Scanxiety

Scanxiety is a term commonly used by metastatic breast cancer patients. It is the anxiety we experience when it is time for tests to evaluate the effectiveness of our treatment.

The first time I met my oncologist she told me that battling MBC is a marathon, not a sprint. For cancer in earlier stages, treatment is more harsh because the idea is to blast the cancer away to achieve remission. Since there is no cure for MBC, the goal of treatments is to control the cancer while keeping that patient strong enough to keep battling. In two days I will have a bone scan, chest/abdominal CT scan and a brain MRI. My last bone scan and chest/abdominal CT were in mid-November and they showed that my cancer was “extremely stable” according to my oncologist. For me that meant that all bones lesions showed signed of healing, the adrenal tumor was unchanged and the liver lesions had decreased in number and size.

I only had a few days to celebrate those results. Less than two weeks later I experienced extreme vertigo and passed out in the bathroom in the middle of the night. I bumped my head in the fall and ended up in the emergency room. Tests showed that the cancer had spread to my brain. I had gamma knife treatment on 3 brain tumors. It is now three months later and time for another round of scans. This Tuesday I will have a bone scan, brain MRI and chest/abdominal CT scan.

I have a bad case of scanxiety. My thoughts race. At times I wish I did not have to wait any longer for the tests because I want to know if the treatment is working. At times I wish I the scans were canceled because I am afraid they will have bad news. At times I think of how important it is to “know you enemy”. At times I am sure that my cancer is still extremely controlled. At times I am certain that they will find more brain tumors.

Telling me to “think positive” is not helpful. Prayers for good scans and peace of mind are helpful, as is inappropriate humor.

Health Insurance Hassle

Learning that I had breast cancer that had already spread to my bones, liver and adrenal gland was overwhelming. Of course I was devastated, but immediately realized that I had to figure out what to do next. My primary care provider (PCP) suggested a large research hospital. My first thought was Mayo, but it is not a network provider for my health insurance. My PCP is a graduate of Washington University and suggested Barnes Jewish Hospital/Washington University in St. Louis, which is about 3.5 hours from my house. Barnes is not a network provider for my health insurance, but is considered tertiary – meaning my insurance might approve them if it is necessary to seek treatment beyond what in-network hospitals can provide. My PCP set up an appointment with a breast cancer oncologist and my battle with health insurance began.

My insurance company assigned me a nurse care coordinator named Heather. You know how Mr. Rogers said to look for the helpers? Heather is definitely one of those. She monitors my symptoms and side effects and helps me navigate the health care system. As a former oncology nurse, she understands the medications and treatments and tests. I have learned so much about health insurance from her including some tricks to work with the claims department.

I learned that my insurance had approved my treatment at Barnes as I was driving down there for my first appointment. (I took a leap of faith and scheduled the first available appointment and hoped things would work out.) Since my diagnosis was de novo (stage 4 from the start), my type of breast cancer is very aggressive, and I had extensive metastasis (spread), my insurance agrees that I need to be treated at a larger hospital than anything closer to me. This means that they allow my treatment there to be considered in-network (covered at a higher rate with a lower deductible), even though Barnes is technically an out-of-network provider.

You would think, then, that I wouldn’t have any further problems with that decision, but I do. Frequently claims are processed as out-of-network. That is when the battle begins to get it changed to in-network. I always try to work with customer service myself first and then get help from Heather if that doesn’t work. Sometimes she can get it corrected herself. Other times we involve my PCP’s office for assistance. Sometimes I have to call my oncology nurse coordinator at Wash U for some help. I log into the online portal for my health insurance every day to monitor my claims. I have time scheduled in my google calendar twice a week to make calls about any problems.

