Wednesday, July 27, 2011

Platelets holding on

Went to Karmanos today for blood work and still able to continue on the trial with platelets at 37K. Have to be really careful with my platelets so low as I bruise really easily and the bloody noses continue. I've learned the effectiveness of oxyclean for the pillowcases, that stuff really works!

Really excited to be leaving for beautiful northern Michigan tomorrow for the golf trip. I'm going to drive home down the west coast of the state along Lake Michigan, can't wait to take some shots.

BTW, got the official report of my last CT scan and it was pretty much what they told me, stable in some nodes and reductions in others. No new growth!

Feeling well and hoping to keep it rolling...

Wednesday, July 20, 2011


I think I'm melting, literally... It's been hotter and muggier here in Michigan over the last week than it is down in Florida this time of year and that's saying a lot. The worst part is that I don't have air conditioning in my house (but thankfully do in my bedroom) and it's pretty damn draining.

I have however been able to muster up some energy over the last couple of days after almost two weeks of chronic fatigue. I guess that's why I haven't updated (too tired at night after doing my projects on the house). Maybe I'm getting used to this. Makes you wonder what people in really hot areas of the country used to do before air conditioning. Really, I think you just get used to it like I said. The key is staying hydrated. I'm well trained in this area after having two stem cell transplants and Dot as my nurse at SCCA. She was a stickler on hydration and I knew if my blood pressure was low because of it, she would make me stay and get infused with a bag of hydration before I left. I made sure to drink tons before I went in for those appointments. I wanted to spend as little time in that place (having to go every day) as possible. Plus, the infusion floor wasn't exactly the most pleasant place to hang out even though the nurses did do their best.

So, another reason I haven't updated is I never received the official report of my CT scan. They were supposed to fax it to my Mom's and Rich's place but never heard of it happening. I guess I'm not overly concerned. I know I'm probably not quite in remission but feel confident that my disease is under control. I can even have a glass of wine with dinner now on a regular basis without even a hint of pain. This is pretty major. I always knew where my disease was relatively speaking by how my side and back felt after a just a few sips. The pain always would vary and thought it corresponded with the extent of disease I had. So, in theory, right now I think I'm pretty close to being disease free and it feels really awesome I must say. I also am getting my strength back from working on the house and I can't tell you how great it is to feel somewhat strong again. I worked out while I was doing my initial therapy of ABVD and started again after my second stem cell transplant. I got into pretty good shape before all hell broke loose when I relapsed again and was almost paralyzed from SGN-35. My feet and toes are permanently damaged I'm afraid though and cant be on them for too long or they swell like balloons at night. Back to the strength though, the remodel project of the fixer house in Ferndale has been a struggle, a major struggle to say the least but I'm finally starting to see some results and have this new found strength in my legs, back, hands and arms as result. I'm really glad I did it still -- it gives me a feeling of utility and I can do it on my own time, when I have the energy...

So that's pretty much it for me, I haven't had any major exciting or crazy things happen to me lately which I'm grateful for. I had enough drama over the last six months to last me six years! I like living drama free (relatively speaking of course). Come to think of it, I did drop a sheet of drywall on my big toe yesterday and there was blood gushing everywhere and couldn't sleep last night because of the pain but today it's fine. I'm kinda used to getting beat up working on the house. I'm pretty much full of cuts, bruises, bumps (a few on my melon) but when you do work like this it comes with the territory. It's funny when you work with someone else and they bang themselves up and there's blood running, or it may happen to you and you don't even stop. Sometimes you might just start laughing. I think I've developed a pretty good tolerance for pain over the last couple of years...

Spared you the uncovered version of my smashed toe. Let's just say I'll be getting a brand new toenail as my consolation prize ;)

Forgot to mention that I'm going on a golf outing next weekend with a bunch of crazy old high school buddies and some of their friends. I was supposed to go last year but my back was way too shot to play plus I think I wasn't feeling really well at the time. This is going to be awesome, what a blessing! I remember feeling like I was never going to be able to play golf again and really being bummed about it (it's the last sport I play) but poof, I'm able to play again and fairly satisfied with how I can play which is a bonus.

Also forgot to mention that I've been reading the Keith Richards biography "Life" and have been mesmerized. For any Stones fans out there, this is a must read. Even if you don't care for them, it's still really interesting. It's a pretty thick book and I'm on page 330 or so out of around 550. Hope to finish by the end of summer. My routine is reading around a half hour a day out in the sun to get my Vitamin D when the sun is out. It's kinda ironic that I'm reading a book about a guy who for most of his life has slowly tried to kill himself (although he in no way looks at it like that) and here I am searching for ways to stay alive!

Alright, time to attempt to crash, wanted to send prayers our to Mike and the Reeds. Mike has just found out because of all of his previous treatments, he's developed a very difficult bone marrow disorder called MDS or myelodysplastic syndrome. He also found out his Hodgkins is progressing so I can only imagine what he's dealing with right now and requesting prayers for him and April if you believe in that kind of thing -- even if you don't believe, it wouldn't hurt...

Out like a light,


Wednesday, July 6, 2011

No official word yet, but...

I've been waiting to post the official results of my latest CT scan but unfortunately I haven't received them yet. I did however receive the unofficial quick read and the guess was reduction in some areas and stable in others. I probably could have called and pushed for the official reading but the truth is, I really don't care. The most important thing to me right now is I'm feeling relatively awesome despite some side effects and having a great summer!

Playing golf with buddies, finishing up just in time as the sun was setting

At the ballgame with my buddy Eric

The crazy futuristic stage at the U2 concert (which was incredible).

The bathroom project just after demo (before shot)

The bathroom almost done, thank God. Just need to tie up loose ends like painting and fixtures and I'm good to go! Kitchen comes next...

So, along with constantly working on the house, I've been really getting out and enjoying myself. Haven't felt this good in a long time. I'm really trying to enjoy it and drink it in so to speak. Living in the moment and hoping for a good tomorrow is a pretty good way to live and I've been doing my best to make this happen. I've also eliminated a lot of stress in my life which I think is going a long way toward my feeling well. Going to continue to seek ways to live well and see what happens ;)

I'm not due to see the doctor again until the end of the month or so... I think I'm just gonna continue to enjoy life and take some time off from this cancer stuff if I may.

I feel truly blessed :)