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 :)