BMT Day +166 Kidney beans … Teri’s thoughts … alopecia … Dad

Kidneys

Last Tuesday, Teri’s creatinine level went up precipitously to 3.2 indicating more kidney dysfunction.  [Dialysis was mentioned.]  After reviewing her course and her medications, it seems most likely that it is the result of the intractable BK virus not only causing bleeding from the surface but deeper kidney damage.  It has been going on nearly four months.  We began administering IV fluids at home.  On Friday, we the level was back down to its previously elevated 2.2.  We breathed a huge sign of relief.  Teri spent four days in the Day Hospital this week including IV red cell transfusions, platelet transfusions, IV immunoglobulin and a paracentesis. She will need a nephrology consult.

Teri’s thoughts

It has been a trying week for Teri, both medically and psychologically.  She has asked … “Why me?  Why do I have to carry such a burden?  Why does something else always have to go wrong happen?  She sobs in private.  She tells Peg that she is pushing on because of me.  She tells me that she couldn’t do it without me.  She tells me that she loves me, that she couldn’t have persevered without me.  Yet, as I struggle too, I still feel that she is remains the mentally tougher of the two of us.  She keeps up a good front when you call, but she struggles at times.

Alopecia

She has not had hair regrowth in six months.  Generally it has come back in two.  We are beginning to worry that it could be permanent alopecia.  Teri has wanted to be simpatico with Ben – and shaved her head proactively to match his baldness.  Teri takes this possibility with relative equanimity.  I look at the literature and yes it can happen post-BMT, possibly busulfan-related, I attach these articles to Dr. H.  She says “Let me get a new wig.”

Dad

Dad still insists that Chinese medicine will cure Teri although he is thinking of leukemia, not the complications of BMT that we are dealing with.  He wants my cousin’s wife to return.  We discuss the fact that I’ve spoken to Chinese AML experts at Taiwan National University, Hong Kong University and Ruijin Hospital in Shanghai about whether there are specific Chinese medicines that can serve as an adjunct in patients with AML.  None, I was told.  Our team has asked us not to mix Chinese herbs with her regimen at this time.  To Teri’s chagrin he calls up my cousin’s wife and tries to schedule her to come. 

Last night, the light went on in our bedroom at 1:30 am and it was my father, dressed, intent on telling us, “Teri will be cured.”  He means to be helpful and thinks positive thoughts, if not always at the best time of day.

Friends and social life

Our limited in home social life has had special effects.  Even though we can’t go out much, we do see friends and family who come to visit and help.  What we lose in volume of interactions, we make up in depth as many many have stayed with us, and shared their stories.  It has led to some deep, and at times existential discussions.  It is amazing what we all have to deal with individually.  We also learn about how others cook and stay healthy, even learn about our own house.  Terri Lin showed me how the tray under the filtered water tap on the front of the refrigerator pops out.  Never knew it.  Peg introduces us to Arnica gel to help heal bruises and it has dramatically reduced the 3 week old purple bruise on Teri’s chin incurred from her fall.  

Elena was going to come and cook for us this past Wednesday.  However, Teri had a sudden craving for Korean BBQ (Kalbi) and we spontaneously went out and ate ‘Seoul’ food with Elena, Paul and Peg.  It hit the spot, but wore her out.  Yesterday, Kok Peng Anna and her spry 90 year mother came from Madison and brought a Chinese beef soup and noodle dish.  Lily from Columbus sent frozen bing zi, jiao tzi, and spare ribs by overnight mail. 

I see a new platform combining socializing and support, friends lining up to come, visit and cook!  Sign up sheet: ________

BMT Day +161 Ups and downs … new antiviral strategy … long-term care … tree fruits eaten … a sour taste

A typical week, last week.  Three days in the Day Hospital at the Cancer Center.  Tuesday:  Lab tests, Wound Clinic, BMT Clinic, IV platelets.  Friday:  change of both nephrosotomy tubes to larger sizes due to persistent leakage, lab tests, premedication, IV Cedofovir, IV red cells, IV platelets, Saturday:  IV blood and IV platelets. 

