Friday, July 24, 2015


These three astronauts were beyond our physical reach.  But not beyond the reach of human imagination, inventiveness, and a creed we all lived by: "Failure is not an option."

-Gene Kranz, Flight Director for Gemini, Mercury, and Apollo Missions; 
p. 13 Failure is Not an Option

Listening to Gene Kranz speak about his experiences with Apollo 13 was riveting, to say the least.  First of all, at age 82, he spoke for 50 minutes without a pause or a single "um."  (He had one minor loss of train of thought that he chuckled at.)  The detail in his speech was certainly impressive, and he is a wonderful story teller.  We can all learn so much about perseverance and ingenuity from that experience.  But one aspect of his speech struck me in particular:  trust.  Gene said that the success of that mission spoke volumes about trust.  (I wish I could quote him directly, but I had nothing to take notes with at that moment.)  He said that trust between the Apollo crew and everyone in mission control was key.

Trust.  The idea of trust as a topic for my next blog post had already been rolling around in my head when Gene brought up the idea in his speech.

John and I comment frequently about Alex's level of trust throughout this cancer journey.  As I reflect on the notion of trust, I realize it's an important aspect for all of us.

When Alex was first diagnosed with autism at age two, we set a goal.  We didn't know what the future held (see my post, Crystal Ball), but we knew that we wanted Alex to understand that he was loved, and to be able to trust us.  We weren't at all sure how to accomplish this, but this was our focus.  There wasn't a clear road map, so we trusted our instincts.

We watch Alex at chemo now, and shake our heads in amazement.  We would have never, ever believed that he could handle all of this.  We didn't believe it six months ago.  We surely wouldn't have believed it 20 years ago.

Anxiety is a huge component of autism.  There is a popular saying, "If you know one person with autism, you know one person with autism."  Everyone is impacted differently.  I think it's safe to say that anxiety factors in for most people on the spectrum.  When Alex was first diagnosed, that didn't seem to be a big factor for him.  By the age of four, we knew better.  By the age of six or seven, he was being medicated for anxiety.  If you asked me today what parts of Alex's autism are the most difficult for him, I would say anxiety and communication.  And, even though he is nonverbal, I would still list anxiety as a greater problem for him.

Functioning in the world is difficult for Alex.  It takes medication, practice, and trust.  We want Alex to be part of our family, part of the community, and part of the world in which he lives.  I think that's what most people want for their children.  It sounds pretty simple.  It's not.  Learning to get his hair cut at a salon (see Haircuts), eat in a restaurant, go to a movie, or go to the theatre, have taken years of practice.

Let's look at restaurants.  Alex has a limited range of foods that he eats.  That's also very common for people on the spectrum.  In 1992, that was beginning to be understood, but there wasn't a lot written to help us figure out how to make this easier.  Not unlike many families with young children, "eating out" usually meant eating a fast food meal in the car.  We could go to McDonald's and Burger King.  Chains work well because the menu and environment are the same no matter where you go.  Gradually, we started going in to those restaurants and trying the play land.  We hovered nearby, and more than once had to go in and rescue Alex when he got "stuck" (I mean that in a motor planning sense; if you have a child on the spectrum, you know what I mean).  When Jess got old enough, she either led or followed him around, and she rescued him when needed.  We had to watch his behaviors and listen to his vocalizations to try to predict when he was done before he became overstimulated and had a melt-down.  When we were eating, we had to keep a close eye on him because he would "steal" french fries from other tables.  (Think about it, as a parent, you let your child eat off your plate or share your food.  When you have autism and don't understand language and social conventions, you have no idea that all the food around you isn't fair game.  Some people were understanding; some were definitely not.)

Alex got good at fast food restaurants, but I'm always greedy.  Once Alex meets a goal, I want more.  The next level was Culver's and Fazoli's.  You order food at the counter, but you have to wait until they bring the food to you.  (Make no mistake, the wait time to dish up the spaghetti and walk it to the table was quite a stretch for Alex at first.)  The quality of food was a step up as well, which was a welcome change.

