Just dropping in to say a super thank you to all of the people who donated to either ABTA, MS or the memorial fund.
I sent $1400.00 to ABTA, $600.00 to MS and I believe I have found the memorial bench that I am going to get for my yard with monies donated in memory of Steve. The outpouring of love has been overwhelming. Words cannot express my gratitude.
It has been a rough couple weeks but as we have said for many months, it is what it is.
I want to share a little surprise happening with all of you, a true Talbott moment. For those of you who don't know, June 7, 2011 would have been Steve and my 14th wedding anniversary. (hold the tears, you aren't even close to the super touching part) The Sunday prior to the big day, I was planting the perennial garden that Steve's Aunt, Uncle & cousin gave me, I was in the back back of the yard. As I was walking up to the house to get more water, I saw someone in the house. Now,in all of the time Steve & I lived in our house, drop in visitors have been few & far between. At first I was like...Who is in my house, followed by a quick...where is my shovel?
Good news, it wasn't a burglar, it was Joanne, my mother-in-law. She stopped on the way back from little Michael's first birthday party. Well, Joanne was standing in the kitchen holding what was obviously a Crimson Ridge gift of some sort. Me being me, I was thinking, when did they start having party gifts at kids parties?
Anyway, as it turns out, the Tuesday before he died, Steve asked his mom to get me some Godiva for our anniversary. What can I say, once a princess, always a princess, that guy sure knew how to spoil me.
Well, after a nice cry and a little laughing I realized in true Steve fashion he was thinking of me even at the end, and I didn't even have a card for him. I cannot put to words how much I treasured my time with Steve. Don't get me wrong, we all have our isms and we both drove each other nuts at times but, even those isms will be missed greatly.
I was blessed to have 40+ months with Steve after the doctors but a 9-12 month window on that time. We did a lot of living in that time, and most importantly, we lived without regret.
My recommendation to you...LIVE. If you want dessert for dinner, do it. Pink shoes with a green top? Why not. Thinking, hmmm the wife/husband would like that (insert item here), buy it for them, they'll like it. Thinking a trip to the Caribbean sounds like a good idea? GO, take friends.
Bottom line...LIVE, don't put things off, don't second guess should I or shouldn't I. Steve and I lived the past 40+ months without regret. Yes, we did a lot and yes, we laughed even more. I will treasure each and every moment, even those when he was driving me nuts. :)
Again, thanks to all of you who donated to our two charities of choice and to the memorial fund. Your generosity is overwhelming but greatly appreciated.
Until the next post...Peace Out,
Kim
Monday, June 13, 2011
Saturday, May 28, 2011
Best Worst Days
I guess to say the past few days have been the best worst days I have ever had is a good way to sum it up.
On Thursday, May 19, 2011 at 11:05 a.m. I lost my very best friend and a very large piece of my heart. Steve passed, quietly, peacefully and surrounded by family. I treasure the precious opportunity I had to be there with him when he passed.
I say these past few days were the best worst days, the worst part, that is quite obvious. How can I possibly call them the best in any way shape or form? Well, people have reached out from so many places. Steve's family and I have heard from people from his old neighborhood when he was growing up to high school friends, previous employees, previous co-workers of mine that I haven't heard from in years, as well as previous students who remain close and many many more friends, family and loved ones.
I wanted to provide the opportunity to pay respects as well as celebrate the impact Steve had on so many people. I believe we did that. My nephew, the infamous Tony, said that though he heard/saw tears, there was by far more laughter as people recalled times with Steve or how he had inspired them. I have always been proud of Steve and all that he accomplished and he gave me one more opportunity to be the very proud wife of an amazing man.
It is my intent to keep the blog up and post intermittently, no promises on the frequency but some life happenings are worthy of this particular blog. One such life happening...On Wednesday, May 25, 2011. Miss Ava became a big sister, Ella Marie arrived to put a bit of brightness in our lives. It is my mission to make sure both of the girls as well as Steve and I's slew of nieces, nephews,and great nieces & nephews are sufficiently spoiled and that they remember "uncle teeb".
To all of you who sent love, prayers and support over the years, please know how much it meant to both Steve and I and know that he beat the odds because of the strength he got from all of you. I will forever hold all of you in my heart and be eternally grateful for the support you gave to Steve. Only one thing left to say...Peace Out ;)
Kim
On Thursday, May 19, 2011 at 11:05 a.m. I lost my very best friend and a very large piece of my heart. Steve passed, quietly, peacefully and surrounded by family. I treasure the precious opportunity I had to be there with him when he passed.
