Archives for posts with tag: Scanxiety

During my last two walks, I’ve been keenly aware off my gait. I have attended to my footfalls, the way some of my flesh moves a bit from the impact of each step and how I can feel the strength of my muscles in my stride. My legs are curvy, solid, and strong. They support my weight and take me places, through noisy streets and peaceful ones, through rain and wind and through the delicious sunlight that cracks through the clouds during the fall.

I have been meditating on my steps. Since I began recording my walks at the beginning of December 2012, I have walked over 2500 miles, through seemingly endless medical appointments, seemingly endless reconstructive surgeries, through work and family life, navigating an ever changing life with a map that at times seemed etched with the lightest pencil marks. One of the unexpected gifts of writing this blog is that I am able to go back and see that despite the fits and starts and lack of linear progress, I am growing and changing, in mostly positive ways. I am moving forward on strong limbs.

The last week of September was Double-Scan Week. I had a diagnostic mammogram to follow-up on the “probably not cancerous” mass that was discussed six months ago at my routine screening. Dr. Bang informed me that it was 2mm and that it had been visible on previous mammograms. On the Friday of the week, I had my annual MRI. Typically I have one scan every six months, either an MRI or a mammogram, but not both. I could have spaced them out a little but then I figured I’d just drag on the stress of waiting.

The mammogram was a breeze. One of the things I love about my cancer center is that they always provide results during my visit when  I have a diagnostic mammogram. The radiologist was pleased that the mass had not changed shape or size and that it still had the appearance of a benign cyst. I go back in 6 months for follow up, a typical course of action for monitoring. The MRI was a bit trickier. For some reason, the imaging lab that I usually go to has closed abruptly and all services had to be moved to another imaging lab, nearby. They were very nice and for extra credit, their MRI machine was shiny new. I asked them how long it would take to get results and the tech told me that my oncologist would receive results that very day.

Saturday was a very nice day and I woke up Sunday in a very good mood. My husband and I took a ride to the mountains. Then it happened, the upsurge in anxiety that seems to come out of no where. My heart started beating fast and I was having trouble concentrating. “What’s happening to me? Oh yeah. Double Scan Week.” I told my husband what was happening. Unfortunately, he was not having a good day and was not as supportive as I wanted him to be. I find more and more that there are people who are just tired of my damn cancer. I don’t know if it is self-invalidation or invalidation by others or a combination of both. But I do sense that there are people in my life who are waiting for me “to get over it”.  Personally, I don’t think it is so bad that I have a little anxiety spell for a few hours.

It’s hard to get over it when there are physicians around who keep wanting to look at what is going on in my body through scans. I waited. And waited. I was not particularly nervous. Last year, I found my own MRI results on my electronic medical record. No news, tends to be good news at my cancer center. They usually jump into action if there’s anything that’s concerning or potentially concerning. I tried not to check online too often and each time, there was nothing there.

Yesterday, my friend, Julie asked me if I had gotten results. “No, not yet. Last time it took about two weeks.” She said, “Hasn’t it been two weeks already?” It had been a week and a half. I told her that I was not too worried but would give them a call on a day I was not seeing patients. I don’t like receiving news by phone. Who knows what I will be doing when they call? Julie said, “Okay, I will be impatient for you.”

I  don’t see patients on Wednesdays so I called my oncologist’s office this morning. I expected that if I were to get a call back today that Dr. Rinn would call me in the evening, as she has in the past. And I got the call at about 8:30pm. Due to the abrupt change in labs, the new labs’ reports have not yet been integrated into the electronic medical records for the cancer center. Dr. Rinn was apologetic about the wait. She told me that no abnormalities were found inside of my breast but they saw something on my skin. She asked, “Did you have a rash or something?”  “Yes, I had eczema on and below my left breast that day. I didn’t think to say anything about it.” She told me that she was going to tell the radiologist and see if they would be satisfied. Otherwise, I will have to go back in six months and have another double-scan week. It’s not the worst thing but it was a challenging week not to mention that after 3+ years of being a cancer patient, I am getting a bit concerned about all of the zapping and injecting I get for scans.

I am relieved about my news. I am also grateful that I did not waste too much time worrying and working myself into a tizzy. But I also felt a strong wave of compassion for my friends with metastatic cancer. They have scans so frequently, treatment so frequently, and have to wait for a living. Literally.

