Learning how to cope...

Hello Everyone,

I've been meaning to post but just haven't been able to come up with the words... To put it mildly, the last few weeks have been rough. Nicole finally got over her pneumonia and is in her own brand new suite at RIM (rehabilitation institute of Michigan). She's right handed and unfortunately, that's the side that has been affected. So, not only is she paralyzed on that side (including her vision), she suffering from Apraxia and Aphasia which makes it really tough for her to speak. She had a subcortical stroke and there is a chance she can recover... Thankfully, she has some wonderful people working with her with the hope that she may regain some of her functions. Nobody is able to predict how much she'll be able to get back. That said, we've all been there to root her on. As you can imagine, she's majorly disappointed and needs encouragement and support.

I've been trying to put myself in her shoes and with everything I've been through, nothing compares to what she's having to deal with. I lost the use of my hands, feet and most of my strength with Guillaine Barre so I had a taste of what it'd be like but I was still able to take care of myself mostly. With her situation right now though, she is totally dependant on the rehab staff and us for everything. When I say everything, I mean everything and it breaks my heart.

Through all of this though, she still manages to smile and laugh, quite an amazing woman I must say. There ought to be a picture of her face when you look up courage in the dictionary. The biggest tragedy is that she decided to undergo this surgery with the hope of a better life after her epilepsy got so bad. She had dreams of driving again, building up her social life, maybe even working again...

My hope now is to watch her walk out of RIM and we'll see what happens from there. She's already made some important incremental "steps" in different facets of her recovery and we're all looking forward to celebrating with her as she continues down the long road to recovery.

Other than trying to keep my disease at bay, her getting better is my main focus in life right now.

I also wanted to honor my friend Marsha Privalsky who tragically passed away recently. We were diagnosed with Hodgkins right around the same time and would root each other on as we went through a very similar treatment timeline. She was quite the fighter and a major inspiration to me as I went through all of my crap. Condolences to Bob and her family. She will be missed by many.

I will try and update as time allows (and my computer holds on as it's on life support rt now).

Thanks for reading as always.

Chris

Sad News

It took me a day to get the strength to post this news but here goes... My sister Nicole, during her major surgery, has had a stroke. This explains why she cant move her right side, head to toe. Needless to say, we are all devastated. This procedure was supposed to give her a better life, a chance to get back out into the world without the fear of having a seizure, perhaps even a chance to drive.

If I would've wrote this yesterday, I think it would have come across very angry because that's what I was -- angry -- angry and sad. She has been through so much and was so excited about this procedure it just breaks my heart...

So, going forward (which we have no choice and very good practice), she has a long road back. They're going to start right away with physical and speech therapy, most likely on her floor in ICU as she's still pretty out of it (as of last night). Once she's alert and able, they'll be transferring her PT to a program within the DMC called R.I.M. which is a very aggressive and many times successful physical therapy program for stroke victims and the like. I'm hoping and praying that she has the strength and will to go at this with all she has. Knowing how tough she is and her will to make her life better, she'll do the best she can.

I don't want to get into the reason why she had the stroke because quite frankly, I don't know if any of us will ever know for sure. I remember Dr. Mittal mentioning how hard he had to scrape the old scar tissue from her brain and wonder if he might have scraped a little too hard, rupturing one of her blood vessels. In any event, it is what it is and there's not a whole lot we can do now except hope for another miracle (it's actually a miracle Nicole is alive in the first place if you've read any of my previous posts).

While I'm crying on the inside, I'm going to make sure to stay strong on the outside for her and do my best to be there for her (along with my family) all along the way. I feel better than I have in a long time at this moment and plan to use my newfound strength to help my sister and to continue to try and enjoy my life. Florida may get delayed and even shortened this year depending on circumstances but I'm not thinking about that now. My dream would be to be able to take her down with me for some sun therapy but that's a ways off right now.

Any good vibes and prayers would be welcome for my family. They've been working for Rich as he's seemingly been doing better and my Mom is on her last chemo regimen of Herceptin for only a couple more months I think.

This will be another major test as if we really needed another one...

Thanks for reading,

Chris

Brave Warrior

Well, it's been a while since I've posted but wanted to talk about my sister Nicole and what she's going through as a way to keep everyone updated and to release some of the anxiety built up watching her go through what she's going through. Brave Warrior are two words that instantly came to me as I got ready to start writing this and that she is. I've mentioned this before but Nicole was the first one in our family to fight (and beat) cancer. She survived a Glioma that gave her a 10% chance to live more than two years. This is over 20 years ago...

Since then, she's had to deal with the buildup of scar tissue where the finger like malignancy existed and once threatened her life. This buildup has caused her to become epileptic, unable to control seizures on her own and having to be on debilitating medications to keep them at bay. This has resulted in significant loss in quality of life for her, stripping her ability to maintain a "normal" existence. She's been unable to work, drive, maintain a social life, etc..., enough to break you heart.

She tried this procedure 12 or so years ago when the seizures became unbearable, even with medication. The result wasn't as good as we wanted with the surgeon taking out portions of her brain responsible for her short term memory and thus greatly affecting her speech as she has trouble remembering words (imagine trying to talk if you can't remember any words, not easy...). It also greatly reduced her cognitive ability to comprehend multi dimensional concepts, you get the idea.

One thing that surgery didn't take away was her kind, sweet and sometimes silly disposition. You can see in the picture above (which I'm sure she's going to kill me over ;) that despite having wires coming out of her brain and her arms being bruised like she was in a street fight, she still has a great attitude and spirit. She's been through so much that she's taking all of this in stride (to the best of her ability) and is determined to get some of her life back...

This brings us back to the procedure she's having now. It's very similar to the one she had 12+ years ago with one major difference; the team she has working on her now is top notch. I can feel comfortable saying this because I've had a chance to talk to her neurologist and surgeon a few times now and not only are they supremely qualified but they are wonderful people to boot. Dr. Basha, her neurologist, (who she was referred to by my neurologist at the DMC) seems like an old friend. You can tell when a doctor really cares and when they're just going through the motions. I say this from experience. Not to mention, her surgeon, Dr. Mittal, is an extremely busy high in demand guy but still takes the time to come down to see how she's doing and isn't in any rush when we talk to him and ask him questions, no matter how redundant they might be. I really feel like she's in good hands.

