BuiltaLife

Offering hope to those on the path behind me

Tag: #breastcancer (Page 2 of 4)

Black and white picture of Kim
This is my celebration face - getting NED scans 11 years after MBC Diagnosis

How Does One Celebrate NED after 11 years living with Metastatic Breast Cancer?

04/24/2022 / / 0 Comments

This week I shared a tweet. I don’t tweet a lot, so I was surprised when I last looked at my notifications and it had over 400 likes.

I mostly use Twitter to follow and interact with other cancer peeps. In fact, one of the main reasons I stayed engaged on Twitter was because of the #BCSM (Breast Cancer Social Media) group chat. Between weekly chats, people sometimes post questions and breast cancer peeps chime in with answers or recommendations.

I enjoy the anonymity of Twitter vs. Facebook. So there are some things I only share on Facebook, to close friends and family. And then I share cancer-related things on Twitter (please don’t judge me on where I share news, sometimes it is just easier to share with people who don’t ask 1,000 questions).

The news I shared this week was actually good news:

Tweeting leaves room for interpretation since there are limited characters. And sarcasm can be lost in translation.

It seemed very tongue in cheek for me to ask if a report says there is no evidence of disease am I still metastatic?

Of course, I am still metastatic. Black and white picture of Kim

That is the burden of metastatic breast cancer. I will continue to take drugs (currently Verzenio and Faslodex) as long as the medications work.

In response to my tweet, I had many people respond with “Congratulations!” or “I’m so happy for you!” Others tried to explain what it means to be metastatic – or what NED actually means. Since my question was more tongue in cheek, I just skimmed past most of those.

You may ask why did I not share this good news on Facebook with family and friends.

2022 has had its fill of ups and downs. This is certainly an up, however, the same week I got these results, my father-in-law was diagnosed with cancer and immediately put on hospice.

If you have read any of my previous posts this year, you will also know that my mother-in-law passed away from cancer in January. And then there is the non-cancer-related struggle related to breaking my femur in December when both of my in-laws were in and out of the hospital related to their illnesses.

As the tweet states, this is the first time in 11 years my scans have stated “no evidence of disease (NED)”. It would be hard to still be here 11 years after a diagnosis and not have had good news in the past. But in the past, I used to tell friends “these scans brought to you by the letter S for Stable.”

The change to NED or NEAD (no evidence of active disease) from Stable does not change my life much.

I will continue to get my monthly Faslodex shots and take my daily doses of Verzenio until a future scan shows progression (hopefully, not for a long time, but I still live scan to scan).

Doing a happy dance, as was suggested by Twitter peeps, is all well and good, but seemed ill-timed as we waited on news on my father-in-law. Also, with a broken femur, the snoopy happy dance is a little difficult.

At this point, while I am happy about the news, the person I would most like to celebrate with has been gone for almost 6 years. He is now reunited with his mom and dad in heaven, or the afterworld, or whatever you choose to believe/call it.

And I’m still here scratching my head wondering “what now?”

The book I have been writing off and on for several years is still calling to me. I feel obligated (yes, obligated) to make the most of this extra time that I continue to receive. I have researched some online fiction writing classes to help me finish the book and hopefully figure out how to get it published.

If you have other ideas on how I should be celebrating this news in the midst of everything else, please feel free to share your ideas.

A Broken Femur is No Joke – 4/1/22 Update

04/01/2022 / / 2 Comments

Just a quick word of advice: Don’t break your femur.

Really. It is a long recovery. And frankly, I’m tired of it.

Kim sitting on couch in waiting room with leg on ottoman
Waiting to see the doctor in the fancy “waiting room”
Photo credit: Jennifer R

Today I saw my orthopedist again. And while the news really wasn’t bad, I left a little discouraged. I’m ready to put this behind me and move forward. Even if it meant another surgery, I was mentally prepared for that because I have that much trust in my surgeon and I know that I have recovered from worse. If having a small setback (like surgery to replace the hip and knee) in order to get me to where I want to be is what it takes, I was ready to go all in.

But that is not the direction the appointment took today.

Honestly, again, the news wasn’t bad. After looking at the X-rays he said there was some improvement in the bone calcification. We discussed how much weight I was putting on my left leg (we even measured it on the scale in the office) and tested my flexion (he gave me 80 degrees which is better than the 70 last time – so yes, I have been doing my exercises).

