Grandma, seeks reindeer

I suppose real bloggers post on a more regular schedule.  But I’m not a real blogger, am I?

Some periods of life just don’t result in material for a blog.  Sometimes, not even enough for a short Facebook post.  Either this is one of those times, or my chemo brain is worse right now than I thought.  If you are not aware, chemo brain is both real and sporadic.

This is the time of year I hate.  The period of November that is cold, grey, and rainy.  I would so much prefer snow.  These November days just feel like I do – blah.  And then it leads to December.

So much perkiness all around.  Really?  Is it real, or is everyone just better at pretending than I am?

I hate Christmas.

I have since I was a child.  With my alcoholic father, alternating between extreme depression because it would be his “last Christmas”…and then driving my mom and me while drunk, down icy streets.  My cousins all seemed to be enjoying themselves.  I don’t know if they really were.  I remained on the sidelines at my Babcia’s (Polish for grandmother) house, waiting for the whiskey to make my father totally obnoxious, and praying that some adult – any adult – would pull me aside and tell me everything would be okay.  (To this day, no one from my family will admit they had any idea my father was an alcoholic.  Yeah.  Right.)

So, if you like Christmas, please continue to do so.  At 68, I am pretty good at just gritting my teeth through December 26.  Then I self-medicate with hours and hours of college football.

I didn’t anticipate this topic when I started typing.  But.  Here we are.  I wish I could promise you future perkiness.  But as I wrote in the beginning, I don’t know how many – or few – precious days I have, and there are thoughts that need to be preserved.  Well.  Maybe they don’t really need to be.  I just want them to be, for whatever posterity there is.

And now I am going to seach for the recipe for Thompson turkey, to see if I think it could be adapted to a crock pot.  I can hope.

A funny thing happened on the way to healthy lymph nodes…

Twelve hours after my mother died, in April of 2013, my oncologist told me my remission had failed, and the only thing left was a stem cell transplant.  Getting from his diagnosis to the actual transplant was an arduous process.  Meetings.  Paperwork.  Dealings with health insurance companies.  Blood work.  Pulmonary tests.  “Salvage” chemo.  Harvesting my stem cells.

Decisions, decisions, decisions.  The most important of which was whether or not I would actually go ahead with the transplant.  The transplant doctor – a man with an uptight personality so very, very different from the sweetness of my oncologist – was, nevertheless, honest with me when I asked the ultimate question: What are my chances?  Not very good.  Not good at all.

Hmmmm…What to do.`

Many discussions with family.  One email conversation with a priest.  In a casual conversation with Bob, he mentioned that the brother of our neighbor across the street had undergone a transplant with similar odds.  He chose to proceed for an amazing (to me) reason: to be a lab rat.  He knew he would not survive the transplant.  He was right.  But he did it for the knowledge that would be gained and useful to future patients.

Bingo!  Completely captured my heart and imagination.  My decision was made.

In mid-August of 2013, I entered the Barbara Ann Karmanos Cancer Center in Detroit.  Eight days of “conditioning” with some of the strongest chemo known to humankind, then two days of transplantation.  Then all hell broke loose.  I have very little memory of those days.  I was that out of it.  I apparently had conversations with Bob.  I don’t know.

Here was the knowledge they had not had before.

Multiple times per day, a neurologist or neurological resident or intern came into my room to question me.  What day is this?  Do you know where you are?  What county?  Who’s the President?  They always, always ended with “Can you spell ‘world’ backwards?”

Well.  No, actually.  Not only could I not spell world backwards, but I couldn’t even put together the words to say that I couldn’t.

This went on for days.

Finally, one morning when Bob was visiting me, the entire Neurology department of Wayne State University walked into my room, along with my transplant doctor – Head of the Department of Haematology and Stem Cell and Bone Marrow Transplants.  About 15 people in all.  Again, with the questions.  I.  Was.  Pissed.  When we got to world-spelled-backwards, I could no longer contain my frustration.  I said “I’m tempted to say:              W O R L D   B A C K W A R D S”.  I caught the notoriously humorless Karmanos staff off guard.  Some needed to leave my room to have a laughing fit.  I was deemed on the mend.

But that wasn’t – and isn’t – true.

After about 5 weeks in Karmanos, I was allowed to go home.  But four+ years later, I continue to have random “bad world-spelled-backwards days”.  Sometimes it will be totally losing the words I need to express a simple thought.  Sometimes it is trying to make sense of something I have read.  Some days, I know driving my beloved Mustang convertible would be a bad idea.  Today, I couldn’t for the life of me remember how to stitch binding to wind up with mitered corners on a quilt.

