Stronger Than My Body

Two years ago today I had a scan whose results made me believe that I was essentially cancer free. Of course, oncologists are careful to use the word “remission” instead of “cured,” but to the average patient, remission feels like a sentence has been lifted. It seems like suddenly there are possibilities and futures that you worried were denied to you. For me, I began to lose the fear that had walked beside me ever since learning that what was thought to be a benign fibroid was actually a cancerous tumor with a worrisome prognosis. In retrospect, I wasn’t actually cancer free at all and my life was only going to get more difficult, but I remember that feeling of fear lifting away from me.

Ever since last Friday, I’ve had fear in the back of my head every moment I’ve been awake. The only exception was the hour I spent at Third Space Wellness working one-on-one with my amazing yoga instructor. During that time I felt strong, in the moment, and capable. I did Warrior 3 for the first time in possibly over two years. It was a supported Warrior 3 with blocks, but I did it and I felt so strong as I worked and concentrated on holding the position.

Afterward, once I’d caught and slowed my breath, my instructor asked how it was. “Fun. Really hard, but fun,” I said. After class I told her that it was the first hour in a week where I hadn’t been afraid. I almost cried while telling her that because I wasn’t sure I could explain what a gift that was. I think, from the hug that she gave me, that she understood.

In some ways, fear is familiar to me at this point. Most of the time I’m able to move past it and it’s not as constant a companion as one might expect. Common, yes, but not constant. However this past week, except for during that class, it’s been a constant companion. I’ve been able to sometimes push it down and it hasn’t kept me from laughing or finding joy and hope, but the fear has been a constant companion to every other emotion and moment. It’s caused me to sometimes break down and sob. The other morning I texted a friend who I knew was unlikely to be at work because I could not stop crying long enough to open a bottle of Ativan less than two feet away from me. I did eventually stop crying. I did find the courage to take the next right step and act like a functional adult rather than sit frozen in my bedroom.

I had a scan on Friday, December 29. That scan showed that my sarcomas have grown. It’s only a few millimeters per sarcoma, but any growth is bad. My doctor talked with my husband, sister, and me for about an hour, discussing my options. I tried to be a “proper” adult and take dutiful notes. I was determined to be strong and a “good” patient who takes control of her care. At one point Jarrod reached over and gently took my notebook and pen from me because I was crying too much to really see the page clearly.

We have a plan. To be completely accurate, we have two plans — a plan A and a plan B because plan A depends on what the radiation oncologists think. Plan A would involve me continuing to get Olaratumab (the wonder drug that has given me a great quality of life) in January, plus a week where I’d have four days of radiation with a day off in between each session. The sessions would be an hour long and intensely focused. After returning from our honeymoon, I’d go on a particular daily chemo pill. If radiation doesn’t agree, I’d go on that daily pill in January with hopefully enough time before leaving for Oceana to figure out and minimize all the side effects. Then, I’d take the pills with me to Australia and New Zealand and take them there, stopping them a few days before big energy days such as when we go trail riding in the Blue Mountains.

I’m grateful to still go on my honeymoon. I’m grateful to have the best doctors and to have incredibly supportive family and friends. I’m still hopeful that a miracle (or miraculous breakthrough) will happen. The pill works (keeps stable) about 40-50% of sarcoma patients for 4-5 months if I understood right. At the point where it stops working, I’d go on another treatment. One possible, though very rare side effect, is a hole developing in the lungs. The reason that happens (very very very rarely) is because for a few rare patients in that 40-50%, the drug actually shrinks the sarcomas. So, I’m focusing on that. Not the hole, but the teeny tiny possibility of shrinkage. Maybe this is how I get my miracle.

All that said, I’m scared. The day after the scan Jarrod and I had some friends over (if you’re local and didn’t get invited, it’s not personal, just assume that J and I flaked — we do that a lot lately). It was wonderful to spend most of the evening not thinking about the scan, but it was never far from my mind and even with multiple glasses of wine, fear never left me.

I’m afraid of not being able to be stabilized again. I’m also afraid of the treatments and their side effects. The past few months on Olaratumab have been incredible. I’ve had energy and regrown my eyebrows! I had started to think about Olaratumab as a long-term “new normal” and to be okay with treatment so often because the rest of the time I felt so good.

I’m scared, but I’m trying to be brave. I’m trying to remember that I really do just need to take the next right step. I have the best people and new discoveries are constantly being made. As we were leaving, I asked my doctor for reassurance that I shouldn’t give up hope. “I don’t see any reason not to have hope,” he said. He’s always been honest with me so if that brilliant doctor still has hope, so will I. No matter the odds, I can always choose to have hope. Like Supergirl, I believe in hope.

