Faith

What a Week

~ Bethany ~ 19 Comments

This has been one of the longest weeks I can remember. Sunday my husband and I spent the day and late into the evening with his mom by the hospice bedside of his grandfather. I didn’t know him well, but he was always charming and kind to me. Jarrod adored him and apparently got a lot of his singing talent from the man. As for my mother-in-law, her love for her dad is obvious and deep. It was a long, emotionally trying day for everyone. No one likes to see people they love in physical or emotional pain.

Monday, the plan was to relax, curl up on the couch, and read a good book. Instead when I woke up still coughing I sent messages to my main oncologist as well as the oncologist directly overseeing my Keytruda. I then fell back asleep. I woke up to a call from the cancer triage nurse at Sibley (part of the Johns Hopkins system, and where I’d been receiving Keytruda).

She was concerned about my coughing, and only grew more concerned as she heard how often I had to pause my sentences to catch my breath. She asked if I would be able to come into Sibley and said that she was going to confer with one of the oncologists and call me back. Well, she called back within about 15 minutes and said I needed to come into the emergency department at Sibley and have a battery of tests.

I don’t think I’ve ever readied for the day quite so fast because she kind of put the fear of God into me. She was friendly and everything, but you don’t expect to be told that some coughing means you need a CT scan!

Thankfully I was able to borrow a friend’s car since Jarrod was taking ours to the mechanic due to a pothole from Sunday. I convinced Jarrod that I would be fine driving on my own, it was just some tests, and I’d see him that afternoon.

Yeah, it wasn’t so straightforward.

I got there and got taken back almost immediately. The first time they accessed my port it hurt like the dickens and they couldn’t get any blood return on it. Normally accessing my port doesn’t hurt terribly bad if I’ve had my emla cream on it like I did that morning, so that seemed unusual. Then a second person accessed it and was able to inject saline into the port, but still not get any blood return. They decided to access veins on my hands.

If you know anything about the last times I had my veins directly accessed, I’m sure you can imagine the senseless repetition of “no, no, no, pain, ow, no, no, bad idea, no, no, no” that was my immediate response as I literally curled up on the hospital bed in fear with tears starting to fall as I remembered how much it had hurt last time.

Right hand with gauze near the pinky
It looks small but it hurt like hell.

They really needed the blood. They first accessed my right hand and I sobbed, and I screamed, and I swore, but I got through it. Then, a few hours later, they were able to get blood from my port, but needed blood from an additional spot to check for infection so they accessed my left hand while I again sobbed and screamed and swore while that kind nurse told me about her beloved cat because I asked if she liked animals.

In addition to the CT scan I was given two nebulizer treatments and some saline to ensure I was fully hydrated. The treatments seemed to help a bit, though I was definitely amped up afterward!

Then they started talking about me staying overnight. Apparently, the scan showed a tumor pressing on an airway and so they wanted me to do a walking oxygen test and that would decide if they were going to admit me overnight.

I texted Jarrod and tried really hard to be brave and not scared out of my mind. I’m not actually brave, I’m terrified when I don’t totally understand what’s going on or how to make my body stop struggling.

The results of the test indicated that I should stay overnight. They hooked me up to two iv bags of antibiotics because there could be an infection. They assured me that they were letting Dr. Meyer (my main oncologist) and Dr. Wright (my radiation oncologist at Sibley) know what was going on. Everyone was incredibly kind and helpful to me, even as I was struggling to stay calm and not panic. The room they wheeled me up to was surprisingly huge and thankfully Jarrod showed up shortly after I got there.

Jarrod standing with backpack and bags
Jarrod to the rescue!

Seeing him and getting a hug from him was amazing. I was still scared, but I was significantly calmer and more certain that I could handle whatever might come. He had packed a bag with what we would both need to stay overnight and even coordinated with my sister to have delicious Booeymonger sandwiches delivered. Roasted veggies with cheese always help.

Tuesday we got to meet with one of the oncologists. She was great, but I still ended up sobbing at her. Not only did I have a tumor pressing on an airway, but all the tumors in my lungs had grown significantly since July, plus I had about 20 new tumors all over 1cm each in my liver. Previously my liver did not have any noticeable tumors.

I cried and hiccupped and sobbed. If you’ve never sobbed with only one working lung, I should let you know that it is really uncomfortable and leads to a lot of coughing. I do not recommend it.

