Six months after chemo: failure, change and gratitude

Sorry for my unannounced hiatus. I took some time away from technology for Lent, which didn’t go at all the way I hoped. I had to reevaluate what I’m doing here on the blog and decide whether or not to continue. I decided to proceed with caution, because I know the things I say here really hit home in a difficult way for some of my readers.

It’s been six months since the last round of chemo–not something I want to celebrate, but I’ll leave a stone there to remember it. My body is not the same, which comes with moments of gratitude and unrelenting frustration. For many weeks I couldn’t climb a flight of stairs without my heart racing, and thereafter relegated myself to the couch for months to crochet rather than exercise.

But with each round of labs, we started noticing some predictability in my platelet counts, which meant the chemo was starting to do its job. I’m out of the official wait-and-see period now, and my doctor is pleased with the results even though they aren’t technically “normal.” Sometimes stability is more desirable than remission. Stability is predictability, and predictability means freedom. Even so, I believe by this time next year, my doctor may be calling this remission.

My brain fog still comes and goes but seems to have passed overall. I’m probably most grateful for that right now, because it’s not easy to be a professional writer and constantly feel like I’ve had one too many sips of liquid Benadryl.

The theme of the last six months has been change, which has been accompanied by its friend, failure. Change and failure have clouded my mind with doubt about my skills, my ability, my “calling,” so to speak. I have so many unfinished projects, and I can’t blame fatigue for all of my failure to finish. What would happen if I just finished one thing? Am I willing to make even more changes to ensure I can finish what I started? Will God show up? Because this is impossible without some divine intervention and inspiration.

I’m pedaling uphill trying to gain a little momentum and break away from life post-chemo. I know I’ll fall into unhealthy habits if I don’t give my heart a little push, literally and figuratively.

A few weeks ago, a sentence appeared in my mind out of nowhere, so I wrote it down on a trusty sticky note and stuck it to my bathroom mirror.

God is interested in your failure because he is interested in your future.

It feels a little clunky to me right now, so I’m hesitant to share it. I think it’s part of a huge calling to embrace failure and take it with grace because it’s the only way forward. What does it mean to you? How has your perspective on failure affected your daily life?

I am grateful for your prayers, words of encouragement, curious inquiries, and for loving us through this. We cannot ever feel alone when are loved by the Church like this. Thank you, thank you, thank you.

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An unusual gift

Someone asked me today if I have the gift of discernment. For a moment, I just sat there trying to figure out how I should answer that question.

I mean, it’s a resounding yes. But there’s a backstory to that answer.

Ten years ago, it would have been a resounding no, absolutely not. I’m good with empathy and the interpretation of texts and encouragement. Those are my “spiritual gifts.” I would’ve fought you if you had said I was gifted with discernment.

All of that is because someone once looked me in the eyes and said, “You clearly do not have the gift of discernment.” What they meant to say was, “I think you have been making bad decisions.”

Side note: you can still make poor choices even though you have the gift of what my friend and I like to call “the Christian voodoo,” AKA discernment.

The Christian voodoo doesn’t “work” in all scenarios. I’m not an empath from Star Trek who can sense other people’s vibes. I can’t call upon the gift to give guidance on demand like a magic 8 ball. I don’t see the future (most of the time), nor do I know the right course of action at all of life’s intersections.

Discernment is hard to describe, probably because I have never known life without it. Only in the last few years have I been able to understand discernment and use it constructively. I still know very little, but it’s probably a lot like this:

A gift for seeing things that can’t be seen.

Hearing the unspoken.

Being tuned in to context clues.

A sixth sense for the intangible.

In Star Trek: Discovery (bear with me, I’m a Trekkie), one of my favorite characters is Saru, a Kelpien, whose species can sense the coming of death. In Star Trek: The Next Saru, a KelpienGeneration, I love Counselor Troi, who is an empath (like a semi-telepath). In Voyager, I suspect Chakotay has the gift of discernment as well. I love these characters because they’re on the same frequency as others. They aren’t just concerned–they can actually see glimpses of other people exactly as they are. They are deliberate, yet emotional, beings. They know people, but they also make mistakes.

I’ve spent over a decade of my life trying to convince myself that this gift is not real, and if I had the gift, I’d be a better human being. I’d know the answers. I’d know what to do. I could help people.

I’m the first to admit that I spend entirely too much time listening to other people. At 29, I’m still trying to visualize that boundary of, “OK, you can’t and/or don’t know this about me.” When it comes to others gifted with discernment, it’s sometimes confusing to hear them speak truths about me when it’s muffled by a lot of other “truth.”

