A Good Outcome

I realize how naive this post may sound, but sometimes that’s my default.

WIth big things, giant life events, I’ve discovered that I have a habit of not entirely comprehending something until I sit with it, rest with it, and let it come to me through cracks in my consciousness.  I think I’ve learned to do this as I’ve aged, because if I don’t place myself in an almost meditative state when huge things happen I can have a tendency to overreact, and one true thing I’ve learned in 56 years is that as often as we praise resolute action, thoughtful response gives a better outcome.

Birth Stories
I first heard, “Outcome” as a euphemism for “Life or Death” when I was pregnant with Andy.  I had been taking birthing classes through the Methodist Hospital in Brooklyn, but Gerry was working evenings on some stagehand thing so my good friend, Sue Bakula, came with me as my partner.  The nurse teaching the class was dry but very funny, and stressed that we were all seeking a ‘positive outcome’ in our delivery, that was really the only thing that mattered.

It DID NOT MATTER if we had a birthing pool, or a no-med delivery, or every med in the dispensary pumped into our veins. It DID NOT MATTER if we followed our birthing plan, or threw it out the window. It DID NOT MATTER who was in the room with us, or who wasn’t, or whether we even LIKED our husband’s half sister who insisted on being there.

The only thing that mattered, that REALLY MATTERED, was the outcome. And we wanted a good one.

Her belief in showing us the finish line, and allowing us to use ANY tool within our resources to reach that line (or discard it half way through if it wasn’t working) was a revelation to me and increased my own pragmatism as a mom.  That nurse taught me a LOT more than just child birth tips, and I’ve been grateful to her long since.

And my friend, Sue? My friggin’ derelict, partner-in-crime, buddy from Ohio (we met when I was a grad school intern at The Great Lakes Theater Fest in Cleveland)  She was pure delight, and remains one of my most precious connections to an exciting time in my life.

Oddly, and wonderfully, when we were ‘graduated’ from our childbirth class we were given pretty certificates of completion. Mine was filled out exactly as you’d hope, my name, the dates, etc.

Susan’s, however, was inexplicably made out in the name of Scott Bakula (Sue’s last name is also Bakula, but she pronounces it differently) and THAT was the icing on the cake.  Just so’s you know, officially, I was accompanied in my child birth classes by Scott Bakula.  I’m just THAT special.  When we showed it to the nurse she blushed and laughed and said, “Oh good heavens, I was watching TV while I filled that out and Mr. & Mrs Smith was on…”  What a fun and happy mistake.  She offered to correct it, but we loved it and kept it!

Non Birth Stories
After childbirth, the most life-shaking thing to happen to me, personally, was the discovery of a huge tumor on my ovary about a year after Max was born.  Because of the sketchy nature of US health insurance then (and today) I was—once again—at the point of losing health insurance for some insane reason.  Money, most likely.

But before I lost my insurance I went to get complete check ups, just so’s I knew what was stewing around in my body when I wasn’t covered.  And this GIGANTIC tumor was discovered.  It turned out to be benign, but “pre-cancerous”, and my very kind and wonderful OB/Gyn (a friend of the family) recommended that I have a radical hysterectomy because, as she said, “If we do this, you’ll lose your reproduction.  If we just remove the tumor and it is the start of ovarian cancer and we don’t get it, you’ll lose your life AND everything your family owns to pay for it.”  And she wasn’t wrong.

I love kids, I always wanted several. The fact that I have TWO children is a bonus, and I realize exactly how fortunate I am.  It seems in our family we just can’t have children very easily.  Aunt Wanda had two children (my cousins Tommy & Jan) but neither of them could have kids.  That happens over and over in our family, the line just — stops.  At the point I was born in 1961, I would the the LAST baby born in the immediate family until Andy (née Hannah) was born in 1996.  Babies are very precious in our family.

SO when I realized that a radical hysterectomy would mean no more chances at kids, I was sad.  But I was realistic.  Could we even AFFORD a third child when we couldn’t afford health insurance?  Probably not.  We had two good ones, we were lucky, so I figured the best thing was to move ahead and not look back.

Who knows how life might have been different if another pregnancy was in the cards for me, whether it would have been sweeter or more painful, but I know it would have been more complicated.  And with the decade ahead of us, less complication would be better.  The radical hysto was FAR and AWAY the best outcome we could have hoped for.

Death Stories
My own tumor seemed to mark the beginning of a period of death in my family that seems to hit a lot of folks when they reach a certain age.  It’s as if so many expiration dates hit all at once.  Within a few weeks of hearing about my tumor my mother discovered she had liver and lung cancer, and not long after that my cousin Tommy discovered fast moving cancer and was gone in a matter of months.

During this time I didn’t tell my family about my own growth, or the fact that I’d be having a hysterectomy when I retuned home.  Andy and Max had a nice, long visit with Grandma, which was exactly what was needed.  Telling mom that I wasn’t well seemed unimportant to the most important outcome, which was to allow my mother to be as peaceful and happy as she could be.

But peace wasn’t in her future, and — having been told that it would be perhaps 4 months or so before mom would be going into hospice — I left mom living with my brother Jimmy and his wife, Karen and went home for my own medical journey.  I had all the support I needed, it was important that mom wasn’t part of that support.  But I was scared, of course, and I don’t know if I was fully prepared for the ways a hysto would change a 40-year old woman’s life.  But that’s a different story for a different blog post.

