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.