Suspended reality

Our reality has been suspended from fine threads above our head.  We thought the threads were made of some indestructible material, carbon fibre?  As the threads snapped this past Monday and reality landed in our lap with an explosion, we realized the threads were just that.. threads.  And those threads were worn thin.

So there is no easy way to think this let alone to say this other than to say it.  Roger's cancer has spread again.  He had a CT scan on Monday which scanned from his pelvis to the top of his head.  The normal process is to have the scan and then there is a follow-up results meeting several days later with the oncologist.  Instead, we received an urgent call from the oncologist's office asking us to come back immediately. And in one single split second the world stopped.  It crashed to a stop. A huge horrific stop.  Even optimistic me couldn't find a "no, its not going to be that bad." thought.   I looked at Roger (I went with him to the oncology center for the scan) and saw terror reflected back at me and know I was a mirror image back to him.  So, we gathered our stuff and quietly walked back out to the car and drove back to the oncology center. All the while, I'm pretty sure we didn't take a breath.  Once in the office, we were rushed through to an examination room.  This NEVER happens.  There is always a wait no matter what.  Not for us.

Dr. Birhirray immediately came into the exam room as we sat there holding hands.  He immediately walked up to Roger (who had stood up to greet him) and hugged Roger all the while saying "I'm sorry.  The news isn't good" and then turned to me to hug me.  Somewhere in those 1-2 minutes a tremendous roar of white noise took over my ears.  My heart stopped beating and I slipped back into my chair.  Dr. B pulled a stool up and sat in our personal space knees wrapped into our knees.  And then, Dr. B looked into our eyes and told us the cancer had spread again. Spread again.  Roger sat stoically. I silently shattered into a million pieces.  The cancer had spread to Roger's brain.  And quietly, as they are now, tears slowly made a path down my cheek.  Roger on the other hand had assumed the role I had so often held in the past, listening to Dr. B and asking a few questions devoid of emotion.  Dr. B said the radiologist called him immediately when he saw brain lesions.  Dr. B asked us to stay in the room.  He wanted to go back to his office and see the rest of the films (he had only received a verbal from the radiologist) to see how the cancer in Roger's chest looked.  As quickly as he had come into the room, he left.  And like a tornado or tsunami, he left a wake of devastation.

We sat silently trying to process the unfathomable.  Trying to comprehend the incomprehensible.  And then the emotional flood gate opened for us both. And we drowned together in this torrent of emotion. There were no words either of us could say.  Nothing.  Only feel the raw emotion and hope we were both having a really horrible nightmare. 

After a while, Dr. B returned.  He had read the entire film.  The cancer in Roger's chest was still present but had not grown.  Definitely tumors in the brain but he couldn't say how many. All he could say, "This is very serious.  I want you to see Dr. Leagre, the radiation oncologist downstairs."  The recommended course of treatment is radiation of the brain.  No chemo.  Apparently there is this thing called the blood/brain barrier where the brain is protected from treatment delivered via the blood stream so chemo technically doesn't reach/treat the brain.  Dr. B slowly explained to us the severity of this spread of cancer.  He explained the headaches Roger felt last week were most likely as a result of the brain swelling and some bleeding from the tumors.  So, radiation is imperative to stop or slow the growth.  If we don't do radiation, the deterioration will be rapid and will be painful.  More headaches, confusion, loss of balance, and more horrible stuff.  If we don't do treatment, time will be precious and little.  Despite having a note pad on my lap, and a pen in hand, and internally screaming at myself PAY ATTENTION!!...I'm pretty sure I only heard half what he said.  Radiation would not only prevent or help reduce the chance of the conditions just mentioned but would also buy more time. 

Having heard all we could hear, we decided it was time to go downstairs to talk to the radiation oncologist to get his take on all this.  Dr. B invited us to come back the next day or the day after once we had processed everything we heard.  He knew we would have more questions once we better understood the gravity.  So, we made our way downstairs to Dr. Leagre's office.  Its all like deja vu.  We had done the radiation dance over 2.5 years ago.  Deja vu. 

I will share with you a total Roger moment we had despite the horror of the situation.  The radiation nurses took us into an exam room to interview us, filling out forms.  At some point during the course of the conversation Roger said, "oh, we're not doing treatment today?  And I wore clean underwear".  I turned and looked at him, shaking my head and smiling and replied "I would hope EVERY day you wear clean underwear".  Meanwhile these two very nice girls kept looking down at their charts without looking up at us.  Roger than said, "well no.  Usually I don't wear any underwear".  Oh, nice.  Way to make an impression.  They both caved and started laughing.  Laughter doesn't fix anything...but it certainly can smooth the edge of a ragged heart. 

Fast forward. Dr. L said he wanted Roger to have an MRI (which he did yesterday) to determine how much the spread.  Once Dr. L knew how many lesions there are, then he could recommend the best treatment.  Basically we were faced with either "spot" radiation with intense very high level radiation to individual spots.  Only used for 2-3 spots, maybe 4.  Or the other treatment is whole brain radiation.  My pathetic brain can only envision frying a brain.  Whole brain radiation literally radiates the entire brain at much lower doses but it happens every day for approximately 10-14 days.  Potential side effects: swelling of the brain (treated with steroids), confusion, exhaustion.  Those are the biggies.  Dr. L said he really did not believe it would be hard on Roger especially given the sheer hell Roger has been through over the last 2.5 years. 

The MRI revealed Roger has 15-20 lesions in the brain. Very serious.  Only treatment option is whole brain radiation.  That's it.  So, we were faced with the decision of radiation or no radiation.  And faced with a much larger reality we have long been ignoring.  There is no such thing as forever.  I thought we'd be together ...forever.  Reality is now suggesting this won't be the case. We used to talk in terms of years but now are faced with talking in terms of months.

After three more doctors' appointments today - one with the radiologist to answer follow up questions we had, one with the oncologist to answer follow up questions we had, and one with the pain management doctor to try to control the non-stop pain Roger has - we have made a decision. And, the decision after our own research, and the repeated conversations with the doctors, Roger has decided he wants to proceed with radiation.  He, we, are going to keep fighting the fight and doing all we possibly can.  AND, we are going to focus on each and every day as it comes...living life to its fullest as best we can.

I'm so sorry to deliver this news via the blog but simply cannot do it in person.  It hurts too much.  Next week, it will be less raw and we will hopefully... be able to communicate better. Its hard to believe its only been just over 48 hours ago when this part of the journey started.  And it still doesn't seem real.  I'll write more tomorrow.  Its taken me days to get this out to you.

So, now you know all we know.  We are both crushed.  None of this makes sense.  We both - me especially - are going to still hope for a miracle.

much love to all, a & r