www.cancermonster.net

7:30a

I am so glad I didn’t wake up in a tent like so many here in the park did this morning.  The rain is just hard enough to splatter noisily on the awning above my porch.  It’s not all that cold of a rain, but it is drenching those running for the bathhouse for their morning visit.  I don’t understand tenters in Oregon.  The rain can come at a drop of God’s hat.  There is no guarantee of dry ground here.  They are either crazy, or have been in Oregon long enough to think the rain is just part of the experience.  Either way, I call it crazy.

The mist is covering the hillside across the river.  So much so that one might be tricked into believing the land flat from the water on. What a surprise it would be to run smack into the invisible mountain behind the cloud.   I can relate to that.  I have run smack into a hidden mountain myself.  Now I have to climb over it, as blind to what is on the other side as the deceived traveler in the mist.

Today, we go to OHSU to see the wizard of all Wizards.   The Wizard of “OHS”-u.  Where the heck is the yellow brick road?

Dan has gone to the job site to plan the day for his helper.   He needs to drive his work van up to Portland this time to pick up supplies for the job. I get to drive with the kids on my own. He said I don’t have to go as early as he does, but I am afraid I might get lost in a poppy field with the Wicked Witch of the Northwest on my heels.

I lost my sense of direction when the Fibromyalgia invaded my life.  Now that I have gained a sense of purpose, you would think a sense of direction would come along.  But it hasn’t.   I guess you have to pay extra for that.  Now I go where I am directed, hopefully with someone else driving, and get out when I get there.  It is actually much simpler this way.

I wonder how the FibroCreature is going to react to being usurped in importance by the CancerMonster?  So far, I can’t tell.  Everything is getting blamed on the new foe and the old one is coasting along in his wake.  Once the CancerMonster is eradicated, the Fibro Guy might begin to howl.  Not my problem today.

Ok, the rain is now cold.  I guess I should go inside to get warm and ready for the trip to Portland.

***************

9:00a

The sleepy children have voted to leave later and not follow Dad.  They have faith in my navigational skills.  That and the fact that they move slowly in the morning.

Yesterday on the way to the library,  I  called the salon where I have had my hair cut by the same hairdresser for the last couple years, to see if Tracy would be able to fit me in while I was up there.

“Tracy no longer works here.”

WHAT?

It is a woman’s nightmare to have their hairdresser up and move on them.  “How about we give you a 20% discount to see someone else here?”  “How about I pay you the 20% to tell me where Tracy is working now?”  No deal.  Rats.

“Hey Tracy, formally from U.T. & B.?  If your reading this send me an email! I haven’t moved to Texas yet!”

While grumbling over the disappearance of my beloved Tracy, I learned one thing I had set out to do had been done.  “Why do you need a haircut?  It’s all gonna fall out anyway!” said a smart-alec girl’s voice in the back seat.   Then the other one piped in with “Yeah, spend that money on me.  I need a haircut and my hair’s not gonna fall out.”  Not to be outdone, the boy exclaimed, “Spend the money on ME!  Buy me some candy!”

See, many times in the past month, I have joked about my hair falling out and me getting a blonde wig.  The joke’s intent was to make the day it does fall out less scary for the kids (and me).   Now I know they expect to see me bald.  They are all prepare for it.   Wonder if I am?

Dan has come and gone but the rain hasn’t.  I shouldn’t be surprised.  It is Oregon after all. But it has been raining most of the last couple days.  That is not usual for this time of year.   Of course, I haven’t lived on the coast before. So maybe it is normal here.  I don’t know.

Normal.  Wonder what it’s like to be normal?  A normal person would get a normal cancer.   I have been called a lot of things in my life, but normal was never mentioned in my direction.  Why would I start being Normal now?

Not only do I have an abnormal cancer, I have it at an abnormal age and in an abnormal spot.

Sometimes abnormal is the norm.

Yes, yes. I am rambling all over the place this morning.  It keeps my mind off of what this magical Dr H will most likely tell me this afternoon.  As soon as he tells me, I will tell you.

Just don’t tell me that I can’t live in a campground in an RV.   I like it here too much.

