Yesterday was a very challenging one for Dad. This morning there were little victories.

He ate part of a pancake this morning. Victory!

The surgeon removed his surgical drain. Victory!

He had enough energy to talk to me on the phone today. Victory!

When I remarked that he sounded much better, acknowledged that I knew that he still felt crappy, but reminded him that yesterday was “horrible”, he quipped, “I am one step above horrible.” Victory!

He told me that he was thirsty and asked Mom for water. Victory!

Sometimes staying present in the moment means measuring victory in bites of pancake.

While my mom and I tried to fill time and stave off worry with chatter, Dad looked off into space, at nothing in particular. He looked off for a fairly long time. He was away but not gone. Not gone but not here.

Dad’s in the hospital again.  He is being treated for a urinary tract infection. He is responding to treatment and having good moments of presence with his family. But he is also really sad and being present with that.

After months of physical therapy, he went from being able to walk as long as 300 feet in his walker to not being able to turn over in bed without assistance. As he said, after gall bladder removal last week, he’s “gone down the tubes.”

I’m not sure why gall bladder removal is still considered an outpatient procedure on an 85-year-old man with Parkinson’s Disease, diabetes, and countless other maladies. He ended up being admitted for a night after the surgery and discharged the next day, to our surprise. As it turned out, he was discharged too soon. I’m not blaming the surgeon. Sometimes you give the ball your best swing and miss. And he didn’t have the infection yet.

I am trying to a be an understanding soundboard for Dad. Someone he does not have to worry so much about burdening with his sadness. I can validate his pain and his experience of decline. After listening and empathizing I said, “Dad, I think you can get better than you are right now but I know that it’s hard knowing that you will never get completely better.”

We have conversations like this at least once a week. They are short and followed by a silence that is still sad but also filled with love and connection. At those times he is here and we are together, joined in time and space.

“Hmm. I want to do something relaxing. Hey, I have a gift certificate to the spa!”

Those were my thoughts a couple of weeks ago. I called the spa and asked if they had any openings for a massage the next day. They did, I made the appointment, and the massage was wonderful and almost completely covered by the gift certificate.

This anecdote would mildly pleasant though not very interesting if it weren’t for one thing. I’d been carrying that gift certificate in my purse for about ten years. According to Washington State law, gift certificates never expire. As long as they don’t get destroyed and the business is still operating, one can use a gift certificate at any time.

In many ways, this is a wonderful thing. Human beings, however, have a funny habit. We tend not to do something that is not part of our daily routine if there’s no built in time frame. Even stuff we want to do.

So what made me use that gift certificate?

If I had to guess it is because current stressful events in my life have upped my motivation to take care of myself. I’ve been providing more support to my parents, which takes time and energy.

My mom recently worried aloud that the support that I am giving them is “too much” for me given my work responsibilities and the time I devote to staying healthy. I told her, “Mom, I want to help you and Dad. It is a priority.”

My dad said something similar. I related to him how frustrating and powerless friends of mine feel because they would like to help their ill parents but live too far away to help as much as they like to. I feel lucky to live nearby. I am also lucky that their other five children, my brothers, live relatively near by and help, too.

Every living thing expires, eventually, and time ever moves forward.  Nonetheless,  each day contains almost countless opportunities. I am working to be mindful of these opportunities, opportunities for exercise and meditation, spending time with my family, and making art. Despite the pain and sorrow of this time, there is also balance and most of all, there is love.

I used to work for a not-for-profit organization that developed social emotional learning curricula for schools. Schools bought the program through a federal grant program. They were doing really well. Then there was an election. The new president had different priorities. There was also some accounting problems within the organization. To make a long story short, it was announced one day that one-third of the employees would be laid off and that people would be notified in two weeks.

This was an extremely stressful two weeks in late spring. I dealt with this by toiling in my flower garden daily, labeling nearly of my plants with markers. I must have put out hundreds of markers.

