Tag: breast-cancer

Here We Go Again

It has been about a month since my last post, almost 2 months since my scan, and by this point I’m sure you are assuming one of three things: life threw me another cancer-related curveball and the spots were not cancer, my treatment plan is now: wait and let it fester…really give this cancer a chance to live to its full potential, or I’m finally fulfilling my dream of moving to a beach in Mexico…apparently without internet. Well, none of those three is the case. It just takes a while to make appointments, order tests, get results, and then make new appointments.  I was able to get the suspicious spot on my liver successfully biopsied and it is confirmed to be breast cancer that has maintained its original characteristics of being estrogen receptor positive (meaning estrogen is one of the things that helps this cancer grow) and HER2 negative.  Estrogen receptor positive cancer is generally considered less aggressive and many anti-estrogen treatments are available to fight the cancer on the hormone front. 

As I mentioned previously, the cancerous cells from my biopsy were submitted for genetic sequencing and while I was definitely excited and on board with this plan, I have mixed emotions about the results. First of all, it took about 3 weeks for us to receive the results, so it definitely delayed getting a new treatment started. Second, it turns out I have the same genetic mutations I did the last time my cells were sequenced in 2018. This leads me to wonder what the actual chances were that the genetic makeup (at least the genes that are identifiable at this point in time) would have changed and thus, was this test (and biopsy) even warranted? My evidence-based health professional brain says the chances were likely high enough to warrant the testing, but my singular patient, emotionally charged and frustrated-by-delays brain questions this. I will say the nifty feature of the genetic sequencing was that all of the FDA approved treatments and clinical trials for my specific treatment history, biomarkers, and mutations were listed in the results. This enabled me to compare what I had researched and the possibilities that my oncologist had mentioned with a meta analysis of treatments and evidence curated for the genetic fingerprint of my cancer.

The identifiable mutation my cancer cells continue to express is PIK3CA. I asked my oncologist what percentage of breast cancer patients expressed this mutation and he indicated that it was definitely over 50% initially, but many lose this mutation as the cancer progresses. He felt it was a good sign that I still carried this mutation. This mutation also means that I am eligible for many treatments. The plan is to start a new targeted therapy called capivasertib. Similar to the drug I have been taking for the past 6 years, palbociclib, this drug targets growth factors specific to breast cancer. Capivasertib targets something called serine/threonine kinase (AKT), a critical component in the signaling pathway that helps the cancer grow. Because my cancer is still fueled by estrogen, I will also change up my estrogen-blocking attack. I will take a drug called fulvestrant. We will evaluate how well this regimen is working with another scan in 3-4 months. We are hopeful that the tumor growth will stop at the very least, but hopefully even shrink.   

I feel well at this point. Changing medications is never without obstacles and I would not be surprised if I stumbled a little bit healthwise just adjusting. When I started my current medication, palbociclib 6 years ago, my immune system took quite a hit. For the first couple of years I would routinely have to take an extra week break from the medication because my white cell counts (and specifically my absolute neutrophil count, the cells most important to fighting infection) dropped too low. I also got a pretty intense respiratory infection and then the rib infection all within a couple years of starting the palbociclib. Things improved after time and it seemed my immune system developed some type of resistance to the medication as my white counts have been close to normal for the past 3-4 years. My hypothesis is that as my immune system was becoming resistant, so was the cancer. Probably a valid statement, but it makes me wonder if there is a legitimate link. Trademark that: testing whether white blood cell counts can be used as a surrogate marker for palbociclib effectiveness. You heard it here first. Anyhoo….long story short, I’m guessing my immune system and overall energy level will take a hit with a new regimen. 

I have been able to continue jogging, for the most part, and I’m hoping to complete the last 5 states of my race in all 50 states goal in 2025. I can’t predict how much longer I’ll be able to run and while I would still consider walking a race a success, it would be more enjoyable and feel like more of an accomplishment to be able to run (or slowly jog) them.  

More to come in 2025 as new treatments and hopefully adventures begin.

