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.

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

24

I love 24, the TV show. Elliot and I stumbled upon it years ago when we were staying in a hotel and then we were addicted. We went back to the beginning and watched every single episode more than once. We were binge watching before we knew what that was!

And so, as I often do, I started thinking about applying the “lessons” of the show to living with metastatic breast cancer (MBC) and here are the results of my ruminations …

  1. Main characters die all the time. I think this was one of the most astonishing things about the show. New characters show up all the time and some of the ones everyone starts to like or hate die off every season. It was shocking when we were watching it the first time, now I compare that to the people who die every day of MBC, people who are necessary and important and who I grow to love. The world is poorer for their absence and yet nothing can be done in the near future to save their lives.
  2. As soon as one crisis is over, it’s on to the next. This idea is heightened in the fast paced hour at a time format of the show. I remember thinking, how could any one person deal with that many days of crisis, even if the days were separated by years of down time?  Fast forward and I live through days of crisis all the time now, where life and death are both possible and immediate.
  3. The people who are good in a crisis are often not good at relationships.  I think Jack Bauer is a quintessential example of someone everyone wants involved in a big crisis and yet he struggles to connect with others. An important reminder for those situations we all encounter when various friends can handle various things. Remembering to give everyone credit for their own strengths and not crucify them for their weaknesses is important. Doesn’t help with the hurt that results from the abandonment of friends.
  4. It is a rare person who acts in other’s best interests. At the end of the day, it’s a reliable fact that most people will act in their own best interests. And yet, there are people who are able to set aside what is best for them individually and act in the best interests of the whole. I’ve seen other patient advocates who demonstrate this day after day.
  5. Death happens and the world keeps moving. This is a hard one. It often feels as if the world should stop as we lose friend after friend at a rate of 116 men and women each day in the US. Yes, the world keeps moving but it is less bright and poorer for their absence.
  6. One day or one situation does not define an entire life. Just like a diagnosis of terminal cancer does not define my whole life. I, and the others with MBC, have lives outside of our cancer experiences and treatment. Important to remember.
  7. Your friends are the people who stick by you no matter what. True friends will indeed show up when you need them. It is those people who aren’t truly friends who walk when the going gets tough. The ability to tell the difference is key.
  8. When you are good at something, everyone knows. Competence is attractive on many levels and those who are good at something don’t usually have to advertise it.
  9. While I know Jack Bauer is a fictional character, I wonder how he would have dealt with a terminal cancer diagnosis? I often wonder about how others might handle this diagnosis, both real and imaginary people. Watching someone who is good at handling crisis makes me think that they might handle this kind of crisis; at the same time, an intense crisis is different from a chronic crisis.
  10. Why wouldn’t someone want to make a TV show about a metastatic cancer patient? We deal with more on a daily basis than most people would deal with in a life time and we often do so with a good attitude.

So there you have it, cancersplaining by Jack Bauer and the case of 24! Would you add anything specific?

How can I help?

I wrote a blog post recently that really resonated with a lot of people about how I feel about dear friends dying and how hard it really is to live with a terminal disease. Yes, despite some efforts to recast Stage IV metastatic breast Cancer as “chronic,” the rate of 116 men and women dying per day in the US of the disease clearly confirms that categorization as incorrect. Attempting to minimize the severity of the diagnosis will only backfire, in my opinion. Metastatic Breast Cancer (MBC) is a terminal diagnosis that limits the life expectancy of anyone diagnosed.

Anyway, several of the comments on my post pointed out that while I came clean (not an easy thing) and admitted that I indeed need help, I did not delineate how I would prefer that help be offered. In light of that input, I decided to sit down and create a list for those you who are interested. Feel free to disregard if you are not!

I’d like to take a moment and recognize Cheryl Kaufman, who when reading my blog post about needing help, she sent me a much appreciated box of goodies!

First of all, don’t overlook the power of simple questions like … how are you? I may not answer right away but I will eventually and the positive effect of knowing someone is thinking about me is profound. It’s not a bother to reach out. Also, there are specific times that my anxiety is increased, like when I have a new symptom or pain, or when I have a scan coming up, or when I’m starting a new medication. I try to alert people when these are coming, but it’s also not a bother to ask if someone is coming that would create additional struggles.