So, the hope is once she has the procedure which entails brain mapping (placing a grid on her brain to measure seizure activity and where it's coming from) then going in to remove these portions of scar tissue that have built up since her last procedure, she might be able to get a lot of her life back. The portions of her brain that were removed last time cannot be replaced and she'll always have trouble speaking fluidly. That said, we're all hoping the positive result will be greatly reduced seizures which may allow her to drive again and get back out into the world (with more confidence).

It's not always the cancer treatment that's the most difficult part, it's what comes in the aftermath after you body has been beaten to a pulp. Most people look at it like "well, your cleared of cancer, life is good"! While this is true, rarely is it as good as it used to be. I know from my case for this to be true (you just make adjustments). While I'm enjoying being relatively cancer free for the moment, I still deal with chronic back pain, permanent neuropathy in my feet, chronic fatigue from all of the treatment and the meds I have to take on a daily basis. These are only the physical aspects... Dealing with these things on a daily basis not to mention the uncertainty of you future takes a major toll on you mentally. This procedure Nicole is having is like another battle scar if you will. Hopefully it will soon be over but surely not forgotten.

I'm just hoping that going forward, this current battle she's fighting will go a long way towards her finding an inner peace that sometimes becomes elusive when your a survivor.

Thanks for reading and I hope to have a good update after the major surgery is over, possibly next week.

Chris

Scan Day, Great Day!!

Well, it kinda snuck up on me but it's that time again... So, I'm just sitting here at Karmanos sucking down the contrast so they can take a look under the hood in about 30 mins.

Disease wise, I think I'm still doing well. I've been having a glass of red wine with my dinner lately and besides a little pain in my neck and shoulder (which has been there since the golf weekend) I don't feel any additional pain. My weight is almost back to normal, pushing 175 again finally. Haven't had any night sweats and my lower back where the osseous erosion was taking place in my T-9 thru T-11 hasn't really been a bother along with my retrocrural area on my right side.

While this is all good news, I've had a few instances when I thought all was well only to have a bomb dropped on me. So, as my friend Bekah would advise, expect the worst and hope for the best. The advice has been working so I'll stick to it ;) BTW, Prayers and good vibes for her for whatever comes next on her journey. She's an inspiration and one of our most eloquent advocates as refractory Hodgers. Wish you the best my friend.

As far as life goes, I've been pretty content lately. I stopped the Remeron and my feet went back down (not sure if I mentioned this). They want me to try Cymbalta as it has a dual effect for mood enhancement but most interestingly for me is how it also treats athritis/fibromyalgia and joint pain, all of which I deal with (to different degrees). It get's pretty freaky at night when I want to go downstairs to get a snack and my feet and lower legs send shooting pain up my legs. Thank God for the handrail going down... Once I walk on them for a while though, it seems to dissipate. Anyway, I haven't fully decided if I'm going to try it. I went on some online forums and the side effects seem a bit scary. Most medications that are newer seem to have every side effect told directly to you on those commercials and quite frankly, they do scare you. However, back before pharmeceuticals started showing up so frequently on commercials, there were new drugs coming out with the same if not worse side effects, they just didn't get emblazoned to your brain on the television. I'm going to take a little time and see how I feel...

Wanted to give a shout to my friends Eddie and Annie as they're getting married this Friday! I went to Ed's bachelor party on Friday, he actually chose a Muskie trip on Lake St. Clair through Motor City Muskies! We started off hot, catching 3 walleye, a northern pike and me getting my first Muskie (although it was a baby). From there, it's like someone flicked the switch and the fishing completely turned off. It was nice though being out on the Lake in Canadian waters as the weather was perfect and the water was like glass. Our captain was telling jokes the whole time, keeping us laughing as we tried to hunt down the elusive fish. He was nice enough to offer to take us out next summer for a free half a day to see if we can "get revenge" on the fish as he likes to say. So the rehearsal dinner is tonight and the wedding is tomorrow, should be fun :)


The Detroit skyline off in the distance on Lake St. Clair. Some of the best Muskie fishing in the world!


Captain Miller, Muskie King and joke man





Eddie the bachelor in the stripe shirt

I think it's time to wind this up as I hear Dr. Ram walking down the hall. To be continued...

Well, the news is in and he said that he's pretty sure the only thing left is scar tissue! NO DISEASE EVIDENT!!! This is great news, definitely going to try and savor it. I think there were some good consequences from being sick all that time during the spring. When I started feeling better, I really started to eat a lot healthier making sure I get enough anti oxidants for one to protect my immune system. Also, since I went so long without drinking anything, I pretty much have continued with very little if any alcohol. I have been having a glass of red wine lately with dinner tho again for the health benefits. I've also been really focusing on making sure I get plenty of pro biotics, something I never really concentrated on before. I'm addicted to Chobani yogurts and have been buying this stuff called Kombucha with these little seeds in it. It has three different pro biotics in it as well plus something about trying to crunch those little seeds in your teeth is fun and it's tasty ;) They are expensive though so instead of buying some tasty micro brew, I buy Kombucha or Aloe/Mangosteen(sp?) juice. I'm starting to work out slowly again, minding my back and neck. I did a run around my park with my dog last week and it was pretty intense. It's weird having difficulty catching my breath sometimes... I think it's a combination of being out of shape and all of the scar tissue in my lungs. Either way, I know it's good for me in moderation so I'm going to continue to stay active.

Thank God for feeling Good, I am so unbelievably blessed and don't take a second of it for granted. I am going to enjoy it while it lasts, period.... No time right now to think of anything but right now, ha!

Thanks again for reading,

Chris

Cheers!

Here's to back to normal size feet! Going to see my buddy Derek (who I've known since high school) to crack my neck back into place (hopefully). From there, looking forward to smooth sailing and enjoying the rest of August and into what I hope is a great Indian Summer. Truly blessed!

