BuiltaLife

Offering hope to those on the path behind me

Bride and groom on their wedding day
Kim and J.R. Wedding Day 3/6/1993

Happy 32nd Anniversary. Wish you were here.

03/16/2025 / / 1 Comment

Last week I very quietly celebrated our 32nd wedding anniversary. Honestly, I acknowledged it when I woke up. I blew a kiss towards heaven and told him Happy Anniversary. There wasn’t much fanfare to the rest of the day.

I returned the previous Monday from a great trip to Florida. And frankly I was exhausted from the trip and from the two weeks of radiation I had undergone just before I left for Florida.

In past years I’ve tried to do something to celebrate the anniversary. A few years ago I went skydiving to celebrate the day.

Skydiving on our Wedding Anniversary

This year I didn’t have the energy to do much of anything. And that made me a little sad.

Recently, I was thinking of everything that has happened since J.R. died. I realized that I have been living with metastatic breast cancer longer without him than I did with him.

That hit like a ton of bricks.

When we first found out I had metastatic breast cancer it was October 2010. At that time, the statistics for survival with metastatic breast cancer were about 35 months. With advancement in treatments, the current 5-year relative survival rate for metastatic breast cancer is about 22%. In other words, 22% of those with metastatic breast cancer will live beyond 5 years.

So forgive me if I’m a little shocked some days when I tell people I have been living with metastatic breast cancer for 14 years. Yes. I’m an outlier. And I accept that. And most days I’m proud of that.

I’m not sure what made me do the math the other day. But in 2010, if you asked me or J.R. if we thought I would still be here in 2025, I would have laughed and said ‘No’. J.R. probably would have had a different reaction. He wouldn’t have laughed. He would have more likely said something along the lines of “we are going to do everything we can to try to make that happen.” I wouldn’t say he was an optimist. He was a trouble shooter, always trying to figure out a plan. Which is one reason I still find it hard to believe he died before me.

J.R. died in July 2016. Just shy of six years from my metastatic diagnosis. I’ve said before that it makes no sense that I am still here trying to figure out how to keep living, while he is gone. No one saw that coming in 2010.

So if you have done the math like me, I have now been living with metastatic breast cancer for almost nine years since he passed away. Some days it is hard to believe that to be true, and others it seems even longer.

But on our 32nd wedding anniversary, when I closed my eyes, I felt him whispering in my ear “Keep going. You’re doing great. I love you.” And I needed to hear that.

Black background with gold stars New Year New Med

New Year, New Oncologist, New Mutations, New Medications, ReNewed Hope

01/17/2025 / / 3 Comments

According to Bob Dylan, “There is nothing so stable as change.”

I have to agree. In my world of dealing with cancer, I am always pleasantly surprised when scans come back as stable. And a little anxious when something changes.

The reality of living with metastatic breast cancer is there will always be change.

2025 started with the opportunity to face change once again. In November, my regular scans showed no progression on the CT scan but the bone scan showed progression. Trying to get more definitive answers, my oncologist scheduled a PET scan.

December seemed to drag on far too long – between the wait to schedule the PET scan, and then waiting for the results, all while my oncologist was on the verge of retirement.

Then January came along with the opportunity to embrace change, again.

I met my new-to-me oncologist on January 3rd. I liked him from the moment he walked in the door. He had taken the time to be familiar with my history. Whether he discussed it with my previous oncologist (now retired from seeing Cancer patients) or read my very long file, he impressed me. And it takes a lot for a doctor to impress me.

After reviewing the results of the PET scan he suggested we do another test. Specifically a blood test to ascertain if there are mutations in the cancer cells. He explained that although I had previously had this type of blood test, at the time it was performed, my cancer was stable. He proposed now that the cancer was active again, as shown by the PET scan, the results may detect mutations not present when the cancer was not active and hoped it would open up other treatment opportunities.

To my prayer warriors who prayed I would be a mutant (IYKYK) – THANKS FOR ALWAYS BEING THERE FOR ME

The results are in. The oncologist was almost giddy (if an oncologist can be giddy) when he walked into the room and showed me there were 2 mutations. He told me he would have been happy with one, and that hardly anyone has TWO (even if it isn’t true, I love thinking I’m always beating this game).

