Oh, is my hair loss from chemotherapy inconveniencing you?

For those of us who take forms of chemotherapy for our disease, it’s a pretty big deal.

It’s bad enough that we get flak from the cancer community for using the term “chemotherapy” when explaining our biologics, when that’s what it actually is! I get that some of us aren’t on the high doses that cancer patients are on, BUT IT IS STILL CHEMO AND IT STILL HITS US HARD. It’s not a competition to see who’s on the worst drug or dosage.

I’ve been on biologic infusions for a couple years now. That means that I willingly consent to toxic chemicals being pumped into my body in the hopes that it makes me well. Sometimes, they do. I have unfortunately been on the other end of that a few times. The last time my body didn’t like chemo, the backlash consisted of multiple heart attacks and an eight day stint in the ICU.

It’s not a competition, so don’t tell me the chemo I take doesn’t have a toll. I get nauseated and vomit for hours. My body turns to lead and I have to sleep like the dead for up to 20 hours sometimes, just to recoup. AND my hair falls out.

Its gotten better over the years. The first time I went on chemo it came out in large clumps, to the point where I had to cut my hair short to hide the gaps. These days it doesn’t fall out en masse. But it does fall out! I have strands all over my floor, all over my pillows, and all over my bed and sheets. It sticks to my clothes, and it stands out cause I’m a redhead these days. You really can’t miss it.

It makes me very self conscious. You don’t need to tell me my hair is everywhere, I KNOW. No one knows better than me!

Most people are pretty cool about it. Sometimes they pick it off me discreetly, or mention I have a chunk sitting on my shoulder. I blush, take care of it, and we act like it didn’t happen.

You know what’s not ok?? Acting like you’re put out because my hair is in your vicinity. I’d love to not have my hair fall out, but I didn’t choose to be chronically ill, and I certainly don’t love being on chemotherapy. Have some fucking sympathy or compassion. But saying “Ew your hair is everywhere” or refusing to touch things in MY room because the hair “grosses” you out… Like are you serious?

How entitled do you have to be that you shame me for something I can’t control and hate about myself?!?! That shit is not ok. And while in my naivety I may have put up with it in the past, I will not longer.

No one in any circumstance is allowed to make you feel bad about yourself or your circumstance. EVER. That shows their insecurities, not yours.

So that will no longer fly with me. Nor should it for anyone else.

What my disease really took

I’m going to be 34 this year, in just a few short months.

Life right now is different than how I imagined it ten years ago.

Life is different than how I ever imagined it.

I don’t think anyone sits and wonders what their life would really be like if they were ever diagnosed with a debilitating disease. Sure, we make idle remarks about how hard it would be, but no one ever truly believes that it would happen to them, or a loved one.

But then it does and the world turns upside down and everything you knew or wanted fades away to a memory. It sits in a dusty picture frame on a forgotten shelf in the back of your mind along with all the other things you’ll never accomplish.

I used to entertain a lovely dream about meeting someone. Or maybe I already knew them. But in this dream time had stopped and we had realised our perfectness together, and so that all was right in the world. They thought I was the most beautiful creature, just as I thought they were as well. We would sit together in silence, holding hands, and smiling in the knowledge of how lucky we were that we had found the meaning of life.

Then when I got sick my dream started to change. Now it was that this person didn’t care that I was ill, and just loved me all the same. When they looked at me all the pain and suffering would melt away, and I would no longer be a girl who was sick. I would just be a girl. A girl who a boy fell in love with.

I don’t let myself think about that dream anymore, not even the newer one. I look in the mirror and see the face that everyone else sees, the face that he wouldn’t want to see. 45 pounds of steroid weight around my belly, legs, bottom, and face. A pain that never goes away, even when treated with a smile. An air of sadness that I can’t hide no matter how optimistic I act. Tight and shiny purple knuckles, legs covered in black and purple varicose veins, a body that rebels against itself at every turn. It’s not what anyone looks for in a mate, I know. I don’t let myself entertain the dream anymore.

Instead I keep my days full. I keep a tidy house, I cook and bake for friends who want it, I play with my cats and feel comforted by their never waning love and devotion. I feel happy for my friends who have found the life I yearn for but can’t have. I congratulate the news of new life, of new families, of love that was meant to last for someone else.

But I don’t let myself think about what I’ve lost. The part of my disease that no one realises is the worst. The loss that is never talked about because it hurts to wonder about something I can’t have.  The someone I will never have. What my disease really took. The one hope I’m not allowed to dream about. The life I lost when I got sick.

If you would like to help me stay on my feet and live happily and not homeless, please visit my campaign and make a donation to my fund. Thank you.

Christine Lilley’s Life Fund

I hope no one knows what this feels like

Burden.

I don’t like that word. In fact, when I read it or hear it, I involuntarily cringe. It’s one of those words that has a lot of different meanings, or rather different interpretations depending on the way it’s used. Whichever way, though,  it’s really not a happy word.

