Little Things Help

A short story about how little things help.

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

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

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

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

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

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

We bought the Groupon.

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

Unlikely, But Possible

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.

Last Week’s Results — In GIFs!

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.

 

Almost Two Years

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

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

My dad

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

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

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

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

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

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

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

The Worst Superpower Ever

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

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

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

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

 

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

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

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

Estimates and Facts

(based on observations in my neighborhood)

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

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

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

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

In the Meantime

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

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

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

Some Days I Want To Imitate My Cat

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

Gray cat, curled into a ball

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

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

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

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