Overall, lower energy level than the previous week.  

A new week, today at the Day Hospital for platelets, IV fluids, IV albumin.  Her blood work showed a good marrow response – WBC, neutrophils, red cells, platelets.  Unfortunately, her kidney function has worsened considerably this past week.  This led to an urgent ultrasound which did not show the feared hydronephrosis – blocked ureters leading to distended kidney collecting system.  We are quite concerned. 

It at times seems like ‘déjà vue all over again’ as Yogi Berra once said. 

New antiviral strategy

The experimental drug CMX 001 was stopped on July 11^th because it was suspected to be the cause of Teri’s acute and confounding confusion.  Unfortunately its discontinuance led to an increased number of > 1,000,000 BK viral copies in her serum indicating a more active infection causing more bleeding into the urine from hemorrhagic cystitis and nephritis, a brighter Buckeye red.  In turn, this bleeding causes loss of red blood cells and consumes platelets that are trying to stop the bleeding leading to more frequent transfusions.  Her hemoglobin dropped to 6.5, as low as it was when she was first diagnosed with leukemia in February 2010. 

So the new anti-BK virus strategy is as follows.  Dr. H. restarted IV cedofovir on Friday July 22^nd as a once weekly IV infusion with pre- and post-probenecid, followed by an IV fluid flush.  She tolerated this regimen in April.  This agent is very closely related to the experimental drug CMX001 (cedofovir plus an added lipid moiety) that was stopped because of the suspected cerebral side effect.  We have definite trepidation about using it and hope it does not lead again to acute dementia.  The premedication probenecid slows the antiviral excretion and keeps the cedofovir level high.  But, it caused significant sedation last time and did so again to a lesser degree this time.  She also began leflunomide, an adjunctive rheumatoid arthritis drug called disease-modifying antirheumatic drugs (DMARDs) that is reported to help fight the BK virus.  The list of potential side effects is impressive beginning with liver injury, which Teri has. 

Travel and travelers

Teri was disappointed to learn from Dr. H. that she could not fly to Vancouver in late August as we had hoped because her unrelenting renal bleeding necessitates frequent transfusions that would be difficult to arrange.  She was happy to find that she will be allowed to go to East Lansing for the weekend of Ben’s white coat ceremony, an initiation rite of passage at medical school.

Last week, Susan (gourmet club) from Columbus cooked while Teri (sister) from Hayward kept the house stocked and clean and Teri moving between stations at the hospital while I was on consult service – quite busy in pediatric ICU and operating room.  Last Sunday, Steve, Mary, Memee and Ray all visited and brought our favorite Vietnamese bun (cold rice noodle salad) from Madison.  Yesterday, Bronze from church did a optician home visit and fixed her glasses and Jodie brought a special multigrain bread from her organic food store. 

Since we no longer have an outside social life … these visitations have become our de facto in home social life. 

Long-term care

We have been remarkably fortunate to have a large and willing village that has provided nearly continuous support since early April, some 3½ months.  After long discussion, it has become evident that once our friends and family end their stays after next week, given Teri’s slow trajectory of recovery, we will need more help.  Teri remains disabled in many aspects … and no longer can be left alone in light of recent events.

With the help of our financial counselor who has gone above and beyond, we have begun to develop new support infrastructure.  We initially engaged our own highly recommended person to come to the house and take Teri to the hospital.  However, to fulfill the requirements for reimbursable long term coverage, we needed a licensed CNA.  That began yesterday.

Tree fruits can be eaten

One gustatory improvement has occurred in the transplant aftermath.  Teri has oral allergy syndrome in which her mouth swells up if she eats tree fruits including raw apples, peaches, nectarines, plums and cherries.  I asked Dr. H. if per chance, given that her immune system is reconstituted, she might have outgrown these food allergies.  He thought she might have and allowed us to try small amounts.  Thus far, she can tolerate apples, nectarines and cherries.  Hey, hey, hey.