Thankfully my sister and her amazing mother-in-law brought lunch and visited with us. I gave my sister a huge hug and told her what we knew and then added that, as much as I look forward to seeing my dad, I don’t want to see him any time soon. I’m not ready for that. In the immortal words of Dr. Who, “I don’t want to go.” Laura was wonderful about cheering me and making me feel more determined. Still scared, but determined. I come from two families of incredibly strong, kickass women. I can be strong. I am not done fighting.

I spoke with a pulmonary specialist, Dr. Elizabeth who was fantastic. She explained what the options were for what could be done to help me breathe. She talked about the whole huddle of doctors who were discussing my care and figuring out what was best for me and my specific needs. Plus, she was fantastic and human and kind. And, when she saw the book I was reading her response “Oh, I loved that book!” Shallow, maybe, but it made me feel like a real person not just a tumor-filled body.

My main oncologist called while Dr. Elizabeth was there and talked with us and assured me that he was up-to-date with what was happening. He assured me when I asked that he wasn’t giving up hope, just that things were going to be harder from here on out, and that a clinical trial would likely be my best option if I got into a good one. We made plans for me to see him as soon as possible after I was discharged so that we could figure out my next treatment steps.

Our pastor and friend, Amanda, also came. Praying with her and having Eucharist, as well as simply talking with her was huge. Amanda has been praying with me since my first surgery three years ago. Having her visit meant more to me than I know how to say. I was also incredibly touched that she assured me that the other two pastors at my parish were praying for me and knew that I was in the hospital.

Another awesome visitor was a woman who had been on the gynecologic cancer retreat with Jarrod and me. Getting a hug from her was amazing, plus she remembered my love of cats and brought me an adorable kitty ornament that made me grin.

By Tuesday evening we had been informed that they wanted to keep me in the hospital overnight. They wanted to keep an eye on my oxygen levels, keep giving me daily antibiotics through IVs, and make sure I stabilized a bit. That was fine. Sibley thankfully has pretty decent sofabeds so Jarrod was able to get a decent amount of rest. He did drive home to grab more clothes for the two of us, plus feed our cat and take some photos for me.

Wednesday we found out that there was a chance they might want to keep me in the hospital until Friday. Apparently they were trying to see when they could do a procedure to improve my breathing. If they could do it on Friday, they’d keep me in the hospital until then. If it was Monday, they’d have me go home and I’d do the procedure as an outpatient.

I was near tears at that. Everyone was nice and it was as restful as a hospital stay can be, but I just wanted my bed and, more importantly, my cat. I couldn’t take deep breaths to calm down, so I wanted to sit near my cat and hear him purr calmness at me. I understood the reasoning, but it was still a blow and I was hoping that I would get to go home.

We also were visited by a patient care coordinator who had been involved with the retreat and talking with her helped. Plus, she said to just text her when it was time for chapel (I’d gotten permission to attend) and she’d get me a wheelchair so I could get downstairs without exhausting myself.

We then chatted with an oncology social worker who was fantastic. She even suggested that I bring the disability paperwork that’s been giving me so much trouble in and she could help with that. I did also promise her that I would soon see my therapist since I ended up babbling way more to her about my fears and guilt than I meant to. I blame being really tired and the bad news about my tumors bringing that guilt and feeling that I haven’t done enough way high up to the surface.

Chapel helped. The priest didn’t give a great homily, but the ritual (even if I couldn’t do all the standing and kneeling), the readings, and the Eucharist helped in a way that I can’t put into words. I was still terrified, but I was reminded of my faith. I had also called my secondary parish. Lately Jarrod and I have been attending a Wednesday service at another Episcopal church near us. The pastor and deacon know about my cancer and pray over me when I’m there. I was really sad to not be going to their service that day and I really wanted to ask the small congregation that I knew would be there to pray for me. So, I got voicemail and left a very abbreviated “I’m in the hospital so we won’t be at service, but there are some problems and I would really appreciate if you could include me in the intentions at service today.” I found out Thursday that they did mention me, and strangely appreciated me asking for the prayers.

They had me do another walking oxygen test. I passed the test part in that my oxygen levels stayed up, however I also needed a chair quickly because my heart rate spiked like mad and I got super dizzy. Stupid only one fully inflating lung. The nurses who helped me back to my room were lovely though and made sure to say that they appreciated my hoodie. It was from Third Space Wellness and says “Life is a beautiful sh*tshow.” It accurately describes my view on life. I also got a stern talking to about stopping before I was dizzy rather than grabbing onto the wall as I got dizzy.

