Live for the moment - For Kim

I will start today with a health update. Had my first MRI since starting the Avastin treatment. Dr. Robins was pleased with what he saw. The Avastin is doing what it is supposed to. YEAH! So I continue with biweekly treatments and MRIs every 8 weeks. I am feeling good and glad to get some good news.

The real purpose of this post is to discuss a show that I just watched on CBS that triggered a "switch" in my mind. The show was "Live for the moment" and hosted by the Survivor host Jeff Probst. The show was a week in the life of someone who has ALS or Lou Gehrig's disease. He was given the opportunity to do some amazing things that he always wanted to do. It was an obvious Made for TV program, but it moved me none the less.

I have done a good job burying reality deep in my mind. I put on my game face and pretend that I don't have Brain Cancer. I go around living my life oblivious to my surroundings and often taking for granted how much my wife Kim does for me every day. Let me try and put this into words. My last surgery was a tumor resection. during the surgery, I had what my Neurosurgeon described as a "Bleed" which basically means that it was unexpected bleeding that they had to deal with on the fly. Now there are two types of strokes...those caused by a blockage and those caused by a bleed. In other words, I had a minor stroke in the operating room.

The idea that I had a stroke at 40 was hard for me to grasp. I had obvious left side deficits and am told I still have a little droop on my left side when I am tired. After several weeks of speech, physical, and occupational therapy, I have recovered remarkably well and am doing great, but I am realizing that I still have some deficits. The deficits are mainly short term memory issues. Now I have been aware of these issues and have learned some great techniques like - Write shit down Dumbass! :) However, this is where I tend to take things for granted.

Let me start with Kim is everything to me. I not only love her, but I am in love with her. Kim has a very demanding job both during the day and in the evenings. That is who we are...work-a-holics. We love what we do and it helps to define who we are.

That is the simple part. The hard part is that I often unknowingly take advantage of her. If I sit back and am honest with myself, I rely on Kim for damn near everything...from keeping me current on my medications, to cooking and all in all being Lead CareGiver for me. This with a 60hr/wk job and a gimpy husband who doesn't use his head and help around the house and use the tools he learned to overcome some of his deficits..i.e: Write shit down dumbass!

So with Valentine's Day coming up I want to take a minute to acknowledge what my wife does for me. I couldn't do it without her! If you have seen strength in me over the last two years with how I am handling my life with Brain Cancer, I assure you it is really her keeping me standing.

Kim- You are my everything and I don't know what I would do without you. Thank you for everything that you do every day. It is all appreciated more than you will ever know. Thank You and I Love You!

To all of you....don't take anything for granted! Live for the Moment!

Peace Out!

Another Year Older - YAHOO!!!

One year ago I was posting how excited I was to turn 40 years old. Well, one year later, another Brain Tumor removed, several weeks of rehab to recover from a minor stroke, 2 years post original diagnosis, and here I am - 41 and loving every minute of it!

Typically all of the survival stats for people with Glioblastoma's are pretty dismal, except for this one that I found not too long ago...for patients with GBM's who suvive 2 years post original diagnosis and treatment, the 5 year survival statistics go through the roof! How's that for a birthday present?

So, today is going to be low key. Going to spend the day doing some work and hopefully get to the gym. We already celebrated my Bday as Chef Kim treated me to a great Steak dinner this weekend for my birthday and I spent Saturday evening with some great friends and donated money to each of their Poker Funds.

Thank you all for the continued prayers and thoughts.

Peace Out!

New Year, New Hopes

2010 is upon us. My thoughts today are of hope and joy AND the future. 2 days ago, I celebrated 2years of survival post original diagnosis and surgery of Glioblastoma Multiforme. I have survived 2 surgeries and have begun treatment post 2nd surgery. Treatment is going well. We will get an idea how successful it is in Late January at my next MRI.

