Rest

  I’m self-reflecting while I sit on this plane for the second time in 48 hours. I’m not doing so good at resting lately. My brain has returned to thinking a million thoughts at once and just like that, I can forget the exact thing I was doing and move onto another thing without a blink.

 My goal is to be more intentional. I want to start one thing and see it through the finish before starting another. Seven things at once just doesn’t work anymore. 

 I’m really good at setting boundaries and saying no to others. I’m not so good at saying no to myself. So here’s to no not being a bad thing. She needs a break and she needs rest. The she is me. 

Back in Philly

  What a trip already! Slept soundly and recharged my battery. 

 Went to my monthly in-person check-up with the NP and discussed how everything was going. She’s very pleased at how well I’m tolerating the Verzenio but conversations were had related to my medication management of side effects which have allowed me to stay so good. 

 I’m leaving with another three months of Verzenio at the regular dose of 150 mg twice a day which I would say is a success. While I shouldn’t, any dose reduction feels like a failure to me. That’s part of my all or nothing thinking.

 I’m also leaving with the option to get labs every week rather than every other to trend certain labs that are not normally impacted by Verzenio, but that are borderline. These should be able to be managed with drinking more electrolytes and continuing to monitor my water intake.

 I was pleased that some of the concerns that I’ve had in the past with scheduling and other issues had been resolved by the team, which truly shows their focus on the patient experience. I left with my dates through late January which is my 6 month visit. I will be getting a bone marrow that visit as well, and we will know what Verzenio has done!

I was wrong about AFLA

  So… AFLA is for public sector/state employees only. The corporation I work for, Community Health Systems, is considered a private entity even though something said public but meant for trading as it is a for-profit corporation. This means, no job protection. 

 Enter leave of absence requests and ADA laws. 

 From my HR:

“I was unfortunately misinformed about AFLA, which I now know covers only public sector/state employees. I apologize for the misinformation I sent previously.  

If FMLA denies your medical leave, you will need to complete a leave of absence request.  

The Americans with Disabilities Act (ADA) has guidelines for employers that cover employees with various conditions, including Cancer.  It states that leave must be granted unless it causes the employer undue hardship.  

Undue Hardship: An employer must grant leave unless doing so causes a significant difficulty or expense for the business, which is known as an undue hardship”

Doing the Right Thing

 As I think through my participation in these clinical trials, I can't help but visualize (and share) the normal sequence of events for treatment and surveillance for 10 years, which is my specific case. I am non-BRCA positive, triple positive (HER2+/HR+), early stage (2), no lymph node involvement, no metastatic disease, and non-pathologic complete response after neoadjuvant chemotherapy and lumpectomy for removal of tumor. Add in the findings solely due to participation in the clinical trial that I have disseminated tumor cells knowing that this knowledge is not available to anyone not on a clinical trial testing for these. Change even ONE of these factors, and things can drastically change for ongoing surveillance and recurrence risk.

➕ = Decreased recurrence risk

➖ = Increased recurrence risk

Non-BRCA Positive ➕

Triple Positive ➖

Early Stage ➕

No Lymph Node Involvement ➕

No Metastatic Disease ➕

Non-Pathologic Complete Response ➖

Disseminated Tumor Cells Present ➖

I'll explain the ➖ as they have the most impact in my cancer coming back. The assumption in the recurrence rates is that the person is being treated with best known evidence based treatments and following their treatment protocol accurately. The exception to others in their known recurrence is the additional knowledge I have of present disseminated tumor cells.:

• Triple Positive Status
• Being HER2+ has a high 5 year recurrence rate of 10% to 30% with most recurrences occurring within the first 2-5 years
• Being HR+ has a high 5+ year recurrence rate as the risk does not drop to zero at 5 years. A steady, persistent annual risk of late recurrence continues for 10, 15, or 20+ years.
• Non-Pathologic Complete Response
• Recurrence risk within 3 years is 7.8% to 10.3%
• Disseminated Tumor Cells - would not have known this had I not done the clinical trial
• Roughly 3- to 4-fold higher risk of late distant recurrence compared to those who have cleared the cells from their bone marrow. For HR+ breast cancer, this risk does not peak early; instead, it remains a steady, constant threat that can stretch out 5, 10, or even 20 years post-diagnosis.

