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.
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.
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.
I’m not at all sure how we’ve gotten to November 20th. I’ve been meaning to write this post for awhile now, but things kept getting in the way. Sometimes fun activities, sometimes exhaustion, sometimes my brain just feeling fuzzy and unable to string two coherent sentences together.
So, I’ll make this short and sweet. As of my latest scan (end of October), my sarcomas are pretty much stable, one of my blood clots is gone, and the clot in my lungs is neither growing nor blocking anything important! This is a good result and the best that could have realistically been expected.
The downside of being an optimist? You don’t always have realistic expectations. I understood that my treatment is meant to stabilize my sarcomas, not shrink them, and I knew that my blood thinner is meant to keep my clots from getting bigger, not eliminate them. However, hearing the news that Friday didn’t result in the giddy glee it ought to have.
Instead, I felt hollow. It wasn’t bad news, but it wasn’t the news I’d wanted. Then, of course, I felt horribly guilty and spoiled for wanting more than I’d gotten. It was like being 9 years old and disappointed that my parents hadn’t changed their minds and gotten me a live pony for Christmas. That disappointment was always quickly followed by guilt because I had one of the best collections of model horses, in addition to weekly riding lessons at Rocky River Riding where I got to ride lots of different ponies and horses.
In retrospect, this was a far better deal than if I’d been given an actual pony. Of course, when I told my sister this (over a week later because I suck with expressing my guilt), she was brilliant in the best big sister way. Laura simply replied, “Wishing for a pony is legit. Especially when a pony is ‘having less cancer.'”
As I said, it’s the downside of being an optimist. I believe so strongly that a literal miracle will happen that it’s hard to remember to celebrate when I get normal, realistic good news. My next scan is at the end of December, a few days after Christmas. Hopefully this time if/when I get good-but-not-miraculous news, I’ll rejoice instead of feeling hollow that I didn’t get my pony.
There are enough other difficulties that I need to remember to celebrate the wins however they come. I’m coping with a newly-diagnosed asthmatic cat (inhalers for kitties are not cheap and my cat is not easy to medicate, just saying), the holidays that bring up my grief as though it’s new and fresh, and general other life stuff because life doesn’t stop just because you’re dealing with a big and awful thing.
My dad’s birthday on Tuesday was incredibly hard. I had been doing okay leading up to it, hurting but not falling apart. My husband and I met up with my sister, brother-in-law, and nephew at a Mexican restaurant Dad liked down here to have dinner the night before Dad’s birthday. We raised our margaritas to toast Dad and my nephew adorably wanted to cheers with the rest of us. I think Mom and Dad taught him that, and it always makes my heart squeeze with a reminder of how much I adore him, and now how much Dad loved his grandson. Dinner was really good and I didn’t cry until late at night when it hit me that for the second time the next morning would be Dad’s birthday and how unfair it was that he couldn’t celebrate that with Mom.
All in all, though, I’d done better emotionally than last year, so I wasn’t prepared to kind of fall apart on the actual day. Plus, to make the day even crappier, on top of missing him, this year had the addition of occasional semi-morbid thoughts. One was wondering what the analogy would be to drinking a margarita or milkshake if things go bad for me. I know that’s self-centered and probably egotistical, but I also suspect it’s normal for someone with stage iv cancer on the birthday of her dad who is up in Heaven instead of here on Earth where she could call him.
I spent most of the day on the couch rewatching the first half of season 2 of Supergirl. Dad had said that her optimism reminded him of me so it seemed fitting, even though he only saw most of season 1 and, obviously, none of season 2. I had thought of decluttering or cleaning since, when I was a kid, Dad used to spend hours helping me clean my room on weekends. I was awful at doing it on my own — it seemed overwhelming, plus I was super easily distracted by any book that I picked up to put away. It was easier with my dad patiently helping me and making sure I didn’t start reading any books I picked up. With books, I have always had the self-control of a beagle with steak.
Not being able to call and wish Dad a happy birthday hurt so damn much. Despite that, multiple times throughout the day I thought/prayed variations on, “As awful as this is, I don’t want this to be the last time I’m alive for Dad’s birthday. I want to be raising a margarita and drinking a milkshake to him for years and years to come.”
