The brain MRI results were stable.

I spent a lot of time playing the piano today. It is my therapy and the best way I communicate with God. We had a lot to discuss today.

One of my most favorite hymns is On Eagle’s Wings by Michael Joncas. I thank my 4-H House friend, Bev, who asked me to sing it at her wedding. I recorded an arrangement of it by Lorie Line for my dad’s memorial service. The lyrics are based on Psalm 91.

On Eagle’s Wings

You who dwell in the shelter of the Lord,
Who abide in His shadow for life,
Say to the Lord, “My Refuge,
My Rock in Whom I trust.”

And He will raise you up on eagle’s wings,
Bear you on the breath of dawn,
Make you to shine like the sun,
And hold you in the palm of His Hand.

The snare of the fowler will never capture you,
And famine will bring you no fear;
Under His Wings your refuge,
His faithfulness your shield.

And He will raise you up on eagle’s wings,
Bear you on the breath of dawn,
Make you to shine like the sun,
And hold you in the palm of His Hand.

You need not fear the terror of the night,
Nor the arrow that flies by day,
Though thousands fall about you,
Near you it shall not come.

And He will raise you up on eagle’s wings,
Bear you on the breath of dawn,
Make you to shine like the sun,
And hold you in the palm of His Hand.

For to His angels He’s given a command,
To guard you in all of your ways,
Upon their hands they will bear you up,
Lest you dash your foot against a stone.

And He will raise you up on eagle’s wings,
Bear you on the breath of dawn,
Make you to shine like the sun,
And hold you in the palm of His Hand.
And hold you in the palm of His Hand.

Hey Wait a Minute

If God is holding me and protecting me, why do I have cancer?

I don’t believe we are supposed to understand everything about God. I also don’t think God planned for me to get cancer. But I do believe, without a doubt, that God is with me, holding me, helping me deal with my pain and symptoms.

Today I was feeling embarrassment more than anger over my work situation. How could I be so naive to think I was important to the company so much that they cared about me as a person? But I thought of the words of Psalm 91 as I played and realized that God is loving me and caring for me, just as he is watching over all creation. God loves me and is holding me in the palm of his hand, keeping me safe. I don’t need to feel anger or embarrassment over my work situation. In the end, it just doesn’t matter.

I’m playing the organ at Immanuel Lutheran in Flatville tomorrow. Before I play the first note I ask God to help me spread his message through my music. I will be listening for his spirit as I play. I hope you all can find your way to communicate with God, too.

My “below-the-neck” scans showed a new lesion in my shoulder. That is the first time I’ve had progression below the neck in over a year. It is just starting to form and it is the only sign of active cancer below my neck. So it is not good news but certainly not awful news. It caught me by surprise so it has taken a few days to digest the news.

Next week I have a brain MRI to check for new tumors. My anxiety level is really high going into this test. But I know my attitude now has nothing to do with what that scan will show. There is either progression or not. But my attitude will help me handle the news. The results of the brain MRI will help determine the treatment for the new bone lesion.

I’m still on my first line of treatment. Since there are only so many known treatments for MBC, it is vital for me to remain on one line of treatment as long as possible. I will live with MBC until I run out of lines of treatments.

If you follow my blog you know I have been planning on taking disability from work soon. I suppose this new progression is at least good timing with that. (Sometimes you have to s t r e t c h to find some positives.) Today was the most disappointing day so far with my current job, and that says a lot. I gave them several month’s notice instead of the typical 2 weeks, trying to be nice with the labor market the way it is. I offered to stay and overlap my successor to help with the transition. Today I found out that my successor, a much younger (read less experience) male is being given a salary higher than mine. This was a gut punch. I went back into work the same day after receiving my diagnosis, because there were things that had to be done. I have worked with a puke bucket next to me after chemo because the payroll/patronage/tax returns/financial statements had to be completed. I’ve sat in the chemo pods at Barnes with my laptop spread out so I could make sure my work was done. When I was in the hospital after my fall and the discovery that the cancer had spread to my brain, I made sure Dave brought my laptop so I could get work done.

This should be a lesson to you; learn from my mistakes. Work should never be a priority. Never. Because work doesn’t care if you have cancer. Work doesn’t care if you are dealing with a terminal illness. Hard work doesn’t get you a pass from illness or a better seat in the afterlife.

Writing is one of my therapies so when I haven’t blogged in a while, you know how I’m doing.

