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
Saturday, September 1, 2007
on the road again!
we are heading back to california! we love texas more than any other place we've ever been, but there are some great things available to us in california for right now. i have not kept this blog as informative and up to date as i would have liked and this post will likely be the least coherent of them all, but i do want to let you all know the latest. the tumor on my spine has grown increasingly painful and has actually gotten severe enough to get me into some painkillers. the dose that is required to make the pain level tolerable is also enough to slow me down an awful lot, so i may not make a whole lot of sense in my communication (i'm just glad that i can't slur my words on a blog)
i cannot believe the overwhelming amount of support that my family has received from this great community. i can't imagine that any other individual fighting this beast of cancerr has had the kind of outpouring of generosity, ingenuity and (the drugs kind of ebb and flow, i have sat here at the keyboard for about 10 minutes after typing the word ingenuity and keep forgetting what i am trying to think of to communicate) ... i guess i'll just have to leave you hanging. as an example for those of you who have not personally been subjected to my most recent obsession, a dear friend in texas let me borrow his beautiful 2000 heritage springer softail harley for the week prior to our departure for california. on the day before our planned departure, i was starting to work on getting the bike back to him and he and his wife told me to figure out a way to take the scoot to california with us. i don't know how much all y'all (thats texan for referring to plural form of you) know about your average harley owner but thats kind of like saying "here, take my right leg and all of my joy with you to california. this example is just one of many giant acts of generosity and again and again i am filled with love and gratitude for our God who takes the plans of our enemy intended to destroy us and turns them to pure blessing.
in this season there are many wonderful people that i love dearly that are sending me there messages of love and hope. as my days lately seem to be a stumbling match between intense pain and bill and teds excellent pain meds i have not been returing very many calls. please forgive me and have grace, the majority of my energy and coherency has gone into pouring myself into the lives of my wife and babies (and honestly a little bit of harley time). i do love receiving your messages!
i am pretty sure there are a lot more details i should be providing but the keyboard has actually become incredibly blurry for now, so please pray without ceasing, send lots of money and love, and i hope to see YOU very soon.
i cannot believe the overwhelming amount of support that my family has received from this great community. i can't imagine that any other individual fighting this beast of cancerr has had the kind of outpouring of generosity, ingenuity and (the drugs kind of ebb and flow, i have sat here at the keyboard for about 10 minutes after typing the word ingenuity and keep forgetting what i am trying to think of to communicate) ... i guess i'll just have to leave you hanging. as an example for those of you who have not personally been subjected to my most recent obsession, a dear friend in texas let me borrow his beautiful 2000 heritage springer softail harley for the week prior to our departure for california. on the day before our planned departure, i was starting to work on getting the bike back to him and he and his wife told me to figure out a way to take the scoot to california with us. i don't know how much all y'all (thats texan for referring to plural form of you) know about your average harley owner but thats kind of like saying "here, take my right leg and all of my joy with you to california. this example is just one of many giant acts of generosity and again and again i am filled with love and gratitude for our God who takes the plans of our enemy intended to destroy us and turns them to pure blessing.
in this season there are many wonderful people that i love dearly that are sending me there messages of love and hope. as my days lately seem to be a stumbling match between intense pain and bill and teds excellent pain meds i have not been returing very many calls. please forgive me and have grace, the majority of my energy and coherency has gone into pouring myself into the lives of my wife and babies (and honestly a little bit of harley time). i do love receiving your messages!
i am pretty sure there are a lot more details i should be providing but the keyboard has actually become incredibly blurry for now, so please pray without ceasing, send lots of money and love, and i hope to see YOU very soon.
