Offering hope to those on the path behind me

Tag: #metastaticbreastcancer (Page 1 of 5)

Invisible or Visible – the Realities of living with MBC

In 2010 when I was diagnosed with Metastatic Breast Cancer, I was shocked, dismayed, annoyed, angry, stunned, and overwhelmed. Even though in the back of my head I already knew when the oncologist’s office called and said the words “Your cancer has metastasized.” I sat outside of the office building where I was working, called my husband, and cried while I sat and waited for him to drive the 20 minutes to pick me up. I knew the statistics of people (not just women get breast cancer) living beyond five years with metastatic breast cancer was not great. As I sat there crying, I was scared I would not see my kids graduate from high school, much less college.

Youngest graduating from High School
Oldest graduating from College #GoFrogs

As many of you know who have followed me on this blog, or who know me in person, after several tests and scans, my doctor told me that it was good news (in the cancer sense) that the metastasis was only in my bones. In other words, since it was not in any organs I was fortunate. There was a chance I would see my kids graduate.

For the record, breast cancer most often spreads, or metastasizes, to the bones, liver, lungs, and brain- you can learn more about metastatic breast cancer here.

Since October 2010, I have been on six different medications:

  • Arimidex (10/10 – 12/11)
  • Faslodex (1/12-4/12)
  • Xeolda (5/12 -11/19)
  • Verzenio with a shot of Faslodex (12/19 – 2/23)
  • Enhertu (3/23 – 4/23)
  • Taxol (began 5/23 and currently still receiving weekly infusions).
  • In addition, I also received an infusion of Aredia monthly from 1/11 – 3/13 and then every 6 months for 10 doses. Aredia was used to treat bone damage and reduce excess calcium levels in the blood.

The thing that Arimedex, Xeloda, and Verzenio have in common is they are pils. Other than having to go into the clinic monthly (or sometimes every six weeks) to receive the Faslodex shots when that was part of the regimen, get blood work, and see the doctor, my cancer treatment was a once or twice daily pill(s). There were no outward visible signs that I was receiving treatment for MBC. The side effects of the drugs, while different, were not visible to the general observer.

Each change in medication was a result of progression to my bones, meaning there was more bone that the cancer was attacking. Radiation helps stop the cancer from growing and reduce the pain. Over the years, I have received radiation on my hip, ribs, and spine (more than once, different vertebrae). These drugs have helped keep the metastasis in my bones and I have not had any metastasis to organs, which remains good news.

Why am I recounting all of this?

In all of those years, my cancer has not been what many would consider Visible.

What do I mean by that?

Cancer that has metastasized to the bones is hidden from the outside observer. Unless you know me in person and know my story, the only outward, visible sign of my cancer was that I walked with a limp from my first hip surgery, Then, after my second hip surgery, I used a shoe with a lift and walked with a cane. These outward signs could have (and have been numerous times over the years) been attributed by others to many things besides cancer.

Again, you may ask, why are you recounting all of this?

2023, as Miley Cyrus sings “Came in like a wrecking ball.” Actually, it started in November of 2022, when my scans once again showed there was progression in my spine. Unfortunately, I’m all too familiar with what that means. If you haven’t kept up with the blog (and that’s ok) but want to read more about all that transpired in March/April/May/June you can read more about March, April, May, and May/June

First, radiation. Second, we discuss options for treatment. Since I had been on Verzenio for three years somewhat successfully, my doctor wanted to extend the use after radiation by increasing the dosage. Within the first week, my body was unable to tolerate the higher dosage. This meant another change in medication.

As I mentioned above, for 12 years, my treatment has mostly been in the form of a pill of some kind. Unfortunately, that is no longer an option for me. We have run out of pill options. The options for me now are infusions. Depending on the drug it could be weekly, as it is currently, or every three weeks is another typical time frame. It all depends upon the drug.

Suddenly, to those not aware of the fact that I have been on some kind of treatment for 12 years, my cancer is Visible.

Kim wearing a maroon jumpsuit while attending her niece's wedding. Walker in background.
At my niece’s wedding this August.

I look more like a cancer patient now as the Taxol has made me lose my hair. The fall I took in late May has caused me to use a walker which (maybe just to me) makes me look more frail.

I didn’t really understand this until my oldest daughter pointed it out. She reminded me that most people do not/have not understood that I have been in treatment for 12 years as there were not any outward Visible signs of cancer. I have a few people in my life who understand this. But, honestly, most do not.

The truth is I am continually explaining to people that Metastatic Breast Cancer is never cured. Just because I didn’t look sick, doesn’t mean I wasn’t still battling the MBC beast that has chosen to attack my body.

