I taught math and was a math interventionist for several years when my children were in elementary and middle school. I often told my students to get their pencils moving by circling and underlining parts of the problem as a way to combat story problem anxiety. I even had some especially anxious fifth graders draw boxes to rewrite data points, just to get the pencil moving. I find that when you are facing a problem and don’t know what to do, you just need to take one step in any direction.
This morning I turned to bread baking, a favorite pastime. I have a double batch rising in a huge bowl on the fireplace mantle and I feel much better. Nothing is solved and the problems are still there, but I’ve got my pencil moving.
The crew installed a new mail box and post today. It is amazing how small updates make a big impression. I’m only sharing this to start on a good note.
United Health Care has denied approval for my procedure. We have exhausted all appeals except a very last-straw urgent appeal that even my once-confident neurologist says doesn’t stand a chance. United Health Care is the one insurance company who has held firm to the belief they know more about the field of neurology and brain tumors than the director of the Brain Tumor Center at Barnes/Wash U, who happens to be my neurologist.
Laser interstitial thermal therapy, or LiTT, is a minimally invasive procedure that uses heat to destroy areas of abnormal cells, such as tumors or cells causing seizures. Laser interstitial thermal therapy is sometimes called laser ablation surgery, stereotactic laser ablation or MRI-guided laser ablation. It is not new. It is not experimental. Health insurance companies are notoriously behind in updating their polices and guidelines as the field of medicine advances. United Healthcare is one of the slowest. Therefore, any procedure that is, at first, experimental and, after a time, becomes wildly performed, needs the “experimental” tag removed. United Health Care still considers LiTT experimental even though it is not anymore. Many people in my MBC Brain Mets support groups have had the procedure. None of them have United Health Care insurance.
United Health Care CEO, Andrew Witty, is the fifth highest compensated health insurance executive.
Andrew Witty, UnitedHealth Group
Total compensation: $20,865,106 CEO pay ratio: 331:1
Andrew Witty heads the largest health insurance company in the US and has earned almost $20.9 million while doing so. His 2022 pay is a substantial increase from $18.4 million in the previous year.
Witty received $1.5 million in annual salary and around $2.7 million in non-equity incentives. He also earned almost $12.4 million in stock incentives and $4.1 million in option awards. Here’s a breakdown of Witty’s total compensation.
Witty was named CEO of UnitedHealth Group in February 2021. He previously served as the group’s director and as chief executive of its tech arm, Optum.
UnitedHealth Group boasts a strong network of over 1.5 million medical and healthcare specialists and 6,200 hospitals. These professionals provide medical and dental benefits to the insurer’s more than 49 million members across the US.
I do not know what the next step is right now. I suppose my case will go back to the Barnes/Wash U Tumor Board to decide the next best way to treat the growing mass in my brain. Andrew Witty will celebrate his 60th birthday on August 22 this year. The chances of me celebrating my 60th birthday are slim.
My weekend away was incredible and the timing was great. I have some exciting news from the weekend about advocating for My Density Matters. More on that in an upcoming blog.
Tuesday (yesterday) I had a pre-op appointment, blood and urine tests, a stealth head CT and a brain MRI with contrast. Insurance still has not approved the surgery but hopefully they will change their minds soon. I start my pre-op routine and meds Sunday so the clock is ticking.
Dave and I are making returns to several home improvement stores this morning. Dave asked me if I wanted coffee on the way. Ha! Lots of work was done while I was gone for the weekend and the tests yesterday. I am thoroughly enjoying this project because I’m excited to see it done and because I have a wonderful contractor. His most often used reply to me is, “Yes. I can make that happen.” 😎
The quirks of an old house are still popping up. They had to access some plumbing from the ceiling of the piano room. Whatever. Also I keep adding to the project!
I added some new ink this weekend. This is the metastatic breast cancer ribbon incorporated into HOPE. Hope has gotten me through some tough times.
The remodeling crew arrived at 7:30 am. To say I am not a morning person is a huge understatement, but I am playing nice to move the project along. Part of the day was spent replacing the water shut-off valve in the basement. Old house fun! Since it was 2 days after treatment and the water was shut off for several hours (and a farm house with well water), I finished and filed all the tax returns I do for family members to distract me from not having a working toilet. Fun.