The past 3 months have been a blur of traumas. Family problems. Catastrophic flood. Pain. I’m doing what I need to do to put the pieces back together and help everyone through. I wish i had a “me” who would handle all my problems for me, too. I’m great at caregiving. I’m horrible at asking for and accepting help.

Every morning in the shower I pray. I pray for Andrea, Abigail, Amy, Kathleen, Helen, April, Silke and a host of other friends I’ve met in my MBC groups. It’s Breast Cancer month and I’m not handling the wave of pink well this year. I haven’t logged into my groups. I haven’t messaged anyone or sent snail mail. I haven’t posted about MBC. I just don’t have it in me now.

I’m more exhausted than I’ve ever been and it has nothing to do with MBC except for the physical pain. I’m working on that.

When I’m not helping others, I fake some happiness to some close friends and then retreat to my hole. I tell myself this will all get better. My mom’s house will get finished. My job will go away in a few weeks. I will finally have time to be me, have fun, spend time with my kids and my close friends, sit at my piano, start some sewing projects.

It’s Breast Cancer Month. October 13 is specifically MBC Day. Donate to organizations that research a cure for MBC like Metavivor. Be aware of all the pink things for sale and see where the donations go. Remember that 116 of us are dying every damn day of MBC. I’m not okay. But some day I will be.

Dave and I were married 27 years ago today. That’s the official number, the answer I say aloud when asked. Inside I am screaming, “Not long enough!”

We met in high school – me a senior and him a freshman. It seemed like an insurmountable age gap at times. I went to college and we wrote letters. (I still have a fondness for snail mail.) He eventually joined me at college and those were glorious times. I graduated and had a terrific job opportunity out of state. A lack of communication saw me take the job and move 500 miles away while he finished college. We should have stayed physically together but we were determined to resume the long distance relationship. We did, but it didn’t make those years fulfilling.

Seven years, nine months, and 6 days after our first date we finally were married. It was sure great to live in the same house after living miles apart for so long!

Life is like a song – some low notes and some high notes – but a wonderful song just the same. Those low notes have been rough and many seemed to continue for many measures. Like most, financial pressure seems like a constant. My dad’s years of mental illness and supporting my mom through it took too much of my time and focus. Autism, anxiety and depression cut hard. And just when we were beginning to anticipate our empty nesting phase, we learned that metastatic breast cancer was going to drastically shorten those years.

But those high notes…

We are best friends and love just hanging out or riding in the truck with Indie. We spend our time off work traveling 4 hours to St Louis for my treatments and tests. Both of us look forward to those days together as if they were true vacations since we get to spend the whole day together. We love our 3 very unique and independent and talented kids so much. We laugh a lot. We dance a lot. We sing a lot.

I attend a lot of weddings since I am a church musician. I’ve seen it all! I often wonder if the brides and grooms leave any time in the rush of wedding preparations to really think about the commitment and their vows. “In sickness and in health” takes on a whole new meaning when you’re holding hands in a doctor’s office as you hear them say, “There is never an easy way to say this.” I remember clutching his hand as hard as I could as the room spun and I had the sensation of falling slowly down a deep hole. He’s been to every oncology appointment and every test and every chemo treatment. He was in the ER when I learned that it had spread to my brain. He helped me walk the halls at Barnes when the tumors were making my world spin.

Anyone can do the better, richer, healthy days with you. The focus should be on finding the one to get through the worse, poorer, and cancer-ridden days. I’ve got the best.

Happy Anniversary, Dave. I hope we are lucky enough to celebrate many more.

My last cancer blog was 28 days ago. Here is a run down of what happened in the last 28 days:

☑️ Two chemo treatments

☑️ Closed the fiscal year for my employer

☑️ Processed transactions for > 1000 patronage, stock dividend and equity retirement

☑️ Produced the booklet for the Annual Shareholder’s Meeting

☑️ Accompanied my friend’s flute solo at a community hymn sing and sang in the choir

☑️ Experienced a 1000 – Year rain in my community which put 2 inches of water throughout my basement and ruined some things, including my Christmas tree and a teepee my mom had made for my kids when they were toddlers. But all of this was minor compared to the devastating floods in other parts of the community. The lower 2 levels of my mom’s house were destroyed. People and pets had to be rescued by boats in my community that doesn’t normally have any bodies of water. We received 11 inches of rain in about 5 hours.

☑️ Organized the clean up effort at my mom’s. Thanks to my husband and my sons and my brother, along with tens of other volunteers, we removed the ruined items from the house along with the flooring, drywall and insulation.

