Courage

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.

Grateful for the Good

~ Bethany ~ 6 Comments
This past weekend Jarrod and I were lucky enough to go to a retreat for couples affected by gynecologic cancers. It was an amazing weekend and we connected with some incredible couples. I’ll write more about the experience later, but for now, I want to say that it felt like exactly what we needed. It also made it easier this morning to remember what was two years ago and what was three years ago.
 
Two years ago today we learned that my cancer had come back for the first time. However, instead of focusing on the pain and heartache of that day, I remembered the good things. I remembered our pastor ducking out of a celebration of her wife’s installment at her new parish to talk and pray with us. I remembered Jarrod driving me to a beach near that church so I could sit on the sand when I called my sister and mom to tell them. The ocean and the sand grounded me when I told them the news.
 
Three years ago today was my first ever chemotherapy treatment. It was a long day with a lot of suck. However, I was able to focus on the great view I had out my window and how diligent Jarrod was in taking notes during chemo class. Plus, a lot of people sent cute animals or other forms of encouragement so I was surrounded by love that day.
Jarrod sitting in a chair, taking notes at chemo class
 
They’re not necessarily happy anniversaries, but there were good parts of those crappy days and I feel more able, because of this weekend, to not let the awful parts overshadow the good.
 
I’m still here. I’m still here three years after starting chemotherapy and two years after learning my cancer had returned. I’ve had some awful moments in those years, but I’ve also had so many glorious and wonderful moments full of humor, love, kindness, and joy. Rather than focusing on my anger over the awful, I think I’ll focus on gratitude for the good.

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.

Unlikely, But Possible

~ Bethany ~ 4 Comments

I saw my lead oncologist today to learn the results of yesterday’s scan, as well as what the next steps are.

TL;DR We have a plan, the results are a bit unknown, but it’s got a chance better than that of the proverbial hellish snowball, so I’m hopeful.

So, the scan showed some mixed results. Some tumors grew slowly or were stable, a few grew relatively a lot. Like tripled in size if I understand the math right. That’s kind of crappy. However! There are things we can do!

The very first thing that we’ll do is that I’ll start taking a blood pressure medication that has been shown, when taken alongside other cancer medications, to be helpful in restricting growth of sarcomas. Restricting growth is good. Essentially it somehow makes it harder for the sarcoma to grow blood vessels and get enough blood to grow. It can have some side effects so I’m supposed to be vigilant about actually using my asthma inhaler and letting my oncologist know if I start to have any trouble breathing and/or I feel like I’m breathing through soup (you know, when it’s not crazy insanely muggy out). That’s propranolol — Jarrod and I are both amused that it ends in lol.

The second thing is likely more stereotactic radiation on the biggest tumor. I’ll learn more about that Tuesday.

The third is that in three to five weeks, I’ll stop taking my chemo pills and start on Keytruda infusions once a week every three weeks. There are some possible serious side effects, but nausea and fatigue aren’t likely, so that’s kind of cool. There’s not a lot of evidence for how sarcomas respond to Keytruda. We need more research.

The studies that have been done have had very few people, but at least a few people have had a complete response and gone into remission. So, remission is still Highly Unlikely, but it’s possible and possible is a very good thing.

Kind of like finding peace and beauty at a hospital.

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.

Have You Read the Vorkosigan Saga?

~ Bethany ~ 4 Comments

I was tagged awhile ago in the 7 books in 7 days thing on Facebook. I couldn’t decide between two favorites for my first book, so I’m counting a series as one book for the purposes of the Facebook challenge.

Also, I’m ignoring the no explanation part because I always want to know why someone loves a book or a series. That is what led to this blog post.

Young Miles and Cordelia’s Honor are both part of the Vorkosigan Saga by Lois McMaster Bujold. Dad introduced me to the series that he and my sister both read. I then introduced Jarrod to it and he tore through them while we were dating. The books range from sweeping space operas through futuristic Regency style romances and into backwoods mysteries.

Cover of Young Miles
Young Miles was the book I chose as the subject for my college entrance essay on an important book in my life. In retrospect, I’m impressed both that neither of my parents tried to get me to write about a more traditional “Important” tome, also that Dr. Colella didn’t say anything odd about an applicant to his brand new honors program writing about a genre space opera-style book. I wonder if the old computer I wrote it on still turns on or if there’s a copy in the old house anywhere. It was probably a super pompous essay, though I remember pouring my idealistic young heart into it. I also wonder where my copy went. I lost it years ago and assumed Dad had it, but I haven’t come across it in his books yet.

Cover of Cordelia's Honor

Cordelia’s Honor is home to some of my favorite quotes about challenges and life. One particular quote was important to me pre-cancer and helped me embrace the heart-wrench of seeing fosters move to new homes after I’d helped them. The quote has become only more dear as I’ve undergone treatments and side effects that can range from uncomfortable to tear-inducing (and as I’ve gotten more neighborly with my own mortality) is:

“Being dead is quite painless. Pain, like time, is going to come on regardless. Question is, what glorious moments can you win from life in addition to the pain?”

Glory can be holding my baby niece, hearing my nephew laugh, finishing a 5k to raise money to help others with cancer (plus myself), writing advocacy letters with friends, visiting lawmakers to advocate for young adult cancer patients, making someone I love smile, holding Jarrod’s hand, and even simply realizing what I’ve survived. Those are the glorious moments for which I’ll undergo pain, if not gladly or stoically, at least repeatedly and with hope.

