Monkey On the Outside

Above my bed in The Cottage hangs a Japanese-style watercolor of a contemplating monkey.  The monkey is off-center against a brown background and if you look closely, another monkey, or perhaps his shadow, lurks mischievously behind him.  In yoga we talk about the “monkey mind,” which is always thinking too much and playing tricks on us, distracting us from the meditative practice at hand.  When I saw my room in the cottage and the monkeys perched above my new headboard, I instantly thought, Great!  Just what I need, a monkey mind infiltrating my dreams at night and playing tricks on me.  But as with everything on this journey, I am learning to live with my monkey friends and my own inevitable monkey mind.

Mike Reef and Cali ski
Mike and his mom Nancy managed to take all the kids up to the snow to enjoy El Nino.

The last couple of weeks were a physical low point in my recovery.  I struggled with the BK virus which attacked my bladder and made things very painful in the urination department.  At the same time, a blood clot started forming around my current PICC line, causing pain and cramping in my left arm and shoulder.  No sooner did these problems begin subsiding then I developed an intense headache.  I called the BMT hotline three nights in a row convinced my head was going to explode off my shoulders.  (Each time the doctors told me to take painkillers and go to bed.)  To compliment the headache, a low-grade fever developed in the evenings, high enough to give me the chills and a poor appetite, but not high enough to warrant the administration of that forbidden over-the-counter cure-all, Tylenol.  Through this uncomfortable phase, my creative endeavors were abandoned and walking between The Cottage and the car was plenty of daily exercise.  I buried myself in easy books or even better, mindless TV, and repeated to myself what the nurses said in the hospital, This won’t last forever.  My mind remained fantastically focused on the present, acutely attuned to the physical discomforts in my body.

Kirkwood Jan 2016 Faith, Summer, Cali
Faith, Summer and Cali enjoy the snow!

Then, as suddenly as the problems developed, they started to go away.  One morning I woke up and urinating was no longer a problem.  It was a miracle!  For several days, I whispered a little prayer every time I relieved myself, Thank you God for letting me pee normally again!  With the help of a prescribed blood thinner, the cramping in my arm disappeared overnight.  Then my fevers left and my appetite returned.  Suddenly I wanted the Trader Joes’ pumpkin pancakes and chicken pot pie and homemade cookies my caregiver so lovingly prepared.  And despite my late night fears of fungal meningitis or intracerebral hemorrhage, my headache did go away bit by bit, until one day I realized, the headache was gone.

Now one would think that with all my physical complaints relieved, I would be able to sit back and enjoy feeling good.  For a few days I did bask in the physical pleasure of wellness.  I feel so much better than yesterday! I repeatedly told my caregiver.  I must have sounded like a broken record, but she smiled sweetly every time and said she was glad.

Sum and Faith sled kirkwood
Summer and Faith are not so sure about sledding.

But my satisfaction to simply enjoy wellness was short-lived.  This is the way of the monkey mind: as soon as problems are resolved, the mind looks for something new.  My new problem was projects.  I needed projects.  Big projects, work.  I called my husband and bombarded him with ideas.  I would like to have my electric piano in the The Cottage.  Can you please bring it over?  There are classical pieces I need to learn.  And I am looking at engineering jobs, catching up with the industry all over the Bay Area.  There are classes Stanford offers to the public with world class professors – art, literature, writing, music, language, business – you should see the catalog! Do you think I would be allowed to take a class?  As he simultaneously balanced one toddler on his hip, sent our six-year-old to the shower, and reprimanded our son to get off the computer, he managed to point out, “You must be feeling better.”  Yes, I realized.  I must be feeling better.   It turns out monkey mind is actually a sign of good health.

So what am I doing to satisfy this monkey mind?  Let me tell you!  I am learning about local history and architecture.  I have discovered a very helpful website put together by the Palo Alto Stanford Heritage group.  There is a very long registry of all the historically significant and old houses in Palo Alto, of which there are many.  Each day, I pick a street and make checklists of the addresses I want to visit, noting the style of architecture and date of construction.  Then I put on my walking shoes and my HEPA-mask, pick up my clipboard and go.

Feeling incognito in my disguise (hot pink HEPA-mask, sunglasses, knit cap, trench coat, clipboard), I do not worry about what people think as I stop and study houses from the sidewalk, peering through bushes to get a better look at a roof line or custom eave gussets.  By looking at examples of the different “styles,” I am trying to grasp a basic understanding of the nebulous architectural language.  As a structural engineer by training and trade, architects are simultaneously my best clients and archenemies.  Engineers are logical and practical to a fault.  We name things for the materials from which they are constructed and their height: Two-story Concrete Building, One-Story Wood Frame House.  Architects are stereotypically artistic and idealistic.  Their names can be much more mysterious, i.e. Traditional Vernacular Modernism (??).

