Scanxiety Revisited

There are words universal in meaning in the cancer world. It doesn’t matter if they are spoken by an oncologist or patient. When one person uses them, the other understands. Cancer, treatment, mastectomy, radiation, labs, and scans are all very broad terms, yet they all have a shared understanding between people.

Scanxiety isn’t one of those words. Patients who get scans know this word well. I used it with a treatment nurse back a few months ago and it was unfamiliar to her. I didn’t make too much of it but I began to wonder if this was a term medical professionals didn’t use. Why would they? They are not the ones having scans. But if they don’t understand the word, they also don’t understand how many of us feel.

Scans came up too soon in my life again and I needed my port accessed. My phlebotomist shared with me that she had recently learned about scanxiety. She understood what it meant and how it could affect people. I was pleased someone who was not a patient got it.

I don’t know how many oncologists and treatment nurses are familiar with the term. I’ll do some informal surveys. If there is understanding and empathy around scanxiety, we are more human. We have feelings and emotions. We are not rogue cells, just patients, or subjects.

My scan team has always gotten it. I get the bigger MRI scanner. There’s a washcloth gently covering my eyes so I can’t see how crammed into that tiny space I am. Lavender oil is sprayed on gauze and placed on my chest so it can waft up. Music of my choice is played. It is just like a spa.

Not. But they try.

Scanxiety happened on my very first MRI oh so long ago. A massive dose of claustrophobia was more accurate. The techs could barely get me in the machine. I would have pushed back but my arms were strapped down. The immobility aspect also impacts my claustrophobic feelings. After that, lorazepam became my sometime friend, along with the other provisions with lavender and eye coverings.

Imagining the scanner as a protective cocoon works some of the time. I am safe. For a stretch of time, I am shielded from the rest of the world. It’s a cozy world just for me and no one else. I really don’t have to do anything but lie there and occasionally hold my breath. Do I feel like a butterfly after emerging from my cocoon? No. Maybe I’m one while in the MRI and then turn back into me when I’m rolled out.

Jumping to present day scans, I haven’t felt the scanxiety on the last few. On the last two, I was extremely hopeful for good results. Hope and excitement replaced anxiety. Those scans showed progression. I feel a numbness now about scans. There isn’t worry but there isn’t hope either.

Numbness has its benefits because I’m not feeling. These blasted machines are one more aspect of cancer life that has become routine like office visits and treatments. Yet, it isn’t natural for us not to feel. Being alive means we feel.

One reason why I’ve had scanxiety is due to reactions from the gadolinium based contrast dye that is used in the MRI scans to detect tumors and growth, or regression. Eovist is used for my abdomen MRIs and I’ve never had any problems with it. Multi Hance was used twice for bony pelvis MRIs. It was fine at first. I experienced worsening leg pain and muscular issues about four days afterward both times. I was hospitalized the second time with intense pain. Multi Hance contrast was the only correlation.

A radiologist came in to talk to me at one of my last scans because my story is so atypical. A third contrast agent could be used called Dotarem. The Multi Hance would be preferred for what the scan was looking at today, but they didn’t want to use it. Good news as I wasn’t going to let them use it. Eovist didn’t show these organs well so it wouldn’t do much good to use it. Dotarem was another choice, but I hadn’t had it before and no one knew how I’d react. Scanxiety momentarily returned. Another radiologist was consulted and they recommended Dotarem. I was willing to give it a go. It took 45 minutes for all of this to be decided, but I was pleased that I had a team of people working on this so I stay safe.

I had some leg pain in both legs a couple of days after that wasn’t there before. It could be muscle related, bone pain, or scan related. Eventually, it went away. I would be hesitant to receive Dotarem again.

Revisiting my scanxiety has shown me that people can view the same object very differently. I see the scanner all too emotionally even though I know it’s yielding needed information. I believe my oncologist and radiologist see it as an inanimate object incapable of arousing emotion. It’s a sterile machine in a controlled environment. Therefore the person being placed inside (shoved, crammed, stuffed) is sterile and controlled as well. Results don’t have emotion. Facts are facts and any feelings are nonexistent or unattached.

