BuiltaLife

Offering hope to those on the path behind me

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5 days of needles in the arms
5 days of getting poked by needles

A funny thing happened on the way to Infusion

03/07/2023 / / 3 Comments

At least I can laugh as I reflect on the last 5 days.

For those of you new to my story a VERY brief recap. I was diagnosed with metastatic breast cancer in 2010 and have been “Lucky” to keep all of my progression in my bones: left hip, ribs, and various locations in my spine.

IYKYK

In my last post I mentioned starting a new infusion drug. I was scheduled to start Enhertu on Thursday. Due to known complications with the heart and Enhertu, I first had to have an Echocardiogram, STAT. The echo was completed on Wednesday morning but the “STAT read” didn’t get passed along to the radiologist (all this unbeknownst to me until I arrived at the infusion center Thursday morning).

I checked in on Thursday at Texas Oncology ready to get my first infusion of Enhertu.

  • Lab work – check
  • Echo – Not received, continuously checking with Radiologist.
  • Review blood work.
Red Flag #1

Red Flag #1, my bloodwork showed high levels of calcium which required an infusion of a drug to bring the calcium back in the normal range. Additionally, there was concern about my fluid levels.

While I sat (un) patiently receiving fluids and Zometa, the nurse assigned to me kept me updated regarding the echo. Which turned out to not be much of an update – they discovered it had not been read by the radiologist and they were still trying to get it read and sent over for my doctor to approve the Enhertu infusion.

We arrived at the infusion room at noon Thursday. My last update came at approximately 3 PM. The scan was still MIA. There was not enough time to start the pre-drugs and get the Enhertu infused before closing time (one of the downfalls I guess at not getting an infusion at a hospital).

We were told they would continue to pester the Radiologist and get the scan results with the final approval by my oncologist.

Friday morning

I finally received positive news. The echo was read by both the radiologist and my oncologist. We got a Thumbs UP. Yea! Today would be the day.

After a quite painful start to the day, I was bound to get to the infusion chair and get things going. As we got close to the exit to the medical facility my phone rang.

“So sorry, Kim, Infusion is backed up and there is no chair for you today. We can schedule you for Monday at 10:15.” Sigh…

Turn around, pick up a delicious sub from Thundercloud Subs in Austin, and head home believing Monday would be my day!

Saturday

Saturday. My pain was not getting better. That pain I mentioned starting on Friday was now hitting 7,8, or 9 on the pain scale (again, IYKYK). A friend graciously drove me to the Emergency Room and we arrived about 4 PM. After an hour-long MRI, the news was fractures in my spine (new since my last scans on 2/20). The fractures certainly explained the pain I was experiencing.

I had some of the best nurses during my hospital stay, both in the ER and once I was admitted into a room. And they kept the pain under control. The neurosurgeon I saw Sunday morning agreed it was important for me to get the new infusion started and since my pain was down to a tolerable level, he discharged me to go home Sunday with the understanding I would be fitted for a back brace and he would follow up with my oncologist to discuss options.

March 6th was my 30th Wedding Anniversary. What a way to spend the day.

Monday Morning Recap:

  • Arrive at 10 AM atTexas Oncology to discover the elevator was out of service (note I am using a walker and a back brace)
  • Lab work is done on the first floor to accommodate those who can’t get upstairs.
  • If an infusion is scheduled to last 4 or more hours, they recommended rescheduling.
  • When I told my friend/driver that the nurse suggested rescheduling I said I was getting up those stairs one way or another. The song “Don’t Back Down” by Tom Petty rang in my ears. As I stood at the top of the stairs “Rocky’s Theme Song” bounced off the concrete walls in my off-key humming voice.
Red Flag #2

A lot happened sitting in the infusion chair:

  • My blood work showed signs the calcium improved (YEA!!!), but my potassium was low (Boo!!!) The low potassium resulted in a doctor needing to sign off on everything to approve the Enhertu infusion.
  • While we sat and waited for news, a lady across from me had a reaction to her infusion. Without going into detail, 3 nurses and a doctor came to see what needed to be done. The doctor was, of course, the one that would be reading my reports since my regular oncologist was out of the office.
  • Finally close to noon, the reprieve came, the doctor signed off on the infusion and the nurse was able to put the drip line in. And no, at this point I don’t have a port, but that is under consideration.
  • The pre-meds began flowing and then the long-awaited Enhertu began flowing.
  • Sadly, the potassium could not be administered at the same time as the Enhertu. At 2:45 the Enhertu had finished, with no reactions (Yea!!!! again)
  • The potassium drip started close to 3 PM. Around 5 PM I was disconnected from all fluids and released to go home.
  • The elevator still not working, I channeled the Rocky Theme song again and made it down the stairs. Day over, Enhertu was successfully administered, now it is time to see what Side Effects will appear.

