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Staying Afloat

'Dark Sea', Winterton-On-Sea, Norfolk
Photo credit: Pete Bridgwood

This is not going to be a fun post to read. It was not a fun post to write.

I had another scan this week. If you’re wondering what the results were, I’m going to politely ask you to read this entire post. There’s a reason, I promise.

Monday: Insurance

My scan was on Tuesday, and Monday was an in-service day at work, which meant no students or classes to teach. “Scanxiety” had long ago set in and I was looking forward to a bit of distraction. I walked out of a meeting at 9:45 to find a voicemail from the radiology department of UPenn. The speaker informed me that my insurance company had denied my request for my MRI, which was scheduled for 9:00 the next morning. Furthermore, if I couldn’t get it straightened away by 2 PM, I would lose my appointment slot. I was floored: why was this an issue now and not when I made the appointment back in August? The shock quickly changed to panic. If I couldn’t make my MRI, my oncology appointment the next day would be pointless, and it would take me potentially weeks to get in again.

As I tried to reach the Nurse Practitioner with the Sarcoma Program at Penn, our HR person at work helped me reach my insurance company, since my case manager was not able to be reached. This insurance company put me in touch with a third party that does insurance authorizations and was apparently responsible for the refusal. The third party informed me that I already had an MRI on file and could not have repeat imaging done without winning an appeal of the decision. I finally reached someone at the Sarcoma Program on the fifth try an hour later, and the nurse assured me they’d work as fast as possible. It was 11 AM by now, and we were racing against the clock to get this so I could keep my appointment. As I bounced from phone call to phone call, 2 PM passed. Fortunately, my new best friend in the Radiology Department told me the Director of Radiology would extend the deadline, as the office was actively working to straighten things out.

Does it sound chaotic and stressful? Let me assure you, it was.

At 5:15, I got a call from the Nurse Practitioner that my scan for the next day was on. She shared in my frustration, as she had to reorganize her whole day as well, and apologized that I had to go through it. Then she shared the hold-up: the third party thought I was not currently in treatment.

Tuesday: Scan

I arrived early for my MRI. When I give my name at check-in, the receptionist sighed, “oh, I’m so glad your authorization went through!” (I guess my issue was quite well known at that point amongst the staff at the office.)

I went back to prepare for my scan get the IV for contrast put in. The tech remembered me from the last visit when it took four attempts to get a vein. I was embarrassed – was that my reputation there now?  They got it on the first attempt this time, though they went through a vein in my wrist, which hurt whenever I moved in the slightest. I listened to Queen inside the machine, since I listened to Michael Jackson the first two scans, and I was looking to break my streak of bad luck.

I was ready for good news.

Wednesday: Appointment

I stayed up as late as I could on Tuesday night and tried to sleep in late on Wednesday. My appointment was at 2:15, and I could feel my heart beating through my chest beginning around 9 AM. I did everything I could to keep myself calm and distracted: read, watch Netflix, even practicing hand lettering, which was widely unsuccessful with my shaking hands.

By the time I was ready to go over the bridge, I felt like I was going to get sick or burst out into laughter. At the start of my appointment, the nurse took my blood pressure, which was through the roof. I told her I anticipated as much and described how anxious I was about the appointment. With a wide grin, she said that I sounded like I was on speed.

A few minutes later, my oncologist walked in. He said my tumor was “the same.” Specifically and scientifically, it was the same in two directions, grew two millimeters in the third. I had prepared myself for two results: growth or shrinkage. I knew that if this thing grew, we’d opt for aggressive treatment. If it shrank, we’d stay the course. I hadn’t really thought through what it would mean if I basically got news.

My oncologist suggested another oral chemotherapy. I couldn’t help it: the tears started flowing. I’m sure it was confusing to my doctor; it was confusing to me.

Here’s the best I’m able to explain it: I had worked so hard to get myself comfortable with the idea of more aggressive treatment. I was ready to take time to focus solely on battling this disease and shrinking this thing that’s been only growing since I started treatment in March. (And yes, just a few millimeters still counts to me as growth.) To try a new oral chemo felt like starting back at square one. I was trading fatigue and nausea on one drug for fatigue and edema on a new one. He also shared that it would take six months to chart any change or progress.

I expressed my frustration: I was ready to shrink this thing, and I was discouraged and tired from 9 months of failed treatment. (Hearing that I was tired, my doctor offered that since Desmoids are so unpredictable, I could do nothing and see if it stayed the same on its own. That scared me even more.) It’s not that I wanted more aggressive treatment and the slew of side effects that go with it: I wanted change. And if it meant aggressive treatment to get to a place where I’d have some tumor-free years, sure, bring it. I was less afraid of change than I was of the status quo, of mediocrity, of more of the same. I understand and agree with his call, but it doesn’t hurt less.

The rest of the meeting was talking and listening and to be honest, I don’t remember most of it. What I do remember are the words that have been ringing in my ears ever since: “This could just be something you live with your whole life.”

It was terrifying to hear, but not because it’s the first time I’ve heard it. I’ve just never heard anyone other than the voice in my head say it.

In the Water

The reason I asked you to read this whole entry is that it’s long and frustrating and boring. It’s a glimpse into what my day-to-day life is like living with an incurable form of rare cancer. Despite my best efforts, no one wants to read about battling with an insurance company. It’s just not an exciting narrative.

