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

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...

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

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)

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!

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

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 :)

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

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...

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

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!!