Johnna and i met with a new oncologist in Santa Rosa, CA and he was INCREDIBLE! Dr. Keiser is the guy we have been looking for. the other oncologists have left me with a sense that my diagnosis is just hopeless, this guy is looking for possibilities. He was hopeful, and even encouraged us to pursue the alternative/crazy treatments, he is going to look for some of them himself!
I'll get a new ct scan early next week, and this time we're doing a full body. I have some strange headaches and some numbness around my forehead so we are also checking the brain. Pray for us for hope, i have only received horrible news following all my scans so we get a little anxious.
We are also ready to head to mexico finally! once we have gotten our scan results i'll be heading out to a clinic in Acuna MX. Dr. Keiser informed us that the cancer is advancing in my liver, and it will pick up momentum as it advances. The clinic in Acuna is doing treatments specializing in liver tumors in addition to systemic treatments. Johnna and I are really excited to be able to move in this direction, and it is all thanks to the generosity and outpouring of care from all you wonderful friends!
Saturday, October 20, 2007
Monday, October 15, 2007
getting harder!
things are starting to get a little bit rougher, painful nights are a little more frequent, medication side effects a little more intense, i am a little less patient with my precious family ...
One big new detail, the oncologist in texas failed to ever mention an additional bone legion i have located in my hip. I was looking through all my medical records and read one little line on a ct scan that clearly states "legion present within the left ilium." It is located in the ball and socket part of the hip, and has been painful for several months. I am not sure how my oncologist could have failed to communicate that little tid bit! It also appears that there are more new tumors, and possibly one now in my pancreas, and the previous ones are growing, but not too quickly.
On a brighter note, we are finding a number of new treatment possibilities that are available to us that we are exploring. It is all a little overwhelming as there are quite a few new/experimental routes in addition to all the other treatments we have been considering. Pray for wisdom! MPNST cancer is such a rare cancer that very little is known about it, and there is not a lot of research being done. There is one clinical trial going on right now in Germany with a drug that has been successful on other types of sarcoma cancers, so i am hoping that i will be able to participate in that somehow. We also found several sarcoma centers that are pursuing new treatments as well so maybe they are on to something that will work!
as always, thank you all for the support and love, i am continually blessed by the outpouring of generosity and care.
One big new detail, the oncologist in texas failed to ever mention an additional bone legion i have located in my hip. I was looking through all my medical records and read one little line on a ct scan that clearly states "legion present within the left ilium." It is located in the ball and socket part of the hip, and has been painful for several months. I am not sure how my oncologist could have failed to communicate that little tid bit! It also appears that there are more new tumors, and possibly one now in my pancreas, and the previous ones are growing, but not too quickly.
On a brighter note, we are finding a number of new treatment possibilities that are available to us that we are exploring. It is all a little overwhelming as there are quite a few new/experimental routes in addition to all the other treatments we have been considering. Pray for wisdom! MPNST cancer is such a rare cancer that very little is known about it, and there is not a lot of research being done. There is one clinical trial going on right now in Germany with a drug that has been successful on other types of sarcoma cancers, so i am hoping that i will be able to participate in that somehow. We also found several sarcoma centers that are pursuing new treatments as well so maybe they are on to something that will work!
as always, thank you all for the support and love, i am continually blessed by the outpouring of generosity and care.
Sunday, October 7, 2007
done with radiation, again
well we have completed the radiation treatments to the spine. johnna and i had decided at one point that we weren't going to do any more radiation, however, all the dr.s we talked to (including some alternative ones) said that the best bet for addressing the back pain was radiation. sadly, it hasn't had any effect yet. the radiation continues to attack the cells for up to a week or more, so there still is a slight chance that i may get some pain relief out of it, but the radiation oncologist is saying that it is more likely that the amount of decay already caused by the tumor is probably just going to be a permanant pain. The biggest disapointment is i really hoped to get away from the pain meds. the meds have had a lot of side effects and complications, and require other medications to counter some of them, plus having an effect on my mood and even just feeling like i am in charge of my thoughts.
some good news is that there are a number of new treatment possibilities that are opening up here in california for us to explore, and that has been very exciting. hopefully there will be more on this to follow soon!
as always thank you all for your continued love, prayers and generosity. Johnna and i have experienced a complete support network just take over for us, and we are relieved to be able to focus on the battle for wellness. bless you all for your labors and gifts.
some good news is that there are a number of new treatment possibilities that are opening up here in california for us to explore, and that has been very exciting. hopefully there will be more on this to follow soon!
as always thank you all for your continued love, prayers and generosity. Johnna and i have experienced a complete support network just take over for us, and we are relieved to be able to focus on the battle for wellness. bless you all for your labors and gifts.
Wednesday, September 19, 2007
it's my birthday!
