Thursday, June 29, 2017

Let The Games Begin

Not quite 2 weeks after the PSA that came back elevated, a second reveals it has risen 0.03 already.  Now .25.  Quick for prostate cancer.   Pelvic MRI tomorrow, consult with radiation oncologist next week.  Meeting with urologist after results of MRI are in.  Dr. Knoedler, the urologist, is well-reputed and has a relationship with Brad's brother (prior to Brad becoming a patient) and to Brad himself outside of this.  So Brad feels good about the doc not thinking of him as 'just another patient'.   But honestly, I know my young patients at the hospital stick with me,  I'm pretty sure Brad's situation would stick with Dr. Knoedler regardless.

We had gotten to a pretty good place the last several days.  Matter of fact, feeling like we can handle radiation, staying present with all the goings on here (my parents visit, Cate's birthday).  But this conversation rattled us both.  Words like "aggressive, concerned" and "50/50 chance".  We were told there was a 50/50 chance the cancer would return in 10 years after radical prostectomy.   It's been 2 1/2.  Now we're being told there's a 50/50 chance radiation will kill it.   I'm sorry, but WTH?!  I would have thought radiation would have a greater return, you know?

I had written a slew of fearful thoughts here, along with a few other negative-ish comments throughout, and this morning am editing and deleting them, while still trying to stay true to the situation.  My beloved friend, a ridiculously wise and powerful Type I diabetic who has undergone 3 organ transplants, multiple heart surgeries, lymphoma, a myriad of other issues and oh, is also completely blind, strongly encouraged me not to write down the specifics of my fears.  Writing them down, having others read them and react in kind, all that only draws energy to what we don't want.  Stirs up the universe's creative energy in the wrong direction, you know?

We will always think of this in association with Cate's 5th birthday, no matter the road from here.   Certain events creating the Before-s and Afters of our lives.  Before Anna, After Anna.  Before living children, After.  Before....After.   I've been through enough of life to know it never stays the same, there are unforeseen surprises and scenes you dare hope for that come true...and ones you pray never do.   My mother's response to Brad's news was to say something along the lines of "How much crap can happen to one family?"   But my answer was "But so much good has happened too.   Cate, Matt.  Our home, Brad's job, everything about the last 5 years.  This is Life.  The good with the bad."

I believe radiation therapy will give us time.  I'm going to hold the vision of a very, long, time.

Please join me in that vision!

Wednesday, June 21, 2017

How 0.22 can change your life.'s back.


It's an infinitesimal number, really.   Teeny.  One would think, inconsequential.

Except when that number is supposed to be 0.00, or "undetectable", as it has been for the last 2 1/2 years.

Yesterday Brad found out his PSA level was 0.22.  An elevated hormone showing up in his blood from a piece of his body that's no longer there.  Which means one thing.

Cancer is back.

His urologist is out of town until Monday and so we won't know his opinion or next steps until at least then (which is also the date we're throwing Cate's 5th birthday party, so that won't be surreal at all).  We suspect another blood draw to re-test and a bone scan to start.  The hope is radiation to the surrounding prostate tissue and that will be it.  Done.  Onto gymnastics lessons and hockey and plays and all those ordinary moments that make life extraordinary.

Last night I felt like I was sputtering and in danger of drowning on oxygen, very nearly sending out a cut-to-the-chase email to our tribe.  That knee jerk response of wanting to know you've got people holding onto your hand just enough that you can keep your face above water.  But maybe in a show of slight personal development, I didn't and decided to write here instead, as those who read this are the ones who can probably handle me at this early stage and throughout whatever is next.

Shit, you guys.  Just...all the swear words.

Wednesday, May 31, 2017

So this happened...

This was just not on my radar yet.

So Catherine has been talking about boys and friends and boyfriends and it's all mixed up depending on the day, sometimes the hour.   In one conversation they are her boys that are friends but not boyfriends.  Other times she loves them but just likes her teachers, showing some awareness about a distinction between the two, and indicating some level of knowing there's a romantic bent to the title of 'boyfriend'.

So we had one of the two boys she adores over today for a playdate.  He's been here before with his Mom, but today came alone.  For the sake of privacy, let's call him Jack.   On Jack's last visit his mother shared with me he has an obsession with diapers (???...whatever!) and of course we have a lot of those around with Matthew.  We currently have a stash behind the couch in the living room.  So she and Jack have been thick as thieves all year, and today were playing downstairs for a few hours.   In the first hour or so I knew they were sneaking into the diapers and sneaking back downstairs.  I told them it was fine to play with them, they didn't have to be sneaky about it, I wasn't and wouldn't get mad or anything.  A little while later I noticed it was pret-ty darn quiet down there.   So I went to check it out.  Jack was in the puppet playhouse and Cate just outside it.  I asked if everything was okay and they said it was, and I made a lighthearted reminder about what I always say when the kids are quiet..."trouble is brewing, right?"   Cate gave a little smile like she didn't quite know what to do with that information as it applied to her and not Matthew (which is who we're usually talking about.)
So I went back upstairs, no big shake.
At some point in there they said they were trying on diapers.  Whatev, right?  I figured they meant on the dolls, or over their clothes, didn't think much of it.

