Mostly about my writing

Hello, friends!

I don’t have much cancer news to share. I have some neurological tests soon, and a follow-up with the neurologist next month to check for platelet-related thrombolytic events. My platelets are around 2,250,000 by my most recent CBC. I’m still kind of holding in place right now, sleeping a lot and generally wondering what’s going on inside my body. Because of the neuro stuff I have to keep a migraine diary, which is one of my least favorite health things to do. I have to keep track of a bunch of headache facts every day until my appointment. Sometimes doctors ask you to track your pain by the hour with the weather patterns, sleep schedule, and daily meals all included, but I’m not doing that this time because it’s enormously time consuming and the doctors usually glance at it and go, “Eh.” I’m just doing pain level, meds, and where the pain is, and then any extra stuff like vertigo or nausea.

But that’s basically it for health stuff right now. The big thing in my life currently is that I made my first edit of my book and now people are reading it! I was kind of terrified to let anyone read it because it has historically been hard for me to think my writing is worth reading. I get very embarrassed knowing that other people are reading things I wrote. But three friends have actually read the whole dang thing and given me feedback! And I haven’t died of shame or suspense, which was a pleasant surprise to my anxiety disorder. It’s been really good for me to have constructive criticism and to wrestle with words and sentences and paragraphs. I realized that I’ve missed writing and editing like that. Now my family and my therapist are reading it, and even while I’m fixing and reworking parts of it, I’m still proud of it.

This of course brings me to a scary place, because I wrote a book and now my therapist wants me to publish it, and my childhood self wants it to be published. My adult self even thinks that would be massively cool, but my adult self also lives in the real world and isn’t totally sure if it’s good enough to publish. A friend suggested I look into self-publishing, but that’s so much marketing and networking because you’re doing it all yourself, plus other things that don’t fall into my skill set and/or the range of activity I can actually accomplish given the state of my spoon drawer. Marketing and networking are not my strong suits in any way, and I don’t have any real social media presence, which is, as far as I can tell from preliminary research, how more traditional publishing decisions are made now.

There’s just so many questions bouncing around my head. Is it worthwhile for other people to read? Is there even an audience of people who want to read a non-fiction book about a girl they don’t know having cancer? Is there a publisher who would take my book regardless of whether or not I have a “platform” (every time a publishing article mentions platforms I immediately think of the telain in Lothlorien, but in our world platforms are way less cool)? There’s a lot of God-related stuff in my book because that’s my story, so I don’t know how a regular publisher would feel about that, but it’s also not a theology book, I don’t have any kind of relevant educational credentials, and it’s primarily about cancer and disability, so I’m not sure a Christian publisher would want it, either.

As you can probably see, I have a lot of conflicting thoughts and feelings about this whole thing. Even admitting that I want to have it published and hold a physical copy of a book I wrote in my hands feels presumptuous and kind of laughable, which I really wish it didn’t! I wish I was better at letting myself want things even if they’re unlikely. I wish my first instinct was to be kinder to myself when I’m honest about what I want. It’s really scary to admit it, though, because of course then I’m vulnerable to disappointment when it doesn’t work out.

But the main point is that I set out to write a book AND I DID. And I’m proud of it. Even if my computer (and I guess the entirety of Google?) wiped tonight and it was lost forever, I did it and I’m happy with it. That feels pretty good, I’m not going to lie. It feels like most things I’ve set out to do in my life haven’t worked out because of cancer, so I’m celebrating this one. I wish I could go back in time and tell 10 year old Kelley that we did it. Very cool.

To no one’s surprise, I’m just praying about what to do next. As with all other things in my life, I am trusting that God will give me discernment and direction if this is supposed to go anywhere. I’m kicking around some ideas about how I could reshape it into blog posts without everyone checking out from TL;DR fatigue (I don’t really want to do this for the same reason I can never cut one of my own cakes, which is that it feels like I’m chopping up my baby, but we’ll see) or finding some other way to send it out into the world like one of Charlotte’s little spider babies on a silk balloon. Maybe a fleet of paper airplanes or putting each page into a separate bottle and tossing them all into the ocean. I am open to the Lord’s leading!  

I just feel so thrilled to have this dream that I had totally given up on be fulfilled. There might be more to it, but there will never be less! Nothing will ever take away the fact that this is something I accomplished in my life. I’m giddy about it; I keep reminding myself “I wrote a book!” and it’s very exciting every time. And I am forever and always grateful for the wonderful, generous, loving people in my life who have/are wading through my typos and liberal use of footnotes. Y’all rock and I’m so blessed to be in your lives.