I have discovered some categories are easy:  Tile roof, thick adobe or concrete walls, and courtyards – Spanish Colonial Revival, makes sense.  White plaster walls with exposed wood triangle frames and steep roofs – Tudor Revival.  (I am not sure why we have to add “revival.”  It seems obvious to me we are not actually in medieval England or being colonized by Spain, but I guess architects really like to spell things out.)  However, there are other classifications that are more ambiguous:  Shingle style.  Is this anything with shingles that doesn’t fit in a different category?  The jury is still out.  I will learn by visiting more examples.  My favorite category I have encountered so far is Prarie Style-Seccessionist-Craftsman-Pueblo Revival.  Why not just call it the All American?

Spanish Colonial Revival
Spanish Colonial Revival

My job as architectural researcher is not without a few risks, however.  One time I was peacefully making my way down Coleridge Street, rich with pre-1939 specimens, when I realized there was no question about it, I had to go number two. (My post-chemo digestive track is not always very forgiving with the timing of such things.)  I quickly weighed the options:  try to make it back to The Cottage, hoping for the best, or head toward the much closer Horticultural Center Garden, where I had seen a public bathroom.  I chose the Horticultural Center.  With a light rain starting the gardens were deserted, and I soon found out why.  The public bathrooms were locked!  Who could garden without a bathroom?  A neat little sign explained, “Public bathrooms are open weekdays from 9am to 2pm.”  What kind of hours are those? I thought, in a moment of panic.  I looked at my phone, 2:39 pm.  I totally missed the window.

Tudor revival
Tudor Revival

Then I remembered my sister’s words as I left The Cottage.  “Call if you have any problems.  I’ll have my phone on!”  Embarrassed to be calling for such a silly reason, I dialed her number.  No answer!  At that very moment the clouds unleashed a downpour. I hobbled under the eave of the closed bathroom, stuffing my precious architectural notes into the breast of my raincoat and sweating to maintain my dignity.   I left a fumbled message on her voicemail, hung up and redialed.  This time she answered, but there was no voice.  Hello?  Can you hear me?  I shouted through my HEPA-mask.  No luck, I hung up again.  On my third try, we achieved a decent connection but between my muffling HEPA-mask and a helicopter flying overhead, she couldn’t understand a word of what I was saying.  Finally I shouted, I have to go poop! I’m at Gamble Garden!  In a jiffy she arrived in her little black truck and minutes later I was home safe and sound.  I managed to hold it together until I got home, but it took hours for me to recover from the physical stress of the incident.

Another time, I was respectfully minding my own business, checking off houses on my clipboard, when I arrived at a two-story Craftsman on my list almost entirely hidden from the street by ten-foot high bushes.  This particular example was a number one on the registry, meaning not only was it an old house, but an exquisitely and authentically maintained example of its genre.  I had to get a better look.   At the only break in the bushes a carved wooden gate and brick path led, presumably, to the front entryway of the house.  The gate was just about as tall as my head, so to get a glimpse of the structure I stood on my tippy toes only to come eye to eye with a person holding a leash.  Upon seeing my masked face, the leashed animal began barking ferociously and instinctively I immediately crossed to the other side of the street.

Suspicious me
Me looking suspicious.

The woman with the barking dog came out of her gate and glared at me.  I smiled back, trying to show I was friendly, but I soon realized neither she nor the dog could tell I was smiling through my HEPA-mask, especially from across the street.  She took out a notepad from her pocket, jotted some notes, looked at me again, and then started walking.  She took her cell phone out of her pocket and dialed some numbers.  She looked back at me several times before continuing down the street.

I was absolutely sure she was calling the police department.  Was I doing something wrong?  I just wanted to look at her house which was on the public historic registry!  I suddenly realized I must have looked extremely suspicious, in my long raincoat, pink mask, knit hat and clipboard, snooping around, making notes.  Trying to keep calm, I reasoned, When the police come I have a really good story.  It’s not a story, actually, it’s the truth.  I am a cancer patient at Stanford and I am supposed to go on lots of walks to regain my strength.  To make my walks more interesting, I am looking historical buildings.  Look at all my evidence:  My clipboard with addresses and architectural styles and dates, my HEPA-mask, my medical alert bracelet that says “BONE MARROW TRANSPLANT RECIPIENT”.  It would be hard to prove that I wasn’t doing precisely what I’m doing.

