Gratitudes

Day 7: It's still two steps forward, one step back.  Last night was a little more lively but still better than the first two weeks.  Her appetite continued to improve but then she tossed her lunch.  Her favorite activity is still pulling out her hair and making little fuzz piles around the room - drives me crazy.

As the acute physical concerns subside, the emotional ones set in.  Will the cells engraph or do we have to repeat the last two weeks?  Is her nasal stuffiness a virus that will take over?  What unknown problems are waiting to arise?  Will she get an infection?  Will one of us get sick?  You get the idea.

Luckily we learned a little trick the last go around that has helped in this department.  We learned that in our brains fear (anxiety) and gratitude cannot occur at the same time.  One added twist is that the gratitude must be written.  This has worked every time for me to short-circuit unproductive worries and calm my mind to move on to things I can control.  At night I just pretend to write the words of my gratitudes instead of getting up for paper.  Then I can relax enough to fall asleep...until the next machine beeps!

Deciduous

Day 6: Yesterday afternoon Annie's hair started falling out so she got a buzz cut.  She had big plans for some creative cutting but it made her scalp sore to move it around. Instead she delights in pulling clumps of hair out and making me squeal.  

She had a milestone night sleeping from 10 PM to 5 AM!  She has also gone 24 hours without throwing up, although we had a couple close calls.  She has some congestion which hasn't alarmed anyone but we're keeping an eye on it. With a white count of zero she can't fight anything off and we've got over 10 days before we'd expect to see her body be able to do anything. 

While we're often unaware of the world outside this room we are very sad to hear the news out of Oklahoma. There are many families in need of prayers and we'll certainly add them to ours. 

The music of the night

Day 5: Nights are improving and we're faring much better this go around with some wonderful night nursing help. Nonetheless I still find them sleepless enough to muse about what they'd be like put to music.  The setting for these ruminations is the convertible chair-bed pictured above.

First there is the beat.  In this case it is the ceaseless whirl and ticking of Annie's four to six pumps, the different ticking of the wall clock, and the hum of the mini-frig.  This beat can be the only sound for the first hour or so, helping to calm the mind enough to enter a sleep-state.  Then, like an intruder breaking through the window, comes the piercing "BEEP, BEEP, BEEP!" This is one of the main instruments featured in the composition and is accompanied by a shot of stress hormones guaranteed to take at least 30 minutes to dissipate.

The beeps come when an infusion is complete or if there is air in a line. They continue until a nurse can come in and that depends on how busy they are with other patients. We've learned how to pause the beep which initiates a little dance sequence where one shuffles over to the machine, gets silent relief, falls back into bed in a delusional attempt to rejoin sleep at which point the pause has expired and the beep resumes. Despite the futility of this, the sequence is repeated over and over again until the nurse arrives.  Sometimes the hum beat takes over and sometimes there is a surprise second set of BEEPS when the air bubbles return.

Then there is the chorus, and it has lyrics.  This repeats every two hours when on lasix.  The words are, "I have to go to the bathroom!" Then comes a dance number where you unplug the pumps, push the pole to the bathroom and return.

In between the chorus there are some verses of backup vocals from people in the hall by the nurses' station or patients in neighboring rooms.  These are usually soft and rarely jarring.  Then, on really special nights, there are the soloists.

One diva is the battery empty, extra loud, shrill BEEP, high-note sequence.  This results from when the pumps haven't been given proper attention either by not being plugged in after the bathroom dance or by not being pushed in just-right.  Another vixen is the throaty cough.  This stage hog will stay until tempted off stage with drugs.  The third soloist is the Johnny one-note call of "bucket" which is followed by a set of rather unpleasant sounds.

The final element of the musical ensemble are the dancing girls.  They come in several times a night to take vital signs, hang bags and check the bathroom.  Twice they also include Annie in the dance by having her step on a scale wheeled into the room.  All performers must wear a yellow gown that has to be deposited in a bin with a cymbal-like lid upon exiting.

Annie is still asleep now as she stars in this show night after night and the run promises to be for over a month.

One step forward, one step back

Day 4: The whole eating thing is up and down.  She'll feel like something but then it comes back up later.  Same with her energy level.  She'll have some energy but then get very worn out.  There is a lot she needs to do medically and therapeutically so we're learning how to best balance her good moments and energy to do what needs to be done but also give her enough fun to keep up her spirits.  It's a dance and we're still tripping all over ourselves.

We will look for evidence of engraphment starting around days 18-21 so for now it's about keeping her safe from infection and germs as well as trying to build up her strength.

I noticed on the patient white-board in the room that someone wrote Day 50 under "target discharge date."  I'll do the math for you, that's July 3rd.  Can you imagine spending 58 days in one room!  Before we only clocked 30.  Since I wasn't here this morning I didn't know the origin of this message but upon just checking with Tom I learned that Annie put it up there.  Things can get confusing when you tag team.

The hazards of meditation

Day 3: While I might get daffy after two nights on duty, Tom stoically takes double shifts routinely and even had a three-nighter.  He's our MVP but as of last night he was almost MIA.

Tom took up meditation in preparation for Annie's hospitalization and he has kept it up every day without fail.  Last night a nurse friend came and gave him a break so he went out to meditate.  He quieted himself on his favorite bench and soon heard a rustling sound.  Being the good meditator he is, he acknowledged the sound but breathed through it.  Again more rustling and more breathing.  At some point it got the best of him and he opened his eyes to discover ... a skunk ten inches away from him.  He had been so silent it hadn't noticed him but then Tom flinched, the skunk raised it's tail ... but luckily it's stinker was pointed in another direction and Tom was able to move slowly away.