Anyway, that’s all the update I have! God is good, my platelets remain bad, and I continue to be surrounded by the best people ever.

Great is His faithfulness.

A bad thing and a VERY good thing

Hi friends!

I know y’all have been praying for my disability case and I want to say thank you, it means the world to me. Also, please keep praying, because the SSA contacted me on Thanksgiving Day to tell me that my appeal has been denied. I think this is my third denial, and I am not really sure where we go from here.*

You can appeal the decision twice: around 15% of people who appeal are approved on the first appeal.

If you are denied at this point you can appeal again, and your case will go to an Administrative Law Judge. The second appeal has a 51% chance of being approved.

If denied by the ALJ, you can appeal and go to an appeal council hearing, where 1% of appeals are approved.

If denied at the appeals council hearing, you can request for your case to go before a federal judge, which has another 1% chance of approval.

My issue is that I am unsure which step I am at in the process, because the SSA only provides the briefest details on their website. It literally just says, “We made a decision to deny your application on 11/23/2023.” I was told by the SSA that I needed to file an appeal when I started working with a lawyer, but on the portal it looks like they may have kept my second application open to continue from that point instead of an appeal on the application.

So I am either at the first or second appeal stage, and if you’re sick of reading about the process at this point, me, too.

It’s all just the worst. Logically and statistically I was aware of how unlikely it is that I will have a successful claim, but I did get a pretty thorough medical source statement from my doctor saying that I cannot work, and I have a lawyer so I hoped that would help.

But it didn’t, at least not yet, and it’s felt worse than I thought it would. I pretty much shut down Thursday and Friday. I slept for about 20 hours between Thursday at 11 am and Friday at 11 pm. I feel almost entirely hopeless about the whole thing and I wish the SSA had to employ people who actually know about the diseases that applicants have, because I know for a fact that the doctors who reviewed my case are not even oncologists, let alone MPN specialists, and they almost certainly never even heard of ET.

In much happier news, I did use the month of November to do a writing challenge where I wrote a 50,000 word first draft of a book in one month. It turns out that my cancer therapist was correct; the way to process the rubbish from the abusive college advisor was to basically force** myself to write until my brain could separate my writing from all the ways it was used against me. It’s devastating for my ego, because I really argued with her on it and said it was too hard, but she was totally right.

So I have a first draft of a book and I am free from my deeply ingrained terror that succeeding at anything involving the written word would reflect well on the people at my college who abused me and lied to me. I wrote a few years ago that was worried sometimes I would never get over what happened in college, and I do know healing isn’t linear and it’s never going to be like it did not happen, but YES, 2017 Kelley, you will be able to get there.

It’s not “coming to bookstores near you” or anything, but I am still really proud of it. And after a few days of mental space while I played with my nieces and nephew, I am onto the editing phase, and I’m still really proud of it. A few friends have even asked to read it, which doesn’t actually horrify me or make me want to throw up, so I’m going to call that progress and tell my therapist she was right next time I see her.

And if you’re thinking, “November isn’t over, Kelley!” you would be absolutely correct, but at the halfway point my brain suddenly decided that writing 1,667 words every day for the rest of the month was completely overwhelming and impossible and I should instead write 5,000 words every day for five days because that was “easier.” As I told a friend recently, my brain is a smoothie of nonsense.

Anyway, that’s the update. My writing is my own again (very good!), and disability was denied (bad). I am waiting to hear if my lawyer will continue with my case, but I am very tired. Part of me does wonder if there is any point in continuing to try. Please pray that I would have wisdom for making the “next step” decisions that will invariably have to be decided!

Great is His faithfulness.

*https://usafacts.org/data-projects/disability-benefit-process has a really helpful walkthrough of the process with helpful little visuals that show how many people drop out at each step.

**I bribed myself with jawbreakers during the writing process and the promised reward of getting myself an audiobook once I finished.

Triple Update

Here’s the news: between seeing my doctor and the surgeon, the swelling and pain around the mass in my arm decreased a lot. The surgeon looked at it and said he does think it’s benign. He said I could just ignore it for now and come back if it becomes swollen again. He was overall super neutral about it and disinclined to explain it to me. He kept saying “it’s just part of your body,” and I was like, “But it hasn’t been part of my body for 30 years and 6 months, so what is it, what caused it,” and he shrugged and said it just happens. I went home and researched online a bit.

