I wrote a piece entitled “Scanxiety” last year on the same issue; however, this one is slightly more developed and delves a little more deeply into the issues and my thought processes.
Treatment for cancer – as with many areas of medicine – is a highly individualized science. There are many different subtypes of cancer and different oncologists have different protocols about how they treat and follow up with their patients. Within my group of cancer friends, even those of us who have the same doctor have different medications, appointment schedules, and testing/imaging depending on our situations. One of the super fun things about cancer is that it can always come back. There is no cure. Remission is even debated as a term that is scientifically accurate. The current vernacular is “NED – no evidence of disease” Some doctors do not recommended follow up imaging unless you have a symptom while others order tests as a matter of course.
My particular oncologist, for my particular case, usually writes orders for me to get scans once a year; although if I were to go to her with a worrisome symptom she would order further testing immediately. I am both grateful for her thoroughness and wary of the idea of looking for an issue I might not know exists. Scans cause me a tremendous amount of anxiety and worry, both in the days leading up to the day of the appointments , throughout the appointment day itself and in the subsequent period of waiting for results.
When I was initially diagnosed. and later to determine the success of my treatment, I had what is referred to as a PET/CT scan. The “Cadillac” of scans, this test can assess both bone and soft tissues/organs in one fell swoop. Because the cost of a PET/CT is prohibitive, often insurance companies will not pay for it unless a doctor can exhibit a true need due to symptoms of disease. So for the past few years, for follow up purposes, my doctor has ordered two tests – a bone scan and a chest/abdominal/pelvic CT scan. Although not as detailed as a PET/CT, any signs of metastatic disease present in either my bones or organs should show up on these tests. A bone scan is more detailed than a simple xray and the CT shows areas in major organ that could be a concern. The first few times I would have the tests and then have another appointment a few days later with the doctor to discuss results. Thankfully, and thanks to technology and results being available more quickly, the last couple of appointments I have managed to have both the scans and get the results the same day.
From the time I get an appointment scheduled for scans/test at a routine doctors appointment, that date is imprinted on my mind and in my head like a graphic image of a calendar with the date circled in red. My oncologist’s office gives a paper copy of scheduling and test prep instructions and I fold it in half and hide it in the back of a folder I keep on a desk at home that contains bills, papers, receipts, etc.. My appointments are usually made about six months out so, for a good while, the appointment is truly “out of sight out of mind”. But I am at heart a planner, and as the date approaches and I am filling in my calendar for the months ahead, the feeling of ennui sets in.
I can’t say that I have my tests done at a particular time each year – last year it was at the end of February and this one is the first week of April. But I have mental games I play that will delay me thinking of scan day…this year it was the fact that had Spring Break vacation to look forward to. All of the time “after Spring Break” was a foggy period with no dates or worries. My scans were “after Spring Break”. March came and went, vacation was over, and all too soon “after Spring Break” had arrived and with it the countdown to the dreaded “Scan Day” – the doomsday of my imagination. April 3rd was only a week and a half away and the intrusive thoughts began.
Let me explain…. I am moderately obsessive compulsive. I am not as much of a germaphobe as I used to be – although I wash my hands far more often than is necessary and have an extreme reaction to the use of any kind of chemicals or toxins. I don’t go back and check the locks on the doors – much – and only sometimes go back to make sure the curling iron/oven/dryer is turned off. Ok, so maybe I have to stop the gas pump on either a 2, 4, 5, or 0 when pumping gas. But the most difficult trait of my particular brand of obsessive compulsive disorder for me is intrusive or disruptive thoughts.
You would think after all these years I would have delved more deeply into the reasoning behind and developed coping mechanisms to deal with these things but I really haven’t even scratched the surface. From the time I was in elementary school and heard that “Doomsday” was coming in the early 1980s to innumerable heart racing sermons on the End Times (I was sure to be “left behind”), to fears of AIDS (via casual contact) as a teenager, to the terror of something happening to my children once I had them, I have always had an issue with my mind working overtime presenting various scenarios over which I had little to no control. Thoughts would intrude and if I could not reason out a solution to a given situation, they would just recur over and over in my mind. Logic did not help because my brain is wired in an illogical manner. And for some of the more other-worldly religion based issues, there wasn’t any answer or solution I was ever going to get in this life. So, I coped; I managed to compartmentalize my fears and worries and keep them in a nice little box in the corner of my mind for the most part until an event triggered me and then I tended to spiral.
What follows is the way my thoughts processed at various times in the week and a half before my scans….I journaled particular times and events. We returned home from vacation on a Thursday and had a pretty busy weekend so it wasn’t until the first part of the week that I really started dwelling:
(Edited to add: through all of this, I didn’t just sit and worry. I journaled, I prayed, I did some mindfulness exercises. These are just the thought processes that I dealt with in the midst of the chaos in my mind.)
Tuesday, March 27th
Tonight was the presentation and author meeting for Free State of Jones at UCA. I found myself actually getting involved enough in the storyline of the movie to not think about my appointment next week for a while.
Thursday, March 28th
Constant ups and downs. I am beginning to think that memories that surface on Facebook may serve as portents or omens. This afternoon it was a memory where I had commented on a quote about “the worst that could happen” and how I remarked about having cancer and how death wasn’t the worst that could happen but rather the thought of not living life to the fullest. So I am thinking that maybe that popped up to comfort me for some bad news that was coming. When in reality, that message was there and would have shown up regardless of what was going on with my life at any given time. If it is comforting, great, but if not, it doesn’t mean anything negative!