So what is in the picture for me in 2010? As Jimmy Buffett put it best in 2008, it's "THE YEAR OF STILL HERE!" I am feeling great and I am anxious to get back to work! I am sick and tired of thinking about Cancer! I am looking forward to a year free of hospital stays!

2009 What a year! The year began with a bang in business, with Jeff and I commuting back and forth to Minneapolis for a big project. From there, we decided to add another consulting practice to our company. It got to be a little challenging as we ended the year, from my tumor recurrence, surgery and recovery, to my brother's Prostate Cancer surgery and reovery.

It was a crazy end to the year, but oh do I have alot to be thankful for.

1. I am still here and feeling great! The fight continues.
2. My brother Kevin is doing fantastic and all the tests have been clear!God Bless!
3. Business is looking up significantly after a slow end of 2009.

As I look into 2010 I am excited for what tomorrow brings. No matter what comes, I know that with the support of my amazing family and friends I will get through it, but most importantly I will continue to live life!

I wish you all a very Happy and Prosperous 2010. Make it a great year!

Peace & Love

Steve

PEACE OUT for 2009!

Released from Rehab

Its beginning to feel a lot like Christmas! Yesterday I was completely discharged from Outpatient rehab. I was slated to have to do 8 weeks, but did so well, (and I whined a lot) that they officially discharged me from therapy yesterday. I had been going 2 times per week to Physical Therapy, Occupational Therapy, and Speech Therapy.

I need to thank my team at Van Matre Rehab hospital in Rockford. They were honestly fantastic. From my Core team during my two weeks of inpatient therapy; Fran who helped me get out of bed and relearn balance in Occupational Therapy to Donna who kept me laughing in Physical Therapy to Emily who helped me think straight again. Thank you. Without them, I would still be the blubbering mess I was after surgery. I also want to thank my outpatient team for challenging me and helping me reach the recovery goals! Thanks go out to Marla, whose weekly homework kept my brain firing neurons, Becky in PT for making PT fun, to everyone else I worked with Bev, Aaron, etc. You are all fantastic!

Now I am able to focus on the joy of the Christmas season. I am excited to spend tomorrow and Friday with family!

Merry Christmas and Happy New Year to all of you. Thank you from the bottom of my heart for all of your support and prayers over the last 2 years.

YEP THAT'S RIGHT FOLKS. Sunday, I reach my own mini holiday miracle 2 years post diagnosis of Glioblastoma Multiforme! Still alive and kicking!! I must have been a good boy this year! Santa gave me everything I wanted...My health and a wife, Kim, who has been there through everything, done everything for me and been more supportive than I deserve. It is truly a Merry and Blessed Christmas!

Peace to you and your families this holiday season!

Treatment SUCCESS!

Ok, so Wednesday we headed back up to the Great White North aka UW Madison. Got blood checked as usual and met with Dr. Robins. The new treatment is Avastin. It is not a "Chemo" Cancer fighting but a Cancer fighting drug that goes after the tumors ability to grow blood vessels. Without blood vessels to feed the Cancer, it Dies. Avastin has been around for awhile and has been proven to extend GBM patients life longer than Avastin with a Chemo agent together. Kim and I are happy with the choice of treatment. The first treatment was an infusion via IV over 90 minutes. It is now Sunday and I have had absolutely NO bad side effects! YAH! My schedule is set. I have to go up to Madison ever other Wednesday for an infusion, but in the future the infusion will only take 60 minutes or less. In addition, I will have MRIs every 8 weeks.

Now, for the good stuff. Kim and I are officially on our annual vacation with our good friends. Kim and I and the Schindlers and Drectrahs landed in SAN JUAN yesterday bound for Royal Carribbean "Adventure of the Seas" for 7 days of relaxation and LAUGHTER! Left Chicago 23 degrees and landed to 90 degrees. Life is Good!

PEACE

I'm Baaaaack!

