www.cancermonster.net

1:30p

I feel much better today.  I slept on a heating pad last night.  I figure sooner or later they are going to zap me with a laser so how much can heating pad hurt.  It helped.  And I slept all night.

I am still trying to get my appointment at the radiation center.   I talked just now with the same woman that I spoke with yesterday.

“Didn’t They call you?”

If I hear that question one more time . . .

“I think they are going to treat you up at the University.”

But Dr H said that the university couldn’t do the radiation.  I am so confused.   The lady on the phone said she saw an email about me that was sent back  to OHSU saying they only treat local patients.   This woman is as sweet as a southern pie.  She said she would get more info and call me back.   I called Dr H’s assistant’s line, but no one answered.  Maybe she is talking to the center.  (Like I am all anyone is talking about!  Get a grip woman!)

I am sitting on an abandoned picnic table in the back forty.  This field holds the overflow parking and boat trailers.  The cell signal is good here. And it’s a more private place to talk on the phone.  And less people see me cry.

I can’t just sit here waiting for a call while the Monster makes a new move.  How can I fight this battle without the tools to do so.  I don’t happen to have a radiation machine in the under storage bays on my motorhome people.  Help me out here!

I am the Tree.  I am the tree.  Oh God, let me be the tree.

Once more on hold with Dr H’s assistant, listening to a fine Sousa march and my cell phone beeping the dieing battery song at the same time.  It’s only 2:00 and my battery is toast.  Someone other than who I was after finally answered and said the woman I wanted was on another call. “Maybe I can help you?”  But he couldn’t.  And I couldn’t stay on hold anymore either.  My battery is dead and I am way over my minutes.  I told him I would call back after I plugged in my phone. I guess I will go on back to the motorhome and charge it up. I can always jog on back here again if the call comes.

“If the call comes.”

Story of my life.

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

4:00p

I finally got through to Dr H’s  assistant’s line only to be told by yet another kind soul that she had left her desk for the day and wouldn’t be back tomorrow either.  This one tried to help, but she couldn’t either.  She transferred me to the medical triage line to leave a message.   It’s after 4:00 now.  No one from either office called me back.

Another day has gone by. Maybe tomorrow.

Now that my phone vigil is over for the day, I finally had a minute to look around the park and see who has come to the party this week. There are several big generals with Florida tags in the park at the moment.  They all pulled in together yesterday.  What a site that was.  One tomorrow I might have one of those big pretty buses and travel in a caravan across the country.  Now that’s a different kind of Full-timing.   It’s only cheep to live in an RV if you go somewhere and stay for a while and then go somewhere else and stay for a while again. Night to night, here to there traveling is expensive.  But it sure will be fun.  This park has a sign that says everyone welcome.  And every kind of camper shows up here.  Tent to Townhouse, we get them all.   It will be hard to leave here.

I have never been much of a neighbor.   I am learning how to be friendly from the best teachers in the world.

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

7:30p

I got a call from my aunt while I was cooking dinner.

“Honey, I don’t want you to worry about the radiation!  You just relax tonight and put it out of your mind, now.  You can’t afford to stress over this tonight.  It will happen, don’t you worry!”

No “Hello, it’s Aunt Shirley”.  No introduction needed I guess.  Hahah

“You must have talked with mom.”

“Yes, I just hung up with her and had to make sure you were ok!”

I love that lady.  I hadn’t talked to her much in the past few years, but like a childhood friend, when we pick things back up it’s like not a day had gone by.

Cheered as I was by her call, I wasn’t hungry for the dinner I cooked for the family.  I sat down on my porch with my book.  A few minutes later, the phone rang.  A Portland number.  Must be Kelli.  But, No.  It was OHSU.  This was a new voice. I’ll call her D.  D said that she worked for Dr X, in OHSU’s  Radiation Oncology Department.  And wanted me to know that she was working on my case.  I looked at the clock - 7:05p.  “I never expected a call this late. I had given up for the day.”

She asked me a few questions and let me know that she would be working it out with the University to get my treatment going.  “There?”  She read me the email (I already knew about) from the other radiation center.  Being that I now live outside their community and have no insurance, they would be unable to treat me at their center.  I didn’t tell her that I already figured that out.   I did tell her that her call meant the world to me and would help me sleep better tonight.  “I wanted you to know that you are on our radar.  Dr X has reviewed your file and is familiar with Dr H’s plans.”  She is going to speak with the financial department in the morning and call me back.  An appointment with Dr X is forthcoming. AND she is going to get the ball rolling on a spot on campus for the trailer too!

I hung up the phone and cried.  This time good tears.

Good tears.

Good tears will make for a good sleep tonight.

Suddenly, I’m hungry.  How’bout that.

8:30a

Oh dear.  I just reread what I wrote on Saturday morning.  Haha.  Must have been just after I took a pain pill!  Sorry. I am reading a rather strange Foster where the pets of a slain wizard have taken human form and are traveling through Kingdoms of Light (the name of said book) -each a different color of the inside of a rainbow -searching for white light to counter the spell cast by evil goblins that has robbed the world of all color.  Seems I not only pick up accents and dialects and sayings and the common cliché, but also the fantastical imaginations of a twisted mind.   Go figure.

We spent the better part of the weekend looking at RV parks.  We still don’t have a spot reserved for September.  Everywhere we went, we couldn’t help but compare to this park.  Too trashy, too boring, too much concrete, too little concrete.  Too much money, no Wi-Fi, no room at the Inn.  There is (was at the time) two spots available for the whole month in a place down the road.  We decided we had better not wait.  So we drove over yesterday with the intention of making the reservation.  Dan had not driven through this park since the spring when he was looking to bring us down here.  It was empty then.  It’s full now. Jammed in like little pickles in a jar too small to add juice.  We drove through before stopping at the office. And we drove right on back out.  It didn’t feel right.  Have you ever had the feeling that, even though everything looks as it should, something still was amiss?  Yes, the rigs were packed in tight and there were way too many weird rules listed on the brochure, but it was clean and there were nice park like settings in places along the river.  Still, there  was something telling us that something was askew.  Does it really matter that there were no fire pits on each lot or that you couldn’t set out a rug or use outside lights?  What bothered me was that there were no children playing on the playground on a sunny Sunday afternoon.  Where there is no children, there is no life.   Like a forest with no birds singing.  It’s just not natural.

