Tap Tap Tap... IMPATIENCE calling.

It has only been 47 days since the SCT and Jim and I are both antsy to see quicker progress.  This, despite the fact that we know it will be the end of March before we know much conclusively.  Still, Jim hoped he would start feeling more normal, and the same old pains where the bones were compromised still hurt.  Nice to have healthier blood, but misery to have the same old holey bones. They will take even LONGER to heal.  Do we see a pattern here?

The past week culminated on the worst Thursday on record.  Not from a health viewpoint, but just overall.  It started with a buzzing circuit breaker box just outside Jim's door, which signaled that the heater and the electric blanket were duke-ing it out over which way the electricity would go.  Drew had been launched toward the bus in absurdly cold temperatures.  Jim had a sudden bout with the flu in the hospital garage necessitating a quick ride home and a blown-off appointment.  The washing machine on our second floor chose this particular day to create a "meditation" waterfall of sorts, into our kitchen.  Throw a bathrobe on it.  (The meditation part was when  I was "thinking" of slitting my wrists)

And just so you know, having a cancer patient provides no dispensation against illness or injury for other household members.  I've had fairly persistent neck pain and vertigo for two weeks, sufficient to send me to the ER to rule out  some draconian possibilities which were, gratefully,  nixed. And Drew was taken to a different ER two days later with asthma and breathing difficulties, which also concluded happily.   Good Lord!  Enough with the raining wild monkeys...PLEASE!  While all ended well enough, the profusion of problems all in one day makes one wonder if we are God's  only entertainment channel.

Oddly,  through it all, I noticed a strange calm.  Back in my other life before this, I was fairly high strung and emotional.  Now I am someone I scarcely know.  I don't  seem register "uh-oh" the way I did, but morph straight to a cool problem solver dealing with whatever, all the while wondering who the heck has overtaken my personality.  I don't know this woman.  And if she is here to stay, does anyone know where  Linda went?

Hmmm, maybe a convent in the South of France?  Oh, there she is now!!! (photo above...)  Imagine being a size 3,  living in a quiet place, knowing what you will wear a week from tomorrow, just the rustling of skirts, oriental carpets, meals appear and are on time,  maybe making a little jam occasionally, and the sound of Vespers.  Sounds like Club Med to this old girl.

Lots and Lots of Sleep

The pages are flying off my daily calendar like a cheap 1950's movie. More than two weeks have passed since they sent Jim home. The first ten days were filled with daily trips back in to see the doctor, visits from the Physical Therapist,  appointments galore.   But it has quieted down to every four days or so, which is a blessing. Overall his health is good, in that his blood counts and other tests indicate a lessening of the myeloma. His blood count shows a strong replacement of the killed cells with new cells.  Platelet count is inching up, which is what we want.

The biggest problem to deal with is the fact that he managed to lose ten pounds in one week. His weight is, at this minute, its lowest since about sixth grade. This leads, of course to several ancillary problems. He is always cold, although keeping him sequestered under an electric blanket, in a room with a heater, has made things easier. Perhaps the most noticeable thing is that he cannot ever seem to get enough sleep.  This avid talker on subjects that interested him, is now quite silent.  Chemo is life-saving, but it takes as much as it gives, really.   It is not uncommon for people to develop what is affectionately called Chemo-brain.   This is  manifested by confusion, forgetfulness, inability to concentrate,  to assimilate information and organize it.  Heck, I've had that for 20 years!   But no, with Jim it is most visible in his hesitancy to agree with anything, to move forward, to consent.  And of course my patience level is nil, right about now.

This brings me to a thought I tossed around en route to the hospital one day. Ten or fifteen years ago,  I had a dear friend who was a candidate for a lung transplant.  As part of being on the list, she needed to put down two names who would be her caregivers.  Her husband was first, and they asked if I would be second.  WIthout hesitation, I nodded an emphatic, little-thought-out "yes!"  It seemed like a no-brainer. Who wouldn't?    I had NO idea, nor did they, what kind of commitment I was blithely agreeing to.  How many hours would this take away from my job, my kids, my home, my husband?  What would be my responsibilities?   How much reflection should I give to how I would feel dealing with her possible depression, or her potential demise during my watch?   Would her spouse feel his role was to care for her overnight and expect me to be there each and every day before he went to work?  What if I wanted to quit?  How could I ever do that?

Often, we are led by our best intentions.  We are all too ready to jump first and think later.  I say this, because having been caregiver to Jim, I understand better what the commitment meant.   It is an enormous undertaking, and without giving it a lot of thought, and considering the parameters and ramifications of the job, your good intentions could become a loathsome burden.  That must be balanced against the good you can reasonably do.  Only then can you offer yourself in such a selfless role.
  

Color Jim Happy!

If nothing extraordinary happens,  Jim will be released from the hospital tomorrow. ( Well THAT'S extraordinary!)  His blood-count numbers are stable, the elusive low-grade fever is gone, and it is time for him to say farewell to the four walls he has been staring at since the 12th of December. Color him happy!

We have transformed our dining room into a bedroom for him. The drapes have been removed and laundered, new bedding purchased, carpet steamed, woodwork scrubbed. The theory is that spending time downstairs where the family is nearby is important in helping him readjust his outlook from one of "hanging on" sequestered under the blankets to one of emerging from the tunnel into daylight, with his new stem cells.  And as nurses go,  I am starting to look good.

