If I Had A Button

There are a lot of people in the world who feel powerless over their situations.  Imagine children living in homes where abuse occurs.  Imagine people in disaster zones, like Haiti, or more recently in Chile.  Imagine young people who live in under-developed countries where resources and jobs are not only scarce, there simply aren't any.  How will they live?  Criminally insane people and jihadists come from the likes of these.

And then there are the chronically sick.  Lately Sue's been experiencing chronic pain.  You get tired of being sick, and you get tired of being in pain, and you get tired of feeling powerless, and then wierd things start to happen.  Sometimes this feeling of powerlessness leads to despair.  Sometimes it leads to anger.  In Sue's case, she wants a button to push.  The way she put it last night, and again this morning, was something like this:  If I had a button to push, I'd push it.

In her case that's a double entendre.  It's frustrating, and it makes her mad, that she can't get her pain medications administered on time while she's in the hospital.  Even when she asks for them they don't get timely administered.  Sometimes, in hospitals, they will give you a little morphine pump that hangs on your I.V. stand and it has a little red button you hold in your hand and can push every so many minutes to self administer your pain meds.  Sue wants one of those, but so far they haven't given her one.

But the other sense of the button-to-push double entendre is more ominous (and here I specifically use the word "ominous" instead of "sinister").  Here we are talking about a Dr. Kevorkian, a.k.a. Dr. Death button.
I understand this sentiment of wanting a button to push, and I've always agreed with Dr. Kevorkian's assertion that "dying is not a crime."  Obviously not everyone agrees with this assertion, because the "good" doctor served eight years in prison for the crime of assisting terminally-ill patients expedite their own death.  He assisted 130 by his own account (see http://en.wikipedia.org/wiki/Jack_Kevorkian ).

So we dealt with these very real sentiments as constructively as we could by co-writing a new verse to the Hammer Song (written and sung by Pete Seeger and later sung by Peter, Paul and Mary, "If I had a hammer, I'd hammer in the morning etc."  We now call it "The Button Song" and we had a silly good time singing it in Sue's isolation room this morning.

If I had a button,
I'd poke it in the morning,
I'd poke it in the evening,
And never let it out of my hand,
I'd poke out mor-or-phine,
I'd poke out i-ice-cream,
I'd poke out the love between
Our doctors and insurers,
All over this laaa-aaaa-aaa-and!


P.S.  When looking for a YouTube version of the hammer song, I came across this gem:
Hammer Song, by Obi

He Came To Take Her Away Tonight

The past few days have been a little scary and emotional.  Sue's had a lot of anxiety about her loss of strength and what has appeared, quite frankly, to be the end of this age -- or at least for her.  We've all been coping with it.  Sue's had a steady stream of visitors, calls and cards, all of which picked her spirits up.

Valerie and I did not know what to think this evening when we arrived at Sue's room to find the door closed with a bright orange "droplets precaution" sticker on the door, and a table of masks, gowns and gloves outside her room.  The nurse told us masks were mandatory for all visitors.  Shortly after we went in Dr. Singh stopped by and gave us the good news and the bad news.  The good news is that, while Sue is very sick, he believes she will recover from this and recover her strength.  The bad news is that he thinks she may have tuberculosis.  Dr. Singh says that the internal infections from TB could account for her loss of strength and general weakness.  Her symptoms are consistent with this diagnosis, and the recent scans show lesions in the upper lobes of her lungs.  Dr. Singh indicated that pneumonia would normally accumulate in the lower lobes, not the upper lobes.  They will do more specific testing tomorrow.

This is potentially bad news also for those of you who have visited Sue, as well as the 180 kids she recently taught and everyone who has been in contact with Sue over the past several weeks.  Since this diagnosis is preliminary and not yet confirmed, Dr. Singh is not wanting to publish it.  However, I think it only fair to inform those who have visited or who might.  If the diagnosis turns out to be TB, Valerie, Jessica and I will each get TB skin test, and you can be sure I will inform you at the earliest confirmation of a TB diagnosis.  Dr. Singh did not discourage us from visiting Sue with proper mask precautions and handwashing, but he thought it prudent to caution those with weak or compromised immune systems to avoid visiting at this time.

As an additional precaution, they moved Sue to room 319 in the main wing, which is an isolation room with a self-contained circulation system.  You can see down into the chapel from her window.

