All posts tagged chemo

Survivor’s Guilt: It’s a real thing

Let me start this post by saying how absolutely grateful I am that the “gold standard”, as the good doc called it, in treatment for Hodgkin’s lymphoma, ABVD, worked to kick my cancer to the curb, and has kept me in remission for an impressive 18.5 months. GRATEFUL.

So you may be surprised to hear me say that the only thing that tampers that gratitude is absolute, soul-wrenching guilt.

That is correct. Guilt. Commonly referred to as survivor’s guilt, the simplest way to explain it is that I feel guilty for surviving when I know so many people who haven’t. But there’s more to it than that. I feel guilty that I only needed four cycles of chemo, which equaled eight treatments, and ten days of radiation, which was so easy for me.

I know people in the small lymphoma support group I’m part of who have had first line, second line, salvage chemo, and stem cell transplants. The “gold standard” failed them, or they relapsed after achieving remission for a short period of time. Or they didn’t have Hodgkin’s, they had one of the (seemingly) seven billion subtypes of Non-Hodgkins. Chemo was tough for me, but a) anti-emetics (carefully re-adjusted after my first cycle) saved my ass, and b) it worked.

Guilt.

Radiation, so easy for me, has caused them to get mouth sores, lose their appetite, lose their taste buds… I could go on, but if you read this blog you’ll know the only side effect I had from radiation was being a little sleepy. I honestly thought – before joining this group – that radiation was pretty easy for everyone. It’s just strong x-ray beams, right? So I feel like an asshole for making that assumption, and even for writing in this blog basically saying, ‘la-dee-da radiation was a walk in the park.’

Guilt.

Some of them know their cancer will come back, no matter what. I know that mine could. But it could also just be gone, forever. No doctor has ever said, ‘it’s just a matter of time til it comes back.’ So did I take myself too seriously?

Guilt.

Outside of this small lymphoma community I’m part of, I know people in my own family or my close friend’s family who have had much “worse” cancer battles than me. They’ve been in active treatment for literal years, or have had body parts removed, or have relapsed or been newly diagnosed with an aggressive form of cancer and are facing potential death.

Guilt.

I know it’s not logical. I know that none of these people that I’ve mentioned would ever wish my cancer would come back, or would’ve wanted my treatments to be any more difficult. I know all of that. But that doesn’t stop me from feeling the guilt. I know it’s common, though — so if you, too, are experiencing it, know you are not alone.

Feel grateful. Feel proud – you faced what many people consider to be their greatest fear, and are here today reading this! Feel humbled. Feel however you need to feel.

Just try to remember (and I will, too!) what I just said – feeling guilt is not logical. No one wants you to get sicker, or have a worse time of it – whether or not you had one surgery and no chemo, one cycle of chemo, chemo and radiation, immunotherapy, just radiation, or were miraculously cured by the good Lord himself with no treatment at all – you do not deserve to feel guilty.

Right now. Tell yourself, ‘fuck this guilt. I don’t deserve it. I deserve to feel HOWEVER I DAMN WELL WANT TO FEEL, and guilty is not it. I feel like a caring, empathetic person who extends her (or his!) heart out to people in my life. I feel sympathy. I feel empathy. I DO NOT FEEL GUILT.’

There. Feel better? Repeat whenever guilt tries to sneak back in. xo

 

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by cheyennechartrand on February 9, 2017  •  Permalink
Posted in blood cancer, cancer, friends and family, hodgkin's, hodgkin's disease, hodgkin's lymphoma, lymphoma, young adult cancer
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Posted by cheyennechartrand on February 9, 2017

https://dancingwithdrhodge.wordpress.com/2017/02/09/survivors-guilt-its-a-real-thing/

Two years later

Two years ago today was my first chemotherapy treatment. Since finishing treatment and being declared in remission, I’ve made sure to thank the people who helped me get there. But I realized I never thanked the girl who sat in that chair on January 9th, 2014, scared out of her mind, trying so hard to put on a brave face for everyone around her. Today, it’s her turn.

To the girl in the chemo chair,

Thank-you. Thank-you for loving yourself enough to save my life.

Where do I even start? I want you to know that you possess a deep inner strength. You didn’t know it on that day, but you proved it in spades. Over and over again — you dug deep and found it when you needed it the most. Every single one of the things I’m going to thank you for is an example of a time you used that strength.

Thank-you for getting out of bed and coming to this room every two weeks, even when every single part of you said, “no” because you knew what would happen.

Thank-you for coming back even though the first treatment made you throw up all night and the second was worse. Thank-you for not giving up when you were slumped over the toilet dry heaving and sobbing, trying to figure out how your whole life had been tipped upside down so very quickly and wondering how you’d make it through the subsequent days and nights.

Thank-you for wiping your tears and putting on a brave face for the nurses in this room even though you’d cried all the way there, knowing that the treatment that was saving my life was, temporarily, ruining yours.

When your hair started falling out, you sat down on the couch and said, ‘this isn’t fucking fair.’ It wasn’t, but you were so brave, letting Evan shave your head only a few minutes later. Thank-you for doing that, instead of watching it slowly fall out in clumps. Thank-you for shaving it again when treatment was completed so it would grow in nice, even, and thick for me.

Thank-you for every single time you put on your running shoes and forced yourself to put one foot in front of the other, on the treadmill or outside. It was so hard but reminded you you still had a spark and that cancer couldn’t control you. I remember that when I want to quit today.

Thank-you for sticking that needle full of Filgrastim in your stomach every night for five nights per cycle. You knew it would cause unbearable bone pain, but you did it anyway because you knew you needed it to keep your treatment on track.

Thank-you for forcing nine plus pills down your throat every single morning. You kept yourself healthy so you could get through your chemo without any setbacks at all. You might be interested in knowing that I avoided taking pills for months afterward, because I just didn’t want to do it anymore.

Thank-you for going to the ob/gyn every month and letting her stick you in the tailbone with Lupron to keep yourself in medical menopause so that I could one day have children if I so chose.

Thank-you for laying still on the radiation table with your face snapped down, breathing through it and praying that you’d made the right decision in ‘treating the now’ and it wouldn’t come back to bite us in the ass decades later.