The new doctor is learning he has a patient with a sense of humor. At our first meeting, he said, “You have been seeing Dr K for more than 20 years, and I’m coming in in the middle.” I immediately told him “I sure hope so.!” At this appointment, I enlightened him that I was a cancer unicorn and he graciously laughed. Living with metastatic breast cancer for 14 plus years, and now, not just one mutation, but two. I’m rocking this cancer unicorn thing!

I am feeling extremely optimistic about these new changes. First, finding a doctor who could have just come into the room and asked me to tell him my story without doing his research first, but didn’t. Second, that the doctor requested a mulligan on the blood test, hoping it would give us more information. Third, the results of the test have given us options in treating this pesky cancer.

New Year, New Oncologist, New Mutation, New Medication, ReNewed Hope

Once the insurance is sorted out, I will start my next line of treatment (is it number 8 or number 9? I really should look that up).

I’m forever grateful that organizations like Metavivor support breast cancer research. The drug I will be taking was approved by the FDA in January 2023 to treat ESR1 mutations (if you’d like to learn more about this mutation you can click here). Once again I am taking a medication that wasn’t available when I was first diagnosed in 2010. Without continued research, I would be left with fewer options and less hope.

Wrinkled T-shirt with the words Thriving in the chaos
I've worn this shirt through much of the chaos over the past eight years. It may be time to retire it.

Beyond Thriving in the Chaos to Thriving Every Day

10/25/2024 / / 3 Comments

This week, I attended an online writing summit. I had no expectations of what I might learn. I found out about the summit on my Instagram feed. They had a free registration, and I thought, “Why Not? I don’t have anything to lose.”

First, the entire summit was filled with amazing presentations, and I received excellent insights from each one I watched.

One session in particular made the entire summit worth my time investment. The presentation was titled “How to be a writer when you have a chronic illness.”

You might think “Is metastatic breast cancer a chronic illness?” Believe me when I say I have seen and had this debate. But, for the purpose of managing time and spoons, there are many similarities between metastatic breast cancer (especially after living with it for fourteen-plus years) and chronic illness.

The presenter, Sandra Postma, offered a different way to think about being a writer when living with a chronic illness. For example:

Write when you can. Write where you can. If you can’t write every day, be gentle with yourself. More importantly, she reminded the attendees, “We are worthy of living our best life.”

That statement made me search out her Instagram account and immediately follow her. Scrolling through her posts, one in particular stood out:

“Can I Thrive with a Chronic Illness? YES!”

In the caption, she asked the simple question, yet extremely difficult question

“What does thriving mean to you?”

That question haunted me all afternoon and evening. The next day during a live write-in session I unpacked the question further in my journal.

I realized I had never redefined “thriving” for myself since I was diagnosed with cancer. Or maybe not since J.R. had died.

Society tells us thriving may include a happy marriage, two and a half kids, a dog (or cat if that’s your thing), a well-paying job, and a nice car(s).

We were thriving as a family when I was diagnosed in 2003. I even continued to work during the original diagnosis at the well-paying job. We put cancer behind us after all of the chemo and the radiation. Even after taking Tamoxifen for 5 years, Cancer was our past. We were still thriving in the good old American societal way.

After I was diagnosed with metastatic breast cancer, we had to re-evaluate. At that point, my idea of thriving was living to see our daughters graduate from high school. With a median survival rate of 36 months, I would be lucky to see our oldest graduate.

After a few false starts with medications that didn’t work for me, we finally found one that was keeping the cancer cells in check. I had already watched our oldest graduate and I was well on my way to watching our youngest graduate from high school.

Then renal cancer decided to steal our version of thriving. We switched our idea again, now we wanted J.R. to see our youngest graduate from high school.

Graduation came and went. We both saw her graduate. I wouldn’t say we were thriving. Just a few months later, J.R. passed away. What should have been our time to thrive as empty-nesters was gone in a flash.

