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Today I woke up calm.  Dan was already gone to work. He must have snuck out quietly.  I didn’t hear him leave.  I lay there for a while wondering and planning what it will be like to loose my leg.  How will I get around inside my motorhome.  It’s not wide enough for a wheelchair.  I refuse to give up this lifestyle and move back into a permanent dwelling.  I never intended to live in an RV forever.  It was just for the summer while Dan finishes his job and we move to Texas.  But having to HAVE to move back into a house because you can’t manage is not acceptable.  I have never done well with the word “NO”.  We can’t afford a bigger, wider, rig like a toy hauler with a ramp (made to haul four wheelers and motorcycles, Toy haulers have a garage like backdoor that folds out into a ramp).  We barely afforded this twenty year old model.  But it is ours and it’s paid for.

I guess I should explain.  As I mentioned yesterday, Dr E wants me to see an expert that specializes in removal of sarcomas.  He feels like the best way to treat a sarcoma is to cut it out - at any cost.  He said that the cost must be weighed against survival.

“Are you saying I could loose my leg?”

“You want to live don’t you?”

It seems there is some controversy over whether to treat this with radiation and chemo to try to shrink it before resection or just trying to remove the tumor and surrounding muscle.  Or possibly the whole leg.  He said he has much respect for and values the skill of Dr K, but Dr K had not expected what he found when he went in the first time.  This new expert surgeon might be able to remove it with less loss of use or he might call total loss of the limb the prudent course of action.   There is also a medical oncologist in the group that may know exactly what combination of cocktails and radiation to shrink the remaining growth first.   Although I can’t believe we have to continue waiting for answers and action while this thing continues to grow, I am thankful that Dr E was honest enough to admit that he wasn’t qualified to make these decisions.  If OHSU wasn’t right here across town, would he, or some other oncologist, just plod on drastically, claiming they knew what to do?

The problem is that I don’t have insurance and Dr E said that it is now hard to get into the University as a “self-pay”. The one thing that is to my advantage is that the type of tumor I have is so rare that the only man that can treat it is there.  So they have to let me in.  They will work two ways to get me scheduled. Dr E will email directly to the surgeon with a plea through the back door to get me in ASAP and the scheduling department will work through the main door to get any appointment available- even if it’s months out. “Once in the system,”  we were calmed with, “getting any appointment, we can push to move up the visit.”  Ok, that’s scary.  We can’t wait months while this thing gets bigger every minute.

We left the center empty handed. No party hats or invitations to a laser light show.  No appointed cocktail hour.  We got into our car scared and angry. Dan hadn’t let me see him cry yet, but his eyes were glassy and he could no longer hide his fear from me.  “We are not going to wait, Treese. We are going to find out who is the BEST sarcoma specialist in the country!  I don’t care if we have to go to Huston or New York or wherever!” God Love the man!

As Dan was railing at the wind, I called Anita.  There was plenty of people that were waiting for word of the oncologist, but the only one I felt could handle the raw emotion I was feeling just then was my big sister.  She was as shocked and angry and scared as we were.  She took up the rant that my dear husband was still muttering.  “Whatever it takes, Treese, we will find the best!  I will drive my motorhome out there and park right next to you!  I will take care of the kids.  You don’t have to worry about them.  We’ll go to the Mayo Clinic . . .”  Then Kelli beeped in.  Pull it in, now.  Calmly and slowly, I told her we were going to an expert at OHSU.  We might have to make some hard decisions, I may have to learn how to walk again.  I know that she is an adult now, but I still couldn’t help trying to protect her.

“I’m gonna be alright.  I’m gonna be different, but I am gonna be alright.  It’s gonna get worse before it gets better though.”

“Mom? Is this serious?”

“Ya baby, it’s serious.”

That was the moment it sunk in for her.

I am telling you this while I am hiding in the tiny bathroom of the RV.  I began writing this out on the porch, but when I started to cry, I didn’t want the neighbors to see.  More importantly, I don’t want my little children to see me cry.  Although I believe it is important to be as honest as they can handle, I don’t want them to see me cry.  They are like sponges.  If they see me calm and confident, they will be calm too.  If they see me sweat,  they will get scared.  More scared than they already are.  And that is too much already.  And you know what? These kids keep me going.  I can’t just wallow in this.  I have to gut it up and move along.  I have to have courage.  For them.  And because of them.

So, I am gonna take a break from this writing and clean myself up (inside and out).  And I think I will put on some mascara when I am through. No one ever puts on mascara if they think it’s a possibility they might cry.  So when you put on mascara, your mindset changes.

Yah, a bit of mascara will do the trick.

Twenty to Three and still no call.

I walked around the park making calls to update everyone and making sure I was where my cell would work if the call came in.  That not making the pot boil, I started cleaning the motorhome.  It needed it.  It’s pretty quiet around here today.  Not many kids staying here at the moment.  I had to kick my kids out with a bribe of ice cream money.  They love to buy candy from the camp store and ice cream is even more fun!  I remember the camp store in the campground we went to every year as a child.  Sandercock’s Camp on Rice Lake in Ontario.  We lived in Ohio and once every summer made the trip up and across the big river to the land of the kanooks.  It was the same camp my father went to as a child.  I can still smell the fish house- a mix of stench and bleach.  I can still feel the cold clear water of the creek coming out of the hills.   I loved to play in that creek.  And I can still see the candy racks I used to ogle over in the camp store.  I will never forget it.  I hope my kid’s memories of this camp will be as wonderful as my childhood thoughts.  I want them to remember the candy and ice cream from the camp store and not the endless waiting in doctors offices and hospital waiting rooms.  I hope they don’t remember the fear I sometimes see in their eyes.

I think I’m going to teach them to macramé this afternoon.  Everyone needs to know how to macramé!

Four twenty-five and still no call.

Five twenty-five.  Maybe tomorrow.