We have had parks suddenly not have space for us when they find out about the kids. Unless they take only 55 and older patrons as a rule, they can’t admit that they don’t want children in their parks. But they can make it unwelcome to those of us with children.  I read one rule list that stated “all children 16 years and younger must be accompanied by a parent at all times.” Could you imagine a sixteen year old that couldn’t go to the bathhouse without his mommy holding his hand?

There are more and more families taking to the RV road than ever before.  Sure, the great huge Generals rarely house tiny tots -who can afford those rigs and children at the same time?  But it is getting harder and harder for the average family to survive in the concrete jungle we call normal life.  Our motorhome has saved us more than $1,500 a month in rent and utilities.  It has saved us an unnumbered amount in material things we didn’t need in the first place.  I think everyone should be compelled to live one year in 33 feet of space.  Everyone should find out that they don’t need all that stuff.  I found out that I didn’t need seventeen cake pans (I really sold seventeen cake pans at our yard sale) and three bread machines (at Christmas time I like to make a huge Santa head shaped loaf of bread that requires three batches of dough I didn’t know how to kneed myself.)  Now, the 350 Santas that are still in storage I might still need.  Maybe.  Hahaha.   Maybe not.

I used to wonder how people lived in the tiny apartments (“compartments” I called them) in places like New York City. 500sq feet for $2000 a month (I still wonder about the cost . . .)  They just don’t have seventeen cake pans!  And why are there so many people walking down the sidewalks, buying food just for today and taking their laundry to the cleaners?  When you live in 500sq feet you have to walk OUTSIDE your dwelling. You can’t buy forty cans of the same soup from Costco. And you can’t spare three square feet for a washing machine.  I get it now.  Still, I would rather sit here on my porch by the river than on a city stoop next to the gutter.

To each their own, I am told.

Enough rambling on.  I have many phone calls to make this morning.  I still don’t have an appointment for the radiation mock-up.  I have a couple park owners to call yet for a better rate.  I have to find a small trailer and a spot for it close to the treatment center.   I need to register the kids for school and renew their library books that are due already.

I have mom-stuff to get done. And I have to find out why my sister is so sad.  (She won’t tell me. Doesn’t want to add to my problems I guess.)  I have to strip the beds in the back.  The neighbors that bought the new motorhome, have twin sleep number mattresses in their old rig that are giving us for a song.  It will be so glorious to sleep on something other than the rock hard original so-called mattresses we have now.  I have more than a dozen layers of blankets under my sheet and almost that many pillows just to make it possible to sleep.  Maybe some of this pain will go away.

Oh, the pain.  I forgot to tell you about the pain.  Changes to the size of the Monster that I, so weirdly wrote of on Saturday, have brought with it a pain that I am having trouble hiding.  A single hydrocodone isn’t working enough to keep the grimace off my face.  I am trying to push through it. When it’s at its worse, I try to walk even more.  I think if I can learn to ignore it, learn to use it somehow . . .  The stronger I make my muscles now, the faster I can get back on my feet after the surgery.  The past seven years of Fibromyalgia have pushed back my pain threshold.  When you have never been in pain, a little jab can get you.  When you have lived your life in pain, the scale of one to ten doesn’t match up.  Who would have thought chronic pain would ever come in handy?

Who would have thought . . .

Well, I talked with the nicest lady at the treatment center.  She said, my name was familiar, but couldn’t find any paperwork on my case.  She assured me she would get right on it and call me back with the schedule.  She also said they may be able to help find a spot for the trailer.  That would be fantastic.

I talked with someone about a spot for the family motorhome in September.  Reasonable rates even and a nice park.  However, they want pictures of our rig and an application filled out before they will book a spot.  Cross your fingers on that.

I also talked with my Dear Aunt Shirley. My mother’s baby sister.  What a lady.  Thirty years ago, when she was a single mother of three young kids, she was told that she wasn’t going to live past a year.  She was told to make arrangements for her kids.  Thirty years ago.  She beat the monster then, and several times since.  And she has the faith of the Angels.   It carried her through and it will carry me too.  Aunt Shirley is another one of my heroes.  She knows it though, because I just told her.

I left several other messages that I hope won’t be returned until I get some rest since I will have to hoof it to the back of the park to get a strong enough signal to have a decent conversation.  Making phone calls in this canyon is a tiring job.

That and my soaps are coming on now.

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

6:30p

In some ways, this has been the worst day of the battle to date.  The pain is unquenchable.  The hydrocodone not working, I finally took an oxycodone.  Dan came home from work and grabbed up the kids and the laundry.   I wouldn’t have taken the heavier drug had he not been with the kids.  Pain or no pain, the welfare of the children must come first.  The oxy isn’t taking away the pain so much as making me not care so much about it.  I went to the bathroom and fell asleep on the toilet. Lol.  I hope I didn’t snore!  What would the neighbors have thought to hear snoring coming from the bathroom window!   I hate when that happens.  After my nap, I called Dan at the laundro-mat and asked him to feed the children on the way home.  I can’t cook tonight.  This is why I can’t take the kids with me to Hillsboro.  It’s only going to get worse before it gets better.

“What are you going to eat?”

“I don’t care if I eat.”

“I’ll bring you something.  You have to eat.”

I am so angry.  It is frustrating to be so angry and have no one to be angry at.  It’s so hard not to scream, “Why ME! What did I do to deserve this?”  This thing is getting bigger and bigger and I am sitting here waiting and waiting.  It has been two months since I first went to the ER to have a “cyst” drained.  And I have yet to be given any treatment beyond antibiotics and pain pills.  I wish I could think of something witty and philosophic to say, but the pain and anger has washed it all out to sea for now.  I am mad as Hell. That’s all I can think of at the moment.