Just about 4 months to the day from returning home I received a call from my brother’s line.  As I answered I just assumed, “Oh, that’s Jimmy calling to tell me that Mom’s condition has worsened and it’s time to begin thinking about palliative care.”

But it wasn’t. It was mom telling me that the previous evening Jimmy had passed away from a heart attack.  At age 45.  And it was exactly as heartbreaking for everyone as you would expect.

Back to Texas with only Andy this time. She was old enough to love and remember Uncle Jim, and I feel that funerals are part of life. Mom was shaken up, destroyed.  I know that parents shouldn’t have favorites, but the truth is, we do.  Not every favorite kid is ALWAYS the favorite, some are the favorite at being quiet with mom, or the favorite at running around and having a wild time with mom.

The word “favorite” is loaded, but since I grew out of adolescence I’d understood that my mother and my brother had a bond that was VERY special, and like nothing I would have with either.  It didn’t make me sad, or left out, but it WAS real, and something that was notable in our family.  Sadly, my father and I did not have an echoing ‘close bond’, so in many ways I felt like an outlier in my immediate family for much of my youth.

So when my mother lost her son, and went into hospice not long after, it seemed unnecessarily cruel of the universe to set those facts in that order.

The woman my mother shared her last room with was named Christine James. They only put the last names on the door, so mom’s room was emblazoned with James Modesitt. The name of both my father and my brother, and that fact made my mother happy and gave her a bit of peace. Odd, those things.

More Death Stories
Returning from Mom’s funeral, actually driving back from the graveyard, my dear cousin Jan—we were the nearest thing either of us would ever have to a sister—told me that she had found a lump in her breast and it seemed serious.

Jan’s mom and my mom were sisters, Wanda and Mabel. My mom was the older; hard working, keeping all the family pieces together when her own parents divorced and the family was split up during the depression. Aunt Wanda was younger, a bit more wild and carefree, but JUST as hard of a worker. Like so many families, we are grafters, my family, we define ourselves by how much work we’re able to get done.

So Jan and I , born 8 years apart, grew up VERY close.  I can say without hesitation that I loved my cousin Jan more than any other human being in the world for long, long periods of my life.  In a difficult family situation of my own, Jan was my ballast, but 500 miles away from Toledo, where I was raised.

Most Summers I spent huge swaths of time with Jan, driving around in her car, eating hot dogs at the A&W and swimming at the Parkersburg City Park Pool.  Drying off, roasting our never-to-tan-always-to-burn skin on a deck chair, we could look up across the street from the city park to Mt. Olivet cemetery and see where, one day, our parents and Jan would all be buried.

The source of Jan’s cancer, when it was finally discovered metastacized in her breast, was skin cancer.  I hate heat, I don’t like the sun very much, and I’ve raised my practically-see-through kids with the same loathing of sunburn that I had.  But Jan would get slightly darker than I could, so she was the sun worshipper in the family and I would sit in the shade and read a book.  Was this the beginning of her own cancer trip?  Who knows.

During Jan’s rather rapid illness Gerry and I made the decision to move to Minnesota, and in the course of that life adventure we discovered the cancer that would define our own lives and marriage for over a decade.  The drive from MN to WV became rather familiar to me, but not quite as familiar as the drive from our new home in St. Paul to the Mayo Clinic.

Jan passed. And not long after another cousin passed. And I felt like the angel of death. We discovered not long after that DuPont has been dumping C8 in the Ohio River near Parkersburg, causing MANY fast moving cancers in the area.  I can’t write about this with more anger than my fingers contain, so I’ll leave you with this article on my family’s home town and how unimportant people are when they’re poor.

Life Story
I don’t want to go into a long post about Gerry’s Multiple Myeloma journey, I’ve written about it at length in this blog, you can use the tag “Multiple Myeloma” to search out those posts.  But I will say that his own outcome has been so much more brilliant than we ever hoped.

At the outset we were given the only data that was then available on MM survival.  Since the disease usually affected folks in their 70’s & 80’s, life expectancy wasn’t long; we were told he may have 1 – 2 years, but they wanted to try a stem cell transplant and that might give him another 5 years.  Of course we said, “YES.”

It’s been 12 years, and every day is a gift (some just more nicely wrapped than others…)

And now I have a blood cancer, Lymphoma, which is so damned similar to Gerry’s that it’s freaky.  Even weirder, the pain that caused us to seek a diagnosis for Gerry in 2006 was centered around his T10 vertibrae, just like mine.  Now THAT is togetherness, we were definitely made for each other.

What will my outcome be? Probably good, they tell me, and that’s excellent!

Of course, I’m writing this on the morning of my final radiation treatment, before we’ve assessed how well that’s worked.  We will have to see if the tumor in my spine has shrunk as well as they’re hoping, see what the results are of other tests I’m having this week (two painful ones for which I’ve requested, and it appears they’ve grudgingly approved, stronger anesthetic than is usually given) 

All of this info has to be considered before I start with the chemo, so they can tailor the drugs to fight my own lymphoma in the most efficient way.  That’s the next big phase in this treatment, right now we’re looking at about a week of interim testing, evaluation and a bit of rest, which I could dearly use right about now.