Being on chemo is like treading water. You’re tired, it’s incredibly overwhelming, and at all times you’re aware there’s a chance you might drown. You see other people swimming perfectly and you’re unable to get into a rhythm. Sometimes you feel like you’ve gotten the swing of it, and others you’re gasping for air desperately trying to afloat. You’re aware that the sun is sometimes shining or the water is comfortable, but it’s not always a thought you can register. You ache for the ability to become buoyant and swim. Imagine then, treading water, while others swim by and tell you that you’re lucky that you haven’t drowned.

I’ve struggled with sharing these scan results and appointment outcomes. When sharing my scan results, I’ve frequently had people suggest other perspectives. I have heard things like “at least it didn’t grow,” or “well, you’re not heading into surgery.” These are both accurate and completely valid points, but it does not change how I feel, especially when sharing the news so soon after my appointment. I’m disappointed and frustrated, and I think I have every right to be. I hope to live well into my eighties and to think that I could be fighting this thing for over 50 years is devastating. I want to get to that place of optimism and determination, and I do think I will. But now, in all honesty, I’m just not. People often comment on my strength, and truthfully, don’t feel stronger than the next person. It’s simply not realistic to act strong all the time, either.

Right now, I’m not feeling strong, I’m feeling tired. I’m feeling frustrated. I’m feeling disappointed. I need some time to regroup and figure out steps I can take in the next few months to feel fulfilled and happy, chemo and all. I think I’ll get there. First, I need to figure out what that means to me.

Thanks, as always, for following along with my triumphs and challenges – and for your willingness to listen.

PS: For a helpful perspective on empathy from someone who studies it for a living, check out this short animation with words from Brene Brown. She’s got some great advice on what’s helpful and what to avoid when speaking with someone who’s facing a challenge.

9 thoughts on “Staying Afloat”

  1. Hi Christina

    Just want to say I love this post. I don’t love your results and I’m sorry they weren’t what you hoped and prayed for but I love how you perfectly capture every detail of what it’s really like. Your swimming analogy describes this process and life so crystal clear. I’m so sorry you have to deal with this and all of the ups and downs that come with it. You sound like such a strong and amazing person.

    (I don’t have the same cancer but can relate to your daily life journey and admire your ability to share it all).

    Stay strong and light.

    XO

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    1. Alena, I’m so glad this post resonated with you. I wish neither of us had to fight this battle – but I hope you know you’ve got my love and support every step of the way. (I always say this is the worst club with the best members.) I’m cheering you on and sending love xo

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  2. Christina I truly do not know what to say other than you are touching lives with your journey and I remember thinking back inthe day… everything is temporary. Its a mind set. I could not open the animation you recommended to view so I apologize if my comment is simple or discouraging but I know your mom and God have a direct open communication.

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    1. Thank you, Mrs. Ciocca. It’s not simple or discouraging at all – especially since you’ve been through something similar. Thank you for all your love and support. Please give Mr. Ciocca and the boys a hug for me xo

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  3. Christina,
    I am sorry, sorry you are going through this tiring daily battle. I wish we could transport back to our time on the Camino when Hannah and I met your smiling face. I have been following you from the beginning and have appreciated your honestly, humor, and grit. I have laughed and cried. We are praying for you, for healing, for peace, for sanity living through all this, for lower blood pressure( ha) and for the doctors that care for you.
    All my love,
    Grace (Chmura)

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  4. Hi my sweet,

    I know I have been absent from your blog for a while but I have been thinking of you and praying for you every single day ❤

    I am not sure if this is the animation you shared, but I just watched an animation video about empathy about two weeks ago. The thing that really hit me in the video I saw is that we tend to offer comfort with the words "at least". I know people intend to be helpful but it is not, we cannot downplay a problem. We have to acknowledge that problems are well…problems for the people dealing with them. It's not the way to make people feel better. I am sorry your scan results were not as you hoped and I know you don't feel like a powerful queen right now but you are winning this race/fight/whatever just by allowing yourself to feel. You are being so real and by doing that you are inspiring everyone else. I can't put into words how much your blog gives me, because unlike you I cannot use words to truly express what I am feeling or to make an insurance story interesting (you see what I did there? Sneaky, sly me 😀 ).

    Also, you are still being incredibly productive! Believe me, most people not fighting an illness are not as productive as you are so when it is too hard rest. That is the most productive thing you can do, because it makes your body stronger.

    Sorry if I am preachy here, but one of the things I am trying to work on is being only in the present. I can't go make to the past, and I don't know what is in my future. I only really know where I am right now.

    I don't mean go out and act like a buffoon, I have never been into that carpe diem because you are not promised tomorrow crap. I am a big believer in thinking about how the future is going to look like based on what we are doing now. Good news for you, you are already doing that! You are living your life in the now and taking action for your future! You don't need to think about how this might be with you for life because you can't control it. It might be with you forever, or it might not. You have a lot of people praying for the latter, and I think that really counts for something.

    I might live to be a hundred, I might get hit by a bus tomorrow. I'll look both ways before I cross, but that's really all I can do.

    I am so sorry that your body is going through unwanted physical changes, I know how much that takes a toll on the spirit. You are being amazing about it though 🙂 and from the marathon pictures, you are still pretty as ever.

    Hugging you from over here,

    Mari

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  5. Christina, As inconceivable as it is to go through life in the manner that life has handed you, I am blown away by your honesty and descriptive skills. I am appreciative that you allow all of us to try to enter into a snapishot of your reality. As a RN I’m extremely sensitive to all my clients needs and concerns but as you say and the video says, I don’t really know what it is like on a daily basis. The treading water analogy was a good one. Thank you for sharing! I have always been blown away by your acting and singing skills. I know this is one stage you never imagined yourself to be on. Please enjoy the holidays with family and Friends.

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