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!
Thursday, December 31, 2009
Wednesday, December 23, 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!
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!
Thursday, December 3, 2009
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
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
Friday, November 27, 2009
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
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
Tuesday, November 24, 2009
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!!
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!!
Wednesday, November 11, 2009
treatment planned
Ok, so I apologize for taking so long to post, but recovery from surgery has been a little more difficult than planned. After leaving the hospital, I spent two weeks at Van Matre Rehabilitation Hospital for Physical and Occupational Therapy. They kept me hopping with 3 hours of therapy per day. It was tough, but I made it through and was released last Friday to come home! Yeah.
So yesterday we went up to visit dem smart doctors in Madison. After another MRI, by the way, I only need one more to fill up my punch card :,) had a nice lunch with Kim and then we met with Dr. Robbins, the Neuro-oncologist. Had a great talk with him and decided on a plan of attack for treatment.
Because of the type and aggressiveness of the tumor (Glioblastoma Multiforme), we chose an aggressive course of treatment. What we chose was to join another clinical trial for "Veg F Inhibitors" - a type of Chemotherapy . I will be getting IV Infusion treatment once a week in Madison. The treatment will take 4-6 hours for the first "cycle" each "cycle" is four weeks. This will continue for as long as it is working, up to 12 months and they will monitor it constantly. We are hoping to start this within the next two weeks.
Although this is not our ideal choice, it fits with our motto "It is what it is' and that we will continue to fight this disease with everything I have! So even though I am scared of the new treatment, I truly believe in my doctors and KNOW we have made the best decision possible.
On a side, yet fun note, being in the clinical trial will save my insurance company more than a Million $. Do you think I will get a thank you card from them? Me either. I will update the blog more often once the treatments start.
Thank you fo your thoughts and prayers and as always...
PEACE OUT!!
So yesterday we went up to visit dem smart doctors in Madison. After another MRI, by the way, I only need one more to fill up my punch card :,) had a nice lunch with Kim and then we met with Dr. Robbins, the Neuro-oncologist. Had a great talk with him and decided on a plan of attack for treatment.
Because of the type and aggressiveness of the tumor (Glioblastoma Multiforme), we chose an aggressive course of treatment. What we chose was to join another clinical trial for "Veg F Inhibitors" - a type of Chemotherapy . I will be getting IV Infusion treatment once a week in Madison. The treatment will take 4-6 hours for the first "cycle" each "cycle" is four weeks. This will continue for as long as it is working, up to 12 months and they will monitor it constantly. We are hoping to start this within the next two weeks.
Although this is not our ideal choice, it fits with our motto "It is what it is' and that we will continue to fight this disease with everything I have! So even though I am scared of the new treatment, I truly believe in my doctors and KNOW we have made the best decision possible.
On a side, yet fun note, being in the clinical trial will save my insurance company more than a Million $. Do you think I will get a thank you card from them? Me either. I will update the blog more often once the treatments start.
Thank you fo your thoughts and prayers and as always...
PEACE OUT!!
Tuesday, November 3, 2009
Boyz from Texas!!!
What a great surprise!!! Steve got a visit from the Texas boyz tonight, they have a meeting coming up in Chicago and made the drive from O'Hare to the rehab joint to visit. What a great treat!! I finally got to meet the two guys that I have heard so much about but best of all, their arrival brought about one of the famous Steve smiles. I'm sure you have seen one or two of them.
Other than Steve apparently spending the majority of the day trying to negotiate his release things have been going well. He has been working on Sudoku puzzles the past couple days. I have been somewhat hooked on them for the past several months and Steve tried a couple prior to the surgery, it is a really good brain workout. He brought a couple puzzle books with him and he and the speech therapist have been doing them. I blame my friend Jo for getting me hooked on them but if it helps Steve with his "executive function" that's great. He is still a bit focused on that. I do believe it is getting better each day.
We didn't see Dr. Crute on Monday, apparently she is in Honduras. But we did get to see the next best thing, her nurse practitioner, Michelle. We love her too so it was all good. She was pleased with Steve's progress so far. If the neurosurgery people are pleased, we are pleased.
We touched base with the crew in Madison and will be going there Tuesday next week for an MRI and then to see Ian. Keep you posted on the outcome of that. They aren't sure what the next step will be in terms of treatment but will have a better idea once they see Steve.
Steve's doc at rehab said maybe home on Friday, no promises. They have the weekly meeting tomorrow at which time they will discuss his progress and potential discharge date, will know more about that tomorrow.
Following discharge, there will be outpatient therapy, OT/PT and speech. Plus whatever they decide in Madison.
I think that is about everything. It is only Tuesday but a lot has happened this week already. It is somewhat of a whirlwind. Hoping once Steve is home it gets a bit more "normal" guess we wait and see.
As always, thanks for your continued thoughts, prayers and support.
A special heartfelt thanks to Scott and Derrick, your visit meant a lot!! It was also nice to put faces to the names. :)
Peace and Love,
Kim & Steve
Other than Steve apparently spending the majority of the day trying to negotiate his release things have been going well. He has been working on Sudoku puzzles the past couple days. I have been somewhat hooked on them for the past several months and Steve tried a couple prior to the surgery, it is a really good brain workout. He brought a couple puzzle books with him and he and the speech therapist have been doing them. I blame my friend Jo for getting me hooked on them but if it helps Steve with his "executive function" that's great. He is still a bit focused on that. I do believe it is getting better each day.
We didn't see Dr. Crute on Monday, apparently she is in Honduras. But we did get to see the next best thing, her nurse practitioner, Michelle. We love her too so it was all good. She was pleased with Steve's progress so far. If the neurosurgery people are pleased, we are pleased.
We touched base with the crew in Madison and will be going there Tuesday next week for an MRI and then to see Ian. Keep you posted on the outcome of that. They aren't sure what the next step will be in terms of treatment but will have a better idea once they see Steve.
Steve's doc at rehab said maybe home on Friday, no promises. They have the weekly meeting tomorrow at which time they will discuss his progress and potential discharge date, will know more about that tomorrow.
Following discharge, there will be outpatient therapy, OT/PT and speech. Plus whatever they decide in Madison.
I think that is about everything. It is only Tuesday but a lot has happened this week already. It is somewhat of a whirlwind. Hoping once Steve is home it gets a bit more "normal" guess we wait and see.
As always, thanks for your continued thoughts, prayers and support.
A special heartfelt thanks to Scott and Derrick, your visit meant a lot!! It was also nice to put faces to the names. :)
Peace and Love,
Kim & Steve
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