Tuesday, December 28, 2010

Believe!

UPDATE 12/29, 2:07 p.m. : Platelets 52,000!!!


"Believe"!! Side of original Macy's


Winter wonder land at Macy's in Midtown Manhattan :)

Just got back to the room, whew... I don't know why but scan days lately have been crazy...

It all started when I woke from my "nap" at 4:30 this morning. It was dark in my place and somehow I managed to step on a trim nail that was sticking up through my floor (head side up). It went into my foot all the way to the bone (over an inch long). When it first happened, I didn't feel it because of the permanent nerve damage and numbness in my feet. I knew it was bad though when I looked down at the nail to see how much it was sticking out of the floor and the blood that started flowing out of my foot. Definitely tetanus shot worthy... I was able to stop the bleeding, cleaned it up, bandaged it and thought it might be ok as it was sore but I was able to walk on it. Boy, has that changed in just over 14 hours! My foot is absolutely throbbing right now and I can barely put any pressure on it, ugh...


This Dog is definitely barking! They ended up giving me a tetanus shot

So, of course the day that this happens, there are almost arctic like conditions in Manhattan! They got pounded here with something like 30 inches of snow in the last day or couple of days. I'm lucky my flight got here relatively on time. As you can imagine, with a super condensed metropolitan area like New York, there really aren't a whole lot of places to put the snow. As result, a lot of the streets are literally walled off with snow. I was gimpy already but having to climb over a snow pile holding on to my bag with just jeans on and non winter boots with no gloves it was a bit challenging to say the least. My walk was from Grand Central Station to NYU Langone is normally around 15-20 mins. I'm not sure how long it took me this time but can confidently say it took a little longer than that this time ;)


This bronze sculpture is around 6' tall. The restaurant (I think the thirsty dog or something) is right next to NYU


Feel bad for whoever owns this bike!



Trying to make a path on the sidewalk. Where the streets are crowded with people, it got a little hairy trying to walk...


Eventually I made it and my foot by now was not only throbbing like mad but soaking wet and freezing cold, fun stuff!

With all of this happening, I was pretty proud of myself for getting there. My nurse was telling me she had patients who lived in Brooklyn canceling their appointments and here I came all the way from Detroit!

So of course with the lack of sleep and the foot trauma not to mention the walk I was completely exhausted when I arrived at NYU. It actually worked to my benefit as I slept all the way through the 45 minutes you have to sit motionless waiting for the radioactive sugar to uptake through the body (if you move your muscles, the dye will go to those muscles and not potential cancer sites). I also slept all the way through the 45 minute PET scan that is normally pretty uncomfortable having to hold your arms over your head the entire time.

So, to the good news, my disease is stable! There were modest reductions in some areas (less than 10% I think) which I'll take as my tumors are considered relatively small right now. So, since the start of the trial in April, I have a total reduction of 5%, pretty much exactly where I was when I started. The difference between now and then is that at least now I have some quality of life beyond the normal fatigue and pain issues. You know what, I'll take it! If I can keep things the way they are for a while, I'll be a happy camper :)

There is one caveat however (it's never easy). My platelets came back at 41K and 40K on both tests. I need to be at 50K and until then, I can't continue the trial. I've been through this before though and hopeful within a couple of days I'll get back up to 50K. I'll be going back to NYU tomorrow (probably take a cab this time ;) for another platelet check. If they go up (which I think is a long shot for one day), I'll get my pills and plan to start cycle 13 on Thursday. If they don't go up, I'll have to get a STAT blood check run in Detroit on Thursday. Amazing how all of these "little things" add up to dent your pocketbook and create additional stress. It's the new norm for me however and anybody out there that's battling this crap knows that you just learn to roll with it and move on until the next roadblock presents itself. I'm glad I played sports when I was a kid as it taught me competitiveness, an essential element that you need to to battle cancer. A lot of this competitiveness (which like I said I'm glad for) also came from my Dad who I used to battle when I was a kid on the backyard basketball court, the table hockey and ping pong table in the basement in Detroit and the pool table in the basement in Warren. Can't forget about the golf course... Thanks Dad :)

Thinking of golf, I think I'm about due to get out and play a round. After this episode, I think I'm going to treat myself to a round when I get back down to Florida. There's a decent municipal course in Delray that was designed by Donald Ross and built back in 1923 that you can play for $25. It's pretty well kept and has some challenging holes. I'm going to see if they have a program like they had in Seattle at West Seattle Golf Course where you can volunteer to help around the course in return for range balls and free golf.

So, with that nice thought, I think I'm gonna wind this post down!

I'm gonna crash hard...

UPDATE, 2:48 A.M.

Just woke with awful pain in my back, ugh... Failed to mention that the PET report noted my worst spot, in the middle right of my back registered an SUV uptake value of over 16. This is the highest I've seen my SUV levels since the early days and probably the reason for the pain. In other words, this is where the cancer is most active (although relatively small) and must be right by a nerve center, ugh. Took more pain meds and going to try to fall back asleep. The foot is still throbbing but the back has overpowered even that, ugh. Hoping to get good platelet report so I can get the pills and start again tomorrow. Thanks for reading and the support :)

Chris

Monday, December 27, 2010

Christmas Wrap Up


Just wanted to do a quick post to hopefully help me get a couple hours of sleep as I have to wake up in about 4 hours (4:30 a.m.) to hopefully catch a flight to New York's La Guardia airport. I'm scheduled to have yet another PET scan tomorrow to see what my disease is doing and if I can continue on the trial. It's pretty simple, if the targeted areas are larger or if there are new areas, I'm off the trial and it's a scramble to find something else. If I'm stable or better, I'm going to lobby to spread my visits out to every six weeks and let out a major exhale!

The holidays were a nice distraction from this I have to say. It was great seeing my Mom's side of the family on Christmas Eve and hanging out with Rich's side on Christmas. My Uncle Tom and Aunt Linda hosted the party on Christmas eve and everything was great from the food to the prayer said by my Cousin Jeff. He told a story about one of the third graders at the school where he teaches in Wainaie Oahu where he asked the kid if they were having turkey and all the normal fixings for Thanksgiving. The kid replied back, nope, just some Captain Crunch. My cousin being quick on his feet and compassionate replied back, so, is it the kind with the Crunch Berries?! I might have the cereal wrong but the moral of the story is we are very blessed to have what we have and gave perspective and appreciation to the feast we were about to have.

Speaking of family, it was also nice to see Jackie and Gomez! It was almost ugly as Chili got a little possesive of a giant rawhide and almost ripped G's little face off, yikes!

As I get older, I appreciate my family more and more. My grandpa used to tell me that friends may come and go in your life but the one thing you can always count on is your family. He was totally right (well mostly right) and I couldn't be luckier having the family I have. That said, I'm still holding out hope that someone who's in my family but hasn't been around or in touch for a while will realize the importance of family and will do the right thing and remember life is short and sometimes pride should take a back seat to wanting to work to fix problems that have been festering for too long. This person knows that I love them and wish them only the best. I truly hope that somehow this person will see the light and understand that sometimes you have to look at a situation/s through a different lens if the lens you've been looking through for so long has not produced the best results... Time will tell here...