October is on the horizon, which has a lot of triggers for me. Both of my diagnoses came on October 8th, 7 years apart.

I ask that if you are still reading this post, first Thank You, and second if you plan to donate to breast cancer research please look at 100% of donations go to fund research for metastatic breast cancer, which helps me continue to fight this devastating disease.

If after reading this you have any questions, I am an open book. Please ask. I will do my best to answer any questions you have.

Finally a (somewhat) Positive Update

Update. In case you were wondering, I’m still here. I know it has been about a month since the last update. The good news is I am doing better than in March and April.

As I wrote in my last update, the Enhertu was not a good fit. So now I have moved on to a new treatment, weekly Taxol infusions. I had my first infusion last week.

I am happy to report I had no noticeable side effects from the first infusion. From what I understand, the lower dosage of weekly infusions may even mean I get to keep (what is left of) my hair. But only time will tell. And if that is the worst of it, then so be it. Could you send me all your hats to wear, just in case?

And in case you were wondering did the Enhertu at least do something helpful?

Last week, I had my 3-month scans. The doctor said “Well, if we had still been planning on Enhertu, we probably would change course” or at least something along those lines.

Honestly, they weren’t bad/ But they also didn’t show any improvement. The CT was still clear for any progression in the organs. The doctor even commented how he liked to share with other patients about how he had one patient that has been living with bone mets for 12 plus years (don’t worry, he doesn’t use my name or share any HIPPA information, just tries to be encouraging which is one reason I have trusted this man for 20 years). My lungs must have looked better, too, since he dialed back the steroids I’ve been taking for the paracentesis (caused by the Enhertu).

The bone scan, however, showed 2 more lesions in my spine (I feel like the incredible shrinking woman these days – gone are my days of saying I’m 5’6″). So this new May scan will become the baseline for the new treatment. The good news, I’m not feeling any pain with the new spots, so that is a win in my book right now.

How is my mental health?

I will be honest, March really took a toll. April I started to feel a little better. Now, while I feel like I am on the right path, it is hard to jump right back to where I was. I’m still a little anxious that another bone may spontaneously break. I’m definitely more cautious in my walking and I’m still building my strength back from the full month of not being able to do anything.

I have started back to Physical Therapy and am happy that the PTA I’ve been working with since 2017 has now moved to a location much closer to me and I don’t have to explain all of my history to someone new. She has been amazing to work with over the years and we work well together with “Can you do this?” and my response “I don’t know but let’s try!” Sometimes it works and sometimes it doesn’t. And then we try something else.

In a nutshell. I am back to driving (which if you know me is one of the best things for my mental health). I am no longer using a back brace. Pain medication is back in the medicine cabinet, not on the kitchen counter. Working on building my walking confidence back, slowly but surely. Getting weekly infusions, hopefully with minimal side effects as we move forward. And ready to get back to enjoying life again.

March Madness – It’s Not Just for Basketball

Basketballs bouncing
My March Cancer Madness
Big Changes Happening
My March Cancer Madness

I’m not a huge College Basketball fan. But I do love March Madness. I always root for a Cinderella team. Every year, my daughters will vouch for me, when filling out my bracket, I will choose a #12 team, maybe more than one depending on how I’m feeling or who they are going up against.

I like an underdog. I like the never give up fight teams have when they either win or go home. Full disclosure, with everything going on I did not complete a bracket this year. However, I feel certain it would have been busted with the way the games have gone so far. But my favorite team, TCU is still dancing. #GoFrogs

My March Madness started with a hospital stay, broken vertebrae, and a new drug to treat my metastatic breast cancer which we discovered had progressed in February.

If you haven’t read my previous update you might want to read that before finishing this one.

Kim and JR
Kim and JR

My wedding anniversary was not spent the way I usually like to spend it. For the past six years, I tried to have something to look forward to, some kind of adventure or just a fun way to acknowledge the love that didn’t die when my husband passed away.

After a long day receiving my new infusion, I headed home. Still in pain from the broken vertebrae, and praying the side effects from Enhertu would not be bad.

How (or what) are the side effects of your new drug?


I have no idea with all of the other drugs I’m on for pain and dealing with the broken vertebrae. I hope to have a better answer to that question after infusion #2.


My light at the end of the tunnel was knowing I had a follow-up appointment with my orthopedic oncologist, Dr. Williams, on March 10th. The follow-up was supposed to be about my femur. But I knew once he saw me with a back brace, using a walker, and a pain level of 9, the appointment would be more than a question of my femur.

He didn’t disappoint.

As the PA pulled up the MRI images, he asked me to tell him what was going on. It was the first time I had seen the MRI results from the hospital visit. As he explained what he was seeing, it was obvious why I was in so much pain. The pain stemmed from the 2 broken vertebrae. But also from the fact that there were only 4 total vertebrae (2 of which were broken), that did not have cancer in them.

