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Some people call October, “Breast Cancer Awareness Month”. Others call is, “Pinktober”. Still others call it, “October”.

I don’t like the commercialization of breast cancer with the commercialization of pink things, nor do I like the sexualization of breast cancer. I don’t like the commercialization of suffering or sexism at all.

I don’t, however, give Pinktober the same kind of harsh judgement as I did in the past. Part of this is because the pink stuff is decreasing. I applaud those that work to decrease it further.

Another reason is that my physical and emotional recovery from breast cancer has gotten to the point where I can even entertain the possibility of taking a broader view.

And oh yeah, I had two heart attacks.

An oh yeah, my husband and I have reared a brilliant, talented LGBT/Q daughter from age 13 at the time of my breast cancer diagnosis to her recent 20th birthday. Her life has been no picnic.

I actually forgot until just now that my dad died three months ago.

The main reason is that the broader issues of sexism, racism, health disparities, xenophobia, heterosexism, etc. have taken priority. These are my priorities and I am thankful to have the emotional and physical health not to mention financial security to be able to make these decisions.

Mindfulness is awareness. I didn’t make that up. That’s what it is. Mindfulness is an approach to reducing human suffering. I didn’t make that up, either. That came from the historical Buddha. He also talked about the main causes of human suffering as fear, hatred, and delusion.

Fear, hatred, and delusion.

There’s a lot of that going around.

As a psychologist, I’m going to tell you that fear is a basic human emotion, needed to keep us safe. But I can also tell you that our central nervous system gives us many false alarms about safety and how we respond to false alarms can certainly cause human suffering. It can also underpin anger and at it strongest form, hatred. We can also respond to an off kilter nervous system with delusion, cognitive contortions of thought. (There are also mental illnesses that produce delusions on their own and those also cause suffering.)

I guess the biggest issue I have with the way that Breast Cancer Awareness month is that it’s not even really awareness. Awareness is mindfulness of all aspects of breast cancer, which to a certain respect, is different for all of us, based on medical differences in disease processes, treatment access, and personal, social-emotional and cognitive processes.

And certainly, awareness without constructive actions, is not very useful and if we are stuck there, thinking it is sufficient, I guess that may be a kind of delusion, too.

I hope you find my musings helpful today.

Peace,

Elizabeth

I am checking in after not having written in awhile. It’s been exactly three months since Dad died. I am experiencing fewer moments of diffuse sadness and unexpected negative self-talk. I do feel a pang when I come across a photo of Dad or after not thinking about him for a few hours and then remembering that he is dead. My mom is coping very well. She is making new friends at church, singing again, and approaching each day with a schedule of chores.

I began a Mindfulness Based Stress Reduction (MBSR) course two weeks ago. I have taken one before as well as attended mindfulness classes and retreats. My formal meditation practice had fallen off in the last year. The class is in the evening, something I would not have been able to do six months ago, due to fatigue from taking beta blockers. Since going off of the medicine, my energy level has improved, and taking the class has also resulted in increased energy and emotional balance. I have also started eating more healthfully again. I am being mindful of my food choices, especially quantity and quality. I also decided to change eating plans.

More energy also means more time to do pottery! I’ve been working on some new surface design techniques, which allow me to incorporate my photography into my work. John is still taking classes with me, though I notice that his enthusiasm level is less. Maybe it’s just relative, I don’t know. I do know that he is working to take better care of himself. He had a health scare over the weekend and has asked to meditate with me, which he has been doing all week. John is also exercising again. He’s not yet convinced that his food choices might be significantly improved. I am treading lightly but making my concerns known. We are both overweight and at risk for cardiac problems. John carries all of his weight in his mid-section, which is a risk factor. The fact that his dad died of sudden cardiac death at age 49 is also a risk factor as is John’s high cholesterol.

Our daughter is doing well, nearly a senior (a few credits short) at Western Washington University, about 1 3/4 hours away. She is majoring in journalism, taking vocal lessons, and vlogging. A favorite vlog entry is, “Why you shouldn’t drive like a dick.”

Ah yes, I am also reading the news. Another reason for meditation.

