I saw my lead oncologist today to learn the results of yesterday’s scan, as well as what the next steps are.
TL;DR We have a plan, the results are a bit unknown, but it’s got a chance better than that of the proverbial hellish snowball, so I’m hopeful.
So, the scan showed some mixed results. Some tumors grew slowly or were stable, a few grew relatively a lot. Like tripled in size if I understand the math right. That’s kind of crappy. However! There are things we can do!
The very first thing that we’ll do is that I’ll start taking a blood pressure medication that has been shown, when taken alongside other cancer medications, to be helpful in restricting growth of sarcomas. Restricting growth is good. Essentially it somehow makes it harder for the sarcoma to grow blood vessels and get enough blood to grow. It can have some side effects so I’m supposed to be vigilant about actually using my asthma inhaler and letting my oncologist know if I start to have any trouble breathing and/or I feel like I’m breathing through soup (you know, when it’s not crazy insanely muggy out). That’s propranolol — Jarrod and I are both amused that it ends in lol.
The second thing is likely more stereotactic radiation on the biggest tumor. I’ll learn more about that Tuesday.
The third is that in three to five weeks, I’ll stop taking my chemo pills and start on Keytruda infusions once a week every three weeks. There are some possible serious side effects, but nausea and fatigue aren’t likely, so that’s kind of cool. There’s not a lot of evidence for how sarcomas respond to Keytruda. We need more research.
The studies that have been done have had very few people, but at least a few people have had a complete response and gone into remission. So, remission is still Highly Unlikely, but it’s possible and possible is a very good thing.
Kind of like finding peace and beauty at a hospital.
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.
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.
I was tagged awhile ago in the 7 books in 7 days thing on Facebook. I couldn’t decide between two favorites for my first book, so I’m counting a series as one book for the purposes of the Facebook challenge.
Also, I’m ignoring the no explanation part because I always want to know why someone loves a book or a series. That is what led to this blog post.
Young Miles and Cordelia’s Honor are both part of the Vorkosigan Saga by Lois McMaster Bujold. Dad introduced me to the series that he and my sister both read. I then introduced Jarrod to it and he tore through them while we were dating. The books range from sweeping space operas through futuristic Regency style romances and into backwoods mysteries.
Young Miles was the book I chose as the subject for my college entrance essay on an important book in my life. In retrospect, I’m impressed both that neither of my parents tried to get me to write about a more traditional “Important” tome, also that Dr. Colella didn’t say anything odd about an applicant to his brand new honors program writing about a genre space opera-style book. I wonder if the old computer I wrote it on still turns on or if there’s a copy in the old house anywhere. It was probably a super pompous essay, though I remember pouring my idealistic young heart into it. I also wonder where my copy went. I lost it years ago and assumed Dad had it, but I haven’t come across it in his books yet.
Cordelia’s Honor is home to some of my favorite quotes about challenges and life. One particular quote was important to me pre-cancer and helped me embrace the heart-wrench of seeing fosters move to new homes after I’d helped them. The quote has become only more dear as I’ve undergone treatments and side effects that can range from uncomfortable to tear-inducing (and as I’ve gotten more neighborly with my own mortality) is:
“Being dead is quite painless. Pain, like time, is going to come on regardless. Question is, what glorious moments can you win from life in addition to the pain?”
Glory can be holding my baby niece, hearing my nephew laugh, finishing a 5k to raise money to help others with cancer (plus myself), writing advocacy letters with friends, visiting lawmakers to advocate for young adult cancer patients, making someone I love smile, holding Jarrod’s hand, and even simply realizing what I’ve survived. Those are the glorious moments for which I’ll undergo pain, if not gladly or stoically, at least repeatedly and with hope.
There years ago Jarrod came with me to what we believed was a routine post-surgical follow up appointment.
It wasn’t routine. My surgeon gently informed me that the mass they had removed was not a benign fibroid, but a cancerous growth.
I remember his words mushing together into the background roar you hear standing near the ocean. I tried to take notes, but I couldn’t focus. They had sent the mass to another lab for a second opinion, but I needed to see an oncologist soon.
