Bethany Lynn Meissner of Silver Spring, loving wife, daughter, sister, aunt, animal lover and community builder, joined the saints in light October 7, 2018 after a long battle with cancer. She would have been 34.
Bethany shared ten years together with her husband, Jarrod Jabre. She was the daughter of Michael Meissner, who precedes her in death, and Kathiann Kowalski of Fairview Park, OH. She was loving sister to Laura Meissner (Abraham Denmark) of Silver Spring, and to Christopher Meissner of El Paso, TX. Her niece and nephew, Julia and Martin Denmark of Silver Spring, brought her great joy. In addition, Bethany is survived by her grandfather George Meissner; her parents-in-law; aunts, uncles, and cousins; countless friends; and her beloved cat, Toby. Bethany is also preceded in death by her grandmothers Mary Ann Meissner and Julianna Kowalski, grandfather Edward Kowalski, and cousin Maggie McKenzie.
Originally from Cleveland, Ohio, Bethany graduated from Xavier University in Cincinnati in 2007 with a bachelor’s degree in classical humanities and in Philosophy, Politics, and the Public. She moved to Silver Spring shortly after graduation and quickly became an integral part of the community. Her career and volunteer work incorporated her passions for writing, educating the public, social justice, and animal welfare, including positions at Washington Humane Society, American Institutes for Research, Petfinder, Aquilent/Booz Allen Hamilton, and the Pennyworth nonprofit thrift store. She also worked as a freelance social media consultant and writer, chronicling her life and her cancer journey here at www.bethanymeissner.com. Beth especially loved connecting people to each other and to resources they needed, and galvanizing her considerable network to help others. In 2015, Bethany was diagnosed with uterine cancer. Through three and a half years of surgeries, chemotherapy and radiation, Beth endured many setbacks but never lost her faith or her joy in life.
There will be a service of celebration of Bethany’s life on Saturday, October 20, at 3pm at Grace Episcopal Church in Silver Spring, MD. In lieu of flowers, donations may be made to Friends of Montgomery County Animals or the Johns Hopkins Kelly Gynecologic Oncology Service. Beth’s family deeply thanks everyone who has shown such love, support, and kindness over the past years.
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.
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 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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 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 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.
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.
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.
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.
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.
“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.
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.