Maybe tomorrow . . .

Maybe tomorrow.

I woke from a strange dream. We were guests in a home in Scotland. (Why Scotland?)  I watched as a storm came blowing things around and around outside.  There was a work yard next door and wood was spiraling through the air.  Our host assured us that his home was strong and could withstand the gale.  Even as he spoke, the walls started buckling under the pressure of the wind.  Then, through a crack in the wall, I saw a giant wave come headlong at us.  The man’s strong house was swept off the foundation and began floating.  Swirling and twirling.  Still, our Host was unafraid. I was sure the two story house would tip over and we would drown.  I started searching for my things. Looking for better clothes to protect me from the rising water.  My Shoes!  Where are my shoes?  I rushed up the stairs and found Dan lounging on a pillow.  “We have to gather supplies! I have to save my laptop. I can’t find my stuff!”  Dan seemed in no hurry.   There was a girl, who was that girl?, flirting with him.  “Doesn’t she know about us?”  “About the past maybe.  She doesn’t know we are back together.”  I stopped my frantic searching and kissed him.  We sat there on the floor holding hands, while the waters spun the house in circles, threatening to dump us over at any minute.  Suddenly, the danger was not the storm, not losing my things.  But losing what was truly important. MY HUSBAND to this GIRL!   Haha

And then I woke up to the sounds of my husband getting dressed.  Shuffling through his things.  Go figure.

When I told him about the dream he said, “Really? Was she cute?” What a man.

What he failed to glean from my dream is that no matter what is going on around you, be confident that The Host is not afraid and hold on to the ones that you love.

That being said,  the tumor has grown again.  The CancerMonster has enlarged its domain. To the north it has passed the boundary between Buttville and Backdom.  To the east it has taken up ground all the way to . . . the canyon.  And to the West and South past the hippy commune and on towards Thighs.  It may think It’s winning.

But I have news for the monster: I may have IT, but IT doesn’t have me!

It can’t get into any valuable Kingdoms.  It can’t plant itself in Chestis or Ab-ner. And it may be strong and aggressive,  but it’s not a brainiac.

It can have some butt cheek.   I have been trying to rid myself of the excess butt cheek for years.  I would have rather gone to JennyCraig.  Would have been cheaper.  And funner.  (Is “funner” a word?) But we have to play out the hand we are dealt.

It’s just after 1:00p. It was an emotional morning and I have just sat down on my porch to breathe.

Instead of my Foster novel with my coffee as usual, this morning I read this journal from the beginning. It’s still someone else’s life I read about. Can’t me mine. Can’t be.

Then I went inside and sat with my kids. I asked them again how they felt about living like this. They all said the same thing. They love it. We marveled at how we feel about our 33′ home. It’s just that- Our Home. Jaymi said that she often forgets that we ever lived any other way. We are comfortable here. It’s going to be hard to leave this park, but when we do our home will still be the same. Only the view will be different.

I went back to the bedroom to change and Jaymi followed me. I could tell that she wasn’t ready to stop talking, but didn’t know quite what she wanted to say. So we both climbed into my bed and for a while I just held her.

Jaymi is my strong, silent one. Born the typical middle child, she gets overlooked and under appreciated. She does most of the work and gets the least attention. Jaymi is already showing signs of Fibromyalgia. She holds everything in until it makes her hurt. She is effected by smells and gets over stimulated easily. She is smart as a whip, yet gets foggy and disoriented at times. Stress makes her sick to her stomach. I could tell she was struggling to keep everything she was feeling in check.

“I love you mom. I will always love you no matter what.”

She kept saying it over and over. Her brown eyes were floating in tears she was fighting to control. It was a battle she was losing.

“It’s OK to cry, baby. We all need to let it out. You can talk to me. I am giving you permission to say whatever you need to say. Cry, it’s ok.”

There was no one else in the world at that moment except my eight year old little girl and me as we cried together.

“You can’t be Brave if there is nothing to be brave about. If you are not scared, you can’t be courageous. Courage only comes to get through something scary. This is scary, Jaymi. Mommy is scared too. But I am going to have this radiation treatment and then the surgery and then I am going to get better. It’s going to be hard, but I am tough.”

“I don’t want you to go away.”

My little girl meant more in that one sentence than she could put into words. She doesn’t want me to go to Hillsboro and stay away from her. And she is terrified that I won’t come back. She doesn’t want me to leave, not for five weeks and not forever.

“Jaymi, you know that I never want to make a promise that I might not be able to keep. I never say that we will go to the playground tomorrow if there is a possibility that we won’t and you would be disappointed.”

She nodded.

“I will go up to the city on Mondays and I will come back to you on Fridays.”

“We will be together every weekend.”

“Yes, baby, from Friday afternoon to Monday morning. Just like the time when daddy came here to the beach during the week and came home on the weekend. We didn’t like it, but we did it because we had to. And then after a little bit, we moved here and were together all the time again, right?”

“When you finish the radiation we will be together again, right mommy?’

No eight year old child should know what “radiation” is!

“Yes, that’s what we have to do to beat this Monster.”

“We will do whatever it takes to beat the Monster right mom? Even if it means we have to be apart for a little while.”

“Yah, but Jaymi . . . I am stronger than the Monster. I am tougher and more stubborn. I have more Love surrounding me.”

“My love.”

“Your Love.”

We cried some more. Some times when you have more love than your heart can hold it bubbles over and leaks out your eyes. It was that kind of cry now.

“But Mom? You will come home?”

“Jaymi, I am not going to die.”

There I said it. I am not going to die. If I did now I would be lying to my child. Beyond Santa, the Easter Bunny and the Tooth Fairy, I don’t lie to my children. I give them as much truth as they can handle. Always have and always will.

I WILL NOT LET HER DOWN NOW. I will not die.

Sometimes a good cry is what the doctor ordered. “Mommy, I feel better now.”