All this brings me to wonder what causes oncologists anxiety. I would love to find out. Understanding one another better would support better communication. Better communication leads to better patient care.

And if someday patients are offered a massage after a scan to relax and truly make the experience like a spa, I would support that added to my care.

Better Breathing and Your Nose

Breathing seems simple enough. I’ve been doing it my entire life and I haven’t stopped yet. It’s one of those innate behaviors we’re born with, thank goodness. And yet, I learned recently that I’ve probably been doing it all wrong.

Breath: The New Science of a Lost Art, by James Nestor, was a recent book club read. I talked about this book a lot while I was reading it to people who had not. I got some strange looks. When you ask someone out of the blue if they’re a mouth breather, a strange look isn’t that strange. Usually, they’d be talking about headaches or poor sleep. Nose breathing could correct these behaviors.

I am a recovering mouth breather. Nose breathing is becoming more natural.

 James Nestor is more than a breathing enthusiast. He’s obsessed. I’d go as far as say perhaps a nut. He has put himself through periods of mouth breathing to see his health deteriorate and then restore his health through nose breathing. The man crawled through Parisian catacombs to examine how skulls of a thousand years ago differed from those of today. He has spoken with others who conducted disturbing breathing experiments on animals. His experiences go well beyond anyone’s norm. The book also contains fascinating anthropological glimpses of our human development as breathers.

The premise of the book is that nose breathing makes us healthier. Not only would we experience gains in lung capacity and athletic performance, but we’d see benefits in other health areas. Nose breathing can lessen headaches, asthma, halt snoring, improve sleep, and makes other internal organs healthier.

One experiment in the 1990s demonstrated the effectiveness of bikers breathing through their noses. Bikers were instructed to breath only through their mouths as pedal resistance was increased. The bikers struggled and panted as 200 watts of power was reached. When the same bikers repeated it and switched to nose breathing, their rate of breaths per minute decreased. One biker was able to cut his breaths per minute from 47 to 14 even though the intensity was increased. I find that amazing. I sure could benefit from cutting my exertion in half and being fitter by doing so.

Breath is jammed packed with good science that is written in an easy narrative style. If you’re reading this post, you may be more interested in some of the recommended exercises to encourage nose breathing. Below are some of the techniques James Nestor included in his book.

Mini Breathholds

• This practice encourages breathing less.

• Nestor claims it can stave off asthma and anxiety attacks.

• Over time, it is also supposed to happen more naturally when running or doing other physical activity.

• Breathe normally. Exhale and hold for 5 seconds. Breathe normally for two breaths (10 seconds). Repeat for 2 to 3 minutes / about 10 rounds.

Box Breathing

• Use for calm and focus.

• Inhale and count to 4. Hold four. Exhale 4. Hold 4. Repeat for 4-6 rounds.

• You can change the size of the box to 3, 5, or 6 as you’d like.

Sleep Tape

• Encourages better sleep with nose breathing and mouth taping.

• James Nestor suggests 3M Nexcare Durapore durable cloth tape.

• Use a postage stamp sized piece of tape. Nestor says to tape it like a Charlie Chaplin mustache moved down over your lips.

Alternate Nostril Breathing

• Use to improve lung function, lower heart rate, blood pressure, and sympathetic stress.

• Cover right nostril with thumb, inhale through left.

• Cover left side, exhale through right.

• Inhale through right, cover right side, exhale through left.

• Practice alternating for 5-10 cycles.

Nose Songs

• Breathe normally and hum.

• Humming for 5 minutes or more a day increases the nitric oxide in your nasal passages which eventually increases oxygenation.

Breathhold Walking

• This practice increases carbon dioxide in the body which increases circulation.

• It will also help you slow your breath when running, biking, etc.

• Breathe in. Exhale all the breath. Walk slowly counting your steps.

• Stop counting and return to gentle nose breathing while still walking. Breathe normally and repeat after a one/two minute break.

These are just a few of the breathing methods included in the appendix.