Well, the prayers must have done something because I was informed Wednesday afternoon that I was going home! I was thrilled. I got a thick packet of discharge instructions, prescriptions for antibiotics as well as steroids (to help my breathing), and a reminder to not overdo it and to be careful to sit when I got tired rather than trying to push through it. I guess it’s not always good to try to overachieve?

Before I had even been discharged I had called and emailed to set up an appointment with my main oncologist. He was kind enough to fit me in today, Friday, despite a completely full schedule. I think he gave up his lunch hour. I’m not sure how I ended up with really great medical people.

As soon as we got home, Toby started to purr and did not stop. My friend Quinn brought over some of her incredible brownies and encouraged Jarrod to take some time to himself since he had also had a crazy few days and needed to center himself. He apparently really enjoyed just getting to talk about football at our neighborhood pub and focus on sports rather than life or death (who would have guessed?!) Talking with Quinn was really good and helped me feel calmer.

Gray cat on Spinning Silver book
Toby stayed very close

It was so good to sleep in my own bed that night with Toby curled up at my feet just purring his own happiness at having his people back. That is a joy that will never get old.

Thursday I found out that my procedure was scheduled for Monday morning and that they seemed confident they would be able to make me more comfortable. I started telling a few people what was going on, but it still seemed surreal and it was hard to tell. Telling people made it feel more real when I was still working up the courage to not be in denial.

Friday’s doctor appointment made it real. Dr. Meyer spent ages talking with us and listening to every question I had, never rushing me. He described exactly what was going on with my scans, showed them to me slide by slide so that I could see exactly what was happening. Not every patient wants that, but it always helps me to visualize what’s going on.

CT scan images

He then suggested the plan that he thought, for now, was best for me. I’ll be on two drugs — one I’ve had before and one I haven’t. The drugs are gemcytomine and dacarbazine. The side effects will be similar to chemos in the past, but the nausea might be worse. Plus, it’ll be every other week so there will be less recovery time in between.

I’m scared, I’m holding onto hope because I can’t imagine not fighting to believe that I’ll get my miracle. I have the right genetic marker for a trial at NIH, so I just have to wait a few weeks while they review slides of my tumor to see if I’m fully right for the trial. Who knows what’s around the corner?

Dad always believed that there could be something good just waiting around the corner. My job is to get to that corner, even if I’m bald, nauseous, and suffering from joint pain. I’m lucky enough to have friends who have my back and will help me get there. Their kindness moves me to tears. I hope I can show at least half as much love as they have shown me.

Now, today, that love needs to go to my husband and his mom. My husband’s grandfather passed away last night. Selfishly I hope the funeral home is flexible and allows us to schedule the service for next week to balance giving out-of-town relatives time to come in and (selfishly) me time to be less nauseous and pain-filled after this coming week’s chemo and neulasta shot. I love Jarrod and Patti. I want to be there to support them. Love is all I have to give.

C Is For Cat, Not Cancer

~ Bethany ~ 3 Comments

Last week Jarrod and I spent our Friday at NIH. We were filling out paperwork and getting my blood drawn to see if I qualify for an immunotherapy trial that is actually including some sarcoma patients. It’s exciting, and futuristic, and scary, and hope-giving all at the same time.

Basically, the trial is for cancer patients with a particular type of genetic marker. It involves removing some of the patient’s white blood cells, modifying them to go after this marker on the tumors and growing a lot of these new cells in a lab, removing the rest of the patient’s white blood cells, then injecting the lab-grown cells into the patient. It would involve a one-month hospital stay. The science is really cool and the results from the first time they tried this were impressive — about 50% of the patients had their tumors shrink! That’s a really good percentage. This time around they’ve tweaked how they produce the new cells which they think will make them even more effective at shrinking tumors. While the idea of having my white blood cells removed and spending a month in the hospital is scary as heck, the hope that this treatment offers is huge. It could be my miracle if Keytruda isn’t (side note — the scan that will show if the Keytruda is doing anything is in roughly 6 weeks now if my math is correct).

