First of all, today was not a good day to be on the road. More on that later…

Huntsman. Given the drive up and the treacherous walk through the parking lot they kind of had me at the heated walkway (and we went in the back door). And then, Wow! I’m used to waiting rooms (and occasional office visits) where we may as well have taken a ticket with a number on it from a machine. But this was different. Before we even met our doctor we were warmly introduced to a couple of nurses, the patient coordinator who’d been so great to get us in, one of the resident physicians and a social worker. Each one gave us their cards–phone numbers circled–and encouraged us to call them with any questions. And I think they really meant it. (It’s a little like the difference between being one of five weddings at the Manti Temple in mid December vs. being one of fifty weddings at the Salt Lake Temple on any given day in June.)

When we finally met the doctor he arrived with two other doctors and another nurse and we all had a good chat. The consensus was we all need more information (specifically they want to see the slides from the tumor because while they clearly point to sarcoma, the pathology report was a bit ambiguous as to which type, and we need a better CT scan to see what’s left, if anything) before we do something drastic. They did an EKG and some blood work tonight. Then tomorrow we get to head back up to “the palace,” as I affectionately refer to it, for CT scans of the brain and the chest.

Finally we are going to start get some answers regarding the rest of Shane.

The sarcoma team meets every Monday. So we decided to postpone surgery; spend the rest of this week gathering the missing pieces; and then wait till a whole team of doctors, nurses and pathologists who specialize in sarcomas and tumors of the head and neck get together to collaborate on Shane’s particular case.

We’ll know more–much more–a week from Wednesday.

By the time we were done it was well after six and the snow was still coming down. The traffic report estimated it was an hour’s drive from north SL to south SL and two hours to Lehi. We’d received news that a family member had been lifeflighted to University Medical Center with severe head trauma. We decided to wait out the storm outside the NCC with family and friends. (If you could add one more person to your personal prayer roll, will you please pray for Quinn? His need is much more urgent than ours at the moment.)

Finally the traffic and the snow had slowed enough we felt it was time to head home. We averaged about 35-40 mph the entire way, but even at that we passed six different cars that had done 180s and were facing the wrong direction, several of which had crashed into other cars. And that was just on our side of the freeway. Who knows what mayhem had broken out in the other direction.

It was messy out there.

Special thanks tonight to my mother, for braving the elements when the snow was thickest to round up films and reports while I was at work; my SIL Jana, for a surprise gift of Scentsy sugar and spice; Christopher’s sister Lindsay and C Jane’s brother Jesse who brought dinner over, along with a sweet note illustrated by her darling kids; my good friend Becky who kept my youngest kids like her own and made sure they all went to bed early on a school night (which is better than they get at our house); and to an anonymous group of generous donors who left a Christmas Jar–filled with what we are quite sure are hard-earned pennies, nickels and quarters plus–on our porch.

Our jar (and our fridge) is full.

The puzzle pieces are falling in to place.

(The snow is falling too, for that matter.)

And I’m beat.

You could actually draw a (mostly straight) line north and south through my neighborhood and mark homes of families struck by cancer. We used to be the one hole in that line, but not anymore. A friend of ours two houses north who survived her round gave me some good advice after she heard our news.

“Keep track of all the tender mercies that will come to you, because they will be many.”

I’m thinking I ought to get two notebooks. One for filing the medical bills and one for recording the blessings. My hope is that by the time we are all done with this, the blessing one will be fuller than the one for the medical bills.

We’ve only just begun, but so far that certainly seems to be the case.

I’m documenting most of the sweet blessings over on my other blog, but since, as most of you know, I have a tender place in my heart for teenagers, I’ve got one for you here today:

As a preface and on a seemingly completely unrelated note, you should know that the very last time I went grocery shopping I purchased something I have never in my life purchased before. Packets of gravy mix, including turkey gravy. Sure they were on sale, but gravy mixes…really?

Late yesterday afternoon found me feeling not very well. I was weak, fatigued and, for some odd reason, my right hand wouldn’t stop shaking. Not a great way to go into a fast. My husband was preparing for the usual run to the Saturday-night reunion held at the local grocery store because we were completely out of bread and milk. I usually have him pick up something for Sunday dinner as well. He asked me what I wanted and–this will sound completely wimpy, I know–at that moment the thought of making Sunday dinner the next day was completely overwhelming to me. Actually, the thought of even still being conscious was completely overwhelming to me.