Prayers and positive vibes out to my sister who admitted to the hospital today for a battery of tests on her brain (with 28 leads attached to her head and wrapped up which can't be comfortable). She's off her seizure medicine and they need to record 3 seizures to find out where they're coming from in her brain. She's epileptic because of the scar tissue left behind from surviving brain cancer when she was 19.

The next step is to operate and remove these portions without harming the functioning parts, amazing how they're able to accomplish this. She had this procedure done over 10 years ago and it didn't yield the best outcome. We're hoping with the advances they've made in this field over the years, this time around she can go back to life seizure free which would be the greatest gift ever. The surgeon assured my Mom that he has a high 90's success rate so that's somewhat comforting. Saw her in the hospital today and her attitude is awesome. I always knew my sister was tough but this just reminded me and I couldn't me more proud of her for her courage and desire to try and take her life back. I guess I can say Nicole set the standard of courage in our family when it comes to dealing with cancer (since she was the first one of us to go through it, my Mom next then me, crazy...). One thing I admire about Nicole is her calmness through things like this. Me, I'd be obsessing with research, talking with multiple doctors, joining forums, etc..., Nicole is just at peace with where she is and just trusts that everything is going to be ok. She's definitely a warrior...


Nicole and I celebrating her 40th at the Beach Grill in St. Clair Shores MI

Looking forward to reporting some good news hopefully by the end of the week.

I also want to give my take on the election now that both tickets are complete. This one's going to be a crazy (already is).

Thanks again for reading,

Chris

Rainy Day Blog...

Bald Eagle Flying over the second hole of the Donald Ross course at Boyne Highlands

Well, I know I haven't written in a while and in the spirit of this rainy day I thought it'd be appropriate. Actually, a big reason why I think I haven't written is because of the rarity of days like today, not that I'm complaining. I have to say, the weather this summer has been very summer like which is great for everything except my lawn ;)

Now that I'm writing though, it does feel good... I'm not really certain actually why I haven't written now that I think about it. I went through that low stage while and after I was sick for those 2+ months but have been taking medication (for that) and have been feeling pretty well mentally. Unfotunately, I think I might be having a rare reaction (side effect) that is going to force me off the drug. My feet have been swelling, I believe, since I've started it. I'm not talking about minor swelling, I'm talking about balloon feet that look ridiculous (and are pretty painful too). I'd post a pic but I don't want to bogue out anyone who's reading this. Anyway, the plan is to skip a day, take it tonight, wait three days, take one more then stop. Hopefully sometime during this weaning off period my feet will start to shrink. If they don't, then I may have some major issues that I'd rather not get into right now.

I went up north last weekend with some old buddies on an annual golf outing. It was a blast and I happened to play ok despite the bad feet/ankles and my f'd up back. The guys I play with are all comedians and there were a lot of good laughs. I managed to lose another cell phone (left it in a golf cart and nobody returned it, hmmm...) but offset the cost of the insurance in skin money, a first for me :D I was really struck by the beauty of Northern Michigan this time, seeing a bald eagle fly over us as we were teeing off, amazing. We also played a course this time around that ran right along Lake Michigan called Bay Harbor. Some of the most breathtaking scenery you will ever experience. It's like you're in a whole different world up there, can't imagine how much it must cost to own a home on Traverse Bay. If anyone wants to plan a beautiful, fun, relatively inexpensive vacation, I'd have to say the Norhwest tip of Michigan - from Traverse City to Mackinac from now until Mid October would be way up there on my list...


Getting ready to tee off at the Quarry at Bay Harbor

Btw, I'm just writing this as things come to my head, not focusing on format anymore as I don't write as often...

I don't recall if I shared my last scan results. Probably because there wasn't much difference from last time except that things got a little smaller which is of course great! I think I'm all the way back from those infections thankfully. I won't allow myself to get too excited with this news however as I know that as soon as I do, something bad will probably happen, mwah, mwah, mwah... Seriously though, that's how it always happens, you let your guard down for a second and next thing you know, something crazy happens. It's a constant struggle to try and maintain an even keel with this disease. I had no idea that two of my best and closest Hodgkins warriors were going though the shit right now. First heard about Marsha today having an episode of accidentally overdosing on steroids then my friend Bekah who is dealing with some undisclosed nasty illness. My best to you both... It's tough to accept that I probably wont ever have a long stretch of good health ever again as I now realize how weak my immune system is. I mentioned that I thought the Remeron could be causing my balloon feet. It also might be from having painful ingrown toenails removed that just have never healed yet. It makes sense as my right foot is worse having both sides of my big toe removed as opposed to just the one side on my left. I've been really diligent cleaning and wrapping them every night (except during the golf trip where they were most swollen). The thing is, I had the left foot done well over a month ago. I don't know anymore, there are so many moving parts with all of this. Hard to keep track of what's causing what. The last thing (that I didn't want to mention before) is what the foot doctor told me (and that I take with a grain of salt). He said it's because I'm having poor oxygen exchange in my lungs. I tend to doubt this (right now) because I'm able to hold my breath for almost a minute and don't ever find myself out of breath unless I'm trying to run or climbing multiple flights of stairs...

I'll try and do a better job of keeping this thing updated going forward. It's a good way for me (realizing this again) to blow off steam, get things off my chest and document all of the weird things going on with my body. Not to mention, (because of this blog) I was invited to participate in a paid live phone discussion with other people who are going through refractory Hodgkins and have been treated with SGN-35 or Adcetris. If anyone who is reading this and wants to get paid to discuss your disease and past treatment, send me an email and I'll let you know who to talk to. If they choose you, I'll get a small referral bonus so we'd both be benefiting :)

Also, by the way, sorry to anyone who's posted comments on here not seeing them on my blog. I've become really lazy managing this thing and honestly, they sometimes sit in my moderation page waiting to get published. I sometimes get scammers commenting or people trying to sell stuff on here. For that reason, I've set this up so I can see what the comments are before I post them. Again, I apologize to anyone who hasn't seen their comments posted on here in a timely fashion. I don't take your comments for granted so you know. I appreciate all the kind words and prayers I can get!

So, that's pretty much all I have for now. Hope to update soon.

Chris

Good News!

