CONTACTS 

SUBJECTS
Health Care Millie Story Inspirational Overcome Resistance Against T

6303 -
6303 -    ..
6304 - Summary/Objective
6305 -
630501 - Follow up
630502 -
630503 -
630504 -
630506 -  ..
6306 -
6307 -
6308 - Progress
6309 -
630901 - Millie received a copy of a letter that Kim sent to a great many
630902 - people with a link to an inspirational movie clip. ref SDS 0 LK4O
630904 -  ..
630905 - Millie recently started treatment ordered by Kaiser and provided at
630906 - UCSF to recover from her 8th relapse of cancer, after being told for 4
630907 - weeks that UCSF and Kaiser would not approve treatment prescribed by
630908 - UCSF.  The complex story assisting Millie's medical team over the past
630909 - 6 months to implement the insurance agreement for Kaiser to provide
630910 - standard of care could inspire doctors and patients searching for
630911 - effective solutions.
630913 -  ..
630914 - Millie sent the following letter replying to Kim...
630915 -
630916 -    1.  Subject: Words to live by - everybody's on board
630917 -        Date: Tue, 30 Jun 2009 12:50:05 -0700
630925 -         ..
630926 -    2.  Your inspirational email on Saturday, came just in time.  The
630927 -        past 6 months I have been pushing a "big rock up a steep hill."
630928 -        Getting encouragement in your letter today helps a lot.
630930 -         ..
630931 -    3.  In January my cancer seemed to explode [because 6 years of
630932 -        treatment exhausted all protocols for stage IV cancer; this
630933 -        required innovation to treat "stage V" cancer].  Busy doctors
630934 -        combined with the usual mistakes [see patient history on 040416
630935 -        1045. ref SDS 1 SK50] delayed treatment beyond danger to
630936 -        emergency mode.  Finally got through that to start treatment in
630937 -        mid-February, but it was no picnic.
630939 -         ..
630940 -    4.  My doctor said in February that I [need treatment for cancer as
630941 -        a "chronic disease," reported on 090213 1140. ref SDS 4 GC6N
630942 -        otherwise I] have less than a year to live, ref SDS 4 9L7N],
630943 -        and offered Hospice rather than treatment, ref SDS 4 VW63,
630944 -        because Kaiser evidently feels my account is "over budget."  He
630945 -        didn't say it that way, but cited a fable about a genius in
630946 -        India who invented chess, and was rewarded by the emperor; but,
630947 -        the emperor later felt he made a "bad deal," and so stopped
630948 -        payment. ref SDS 4 4N5K
630950 -                ..
630951 -               [On 090701 0720 Kim cites Millie's strength and courage
630952 -               focusing on proactive planning to provide medical
630953 -               treatment in time to be effective enabling a quality of
630954 -               life that avoids pain, suffering, and decline, which
630955 -               otherwise requires Hospice care to die comfortably.
630956 -               ref SDS 17 IY5H
630958 -                ..
630959 -               [On 090706 1447 Millie received a letter from Ross
630960 -               encouraging Millie's inspirational, competitive drive to
630961 -               be a "winner" helping Kaiser and UCSF overcome
630962 -               resistance to using good management required to treat
630963 -               Millie's "stage V" cancer as a chronic disease,
630964 -               ref SDS 18 IY5H
630966 -                ..
630967 -               [On 091130 1106 Millie's letter to Laura who ended
630968 -               treatment and entered Hospice, explains Millie's
630969 -               difficulties after June 2009 to implement primary care
630970 -               doctor's order to treatment Millie's cancer as a chronic
630971 -               disease. ref SDS 20 NK6V
630972 -
630978 -                ..
630979 -               [On 100204 1723 Millie responded to her grandaughter, on
630980 -               objectives to inspire persistence, ingenuity, courage,
630981 -               and dignity. ref SDS 23 SX6I  Millie's amazing patient
630982 -               history provides compelling leadership for the medical
630983 -               team at Kaiser and UCSF to overcome resistance against
630984 -               using good management in order to get treatment for
630985 -               "stage V" cancer as a "chronic disease." ref SDS 23 XN5R
630986 -               Stephanie's writing skills can help her the way that
630987 -               writing a daily diary helps Millie's medical team.
