So much to process...

This is a journal entry I wrote after a particularly vivid dream last week...

"Last night I dreamt I had a new baby, a boy.  He was so chubby and perfect and soft.  I felt so excited about this new challenge: having Maggie (still a baby at almost 1 year old) and a new baby boy.  I spent time getting the laundry ready.  Anaise was there.  My aunts too.  I had to help at the school of one of my kids on the day of his birth which made me so mad.  I had an emotional breakdown in the classroom trying to make the teacher feel guilty that I was there when I needed to be with my baby.  But then when I got back to be with the new baby, he was gone.  And Maggie too.  I was worried.  I hoped one of my aunts had taken them.  I busied myself with the laundry while I waited for them.  I looked for them in random places like the washing machine and dryer.

When I woke up (the kids and Matt let me sleep in this morning), I felt a sense of sadness that there is no baby boy.  And there probably won't ever be.

Where was Matt in my dream??"

We both have a sense of impending doom.  We can't even vocalize it.  It would be too sad, to hard to bear, a reality so awful we don't want it to possibly come true.  It would be my worst fear.  It would be a cruel joke played by God in my opinion.  My hardest trial actually played against me to test me.

Several years ago, shortly after moving into this house, I was overcome with a foreboding of Matt's early death.  It felt so strong and so real, like a premonition, that I was anxious, crying, scared, etc. for days and weeks.  It prompted us to action.  We got a life insurance policy on him--that's how serious I felt it was.  I got a powerful priesthood blessing from a church member, Brother Tuia.  It was like a voice from heaven comforting me, reassuring me, calming me.  And all that anxiety went away.

That was five years ago.  And Matt has now been diagnosed with sarcoma.  My worst fear has moved from unfounded to likely.

He has had two blessings that have reassured him (us) that he will get through this test and raise his family.  "This is a test.  This is only a test."  Wouldn't it just be the saddest thing for the world not to know Matt as a Grandpa?!  He is the greatest Dad and I look forward to being grandparents together.

We both feel it.  We both worry that it will spread.  That it will grown in other parts of his body and then he will die.  How can I even write these words???  Because we feel scared.  We are grown ups and we feel fear like little children.

But we also have hope.  We have peace in the knowledge that we were sealed eternally in the temple on our wedding day which means we are a forever family.  Even if he is taken from me early, we will be husband and wife in heaven.  There is so much life to live right now: 6 active, giggly, angry, learning, changing kids to raise in this house.  Lots to do: work, cook, clean, play, serve, laundry, sleep, rest.  So much to keep us busy.  So much to be thankful for.

Over the past couple of weeks since I last posted Matt has spent his time learning how to manage pain as he tries to heal from the severe radiation burn.  We were both surprised at how bad the burn got.  It continued getting worse for several days even after radiation was over.  It was so raw and in such a tender area of the body that walking and even standing and sitting caused severe pain.  He spent Christmas break lying down basically!  He has taken off this week of work as well because lying down at work isn't a real option in his profession!

He tried using a Fentanyl patch in addition to the naproxen and the oxycodone but even two very strong pain medicines wasn't managing the pain.  I advised him that maybe this kind of burn doesn't respond to pain meds, maybe the oxycodone wasn't even helping (because it didn't seem to be).  This was seriously bad advice on my part.  What a mistake.  A day after stopping the oxycodone and using one Fentanyl patch only, Matt was in so much pain it was unbearable.  I called the doctor's office who advised us to try more patches and continue with the oxycodone as needed.  We did this and he still felt the pain.  What finally worked was using three patches along with the oxycodone every 4 hours.  We both could tell the difference when the third patch was applied.  Well, he looked pale and he felt hungover, but FINALLY the pain was gone.  And he could smile.

Over the past few days I have been amazed at the healing taking place.  It is getting better!  Very slowly but surely, his skin has gone from gruesome, raw and bleeding to new, pink and healed.  I wouldn't have believed how quickly it could happen once it started the healing process.  He can now sit for periods of time.  It is exciting to know that the skin should be healed enough for him to go ahead with the surgery that is scheduled for January 25th.  We have been waiting for this surgery since his diagnosis.

We've had the opportunity to do more research online.  It's very discouraging to finally find blogs of people who have also been diagnosed with this rare form of cancer only to discover that shortly after the blog begins, the blog ends.  It might last a year or two (in one case, it was seven!).  It is fascinating to read about a person's experience with diagnosis and treatment, to learn what their doctors told them, to understand their feelings and to compare their treatment plans to ours.  But as we read on, we read of metastases. We read how chemotherapy and radiation are unable to kill the disease.  Then we read an obituary.  

A friend of ours with cancer has newly detected spots on her liver.  Another friend has questionable nodules on her spine.  At the same time, there are several members of a sarcoma Facebook group we belong to who have survived the disease for years and decades.  Why do some cancer warriors experience metastases and others don't?!?!  Can alternative therapies make a difference?  This is the quest I am currently on.  I am studying nutrition, supplementation, and anything else that sounds legitimate that can make a difference.  We're not going to try everything.  That is too costly and some of the options sound silly or don't make sense.  But we are willing to learn and pray about other therapies to determine what feels right for Matt.

There is so much to process.  There is the reality of the pain and the healing and the treatment.  There is learning how to ride out the roller coaster of worry and hope and fear and faith.  There is balancing the reality of the diagnosis with the belief that God can heal.  There are changes because of the treatment.  There are no more children in our immediate future.  There may be other temporary or permanent side effects from the radiation for Matt to deal with.  His upcoming surgery may be invasive.  The radiation oncologist talked with us about her concerns in this regard.  A colostomy is a serious possibility.  I know we will get through all of it okay.  We are in this together and we can do anything.  But it is a lot to process!!!