What I’ve realized is the real truth comes not from people insisting upon their version of the story, but from people who see an opportunity to open the blinds for you, so you can see what’s already there. They are the people who are willing to wade through all of the lies to help you find yourself.

This post isn’t really about the gift of discernment, because if I really talked about that, everyone would think it was hogwash. I’m not here to stir up people over something as inconsequential as my spiritual gifts. I suppose I’m writing because someone once told me I wasn’t something, that I couldn’t do something, that I was wrong about myself. Those words never left me.

Don’t stop listening to people just because they say destructive, hurtful things. Instead, set up your BS filter so you can flag that sewage before it starts polluting your drinking water.

And keep this in mind: you never know when something as small as a question can silence a decade’s worth of doubts.

Getting chemo when you don’t have cancer (two months post-treatment update)

I find it hard to believe that two months have passed since my last chemo infusion. I only had a week to prepare before my first infusion happened in October, and I spent the entire week furiously cleaning our house, grocery shopping, digging out all of my hand sanitizer and trying to find things to do for the six-hour infusion. I looked like a mom before the blizzard hits.

I’d spent the last year resisting the idea of a chemo treatment and telling everyone that I didn’t want to try that hard for remission. But then another year of relentless fatigue and weekly labs and monthly examinations wears on you.

Nine years ago, before I had ITP, I didn’t plan my day around crushing fatigue. It’s hard to remember what it felt like. The day I rode 13 miles on my bike and only came home with wobbly legs and a sore rear. The days I used to spend hours out on the lake. Helping my dad with mulching around the house. I don’t really know what 28 feels like to everyone else, because I feel probably 20 years older than I am.

Chemo is hard on your body, even the mild stuff. I had a different kind of chemo fromIMG_20171005_155125113 what most people imagine – a B-cell depletion therapy. I didn’t lose my hair or have a lot of nausea. But I still feel very tired, like sometimes I feel like I can’t lift my head off of the pillow. Mesh that with my old friend, seasonal depression, and the fatigue is paralyzing.

Tomorrow is my birthday. I get poked again, more labs. So far the results haven’t been very promising – the same roller coaster all ITP patients experience. High numbers one week, low the next. One good thing – I haven’t seen a bruise in a few weeks. That’s always promising. I bruised so much for so long that eventually I stopped noticing.

Normal would be nice, I guess. I don’t hang my hope in the numbers because I live in a dysfunctional, unreliable body. But it would be nice to get some good results on my birthday tomorrow.

A final stab at remission

You’d think sitting in a semicircle next to half a dozen cancer patients with a needle taped in your arm during a conversation with your doctor would be a really vulnerable, uncomfortable experience. Instead it’s a little bit like support group.

The gist of the conversation? This isn’t working.

Head in hands, I listened. The doctor was using his bad news face. I’ve seen it used on other people but never on me.

When the nurse pulled my IV out for the last time, she threw everything away and stopped. She looked at me for a moment. Not pity, just observing.

“So you probably don’t have any questions.”

“No, I’ve heard it all before. There are only so many options,” I said.

“We’ll get you through it.”

I smiled and started packing my bag. Earlier that day I passed a visitor with my IV pole in tow, an older woman. I don’t know who she was there to visit. She had her purse and a cup of coffee, and she looked at me a little sheepishly. Then she offered a half smile, like, I’m so sorry. I wanted to say, “It’s not what it looks like!” But maybe it was. Maybe it is.

Stuffing my blanket back into a bag, I looked back up at my nurse, shrugging. “This is my life now.”

22770870_10156013425688689_1382147882863061152_oShe has been attentive to me, even when she wasn’t my nurse, careful to understand everything I’m feeling. My emotional well being has always been a part of what’s considered “vitals.”

I’d spent the last four hours looking at that needle, knowing we were concluding my fourth week of chemo. And it isn’t working. The chemo – the more aggressive approach – isn’t working. And the new plan is maintenance. I’m a patient on call. Whatever my body decides to do, I follow. I can’t book a flight or plan a vacation or schedule dinner with a friend without a refund plan or an exit clause.

I’m refractory to all of the treatments we’ve tried. Now we take it literally one week at a time. Cautious waiting, careful watching. The new treatment plan.

This is my life now.

My nurse seemed to accept that answer. I think she wanted me to say what patients are supposed to say, to be vulnerable. I’m not okay. I want my life back, my old life. I don’t want to see another needle. Instead, I end up saying things that comfort and reassure other people. Those nurses especially. They see a lot of final chapters in people’s lives. But I don’t want her to feel sorry on my behalf.