***I've been asked this and never knew, so here's the difference if my cancer would have been HER2-/HR+.

• HER2-/HR+ status, the risk of recurrence is spread out over a longer time, with a steady risk that can continue past 5 years. It carries the same steady, persistent annual risk of late recurrence with due to the positive HR+ status.

 I found this visual on current accepted treatment:

This is current monitoring for specifically Triple Positive Non-BRCA Breast Cancer for 10-year survivorship without any additional knowledge of disseminated tumor cells:

 I think I've belabored the fact that without participation in the PENN-SURMOUNT trial or one testing similar things, I would not have the knowledge that my risk is 3- to 4-fold, on top of my already increased risk due to cancer type and non-pathologic complete response.

 Imagine searching for images to make this post a little less dry, and you come across this:

 So you click on it, and then this comes up:

 Talk about releasing my held breath. This is my trial. I am doing this. I am not just "waiting and seeing". I am doing the right thing.

Job Protection - FMLA vs. StateFLA (AFLA)

First things first, cancer and job protection. 

In the United States, there are 2 laws that can help protect you:

• The Family and Medical Leave Act can help if you need to take time off work.
• Federal - the one we hear about most, known most commonly as FMLA (or fimlaa)
• State - we'll review Alaska which is known as AFLA, not to be confused with AFLAC
• The Americans with Disabilities Act protects against discrimination for certain health conditions.

 Cancer is considered a serious health condition. Having a diagnosis of cancer with a qualifying Medical Certification, which is called a Certification of Health Care Provider (CHCP) and filled out by your oncologist, protects your job by the Federal FMLA and State Federal Leave Act, if your state has one. Here is a link to an opinion letter from the U.S. Department of Labor’s Wage and Hour Division (WHD) outlining your same protection while undergoing a clinical trial: https://www.dol.gov/sites/dolgov/files/WHD/opinion-letters/FMLA/2024_11_08_01_A.pdf

Thanks in advance to Google AI:

"These two laws protect an individual undergoing cancer treatment through three core pillars: job security, benefits preservation, and scheduling flexibility.

1. Job Protection and Restoration

While you are out of work for treatments or recovery, your employer cannot terminate, demote, or penalize you for your absence.

• Equivalent Position
• When your leave concludes, you have a legal right to be restored to your original job or an equivalent position with the exact same pay, benefits, and structural terms of employment.
• Protection from Retaliation
• Employers are legally prohibited from tracking family medical leave absences against you for negative performance reviews or disciplinary actions.

2. Mandatory Health Insurance Continuity

If you receive group health insurance coverage through your workplace, your employer must maintain your healthcare coverage at the exact same level and under the same conditions as if you were actively working.

• You will still be responsible for paying your normal employee share of the insurance premium, but the company must continue paying its portion.

3. Flexible Leave Layouts (Continuous vs. Intermittent)

Cancer treatment rarely follows a straight line, so the laws allow you to structure your time off in the way that matches your medical needs:

• Continuous Leave: Used for a single, long block of uninterrupted time off, such as taking 4 weeks off to recover from an extensive oncology surgery.
• Intermittent Leave: Used in small, non-consecutive increments. You can take a few hours off for weekly chemotherapy, or sudden single days off when facing severe side effects like exhaustion or nausea.
• Reduced Schedule: Allows you to permanently scale back your regular workweek hours for a set duration (e.g., changing from a 40-hour workweek to a 20-hour workweek during a multi-month radiation cycle)."

One myth is that FMLA pays you for time off. It does not. PTO pays you. Sick leave (if your state requires this), pays you. But FMLA is the above: job security, benefits preservation, and scheduling flexibility, but not a way to get paid.

Now, let's pretend that FMLA is Batman and AFLA is Robin. This will make sense in a minute.

