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 be 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.
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.
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.
Today has been intense. I’m writing this from my chemo daybed at Hopkins and “intense” is simply the best word for it.
I slept poorly again (though better/more than the past several nights at least). While getting ready this morning I struggled with emotions about our country, as well as my own ability to create change, plus my frustration that this is my life now.
We did get to Hopkins on time and were able to see the amazing phlebotomy nurse who somehow accesses my port painlessly. Afterward, while (we thought) my Olaratumab was being prepped, we used the two hours to get a good lunch.
We decided to Lyft to Atwaters and stroll back. I felt absurd taking a car less than a mile, but lunch was delicious and the walk back afterward was exhausting at just over half a mile. I won’t always let myself indulge like I did today, but it made a huge difference in lifting my spirits.
That turned out to be a good thing. After returning and checking in early for my chemo, one of my nurses, Kim, came out to see us. My platelets and white blood cells were low and they likely couldn’t give me my treatment today. I held it together while she made it clear she understood how hard this was and that my oncologist’s PA would be coming up soon to talk with me.
After Kim left I started crying. Not sobbing in the waiting room, thankfully, but sniffling and unable to stop little tear drops dripping onto the mask Kim handed me to keep me safe from other people’s germs. Honestly, all that kept me from embarrassing myself and bawling was reminding myself of the panda masks a friend just sent that made me smile despite my frustration.
I’ve been trying so freaking hard so the possible delay and quarantine on top of being exhausted was too much for me to be stoic, let alone optimistic. This regimen was supposed to be easier. Since Friday I’ve been pushing myself as hard as I can and walking a ton every day, but it still wasn’t enough. My best wasn’t enough.
People talk about not wasting time, but every delay or quarantine feels like I’m missing out on life. I’m not greedy. I don’t want wealth (though, I’ll be honest, being able to afford Lyft and delivery makes cancer easier). When you boil it down, I want what any sane person wants: to spend time with the people and pets I love; to help animals and people; to feel like my choices have some effect on my own life (even if I know a lot is out of my hands); to live up to my potential and use my privilege for good; and to find moments of joy, silliness, laughter, and delicious food along the way.
Delays and quarantines feel like they deny those to me. I know that literally nothing I do can influence how quickly my blood recovers from chemo. I can support my body and do my best, but ultimately last week involved poison coursing through my veins. That has an effect.
Thankfully, because today’s treatment is just the antibody drug, not the traditional chemo drug, my oncologist decided it was safe for me to receive treatment today. I still need to go for more bloodwork on Monday to see if my levels have improved. I got permission to still see my family thus weekend, but had to promise lots of handwashing and that no one felt ill (plus that I’ll mask up before hugging my nephew). I’m not supposed to go to church and may have to skip a luncheon I’d been excited to attend.
So, it’s not full quarantine but partial, so I guess I’m partially frustrated, but trying to look on the bright side because that’s what I do.
I have an awesome care team that took the time to talk with me, my husband has been a rockstar, my family is willing to shift tomorrow’s dinner so I can still participate, I’ve got some great books to read, and I have incredible friends. Plus, the best part, within a few hours of writing this I’ll be home with my beloved cat 😉
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.
Since round 2 chemo got delayed until March 9 (instead of starting today, March 8), I figured that this evening would be a good time to finish that promised post about how chemo went. TL:DR inpatient chemo is so much rougher than outpatient chemo was.
I did report to Hopkins in the evening on Wednesday, February 15. We were lucky and our friend, Patrick, met us there while we were settling in to make sure that we got a delicious dinner from Atwater’s (best cheddar biscuits ever). He also then told dog stories to help distract me (Jarrod was also showing me videos of my nephew, but I needed a lot of distraction) while the nurses tried to access my port for the first time. Apparently the first time accessing the port is always difficult, and because my surgery was so recent, there was still a ton of surgical glue on top of where they needed to insert the needles. It was not a painless procedure, and Patrick has my and Jarrod’s eternal gratitude for helping us out and keeping me from screaming. I’ve been assured that the next time it won’t be nearly as difficult and painful to access, thankfully.
