Thursday, April 19, 2012

Rambling On...

Hello my friends!

Sorry again about that last post, makes you appreciate simple things like paragraphs and spacing when you have no control over it! I regret it came out like that because I felt there were a lot of important things I mentioned in that post. Everything just got jumbled together and I know was hard to read...

So, here goes another try typing this in the new blogspot format which I'm still getting used to. For some reason, it doesn't seem to operate as smoothly as the last version, maybe it's just me.

I'm continuing what seems to be a really long road back to recovery. I've slowly been building my body back but for some reason, I've been extremely exhausted. I'm sure it has to do with me getting exercise and being more active working on the kitchen etc. I actually took a bike ride to the beach the other day and once I got there, proceeded to do a 2 mile walk on the sand which is no joke (at least for me and my f'd up feet). When I got back, I can't remember being more exhausted... I hit my bed and passed out immediately and didn't get up for 2.5 hours. It's been several days and I'm still dealing with the soreness a bit but nothing like the first two days where I could barely move. Sometimes I feel like my body is that of a 75 year old rather than a 41 year old, crazy...

But as I complaign, I also feel so blessed to be able to get out and do things again, ahhh. Like I mentioned, I purchased my first beach cruiser bike with a gift certificate I had and the thing is a blast! I had the handlebars pulled back so I can just ride upright which I've never done. I'm so used to hunching over on my road bike or mountain bike which is so uncomfortable compared to cruising! I want to get a basket and another thing for the back to carry things. Based on how my legs feel, I think I'm going to start biking here and in Michigan as much as I can. My legs have really lost a lot of strength over the last few years after the neuropathy/guillaine barre bout. I don't mind working out but at this stage of the game, I need to trick myself into doing it, i.e. biking, swimming, walking on the beach, working on the house, you get the idea. I used to have a gym membership and I think I've outgrown the concept of standing in the same spot repeating the same motion over and over again, I don't know...

Glad to say I've gained about 5-6 pounds back from the 10 I lost while being sick. I still deal with the appetite issues but have found these awesome protein shakes made by Bolthouse Farms that have about 800 calories per bottle and 64 grams of protein, all from whey and soy (they're chocolate so I'm sure there's plenty of calories from sugar, oh well).

Wanted to share some good news by the way regarding my Mom. Her Doctor told her that she's in remission! Better yet, the two harsh chemo's that she takes are going bye bye and she's only going to have to get Herceptin which I think is gentler and kinder than the traditional chemo's. I need to look it up to see exactly what it does but the most important thing is it's working and progress is being made, yes!

So, I'm really close to finishing the kitchen down here at my place in Delray Beach. I'm looking forward to posting some before and after pics next post. I'm really proud of it as I've done it for much less than $1000, probably more like $600-700. I could be on that show Trading Spaces although instead of it taking 2 days it's taken me more like 3 months, lol. I did get new appliances though so I guess that would be extra... I think I mentioned before I bought them at Sears at what I thought was a great deal but after them shipping the wrong stove and having to spend countless hours on the phone trying to fix the situation, maybe I didn't get such a deal, but then again, maybe I did, it's over now...

Well, it's that time of year again, time to start transitioning back up north where I feel most at home, where my roots are, ahh... I look forward to being close to my family, having chili under my bed as I sleep, the crisp air, the tall trees, the down to earth people, and all of my little projects going on up there. Don't get me wrong, I love it down here in Soflo but as they say, there's no place like home, Michigan in the summertime, very nice :)

Ok, that's all I've got for now, looking forward to an awesome day tomorrow.

Remembering all of my friends, some who I've met and some who I've not (in person), who are struggling right now. If you're reading this, pretty good chance you're one of these people or friends/family of one of these people and to you I wish peace and healing.