Just got off the phone with Dr Ram and I guess my CT scan looked good :D He mentioned my tumors look even smaller which is shocking considering I still have major back pain and this pleural rub (even though it's getting better). Anyway, I will gladly take the news and go back to living my life without this looming over my head, what a relief...

He did mention that he wants me to go to a pulmonologist to get my lungs checked out. Apparently, the CT shows scarring in there and he's worried that one of them may collapse if I'm not careful. I do breathing exercises (when I remember to do them) and will do even more now that I know this news.

Hopefully I won't have to think about this stuff for a long time. At least until the summer is over ;)

Have a good one!

Chris

Back in business...

Well, it's been a while but I finally have the energy to update, sorry for such a long delay. I've been having a difficult time lately and blogging hasn't been really high on my list as I've kinda been in survival mode...

Being sick for so long I think took a toll on me not only physically but mentally as well. After speaking to my therapist last week, it makes sense. She said that when your body goes through trauma (i.e. being sick) the amount of serotonin one's body produces goes way down and sometimes stops being produced altogether. Combine this with some mental trauma and it makes it really tough to do anything. I've been pretty stressed about my disease returning after developing a "pleural rub" in my lungs every time I breathe. I've had this before and it was happening while they were trying to get my disease to go away before I had my stem cell transplant. I had a CT scan last week to find out if it's the disease growing or possibly another infection in my lungs. The only way to describe the sensation is to imagine the inside of your lungs as cellophane, not the stuff you wrap your leftovers with but the kind that would be wrapping a new CD. It feels like the cellophane crackling with every breath, not exactly the most comforting sensation... Sometimes it's barely noticeable, like when I'm sitting upright. Other times it's really noticeable, like when I'm sitting in an uncomfortable seat or chair where I'm hunched. I've gotten used to it though and somehow more able to block it out of my mind for the most part but that normally doesn't last very long... Ever think of how many breaths you take in one day?! Anyway, you get my point.

So, going back to all of the physical and mental trauma and lack of serotonin production... I had to do something and thankfully they have medicine for that kind of thing in the form of anti depressants (for me it's Remeron). I guess I was pretty depressed. Normally, I'd be embarrassed to admit to something like that and broadcast it across the blogosphere for the world to read. As the meds are starting to work and I'm feeling better mentally I thought to myself why in the world would I be embarrassed and not want to talk about it? I think society generally misunderstands depression and unfortunately sometimes makes it taboo. To me, this seems kind of silly as it's a medical condition that in most cases you can't control. For anyone who reads this and has difficulty getting motivated to do even simple things like getting out of bed, please go see a doctor and get professional help. I've only been taking the meds for less than a week and I already feel so much better mentally... This is actually the second time I've had to get on Remeron. The first was when I first relapsed and almost lost it. Now that I think about it, I don't think I could've gone through what I went through without the meds. It's funny for me to go back and read some of the horrific crap I had to go through and somehow be able to stay positive and have a good outlook. I think I'm generally a positive person with a healthy outlook on life but cancer has a way of swiping these things from you and sometimes you need a little help getting them back...

Anyway, now that I've spilled that, I have to express some regret for letting it go for so long... In doing so, I put aside a lot of things that are going on outside my world and neglected to keep up with things or people including my fellow Hodgkins survivors. One of them who I can also call my friend, Tim Strohmeyer, shockingly passed away two days ago. It wasn't long ago that I was writing about Tim and how he was going to Seattle to try another chance at a cure. This would come in the form of an allogenic stem cell transplant where you get someone else's stem cells in the hope that they'd recognize the cancer (because your own killer T-cells don't for some reason) and kill it off. If I would have started this medicine sooner, I would have read Tim's Caring Bridge site (which I have a link on the blogs I follow) and found out he was having some major complications with an adeno virus and GVHD that would eventually take his life. I'm bummed because I didn't have a chance to send support or even exchange a message with him. His wife Kylie was updating for him when it got bad but I'm sure she read all of the letters of support to him and there was nothing from me... So, it's something I have to deal with but moving forward, if you feel like sending a positive message to Tim's family via his Caring Bridge site, please do so. He was a great guy and will truly be missed...


Tim and his wife Kylie

Again, to anyone who reads this and is struggling with Hodgkins, another cancer or some other type of chronic illness, I understand and sympathize with what you're going through. To those that don't or refuse to try and understand, I hope that one day you will, life is so short...

All the best,

Chris

I wrote this a couple of days ago but wanted to wait to post to add pics. I feel disconnected not writing for a while. Just haven't been able to motivate but wanted to put this out there. Amazing how quickly conditions, plans, moods, outlook, motivation/s, etc. can change. I've just started feeling my "spot" in my back pushing on something when I breathe in causing a "pleural rub". I've had this before when my disease was progressing. I'm fearing that may be happening now and need to make an appointment Monday. Needless to say, I'm pretty unsettled. I just thought it interesting and maybe insightful to see how living with cancer is such a roller coaster ride. The way I feel now and the way I feel after writing the below piece couldn't be more different. Again, this is only 3-4 days ago. Anyway, this is the original update before I really started noticing this stuff in my back. Sorry so long to post anything.


Well, the last I wrote I was in the final throes of another nasty infection in my sinuses and ears. I'm glad to say, thanks to another round of Levaquin and some more down time, I finally rid myself of the crap, thank God!

I didn't have a whole lot of time to ease back into normal life as I went ahead and re did the landscaping in the front of my house, ripping out the old nasty shrubs and replacing with some rodos and low sun perennials like Hostas and Ferns. I figured I lived in Ferndale and how could you not have ferns right?!

Once I finished this project, I prepared for a planned trip out east. It was a great time! Had a chance to drive through the Adirondack State Park in upstate New York checking out Lake George and camping just outside Lake Placid. From there I headed to Salem Mass. where I was surrounded by amazing U.S. History. Every inch of that town has a story, really cool. In a wild contrast, I had lunch with Jackie at a completely organic vegan hip restaurant, about as new age as you can get in one of the oldest cities in our country, very surreal.

From there, it was off to Boston for the first time for me. What a great city. Couldn't get over how nice everyone was even when I went to Fenway Park with my olde English D hat on! It helped that the Tigers went down with a wimper again so I think the fans gave us a break...