As Alex approached middle school years, I started thinking about what we could do for activities in the community as a family.  Eating in restaurants seemed like a reasonable goal.  So we started trying restaurants where servers actually came to your table and take your order.  There were hits and misses.  Sometimes he would refuse to get out of the car.  Other times, we got him inside, but the food we ordered looked or smelled too different and he would refuse to eat it.

We learned to look for restaurants with booths with extra high backs, and with minimal ambient noise.  (My brother has a theory that they pump in extra "crowd" noise at Texas Roadhouse to make it seem like a party atmosphere; I don't know if that's true, but I do know that it is not an "Alex" restaurant.)  We go early.  Lunch at 11:00 and dinner at 4:00 means we avoid the crowds which means less noise and less waiting.  We now have at least half a dozen restaurants that Alex likes.  

Even though he is "good at restaurants" now, that doesn't mean he can always handle it.  We have to be a able to "read" him on any given day, and try to see if he has enough emotional energy to enjoy himself.  It isn't something he's able to do every day.

So I guess this is where the trust comes in.  Over time, Alex has learned to trust us.  I think he knows, I hope he knows, that we're always there to help him.  We won't make him go into a restaurant that we think is overwhelming for him, or that doesn't have food he can eat.  We'll nudge him in order to help him expand his world, but we'll always try to balance the two.

It makes me chuckle now to think about all the work that went in to all of these things, when now the thing we're dealing with is cancer.   So many things I thought were a big deal, just aren't any more.  I guess that's true for everyone who deals with a life threatening illness, or the death of a loved one.  It helps you put things in perspective.

So now Alex has to trust us when he's in the biggest fight of his life.  This is a guy who used to have a "resting" heart rate of 110 when waiting for a doctor's appointment.  His face and neck would be flushed and he'd be having a full-blown panic attack.  Alex's blood pressure was elevated last week, but that's the first time in all these months.  He looks to us for strength and reassurance.  He must trust us, and the doctors and nurses, to be able to do what he's been doing these last months.  Anything to do with doctors, clinics, or hospitals are one of the biggest, if not the biggest, triggers of his anxiety and panic disorder, and he now goes to the doctor at least once a week and has had so many difficult procedures in the past seven months.  It boggles my mind.

John and I have had to learn a few things about trust as well.  We would much rather be the ones giving help and support and not be the ones asking for it.  Jessica's first sentence was, "I can do it myself," and she came by that honestly.  John and I are very independent and pride ourselves on being self sufficient.  Letting Alex move out took a lot of trust.  No one knows Alex like we do, and no one can care for him as well as we do.  At the same time, we have been trying to expand his world for his whole life.  We believe our job as parents is to raise our children to live independent lives.  (In hind sight, that was a stupid idea.  They believed us, and now we're alone.  What the heck?)  We believed that was still true for Alex.  We have to trust that Alex's caregivers are keeping him safe, nurturing him, and giving him the life he deserves.  We believe that Alex would find a way to let us know if this weren't true.  Every time we pick him up, he is excited to see us; but every time we bring him back home to his house, he is happy to go.  And Alex has grown in ways that he couldn't have if he were at home with us.  He spends his days with young men his own age.  He's done things and gone places we wouldn't have dared take him, and he's been successful.

Trusting the medical community was a big unknown at the start of this journey.  Our concern was not for the medical knowledge, but in understanding Alex's disability.  When Alex was small, we assumed that all medical people also understood autism.  Turns out, that wasn't and still isn't true.  We've learned to be explicit about what Alex can and cannot do.  We've tried to figure out how to be assertive about his needs without being a total pain in the behind.  We're generally pretty successful at convincing folks we won't get in their way, but doing their job will be much, much easier if they keep us around to support Alex.  We ask a lot of questions.  (A LOT of questions.)  But we also try to balance that with the fact that we are not medical professionals, and this is not our area of expertise.  They don't have time to bring us up to speed on 20 years of schooling and experience and still get his chemo started on time.  At some point, we have to trust the answers they give us and go with it.  That balance is hard to find.  (And, to be fair, Alex's oncologist may tell you we haven't actually found it.  So far, he smiles when he sees us, so I'm taking that as a sign we aren't a total pain in his tuckus.)

