Rare Disease Day

It’s Rare Disease Day 2019, friends and readers!

The point of this blog is that I have a rare disease: Essential Thrombocythemia (or Essential Thrombocytosis), which is a Myeloproliferative Neoplasm, which is a fancy way of saying that it’s a blood cancer.

It’s treatable, which is good, but it’s incurable, which is a real bummer. And being a rare disease, it has its own special issues. Here are some of the things that you have to deal with when you have a rare disease, based entirely on my personal experience (so it’s not an exhaustive list by any means):

1. You have to do your own research. I had to learn a ton of stuff about blood and platelets that I never wanted to know, because blood is gross. This isn’t so much restricted to rare diseases. By and large it seems like doctors are either disinclined or too busy to really spend time educating their patients, because I’ve had an worrisome number of doctors say, “Just Google it when you get home,” when I’ve asked them questions.

2. You have to educate your healthcare providers. When you have a rare disease, chances are most of your doctors, apart from your specialist (if you’re lucky!) are not going to have a clue. They will stare at you blankly when you make them aware of your diagnosis. They will snort and say, “Who told you that?” And they might even leave you in your little treatment room, find a computer, and Google your rare disease to give themselves a little crash course in MPNs. All of things have happened to me at one time or another. Which leads to this one…

3. You have to stay on your toes. If you have a rare disease, doctors, dentists, nurses, etc. may not be aware that some common prescriptions are contraindicated with your condition and/or treatment. I’ve really had to get comfortable speaking up and telling my healthcare providers when they’re making recommendations that my oncologist has already dismissed.

3. It is hard to find a good specialist. I’m fortunate to live near some really great hospitals and resources, and it still took 3 years for me to get a concrete diagnosis. I was diagnosed 5.5 years ago, and only in the past year have I started working with an oncologist who is confident in her knowledge of ET and her treatment plan for me. My first oncologist was very forward regarding his belief that I was too young to have ET and his lack of experience treating someone my age and gender who had ET. Neither of these things inspired confidence or trust. My current oncologist is amazing, and I’m really grateful she was the one on call when I ended up in the emergency room with blood counts that literally could have killed me.

4. If people haven’t heard of it, they’re less likely to care. People tend to be less sympathetic or understanding if they’re unfamiliar with your diagnosis. I have a weird double threat, in that it’s a rare and invisible illness. Nobody has heard of ET, and most days I don’t look particularly sick. If they saw me in the hospital hooked up to the apheresis machine with the hanging bag full of my excess cancerous platelets, they might think, “No wonder she’s so pale all the time!” But otherwise they might just assume I’ve been living in Nan Elmoth for the past few decades. So when you have a rare disease, sometimes you have to spend your energy explaining to the people around you that you are sick and you’re not just a naturally grouchy hermit. Although I did have a professor recommend that I consider “hermit” as an occupation pre-diagnosis, so maybe it’s not just the cancer.

5. Having a rare disease changes the way you look at things. Last weekend, I tried to clean my house Marie Kondo style, and I ended up in trouble with my oncologist for throwing out all my chemo when it failed to spark joy. ba-dum tsh But honestly, it does shape the way I think, to some extent. I try to be mindful and to curb it as much as possible, but having a rare disease is isolating and sometimes surreal. It’s an extra factor that’s always looming in the back of my calculations for the future. It’s blocked a lot of paths forward and probably opened a door or two. All in all, I think it’s probably another facet of this “through a glass dimly” situation, and I’m really looking forward to the time when it doesn’t matter anymore.

Again, these are based just on my experience. I’m sure it’s different for other rare diseases. Do you know other people with rare diseases? Ask them about it! If they want to talk, listen and learn. I’m really blessed, because the people close to me have been so supportive and so willing to learn about ET. They give me the benefit of the doubt when I can’t haul my near-corpse out of bed, and they are gracious when I go on extended rants about romanticized portrayals of chronic illness in popular books and movies.

Most importantly, they remind me with love that this rare disease is yet another part of life that has to be laid down at the feet of Christ as we grow near to Him, as His Kingdom comes. I couldn’t do this rare disease life alone, and I’m blessed by the particular people God has placed near me. Yet another way He provides. Having a strong support system is really critical to living with a rare disease, and mine is the best*.

Great is His Faithfulness.

*based on no empirical research and just entirely founded on my gratitude and overwhelming love for the people who are the hands and feet of Christ to me.
Y’all are wonderful. 

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Update

Hello friends,

I wrote last fall about how my depression medication had stopped working and I was facing the process of starting a new medication. at the time I hoped it would be a matter of two or three months. And I have changed medications and I’m working with my doctor to try to get the dose correct, but I’m still in that place of intense depression. It’s probably at a similar level to what I was experiencing in college, although I’m fully cognizant of it this time. Sometimes it’s hard for me to tell if that’s better or worse. I know the awareness and honesty helps me to more actively fight against the lies that are pounding through my head, but in some ways it was easier when I was in denial about my depression.

