The Clinical Trial

Everyone is dying. Some of us are just doing it faster than others.

Today was exhausting. We were up at 6:00 am to eat breakfast at the hotel. Mom's CT was at 9 and she was supposed to be done eating at least 2 hours before.

So, 6:30 am breakfast it was. At 8:15 am she had a blood draw and urine analysis. They were late. This should have been my first omen for how the day would go. They are never late at Mayo. 

It was 9:00 am on the dot when she got done. As I wheeled her as quickly as I could to the building next door she casually mentioned that she couldn't really full her urine cup. Omen #2. She has lymphoma. She can always fill a urine cup in the morning. 

We made it to her CT by 9:10. They didn't call her name until 9:30. Late again. They gave her her contrast. Two bottles to drink. One by 10 & the 2nd by 10:20 am. Her ECG was scheduled at 10:20. Not happening. 

Her CT finished up around 10:40 and we hussled over to her ECG. About 11:15 all her testing was finally over.

We grabbed some lunch at a nearby restaurant and then settled in to the waiting room for an hour before she met with the clinical trial team.

First it was the nurse who broke the news that all her tests looked great except her kidney function. Those levels were too high. Was she dehydrated? We weren't sure. But there was bacteria in her urine. The start of a UTI? Perhaps.

This was strike 1, but not necessarily a deal breaker. Push fluids, take antibiotics, & retest on Friday. Still start the trial on Monday.

Then came the real blow. The nurse came back to drop the bomb. The biopsy sample they did on 01/08 at home did not contain enough tumor tissue for them to test. They were going to try to re-run the test but the most likely scenario: she will have to have a new biopsy.

This pushes her start date back to 03/04 at a minimum. This is best case scenario. Otherwise it could be 03/11 before she can start. Which means some tests that only last 14 days fir the purpose of this study may also have to be redone.

We left Mayo about 4 pm feeling completely defeated. Her scans show the tumors are continuing to grow,  only millimeters, but still growing.

But more than that, at least for mom, it's the constant pain and the still not knowing if there's a possible treatment in sight.

She cried most if the way home. Wouldn't talk when her best friend or my sister called.

She's tired. We're all tired.

I'm hoping a good night's sleep will give us all some clarity and perspective. One foot in front of the other. One day at a time.

The Process of Dying

 I've been away too long to try to update this space in any sort of manner.  Over 10 years of things and life has happened.  However, these last 7 weeks have really thrown us all for a loop and it's just made me think about how I need a space to just write it all down.

I'm fairly certain no one in my current life even knows this space exists and if they did know at some point, they sure aren't looking for new content here.  Which is, for the time being, probably all for the best.  Just writing out into the great unknown seems like the best course of action for right now.

So, why am I here?  My mother is dying.  Well, she has been for quite a while now, but things just sort of took a nose dive a little over 7 weeks ago.  And as I'm walking this road I'm finding that this process is often mis-understood by lots of people.

When she nose dived on the 29th of December, I took a partial leave of absence from my job.  In the past 7 weeks she hasn't really gotten better.  Just less critical.  However, it feels like to some people in my life, she's either actively dying or she's fine.  This lingering in the middle is what no one seems to understand.

You've got the people who try to be nice with the, "I hope she gets better soon."  My gut punch response is always, she has stage 4 cancer, there's not really any "getting better" at this point.  However, no one wants to drag people who are just trying to be nice into that so I just nod & smile and say thank you.

Then there's the people who feel like since she's not actively dying I should be fine to be back to life as normal.  I don't know how to get that camp of people to understand that this process could be months.  And in those months, no, I can't make plans.  No, I have NO idea what tomorrow will bring.  Everything right now is day by day.

Currently, I'm sitting in a hotel room in Rodchester, MN waiting to go with her and my dad to a series of tests tomorrow to determine if she is able to participate in a clinical trial.  A last ditch effort to buy her some more time earth side to see and do a few more things before she is called home to be with God.

Yesterday morning when I woke up, none of this was planned.  In fact, I didn't find out for sure that I was coming with them until about 6:30 pm last night.  That's what I mean about minute to minute, moment to moment.

And mentally, that part is exhausting.  I'm not, by my nature, a care taker.  I'm more of a task management person.  This, can't be managed.  Some days are good days.  Some days, she's in a lot of pain and I'm babysitting a 72 year old, highly medicated woman who basically is like a drunken toddler.

For a little over 7 weeks it has been complete crisis management in my world and somewhere along the way, people sort of think it should be over.  That the "crisis" part was the first week or two weeks.  Now I should be back to normal right?

Let me tell you, I couldn't be further from normal at this point.  I have, at least, for the time being, found a slight balance in my now two full time jobs and part time care giving.  I bounce from place to place all day long and then collapse into bed at night and do it all over again the next day.

I guess if there's a point to be had in this post it's that dying doesn't always happen over night.  Sometimes it takes days, weeks, months or even years.  And in that time, depending on the situation, it can be a long, drawn out process of one crisis after another.  Our medical and personal time off policies in this country do not, at all, account for this.  You get bereavement leave of a few days.  You get PTO of a few weeks, what happens when this process drags on longer than that.  If my job wasn't so flexible what would happen is I would either be fired or not be able to care for my ailing parent the way I best see fit.  And something about that, just doesn't seem right.

