Feeling Better

Well it looks like the muscle soreness is on it's way out, thank God. Was actually able to hang some curtain rods today and cooked my first meal in a long time - seared a Mahi Mahi filet with some brown rice and corn, it was just ok... Actually, the rice was nasty and I'm kinda a fish snob preferring fresh over frozen but hey, it was good to be able to cook again!

I ended up renting on demand "The Hurt Locker" and it was really good, very intense. Kinda makes my situation a little more tolerable being reminded there's guys and girls over there with their lives on the line every day.

Although I enjoyed the movie, I just wanted to document that I had 3/4 of a beer and for the first time in a while I had some pretty serious pain in my back from the alcohol beyond my normal discomfort. I haven't mentioned it in a while but I have the rare symptom of my disease of pain in my affected lymph nodes after consumption of just a few sips of alcohol. That is, when my disease is active is when the pain happens. It's kind of like my own personal PET scan so to speak. There may be other contributing factors because I've had disease in me now for almost a year since my transplant and the pain with beer comes and goes. They don't know a whole lot regarding why it happens but my personal experience is when the pain is there, the cancer is growing. I'll be anxious to see how my required scan turns out before I start the next clinical trial.

Despite this, I'm pretty calm and content. I had a nice conversation with my friend and fellow Hodgkins Warrior Kirsten today and it's calming to speak to someone who is going through the same thing I am. In fact, I'm really grateful to everyone who has reached out to me with support via commenting on this blog or sending me e-mail. It's so nice to hear from people letting you know they care, even if you've never met them... In fact, I've never taken the time to thank my friend Veronica from across the pond but please know Vx that I really appreciate all of your comments. You are awesome!

Tomorrow I'm going to go out and grocery shop for the first time in a while. I feel like I have to prepare for battle coming up and need to "bulk up" in the likely event that I'm going to be feeling not so swell in my stomach from the next trial. If I choose the SAHA trial, 61% of the trial participants reported having nausea. Hell, I forgot what the percentage was but another side effect is anorexia, yikes! To be proactive, I might seek out a prescription for Marinol which has antimetic properties and has been known to give people the munchies, ha! There's another trial I've been looking into called Lenalidomide which has a 35-50% response rate but the big side effect of that one is reduced blood counts and rash. Like Kirsten and I were talking, it seems like nausea is the lesser of two evils as you can somewhat control it but the only way to fix blood counts is through transfusions which I've had plenty and prefer to avoid. Not to mention, when your counts go down, you're suscetable to infection and I don't want to get sick...

Maybe Dr. Younes at M.D. Anderson in Houston has a trial that gives no side effects and has great efficacy...!

I guess the beer has gone to my head too ;)

I'll find out for sure Friday...

Beat Up...

That's how my body feels right now. Today, I really haven't been able to get out of bed except for a trip out for food. The little mini workout I did two days ago has left me feeling like I've been in a car accident or something. Every part of my body aches. I couldn't sleep last night and took a muscle relaxant at 5:00 am and know this has definately exascerbated my listlessness. Now I remember why I stopped taking those things when I was so sore from working out right after my transplant.

Anyway, I made the best of my trip out for dinner by taking my Chipotle takeout to the beach just a couple of hours ago. There's a storm brewing out at sea -- the waves were crashing and there was an eery mist hovering over the dark beach... It was very surreal as I was eating my food!

I'm watching animal planet right now and it's about this guy who turned his studio apartment into a big lizard tank. He lived with all these giant lizards and they ended up killing him and eating him, crazy...