Crocheted Superbunnygirl and Flashbunny speeding across a chemo window
Superbunnygirl and Flashbunny from Hooked and Loopy

When I told my friend Cyana, she told me that I’m stronger than my body. Apparently it’s something she picked up from a 60-year-old ballerina. No matter what 2018 brings, I am choosing to believe Cyana. I am choosing to believe that I am stronger than my body. I can fight and find strength to endure treatments whether medications or radiation and all the side effects those may bring.

I am afraid, but I have hope. I have stage 4 sarcomas that are growing, but I am stronger than my body. I will have faith.

Death and Taxes

For anyone who believes the Senate and House bills that have passed and are headed for reconciliation are “merely” tax bills, and who think we pay too many taxes so you don’t want this stopped, I urge you to read about the many groups of people who will be harmed.

For starters, please read below about one group of people this so-called reform will directly and irrevocably harm, likely even kill. I’ve pulled the most pertinent paragraphs to make it as clear as possible, but included a link below so you can read the piece in its entirety.

“The Senate tax bill is expected to trigger a $25 billion annual cut to Medicare, the CBO estimated earlier this month.

The Medicare cuts aren’t part of the tax bill itself. Instead, they are mandatory spending cuts that would occur because of the tax bill’s $1.5 trillion increase to the deficit. These spending cuts are known as a sequester — and we know what happens to Medicare in a sequester, because it happened just a few years ago.”

“The last sequester in 2013 unexpectedly caused cancer clinics to turn away thousands of Medicare patients.”

“In that particular case, Congress had actually tried to shield Medicare from some of the deepest cuts. But because of some quirks in how Medicare pays for cancer drugs, it didn’t work — and clinics were left with incredibly difficult choices.”

“The Senate could pass separate legislation to skirt these rules that would require the automatic budget cuts — but as my colleague Tara Golshan notes, the politics of Republicans voting to undermine a deficit-management law won’t be easy.”
Source: Vox

I am lucky that I am not reliant on Medicare. When I was diagnosed I was employed by a large company with a strong insurance plan and, although I am far past the point where my job is protected, they have so far not fired me. However, if that were to change, because stage 4 terminal cancer is considered a disability, I would likely be eligible for, and need, Medicare.

This isn’t about me though. This is about the other patients who struggle and suffer through harsher treatments, only wanting to find a measure of wellness, who rely on Medicare.

Please explain to me why they should suffer so a tiny portion of Americans, most of whom are already wealthy and freeloading off the average American, can pay less in taxes. Please explain to me why, in a nation where Christians get riled up over people saying “Happy Holidays” instead of “Merry Christmas” this is considered acceptable?

This blood will not wash off the hands of Misters McConnell, Ryan, and those they claim to lead. Please don’t let it stain your hands through complacency. Please contact your representatives and senators to demand this be stopped. To make it easy, I’ve even included links to the contact search pages. If you hate talking on the phone, try ResistBot. If you need a script, 5calls.org has one. If you’ve already called, call again. If you’re not yet convinced why you should call, please let me know what might convince you.

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© 2007 Shawn CarpenterFlickr | CC-BY-SA | via Wylio

Dangerously Divine Is Perfect for a Dangerous World

There’s an old saying attributed to G.K. Chesterton:

Fairy tales do not tell children the dragons exist. Children already know that dragons exist. Fairy tales tell children the dragons can be killed.

Although I love the saying, in my head I always amend “or better yet, befriended” to the end of it. Two authors are mainly responsible for that — Patricia Wrede and Deborah Blake. I highly recommend both if you like strong heroines and magic. Patricia Wrede I first read as a kid, but still enjoy as an adult. Deborah Blake I wouldn’t recommend for kids unless you have mature readers. Both authors are on my short list of books I read when I need a reminder of how to find courage.

Deborah Blake is not only an incredible author, but a genuinely amazing person and friend. She was kind enough to send me an ARC of her newest book, “Dangerously Divine” which is now out for purchase today! Go buy it, I’ll wait.

gray cat with Dangerously Divine ARC
Toby approves of Deborah Blake.

You want more than just an imperative command from me to entice you to purchase a book? Fine, I guess I can understand that. So, let me tell you a bit about the book, the fictional world it’s a part of, and why I love it so much.

Dangerously Divine is the second book in Deborah’s Broken Rider series that are a continuation of her Baba Yagas series. You don’t have to read her Baba Yaga series to thoroughly enjoy her Broken Rider series, although I love that series as much as the Broken Rider series. I absolutely love Deborah’s take on the Baba Yaga myth that is the backbone to the shared world. It fits into my (admittedly not massive) understanding of Russian fairy tales, while still being fiercely feminist stories of strong women. The women in both series are strong, though imperfect. Their flaws make them more inspiring heroines. The men are also a far cry from too-perfect-to-be-true male characters, and thus more believable. Despite the magic, Deborah makes her heroines and heroes seem like actual people who could inhabit our real world.