You didn’t know it yet, but when you took that photo, on that very first day of chemo, you were entering your cocoon. Thank-you for staying in the dark instead of clawing your way out early. I know how scary it got, especially when you couldn’t see the light at the end of it. But every minute you spent in the dark formed who I am today, and I wouldn’t change any of that person.

Thank-you for not giving in when you looked in the mirror and had no idea who was looking back at you. I know it was hard — you had no hair. Your long eyelashes disappeared. Your eyebrows thinned out. Your face was puffy from steroids and you gained 15 pounds. It wasn’t you. It was, in fact, the beginning of me.

I don’t miss you, but I love you and I respect you. I am so grateful for all that you did so that I could be here today.

Love,

me

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by cheyennechartrand on January 9, 2017  •  Permalink
Posted in blood cancer, cancer, chemotherapy, hodgkin's, hodgkin's disease, hodgkin's lymphoma, lymphoma, saskatchewan, Uncategorized, young adult cancer
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Posted by cheyennechartrand on January 9, 2017

https://dancingwithdrhodge.wordpress.com/2017/01/09/two-years-later/

Flashback Friday: Two Weeks Post Diagnosis

This entry originally appeared in my first blog, before “Dancing with Dr. Hodge” was created. I’ve been promising a move of all the old content to this forum, but kept putting it off because sometimes this stuff is hard to read.

This was a few weeks after the fine-needle aspiration that led to my diagnosis, but before the biopsy that the Cancer Clinic needed before starting treatment.

As Lymphoma Awareness month continues, take a walk with me into the mind of a newly diagnosed 25 year old who’s life was about to be changed forever. We were married just 16 months when we got the news and it felt like our whole lives were crashing  down. We’ve picked ourselves up and dusted off, but we aren’t the same people we used to be. To risk sounding very cliche — we’re stronger at the cracks.

But believe me when I say I’m not without scars from this battle.

 

The same, but different

We got the news almost two weeks ago now.

World tilting, everything-you-know-about-your-own-life-will-be-shaken-up-in-an-instant news. Which is weird, because it was literally four words.

“You have lymphoma. Hodgkin’s.”

“WHAT. THE. FUCK.”

That was my mind, I didn’t actually say that. What actually happened was much less dramatic, and far less bad ass than I would’ve liked. My eyes filled with tears, and the damn water kept coming, so in an instant they were streaking my cheeks in a really un-brave kind of way. I think I said something like, “what?!”

Not an “I didn’t hear you” what. More like, “this is a joke, right?” kind of what. Because there’s no way I have cancer. I’m 25. I’m a health nut. I eat clean 85 percent of the time, the gym is my happy place and I run for FUN. I’ve never smoked a cigarette, I’ve always worked indoors in clean environments — and — this is the kicker — I feel FINE. I feel healthy. I just ran four and a half miles without breaking a sweat. How the fuck do you expect me to believe that I have a fucking life threatening illness?!

But apparently, I do. Apparently the swollen lymphnodes that wouldn’t go away weren’t a result of an infection — which, in spite of doing everything “right”, I’ve gotten a ton of in my life. They weren’t something that I could choose to get removed in a few months, or a year, if they were “bothering me”.

They were fucking cancer. Are. They are fucking cancer.

But in spite of my brain knowing this, I still cannot wrap my head around it. Because again, I FEEL FINE. I go to work every day, just like before. I come home and make dinner and watch Netflix with my husband. I play with my dogs. Nothing is different in my life. Except this knowledge — knowledge that doesn’t mesh with how I know I feel. For a logical person, it’s impossible to make the connection between my brain and my physical self.

And yet I keep having earth-shattering realizations. Just living my life, then I catch a glimpse of myself in the mirror or something stupid and it comes rushing back.

“You have lymphoma. Hodgkin’s.”

Everything is the same. But it’s so very different. I have a long road ahead of me, but I don’t know what it looks like yet. I don’t know what sort of treatment I’ll get, because first I have to go get one of my fucking lymphnodes cut out WHILE I AM AWAKE, so that the cancer clinic can “confirm” my diagnosis.

How. Fuck. Just fuck off. I’ve actually thought to myself, “I could just not do that. I could just carry on with my life.” Logically, I know I can’t actually do that. But it’s really tempting some moments, to just stick my head in the sand and pretend like I’m just like every other 25-year-old who doesn’t have cancer. (I am in no way saying I am the only 25 year old who does, by the way.)

I know I’m lucky – Hodgkin’s has an excellent prognosis. I could’ve had a fucking brain tumour or something. But my fucking life is still turned upside down, and I have to haul this man I’ve only been married to for less than two years along for the ride — a fact that is simultaneously terrifying and comforting. Terrifying because people who have been together for years longer than we have, will allow a diagnosis like this to crumble their relationship. Comforting because he’s my best friend in the world, and nothing seems unfaceable if he’s next to me. Terrifying because I need that — I need his physical presence to make this bearable, and I’ve never needed anyone for anything before. It’s always nice to have someone there. But it’s never been a necessity. This, I need him for this.

Every day is the same, but different. It’s about to become so much more different, and for now, I’m clinging to normalcy like my life depends on it. I need to keep doing the same things, so I don’t spend 24 hours a day thinking about the fact that everything’s about to get so much harder.

I know I can do this, though.

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by cheyennechartrand on September 23, 2016  •  Permalink
Posted in awareness, blood cancer, cancer, hodgkin's, hodgkin's disease, hodgkin's lymphoma, young adult cancer
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Posted by cheyennechartrand on September 23, 2016

https://dancingwithdrhodge.wordpress.com/2016/09/23/flashback-friday-two-weeks-post-diagnosis/

post radiation – it does get better

When I was in the midst of radiation and I felt so bone weary, the nurses and radiation techs kept assuring me that I’d go back to normal in a few weeks. I smiled and nodded, but it seemed impossible that I’d be back to “my old self” (and by that I mean this strange mix of the pre-cancer me and the post-cancer me that now exists in this body) by the first week in August. I mean, I was just so tired – and no amount of sleep would fix it.