I say these past few days were the best worst days, the worst part, that is quite obvious. How can I possibly call them the best in any way shape or form? Well, people have reached out from so many places. Steve's family and I have heard from people from his old neighborhood when he was growing up to high school friends, previous employees, previous co-workers of mine that I haven't heard from in years, as well as previous students who remain close and many many more friends, family and loved ones.
I wanted to provide the opportunity to pay respects as well as celebrate the impact Steve had on so many people. I believe we did that. My nephew, the infamous Tony, said that though he heard/saw tears, there was by far more laughter as people recalled times with Steve or how he had inspired them. I have always been proud of Steve and all that he accomplished and he gave me one more opportunity to be the very proud wife of an amazing man.
It is my intent to keep the blog up and post intermittently, no promises on the frequency but some life happenings are worthy of this particular blog. One such life happening...On Wednesday, May 25, 2011. Miss Ava became a big sister, Ella Marie arrived to put a bit of brightness in our lives. It is my mission to make sure both of the girls as well as Steve and I's slew of nieces, nephews,and great nieces & nephews are sufficiently spoiled and that they remember "uncle teeb".
To all of you who sent love, prayers and support over the years, please know how much it meant to both Steve and I and know that he beat the odds because of the strength he got from all of you. I will forever hold all of you in my heart and be eternally grateful for the support you gave to Steve. Only one thing left to say...Peace Out ;)
Kim
Wednesday, May 18, 2011
A bit of a hiccup...
Someone said to me today, just when you adjust to the latest thing, another one creeps up. So is the case. As the title says, we hit a bit of a hiccup today. I got a call this morning at work that Steve was having some trouble breathing (an O2 level of 87, not what you want) and his heart was racing (add heart rate of 130 to the O2 level...ugh).
He was taken to OSF for another ER trip, for those keeping track, it was 3 weeks ago today that we were there for the fall. Tests were run etc. determination...several large blood clots in both lungs, one near his heart which led to the increased heart rate.
The plan to address the clots is to use injectable blood thinners with oral blood thinners. The goal is to stop the growth of the clots and they will eventually be reabsorbed in the body. The injections are only during the time it takes to get the clots under control with the oral meds to handled maintenance.
As of right now Steve is in NICU, that will be for "several days", I don't know what the medical definition of "several" is I guess we will find out. After that he will go to a "monitoring" floor. Then I am assuming back to the skilled care facility.
I will keep you as up to date as I am able to, as you may have noticed, I am not as on top of keeping the blog up to date as I probably should be, yet another reason why I don't "Face Book" like the cool kids.
As always, thanks in advance for all of the thoughts, prayers and just flat out love and support you keep sending our way. It is appreciated more than you know.
Peace Out,
Kim & Steve
He was taken to OSF for another ER trip, for those keeping track, it was 3 weeks ago today that we were there for the fall. Tests were run etc. determination...several large blood clots in both lungs, one near his heart which led to the increased heart rate.
The plan to address the clots is to use injectable blood thinners with oral blood thinners. The goal is to stop the growth of the clots and they will eventually be reabsorbed in the body. The injections are only during the time it takes to get the clots under control with the oral meds to handled maintenance.
As of right now Steve is in NICU, that will be for "several days", I don't know what the medical definition of "several" is I guess we will find out. After that he will go to a "monitoring" floor. Then I am assuming back to the skilled care facility.
I will keep you as up to date as I am able to, as you may have noticed, I am not as on top of keeping the blog up to date as I probably should be, yet another reason why I don't "Face Book" like the cool kids.
As always, thanks in advance for all of the thoughts, prayers and just flat out love and support you keep sending our way. It is appreciated more than you know.
Peace Out,
Kim & Steve
Saturday, April 30, 2011
Return of the blog
It has been quite some time since the blog has been updated, apologies for that but Steve has gotten into FaceBook and has taken that on as his form of communication with many people. I however don't FaceBook so I won't be maintaining that for him.
I don't know where things were left off but I am just going to play quick catch up with the past six months.
First off, you may have caught on by this point...this is Kim, not Steve.
In the past six months the tumor has returned twice. Both times we went after them with what Dr. Howard calls retreatment radiation. It is essentially the same amount of radiation that Steve got during the initial radiation treatments in 2008 but it is given over a longer period of time. The tumors are in the same location but they shift just a little each time they return, they go just outside of the area that was radiated previously. Sneaky little buggers.
The retreatment radiations do quite a number on Steve, they cause serious fatigue and whereas both had significant impact on the left side weakness Steve has from the stroke in 2009, this last round really was hard.
We have had a phenomenal caregiver during the week while I am at work (Thanks Tony, you are truly special to us both and we will never be able to repay you, we love you very much)as being alone has not been an option.
Falls have been a concern for some time now and we have been pretty lucky that Steve has not hurt himself with some of the spills he has taken.