Secondly, advocacy and sharing information about Stage IV metastatic breast Cancer is huge. Sharing my story with others, encouraging people around you to take little known symptoms of breast cancer seriously, and suggesting that no one buy “pink” products that don’t help breast cancer patients, these are all good things everyone can do in their own communities. Sharing my blog or other posts about the actual experience of living with a terminal illness is another idea.

Third, I have a very restricted diet, so sending food could be problematic. We do order from Uber eats regularly, so a gift card would be extremely helpful. I also cannot eat sweets or carbs, but my kiddos love chocolate! Best advice in this category, probably not a great idea to send food.

Fourth, I love to read. I read every day. Mostly on my iPad or phone, but I also love to hold books in my hands. Sending me your favorite book or books would be amazing. I have a Goodreads profile with thousands of books read, so if you are thinking of getting me a book, feel free to friend me and see what I might not have read. Or ask!

Fifth, tickets to do something with the boys is a great option. I’m literally cleaning out my closets and drawers in my version of Swedish Death Cleaning, so sending me items is not usually helpful. They are extremely active and love to be outside and we have lots of options here in Florida. If in doubt, just ask!

Sixth, I get an infusion once a month and I love wearing socks because the infusion center is pretty cold. I also love wearing socks that have applicable sayings on the bottom. I’m sure one or two of you have seen some of the socks I have and you’ll know that I don’t mind sarcastic or profanity laden sayings. Socks are a great conversation starter in the infusion center! Just a note here, I don’t need any more slippers!!

Seventh, aromatherapy options. I do love candles and essential oils. Anything that is formulated for “calm” is a good idea. I do prefer doTerra as a company because of how they source and process the oils, generally. I can’t think of any specific oils or blends that I don’t like but when in doubt, ask! There are also some cool jewelry options too in order to carry such scents everywhere. This is especially key since I’m in and out of medical offices and infusion centers, etc, and it often doesn’t smell good.

Eighth, pajamas or yoga clothes. I somewhat tongue in cheek tell people that I no longer wear clothes. I’m either in pajamas all day, differentiating between nighttime and daytime pajamas, and I go to yoga three times a week. Can’t go wrong with comfy clothes! I also have tons of comfy blankets, some of which have been permanently stolen by my kiddos — so, blankets are not a need.

Ninth, I have lots of appointments and infusions. I often go to these appointments alone. While some appointments are ones that I need to attend alone, I’m usually open to someone coming along. Infusions, especially.

Tenth and finally, sometimes I need to talk about cancer. Sometimes that’s all I can think about. But I also need to be reminded often about how I still have a life to live and there are important topics outside of cancer. Parenting, for instance. Talking to people, engaging in the wider world, and focusing on something other than impeding death for me and my friends, is important.

I hope some or all of these suggestions are helpful for people who are interested in knowing how best to support me or someone else who has cancer. Remembering that we’re still here, we’re still human, and we still need community is literally the most important for anyone in a crisis like cancer. I’m not suggesting it’s easy, just as many important things worth doing aren’t.

When a friend is dying

Before my diagnosis of Stage IV Metastatic Breast Cancer (MBC) in 2017, death wasn’t a concept that had been a significant part of my life experiences. I lost a few grandparents and other extended family as I aged but they were elderly and ill and they were, arguably, ready to be done with living with their physical limitations.

Dealing with the constant death and decline in the MBC community is a very different thing. It’s not generally common within the expected life experience to receive a text from a thirty-something friend that reads something along these lines:

“I’m afraid I might be slowly starting to die.”

A variety of responses occurred to me. You see, those of who are also terminal, we think about this a lot. We talk about death and preparing for death a lot. Yet, for us too, when it’s more immediate for someone else, it’s both difficult to know what to say and it’s also triggering. Triggering our own fears and other feelings about death, our own death.

In this situation, I swallowed my own fear and complicated feelings about my own death and I entered into the discussion. I asked questions, I tried my best to empathize and then I got on Amazon and ordered her some things to make her feel more comfortable. As I’ve often said, I’m a do-er and I show most often love to those around me by doing/giving something.

And then I cried.

I cried for my friend, her family, her friends and I cried because this isn’t the last conversation I will have with someone with the same disease that I have about how their death is imminent. I cried for myself and my children and my family because before long, that will be me. I cried because the world will be less bright when my friend leaves. I cried because so many people and companies don’t allocate resources and services the way they should for terminal patients. I cried and cried.

