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
Friday, November 27, 2009
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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