I’m happy to report that they were, in fact, correct. It happened slowly, so slowly I barely noticed it. But we went to a wedding the first weekend in August, and it wasn’t until I woke up the next day hungover and wanting to shoot myself in the eye that I realized I’d actually stayed til the end, and I didn’t remember yawning or having the urge to go sleep in a corner once.

My husband left to go work up north a week later. This meant that it became just me and four dogs, in a big (ok it’s normal sized but when it’s just me, it seems big!) house, all alone. This meant that I was in charge of dealing with everything that happened, because he was, quite frankly, just too far away to do anything about anything. (Besides that, he’s working 12 hour shifts. So on top of being too far away, he literally has no time.)

A month ago, I would’ve panicked. I would’ve been at my parents house so fast, because there’s no way my body or my mind would’ve been able to handle 3 weeks of being alone. I was too exhausted from radiation. Before that, I was too sick from chemo. Before that I was too sick from cancer. Basically what I’m saying is the fact that he’s left for work for an extended period of time, with no option of swooping home early if I ended up being sick, is a pretty good sign that our lives have adjusted to their weird mix of the-way-things-are-now and the-way-things-used-to-be.

I remember very clearly the first week after chemo (I had them on Fridays, this was probably the Tuesday or Wednesday) he was at work and I sent him a desperate text message: “I’m so sick. I can’t even stand up.” And I wasn’t exaggerating. I literally could not stay standing, my body just would not allow me to. I tried going to work that morning and ended up in a puddle on the floor. I got myself home, somehow. And he left work and drove two hours home to come take care of me, because at that point I was literally not able to take care of myself. Literally. Not. Able.

So this was January. We were fortunate enough that he was able to work relatively close to home for the duration of my treatments – from January until mid July. There were more days of rescuing. There were days we went to my parents house so he could actually stay at work for a whole shift knowing that someone was looking after me. For five days out of every 14, he came home from work (or did it before he left) and prepped a needle full of Filgrastim, and then stayed in the room and talked me through stabbing myself with it so my chemo could stay on track. (No easy feat. I’m not ashamed to admit that after the first few, I typically ended up in tears before I even attempted to stick the needle in because I knew what was coming.)

For three weeks out of four, on every shift that he didn’t leave before the crack of dawn (which he did for a week out of four), he either got up with our dogs and stayed up with them until I crawled out of bed hours later, or came home from working all night and stayed awake until I, again, crawled out of bed hours later. He sacrificed his own sleep and rest because I just could not do it.

What I’m saying is, I couldn’t have gotten through treatments if he’d been away working. Physically and mentally both, I could not have done it.

But here we are, he’s been gone for a little over a week now. He gets home on the 27th. I miss him terribly, but I’m doing okay. The house is clean, the lawn is mowed, the dog poop is picked up regularly. (Laugh if you will, but dog poop in a heat wave is something else.) Yesterday I ran my first 5 km since cancer. I’ve applied for jobs and went for interviews and I know, confidently, that I’m ready to go back to work full time. (I should find out next week if I got either of them. Cross your fingers for me!)  I get up with the dogs in the morning and stay up with them. I take the mountain dog on runs to tire him out. (He misses his dad terribly! That dog belongs to my husband. Haha.)

So what I’m saying is, it gets better. It gets better so slowly you might not even notice. But eventually, you’ll run a treadmill 5 k and realize you breathed normally the entire time. There’s no tumour squishing, bleomycin damaging, or radiation zapping your lung anymore. Your body has healed itself, the way bodies do, and you can do the things you used to do. You’ll get up in the morning at 7 a.m. and crawl into bed at 11 p.m. and realize you aren’t even “that tired”. Your hair will grow back. Mine is thick – I have a scar on the top of my head that was visible for the 25 years before cancer because I had thin, fine hair and no matter how long my hair was was, if it moved the wrong way, that scar was visible. You can’t see the scar anymore. Your eyebrows will grow back and you’ll get redemption for all that high school over-plucking when you go get them threaded or waxed or plucked and get to decide on a new shape, from scratch. You’ll go back to work, or you’ll work on finding a new job, or you’ll do both. Personally, I’ve dipped my toes into freelancing and I’m enjoying it, but I’ve applied for jobs in a few different fields with different organizations, because this hybrid of the old and new me wants to find meaning in my work instead of just a paycheque.

It gets better.

Am I still afraid of recurrence? Absolutely.  To be frank, I had nightmares about needing a stem cell transplant on Wednesday and Thursday both, this week. But there’s people out there that can help with that, too.

Physically, though. Your body will heal itself – you just have to trust it, which can be super difficult given that it decided to grow some cancer only a short while ago. But from my perspective, and I’ve been in remission now for almost four months, (well that’s wild), it will heal itself. Patience! And eventually you’ll find that you no longer need someone to take care of you. On that note – if you’re still in the stage where you do need someone to take care of you, please allow that to happen.

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by cheyennechartrand on August 15, 2015  •  Permalink
Posted in canada, cancer, hodgkin's, hodgkin's lymphoma, lymphoma, saskatchewan, young adult cancer
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Posted by cheyennechartrand on August 15, 2015

https://dancingwithdrhodge.wordpress.com/2015/08/15/post-radiation-it-does-get-better/

pushing through

I kind of wonder when I won’t feel like I’m “pushing through” to normal anymore. Like there’s always this dark cloud chasing me, and I have to keep ahead of it or Lord knows where I’ll end up.

I don’t mean I’m depressed, because I’m not. Stressed – absolutely. Most days I’m stressed to the max. But this isn’t a new situation. I just feel like my coping mechanisms sometimes go out the window, so all I’m left with is “lay in the dark and talk aimlessly to myself or Whoever could be listening, hoping for some miraculous change that I know full well is not coming.”

I don’t mean that I think it will never get better. I know it will. Life is a pendulum and it swings, and right now I’m – we are – just kind of on the low point in certain areas of life. It will improve. I know this. So why I can’t stop stressing about it is beyond me.

Maybe it has something to do with last night…

Last night was the Relay for Life in Regina, where I live. I waffled on going right up until we left because I just wasn’t sure I was up to it. I couldn’t put my anxiety into words, but as I was walking the first lap – by myself – with a bright yellow shirt on and a tag around my neck proclaiming that I’ve been a “survivor” for a whole 7 months – the root of my anxiety showed up.