I have become an expert at health insurance terms and understanding all the details of my policy. Next Tuesday is a huge day for me in St. Louis. I will have: brain MRI, bone scan, abdomen/chest CT scan, neurology appointment, radiology appointment. I spent time on the phone yesterday to verify that all procedures had been authorized as in-network. They had not, so I made calls to get that corrected and was able to verify that the correct authorization was in place late this afternoon. I also had to make sure the neurologist and radiologist I will see had been referred by my PCP. I was able to verify that earlier this week. When the claims are filed, I will monitor their progress in the online portal to make sure they keep their in-network status. I have a large binder that I use to track all this, with very detailed notes for each phone call.

Is it worth the hassle? Absolutely! I have complete confidence in my oncology team at Barnes/Wash U. By being vigilant in tracking my claims, I am able to ensue that I only spend the annual out-of-pocket maximum. That is a 5-figure number and a scary amount to pay annually, but one-fourth of what I would pay if any of the claims are considered out-of-network. Thanks to the Affordable Care Act, my policy has an out of pocket annual maximum and no lifetime limitation. Each treatment I receive has a claim cost around $40,000, not to mention the cost of the scans. I am grateful for the health insurance I have and I remind myself of that when I am weary from working full-time with stage 4 cancer. It is absurd that health insurance is tied to employment in our country. It is absurd that anyone with terminal cancer who qualifies for social security disability has to keep working in order to keep health insurance. I should be on disability and focusing on my health and spending time with my family, not working full time to keep myself alive and my family financially stable. I believe that working full time is lessening my survival time. But I also believe that not having quality health insurance and the money to pay for care at a fantastic research hospital would also lessen my survival time. It sure seems like we should be doing this in a better way in our country.

Unbecoming

In the two years leading up to my diagnosis with metastatic breast cancer I had been undergoing a major transition. On the physical side I had joined a weight loss program and was in the process of losing 90 pounds. I took up walking and then jogging. On the emotional side I had started seeing a therapist who helped me handle several issues, the foremost was the idea that I am not in control – and that my need to control situations was a result of anxiety. I was not allowing those in my life to fail or succeed on their own. On the faith side I had a real awakening about my relationship with God and was learning to let God be God; I had to stop trying to control my life and take time to breathe and allow God to help me. All of that was hard work but worth it because I liked the person I was becoming.

But wait…

Was I really becoming a new person? Losing weight did not make me a new person; it gave me the confidence to show myself to outsiders and stop hiding things inside. Therapy certainly did not make me a new person; the goal was to figure out my thoughts and emotions and allow the real me to comfortably exist in the world. My reawakened faith did not make me a new person; accepting that God was in control and actively working in my life gave me a life preserver that let me stop worrying (okay, at least some of it) and focus on the good. The journey I was on helped me recharge some relationships. I learned to make time for the activities I enjoy because those things were important to me.

Since July 2019 I’ve been on a different journey – my cancer journey. My first blog post talked about how much cancer has changed me.

But wait…

Today I have been wondering if I have that all wrong. To be fair, cancer is definitely changing the physical side of me. It is also easy to say that cancer is changing me inside, too. But maybe, just maybe, this journey is also helping me discard all the the things that aren’t me. I wonder if instead of becoming a different person, this journey is helping me to lay aside all the things that are not me so I can focus on the real me that has always been here.

I have always tried to be the best mom I can be for my kids. Cancer has limited my ability to be the kind of mom I think I should be, and also given me the shove to be the kind of mom I think I should be. To be sure, I have physical limitations now. But I also have no problems taking time off work or turning off my work notifications on my phone at the end of a work day. I don’t think about doing something fun with my kids; I actually make the plans. I don’t think about having important conversations with them; I have the conversations.

My cancer journey is making me determine who I really am and what I want out of life – and fast. It is forcing me to unbecome all the parts of my life that are not the real me. Playing the piano is central to who I am and how I talk to God, so I don’t think about playing when I get “everything else” done; I make time to play almost every day. Spending time with my husband, kids and mom has always been important, but now I grasp that time is not an infinite resource. One has to do the important things today and every day because the “some days” might not happen. My cancer journey is helping me give up the “shoulds.” I don’t do many things anymore simply because “I should.”