So, I finally went to Yoga yesterday for the first time in a while. My friend Christa was nice enough to hook me up for a free month unlimited at this great studio in Birmingham. I've been to really soft Yoga classes at the SCCA in Seattle and at Gilda's club designed for survivors but this one was for real. It was a "slow flow" class which emphasizes holding the poses for a longer period of time. While I couldn't do more that half of the poses due to lack of flexibility and strength, the ones I was able to do I'm feeling today! My abs are pretty sore and the backs of my legs are starting to feel it too. If I'm blessed to be able to continue, I think it's going to do a lot of good to help me with my balance and the strengthening of my muscles which are barely recovered from the Guillain Barre Syndrome I dealt with up until the beginning of last summer.

I'm finally getting back into reading too which is great. My Mom bought me this book written by Keith Richards of the Stones. I've only gotten through the first chapter but it's a story that sucks you in right away. I have a feeling I'm going to have a different view of one of my all time favorite bands when I'm done with it... I mean those guys were pretty much one of the first Rock bands (can't forget the Beatles) that went through all the stuff you see everyday now on VH1 behind the music. What a crazy life it must be to be a rock star...

I also caught a movie that tickled my funny bone the other night big time. It's an SNL spoof on an old show I used to watch called McGyver (the spoof or movie is called McGruber). I don't know if I was just in a silly mood or what but a couple of scenes had me laughing so hard I was in tears! When the movie was over I went to the bathroom and was still laughing my ass off as I was whizzing, ha! I recommend it to anyone who used to watch that show and has a silly sense of humor.

Anyway, it's now after 1:00 a.m. and thinking I'm going to be lucky to get a "nap" in before I have to head to the airport in a bit. I'm going to be a zombie tomorrow and it's going to be interesting walking through the snow in Manhattan on my way to NYU. I've gone through worse when I had my second transplant in Seattle when they had the worst snowfall they've had in 60 years when I couldn't even get my car out of my subdivision! Basically, the whole city was shut down but still managed to get to my TBI (total body irradiation) appointments twice a day for four days and the subsequent high dose chemo days and finally getting my cells back.

Well, I think my eyelids are starting to get a bit heavy and think I'll try and get some sleep here.

If you get a chance, please take a moment to check out my friend Bekah's latest blog entry before she makes it private. I've mentioned this before but she has a way of expressing herself that most of us refractory people can not. You'll find her blog on my blog list under "True Beauty Never Hurries".

Hoping to post some good news tomorrow...

Thursday, December 23, 2010

Christmas Time is Here...


I think I'm finally ready :) I was having a tough time getting into the spirit but now that my shopping is done and I can relax I'm looking forward to spending time with my family again and eating some Polish food!

I also wanted to move that last depressing post down a notch as I was told by a few people that it made them sad and I don't want to do that, especially this time of year.

Had a chance to hang out with my cousin Jeff yesterday who's in from Hawaii and it was good to catch up. My buddy Mike who I grew up with and was roommates with in Socal is going to be moving to the big island in January so I have two people to visit/stay with out there now, awesome! Jeff was telling me how beautiful the big island is and showed me some pictures of these incredible beaches where they have green sand! He was also telling me he's got this secret spot near where he lives where you can go out into the ocean around 7 a.m. and swim with dolphins with no one else around! I guess it's not quite a secret spot actually as he said tourist boats start showing up around 8-9. Anyway, it's something I've always wanted to do and I'll be saving my cash to make the trip out there hopefully soon.

It's kinda crazy as not only are the days winding down to Christmas/New Years but my 40th birthday as well! I remember when I relapsed after my stem cell transplants and thinking that I probably wasn't going to make it to 40 so I guess you could say this is a big one. I'm going to do my best to make sure it's memorable as usually my birthday sucks being January 5th, right after the Holiday's and New Years where everyone is burnt out, broke and over being festive. The plan is to start here with friends and family then continue down in Florida as I'm due to fly back down on the 6th.

Anyway, time to go down for a snooze and try and get some energy to clean up my place and wrap some gifts.

Cheers everyone!

Chris

Wednesday, December 22, 2010

Insomniated

If that's even a word...

For some reason, my mind has been racing all night. Of course, it's 3:20 a.m. and I can't get to sleep even though my sheets, comforter cover and pillow cases are all nice and freshly washed (I'd have to say this is one of life's simple pleasures, clean sheets!). At least it's not my back that is keeping me awake :) Knock on wood but it's been feeling pretty decent the last week plus...

I was just trying to make heads or tails of all the Medicare Part D prescription plans and there's so much to consider, ugh... I think what I might do is go to a CVS and talk to one of the pharmacists there to see what their experience is with the different plans. I've also put the question out to my Hodgkins Forum and hope to get some good responses. I believe I have until the end of the year to sign up so there is a little sense of urgency here...

I started playing my guitar again tonight and loosely promised myself that I would try and learn one new song per week if possible. Tonight it was Follow You Into the Dark by Death Cab for Cutie. Always thought it was a beautiful song and the chords and rhythm are pretty doable. I recorded a song on my phone earlier that I've been playing for a long time, Neil Young's "Old Man" although I think I ruined it by trying to sing along, ha! It's pretty cool that I can even play the guitar anymore as this time of year last year it was getting tougher and tougher to play with the neuropathy and eventual onset of Guillaine Barre Syndrome.

I've also made a promise to myself that I'm going to start doing Yoga again at least a couple times a week. I just don't get enough exercise and think with the right class can work on my strength, balance and flexibility while hopefully not harming my back.

It seems as if I'm at a crossroads right now and I'm trying to figure out what direction my life is going to take. I need to find a purpose as I feel like I'm going through the motions (as I've mentioned recently before).

I guess you could also say I'm a little lonely lately... I don't ever talk about my social life (and not sure why I'm bringing this up) but it is difficult to find the confidence and desire to build a relationship when you're dealing with refractory cancer. Sometimes I think that I can survive and be happy being single and just having a bunch of good friends but there are other times where I think it'd be nice to share my life/experiences with the right gal... I'm not so sure this is possible with my condition but I guess time will tell.

BTW, I'm due for another scan on the 28th. I think the results of this will go a long way in giving me confidence that I can continue to live a relatively normal life in the short term. I have to say, one of the most difficult things about living with a chronic illness like this is the uncertainty of what things are going to be like next month let alone next year. I have the live in the moment part down pat, it's the planning part that is difficult.

I wanted to talk about politics and the extension of the tax cuts but think I may save that for another post... I will say that it is sad that greed and an unwillingness to sacrifice a couple of percentage points (by those who can totally afford it) is going to continue to increase our deficit. What happened to all of this talk by the new party in power (in the House of Representatives) and the commitment to reduce the deficit? I have such disdain for the hypocrisy and lies of politicians but for some reason can't seem to tune it out! I had thought a couple of times about starting a blog with just my political views (as I have many) but who in the world would want to read that crap right?!

So for now, I'll just continue to share my thoughts on this living with cancer odyssey while sprinkling in some other tidbits here and there.

I think it's time for me to try and get into the Holiday Spirit!

Only a few days left until Christmas, where has the time gone?!

Feliz Navidad :o)

Saturday, December 18, 2010

One more day..

One more day in Florida then it's on to Christmas festivities back home. It's been a fun week and will definitely look forward to coming back :)


For a second or two, I was Delray's finest, ha! Tryst on Atlantic Ave. Delray Beach


Pretty wild shot of the huge Christmas tree on Atlantic Ave in Delray Beach


Just like last year, plenty of Christmas cheer here!

