Updated Friday, May 1st, 1998 17:00 PDT

I wonder at times why some are chosen
to leave so soon.  Then I remember
who has left, and I know God
must have wanted them home
because he missed them

In lieu of flowers, Sharon wished that you give to the following charities:

Susan G. Komen Breast Cancer Foundation
5005 LBJ Freeway
Suite 370
Dallas, TX 75244
Phone: 972.855.1600
FAX: 972.855.1605

The Community Breast Health Project
770 Welsh Rd., Suite 370
Palo alto, CA 94304
415.725.1788

San Francisco Ballet Association
For further information on becoming an Association Member please contact
Ron Ellis, Membership Programs Manager, at 415.553.4650 

---

Many people have been sending words of thanks and admiration to me for what I was able to do for Sharon, however I cannot and will not take all the credit.  As with any conductor, without company, I'd just be standing there, waving my arms around like a fool.  I'd be in dire straits currently should I have been the sole support for Sharon during the last few weeks.

The following people were critical in their impromptu roles as caregivers and gophers. With their open minds, hearts, and ears ready to selflessly assist in any way possible, we only had less than 3 weeks to prepare for what we thought we had 4 months to do as life does not always conform to our human schedules:

Thanks to Gail Stamps, Tarah Hernanadez, Spence Murray, Chris McAfee, Aimee Paquin, Raven Erebus, and Sarah Ferguson for providing tender assistance and moral support.  Their ability to multi-task, self-direct, cooperate, and contribute without direction stand out as a tribute to their love and respect for Sharon and for each other.

The comfort of Sharon's family was as also a high priority for me personally. A special thank you to the Iimura family for finding trust in us to allow us to care for Sharon without the benefit of first knowing who we really were -- we are profoundly honored.  In retrospect, removing the burden of busy work and freeing them to deal with their impending loss worked out best I think -- it allowed them to concentrate on their personal needs with Sharon without too many distractions.  I hope I succeeded. Please forgive me of any transgressions I may have made inadvertently.

Many other people too numerous to name also contributed:  Food seemed to appear from nowhere, flowers arrived, errands ran, backs rubbed, linens and dishes washed, photos scanned, music played.  This is not surprising to me -- Sharon earned every last bit; she attracted the best, indecisiveness was not a quality she tolerated well.  And finally, to my employer who allowed me to do the right thing at the right time, I thank you.  As with maternity leave, this duty to care for another at the end of their life is just as important and sacred.  I cannot imagine working for a company which does not hold these values dear.

My role as primary caregiver was a solemn one, similar to a midwife in responsibilities: to provide care and comfort, help the individual through their transitions, console fears of those distressed, facilitate communication when needed, educate and inform, offer patience, and above all: listen.  This was not a rehearsal, we had to get it right the first time, there was no time for second tries.

Sharon granted me, as she had few others, this intimate responsibility because we were able to communicate openly, honestly, and caringly from the time we first met -- no pretense existed, no euphemisms, no idle chatter, just direct, pure communication.  She knew what was probably going to happen to her body years ago, even though she continued the fight for cure; she knew each milestone, symptom, and process she'd pass through.  There would be little or no surprises.  We faced many challenges together, hand in hand.

With my limited novice exposure and experience in the medical field at a previous job, my thirst to know how and why things worked, books on how we die, and especially my love for her, allowed me to separate the disease process from the person diseased.  I would not have the time for paralyzing fear of the unexpected nor squeamishness of her slow deterioration during her final journey.  I had to concentrate on Sharon the human being, not Sharon the cancer patient.  I am not a doctor, nor nurse -- my level of knowledge is easily attainable by anyone -- it's simply within reach of a few books, common sense, and human sensitivity.

Don't be afraid to ever take on this role.  You'll be amazed what can happen.  Wonders and insights into your own life will appear which no one can describe, no book teach, no film document.  It's the private moments when all pretense is stripped away and time stops do they reveal themselves.  There is magic in this world, just get out of your own way and let it happen.

As caregiver, the responsibility of helping those grieving around her rested with me also -- demystifying the disease process for some, explaining how the medications were working, how she wanted them to be administered and why, most of all reassuring people that we could talk about these things with Sharon -- there would be no conspiracy of silence.  We all witnessed that with preparation, the unavoidable can be faced and dealt with in an open, caring, and humane way, not in an institution where healing and repair are worshipped and death is shunned and a mark of failure.  Each one of us all deserve what we have done for Sharon.