I remember thinking my doctor looked so sad, and being grateful for the shared emotion.
The day is fragmented in my memory. I have a memory of literally calling Laura from the parking garage. I texted Tiffany that I’d be late coming back online to work and she kindly told me to take all the time I needed. We made an appointment with an oncologist before we had gone a block. I texted Jennifer Gerres because she was from SAA, knew what cancer was like, and would help me. That’s what I remember thinking, SAA girls are there for each other. I asked Dad if we could do a conference call with Mom, as I didn’t think I could tell her alone without collapsing into tears. It was a surreal conference call. Quinn helped in ways that I honestly believe are why I found my way to Hopkins and am alive today.
Then we knew we needed our friends because we were scared and friends are how you cope with huge monsters. Buffy was always more fierce when she embraced her friends.
So, in the age of social media we reached out via Facebook. Friends showed up and embraced us and cheered us and assured us we were not alone.
I will always be grateful for that night. It has powered me through these years in ways for which I cannot find words.
Thank you to everyone who has been with us, in person and online, and helping us to fight and stay as sane as possible.
We love you and we thank you.
Anyone who thinks friendship isn’t magic hasn’t fought cancer in Silver Spring.
Last week’s scan was mixed good news and bad news. My feelings, needless to say (I hope needless), are complicated and a mix of happy, anger, frustration, sadness, and hope. Writing this was not easy so I decided to express myself via gifs. Because a good gif is never wrong.
Let’s go with the good news first. The radiation helped!
The team aimed at my two largest tumors. They first targeted one in my lungs, then one in my abdomen. The irradiated tumor in my lungs noticeably shrunk. That’s awesome. The other one is at least stable and might still shrink by the time I have my next scan. Radiation can take awhile to see the full effects. In addition, some of my sarcomas are stable and don’t seem to have grown. Stable with tumors, like with mental health, is a good thing. For someone with aggressive stage 4 cancer? It’s a very good thing.
The not-so-good news? Some grew and an additional sarcoma has shown up.
Yes, I’m angry about this. I’m pretty sure anger is normal though.
So, what does this all mean? Well, in the short term it means that I’m sticking with the same chemo pill until my next scan in July. We are playing with the dose to try to mitigate some of the side effects. It’s not cool to lose 48 hours or so to uncontrollable projectile nausea every 2 weeks. I did ask my doctor about going to one of my local dispensaries. He’s not opposed to the idea, but because the hospital receives federal funding, he can’t prescribe it himself without putting that funding in jeopardy. So, the workaround for a government terrified of pot due to the GOP and uninformed lobbyists is that I go to the dispensary myself and ask about local doctors with whom they work, then see one of those doctors, present my case history, and I’ll likely walk out with a prescription for medical marijuana.
No, you’re not the only one thinking this is really dumb and a waste of medical resources and my own spoons. We need to get our federal government to realize that pot is not something to be feared (especially prescription pot, i.e. doctor-supervised!) just because we have had a terrible “war on drugs” for so long. Like, wouldn’t it be better if it were my main oncologist prescribing the pot, not some random doctor I’m establishing appointments and a relationship with solely for the purpose of reducing my nausea in a way that might have fewer side effects than the next step up in anti-nausea pharmaceuticals? You’d think so.
So where does that leave me? Well, we talked about what my likely treatment options will be in July if there’s more growth. For now though, I’m just living with some hope, some sadness, a great deal of gratitude for my cat (purring alongside me while I type this), and a huge appreciation of how helpful books and television are for avoiding reality.
Sometimes going through email can lead to more than simply the satisfaction of tackling an item on my to-do list. In the course of celebrating the birth of my niece, being violently ill last week from my meds, trying to fit in last minute prep walks for the 5k, and then actually completing the 5k — life got a little busy. So I decided to tackle my emails this morning.
I came across a Richard Rohr Meditations email. It included a poem by Rainer Maria Rilke, translated by Joanna Macy and Anita Barrows from the original German. He suggested reading it aloud slowly and musically. I tried that, quietly but otherwise following his directions, and something in it spoke to me.
