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)

 

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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.

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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!

Managing post-diagnosis grief

Since 2012, my health has been in a downward spiral. And really, if I start at the absolute beginning, it was in 2009, when I had mono. When I talk to my medical team, I always refer to this as the beginning, because I haven’t felt 100% since then.

One November night in 2012, in my first apartment after college graduation, I woke up with horrible pain and pressure in my abdomen. I was shaking – or shivering – and I spent the night on the bathroom floor next to the baseboard heater trying to keep warm and wishing I could throw up and feel better. My job at the time was pretty unforgiving with only a few sick days for the year and no one to fill in for me if I was absent. I went to work and suffered through the next couple of days until the weekend.

I slept all the time, which I attributed to a busy and stressful job. I thought if I exercised more, I’d have more energy. That’s what they say, right? I started and finished the P90X program but developed a hernia in the process, and it still didn’t solve my fatigue problem. Lunch breaks were designated for naps in my car in the parking lot. My fairly active routine deteriorated into survival mode.

And then there was anxiety. Lots of it, building up and piling on until I had moments when leaving the house for anything but work could send me into tears. I hated eating out – I still kind of do – because I never know when my stomach pain and digestive issues will appear in a fury. I didn’t want to fly with my husband, a pilot, because I knew I’d be trapped in an airborne tin can and it would be many minutes before I could get relief if I needed it. I still feel that way. I am convinced anxiety is the one of the toughest enemies.

I saw my nurse practitioner shortly after we got married because I thought I was depressed. I told her about my sleeping, my apathy, my inability to feel anything except irritation and anxiety. She asked if it was interfering with my ability to function normally. In that moment, I dismissed it all, because I was still going to work, still eating, still sleeping. I wasn’t sick. I had months where I felt better than others, so it had to be my fault when I felt sicker. And she didn’t know how to help me. She ordered a blood draw that day, but they lost either my blood or my results, and no one ever admitted to me that they needed to test again. I may have had an ITP diagnosis in 2013. I could have been in treatment that much sooner.

Last year, when finally I was diagnosed, I felt so much relief. Fear, yes, but more relief. Because I didn’t have to pretend I was feeling okay anymore. I didn’t have to listen to people dismiss my symptoms. It wasn’t all made up in my head. I didn’t have to “just suck it up and deal with it.”

Often the initial reaction [to a diagnosis] is one of relief; you may feel grateful to know the cause of previously unexplained symptoms. This is especially true with an autoimmune diagnosis, since the disease may have been progressing for years with confusing periods of illness and remission that are often dismissed by family, friends, and even physicians. A diagnosis can offer you much-needed validation. It is not uncommon for your relief to quickly fade, though…

From The Autoimmune Wellness Handbook by Mickey Trescott, NTP and Angie Alt, NTC, CHC

Relief lasted a long time – four or five months, maybe. But then there was grief. In the past year I’ve been in all five stages of it, not necessarily in linear order.

I have felt guilty for grieving after my diagnosis. I mean, I was grieving, in some form, a loss of my own life. This is not to discount other forms of grief and loss. It’s just to acknowledge what a diagnosis can do to a person. Deconstruction starts. You realize you can no longer live life the same way again. Priorities change. Life seems a little shorter, more urgent, more uncertain. When everyone else has a myriad of choices, you may only have a few. The current takes you where it’s going, and you grieve over loss of choice, loss of relationships, loss of a time when health didn’t dictate your days.

Grief isn’t like a round of antibiotics. You don’t cycle through it once and problem solved. Grief is like an autoimmune disease. Good days come unexpectedly. You enjoy them and try not to focus on the loss. Bad days immobilize. No one knows a cure. Remission. Relapse. Remission. Relapse. Your body doesn’t care when – whether it’s Christmas or you’re on vacation or you have an important meeting.

I have no control. No medicine to make it better. I just let the current take me, live with purpose, and wait for a better day.

And I want to note – no one knows if there is a connection between anxiety and digestive symptoms and my one autoimmune diagnosis. From my research, it looks like many autoimmune patients eventually receive diagnoses of multiple autoimmune diseases. Maybe we’re headed in that direction. I’m not sure. The trouble is our healthcare system isn’t really that great at tackling autoimmune disease and chronic illness. It likes the patients it can treat and kick out. But I’ll talk about that in a future post.

It’s hard to be a childless Christian

I know, I know. I hear you already. It’s hard to be childless no matter who you are. It’s hard to be a Christian. It’s hard to want things your peers don’t want. It’s hard to be single, to be married, to be different. Life is hard, period.

Our four year wedding anniversary is coming up, and we’ve been reflecting on how our relationship has changed in the six years we’ve known each other. Our decision not to have children – yep, we decided that before my diagnosis, and it was a good thing we did – has been questioned, praised, shamed. We knew it was the right thing for us to do. We didn’t know why, but some circumstances have led us to follow instincts the Holy Spirit has anchored in our hearts even though we can’t clearly see why.

