Reflection on Having Stage IV Cancer

I have stage IV leiomyosarcoma. I was diagnosed in October of 2019. It was likely that I had it in 2015 when I had a hysterectomy with a large benign (so they thought) tumor removed. I wasn’t given a lot of hope back in 2019. My first chemo cocktail nearly killed me because my then oncologist was not listening to my side effects…and I was having a rare allergic reaction to one of the chemicals they were pumping into my body. I lost my hair….my golden glow I always had turned a sickly grayish-yellow. I was put on high dose steroids for 5 weeks. I gained almost 30 pounds during that time. All those 0500 gym and kickboxing classes that I had worked so hard in – all that work to tone my body and keep it healthy – went out the window. Then the next chemo in the regimen to try and buy me time. They were quite clear there would be no cure. Aside from a freak accident, this cancer would eventually kill me….even though the cancer never really gave me any signs and symptoms….the treatment was what was so awful. My second chemo gave me chemical burns along my bra line that even made my oncologist flinch. My hands and feet were red and blistered. I kept walking during this time (now that I could breathe again) – with socks under my bra straps around my chest because the pain was so horrible. I had second skin gel patches between my toes with band aids to keep them in place. I was still on steroids around chemo time (as most cancer patients are) to help with the nausea and the exhaustion. Funny enough, I always got so much done those first 48 hours after chemo because the steroids wouldn’t let me sleep…and they kept me feeling like I was always hungry. After a year on this second chemo, my sarcoma specialist told me my body needed a chemo break. I had been on chemo for over 15 months at that point and the second kind of chemo I had been on had kept things stable but it would eventually weaken my heart and we needed to stop it before that happened. I suggested aromatase inhibitors (I had my tumor slides they had stored at the hospital tested to see if it was estrogen positive and progesterone positive. It was highly positive for both…meaning it was feeding off of my female hormones…so we cut them out of my body. I started getting shots monthly to kill my ovary (I only had one left – encased in an inoperable tumor) and any other female hormone creating entity in my body. I then started the little devil pills. It was amazing at how much havoc this tiny white pill I took once a day could cause to my body. My body hurt so badly. I would stiffen up after sitting for just a minute or two. Someone whom I love dearly told me that I should be so happy to be off chemo…but I was much worse off at this point. My body had rebelled against me and at age 50, I felt like 90. I have since met people who have tried the pill I am on and they lasted less than a month before calling it quits. I had helpful friends who had suggestions of mega doses of vitamin C….red ultraviolet light therapy…cutting all sugar from my diet. Funny how they assumed they had the answers…that I had not done my homework on my own kind of cancer…one that is rare and not well understood. I was given 17-23% chance to live 5 years. I found a helpful supplement (natural with no side effects) that dropped the pain level down 85%. It was a game changer for me. I watched as friend after friend on my online LMS group died. Many younger than me. We had a group of four of us women from all over who were diagnosed about the same time. There are two of us left in that group now. The youngest of us didn’t make it.

When my Joe died in 2022, I railed. I would have no matter what my life circumstance was…I was a mother who had lost her child. I will never get over that. Ever. How can you expect me to? But most of all I was furious with God. I was ready to go. I had been facing my own mortality for 3 years at that point and had finally dug myself out of a deep depression and grief what I wouldn’t have for my own life. I was living goal to goal at that point…make it to 50…make it to Joe and Michelle’s wedding…make it to this trip….make it to Lily’s high school graduation…make it to see Tim be on the courts of a D1 college basketball team, living his dream. Why would God take my son, who was just hitting his sweet spot in his life, away and not me? Joe has been dead for over 4 years now. I stopped being mad about 6 months ago. It didn’t matter what people said to me, I was mad. He deserved to live and I was okay with giving my life up instead of his. I would do it in a second…for any of my kids. Most moms would. Another deep depression and grief that covered me completely ensued. I don’t think very many people in my life knew the depths of that depression and the length of it. Other moms who had lost their kid or kids became my circle. Most people I still had around after the cancer diagnosis, those I must be cursed when Joe died. They just stepped away like my bad luck was contagious. I let them. Then I got mad. Mad at the people who failed to speak a word to me when I needed them most. We moved to Montana and that was a good time to make a culling of the “friends” who expected me to carry on the communication. I started over and carried over those who reached out. It was never the people I thought it would be…it rarely is, come to find out. I threw myself into creating a life in Montana – in a home I love with the people I chose to spend time with. I became a homebody not because COVID or cancer forced me to, but because it is my safe haven. I don’t go out much, and that is hard because I am married to someone who is a social butterfly and needs to be out and about amongst people. Thankfully, he has started doing things out on his own and doesn’t force me to be in large settings anymore. I never know when something will trigger me and I will lose it. I prefer to do that in private and not with a bunch of business people at a chamber of commerce event. This is not at all who I used to be. It is my reality now, and Rich is trying to respect that (or he has given up on me – I haven’t really asked him.) I attend cancer support groups online every other week (where it is uncomfortable for everyone to talk about my grief for the loss of my Joe) and then I am in a mother’s child loss group every other week (where I feel I can’t talk about my cancer diagnosis because some of them lost their adult children to cancer and it is triggering). It is a freaking fine line that I walk in these groups and it is hard.

