It has been a bit of a roller coaster ride this week, plus… I found out last Monday night that my genetic markers were NOT a match and therefore I am not a prime candidate for Tarceva. This was a strong hope I was holding out for… That left us with the clinical trial option, which we set up for this Wednesday, 3/26.
In the mean time, in setting up the clinical trial base-line scans, my brain scan came back with some bad/strange news. The scan shows two active tumor lesions but there is confusion as to what exactly is being seen (meaning there may not actually be active lesions). The U of C wants it’s own Radiologist to review it and Dr. Maitland says that this changes the game somewhat… And not necessarily, entirely negatively; The brain is easy to radiate, either with whole brain radiation (broadcast to entire head) or with Gamma Knife radiation (pin points tumors only). So there was not as much concern as I would have guessed.
Next up is my pain story... Dr. Maitland recommended that we go to University of Chicago’s Pain Clinic to explore changing my pain meds/regiment. That appointment went very well. We are changing the game here, too. I switched to Methadone, which to my understanding, does a more effective job of blocking the pain receptors, enabling a much smaller dose of the drug than what I am currently taking of the Oxycodone. We started that regimen last Thursday and I can report (praise, God!!!!) that my pain has been under control for the first time we’ve been in Illinois. I am also excited about reducing my dosing on the Oxycontin IR for break through pain. I am down to only 1-2 doses and can envision the chance to finally kick this pain I have had since coming to Illinois. Yeah!
Dr. Maitland and I met again this past Monday, 3/24, to go over our new plan… More roller coaster… To start, he had two U of C radiologists review my brain scan. They all think putting chemo on hold for a bit longer and moving forward with Whole Brain Radiation is the way to go. Not happy about that, but it really seems to be my only option here. I will definitely lose my hair and there is a 50% chance that that hair loss will be permanent. There will be fatigue for sure. And there are also risks with regard to both short and/or long term loss of cognitive function, short term memory loss, impact on fine motor skills, etc… I am told I am less at risk due to my age (again, most people are in the 60’s when going through this stuff) and that I have a high level of cognitive function already, despite what my wife says…
As far as the chemo plan, we will start that up approximately 1 week after the radiation treatment, which will be 14 straight business days, starting tomorrow (Wednesday 3/26).
So here’s the good news… We are NOT going through with the clinical trial chemo plan, but instead, are going back to try the Tarceva. That was an unexpected possibility. Apparently I did have an one unexplainable genetic code in the tumor and I still matched the profile of young, non-smoker profile, so the Tarceva still may have a good chance of working.
So, despite the brain lesion and whole brain radiation news, I am actually feeling strangely encouraged and upbeat. Maybe I am channeling some of the “Peace that passes all understanding!”
Please pray for me to NOT have any of the side effects (especially not long term) of the whole brain radiation.
Please pray for my faith to continue to grow and strengthen.
Please pray that this radiation will clear my head of all brain tumors, permanently.
Peace and love,
Eric
Tuesday, March 25, 2008
Sunday, March 16, 2008
SXSW Trip 3/16/08
Hello all! Today is Palm Sunday. Hosanna in the highest! I hope you are all had nice services at your churches today. I will try to keep this week a little more thoughtful and prayerful with regard to the amazing plan/mystery that God laid out for us. That, and NCAA March Madness starts Thursday. So there are a lot of reasons for praise this week!!!