The visit by Dr. Singh this evening was encouraging to Sue.  She was visibly energized and animated just to know someone thought they knew what might be wrong with her and that it might have a cure.  (She even responded well to the cancer diagnosis when it was dropped on us last May, because then at least her ailments had a name.)  When the burly young man arrived at Sue's room at 9:15 this evening to transport Sue to room 319 he came into her room and announced: "I've come to take you away."  Sue, who'd spent the last two days expecting God to come and take her away replied to the young man: "You don't look like I thought you would."  Her face was all smile at his puzzlement at her irreverant humor.  Valerie and I both got it, but it went over his genial, angelic head.

Where She's At

Sue's in room 502-1 at Saint Agnes Medical Center.  She has her cell phone with her.

Gray Day

In our living room we have a high, half-circle window with no window covering.  It has a decorative window-pane divider that looks like a rising sun with sun rays radiating upward and outward.  The window faces east, so in the morning when the sun is rising and sunlight is flowing full through the "sunrise window" the room is flooded with exceptional light.  Except not today.  Today is a gray day.

Outside the sunrise window the sky is gray, and the tree in the front yard is lifeless and barren.  That tree has been dying by degrees since before we bought this house.  Every year there is a little more terminal die-back in the wood.  This year the tree is full of mistletoe that sprouted last summer.  Mistletoe is a parasite that reminds me a lot of multiple myeloma.

Sue's myeloma is like a parasite, sucking the life out of her. She's weaker by the day.  Yesterday she was shuffling around with Connie's Winnie Walker, but had trouble transitioning from the walker to a chair or a toilet, and then getting back up was a major production. I've installed as many assistive devices as I can -- raised toilet seat, grab bars, shower chair. But today Sue can't even sit up in bed by herself. 

Looking out at the sky through the sunrise window, I see the gray, and I feel it.  I know the sun will shine through that window again, but I'm not sure if the tree is going to make it through another year.

Do What You Wanna Wanna Do

This week I started studying in earnest for the general contractors' license exam.  You might think I have enough credentials, with an MBA, a JD and a real estate broker's license.  True enough.  But this isn't about the money or needing something else to do.  This is about doing something I've always wanted to do.  From an early age I've dreamed of building certain things and by George, I intend to build some of those dreams if I can.

This all came to a head for me a couple of weeks ago.  A 50 year old guy from our church, a guy who worked with me as a paralegal and property manager for four years, suddenly up and died.  Massive heart attack.   Boom!  He's gone.

Later that week, Sue was cleaning up some papers and filing them in her little file box and she stopped, pulled out a file and started weeping.  What's wrong?  I asked.  She held the file out to me.  It was titled:  Hikes I Want To Take.  It was filled with cut-out magazine and newspaper articles about hikes -- mostly local but some in exotic places like Switzerland, Hawaii, Ireland etc.  We haven't talked a good deal about it, but we both sort of know that Sue's hiking days might be over.

So for those of you who still have your get up and go, you might want to get up and go.  Dust off your files of dreams and, like the Mamas and the Papas sang, go where you wanna wanna go, do what you wanna wanna do.

Oh Snap!

Sue has read about or heard about a lot of people with multiple myeloma who've suffered broken bones.  The myeloma cells eat away your bones and weaken them, making you susceptible to breaks.  So she's had a lot of anxiety about that.

This morning we were getting ready for church.  Sue got up from putting her shoes on and immediately fell.  We both heard a big crack and Sue lay on the floor clutching her ankle and crying.  We both thought she'd broken her ankle.  For Sue it was the one thing she'd anxiously dreaded.  For me, it was just a sickening, helpless feeling.

When Sue got composed I picked her up and put her on the bed.  She's as light as a feather now (big feather).  After we recovered from the shock of thinking she'd broken her ankle we calmed down and realized it seemed more like a sprain.  Now that the day has passed we are pretty certain it is just a sprain.  The ankle is a little swollen and a little sore, but Sue can support her weight on it and it does not have any discoleration.

The combination of pain in her upper back and pain in her ankle and general pain of neuropathy caused Sue to go back on the Dilaudid (morphine).  It also dulls the pain of anxiety.

Who Pneu?

Sue's been sick and mostly bed-ridden for the past week.  She's been very tired, easily sleeping 16 hours a day, and she's had a nasty, deep, rattling cough.  Thursday the local doctor put a name on her pneu-est ailment: pneumonia.  Who pneu?

