Recovery Mode

I have to say, it's been a whirlwind since the last time I posted... Seems like right after I wrote that last one I had something going on everyday and I think it caught up with me as I'm still trying to recover.

It started with going to the ballgame two weekends ago where the Tigers were down 8-1 and there were black skies on the horizon and my buddy and I decided to leave and head home only to watch the Tigers miraculously come back and win on TV of course, ugh! Anyway, we decided to head to the free festival after in Royal Oak, "Arts Beats and Eats" where one second the guy from Foreigner was attempting to perform (it was actually pretty bad) and all of the sudden the storms that were looming down at the ballpark made there way North to Royal Oak. The next thing I know I'm scrambling to find shelter as the storm came gusting through with ferocity. It was kind of unnerving to be stuck under a tent with dozens of other people in the dark. I decided to go back out into the rain to find a better situation and found another tent that wasn't so packed but still pretty dark. That was pretty much it for the evening and jumped in the car to drive home only to find out that my street had no power, crap. I thought it would only last a couple of days - unfortunately a couple days turned into six and it got kinda creepy. So, with no power here, I decided to head down to Cleveland to catch the Tigers take on the Indians. Tickets down there were super cheap and my buddy had Hilton points so we got to stay downtown at the Hampton with parking included, perfect. Couldn't have asked for better games as we got to see Justin Verlander pitch the night game on Monday and witnessed an awesome comeback for the next day game. I even got a ball thrown to me by our best player, Miguel Cabrera. The Indian fans were so sparse we were able to sneak down right behind the Tiger dugout. Embarrassingly, when he threw me the ball, I actually dropped it, doh! The guy was nice enough to roll it back up the dugout where my buddy grabbed it and handed it to me, pretty cool!



The ball!



Me n Todd, a couple of geek baseball fans!

So, it was back to Detroit and unfortunately, my power still hadn't been turned on. In fact, turns out a Tornado came through and wiped on tons of power lines and uprooted some grand old trees. It was almost like Florida after a hurricane, tree branches and crap everywhere... Unfortunately, my ugly tree at my new place didn't get blown over but the tree I planted 13 years ago at my first place, a beautiful Bradford Pear, was blown over and all over the front yard, pretty sad.



Huge tree down in the park behind my house.



The remains of my little Bradford Pear Tree :(

As I was saying, I was now back home but it was just a shell of a home, crazy how much I depend on power! I was able to get my hands on a generator and at least had some light and could charge up my phone but that was it. The stuff in my fridge had already passed the point of no return so had to toss it all. Everything just seemed to get turned upside down, all you could hear was the loud noise of generators running all over the neighborhood, needless to say, it was tough to sleep.

I finally got my power back I think on last Friday morning thankfully. The sports madness didn't stop in Cleveland, I ended up going to the ballgame again on Friday night where they of course came back and won (ended up winning 12 straight before tonight) and the next evening, had a chance to be part of history attending the first night game at the Big House at the University of Michigan. That unto itself would've been great... What put the night over the top was the fact that one of the greatest games ever was played that evening in front of 115,000 fans. The scene was surreal, never been part of something like that. I still get a dropped stomach when I think about the energy at that game with all those people, it was something I'll never forget.



Me and Mike along with 115,000 other fans! Btw, Mike could've got big money for these tickets had he sold them but instead, invited me to go with him. Thankful to have good friends.



The mayhem after the game when Michigan scored a touchdown going 80 yards in 30 seconds, unreal!

That was last Saturday, today is Thursday and I haven't been right since. It actually started on the way home from Cleveland and hasn't resolved yet. I just don't have any energy! It's hard for me to get out of bed before noon these days. My whole body aches, especially my back. I just can't seem to get going... I had a little burst tonight and used it to clean up my place which got disgusting during the power outtage. Hoping to start feeling better tomorrow for the DIY street fair right here in my home town of Ferndale :)

I've got a scan next week on the 21st so we'll see if it's the medicine not doing it's job anymore and I have progression. I'm of course hoping for something better like maybe I'm just worn down from all the craziness but something has me a bit concerned. Let's just say I'm not as confident going into this scan as I was the last one...

Time will tell I suppose. I'll probably wait until then to update. I have the scan on Wednesday then I'm off to Seattle courtesy of my buddy Sean and the Delta buddy pass program! Chances are I'll be updating from the great northwest, should be fun :)

Until then...