Last Wednesday, we had a bit of bad luck, only a bit, don't panic. Steve lost his footing getting into the transport chair we utilized at home for getting around when he is super tired. He took a spill and couldn't be caught, he hit his head on the coffee table on the way down. No blood, no loss of consciousness no concussion. Did get a trip to the ER though.
Prior to the spill, I had been looking into extended care facilities to help get some strength built back up. This fall made the process go a bit faster than anticipated. After the fall, Steve was not able to get his right leg to cooperate with him and do what he wanted it to do, this coupled with the left side weakness, made coming home impossible. We were already struggling to keep him safe and cared for with one person.
As you know, Steve is "a big guy" this is per Dr. Howard so I can say it. Some of the meds increase his appetite quite a bit and Dr. Howard has been telling Steve he doesn't like to see skinny cancer patients so, that coupled with my cooking hobby, lets just say, Dr. Howard is right.
Long story short, Steve was admitted to a skilled nursing facility this afternoon. They will be working on rehab to increase his strength. I don't know how long he will be there or what the next step is. I will do my very best to update the blog at least weekly.
We don't go back to Madison until June for an MRI to see if the radiation was effective or not. Also, at that time, the MRI may or may not be accurate due to the amount of radiation we have thrown at Steve's brain. At this time, we are just taking what we have knowing full well the tumor will come back again at some point. Thanks in advance for all of the prayers and support that all of you continue to send our way. Words cannot describe how much you all mean to us.
As you know, only one way to close this out...
Peace out!
I don't know where things were left off but I am just going to play quick catch up with the past six months.
First off, you may have caught on by this point...this is Kim, not Steve.
In the past six months the tumor has returned twice. Both times we went after them with what Dr. Howard calls retreatment radiation. It is essentially the same amount of radiation that Steve got during the initial radiation treatments in 2008 but it is given over a longer period of time. The tumors are in the same location but they shift just a little each time they return, they go just outside of the area that was radiated previously. Sneaky little buggers.
The retreatment radiations do quite a number on Steve, they cause serious fatigue and whereas both had significant impact on the left side weakness Steve has from the stroke in 2009, this last round really was hard.
We have had a phenomenal caregiver during the week while I am at work (Thanks Tony, you are truly special to us both and we will never be able to repay you, we love you very much)as being alone has not been an option.
Falls have been a concern for some time now and we have been pretty lucky that Steve has not hurt himself with some of the spills he has taken.
Last Wednesday, we had a bit of bad luck, only a bit, don't panic. Steve lost his footing getting into the transport chair we utilized at home for getting around when he is super tired. He took a spill and couldn't be caught, he hit his head on the coffee table on the way down. No blood, no loss of consciousness no concussion. Did get a trip to the ER though.
Prior to the spill, I had been looking into extended care facilities to help get some strength built back up. This fall made the process go a bit faster than anticipated. After the fall, Steve was not able to get his right leg to cooperate with him and do what he wanted it to do, this coupled with the left side weakness, made coming home impossible. We were already struggling to keep him safe and cared for with one person.
As you know, Steve is "a big guy" this is per Dr. Howard so I can say it. Some of the meds increase his appetite quite a bit and Dr. Howard has been telling Steve he doesn't like to see skinny cancer patients so, that coupled with my cooking hobby, lets just say, Dr. Howard is right.
Long story short, Steve was admitted to a skilled nursing facility this afternoon. They will be working on rehab to increase his strength. I don't know how long he will be there or what the next step is. I will do my very best to update the blog at least weekly.
We don't go back to Madison until June for an MRI to see if the radiation was effective or not. Also, at that time, the MRI may or may not be accurate due to the amount of radiation we have thrown at Steve's brain. At this time, we are just taking what we have knowing full well the tumor will come back again at some point. Thanks in advance for all of the prayers and support that all of you continue to send our way. Words cannot describe how much you all mean to us.
As you know, only one way to close this out...
Peace out!
Sunday, October 10, 2010
I’m Back!
10/9/2010
Sor ry for the long delay in my posts. 2010 has been a bit crazy. What I thought I would do today is have a catchup day. For you new followers I will give the readers digest/speed racer condensed version of my Cancer Journey. If you want the full story, please read my past posts from the beginning, which I encourage. Here is the quick chronological story:
12/27/2007 – You have an inner ear infection…ooops I mean Brain Tumor
1/29/2007 – Dr. Crute removes Tennis ball from my right temporal lobe in a quick 12 hour surgery. Friends and familysit in uncomfortable chairs in the waiting room and Lyle saves the day with Jimmy Johns. When pathology comes back we find out that I have a Glioblastoma multiforme IV,One asshole resident gives me 6-18 months and I said “wanna bet” and 34 months later I write to you today.
