BMT Day +105 Coming home … decision … music

Teri came home on Saturday afternoon!

A local friend Jody who helped with transport logistics, massage, and groceries.  We are back in the home routine of IV medications twice daily, and oral medications three times a day, some before food, some with fat.  Teri takes an appetite stimulant progestin which has helped her to eat and snack after midnight. Her taste buds have been altered by chemotherapy and many foods either taste off or too spicy but the one constant is pureed watermelon, which apparently is high on post-chemo proclivities. 

Paul and Dean came from Madison and brought Vietnamese bun (cold salad noodles) and won ton noodles and brought old video memories on Sunday.  You see, Paul was the ringleader of our merry band of pediatric residents cum SNL wannabees who put on annual skits ridiculing the faculty and all things medical.  He brought a super 8 mm (Neanderthal format) movie shot in 1978 called Star WarDs in which Steve, Kok Peng, and B (bearded) played star raving wild and crazy guys – did we really look and act like that?

Status report

Despite being ‘out’ of the hospital, we are stuck in a nearby orbit with re-entry to the Day (outpatient) Hospital at the Cancer Center on Sunday (blood work), Monday (blood work, platelets, 2 units of red cells, and KCl – 8 hours), and Tuesday today (blood work – 11 tubes, clinic appointment, albumin and lasix infusions).  Everything lab-wise is improving, white cell count (4,100), kidney function (Cr down to 1.5 from 2.1), and liver functions normal (but bilirubin still > 2.0), but her CD4 virus-fighting lymphocytes are still slow to grow.  Alll good news.

              

Teri still doesn’t feel good physically.  The problem is edema (swelling) stretching her abdomen pregnant-like and legs Michelin-like.  The team today estimates 6-7 liters or 13-15 pounds are retained in her abdomen!  Her foot has a new egg-sized blister and she has outsized all her shoes.  The only pair she can fit into is my unlaced running shoes.  We did ‘emergency’ shopping yesterday for open-backed shoes that at 2 sizes larger than normal (+ wide) are a tight fit.  Monica helped find pants that stretch from 32-48”.  The plan is to use IV albumin (protein) and lasix (diuretic) to remove fluid and abdominal paracentesis (abdominal needle) to remove fluid from the abdomen.

The decision

Teri, influenced by her recent complication that landed her in the MICU and the interminable hospitalizations, told me that she does not ever want to return to the hospital as an in-patient.  In fact, she said she will refuse to be readmitted.  I asked the ‘what if’ it were a reversible infection?  She said no, she was adamant.  I hope we don’t have to come to that river.

The music that kept me going

There were two songs that carried me through the worst of her hospitalizations.  I played them over and over repetitiously on my way home after a hard day’s night.  Both were on the album Love’s Melody by Kim Waters, a tenor saxophonist.  “Easy Going” (track 4) with a Spanish guitar reminds me of Teri’s innate gentle spirit and warmth, and the wailing saxophone on “Two Hearts of Mine” (track 9) recalls the times we slow danced together.  

BMT Day +101 Regaining her voice … some come closer, some stay away

Three good days in a row!

In reprocessing the harrowing memories of her week in the MICU with the psychologist, it has become clear that being intubated and placed on a ventilator was unequivocally the lowest point of Teri’s entire 472 day ordeal.  Through the 236 days of hospitalization, in her weakened state, she had progressively lost her autonomy.  She was placed in isolation disallowing free access.  She required help to walk, to go to the bathroom or commode, to get into bed, to get drinks, even to feed herself.  Yet in the MICU, tethered to the bed by hand restraints, arterial and central venous tubes in her arm and neck, and an ET (phone home) and NG tube in her mouth, she lost her voice, the last vestige of autonomy, her ability to express herself.  That was the last straw.

When her voice came back, it was at first inaudible, then progressively raspy, and weak, now has a forced hoarseness.  But she is regaining her voice and with it her self. 

Some come closer … some stay away

Some of our friends and family have become incredibly supportive throughout this ordeal, both in spirit and in presence, in ways we could never have anticipated.  Some did so even when they didn’t know Teri or I that well ... I don’t know why exactly.  It has been remarkable to me that even the next generation (nieces) have wanted to be here and now for her. 

Some have drifted away.  I also don’t know why without asking.  But I do know, from my own experience, that it is simply hard to come daily and observe immense pain etched into Teri’s face, a body totally ravaged and distorted by cancer, and a psychically-depleted person devoid of spark that I barely recognize.  Most of all, being with Teri is a stark and disquieting mirror to our own vulnerability and mortality, in which one fragile life can be snatched away, and that image of ourselves as we know it can dissipate in an instant.

BMT Day +100 100 day milestone … no more Pinocchio … HOME on Saturday!

Today Teri passed the 100 post-BMT day which marks the end of the period of highest risk of complications and mortality in a BMT.  A major milestone.

No more ‘Pinocchio’ as Teri says! 

Although she was fretting the declogging procedure for the NJ tube, she bargained with the team to have it removed altogether if the interventional radiologist was unable to clear the line.  After multiple unsuccessful attempts with various guide wires and fluids, the accessory nosepiece was removed.  Teri is free of her proboscis!

Walked 2,300 feet and 2,530 feet the last two days respectively.  She ate 1600 Cal for day two days straight – without the tube feedings.

Entire change in disposition: 

-          Joking with doctors:  We are going to take another bone marrow tomorrow – is that OK?  Teri: “No.”  Is there anything I can do?  Teri:  “Yes, take my place.”