Winding down the summer

Me last week, feeling blessed :)

Sorry, I haven't felt like posting for some reason. Maybe because my normal time on the computer, at night before I crash has been spent catching up on Breaking Bad! I'm totally hooked on that show and I'm finally caught up after watching half of season two, all of three and the first seven of season 4. I can't decide if I like BB or Dexter better...

Anyway, just thought I'd check in and let everyone know I've so far avoided getting sick and thus a trip to the emergency room. I have a feeling my neutrophils have gone up. Usually when they're really low (like my last blood test), I can feel it in my throat, almost like the feeling of just before getting sick. It's weird how it always starts in your throat when your getting sick... Like I said though, that feeling is gone and I'm feeling pretty well and still enjoying the summer. Seems like it's lasted forever for some reason. The weather started off in June pretty crappy but got nice toward the end of the month and it's lasted the entire season. I think I'm ready for a change though and looking forward to the colors starting to turn...

My place is still coming along (the kitchen is almost done), have had a chance to get away up to Northern Michigan and starting to plan a trip out to Seattle to see my friends out there plus soak in some of the beautiful Northwest at a perfect time of the year to go :)

This weekend should be fun in neighboring Royal Oak as the Arts Beats and Eats festival is happening. Tons of free concerts and of course lots of cool artwork and great food. I had a blast last year and I think it's even bigger this year, Ford had a good year!

That's pretty much it for now, sorry if these posts are kinda boring. I've had a ton of things going through my mind that I've thought about sharing but have felt compelled to keep it simple. Sometimes it can bite you in the ass when you express your feelings on a public blog like this. People sometimes may get the wrong idea or sometimes I'm sure this stuff can scare people. It's hard to toe the line of being a Refractory Cancer survivor and a normal person. I so much want to just be a normal person but this little cancer thing somehow always seems to stop that from happening. It's something that will always be with me and wish so much sometimes I could just pack it up and get rid of it. How does one erase the stigma of having this disease?! It affects so many different aspects of my life in a negative way, what the hell!!!

Well, I guess I've gone from not sharing to sharing, weird how that happens. Funny thing is, I feel better already. Mission accomplished. Same reality, but negative thoughts released into the universe, pretty cool.

I haven't heard anything about my cousin Rodney so hoping things are getting better with that. I know my friend Mike Reed is still scrapping and hoping his blood counts can continue to rise and hold. Last I read about Zach is that the treatment he was on did nothing and they're hoping to get another chance at SGN-35 as it's one thing that worked in the past. The only problem is now that it's FDA approved (I must congratulate and thank Seattle Genetics for their work even though I had a horrible reaction to it) the cost of the drug is $13,500 per infusion. Yes, cancer drugs are expensive, especially ones that are just released for clinical use. Because of this, seems as if they're may be trouble getting insurance to pay for it without scratching and clawing. Crazy that someone like Zach who participated in the clinical trial to get the drug approved like myself, essentially making himself a Guinea Pig like the rest of us who partake in clinical trials, might not have the chance to use the drug to extend his life and buy him time for a cure. Something seems terribly wrong there...

Sorry about the rant, I guess I do have a lot on my mind...

Anyway, it's getting pretty late and the Benadryl is kicking in (just like allergies have been kicking my ass).

Hope all is well to the awesome people who keep up with me and this blog. I really appreciate it.

I'm out...

Problem could be developing, ugh...

So I went in for bloodwork on Wednesday and while my platelet count was pretty steady at 41K, Dr. Ram told me for the first time (I really don't pay great attention to my blood results) that my neutrophils have been trending downward for a while now and Wednesday's test had me at 1.1, the lowest I can be is 1.0, bummer... Probably explains why I've been feeling a little crappy lately. I had a scare on Monday evening when I developed a nasty migraine headache and was up vomiting all night, not fun. I think I may have contributed to it by roughing up my counter tops in another attempt to refinish them (this time it worked :) without a mask on and also not drinking enough water as it was hot out Monday. Anyway, it went away next afternoon but the lack of sleep all night took a toll on me and I've trying to catch up ever since. Going back to the neutrophils (basically your immune system count), I have to be really careful of avoiding situations where there may be sick people in a closed environment. I have to bring a thermometer with me to check for fevers and if I get one, have to go to the emergency room as per Ram. Again, bummer...

I personally am thinking/hoping this is just a little bump in the road and the neutrophils will rise a little removing me from harm and I can continue on this dose of RAD001. However, if in two weeks they've gone below 1K, Dr. Ram said he may have to lower my dose which of course will reduce the drugs' effectiveness preventing my disease from spreading.