Not 20 minutes later we heard a car engine running outside and someone knocked at the door. Our friends’ son Christopher–who grew up with Luke and used to be one of my cub scouts a way back when–was there with two huge trays of food. He and his mother (well, often the entire family) work for some other friends of ours who happen to be the best caterers in the valley (I’m pretty much including SL valley in that, too). Apparently there were leftovers from a dinner they’d done and I figured Christopher’s mother, Olga, had sent them. There was enough food for Sunday dinner and for Monday too (which is wonderful, because our appointment at Huntsman tomorrow is in the late afternoon and I have no idea when we’ll get back).

The trays of food were all sealed up, so I didn’t even open them. I’m sure Christopher must have said what they were, but I just refrigerated them and then drug myself to bed.

Today at church I went up to thank Olga and she asked, “For what?” I told her and she laughed and said that it must have been entirely Christopher’s idea. She hadn’t worked that night and didn’t know anything about it.

Now how many 18-year-old boys do you know who would do something like that? I love that kid! It may have been a simple thing in his mind, but it was a huge and welcome blessing in mine.

Today after church I opened up the trays to find the fixings for a fabulous turkey dinner: turkey breast, mashed potatoes and sweet corn. There was even a can of cranberry jelly sitting on the kitchen counter. I’d noticed it before but had no idea where it had come from.

All I needed was the gravy. And it had just so happened…

I’ve thought about starting a side blog on which to keep people updated on Shane, but that feels like too much work for me right now and this blog has always been just what it is–a reflection of what is going on in my head–so if there is too much cancer talk here right now that is only because now that the holidays are over that is what is occupying our time and our minds.

We are blessed to have relatives (essentially cousins who married doctors) in the medical field who have offered to advise us as needed. Their help has been invaluable. One in particular found himself fighting cancer at the young age of 35. It was at his urging that we decided yesterday to call Huntsman Cancer Institute now, instead of waiting until after the surgery as one of our surgeons had advised.

One of the difficult things about finding yourself looking for an oncologist is that everyone has a strong opinion about who you should go to and who you should avoid. For better or worse, people are passionate about their oncologists. But my cousin’s husband gave us contact information for the Sarcoma Services at Huntsman. I like the idea of a team approach–it’s so, well, House-like.

Unsure anyone would be in on the Friday after a holiday, I gave them a call.

Wow. The service is amazing. Despite the short notice, I was able to make an appointment for Wednesday–the day before Shane’s schedule surgery–with a Dr. Bentz.

Then, yesterday afternoon, we got another call from our oral surgeon. He was checking in to see how we were doing and to see if we had any questions. I have to say I love a doctor who will call you at home on a Friday afternoon and then spend all the time in the world with you. Every time I have spoken with Dr. Dobson he has taken care to answer every question and made an effort to empower us to feel comfortable in making sure we doing what’s best for Shane, even if that means rescheduling surgery.

After speaking with him I decided to call the patient coordinator at Sarcoma Services again (even though she told me she’d only be working until 3p.m. and it was already after 4) in order to check if we could get in to see Dr. Bentz a little sooner than one day prior to the surgery. If we do end up postponing surgery, I’d prefer to give the surgeons more time to fill their schedule with someone else who may be waiting for help (because I know the waiting is one of the hardest parts). She was able to squeeze us into Dr. Bentz’s schedule on Monday–that’s this Monday. That does give us a little more time to get more information and consider our options in order to make sure we are doing the right thing.

We’ve been advised that because sarcomas are rare, the treatment protocol may not be as well established as that for the treatment of, say, breast cancer. We’ve both felt that the focus up to this point has been on the surgery, mostly because we are seeing surgeons and that is what they do. But we need to see further down the road than that. We want to get a second opinion not from someone who just sees something like this occasionally in his or her broader practice, but rather from someone who essentially lives, eats, breathes and sleeps sarcoma. We want a more holistic approach.

Hopefully that’s what we’ll start to get come Monday.

Just so you know, yes we feel blessed to live within an hour of a well reputed Sarcoma Services center and yes we feel blessed to be able to get in on within one business day to see a specialist. Thank you again for the thoughts are prayers–they are working for us. We are inviting family and friends who may be fasting this Sunday and who are so inclined to please remember Shane and join us in praying for the best possible and most successful treatment–for healing and well being.

Like my dear friend b., I avoid New Year’s resolutions. Unless forced to, I rarely attempt something unless I know I will be good at at. In actually admitting that just now, I realize that means I am operating from a place of fear, from a perspective of scarcity rather than of abundance.

But a recent post at Segullah about playing big turned me on to this quote (which, I believe, is actually by Marianne Williamson) and I’ve been mulling it over:

“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It’s not just in some of us; it’s in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.”