After Boston, It was off to Martha's Vineyard and The Allen Farm for a really lavish beautiful wedding although on the day of, the weather would not cooperate and the seas were angry and the rain and wind were wreaking havoc on the festivities, or you would think... Thankfully, the folks putting the wedding on were more than prepared for this with an tight tent with heaters blasting underneath and even a separate tent for bathrooms. It's too bad because the view I saw the next day was unbelievable. I'll post some pics to get an idea.

All in all, I can honestly say Martha's Vineyard definitely lives up to the hype. What a beautiful place, all the way around.

The trip was a nice departure from my normal routine of sleeping in late and pretty much lying in bed for most of the day sick, not being able to do much... I had to try two different antibiotics for my second infection of the sinuses and ears and after my round with Levaquin was done, I found myself so listless I could barely make my scheduled clinical appointment at Karmanos. Turns out, when I had my blood drawn, the results showed my hemoglobin or red blood cells at 7.8, below the acceptable level of 8 and had to stick around for an infusion or two units of RBC's. It was an exhausting 11 hour day but it did give me a boost and definitely worth it. I did have my tough moments on the trip but overall I'm doing much better and trying to enjoy my newfound energy. I've got some more projects lined up here at the house trying to finally get it to where I want it.

There was a time I was really struggling with the constant illness and must admit it did bring me down for a bit there. I've managed to pull myself out of it and ready to start enjoying life again!

I want to continue to travel as much as I can and enjoy my friends and family here in the D. Both my Mom and Rich are still fighting on and an inspiration to me seeing how much they struggle sometimes. Rich was in the hospital again and my Mom caught a nasty bug and she's been dealing with nausea and vomiting which I know is no fun, ugh. Glad to hear she's better today and found out one of her nodes has disappeared and the other one is still shrinking, good news! Plus, just read an article today about a new drug coming out for HER2 breast cancer called TDM1 which is supposedly a breakthrough so it's nice to have something else available just in case it's needed.

So, that's my update, I'm sorry it's taken so long. Hard to write when you're feeling down for so long. It's so nice to be motivated to do things again and having the strength and energy to do them!

Without good health, life can be pretty crappy I must say. Here's to good health for a while!

Chris

Glad I re read that by the way, reminds me that no matter what this is in my back, things could be much much worse. If it is progression, I can at least look forward to trips to New York and Houston/Austin so it's not all that bad. Things are going to be ok :)

Finally feeling better!

II'll let the title speak for itself, don't want to jinx myself ;)

Thanks for the support!

Chris

Frustrating...

Well, I think I had maybe a week of feeling better and unfortunately, find myself now fighting another infection, this time in my sinuses. It seems as if the pneumonia decided to move north into my face, head and ears. Just like I've never had pneumonia before that last bout, I've never had sinusitis or sinus infection. I can't hear out of my right ear right now and it feels like my face is going to cave in, unreal. I'm starting to get a little more energy it seems after getting some different antibiotics (amoxicillin) but the pressure seems to have increased in my head. I haven't really been able to do anything lately but lie around, getting pretty good at that lately, ugh. My appetite is pretty weak too but trying to force at least two meals and plenty of fluids.

I know there are greener pastures ahead, just have to wait this out. My body is adjusting to something right now and I have to let it run it's course. I keep forgetting I have a brand new immune system that hasn't been exposed like my old one had been obviously.

Makes me wonder if something was missed after my transplants... Most people get new immunizations after a period of time (I think a year) after their SCT's. My doctors never even brought this up with me... Maybe I dropped the ball and didn't push hard enough (although I have mentioned it to both Dr. O'Connor and Dr. Ram (I think). I wasn't around in Seattle a year after I went through the "shit" as I like to call it. Maybe the lapse and new doc's let it slip through the cracks, I don't know. I definitely plan to bring it up at my next clinic you can be sure of that. In fact, I think I'm going to post the question right now with my Hodgkins group on Facebook. Curious to know how many people get the shots after transplant... I've heard both good and bad arguments as to get the shots or not. It's been a while and I really can't remember the stronger rationale but feeling like this for almost two months now makes me curious as you can imagine. Hell, I'm not even sure there are shots to protect me from these last two infections... I guess I'll find out.

So, other than dealing with this BS, it's been nice to be "home". I did manage to get a round of golf in last week before this got bad and it was a blast! I'm really looking forward to some good fun golf outings this summer having all my old buddies here who I've been playing with for years. It's funny, everyone ages and supposedly gets wiser (golf is not only a physical game but quite a mental one as well) and you think we'd all get better as the years go by but for some reason, the scores are exactly what I remember them to be 10-12 years ago, ha! Maybe it is true that you learn tricks out there but your body doesn't quite work like it used to so it all balances out, or something like that...

Ok, now that I've been able to get that nonsense off my chest, I think I'll go back to watching the Tigers try and snatch defeat from the jaws of victory once again. It's been a strange year for the boys so far. Glad it's still early...

Here's to a happy post next time :)

Chris

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

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 naïve 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

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

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!!!

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

Spoke too soon

Well, have to put my aspirations on hold, started feeling weird a couple of days ago, dizzy, headache, chills, sweats, coughing and it's only gotten worse except for the congestion thankfully.

Just wanted to document this and note that I only took one RAD001 pill last night to see if that would help. So far, no go...

Hoping to feel a little better by tomorrow.

Insomniated

Yeah, having a little trouble sleeping again and thought maybe I'd try and write myself to sleep. It's around 4:30 a.m. and my covers are in a knot from tossing and turning...

First, wanted to say that Rich is out of the hospital and back home. They still don't know why he keeps having the breathing (or not being able to) episodes but hopefully after consulting with some other doctors, they can determine what it will take to keep him out of the hospital. I just found out through a friend the other day that there's such a thing as CHF infusions that are supposed to alleviate a lot of the downsides from the ailment and give a better quality of life. Hopefully it's a viable option and will do some good if only until they figure out a better solution.