Later I hear some of their conversation as they're playing house, and it's so cute I go down to take a picture of whatever they're doing.  Cate is now in a cowgirl vest and tutu, so she had obviously changed her clothes.  Almost assuredly right in front of Jack, because that's how she rolls.  In her underwear most of the time, or changing outfits left and right.  Particularly dress up clothes with friends over.  Note to self, have a conversation about changing outfits with male friends over.
They were playing house, being darling.
Soon after I hear her going on about pretending to get hair cuts and then "OK, you can be an astronaut AND a hair cutter!  Then you can give my hair a trim when we're in outer space, OK?"
A few minutes after that, "No Jack!  You play what I want to play or I'M not going to play with YOU!"  Aaaaand then, tears and "Mom, Jack won't play with me, I want you to play with me!"
So she tells me all about how she wants Jack to brush her hair and style it and play dress up and I explain to her that honey, boys just don't often like to do that kind of thing.  And oh by the way, you are now totally naked and OMG GO PUT SOME CLOTHES ON!!!!  Wth?!  But being naked is a nonissue and this hair business is really upsetting, so in her world my priorities are totally upside-down.

After convincing her to go get some clothes on I find Jack downstairs basically hiding behind the puppet house in a corner.   Poor, traumatized kid.  I mention that Catherine was being pretty darn bossy.   And how that's not really fun to be around.  He agreed on both counts.  We didn't mention the nakedness.
"Science-ing" brought both kids around and all was again well (baking soda + vinegar = volcanos, food coloring + just about anything = my mom doesn't let me do this at my house, super cool!).    Eventually there was a baking pan full of water and about 4 bottles of food coloring.   Jack was using a small baster that came with the science kit to suck up the liquid and squirt it back out.  I hear Catherine say "It sounds like pee!"  giggle giggle.  Then I hear, "It looks like your penis."  I must have made a sound because she looks at me at says, "You know, the long part."  Yep, I say, because of course she means the long part where the pee comes out.  But, holy hell.  Jack didn't say a word and I couldn't see his face, so who knows what was going on for that poor child.

Later, I'm telling his mother about this because it sounds like hilarious stuff kids say and she's laughing like crazy.  Not until I go inside to look for some of the items Jack brought over to make sure they go home with him did it hit me....wait a damn second.  Diapers.  Trying them on.  Cate changing clothes.  Naked.  It looks like your penis.


So hours later, this evening, I casually and lightheartedly ask Cate if she and Jack were playing with diapers or actually trying them on.  She admits they were trying them on.  I ask if they saw each others privates and let's just say yes, they did.  She gave me specifics on what he saw and what she did.  Still super casual as if this must have been silly and didn't they have fun together today, I ask if they touched each other's privates or just looked.   The latter, thank you sweet Jesus.

Folks...I just did not know we were here.
I thought we were still in "Isn't this sweet, kids just being kids and unfazed by gender differences, just having fun and enjoying each other for who they are" glory!  You know, INNOCENCE.  And it's still innocent for all practical purposes.  But innocent doesn't mean appropriate.   And there were definite inappropriate portions of today's playtime occurring while mama was upstairs dealing with being double billed for our security system over the last 3 years.

Gonna be some new rules in town, kiddo.
1)  Clothes on with company.   All the time.
2)  If you're going to change clothes, do it where they can't see you.  Preferably in another room with the door mostly closed.  Modesty, girl.
3)  No showing others your privates.  Only to parents (or a doctor) if we or you suspect a problem down under.
4)  What am I missing, ladies?  It's now 12:45 am and I'm tired tired tired, but....holy cow.  Holy cow.

Sunday, May 14, 2017

Seven years past Italy

My first Mother's Day after Anna died Brad and I went to Italy.   He still had flight benefits to fly standby for free at the time, and I just wanted to escape.  It had only been 5 months.  So off we went, and it was beautiful, everything we all imagine Italy to be.  Having been before, this time we went south from Rome to Sorrento, Capri and beyond.  Took in the stark beauty of the ocean against the dramatic cliffs, my favorite little old men with their canes and caps trolling terraced olive groves, the haughtiness of Capri regulars against we lowly tourists.   Pizza, pasta, lattes.
We pulled our suitcases over cobbled streets, hauled them up staircases when the hotel had no elevator, arranged ferries and busses and found our way through quintessential Italian coastal towns.   We must have interacted with and passed by at least 3,000 people.  How is it then, that no one acknowledged our very guts copiously hanging from our open torsos?   How is it no one saw our shredded hearts?   Noticed the tears that threatened to pour virtually every moment?   For when I look at those pictures, it's all I see.   Broken people.  Moving and pretending and persevering for the sake of the other.  
When talking to other parents of recent child loss about the decision to go Italy for Mother's Day, we always say "You're still going to be miserable, but you're miserable in Italy", as if that somehow makes it more bearable.  It doesn't, but the laughter we so often get from them is high praise, when laughter is the very antithesis to their being at that stage.