******************

7:40p

We are on our way back to the beach from the Emerald City.  Although we received some answers, others are still missing.  I’m in the parking lot at Home Depot waiting for Dan to come out.  The kids are settled in the back seat with a movie on the laptop.  We’re all fried.  Since we drove two cars, I have to drive myself back to the beach.  That’s why I’m waiting for Dan.  I just want to follow the back of his work van instead of thinking about which way to turn.

I know you must be anxious to here the news, but it will have to wait until tomorrow.  Today is done but for the final curtain close.  And that is a two and a half hour drive away.

I was just talking to the sweet lady next door.  She and her husband had been looking for a piece of property, but they changed their mind.  They are moving from their older motorhome like ours into a brand new coach instead.  Thirty-nine footer with pop-outs.  I am so happy for them.  I’m a bit envious.  But. . . not overly much.  That big rig comes with a big payment.  We’ve made our motorhome work for us. Not that six more feet and a wide body wouldn’t come in handy.  We are making every inch of our 33′ x 8′ count.  We almost have a place for everything now.  The garbage can is a problem still.  And the printer doesn’t have a great home yet.  But it works for us.  Had we not been such new-bees we would have saw through the claim that all the leaks had been fixed.  All the leaks have not been fixed.  The leak in the wall next to my bed has not been fixed.

We need all new tires and a tune up.  And all new latches on the cabinets.  New walls inside and a new skin on the outside.  Haha.  Nothing like the neighbors getting a new coach to point out all the flaws in our own.

But it’s home.  I didn’t expect to love this life style as much as I do.  Like I said before, there is a freedom to living in an RV.   We came close to buying a 40′ bus conversion. Ten feet wide and seven feet longer than this one though, was a scary thought to drive when you are first learning how.  I wish we had done it now.  It was cheaper than this one and had not been fully remodeled yet.  Maybe we will go that route next time.

We may have to rent an apartment for a while.  Because of me.  That stinks.  But I hate to be told I can’t do something.  So I’ll figure out how to make this work. Besides, it will cost us more to live in  an apartment.

Hope for the best and prepare for the worse.

If it were just Dan and I to plan for it would be easier.  The kids have to be enrolled in school in September somewhere.  I homeschooled them the last six weeks of the last term, but I won’t be able to do that this fall.  And as soon as I can leave the doctors here, I want to continue on south. The main reason we planned to move south was my Fibromyalgia.  It’s just too damp here in Oregon and in the winter it’s dark.  Sometimes it doesn’t stop raining for days or even weeks in the winter.  There is not as much snow here as one might think.  Snow I can handle.  It’s the dark rain that gets into my bones and makes me ache.

Speaking of sunshine, the sun just made its first  appearance of the day.  It drizzled all night.  Summer rains are nice though.  They wash the air and your attitude at the same time.  My attitude needed a wash too.

Anita just called me.  I thank the Lord for my big sister.  She is a pillar of strength for me now.  She also has Fibromyalgia and lives between her motorhome and her park model.  They have been living this lifestyle for more than twenty years.   Sometimes with a house to return to and sometimes not.  If the doctors decide to operate right away, she and her husband will start the drive out here from Florida.  As much as I want her here, I feel guilty for that too.  This was not in their plans either.  It will be at considerable cost to them to come out here.

I feel guilty for getting cancer.

There is no one to blame, not even myself for this cancer.  The cause is unknown to the experts.  I know this, but it doesn’t dissuade my feeling of guilt.  If it were Anita’s cancer, I would be there as fast as my legs could travel.   I would.  And she knows it.   It would drive her crazy not being here.  If she is gonna be driven somewhere it might as well be to Oregon.

I have spent the last few hours doing research on Sarcoma treatment online.  What a wonderful advancement the internet is.  I wonder if the doctors agree though.  Patients like myself are able to do their own homework, not just trusting the word of their doctor.  I have found that the main course of action for sarcoma treatment in the past was amputation.  With the advancement of medical technology, that extreme “removal at all cost” methodology can be a last resort instead of a first step. I am going to hang on to that thought until someone tells me otherwise.

