Offering hope to those on the path behind me

Tag: #cancer

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

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.

Grief’s Most Precious Gift and Other things I’ve learned

Grief – it doesn’t ever go away. Five years ago this week my dad and my husband died 4 days apart. A little of me died that week as well. It is gut-wrenching to lose one of the male figures in your life, but to lose them both within 4 days was rough .

Earlier this week I read a blog post from Nancy’s Point titled What do you do with grief at five (or more) years out?.

Grief was not something I read about until I had to face it on my own. I never understood it. And honestly, it is one of those concepts that you can never truly understand until you are thrust into it (much like having cancer, but that’s another story).

I am blessed in that I was a grown adult before my grandparents died. In fact, I was married with kids of my own when 3 of 4 of them died (my maternal grandfather died before I was born).

When my dad and my husband died I realized I didn’t know how to process grief. And 5 years later I’m not sure if I’m any better at it.

When two deaths come so closely together, it may be referred to as compound grief. In short, compounded grief, also known as cumulative grief, is a pile-on effect of grief or “grief overload.” It may mean losing several loved ones in a short period of time (https://www.funeralbasics.org/what-is-compounded-grief/)

Compound grief can also represent when many losses pile up over time.

To add to the compound grief of 2 losses in a short period of time, my youngest daughter left for college less than a month later. You can see why some of my friends recommended I see a therapist.

Then there is the other elephant in the grief room…I have been living with metastatic breast cancer since October 2010. I never realized, until therapy, that I should have been dealing with grief related to all of the losses that come as a result of a terminal cancer diagnosis. [To understand more about these losses, you might want to read what my Twitter friend Abigail discusses in her blog titled “Little Deaths”]

Instead of facing the grief, I trudged on. For almost 6 years. I didn’t know how to process those losses and I probably made relationships more difficult than they had to be. But I digress.

Although I didn’t see that therapist long, I did learn I was handling my grief in an acceptable manner (ie I learned that everyone grieves differently and there is no right or wrong way to grieve).

This week, as I thought about the past 5 years, I wrote a list of all the ups and downs.

When I started listing everything I expected tears, as all of these things happened without my husband by my side (the good and the bad). But the tears didn’t come. Instead, there were some smiles as I reminisced about things I had forgotten. And I shook my head as I thought about more things I have overcome.

The UPs and DOWNs since July 24th, 2016:

  • My youngest started college – Aug 2016
  • I signed a contract to begin building a new home – Aug 2016
  • A friend unexpectedly passed away – Sept 2016
  • The friend’s funeral was held on my husband’s birthday, a day we had originally set aside to spread his ashes – Oct 2016
  • Spent our first Christmas in New York with my brother – Dec 2016
  • Buried my dad at Arlington National Cemetary – Dec 2016
  • My new house was completed and I moved in – March 2017 (March 6th was our wedding anniversary, I’ve always considered my house as a final anniversary present).
  • My oldest graduated from TCU (my alma mater)- May 2017
  • Took my daughters on our first (and maybe last) cruise to celebrate graduation and surviving the past year – May 2017
  • My daughters went to Malawi on a Mission trip with drops of grace – July 2017
  • My oldest daughter started grad school at Angelo State (my husband’s alma mater) – Aug 2017
  • Spent 10 days in the hospital due to my hip developing an infection, surgery to remove all the hardware – Dec 2017
  • 40 days of high dose antibiotics to rid my body of infection and LOTS of Physical therapy – January and onward 2018
  • Drove to the Outer Banks (OBX), North Carolina to “help” my brother get his new house ready for rentals – July 2018
  • My nephew got married – September 2018
  • Threw axes, flew a plane and got my first tattoo all to celebrate my husband’s birthday – Oct 2018
  • Participated in NaNoWriMo (National Novel Writing Month) and wrote more than 50,000 words on a book (one I’m still working on) – Nov 2018
  • My oldest got a dog (cutest little corgi, australian shepherd mix ever) – Dec 2018
  • My mom finally (at age 79) officially retired – Jan 2019
  • I attendended my step brother’s wedding in the same chapel we had my dad’s funeral – Mar 2019
  • I strutted down a runway in a bra to raise money for the BCRC – June 2019
  • Slight progression with a new Met to my spine, necessitating a biopsy and radiation – June 2019
  • My youngest went to Malawi for a second time with the drops gang – July 2019
  • Took my mom to my brother’s house in OBX – July 2019
  • Stand up paddle boarding – no hip and all – Aug 2019
  • My oldest graduated from grad school and moved to South Carolina to start her first job – Aug 2019
  • Another scare of mets to spine, but turned out to be a herniated disc – YEAH!?! – Aug 2019
  • Went on a Casting for Recovery retreat and learned how to fly fish – Nov 2019
  • Got my dog, Guin – Nov 2019
  • More mets showed up on scan, time to say goodbye to meds that had kept me stable for 7 years – Nov 2019
  • My step-brother and his wife had their first baby – Nov 2019
  • My youngest finished college (in 3 1/2 years, might I add) – Dec 2019
  • Graduation party for youngest (who knew that would be the last big party for the foreseeable future?) – Feb 2020
  • A Pandemic shut down the world – March 2020
  • Started working out with Camp Gladiator (CG) vitrually – May 2020
  • My youngest finally walked the stage to get her diploma (watched it virtually, thanks pandemic) – Aug 2020
  • More paddle boarding (thanks CG for building my strength) – Aug 2020
  • My nephew and his wife welcomed their first baby – Oct 2020
  • A trip to Lost Maples for my husband’s birthday – Oct 2020
  • Annual trip to OBX – October 2020 (this may be my new favorite time to go to the beach)
  • My youngest moved home – Jan 2021
  • Snow in Texas – Jan 2021
  • Snowpocalypse, including 3 days of no electricity and a record breaking number of days below freezing – Feb 2021
  • My first skydiving event – Mar 2021
  • My step-brother and his wife welcomed baby #2 – May 2021
  • I celebrated 55. – July 2021

What do the next 5 years hold? Who knows! I have learned I can’t predict the future, but at least I know what I have learned from the past 5 years:

  1. Life goes on. Whether you want it to or not. My daughter left for college and I signed a contract to build a new house within one month of my husband’s death. The sun came out and the moon rose each day. Some days I wanted to yell and scream at the fact that the world did not stop and give me time to process everything that had happened. But instead, I had to learn to process it as the pages on the calendar continued to turn.
  2. I’ve said it before and I will say it until my last breath. I have some of the most amazing people in my life. Friends CAN help you get through the toughest times. I have friends that will allow me to be myself – even if that means that 5 years later I still get emotional (which happens and is OK). I 100% recommneding finding friends who allow you to be yourself – even at your worst.
  3. The old adage “You are stronger than you think” is true. I just wish sometimes I didn’t have to be the poster child for it.
  4. In the beginning, when people told me “you will get through this and even smile again” I wanted to punch them in the face (thankfully I had access to a punching bag and hit the bag instead). How dare they say I will smile again. But, I discovered that you can find joy even when you are grieving. And at some point (everyone is different) you will discover that even when you are grieving you find yourself laughing. And you realize they were right.
  5. I have done a lot in the last 5 years. It took me writing a list to realize just how much. But as I made the list, I discovered something unexpected. There are things on this list I probably would not have done if I hadn’t challenged myself to deal with grief and discover who I am without my husband. One of the most precious gifts of grief has been discovering myself – and knowing my husband is cheering for me to keep discovering.

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