God speaks to each of us as he makes us,
then walks with us silently out of the night.
These are the words we dimly hear:
You, sent out beyond your recall,
go to the limits of your longing.
Flare up like flame
and make big shadows I can move in.
Let everything happen to you: beauty and terror.
Just keep going. No feeling is final.
Don’t let yourself lose me.
Nearby is the country they call life.
You will know it by its seriousness.
Give me your hand.
I don’t know if I flare up like a flame or embody God. While I do try, much of the time at least, to act as a part of God, there are plenty of times when my humanity asserts itself. Sometimes it’s in selfish behavior, but other times it’s me protecting my human self or simply not being able to do what might be defined as good and godly.
I’m not God. I need to have protective behaviors and I need to have boundaries and barriers to protect my sanity and my health. I do not have infinite patience or strength. I may be filled with God’s love and generally try to live in that love and show it to others, but I am human and also need to receive the love of my friends and family. I need love to continue each day, moving forward into the unknown, and living in the vivid uncertainty that is living with stage 4 aggressive rare cancer. Thankfully I have wonderful people who love me and help me keep going.
Three lines stood out to me and have stuck in my head all day. My thoughts on those lines aren’t long or profound, but I’ll share them in case they’re of help to anyone else struggling with the coexistence of beauty and terror in their life.
Let everything happen to you: beauty and terror.
Just keep going. No feeling is final.
Don’t let yourself lose me.
My team was literally the last to cross the finish line at the 5k on Sunday, but we finished. Two members of the team had crossed that line earlier. They greeted us with water bottles and advice on the best bagels. I was surrounded by hopeful love. That was beauty.
I have a scan tomorrow. I’ll learn the results a few hours after the scan and then discuss the new plan on Friday. That is terror.
I don’t know what the scan will show or what the new plan will be and I doubt that will ever not terrify me. I’m starting to be okay with that though. I have terror, but I also have beauty. Both will always be in my life, regardless of how long or short that life might end up being. I need to simply just keep going and do my best to not lose my faith in the midst of either beauty or terror.
It’s been almost two years. It feels like yesterday. It feels like forever ago. I remember getting up from my desk chair, suddenly knowing there was a horrible reason that Mom was calling. I remember almost falling down to the ground, sliding against the ottoman, crying, wailing with a sound that made Toby run out of the room in fear. I remember trying to be strong, trying to channel Dad himself who would have been taking care of people. I remember Jarrod holding me, while trying to help that impulse to help. I kept freezing up though, because my brain would start insisting that nope, no, no, no, no, no, nope, this wasn’t real, this wasn’t real. Dad was going to magically be okay. Miracles could happen. If Lazarus could be awoken, so could Dad.
It was the worst day of my life. Still is. It’s worse than any bad cancer news — this knowledge that I can’t call Dad on a bad day or share good news or a joke with him. I can’t ask him for help or make him laugh. Not in the way that I want. I know, there are beliefs about taking time to sit with the spirits of the dead and I believe that my dad is in Heaven and that Heaven must involve laughter. I believe that my dad isn’t really gone, so long as I remember his lessons and his love. All the same, there aren’t any telephones to Heaven in my belief system where I can hear Dad’s voice and his perfect laughter that I could pick out of a crowd from a young age.
After Dad died, even when my cancer came back, coping with the emotional aspects of cancer seemed less important than trying to deal with my grief. I had made a fair amount of progress coping by the time that radiation started. During that first long stint of radiation, my grief got shelved as though my soul knew that I couldn’t cope with that emotional pain when I just needed to keep putting one foot in front of the other. It meant though that it was waiting, still fresh somehow, when I finished that radiation.
Losing my dad still feels worse than cancer. I miss him, horribly, awfully, and more often than it probably seems. Most of the time I cope with it pretty well according to my therapist. May is tough though. I’ve been avoiding thinking about how to spend the anniversary of his death. It’s been easier to lose myself in great novellas and novels, to push myself to walk 3.2 miles even when my irradiated and chemo-pilled body does not want to do so. It’s easier to cry because I’ve pushed my muscles too much, than because I let myself think about Dad’s death.