To get the pain under control, Dr. Williams recommended radiation of the entire thoracic region and Kyphoplasty. After explaining I had radiation in December on the T9, and that was my 5th time to have radiation in 12 years, the next step was to set up the Kyphoplasty.

This is where the Madness begins to pick up speed.

Friday 3/10

  • Saw Orthopedic Onclogosist (OO).
  • He recommended Kyphoplasty and called my regular oncologist (RO)to ensure the team was all on the same page.
  • As I left the office OO called in a prescription for extended-release pain medication.
  • Walgreens called at 5 PM to inform me they were unable to fill the prescription at my preferred location. Told me I needed to contact my doctor to have it moved to a different location.
  • Could not get through to on-call doctor with OO.
  • Called the on-call dr at the RO office. Explained the situation with the medication. Since I could not remember what it was, he could only send in a prescription for a previous pain medication I was on (not an extended-release, but would hopefully get me through the weekend)
  • Received a message from Walgreens the medication called in by the RO office was on hold for an insurance review

Saturday/Sunday 3/11 and 3/12

  • No news from Walgreens on either prescription

Monday 3/13

  • Called the OO office for assistance with the extended-relief prescription
  • Called Austin Radiological Association (ARA) to schedule Kyphoplasty. Spoke to seven different people to get the opportunity to leave a message with who I could only hope was the correct person to schedule.
  • Received an email from the ARA scheduler, advising they had received the referral, however, the doctor was not in the office that week. The email indicated I would need to schedule a telemed visit on 3/22.
  • Walgreens called at 5 PM to tell me a prescription was ready for pickup. It turned out to be the extended-release they were unable to fill on Friday.

Tuesday 3/14

  • Received a call from Seton Ascension scheduler around 8:45 am to schedule the Kyphoplasty procedure. (Note at this point I was not sure why there were two different organizations involved in scheduling the Kyphoplasty, but I was just wanting to get it done and relieve my pain – I was willing to go wherever I could get in the soonest).
  • An appointment for Kyphoplasty was set up for 8:30 am Friday (3/17)
  • Received a second phone call around 1 PM from Seton Ascension canceling the Kyphoplasty and indicating ARA would be contacting me.
  • Reached out to both OO and RO offices to try to get additional information and clarification about which organization I should be talking to.
  • Walgreens called at 5 PM to tell me a medication was ready to be picked up. This time it was the prescription called in by the RO on-call doctor on Friday evening.

Wednesday 3/15

  • Received a message from the RO office indicating the Kyphoplasty would be through ARA and, although they tried to get an earlier appointment; Wednesday 3/22 was the earliest telemed visit they could schedule.
  • Received a message from ARA the appointment on 3/22 was confirmed and informed the Dr would review my previous images, meet with me via telemed, decide if Kyphoplasty or another procedure would be necessary, and consult with my RO (and possibly OO). After it was determined what procedure is necessary, ARA would get the approval from insurance and then schedule the procedure the week of 3/27.

Thursday 3/16

  • Finally getting adjusted to the pain meds and am feeling somewhat functional.
  • Mostly trying to recover from the mental exhaustion, as well as the physical exhaustion from the broken vertebrae.
  • Did have to stay up past 11 PM to watch the TCU Horned Frogs win 72-70 over Arizona State. It was a good thing I had already had a good report on my echocardiogram.

Friday 3/17

  • In all of the other chaos, I had scheduled a follow-up with the neurologist who saw me in the hospital. The office called to cancel the appointment saying it looked like I was getting the care I needed.
  • Received a phone call from a new doctor’s office to set up a telemed visit for the placement of a port-o-cath to make infusions of Enhertu a little easier. Although this isn’t required, as Enhertu is not considered chemo and therefore not hard on the veins, after everything I had been through it seemed like a good idea.
  • Received a second phone call to schedule the port insertion for 3/21.
  • Rescheduled the 2nd infusion of Enhertu for 3/27.

Upcoming week 3/20- 3/24

  • Two telemed visits
  • One trip to the hospital for day surgery
  • Keep fingers and toes crossed that the telemed visit with the Kyphoplasty dr will yield an appointment for the procedure to be done the week of 3/27 – And yes, if they want to schedule it on 3/27 I will reschedule the infusion of Enhertu after the Kyphoplasty procedure

I’m exhausted just reliving all of that and looking toward the next week.

I will leave you with one piece of good news from my orthopedic oncologist. In his words, there is nothing pushing on the spinal cord to cause paralysis.

A funny thing happened on the way to Infusion

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.


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. 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!

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

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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