Christmas

I love Christmas.

I love decorating, baking, gift giving, and a roaring fire in the fireplace.

I love Christmas music - listening to it, singing it, performing it for others.

But mostly, I love spending it with family and friends.  This year, our Christmas will look very different.  We will focus on what's most important as we spend our Christmas in the hospital with Alex during his stem cell transplant.

Christmas Eve will be "day -4" and Christmas Day will be "day -3."

As I said, I love, love, love Christmas.  That doesn't mean that I'm immune to the complicated emotions, stress, and tricky family dynamics that also accompany the holiday.

Christmas for Alex has always had its own issues.  Creating Christmas for someone on the autism spectrum and also meeting the needs of his sibling and the rest of the extended family required quite a tap dance.

When my children were very small, Christmas Eve was spent with my in-laws, and Christmas Day with my family.  Jessica loved the chaos, noise, food, and cousins.  Alex was easily over-stimulated.  He could do everything, but in small doses.  We learned early on that we would have to do what was best for him, regardless of whether or not others understood.  And, for the most part, everyone did.  We probably put more pressure on ourselves than anyone else did.  The "rule" we established early on is that whoever's side of the family we were celebrating with, that parent would stay at the party with Jess, and the other parent would bring Alex home.

We rarely went anywhere in one vehicle, and we always had an "escape plan."

It may have been easier to opt out completely, but our goal was to stretch Alex's world without totally overwhelming him.  Since he was, and still is, basically nonverbal, we'll never know from him whether or not we got it right.  We went with our gut.  It didn't feel right to exclude him, and it didn't feel right to ignore the signs that he gave when it was too much.

We have, at least I hope we have, become adept at "reading Alex."

Opening Christmas gifts was another issue.  He just wasn't interested.  We had to figure out how to make the gift opening something he could enjoy and participate in.  I managed to find Sesame Street Christmas wrapping paper (Alex was obsessed - as literally OCD obsessed, it turns out, with Bert and Ernie).  That helped.  We let him open presents in his own time.  Some years, that meant his presents were under the tree for days before he had opened them all.  (Jess told me a few years ago that was torture for her.)

Over time, Alex learned to partake in all things Christmas.

He is my Christmas baking sous chef (or maybe
now I am his?).

He loves opening presents.  He loves music and Christmas movies - or at least he loves his mom and tolerates some of the hoopla for me.

Because of Alex, we also learned to carve out Christmas traditions for us.  Ones that were special and not overwhelming.  Christmas Eve drives in pajamas to look at the lights, not getting out of pajamas at all on Christmas Day - just presents and toys and naps and food and movies.

Music has been a part of our Christmas for many, many years.  When the kids were young, we took them all with us when we caroled at area senior facilities.  One very fond memory is visiting a place called Roundhouse Manor in our home town many years ago.  Alex was about four.  We were all in the gathering space, singing our hearts out surrounded be appreciative residents.  In between a couple of songs, Alex wondered over the the jigsaw puzzle table and with one very fast sweeping motion, brushed all the pieces to the floor.  The collective gasp from the residents just about removed all the air from the room.  Now that Alex is a cancer patient, we see jigsaw puzzles in every waiting room.  Every time I see one, I smile at the memory; although at the time I was mortified.

We managed to sing for Midnight Mass for many years, always coming up with someone to come over and stay with our kids, or Alex when Jess got old enough to want to go along, so we could sing.  Establishing a good sleep routine for Alex was years in the making, and could be easily ruined.  Taking him to a place that would be overwhelming and stressful in the middle of the night when he thought he should be sleeping was just not an option.  Yet, somehow, we found a way to make the whole thing work.

I will confess that I have shed tears in the past, wishing that Christmas for Alex could be less complicated.  As I sit here now, I realize that it helped us to learn what was important, and to make Christmas what it needed to be for both Alex and Jessica.

This year, there are no decorations or cards.  We're packing for the hospital.  When the transplant got pushed back a week, I had a fleeting thought that I would have time to get the tree up.  But then I thought about taking it down before we go, or having it waiting for us when we return at the end of January or in February.  So I let that idea go.