“So do I honey, so do I.”

Pphwuu

We got up and dusted ourselves off and had some brunch. Once time started up again we realized it was 11:30 already. By noon, I was finally off for my morning walk.

J stopped me for a short chat. Evidently, Robert has been following other kids instead of the rules lately. J looks after my kids like a grandfather. He yelled at the group of buds for climbing on boats and told Rob to stay away from the kids he shouldn’t be with. And Rob has recently learned to ride his bike -we are all proud of him for it -but he is now riding it through other peoples lots which is a NO-No big time. J said that all of a sudden Rob is getting into trouble that he never had before.

I think there is a combination of things at work in Rob’s little brain. One, there is a new found freedom to being able to ride a bike. Two, there is a new found little brown headed girl involved. And Three, his mom has a weird bump on her butt (he felt it to be sure it was really there) that is turning his little life upside down.

J also asked that the kids stay out of the way today. They expect a busy day in the park. Almost a complete turn-around of new RVs coming in. At a time when I am begging for a space to stay, the last thing I need is the kids getting into the staff’s hair.

After that conversation I talked on the phone with my Dear Friend Nalana. She is having child problems of her own. Our lives tend to run in tandem. It was nice talking to her as always. I just wish she didn’t live in California. I do so wish I had her right here on my porch with a coffee in hand. She could use a hug today too.

Back to the motorhome to admonish my kids and get Rob back on track. Emotions. Tiring little buggers.

That brings you up to date. Here I am in my chair, taking a breather. I should call OHSU. I haven’t gotten that call from the radiation center yet. I have to meet Dan at 5:00 and we are going into New Port to the Wal-Mart. It’s payday and Mother Hubbard’s cupboard . . .

Maybe I will take another walk. Or maybe a nap!

I think the nap wins.

8:30a

I didn’t write anything yesterday. That’s funny, because it might have been the most important day of my life. I spent it in a kind of suspended animation.

First, let me tell you about the MRI on Tuesday night. By the time we made it up the hill to the Emerald City, I was pretty well looped. (Remember Dorothy and the poppy field?) I had made use of the Valium and at the last moment, when I was removing my bra with metal clasps, I downed a oxycodone just in case. I then asked for a glass of water, both to gain some time and to wash down the pill.

No longer able to forestall the tube, I laid on the sliding table feet first and the tech made his preparations. He gave me a bulb to squeeze in case I needed to get out, and headphones with country music blaring through them. He crossed my arms over my chest and started the table traveling into the tunnel. “Oh Ho, this isn’t gonna work!” I said as calmly as I could. Maybe a much smaller person could cross their arms over their chest and not get pinned in that thing, but Momma was now as stuck as a cork in a bottle neck. Back out I slid. Arms now stretched over my head, emergency bulb firmly in my palm, I began once again to travel into the belly of the beast.

Just my hands out in the open was enough to keep me in there this time. I closed my eyes and concentrated on the music as the clicking and clacking commenced. I can do this, I kept thinking to myself. Breathe in, Breathe out. I thought of my children. My husband. And all my family outward. I felt those that were praying for me. And I felt the bump smashed into the slab. I can do this. I HAVE to do this. The clacking even matched the tempo of the music at times. Once I thought I might have been singing out loud, but realized not. Every once and a while the tech would break in and check if I was all right. Every time I said I was. One slide out near the end for some injected dye and then twelve minutes more and I was done. I did it. No screaming involved. I was proud of myself.

I staggered back to my waiting Team and we made our way down and out of the Castle to our waiting carriage and back to the Inn.

The night was long and fitful. Neither Dan nor I got much rest. The only thing worse than a bad night sleep is waking up from one. By twenty after seven in the morning, with bad convenience store coffee in hand, we were making our way back up the hill to see the Wizard. The Wonderful Wizard of OHS.

We left the children in the waiting room with their books and threats of grounding to keep them quiet and followed our escort into the exam room. My MRI scans were already up on the screen. There I was, in high def, and inside out.

Dr H came in and looked over the pictures from my late night photo session and then sat back and gave me a combination smile and sigh. I brought up the pathology report. When he heard “Atlanta” he said, “It must have gone to Dr W.” He said she was the expert he would have used had his own people been unable to identify the tumor. As for the delay, he said that it would have made his surgery easier had he known a month ago. But whether it would change the prognosis he couldn’t say.

We asked him what the diagnosis Dr W gave meant. “Round Cell” is just a description of what the cancer cells look like. “High Grade” means that it is aggressive and large. “Poorly Differentiated” means that there is no indication of what type of cell the cancer mutated from. They can’t, for example, tell if it was a muscle cell or a fat cell that started it all. In fact, they can’t name it beyond it’s general appearance. “We must go on the assumption that it is a fast, aggressive sarcoma and treat it as such.”

In other words, it’s just an unknown pain in my ass that has to be removed. Go figure.

“We now have three options. The first option, had you come to us ten years ago, would have been the only option. Removal of the muscle (and all that entails). The second option is to do radiation and then surgery. The third option is surgery and THEN radiation. Both of those come with complications.”

If he removes the tumor first, the radiation will have to cover a larger area to be sure of getting every cell that might have sneaked off on its own unannounced. There will be more damage. Scar tissue and hardening of remaining muscle.

If he does radiation first they will know the exact size and location of the tumor, but there is the chance that the site will get muddied, calling for more than one surgery to clear it all out. Preoperative radiation is not meant to shrink the tumor. The intent is to clean up the edges, making it easier to remove surgically.

He advises that we do the radiation first. We have to trust someone. So we agreed with his call. Five weeks of radiation, followed by three weeks to rest and heal, and then the surgery. Finally, we have a plan.