For those of you harboring guilt of things undone or unsaid to Sharon, you should not blame yourself.  Her health declined more rapidly than we all expected...only on April 1st were we talking about preparing for this in July or August...most of us were shocked at the speed of her decline given she was at work just the week before.  Perhaps one path to redemption is to do for another as we have done for her.  Just as when a stranger gives a dollar at the checkout stand when we're in need, don't bother seeking out the stranger for repayment, simply have a dollar ready for someone else.  Pass on, no pass back. Sharon often asked us how much we've given to charity recently.  It's really simple: be it clothes, food, blood, time, work, or simply your presence volunteering, give of yourself.  Like she said: "Stop whining, stop standing around, do something, why are you complaining to me?"

You cannot really appreciate your life until you come to terms with your eventual mortality -- waking up tomorrow is not a guarantee each of us must accept if we are to take on this challenge.  Each of us blossoms with this understanding at different times; for me, it happened when I suddenly lost a co-worker 11 years ago to leukemia, he was only 19.  If you're ready, I hope you can find your path to greater insight with Sharon's passing.

Over the last few days of her life, I told her how much I loved her and that I would miss her -- why do we have to wait until death is near to say these things?  Stop putting things off, life awaits.  Even I must let go of things undone with Sharon:  a new flat to decorate, restaurants and shops to discover, a new city to explore with her guidance -- to ride the J Church Muni just to see where it goes, and I taking her to share the hidden treasures of Paris where tourists rarely venture.  I awaken each day with the feeling that a little piece of the world has been misplaced.   But there's no need to search further than within ourselves, just pause, listen and you'll find her, giggling as usual.

Finally, to Tad and Irene -- thanks for Sharon.

Established in 1982, Hospice by the Bay is a
nonprofit, free-standing agency that provides both
home health and hospice care in San Francisco and
San Mateo counties. Hospice by the Bay is a
Medicare, MediCal certified agency, and is
JCAHO accredited with commendation.

How We Die : Reflections on Life's Final Chapter
by Sherwin B. Nuland
Paperback
Published by Vintage Books
Publication date: January 1995
ISBN: 0679742441

Death : The Final Stage of Growth
by Elisabeth Kübler-Ross (Editor)
Paperback, 208 pages
Published by Simon & Schuster (Paper)
Publication date: July 1997
ISBN: 0684839415

News from April 18th: Housewarming still "on", it's just really a decompression day and a day to be together.  The weather's good, life is good, friends are good.  If you bring flowers, bring a vase, or I'll start using beer bottles.

Thanks to all that have come by this week or have sent words of support, kindness, and love.  We wouldn't have made it without them.

19:30 Regarding Memorial Service: As of now, the memorial is planned for Friday, April 24th in Cupertino around 3/4 o'clock, more details will be available soon.

News from April 17th: Today is going to be a long day.

07:30 She's very weak and disoriented trying to direct who does what to prep her for her for the trip to the clinic.  You know Sharon, she's determined to get this done, while no one else thinks she should.  I'm waiting for the Dr. to call and assist in making the decision from the top down.  Her family is also supportive of not proceeding.  In general, she's very weak but can shuffle with assistance. You *cannot* carry her -- her bones an tumors are so sensitive to pressure that she cries in pain when you try.  Now, the only way is via wheelchair and porting her on stairs.

Not to sound trite, but she's fighting to stay in control of everything, she should have been comatose and incontinent long ago.

Gail Stamps is staying through the weekend even though a family member had exploratory surgery done this week as lymphoma was suspected.  The results: negative, no cancer.  Chris McAfee stayed the night too, we needed him.

Housewarming:  If she survives the night (in our non-medical opinion, it's a 15% chance she'll make it), come by anytime after 9am. Saturday. But if you haven't seen her yet, come today after 12-1pm. If she dosen't make it, please come by, because we'll need you.

For those of you asking how we're doing, Sharon's cruise staff are all on-deck with clear skies ahead -- second star to the right and on till morning...

Here are some pics from Wed night:

Sharon holding court.
Her Majesty is pleased.
Bad-Crown-Hair day (sitting next to brother Russell).