The reason I decided to type this (now that I am a couple of long paragraphs in already) is because I had a particularly cathartic meeting with my metastatic cancer group this past week. Due to confidentiality issues, I am just going to do some broad strokes as to what was talked about. None of the guys showed up…it was just 5 ladies from all over Montana – ages 50-65 would be my guess. We ran the gambit of topics. We talked about tragic optimism (“the ability to maintain hope and find purpose despite inescapable pain, loss, and hardship.”). None of us will be getting better. We all have side effects from surgeries, the cancer itself, treatment, etc., and our new “normal” isn’t what our old normal was. We can’t walk back time and have the same bodies we had before…have the same thoughts…even the same dreams. We can have hope…but hope looks different. Hope isn’t a cure or a toned and sculpted tight body. Hope is being able to go on a long walk and not have to take a nap afterwards. Hope for me is getting to continue being an EMT and firefighter to serve my community and my department. Unrealistic hope leads to despair. Toxic positivity (either from myself or usually from others) leads to that tragic optimism.

I have had a lot of alone time lately. Rich has been gone two of the last three weeks traveling and spending time with his side of the family. I have been thinking alot about about facing my own pride and vanity. As recently as 6.5 years ago, I was working out 5 days a week and was in pretty good shape. I was toned and tan and had naturally light blonde hair. Cancer and the chemo therapy I was on those first 15 months changed all of that. I gained weight. I lost all my hair and it came back in a strange brownish color with red highlights. My weight ballooned and my entire body became something I couldn’t recognize as my own. The sisterhood of body shaming hit me hard. I felt that no matter what kind of person I was on the inside or projected, I was seen as a fat slob by everyone. We talked and all of us cried over this in my cancer zoon this week. We had all been so active before our treatment took our bodies and our lives and turned them pearshaped. (literally). We all talked about how we had once been fit and active and now we were being looked at in public as fatties – with no one knowing that it was due in good part to our treatment. No one cares why you are fat. There was a young man I met at our fire department who really body shamed me. He never came out directly and said anything to my face, but really made me feel worthless for a long time…until I was on a medical call and was doing all the things I needed to be doing to help. He, along with my own discouraging inner voice, was robbing me of my power and purpose. I have people around me who are taking these weight-loss shots and dropping huge amounts of weight quickly. There are people close to me who gossip about other people’s weight when they aren’t around, so I know in my heart of hearts, they are gossiping about mine. That is hard, because these are some of the people I am closest to. Don’t you think I would like to have a body like I used to ? I would. My oncologist (who is a wisp of a woman) told me the first time I met her that the drugs I am on will really prevent me from losing weight…no matter what I do.

I am writing this out so I can read it again when I need to. My body is a survivor. I saw a meme the other day (and I hope you don’t get these memes, but thanks to having cancer and being a part of cancer groups, I see these) – “I don’t care how I look in photos anymore. I just want to look good in ultrasounds, CT scans, and MRIs.” AMEN! Those are what matters right now. I am tired of hiding outside of photos anymore because of how I look. I would hope that someday my kids would like to see photos of me in my last years…no matter what I look like, just because maybe they want to see my smile…or simply because they loved me for who I was, fat and all. I am trying to take a healthier approach mentally right now, which is where I think I need the most work. I don’t know how much longer I have. I am already living on borrowed, blessed time. Why should I turn down things I love to eat? Eating it won’t kill me and dieting won’t save me. So if you see me out in public eating a cookie. Slow your roll. I am getting joy in something. Don’t judge me and don’t steal my joy. People who suck the joy out of my life are quickly cut from my tightening tribe. It is amazing when you don’t have a whole life time to live, what you are willing to cut from your life if it doesn’t bring you joy and isn’t worth the hassle. I have been taught by my family…by the public…my whole life that looks matter. I totally bought into that for the first 45 years of my life. Now I am in a different position and I am trying to relearn how to love myself in this new body that I don’t love. I will start with what I do love. I love that this body has been fighting for almost 7 years now. I love that it keeps me healthy enough to be a part of a higher calling as a firefighter and EMT. I love that my mind is still sharp (although I sometimes struggle with words when speaking – thank you chemo and grief brain). I am thankful that although I carry a large tumor load around with me – most people who meet me would not have any idea I have terminal cancer. They treat me like everyone else and I appreciate that.

Well, that is a lot of words to say that I am 55 and still learning. I am trying to live a good and full life and not beat myself up for what I can’t do or what I look like. I am still here. I am fighting to stay as long as I can and live a productive life for as long as I can. I am crushing it so far. If you are still reading…thanks for listening to me ramble about something I think about ALL THE TIME. Blessings to you all…and I hope YOU are in a good place. I am still working on it. I am a total work in progress.