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.

Finding my Voice

Hello out there to anyone who is still reading.  I'm guessing 4 maybe 5 of you.  This place has sort of sat empty for far too long and I miss it.  I miss writing down what the kids did or are going to do.  I miss writing down the details I don't want to forget and I miss the interaction.

At the peak of this blog I had 50 people reading per day.  Now, 50 isn't a lot when you consider Dooce has what 50,000?  But to me, they were my 50 people.  People who loved me and wanted to share in my life.

So, for 2013, my goal is to try to find my voice here again.  To get back to writing and sharing and the whole blogging community.

I don't know how well I will do at it, but I'm going to try.  Will you join me on my journey?

Mornings with Ava

Every morning, sometime between 1:00 am and 4:00 am Ava wakes up.  She is hungry and that is the point at which, even if just for an hour, hunger wins over sleep.

This morning it was 1:37... but momma was tired... oh so tired.  So, I pulled her out of her co-sleeper and into bed with me.  She snuggled right in and the next thing I knew it was 3:50.

I looked down, realized that she seemed to be pretty well passed out and so I slid her over to her co-sleeper and debated on whether I could go another 2 hours before I pumped.  At 4:05 she answered that question for me so downstairs we went.

Every early morning is the same.  I lay her in the boppy with her binkie in her mouth and I pump.  If it has been anywhere longer than 3-4 hours she just chokes and spits so I just resign myself to pumping to save us both the trouble.

As I pump she patiently waits.  She will smile at me and sometimes coo or suck on her binkie and drift in and out of sleep.  As tired as I am, I love this time, just me an her.  Over the last almost four months her patience has astounded me.  Last night it had been somewhere around 9 hours since she had eaten yet never did she freak out.  Just watched me pump knowing that I would take care of her.  Knowing that, no matter what, mom would make it better.

At 4:45 I fell back into bed, too exhausted to be awake one minute longer and at 6:00 when the alarm went off I wanted nothing more than just to continue sleeping, so I did.  Finally at a little before 7:00 she was awake.  No crying, just a little bit of squawking to let me know it was time.

As I changed her to get her ready for daycare she smiled at me and cooed and I still, almost four months later, was amazed that they let me bring her home.  That this amazingly awesome child is mine and that I get to keep her.

Sometimes life is crazy and we spend all day running around but at night, it is quiet and calm.  Just me and her enjoying these little moments that will be gone all too soon.

Slap on the Wrist

A week ago FoTB had court.  He plead guilty to two class D felonies and last Tuesday was his sentencing.

Before he was sentenced, the state of Iowa did an investigation.  The Pre-sentencing investigator basically looks at the person's history, previous crimes, etc and recommends what their sentence should be.  The pre-sentencing investigator said that he has a high instance of recidivism and that he should be sentenced to prison.

My parents and I went to the hearing.  Because he stole from them, they were both allowed to give a statement.  They both said he should go to prison.

The county attorney came up to us before the sentencing and he told us he ALSO thought that FoTB should be given prison time.

The judge gave him two years of probation and another year long stint in his 10th, or 11th or hell, I can't remember how many treatment centers.  Seriously?

In our state right now there is a high profile case of a former police officer who was just arrested again for cutting off his ankle bracelet.  The first time he was sentenced the judge gave him a 16 1/2 year sentence and they suspended it and gave him 3 years of probation.  From what I understand he is now going to have to do his 16 1/2 year sentence.

FoTB needs to go to prison.  If he fails probation he is supposed to go for 10 years.  I think he will end up there for 10 years.  He has never been sober for 2 years and he has never successfully completed an intensive treatment program.  He was kicked out of his 6 month one for failing to write his life story and he has to do that in the first two weeks in this new one.

I think it is a joke and I think the reason we have all of these people in and out of the court system is because they know it is a joke.  Why should they change when they know they will just get probation and another slap on the wrist?

HOWEVER, in happier news, Zack's last name was officially changed on the 8th so no matter what happens with FoTB, it no longer affects us.  He has no say in Zack's life any more and now he doesn't even share a last name with him.

BFF

Mom, Ava's not just my sister. She's also my best friend. And we live together, so we're going to be friends forever right?

I hope so buddy. I hope so.

Good Morning

"Good Morning beautiful, how was your night? Mine was wonderful with you by my side. When I,  open my eyes and see your sweet face it's a good morning beautiful day." - Steve Holy

Parenthood

That moment where you pick her up, squeeze her in tight and she snuggles into you. Her breathing slows, she completely relaxes and you know, without a doubt that everything you went through, the sickness, the swelling, the heartburn,  the insomnia, the labor, was all worth it for this moment. Happiness, joy, love.