Peace, friends.

I have been trying to declutter my house. Yesterday, I noticed that I still had my “big book of cancer” on the shelf in my bedroom. It’s the 3-ring binder of information I received from my cancer center when I was first diagnosed with breast cancer in 2012.

 

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I used to carry this book around with me to every appointment. As you can see, I added tabs to it to organize all of my medical records by date. Since not all of my providers were at the cancer center, this helped me keep my care coordinated. It also helped me follow my treatment and form good questions.

When I saw it on the shelf recently, I thought, “Get rid of that! Why is that in the bedroom of all places?”

Then I remembered that every pathology report, every surgery report, and my onco/dx testing results are in there, as well as my notes, and research articles.

I will move it out of my bedroom. I no longer have to have it handy. But I may still need it.

Sometimes it is easy to get rid of the clutter of my experience with breast cancer. The harder part, however, is knowing what is clutter and what is not.

I did a saliva DNA test for my ancestry through Ancestry.com about a year ago. My husband was a bit surprised, “Now you’re DNA is out there.” I replied, “My DNA is everywhere. It has not been private for a long time.”

In 2012, I was diagnosed with breast cancer. I underwent BRCA 1 and 2 DNA testing. The test results suggested no mutation of either gene. Mutations are associated with increased risk of breast cancer, ovarian cancer, and prostate cancer.

In 2017, I had two heart attacks within 8 days, due to Spontaneous Coronary Artery Dissection (SCAD). I provided a blood sample to the Mayo Clinic, as part of their DNA registry to identify genetic contributions to SCAD. A few months later, I had some more genetic testing done through a local cardiologist. I found that I have a genetic marker for elevated cardiac risk.

In my situation and with my personality, I prefer to gather information, if there’s not physical risk associated with it. But this is not for everyone. This is why there are genetics counselors, to help us make informed decisions about whether testing is the thing to do and to help us understand the results when we do it.

There are two times that I have refused DNA testing and it has been on behalf of other people. The first was when I was pregnant with Zoey. I opted not to have amniocentesis after a blood screen indicated increased risk for Down’s Syndrome. After looking at the testing properties of the screen, talking with a genetics counselor, and meeting with a neonatal specialist, John and I agreed that the risk of Down’s Syndrome was really low (the screen had a really high false positive rate), not high enough to risk miscarriage through the amniocentesis procedure.

When my dad was diagnosed with stage IV prostate cancer in March of this year, there was a referral for genetic testing. Mom and I agreed that this was not top priority at the time.  Then my dad got an emailed referral once again about a month before he died. I handled Dad’s email correspondence.

Dad had so many medical appointments. He had dementia. He was fully physically disabled, needing two staff members at the nursing home, to move him. (He would later only need one person and that’s what allowed him to be discharged and die at home, as he wished.)

Genetic testing? Really? Since when is it surprising for an 85 year-old man to have advanced prostate cancer?

However, I don’t know the answers to all questions. I am not an oncologist. I contacted the genetics clinic and asked whether it was really important that Dad have the testing done, given his advanced age and limited quality of life. I was told that the referral had been made “due to family history of certain cancers.”

It was now clear to me that it was my history of breast cancer that led to the referral. I wrote back to the PA, explained that I’d had BRCA 1 and 2 testing, was negative, but that my testing had been done in 2012. I asked if she could tell me the testing protocol so that I could get the testing done instead of my dad. She very kindly forwarded my question to one of the physicians, who told me that she agreed that testing wasn’t a great idea for Dad and suggested that I ask my oncologist for what testing to get done.

I haven’t gotten around to the testing yet. I just sent my oncologist an email, asking for her opinion.

The Information Age puts us in the position of finding the sweet spot between too much and too little.

 

 

 

 

You may have heard that the west coast of the U.S. is filled with smoke from summer wildfires. We’ve been in the latest cloud for a few days. As I watched the ash land on my car yesterday, I was reminded of the last time I saw ash in the sky.