Tomorrow someone is going to tell me something!  I tell you.  I will make sure of it.

Tomorrow is my appointment with Dr H and the sarcoma team at OHSU.

Tomorrow I want an invitation to SOME kind of party.

6:00p

I did try to take it easy today.  We didn’t make it to the library.  I read a lot and did the dishes.  Just waiting.

Dan came home with the mail in hand.  In the stack was the hospital bill.  I shouldn’t have looked at it but I couldn’t help myself.  At the bottom of the fifth page next to the “pay this amount” box was $17,309.  I started to cry. Right there in front of my kids for the first time since this all started I cried.  I couldn’t help it.  This is going to bankrupt us.  The treatment hasn’t even started.  There is at least one major surgery coming.  There will be rehab no matter what the outcome of that will be.  Dripping cocktails and laser light shows. Wheelchairs and maybe prosthetics.  It was too much for that one moment of realization to hold.  It’s one thing to have this happen to me, but what it’s going to do to my family. My husband is just your average working Joe.  If I don’t survive this he will still be bankrupt with three little kids to raise.  I just sat there and cried.  Finally I got up and ran to the back of the motorhome and pulled the divider closed.  It’s hard to weep silently.  I left Dan to explain to the kids and I felt guilty for that too.  It’s too much.  It’s too much.

When Dan came in, he held me and told me not to worry about it. “It doesn’t matter Treese, let all the bills come.  We’ll figure it out later.”

I shop at Goodwill and the Grocery Outlet and used book stores.  Target and Wal-Mart and Costco. One thing my mother taught me was how to buy a lot for a little.   I don’t know how to look at a seventeen thousand dollar bill and not worry.

Not today and not tomorrow either.

I woke up on the hick side of my family tree this morning. Ah Doown’t quite know a’wheer it’a came from . . . the characters in my current book are English and Irish. Either I was a’dreamin about some’un named Billy-Bob or some’un in the park is a red-neck and I picked it up. I have such a bad time with picking someone else’s accent up. I didn’t realize that I was letting my southern drawl out until Dan called me on it.

“Hey dare Darlin’, looks a’like ah went ahead and did it after all. Ya said you’d never a’do it, but ah made ya my Queen! You are ma Queen of the double wide trailer!”

“Ah day’am. So ya di’ad. This‘un ain‘t evn a dubba wide!”

My father’s family is Hungarian, but ma Momma’s family came from West Virginia. They were real “hill-billies.” Although I was born in Ohio, I spent my formative years in Florida. Florida is populated by a diverse group of people. Spanish extended families, and transplanted retirees from northern states. Beach bums and red-necks. Most of the good-ol’-boys live in central Florida (I still have kin in central Florida) but the red-necks filtered into the southwest coast where I grew up. One of my brothers is a red-neck, though he has been city-fied pretty good. The other brother still lives on the island where we lived when I was a teenager. He kinda talks “beach” even now at 46. My oldest sister escaped our southern heritage since she was an adult already when we moved to the south. She doesn’t have an accent, yet she listens to country music. She cringes when a relative calls her by her hill-billy name (you know, when you get your first and middle name called in one breath. I won’t tell you what her hill-billy name is for fear she will a’disown me fer it.) My other sister . . . has no accent at all come to think of it. Neither does my mother who gave us the dern country genes!

My own accent changes with my surroundings. When I am with Spanish speaking friends Mi nombre es Ta’ressa. When I was studying and teaching TaeKwon Do, people actually asked me if I was Korean. “Do I look Korean?” I spent some time on an Native American Reservation and offended a bunch of Seminoles who thought I was trying to be more native than I had a right to be. (I can’t do that accent anymore. I just can’t hear it in my head now. Strange.)

Even reading books with strong dialects woven into the story line will get me. I was into Middle Ages novels full of Kings and Queens, Knights and Wenches, and for months on end I was speaking five hundred year old Queen’s English. Dan made me swear I would change eras or he was going to stop talking to me all together.