Based on what I read, if the surgeon is correct that it’s benign, I should still have it out now. It’s become inflamed twice now, in increasing severity, and apparently the more that happens the worse it will get, even to the point of it rupturing. As we all know, I’m a baby about scalpels, so I don’t actually want to do it, especially since it’s NOT an in-office thing as I was told, and I’ll have to go to the hospital (it’s still outpatient with general anesthetic though, which is dumb. At least when the bone marrow biopsy switched from office to hospital they put me fully under). But then I think about waiting and potentially having it be a bigger issue where it’s infected or ruptured and THEN having to go to the hospital, and having it out now while the swelling is down feels like the best choice. I think I can manage my medical anxiety better when the scalpel is going in my arm instead of in my neck like last time.

Also if the surgeon is wrong and it is a malignant mass, sooner is better than later. And yes, that may sound paranoid, but I lived through three years of specialists telling me that it was highly unlikely I had a blood cancer only to find out that I did indeed have a blood cancer, so I’m staying paranoid until a pathologist tells me it’s benign for sure, thank you very much. I’m going in to have it actually removed in a bit over a week.

And in the meantime, I had to see a neurologist so I don’t get the dreaded “non-compliant” label on my chart, and she said that I “have to actually want” to get better, and that my expectations should be lower for preventative medication because it’s only 30% effective at best. I tried to explain to her that 30% effective would be a certifiable miracle in my opinion, and that I just don’t want to repeat the years’ long process of trying eight different preventative medications that I’ve ALREADY TRIED with a neurologist. Then she commented on my weight, told me to take less OTC pain medication, and offered me a CT venogram to make sure I don’t have cancer-related DVT that might be contributing to my migraine. She did prescribe me a preventative medication that didn’t exist when I last saw a neurologist, but my insurance has not approved it yet. I therefore have less immediate pain relief and no preventative building up in my system. Please pray my insurance will get their act together and that this medication actually works if I can get it.

The last update is that there is no update on my disability case. The SSA began reviewing my lawyer’s appeal on April 11th, and they expect it will take at least until December to review my medical case. I’m continually grateful and ashamed that my parents are supporting me, because I’d be homeless or–more likely–already dead without them. The SSA is a horrific machine (that’s a separate post) and I’m in ceaseless prayer for the thousands of disabled people whose cases are similarly stalled but who don’t have support or housing.

So that’s where I’m at, cancer and all. Still here, still sick, still praying come, Lord Jesus.

Great is His faithfulness.

TINFINITY

It’s TINFINITY

Ten years!
Two biopies!
One cancer!

In other words, today is my ten-year cancerversary! And if you’re thinking, “Wow, was that a New Girl joke? That’s like…a decade-old reference,” you would be right. I got my official cancer diagnosis a few months after Tinfinity first aired and I immediately decided that if I lived to see this day, my ten-year cancerversary would be my own personal Tinfinity (introvert style) and here we are.

And if you’ve been reading this blog for that long:

A. Thank you for your bottomless support and encouragement and high tolerance for deep dive Tolkien references. I couldn’t survive without love.

B. Yes, I still have Li’l Almond Cub! Also did you know bear clothes can go in the human clothes washer/dryer? They can.

There’s a lot of specific days in my cancer story. The first day I got sick (~3 years before I would be diagnosed), the day I finally persuaded my oncologist to just order the biopsy already, the first time the Mayo Clinic confirmed that I had cancer, the day that testing could pinpoint the genetic mutation causing my cancer, to name a few. I could probably buy myself doughnuts once a week if I celebrated them all. But June 30, 2013 was the day I sat in my oncologist’s office and he told me the bone marrow biopsy results indicated Essential Thrombocytosis. It was the day the oncologist first told me that I might be able to live a relatively normal life or I might have complications leading to myelofibrosis and death. “You’ll probably know if it’s heading for the worst in about ten years,” was his prognosis.

That was an insane thing to hear at 21. I’ve had a wide sampling of the complications you can have as a young adult ET patient. And now I’m 31, with fibrotic tissue developing in my bone marrow. It’s probably not going to be officially diagnosed as myelofibrosis, because that would require repeated biopsies to observe the progression from stage 1 scarring to stage 2 or 3.

But so here I am. Just over two years ago, multiple oncologists told me that stopping chemo would lead to my death (even though the chemo wasn’t keeping my platelet count down any longer and also may have contributed to/accelerated the development of the scar tissue). When I stopped chemo I thought I would be dead in around 9 months to a year. I thought I wouldn’t make it to Tinfinity.