It was last October. I was at Spirit Rock Meditation Center for a five night meditation retreat. To the north, there were fires in California, ravaging forests and homes. I was at the meditation center without my cell phone. I had given it up on the first day of the retreat so I could have the retreat experience I wanted. I had, however, told my husband that if any time while I was there, he feared for my safety, he merely needed to call and tell them there was an emergency and I would return home. That never happened. The retreat staff did a masterful job of informing us, just enough, of our safety and the progress of the fires. I was assured that they would not put us in harm’s way.

I had gone to the retreat to be alone with myself, five months after the unexpected calamity of two heart attacks caused by Spontaneous Coronary Artery Dissection, a poorly understood cause of heart attack among primarily seemingly healthy women.

I meditated. I ate. I walked. I slept. I watched the ashes fall on the days of smoke. Sometimes I felt restless. Sometimes I felt bored. Sometimes I felt awkward. Mostly I felt that I was exactly where I wanted and needed to be. I had moments of lovingkindness, peace, equanimity, and mindfulness.

We have ashes falling again. They fall from the sky and settle. The air is hot and acrid. There have been health warnings to avoid vacuuming carpets inside to prevent the ashes that have settled into the fibers from roiling back into the air.

There has been a roil of ashes in my life. Natural calamity. My father died. This happens, especially after a life of 85 years. It is natural but it is calamitous. Normal doesn’t mean good. It means, common. Death is a normal part of life that is really really hard.

Some of the ashes are settling. As I watch them, I am reminded of the mindfulness analogy of the snow globe. If you stop shaking a snow globe, the roil of snow settles. The scene is peaceful but the snow is there.

I can’t help the ashes that fall from the heavens and follow the winds, but I can keep my vacuum tucked away in the closet, at least for now. For me, this means, continuing to protect my emotional and physical energy. I am careful about how much socializing that I do. It takes a lot of energy right now. I do a lot of art. I continue to keep my patient load on the lower side. I ask for help and understanding. I keep in touch with my mom every couple of days. I am taking short vacations.

I am doing my best to let enough ashes settle so that I can see where I am.

Peace friends.

It has been five weeks since Dad died. At this point of the grief process, the part of my brain that remembers things is not working as well as usual. Oh yeah, there’s a word for that, “memory”. It’s not just that I am not remembering facts. I am leaving out steps to different processes. For example, when scheduling, it is important to scroll down so that I can see my schedule for the ENTIRE day, not just the morning. I offered a parent a 4:30 pm appointment for a Tuesday because the view of the day, which only included the morning and early afternoon, was free.  When she returned my email to accept the appointment time, I scrolled down only to discover that someone else was already scheduled in that spot. I did the same thing with a different family for Thursday. Those are two examples. I have more.

I was just in San Francisco visiting a friend and meeting her 7 year-old daughter. I took a bunch of really nice photos of them. We traveled around the city all day and I very carefully checked to see that I had my camera many times. So many times. All of the times except for the one time I accidentally left it somewhere and lost it. I had taken two trips on Uber between the time I last knew where it was and the time I got back to my hotel to discover that it was not in my bag. I contacted the Uber drivers. Neither had seen it. One of the calls was unsettling. The driver didn’t speak much English and I did not speak any of her language. She seemed a little distressed like I was accusing her of stealing or something.

Nonetheless, I had a lot of fun on the trip. However, there was a lot of socializing, not only with my friend and her daughter, but with other people. My friend lives on the East Coast. She and I talked about my going out to see her to meet her daughter. At the time, Dad was not well, and I did not want to travel that far. Although none of the physicians has informed us that his death was coming soon (I don’t think they knew), I could see that his health was rapidly deteriorating. My friend is also a psychologist. The big psychology conference was in San Francisco this year. She suggested that we meet there. It’s only a 2-hour flight for me. So I went and I bumped into many fellow psychologists, especially those that I’d gone to school with. I was happy to see them but I was not entirely up to it. It was draining.

In general, I am finding socializing to be pretty draining right now. I need a lot of time to myself. That was also true during my breast cancer treatment. If I don’t get enough alone time, I get sad and irritable.

I am happy to be back at home. I have a quiet evening to myself.

