baby steps

Difficult week.   Hard to get back to "normal".  More difficult to swallow what is now normal.  Things around me buzz like white noise.  Thankful for the weekend and our beautiful girls.

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

tummy troubles

Mitchell is still having issues with his stomach.  He's lucky if he gets one dose of the chemo down each day.  Symptoms continue to range from a "sour stomach" to cramps to nausea to sudden exhaustion.  The visit with the nutritionist seemed to be helpful, but it doesn't change that he is constantly struggling.  It struck me the other day that Mitchell's been going through treatment as long as Hayden's been alive. 

11

Eleven doesn't like vegetables.  Or any meat other than "steak".  It doesn't want anything whole grain; white and processed is considered best.  Eleven will eat mashed potatoes but don't try to scallop or au gratin.  Things that 10 loved 11 despises. 

It would love a diet of items filled with sugar and red dye #5, anything processed and pre-packaged ... oh and gum (no mint flavored). 

adverse reactions

Mitchell is currently paying for his weekend of football and fun.  He's been wiped since his return as is his usual after a trip up "North".  Last night he developed another strange pain in his shoulder.  This led to me rifling through prescription notes and rustling through pill bottles near the middle of the night in search of a painkiller that wouldn't react adversely to the gleevec. 

Today brought more exhaustion and nausea and even some vomiting.  Thankfully the experience has been bad/inconvenient enough to make Mitchell call the Cancer Center for support.  He has an appointment with a nutritionist in the morning.  Hopefully he'll get some ideas about how to handle his stomach issues because if he can't take the pills, it's not going to impact the cancer.

next

Newest experimental treatment involves Gleevec and Celebrex taken orally.  Mitchell has an appointment with Dr. Brown tomorrow to get things started.

Let's hope this has some affect.

more love-hate

Mitchell's MRI was read this morning, and everything is clear in his brain.  WHEW!  The headaches are definitely being caused by the abraxane. 

On a negative tip, the oncologist and a specialist have had an opportunity to compare Mitchell's last CT with the most recent PET scan.  The experimental treatment is not working.  His tumor markers have elevated since beginning the new treatment....So it's back to the drawing board so to speak.  The abraxane/avastin has been discontinued as of this morning.  Mitchell was supposed to have treatment on Friday, but it is being put on hold until Dr. Brown can consult with a colleague to decide what the next steps are. 

friday

Mitchell has an MRI scheduled for Friday.  That sick, fluttery feeling in my stomach has already begun.  He's been really struggling this week.  Headaches.  Exhaustion.  Breathlessness.  The headaches have been severe enough to cause him to actually take the meds Dr. Brown prescribed to fight the pain.  Unfortunately, they don't seem to do much.  I'm having difficulty deciding whether these symptoms are a result of treatment or cancer.  This morning I found myself running through a list of possible headache triggers aloud.  Decided I need to starting logging Mitchell's symptoms between treatments.  Maybe there's a pattern there that'll help me know what to expect and when.

Taylor's first dance is happening this Friday too.  I'm excited for her, but a little sad too.  She quietly confessed to me that she was the "only one" that hadn't been asked.  She shrugged it off but it's evident she's bothered.  Everyone likes to be asked, right?  I gave her the same line my mom gave me a million years ago when I was bemoaning a similar plight, "Boys are just intimidated by your beauty and confidence." 

I didn't believe her when she used it on me either.

scan

Mitchell's PET scan was read yesterday and the good news is....We're in the same place we were in back in May.  Chances are the cancer is still growing but SLOWLY.  So that is a good thing.  This particular appointment was remarkable to me because Mitchell was more straight-forward about the symptoms and pains he's been having.  He has an MRI on his brain scheduled for next Friday in order to rule out metastases there.  More than likely,the headaches that he's been having are probably a result of the abraxane. 

Dr. Brown still feels like Mitchell is holding up very well considering we are on month 19 of almost nonstop chemotherapy.  Unfortunately the doctor believes that he will only be able to tolerate 3 or 4 more administrations of these drugs due to the diminished reflexes and the increased neuropathy. 

It's still funny to me to hear people say that Mitchell looks good, even though it doesn't bug me like it did before.  I think it's interesting that people are comforted by the idea that a person with this level of advanced disease looks good.  To me, it's the opposite.  It scares the shit out of me that something that destructive can hide out in your body like that with minimal outward symptoms.

love-hate

Friday, Mitchell is scheduled to have his 2nd PET scan.  Scans are a double-edged sword.  I want the information, but I'm afraid of it.  I'm not sure if it's better to be an optimist or pessimist.  With pessimism, you can be pleasantly surprised.  Optimism can leave you feeling like you've been mugged. 

Maybe I can try on optimistic pessimism?

beginnings

The start of the 2010-2011 school year! 

Can you believe this is Dylan's last year of elementary?

Taylor is really growing up.

right now

We are at the midpoint of summer break, and Mitchell's got his second experimental treatment well under his belt.  The abraxane comes with more physical pain than the previous treatments.  Mitchell's legs and feet have been taking a lot of abuse...He's been taking each day as it comes and dealing with it like a trooper.  Headaches have also been a problem.

The older girls are just about ready for break to be over.  Mommy was ready about 2 weeks ago.

new developments

Pleurisy is Mitchell's newest cancer-related diagnosis...He'd been experiencing chest pain and ended up in the ER last Friday as a result.  He left with yet another prescription  and a vague understanding of exactly what the diagnosis meant. 

