A Virus, But Not THE Virus

Since my cancer diagnosis I have not had any other illnesses. I am supposed to wear a mask in public places to keep from getting sick. I have also avoided many places, often simply because I’m dealing with cancer side effects. This week broke that string as I have a horrible respiratory virus – but not Covid. I’m glad the Covid test was negative. I have received the vaccine and booster for Covid. I slept through the New Years Eve festivities. This isn’t the way I wished to ring in the new year, but I know I will whip this soon and am looking forward to a brand new year of life.

Rethinking Traditions

It has been almost 2 months since I blogged. I had one round of radiation on the new tumor in my left humorous and my level of pain in that shoulder has reduced significantly. I am continuing on the same treatment and will have scans again in February.

Holidays can be a way to mark time. We think of holidays past, how we celebrated, who we were with and how we felt. Feelings of nostalgia seem to sit on a precipice between wistful and despair. Sometimes our memories are not so warm and fuzzy, and sometimes the people in our memories are only in our memories now through death or severed relationships. The passage of time can be especially painful for many people. I am no exception, especially because I have metastatic breast cancer, a terminal disease. I cannot help but wonder if I will be here next Christmas. I have worked hard this year to make this Christmas one of joy and peace. I want my kids to feel and see and hear my love for them through our celebrations.

2002 – And aren’t they just the sweetest little ones?

I found a photo of my kids and my parents from 2002. When I see it, I am taken back to that day and remember the lovely chaos of Christmas morning with kids who are 5, 19 months, and 3 months. Everyone is smiling, even my dad. A few weeks after this photo, my dad’s illness took a huge turn south and he had to be hospitalized and began a long, sad struggle that only ended upon his death almost 14 years later. That struggle took me away physically and emotionally from my family way too much. It is one of my biggest regrets in life. I never found the right balance between honoring my father and living my own life with my husband and children.

The next photo in the Christmas box was from 2016. Dave and I are with our kids and my mom at a relative’s home. I had one child in high school and one in middle school and one in college. . It was our first Christmas without my dad. The smiles are evident and everyone is leaning in together. I remember that night. It felt like new beginning. My dad was finally not suffering. I wasn’t going to leave my husband and children the next day (Christmas Day) to visit my dad in the nursing home so he wasn’t alone. None of my kids were facing college decisions, part time job woes, or relationship issues. I thought we were finally on the path to peace.

Then there is the photo from last year on Christmas Eve, 2020. It was my second Christmas since my diagnosis. It was the year the pandemic shut down life as we knew it. I was in the midst of home isolation due to Covid, since there was no vaccine and my body could not be taxed with both cancer-fighting and COVID. Dave and I, along with our children and my mom are in our living room. We had dinner and watched old home movies. It was a nice evening – but definitely strained. There was so much uncertainty and chaos in the world and our lives. I had been in Barnes Jewish Hospital in St Louis a month before, after a fall at home. They found that the cancer had spread to my brain, which caused my fall. I had gamma knife on 5 brain lesions in early December and had fluid drained from my right lung the week of Christmas. The discovery that the cancer had spread to my brain significantly lowered my survival probability. My poor children were facing a new pandemic and some really awful news about me. We all wondered what the new year would bring.

Just a few days after that photo it became apparent that 2021 was not going to be easy. My oldest son dealt with starting a new job in a new city during a pandemic. My younger son was isolated in college with only remote learning. My daughter was hospitalized for weeks. They found 6 more brain lesions in March and I had gamma knife treatment a second time. We experienced a “1000 year flood” in August that destroyed half of my mom’s house and I became “project manager” of getting her house back in order. We are not yet done, all these months later. It became apparent that I could not continue working due to my cancer and my company hired someone younger, with less experience, wanted me to train him, and paid him more than me. All this made me reexamine holiday traditions as December rolled around. What would happen if I cooked absolutely nothing for the holidays? What if I didn’t make cookies or candies? What if I wasn’t involved in church music for a holiday service? What if some of the decorations stayed in storage? What if some gatherings didn’t happen? What did my family need to have a memorable Christmas?

The result of this relook at traditions has resulted in the calmest, happiest holiday season I have ever experienced as an adult. And I have stage 4 cancer!

My oldest son put up some of the decorations; much stayed in boxes. I am not physically capable of cleaning my house so I hire that done by someone who cleans better than I ever have and is the nicest person to have around. I have not baked a single cookie or made any candy. I am not playing or singing in any holiday worship services or musical productions. I did not send any cards. I cut my gift list down to the bare minimum. On Christmas Eve, every single thing eaten in this house will be store-made. And yet…

Tomorrow we will all go to church, wearing masks. This will be the first time we will all be together in a worship service since my dad’s funeral. It is the only thing I wanted for Christmas. We will come home to food prepared by someone else, board games, and singing at the piano. There is no stress. There is no anxiety. I think this just might be the best Christmas ever – despite all traditions being tossed aside.

I have no idea what 2022 will bring to my family. But I know that God will be with us all the time. I also know that my family will continue to make memories that last, even if they are breaking tradition.

Refuge

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.

Disappointment

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.

Looks Can Be Deceiving

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

Me

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.

In Sickness and in Health

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!

9/10/1994

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.

Insane in the Membrane

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.

The Big Hurt (but not really)

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

The Big Hurt

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!

Still Storming On