CONTACTS 

SUBJECTS
Cancer Recovery Decisions Millie's Progress Recovering from IBC

0403 -
0403 -    ..
0404 - Summary/Objective
0405 -
040501 - Follow up ref SDS 11 0000. ref SDS 10 0000.
040502 -
040503 - Patty has written several letters the past few weeks, and events have
040504 - prevented giving these matters attention.  Today, seem to be somewhat
040505 - caught up, so will try to respond.  Main points are that Patty has
040506 - graduated, or will be graduating to become a lay counselor minister
040507 - for her church.  There is also a report of medical issues, which are a
040508 - disappointment. ref SDS 0 3E7L
040510 -  ..
040511 - Submitted a letter to Patty congratulating her on graduating and
040512 - wishing her success in a new career. ref SDS 0 V66Y
040513 -
040514 -
040515 -
040516 -
040518 -  ..
0406 -
0407 -
0408 - Progress
0409 -
040901 - Patty sent an email on 040621 asking about Millie's progress,
040902 - following up the visit at Mother and Bob's place in Nipomo, reported
040903 - on 040613. ref SDS 11 P77I
040905 -  ..
040906 - Patty's letter said...
040907 -
040908 -    I emailed you last week regarding Millie's progress report from
040909 -    Monday's appointment - What were the results?
040911 -  ..
040912 - A letter went to Patty saying...
040913 -
040914 -    1.  From: Rod Welch [mailto:rodwelch@pacbell.net]
040915 -        Date: Monday, June 21, 2004 1:20 AM
040916 -        To: Pablito & Patty Utzurrum
040917 -        Subject: Millie Got Bad News, then Great News
040919 -         ..
040920 -    2.  Patty,
040922 -         ..
040923 -    3.  Responding to your letter today, asking about results of the
040924 -        meeting with the doctor last Monday, Millie has been diagnosed
040925 -        to have a rare, very serious condition, but seems to be
040926 -        responding to treatment.  She has has a big decision about
040927 -        whether to stay in a trial treatment program that seems to be
040928 -        working, or opt out and undergo standard treatment that has
040929 -        proven effective for her new condition.
040931 -         ..
040932 -    4.  On Monday, the doctor reported having received the letter on
040933 -        040610, asking for confirmation of the record on 040517.  The
040934 -        doctor maintained he was unable to open the link to the record,
040935 -        and so claimed ignorance about issues to be reviewed.  We
040936 -        therefore developed a list on a marking board in the office,
040937 -        and then reviewed the following issues...
040939 -             ..
040940 -        a.  The doctor confirmed that Millie has inflammatory breast
040941 -            cancer (IBC), and that this is a rare disease which
040942 -            afflicts less than 1% of patients who contract breast
040943 -            cancer.  The doctor further confirmed research on 040517
040944 -            showing that IBC spreads quickly, and so requires prompt
040945 -            aggressive treatment.
040947 -             ..
040948 -        b.  The doctor did not review longevity.  Research on 040517
040949 -            indicates longevity averages 18 months, and initial
040950 -            symptoms occurred 18 months ago, OA 030109. ref SDS 5 0T6N
040951 -            Since the patient is not only still standing, but is strong
040952 -            and very active, this matter was not discussed during the
040953 -            meeting.
040955 -             ..
040956 -        c.  The doctor made a clinical examination (meaning he looked
040957 -            with his eyes and felt with his hands, etc.) and concurred
040958 -            that lumps in Millie's neck have reduced significantly.
040959 -            The doctor further examined the breast and concurred that
040960 -            redness has reduced.  For some reason, the doctor did not
040961 -            examine the lump under the arm, but Mil, has indicated she
040962 -            feels this lump has also gotten smaller.  The doctor noted
040963 -            these changes indicate treatments seem to be effective, but
040964 -            there remains the issue that recurrence means metastasis --
040965 -            cancer can be occurring in many places, which have not yet
040966 -            reached a stage that can be detected with clinical
040967 -            examination.
040969 -             ..
040970 -        d.  We proposed taking another CA 15-3 blood test.  The doctor
040971 -            agreed.  This test indicates when treatment is failing.
040972 -            Presumably, if treatment is not failing, then it is
040973 -            succeeding.
040975 -             ..
040976 -        e.  The doctor designated Millie as stage 4 cancer.
040977 -            Previously, she was stage 2; however, when a patient is
040978 -            diagnosed with IBC under recurrence, as with Mil, then that
040979 -            patient is immediately designated at greatest risk, and
040980 -            given the most aggressive treatments available.
040982 -             ..
