the part that comes after

Numb and yet strangely raw are the predominant feelings.  Trying to make sense of this part.  Still so hard to believe that he is no longer with us.  This all seems impossible.

memorial

On Saturday, November 27 at 2 pm we will celebrate Mitchell's life at St. John's Lutheran Church, 7205 N 51 AVE, Glendale, AZ 85302. We look forward to seeing the family and friends that will join us. For those joining us in spirit and in prayer, the girls and I thank you.




Cards and Flowers can be sent to Best Funeral Services, 9380 W Peoria AVE, Peoria, AZ 85345. ♥

Mitchell passed away last night.  He lost his battle with cancer, but he was able to do it on his terms.  He fought until the last moment he was with us.  We will love him always.

trial

Mitchell made it through his first clinical trial treatment, but it wasn't easy.  He spent almost 11 hours at the Cancer Center on Tuesday.  After a day full of constant monitoring of his heart, blood sticks, urine monitoring and general data collection, Mitchell was wiped out.  For the first time in his treatment, he had to leave the Center in a wheelchair.

Since the treatment he seems to be more and more tired.  He has been good about resting.  The swelling in his legs and feet continue.  He has been sleeping in bits and pieces throughout the day and early evening.  During the night, sleeps seems to evade him.

I worry constantly about his pain; even though he says he is fine.  

We are spending a lot of careful time together.  It's important to say what needs to be said.  And listen.  And just be together.

clinical-day one

Mitchell is on his way to his first infusion with the new clinical as I type this.  He will be there ALL day because of the constant heart monitoring, blood samples and pee collecting the study requires. 

After all this, I find myself still crossing my fingers.

confirmation

Dr. Brown confirmed that Mitchell's liver is failing.  It doesn't take a rocket scientist to see it, but your mind does interesting things to protect us from really terrible truths.  We would have hospice here, but he has been granted a waiver and been allowed to continue ahead with the Aztec Clinical Trial.  And as long as he's still actively pursuing treatment, hospice cannot come.  I'm glad that Mitchell is a fighter.  The girls and I need him to continue to fight right now.  But I know there will be a time when he won't be able to push back any longer.  I'm just not ready for it today.

My dad is coming to stay with us.  I'm so thankful that he is able and willing to do this. If I'm honest though...I don't want anyone else here.  That's not realistic right now.  We need the help.  

I am thankful to have Mitchell, who is the strongest, most selfless person I have ever known.  Through all of this, he continues to put myself and the girls first.  He doesn't wallow in the questions that I know I would be consumed with at a time like this.  He faces each day with bravery and resolve and loves us and supports us through it all. 

update

Mitchell's been going through a lot of prep for the upcoming clinical he's been accepted to.  Last week it was EKGs and blood work.  This week it's scans of every kind and more blood work. 

Physically you can see him getting weaker.  He's had more pain, more shortness of breath, more stomach issues.  Less sleep, less activity.

Emotionally he is still doing well.  He's strong mentally.  So strong he can almost make me believe. 

distance

I'm feeling much less raw after putting a little distance between myself and that terrible appointment with Dr. Brown last week.  The reality of events to come has not changed, but I am feeling better able to manage my emotions.  Admittedly, I have moments when it  overwhelms me.  Driving alone is probably the worst time for this.  Memories of that appointment are like a magnet for my mind; it keeps reverting back to those words.  But it also reminds me that none of us are promised any length of time on this planet, and we need to embrace each moment as it happens. 

We are good right now.  And that is good enough right now.

at this moment

Now realizing there's a big difference between thinking you are prepared to handle something and actually confronting the reality of what that something means. 

At this moment, I am praying for strength for all of us.  And time.  Time for him and me and for Taylor, Dylan and Hayden. 

day 1: post accident

Yesterday on the way home from the Reid Park Zoo, we had a little car-tastrophe.  Someone in a big old F150 smashed into the back of my teeny tiny Versa at an intersection in Tucson.  The driver admitted fault and we easily exchanged information.  We filed a report with a TPD officer, and we were on our way.  Shaky but back in action. 

That's not really the worst of it.  The bad part has been dealing with the insurance company.  No big surprise.  After 3 phone calls, I now have a claim number but not much else.  Apparently the driver has to admit fault to State Farm for all of this to be real.  Never mind that she admitted fault to me, the people in her car, the Tucson Police Officer...EVERYONE who would listen.  It's not real until she tells the State Farm Rep sitting in a random call center in Nebraska that "Yes, the accident was my fault." 

Granted my need for urgency is increased because after 4 years of staying at home, all that ends on Monday, meaning my time is not my own and I don't have infinite amounts of semi-free time to deal with bureaucratic craziness.  Our maybe I'm just bitter that very shortly after we have paid off this car, it now has a big ol' dent in it and the  hatchback doesn't open and close properly.  Whatever it is I'm hostile about the whole thing and just want a satisfactory conclusion ... SOON.

new directions

I recently accepted an ELL teaching position at the local elementary.  This may seem like a 180 to some as the last time I was in charge of a classroom, I was fried to say the least.  But it's been awhile since I taught last, four years to be exact, and this particular situation is quite different from where I was. 

Truth is, I'm excited to participate in the adult world again.  It will be nice to meet adults who don't know my kids and aren't trying to plan a play date or sleepover or trip to the movies. 

And like I said, this situation is different.  I'll  be working mornings with a student load of under 20.  There's a good mix of instruction and paper work (you're thinking, "Why does she like paperwork?"  I don't know.  I find it soothing.)  There's tremendous opportunity for me to learn and grow, which is exciting.  And necessary to prevent my brain from becoming middle-aged mush.

