Tuesday, June 28, 2011


Trying to breathe and relax. CT scan tomorrow, feeling decent, no idea how this is going to turn out.

Cautiously optimistic while being realistic. Remission would be incredible, reduction would be awesome, stable disease would be ok, progression would of course suck.

No matter, life goes on.

Details on results and other stuff like my first U2 concert in my next post.

Adios Mi Amigos

Wednesday, June 22, 2011

Insomnia Post

Hello Everyone,

Just thought I'd check in, can't get to sleep. While this is nothing new, I remember that I used to do these posts during bouts of insomnia and they actually would help me fall asleep, so here goes!

While the back pain is still staying away, I've been dealing with some side effects from the RAD001. One of them is mucositis or painful lesions inside my mouth as well as something called angular chelitas which is a sore that won't heal on the corner of my mouth. At first, I thought it was just chapped lips but when I showed Dr. Ram, he told me it was a fungus or bacteria that is commonly caused by the drug. Just a couple minor but painful reminders that I'm still in treatment every time I eat, talk or smile, nice... I also contracted some kind of bug that has knocked me down pretty hard. I think it's a combination of allergies and the bug and the result is nasty headache, stuffed up, sore throat, cough, lost voice and complete exhaustion.

Funny, before diagnosis, I never used to get sick!

I know my last post was nice and rosy and truth be told, I was feeling really well when I wrote it. It just never seems to last very long... I guess I'm used to and it really makes me really appreciate it when I'm feeling almost totally healthy. In fact, it's now the next morning (writing this did make me sleepy and I did fall asleep before finishing, ha!) and I'm feeling better. I think one more day and I'll hopefully be back strong. The plan for the mouthsores is to go get some lidocane mouthwash and canker sore medicine (the sores feel like canker sores although much worse). The thing on the corner of my mouth seems to be healing as well (been using neosporin) so maybe me venting has helped something (like I say, it's always better to get it out!).

So, the plan for today is to go to an outside blood draw facility where they're going to draw like 16-20 vials to be sent Fed Ex to Baylor University in Houston. They'll then test my blood for EBV and if I'm positive, they'll somehow start growing my own modified killer T cells which are supposed to hunt down and kill any Hodgkins cells in my body. I'm also going to resume working on my bathroom which is almost done! In fact, I took my first proper shower here two nights ago and it was like a dream! I think by the next post I'll be able to post some before and after pictures. Next up is the kitchen which shouldn't be anywhere near as bad. Good times ;)

I think I'm ready to take a road trip or trip in general to break the monotony here. It's rewarding and makes me feel useful to be working on something (this house) but truth be told it's pretty stressful living in a place that's under construction. It's impossible to keep it clean and I can never find anything! I think I want to get away from this for a bit to recharge my batteries. Maybe a trip up to Northern Michigan might be in the cards, we'll see. I'm waiting for my convertible to be fixed as I just found out the transmission is shot. In fact, it happened right after my last appt. at Karmanos and had to drive home all the way in second gear! I have a mechanic I found last year who happens to live in Windsor Canada and his prices are almost half of anyone around here so I decided to take the car to him last week. It was pretty interesting driving all the way to the tunnel from Ferndale through some of the worst parts of Detroit as I had to take side streets all the way. You can imagine some of the looks I got driving 20 mph in the ghetto. Most people doing that are there for the wrong reasons I'll just leave it at that. Thankfully I made it and should be picking up the car tomorrow. It's going to take a nice chunk out of my savings but I've committed to that car (actually need it for Florida) so I'll bite the bullet and hope nothing else major happens to it anytime soon.

Alright, that's all I've got for now. For those who read this that I haven't talked to in a while, hope all is well and look forward to catching up soon.

Happy Hump Day!


Saturday, June 11, 2011

Summer is rolling along...

Chili and I driving down 75 with the top down on a nice warm evening. Probably not the safest thing to do, taking a self portrait while holding my dogs chin driving 70 mph but that's how I roll I guess!

I think I've been neglecting my blog lately which is a good and bad thing. Good because every waking moment I have lately has been spent either working on this house, napping or hanging out with friends. Not to mention, I'm trying to finish this great book called "Life" written by Keith Richards of the Stones. The title is a little misleading as you would think it would be some type of self help/awareness - whatever kind of book. Not quite... It's basically a firsthand account from Keef as he witnessed and was part of the Rock and Roll Revolution and the evolution of the Rolling Stones as they were one of the main drivers of this movement. The book has been fascinating to me being a lifelong Stones fan... Anyway, times that I would be updating this blog have been spent trying to turn a few more pages in the almost two inch thick hardcover. These days, post cancer diagnosis, I have a hard time concentrating on anything for more than an hour or so. Call it post cancer diagnosis/treatment induced A.D.D. I guess. Of course this is my own unofficial personal un-researched diagnosis but have a feeling if I looked it up would find plenty of information out there regarding this and people who have refractory cancer...