Just when I thought I had it good... rats!

I guess I'll just be careful, treat my body extra special and keep the stress low while trying to enjoy myself. I'm almost done with my projects here at the house and from there, I'm going to take time to travel a bit I think, it's been a while. If the neutrophils are low, I may have to take some road trips which is no problem whatsoever of course! I'm thinking on my drive down to Florida this year, I'll go to the East Coast then follow it down making stops in places I've yet to spend quality time, perhaps like Boston, DC and North Carolina. Hawaii and the Northwest is on the horizon again too not to mention Europe (thx to my buddy Sean hopefully ;).

Enough about me, what I'm dealing with is nothing compared to the following three people. First of all, my cousin Rodney who lives with his wife Renee in Vancouver BC just advised the family that things aren't going so well with him. Rodney has Diffuse Large B Cell Lymphoma and learned that first and second line therapy hasn't worked. In fact, his disease has turned agressive and they're going to try a drug that I've had in the past with some success (Gemzar) even though we have different cancers. I'm now more certain than ever that cancer is definitely genetic as Rodney and I couldn't have lived further apart. Anyway, the goal is to get him to a point where he's strong enough physically and blood count wise to pursue clinical trials whether they're in Canada or here in the U.S. Thoughts are going out to those guys, hit's ya even harder when it's a family member dealing with a similar situation.

I also wanted to request prayers and good vibes from a couple of my fellow Hodgkins warriors. First, I just read Zach Rongers' Caring Bridge site which is written by his wife Erin. Seems as if Zach's symptoms are worse than they've ever been and like a lot of us refractory folks, has tried a lot of different treatments. They seem to be running out and to make matters worse, the guy is pretty miserable with itching, coughing, shortness of breath and energy. Hoping he can find something to knock back the disease a bit to buy him time for perhaps one of the new T cell studies that are out now. Another friend, Mike Reed is dealing with a couple of really tough scenarios. I think I mentioned him before but because of all the therapy and chemo Mike has had over the years, he's developed a blood disorder called Myodysplacia (sp?), which is very difficult to treat and wreaks havoc on his blood counts. It's difficult to fight two things at once (Myo and Hodge) but that's exactly what he's doing and my hat goes off to the guy. Both Mike and Zach have been dealing with this much longer than me and I have nothing but admiration for their courage in dealing with their physical and mental issues not to mention both have somehow kept working and both are fathers, pretty amazing.

Can't forget Rich, my step Dad who will be getting results of his PET scan tomorrow after they found a nodule on his lung. Hoping for good news here tomorrow of course. He already deals with heart issues and it'd tough I imagine to fight both but if anyone can, he can do it. The guy is a warrior!

Please keep him, my cousin Rodney and friends Zach and Mike in your prayers or thoughts. Really appreciate it.

Optimistically,

Chris

Continuing to do relatively well :)

Because I'm tired and just posted in my Hodgkins Forum, I thought I'd just copy what I wrote in my post there. I finally finished my bathroom! I'm now on to the kitchen which isn't nearly the project although I just had to rip out a section of my ceiling from the leak that was recently fixed in the bathroom, blah, blah, blah... Anyway, I'm redoing my counter tops (which were a dirty white) with this nice new product from Lowes where you reface rather than replace the tops. It's a 4-5 step process and hoping I can seal em up tomorrow and they look good. I have so many other little projects going on... I'm anxious to finish the inside of the place so I can spend the rest of the summer going on trips (hopefully).

Anyway, I need to crash so I can get up at a reasonable time tomorrow to sand and seal. If it comes out ok, I'll put some pics up!

Here's my post, some of the info may be repetitive. Notice we all list our treatment lists at the bottom of our posts, mine's getting pretty long, plus I just noticed I still have my age as 39, ha! Think I'll just keep it as is for s and g's ;)

Hey everyone, just wanted to let everyone know the RAD001 seems to be working for me :-) after almost two cycles, I've had reduction in some areas and stable in others. This is around a month ago... Since then, I've continued to feel better (my disease is in my back usually the pain is the indicator of what my disease is doing) which is great! What's even better is I have a quality of life back that allows me to do things that I was unable to do previously because of what SGN-35 did to my body.

It feels so good to have strength back, the most energy I've had in a while, very few side effects (occasional diarrhea, acne which can be controlled and low platelets).

I've felt so much better that there are days where I won't think about cancer for hours at a time which is pretty good when you have refractory Hodgkins.