The Pump

I have a love hate relationship with my pump.  On one hand it allows me to feed my daughter.  On the other hand it ties me to my office every three hours.  It feels like I am always in the middle of something when it is time to pump.

I got one of those hands free bra things but it feels like it is a bigger waste of valuable time to put that on then to just suck it up and type with one hand.

On the upside, Ava is growing and happy.  She is a peanut, only in the 8th percentile for weight but the doctor seems unconcerned.  Last night she slept from 8 - 5 which was awesome.  Only thing that would have made it better would have been if I wasn't up pumping at 2:45.  I suppose I will adjust to the longer stretches eventually.  I know I did with Zack.

Crazy Beautiful Life

Sorry I've been away. It is 3:00 am and this is what I'm doing with my time. It has been crazy. Amazing and awesome. But a bit crazy.

Email me if you want my Facebook info so you can keep up with me and know I'm still alive. otherwise, I will try to check in here more often.

Ava Elaine

Giving new meaning to the term labor day, Ava arrived on Monday, 09/03 at 1:45pm.

I will try to get here to write her birth story soon, but for now I just wanted you all to know she has arrived, she is healthy and we are all very much in love with her.

Adjusting



So apparently someone, who was not me, deemed my child old enough to start Kindergarten last week.  Whomever this person is, we need to have a chat because there is no way that my little boy, my baby who was just learning to walk yesterday, I swear, is old enough for school.  How did that happen?

 

Of course for him, the adjustment period has been quick and painless.  He LOVES it.  He is in a before and after school program that he couldn't be happier with if he tried.  We knew he had outgrown his daycare.  We knew he was ready for something different.  I'm not sure we knew quite HOW ready until he started school.

However, for me, the adjustment period has been a little harder.  Every day when I went to daycare I got an update from his teachers.  I knew what kind of day he had, what he did well, what he was struggling with, etc.  In Kindergarten, I get NOTHING.  And of course I could be "that parent" but I want so much not to be "that parent" so I haven't emailed his teacher.  I guess I am operating under the assumption that if there was a problem she would let me know and since I haven't heard from her he must be doing just fine. 

My other adjustment with school has been that he has to be there.  With daycare if I got up and felt like going in late to work, I just went in late and took him in late.  If I wanted to leave early and take him to the park or come home and watch a movie or do something else, that is what I did.  Now I can't just walk into his Kindergarten room early and pick him up.  I have to wait.

Of course, if the little miss would hurry up and make her appearance I would probably be too busy to worry about any of this.  But as it is... she is being stubborn.  Hold up inside her happy warm home bouncing away with no desire to join the rest of us on the outside.

Last week I was one cm dilated.  On measly little cm.  I almost cried.  (Especially since I was in labor and delivery at 4:00 am having contractions every three minutes when they told me.)  Needless to say, I was sent home to wait.  They stopped a few hours later and I have been waiting ever since.

I have been having a lot of back pain with her, which I never had with Zack, and that, combined with the lack of dilation despite contractions (LOTS of contractions) leads me to believe that on top of being stubborn she is also most likely sunny side up.  Lucky me huh?

On top of all of this I also discovered, just today, that Jim's new insurance will not cover Zack's pediatric clinic, the same one we have used for five years and planned to keep using.  So I am also in the process of adjusting to the idea of having to go somewhere else.  I have asked for, and gotten, a couple of good recommendations on Facebook but I still hate the idea of having to go somewhere else.

Guess I better get over it quickly as I need to pick someone post haste in case she decides to get over stubborn any time soon.

Still Here

Wow, a month?  Has it really been a month since I have been here?  Lately it seems like life is getting away from me.

Zack starts school in two weeks.  With the courts being what they are, things have been delayed so we won't be able to start him with a new name.  However, for him he won't know any different.  Hopefully within another couple of months we will be able to file and get it all changed.

The little girl in my belly is still growing.  I am 36 weeks 2 days today and I am more than ready to be done.  My sleeping is sporadic at best and my hips hurt and my back hurts and her but is shoved up under my ribs.

Her room is ready.  All of her clothes are ready.  I only have a couple more projects to finish at work and then... she can come any time.

I really have reached that point where I'm just over it.  I want her to be healthy but I also do not want to be pregnant any more.  (Nor do I want to be at work any more)

I feel like a slacker blogger but with all that is going on and with as little sleep as I am getting I really don't have a whole lot more to offer you.

Any pressing questions you have for me??

Leftover Pieces

The last month in our house has been a flurry of cleaning and updating and sorting and moving. 

