Life

Disability Benefits Are Not Easy

~ Bethany ~ 6 Comments

This is quite a long post for me and it’s me blowing off steam and venting about something that frustrates and upsets me. Do not respond telling me not to be frustrated, that it’s just people doing their due diligence because there are people who try to cheat the system, or that it’s something small so I shouldn’t waste time and energy being upset. That is not what I need right now. I’m sharing this because it’s something I knew nothing about before I got sick and I think people ought to understand what people like me go through to receive our disability benefits. I also am sharing it in case anyone else goes through this and wishes that she could read about someone else who just wants to set fire to all the forms and paperwork that insurance companies generate.

Finances

I don’t normally talk a lot about finances. It’s just something I’ve always been somewhat private about even since before I got sick. However, having cancer for multiple years changes things. Sometimes I think about what I would be earning if I had stayed on my career path, even without any raises or promotions, and compare that to what I “earn” now. Admittedly, that can be depressing and I know that it doesn’t serve a purpose, other than to sometimes remind me that it’s not my fault that we’re on a tighter budget. I didn’t choose to have cancer. I didn’t choose to have it return and metastasize. I didn’t choose to need treatments that made it impossible for me to work. I didn’t choose for my company to decide that because I had been on long-term disability for a year they were going to send me an email from a stranger I’d never met saying I was “terminated” eight days before they sent the email. That means that even if/when I get my miracle, I don’t have a job to return to, so I can’t just decide “hey, I’m feeling good, I’ll immediately start working full time again!” It was perfectly legal for them to fire me. I think it was immoral, but it was perfectly legal and I’m sure that it made business sense to save the few dollars it cost to maintain an employee file for me.

I had been doing some freelance work for a company I loved writing stories about animals that always made me smile. Through circumstances that are nobody’s fault (seriously, no anger toward this company, I have only good feelings toward them), that work is coming to an end so for the first time since my cancer hit I don’t have actual real paid work. Given that American society is so focused on identity and self-worth coming from our work, and how often people ask “oh, on your new treatment can you work full time?” it’s a really weird place to be, even disregarding the money.

Disability “Benefits”

Speaking of money, I get Social Security Disability Income (SSDI) from the government. If you have an issue with that please do me the kindness of not saying a damn thing here. Also, please do our society the kindness of seriously thinking about why you have a problem with that and whether you can be more compassionate toward people who need SSDI. Lest you think getting SSDI is an easy process, I applied because I had to in order to continue receiving my private long-term disability insurance benefits (LTD) that I had earned at my last full-time job. The application was long, involved a lot of questions, phone calls, telling them exactly how much I earn freelancing and how many hours a month I spent freelancing, sending medical records, and even literally answering the question of what the expected end result of my diagnosis is (in case you’re wondering, I wrote “death” because I’m nothing if not honest on these forms).

I mentioned that I get LTD in addition to the SSDI. Now, to be clear, these together do not come close to equaling what I made before I got sick. I think the last time I did the math they equaled about what  I made in my first year out of college. However, they are what enable Jarrod and me to, keeping to a careful budget, pay our mortgage and student loans on time every single month while still giving a small amount to those who are more in need. We give a lot less to our church than we used to, but we still give something and we still always buy a Street Sense from the vendors because we believe strongly in helping others. Regardless of our drop in income, we know there are plenty of others in our very community who have far less than we do. I often feel guilty for not giving more. I have enjoyed so many advantages and privileges. I was supposed to be able to use those to help others much more than I currently do. Again, I know some people would think it’s irresponsible of us to give money to others at this point in our financial life. If any of you fall into that category, kindly keep your mouth shut and contemplate the meaning of compassion.