040983 -        f.  The doctor explained that Millie will face a big decision
040984 -            in 2 - 4 months.  If the current treatment in fact proves
040985 -            effective, then redness will be sufficiently reduced in the
040986 -            breast (meaning the disease is eliminated or reduced) to
040987 -            permit surgery to remove the breast (a mastectomy).  Millie
040988 -            will have to decide whether to follow the standard
040989 -            treatment for IBC, which requires surgery, and have more
040990 -            chemotherapy, then radiation; or, to continue with the
040991 -            current program participating in the Avastin trial, because
040992 -            if she elects to have a mastectomy, she will no longer
040993 -            qualify to continue in the trial, according to the doctor.
040995 -             ..
040996 -            One wonders, if a patient cannot elect to continue getting
040997 -            Avastin outside the trial, once it has proven effective.
040998 -            It is not clear why this is not a patient option, and why
040999 -            the trial would not benefit from results treating IBC,
041000 -            particularly if successful.  This needs to be explored
041001 -            further with the doctor, Genentech, and the protocol
041002 -            administrators.
041004 -             ..
041005 -        g.  For some reason, results of the bone scan were not reviewed
041006 -            on Monday.
041008 -             ..
041009 -        h.  The doctor insisted that treatment for stage 4 IBC is the
041010 -            same as treatment Millie is currently getting for
041011 -            recurrence of stage 2 breast cancer.  This boils down to
041012 -            whether Taxol and Avastin are comparable to the
041013 -            chemotherapy protocol for IBC. Research on 040517 showed
041014 -            different drugs.  This seems like an issue to have
041015 -            reviewed.
041017 -             ..
041018 -        i.  Doctor Johnson argued against resubmitting the case to the
041019 -            Tumor Board with an updated CA 15-3 report, and the new
041020 -            diagnosis of IBC, along with the bone scan results, which
041021 -            were not before the Board when it reviewed the case on
041022 -            040416.  The doctor wants to wait 2 - 4 months to get
041023 -            results of the current treatment regimen, and seemed to
041024 -            contend that submitting the case to the Tumor Board will
041025 -            only result in advice to maintain the current treatment.
041026 -            Assuming the Tumor Board is not a rubber stamp operation,
041027 -            if they endorse the current treatment plan, that will be
041028 -            helpful under point 8, and if not then taking timely action
041029 -            to make a prudent adjustment is essential under point 1.
041031 -             ..
041032 -        j.  The doctor noted that Kaiser collaborates with other
041033 -            hospitals to get additional guidance on difficult cases,
041034 -            but argued that, in this case, consulting with a Cancer
041035 -            Center will not provide additional expertise and experience
041036 -            to treat IBC, because, according to the doctor, the Kaiser
041037 -            Oncology Department in Walnut, CA treats more patients than
041038 -            are treated by Cancer Centers, and so has as much, or more,
041039 -            experience and expertise for treating IBC.
041041 -             ..
041042 -        k.  The doctor demurred on Millie getting a PET scan to
041043 -            determine the scope of the problem to solve, on the grounds
041044 -            that the Avastin protocol calls for CAT scan testing.
041045 -
041047 -             ..
041048 -        l.  The doctor advised that consistently low blood counts
041049 -            Millie has had over the past 2 months, and which have
041050 -            reduced the dosage of chemotherapy she is getting, occur
041051 -            because chemotherapy treatment prevents the bone marrow
041052 -            from replenishing the blood, and this is compounded in
041053 -            older people.  Since Millie needs chemotherapy and cannot
041054 -            change her age, there is not an immediate solution to low
041055 -            blood counts, except to prescribe a supplemental treatment
041056 -            to see if that helps.
041058 -         ..
041059 -    5.  Under this record, Millie has to decide whether to...
041061 -             ..
041062 -        a.  Demand a PET scan to verify the scope of the problem,
041063 -            because CAT scan testing has proven unreliable, and only
041064 -            biopsy and PET scan testing have been effective diagnosing
041065 -            her problems.  A key question is whether a PET scan can be
041066 -            performed to complement CAT scan tests in order to avoid
041067 -            conflicts with the Avastin protocol, which seemed to worry
041068 -            the doctor on Monday, under point 10.
041070 -             ..
041071 -        b.  Continue with the Avastin trial that seems to be working
041072 -            (see new information the next day on Tuesday), or opt for
041073 -            the standard treatment for IBC that precludes continuing in
041074 -            the Avastin trial.
041076 -             ..
041077 -        c.  Make a demand for immediate review by the Tumor Board,
041078 -            based on the actual record, which was not before the Board
041079 -            on 040416, in order to endorse the current treatment, or
041080 -            make adjustments to treat the new diagnosis in time to be
041081 -            effective.
041083 -             ..
