Archives for posts with tag: fear of cancer recurrence

“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.

Recently I met with some parents to obtain background information as part of my assessment of their son. They are highly educated people, both with advanced degrees. They have three young sons, all of whom they speak of lovingly. The father charmed me with the fact that he calls his sons, “honey”. There words were measured and they described their concerns about their oldest son, his tendency at time to not to own his own actions, his quickness to anger, and his frequent use of exemplary verbal ability to argue with adults.

Despite their calm and professional demeanor, I could see the mounting fear behind their words. Their fear for their son’s happiness and safety in the world. We had had a chance to establish some rapport and I decided to take a chance on expressing an awareness of an issue that had yet been unsaid. “I can only imagine the stress that you feel in raising a Black son who has these difficulties, in our country.”

Both parents nodded vigorously and the father said with palpable relief, “Finally, someone gets it.”

I am not African American. It was chancy for me as an outsider to make the comment that I did. It was also chancy for me to use the term “Black” instead of African American. The former is more likely to be acceptable when used by African Americans, not by an outsider and further a member of a privileged race, such as myself. But I thought “Black” was a better reflection of their own thoughts and feelings about their son. I also know that due to my personality, I tend to be able to say things like this and they are interpreted in the way I intended. But I am still very careful. I will never know what it is like to be African American.

But I can try to understand the best I can and to be aware of the common challenges that African American families face. And my awareness must be more than an internal event. It needs to be linked to effective action. In this example, my action was communicating my awareness of the rational sources of their fears. These parents have three boys. The number one cause of death for African American males between the ages of 15 and 34 is murder. And one might think that the risk does not apply to these boys because they live in an educated and relatively affluent family. I think realistically, it may buffer this risk to a certain extent. However, even looking at my own life, I know there is a particular danger that cannot be eliminated. I have a lot of friends. A great number of them have advanced degrees. Two of my friends, both Ph.D.’s, have had murder in their immediate families, one attempted and the second resulted in the death by shooting of a friend’s brother, who was waiting in line to get into a night club. Both of these friends are African American women from well educated families. One of them even had an uncle who ran for president of another country.

There are many people who live with the cloud of potential catastrophe. We are often unable to fully appreciate it but we can do our best to understand.

I am awaiting the results of the routine MRI I had yesterday. I am learning to deal with the anxiety of these scans but I am anxious. My husband forgot about the MRI even though I’d told him a couple of times as recently as the day prior and had asked him to accompany me. His alarm went off yesterday morning at 6:30, his normal time to get ready for work. However, he was planning to go to work after my scan and it was not until 9:45. He was getting up too early to have remembered the scan so I reminded him and he came back to bed. My husband is more forgetful than I would like. But I understand that he is not doing it on purpose and further, he would have seen the appointment on his calendar. Plus, he doesn’t live in the perpetual state of Potential Cancer so there are some things he doesn’t quite understand about my experience as a cancer patient. Similarly, a close friend apologized to me yesterday for checking in with me about my MRI. He’d had quite a stressful day of his own and again, he doesn’t live in the state of Potential Cancer. Before I lived there, I didn’t really worry so much about my friends’ scans once they’d had no evidence for disease for a couple of years. The panic subsides. I don’t want my husband or my friends to live in the Potential Cancer state with me. I don’t wish that on anyone just as my friends with metastatic disease wish it for others. But the actions that come from understanding our situation are important.

As a world, we need to find a cure for breast cancers. But as individuals, we also need people in our lives who have an awareness of the unique stresses of being a breast cancer patient who are also able to convert their awareness into emotional support. You,  friends and family, may be helpless to prevent recurrence or to cure a loved one’s active disease, but you can provide emotional support. You can make living in the Potential Cancer state or the state of Perpetual Cancer more bearable and less lonely.

