Offering hope to those on the path behind me

Tag: #metastaticbreastcancer (Page 3 of 5)

Cancer, Grief, and COVID19 – The Isolation Trifecta

Isolation. A feeling we most certainly can all understand in our current circumstance. #StayHomeStaySafe #CoronaVirus #COVID19

It seems every post on social media these days is a reminder of what is going on in the world. And rightfully so. Everyone is scared and feeling the walls closing in.

Cancer

When I was first diagnosed with cancer in 2003, I was not prepared for the feeling of isolation. Even when people were surrounding me, there was still that feeling of isolation. The words “you have cancer” floated around my brain constantly. And while others tried to share their own experiences with cancer, this new path was one I had to walk alone. Don’t get me wrong, my husband and many friends were there. But it felt like I was running a marathon by myself and they were all on the sidewalks, behind barricades cheering me on. The treatments were mine alone to bear.

In 2010, when I was diagnosed with metastatic breast cancer, the feeling of isolation came back with a vengeance. This time the isolation was more tangible. I was unable to walk because of where the cancer had attacked. My husband would get me situated on the couch or in one of the recliners before he would leave for work. At lunch, either he would come or he would make arrangements for a friend or family member to come over and keep me company for a while. But then it was back to work. I was alone, while the kids were at school and he was at work, left to wonder what this new life was going to look like.

For me, metastatic cancer came with a new set of physical challenges. But also mental challenges. At home with nothing but time on my hands, I discovered the average life expectancy was 36 months after being diagnosed with metastatic breast cancer (thankfully I have far exceeded that life expectancy, but I had no way to know that at the time). Friends and family once again rallied around us, but the isolation sat heavy in my soul.

Grief

Similarly, when my father passed away and then four days later my husband passed away, I was surrounded by friends and family. There to lift me up, to give me a shoulder to cry on, or to make sure that I had food to eat. But again, it was the times in the middle of the night, when I was unable to sleep that I found so isolating. Even going out with friends was hard. Most of my friends are happily married. I never felt more isolated than going to dinner with a group of happily married couples when I was now a widow. I have gotten better at being in those situations, but there are still times when that pain of isolation will rise up and make me understand what I lost when I see the looks that pass between husbands and wives who have known each other for decades.

COVID 19 – The trifecta of Isolation

In some way, I feel like I have been in preparation for the isolation brought on by COVID. But, it is just a little different. This one is being felt by everyone in some way.

And yet, even this new circumstance brings about a different feeling about grief and isolation.

During each of the previous life events, there were people around me. Helping me. Comforting me. Bringing me meals, sitting with me at doctor’s appointments, in the hospital, at the funerals, driving me to appointments, cleaning my house. They were sharing in my isolation as much as I would allow.

COVID 19 has reignited the feeling of isolation that I have struggled to overcome in the last few years. The isolation and grief from a cancer diagnosis, to loss of my father and my husband.

I have discovered I have a love/hate relationship with social media. Facebook, Twitter, and Instagram are my connection to the outside world right now, however, the posts also remind me of the other things I have lost: my husband; my limited mobility (makes it really hard to do things I used to be able to do easily), even my healthy immune system.

Thanks to my metastatic cancer and a compromised immune system, I have not left my house, other than to take the dog for a walk or go to my oncologist appointment, since March 18th. Days upon days of no contact with friends and family except via phones/computers.

The physical isolation is hard. But the reminders of the emotional isolation of past experiences is like ripping a bandaid off a wound that hasn’t finished healing.

If you, like me, are feeling the isolation from cancer, grief, or COVID I have found the following help me get out of my isolation funk:

Papers burning in fire pit
After writing down the things causing anxiety, burn them and let them go
  • Keep a pen and paper or some kind of notebook on your nightstand. When I can’t sleep it is usually because I need to process what is going on, no better way to do that than to write it down.
    • If what you have written is something you don’t want others to read, I have also found that burning the pages in my fire pit is very therapeutic.
  • Go for a walk or run (I don’t run, but you might enjoy it)
  • Find a good exercise video or sign up with a virtual trainer (I just signed up with Camp Gladiator for a 6-week challenge – all classes are on Zoom). Sweating out the frustrations has always helped reset my mind.

What have you found to help you not feel so isolated?

Good News – it needs to be shared not just during a pandemic

Tell me something good! (Who remembers Shaka Khan signing this? Because everyone has heard of Shaka Khan after Season 3 of The Masked Singer)

We seem to all be looking for the good news these days. If you don’t believe me, just ask John Krasinski. He made a video about “Some Good News” and he even speaks with his friend Steve Carell which made us all happy. If you haven’t seen the video, click here (I promise it is worth your time).