Chemo. That was the next discussion. There is controversy in the medical community over whether Chemotherapy is effective and worth the risks when dealing with Sarcomas. I read this over and over online and said as much. Dr H agreed. He explained that the chemo used for sarcomas is harsh. More so than chemo used in other types of cancers. “Most people who start it, don’t finish it.” At my age, and with the other health issues that I have (Fibromyalgia and Diabetes) I would be very, very sick. I would end up with nerve damage in my hands and feet. It may damage my heart (as it did my father) and my liver. And if we did the chemo now it would be “a one shot deal.” If the cancer came back down the road, chemo would not be an option for me again. The risks a second time would be deadly. We all agreed to hold that card in reserve. For now.

And having the Chemo now would only raise the prognosis by roughly 10%.

That brought me to the $10,000,00 question. “What is the prognosis? Am I going to make it?”

“You have asked a direct question and you want me to give an answer.” We locked eyes - wizard to waif. ” I will give you a direct answer. The Five Year Survival rate for Sarcomas is 50-60%. So, yes, there is a chance that this could get away from us.”

“So, what can I do to increase those odds?”

“Physically, we are going to do everything possible to attack and remove the cancer. “Psychologically and emotionally, you must keep your spirits up. You must keep a wide support system in place. Writing everything down in your notebook like you do will help to keep the appointments and treatments clinical and organized.”

“I have no choice. I have to beat this. I have three little children and one grown one that needs me. I will survive.”

I wanted to say, “I am that TREE!” But he wouldn’t have understood.

The radiation he wanted done in Hillsboro at a joint facility between OHSU and the hospital there. Dr H assured me that the same radiologist that would have treated me at the University also do the treatment at this center. The hospital there is public and they have funds available for those with no insurance. If I don’t hear from them in the next couple days, I am to call House to push them along. He wants it started with the mock-up by the end of next week. (They do a trial run to set the size and shape of the tumor into the computer and then tattoo the coordinates onto the skin so that the radiation is delivered to the same exact location every time.)

The surgery will be done By Dr H at OHSU. The university must allow it because there is no one else but House that can do it. It will be scheduled for eight weeks out - five weeks of radiation and three weeks of healing time.

Two months.

After the surgery, I will need a CT and MRI every three months for two years. If it doesn’t show by then, it will be stretched to every eight months for the next three years after that. I did some quick figuring, just those scans for the next five years comes to over $125,000. Talk about high maintenance . . .

Dr H seemed to be following my thoughts. I felt compelled to explain that we couldn’t find insurance because of the Fibromyalgia, Sleep Apnea, and Diabetes.

“I will never get insurance now.”

The Great and Powerful Wizard of OHS once more looked me in the eyes and said, “I am afraid you’re right.”

With that we shook his hand and collected the Team. We made a stop to the film library to order the CT and MRI scans on CD to carry along to the next player in the game. Then we headed out of town. I sat numbed, the whole two and a half hour drive back to the beach, looking out the window, replaying everything that was done and said over and over in my head and on my phone to those waiting for the word.

Suspended animation.

We made it home by 1:00p. Dan changed his clothes and went to work.

And I sat numbed.

I didn’t write. I couldn’t read my current Foster novel past the page in front of me. I laid in my bed with the laptop on my chest. I found the radiation treatment center’s web page and read it from front to back to front. I searched for a bit for a RV spot in Hillsboro for my little trailer. I woke up a while later with the computer still balanced in it’s spot.

I walked around the park, smiling at the passer-through’s little doggies. Waving at the regulars. Pretending life wasn’t kicking my butt. (no pun intended)

Last night, as we were falling asleep, I remembered something the doctor had said. “Dan, when he said that most people who start Chemo for Sarcomas never finish it . . . What did he mean?”

Dan didn’t answer me.

“Did he mean that they quit the chemo or . . .?”

“I know what your asking. I’m sure that he meant that they stop the treatment because it’s too hard.”

Anyway, today is Thursday and we have to figure out how we are going to pull this off. Where are we going to live while all this is happening? Salmon season is coming to our river and so are the fishermen. We never planned to be here so long and neither did the camp owners. Soon there will be no room at the Inn and not a manger in site. We can stay in this spot until August 15th and then they found something for us for the following two weeks, but without sewer hookups. September is completely booked. Unless some old fisherman detours up the River Styx on his way to the perfect fishing hole, we will have to move on up the road.
Since we don’t know where we will be come September, we don’t have a clue where to register the kids for school.

This time in our lives will go into the books as “The Year of Not-A-Clue”

Well, now that yesterday’s tale has been told, I must get busy. The motorhome needs cleaning, I have to find not one but two RV parking spots and a school for the kids. Not to mention a several hundred thousand bucks to finance the next stage of my life.

Oh, and I have to make dinner for the Team.

That should keep me busy until tomorrow.

10:30a

I woke up late this morning. At 9:00. The first thing I did, the first thing I always do upon waking, was to reach behind and check it. Yep, it’s still there. It wasn’t a dream.

Pretty much the next thing I did, after getting my coffee and visiting the water closet (and in my case, it is pretty much a closet) was to call my sister Pam. I had a job for her.

I put Pam in charge of some specific prayers. She and her son, Danny are connected in a powerful way to the Big Boss via a long line of diligent pray-ers. I needed all of them.

“I have to have this MRI and I am extremely claustrophobic. I need everyone to pray for me to stay calm and peaceful.”

That was the first specific prayer.

I also need someplace to park an old travel trailer. For $500 I think I can find something livable. We can sell it after my treatment. OHSU has limited RV parking spots. Tomorrow, after we see House and know what the plan is, we will see about getting one of those spots. If not, I will need to find a cheap, very cheap, place to put it- with hookups. That was the second specific prayer.

I am not greedy. Two specific prayers today will be enough.

I feel it helping already.

I believe in the power of prayer. I haven’t talked much about my faith. Over the years, my faith has been shaken, but not stirred! My Lord and I are on a first name basis. I don’t flaunt my faith, but I do rely on it. Especially now. The past few years that I spent mad at God are making sense to me now. All the years that I spent asking to be healed from the Fibromyalgia and getting a “No, wait” reply. Now I understand. He wasn’t ignoring me. He was preparing me. He was toughening me up. He was allowing the deficiencies of Fibromyalgia to keep this Cancer in check. I believe it. Whether anyone else does, is not important.