Q1 2008 – I recover quickly from the surgery and start a course of radiation 6 weeks 5x per week. I also start a cclinical trial of Chemo(Temodar)
March 2008 – the night I will never forget. After completing the first course of radiation, my buddy Marky – who comes in from Phoenix. Throws me an amazing surprise party see the post “a night to remember a night I will never forget to see how amazing. My keyboard is still dry at this point and if I write too much more about it, I will cry all over it. Thanks again to everyone who came from far and near.
10/15/2009
After several clear MRIs, the Tumor comes back. Dr. Crute again performs a tumor resection. This time I had a little stroke during the surgery and spend2 weeks at inpatient rehab doing physical therapy, Occupational Therapy, and speech therapy along with 6-8 weeks of outpatient therapy.
11/2009 I start Avastin treatment before Thanksgiving evey two weeks.
3/29/2010
Its back again, but this time we do a non-invasive Stereotactic radiosurgery to NUKE the tumor. That works wonderfully and I get a clear MRI in May. Fast forward to 10/4/2010 – New MRI, get the results on 10/4
**********Current Day
MRI results Day – Its Back again. This time in 3 or 4 pieces. They cannot treat with Chemo or radiosurgery or crainiotomy. However, DEM SMART Doctors strike again. My Radiation oncologist, Dr. Roberts at UW, invented a new delivery method for radiation to allow for retreatment delivery of Radiation and its called Pulsed reduced dose rate Radiotherapy. It is the same dose delivered over longer period of time. I will begin this 10/12 and continue every weekday for 27 days.
Well folks, that brings us up to current day. There has been a lot of other things going on in the past few months, but I will save that for my next post that I will soon. The Fight goes on, and as always, I will never give up. Thanks for allowing me to express myself.
Sor ry for the long delay in my posts. 2010 has been a bit crazy. What I thought I would do today is have a catchup day. For you new followers I will give the readers digest/speed racer condensed version of my Cancer Journey. If you want the full story, please read my past posts from the beginning, which I encourage. Here is the quick chronological story:
12/27/2007 – You have an inner ear infection…ooops I mean Brain Tumor
1/29/2007 – Dr. Crute removes Tennis ball from my right temporal lobe in a quick 12 hour surgery. Friends and familysit in uncomfortable chairs in the waiting room and Lyle saves the day with Jimmy Johns. When pathology comes back we find out that I have a Glioblastoma multiforme IV,One asshole resident gives me 6-18 months and I said “wanna bet” and 34 months later I write to you today.
Q1 2008 – I recover quickly from the surgery and start a course of radiation 6 weeks 5x per week. I also start a cclinical trial of Chemo(Temodar)
March 2008 – the night I will never forget. After completing the first course of radiation, my buddy Marky – who comes in from Phoenix. Throws me an amazing surprise party see the post “a night to remember a night I will never forget to see how amazing. My keyboard is still dry at this point and if I write too much more about it, I will cry all over it. Thanks again to everyone who came from far and near.
10/15/2009
After several clear MRIs, the Tumor comes back. Dr. Crute again performs a tumor resection. This time I had a little stroke during the surgery and spend2 weeks at inpatient rehab doing physical therapy, Occupational Therapy, and speech therapy along with 6-8 weeks of outpatient therapy.
11/2009 I start Avastin treatment before Thanksgiving evey two weeks.
3/29/2010
Its back again, but this time we do a non-invasive Stereotactic radiosurgery to NUKE the tumor. That works wonderfully and I get a clear MRI in May. Fast forward to 10/4/2010 – New MRI, get the results on 10/4
**********Current Day
MRI results Day – Its Back again. This time in 3 or 4 pieces. They cannot treat with Chemo or radiosurgery or crainiotomy. However, DEM SMART Doctors strike again. My Radiation oncologist, Dr. Roberts at UW, invented a new delivery method for radiation to allow for retreatment delivery of Radiation and its called Pulsed reduced dose rate Radiotherapy. It is the same dose delivered over longer period of time. I will begin this 10/12 and continue every weekday for 27 days.
Well folks, that brings us up to current day. There has been a lot of other things going on in the past few months, but I will save that for my next post that I will soon. The Fight goes on, and as always, I will never give up. Thanks for allowing me to express myself.
Wednesday, May 26, 2010
Good - Great - Exceptional, and SPECTACULAR
Well, I have been having a pretty great week so far. Team Talbott showed up in force for the ABTA 5K at Soldier Field on Saturday. We raised over $5500 as a team. Thank you to everyone that donated and participated. It means more to me than I can express in words. However, today was the day for my first MRI since I had the Stereotactic Radiosurgery in March. As always, my nerves were on edge and sleep was difficult to get last night.