This week I also shared some of my own good news. And for those of you who follow me, yes, it has to do with my latest scan results.

I shared this post on my personal Facebook page.

Even though I shared this news during the #StayHomeStaySafe pandemic, I was still shocked at the number of likes and comments I received.

Granted, people are usually happy for me when I post good news about my scans. But this week I heard from people who I haven’t heard from in years even though we are friends on Facebook.

It doesn’t bother me that most people on my friend list don’t comment on my posts. I have close to 500 “Facebook friends”, but honestly I probably interact with about 75-80 regularly. I usually receive a lot of likes when I post good news regarding my cancer. But this time I got over 150 likes and about 50 or more comments.

After 9 plus years of living with metastatic cancer, I understand not everyone is as concerned as I am about my latest scans, especially since I get them every 3-4 months.

Since last June my two previous scans had both shown progression. The results from my latest scan showed some of the spots from the past 2 scans were actually smaller, which means the new medication is working. Yes, I am doing my own happy dance (I even pulled out Just Dance 2016 on Xbox to do some at-home exercise – whew, it’s a good thing no one is recording that).

I would postulate good news is not just what we need today, but we need to do a better job of celebrating good news on a daily basis. Now and going forward.

So tell me something good! I really do want to celebrate with you.

Own Your Story – the chapters already written AND the chapters waiting to be written

“Like the story you’ve been given because it’s not going to change” 

I was listening to an interview recently and the interviewee (Sally Clarkson) made this comment. (I’m not going to lie, I have never read anything by Sally Clarkson, but I subscribed to her podcast after listening to her in the interview. I loved her energy and her insight.)

At first, I was like “Yep! Own it!” 

Then I let it percolate some more. 

Did you ever read those books as a kid (or maybe played the computer games) where you had a choice about how the story would go? Every choice you made in the book or game, would determine where the story was going to take you. Every time it could be different based on the choices you make.

Those books/games mimic life. Every day I get the opportunity to make choices that help determine where my story is going. 
While what Sally said still resonates with me and I do (mostly) agree with it, I also believe my story is not fully written.

Sally is right. The past chapters of my life are not going to change. Even if I don’t like it, I have to own it. I was dealt a hand that if I had not gone all-in (in life and living), I would have folded and walked away from the table. But life is a precious gift, not something to walk away from.

The more I pondered this quote, it reminded me of a book by Adam Hamilton that I read several years ago. “Why? Making Sense of God’s Will.” There was a subsection in one of the chapters titled “Is the Story of Your Life Already Written, or Is It a Work in Progress?”

I was going through a tough time when someone gave me this book. After reading it, I wrote my own interpretation about God being “The Great Architect” – I would post a link but it was on another platform that I don’t use any longer so here is an excerpt:

My interpretation, after reading the book, is that God has a blueprint.  I’m not an architect (nor have I played one on TV as the old commercial goes), but I do know that a blueprint is a plan, a starting point.  Thinking in terms of building a home, it is easy for a new homeowner to think “oh, I would like to be able to put the refrigerator over there” after seeing the walls go up.  A thought like that can have several different impacts to the architect.  If you put the refrigerator there, we can’t put the sink here and the stove won’t fit there.  The cabinets that were ordered may not fit.  Or perhaps while looking through design magazines the excited homeowner sees a new design that they want to incorporate. While these changes may seem small to the owner, the architect is behind the scenes adjusting the blueprints so that the new homeowner’s vision becomes seamless. In this scenario, I am the homeowner and God is the architect.  Decisions by me, or even by those around me that may impact me, or perhaps even a force of nature like a tornado or fire, change the plans.  God takes the decisions/events in our lives and makes adjustments to the blueprints.  It is our choice to look at the new blueprints and decide if we like the new design.  God can take the challenges and the decisions that may not have been in the original plans and turn them into something beautiful. Every day the new blueprint is placed before us, we have to make the decision to accept the changes or throw them out.

(P.S. This was written many years ago and instead of editing I am reposting an actual excerpt from the original post)

So, yes, I do agree with Sally that we must embrace the story that is already written. But I believe I also have the chance to embrace the story that is still being written and make it even better than the one in my rearview mirror.

Are you embracing the story that has been written? How are you embracing the past to write the story that is yet to be written?

A daily reminder to Choose Joy as I start each day

My house has one of those weird art niches. It is in a strange place. Only I see it regularly.