35 years old today, i figure that must be the halfway point for my lifespan, minimum. i have always teased that my kids owe me some dirty diaper changing and i fully plan on collecting that service from them when i am old.
spent the sunrise on bennett valley ridge this morning, watched the brightness of the stars become completely eclipsed by the power of the sun and it made me realize how much my faith and hope have grown in the last couple months. from the initial anxiety of 1 small tumor, to the depth of fear and darkness of the death sentence from 08/1/2007, johnna and i have been brought into a place of joy and intimacy that i have craved ALL MY LIFE! not to mention my relationship with God taking a consuming passionate reckless obsession. another hardly noticed byproduct has been the complete release of several giant issues of bitterness and regret and unforgiveness.
i have come to believe that God is never the source of disease, yet sometimes i am tempted to worship him for the cancer! i do not, i do curse this wickedness, and revile it, yet the pain and the struggle and loss of this season has produced so much to celebrate, i am left with nothing but gratitude. There are good days and bad days, including a terrifying hallucinegic mix of pain killers, but this adventure is a life worth living.
a few more details to update as well, i have completed 4 of 15 daily radiation treatments here in santa rosa ca. the last treatment is scheduled for october 3rd and then hopefully we can complete our road trip to Mt Shasta CA. We are also receiving much more comprehensive medical coverage afforded by the CA medi-cal program and it looks like there may be more resources and possibilities for conventional treatments available.
thanks again to all for the love and labor and generosity,
isaac
spent the sunrise on bennett valley ridge this morning, watched the brightness of the stars become completely eclipsed by the power of the sun and it made me realize how much my faith and hope have grown in the last couple months. from the initial anxiety of 1 small tumor, to the depth of fear and darkness of the death sentence from 08/1/2007, johnna and i have been brought into a place of joy and intimacy that i have craved ALL MY LIFE! not to mention my relationship with God taking a consuming passionate reckless obsession. another hardly noticed byproduct has been the complete release of several giant issues of bitterness and regret and unforgiveness.
i have come to believe that God is never the source of disease, yet sometimes i am tempted to worship him for the cancer! i do not, i do curse this wickedness, and revile it, yet the pain and the struggle and loss of this season has produced so much to celebrate, i am left with nothing but gratitude. There are good days and bad days, including a terrifying hallucinegic mix of pain killers, but this adventure is a life worth living.
a few more details to update as well, i have completed 4 of 15 daily radiation treatments here in santa rosa ca. the last treatment is scheduled for october 3rd and then hopefully we can complete our road trip to Mt Shasta CA. We are also receiving much more comprehensive medical coverage afforded by the CA medi-cal program and it looks like there may be more resources and possibilities for conventional treatments available.
thanks again to all for the love and labor and generosity,
isaac
Wednesday, September 12, 2007
smooth beauracracy?
as you know if you've been in touch lately, i have been suffering some extreme pain caused by a tumor located on my spine. apparently the tumor is compressing a vertabrae which has pulled nerve bundles out of alignment and has caused other pains to radiate out from the location of the tumor. All the oncologists and dr.s agree that radiation on this tumor will shrink or eliminate it, obviously eliminating the pain. (as compared to the nightmare of narcotic pain relief coupled with side effects and withdrawal symptoms which i have accidently put myself through twice). the down side is that radiation is roughly $1,000.00 per treatment and i will need anywhere from 10 - 20 treatments to effectively deal with this tumor.
i decided to try again with medi-caid, medical, etc. this time the process was smooth and quick and is already done and i have been approved! i actually begin radiation hopefully tomorrow! this means we will be staying in the santa rosa area during the treatments, possibly taking our weekends up in mt shasta.
i am still having some pretty bad days, but there are some good days included in the mix now as well, and i sure am enjoying those ones.
as always, my heart has been expanded to near bursting with the love and encouragement and support and sensitivity i have received from all of you, my friends. thank you again and again, we are all on this crazy ride together and we will all rock on when we have kicked this evil disease right in the balls.
i decided to try again with medi-caid, medical, etc. this time the process was smooth and quick and is already done and i have been approved! i actually begin radiation hopefully tomorrow! this means we will be staying in the santa rosa area during the treatments, possibly taking our weekends up in mt shasta.
i am still having some pretty bad days, but there are some good days included in the mix now as well, and i sure am enjoying those ones.
as always, my heart has been expanded to near bursting with the love and encouragement and support and sensitivity i have received from all of you, my friends. thank you again and again, we are all on this crazy ride together and we will all rock on when we have kicked this evil disease right in the balls.
Sunday, September 9, 2007
now we are cooking with oil ... HOLY OIL
after an incredible night of love and an outpouring of incredible generosity, i returned to my parents house (where we are temporarily staying in santa rosa ca) and had the worst shock of pain and torment i have yet gone through. the spinal tumor combined with some extreme stomach cramps (possibly side effect of the pain killers) and several other various aches and pains, escalated to a whole new intensity. things went okay during the day on friday but then again on friday night things went really sour. friday night ended up being so bad i had my first moment of weakness, of not being resolved to fight with everything i had. the pain was so extreme and so constant for so long i started to lose my desire to fight.