Federal FMLA (aka Batman)

• Coverage
• Applies to all public agencies (local, state, and federal employers), public and private elementary and secondary schools, and private-sector employers with 50 or more employees.
• Entitlement
• Eligible public employees receive up to 12 work weeks of unpaid, job-protected leave in a 12-month period for qualifying family, medical, or military reasons, or up to 26 workweeks for military caregiver leave.
• Guaranteed restoration to the same or an equivalent position
• Eligibility
• Employees must work for the public agency for at least 12 months
• Have worked 1,250 hours during the previous 12-month period (excludes PTO hours), and
• Be employed at a worksite with 50 or more employees within 75 miles.

FMLA is what I used in 2024 as I had been a full time employee prior to my cancer diagnosis and treatment banking more than 1,250 hours in that 12 hour period. Fast forward to now, I greatly reduced my hours to 20 and then 24 hours per week and am sitting at only 1001.5 hours within the past 12 months. Therefore, I do not qualify for FMLA. Initial panic set in.

Enter the sidekick - Robin

AFLA (aka Robin) - varies by state

• Coverage
•  Applies to state agencies, political subdivisions, and public authorities that employ 21 or more employees within a 50-mile radius for at least 20 consecutive workweeks.
• Entitlement
• Up to 18 weeks in a 24-month period (serious medical conditions)
• Up to 18 weeks in a 12-month period (pregnancy, childbirth, adoption)
• Eligibility
• Worked at least 35 hours/week for 6 consecutive months OR 17.5 hours/week for 12 consecutive months 🥳🎉

Now this I qualify for. And it can be taken intermittently rather than all in one chunk, just like FMLA.

Enter the 1-2 punch. If you do qualify for FMLA and your state has a family leave act, they are to run concurrently. This means, in 2024, I qualified for 12 weeks of FMLA and 18 weeks of AFLA but the first 12 weeks of AFLA ran at the same time as FMLA. AFLA did give me an extra 6 weeks past the concurrent 12 weeks.

***Here is a link to find out if your state has a family leave act: 

    Just kidding. There is no easy link. This is why I'm doing this post. AI can be a great way to search for your state's act. The "prompt" or "search" I put into google.com is "state family medical leave unpaid table" and it asked "If you want information for a specific state, please let me know which one so I can give you the exact local duration and rules." to which I was able to put in another state and it summarized the benefits. Your HR should be a resource as well.

From what I can gather, your HR process for applying for FMLA should automatically apply you for your state family leave act to see if you qualify for one or both. Hopefully this is a smooth process should you need it.

***I will clearly state that state family leave act information is not easy to obtain. It also isn't talked about often. You hear about FMLA and that is it. Don't forget to check if you have additional protection for your job via your state laws.

Join the club if:

Breast Cancer Season

We’re coming into breast cancer season starting today! You’ll see all sort of collabs to raise money for the cure.

https://www.komen.org/shopforthecure/ - If you don’t ask me how much I spent, I won’t tell you! 🤭 

 This one is truly sweet:

https://susiecakes.com/breast-cancer-awareness/

FROM OCTOBER 1, 2026 TO OCTOBER 31, 2026, SUSIECAKES WILL DONATE $1 FROM EACH KOMEN CUPCAKE AND $5 FROM EACH KOMEN CAKE SOLD TO SUSAN G. KOMEN® WITH A MINIMUM DONATION OF $10,000.

So is this one in its own way! It’s allowing us to have an affordable car rental when we travel home in November and December. 

https://www.komen.org/shopforthecure/avis/

Goliath

  I’ve played the scenario in my head again and again. Everyone tells you how strong or how resilient you are, but do you really have a choice?

 I had been told this, again and again, and each time I smile and thank them. Until one day, I finally said, “I appreciate that, but do I really have a choice?” It sounded rude. It sounded crass. I watched as everyone looked at me like “did you just say that?” Then I started to back pedal, merely to make others feel more comfortable. I explained to this person, who is not  part of my inner circle but had been present when I announced that they had found the disseminated tumor cell, that I wasn’t being rude and that truly people put in this position don’t have a choice to be strong or resilient, they just have to be, if they’re going to live.

