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