041084 -        d.  Get additional review of the case by a Cancer Center to
041085 -            endorse the current treatment plan, or make adjustments,
041086 -            under point c,  including changing organizations for
041087 -            providing treatment to benefit from greater expertise and
041088 -            experience treating IBC, not-with-standing doctor Johnson's
041089 -            reporting under point 9.
041090 -
041092 -         ..
041093 -    6.  After meeting with Doctor Johnson, we went and got a blood test.
041095 -         ..
041096 -    7.  Tuesday.
041098 -         ..
041099 -    8.  The next day after meeting with Doctor Johnson on Monday,
041100 -        Millie had chemotherapy treatment on Tuesday.
041102 -         ..
041103 -    9.  Millie had good news.
041105 -         ..
041106 -   10.  CA 15-3 was expected to be about 85 or 90, based on rising
041107 -        numbers the past several months.  It would have been great to
041108 -        see a drop to about 75.  CA 15-3 actually dropped from 78 to
041109 -        55. This is the biggest drop we have seen in two years.  We
041110 -        were elated and surprised.  If this is not an anomaly, but
041111 -        rather is repeated next month, then Millie will drop down to
041112 -        the target range of 39, indicating effective treatment is
041113 -        occurring.
041115 -         ..
041116 -   11.  More good news.
041118 -         ..
041119 -   12.  As discussed with the Doctor on Monday (see para 11), Millie's
041120 -        blood counts have for two months been consistently below the
041121 -        target range, which has resulted in getting a reduced dosage of
041122 -        treatment, at a time when she has been diagnosed with IBC that
041123 -        seems to require aggressive treatment (higher dosage??).  She
041124 -        was scheduled to receive a supplemental medication prescribed
041125 -        to raise the blood counts (see again para 11), but since her
041126 -        counts were unexpectedly normal on Tuesday, the additional
041127 -        treatment was not given.  If this continues, it may signal
041128 -        Millie's system is growing stronger.
041130 -         ..
041131 -   13.  Even better news.
041133 -         ..
041134 -   14.  For 2 months, after treatments, Millie has been very tired,
041135 -        kind of wobbly, unable to drive, and she went to sleep almost
041136 -        immediately after getting home.  This past Tuesday, there was a
041137 -        marked change.  She wasn't wobbly, nor affected at all by
041138 -        treatments.  She drove home and didn't go to bed until her
041139 -        normal time of about 2100.  This may further indicate positive
041140 -        response to treatment.
041142 -         ..
041143 -   15.  Bottom line, Millie has been diagnosed with a very serious
041144 -        condition, which likely should have been treated earlier,
041145 -        beginning on or about 030109, making Millie a medical marvel
041146 -        (is it diet, exercise, unique genes??).  Despite this delay,
041147 -        treatment seems to be working.  This presents a difficult
041148 -        decision on whether to remain in the trial and not follow
041149 -        standard procedure that has proven effective for treating IBC,
041150 -        or opt out of the trial at a time when treatment seems to be
041151 -        making progress.
041153 -         ..
041154 -   16.  Mil can get input from the Tumor Board, from outside experts,
041155 -        like a Cancer Center, discuss things with her family and
041156 -        friends, and then decide what to do.
041158 -         ..
041159 -   17.  Rod,
041160 -
041161 -
041162 -
041163 -
0412 -

SUBJECTS
Links in Email Created with Windows Copy Link Function Demonstrated
Com Analyst Patty Has Potential Discovered Adding Links to Email Fas

0604 -
060501 -  ..
060502 - Com Analyst Potential Patty Learned to Use Links in Email
060503 - Patty Learned to Use Links in Email Com Analyst Potential
060504 - Links in Email Created with Windows Copy Link Function
060505 - Connected Record to Enlighten Takes a Few Seconds with Explicit Links
060506 -
060507 - Follow up ref SDS 11 LY5J.
060508 -
060509 - Letter to Patty concludes...
060510 -
060511 -   18.  Post Script...
060512 -
060513 -        The link in your letter the other day seemed to work fine.  You
060514 -        are on the way to becoming a communication analyst.
060516 -  ..
060517 - During the visit at Mother and Bob's place in Nipomo on 040613, Patty
060518 - asked how to create links in email, like she sees in letters on
060519 - Millie, ref SDS 11 LY5J, per example in the copy Patty received of the
060520 - letter to Robin on 040611. ref SDS 9 513W
060522 -  ..
060523 - Patty wrote a letter back saying...
060524 -
060525 -    1.  Subject: RE: Millie Got Bad News, then Great News
060526 -        Date: Mon, 21 Jun 2004 07:31:29 -0700
060530 -         ..