The trip to Lakeland to see the game was a great time. It was a perfect 75-80 and I was part of the largest crowd ever at Joker Marchant Stadium! The Yankees were in town and of course there were a lot of New Yorkers there so that explains it. I tried to use my new handicapped status to get some seats that didn't require a climb up tall stairs but for some reason it was a little more difficult than my last trip to Joe Louis Arena. I think it has to do with the fact that there are so many people at the game that are handicapped! In other words, 75-80% of the fans there were retirees and let's just say some of the ushers were "crotchety". My buddy Eric however was able to find a helpful guy who let us go up and elevator to the press box area. The game itself wasn't great as we lost 2-1 but it was fun to see a pro baseball game at such a little stadium and a great way to spend a spring day :)


Beautiful day for a baseball game!


You know it's a minor league ballpark when there's an eagles nest on top of one of the lightowers! Click on the pic for a closer look


Tough to see my favorite Tiger Curtis Granderson in a Yankee uniform...


Pic of my buddy Eric with a Tiger legend Lou Whitaker. Notice how happy the little girl is in the background running the bases :D I think Sweet Lou had a few Bud Light's during the game (actually he had one in his hand as he was signing autographs) as he was going on and on how great he was! I mean he was a great player but when my buddy Eric mentioned that "he was great in 1984" and Lou responds by saying "he was great well before 84". well you get the picture...


I made a pit stop on the way home to this great BBQ trailor and had a great pulled pork sandwich. I've developed an affinity to roadside food trailors... The food is usually really good and it's supporting local small business.

So I'm hoping this soreness goes away somewhat tomorrow and I can get to the pool and get some laps in...

I'm getting a little anxious to get started on my next clinical trial as I can feel the junk growing in my back. It's especially disturbing feeling it on my spine in my lower back. I'm banking that the next drug is going to knock this back a bit so I can continue to heal.

I'm now able to use my right hand to start my car! I used to have to reach around the steering wheel with my left hand to turn the key so I continue to see small progress with my hands.

With all this said, my mind is still strong even though my body feels beaten down. I'm comforted knowing that I do have options and just need to keep the faith that one of these drugs is going to put me in remission (or shrink the disease down). I feel like I have a break coming my way after all that I've gone through with with the SGN-35 (and subsequent GBS) and it not shrinking my disease. It would just be so much easier to take the side effects of these drugs if you knew they were going to actually work.

This is part of my reality however and I accept it. I'll continue to adjust and be thankful for everything I have and try not to be bitter. I know there's a reason why this is all happening and one day I'll have it all figured out.

Tomorrow's a new day...

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.

Guillain Barre Info

It's been brought to my attention (and thus occurred to me ;) that I probably haven't explained Guillain Barre Syndrome or GBS very well. That is, what it is, and where it came from. In all likelihood, it has been caused by the 9 cycles of the experimental drug SGN-35 I received over the last several months. There are only 2 other people who've developed this condition out of over 300 people in the world who've tried the drug, what luck!

Here's a clip for GBS I found on the net:

Definition
By Mayo Clinic staff

Guillain-Barre syndrome is an uncommon disorder in which your body's immune system attacks your nerves. Weakness and numbness in your extremities are usually the first symptoms. These sensations can quickly spread, eventually paralyzing your whole body.

The exact cause of Guillain-Barre syndrome is unknown, but it is often preceded by an infectious illness such as a respiratory infection or the stomach flu. Luckily, Guillain-Barre syndrome is relatively rare, affecting only 1 or 2 people per 100,000.

In its most severe form, Guillain-Barre syndrome is a medical emergency requiring hospitalization. There's no known cure for Guillain-Barre syndrome, but several treatments can ease symptoms and reduce the duration of the illness. And most people do recover completely.

Causes
By Mayo Clinic staff

The exact cause of Guillain-Barre syndrome is unknown. In about 60 percent of cases, an infection affecting either the lungs or the digestive tract precedes the disorder. But scientists don't know why such an infection can lead to Guillain-Barre syndrome for some people and not for others. Many cases appear to occur without any triggers.

In Guillain-Barre syndrome, your immune system — which usually only attacks foreign material and invading organisms — begins attacking the nerves that carry signals between your body and your brain. Specifically, the nerves' protective covering (myelin sheath) is damaged and this interferes with the signaling process, causing weakness, numbness or paralysis.

