If you’ve read Everything Changes, you know the saga of my sudden onset cancer claustrophobia. Since cancer, sitting on an airplane feels to me like the Star Wars trash compactor scene. I’ve chalked it up to either post-traumatic stress disorder, or the anxiety that can be a common side effect of the high doses of thyroid hormones I’m on.
Over the past couple of years xanax has become my flying friend. Without xanax I could not have flown to my San Francisco surgery, checks ups at Memorial Sloan Kettering, or to see my friends and family. I also only fly Southwest because they are super sweet and let me sit in the front row where I can see the door.
But something totally odd has happened: with no explanation, my raging claustrophobia has quite suddenly simmered down. I’ve flown xanax-free on my past four trips to speaking engagements and book parties.
This past week I was speaking in Pittsburgh. I woke up one morning on the trip and in that limbo morning mind state of half-dreaming, I confused being wheeled into surgery and getting anesthesia with boarding a plane and flying. For just a moment, the two were the same. I started freaking out, but my phone rang and woke me up. It was amazing to see my two fears come so head to head in my mind.
I am thankful that my mind is chilling out. And, I’m really curious about the mystery of what has made this go away. If I knew, I’d share my secret. Have you developed any fears or anxieties since your diagnosis, or as the result of any other illness or trauma? How have you coped with it? Has yours ebbed and flowed? Ever suddenly receded like mine? Does anxiety ever hinder your daily activities?
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
May 26th, 2009 at 4:34 PM
k,
this article called my name!! :) loud and clear!! yup, major anxiety after cancer. just now, 5 yrs out, i am finally able to not think that everyone I love and their dog is going to get cancer. i definitely noticing it ebbing and flowing…like right before my wedding, when i thought that life was too good and that the other shoe was just about to drop. (actually went to go see a psychic on top of a confirmatory blood test to ensure that no, my cancer would not come back right before the big day) ha!
thanks for writing about this! you rule, k!!!
May 26th, 2009 at 4:40 PM
Great post, Kairol.
May 26th, 2009 at 4:54 PM
I developed a fear of flying in my late 20s/early 30s. Initially I attributed it to flying in and out of the Arabian Peninsula performing my military duties. Then theory went by the wayside when I realized that I had been flying for years and it truly did show up suddenly. Xanax was also my friend for about 5 years. Recently, I have been able to fly without it although I still experience some anxiety. I was told and believe that ultimately it is a control issue. As passengers on an airplane we have no control over how it goes. When I thought about it I realized that I lacked control over my life at the time I developed the anxiety. Having cancer reminded me again that there are many things I cant control, including how the surgeries go and how well my body responds to treatment and follow up medications. That in itself will induce anxiety about everything we can’t control….
May 26th, 2009 at 9:56 PM
For those of you who don’t know, Dana, who commented above, is the incredible woman in the final chapter of my book Everything Changes. I remember sitting on my living room couch talking to her about her fear that people she loved were going to get cancer and keel over. Our conversation has been coming back to me, as lately I have been thinking about that too. Maybe I am swapping my fear of flying for fear of relatives dying! I think that Shannon nailed it with the whole control thang. I have a great fortune cookie on my fridge that says: accept something that you cannot change and you will feel better.
May 26th, 2009 at 11:16 PM
I have brain cancer, and my first symptom was a seizure. Thanks to a tumor and surgeries I now have epilepsy. I was diagnosed 10 months ago we finally got my seizures under control (via medication) last month.
For months after my first seizure I was afraid of going anywhere or doing anything by myself. My doctor told my boyfriend that I was not allowed to take baths or go swimming by myself, and my driver’s license was suspended because I had had a lapse of consciousness (even though I wasn’t driving when it happened).
The intrusiveness of seizures, a side effect of my cancer, became the root of my anxiety. I was afraid to be by myself, but I had to be driven everywhere and missed my independence.
Hopefully I will be driving again soon.
