their stuff (to support his stuff).

He got some wow's and long looks and sold a few... I told him I'd help him sell some of his paintings and he said he'd give me a cut if anyone feels like helping a starving artist and cancer survivor, (I know, shamelessly playing the C card here ;)

Pictures don't really do the pieces justice though as there's a lot of texture and intricaces that don't show up via camera.

Really, if anyone likes any of these, or wants to check out some more, let me know. I take PayPal!


This one took over 6 months to finish...


Click on the picture for larger view









By the way, I just wanted to share a touching post taken from my Hodgkins forum written by Jeremy's wife Maggie today. Warning, this may choke you up.

Jeremy has chosen hospice

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Dr.Zain told Jeremy yesterday that there was nothing more that we could do. He chose hospice care over staying at NYU, so the kids could see him in a non frightening way. We hope to move him on Monday. Jeremy has entered a phase today of terror, and panic. He is having near constant hallucinations, but he still recognizes me. He will only sleep when I am here, so they give him ativan throughout the night. I cry the whole time I am not with him, but once I am here, I just want this to be over as quickly as possible for him. I am still exploring the best way to tell the children. I have started writing about witnessing this process first hand, and it is helping a lot. I have a huge support system. Unfortunately, yesterday my best friends brother was diagnosed with colon cancer, and he is only 36. She had to leave to fly down to florida to be with him.

Soon all of this tragedy, and pain, will be replaced with peace and recovery. I know that God would not have chosen me to be Jeremy's wife if I could not handle this. I can handle this because I know that everything that could have been done was done. I can handle this because I have 3 children that have lost both of their parents for too long to this fucking disease, and that makes me so angry. I am letting myself feel every emotion I have from anger, to sadness, to joy, to relief. My children have an amazing love story about their parents that they will grow up hearing. Life will go with Jeremy's energy pulling us through. His life and death will never be in vain, because I will live the life Jeremy wanted for me. He gave me the vision on how we wanted our kids raised, and I will create the painting. I have been living the past 3 years in a state of hope, and with a lot of fight in me. I don't plan to give that up. The universe will take of us, and I will continue to give it back in the form of wisdom to all of you, as I have learned SO much about what we as humans are capable of.