I think I am on a journey of unbecoming all the unimportant parts of me so that what is left is who I really am and who I have been from the start. Don’t wait for a cancer diagnosis —— start unbecoming today.

XXVIII

Today is my 28th treatment. I receive Herceptin and Perjeta every three weeks via infusion. These drugs are specifically designed to target tumors that produce more HER2 protein. Every twelve weeks I receive an infusion of Zometa to target my bone mets. (Mets = metastasis = where my breast cancer has spread in other parts of my body)

I receive my treatment from Barnes Hospital/Washington University, in St Louis. It is a 3 hour 45 min drive from home. It might seem odd, but I absolutely love treatment days. It is a day of actively treating the cancer, while the other days I am left to wonder if it is working. In 19 months of coming to Barnes, every single staff member had been extremely considerate and competent.

I adore my oncologist. She never rushes through my appointments and personally calls me with information rather than delegating that to her nurse coordinator. Since this is a research hospital I have a team of doctors who are reviewing my chart and recommending treatment. I am confident that they are doing the best they can for me. And that is good for my mental and physical health!

Today I am Chemo Pod 2. There are five pods here. One of the pods is reserved for people in clinical trials. That is because the nurses have to be specially trained in administering the medication for the trials. I am participating in 3 clinical trials at the moment, but none involves medication. Here at Siteman South County we have tons of windows. There are 2 nurses assigned to my pod, with several others who float around. Until Covid, my husband could sit with me during treatment. Now he waits in the car and we text frequently.

I hope you enjoyed the “tour” today. I think it’s time for a nap…

I’m fine. Everything’s fine.

Now that I am vaccinated I have started venturing out in the world a little. I went grocery shopping for the first time in over a year. I had my teeth cleaned. (My poor hygienist had to use a chisel and pick axe to get them clean!) I practiced the organ in an empty church. I met my childhood friends for dinner in our favorite restaurant, where we sat in a heated outdoor patio. I had not seen them since October. I even took my college-age son shopping for odds and ends. I hope I never take these things for granted again.

I followed a Twitter thread today that discussed anticipatory grief. It refers to a feeling of grief before an impending loss, but not necessarily death. One can experience anticipatory grief before a scheduled move or job change or major life event. The particular Twitter thread today discussed the anticipatory grief that people with metastatic breast cancer (MBC) experience.

I grieve the life I won’t experience.

My husband and I often talked about what we would do in retirement. We were high school sweethearts and have been together for 34 years. I always pictured us growing old together, enjoying life on the farm and traveling wherever our kids live for visits. I immensely enjoy watching my kids grow into adulthood. You work so hard to raise them so you can see the kind of people they are as adults – independent thinkers. You want to see them making choices that are solely theirs – that you put enough “good stuff” in them to sustain them through their life.

I grieve the life I had before cancer.

Sometimes it is hard for me to remember how I felt about things before cancer. What did I worry about? What kept me awake at night? My cancer was already at Stage 4 when I was diagnosed, so we don’t know exactly when it started. When I look at photos from several months before my diagnosis my mind starts to play a horrible game called, “Where was the cancer at this point? Was it already in my liver? When did it reach my bones? Was my adrenal gland already covered in a huge tumor?” I miss living a basically pain-free life now that I battle pain every single day. I don’t miss my hair but I sure do miss my eyelashes! (Those things come in very handy, beside looking nice coated in my favorite mascara.)

I work very hard to keep my focus on living rather than on dying. But that anticipatory grief creeps in when I least expect it. Listening to people talk about retirement plans or when they will retire will do it. Seeing parents talk about their kids getting married will do it. My solution at the moment to handle anticipatory grief is to face it head on. I certainly don’t want my friends and family to avoid discussing certain topics around me. That’s not living! So when I feel the sadness creep up, I throw it up to God silently while staying in the conversation or situation. I also try very hard to instantly think of things I can do, today, to make up for the thing I think I will miss. I am enjoying spending much more time with my family and friends. I am trying to put much more of me into life, versus sitting back and waiting for things to happen.

