Today is treatment 91. Dave and I are at Siteman Cancer Center South County. It is quiet here today. My appointment is late so most people are gone for the day. We had a rainy drive down and expect a rainy drive home.

I finished “Chatter: The Voice in Our Head, Why it Matters and How to Harness It” by Ethan Kross. I highly recommend it. Kross discusses when the voice in our head is helpful and when it is not, and how to distinguish between the two. He delves into the impact of social media on the inner voice. Journaling is one of the tools Kross recommends to turn yourself to the narrative of your story, which helps step back from the negative into finding a constructive path forward.

I leave you with a smile. This is what toilet paper looks like when you live in a house with Madi, our 2 year-old lab. Her hobby is stealing it when we aren’t looking so she can chew on it. We rescue the remains.

What the Affordable Care Act (which the President-Elect has promised to repeal immediately in January) does for me and my immediate family:

1. It covers children until the age of 26. I have 2 of those.
2. It eliminated lifetime maximum coverage amounts on all health insurance policies. It takes millions of dollars to keep me alive. When lifetime limits are allowed again, I will hit that in a matter of months, have to stop treatment and enter hospice care until my death.
3. It eliminates pre-existing conditions. This is not a problem unless my spouse changes jobs. Then his new employer’s insurance company can deny cancer coverage for me.

Why LGBTQ rights matter to me:

Trump has called for rolling back societal emphasis on diversity and for legal protections for LGBTQ citizens. Trump has called for ending diversity, equity and inclusion programs in government institutions, using federal funding as leverage. I have very close family members, friends, and former students who are braced for impact. God created all of us. All humans matter.

Why it matters to me that our President-Elect is a convicted felon and misogynist who bragged about “grabbing them by the pussy:”

1990 summer internship with a grain elevator audit firm. My supervisor and I wrapped up paperwork at his house after returning from being on site. As I was leaving, he picked me up off my feet and tried to carry me to his bedroom. I was 21 and naive. I needed his recommendation for my resume. I actually talked my way out of that situation – but then had to show up at his house the next day to drive to another elevator. I finished the internship. I had to.

1996 working for a family-owned firm. In a performance review, I was told that I was doing “pretty good” but they wouldn’t know for sure about me until they saw how I handle my “reproductive window.” I asked for clarification and was told that it looked like I was in “prime child-bearing years” and if I was going to have babies and take time off, it would not be good for me getting promotions.

2014 interviewing for a position with the entire board of directors of a company, I was asked if I had explained to my husband that the job required a lot of evening and weekend hours and I would be going alone to visit farmers in their homes.

2015 I took over a territory for a male accountant. About ten percent of the existing farmer clients refused to work with a woman so they were assigned to someone else. One farmer yelled into the phone, “There is no way I will every work with a god-damn woman.” I had farmer customers at my next job, too, and received similar treatment. Funny, I do not remember that there was a pink CPA exam for women and a blue one for men. I guess I should be thankful that I passed the CPA exam without having a penis.

My opinion of many friends, acquaintances and family members has changed since the election. But then, I guess they already really did not care for me anyway. So now we are even and both in the know.

On Sunday, October 13 I delivered the message at Bethany Park Christian Church in Rantoul. I’ve been thinking about it a lot lately and want to share it with some new thoughts added. Note: I am not a trained pastor, just a disciple who tries hard. These thoughts are my own.

Our scripture reading is from Job 23: 1-9, 16-17. Job is in great physical pain from the boils that cover him from head to foot. He is still hurting from the deaths of his family and losing all his money. He is irritated by his friends. Job is a bitter man. He is trying to make sense of his life. Why is God punishing him? Why is all this happening? 

New International Version

Job

23 Then Job replied:

² “Even today my complaint is bitter;
    his hand^[a] is heavy in spite of^[b] my groaning.
³ If only I knew where to find him;
    if only I could go to his dwelling!
⁴ I would state my case before him
    and fill my mouth with arguments.
⁵ I would find out what he would answer me,
    and consider what he would say to me.
⁶ Would he vigorously oppose me?
    No, he would not press charges against me.
⁷ There the upright can establish their innocence before him,
    and there I would be delivered forever from my judge.

⁸ “But if I go to the east, he is not there;
    if I go to the west, I do not find him.
⁹ When he is at work in the north, I do not see him;
    when he turns to the south, I catch no glimpse of him.

¹⁶ God has made my heart faint;
    the Almighty has terrified me.
¹⁷ Yet I am not silenced by the darkness,
    by the thick darkness that covers my face.

A little over 5 years ago, Dave and I sat in a doctor’s office and heard the words, “There is no easy way to say this.”

Breast cancer that had already spread to my bones (spine and sternum), adrenal gland, and innumerable messes on my liver. Metastatic breast cancer. Stage IV breast cancer. It is incurable and I was given a 20% chance of surviving 5 years.

5 years was July 24 of this year. 