The first night was easily the night that we got the least sleep. This will be normal for my inpatient chemo. There are blood tests to be done while my chemo is mixing. Then there a lot of pre-chemo meds (things that protect some of my organs or avoid dangerous side effects) that they have to get through first, before they can even get the actual chemo drip started. In addition, there’s also a huge amount of various hydrating mixtures that they send down the tubes. Every single change that first night requires me being awake, even if I could sleep through having the bags changed. Our nurse was lovely and wrote down the approximate times she’d be coming in to change my bags so I’d at least know what was going on and have a sense of when it was best to nap. Jarrod was a total trooper, too, and helped me not freak out at it all. I think the longest interval of sleep we had was almost 4 hours long. Thankfully, I was able to get more sleep the other nights. The cumulative effect of all those medical fluids started to be seen by the morning, even though I didn’t actually get my first “chemotherapy” med until around 4 a.m. All told, between around 6 p.m. Wednesday and 7 a.m. Thursday, I had been given so many fluids that I had gained 1.26 kg!
Thursday wasn’t too bad. I was mostly pretty tired, but not nauseated or anything. I was glad that we had packed face and body wipes though. Because my central line was in the entire time I was in the hospital, I couldn’t take a real shower due to fears of getting it wet (getting a central line wet is apparently a Very Bad Thing). Between being able to change clothes though (yay for button downs!) and use the wipes along with rosewater spray from my friend Amina meant I felt somewhat human at least. Jarrod also decorated the hospital room with some pictures and things we had brought. My favorite was a handlettered print our friend Christy made with a quote from my final birthday email from my dad: “Your spirit remains indomitable.” Looking at that helped me feel more indomitable and less scared. Seeing friends definitely helped. One made a handlettered sign that we added to the wall of awesome to keep up my spirits. Do not underestimate what it means to have someone make you laugh when you’re struggling.
Friday wasn’t too bad, although as the day went on I got more tired and developed less and less of an appetite. I also had a near accident with the IV stand. See, it has wheels to make it easy to move it around. However, the restroom has a slanted floor with a drain in it. That slant combined with wheels that don’t have locks led to me lunging for the IV at one point in fear that it would roll too far and pull on the tubes attached to my chest!
Saturday was when the nausea started to really hit. It was just about 7 a.m. (I happened to glance at my phone). Jarrod and I were talking and I suddenly almost doubled over with nausea. Despite the medical team’s best efforts, the nausea didn’t abate at all until that evening. Our friend Annie visited on Saturday and essentially read funny internet essays to me while I dozed in and out of consciousness feeling miserable. I felt a little better in the evening and was able to take Communion when Jarrod’s old teaching parish pastor visited. He has a parish in Towson, just outside Baltimore, and was one of the pastors who helped celebrate our wedding, so it was good to see him, and felt very healing to take Eucharist. I also got to Facetime with my Grandpa while my two-year-old nephew visited him in Indiana which was a total blast and completely lifted my spirits.
It was good that it did because I soon felt nauseus again and sleepy. Despite going to bed early, I still felt exhausted and super nauseated on Sunday. Even when we went home, I felt gross. That continued through Monday when all I could stand to eat was raisin bread. Tuesday I got very brave and added peanut butter banana smoothies that Jarrod makes and are super soothing to my stomach, as well as high in the protein needed post-chemo. I still wasn’t feeling great, but was getting progressively better until Thursday evening when (as expected from my neulasta shot) my joints and bones started to ache so I had to start taking my oxycodene again. That continued through Friday, but at least the oxy kept the pain pretty manageable. My only other awful side effect was increasingly bad heartburn that finally lead to a recreation of an exorcism and Jarrod calling the on-call line to ask for advice. They were able to suggest an OTC that we hadn’t tried. Jarrod ran to the pharmacy two blocks away, picked it up, and by the next morning (after an uncomfortable night spent literally sleeping sitting upright) I felt better for the first time in days.
Saturday evening I felt good enough that I planned to go to church the following morning but that went out the window completely when I woke up at 4 a.m. on Sunday with excruciating pain throughout my entire jawbone. I took meds, grabbed an ice pack, and managed to fall back asleep again for a bit but woke up again in horrible pain around 7 — well before my oxy should have worn off. Jarrod called the on-call line where they seemed stumped, but suggested doubling my oxy and calling back on Monday if I was still in pain. Well, doubling the pain meds didn’t do a darn thing and I had a miserable day. The pain finally abated a tiny bit in the late afternoon — enough for me to see my nephew which was wonderful. It did mean that all I could eat that day was smoothies and a milkshake. I added soup on Monday when the pain had gone down a bit and I could fit a spoon in my mouth without crying. Tuesday we got really brave and added super soft mac and cheese. I didn’t really eat solid food until Thursday. I’m hoping that side effect does not make an appearance this round!