Speaking of old, old house, here is another “little” budget addition we found today.
I did ask them early enough to pretty please scoot the vanity over a few inches.
My neurologist’s office told me today they can “usually” convince my health insurance company to approve the brain surgery. They are confident enough that they want me to go ahead with my scans on the same day as the peer-to-peer meeting. I like their confidence.
Indie Madi
The remodeling project is also exhausting for the dogs. It is also, apparently, frustrating since a stuffed bunny died while I was taking a shower tonight. RIP
1. Wake up super early to be ready for the arrival of the construction crew.
2. Go to make coffee and discover the coffee maker is broken.
3. Text all coffee-loving friends about my tragedy.
4. Meet with crew to discuss changes to the plans due to its-a-really-really-old-house-so-lots-of-surprises.
5. Drive 35 miles to shop for different bathroom fixtures needed due to changes. See previous item for reason. (Bonus: lots of coffee shops in this city)
6. Get back home and realize I forgot something. Thank goodness for online ordering and my utterly amazing contractor who is willing to pick everything up and make all the returns.
7. Started feeling light-headed mid-afternoon and realized that ingesting something besides coffee would be helpful. (It was.)
8. Cleaned floors thanks to demo crew (some) and dogs (mostly).
9. Role play as an etymologist to identify a photo of a bug sent to me. Feel slightly scientific.
10. Receive call from my neurologist office that health insurance has approved all the pre-op scans to map the brain surgery, but not the brain surgery. My neurologist has a peer-to-peer meeting next week to plead my case to the pencil-pushers.
11. Rant and rave about my opinion of health insurance to anyone within ear shot. Have a good cry. Ask God if it is a sin to wish them all dead, since that is what they wish for me. ( I know, God. I’m still just ranting a little here.)
12. Learn that shower walls ordered on 3/28 and due to arrive 4/10 (yep – today) won’t ship until 4/25 due to “unusually high sales volume.” This means my bathroom will not be done before my surgery, if there even is a surgery. See previous 2 items for my snarkiness. Looks like I will be sharing a bathroom with the guys a bit longer than expected.
13. Evening telephone chat with my contractor about a few more questions and a reminder that they will arrive at 7:30 am tomorrow.
14, Set alarm on my phone to remember to text Dave my coffee order so he can get it on the way home from the overnight shift.
15. Madi inspects the day’s work. All electrical lines run today and light/heat/exhaust installed. Also some behind- the-scenes plumbing done. Refer again to item #4. She found a roll of electrical tape left behind. Fun! She also found a pile of lumber outside and showed me how quickly she could relocate that pile when I left her outside too long. My contractor does not have a Madi. He will learn what that means on this job.
I ended up driving myself to treatment 81 today. Driving TO is never the issue; I just do not enjoy driving FROM. It is a gorgeous day and I was happy to be driving in the opposite direction of the remaining eclipse traffic. Construction season is upon us and I learned the hard way the areas to avoid. Hopefully the drive home will be a bit quicker.
Since I left home my contractor has demoed the upstairs bathroom. No turning back now!
On March 25 I had a partially calcified cyst removed from between 2 lower spine joints. I’ve experienced many medical procedures now, but this one was not pleasant. The cyst was removed and sent to pathology along with a bone biopsy from those 2 vertebrae. I was told it would take some time before I would know it was success. I can definitely say it has lessened my back pain to an extraordinary extent AND everything was benign (non-cancerous). The cyst will grow back but we don’t know how fast. I hope it takes a long time.
In April I will make several trips to St Louis for medical appointments. On Tuesday, April 9 I will have Treatment #81. The following Tuesday, April 16, will be a long day of pre-op testing which includes another brain MRI. My brain surgery is scheduled for Friday, April 26. I have treatment #82 on Tuesday. April 30. Cancer is relentless but I’m keeping my head above water.
Problems within my family continue to cause more stress than cancer. There is no waiting for the other shoe to drop – those suckers are falling like rain. ☔️
I’m working to put some living in each day, although I miss a few here and there, My youngest and I have had some great Saturdays exploring farmers markets and vintage clothing events. I had dinner with two of my besties this week. I’ve scheduled weekly massages (along with infrared sauna wraps) weekly with my friend, Lindsay. A remodeling project on our 155-year-old farmhouse begins tomorrow and I am so exited to see the finished product. I’m meeting another bestie for a long overdue girls weekend in a few days and we will laugh so hard so much that it will hurt – goals!