A sour taste

Something bizarre occurred several weeks ago.  I just learned that one support individual discarded two of our art pieces, a laughing Buddha sculpture and prayer wheel collected in Tibet.  I’m upset and I’m investigating. 

BMT Day +152 Two good days … how am I doing?

Teri puttered about the last two days doing stuff.  Sorting.  Organizing.  Discarding.  Writing numerous reminder notes to herself.  She talked with Ben and I.  She thought about outdoor furniture.  She dealt and completed a game of solitaire, the first in many months.  She ate.  She took her medications.  We flushed her three PICC ports and two neph tubes.  Last night she slept for 6 hours continuously for the first time in six months!

Upon awakening from a nap yesterday she exclaimed, “I’m so happy not to be in the hospital!  I’m still here [at home] … and I’m not crazy!”

How am I doing?

Many of you have consistently and considerately asked me how I’m doing.  It is easy to be glib – I’m doing OK – but in reality I’m genuinely fatigued and short on reserves.  Between being a good stiff upper solider and honest, I’m often at a loss for what to say.  It has been too long of a course to be able to keep up the grin and bear it.  It has been too rocky a course without a day-to-day steady incline towards recovery.  It is a 24/7 intensive nursing role with no respite.  We have a constricted life outside of in patient hospital, Day hospital, living basics, and visits from supportive family and friends.

I have put all my eggs in Teri’s survival basket.

Today was my birthday.  A bike ride and massage provided by Ben, Rachel, and John.  Really worked out a lot of crinkles, either stress-related or bike related.  We had dinner out with my father, Teri and Ben – a logistical challenge that we successfully met.  Excellent grilled shrimp, gazpacho, outstanding steaks (best ever according to Ben), mango pork chop followed by hazelnut lava chocolate cake with vanilla cream. 

I’ve hung on to exercising and writing this blog as two non-work actions to help keep myself sane.  I have to brag a bit.  Over July 4^th weekend, I rode 60 miles at an average pace of 18.6 mph, not bad for a 61 year old old fart.

I learned several weeks ago that I have been selected to receive the Murray Davidson Award from the American Academy of Pediatrics for career contributions to pediatric gastroenterology.  It feels good to be recognized for past contributions but does it compensate for having to give up serving as president of our professional pediatric GI society NASPGHAN? 

All in all, it was a nice birthday … in part because Teri exuded so much positive energy.

BMT Day +150 More confusion … readmission … recovery … still a conundrum

More confusion

Teri was discharged on Monday afternoon, after ‘waking up’ and regaining coherence at 1 am Sunday morning. 

Monday and Tuesday, Teri had active and interactive days, jubilant, herself.  Rhonda cooked up a storm and froze ahead using two gourmet recipe books written specifically for cancer patients e.g. frittata, avocado dressing.  As with each of our support crew, when it quiets down late after Teri has succumbed to respite however brief, we share our respective burdens with our parents, sibs, kids, health, work and health insurance.

On Wednesday, Teri took Ben and Rhonda to the museum to view the China exhibits.  Gradually, she became more somnolent and forgetful, falling asleep every 15 minutes even with egg roll in hand, unable to recall that she had just visited the museum.  She confused Ben with me.  She became obstinate.  Ben kept me up to date, while I was in the clinic. 

What could happen next?

A flood

Wednesday evening, at home, I found Ben wading in the bathroom after Teri had inadvertently clogged the commode with toilet paper.  Despite our concern that she could slip on the wet tile, Ben evacuated her safely.  After extensive mopping, plungers and flexible steel tubing failed to clear it and we had to resort to our building man after a king’s ransom.

Teri seemed unperturbed, lost in her reverie.  I’m wondering if it is happening again? 