Not all is rosy in my breathing world. My personal data is skewed by a slightly faster heart rate caused by my Taxol chemo treatment. It’s definitely an uphill battle to consciously try to breathe slower and breathe less if/when I try to run because a faster heart rate makes me breathe harder. I switch to mouth breathing and I can’t maintain a rate that high. I don’t know if it’s medically possible to make strides in my breathing and running while being on this chemo. I wind up winded and frustrated. As a walker, I’m in my zone. As a runner, it’s a bummer. I’ll keep working on it because the idea of working less to achieve more excites me. I’m tired of working so hard and not ending where I want to be.

The perfect breath is apparently a 5.5 second inhale followed by a 5.5 exhale. I’m not perfect. Never have been and never will be. My breathing won’t be either, but it will be perfect enough for me as long as I keep doing it.

So, are you a mouth breather or a nose breather?

Trauma, Cancer, and Hope

Trauma

A good friend spent part of her weekend doing some reading on trauma for work and discovered the acronym H.O.P.E. standing for the phrase Hold On Pain Ends. She knows I have tremendous faith in the transformative power of hope. Holding on and believing that all will be well again is a wonderful feeling and vision for healing.

Many people think of trauma as it relates to military personnel who return from active duty with PTSD. People who have been in accidents, suffered abuse, had violence directed at them, witnessed atrocities, been through disasters, lost loved ones, and have been through (or continue to go through) an illness also can be diagnosed with PTSD. Any negative event can cause trauma.

Cancer and Trauma

PTSD is a mental health condition that develops after exposure to a traumatic event. Cancer survivors have experienced their fair share of traumatic events. Painful and emotionally stressful tests, treatments, receiving bad news, hard emotions to process, and living with chronic or painful physical issues are possible sources of trauma. Looking in the mirror at a changed body, living with lymphedema, and having the pain of neuropathy are daily reminders for some people. Fear of recurrence may always be on a person’s mind. Some anxiety is normal and quite frankly unavoidable for cancer patients and survivors. When these feelings persist or worsen, it could be a sign of ongoing trauma. Symptoms may include things like nightmares, trouble concentrating, feeling fearful, guilty, angry, avoiding things that trigger bad memories, and loss of interest in people or activities you used to enjoy. Other possibilities may also cause these.

I believe seeking professional help is the best approach to address working through trauma. Sharing what is painful can help identify the root cause whether the pain is physical or emotional. Effective solutions can be tailored to a person’s specific needs. Speaking to family, friends, or support groups are other possible choices. Even writing it out can be helpful in sorting out what you think and how you feel as a pathway to ending pain.

Hope

My thoughts keep coming back to that acronym about holding on because pain ends. Hope is hope. How else can a person take an active role in feeling physically and mentally healthier? No official trauma labels need to be involved. Everyone has times where something painful is experienced. I am not a mental health professional, but nonetheless have a few thoughts to share for dealing with pain. I think of it as a way to Help Other People Excel. I can’t say that’s original. I also can’t find a source to credit.

Pain can be a teacher.

Sometimes I need to experience pain and sit with it so I know what not to do. When I’m sore, my body is often bringing something to my attention. I may need to rest. Maybe I’m doing a movement incorrectly. Possibly I’m using new muscles and my body is thanking me for using them but reminding me to do so gradually. I’m also being taught something if I experience emotional pain. Every experience teaches me something, even the ones I find emotionally difficult. You can’t ignore physical or emotional pain. Both get worse if you do. Listen to your body.

Grief is allowed.

You can’t just “get over” things. Just as with the grief when someone passes, many events can still be a passing of something and involve grieving. Again, just as with the grief when someone passes, it comes in waves. One day you are just fine with not working and having a flexible schedule, and the next day this very same thing has you in tears all day. Some insensitive comments leave you unfazed, and then there are others that you believe are beyond cruel that echo over and over again. Some grieve body parts. There are many things you “used to” do that now no longer exist. Those who have had cancer have lost a lot. There can be unexpected spurts of grief that come at the worst times. It’s normal. Allowing yourself time to feel feelings will eventually lead to more good days than bad.

Find a new focus.

