Thursday, December 9, 2010

On Time Start

Here we go...

Lots to update you on the past few days and by the title above, I am on schedule and just got hooked up to my first dose of chemo...  important update, the TV guy just visited and was able to work his magic and get the Playstation 3 hooked up, more later...  This chemo treatment will be very different from the initial induction chemo that I received back in September.  The September treatment was administered 24/7 for a week while this one will consist of 2 drugs (Fluderavine and Busolphine sp?) that only take 4 hours per day.  But, the other side of it is that these 2 are more potent than the initial treatment.  I'll be on them for 5 days, take a 1 day break and go directly to transplant.

Earlier in the week we had a couple of procedures; a CT scan to look at my lungs and organs again from the Pneumonia and on Tuesday, I had the surgery to put in the catheter that will be used to put the drugs in me or take blood out of me.  Previously, I had a "PIC" line in my arm which served the same function, however, that was removed and I have upgraded to the catheter with 3 lines.  This one is running out of my upper let chest area.  Putting this one in required surgery.  While overall tolerable to a degree (except when sleeping), my left shoulder area is very sore since the surgery and I'm told it will clear up in another day or so.  I am taking some pain medication when the area throbs or becomes pretty agitated.

All of this led to Wednesday and check in at Karmanos.  No reason to get there too early and a bed wasn't available until the afternoon regardless...  we arrived about 3:00 to the palatial estate that is otherwise known as room 11 on the 10th floor.  This floor is dedicated to bone marrow transplant recipients and and they have an area for bone marrow donors.  Because everyone on the floor effectively has very little, if any, immune system throughout the process, this floor has its own air filtration system to minimize the air born bacteria that could affect the patients.  An additional benefit of the system is that the patients don't have to wear masks when walking outside their rooms.  It may seem minimal, but it is some type of small freedom we get on the floor.

Because everyone on the floor is in for a longer stay than most patients, the nurses are assigned more specifically to patients.  While they all work the nursing schedule, whether it be 8 or 12 hour shifts, I will essentially have the the same nurses throughout my stay, at least that's the idea that my primary nurse outlined.

The food service here is a little different than the service at the previous hospitals.  They have a small menu of items to choose from for the snack menu, but they also offer 3 meals a day that are an either/or type of choice.  I didn't know they would be delivering food this morning and when the service came at 7:00 am, I probably wasn't the most friendly patient.  They don't exactly help things by waking you up at 3:00 and 4:30 am to take vital signs and draw blood.  I was pretty happy when one of my choices for dinner was Salisbury steak, seriously.  It reminds me of the TV dinners we used to eat as kids when the parents were going out...  will give a full report if it lives up to expectations or not.  Here is the best part of the whole meal thing...  you get served dinner between 4:30 and 6:00.  I can't help but think of Del Boca Vista.  Maybe I'll run for 10th Floor Mayor while I'm here.

Now that the Playstation 3 is hooked up, I have made a commitment to watching less TV...  kidding.  Actually, I need to improve my hand/eye coordination so that when I get to play golf again, I still have some sense of the game.  What better way than video games?  One of the nurses on the floor told me I should be playing Call of Duty (and I might), but I feel obligated to get the Bengals out of the 2-8 hole I put them in on the Madden football season I started a week ago.  10-15 years ago, these games would be a piece of cake to play and progressively dominate, but now...  I'm a chump to the kids, someone they can string along in the games and win at any point.  I haven't played Michael or Jimmy lately but I know the result before we even start.  I tried to get them into the Tiger Woods golf, but it didn't stick (probably too little action).

I think I mentioned that my new doctor was Dr. Uberti.  As it turns out, Uberti is one of the Co-Directors (co-doctors) on the floor and each of them makes rounds for 2 weeks at a time.  Currently, the other doctor is making the rounds and his name is Dr. Ratanatharathorn.  Thank heaven he goes by his first name.  (Just thinking that his family should have taken a cue from many of the Europeans who moved to the US and shortened their name to make it easier...  Dr. Ratan sounds nice).  We met him last night and he was pretty darn cool and knew all about my case.  He answered all of Mom's questions (critical for anyone to gain her confidence) and came back this morning to check in on me before the chemo started.  Between he and Uberti, I'm very confident in the team they have together for treatment.