The last week was a fun one for Amy and I. We flew out Wednesday night to Austin, TX to see my brother Scott and his wife and two kids, and to spend time at the South by Southwest Music Festival; something I have been wanting to see in person for years. SXSW was everything I hoped it would be. Imagine 1500 bands descending on Austin, TX, from all over the world, all trying to get their break. The only problem is that there is just too much to see. You can’t possibly see everybody, so you have to do your homework and find out where bands are playing and when, all the while leaving space in your schedule to hear new acts you have never heard of to stay in the spirit of discovery the festival promotes. Scott set up this trip and itinerary and we were in great hands… We saw about 4-5 bands per day and Scott and Amy took turns pushing the wheelchair that the American Cancer Society loaned us. The highlights: The Black Keys (I have seen them twice previously – one of my favorite bands) and a band from Norway called “Big Bang”. Big Bang was one of our random finds. They were playing at a place called Maggie Mae’s Taco Express that we stopped at for food. They really rocked and the tacos were fantastic. We marveled at the idea of such good talent playing taco joints… Later that night we Googled them and discovered they are the best selling rock act in Norway’s history. How random… Just underscores the cool vibe of the festival.
Here’s the other definite benefit of our trip: The Weather! We had 80 degree days and 65 degree nights and mornings, with the sun shining every minute. Amazing. I wore shorts and a T-shirt the whole time and got lots of sun. Unfortunately, we had to leave and return to reality. Point in fact: Despite the fact it is Mid-March, Chicago still has 30 degree weather… When does spring officially start??? Soon I hope.
We flew back Saturday late afternoon, arriving tired but ready to see the kids. I held up very well and was so glad my brother organized the trip.
As far as what’s next treatment-wise, I am still waiting… We had our follow up appointment with Dr. Maitland of University of Chicago last Wednesday and still have had no word back from the labs as far as my match for the drug Tarceva. He was promised a response tomorrow, Monday 3/17, so I should hear in the next day or two.
In absence of a response, or a negative response, it looks like I will then be a part of a clinical trial, starting chemo therapy as early as Wednesday, 3/19, of this coming week (!). I definitely am not feeling enthused by that, especially since the main purpose of the trial is to see how BIG the dose can be (above the currently FDA-approved doses) without pushing the patients into massive side effects. Unfortunately, there may be some difficult days or weeks as we find what my most “beneficial” dosing will be.
I will need your prayers for strength if we go the clinical trial-route. I am not feeling very brave about it, fearing the side effects… Call me vane, but I also have almost a full head of hair back and don’t really want to lose it again! That is actually not a real concern. But the idea of feeling sick all of the time again is not enticing.
That all said, if it will work, bring it on…
Talk to you all again, soon.
Love and Peace,
Eric
The last week was a fun one for Amy and I. We flew out Wednesday night to Austin, TX to see my brother Scott and his wife and two kids, and to spend time at the South by Southwest Music Festival; something I have been wanting to see in person for years. SXSW was everything I hoped it would be. Imagine 1500 bands descending on Austin, TX, from all over the world, all trying to get their break. The only problem is that there is just too much to see. You can’t possibly see everybody, so you have to do your homework and find out where bands are playing and when, all the while leaving space in your schedule to hear new acts you have never heard of to stay in the spirit of discovery the festival promotes. Scott set up this trip and itinerary and we were in great hands… We saw about 4-5 bands per day and Scott and Amy took turns pushing the wheelchair that the American Cancer Society loaned us. The highlights: The Black Keys (I have seen them twice previously – one of my favorite bands) and a band from Norway called “Big Bang”. Big Bang was one of our random finds. They were playing at a place called Maggie Mae’s Taco Express that we stopped at for food. They really rocked and the tacos were fantastic. We marveled at the idea of such good talent playing taco joints… Later that night we Googled them and discovered they are the best selling rock act in Norway’s history. How random… Just underscores the cool vibe of the festival.
Here’s the other definite benefit of our trip: The Weather! We had 80 degree days and 65 degree nights and mornings, with the sun shining every minute. Amazing. I wore shorts and a T-shirt the whole time and got lots of sun. Unfortunately, we had to leave and return to reality. Point in fact: Despite the fact it is Mid-March, Chicago still has 30 degree weather… When does spring officially start??? Soon I hope.
We flew back Saturday late afternoon, arriving tired but ready to see the kids. I held up very well and was so glad my brother organized the trip.
