I wouldn’t trade my life for anyone else’s.

Really.

My gran said that if you throw your problems in a ring with a bunch of other people, you would choose your problems back rather than picking up new ones. I never truly understood that until this morning. As I sit here with stage 4 cancer and having to work full time to keep insurance and financial stability, I am overwhelmed by all the blessings in my life. So many blessings that I could not list them all. But here are a few.

I have the most incredible spouse who shows me his commitment to our wedding vows every day. Through sickness and health. For rich or for poor. He tells me often he wishes he could be the one with cancer so I could be the one to get all the rest of the years with our kids. That is love.

I have three amazing, unique, interesting, determined kids. They like to think they have nothing in common but I see the same independent streak in each of them that assures me they will be just fine. They are the center of my universe and I love sitting back and watching them tackle life. My fierce love for them keeps me going on the worst days.

My mom is a tiny octogenarian who is mighty in her ability to love me and take care of me. She listens to me vent and celebrates the good days with me. She is a woman of valor and I hope to make her proud always.

I have a job that is well suited for working from home and I work for a company that is sticking with my and supporting me. I’m sure my boss and the board of directors did not imagine me shifting to working from home when I was hired 4 years ago. Nothing like that happens “in these parts.” My boss knows how much the coop means to me since it was my dad’s. He knows I give my all and he trusts that I will provide the financial directions they need, even if it is not from the office at the elevator.

I have a lot of wonderful friends. Three of them are key to my life. Malinda, Kathy, and Sara have known me for decades and love me, warts and all. They hear all my good days and bad days. They know the fear and hurts that I discuss with no one else. I know I can just let it all out with them. They seem to know when I need a good laugh and when I need a good hug (even if it is a long distance one).

I have my music as a way to keep me sane and communicate with God. Sitting at the piano is my favorite spot. Rattling the walls of a church with the pipe organ comes a close second.

I live on a farm where I can have space and peace and quiet. I can sit on my porch and listen to the birds and figure out life.

I have a dog who is my nurse and best buddy. She is there at 2 am when I’m scared of dying. She worships me and loves me unconditionally.

I could go on, and sometime I WILL continue this post. But for now, I am going to enjoy this feeling of blessedness and be thankful for my life. How could I ask for any more than what I already have?

Today has been a very physically painful and mentally frustrating day so I came to the garden to have a conversation with my Savior.

I was only going to play for a bit.

That was over three hours ago

I started playing the organ when I was twelve. I’ve spent a lot of hours practicing in dark, empty churches. When I was young the creaks and groans of these buildings scared me so my dad would come along and sleep in a pew while I practiced. A few decades later I have come to love the solitude of an empty church.

God and I had a lot of things to discuss today. Cancer is hard. Parenting teens is hard. Parenting teens when you have cancer is daunting. We want our kids to learn from us to spare them from making mistakes we have made ourselves. We want them to trust us and take our advice. When they don’t and seem determined to make mistakes, it is time for me to go to the garden and be reminded that I am not in control. Cancer is not going to allow me time to sit back and watch all this “learning by experience” turn out okay in the end.

God is with me. Always. God is with my kids. Always. I rest in the peace of handing them over to God’s care and I trust that He will see them through all their days. I want so badly to be with them for more of their days.

The sure sign of a difficult day is that I am wide awake in the middle of the night. It was a long work day that included an evening trip to the office. Any day spent mostly sitting leaves me in a great deal of pain. My job is probably typical with several really great people but a few that try to make everyone around them as miserable as they are.

Learning More About MBC

I listened to a brief webinar about MBC while I worked. I prefer to know more about my enemy, but this is the first one I’ve attended since discovering brain mets. Did you know that in a 1 cubic cm tumor there are about 1,000,000,000 cancer cells? That’s one billion! I was diagnosed de novo (stage 4 from the start) with a large spider-like tumor in My breast and innumerable tumors on my liver and a large tumor on my adrenal gland and many bone tumors. Imagine how many billion cancer cells were floating around my body. Yikes.

This webinar discussed several exciting treatments for my type of breast cancer, HER2+. But then the presenter mentioned the blood brain barrier. The human body is amazing and the blood brain barrier is an invisible divider between the brain and rest of the body. This barrier serves to protect the brain from disease and toxins. That is a good thing. This also means that most drugs do not cross the blood brain barrier. That is a bad thing for cancer patients. The same drugs that are controlling my cancer so well below the neck are doing nothing to my brain. HER2+ spreads to the brain 50 percent of the time. Very little progress has been made in the last 20 years in treating HER2+ that has spread to the brain. Lucky me. There are a couple trials out there that are promising and gamma knife has been successful for me.

This evening I participated in Zoom MBC Grief support group. I am so grateful for the MBC advocates out there working to organize these groups. Because I still work full time, it is difficult for me to find the time I need for these groups, but I try to fit them in a couple times a month. The mere act of conversing with other women with MBC helps me not feel so alone in this journey. I have a supportive inner circle, but these women truly know how I feel. The topic was regrets. It was a great discussion, but also stirred up some feelings that aren’t settling down to allow me to sleep.