Today, I am the tree. Maybe that is why my name is Teresa? Haha.

And I am Typhoon Teresa, ready to take on the Monster by storm!

Pray for me, will ya?

Time for a walk. My wandering brought me, unexpectedly, to the porch swing sitting in a clearing near the dock. It is so nice here. The wind is pushing up little waves in the river and the Sun is warming my face. This is one of my favorite places.

I just remembered something else that happened yesterday. While waiting in line for a hamburger, my now seven year old son hugged me around the waist. Very slowly he moved his little hand down and ran it as softly as a butterfly kiss over the bump. I said nothing and didn’t move an inch while he “secretly” inspected what was ailing his mommy. It was the first time he was so brave. I was proud of him. It was a scary thing he did.

When he was satisfied with his silent inspection, He looked up at me and said in a small whisper, “Mom, I felt the bump. It’s big.” “Yah, baby, it is.”

And we exchanged private crooked smiles. My babies are scared. But they are being brave. For Me. I have been trying to be so brave for them that I failed to notice how brave they are being for me.

I am truly blessed.

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

2:00p

The children’s bags are packed and in the trunk. I have assembled the makings of sandwiches -a pound of ham, cheese slices and mayo in a baggy, a loaf of bread, and some chips. This is going to have to be a low budget trek. The gas and motel, not to mention the payment to the doctor makes eating out, out of the question. I am going to make dinner by 3:30 and we will be on the road by 4:15. That should give us enough time to get a room and get to the hospital by 8:15. I took the first of the Valium about an hour ago. Courage sometimes comes in small packages.

If I don’t get back to you today, I’ll catch up with you tomorrow after my meeting with House.

**********

7:20p

We are here in the motel room close to the University. Dan has gone to a grocery to get some cup-a-soups and drinks. It’s almost time.

I have been thinking about my conversation with Dr A. I can’t help feeling that there was another reason he didn’t send it to OHSU. I got the impression that he didn’t want OHSU to have it. It was with a small degree of reluctance that he took the number of Dr H’s assistant to fax her the report. I am confused. But I can’t think about that right now.

Calm and peaceful thoughts only please. It’s almost time to go in the tube.

8:00a

I did sleep. But it wasn’t a joyful sleep. Once I got into bed and took measure of my pain and the condition of the source of it, my heart dropped. The bulge in my backside felt different. Instead of a fluid filled pocket, the site is as hard and tissue filled as it was before my surgery. Maybe bigger even. I called in Dan to get his opinion. He tried to spin it, but I could see it in his face. It was “lump” not liquid. I think the missing tumor has come home to roost.

I prayed. “Lord, I want to stay here. . . With my children and my husband.”

I have been feeling the remaining tumor growing, but how did it grow so fast? Seemingly over the course of the day, it grew to fill the place left by first removal. It was “softball sized” before. Now?

While I was enjoying the day and not paying it any mind, the CancerMonster was hard at work.

Meanwhile, we don’t know where the pathology is. Who was responsible for making sure it arrived at OHSU? Hopefully, today’s phone call will tell me that it WAS there all along, just not where the Sarcoma team expected it to be. That, in itself, is bad enough. It means the expert pathologist hasn’t been the one studying it for that past month. But if it is truly lost, truly never made it to the university, what then? Unfortunately, I think I now have plenty of new specimen to offer for study in it’s place. But do I have the time for a new study to give?

This game of hurry-up-and-wait is getting to me. Literally.

Has my treatment really been delayed by the pathology? Would it have taken this long even if the test had been running competently? Who was supposed to be the overseer? Who was responsible for making sure of the progress?

Once again, it seems like this thing has doubled in a week’s time.

I am that TREE! I tell you! I will survive this. I am too old to Die Young and not nearly good enough as the song says I should be.

Meanwhile, because of the party yesterday, there’s no clean laundry today and Dan has gone to work. I need to lug the dirty clothes into town for washing. At least I will be in town with better cell coverage, ready to receive the news I need.

The regularly scheduled program called “Life Marches On” has replaced the “Breaking News.” I am still “Mom.”

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

4:00p

It was an eventful day. I gave “them” until 11:00 before I started making calls. I finally made enough people mad (or worried?) as I was transferred from one place to the next that I ended up on the phone with the Pathologist who ran the first test. Yes, he did the test. Yes, he sent it on when he got in over his head (my description, not his). He sent it, on June 21st, to . . . Emery University in Atlanta, Georgia! “Why would you send it across the country when OHSU is an hour away?” He said when he realized what he had, he thought the foremost expert pathologist in the country should see it. So, he sent it to Dr W at Emery University.

“And she gave us a diagnosis.”
“You have the results?”
“Yes, I have it right here.”
“Well?”
“She found it to be a poorly differentiated, Round Cell Sarcoma, High Grade.”
“And when did she make this finding?”
“We received the report back on . . . June 28th.”

June 28th. It is now July 23rd. Twenty six days ago, this man knew what was growing inside me. For twenty six days, he sat on this information. And so have I. I have literally SAT on this rare, high grade, aggressive sarcoma.

I won’t tell you what I was thinking at that moment. I will say that I was much more polite than I wanted to be. And that wasn’t very polite at all. It’s hard to even write this. I can’t believe that the test has been completed for three and a half weeks. I really don’t know who to be more mad at. This thing has been growing unchecked, waiting for a test result that was completed and sitting in a file somewhere.

I gave Dr A (the Corvalis pathologist -and the A can stand for whatever you think appropriate) 10 minutes to call Dr H’s assistant with the information and then I called her. She was as blown away as I was. She said she would get the report faxed to her and make them overnight whatever slides they have in Corvalis. She said that only the submitting Doctor could request the slides from Emery and she would have Dr A do that ASAP. She apologized for what someone else had done, or in this case, not done to me. She couldn’t believe it. And neither can I.

