Good Update

Well, Rich is out of the hospital and back home, things are back to "normal" if there is such a thing, haha...

As for myself, I just wanted to say for the first time since I've been going down the C road, I can honestly say that it's gone or is taking a long break. For the first time in what seems like an eternity, I feel like a normal person (relatively speaking) again. Yes, I still do have issues like a messed up back and chronic fatigue but I've somehow found a way to weave these things into a normal life. There is a caveat to the above statement however but to me it's irrelevant. I might very well have small active disease in me (scans next week, will find out for sure) but even if I do, it really doesn't matter. What matters is that I'm once again looking ahead (in a healthy way, still living in the moment of course) and making plans for myself. I think I'm going to finally get my real estate license down here in Florida and Michigan as well. Since I've been in sales my entire professional career I thought real estate would be perfect as I'd work for myself and could ease into it as conditions dictate. I think it's going to be a fun new endeavor and a good way to dip in and out of being a professional and also a cancer survivor. I've mostly remodeled two houses now and as I'm finishing up, think it's time for me to once again pursue a somewhat normal career. We'll see what happens...

So, tomorrow I'm going down to Miami to see one of my all time favorite bands, Radiohead! I've been really fortunate to see some great shows this winter down here like My Morning Jacket and G Love and Special Sauce and looking forward to seeing the Black Keys in Detroit next week. Last week, I was invited to see Electric Light Orchestra at the Seminole Casino in Coconut Creek. I remember their music as a kid hanging hanging out at my Auntie Vi and Uncle Felix's place during the holidays. We'd be up in my Godfather Pat's room (I think, long time ago) and remember them playing ELO albums and everyone would be dancing, what a trip...! When I heard the band playing some of those songs, it was pretty cool and surreal. I have to say, they sounded really good for a bunch of old farts, haha.

Looking forward to a great night tomorrow and a continued fun winter down here in Sofla!

Cheers,

Chris

Prayers and Good Vibes Requested

My stepfather Rich had to be taken to the emergency room again within the last hour. He's having trouble breathing again and was just in the hospital for the same thing a couple weeks ago. This is getting pretty scary and my Mom is really upset.

He just can't seem to get better... They put a another lead on his pacemaker hoping he'd have more energy but it seems as if things have only gotten worse. His lung keeps filling up with fluid, ugh...

I hope they can figure out what is wrong and he can get back to feeling better because it's been a while.

For my family who reads this, I'll make sure to try and update as the news becomes available.

Thanks,

Chris

Smooth Sailing :)

Hork and me at Binks Forest in Wellington FL

Just wanted to quickly check in as realized it's been a while. I'm still feeling pretty well, so well that I just finished playing golf three days in a row with a buddy who came down to visit from New York. It's amazing how much better I feel this year compared to last and I'm so grateful. My back is getting stronger and stronger as well as the rest of my body. I'm still gaining weight which is great. Things quite frankly haven't been this good physically in a long time :)

I'm sad to say a fellow Hodgkins Warrior and legendary blogger Hillary St. Pierre sadly passed away I've just learned. She was very influential not only as an advocate for Hodgkins but for the problems we still have with our Health Care in this country. To highlight her impact, Hillary had 5000 hits on her blog when she passed. I'll miss her passion and fight not to mention her entertaining and enlightening posts. My sympathies for her husband and son... please feel free to check out her blog link below "Baldies Blog". Hillary will definitely be missed.

I also wanted to give a shout of support for my friend Marsha who is again struggling with her fight. Unfortunately, this is another sad insurance story. Because Marsha has been so tired and overwhelmed by her treatment, she missed a deadline turning in paperwork to her disability carrier and they canceled her insurance. Believe me, when you are feeling like crap, the last thing you want to deal with is insurance issues or administrative issues period. Why should a sick person have to deal with paperwork, phone calls, follow ups (because God knows you don't always hear back from people promptly when you leave a message). My Mom has just recently dealt with this when she first started. It makes you think that there has to be a better way we as a society care for sick people. The everyman for himself/herself shouldn't have to apply here, in other words, I just have serious issues with capitalism being combined with medicine. There has to be some kind of hybrid system where sick people aren't falling through the cracks. We aren't animals, we're humans. We should be taking care of each other. We're the greatest nation on earth, we should be able to figure out how to do this... So Marsha, I hope that you get word soon whether they'll pay for your Revlmid.

Stepping down from my soapbox, I wanted to share a creepy story, or a story about a creepy critter. Last night after getting in from grabbing some food after golf, my buddy went to put his clubs in his travel bag and as he looked down, the biggest ugliest spider I've ever seen decides to pop out of his bag. The look on his face was blank mixed with sheer terror. Because I was a little nervous myself, I do what I sometimes do in situations like that and started to laugh hysterically! Thinking on my feet however I just told him to drag the bag outside (the spider was still attached) and eventually the thing will just walk away. So, he drags the bag outside and it slips out of his hand and the spider, like a small dog jumps from the bag to the ground and bolts off over to my old oven fan. I had to get a picture of this thing, it was the biggest spider I've ever seen! Turns out it was a banana spider and apparently they're harmless. Lots of creepy critters down here in sunny Florida ;)


How would you feel knowing this guy was sleeping in your house!