It's 10:36.  They want to eat breakfast at 6:30 tomorrow morning so I suppose I should wrap it up.  I'll be back I'm sure.  Maybe give at least a brief synopsis of the last 7 weeks.  Sending this out into the ether is, I'm hoping, going to be my next post title.  The process of staying sane.  :-)

The Kid

This:

20 Things Every Parent Should Here

#2 - We all struggle. Every parent. Everywhere. We all second-guess ourselves. And we all want to quit sometimes. Hold the good times close, and when things are tough, remember “this, too, shall pass.”

Right now things in our house are tough.  This entire week has been tough.  Something is wrong with Zack and none of us know what it is and none of us know how to fix it.  And the struggle through it has been SOO hard on all of us.

Jim and I try to reconnect at the end of every day.  To go to bed in each others arms.  To not make this a struggle between the two of us but a united two person front but it is hard.

He is acting out right now in a way we have never seen.  He is lying and sneaking and vandalizing and stealing. 

None of these things are his normal behaviors. 

None of these things we have ever seen before.

All of them came on so fast and so suddenly we are all (his teacher, the principal, the guidance counselor, us) left with our heads spinning wondering what we missed.  What has gone wrong?

We have asked questions, talked to him, taken things away, offered him things.  He has been in the Principal's office multiple times.  He had to clean up the mess he made. He had to talk to the teacher, guidance counselor and principal about the things he took. He has had all his fun taken away, he has been sent to bed without dinner, he has been yelled at. 

None of it is working.

None of it has made one bit of difference.

So we are left scratching our spinning heads and clawing at the side of the cliff hoping not to fall off.

I know we will figure it out.  I know something will click and we will get through this but right now, in the thick of it all it is hard.  It makes my heart heavy.

Emerging from Hiding

Hey, how's it going?

 

 

Where have you all been?

 

 

Me?  I've been at work.  Working, and working oh yeah and working some more.  I am just now starting to emerge from my post tax season haze just in time to deal with some serious behavior issues with Zack.

 

So, enjoy the pictures of the adorable one while I deal with the older, more obnoxious one.  We are all fine and well and will be back to check in, hopefully sooner rather than later. 

The trouble with Yellow

Zack's school works on a color chart.  Everyone starts on green and then the kids can either move down to yellow, orange and then red or move up to blue, pink and then I think purple.

Sometime during the down time of this blog Zack started school.  And it went badly.  REALLY badly.  So much so that I spent a large portion of time during my maternity leave asking his teacher if she would just like me to come sit in the classroom to help with him.

I didn't need to, but at least I offered.

During the period in which we were trying to get Zack some assistance we were LUCKY if he came home on yellow.  Most days it was red, sometimes Orange.  At one point during the transition I remember Jim offering to take him out to dinner if he wasn't below yellow.  Green was unattainable.

Yesterday his teacher emailed me to tell me he was having a rough week.  He had been on yellow 3 out of 4 days.  At first I was upset.  He has been doing so good.  On green for all of November and December.  What was going on?

And then it hit me.  Look at how far we have come.  From Green is never attainable to green is expected.

Then I cut my kid a little slack.  In December we went to Disney.  He was gone from the 7th - 14th.  He went back to school for three days, had two snow days and two weeks off.  He basically hasn't been in school since December 6th.

We've come a long way since September and if it takes him a few days to get back to golden I'm ok with that.  If next week is still rough, we will re-assess.

Mornings at Our House

Mornings are awful.  No matter what I do I can't seem to make it out the door on time.  Yesterday it was almost 9:00 when I got to work.

It all starts out so innocently.  Ava slept like crap so when the alarm went off at 6:00 I was not exactly bounding out of bed and down the stairs.  Then of course I have to pump.  She can't latch after 10 hours nor can she eat the 11 - 13 oz I produce.

So I pump and then I have to give her a bottle.  By this point it is 6:40.  Jim is out of the shower but Zack is still no where to be seen.  I go to put the milk in the fridge, realize that I have a bit too much so I need to freeze some so it doesn't go bad. 

Could it wait until tonight?  Of course.  Will I wait?  Of course not... why not add one more thing to my morning.  Measure, label, pour... 6:50.

Jim is leaving for work, still no Zack. 

Shower time, get out, baby is fussing, still no Zack.

Take Ava upstairs, coat her in lotion and get her dressed. Yell at Zack to get out of bed and get dressed, head down stairs.  7:20.

Give him a couple of pop-tarts, get some cereal ready for Ava for daycare tell him to hurry up and eat, keep hurrying we are going to be late. 7:35.

Crap, he needs a lunch for camp.  Pack his lunch.

Pack up the pump parts and the milk bottles and get coats on and the kid in the car seat.  7:50.

Drive right past his school, turn around.  Pull in, get out of the car, walk half way to building and realize that I forgot to give him his medicine.  Put kids back in the car and go back home.  8:15.

Give him his medicine, get him back to school, drop him off, get him signed in and coat and lunch put in appropriate place, get back in car to take Ava to school, 8:30.

Drop Ava off, talk to teacher about new diet of cereal, when to give it, how thick I make it, how much I give her, etc.  Realize I totally forgot her diapers on the chair in the kitchen.  Check her bin, realize she has four and there are three in the diaper bag.  Opt out of going BACK home and just pray she doesn't go through more than 7 diapers today. 8:45

Arrive at work, cussing as I sprint to my office.  Tomorrow will be different.  Tomorrow I will be faster.  Tomorrow I will wake up Zack and make Jim take him in.  :-)

Her Favorite Person

There is one person who can make her smile like this every time.

 

 

One person whom Ava thinks hung the moon and stars in the sky.

And it is not me....

And it is not Jim...

It is her big Brother.  Every moment of every day, he rocks her world.