Tuesday, April 23, 2013


I have purposely been avoiding scheduling Lily's PET scan. I admit it. It's no secret. It hasn't been for lack of trying- I tried a month ago to make the necessary calls and have not heard back- so I carry on.  It's birthday season and I selfishly wanted to celebrate my girls' birthdays with them, without the looming doom of a scan hanging over our heads. Last year I went ahead with the flipping scans- and well- see where that got us. 3 surgeries- lots of headaches and appointments and yet somehow bought me another year. Yes it has been a year. Had I chosen to do chemo- this past year would have gone a lot differently. I am fairly happy with the way it went. After all- it was on my terms and relatively normal. SO to wrap up the year in the spectacular normal fashion- the plan was to celebrate 3 girls' birthdays in one month's time in addition to a week long TDY of the husband, multiple concerts, events, activities, etc. So as I approached the final stretch last week- squeezing in a mandatory last minute parent meeting for the 8th grader's Rites of Passage ceremony- when the phone keeps vibrating- I see Tripler is calling. I figure- NOW they want to schedule the PET scan- well they will just have to wait- I am finishing birthday season. After 7- I get home and check my messages- it's from our endocrinologist- I completely missed out 3 hour appointment for Lily and Phillip that day and she is worried something is wrong- she will call back tomorrow. I can't believe it completely fell off my radar. I know I should have picked up on it when I refilled Phillip's insulin last week and it was the last refill. I feel horrible and yet somehow relieved because I hadn't had 2 spare seconds this week- so had I remembered the appointment- I don't have any idea how I would have fit it in- trying to fit it in would have caused tons more stress- and so hopefully first thing in the morning- I could call and apologize profusely and reschedule.  But the next morning was Kiera's track meet and it wasn't the most appropriate environment to call, so I waited. Kiera asked if I would sit with her and I did. Having a 13 year old really makes you appreciate when the 12 year old wants to be near you- I know these moments are fleeting and the days are numbered- so apologies would wait.

After the meet- we make a quick trip to walmart- possibly the 8th such trip in so many days- taking care of goodie bags and party items and presents.  Tripler and Walmart usually fill me with the same sense of foreboding and ironically neither one gets beans in the way of cell signal- yet somehow I am in the center of walmart and my phone rings and it is Tripler. Ugh- so I answer , it's our endocrinologist and I make my apologies- she doesn't seem too angry, just worried. She really needs to see Phillip- can we squeeze him in next week and try to get Lily in after her PET scan. When is her PET scan by the way?  I recount my inability to get a hold of a human and a call to one of my insiders revealed the order wasn't in the system- she says she will take care of it. SO there that is again looming. It also adds a few hours of collecting Phillip's blood sugar numbers and downloading pump data and that kind of fun to the weekend. It is a small price to pay to keep him healthy.

The weekend passes in a blur and like that, Birthday Season reaches it's conclusion. I am relieved and exhausted. Monday is to be the day of cleaning and catching up on housework- but a last minute email from school shows a need for parent help in Lily's grade. Plans change- I spend 2 hours helping 2nd graders- in the pouring rain- scrub and gut gourds that will become ipus for their May Day celebration. My hand begins to swell- whether due to rain or overuse- who knows- one of the minor side effects of having a few lymphnodes removed but I know I have to take a break before it gets worse. This upsets me- I know I have to take care of my body and listen to it's limitations- but I don't like being limited. SO I head home and crunch the diabetic's numbers. He's doing pretty well- he's at least taking his blood sugars more regularly. We still have some highs and some lows and tighter control can be achieved- I can now predict how our doctors visits will go. I print out the 14 pages of blood glucose numbers and insulin doses and highlight the highs, lows and any areas of concern.  When the boy gets home- I will go over the numbers with him and we will discuss areas that we can do better.  It's time to get the girls. It was a day "off " for Phil- which meant he worked from 8-2.  I get a message from him and a text. Hmm either he's going to be late(likely) or something is up(likelier). It turns out he got a message to schedule Lily's PET scan. I get off the phone and call to schedule while I am waiting for Bella to get out of Hula. Kiera and Lily jump in the car. I look at the clock- 3:30- only a half hour to make the call- probably not a good idea to wait til tomorrow. They have an opening on Wednesday. THIS Wednesday? They had a cancellation and can squeeze us in. The catch- I'd have to get Lily a physical by 8 am on Wednesday. I laugh- it's 3:35 on Monday- I won't even be able to get a hold of a human probably by 8 am on Wednesday not to mention having to reschedule Phillip's appointment or taking him to Lily's scan and dragging sedated Lily to his appointment- uncle- what's the next available? Next Tuesday. Ok- let's do that.  I call to make the physical- it's now 3:55- I don't expect to get a human 5 minutes before clinic closes- but I do. She can squeeze Lily in tomorrow at 3:40. Ironically we would have been able to do the Wednesday slot- but back to aforementioned scheduling conflicts. It is tempting to try and knock 2 birds out with one trip. Especially since I know the next week will be filled with scanxiety- the moments of panic as the fear of potential catastrophe might be revealed. But I choose to spread the stressful wealth over multiple days.  

When I get home- Phil is there working on his May schedule bids for days off. I am just happy he has the potential for days off again and a little schedule flexibility. May is a busy month of kids activities. I tell him the scan plan and he gives me that look. You know I am off the island that day? I look at the calendar- the 30th is empty- if it's not on the calendar- it doesn't exist. I write in 10am PET. I shrug. We both know we have a horrible track record with scans, injuries, etc when he is gone. The doom cloud settles over my head.  It is what it is.  Do you want me to stay? I am trapped between reality and superstition. Common sense says his presence will not change the outcome of the scans- but superstition overrules that with experiential data. I can handle it- the only other option is Wednesday- which he has a check ride on so technically he is off the island then too- or putting it off until June. It's time- this journey started in November with strange stomachaches. It's now been months since the MRIs. As I tell everyone else when facing scanxiety- it could reveal something bad- by not scanning- it doesn't make the bad go away. It could also reveal nothing and then you have a couple of months until you have to deal with scanxiety again. So fingers and toes, knees and elbows crossed that insomnia and scanxiety are the worst things we face in the next week.

No comments:

Post a Comment

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)