Someone today told me they think I have such a positive attitude and they cannot believe I laugh so much. My grandma said, “You can laugh or you can cry. Laughing is much more fun.” I try to follow her advice. When people ask, “How are you?” The first thing that usually pops up is, “I’m fine except for the terminal cancer.” There is a lot of truth to that.

The Best Medicine

One of my favorite quotes is by Kelsey Grammer: “ Prayer is when you talk to God. Meditation is when you’re listening. Playing the piano allows you to do both at the same time.”

I received my second dose of Covid-19 vaccine this week at our local hospital. Full immunity should be developed ten days after the second shot. As I joyfully left the hospital with my husband, I was so excited about the first place I will going post-vaccine. Consider that since March of 2019 I have spent 99% of my life at my house or medical facilities. The first place I will go will be to play the organ and piano for a church service! That is the perfect place for my first real outing. I have missed worshiping in church so badly. Online church services and Bible studies are terrific, but just not the same for me as worshiping with other people.

I began piano lessons at age six with my wonderful elementary music teacher. She helped a very shy introvert find her voice at the piano. She encouraged me to sing along as I played and taught me to FEEL the music. I spent eight years going to her house for weekly lessons! Vocal music was her specialty so she found another teacher for me who concentrated on piano. My new piano teacher really pushed me technically. Part of each lesson’s warm-up was sight-reading. She taught me how to examine a piece of music before I ever tried to play it. My strength at the piano today is sight-reading, and I credit her with that. I took piano lessons as a college class for a few semesters. I could not tell you my professor’s name and I’m pretty sure I’m not a memorable student for her. I took lessons because that gave me 24/7 access to the sound-proof practice rooms in the music building! You could find me late at night, alone in a practice room, playing anything BUT what I was supposed to work on for class.

My second favorite instrument is the organ. When I was 11, the organist at my church offered to give me organ lessons. I began playing a prelude for church. When I improved more, I would play the offertory, too. My denomination had liturgy so I started learning that. I would play one part of the liturgy with her on my right side. When the service reached a part I didn’t know yet, she would slide across and take over, without a break in the service. We were a great team! We played piano and organ duets often. When I was twelve her daughter who lived hundreds of miles away gave birth to her first baby and needed her mom. My teacher told me I was ready to play for a whole service on my own. I was utterly terrified, but I did it!

I have enjoyed part-time, full-time, and substitute music positions at many churches in my area. Before Covid, I had a regular part-time gig at a huge church about 40 min from my house. I am not a member, but still consider that church to be “one of my home churches.” They stuck with me after my diagnosis and chemo, understanding that some mornings I just wasn’t 100%. Home isolation brought that to a screeching halt. When I received the call that the second vaccine dose was scheduled, my next communication was to that church, to see if they would put me back in the rotation. Playing for 2 Sunday morning services on March 14 will be my first post-vaccine outing and I am so excited to be back at the bench.

When I play piano or organ, I understand exactly what Kelsey Grammer meant. I do my best thinking at the bench. I am constantly talking to God or listening for an answer. When something is troubling me, I can play the piano for an hour or so and have it all worked out in my mind when I close the piano and stand up. I remember the night I returned home from my first trip to Barnes Hospital to meet my oncologist. I sat at the piano and played and cried for hours. It was the only thing I knew that could help me sort it out.

I am so grateful for my teachers. I am most grateful for my mom and dad, who paid for lessons and music books, who drove me to and from lessons, who encouraged me to practice. We didn’t have a dishwasher so after dinner each night I had a choice of washing dishes or practicing the piano. You had better believe that I practiced the piano every single day of the week – sometimes twice in a day! My dad would take me to church at night to practice the organ and stay there with me. Dark empty churches are spooky places! My parents gave me many valuable gifts, but the best was encouraging my passion for keyboards. I cannot imagine dealing with this cancer journey without being able to sit at my piano for a “therapy session.”