Last year, I was involved in a Diana Gabaldon Outlander online group and I could’na help but speak wit da brrrouge of the heather covered hill people of Scotland, ya ken.

English or Pakistani. Boston to New York to Alabama I pick it up.

The west coast now, these people have no accent. Unless you count “coffee” as dialect. I just can’t wrap my brain around that one yet. “Just give me a dern cup of coffee . . . Regular old coffee. Anything with Juan Valdez on the label will do.” I get a lot of blank stares from the Baristas for ordering plain coffee. They don’t know how to make plain coffee. And why is there a special title for coffee clerks anyway? The grocery check out girls or the poor blokes at McDonald’s don’t get a fancy title. (Well, some times I do call them a name, but I wouldn’t call it a title. Hehe)

But I digress.

It’s a rainy, hazy day today. It actually feels good. It’s been quite dry and warm lately. Yesterday’s temperature was a perfect 72. It might be 50 this morning. July 15 and I have a jacket on. That’s Oregon.

After breakfast, Dan stood up too fast and got dizzy. He’s under so much stress. Men want to control things. They need to be able to fix what is broken and pay someone else to do it when they can’t fix it themselves. He can’t do any of that thanks to this Monster inside me. And all we really know is that within a week, our whole lives will change. Whether they are able to save my leg or not, I’m going to have a long road to recovery. I will recover. And I have promised myself and Dan that I will never be helpless no matter what happens tomorrow. Easy to say now. Here I am -I’m not sick. I’m sore from the surgery sure. But I am not sick. Within the week, I could be sick. I could be crippled. I could have only one leg. It’s almost too much to imagine. It’s someone else’s bad dream. It’s a episode for Discovery Health Channel that you watch on Sunday afternoon because there is nothing else on. This isn’t really happening to US.

But it is.

See, this is why I have been rambling on about so many weird subjects. I am trying to fill my mind with anything other than what is ahead. Yes, I know I am breaking my tomorrow rule. But my tomorrow is scary. Please forgive me if I, instead look to next month for a few days.

It’s night now. After “quiet time” in the park. I am beat. This afternoon while Dan went off to the laundro-mat with the kids, I was told to go be alone somewhere and relax. I headed to the bookstore. Some would have gone to the casino -and in fact my dear hubby told me to do just that. He said I could drop a few bucks in the machine and chill. I instead dropped my money in the hands of the bookstore clerk. Much better odds. I want to make sure I had enough Foster books to get me through the next few weeks. I found a great used book store in Lincoln. From the outside, one would never believe what is inside. The rooms of books go on and on. When you think you have reached the last space, there lies another room ahead. They have a great Sci-fi collection. (Meaning they always have a good selection of Fosters.) I love this store. Today I realized there isn’t enough room between the isles and piles of books for a wheelchair. Foot. Story of my life. No pun intended. I went to another book store and had to use a ladder to reach the top shelves. No more ladders for a while either. The other night, I told Dan we should go dancing. “We haven’t been in a long time.” We’ll have to figure out a new way to dance.

There has been pain in my leg for the last few days. My calf is tingly and the back of my knee hurts. Every so often lightning shoots through my thigh. At first I thought it might be Fibromyalgia pain, but its consistency tells me otherwise. Fibro pain comes and goes. It moves from one spot to another with no pattern. This is different. It is possible that the fluid built up in the cavity left by the removal of the large tumor is pressing on nerves. But I don’t think so. My sister tells me to call “the doctor” but I don’t know who to call at the moment. Dr K? He is in Portland during the week. The oncologist that I saw only once? Or the Sarcoma team at OHSU that I haven’t even seen yet? Can it wait until Wednesday? And will they aspirate the area for me when I do get there? This waiting is getting to me- literally.

Maybe tomorrow I can take it easy and the swelling will go down. But tomorrow I need to take the kids to the library. Life continues irregardless of Monster fights. First, I am a mother. Then I will be a patient. Tomorrow.