Today I am considering one thing I can change in the way I live my life that will give me the courage to shine. At the moment I think it has something to do with having the courage to ask God (and really mean it) each morning what he wants me to do with that day (instead of asking for help to do what I want to do with it) and seeking the courage to actually do it.

And on those days when I feel too used up or I get too busy and I forget, I will just remind myself to try again tomorrow by remembering this:

“Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.” ~Mary Anne Radmacher

Without feeling pressure to make a resolution, what is one thing you would change to help you shine even a little brighter?

Because despite the tone of my last post, I really am trying to look at the bright side (the cup is way more than half full) I have to report that I have finally attained Nirvana.

In the form of Sweet Rice with Mango.

I am half tempted to get on a plane to the Isle of Man right this second and go grab my sweet mango-lovin’ boy and bring him back home with me for lunch tomorrow.

Except he’s got work to do.

So one of these days I might just have to grab YOU and we can head down to Spicy Thai for some masman and mango.

Thanks Katy for the gushing recommendation. We all concurred with your glowing review.

Thanks Mary and Richard for the excellent company.

Getting ready to welcome 2009 with good great food and friends feels just right to me.

Happy New Year!

People keep asking us how we’re doing. I’m never quite sure how exactly to answer that. My token response has been “We either being really blessed or we’re in denial.” I suspect it is a both–a lot of the blessed part and a little denial, too.

It’s like we just got called up to embark on a trip, but we don’t know the itinerary. We’re already on the plane. We’ve taken off for somewhere; but we’re stuck in a bit of a holding pattern as we approach the first layover. All we know is that it will be somewhere we’ve never been before. And we have no idea where the next leg of the journey will take us or what kind of ride it will be.

At least I’m in good company.

I’m sure I’m not the only one who gets more than a little uncomfortable with turbulence. But I don’t think Xanax would be the ticket for this ride.

*********

Today my friend Alice called me out of the blue. She didn’t know, of course. She just happened to be thinking about me.

Alice has been there before so I didn’t have to explain to her what I was feeling. What we’ve been through to this point. As I was filling her in on the what we know so far and what little we’ve been told about the next stop on our itinerary she said, “So the surgery is next week.”

It hit me.

The surgery is next week.

*********

Over the past couple of weeks I’ve noticed it when people have looked at us kind of quizzically, as if they would ask, “You seem fine–how can you be so normal?”

Normal is relative I guess.

What is normal for cancer survivors (first lesson–anyone battling cancer is called a survivor) and their families and friends?

Life goes on. Dishes and laundry. Work (well, for me anyway). Mouths to feed. Bills to pay. Whatever.

*********

The surgery is next week.

I still can’t quite wrap my head around that.

Thanks again for the many thoughts and prayers, well wishes and kindnesses. If I don’t return your comments, your calls or your e-mail messages right away, please know it is not out of a lack of gratitude.

(From the archives–it was the best I could do–but I still believe. Now more than ever. If reruns, aren’t your thing, though, go here to check out more thoughts on Santa from another Believer).

I.
The atomic clock indicates that for the fourth time this week (is it only Friday already? Nope. Now it’s Saturday) I’ve stayed up well past my bedtime. Tonight (this morning?) I’m half-heartedly trying to hide “the take” from a day of Christmas shopping with b. and I realize something. With the exception of my youngest, no one is interested enough that I really need to hide anything. I can just more or less put it away.

I realize part of the magic is gone. And I miss it.

Sure it’s easy to be lured away by the siren song of retail. It seems even harder these days to prevail against the onslaught of commercialism in order to help our children find the true spirit of Christmas. And of course its necessary to recognize our own abundance–at whatever relative state it is–and acknowledge its source and be grateful and give more of ourselves to those who are without.

But at the same time, Santa’s not the bad guy here. In the innocence of youth Santa is merely another messenger of goodness and giving. Of knowing your name and that even though you were an all-out tomboy who never played with dolls what you really, really wanted that year was the Crissy doll with adjustable hair. Of letting you know that who you are, how you feel and what you want (within reason) is OK. And hopes and wishes are something to be acknowledged and even granted once in awhile.

I miss the excitement in the air and the tangible anticipation of surprise and delight that seems to come so naturally to small children.

But I still believe.

II.
Last night my husband and I were driving home along University Avenue and I noticed the bouncy white ball at the tail of a Santa hat flapping up and down over the seatback of a shiny, red, top-down (yes, it was only about 19 degrees) convertible.

Could it be?

Was it really him?

I pleaded for more speed because I just had to see for myself…

As we pulled up in the left-turn lane I looked out my window and what to my wondering eyes did appear?