But there will be Christmas.  Traditions have changed over the years as our extended families have grown and changed.  We've always managed to adapt.  My dad passed away on December 23, 1994; of cancer - no irony there.  Our family celebrated with him a week before his passing.  This is our first Christmas without John's mom; although, truth be told, Alzheimer's stole the last couple of Christmases even though she was still alive.  She loved Christmas and was the heart of the Forster family Christmas.

It will be Christmas in the hospital; and, hopefully, like Cindy Lou Who when she woke up Christmas morning without any presents, it will be Christmas because we're together.

John, Alex, and I.

Jessica and Rusty will come for Christmas Eve.  Their first married Christmas.  The bright spot of the year for our family - Jessica and Rusty's wedding, and their unexpected move back to Wisconsin.

And Allison's family will be there.

When we check in to the hospital, chemo starts that first day.  We begin our countdown to transplant day, that's why Christmas Eve is called "day -4" and Christmas Day is "day -3."  Day 0 is the day his stem cells are infused back into his body.  That will be Alex's new "birthday."

Last Christmas is when I realized that something didn't look right with Alex's neck.  I had nothing to go on but a feeling that something wasn't right.  I look at last year's pictures now, and it seems so obvious.  Little did I know that it was the beginning of a very tumultuous year.

In August, I was sure that Alex had won - that he had conquered his cancer.  Sadly, that was not the case.  Cancer is not an easy foe to beat, and Alex's cancer is certainly not backing down without one heckuva fight.

This Christmas we focus on love and family, and on Alex's treatment and the hope that it will give him many more Christmases in the future.  That's all I really want for Christmas.

Choose to be Strong, Even When You're Not

Resiliency.  Growth Mindset. Grit.  Attribution Theory.

There are a lot of names or buzz words that represent similar ideas.  At school this year, we're all talking a lot about the idea of "Growth Mindset."  Fifteen years ago, we were talking about "Attribution Theory."

The idea is is that individuals who are successful believe that they can learn and change and grow.  They believe that with practice they can be successful.

I think this idea applies to our current situation.  Alex's cancer is certainly testing us in ways we've never been tested before.  We do our best to remain positive and face each challenge head on.  That doesn't mean it's easy.  Prior to this, our medical knowledge was minimal.  It's also safe to say that neither John nor I went into medical fields for good reason.  This is not where our interests or aptitude lie.  But here we are.  We've learned a lot in the past ten months, and our accelerated cancer course is not finished yet.

We appreciate the support of friends and family.  Honestly, though, we're a bit puzzled by the continuous compliments.  It's not false modesty.  We don't see any other option.  When Alex's new PICC was installed last week, the medical team in the cath lab was incredibly complementary about what great parents we are.  That was nice (I half expected them to give us a sticker or a lollipop or something), but puzzling.  Afterward, I whispered to John, "the bar must not be very high."

The thing is, when a doctor looks at you and says, "you need to do X,Y,Z or your child will die," you suck it up and do X, Y, Z.

Alex needs us to be strong.  We have to be his voice and advocate for him.  We have to ask the questions he cannot ask.  We have to hold his hand when he's scared.  We have to do whatever he needs, and we have to make our best guess as to what that is since he can't tell us.

That doesn't mean it's easy.  That doesn't mean we're not scared beyond words.

Right now, I have the luxury of not working and focusing on Alex's treatment.  John is still balancing work as well as Alex's cancer.  If he could, he'd be there for Alex full time as well.  But the bills still need to be paid and we need at least one income.  If I were the higher wage earner of the two of us, he'd be home full time instead of me.

We don't like watching Alex have a PICC line installed, or getting put under for a PET scan, or holding his hands so he doesn't pull the drain out of his neck after surgery.  We don't like sleeping on a hard chair in a hospital room with a stranger watching over us.  But Alex needs us.

We don't always get it right.  Most mornings are hard to get out of bed.  I fall asleep by 8:00 most nights that we're home.  I feel tired in my bones a lot of the time.

Last week when Alex was in the hospital I could hold it all together.

This week, there's a short break.  Alex is at his group home.  He's doing okay.  We're getting ready for tests next week.  Yesterday afternoon, I had a meltdown.  I certainly didn't plan it.  I felt helpless to stop it.  Jessica held me and told me it was okay to cry.  I couldn't let myself do it.  I was afraid if I really let myself cry, I wouldn't stop.  John was worried about me, so he came home early from work.  I ended up just going to bed in the middle of the afternoon.  Today was better, but I didn't accomplish anything.