I'm writing this, staring out of my dining room window at an overcast sky on a lazy Saturday morning. The weather has been so weird here as per typical of Michigan. Earlier in the week, the temperatures got up into the mid 90's with some serious humidity. Of course, I have no air conditioning so I was pretty sleep deprived there for a couple of days. I decided to rig a window air conditioning unit for my room and sure enough, as soon as I did, the temperatures dropped down into what I understand was the 40's on Wednesday! So, the old saying goes, if you don't like the weather in Michigan, just wait a second and it'll change (or something like that...)

Honestly though, I've been enjoying myself and feel like there's still a ways to go with this summer as it started late. It went from winter right into summer, really not much of a spring which was weird. I'm certainly glad the warm weather is here as I've grown pretty accustomed to temps at least over 60 the last few years. Guess you could say I'm a little spoiled (but in no way do I feel bad about it ;)

My life right now seems to be in transition in both my physical being as well as my personal. The personal I will keep private as I can't put everything out to the blogosphere! As for my physical well being, I have to say this is probably the most normal I've felt since pre-diagnosis. The back pain is mostly gone and when it's there, very faint. I have difficulty on certain days with my energy level but think there's a direct correlation between that and the type of sleep I get the night before. Sleep has been pretty elusive lately unfortunately. It's a catch 22. Sometimes I'll be tossing and turning until 4-5 in the morning. There's a lot of activity in this neighborhood so if I don't get my sleep in prior to 10 a.m., there's not much of a chance I'm going to get much sleep beyond that. Come 3-4 o'clock, I can barely keep my eyes open and usually have to go down for a nap to avoid being a complete zombie. This of course affects my getting to bed the next evening and the cycle repeats itself. I can sometimes break the chain, say like over the weekend and find myself pretty well rested this morning after a decent nights sleep. It was a pretty weird sleep however as I rented the movie Black Swan last night and it creeped me out while watching it and carried over into my dreams pretty much all night (I think). What a great movie though, had me on the edge of my pillow! Sometimes, I feel like Natalie Portman in that I'm living in this dream or distorted reality. On the surface, you look at me, talk to me and everything seems pretty normal. It's what goes on inside my head... Am I supposed to be doing this well when I see others around me who have the same disease struggling and even passing? How long can I sustain functioning relatively normal before the beast decides to attack again? It's a constant challenge to stay in the moment. I think it's the reason why I try to keep myself so busy. Some of my friends and family worry that I might be overdoing it which may be true. There's a reason for it as I explain to them; it helps to keep my mind where it should be and that is in the present here and now. I feel that right now, I have a perfect grip on where I should be and hope I can stay "here" for a while!

FYI, in the spirit of trying to stay one step ahead of the Hodge, I've been corresponding with the nice folks down at Baylor University in Texas as there are two brilliant doctors down there working on some amazing therapies for refractory Hodgkins. I started with Dr. Bollard who has developed a vaccine for Hodgkins survivors whose tumors test positive for EBV virus. She has developed a treatment where she takes your blood, modifies it somehow, and uses it to grow specialized cancer killing cells that your own immune system makes that will directly target the EBV virus which is contained in the tumor. It takes a few months to grow these killer cells in a lab then they infuse them back into your body. The results for heavily pre-treated Hodgkins patients has been remarkable. Two of my friends are trying it, Marsha and Bekah and can't wait to hear about their results. Unfortunately, my tumors are EBV negative. However, there is another brilliant doctor (Dr. Heslop) who is developing a similar treatment that only requires my blood to be EBV positive not my tumors. This is also a vaccine treatment that turns my killer T cells into Hodgkins seeking destroyers but with a different target. Instead of seeking out EBV virus, it seeks out a certain protein marker found in most Hodgkins cells, CD30. I know I'm CD30 positive as it's one of the requirements to get into one of my previous trials, SGN-35 (the one that almost paralyzed me!). While I'm not overly confident in the chance for success with this (my disease rarely displays CD30) it's another breakthrough in gentler less toxic therapy. I am happy to participate in any study that allows me to live a relatively normal life while battling this disease. I also found out that Dr. Bollard is developing a trial for those who's tumors are not EBV+ so I think I'll have two additional options in the months ahead.

By the way, the RAD001 technology is no slouch, it's just that I can't really explain (nor have I taken the time) how it works! ;) I have a scan next month so we'll see if this is all a fluke or it really is working! I say that anything that allows me to feel relatively normal is working (or anything that keeps the back pain away).

Feels pretty neat to be participating in this crazy science!

I hope you all have a wonderful weekend and look forward to writing more posts like this :)


Friday, June 3, 2011

Life has normalized, finally!

Well, I guess that's all relative but for me, I can finally relax a bit, thank God. I still don't have a fully functioning bathroom but can see the light at the end of the tunnel. I've been in one place for more than a few weeks, nice not to have to deal with the hassle of flying. Most importantly, I saw Dr. Ram this Wednesday and the results of my blood draw were (for me) a remarkable, 67K! We were both in shock and he was asking me if I quit taking the drug or had I taken a couple days off and of course told him no. So, I think my body has finally adjusted to the RAD001 and at least clinically, I'm still noticing a big improvement in my back where I am almost virtually pain free now!

I can't tell you how blessed I feel...

Hopefully this will at least get me through the summer and beyond.

Time to go attempt to go play golf for the first time in a long time.

This is awesome!