Starting something new gives an opportunity to move forward with something different. Fresh starts have their merits. It could be a new hobby or interest. I have mentioned before that working out has turned into a positive focus for me. I also have more time to write. Maybe it’s something bigger like a new job, relationship, home, or city. Change may be exactly what is needed. If nothing else, change serves as a good distraction. Everyone needs a break from whatever makes life harder.

Exercise.

Here is my repetitive plug for exercise. Physical activity can help you see you are stronger than you know. This helps physically and emotionally. I have a long ways to go to make myself even stronger, but I’m stronger than I used to be. Exercise helps me feel more confident and in control. It makes me feel good. I feel less stressed. Exercise provides an opportunity for me to work on my inner strength while I work on improving my body. Finding and reclaiming power by moving is extremely therapeutic. Work with a punching bag is a very effective way to reclaim power.

Get outside.

The effects of being outdoors for me are similar to exercising. It makes me feel good and less stressed just like exercise does. Fresh air and nature calms me. Problems often sort themselves out as I spend time in the woods. My head always feels clearer. Maybe it’s because nature is grounding. If you do not have access to a handy outdoor source like a park, farm, or green spaces, something as small as a garden plot can give you the opportunity to dig, to let dirt fall through your fingers, to weed, to plant, and to watch something new grow. Container gardening has become very popular in areas where green space is limited. This is also a great option if you have some physical limitations. Sitting in the shade with a refreshing lemonade and reading a good book still counts as getting outside.

Forgiveness.

Forgive yourself for past actions. I have heard a lot of people say how important it is to forgive others, show universal love and kindness, speak positively, and have at least one good friend you can count on. All important. Even more important is to forgive yourself, love yourself, have positive self-talk, and be your own friend. I have been pretty hard on myself and now I am much kinder. I believe pain can end when we treat ourselves like we treat others. Each day is a new opportunity to treat yourself well with kindness and forgiveness. Reset every morning.

Believe.

Believe in hope. Expect the best. Hope begets hope. For me, things always come back to my unwavering belief in hope. One of my favorite hope quotes reads:

“When the world says,

‘Give up,’

Hope whispers,

‘Try it one more time.’ “   – Unknown

I love that the source is unknown. It somehow makes it even more appealing to me. It’s as if there is an anonymous and universal whisper that could be from anyone anywhere in the world. The whisper may be a gentle hush. I like thinking of it that way. I see it in the flame of a candle. I hear it when a bird sings. I feel it with good friends. I find it in some of my favorite places. You know where some of those places are if you know me well.

Here is one of my favorite places where I hear the hush. Can you hear it, too?

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Author Anne Lamott describes a hush as something sacred. Hope whispers softly and pushes us to keep trying. Hope as a hush is sacred indeed. Pain ends. Hope remains. It can replace pain and grow exponentially. I continue to listen to the whispers of hope.

Scanxiety

I have had more MRIs in my life than I can count. Some yielding good news that spots were getting more and more difficult to see. Others showed minimal growth, which medically was read as consistent and stable. Sometimes I stayed with the current treatment protocol and sometimes it meant beginning something unknown to me.

Almost every MRI for me brought on its share of anxiety because I have some degree of claustrophobia. Waiting for results also brings its share of stress. The machine itself is long and tubular with enough room to slide an average sized body in and out. It doesn’t look too impossible when I’m standing outside of it and plucking up my courage. Things change when the technicians strap me in, give me a panic ball to squeeze since they’ll be in a different room for the test, and roll me into the tube. Suddenly, I am alone. My vision is limited to sterile white and I can see only an inch or two above my face. I can’t get out on my own and that’s when the trapped feeling starts growing. The strapped in part is so unsettling for me. Breathing is going to be impossible in there, especially when I am to listen to instructions on when to breathe, hold my breath, and then relax. A contrast dye is shot into me that makes my heart and pulse race. It makes me feel a little sick, and then I hear the “take a breath” prompt. Sometimes I just can’t get it done in time because of my racing heart, which makes me feel like I’ve screwed up the most informative part of the test. Panic, panic, panic. I’m stressed out. It goes downhill from there. Much to my surprise, the test always gathers usable information.

