Offering hope to those on the path behind me

Keep charging ahead when you hear the Unexpected

What do you do when you get unexpected news?

I’ve lived through hearing the news I wasn’t expecting more than once. If you have followed me for any amount of time, you know that to be true.

This week I heard news again that was unexpected.

This time it was different.

This time it wasn’t bad news.

It wasn’t ” you have cancer.” It wasn’t “your husband has cancer.” It wasn’t your father, or your mother-in-law, or your father-in-law has cancer.

Pondering unexpected news

This time the news was good-ish.

I’m still processing the news, so forgive me if I seem confused.

First, let’s go back in time for just a minute. In May, I started Taxol. One of the main side effects we were concerned with was neuropathy.

As time progressed, the neuropathy in my feet was getting worse. Since walking is already challenging enough with a lift, the idea of the neuropathy getting worse, or even developing into drop-foot, was something we were anxious to prevent.

From May through September of this year, I had 19 Taxol treatments.

The last infusion was 9/26/23. Officially, the doctor and I decided together, on 10/18/23, that I would not continue with the Taxol due to the neuropathy.

This past Monday I had an appointment with my oncologist. I went into the appointment with the expectation of discussing “what’s next.”

I am starting my 14th year of riding this same roller coaster.

Sometimes there has been new construction, and new loops or twists have been added, but the roller coaster has had one constant: I was always on some kind of treatment.

Monday the conversation took a new turn.

After discussing the latest scans, which showed everything to be stable, the discussion turned to what’s next. We also recently had blood work done to determine if there are any genetic discrepancies that would suggest a “best option” treatment.

The report came back without any clear-cut suggestions for a new treatment.

Our conversation continued after discussing the results of the scans and the bloodwork. And while we both agreed the most ideal option would have been another pill, there are currently no new pill options available.

After some back and forth, my oncologist finally suggested we don’t do any treatment. For the next couple of months, I will go into the office monthly, get bloodwork, and see either the oncologist or the nurse practitioner.

If something feels off, I am supposed to call the oncologist. But at this point, I am officially off of treatment for the next few months.

I do not know how I feel about this. I have always said, “I will be on treatment until it doesn’t work and then we move to the next one.” This deliberate, no treatment break feels very odd.

While I am grateful. I am also very apprehensive.

The past year has been one of the hardest. Maybe because it is the most recent when I really think about some of the things I’ve gone through in 13 years.

Perhaps this unexpected news is a great opportunity for my body to recover. Perhaps the Taxol will continue to work for months to come.

Shine and Sparkle, as a Unicorn

Hopefully, I can shine and sparkle while I try to hold onto my unicorn status.

For now, I will charge forward. For only time will tell how this plays out.

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 Metavivor.org. 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.

A Box of Chocolates, Morton Salt, or an Unrelenting Roller Coaster

I’ve been trying to figure out the correct analogy to start this post.

Feel free to choose from the following:

  • “Life is like a box of chocolates, you never know what you’re gonna get” – Forrest Gump
  • “When it rains, it pours” – Morton Salt
  • I used to really like roller coasters until I was riding one that never stopped. – ME

My last update was more good news than bad, at least in my opinion. We changed drugs since the last one put me in the hospital with pneumonitis. I posted the update on May 15th, and three days later I fell and broke my tibia.

I have been using a full leg brace for the past five weeks. Next week I will get more X-rays done and see how the healing is progressing. Hopefully, my leg has healed well and I will be able to kick the brace to the curb.

What caused me to fall, you might ask.

Well, during the hectic March/April/May time frame I began experiencing some lightheadedness/dizziness. Apparently, I had a dizzy spell, and when I opened my eyes, I was on the floor with bruises and a broken tibia.

Between the weekly taxol treatments, we have been trying to figure out what could be causing the dizziness. I have gotten everything checked out:

  • Brain MRI – check – the one time you want to hear “unremarkable” when it comes to your brain (IYKYK)
  • Cardiologist – check – echocardiogram – strong heart, no problems
  • Doppler Ultrasound of port – check – no blood clots or issues with port

The good news is none of these showed any cause for my lightheadedness. The bad news is none of these showed any cause for my lightheadedness.

I have had fewer “episodes” of the lightheadedness, so I’m hoping that it is a remnant of the Enhertu and the morphine and it is just taking a while for my system to reset.

