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.

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. 

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?

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. 

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. 

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.

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 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.

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.

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.

developments

Mitchell's new chemo protocol has brought some new developments. Some good; some bad. Pluses

• No oral chemo meds
• Currently down to 2 chemo drugs rather than 3
• More non-sick time due to lack of oral meds
• Neuropathy seems to be slowly going away

Minuses

• More intense sick time after treatment days
• New and improved side effects from new infusion drug
• Hair loss has begun

and the fun keeps coming

Mitchell's scan was read today, and the results were not good. There are 2 new lesions in his liver and the couple or three in his lung are larger (of course, we're talking mm and cm, but still). Soooo..... They're switching his chemotherapy meds but using the same protocol. The doctor did say today that the treatment goals are for Mitchell to live with cancer as a chronic disease. He said that the cancer was not curable and could not give us anything concrete about what treatment will look like long term. I walked away from the meeting with a few impressions. The most shocking to me being that Mitchell's experience with chemotherapy is long term and on-going. I don't know where I was when this was discussed previously, but I did not realize that this had become a permanent part of our reality. We are now looking at 3 to 4 month chunks of time where he will get treatment and then have a scan to see what's going on and then proceeding from there. He talked about there being lots of different types of treatments and procedures that will most likely be part of our future. I feel shell-shocked.

not your mother's rant

Outsiders (and by outsider I mean any individual who does not live with the day to day reality of this disease) who tell me everything is going to be fine make me feel crazy.

This has been established. It's kind of like when you're bitching about your mom or some other family member who has gotten on your last nerve and whomever you are bitching to says, "Yeah, you're right. Your (fill in the blank with mom, brother, dad, spouse) really IS an asshole!" And something inside you screeches to a halt a says, "Hold on. It's okay for ME to say that, but it is NOT okay for YOU to say that. Back off, JERK FACE!" And now you're battling your friend who was just trying to commiserate with you. Yeah. That's exactly what it's like.

I say everything is fine to make myself feel better. Sometimes "Every thing's fine" is what allows me to get through whatever it is I'm trying to get through... But you telling me that every thing's fine somehow tells me you're minimizing what's happening in our big box of a two-story these last 9 months. And maybe you're not. Maybe you realize that the situation is precarious, but you can't say that so you use phrases that gloss over the difficulty like fluffy frosting on cake that has cracked and broken. Maybe you know that every time Mitchell has treatment, the aftermath gets worse. Worse to the point where I'm harassing him hourly to call the cancer center because he's been lying in bed for days and can't eat or really drink and he looks small and shrunken. And he's hating me because I keep asking (and I even hate myself) but I can't stop nagging him.

Then I have to step back and realize, people are going to deal with this thing the way they have to deal with it. And I'm going to either let that go or hold on to it. And remember that no one knows until it happens in their house what it means or how it hurts or how angry you can get at someone who really isn't at fault.