Tonight I found myself home alone and wrestling with fear and doubt. I sat at my piano for a couple hours and had a silent but animated discussion with God. (Sometimes those forte measures are my version of yelling.) I don’t have all the answers, but I have everything back in the right places in my mind, thanks to my piano and my Teacher.

Practically Positive?

~ I believe it is very important to stay positive.

~ I believe no one should tell someone else who is hurting to “stay positive.”

~ I have told people to “stay positive” in the past and I sincerely apologize to each one of you.

My definition of positive looks different than other people’s definition. I take my definition of positive from my favorite book of the Bible, The Psalms.

Psalm 13:1-2 is wonderfully uplifting: How long, O Lord? Will you forget me forever? How long will you hide your face from me? How long must I take counsel in my soul and have sorrow in my heart all the day? How long shall my enemy be exalted over me?

One of my favorite hymns cheerily begins with the lines from Psalm 130: Out of the depths I cry to you, O Lord! O Lord, hear my voice! Let your ears be attentive to the voice of my pleas for mercy!

Psalm 88:14-15 is really upbeat: O Lord, why do you cast my soul away? Why do you hide you face from me? Afflicted and close to death from my youth up, I suffer your terror; I am helpless.

My oncologist told me in the fall of 2019 that I had somewhere between 2 and 30 years left to live. When I told people that, several remarked that most people my age could say that. (Not helpful or true!) After we learned the cancer had spread to my brain, my oncologist would not give me an update in years, but did tell me I should switch to working no more than half time so that I could spend time with family. (Yikes and no, half time at my company is not an option. I am a department of one. ) I have researched this and have learned that oncologists are trained to take the true predicted life expectancy and multiply by 3 to get the top number and divide by 4 to get the bottom number. Ten times 3 is thirty and ten divided by four is two and change. Since the median life expectancy for all MBC patients is 2.5 years, I really didn’t learn anything from asking my oncologist this, and I don’t believe it is a question that has an answer. Through online groups I know many people who have endured MBC more than a decade. At Barnes (pre-Covid) I met 3 volunteers who have had MBC 13, 15, and 17 years. Sadly, I also know many in my online groups who don’t make that 3 year mark. If you are keeping score at home, it has been 19 months since my diagnosis.

My definition of positive doesn’t allow me to poke my head in the sand and continue life without changes. My definition of positive does not allow me to wallow constantly in misery. I intend to only die once – meaning I need to focus on living so that death only gets its one moment with me. My bucket list has changed. I’ve already hit the first, my oldest child’s college graduation. (Darn you, Covid, for making an actual ceremony impossible.) The remaining items (so far) are: my youngest child’s high school graduation, my middle child’s college graduation, and my youngest child’s college graduation. My youngest is thinking of med school so I better stay focused on my treatments and taking care of myself! The final entry is to enjoy my remaining years with my husband and kids. Are there other things I’d like to experience? You betcha. Those are the things God and I talk about late at night.

So what does positive look like for me? Positive means I am working to support my family. It means that I have a bucket list that looks several years in the future, well past my median life expectancy. Positive means I am making journals and writing letters to my kids in case I don’t hit those milestones. It means I have travel plans with friends in upcoming years and we talk about them and they bring me joy. Positive also means that milestone days and holidays devastate me because I wonder if it is my last. Positive means that my husband and I have planned many little trips. Positive also means my husband is changing his work schedule to ensure we have more time together now. Positive means that sometimes I am so happy I cry. It also means some days I am so depressed that I cry.

God does not expect me to be happy all the time. People who tell you to not worry because God is in charge are either ignorant or mean. “How long, O Lord? I am helpless.” God understands our humanity. We need to allow ourselves and our neighbors to be human, too.