Tuesday, August 21, 2007
fundraisers and such
several fundraisers occured this weekend in the texas area and an incredible $7,000.00 was raised. there is also an awesome event being planned for the santa rosa ca area on sept 6. for details on that please sign up for updates here, or call an information line at 707.237.5701.
we have also been blessed by another dear friend with the creation of an online travel site that will also generate some income for us. you can either simply book your flights and hotel accomodations there, or you can actually set up your own travel site as a part of my business and you and i both will receive commissions from business generated on your site! to book travel arrangements visit here or for more info on the business visit here.
i cannot express the magnitude of gratitude (copyright jesse jackson at some point i am sure) this lehr family has for all the incredible efforts going on to support us. there are some huge efforts requiring many hours of work and devotion, may God bless you tenfold for the gifts you have bestowed.
we have also been blessed by another dear friend with the creation of an online travel site that will also generate some income for us. you can either simply book your flights and hotel accomodations there, or you can actually set up your own travel site as a part of my business and you and i both will receive commissions from business generated on your site! to book travel arrangements visit here or for more info on the business visit here.
i cannot express the magnitude of gratitude (copyright jesse jackson at some point i am sure) this lehr family has for all the incredible efforts going on to support us. there are some huge efforts requiring many hours of work and devotion, may God bless you tenfold for the gifts you have bestowed.
Monday, August 20, 2007
holy crap
so much to update, so few brain cells devoted to remembering them all!
the conclusion of our california /tijuana trip was not quite as hopeful as we would have liked. my current diagnosis is extreme enough that even the alternative hospitals are talking about extended life expectancy rather than complete remission. they have experienced complete remission but it is the exception rather than the rule.
we returned to austin on thursday the 9th, and on friday the 10th, went through the needle biopsy which i highly recommend avoiding if at all possible. i left for georgia on saturday to spend a week at a conference regarding the spiritual and physical dynamics of healing and being whole. it was really good eye opening material, and i again have a great hope that i will be completely healed. the "for my life" conference at Be In Health ministries has recorded numerous miracle healings of many untreatable diseases including terminal cancer.
Right after the lest session of the conferenc i started experiencing some chest pain and shortness of breath. after the most exasperating time of dealing with emergency rooms in ga it was finally determined that i had a partially collapsed lung, along with a small amount of fluid and swelling of the lining of my lung and chest wall. things could have been worse, but it seems that some of the physically painful implications of the cancer may be starting to manifest.
it also appears that the original diagnosis i received was incomplete. believe it or not, there are more tumors than i thought my oncologist discussed. there are 5 or 6 in my lungs with at least one tumor in each of the lobes of the lungs, and 4 or 5 tumors in my liver, as well as the one on my spine. we are standing strong against fear and doubt, but it is a very hard position to maintain at times. we are going to head back up to shasta in a week or so to stay until the funds for tijuana are available.
i think that is all for now, thank you for tracking with the lehr family. i desperately seek your continued prayer and financial support, and look forward with great hope to having a good report of God's power soon.
the conclusion of our california /tijuana trip was not quite as hopeful as we would have liked. my current diagnosis is extreme enough that even the alternative hospitals are talking about extended life expectancy rather than complete remission. they have experienced complete remission but it is the exception rather than the rule.
we returned to austin on thursday the 9th, and on friday the 10th, went through the needle biopsy which i highly recommend avoiding if at all possible. i left for georgia on saturday to spend a week at a conference regarding the spiritual and physical dynamics of healing and being whole. it was really good eye opening material, and i again have a great hope that i will be completely healed. the "for my life" conference at Be In Health ministries has recorded numerous miracle healings of many untreatable diseases including terminal cancer.
Right after the lest session of the conferenc i started experiencing some chest pain and shortness of breath. after the most exasperating time of dealing with emergency rooms in ga it was finally determined that i had a partially collapsed lung, along with a small amount of fluid and swelling of the lining of my lung and chest wall. things could have been worse, but it seems that some of the physically painful implications of the cancer may be starting to manifest.
it also appears that the original diagnosis i received was incomplete. believe it or not, there are more tumors than i thought my oncologist discussed. there are 5 or 6 in my lungs with at least one tumor in each of the lobes of the lungs, and 4 or 5 tumors in my liver, as well as the one on my spine. we are standing strong against fear and doubt, but it is a very hard position to maintain at times. we are going to head back up to shasta in a week or so to stay until the funds for tijuana are available.
i think that is all for now, thank you for tracking with the lehr family. i desperately seek your continued prayer and financial support, and look forward with great hope to having a good report of God's power soon.
