Tuesday, February 27, 2007

Hemorrhagic cystitis?!

Hey everybody!

Tomorrow will be Day 50 post-transplant! Unfortunately, as you probably know by now, I got my first semi-serious complication last week with a CMV infection. The good news is I still feel good overall and I've been getting to come home in the afternoon/evenings the past few days. The bad news is that the CMV has not been completely eradicated and the virus was still detected in my bloodstream as of yesterday's blood draw. So for now, I have to continue with the twice a day IV ganciclovir and my next blood test for CMV will be Thursday. So please pray that this will be negative on Thursday. Ganciclovir is supposed to be very effective in treating CMV but has the bad side effect of decreasing my white blood cell counts, so ideally, I don't want to be on the medication for too long.

Now, we'll play scenario games again. Imagine this time that as a reward for a long, hard week at the office, you and your lovely wife enjoy Belgian chocolate dipped strawberries and mimosas on late Saturday morning after which you hop in your fire red Lamborghini and motor to the day spa. There you enjoy couples total body massage/facial/wax/manicure/pedicure/body wrap treatments given by Angelina Jolie and Brad Pitt (in my case, either one would suffice... you know, Brad and I would talk politics and sports). Then, you take your private jet to partake of a late lunch at, let's say, Spago, prepared by your personal chef, Iron Chef. You do some shopping on Rodeo Drive and buy a couple Rolexes or Pateks and consider buying a poodle to go with those fabulous Manolos. Now it's time to enjoy a romantic dinner at your favorite restaurant on Mars with an incredible view of Earth. You make it back just in time for courtside seats at the Super Bowl/World Series/Stanley Cup finals topped off with a private performance by the "All-Stars" of the world's greatest symphonies including a world premiere of a ballad written and performed in your honor by Luciano Pavarotti.

Now, let's change the scenario a little. Instead of chocolate and alcoholic beverages on a Saturday morning, imagine that you have to urinate; instead of a Lamborghini, you have to urinate; instead of total body treatments, you have to urinate; yep, instead of Angelina and Brad, urinate; instead of private jet, Spago, Iron chef: urinate. I think you're starting to get the picture. Welcome to the world of hemorrhagic cystitis!! Sounds fancy and complicated doesn't it?! It's really about urinating, and on top of that, there's some blood involved. Really I'll be sitting there minding my own business happily picking my nose or something as intellectual as that and suddenly, without appropriate warning, my urinary apparatus and brain will shout "You better find a toilet for me in the next three seconds or I'm going all over your pants buddy! One... two..." This happens every 20-30 minutes. In all seriousness, this hemorrhagic cystitis thing is supposed to be a fairly common complication after a bone marrow transplant. It involves inflammation of the bladder and can lead to urgency (feeling the need to pee all the time), frequency (going all the time), burning and pain (not fun), and hematuria (peeing blood... yikes!). It's rather disconcerting seeing blood come out, but fortunately, this whole thing is supposed to be self-limited. So for now, I'm told to drink lots of fluids and ride it out. Unfortunately, this thing can last up to six months (!) which would be a worse case scenario. Again, let's just hope and pray that my doctors don't have to end up putting instruments up my you know what and do "bladder irrigation."

So my advice to you: try to avoid getting hemorrhagic cystitis. And if you see me whizzing by you (pun intended), it's not because I'm being rude. Just get outta the way, okay?!

Joe

5 comments:

Anonymous said...

Gee whiz Joe (pun also intended), you're making me laugh and cry at the same time.... Didn't they ever tell you that once you get the XX genes, you'll be getting this every month for the next 20 years or so? (It'll last about a week and they make products for it.) Congratulations on finally becoming a Woman! I'm so proud!!

Cousin Lilly :)

Anonymous said...

Hey,Joe,

The Saturday day spa things are fantastic. But don't forget to bring your PCP along. Leave the oncologist home. They only give you bad news. As far as the whiz thing, let the women worry about it! Your beloved cousin Dr. Lilly already take care of that! You should be thankful.

Anonymous said...

KAREN AND JOE
GREETINGS FROM INDIANA
( I AM PRAYING FOR A COMPLETE RECOVERY )
GOD BLESS BOTH OF YOU
YOU HAVE A GREAT SPIRIT !
P Miller

Anonymous said...

Whoever thought someone could find humor in bone marrow transplant? Possibly as we are walking the walk now, I find it hilarious! You seriously are staying more than positive. Is it the steriods? Livi is overboard, for which we are truly grateful...imagine a 23 month old on massive steroids. She is getting a dimpled butt. As we pray for Livi, we will continue to pray for you too. Much love, GLA

Anonymous said...

Dear Joe, Usually it is my darling wife responding,GLA, but I also am a regular reader and prayer.Sitting on the 7th floor of Hershey medical center with my daughter Emily and precious sleeping Alivia ,I felt I couldnt let this entry get by me.I started to pray for you during the analogy portion of your entree. Brad and Anjolina???? I could appreciate some of the fantasy but you lost me there.In fact it was at this point I had to go and relieve myself. Pavirotti?? Oh well ,diversity is a good thing. I would prefer Jethro Tull. Seriously though,we are praying for you and Karen every day and praying for a full,speedy, God glorifying recovery.You serve a loving God who will never leave you or forsake you. Livi's " Pa" Dave allen