Fear of disappointment
As a kid, I was driven to excel by the desire to avoid disappointment, and to fulfill the expectations of my peers and family. I enjoyed school and most of the tasks to which I set my mind. But disappointment chased me down, and being the one left behind – that was my deepest fear.

So here, at 28, finally embedded in both a career and church I love, I can safely name everyone’s primary expectation for me. According to the way of all things, I have checked off all the other things I should do first, and now, pushing 30, we should probably hurry up and have some kids.

I feel a little bit naked writing this, letting all these strangers into our lives and our marriage. Please share a little grace with me as you read the rest.

Fighting the narrative
At first, I felt angry. The Christian narrative about being “fruitful” made me feel sinful and selfish, and more than anything, I didn’t want to disappoint people. The conflicting forces resulted in someone who felt really quite hostile about the topic. (If you were the recipient of this hostility, I apologize. I wish I understood then what I do now.) I felt helpless to fight back when people were quoting a “commandment” to “be fruitful” from Genesis. I didn’t have a Bible verse. I just had an instinct, a feeling.

Then I remembered a time when some “wiser” person quoted scripture to prove me wrong. As a teenager, I gave all the money I raised to another kid in youth group who couldn’t afford to go to camp, and I stayed home. The youth pastor asked me why God would lead me to stay home from such a wonderful experience, and I told him I felt this was the Holy Spirit’s direction. He interrogated me, as if I’d have some irrefutable scripture to quote, but I had nothing. All I knew was someone needed money, and I had it, so I gave it away. I acted on nothing but an urging from the Spirit.

The “ah-ha” moment
When I was diagnosed with ITP (chronically low platelets), we had this ah-ha moment when everything made sense. Our desire to wait for children, or maybe never have children, possibly saved my life. (In case you were wondering, low platelet counts are pretty dangerous for pregnant women. You can read more about my ITP story here.) The diagnosis, as scary as it is, brought me relief I can’t explain. It freed me from these scripture-mongers trying to run my life with their literal interpretations. And it freed me to start fighting against the narrative that childless Christians by choice are sinful and selfish.

I read this terrific article by Raymond Van Leeuwen in Christianity Today, written from the perspective of a parent with adult children, who explains this “be fruitful” phrase is not a commandment but a blessing. Children are a gift from God, and choosing not to have children can also be a blessing. God does not call us all to the same end.

Different, but okay
Here’s the gist of our experience: we feel our decision not to have children has been God-ordained, but we also understand that with this blessing comes other work God has asked us to do. This blessing has allowed us the privilege to follow God’s call to places and commitments that would be difficult with children.

None of this is to discount the blessing and extraordinary call to parenthood. I admire my peers who parent so gracefully, who have such lovely children. At times, I feel left behind when I look at them and realize how different our lives would look had we chosen that route. Either way, God would have seen us through. We just look different from most of our peers, and that’s okay.

A conversation about my health

I knew we needed to discuss the 2017 plan for my health again after some disheartening lab results. But I was really dreading it. Why? Because treatment is expensive, and it could undermine our financial plans for this year.

I’ve noticed some unrest on social media about pending healthcare changes in the U.S. I want to say only this: the conversation changes when you are diagnosed with a chronic illness. Not just the political conversation but family conversation. Money conversation. Employment conversation.

When you’re sick, you live in a world where hardly anyone understands you and your condition, not everyone wants to hire you, and no one wants to insure you. So when you’re an atypical patient like me, it makes the conversation even more difficult. My condition isn’t emergent, so we find ourselves asking, where are the boundaries of treatment? What do I really need? What can we afford to do? And how often?

When your healthcare isn’t superb – mine is probably mediocre at best – you stop talking about getting better and start talking about what’s absolutely necessary. I can’t imagine not having a job with decent benefits. My husband and I are probably two of the hardest people to insure: a pilot and someone with a dangerous blood disorder.

I have become numb to the healthcare conversation, but it used to feel emotionally charged. Sometimes I can muster up energy for it, but truth be told, I need that energy for my health, for conversations with my medical team, for conversations about paying our bills. That’s why we need people on the other side of the fence – people who are well and who care about us – to stand up for us. We’re already fighting a fight, some of us for our lives. Among all of the other things you care about fervently, please consider us, too. When you make decisions about our politicians, when you help choose a healthcare plan for your company, when you join the healthcare conversation, think of us.

We had the conversation, although reluctantly. To be perfectly and painfully honest, my health is already altering our lives without considering how expensive it is. I don’t want to be afraid to talk about treatment options because of their cost. Bills shouldn’t be scarier than treatments.

And listen – before you tell me about all the “helpful” options out there – I know about payment plans and support groups and double checking hospital bills. But none of that alone will change the conversation. We have to change the healthcare conversation about chronic illness. We have to advocate.

“Words kill, words give life;
they’re either poison or fruit—you choose.” Proverbs 18:21 (MSG)