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.

In the two years leading up to my diagnosis with metastatic breast cancer I had been undergoing a major transition. On the physical side I had joined a weight loss program and was in the process of losing 90 pounds. I took up walking and then jogging. On the emotional side I had started seeing a therapist who helped me handle several issues, the foremost was the idea that I am not in control – and that my need to control situations was a result of anxiety. I was not allowing those in my life to fail or succeed on their own. On the faith side I had a real awakening about my relationship with God and was learning to let God be God; I had to stop trying to control my life and take time to breathe and allow God to help me. All of that was hard work but worth it because I liked the person I was becoming.

But wait…

Was I really becoming a new person? Losing weight did not make me a new person; it gave me the confidence to show myself to outsiders and stop hiding things inside. Therapy certainly did not make me a new person; the goal was to figure out my thoughts and emotions and allow the real me to comfortably exist in the world. My reawakened faith did not make me a new person; accepting that God was in control and actively working in my life gave me a life preserver that let me stop worrying (okay, at least some of it) and focus on the good. The journey I was on helped me recharge some relationships. I learned to make time for the activities I enjoy because those things were important to me.

Since July 2019 I’ve been on a different journey – my cancer journey. My first blog post talked about how much cancer has changed me.

But wait…

Today I have been wondering if I have that all wrong. To be fair, cancer is definitely changing the physical side of me. It is also easy to say that cancer is changing me inside, too. But maybe, just maybe, this journey is also helping me discard all the the things that aren’t me. I wonder if instead of becoming a different person, this journey is helping me to lay aside all the things that are not me so I can focus on the real me that has always been here.

I have always tried to be the best mom I can be for my kids. Cancer has limited my ability to be the kind of mom I think I should be, and also given me the shove to be the kind of mom I think I should be. To be sure, I have physical limitations now. But I also have no problems taking time off work or turning off my work notifications on my phone at the end of a work day. I don’t think about doing something fun with my kids; I actually make the plans. I don’t think about having important conversations with them; I have the conversations.

My cancer journey is making me determine who I really am and what I want out of life – and fast. It is forcing me to unbecome all the parts of my life that are not the real me. Playing the piano is central to who I am and how I talk to God, so I don’t think about playing when I get “everything else” done; I make time to play almost every day. Spending time with my husband, kids and mom has always been important, but now I grasp that time is not an infinite resource. One has to do the important things today and every day because the “some days” might not happen. My cancer journey is helping me give up the “shoulds.” I don’t do many things anymore simply because “I should.”

I think I am on a journey of unbecoming all the unimportant parts of me so that what is left is who I really am and who I have been from the start. Don’t wait for a cancer diagnosis —— start unbecoming today.

Today is my 28th treatment. I receive Herceptin and Perjeta every three weeks via infusion. These drugs are specifically designed to target tumors that produce more HER2 protein. Every twelve weeks I receive an infusion of Zometa to target my bone mets. (Mets = metastasis = where my breast cancer has spread in other parts of my body)

I receive my treatment from Barnes Hospital/Washington University, in St Louis. It is a 3 hour 45 min drive from home. It might seem odd, but I absolutely love treatment days. It is a day of actively treating the cancer, while the other days I am left to wonder if it is working. In 19 months of coming to Barnes, every single staff member had been extremely considerate and competent.

I adore my oncologist. She never rushes through my appointments and personally calls me with information rather than delegating that to her nurse coordinator. Since this is a research hospital I have a team of doctors who are reviewing my chart and recommending treatment. I am confident that they are doing the best they can for me. And that is good for my mental and physical health!

Today I am Chemo Pod 2. There are five pods here. One of the pods is reserved for people in clinical trials. That is because the nurses have to be specially trained in administering the medication for the trials. I am participating in 3 clinical trials at the moment, but none involves medication. Here at Siteman South County we have tons of windows. There are 2 nurses assigned to my pod, with several others who float around. Until Covid, my husband could sit with me during treatment. Now he waits in the car and we text frequently.

I hope you enjoyed the “tour” today. I think it’s time for a nap…

Now that I am vaccinated I have started venturing out in the world a little. I went grocery shopping for the first time in over a year. I had my teeth cleaned. (My poor hygienist had to use a chisel and pick axe to get them clean!) I practiced the organ in an empty church. I met my childhood friends for dinner in our favorite restaurant, where we sat in a heated outdoor patio. I had not seen them since October. I even took my college-age son shopping for odds and ends. I hope I never take these things for granted again.

I followed a Twitter thread today that discussed anticipatory grief. It refers to a feeling of grief before an impending loss, but not necessarily death. One can experience anticipatory grief before a scheduled move or job change or major life event. The particular Twitter thread today discussed the anticipatory grief that people with metastatic breast cancer (MBC) experience.

I grieve the life I won’t experience.

My husband and I often talked about what we would do in retirement. We were high school sweethearts and have been together for 34 years. I always pictured us growing old together, enjoying life on the farm and traveling wherever our kids live for visits. I immensely enjoy watching my kids grow into adulthood. You work so hard to raise them so you can see the kind of people they are as adults – independent thinkers. You want to see them making choices that are solely theirs – that you put enough “good stuff” in them to sustain them through their life.

I grieve the life I had before cancer.

Sometimes it is hard for me to remember how I felt about things before cancer. What did I worry about? What kept me awake at night? My cancer was already at Stage 4 when I was diagnosed, so we don’t know exactly when it started. When I look at photos from several months before my diagnosis my mind starts to play a horrible game called, “Where was the cancer at this point? Was it already in my liver? When did it reach my bones? Was my adrenal gland already covered in a huge tumor?” I miss living a basically pain-free life now that I battle pain every single day. I don’t miss my hair but I sure do miss my eyelashes! (Those things come in very handy, beside looking nice coated in my favorite mascara.)

I work very hard to keep my focus on living rather than on dying. But that anticipatory grief creeps in when I least expect it. Listening to people talk about retirement plans or when they will retire will do it. Seeing parents talk about their kids getting married will do it. My solution at the moment to handle anticipatory grief is to face it head on. I certainly don’t want my friends and family to avoid discussing certain topics around me. That’s not living! So when I feel the sadness creep up, I throw it up to God silently while staying in the conversation or situation. I also try very hard to instantly think of things I can do, today, to make up for the thing I think I will miss. I am enjoying spending much more time with my family and friends. I am trying to put much more of me into life, versus sitting back and waiting for things to happen.

Someone today told me they think I have such a positive attitude and they cannot believe I laugh so much. My grandma said, “You can laugh or you can cry. Laughing is much more fun.” I try to follow her advice. When people ask, “How are you?” The first thing that usually pops up is, “I’m fine except for the terminal cancer.” There is a lot of truth to that.