Thanks for asking...  here's an update on my health.  Obviously we know I am here to get a transplant, and that has not changed.  Some positive news is that the latest bone marrow biopsy revealed that my Leukemia had not increased at all in the last month, essentially meaning that I have found a state of remission.  However, my condition is still such that I need the transplant as I have what is called Myelodysplasia.  Essentially this is very good indicator of bad cells and lets us know that even if I am considered in remission, the Leukemia is coming back unless they do the chemo and transplant.  The doctors have said that this is a better situation than having my Leukemia counts much higher, even though it doesn't change the treatment.  They like the fact that the counts are low and believe that the chemo will kill off the remainder of the bad cells before treatment.

Many people have asked about the donor process (as have we) and what we know is that it is a male and the blood stem cells are not here yet.  They try to bring the transplant in the same day, depending on where the donor is located.  Currently, my blood type is B positive, when we get through with the transplant, my blood type will be that of the donors', AB negative.  It makes sense given his cells will be the ones growing, but I would never have guessed that one of the qualifications for transplant wouldn't be blood type, but it actually has no bearing on the "match."


Enough for now... the treatment has started and in a way, I have no idea what to expect (even though I've gone through chemo before).  It seems like a long time ago since the diagnosis, and as always, we appreciate all of the support from everyone.  My hope is to be home by the New Year (it is possible) and watching the bowl games on the big screen (yes, the TV is pretty bad here).  And those of you wondering, the bowl pool will be out this weekend, so start studying the games.

15 comments:

AD said...

Hey Shoop, great update. I can't help but be excited...relieved and scared for you all at the same time. It sounds like things are moving in the right direction and there is a light at the end of it all! Let us know about any possible visitors to help pass the time. Hugs and kisses to you and Lynn. AD

Jason Weiner said...

Awesome update, Steve. I am glad things are progressing as they should. Trust me, according to plan is good. Welcome to the wonderful world of chest port. I still have mine. The thing sticks out like a damn electrical outlet. This Summer at the pool some kid asked me if I had a battery in my chest. I told him to go grab his blender because I was mixing up drinks via my outlet. Good news on the no mask. Those things always made me sweat and drool (more than usual anyway). Stay strong and keep that humor going. I hope that Salisbury Steak was rock solid.

Best wishes from Cincinnati!

Jason Weiner

P.S. If you are allowed to bring in frozen food, avoid the Banquet Fried Chicken. I too thought this would be reliving my childhood TV dinners, but those things are disgusting.

Anonymous said...

Hi Shoop,
Loved the update. I too remember the Banquet meals on bowling Saturdays. I am amazed about the blood cells. Along with your updates, you kind of educate many of us. You have to be the only male I know not playing the OPs video game. My sis in Cinci had to buy three, one for each of her boys. All living in different apts. and dorms she was doomed. Between all of them playing she says it will be weeks yet before they come out for air. Take care, and Roger is looking forward to that pool. Hugs and Kisses. Pen

Anonymous said...

Nothing to say but that i am thinking of you often, checking the site for updates and praying for you. Hang in there shoop. bets

Jo G said...

Hi Steve, good update! I was wondering how things were going and if on schedule so I am glad to hear they are.

The dinner schedule made me laugh because this week Blackie and Ann went out at 4:30pm with their friends... it appears that the 'early bird phenomenon' starts with the enticement of discounted cocktails ;). And, regarding the video games...I think there should be a different term for PS3, Xbox, etc compared to what we were reared on (Atari, Coleco). I recall being a pretty good Missle Command and Asteroids player, but when I sit down to play some shooting PS3 game with my nephew Jack who is six, I think he just kills me in the game and continues to play on. 'Umm, Aunt Jo, sorry, you are dead.' There are so many buttons on the controller and things to consider...maybe I'll just watch. Give me a joystick and a fire button over that any day...

Thinking of you this week and praying for low side effects :).

Jo

Anonymous said...

I hope you are writing a book! Thanks for the information and update - praying for all the positive results and comfort for you!
Love,
Penny p.

