Thursday, October 27, 2011

Rich Update

Well, it was a long day for the family today but I'm happy to report Rich survived his surgery and they were able to remove the mass from his lung as well as some suspicious surrounding lung tissue. They also removed some lymph nodes and will be testing those to find out if they need to follow up with chemotherapy. The hope is that they won't have to because of the condition of his heart and the CHF. I think he has a few more days at UofM then he can hopefully go home. Ann Arbor is nice (especially right now with the colors changing) but as Dorothy said, there's no place like home...

As for my Mom, I think it's been a good distraction for her regarding her upcoming battle. Behind the scenes, I've been doing a good amount of research, getting names of doctors here in Michigan as well as researching some of the novel trials for small cell lung cancer. There are a couple of targeted therapies out there as well as the new class of drugs that actually starve the tumor, essentially cutting off it's food supply by preventing the necessary network of blood vessels that tumor cells need to survive and proliferate.

Don't get me wrong, this is going to be a tough fight. I think we have the best chance going at it agressively as possible right away. We'll know more after the PET scan and the pathology report results but don't think there's anything wrong with arming us with as much information as possible. Lung cancer is the number one killing cancer in the world I believe, you'd have to think there's got to be more experimental treatments out there. If there are, I will find them and my Mom will somehow have access to them. She and Rich are going to be with us for a long time if I can help it.

I welcome any input if you or any of your friends have any experience with this.

Thanks for reading once again :)

Chris

Friday, October 21, 2011

Struggling

It's been a tough 36 hours. Just found out that my Mom most likely has lung cancer along with Rich, double whammy if you will. A positive about Rich's is that it's just an isolated spot that can be removed (God willing he gets through the surgery with his CHF) and hopefully the beast stays away. As for my Mom, unfortunately it looks like it's metastasized to her lymph nodes which isn't unusual to happen quickly. The doctor mentioned there is reasona for optimism which was good to hear. We will find out exactly what type it is when she has a biopsy hopefully next week. Rich's surgery is on the 27th at U of M and I know everything is going to go well. As for my Mom, she has already beaten breast cancer so I think she's chemosensitive not to mention she is a f'n warrior along with Rich. How often have you heard of a married couple having to go through lung cancer at the same time? I don't know why all of this is happening nor do I understand why my sister had to go through it with her brain cancer and I have to deal with my crap but it's life and you have to roll with it I guess. This is just another bump in the road (as if we need any more) and I know there's a purpose to it and we will all be stronger and closer because of it.

It's hard for me to think of any of my stuff anymore and I guess in some demented way it's a blessing and a curse if that makes any sense. Now I know how people who care about me felt when they found out I was sick. I'm comforted to know that while it was bad (and still is), you quickly adjust because you have no choice. You learn to accept the treatment and not feeling so great because you have to. One thing that gives me hope about my Mom and Rich is that they laugh a lot and don't take life too seriously. My mom and I were talking about this yesterday at the hospital and I've read books on it. It is great supplemental therapy! Also, because we have a split family, there's twice the support which is awesome!

I am going to stay positive about all of this because like I said, there has to be a purpose...

It's back to basics, one breath at a time.

Thanks for the support in advance,

Chris

Monday, October 17, 2011

Random Thoughts

I don't really have any updates but just felt like writing a little to help me sleep... I still battle insomnia and know this to be a way to help me doze off into dreamland so here goes.

Where to begin though? I guess maybe I should start by saying that I'm still doing relatively well (for someone in my shoes) but it's a constant struggle. I probably have written about this before but I've just learned to accept all the little nagging things (some not so little) as I deal with the developing long term affects of my body taking such a pounding after going through all the toxic therapy. My back problems are well documented and I'm just recovering from a "pop" that occurred a couple weeks ago as I was moving stuff around in my garage. It pretty much put me down for 7-10 days and I couldn't do much of anything. It's much better now and have been testing it doing more stuff to the house and going to the Home Depot today grabbing some drywall and lumber (tip, don't try to load drywall on top of your car on a windy day!). Hopefully I can get out of bed tomorrow!