 

“Wise mind” is a mindfulness concept in the class that my family has been taking. Wise mind is used when “emotion mind” or “reasonable mind” get out of balance. Wise mind is, well, wise and validates both emotion and reason.

If you look back at my last post, you can see moments where either emotion mind or reasonable mind got out of balance. There is a mindfulness skill called, “ask Wise Mind a question.” No, I kid you not. The judge-y part of my brain has thoughts like, “That sounds silly and dumb.” Fortunately, I am really trying to learn as much as I can from this class so I’ve been able to keep Judge-Y at bay, for the most part.

On Monday, while I was lying on the ultrasound table, feeling fear, scary thoughts, and starting to try to reason myself out of them with arguments that now seem kind of ridiculous, I thought, “Wise mind, what should I do?”

Within a fraction of a second, I noticed that my heart was beating fast and started using paced breathing to slow it down. My heart rate is particularly responsive to breathing techniques so that helped settle me down considerably. It also gave me something to focus on, something in the present, which was much preferable to my worrying about the future.

“Wise mind, what should I do?” was a question that got me unstuck. It helped me shift my attention and thoughts, to cope more effectively, and to make my anxiety much more manageable.

I am finding, more and more, through my practice of mindfulness and the other techniques taught in this class that I am able to limit my suffering around scans to shorter periods of time. Another skill I used is called, “Coping Ahead”. It is not a mindfulness skill. Mindfulness is powerful but it is not always useful. Coping Ahead means identifying a stressful event that you know is happening in the future, identifying skills for handling it, and visualizing yourself successfully applying these skills (mental rehearsal).

When we covered this skill, I knew that my scan was coming up so I made a plan. To be honest, the plan was not perfectly laid out but I put many elements into place. I decided that the most difficult part of my anxiety around my scans was that I am irritable and on edge and end up getting upset with my family for no good reason. I have not only coped in a way that increases my own suffering but that of the people around me. I imagined what I would be like if I was not that way and identified the skills that would help me get there.

As it turned out, the actual scan and the hour or two around it, were much more stressful than I expected it to be. But I didn’t snap at my family. In fact, we had a wonderful weekend together.

When I wrote my last post, I was trying to convey the experience that many of us have as cancer patients. Although I have not had known cancer for nearly three years, I still consider myself to be a cancer patient. I don’t know if that will ever change. I wanted people to understand that. I also wanted people to understand that meaningful and joyful life is still possible, nonetheless.

There are aspects of my life that are scary. I feel my feelings. I think my thoughts. Some of you described my last post as “harrowing”. That’s a pretty intense adjective. I was a bit shocked by the reaction and then felt sorry for having distressed people. But if I really think about it, I was describing the experience of trauma cues and fears of being sick again. That’s pretty hardcore.

My writing and my mindfulness exercises help me put my terror in a transparent box, so that I can examine it, like a specimen. It is still painful. It is still scary. But it is a way for me to move forward without hiding from myself.

“Wise mind, what should I do?”

Live my life.

Every day.

My husband and I host Thanksgiving every year and although not at Martha Stewart’s standard, I like to make the dinner tables pretty. Sometimes, John sets the table with our day to day plates and I say, “No, use the good plates.” The “good” plates consists of the full set of Franciscan dinnerware that my mother-in-law generously gave to me years ago. They match. There’s a gravy boat. There are enough for our extended family crew of 16-24 people, depending on the year. Matching, rarely used plates for fancy occasions.

Today I had a mammogram. I scheduled it many months ago. I remember telling my oncologist’s scheduler that I needed a diagnostic mammogram. She called over to the breast imaging center and told me that I didn’t need a diagnostic mammogram. I was due for a screening mammogram. I said, politely with a tinge of anxiety, “But I’ve had breast cancer.” She talked to the imaging center again and verified that a screening mammogram was what my oncologist had ordered.

I walked into the imaging center. It is in a building that adjoins my cancer institute, where I typically have my appointments. The cancer institute also does mammography. This time, I was sent to the building that is part of the same medical center but not part of the cancer center. Even though I’ve been there before, I was disoriented, even in the parking garage. I don’t have the best sense of direction on a good day but when I am nervous AND underground, it is much worse. The parking garage was packed and although I thought I was following the signs, I knew that I was anxious and distracted when I saw the sign, “Alligator” to show me that it was floor A, for the third time. I was driving in circles. I snapped out of it and worked my way down to “Camel” where I got a parking spot, wrote directions to finding my car after my appointment was finished, and went on my way.