Thanks for Joining me on this adventure

I may be creating a care calendar since I’m not sure when I will be able to drive due to my back brace and pain pills. I apologize this post is so long and if you are still reading this, Thank You, I appreciate you!

Thank You, Next – Goodbye Verzenio

02/26/2023 / / 9 Comments

Last April I asked How Does One Celebrate NED after 11 years living with Metastatic Breast Cancer?

With a crazy 2022, somehow I did not have scans after my very successful April scans until November. The November scans were not as celebratory as April’s.

When cancer patients say they live in 3-6 month increments, this is what they mean. In November the scans showed new metastasis in my spine and a rib.

We treated the new spots with radiation in December. The fifth time I have had radiation since 2004 when I had radiation the first time: my breast/lymph nodes (2004), my hip (2010), a rib (2012), and another spot in my spine (2019), spine and rib (2022).

When radiation was complete, my doctor hoped we could get a little more time from the Verzenio by increasing the dosage. That did not prove to be a good plan. My body did not tolerate the increased dosage and we had to readjust the plan.

Last week I had scans again. Verzenio has officially submitted its resignation papers. More spots showed up on my spine. (Again, I am thankful there were no spots in my organs, my type of cancer seems to love feeding on my bones).

As I put Verzenio behind me, I am slightly anxious about the next drug. Switching to something new takes a while to discover what side effects will decide to try to take me down. In the meantime, I have to have an echocardiogram before the new drug can be started.

For the first time since 2004, I will be receiving my treatment via IV instead of oral medication, which will also be an adjustment for me. For 12 years I have been on oral medications.

I have learned a lot over the past 12 years. But now it is time to say “Thank You, Next” to Verzenio and the oral treatments.

In anticipation of the change in medication, I updated the words to “Thank You, Next” by Ariana Grande to represent my relationship with cancer drugs instead of boyfriends.

Thought I’d end it with Chemo
But the cancer came back
Tried a few new drugs
But they just laughed
Had a great run with Xeloda
And for that, I’m so thankful
Wish I could say “thank you” to Verzenio
‘Cause it gave me 3 years

One taught me persistence
One taught me patience
And one taught me pain
Now, I’m so amazing
Say I’ve lived and I’m fighting
But that’s not what I see
So, look what I got
Look at what you taught me
And for that, I say

Thank you, next (next)
Thank you, next (next)
Thank you, next
I’m so grateful for my ex (medications)

Thank you, next (next)
Thank you, next (next)
Thank you, next (next)
I’m so

Spend more time with my chemo friends
I ain’t worried ’bout nothin’
Plus, I’ve got a new med waitin’
We’re hoping’ for better outcomes
I know they say we won’t know fast
But here’s hoping this one gon’ last
‘Cause her name is Kim
And I’m so good with that (so good with that)

If I’m Keeping Score with Cancer: Radiation 4, Bone Mets 0 – Let’s get to 5-0

12/04/2022 / / 0 Comments

Monday I start a 10-day regimen of radiation. This will be the 5th time I undergo radiation treatment for metastatic breast cancer (MBC)

In April I shared I was not sure how to “celebrate” being NEAD, or No Evidence of Active Disease. Especially after living with MBC for eleven-plus years. Not to mention the passing of two family members within months, even days (January and April) to other forms of cancer.

I never did “celebrate” the NEAD news.

It didn’t feel appropriate. Honestly, it didn’t even feel real. Living with MBC means you are just waiting for the next scan results.

For me, during these past 12 years (yes, I hit the 12-year mark in October), I have accepted “Stable” as “good news”. However “good news” is not what others might think. “Good news” for me means there is no progression -at the time of the scan – and there is no need to change medication.

The results from my November scans were not “good news”

…but the results were not “bad news” either. It is inevitable there will be progression when you live with MBC. In my case, the scans showed new lesions on my spine and in my ribs.

Skeleton with Christmas lights wrapped around. Caption It's Fine. I'm Fine. Everything's Fine
Living with Bone Mets. Everything’s Fine

When I met with my oncologist, I reminded him what he told me in 2010 – as long as we keep it in my bones, we are good – that probably isn’t a direct quote but close enough.

For now, we continue to fight with radiation to stop the lesions from getting any larger (and hopefully manage some of the pain that comes with bone mets). My radiation oncologist and I are optimistic, based on past experiences with radiation, my body will respond well to the 10 days of treatment.

The oral medication I have been taking for three years has managed to keep everything else at bay so the current plan is to increase the dosage if my body can tolerate it, and hopefully, nothing new shows up on the next scans.

Bring on 2023.

May the radiation and new medication dosage continue to bring “good news” for quite a while

P.S. GO FROGS. Super excited to watch the #3 Horned Frogs play Michigan in the Fiesta Bowl on New Year’s Eve.

TCU Football College Football Playoff
Go Frogs – Beat Michigan
photo cred: TCU Football

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.

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