☑️ Cleaned up my own basement all by myself after we finished my mom’s house.

☑️ Spent 28 hours in the emergency room with one of my children.

☑️ Made an appearance at the wedding of my cousin’s daughter – an event I had so looked forward to for months. It was during the flood cleanup so our time was limited and I was utterly exhausted.

☑️ Experienced a mental health crisis and ran away from home for a day.

☑️ Watched my kids experience their own mental health crises, caused by the stress of the flood and some horrific parenting mistakes I made in the past.

☑️ Dusted myself off and attended the Annual Shareholder’s Meeting and the Board Reorganization Meeting immediately following where, for the first time ever in 52 years, I failed to meet a deadline. I’m slowly getting caught up on work. Slowly.

☑️ Processed payroll twice

☑️ Had CT-guided injections in my cervical spine for pain relief.

☑️ Played for a funeral.

☑️ Received my first dose of the shingles vaccine because science is cool.

☑️ Moved two kids to college.

☑️ Bought a computer for my mom and recreated her business and financial records that were all destroyed in the flood. (Kinda handy that I’m a CPA for that one.)

On the Flip Side – aka How this Restored my Faith in Humanity

💜 Was blessed by so many family and friends who came to help us at my mom’s. They worked in the muck with us. They brought food. They washed things up that had been in the muck. They donated fans and boxes and dehumidifiers.

💜 Was able to spend time with my favorite brother, who I hadn’t seen in almost 2 years.

💜 Was able to really help my mom out – after all the years of her taking care of me.

💜 Have a friend who will take me in and put me into a quiet bedroom to sleep when I show up unannounced at her door in the middle of the night.

💜 Learned my daughter is amazing and efficient at packing for college on her own, since I was dealing with the flood. Seriously – call her if you need that kind of assistance.

💜 Watched in awe as my 3 guys worked tirelessly to help my mom.

💜 Feeling so blessed to see my 2 college kids loving life. And me.

I’m tired. Physically and mentally and emotionally spent. I think anyone would be, but then you add that pesky stage 4 cancer to the mix and it seems like too much. But I know that as I’m writing this at 2 am, I will be in a church I love in a few hours with one of my sons who has the softest heart and amazing smile. We will enjoy our coffee together (yes – I introduced him to the heavenly beverage). My other son will help me with a small project at home later in the day. And it is highly likely my daughter and I will exchange some funny memes and cat photos with lots of heart emojis throughout the day. I guess I really am living the good life after all.

Today is treatment number 35 which brings to mind this 35:

My house is filled with White Sox fans so when I was thinking about this being the 35th treatment I thought of Frank Thomas (The Big Hurt).

I switched treatment day and location to fit my husband’s new work schedule. I’m downtown at the main campus. Today, by sheer good luck, I am in a private room. It’s very comfy and quiet. I saw my oncologist today. (I only see her every other treatment).

We are lucky to have all 3 kids home now, temporarily. #3 will move to an apartment in two weeks, followed by #2 a few days later. #1 is still hunting for the next move. I wish I wasn’t so busy with work since they are home. That will change soon. I’m having more problems with side effects of treatment than with cancer right now. And that is fine and dandy with me!

Since 2017 I have been the controller of a grain cooperative in Central IL. This week was the start of the busiest 3 weeks in my work year – and that is saying a lot since January is a month when more than a thousand 1099s have to be produced and sent to our patrons. This is the week our audit firm verifies our financials. Then, depending on the decision of our board, it could be a race to produce thousands of dividend and patronage checks; to pay a profit-sharing bonus to employees; to revolve allocated equity; to do the steps necessary to close the fiscal year in our accounting software and begin the new year; to produce a “pretty” version of the financials for the shareholders —— and all this in time for our annual shareholder meeting in mid-August. It was always a mentally and physically exhausting and highly stressful time for me, but this year is really taking its toll on me.

I think back to Wednesday, July 17, 2019 – right smack dab in the middle of audit week. I had found a lump in my breast a week earlier and was scheduled for a diagnostic mammogram that day. I remember explaining to my boss that I had to be gone for a little bit that afternoon and I told him it was an important medical appointment that could not be postponed. I am a department of one at the coop. I’m in charge of the finance and accounting, the IT, and the Human Resources. There is no one to “cover me” in my absence and no one to whom I can delegate. So I had my mammogram and headed back to work. In some ways it was probably good to be so busy with work to distract me from my worry.