Fearing a potential fall, I cajoled and pleaded with Teri was not to leave the bed that night.  But she did.  I held her hand throughout the night trying to keep her in bed and managed to do so several times, but not all. 

Thursday at 6 am, I awaken with a start to Teri’s adjacent empty silhouette in the bed sheet.   In the bathroom, she had removed most of her edema bandages but didn’t know why.  She was muttering to herself.  She couldn’t operate the faucet handles and kept trying to turn the spout.  She did eat breakfast

Readmission

I texted Dr. H. with an update, requested additional laboratory studies and possible readmission to the hospital.  I went to work, then his nurse called and said Dr. H wanted to readmit her.  No surprise.  I finished my conference call, and returned home to take her in.  I had no idea how we would manage her even with three of us at home unless we took three hour shifts all night watching her.

Thursday 12 noon, Teri was readmitted for confusion.  The oncology fellow asked her about month, day, day of the week, location, President of the U.S.  She batted 2 for 5.  She answered in a emotionless, monotone, robotic voice.  They asked her to write her name and date, she laboriously printed out TERESA LI.  She couldn’t spell July.  

I frightens me to see her as a shadow of herself.

She went for her scheduled nephrostomy tube change due to continuous leaking that began after her fall last Friday.  Fortunately the tube only to be repositioned, not re-guidewired and replaced.

Recovery

Thursday 6:30 pm  At dinner at a Brewer’s tailgate party in the oncology ward lounge replete with hot dog cart, umbrella, uniforms, nachos/cheese, Brewer’s paraphernalia (Teri got a tee shirt), Teri began having extended conversations with several nurses, ate a whole hot dog and led the singing of “Take me out to the ball game.”  Teri seemed to reemerge from her cocoon of confusion. 

Thursday 8:30 pm  She was asked to sign a consent for blood transfusions.  I offered to sign.  She said she would do it.  I looked at her signature.  It was … normal cursive, not the staccato print!  She gave Ben and I a warm goodbye.  But, she doesn’t remember the last two days, again!

Why such a detailed time line?  To document that Teri emerges from deep dementia to normal know-how in mere 6 hours!!!

Friday am.  She calls “Hi, when are you coming?  Can you bring my nail file?”  She calls early when she feels good.  When hospitalized for 80 days and 54 days post transplant, she called only sporadically, sometimes not for weeks on end.  She received blood transfusions X2, and platelet transfusions X2.  The panel of lab tests was unrevealing except for a slight elevation in the ammonia.  Notably, there was no PCP found on this urine toxicology test that had found previously. 

Although undiagnosed, Teri had returned to herself, and was discharged to come home late Friday afternoon.

I realize how tired I’ve become.  This is a living on a different edge.  It is not the edge between life or death.  It is precipice of not knowing what lies just beyond the edge.  Is it her demented twin.  Is it a flood.  Is it a fall and potential bleed.  Is it her normal self? 

Still a mystery!

                                                                                 

So what is causing this acute and profound confusion, dementia?  Will it happen again?  Will it get worse?  Will it leave any long term effects?

Although I thought I had wrapped it up as a O-B1-kenobi vitamin deficiency causing Wernicke’s encephalopathy, it was not to be as simple as that.  Wernicke’s usually has positive MRI findings and more opthalmoplegia (eye paralysis) … but it can continue on even after supplementation. 

The evaluation effectively excludes all the intracranial bleeding or pressure, encephalitis, sepsis, urinary tract infection, abnormal chemistries, liver failure.  The elevated ammonia is not enough to cause this. 