I’ll find out in about two weeks if my blood showed the marker that is needed for the trial. If it does, I’ll be considered for the trial though it’s not a guarantee I’ll be chosen for it. However, regardless of whether or not I have the marker, my information and records will be shared with NIH in case they have any trials for which I’m suited. So, even if the Keytruda doesn’t work and I also don’t get chosen for this trial, there’s still hope that I might get some awesome new trial at some point. Besides, there are other treatment plans that my oncologist is holding in reserve.

I admit, I’m hoping I have the marker.

Despite my efforts to appear calm, I was anxious that day. However, walking into the exam room for my vitals made me laugh and feel okay.
Poster showing a calm cat above the words C is for Cat
It might sound silly, but seeing this poster made me remember that God is walking through this with me, helping make sure that there are good and kind people to help me keep taking the next right steps (thank you, Quinn!), plus occasional cats to make me smile. Sometimes we just need something small to remind us of our faith. My faith tells me that even when I struggle to be brave or calm, my God understands human pain and suffering and walks with me. I know that’s not everyone’s faith and I’m not trying to proselytize (I’m actually super opposed to forcing one’s religious beliefs on other people), but that’s my faith and it brings me comfort and helps me pretend to be brave.

I don’t know if the Keytruda will work, if I’ll get into the trial, or any of what’s coming for me cancer-wise. I do know even when I’m scared and anxious, I’m not alone, even sometimes I need a cat poster to remind me of that.

Also C is totally for “Cat” and not “Cancer” in the ABC book in my head.

Little Things Help

~ Bethany ~ 4 Comments

A short story about how little things help.

I’m headed to Sibley this morning to map the sarcoma that tripled in size in preparation for radiation. Mapping isn’t painful but it is uncomfortable and highly undignified. This sarcoma isn’t in my lungs, thankfully. It’s in my breast tissue — which is far preferable. If a tumor has to triple in size, it may as well be in a useless area of my body. It does mean the position for mapping will be awkward, especially for someone as physically modest as I am. 😕 Plus, although I might not need more tattoos, they’re not sure. If I do need them, I find those to hurt!

All of this, plus struggling with what it means to now be the patient trying things outside the box as it were (Keytruda only has a few studies with sarcomas so it’s not an official FDA approved use), meant it was a tough morning. My anxiety and sadness were super high and a physical weight on my chest.

Normally you wouldn’t think Twitter would be calming, but it opened up to #SlateSpeak tweets from ministers talking about grief. One quoted a favorite saying about grief being an expression of love. They hit me hard and I sobbed. I read a blog post by a deacon about living in a liminal space and I sobbed more.

It was healing though. It was good to cry and express my fears for the future and my grief over not being healthy and whole to be a better more giving (less temperamental) wife, daughter, sister  and friend. I then remembered a Deanna Troi line from  Star Trek episode we watched yesterday: “It’s not false hope, just hope.”

I started to calm and Jarrod came out from his ablutions and brought me tea. I calmed down more as the scent of freezer biscuits wafted through our home while he cut up peaches to serve alongside with cream. A friend I look up to tweeted back to me that she doesn’t believe our worth is in what we accomplish. That helped even more.

On a whim I looked up the stable where I used to ride and saw a Groupon for a 2 person semi-private hour lesson for less than $90. Not that we regularly drop that on a day’s entertainment but horseback riding has been on my mind intensely lately. I’m even considering applying for a grant for sarcoma patients to find their happy place and saying my happy place is on a horse.

We bought the Groupon.

Little things that were not created for calming me down helped me this morning. Don’t underestimate how you might be making a world of difference for someone.

All The Fears

~ Bethany ~ 2 Comments

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

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

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

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

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

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

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

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

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

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

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

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

The Beauty and the Terror

~ Bethany ~ 1 Comment

Sometimes going through email can lead to more than simply the satisfaction of tackling an item on my to-do list. In the course of celebrating the birth of my niece, being violently ill last week from my meds, trying to fit in last minute prep walks for the 5k, and then actually completing the 5k — life got a little busy. So I decided to tackle my emails this morning.

I came across a Richard Rohr Meditations email. It included a poem by Rainer Maria Rilke, translated by Joanna Macy and Anita Barrows from the original German. He suggested reading it aloud slowly and musically. I tried that, quietly but otherwise following his directions, and something in it spoke to me.

God speaks to each of us as he makes us,
then walks with us silently out of the night.

These are the words we dimly hear:

You, sent out beyond your recall,
go to the limits of your longing.
Embody me.