630988 -               ref SDS 23 XN5W
630990 -                ..
630991 -               [On 100206 1533 Benilda inspired by Millie's leadership
630992 -               helping Kaiser and UCSF overcome resistance to treating
630993 -               Millie's "stage V" cancer as a "chronic disease."
630994 -               ref SDS 24 HX55
630996 -         ..
630997 -    5.  With inspiration from family and friends, I decided to try
630998 -        treatment for the 7th relapse, rather than Hospice [see meeting
630999 -        with Doctor Hsu in UCSF Radiation Oncology Department planning
631000 -        treatment with radiation and hyperthermia, ref SDS 3 EY5F].
631002 -         ..
631003 -    6.  In March and April treatment side effects seemed worse than
631004 -        cancer.  So, when cancer returned for an 8th time, inspiration
631005 -        to work for recovery waned.  In mid-May, Doctor Rugo, world
631006 -        renowned oncologist at UCSF...
631007 -
631008 -              http://cancer.ucsf.edu/people/rugo_hope.php
631009 -
631010 -        ...was uncharacteristically discouraged, saying Kaiser would
631011 -        never get "on board" with the new plan to recover from an 8th
631012 -        relapse [reported in meeting at UCSF on 090514 0830.
631013 -        ref SDS 5 3F82
631015 -         ..
631016 -    7.  The next day, I was encouraged by my doctor at Kaiser, who said
631017 -        he would "go to bat for me," ref SDS 6 655R, because he had
631018 -        been inspired by a television documentary produced by Michael
631019 -        Moore.  He described Moore thundering against patients
631020 -        ill-treated by a greedy, inefficient health care system.
631021 -        ref SDS 6 659O  The doctor explained the only treatment he has
631022 -        left for me at Kaiser is Gemzar, and he would get in trouble
631023 -        prescribing Gemzar for my patient profile. ref SDS 6 658J  He
631024 -        was near tears explaining other patients pleading to him for
631025 -        treatments Kaiser does not have due to complex government
631026 -        regulations. ref SDS 6 657K  We explained how to solve the
631027 -        problem by implementing Kaiser's insurance agreement.  My
631028 -        doctor asked Rod to prepare a draft appeal for him to
631029 -        personally present grounds Kaiser can approve Doctor Rugo's
631030 -        plan. ref SDS 6 655Y  I was ecstatic, and thought of your high
631031 -        regard for Moore's work, and couldn't wait to tell Doctor Rugo
631032 -        she was wrong about Kaiser.
631034 -         ..
631035 -    8.  Unfortunately, Doctor Rugo proved correct.  The primary care
631036 -        doctor on "my medical team" suddenly realized he is also on
631037 -        "Kaiser's team," and Kaiser has "bigger hitters."  Instead of
631038 -        submitting a claim to Kaiser on approving my treatment, he sent
631039 -        some fancy language to me obviously prepared by Kaiser's "smart
631040 -        boys in the back room."  I was crushed when my primary care
631041 -        doctor not only refused to get "on board" for the UCSF
631042 -        treatment plan [reported on 090519, ref SDS 7 5K7H, but Kaiser
631043 -        wouldn't prescribe anything [reported on 090529 1109.
631044 -        ref SDS 8 0N3O
631046 -         ..
631047 -    9.  Doctor Jekyll meet Mr. Hyde!!
631049 -         ..
631050 -   10.  Inspiration declined, as cancer spread [reported on 090531
631051 -        1544. ref SDS 9 IH4Q].  We were really scrambling to get
631052 -        something to live by [reported on 090531 1544. ref SDS 9 IH9S
631053 -        I won't go into all of the details, but we did not accept
631054 -        Kaiser's refusal to prescribe treatment at the 11th hour and
631055 -        with time running out on ability to recover. ref SDS 9 IH4X
631057 -         ..
