Sunday, January 22, 2012


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!



Sunday, January 8, 2012

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, 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 ;)


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

Sunday, January 1, 2012

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!