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.
My husband and I attended the Champaign County Farm Bureau Harvest Gala, a fundraiser for their scholarship program. It was my first time at any large gathering in over 18 months due to Covid and it felt amazing to mix and mingle with people I haven’t seen in so long.
Very few people recognized me due to my chemo makeover – gray, short hair and glasses. That was actually nice because I could politely avoid people I didn’t have time to talk to because they had no idea who I was. It was also a kick in the gut to have to introduce myself to former co-workers and good friends who stared blankly when I greeted them by name. The last 23 months of my life have changed me into a different person, physically and mentally, it seems.
Jump to this morning when I went to our local hospital for CT guided spinal injections. There was some delay when I insisted they use my power port, as no one working in the unit this morning knew how to access it. They finally found an RN from another unit who came down to access my port. Three other nurses used my access as training – something I love. When I was a teacher I told my students I believed in lifelong learning and I still do today.
The procedure went well and I am home resting. That is FOR SURE the hardest part of the day. The discharge nurse reiterated that, even if I feel good, I need to rest all day. Nurse Indie is glad to have me home and finds no problem laying with my on the couch.
When I think back to the last 24 hours, or the last week, or the last year, or the last 2 years, I am overwhelmed by all the ups and downs. I’m hanging on for this wild ride as long as I can. The highs are extra high and the lows always pass on by.
On 7/24/2019 I was told that the lump I had found in my breast 3 weeks earlier was cancerous and had already spread to the liver, bones and adrenal gland. From that day forward, my health has been a full time job. This is on top of my other full time job that provides health insurance and my family’s main source of income. I qualified for SSDI immediately based upon my diagnosis BUT there is a 5 month waiting period for benefits to begin AND a 24 month period before I could get Medicare. Average life expectancy for MBC is around 2.5 years. Thus, by the time a person with MBC is able to get Medicare, there is not much time left in their life.
The Metastatic Breast Cancer Access to Care Act (S. 1312/H.R. 3183) will amend the Social Security Act to eliminate waiting periods for social security disability insurance benefits (SSDI) and Medicare coverage for eligible individuals with metastatic breast cancer. This means I could file for SSDI and start receiving benefits immediately. This means I would also have Medicare and not have to pay for COBRA. This means I could focus on my health as my main priority – getting adequate rest, plenty of water, daily exercise and nutrition . In real terms this means that on days when my bone pain is horrible, I can rest instead of pushing through to keep working. This means on days when my chemo-damaged intestines expel food in a surprise fashion, I would be able to rest and stay hydrated. This means that instead of working a full day and then being so tired I need to go to bed, I could use my waking hours to visit family and friends. I could do things with my family – my husband, my three kids, my elderly mom – in the remaining time I have left.
The most effective messages are those which are personalized with your story. Please contact your senators and representative and tell them how MBC has affected you or someone you know or someone you love. Tell them my story. Ask them to sponsor this bill
I’m getting a cervical spine MRI today to determine the cause of my pain. I usually get scanxiety, but today I’m only looking forward to a step toward better pain relief. Four hours in the clanging tube today will test my meditation skills, but I’ve been practicing. I begin my tests by praying. My prayer list grows longer as I meet new friends in the MBC community.
My first instinct upon seeing the sunrise is to sing, “Oh What a Beautiful Morning.” It was especially pretty as I looked northeast beyond the pasture today. This is the day the Lord has made; let us rejoice and be glad in it!
Treatment 32 today. They wanted to do a cervical spine MRI to see why I’m in so much pain. They could not do it today because my health insurance company wouldn’t approve it today. They said it requires a 2 day review. So I will make the 3.5 hour drive back down here next Tuesday.
There surely is a special place in hell for health insurance decision makers.
Terms associated with war are often associated with cancer. Many cancer patients despise them because dying of cancer does not mean you did not fight hard enough to beat cancer. No matter how hard I try, I will die from metastatic breast cancer. (I’m generally okay with the terms – so please don’t think that is the focus of this post. ) I’m experiencing a lot more pain the last few days and it makes me wonder about the difference between accepting and fighting.