I’m struggling with a near complete sense of hopelessness. It feels like I will continuously come up against doors that are closed to me because of my cancer, and that my circumstances will never improve beyond this daily fight for survival. I think about this poem by Emily Dickinson that I read when I was in college:

“Pain — has an Element of Blank —
It cannot recollect
When it begun — or if there were
A time when it was not —

It has no Future — but itself —
Its Infinite realms contain
Its Past — enlightened to perceive
New Periods — of Pain.”

which, big mood, Emily Dickinson.

I know that shortly after I was diagnosed with Major Depressive Disorder (a few months after my cancer diagnosis), when I had started on medication and was slowly balancing out, there was this one day that I was at my parent’s house. We had some musician friends staying with us from out of town. We had muffins for breakfast and we were sitting around the living room; they were playing music and singing, and we talked about art and faith and poetry. And out of nowhere I had this very clear thought in my head, that I was happy. That this was what happiness felt like, and I needed to remember it and hold on to it because of how often in the previous few years I hadn’t been able to remember what that felt like. Because in the ravaging isolation of depression it was all really dim. I knew that I hadn’t always been like that, but only in a very vague way.

So I started to collect those moments, to make myself very aware when they were happening and crystallize them in my mind. That way when the pain is really intense and I have that blank–that I can’t remember when I wasn’t in pain and it feels like the pain will never end–I can look at those really clear memories. I had to practice that a lot when the medication was working and I was doing well, because it’s hard to build those habits when you’re in the midst of depression, but now it’s almost automatic. And that helps to remind me that I haven’t always felt this way, and I haven’t always been this much of a burden to the people around me.

But the future is harder, in a way. I mean, long term it’s not, because I have that ultimate hope. I know that it will be better, that all these tears will be wiped from my face, that this illness in my body will be healed. I believe this broken world will be put right, and on my good days I can see the kingdom coming. And for that future, which feels so far away and too long delayed, I can trust the Lord. But for my earthly future, it honestly feels like the Lord has abandoned me. I don’t understand why He doesn’t intervene in these circumstances. It feels like I’m drowning, like waves of loss are overwhelming me and I can’t catch my breath or even see the shore anymore. It feels like He’s left me.

And again, I know that isn’t true. I know that He is sustaining me. I know that His Spirit is with me, even if the day to day circumstances of my life are unchanging and bleak. And I also know that He didn’t promise us so many of the things we expect. He doesn’t promise us a fulfilling vocation or a spouse or a home on earth or even health. I remember hearing the story of Job and my third grade teacher telling us that our faith in God would not insulate us from the effects of sin in this world, and I grasped what she was saying even though I didn’t understand at the time. I know that even if the blows continue to fall harder and faster it won’t change the truth of the redemption God is working in the world and in my heart. But now we see in a mirror darkly, and with depression it feels like I can’t even see that much. It seems like this grief and loneliness and loss is too much to bear.

I may have written about this before, but one of the things that really helped me during my depression in college was “A Ring of Endless Light” by Madeleine L’Engle. Vicky Austin, one of L’Engle’s recurring characters, experiences such a flood of death and traumatic loss throughout the book that she is almost catatonic near the end. She’s sitting with her dying grandfather, and he tells her that he knows she has made a commitment to her faith, but that she has been submerged in death and darkness and needs to reaffirm her choice of the light. I needed to read that in college, and I need it now, too.

I’m in this season of pain, and I don’t know if it will end or if anything will change. And I don’t feel hopeful. I feel angry and frustrated and alone. But I know what is true.

God is good. His mercies are new every morning, and His kingdom is coming. Even if I don’t feel it right now and even if I don’t understand.

 

Great is His faithfulness.

Cancer girl + dog

Belated announcement of a big life development:

I got a puppy in June! He’s pretty terrific and I’m very grateful to whichever of my doctors it was who said, “Do you like dogs? You should get a dog,” when giving me cancer coping suggestions.
His name is Wooster (or also Bertram Wilberforce Wooster, B. W. Wooster, Wooster Booster, Woost, Woosty, Woo-dog, and Woodles) and he has his own version of the “Sister, Sister” song from White Christmas:

“Wooster, Wooster,
There was never such devoted Wooster,
Always has to have a chaperone, yes sir,
He chews on all the furniture.”

