Hi! I'm Cadence

I was diagnosed with Chronic Myeloid Leukemia on February 12, 2018. This is my story.

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Day Zero (Transplant Day)

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Day +145

I sit down in the cheap wire chair which is about as uncomfortable as I currently feel inside. I wish I was anywhere other than here right now; that I could have just navigated all these complications on my own. I wish everything just felt easier. Most especially I wish I could have just one glass of wine. I want to be stronger; to be better. I want to simultaneously go back, and forward in time.

45 minutes, the kind older lady at the counter had told me. I’m used to waiting now. It doesn’t bother me the way it used to, the way it seems to bother everyone in a rush. I often think it’s kind of funny how I fought so hard to have more time, only to spend a large majority of it in waiting room chairs, scrolling endlessly through the news on my phone. Between clinic visits, bloodwork, central line changes, group and individual therapy, filling and managing prescriptions and of course, endless naps, it often feels like cancer is still a full time job.

I am ‘cancer free’ now of course, nearly five months after undergoing a bone-marrow transplant to save my life from leukaemia. But the truth is most days I don’t feel free from cancer at all. Rather it hangs over my head like the boogeyman in my childhood closet. Reminding me of the wounds it has left behind, filling me with guilt that I am not grateful enough it is gone; that I should be happier to simply be alive. That it can come back anytime it wants to.

I was as prepared as I could be for the physical effects of the chemotherapy. I read the pamphlets and attended the transplant class. When they told me about all the ways my body and life would change from the procedure, I nodded and signed the paperwork like I truly understood.

But I did not understand.

I was not prepared for the guilt. I was not expecting the grief.

Until I lost so many aspects of my former life, I could not have fathomed the weight of those losses and how ‘getting a second chance to live’ would in no way make those losses feel any less significant.

It’s true. I got to live. I am one of the lucky ones. Just a few short months ago that felt like completely enough- the elation and joy consumed me. Then reality slowly sank in, and I awoke with a gratitude hangover.

It’s been at least 15 minutes since I sat down. I check my watch, and cross my legs trying to gain at least some measure of comfort from the wire beneath me. I scroll through facebook and comment on people’s posts about their busy lives, in an attempt to feel like I still exist. Like I haven’t completely lost my connection to the world along with everything else that feels lost. Photos of my friend’s adorable children make me smile. I cheer on the successes of fellow artists winning awards and releasing music. I encourage my friends who are going back to school. I am genuinely happy for them all. Inside though, I am sad for myself. This sadness creates a familiar spiral of guilt and shame. Why can’t being alive just be enough?

If you’re reading this, thinking I’m a terrible person for complaining about being alive, I get it. I often feel that way about myself. How dare I survive and then complain about it? There are other people who have it worse than me. Who are not cancer free. Why can’t I just be happy with survival? I don’t expect people to necessarily understand how hard this experience is. I certainly didn’t understand how hard it would be. In fact, I think that’s one of the main issues that makes this so hard. People really can’t understand unless they’ve experienced it.

Even empathetically trying to relate is a challenge for most, because it’s hard to fathom the level of loss that a transplant or cancer leaves you with. It’s hard to comprehend why survival wouldn’t be enough to simply leave people eternally, unquestioningly happy. This results in most people saying things to me like ‘But you’re cancer free,’ or ‘But you’re alive,’ when they ask how I am doing and are surprised by my honest answer. When they have to hear the uncomfortable truth.

I am not doing well. I am struggling. That’s why I’m sitting here in this uncomfortable chair. I am grieving. I am guilty. I am lost. I am not eternally, unquestioningly happy.

It sometimes feels like I made a deal with the devil. That in order to get this second chance at life, I had to give up all the aspects of my original life that made life feel worth living. That made me feel most alive.

I am grieving the loss of both my day job, which provided me a sense of independence and financial comfort, and my music career that I tirelessly worked my entire adult life towards. Will I ever get back to music, to my band the way it was before? Maybe. By then, will we have lost valuable time? Will we have to give up on our dream of being able to find enough commercial success to live off our music? Will we have aged out of an industry that places such importance on looks and youth? Will I physically even be able to tour, to play a full length show? Will GVHD in my mouth and throat affect my voice in the long term? I am plagued by relentless questions and uncertainties about something that I love and treasure so much. I am paralyzed with the fear and guilt that my illness has potentially ended a dream not just for me, but for the other girls who I love so much; who I imagined so many more albums and adventures with.

I am grieving the loss of my fertility. Menopause is an immediate given after transplant, and although I trialed a drug I was hoping would save my fertility, it appears not to have worked. The child I had hoped to bear for my husband will likely never be. Yes; I know there are other ways to have children, but it simply does not lessen the sadness I feel about losing my ability to physically be a mother. To have that physical experience like my own mother always talked about. It makes me feel like less of a woman and less of a wife.

I am grieving the loss of my sexuality. It’s hard enough to feel attractive when you’ve lost all your hair, your face and body is bloated from the steroids, and you’ve got a Hickman line hanging out of your chest. Add a complete lack of hormones to the picture and you can fully understand that sex isn’t something I thought about often after transplant.