October 2024 Scan Results

I’m sad to report that my recent PET scan showed new metastases to my vertebrae and liver. Whereas in previous PET scan reports, the first sentence was “No evidence of new disease”, this report had five bullet points right off the bat. My layperson’s summation of the PET report is as follows: a light sprinkling of areas of concern…maybe or maybe not cancer. With this annoyingly vague information I had a follow up MRI to clarify and that report indicated that yes, the areas of concern were most likely cancer. 

The next step will be a liver biopsy. This will serve a couple different purposes. First, it should confirm that this is what it appears to be, breast cancer that has metastasized to the liver. While a definitive biopsy is not really needed once the cancer has broken free of the original organ (they are not going to biopsy every single spot that starts to pop up over the progression of disease), it is comforting to me that they would biopsy this in light of the misdiagnosed rib infection fiasco of 2020. Second, we will be able to gather information about how the cancer cells might be changing and how to best alter treatment with next generation sequencing. This is basically a way to study the genetic makeup of the cancer cells that have most likely developed some sort of resistance (due to gene mutations) to my current treatment.

Because it will probably take around a month for all of this information to shake out and for me to develop a new plan with my oncologist, I’m choosing to share this information now, with the caveat that I don’t have a lot of answers yet. I can definitely report that the areas of concern seem to be small and I’m not in any extreme pain or discomfort that would warrant any emergency treatment. There are still many more treatment options available and I don’t foresee any dramatic changes treatment or prognosis-wise in the next few months, hopefully even years.  

I know what you’re thinking…what was all that 20 more years talk from my last post?!? I’m right there with you. That is cancer for you, it changes your life on a dime and can abruptly extinguish every single hope and dream you have for the future in a second. Will the hope come back? Yes, I firmly believe so, at least for a while. But it sure is difficult to keep moving forward in life with this information. In the words of Andy Dufresne in the Shawshank Redemption: “Get busy living, or get busy dying”. Those words contain so much weight when you are living with metastatic cancer. Everyday we wake up with a choice of how to live out the day in front of us. For most of us, certainly most days of my life, most days are spent trying to get by, surviving, “working for the weekend”, keeping our heads above water and minds out of the gutter. As we get closer to the finish line, as our days become numbered, each day and each moment becomes both more precious and more intense. I struggled during COVID because it seemed obvious that time was being wasted and we were never going to get those times back. Life is a delicate balance of living for the moment and planning for the future and adding cancer to the mix only intensifies that balance. It’s like life is the Indy 500 and you’re racing through all these laps of life, getting tune ups, crashing occasionally, going fast, then slow. A cancer diagnosis can feel like you just hit the accelerator, and not in a good way. It’s unnerving, scary, and anxiety provoking. For me personally, as someone who manages anxiety through planning and control, I needed to have some type of plan for the next progression and I managed that through quitting my job three years ago. As was probably evidenced in my last post, I was definitely questioning whether or not I had been a bit premature in that decision. While I guess I could arguably feel “vindicated” now that the cancer has spread, it’s not a great feeling. I feel like the two possible options in my job situation were an awkward feeling of thinking I should have stayed the course longer and the feeling I have now, which is the disappointment of losing one battle in my war on cancer.

On Tuesday I will have my fourth biopsy (sixth if you include biopsies that were part of surgeries). I feel like not only am I becoming a professional cancer patient, but I’m also on my way to setting records in numbers of biopsies. All things considered, though, I’m feeling well overall and we continue to aggressively monitor and treat this disease. I am by no means on my deathbed, we’ve just hit a bump in the road. My “race car” just needs a few small repairs. To drive home the point, when I told my boys about the progression, it didn’t seem to phase them too much. Sure, they might be hiding feelings and we are a fairly stoic family overall, but I think this also speaks towards how long and gradual this battle has been for me. I was originally diagnosed before Steele could even talk. In some ways they don’t know anything other than a parent with cancer and thankfully it has been much more of a quiet hum in our lives than a fantastical crash. All of this is fairly standard if not best case scenario for someone with my diagnosis. I will follow up in a few weeks, but I don’t expect much to change other than a few medications.