-          Singing ‘eeee-eeee-eeee-eeee’ to Jack on skype – ‘light opera’ as she says,

-          Needling me about everything:  “Since you have selective hearing, you need to buy a baby monitor so you can hear me call you from the bedroom.” 

-          Saying silly things:  “Teri:  I’m on the farm picking [my dead, chemo-darkened skin.]  Jeanine:  Nothing is edible on your farm.  Teri:  Yes, my field seems full of bugs.”

Edema is a bit worse.

Told she may be able to go home on Saturday following a bone marrow aspiration tomorrow on Friday!

BMT Day +98 The straw that almost broke Teri’s back

Yesterday, because of continued right-sided pain, causing Teri to yelp aloud, she underwent a CT scan to augment the ultrasound from the day before.  As has been her pattern, there was good news = no abscess or nephrostomy tube leakage – and bad news = a new infiltrate in her left lung, likely an infection.

The oncology team proposed that she undergo a bronchoscopy (a scope passed into the lung) to obtain a diagnostic sample today.  Two pulmonary fellows came by to do the consult but she turned them away.

This was the straw that nearly broke Teri’s aching back.

Recalling her recent debacle from an endoscopy (stomach scope) that led to a complication and a horrifying stay in the MICU, she was frantic about triggering another downward spiral: 

“Why is there always another complication around the corner?”

“My body is no longer my own, complications and doctors control all of it.”

“I can't go through another procedure.”

“I refuse the test.”

“I want to stop all treatment!”

Yesterday, she wouldn’t walk or eat.

I called her primary oncologist and asked whether the team could modify their approach, make their best judgment as to the potential bug and change in antibiotic therapy without the bronchoscopy, and first see if she responds, especially since she was not that ill.  Her oncologist was agreeable to a compromise. 

It gave Teri a sense of control, of relief, and a chance to continue her recovery.

Today was a better day. 

Teri walked 1840 feet, another milestone.  She ate more though nonsustaining amounts of food.  She asked for the first time to be wheeled outside the ward down to the cafeteria where she ate all bundled up, masked, NJ tube protruding, and hands gloved.  She is a trooper.  Her CMV viral particles are now < 1000 – under control! 

She started on an experimental antiviral CMX001 to tackle the relentless BK virus that has caused 2½ months of continuous bleeding, bladder cramping and suffering.  Of note, this novel therapy was proposed by the head of nephrology, an expert in BK virus, and required emergency FDA approval.  It has a good side effect and drug interaction profile.  It just so happens that he is a close friend of Roy and Bobbie, our down-the-hall neighbors in Chicago and good friends – a mere 2 degrees of separation away – small village. 

However, challenges continue.  Teri’s NJ tube got clogged and will be rotorootered tomorrow.  Her kidney function worsened slightly.  Her pleural (lung) effusion (fluid) and ascites (abdominal fluid) and leg edema are worsening partly due to the excessive fluid load required to administer foscarnet.

Jeanine (niece from CA) came last night for the next shift.  She is an experienced and insightful cancer support person having done so for her cousin and her mother-in-law.  She said exactly the right things to Teri.  She is not afraid of cancer.  She is not afraid of end-of-life discussions.  She is great to have here.

BMT Day +94 Steady progress and a what if

Making real progress

Teri walked 690 + 230 feet today, a new post-MICU record.  She ate ¼ piece of French toast.  She is continuing to have more bladder spasms with the increased bleeding from the kidneys and bladder that is disrupting her quality of life.  To better eradicate the BK virus and reduce the renal bleeding, she is being restarted on ciprofloxacin and cedofovir, and the infectious disease team is applying for compassionate use of a new unreleased antiviral agent. 

Without trying to jinx her prospects, they are discussing home going at the end of next week!  But the team insists that she eat in order that they can remove the NJ tube prior to discharge.  However, having been through one discharge on 4/5, followed by inadequate intake at home, ensuing malnutrition (kwashiorkor), edema (swelling) in lungs, abdomen and all tissues and the resulting downhill spiral of complications… I proposed that she go home with the feeding tube to allow full nutritional restitution during the several weeks I suspect it will take for her to resume full eating.  She needs some meat on her bones.

Why viral challenges now?

Teri only has a few CD4 lymphocytes to combat the many viruses that we harbor quietly and unaware in our bodies such as herpes, CMV, BK.  However under immune compromised conditions, these latent viruses can erupt as has happened.  The antivirals are containing most except for BK until her naïve lymphocytes (from the unexposed baby) become armed and on target.  In children, this happens quickly because of an active ‘sargeant’ thymus gland.  In older adults with an involuted thymus, this happens very, very slowly and the unarmed and undirected lymphocytes remain for months.  

What kind of help does Teri need?

Many, many family and friends are helping on a continuous day to day basis.  Jody and Michelle came today.  Quite remarkably, when we added it up, Tony her brother who left today, takes the prize … he has been here altogether 9 weeks in four trips since the beginning of Teri’s illness – a yeoman’s effort!  We thank you all!

For those who are yet to come, what does Teri need now?

Help with walking/walker, strengthening, and stretching.  Help with getting food, drink, meds, and eating.  Putting cream on.  Mini-massages.  Sharing stories, memories, music…  Letting her nap.  Most of all, listening closely to her because she knows what she wants even if she can’t express it clearly.

What if?

As I catch my breath and relive what we’ve been through in the last year, I pose another unanswerable question.  What if the price of survival from the chemotherapy and BMT was that you could not resume your former personality or regain your former body?   