Break here for laughter: When the PA asked if that was all, the doctor, sitting on his rolling stool with his legs spread, said he could probably get it to 90 and I looked him dead in the eye and I said “you might be able to but I would probably kick you and you are not in a good position for that.” We all laughed and he rolled his stool back quickly.

When I mentioned the numbness that sometimes wakes me up at night the doctor suggested we get a total bone scan. I mentioned I had one scheduled for the end of April, but we are now pushing that up. And, just for good measure, they are throwing in an MRI to make sure there is nothing else that could be causing the numbness.

After I asked about PT, he somewhat grudgingly (in my opinion) agreed to let me start with strict instructions not to put more than 50 lbs of weight on my leg. Additionally, I asked about using forearm crutches, as the walker is really starting to get old. Short answer: No. Longer answer: Maybe in 2 more months (long answer as in time, not really a long answer)

I’m happy I am finally going to start PT. At least it will feel like I’m doing something towards moving forward. The past 4 months of being a couch potato and not being able to do much has been hard for someone who doesn’t like to just sit around (not having a hip didn’t even slow me down this much – I was working on using a cane in March after a December surgery).

March 1, 2018 – 1st time walking with a cane after hip was surgically removed in December 2017

Obviously I’m not going to be running any marathons or even a 5K anytime soon, but honestly, I wasn’t doing that before I broke my femur – but I do miss taking Guin to the lake and walking the trails. And I think she misses the outdoor excursions, too.

I have 2 months before I go back (unless something weird shows up on the bone scan or MRI). Hoping there will be even more bone healing in that time, especially with the weight-bearing and PT.

After 2 surgeries and a few setbacks with cancer, you might think I would be used to this “hurry up and wait” scenario.

KIm and Guin after a walk around the Lake (2021)

However, when you are living every day to stay ahead of metastatic breast cancer, it is tough to not be able to do things like walk the dog.

Goodbye Ann…Another friend lost to Metastatic Breast Cancer

06/17/2020 / / 2 Comments
Beth, Cathy, Ann and KIm attending Art Bra Austin 2019
L to R: Beth, Cathy, Ann and, Kim at the BCRC Art Bra Austin 2019 Fundraiser

This week I learned a new term. Anticipatory Grief. You may have already determined that anticipatory grief occurs while a loved one is still alive, but their death is imminent. 

This would have been helpful information 4 years ago as we watched JR and my dad both slip away. It certainly helps me understand the anger I had during June and July 2016. 

I learned the term this week while attending an online Breast Cancer conference hosted by Living Beyond Breast Cancer. There was a session called “Coping with Collective Grief” and the speaker, Kelly Grosklags, spoke about this “new to me” term. 

It helped me understand my feelings this week (as well as those feelings from 4 years ago). You see, today we lost another to Metastatic Breast Cancer. A beautiful, fun, brilliant, witty woman gone too soon.

I met Ann while attending a support group for women with metastatic breast cancer at the Breast Cancer Resource Center.  She was everything I am not: outspoken and loud. Not in an obnoxious way.

She had a sharp wit and a sense of humor that you couldn’t help but love. After going to meetings for a few months I became friends with Ann, Beth, and Cathy. Sometimes we would go to lunch after a meeting, go out for drinks or just sit out on my patio and enjoy a beverage and snacks (pre-Covid). 

I loved talking with Ann, she had stories that could make your belly hurt from laughing. Or she could bring you to tears. 

We have known this day was coming ever since she decided her body was tired from treatments. But until last Tuesday I was still in denial. I had seen her a couple of times since March (on Zoom calls) and she was holding her own. 

But when the text came last week to come see her it seemed urgent. When we arrived she was in bed, no energy to get up and the spark in her eyes, while still there was just a little dimmer. 

Thankfully we were able to see her while she was still coherent enough to recognize us and even engage for a bit. And for that, I will be forever grateful. 

Having watched JR go through the process of dying, I knew when I left that her time here was short. And I was glad I had dropped what I was doing to go spend a few hours with Ann and my other “bosom buddies” Later that week we received an update on her caringbridge site that she was not receiving any more visitors and she was sleeping most of the time. 

This week I have been anxious every time I open my email. Anticipating the final journal entry. Today, it came.

You will be missed, Ann. I’m so glad I got to know you, even if it was through this damn thing we call metastatic breast cancer

My Story The next chapter waiting to be written

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

03/02/2020 / / 0 Comments

“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?

choose joy

A daily reminder to Choose Joy as I start each day

02/25/2020 / / 0 Comments

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?

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