You must do the thing you think you cannot do. - Eleanor Roosevelt

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do.

-Eleanor Roosevelt

You must do the thing you think you cannot do.

I admire Eleanor Roosevelt, and she has many quotes that inspire me.  I have the last line of the one above as part of my signature on my school email this year.  I was thinking about that quote as a way to push myself to always be a better teacher.  I needed that thought to spur me on at the beginning of the year as I learned the challenges of this year's group of kiddos.

Little did I know that there was so much more in store for me....

The story of how we got to Alex's cancer diagnosis is swirling around in my head this morning.  I've told it many times, and I replay it in my head even more.  People are curious, or maybe just polite, but it's actually a bit cathartic to retell it.   Maybe because, even now, it doesn't quite seem real.  It's like it's happening to someone else.

Here are Alex and John, last spring, at the Domes in Milwaukee.  Father and son, almost twins in appearance, body shape, and style.  That's important, because that's how I first knew something was different; something was wrong.

Here's my guy, helping me bake.  In both photos, take a look at his neck.

Over Christmas, when Alex was home, I noticed that his neck looked different.  It looked fuller to me, but I wasn't sure that it really was different or if it was just me.  I still am not even sure how to explain it, but something seemed off.  During the holidays, he had a cold with a sore throat, followed a short time later by a brief bout of stomach flu.  He just didn't seem to bounce back.  He was tired, and his appetite was off.

In January, Alex was home again for an overnight.  John was gone to Arizona for work.  I was helping Alex get ready Saturday morning and planned to take him back to his house.  I looked at him, and I knew something wasn't right.  I started feeling the glands in the side of his neck, fully realizing I had no idea what I was actually looking for.  I didn't really feel anything, but then I felt under his chin.  That's when I found it.  A lump.  A large lump.

Allison was on her way over because we had some errands to do.   I had her feel the lump.  She agreed that it wasn't right.  It was Saturday, so I decided to go to Urgent Care.  (Also, our insurance changed Jan. 1 and our primary care physician was not in our new plan.  I cried in my principal's office when I realized that I could no longer see my doctor of 29 years.) Getting a new doctor was on my January "to-do" list, but I hadn't done it yet.

I took this picture at home before taking Alex to the doctor on January 17,  and I printed a picture of Alex where his neck looked the normal size.  Allison and I took Alex to Urgent Care.

I explained all the symptoms - lump in the neck, full neck, fatigue, lack of appetite. I showed her the "before" picture.  The doctor felt the lump and said, "That shouldn't be there.  You need to see an ENT, you need a CT scan, and it needs to come out."

Monday the ENT called, and Wednesday we went to see him.  I explained the same story and symptoms.  He examined Alex, felt the lump, and measured the lump.  He wasn't particularly concerned about the other symptoms and I had no idea at that time if they were all related.  The lump was certainly an obvious problem.  The doctor said we'd need a CT scan.  We talked about whether or not to do it sedated.  The doctor would have preferred not to sedate, but we (Allison and Alex's caregiver, Tara, were there, too) were all pretty insistent that sedation would be necessary.  We went to the schedulers office to schedule the procedure.  She got on her computer and her phone, and started trying to make the arrangements.  She was typing away, and then suddenly she said "The insurance sent it in for review.  We can't schedule it today."  It could take up to a couple of weeks she told us.

So we got sent home.  It took another week of waiting, receiving a denial, appealing the denial, a peer to peer review between the doctor's office and insurance, with the end result still being a denial.  Meanwhile, I am calling the doctor every day, because Alex isn't eating, and is getting sicker and sicker.  He didn't seem to be in pain from the mass, but he was not well.

The doctor ordered an ultrasound and needle biopsy.  By this time, John was home from Arizona.  We went to the ultrasound.  The very nice technician was quite surprised to see our family.  On paper, Alex is a 24 year old man.  Due to privacy laws, it is not shared from one doctor or procedure to the next that Alex has autism and is nonverbal.  Surprise!  In walks our family.  She did a wonderful job with Alex.  She talked directly to him, respectfully.  Alex did a wonderful job.  He complied well with the ultrasound.  The ultrasound confimed a 4 1/2 cm x 4 1/2 cm mass under Alex's chin. 