Sounds a little batty, huh? It was actually quite meditative. I hadn’t started formally meditating yet but looking back, that is what I was doing. I was a bit of a mess during that time and as it turns out, I was one of the people laid off, but without my garden work, I think it would have been even worse.

As I’ve mentioned, my dad has been quite ill. My mom is care taking around the clock. I know that they both very much appreciate the support they are getting from my brothers, their spouses, and from myself, not to mention from their neighbors.

My mom told me recently that she was worried that the support I was giving to them was too much for me. I told her, “I’m not going to lie and tell you that I don’t feel it but you and Dad are top priority. I want to help you. I am glad to help you.”

I have days when I am sad. But that is understandable. My dad is suffering. To love deeply means that there is pain when a loved one is hurting. This is a hard but normal part of life.

Self-care is also a top priority. I re-arranged my life six years ago to make room for that and I am very assertive about protecting that space. I meditate, I walk, I do art, and I make Indian food.

Cooking has long been a passion and a meditative activity for me as long as I am not feeling in a rush. I discovered an Indian cook book for my electric pressure cooker. The recipes are delicious. I love Indian food and had not previously made it. It is also well-suited to my dietary restrictions as long as I skip the breads.

My freezer is full of delicious curries, all vacuum-sealed into dinner-sized portions. I started out doing this as a way to help my brother and sister-in-law because my sister-in-law was having foot surgery. I told them that I would make them dinners. So I did. Then I gave them more. Now my freezer is full and theirs is, too. My husband says that our freezer looks like a library. It’s full of stacks of  labeled bags. I also keep my fridge stocked with home-made Greek (strained) yogurt.

Making curries, dals, and biryanis is meditative and delicious.  It is also a blessing to give to others. If my dad could eat spicy food with moderate fat, I would give some to my parents, too.

Curries can be healing to make and to eat.

I wish you a day full of peace, love, and flavor.

There are a lot of “what not to say” to a cancer patient lists.  Although I agree with the intent, the lists rub me the wrong way. There’s nothing in them that suggests alternative, supportive behavior, and that’s one of the reasons that many people don’t respond well to people with cancer. Cancer is scary and if saying or doing anything could be on the “don’t list”, responding appropriately although not impossible, is very difficult. There’s also the issue that people are individuals and what may be supportive to one person may not be to another or even to the same person, what might be supportive at one time may not be supportive at another time.

A better version of the list was the “comfort in/dump out” diagram, first published in the LA Times in 2013. The diagram consists of concentric circles in which the person with cancer is in the center, as the person most impacted by the illness. It was a pretty good approach, much better than a “don’t” list though some people took it as license for the person at the center of the diagram to be as nasty as they want to be to everyone in the larger circles while expecting support from all of those people. I don’t blame the author for that because I think it is a misinterpretation of the diagram. An issue I have with it, however, is that for some of us, we are not able to put ourselves in the middle. For example, when I was diagnosed with breast cancer in 2012, I had a 13-year-old daughter. I did very little “dumping out” at her and expected very little “comfort in” from her. I was still the mother of a child, a child who was dealing with her mother having cancer.  The parent-child relationship, at this stage, is not reciprocal. Parents give more, kids give less. To flip it around is not good for a child’s development.

My daughter lives away now at college, which has made self-care easier for me. However, my 85-year-old dad has been quite ill with an increasing list of debilitating ailments. He now has more physicians than me and has been hospitalized twice since November. This is the stage of the parent-child relationship when the child needs to step up on giving. I also have five brothers who live locally so they help, too. And my mom takes excellent care of Dad.