As I walked into the waiting room, I had a sense of unreality bordering on derealization, a dissociative state experienced by individuals with PTSD. The waiting room felt unfamiliar but I knew I’d been there. Then I say myself there, in my mind’s eye. This is where I had the diagnostic mammogram, the ultrasound, and the core biopsy that would establish my breast cancer diagnosis and refer me to the cancer center, nearly three years ago. “Hello, trauma cue!” Once I recognized the cue for what it was, I could at least stop wondering and start coping.

The funny thing about this is that one reason I felt uncomfortable and scared was because I had been “demoted” to a screening mammogram and to add insult to injury, had to leave the safe and familiar nest of the cancer center, to do so. Mammography involves compression of the breast tissue between plates. I’ve had all kinds of mammography, screening, diagnostic, and PEM the latter being the fanciest and as it was in Phase II trials back in 2012, was not covered by insurance costing $2000 out of pocket. PEM took three hours following a 24 hour no-sugar diet and radioactive dye injection. Oh, and did I mention that each picture takes 7 minutes, all 7 of which the plates are compressed? Oh yeah, I just remembered that the PEM tech is seated right across from your eyeballs.  But I digress.

I found myself in the waiting room thinking, “I want the good plates. I want the diagnostic mammogram.” Yes, I know, the difference between mammogram machines is not the plates. But do you blame me for thinking about the plates? (Ladies who do mammograms understand.) When I checked in, the receptionist asked, “Who do you want us to send the report to?” I provided her with the names of my physicians. Then I anxiously asked, “But I am getting a verbal report from the diagnostic radiologist during my visit today, right?” She verified that I was. Deep breaths, Elizabeth.

I changed into a gown and waited for the mammography technician. She soon greeted me and led me to the exam room. She was a very small woman, under 5 feet. As she was positioning the plates, I noted that she was about the exact right height for the job. She would not have to bend over at all to get a view of breast level for most women. I thought to myself, “Why do I notice things like this?”

She was skilled and efficient. I was lead back to the waiting room near the changing room. I waited. I was distracted for awhile talking to other women, waiting for their results. I answered some email. A woman called my name, a different woman than the mammography technician. I didn’t like this. She led me into an ultrasound room and asked me to partially disrobe, lie down, and wait for the diagnostic radiologist, Dr. Bang. She said, “He will give you the results and discharge you.”

“Uh-oh, there’s something suspicious on the mammogram.” Dr. Bang soon came into the room and introduced himself. He was a young Asian American physician with a nice smile and a professional demeanor. One of the first things he said was, “I see a 2mm mass in your left breast. It is probably a non-malignant cyst.”

My thought, “Yay, he’s being straight with me. He told me what was going on as soon as he could without being cold and abrupt. Hmm, but he also told me that he thought it was likely just a cyst. I hope he’s not one of those physicians who is afraid to tell the bad news. I hope this does not affect his judgment.”

He was very thorough, I must say. I looked at the images from the mammography. Besides thoughts to myself like, “recurrence”, I busied myself by noting how much less dense my breast tissue looked in the images than they had in 2012. As many of you know, having particularly dense breasts makes most of the imaging techniques difficult to interpret because water (the source of density) shows up as white, which is also the color that tumors look on the images. Density is reduced with age, as breasts take on more fatty tissue. I could see this change in myself, likely accelerated by my cancer treatment induced menopause through Lupron and over two years of taking Tamoxifen, which I will likely continue to take for nearly a decade.

I am a geek and a healthcare provider. I am very happy for this when I am getting a stressful medical examination. I can distract myself with wonder and fascination. I also joke with healthcare providers. This lot were pleasant but business like. Joking would not be a comfortable option. So I continued to practice paced breathing to keep myself calmer and to geek out on medical technology and to reflect on the the marvel that is the human body, post-mastectomy and all.

Dr. Bang was having trouble finding the 2mm mass on the ultrasound. I asked him if it was located in the part of my breast tissue that is still very dense. He said that it wasn’t and was in fact very close to the surface. Then I thought, “Oh, if the cancer is near the surface of my breast, maybe I can get a small lumpectomy. That won’t be so bad.”