Then the very nice radiologist came in and prepped Alex.  The radiologist took out a tray of very long needles.  Alex was supposed to lay still and have a stranger poke a very long needle into his neck in a spot he couldn't see.  Alex sat straight up.  We got him to lay back down.  He sat up again.  The radiologist realized this wouldn't work, and said we'd have to reschedule and do the procedure under general anesthesia.

We sighed.  John asked what we could do differently, because we've had this unfortunate experience before - that a test or procedure was needed, and Alex's special circumstances were not communicated to the people that needed to know. 

As the radiologist was processing the situation, and thinking about what to do next, he told us  he would recommend surgery to the ENT, and also recommend that the ENT not wait for the biopsy or do the extra sedation to get the biopsy, since clearly this mass had to come out.  Why waste more time and put Alex through more procedures when clearly surgery was going to be the final answer.

Home we go.  We wait for the ENT to call.  The office calls and sets an appointment for two more days away.  It's almost two weeks since the first doctor visit, and I feel like Alex's neck is growing.

We go back to the ENT, and discuss our options.  He recommends surgery.  We say yes.  (I was ready to say yes two weeks ago, I think to myself.)  There are about four different, benign, things the mass could be.  It could also be cancer.  They don't know.

They schedule surgery for the following Thursday.  The PA examines Alex for the pre-op and finds an enlarged lymph node on his collar bone. 

"Hmmm.  Was that there before?"

"No.  What does that mean?"

"I'll tell the doctor."

And it wasn't brought up again.

Surgery goes extremely well.  The mass comes out easily and is all self-contained.  It was the size of a golf ball, in Alex's neck and just under his tongue.  "No wonder he wasn't eating!" we think.  John and I stay overnight in the hospital with Alex.  He does really well.  He's quite a trouper.

The mass his gone, but by now he looks like Winston Churchill.  His neck his huge.  During recovery at home, he sleeps a lot and eats almost nothing.  And we wait for biopsy results.

At this point, he looks like he has no neck.  But no doctor we've seen has ever seen him before.  The lump is the only topic of conversation.

I call the ENT office daily, checking on biopsy results.  Nothing,  I promise John that I'll stay off the internet.  He's worried about me, and reminds me that every time you look up a medical symptom on google it comes back with dire results.  It won't change the outcome, and it will make you crazy in the meantime.

Alex is due for a follow up appointment for suture removal, although they didn't end up using sutures, they used superglue.  The night before the appointment (at this point we're six days post-op with no news about the biopsy) the receptionist from the office calls and asks if I still need the appointment since he didn't get stitches. 

"They wanted us to come in anyway and have it looked at.  Besides, we still don't have the biopsy results."  I say.

"Oh?  I'll check on that."

Hold for about 3 - 4 minutes.  Terrible music.

"Oh yes, they want you to come in."

"Are the biopsy results in?"

"They want you to come in."

I hang up.  Well, that's not good.

John is gone and I'm home alone that night.  I google "enlarged lymph nodes on collar bone."  Every hit that comes up is cancer.  Enlarged lymph nodes on the collar bone is not good.

Hodgkins Lymphoma seems the likely diagnosis.  Finding a mass in a lymph node in the neck is commonly how it's diagnosed.  Once it's removed and biopsied, a signature cancer marker is found that indicates Hodgkins.  An enlarged neck (check), fatigue (check), loss of appetite (check), and weight loss (check) are key symptoms.

When John gets home, I admit I looked on the internet.  He's understandably upset with me because I broke my promise and now I'm upset and yet I don't have real information from the doctor.  We both sleep fitfully.

The next morning, we go to the appointment with the PA.  She starts talking.  Her nurse brings a stack of papers and places them upside down in front of her.  The ENT comes in.  They look at us.

"We have some bad news.  The biopsy came back, and it's Hodgkins Lymphoma."

I know, I think to myself.  I have imagined this conversation continually for the last 18 hours.

John and I cry.  They explain.  They give us the handouts; the upside down papers the nurse brought in, not really so discretely after all.

"I knew this is what you were going to tell us." I say.

Alex is sitting in the exam chair, wondering why his parents are crying.  Does he understand anything at this point?  I don't know.  I hug him, I touch his face.  He looks at me.  How do you treat someone who has autism and is nonverbal for cancer?  I don't know.  And I suspect they aren't really sure either.

You must do the thing you think you cannot do.

I don't know how we're going to do this.  But I guess we're going to have to figure it out.