Ode to Chili!

This might be a corny post but I don't care ;)

Well, as crazy as the last few weeks have been, I have to say that no matter what happens, my buddy Chili can always put a smile on my face :) It's amazing how dogs seem to know what you're going through and how nurturing and calming they can be. I used to write a lot about Chili Dog, especially when we went on that month plus road trip around the country. There would be hours on end where I had no cell reception and the only one I could talk to would be her! Have to say, I've spent a lot of time with baby girl... I now realize more than ever how calming it is to have her around. I can't bring her down to Florida with me as I don't want to subject her to the baggage compartment of the plane plus the expense would be huge. She gets to stay with my Mom and the gang in Michigan where she is very well loved and taken care of which I'm grateful for. However, there is a void down in Florida that really just struck me. It's pretty strange how we as humans get attached to our dogs...

I remember watching this documentary on the relationship between Dogs and Humans and remembering how they said that out of all the animals in the world, no other is more in tune with humans than the canine. The bond goes back 1000's of years and it turns out both humans and dogs have physically evolved because of each other. In fact, they mentioned that if it weren't for this relationship (the role of dogs in the lives of humans) we'd all still be hunters and gatherers! (their role over time was to obviously help herd animals so we could start living sedentary lives) In turn, as we relied more and more on dogs, they started relying more and more on us and thus the symbiotic relationship. Of course cats are domesticated but they're in no way as in tune or at attention with humans as dogs are. I remember the narrator describing a computer study of dogs' eye movement as it's owner would present different emotions and how the dog expressed a different eye pattern (if you could call it that) depending on how the owner or human was acting. No other animals have been found that express this unique connecting quality, even dolphins (which are still incredible because they've never even been domesticated).

Anyway, I just thought I'd devote a post to my buddy Chili Pepper as she's always here for me through thick and thin and no matter what, always understands!


For some reason even though her name is Chili, I like to call her Fozzy, as in Fozzy Bear from the Muppet's, ha! She obviously needs a haircut but holding out until right before I leave for Florida again. This time I'm driving down so I can move into my new place there and thought I'd bring her with me. She digs the beach from her days in L.A.!!

So with that, I'm gonna crash out and look forward to a great day tomorrow. I found a guy to do my wood floors Monday at the new house and tomorrow I'm going to be prepping for painting once he's finished (per his request, paint on the oak makes it more difficult to sand). Once the finish is dry, I'll be able to hopefully move in by the end of the week, yeehaw! Moving they say is stressful but in both of my cases instead a symbol of starting fresh and on the road to feeling useful again.

Not to mention and most importantly, a way to keep my mind off the setbacks and a way to look toward the future and good things to come :)

Happy Sunday Y'all,

Chris

Good news bad news...

Well, I must say even with the freezing cold weather and all of the snow, it is comforting to be back "home"... It was quite the task shoveling all of that snow yesterday but thankfully today we didn't get as much as they were forecasting. It is so nice to sleep in my own bed again and be able to take a hot shower! I'm getting ready to go grab Chili so that should be nice too :)

Unfortunately however, I did receive some bad news today regarding the promising RIT clinical trial for EBV positive Hodgkins survivors. Apparently, the tumor block I sent to Baylor tested negative therefore eliminating me from the trial. I'm having a bit of a hard time with it right now but like everything else it'll pass and I'll continue to move forward. Dr. Bollard who is heading the study did say they are working on a vaccine for patients who are EBV negative but not sure if and when that would ever be ready and if so, what the efficacy would be.

So, just going to keep my chin up and keep the faith that the SAHA will continue to work and perhaps something else will come into the pipeline once it stops working.

My skin keeps getting thicker and thicker.

Again, more reason to be mindful of the here and now and squeeze every good drop I can out of life on a daily basis.

Cheers!

Chris

Update: Just heard back from Dr. Bollard, she mentioned to me the EBV negative killer t cell study may be ready to try in 9-12 months. Like I said, I have no idea if it will have the effectiveness of the current trial which has been developed over the last 10+ years. Hopefully I can buy another year or more out of this SAHA and keep my fingers crossed the EBV negative trial has the same effectiveness if it ever gets released...

Dust is settling...

All I can say is this has been a dubiously surreal last couple of weeks... I'm preparing to fly back to Michigan tomorrow in what I hope is a fresh start.

I'm going to start by attempting to clear all of the snow that Michigan once again got pummeled with from my walk/driveway. Once I clear a path, I'm going to start getting the new place ready to move into by painting and refinishing the floors. I look at this place as a blank canvas ready to be transformed into a work of art with the experience I've gained re-modeling two homes previously. It's going to be great to feel useful again and I can't wait to get started...

