V

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.

Gamma Day

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.

The Insanity of Health Insurance

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.

Health Insurance Hassle

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.

Decisions

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!

You can’t always get what you want

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.

Scanxiety

Scanxiety is a term commonly used by metastatic breast cancer patients. It is the anxiety we experience when it is time for tests to evaluate the effectiveness of our treatment.

The first time I met my oncologist she told me that battling MBC is a marathon, not a sprint. For cancer in earlier stages, treatment is more harsh because the idea is to blast the cancer away to achieve remission. Since there is no cure for MBC, the goal of treatments is to control the cancer while keeping that patient strong enough to keep battling. In two days I will have a bone scan, chest/abdominal CT scan and a brain MRI. My last bone scan and chest/abdominal CT were in mid-November and they showed that my cancer was “extremely stable” according to my oncologist. For me that meant that all bones lesions showed signed of healing, the adrenal tumor was unchanged and the liver lesions had decreased in number and size.

I only had a few days to celebrate those results. Less than two weeks later I experienced extreme vertigo and passed out in the bathroom in the middle of the night. I bumped my head in the fall and ended up in the emergency room. Tests showed that the cancer had spread to my brain. I had gamma knife treatment on 3 brain tumors. It is now three months later and time for another round of scans. This Tuesday I will have a bone scan, brain MRI and chest/abdominal CT scan.

I have a bad case of scanxiety. My thoughts race. At times I wish I did not have to wait any longer for the tests because I want to know if the treatment is working. At times I wish I the scans were canceled because I am afraid they will have bad news. At times I think of how important it is to “know you enemy”. At times I am sure that my cancer is still extremely controlled. At times I am certain that they will find more brain tumors.

Telling me to “think positive” is not helpful. Prayers for good scans and peace of mind are helpful, as is inappropriate humor.

Health Insurance Hassle

Learning that I had breast cancer that had already spread to my bones, liver and adrenal gland was overwhelming. Of course I was devastated, but immediately realized that I had to figure out what to do next. My primary care provider (PCP) suggested a large research hospital. My first thought was Mayo, but it is not a network provider for my health insurance. My PCP is a graduate of Washington University and suggested Barnes Jewish Hospital/Washington University in St. Louis, which is about 3.5 hours from my house. Barnes is not a network provider for my health insurance, but is considered tertiary – meaning my insurance might approve them if it is necessary to seek treatment beyond what in-network hospitals can provide. My PCP set up an appointment with a breast cancer oncologist and my battle with health insurance began.

My insurance company assigned me a nurse care coordinator named Heather. You know how Mr. Rogers said to look for the helpers? Heather is definitely one of those. She monitors my symptoms and side effects and helps me navigate the health care system. As a former oncology nurse, she understands the medications and treatments and tests. I have learned so much about health insurance from her including some tricks to work with the claims department.

I learned that my insurance had approved my treatment at Barnes as I was driving down there for my first appointment. (I took a leap of faith and scheduled the first available appointment and hoped things would work out.) Since my diagnosis was de novo (stage 4 from the start), my type of breast cancer is very aggressive, and I had extensive metastasis (spread), my insurance agrees that I need to be treated at a larger hospital than anything closer to me. This means that they allow my treatment there to be considered in-network (covered at a higher rate with a lower deductible), even though Barnes is technically an out-of-network provider.

You would think, then, that I wouldn’t have any further problems with that decision, but I do. Frequently claims are processed as out-of-network. That is when the battle begins to get it changed to in-network. I always try to work with customer service myself first and then get help from Heather if that doesn’t work. Sometimes she can get it corrected herself. Other times we involve my PCP’s office for assistance. Sometimes I have to call my oncology nurse coordinator at Wash U for some help. I log into the online portal for my health insurance every day to monitor my claims. I have time scheduled in my google calendar twice a week to make calls about any problems.

I have become an expert at health insurance terms and understanding all the details of my policy. Next Tuesday is a huge day for me in St. Louis. I will have: brain MRI, bone scan, abdomen/chest CT scan, neurology appointment, radiology appointment. I spent time on the phone yesterday to verify that all procedures had been authorized as in-network. They had not, so I made calls to get that corrected and was able to verify that the correct authorization was in place late this afternoon. I also had to make sure the neurologist and radiologist I will see had been referred by my PCP. I was able to verify that earlier this week. When the claims are filed, I will monitor their progress in the online portal to make sure they keep their in-network status. I have a large binder that I use to track all this, with very detailed notes for each phone call.

Is it worth the hassle? Absolutely! I have complete confidence in my oncology team at Barnes/Wash U. By being vigilant in tracking my claims, I am able to ensue that I only spend the annual out-of-pocket maximum. That is a 5-figure number and a scary amount to pay annually, but one-fourth of what I would pay if any of the claims are considered out-of-network. Thanks to the Affordable Care Act, my policy has an out of pocket annual maximum and no lifetime limitation. Each treatment I receive has a claim cost around $40,000, not to mention the cost of the scans. I am grateful for the health insurance I have and I remind myself of that when I am weary from working full-time with stage 4 cancer. It is absurd that health insurance is tied to employment in our country. It is absurd that anyone with terminal cancer who qualifies for social security disability has to keep working in order to keep health insurance. I should be on disability and focusing on my health and spending time with my family, not working full time to keep myself alive and my family financially stable. I believe that working full time is lessening my survival time. But I also believe that not having quality health insurance and the money to pay for care at a fantastic research hospital would also lessen my survival time. It sure seems like we should be doing this in a better way in our country.

Unbecoming

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.

XXVIII

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…