It’s going to be okay. My God will meet all my needs. He’s given me so much strength. His promises mean we have nothing to fear.

I keep saying all the things I say to myself every day.

This is my life now.

“He is before all things, and in him all things hold together.” Colossians 1:17 (NIV)

 

The most important thing I have to say

Mowing is my thinking zone. My husband always marvels at my love of mowing grass. I like that it’s easy and mindless. I like that I can see progress wherever I’ve been. I can block out the entire world while I’m there (and have a valid excuse for not answering my phone). It’s where I think clearly, because despite all the noise, it’s quiet in my mind.

I am running low on words. I have been repeating the answer to, “How are you?” – the patient’s hardest question to answer – over and over again since I started chemotherapy treatments two weeks ago. I don’t know what to say anymore. Do they want to know the whole story? Do I even have the energy to tell that story? Probably not. While I was mowing, I kept returning to this question: what is the most important thing I have to say? About my health? About suffering? About work? About change? About me? About God?

Stopping there, I realized the question does not call for separation of any of these things. Life cannot be compartmentalized. Life needs to have space for suffering alongside and inside work and God and change. We need to make space to express and experience hurt where we don’t normally allow it.

So what is the most important thing I have to say right now? How am I?

I am hopeful. And hope is not exclusive. It isn’t handed out to the people who can pay for security with new homes or good health insurance. Hope isn’t disingenuous. You can’t smile your way to it. There’s no therapy or treatment regimen that will give you genuine hope.

Hope has made my life livable, even enjoyable, when most things are unpleasant. I live in a posture of hope. It means I acknowledge both my circumstances and suffering as well as a God who has been gracious and compassionate (Psalm 145:8), who has promised to meet all of my needs (Romans 4:20-25), who knows my suffering but has promised his mercies (Lamentations 3). Hope gives me strength to wait for God to fulfill his promises, just as he always does.

If you ask me how I am, I may tell you everything, but more likely, I will probably say I am filled with hope. I may share Colossians 1:16-17, which has carried me through all kinds of suffering and waiting and anxiety: “For in him all things were created: things in heaven and on earth, visible and invisible, whether thrones or powers or rulers or authorities; all things have been created through him and for him. He is before all things, and in him all things hold together” (NIV).

chemo day 1

I will tell it to you in my own words. God created me and gave me purpose, which has given me hope. God and chemo and suffering and hurt are all in my story. He was there before this illness, and he will orchestrate the end of this story, whatever that happens to be. He is holding me together, my health, my family, my job, my mind. I will wait for him, because he has not abandoned me. I trust him. I trust that whatever happens, it will be good, because he will be glorified through it.

Jesus loves us immensely, and he is pleading for us. Our suffering cannot separate us from him. In his love, there is victory. Romans 8:34-37 (my paraphrase)

Marriage lessons from a chronic illness diagnosis

My husband does all of the cooking, because he loves it so much more than me. And he feeds the cat, because the cat is his. Everything else in our life is a joint effort, which started because he used to be a corporate pilot. Sometimes he’d be called away with only hours notice and could be gone for several days at a time. Our zoo of a home – dogs, fish, a cat – couldn’t come to a screeching halt every time it was left in my care.

Even though being a corporate pilot is no longer his full-time job, our sharing of duties hasn’t changed. We’ve only been married for four years, but we’ve gotten used to sharing everything. So when I was diagnosed with ITP, things got a little weird.

You can’t share a diagnosis. As much as he’d probably like to share the physical burden, that’s all on me, too. What I feel about it is definitely not what he feels. So we’ve been talking about how we’ve learned to be partners to fight for healing when it feels like the fight is singularly mine.

You’re allowed to have differing opinions. This is perhaps the most important lesson we’ve learned in the 18 months since my diagnosis. I don’t mean you can differ in opinion from your care team – although that is also possible and totally acceptable. I’m saying you don’t have put on the front that you’re telepathic, answer every question exactly the same, and have a near identical vision for the future. Just yesterday someone asked what we want, and we both answered completely differently. Marriage didn’t and won’t make us the same person. But it did help us acknowledge and make space for the other person’s needs and wants. If he wants to go fishing and I’m not feeling super great, sometimes I pack up and go anyway. If I need an evening on the couch with a movie, he makes space in the schedule for me to get some rest. We don’t even have the same exact opinion on how to proceed with my treatment, but that’s okay. A difference of opinion isn’t going to change the amount of support in our relationship.