Goodnight, Chris

Tuesday, April 10, 2012

Starting Over Again…


Finally starting to feel somewhat “normal” again, thankfully. I’ve finally got the fever under control and I think the antibiotics are starting to work, whew… I have to say, that is one of the roughest patches I’ve gone through since I started this crazy journey almost five years ago. Beyond the obvious chemo/radiation induced sickness, the only time I can remember feeling worse is right before I was diagnosed. I remember moving into my new apartment in West Seattle and I met my new landlord for the first time… The first thing she remarked to me is that I “looked green”! The funny thing was, she was right… My skin was a nice hue of greenish gray and I definitely felt like I looked. Somehow I still managed to load up most of my stuff into the moving truck and thankfully my neighbor at the time, Roger, gave me a hand unloading. My entire lung was filled with fluid and my body was riddled with tumors throughout my lymphatic system, especially my chest. That was almost five years ago, seems longer…

Amazingly, now that I think about it, I think this instance was much much worse as far as how sick I felt. There is no way I would be able to move/load anything into a moving truck and subsequently unload it. In fact, there was a point there where I couldn’t even get out of bed for two weeks. It was a major task to just get up and down the stairs. I feel bad as I was able to see my family on Sunday but was still struggling quite a bit and feel like I didn’t have a chance to have any quality conversations with anybody. It was still great to see everyone and a nice surprise to see my Godfather Pat who drove down with his wife Kelly and my cousin Sean. I wasn’t aware but I guess Sean has been dealing with some health issues of his own. He’s been having GI issues but they haven’t been able to figure out exactly what it is. He mentioned he’s lost 30 pounds. Hope they’re able to figure out what ’s wrong, I’m sure it sucks being sick during your first year of college, not cool…

Before I started writing this, I was half dozing and thinking of how lucky I am. I was thinking about my buddy Tim S. who I met in New York as we shared the same doctor, the famous Dr. O. He was doing clinical trials like me and seemed like the world was his oyster, just getting a great job in the financial industry (if I remember correctly) and ready to move on from a stem cell transplant and all the B.S. treatment. He’s a young dude, probably 10-15 years younger than me, great attitude, nice guy. I just recently corresponded with him and found out he’s now in Seattle going through another transplant, this time an allergenic where you get someone else’s cells in hope that they play nice with the rest of the cells in your body. The hope is that they are able to recognize the intruding cancer cells (unlike our own flawed killer T cells which for some reason aren’t able to recognize the invaders). Anyway, I was just thinking how tough it mush be on him for one second walking around mid town Manhattan, decked out in a suit and ready to take on the world then all of the sudden having to put everything on hold while he flies all the way out to Seattle to be completely pummeled by harsh chemotherapy and having to deal with anti rejection drugs, the works. From what I understand, an allo is much harsher than an auto transplant because like I mentioned before, you’re getting someone else’s cells along with all the chemo/radiation. I’m sending out good vibes to Mr. Tim and hopefully if you’re reading this, you’re doing well with the engrafting and things are going smoothly. You won’t meet a nicer guy than Tim and he deserves to have the chance to move on with his life…

This brings me to a conundrum I’ve been facing more and more with friends I meet in our small Hodgkins community. I’ve become more active in a Facebook Page created solely for us cool refractory kids and it seems like more and more people are choosing to go the allo route as novel clinical trials have seemed to start drying up. I don’t know if it’s because a big new one (Adcetris or SGN-35 as I know it) has been FDA approved, the first Hodgkins drug I think ever invented. Maybe the other drug companies are scared to put resources into such a rare disease and compete with the new kid on the block (SGN-35). I mean, there are people for whom Adcetris doesn’t work (like myself) but the statistics are pretty good when you look at the overall aggregate. This leaves even a smaller pool of people who can’t be cured (they’re now starting to use Adcetris in front line therapy which will no doubt increase the efficacy, the best chance you have at a cure when it comes to Hodgkins or most cancers…. Anyway, it is weird that I don’t hear about many new drugs coming out for refractory Hodgkins and this is just a theory, I hope I’m wrong. The drug that I happen to be on wasn’t even developed for HL, it was actually developed to combat renal cancer and they found out that it has activity in Hodgkins (thankfully for me). Perhaps there won’t be any more R&D for Hodgkins drugs now that there are a couple out there that seem to be working for a portion of the population. I guess my hope is that they’ll continue to develop drugs like the one I’m on now (Everolimus or RAD001) and also the brand new exciting gene therapy research that is going on at Baylor University. Maybe after Adcetris, the focus is going to shift, the more I sit here and think about it, I think this is where I want to see the research go, into kindler gentler approaches that work with your body to kill cancer cells, not by bombarding them with toxins. My disease tends to like the toxins for some reason. So, maybe I take back what I said earlier as it might be na├»ve of me to say there aren’t any new drugs coming out when in fact the new technology seems to be way above traditional drugs and my hope is that someday they’ll be able to develop this technology into a semi cure by getting infusions every few months or so. How cool would it be to have the knowledge to participate in this type of research!