Friday of that week (so this past Friday) we spent the day at Hopkins talking with lots of doctors, nurses, and even a pharmacist. We made plans to adjust things and add a new medication for this round that should help the nausea. No one there really had a good explanation for the jawbone pain other than “it’s not dental” and “maybe the neulasta?” My accupuncturist said that it might be related to the nausea and heartburn I’d experienced since, if I understood her right, if the digestive system is unsettled enough that can lead to intense heat which can be experienced as pain along a meridian that affects the jawbone. So, hopefully now that we have a better plan for my nausea and heartburn, those will be under control, and I won’t have the excruciating jawbone pain.
That said, I’m still really nervous about tomorrow (and not just because the bed still isn’t a 100% guarantee) and the coming days. I’ll keep saying my prayers, remembering how much my family and friends believe in me, watching MLP: Friendship is Magic when I’m miserable, and reading good books when I can focus. I think that’s essentially taking the next right step and trusting in God. If not, I’ll pretend that it is.
I can’t believe it’s been two weeks since my last update. They weren’t kidding when they said that these chemo meds would be much more toxic than the ones I was on in 2015 — the extreme levelling up of the side effects alone is proof of that. I’ll write more soon about the actual chemo and side effects (I’ve even started drafting that post!), but it is Ash Wednesday so I’ll go for the timely post and some of my thoughts on that.
First, I encourage you to read “For Sisters With Nothing Left To Give Up For Lent” by Candice Benbow. Although I’m not the target demographic, Ms. Benbow’s words moved me and made me think that maybe finding ways to embrace the resurrection during Lent wouldn’t be a sacrilege, but an active good that God might be encouraging me toward.
You know how I mentioned side effects? Yeah, they’ve been seriously awful and draining. Those side effects have included literally days of nausea and seasickness so bad all I could do was close my eyes, as well as more than 24 hours of excruciating pain throughout my entire jawbone so bad that, even with my dose of oxycodene doubled to 10mg, an ice pack around my face, and literal numbing gel rubbed on my gums, I was still rating the pain higher than I’ve rated post-surgical abdominal pain (oh, and 3 days later, I still can’t eat anything that requires actual chewing), plus others like insomnia, hellacious heartburn leading to exorcist imitations, and the expected bone pain that was mostly managed by the oxycodene.
You know the end result of all those side effects? I’m fucking tired. Note, I am not looking for advice or solutions or answers for those symptoms. My doctors understand and encourage complementary medicine. We are discussing ways to cope or avoid issues. Every cancer and every chemo is different. What might help Susie, could kill Bethany. I’m sharing because I think it’s important to share and because it relates to my thoughts on Ash Wednesday and Lent.
In addition to those side effects, there have been times I would have given damn near anything to call my dad. It is not okay that he’s not here for me to call and talk to when I’m miserable. I do not understand why God would allow my dad to die less than a year before my mom has to watch her youngest go through this. She shouldn’t be alone. Yes, she’s strong, but I know that Dad and she got each other through the last time I had chemo. I know life’s not fair, but right now it seems horribly unfair and awful to go through this without Dad.
Plus on top of all of the personal stuff, there’s the horror show that is the United States right now where, just as a cherry on the shit sundae, a literal Hitler Nazi program was announced by our president and people actually applauded (VOICES is a lot like a program that tracked and publicized crimes attributed to Jewish people in an effort to whip up anti-semiticism so no one would mind when the govt started killing them, in summary). That infurirates me. Every single damn day horrible things are happening and the only people who seem to be speaking up about it are those of us who tried to prevent this dumpster fire in the first place.
Then, because of all that, people are feeling emboldened to be violent, racist, horrible assholes. Bomb threats are being called into JCCs all across this country. A friend is seeing her student, who describes himself as “a young brown man,” has experienced more harassment and hassling from police and others in their town since November than in his entire life before then. He’s not the only one, but he’s the one who said something to my friend. It’s heartbreaking and wrong.
I think I’d be significantly less frustrated if people who I know voted differently were also sharing on Facebook about the Nigerian man who was detained and asked to answer computer science questions because a CBP official thought he didn’t look like a software engineer or how wrong it is that CBP was checking identifications of passengers disembarking from a domestic flight, or the insanity of associating HBCUs with “school choice.” But they’re not, and that adds to this impression that the world is burning around me because not all of those who people who voted that way are bad people. Many of those ones who I know are good, decent people who were angy or felt like they had missed out. They’re people who I don’t think I’m wrong to expect that they be outraged over Muslim bans or human rights abuses.
So, physically, emotionally, and spiritually I just feel spent. It’s the start of Lent. I’m writing this before I even get my ashes (we’re going to an evening service), and the thought of trying to give something up for Lent? The thought of spending 40 days thinking on the idea that we are dust and to dust we’ll return? I’m really well aware of my mortality and the ashes seem like one can taste them in the air.