In fact, that is some of what Teri may be going through.  We don’t realy know how she will come out in terms of her overall health, functionality, mental capacity and most importantly her omnipresent joie de vivre and love of friends and children.  We know she cannot help but be changed by this, but how much so from the Teri we have known, we don’t know, yet.

BMT Day +93 Definite steps forward … recalling the MICU experience

Medical report

Teri is only one week out of the MICU (medical ICU).  Initially unable to walk, she began to walk 50, feet, then 230 feet, then 230 feet twice a day, and today a giant step to 690 feet.  She is undergoing PT (physical therapy – walking and strengthening) and OT (occupational therapy – self care).  She is eating and drinking sparingly, mostly pureed watermelon and some fluids.  She needs help with feeding, walking, bathrooming ...

Teri’s WBC count ranges from 1,700 and 3,500 (normal > 4,000).  Her hemotocrit (red cells) varies from 23-31% (normal > 41%) and her platelets run from 17,000-34,000 (normal > 150,000).  She receives platelet transfusions every other day and red blood cell transfusions every 5 days.  Her albumin (protein that helps retain intravascular fluid and prevent edema formation) is now 3.4 (normal > 3.5) as a result of continuous nasojejunal Nutren (nutritional supplement) feedings.  Her urine has become bloody again from the BK virus.  Her CMV viral particles have plummeted from 90,000 to 4,000 in response to IV foscarnet.  It remains unclear as to whether she has nephrotic (kidney leakage) syndrome or not.  The good news is that the nephrologists have decided not to do a kidney biopsy through her back.  We don’t need to flirt with any more complications.

Yesterday Wednesday was a quiet day, medically.  Many rounded – BMT, infectious disease, nephrology, psychiatry, PT, OT.  However there was one procedure – another (3^rd) paracentesis performed under ultrasound guidance – to remove 4.5 lbs of fluid from her abdomen through her abdominal wall.  They seal the puncture site with cyanoacrylate (super glue).

Recalling the MICU experience

Teri spent time during the last several days exorcising memories of her MICU experience with two of her favorite faculty – oncologist and psychologist – much of it awash in tears.  I had no appreciation how aware she was while sedated and intubated there.

-          She felt isolated and disoriented despite knowing that she was in the MICU because she didn’t know what floor, where in the hospital and what direction she faced (her bed faced away from the window).

-          She was tethered to the bed by the ET tube in mouth, PICC line in elbow, arterial line in wrist, central venous line in neck, NG tube in mouth and most of all by restraints to her wrists and ‘boxing’ gloves on her hands to prevent ‘harm to herself’ by potentially pulling out lines or tubes.

-          She was frustrated by the inability to communicate even by mouthing words around the tube, outlining letters on the blanket, writing letters on a pad, pointing out letters on an alphabet card.

-          She felt a complete loss of autonomy and privacy requiring a bedpan, requiring assistance to scratch an itch, requiring a nurse to change positions in bed, and requiring us to put Vaseline on her dry lips …

-          She felt one nurse mistreated her without recourse.

-          All in all, It was a horrific experience that she remembers.

Teri is definitely improving.  She is having wartime flashbacks.  She is regaining her self.  She is sad that Tony her brother is leaving tomorrow - he has spent the most time with her of anyone other than me and comforted her through her lowest phase.

BMT Day +87 Turning around … in her own words.

Teri has begun to be Teri.  For the first time since the transplant on 2/15/11 three months ago, I can see that she has begun to regain her self, her spirit, her zest, her humor, her feistiness.  

In her own words today

“I don’t remember too much of what has happened this admission.”

“I was at my very, very, very lowest point during this admission.”

“I didn’t know if I had the strength or will to survive this admission because it has simply been too long, over a year.”

“This admission, I was completely carried along by others, by you, my [medical] team, family and friends who came [to support and comfort me].” 

Teri will start on NJ (nasojejunal tube) liquid feedings today.  She is allowed to eat but is not able to eat much.  She vomited last night.  She walked 50 feet for the first time in two weeks with the physical therapist.  She has a new problem – nephrotic syndrome – with substantial losses of protein through the kidneys.  The cause is unclear and further test results are pending.

Teri was visited by two special members of her medical village including one oncologist and one oncology fellow who have taken care of her in the past and with whom she has become close.

Today, I see the person I have known who has rediscovered her will to go on.

BMT Day +86 Out of MICU … what is one life worth?

Teri was transferred from the medical intensive care back to the BMT ward late yesterday afternoon.  The BMT nurses thoughtfully moved Teri to an outside room where her bed faces my office and she can see signs of encouragement that the GI nurses and fellows have placed in the office windows some 200 yards away.  It was good to be back … to the quiet familiarity of the BMT ward.

Teri’s post-tube voice is still raspy, almost audible, she can stand for a minute, and is now allowed to take clear fluids after a swallowing evaluation.  Her taste buds are running heavy metal.  Her skin is mahogany colored from chemo that stimulates melanocytes (tan), and has healing blisters overlying pruned skin from the resorbed edema.  She is intermittently confused especially as to time. 

Teri’s urine is collected from her ‘neph’ (nephrostomy) tubes into two clear bags and is finally turning from red to yellow.  Her nutrition is yellow–colored intravenous TPN that runs 24 hours a day.  Yellow input … yellow output.  Yellow woman in yellow harmony. 