My Mom keeps trucking along through her chemo, couldn't be more proud of her for what she's had to deal with while battling breast cancer. I worry a lot about her and the stress she's had to deal with while going through what she's going through but if anyone can deal with it, it's her. She is the ultimate fighter and know that the chemo is working and hopefully by next year, all of this will just be a bad memory. Hoping to find out some information as to when her first post baseline scan is to see how the treatment is doing for her...

I guess these are the two things that have been prominently on my mind lately and probably a good explanation as to why I've been struggling to sleep. Another is that I took a longer than normal nap today where I was totally out of it for over two hours. I also think the time change has affected me as my routine has been to chill or nap right before it got dark out and now that it's getting dark later, have been lying down later and finding myself wide awake at 2 a.m., not good. I've got to break the chain and figure out a way to trick myself from taking a chill/nap so I can actually be tired when I go to bed, hmmmm...

Despite this, I'm happy to say that I continue to get physically stronger. I'm actually working out occasionally with dumbells and doing dips and push ups along with my normal remodeling projects which can definitely be a workout. This said, I'm proud to be working on two homes simultaneously in two different states while still managing to get out and have fun once in a while. The latest project has been the kitchen down here in Florida, and after a few weeks, I've finally hinged the newly refaced cabinet doors back onto the newly refaced cabinets and have to say it looks a lot better! Yes, it's been a LOT of work, first buying the wrong kit and actually going through one of the stages before I exhanged that for the right kit and proceeded to go through another seven or eight steps if you count taking down the old stuff and removing the hardware, etc... In any event, I'm looking forward to posting some before and after pictures once the appliances arrive. BTW, for anyone thinking of buying appliances at Home Depot or Lowes, you might want to take a look at Sears as they are by far the least expensive by a longshot. I think I paid as much or less for the entire set than most people pay for just their refrigerator including; stainless steel: 18.2 cu feet fridge (basic top freezer what I've always had), nothing fancy but it looks cool and futuristic, basic dishwasher that would've been high tech 10-15 years ago, a sweet electric oven that doesn't have the glass top like I've had but the old school coil burners that probably aren't as practial to clean but seem to heat up the pans much more efficiently than the glass top types and finally, a sweet modern stainless range hood/fan/light. I'm so excited to get these shipped but unfortunately have to wait until 4-11, oh well. Gives me time to install the new faucet, put up the glass mosaic backsplash, build a celing column to give the rooms some separation and finally paint while not forgetting to rip down the ha-nous industrial fluorescent tube lighting that's been in there since they built the place in the late 70's. At first, it's hard to get into a project like this because it's all boring prep work. I had to fight myself to do it and that part probably took the longest because I was so bored with it. Once I was able to get into the actual transformation portions of the project (i.e. base coat, glaze, then clear coat, then actually being able to hang them back up after finding the right hinges and hardware, that part seemed to fly by and I was actually staying up late doing it despite being exhausted and having a sore back. Being rewarded for your hard work is a very sweet feeling I must say and my reward will be walking into the kitchen in the morning, opening my fridge, grabbing my coffee and knowing where everything will be and having counter space to make the rest of my breakfast and to actually sit down and enjoy it while surfing on this computer. I'm realizing how important my fung shui is to my well being and I haven't even read the book! Everything should have a place or a function and sometimes less is more, especially when it comes to countertops. Don't know how I got diverted into a home and gardens piece but maybe I'm starting to get tired!

This leads me to me next thing that's been spending a lot of time in my thoughts and that is "life after cancer". Yes, I know that sounds a little bold and maybe a little too presumptuous but all of the markers that the cancer is still in me really haven't shown up in a while except the occasional twinge (like I have right now) in my former hot spot in my back (retrocrural area for you aspiring doctors or nurses ;). I have an occasional beer or glass of wine now without even thinking about it (well, if only for a couple seconds). It's been so long since I've experienced any pain after a drink so again, I'm feeling good going into my next scan on the 29th hoping for my first clean scan since my post stem cell transplant which was B.S. anyway if you ask me but that's another story...

I also think slowly but surely, I'm starting to get my Mojo back which can take on many different forms. For me however, it's all of the above. I feel more confident for one. Just a few months ago, I stepped on the scale and it read 155 lbs. I was just getting over getting sick but I was still in shock. Of course, I freaked out thinking the cancer was firing up again. Thankfully, the freak out lasted a short while and I then started to get busy making eating one of my jobs, literally! I was determined to put the weight back on after the weigh in and a comment from someone who saw me tell me that they were shocked at how thin I was. Now that I look back on it, it basically boils down to the fact that I'm single, busting my ass as much as I can on these projects and because of the side effect of "anorexia" (yes, it's a legitimate side effect from Everolimus) I was tending to eat only when I felt like eating (which wasn't much) and as result, I got super skinny and lost a lot of strength. Thanks to some wonderful natural rememdies and a focus on eating at least three meals a day that contain meaningful calories I've gained 15 pounds and now tipping the scales at 170, haha. I'd like to add another five pounds of muscle and thus the starting of weight training. Going to continue Yoga when I get back to the D to take advantage of a groupon I bought last year for a $1 per session, what a deal!`

The confidence isn't only coming from my appearance improving, I think I have a better outlook on the future as I've had a decent stretch of feeling ok. I can now look at myself at least a few years down the road with confidence which is something I haven't been able to say consistently for a while. I've also come to realize that it's probably a good time now to go back to seeing a therapist, just me, to deal with what has been a battle with post traumatic stress disorder or ptsd. When you're in it (fighting for your life, losing everything, getting back up on your feet, getting knocked down again, etc... it takes a tremendous toll on you. I can understand what the vets returning must deal with although on a different scale. I've lost family members and friends who have no clue what it's like to deal with what I've been through and because of that, I've tried to go on pretending that there's nothing wrong and I can tough out the physical and mental ailments by just living in the moment and medicating myself when the anxiety or pain gets to be too much. I'm thinking I want someone to put all of this into an objective perspective as part of my personal edict of getting my Mojo back . I've mentioned getting my real estate license which is still on the list as soon as the kitchen is done but I think I want to do something a little bigger in addition. Something that is going to help someone else out who might be in my position say 3-4 years ago. Or, something for someone who hasn't even developed Hodgkins Lymphoma yet in the form of fundraising (or working in some capacity for a charity that exclusively deals with Hodgkins). I think I am well enough now to contribute to society at least on a part time basis and see how it goes from there. I know with my sales and marketing background not to mention my experience being a cancer survivor, I can help raise awareness and hopefully money to fight the disease and better yet prevent it (because that's where we all should be focusing right now is prevention rather than treatments, except for those that are sick of course).