Which brings me to today.   Seven years later.   I'm filled with my two incredible living children and as contented as I'd imagined I'd be long before infertility and infant death entered my world.  And I am the  very definition of amazed that this is so.   With 100% certainty I can tell you that seven years ago I could not would not have imagined a Mother's Day with virtually no feelings of sadness or grief.  (Though the act of writing this is bringing some up.)   For years I needed the sadness.  I wanted it.  It was how I proved to myself and others that she still matters.  Now I can own her existence as matter of factly as I can my living children.  

This weekend is filled with happiness and gratitude and glorying in the un-promised result of our clinging to this vision.   To be sure, our family is the picture of getting what you wanted in a way you never could have imagined.  We eschewed donor egg and now have the most amazing little blue eyed blonde of another woman's genetic material, whom I could not possibly cherish or love more fiercely.  We have a darling, precocious son with dancing brown eyes, born of another couple whom I desperately hope will become an interactive part of our extended family over the years.   And I have a dead daughter with my hair, my nose, who makes herself known to me at 11:26 every so often, AM or PM.   Or at some random actual time of the day on a clock with the wrong time, reading 11:26.   A girl I think of every single day, often several times a day.   A girl with whom I keep at a safe distance from my psyche often times, the same way I keep God.  If I were to step into their presence too much, go and actually spend time with them, well, my constructed functioning world would crumble.  And I've spent so much time amongst the rubble these last years, I just choose not to right now.  

Today I get to enjoy the culmination of our journey.  My three children.  My beautiful daughter of soul and spirit involved in her own journey to which I am not privy on this plane, my sassy strong-willed moody funny introspective dramatic precious girl, and my bright outside-loving climbing talking happy curly-haired son.

I am a lucky woman indeed.  Luck.  Ha!  Let me rephrase.  I am a woman who recognizes this life is not guaranteed.    I am a woman who gutted through and survived horrible scenes and experiences and still held the vision of this life.  I am a woman rejoicing.  I am a woman victorious!  I am a Mommy.

Happy Mother's Day to me, to you, and to all the women with mama hearts whose children are not here, whether taken or not yet created…. you are all on my heart today.

Friday, March 3, 2017

Cheese and crackers

Tonight I cut my son's hair...

… all Brittany Spears 2007 meltdown style.   

As in, I feel like my cheese might actually be sliding off my cracker.   Just enough so that I notice but no one else might be clueing in just yet.  For the record his hair is unruly with some curl and waves and we agreed at dinner it was getting long.  So while he was once more playing with a teeny stream of running water and dirty dishes in the sink after dinner, I just…started cutting.  Only the right side, the front and a snip or two at the nape of his neck.  The left side is largely untouched and there's a great tuft of curl on top to the back.  He's 18 months old.  My time to do such things without repercussion from him is limited.  It looks pretty terrible.  But whatever, it'll grow back, right?  The thing that's kind of scary is how detached from it I feel.  

There's also a round dent in the drywall of my bedroom from driving my heel into it this morning.  I figured that was a better choice than getting physical with or around my children, whom I'd just left in the room across the hall because I JUST COULDN'T EVEN.   Not for one more second could I sanely  handle the 12th whine/cry/tattle/scream in less than 5 minutes due to a 18 month old testing his interaction skills and a 4 1/2 year old who doesn't appreciate his style (and who is recovering from the flu, so admittedly not at the top of her patience game).   We'd only been up for the day for some 30 minutes at this point, mind you.  

December into early January was not so hot for me.  Grief, loneliness, isolation, illness (not me, the other three).  Things started looking up and feeling do-able again roughly mid-late January and we were looking forward to going to Arizona for a week to visit my folks.  Sunshine, some serious outdoor time for my gross motor savant of a son, some unadulterated grandma attention for my girl, and some girlfriend time back in Tucson sans children for me.  And then, the day before we were to leave…Influenza A stole our vacation.  Not me, the other three.   Which meant once again I was the one to single parent the kids while my husband was sick as well as care for him, then carry the lion's share of managing a sick 18 month old while still keeping life going for his big sister after hubby returned to work (until sister too succumbed).   Is it bad that I kind of kept hoping I would get it just so I could stay in bed all day and he would have to man the kids?   I can't be alone there, right?   All that said it could have been worse because Brad was home to help with the kids two more days than he otherwise would have been if we hadn't had vacation scheduled.  So in some respects, hey, I got lucky!!