I’m still not sure how I’m going to spend the anniversary. I’ve scheduled acupuncture because it helps, and, of all weird selfish things, a haircut. It’s not so much because a scalp massage seems good as that Dad was comically bad at noticing haircuts. So it somehow made a weird kind of sense to me when that was literally the only day my stylist was available before this year’s Stride & Thrive when I’d really like to not have a ducktail.
Maybe I’ll reread a cancer memoir he gave me that a coworker had recommended to him. Maybe I’ll force myself on a hike that morning to try to spur endorphin production. I remember him picking me up and carrying me on hikes as a small child after I’d inevitably tripped and skinned at least one knee. Maybe I’ll binge watch Star Trek or Buffy, or reread Bujold books because those were something special we shared that have helped make me a better person. He did once tell me, “release your inner slayer…” Maybe I’ll ask my neighbors if I can hold their baby because Dad was fantastic with babies and I really don’t want to intrude on my sister and brother-in-law. Maybe we’ll get Mexican carryout, just Jarrod and me so that he’s the only one to see me sob, or maybe we’ll see if friends are available to share margaritas because Dad told me that he was comforted during my cancer because he knew I had the most valuable of treasures — a strong group of friends.
I don’t know. I miss him. I fear that I’m not doing enough to be worthy of being his daughter — that I’m not living up to his memory or being the strong, kind, brave woman he believed I could be. I know I’m lucky though, to have had him as my dad. My friend Rachel told me, after her aunt recalled a happy memory of once meeting him when we spent time together in DC, that he “was the kind of man who made lasting impressions on people he met only briefly,” and she’s right. I wish that more people could have met and known him while he was alive, because he really was fantastic not just as a dad, but as a person. He was kind, and had a good sense of humor. He was generous and fair-minded, but strong enough to be open to change. He believed in equality for all people, and told me that he considered himself a feminist. Leonard Nimoy was one of his heroes. He was deeply religious, but also respected others for their wide variety of beliefs. He often told me that he thought God was either laughing or crying at all the divisions we drew between ourselves.
There’s a quote from my dad that I have as part of a collection of quotes on my desk, sitting right above my laptop screen as I write this. He’s where I think I got my optimism, part of why my stubborn streak refuses to give up hope for more than a day, even when things look bleakest. Seeing his quote reminds me to never give up, because ninth inning rallies are always possible.
I have always found optimism to be a healthy antidote to much of what happens in life. I always think that something nice is just around the corner… and every once in a while, just often enough to keep me going, there is.
“That sounds like the worst superpower ever!” –my sister making me laugh after I told her how tired radiation had made me, unlike its effects in comic books.
I’m done with radiation, for now at least. I’m already impatient with myself for not recovering faster. Even though intellectually I know that the dosage of radiation was way higher than the last time I did radiation, so therefore the fatigue is still expected despite fewer sessions of radiation overall — my spirit doesn’t seem to know that.
Yeah, that’s currently me. I had my last session on Tuesday. The nurses and techs at Johns Hopkins Sibley Memorial were amazing — kind, skilled, and understanding. They even gave me a certificate of completion with friendly notes from the nurses most involved in my care. It made a very tired Bethany smile.
I am incredibly grateful to my sister for asking for help for Jarrod and me, and to the friends who took time out of their days to help. Aside from how expensive it would have been to hire a car to take me to and from Sibley on the days when Jarrod had his own appointments elsewhere, as I told a friend, I’m okay falling asleep in a friend’s car or asking a friend to stop their car so I can throw up, but the idea of doing either of those in a Lyft weirdly freaks me out.