 So maybe I just undisgruntled my situation. Maybe they’re not commenting on my ability to overcome cancer, but rather my choice to be pleasant and positive and kind despite what I’m going through because of cancer. Maybe I’ve had it wrong this whole time. Oh the power of journaling.

Another Perspective but one just the same

  I came across this article on another Breast Cancer fighter’s experience with Verzenio: https://christaavampato.medium.com/how-i-endured-2-years-taking-verzenio-9cf32820dc92

 It is well worth the 2 minute read. It’s helpful to have something that is relatable.

My joint pain is worse. More sharp and a higher pain level. Especially when using them at end ranges (all the way bent or all the way straight). They say this is due to my letrozole (aromatase inhibitor/estrogen blocker) but I feel Verzenio is adding an additional twist of the knife in there. It does say Verzenio may cause “mild joint pain may occur” so if you’re already at a 6 consistently, and add mild pain level, that’s a 1-3 point increase so 7-9/10 sounds about right. 

Sleeping was my super power, and I was proud of that. Why is everything I was proud of being taken from me or challenged? Insomnia is real. I had it here and there with my TCHP due to my steroids but overall, have kept my sleep habits. Now I’m up at 11-12 am until about 3 am and then around 7ish. I hope to get this under control as sleep is such a keystone habit that impacts so many other areas of your life. 

Depression yet joy

The tension between depression and joy is one of the most complex human experiences, often described as a psychological dichotomy. While typically viewed as polar opposites, human psychology and creative expression show that depression and joy frequently coexist rather than exclude one another. 

Lack of appetite

Anyone who knows me knows that I’ve never had this problem. I love food. The taste of it. How it works in your body. Now, if I even touch food it’s likely to get something in my stomach so I can take my medications. I suppose having 52 different pills is in itself a meal, so maybe I’m not that far off from 3 meals a day. 🤣

I told myself, you better row. 

What if something good happens?

 

 

The stars have aligned

  The stars have aligned. They’re a bit janky, but I’ll take it. 

 I was able to find another resource for lodging and this one is nationwide. Extended Stay America is partnered with the American Cancer Society to provide free or discounted rooms to those traveling more than 40 miles away from home for cancer treatment. And. They. Accept. Pets. 

 

 Enter the newest additions to the Miller household. My goal is for them to travel with me providing much needed doggo support while I travel monthly. 

Meet Stella (left) and Gus (right)

 They are in addition to our already amazing, Cooper Duper! They’re seriously stealing my heart. 

Realizing I never gave him a debut, here you go. 

🌈🌉 IYKYK

Handsome fella. He is 1 year 3 months. Our main man. 

 Ok squirrel. Verzenio has been doing a number on my attention span. Back to my janky stars. 

 Here’s another link for the American Cancer Society resources. Apparently there’s an app. Onto that next, if I remember. 

 I haven’t been posting about the series of unfortunate events that I have been enduring. But that’s part of why I feel some janky stars have aligned. 

 I have been one of 9 Community Health Systems (CHS) employees to experience a “glitch” where my benefits have not been deducted from my paychecks since 6/28/26 pay period. Add that up. CHS employs approximately 90,000 employees. That means I’m the lucky 0.01%. I’ve been spending much of my time on the phone between this, a reimbursement TRICARE issue, and ongoing VA claims. Now I’m not saying all of this for boo-hoo pity party, I’m saying at all because of people ask me how I have to work so hard even while I’m having not the best go of life. I don’t know. Let’s just call it Stephanie’s Series of Unfortunate Events. 

 Anyway, those stars. ⭐⭒🌟

 I received a call from the only person who apparently knows what’s going on but does not have access to the ticket system we use to report a payroll issue. 

Summary:

• I will not lose my benefits. 
• I do not have to pay the thousands of dollars post-tax on an invoice from a direct pay request just because my benefits haven’t been coming out of my paycheck. The total will be “suppressed”. 
• I will have to pay back benefits pre-tax on my future paychecks. 

 I didn’t get to call TRICARE today which is probably good. I’ll stop while I’m ahead. I haven’t been ahead in a while. 

I’ll leave you with my beautiful, sparkly, janky stars