Say When

Home again!  This is what we came home to.

When I about 4 years old I used to get babysat by our neighbor named Wen.  She had kids the same age as me and my siblings and we always had a blast at their house.  One afternoon we sat down for lunch and she appeared with a gallon of milk.
"Say When." she told me as she poured the milk into the cup.
I came from a family where the amount of liquid poured into a cup was never dictated by the child.  Mom had a habit of filling our glasses half full in order to cut down on clean up if we spilled it.  She never let us have a full glass of anything.  She carried this habit on well into our teen years and we started calling a glass that was half full a "Mom full."  It was common to hear statements like
"Can you get me a glass of juice, and don't make it Mom full!"
Thus, in my 4 year old state, this concept of telling an adult when to stop pouring was far beyond me.  I watched in awe as Wen poured the milk into my cup until it was nearly overflowing.  It was the fullest glass I had ever seen. 
Wen stopped pouring and looked at me.
"You didn't say when!" she said.
"Why should I say Wen?" I asked, positively perplexed at why I would call out her name when she poured my milk.
"You say When, when the cup is as full as you want it."
A light bulb flicked on in my head.  What I heard was that you said that name of the person who was giving you something when you had enough of that item.  I had mixed up a common statement of saying "When" with my neighbor's first name!
I remember going home that night and watching as my Mom filled my glass with water.
"Mom!  Mom!" I shouted, as the glass reached the half full mark where she would have stopped pouring anyway.
"What honey?" she asked me, clearly perplexed at why I was shouting her name.
"I was telling you it was full," I explained, as if she were stupid "Wen taught me how to do that today!  She said to say Wen when it was full, but your name is Mom!"
I remember her laughing and feeling so confused. 
What a fabulous memory!  That was brought to mind yesterday when I heard a song entitled "Say When."  If we follow the theory in my childhood mind of saying the name of a the person when you have reached the limit, then I nearly shouted "Cancer" this week. 
It was a challenging week indeed.
Willie was feeling much better last Sunday and we had every intention of leaving the hospital that day.  Some of the doctors and nurses had lead us to believe that all he needed in order to go home was to be fever free for 12 hours.  By Sunday morning he had been clear for nearly 24 hours and we were ready to go.  He was starting to feel sick from the amount of antibiotics they were giving him and he wanted no more of it.  When the nurse came in that morning to give him another IV of antibiotics he told her he wouldn't take it until he talked to the doctor.
She was a cute little nurse of Asian decent and responded to Will's request as if he had threatened her personally.  She removed all of his IV bags and worked on getting the Dr to see as as soon as possible. 
The Dr. came in about an hour later.  She said she was happy with Will's stats and felt we could go home that day.  She was not the oncologist; however, and reminded us that she would have to defer to whatever Dr. Talebi decided. 
We were hopeful we would get out of there and waited for Talebi to show up.  He came in around noon and examined Willie.
"You look good," he reported, after listening to Will's lungs.
"But you are still in a fragile state" he continued "you have to realize that you could be dead in an hour."
It was a heavy thing to say.  His words hung in the air as we considered the reality of his statement.  I don't remember a doctor ever being this blunt with us. 
But we needed to hear it. 
"I can't let you out of this hospital until I'm certain the bacteria is gone." He continued "we will draw some blood today and see if any bacteria grows in it over the next 48 hours."
"That means we have to stay until Tuesday!" I said, defensively.
"If the cultures are clear, then yes, you can leave Tuesday." He didn't seemed phased by my outburst.  I suppose it is his job to keep Willie alive and not to accommodate our schedule.  For that, I am grateful.
He left the room and the silence that fell in his wake was too heavy.  His words kept playing over and over in my head like a broken record.  My husband could be dead in an hour. 
60 minutes.
We have become too casual with cancer.  It has become a part of our lives that we tolerate, but don't give much respect to anymore.  His words were a reminder that we are not in control.  Willie was really lucky to beat this last infection quickly, but there's no telling if he will be able to do that every time.  This round in the hospital introduced me to the speed at which infections can ravage a body with cancer.  It's not anything to toy with.
We waited out the next two days with little patience. 
On Tuesday morning the female doctor came in to report that his blood cultures were clear and we could go home.  That happened around 9 AM and we got out of there by 1PM.  By hospital standards, that was quick!
On Friday we went back to Stanford to see Dr. Medeiros.  We met with the Fellow MD first who we remembered seeing when Willie was staying at the hospital.  His name is Brian and he looks more like a guy who would come to install your cable than a doctor who will cure your cancer.  He has a relaxed way of talking that puts you at ease and makes you feel like you understand the complexities of cancer.
We caught him up on the events on the previous week and he took down some notes.  He wasn't surprised by the infections Willie had caught and said that it's inevitable to catch something while going through chemotherapy.  We asked him how we could have prevented it from happening or what we did wrong.
"Everyone is bound to get an infection at some point during chemo treatments," he explained "the last thing you need to do is blame yourself or try to pinpoint what caused the infection. It's just something that happens."
That was a relief to hear.  I had been feeling a lot of guilt about what Willie or I had done or not done to lead to his terrible infection.  Now we know it was bound to happen.
Brian took his notes and went to consult with Dr. Medeiros and returned about 20 minutes later with the dr.
He was looking suave as usual with a new silver earring in his left ear.  His hair looked darker and the coloring on his scalp suggested he had recently colored it.
"How are you my friend?" he said, as he extended his hand to Willie.
We shook hands with him and he sat back comfortably in the chair as if he were having a chat with some buddies.  I suddenly realized he has become our friend. 
Our arrogant, attractive, well dressed, too smart for his own good, best cancer doctor in the whole world-friend.
He was pleased at how well Will is doing considering the infection of last week.  He reported that they haven't heard anything about finding a match for the transplant so we will continue on with Chemo.  They wanted us to start the following Monday, but we immediately protested that.  There is no way we could get things in order with the shop and finding housing for our stay in just 3 days time.  They agreed to push the treatments back a week and we are now going back the week of the 20th for his next treatment.
"How can we avoid him getting an infection this next round?" I asked Medieros as our visit neared an end.
"You can't" he said bluntly "Unfortunately, these things happen. You just need to do what you did and get him to a hospital if that happens again."
That was the message he left us with.
Medeiros and Brian decided that Will's picc line should be removed in case there is any bacteria in it from his infection.  They sent us upstairs where a nurse removed the line.  It was a ridiculously easy process.  The nurse clipped the stitch that holds the picc line in and pulled the line out. 
I was in awe as I watched the line come out.  It just kept coming! 
Willie said he felt nothing, but he was shocked at how long the line was.  It was close to 2 feet long!
He is now picc line-less and gets to enjoy a week of freedom from the dangling line.  We go back to Stanford on Friday to have a new line placed then start the next round of Chemo the following Monday. 
Please keep the prayers and good thoughts coming for this next round of chemo.  We will certainly be more cautious and hope that he can walk through this round without any infections.  We are so grateful he was able to kick this last infection quickly.  That was a blessing.  We are also grateful that the Olympics have been keeping us distracted and occupied during these past three weeks.  It's as if they were timed to fit our schedule!
Happy weekend to all.  I hope our local friends are staying cool in this 113 degree weather and that the rest of you not in this kind of heat are appreciating anything cooler!

113 degrees in my car!  Yikes!