Thanks again for reading and keeping up with me. I had been wanting to do a post regarding starting over and think I'll talk about that next time. Think it's time for me to take some steps to hit the reset button so to speak. Look forward to talking about that...

BTW, I almost forgot to say how good it was to see my cousin Ken when he stopped by a couple of weeks ago (I guess time has really flown...). Him and his dog Nathan made a pit stop down here on their way down to Key West for the Month. Hoping you guys are having a blast down there!

Ok, time to rest this sore body and get some sleep.

Chris

Grateful...

Just wanted to check in and say hey... I'm really happy to say, things are going pretty well right now. Like I mentioned before, the Florida sunshine is definitely been so nice, a blessing that I don't take for granted. The weather down here has been perfect everyday, mid to high 70's and sunny. Hoping it stays like this for the rest of the winter...

I've been feeling pretty well overall except for these lingering headaches. They're mostly in the base of my skull and in my neck but sometimes feel it in my temples. I think it's another side effect from the RAD or Everolimus. I think I've had pretty much every side effect from this drug but thankfully never all at once! I finally got the welts I was getting on my face neck and back under control with some good Neutrogena acne wash and lotion plus prescription clindamycin.

Now that I have that documented, I can talk about some of the interesting things going on down here.

Today I went to my buddy Ivan's one year memorial at Tradewinds park down near Ft. Lauderdale. Ivan's sister Sylvia put it on and did a great job. Everyone there was really cool and down to earth, pretty much how Ivan was. I don't know why I didn't know this but he actually passed away last year at this same park on the disc golf course. Ivan had a bad heart and would always talk about his inevitability and with my situation, not to mention him being a great guy, I felt a bond with the dude. Anyway, in the spirit of Ivan being a huge disc golf enthusiast, everyone at the memorial picnic went to "Ivanhole" which the park generously named after him. We all gathered in a circle and this gal who was a friend of Ivan's said a beautiful prayer to "the creator" and other people took turns after saying something about him. Then, we all took turns firing off drives, some good, some not so good but it was fun and pretty funny when one of the guys who was a little intoxicated sent his disc into the lake. All in all, a really good day.






Other than working on this place and getting out here and there, I've been pretty content just hitting the beach almost everyday and walking in the sand barefoot. There's a less populated, private side of the beach and I kinda like it sometimes when you have the whole thing to yourself (almost). It's pretty neat seeing how the ocean changes, clarity, waves, tides, tons of washed up jellyfish and Portuguese Man of War one day, millions of tiny shells washed up in stripes on the sand... The ocean is so incredibly relaxing, I think it's by far the best place to meditate and chill out. You can actually breathe to the waves crashing, being one with it... Still can't believe I have access to this whenever I want, I'm pretty blessed.

On a less cerebral note, Atlantic Ave has been really fun too! This last Thursday, I went to my first "Jazz on the Ave" and was impressed. I think they have it in season on the third Thursday of each month. The whole strip is closed down and people walk in the streets, there's live music everywhere, great food and everyone's in a great mood. Maybe that's why things seem so happy down here this time of year, I mean a good majority of the people down here are on vacation! You want to have fun on vacation right?

By the way, I really think the economy is starting to pick up. South Florida was and still is hit pretty hard by the Great Recession but I've noticed a lot of signs that things are turning around. One obvious sign is all of the construction projects that have either resumed or are brand new. I'm not just talking about house here or there but major multi use construction projects downtown (condo's) and out West they're building huge housing developments. I've also noticed that there are several new small businesses that have opened up, restaurants, bars, shops, etc... It's nice to see.

You can start to feel the campaign heating up here with the tv ads lately. So far, I've only seen Mitt Romney ads (I swear, I think that guy is a humanoid) and you can tell how the momentum of his campaign has shifted. Last week, all of the ads were "presidential" touting his business background, 42 year marriage, etc, running a state, etc. This is when he was feeling pretty good about things after New Hampshire and polls looking good in South Carolina. Then, all of the sudden Newt Gingrich comes out of nowhere and pummels Romney. Almost immediately, the "presidential" ads switched to nasty attack ads on Gingrich. And, now that the conservative majority in the Supreme Court allows super PACS where an unlimited amount of money can be spent by any corporation, just as long as they're "not connected" to the campaign, give me a break! So, with this, now more than at anytime before I would think, it's who has the most money or who has the wealthiest friends. It's going to be interesting to see how the country turns, I'm fascinated by this stuff...