But that's the end of my window to fall apart.  Tomorrow Alex has a blood draw.  I have things to do to get ready to go to Milwaukee.  In a few days we go to the hospital for tests.  A few days after that we start the process for harvesting his bone marrow.  I know that we have to be even stronger than we've been so far.

We appreciate the compliments, but we really don't see any other way.  Turns out, my magic wand to cure his cancer is on the fritz.  This is all we've got.  Put one foot in front of the other, day by day, minute by minute.  This just sucks.  But I can't focus on that.  Instead, I choose to focus on the positive.  I see Alex's smile.  I know that John is my rock, and I know that I have to be that for him.  Jess is here.  Rusty is here.

Time to take a deep breath.  We got this.  That doesn't mean it's easy, but it is what we have to do.

Midnight Musings from the Cancer Ward

These are the things I think about when I'm trying to fall asleep in Alex's hospital room:

1.  Alex (and our family) has built so much capacity in the past few months.

Alex now knows how to get to the bathroom while hooked up to an IV.  He can eat meals sitting in a hospital bed.  He tolerates being poked and prodded throughout the day (and sometimes the night).  I'm learning to sleep in a room where a stranger is watching over him all night (to make sure he doesn't rip out any lines).

2. It doesn't matter how old your child is; when they cry, you cry (even if it's only on the inside because you can't let them see you cry).

Alex's autism includes a major anxiety disorder.  Panic attacks can manifest themselves in various ways.  For Alex, one type of anxiety attack is a sudden onset of weeping.  It is the saddest thing you ever want to see.  The chin quivers.  The eyes well up.  Big, wet tears slide down his cheeks.  He hates crying, so he wipes and cries even more.  He had two such episodes last night while he was waiting through a delay in his chemo meds.  They gave him some medication to help him through it, and he finally fell asleep.  I just wanted to burst into tears myself, but I had to hold it together.  On the inside, I was a mess.

3.  Hospital time is a dimension all its own.

Day three of this hospital stay, and we're still trying to get his home medication schedule worked out.  His times don't match hospital "default" times, so he has yet to get his normal daily medication on time.  I have all his "home meds" in the room with me, bubble packed and verified by the hospital pharmacist, but I can't give him those.  I have given his medication schedule to the pharmacy tech and every nurse, but it still doesn't match in the system.

Also, every chemo med has been delivered late from the hospital pharmacy.  Consequently, instead of being released Friday afternoon, we won't get out until Saturday morning.  This hospital stay and chemo has been scheduled for three weeks.

4.  Cancer sucks, but cancer treatment is fascinating and filled with amazing people.

My family's medical knowledge coming into this phase of our lives was quite limited.  None of us chose medical fields for very good reason; this is not our area of strength.  That being said, we have learned, and are learning so much.  It is all fascinating.  I feel like an expert at autism, but Alex has always been physically healthy.  Now we have to learn his illness, his treatment, and how to make it work with his autism.  Occasionally we meet a professional who is slow to catch on to what we need, but that has been few and far between.  Our medical care has been fantastic.

5. Can really does affect the whole family.

Forgive us when we say "we" for everything.  Jessica texted me something the other day and it said "in case we aren't released from the hospital yet."  It isn't really conscious.  And I know full well what Alex is enduring if far more difficult than we can imagine.  But it is "we."  Our family has cancer.  Our life revolves around when "we" have treatments.

6.  Every single day I wish I could trade places with him. 

I so wish I could trade places with him.  I'm sitting at his bedside, grateful that he's asleep.  It isn't fair that he has to endure this on top of all the challenges he has already faced in his life.  And yes, I know all too well that life isn't fair.  But this just stinks.  I also know that in order to trade places with Alex, I'd have to get past his father, his sister, and his aunt who all feel the same way.

In the Quiet of the Morning...

I hate waking up, but I love morning.  My husband's eyes pop open at 3:30 am and he's ready for the day.  My alarm goes off at 5 am and I grumble, but once I'm up, I'm ready to go.  On the weekends, I'd like to "sleep in" until 6 am, but John and the dog always have other plans.  I complain loudly, but when we take off for an early Saturday morning flight as the sun rises, I know that he's been right all along.