 

 

 

Three generations

(L-R Martha (Mom, Nonna), me, Sami (niece), and Zoey.)

As I’ve previously mentioned, my mom has been a blogger for many years, with Marta’s Memories, etc. A few years later, I started this blog. My 19-year-old daughter, Zoey, a.k.a. “Trash Gibson” has started blogging but in true Millennial fashion, her blog is actually a vlog and she has her own Youtube channel.

Check it out here.

If you like it, give it a “like” and maybe even subscribe to her channel.

 

Loving-kindness or metta are meditations on compassion. A common metta meditation includes the script, “May you live with ease. May you be happy. May you be free from pain.”

I was engaged in a nearly perpetual state of metta meditation for Dad. In the last two months of his life, the implication of my meditation, oft-considered a type of prayer, was a prayer for my Dad’s death.

In advocating for my Dad’s admission to hospice care, which meant foregoing continued cancer treatment, I felt that I was fighting for his right to die, to exercise his last wishes over his own life, to ease his suffering on Earth.

The last few months have been difficult for my family. I am thankful for what I have learned in my life about dealing with grief in a healthy way.

Mindfulness is the practice of accepting and experiencing life just as it is. My mindfulness practice has been instrumental in helping me experience the deep pain of grief without adding suffering to it. Perhaps more than that, I have learned a great deal about grief from my mother, when it comes to grief about the loss of parents.

The first thing my mom did was to be a compassionate daughter to her aging parents. She provided them with regular help and emotional support over the years. Mom set limits when she needed to. When her father was dying, she provided him with an opportunity to talk about death. He declined the invitation as was his right to do and Mom respected that.

My mother is a church singer with a beautiful voice. She has sung for hundreds of funerals over her singing career. Mom sang for her dad’s funeral in 1987. She sang for her mother’s funeral in 1993.

Two days ago, Mom not only sang for her husband of 63 years’ funeral but she led the assembly in song, serving as cantor for the mass. It was inspiring. What fortitude! I kept looking over at Mom and thinking, “Mom is a rock star of grief.”

My parents had a really loving marriage and I’m not just saying that because Dad just died. They really did. They were a love match, very lucky to have found each other when they were just kids.

Mom no doubt feels deep pain but music is her ministry, a ministry to spread love, compassion, and to ease suffering. She eased her own suffering, the suffering of her children, and of all who witnessed her example.

 

Life is full of choices but there are some choices we don’t have. We don’t choose to be born. This is something about which those of us who have or have had teenage children have been informed. Most of us also don’t choose how we die but want a peaceful passing without suffering.

My dad enjoyed good health for about 81 years. Then he started showing symptoms of Parkinson’s Disease, which he tried to ignore, all the while becoming increasingly impaired physically and cognitively.

Dad came to Zoey’s 19th birthday last September. He was walking unsteadily with a cane and to our horror, was still driving. By October, he could barely walk with a walker and to our horror, was still using the stairs in the house. His first hospital trip was in November. An enlarged prostate had blocked his urethra. His bladder was drained of 2 liters of urine and he was admitted to the hospital. Dad’s bladder continued to drain with a Foley catheter, something he hated, and as it turned out, would need to keep for the rest of his life. Noting symptoms of untreated Parkinson’s Disease, the P.T. and O.T. department referred Dad for short-term rehab.

The first rehab facility wasn’t home but it was really nice. Dad had periods of confusion accompanied by agitation at home, especially at night. Mom was up with him during those times. Dad felt well cared for there. He was a charming and grateful patient. Dad made good progress in his physical therapy and started taking medication for suspected Parkinson’s. Mom and Dad celebrated Thanksgiving and their 63rd wedding anniversary in that facility. He was discharged shortly before Christmas and enjoyed the family party at his house.

Dad was back in the hospital in March with a gall bladder attack. It was there that stage IV prostate cancer with bone mets was discovered. Dad started treatment immediately, taking an oral hormone blocker. He already hated his frequent urology visits and now oncology visits. Dad hated being in hospitals and medical clinics almost more than the treatments he received.