Dangerously Divine focuses on Gregori Sun who is trying to discover a new path in life now that his old life has been taken from him. He needs to find both spiritual healing and a way to save his life. Although the cure I need is unlikely to come through magic, I can identify with Gregori. Like Gregori, I thought that I had a calling and something outside my control took that calling away from me. Like Gregori, I struggle not only with a physical ailment but with figuring out my path.

Gregori’s search takes him to a Buddhist monastery in Minneapolis that allows laypeople to live and study with the monks, so long as they follow certain rules. Unlike Gregori, I’m unlikely to try either Minnesota or any sort of monastery to figure out my path. While studying, Gregory meets Ciera, a librarian in Minneapolis who helps homeless and runaway teens for deeply personal reasons. Ciera is full of strength and courage that she has honed out of necessity and a desire to keep others from falling into the same traps that once caught her.

Reading about people overcoming unlikely odds and finding courage even when afraid, reminds me that such things are possible. Books like Dangerously Divine do more than entertain me or distract me from pain or frustration — they help me stay hopeful and continue to do all I can to fight my disease. I know that bad things exist, books like Deborah Blake’s remind me that bad things, no matter how big and bad, don’t have to win.

Courage and Confidence Aren’t Constant, and That’s Okay

Facebook memories are full of good, bad, and neutral images and posts from the past decade or so that I’ve been on that social media platform. Sometimes they stop me in my tracks, other times they help me move on. The first memory to pop up in today’s memories falls solidly in the second category.

Facebook status about how cat poop might help fight ovarian cancer. My post reads: Admittedly, I didn't have ovarian cancer, but part of me smiled at the idea that a parasite from cats might be the key to one cure for cancer.

Seeing this memory pop up in my FB feed made me smile and gave me hope after a night of horrible sleep, bad dreams, and worst-case-scenario worries.

People tell me that I have a great attitude about all of this (pulmonary embolism, stage iv sarcomas, etc), which is true, sort of. People tell me that I display courage and confidence, grace and humor — but that’s just what gets shown most often to the public.

I don’t always have a positive attitude, tons of confidence, courage for the upcoming twists in the road, and a good sense of humor. I think I do have grace though, even if not in the way that we often think of one acting gracefully.

I have grace in that I’m blessed with a husband who responds to my 6 a.m. panicked searching for ativan by waking up and finding it for me, along with the other meds that help my brain calm down. That he does this despite getting very little sleep himself due to waking up throughout the night both when I woke up or whenever my breathing sounded odd, makes him even more of a hero. That same husband then made me breakfast with delicious coffee made with beans from our favorite coffee shop (Kefa Cafe) that reminds me of the great world outside our apartment full of our community that supports us in love. I also received a text from my friend and former fencing coach with a cute cat that made me laugh and smile. And all of these things together made it possible for me to get out of bed, throw a load of laundry in the washer, and attempt to do what I can with this day.

It’s not going to be a perfect day. I’m due for another Lovenox shot in my belly in 5 hours or so and that’ll sting and make me tear up, but it’ll be given to me by a kind friend who never ceases to make me smile and find courage.

I don’t always need a lot of courage, just enough to take the next right step, even if that’s sometimes curling up with a glass of chocolate milk and a good book. Today it’ll involve some time in prayer and then calling my senators to again stress my opposition to S. 720. S. 720 is a bill that infringes on free speech rights by potentially making it illegal for individuals, churches, and businesses (many of whom already participate) to participate in the Boycott, Divestment, and Sanctions movement.

Whether or not one agrees with supporting apartheid-like conditions and settlements that the international community has agreed are illegal, surely we can all agree that criminalizing boycotts is highly un-American. Unfortunately, one of my senators, Ben Cardin, didn’t seem to have read the bill that a lobbying group gave him before he sponsored it, based on his comments so far to the press. He’s said that he wants to “reword” the bill, but I want him to revoke his support. If you’re in favor of maintaining free speech rights in the United States, regardless of your views on Israel, please contact your senators to voice your opposition to S. 720. The ACLU has a great primer on the bill in regards to free speech. If you don’t trust the ACLU, Mondoweiss has a summary of positions from groups including Jewish Voices for Peace and J Street.

It’ll take some spoons and some courage to make those calls, but I believe it’s the next right thing I can do that will contribute to peace and goodness in the world. I can’t control cancer research. I can make sure my senator knows I’m paying attention and disagree with him on this issue.