As far as what’s next treatment-wise, I am still waiting… We had our follow up appointment with Dr. Maitland of University of Chicago last Wednesday and still have had no word back from the labs as far as my match for the drug Tarceva. He was promised a response tomorrow, Monday 3/17, so I should hear in the next day or two.
In absence of a response, or a negative response, it looks like I will then be a part of a clinical trial, starting chemo therapy as early as Wednesday, 3/19, of this coming week (!). I definitely am not feeling enthused by that, especially since the main purpose of the trial is to see how BIG the dose can be (above the currently FDA-approved doses) without pushing the patients into massive side effects. Unfortunately, there may be some difficult days or weeks as we find what my most “beneficial” dosing will be.
I will need your prayers for strength if we go the clinical trial-route. I am not feeling very brave about it, fearing the side effects… Call me vane, but I also have almost a full head of hair back and don’t really want to lose it again! That is actually not a real concern. But the idea of feeling sick all of the time again is not enticing.
That all said, if it will work, bring it on…
Talk to you all again, soon.
Love and Peace,
Eric
Sunday, March 2, 2008
A hint of spring??? 3/2/08
A hint of spring??? Since it is finally March, maybe we can finally say good-bye to single digit temperatures? Is that too much to hope for? We actually had a balmy day today. Sunshine and temps in the 40’s… Whoa...
I had a major setback 3 weeks ago that led to a new record hospital stay for me: 7 days. I had been steadily feeling worse and worse back pain-wise, but I was also getting very sick with a flu-like illness the whole family was sharing that had me coughing like I never have coughed before. My chest ached with each fit that racked my body. On Valentine’s Day night, I was in the bad position of not being able to sit or lay upright (due to my back pain) and not able to lay down do to the coughing and congestion. Amy literally listened to me struggle with life for 20 minutes in bed and forced me to go the emergency room (many of you know how persuasive Amy can be).
Thank God my parents are here (or that we are here…). We called them as they were coming out of the evening’s Drury theatre performance and they came right over to watch the kids. We arrived at the ER around 11pm and I got admitted to the hospital around 3am. Fortunately they got things under control fairly quickly and I was able to lay down and get some sleep. The rest of the week I was in an isolation room with a MRSA Staff infection in my chest and MRI’s done Friday showed the tumors at T4 and T10 were encroaching on my spinal column, with the T10 tumor actually already pressing against my spinal cord. This was another emergency situation, where something called “cord compression” was immanent any day, where I could experience not only pain, but temporary to permanent paralysis. They called in a radiation team on Saturday and Sunday to start treatments for me right away…
So once again, we dodged a major bullet because of an emergency room visit for an seemingly in related thing. I guess the flu was a blessing, because I probably would have toughed out the pain piece a lot longer.
My right hip pain had also flared up and of course with the MRI, they also didn’t like what they saw in my right hip/femur and started radiation there too. I am actually having to walk with a cane right now. This sucks. I hope the radiation helps with this fast. I do not like walking with a cane for many reasons, least of which it is a hassle to carry stuff and walk.
Lastly, because my back pain seemed recurring at the pelvis and sacrum areas, they developed a radiation plan to hit them again as well. I did 10 days at all three areas and finished those this past Friday. Glad to be done of that. I forgot how fatiguing radiation can be. I will experience the fatigue for a few weeks more despite the fact the actual treatment is done as my body sorts out what it was subjected to.
Additionally, they ramped up my pain meds to really high doses (that I am not really comfortable taking, but need to), to deal with the pain. It was essentially a doubling.
So… The week was long and discouraging. Every day I was in the hospital I fell into kind of a deeper malaise. I really think I was becoming clinically depressed. Pessimistic discussions from my local oncologist didn’t help… Fortunately, I was able to convince them to let me out the following Thursday and things are much better.