I guess that’s the basic nature of grief. As awful as it is — at least it’s preceded by love. The pain of grief is better than not having loved someone enough to feel a deep pain at their absence. I hate that Dad is gone and I hate the pain of missing him, but I’m grateful to both still be here to feel that pain, and to have had such a wonderful dad in the first place. He really was the very best. I’m grateful to be his daughter.
We will respond and thank everyone individually (eventually) but reading all the anniversary wishes this week has reminded Jarrod and me of all the incredible love that surrounds us and improves our marriage. We’ve made this into a whole anniversary week thing (because, why not at this point in our lives?) and one of the themes has been how abnormally lucky we are to have so many amazing people in our lives, helping us to be better individuals and a better couple.
Thank you. The past two years haven’t been easy (let’s go with “so much harder than we could have imagined that we have both yelled at God about events and struggles of the past two years”), but we’re both still here, able to laugh and rejoice in our love for each other and try to reflect a little bit of that love back out into the world. We never wanted a life of wealth and leisure, we wanted a life where we were able to make a difference and make things better for other people. Because of our loved ones, we’ve been able to keep trying to live that life.
Our wedding was incredible because of our loved ones making it that way. If you want to look back two years and see some of those loved ones, Jonna Michelle Photography has some wedding photos on her blog. Below are just a few of our other favorite shots that never fail to make us smile and feel loved.
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.
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.
The Senate’s healthcare bill is just one of the reasons I’m awake in the middle of the night, sipping warm milk, trying to believe enough people will do the right thing.
However it is a big one. I try not to judge people, but it’s hard not to consider certain politicians to be evil. Taking away healthcare is immoral and wrong. I believed that before I got cancer. I still believe it even though certain parties consider me, and those like to me, to be worthless drains on the system.
Please, call your senators, ask them to vote No, then ask your friends to do the same. I know that can be hard. I called while exhausted on Monday. I left a heartfelt plea for Portman because I believe Ohio is better than this and I’m a native Ohioan. I then asked a friend in CO to call her senator. It’s hard to put yourself out there. I know. It’s worth it though, to know you fought with everything you had. There’s more for me to do and I’m gearing up courage to directly ask Republican friends and family to make more calls, and especially to ask them to be open and public about their calls so as to influence their friends who I don’t know.
I’m lucky compared to many. I have ample evidence in my life of good, compassionate people who care about more than party lines. I have friends who have helped me apply for the benefits for which I’ve worked, and eased my guilt at not doing more to contribute to the good in the world. At 32 I planned to be helping the world and saving animals, not begging people to call their senators to fight for what should be basic rights.
I still believe in my deepest heart that I will come through this. I don’t know if I’ll simply be lucky and stay stable or if science will find an unlikely miracle that puts my cancer into remission. When, if, that day comes I know I’ll give back to the world again. I just need a chance to get there.
People often say “let me know if there’s anything I can do!” Here’s something all of you can do — fight the AHCA.
What is known about it is that it would lead to 23 million Americans losing their health insurance, there would not be federal protections for people with pre-existing conditions, and there would be no federal prohibitions against insurance companies reinstating annual and lifetime benefit limits. Oh, and the super rich would get a huge tax break.
I ran out my super high deductible within less than 30 days of being on my current insurance. How fast do you think I’d hit annual and lifetime benefit limits? How quickly do you think my husband, Jarrod, would become a young, bankrupt widower?
If you live in a state, call your senators and ask them to vote NO on the AHCA. Call them daily. Even if you think that it would be awesome for me to die so that wealthy people can be wealthier, you should at least oppose the secret, closed-door, super rushed process that’s happening. It’s the opposite of democracy to put together a bill in secret, allow no time for negotiations, have zero public hearings, and rush a vote. Even GOP members are starting to say that’s problematic. So you have no gorram excuse not to call.
Second, whether you live in a state or elsewhere, tell all of your friends in states to call their senators and ask them to vote NO on the AHCA.
This is a moral issue. This is a matter of life and death for millions of people, likely many of you! This is not limited to those not on employer plans. This affects everyone in the US. This deeply and personally affects me and my chances of seeing my nephew start kindergarten. Please make those calls and then ask your friends to do the same.
Not sure who to call?