Wooster is a Soft Coated Wheaten Terrier, which is a hypoallergenic breed (family dog allergies), and he’s 9.5 months old. I met another Wheatie puppy but she wasn’t the right fit, which maybe sounds like some made up nonsense but it’s not. Then I contacted a bunch of breeders and I only heard back from one who didn’t have a million-year waiting list for a show-quality puppy (Wooster has a small patch of darker fur on his back, instead of a completely even wheaten coat, so he can’t be a show dog. I tell him it’s his lucky spot and that he dodged a bullet). The minute Wooster ran up to me I knew he was the right dog, which sounds like more made up nonsense, but I’ve decided to dive right in and be one of those unashamed pet people who makes their dog a Christmas stocking.

IMG_20181205_210625_041

Like I said, he’s a terrific dog and I love him to distraction. Also, I’ve spoken to him very seriously about my expectation that he will find me my one true love just like Pongo in 101 Dalmations. Like Roger, my ideal man is tall, funny, and totally on board for adopting 101 older children otherwise likely to age out of foster care. Also he has to be cool with the whole cancer thing which, you can imagine, is not terribly common. But Wooster is a smart dog and I trust him to pick out the right guy.

I think it’s kind of interesting that the doctor recommended I get a dog because part of this whole cancer thing is that it now takes a ton more work to take care of myself, so to cope with that I’ve taken on a completely dependent li’l puppy who is another ton of work to care for on top of managing the cancer thing. Wooster has a lot of energy and can wear me out. But he’s also cuddly and funny and he’s very extroverted which means that I’ve had to meet a bunch of new friends and talk to strangers on walks and sometimes even in the drive-thru. My family loves him, too, and they’re super supportive and helpful when I’m too sick to walk him.

Like a lot of good things in life, I think if I had known how hard it would be I would have been too scared to drive into the depths of Indiana to pick him up. So it’s a good thing I didn’t know. He’s a lot of work but he’s also generous with his love and he makes me exercise. Plus it’s a little bit nice to be able to take care of someone else for a change. I have so little to offer and I usually need so much help from the people around me that I feel really useless a lot of the time. But I can fill a dog bowl with the best of them, and I can brush out tangles and administer heartworm chews and teach a dog to shake. He makes me less self- focused. Wooster helps keep a little part of my heart open that could easily be shut off because of this stupid cancer and stupider depression.

Wooster is truly a superlative dog, and the answer to a prayer I’ve been praying since I was a small child. After 26 years of having no dogs at all, I have been blessed beyond measure in the dog department. I’ve lost a lot of things because of the cancer. It’s nice to have such a tangible, energetic reminder that I’ve gained things, too. Even in little things, the Lord is at work.

Great is His faithfulness.

MPN Awareness Day

It’s MPN Awareness Day!

The myeloproliferative neoplasms are blood cancers: polycythemia vera (PV), myelofibrosis (MF), and essential thrombocytosis (ET). You all know I’m ET Girl, but in honor of the day I’m going to do a broad “be aware!” post.

The MPNs are rare and kind of unknown, even for doctors. I’ve definitely had experiences where I’m trying to educate healthcare providers about my condition in order to get the care I need. There have been pretty incredible scientific advances regarding MPNs even just since I was diagnosed, which is cool. When I was first diagnosed they couldn’t determine the mutation that caused my cancer, and about two years ago they successfully tested for and identified it.

Nerdy DNA facts aside, ET and the other MPNs are incurable. It’s likely that I’ll have cancer for the rest of my life, which means I’ll be on chemo the rest of my life. It’s a chronic and invisible illness, and I definitely haven’t made a secret of the fact that I don’t love having it.

Chronic illnesses are lonely beasts. They can separate you from even the people who love you the most. They’re intense, and invisible illnesses in particular demand a huge amount of trust from people on the outside.

If they passed me on the street on a good day, a stranger probably couldn’t tell I have cancer. For now it’s all internal. Migraines, auras, bone pain, insomnia, depression, nausea, vertigo, syncope…there aren’t many visual aids for those symptoms.

whatsherface

I feel like What’s-Her-Face from Teen Girl Squad most days. Possum included.

When I was being diagnosed, I was hoping for a treatable disease I could overcome and move on from, something people could rally around for a brief time and help me defeat. And that’s not what ET is. ET is long and slow and subtle. It’s exhausting to never recover; I imagine it’s exhausting to read about someone never recovering. Thanks for reading and know that I appreciate your continued support and prayers.

The more people know about ET and the other MPNs, the less alone I (and other MPN patients) feel. And I can’t really express how much that means to me.

So thanks for all you do to keep me in community, and thank you for being aware of one more hard thing, even if it doesn’t directly impact you.

And, as always, great is His faithfulness. So far beyond anything I could ask or imagine.

Happy MPN Awareness!

A blog post

These are difficult days.

I feel weak and empty and exhausted.

My niece asked me recently if I was ever going to have children of my own. I explained that I can’t, that the medicine I take to keep me from being sick would be very bad for babies, and that I have to take it for the rest of my life. This is what they told me since I was diagnosed: if you want to have biological children, you need to do it before you start chemo.