Anonymous said...

Steve.......you're officially excused from the largest attendance ever to spectate tomorrow's hockey game at the Big House. Otherwise, I'm sure you'd be there!

Keep at it........love, Pops

wally said...

Shoop, even though I haven't made any comments, I have anxiously awaiting every update and been tracking your progress. Both to know things are going well, which is awesome, but also to read the posts. Fantastic journalism. I hope your treatments progress well over the next few weeks, and let me know if there is any chance if Jodi and I could see you when we come home at Xmas. We will be at my parents for Xmas Eve, and then from the 29th to the 1st. Keep hanging in there, and know you are in my thoughts and prayers. Olivia continues to have you on her prayer list in Kindergarten, even though she had to change your name to Mr Steve because every kid thought Mr Shoop was a funny name.

All the best,

Wally

Elizabeth said...

Hi from Chicago! Thanks for the detailed update. I remember Anyy and I getting those TV dinners when Sarah and David left us with a babysitter. You probably couldn't pay me to eat one now but they were awesome at the time. I'm hoping all goes well over the next week. I'm thinking of you and the family. I will be home for a few days at Christmas and hope to see you guys. Although I don't know if you'll be allowed that many visitors.

Keep the updates coming.

Elizabeth

Anonymous said...

Hi Shooper,

I am coordinating PS3 games research with Jack and his buddies...they are all true "gamers" as the lingo goes. I know you prefer the sports games, but as we discussed the other night, some of the "action games" are fun. Do you remember Armour Battle for Intellivision? Great game....and I am almost certain that I dominated you in that game...and if not that game, I don't recall you being very threatening as an opponent in any games. I am amazed at some how far some of this tech stuff has come. It must be a tad "fustrating" for you given the numerous buttons...

Blizzard heading my way, but I hope to get out tomorrow and secure you a game of my choice...please keep an open mind when it arrives, as I am keenly aware of your stubborn nature.

Sounds as if your docs are upbeat, and I know from my legendary cross country days at X that the eventual finish line always was always on my mind which keept me going no matter the hills in front of me, just as I know you are keeping your eyes on the finish-line with respect to your treament. (yes, I walked a lil bit during the races...but that's not the point.).

Talk to you soon. Cons

Brandon said...

Shoop,

Like most everyone here I am excited and nervous at the same time. I know Karmanos is excellent and it seems everything is lining up. I think if you get some space pens or tip calculators you will be a shoe in for mayor of floor 10 (phase 2).

Good luck with the PS3 to help the old coordination, although I can't help thinking this is leading to you asking for strokes next summer.
Then birding from a waste bunker for net eagle and becoming unbeatable.

Any hold em online? Once you finish kicking lukes ass, a welcome home game must be set.

Miss ya buddie and I look forward to getting a chance to visit soon,let me know when.

Give Lynn my best,
Brandon

Melissa said...

Thanks for the updates. I can hear your voice when I read them. Sounds like they have a game plan and hope you kick this disease's ass. You are a champion and I know you will fight this and win. Can't wait til you are bowling and messing with me again. Everyone at Holy Family church is praying for you and the Agosta's are especially remembering you in our prayers. At least you will be able to beat the boys at those darn video games when you get home. They won't know what hit them. Keep up the fight and sleep when you can. We are here for you and Lynn. Please don't hesitate to call. Love you.

J.M.Geeslin,M.D. said...

Steve---

You explain it better than some Grand Rounds I've attended. I bet you like having a central line much better than a PIC.

If you are getting tip calculators for the nurses in your quest for mayor of the 10th be sure and get Wizards not Wilards. Don't order them from Bob Sacamana's father.

Hope things are going so well and you are feeling up to a new post soon. AB hangs on every word.

B

vinnmann said...

Shooper every day before bed Alex and Brenda and I pray that everything will be fine and in my heart I believe that to be true. Your a strong man with a strong supporting cast in your wife and family.

We love you and look forward to you making a full recovery.


PS-I figure that this can only help your golf game:-) it certainly can't hurt it......You the man.

Shoop said...

I love the comments all... particularly when the Seinfeld references are snuffed out. Nice work Blaki.