Pet Scan Misery

I have a new date for my PET scan, August 5th at 730 in the morning. There is only one PET scan machine in the area, located at RI hospital, so getting an appointment takes a little time. This is why it is so frustrating my last scan cancelled, you can not get a scan rescheduled in a few days. I suppose it has to do with the fact that insurance has to have the opportunity to tell you that the imaging request by your doctor is going to be rejected.

Two days before my PET scan, I get a letter from MedSolutions. This is the group Blue Cross uses to inform you that your doctor’s request for testing has been rejected. I wasn’t surprised to see this letter, I was surprised at the timing. Only two days before my appointment. It informs me that you have the right to contest the decision made by their doctors, and explains the process appeal. This involves
either me or my doctor contacting the company, and re submitting the request,and the reasons why their decision should be over ridden. This might not be such a big deal if they gave more notice.

In my case, Dr.Safran had anticipated this, and told me what would happen, but I wasn't kept me in the loop on this. All I knew was that I needed to start prepping for the test 24 hours before hand, and at this point I didn’t know for certain if I would be having the test or not.

I tried calling the doctor’s office to see whether they knew anything. I reached an answering machine, and left a message. I work all day, so I can’t be focusing on whether or not people are calling me back. At the end of the day, I haven’t heard anything, so I call the scheduling department to let the know I received a rejection letter. It turned out that there was a mediation scheduled for earlier that afternoon at 12:15, but scheduling hadn’t heard the results of it yet. My appointment was not yet cancelled, and so as far as they knew it was happening until they heard from the mediation.

Before you can have a PET scan, there is a days worth of prep that needs to be done. There is a low sugar, low carbohydrate diet that needs to be followed for 24 hours before. You are also instructed not to do any exercise for 24 hours before. It seems to be pretty important you know what is happening in advance of the scan, so you can be ready to have it done. The fact that no one had notified me about whether or not it was happening was very annoying because of this. At this point, where there was a question mark, I was committed to doing the prep, but had I not called on Monday night, I not have realized it might be happening.

On Tuesday, I got up early and went for a walk before the 24 hour time frame started. I forgot to check and see what the breakfast suggestion was, but my breakfast is cereal and fruit, so it fell within their guidelines. I called the hospital to see if they knew the results of the mediation. I called a different line this time, and got though to someone right away. When I told her my situation, she sighed. "No one called you," she asked? "You need to know." There was a resignation in her voice which indicated this was something that happened more often than not. She had me stay on the line and went to check and see. The mediation was successful, and yes, I would be having a PET scan in the morning.

Having the scan was unremarkable, I got up early to get to RI Hospital first thing in the morning. Steven was away so I went by myself. At this point, I know where to go and what to do, so it is not a big deal going alone. I managed to wear clothing with no metal on it, stretch pants, sports bra, cotton tee shirt.

I forgot how cold it is in the waiting room and in the PET scan lab though. I could have used a sweater. when I asked the tech why a you are not supposed to exercise for 24 hours before this test, she told me that the cancer cells like glucose, which they give you before the scan.  This is why the previous days diet is low sugar.  Muscles that have been working will absorb the glucose rapidly, and can give a false reading in your scan.

She commented on the fact that they needed to keep the room warmer because shivering could cause false readings. I wondered why they didn’t offer blankets, because I didn’t think it was that warm.

Since it was was early, it didn’t seem like all of the staff was in yet, so the man who was running the machine led me in through the big lead door, turned the big lock on the door, and got me settled on the machine. He did offer me a blanket, which I was so glad about, because it is even cooler where the big imaging machines are located.

I didn’t feel like listening to music, instead, I listened to the sound of the machine. I was happy to close my eyes and drift away from where I was. My body was present, there was no reason my mind had to be.

Once the test was over, that was it, I was free. One thing I forgot to mention about the PET scan, no contact with small children for the rest of the day. Had I remembered this from the last time, I would have asked to be scheduled later in the day. Now, I needed to stay away from my job for the rest of the day. It was still early, but I decided to try and visit my friend Carol, from Fain 3, who had surgery two days earlier. I managed to get to her room at 9 in the morning without anyone questioning why.

Our visit was bittersweet. Things didn’t go as she was expecting, so she was upset. I was upset as well. It is hard when you are going along fine with your own treatment, and you know someone who is having a more difficult time. There are no words that can change the wrongness, or the unfairness of the situation. All we could do is talk and hug, and hope with all that we are that things will go better, and all work out in the end. When I left from our visit, feeling very sad.

