Thanks to Panera Bread...

I can finally update! I've been at my new place in Delray and haven't had internet or cable, totally disconnected except for my phone. It was pretty weird at first but have gotten used to it and hope to get connected the next time I come down.

To summarize my trip, it's been awesome! After the snowstorm in Pennsylvania, it has been truly memorable and sad it's coming to an end.

I had a chance to catch up with friends all the way down the coast who I haven't seen in a while along with everyone down here. The weather has been mostly great and today had a chance to hang out by the pool (after finally getting a key!)

So, without going into too much detail re the trip due to little time here at the restaurant, I'll have one more day tomorrow then it's back to the D early Wednesday morning where I fly up, land and go directly to see Dr. Ramchandran. My headaches have thankfully mostly gone away and now I'm just dealing with massive fatigue which hopefully he can help me with. I've got a weird rash under my eyes and near my mouth too which needs to be addressed as well but it's only cosmetic and sure there's some kind of cream or something I can get for it.

As for my family, Rich found out he won't need chemo or radiation but got some sad news that he's no longer eligible to be on the heart transplant list. I guess the only option is to make sure the remaining functioning part of his current heart gets stronger somehow. They're supposed to attach a new lead to his pacemaker so hopefully that helps. As for my Mom, she is getting a PET scan today after having to wait (stupid insurance company HAP, what are they thinking?!). She goes in tomorrow to consult with an oncologist who has extensive experience in recurrent breast cancer and hope she can give her some good options.

That's really all I have time for now, thanks again for reading and keeping up with me and as always for the prayers and good thoughts.

Chris

Great News! (relatively speaking)

Just got a text from my Mom telling me that her pathology report came back negative for Lung Cancer!!!!! It's not all good news though as she still does have cancer as it's a recurrence of her breast cancer from 20 years ago that has metastasized. While the best news would be no cancer, at least the prognosis is much better (according to her thoracic surgeon).

So, while her and Rich are by no means "out of the woods", it looks as though they have a much better chance than we thought :)

Thanks for the good vibes and prayers.

Cautiously optimistic,

Chris :)

Halloween 2011, pretty memorable!

Creepy costume shot on my way down to parade NYC 2011

So, I decided to go forward with my planned trip to New York and subsequent drive down the East Coast on my way to Florida. I was a little worried the trip might not have been the best idea in the beginning. I stayed up really late last Friday trying to get everything together so I could leave the next morning and be in New York at a reasonable time to go out with some friends. About halfway into the drive, I had serious doubts if this was going to happen. The mountains in Pennsylvania were really nice then all of the sudden, all hell broke loose. It started snowing a little at first then went into a full blown blizzard, trees were fallen over the highway, trucks and cars were sliding into ditches and then I started to slide around and decided it wasn't worth risking my life to get to New York on Saturday night. I bit the bullet gladly and found a Best Western in the middle of BFE Pennsylvania and have to say it was probably the smartest $100 I've ever spent. My little convertible is obviously not made for snow driving and not even sure if it's ever seen cold weather. So, not only was it sliding but the engine was bogging, couldn't see out of the windshield with no defroster, it was pretty scary...


At first, the snow was nice :)


Never a good thing when you're driving on the highway only to be staring at headlights facing you! I was going pretty slow though hence my chance to take the shot. This accident was my wakeup call to get off the road...

Getting to the hotel and being able to exhale was awesome! I was so exhausted, I think I passed out around 9:30-10 which never happens... It was nice waking up the next morning with the sun out, burning the snow off the road, and being able to drive on dry pavement. The rest of the drive then went pretty smoothly and it was pretty surreal coming out of the mountains of PA and New Jersey, seeing the city skyline and all of the sudden being back in the concrete jungle. I took the Holland Tunnel to New York and was shocked that it was $12 bucks. I think they raised the price because of the condition of the entry of the tunnel. It looks to be falling apart pretty bad, can't imagine how much it's going to cost to ever fix that thing up...

Once in New York, I was able to meet my friends and we went to a sports bar to watch the Lions kick some major ass. Can't remember the last time I was proud to root for the Lions in a different city, pretty cool!

The next day was Halloween and we decided to hit the parade. I actually took the train down to Houston St. and was going to meet my friends for dinner and purposely didn't eat because it was pizza and pasta and you need a lot of room to eat all those carbs. Little did I know that once I got out of the subway and onto the street how many people were going to be out and I almost didn't make it to the restaurant. They had the streets blocked off with barriers and weren't letting anyone cross 6th ave, ugh. So, if you can imagine the mouse in the maze trying to find the cheese, that was me ;) I went up and down side streets only to be turned away everytime trying to cross over. Finally, I looked up the street and noticed hoards of people crossing 6th and I ran as fast as I could to try and get across. I finally ended up in the middle of a mass of people who were watching the parade and realized I had to get into the "crossing fenced lane" and had to run all the way back and re-enter if that makes any sense. I finally did get across and it was such a major relief, I felt like I had won again, one guy against thousands of people in a city I'm not overly familiar with... that pizza tasted great! ;)


Contained craziness in the village


Creepy skeletons at the parade


The next day I went down to my little park and took this shot of the finally finished skyscraper that they were working on everyday last year which is located next door to the Hope Lodge bldg. So much quieter here :)

I wanted to wind this up by mentioning that while all of this is fun, exciting and adventurous, I do it with a heavy heart knowing that my family is going through some hard times right now and a fellow Hodge Warrior Mike Reed is struggling pretty bad in his fight. Please take a minute to check out his Caring Bridge site which you can find a link under my blogs lists and leave an encouraging message if you can. It's been one thing after another for the guy and my heart goes out to him and his family. Also, looking forward to digging into the trenches with my Mom when I get back to confront her beast and give it hell. I've got names of 5 doctors now who have been recommended to me from other doctors so we'll have some good options. Even though I'm out here, my heart is in Michigan with my family and always in my thoughts. Love you guys!

Chris

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

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

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

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