I myself am not sure exactly how this new ailment will impact him in the long run.  As soon as I saw his discharge paperwork, I was googling "pleurisy".  I did find out that pleura is an actual thing.  Also I discovered that it can be related to a variety of primary diagnoses, none of which being colorectal cancer.  Mitchell's visit to the ACC did reveal that the condition is sometimes related to pulmonary embolisms.

new treatment

Mitchell FINALLY went back to see the oncologist this morning.  His new chemotherapy begins this Friday.  They decided on a combination of abraxane and avastin every three weeks.  Avastin he has been on before, so we know the evils of that drug but we'll have to wait and see as far as the abraxane is concerned.  Typically this combination of drugs is used for advanced breast cancer patients.  For this reason, our insurance company will most likely refuse to pay for these infusions.  We are still hoping to receive a compassionate use dosage from the company that makes it.  Let's all keep our fingers crossed...

There was also talk of an on-going clinical trail that is available in the Tucson area for colorectal cancer.  It's good to have a back up back up plan. 

Mitchell is having mixed feelings about starting treatment again.  Okay, that's kind of a lie...He hates the idea of starting again.  It's hard for me because I can imagine how he must feel, but I am glad he's going to be getting treatment again.  When he's off treatment, all I can think about is that the cancer is killing him.

still

Still no word about when treatment will start again. 

It seems I'm the only person around who feels like throwing a temper tantrum about the whole thing.

waiting game

 Mitchell still has not restarted treatment.  The more time that passes, the more anxious I feel.  If the cancer was growing while he was on treatment, I can only imagine what it's doing in there while it's free and clear.  The oncologist has lost all sense of urgency. 

My glass half empty perspective makes me feel like our chances of having a positive outcome are getting more and more narrow.  It scares me.

the latest

The meeting with Mitchell's oncologist went about as I expected it would.  The scan showed that there are no positive changes in Mitchell's tumors (please notice Dr. Brown now refers to them as "tumors" and not "lesions"), especially in the liver.  We were presented with two choices--clincal trials or experimental treatment.

So what does that mean?    His current treatment has been stopped, and he is scheduled to have a liver biopsi late next week.  The sample will go through a series of tests to come up with a cancer profile, which will, in theory, allow the doctors to better treat Mitchell's cancer.  This whole process is considered experimental, but we have been assured that this is the cutting edge of cancer treatment technology.

On the good side, Mitchell will be given a much needed treatment break while the profile is generated.  Of course the pessimist in me worries that while not on treatment, his cancer will run rampant but I've managed to keep those thoughts at bay for the most part.

Meanwhile, Mitchell has developed some trouble with blood clots.  He is currently on twice-daily meds for a pulmonary embellism that developed on Friday.  Doctors believe that the clots are a result of one of the chemo meds.  He's taking it easy, and we are being watchful for any warning signs.

the un-break

Spring Break is right around the corner, and may I say that I am NOT looking forward to 20 consecutive non-school days plunked right in the middle of March.  Everytime I get on facebook I am reminded of how beloved this spring holiday used to be to me.  All my teacher-friends can think of little else other than what fun they will be having without their students.  I used to be them.  I would count down the days beginning that first day back from Christmas break.

Alas that is I no longer.  I'm now on the team rooting for shorter and less frequent school breaks.  In fact, year round boarding school is looking fabulous right about now.

i'm not your superwoman

One of the many, many things that I find more and more irritating these days is the idea of Mom as Superwoman.  Yeah...I realize this isn't a new thing.  TV's been trying to get us to swallow this pill for years, but it seems like a number of us maternal-types are buying. 

The majority of the women I seem to encounter are clearly all from the same school for over-achievers.  They are everything to everyone at all times and smiley and pleasant while they do it. 

It makes me want to puke. 

don't blink

Last month brought two important birthdays in the Harris household. My firstborn turned eleven, and Hayden is now a one year old. Hard to believe that time passes so quickly. It seems like just yesterday I was calling Stephanie to ask what she thought about the huge, warm puddle that had appeared beneath me on my bed as we chatted away. It passes in what seems the blink of an eye. One minute I'm wishing for everyone in the house to be able to wipe their own poopy asses, and the next we're trying for a third baby and beginning again. And while I'm looking forward to the time when once again everyone can wipe themselves, I am enjoying each moment with my girls. Even though Taylor is moody and Dylan never stops telling random, tv-inspired stories and Hayden is still nursing and bites sometimes, I love every second.

arms akimbo

More unsettling news in the Land of the Harrises and Colorectal Cancer. Mitchell's chemo has been altered due to unsatisfactory progress (or lack thereof). It seems those pesky cancer cells are fighting with renewed vigor in the liver and hanging pretty tough in the lung. Doc Brown has added a biologic to the treatment mix. Unfortunately this infusion has to be administered weekly. Fortunately, the chemotherapy infusion schedule remains the same (every 21 days). Amazingly Mitchell continues to fare pretty well despite the chemotherapy. He has gained weight (mostly, due to the steroid-decadron- he takes to control some of the more adverse side affects of the chemo) and is able to go about his business pretty consistently. It is still difficult for me to believe we are in the middle of all this. Even more difficult to believe we are going on Year 2. I often wonder how long Mitchell can keep this up.

like it's 1999