Wednesday, August 22, 2012

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,


Tuesday, August 14, 2012


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,


Thursday, August 9, 2012

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.