Fortunately we have a new indoor option for naps and quiet time so we'll be safe from the dangerous creatures stalking Duarte.  Well all except for cranky Annie.  Now I too would be cranky if I hadn't really eaten for eleven days (she has lost about eight pounds) but I think the TPN might have given her a little boost as in the late afternoon she moved to her chair by the window and managed to do a few of her recommended treatment activities and catch up on some emails.  By dinner time she was actually interested in some food and in the end managed to keep down five spoonfuls of broth and a noodle.  She'll get TPN again tonight and hopefully continue to build her confidence with food.

Nap Pods

Day 2: Like a starving castaway obsesses about food, I'm obsessing about napping and, if I win the lottery, I'm donating a dozen of these lovelies to the hospital.

I drool over the promises on the website, "the ideal energy enhancing environment," "allows individuals to boost their productivity while helping maintain a healthy lifestyle," and "the elevation of the feet relaxes the muscles of the lower back."  Yes, yes and yes!

This is what happens after two nights in a row on duty; and I had help both those nights!  It is still a scary time for Annie and she wants Mom or Dad when the pain sets in.  So Tom and I have embraced our inner homeless person and have taken to sleeping in our cars, on benches and, today, I saw a tree and a patch of grass so I settled right in.  There was a breeze, there were birds chirping, all was good.  Then I got the call, Annie was in distress and wanted Mom.  To me this makes us even and I'm no longer going to feel guilty about the whole food episode yesterday.

Annie is, of course, napping.  A lovely morphine sleep due to her afternoon head pain and nausea (I wanted to point out that she throws up with or without food but figured that was in bad taste).  She had a nice morning though, a shower and bed change, quiet reading by the window, and having her nails filed (not suppose to cut them and risk bleeding).  I've also noticed that she always manages to be asleep when the hospital teacher comes by.  Suspicious.

Viking Annie

Day 1 (99 bottles of beer on the wall to go): When Annie had her first transplant there was a tiny bag of cloudy yellow liquid containing her stem cells (from the umbilical cord) hanging from the pole.  I was flabbergasted to see the picture of what she got this time - the large bag of red above.  And her donor gave more than one bag!  Now I'm thinking her donor is some massive descendant of a Viking warrior.

When Annie began having her considerable pain yesterday it started in her legs and moved down and then across her arms - all the largest spaces for bone marrow.  The nurse hadn't seen such a reaction, yet  questioned was it possible the stem cells were having an effect that quickly.  Annie kept saying she felt like she was ballooning up - like the incredible hulk I imagined.

She awoke from her morphine-laced slumber yesterday evening pain-free and she went on to have a routine night.  Today has been uneventful until I encouraged her to have a little to eat (it had gone so well back with the chips) and her body responded by dramatically tossing back the effort.  Now she is furious at me and I'm kind of skulking around the room while she shoots me dirty looks.  She'll go on TPN tomorrow and we'll wait a bit before attempting solid food again.

Nasty surprise

Day 0:  Well the stem cells made it and started dripping in about 3 AM.

When she had her first transplant we were warned how bad the next two weeks would be but none of that came to be.  Since she had received her own stem cells, stored at birth, and since she was the first to have that, everyone was pleasantly surprised how well things went.  That is not the case this time.

Today has been horrible.  Acute pain moving from one place to another.  She's on morphine and we've had to up the dose.  Not having been through this part before we're in a bit of shock and regrouping as to how we'll manage two weeks of this.  For the kids who communicate with Annie things may be on hold for a while.

There is little to be done but endure this.  The hospital staff is working to manage the symptoms best they can.  This is the body's reaction to having an onslaught of something unfamiliar pouring in.  The loving prayers and support are felt and we continue to appreciate them.

Mystery Man

Day -1: Somewhere abroad a 30-year-old man donated his stem cells this morning for a person he knows nothing about.  All we know is he is ABO compatible, 11/12 matched including DPB1, with A locus micromismatched.

Since then his cells have been making the trip in a cooler carried by a courier on foot, car and plane.  The number of cells were counted at the international facility and there were enough for her size in the first of two bags he donated.  The second bag will be saved, if not needed right away, and frozen in case the engraftment doesn't work.  The cells will be re-counted here and then she'll get them over three hours in the wee hours of the morning.

This is a good time for prayers for safe passage and a happy landing in Annie's body.

Soap

Day -2: With the heavy chemo further in the rear view mirror Annie has started requesting any snack food that we can't get from the hospital's extensive collection.  We gladly comply but really it does seem she goes out of her way....  This is her snacking while watching a show, while she is watched by a nurse through that window.  There are rows of monitors on that pole as well as another and the nurse watches her and computer readouts for the first sign of reaction from her ATG.  This happens six hours a day from 10 AM - 4 PM.  Tomorrow is the last day of that.  She usually sleeps through the first two hours since she's busy keeping us awake at night.

Today has been a week in the hospital and we've begun to find our place in our new community.  We start sharing stories as do others with us.  We are now officially part of the soap operas playing out on our floor.  There was the patient who was discharged just in time to make it to prom, the math troubles of a staff person's child (I'm a magnet for math trouble stories), the ups and downs of the families in our neighboring rooms, and even budding romances.  Why just last night Annie and her visiting night nurse were up and giggling at 2:40 AM about the nurse's potential new flame.  Life goes on.