I let the morning kind’a slip around me. It was 9:00 before I made it to my chair on the porch with my first cup of coffee and my book. That’s one obsession that I haven’t told you about. Saying I love to read is not quite accurate. I have to read. I am currently working my way through the obscenely long list of Alan Dean Foster. Don’t recognize his name? Don’t feel bad. Most people don’t. Foster mainly writes Sci-Fi and along with his own work, has done the novelization of many movies that you would recognize. Like Aliens and Dinatopia and The Chronicles of Riddick. Foster gets the scripts at the same time the director does. He makes a book, the director makes a movie. IMHO, Foster does a better job. His Transformer novelization is due out soon.

He even did the first Star Wars book: Star Wars -From the tales of Luke Skywalker. George Lucas put his name to it, but years later admitted that Foster actually ghost wrote it.  I finally found a copy with Lucas’ name on the cover last week at a used bookstore for $2.50. First edition. When I explained it to the owner, she inhaled sharply as she took my little piddles for it! Haha. I don’t know if it’s worth more than that, but it was fun to see the wonder on her face.

My favorite Fosters are the Commonwealth Novels with Pip and Flinx. If you like Sci-Fi, find For the Love of Mother Not and you too will be hooked. I have read over 35 Foster books and have that many more to go. I have this bad habit of reading every thing an author wrote before moving on. It drives my husband crazy when I have to order some obscure piece written in 1976 off the internet because I can’t get it anywhere in town. I love Sci-Fi, I think, because it is about TOMORROW. Tomorrow, tomorrow. See my obsession with tomorrow goes beyond today. I could have worse hang-ups. I sneak my books in the house like an addict hiding his stash. My husband and I both pretend that he doesn’t notice.

Books have always been my escape from reality. Whatever works.
*******************
The park is packed this weekend. I am far from the Tribes now that we have moved to the middle of the park. Now I get to view the “Generals.” The typical General arrives in a coach that cost more than the average American’s home. Tagging along behind this 45′ motorized mansion is a matching car. Matching down to the sweeping graphics that jump off the coach to land across the dingy in tow. His monthly payment for his land yacht and dingy is more than what we paid for our motorhome.

The General’s troop of two (his wife and the dog) stands off to the side while he argues with the camp staff over the placement of his ship. In the last two and a half months, I have watched J park hundreds of motorhomes, 5th wheels, trailers, campers and tents; some in spots no one could believe would fit. He is a master at spatial manipulation as well as manipulation of the Generals. J has the patience of Job. He never shows his frustration with those who don’t trust his judgment. J could park a forty foot 5th wheel in his sleep. And sometimes I think he must be asleep when I hear his four wheeler cruising past at midnight and beyond. I sometimes just sit here on my porch and giggle at him.

“It’ll fit. Bring her back. That’s it. No your gonna’ miss the tree. Don’t worry about your pop-outs. There is an opening between the poles. There you go. Doin’ great. Lookin’ good. Perfect. There ya go.”

If it was my job I would say, “Listen you idiot! Do what I tell ya or go on down the road! Your rig is not that special and you don’t need to pop out beyond twenty freaking feet anyway! My motorhome is eight feet wide and I have three dern kids in there besides my husband and me. And further more, get here before four in the morning next time and you might get a better spot!”

It’s not my job. Haha

I’m just happy to be here watching it all from my porch.

I could be doing the laundry. I don’t have to do the laundry anymore. Since my surgery (you know where he went in looking for a splinter and pulled out a sarcoma instead. Kind of like “Little Jack Horner” he stuck in his thumb and pulled out a plum…) anyway, since my surgery I haven’t had to do the laundry. I guess membership Does have it’s privileges after all.

“If you get cancer in your butt cheek, you don’t have to do the laundry.”

Hey, it’s a rule.

I think I’ll go for a walk while I still can.

I need to make some money to pay for the stack of bills already piling up. I have to. I am going to sell t-shirts and tote bags. I don’t know how much that will help, but my poor husband is stressing over money while swearing to do everything possible to get me healed. He’s scared. He doesn’t want me to know it, but he is. He has to keep working, but he wants to be with me. He has already missed days driving me back and forth to appointments and the real treatment hasn’t even begun. If I have to stay in Portland, it will cost $1,300 for a month of daycare for the three kids. If I have to stay in the hospital for a while… This wasn’t in “the plan” for the summer. It’s just not a good time for this.
There isn’t a “good time” to have cancer.