The phencyclidine (street name Angel dust) found in her urine last hospitalization can only be a false-positive test.  We reviewed all her foods, meds and supplements with those who had administered them over the previous 24 hours prior to each bout of confusion.  The BMT team focused on the only non-food, non-prescribed drug received which was a protein-vitamin supplement (prescription only) given to aid her intestinal recovery.  They thought that it could potentially be contaminated.  But by a street drug?  Everybody is reaching.  The team had asked us to stop it – we did 7 days ago – it wouldn’t be implicated in this second bout of confusion.  As far as further reaching, Dr. H. did ask Ben if he was slipping his mother any pot.

The only remaining unknown is the experimental antiviral agent.  It is an established agent now modified with a lipid molecule to aid in penetration into the infected cell.  Could this agent be causing a false-positive response to PCP?  Could it be acting as a PCP-like substance?  The company has never seen a reaction like this.  That is the going hypothesis.  We will hold it.

The oncology fellow suggested as a true unknown, Teri’s case should be featured on “House” a TV show on medical mysteries that I have not yet seen.

Today, both Ben and I witnessed up close and personal Teri’s six hour surfacing from deep six confusion to clarity.  Now twice.  Hopefully not thrice.

BMT Day +145 A rapid turnaround after B makes a diagnosis!

Yesterday was an emotionally and physically exhausting day at the hospital:   trying to restrain, cajole, feed, toilet ‘Teri’ who was a constant moving target, and, to find any vestige of her true self.  After leaving, I went to pick up Ben at the airport.  He was on his way to Camp Discovery in Minnesota to serve as a camp counselor for children with skin diseases.  After I called him about Teri’s dramatic dementia, he decided to come home.

At 1 a.m. I received a call from the hospital.  I dreaded answering because they only call if there has been a marked change in status.  “Mr. Li, I know it’s late but I thought you would want to know.  Teri is talking to us, she is lucid about you and your family although she cannot recall anything from the last two days.”  JOY.  RELIEF.

She just received two doses of IV thiamin (B1) at my suggestion and is already improving in 8 hours.  I made the diagnosis of Wernicke’s encephalopathy, a long lost diagnosis pulled out of the faded recesses of my medical school memories 38 years ago.  I’m happy.  I feel good.

                                          

Today – Sunday – 48 hours after this started, Ben and I went to the hospital to see her.  Teri’s door was ajar, she was radiant, she was smiling, she recognized me, she was coherent, her speech was clear and organized, she hugged Ben for the longest time and wouldn’t let go.  She was still tethered to the EEG monitor.

She asked me to recount minute by minute what had transpired during her amnesia.  She didn’t remember any part of Thursday night or all day Friday including the spinal tap.  During that fateful Friday morning, she was disheartened to learn that she had left her neph tube valves open and they had leaked out.  She asked if I had gotten the bloody urine stains out of the carpet.  She was surprised to learn that she had six extra Depends on the outside of her pajamas.  I suspect that the one down near her ankles triggered her fall.  On Saturday, she recalled brief moments of resisting the nurses until she stated that she had decided to give up struggling and just resting (accurate).  She was stunned to learn that she had bit one of the nurses who helped restrain her.  I told her that that nurse had to get a rabies shot.  She looked at me wide eyed for a second and then, began to laugh.

We dodged another bullet.  Teri required one-to-one 24 hour nursing care.  She was totally unmanageable.  She had to be fed.  She was at great risk of falling or hurting herself.  She was about to be given major tranquilizers for control.

Teri has returned from nether, nether land. 

Rhonda a friend from Columbus arrived in the afternoon.

We have missed participating in many, many things this past year due to Teri’s illness, none more important than this one.  On Friday, the day of confusion and admission, we missed even attending in spirit the wedding of my best friend Steve’s daughter up in beautiful Crested Butte, CO at 10,000 feet.  Ben represented us there and rendered real the family camaraderie, the ceremony, the cuisine, and the bucolic Alps-like setting.  Congratulations to Becca and Josh!

BMT Day +144 Back to the hospital … mysterious confusion

Yesterday was another sharp upside down curve in her roller coaster ride that resulted in being readmitted to the BMT ward … a return Teri vowed she would never consent to.