There is a small alcove that leads to the master bedroom. The niche is directly across from my bedroom door. Unless someone intentionally steps into the alcove, no one knows it is even there.

I’ve never really known what I should put in the niche. I’ve tried several things, but nothing has ever truly resonated and I am always looking for the next right thing to inspire me.

Recently I made a big decision in my life. Making the decision released in me the chance to rediscover who I am.

I’m not going to lie. I am not a minimalist. I have a collection of penguins that rivals the Antarctic (well, maybe not, but you get the point). I like to see things that remind me of who I am and where I have been. Yes, Marie Kondo, these things do spark Joy in me.

When I was moving things around in my garage in an attempt to organize it (still a work in progress), I found a small display shelf that was my husband’s. I had been searching on Wayfair and other sites for shelves that would fit inside the niche and there was one just sitting in my garage.

Choose Joy Niche
A daily reminder to Choose Joy

I started gathering small things from around the house that as Marie Kondo says, “Sparks Joy”. A clock my grandfather made for me, a Choose Joy sign I made at a lettering class with some friends, a few penguins, a butterfly watercolor that I made at another class (can you tell I’ve been exploring my creative side?), a frog made from one of my husband’s shirts after he passed away, a ceramic horned frog a friend gave me when I was accepted at TCU, another TCU stuffed animal, and a collection of fly fishing ties I received when I went on a retreat with Casting for Recovery.

Each morning when I walk out of my bedroom I see these things. They remind me where I have come from, who I have loved, and that I am still a work in progress like the butterfly.

Finally, I am reminded each morning to Choose Joy.

How do you remind yourself to find Joy every day?

Is “Living a Great Story” enough to make the story worthy of sharing?

“You should tell your story.” I can’t count the number of times I’ve heard that. 

But what is my story and who really wants to hear it? More importantly, what can people learn from my story?

I have been hesitant to take the next step as far as writing a book or searching for places to speak about my story. In my head, I don’t have the answer to the questions that I think people want to hear.

  • How do you get up and face the day?
  • How can you keep a positive attitude about life and what’s around the next corner?

 If I don’t have a good answer should I stand in front of people who are looking at me expectantly and just shrug when the questions start?

This past week I had to fill out an application. I was applying to be a model for the Breast Cancer Resource Center’s (BCRC) annual gala/fundraising event: ArtBra Austin

One of the questions asked the applicant to write a brief bio (in 3rd person). I stared at the screen for a solid 15 minutes. I started to write something and then hit the delete button. Then I did it again. And again and again. I finally texted a friend who was also applying and asked what she wrote. As most people would, she started with “xxxxx was born and raised in such and such, Tx”. She went on to say where she went to college and what kind of career she had. 

I started typing “Kim was born in Germany”. Delete. 

“Kim was raised in the military”. Delete

Was that really the story I wanted to say in my bio? I had to discern what really makes Kim, well, Kim. What would an audience want to know about this woman walking down a runway, in a bra, with a slight limp?

Obviously I had breast cancer because you can’t be a model unless you have been a client of the BCRC. But what else makes me unique? Do they want to know the details of the limp – thank you metastatic breast cancer. Or that I have been metastatic for 9 plus years?

After much consternation, I decided to briefly state that I have been metastatic since 2010 and then wrote about my daughters (no explanation of the limp but that’s another story). I followed with a quick sentence about finding new opportunities to express myself through writing. (I mean I am trying to tell my story through this blog and I have a very rough draft of my first attempt to write fiction). 

When it was all said and done, I was not pleased with the bio but it was sufficient for what I was doing. But once again it got me thinking about what is my story and who really wants to know more. 

Live a Great Story Sticker
#LiveAGreatStory

If you were to drive around Austin, you might notice stickers on cars or even signs around town that say  “Live a great story” (you can learn more about that here). I love the simple, yet profound, words. Although I’m trying to tell my story through words, I realize my story is not about cancer or grief. My story is made up of so many more things that have helped shape who I am and how I have persevered through some of the ugly to continue to have the opportunity every day to “Live a great story”. 

My story is still being written. Maybe not eloquently. But every day I can get up, be present and ask “what will I do today to continue the story of Kim?” And maybe I don’t have to have the answer to those questions. Maybe by seeing me “living a great story” it is enough to encourage those on the path behind me that sometimes just getting up and being present is enough. And maybe, it will give them the strength to ask themselves “What can I do to continue my story?”

Now excuse me while I go order some of those stickers to remind me and those that I encounter to “live a great story” 

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