I’m still exhausted from the radiation/chemo pill combo. Plus, I’m having trouble sleeping again (yes, I’m doing everything I’m supposed to, including drinking warm nutmeg/vanilla milk). So, that’s not fun. I’m still trying to regain strength and endurance so I can do the 5K part of the Stride & Thrive to raise money to research and treat gynecologic cancers.
a cappuccino or latte costs around $5 with a kind tip to the hardworking (hopefully not super racist) barista
a glass of wine out with your friends costs $10 with a similar kind tip to the also hardworking waiter
many people get at least more than one of these (or similar delights) each week
I’ve had 188 views of my blog this month, as of the writing of this post, even though I’ve only published one post in April prior to this one. Let’s pretend that this post will have similar stats.
54 people have donated so far to the fundraiser
Let’s assume that we’ll have 105 unique viewers and that those include all 54 people who have thus far donated. That leaves 51 people. Let’s round that down to 50 to make things easier.
If half of those readers (25) give up one glass of wine (10) and half (25) give up one coffee (5), we’ll raise $375 to help research and treat women with terribly underfunded gynecologic cancers. If half of you readers give up both one wine and one coffee ($375), and just under a quarter (12) give up one wine (10), while the rest (13) give up one coffee (5), we’ll have raised $560! That’s kind of amazing to me!
If you can’t donate now, I do understand. I simply ask that you at least read the common signs and symptoms of gynecologic cancers at the Below the Beltway Penguins page, then share with at least one friend. You never know whose life you might save.
In the Meantime
I’m going to do my best to be worthy of your donations. I lost a lot of endurance and energy during radiation. Pre-radiation, I was able to partially run, partially fast walk a 5k in under an hour. I think my record was 50 minutes though I felt like death afterward. On Wednesday I barely completed a 0.77 mile walk in 20 minutes and felt utterly exhausted by it. Yesterday, I did two 0.7 walks, one in 16 minutes and one in 18 minutes. The 18 minute one included a flight of stairs, but I didn’t feel like death after either walk. I’m hoping to balance patience with pushing myself. As the saying from the Bible goes, “the spirit is willing, but the flesh is weak.”
My spirit is willing and stubbornly determined. It’s also deeply scared about whether or not the radiation worked on my two largest sarcomas. I learn that in about a month. I’m also scared of whether temporarily halving my chemo pill dose allowed the other tumors to grow. Ironically (maybe?) I’m scared of increasing my chemo pill dose back up to its pre-radiation levels. I’m scared of a lot. However, I believe that my spirit can and will help my body recover as quickly as it can and to (slowly) complete that 5K so that I’m worthy of every single donation that has been made. I am amazed that we have raised so much already. It seems surreal that so many people have been so kind and generous. That helps me have courage and it helps me force this tired body to try, but also to allow it the rest that it needs so that I can fight again another day.
Let’s keep fighting. It’s the only way we can win.
I’m restarting radiation today so Toby’s pose here is particularly apt. On the one hand, he’s adorable and, I believe, knows that his adorableness calms me. On the other hand, my fear and anxiety mean that a not small part of me wants to imitate him and curl up into a ball.
It’s more focused radiation and fewer sessions this time around. That should mean fewer side effects than last time. However, last time I wasn’t taking chemo pills so I wasn’t already struggling to fight fatigue and do everything I want/need to do.
It’s disturbing to know that beams of stereotactic radiation will be aimed at two spots on my body to try and permanently stabilize my two largest clumps of mutated, out-of-control, turncoat cells. That one of those beams will be aimed at my lungs simply adds to my unease.
However, I trust and like my team of oncologists. I have a fluffy cat who seems to want to comfort me. I have a husband, sister, and friends who are helping me take the next right step, even when it’s hard and scary.
I refuse to give into my cancer. I refuse to believe that stage iv sarcomas won’t be defeated by medical advances and pure stubbornness. So, I must refuse to give into fear. It’s as simple as that, no matter how much I want to imitate my cat.
I’ve been trying to be really good with my training. Even when I’ve had to repeat C25K runs, I’ve made a point of each time I go out making it to my goal distance. I run/walk about 3 days a week, sometimes 4, with at least 3 days of strength training work, usually focused on my core and leg muscles that should help me avoid injury. I also make a point of stretching really well almost every day after my workouts. The two times I haven’t, I’ve at least done some basic stretches to try to make sure I feel better the next day.