Last week

But let me start to the beginning of the week.  Teri continued to make steady and remarkable progress.  Although still walker bound, she was going strong Thursday night reorganizing the utility room, working on long term health care.   She was joking, laughing and singing along.  She was eating every 2 hours and became irritable if food was not readily available – pressure on all us sous chefs.  We called her our lean mean eating machine!  In short, she was herself.

On Tuesday, she went to the Day Hospital for blood and platelets, had her neph tubes dressing changes, and saw the BMT physician’s assistant (PA) – a good visit. 

During a 3 week visit here, Teri has become very close to Grace (niece from San Jose).  Grace has gotten in complete sync with Teri’s needs and schedule with extreme patience.  She cooked, she made protein shakes (frozen) for weeks to come, she figured and wrote out Teri’s meal and snack schedule, she loaded her new iPad with music and taught her how to use it.  She taught Teri Kegel exercises to help tighten her core abdominal muscles and help reduce her ascites (abdominal fluid) – it is helping  She cajoled me into trying fresh beet juice with wheat grass tonic (no comment).  From a culinary standpoint she demonstrated that ‘dropped (on the floor) chicken’ is flavorful and that anything (chicken, shrimp, eggplant) is tasty when coaxed with panko,

On Thursday morning at 3 am she awakened with an anxiety attack, deep sobbing.  She said it was about an overwhelming fear and premonition.  I managed to talk her down. 

Back to the hospital

On Friday at 5 am, I heard her cry out as she fell.  I found her next to the bed on the floor totally confused with her neph tube valves open and bloody urine all over the carpet – something that hadn’t happened in three months of fastidious care.  She was unable to walk.  With the help of Judy, we transported her to the Day Hospital for red blood cells, platelets and lab studies, and a visit from the BMT physician’s assistant.  Anticipating the obvious, she was indeed admitted at 4 pm and immediately a brain MRI (for blood clot, infection, excess fluid) and spinal tap (for infection) were performed.  She was so disoriented that it was easier for me to ease her into the hospital against her will.  I left her with a bed alarm that would not allow her to get out of bed, thereby risking a fall, without assistance.

What the heck is going on?  The preliminary results were all normal.  What could progress so quickly in 30 hours?

At Saturday noon, Teri no longer recognized me.  She was talking half gibberish.  She wasn’t making eye contact but looked to the side of you.  She kept trying to leave the bed.  It took three of us to hold her down at times.  Her responses to questions and even those from me were terse and robotic.

Neurology, infectious disease, nephrology and the BMT home team all came by and scratched their respective heads thinking about overdose of sedatives, viral encephalitidies (brain infection), a reaction to the experimental antiviral drug, bacteremia (in blood), a blood clot on the brain (caused by or causing the fall) …

Mysterious confusion

Saturday afternoon, I thought about what could be causing such a catastrophic confusion yet be so invisible. 

Wernicke’s encephalopathy with acute confusion, paralyzed eye muscles, ataxia (poor walking coordination) is often seen in chronic alcoholics but also in malnourished and a few BMT patients.  It is due to B1 thiamin deficiency.  I discussed this with the team and they started 50 mg IV thiamin.

Last night and today was one of my lowest points in Teri’s whole illness.  My viscera were sucked into that black hole when all hell is breaking loose and all control has been lost.  Teri was no longer recognizable as the person I knew.  In my sky is falling tendency, what if she became permanently disabled?  What if she lost her joie de vivre and ability to interact with family and friends?   What if she was no longer herself?  I realized that this despite all we’ve been through, this was perhaps the most devastating possibility, that Teri could survive cancer free but no longer remain who she is.

I shed tears for the loss of my Teri.  I notified our immediately family.  I spoke to her and received automaton responses.  I hugged her without recognition. 