Regret

Two years ago today I set a personal record at the Illinois 5K. This photo perfectly captured my emotions at the finish line. Joy! I had no idea that I had cancer growing inside me at that moment. Because I didn’t know that dense breast tissue requires more than a mammogram to find cancer, because the radiologist wasn’t required to tell me that, because I was told my previous mammogram showed no cancer, I could feel complete and utter joy. I won’t ever feel that sense of joy again on earth.

Tell my Story

I cannot go back and change what had happened but I can tell my story and urge women to know their breast density. If you are category 3 or 4, demand a follow up ultrasound or MRI. If you don’t know your density, look up your last mammogram report. If it doesn’t tell you, call and make them tell you your density category. Then, if you are category 3 or 4, make an appointment today with your primary care provider to discuss the next steps. I cannot change my story, but I can change yours.

I stood outside tonight on the farm and noticed a gorgeous full moon. I thought of all the women from my webinars who were under this same moon. I thought of the people I love being under the same moon as me. I sang to the moon:

I see the moon and the moon sees me. The moon sees somebody I want to see. God bless the moon and God bless me. God bless the somebody I want to see.

I really think that the Lord above created you for me to love and picked you out from all the rest to be the somebody I love best.

When I get to heaven and you’re not there, I’ll write your name on the golden chair. I’ll write it big so the angels can see, just how much you mean to me.

I’m at Siteman South County receiving treatment #30. Time flies when you’re killing cancer.

The Tin Man

I’m still pretty tired from my gamma knife procedure last Thursday and get a little dizzy occasionally. Monday I had another fall at home. This time I was in my carpeted bedroom, which helped. What didn’t help was my right hip landing on top of a large plastic dog toy shaped like a bolt. It made a very large, interestingly-shaped bruise and scratch with a variety of colors. I’m still pretty sore but getting better everyday. One of the side effects of my targeted therapy is what I call the “tin man” effect. I often feel like the tin man from the Wizard of Oz, before he was oiled by Dorothy. When the Tin Man becomes dizzy and starts to teeter, she tends to topple to the ground!

Learning to Love

Sunday I played the pipe organ for two church services. It was so therapeutic to get back to that right after the gamma knife. The sermon text was from 1 John 3:1. “What marvelous love the Father has extended to us! Just look at it—we’re called children of God! That’s who we really are. But that’s also why the world doesn’t recognize us or take us seriously, because it has no idea who he is or what he’s up to.” Pr Lehman reminded me that we need to love more and love without all the conditions. I love my 3 kids infinitely more than anything else. It is hard for me to think of God loving me like that – but God does.

My maternal grandmother (Gran) was my greatest example of that kind of love. She loved you no matter what. She paid no attention to how someone looked or acted. I never once heard her say negative things about anyone and she always came to the defense of others. There was a time in my life when I thought she was not strong. I thought she allowed people to treat her like a door mat. I have learned that she was actually a pillar of strength. She was secure enough in her faith to see all others as fellow children of God. I am trying to learn to love like that – without conditions. I have a long, long way to go.

This weird thing I do with my brain

I’ve had a few days to adjust to the news that I had 5 new brain tumors last week instead of 1. When I receive not-so-good cancer news I have learned to give myself about a week to compartmentalize that news into part of my brain. I cannot forget about it, but I can place it in a specific part of my brain that I try to only access at certain times. Usually that is late at night when Dave is at work and I’m hanging out with Indie. Sometimes that is when I’m taking a walk outside with Indie. Often this is when I’m playing the piano, a time when I feel closest to God. I’m not happy that there were 5 new brain tumors, but I am confident the gamma knife took care of them. I intend to only die ONE day, which means I need to focus on LIVING the other days. I am blessed with a support team to help me do this. My husband, my 3 kids, and my mom take good care of me. I have 3 close friends who check in on me almost daily. This is the day the Lord has made. Let us rejoice and be glad in it.

My 3/16 brain MRI revealed 1 new tumor. Today’s scan surprised us with 4 more for a total of five. My gamma knife treatment lasted about 95 minutes with part of that with my head tilted back to get a direct shot at one of them. My headache was pretty severe after they took the frame off, but I’m happy to be on the way home. My next brain MRI is in August.

It’s 3:23 am and we are on the way to St Louis. I will have another brain MRI and gamma knife treatment today, 4/15. This comes after the treatment was initially denied by my health insurance yesterday. Yes. Denied. Health Alliance sat on the prior authorization for exactly one week before denying it one day before it was scheduled. Yesterday was not a good day. It is the first day they actually made me cry about insurance since the fall of 2019 when they denied the first-choice systemic treatment my oncologist ordered.

I’m a CPA (Certified Public Accountant) and my Bachelors degree was in economics. I am the Controller of a grain cooperative. So I understand why health insurance companies make it hard for people like me to get treatment. Metastatic breast cancer in incurable. My health insurance company will spend a great deal of money on me until I die. The quicker they can make that happen, the less their expenses.