There was still the issue of his gall bladder. At the urging of an incredibly kind and experienced palliative care physician, he saw a general surgeon to have his gall bladder removed. It was planned as an outpatient procedure. I was dubious and the surgeon was kind and realistic about the chances that Dad would be admitted to the hospital for monitoring, especially for signs of infection. After surgery, Dr. Burke explained that Dad’s gallbladder had been “dead”, something that likely happened after years of dysfunction. He also explained that the surrounding tissue was inflamed. Dad was admitted to the hospital overnight and discharged the next day.

Dad did get an infection but it was due to his Foley catheter. Shortly after leaving the hospital, he was readmitted. Dad was sitting in his favorite chair, was in pain, and couldn’t move. During his 12-day hospital visit, he became septic. I really thought he was going to die during that time. He responded to antibiotics and improved. However, Dad’s mobility was quite limited and not good enough to be discharged to home. He went to another rehab facility for another 30 day stay. Unfortunately, the nice facility was not available. The one he went to had good physical and occupational therapists but the environment was bleak, the nursing staff was inconsistent, and the communication about his progress and treatment plan was poor. Dad hated it there. He refused almost all food while he was there, even when we brought outside food.

During the earlier part of these months, Dad and I had conversations about his wishes for a peaceful death and an end to his suffering. Eventually, the idea of a peaceful death became impossible. How could Dad have a peaceful death with all of the suffering that had already transpired? Dad had been an outdoorsman, a builder, an athletic and vigorous man into his early 80’s. He was a level-headed, methodical thinker. Dad had a mind like an engineer and a sensible person. Dad and Mom had decades of wonderful married life. Dad lost his ability to stand, pee on his own, have sex, and even the ability to consistently know where he was. At times of confusion and agitation, he was mean to Mom. When he remembered that he was mean, he felt guilty. He also asked to die during the night, several times a week. This went on for months. The idea of a peaceful death sounded like a joke.

Nonetheless, we kept trying. It was June. The neurology appointment that we’d waited 7 months for had finally arrived. Mom and I wondered if it was wise to bring him to it given how much sicker he’d gotten and how much he hated going to see doctors. We ultimately decided that it was important for him to have a proper diagnosis and treatment. Dr. Davis was very good. She took her time, confirmed the Parkinson’s Diagnosis and modified Dad’s prescriptions.

Within a week, Dad was actually able to initiate conversations. He was more responsive. He became interested in his P.T. and started practicing getting in and out of bed at the rehab facility, with the help of my brother, Steve, who is a natural P.T. Dad started working to go home. He wasn’t always convinced that he was going home or that the rehab facility was not his home, but his lucid periods were longer and more frequent.

I pressed the facility for a progress update because they hadn’t told us a treatment plan or anything. By the time we had a case conference meeting, Dad was mobile enough for discharge. We planned discharge and got a referral for hospice services. Dad was so excited that he was going to be discharged.

Going into hospice care meant stopping aggressive cancer treatment, Lupron shots, every three months. I explained this to Dad and got as clear of an answer that this was what he wanted, as I could, given that he slipped in and out of orientation. Fortunately, we’d had talks before. He had told the palliative care physician that he wanted me to advocate for his wishes. Fortunately, Mom and I wanted the same for him.

Dad was also getting a bone strengthening injection from oncology to protect him from bone fractures. I asked the hospice nurse, Kim, who did Dad’s initial assessment, whether he would be able to continue to have them. Kim told me that she had to contact the regional medical director for hospice, a physician in Arizona, for authorization.

Kim called back later that day. Upon seeing my dad’s file and noting that he’d only been treated for cancer for two months, the doctor asked, “Why do they want hospice now? If he was treated for the cancer, he could live three more years?”

Kim was really kind. It was a fair question to ask given the information the physician had. I explained that this was not my dad’s prognosis, we were told 1-2 years. I also explained his daily suffering and his almost nightly despair. I noted that doctors kept finding things wrong with him and that I wondered what was “under the floor boards” that hadn’t even been examined. I explained my Dad’s wishes and my commitment to honoring them. Kim was understanding and supportive.

