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.
During a rather long spell of depressing days I found peace and joy at an unexpected place.
I spent 8 years as a teacher in between my years of accounting. It was, by far, my favorite job. In my second year I was teaching 7th grade math. I was the only math teacher for the whole grade level of 130 students. It was hard to develop connections with them but I tried my best. On the first day I had a new student – a girl who had just moved to the town to live with her aunt. Her mom had recently died of cancer. She was extremely quiet but always kind to everyone around her. That lovely young student is now married (to another former student). They have children and own a local business.
Fast forward to a few weeks ago when I decided to try a new nail salon in a small town near our farm. I sat down and was so surprised to see this former student of mine preparing to give me a pedicure. (She is doing this part time for a little extra income.) We talked the entire time, catching up on our lives. When she heard about my diagnosis she asked how my kids are doing with it. She shared what it was like for her as her mom dealt with cancer and what it is like for her, today, to still miss her mom in so many ways.
She gave me some of the best advice: Put as much of yourself into your kids while you can.
She was very young so there are life events like marriage and parenting that she never discussed with her mom. She would like to talk to her and ask her questions. My student gave me the same sweet smile I remember from so many years ago and told me she knows she will see her mom again and they will catch up, but she wishes she had more memories of her to get her by until that time.
I think that advice is great for anyone who loves someone else, no matter what your age or state of health. We parents seem to focus on working to get “stuff” for our kids and making the “big” memories. It seems that the small, everyday happenings are where the most long-lasting memories are created. I will be making some changes in my life so that I have plenty of opportunity to put a lot of myself in my kids. I cannot wait!
I have been a care giver for most of my life, even as a child. That caregiving led to the need to control situations that I could not influence, which led to constant levels of anxiety that were exhausting. My anxiety and desire to control did not allow me to be the mom I should have been. I’ve been struggling recently with some decisions that are needed to improve my quality of life.
When I was first diagnosed with de novo MBC, it was right during audit week at my company – the busiest time of the year for me. On top of reeling with the news and trying to digest what that meant for me, I also knew it was up to me to get the end of fiscal year activities completed, since I am a department of one. I have continued to work since my income is needed by my family and because my health insurance comes through my employment there. I think I also needed to continue working to prove that cancer would not change me; would not get the best of me; would not slow me down. Fast forward 2 years and I find myself in the same busy season at work – the audit is next week. I will be working in the elevator office everyday next week and I’m worried how my body will handle it. I also know that cancer has changed me and has slowed me down. I really don’t feel the need to prove anything to anyone now.
LEARNING TO TAKE
My priority goal now is to accept help; to allow others to care for me. I am hiring my house cleaned, since there are things I cannot do physically and others that make me so tired that I cannot do anything else the rest of the day if I clean. That is no way to live. I am napping when I am tired. My body tries to tell me what it needs and I am determined to stop and listen to it. I am re-thinking meal planning and grocery shopping since Dave and I will soon be empty nesters. I am not a fan of cooking so I need to shop differently so I don’t eat junk food just because I’m too tired to prepare a meal.
Tomorrow I have treatment 33 at Barnes. Dave will get home from work around 4:30 am in time to shower and grab a quick nap before we leave at 6:30 to head to St Louis. After my treatment I will get a brain MRI. It has been 3 months since I had the second round of gamma knife on my brain tumors so it is time to see what is happening up there. The word I want to hear from the result is “unremarkable.” That would mean the 9 tumors that have been treated are the same or smaller and there are no new tumors. When you have MBC you live your life in 3 month time spans. “Good scans” let you breathe a sigh of relief for another 3 months. Bad scans mean you have to gear up for another battle. I won’t get results until late Thursday so I need to just let this anxiety go, which is easier said than done. No amount of worrying will change what is happening in my brain now in terms of cancer. I need to have the scan so we know what we are dealing with. Still, I’m typing this at 3 am so that pretty much tells you where my mind is.
I have not blogged lately. I have not even journaled privately lately. Why is it when you most need to do something to help yourself, you don’t? Keeping up the bravado is exhausting. My therapist says that I need to allow myself to be honest to find some peace.
Two years ago today (7/10/2019) I walk-jogged 10K after work and stepped into the shower to cool off. Instantly I felt what seemed to be a huge lump in my right breast. My mind raced. Had I missed it before? How could I have missed it? Could this be cancer? How could it be cancer? I hurried out of the shower to have Dave confirm that I was not imagining things.
My therapist asked me what the worst part is of having terminal cancer. That was easy to answer: constant exhaustion. Sure, there is physical fatigue. What I’m talking about is the sheer mental exhaustion from never ever ever being able to escape from cancer in my mind. Since my diagnosis of de novo MBC, I have not gone more than 10 minutes without thinking about cancer. For the last 716 days of my life I have not been able to go 10 minutes without thinking about cancer. Sleep doesn’t help as I frequently dream about cancer, too.