So now that I’ve managed to blabber on, I’m thinking it’s a good time to wind this up. I’m really happy to say that I’m near 75% of the way back, quite a big jump in the last couple of days. I’ve got another week of my antibiotics and hoping by then I’ll be most of the way back. Looking forward to enjoying my life again.

Thanks again for reading,

Chris

Wednesday, April 4, 2012

Complete Response!!!!!!!!!!!!


Wow, what a rollercoaster ride it's been the last few weeks. I just recently wrote a blog about finally getting my Mojo back, making plans for the future, yada yada yada then all of the sudden, my world came crashing down, or so I thought. What I initially thought was a cancer recurrence or progression turned into severe pneumonia which as I mentioned was welcome news compared to the alternative. Well, today the news got much better as Dr. Ram handed me the dictation of my PET Scan and the magic words that have been so elusive ever since I relapsed over three years ago were sitting there magically on the piece of paper, "patient is showing a Complete Response to Treatment"!!

Like I mentioned previously, I had suspected that I was pretty close if not all the way there from listening to my body. To actually see it written down on a piece of paper, right there in black and white for some reason validated all of the hard times I've been through over the last several years and the feeling was oh so sweet. Sweet enough that I forgot about having pneumonia for a second and wanted to capture the look on my face so I can remember this moment for as long as I live. As I mentioned to a good friend earlier and to anyone out there who is refractory like I am, I know that this remission is tenuous and at any given time, the beast can decide it wants to wreak havoc on me again and I'll have to do what people who are in my position do, try and take it in stride.

But for now, for this moment, I plan to savor the news and enjoy it the best that I know how. As a refractory cancer survivor, there are very few times when you can sit back and "smell the roses" so to speak. Even though I try and live my life like this all the time, when you have active disease in your body, the roses may smell great but there's always a pesky little voice in the background telling you that "yeah, they smell great now but don't enjoy it too much because they're not going to smell like that forever" if that makes sense. Today, I can honestly say that little voice just got a lot quieter and hopefully as each day goes by and I enjoy this blessing I've been given, the voice will eventually go away.

I'm so excited for what the future holds! I feel once again that the world is my oyster and I want to get out there and drink it all in. I wrote on a caption earlier when I posted the news on Facebook that "life is so good right now, I just want to go out and eat it all up". I really like the ring to that and hopefully, once I get over this infection, I can start to begin my feast.

Once again, to everyone who has supported me, my deepest heartfelt gratification. I appreciate every positive comment and you should know that even during the hardest times, you are the reason why I keep this blog going. I just hope one day I can somehow pay it forward and affect someones life in a positive way the same way that you have affected mine.

So, without getting any more sappy than I already have here, I hope everyone who reads this has peace in their lives and you are blessed with some of the good fortune that I have been so lucky to be part of.

By the way, another bit of good news, my Mom's scan report came back today and her tumor has shrunk by 25%, yesss!! Just need to get Rich feeling consistently better now and I think it's going to be a great spring/summer.

Here's to the fine folks at Novartis who make RAD001!

Cheers!

Chris

Monday, April 2, 2012

pneumonia!

Well, never thought I'd be happy to hear I have pneumonia but that's what it is. My entire lower rt line is infected and next steps are being determined.

As for the cancer, they're not even sure if its there, yesss!!!

Sunday, April 1, 2012

Frustrated

I don't know what to say... Just took my temperature again and still have a fever, 101.7. This is starting to get ridiculous and pretty worrisome. Ever since I've been diagnosed in Nov 07, I've never had a fever like this, for so long. I feel like I'm "sick" again and to be honest, it sucks pretty bad. I can't do anything, I have absolutely zero energy and I'm always freezing my butt off. At least the night sweats have gone away, that was probably the scariest thing.

I rescheduled my PET scan for tomorrow morning so I guess that'll be the first step to find out if the cancer is back growing or what the deal is.

Its been tough to write this so I'll wind it up now.

Hope to know something by Wednesday.

Thanks for reading

Chris