I also found out that the place I was hoping to transition into down here in Florida will be ready to move into first of March. After this week of sleeping on different beds/couches, the timing couldn't be more perfect. I really feel for people/families who have lost things in a fire or other disasters. It's a pretty helpless feeling...

I'm grateful that I've been feeling reasonably well physically despite the stress I've been under. Right now, my number one goal is to rid myself of any unecessary anxiety so that my body can continue to work with the SAHA to keep the cancer down. I have my next scan coming up on March 24th at NYU. I really feel like this is a big one. If things go well, it will mean I'll get at least a year out of this trial, something I never would've fathomed as I barely shuffled into Dr. O'Connors office last April. How much more I'll get from this trial, God only knows. I've sent my tumor block to Baylor University to be tested for EBV virus and the possibility I'd be eligible for the RIT trial. I should find out the results by the end of the week. Prayers and good vibes are welcome for me to be EBV positive here! If I'm not eligible for the trial, I'll just continue to hope the SAHA maintains it's effectiveness and continue to try and live a healthy life both physically and mentally.

I'm cautiously optimistic about my future for the first time in a long time...

Fire in the hole!

I'm not really sure how to start this post. I was really busy in Michigan catching up on removing 6+"s of ice from my porch driveway, moving stuff over to the new place, picking up/dropping off Chili, cleaning my place, blah blah blah. Combine this with the temperature being in the teens, you could say I was more than ready to come down to Florida...

So after arriving yesterday afternoon, I dropped off my bags and went over to the pool to soak a little sun and go for a swim. I then went back to my place to grab my bike as I had the urge to go for a short ride. I was gone for around 25 minutes.

When I came back, I went into my place and it was all black. I then noticed a heavy smell of smoke and tried to walk in but was overwhelmed immediately. I then ran out to exhale and went around the building to my bedroom window. I looked in and couldn't see a thing, I was totally freaking out at this point... Knowing that I had my medication, camera, computer, ipod, phone, etc. in my backpack which was right by the window and not being able to get the window open, I decided to kick it in to try and salvage what I could. Hindsight and the subsequent lecture by the fire department chief tells me this could have been a bad idea. Thankfully the fire that was started snuffed itself out quickly (room ran out of O2) because the windows were closed and I closed the door to my room when I left. I got a new mattress before I left last time and the old one was leaning against the wall near where I keep my bike. When I took my bike out, the mattress must have been partially leaning on it and without knowing, it must have fell over onto a lamp I also keep in the corner. The blaze was brief but fierce...



This is the corner where the fire happened. I had a pretty cool Hector Salas reproduction over my bed that I found at Faith Farm which is now only and ashen outline. The pile of ashes are from the old mattress. The new mattress, which I only had a chance to sleep on once, was made of memory foam and remarkably fire resistant. It was only slightly melted (but still had to be thrown away like most of the other stuff in the room, i.e. tv, furniture, bedding, luggage, etc.). I did manage to salvage most of my clothes/shoes and my golf clubs and classical guitar are charred but still usable.


You could see how hot the fire got by the remainder of the plastic shower curtains as they melted up. The tub was around 18-20 feet away from the fire...

I guess you could say this is a bummer...

However, of course, it could have been much worse. If I had my door open, the fire would have kept growing and probably burnt the rest of the place down and most likely the other 3 units in my building.

I was planning on moving out of this place and into another so I guess this just sped up the process...

It's crazy how powerful the smell of the smoke is (probably from plastic burning) and how permeating it is. I'll probably have to throw more stuff away but doing my best to salvage what I can.

Unfortunately, I didn't have any insurance, big ugh...

It was nice though when one of my neighbors came over with the number to the local Red Cross office and within a couple of hours of my phone call, two volunteers were at my place. They were able to get me a hotel for three nights and gave me a little money for some food and essentials.

Never thought I'd be the recipient of help from the Red Cross. What an awesome operation they are and would think a great organization to donate to...

Anyway, that's my most recent drama! You know I couldn't go more than a couple weeks without some major catastrophe, ha!

Amazing how you can keep things like this in perspective and even marginalize it compared to the all the cancer stuff. I'm sure prior to cancer I would be totally depressed about all of this but truthfully now, the only thing I am is tired. I'm going to try and get a nice sleep here at the Quality Inn in Boca and get ready to tackle tomorrow.

I think I'll go hit some golf balls with my ashy clubs or take a bike ride down to the beach.

Life goes on... ;)

New York Minute...