I hope everyone had a fantastic Thanksgiving day and ate entirely too much like I did. I also hope that you were able to share thanks for all of the good things in our lives. As you saw with my last post, I had even more than normal to be thankful for this year. The unbelievable emergency response team from UW who literally saved my life on Wednesday was obviously on the top of my list. :) Those nurses and doctors were amazing and they definitely showed up in force. How do you thank people who literally saved your life? Thanks doesn't really seem to be enough! But THANK YOU! :) Now it may seem like I am lingering on this issue/event but it has had a profound impact on me. I have had 2 Crainiotomies and have not been that scared nor that close to death in my life. To say it scared the s....t out of me would be an understatement of the century. It has reignited more than ever the fire in me to BEAT THIS DAMN DISEASE!

So, I am eating like a horse and gaining back the weight that I lost in the hospital. I feel fantastic and am recovering from the post surgery impairments quickly!

We have a new plan as Kim wrote in the last post. We go up on Wednesday to see Dr. Ian. The plan is to begin a different course of treatment, Avastin. I will learn more about it on Wednesday, but it is an established treatment for GBM Recurrences. To say that I am not scared of receiving a new drug after my last reaction would be a lie, but with the help of my AWESOME WIFE, I have decided to "MAN UP" and go get this damn disease.I hope you all have a fabulous rest of this holiday weekend. As always, I welcome your thoughts and embrace your prayers as I KNOW they are working.

Peace Out!

Steve

Treatment begins....kinda

How did treatment go you ask, oh if only you knew? Its Kim writing on Steve's behalf, he is okay just tired.
So we got up early this morning and headed up North, thankfully the car knows the way so she just heads the right direction. Things started out smoothly, had a quick quality of life questionnaire, did some final prep tests etc. I think Steve is tired of the ECG process and the stick on things.
The plan was to get the CP322, 100 mL over one hour via IV infusion. Sounds easy enough. Start time was 11:01...End time was 11:03. Not quite an hour. Just after starting the infusion Steve coughed a bit and said he wasn't feeling so good, the fabulous nurse, Tamara, and I just thought he was going to hurl no big deal. She shut off the IV pretty close to immediately, thank God. Steve got quite red and warm, one thing led to another and his blood pressure dropped. The worst set of numbers I heard was 54/31, it was hard to keep up as they called a "medical response team" and there were pretty close to 2 dozen really good medical people tending to Steve, and in true Steve fashion, in the midst of all of it, he looks up and asks "do you think we could get a few more people in here?"

After a couple giant bags of saline were speedily put in via IV and a total of 4 (2 were put in for the treatment, 2 additional ones were put in in case of need) IV ports put in him, things improved. Original plan was he was going to stay in the hospital overnight as they wanted to monitor him. They ran another ECG to see if it showed anything and everyone went off to discuss labs, tests, the new plan etc.

Well, a chest x-ray and CT scan came back normal (some good news), and Ian found out that this particular medication has had this reaction in other trial members. It was decided that Steve didn't need to stay overnight in the hospital so he came back to the hotel w/ me. Yeah.

So what's next? We will not be trying this medication again, not worth the risk. We are going to go with a medication Steve had read about a while back, Avastin. This will start on Wednesday next week. We are hopeful things will go well. This is a drug that has been used previously so it has a track record and they kind of know what to expect from it.

At this point, we don't know really how to feel. It is crazy scary to start this next treatment as it is similar in nature to the one we started/tried to start today. But it is crazy scary to put off treatment. But, today’s team of medical professionals reacted beautifully to the crisis and that makes me feel better. At least if something goes funky I know they know what to do.

All in all, believe it or not, things aren't that bad. We definitely have reason to be thankful this Thanksgiving!! We are super grateful to the doctors and nurses in Madison and those we have in Rockford. As well, neither of us knows how we would get through all of this without the love and support of all of you. Thank you so very much for all of the good thoughts and prayers you have sent this way, they really did their thing today.

This Thanksgiving, know that we give double thanks for all of you and wish you all time to enjoy your families and relax!!