Usually my goal distance is four miles, even if I have to walk the majority of the distance. I chose that distance because I wanted to make sure I wasn’t barely dragging myself over the finish line for the Below the Belt Stride & Thrive. See, a 5k is just over 3.2 miles. The few times my goal distance hasn’t been 4 miles, it’s been 3.5 miles. It’s not that I’m an overachiever, I just really don’t want to fail in May.
I didn’t make it to 4 miles today. I tried Week 2, Day 1 today. I had repeated Week 1 because I was really struggling to run all 8 one-minute running spurts. I was exhausted before I even started today, but I was determined to try and confident that even if I didn’t run all of the 90-second spurts, I’d run at least part of all of them. I barely ran half of them before having to stop trying to run. I barely walked to 2.2 miles. It took me 45 minutes.
I was almost in tears while walking. Up until the point where I realized I was stumbling and swaying on the treadmill I was still determined to make it to 4 miles. Have I mentioned that I’m a pretty stubborn lady? Giving up is not something I do easily, not when I’m really trying. If I have a goal and I’m working toward that goal, I almost always make it, even if I feel like animated death to do so whether it’s a deadline or a workout goal. It’s part of my personality.
Failure is scary. In this case, it was particularly scary because I am terrified of not finishing the 5k in May within an hour (the time allotted by the organizers). Somehow not finishing in time, even that long of a time, has gotten tied up in my head with not fighting my cancer hard enough, not working hard enough to build up my lung capacity, which I feel like I’ll need for the future. Yes, I have a lot of healthy lung tissue now so the bit that’ll be damaged dealing with the biggest lung tumor isn’t a big deal (pun semi-intended), but what about the next time a sarcoma gets to that size? And the one after that? And the one after that? I have to make my lungs efficient so I can handle as much radiation as possible so I can fight as long as possible so I can stay alive for the cure I honestly believe is waiting around some future corner.
My belief in that cure’s future existence is a big part of why I’m attempting this 5K and why I’m fundraising for Hopkins. It’s not the only reason. A lot of it is in gratitude for the amazing care they have shown me. A great deal is because of the incredible hope they provide me for future women who might have to deal with these cancers. One of my oncologists has published about a test that might, in a hopeful timeline, hit the market within less than a decade, and significantly reduce deaths from gynecologic cancers by detecting them much, much earlier.
Despite all that, some of why I’m running and fundraising is deeply selfish. I want to see my beloved nephew grow up. I want to find a way to contribute something wonderful to this world. I want to live. In order to live, I need to stay alive long enough for a cure to be found. I am deeply afraid of failing and not fighting hard enough.
I’m going to do my best to trust my loved ones and believe that not making my goal today isn’t failure. It’s just one bad day that has taught me to take a total rest day on May 19. It’s one bad day after multiple nights of not sleeping well (due to fear, funnily enough) catching up to me. It’s just one bad day. It’s not failure.
I have to trust them that it’s not failure, because this time failure isn’t an option.
Physically, I feel amazing. I’ve been working hard to walk faster and further, even running for 30-90 second spurts multiple times on my walks. My hand brace is off and I’m pushing myself hard to regain strength and flexibility in that hand. I’ve signed up for the Below The Belt Stride and Thrive 5k and 1 mile run/walk to raise money to support the amazing work Hopkins does for women suffering from gynecologic cancers. And by signed up, I mean for the 5k. My body feels stronger than it has in ages.
Short spurts of running during a walk might not seem like much, but for me they feel like I’m running for my life. I’ve never run a 5k. I don’t know what treatments I’ll be in next year. I need to do this now.
I had a scan on Friday. I’m not ready to go into too many details but it showed significant growth. The first thing we’re going to do is increase my chemo pill from 3 to 4. The fatigue and other side effects will be worse, but I am determined to handle them.