The United States Senate website has a useful feature in the upper left of the screen where you can look up your senators by state, and it’ll provide not only their DC phone number, but also usually their individual websites which should list their state offices. Call as many of your senators’ offices as you can to make sure that they know you oppose the AHCA. Have problems? Comment below and I’ll look up their numbers for you.
Many of you are in Ohio and Portman is a key vote and has been said to be on the fence, so your call is especially important. His numbers to call are:
Ohio’s other senator is Sherrod Brown, whose numbers are:
Many of you also live in Indiana. Your senators are Todd Young and Joe Donnelly. Todd Young’s contact numbers are:
New Albany: 812-542-4820
Donnelly’s numbers are:
Fort Wayne: 260-420-4955
South Bend: 574-288-2780
Not sure what to say?
Start with your name and that you’re a constituent. Then say that you are opposed to the AHCA and want your senator to vote NO if it comes up for a vote. Mention that your friend/cousin/daughter-in-law/other needs prohibitions against annual and lifetime limits on what insurance companies will pay for care, as well as protections for people with pre-existing conditions. Otherwise, rather than giving back to her community with her husband, she’ll soon leave behind a bankrupt young widower consumed with grief. Or, if you don’t care about that, simply state that you’re opposed to any vote on a bill affecting so many people without time for public comment and multiple public hearings. Say thank you, and that’s usually it.
If you want a more general script, check out 5calls.org.
Want to learn more?
The Skimm put together a fantastic guide that has timelines, key players, and more to help people understand the current state of healthcare in the US, how we got here, and what’s happening in politics about all this. I highly recommend taking some time to read it.
Please call and please ask your friends to do the same. I know that it can be scary to do so, but isn’t the death of someone about whom you care even scarier?
And, because this is such a serious post, here’s a photo of me meeting one of my idols this past weekend with my husband and two of my best friends. Her name is Felicia Day and she’s amazing, and also tweets her opposition to the AHCA. She was also incredibly kind when I teared up talking about my dad and just seems like one of those rare people with a ton of talent, but also a ton of goodness.
*Note, this blog post is similar to some of my FB posts over the past few weeks. This issue is deathly important to me so I wanted to combine some of the information and share here with additional details in hopes of convincing as many people as possible to call and fight the AHCA.
So, the good news is that I’m not in quarantine anymore, there are no new sarcomas, and my sarcomas are not growing.
The bad news is that the sarcomas haven’t shrunk since the previous scan and there’s no way to induce further shrinkage, so the best we can do now is aim for stable with a good quality of life.
That was not what I was expecting to hear from my oncologist. Also “quality of life” is an oddly terrifying phrase to hear because it somehow drives home the “terminal” aspect of “terminal disease.” Needless to say, there was not any bouncing with glee at the good news this time around. Instead there was serious discussion and decisions regarding my options.
I guess that’s another piece of good news — I have options. Here’s what we chose.
We’re going to be changing my chemo regimen to one that has a better clinical record of maintaining sarcoma stability. That means that I’ll be doing outpatient chemo instead of inpatient, which should at least make our schedule more predictable and be less of a hassle. I’ll get two drugs for 12 weeks, then switch to just one of those drugs after that.
The two drugs will be one that I have been getting and a new one that was just approved by the FDA in December 2016. The new drug is an antibody drug and has very few side effects. The one that I have been getting is the less toxic of the two drugs I had been receiving in my inpatient chemo, but it is the one that causes what I call “burning hand syndrome” where the palms of my hands feel for a day or two like they’re horrifically sunburned and for which the only relief is literally gently placing my hands on an ice pack. I’m lucky that this has only happened to my hands (so far) since for many patients it affects both the palms of their hands and the soles of their feet.
Suffice to say that the scan results are scary and not what I expected or wanted to hear at all. It’s been confirmed that I’ll be starting the new regimen on May 26. So yay for the next step?
As Jarrod says, we’re focusing on stability so that I stay alive long enough for the next amazing scientific breakthrough that actually cures me. Just because it seems impossible now doesn’t mean it won’t be possible next year. Also, I should be able to do a lot of living and I’m doing my best to do that (even if it does still, for now, include being more tired than a healthy person). I want to figure out what normal can look like. It will include us taking at least two weeks for a very delayed honeymoon. Right now we’re looking at January 2018 for that.