Over the past eight years, I have been living (not thriving) while waiting for the next thing to happen. I can’t say it wasn’t without cause: an infected hip prosthesis and subsequent surgery, progression requiring a change in medication, a broken femur, both of my in-laws passing away from cancer, spontaneous fractures in my spine, more progression and another change in medication, a hospital stay due to complications from the new medication, another change in medication, neuropathy from the medication, culminating in another change of medication, and finally four surgeries this year related to side effects of medications that have kept me alive for the past 21 years.

“What does thriving mean to me?”

For me, the definition of thriving is not how society defines it.

Kim’s idea of Thriving is a path to discovery.

In eight years, I have shied away from the opportunity to discover who Kim is. But Kim is more than a widow, a mother, or a daughter.

Through this process, I have defined Thriving as the freedom to discover who I am: what I like, and what I don’t like. Furthermore, it is a chance to shed my Enneagram 9 sloth-ness (as much as possible) that I have embraced like a badge of honor over the last eight years as a protection and recovery method.

If you know me, you know I love a good movie reference. I am proclaiming my Maggie Carpenter (Runaway Bride) era. I have already discovered I like fried eggs, preferably with a side of bacon, hash browns, and possibly some pancakes.

Now that I know what thriving means to me, I am ready to find my true, authentic self.

So tell me, what does thriving mean to you?

Have I Exceeded Expectations?

09/14/2024 / / 2 Comments

This week I had the “opportunity” to meet another new doctor.

Monday morning I woke up looking like Harry Potter after Hermoine cast a spell on him to disguise him from the snatchers (sorry for any spoiler alerts if you haven’t seen or read any Harry Potter books in the past 15 or so years).

This was the second time in six months I had to call my ophthalmologist after waking up with a red, swollen eye. My tear duct was infected. She prescribed antibiotics but told me I may need to see a specialist.

“Of course”, I thought. Why wouldn’t I need to see another specialist? A specialist I didn’t even know existed until Monday afternoon.

If anyone would have told me I would be meeting with a plastic surgeon, I would have laughed out loud. I have come to accept my scars and my wrinkles, I have earned every one of them. But this was a very special plastic surgeon. An oculoplastic surgeon, a plastic surgeon specializing in the eyes and face.

Amazingly, an appointment with the specialist was open on Thursday morning. If you are like my oldest daughter, you may think, it’s never a good sign when a specialist can see you that quickly. Spoiler alert, it turned out to be a great sign I was able to get an appointment that quickly.

First, my eye was still red and swollen, which made it easy for the doctor to identify my problem instantly.

Second, he immediately pulled out a pad of paper and wrote Acute dacryocystitis below the drawing of the anatomy of an eye. He explained the surgical procedure he could perform to prevent the infection from recurring.

Third, and this one shocked even me (although it really shouldn’t anymore) as we discussed my previous surgeries and history with metastatic breast cancer, he asked me if I had ever received Taxotere in my treatment. I had to pause and think for a moment, as I have had a lot of drugs during my 21 years of living with breast cancer. After going through the mental catalog of drugs I have taken, I finally remembered that Taxotere was one of the drugs I had during my original bout with cancer. When I acknowledged that I had indeed had the drug, he indicated he was testifying next month regarding Taxotere resulting in the side effect of Acute Dacryocystitis.

I left the doctor’s office grateful I had been referred to the practice. Specifically, the doctor with the knowledge to see, diagnose, treat, and identify the potential underlying cause of my recurring infections was the one who had the short-notice availability.

This morning, as I was processing that I would be having another surgery this year, it dawned on me that both of the surgeries are a direct result of side effects from drugs used to treat my breast cancer.

So it begs the question, from the perspective of doctors and caregivers, have I Exceeded Expectations?

Kim's Cancer Review

In October, I will be starting my 15th year of living with metastatic breast cancer. I would hazard a guess that I have exceeded expectations by some.

If I were to give myself a performance review I would have to include the following as a justification for selecting exceeding expectations:

  • Cancer took my hip. My hip was rebuilt with 3 prostheses.
  • An infection 7 years later required the infection/prostheses to be removed
  • I learned to walk without a hip. Still going strong 7 years later
  • Currently on my 7th line of treatment (a repeat of a drug that was very successful in the past – wait, yep, it was good for 7 years)
  • Surgery on my jaw for osteonecrosis – a known side effect of two drugs used in my treatment.
  • Now, I have an upcoming surgery, also seemingly from a known side effect of drugs used in my treatment over the years.