I didn't realize this was going to be this long and would have lasted now until 5:48 but that's one good thing being on my own "flex" time if you will ;)

While I don't expect to accomplish all of this tomorrow, I think everything I wrote about here is attainable and another step into normalcy as it were. I have some fun goals I want to accomplish too like paddleboarding and hopefully scuba diving in the next couple of months along with polishing my golf game and getting back on my bike. I'd like to travel a bit this summer as well, hopefully outside the U.S. with an eye on going back to Hawaii to visit my buddy Mike and cousin Jeff in the fall.

It wouldn't be fair to write this without the one main caveat however and that this is all contingent on a good scan on the 29th where I can continue the RAD001 and hopefully buy tons more time on it (say, another year or two maybe?, please?!).

Even if the scan isn't good and I have to try something else, if I can keep my mind strong, and continue to keep my body strong, there's no reason why I can't move forward on most if not all of these goals.

Here's to getting some sleep and waking up with the energy to take that first step...

Chris

Rich back in hospital...

Got a phone call from my poor Mom earlier this afternoon and Rich is back in the hospital. It started early this morning and he couldn't breathe again. I guess his ankles were really swollen, not good. Hard to hear my Mom so scared, wish there was something I could do. Hoping for the best, hoping they can finally figure out what in the hell is going on.

Hard to muster up any good cheer for St. Paddy's, no big deal. It'll be here next year...

Back to somewhat normal

Well, good news for now, Rich is out of the hospital and seems to have a game plan with his doctors. He and they think it's a problem with his pacemaker so hopefully Medtronics can get it right.

As for me, I've just been enjoying life down here in Soflo while continuing to work on my place. I've had a couple of visitors from up north which was fun. Had a chance to drive up to Lakeland again with my buddy Todd to see the Tigers at Joker Marchant Stadium. It was fun but a pretty long day with an almost 4 hour drive each way! It was pretty crazy coming back, had the top down rolling along when all of the sudden we drove into a massive rainstorm (while the top was still down!). It was pretty weird as the rain really didn't hit us until we slowed down or stopped. If I was a physics major I'd probably be able to explain why the rain didn't hit us while moving or you can google it if you'd like but have to say it's pretty neat driving through the pouring rain in open air and not getting wet ;) The next scene was pretty scary though... The rain had stopped and having a chance to get a grip on practicality, I decided to pull over and put the top up. After getting back on the road and driving around 65, I looked in my rear view mirror and saw a blackish looking cloud behind me and what looked like a funnel cloud coming down from the sky. It wasn't completely connected with the ground but was swirling around. At first, it didn't register as I think I was still recovering from the driving through the heavy downpour incident. About 5 seconds went by and I looked back again and this time yelled over to my buddy and he saw the same thing I did. By now, the reality had set in and I started to freak out having visions of this tornado coming up on us and ripping us right out of the car! I mean, those things travel over 100 miles an hour right?! I asked Todd what we should do and his response was "find a ditch", I nervously proceeded to laugh my ass off... Luckily, the GPS told me to make a turn and when I did, looked in my rear view mirror and the storm was now going the other way and it was clear behind us, whew...

After taking the next day to recover, had a chance to see my good friend Bekah and her crew, Katie, Melissa and Karen who are all sweethearts. We went out on Atlantic for dinner and some drinks/live music after and it was pretty neat as there was a cycling race happening on Atlantic Ave. They closed off the street and made a loop, maybe a mile not sure but those bikes were whizzing by at some pretty high speeds. They were bunched up pretty tight too so when they rode by, you would feel the breeze so to speak... I didn't see it but there was a crash where some guy got jacked up pretty bad, I don't know how I missed that. Anyway, it was a fun night and glad to see my fellow Hodge warrior Bekah :)

So, I guess the annual Delray Beach St. Paddys parade is happening tomorrow. Gonna be a zillion people packed in, but it's a blast and you have to see a parade on St. Paddys right?! I missed the parade last week in Detroit in Corktown but judging by all the pictures on Facebook and knowing it was a nice day, I wish I could've been there, it's been a while since I've been to the parade on Michigan Ave.

So, that's about all I have time to write about for now. Going back to refinishing my cabinets. Bought this kit made by Rust Oleum called Cabinet Transformations and so far, it looks pretty good. I already used the countertop kit which turned out ok and if this works, I'll have a new kitchen for around $350, not bad.

I have my PET/CT coming up on April 5th. If all goes well, it'll be my one year aniversary on RAD001 or Everolimus. Feeling pretty well still, taking it 4-5 hours at a time mostly. I've figured that this is the amount of productive time I can have before getting tired and having to lay down or relax. Think I'll put off the cabinets for a bit and go out by the pool and do just that, it's such a beautiful day :)

Happy St. Paddy's!

Chris

More prayers Requested

Rich is in the hospital again just found out. It was 5 am and he couldn't breathe again. Tracy his daughter took him in to troy Beaumont where hopefully a different doctor may be able to figure out what is wrong. If anybody knows a great heart specialist in the Detroit area, we would greatly appreciate any referrals. This is getting really scary, keeps getting worse. I dont think his heart is doing much, its mainly the pacemaker working rt now, ugh. My poor mom too, as if she doesn't have enough already to worry about. She's having the cumulative toxicity effect from her chemo now, remember it well. Once it builds up in your body, it really wears you down and makes it even hard to think (chemo brain).

Thanks for thinking of us,

Chris

Stolat Mom!

I just quickly wanted to wish my Mother Cindy a late happy birthday! I wanted to add a pic but my computer is down, sorry Mom! Anyway, I just wanted to say how important you are to me. You are my number one advocate and feel so lucky that you're my Mom :)

Your light shines brightly, you are loved by so many... You always put everyone else's needs before your own, especially Nicole Rich and myself. Your have the biggest heart that I know.

