Courtesy

Recently, I was sitting in a waiting room at my cancer center within the breast cancer clinic, which isn’t the most pleasant of places, also I hate to wait, so I’m usually irritated just having to sit there.  The room was full of women in various stages of treatment, many sporting the typical trappings of treatment–scarves, ports, gray skin, drooping energy.   On this particular day, there weren’t any male caregivers accompanying any of the female patients.

There was a single man in the waiting room, also a patient.  He was gaunt, had a port, and no hair.  I’m terrible at estimating age, but I’m pretty sure he was in his 70s at least.  As each new patient walked in to wait, he insisted on giving up his seat if there were not open chairs.

The women obviously going through treatment were clearly grateful for the opportunity to sit down and thanked the man effusively.  The female caregivers accompanying a female patient attempted to convince the man that they didn’t need a seat, that he needed the seat more than them.  He would not be deterred.  He insisted that each woman sat in his seat.

A lot of things went through my mind as I watched this kind man repeat this dance as each new person walked in.

First of all, I vividly remember the look of betrayal on my eldest son’s face when I told him he needs to hold the door for girls.  We’ve worked hard to ensure that both our boys know that all options are available to both boys and girls, that neither boys nor girls are better than the other, that there is equality amongst the sexes.  Who knew that holding a door would be such a curve ball?!

Secondly, I was astonished while pregnant how often men didn’t help, how men didn’t give up their seat, and how it was usually other moms who jumped in and helped.  I’ve been told by men that I know well that they are afraid of being castigated by women when attempting to help and each of them had a personal story to share.  I have a hard time understanding this reaction on both sides.

Third, whenever I see an older man who is helpful and courteous to those around him, I am reminded of my paternal grandfather.  He wasn’t perfect; at the same time, he was part of the oft labeled “Greatest Generation” and it showed.  We often joked that he could literally talk to anyone and he really could.  He was also unfailingly courteous, especially to women.

At the end of the day, courtesy is courtesy.  I’ve revised my instructions to my boys to be this: “hold the door for anyone who is behind you; look out for anyone who needs help and offer to help; if you are seated and someone older than you doesn’t have a place to sit, then give them your seat.” 

While I was imprinted with this idea that men should be courteous to women, I hope to imprint my boys with something different, that we should all be courteous, full stop. Courtesy is always a good idea.

Entering in

I’ve written before about Holding Space for others, i.e., sitting with someone in crisis rather than trying to fix it or give advice, and the Ring Theory of how people in the epicenter of a crisis should be supported and never dumped on. This post could be considered part II of either post or maybe part III in terms of this type of topic. Clearly there’s something about this topic that is gnawing at me, so I keep coming back to it.

I’d like to introduce a few other concepts that are part and parcel of my analysis …

The first is “ghosting”. This is a term that is often used to describe how healthy people, friends and family, often disappear once someone has been diagnosed with cancer or any other serious illness. The general thought is that sometimes an illness is too much for some people or maybe the relationship wasn’t as close as was thought by one or the other. Ghosting has been written about a lot in the cancer community and I’ve not met anyone who doesn’t have their own story, their own hurts, their own expectations that were let down when the person or people who they thought would be the ones to really show up, didn’t.

Sometimes this hurt is about friends, sometimes extended family and sometimes immediate family; spouses who can’t handle the struggles of illness, children who aren’t able to get past how a parent’s illness makes them feel to be able to help, siblings who have their own lives and concerns and can’t spare the emotional energy.

The definition of ghosting I found online was quite succinct: “the practice of ending a personal relationship with someone by suddenly and without explanation withdrawing from all communication.” I know this happens outside of cancer and it’s just as hurtful. All the platitudes in the world cannot address how devastating it is to be ghosted, to have those expectations dashed when you least expect it.

I keep using the word “expectations” and I think this term is also significant in the analysis. An expectation is defined as “a strong belief that something will happen or be the case in the future.” The idea of managing expectations often comes up when someone is seeking to prevent a let down or disappointment by communicating in advance what should be expected.

I believe that a big part of the ability to understand the expectations of others is empathy. If a person is unable or unwilling to put themselves in another’s shoes, then the ability to understand the why behind another’s actions or beliefs or reactions is significantly compromised. I would venture to guess that the source of many conflicts, many disappointments, many relationship woes is a violation of someone’s expectations, communicated or otherwise.

