BuiltaLife

Offering hope to those on the path behind me

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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.

Cancer isn’t trying to Teach me Something

This is not the post I intended to write this morning. I had every intention of updating you all with the fact that I did receive my 2nd infusion and I did receive the kyphoplasty procedure on Thursday.

The infusion was easy, compared to the first one, and I’m still learning the side effects. The kyphoplasty has relieved the bone pain from the broken vertebrae, however, I am discovering just how much atrophy I have experienced in the past 3 weeks.

I intended to tell you a funny story of how one of the nurses at the infusion asked if my two friends were my daughters (umm, no they are the same age as me). I told her I knew the last 3 weeks had taken a toll on me, but I didn’t think it had been that much of a toll. The sweet nurse was very embarrassed after she realized what she said and apologized profusely and often while we were there.

But this morning, before I picked up the computer to share how I am coming through the other side of my own personal March Madness, I saw a post on Instagram.

The post really irritated me.

If you’ve known me for any amount of time, you know that this coming October will be twenty years since I have been dealing with cancer. Thirteen years since it has been metastatic.

That is a long time to deal with cancer.

Let me tell you, Cancer is not a gift.

And being called strong, resilient, or an inspiration does nothing to make me feel better about the cards I’ve been dealt. In fact, it feels like another burden that I carry.

Cancer is not something to brag about having lived with for that many years. It is a grueling, ugly disease that is exhausting to deal with on a daily basis.

So when I saw this on Instagram this morning, my mood suddenly soured.

When you replace “Why is this happening to Me?’ with “What is this trying to teach me?” Everything shifts.

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I will be honest, I almost yelled when I saw the post.

Again, if you know me, I try to keep an upbeat outlook on things in my life. But not everything is a lesson that I need to learn.

  • Sometimes bad things happen.
  • Sometimes cancer spreads.
  • Sometimes you just want to crawl into a hole and cry because it hurts.
  • Sometimes you just wish you weren’t having to face this on your own after losing the love of your life.
  • Sometimes friends recognize when you are overwhelmed.
  • And sometimes those friends may freeze in response because they are accustomed to seeing you upbeat even in the face of adversity.

So please pardon me if I don’t look at my current situation and ask “What is this trying to teach me?”

I’m pretty sure I’ve already earned a Ph.D. in cancer.

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?

Everyone

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.

me

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.

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!

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