Saturday, September 10, 2016

The Appointment

I have really struggled since my diagnosis in 2013.  The idea of dying and leaving my daughters behind just absolutely gutted me.  Before my surgery, the doctors were hopeful that it was contained to my appendix, in which case, the long term prognosis was very good.  If any of the cells get into the abdomen, though, it would be a very different story.  After my surgery, the pathology was unfortunately murky, and they were not able to tell me much about prognosis.  It's been very wait-and-see, with regular monitoring appointments.  In dealing with this uncertainty, I've had moments where I'm completely fine, and moments when I can't deal at all.  But when I think about the girls. . .that's the piece of it I just can't even contemplate.  I can't leave them.  I just can't.  They need me, and I need to be here for them.

So every time I have to go for a monitoring appointment, it is extremely stressful for me.  Will this be the moment when everything changes?  The weeks and days leading up to the appointment, the drive to a nearby city to see a specialist, that space in between the CT scan and the doctor delivering the news. . .it's just all really tough.

I am coming up on three years now.  It will be three years at Christmastime.  But I got sick of doing my appointments close to the holidays, because I felt like it cast a dark shadow over a time of year I love.  So I bumped the appointments, so they are no longer around the holidays.  It hasn't gotten any easier, these appointments, but at least they do not overshadow the most festive time of year.

Which is a long way of saying that I just had my monitoring appointment, and it went well.  There is no sign of a recurrence.  Or in my doctor's words, my "scans look good"  Every time she says it, I think she's saying my skin looks good.  So weird that I misheard her in that way.  But anyway, she also said this time that most recurrences are found in the first two years after this type of neoplasm.  They'll continue to monitor me for five years, and I won't be totally considered out of the woods until 10 years out.  It's the first time that I've really been able to exhale.  Maybe, just maybe, I can stop worrying about the "what ifs" and start living totally in the now.

Saturday, September 3, 2016

First Days of School and an ER Visit

I have mostly been doing okay with my impending medical appointment.  It really helped to write about it.  But honestly, that is not the only thing I've been having anxiety about.  The constant rushing around, the high cost of everything in America, the lack of family time, work stuff, the ordinary day-to-day stress of regular life. . .it has all felt oppressive lately.  I'm trying to step back a little bit and savor the moments, but it is tough.

Miss M had her first day of school this past week.  The school is an amazing fit.  She is a part of it, just like that.  It is everything that her school last year was not.  It's a bilingual school again, and she is cranky about having to do 50% of her time in Spanish, but I'm sure it's an effort after largely not having to speak it all summer.  She'll quickly settle in, I know, as her Spanish is good.  She has friends, and she comes home happy every day.  It's been perfectly seamless.

Before she went back to school, I had another week of vacation with the girls, which was lovely.  Unfortunately, SB fell at the playground and dislocated her elbow, which was high drama.  We had gone out to do a quick errand via public transportation, and then we got ice cream, and we were walking around and spotted a playground.  The girls begged to stop and play, and of course I let them.  I was sitting there in the sun, watching them play and truly just enjoying the moment.  As I watched Miss M, I heard a terrible noise come from SB, who had fallen while I wasn't paying attention to her.

I knew as soon as I heard the noise that it was bad.  She had tried to jump off a fairly low platform on the playground in order to reach the monkey bars, which had rings that dangled down.  She'd missed, and had landed with her arm underneath her and twisted backwards.  I ran over, and when I sort of lifted her torso off her arm, I could see that the bone was pushed out of place.  Where there should have been smooth lower arm skin, there was an extra fold.  I still cringe thinking about it.

I scooped her up and ran to the road nearby, which is a major thoroughfare.  I thought I'd be able to grab a cab, but after a few minutes, there were none in sight, so I ran over to a nearby hotel.  They kindly had their town car driver take us to the hospital, for which I will be eternally grateful.  Anyway, it all worked out fine.  The hospital had an amazing pediatric emergency room (which I didn't know existed--good to know!), and they were incredibly kind.  X-rays showed the arm wasn't broken.  They put it in a partial cast to immobilize it until we could see the ortho, and gave SB some morphine to make her comfortable.  It was all fine in the end.  Parenting!  It's not for the faint of heart.

