C.M.L.

Josh has cancer.  We've said it a million times in our heads.  We've even said it out loud.  And right now it hasn't gotten any easier to say but someday it will feel normal.  It is our new normal.
We are under 48 hours into this and everything is so new.  We are having a hard time wrapping our brains around the endless amount of information, opinions, chemistry and frankly stuff that at this point looks like it is written in some alien language.  The diagnosis at this moment is CML (Chronic Myeloid Leukemia).  And we've been told that "if you are going to get cancer, this is the one to have".

Josh had been feeling off for a few months.  Just a lot more tired, normal activities became mountains.  He was losing weight quickly and without real reason (about 15lbs in the past 6 weeks).  He was either freezing cold or dying of heat.  Dizziness was becoming a problem too.  Of course, this is all in hindsight now.  All we knew was that he felt off.  We had talked about getting a physical and he agreed but we never got around to it.  As Josh likes to say (he's a typical guy).  Finally on Monday night (March 18, 2013) he was helping at Noah's baseball practice and suddenly felt dizzy and light headed.  He started to stumble off the field but could not make it on his own.  Another coach helped him off the field so he could lie down.  He eventually drove home and told me what happened.  He looked pale and gray and I told him to get in the car.

I took him into urgent care not really knowing what I was going to tell them.  He just doesn't feel right, didn't seem reason enough.  But, I knew this was my chance for him to get that physical.  They asked some questions, got some random vitals (none of which were alarming) and then checked his body over.  His spleen was enlarged.  There was a bit of blood in his urine.  His oxygen level in his blood was a bit low.  That's it.  The Dr. felt that he needed to have more tests run but they couldn't be done there.  I think she suspected.  They sent us right over to the ER.

They took us back quickly after we got there.  We were asked the same questions as we were in urgent care.  We gave the same vague answers.  They decided on some blood testing.  Josh had never had and IV before.  Soon he'll be a pro.  They took 4 vials of blood.  The Doctor told us he was looking for anemia, mono and not likely, but possible, leukemia, just as a precaution.  They started fluids and left us in the room.  We didn't worry.  We just wanted him to feel better soon.  The nurse came back occasionally and said most of the labs were back and looked good.  They were only waiting on the CBC (complete blood count).  She left.  Later, he got overly hot again.  We paged the nurse for some ice water.  She didn't come.  I went out to find help and realized there was commotion and it that someone had just been brought in with a stroke.  I found a random nurse and asked for some water and went back to our room to wait for it.  This is where it gets hazy.  Two nurses walked into the room at the same time and it seems to me that they each were unsure as to what the other was doing.  One had water.  One did not.  The nurse without the water tried to stop the nurse with the water asking if she had cleared the liquids with the Dr.  She replied that she had overheard the Dr. and that we would be admitted to the hospital over night and that water was fine.  That was the first we had heard anything like that.  Why were we staying over night?  What went wrong in his blood and what did the CBC show?  I googled.  I shouldn't have.  Leukemia.  The symptoms matched.  But I talked myself down and decided to wait.  Eventually the Dr returned.  You could tell he hated it as much as us.  It was Leukemia.  His blood counts were off, especially his white blood count was over (400,000).  It had to be acute leukemia because he was too young for chronic.  We would be admitted and he would likely begin Chemo in the next couple of days.  It was the darkest, scariest, and loneliest moment of my life.  I couldn't believe it.  I just shook.  My whole body shook uncontrollably.  I was in shock.  Josh and I fired random questions, the Dr did what he could but told us that the Oncologist would meet with us in the morning and we could go from there.  We called in family and Josh was given a Priesthood blessing by his father and close friend Jason.  The spirit was there and we felt somewhat comforted.  As a family we were moved to another room on another floor.

We stayed in a small room with one bed and a cot for me.  The nurses were very sweet and brought great care.  Eventually, Josh's family left and he and I were alone.  The spirit was strong and we felt love and strength.  It was a long night.  There was little to no sleep and we watched most seconds just pass by on the clock as we waited for morning and the Oncologist.

At 4:30 in the morning, just as Josh was finally starting to sleep another nurse came to draw blood.  She needed 8 vials.  It was harder to find a vein this time and Josh was able to give 4 vials from one sight and 4 more from another.  After this there was no sleep.  In came an EKG tech, more vitals nurses, breakfast and Josh's mom.  Then we waited again.

Our First Miracle:

Just as we were discussing the upcoming chemo and Josh was on the phone explaining things to work, a man barged through the doors.  He introduced himself as an Oncologist, but he was not the woman we were told to expect that morning.  He asked Josh to get off the phone as he only had a few seconds and would not be able to stay long, then he asked:
What have you been told?
"Acute Leukemia and that we will be starting chemo in the next day or two"
Who told you this?
"The ER dr last night."
He was wrong.  You don't have Acute you have Chronic.  Chronic Myeloid Leukemia.  Big difference.  It's not treated with chemo.  It's treated with an oral medication and has incredible success rates.  The guy (Dr. Drucker) who invented the medication works out of OHSU.  This pill is a huge success.    I have to go to my practice.  The Pathologists was to look at the blood smears today to further confirm that it is CML.  I'll be back at noon to talk more.  He made it seem that Josh will be fine.

And then he left.

If you are going to have cancer, this is the one to have.  That's what the nurses kept saying for the next few hours as we waited, again.  Another Dr. came in a couple of hours later.  She was a general Dr. and further agreed with what the Oncologist had said before and told us that Josh's blood was undergoing a blood smear.

At about 1pm the Oncologist came back.  I don't remember much.  I just remember feeling that he further was explaining Josh's diaognosis.  He told us that we could go home that night and that he would open his practice on Thursday to do the Bone Marrow biopsy and talk to us further.  He explained that Josh will never be cured of cancer, but he could get to complete remission while taking this medication.  He will have to be medicated forever and watched.  We were told that it was very probable that Josh will take to the drug and could be feeling well in a few weeks.  We were ecstatic!  He left quickly again leaving us feeling assured.

We finished Josh's ordered IV fluid and were able to go home.

We still have many questions and concerns.  We don't know a whole lot.  But, here is what we know right now.

Josh has cancer.
We have been told it's Chronic Myeloid Leukemia.
He will mostly have this the rest of his life.
He could of had it for months to years before the symptoms showed up.
The Geneeva medication and others are very successful.
Tomorrow we have more testing and more answers.

Josh's symptoms are apparent.  He is tired easily and night sweating has become a huge bother.  There are many times in the day where he feels fine.  Today he went for a walk to see a friend.  Other times he is tired, dizzy and really just looks sick.  It's so hard to watch him struggle.  He is strong and has a great attitude and great faith through this.  We know that the Lord is right beside us as we walk through this.  We have felt his hand.  We know he has given us a miracle already.  That is what we continue to look for through this process.  We still have a long uncertain road ahead as we learn to live with cancer, but we will focus on finding the joy in the journey.  Tomorrow is a big day, and we would appreciate all the prayers you can utter.
until tomorrow....