I can never get away from this. This is who I am now. No matter what happens in my life, I will always be someone who had cancer. Of course I don’t have to let it define me. But I can’t pretend it never happened. I can never forget about the last seven months, nor the upcoming one where I get radiated and hope I don’t end up with breast or lung cancer in 20 years. My husband knows he needs to quit smoking now, because we can’t add in any more risk factors for me. Is that fair? Absolutely not. But none of this has been fair, because apparently life just doesn’t work that way no matter if you’re a good person or not.

Besides that, I stood among all of those people and I felt like a giant fraud. In spite of the fact that ABVD is not easy, and I had no freaking clue what these people’s stories were. Everyone had hair, I can tell you that much. I was the only one in my little cap to keep my pretty-much-still-bald head warm But I felt like I did not deserve to be there. Like I was positive all of these other people deserved all this clapping and celebration and I should probably just go back where I came from.

Anyway, as I was strolling along that track it hit me that life is, to be frank, entirely different. And it won’t ever be the same, even long after my hair grows back and my energy levels are back to pre-cancer Chey. (Today, by the way, they are at “slug-in-the-mud” level and we didn’t even stay for the whole event.) And I’m not sure I like that. In fact, I know I don’t like that.

I feel like I’m going to spend the rest of forever “pushing through”. There are days where I’m sure this whole cancer debacle was for the good, and that I’m supposed to use what I’ve learned and how I’ve changed to be better at helping others. But there are also days where I just don’t fucking want to. I want to go back to the way life was. I wasn’t a particularly bad person before. I mean, I wasn’t winning any Nobel peace prizes, but let’s be honest – I’m still not. I’m just a little more friendly, and I try to force myself to be more outgoing, especially toward people who are in similar situations.

But again, let’s be honest – that’s not natural for me. I’m a giant introvert. I’m happiest when I’m at home, not dealing with strangers, not putting my own feelings out into the world verbally. (I can easily write in this blog, but I often struggle with the urge to delete the automatic notifications on my Facebook page. Like I really don’t want people to know that my life is not all roses, because I’m supposed to be super excited and happy all the time because no more cancer! Right? Besides that, do people even give a shit about my life? Probably not. I just write here and pretend it goes to nobody. Because if I don’t write here, I’ll lose my shit.)

Anyway, today I’m anxious and frustrated and stressed out and I really wish there was a magic pill I could take to make all of this go away. I can’t compartmentalize like some people can, so these negative emotions effect my entire life. Today, as mentioned – I’m exhausted. I know this is a result of aforementioned negative emotions. It has nothing to do with not sleeping enough. (Though I should probably start taking a multi-vitamin again, and an iron supplement. I’ll tell you a story about the iron supplement and how it tricked me into thinking I was healthy just before diagnosis, another time.)

Trying to find a way to push through, but at only seven months in, I’m already running out of ideas how to do that. I don’t want pity. And I don’t want people to tell me to find my ‘new normal’ because, to be honest, I hate that fucking phrase. I liked my life the way it was before, thank you very much. At least before I could deal with my issues without becoming a walking zombie. I don’t relish the idea of the rest of my life – which is hopefully a really long fucking time – being something that feels like it belongs to someone else.

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by cheyennechartrand on June 20, 2015  •  Permalink
Posted in cancer, hodgkin's, hodgkin's disease, hodgkin's lymphoma, lymphoma, saskatchewan
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Posted by cheyennechartrand on June 20, 2015

https://dancingwithdrhodge.wordpress.com/2015/06/20/pushing-through/

normal? not quite

I’ve been pretty focused on getting my life back to “normal” in the last month and a half. Like I mean I try to forget that chemo and cancer even existed. (That’s laughable when I have an old man brush cut.)

Monday’s scan was just that, a scan. The techs are pros at not revealing any information whatsoever. But this scan differed from the first one in a significant way: during the first scan, I bargained with God (or whatever deity you do or do not believe in) the entire time. “If You just let this scan be clear, I’ll do whatever You want for the rest of my life.” “I realize it will be a miracle if one treatment makes my cancer disappear, but I promise I’ll tell everyone You did it.” Etc. Etc. Etc.

On Monday, I felt oddly calm. There was a little small chat with God (or related deity), and it went a bit like this: “Please give me strength for whatever this scan says. Don’t let me end up in a puddle on the doctor’s office floor if there’s still cancer cells. Help me to be strong enough to endure the last four rounds if I need it. Help me to be brave if I end up needing radiation. And Lord, please help me handle it if my hair starts falling out again.”

I’m so afraid of that. I’m honestly so attached to this inch that I’ve gotten in the last month. I’m always rubbing it LOL. It’s ridiculous. But I know full well if I need the last two cycles, it will fall out again. ABVD is a bitch. It spares no hair. It’s so damn hot out now, wearing a wig results in so much sweating, it’s pretty gross. I’m also kind of tired of sunburning the top of my head when I don’t wear anything (like when I’m sitting in my back yard pretending I never had cancer.)

But for the most part, I laid on the table for 20 minutes with my arms above my head and I had time to realize that I’d be okay. If the scan isn’t clean, I’ll just finish out the treatments. The chemo worked. It just might not have been quite enough to blast it all. So it’s not the worst thing to get more. It’ll still work the same way. If it is clean, well, thank you Lord, I’ve had enough of this cancer business to last me a lifetime.

Anyway, I veered way off the original idea for this post talking about that scan. Like I said, I’ve been trying to get my life back to ‘normal’. But after spending a day doing ‘normal’ stuff, I’m quickly reminded that my body has not rebounded yet. The exhaustion I feel after spending a day doing ‘regular’ stuff is a stark reminder of everything I’ve been through and will continue to go through. Building oneself back up is not an easy process.

For example: today I woke up around 8:30. Around 10 I did about 2 hours of work – working up some question lines, a couple interviews, a phone call which resulted in leaving a message, sending some emails. Nothing too taxing. (The old days would see me doing that in an hour, then transcribing everything, powering through four articles and still finding time for a leisurely lunch.)  Then I figured I’d better dust my house, because good Lord I had apparently not dusted since ’92 — so anyway, I dusted. I started laundry. I made supper (which was delicious and well fitting of my new nutrition motto #eattherainbow). My husband and I had plans to go to the gym tonight, and as much as I said I wanted to, I’m actually so freaking tired. I was almost nodding off eating the food I was so proud of, and I’ve been seriously considering going to bed for the last hour (and it’s only 9:30). Mid-way through the day I thought “boy, this is a great day. I feel so normal, doing all of this.” Short lived, apparently.

