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 …