Either she gave in and let me go this time, or the police couldn’t find me among all the HEPA-mask-wearing, clipboard-toting stalkers in the neighborhood.  Nevertheless, I made a beeline back to The Cottage terrified of being arrested.  It was several days until I worked up the courage to go on an architectural mission again.  Now I look at houses obscured by bushes from the opposite side of the street, which usually gives me a better view and keeps me a safe distance from scary owners.

Being on the outside looking in is one theme of my existence right now.  Outside on the sidewalk looking into other people’s houses.  Outside my family watching them through the screen of FaceTime.  Outside holiday and social events, picking up news here and there through letters and calls from friends.  Outside sitting in the truck while Krissy shops in Safeway or Walgreens, watching people bustle in and out. Outside the world of commerce.  In some ways it is a nice break to be outside the rat race.  But anything I get comes to me through other people.  Even on-line purchases have to be driven to me from Santa Cruz and wiped with hand sanitizer before I am allowed to touch them.  Always several degrees of separation.

Luckily I have never been an avid shopper, but even I occasionally long for the American joy of spontaneous consumption.  The other day, while frequenting one of the only venues where I am allowed “on the inside,” the Stanford Cancer Center, I was standing in line at the pharmacy.  Mostly the pharmacy is a purveyor of prescription drugs, but the pharmacy has a small selection of commercial items.  My eyes started to bug-out at the things for sale.  Things for sale!  What a concept!  I found myself picking out new deodorant and agonizing over whether I  wanted an 8 oz bag of Circus Peanuts (pale orange peanuts made of marshmallow) or Trolli Peach Gummy Rings, not because I wanted candy, but because I wanted to buy something!  I thought of my friend who was raised in Russia during the communist regime and LOVES to shop.  I felt understanding for her passion.  However, the pharamcy is an island of commercialism in my otherwise commercial free world.  Outside the pharmacy I can’t even buy the Chronicle; the ITA just gives it to me for free because I am a cancer patient.

Maybe my monkey mind projects are a personal survival tactic for bringing meaning to my world outside, helping to distract me from all the important happenings I am missing on the inside.  My daughter will turn seven next week without me.  My husband was laid off from his job and may even get a new job without my support.  My twins will go from toddlers to potty-trained preschoolers before I return home.  Buildings I designed will be built and lived in without any visits from me.  Whatever the case, the monkeys and I have become friends.  My monkey mind keeps me going, even if I am on the outside looking in (for now).  And Happy Chinese New Year!  It just so happens it is the Year of the Monkey.

Reef surfing
Reef comes in from a good surf session at Cowell’s Beach.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

It Ain’t Over ‘Till Its Over

Warning:  Having been in-patient in the hospital for 25% of my days in 2015, I have officially lost all discretion regarding discussion of bodily functions.  This article contains significant urinary tract issue content.  Consider yourself advised.

On December 29, 2015, I was abruptly discharged from the hospital to begin my out-patient recovery in a nearby cottage with less than 24-hours notice.  Overall, this was very good news, though it was a little tricky for those preparing the cottage for my arrival.  I was discharged because my blood counts were recovering nicely and I had no complications requiring in-patient care.  Strangely, my discharge date matched the predicted discharge date that had been inscribed on my all-knowing white board for more than a month.  I say strangely because it was me who wrote that estimated discharge date.  My admitting nurse had originally written the date 12/15/15 based on some kind of magical admitting formula. However, given the information flowing daily from the team I knew her date was meaningless and staring at that meaningless number day in and day out was driving me crazy.  Towards the end of October, I calculated my own prediction, and when no one was looking, I smudged out the original date and wrote in careful numbers 12/29/15.  And lo and behold, here I was getting out on 12/29/15!  Who says you can’t control your fate?

me in the cottage
Me relaxing in The Cottage

When I came home to my new home away from home, The Cottage, I immediately sunk in to the soft couch and never wanted to leave again.  The quiet white carpet, the wicker furniture, the homey art, the kitchen smells.  Peace.  No more beeps, no more vinyl floors, no more IV-pole, no more 4-hour vital checks.  My guests could relax without masks and eat at a dinner table with me.  Heaven.  I immediately asked for a piece of toast with peanut butter, and it was perfect.

Krissy's labels
Krissy in her well-labeled kitchen.