In my old life, I’d get up at 6:30 or 7 for work. I’d get ready for work. I’d leave the house around 8:30, sometimes earlier. I’d work all day, getting home no earlier than 5:30. I’d make dinner, eat it, clean it up, go to the gym or clean the house or something. I might spend an hour watching TV from 9:30 to 10:30, then I’d go to bed. I’ve never been a person to fall asleep right away, so I was probably only sleeping from 11, 11:30 til 6:30. Now I sleep at least 9 hours per night, and after a few hours of ‘normal’ stuff, I’m exhausted.

So in spite of wishing for it, my life is far from ‘normal’. I’m preparing myself for the worst, ie. that I’ll be back on the chemo train by next Friday. (I suspect my doctor wanted to see me next Wednesday because if I do need more chemo I can go back on the Fridays and be on the same schedule I was before.) But really, it’s all up in the air. I won’t know til I know, but in the meantime, I’m sure I’ll have many more reminders that things are not ‘normal’ in this household anymore.

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by cheyennechartrand on May 29, 2015  •  Permalink
Posted in cancer, hodgkin's lymphoma, lymphoma, saskatchewan
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Posted by cheyennechartrand on May 29, 2015

https://dancingwithdrhodge.wordpress.com/2015/05/29/normal-not-quite/

2 weeks and 3 days post chemo

First of all — I think my hair is growing! Just before my last chemo I noticed that I was pretty much bald on top. I wasn’t sure if the hair on top had just kind of rubbed off because of almost always wearing some type of head covering or what, but regardless of the “why” behind it, I had a giant bald patch. I was like an old man. This is what led to me getting the wig, but you already know that story.

Anyway, I am pretty sure that bald patch has filled in rather nicely since I shaved the fluff I had. I asked my husband to make sure and he agreed, but then, he might just be being nice. Either way — it’s a nice thought that my hair may be coming back so soon. It’s always grown really quickly – like I was the type if I had a short haircut I could guarantee needing to cut it every six weeks to maintain the style. (I never did, by the way. Who the hell can afford to get their freaking hair done every six weeks?! Not I. Consequently I frequently had “bad” hair. But whatever, post chemo I am letting it grow for at least two years. It will be a wild mass of curls and I DON’T CARE because it will be HAIR.)

The secondary proof comes in the fact that I had to shave my legs the other night. You couldn’t actually see the hair, so I suppose I didn’t have to shave it, but I felt it and it was enough to drive a person crazy after having no hair for quite some time.

But enough about hair growth. I’ll post a photo once I hit a month post chemo and we can really compare the difference then.

The point of this blog post was twofold: I want to give fellow cancer survivors (especially ones that are relatively young, like myself) some advice, and to expand on why this advice is important.

Get on social media, particularly Instagram. I rarely used Instagram before this whole cancer mess blew up my life, but since I’ve been diagnosed I’ve used it to connect with other fighters around my age — some are post chemo like me, some are still in chemo and I’m able to help them through the way that other fighters who had completed chemo before me, did for me. I can’t even tell you how helpful it is to be connected to people who literally know exactly what you are going through.

A perfect example happened just last night. The first HL warrior to begin following me (after I posted a photo about eight or ten weeks into treatment — I wish I’d done it earlier! — and hashtagged it #hodgkinslymphoma) posted a photo and her caption talked about how difficult life was, post-chemo. Several fighters — myself included — commented, letting her know that we absolutely understood.

I finally felt normal. I felt like it was okay that I was struggling so hard with trying to get my life back. Post chemo might be harder than treatment. At least when you’re actively taking chemo you have an “excuse” of sorts for being exhausted all the time, for the weight gain, for looking like a bag of shit, for not being able to work full time …. the list goes on and on. But once you’re done, if someone asks you something like, “what do you do for a living?” it becomes difficult to explain that you’re really not doing much.

It becomes frustrating that you’re still struggling with the weight you gained when you were taking hefty doses of steroids. (Some gals get prednisone, I got dexamethasone if you recall.) I’m still in medically induced menopause because sadly it doesn’t just “go away”, and anyway, I’m probably going to go for May’s shot because what if my scan isn’t clean and I need more chemo? It’s a possibility. One of the “side effects”, if you will, of menopause, is that your body fat redistributes and settles right around your fucking gut. So I have a stomach, a spare tire; a pile of fat around my abdomen that I have never had in my life and to say I hate it is putting it extremely mildly. I know, how vain of me, but this blog is my outlet to be completely honest, and be honest I will. I’ll walk around with no makeup and lots of days I’m fine with no hair too, but I cannot handle when my pants are cutting into my gut. It just makes me feel gross.

We just started — as in we’ve went twice — going back to the gym as well, and I cannot believe how weak I’ve gotten. Before all of this cancer mess blew up my life – because I will always compare the “before” – I was making significant strides in becoming much stronger. All of that, and then some, has disappeared. I know very well it will come back. It’s only natural. The human body will respond to repeated muscle exhaustion by eventually making those muscles stronger. It will happen. But it doesn’t take away the sting. I walked out of that gym completely dejected the other night. My fantastic husband — who also functions as my trainer, my motivator, and my spotter when I’m deathly afraid that my weak ass arms are going to drop the bench press bar right onto my barely existent boobs — told me very sternly that I couldn’t take it personal because it would lead to me not wanting to go back, and he’s very right. So I’m trying to lighten up, go easier on myself.

Additionally, one of my favourite things in the world to do is run. I find it to be a real stress reliever, and I get a real feeling of accomplishment when I beat a PR. But how the fuck am I going to beat any PRs when my lung function is a fucking disaster from the bleo? I get out of breath so fast, and then I get all panicked. I never panicked about being out of breath before, I just pushed through it. I guess staring death in the face in the form of a cancer diagnosis makes you a little more selfish about life in general, and part of life is obviously being able to fucking breathe. So that’s a thing — both the terrible lung function and the absolute fear that comes with knowing that I am not getting enough air. I know my lung function will improve because like any other muscle, I have to build it back up. What I don’t know is if I’ll ever “get over” the new set of fears that are part of my life. So I’m pretty pissed off at cancer for taking away one of my favourite things. I still do it, but it’s absolutely not the same.