Teri has a nasojejunal tube i.e. a long piece of hollow spaghetti that traverses the nose, esophagus, stomach and into the small bowel to bypass what appears to be a paralyzed stomach (gastroparesis).  It will be used for feeding.

Teri brightened up considerably today – the first time in nearly four weeks - smiled, made eye contact, playfully interacted with the doctors and got them to laugh.  Her big thing today was how she fashioned (with scissors) stylish arm warmers out of hospital sox, like those that cyclists wear, to keep her forearms toasty.  A soxy fashion statement. 

Teri is starting to regain her moxie.  In fact, she began to get a little feisty.  She ‘ordered’ Tony and I to go buy a hand mirror and emory boards.  Hmmm, can a makeover be far behind?  We were afraid she might crack the mirror, whether by self-reflection (only in fairy tales?) or blunt force trauma.

She was seen today by:

BMT nurses – many

BMT nurses aides

Central line nurse

Oncology physician’s assistants – 2

Oncology fellow

Oncology attending physician

Primary oncology attending who has overseen her care from the beginning

Infectious Disease attending

Psychiatry attending and resident

Respiratory therapist

Physical therapist

Harpist who played for 45 minutes

Rabbi

My father and his caretaker

Tony (brother)

Those are the ones I was around for.  Several of the doctors who have followed her over time and tribulations clearly adore her and vice versa.

What is one life worth? 

This is one existential question that percolates up to the surface from time to time.  In cold hard currency, the nearly daily itemization from Principal Insurance documents the catapults toward the maximum lifetime benefit of $2,000,000.  Thank God for Obamacare.  In human terms, the immeasurable and unfathomable suffering that Teri has experienced cannot be counted or accounted for in a pain/suffering-to-benefit analysis.  And we have no guarantees of success … we began with a 30% chance of a cure. 

The family and friends who have come to help have also provided their own perspectives below. 

When I asked her older sister Terri (ardent Catholic) to what she can liken Teri’s leukemic and transplant experiences, she said “like going through hell”  Although Unitarians don’t have the same dichotomous concept of heaven and hell, I felt exactly the same as her.  At least, I wouldn’t wish Teri’s experiences on even my worst enemy.

When I asked her older brother Tony if, after having observed at close hand (four visits) Teri’s hospital stays, procedures, complications, pain, and suffering, he would choose to go through a bone marrow transplant in the same boat, he said simply “No!”

When I spoke with Steve (my best friend), who always asks after my well-being, he stated that my serum cortisol (stress hormone) level, if measured, must be sky high.  I know it to be true.  Yet I don’t really want to know.  The wear and tear on me, Ben, Rachel and John, my father, has not yet ended ... 

So, I don’t have the answer to the question.  I think we may have an initial answer looking backwards at some point in the future when we have a tentative outcome.  For now, I only know that Teri is pushing the outer limits of health insurance benefits and of human suffering.

BMT Day +83 Baby steps but still in MICU

21^st CENTURY HERE WE COME – A REAL OFFICIAL BLOG SITE.  Thanks to Teri’s niece Jennifer (Tony’s daughter) who just left, we have terikickingbutt.blogspot.com with archived old postings, not just a bunch of e-mails.   You may comment.  You may communicate.  You may network.  You may check out other sites.

I have to brag that Jennifer teaches English (Asian American specialty) at UNC Chapel Hill and, besides publishing her first book, writes a provocative blog entitled “Mixed Race America” which is on the right column – above vomiting – that contains her multilayered musings on issues of race.  She thoroughly challenged my thinking on race.

Teri had a better day!  The endotracheal tube was removed – Elena watched her pass that milestone!  She is still unable to walk or to eat and speaks in a barely audible whisper.  But she is more expressive through her weary face than at any time in the last 3 weeks since being admitted.  Is it the thyroid, the antidepressant, the Ritalin, the improvement, your prayers … Memee and Ann drove from Madison to bring warmth and food for both her and us (Tony and I). 

Her new problems today included persistent leakage from the paracentesis site where abdominal fluid was removed and bleeding from the lower bowel.  She underwent an emergent sigmoidoscopy – fortunately normal – in her room. 

Dad was dressed and packed standing by the elevator ready to fly to Hong Kong this evening.  His caretaker and I talked him back to his apartment.  His intention is to visit a special new leukemia hospital built in Guam.  Good intentions can lead one afar.

Baby steps are for babies.  In fact Teri’s marrow is > 85% umbilical cord and < 15% Ben.  So maybe this baby pace is to be expected.

BMT Day +82 Still in the ICU, but improved

5/8/11

Teri is improving – thanks again for your long-distance input – but remains intubated on a respirator which is set to an assist mode where she initiates the breath and it helps her take a full breath.  She was on 100% oxygen the first night, but was weaned to 60% by Friday, 50% Saturday, and 40% today.  Her left lung was greatly diminished initially but opened up by the next day.  However, the pleural effusion (fluid around the lung) remains and also the abdominal ascites (fluid in the abdomen) are causing enough pressure to restrict both lungs from fully expanding.  Today, they removed 3.5 L (7¾ lbs) from her abdomen.  Tomorrow, they plan to remove additional fluid from her lungs and hopefully extubate her (remove the breathing tube).  During the hypoxic period (lack of oxygen), both her liver and kidneys suffered some damage, which should recover.

This episode of acute respiratory failure was a complication of upper endoscopy (to look into the stomach) during which she aspirated gastric contents that immediately compromised her left lung and caused necessitated intubation and a respirator.