Another once small issue (in terms of size and pain) has developed into a full blown major issue (although still small in size) and that's my two big toes! Unbelievably, the inside bottom portion of the nail on both toes has become infected and making it almost impossible to wear shoes these days for more than a couple of hours. Crazy how something so small can be so painful! It's slowly been developing as the temps here in Michigan drop and I'm no longer able to wear flip flops like I've mostly been wearing the last couple of years. I have wide feet and now know that I have to be really conscious of the shoes I wear. Gone are the days where I can wear my Chuck Taylors or any shoe for that matter with a narrow toe. Ever since I dealt with the Guillaine Barre Syndrome from SGN-35, my feet have been messed up and often get swolllen if I'm on my feet for very long. I don't realize that they're swollen when I have my shoes on and the result is my toes being crammed in there and each step forcing the skin over the nail (at least that's my theory ;). Anyway, I'm now trying to figure out how to deal with these ingrown toenails and can tell you it's no picnic.

I've also been dealing with some more frequent headaches that I haven't had since chemo. The culprit while on chemo was not drinking enough water and I think the same holds true today (but don't remember having to drink so much to keep the headaches away). I think I'm writing this to document in addition to bitching and moaning to make myself feel better, haha. Anyway, something to keep my eye on after a couple of scares from the doc's in how Hodgkins can sometimes go into the brain albeit rare.

On a positive note, I think I'm going to do another sweet road trip here in a couple of weeks, this time on the East Coast. I've been invited to New York for Halloween and the crazy parade they have every year. So, the plan is to drive to New York, check out all the "freaks and icons" (actually borrowed that from an album title by Dzihan and Kamien which is a must have for your electronic/house/ambient collection), then drive south down the coast and eventually ending up in Delray Beach to leave my little car for the rest of the winter. I still have to work out the details or can perhaps just let the trip unfold on it's own as I connect with friends en route or am pulled by certain sites that I haven't experienced. I'm kinda leaning towards just going with the flow with a loose outline of things I want to see. Interesting to find out how it unfolds...

I think I'm ready for an adventure, it's been a while since I've done anything like this so I'm looking forward to it. Plus, I think the colors will still be changing as I head south so that should make for some nice driving. Hoping my 23 year old car with almost a half million miles on it continues to run like a champ. I recently had the brakes fixed along with major work earlier this summer to the transmission and other stuff so it should hopefully be ok. I should be extra careful documenting this trip, maybe BMW will be interested in my story, just saying... ;)

That's about all I've got in me for now. My spirits are mainly good except when I think about what my Mom and Rich are going through right now along with my Sister. Rich has his surgery now scheduled to remove a cancerous spot on his lung (despite his CHF) and my Mom should be finding out soon the results of her CT scan. Just found out today that my sister has been dealing with more frequent seizures, probably the result of the extra stress and the resulting change in body chemistry that most likely affects her body's response to the meds she takes to control them. If anybody could use some good news, it's those guys and I wish to God they could get some. I know first hand how toxic stress is to your body and well being. I'm hoping that all this bad stuff will be a bad memory one day and the worry over at my Mom and Rich's place will go away or at least be held to the background. No matter what, we're all pretty well battle tested so I'm confident that whatever happens, we'll be able to roll with it and come out on top, whatever that means. For now, prayers and positive energy is all we can do and will take either from whoever is reading this! I can see how prayer and faith is carrying my friends the Reeds as Mike continues his battle with MDS and Hodgkins and know that it can only help us so thanks in advance if you don't mind!

Ok, that's all for now, time to hopefully fall out of this conscious state into a blissful dream state :)

Thanks for reading, Chris

Monday, October 10, 2011

What the Heck...

Just when I thought things couldn't get any worse in my family, I called my Mom today to find out the results of Rich's needle core biopsy and it's confirmed, Rich has lung cancer. While expected, it's still hard to hear and of course troubling. The big blow was still yet to come however... After we discussed Rich, my Mom told me she had an x-ray last week and she has inflamed lymph nodes in her chest which prompted the medical team to order a CT scan for this Thursday, ugh ugh ugh. I didn't know this but she's been really tired lately (symptom) and has developed a cough (symptom) which is rare for her. Kinda freaking out here but going to remain calm and deal with this like I deal with my own crap, the best I can.

I just don't understand why our family has to deal with so much... Seems very unfair.

Not sure what else to say...

Time to put my own troubles on the back burner and do my best to try and process all of this. Hopefully it'll be nothing and we can go back to dealing with just Rich's pending surgery and successful recovery.

Keeping the faith,

Chris

Wednesday, September 28, 2011

Quick Update

Hello everyone,

It's my last day in Seattle and I've been having a blast! Had a chance to catch up with all my friends out here and again see Seattle from a different perspective, a healthy perspective which has been awesome. Had a chance to go to a couple of great concerts at venues I've never been like the Paramount (Bon Iver) and Showbox (Gomez). Spent some time at my favorite park, Lincoln Park and the Olympic mountains were mostly out and the water was shimmering beautifully as the sun poked through the clouds. It really is beautiful here but know for sure now that I could never live here full time again... It's just too far from everything not to mention the cool drizzly weather isn't conducive for my love of the sun and it's healing properties not to mention the vitamin D!!