I am bad about communicating expectations up front. Sometimes this is because I’m not always consciously aware of my expectations; sometimes it’s because I often think my expectations are just universal requirements. Sometimes this is because I typically expect others to react as I would.

Isn’t that also universal? Expecting others to react or act the way you would is likely one of the reasons why so many cultural miscommunications happen along with gender miscommunications and so many other things.

And finally that leads me to the concept of “entering in.”

In my view, to enter into the life of another is being willing to shoulder their concerns, look through their eyes, and walk this life with them. It’s a bit like empathy, but with legs. To me, to enter into another person’s life is to experience life with them, not just the ability to see life from their perspective.

I think everyone wants other people to enter into their lives. This intimacy with another person is frankly what we humans are built for. Those of us who are introverts want far less people to enter into our lives than most extroverts, but we all need others who have entered into our lives in order to feel valued as a human being for ourselves, not just for what we can do.

Entering into a life that is uneventful is one thing, it’s quite another to enter into a life when a serious illness is present. In my life, and the lives of many others living with a terminal illness, the rollercoaster of emotions is normal to us but daunting to many others. To enter into another’s suffering requires a different level of intimacy, of vulnerability and of love. To enter into suffering is to put aside one’s desire to have a “normal,” uncomplicated life and to accept that part of your heart is walking around in another person’s body. To enter into another’s suffering is the greatest gift any human being can give to another.

I’ve been blessed throughout my life with people who have entered in. My parents, while not perfect, have demonstrated their willingness to enter into my life in so many ways since I was a child. Even more so now that I’m living with metastatic breast cancer. They’ve never wavered and they’ve made good on their promise when I was diagnosed that I wouldn’t walk this path alone. My husband, who has had to adjust everything in his life to accommodate my needs, holds true to his wedding vows every day. He meant it when he vowed to be by my side through sickness and health, I just wish it had been more the latter and less of the former.

The most unexpected people to enter into my suffering have been those I’ve met in the same or similar situation. The late night conversations, the support group discussions, the care packages … when someone is going through the same thing, a shorthand develops. The uniqueness of saying, I know exactly what you are going through and I’ve experienced it myself, cannot be discounted.

I cannot say strongly enough that to enter into someone else’s life is a gift of incalculable value. To be seen, truly seen, is rare. To be supported, exactly where you are, warts and imperfections and all, is the most healing thing that’s ever happened to me. To know others who are willing to shoulder the very heavy burdens I carry, even for a little while, meets a need that I couldn’t articulate, couldn’t ask for.

Hold onto people who are willing to enter in, bold onto them because they are a rare breed, hold onto them and enter into their lives. There is nothing sweeter or more significant than going there with another person.

Gossip

I hate gossip. Hate it with a passion.

The definition of gossip I’ve relied upon is that if a person isn’t part of a problem or the solution, then conversation with that person about someone else equals gossip.

And gossip is incredibly damaging.

I’ve lived my professional life understanding and living the confidentiality that I learned in law school. I’m certainly not immune to the desire to share information about another, to be considered “in the know,” at the same time, I’ve also learned to hold some information closely.

I’m also a bit rabidly loyal and protective of my friends; so, when I hear gossip and when that’s about a friend of mine, I see red. Like bright flashing red lights that cannot be ignored and I have to act, I have to speak up.

“Great minds discuss ideas; average minds discuss events; small minds discuss people.” – Eleanor Roosevelt

A study out of Florida State University (FSU) found that adult women tend to gossip about other women to make themselves look better by comparison. The author of the study, Tania Reynolds, found that women tend to spread rumors about other women who appeared to pose a threat, even if the offense was something as innocuous as being more physically attractive or having other superficial gifts. Another interesting finding from the study was that highly competitive women tended to gossip more.

Reynolds posits that the first step to breaking this ugly habit is for everyone to be aware of the tendency.

“We can make strategic decisions to reduce that in ourselves . . . and choose our friends carefully. If a woman is gossiping to us, she’s probably also gossiping about us. What we say about others, people instinctively attribute to us,” she explains. “Even if you’re competitive, the better strategy is actually to spread positive information, because people will attribute these great traits to you.

It has been the greatest mystery I’ve encountered in my adult life, that grown women gossip like middle or high school girls. I don’t get it and it’s incredibly damaging. I’m a highly competitive woman and I get the inclination to gossip, but we must all curb that tendency, that destructive pattern.