‘Twas Santa.

I rolled down my window, waved my arms wildly and yelled out, “Happy Christmas!!!”

Santa waved and shouted back, then noticing my husband was driving he advised, “Now you make sure he’s helping with the housework.”

From his lips…

(I’m telling you…that Santa can still make a girl’s dreams come true!)

Merry Christmas to you and yours…

Love,

Despite my worthy goal of avoiding retail hell heck this season, I found myself at that seventh circle of heck, Wal-Mart, early this morning for a few odds and ends.

And that’s when I realized, my drivers license expires today.

Dang.

My sweet husband, who knows I am loathe to go within a ten-mile radius of the DMV, offered to drive me there in order to get that unpleasant piece of business over and done with while I was still legal and before it got too busy.

Bless him.

After we were done with the obligatory ugly mug shot, the clerk, with whom we had been visiting about some mutual acquaintances, inquired if Shane was my dad.

Yeah, baby.

Obviously we could have taken that either way–either he looks old or I appear quite young for my age.

In the best interest of both of us, I’m going with what’s behind Door # 2.

After we returned, my 13-year-old daughter looked at me and said, “Mom! Why didn’t you let me curl your hair? I could have made you look like a total babe. Then when you get pulled over the officer would take one look at your picture (that part cracked me up especially, because you know, the photo would speak so much louder than my actual present self) and say, “I’m going to let you off with a warning.”

Oh yeah, because it’s that easy. I’m so near babe-ness all it would take is a few curls and I’d be so there.

Yeah, baby.

I still hesitate every time I want to post about this latest turn in our lives. I’m fairly certain people do not come to the happy land of blog to read about heavy things. I promise I won’t darken your screen with my deepest thoughts and worries–I’m trying hard not to darken my own screen with them as it is. But I need to remember this is my blog–it’s about my life–and it needs to be what it is. Whatever that is.

Remember my good friend M?

Last night I asked our friend Lynda if she would make sure someone told M before church today so she wouldn’t find out over the pulpit. M’s been down the cancer road (if you haven’t already, go back and read her story) in one of the worst ways I’ve ever witnessed. I know she loves me and my family and I was worried about how she would take the news.

This morning her husband dropped by with his arm full of goodies and this note:

We are SO sorry you guys have to go through this.

Sometimes we are asked to walk down some really dark and scary paths, but thank goodness, you don’t have to walk it alone.

You have a bunch of people who love you and will help any way they can.

Heavenly Father and Jesus will be there for you too. They love you so much they will see you through this.

Just know you are in our hearts and prayers. I would LOVE to help any way I can.

Don’t know if this helps–my leukemia was about as bad as you can get. I should have been dead a bunch of times, but it wasn’t in God’s plans–so here I am, still kicking up dust in Provo.

Send you both a kiss and a hug.

Love,

M

I know Miss M (who is one of the best people to have ever kicked up dust in Provo) speaks the truth on all counts. We are feeling it in so many ways already. I hope you won’t get tired of hearing it, but thanks again for all of your love and prayers.

Shane waiting for the sun to come up (Finland 2006)

Besides getting our feet knocked out from under us and the very breath knocked right out of us as we both learned the news, one of the worst parts of this (of this what? there are no adequate words)…has been having to break the news to others. Nothing prepares you for it. Absolutely nothing.

Hopefully being able to share some good news (I don’t even have to wait for Relief Society to do it!), will compensate for that somehow.

The MRI indicated that the first surgeon removed the bulk of the tumor in the initial surgery.

For the first time in almost a week we felt we could breathe again.

That means three things:

One, they now just have to go in and remove the bone in which the tumor was growing and a safe margin of tissue around it.

Two, instead of a five-hour surgery in which they would have removed a lot of Shane’s facial structure, they predict to perform a much less drastic surgery around about an hour.

Three, they believe they can get it all. (So this last one may have been a little redundant, but I just needed to say it one more time.)

We’ll cross the next bridge–finding and meeting with an oncologist, considering possible radiation, and completing more tests in order to determine that it hasn’t metastasized to anywhere else–when we get to it.

The surgery will take place on January 8th. (We’ll all be fasting for Shane on January 4th, in case any of you would like to join include him in your fasts that day.)

Our collective prayers are being answered already. Thank you!

I realize a mere “thank you” is not enough to express the deep appreciation we’ve felt as so many dear friends have rallied around us. But please know we have both been so touched and blessed by your love and support. So thanks again.

Shane and the kids on Thanksgiving Day 2008

Shane sitting in the sauna of Jean Sibelius (Finland 2006)