I had two heart attacks less than a year ago. I had breast cancer 6 years ago. Sometimes I can be at the center of the circle, sometimes not. Mostly, my dad is at the center, and to be truthful, he does his fair share of “dump out”. But also has times of incredible sweetness and gratitude, which is a support to all of this caregivers. My mom, who is on the receiving end of 99% of the “dump out”, is sometimes impatient, but mostly bordering on sainthood. The grouchiness and displaced anger do wear on her, as does responding to my dad’s frequent calls for help in the middle of the night. We’ve gotten impatient and frustrated with Dad, on occasion. He gets fixed on money, not wanting to spend it, even on things that would make life a lot easier. And then there were all of those years that he refused to get the earlier signs of illness checked out despite getting referrals from his primary care physician to do so. He was clearly at the center of the circle, but he wasn’t making good decisions. There was perhaps some “dump-in” that occurred during this period, which lasted three years as we watched Dad go from a man in his early 80’s who could still hike several miles to shuffling, to barely being able to walk, to barely being able to walk with a walker.

Life is messy. Sometimes we dump out. Sometimes we dump in. Sometimes we just don’t know what to say or do in sad and scary situations. Everyone is at the center of the circle at one time or another. Sometimes the people who say or do “the wrong things” are in the center of a DIFFERENT circle. This is a fluid process. There is no prescription for being a decent person.

In the process of accepting all of this, perhaps we can learn to do better and to be forgiving for the times we fail.

16 years ago, when our daughter was 3 years old, everyone in the family had a cold. Zoey got it first and was too sick to go to daycare. The cold developed into a sinus infection for John and me, and an ear infection for Zoey. Zoey got better before John and me. We’d been trying to carry off our life responsibilities while we were feeling crummy. By the second or third week of this, we were cranky and bickering frequently. Zoey noticed and was curious.

Zoey: “Are you and Dad argoooooing?”
Me: “Yes, Dad and I have been arguing. I’m sorry.”
Zoey: “You shouldn’t argue. You should problem-solve!”

Some day I will write a book about rearing a child who outsmarts me right and left, but today is not that day. Problem-solving was a pretty good idea. Bickering really doesn’t lower stress, which was the main problem. We were sick, leaving us with inadequate energy resources for our normal life routines.

Recently, life has been piling on. My husband caught this horrible cold four weeks ago so I was picking up extra chores at home. Two weeks ago, I got the cold and it’s a particularly nasty and long-lasting one. I spent about a week on the couch and I am still recovering. I got all dressed for the March for Our Lives in Seattle and realized that I am just not up for it. My husband left and will be protesting for two. I’m disappointed because I really wanted to support the march. I am reminding myself that there are a lot of ways to support this national group of high school students working for gun safety including the monetary contributions that I have already made.

I have what will likely be a hard week coming up. My dad’s health problems have multiplied in unexpected ways. He was in the hospital for nearly a week while I was at the height of my cold. I couldn’t even call by phone for a few days because I had no voice. Thank goodness for email and texting. He has three medical appointments next week. I am going to two of them, scheduled back-to-back on Monday. We’ll learn some important test results as well as discuss a treatment plan. On Thursday, my oldest brother is accompanying my parents for a surgery consultation. On top of everything else, my poor dad has had gallstones and needs to have his gall bladder removed.

My husband has also been exhausted much of the time for the past year. About 2-3 years ago, I noticed that he was snoring heavily and that there were long gaps between breaths. I suggested that he get checked for sleep apnea. He agreed that it was a good idea but there were things that were higher priority for him at the time. As time has gone by, he has gotten increasingly impaired. He just found out that he has severe sleep apnea and he will get a CPAP machine in about a week. How bad has his sleep deprivation been? So bad that John is ecstatic with his diagnosis and eager to begin treatment. I think he will start feeling much better in about 6 weeks but it’s been a long slog.

I am doing as much problem-solving as I can to be able handle all of this. I’m prioritizing my activities and eliminating non-essentials. Unfortunately, that meant canceling a trip to Stanford University for a SCAD patient retreat. I am not eliminating all self-care, just the self-care that takes a great deal of time and energy. A trip to California meets those criteria. Getting a pedicure with leg and foot massage following an acupuncture treatment did not take up too much time and was restorative. Meeting my friend, Nancy, for an early dinner did not take up too much time and was very fun. I rarely get to spend time with my friends.