When we followed up with the ortho a few days later, he concurred that the arm was not broken, and removed the cast.  Her arm was swollen to more than twice its normal size, and pretty bruised.  It's still pretty bruised, actually, but getting better.  Over the last week, the swelling has really come down, and it's bothering her less and less.  The ortho did want her in the sling until after Labor Day, but. . .SB had other ideas.  She has a crazy high pain threshold, so she just kept saying it didn't hurt.  Ah, my little wild woman.  Anyway, she's doing great, and I'm relieved it's not broken.

Sunday, August 28, 2016


I--CAN'T--SLEEP!!!!!  And it's making me crazy.  It's been getting increasingly worse.  First, I was falling asleep fine, but then waking for long stretches in the middle of the night.  Now, I can't get to sleep at all.  I am trying to figure out what is bothering me, what problem, what stress, I am holding too near.  But I can't put my finger on it.  It's everything.  It's nothing in particular.  It's 1:23 am and I've been in bed for hours, and I've not yet gone to sleep.

I have my next big checkup soon, to see if the cancer has come back.  Part of me thinks it has not, and part of me thinks so.  And I can't bear to think about it, and mostly, about what it will mean for our dear girls, if it has.  I hope, I pray, that it will never come back.  But I live in the grey no man's land of uncertainty, with a history of a rare disease, and bereft of doctors who can or will say much about what might happen next.  (This is not for lack of trying.  I'm being seen at a world-renowned facility.  There just are not a lot of cases like mine.  And in that regard I am lucky, because they caught it early, which means there is reason to hope.).

I think this is why I've been so fixated on next career moves lately.  Because I yearn to plan forward, to be able to say that YES, I will be here tomorrow, and the months and years after that. . .which none of us REALLY has the ability to say with certainty, but we THINK we do, and I yearn for that illusion again, the one that you have when you are young and healthy and invincible, and you think the night will never come for you.  And maybe I'm totally fine, in which case I should be out there thinking about career things and living my life.  And maybe I'm not, in which case, I shouldn't worry about the future, and should just be sucking the marrow out of the moment.

Hmmm.....maybe I should be sucking the marrow out of the moment either way.  Food for thought.

Maybe I'll try to meditate for a bit now, amongst the husband snores and sleeping child elbows.  Perhaps putting the fear into words has released me from its stranglehold.

Monday, August 22, 2016

Work, Work, Play

Things have been crazy again around here.  The girls stayed up in New England with T for a couple of weeks, while I had to come back here and work, work, work.  It was a long couple of weeks without them.  I thought I would try to accomplish a few projects around the house while they were gone, but it just didn't happen.  Instead, I worked.  This past week, I was in the office one night until nine and another until midnight.  Meanwhile, I was still being pressed to go on the business trip for two weeks (I'm not going!).  Sheer madness.

So as work craziness continues, I've been thinking about how best to manage career vs. family, professional life vs. personal.  There is the one job that I've had my eye on for a really long time, which MIGHT happen. . .but I'm still not convinced it's going to happen.  It's potentially worth holding out for, though, as the quality of life would likely be very good. There is another job that I've had my eye on that is right up my alley, but I think the hours would not be much of an improvement, and possibly would be worse.  Then, surprisingly, I got an email out of the blue about a third job I hadn't even contemplated--it's potentially interesting, and I'm still exploring it.

I've been procrastinating on actually submitting my materials on the second job, and after tinkering with my resume for hours tonight, I finally just decided not to apply.  My lack of enthusiasm in drafting my resume should tell me something.  It would be a fascinating job, and I would be really good at it. . .but it's just not what I need right now.  There are upsides to it (i.e., less moving around for my family--in my current field, moves are a necessary evil).  But, I. . .just can't.  I want to want it, because I know I would love it.  But my personal life needs something really different right now.