One of the most challenging aspects yesterday was communicating.  In a shaky script, she wrote letters on a piece of paper CWWWW IIIII.  She inscribed them with her finger on her blanket.  She mouthed them.  She pointed to IIIII OOO on an alphabet card.  She wrote OOP and I I I I again.  She answered our questions yes or no.  But the three of us plus the nurse and respiratory therapist could not make an intelligible guess about what she wanted although we eventually determined that her abdomen was causing her more pain.

I shed tears on Thursday when Teri was transferred from the BMT ward to the MICU (medical iCU):

- for Teri’s immense and prolonged pain and suffering

- for Teri’s even greater loss of autonomy, being unable even to speak or communicate

- for Teri’s fear that this could be the end

- for my being overwhelmed

Ben was here to support me through the initial difficult hours.  Brother Tony from CA arrived on Friday.

BMT Day +79 Admitted to the ICU on Cinco de Mayo

5/5/11

Teri was admitted to the ICU 3:00 pm today after an endoscopy to look at her stomach.  She was hypoxic (inadequate oxygen in her blood steam) and needed to be intubated (breathing tube).  We do not have enough details to know what exactly the underlying problem is but it is serious.

It has been a rough 12 days …

-          Depression → antidepressant, improving

-          Poor oral intake and malnutrition (kwashiorkor) → nasogastric feedings

-          Anasarca (total body swelling) accumulated 33 lbs of fluid – 23 lbs removed with albumin and furosemide infusions

  o       Ascites (fluid In abdomen) → paracentesis (needle to remove 6 lbs fluid)

  o       Pleural effusions (fluid in lung cavity) collapsing right lobe → oxygen

  o       Blistering of her skin from anasarca

-          Distended, filled stomach → endoscopy

-          Abdominal and chest pain from the above

-          Positive PICC line culture → antibiotics, changed PICC line

We had tremendous support from Terri (older sister from CA) and Jennifer (niece from NC).  Ben is here.

Teri has the heart of a tiger but is wearing down.

Perhaps more than at any time in this 15 month ordeal … we need your support, thoughts, prayers …

Unfortunately a return to the hospital (Room 4NT14 and a side effect

4/23/11

BMT Day +67

Teri was at home from April 4^th to the 19^th.  Her energy level (long 2-3 hour daytime naps), appetite (bites, half bowl of soup and protein shakes) and strength (mostly with the walker) were improving slowly although not near her pretransplant level.

Since last week’s blog on 4/16, Teri had been spending 8-11 hours every other day in the Day Hospital (infusion area in the outpatient Cancer Center) receiving IV platelets, red blood cells, immunoglobin and cedofovir.  Unfortunately, the platelets were only lasting a 1½ days falling from 45K (normal 150K-300K) to 7K.  This lead to increased numbers of passed clots that would trigger more the dreaded bladder spasms!!  Dr. H. recommended readmission to gain control of her bleeding by daily platelet and blood transfusions.  Teri had refused earlier given the spectre of her last two 80 and 54 day stays in isolation.  He assured her this would be a shorter one.  She cried.

No admitted, over a 24 hour period, Teri became acutely confused (couldn’t operate her phone or call button and misrecognized Grace for her sister), with a dramatic loss of energy and affect (even skyping with Jack did not perk her up).  Her medical parameters remained stable or close to normal.  Grace and I helped walk her to the bathroom, prepared comfort food, spoon fed her, and tried to orient her.  We did not understand what was happening.  The whole attending team came in and finally hypothesized that she was probably having a specific reaction to Probenecid (used to increase her cedofovir levels).  We waited a night and, thankfully, she gradually became clearer.  We were not surprised when they also suspected emerging depression that had only arose after a year of harrowing hospitalizations.  Several of the team commented that many experience this earlier and Teri’s belatedness development was likely due to her inner strength and positivity.  She is being started on treatment that may take several weeks to become effective.

Her niece Phyllis (IA), Becky (NJ) and niece Grace (CA) all came for extended periods over the last two weeks and provided incredible support, food, treatment administered with patience, gentleness, and loving care.

At this point, Teri is still very weak and sleeps a lot.  She is unable to speak on the phone or respond to e-mail for now.  We read her your cards.  She always appreciates your telepathic thoughts, promising prayers, and relayed Reike.  Please continue to send them during this critical period.  Her oncologist remains optimistic about Teri’s long-term outlook but poor Teri cannot see beyond each of these 6 foot high speed ‘bumps’ to see the beacon at the end of the tunnel.  As Susan writes, that light is definitely –not an oncoming train!

BMT Day +60 Home sweet home … but no cake walk

4/16/11

Teri came home on Monday April 4^th after 54 days in the hospital.  The first 100 days are critical, with the highest risk to survival.  We are half way there.

You can’t believe how important milestone that is … after nearly a total of 6 months of hospitalization in the past 13+ months.  Teri was literally going stir crazy in isolation!  She barely looked out the window to see the emergence of spring.

MEDICAL PICTURE

The viruses are part and parcel of the post-transplant gap in immunity and are the cause of her suffering.  The unrelenting hourly 24/7 bladder spasms from the BK virus in the bladder and kidneys is similar to passing a parade of kidney stones – it may go on 3 months altogether.  The key tipping point was the placement of the nephrostomy tubes (back) to drain the urine from each individual kidney which relieved the obstruction to the ureters, reduced the hydronephrosis (dilated kidney collection system) and resolved the kidney failure, and, most importantly allowed her to get some rest and be discharged.  In her pain-, sleepless- and narcotic driven-fog, she couldn’t glimpse any light at the end of the tunnel. 