Monday, December 13, 2010

Cool Sunshine!

It's a little chilly by Florida standards but I'll take it! I mean, it's at least 50 degrees warmer here than what I just left in Michigan so I'm not complaining... Considering I was shoveling snow at 7:30 this morning and tomorrow will be doing something outside in the sun life couldn't be better!


In three hours I went from this (looking out my front window in Ferndale)


To being able to swim in this right across the parking lot! I'm a lucky guy ;)

I was just thinking earlier on the plane about the sun... I know I've written about this before but can't get over how much of a mood booster it is! Us Michiganders and people in general who have to deal with a cold dreary winter are pretty damn tough people. Life is so much tougher when you have to deal with the cold, snow, salt, wind, gray skies, gray everything, icy roads, I could go on and on. Simple things like going out to get your mail, carrying groceries in from the car, scraping the ice off of your car, taking the garbage out, etc. are a challenge in a harsh northern winter. It makes me appreciate how much easier life is in the warmish weather and how much brighter (literally) daily life is when it's warm and the sun is shining :) Have I mentioned how blessed and lucky I am to be able to come down here and "heal". Gol-ley as my friend Elise likes to say!!

By the way, I wanted to also point out another bone head move on my part, ugh. I mentioned and thanked the Reeds a few days back for their generous gift. The part I didn't realize is they are the same Reeds as in the legendary Mike Reed (I believe) that has been battling Hodgkins for the last 11 years! I just caught up on his blog (and created a link on my blog) and found out Mike is currently doing Bendamustine chemo and noticing some great results on it (70% reduction!). Mike is truly a warrior and a hero and I'm even more honored for the gift, thanks again guys.

So, the plan is to get as much R and R down here as I possibly can. What that entails I have no idea. Just going to go with the flow :)

Chaka,

Chris

Sunday, December 12, 2010

Major Relief

Wow, what a difference! I don't know if it's the SAHA/Niacinamide or the Naproxen (prob a combination of both) but my back is feeling much better!

Just sitting here relaxing watching my pathetic Detroit Lions. I was supposed to go to the game as my buddy had a free ticket but it fell through thank God. They just showed a clip of the Minneapolis Metrodome roof caving in and it was pretty crazy. Thankfully the game wasn't going on when that happened. I guess they're going to play the Monday night game between the Vikings and Giants here in Detroit tomorrow night. I wonder how all the fans are going to get here? I think I need to investigate that one a little more.

Well, I couldn't have picked a better time to go to Florida! It's snowing like crazy here and the roads are a mess. Can't wait to soak up some sun!

I wanted to send out some good vibes to my new friend Tiffany who's in the hospital recovering from her stem cell transplant. Go Tiffany!

That's all I have for now, this game is making me sleepy and think I'm going to go down for a nap, ahhh!

Happy Sunday :)

Saturday, December 11, 2010

Can finally breathe easier...

So I went to a local lab today for another blood draw and thank God my platelet count came back at exactly 50,000, what a relief! I've been on pins and needles not knowing if I'd be able to continue on this trial as sketchy and uncertain it has become. It's crazy to think that I've pinned my hopes on something that I don't even know is working anymore but such is life living on clinical trials. What I do know is that I can take Naproxen again and that combined with the SAHA/Niacinamide seems to greatly reduce my back pain. Can't tell you what it's like to wake up in the middle of the night with the kind of back pain I was experiencing. It was to the point that no matter which way I laid in bed it felt like I had a knife in the middle of my back. Yet, I was so tired from the pain meds I couldn't get up. Pretty uncomfortable conundrum but hopefully tonight I will be able to sleep all the way through and start fresh tomorrow, yay!

So, off to dreamland I go hoping I can stay there until the morning.

Thanks for the support :)

Goodnight

Thursday, December 9, 2010

Somewhat under control

Well, I've gotten on top of the pain but unfortunately my platelets didn't cooperate today after two blood draws and running up and down 7 flights of stairs. Since I've been on the trial for 11 cycles now and have had a history of low platelets, Dr. Zain was nice enough to let me bring the pills back with me. The only thing is I can't take them until I go to a local diagnostic center and get my blood (platelets) checked.

So, the plan is to go tomorrow to this place in Royal Oak and hope to God that my platelets go up. I was at 46,000 and 42,000 (the normal low range is 150,000) and need to be at least 50,000. I've had this cold virus and had taken some penicillin both of which I was told lowers platelets. I'm hoping one more day with the virus weakened and another day for the PEN VK to get out of my system and I'll get to 50,000. This would be huge on two fronts: one; I can take the SAHA again which seems to control the pain and two; be able to take Naproxen which works great in conjunction with the heavy pain meds and allows me to take less of those.

I just want to get right before I leave for Florida on Monday.

I think things are going to be alright ;)

By the way, I wanted to send my deepest thanks to April, Trent and Mike Reed and also my old friends Doug and Fran from Mania Interactive for your generosity. I feel really blessed today despite all of the B.S... :o)

I also wanted to mention a loyal commenter on this blog and friend Loraine who lost her son Chris from Hodgkins complications. I was talking about friends who lost kids to this stupid disease and failed to mention Loraine, sorry. If I've missed anyone else, I'm sorry, my memory definitely isn't as good as it used to be...

Crazy Back Pain

I just wanted to document that it's 6:30 a.m. here in New York at the Hope Lodge and I've just been awaken to the worse back pain I think I've had yet. The pain is so intense, I'm having trouble breathing. This is really scary. Maybe it's because this bed is softer that what I'm used to or the fact that I was sitting for so long yesterday at the airport with a delayed flight plus sitting on the airplane but this is ridiculous. I just took two pain meds hoping it can cut into this pain a little before I go get my platelets checked and can take a couple of Naproxen.

I don't think I can endure this much longer... Question is, should I do another cycle of this SAHA/Niacinamide or let my body continue to "dry out" the required 30 days and try and find another trial asap.

A nice person commented on one of my previous posts that RAD001 is open in Tennessee and since it's a national trial am wondering why Dr. Ramchandran would have told me it's no longer available in Detroit. I think I may have to do some pushing here...

Anyway, sorry for the rant but I've got to release this pain somehow... I'm also really scared that my spine is going to crack or something. It feels like my back is ready to snap in half or something. This is surely no way to enjoy life... I'm going to demand some answers from Dr. Zain as Dr. O'Connor seems to not be in again today.

Please wish me luck...

Monday, December 6, 2010

Keeping Warm

Wanted to update from under the blankets, the windows in this house are shot and it's freezing in here! Just finished watching fellow Wolverine alum Tom Brady carve up the cocky New York Jets in surgeon like fashion. What a life that guy has! Not only is he a future Hall of Fame quarterback, he's got the looks (married to one of the most beautiful women in the world), is a millionaire many times over and is just wildly successful in pretty much everything he does. Despite all of this and most impressively, he seems to be a genuinely good guy in this day of narcissistic, self indulged overpaid athletes. Good for him...