This morning all the way through the grocery store I could think of nothing else but the fact that my scan appointment is a less than week from today. And the more I try to rationalize the thoughts away, the longer they stay. I can’t explain them away.
I had a brief respite in the car this afternoon when I thought, I will worry about this next week. But it only lasted for a few moments.
I know the only way to deal with disruptive thoughts is to “Breathe In, Breathe Out, Move On.”
Sarah’s birthday was tonight and that was fun; but always always in the back of my head on occasions such as this is how many more birthdays will I see?
Friday, March 29th
Today went especially well with not much dwelling on things. I had a lot of errands to run and shopping to do. When I did find myself thinking about the what if’s I would just think I will still live this life I am living now, just somewhat differently.
Saturday, March 30th
I had moments today – many times – where I would think about the fact that tomorrow night is Sunday and next week is “the week” with “the appointment.” Tomorrow I will be busy enough but I will have it in the back of my head all day. Monday and Tuesday will be rough.
Sunday, March 31st
The respite I felt on Friday and Saturday is over. I feel anxious, irritated and like every moment between now and Wednesday will stretch endlessly. I am ok when I am totally alone and can distract myself with reading or watching something on television. But the times that I am alone and have to think or conversely have to interact with others while this is racing through my brain is very difficult.
I was up and down today and ended it decidedly down. I felt like I was keeping a secret by not telling my mom about the appointment and felt a brief relief after I told her but then felt like I failed by giving her a cause to worry.
Monday, April 1st
Work serves as a distraction but my mind still gets to work overtime. The current scenario is playing out a scene of Dr. Wilder coming into the room and saying in her soft spoken gentle voice “everything looks good” and me being so relieved and happy texting everyone…then a slightly less jubilant scene is her looking at my test results and saying “there was something that we may need to look more closely at…” and then my stomach drops, that feeling of icy dread fills my veins and the world gets sliced in the the two periods of before and after, yet again. There is yet a third scenario which may unfold where they don’t have all the results back yet. So why can’t I just play that first scenario and hold onto that? Because in my thoughts, that is almost tempting fate. And in my twisted head, I need to be prepared for the worst case scenario. There is a Michael J. Fox quote that says “Don’t spend a lot of time imagining the worst case scenario. It rarely goes down as you imagine it will and if by some fluke it does, you will have lived it twice.” No disrespect to MJ Fox but I live the worst case scenario a thousand times.
Writing is helping but I keep thinking I am going to get to publish this “after” – once I find out everything is ok. And if it isn’t? Well then I guess I can shrug and say “told you so…”
Tuesday, April 2nd
Every move I make is with the knowledge that tomorrow I will be getting tests which tell me if I have any evidence of metastatic cancer. Taking out the recycling, I breathed the cold fresh air and noted that the world would still go on, despite anything I learn. I listened to a podcast about mindfulness on the way to work trying to make some sense of my mind Seems like living in the moment isn’t conducive to all my psychoanalyzing. But it would be easier.
My fun mind games today have been imagining telling my kids and my parents and all my friends that my cancer has returned. Why do I do this to myself?
I’m past the point of reason – I can’t concentrate on anything. Started reading the boards at BCO and got sucked into that feeling of being a patient. Then reading statistics about recurrence and realizing that for all my periods of freedom after a good scan, it is always, always going to be there waiting. Fuck this that this has to be my cross to bear.
Drew up a playlist to listen to on the drive down to Little Rock. Just don’t have the stomach for the news and podcasts today. I added some traditional gospel songs and some contemporary Christian songs. Not my typical fare but I needed it today.
Nerves are pretty shot but I am trying to maintain control. So often I find at these appointments, my primary emotion is being angry that I have to deal with this. That this is my life. But I do. And it is. And so we go on.
(at CARTI after CT, waiting on bone scan)
Every fiber of my being is fighting the mental image of waiting for my 2:00 appointment time. I am trying to keep busy and trying to stay positive.
My computer died after this point. After my bone scan I handwrote “I’m done with the tests and I’m overwhelmed with anxiety about the results. Shaking, hungry, cold. I am afraid.”
The above entry was around noon – right before my hubby arrived. We had a sandwich at the cafe at CARTI and an endless two hours later, it was time for my appointment. I am not sure the title of the employee who took us back for my appointment (she was not a nurse) but she knew how apprehensive I was about my scan results and she told me that everything looked okay from what she saw on the paperwork but I had to wait for the official word from my doctor. The rest of the appointment is a bit of a blur….no evidence of disease is the only thing I really remember. My current treatment plan was discussed, plans for future appointments were made, and I even got a bonus prize of a new genetic test (it was a spit test – painless!)
So today, I face the world with a new lease on life. I have no evidence of the heinous disease which has claimed the lives of many of my friends. I happily proclaim to everyone that I am cancer free – for the moment. I am unbelievably grateful. I would like to think that had I had different news yesterday, I would be waxing poetic about living in the moment and appreciating every day, but I cannot in good faith say that is the case.
I am a work in progress, as we all are. And for today all I can say is that I am grateful that my cancer responded to treatment and, as of this moment, I remain cancer free. I have friends and family that still deal with this dreadful disease on a daily basis. Who live from scan to scan or treatment to treatment and have no idea what tomorrow will bring. I don’t know if my thoughts and reactions to dealing with this disease are normal or extreme. What I do know is that I have an incredible network of support of family and friends who sent me prayers and messages of encouragement through these last few days and for all of you, I am forever grateful.
Karri Temple Brackett
April 4, 2019