I was also thinking about what the next step would be. Biopsy? Then I remembered that I had gotten a screening mammogram and that the next step is usually a diagnostic mammogram. However, in this case, I was given an ultrasound. Hmm. A memory flooded back to me. Cancer treatment is like giving birth. They tell you what is going to happen like they are invariable steps. But it’s not. There are rules of thumb that I can understand but the course of assessment and treatment can change. I’m not complaining. If I were cookie dough, the medical team could use cookie cutters to do their job.

Another part of my brain was planning who and how to inform people that I would need follow up assessment. Before, I was pretty sure that I didn’t have cancer. After all, only 20% of biopsies are malignant. Mammography has a notoriously high false positive rate. That is one reason that it is so widely criticized. Actually, the prime reason is that we keep getting the message in our culture that it is far more accurate than it really is.

After what seemed to be 500 years, Dr. Bang told me that the cyst had been present on my last mammogram but it seemed to have grown since then. “I don’t think it’s cancer.” He told me that he wanted to “watch it” and that meant having another mammogram in six months. In the past, I would have been hesitant to ask my “worry questions” but I asked away. “Will this be a diagnostic mammogram?” (“Yes”.). “Will it be a 3D mammogram?” (“Yes”.)

There is no cure for breast cancer. I have had a status of “No Evidence of Disease” since my mastectomy on 8/8/12, which was proceeded by two failed lumpectomies performed by a marvelous and kind surgeon. Three of my four invasive tumors could only be revealed after surgery. None of the imaging technologies, MRI, ultrasound, and three types of mammography that were used, found them.

I was diagnosed nearly three years ago. I have thought about cancer every single day since I was informed of the diagnosis. That is over 1000 days. I don’t want “the good plates”.  I wanted the black and white plates. I want the plates of definite “I don’t have cancer” answers.

Cancer has provided me with a daily lesson that bad things, really bad things can happen. And I have learned to live a happy and satisfying life in the last three years despite all that my family has been through, a significant amount that has nothing to do with my cancer. Something that a pathologist looks for in examining an excised tumor and the surrounding tissue is for “clear margins”. A clear margin is the amount of healthy tissue that surrounds the tumor. Larger margins are better than small ones and if they are too small, as was the case with my first two surgeries, more surgery is recommended.

The “clear margin” is not magical or 100% accurate but it is meaningful. It is more than a good sign. There is always the possibility of disaster or hurt at the center of our hearts. I try very hard to live in the present and at present my margins are clear.

Art, Science, Heart ❥

journals of a mature student nurse

Heart Sisters

For women living with heart disease

George Lakoff

George Lakoff has retired as Distinguished Professor of Cognitive Science and Linguistics at the University of California at Berkeley. He is now Director of the Center for the Neural Mind & Society (cnms.berkeley.edu).

KomenWatch

Keeping our eyes and ears open.....

Life in a Wheelchair

You never think it could happen to you!

4 Times and Counting

Confessions Of A 4 Time Breast Cancer Survivor

Nancy's Point

A blog about breast cancer, loss & survivorship

After Twenty Years Cancer Research Blog

Exploring progress in cancer research from the patient perspective.

My Eyes Are Up Here

My life is not just about my chest, despite rumblings to the contrary.

Woman in the Hat

Cancer to Wellness in 1,038,769 Easy Steps!

SeasonedSistah2

Today is Better Than Yesterday

Telling Knots

About 30% of people diagnosed with breast cancer at any stage will develop distal metastasis. I am one.

The Pink Underbelly

A day in the life of a sassy Texas girl dealing with breast cancer and its messy aftermath

The Asymmetry of Matter

Qui vivra verra.

Fab 4th and 5th Grade

Teaching readers, writers, and thinkers

Journeying Beyond Breast Cancer

making sense of the breast cancer experience together

Telling Knots

About 30% of people diagnosed with breast cancer at any stage will develop distal metastasis. I am one.

Entering a World of Pink

a male breast cancer blog

Luminous Blue

a mother's and daughter's journey with transformation, cancer, death and LOVE

Fierce is the New Pink

Run to the Bear!

The Sarcastic Boob

Determined to Manage Breast Cancer with the Same Level of Sarcasm with which I Manage Everything Else

FEC-THis

Life after a tango with death & its best friend cancer