Believe it or not, I'm still fighting this bug, ugh! I've heard some people have had it for three weeks so I'm hoping that it's on it's last legs. The fatigue from the SAHA and effects of this cold are pretty debilitating. I managed to start some Christmas shopping today so I don't feel entirely useless ;)

I feel really bad for baby girl Chili :( She got her paw caught in a trunk the other night... I didn't see it happen but heard her yelping and from there it's kinda fuzzy. Had to rush her to the emergency where she was x-rayed and determined to have a fracture of her metacarpal and a severely bruised paw. She was in quite a bit of pain the first couple of days but seems to be doing better. It's funny watching her hop around with that cast on! She doesn't want to put any pressure on it so she's pretty much a three legged dog these days. Chili's always been pretty good on three legs though (she's got amazing balance when she scratches her nose with her hind paw; it's pretty impressive not to mention she does the "tri-pod" when she has to tinkle. The part I worry about is she's started to chew the top of the cast and somehow I've got to get her to wear the thing for 4-6 weeks! Maybe I'll put some hot sauce on it or something if she keeps munching on it, (just kidding ;)


At least they gave her a holiday cast!


She was pretty miserable though :(

Even though I don't have kids, I can now imagine or understand the pain a parent must have when their kids get hurt or sick (at least I would think most parents). It was such a helpless feeling when for the first two nights she would just wimper and cry. I couldn't get any sleep knowing how uncomfortable she was.

I have some friends from my Hodgkins Forum who lost their kids (Alison who is Adrienne's Mom and most recently Sharon who is Mike's Mom). I can't imagine what they went through (and still going through) while their kids were sick and then passed . I can't imagine what my Mom has gone through watching (and actively participating) in both my sister and my struggles. She's a pretty strong woman...

So, I leave for New York this Wednesday for the required blood work and doc visit. It's been determined that I can't stretch my visits from 3 weeks to 6 weeks as Dr. O'Connor wants to scan me again on December 28th. I was so looking forward to not having to go to New York in the middle of the holidays but it is what it is I guess. At least I'll know if I'll be staying on this treatment or having to start something else for 2011. I of course would like to keep going with this treatment as I've pretty much gotten used to it and have had some minor success with it but something is telling my my SAHA days are numbered. I can really feel the disease in my back lately... The nice thing is I don't have any "B" symptoms like itching, weight loss, fevers, night sweats, etc. so maybe there is a chance I can continue. I realize it's out of my hands though so I'm just trying to roll with whatever happens and make the best of it. The only thing that's a little troubling is my planned next move, RAD001, has pretty much filled up and won't be opening the next phase until the spring sometime. I guess I'll cross that bridge when I get to it (not to sound too cliche).

For now, the plan is to enjoy the holidays and my little Florida getaway starting next week!

To my Jewish friends out there, Happy Hanukkah!

Chris

Wednesday, December 1, 2010

Feeling Better...

Well, I'm cautiously optimistic that whatever it is that's been wreaking havoc on me is on it's way out. I've been taking anti-biotics and they seem to be helping. My head doesn't feel quite as underwater as before and most importantly, my cough isn't as bad although it's still there.

Thank you to those who have offered up encouragement and advice :)

Cheers,

Chris

BTW, I just was notified by my friend Lee (who's a Glioblastoma survivor) that he started a new blog, "One Quarter Blind". Please check it out on my blog list if you get a chance. Go Lee!!

Can't forget my cousin Ken who started a blog regarding his post experience with prostrate cancer, focusing on humor and awareness. The evolution of dance clip from You Tube is classic Ken!

Also, I wanted to report that I received an email today from an administrator from the "Navigating Cancer" site. I'll let Becky's message speak for itself:


Hi Chris -

I want to let you know we found your blog post "Reflecting" very inspiring. So much so we included it our Navigating Cancer blog roundup last week. I've enclosed the link for you to take a look if you like http://www.navigatingcancer.com/blog/cancer-blog-round-up-november-24/

Have a good day Chris!

Becky Walker
Navigating Cancer


It's nice to get noticed sometimes! ;) Not to mention, my friend Kirsten's made it on there too, go Kirsten!!

Monday, November 29, 2010

Back to Basics


Well, it didn't take long to find some serenity... I'm going back to basics and one of my favorite Buddhist teachers, Thich Nhat Hanh. I remember reading a few of his books when I was first diagnosed and how calming they were. It's important for me to remember to be mindful as I've been getting caught up in the fear of being sick (and this developing cough).


Here's some of my favorite quotes:

“Live your daily life in a way that you never lose yourself. When you are carried away with your worries, fears, cravings, anger, and desire, you run away from yourself and you lose yourself. The practice is always to go back to oneself.”

“And once we have the condition of peace and joy in us, we can afford to be in any situation. Even in the situation of hell, we will be able to contribute our peace and serenity."

"Waking up this morning, I smile. Twenty-four brand new hours are before me. I vow to live fully in each moment and to look at all beings with eyes of compassion."

"The kingdom of God is available to you in the here and the now. But the question is whether you are available to the kingdom. Our practice is to make ourselves ready for the kingdom so that it can manifest in the here and the now. You don't need to die in order to enter the kingdom of heaven. In fact, you have to be truly alive in order to do so."

"When we walk like (we are rushing), we print anxiety and sorrow on the earth. We have to walk in a way that we only print peace and serenity on the earth... Be aware of the contact between your feet and the earth. Walk as if you are kissing the earth with your feet."

"Know that life can only be found in the present moment."

— Thich Nhat Hanh

Of course, I'm hopeful that whatever it is that's festering in my body (hopefully just a bug) goes away quickly and I can get back to feeling relatively well. If not, I'll be going in to see Dr. Ramchandran asap so we can put a plan together to get me back on track. If it's the disease growing that's the cause of this, I'm sure there's something out there that can bridge me until I find another clinical trial.

Looking forward to a new day tomorrow :)

Sunday, November 28, 2010

Under the Weather...

Ever since Thanksgiving, I've been struggling a bit. I either have the flu or a chest/head cold that I can't seem to shake. I thought it was on it's way out today but here I am in bed typing this and my head feels woozy and I'm totally stuffed up, ugh. Hoping this starts resolving by tomorrow...

I'm hoping it's just the weather changing here (it was pretty cold this weekend). My place is pretty drafty too, even Chili has been jumping up on the bed lately at night probably because it's colder down on the floor!

This is a weird time of the year too with how it gets dark so early, I think I miss the summer already!

It just struck me as I search for something else to say here that my life has gotten kinda dull and predictable lately... I think I need to start a new hobby or something, I feel like I've been thinking about the cancer a little too much lately. Distractions (especially good ones) are always helpful in this regard.

We'll see what I can figure out this week.

I've ordered copies of my latest PET scan to be sent to Karmanos so that the radiologist there can take a look and consult with Dr. Ramchandran to make sure I'm getting the full story from NYU. I think it's in my best interest to get an opinion on the latest bit of growth from someone who doesn't have a stake in the clinical trial. I don't know if it's the body aches from the bug I have but my back was really sore yesterday. I've also been having a really difficult time with my hands locking up the last couple of days. I have no idea if any of this is related but like to write it down so I can go back if I have to.

I think the warm weather of Florida is really calling my name right now... I'm supposed to go back down for a short trip December 13th. Looking forward to it. Until then, I have my scheduled trip to New York on December 8th. Not really looking forward to that one for some reason.

Time to hopefully get some good sleep and let me body fight off whatever it is that's wreaking havoc on my head right now.

Goodnight :)

Thursday, November 25, 2010

Thankful...