Lastly, I’ve become kind of obsessed with “what happens if my scan isn’t clean?” I wonder if I’ll just finish out my two cycles of ABVD or if my doc will put me on something stronger. (Please no — I could barely handle ABVD. Ugh.) I’m deathly afraid of what happens if I relapse, because I know what comes next. (It’s called a stem cell transplant and it does not fucking sound pleasant.) Sadly, the downside to folliowing so many fighters, is that I know very well how high the chance of relapse is. Hodge and his merry band of lumpy lymphies are a real persistent bunch of little fuckasses.

I know, I know. Think positive. That’s going to be what absolutely everyone who I actually know in real life is going to tell me. So I’d like to stop you here. I am thinking positive. I believe wholeheartedly that my scan will be clean. But I am not the type of person to live with my head in the clouds, never have been, and I need to be prepared for the chance that it won’t be. A PET scan is much more sensitive in terms of detecting Hodgkins than a CT. My mid-treatment scan was a CT. It showed good news, but what I’m saying is if I would’ve had a PET, the picture may not have been so rosy. It still would’ve been good because shrinkage is shrinkage, but it might not have seemed so significant.

The real point of this, though, is to tell other Hodgkin’s (and any other cancer!) fighters that the post chemo breakdown is absofuckinglutely normal. You don’t have to feel bad for having it. Your life is just different now, and it’s natural to mourn that. I keep telling myself, ‘this too, shall pass.’ Just like the 17 weeks of treatment did. At the beginning and in the middle, I couldn’t see the end and it felt like it would never be over. . but here I am, post chemo, still breathing.

Some tips to connect with other fighters on Instagram: follow @thelymphomaclub. (I haven’t done this, but it’s a great place to start.) Use hashtags like #hodgkinslymphoma #lymphoma #hodgkins #hodgkinsdisease #lymphomafam (it’s a thing!) and, my personal favourite, #fuckcancer.

You can find me at @_cchartrand

Stay tough, warriors. (Which, by the way, I plan to ink once I get the all clear from my doc. Warrior, with the violet ribbon, to remind myself that I’m a fucking badass bitch for surviving this, and so are you! Props to one of my fellow fighters on Insta for the idea, though!)

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by cheyennechartrand on May 12, 2015  •  Permalink
Posted in cancer, hodgkin's, hodgkin's lymphoma, lymphoma, saskatchewan
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Posted by cheyennechartrand on May 12, 2015

https://dancingwithdrhodge.wordpress.com/2015/05/12/2-weeks-and-3-days-post-chemo/

post chemo paranoia

Things they don’t tell you about being done chemo: you will immediately become even more paranoid about every little ache and pain.

A few nights ago, I had a pain in my chest. It felt like I’d swallowed something sharp and it had gotten stuck chest-level. It wasn’t a constant pain, just like it kept shifting and poking me. Except I hadn’t eaten anything sharp. Pretty sure I ate an orange or something. Like an orange can poke you, right?

And my chest is where my cancer started. It’s the home of my original tumours. (I feel like there’s a cheesy eventplex name in there: chest wall, home of the OG tumours.) So my thought process, every time the pain stabbed, was something like this: “I have to go get more chemo. It didn’t work. The tumours are still growing. They’re so big now they’re causing me discomfort.” (Which never happened before, for the record. I actually had little to no idea that there were tumours there until I developed a cough in early December.)

Additionally, I’ve been coughing for over a week now. I know it’s just a cold because it’s been accompanied by the typical runny nose, and I can feel mucus (gross I know) moving whenever I get a good hack in. I can’t shake it, but I feel like that’s probably because my immune system is still shit. But again, sometimes my paranoia will override my logic and I’ll start thinking how the chemo didn’t work at all.

And sometimes I get a sharp pain in my neck region, right about where my secondary tumours were. This has been happening the whole time. It’s not even common enough for me to think about when it’s not happening, but when it does, I guess you can guess where my thought process goes.

I know that my fears of the chemo not working aren’t true, because I had a CT mid-March and it showed “significant shrinkage.” Obviously the chemo worked. There’s no way it would’ve started working and then all of a sudden just stopped and the tumours grew back. Right? That’s crazy talk.

But going for treatment kept my paranoia at bay. When I was getting drugs pumped into me every two weeks, I was able to shove my fears down with the knowledge that there would be more chemo to kill whatever it was that was causing me pain. Now that I’m done (and I haven’t even went two weeks since my last treatment yet!) I feel like I have nothing to combat my fears with. Except logic. And apparently it fails me when I’m in any sort of pain.

There is bright news, though. Two days ago, I woke up at regular person time (8 a.m. or so), stayed up til normal person time (11 p.m. or so) and didn’t take a nap! I mean, by yesterday I apparently ran out of all that energy because I fell asleep on the couch watching TV at 9 p.m., but the point is — it was the first day in forever that I hadn’t needed a nap. Small victories! I’ve started doing a little freelance print work – just a few stories a week, but it’s better than nothing. I’ve went for a few (short) runs with my dog. I’m trying to get my life back to normal.

There’s changes, of course. My life will never be the “same” as it was before cancer. I think it will end up being better, because I think I’m a much nicer, more patient, more generous person now. So, in spite of all my post-chemo paranoia, it’s not all bad. I just can’t wait to lose this chemo belly 😉

My PET scan is scheduled for May 25, with my follow up with my oncologist June 3rd. So in less than a month, I’ll know if my paranoia is just that.

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by cheyennechartrand on May 6, 2015  •  Permalink
Posted in cancer, hodgkin's lymphoma, hodgkins, lymphoma, saskatchewan
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Posted by cheyennechartrand on May 6, 2015

https://dancingwithdrhodge.wordpress.com/2015/05/06/post-chemo-paranoia/

crumpling

I got some great news today. Or at least it should’ve been great news. I’m all done chemo, pending the results of my PET scan at the end of May. One would think this would be the best news ever, and I’d sleep like a baby knowing that I’m nearing closer to the end of this battle. I did my four months of poison, it worked, and now our lives can go back to normal.