I arrive at school every day by 6:30 am; 6:15 if I can manage it.  There are a handful of us there early every morning.  It's quiet, there's no line at the copy machine, and I have almost an hour before the halls are really busy.  I can get a lot done.  I love that peaceful time to really get my thoughts into the day ahead.  When those 21 faces greet me at 7:45, I'm ready to go.

Now, it's early morning in the hospital.  I'm learning new early morning routines.  Alex has been awakened several times to have his blood drawn, get weighed, take meds, go to the bathroom.  He fell back asleep surprisingly fast each time.

I quietly washed up and dressed in the dim light while he slept.  I asked the nurses to watch him while I went to the cafeteria for a quick breakfast (15 minutes, including the elevator ride, there and back; I've learned how to inhale food from years of parenting Alex) while he slept, nervous the whole time because these new people don't yet understand what it means to watch someone like Alex.

He lulls you into a false sense of security and when you let your guard down, things happen.  Two weeks ago, after his surgery to remove a cancerous lymph node, he deftly removed the drain from the side of his neck.  Then he immediately had to go to the bathroom.  My husband and I were scrambling for the nurse call button, trying to unplug the IV pump, and get him to the bathroom "in time."  Last night, he removed the needle that was supposed to be left inserted into his brand new chemo port in between treatments.  It was bandaged up, but it still bugged him.  Despite having me at his bedside, and being on video monitoring, he managed to pull the bandage off without removing his shirt.  I pressed the call button, but the deed was way-done by the time she arrived.  This morning, he removed the DermaBond that was over his incision for installing the port.  I thought he was asleep and was sitting right next to him.  He surreptitiously peeled it off, under his shirt, without me even knowing.  *Sigh.*

We've learned a lot in the past nine months, but there's more to learn.  There will be many more quiet mornings in the hospital.  Three rounds of inpatient chemotherapy, followed by a stem cell transplant.  It will be an opportunity for both learning and teaching, I think.  I have more to learn about Alex's illness and treatment.  And I have more to teach to help the nursing staff take care of Alex.  I tell them he needs to be watched closely, and they say they understand, but then they walk away.  When I call them back they say, "Boy, is he fast."

Autism and Cancer make things much more interesting.  Being a nonverbal adult in a hospital setting has challenges as well.  Being a nonverbal adult who is physically independent, and strong, and determined, and who understands what you say to and about him, is something most of the professionals don't seem quite ready for.  If Alex wanted to, he could just get up, get in the elevator, and leave.

Caring for Alex requires "constant vigilance!" as Alastor Moody from Harry Potter would say.  The next few months will be an interesting ride.

Now What?

In case any of the people in my life are wondering: yes, I know I'm a control freak.  I strive to be organized, in charge, and on top of things.  I like to be right.  I'm not good at admitting weakness, or comfortable with being wrong (even when I'm able to admit it, it's painful for me).  Cancer flies in the face of every aspect of how I try to live my life.

My dad died of cancer, so it's not like my life has been untouched by this awful disease.  He was 68 years old when he was diagnosed with advanced, terminal, esophageal cancer.  They did surgery to remove as much as they could, but the surgeon told us when he came out of the operating room that dad would not survive this disease.  He passed away less than a year later.  It was a heart wrenching year for my whole family.  Dad had lived with Parkinson's Disease for a dozen years, and he actually expressed relief at the cancer diagnosis saying he would rather die of cancer than spend 20 more years with Parkinson's.  I saw my dad nearly every single day of his last year, and I was at his bedside with my mom and my husband when my dad passed away.  I did not see him the day before he died.  He called me to tell me not to come over; to stay home and rest, because Jessica and Alex (age 4 and 6) both had pneumonia and I had been trying to take care of them, work, and see my father daily.  He told me he loved me.  That was the last conversation we ever had.  He was not conscious when we were called to his bedside the following morning.

My childhood was mostly good.  I was raised by loving, imperfect parents and the youngest of five siblings.  They were enough older than me, that by the time I was a freshman in high school I became more of an only child.  I'll spare you the trials and tribulations of our big, messy, headstrong family.  We had our ups and downs, as families do.  What I will say is that I felt that my life was not within my control for a lot of my childhood and adolescence.  I also felt that I it was my job to be a "good girl," to take care of people, and to make things better.