Yet the ‘big picture’ as the doctor’s say, inferring that Teri’s suffering above is the ‘small picture’, is an optimistic one.  She has engrafted from both Ben’s and the baby’s stem cells 50:50.  From engraftment, her marrow (garden) produces white cells, albeit they are too immature to help her fight off the viruses.  She is not producing red cells or platelets yet.  Also, she may have dodged graft-vs.-host disease for which she is at high risk where Ben’s or the baby’s  lymphocytes (white cells) attack her own skin, liver and intestinal tissues as if they are foreign, unrelated!  The team is optimistic that her own cancerous stem cells may have been wiped out.

HOME AT LAST

Returning home was a quiet affair without fanfare.  Rachel and Jack just left. 

Teri came home with 20 medications, two of them given as one hour IV infusions.  She walks with a walker borrowed from my father.  She sits mostly in a recliner surrounded by medications, drinks, IV supplies, emesis basin, get well cards, extra blankets and of course pictures of little Jack.  She sleeps a lot, now in 3 hour stretches with 1-2 long daytime naps.  She eats little, due to post-chemotherapy metallic taste, nausea and some vomiting.  She receives Reike for energy rebalancing, TENS stimulation for pain relief.  Eating, bathrooming, bathing, walking is slow, deliberate action great effort and required patience.  Certainly much more work than when she was in the hospital.

Although we are home, we spend 10-11 hours every other or third day at the Hospital in the Cancer Center getting lab work, doctor/physician assistant visits, and receiving IV cedafovir, IV immunoglobulin, IV platelets and IV red blood cells.  So it feels like home at least half-time, but at least her own bed to sleep in, without IV beeping, nighttime vital signs, night time lab work, hallway noises, code 7 calls, changing IV bags to arouse her hourly.

IT TAKES A VILLAGE …

It takes a village to care for someone with acute leukemia or aggressive cancer.  Since the doctors said she must have someone with her at all times, I’ve had to rely on neighbors, friends and family, a lot.  About 10 days prior to discharge, we were told that her slow recovery from kidney damage would delay discharge to the end of April.  Once the neprhostomy tubes were placed, the timetable accelerated to the beginning of April.  Our dear friend Sandy made many phone calls to neighbors while Rachel helped organize coverage for Teri’s return.  Friends, Sharon, Becky, Michelle, Linda, Sue, and especially Sandy have all pitched in at home or hospital so I could cover my clinics, shop, etc.  Phyllis her niece from IA and Becky her friend from NJ have spent days comforting, laundering, cooking, cleaning, healing, sharing …  We have other family or fly-in friends lined up to help until the middle of May.  We have found with Teri’s limited capacity that it takes two of us to manage all.

B

Many have asked how I am doing.  I am sometimes too numb to say.  I am tired.  It has been a long 14 month haul with constant challenges.  I am reminded of a classic Japanese movie Woman in the Dunes in which a man is trapped in a sand pit shoveling reaccumulated sand.  Each day, I start over with déjà vu organizing her morning and evening medications, her food and supplements, her IV medications, her PICC line flushes, her TENS treatment … it seems neverending. But I am able to visualize the light shining ahead.

INSURANCE

On Thursday, we received news that MCW had decided to cover her first autologous (self) stem cell boost (transplant) and chemotherapy (altogether > 100K).  We had been preparing another challenge to the third and final insurance denial.  This is a whole other story in which we learned about the seamy underbelly of self-insured health plans (conflict of interest between insurer/employer and employee needs) and that the approval for BMT in minorities is stacked against minorities because only a few find a matched donor and fall off the matched donor ‘standard’ transplant track onto the ‘experimental’ deniable track.  A whole other discussion.  This insurance hell on top of medical hell has at times been too much to deal with.  Our lawyer, fellow faculty, friends and oncologists all gave us support and strategic help.

BOTTOM LINE

Teri is gradually recovering, and now has a real chance to beat the leukemia.  Since her transplant, we met several individuals who have been transplanted with a perfect 10 of 10 matched donor stem cells ... but didn’t engraft, and now, after the leukemia returned, can only receive palliative care.  We daily realize how lucky or unlucky one can be throwing the transplant dice for one’s life stakes.  We are fortunate in Teri’s roll that she is alive and has a real chance due to God’s grace, your prayers, thoughts, healing and help, our medical team, Teri’s fortitude and plain karma.  We are fortunate ... and thankful.

BMT +43

3/30/11

We have had many ups and downs over the past few weeks but are taking things one exhausting day at a time. 

On the positive, Teri’s WBC and ANC counts have climbed to normal levels (as high as 7100) as of a week ago.  Both Ben’s cells and the baby’s umbilical cord are actively growing 50/50 each in her marrow based a chimerism assay on her bone marrow biopsy. 

However Teri continues to fight three viral infections – a common problem during haploidentical transplants – causing excruciating pain and suffering from the oral ulcers and hourly bladder spasms literally 24/7 for three weeks. 

The bumps in the road continue.  On top of the continuously bleeding from the bladder, she developed hydronephrosis (swelling of the kidney collecting ducts) of both kidneys and kidney failure from her antiviral agent foscarnet (BUN 92, Cr. 2.0).  If her BUN exceeded 100, she would have to begin hemodialysis.  Fortunately, it began to improve yesterday.  However, the swelling of her ducts worsened and she underwent bilateral nephrostomy tube placements yesterday afternoon so has two tubes placed in her kidneys draining through her back into two drainage bags.  Despite how gruesome this sounds, even though we still see bloody urine, it has allowed her bladder to rest for the first time in three weeks and she is beginning to get more than 1 hour of sleep.