Monday, August 6, 2007
on the road
johnna and i spent this last weekend in a church in northern CA that has experienced untreatable terminal cancer patients being healed. it has been an extraordinary time of building hope, and we feel equipped to keep pressing on in our journey. i will have an MRI and a needle biopsy this coming friday, and i wouldn't be shocked to hear the report that the tumors are mysteriously gone! we were supposed to be heading to tijuana today, but our flight was overbooked so we are going tomorrow. there are 2 alternative hospitals there that we will be visiting before we make our final decision regarding which to seek care from, and following our trip we should have an updated cost analysis. We hope to have the funding for the treatment as soon as possible, so be aware of the fundraisers happening in your area. there is a cut-a-thon in austin on august 19 and something fun and exciting with a celebrity chef in santa rosa on september 6th.
as things just keep looking worse and worse, i am glad to have already experienced the generosity and support from so many of you. i thank you for standing with me, and know before i ask that you will continue to stand and even stand stronger for me and my family as we face this growing tyrant.
as things just keep looking worse and worse, i am glad to have already experienced the generosity and support from so many of you. i thank you for standing with me, and know before i ask that you will continue to stand and even stand stronger for me and my family as we face this growing tyrant.
Wednesday, August 1, 2007
bad news
... ... well ... i am in bad shape. after a brief conversation on monday with my oncologist, i was able to sit down with him this morning and get the details. the spot in my lung from march has grown quickly, there are several other spots in the same lobe of the same lung, there are 2 spots on my liver and possibly a spot on my spine. The spine mass may be an injury that i incurred as part of the awkward stance i adopted to promote faster skin healing during my radiation treatments. the dr. was very specific today that the only option left is chemotherapy. surgeries are no longer an option when the disease is this advanced, and my lungs would not be able to withstand the radiation necessary to eliminate the tumor. The dr. stated to me and my wife today that this is going to kill me, that i am going to die from this. there may be some experimental options that may prolong my survival, but there are no treatments that will save me.
i obviously will continue to stand in the belief that i have a long life ahead of me, that i will enjoy my childrens weddings and hold my grandchildren. my hope is in Christ alone. we are also going to be wise and pursue every single stinking snake oil and miracle healer we can find, and i will create extraordinary memories for my wife and children.
i do not accept the death sentence today
i obviously will continue to stand in the belief that i have a long life ahead of me, that i will enjoy my childrens weddings and hold my grandchildren. my hope is in Christ alone. we are also going to be wise and pursue every single stinking snake oil and miracle healer we can find, and i will create extraordinary memories for my wife and children.
i do not accept the death sentence today
Monday, July 30, 2007
lung butter
well... ...
talked to my oncologist today, remember the little tiny spot in my lung that was too small to do anything with? It has grown (a lot) and has several new neighbors along with it. the spot was 2 mm in march and is now 2 cm, and there are several other new spots as well.
my current coverage through a county aid program expires on august 10th and will not be renewable, so my oncologist is scrambling to get me in for a needle biopsy. this sounds like a normal fun thing to try, i will have a needle inserted all the way into my lung where the tumor is and they will remove a small portion of the tumor for a biopsy. then we will know for sure what it is .... ... could it be anything other than more of the same cancer that has shown up 6 times elsewhere in my body? i honestly don't know, but i can't imagine anything else at this point.
i just wonder at this point ... what would sponge bob do?
talked to my oncologist today, remember the little tiny spot in my lung that was too small to do anything with? It has grown (a lot) and has several new neighbors along with it. the spot was 2 mm in march and is now 2 cm, and there are several other new spots as well.
my current coverage through a county aid program expires on august 10th and will not be renewable, so my oncologist is scrambling to get me in for a needle biopsy. this sounds like a normal fun thing to try, i will have a needle inserted all the way into my lung where the tumor is and they will remove a small portion of the tumor for a biopsy. then we will know for sure what it is .... ... could it be anything other than more of the same cancer that has shown up 6 times elsewhere in my body? i honestly don't know, but i can't imagine anything else at this point.
i just wonder at this point ... what would sponge bob do?
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