Tag: #mbc

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.

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” 

Bucket list memories – who are the memories really for?

Do you have a bucket list? My guess is you do. Most people have ideas and dreams of things they want to see or accomplish before their time is up. I even wrote a post about bucket lists before my husband was diagnosed with cancer.

I have some items on my bucket list. But lately, I’ve been rethinking my idea of a bucket list. I still want to do some of those things in the link above (yes, I still want to go to the Ellen show and fly on a private plane). However, instead of making these memories for myself, I have come to realize it is the memories we make with our loved ones (be it family or friends) that will be how we are remembered.  

A year after JR died my oldest daughter graduated from college. To celebrate the fact that we all made it through the toughest year of our life the girls and I took a cruise. It was a time to get away from everything. What we discovered (aside from the fact that my snoring had gotten really bad) was that we weren’t really “cruise people.” I wanted to go on a cruise because it had been on my bucket list. JR had planned a cruise for our honeymoon, but plans had to be changed and he promised me for years that he would take me on a cruise one day. Unfortunately, that day never came and I shared this bucket list item with my girls instead.

If you were to ask the girls if they liked it they would say no. However, we did make some good memories on the trip. Like the boat ride where the dolphin played in the water beside us. Or their excursion at Roatan where they played with the monkeys. The mysterious midnight WiFi that brought us text messages even though we didn’t upgrade to the WiFi package. Watching Moana on a big screen at midnight in the middle of the ocean. And even the day we stayed on the ship when most got off (definitely one of the better days).

This weekend my youngest jokingly (but seriously) suggested I take her to Vegas to see the Jonas Brothers. She turned 21 last year and she just graduated from college a semester early. At first my reaction was “I don’t really want to go to Vegas”. The last time I was in Vegas was on my honeymoon. It would be bittersweet to go just a few weeks after what would be my husband and my 27th anniversary. But the more I have thought about it, the more I realize that I should go and make memories with her. Because when we are gone, the sweet memories are what get us through the days of sadness. And who better to make memories with than those you love the most in the world. 

So I’m going to dust off my bucket list and figure out who wants to make memories with me – memories that we can share now and they can use to reminisce when I’m gone (don’t worry, I don’t think that will be anytime soon – I have lots of items on my bucket list and adding more every day).

God’s gentle reminder to take out the trash

If you are new here, welcome. Several years ago I was talking with God. I wanted a sign, kind of like a hand signal, to remind me that He is around me and in control. Like a lot of conversations, I tried to lead it in the direction I wanted it to go. I was determined my sign would be a ladybug. I think I had just read a book where a ladybug was present at many crucial times. But as I was telling God I wanted the ladybug to be my sign, He gently whispered in my ear “Butterfly.” I really didn’t want a butterfly because it sounded so cliche. But there it was. And now, God’s sign to remind me that he is here with me and in control is the butterfly. What does that have to do with a rainy Friday in January, you ask?

Lately, I have been feeling a little out of sorts. Recently, the medication I take for metastatic breast cancer had to be changed because of some slight progression. I am still getting used to the new side effects from the medication which has not exactly been a joy ride. In addition, it is the height of Cedar season in Austin, and with an immune system that isn’t quite as strong as years past, I am struggling with allergies.

Today, God reminded me He is still with me and in control…

Friday is trash day. Last night, in the rain, I was taking the trash can out to the curb. When I pulled the can away from the wall, I noticed something on the wall. I didn’t think much about it. Mostly because it was 10 PM, it was chilly and raining and I just wanted to get the trash out to the street. I had procrastinated earlier in the evening, and then it started raining, so I procrastinated some more. Since it was raining, I knew I just needed to get the trash out and I would have time in the morning to get the recycle out.

In my neighborhood, the trash pickup comes earlier than the recycle. This morning, even though it is still chilly, I caught a break in the rain to get the recycle bin out to the street. I noticed, again, that there was something on the wall behind the trash and recycle bins. With a little more light this morning, I could see that it was a butterfly.

Butterfly
A gentle reminder from God

I don’t know about where you live, but in Austin, Texas you don’t really see a lot of butterflies in January.

There it was, attached to the wall. A butterfly. A gentle reminder from God. Nudging me to move the trash out of the way.

I have all sorts of trash that I allow to pile up. Whether it is my diagnosis and the recent progression, the loneliness of being a widow, the cedar fever, disagreements with friends over small things, or just plain old procrastination – be it taking out the trash or working on my book. All of these things pile up and I find myself separated from God.

But God always finds a way to reveal himself. Today it was ever so gently by placing a butterfly on a garage wall behind a trash can.

What kind of trash do you need to move so you can see God at work in your life?

Scanxiety – It is Real

I have scans coming up on Monday. These will be the first scans since my little “bump in the road” in June that caused me to have 10 shots of radiation to my spine in July.

I have mentioned before that scanxiety is real. I’ve lived on this roller coaster for 9 years. Until June, I had a nice long 7 year run with my friend “stable.”

During that those 7 years, I had scans every 4-5 months or about 3x a year. I had scanxiety, but it didn’t last long. Usually, I would get anxious about a day before and stay that way for a few days after – until I realized that the doctor wasn’t going to call, or I was able to get online and read the scan reports for myself and see the word “stable” at the bottom.

I had gotten really good at leaving the scanxiety behind and not letting it take over more than a few days and most of my friends didn’t even know when I was having scans. After all I didn’t want to be “that person” – you know the one that can only talk about their cancer.

This time is different. I started recognizing the signs of my scanxiety earlier than usual. Because after 7 years of stable, I did have that “bump in the road”. What if that bump becomes a pothole? What if they find another spot? What if it wasn’t just an anomaly?

My oncologist assures me that there are a lot of treatments out there that are available to me if we need to change my course of treatment. After all 7 years on one medication in the metastatic world is an anomaly all of its own.

So for the next few days, I’m going to try to not think about Monday morning and what the scans might show. My favorite youngest daughter will be home for the weekend and I plan to enjoy spending time with her.

I have been catching up on Gray’s Anatomy lately – which honestly as a cancer patient I really see all the flaws, but I watch it anyway. There was an episode where Catherine was talking to Bailey about living with cancer and always living in fear. At the end of the episode Catherine, Richard, Bailey, and Ben are riding in a limousine drinking champagne (or bubbly water for Richard) and eating greasy burgers. She tells them that is the way she wants to celebrate every scan – good or bad – from here on out. I LOVE THIS!

So who wants to go for a limo ride on Monday? The results will be what they will be, good or bad, nothing I can do about them now – I will just try my best to live beyond the scanxiety.

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