Perhaps it would be helpful to explain to you what scans mean to me. A clear scan means that I can live another six months with “no evidence of disease”. A clear scan to a person with metastatic cancer means that they can live with “no evidence of progression”.  If my scan shows evidence of cancer, I will go into the fast paced chaos of not knowing and having many tests, the perpetual “hurry up and wait”. If it turns out that I’ve had a recurrence, I will likely undergo a more aggressive treatment protocol than I did in the past and to undergo previous treatments for which I now appreciate the full impact having gone through them before. By the way, a lot of cancer treatment sucked. My family will suffer. My patients will suffer. I could go on and on.

I keep telling myself that the results of a scan, assuming accuracy, don’t tell me anything about myself that wasn’t true yesterday. I often tell my patients this about the diagnoses I give them. “You are the same person you were yesterday.” On myself, this is a hard sell. I am a clinical psychologist. Nobody comes to me unless they already know something is wrong. Something is not going well. There is a problem. I didn’t know I had cancer. I felt fine. There was no lump. Right now, due to my mental and physical health practices, I feel healthier than I have in years. But cancer can hide for  a long long time without someone even knowing something is wrong.

For me as a cancer survivor, it is surreal at times to realize that I can’t trust my own sense of my body. I can’t gauge my own health. My body can lie to me.  I try to be a very truthful person with myself and with others. Honesty and clarity are extremely important to me. This is hard.

Offer your loved ones your understanding and support. You don’t need to live with us and we don’t even want you to,  but do connect with us. And when the Pink wave  tells you that awareness is action and pink is helpful, put your money and volunteer time somewhere else. Somewhere that helps.

Gray and black clouds
hide the sky.
The light shines through
There is clarity above.

The clouds will burn off
maybe today
maybe tomorrow
some day, certainly.

I will see the sky
I’ll know if I traveled
during the quiet space
between dreams
to the terrifying place
the familiar chaos,
the Cancer Place.

This morning's sky inspired the poem, my first in nearly 20 years so be kind.

This morning’s sky inspired the poem, my first in nearly 20 years so be kind.

I have an MRI next week. I have them once a year as a routine follow up. In six months, I’ll have my annual diagnostic mammogram. Welcome to Breast Cancer Land. When they aren’t loading you into a noisy, rattling tube, they are smashing your boobs while having you hold the rest of your body in positions reserved for the less commonly read sections of the Kama Sutra.

I actually don’t mind the actual procedures so much. It’s the worrying and waiting for results. I don’t want to do this! I have all kinds of fun things planned for October! So I find myself thinking, “Maybe I should just reschedule my MRI for AFTER I do my fun things. Then if I have a recurrence, it won’t spoil my fun.”

This is a ridiculous kind of thought. I mean I could reschedule for November but then it would be, “What if I have a recurrence? It will spoil Thanksgiving.” Then Christmas may be spoiled, etc.

The fact of the matter is that there is no good time to have cancer. Right before scans, I find myself scheduling patients with the thought, “Hmm, I wonder if I will be able to finish that report if I find out I have a recurrence?”

When I was diagnosed with cancer, I can’t say that my life came to a screeching halt, because it didn’t. But major changes and upheaval occurred in order for me to get the assessments and treatments I needed. On the day I was diagnosed, it was a work at home day and I ended up cancelling two phone consultations with other healthcare providers. I worked on my reports the next day. It was a three day weekend and we were expecting my father-in-law to come stay with us. It was actually nice to have him there. He gave us a lot of support.

My life will stop when I die. A cancer diagnosis didn’t make it stop. I can’t juggle my schedule around the possibility that I will be worried and stressed. I am a planner but this is not one of the things to plan for, at least in the short term. I mean, I do think about the long-term. That’s why I exercise regularly, try to eat well, meditate, and go to psychotherapy. I am taking care of myself for the long term. I am preparing for the possibility of  a long life. And those things I do for the long term, make me feel better right now.

This is my gratitude week. I had an idea in mind when I planned this but I have not quite followed it. Instead, I have gone according to what I wanted or needed each day. Today, I feel like I want to do something different with my anxiety.