Well, that's all I've got for the moment, good to put up another entry although I wish I had more to say... It's back to the cold weather tomorrow to check in with my family and check in with Dr. Ram on Wednesday for my required blood draw and clinic.

Bracing myself for the shock, yikes!

Cheers,

Chris

Change of Scenery

So, just wanted to check in and say life is good at the moment. I've managed to overcome a personal setback and enjoying every second of being back down in Florida. The weather has been absolutely perfect and have been getting to the beach every day. My place is really starting to come along as I now have fresh paint on most of the lower level. Something about a fresh coat of paint, kinda makes everything feel new, by far the cheapest way to spruce up a dingy place!

I'm also glad to say that I've been feeling so much better this last week. My back has healed after popping it again and I seem to have more energy. I am now convinced of the importance of sun for my energy level and general mood. The difference in the way I feel now after being exposed to the sun for a few days here and last month where I barely saw it (both down here and in Michigan) is remarkable. I also think I have really minimal active disease right now if I have any active disease at all. I never asked for the results of my last CT scan but bet that the nodes they've been following are pretty small. These two factors are making me a pretty happy camper right now I must say ;)

So, besides working on my place down here, my other full time job is trying to gain some weight. I know it sounds weird but I really have to work to keep my weight up. I've been really conscious to try and start the day with a decent sized breakfast (to get a head start on my calorie/protein consumption) then trying to snack healthy and not missing any meals. I also bought some whey protein powder but bummed I forgot to bring it with me down here... I guess I can buy some more as I know I'm going to use it ;) Happy to say I've already gained a few pounds back and hoping for around 10 more which is going to be really tough, especially when this RAD001 wreaks havoc on my appetite...

I also wanted to talk about some internal voices lately that have me thinking more and more about an allogenic transplant. I don't want to think about it but it seems to keep coming up, first with Dr Ram and his reminding me that right now would be a desirable time to try it with such a low disease burden. I've also been reading about a lot of fellow Hodgers on the Refractory Hodgkins Facebook page which was (thankfully) started by a guy I met on my other Hodgkins board on Webmagic or Lymphoma.com, Lowell. I just can't come to grips right now with the thought of going through so much toxicity, essentially giving up another 6 months to a year, feeling like crap most of the time. And, all of that for a one in three chance (I think that may even be generous) of ridding the disease for good. Not to mention, the somewhat likely event that I'd develop some form of graft versus host disease where the cells that I'd be inheriting from a donor would start attacking my body/organs etc. in ways that are not fun. It would definitely mean having to take tons more drugs, put myself at risk for a fatal infection while my immune system regrows and really limit my choices of new clinical trials that may be coming out as most won't take volunteers who've had an allogenic transplant. Yet, as bad as all of that sounds, the chance at a cure and not having to hope new treatments keep coming out is strangely tempting, (I wish that didn't sound so pathetic but such are the options for a refractory Hodgkins person like myself). I've met some folks that have done it or are scheduled to do it (while still deciding) and I have a lot of respect for what they are trying to achieve. It truly takes a warrior to go through something like and allo transplant, especially with all of the other therapy you've gone through to get to that point. Most people have already gone through first line therapy, salvage therapy, and an auto transplant where you use your own cells. In my case, I've done two auto transplants, not to mention three clinical trials now so I just don't know if I could survive another Hiroshima if you will.

For now, I will just hope that what I'm doing keeps working. I will also be keeping an eye on the allo route, hoping that ship doesn't sail as it's always nice to have that in my back pocket.

I wish this stuff was a little easier ;)

Chris

BTW, thoughts and prayers requested for another Hodge warrior going through some hard time, Zach. He's been dealing with some really bad symptoms (coughing, itching, trouble breathing) and just found out his disease is progressing and had to stop his clinical trial. The problem is that like most people who've been fighting Hodgkins for any decent length of time, the availability of novel drugs that you haven't tried become less and less. I'm hoping that Dr. O or another wizard Oncologist can come up with something to help him kick the disease back a bit. I'm going to put a link to Zach and Erins caring bridge site if you'd like to lend some support. Thanks

Happy New Year!

Well, the new year came in without much of a bang for me which is ok... Just ended up staying in and didn't mind a bit, I must be getting old, ha!

I just wanted to say that I'm really excited about this upcoming year as I think some big changes are on the horizon. I'm much more settled than I was this time last year and think I'm ready.

I'm also looking forward to a better year for my family, specifically Rich and my Mom. Thankfully, my Mom switched doctors and hope that she's going to get more competent care and this breast cancer recurrence is just another bump in the road.

I have so many things to be thankful for; I just want to get back to being content and happy as I think I lost my focus of living in the moment and enjoying it. When Rich and my Mom were diagnosed, everything kinda flashed in front of me again and it brought back a lot of bad memories. There aren't too many things that can rock your world as much as a cancer diagnosis, that's for sure.