Every so often Guardian, my LTD company, sends me forms wanting me to update them on my condition. They also send forms to my doctor. I have literally had nightmares about my doctor confusing me with some other patient, saying I could work full time, and me suddenly losing my benefits. The forms are usually long and always make me feel like they’re just looking for some reason to deny me the benefits I earned. I received a new batch of forms yesterday. They’re nine pages, double-sided, and they want me to attach additional pages on top of that. I’m supposed to fill out these forms and answer all their questions by hand because, in order to receive what I earned, I need to jump through their hoops. Their hoops are bullshit, if you’ll pardon my language.

Forms Designed to Frustrate

The latest forms also came with a cover letter that explained that, as of November 2018 benefits will be changing. Previously the plan provided benefits so long as a person was unable to perform the duties of their regular occupation on a full-time basis due to sickness or injury. Now, it’s that after 24 months (which I’m far past) “you must be unable to perform the duties of any occupation for which you are suited by education, training, or experience.” There is a subtle difference there and a whole lot of wiggle room for Guardian to decide that I could perform the duties of some occupation on some basis and therefore they could cut off my benefits.

First of all, the forms are poorly designed. It’s like they showed them to a non-website user experience professional, wrote down all of her recommendations, and then did the exact opposite. So there are lots of questions that are poorly formatted so that one is frustrated even before reading the actual questions. The questions last time were annoying enough (and they require me to answer them again), but there are new, more annoying questions this time around! They would like me to, in about an inch of space each, describe my:

  • “condition after [my] impairment began,”
  • “condition before [my] impairment began,”
  • “appearance, personal hygiene and grooming,”
  • the clothes I typically wear,
  • my height
  • my current weight
  • “usual weight” (for which I’m tempted to write “after three years of cancer this phrase is meaningless and cannot be answered” because that would be the honest answer)
  • How I spend a typical day
  • My hobbies and interests and how much time I spend on them now, as well as how much time I spent on them before my impairment began
  • My relationships with others, if I have close friends, if I get along with people, “please give examples”
  • How I respond in social situations, if I go out in public, if I require someone to go with me, how I communicate with others whether via visits, telephone, or email “Please describe and give examples”
  • And more

Plus, then there’s a fun chart where I’m supposed to check which activities I do and how often, with the choices being several times a day, daily, weekly, monthly, or never – apparently they don’t expect people do things every few months or “rarely.” The chart also wants me to list my hobbies in about an inch of space broken up by tiny boxes, and my exercises “type/duration” in less than an inch of space broken into tiny boxes, and lumps “email, internet, games,” and “business” all together under “works on computer” because the amount of concentration and coherency required to browse Pinterest is totally the same amount it takes to do “business” in their minds.

To make it even more absurd, and obvious that this is simply a tactic to try to trip people up and find reasons to deny benefits, they repeat some of the questions. They also want me to fill out by hand information about my past jobs for 15 years – in addition to attaching a resume. Because I’m sure the job I held when I was 19 (I think I might have tutored a grade school kid in Latin that I no longer remember) is relevant today.

Powerless

The most frustrating part of these forms is how powerless they make me feel. I’m pretty sure that my height and femme humanoid appearance has no bearing on whether or not I can work full time as a content analyst or writer/editor. However, if I want to keep receiving the benefits that I earned, I have to provide my height and describe my appearance.

I’m not entirely sure what they mean by my “condition” but I guess an honest answer about my “condition” before I was diagnosed would be “Happily confident in my career path and trajectory, certain that I would continue to achieve success both in terms of meaningful and decent-paying work as I lived a long, and happy life where I could soon afford to easily travel and support the arts while volunteering regularly at my county animal shelter and donating to those in need,” and “struggling with anxiety, trying to find meaning and purpose in my most-likely shortened life, hoping for a miracle, and grateful for my community, pain meds, and kind medical personnel” for my current condition. Somehow I feel like, though those answers are honest, they might not be what whoever wrote these ridiculous forms intended to receive as answers.