I trust myself to do what I need to do if my cancer has returned.
I appreciate and feel deep gratitude to my friends and family for holding my health in their warm wishes and prayers.
I appreciate my access to excellent cancer treatment.
I am grateful that although my breast cancer surgeon has retired, that there are a number of excellent remaining surgeons at my cancer center.
I appreciate my healthcare insurance.
I am grateful to my husband because I know he will drop everything and come to my MRI appointment next week if I ask him to do so.
I appreciate my daughter’s resilience in the face of my health problems and her tenacity in life.

I love living.
I am alive until I am not.
I will do my best to live accordingly.

One of the things I like about my camera, is that I don’t have to change lenses. It is a point-and-shoot, not a fancy camera. I find that I take the best photos when I am actually carrying a camera. This sounds silly but my little point-and-shoot fits into my purse as well as into the zippered pocket of my hiking shirt. (Yes, there is such a thing and I wear it over a t-shirt or around my waist.)

My camera has one lens and because of this it is much lighter. But I can’t see as much with it.

In my daily life, I feel that I am constantly changing lenses, the way I see the world. Sometimes, it changes so quickly that I can’t get a good view of anything, just constant changes, blurs of different colors and no definite shapes. These are very difficult days, among the most difficult. It is on these days that I feel frozen for anywhere from a few minutes to a day or two.

I added a cancer lens to my bag a couple of years back. Before the diagnosis, it was a general purpose lens, called, “bad medical stuff that is unlikely to happen but I get it checked out just in case”. And yes, I knew about the one out of eight figure for breast cancer in U.S. women. That’s still the minority and that’s a lifetime incidence, too. The percentage of cancer diagnosed at age 46 is considerably lower.

Then I found myself at age 46, diagnosed with breast cancer and having what would be revealed as four small invasive tumors, of low grade, meaning that tests estimated them to be relatively slow growing.

The cancer lens puts cancer at the center of view when it needs to be there. For me, it was the time of active treatment, which also coincided with continued assessment through scans and pathology reports, the latter occurring after each of my three cancer surgeries.

Now I am considered a “survivor” and  my cancer lens keeps the possibility of cancer in the periphery. I have been told that I have excellent peripheral vision, both literally and figuratively.

My energy continues to return. There are so many legitimate reasons that reduce the energy of a breast cancer patient, chemo, oral medications, repeated surgeries, stress, working to make loved ones feel better, etc.

The cancer lens is also one of those things that can wear us down. Thinking about cancer, every day, even if only for a moment. I see many women worn down by the fatigue of cancer and I believe that this is a very real part of the burden.

The cancer lens can also bring things into finer focus, though. The preciousness of life, the motivation to treasure moments and to appreciate them. This is where people get into this whole, “cancer is a gift” thing. And yes, I agree that it is not a gift. But having a life threatening illness forced my hand to cope with my life and take care of myself better. The way I have dealt with cancer, by and large, has been a gift I have given to myself.

This week, I’ve had a hard time with anxiety, despite the fact that I am on vacation.  I am somewhat disappointed with myself, to be totally truthful, but I am working toward acceptance of the fact that I am a very anxious woman at times and this is one of the times, right before the beginning of a near school year and my daughter’s birthday, when the business of my life can overwhelm me.

My friend, Nancy, also a psychologist and a breast cancer survivor, spent a few hours together earlier this week. We spoke of our friendship. Nancy remarked that even though I have dealt with some heavy problems as a parent and a person, she does not worry about me the way she might worry about her other friends. I actually feel the same way about her. Nancy is very smart, very kind, and very real. She is a very clear thinker. Most of the time, I think I think very clearly, too.

Clarity is a powerful tool.  Clarity means seeing things head on, the possibilities and the certainties. It is at times frightening, at other times just the tool needed to dig through a very deep problem, and at other times, absolutely liberating.

I am real. Sometimes that is hard for people, including me.

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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).

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