Our bathroom was an after thought in a house that was built before indoor plumbing was ever an option so it desperately needs redone.  Unfortunately, that is not in our budget, but some upgrades were.  New bathroom paneling, paint, light, shower curtain, etc.  Lipstick on a pig... but it will get us through until we can afford the entire remodel.

The attic was a flurry of totes of baby clothes and toys that all had to be sorted and either thrown away, garaged saled, or kept for this newest little one.  Just yesterday we pulled the crib and the final 6 totes of baby items out of the attic.  All told I would guess I have now sorted through over 30 totes of baby items.

Finally there is my office.  My office was in our 3rd bedroom upstairs.  Since we only have three bedrooms in our house it had to be moved to make room for this little girl.  Which sounds MUCH easier than it actually was.  My office was 6 - 8 totes & a filing cabinet worth of paper, receipts, pictures, cards, letters, etc.  The last time any of it was sorted and organized was in 2007.  In 2008 when things started to fall apart so did my office.  Instead of sorting things and filing and throwing away it just got piled up.  And when that pile started to topple, a new pile was made.  Eventually last summer I got tired of looking at all of it and I stacked it all in totes.  Out of sight, out of mind.  Sort of...

Until now...

Last night I finished the last of the sorting.  My office has been moved downstairs, several garbage bags worth of items have been thrown out and several hundred (possibly over a thousand) documents have been scanned in and then shredded.

What is left, is the pieces.  Some remnants of a shattered life left over in a tote I will open when Zack is old enough to understand what it is.  A tote I will simply label FoTB.  This is the part I struggle with the most.  What to leave in that tote and what to throw away.

I have told myself for years that I would not sugar coat FoTB to Zack.  I am not going to make him out to be this saint with whom things just didn't work out.  That is not fair to me or to Zack.  However, I also think there are parts of that story that may be best saved for older years.  Things to be kept and things to just be shared along the way.

For now, it contains pictures.  Pictures of a man he may or may not remember clearly in 10 years.  It also contains some cards and letters that we wrote.  Those were hard for me to read and hard for me to keep, but again I can't sugar coat this for him.  Almost every card I got from him, birthday, anniversary, etc. is filled with I'm sorry about this, or I'm sorry about that, or things are going to get better.  Years and years of broken promises that are more embarrassing now than anything.  Things I look back on and wonder, was that really my life?  Why in the world did I continue to do that year after year?

Leftover pieces, sealed away in a tote....

Resigning as a Grown Up

This morning I had to take my favorite pet, my cat Lex, to the vet to be put down.  His health had been failing for a little while but we figured he was almost 13 and bound to be slowing down.  Then on Sunday we could tell something just wasn't right.  He just laid around our first floor, meandering from room to room but never going upstairs where he normally sleeps, or downstairs where he normally eats.

Sunday night I knew the time was near, yet I didn't want to make that decision.  I kept hoping he would make it for me.  Yesterday when I got up he was sitting in the kitchen and it looked like he was drinking some water.  We had brought some food to him on Sunday night and it appeared that maybe he had taken a couple bites.  I was holding out hope that perhaps he just had a cold or something and would get better.

When I got home from work last night one side of his face was twitching a little and his eyes had started to sink back into his face.  Yet still, I tried to hold out hope.  I went to the store and bought some canned cat food.  He licked it but would not take a bite.  I put some in his mouth and he tried to chew but it kept falling out and he couldn't eat it.  It was at that point that I knew it was over.

I'm not sure that I remember the last time I cried this much.  I cried and cried last night until I finally fell asleep and this morning, as soon as I saw him lying on the kitchen floor barely able to move or make a sound it started all over again.  I spent most of this morning in a state of completely choked up or crying.

Finally at 7:30 when the vet's office opened I called and made the appointment.  My wonderful friend Jess agreed to meet me there since Jim had to go to work and couldn't get off.  I knew what had to be done but I wasn't sure I could actually do it.  Make the decision to ask the vet to take him from breathing to not.

I cried the whole way there and when we got in I could barely utter a sound.  Luckily Jess was there because the people in that office wouldn't have been able to understand anything otherwise.   The vet looked at him and asked if he had been losing weight for awhile.  I told him probably a couple months but we just figured it was his age.  He said he was dehydrated and probably anemic and at this point he felt we were doing the right thing.  Somehow, knowing I was doing the right thing, hearing him say I was doing the right thing, still didn't make it any easier.

By 8:15 it was over and he was back in my van in a box.  We will bury him in our yard tonight and then take on the task of trying to explain it all to Zack.

My eyes are burning, and I'm sure pretty puffy.  I am at work but not really working.

I hate this part of being a grown up.  Can I resign?