God is Bigger than the Boogie Man

I learned a lot of theology from Veggie Tales and this particular song has been on my mind today. Here in Illinois, it was a gorgeous, warm, sunny day. I spent most of the afternoon outside, working in the yard. Physically it was a great day, with fatigue being my only cancer side effect. Mentally, my spirits soared in the sunshine and fresh air. And yet… a check of my metastatic breast cancer social media groups this evening included several announcements of members who died and others entering hospice. And yet… the online newspaper I read is full of stories of poverty, crime, war and natural disasters. And yet… I learned that our friends lost their son in an accident yesterday.

Many people love to remind us that, “God has a plan.” When I hear that I think of a movie about Greek Mythology I watched as a teen where Zeus moved humans around on something that looked like chess board – changing their lives on a whim. I just cannot believe that the God I love is choosing who gets killed in an accident, who dies of cancer, who is born with a developmental disability, and so on. I believe that God is with us, helping us face our problems. God is bigger than the Boogie Man.

God did not give me cancer. God is not going to make this cancer disappear. But God has promised me eternal life, which gives me the courage to face stage four cancer. God is with me during treatments, procedures, and tests, calming my nerves and soothing my fears and helping me get through these things. God is bigger than all my problems.

Where is the Instruction Manual?

My main goal in life for over 20 years has been to be the best mom I can be for my kids. I visit about this goal with God every night. My oncologist knows how important they are to me and she always asks me about my kids. At my appointment last week, I think we talked about my kids more than my cancer. My Nurse Care Coordinator through my insurance company asked me to set a goal for myself when she met me. My instant response was to be as healthy as I can in order to enjoy life with my family. That goal has never changed. She has me repeat that goal at the end of every phone call and it energizes me.

The world is full of advice on how to raise kids of all ages. It is pretty simple to find advice on how to tell kids you have cancer. There aren’t many suggestions on how to keep parenting when you have stage 4 cancer. My kids were 21, 18 and 16 when I was diagnosed 19 months ago. They are absolutely incredible and are well past the stage of needing discipline, but they are dealing with huge life changes and decisions to make —- college, major, job, living away from home, etc. There is a lot of pressure on them anyway and now they also have to deal with my illness. I despise what cancer has done to them.

Cancer makes me less of a mom. I have physical limitations now so I cannot walk long distances or do much climbing. Nineteen months of treatments have made a mess of my digestive system so I cannot be far from a bathroom. My energy level is much less than it used to be. I battle anxiety and depression. My immune system is compromised so I wear a mask in public and haven’t been able to go anywhere with them in a long time due to COVID. All three of them are so helpful to me and simply wonderful human beings. They deserve to not be weighed down by a mom with a terminal illness and I would give ANYTHING to remove this burden from them. I’m still looking for that particular how-to parenting book.

Cancer Doesn’t Make Me Nice

Having metastatic breast cancer doesn’t make me constantly nice. I wish it did.

In the first few weeks after my diagnosis I was overwhelmed at the support I received from people – in real life and on social media. Despite all that kindness, there was a great deal of anger and jealousy inside me. I would see other moms at school events and feel so resentful that they were going to be around for years with their kids while I wasn’t. I would read social media posts where people complained about trivial issues and become irate. As I adjusted to my diagnosis and settled into the treatment plan, those emotions subsided enough for me to control them. I remind myself that I used to complain about things that don’t matter to me at all anymore. I remind myself that it isn’t another mom’s fault that she will be able to parent her kids for years when I won’t.

