Thursday, June 30, 2011

scanxiety

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.

18 comments:

  1. Alisa you've been in our prayers every day...you deserve each and every one! We love you!

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  2. I'm sure it doesn't help the case, but I have been feeling some scanxiety for you. I know I will say some extra prayers this week. I love you!

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  3. You and your family are always in my prayers. I wish there was something big enough to distract you from all you have been going through. Hoping for the best!

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  4. Alisa...we will for sure be storming heaven for you. We won't wait until next week though, we will start now! I have been really busy with God, we've got a good thing going on right now, at least I hope. He won't forget about you! Hang in there...that sounds really lame! Sorry. I can't imagine how horrible this will be.

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  5. Chalk up some more prayers from me.

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  7. Our prayers are coming your way!!!!!!!!!

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  8. Alisa- you have a way of expressing yourself so eloquently and to the point. I love reading your blog. We will keep your family in our prayers and thoughts this week.

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  9. We'll definitely be praying and thinking about you.

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  10. I think I made a mistake when I said that, Alisa. A PET scan is only(?) about 3 times the radiation dose you get during a year, but if it's a combined PET/CT(x-ray) scan that's when the dose is more than most nuclear plant workers are allowed to be exposed to. I hope I didn't add to your anxiety. I'm praying for you.

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  11. Thanks guys! Jon, it is combined with a CT scan for better imaging. So thanks for trying to make me feel better, but no luck.

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  12. I will be on my knees A LOT! Wish I knew another way to get rid of anxiety other than exercise. Too bad that word of wisdom thing happened.....Lots of Love and Prayers! Lisa

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  13. You are always in our prayers! Melanoma sucks!!
    Jeri and Scott

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  14. I will be on my knees and you (and your little family) will be part of every prayer. As I read your post I could feel the anxiety creeping over me. My heart goes out to you Alisa. May they find nothing!!!!

    I love you.

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  15. You a a big tropper and they will not find any cancer any more and you will live to be 50 or 80 and no more cancer. If you want I would love to take you to your apt. Your always there for others so let us help you.

    We Love you lots and will keep praying for you

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  16. We will definitely be praying even harder this week. Go to a happy place during your scan . . . Martha's Vineyard maybe? Or the Orchard House? Hawaii? Anything to ignore that machine!

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  17. Alisa,

    Here's something to hope for. For nostalgic purposes, I watched the very first episode of The Incredible Hulk television series from the early eighties that I used to watch every time I was at Grandma's. In this episode he discovers the reason that some people experience uber-strength. It is when they experience a high adrenaline rush circumstance combined with high exposure to gamma rays in the atmosphere due to circumstantial sun spots.

    Do you realize that you have been exposed to large amounts of gamma rays?

    So I guess what I'm getting at here is, if you turn green in some way... or if your child gets trapped under a car... or if someone is drowning and you feel the urge to rip down a redwood to extend to them... or if you see some bad guys robbing a bank and you unexpectedly chuck them into the next county... thank your cancer.

    Just sayin'....

    -Eric

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  18. If I could lay in there with you to keep you company, I would. But we might get all kinds of speculation. You are the top priority in my prayers. I love you so much. xo

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