Just had a nice evening at my Mom's with the family to celebrate Thanksgiving :)
The food was awesome as always and everyone was in a good mood. Unfortunately, I couldn't stay as long as I wanted because I was so tired! I had one glass of wine and it wiped me out (plus the turkey probably had a little bit to do with it, ha ;) No matter, it was great to catch up with my cousins, aunts and uncles and family on Rich's side, plus my sisters boyfriend, Carl.

I was asked to say grace at dinner and I wasn't really prepared to do it! I really can't remember what I said but was hoping to express how thankful I am to have family surrounding me (and friends and other family members who weren't there) who sincerely care for me. I also wanted to say how thankful I was for all of the good times that were had with members of family that are no longer with us. I also wanted to say how thankful I am for the awesome life we get to live as American citizens and for each precious breath that we take in this precious life...

Happy Thanksgiving!

Chris

Friday, November 19, 2010

Official Report is in...

So, I just opened and read the official dictation of my PET scan and it's pretty much what I expected it to be. 4 out of the 5 "targeted areas" or lesions have increased in size and metabolic activity. I only used to have 4 areas but it looks like the cervical node that popped up a few scans ago is here to stay. I guess I'm kinda numb to it right now as I'm pretty calm (thank God for Attivan). It is concerning any time the cancer is getting "bigger" though. Dr. O'Connor wasn't there and I saw Dr. Zain. She mentioned that disease tends to "wax and wane" on this drug so I'm hoping that it'll start waning again on this cycle or I may have to start thinking of other options. We didn't discuss when we're going to scan again but will find out when I go back on December 9th.

Another troubling thing on the report that I need to investigate is; "Evaluation of the visualized skeletal structures demonstrates slightly increased cortical erosion/remodeling at the paraspinal regions mentioned above (where most of my disease is). It sounds like my bone or spine is starting to erode, ugh...

The plan for now is to try and enjoy the weekend (I miss Chili and can't wait to pick her up from my Moms!). On Monday, it's back to business as I'm going to forward the report to Dr. Ramchandran here in Detroit and see what his take is on it. I also need to contact a specialist for my back to make sure the eroding spine thing is being handled. It sucks because I'm not approved yet for Medicaid and have to cover the 20% of of my medical bills that aren't covered by Medicare. I did receive a letter back from DHS though and hoping I can get the Medicaid pushed through quickly.

I've written in the past how dealing with cancer is a 24 hour a day 7 day a week job. With this kind of crap, it feels like I have to work overtime as ridiculous as that sounds...

My spirits are surprisingly pretty good right now though so I'm just gonna keep rolling along and enjoying life the best that I can as always.

I've got big plans!!

Thursday, November 18, 2010

Good News Bad News

So, just got up to my room finally after starting my day at 4:45 a.m. I flew in to NYC, got to NYU, had my PET scan and waited for the results. Dr. O'Connor wasn't in today so Dr. Zain came in and reported that they're going to keep me on the trial (good) but the targeted nodes that they have been watching have all increased slightly in size (bad). I don't have the official report in hand yet so I'm going to refrain from getting into too much detail. Bottom line is I'm a little dissapointed after such a positive visit last time and all the talk about a partial or even complete remission, ugh...

Anyway, I guess I'm used to this kind of news and shouldn't get too caught up in what might have been. I'm still feeling relatively well (although a little wounded mentally). It would just be so nice to hear the words remission for once...


Once I receive the report, I'll do another post and share the results along with my feelings on it. Right now I'm going to go meet some friends in Manhattan and try and have a fun evening.

I guess you can't always get what you want...

Sunday, November 14, 2010

Reflecting

Just laying here watching the game and was just reflecting back to the last time I was here in Florida. My mental and physical well being were in such a different state... I was just regaining the normal use of my hands and legs and was always exhausted. I remember simple things like walking across the parking lot to the pool or trying to get my keys out of my pocket and unlocking my door were a major challenge. I remember struggling to walk down to the beach, having to basically "fall" to the sand to sit and barely being able to get back up. I also remember trying to keep up with this blog even though I had to type with one finger because my hands were useless. I've come a long way since then, thank God!

Because of this, I'm in such a better place these days. Life is so much more enjoyable when you can physically suck the marrow out of it. I remember being on SGN-35 when the severe muscle aches started. Then came the slow then sudden onset of Guillain Barre Syndrome. I remember thinking of ways to live with all the discomfort and pain... I was devising ways of being able to "live in my head" if that makes any sense as I thought I would have to live like that until my days ran out. Honestly, now that I look back, I think I was pretty depressed.

While things are far from perfect physically, I am doing so much better these days. I just hope that this can last for a while... What would a reasonable amount of time be? I really can't say. Dare I dream that this would last another six months? How about a year? It's very difficult to not get too caught up in feeling relatively well knowing in the back of my mind that this treatment has an expiration date and I'll eventually have to roll the dice on another clinical trial. I need to start reading my Buddhism books again to remember to live in the moment!

I can say though that at this moment, life is pretty darn good. I'm going to try and thoroughly enjoy my last few days here while mentally preparing for my upcoming scan this Thursday in New York.

One day at a time ;)



My buddy Danny and his wife Celia. Danny's work finally made it into a gallery! He has a friend that opened Village Studio Gallery on Atlantic Ave. in Delray Beach and he's one of 4-5 featured artists. It's going to take some time for word of mouth to spread but now that it's in season here foot traffic will be increasing and hopefully they can sell some art... Here's the link to the gallery if you want to check out some of the artist's work. http://villagestudiogallery.com/




Mike, one of the artists was doubling on the keys!



I've been dreaming of rolling up to the beach in a convertible for a long time and now it's reality! Pretty cool...



Traveling Jesus and I having lunch at my favorite spot!

Thursday, November 11, 2010

Made It!




Got an internet connection finally and just wanted to say I made down to Soflo in one piece! The Bimmer ran like a champ and it was a fun drive. The colors are still changing down in Tennesse and Northern Georgia, very nice :) As I gassed up in Florida for the last time, I decided to take the top down and do the final leg "topless", ha! I have to say, it was one of the most satisfying (almost spiritual) experiences I've ever had...

Also had a chance to visit my good friend Anastasia in St. Augustine who happens to be a Hodgkins survivor (sorry and thanks for the permission Anastasia ;) Happy to report that she's still in remission and has moved on with her life...



It's so nice to feel the sun on my face again, ah!

Life is good :)




For documentation purposes, wanted to note that my lower left shin is itching something fierce and the itch seems to be coming from under the skin, classic Hodgkins type itch, ugh. Going to keep my eye on it...

Monday, November 8, 2010

R.I.P. Mike :(

Just wanted to send my condolences to my friend Sharon who just lost her son Mike today to this f'ing disease. Mike was a hero of mine and I'm really sad to hear of his passing.

Here's a link to the Hodgkins Lymphoma board I'm a part of and a beautiful post by Mike's sister who also happens to be a Hodgkins survivor.

http://forums.lymphoma.com/showthread.php?t=48440

This is pretty tough news to deal with and with that said, I will appreciate life even more starting tomorrow as I head down to Florida with a heavy heart...

Chris

Sunday, November 7, 2010

Migrating South

Just wanted to check in after what seemed like a long Sunday (if only by an hour). I watched my Lions once again snatch defeat from the jaws of victory, ugh...