I should provide a general warning though that, depending on the day, my humor has taken a bit of a dark turn. It’s not stuff I’m likely to write (since I do edit these posts), but it might come our verbally. Today when I was happy and having a great time, I had to clarify that I meant something as “humorous, not depressing!” Until the words were out of my mouth I hadn’t realized that something that made me giggle inwardly might actually come off as depressing to others. I may be unaware that something comes off as morbid or dark, so please do feel free to say something. So long as you’re not judgmental about it (because, let’s face it, I have the gorram right to be morbid and dark in my humor if that’s what gets me through this), I’d much rather know if something I said came off as depressing rather than funny. I genuinely don’t want to depress people and I will say if I just need to be depressing and down in the dumps. What I ask of my friends and family is that you tell me if a joke doesn’t land or a comment sounds really depressing. Deal?
In the meantime, I’ll keep the “cautious optimism” that my oncologist has, and hold onto my faith that, as my favorite mystic wrote, “all will be well” even though I may have times of fear. I don’t believe that faith means that we have no fear, but that we keep trying to trust even when we’re angry and afraid. Between my faith, my friends, and my family (including my cat) I do believe that Jarrod and I will get through this.
There are still lots of reasons to smile (like getting to play with a friends’ awesome dog).
Monday will be one year from when my dad passed away. Ironically my mom had been visiting my sister and me to attend a walk benefiting the gynecologic cancer research and resources at Hopkins. It was meant to be a celebration of survival for our family in some ways. Instead we lost my dad whose love and kindness had gotten all of us through so much.
If you never got the chance to meet my dad, here’s a video that my brother-in-law found of my dad speaking at a cultural garden dedication:
It’s very stereotypically him in a lot of ways: his humor, compassion for others, obvious love for my mom, and ability to use his own background to speak to the need for caring about others. I know I’m biased as his daughter, but my dad was really wonderful.
While my siblings and I were in Cleveland trying to process and cope in the immediate aftermath of losing our dad, we started dealing with some of the practicalities. One of those, that I’d never really thought of before then, was dealing with magazine subscriptions. One magazine that my dad had been subscribing to for as long as I could remember was Analog: Science Fiction and Fact.
It had science fiction novellas and short stories, sometimes serials that would be published over months, as well as thought-provoking editorials and articles about cool new real things in science. When I was a kid I started paging through my dad’s copies and reading some of the easier stories. Eventually I read all the stories, and after that all the stories plus the factual articles. My dad and I would discuss the stories and articles, even when most adults probably would have assumed I was too young to understand them.
When I went to college my dad would bring his copies to Cincinnati for me to read. Then I’d catch up on the issues and we’d discuss them over the phone or when we were next in the same town. The same thing happened when I moved out to near DC. One month my husband’s high school friend had a story published in Analog. When I told my dad, he was so excited that we knew someone who had been published in Analog and whose story he had enjoyed. I always thought that some day I’d polish one of my short stories enough to submit it and have it published, and I’d surprise my dad. I guess I waited too long.
When my husband moved my dad’s car into the garage in May of last year, he found the normal items my dad always kept in the car, along with the most recent Analog. It looked like my dad had read it and was going to either set aside or mail it to me so I could read it next. Jarrod brought the Analog in and I remember weeping because I’d never get to discuss it with my dad.
Jarrod also was good enough to ask my mom if we could transfer my dad’s Analog subscription to me instead of cancelling it. Jarrod wanted me to have that subscription that had gone back decades and given so many great memories to my relationship with my dad. I’m really glad that he did because there is something about knowing that it’s unbroken.
Both the copy from the car and the copies that started arriving at our home were bittersweet. In one sense they were a continuation of something my dad and I loved and a reminder of something we shared. Trying to open them though, was too hard. I’d start to pick one up and be struck again by the fact that we’d never talk about the stories again.
I asked Jarrod once if it bothered him, that these were coming to our home and I wasn’t reading them, just putting them on the shelf for the future. He assured me that it was okay and he knew there would come a time when I’d be happy they were there and I’d start reading them again. He didn’t mind waiting for that, whenever that might be.
That time turned out to be a few weeks ago, almost a year from when my dad and I last talked. I looked at the newest Analog that had come in the mail and I picked it up. I started reading the editorial. Nor surprisingly I teared up a bit and had to stop a few times. I tried to read the first story, but couldn’t. I let myself cry a bit.