Yeah, I said it. Sex. If sex is something that makes you uncomfortable, then skip this paragraph. I get it. Even though we all do it, It’s a topic that is taboo; that no one wants to talk about. It’s so taboo it took me months to finally admit to anyone on my care team that something was seriously wrong ‘down there’ after my transplant. I am sadly one of the many women who was left with damage from the chemo, it’s resulting skin burns and a lack of estrogen following my transplant. Without going into detail, I will simply say that it has deeply impacted my sexuality and my sexual ability. It contributes greatly to my feelings of loss; of being less of a woman, less of a human.

My Before and After Transplant looks

I am grieving the loss of my appearance; my hair; my general sense of physical self. You’re right, my hair will grow back. The bloated chipmunk moon face will go away. The swollen feet, the ‘buffalo hump,’ the facial hair are all just temporary. But I temporarily feel the least comfortable in my own skin that I ever have. I avoid mirrors. I avoid most social situations. I can’t bear the thought of being seen like this. Yes; I know how vain that sounds. When I do finally leave the house and people say things to me like ‘You look so good,’ I almost have to stop myself from laughing out loud. In comparison to what, I often wonder. I am well aware that I do not, but I do appreciate people trying to compliment me, I understand it’s out of love. Facebook reminds me almost daily about how ‘not good’ I look. It shares memories of last year, two years ago. From vacations, festivals, photo shoots. Long hair, smiling face, care free, confident. I miss that girl and I want her back. I know she will return in time but I want time to move faster. I want hair already. I want to stop wearing wigs and ridiculous head wraps. I want my face to stop looking like a balloon. I want to look in the mirror and see someone I recognize instead of this strange body that I currently reside in. I just want to feel comfortable in my own skin again.

I am grieving the loss of many friends, people who either did not know what to say to me during this time, or who simply drifted away. Who felt I shared too much, who were uncomfortable with my honesty. I am grieving the loss of my strength and physical abilities. I am grieving the loss of a sense of security, of stability. Something I thought I would find in a transplant, in being cancer free. I thought that the end of the limbo lay just on the other side- but it didn’t. Now the limbo is what feels like an endless dance of episodes of GVHD. It is the anxiety about each clinic visit that keeps me up the night before. The worries about whether I will relapse, whether my counts will be alright, whether I will end up one of the unlucky ones one day. It is a fear and uncertainty that I can’t quite seem to put to rest. It is silly. All of this is so silly and I know it, but why can’t I stop feeling it?

This week, just when it felt like things were going well for me, My gut GVHD suddenly came back for a third time. This time it has spread to my mouth and liver. These chronic recurrences of Graft Vs Host, where my donor cells attack and destroy my own tissue and cells like a stranger aren’t just frustrating, they’re damaging. As a result, my white counts took a serious hit, and are now lower than they were when I was released from the hospital after transplant. They are so low I had to have neupogen injections to try and lift them back up so I don’t catch a serious infection. Each time The GVHD returns, I am back on high dose steroids, back at the beginning. Back to hating the ‘non-linear’ recovery process I was warned about. It feels like my body is at war with itself, while I am at war with my emotions. I don’t want to be at war. I want to find peace.

Lately it’s been hard to get out of bed. I take weeks to message people back. I feel isolated and alone, so I isolate myself even more. It’s a vicious cycle. I feel like I can’t relate to anyone anymore. I no longer feel motivation, or find joy in the things I used to. I’ve been here before in this familiar, but unwelcome place. In this darkness. This is depression. It may be temporary, situational, but it is swallowing me whole, right now in the moment.

I recognize that all of the things I’ve said are small potatoes. That I am alive and that is the greatest gift of all. I know that’s the truth. But these are all real, raw feelings. Honest fears. This is what life after cancer feels like. Being grateful to be alive doesn’t decrease my feelings of sadness for the things that I’ve lost. I don’t think it’s unfair to give myself permission to feel them sometimes. Having a transplant isn’t easy. It doesn’t just end at being cancer free. I don’t just get to go back to my old life. I have to both slowly and painfully wait for time to unfold a new life before me- and I have to create it. I have to work tirelessly every day to make it through recovery; to overcome these feelings. I have to push myself to gain back my physical strength, keep music close to my heart, to let the fear and anxiety go. I have to allow myself to grieve, but work towards moving on.

First though, I have to climb out of this darkness and accept that I couldn’t do it alone. That no one should have to. That it’s OK to ask for help. To need help. I have to let go of the guilt. I have to let go of the shame. I can do this.

When the lady finally calls my name I stand and walk to the counter, grateful to be out of the uncomfortable chair that has likely left a permanent waffle imprint on my ass. I take the white bag out to my car and open it. I stare down at the bottle of anti-depressants in my hand filled with a mix of relief and resign. Here goes nothing.

One Comment

  • Joanne Kraemer

    September 14, 2019 at 12:40 am

    I do appreciate your clear honesty and sharing. I do not know you well, only having met you at the cottage. however, I know for different reasons than yours, that the darkness can feel very hard and deep, whatever the causes. Stepping back from it a bit in my mind has taken a lifetime of practice as has being more gentle with myself. You are brave and you are more than your body and your past and present images of yourself. You are more than the darkness and guilt and loss and fear. That you do not always believe this is okay and to be expected. Somehow all the images and guilt we hold within is not true even though it feels so real. Trust only in your inner strength and courage beyond the darkness and that you are more than all of it. And do not judge so much your dark thoughts; see it as what it is without fighting it and just try to trust you are more than all of it. love Joanne

    Reply

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