One never ceases to be amazed at the delicate fabric upon which Teri rests and the imbalances that can result from pulling off one end of her biological blanket, namely her immune system. 

What comes next?  Her five IV’s were stopped today …  Today, her attending physician said if Teri can eat over 1000 calories per day and can walk on her own, she will get to come home soon!  Incroyable!  I don’t think she really believes it yet.

What do we need?  Teri and I are all depleted physically and emotionally by these recent trials.  I would like to ask for help in taking care of Teri in the next two-three weeks once she comes home.

Visitors:

Uncle Tony visited for three weeks providing support for both Teri & B.  The last day of his stay overlapped with the first day of Rachel & Jack’s visit.  Because of the 15 immunocompromised patients on the ward (different from the adjacent ward where she spent her other hospitalizations), babies and children are not permitted in the rooms.  This means that Teri must come out of the ward into a separate exam room to see Jack.  Because of her constant pain, this was physically taxing for Teri to sit in a wheel chair but emotionally uplifting to see Jack.  Since she last saw him, he has changed so much.  He is now rolling, grabbing and babbling non-stop.  He smiles especially at grandma, continues to watches her every move when they are together, and holds onto her fingers ever so tightly.  

Little Jack has also stimulated a bonding across 90 year span in great grand pa.  He is fascinated by Jack and will play with him for an hour.  We were surprised when he picked up Jack while Rachel was not looking.  Fortunately, despite our belated worries, nobody was injured in the process.

Rachel & B

BMT Day +32 Some breakthroughs … improving but still suffering

3/19/11

Teri’s week as it appears on her erase board:

+25    WBC   800    ANC = neutrophil count (neutropenia or low count < 1000)

+26             800             460    Continuous hematuria (blood in urine) – catheterized

+27             1100           690    Phyllis: Reike, healing touch, teaches us to do TENS

+28             1200           830    Teri begins to walk again

+29             1600           900    Bone marrow biopsy and aspiration, ultrasound

+30             1600           920    Oral herpes begins to improve

+31             1500           960    The biopsy shows engraftment, probably from Ben

+32             1700           1190  Not neutropenic … salads & restaurant food yeah!

A lot of progress! 

The oral mucositis with herpes on top is improving despite a previous concern that it was resistant to the antivirals.  Benzocaine topical gel is Teri’s best friend.  She has hunger, but still eats only sparingly and remains on TPN (IV nutrition).    

The BK (Burger King for want of a better name) virus continues to cause continuous hemorrhaging and hourly bladder spasms 24/7.  It has been tough to get sufficient sleep now up to 2-3 hours at a stretch.  The catheter doesn’t stop the spasms, but prevents her having to get up to go.  She remains on a continuous narcotic drip and two antibladder spasm medications. 

Teri says:  I[m waiting impatiently[for the bladder pain and infection to subside.

BMT Day +25 “A shitty, crappy week” pardon Teri’s Chinese

3/12/11

What are Teri’s current problems?

Her white blood counts have inched up to 800 and holding steady.  Ben’s seedlings are growing slowly but are growing.    

The mucositis (breakdown of lining of mouth, throat and beyond) became infected by herpes simplex type 1, the cold sore virus.  It has progressively worsened so that every swallow is painful as her mouth and throat feels like one large chancre sore.  She coats it with benzocaine for temporary relief.  The team is worried that is may be resistant to acyclovir, the antiviral agent she had been on, so she was switched to foscarnet.  It requires 12 hours to infuse it:  preinfusion, infusion and postinfusion + calcium as needed.  To get all of her nutrition, antibiotics, antivirals and fluids in, she now has between 5 and 6 IV’s running simultaneously. 

On day +22, she developed lower right abdominal pain and hematuria (blood in the urine) and was sent for an ultrasound and CAT scan.  A blood clot was found blocking her right ureter (drainage tube from kidney to bladder) that was stretching the ureter and kidney acting as if it were a painful kidney stone.  They began to flush it out and became one of the first woman placed upon Flomax ‘for her male side’ to get the ureter to push out the clot.  Later, BK virus was identified as the cause of hemorrhagic cystitis (infection of the bladder lining).  Because she was awakening hourly to pee and getting no more than 1 hour of continuous sleep, a Foley catheter was placed in her bladder … we can now view the blood in Technicolor.

Whoa.

How is Teri doing? 

Teri says:  I am completely sleep deprived and at times at my wits end.  I sometimes cannot see the light at the end of the tunnel and get emotional and cry.  It’s a vicious cycle.  The pain in my mouth and throat causes difficulty talking, eating and swallowing but I need to get protein (fertilizer) into my bone marrow (soil).  My tummy is getting better but the bladder cramps are still coming frequently.

Tony, her brother, is here for three weeks providing additional support, comfort and cooking.  Teri and B are enjoying his company and are happy to have him here.  He made the family man tou (steamed bun) recipe and a new one (hua zhuan) with green onions.

BMT is not for the faint-hearted, only the lion-hearted.  Teri, based upon the Chinese Zodiac, is really more tiger-hearted, and that she is. 

Teri needs your thoughts, prayers telepathy and long-distance Reike during this difficult period.  Thank you all!