Over the next few days, I discovered how weak I really was.  Standing in the kitchen to wait for my toast was a chore.  Showering left me out of breath.  A fifteen minute walk outside rendered me useless on the couch for hours.  Luckily I had my dedicated sister as my caregiver picking up the slack – making me food, cleaning, shopping, doing laundry, organizing the cottage to comply with the strict requirements of the “anti-microbial” lifestyle, which we fondly renamed “The Clean and Mellow Lifestyle”.

However, gradually my endurance lengthened.  I could walk five blocks, enough to take in the vast array of fine architecture and meticulously maintained gardens in my new neighborhood.  Religiously strolling five-block loops daily, I discovered gnome houses, glass spaceship houses, Asian floating houses, classic mansions, and Spanish haciendas.  In the first weeks, treasures appeared on every adventure: a house with a bridge connecting the garage to the main quarters, a sprawling child’s paradise with a giant skate-ramp and playground equipment scattered along hidden pathways through a tropical jungle, a secret abandoned garden with a padlock and a mysterious decrepit doorway.  I assumed I would continue to feel stronger and stronger, cover more and more territory,  and that would be that.

new years eve
My sister and I celebrate New Year’s Eve, “Clean and Mellow” style.

Don’t it always seem to go
That you don’t know what you’ve got
Till it’s gone…  (Joni Mitchell)

What I had taken for granted, what I have actually taken for granted for as long as I can remember, is having modest control over when I urinate.  It started one evening last week – an uncomfortable burning sensation whenever I went pee.  The feeling had come once in the hospital, and then disappeared again within 24 hours, so at first I didn’t think much of it and hoped it would go away soon.  At the ITA the next morning the team recommended I drink at least three liters of water per day and take a drug called Pyridium.  Any side effects?  I asked.  (I have learned to ALWAYS ask this question when you are prescribed a new drug.  Its amazing the things the doctors will forget to tell you – blurred vision, extreme dizziness, seizures – how could these things not seem important?!!) “Luckily Pyridium is a good drug, no side effects,” said the nurse.  “but watch out, it will turn your pee orange.”  Okay, no sweat, I thought.

However, by the next day, things were escalating drastically.  Suddenly it became extremely important to rush to the bathroom as soon as I felt even an inkling of having to urinate, and even then I was having trouble making it.  By the evening, I had soiled all of my pants and nearly all of my underwear.  The final straw happened when minutes after I relieved myself I was standing in the kitchen when suddenly the urge to go surfaced again.  I ran to the bathroom, but not without leaving an obvious trail of bright orange across the white living room rug all the way to the bathroom.  My sister was all action, with a smile (even a giggle) on her face.  She cycled the laundry, she busted out the rug cleaner.  “This reminds me of dog-sitting!” she said, trying to make me smile.  I was not amused.  What am I going to do, Krissy?  “You could bring the armchair into the bathroom, or sit in the bath tub without water?”  I tried to imagine relaxing in the cold tile bathroom all night.  It wasn’t sounding good.

Suddenly it dawned on me.  If my kids were leaving pee trails all around the house, I would make them wear diapers.  The reality hit:  I needed diapers.  Krissy, having just returned from Safeway with additional rug cleaning products, was immediately dispatched to Walgreens to brave the adult undergarment aisle.

Its amazing where we hide our self-esteem.  It turns out I unknowingly took a lot of pride in my continence because when it was lost, I grieved miserably.  Knowing fully how silly I sounded, knowing fully I was entitled to any fault imaginable having gone through the most intense chemo regime out there, I still wallowed in self-pity.  What has become of me?  I have to wear diapers.  Where is my life headed?  I hate my bladder.

When I called the ITA the next day to complain about my misery, the doctor was immediately sympathetic and said I should come in this afternoon to be hooked up to an at-home hydration IV.  How long will the hydration IV take to start working?  I asked.  “Most people report relief within a few hours.”  My eyes began to brighten.  Will I have an IV-pole?  I asked, trying to imagine traveling in my sister’s pick-up truck with an IV-pole sticking out the window.  “No, it will be in a back-pack,” she answered simply.  Interesting, I thought.  I guess I will see.

meds
My morning meds. The ones on the left are mandatory. The two on the right are optional.