I love and appreciate you very much...

Wish I could've done a better job of this but its not easy posting on this phone, doh!

Your favorite son ;) Chris

Good Update

Well, Rich is out of the hospital and back home, things are back to "normal" if there is such a thing, haha...

As for myself, I just wanted to say for the first time since I've been going down the C road, I can honestly say that it's gone or is taking a long break. For the first time in what seems like an eternity, I feel like a normal person (relatively speaking) again. Yes, I still do have issues like a messed up back and chronic fatigue but I've somehow found a way to weave these things into a normal life. There is a caveat to the above statement however but to me it's irrelevant. I might very well have small active disease in me (scans next week, will find out for sure) but even if I do, it really doesn't matter. What matters is that I'm once again looking ahead (in a healthy way, still living in the moment of course) and making plans for myself. I think I'm going to finally get my real estate license down here in Florida and Michigan as well. Since I've been in sales my entire professional career I thought real estate would be perfect as I'd work for myself and could ease into it as conditions dictate. I think it's going to be a fun new endeavor and a good way to dip in and out of being a professional and also a cancer survivor. I've mostly remodeled two houses now and as I'm finishing up, think it's time for me to once again pursue a somewhat normal career. We'll see what happens...

So, tomorrow I'm going down to Miami to see one of my all time favorite bands, Radiohead! I've been really fortunate to see some great shows this winter down here like My Morning Jacket and G Love and Special Sauce and looking forward to seeing the Black Keys in Detroit next week. Last week, I was invited to see Electric Light Orchestra at the Seminole Casino in Coconut Creek. I remember their music as a kid hanging hanging out at my Auntie Vi and Uncle Felix's place during the holidays. We'd be up in my Godfather Pat's room (I think, long time ago) and remember them playing ELO albums and everyone would be dancing, what a trip...! When I heard the band playing some of those songs, it was pretty cool and surreal. I have to say, they sounded really good for a bunch of old farts, haha.

Looking forward to a great night tomorrow and a continued fun winter down here in Sofla!

Cheers,

Chris

Prayers and Good Vibes Requested

My stepfather Rich had to be taken to the emergency room again within the last hour. He's having trouble breathing again and was just in the hospital for the same thing a couple weeks ago. This is getting pretty scary and my Mom is really upset.

He just can't seem to get better... They put a another lead on his pacemaker hoping he'd have more energy but it seems as if things have only gotten worse. His lung keeps filling up with fluid, ugh...

I hope they can figure out what is wrong and he can get back to feeling better because it's been a while.

For my family who reads this, I'll make sure to try and update as the news becomes available.

Thanks,

Chris

Smooth Sailing :)

Hork and me at Binks Forest in Wellington FL

Just wanted to quickly check in as realized it's been a while. I'm still feeling pretty well, so well that I just finished playing golf three days in a row with a buddy who came down to visit from New York. It's amazing how much better I feel this year compared to last and I'm so grateful. My back is getting stronger and stronger as well as the rest of my body. I'm still gaining weight which is great. Things quite frankly haven't been this good physically in a long time :)

I'm sad to say a fellow Hodgkins Warrior and legendary blogger Hillary St. Pierre sadly passed away I've just learned. She was very influential not only as an advocate for Hodgkins but for the problems we still have with our Health Care in this country. To highlight her impact, Hillary had 5000 hits on her blog when she passed. I'll miss her passion and fight not to mention her entertaining and enlightening posts. My sympathies for her husband and son... please feel free to check out her blog link below "Baldies Blog". Hillary will definitely be missed.

I also wanted to give a shout of support for my friend Marsha who is again struggling with her fight. Unfortunately, this is another sad insurance story. Because Marsha has been so tired and overwhelmed by her treatment, she missed a deadline turning in paperwork to her disability carrier and they canceled her insurance. Believe me, when you are feeling like crap, the last thing you want to deal with is insurance issues or administrative issues period. Why should a sick person have to deal with paperwork, phone calls, follow ups (because God knows you don't always hear back from people promptly when you leave a message). My Mom has just recently dealt with this when she first started. It makes you think that there has to be a better way we as a society care for sick people. The everyman for himself/herself shouldn't have to apply here, in other words, I just have serious issues with capitalism being combined with medicine. There has to be some kind of hybrid system where sick people aren't falling through the cracks. We aren't animals, we're humans. We should be taking care of each other. We're the greatest nation on earth, we should be able to figure out how to do this... So Marsha, I hope that you get word soon whether they'll pay for your Revlmid.

Stepping down from my soapbox, I wanted to share a creepy story, or a story about a creepy critter. Last night after getting in from grabbing some food after golf, my buddy went to put his clubs in his travel bag and as he looked down, the biggest ugliest spider I've ever seen decides to pop out of his bag. The look on his face was blank mixed with sheer terror. Because I was a little nervous myself, I do what I sometimes do in situations like that and started to laugh hysterically! Thinking on my feet however I just told him to drag the bag outside (the spider was still attached) and eventually the thing will just walk away. So, he drags the bag outside and it slips out of his hand and the spider, like a small dog jumps from the bag to the ground and bolts off over to my old oven fan. I had to get a picture of this thing, it was the biggest spider I've ever seen! Turns out it was a banana spider and apparently they're harmless. Lots of creepy critters down here in sunny Florida ;)


How would you feel knowing this guy was sleeping in your house!

Thanks again for reading and keeping up with me. I had been wanting to do a post regarding starting over and think I'll talk about that next time. Think it's time for me to take some steps to hit the reset button so to speak. Look forward to talking about that...

BTW, I almost forgot to say how good it was to see my cousin Ken when he stopped by a couple of weeks ago (I guess time has really flown...). Him and his dog Nathan made a pit stop down here on their way down to Key West for the Month. Hoping you guys are having a blast down there!

Ok, time to rest this sore body and get some sleep.

Chris

Grateful...

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!

Cheers,

Chris

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 Lymphoma.com, 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 ;)

Chris

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