Even with having to stop, even with the crying, it felt like progress of a sort, a small step if you will. One of my brother’s favorite sayings that I also love is an admonition to take the next right step and trust in God. Essentially, I’ve always taken it to mean that we don’t have to try to do everything all at once. It’s enough to take the next right step, whether figurative or sometimes even literal, and trust that things will work themselves out. In the case of grief, it’s not trying to not feel pain all at once, but maybe just letting ourselves take whatever the next step is, and there are a lot of them. The steps that have been healing have included putting Dad’s values into play and speaking out against racism and anti-Muslim prejudice, as well as returning to the restaurant where we ate together as a family on his last trip to Silver Spring. One really big step for me was this one, starting to again read the science fiction and fact magazine we both loved.
I haven’t finished the issue yet, but I’ve read a few more stories in it and I’ve stopped crying after each story. I think that’s progress. Admittedly, tears have been falling down my face as I’ve typed this blog post, but I’m okay with that. I don’t remember Dad ever telling me to hide my emotions. I mostly remember him handing me a clean handkerchief when I was crying.
I count myself incredibly blessed to have had a great relationship with my dad where we could seriously discuss and share in a love of science fiction and general nerdery. My dad introduced me to so many worlds, I kind of hate that I’d only just started to introduce back.
He became a huge fan of Cherie Priest’s Clockwork Century series after I lent him my copy of Boneshaker. Because of how much I loved Doctor Who, and after sitting in on a few Christmas specials that Jarrod and I watched while visiting, Dad caught up on new Who and was looking forward to the next season. We’d discuss the different Doctors and what tied them together. When I told him how much I was looking forward to Supergirl hitting Netflix because everything I heard made it sound awesome, he started watching it. One of my most precious possessions is a voicemail from him on a day where my chemo was making me feel awful and he wanted to cheer me up. In the relatively long voicemail he talks about how he’s really liking Supergirl and that she reminds him of me because of her optimism and hope.
Cancer, even stage IV metastatic sarcomas with super toxic chemo and awful side effects, is nowhere near as hard and as awful as losing my dad. I miss him so much and I still sometimes yell at God about that. Monday I plan to watch Star Trek or Supergirl during the day and in the evening get together with my sister for (mild) Mexican and Cleveland baseball watching.
In the meantime, I’ll read some more science fiction and keep the faith that someday I’ll see him again. I believe that he’s in heaven and, ultimately, I’d like to think he’s proud of how I’m handling the curveballs.
You know what is really hard to do when you have joint pain? Type a blog post. The good news is that this round I did not experience horrific jaw pain. The bad news is that instead of 1 day of joint pain that was managed with 5mg of oxy, I had 3+ days that required 10 and 15 mg of oxy to manage. Still, I will take that over the jaw pain.
I also found out that my white blood cells were super low (like 0.08 when normal white blood cell counts are around 4.50-11). This unfortunately meant that I was advised to skip Easter services. Normally, Jarrod and I try to go to the full Tridium — Holy Thursday, Good Friday, Easter Vigil, and Easter Day (though we skipped Easter Day last year because I wasn’t fully recovered from first chemo). It hurt pretty deep to have to skip something I’d been looking forward to and constantly rechecking with each schedule change to make sure I’d still feel up to attending.
Thankfully our parish came through for us. One of our friends tested out skyping us with his phone set up between two hymn books in the choir loft on Friday, then repeated it on Sunday morning. It was lovely. I cried because it meant so much to me. Then, our friend and pastor, Amanda, came over on Easter after service to bring us Communion. The blood made my poor tongue burn (chemo kills digestive cells, including taste buds, so essentially my tongue is really raw a lot of the time as baby taste buds try to regrow) but it was so fulfilling to have Eucharist on one of the holidays I consider most important.
It hasn’t been an easy round by far, and there’s much more to write soon about kindness and gratitude, plus the perspective gained from being treated on a leukemia ward, but that’ll come another day. For now, I’m improving greatly and I’m not in pain, but I’m still dealing with a lot of chemo fatigue so I get tired and exhausted pretty easily. Walking 2 full laps of our condo building hallway left me shaking and leaning on the wall the other evening, even with multiple pauses to catch my breath.