In the Meantime

I’ll answer the questions as accurately and honestly as I can because I have to. I may have earned this benefit, but I have no power to argue about changes to the program or why they need me to describe my appearance (Is there some Disability Beauty Pageant they want to force people into?). My only power is to hope that the people in power at Guardian start to have more compassionate hearts and decide that making people describe their appearance and list how often they “shower/bathe” isn’t something they should do. In the meantime, I’ll answer the questions, send back the forms, and hope that they don’t decide that because somewhere in the world a job might exist that they think I could do, but that doesn’t actually exist near me and want to hire me, that I don’t get benfits. Hopefully they don’t decide that they dislike one of my answers and therefore cancel my benefits.

I fucking hate being powerless.

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.

Sometimes It’s Not the Cancer

~ Bethany ~ 2 Comments

This past Sunday Jarrod and I decided to go for a hike after church. On the retreat we had heard about forest bathing and been encouraged to spend time in nature, as well as to stay active. We figured this hit both pool balls with one stroke.

woods with a dirt path

It was a delightful, if exhausting, hike. We only walked 3.5 miles but there were dips and hills and by the time we returned to our car we had completely consumed our entire paw print water pouch. However, also by that time, my chest felt tight and I couldn’t get a full breath out. I made sure to shower when we got home and used some Vicks before bed. I don’t like to use to my asthma inhaler in the evenings because it’s a stimulant and I rather enjoy sleeping. Because of that, I hoped the removal of the pollen and the Vicks would be enough.

It wasn’t. I spent Monday convincing myself not to freak out because I could not get a deep breath and my lungs hurt. Intellectually I knew it was likely just my asthma reacting to the activity in the woods, but my imagination kept insisting that my tumors had somehow ballooned up overnight and were keeping my lungs from pulling in enough air. My imagination is not always logical.

Tuesday I was still feeling like my lungs were in a vise, so I made an appointment with my primary care doctor for that afternoon. See, pre-cancer, this sort of thing would happen and I would wait at least a week, if not several weeks, before going into the doctor’s office. At that point, he would express shock that I had been functioning with so little airflow and beg me to come in earlier next time I found myself needing my inhaler so often and feeling so poorly.

Sure enough, after listening to my lungs my doctor said it was definitely my asthma and asked if I felt up to using a nebulizer at the office. I don’t have one at home because it leaves me feeling jittery, twitchy, and full of eeps — while also wanting to DO ALL THE THINGS!!!! However, as I told my doc, I was more than willing to put up with some extra twitching and shaking if it meant that I could breathe.

Using the machine was boring and caused some coughing, which is normal based on what I’ve been told and the few times I’ve used it before. However, even with feeling light headed and shaky from it, my lungs felt so much better. If you’ve ever had a super tightly-tied bodice on and it’s suddenly released, that was kind of how my lungs felt afterward.

I have an additional prescription that I’m to use for the next two weeks until ragweed season passes by. My lungs still got a bit tight when I walked 1/3 of a mile outside today so hiking is on hold for a few weeks. However, there was something reassuring about it just being asthma. It’s so easy to blame everything bad about my body on cancer. It was rather nice having this just be something normal and relatively easy to fix. I don’t get a lot of that these days.

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.

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.

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.

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

Alive

~ Bethany ~ 6 Comments

Every muscle in my body is sore. My ankles and knees feel weak. I literally fell on those knees while walking last night because my legs simply decided they were done working. Don’t worry, it was super soft dirt so there wasn’t any pain! Jarrod had to help me up and hold my arm so I didn’t fall again. I even took the stairs to our room at the Lord Nelson like a small child, shuffling both feet to each step and nearly draping myself across the railing as I went.

I cannot remember feeling more alive and full of joy.

Bethany and Jarrod on horses in the Blue Mountains

 

We rode for three hours over open wild fields, across dry creek beds, and under an  open sky. Towering sandstone cliffs surrounded us, testament to the power and glory of nature. We saw Aussie birds, semi-feral horses, and mobs of kangaroos. We walked and trotted and my much-poisoned body remembered how to rise with the rhythm of my horse’s hooves, lean on rises and dips, sit deep, shift my balance and contract muscles to communicate.