09:00 I've just spoken with her and explained the risks of travel and remended her of all the work done to make her comfortable at home to her specifications.  Dying in the car on on a gurney in a hallway would not be pleasant.

She seemed to agree.

13:00 Sleeping soundly, even snoring. No pain medication since 10am.  Do not call before visiting, just come.

News from April 16th:  Sharon wants another thoracentesis (chest tap to remove fluid) for Friday, she feels she is strong enough to tolerate it.  We called the physician Thursday night and she will try to get an appointment for 10am.  We are using oral sedatives to ease her breathing, but not enough to affect her mental alertness.

When visiting remember the some people would like private time with Sharon.  Most times, groups are fine, she's remarkably alert and *loves* having people around.  Just use common sense and sensitivity to other visitor's time -- many have travelled a long distance to see her.

For myself and the others giving us direct and indirect support namely: Tara Hernandez, Gail Stamps, Chris McAfee & Spence Murray (aka Interiors 'R' Us), Aimee Paquin, Raven Erebus and Sharon's family, the outpouring of support has been great and welcome.  It's all very simple -- you just do the right thing -- no committee forming, no analysis, just divide and conquer.

The flowers and cards are wonderful, Sharon really appreciates them as do we.  Keep it up.  We'll all get there OK.

News from earlier in the day: There is no need to call before a visit. Due to her irregular sleep schedule, be prepared to hang-out in the living room and chat before heading back to her room.  Don't know if she'll be making an appearance on the living room futon.

She's really sleepy and can hold lucid conversations for short periods, time-line and short-term memory are really affected.  Be patient when speaking to her -- "I just said ..." doesn't help, just start over or try a different angle of conversation.

Folks, do not put it off any longer if you want to wait until the housewarming, please just make sure you're in good health, a respiratory illness would make it very difficult fer her as she's still dealing with fluid in her chest cavity.

News from April 15th: Sharon's losing her short-term memory, time-line (can't tell what day/time it is).  She's easily confused as to decisions she recently made.  This is due to her liver failiure, chemicals are building up in her bloodstream that cause the mental degredation and increased fatigue.  She still has clear, lucid moments, but they are fewer in number.  Her chest is beginning to build up fluid again, we will know tomorrow if she can tolerate another thoracentesis to drain the fluid.  If all goes as predicted, she will continue to sleep for longer an longer periods and, hopefully, not awaken.  This is the best anyone can hope for.

• Q: What's going on?
• A: Sharon and her liver can no longer tolerate chemotherapy, any further treatment would have caused complete liver failure sooner. She has contacted Hospice by the Bay to supply in-home care.  Hospitalization would have limited visiting hours and removed control of what goes on around her.

• Q: Can't she try other treatments?
• A: Her liver cannot tolerate it any longer.

• Q: What about the news about Tamoxifen?
• A: She was on Tamoxifen for 2.5 years, she stopped its use after it became ineffective.

• Q: How extensive is her disease?
• A: The cancer has metastasized all over her body, mostly her bones, which causes them to be very sore and brittle -- she feels she cracked another rib during a coughing spell this weekend.  She has tumors in her liver, lungs and other organs.  In addition, she has a mild cancer rash in a few locations, but it's not a source of great discomfort.  Her lack of liver function is of primary concern; her bilirubin level was measured last Wed. the 8th at 3.9 mg/dL -- normally it should be between  .1 and 1.2, other blood work show various measurements off the scale by a factor of 10.

• Q: Is she getting around OK?
• A: She walks around the house with a 50ft. oxygen line; the oxygen concentrator sits in her room by her bed (it sounds a bit like an air conditioner, not too intrusive) -- it extracts oxygen from the ambient air and produces 97% oxygen output at a maximum of 5 L/minute.  Outside the house, it's Driving Miss Sharon...wheelchair and portable tank in the back.  Hi, I'm Darin and I'll be your cruise director...

• Q: Is she eating OK?
• A: Yes, in small amounts and mostly carbohydrates; things like rice soup with small amounts of chicken and vegetables. Mostly she on liquids such as Ensure, Gatorade, and water.  She takes papaya enzyme tables to assist along with children's chewable vitamins.  Proteins are more difficult to digest and since her liver's not really operational, she does not produce enough enzymes to digest them well.