However, focusing on the life part? That intrigues me and I find myself waking up a little for that. Maybe I need to focus on the first part — that we come from ashes. So yes, things are ash and awful right now, but good can rise up out of those ashes. Despite the personal and political awfulness that is going on, I have to believe that we can follow Christ into resurrection and new life.
In the Stations of the Cross there are good people like Veronica, the woman who Tradition says wiped Jesus’s face to soothe him. In the midst of Jesus’s suffering, there was kindness. Ultimately, there was new life. In the midst of my personal suffering, there is a bounty of kindness. Perhaps my job is to share that kindness with the world.
I woke up this morning and realized that I could either be a total grump and annoyed, or I could try to listen to Monty Python and look on the bright side. I’m sure any of you who know me can guess what my brain insisted on attempting. It hasn’t been a total success, but I’ve at least had laughter and joy today rather than just crabbiness, so I’ll call it a win for now.
The reason for the grumpiness is uncertainty. I’m an impatient person who is really bad with uncertainty. I like itineraries and knowing exactly where to be and when, as well as what exactly to expect. I can handle having zero plans, but I am awful at “well, it should be A, but we won’t really know so you’ll just have to wait for the Go/No Go” (yes, we saw Hidden Figures yesterday. It was amazing. If you haven’t seen it, you should go see it as soon as you possibly can, like today).
I’m supposed to start inpatient chemo today. However, Monday, at 4am before my surgery, we saw an email from my oncologist in response to our Sunday email asking for details about Wednesday. It said that we should get a call Tuesday night about Wednesday bed availability and then we’d get a call some time Wednesday confirming availability and telling us to go in. Also, they couldn’t guarantee availability in advance of Wednesday, so I might get pushed back a day. That was frustrating and weird and I tried not to panic about it before my port surgery.
Last night at 8 we got a call from a nurse telling us that three patients didn’t check out, but it was still likely we’d get an available bed on Wednesday, but just to wait for the call. We pushed for a time and were told that the nurse on Wednesday would review discharges around 1pm and call us sometime after 2pm. I’m writing this at about quarter to 3pm. I asked for a number to call if we hadn’t heard anything by 3pm because I am really bad at waiting, especially for something like this.
I’d like to just get to Hopkins, get settled into my room, and start the darn chemo so that I know that if the sarcomas are going to be reduced in size or paused, that will happen as soon as possible. However, I’m trying to not be grumpy. Toby at least was really happy that I wasn’t leaving immediately this morning.
I tried to see this morning as reprieve rather than a test of my patience. I shouldn’t have sushi once I’m immunocompromised so we did lunch at Sushi Jin — our favorite sushi place with some nontraditional rolls that we in our American fusion sort of way love (my favorite is one they call a lobster lasagna with cooked lobster in a sweet sauce topped with scallions on top of an avocado roll — it’s decadent and nontraditional, but I love it).
Of course, I’m still me, so even as determined as I am to see it as a reprieve, I’m still frustrated and annoyed at having to wait to even find out if I’m definitely heading to Hopkins. It doesn’t help that I’m still sore from Monday’s port surgery. It was a success, but it looks like I got hit with a baseball and raising my right arm to shoulder height causes me to whimper in pain.
Honestly, what’s helping the most is seeing the incredible response to Third Space Wellness and Jonna‘s Community Wellness Fund to collect funds to cover acupuncture, massage, yoga, and other self care for Jarrod and me over the course of my treatment. My doctors have strongly urged it for our health because cancer treatment is awful and hard both for the patient and her partner/caretaker. I honestly am not sure if I would handle taking care of Jarrod with as much grace as he’s handled taking care of me.
Even more than the money that’s been raised, I’ve been genuinely moved by what people have written. I’ll probably explore it more thoroughly in another post. However, the short summary is that reading what people have written has made me start to consider (and maybe even believe) that I might be what it is that I’ve been trying to be. Apologies if that doesn’t make sense, I’ll explore it more thoroughly in another post. I’ll also write one about why I’m seriously thinking of sending a thank you letter to the team behind The Flash (actors, writers, etc) because one character’s storyline this season is not only hitting close to home for me, but helping me to process and cope.
Edit: Less than 30 minutes after posting this, we learned that a bed will open up for me this evening a little after 5. So, I will definitely be starting my inpatient chemo at Hopkins this evening! It feels so weird to cheer for pumping my veins full of toxins, but the sooner we start, the sooner we have a chance at making me healthy.