I'm getting excited though as I'm going to attempt to leave tomorrow for Florida! It all depends if I can get all my stuff done here in time and if not will be leaving on Tuesday. I've got the Bimmer running like a champ after getting the rear wheel bearing replaced. It's like night and day as it was really vibrating before. I've had a couple of different people look it over for me and have been given the thumbs up both times thankfully. Still, I'm a little nervous driving a car with 300,000 plus miles on it from Michigan to Florida. We'll see what happens!

Life has thankfully been pretty uneventful lately. I'm still feeling relatively well and even went for my first run (actually a really slow jog) in a long time earlier this week. It was only around the park across the street (probably a mile) but it felt great and I had decent wind. I want to start doing more of that to try and keep my lungs strong. I think I'll start riding the bike and swimming once I get down to Soflo if my body allows it. I can't wait to swim in the ocean again!

I wanted to send out some good vibes to my cousin Rodney who I just found out a couple days ago was diagnosed with what else, Hodgkins Lymphoma, ugh. My family has a history of cancer but two of us now having HL is pretty strange knowing how rare the disease is. I know things will be ok for him though and wishing a drama free treatment out there in Vancouver BC.

That's pretty much all I've got for now, I'll probably update from the road or once I get down to Florida.

Sunshine, here I come!

Monday, November 1, 2010

Checking In...

Just sitting here watching some of the coverage prior to tomorrow's election and wanted to catch up...

So, it looks like the Republicans are going to take control of the House and the Democrats will probably hang on to the senate although there's an outside chance that may flip as well. It's so crazy how quickly the political tides change. I'm still in shock that our country is poised to give control back to the party that steered the country into the recession. What's going to be different this time? I've been paying attention lately and I really haven't heard any novel ideas by the GOP. In fact, Mitch McConnel, (the now minority Republican Senate leader) said the #1 goal of the GOP for the next two years is making sure Obama doesn't get re-elected. That doesn't sound like responsible governing to me.

I guess with things still pretty bad out there with housing and the job market and only slowly getting better, someone has to take the blame and in this case it's the Democrats. I think the health care legislation was the nail in the coffin. It created a perception that Obama and the Democrats weren't interested in fixing the economy but a political feather in their cap with the new Health Care Bill. This combined with the fact that the Bill isn't very well conceived (and probably needs fixing) and you have a recipe for disaster for the party in power who passed the legislation.

My hope is that instead of more gridlock, perhaps for once the two parties can work together to continue to try and fix the economy and improve the shortfalls of the new Health Care Bill. Locally, I'm hopeful the guy I'm voting for governor, Republican Rick Snyder, is going to be the inclusive leader he promises and helps to get Michigan out of the dumps. I think Independents like myself (which comprise the majority of American voters) want our government leaders to work together and find common ground in the middle. As I think about it though, it probably will never happen. With as large as this country is and with so many different viewpoints (for example the lens which rural America looks through as opposed to an inner city view) there's always going to a clash of ideals. This really struck me when I was in Holland. It's fairly homogeneous there and the population is relatively small so people can find common ground much easier (and as result have a much more harmonious society than we do here).

Anyway, I have a ton more to say on the elections tomorrow but think I'll just let the results speak for themselves. I will be very interested to see what comes next...

In a somewhat related note, today is my official first day without having private health insurance as I've taken the forced lunge into Medicare. I have to go apply for Medicaid tomorrow so I can hopefully supplement the 20% of my medical costs that aren't covered my Medicare. I feel fortunate that I'm feeling relatively well as I couldn't imagine having to deal with this crap if I was feeling like shit.

There is light at the end of the tunnel however as I'm getting ready to drive down to SoFlo next week! I'm really nervous but I'm going to be attempting to drive my convertible (and the 300+K miles it has on it) down there. I'm taking it in tomorrow morning to have the rear wheel bearing replaced and hoping everything else is going to be solid enough to get me there. I've already had the timing belt replaced and have been told that the engine in the car I have (BMW E30 325i) can run for 1,000,000 miles!! I have a feeling there's going to be some interesting blog material made on that trip but of course hoping for a boring uneventful journey. I'm really looking forward to some warm sunshine again...

To unfortunately close on a sad note, it looks like my fellow Hodgkins Warrior Mike from St. Clair Shores is going to ride off into the sunset, hopefully peacefully. His mother Sharon sadly reported today on our forum that the family has decided to call in Hospice rather than deal with the inevitable ventilator. I guess his body has been through one too many treatments and the cancer is no longer responding to any of them. My heart and prayers go out to the family.

I also wanted to send some good vibes to my friend Kirsten out in Vancouver. She's really been struggling lately after finishing up 6 cycles of Bendamustine and doing a single treatment of Vinblastine which really threw her for a loop. I hope you're back on your feet soon Kirsten and rooting for you here in the D!

That's all I've got for now; thanks again to Marie, Jim and my Godmother Aunt Shelly and Uncle Butch for your generous gifts :) I am a very blessed...

Good night everyone and good luck :)

Thursday, October 28, 2010

From New York with Love

Well, just sitting here in bed at the Hope Lodge feeling like a zombie... I haven't been able to sleep the last couple of nights and thought I'd goof around with my blog. I can't wait to get my pills so I can take some Aleve (Naproxen) and get a good nights sleep. I can't take the Naproxen for 5-6 days prior to my New York trip as it causes my already low platelet count to go down even more threatening my ability to stay on the clinical trial. Only a couple hours left until I take my walk up 34th ave. passing the Empire State Building to NYU Langone, yippee!

So, as you probably noticed, I did some sprucing of my blog. It's pretty cool how Google provides tools to customize this thing. I am far from a computer guy and have to say the tools that are provided makes it seem like I know what I'm doing, ha!

I've added a counter at the bottom of the page which shows total number of page views. I was a little shocked to find out this blog has been viewed almost 10,000 times, wow!

Also, this is a little embarrassing but I've finally broken down and put a link up for donations to my clinical trial travel fund. It's tough having to travel to New York every three weeks living on disability. I'm looking into things that will supplement my income but have to be careful not to jeopardize my eligibility for Medicare (and hopefully Medicaid). My situation (or anyone who will have to fight cancer for the rest of their lives after losing their job) is difficult in that I would like to go back to work if I could find a job but who is going to hire someone who has chronic cancer (especially in this economy)? Not to mention, what insurance company is going to carry me? The laws against discriminating against pre-existing conditions don't kick in until 2014. So, for me to go back to work, I'd be taking a huge gamble that quite frankly I can't afford to take.

That said, I am managing ok for now and know that I will continue to manage. I have also been blessed to have such a generous family (thanks Mom and Rich and Karen for the recent gifts :).

Well, I think I'm going to try and shut my eyes for an hour before I have to leave.

I hope everyone who reads this has a fun Halloween (if you celebrate)!

Quick update:

Just got back and my platelets were just over the threshold (51,000) and I can continue on the trial. Dr. O wants to scan next visit and if things are continuing to shrink, he mentioned that I can petition to stretch my visits from every 3 weeks to 6 weeks which would be great. I'm also going for the record of 13 cycles! So far, this will be my 11th. Dr. O said this trial has totally exceeded his expectations and even got cocky by saying this is going to make him "even more famous" and it's going to be even tougher to see him... I guess every doctor has a narcissistic side and as long as things keep going the way they're going, I could honestly care less!