I used to worry that Alex wouldn't be able to trust us, or to really understand how much we love him.  I don't worry now.  I see it in his eyes at every appointment, and every visit.  I see it in his strength, and I see it when he leans on us when he's scared.  And Alex can lean on us, because we can lean on so many others.  No one wants something bad to happen to themselves or a loved one, but when it does, you really learn who you can trust.  I guess Alex isn't the only one who's learned that lesson.

Saturday, July 4, 2015

Dear Cancer - You Suck.

When everything seems to be going against you, remember that the airplane takes off into the wind, not with it.

-Henry Ford

Alex is snoring peacefully next to me on the couch, in his patented pillow-over-the-face sleeping position.  Don't be alarmed, he's been sleeping this way since he was given his first pillow.  I learned years ago to buy very lightweight pillows, and he always creates an air-hole for himself.  Usually, his head is tipped sideways and the pillow is actually resting on the side of his face.

It looks likes this:

This habit of his provided for some funny moments when he was in the hospital overnight in January.  The night nurse walked in to check on him and just about went in to cardiac arrest.  I had to explain that this was just the way Alex always sleeps.

Chemo #10 was Thursday.  It went fine, but each treatment gets more difficult for Alex both emotionally and physically.  Wednesday night he was already anxious, and Thursday morning he really did not want to get cleaned up or get going.  He can't tell us that this whole thing is BS and he doesn't like it, but believe me, he gets his point across.  We know his vocalizations and body language so well.  You can see it in his face.

We take for granted how we communicate and how we read Alex, but you're probably thinking "How do they know what he's thinking and feeling?"  First of all, as I've said before, I would give absolutely anything for one hour of Alex being able to verbalize what he's really thinking and feeling.  Since that has never happened, John and I have to be detectives.  All I can tell you is that we discuss what is about to happen the same way you would discuss what's going on with anyone.  "Alex, remember tomorrow is chemo day.  It's number ten.  After this, there's only two more to go."  He doesn't particularly react in any way, but you keep the conversation going.

There's no doubt he knows what's going on.  We go to the oncology office every Thursday, and have been doing this for five months.  One week is chemo, and the opposite week is a blood draw to check blood counts.  His demeanor is very different depending on which Thursday it is.  We certainly tell him what's about to happen, but he definitely is well aware.  On a blood draw Thursday, he gets out of the car and leads the way to the elevator and office.  We wait in the waiting room, and as soon as Hope comes out to call his name, he's up and out of the chair and going to the blood draw room.  Everything about his body language is "let's just get this done!"

Chemo Thursdays are very different.  He is completely cooperative, that's not the issue.  He gets out of the car, but reluctantly.  He walks very slowly through the parking lot, to the elevator, and into the clinic.  Every step is an effort.  This week, he seemed to walk even more slowly.  This week, there were no smiles in the waiting room.  He knows the routine, and there is comfort in that for him, but he also knows what to expect, and he's sick of it.  Literally and figuratively.

I think that the chemo the week of the wedding we had hit sort of a "sweet spot."  He'd had enough chemo to make him start feeling better from the cancer.  He looked good; healthier than in January.