then ... saturday came with support from some of Gods finest. a dr. that goes to church with my parents has already volunteered a ton of time for consultations and research and comfort. he was able to make some key adjustments to the pain medications i am taking which helped some of the pain subside. then a precious family that have been long time friends came by to pray. we had an amazing time of standing together and declaring God's goodness and their encouragement and boldness in christ has actually changed some things in my spirit that i believe broke some of the power of this disease to torment me. it is already past the hour of my suffering from the 2 previous nights and i am reasonable comfortable and at peace. i actually believe that this is the first manifestation of the healing that God is working into me, and will just simply continue.
we are celebrating Gods work of purifying and strenghtening and restoring me. the difference in my body is monumental.
then ... saturday came with support from some of Gods finest. a dr. that goes to church with my parents has already volunteered a ton of time for consultations and research and comfort. he was able to make some key adjustments to the pain medications i am taking which helped some of the pain subside. then a precious family that have been long time friends came by to pray. we had an amazing time of standing together and declaring God's goodness and their encouragement and boldness in christ has actually changed some things in my spirit that i believe broke some of the power of this disease to torment me. it is already past the hour of my suffering from the 2 previous nights and i am reasonable comfortable and at peace. i actually believe that this is the first manifestation of the healing that God is working into me, and will just simply continue.
we are celebrating Gods work of purifying and strenghtening and restoring me. the difference in my body is monumental.
Saturday, September 1, 2007
reality check
so far most of my posts have been a reflection of the mindset that i have chosen as a method of fighting this disease. i choose a perspective that is full of hope and joy and dignity and strength. i am now also experiencing some of the downside of cancer, and as i am choosing not to focus my thoughts or energy on those things i have not really posted the whole story. so here it is, some of the nasty side (which for me just only really began about 3 weeks ago).
i am not 100% certain that this really is the source of the pain, but it is very likely that there is a tumor on my spine that is destroying the bone tissue. this is a condition that has become extremely painful. because of its location on my upper back there are many movements that trigger a shock of pain. recently that has progressed into a constant nagging pain that is most disruptive at night while i attempt sleep. this has driven me to begin the process of searching for the appropriate pain medication to bring me some relief so that i may continue to function as close to normal (for me) as possible. the one i am on right now is very effective at reducing the pain, and some of the side effects are pleasant. the other side effects however, have been their own little bit of struggle. What I would like to communicate is this, for those of you who pray please lift these issues up to our Father; bad constipation, occasionally crippling fatigue and mental slow down, periodic waves of flu like symptoms, and the craziest one of all, a one month supply is $360.00.
the other struggle that weighs heavily upon me is the loss of the ability to play with my boys the way we are used to playing. we have always been able to have wild time and play very aggressively and actively with each other and i currently experience intense pain when i just try to throw a ball! i am able to connect with my sons in other ways that are really significant, but there is something that we all really miss now that we cannot slap, body slam, titty twist and sucker punch each others ribs.
i appreciate those of you who have had suggestions regarding medical care, and i also appreciate those of you who have refrained from overloading me with information. when it comes to play time with the wild ones, i would welcome any and all suggestions and ideas about what me and the boys could do together that will satisfy their natural tendency towards crazy time, and allow me to stay boring and immobile. i haven't included naomi in this as her and i have never used slapping or body slamming in any of our play and she prefers the calmer modes of interacting (seems strange that i have a child like that at all). I am also looking for ways to create awesome significant memories for my babies as they are struggling with the torment of a sick daddy and their fear of losing me. so shoot me any ideas you have or things that you have done that might create lasting fond memories.
bless all y'all
i am not 100% certain that this really is the source of the pain, but it is very likely that there is a tumor on my spine that is destroying the bone tissue. this is a condition that has become extremely painful. because of its location on my upper back there are many movements that trigger a shock of pain. recently that has progressed into a constant nagging pain that is most disruptive at night while i attempt sleep. this has driven me to begin the process of searching for the appropriate pain medication to bring me some relief so that i may continue to function as close to normal (for me) as possible. the one i am on right now is very effective at reducing the pain, and some of the side effects are pleasant. the other side effects however, have been their own little bit of struggle. What I would like to communicate is this, for those of you who pray please lift these issues up to our Father; bad constipation, occasionally crippling fatigue and mental slow down, periodic waves of flu like symptoms, and the craziest one of all, a one month supply is $360.00.
the other struggle that weighs heavily upon me is the loss of the ability to play with my boys the way we are used to playing. we have always been able to have wild time and play very aggressively and actively with each other and i currently experience intense pain when i just try to throw a ball! i am able to connect with my sons in other ways that are really significant, but there is something that we all really miss now that we cannot slap, body slam, titty twist and sucker punch each others ribs.
i appreciate those of you who have had suggestions regarding medical care, and i also appreciate those of you who have refrained from overloading me with information. when it comes to play time with the wild ones, i would welcome any and all suggestions and ideas about what me and the boys could do together that will satisfy their natural tendency towards crazy time, and allow me to stay boring and immobile. i haven't included naomi in this as her and i have never used slapping or body slamming in any of our play and she prefers the calmer modes of interacting (seems strange that i have a child like that at all). I am also looking for ways to create awesome significant memories for my babies as they are struggling with the torment of a sick daddy and their fear of losing me. so shoot me any ideas you have or things that you have done that might create lasting fond memories.
bless all y'all
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