All The Fears

I went for a walk this morning. Indoors on a treadmill, intended only to be a short one-mile walk, but more than I have been doing lately. The heatwave kind of killed my intentions to walk 8 miles a week.

I ended up doing almost two and a half miles today, even jogging for a few short segments because it felt good to move and focus on the air going in and out of my lungs, on moving, doing something, even if it was as nebulous as exercising to improve my lung function as those lungs fill up with tiny sarcomas.

See, I have a scan tomorrow and I get the results on Friday. I’ve been telling myself that it’s okay that I don’t get the results right away. It’ll mean that they have more time to come up with a definite plan before seeing me. That’s true enough, but to be honest, I hate the idea of waiting 24 hours between my scan and my appointment. It was the result of some screwed-up scheduling, a strange aberration since Hopkins otherwise has been great about making sure I see a doctor to hear my results and view slices of my scan the same day.

I remember before I knew that the cancer was back. I asked a friend who had gone through cancer and was in remission if she ever stopped being afraid of her scans and what they might show. She told me that she was still afraid of her scans and thought she always would be. It helped, knowing that I wasn’t the only scaredy-cat.

I am scared of a lot. I’m scared the chemo pills, alternating between 3 and 4 pills daily, haven’t been enough. I worry that maybe if I’d been stronger I could have taken 4 pills every single day and maybe that would have been enough to stabilize my sarcomas. They weren’t stable at my last scan — I can’t imagine that they’re stable now.

And of course I’m afraid of what the new treatment will entail. I already have so many days when I have a headache because of my meds or go to sleep absurdly early. Yesterday I was bound and determined to go to the July meeting of the Unofficial Handlettering Society of Silver Spring. I napped beforehand and picked out what I’d wear so I wouldn’t get nervous at going out and being social. I was excited to play with watercolors and learn from the far more talented attendees.

Then, less than an hour before I needed to head out, I got so horrifically and intensely nauseous¬†that I needed to take one of my prescription anti-nausea drugs. It helped, but I still felt queasy¬†enough that leaving the apartment was out of the question. I read and wrote and it was ultimately not a bad evening, despite my stomach feeling uneasy, but it wasn’t the evening I had planned. I haven’t made it to a damn handlettering evening in so many months I’ve lost count. If I can’t go when I’m only on chemo pills, how likely is it that I’ll make it when I’m on infusions and/or radiation?

I hate not living the life I want to live. I know how spoiled that sounds. A lot of people aren’t living the life they want to live. For many of them, they’re like me, and the reasons are completely out of their control. All the same, I’m afraid of losing more of what I enjoy.

Monday was good. Despite a nap and not getting done everything I meant to do, I got to the zoo with my husband and then we went to pub quiz with friends from church. Our team even managed to somehow win! I’m afraid of losing those evenings and not feeling well enough to attend those on even an irregular basis.

This red panda seemed to have no fears whatsoever as she wandered around her exhibit and cooled off in her little air conditioned house.

I’m afraid of my cancer leading me to not be as involved politically as I’d like. I’m afraid of a time when my cancer might keep me from advocating for the issues I care about and raising holy hell against those who want to control women, take away the ACA, or treat immigrants and asylum seekers like criminals. For goodness sake, we have a government that doesn’t know how to reunite parents with the children our officials and agents tore from their arms! I don’t want to waste time being afraid of my own body when I’m afraid of and angry at our government and at those citizens who support such heinous actions through willful ignorance and both open and denied racism.

So many people have so many more reasons to be afraid than I do. It feels selfish to be afraid, but I am. I’m afraid and doing all I can to work through that fear and stay standing and ready to fight. I don’t know if that’s perseverance, grit, hope, or some combination. Maybe it’s faith in the face of fear. I don’t know what the outcome will be, but I have faith that somehow I’ll face it — no matter how afraid I am.

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.