After I cried until there were no more tears left, it was my instinct to simply curl up and sleep the day away. It was my instinct to withdraw from the support groups where I interact with patients who are actively dying. It was my instinct not to say anything, not to reach out for help.

Why?

Even after nearly three (3) years of living with terminal cancer, I still find it hard to ask for help. Any kind of help. My mom is really good at intuiting that I need something; much better than I am and I appreciate that. I think others around me don’t often know when I’m struggling or how to help. I know that I often project that I don’t need help and that means I don’t experience the help that could be offered to me.

And I know that addressing a problem begins with admitting there is an issue.

With that in mind, it’s true, I need help. I’m dying. My life won’t end tomorrow or even next week or even, God willing, next year. But I have a less than 25% chance of living two (2) more years. It’s a sobering reality that I live with every day and I talk about with others who are metastatic, but I don’t always remember that healthy people need to hear this too.

I’m a capable, resilient person and it kills me to admit that I can’t do everything, but it’s true, I can’t. I also know that when others are given the opportunity to love on others, to meet the needs of a member of their community, it truly is a win for everyone. I’ve done my best to do that for my community and I’m used to jumping in to help. I just need to remind myself that asking for help is not a bad thing and that there are others out there who love to help as much as I do.

Asking for help doesn’t equal failure in some way, it just means acknowledging the fact that we’re human and humans need help.

Does anyone know if there is a support group for people who don’t like asking for help? Asking for a friend …

Perspective

I flew to Philadelphia in April of this year (2019) for the Living Beyond Breast Cancer (LBBC) Conference. This means I flew from Miami to Philadelphia and then returned. I noticed from the air that the coast looks so very similar no matter where you are. The buildings and trees, the ocean, etc. From thirty thousand feet, nuances are blurry and the large outlines look the same.

That got me thinking about how my outlook on life has changed irrevocably since my diagnosis with stage IV metastatic breast cancer in 2017.

The formal definition is as follows:

perspective | per·spec·tive |  \ pər-ˈspek-tiv  \

1a: a mental view or prospect to gain a broader perspective on the international scene Current Biography

b: a visible sceneespecially  : one giving a distinctive impression of distance : VISTA

2a: the interrelation in which a subject or its parts are mentally viewed places the issues in proper perspectivealso  : POINT OF VIEW

b: the capacity to view things in their true relations or relative importance trying to maintain my perspective

3: the appearance to the eye of objects in respect to their relative distance and positions

4a: the technique or process of representing on a plane or curved surface the spatial relation of objects as they might appear to the eyespecifically  : representation in a drawing or painting of parallel lines as converging in order to give the illusion of depth and distance

b: a picture in perspective

I think the different definitions taken together underline and emphasize that the position of the observer and the observed makes a big difference. It may sound trite; at the same time, I have found that looking at any situation from a variety of points of view can provide clarity.

That’s not to say that it’s easy to adjust your perspective. In a stressful or difficult situation, I find that my ability to put myself in another’s shoes is significant compromised.Nearly impossible. Yet, when the intensity of the moment has passed, then the usefulness of examining the stressful situation from other points of view comes into play. I can’t say that I’m an expert, but I do try my best to examine the situation from alternative points of view. I see far more when I make this effort.How has your perspective changed over time?

Health Union Connexion Conference 2019

I arrived on a cold (at least cold for this Florida-girl) and blustery day in Philadelphia for the HU Connexion Conference in October of 2019. This is the third conference of this kind for the parent company behind advancedbreastcancer.net, (aka ABC) which I write for.

Health Union, LLC owns and operates more than twenty disease specific websites. ABC is just one example. During the conference, we learned more about the values that undergird everything that Health Union does along with why.

There are those companies who put forth a pretty picture of their culture without the commitment to implement what needs to happen to get there. In my experience, Health Union walks the walk and talks the talk.

During the conference, we had a chance to meet with the others in attendance for our specific site.

I can’t express enough how working with kind, genuine people who are willing to engage with patients who are terminal. We’ve lost contributors in the time I’ve been working with ABC (since May of 2019) and I’m sure we will lose more. I don’t know how a healthy person is able to do that.

And yet they do and I’m grateful.