Flare up like flame
and make big shadows I can move in.

Let everything happen to you: beauty and terror.
Just keep going. No feeling is final.
Don’t let yourself lose me.

Nearby is the country they call life.
You will know it by its seriousness.

Give me your hand.

a hand lighting a candle
Photo Credit: http://bit.ly/2x6PHnF

I don’t know if I flare up like a flame or embody God. While I do try, much of the time at least, to act as a part of God, there are plenty of times when my humanity asserts itself. Sometimes it’s in selfish behavior, but other times it’s me protecting my human self or simply not being able to do what might be defined as good and godly.

I’m not God. I need to have protective behaviors and I need to have boundaries and barriers to protect my sanity and my health. I do not have infinite patience or strength. I may be filled with God’s love and generally try to live in that love and show it to others, but I am human and also need to receive the love of my friends and family. I need love to continue each day, moving forward into the unknown, and living in the vivid uncertainty that is living with stage 4 aggressive rare cancer. Thankfully I have wonderful people who love me and help me keep going.

Three lines stood out to me and have stuck in my head all day. My thoughts on those lines aren’t long or profound, but I’ll share them in case they’re of help to anyone else struggling with the coexistence of beauty and terror in their life.

Let everything happen to you: beauty and terror.
Just keep going. No feeling is final.
Don’t let yourself lose me.

My team was literally the last to cross the finish line at the 5k on Sunday, but we finished. Two members of the team had crossed that line earlier. They greeted us with water bottles and advice on the best bagels. I was surrounded by hopeful love. That was beauty.

I have a scan tomorrow. I’ll learn the results a few hours after the scan and then discuss the new plan on Friday. That is terror.

I don’t know what the scan will show or what the new plan will be and I doubt that will ever not terrify me. I’m starting to be okay with that though. I have terror, but I also have beauty. Both will always be in my life, regardless of how long or short that life might end up being. I need to simply just keep going and do my best to not lose my faith in the midst of either beauty or terror.

Almost Two Years

~ Bethany ~ 3 Comments

It’s been almost two years. It feels like yesterday. It feels like forever ago. I remember getting up from my desk chair, suddenly knowing there was a horrible reason that Mom was calling. I remember almost falling down to the ground, sliding against the ottoman, crying, wailing with a sound that made Toby run out of the room in fear. I remember trying to be strong, trying to channel Dad himself who would have been taking care of people. I remember Jarrod holding me, while trying to help that impulse to help. I kept freezing up though, because my brain would start insisting that nope, no, no, no, no, no, nope, this wasn’t real, this wasn’t real. Dad was going to magically be okay. Miracles could happen. If Lazarus could be awoken, so could Dad.

It was the worst day of my life. Still is. It’s worse than any bad cancer news — this knowledge that I can’t call Dad on a bad day or share good news or a joke with him. I can’t ask him for help or make him laugh. Not in the way that I want. I know, there are beliefs about taking time to sit with the spirits of the dead and I believe that my dad is in Heaven and that Heaven must involve laughter. I believe that my dad isn’t really gone, so long as I remember his lessons and his love. All the same, there aren’t any telephones to Heaven in my belief system where I can hear Dad’s voice and his perfect laughter that I could pick out of a crowd from a young age.

My dad

After Dad died, even when my cancer came back, coping with the emotional aspects of cancer seemed less important than trying to deal with my grief. I had made a fair amount of progress coping by the time that radiation started. During that first long stint of radiation, my grief got shelved as though my soul knew that I couldn’t cope with that emotional pain when I just needed to keep putting one foot in front of the other. It meant though that it was waiting, still fresh somehow, when I finished that radiation.

Losing my dad still feels worse than cancer. I miss him, horribly, awfully, and more often than it probably seems. Most of the time I cope with it pretty well according to my therapist. May is tough though. I’ve been avoiding thinking about how to spend the anniversary of his death. It’s been easier to lose myself in great novellas and novels, to push myself to walk 3.2 miles even when my irradiated and chemo-pilled body does not want to do so. It’s easier to cry because I’ve pushed my muscles too much, than because I let myself think about Dad’s death.

I’m still not sure how I’m going to spend the anniversary. I’ve scheduled acupuncture because it helps, and, of all weird selfish things, a haircut. It’s not so much because a scalp massage seems good as that Dad was comically bad at noticing haircuts. So it somehow made a weird kind of sense to me when that was literally the only day my stylist was available before this year’s Stride & Thrive when I’d really like to not have a ducktail.