“Don’t worry. We are going to fix this. I’m going to take this directly to Dr H and he will know just what to do.” She was almost in tears herself.

If this delay means the difference between me walking again . . .

No, I can’t even think it. Dr H believes I will walk. I have to trust someone. I have to believe someone knows what they are doing.

Tomorrow, I have to have the MRI.

8:00a

It’s still raining. It rained all day yesterday too. I spent Saturday, shopping in the rain for a cookout today. Tomorrow is Robbie’s 7th Birthday and today we are celebrating with a little party. Kelli and Tim, and Denny and Leenie and their three kids are coming down from Portland to, evidently, sit under our awning and hide from the rain. Eleven people. It’s still raining. It’s Oregon. What did I expect?

I have twelve ears of corn to cook in the fire pit. I have chicken and sausage dogs wrapped in bacon to cook on the grill. I have company coming. I have a motorhome to house them. I have no idea how to do it in the rain. Please stop raining.

They will be here by noon.

J stopped by to let is know that we could use the porch at the camp store for our party. There are tables and grills and a roof to keep is dry. We’ll do that if it doesn’t stop soon. The sun is trying to peek through. Maybe if I blow hard enough I can catch the tail end of this thing and move it on past. They say it’s the remnants of a Typhoon way out in the Pacific. That’s me- Typhoon Teresa.

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

9:00p

It was a nice day even if we got a bit smooshed together keeping out of the wet. We didn’t use the offered camp porch. Ours worked out fine enough. There was just enough dry time to get the food cooked and do a little fishing with the kids. The girls caught tons of fish and Jaymi caught two crabs that scurried back into the water faster than I could snap a picture. I think everyone had a good time -especially the Birthday Boy who caught his very first fish on his very last cast. It didn’t matter to him that the fish he caught was no more than a minnow in size. He was elated. It was a joy to see his face shine with happiness.

I had a good time too, but I am wiped out and off to bed.

Tomorrow, I have to find out where my pathology has hidden and get it to the city somehow. But not tonight. Tonight I think I will be able to sleep!

It’s raining again today. I spent the afternoon walking in the rain trying to catch a cell signal. When I got tired of being drenched, I got in the car and drove around the park looking for a cell signal. Finally, I put the kids in the car with me and drove into town looking for a cell signal.

What was so all fired important about finding a cell signal, you ask? Well, I’ll tell ya. You know how I keep saying that the pathology report is not ready yet? After more than a month? Today I found out what was taking so long. The main lab at OHSU has no record of receiving it.

Yes, you read that right. All this time we thought the cells were doing what ever it was that they were supposed to be doing in a petree dish in the “expert of all labs” lab at OHSU. But, according to House’s assistant who has been searching for said cells, it is not there. So not only was I searching for a cell signal, I was searching for a signal of where my cells got to. They wanted something from the pathology up at OHSU by Tuesday morning latest. It was Friday after twelve.

I put in a message to Dr K with the dilemma, asking for a call back. He was the one who ordered the pathology and I couldn‘t think of anyone better able to help me find it. He is in surgery in Portland on Fridays but the woman I talked to said she would try to catch him. Not wanting to miss him if he called back, I had to make sure I was able to receive calls. Hence the mad dash in the rain. Cell coverage here in the canyon is shoddy on the best day. The storm had washed out all signals under cover. The only way to keep a line open was to stand in the middle of the road in the rain. That was getting old fast. And I couldn’t get a hold of Dan. I was frantic. What Dan could have done, I don’t know. But somehow it was imperative that I tell him.

I allowed the problem to unnerve me. In layman’s terms: I freaked out. At least, being sopping wet, no one could tell half the water dripping off me was tears. All this time. Waiting for the report to start the treatment. Wondering about the given name of my sworn enemy. Cursing the tech for taking so long. All the while the CancerMonster was gaining ground like an Oregon Mold in the rain.

I put the kids in the car and drove towards Dan’s job. I couldn’t get a hold of him and I needed him badly to calm my rising internal fear. I don’t know why I thought it would be a good idea to pull onto the job site, red-eyed and crazy, and make him fix it. In front of the other construction workers and the hotel owner who is already worried that my problems will somehow slow down his progress.

Coming to some kind of surface sanity and three bars of cell coverage, I pulled into the parking lot of a small grocery store to think and calm down.

“We were already here at this store this morning, mom.”

“Did we forget something?”

“Can you buy me CANDY?”

“Hush, all of you.”

OK,now think. Dr K carries my files back and forth from Portland to Lincoln so no one in either office will have an answer for me. Dr K has not called me back so he is either still in surgery or gone for the weekend. There must be someone else who knows where the pathology is. I don’t even know the name of the lab that had it first. But the HOSPITAL here where the sarcoma was found must have a trail. Yes, why didn’t I think of that? I called the hospital main number and asked for the surgical desk. A few minutes on hold and I realized that was the wrong place. Hang up. Call back. “I need to trace the pathology for a surgery I had a month ago.” “Let me connect you with the lab.”

After explaining my situation in more detail than the listener cared for, I was connected to the Specimen Processing Desk. Unable to help me or unable to understand me, the first person that answered put me on hold to get someone else that spoke “frantic”.

The next person listened carefully and understood my problem. She got right on the case. She said she would call the lab in Corvalis and track the slides for me. It was then close to 3:00p - on a Friday afternoon. She would have some kind of answer for me before she left for the day at 4:30.

OK, can’t go back to the park in the canyon until she calls me back. Slowly, and calmly this time, I continued in the direction of the job site. There had been another problem earlier, that I needed Dan to solve. A money problem having to do with the ugly old car I had been leasing all summer and the card that made it possible. Nearing Depoe Bay, I finally got a response from Dan on the Nextel walky-thingy in my phone. “I got your beep. And your voice mails. And your IM and email.”

“Finally.”

“Give me the number to the rent-a-car again. . . Ok stop talking while I program it in . . . If you keep interrupting me, I can’t do this.”

