Save Jim's Voice (Maybe)!
Donation protected
A New Hope?
The Short Version: I can get a type of treatment for my recurrent tongue cancer at the University of Chicago's Center for Advanced Medicine ("FHX" chemo-radiation) that I can't get close to home. This intensive treatment is not only potentially life-saving, but will leave me with more tongue function - speech, song, eating, drinking - than the locally preferred option of radical surgery.
I would like to continue to sing, talk, eat and drink for many years. And insurance will cover much of the treatment itself, but the plan basically involves me moving to Chicago for three months while my family mostly remains behind, and I'll have transportation, lodging and caregiver expenses. I'd like your help defraying those.
The Long Version: (See Update Below.) If you know me offline or via the internet, you probably know I'm dealing with a recurrence of the tongue cancer that was first diagnosed in 2012 and came back this winter. The locally recommended treatment plan involves removing half my tongue, then a course of radiation (and maybe chemo depending on TDB lymph-node involvement. This will involve a feeding tube - MAYBE temporary - and a possible tracheotomy - MAYBE temporary - and permanent, drastic losses in functionality related to speech, swallowing and - this part really hurts - singing.
There's one other possibility. Twitter friend Scott points me to the program at the University of Chicago, where they emphasize a minimally invasive protocol based on radiation and chemo first, with claimed excellent survival rates and high retained functionality even for advanced oral cancers. (See, for instance, here: http://www.uchospitals.edu/specialties/cancer/patient-stories/grant-achatz.html.)
Maybe it won't be applicable to my case, but I'd like to pursue it. That's where you, my generous friends, may choose to come in.
My family is currently on Medicaid, from Maryland, in the wake of my former employer ceasing to exist. The Chicago med schools don't take out-of-state Medicaid. So I would need to self-pay. In the longer term, this won't be an issue - I've taken a distribution from my 401K big enough to put us over the Medicaid threshhold so we'll be eligible to enroll in one of the exchange plans out-of-cycle. So if I end up going with Chicago for treatment, I should be able to get it covered.
But the wheels of the healthcare system grind slowly, and I need to have the initial consultations before my insurance gets changed. The basic consultation fee is $700 each. I will likely need two: with a medical oncologist and a radiation oncologist. Any tests they do in the office will be extra. What I'd like the funding effort to do is cover at least the basic consultation fees, so I've set the goal at $1,400. My family will stand the travel and lodging and are prepared to cover any additional test fees.
I am sorry to ask for this help because I know many people have it rough, and rougher than I. I'll commit myself to paying the value any donations forward in better circumstances. I will relish doing that, because I relish the idea of better circumstances!
I really want to keep singing. I want to finish these nice songs I wrote you. I really want to say all those snarky things that keep popping into my head. I really want to eat solid food. There's no guarantee this visit will preserve those things for me. But it is currently the only thing that MAY preserve those things for me.
UPDATE: Thanks to the generosity of early donors, we made the consultation trip and decided in favor of getting treatment at Chicago. Treatment has already begun - on 6/11 I had a selective neck dissection to biopsy my lymph nodes. I'm scheduled to start chemo-rad late this month. (It might slip to early July.)
Treatment works as follows: about a half-dozen two-week cycles that proceed through...
A) Five days of in-patient treatment including daily radiation and 24-hour chemical infusion
B) Nine outpatient days of no treatment. This allows partial recovery from the intense in-patient phase, so the patient can better bear the full course of treatment. (Some straight-line chemo patients never get to "the third bag" because the toxicity becomes too great. Hence Chicago's built-in recovery phase. Come in for an outpatient visit once for monitoring.
C) Repeat.
The tricky part, logistically and financially, is actually the outpatient phase. My doctors believe I'll be too debilitated to travel back and forth to Maryland between in-patient phases. There's discounted lodging available - via both the American Cancer Society and generous friends in the area - but those options are not medical facilities. I have to arrange my own caregiver services. Through July, that will be my wonderful son, T., who will be with me until it's time to go off to college. But from late August onward, I'll need help. That's what you'll be helping to pay for. :)
The Short Version: I can get a type of treatment for my recurrent tongue cancer at the University of Chicago's Center for Advanced Medicine ("FHX" chemo-radiation) that I can't get close to home. This intensive treatment is not only potentially life-saving, but will leave me with more tongue function - speech, song, eating, drinking - than the locally preferred option of radical surgery.