Now you might think I would have loathed going back to the restraints of an IV after having just gained my freedom only days prior.  But this was not the case.  My misery was such that anything that promised relief sounded appetizing.  My 2:30 pm appointment couldn’t come soon enough.  Armed with five diapers and two changes of clothes, I marched up to the ITA with my hopes high.  An hour and a half later I was equipped.  I had a nifty black bag containing a three-liter IV-bag of saline solution and a portable battery operated pump, conveniently loaded onto a little wheely cart so I could pull it with me wherever I needed to go.  The pump pushed the IV solution at a continuous three-liter per twenty-four hour rate through thin clear tubing which screwed into one of the PICC line access tubes in my arm.  “Managing the home-hydration IV is easy,” claimed the all-business home-pharmacy nurse who educated my sister and me.  She showed us how to change the saline bag and change the batteries and how to clear an occlusion.  Suddenly the pump started beeping.  “Air in line” read the digital screen.  “Oh, that shouldn’t happen too often,” she remarked casually.  “All the information is on these hand-outs.  Just press “Pause” and then “Run.”  The bubbles should clear.”  I was skeptical, but I took her word for it.

The pump behaved all the way home.  Then like clockwork, when I was getting my dinner meds organized and contemplating a bathroom run, the pump started beeping.  I bent down to unzip the bag, but that action alone sent me running to the bathroom, necessarily dragging my pump behind, flopping out of the open bag and beeping indignantly all the way.  Of course I didn’t make it, so I had to change my clothes listening to the persistent squall of the pump.  Next I plopped down on the ground and tried the simple technique: Press “pause” and then “run.”  All was quiet…for about 30 seconds. Then beep, beep, beep.   Through dinner, I pressed pause and run about 15 more times before I finally couldn’t take it anymore.  Look, I just have to turn it off so I can eat, I told my sister, and she agreed.  After dinner we called the home-pharmacy hotline.  The nurse on call led us through a series of more complicated steps of releasing the tubing from the pump, massaging the microscopic bubbles up the tubing, and then putting everything back together.  After a few tries and several more bathroom trips we achieved success and the pump stayed miraculously quiet.

That night I managed to sleep reasonably well in between bathroom trips.  The pump remained quiet and I only had to change my pajama bottoms about three times.  However, in the morning new pains were arising.  My left arm was beginning to cramp in a suspicious familiar pattern reminiscent of my previous right-arm blood clot.  My bladder was aching even between bathroom episodes.  My whole body felt vulnerable and injured.  Luckily I had an early morning ITA appointment to report all my symptoms.

me in the ITA
Me in my ITA costume.

On Friday morning my Mom accompanied me to the ITA, giving my sister a much needed break.  We trecked up to the second floor loaded with our equipment for the day – books, lunch, hats and scarves, cell phones and computers, purses, my hydration suitcase, all my meds, and a whole slew of other very important things.  We looked like a couple of overloaded camels heading out for a week of camping.  However, once in the ITA things slowed down.  As always, my blood was drawn, my vitals assessed, and then we hunkered down for the long wait.  We used virtually none of our “equipment” and instead caught up on several weeks worth of gossip, compared notes on our most recent books, and analyzed all the other ITA patients and nurses in hushed voices.  I chose a seat conveniently located directly across from the bathroom and tried to use the facilities early and often.  Each day I was getting smarter about my predicament, and I had learned to stash my diapers and change of clothes in the IV suitcase, so when I ran to the bathroom in a panic I always had the necessary items with me without having to think about it.

Finally the beautiful young PA (physician’s assistant) came to see me.  She was truly saddened to hear my  comfort was not improving and immediately doubled my dose of Pyridium.  She also performed an ultrasound on my bladder to make sure the organ was properly emptying, and much to my relief it was.  (I hated to imagine how they would have forced it to empty!)  The PA also prescribed some strong opiate painkillers (just in case).  She ordered a separate ultra-sound for later in the day to check on my arm pain.  Finally, the home pharmacy nurse delivered two giant three-liter bags of saline to take home for the weekend.  When my mom tried to lift the package of saline off the floor there was no movement.  Too heavy.  There was no way we could carry these bags.  Never fear!  The nurse loaded the bags precariously onto my wheely cart, and off we went to the next appointment, carrying even more weight than when we arrived.