Now, it's all catching up with him.  I feel terrible even saying that, because I know he could have been even so much sicker throughout this whole process.  The doctors and nurses are amazed at how well he's doing and how well he's feeling.  But it is taking its toll on him.  He's veins are protesting.  We do the peripheral IV for the chemo.  Most patients have a port implanted.  At first, we didn't have time.  Once they discovered the huge mass on his airway, chemo had to start the next day.  At this point, John and I were still reeling from the diagnosis, and none of us knew how Alex would tolerate or cooperate for treatment. At each of the first chemo treatments, we would discuss the port with the doctor.  We started out with a "wait and see" attitude.  As we watched him go through treatments, and handle everything so well, we had time to analyze the pros and cons of a port.  It would certainly save him from the IV stick each time, but then there's a foreign object, implanted under his skin.  This is not a small issue.  Throughout this time, Alex was healing from his January surgery.  His incision under his chin was healing beautifully, but it bothered him.  It didn't feel right.  So he picked at it.  He is a master of picking when no one is looking.  All of his caretakers and family members were vigilant about watching him and nagging him.  But it's impossible to watch him that closely 24 hours a day.  What would he do with a port?  What if he ripped it out?  We stayed with him in the hospital, and we stay with him during every procedure and treatment, so that he can't rip an IV out.  Over time, we realized that a port was not an option for Alex.

So, no port.  But his veins are not happy.  The chemo takes its toll on them as well.  The blood draw is usually one quick poke and done.  This week, Hope couldn't get the vein to give up any blood.  She tried twice, then decided to wait for the IV so she didn't have to put Alex through any more.  In came Ben (no pressure there - uncooperative veins, anxious patient, and mom and dad watching over your shoulder).  It now takes both John and I to help hold Alex's arms so he doesn't pull back.  He tries to pull his arm away at first.  He doesn't want to do this.  But always, at the critical moment, he freezes and holds perfectly still.  He watches intently, total concentration on his face as well.  We all hold our breath as we wait to see if the blood return shows that the IV has reached the correct spot.  Ben got it in two tries.

Once the IV is in, the rest goes like clockwork.  They gave the Adavan first this time, to help with the anxiety.  I think they upped the dose as well.

Four pre-meds and four chemo meds; four hours of IV.  We watch to make sure Alex doesn't move his arm.  We watch to see if he seems to have any discomfort or burning so they can adjust the rate of the IV.  One med in particular is so toxic that it would immediately ulcerate the skin if it leaked.  The final chemo med takes the longest.  That last bag takes two hours.  It seems to make Alex feel the worst.  You can watch the color drain from his face as that one is being pumped in him.

When he's all done, we remind him that he might feel light headed or dizzy.  We try to get him to take a hand or an arm as we walk out.  We know everyone by name now.  "Bye!  See you next week."  That's a weird feeling.

Alex won't take a hand or an arm though.  It's interesting, for someone who requires so much support, he is fiercely independent.  He pretty much sprints to the elevator and sprints to the car.  We try to keep up, afraid he'll keel over and do a face-plant in the parking lot, but he does just fine.

Usually, we take him to his house and put him to bed.  This weekend is a holiday weekend, so we brought him home.  We purposely didn't make any plans.  We'll just see how he's feeling and enjoy being together.

His attitude is still good, but we see more anxiety and more discomfort.  Friday was not his best day. He seemed more anxious and uncomfortable.  Then John and I remind ourselves that Alex is really sick, and treatment is really hard.  He's being doing so well, sometimes it's easy to forget how much he's going through.

Only two more treatments.  We asked the doctor when Alex will start feeling better, what we should expect.  He said it will take six months.  He'll have good days and bad, and gradually more good than bad, but it will take a good six months for the body to regenerate what it has lost through chemo.

So, it will be a year or more, by the time we're done before Alex feels like himself again.  We are painfully aware that many are not afforded that opportunity.  And that cancer will always be part of Alex's story.  We'll always be watching over our shoulders, always monitoring and testing.  But still, the prognosis is positive.  

This Fourth of July, we're grateful that Alex is here to celebrate with us.  By Labor Day, we'll be scheduling a PET scan to determine how well the chemo worked.  By Halloween, he should start having more energy.  I'm reminded that "slow and steady wins the race."  That's okay.  We're ready for the long haul.  Don't worry Alex, we've got your back.