Maybe I’ll reread a cancer memoir he gave me that a coworker had recommended to him. Maybe I’ll force myself on a hike that morning to try to spur endorphin production. I remember him picking me up and carrying me on hikes as a small child after I’d inevitably tripped and skinned at least one knee. Maybe I’ll binge watch Star Trek or Buffy, or reread Bujold books because those were something special we shared that have helped make me a better person. He did once tell me, “release your inner slayer…” Maybe I’ll ask my neighbors if I can hold their baby because Dad was fantastic with babies and I really don’t want to intrude on my sister and brother-in-law. Maybe we’ll get Mexican carryout, just Jarrod and me so that he’s the only one to see me sob, or maybe we’ll see if friends are available to share margaritas because Dad told me that he was comforted during my cancer because he knew I had the most valuable of treasures — a strong group of friends.

I don’t know. I miss him. I fear that I’m not doing enough to be worthy of being his daughter — that I’m not living up to his memory or being the strong, kind, brave woman he believed I could be. I know I’m lucky though, to have had him as my dad. My friend Rachel told me, after her aunt recalled a happy memory of once meeting him when we spent time together in DC, that he “was the kind of man who made lasting impressions on people he met only briefly,” and she’s right. I wish that more people could have met and known him while he was alive, because he really was fantastic not just as a dad, but as a person. He was kind, and had a good sense of humor. He was generous and fair-minded, but strong enough to be open to change. He believed in equality for all people, and told me that he considered himself a feminist. Leonard Nimoy was one of his heroes. He was deeply religious, but also respected others for their wide variety of beliefs. He often told me that he thought God was either laughing or crying at all the divisions we drew between ourselves.

There’s a quote from my dad that I have as part of a collection of quotes on my desk, sitting right above my laptop screen as I write this. He’s where I think I got my optimism, part of why my stubborn streak refuses to give up hope for more than a day, even when things look bleakest. Seeing his quote reminds me to never give up, because ninth inning rallies are always possible.

I have always found optimism to be a healthy antidote to much of what happens in life. I always think that something nice is just around the corner… and every once in a while, just often enough to keep me going, there is.

The Worst Superpower Ever

~ Bethany ~ 1 Comment

“That sounds like the worst superpower ever!” –my sister making me laugh after I told her how tired radiation had made me, unlike its effects in comic books.

I’m done with radiation, for now at least. I’m already impatient with myself for not recovering faster. Even though intellectually I know that the dosage of radiation was way higher than the last time I did radiation, so therefore the fatigue is still expected despite fewer sessions of radiation overall — my spirit doesn’t seem to know that.

Yeah, that’s currently me. I had my last session on Tuesday. The nurses and techs at Johns Hopkins Sibley Memorial were amazing — kind, skilled, and understanding. They even gave me a certificate of completion with friendly notes from the nurses most involved in my care. It made a very tired Bethany smile.

certificate of completion for finishing my radiation treatments
Yes, that is a note telling me to stop apologizing…

 

I am incredibly grateful to my sister for asking for help for Jarrod and me, and to the friends who took time out of their days to help. Aside from how expensive it would have been to hire a car to take me to and from Sibley on the days when Jarrod had his own appointments elsewhere, as I told a friend, I’m okay falling asleep in a friend’s car or asking a friend to stop their car so I can throw up, but the idea of doing either of those in a Lyft weirdly freaks me out.

I’m still exhausted from the radiation/chemo pill combo. Plus, I’m having trouble sleeping again (yes, I’m doing everything I’m supposed to, including drinking warm nutmeg/vanilla milk). So, that’s not fun. I’m still trying to regain strength and endurance so I can do the 5K part of the Stride & Thrive to raise money to research and treat gynecologic cancers.

Haven’t donated yet? Please consider making a donation. Even the cost of a cup of coffee or wine helps. Don’t believe me? Let’s do some math.