And they can’t guess how long I have left. I can’t guess, either. Every time I think my body has to be past the point of functioning, I continue to live. When I was hospitalized for emergency apheresis and chemo in 2017, my oncologist told me that I had the highest platelet count she had ever seen in a living person and that she wasn’t sure how my heart was beating. At the time my platelets were around 2.5 million/microliter. For the past few months I’ve been hanging around 2 million/microliter. But there’s no telling how the count will fluctuate from month to month. I have no idea what percentage of scar tissue you can have in your bone marrow before your body stops functioning. I have no idea how much scar tissue I have in my bone marrow right now, or how fast it will progress. I’ve seen six different oncologists over the past decade+, and none of them could tell me.

But I made it to Tinfinity! Right now I typically sleep between 14-18 hours every day, with a few 2-3 hour stretches of consecutive time where I can be up and about and functioning. Some days are definitely harder than others. My pain level fluctuates from day to day, but my fatigue is consistently worsening. Even when I’m awake and I want to practice my concertina or work in my garden, I usually don’t have the energy to make that happen. It’s a huge deal for me if I can paint my nails or color my hair. A small upside is that I’ve been reading more lately, because reading requires very little physical exertion. And so if you have recommendations for good books or favorite poets, send them my way because I spend a lot of time propped up with a book these days.

I’ve also been writing more, because after 10 years of having a cancer diagnosis, I finally saw a doctor who referred me to a psychologist who specializes in therapy for cancer patients. I don’t know why I wasn’t referred to one of these specialists immediately after diagnosis, but based on everything I know about America’s healthcare system, I’m going to assume the reason was insurance-related and therefore garbage. Anyway, my cancer psychologist is amazing and it turns out that emotions I’ve felt weird and guilty about for years are normal cancer patient experiences and I am (probably) not the worst human being who has ever lived. So my cancer psychologist has been giving me little writing assignments and encouraging me to write again. Y’all, I’m writing poetry again. I’m writing and sometimes I’m even enjoying the process a bit. It’s nothing that will ever see the light of day, but it’s helping me.

I think about the person I was at 21 and the person I am now. I wish I hadn’t fought so hard to retain anything and everything that felt like “normal” life. I wish I knew what will happen next. I’d pay a lot of hypothetical money for a calendar with the important dates inked in with complete certainty: final disability decision, final conversations, worst pain day, death. I wish I knew the best choices to fill up the time in between.

But I don’t. So here I am, a decade post incurable cancer diagnosis, somehow still alive. I’m going to celebrate with dinner with my mom and watch Spirited Away. Ten cancerous years have shown me that the future can be endured, that ordinary joys and small victories can be wrested from the earth like gemstones. That the Lord loves me. That nothing can take me out of His hands.

Ten years down with the rest of my life to go, whatever that may mean.
I think I can handle it.

Great is His faithfulness.

Here’s the cancer update

Two posts in one week! Unheard of! Absurd!

This is the factual cancer update post. I still have cancer, I still feel very sick.

The good news is that I’ve had 12 cavities repaired and I am waiting on 1 crown, and then I just need two teeth pulled or possibly root-canaled (I have to see a specialist because somehow the roots of my teeth are both extra-long and weirdly crooked–one dentist referred to them as “fun house mirror roots”–which on top of everything else wrong with my body seems like…overkill). So I’m over half-way done with this installment of the ongoing dental nightmare.

Further good news: I had my 6 month appointment with my primary care doctor today and she wrote me a medical source statement for my disability application. I have found a lawyer to help me, and though the process remains depressing and stressful, it’s also really nice that this time around, when the SSA people are rude and difficult and hang up on me, there’s someone else on the call with me who can help me.

The bad news is that I am sleeping 12-16 hours a day because my fatigue is so bad and I’ve lost just over 5% of my body weight in the past six weeks, so my doctor gave me 4 different referrals that I have to follow up on in the next week (psychiatry, psychology, gastroenterology, neurology, and also a CT scan) none of which I have energy for or want to do. But do these things I shall, with the Lord’s help, because it’s all medical evidence and if Nancy Drew has taught me anything (she has, she’s taught me a lot) it’s that evidence is crucial.

Also not great is that my platelet count as of yesterday is at 1,980,000 per microliter, which my primary care doctor was quite unhappy about. It’s making my heart rate and blood pressure a bit erratic, which is in turn exacerbating the vertigo/balance/falling issues I am having. I’m still waiting to hear back from the oncologist about his take on my CBC results, as well as what he heard from Mayo.

So it’s been a mixed bag for sure. I knew applying for disability again would open a barrel of monkeys that I would then have to find homes and bananas for (AKA doing paperwork, making lots of phone calls, and meeting with more doctors who don’t know what to do with me), I just really overestimated how much energy I would have for doing that. But between at least one good doctor and a bunch of paralegals and a lawyer and my weak but stubborn self, I feel cautiously hopeful.