060531 -    2.  (Ha on the "communication analyst"!) Gosh, what a roller
060532 -        coaster - It would be hard to know what to do in that
060533 -        situation.  I would probably not be able to pursue all those
060534 -        details.  She is fortunate to have you to keep track of them,
060535 -        and to walk through this with her.  We will keep hoping for
060536 -        continued strength for both of you.
060538 -  ..
060539 - Patty's new career counseling people with difficult family issues,
060540 - reported below, ref SDS 0 5R7J, will provide a lot of opportunities
060541 - for tracking complex details in relation to objectives in a purpose
060542 - driven life.
060543 -
060544 -
060545 -
060546 -
060547 -
0606 -

SUBJECTS
Links in Email Created with Windows Copy Link Function Demonstrated
Com Analyst Patty Has Potential Discovered Adding Links to Email Fas
Graduating to Lay Counseling Ministry

0705 -
070601 -  ..
070602 - Graduating Lay Counseling Ministry
070603 - Career Change Focus on Counseling People to Achieve Purposeful Life
070604 -
070605 - Follow up ref SDS 11 286L.
070606 -
070607 - Patty continues in her letter on 040621....
070608 -
070609 -    3.  I have my interview for the Lay Counseling Ministry today from
070610 -        3p - 5p. We'll see if my shady past can be of use to someone in
070611 -        need!
070613 -  ..
070614 - Patty reports progress on the counseling assignment she plans to
070615 - pursue, discussed on 040613. ref SDS 11 286L
070617 -  ..
070618 - Received another letter from Patty....
070619 -
070624 -         ..
070625 -        Subject: I'm Graduating!
070626 -        Date: Sat, 17 Jul 2004 13:01:52 -0700
070628 -         ..
070629 -    2.  Just an Fyi that I am graduating from my Church Counseling
070630 -        Training on Wednesday Aug 4.  Ceremony is in Tent 3 @
070631 -        Saddleback, 7pm - they are catering dinner for everyone so if
070632 -        you can come to support me and would like to join for dinner I
070633 -        need to RSVP by Thursday July 22nd.
070635 -         ..
070636 -    3.  Would love to have you there with me,
070638 -         ..
070639 -    4.  Patty
070641 -  ..
070642 - Great news Patty graduating to become a Lay Counselor, ref SDS 0 5R7J,
070643 - following the visit on 040613, when she announced a career change to
070644 - the ministry doing counseling to help others. ref SDS 11 286L  Patty's
070645 - study and interest in the book...
070646 -
070647 -                     The Purpose Driven Life
070648 -
070649 - ...written by her minister, Rick Warren, will provide inspiration and
070650 - important ideas for counseling. ref SDS 11 C64M
070652 -  ..
070653 - The power of "purpose" lights the way to discover the best course, and
070654 - brings strength to maintain focus when disappointment seems too great
070655 - to bear; but, as well, when triumph comes too easy to appreciate the
070656 - gift of family, church, culture, and community in traveling the
070657 - journey of life.
070659 -  ..
070660 - We need to mention that a patient next to Millie in the chemotherapy
070661 - clinic is reading "The Purpose Drive Life," and feels greatly aided by
070662 - this experience, reported on 040710. ref SDS 12 QR48
070663 -
070664 - *******************************
070666 -  ..
070667 - Submitted a letter to Patty saying....
070668 -
070669 -    1.  Subject: Congratulation on Graduating!
070670 -        Date: Mon, 26 Jul 2004 23:25:18 -0700
070675 -         ..
070676 -    2.  Patty,
070678 -         ..
070679 -    3.  Wonderful news to hear of your graduation and progress moving
070680 -        toward a new career in counseling to spread the word.
070682 -         ..
070683 -    4.  The book, "The Purpose Driven Life," which you inscribed for
070684 -        Millie and me, during our recent visit in Nipomo on 040613, is
070685 -        a great treasure, and will surely be of assistance in your new
070686 -        work.  Thought you would be pleased to hear of the glowing
070687 -        endorsement by a patient next to Millie at the chemotherapy
070688 -        clinic, as related in the record today. ref SDS 0 QR9G
070690 -         ..
070691 -    5.  Patty, your new linking skills, demonstrated in a recent letter,
070692 -        will be helping clients make the connections that create purpose
070693 -        in their lives, just as you have found a new calling in your
070694 -        life.
070696 -         ..
070697 -    6.  Again, congratulations to you and to Pablito on this new course,
070698 -        and to your church for recognizing your talent and determination
070699 -        to succeed.
070701 -         ..
070702 -    7.  As ever,
070704 -         ..
070705 -    8.  Rod and Millie
070706 -
070707 -
070708 -
080486 -
080487 -
080488 -
080489 -
080490 -
080491 -
0805 -