I have a great medical team working to help me live a great life with my family. My therapeutic massages relieve my pain – I only wish I could afford them more often. Staying active hurts but also helps me in the long run.
The day I found the lump in my breast is the same day I ran 10k for the first time. I discovered cancer when I was in the best physical shape I had been in for decades. Twenty-two months later I am in the worst physical shape ever. And I know it will only get worse – not because I am lazy or not “fighting.” My Fitbit is now set to a pathetic daily step goal of 5000. Most days I make it, but not all. There are so many things I cannot physically tolerate anymore. And I hate it. And I fight it, mentally and physically. And I am tired of fighting it.
I am trying to shift my thoughts to accepting the realities of stage 4 cancer and resilience. I am trying to be resilient instead of warring. There is a thin line between accepting and fighting; I’m trying to find that line and keep my balance on it.
I have a new personal trainer who is relentless. She makes me keep walking when I’m tired. My view the entire time we are walking is her butt in front of me, relentlessly moving forward. She wants to walk no matter the time or day, the weather, or how I feel.
Our walks in the tiny town I live near take us by the Elliott Veterans Memorial. Yesterday I was in so much pain that I wondered if I would have to call someone to pick us up. I stopped at the memorial to reflect on Memorial Day.
I am proud that we have this memorial in a town of 300. I am especially proud of this bench in memory of my dad, an Air Force Veteran.
I sat on the bench and Indie immediately put her chin on my legs. You see, my personal trainer also knows when I need a moment. It was that moment that I became determined to shift my focus from fighting reality to accepting it, while working to make the most of this life with stage 4 cancer. I refuse to see 5000 steps as a defeat. I also refuse to look at the days I cannot muster that many as a bad day. So I will continue to work hard for the best life I can have with Dave, Ross, Darrin and Haley. And I will accept that those days will not be like they were 2 years ago. Despite my physical limitations, I intend to make every day one filled with joy.
May is Mental Health Month. I am a member of NAMI, National Alliance on Mental Illness. A benefit of the pandemic is that meetings and classes are offered online which make it easier to participate. I’ve been a NAMI member for several years. The stigma of mental illness stings, whether it is you or a loved one. I have been on both sides of that coin.
Although I did not realize it until I was a young adult, I now realize I have battled anxiety my entire life. I’ve also beat myself up over my anxiety my whole life. I’m the closet cryer; the one who slips off to her car in the parking lot at work to have a meltdown; the one who locks herself in the bathroom with the water running to cry so her family doesn’t hear; the one with chronic insomnia because I keep replaying events in my head to berate myself over how I SHOULD have handled things. Let me tell you —- being diagnosed with terminal cancer exacerbated my anxiety! I was seeing a therapist when I was diagnosed. I had to cancel appointments because I was so busy taking care of my physical health. Then my therapist left the practice. Then came the pandemic and I didn’t want to find a new therapist via Zoom. This spring I found a new therapist and see her weekly. I look forward to our visits and am learning to put her suggestions to use in my daily living. I also take some medicine to help me.
My first time seeing a therapist was in my twenties when i first started noticing that other people seemed happier with themselves than I thought was possible. She helped me understand how certain parts of my life and events from the past affected me. Our conversations helped me “own” my anxiety.
I have loved several people who had periods of mental illness. It began as a small girl as I watched my dad get ready in the morning. He had the cup and brush to apply soap before shaving. I would stand by him and watch, just to be near my daddy. I remember him reaching for a little bottle of pills. I asked him what that was for and he told me it helped him on days when he had a lot of nerves. I accepted that and never asked more. Mind you, I couldn’t have been more than 5. As a child I understood what so many adults fail to grasp today: If you have diabetes you need insulin. If you have anxiety or depression you need medicine.
I have so many stories of loved ones and mental illness. They are excruciatingly personal and so they are their stories to share; not mine. Sometime I will blog about my lifetime of loving my dad while he had mental illness. You see, that stigma is powerful and that story has chapters that will never be suitable for sharing on a blog.
Let’s take a stand to talk about our own experiences with mental illness, the medications we need, and how wonderful talk therapy can be to sort through all that is running through our thoughts.