“Don’t yell at me, I have had a bad day.”

He hadn’t actually yelled. Dan very rarely raises his voice. But he has this annoying way of yelling at me softly. He swears it’s not yelling, but after twenty years, I know when he is Thinking Loudly at me. He was Thinking Loudly, if not at me, in my general direction.

The poor guy has been dealing with my Fibro-Fog induced anxiety attacks for years now. One minute I am asking him if I should do the dishes first or the laundry and the next minute I am telling him not to tell me what to do. He has a perfect sense of direction. When I am really fogging, I can get lost on the way to the mail box. Now he is dealing with the FibroCreature and the CancerMonster at the same time ganging up on him. I feel for him, I really do.

“Why don’t I just come to the job?”

“No.”

“I’m almost there.”

“No!”

NOW he was yelling. I went too far. Pulling into the tourist center overlooking the ocean, I turned off the car and exhaled. “What are we doing here?” came a voice from the back seat. I had almost forgotten they were back there. “We have to be somewhere until I get my call. This spot has a better view than the grocery store.”

“Yah, your right.”

“Maybe we will see a whale.”

In the three months we have been down here, we have yet to see a whale. Yah, looking for whales. Let’s go with that.

“I can’t get a call out. I am heading into Depoe.”

“I am already here. Looking for whales.”

Dan pulled in beside us a few seconds later. He took one look at me and shook his head. I looked in the mirror and shook my own head. I guess I was kind of a mess. He gave me a hug and made his call. Within minutes he had that problem all straightened out. Too bad he couldn’t find my missing butt bump. Too bad he had to go back to work.

Not too long after Dan drove off, I got the call I was waiting for.

“The lab in Corvalis still has SOME slides. The tech couldn’t tell me if anything had been sent to OHSU because the supervisor has gone for the day. She won’t be back until Monday morning. I will call her first thing Monday and then call you back.”

“Should I call YOU Monday morning?” I wanted to be sure she didn’t forget. “No, it’s right here on my desk. I will call first thing and get back to you.” Was she reading my mind or did I question her memory out loud?

There was nothing more that could be done at that point. It was 4:00 on Friday. I pulled away from the Whale Watching Center and headed back towards camp. Calmer, yet still weeping. How could I have let this go so long trusting that the test was just taking long due to the uncommon specimen. Maybe it is in a different lab on the other side of OHSU with a different expert lab tech diligently completing the report right now. Maybe it fell out of the truck on the way. I can see the commercial now: ” STRANGE LUMP SEEN BUMPING ALONG I-5 BETWEEN CORVALIS AND PORTLAND. Details at 5:00.”

Maybe tomorrow I will post a reward. . .

3:00p

I spent the morning alternating between resting and cleaning the motorhome and thinking about everything. Dr E did his job of letting me know the worse case scenario. Dr H was much more positive than his colleague.

“Am I going to lose my leg?”

“Nooo. Your not gonna lose your leg.”

“I was told I would be crippled if the remaining tumor was removed.”

“You will walk. You might be weak. You might need a cane and have trouble with stairs. You might have a limp. But your gonna walk.”

“So what is the prognosis?”

“Your not gonna die from a tumor in your butt.”

And those answers, related to my family across the country, has given Dr H the name “House” and a bid at sainthood. Other questions posed such as “What is the name?” and “What form of treatment comes first?” were not answered. The pathology is not completed yet. (?!) Everything still hinges on that report. The type of sarcoma, (if it IS a sarcoma) the grade and stage of the tumor and if it has truly not spread will determine the course of action.

The first step, however, has been made in the direction of the OHSU MRI lab. Next Tuesday night (another week’s wait) at 8:30p (yes, late at night) I get shoved down that tube for the second time in my life. Oh, how I hate that tube. The last time it took them three tries at entombing me in that contraption before they put me under. They said the screaming was bad for business. I relayed my failure to the Wonderful Wizard of OHS and with a chuckle he said I could have an Open MRI. That turned out too hard to schedule and get the results back to the wizard in the same day. Conscious Sedation would require a daytime slot with a specialist. They were willing to do this also, but that would mean that Dan miss two days on the job. So I told them I would have to cowboy-up and take the normal route down the yellow brick road. I will be going in feet first and since it’s my other brain they are scanning, my head will be at the edge of the tube and shouldn’t be restrained. That should help. That and the Valium they have called into my pharmacy. And the fact that an MRI is most likely not the only horrendous thing that is going to happen to me in the near future. Kelli, my dear sweet Kelli, had this advise: “When your in the tube, mom, pretend that it is one of us. Pretend that it is Brandi, or Jaymi, or Robbie in there and how you would comfort them. Then hear those words in your own mother’s voice.” Lord, how I love that girl!

So, the MRI at 8:30p on Tuesday and then Wednesday morning at 7:40a, I see House again for the results. Hopefully by then the pathology report will be completed. We can go up to Portland after work on Tuesday. Since the scan will take 90 minutes (assuming I don’t cause any delay with silliness) we will stay over in a motel close by instead of driving across town so late to Dan’s brothers house just to return by the early morning appointment. In all likelihood, Dan can be back on the job by noon Wednesday.

When asked if he thought it could be Rhabdomyosarcoma, Dr H said that it wasn’t likely. “You don’t fit the age profile.” We asked him for more words to look up then, and he shook his head. I know the doctors hate the internet in the hands of their patients. “Be careful what you read or it will scare the hell out of you.”

“We’re already scared. We’ve had a month to read.”

Sitting there in the office of the Great Wizard, on the big Emerald Hill where the world of OHS was reality, I wondered, not for the first time, if I could click my heels together three times and have it all be a dream.

OK, what if I click them four times?

What if I never stop clicking?

Seems I don’t have the right shoes.

Tomorrow, maybe I will go to the outlet mall and see if anyone has a pair of shiny red leather flats. Size 10. If not, I might have to track down a witch and sit on her. I’ll let ya know.