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.