Monday, October 25, 2010

Prayers for Mike

I just wanted to solicit prayers for a fellow Hodge Warrior who happens to live not too far from me in St. Clair Shores. His name is Mike and while I have never met him, I've had the pleasure of corresponding with his Mom after meeting her on our Hodgkins Lymphoma board.

Mike isn't doing very well right now... He's been fighting Hodgkins since 2002 and has had tried more treatments than anyone I know. He's had to travel to Chicago and Minnesota for clinical trials and suffers from chronic pain in his back as he has spinal disease like me. Unfortunately, because of all the treatments Mike has endured, his blood counts are also chronically low requiring constant infusions of blood products. Because of these low counts and suspicion of disease spreading he's been taken off his latest trial, RAD001, the one I was looking into next if/once the S@N stops working. Mike is currently in ICU and his Mom reports he is almost incoherent and being made to wear mittens so he doesn't pull out his IV's. She didn't mention if they have a plan yet to try and beat back the disease which is a culprit in his downturn. I sure hope they do as Mike has been one of my heroes ever since I joined the forum and especially after finding out I was refractory.

It's so hard to sit here and know this is happening to a comrade and could very well happen to me at some point. I know I speak for all my fellow Hodge Warriors when I say this. We are all happy and inspired to hear that someone is doing well but at the same time feel sadness when hearing about one suffering.

Please join me in praying/hoping for Mike and anyone else who is dealing with this messed up disease.

Thanks, Chris

Thursday, October 21, 2010

Dank je wel Amsterdam!





Me and my buddy Sean (aka Tubbs) sitting in first class to Amsterdam! Sean works for Delta and hooked up tickets for almost nothing...

Day 1

This is unbelievable! I’m sitting on this big ass jet heading to Amsterdam in first class! I’ve never flown first class before and I feel like royalty. These seats are amazing! I have my own entertainment system, with movies on demand and watching this great flick called Cyrus. I just finished a gourmet meal of beef tenderloin, shrimp scampi, snow peas and this sweet creamy risotto which was one of the tastiest things I’ve ever eaten. Prior to this, they gave us these seasoned artichoke hearts, smoked salmon, something else that was like a potato with delicious seasoning along with squash soup. And right before the main course, brought out a nice field green salad with yellow peppers, blue cheese, walnuts and balsamic vinaigrette. For desert, it was cheesecake with chocolate and strawberry topping. They served all of this with a delicious Malbec red wine. I’ve always wondered what it was like to sit up in first class and to think I’m doing this for $150 (Sean said this ticket may be upwards of $6000 if we had to pay!) He can do this whenever he wants to wherever he wants on the drop of a hat, not a bad perk. Hoping he can hook up another trip, talking about Argentina or Thailand, we’ll see….

So, since I don’t have internet connection for the rest of the trip, I’m going to try and chronicle the trip sequentially on Microsoft Word then cut and paste...
It’s 10:30 and by the time we get there, it’s going to be the next morning so time to take my pills and try to get some sleep. I don’t think it’s going to be that tough as this seat reclines completely flat, I have a pillow and blanket not to mention a lumbar massage feature on the chair that just rolls up and down my back right where my disease and herniated discs are located, ahhhhh. I can’t imagine life being any better right now! This is going to be a great trip :D

Last day:

Ok, back here on my last day! Been going pretty much nonstop except for naps and it’s an early night tonight so I figured I’d bust out the recap ;)
Overall, it’s been a total blast  Amsterdam is a visually beautiful, thoughtful wonderful city. The food is really good everywhere, there’s a ton of things to do and the people here really have a great time. Unfortunately, the locals’ view of Americans isn’t exactly positive. Sean and I investigated to try and find out why this was and the predominant response was the whole war thing (mainly Iraq). I think there has always been some disdain of American politics here but with that said, American culture is everywhere you look, crazy. There’s tons of McDonalds, Burger Kings, KFC’s etc. and of course the American pop culture like music is pretty strong. Still, the people just seem to be stand offish (word?) and we tried to make friends with other tourists which proved to be a good strategy thankfully. Me and Sean actually met some friends at the Anne Frank museum (which was interesting) and hung out with them on Sunday night.


Funny, I'm almost positive this band is from Detroit!!


Some friends we met from Australia, taken at the Little Buddha which is a really cool place


Having lunch at one of the many outdoor cafe's



Of course there are some elements of Amsterdam that are pretty striking and quite different from what we have in our major cities. This brings me to the Red Light District. I had heard about it several times and pictured a seedy, dirty place but was surprised when it turned out to be neither of those things. Yes, there are certain areas where there are prostitutes in windows and the smell of marijuana wafts down the streets constantly but never did I ever feel unsafe or sketchy. I did feel weird walking down the thing streets and seeing these young beautiful girls standing in the windows advertising themselves and wondering why in the world they were subjecting themselves to this… But then thought about the Craigslist scandal here in the states where girls are being forced into the sex trade by thugs literally not being able to leave their hotel rooms and being abused etc. I don’t know, I don’t advocate prostitution and sincerely felt sad for these girls but at least they’re not being abused and the trade is tightly regulated. Plus, back in 2006, the city bought back one third of the buildings that were being used for prostitution and required the new business to be something besides prostitution, i.e. a restaurant, bar or my next topic, a coffee shop… Yup, not only can you go in and order a delicious cafĂ©, you can order marijuana from a menu! This trade, like the prostitution trade is pretty tightly regulated and definitely a part of the culture here which I think is one of the main reasons a lot of tourists visit. In fact, the locals were really skeptical when they asked me what I was doing here and my answer didn’t include prostitution or spending all day in the coffee houses. It is really fun experiencing a different culture and saying Amsterdam is different than home is an understatement…


This is the red light district! If you look closely, there are people of all ages walking around and it's not much different than other parts of the city... You see the red lights when you pass some of the alleys that run parallel to the street. The coffee shops are everywhere, even outside the RLD.


All kinds of people walking around the RLD


Inside BABA coffee shop, don't breathe in, haha

One of the coolest things to me is the fact that the main form of transportation here is the bicycle! I actually rented one today to buzz around the city one last time and it was so much fun! Someone said that there are over 100 million bicycles in Holland and I can believe it. It’s pretty crazy though as the locals ride their bikes so fast and you really have to be careful not to get run over while walking around! In fact, I was more worried about getting hit by a bike than a car or tram. When I rented my bike, I really had to get used to it and was constantly getting passed on the paths by the locals ringing their bells at my slow ass! I was thinking to myself as I was riding today how cool it is that they ride bikes everywhere as the air is so much cleaner, they’re not dependent on oil from terrorist countries and there’s a certain aesthetic beauty about people riding around on bikes in such a scenic city with all the beautiful buildings, churches, cobblestone streets and the canals which are everywhere. The canals are a great source of transportation as well and seem like a really nice thing to do with your significant other on a romantic occasion.


Bikes everywhere!!


Taken right across the street from the hotel, notice the almost full moon above the monument


One of the many glass top canal boats in the city...

Anyway, I’ve been able to enjoy this while feeling relatively well except for a couple of bouts of nausea/vomiting (probably from getting my pill schedule a little mixed up because of the major time change) and of course the chronic back pain.

I could really get used to continuing to travel outside the country like this and hoping for another trip to somehow come together soon! Sean mentioned I can use his buddy pass whenever I want so I might plan something soon, say after the holidays.