Too bad the job of living with metastatic breast cancer comes with no opportunity for a salary increase.

I do have some amazing “co-workers” – amazing doctors, nurses, physical therapists, and mostly, the other people I have met who, like me, are trying every day to exceed expectations living with metastatic breast cancer.

Hello – Quick Update about the last 6 months

06/20/2024 / / 7 Comments

I realize it has been a while since my last update. Was it really in November? Yes, I guess it was (I looked back at the date of my last posted update).

Let’s see. What has happened since November? Well a lot really, but some of it is not my story to tell, let me just say it has kept me busy.

As for me, I enjoyed my hiatus from treatment, but as we know, it was just a temporary hiatus.

I had scans in February. They were ambiguous. Which sent me to have a PET scan to determine if the ambiguity was in the reading or if any activity may be better seen and picked up with the PET.

The PET scan also came back ambiguous. [Insert sarcastic shocked face here.]

An unexpected (are they ever really expected, sometimes yes, sometimes no) area lit up on the PET scan which sent me down a crazy ride.

My lower right jaw lit up on the PET scan. I tried to convince the doctor it was just an infected area of bone growth my dentist had noticed. I already had an appointment with an oral surgeon to discuss what was going on.

As most good oncologists do, he wanted me to have it further looked at by an ENT. Just to make sure.

My dentist had referred me to an oral surgeon who believed it was osteonecrosis of the jaw, basically, bone cells that die and poke through your gum – it is amazing the vocabulary you learn when you are a cancer patient. He also suggested I see an ENT.

All roads lead to a visit with an ENT

My ENT appointment didn’t go as planned (yeah, I know, another shocked face emoji). The doctor I saw took one look in my jaw and told me that was not his specialty, but he knew a guy. In fact, the guy was his partner. He told me to wait there, and he would send in his partner to take a look. I ABSOLUTELY love a doctor who admits when something is not their expertise.

More discussion, more open your mouth wide. And then, let’s do surgery and send it off to pathology – you know, just in case.

Oh yeah, in the meantime, after several discussions, my oncologist and I came up with a new treatment plan. We agreed to give Xeloda a try again. If you don’t remember, I was on Xeloda for 7 years previously, but that was three years ago. Some research has shown that drugs can be effective again after a break. He agreed to try it again (maybe someday I will have my picture in a medical journal). So in February, after a short hiatus from medications, I started back on Xeloda.

And now for the rest of the story

After a few false starts, I finally had the surgery to remove the bone in my lower jaw on May 3rd. Due to the type of procedure done, I was on a liquid diet until he could schedule the follow-up surgery (I will spare you the details on that, just know there was no way to chew food).

As my luck would have it, I had my surgery at Ascension Seton in Austin. When I returned to the doctor the following week for my follow-up visit, and to get the results from the biopsy, I learned the Ascension systems had been hijacked. No biopsy results were available, and they weren’t scheduling any follow-up surgeries.

What I originally thought would be a 3-week liquid diet was now a 4-week liquid diet and the follow-up surgery was being performed at a different location (honestly, this second surgery was a breeze with their processes).

It wasn’t until this past Tuesday (June 18th for the record), that I finally got the biopsy results.

Good news! It was not cancer! It was, in fact, osteonecrosis. Thank you to Aredia (unknown number of doses when I was first diagnosed with metastatic breast cancer) and the one dose of Zometa that I had last year which has the unfortunate POTENTIAL side effect of osteonecrosis of the jaw.

So there you have it. I am currently on Xeloda. I had scans again last week and everything is stable. My jaw is healing nicely. Still a few stitches that annoy me but will dissolve soon enough and I can eat solid foods again.

Even with the two surgeries, 2024 is still better than 2023. Hope it continues. Until next time, if you see me out in the wild, say hello. I love to meet and see the people who are reading my story.

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