My oncologist is going to consult with a specific radiation oncologist about stereotactic radiation for the two that have grown the most. It’s super focused radiation. Likely 1-2 weeks of hour long sessions every other day. I should hear back by Wednesday.
If we do this it would be at Sibley at least. There would be a mapping scan, another few small targeting tattoos, then I’d start radiation 10-14 days later, early April.
It’s good that they’re very targeted. One of the two largest tumors is in my abdominal cavity. The other is in my left lung. It’s in my lung. They’re going to aim radiation at my lung and I’m terrified.
So, despite my fatigue getting worse I need to push myself. I need to spend the next two weeks trying to run because during radiation I’ll be lucky to walk 5 blocks, let alone 5k. After? God knows. I’ll have about a month to rebuild.
My oncologist says it’s good to build my lung capacity. He apologized for the bad news and I told him honestly that it was better than my nightmares.
I have some awful nightmares .
I asked if we were at the end of the road. Dr. Meyer said no. I asked if we could see the end of the road. “No,” he assured me.
So I’m going to have faith and try to run because what else can I do? I’m going to try to be strong. I’m going to try to move forward in hope despite my fear.
Physically I feel the best I’ve felt in ages. It’s a lie my body tells my mind. My tumors are growing and I know what I’m running from. I also know what I hope I’m running toward. Hopefully each step will help me keep believing that I will get there, and someday my body will be as strong in truth as it feels right now.
Every muscle in my body is sore. My ankles and knees feel weak. I literally fell on those knees while walking last night because my legs simply decided they were done working. Don’t worry, it was super soft dirt so there wasn’t any pain! Jarrod had to help me up and hold my arm so I didn’t fall again. I even took the stairs to our room at the Lord Nelson like a small child, shuffling both feet to each step and nearly draping myself across the railing as I went.
I cannot remember feeling more alive and full of joy.
We rode for three hours over open wild fields, across dry creek beds, and under an open sky. Towering sandstone cliffs surrounded us, testament to the power and glory of nature. We saw Aussie birds, semi-feral horses, and mobs of kangaroos. We walked and trotted and my much-poisoned body remembered how to rise with the rhythm of my horse’s hooves, lean on rises and dips, sit deep, shift my balance and contract muscles to communicate.
I was highly imperfect, but I cannot remember feeling so right and alive. When the guide, who is also a teacher, complimented my handling of Tubby (my horse), I’m pretty sure I glowed brighter than the setting sun.
So far, this honeymoon has been an incredible return to being a couple in love, rather than a cancer patient and her caretaker. Maybe I take the occasional breather on walks, move a little slower, and napped yesterday after breakfast. But those things haven’t kept me from eating on the harbor patio of the Sydney Opera House, exploring a museum about the history of The Rocks , or visiting the Royal Botanic Gardens.
Last night I felt alive. I not only didn’t feel like a patient, I didn’t feel like I was someone constantly feeling the hovering presence of death. I was living, not dying, and I felt joy flowing through my veins and tired muscles. I could not, and still cannot, stop smiling.
I am so grateful there is something I can do that fills me with joy and life. I will never forget riding in the Blue Mountains by kangaroos and Aussie birds with my husband. So many people made that gift possible. Thank you for making me laugh and bubble over with pure happiness and vitality. I am alive and I am amazed and I am grateful.
And now I’m going to sit on a beach and soak in the ocean to soothe those aching muscles. Resting is also a part of being alive.
A friend of mine, Julia, announced that she’ll be writing for an ecumenical Millennial Christian feminist blog, Grace & Feminism. Given that I tend to enjoy reading actually-feminist Christian writers, am technically a Millennial, and deeply respect Julia, I decided to check out the blog.
The third or fourth post that I read in the course of my poking around the site made me pause. It contained the line “I was so tired of God using me for other people to find strength”, shortly followed by the question: “do you know how taxing it can be when you’re the one inspiring others because of how crappy your life is…?”