As for the third job. . .I'm still thinking.  There are upsides and there are downsides.

But for now, I'm on vacation with the girls--one final week of play before Miss M heads off to first grade, and SB to preschool.  It is so lovely to have them back home, and I'm thrilled to be able to spend time with them after the last few lonely, hectic weeks.

Monday, August 15, 2016

#Microblog Monday: Life Malnutrition

In recent weeks, life has slowed down a bit due to family vacations, and we've had a breather from our "regular" hamster-wheel routine of school/camp/commute/work/dinner/errands/kids activities/life/rinse-lather-repeat.  It's given me some space to step back and contemplate.  In short, with the slower pace of the last few weeks, I feel like I can breathe again.

This pace we are living at here in America is no good.  I have known it for a long while now, but this down time really made me realize that much as the body starts to eat into muscle while extremely calorie-starved, this life is eating away at my soul.  I am moving so fast trying to keep all of the balls in the air that I have pared the "me" parts of my life down to the bone.  There is nothing "extra" left, and I've realized that as I try to support my family financially, ensure that the kids are having the life I want for them, further my career, etc., etc., entire parts of me are being extinguished as I've moved into mere survival mode.

I'm trying to envision ways to find better balance, but it's incredibly hard.  I said "no" this week to a two week business trip that would have been a huge professional opportunity that could have led to other things--but would have meant missing Miss M's first day of school at her new school, and possibly also canceling my upcoming second week of vacation (which I wanted to take weeks ago, but was forced to push off because of other professional obligations).  Oh, and they only gave me two weeks' notice of the trip.

Was saying "no" a good idea?  Personally, yes; professionally no.  Is that "balance"?  I suppose that depends what happens from here. . .if I miss out on a professional opportunity that I'm currently seeking that would mean fewer hours, because I didn't take this trip, that would be a loss for all of us. . .but then there is the first day of school, which is something.  It MEANS something to be there in the morning and take her in.  It MEANS something to have this upcoming week of vacation together.  It MEANS something to be there at the end of the day to talk about how her day went, in person and not on FaceTime.  It MEANS something to tuck her in that first week.

The struggle continues.

Sunday, August 14, 2016

Health Update

First, my appointment regarding the genetic testing went WELL.  So well.  I didn't test positive for any genetic mutations, and there were no mutations at all of unknown significance--which is a grey area that can happen, where they know a gene isn't normal, but they can't tell you the significance of that mutation, because they don't yet know the impact.  Everything they looked at was NORMAL.

This was a huge, huge, huge relief, because they told me at my initial pre-testing appointment that the transmission rate for all of these things was 50%, and I was terrified about what this could have meant for the girls.  And oh yeah, me, too.  But, all was normal.  Sheer, sheer, relief.

I could tell in my appointment that they were a bit surprised, given my family history, that they didn't find any mutations.  They told me that they did a much broader panel for me than they normally do for most people--they tested for a pile of things.  In short, in the end, they said that the appendix thing that happened to me was just shit luck, as opposed to having a genetic underpinning.  They'd like me to come back in 5-7 years to update them on family history, if I have a spare minute.  And they want me to eat healthy.  :)

I'm still nervous about health stuff.  I have my regular re-screening in a few weeks re: the appendix thing.  I will be very nervous.  But for now, in this moment, all is okay.

Wednesday, July 27, 2016


Yesterday at 4:30 they called to tell me that the genetics testing was back, and they moved my appointment up to this afternoon. It was so unexpected and my appointment was still so far away that I had not even worried about the results much yet.

I'm on my way to the appointment now, and I am worried. It didn't help th public transportation here is a mess right now, and I missed the train I had planned to take. I had to pay a small pile of extra money to take the high speed train so that I can make my appointment, which is outside the city.

I am hoping for the best, because the alternative would really, really suck.