SIDE NOTE – Some people would instead call part of this lesson “making sacrifices,” which I completely detest. It implies that there is a winning and losing side, and a sacrifice may help you win or gain an advantage. As a patient, it’s really difficult to look at my health or my marriage as a win/lose situation. I’d be setting myself up for a huge disappointment to think of the outcome as strictly win or lose. It is what it is. There is nothing inherently good or evil about my illness. And his decision to set aside his schedule to care for me doesn’t mean he has lost.

It’s important to set aside plenty of “space.” This goes back to the spoon theory and making sure you and your spouse have enough time to recharge and recuperate. Caregivers need rest, too. While I’ve noticed that physical space dedicated to rest is really helpful, we’ve both recognized how valuable it is to have free weeknights. It gives us the flexibility to take care of things as we are able without feeling pressured by outside commitments. Home is a sacred space for us, and we are cautious about opening our doors and our time to others out of respect to each other and the rest we need.

Planning for the worst-case scenario eliminates worst-case scenarios. Someone actually said to me, “Oh, honey, you can’t think like that. You have to be positive!” Maybe she was some kind of yogi and believed positive thoughts have magical healing powers. We aren’t encouraging anyone to be pessimistic about chronic illness outcomes, just to be clear. As an example, last year, I had multiple infusions that each cost thousands of dollars. Once we realized just how strenuous this could be on our finances, possibly for the rest of my life, we immediately took measures to ensure we were prepared to handle the worst case financial and health-related situation. Chronic illness is hard enough. Planning ahead eases some of the stress should things take a turn for the worse.

Talk about it all, not for the purpose of dumping on your spouse but for the purpose of complete care. This goes both ways. We talk about my health, his health, what we’re feeling, what we’re learning, what we desire, what we know. We commit to helping the other be the best person in the middle of all this hard stuff. We hold each other accountable to shine the light of Jesus even when we feel like crap and would rather not deal with people. We help each other fulfill the commitments and promises we make to the other people who need us. We try to live as openly as possible to each other, which I’ll readily admit I’m always needing to improve.

Finally, sometimes we just have really bad days. I cry. We argue. I feel the full range of emotions: fear, loneliness, anger, self-pity, sadness, frustration. We talk it out, and sometimes we don’t. Sometimes we just move on. When I asked him if he worries about what’s coming next, he said, “I can’t, because I just look at each day as it comes. I can’t control any of that, so I don’t worry about it.”

Rachel_Jordan063Photo credit: Miranda Fuchs Photography

Making space for the unexpected

For the first time in days, I’ve had time (or made time) to sit down and write. Somehow I’ve become preoccupied with things that can’t be saved for later. Finishing grad school one year ago should have lifted that burden of busyness for me, but I just exchanged one kind of busy for another.

One evening before the rain last week, I took a walk through our garden, the same garden that seems to fail year after year. We have too many trees. The shade is cool and pleasant, and the plants grow green and blossom. But they never get enough direct light to bear any fruit. That’s where I live, and, ironically, that’s also my life. There’s not enough light, and all the things I want to grow and bear fruit – all the things I’m passionate about – it all looks great, but when harvest comes each year, all I’ve got is tiny green tomatoes.

20729035_10155758254838689_8252325486591419800_o

A few weeks ago, I stopped my current treatment. After 15 months of steroid treatment and no lasting positive results, I decided enough was enough. With my doctor’s blessing, I stopped. And I am paying for it. My body is trying to figure out how to be “normal” again. The unrelenting fatigue has returned, and I haven’t had a pain-free day for four weeks. I’m preparing to start an elimination diet in hopes it will relieve some of my symptoms, but I’m simply empty. I barely have enough go to clean my bathroom. And now I have to food prep so I don’t stray from the list of foods I temporarily can’t eat?

That same evening last week when I walked through the garden, I found one oversized melon with perfect striping all around hidden in the watermelon vines. It probably weighed seven or eight pounds already. Somehow it was thriving, even in the shade, even though we’ve never grown watermelon before, even though it’s been a cool summer.

I realized that you have to make space in your life for things to grow, even if you don’t expect them to, even if all the good things seem held back. The truth is this: unexpected things happen all the time. But if you act upon your doubt and till the garden under early, you can prevent the miracle.

It’s hard to imagine what things might look like if the unexpected happened, but I’m certainly going to try to make room and hold a space for it, you know, just in case it appears.

 

P.S. Happy ITP awareness month!