May 27th, 2009 at 4:04 PM
My anxiety began when my first husband was killed in a car accident. And at the time I was working as an OT on a head trauma unit no less so I already had issues worrying about being out in a car! But after he was killed it was like PTSD. Then when I got cancer 7 years later my anxiety went through the roof. I started having panic attacks (which I probably had prior but didn’t realize that was what was happening) which I still have today. I wish I didn’t worry so much. Sometimes the anxiety is really bad but I have gotten better at being aware and trying to control it. I agree about the control issue. I too have anxiety with flying. Although I haven’t been on a plane in a few years I think when the time comes to hop back on one I will need to be medicated! And then there’s the dentist. I can’t even talk about that much less get myself to one. It has been way too long and it is because of my dental phobia. I have had to be medicated just to get in the chair. I had many bad experiences as a child and all throughout my life with bad dentists. Of course this time it is going to be detrimental to my health if I don’t get myself back there! That is where the anxiety just overtakes me. I have tried many times to pick up the phone and make the appointment and I hang up.
Anxiety is quite a bi***!
May 27th, 2009 at 4:35 PM
Sorry to hear about everyone’s killer anxiety stories, but I guess anxiety loves company. Cathy, I think you and I need to make a pact to call our dentists. I am way overdue but cannot bring myself to pick up the phone either.
May 27th, 2009 at 5:32 PM
Ladies, Ladies, Xanax and an IPOD with your favorite songs loaded up is the best way to go to the dentist. The xanax,self explanatory, the iPOD, drowns out the drill……..
Just make sure you get someone to drive you home!
May 27th, 2009 at 7:22 PM
I’ve just gone through the first wave of post GYN cancer treatment followups along with all the other routine tests I’d avoided and put off and other things for some un-cancer problems that cropped up, and of course - flu like symptoms that resulted in several sessions of long objects getting threaded up my nose … but I digress.
I felt fine and confident and anxiety free for the Pap test, the mammogram, the flu test, the sinus inspection, the routine physical, the knee XRay & MRI. I enjoyed my first routine colonoscopy prep with all the toilet humor I could muster.
Everything came back perfectly clear, no GYN or breast troubles, no flu, sinus infection basically gone by the time I could get an appointment, BP, glucose & cholesterol tests perfect (somehow I managed to avoid getting weighed) nothing wrong with my knee that a little PT cant fix (not even any arthritis) And not a single polyp in my shiny pink colon.
So why did I end up having a full and total blowout crying jag the evening after the last test - the colonoscopy - while trying in vain to catch up on some work? It lasted all evening through several phone calls. A week later I’m still distracted and sleeping more fitfully than I have in while, but my brother (who I’d never called to unload before) sent me some chocolate. It arrived today (surprise!) and it seems like its helping.
I almost feel like I’m finally starting process the shock and awe of a cancer diagnosis - even one that was by all reports early, minor, and almost certainly(95% odds) cured. My illness was so very very much less difficult than the vast majority of cancer people have to endure, I feel conflicted - as if I’ve come out of battle, I feel guilty all the time for not doing my job well enough and I need a break.
Then I think, Hey, it was just a bit of surgery 7 months ago, everything is fine! just get on with it.
Have I finally arrived at a point where I can actually process what happened? - sort of like crying in your stopped car after narrowly avoiding a horrible car wreck? I think I need to release, but I’m afraid of indulging too much.
May 27th, 2009 at 8:39 PM
What is this business Lisa about indulging too much? There are no cancer police to come out and getcha, only you policing yourself. Why not let it rip and roar? You’ve got something in you straining to get out and that is real. Forget what other people’s cancer experiences are. You have had one of your own and it needs room to breathe. One of the greatest pieces of wisdom I learned while researching my book Everything Changes was in a fantastic conversation with Julie Larson, a CancerCare social worker who focuses on young adults. She said: Don’t compare yourself to other people’s cancer experience - instead compare your life before your diagnosis to your life after diagnosis. Sound advice. There is enough you have gone through without having to ration your processing. Listen to yourself, eat that chocolate, and cry when you need to. All my best! Kairol
May 29th, 2009 at 8:37 AM
Once again Kairol, you have spoken to/for so many of us. This post really resonated with me, but I never even thought of the post treatment/trauma link. I try to cope with some mindful meditation, the practice of which has been shown to be of great benefit to cancer patients and in dealing with the aftermath of cancer.
