Thursday, June 30, 2011


Scanxiety. You will not find this word in the Merriam-Webster dictionary, but it is in every cancer patient's vocabulary. Or if they don't know the word, they for sure know the feeling. It is the anxiety you get around the time you are about to be scanned. It is nerves, holy cow, to the tenth degree. You make an appointment and as the day approaches things get ugly inside.

Sometimes it takes looking at the expiration date on a gallon of milk for the reality of a date to set in. Like seeing 12/25 is the surest way of knowing Christmas is so close. This milk will still be good at Christmas? No way. This week I have been plagued by mini panic attacks as the date 7/8/2011 stamped on my milk shouts out every time I open the fridge.

The 6th (Wed.) is when I will actually have the scans done, but I should know the results on the 8th. It has crept up so fast. I was just getting far enough away from the diagnosis I could almost forget about the whole thing for a day or two here and there. I could pretend it never happened. And then start believing it. But as the day gets closer, so am I to the reality of it all. And the weight. And the wait. Sigh.

I have had a lot of questions about scans, which I hope to answer here. So what do I mean by scans? They will be doing a full body PET (Positron emission tomography) which uses a radioactive tracer injected into the vein to see if there are any tumors. The scan is expensive ($5,000, thank goodness for insurance!) and nerve-racking, but very accurate. Because cancer cells have a higher metabolism than regular cells, they light up for the scan. They shine through for the camera. And it's the ugliest thing I've ever seen.

Here is what the Dr. pulled up when we were trying to feel the tumor they found in the thigh. At this point it was .8 cm. I think they told me any tumor over a millimeter would be detectable.

The tumor "lights up" with gamma rays? for a PET scan

Why scan the whole body? The location of metastasis in a stage IIIc patient is evenly split between the brain, liver, lungs, bones, and distant skin or lymph nodes. There are other places it could go too. And so they check everywhere. If they see something suspicious, they will biopsy it to determine it is melanoma, and not another kind of cancer. If you have cancer in the lung, it is really important you know what kind of cancer it is so you treat it right. It's not lung cancer just because that's it's location. It's not brain cancer if they find it in the brain, it is melanoma that has metastasized to the brain.

If they don't see any cancer, I don't have cancer right? Why would they think it could come back if they can't see anything? I wish it was this simple, but the tests can only detect tumors, not roaming cancer cells within the body. That is why they do it frequently, to see if any cells are sticking together and hopefully catch that early. They don't use the word remission for melanoma. The term is NED, which stands for no evidence of disease. If there is disease we can't see it. We are big fans of NED.

Why so stressful? You aren't allowed to exercise the day before (and what other stress relief is there, really, for a girl who doesn't drink?). All the apprehension culminates in a fitful nights sleep full of bad dreams. Then the day itself is pretty intense. You are put in a room where they inject radioactive material (my brother the physics professor was kind enough to point out the amount is more than what they were exposed to in Japan, so who knows what the tests are going to do to me), give you a warm blanket, dim the lights, and tell you not to talk (no on is allowed in the room anyway) or read, or do anything for an hour so the tracer can get to where it's supposed to go. And this is when the mind goes crazy. If you could distract yourself before, there is no way to do it now. When that hour of torture is over, don't worry. Just 45 minutes of literally not moving a muscle as you lay in a machine that clicks and ticks up and down your body and occasionally commands you to "take a deep breath and hold it."

And then we have to remember the time it takes to get the results. How fast the heart pumps and the body jumps every time the phone rings. And when the caller ID shows it's the hospital, how the breathing stops, the fingers cross, and you pray it's a nurse's voice and not a Dr.'s as you pick up and squeak 'Hello?'

Things really could go sour next week. My gut feeling? They won't. These tumors were so slow growing, I can't imagine I would have something only three months later. I think my body has been fighting this thing for 4 years, surely it is putting up a good front somehow still.

Even though I'm convinced, if you find yourself on your knees sometime next week, and happen to remember me as someone who could use a special prayer, I would love that. I know I'm not strong enough to go through this every 3 months on my own.

Tuesday, June 21, 2011

a toast

So far summer has been a huge success. There always seems to be a little difficulty in the transition to being home all together, all day. Although I like to think we have a pretty harmonious house, the oldest (10) has lately found it his job to make an argument over anything. Usually I'm up for the challenge. My logic against his. Game on.