2011 was difficult in losing so many friends. My old friend Lee McPherson who was diagnosed with brain cancer a week apart from my diagnosis, Kirsten out in Vancouver who I met while living in Seattle and most recently, Mike Reed who I kept in touch with through emails. Can't forget my cousin Rodney who was the best man at my parents' wedding... There are others who have touched my life like Andy Keely and Mike from St. Clair Shores who will also be missed. I know I'm forgetting some folks and wish my memory could serve me better right now...

All of these heroes inspire me to live the fullest life I can live. There are still so many things that I want to experience while I'm relatively healthy...

Here's to a great 2012 to you and your family!

Chris

Winding down 2011

Well, Happy Holidays belatedly to you :) It was a weird one this year for me, hard to explain. I did the drive up from Florida on the 22nd and bam, Christmas was on. My Aunt Shelly and Uncle Butch put on a nice dinner and it was good to hang around the family for a bit on Christmas eve. My Moms was nice too on Christmas day. I kinda felt like a zombie on both days though... I recently switched up taking my pills from the evening to the morning and have been exhausted during the day lately. I wanted to try something different as before, when I took them at night, it was almost impossible for me to get up before 11-12 in the afternoon. I started getting a little freaked when the days started getting so short, I was only seeing daylight for 4-5 hours, not cool. So, the switching to the morning has resulted now in me being able to wake up earlier but being really tired during the day. So the new experiment is one in the morning and one at night. We'll see how it plays out.

As for my Mom, I got a bad phone call from her today. Apparently her doctor and her team dragged their feet in getting her tested for HER2 and when they did, they had a screw up on the spelling of her name or something idiotic... The end result is she didn't get an additional drug today (Herceptin) with her conventional chemo (4th infusion) that dramatically increases the efficacy of her treatment. This means apparently that she's going to have to get an additional 4 treatments. This is hard to believe and I'm at a loss as to what to say. Such an incredible appalling mistake. Why there's not a check and balance system there I have no clue. Good Lord. You can't buy back that time but the hope is that the Herceptin has great effect and all of this is just a bad memory.

Good time to change the subject I think...

Even though it's really cold here in Michigan, I had a pretty nice experience tonight at the park behind me where I let Chili fly around without her leash. We went out tonight for the first time in a while as the park got flooded with the warmer temperatures the last few days. Tonight was below freezing (30 degrees F) and the ground and the water froze. It was pretty neat walking on the frozen ground, kinda like a hard sponge and with the lights around the park, the frost on the ground was literally sparkling, quite beautiful.

I had a scary experience earlier today however... I think Chili has been getting a little cabin fever. I let her out earlier today but forgot to lock my gate and found later that she decided to take a stroll down the street on her own which she never does. It's always her standing at the front porch barking letting me know I left the gate open, no big deal. Today she scared me though because like I said, she never runs away and it was pretty damn cold out. My mind of course went to all of the worst scenarios and I was a little freaked. I had to run out and yell for her 8-10 times before she came running out of someones yard down the street. I need to make sure to lock the gate for now on, can't afford any more drama!

So, in the spirit of relaxing, I plan to do a good amount of it along with some early new years resolutions like going back to yoga (bought a $25 groupon for 25 sessions, not too shabby ;) I've also just changed the strings on my guitar to these nice Elixirs which were a Christmas present. Those things are buttery! Anyway, I'm thinking of taking a few lessons to try and learn some new skills. I've been stagnant in my playing for so long now... I want to learn how to play some slide or some bluegrass or something fun. I've got lots of other things I want to get into but going to wait to see how this fatigue thing plays out so as to know how much I can take on in addition to working on these two houses and my other projects.

I've also got to work on trying to put on some weight! Funny, most people are trying to lose weight after the holidays. It was a little scary getting on the scale yesterday and weighing under 16lbs. I won't say how much under except I need to get busy eating, don't like being this light. I feel fairly strong but don't like the way I look and how cold I get. I wish I had the cash for a personal chef, that'd be sweet! So, I've got to start forcing myself to eat more (I skipped a few meals down in Florida working my butt off on my place). I've also been dealing with these mouth sores which makes it pretty painful to eat. I think I also have to start eating some things I've been avoiding lately, trying to adhere to an anti inflammatory diet. Once I get back up to closer to 170, I can get on the healthy diet again and just work to maintain it.

I guess one of the advantages of having cancer is that I never have to worry about getting fat, haha ;)

So, I think I'm going to check out here, just realized it's almost 3:00 in the morning, yikes. I took a long nap today, thus the long night I guess.

Starting to look forward to the new year and with it all of the great things that will hopefully happen in 2012.

Cheers!

Chris

BTW, RIP Mike Reed, I'm happy for you now that you're in a better place :)