Sue's neuropathy is getting worse, not better.  She's very unstable when walking.  Connie Freeland has loaned Sue a souped-up rolling walker with hand brakes and a padded chair.  It's a "Winnie Walker."  I'm going to install hand rails in the bathroom and shower tomorrow.  Remember Melanie, the singer?  "Don't go too fast, but I go pretty far."  Well Sue don't go too fast or too far.  And Melanie rode her bike or roller-skated -- she didn't drive no car.  But Sue wants a new car.  I am presently leaning toward a power wheelchair.

The local cancer doctor wants to put Sue back on total disability from teaching.  She has a follow-up appointment with Dr. Wolf in San Francisco on March 5, and I expect he will concur.

The going back to teaching thing lasted three weeks before the pneumonia hit.  The staff at the middle school Sue got assigned to were terrific.  The kids were horrible.  They were like sharks who smelled blood in the water.  They were like predator cats, sensing a weak animal (Sue) and going for the kill.

Aside from all that, everything is hunky dory.

Knocked Back Down

I've taken a break from blogging this past two months. I've been depressed and not eating right nor exercising.  Nor have I felt like writing.

Sue had her stem cell transplant in September, then had a relapse in December and had 12 sessions of radiation specifically directed to eradicate a pocket of active myeloma cells in in lower back.  Some of you wrote to caution against radiation.  While we felt that there really was no alternative to radiation for eradication of the myeloma cells in her thecal sac area, it is apparent that the whole course of radiation treatment has caused a lot of damage over a short period of time.

During and following the course of radiation Sue's doctor also had her taking the steroid dexamethasone. She's been backing off that stuff and will stop next week.  The steroids have her face all swollen up and she has a chubby chipmunk-cheek look about her face.  The steroids may also have contributed to a rapid decline of Sue's health.

 Prior to and during the radiation and continuing after the radiation through today, Sue has experienced a significant decline of muscle strength and muscle mass.  She is weak to the point that she has difficulty getting out of a chair, difficulty getting into or out of a car, and difficulty walking -- especially up hill or up stairs.  She also has trouble with her balance, and she has fallen a number of times.  Additionally, she's lost a lot of weight.  She is down to about 100 lbs.  Pre cancer diagnosis -- ca. April 2009 -- Sue weighed about 140 lbs.  When I first met her, about 30 years ago, she was about 115 lbs.  She was a little thin following the stem cell transplant, but she's lost so much weight in the past two months that her legs look like tooth picks and she has very little body fat.  Her skin hangs on her in several places like elephant skin, and she has the gaunt appearance of prisoners of war who've been on near-starvation diets.

Worst of all, her neuropathy in her feet has intensified and creeped up such that now she has numbness, pain and tingling from her knees down.  This past week she's had a disturbing pain in her back between her shoulder blades accompanied by numbness of her finger tips.  We are hoping this isn't another relapse with active myeloma cells again.

We don't know what has caused the muscle weakness, loss of muscle mass and the increased neuropathy.  Some say it is the steroids; some say it is the radiation; some say it could be from the nerve root damage caused by the myeloma pre-radiation. 

Sue's general decline of health in the past two months has been accompanied by a general decline of energy for the daily tasks of living.  She is very tired and easily falls asleep at night and seems to need 10 to 12 hours of sleep.

The only bright spots since December are that the lower back pain Sue was experiencing pre-radiation seems to be resolved and Sue has stopped taking the Dilaudid (morphine) that had been prescribed for her pain.  Getting off the pain killers has given her a better grasp of reality and brought her a little closer to her pre-chemo mental acuity. 

Aside from these  bright spots, this past couple of months has seemed a bit like a death watch.  That's probably overstating the grim reaper's case, but that how it has seemed.  For the time being we are both running low on optimism. 

Don't want to end on a downer note.  We're finding some inspiration in the winter Olympics.  One can only imagine the work that goes into the pursuit of a single Olympic medal.  It isn't just the winners who have been in pursuit of that medal.  A lot of effort goes unrecognized on the medal stand.  Every athlete who trains hard and competes with her best effort is a hero in my eyes.  I'm giving the same accolade to the cancer warriers who fight hard; some get the prize and some don't.  But they're all winners and heroes in my eyes.