Also, on a crabby note, having allergies on top of chemo side effects just feels rude, like the universe rubbing salt in my wound. Thankfully those are getting a bit under control. Being exhausted and fatigued, but unable to sleep for coughing (or, my husband’s favorite — me being so exhausted I literally sleep while hacking away like some old school consumption patient), is just not cool of the universe.
However, we’re in Easter. My husband made me a delicious Easter dinner complete with a from-scratch Swiss cake roll. He made me a display of rabbits to call back to a childhood tradition my sister and I shared. I got to see lots of photos of my nephew at my childhood ballpark. And, I got to take part in the Easter worship because the people of my parish are kind and considerate, and went out of their way to include us when it would have been so easy for them to simply say they were busy and unable to help.
I think, even more than stuffed bunnies on a Pope JP-II-blessed Jubilee cloth, that’s the real spirit of Easter.
You’d think that, after receiving good news, a person would shout it from the proverbial rooftops. Sometimes though, good news is so unexpected, confusing, and overwhelming, that a person needs to sit with it for a bit before sharing widely. That was the case with the good news I got on Friday.
Here’s the super short summary: I’m in the luckiest third and the chemo is working. A number of my sarcomas are shrinking, the others are stable, and there are no new sarcomas. This is really good news and I’m thrilled with it.
It’s news that is worthy of celebration. Jarrod and I spent the weekend feeling like a weight had been lifted from our shoulders and we could finally breathe. As awful as the side effects have been (and believe me, they’ve been horrible), we can put up with them more easily if we know that the chemo is working.
What does this mean for the future?
Well, we’re not looking too far ahead with too many specifics right now. In the immediacy, it means we continue with chemo with the drugs I’ve been getting. Because my platlets are dangerously low, I’m repeating my bloodwork this Thursday, then (assuming the numbers are better and that a bed is available) starting my third round of chemo on Friday. For the foreseeable future, chemo will start on Fridays. My cycles will still be three week cycles. So there should be chemo, then a week or so of feeling like crap, then a week of feeling better and better.
I’ll do two more rounds of chemo, both with transfusions at the end to help me recover, then have another scan. According to my oncologist, they’ll expect to see continued successful response to the therapy. Essentially, when the first scan shows a good response, the next scan usually does, too. Assuming that holds true for me and I’m still “tolerating” the side effects, I’ll have a final two rounds of this type of chemo after that. One of the drugs that I receive has a hard limit on how much a patient can receive due to how toxic it is. I can’t receive it more than six times in a row. It’s possible in the future I could receive it again, maybe, but it wouldn’t be safe for me to have a seventh cycle of chemo with the same drugs I’m receiving now.
That means that after six rounds, we’ll look at the scan and evaluate our options. Maybe the sarcomas will have shrunk enough that it’ll be safe to attempt radiation. Maybe we’ll have a miracle and they’ll have shrunk to oblivion! Maybe we’ll decide to let my body recover and just monitor what remains to see if they stay stable (this happens). We really won’t know what the options definitely are until we see what’s on the scan.
Admittedly, there’s a chance I might not make it six rounds. There’s a chance that the toxicity might prove too much for me and we’ll have to change course after the scan to try a different drug. We are lowering one of my drugs by 10%. The goal is that it’ll moderate the worst of my side effects without affecting the shrinking. I’ll try to write later this week about the side effects of the past week, but suffice to say they were really awful and I could not have borne them without my husband, mom, sister, brother-in-law, and friends. To be honest, I’m not sure I could face the possibility of them again but for knowing that the chemo is working.
“I can handle getting hit by a truck if I know it’s working,” was an actual sentence I uttered while discussing my willingness to go through misery with my oncologist. And that’s true, I think. Having the support of my friends and family also makes it a lot easier.
As I noted, we’re far from out of the woods and I’m going to continue needing prayers, hope, encouragement, and help. For right now though? I’m well-aware of how incredibly lucky I am. I’m grateful, happy, and smiling. I’m not afraid of those woods. Well, not too afraid, at least.
I’m tired, but I’ll be grinning when I go for my theraputic walk this afternoon. My chemo is working. I’m already beating the odds and that just strengthens my belief that miracles are possible. I’ve got more to offer this world, and I believe I’ll get the chance to make good on that offer.