I had annual mammograms beginning at age 40 and they were all negative for cancer. Nine months before I learned I had metastatic breast cancer I had a negative mammogram. What happened?

I learned that I have dense breast tissue. On a mammogram, dense breast tissue appears white and cancer appears white. Mammograms miss over 50% of cancerous tumors in women with dense breast tissue. Women with dense breast tissue need supplemental screening – ultrasounds and a breast MRI. 

Starting Jan 1, 2019, mammogram reports in Illinois are required to list your breast density. My last mammogram was October 2018. That law was too late for me. 

If you are a woman or know a woman – this is what you need to know.

1. Get an annual mammogram beginning at age 40, or earlier if you are in a high risk category. 
2. Look at the actual radiology report. You will need to access your medical chart online for this. Do not rely on the verbal report from your doctor’s office. This applies to any testing you receive. You need to be your own advocate and look at the reports and ask questions until you understand them. 
3. If you have dense breast tissue, tell your doctor to order an ultrasound or MRI. 
4. Perform monthly breast self-exams. I would not be here today if I had not found my own tumor. 

For context, after I found my lump, a diagnostic mammogram found a vague density in my right breast. An ultrasound showed a 2.4 centimeter tumor. A breast MRI showed 2 tumors, both over 3 centimeters and connected to each other with tentacles. Get the right testing!

• One in eight women will be diagnosed with breast cancer. How many women do you know? Divide that number by 8. That is how many women you know who will likely get breast cancer. 
• Men can also get breast cancer.
• Every year 685,000 people in the world die from metastatic breast cancer. 
• In the United States, over 43,000 people die of metastatic breast cancer every year. That is 117 people each and every day. 

We are in the midst of a sea of pink and pink ribbons in the month of October. When you consider how to help, know that less than 5% of all the US breast cancer research dollars goes to researching metastatic breast cancer – the only kind of breast cancer that kills. I am part of Light Up MBC. The money we raise goes to Metavivor, the only organization in the United States that exclusively funds MBC research. Yesterday I participated in the Be a Hero Fun Run in Chicago, which also raised money for Metavivor. 

Today, Sunday, October 13, is National Metastatic Breast Cancer Day. State Farm Center on the University of Illinois campus will be lit up green, teal and pink this evening  – the colors of the metastatic breast cancer ribbon. It is one of over 200 landmarks around the country that will be lit in our colors tonight as part of a Light Up MBC campaign to raise awareness for metastatic breast cancer and to raise research dollars.

This evening you can tune in for a live virtual evening of inspiring MBC stories at illuminated landmarks, special celebrity guests and musical performances – all to raise money for metastatic breast cancer research. It will stream on social media and the internet. Dave and I will be standing in front of State Farm Center this evening as I tell my story for the event. 

Also as part of the live event, there is an auction. I have teamed up with Jenny Simpson of Creekside Nursery in Dallas, North Carolina and Power Planter of Loda to offer a Signature Creekside Nursery Event. You can bid on it during the live event. 

I have a blog if you would like to get updates on my journey. 

Mostly, though, I want to try to make sure no one else gets their breast cancer diagnosis too late to be cured. Early stage breast cancer (0,1,2,3) can be cured. Metastatic (Stage IV) breast cancer has no cure. All I can do is continue to treat the cancer to keep it under control. I receive scans every 3 months to see if any new tumors have popped up. In November 2020 the cancer also spread to my brain. This May I had surgery to remove my 12th brain tumor. Last Wednesday I received my 89th chemo treatment – I get them every 3 weeks and will until I die. In the last 5 years, in addition to the 89 chemo treatments, I have had 3 rounds of gamma knife on brain tumors, radiation to the adrenal gland and my left shoulder, 9 heart MRIs and 7 echocardiograms (because one of my chemo drugs is known to cause heart damage), 18 brain MRIs, 14 whole body bone scans, 19 chest/ab/pelvic CT scans. Yes! I am fortunate to have survived 5 years so far, but it certainly isn’t easy. 

I think back to Job. Job could not understand why all the bad things were happening to him. He wanted to find God so he could go to God and plead his case. He wanted to hear God’s side – to understand the mind of God. Surely God wouldn’t oppose him if he could plead his case in person. Why me, God? I wonder if Job – and me – and you – should, instead,  be asking, Why NOT me”? Why do I have Stage IV cancer? Why shouldn’t I have Stage IV cancer? Neither one of those questions has a satisfying answer. God absolutely did not decide that I would be diagnosed with a terminal illness anymore than God decided someone else’s tumors found that day would be non-cancerous.  I don’t think we humans are supposed to understand the mind of God. Faith doesn’t have to do with intellect (thank goodness) or even feelings. God is found in the heart of a child. Faith is a deep knowing that is woven inside all of us. Faith is that instinct to silently plead, “God, help me,” in our darkest moments. 