On a happier note, by the end of this week, all of my immediate family will have received the second dose of Modena. We are all celebrating that. I spent the weekend with my friend, Sara, who is also fully vaccinated. We enjoyed the Missouri Botanical Gardens, a little antiquing, and a lot of laughter. Yesterday was one of the most emotionally challenging days I’ve had in months. I’m weary, battered and broken by what life has thrown my way, to the point I don’t know what to ask of God. These are the kind of days I just cry, “God, help us.” Then I let God be God.

I am being treated at a top-notch research facility. After my recent scans, my case was presented to the Tumor Board at Barnes/Wash U to determine the next course of treatment. This team of amazing physicians decided to continue the same systemic treatment and use gamma knife on my new brain tumor.

Before any services can be provided, a prior authorization request must be submitted by the medical provider and approved by my health insurance. Barnes/Wash U delayed in submitting my prior auths, but they got them in last week. Guess what?!?

Now the Medical Director of my health insurance company is reviewing my case to determine if they will approve it or not. Yes, that is what I typed. An executive at a health insurance company is now reviewing my case to see if they agree with the treatment determined by the Tumor Board at Barnes/Wash U.

THIS IS PURE INSANITY.

So Barnes just called me to say they are canceling the brain MRI for tomorrow because they don’t want to do it until they know for sure I will have the gamma knife treatment on Thursday. IF the pencil-pusher at my health insurance company decides that the Tumor Board at Barnes/Wash U knows what they are doing (?!?!?!?) and approves the gamma knife before Thursday, I will have the brain MRI in the morning, then wait for the gamma knife procedure to be programmed and set up by my neurologist and radiologist, and then have the gamma knife late in the same day.

So I need big prayers that the Medical Director at Health Alliance will approve what my medical team at Barnes/Wash U wants to do by the end of the day tomorrow.

I have another brain MRI scheduled for April 13 and gamma knife to obliterate my new brain tumor on April 15. Today I called to make sure all the prior authorizations were in place and in-network. Big problem. Barnes has not filed prior auths for those 2 procedures and we are past the window of time to get them filed and approved. So I need to reschedule —- but how can I be sure that Barnes will submit the authorizations for those appointments in time? Meanwhile I have a brain tumor laughing at me, untouched. I have spent over an hour making calls, which mostly means leaving messages with all the people I know who might be able to help. I’m frustrated. I’m tired. I’m scared. I’m doing everything I can to fight cancer but the clusterfuck of health care billing and health insurance seems to be on the side of cancer instead of me.

The Wash U Tumor Board met Monday evening and my case was presented. Their recommendation is to continue the same systemic treatment (Herceptin and Perjeta) and use gamma knife to zap the new brain tumor into oblivion (my wording, not theirs). The systemic treatment is handling everything below the neck extremely well as I have been stable for 9 months now. These drugs do not cross the blood brain barrier so we will continue brain MRIs every three months to monitor.

There is a lot to coordinate in scheduling this since my neurologist and my radiologist both have to be present for the procedure. I probably will not hear when it is scheduled until next week. I am relieved to know the decision has been made. Onward and upward!

Do you have a shower routine? Mine is likely a bit different than most but I’ve been doing it for years. When that glorious hot water hits my head I remember the words of my baptism. Often I say them aloud: I baptize you in the name of the Father, and of the Son, and of the Holy Spirit. I picture the water cleansing me from sin, from worries, from yesterday. Then I say the Lord’s Prayer, focusing on, “Give us this day our daily bread.” That line has a very special meaning to me.

My dad battled severe mental illness in his later years, along with Parkinson’s disease. It was a nasty combination. Our visits were not always pleasant. No matter what, though, we ended our visit by joining hands and saying the Lord’s Prayer together. I always reminded him, “Daily bread, Dad. We have all that we need.” I wanted him to find peace from his terrible anxiety to know that we really did have all we needed and could stop worrying about the what-ifs. Not long after my diagnosis, during my shower routine, that prayer line struck me hard. I almost had to sit down. Daily bread, Heidi. You have all that you need.

The results from my scans on Tuesday were not what I wanted. Everything from my neck down is extremely stable. That is definitely worth celebrating! Everything from the neck up, however, is not. The 3 tumors they blasted with gamma knife are the same or smaller, so they are dead. The fourth lesion we opted to not treat is unchanged, so that was the correct decision. Unfortunately there is a new tumor in a different part of my brain. My case is being presented to the interdisciplinary team at Barnes/Wash U on Monday to decide how to proceed. There are three great options; we just need to decide which one to employ. The new tumor has not grown large enough to cause symptoms yet, so that is good. (Passing out when I turn my head to the right was not fun; glad those tumors are dead.)

The news knocked the wind out of my sails a few days. My inner circle and I needed some time to process it. For me, that means gaining the ability to partition those results to a part of my brain that doesn’t command constant focus. This morning, in the shower, I realized once again that I have been given my daily bread. I’ve been given all I need, even though it certainly wasn’t what I wanted. I have an amazing medical team who will knock this new tumor into oblivion. I have an amazing inner circle who want only the best for me and love me more than I ever imagined possible. If you need me, I’ll be repeating the Lord’s Prayer and looping the Rolling Stones on my phone. Today is a glorious day.