http://beyondbreastcancer.wordpress.com/2009/05/03/mindfulness-helps-post-treament-phase/
May 30th, 2009 at 10:44 AM
Just this week I addressed my feelings of anxiety with my endocrinologist and he attributed it to my thyroid medication. He said that the dosage of Synthroid I am prescribed can play with my emotions. I have been feeling calmer recently and it could be that I am on a lower dosage; I started at 200mcg and am down to 175mcg. Along with the anxiety, I have also been experiencing chronic dry eye syndrome and it feels like I am in a constant state of depression because of the constant tearing. Yesterday I had temporary eye plugs fitted in my tear ducts, and I am keeping my fingers crossed that I will get some much needed relief. I’ve been going to mass more regularly and that too has helped to calm me.
June 22nd, 2009 at 1:12 AM
As the caregiver for my husband who was diagnosed with TC in April, I wanted to share my own PTSD story to let other caregivers know it can happen to us too. It feels crazy to me that I have PTSD; I used to be a social worker who helped other people help through theirs. Even having being trained as a social worker and advocate, I’m surprised to learn so much about mental health from my experience. I’d like to share what I’ve learned and am trying to remember myself:
1. mental health is often uncontrollable. People don’t WANT to be depressed, anxious or have their lives altered by mental health issues. We can seek treatment and recognize when there is a problem, but we don’t have the skills to prevent these issues from coming up, just like cancer is not preventable or rational, no matter what society tries to tell us. no one knows our experience like we do, and no one can really know what it feels like to be in our shoes. I’ve felt so much guilt about being so “upset,” partially because my husband was diagnosed at an early stage, and partly because I am supposed to be the “healthy” and strong support person-and, to be honest, that’s how 95% of our friends and family have reacted. They care about us, but have focused on my husband’s physical health. I think my mental health and the trauma I experienced is very difficult for them to understand. They want to be happy and relieved that his treatment is “over,” that he’s “cured,” and not grasp the larger effects of this kind of psychological trauma.
2. many factors can affect how traumatic something like a cancer diagnosis can be: how old you were at the time, where your life was at the time of the diagnosis, how it affected your relationships, etc.
3. what stage the person with cancer is doesn’t necessarily take away from the grief or trauma felt by the diagnosis, worries about whether treatment will work, anxiety over the results, diagnosis, financial concerns, undesirable reactions and actions by “friends” and family, etc. Of course, I don’t mean at all that it is the same as a terminal diagnosis-I just mean that what’s important is what the experience means to US, not how we think we should feel or how we fear being judged by others for being terrified.
4. grief can be about losing many things—someone doesn’t have to experience loss of a loved one. I grieve the loss of my youth, feeling of Invincibility of myself and those I love, the direction my life was headed before this event, a feeling of security that everything I know won’t be altered or taken away from me.
So, basically, this is a plead for all of us to try to find compassion and realize that we are never really in each other’s shoes. And also, to share that it IS okay to be greatly affected by something like cancer, and all that comes with a diagnosis and treatment.
Sending warm thoughts to all of you…
June 22nd, 2009 at 6:37 AM
FANTASTIC comment Corey. When researching the ‘Young Adult Caregiver’ section of Everything Changes, I read a study showing that caregivers of oncology patients are at risk for the same kind of mental health issues as the patient. That is not so surprising, but the kicker is that the study shows while patients go on to recover from these issues, caregivers often suffer from mental health issues far longer than the patients, and most patients go on to recover from mental health issues while caregivers often do not. This is exactly why I wanted to provide so many resources for caregivers - it is imperative that you guys also get the help and support that you need. Your side effects of our cancer are every bit as real and important as ours!
October 31st, 2009 at 11:37 AM
Thank you all for these posts, especially Lisa. I was diagnosed with stage I breast cancer one year ago - had a lumpectomy, chemo and radiation - now I am left with anxiety, stress, self-doubt, and a constant pain in my chest that no one can figure out. I miss my old pre-cancer self and want to get back to that, but don’t think I can. I feel worse now than I did going through treatment. They shoud prepare you for this …my oncologist is only interested in getting his patients through chemo, after that, you’re on your own. It is helpful to hear that others struggle with some of the same issues.