BMT Day +14

3/1/11

Teri has not had any major opportunistic infections (infections by common or super bugs that take advantage of her lack of immunity) – that’s the good news.  That is the highest risk in her current state until Ben’s stem cell seedlings take root and begin to produce flowers (WBCs etc) which we expect later this week or early next week.

On the wall of Teri’s hospital bathroom are pictures of horrible mouth sores warning her of the consequences of not rinsing her mouth in saline every day.  Warning:  those weary of blood, may not want to read on.  This is the expected post-chemotherapy mucositis where the entire lining of the mouth, throat and GI tract breaks down, becomes ulcerated and bleeds.  I compare her mouth to a pizza (cheese = pus) where the pepperoni slices have fallen off leaving ulcers.  Pepperoni za anyone?  She is miserable as she shows me these ulcers and says it feels like one gigantic chancre sore covering her entire oral cavity.  This process has progressed to the point that she is spitting blood all night long, not sleeping much and her speech is garbled and marbled (like the King’s Speech).  Once her WBC rises, this will resolve, she’ll become more comfortable.  The continuous narcotic infusion is helping a great deal. 

Teri has made a window pane snowflake scale to communicate to B and his staff how she is feeling with her mucositis etc.  She places the number of large colored papercut snowflakes in the window that corresponds to her pain level from 1 (worst) to 5 (the best).  Today, a typical day, she started out at 6 am at one snowflake (not good) but by mid afternoon got up to 4 snowflakes (pretty good). 

We are stilling fighting the insurance company over coverage of Teri’s previous autologous (self) stem cell boost (or mini transplant) and round of chemotherapy in November which means contesting our own institution since we are self-insured.

The good news is that after another round of negotiation following initially declining to return our ‘admission’ (literally) deposit to us, the hospital finally returned it without an apology.    

Every morning and night for quite some time, Teri has been conducting a little ritual.  I just learned about it and wanted to share it with you.  When she awakens, she thanks God for giving her another day to live and intends to live it to her fullest ability.  She also prays for one friend who is also undergoing transplant as well as others on the BMT (bone marrow transplant) and 4NT (cancer) wards.  Finally she thinks of family members who are also going through their own challenges.  Each night she communicates via phone with a healer in India who helps her medicate and transmit positive energies to others in need.  She is a giver.

Correction:  For those of you who wondered, Teri will not grow 3” taller as a result of the stem cell transplant from long tall Ben.  It will be closer to 2”.

BMT Day +9

2/24/11

Teri is doing terrific without complications! 

In the garden analogy, all the weeds (leukemic cells), weed seeds (abnormal stem cells), and the flowers (healthy bone marrow cells) have been destroyed by ‘fire’ to allow the new annual seedlings (Ben’s stem cells) and the perennial seedlings (umbilical cord stem cells) to restart the garden (marrow) as early as March 1^st .

From the 17^th to 20^th, Teri developed intense nausea and abdominal pain akin to that in November.  Seeking help, she asked Phyllis her niece to come again from Iowa to do more Reike and healing touch.  She came without hesitation and performed treatments on the 19^th and 20^th and Teri experienced intense warmth in her abdominal and the pain and nausea began to subside.  She has improved symptomatically to the point that she can now interact, watch some TV, walk around the ward, eat a few bites of food. 

Why did Teri improve? 

The medical view would be that she began TPN (total parenteral = IV nutrition) to rest her gut, broad spectrum antibiotics, and PCA (patient controlled analgesia) with a continuous infusion of narcotics.  Teri’s view is that it was the added effect of Phyllis’ hands on Reike and healing touch that realigned Teri’s energy centers. 

Teri:  I feel that there are many other hands at work here as well.  I believe that God works in all ways to heal the sick and dying.

Teri has also tried acupuncture, Chinese herbs (cousin’s wife), an Indian-Asian healer (grand uncle of Ben’s former school mate) which she believes in.  Each ‘alternative’ therapy has given her insight, hope, and hands on relief.  These seem to center her.

As a Western-trained physician, these treatment approaches raise an important coda about the nature of healing.  We are instructed to keep an objective distance, touching is primarily used for diagnostic purposes, and treatment consists primarily of drugs.  As I observe, ‘alternative’ practitioners are constantly engaging the patient’s will and hope, touching and transmitting positive energy, and soothing and calming the individual.  Striking differences!

What is Teri’s hospital life like now?

·  She is in isolation (gown and glove) because she is still colonized with the superbug

·  We watch her daily WBC counts like a recession-depressed investor scrutinizing the market – a rise signals engraftment, WBCs, discharge …  

·  Four IV pumps push fluids and electrolytes (salts), TPN (amino acids, sugar), antibiotics/antifungals, anti-rejection drugs, and continuous narcotics. 

·  She receives multiple injections of insulin and WBC stimulants per day

·  She is walkings laps around the ward – 0 a few days ago, now up to 10.

BUT, as Teri grudgingly adapts to this hospitalization, she is hopeful, and has overcome one post-chemotherapy hurdle and is able to smile and share her wry sense of humor with the medical and nursing staff. 

“I only walk when you round so it’s all for show.”  [We are easily fooled.] 

[You have the Oscars marked down on the BMT calendar.]  Yes, but I don’t have a  gown to wear, only the hospital one.  [I’m sure they’ll make allowances for you.]

Thank you all for your support and prayers.  Thanks especially to Sandy, Tony & Martha, Elena, Kok Peng & Anna, Phyillis, Grace, Cindy …