“Scanxiety”

I had made big plans for this week. I was going to spend it thoroughly cleaning the house- top to bottom; the pre-winter/ holiday douche and organization.  Then in a ‘smack myself in the head’ way- I remembered- or recognized- what I was doing!

We have all heard of people “nesting” when they expect to have a baby. They clean everything in sight, organize, wash clothes, wash floors, then wash everything again! Did you know that parents of children who have had cancer do the same thing prior to scans? Trying to get all these chores and projects done, in case you get bad news on the scan and you end up knee-deep in the trenches of cancer-warfare.  You brace yourself, so the news wont hit you so hard, so you’re prepared to fight through that hell again. You have the mental list of who you will need to call, what you will need to do, who can help, how it will effect siblings, school, your lives! All these thoughts plotting, planning and churning.

Jacob went on July 19th for his first round of post chemotherapy scans. He had an MRI of his kidneys done, and a Chest CT, both under anesthesia. I had been nervous about having those done- but the wait from getting the scans done- to learning the results was absolute torture! I was a stressed out disaster the 3 days prior! To the point I was having nausea, my hands were shaking, I had less than zero patience with the kids, couldn’t concentrate, couldn’t sleep in spite of being exhausted,… nightmare!  I knew I would be nervous about it- but I was unprepared for the anguish that went along with the “Scanxiety”!  My mind kept running through the game plan if the scans showed new cancer growth- What would we have to do? Get the mediport put back in, start new chemotherapy treatments, blood labs, The fear of facing that again was paralyzing!

I kept telling myself that the next scans will be easier. I won’t freak out again like last time! Everything will be just fine this time!! I mean, we had a kidney ultrasound done a month ago- if there was something noticeable – well- we would know! So I keep telling myself that this time will be just standard check- and there will be “No Evidence of Disease” aka: NED- the best words a cancer patient and parent can hear! In a way this time WILL be easier! Jacob is going on Friday, (which would have been my mother’s 67th birthday), to have a chest x-ray and abdominal ultrasound done to check for any new tumors, or problems.  Then we will go over to the Children’s Cancer Center, to meet with our oncologist that same day! Thank goodness I wont have the 3 days waiting in between this time around! (I have the pleasure of that again in January though!)  Jacob has to have these done every 3 months. They alternate between the MRIs and CAT scans with the X-rays and ultrasounds, to try to limit the amount of anesthesia and toxin exposure that he will receive. He is in a higher risk category for having a relapse, or metastases from his previous cancer, and due to his Hemihypertophy; a genetic defect that predisposes him to developing kidney, adrenal and liver cancer.  So I guess you can imagine why I feel a little less than optimistic when we have these.  It’s hard not to go to those dark places, where we fear the scans will reveal new cancer growth.  When a cancer patient stops getting chemotherapy, or radiation, when their hair grows back, it’s easy for the world to go back to ‘normal.’ People stop checking in, the name is removed from the prayer chains, the cards, and support dwindles away. But for us, the war continues, it’s just silent, creeping and lurking in the shadows, quietly waiting to turn our lives upside down again. The anxiety and fear is always in the back of our mind! So we cope the best way we can, we try to push these thoughts away, stuff them in a box, and then we get really busy, scrubbing baseboards with toothbrushes, and filing our recipes alphabetically! OK, that one is STILL on my to-do list! ;)  But don’t worry, I really do feel that everything will be fine this time! In the meantime, I have rafters to dust, and windows to wash!

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2 Responses to “Scanxiety”

  1. Homa October 23, 2012 at 1:52 pm #

    There are so many situations where I use “nesting” as a proxy for trying to gain a feeling of control when everything seems out of my control, I hadn’t thought of it in the context of knowing that when a result comes back there may not be time or the like to take care of the basics. I also clean after something bad happens just as a way to process. I will be thinking of you this week, Jenny, if we were in our food allergy mama cul-de-sac I would come over and make you put your feet up while I do some of the cleaning though!

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  1. April 2013 Tests and Results | Multiple Food Allergy Help - April 26, 2013

    [...] past few weeks! Jacob had his 1 year post chemotherapy oncology scans done. I was a wreck with Scanxiety prior to getting the test results. He had an ultrasound done on his kidneys and a chest CT which [...]

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