Three Years of Friendship

~ Bethany ~ 6 Comments

Three years ago Jarrod came with me to what we believed was a routine post-surgical follow-up appointment.

It wasn’t routine. My surgeon gently informed me that the mass they had removed was not a benign fibroid, but a cancerous growth.

I remember his words mushing together into the background roar you hear standing near the ocean. I tried to take notes, but I couldn’t focus. They had sent the mass to another lab for a second opinion, but I needed to see an oncologist soon.

I remember thinking my doctor looked so sad, and being grateful for the shared emotion.

The day is fragmented in my memory. I have a memory of literally calling Laura from the parking garage. I texted Tiffany that I’d be late coming back online to work and she kindly told me to take all the time I needed. We made an appointment with an oncologist before we had gone a block. I texted Jennifer Gerres because she was from SAA, knew what cancer was like, and would help me. That’s what I remember thinking, SAA girls are there for each other. I asked Dad if we could do a conference call with Mom, as I didn’t think I could tell her alone without collapsing into tears. It was a surreal conference call. Quinn helped in ways that I honestly believe are why I found my way to Hopkins and am alive today.

Then we knew we needed our friends because we were scared and friends are how you cope with huge monsters. Buffy was always more fierce when she embraced her friends.

So, in the age of social media we reached out via Facebook. Friends showed up and embraced us and cheered us and assured us we were not alone.

I will always be grateful for that night. It has powered me through these years in ways for which I cannot find words.

Thank you to everyone who has been with us, in person and online, and helping us to fight and stay as sane as possible.

We love you and we thank you.

Anyone who thinks friendship isn’t magic hasn’t fought cancer in Silver Spring.

Last Week’s Results — In GIFs!

~ Bethany ~ 1 Comment

Last week’s scan was mixed good news and bad news. My feelings, needless to say (I hope needless), are complicated and a mix of happy, anger, frustration, sadness, and hope. Writing this was not easy so I decided to express myself via gifs. Because a good gif is never wrong.

Let’s go with the good news first. The radiation helped!

 

The team aimed at my two largest tumors. They first targeted one in my lungs, then one in my abdomen. The irradiated tumor in my lungs noticeably shrunk. That’s awesome. The other one is at least stable and might still shrink by the time I have my next scan. Radiation can take awhile to see the full effects. In addition, some of my sarcomas are stable and don’t seem to have grown. Stable with tumors, like with mental health, is a good thing. For someone with aggressive stage 4 cancer? It’s a very good thing.

The not-so-good news? Some grew and an additional sarcoma has shown up.

Yes, I’m angry about this. I’m pretty sure anger is normal though.

So, what does this all mean? Well, in the short term it means that I’m sticking with the same chemo pill until my next scan in July.  We are playing with the dose to try to mitigate some of the side effects. It’s not cool to lose 48 hours or so to uncontrollable projectile nausea every 2 weeks. I did ask my doctor about going to one of my local dispensaries. He’s not opposed to the idea, but because the hospital receives federal funding, he can’t prescribe it himself without putting that funding in jeopardy. So, the workaround for a government terrified of pot due to the GOP and uninformed lobbyists is that I go to the dispensary myself and ask about local doctors with whom they work, then see one of those doctors, present my case history, and I’ll likely walk out with a prescription for medical marijuana.

 

No, you’re not the only one thinking this is really dumb and a waste of medical resources and my own spoons. We need to get our federal government to realize that pot is not something to be feared (especially prescription pot, i.e. doctor-supervised!) just because we have had a terrible “war on drugs” for so long. Like, wouldn’t it be better if it were my main oncologist prescribing the pot, not some random doctor I’m establishing appointments and a relationship with solely for the purpose of reducing my nausea in a way that might have fewer side effects than the next step up in anti-nausea pharmaceuticals? You’d think so.

So where does that leave me? Well, we talked about what my likely treatment options will be in July if there’s more growth. For now though, I’m just living with some hope, some sadness, a great deal of gratitude for my cat (purring alongside me while I type this), and a huge appreciation of how helpful books and television are for avoiding reality.

 

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.

Some Days I Want To Imitate My Cat

~ Bethany ~ 2 Comments

I’m restarting radiation today so Toby’s pose here is particularly apt. On the one hand, he’s adorable and, I believe, knows that his adorableness calms me. On the other hand, my fear and anxiety mean that a not small part of me wants to imitate him and curl up into a ball.

Gray cat, curled into a ball

It’s more focused radiation and fewer sessions this time around. That should mean fewer side effects than last time. However, last time I wasn’t taking chemo pills so I wasn’t already struggling to fight fatigue and do everything I want/need to do.

It’s disturbing to know that beams of stereotactic radiation will be aimed at two spots on my body to try and permanently stabilize my two largest clumps of mutated, out-of-control, turncoat cells. That one of those beams will be aimed at my lungs simply adds to my unease.

However, I trust and like my team of oncologists. I have a fluffy cat who seems to want to comfort me. I have a husband, sister, and friends who are helping me take the next right step, even when it’s hard and scary.

I refuse to give into my cancer. I refuse to believe that stage iv sarcomas won’t be defeated by medical advances and pure stubbornness. So, I must refuse to give into fear. It’s as simple as that, no matter how much I want to imitate my cat.

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
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