I wanted to share some decent news I received from Dr. Ram a couple of days ago, sorry took me so long to post it. He mentioned that from the scans that things are looking pretty decent. The CT scan didn't show any changes which I guess unto itself, isn't so bad. However, the PET scan showed dramatic improvement in my uptake levels in my "hot spots" leading Dr. Ram to believe that the reason the images on the CT aren't smaller is because once Hodgkins cells die, they leave behind a lot of inflammation/scar tissue. There were some lesions that previously showed 11-12 SUV levels and those same nodes are showing 1.8 or 1.9 now! We never use the word remission but I bet this is the closest I've been in a long time :D

So, with this news, I plan to ride this wave as long as it'll take me! I'm feeling stronger all the time and only occasionally have to take extra pain meds for my back (don't think the herniated discs and osseous erosion is going to get better anytime soon). That said, if it's only that and my occasional days where I'm majorly fatigued I will surely take it! I feel so blessed to be able to live a relatively normal life. I'm ready to start setting some goals I think and will be sorting through them in the next few weeks... That's about all I can say on that for now.

Thanks again for all of your support and prayers, they're working!

Hope everyone has an awesome day and look forward to the next update.

Cheers!

Chris

Monday, September 19, 2011

Sad News

I found out yesterday at Rich's 67th birthday party that my cousin Rodney - who'd been fighting Non-Hodgkins Lymphoma - passed away. One second we were enjoying the party then the next, those who got word, were in shock (we didn't say anything to the other side of the table as to not ruin the party). It made for a bittersweet day as we celebrated Rich (happy birthday!) and all that he's dealing with right now with his heart and having a PET positive spot on his lung. But the news of Rodney's passing made it difficult to enjoy the rest of evening...

I just talked to Rodney and his wife a couple of weeks ago regarding potential resources for information and my experience with similar treatments that we shared. He sounded hopeful and I thought they'd be able to find something either in Seattle or New York or Houston... I think the disease was pretty aggressive and didn't respond to anything for very long. I know it was causing a great deal of pain as it was in his hip. He did two nasty treatments, RCHOP and ICE. I haven't had RCHOP but know it's nasty and had ICE and I know first hand it's no picnic. He did them consecutively with no real break, pretty rough stuff for a 38-39 year old but much tougher I'm sure in your 60's. I've got a lot of respect for what he had to deal with...

My heart goes out to his wife Renee and the rest of their immediate family along with Randy and Melody.

Lymphoma is a horrible disease and know so many people struggling with it. I'm hopeful that all of the new drugs that are coming out now along with the new Gene Therapies, the research for a cure will continue to expand and continue to get funded. If you ever would like to donate to a good charity, the Lymphoma society is an excellent choice.

Rest in Peace Rodney

By the way, prayers and good thoughts for Mike Reed as he continues to fight MDS along with his Hodgkins. He has ups and downs and the latest I read today it wasn't the best news... Hoping for an upswing in blood counts and Mikes spirits. I'm going to put his Caring Bridge link up on my blog list for anyone who'd like to leave a positive message. The guy is a warrior, fighting Hodgkins for I think 8-9 years, legendary...

A bit of good news about me, I'm feeling better, more energized! I've just been sleeping like a bear lately and I think my body just needed the rest. Today was the best day yet as I did the backs splash in the kitchen in glass mosaic tile. I had energy to burn after running errands and making dinner. In other words, I felt normal today again, so nice :) I think I just have to make sure I take breaks between big events. I'm sure having a couple beers at each event contributes to my body shutting down... I just can't process alcohol anymore except for a drink here or there. The good news on that though is when I do have a drink, there's little to no pain in my back which gives me hope that everything is cool in there if you know what I'm saying ;) I'll know either way on Wednesday after an all day affair down at Karmanos starting at 9:30. Yup, part of being a guinea pig on these clinical trials means that they can shoot you up with radioactive sugar whenever they want. Seems like I have a PET scan every other month these days. Wonder if that's going to catch up with me one day...

Anyway, I got a little carried away, I wanted this post to be about Rodney only but sure he wouldn't mind.

Good night all, Chris

Thursday, September 15, 2011

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...