I have to make some money. Maybe some hats and coffee mugs too? I have the design ready now to upload to cafe press. Anyone can have a free store, design their own artwork and Cafe Press will take care of everything.

I have to pay for gas and food and a place to park the motorhome. And babysitters. And Cancer treatments. And surgeries and tests. And laser light shows with dripping cocktails.

Why don’t we have insurance? Well, that’s my fault too. For the last six, almost seven years I have been struggling with one health issue after another. I am now “un-insurable”. With the cancer, now I will never find an insurance company to cover me. My husband is self-employed. This is a problem many in the construction field face.

Maybe tomorrow’s tomorrow will find a cure not only for cancer, but for insurance as well.

Anything’s possible tomorrow.

Uh oh.  Friday the 13th!  Nah, my luck can’t get any worse than it’s been.

Another beautiful day in the neighborhood.  I have some new blueberry creamer in my coffee.  Here in the Pacific Northwest,  coffee is as important as water.  We are in the land of Starbucks and Java Joe.   There are even coffee shops in the high schools!  Get’em when they’re young.   After five years here, I still haven’t memorized the lingo.  Grande half-caf mocha frappa-cappa what?   Dan is worse than I am.  “Order me that thing I had last time?”  “I wasn’t with you last time!” “You know what I want.”  “He’ll have a ‘caffa-laffa oompa-loompa’.”  No, that wasn’t it.

Now Kelli, she is bilingual. She can speak “coffee” like a native.  When the rest of the country’s teens were hanging out at the Pizza Palace, she was at Starbucks with her gang of caffinated  characters.  Thin and wired and oh, so sophisticated.  “What do you do there ’till midnight?”  “Oh, mom!  How much trouble can one get into at a coffeehouse?”

I don’t know.  But there must be something.  One of these days, some government sponsored study is going to link the early digestion of caffeine to something.  Who knows, maybe world peace.

Maybe tomorrow.

Tomorrow is another dimension.  We are always striving to get there and never arrive.  By the time you near it, it’s today already.  So you set your sites on the next tomorrow and plod on.  “Tomorrow” is a powerful word.   Tomorrow implies survival of today.  “I’ll see you Tomorrow” means that you plan to continue, see?  If you stop looking towards tomorrow, you stop living today.

“Live each day like there is no tomorrow.”

NO!

“Live each day like tomorrow will be better!”

Everyone needs something to look forward to that is greater than the view you look back on.  Tomorrow is the key.  Look to Tomorrow.  Plan for tomorrow.  Live today getting ready for tomorrow.

People take tomorrow for granted.  Until their today gets complicated by something like a Monster Fight.

There is this little game I found online called Rush Hour.  You have to move the cars around this garage trying to get the pink car out the exit.  Some cars are parked vertically and some are horizontal.  Each car can only move straight back and forth along the line they are in -not side to side.  That’s the puzzle.  No three-point-turn-around here. No crane arm available to move them out of the way.  I have made it through nine levels.  Stuck here on level 10 Expert.  Story of my life here in this little java script.  I am the pink car.  Why don’t the blocking punks get out of my way.  I am experiencing a bit of “road rage” here!  I refuse to give up so I keep tying up this guys bandwidth with my open page. Sorry buddy, but I’m on a mission.  There has to be a way out of this.

There has to be a way out of this.

******************

It’s a bit after 8p and Dan and I are out on the dock looking for the perfect photo shot of our perfect park.  The water is glass except for the rings caused by the fishermen’s casts.  The reflection in the water is nearly an exact copy of the world above with but the barest shimmer obscuring the fine lines.  That’s where my life is now. In the reflection.  Just a bit shaky. Just a bit surreal.  Just a bit out of focus.

There is a seal swimming out there in the middle of the river.  Sometimes his head is just above the water and he is treading along with the current. Then he disappears.  Is he drowning? No of course not.  He’s just doing what it takes to survive

I am trying to do the same thing.