And that’s it for the cancer update! Thank you for reading my weird blog (today and just in general) and for your continuing love and support. Having cancer is really isolating and having “can’t do anything else for you” cancer is scary, so I really appreciate you all reading and encouraging me for almost a literal decade.

Great is His Faithfulness.

Dream Jobs

Spoiler: I don’t have a dream job anymore.

My college’s motto was literally “Dream Big!” when I started attending. My professors told us to have bigger dreams and told us over and over that we should figure out what we were passionate about and build a career around it. The idea was that God creates you to be passionate about certain things. When you figure out what those things are, then you sort out a way your passion is connected to God’s kingdom, and then obviously that’s God leading you to a career.
Now, I am in no way trying to speak for everyone in the world here, but in my experience, this works about as well as wishing on a star.

See, I’ve tried this twice. Since I was a little kid I planned on having a big family and being a stay-at-home mom. Ten years ago I thought that by 22 I would be married (another piece of nonsense they tell you a lot at a Christian college is that if you really really want to get married, God will definitely make it happen because…because He will! Don’t ask for biblical support! Just take our word for it! HE DEFINITELY WILL), pregnant with my first child, and working to adopt my second. I’ve always been passionate about adoption. My whole life I’ve wanted to raise an unfashionable number of children, most of them adopted.

And here I am: twenty-two, single, no kids. No job. Sometime in my last two years of college I realized that having kids isn’t a good idea for me. With all my health issues, any kid of mine would probably be one of history’s biggest losers in the genetic lottery. Then I got my diagnosis and found out that it can be pretty dangerous to have kids if you have ET for a number of reasons. And as I said, I am single, and the financial stability necessary for adoption looks very different for one person versus a couple.

So I figured out something else I was passionate about. I started working in catering. I loved it, and I was good at it. I was more confident catering than I was doing anything academic. It felt like God had reawakened a passion for food and serving others, and that I wasn’t going to miss out on life because I couldn’t follow my first passion. I had to deal with a lot of negativity from people informing me that I was wasting my life. Incidentally, did you know that taking a full time job catering after graduation can have negative effects on your entire future? It can. It can lead to paying off student loans, practicing good communication, and (gasp of horror!) in some drastic cases, a life of serving others. You know, like Jesus did. Heaven forbid.

I loved it. But I couldn’t handle it. Food service goes hand in hand with weird, long hours and stress. Over time, it got to the point where a good day was one where I could see out of both eyes and make it the whole day without throwing up. So I had to quit.

It’s been really hard; for me, catering/food service career was “dreaming big”. I narrowly chose to attend college over culinary school. Recently I was offered a job as a cook, and it hurt to have to turn it down. A year ago that would have been my dream job. If I didn’t have cancer it still would be.

Another thing people tell me quite often is that I’m young and I don’t know what will happen. That’s true. And it’s also kind of my point. I might never get to be a mom, no matter how passionate I am, no matter how much I dream. Or I might turn out to have a big family of my own a few years down the road. Or maybe I’ll end up doing social work and building up other families. I guess the problem that I’ve had with the “find your passion and pursue it” thing is that it puts me at the center when I have no idea what is going to happen. As Gandalf would say, “Even the very wise cannot see all ends,” and I’m not very wise at all.

In the past couple of years I’ve had to repeatedly take the things I’m passionate about, the dreams that I had for my life, and return them to the loving hands of Christ. And I’m going to be honest: a lot of the time it has seemed unfair that God would create me with all these dreams and desires and passions that seem to be entirely superfluous to whatever plan He is working out in my life.

Despite all the verbal messaging I received over the years about finding my passion and proceeding from there, I don’t really know that many people whose lives have worked out that way. In watching the lives and choices of people I respect, I see a willingness to go where the Lord leads, regardless of how passionate they feel about it or how it fits in with their dreams. Particularly I have seen my parents and other family members commit in faithfulness to something they didn’t necessarily want and wouldn’t have chosen, because they were called by the Lord. And I’ve seen God do incredible things through that faithfulness.

George MacDonald wrote that, “As I cannot do as I please, I must please as I do.” I think that’s where I’ve ended up now. I can’t do as I please. But I am growing in faith that God will guide me and make me able to do whatever He calls me to in the vast uncertainty of my future, whether it’s some new dream job or not. I hope that joy and maybe even passion will follow later, but if not, God is still good. And I believe that when I know Him fully, as I am fully known, I will understand the purposes of all the dreams and passions and gifts that God has given.