So then why do I feel like I’m closer to crumpling than ever? I have this mental image of a piece of paper, and it’s all wrinkled and crinkled and it’s been stepped on and has holes and it keeps trying to stand up but the wind keeps knocking it over. And all the stupid piece of paper really wants to do is get thrown in the garbage, because it knows it’s useless and it can’t be written on or used for anything other than a firestarter or something. But no, it just keeps trying to stand up, all pathetic like, because it feels like it’s not allowed to give up.

Tonight, I am that piece of paper.

I recently wrote about accepting where I’m at and getting past the anger of being diagnosed with cancer at 25. This is definitely still the case. I still feel very much like I’ve accepted that this is what I’ve been handed and I need to find a way to deal with it. But somehow, tonight, all of my life stresses are too much.

My dogs got into a fight earlier, and my small one ended up at the vet because the bigger one of course won. He didn’t need stitches or anything but he’s got a nasty gash on his chest and it rips my heart out every time I look at it. I feel like a failure as a dog mom. It cost us nearly 400 dollars — and of course it’s worth it for the safety of our fur children — but we certainly couldn’t afford it when we’re three months behind on our mortgage, my student loans and my parents are paying for a vehicle that we’re driving right now. On top of it, the whole thing was caused because we’re at my parents house and their crazy neighbour started yelling at my husband about our dogs barking when they weren’t. He was trying to stop them from going over to the fence to start barking and I don’t even know how it went down because I wasn’t paying that close of attention but all of a sudden there was growling and fur flying and yelping and the little one had to go to the vet and now I’m sitting up in the middle of the night just watching him breathe because I’m worried he’s way sicker, worse off, whatever, than the vet let on and if anything happens to my dog I absolutely will crumple.

I feel like I can’t fucking breathe with all of the shit going on.

I’m worried that people are judging us, because I’m done chemo but we still have a GoFund me account set up.

“She can go back to work any time now.”

Except, I can’t. I’m still so sick. I’m in the middle of a cycle of Filgrastim and my entire body aches. My joints feel like they’re on fire. I have a cold that I just cannot shake which makes even breathing difficult.  And I might not be done at all — it all depends on the results of my PET. The thing about a PET is that they want your system to be clear of chemo so that they can get a better picture. So the month between treatment and scan (scheduled for May 25) makes sense. They need to know exactly what we’re dealing with here, without poison swirling around in there complicating things.

I mean, I feel like it might be over. I feel like it might’ve worked. I’m not so worried about needing more. It’s just that now that getting through each consecutive treatment isn’t my focus, the rest of my fragile card house decided to fall in on me I guess.

I haven’t spoken to my best friend, properly, in over a month. I literally do not know how to explain to anyone what’s going on in my life. I keep trying to put on this brave face, my husband and I keep telling each other it’ll be okay, it’ll work out, because it always does. But it doesn’t always, because if it always worked out I doubt I’d be laying here wondering how we’re ever going to catch up on so many months of bills, or how my life is ever going to go back to some semblance of “normal”. I wouldn’t be sitting here at 3 a.m. writing on a stupid blog that people probably don’t even want to read because I don’t know how to explain to anyone how I can be so scared and worried and stressed out when I just got such great news.

And my husband. I don’t know how he’s doing. I feel so disconnected from him tonight and that’s so rare. We’re usually one of the most in-tune couples you could ever imagine, but when something like this happens — with the dog, I mean — it’s like we’re on different planets. I don’t know what’s going on in his head but I do know he spent a lot of time sitting outside tonight by himself and it’s usually me who runs off and does that. He’s probably okay. But maybe I’m putting too much on him. I keep nagging him to do stuff — call the accountant, we need to find out if I can get my tax return so we can dump it onto some bills; we need to make a plan to pay off the mortgage (hahaha); and then stupid stuff like call the gym because I want to go back there and we owe them money too. Like what the fuck.

I’m terrible.

I know, make some of the phone calls myself. But I forget things so easily and I’m so easily overwhelmed — the other day I ended up crying over fucking pizza. Honestly. I wish I could just level out, I need to be strong enough to fix things before we’re living in a fucking box or something.

But I don’t feel strong. I feel like the paper. I feel like I keep screwing everything up, and it’s just awful. I’m so close to the end, but it’s so far from the end. My life is just so fucking unrecognizable. And I keep striking out trying to find some form of “normal” — which explains the whole, ‘call the gym, we’ll pay them’ because maybe if I can be a normal person and go to the gym and do something with myself I can forget that everything else went to shit in the last four months and I have no idea how to fix any of it.

Overwhelmed. And my brain keeps coming up with new shit to worry about.

“Mortgage.”

“Student loans.”

“Dog is injured.”

“You need to get back to work.”

“Scan’s probably not clear.”

“People are judging you, you know.”

“We can’t afford that 20 dollar pizza but I don’t have the strength or the energy to cook anything else.”

“My husband is barely speaking, what’s going on in his head?”

“I haven’t talked to any of my ‘friends’ in months.”

“Do I even have any friends?”

Crumpling. Yet I know the stress is not helping. I know the stress is just making me sicker, so I’m stressing about being stressed. Because that’s what I do.

I contemplated shaving my head again tonight because what’s left of it is too long and I know that when it grows back in it’ll be all different lengths. Besides that, it’s all fuzzy and getting matted from where I wear a hat or a wig all day because I’m self conscious. But I couldn’t do it. I’m not ready. I hate this. I’m not strong enough for anything.

Fuck. I just looked at the pillow my dog is laying on and I can’t fucking tell if it’s blood or a fucking stupid pattern on the pillow case. I just want to throw up everywhere. Or cry, which I’m doing now because why not right?