Here is where the GREAT comes into play. I had the MRI and proceeded to the lab for blood tests and then to see doc #1 for the day... Dr. Mehta (Radiation oncologist extraordinare) he took a look at the MRI images and came in and informed us that they looked GOOD! That alone made my day...but wait it gets better. After Mehta, we went to see Dr. Ian Robins (NeuroOncologist extraordinare)we went from the waiting room to the treatment room and through the standard routine...I lost Three Pounds! Woo Hoo only 30 more to go. So we are waiting for Ian to come into the treatment room. And waiting, and waiting. Kim and I already know the MRI is good, but Ian is starting to make us nervous. He comes in and apologies for being late, but he was studying the MRI, and studying. The results? The tumor aka lesion is GONE. Totally regressed. Exceptional right? NO. Apparently there is a clinical correlation between my being on Avastin treatment (ie Chemo) and having Stereotactic Radiosurgery. The Avastin works to clean out necrosis and assists in the nuclear anhilation of the tumor! So I asked the stupid question...This is good right? He says No, This is Spectacular, and amazing. He thinks this will be the protocol for this procedure in the future! Having that crazy smart doc of mine saying the results are spectacular is one for the record books. Usually, he is real cautious on the good news, but NOT TODAY!!
So if you are following along, GOOD=clean MRI, Great=Tumor regression Exceptional = Cancer docs at a loss for words, and SPECTACULAR = Dr. Robins saying the lesion is gone and lets increase space between MRIs from every 8 weeks to every 10 weeks.
LIFE is good!
Thank you everyone for the continued prayers! They result in SPECTACULAR things.:)
If it is not to much to ask, please keep my Father in your prayers as well. He is battling inoperable liver cancer. He is fighting like the trooper and old Farm Boy that he is, but I know the power and value of your Prayers.
Thank you all!
Peace Out!
Here is where the GREAT comes into play. I had the MRI and proceeded to the lab for blood tests and then to see doc #1 for the day... Dr. Mehta (Radiation oncologist extraordinare) he took a look at the MRI images and came in and informed us that they looked GOOD! That alone made my day...but wait it gets better. After Mehta, we went to see Dr. Ian Robins (NeuroOncologist extraordinare)we went from the waiting room to the treatment room and through the standard routine...I lost Three Pounds! Woo Hoo only 30 more to go. So we are waiting for Ian to come into the treatment room. And waiting, and waiting. Kim and I already know the MRI is good, but Ian is starting to make us nervous. He comes in and apologies for being late, but he was studying the MRI, and studying. The results? The tumor aka lesion is GONE. Totally regressed. Exceptional right? NO. Apparently there is a clinical correlation between my being on Avastin treatment (ie Chemo) and having Stereotactic Radiosurgery. The Avastin works to clean out necrosis and assists in the nuclear anhilation of the tumor! So I asked the stupid question...This is good right? He says No, This is Spectacular, and amazing. He thinks this will be the protocol for this procedure in the future! Having that crazy smart doc of mine saying the results are spectacular is one for the record books. Usually, he is real cautious on the good news, but NOT TODAY!!
So if you are following along, GOOD=clean MRI, Great=Tumor regression Exceptional = Cancer docs at a loss for words, and SPECTACULAR = Dr. Robins saying the lesion is gone and lets increase space between MRIs from every 8 weeks to every 10 weeks.
LIFE is good!
Thank you everyone for the continued prayers! They result in SPECTACULAR things.:)
If it is not to much to ask, please keep my Father in your prayers as well. He is battling inoperable liver cancer. He is fighting like the trooper and old Farm Boy that he is, but I know the power and value of your Prayers.
Thank you all!
Peace Out!
Wednesday, May 19, 2010
ABTA
Saturday is the ABTA Path to Progress 5K at Soldier Field in Chicago. This is an event that raises money for brain tumor research. I did this event last year and it proved to be an emotional but uplifting event. I have been looking forward to this event all year. THis year we created "Team Talbott" and have raised over $3600 for brain tumor research!! Most importantly I have a team of friends and supporters joining me in the walk. In case you haven't noticed in my posts over the last 2+ years, I have some absolutely amazing friends. Bringing them together for this cause is breathtaking! When my hope is challenged, as it has been over the past month or so due to the challenges in my father's Health, I always think of my support group and what they mean to me. Within minutes, my spirits are lifted! I will post pictures and thoughts after the event this weekend! Go Team Talbott! THank you for all you do.
Peace out!
Peace Out!
Peace out!
Peace Out!
Wednesday, April 14, 2010
A Smile to end your day
I went to Madison today for treatment. My buddy Lyle drove me. Thanks Lyle.