After all, we could all use some positive thoughts directed towards us.

Living Life Like You’re Dying

Those of us with Stage IV metastatic breast cancer are actively dying. Yet, death is not immediate. The median life expectancy is 2-3 years and I am meeting and hearing of more and more “outliers,” those women who have lived far beyond the median and beyond. Until we know why there are outliers, the newly diagnosed are stuck with the average statistics.

When I learned that I was metastatic, my then radiation oncologist awkwardly gave me a few examples of women who had lived around ten (10) years after being diagnosed. I think she was trying to give me some hope; however, I had just learned that I wouldn’t be celebrating at the end of treatment since treatment would never end and it felt hollow.

Really hollow.

At that point, when I was still grappling with the new reality of living with a terminal diagnosis, my version of living life like I was dying was to radically change my life. To drop the many balls I was juggling and simplify everything so that I could spend whatever time I had left with the boys.

Now that real life has intruded a bit, I find that there is a significant difference between my medical treatment and all that entails and the regular stuff that I have to carry. Laundry, homework, etc., the normal chaos of life with kids and a husband and extended family commitments.

So, how does one live like one is dying?

I’m still figuring that out, but I can definitely say for sure that I don’t wait to do the things I want to do, the things that I enjoy. Others plan trips, go see all the places they’ve always wanted to see. Others make bucket lists of all the experiences they want to have.

All of that feels odd to me.

It feels like counting down to ones last days.

I get that we’re all doing that to a certain extent, especially those of us have already been told that our expected life expectancy will be much much shorter. The reminder of counting down a list is just too much for me. Way too much.

And so, my version of living life while I’m dying is to focus on the present, not put off that which gives me joy, and to keep my cancer life away from my boys. They will have to deal with the reality at some point, but #NotToday.

A long time ago, I stopped making New Years resolutions. It always felt a little odd to me and I just didn’t find myself adhering to any of them anyway, outside of the first week of January. A few years ago, I joined an amazing executive women’s group called Arete and the founder, Dianne Ogle, introduced me to picking a word each year. I’ve been picking a word each year since then and even though I can’t participate as much with the dear women of Arete, it helps me feel close to them.

So, as I live while dying, I will be looking for the sacred in every day life.

What do you hold as sacred in your life?

Metabolic activity

As far as I understand it, increased metabolic activity creates higher SUV value on a PET scan. In more understandable terms, the places where there is more activity shows up brighter on the PET scan. Brighter images on the PET scan means the cancer has “woken up” or is starting to wake up; that the cancer is no longer held in check by current medication regimens.

That’s what showed up on my PET scan on Monday.

The new lesions from August, 2019 when the cancer outsmarted Ibrance are active again, along with older lesions that had previously calmed down or, as we hoped, had died completely. That hope was dashed this week. As much as we think we’ve outsmarted the crazy resilient cancer cells, they prove us wrong at times.

Being wrong is a horrible feeling and even more so in this context. It’s literally life and death. My life and my death. The weight of that, to be making decisions that will literally affect the length and the quality of my life, cannot be adequately described. It’s stressful and the pressure is beyond explanation.

While the cancer cells are getting themselves active again, the good thing is that there are no new lesions. There is nothing new in my bones and the cancer has stayed inside my bones. For a variety of reasons, this arrangement is what we need to keep in place as long as possible. Basically, as I understand it, we caught the impending progression early enough that we may have some hope of reining it in.

In light of the fact that Piqray is so new, the information/protocols describing what to do in this situation are limited. As my medical oncologist said, we’re in a gray area without much of a compass at this point. So, today, in our appointment, we went back to the basic science. After reviewing my research and hers, we got a science researcher on the phone; a science researcher who is working on a drug to improve the efficacy of Piqray. He’s in a unique position to be able to provide information to inform our discussions.

And so we came up with a plan for the short term. As I’ve often said, we terminal cancer patients literally live scan to scan, unable to make plans until we see the results of the next scan. These next three months are going to be quite interesting in many ways and not just in my household.