Recently, to my dismay, I have been feeling like that’s exactly what I’ve become. A burden. When I started to get sicker, and remission felt further and further away, it never occurred to me that my predicament may turn out like this. Sure, I was very ill, but I always thought I’d be ok in the long run. ‘That’s what family is for’ was the line that played like a loop in my mind. We grow up listening to our parents or families drill into our brains that family is important, and that no matter what, they are always there for us.

‘You never turn your back on your family’

‘Your family will be there when everyone else is gone’

or my favorite gem of all:

‘If you’re ever in trouble, you can rely on your family to see you through’.

My parents divorced when I was quite young, and I was the only child from that union. My mom never remarried, though she’s had a few long-term partners over the years, including the decade long one she is in now. My father remarried before I was ten, had another child, and became a step-parent as well. So, growing up I had two families, which means two sets of everything. Two sets of values, two sets of morals, two sets of family friends and calabash aunties/uncles, and on the entertaining side (especially when I was a kid), two sets of holiday/birthday presents.

My two families could not be more different. I grew up with my mom in a house filled with fun, games, laughter, and happiness. Though we never had a lot of money, I don’t ever remember feeling poor or wanting more. She raised me to realise I didn’t need money to be happy, and that as long as I had family and friends, I was rich in my own way.

I grew up in two countries. I was born with dual citizenship for USA and New Zealand, a perk that ended in 1982, much to the dismay of one of my best friends in NZ with an American father. When I was ten my mom moved us to New Zealand to be closer to her family, which made me very happy. I was able to grow close to my grandparents, and see one of the three uncles on my mom’s side more often. Family was very important in New Zealand, and I loved that we were able to see ours so often while we were there. My grandparents helped my mom a lot when she needed it, we stayed with them when between homes, my grandma would look after me if I was sick, and we would in turn help them when Grandpa’s health started to fade. Family, to us, was a strong word, not to be taken lightly.

When I was 14, mom moved us back to the U.S. for job opportunities, and we settled back into life in Hawaii. Then I had the opportunity to get to know my other half of the family better. My dad was living with my step-mom and half sister, who was only four or five at the time. The difference between my life with mom and my life with dad is that I never lived with him,  only visiting on weekends and school holidays. And to be honest, that worked perfectly for me since I’d always clashed with my dad, and on most occasions avoided him when possible. We never quite figured out how to have a healthy father-daughter relationship, as I felt most of his “bonding time” with me was filled with what he viewed as ‘constructive criticism’ on every aspect of my body and life.

My dad’s side of the family seemed so large when I was young. There were my dad’s four brothers and sister, all whom I loved and adored growing up, and then my step mom’s side of the family which seemed extensive and never ending. I never knew whom was a blood relative or just a ‘calabash’ family friend because everyone was always introduced to me as “Auntie” or “Uncle”. My step mom used to throw these great big parties and potlucks with what seemed like a hundred people wandering about, kids running through the throngs and jumping into the pool. Or instead, there would be great Italian sit down dinners with 15+ guests, and at least 6 courses of food. A lot of my memories of those meals however were my job at them, clearing all the dishes and plates and then the hours of washing up to follow. Back then, in my young mind, I felt very Cinderella-esque, and when confronting my dad on these feelings I tended to only make the scenario worse.

Not until I was older, out of my teens and into my early twenties, did I feel like I had a real connection to that side of my family. My dad and I finally started to bond in our own way, taking small boating trips together in the afternoon after I got off work, or checking out matinees at the local movie theatre. As long as we were doing activities and not actually talking, we did quite well together. Plus once my half sister hit her late teens we started to have things to talk about and bond over as well, and that’s when she and I started to become close.

So while I had a different kind of life growing up, and two sets of families to go along with it, I’ve always known the importance of “family”. Families stick together is what I always heard on both sides. Easy enough to remember. How could anyone forget?

As my disease has progressed and my options become more and more limited I can’t help but wonder about these family values that were instilled into my brain. No matter how hard it gets, or how down and out I may feel, or how helpless and homeless seem to have become the same word… I always figured I’d be ok, because I have so much family!

Or do I?

I have mom who fights for me as much as she can, but she mostly does it alone. Rides to the doctors, sitting with me during every single treatment and procedure, holding my hand every week as they poke and prod me with needles, helping my to sit and stand when my body fails to help itself.  Her partner never quite understanding of what’s happening to me and my body. Wanting her to spend less time with me, and more with him. Wondering why I need so much help, why I can’t take care of myself. I see myself through his eyes, I am a burden.

I asked my dad and step mom for help and they decided it wasn’t in their best interests. Or rather, I hadn’t “earned” their help, or trust, or love. Their words not mine. I guess family is only there to the end with strings attached. I shouldn’t have to feel like I’m a burden to my family.

 

I wish my New Zealand family members lived closer. I’m sure they would have helped if the could. My sweet uncle even sent me money to help with my donation fund, proving that family doesn’t end at the state line. I’m so happy that I have the unwavering support of my sister and the friends that feel more like family. This whole thing has taught me that family does not just mean blood relative, but are the people who reach out and help you when you need it most.

 

I don’t want to feel like a burden. But I do.  And I hope no one ever has to feel like this.

 

 

If you’d like to help support me please visit my donation campaign page:

Christine Lilley’s Life Fund