Will I miss being at home with the Hay?  Of course.  Will it take a bit to adjust to the demands of the new schedule?    Definitely.  But I also realize that this is a necessary step in a new direction that enables me to have more control over my family's destiny.  I have decided to rise to the occasion.

epic fail

Mitchell's experimental treatment appears to have been just that.  He was officially taken off the gleevec and celebrex protocol as it was not having any impact on the cancer's growth.  He is being discharged from UMC this morning with 2 different types of morphine in pill form to help him with pain management.  There is talk of enrolling him in a clincial trial sometime this week, but first he needs to meet with Dr. Brown to go over whatever it is they need to review. 

I'm hoping the clincial trial administers the chemo through infusion.  Mitchell hasn't had much success with pills so far.  I'm also hoping that this episode helps to remind my spouse to be more responsive to the signals he gets from his body.  For people in his situation, things don't usually just "go away". 

new right now

Spent the day with Mitchell in the ER.  After a miserable night at home, I convinced him to go in.  Long story short...The ct scan they did today showed "significant" growth in numbers and size of lesions in his liver and a handful new metastases in both lungs as well as growth in those already present.  He was finally admitted late this evening.  The plan is to reintroduce liquids and food and then his meds and see whether or not he can tolerate them.  Not sure how long his stay will be.

Although I am not surprised at this news, it leaves me feeling hostility toward health care in general.  Perhaps if the insurance company would pay for scans at regular intervals for Mitchell, the oncologist would know in a more timely manner that a protocol wasn't working.  I also realize that  chances are slim to none that we will beat this cancer...Knowing that, shouldn't Mitchell be given the opportunity to extend his life while battling this disease as much as is medically reasonable?  And have a reasonable quality of life at that? 

The longer we are in this, the more medicine seems to be random shots in the dark and less science and logic based on evidence.  No one seems to really know anything with any kind of authority. 

right now

Mitchell has been laying in his recliner for the last seven and a half hours.  He's been having trouble with his stomach.  Apparently the last combination of meds has been doing a real number on his digestion. 

He met with Dr. Brown last Tuesday.  I feel like there's nothing really new to share.  Although I thought this last appointment would let us know when Mitchell's next scheduled PET scan would happen, but it seems that's not going to play out the way I thought it would.  Something about tumor markers and whether or not they're elevated.  I have no idea what the state of said markers are because the doctor failed to call and Mitchell has yet to track him down. 

My hopes right now are that Mitchell gets back on infusion chemotherapy.  Sounds crazy, but at least he gets the medicine when they're mainlining it into his system.  This whole pill thing isn't really happening. 

Another item of note is that Mitchell's pain level seems to have increased.  Stomach.  Shoulder.  Back.  Hard to say what is causing it.  Glass half empty reads its from the disease and not the meds.  Who knows really?

key lime deliciousness

So I was asked to try out a product  recently...That's not usually my thing, but this really worked out.  

The kind folks from Plentiful Pantry sent me a big ol' box of goodies.  There was everything from soups to pasta and sauce to desserts.    What's the hook?  These items are easy to make mixes that need only a few extra ingredients.  NICE!

It being Fall Break, I had made plans to have the girls' fourth grade teacher and her newish baby over for lunch.  I had already planned on sandwiches with lots of fixings, and Tonya was bringing salad.  I just needed something sweet.  Dylan picked out the Key Lime Cheesecake Bars several days before strictly based on the box.  This particular mix needed 16 oz of softened cream cheese, 5 tbsp on butter and a cup of hot water. EASY! 

The step by step directions were a cinch to follow.  The only prep was to make sure I'd left out the cream cheese and melted the butter in the microwave. 

Mixing was simple and quick.  In no time, I'd gotten everything together and was ready to throw my treat into the fridge to chill for the prescribed hour.

The finished product did not disappoint. The dessert gelled perfectly, looked great and tasted even better.  Everybody loved it.  The chocolate cookie crust worked well with the tart creaminess of the key lime cheesecake filling. 

The biggest problem with this dessert has been that since I made it, the girls have eaten little else.  Seriously.  It's day 2 and the thing's just about gone.  I caught Dylan eating a huge piece for breakfast this morning. 

I know I'll be ordering this item again, and luckily I have a coupon code.  Enter BEEBEE25 at checkout and you'll get 25% off anything you order from Plentiful Pantry.

army of love

October 1 marks the beginning of Breast Cancer Awareness Month.  Being in the throes of Colorectal Cancer it seems that EVERY month is a Cancer Month for us, but I venture to guess that life isn't like that for everyone...

More than 200,000 women are diagnosed each year in the US.

More than 40,000 of those women who are diagnosed this year will not survive.


Go to the Army of Love website and read, learn, and maybe even sign up for information about Breast Cancer.

38

On this day, thirty-eight years ago, my parents were married.  They didn't have a big fancy wedding, but I hear it was one hell of an after party. 

Thanks to them for being a great example of how to make a marriage work. 

I love you guys. 

some days

Some days are better than others.  Some days he seems pretty okay.  I can almost forget on those days.  I'm able to see past it into our future. 

Some days are bad.  It's obvious that he's sick.  He's slow moving and looks like he hurts.  He's quiet and far away.  And nothing seems to help.

Some days I wish I knew the future.  The unknown is always what's most scary.  I wish I knew what would work.  Or how how to help. Or what to say.  But I don't know any of those things. 

regrouping

The only thing more difficult than admitting that you've allowed yourself to go "off the rails" so to speak is getting things back on track.  The going is slow and the road filled with potholes and obstacles.  I just have to remind myself that I am capable and reasonably intelligent and I will get it together.  Eventually.

Hopefully sooner.  Rather than later.

anticipation

• queasy, fluttery feeling in the pit of my stomach
• fixation on elements I can't control
• tension in my shoulders
• constant  wondering, hoping, wishing
• persistent feeling of nervousness
• vomitous