Jump ahead to Wednesday, July 24, 2019. The diagnostic mammogram still did not show anything (see my posts about dense breasts if you haven’t already) but the lump could not be ignored so I had an ultrasound and biopsy scheduled that morning. At that point, my husband and I pretty much figured it was breast cancer. But the “little b” kind of breast cancer. The only breast cancer I had ever heard of at the point. The kind you treat and survive. Pink ribbon blah blah blah. I was told it would be a day before I would get results, so I only took the morning off at work. I had been experiencing some intense, occasional abdominal pain for a few days, but my doctor and I had laughed it off as stress – work and the cancer scare. Since I would be there anyway, they scheduled an abdominal ultrasound, too. It was either stress or my gallbladder. My husband and I laughed at the awful timing of gallbladder problems, cancer scare, and my busiest time at work. I told him I didn’t know how I would get everything done if I had to have my gall bladder removed right away. Honestly I thought the cancer would just be something I would tackle over the next year or so and move on.

Dave and I waited in my doctor’s waiting room for the word on my gallbladder. I saw the results of my blood tests come back in the hospital portal so I started searching on the internet to see what the numbers meant. It seemed pretty obvious that there was some kind of cancer in my system. I remember seeing that my calcium levels were high and thinking that was a good thing. (Actually a sign that the cancer had spread to my bones.) I remember seeing that my liver numbers were really bad and a google search told me I had the liver of an alcoholic. That didn’t make sense. Finally they called me back and I heard the nurse practitioner say, “This is never an easy thing to say.” I remember everything about that moment. I can picture it today in vivid detail. I remember grabbing Dave’s hand and feeling like I was falling into a large abyss. It was then that I learned that I had innumerable masses on my liver, that the breast tumor was most likely cancer that had already spread to my liver. I learned that breast cancer often spreads to the liver. They scheduled an abdominal CT for the next day and I ventured out on what can best be described as “the cancer tour,” where we broke the news to the kids and my mom. And then….. I went back to work. Yes. Remember that I am a department of one. No one covers me and I certainly had not planned to be out all day.

I told my coworkers about my day. We were brainstorming how to handle the next couple busy weeks if I had to be out of the office. One announced that she hoped she wouldn’t be expected to handle much of it because she was already too busy. (Can you feel the love?) I stayed in the office several hours that evening (by myself) catching up and working ahead on anything I could since I had another test the next day.

Thursday, July 25 I had the CT scan with results right away that showed the cancer was also in my spine and adrenal gland. I waited until evening to go to the office to work, so I didn’t have to be around anyone.

Over the course of the next couple weeks I met my oncologist at Barnes, had more tests and another biopsy and had my very first chemo treatment. I also managed to do ALL the things I needed to do before the annual stockholder meeting that was less than 4 weeks after my diagnosis. I am strong and determined and my own worst enemy.

As the pressure was building lately I made a huge decision. I am going to go on long term disability beginning in January and take some days off each week until then. MBC qualified me for SSDI upon diagnosis, but there is a 5 month waiting period for benefits to kick in. I have been too scared to think of going that long without income, especially with 2 in college. But I am no longer scared. Dave and I have weathered many storms together and we will weather this one, too. I need to make my health a priority and lower my stress levels. I need to spend more time with my family. I hope January isn’t too long to wait.

Yep. That’s me. Just got the call. Who’s hosting the party?

As I approach my 2 year Cancerversary I started thinking about all the medical procedures I have experienced in the last 100 weeks. Here is most of it, in no particular order:

Cancer treatments – 33

Brain MRI – 6

Chest/Ab/Pelvic CT Scan – 11

Bone Scan – 4

Breast MRI – 1

Breast Biopsy – 1

Lymph Node Biopsy – 1

Gamma Knife – 2 series on 9 total tumors

Radiation – 5 days on 1 adrenal gland tumor

Breast ultrasound – 1

Abdominal ultrasound – 1

Transvaginal ultrasound – 1

Diagnostic mammogram – 1

Complete spine MRI – 2

Cervical spine MRI – 1

Echocardiogram- 5

Heart MRI – 4 (part of clinical study)

Chest X-ray – 2

Thoracentisis – 2

Head CT – 1

Radiology-guided spinal injections – 1

The good news? I have no problems being placed in a loud tube and told to not move for a long time.

The even better news? I’m still here, alive and kicking, and my cancer is “extremely controlled.”

I’ll let you know when I’ve been exposed to so much radiation that I can heat your pop-tart with a touch of my finger.