I guess there really is a rainbow hanging over my head.
The Lord himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged. Deuteronomy 31:8
The hits keep coming and it shouldn’t surprise me given that I have Metastatic Breast Cancer, yet they still do. I have been through difficult times in my life. I am going through difficulties now and I am heading at an accelerated rate toward more difficult times. It is heavy; in between all the joy and love and laughter and fun it is really, really heavy. The emotional highs and lows I experience every day are utterly exhausting. At night, as I am reflecting on a particularly good day, I will suddenly break down, sobbing , wishing this cancer would disappear.
Dave and I will make quite a few trips to Barnes in April. We were there so much in March. I was hoping for a respite. I will have treatments 81 and 82 during April. I will spend another day meeting with anesthesia, getting pre-surgical lab work and getting a head CT and another brain MRI so my neurologist can map out the surgery. My surgery is scheduled for April 26, pending insurance approval and I will spend at least one day in the hospital. Recovery will take several weeks.
My parents were part of The Silent Generation. They were children during The Great Depression and World War II. They also both had at least one grandparent who was an immigrant. The Silent Generation worked hard and kept quiet; there was never any discussion of feelings. Children were to be seen but not heard. Emotions were something to be avoided at all costs. A positive mindset was highly valued. My house growing up was filled with books and newsletters about The Power of Positive Thinking. There is nothing wrong with that unless you are using that as an excuse to avoid dealing with emotions, and many people I loved refused to think or speak about emotions. I believe that is a ticking time bomb.
I tend to withdraw from the world when the waves are crashing around me. I spent years thinking this was a weakness of mine – that I could not handle life as well as I should. Only in the past year have I learned to give myself grace. A recent post on www.tinybuddha.com reads:
Animals in the wild instinctively seek out quiet and safe places to rest when they are wounded and hurt. They stay there until they regain their strength, without feeling guilty or trying to push through the pain. Humans can learn a lot from nature’s wisdom by prioritizing rest, unapologetically, whenever they’re hurt, injured or unwell.
A poem by LE Bowman reads:
Sometimes we need the protection
The armor. The walls.
Not all fortresses are prisons.
Some are cocoons.
I will be spending much time this spring resting and healing here on the farm. I strive to live each and every day I am afforded. I find refuge knowing that God goes behind, with, and before me. I am not alone and neither are you. Whatever your difficulties are – God is walking your journey right along with you, just as God is doing for me. God does not need you to think positively. That is the beauty of God’s wild and crazy love for us, without stipulations.
When the Tumor Board at Barnes/Wash U, consisting of all their very best oncologists and neurologists, review my entire medical history and all my scans on large screens and determine I need brain surgery to remove the lesion in my brain, but pencil-pushers at my health insurance company, who do not know me or my history, are going to deny at first and make my health care providers jump through all the hoops to remove this thing that is steadily growing in my brain, I feel defeated.
I can choose the best medical team I can find and, still, my life expectancy depends on my health insurance company.
I hope they all watch someone they love die a slow, painful death, as they fight health insurance to their grave.
I’m writing this on the Amtrak train heading to Bloomington, IL. Dave and Madi will be waiting to take me the last 40 miles home via truck. (Madi and I both love truck rides.)
Scans ended up being fine but there was some initial concern and confusion due to how the radiologist wrote the summary. My oncologist made calls to make sure all was unchanged.
Next Monday (3/25) they will attempt to aspirate the cyst on my lower spine. There is a 50% chance it will work and I really really hope it does because if it doesn’t they have to remove it via surgery.
I have a telephone consult with my brain neurologist next Wednesday and brain surgery will be scheduled after that call. I had hoped to attend a metastatic breast cancer conference in April in Philadelphia but that will have to wait until next year. The Brain Tumor Nurse Navigator called me today with more information. I won’t be able to drive for a few weeks or lift anything over 10 pounds. She said I will be exhausted for 5-6 weeks and just want to be a couch potato. I hope I can take that opportunity to shorten my stack of books to be read.
I appreciate your prayers. Please include Dave and our three children.
I am not in control. 