It almost seemed like a response to something I had near yelled at my counselor the day before: “My name isn’t Job!” That exclamation had been followed by sort of rant that boiled down to me stating the various difficulties of the past few years, with particular emphasis on the past year, and stating “I think I’ve coped pretty fucking gracefully with…” before each difficulty. I then remarked that, while I don’t necessarily believe that God causes the bad things in our lives to happen, the only purpose I could see for me tripping and breaking a bone in my right hand was, well, to break me.
See, I’m right-handed and not at all ambidextrous, so having a cast on my right hand eliminates most of the activities that have helped me to cope “pretty fucking gracefully” – as I so eloquently put it. I can’t quietly journal by hand when I wake up in the middle of the night, nor easily type, so coping by writing is suddenly much harder and full of its own frustrations. I can’t tie my own tennis shoes, so escaping for a walk without needing help is right out the proverbial door. Most of my yoga modifications involve using my arms and hands for balance, so losing myself in yoga seems unlikely. And, well, the whole coloring thing is right out, since my three-year-old nephew has better fine motor control right now than I do with my left hand. Even reading is harder, though thankfully I can manage that with some modifications and difficulty in how I hold a book or my Kindle. In short, most of my coping mechanisms, habits diligently developed because of how crappy aspects of my life has been over the past few years, seem to have been taken from me just as I have to deal with a shitload of other crap.
I don’t want to miscommunicate here. Overall, to paraphrase one far greater than I am: although I dearly wish that this cup had passed me by, I am grateful that some good has come out of it. I have genuinely hoped that my mourning might make me better able to be of service to others who mourn. I have also hoped that by writing about my cancer as honestly as I can that I might be of some small service to others who struggle, that they might find some use in reading my words. I truly am grateful and proud whenever anyone says that I’ve helped or inspired them. It means more to me than I know how to say.
That, well, said, it was wonderful to read that someone else who likely agrees with the idea of hoping that her difficulties serve others has struggled with wanting to not be the damn inspirational movie of the week. I’ve never yelled at God, “I’m tired of you using my pain to help other people. I need something good!” However, I have certainly yelled at God that I’m tired and that I need something good.
I was once asked by someone in mourning why I hadn’t lost my faith despite everything that has happened. I remember being surprised by the question and assuring the individual that I don’t entirely understand myself why I haven’t lost my faith. I shared something similar to what that Millennial feminist Christian writer shared about herself – that of course I had felt rage at God, but that I didn’t think God minded me yelling and that I still strongly felt that God was with me in my suffering. God walks every awful step with me. I believe that with all my heart. Yet, I still yell at God for not protecting me, for allowing a life so full of promise and hope become cluttered with pain, grief, and distress.
My grumblings this past month have been anything but graceful! Rather, they have been full of pain and rage and tears. They have included the wailing question of why this stupid, relatively-small-in-the-grand-scheme-of-things bone fracture happened on top of every-fucking-thing else that has happened and that I am still dealing with and struggling through. Despite all that, I do still think that God is okay with me yelling heavenward. In fact, I still think God finds ways to remind me of that and comfort me.
I drafted the first 800 words of this post over a week ago. Then it sat on my laptop waiting for me to edit and publish it, but something held me back. As honest as I try to be, something about this post felt like that old metaphor of writing being simply opening up a vein and bleeding. It’s not easy to hold the concepts of 100% belief alongside the reality of rage and deep distress without feeling guilt or like my faith simply isn’t strong enough. What finally made me decide to finish and publish this post? Well, it was one of those reminders I attribute to God.
My husband and I went to a Wednesday service this week. During service we read Psalms 116. As we read it with the rest of the congregants, verse 10 stood out to me. It echoed in my head and would not leave. It seemed almost like an insistent whisper saying that maybe somebody needed the same reminder that I did. Maybe it’s simply hubris, but it felt like God telling me that I needed to finish and publish this post that I was tempted to keep hidden and unpublished.
What was verse 10? Well, in the book used in that Episcopalian service, the words of Psalm 116:10 were as follows:
I believed, even when I said, ‘I have been brought very low.’ In my distress I said, “no one can be trusted.”
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.
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.
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.