more coverage headaches

rawr! the eternal battle dealing with bureaucracy just keeps on going! My oncologist tried to schedule a ct scan last week, but was informed that he is no longer authorized to refer me for treatments and scans. i used up over half of my cell plans minutes trying to figure out what i had to do in order to get the scan done. i was told that i had to have a dr appointment at one of the dirty ghetto clinics in order to establish coverage. the next available appointment is september 12. the coverage that i have been provided expires on august 10, and will not be renewed unless my homes are sold. after waiting on hold and sitting in several offices for hours, i snapped and decided i was gong to just go make a scene at the state capitol building. i figured "what the heck, worse case scenario, i'll get myself arrested and they probably can't deny health services to inmates." i have never been to the capitol building, so i just showed up in the lobby and started asking random people what they would do. i was eventually sent to my state senators office where i found an individual whose position is constituent services. this delightful woman spent an hour and a half making calls and turning the screws until she got in touch with the right guy at the right time. we were promised a return call that same day, so i left and awaited his call. by the time he called i already had an appointment for the next day at the dirty clinic in the bad part of town. i went to the clinic and was helped by a handful of very helpful concerned individuals, however, they apparently do not have the same access to the hospital scheduling and it may take several weeks before i can get the scan done, and that is assuming that the family dr i saw agrees with my oncologist that the scans are necessary. it sure seems ridiculous to have a family clinic dr oversee the recommendations of a oncology specialist with 15 years experience treating cancer, especially since my oncologist was able to get my last ct scan scheduled in 2 days. i guess it won't serve any purpose to try to find reasonable rational thought in the bureaucracy.

i think i am close to really being at the end of my rope, and i mean that in a good "tyler durden" kind of way (reference fight club). we are actively laying down all of our previous hopes dreams desires wants assumptions and expectations, and looking at life with some pretty brutally honest admissions. it's been really great to strip down to the bare essentials and allow new matured (hopefully) mindsights to govern our desires.

again, i cannot thank all of the genereous friends who have donated time, money, love and creativity to my family. there are several new fundraising efforts underway, my beauty school is doing a cut-a-thon in august and my friends band the black angels are planning a benefit show in september. if anyone knows of a local (tx) band that would want to play at the cut-a-thon, let me know.

love you all!

not alot of new medical information to update, i have 10 more treatments and then i'll be done with the radiation. hopefully, i will be able to complete them without interruption and be done in a couple more weeks. i have limited mobility from the surgery and skin burn and some of the other indirect effects of keeping my arm dry and elevated. it looks like i will need to undergo some physical therapy in order to regain full functional use of my right arm. we may be going to georgia for a week following radiation for some really alternative medicine, and then its a waiting game. waiting for our property to sell in an effort to pay for further treatments.



this season is providing an excellent object lesson in "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." i am overwhelmed with what i am facing, and the prices my wife and children are paying. i have exhausted my own strength and wisdom and resource, and i can honestly claim that i am grateful for the perseverance that is being developed. i am looking forward to not lacking anything! i appreciate everyones continued prayers and support and the fundraisers and other creative gifts that we have received.

radiation update

i have undergone 14 of 28 initial radiation treatments, and have developed a radiation burn that is significant enough to temporarily delay further treatments. i have what could roughly be compared to a 2nd degree sunburn on my right shoulder, chest, back and armpit. i am also told that in order to get back on track with the treatments i need to rest and stay cool and dry. As you may imagine i would prefer a 3rd degree burn and be active rather than figure out how to rest every day. Sounds like perhaps i am still not quite humbled enough!

thanks again to every one who is blessing us with their prayers and donations. i am still working on developing a gauge of what has been received and what our total financial need will likely amount to, some of the delay is due to the uncertainty of treatment costs, and some is still my hesitancy to make what feels like an outrageous request. i hope that doesn't mean more humbling is in order.

til next time

not much new but an update anyway

well, we are in the early stages of the radiation, and it's tolerable so far. fatigue and skin irritation are the only side effects, and my wife has been waiting for me to slow down for quite a while. the big concern at this point is the undefined mass in my lung. we'll be scheduling another ct scan soon and hopefully that will bring some bit of clarity.

a monster thank you to everyone who showed up for the fundraiser that was arranged by Don and Mattie McKinely, that was a huge gift and provision. There have been several other big contributers as well and I cannot express the enormity of my gratitude to you all. i will attempt to put together a gauge to keep track of our need and the amount raised and have that show up either on the blog or the love just is site.

until we meet again
isaac

radiation at last

after many stupid hoops that medicaid and travis county has set before me, i am able to begin radiation treatment. it will be daily for 4 - 6 weeks, and apparently will only feel like a bad sunburn, but may also cause a short term loss of use of my right arm. i guess thats why God made my left one so incredibly strong as well.

it has been quite a battle dealing with the beuracracy, it is hard to believe that i would have had no problems in receiving help if i had just been a bum and never tried to achieve anything in life, but because i still own a home (hopefully not for long) i don't qualify for any kind of assistance. i am sure regretting having carried health insurance for 12 years and then cancelling it in frustration one month before my diagnosis. that probably was not a wise choice ...

here is a copy of a message naomi (12 year old daughter) sent to her friends.

"my dad has cancer. we are going through some ruff patches likemoving to texas in a trailor, not knowing anyone or anthingthats gunna happen. its one of the scariest things knowing that my dad, the holder of this family, could die. i never expected something like this to happen. but we are a strong family and we can pull through. he is the most important thing in my life right now and im not gunna lose him. not here, not now."

life is a highway and i apparently want to ride it all night long

the Lehr family has moved!. here's the nice big old home ... ...

and the nice cozy new home!

There is nothing more intimate then moving six people, a dog, cat, 2 rats and a tarantula from the 2,100 square foot home on 1/4 acre into a 200 square foot home in a trailer park (complete with rusty weight lifting set in the neighbors site).

i have also learned some details that are new to us. my particular variety of cancer and its metastasis into my lymph system is considered a stage 4 cancer (out of 4 possible stages, 4 being the most serious). standard western medical treatment for all stage 4 cancer patients includes systemic treatment in addition to treatments specific to the area that the tumors presented themselves. my variety of cancer is extremely rare (probably 5 cases a year in which an MPNST metastasized into the lymph) and chemotherapy is the only established systemic treatment for MPNST. Sadly, Chemo has only shown a 15% success rate in reducing MPNST tumors, so we are pursuing the alternative treatment route. my diet has already completely changed (no coffee, beer, tobacco, red meat, processed food etc.) to primarily raw vegetables and nuts soaked in water for a day, as well as juicing (yech! beet juice must be some kind of dirty punishment for some unknown sin). I have lost 30 lbs (i wish i cared more about that!).

i am supposed to begin radiation treatment ASAP at this point, but that has been delayed due to coverage hassles. i just finished a major step in the right direction today, so hopefully i'll be able to start my daily dose of radiation to my right shoulder and armpit soon (if you know me well you know i am not kidding when i say i am kind of looking forward to that experience).

All things considered, i feel extremely fortunate to be living in this experience. I do believe that I am being processed and refined for a great purpose, and even larger than that, my family is being pressed down and shaken together in order that they may have a greater capacity to love and serve God and the people around them.

sorry updates have been few and far between, i hope to be able to provide more details more often for those who are interested.

a ginormous thank you to those who have made contributions to my family, we have been able to cover the living expenses for this month because of your generosity and i am honored, humbled and grateful to you for that.

love and gratitude

isaac