Color me....um a little intimidated, but better than earlier in the week. I had a mini melt-down at the thought of bringing this trunk-load of eggs that is my husband into a less than operating-room state of purity. And then cooking for someone with a variety of restrictions.

Part of my mission in writing this blog is to share experiences and their subsequent ripples with you, my reader. With that in mind, some observations.

1. Life in general is fraught with inconsistencies. I'm someone naive enough to believe if I have all the pieces, I can make things add up, and if they don't I keep probing.

2. In my lifetime, rules have gone from serving the patient to serving the large institutions, including but not limited to the medical community. Our litigious society has brought many financial settlements to certain people, sometimes even justified, but it has caused the same unexpected consequences as Political Correctness has. You never know if you are talking about actual facts any more, or if you are on the spongy moss of double-speak.

These two factors deeply color the idea that I can take care of Jim adequately at home. The manual I was issued outlines a well-established protocol of neutropenic protocols and diet.   Soon the dietary restrictions will be relaxed, and as a caterer I am fully aware of safe food practices.  Most of the remaining food restrictions don't even pertain, as he does not usually frequent restaurants, eat sushi regularly, visit salad bars, nor fast food establishments much (bye for now, Burger King).  

Visiting nurses and physical therapists will be pencilled into the spaces where we are not frequenting the garage under the doctor's office thrice weekly.  Little grandson Drew is staying with his dad for the next few days.  And I am assured that I am perhaps over-worrying.   But we come back to the fact that  rules are written for such a broad cross-section of humanity, and discreetly protect the hospital  from harm (i.e. law suits) that they would NEVER understate danger, nor fail to recommend you wear two pairs of suspenders and a couple of belts.  Why wouldn't they?   I have read warning labels that contain absurd precautions.  I recognize that.  But here, I can't tell what is the "do not use this toaster in your pool" from the warnings that are necessary for Jim.   So after having sat down and having a rational chat with myself, I have decided to re-read the book so I don't miss anything, and apply "Keep it Simple" techniques and assume that if other people have survived their discharge from the hospital, so will Jim.

But just incase, don't stop praying quite yet.

Once in a Blue Moon

Happy New Year!  To say that I am deliriously happy to bid farewell to the 20-ought-anything is an understatement!  We lost both Jim's parents in 2001, and my dear friend Peggy.  Of course, 9/11 is another of those Day that will Live in Infamy occasions. Truly, it was the event that most changed the the world as we know it.  Never again will any of us be as complacent, as secure, as invincible as before.

Happily new people entered our lives in the 21st century, namely grandsons Joe and Drew.  Both remain the kind of blessing to our daily lives that those without grandkids view with a certain skepticism, verging on disbelief.  The boys and their sibs remind us that love (and not to forget humor) really makes up for a lot.
In this decade, we travelled a lot, saw the hay-day of RSH, ran workshops, spoke at conferences, and generally had a lot of satisfaction and fun.

The big news today is that they are preparing to release Jim from the hospital some time next week. That is wonderful in that it is a positive vote for his recovery from the transplant.  OTOH, it also means this old house is supposed to be ready to receive him under pristine conditions.

Um....

This old house was built the 1870's and comes with hot and cold running dust.  Its insulation is horsehair.  We have radiators. His room in the hospital has been set at 74 degrees.  How do YOU spell Fat Chance!   Just can't be done!  We can add an electric heater, and down comforter, but I fear we will fall far short for his comfort level. After all, he has blood the texture of  Dr. Pepper coursing through his veins.   Meanwhile, as I type, little Drew is hacking away down-stairs...  has had a persistent cough which may be part of his asthma...... or not.

My dismay about normal living  conditions v. what Jim needs were all the more heightened when I was told that the brand new coffee maker I bought for his room on the advice of his nurse,  cannot be used, because you cannot clean out the delivery tube inside it to their specifications.  Oh, my.   So after all this, they are sending him home to see if  EYE can kill him!! With coffee grounds and other floysam and jetsam floating around here?  Stay tuned!

One thing I must do is somehow replace the bad stuff  with gratitude for the blessings  2009 brought.  I am grateful for all the hands-on real time help I received, from Lynn taking Drew for endless hours, to Adrien fixing everything that I break (with a smile, even.)  I am grateful for the battalion of doctors who care for Jim, or who do the research to make such miracles possible.  You can never believe how grateful I am that the little footsteps overhead are silenced.   Nutjob apparently has moved on.    I am grateful to have a car under me...after too many cars with no sense of the absurd.  For friends who step forward to help lug us get through this.   For people who leave comments on the blog. I am a total sucker for comments.

Most of all,  I am grateful for family... Jim and my kids... the littles.... my sister, and all those who confess to membership in this crazy tribe.  Family isn't only about blood relationships.  Family extends to those who are here through thick and thin, on whose support we rely.   We are blessed with lots of those people as well.  May the next year bring new beginnings,  rich insights derived from the challenging times, unfettered laughter sometime in every hour, looser-fitting clothing,  easier breathing, determination, grit and the gift of not taking ourselves too seriously.

Mazel tov!  (daintily raising my tumbler of jagermeister  on the rocks, little pinkie crook't)

You didn't think I'm getting through this sober, did you??