But one afternoon it was wearing on me, as he fought with his brothers.

"James. (Insert lecture here). If you keep acting like this, this is going to be a loooong summer."

Glaring at me with defiant eyes, "Well I want this summer to last forever."

Game over. He wins.

Summer forever! What a fun idea!

So here's to a day on the lake, and a night in a tent. To the ice cream truck's song, and the cricket's lullaby. To the mountains smothered in wild flowers, and a baby's face covered in popsicle slime. To a hot afternoon, and a cold drink. To a game on the tramp, and at the ball park. To a picnic lunch, and an evening barbeque. To a long road trip, and a short nap.

Here's to all good things of summer! And to many, many more.

Tuesday, June 14, 2011

kindergarten cosmos

Last night, in the darkness of Luke's room he asked, "Is the future the things that will happen?"


Pause. "And the past is things that have happened?"


Pause. "And so what are the things that are happening right now?"

"That's called the present."

"Oh. The present." Pause. "So in the present you are laying with me in my bed."


Pause. "And in the future you will go away."

I imagined myself getting out of his bed as soon as he got sleepy and crawling into my own. "Yes."

Again a pause. And then in a sweet, matter-of-fact voice, "And in the future you might die."

Pause. "Yes." I didn't feel like arguing the point. And he did say might.

He gave me one his cuddly hugs and sighed.

"Or in the future the sun might blow up."

"Well...probably not."

"It might have already blown up in the past, mom, but we don't know that yet because it takes time for us to see what's happening from far away."

Physics, even at the kindergarten level, just doesn't make much sense to me. I wonder sometimes what kind of sense my kids are making of all these cancer events.

I hadn't talked prognosis with any of them, just told them of the possibility that the surgery would not make the cancer go away forever. Last month as we talked about my nephew's prognosis James perked right up. "Prognosis? What is that?"

"I guess it's like your chances of making it."

"So, what do they say about yours?"

"Well, about 20% survive 5 years."

"Oh, that's good! We can look on the bright side of that!" But his eyes started to blink quickly, and he turned away. Even a 4th grader (maybe especially a 4th grader) knows what 20% looks like.

I wonder how all this will look years from now when the present is the past and we are seeing what happened from far away. It should clear things up. Unless of course, it blows us up.

Thursday, June 2, 2011

about that prayer....

Bargaining is such a fascinating part of the grieving process. Four years ago I pleaded, Please Heavenly Father, I just need to get Luke to school. I won't complain, I won't expect any more. I just need them to be independent enough so that Josh can take care of them on his own.

It sounded like a good thing at the time.

Today felt a lot like the first day of kindergarten. Witnessing an answered prayer. Full of emotions. Full of gratitude.

So, let me set this video up. Luke loves a good joke. Especially if it's his. I see a little of my Grandpa Johnson in him when he throws his head back to laugh at his own witticisms. These last few weeks I have been trying to get out of him what songs he was singing for Kindergarten graduation program. He would not tell.

Josh recently went to Minneapolis and Luke asked me "Is he going to see the Lakes of Minnesota?"
"Oh! That's it! You are singing Proud to be an American!"
"No. Not that one."
A couple weeks ago Josh and I went to San Antonio and Luke asked, "Are you going to cross the plains of Texas?"
"See! That's one of your songs for sure!"
"No mom. Really."
So I started bugging him by breaking out into the chorus changing some of the words. He would insist he heard it somewhere and I was getting it wrong. Last night as I was putting him to bed, he couldn't take my version anymore and sang me the whole song, loud and beautiful. I have never been more proud to be an American.
"But how did you learn that song Luke?"
"Oh, Sam taught me."
"Because I was thinking that would be such a good choice for your graduation. Wouldn't that be the perfect song?"
"It would be. Too bad it's not."
"Don't you think a hundred kindergarteners singing that song would be just what a graduation needs?"
"Yes, but they won't sing it. I don't know why. It would have been awesome."

He kept a straight face, but there was mischief around the mouth.

Well, here it is. I am too busy putting on my best "you got me!" face to keep the camera still. Every time he thinks of the great trick he pulled off he catches my eye and smiles.

I've cut out the middle, but the whole thing was adorable (even cuter in the higher resolution you can adjust on the screen).

And because July is right around the corner, I am finding myself in negotiations again.

And Dear Heavenly Father,

Have I got a deal for You....