My day started outstanding. After getting to Lyle's house for the ride North, I not only got a refill on the coffee, but I got a big hug from his gorgeous 3 year old daughter AVA! Made me smile right from the start.
We continued on our way and had a great time catching up (except for the time I napped) :).
After I got home and finished up work for the day, I checked my email and got this from Lyle:
When I got home today, Ava asked me “where’s Steve?”. I told her you went home. She then went crying to Laura and said “mommy, Steve went home!!”.
Just wanted to share that…
Made my whole day! and to steal Lyle's line.... I Just wanted to share that! :)
For Little Miss Ava,
Peace Out!
My day started outstanding. After getting to Lyle's house for the ride North, I not only got a refill on the coffee, but I got a big hug from his gorgeous 3 year old daughter AVA! Made me smile right from the start.
We continued on our way and had a great time catching up (except for the time I napped) :).
After I got home and finished up work for the day, I checked my email and got this from Lyle:
When I got home today, Ava asked me “where’s Steve?”. I told her you went home. She then went crying to Laura and said “mommy, Steve went home!!”.
Just wanted to share that…
Made my whole day! and to steal Lyle's line.... I Just wanted to share that! :)
For Little Miss Ava,
Peace Out!
Sunday, March 28, 2010
It's Baaaack Redux
So last Wednesday , I had my MRI check-up and that damn tumor is back. That is the bad news. the good news is that we are going to treat it with a non- invasive "Stereotactic Radiosurgery tomorrow Monday. This is an outpatient procedure using radiation to blast the tumor cells from hundreds of different angles with surgical accuracy without a cut.
So the process goes like this
1. Arrive at UW Cancer CLinic at 6am Monday 3/29..
2. get a "frame" placed on my head. 4 pins that hold it break the skin. I will wear this frame all day. Apparently this is the most painful part. they will give me a local anesthetic and valium (so I got that going for me. :)
3. with the frame on, I will get a ct scan. Dem smart docs will then go into a planning session to plan the surgery (think Really High level physics)
4. once the plan is done, they will take me into the Linear Accelerator (radiation machine)and I will receive the radiation blast. We won't know exactly how long the radiation will take until the planning is done, but 30-45 min is common. Once the surgery is done, they take off the frame and send me home! The Radiation doesn't hurt, it is about as painful as an Xray. I will be really fatigued for a couple days and have potentially have some eye puffiness late next week, but that's it. I will have a follow up MRI in a month which will hopefully show NO tumor growth and hopefully dead tumor. I go right back to my chemo schedule of every other Wednesday
So the tumor is back, which is not a huge surprise as we have always known that this thing will keep coming back. I am happy that my medical team is able to treat this with a noninvasive procedure. It is what it is and I will continue to fight this with everythng that I have!
The fight brngs me to the real reason for this post. When people find out that I am fighting Brain Cancer, they inevitably ask me how I can stay positive and smile. My answer is usually, it is what it is. Obviously, my family gives me strength as does my faith.
When I was freshman in college at Iowa State (GO CYCLONES!) I had periods of time where the life adjustment was difficult on me. I had a friend at the time who recognized what I was going through and gave me something that I still have to this day. It is a poem by an unknown author. For the past 20+ years, whenever I ran into a situation that I may have briefly considered giving up, I pull out this poem and reread it. I wanted to share it with you today. I hope you enjoy.
Don't Quit
When things go wrong as they sometimes wll;
Whe the road you're trudginig seems all uphill;
When the funds are low, and debts are high;
And you want to smile, but have to sigh;.
When care is pressing you down a bit-
Success is failure turned inside out;
The silver tint of the clouds of doubt;
And you can never tell how close you are;
t may be near when it seems afar.
So,stick to the fight when you're hardest hit-
It's when things go wrong that you must not quit.
Its a simple Poem that has helped me more times than I can count.
Never Never Quit!
Thank You SMITH Kinney!- my brother PHi Delt (My fraternity Phi Delta Theta) who Originally shared this with me in Late 1987.
Thank you all for your thoughts and prayers!
Peace Out!
So the process goes like this
1. Arrive at UW Cancer CLinic at 6am Monday 3/29..
2. get a "frame" placed on my head. 4 pins that hold it break the skin. I will wear this frame all day. Apparently this is the most painful part. they will give me a local anesthetic and valium (so I got that going for me. :)
3. with the frame on, I will get a ct scan. Dem smart docs will then go into a planning session to plan the surgery (think Really High level physics)
4. once the plan is done, they will take me into the Linear Accelerator (radiation machine)and I will receive the radiation blast. We won't know exactly how long the radiation will take until the planning is done, but 30-45 min is common. Once the surgery is done, they take off the frame and send me home! The Radiation doesn't hurt, it is about as painful as an Xray. I will be really fatigued for a couple days and have potentially have some eye puffiness late next week, but that's it. I will have a follow up MRI in a month which will hopefully show NO tumor growth and hopefully dead tumor. I go right back to my chemo schedule of every other Wednesday
So the tumor is back, which is not a huge surprise as we have always known that this thing will keep coming back. I am happy that my medical team is able to treat this with a noninvasive procedure. It is what it is and I will continue to fight this with everythng that I have!