Although not permitted to eat, I argued that she should.  They changed the order and I fed her this evening.  “It is delicious.”  The food seemed to calm her down.  She began to talk more coherently about how she was willing to go on a bedpan now that she is connected to both IV and numerous EEG (brain wave) leads. 

At bedtime, she even asked to give me a hug and said “I love you.” 

A hopeful sign of recognition.

BMT Day +137 Recovering her self … a little facial … the exhibit

Yesterday entailed a 13 hour long stay at the Day Hospital for dressing change (like a burn dressing), blood draw for labs, IV platelet infusion, IV potassium infusion and a change of both neph (pronounced neff) tubes in her back by the interventional radiologist (IR).  The nephrostomy tubes have now been in place 3 months and 2 days … hoping they are only required another month.

The change in nephs went smoothly, but the new IR protocol recommends flushing the tubes daily, whereas the original urology protocol recommended not flushing them at all.  Complete agreement. 

Here is a picture with her post-operative recovery smorgasbord after a 10 hour fast.  In fact, she is often ravenous and is beginning to eat every two hours and gets cranky if food is not within arm’s reach.  This baby thing could get old.

 

Last night I administered the last dose of IV meropenum which means Teri is officially free of twice daily home infusions.  Another mini milestone passed!

Recovering her self

This week we witnessed a major change in Teri. 

Several weeks ago, the oncology team expressed optimism that Teri may be cancer-free, based partly on her clean bone marrow at 100 days post-BMT and partly on the 7 month relapse-free period since her last round of chemotherapy.  You may recall that the first remission lasted only 4 ½ months.  We have begun to cautiously and tentatively embrace their optimism.

But, my question has been who the new reborn Teri will be.  Will she be like the 2010 model.  Will she be different.  Much of the past 17 months has seen immense pain etched in her furrowed brow, more tears than flow in the Yangtze, complete depletion of her expressive energy, loss of all curiosity about the outside world, loss of her woman-in-charge independence and all bodily autonomy, and a depressed mien and apathy that I had never encountered in 39 years.  Who will reemerge from this harrowing cancer-transplant miasma? 

This week, Teri began to act like her former self, at times over the top.  “It’s a wooonderfulll day.”  “The food is deeelishush.”  Playful, humorous.  Exceeding warmth towards other with a welling of tears.  Opinionated, decided.  Concerned about my father, his health, his well-being.  Making decisions.  Engaged in e-mail once again.  Answering her phone and calling others once more.  But it is up and down.  Today was down.

I got my answer this week.  Grace is my witness.

Today, for the first time in a month, I listened to my two comfort Kim Water’s tunes that have kept me going through the most grueling times.  I noticed that I didn’t need to clutch onto every single wailing note as if its ethereal vapor could lift me above the pain and uncertainty.  The songs are still great … but didn’t carry the poignancy of listenings past.

A facial massage

Teri reached out while she was lying down and gave me a light facial massage.  I realize that it has been more than year since she reached out to me to heal me.   It reminded me how one-sided this partnership had been.  For so long. 

The Emperor’s Private Pavilion

The Director and museum staff were extremely considerate of Teri’s needs and opened the special exhibit on the Forbidden City to her before the public was admitted to allow some untrammeled time alone with these incredible objects.  We took an audio tour. 

We appreciated it even more during the quiet window.  The entry ways, wall panels with cloisonné and gold, furniture/thrones with gnarled root, clocks, portrait and palace life paintings, elegant calligraphy, scholar’s rocks represent the Emperor Qian Long’s highest aspirations.  He wrote the calligraphy and designed many of the objects which were made by the most accomplished artisans for his own private use.

We are in front of the side exhibit Emerald Mountain Ink Paintings of the Chu-tsing Li Collection.  Below are a few of the displayed paintings.

Linda got stranded in Minneapolis and the Mall of America.   Donna came and visited.  Kari came and gave a massage to niece Grace. 

We are ‘stranded’ at home on this 4^th, but our vistas … are widening.