Job Search

It’s been a while. I have a PET scan (I usually have 1-2 every year) coming up and as usual when I’m coming up on another scan, things start to feel sore and make me wonder if anything will show up, but I’m guessing it’ll be another good scan. By some miracle I continue to be in remission on my original treatment. Taking a moment to honestly reflect on the past 6 ½ (really 9 ½ if you count my total cancer battle) years, I have mixed emotions. Happiness and gratitude are the dominant emotions of course, but if I’m fully authentic about this, there is also some frustration, anger, and mental exhaustion. With multiple good scans under my belt in the past 3 years and virtually no issues with medication side effects, I have graduated from active community volunteer to a full on job search that may or may not result in a total career change. As I was doing self reflection in preparation for this life change, I started writing. I typed out “Where is God in all of this?” about 3 months ago and what follows…months later…is blank space. I have yet to form any kind of thoughts on that question. Well, I have thoughts, just not coherent ones. None that I’m proud to document. I’m embarrassed to admit that I, this extremely lucky and blessed individual who seems to be beating the odds in the world of metastatic breast cancer, can’t bring myself to document how fortunate I am. I find myself experiencing a strange paradox of wanting to be authentic in my writing while also worrying that I’m coming across as a “complainer”. I bet I have at least seven passages written that I haven’t published for fear of how I’ll be judged by them (and also while many passages make sense in my head, I realize they read as total word and thought rambling with no organized direction…still feels good to write it out though). Speaking of unpublished posts, I wrote a “prequel” to the following excerpt about my job hunt so far. I may end up posting that later if I can clean it up, but in the meantime, here are some of my thoughts about my job hunt. 

Job Interviews

While this is probably becoming more commonplace, I can’t imagine many metastatic breast cancer fighters like myself find themselves in a position of looking for a new job after intentionally leaving the workforce due to the breast cancer diagnosis and complications. Aside from the basic luxury of being able to leave on my terms, I’ve enjoyed a very specialized, niche career in nuclear pharmacy. This was both a blessing and a curse. I knew in the decision to leave that I would likely be unable to re-enter the field of nuclear pharmacy due to its small size. What I didn’t fully realize at the time was that I would probably still want to find a job that is intellectually challenging. For the past three years I have dabbled in many volunteer opportunities. I’ve tried my hand at tutoring in math and reading. I’ve organized a food pantry and prepared and served community meals. I’ve coached Girls on the Run and organized a fun run at an elementary school. I’ve volunteered in concession stands and running events. While I appreciated the opportunities to volunteer in activities that match my interests, I miss metrics and goals. I miss the high of working towards something and, in participating in all of these volunteer tracks, I realized that working as a barista at a coffee shop might not be the best fit for me. At the same time I know nuclear pharmacy would be hard to get into and any other type of pharmacy would be a lift for me to get back into after a 12 year absence. I have no qualms about leaving pharmacy altogether and trying a new career. The issue with this is that anything similar would probably require some additional classes or education. I’m not sure it would make sense for me to invest in additional education at this point in my life. It’s hard to know for sure how I would feel in the absence of a cancer diagnosis. But it just doesn’t make sense to invest time and money into additional education under the cloud of a breast cancer diagnosis. All of these things have made re-entering the job force a real soul searching event for me. 

As overwhelmed and frustrated as I feel by these decisions and thoughts, I know the only thing to do is to keep moving forward. As wayward and lost as I feel in this job searching phase of life that I never thought I would be entering 6 years ago, I keep putting one foot in front of the other, keeping my eye out for jobs that might be a good fit, keeping my resume readily available, and learning new skills that might prove useful someday. That being said, I’ve applied to a few places, had a few interviews, and have a few stories from the road in the world of attempting new professional beginnings with metastatic breast cancer. 