Estimates and Facts

(based on observations in my neighborhood)

  • a cappuccino or latte costs around $5 with a kind tip to the hardworking (hopefully not super racist) barista
  • a glass of wine out with your friends costs $10 with a similar kind tip to the also hardworking waiter
  • many people get at least more than one of these (or similar delights) each week
  • I’ve had 188 views of my blog this month, as of the writing of this post, even though I’ve only published one post in April prior to this one. Let’s pretend that this post will have similar stats.
  • 54 people have donated so far to the fundraiser
Math

Let’s assume that we’ll have 105 unique viewers and that those include all 54 people who have thus far donated. That leaves 51 people. Let’s round that down to 50 to make things easier.

If half of those readers (25) give up one glass of wine (10) and half (25) give up one coffee (5), we’ll raise $375 to help research and treat women with terribly underfunded gynecologic cancers. If half of you readers give up both one wine and one coffee ($375), and just under a quarter (12) give up one wine (10), while the rest (13) give up one coffee (5), we’ll have raised $560! That’s kind of amazing to me!

If you can’t donate now, I do understand. I simply ask that you at least read the common signs and symptoms of gynecologic cancers at the Below the Beltway Penguins page, then share with at least one friend. You never know whose life you might save.

In the Meantime

I’m going to do my best to be worthy of your donations. I lost a lot of endurance and energy during radiation. Pre-radiation, I was able to partially run, partially fast walk a 5k in under an hour. I think my record was 50 minutes though I felt like death afterward. On Wednesday I barely completed a 0.77 mile walk in 20 minutes and felt utterly exhausted by it. Yesterday, I did two 0.7 walks, one in 16 minutes and one in 18 minutes. The 18 minute one included a flight of stairs, but I didn’t feel like death after either walk. I’m hoping to balance patience with pushing myself. As the saying from the Bible goes, “the spirit is willing, but the flesh is weak.”

My spirit is willing and stubbornly determined. It’s also deeply scared about whether or not the radiation worked on my two largest sarcomas. I learn that in about a month. I’m also scared of whether temporarily halving my chemo pill dose allowed the other tumors to grow. Ironically (maybe?) I’m scared of increasing my chemo pill dose back up to its pre-radiation levels. I’m scared of a lot. However, I believe that my spirit can and will help my body recover as quickly as it can and to (slowly) complete that 5K so that I’m worthy of every single donation that has been made. I am amazed that we have raised so much already. It seems surreal that so many people have been so kind and generous. That helps me have courage and it helps me force this tired body to try, but also to allow it the rest that it needs so that I can fight again another day.

Let’s keep fighting. It’s the only way we can win.

Fear of Failing

~ Bethany ~ 5 Comments

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.

Want to help bring about that cure? Donate today. Even the cost of a cup of coffee helps.

Sometimes a Body Lies

~ Bethany ~ 8 Comments

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.

road curving upward through woods toward light
a © 2013 Susanne Nilsson, Flickr | CC-BY-SA | via Wylio

Asking God for a Non-Literal Break

~ Bethany ~ 6 Comments

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.

x-ray of right hand with a break at the base of the 5th metacarpal

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.”

Stronger Than My Body

~ Bethany ~ 2 Comments

Two years ago today I had a scan whose results made me believe that I was essentially cancer free. Of course, oncologists are careful to use the word “remission” instead of “cured,” but to the average patient, remission feels like a sentence has been lifted. It seems like suddenly there are possibilities and futures that you worried were denied to you. For me, I began to lose the fear that had walked beside me ever since learning that what was thought to be a benign fibroid was actually a cancerous tumor with a worrisome prognosis. In retrospect, I wasn’t actually cancer free at all and my life was only going to get more difficult, but I remember that feeling of fear lifting away from me.

Ever since last Friday, I’ve had fear in the back of my head every moment I’ve been awake. The only exception was the hour I spent at Third Space Wellness working one-on-one with my amazing yoga instructor. During that time I felt strong, in the moment, and capable. I did Warrior 3 for the first time in possibly over two years. It was a supported Warrior 3 with blocks, but I did it and I felt so strong as I worked and concentrated on holding the position.

Afterward, once I’d caught and slowed my breath, my instructor asked how it was. “Fun. Really hard, but fun,” I said. After class I told her that it was the first hour in a week where I hadn’t been afraid. I almost cried while telling her that because I wasn’t sure I could explain what a gift that was. I think, from the hug that she gave me, that she understood.