The fight brngs me to the real reason for this post. When people find out that I am fighting Brain Cancer, they inevitably ask me how I can stay positive and smile. My answer is usually, it is what it is. Obviously, my family gives me strength as does my faith.
When I was freshman in college at Iowa State (GO CYCLONES!) I had periods of time where the life adjustment was difficult on me. I had a friend at the time who recognized what I was going through and gave me something that I still have to this day. It is a poem by an unknown author. For the past 20+ years, whenever I ran into a situation that I may have briefly considered giving up, I pull out this poem and reread it. I wanted to share it with you today. I hope you enjoy.
Don't Quit
When things go wrong as they sometimes wll;
Whe the road you're trudginig seems all uphill;
When the funds are low, and debts are high;
And you want to smile, but have to sigh;.
When care is pressing you down a bit-
Success is failure turned inside out;
The silver tint of the clouds of doubt;
And you can never tell how close you are;
t may be near when it seems afar.
So,stick to the fight when you're hardest hit-
It's when things go wrong that you must not quit.
Its a simple Poem that has helped me more times than I can count.
Never Never Quit!
Thank You SMITH Kinney!- my brother PHi Delt (My fraternity Phi Delta Theta) who Originally shared this with me in Late 1987.
Thank you all for your thoughts and prayers!
Peace Out!
Monday, March 15, 2010
Seasons Changing, Attitude improving
I apologize for not writing these past couple months, but I have been focusing my energies on re-engaging in our business. Jeff and I are working with a Marketing Group to help us rebrand our company. We are incredibly fortunate in that our business is doing well and we are actually hiring new employees and plan to bring on a couple more in addition to our onsite contract staff. Jeff has been fantastic growing our business while I was out.The weather in Northern Illinois is beginning to change and Spring is starting to show. I am excited for the weather improvement mainly because I have spent the Winter gaining back all of the weight I lost in the hospital last Fall. the change in the weather is finally allowing me to g et outside and begin biking again which I hope will help to slim my fat ass down.:) the first week of April, I have a conference in Vegas! Woo Hoo!, and Kim is going to Join me. It works out that school is out that week and she is in need of some rest and relaxation in the sun.
So the latest Health update is that the Avastin (Chemo) that I receive every other Wed at UW seems to be doing its job, my next MRI is March 24th. Overall, I have been feeling good other than the daily fight with allergies, which is normal with the change of seasons.
MAY 22, 2010 I will be walking in the American Brain Tumor Association Path To Progress 5K at Soldier Field in Chicago for Brain Tumor research. My great friend Mark Patrick is helping me this year. We have set up Team Talbott, and would love you to join us either by walking with us, or with your donation Any help you can give would be greatly appreciated and will go to a great cause! Check out the link and Thank You in advance
http://hope.abta.org/goto/Steven_Talbott
Peace out!!
So the latest Health update is that the Avastin (Chemo) that I receive every other Wed at UW seems to be doing its job, my next MRI is March 24th. Overall, I have been feeling good other than the daily fight with allergies, which is normal with the change of seasons.
MAY 22, 2010 I will be walking in the American Brain Tumor Association Path To Progress 5K at Soldier Field in Chicago for Brain Tumor research. My great friend Mark Patrick is helping me this year. We have set up Team Talbott, and would love you to join us either by walking with us, or with your donation Any help you can give would be greatly appreciated and will go to a great cause! Check out the link and Thank You in advance
http://hope.abta.org/goto/Steven_Talbott
Peace out!!
Thursday, January 28, 2010
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!
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!
Monday, January 18, 2010
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!
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!
Thursday, December 31, 2009
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!
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!
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
Sunday, November 1, 2009
Steve's Day Out X2!!
Hello, hope everyone enjoyed Halloween!
Steve had a great Halloween weekend, as did I and the dogs. Both Saturday and Sunday Steve was able to come home!!!
Day passes only he had to go back each night but we made the most of it. Saturday was a trip to the local coffee shop for his favorite sandwich and to touch base with our friends Rocco and Jan, then home for some time with the boys and a nap. Ordered in dinner and on the way back to the hospital went to the local ice cream shop to see Steve's "ice cream girlfriend" for the infamous medium vanilla with twinkle cone.