I have heard from a few people lately who have been nervous about scans and various tests. I doubt how I’ve described things for me has lessened those feelings for them. Sorry. Others haven’t been reassuring or helpful either from what’s been shared. Instead anxiety levels have risen as “friends” have told them how awful these things are. Do they really feel this is helpful? Newsflash – it isn’t! Saying something is hard is honest. You can still be honest by providing a couple of reassuring comments.

My hope is something that I share about how I’ve dealt with scans, tests, etc. will be helpful for anyone with scanxiety. Scans have gotten easier with each passing one. I know that it’s going to be tough to catch my breath after the contrast injection and I can mentally prepare for it. If it takes me an extra second or two to start a breath hold, that’s what I now do and I don’t worry about it. The following are things that work for me, and they may work for others.

Tip #1: I like music piped in to relax me. This is a common practice. However, if music is unavailable I know what songs I can sing through in my head to pass the time.

Tip #2: I like a washcloth over my eyes with just a peeking place available so I still know where I am without having to be reminded the whole time.

Tip #3: Lavender essential oil on gauze placed on my chest provides enough aromatherapy for a calming effect. I suggest bringing your own if you are unsure if your facility provides this for patients.

Tip #4: Having the same technicians has a calming effect on me, too. My favorite tech actually hugs me when she sees me and that lets me know I am in a safe place. I also like a lot of communication and encouragement while I’m in the machine. It’s good for me to know when I’m halfway done and when I’m close to finishing.

Tip #5: Sometimes I try to reframe the overwhelming, closed in, trapped feeling with one where the machine is my own little personal cocoon where I am kept snuggly and protected for a short time. It’s a great place for prayers. I call on loved ones, spirits, and angels to be with me and protect me. Those are very warm and comforting thoughts.

Tip #6: It goes a lot easier if I take the time to have my port accessed beforehand than just settle for multiple arm pokes that are more like a hit and miss game of find a vein. Using my port doesn’t make my heart race or feel sick when the contrast dye is administered.

Tip #7: In general, the breath holds go much better if I count very slowly in my head until they are done. Some holds are short, some are up to thirty seconds. The long holds do get hard for me, but the counting lets me know that they have to be almost over.

Tip #8: Lorazepam. I have proven that I can get through MRIs without any extra drug help at all. I know I can do it if I have to, relying only on my other tips. The lorazepam relaxes me enough so I am both calmer, fully functional, and happier feeling in general.

Tip #9: I don’t find it helpful to tell people about upcoming scans. There are too many questions. It is so much easier for me to relax on my own before and after the test, and if anything needs to be shared later, later it is. There really isn’t a need to share when nothing really changes. If you get support from sharing scheduled tests with a lot of people, that is your choice based on the kind of support system you have.

Tip #10: Remember the goal of an MRI is to provide information about your health. I need the information – good or not so good – because either way it determines what choices are best so I can maintain a healthy lifestyle. My mother wasn’t open to MRIs and many other tests because of claustrophobia. I believe there also were other fear based and avoidant based thinking happening. Not knowing sadly didn’t work out well for her. I miss her terribly. She and I have many similarities, but as hard as it is for me, I have to get the tests so I know what’s what.

I know what to expect after so many of these. This is a place where I’ve become very vocal about what I need – the music, the lavender, the washcloth, the encouraging words and announcements throughout. I always take extra good care of myself afterwards, whether it’s a treat on the drive home, or a long walk where I can decompress and appreciate being free from the MRI machine.

All these scans would be a much better time if I could find a way to make sure every scan provides the kind of results I need and want. In the meantime, I have found a way get through them with less dread and a little more ease.

Scans are just one example of what causes people anxiety. Everyone has something that they find difficult to do or causes them to worry. Anxiety is often worse than the event itself. After you’ve done it, you realize it wasn’t so bad after all. Maybe you’ve even developed a few hacks on your own that help you cope or dismiss your anxiety and stress entirely.

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Whether brought on by medical stuff or other anxiety triggers you have in your life, what helps you lessen anxiety?