As more months passed I found myself resentful of anything non-essential that took up precious time. It made me impatient and unkind when people or circumstances wasted my time. Didn’t everyone understand that I need to make the most of each day? Around that time I read about a concept called the, “Ring Theory.” It was shared a lot on social media for a time. I discussed it with a social worker at my cancer center. It was developed by Susan Silk and Barry Goldman and you can research it to learn more. For me, it meant that I was in a circle by myself. Then I drew a larger ring around that and included my husband and children in it. The next ring included my mom. I kept drawing larger circles. The rings helped me prioritize people and my time. When talking to someone in a ring smaller than yours, the goal is to help. If you need to scream or cry or complain, do it to someone in a ring larger than yours. Visualizing that diagram helped me say “no” to things that involved people that were farther out. It helped me see that it was okay to stop people from giving unsolicited advice, because that is not helpful. I learned to avoid people who sucked energy from me. Prioritizing my immediate family does not always seem nice to other people, but it is the only way for me to navigate this disease and keep my sanity.

The fact that I still work full time means that I am not able to spend as much time as I would like with my husband, my three children, my mom, and my closest friends. My job as the controller of a small company means I am a one-person accounting, IT, and HR department. My position requires more than forty hours a week. My diagnosis has not changed that. By the time that I am done working for the day, I am usually too tired to do anything else except take a hot shower and settle on the couch or in bed. This makes me even more adamant about prioritizing my time. My goal is to always make time for my “inner circle.” Anything beyond that is optional. (I do know that working full time keeps my salary and health insurance, which also helps care for my inner circle.)

COVID-19 changed my personality. For starters, my oncologist put me on home isolation. She kept me informed of the latest scientific knowledge about the virus, which kept changing as more research was done. I was horrified at the amount of misinformation my social media friends were sharing about the virus. Then I was shocked when people who claimed they were praying for me and supporting me also vowed they would never wear a mask. Next came the social media friends who posted that only compromised people would be killed by the virus, as if I was a disposable part of society. I tried arguing, but eventually starting deleting people from my social media life. I wanted to scroll through social media to see photos of puppies and kittens, inappropriate humor, people bragging about their kids, great recipes, and anything that was encouraging and uplifting. I am a member of several FB groups for people with metastatic breast cancer and these people are my lifeline. I follow several religious organizations and devotions that are on social media. I did not want to scroll through so many things that caused me stress to find the things on social media that are helpful to me.

I firmly believe it is possible to be friends with someone in real life and not friends with them on social media. Maybe this comes from my age. I can remember life before the internet. The internet makes us brave in sharing opinions that we would not normally offer in person to people. The internet and the concept of “polite conversation” do not gel. Unfortunately when I started deleting people from my social media to help my mental and emotional well-being, it hurt people. While I regret that, I remind myself that I need to take care of myself so that I am strong enough to battle this cancer as long as I can.

The events of 2020 and 2021 have changed my personality. As I write this today, over half a million people in this county have perished from COVID-19. Racial injustice abounds. There was an attempted insurrection in January. White Christian nationalists make me hesitant to acclaim my Christianity without an asterisk. (No, really, I’m the kind that really believes we should love our neighbors and that God is not American.) Instead of scrolling on by when social media friends supported things I find appalling, I decided to delete them. I wish I was strong enough to keep scrolling by, to respectfully disagree. I used to be. But that is a quality terminal cancer has taken away. It is hard to explain. I guess I don’t have time to argue with anyone. The problem with this at the moment is that I do not have the chance to see people “in real life” due to the pandemic. So when I deleted people from my social media life, they also disappeared from my real life. I have been trying to make up for that via email and snail mail and good old-fashioned telephone conversations, but I realize I have lost some friends permanently. I’m sure that if I was able to be out and about and see people in person, I would be able to handle this in a kinder and more graceful manner. But I am stuck at home and am fighting anxiety and depression along with my cancer. There is only so much I can do right now.

So cancer did not make me a nice person. It did not make me blameless. Cancer has weakened me physically and emotionally. Pain and other symptoms make me irritable. Anxiety makes me irrational at times. Grief steals my focus and my ability to empathize. I am a work in progress so I pray I have more time to keep growing and learning. In this, I find commonalities with the pre-cancer me.