• Q: Is she comfortable?
• A: She was having problems breathing this and last week.  On Wed. 8th she had a thoracentesis done to drain fluid from her chest cavity (luckily not from her lungs) -- about 2 cups of fluid were drained.  She's absorbing oxygen well, but due to the fluid buildup shrinking her capacity, she was panting a bit.  She had another thoracentesis done on Mon. the 13th, where they extracted 2-3 cups.  The procedure uses 4 x-rays to locate the fluid location, then ultrasound during the insertion of the catheter through her back (novocain is used to lessen the discomfort).  We're having a portable oxygen bottle delivered to help her alert and comfortable.

• Q: What about her family?
• A: Her parents Tad and Irene have flown in from Honolulu, Hawaii and are staying nearby, her brother Russel lives in Sunnyvale and is also here.

• Q: What about pain medication?
• A: Sharon's sensitive to opiate based pain killers, unfortunately most pain medications are.  She's really good at knowing how much to take and when.  Primarily she uses Ativan tablets to ease her breathing and general discomfort.  She also has Roxanol liquid for sub-lingual (under the tongue) usage; it's pretty effective, we used a half dose (.5cc) and she responded well.

• Q: What about all the legal stuff?
• A: Her brother has power of attorney to take care of all medical needs, her uncle Wallace, the financial. Sharon has completed her will and has DNR (do not resuscitate) orders on file.  In addition, her final wishes are for cremation and ashes to be scattered off the California coast.  She thinks that a funeral/memorial is OK, but has no definite plans.

• Q: Can I/we see her?
• A: That would be a big "Yes."  Many people are uneasy about these situations, many patients isolate themselves -- not Sharon.  Evenings are the best time now, the schedule below will help give you an idea what's going on.  Last night  (the 13th), we had a house full of friends from work over, she really enjoyed it.  Please don't isolate her, these four walls get boring real fast.  Due to her weakened condition, travelling is kept at a minimum; she's planning on going to the office to say good-bye.  I'll send mail out to those who can get the word out quickly of when and where.

• Q: Can I/we come to see her at home?
• A: That would also be a big "Yes."  Sooner is better than later.  Evenings are the best, directions and phone numbers are below.  You don't need to bring anything but your honesty -- as I like to say, "No tap dancing allowed" -- this is not the time for small talk, but it is time for recalling good times, laughing a bit, and crying a lot.  It's OK, Sharon wants this -- and as you know, she gets what she wants.  Some things never change.  However, if you are not feeling well, a phone call is better; getting a cold or flu now would be a BadThing[tm].

• Q: Where is she?

A: She and I are living in San Francisco in a two bedroom flat hereby christened "Fort Hancock" (There's no 'd' in Hancock) in the Noe/Castro area.  I've taken personal time off work to manage her care along with family and friends with the additional assistance of Hospice by the Bay.

• Monday, April 13th:
• 8am: Called for Thoracentesis appt.. for 10am.  Got in at 11:30, 2-3 cups of fluid drained from chest cavity.
• 2pm: Parents and brother arrived to meet with Hospice social worker.
• 6pm: Friends came over some never left ;)
• Tuesday, April 14th:
• Rest day.  We started continuous oxygen today...really helped her breathing.
• Come on by this pm after 4.
• Wednesday, April 15th:
• 10:30am: Haircut in PA.  Fashion knows no barriers. (She did not make this appt. due to fatigue)
• Then to PA house to collect more stuff to move to SF
• 4:30pm: Dr. appointment to check condition and medications. (Perhaps final visit)
• Guests are fine after 8pm.
• Thursday, April 16th:
• 11am: Visit by Hospice rep. to check how things are going
• Visit to NSCP cancelled.  She is not going anywhere.  If you want to see her, now's the time. No need to call first; be prepared to hang out in the living room.
• Friday, April 17th:
• Nothing planned, come over anytime after 11am. No need to call first; be prepared to hang out in the living room.
• 22:13 At last, peace.  Sharon's body finally caught up with her spirit and calmly left us.  All of us present will never forget that moment -- for an instant, time stopped, there was only silence and awe, then tears.  No more pain, no more suffering, no more fighting, no more fear of the unknown.