You cannot imagine how totally discouraging and frustrating that is for me.  And I’m not going to go into the TIA (mini stroke) I had last summer, which further exacerbated the whole situation.

Most of my family and friends know not to expect too much from me when I tell them I am having a bad world-spelled-backwards day.  But no one really knows what it is like.

This is part of my suck-y “new normal”.  And I know this sounds like whining.  When you can’t spell a five-letter word backwards, maybe you will understand.

I try

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My house is loaded with quilts.  Some I made, some I purchased, some were made by friends, some were made by women far across the sea.  Some are on beds; some are draped across chairs or couches; some are used as table coverings; some are hanging in various ways, in various rooms.  A few are strictly for the use of Sheiky…the dog.  And then, there are numerous UFOs – the quilting term for those projects that made it to a certain point, and reside there, possibly forever – UnFinished Objects.

I am an enthusiastic quilter, as my fabric stash demonstrates.  I have made incredibly complex patterns, and turned simple patterns into something complex due to my fabric choices.

I’m good at choosing fabric and stitching the quilt tops.  At least, I was, prior to a brain problem during the stem cell transplant in 2013, and the TIA last summer.  What I am not good at is putting the top together with the batting and the backing – called the quilt sandwich, and then stitching it all together – called the quilting.

Truthfully, when it comes to the actual quilting………………I suck.

Once or twice, I have taken my quilt top and backing to a quilt shop, and had them quilt it for me, on a machine called a longarm.  And I foresee this happening more frequently, although it is a pricey option, because:

I still want to quilt.

I’m not good at one major part of the process.  But the parts that I can do make me happy, most of the time.  Notice that I said “most” of the time.  I have been working on a monthly sew-along.  The pattern is extremely complex, and sometimes my brain just can’t figure it out.  Then, quilting doesn’t make me happy.

Sometimes I need to take a break, and pick up a totally different craft.  Most of those I do with an amateurish outcome.

Nevertheless, she persisted.

 

Time Changes

I hear, or read of, people who have had some life-threatening experience – be it illness or accident or natural disaster – who then see time completely differently.  I confess.  I am one of them…sorta.

I am married to an ardent amateur astronomer.  I gave birth to a daughter whose Bachelor DegreeS were in Astronomy, Physics, and Astrophysics.  Both of them are good teachers.  But I just cannot understand (insert deep male echo chamber voice):

SPACETIME

I frequently fall asleep to the bedroom television tuned to the Science Channel, only to wake in the middle of the night to some world-class astronomer talking about some facet of (spooky voice again):

SPACETIME

It’s not space.  It’s not time.  It’s both.  At the same time.  Or neither.  Or, or, or…

Or my alarm clock.

Mine died several months ago, and Bob bought one for me from K Mart.  From the first time we plugged it in, the time it displayed was inexplicable.  Hours fast, then slow.  Changing by tens of minutes one way or another, then back to hours.  Other than when we first set it, it has never maintained the correct time.

The obvious solution would have been to take it back for a new one.  Nope.  I have decided that my alarm clock actually exists in some other dimension, and the time it displays is actually (voice):

SPACETIME

While Bob and Clair would discuss something scientific, Bob3 (son – I’ll explain another time) and I would invent fantasies or poetry.  Allegory and metaphor.  It was, and continues to be, the only way he and I could make sense of the science and math.

So “September Song”, whose lyrics name this blog.  (And please excuse the commercial at the beginning of the video.  I’m just learning this stuff – oh, Sophie!  Where are you when I need your 6-year-old computer expertise?)

I have always found it poignant.  More so, since the cancer.  But, is it a “long, long time” or do the “days dwindle down”?

As snobby as it sounds, time is just a human construct.  Otherwise, we would keep time based on sunrise and sunset – without segmenting the seasonal differences.  Parts of my life speed on.  I was told the average survival for my type of cancer was 5 years, and the average survival for the stem cell transplant was 4 years.  I am beyond both deadlines, and still here.  On the other hand, worries about my family, my country, the planet seem to go on and on, endlessly.  My life is fading fast and ploddingly slow at one and the same time.

SPACETIME

 

…these few precious days

“…that’s just the way it is with the new normal.”

What the heck does that mean?

There is a current television commercial for a Detroit hospital, featuring a woman fully made up, with a lovely head of long-ish hair.  The commercial says that the hospital found “her” cancer.  In fact, it is not “her” cancer.  Rather, “she” is cancer’s.  Even after treatment is declared a success, she will always be cancer’s.  That’s just the way it is with the new normal.  And not to put too depressing a spin on it, but facing one’s mortality changes a person.  Am I frightened of the future?  NO!  But I do understand that there are fewer days to my future than there once were.  There are things I need to document.  Hence, this blog.

 

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