Like I mentioned, mine most likely wasn't caused by an infection but the drug although no one has been able to explain why...

I have a feeling that if this eventually goes away, it's going to take months. I just have to continue to adjust to being disabled. That said, I'm going to keep rolling...

I can't help but wonder what may come next... I guess you could say that I've become a bit cynical.

Thanks for the support :)

How to Measure "Progress"

Very carefully because to be honest, there's not a whole lot of tangible progress to be measured...

I notice small things like being able to push the button on my camera and using my right hand to zip up my jeans (my right hand is much worse). Maybe these are signs the strength is returning in my hands, this was the last thing to go... My neurologist said that my functions will return in an orderly fashion (if they return) i.e. the functions that were last to to go are the first to return. I'm working really hard to try and type rather than hunting and pecking as I think it's good PT but it's really frustrating, ugh!

In fact, I have to say that everything I do is majorly frustrating so I find myself laying in bed quite a bit, mwah mwah mwah... As if refractory cancer isn't hard enough to deal with and you throw in this Guillain Barre Syndrome -- sometimes I wonder how much more I can take. I've discovered HULU though and seek out funny stuff on my computer to try and keep my spirits up;) I just finished the last episode of Saturday night live and that Zack dude with the beard from The Hangover was the host and he's crazy. Vampire Weekend was the musical guest and they're pretty talented young musicians. After all these years, SNL still has it!

So I'm back in Florida and it's finally hot here, yesssss! I'd like to get to Lakeland to check out the Tigers in spring training as I'm excited for baseball this year :D I have a week before I leave for New York and thought it'd be fun to check em out before I go.

I've also booked the trip to Houston (MD Anderson) April 2nd. I've recruited my best and closest advocate (my dear Jackie) to join me... After my appt. in Houston we'll be in a rental car heading for Austin for a couple of days as she's never been there. Austin Rocks!!

Ok, I'm done trying to type... I wanted to finish by sending out prayers to Jeremy from the Hodge Forum who is fighting for his life right now at NYU hospital. His wife Maggie has been so gracious and brave to keep our Hodgkins community up to date regarding his condition. Jeremy, according to his doctors, has the most agressive disease they have ever seen and they just can't seem to slow it down. He's suffering pretty bad and has asked to be admitted so his kids don't have to see him die at home, so sad... My heart goes out to those guys.

Hope they find peace...

Powering through..

Just finishing up my 4th IVIG infusion. Still no noticeable improvement, ugh. Have some pics on my phone that I thought I'd share to break up the monotony...


Was able to catch a Wings game at the Joe Friday! Used my hopefully temporary handicapped status to get seats from guest services that didn't require using stairs. Still sore however from the walk to the arena from the car...


Check out all the banners in the rafters. There's a reason why they call it "Hockeytown" here :)


Two great caregivers, my Mom and Rich (can't forget Chili :)


Chili running up the stairs to visit me in my "cave".


Chili working on her suntan!


My infusion nurse Kip is a musician and he brought me a uke to goof around with. He taught me how to play over the rainbow! It's only 3 chords and I'll keep practicing as a fun physical therapy exercise :o)

IVIG Update

So, I was approved for home infusion of IVIG after my doctor threatened (the insurance company) to admit me to the hospital... They were dragging their feet and would've had to pay for a hospital stay plus the drug if I were to be admitted. In the end, I think they made the prudent decision and ok'd the outpatient/home infusion which benefits everyone.

I thought I'd be feeling some relief already but unfortunately I still don't have any strength in my hands and need to lean on something while standing (not to mention walking like a duck!)

I re-booked my trip to New York and also planning a trip to MD Anderson in Houston to see the renowned Lymphoma specialist Dr. Younes. They have a bunch of clinical trials there that sound interesting...

That's it for now, looking forward to when I can type again as I have a lot on my mind!