But it was 11 full days of being inside with sick beings, leaving the house only to go to three doctor appointments (two with the kids) and transport my daughter to preschool 3 of those 11 days.   11 winter days no less, when you're not going to let your snotty coughing flu-ed up kid go outside in the cold and wind despite desperation for fresh air and change of scenery.  So today, with health by and large returned to said sickies, I got a babysitter from 9:00-2:00.  OUTTA here, baby!   

Gym.  Walk/run/backward walk 2 miles.  Good!  No reflection of my previous running years, but a start nonetheless.   Mahi Mahi tacos at the gym's cafe - mmmm.   
Time to Be.  
Confronted by utter lack of girlfriends or social community.  By desire to be part of a group of girls from ECFE (but not, in some part because I'm a tough take?) or a particular set of preschool moms (they all live in the same neighborhood and included me at one point, but…).   I miss graduate school.  I miss having a flock of women to laugh with, talk to, collude, bitch, celebrate and mourn with.  I did not expect motherhood to be so very isolating.  Is it current culture?  Is it me?  Is it lack of effort or that I'm truly an odd duck?  Do I turn people off, or do they not quite know what to do with me?  Make of me?  

I came across this book yesterday, Women Are Scary by Melanie Dale.  I bought the ebook (on sale for $1.99!) but have only had a chance to read the online excerpt last night.  That alone brought some solace and (thank god) much-needed laughter!   I love my kids, but more and more I see that the life I've created is all about my kids.  (Which for a long time was fine, no doubt about it.  Welcome, even.)  The Me part of my life is all but nonexistent.  The friend part of that Me?  Cue the sound of wind through the barren trees.  

"We drive our cars into garages and close the doors behind us, and we can go days and weeks without interacting with the neighbors unless we’re intentional about making friends."  You called it, Melanie.  Oft occurring even in warmer seasons but in Minnesota winters?  Fuggedaboudit.

"Moms are everywhere, and most of us are a little bit lonely and starved for adult conversation. If you work outside of the home, you may spend time with other adults professionally, but you still need other moms to talk to. Stay-at-home moms just need people to talk to, period."  Sooo validating.  

"I want someone who cackles and speaks truth and is either a total geek or glad I am. I want a mama who will tell me what I need to hear, not just what I want to hear. And through all that scary intensity, I want her to love me."  
Yes.  Yes, please.  

And this…the attempts to connect that fizzle or straight up bomb.  This is a version of what I fear happened with the key preschool mom within the aforementioned neighborhood group.  She and her daughter came over one day and during the course of talking about doing things alone (she would never camp alone - I loved it, she would never eat alone in a restaurant -no problem here), I brought up Anna in the "oh man, I cried in public all the time.  Went to the Galleria in my pj's.  Pretty much don't care what anyone thinks after that" genre.  And somewhere in there, in my rambling or unconscious rising emotional intensity that seems to accompany Anna despite myself, I think I lost her. Somewhere I think she decided I wasn't her flavor.  So this little tidbit from Melanie's book was balm to my soul.

"Have you ever tried to befriend another mom only to have it die an awkward little death?  Just me? My kids were all born on different continents, so my strikeouts usually go something like this:
Me: Hi, I’m Melanie. I’m new here. Have you been coming here long?
Other Mom:   Oh, hi, I’m OM. Yeah, we’ve been doing this for a while (indicates many other friends nearby ).
Me: Oh, cool. Which kids are yours?
 OM: Penelope over there. Who are your kids?
Me: Those three over there.
OM: Are they all three yours?
Me: Yep!
OM: I mean, are they all your own?
Me: Uh-huh. I own them all.
OM: I mean, are they your real kids?
Me: Yes. They are all real. No blow-up dolls in the bunch.
OM: The two oldest are yours and where’s the youngest one from?
Me:  Two of them are adopted and one was created in a lab.
OM: Um . . .
Me: The oldest one, with hair identical to mine, is adopted from Latvia and our newest child, oldest and newest, haha.  The middle child, with blond hair and blue eyes who looks nothing like me, is biologically related to me. The youngest one is adopted from Ethiopia.
OM: Ohhhhh. My brother-in-law went on a mission trip onetime . . . ohhhh . . . I forget where . . . Nicaragua.
Me: Okay, well, it was really nice to meet you!"

Yep.  That about covers it!   

And now it is late and I must go to bed.  Thanks for letting me journal here.  Any mamas who might want to be my friend after stumbling across this?  Comment away.