Last week I attended the wedding of a high school classmate. Two of my dearest friends were there along with several other classmates. I hope that none of them knew what was playing out in my mind. I tried to stay joyful. But I see my friends living their lives without the threat of impending death and I am so utterly jealous and bitter that I am ashamed. There was talk of our 35th reunion next year and who would plan it from our class. I was wondering if I will be able to attend. There was talk of future retirement plans. I will not live to see retirement. Some classmates have grandchildren. I wonder if I will even see all my kids graduate from college or get married. I am pretty sure I will never hold a grandchild. I looked at the bride and groom and fervently hoped they will have 50 years of happiness together. At the same time, I realize that cancer will rob me of decades of time with my husband, who is my high school sweetheart and the love of my life.
My grandma always said, “You can laugh or cry about your troubles, but life is more fun when you laugh.” I do my best at laughing about cancer. My friend, Sara, and my daughter understand my dark sense of humor and indulge me. I don’t often show anyone my true feelings. My therapist gets the brunt of it all. People who love me need to see me being the brave warrior. The determined stoic. No one would want to be around me if I showed them the part of me that is terrified of so many things —- brain tumors that incapacitate me, needing people to care for my daily needs, increased pain, leaving my kids without a mom, leaving my mom without a daughter, leaving my soulmate, wondering if people will eventually forget me, wondering if other people will replace me.
At my darkest moments I always turn to God. I have learned that there are things in life that are not meant for me to understand. I just need to know that God is there for me. Always. And God is there for my kids. And my mom. And my best friends. And my incredible, amazing Dave.
So all these thoughts are whirring around me all day every day. Almost two years of it. I’m exhausted and need a huge break. I need to lay down the yoke. I need to work less and ask for help more. I cannot continue physically fighting cancer when my mind is so tired.
It’s 2 am and I’m tired of being honest now. My lab, Indie, is waiting for me to turn off the lights and go to sleep. I’m going to curl up with her and try to dream about all the people who love me. Tomorrow is a new day.
I’m at Siteman Cancer Center for treatment 34! I receive treatment every 3 weeks so you can do the math to see that I’m almost at my 2 year Cancerversary. (That event is certainly worth celebrating!)
Yesterday I learned my cancer from the neck down is stable. That means there were no changes from the previous scans 3 months ago. I’m metastatic so my cancer is not going away. The goal is to keep it under control and we are achieving that. Today my labs were all totally normal, which is the first time that has happened. I’m in Chemo Pod 5 with my favorite 2 nurses, Charis and Skip. So things are looking up today.
This is our second trip to St Louis this week. I’m so fortunate to have Dave by my side in life. We have a good time visiting and listening to music on our drives. I’m praying hard for good results from my brain MRI in July. I want to stay on this positive roll.
On Monday I had my quarterly bone scan and chest/ab/pelvic CT scan. They called today to say that all the cancer below the neck continues to remain stable. July 14 is my next brain MRI to see how it is all going “above the neck.” Until then the mood here is:
My friend shared a video of Postmodern Jukebox on social media during the heart of the pandemic. I clicked and fell in love. I work in my office with my PMJ playlist in the background.
Wikipedia describes PMJ like this: “Postmodern Jukebox, also widely known by the acronym PMJ, is a rotating musical collective founded by arranger and pianist Scott Bradlee in 2011. PMJ is known for reworking popular modern music into different vintage genres, especially early 20th century forms such as swing and jazz. Postmodern Jukebox has amassed over 1.4 billion YouTube views and 5 million subscribers.”
I opened IG and up pops an announcement of their tour. I searched for locations and spotted Joliet’s Rialto Square Theater in Joliet, IL which is only one and a half hours from our little rural area. So I texted my friend and both husbands and, a couple minutes later, we are the proud and excited owners of 4 tickets in the second row. (To be honest, my husband is at work without access to his phone and her husband is probably asleep, but they will be excited in a few hours when they check their phones!) The four of us utterly love jazz music and live music and each other, so I know this will be an amazing night for all of us.
The concert is March 3, 2022. For many of us, it is tough to plan that far out because we don’t know what is happening on our calendar that far in advance. Here in Central IL in early March we will have potential winter storms to possibly derail our plans.
Will that be a bad day when I am not able to attend a concert so far from home? Will I be recovering from yet another medical procedure? Will I be alive?
Matthew 17:20 Mustard Seed
20 He replied, “Because you have so little faith. Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.”
Before you think, “that’s right Heidi, just think positive” —- check out an older blog on how complicated the concept of positivity is. Research “toxic positivity.” A whole lot of really “positive” people die everyday. Please do not ever tell a cancer patient to “think positive.”
I’m buying the tickets because I want to keep planning things out in my future without worrying if I will be alive, or alive and well enough, to enjoy something in my life. I bought the tickets because I want to see that on my calendar for the next 8 months and smile.
So I planted a mustard seed tonight and I’m gonna watch it grow.