The following week (last week), I had a follow-up CT Scan and appointment with my University of Chicago oncologist, Dr. Michael Maitland. That went very well. My parents got a chance to meet him and they were equally impressed as I had been. He compared the scan from the one done in January and told us that the cancer in not on a runaway train. That in fact it was stable and showed no change between the two scans. He also has a plan for me for my next steps. We are going to stop my second line chemo treatment of Alimpta, as it doesn’t seem to be doing good or bad. We are going to pursue an oral chemo drug called Tarceva.
From what I know, Tarceva seems like it is largely a “maintenance” drug, one that keeps the cancer at bay while people take it. But in about 10% of the people who take it, it is extremely successful at shrinking tumors. They have determined that there is a specific genetic make up for the people who fit the 10% group and the U of C is testing my DNA this week to see if I fit that population.
THIS IS THE MAJOR PRAYER REQUEST RIGHT NOW!!!!!! That I fit this genetic profile… I should know by the end of this week. If I don’t fit, we may go ahead and try it anyway. Otherwise, we go to a third line chemo treatment plan from one of U of C’s many clinical trials. Dr. Maitland already has his eye on 2-3 that I might fit into well.
Thanks to the many, many cards I have received over the last few weeks. Your thoughtful words and encouragement really lifts me up. Spiritually, I am doing much better as well.
In fact, in worship today, we heard this song which God clearly wanted me to hear… The lyrics are SO appropriate for where I am and how I am feeling.
“My Savior My God” by Aaron Shust
VERSE 1
I am not skilled to understand
What God has willed, what God has planned
I only know at His right hand
Stands one who is my Savior
I take Him at His word and deed
Christ died to save me; this I read
And in my heart I find a need
Of Him to be my savior
That He would leave His place on high
And come for sinful man to die
You count it strange, so once did I
Before I knew my Savior
CHORUS
My Savior loves, My Savior lives
My Savior's always there for me
My God: He was, my God; He is
My God is always gonna be
VERSE 2
Yes, living, dying, let me bring
My strength, my solace from this spring;
That He who lives to be my King
Once died to be my Savior
That He would leave His place on high
And come for sinful man to die
You count it strange, so once did I
Before I knew my Savior
CHORUS
My Savior loves, My Savior lives
My Savior's always there for me
My God: He was, my God; He is
My God is always gonna be
This is a popular new song on Christian radio right now and is also a nice praise and worship song. I don’t know a lot about the artist, but this song is fantastic.
I will sign off for now but wanted to let you know that I am feeling called to be blogging more frequently than I have been. To not simply wait until there are significant things to write about in my cancer fight, but to but touch more on my thoughts and feelings generally… So since I have been really lame previously on the frequency, you may find you actually need to check the archive to read a blog that may get superseded by a new one.
Peace and Love,
Eric
I had a major setback 3 weeks ago that led to a new record hospital stay for me: 7 days. I had been steadily feeling worse and worse back pain-wise, but I was also getting very sick with a flu-like illness the whole family was sharing that had me coughing like I never have coughed before. My chest ached with each fit that racked my body. On Valentine’s Day night, I was in the bad position of not being able to sit or lay upright (due to my back pain) and not able to lay down do to the coughing and congestion. Amy literally listened to me struggle with life for 20 minutes in bed and forced me to go the emergency room (many of you know how persuasive Amy can be).
Thank God my parents are here (or that we are here…). We called them as they were coming out of the evening’s Drury theatre performance and they came right over to watch the kids. We arrived at the ER around 11pm and I got admitted to the hospital around 3am. Fortunately they got things under control fairly quickly and I was able to lay down and get some sleep. The rest of the week I was in an isolation room with a MRSA Staff infection in my chest and MRI’s done Friday showed the tumors at T4 and T10 were encroaching on my spinal column, with the T10 tumor actually already pressing against my spinal cord. This was another emergency situation, where something called “cord compression” was immanent any day, where I could experience not only pain, but temporary to permanent paralysis. They called in a radiation team on Saturday and Sunday to start treatments for me right away…
So once again, we dodged a major bullet because of an emergency room visit for an seemingly in related thing. I guess the flu was a blessing, because I probably would have toughed out the pain piece a lot longer.