Actually it wasn’t exactly “off we went.”  It was more like this:

Mom and Jen are all packed up to leave the ITA, when Jen’s mom mentions she needs to use the bathroom.  Jen’s mom leaves to find the non-patient bathroom and suddenly Jen remembers she should use the bathroom one more time.   Jen dramatically drops everything on the ITA floor.  She rushes into the bathroom, tripping over her newly weighted suitcase on the way and nearly falling in the portable commode.  She doesn’t have time to lock the door.  She tries to make it to the toilet.  She doesn’t make it.  She grimaces through the inevitable pain.  She then takes off her soiled undergarments, only to recall the home-pharmacy nurse kindly “organized” the suitcase for her, removing her handy stash of diapers and clothing.  A man tries to come in the bathroom door.  She waddles to the door to shut it, apologizing for not locking the door.  She redresses without her undergarments, but leaves her shoes off.  She scoots back to her pile of stuff in the middle to the ITA floor, dragging her heavy suitcase behind.  She tells the waiting man she’s not done yet.  He looks confused, but she doesn’t stop to explain.  She drags her backpack and suitcase back into the bathroom.  She locks the door this time.  She changes in relative peace, and the washes her hands and arms profusely, trying not to imagine the array of germs and strange private bathroom episodes these facilities witness by the hour.  She exits, relieved to see her mom ready and waiting.

With Jen’s HEPA-filter mask on and camel bags loaded, Jen and her mom find the elevator and ride to the first floor.  Then the urge hits again.  Jen has to go to the bathroom.  Once agin Jen drops everything in the lobby.  Jen’s mom chases after her calling, “Leave that heavy suitcase here!”  “I can’t,” Jen says through her muting HEPA-filter mask.  “It’s attached to me.” Her mom doesn’t understand.  She tries to take the suitcase.  “No!”  Jen shouts.  Her mom is confused.  Jen has no time to explain.  She rushes to the public bathroom.  All the stalls are full.  She doesn’t make it again.  Luckily she has her stash in her suitcase this time.  She enters the stall and changes in private, and then washes all over again.  This is a public bathroom.  The germs can only be worse.

They have no time to waste.  They cross the street to the radiology building.  They take the elevator to the basement.  Suddenly Jen must use the bathroom.  She doesn’t say anything this time and her mom doesn’t ask.  Luckily, no accidents this time.  When they finally make it to radiology reception, the desk clerk says “You are late.  I am not sure we can honor your appointment.”  All Jen can say is, “I made it here as soon as I could.  And by the way, where is the nearest bathroom?”

scrabble update 22
The Scrabble Tournament continues. My dad is proud of his achievements, but my mom is making a comeback.

Well somehow I finally made it to the ultrasound table, partially undressed in a gown.  I laid on the soft table in the dark quiet room.  It was the most peaceful moment of my whole day up to that point.  I actually closed my eyes and started to drift into a peaceful rest.  However, the ultrasound was longer and and then longer.  The technician asked me to make a fist, release the fist, make a fist, as she pressed harder and harder into the part of my bicep that hurt.  At first it was just an idea, and then a nagging thought, and then when I could take it no longer I jumped up from the ultrasound table.  I have go to the bathroom! I exclaimed, busting out the door with my gown half-covering my bare torso.  “Wait, I’m not sure it’s clean…” the technician called weakly after me, but I was on an unstoppable mission.  I made it by the seat of my pants, caught my breath, rearranged my gown.  Disaster averted again.

When I returned, she treated me more cautiously, implored that I stay in the room while the radiologist reviewed the results, but then quickly added I could wait outside if I felt more comfortable.  After the blood clot in my arm was confirmed, I returned to my mom and our mountain of things in the waiting room.  It was finally, finally time to go home.  By four pm I was at last horizontal on the cottage couch, hiding in the fantasy world of my book, aching from the inside out.

walking with my home IV
Walking in my new neighborhood with my home hydration IV.

I am happy to report things have improved since last Friday.  I am still on the at-home hydration IV, but the pain is much better. I can walk several blocks without running home to use the facilities.  I am going through many less diapers per day.  The doctors have tried prescribing an interesting array of drugs, each with their own peculiar side-effects, to help with the urination urgency and cramping.  But I have finally discovered (as of last night) the two most effective aids: opiate painkillers and sleep.  These remedies have the added benefit of helping with just about any pain or problem in your life.  I was initally wary of the large vial of opiates hanging out on my medicine table, but after the urging of the on-call doctor last night when I called complaining of a throbbing headache, I finally gave in.  To my surprise, not only was my headache improved, but my urination problems disappeared, my arm stopped cramping, my nausea and burning throat vanished, and I slept for the first time in several nights.  Boy does the world look brighter today.

The doctors have assured me I will not have my at home hydration bag forever, eventually my body will pass this opportunistic virus and now that I have experienced at least temporary relief, I can imagine the light at the end of the tunnel.  However, I am less naive then I was a few weeks ago.  This BMT process – this is interesting stuff.  And it ain’t over ’till its over.

Spring
Spring is coming.