Yesterday, my life slowed down a bit after a busy work week. I am absorbing a lot. The hardest thing to absorb is acceptance that there are many important problems that I can’t solve. I can’t make my 85-year-old dad live forever. I can’t eliminate my 83-year-old mother’s caregiving responsibilities.

Life is a lot.

Part of being a testing psychologist is explaining results to worried parents. Parenting hits us at the tenderest parts of our heart. Recently, I was providing feedback on testing I had done with a bright 7-year-old with severe learning disabilities. There were parts of testing that were poignant, for example, the 7 minutes and 5 seconds it took her to read a 92-word-long story. She worked so hard only to make 75 errors. Imagine what this child’s school day must be like. Her parents were naturally eager to learn what they could do to support literacy development. They also had questions about how to boost their child’s self-esteem. Then I got a question I’d not previously heard in the 23+ years I have been giving this kind of feedback to parents. “How can we get her to believe that she can do anything?”

As an expert, I know that the speed of my response is important. Answering too quickly gives the impression (sometimes accurately) of not having listened. Answering too slowly gives the impression (sometimes accurately) of not know what I am talking about. In this case, I had a strong gut feeling about the answer but had not gotten my reasoning quite together. So I gave a response that gave me time to think and also framed my thoughts, “I’m not sure that is a healthy goal.”

I went on to recommend focusing on the present, namely, helping their daughter develop academic skills so that she would experience more success. Then I talked about the importance of self-awareness of strengths and weaknesses in success. I gave myself as an example. I’ve never thought I could do anything but I thought there was a lot I could do and that helped me be successful. It was a good enough response, I think, but my thinking was unfinished. I have been mulling this over.

The kids I see in my practice, by and large, have a great deal of difficulty being successful in school. They experience failure over and over. People often try to encourage them by saying, “You can do anything you want to!”  The implication is that each of us has all of the ingredients we need to fulfill infinite possibilities.

What does it mean if you can “do anything you want to do” and you still fail?

“You don’t care.”
“You are lazy.”
“You just need to try harder.”

Those are some of the top reasons that I hear from parents, teachers, and the students, themselves. It occurs to me that this is the same fallacy of the American Dream. We can all achieve economic success if we try hard enough. People who are not economically successful just are lazy, not trying, and don’t care.

These are also the punishing expectations for those of us who become physically ill. There’s a slightly different spin but it all boils down to, “your fault”.

“You didn’t eat right.”
“You didn’t exercise right.”
“You have a bad attitude.”

None of this is true. Effort, attitude, and motivation can make a difference in coping with adversity but they do not make ALL of the difference.

Believing in a just world can help us feel more comfortable and in greater control. But it is not reality and delusions can be destructive to those who are in need of the most understanding and acceptance.

We can do a lot of things, every one of us. That’s the reality and beauty of humanity. That encourages me. It works against the tyranny of perfectionism and the self-delusion of a “just world” view.

I can’t reach for things if my feet aren’t firmly planted on the ground.

Reality. Let’s do that.

 

When kids play baseball, they are often taught to “chatter” at the person at bat, a defensive strategy to unnerve the batter. When I played, I was a coordinated kid who tended to worry about the team.

Hey batter, batter, batter
Hey batter, no batter, batter
Hey batter, batter, batter…
Swing!

For me, it was indeed unnerving, especially the “swing” part. Chatter often took me out of the moment of the pitch, the ball, and my bat. Even without chatter, it was hard to inhibit the urge to swing at a ball that was headed toward me. But as any ball player knows, sometimes the best response looks like no response. If you can keep watching a bad pitch and keep from swinging, the pitch counts against the other team. If you keep getting bad pitches and manage to stay there at home base, looking ready to swing, but not swinging, you get a “walk”, which means a free trip to first base, by just watching carefully and not acting.