631058 -   11.  After weeks of back and forth, I was relieved, when my doctor
631059 -        finally prescribed alternate treatment [reported on 090601
631060 -        0818. ref SDS 10 PQ7V], but still concerned this was Gemzar,
631061 -        which the doctor had earlier said would likely not be effective
631062 -        for me [reported on 090515, ref SDS 6 658J].
631064 -         ..
631065 -   12.  With reservations, I did the tests and was ready to go.  Then
631066 -        Queenie called from the Kaiser Oncology Pharmacy.  She talked
631067 -        for about 40 minutes on procedures and side effects.  Queenie
631068 -        scheduled treament to start with Gemzar on June 11th [reported
631069 -        on 090603 1524]. ref SDS 11 6W9H  At the end of the call, Rod
631070 -        asked for a letter confirming Kaiser's guidance.  Queenie said
631071 -        Kaiser never sends letters to patients, because it is faster
631072 -        and easier to call.  She noted that in her 5-years calling
631073 -        Kaiser customers like today, she has never before been asked
631074 -        for a letter confirming understandings on complex medical
631075 -        issues.  So, my spirits were lifted knowing everything was set
631076 -        to start treatment.
631078 -         ..
631079 -   13.  A few days later, just before treatment was to start, guess
631080 -        what?  I got a letter from Queenie at Kaiser!  She provided a
631081 -        link to a website which she said confirmed everything discussed
631082 -        in her call. ref SDS 12 V37O  Normally, I don't open links, and
631083 -        since I had a long talk for about 40 minutes getting the scoop,
631084 -        it seemed unnecessary to spend more time.  But it was a slow
631085 -        day.  So, what the heck, I clicked the link.
631087 -         ..
631088 -   14.  Actually, there was nothing in Kaiser's guidance on Gemzar that
631089 -        related to anything Queenie said in the call.
631091 -         ..
631092 -   15.  The first thing that jumped out was that the Gemzar treatment
631093 -        Kaiser prescribed should be used with "extreme caution" after
631094 -        getting radiation. ref SDS 12 V34K  Enlightenment continued
631095 -        saying to avoid Gemzar, when taking blood thinners. ref SDS 12
631096 -        793G  Another problem was that Gemzar, like all "gold standard"
631097 -        chemotherapy agents, suppresses blood counts. ref SDS 12 0G49
631099 -         ..
631100 -   16.  I wrote to my doctor asking for a letter from Kaiser saying the
631101 -        treatment would be safe for my patient profile, because I just
631102 -        had 4 weeks of intense radiation in February and March, and the
631103 -        attending physician said that effects would last for months.
631104 -        What "extreme caution" would Kaiser take, as called out in
631105 -        their published guidance? [reported on 090605 2215. ref SDS 13
631106 -        LF7S].  Since I am on blood thinners for life, what will Kaiser
631107 -        do to overcome their advice to avoid Gemzar treatment?  Since
631108 -        my blood counts have been permanently weakened by prior cancer
631109 -        treatments, how will counts be maintained to enable treatment
631110 -        to be effective, since standard of care requires changing
631111 -        treatments, what will Kaiser prescribe to comply? [also
631112 -        presented to Millie's doctor in the letter to Kaiser on,
631113 -        ref SDS 13 LE5W
631115 -         ..
631116 -   17.  I hoped my doctor would at last see the light, and make the
631117 -        referral for treatment at UCSF "targeted" to may patient
631118 -        profile.  Instead, he proposed strapping me down and giving
631119 -        blood transfusions in order for Kaiser to legally give me a
631120 -        treatment, which he had already said probably would not work.
631121 -        Essentially, Kaiser was refusing care by offering draconian
631122 -        treatment [reported on 090609 1427. ref SDS 14 VV92]
631124 -         ..
631125 -   18.  Oh yes, Kaiser offered Hospice again as the only alternative.
631126 -        [also reported on 090609 1427. ref SDS 14 VV44 ref SDS 14
631127 -        VV44].