Anyway, for any of the refractory folk who haven't tried RAD001, if it's available at a cancer center you can reach, it's a good option for those who haven't responded to traditional chemo like myself.

I've also sent blood to a Dr. Heslop at Baylor university who is heading a gene therapy trial which also grows your genetically altered killer T-cells although using different technology. I haven't researched how the drug works (been too busy enjoying my life but know the criteria is different from Dr. Bollards killer t trial at Baylor for those who are EBV+ in their tumors. Dr. Heslops trial only requires that you are EBV seropositive (which means you have EBV in your blood which 95% of the population has) and you are CD30 positive (which anyone who is accepted into SGN-35 is CD30 positive). So, when I find out more information (kinda holding off until I get official word that my genetically altered T-cells are actually growing as to avoid disappointment if they're not).

Anyway, hope you all are doing well and if anyone has any questions, I'll do my best to answer.
__________________
Chris 39, NSHL IVB BMB neg, 11-07 ABVD x 6, 1-08 NED, 6-08 Primary refractory, 6-08 V-ICE x2, 8-08 GVD x 3, 11-08 1st SCT Melphalan 2nd SCT TBI, VP-16, Cytoxan, 6-09 Relapse 7-09 SGN-35, 4-10 SAHA/Niacinamide, 5-11 RAD001 http://chris-alt-del.blogspot.com/

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Thoughts and prayers for the Keeleys

I just wanted to take this opportunity to honor another lost comrade to this ugly disease. My prayers go out to Kimberly, who lost her husband Andy after six years of fighting Hodgkins. I remember reading about Andy when I first joined the Hodgkins forum and feeling so bad that he had refractory cancer and how he did it. Well, I'm in the same boat now and I know how he did it, the best that he could. Judging by what's written below, Andy was one great guy who lived a very rich life. Makes me want to make more of an impact, very inspiring and I know my fellow Hodgkins friends hearts' go out to Kimberly and will miss updates about Andy. He never really posted but you got a sense of how he was struggling with Kimberly's posts. I know he's comfortable now though. Rest in peace Andy, and peace be with you Kimberly.

Here is the obituary for Andy:

Stephen Andrew "Andy" Keeley of Alpharetta, Georgia died on August 3, 2011 after more than six years battling Hodgkin's Lymphoma, which is a rare cancer of the lymphatic system. Andy grew up in Brevard, NC. He married his wife Kimberly on top of Stone Mountain in Georgia in 1998. They had two children together, Olivia and Calvin, ages nine and seven.

Andy was a 1988 graduate of Brevard High and attended NC State where he earned his degree in Mechanical Engineering. He worked as an environmental engineer with Mactec, Inc. Andy was very environmentally conscious. He loved what he did and the people with whom he worked.

Andy was adventurous - cycling across America after high school, traveling through Europe and Costa Rica, running with the bulls in Pamplona, working in Amsterdam, and backpacking through the western and eastern United States. He was relaxed, calm, and comfortable in all situations. Andy enjoyed playing pool, woodworking and was an avid movie enthusiast. His favorite movie was Harold and Maude. Andy loved music, especially Jeff Buckley, Cake, Rusted Root, and Sara McLachlan. He loved taking walks and good food.

Andy did not let cancer stop him from having as normal a life as he could. He was a wonderful husband and father. Even as cancer eroded his physical abilities, he was going on Cub Scout camping trips, to rocket launches and hockey games, to the children's gifted classes at Georgia State and to Girl Scout activities. He loved to take his children to the Greenway, the pool and the movies. He taught both his children to ride their bikes a few days before being hospitalized with lung problems in May.

Andy was a proud member of the Unitarian Universalist Metro Atlanta North congregation in Roswell, Georgia.

Andy is survived by his wife, Kimberly Keeley, his children, Olivia and Calvin, his parents, Dr. James and Jo Anne Keeley of Brevard, NC , Dr. Mike and Rhonda Keeley of Shelby, NC, Scott and Kim Keeley of Charlotte, NC and Matt Keeley of Istanbul, Turkey.

In lieu of flowers, the family would prefer contributions be made toward a fund for his children's college education, which may be sent to P.O. Box 4876 Alpharetta, GA 30023. Additional contributions may also be made to the Leukemia Lymphoma Society or to Hospice of Cleveland County.

Here is their Caring Bridge site if you would like to check in:

http://m.caringbridge.org/visit/andykeeley/journal/entry/id/9324234/page/1