It was only ten in the morning at this point, and I had the whole day in front of me, but of course, no plan. I decided to take myself out to lunch, with my new laptop, and try to work on a new post. I am so new at trying to figure out how to work my laptop away from my home, it doesn’t go too well. Also, it is lunchtime, and I don’t want to take up table space for longer than I should. I don’t stay too long, but only have a few errands to run before I have run out of things to do.


It is only just noon by now, and I know the kids at my house should be eating their lunch. I decide to go back home sneak upstairs, hopefully unseen.

Even though I am as quiet as can be walking into the house, as soon as I hit the first stair all the kids seated at the kitchen table turn and call my name. I wave as I run up the stairs. I feel like a teenager sneaking into the house with some kind of contraband I don’t want my parents to see.  I spend the rest of the day reading, and being quiet.

This is the card you get when they use nuclear medicine on you.  It is like a get out of jail free card. If you should set off an alarm at a post office or airport after you have undergone a PET scan, you can show them this card, to show that you are legitimately radioactive. My kids were disappointed I wouldn't go to the post office to try this out.

Hibernation: June 26th to the 29th

It has taken me nine treatments to figure out the best way to deal with folfuri is to sleep through it.  Not because I feel tired, but because it feels better. My body must be tired, because I close my eyes and fall asleep, but I don't feel sleepy.  I just feel major league crappy.  I don't need medicine, I don't need food, all I need is sleep.  Sleep four hours, get up for two, sleep some more.  The world can march on, just let me sleep.  I can sleep all day, and then sleep all night.  How is this even possible?  I can get through this because on Monday I will feel better.  Only this Monday, I don't.  I get up to start my day, but after a very short time, it is apparent this is not going to work.  I need more sleep.  I call in help, and go back to bed.  Finally, by Tuesday morning I begin the slow ascent back to feeling unchemoed.

On Friday, during my chemo session, the medical imaging department left a message on my phone.  It is very vague, saying only that my doctor has ordered a test for me, and I need to call back to make an appointment.  I don't hear this message until Tuesday, because I have been sleeping all weekend.  I don't know what kind of test my doctor has scheduled, because we didn't talk about any new tests.  I know I have my pet scan scheduled for Thursday, but I wasn't aware of any new tests.

I call back and reach the automated operating system.  It is very unhelpful.  It expects me to know what kind of test I am calling to schedule, but the person who left me a message didn't say what type of test I am supposed to be scheduling.  I press the number for the pet scan department hoping they can help me.  It turns out Blue Cross has refused to pay for my pet scan, so my Thursday appointment is cancelled.    They will let me have an MRI however, so I schedule one for Sunday, July 12, at 8am.  My appointment with Dr. Safran is on the 14th, so there will be time for him to get the results before I see him.

I put all of this out of my mind and get ready to enjoy the 4th of July weekend. 

Steve and I need to pick my vacuum up in Warwick right after I get done working on Friday.  It has been in the repair shop for three weeks and it is finally done.  If I don't pick it up, I won't be able to get it for another week, and I really can't wait that long.  With a sandbox in the backyard and lots of sandy feet and shoes in my house, it has been a long three weeks.

Since we were in Warwick, and I was feeling pretty good, but chemo hungry, meaning I needed food right away or I'd soon feel too sick to eat, I suggest we try Iggy's.   I'll admit to feeling kind of brave about this, given my last experience there, but I don't want to be afraid to eat someplace my family loves.  It turns out most of Warwick goes to Iggy's on the 3rd of July.  There are fireworks on the beach and people start to get there well before the sun goes down.  In the end we were brave to go there for a completely different reason.  The line to order stretched down the sidewalk past the playground and toward the beach. Having stood in this line before, we knew that it would go quickly, and decided to go for it. Steve parked the car while I got in line.  This line leads to a walk up window,  where you order, get a number and wait for your order.  Iggy's has been on Oakland beach for years, and they have a very good system.  It moves quickly, and since you are out on the sidewalk, there is plenty to see and hear, and before you know it, you have your food.

I was just getting to the edge of where hungry turns to sick when I was next up to to order.  When they called me up, a man stepped in front of me from somewhere else.  I politely told him where the end of the line was.  He looked back in amazement, as if noticing this huge line for the first time.  As he shrugged his shoulders and walked off, I laughed at his audacity, and my own as well.  Don't mess with someone who is chemo hungry!

Steve and I walked back to the car and ate our dinner.  It was the easiest and warmest place to eat.  And the chowder was everything I had hoped it would be.