Finally had a smooth trip to New York, thank God. That is if you count having to remove around 18 inches of snow from the car at 5:30 in the morning smooth ;) I can't believe how cold it is in Michigan! I went from 77 degrees to zero overnight, shocking. It wasn't as cold in New York today thankfully though as I have to walk from Grand Central to NYU and back on these day trips. I think they'll probably get our deep freeze tomorrow though so heads up New York!

I ate my pineapple again and barely squeezed by once more with my platelets being exactly 50K, whew!

Also had a chance to meet another Hodge Warrior today, Tim. I was waiting at the elevator when this young guy looks over to me and asked me if I was Chris and I said yeah. Turns out Tim's mother messaged me a while back after finding my blog. I was embarrassed that I didn't remember our exchange but felt better after Tim mentioned that my blog helped him out which was cool. So, I've got a new buddy in New York now and can't wait to hear some good results as he just started the same trial I'm on but with a much higher dose of vitamin B3. It's funny but Tim's pretty much followed the same path as me treatment wise except he's had an allo transplant compared to my tandem auto transplants. It was cool exchanging war stories with someone who's gone through the same thing and talking about all the other stuff that comes along with having refractory cancer. Always good to make a new friend...

So, that's all I've got for now. Need to grab another blanket and bundle up in this drafty room... Hate to say it but I can't wait to get back down to Florida! This cold just aint for me anymore...

Adios

Chris

So Long Kirsten :(

Kirsten on her and Ian's restored Boston Whaler somewhere up in the beautiful Northwest in Canada. I think they completed it last summer. Glad she was able to enjoy it for a while....

Today has been a bad day. I found out this morning that my friend and fellow cancer warrior Kirsten has passed away after a courageous battle with refractory Hodgkins. Her body could no longer take the therapy to control the disease as her blood counts stopped cooperating. I am pretty numb right now and have been all day.

I'm really at a loss as to what to say except my love and prayers go out to Kirsten's Mom Susan and Ian as well as the rest of Kirsten's family and friends.

I've missed Kirsten's interesting and insightful posts on her blog about this disease as well her outlook on life. She inspired me to seek out ways to be at peace with my situation and in her spirit will renew this ongoing quest. I also admired Kirsten's talent as a writer and photographer, both of which she was very talented. I felt like we had a lot in common. Like I said in my previous post, when I lived in Seattle, I had a chance to meet Kirsten and Ian in person when they were in town to consult with the SCCA (in Seattle, they lived 2 1/2 hours away in Vancouver BC Canada). Jackie and I went to pick them up at their hotel and took them around the city before having lunch and dropping them off at Bumbershoot music festival. Kirsten definitely tried to live by planning cancer around her life which is the only way to go.

I will miss Kirsten's calmness and dry wit. She was also very strong. As I've written on here in the past, the side effects from the therapy sometimes are as bad if not worse than the disease itself. I know how uncomfortable she was but yet still seemed to power through and have a great attitude.

I will miss our e-mail exchanges. She would always take the time to write something interesting and funny...

This is all so shocking right now...

I've got to try and keep my head together. It's impossible not to think of the same thing happening to me in the relatively near future. I worry about my platelets. I'm barely making the threshold each time I have to do blood draw. Is this going to be a chronic problem? (actually it almost already is). Once your counts don't recover on their own anymore, it's really challenging to beat back the cancer.

I don't want to make this about me though because today is Kirsten's day. She was only in her mid 30's for God's sake. I just wish she could have held on a little longer as perhaps something would have come out that could have saved her. I know how tired she must have been though and feel comforted knowing that she doesn't have the awful anxiety anymore, not to mention the physical and mental pain that she was in.

It's really tough to lose one of your heroes. I know all of us in the refractory group keep tabs on each other and do out best to try and support each other.
Even though Kirsten hadn't been as active in the end due to her constantly feeling like crap, she still took the time just last week to explain what was going on with her and seemed to be optimistic about getting through this, ugh.

She had a great sense of humor, such a nice calmness to her and was very kind. Again, if you'd like to know more about her, please check out her blog cancersmancer which can be found on my blog list on this page.

I will miss her very much.

I'm going to try even harder to make every minute of this life count as it's so precious.

Here's to you Kirsten, my friend. May you rest in peace.

Chris

Lighting a Candle for Kirsten

Kirsten and I at the Honey Hole in Seattle after her and Ian's visit

Sending light, love, prayers and good vibes to my friend Kirsten. May you and your family find peace and comfort knowing so many people are thinking about you...

Please read Kirstens blog "Cancersmancer" on my blog list. She is a great gal who I've always looked up to and admired.

Cancer blows :(