Maybe tomorrow I will ask the seal how he does it.

Day 27
Thursday, July 12th, 2007

Good morning sunshine.

It’s not yet 9:00a and the sun is bright.  The birds are chirping.  It’s very peaceful here on my porch.  The neighbor calls out “You’ll hear today!” as she walks past on her regular route with her dog on a leash.  She is a sweet woman.  She and her husband are from Alaska.  This is their third year full time in their RV. Her husband works construction just like mine.  Most of the full time people here in the park are in town working on some kind of job.

There are no “tribes” here at the moment.  The children around are mostly well behaved and quiet. That’s good and bad.  It makes for a more peaceful morning, but it makes my three the loudest in the bunch.  J (the caretaker here in the park) says that my kids are pretty good mostly, but I still push them hard to follow the rules.  Those of you that are mothers can relate.  When a child misbehaves, it’s a reflection of the mother.  No one says, “Look at that kid! Where is his father?”. No, it’s the mother’s fault.  Kids need their mothers, if for no other reason than to have someone to blame for their behavior.

Kids need their mothers

There is that little thought again.  No matter how far away I try to keep from that thought, it sneaks around the back and slips in there.

My kids need their mother.

Period. End of discussion.

I hear them moving around inside.  At 41, I could be done with kids.  Sometimes I think I am too old to have young ones about.  There should be a law keeping middle aged women one hundred feet from any small child!  Lol.   At first people think that Dan is not Kelli’s father since there is such a difference in her age and the little ones.  They assume that Kelli must be from a different marriage.  And in fact, she is from a different marriage.  But Dan is her father.  Dan and I separated and divorced not long after she was born.  We were apart for nearly eight years.  The first half of that we spent fighting in court.  Then we became friends.  We weren’t friends before we married.  I know that sounds odd, but it is a mistake that many couples make.  We dated for only three months before we got engaged and were married three months later.  We had Kel right away.  We never really had a chance to get to know each other well enough to be friends.  When it got hard we ran.  Then somehow it was always Dan that bailed me out of tight spots.  He was sympathetic when I broke up with this bloke or that.  I even married someone else.  That didn’t last long.  And Dan was there to pick up the pieces.  When I joined Amway with Joe and Brenda, Dan got in my downline.  When I joined a church, Dan did too.  I moved in with my mother.  When Dan would drop Kelli off my mom would say, “Dan, did you eat?” and another place would be set.  He was like the old bad penny that kept bouncing back!  Haha.  Or a good friend.

I would regularly say “Dan, we are not getting back together.”  “Of course we aren’t. Who said anything of the sort?”  But, you know, every once and a while, Hell does freeze over!  It was an argument out of no where between my mother and me that did it.  I needed to find a new place to stay quickly.  I picked up the phone without thinking and called Dan.  “Come right over.  You can stay here until you find something else.”

I never found something else.  We were remarried on our tenth anniversary.  And had the three little ones within a couple years.  That has been ten years ago.

The difference this time?  We made a promise. “Nobody Leaves.”  When it gets hard, we work it out.  We never threaten to walk out.  We never throw the past up in a fight.  We are each other’s best friend.  That is the difference.  ‘Till death do us part.  We hold hands and kiss in front of the kids.  They groan and hoot, but I know that they smile when they think we aren’t looking.  I try not to cut him down in his kids eyes.  And I tell my kids how much I love their father.  I don’t complain about him to my family or his - even when I am so mad at him.  He is a good father and my “split-apart”.  And I am so blessed to have him now.

That is the difference.

********************

It’s now 11:00a and still no call.  Time for me to get on the phone.

I called the treatment center and while I was on hold, the kind young man called OHSU.  He relayed the message that “they” were finishing up my paperwork and would call me today with an appointment for early next week.  That’ll work.  The call came a short while later.  Dr H’s assistant at OHSU let me know that the good doc will see me on Wednesday, July 18th, at 3:30. I will be listed as medically needy  (or something to that effect) instead of “self-pay”.  What ever works.  She seemed to think surgery would be planned within a week.

