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.
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.
Toby approves of Deborah Blake.
You want more than just an imperative command from me to entice you to purchase a book? Fine, I guess I can understand that. So, let me tell you a bit about the book, the fictional world it’s a part of, and why I love it so much.
Dangerously Divine is the second book in Deborah’s Broken Rider series that are a continuation of her Baba Yagas series. You don’t have to read her Baba Yaga series to thoroughly enjoy her Broken Rider series, although I love that series as much as the Broken Rider series. I absolutely love Deborah’s take on the Baba Yaga myth that is the backbone to the shared world. It fits into my (admittedly not massive) understanding of Russian fairy tales, while still being fiercely feminist stories of strong women. The women in both series are strong, though imperfect. Their flaws make them more inspiring heroines. The men are also a far cry from too-perfect-to-be-true male characters, and thus more believable. Despite the magic, Deborah makes her heroines and heroes seem like actual people who could inhabit our real world.
Dangerously Divine focuses on Gregori Sun who is trying to discover a new path in life now that his old life has been taken from him. He needs to find both spiritual healing and a way to save his life. Although the cure I need is unlikely to come through magic, I can identify with Gregori. Like Gregori, I thought that I had a calling and something outside my control took that calling away from me. Like Gregori, I struggle not only with a physical ailment but with figuring out my path.
Gregori’s search takes him to a Buddhist monastery in Minneapolis that allows laypeople to live and study with the monks, so long as they follow certain rules. Unlike Gregori, I’m unlikely to try either Minnesota or any sort of monastery to figure out my path. While studying, Gregory meets Ciera, a librarian in Minneapolis who helps homeless and runaway teens for deeply personal reasons. Ciera is full of strength and courage that she has honed out of necessity and a desire to keep others from falling into the same traps that once caught her.
Reading about people overcoming unlikely odds and finding courage even when afraid, reminds me that such things are possible. Books like Dangerously Divine do more than entertain me or distract me from pain or frustration — they help me stay hopeful and continue to do all I can to fight my disease. I know that bad things exist, books like Deborah Blake’s remind me that bad things, no matter how big and bad, don’t have to win.
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.
Just one of the ponies I was lucky enough to compete with in horse shows
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.
FYI, if religion and/or Christianity make you uncomfortable you may want to skip this post. I’ve no desire to proselytize or make anyone feel uncomfortable. As usual though, all are welcome to read if you so choose.
I started subscribing and while I’m not 100% at reading them every day, I find that when I do read them, usually something makes me pause and reflect. Some days the emails, or even just parts of them, strike a deep chord with me. One the other day made tears start cascading down my cheeks as I just felt a sense of rightness and love. From that email it was one particular sentence that resonated deeply with my soul, “God’s love was infinite from the first moment of creation; the cross was Love’s dramatic portrayal in space and time.”
Whatever else I have felt about religion and God, I have (almost) always known that God loved me. Reading that sentence, I thought about the times in my life when I felt unworthy or unloved. I felt such a sense of love and lightness compared to the understanding I’d developed/been taught as a child that the crucifixion was because God demanded a worthy sacrifice and that each time I failed and sinned, Jesus suffered more on that cross.It was similar to the first time I read Julian of Norwich’s Showings (mystic writings) and saw her describe original sin as humanity being like a child so eager to get a glass of water for a beloved parent that the child trips and falls into a hole. Salvation was Jesus showing us that the hole wasn’t nearly as deep as we’d believed and that we were already loved and saved.
Today I was reading some old emails that I’d missed in the hecticness of life and I came across an email on the concept of Freedom. This was another email where I found tears welling up. This time it was a few sentences, rather than just one:
“Jesus was neither surprised nor upset at what we usually call sin. Jesus was upset at human pain and suffering. What else do all the healing stories mean? They are half of the Gospel! Jesus did not focus on sin. Jesus went where the pain was. Wherever he found human pain, there he went, there he touched, and there he healed.”
There is so much pain in the world. I believe that must be more upsetting to God than most of the actions people like to loudly decry as “sinful.” The reminder that Jesus went where people were in pain and then he healed that pain, is deeply moving in a way I’m not sure I can put into words. I think I’m fairly open about my belief that we are meant to be Jesus for each other, and especially that I see God in those who help heal me physically, emotionally, and spiritually. The sentences “Jesus went where the pain was. Wherever he found human pain, there he went, there he touched, and there he healed,” are true to me on a deep level.
A peaceful and healing pond at one of the hospitals that is helping to heal me physically
Just in the past week I have witnessed so much pain. Yesterday I gave my mom a hug at lunch when she teared up while we talked about my dad. The other day, when I was desperately afraid my healthcare would be taken away, dozens told me that they were calling their senators to fight for me. On Twitter the other night, I saw people sharing their fears and concerns of quite literally dying if the ACA were taken away. Today, my husband and I spoke with a woman wracked with pain who recently buried her best friend after caring for him in his final months.
I don’t know if my hug healed my mom in any way, or if my husband’s and my comments helped the woman today. I do know my friends and loved ones helped heal my pain and fear. Pain is a part of life for everyone, and ever since that sarcoma grew in my uterus it’s been a huge part of mine. The pain is and will be healed. I don’t always know exactly how, but I do believe that healing will happen.
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.
Sipping from this mug, a gift from a friend, reminds me to believe in love.
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:
Cincinnati: 513-684-3265
Cleveland: 216-522-7095
Columbus: 614-469-6774
Toledo: 419-259-3895
DC: 202-224-3353
Ohio’s other senator is Sherrod Brown, whose numbers are:
Cleveland: 216-522-7272
Cincinnati: 513-684-1021
Columbus: 614-469-2083
Lorain: 440-242-4100
DC: 202-224-2315
Many of you also live in Indiana. Your senators are Todd Young and Joe Donnelly. Todd Young’s contact numbers are:
Indianapolis: 317-226-6700
New Albany: 812-542-4820
DC: 202-224-5623
Donnelly’s numbers are:
Evansville: 812-425-5813
Fort Wayne: 260-420-4955
Hammond: 219-852-0089
Indianapolis: 317-226-5555
Jeffersonville: 812-284-2027
South Bend: 574-288-2780
DC: 202-224-4814
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.