I was highly imperfect, but I cannot remember feeling so right and alive. When the guide, who is also a teacher, complimented my handling of Tubby (my horse), I’m pretty sure I glowed brighter than the setting sun.

Setting sun in the Blue Mountains

So far, this honeymoon has been an incredible return to being a couple in love, rather than a cancer patient and her caretaker. Maybe I take the occasional breather on walks, move a little slower, and napped yesterday after breakfast. But those things haven’t kept me from eating on the harbor patio of the Sydney Opera House, exploring a museum about the history of The Rocks , or visiting the Royal Botanic Gardens.

Bethany gazing up at Jarrod

Last night I felt alive. I not only didn’t feel like a patient, I didn’t feel like I was someone constantly feeling the hovering presence of death. I was living, not dying, and I felt joy flowing through my veins and tired muscles. I could not, and still cannot, stop smiling.

I am so grateful there is something I can do that fills me with joy and life. I will never forget riding in the Blue Mountains by kangaroos and Aussie birds with my husband. So many people made that gift possible. Thank you for making me laugh and bubble over with pure happiness and vitality. I am alive and I am amazed and I am grateful.

And now I’m going to sit on a beach and soak in the ocean to soothe those aching muscles. Resting is also a part of being alive.

 

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.

Death and Taxes

~ Bethany ~ 2 Comments

For anyone who believes the Senate and House bills that have passed and are headed for reconciliation are “merely” tax bills, and who think we pay too many taxes so you don’t want this stopped, I urge you to read about the many groups of people who will be harmed.

For starters, please read below about one group of people this so-called reform will directly and irrevocably harm, likely even kill. I’ve pulled the most pertinent paragraphs to make it as clear as possible, but included a link below so you can read the piece in its entirety.

“The Senate tax bill is expected to trigger a $25 billion annual cut to Medicare, the CBO estimated earlier this month.

The Medicare cuts aren’t part of the tax bill itself. Instead, they are mandatory spending cuts that would occur because of the tax bill’s $1.5 trillion increase to the deficit. These spending cuts are known as a sequester — and we know what happens to Medicare in a sequester, because it happened just a few years ago.”
…
“The last sequester in 2013 unexpectedly caused cancer clinics to turn away thousands of Medicare patients.”
…
“In that particular case, Congress had actually tried to shield Medicare from some of the deepest cuts. But because of some quirks in how Medicare pays for cancer drugs, it didn’t work — and clinics were left with incredibly difficult choices.”
…
“The Senate could pass separate legislation to skirt these rules that would require the automatic budget cuts — but as my colleague Tara Golshan notes, the politics of Republicans voting to undermine a deficit-management law won’t be easy.”
Source: Vox

I am lucky that I am not reliant on Medicare. When I was diagnosed I was employed by a large company with a strong insurance plan and, although I am far past the point where my job is protected, they have so far not fired me. However, if that were to change, because stage 4 terminal cancer is considered a disability, I would likely be eligible for, and need, Medicare.

This isn’t about me though. This is about the other patients who struggle and suffer through harsher treatments, only wanting to find a measure of wellness, who rely on Medicare.

Please explain to me why they should suffer so a tiny portion of Americans, most of whom are already wealthy and freeloading off the average American, can pay less in taxes. Please explain to me why, in a nation where Christians get riled up over people saying “Happy Holidays” instead of “Merry Christmas” this is considered acceptable?

This blood will not wash off the hands of Misters McConnell, Ryan, and those they claim to lead. Please don’t let it stain your hands through complacency. Please contact your representatives and senators to demand this be stopped. To make it easy, I’ve even included links to the contact search pages. If you hate talking on the phone, try ResistBot. If you need a script, 5calls.org has one. If you’ve already called, call again. If you’re not yet convinced why you should call, please let me know what might convince you.

cash
© 2007 Shawn Carpenter, Flickr | CC-BY-SA | via Wylio

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.