OK.  Surgery.  How much of a surgery?

Whatever it takes.

I then called Dr K’s office in Portland with a request to have him call me back.  He did so quickly, as always.  I felt that I was somehow being disloyal to him going to see another surgeon.  At least he needed to know from me what was going on.  And I wanted to get his opinion of the group at the university.  He said it was a good thing to go up there.  The group was well known.  He wanted to know what they planned to do.  (So do I!). I told him what the assistant said about scheduling surgery.  “I would hope they would do radiation first to shrink it.  What did Dr E say?”  I told him that I got the impression Dr E felt the best action was removal at whatever cost.   “Maybe so.”

Maybe so.

Dr K also said that he had planned to present my case to his group tomorrow.  I wonder if he will still do that.

Tomorrow, Tomorrow. . .

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.

We’re off to see the wizard. . .  To find out what kind of spell he can cast against the Monster.

The waiting is over.  The party is just starting.  The “Party Masters” will reveal the menu. Will there be cocktails or just the laser show and cookies?

I can’t even believe this is really my life.  This is someone else’s nightmare.  I changed my mind.  I don’t think I will have cancer after all.  No thank you, I’m full.

Not today, I have a headache.

Make a new plan, Stan.

Drop off the Kids, Sid, ’cause you are on your way.  Ready or not.  Here we go.

Oh, gees.  I am sitting here in the passenger seat while Dan drives, the kids in the back, and no one but you knows that all this stuff is rolling through my head.  Outside, I am calm and quiet.  Inside I am a mess.  I am on my way to a freakin’ ONCOLOGIST because I have CANCER!!   How the heck did that happen?  When did I open the door wide enough for the Monster to sneak in?

Well, I just need to cowboy-up. I only get one minute at a time to feel sorry for my self. And my minute is up for today.

****************

6:00p

Well, turns out that the wizard didn’t know what spell to cast after all.  Can you believe that we are going home with more questions and less answers than we had before we came?  This Doctor (we’ll call him Dr E) wants to defer to a group of experts in Sarcomas at OHSU. I don’t know if it was just his way, but he said some things that surprised us.  I am glad Dan was with me.

I’ll tell you about it all tomorrow. Today’s thoughts are too raw for words.

I saw Dr K yesterday.  Yes, saw a surgeon on a Sunday.  This is not your run-of-the-mill surgeon.  I really like this doctor.   Dr K comes down here every other weekend from Portland to see patients and do surgeries.  He has been very kind and supportive.  When I call him, he knows who I am.  It is a shame that knowing your patients is a special trait in a doctor.  I don’t have to jog his memory about what we last talked about.  He is not worried or bothered about me not having insurance.  He says not to worry; “We are going to take care of you.”   Not worry.  That is harder to do than to say.

So, the good doc aspirated the fluids built up in the cavity left by the removed part of the tumor.  Yucky stuff.   When asked about the delay in naming this thing, he said that the test could take up to three weeks.  They have to be sure to rule out everything else before they say for sure what it is.  He is relatively sure that it is Rhabdomyosarcoma.  “How does a 41 year old woman get Rhabdomyosarcoma?”  That is the mystery.  I asked him about radiation - is it really done everyday?  Yes. Monday through Friday.  In my case maybe six weeks.   Six weeks.  Two and a half hours away from here.  We came to this town to be together and now I will be trading places with Dan.  I am going to find child care here for the kids and find a place to stay during the week in Portland, driving back on the weekend. Kelli doesn’t have a place I could share, but Dan’s Brother and his beautiful wife have offered their home as a hostel. I don’t like the idea of imposing on them for so long, but I appreciate the love they have offered.   Dr K said that the Oncology group might be able to arrange housing for me.  That is something we will definitely ask. . .

. . .Tomorrow, when we go in for my first appointment at the cancer treatment center.

Today, I am getting all my paperwork in order.  And attempting to stay sane.  The waiting is over.  Tomorrow the party begins.  Dripping Cocktails and Laser Light Shows daily.  It will be a blast.

Yah.  OK, let’s run with that theory.