I would like to continue to sing, talk, eat and drink for many years. And insurance will cover much of the treatment itself, but the plan basically involves me moving to Chicago for three months while my family mostly remains behind, and I'll have transportation, lodging and caregiver expenses. I'd like your help defraying those.
The Long Version: (See Update Below.) If you know me offline or via the internet, you probably know I'm dealing with a recurrence of the tongue cancer that was first diagnosed in 2012 and came back this winter. The locally recommended treatment plan involves removing half my tongue, then a course of radiation (and maybe chemo depending on TDB lymph-node involvement. This will involve a feeding tube - MAYBE temporary - and a possible tracheotomy - MAYBE temporary - and permanent, drastic losses in functionality related to speech, swallowing and - this part really hurts - singing.
There's one other possibility. Twitter friend Scott points me to the program at the University of Chicago, where they emphasize a minimally invasive protocol based on radiation and chemo first, with claimed excellent survival rates and high retained functionality even for advanced oral cancers. (See, for instance, here: http://www.uchospitals.edu/specialties/cancer/patient-stories/grant-achatz.html.)
Maybe it won't be applicable to my case, but I'd like to pursue it. That's where you, my generous friends, may choose to come in.
My family is currently on Medicaid, from Maryland, in the wake of my former employer ceasing to exist. The Chicago med schools don't take out-of-state Medicaid. So I would need to self-pay. In the longer term, this won't be an issue - I've taken a distribution from my 401K big enough to put us over the Medicaid threshhold so we'll be eligible to enroll in one of the exchange plans out-of-cycle. So if I end up going with Chicago for treatment, I should be able to get it covered.
But the wheels of the healthcare system grind slowly, and I need to have the initial consultations before my insurance gets changed. The basic consultation fee is $700 each. I will likely need two: with a medical oncologist and a radiation oncologist. Any tests they do in the office will be extra. What I'd like the funding effort to do is cover at least the basic consultation fees, so I've set the goal at $1,400. My family will stand the travel and lodging and are prepared to cover any additional test fees.
I am sorry to ask for this help because I know many people have it rough, and rougher than I. I'll commit myself to paying the value any donations forward in better circumstances. I will relish doing that, because I relish the idea of better circumstances!
I really want to keep singing. I want to finish these nice songs I wrote you. I really want to say all those snarky things that keep popping into my head. I really want to eat solid food. There's no guarantee this visit will preserve those things for me. But it is currently the only thing that MAY preserve those things for me.
UPDATE: Thanks to the generosity of early donors, we made the consultation trip and decided in favor of getting treatment at Chicago. Treatment has already begun - on 6/11 I had a selective neck dissection to biopsy my lymph nodes. I'm scheduled to start chemo-rad late this month. (It might slip to early July.)
Treatment works as follows: about a half-dozen two-week cycles that proceed through...
A) Five days of in-patient treatment including daily radiation and 24-hour chemical infusion
B) Nine outpatient days of no treatment. This allows partial recovery from the intense in-patient phase, so the patient can better bear the full course of treatment. (Some straight-line chemo patients never get to "the third bag" because the toxicity becomes too great. Hence Chicago's built-in recovery phase. Come in for an outpatient visit once for monitoring.
C) Repeat.
The tricky part, logistically and financially, is actually the outpatient phase. My doctors believe I'll be too debilitated to travel back and forth to Maryland between in-patient phases. There's discounted lodging available - via both the American Cancer Society and generous friends in the area - but those options are not medical facilities. I have to arrange my own caregiver services. Through July, that will be my wonderful son, T., who will be with me until it's time to go off to college. But from late August onward, I'll need help. That's what you'll be helping to pay for. :)
Organizer
Jim Henley
Organizer