Despite Job’s moanings and criticism and doubt, he was still seeking God. God knows where to find us. And God is with us in the highest highs and the darkest lows. 

I don’t know why I am still here. I decided early on that I only wanted to die once – and if I focus on dying or when I will die, that means I am giving death more than one day. I will keep striving to LIVE each day I am here, to love my family hard, and to thank God for my wonderful life. 

Added thoughts afterwards:

It is my strong belief that my God is not somewhere playing with humanity like chess pieces. God is with us and for us, no matter our religion (or no religion), socio-economic status, ethnicity, sexual orientation, gender or mother tongue, or political party. God did not cause the Holocaust or 9-11 Tragedy anymore than God decided that I should have stage IV cancer. God is not going to choose the outcome of today’s national election, either.

There is one thing that I know will be true in the face of the coming unknown: No matter what happens, our boat will sail on and our faith will keep us afloat.
– Rev. Kaeley McEvoy, “A Prayer for Calm Amid an Anxious Election Season”

At first glance you will notice the gorgeous pumpkins on my porch – raised by the Niewold Family. But look behind.

Yes. That’s my washer and dryer on my deck. My brand-new-this-year, we-remodeled-the-whole-house-this-year washer and dryer. I’ve had some or all of my major appliances on my deck for all or part of 8 months now.

In the midst of all the business of Breast Cancer Awareness Month, I discovered that the new washer had been slowly leaking since being installed. Slowly leaking for a few months. Ugh. The laundry room has, once again, been gutted. It’s been left to dry and TODAY my incredible, awesome, marvelous contractor, Fernando Payan, is putting in new tile, new baseboards, painting, and putting my washer (fixed) and dryer back in place. Fernando got here to check out the mess before the appliance technicians even came.

We’ve done a couple essential loads at my mom’s house but let me tell you, I’ll be doing laundry 24/7 starting tonight to get caught up.

My guy – Fernando – can be reached here:

217-714-8168 or payan214@hotmail.com

We do not have an attached garage so I park close to the house when I bring groceries home, unload them, and then put the car in the garage. In my world, this means that when I go back out to put the car away, I take one of the dogs for a short drive around Elliott (pop. 300) with the windows partially rolled down. Doesn’t matter the weather or temps or time of day.

It’s a quiet day here on the farm except for the blustery winds outside. The chemo side effects continue to be especially bothersome. The Hand Foot Syndrome (HFS) was improving but now seems stalled. I was supposed to start back on Capecitabine today but my oncologist wants me to wait until the HFS symptoms are tolerable before I do. She assured me today (via My Chart message) that it will get better. I have to trust her; look where she has gotten me this far. I still cannot play the piano with my hands swollen and cracked and walking is a chore with my toes so red and swollen. I’ve been throwing everything I can at the HFS but it really comes down to time and patience.

In the past few months I have developed some other troubling side effects, a bit personal in nature. I found a medical professional about 30 minutes from home who promises she can take care of these things, too. It will take time and patience.

There are other troubles in my life that have nothing to do with cancer. They are out of my control, so I need to learn radical acceptance. That will take time and patience.

I sense a theme.

So today I am in my Llama Lounge (former office) listening to Christmas music. I do that on bad days. I think through music. I am calmed through music. I pray through music. I heal through music. And my 2 labs.

Labs and music, and time and patience. Bring it on.

Today is treatment 90. I had an echocardiogram this morning. I receive them regularly because one of my infusion drugs, Herceptin, is know to cause heart damage.

There was a significant gap in scheduling between the scan and going to the cancer center so we opted to wait in the car with the windows rolled down. It’s truly a gorgeous day here in St Louis.

I am experiencing a “new acronym” now – HSF. Cleveland Clinic describes it this way: “Hand-foot syndrome (HFS), or palmar-plantar erythrodysesthesia, is a common side effect of some types of  chemotherapy. Chemotherapy is a common cancer  treatment. HFS is a skin reaction that you may experience as redness or swelling on the palms of your hands or the soles of your feet.”

Looking back, this has been coming on for a few weeks, but it made its presence known with a bang on Monday of this week. The palms of my hands and the soles of my feet (along with the toes) are bright red as if they have been burned, and they feel like they have been burned, too. My fingers are swollen, especially the pads. If anything merely brushes by my toes, I am in excruciating pain. Daily living activities have been extremely difficult the last few days. I am wearing thick socks and slathering my feet and toes with unscented moisturizer. Every step down is bad.

My oncologist told me to take a week off the capecitabine. When I start again, it will be at a lower dosage. She already lowered it due to the awful digestive issues so now we are stepping down another notch. It has to happen because I cannot function will the HFS this bad. Hopefully it will lessen enough for me to get used to this new normal.

I am tired of new normals.

I’m also scared of lowering the dosage so much that my breast cancer will form another brain tumor.

I am tired of brain tumors.

I am tired of metastatic breast cancer.