In the meantime, I’m back to using the walker for my broken leg and for the extra support during times of lightheadedness.

As for the Taxol, I have had to skip treatments twice due to my counts being too low. This means, this past week, they lowered the dosage. Every drug I have been on we have had to lower the dosage, so this was not a huge shock to me.

Fingers crossed

  • the lower dosage will not knock my counts too low and I will be able to continue the weekly schedule.
  • The lightheadedness continues to dissipate and I become more steady on my own
  • My tibia has healed enough to remove the brace and start building strength back (AGAIN!)

Oh, and last but not least, I have a cool summer haircut, thanks to Taxol.

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.

Not every cancer drug is a miracle for everyone

The reality of cancer is not pretty.

I’ve said it before. I have had a fairly easy time with the drugs that I’ve been prescribed to keep my cancer at bay. From seven years of successful treatment on one drug to three years of successful treatment on another. Neither of which caused me difficult side effects.

But the past month and a half have reminded me that it really isn’t always that easy.

You may remember in late February I received the news that there was more progression in my bones. The first weekend in March I ended up in the hospital only to discover I had 2 broken vertebrae that were causing excruciating pain. After being released, I started on my first infusion of what is currently being hailed as the next big drug for breast cancer, Enhertu.

Between the pain in my spine from the broken vertebrae and the side effects of the new drug (nausea, vomiting, headache, loss of appetite, fatigue/exhaustion) I was not sure what I had signed up for.

After the first infusion, I had a procedure to insert a port-a-cath (a device to make it easier to receive drugs instead of having an IV every time I receive the treatment). Followed by a second procedure, Kyphoplasty, to repair the broken vertebrae.

The second infusion did not go much better as far as the side effects. In fact, I think it was worse than the first one. More nausea, vomiting, fatigue, exhaustion, etc. In fact, I even had to have a blood transfusion because my hemoglobin was extremely low.

Second trip to Emergency Room this year

Last week I noticed that my breathing was labored after just walking to the kitchen from my bedroom. I also had a slight cough when I couldn’t quite catch my breath. On Friday, I went to the doctor with these symptoms and was immediately sent to the Emergency Room.

A common risk associated with Enhertu is pneumonitis. After a CT in the ER, unfortunately, the ER doctor and the hospitalist thought it was pneumonia. I argued with them and tried to show them the documentation I had brought with me from my oncologist’s office. They would not be swayed and told me they looked the same on a CT and started me on a regimen of antibiotics to treat pneumonia. They told me they were admitting me and instead of sending me, a stage IV breast cancer patient, to the cancer ward, they admitted me to the pulmonology floor.

I got to my room at 10 PM Friday night. Saturday morning the hospitalist came by to see me and again I asked about the pneumonitis. He said he would defer to the on-call oncologist and input from the pulmonologist.

It was late afternoon, about 3 PM before the oncologist came by. By this time I was exhausted and frustrated. I had several doses of IV antibiotics, but still no steroids to combat the true underlying cause of my issues.

It wasn’t until midnight Saturday I finally received a dose of steroids. Not because pulmonology came by and agreed, but because the on-call oncologist had to push the orders through. I received a second dose of steroids Sunday morning.

By Sunday at lunch, I was ready to go home. The steroids were making me feel much better and I was even up walking the halls, just waiting for the doctor to sign the papers for me to go home.

Let me say, the breathing issues were less frustrating than trying to get all of the doctors necessary to sign off on my release. They were determined to keep me another day, I was determined to get out of there as soon as possible. A hospital is no place to get rest, and rest was exactly what I needed.

OK, Rant over regarding the hospital.

Monday I was supposed to receive my 3rd Enhertu infusion. However, due to pneumonitis, that option is off the table now. I am still taking steroids to make sure my lungs are clear.

Scans will be scheduled soon before a new treatment is started. Right now I am just trying to wrap my head around all that has happened in the past two months since learning about the progression. Once the steroids have run their course, and we are sure the pneumonitis is cleared up, I will start a new treatment. Hopefully, one that is less harsh than the Enhertu.

I will keep you posted. But until then, I would be remiss if I didn’t thank all of the friends that have gone above and beyond to help me through these past 2 months, including watching my sweet dog Guin, rides to appointments, food deliveries, grocery pickups, a well-timed visit to lift my spirits, and prayers.

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