It snowed last night. I was watching local news and they were talking about the “treacherous” driving conditions in Seattle. This was a bit amusing because they also reported that there was only 1/3 of an inch of snow. Even in Seattle, a very hilly city that doesn’t get a lot of snow, this was more than a bit much. The local news loves to chatter about all kinds of exaggerated dangers.

I awoke this morning to a bit more snow than I expected. It was still just an inch but I started to worry. What if my 9:30 am patient’s parents were uncomfortable with snow driving? There are a lot of micro-climates where I live and they were coming from south King County, which typically gets a lot more snow. Then I checked my email. There was, indeed, a note from the patient’s mom, asking if the appointment was still happening.  Still in bed, I mustered my best professional voice, I called the mom. She said that she was comfortable driving to the appointment so we kept it as is.

I thought, “I’d better get up now so that I have time to get the snow off of the car.” I also had a number of other chores to do, one being an unexpected search for the wool sock I’ve been knitting. I noticed that I had forgotten to put away my knitting bag last night. “Oh no!” My cats have disrupted so many knitting projects in the past, that I’ve learned to keep my knitting bag put away in a storage bench that they are unable to open. My sock was missing without a trace! I scurried around looking for the sock, keeping my eye on the clock, and telling myself, “You don’t have time to look for the sock!”

My brain was chattering away and I was walking willy nilly from room to room looking for the sock and getting ready for work. At one point I got a glance out the window. I stopped and looked. I saw our 60-year-old Douglas Fir full of snow against a perfectly blue sky. I watched and experienced the moment of still, chatter-free beauty. I immediately relaxed and started breathing more deeply.

Sometimes we need to swing for the bleachers. Other times we just need to observe the moment and do nothing. In that moment I chose to be in it, absorbing the beauty around me.

Take your base.

Several years ago, I was back east. My dear friend, Cheryl’s, mother had died after a long illness, early-onset Alzheimer’s. Cheryl had been her mother, Daisy’s primary caregiver since she was a 25-year-old psychology intern. Fortunately, Cheryl lives in her childhood home in a wonderful neighborhood. When I visit her, neighbor’s come over to greet me because they know that I am one of Cheryl’s people. Nonetheless, it was incredibly difficult for her, a single woman finishing up graduate school and starting her career, to care for her mom. Cheryl has her own health challenges, which are exacerbated by stress, and required multiple surgeries during her mom’s life. After several years, Daisy entered a nursing home.  As her life neared its end, her best friend, Shirley, a retired nurse told Cheryl that her mom’s time was coming to a close. It is so hard to know exactly when someone is going to die and even harder to let someone go. Daisy had been a single parent to Cheryl and they were very close. She died before a priest could come out to perform last rites, Anointing of the Sick. The parish priest did come afterwards and performed the final Roman Catholic sacrament.

I arrived a few days later. A group of neighbors set up a repast of Trinidadian food that had been brought by caterers (Cheryl’s parents were both from Trinidad) while the rest of us attended the funeral. The officiant had been Daisy and Cheryl’s parish priest many years before and was now a cardinal and a family friend. The service was beautiful. One of Cheryl’s friends, a neighbor, sang. The cardinal also sang parts of the mass and he had a very nice voice. After mass was ended, we went to Cheryl and Daisy’s home for the repast and celebrated Daisy’s life.

I stayed on for a few days. I went to mass at Cheryl’s parish. The priest who had performed Daisy’s last rites presided over mass. The theme of his homily was “what are you waiting for?” To my horror, he used the story of being called to perform last rights on Daisy after she’d died. He went on and on. I left church humiliated and livid on behalf of my dear friend who had been nothing but a wonderful daughter not to mention the fact that he knew that she was not only a member of his parish, but one who had just lost her mother to a truly horrible disease. Both Cheryl and this priest had a story about what had transpired. They were very different stories. It is easy to call one of them right and one of them wrong. I know which one I would call wrong!