One of my primary goals as an adult has always been to be in control, to be proactive, and to make things better.  I'm finally, at age 52, catching on that I've been deluding myself for decades.  Life is just messy, and tumultuous, and difficult, and beautiful.

I used to think that Alex's autism was the most painful thing I had experienced in my life.  I'm ashamed to say that now.  His autism has brought him tremendous challenge and, at time, pain; and that has been true for our family.  But I could not love him any more, nor could I be more proud of him, if he didn't have autism.  Autism doesn't define him, or our family, but it is an integral part of him.  Just like his smile, his sense of humour, and his blue eyes.  Alex's autism, and certainly his life, is not a tragedy.  Now that I'm faced with the very real possibility of losing him, I want desperately to hang on to every messy piece.

Today we go to see a cancer specialist to find out what's next.  The cancer isn't gone.  More treatment is undoubtedly needed.  Writing this without knowing what's next is, in itself, a risk for me.  Will I be embarrassed that I shared my feelings if the news is better than I expect?  Who am I kidding, the news can't possibly be good!  All of that is rolling around in my head.  So, I'm taking a risk.  I am, literally, throwing up my feelings on the page this morning.  And then I'll dry my eyes, take a deep breath, and think, "show time."  I'll put on a brave face, go pick up my son, and John and I will drive to the hospital, meet with the doctor, and then we'll do what needs to be done.

I may have to accept that I am not in control of this situation.  That doesn't mean I'm giving up the fight.  As John said to me this morning, "We'll do what needs to be done.  We always do."

One Step Forward, Two Steps Back...

When Alex was in his first years of elementary school, it seemed that every accomplishment or period of growth was followed by a time of challenge.  We started saying, "one step forward, two steps back."  He'd make some progress with communication, or interaction, or self-regulation, but then it was as if it cost him so much to make those gains, he had to just fall apart for awhile.  At times, it felt like he was regressing, but then - eventually - he'd re-emerge with that new skill intact after all, and layer on something new.  It was certainly an exercise in patience for all of us.

Alex's cancer journey has been remarkable for all of us.  Like everyone's cancer journey, I suppose, more has been asked of our family than we ever thought possible.  Alex has shown tremendous resilience, strength, and trust.

Despite a punishing chemo regimen, his side effects have been relatively minimal.  Fatigue has been significant, but he is good at taking the time he needs, and his caregivers at his home, and our family, all make sure Alex has the opportunity to rest when he needs it.  (Ironically, the one time he resists rest is during chemo.  He cannot let himself give in to sleep.  He fights sleep every step of the way.)

His appetite and weight have held steady.  His attitude has been positive.  We've felt "lucky."

In the last month or so, the anxiety has increased.  You may wonder how we know he's more anxious, since he doesn't have the words to tell us.  All I can say is that if you know Alex, you just know.  There is a furrowed brow more often.  He rocks to try and sooth himself.  Although nonverbal, Alex is never silent.  If you have lived with Alex, or gone to school with Alex, you know when he is nearby.  He has a very distinctive way of vocalizing, and his moods are evident by the sounds he makes. When he's feeling good, it doesn't take a lot of rocking or sound to make things right.  These days, there are a lot more of both.

It seems likely that some of the anxiety is biochemical in nature, as Alex's body continues to process the toxic chemicals that have been pumped into his system over the past six months.    It also seems likely that he experiences sensory and cognitive side effects that may be unsettling to him; many cancer patients report changes in taste, sensation, and something called "chemo brain."  And there's no way for us to know what part is emotional.  Is he scared that he will die?  I don't know.  We talk through everything with him, imagining the parts of the conversation he might play, or the questions he might have.

August was a respite.  No appointments, no treatments, no chemo.  A chance to live life.

He had a PET scan at the end of August.  Our third trip to the same hospital.  There aren't a lot of "Alex's" coming through their doors for sedated PET scans for cancer.  The staff all remembered and recognized us.  We were excited and hopeful.  This scan would prove that the chemo had worked.  We were ready for our victory dance.

Last week we saw Alex's oncologist for the results of his PET.  The doctor was running late, so we were in the waiting room for over an hour.  He was in with a new consultation.  Any time his oncologist is late, I tell myself to be grateful that we aren't the most needy patient on the list.