Thanks for reading this long post and hope everyone is having a nice week :)

Cheers!

Tuesday, October 12, 2010

Back Home...

New York was a blast!! My platelets we're above the threshold so no need to do any stair climbing this time (actually I did, but it was proactively before they took my blood the first time). Dr. O'Connor addressed the nasty back pain on my off week from the the pills by prescribing me a fentanol patch to apply a day before my last dose. Hopefully it works and better yet, whatever it is that's causing the pain decides to go bye bye...

As far a activities in New York this time around, there were some interesting stories. One, involved taking a bike around Central Park. I was trying to rent a two wheeler and there were plenty of offers... However, most required a two block walk to go pick it up and most were over $15 an hour. To my surprise, I came across a woman who offered to rent one to me for $15 for two hours, plus, she had "her" bikes waiting right at the entrance to the park -- score right?! So, I followed her over and she waves to an Islander looking guy and he proceeds to walk the bike over to me. It was a pretty decent Specialized Hybrid and I was happy. I then fully expected to give her my license, a credit card, my car keys, anything for collateral along with signing some type of contract or something. To my surprise again, she required none of these things -- collected my $15 and walked away. The whole thing seemed kinda sketchy if you know what I mean... So, for the first 10-15 minutes, I was envisioning some pissed off bike owner seeing me riding his bike, coming over and beating me over the head with a baseball bat, yikes... There was no way that this was her or anybody in her posse's bike. So, after the threat of that faded, I had a nice relaxing stroll around Central Park and probably could have taken it to my next destination but my morals and the need to preserve my Karma wouldn't let me! I figured out how to get back to where the transaction went down and fully expected nobody to be there but sure enough, there was the woman with a look of surprise on her face. As I was getting off the bike to hand to her, she shocked me by saying "are you sure you don't want to keep the bike"?!! I just nodded my head and got the heck out of there, crazy...


Me at Central Park with the mysterious bike!



Ah, drink it in!!!

So, from there, it was off to the MOMA which was really great. It's four levels and while some of the stuff is a little too far out there for me, I really enjoyed the third (photography) and fourth (classic paintings) floors. In fact, I think I must have taken a hundred pictures of all the original Van Gogh's, Picasso's, Diego Rivera's, Monet's, etc... All in all, it was a great day!



You have it all at the Museum of Modern Art, from a huge Monet painting...



To the famous Andy Warhol soup can piece...

Also had a chance to check out a couple of great bars with my friends one of which is in the top three oldest pubs in the city. It's called the EAR bar and was built in 1817. The reason it's called the EAR is because the lights on the curvy part of the B burned out several years ago and they never replaced them! Had a chance too to check out the lower east side which is more of a younger crowd but still a lot of fun.



The "Ear" Inn, est. 1817


So, this week is all about resting up for what I hope is a trip to Amsterdam this Friday. My buddy from Seattle Sean is facilitating the whole thing but there's no guarantees we can go as it all depends on available seats on the flights going out there. Kinda crazy being on standby for Europe but that's how I roll these days I guess!

As soon as I know for sure, I'll make sure to update.

Cheers!

Wednesday, October 6, 2010

Back in NYC!


Just got up to my room at the Hope Lodge and felt compelled to do a quick post...

They have journal books in some of the rooms and as I was setting down my room key, wallet etc. on the desk, decided to open it and this is the passage I opened to, pretty neat :)


If you left click on the picture, it'll blow up so you can read it. I guess that's why they call this the "Hope Lodge"!


So, tonight I relax, watch some baseball (Roy Halladay just pitched a no hitter for the Phillies, wow). Seeing Dr. O tomorrow at 12:45. Hoping my platelets cooperate this time and the SAHA gets to work so I can get some relief from this back pain..


This is my corner! Feels different here now that it's getting dark earlier... I <3 New York :o)

Thanks again for reading!

Sunday, October 3, 2010

Sunday Update

Not a whole lot to say tonight, just thought I'd write a little since it's been a week...

I took my last handful of pills on Wednesday and while I have more energy, my back has been aching something fierce. I've noticed a pattern has developed of increased pain on my off weeks from the pills which tells me that the drug must be doing something. The pain is pretty bad though, bad enough that I can't sleep unless I increase my pain meds, ugh. It is nice though not having to force 16 horse pills down before I go to bed... The pain is in the normal spot, the right mid area of my back. Naproxen also helps but I can't take too much of it because of my platelets being so low. I took two the other night and the next day couldn't stop my nose from bleeding, pretty freaky.

I met with my Neurologist earlier in the week to follow up and see if she could do anything about the cramping in my hands and calves. Just recently, it got pretty bad a couple of mornings. The pain is so intense that I liken it to being shot (although I've never been shot). She wanted to try mild "interventions" first as she called it in having me increase my vitamin D and E intake plus Calcium. She also told me to drink a lot of gatorade type drinks plus tonic water and so far it seems to be helping. Unfortunately, she's determined that I have permanent nerve damage in my feet though as I still can't feel my toes or really bend them for that matter. It's weird, even though they're numb, they're still super sensitive if that makes any sense. She literally could take a pin and poke it into my big toe and I can't feel it but if I step on something or somebody or something (like my dog) steps on them, I feel like I'm going to go to the moon, very weird...

Had a chance to check out "The Social Network" this weekend. What a fascinating movie! If anyone who reads this is on Facebook, you definitely need to see this movie.

I've also had a chance over the week to catch up on my HBO shows on demand, Entourage and Hung and they didn't disappoint. Hung especially stood out as they really stepped up a notch the second season and it's all shot here in the D! Speaking of another show shot in the D, Detroit 1-8-7, I've watched the first two episodes and I'm still trying to get into it. I'm wondering if it's because there have been so many shows of it's kind over the years... I'm waiting for something to suck me in besides the fact that it's also shot entirely in Detroit. We'll see...

I think Gomez is finally over being hit by a car, ha! Him and Chili have really bonded and they've been playing like crazy. It's so funny watching Gomez push Chili's buttons by trying to jump up and bite her ears. Chili just swings around and hip checks him then whacks him a couple of times with her paws. She has amazing paw dexterity! I've gotta say though that little Gomez does not quit! Sometimes he manages to sneak right underneath her and bites her hind paws. I love watching those two go at it! It's harmless and it totally wears the both of them out. I'm going to miss the G man when Jackie comes to town to get him in a couple of weeks :(


Chili and G having their first shower together!


Since they were nice and clean, I had em up on the bed :o)

Anyway, that's pretty much it for now. I leave for New York on Wednesday and will be staying through Sunday. I want to get to some museums this time and thinking of maybe getting into see Letterman. We'll see how things shake out.

Finally, there's a good chance I might be going to the Netherlands on the 13th! My old buddy/roommate Sean from Seattle is back at Delta airlines and out of the blue messaged me and asked me if I'd be interested in going to Europe on one of his buddy passes. So, if everything works out (we're basically on standby) I get to fly (possibly first class) to Europe for $150!! The plan is to land in Amsterdam, explore there and maybe jump on a train to check out Belgium, Germany, Prague, whatever... I don't want to get too stoked yet because it might not happen if the flights are sold out. Plus, I checked my passport and it was expired and not sure if I'm going to get my renewal back in time anyway. Keeping my fingers crossed!

Alright, I'm out for now... Probably won't update till I get back from New York.

Happy Monday!!