Dad came home on Monday 6/25. He was so happy! My brothers and my husband had built a wheelchair ramp for him over the previous weekend. He loved it! Hospice had delivered all of the durable equipment over the previous weekend and we’d put it in place. Dad loved it! “Hey Dad, look at what Hospice and Medicare have provided for you!” The intake nurse, Helen, was kind. Dad stayed awake for the whole meeting, which was unusual.

My brother, Steve, came to the house daily to provide custodial care so that Mom and Dad did not have to hire people privately. Dad would be cared for by Mom and my brother, by family. What a blessing! Steve planned fix-it projects for the house and took Dad on field trips to the hardware store, in the van he had bought especially to transport Dad.

Dad started eating again. He was awake longer. He was talkative. He had a few really good days. Home had made him so much better. I was thinking about the upcoming months with Dad.

After less than a week at home, Dad had a really agitated night. He and Mom were up all night. He kept saying that he needed to get up out of bed and crying for help. The hospice nurse came over, discovered that his catheter tube was blocked, fixed that, gave him lorazepam for agitation and instructions to keep giving it to him. She instructed Mom and Steve to keep Dad in bed for the day for rest and that he would likely sleep through the next day. Dad went to sleep. It was a Friday. He slept through Saturday.

He was still asleep on Sunday. We figured that he was still sedated and needed to sleep it off but we were also worried. Steve called the desk nurse for hospice. She said that she would have one of the nurses call him but also said, “Prepare for a peaceful death.”

“Prepare for a peaceful death!” What????????!!!!!!!!!! Just the week before, I had been asked if we were starting hospice too soon!

The nurse came to visit, said that she thought the lorazepam was still working through his system. Monday came and he was still mostly asleep. The hospice nurse came over to the house. She said that she smelled ketones in his urine. He was burning fat instead of sugar. She said that she thought he was “in transition.” Steve called in the night nurse, who we particularly trust, for a second opinion. She said the same and estimated that Dad would likely die in a couple of days. She also cautioned us to pace ourselves for the possibility that it could take a couple of weeks.

The next day, Tuesday, Dad was significantly more alert. He asked for ice cream, which Mom and I gave to him. He saw the birds lighting on the tree outside his window. Dad moved his mouth to the Lord’s prayer when Mary, the lay minister from their parish, brought him communion. Father Ed, the parish priest came over a few hours later to give Dad the sacrament, Anointing of the Sick. We as family members were able to participate in giving Dad an individual blessing. It was very moving.

On Wednesday he was mostly unresponsive except for exclamations of “help, help, help” He breathing was labored. We gave him comfort medicine, lorazepam and morphine, at regular intervals. Yesterday was Thursday. I worked in the morning and went over to the house at about noon. Dad’s breathing had become even more shallow. He was struggling.

Steve had called hospice. Kim, the nurse who had originally assessed Dad, came to the house about 45 minutes after I got to the house. Steve had gone home to rest. Kim examined Dad. She said that his breathing pattern was typical for transition. During the evaluation, Dad’s coloring got worse. He was even more pale and ashen. Then there were long periods between his breaths. Kim told me that his death was close. I called Mom into the room.

Kim held Dad’s head and stroked it. I rubbed Dad’s shoulder. Mom held his hand. Mom and I sang, Amazing Grace. Dad took his last breath a few minutes later.

Kim had tears in her eyes. She hugged us both. We thanked her. How grateful we were for her guidance. It helped us be there for Dad.

Peace is not an on-off switch. Dad had moments of peace even in the suffering. He asked for ice cream. He told Mom that she was his “first love”. That was two days before his death. Yes, he was suffering, but to rise above that to ask for a simple summer pleasure and to profess love? That means something. It means a lot.

My Dad was surrounded by love when he died. He had a peaceful death at the very last.

Dad died today. Mom and I were with him along with a beautifully sweet and competent hospice nurse, Kim. I have much to write about what has transpired in the past 2 weeks. Today, my mind is too full.  One thing I will share is that Dad passed surrounded by love and for that I am truly grateful.

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).

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