I could tell from his body language when he came in the door that the result was not what we wanted to hear.  He called it a "mixed result."  All of the cancer from the previous PET was smaller and inactive, but there was a new spot.  He wasn't sure what it meant.  The radiologist hadn't used the scale he wanted, the one they use specifically for Hodgkins, so he was frustrated.  It would have to be re-read.  But the spot was concerning.  He wanted us to go back down to the specialist at the teaching hospital.  "Try not to worry.  He looks good."

We left, feeling deflated, trying to stay positive.

Our doctor called the lymphoma specialist.  The specialist said we need to biopsy the spot right away.  So they call the surgeon who did Alex's surgery last winter; the one where we found the cancer in the first place.  But this was a Friday afternoon.  Before a holiday weekend.  So nothing got scheduled. Tuesday rolls around.  Nothing. Today - Wednesday we get a call.  They want to schedule surgery for next Thursday. A whole week away.

More waiting.  But the surgeon needs to see the PET.  There are over 40 lymph nodes in the part of the neck where he needs to operate.  He can't go in blindly.

Now what?  One step forward - all of the old cancer responded; and two steps back - a new spot.  New cancer?  What next?

I'm just trying to breath, in and out, in and out.

Now What....

prag·mat·ic

praɡˈmadik/

adjective

1. dealing with things sensibly and realistically in a way that is based on practical rather than theoretical considerations.

   "a pragmatic approach to politics"

   synonyms:

   practical, matter-of-fact, sensible, down-to-earth, commonsensical,businesslike, having both/one's feet on the ground, hardheaded, no-nonsense;  informalhard-nosed "she remains pragmatic in the most emotional circumstances"

Definition from Google.

Everyone seems to have a joke or a story for the "glass half full" vs "glass half empty" views of optimists vs. pessimists.

I really don't fit into either camp.  I prefer to think of myself as a pragmatist.

Being pragmatic is how I've gotten through Alex's cancer.  For me, being pragmatic means that in order to deal with something as terrifying and life altering as cancer, I need to focus on the bits (however few they may be) that are within my control.  

Doctor's appointments, making sure Alex was eating, keeping everything clean and germ free, writing lesson plans for my sub, all of those things provided the illusion at least that I was doing something.  

Now that chemo is done, I feel a bit adrift.  I'm thrilled, don't get me wrong, but I'm back to feeling helpless.  I'm trying to stay positive, but I'm not quite ready to say that Alex has "kicked cancer."  Maybe I'm afraid I'll jinx something somehow.  We're back to a waiting game.  Waiting for the PET scan.  Then waiting for results.  And then just waiting for time to pass and prove to us that Alex's cancer won't come back.

Except I know I can't live my life waiting.  I just have to live my life.  And Alex has to live his.  Knowing that cancer could come back, but also knowing that statistics for Hodgkins are extremely encouraging.  And looking at Alex and knowing that he is so much stronger than he was in February.  His energy is slowly returning.  He was so sick by the time his cancer was diagnosed.  I felt like every day and alarm was going off in my head.  I knew that he was getting sicker by the day.  But now I can almost see him gaining strength by the day.

Too often, I talk about when "life will settle down."  John reminds me that life never really settles down, and if I keep waiting for that day, I'll miss my life.  He's pragmatic, too.  Life just is.  It's messy.  Sometimes it's harder than others.

And I know he's right.  It's not like life was on hold during Alex's illness.  Many things took a back seat, that's for sure, but there were still so many things to juggle.

We continued to work full time throughout his illness.  Thankfully, we had amazingly supportive employers, business partners for John, and coworkers who helped pick up the slack when we needed it.  We learned to say yes when help was offered.

We said good-bye to John's mom as her four year battle with Alzheimer's came to an end in April.  Time was spent at her bedside in those last weeks of her life.

My own mom has not been well.

Jess got married, which was a joyous celebration for our family, but hectic in its own way.

And I know that in the days, weeks, and years ahead, life will continue to be messy.  Sometimes filled with joy, sometimes heartache, and everything in between.

I'll just keep reminding myself to stop wishing and waiting for life to settle down, and to just embrace whatever life brings at the moment.

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