This cancer is a long walk of ongoing loss. There was a moment when I looked at the paperwork from the hospital and realized that the pills I started three days earlier meant I would never be a biological mother–

I am overwhelmed by this grief.

And I’m still trying to figure out how to move on. How to live in hope. I want to get over it and stop playing it over in my head: maybe if I had made different choices I could have gotten married and had a child before this happened, maybe if I had given up meat sooner I could have bought myself a few more chemo-free years. Futile and empty and impossible to know.

I think that one of the worst parts of this grief may be how useless it makes me. It takes so much effort to exist day to day right now that I have nothing left to offer anyone else. And I hate that. That feels like failure on top of loss.

I want to be a person who can step in and serve, be the hands of Christ to other people instead of being a burden. And right now that seems impossible for me, with this stupid cancer and stupid depression. I know that’s a lie. I know that God is not limited by my weakness. Right now it’s hard for me to imagine anything for myself except more loss and more loneliness. But the Holy Spirit is stronger than what I feel. And what I know to be true is stronger than what I feel.

If my niece asks me again about my childlessness, I can remind her that God has promised children to the barren women. That Jesus promised those who mourn will be comforted. That the night will end, once and for all. I have to remind myself of these things–the night seems very long. But I know it will be worth it, this very grief overwhelmed by the glory of the Lord.

Who is like the Lord our God?

Praise the Lord!
Praise, O servants of the Lord,
    praise the name of the Lord!

Blessed be the name of the Lord
    from this time forth and forevermore!
From the rising of the sun to its setting,
    the name of the Lord is to be praised!

The Lord is high above all nations,
    and his glory above the heavens!
Who is like the Lord our God,
    who is seated on high,
who looks far down
    on the heavens and the earth?
He raises the poor from the dust
    and lifts the needy from the ash heap,
to make them sit with princes,
    with the princes of his people.
He gives the barren woman a home,
    making her the joyous mother of children.
Praise the Lord!
Psalm 113 ESV

Chemo Update

Here is what has happened cancer-wise since my hospitalization:

So I was taking two doses of chemo every day. I felt really sick and lost some weight because the only thing I could eat before 3 pm was oatmeal. After several weeks it became apparent that the dosage was not working, as my platelet count had doubled up again. The oncologist bumped me up to chemo three times a day. I felt even worse. I had nosebleeds every day and my mouth would bleed profusely every time I brushed my teeth. I developed petechiae all over my legs, which are these little red specks under your skin where your capillaries have broken.

I went in for labs and it turns out that the chemo worked too well, because my white and red blood cell counts, as well as my platelet count, were all well below the number a person should have. The chemo targets blood cells, and it’s very imprecise about which type of blood cell it destroys.

So I was on hold with the chemo for about a month while my counts recovered. The oncologist recently started me back up at only 2 doses per day, since my white and red cell counts had just barely returned to the bottom of the normal range and my platelets were back to double the amount a normal person should have.

I have labs scheduled at the end of March to see how my blood is doing. I’ve been throwing up a lot and I had a little nosebleed on Friday, but I’m trying not to freak out prematurely. I’m taking 2,000 mg of chemo every day so there are bound to be some side effects.

I’m having a really difficult time. I keep trying to write about it but I still don’t really know how to communicate the emotional and spiritual aspects of this whole cancer thing, especially since my hospitalization. All I can say is that God is faithful even when I am not, and that He has richly blessed me with my family and my friends, who endlessly put up with me and care for me and pray for me. Some of them even make me amazing original ET art.

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The best custom cancer card in the history of art. Obviously.

Thank you for your continued prayers and encouragement!

 

Quick update

Hi friends! I’ll be writing in more detail when I’m reunited with my computer, but I’m forever grateful for prayers, so here goes.

On Tuesday I went to the ER with some chest pain and shortness of breath, combined with a brutal migraine. I was admitted to the hospital because my platelet count is back up over 2 million.

I’ve started chemo and I also had my first round of platelet apheresis, which is were they run all your blood through a machine that splits off the extra platelets into an IV bag. It takes about 3 hours, and I’ve had a temporary catheter placed in my neck. Currently the plan is for me to do apheresis again on Thursday and Friday, then be discharged.

 

Hopefully that continues to be the plan, because I’m already tired of being in the hospital and the catheter is very uncomfortable.

I’m anxious about stuff at work and I just don’t know what is going to happen for me chemo-wise, but my friends and family are as always the best. Visiting, praying, bringing me a squishmallow owl, and taking care of my birds while I’m hospitalized.

The squishiest owl that has ever existed.

If you are willing, please pray that the doctors will actually let me go on Friday, because I really don’t want to be here for Christmas. And please pray that I will respond well to the medication.

Have a merry Christmas and thanks for your prayers!