Sunday was a regular old Sunday for us...breakfast at the cafe, nap and football. Did I mentioned the bears won!! Steve got to log on to his computer at his desk in his office and nap on his "resting couch", all in all a great weekend!
Things are going well in regards to the rehab. Balance is getting better and he is walking pretty well, the left foot gives him some trouble once he starts getting tired but other than that he is doing well. Still focusing on improving the "executive function" they spoke of after one eval but that is coming back too.
His staples came out Friday night, a bit of a surprise to both of us, we thought that was happening on Monday but the order came through and one of the nurses took them out Friday night. I think they wanted them out before he went out on a pass.
Steve is having some pain in his jaw on the left side, he continues to stick with the story that one of the nurses came in at night and popped him in the jaw. I told him if he wouldn't mouth off and if he would just do what they say that wouldn't have happened. It is better than it was just two days ago so, that is a good thing.
We go to Dr. Crute tomorrow morning for a follow up appointment, don't know what she will have to say but we are both eager to talk to her. Also going to contact Madison to see what the next step is with them. Always something.
Overall, things are going pretty well, yeah, I really said that. Given that Steve has been in the hospital (regular or rehab) for over 2 weeks, and has at least a few more days to go, things are going pretty well.
Each day Steve gets stronger and is able to do a little more. We have fantastic friends that call, email, drop in etc. and we have Jeff. Seriously everyone needs a Jeff. I really recommend one. :) Sometime in my life I will find a way to thank him for all that he has done and continues to do during this whole thing. Sometime. While being the rock that keeps Steve in tune with the business and keeps the business rolling, he also keeps me "sane" or as sane as I can be. No small feat there. While doing all this he manages to coach a local football team which just so happened to win their first ever playoff game Saturday!! Way to go Coach!!
Well, I think you are caught up on the happenings of the weekend, overall it was great. I anticipate Steve coming home fairly soon. If we get any funky info from Dr. Crute, I'll let you know. I'll also keep you posted on Steve's homecoming date.
Thanks again for all the love, support, prayers and warm thoughts you have sent our way, they are appreciated and they are working.
Peace and Love,
Kim & Steve
Steve had a great Halloween weekend, as did I and the dogs. Both Saturday and Sunday Steve was able to come home!!!
Day passes only he had to go back each night but we made the most of it. Saturday was a trip to the local coffee shop for his favorite sandwich and to touch base with our friends Rocco and Jan, then home for some time with the boys and a nap. Ordered in dinner and on the way back to the hospital went to the local ice cream shop to see Steve's "ice cream girlfriend" for the infamous medium vanilla with twinkle cone.
Sunday was a regular old Sunday for us...breakfast at the cafe, nap and football. Did I mentioned the bears won!! Steve got to log on to his computer at his desk in his office and nap on his "resting couch", all in all a great weekend!
Things are going well in regards to the rehab. Balance is getting better and he is walking pretty well, the left foot gives him some trouble once he starts getting tired but other than that he is doing well. Still focusing on improving the "executive function" they spoke of after one eval but that is coming back too.
His staples came out Friday night, a bit of a surprise to both of us, we thought that was happening on Monday but the order came through and one of the nurses took them out Friday night. I think they wanted them out before he went out on a pass.
Steve is having some pain in his jaw on the left side, he continues to stick with the story that one of the nurses came in at night and popped him in the jaw. I told him if he wouldn't mouth off and if he would just do what they say that wouldn't have happened. It is better than it was just two days ago so, that is a good thing.
We go to Dr. Crute tomorrow morning for a follow up appointment, don't know what she will have to say but we are both eager to talk to her. Also going to contact Madison to see what the next step is with them. Always something.
Overall, things are going pretty well, yeah, I really said that. Given that Steve has been in the hospital (regular or rehab) for over 2 weeks, and has at least a few more days to go, things are going pretty well.
Each day Steve gets stronger and is able to do a little more. We have fantastic friends that call, email, drop in etc. and we have Jeff. Seriously everyone needs a Jeff. I really recommend one. :) Sometime in my life I will find a way to thank him for all that he has done and continues to do during this whole thing. Sometime. While being the rock that keeps Steve in tune with the business and keeps the business rolling, he also keeps me "sane" or as sane as I can be. No small feat there. While doing all this he manages to coach a local football team which just so happened to win their first ever playoff game Saturday!! Way to go Coach!!
Well, I think you are caught up on the happenings of the weekend, overall it was great. I anticipate Steve coming home fairly soon. If we get any funky info from Dr. Crute, I'll let you know. I'll also keep you posted on Steve's homecoming date.
Thanks again for all the love, support, prayers and warm thoughts you have sent our way, they are appreciated and they are working.
Peace and Love,
Kim & Steve
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