I have not written any entries in this blog for nearly a month. I have used the month thinking about the stories we tell that provide meaning to us in explaining our life experiences. Breast cancer survivors tell lots of meaningful stories. So do heart attack survivors, by the way. Not surprisingly, they are some of the very same stories about “kicking illnesses ass”, about “being given a second lease on life”, and even the perception of illness as a “gift”.  There are also the stories of “My life will never be the same” and “What’s going on? This is horrible!”. There are also national heart awareness days, including the recent “Wear Red Day” to raise awareness of cardiac disease in women, the number one cause of women.

I have been living in a particular breast cancer blogging community for nearly six years now. I find that I bristle at some of the narratives told by heart attack survivors. I have also not delved deeply into the cyber community for SCAD survivors. There is a lot of raw terror in that community. It makes sense. Most of the women are young, had a heart attack out of the blue, and they have cardiologists who don’t understand their condition. Those are the women who have a narrative of chaos and literal heartbreak. I don’t bristle at their stories. I just feel very sad for their suffering. It’s the catch phrases used by the women who by all appearances seem to be coping well. They are the ones who are more likely to use the phrases that are so controversial in the breast cancer world.

Yesterday, I thought back to perspectives of my friend and the priest around Daisy’s death. The priest’s actions were clearly “wrong” in that they were unskilled and did not demonstrate compassion for others. The stories they told were very different. I do think that Cheryl and the priest shared something very important. They were both dealing with suffering. How was the priest suffering, you ask? Admittedly, I don’t know his mind but I have some guesses, based on his job. Priests are on-call constantly. And they are on-call for decades. Not everyone is up to that every minute. I can see someone getting wrapped up in the stress of this and having a fit about an inconvenience. This does not excuse his behavior but it offers a possible explanation.

The stories we tell may either help or amplify our suffering. The helpful story I tell myself may be one that would cause suffering to someone else in a similar situation. This is why the “cancer is a gift” narrative doesn’t bother me the way it does some others. I can see that it may help some people. As long as people don’t explicitly tell me how I should view my own life experience, I am fine with it. What I have been struggling with is the backlash against these narratives. It is one thing to say, for example, “Cancer was not a gift for me” and quite another thing to say, “Cancer is a gift to no one.”  To me, that causes the same problem as the one that is trying to be solved, that is, prescriptive language that defines experience.

But really, what does it matter to me? And who am I to invalidate anyone’s personal characterization of illness, just based on the ideas? If you want to tell me that “cancer’s a gift”, that’s fine as long as you are not my husband or another close loved one. If you want to tell me “cancer’s never a gift.” That’s also fine. If you don’t like the word, “journey” or any other phrase or word that is currently popular, that’s fine. I define my own experience. And the narrative that I am putting together is dynamic and at times, very messy. I respect myself. I respect you.

As always, I wish you peace, joy, and to be free from suffering.

For the foreseeable future, I am done with tamoxifen! Yay! Starting tomorrow, I will not be taking it. Yay!

This marks the end of my planned breast cancer treatment, which began in May of 2012. I say “planned” because as you know, plans can change based on new information. Based on today’s information, I am done!

It’s not that tamoxifen was so bad but I did take it for 5 1/2 years and although I had few observable side effects, one wonders about what goes unobserved. Bigger than that, though, is the fact that now I am only being treated for one disease, SCAD, and not two. That seems significant. In a few months, if all continues to go well, I will be able to discontinue the beta blocker I take for my heart. It contributes to fatigue. I will be happy to be finished with it and just continue taking baby aspirin for the rest of my life.

I don’t know if any of you readers out there are new breast cancer patients but if you are, do know that milestones can be achieved. We don’t know the future but the possibilities are varied and some are sweet indeed.

Peace friends,

Elizabeth

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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