The current plan:

  1. I’ll stay on Piqray, Faslodex, Jardiance, Zometa and my regular list of supplements and vitamins.
  2. Tomorrow, I’m adding Metformin CR back to my regimen. I’d been on Metformin when I first started Piqray and then I switched over to Jardiance for a variety of reasons that are no longer relevant. The two drugs (Metformin and Jardiance) work very differently on the insulin and glucose in my body, and the hope is that they will work in a complimentary way. It is the insulin, after all, that fuels the cancer via insulin receptors. My insulin, while under control, is higher that we’d like it to be.
  3. After chemo education next week, I will also add Kisquali. Kisquali is another CDK4/6 inhibitor. I was previously on Ibrance and because I received 24 months of stability while taking Ibrance, we are going to see if adding Kisquali will help. We’re not willing to let go of Piqray yet and it’s not able to keep the cancer controlled on its own. So, we’re going to help it out a bit and see if that works before switching up treatments again.
  4. Since Kisquali can cause some heart issues, I’ll be getting regular EKGs to ensure that my heart is doing what it’s supposed to. Also, I’ll be getting more regular blood tests to monitor my liver function and magnesium levels. I’m sure I will get a really detailed education on this drug just as I have with all of the medication I’ve taken.

There are no contraindications with taking all of this medication together; at the same time, it’s not something that happens often. I told my doctor that if she wants to write a paper about our experiment, I want to be a co-author. The experiment has a short shelf life and we may have to make adjustments well before the regularly scheduled three (3) month scans.

Here we go …

Cancer and corona

I’ve never reblogged an article written by someone else before, but Kit has put into words the frustration I’ve been feeling for a while about the hype surrounding the corona virus!

👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻

Warning this blog discusses secondary/metastatic/stage 4 breast cancer and the impact of living with a compromised immune system during the corona …

Cancer and corona

Cancerversary #3, 2017-2020

Three (3) years ago today, when I was diagnosed with breast cancer, my doctor told me that two (2) to three (3) years was the median life expectancy I could expect. He did tell me that people with bone only metastasis could potentially look at a life expectancy of up to ten (10) years but that only unicorns/outliers made it that long. It was an incredibly difficult day for me and my family.

And now I’ve lived those three years since my diagnosis with MBC.

I’m at the end of the median life expectancy and it’s a weirdly uncomfortable feeling. On the one hand, I’m incredibly grateful for the time I’ve had and will have with my husband, my children, my family, my dear friends, and the amazing men and women I’ve met during the last three years. On the other hand, coming to the end of what I was told to expect is oddly terrifying and exhilarating all at once.

After three years, you’d think that I would have this cancer having thing figured out. I really don’t.

You’d also think I’d be super excited to have reached this milestone. Yet, I’m entirely ambivalent about it.

Yes, I’m incredibly blessed to have been able to reach this milestone and to be feeling as well as I am. No one is more aware of how amazing it is to have been able to live this long with a terminal illness, than I. And yet, I think survivors guilt comes into play with all the amazing men and women who are dying every day — approximately 116 men and women every single day in the United States. The more I get involved with the metastatic community, the more friends I’ve been connected with have died.

I have chosen to lean in, to connect with other cancer havers, to attend conferences, to learn, to advocate, and to immerse myself in this new world I’m living in. This has been my choice and all of these things have helped me to deal with my own diagnosis. I’m glad to have learned all I have learned; I’m far richer for connecting with all the amazing men and women over the past three years. Yes, cancer is a gigantic part of my life and it’s working for me as I deal with living with the specter of death looming over me.

And yet, the price of that immersion is loss. Losses that could be prevented. Losses that wouldn’t have happened if research into metastatic breast cancer was prioritized. Losses that shatter my heart over and over.

I read a statement when I was newly a mom that said something along the lines of: Having a child means having to live with part of your heart walking around outside your body. While getting close to another terminal patient is very different from the relationship between mother and child, this idea holds true for me. Getting close to other terminal patients does mean that parts of my heart are walking around outside my body with some precious human beings; human beings whose lives have been and will be cut drastically short.

At the end of three (3) years, I haven’t had any epiphanies; yes, my life is different and arguably better because of the choices we’ve made to avoid stress and unhealthy things, but I’m not of the opinion that cancer itself has made my life better. Cancer has irrevocably changed my life and dealing with those changes has affected every part of my life and the lives of everyone who is around me. Have those changes been for the better? Overall, I think most of the changes have been for the better, but due to the response we’ve had to my diagnosis, not because of cancer.

I have a 25%ish chance to live two more years. That’s my next goal line. And I’m going to be advocating and learning and living my best life every day until I get there.