In some ways, fear is familiar to me at this point. Most of the time I’m able to move past it and it’s not as constant a companion as one might expect. Common, yes, but not constant. However this past week, except for during that class, it’s been a constant companion. I’ve been able to sometimes push it down and it hasn’t kept me from laughing or finding joy and hope, but the fear has been a constant companion to every other emotion and moment. It’s caused me to sometimes break down and sob. The other morning I texted a friend who I knew was unlikely to be at work because I could not stop crying long enough to open a bottle of Ativan less than two feet away from me. I did eventually stop crying. I did find the courage to take the next right step and act like a functional adult rather than sit frozen in my bedroom.

I had a scan on Friday, December 29. That scan showed that my sarcomas have grown. It’s only a few millimeters per sarcoma, but any growth is bad. My doctor talked with my husband, sister, and me for about an hour, discussing my options. I tried to be a “proper” adult and take dutiful notes. I was determined to be strong and a “good” patient who takes control of her care. At one point Jarrod reached over and gently took my notebook and pen from me because I was crying too much to really see the page clearly.

We have a plan. To be completely accurate, we have two plans — a plan A and a plan B because plan A depends on what the radiation oncologists think. Plan A would involve me continuing to get Olaratumab (the wonder drug that has given me a great quality of life) in January, plus a week where I’d have four days of radiation with a day off in between each session. The sessions would be an hour long and intensely focused. After returning from our honeymoon, I’d go on a particular daily chemo pill. If radiation doesn’t agree, I’d go on that daily pill in January with hopefully enough time before leaving for Oceana to figure out and minimize all the side effects. Then, I’d take the pills with me to Australia and New Zealand and take them there, stopping them a few days before big energy days such as when we go trail riding in the Blue Mountains.

I’m grateful to still go on my honeymoon. I’m grateful to have the best doctors and to have incredibly supportive family and friends. I’m still hopeful that a miracle (or miraculous breakthrough) will happen. The pill works (keeps stable) about 40-50% of sarcoma patients for 4-5 months if I understood right. At the point where it stops working, I’d go on another treatment. One possible, though very rare side effect, is a hole developing in the lungs. The reason that happens (very very very rarely) is because for a few rare patients in that 40-50%, the drug actually shrinks the sarcomas. So, I’m focusing on that. Not the hole, but the teeny tiny possibility of shrinkage. Maybe this is how I get my miracle.

All that said, I’m scared. The day after the scan Jarrod and I had some friends over (if you’re local and didn’t get invited, it’s not personal, just assume that J and I flaked — we do that a lot lately). It was wonderful to spend most of the evening not thinking about the scan, but it was never far from my mind and even with multiple glasses of wine, fear never left me.

I’m afraid of not being able to be stabilized again. I’m also afraid of the treatments and their side effects. The past few months on Olaratumab have been incredible. I’ve had energy and regrown my eyebrows! I had started to think about Olaratumab as a long-term “new normal” and to be okay with treatment so often because the rest of the time I felt so good.

I’m scared, but I’m trying to be brave. I’m trying to remember that I really do just need to take the next right step. I have the best people and new discoveries are constantly being made. As we were leaving, I asked my doctor for reassurance that I shouldn’t give up hope. “I don’t see any reason not to have hope,” he said. He’s always been honest with me so if that brilliant doctor still has hope, so will I. No matter the odds, I can always choose to have hope. Like Supergirl, I believe in hope.

Crocheted Superbunnygirl and Flashbunny speeding across a chemo window
Superbunnygirl and Flashbunny from Hooked and Loopy

When I told my friend Cyana, she told me that I’m stronger than my body. Apparently it’s something she picked up from a 60-year-old ballerina. No matter what 2018 brings, I am choosing to believe Cyana. I am choosing to believe that I am stronger than my body. I can fight and find strength to endure treatments whether medications or radiation and all the side effects those may bring.

I am afraid, but I have hope. I have stage 4 sarcomas that are growing, but I am stronger than my body. I will have faith.

Dangerously Divine Is Perfect for a Dangerous World

~ Bethany ~ 2 Comments

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.

gray cat with Dangerously Divine ARC
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.

Realistic Stability

~ Bethany ~ 2 Comments

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.

Bay pony with a young Bethany
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.

Courage and Confidence Aren’t Constant, and That’s Okay

~ Bethany ~ 3 Comments

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.

Facebook status about how cat poop might help fight ovarian cancer. My post reads: Admittedly, I didn't have ovarian cancer, but part of me smiled at the idea that a parasite from cats might be the key to one cure for cancer.

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.