Please, someone, just light a match. This piece of paper will never be the same.

http://www.gofundme.com/nnkzxs?fb_action_ids=10153115762458255&fb_action_types=og.shares&fb_ref=fb_mb_a

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by cheyennechartrand on April 30, 2015  •  Permalink
Posted in cancer, hodgkin's lymphoma, hodgkins, lymphoma, saskatchewan
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Posted by cheyennechartrand on April 30, 2015

https://dancingwithdrhodge.wordpress.com/2015/04/30/crumpling/

the 5 stages of grief

Grief is defined in some cases as a “natural response to loss.” Most often we associate it with the loss of a loved one — we grieve their death.

But grief can come from the loss of other things, as well — like the loss of a certain carefree lifestyle that comes before a cancer diagnosis. Terminal or not — and I am so grateful to have been diagnosed with a cureable type — cancer changes you. For better or worse, you’re a different person at the end of the battle than you were at the beginning.

I feel that a lot of my personality changes have been good. For the most part, I stress a lot less. I try to be much more empathetic. It takes a lot more to annoy me these days. I’ve realized the importance of spending time with those who care about you. I now know without a doubt, risks are for the taking, because you just never know what tomorrow could bring.

But there are of course parts of my “old” life that I miss. I miss the ignorance I had of how life can change in an instant, and how ‘eating healthy and exercising’ is not the cure (or prevent)-all. I miss the lighthearted friendships I had — all of my relationships are forced to be much deeper now, because I just can’t stand superficiality. I can’t even do small talk anymore. Gossip drives me up the wall. And I get irrationally angry when someone who is perfectly healthy complains about their “terrible lot in life.” I know that’s not fair, but it’s part and parcel of the “new me”. I don’t know if I’ll be like this forever, but for now — anger is my response to people who complain when they really should be opening their eyes and realizing how lucky they are.

So there are certainly times that I grieve for the things I’ve lost, the life that I used to have. I’ve been slowly moving through the five stages of grief for the last five months. Not everyone moves through the stages at the same rate, nor in the same order. For me, it went a little like this:

Denial: There was no fucking way that this was my life. How the hell can I have cancer? Even if it is a cureable type, I still had my moments at the beginning, just post diagnosis, where I was sure this whole thing was a giant mistake. I felt fine. I looked fine, especially after I had my cervical lymphnodes biopsied and that pesky lump had gone away. I certainly did not want to go through chemo. So I had my time of wondering, ‘if I just pretend I never heard this news, can I carry on with my life and have everything stay the same?’ Of course, you can’t stay in denial forever. Mine came to a screeching halt near the end of December after a doctor shoved a needle the size of a turkey baster in my tailbone to get a sample of my bone marrow. Kind of hard to deny you have something wrong with you when a doctor is sucking the shit out of your BONES. This is not a normal procedure, people.

Bargaining: I experienced bargaining pretty much right on the heels of denial. I laid awake many nights, talking to God, or whoever was listening, telling Him if he would just make this whole thing go away, I’d do whatever he wanted. My bargaining got particularly intense during my first PET scan, which I had after one treatment. I knew this would show everything, every dirty little cancer cell in my body, and I thought, ‘wouldn’t it be something if one treatment made all this fucking shit go away?’ I was fully ready to give all the credit to God, to be a walking miracle. But it was not to be — I wouldn’t have learned what I needed to learn, or changed in the way that I needed to change, if my cancer had gone away after one treatment.

Anger: I spent a LOT of time on anger. I flip flopped between it and depression, which is the fourth stage. But I was mostly mad. Mad that in spite of eating healthy and exercising, doing everything “right” to take care of my body, it had rebelled on me in this way. Mad that my hair fell out. Mad that chemo made me so sick. Mad that even though it made me sick, I had to go back for more. Mad that people who didn’t have cancer thought they could tell me how I shouldn’t waste so much time being mad. I thought I needed to stay angry so I wouldn’t give up.

Depression: My hair falling out was a big trigger of depression for me. It was then that I could no longer put on a face and act like everything was normal, because people could tell just by looking at me that it was not. I carried a lot of guilt, as well, over not being able to work. I’ve mentioned our financial troubles a few times on this blog. It was during my most depressed phases that I tended to put all the blame on myself — in spite of the fact that, like I said, we weren’t exactly in the greatest shape of our lives before all this started.

The fifth and final stage, which I can honestly say I got to about three days ago, is acceptance. (I’m not kidding, by the way. It really only has been three days.)

I think I’ve finally accepted that this is where I am right now. This is what life has handed me. There’s no reason for it. I didn’t do anything to deserve it. But it is what it is. I have cancer. I am being treated with ABVD chemotherapy every two weeks. In order to stay on a two week schedule, I have to give myself Filgrastim shots. Chemo sucks. Filgrastim sucks. They are both hard on your body and hard on your mental state. I have to take upwards of 8 to 10 pills a day sometimes, ranging from antibiotics and antivirals, to steroids and estrogen to keep my medically-induced menopause symptoms in check. I know it’s hard on my system, but I have an inkling that unchecked cancer is probably worse. 😉 I do not have any hair on my body (AND I AM NOT SAD ABOUT THAT), I have very little hair on my head. My eyebrows and eyelashes have thinned out terribly. I’ve lost weight then gained it. I can’t run as far as I used to. I haven’t been to the gym since September. I fall asleep watching TV in the middle of the day. I require a nap after an outing.

But all of these things are temporary, and I’m exchanging them for my life. A long, happy life with my husband and our furkids, and maybe one day real kids.

I’m not sure if acceptance was brought on by knowing that after Friday’s treatment, I get a break until I know what my scan results are. I’m a bit worried if they aren’t great and I have to finish out the last four treatments I’ll be right back at the flip flopping between anger and depression. But for now, acceptance is good. Acceptance has freed up my mind to think about other things — like life after cancer and what that will look like. I’ve realized that cancer is just a part of my life — albeit a very large part, at least right now — but it does not define who I am.

Of course, it has changed me. Like I said, it changes everyone. If you’ve had cancer and can honestly say you’re the exact same person afterwards, I think you might be lying. But acceptance is a nice change of pace from being pissed off all the time.

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by cheyennechartrand on April 22, 2015  •  Permalink
Posted in cancer, hodgkin's lymphoma, hodgkins, lymphoma, saskatchewan
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Posted by cheyennechartrand on April 22, 2015

https://dancingwithdrhodge.wordpress.com/2015/04/22/the-5-stages-of-grief/

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