To divulge or not to divulge

Privacy rules and HIPAA policies in medicine exist for very important and meaningful reasons. No one should be discriminated against for medical conditions. This thought has been fairly mainstream for decades now and on the surface is really not a highly debated statement. There is certainly gray space that I think challenges us to really think about what medical discrimination means. For example, in the world of nuclear medicine (nuclear anything really), pregnancy is treated very carefully for obvious reasons. No one wants to zap a cute little fetus with a bunch of deforming or potentially lethal radioactive energy. That being said, the question of how to best protect a fetus while respecting the rights of the mother and taking care to avoid workplace discrimination due to gender and medical condition needed to be answered. About 50 years ago, laws went into place that stated a pregnant woman actually needed to declare pregnancy in order to monitor radioactive exposure to her fetus in the workplace. Thus, even if it seemed obvious that a woman was about to give birth, her workplace could not mandate any types of extra exposure monitoring or protections unless she had declared the pregnancy. Side note: in the nuclear world we don’t ask “Are you pregnant?”, we look at a woman’s belly and if she’s wearing a fetal dosimeter (a tool used to measure radioactive exposure), we say, “Oh, have you declared?!?” 

I feel like my situation is similar. It’s a little murky, right? I mean, does anyone want to hire someone with terminal cancer? I feel that it is clear that no one should be required to divulge a medical condition to their employer or future employer (unless it’s a direct contraindication to the actual job) and of course I completely feel that I have a good pulse on my health and I would never apply for a job knowing that I may not be able to work or fulfill my responsibilities. On the other hand, I’m obviously extremely open with my diagnosis as evidenced by this blog. Side note: I just did a Google search of my name and I am reminded that Katie Ward is an extremely common name (and unfortunately there seems to be a connection with a murder in West-Central Wisconsin), so I guess a future employer might not make the cancer connection right away, but point is they could if they wanted to.

I never really know what to say in a job interview. My resume has a growing gap in it and I know it looks suspect, at best. I feel like it’s probably a red flag that I haven’t been employed since 2021, but is cancer a bigger red flag? Surprisingly (given all my cancer grievances I share online) I usually don’t talk about the cancer, so it also seems awkward and uncomfortable to mention it to anyone I don’t know well. For the most part I’ve avoided mentioning cancer in my job interviews thus far. Five years ago I applied for a job in oncology and I did mention the diagnosis in my interview screening questions. My diagnosis was the main reason I had applied for the job and I guess I felt divulging that would be the most authentic answer for whichever question I was given that triggered that answer. The other “interview” (more like a screening call than an actual interview) in which I spoke about this was for a job at a Pharmacy Benefits Manager (yes, of the evil PBM notoriety that is frequently blamed for high drug costs). When I scheduled this interview, I was asked to watch a short You Tube clip of a cancer patient in a very similar situation to my own (cancer had metastasized to his bones also and he was currently cancer free on an oral treatment). In the video, the patient and his wife proclaimed that this PBM had helped him get his $2000/month life saving cancer medication for $50/month. I guess I’ll never know if those stories are typical with this PBM because I didn’t get the job, but I suspect they are not. Regardless, I was truly inspired by his story and felt my job search was validated and reinvigorated when I heard him say he was back working again. In my enthusiasm I divulged to the interviewer that I was in a similar situation and excited to announce that I also was on the upswing due to modern medicine and ready to work again.  

During another recent interview, I experienced an unusual situation where I’m pretty sure one person on the interview panel (a fellow nuclear pharmacist in my community) knew about the cancer and there’s a possibility that others on the panel might have known. The facility I was applying at is actually part of the PET center where I get my scans. For all I know, the nuclear medicine doctor that interviewed me might read my upcoming scan, how weird would that be? Regardless, the interview was a fairly awkward video interview and there didn’t seem to be a good segue into my reason for not working since 2021, so I omitted discussing my health issues. Interestingly at one point I was asked what my career goals are. I was stumped by this question. I just kind of sat there for a few seconds, speechless. After berating myself for the bad interview and then some further self reflection, I realized I could probably give myself a little grace for not being able to articulate career goals. I have stage 4 breast cancer after all. My “career” quickly went from barely keeping my head above water balancing full time work with two young boys to thinking I only had 5-10 years left to live. Of course I was speechless…I’m just developing a mindset that I might make it through this and actually be able to work for 20 more years. It’s a lot to process and ultimately I don’t know what will happen. There’s still a chance I could start a new job and then experience a recurrence. The one thing I know for sure with much more confidence than 6 years ago is that there is an ever expanding array of tools to help me fight the next progression when and if it comes. The hope and gratitude that this gives me gets me through the anger and frustration that accompanies the blank space behind the question “Where is God in all of this?”.