631128 -
631129 -               [On 091125 2203 Millie writes to Laura on ending 4 years
631130 -               of treatment living with IBC (which Millie has had for 8
631131 -               years), and entering Hospice; Millie is inspired by
631132 -               Laura always upbeat and proactive in her care and her
631133 -               life.  She is a wonderful woman; bright, articulate in
631134 -               conversation and correspondence, funny, and full of
631135 -               energy and ideas; a great inspiration for courage, hope,
631136 -               and dignity.  We shared laughs and cries facing life
631137 -               with cancer.  Laura was fortunate her mom was there to
631138 -               help fight unending battles with her work situation,
631139 -               insurance issues, and complex treatments. ref SDS 19
631140 -               9C6W
631142 -                ..
631143 -               [On 091130 1106 Millie's letter to Laura, who ended
631144 -               treatment and entered Hospice, explains Millie's
631145 -               difficulties after June 2009 to implement primary care
631146 -               doctor's order treating Millie's cancer as a chronic
631147 -               disease. ref SDS 20 NK6V
631149 -                ..
631150 -               [On 100106 0301 Millie received notice that Laura died.
631151 -               ref SDS 21 LP5I
631153 -         ..
631154 -   19.  Long story short, I was discouraged.
631156 -         ..
631157 -   20.  A week later, I got word from a giddy Doctor Rugo that suddenly
631158 -        "everybody is on board" for my treatment at UCSF [reported on
631159 -        090616 1245. ref SDS 16 D647], which does not have draconian
631160 -        side effects, and is "targeted" to my patient profile, and so
631161 -        has a chance of being effective.
631163 -         ..
631164 -   21.  Whew!  Talk about "words to live by."
631166 -         ..
631167 -   22.  Now I am on this new treatment with fingers crossed.  Won't
631168 -        know if it really works for another few weeks.  I feel better
631169 -        though just by feeling normal, rather than lousy and depleted,
631170 -        which occurs with Gemzar chemotherapy that Kaiser prescribed.
631171 -        I won't explain why Kaiser was reduced to refusing treatment,
631172 -        except to note it all comes down to money [reviewed on 070927,
631173 -        ref SDS 2 OW6P].  Paradoxically, the treatment at UCSF is much
631174 -        less expensive than what Kaiser would have paid for Gemzar.
631175 -        Why Kaiser took this position, and how it was turned around is
631176 -        a lot of boring details [reported on 090610 2213. ref SDS 15
631177 -        WY4U], which will compound by orders of magnitude, if "big time
631178 -        medicine" gets bigger under proposals floating around town in
631179 -        the capitol.
631180 -
631181 -               [On 091130 1106 Millie's letter to Laura, who ended
631182 -               treatment and entered Hospice, explains Millie's
631183 -               difficulties after June 2009 to implement primary care
631184 -               doctor's order treating Millie's cancer as a chronic
631185 -               disease. ref SDS 20 NK6V
631187 -                ..
631188 -               [On 100106 0301 Millie received notice that Laura died.
631189 -               ref SDS 21 LP5I
631191 -         ..
631192 -   23.  I pause today recounting history, because you, and Pam and
631193 -        others have been a constant inspiration with visits, calls,
631194 -        trips, going to the movies and such.  Perhaps you will in turn
631195 -        be inspired that seemingly insurmountable difficulties can be
631196 -        resolved, even when the "other team has bigger hitters." Please
631197 -        feel free to share this experience with others who may one day
631198 -        suddenly be told that a "wise man in India invented chess..."
631199 -        but the Emporer ran out of money to pay for the work! [related
631200 -        by Doctor Johnson at Kaiser in Walnut Creek, CA on 090213 1140.
631201 -        ref SDS 4 4N5K].
631202 -
631209 -
631210 -
631211 - ***************************
631213 -  ..
631214 - Copy of letter Millie received from Kim says...
631215 -
631216 -    1.  June 27, 2009 0923
631218 -        Subject:  Words to live by
631220 -         ..
631221 -    2.  Hi,
631222 -
631223 -        I found this to be pretty inspirational.
631225 -         ..
631226 -    3.  Please enjoy but don't fret if you don't pass it on or discard
631227 -        after 96 hours.  It is only intended to be a positive
631228 -        statement.
631229 -
631233 -
631234 -
631235 -
631236 -
631237 -
631238 -
631239 -
631240 -
6313 -