My right hip pain had also flared up and of course with the MRI, they also didn’t like what they saw in my right hip/femur and started radiation there too. I am actually having to walk with a cane right now. This sucks. I hope the radiation helps with this fast. I do not like walking with a cane for many reasons, least of which it is a hassle to carry stuff and walk.
Lastly, because my back pain seemed recurring at the pelvis and sacrum areas, they developed a radiation plan to hit them again as well. I did 10 days at all three areas and finished those this past Friday. Glad to be done of that. I forgot how fatiguing radiation can be. I will experience the fatigue for a few weeks more despite the fact the actual treatment is done as my body sorts out what it was subjected to.
Additionally, they ramped up my pain meds to really high doses (that I am not really comfortable taking, but need to), to deal with the pain. It was essentially a doubling.
So… The week was long and discouraging. Every day I was in the hospital I fell into kind of a deeper malaise. I really think I was becoming clinically depressed. Pessimistic discussions from my local oncologist didn’t help… Fortunately, I was able to convince them to let me out the following Thursday and things are much better.
The following week (last week), I had a follow-up CT Scan and appointment with my University of Chicago oncologist, Dr. Michael Maitland. That went very well. My parents got a chance to meet him and they were equally impressed as I had been. He compared the scan from the one done in January and told us that the cancer in not on a runaway train. That in fact it was stable and showed no change between the two scans. He also has a plan for me for my next steps. We are going to stop my second line chemo treatment of Alimpta, as it doesn’t seem to be doing good or bad. We are going to pursue an oral chemo drug called Tarceva.
From what I know, Tarceva seems like it is largely a “maintenance” drug, one that keeps the cancer at bay while people take it. But in about 10% of the people who take it, it is extremely successful at shrinking tumors. They have determined that there is a specific genetic make up for the people who fit the 10% group and the U of C is testing my DNA this week to see if I fit that population.
THIS IS THE MAJOR PRAYER REQUEST RIGHT NOW!!!!!! That I fit this genetic profile… I should know by the end of this week. If I don’t fit, we may go ahead and try it anyway. Otherwise, we go to a third line chemo treatment plan from one of U of C’s many clinical trials. Dr. Maitland already has his eye on 2-3 that I might fit into well.
Thanks to the many, many cards I have received over the last few weeks. Your thoughtful words and encouragement really lifts me up. Spiritually, I am doing much better as well.
In fact, in worship today, we heard this song which God clearly wanted me to hear… The lyrics are SO appropriate for where I am and how I am feeling.
“My Savior My God” by Aaron Shust
VERSE 1
I am not skilled to understand
What God has willed, what God has planned
I only know at His right hand
Stands one who is my Savior
I take Him at His word and deed
Christ died to save me; this I read
And in my heart I find a need
Of Him to be my savior
That He would leave His place on high
And come for sinful man to die
You count it strange, so once did I
Before I knew my Savior
CHORUS
My Savior loves, My Savior lives
My Savior's always there for me
My God: He was, my God; He is
My God is always gonna be
VERSE 2
Yes, living, dying, let me bring
My strength, my solace from this spring;
That He who lives to be my King
Once died to be my Savior
That He would leave His place on high
And come for sinful man to die
You count it strange, so once did I
Before I knew my Savior
CHORUS
My Savior loves, My Savior lives
My Savior's always there for me
My God: He was, my God; He is
My God is always gonna be
This is a popular new song on Christian radio right now and is also a nice praise and worship song. I don’t know a lot about the artist, but this song is fantastic.
I will sign off for now but wanted to let you know that I am feeling called to be blogging more frequently than I have been. To not simply wait until there are significant things to write about in my cancer fight, but to but touch more on my thoughts and feelings generally… So since I have been really lame previously on the frequency, you may find you actually need to check the archive to read a blog that may get superseded by a new one.
Peace and Love,
Eric
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