My Battle With Leukemia

To the reader; this is my first hand account and cathartic release of everything I felt before during and after my battle with leukemia with an update 2021 at the end.

I decided to write something about my battle with cancer. As most of you know I have been very open with my battle on my twitter account (@erincandy) since I was first diagnosed. I  made the decision to be open about it on social media so that I could spread awareness and maybe even help others who are diagnosed with cancer at a young age. I’ve met some people through twitter who are battling the same kind of leukemia as me and I’d like to think we help each other through it. Social media can be great for that kind of thing. so even though I’ve always openly talked about what I’ve been going through with my cancer battle, I kind of just wanted to put my whole story in one place, so here it is. I’m going to include pictures that I’ve documented throughout the last year. Some might be disturbing, but I hope in the end this is inspiring for  anyone out there who might have to go through the same thing.

It all started in late October 2012, around Halloween actually. I was in my third year of university at UNBSJ, I was 24. I began noticing bruising on my body but anyone who knows me knows I am the clumsiest person on the planet so that really wasn’t anything I was concerned with. I could trip walking up the stairs and bruise my legs and think nothing of it. Then the bruising began popping up in more places, without banging into anything, and the bruises weren’t going away. It started with my legs, a small bruise here and there. Then the bruises got bigger and bigger and wouldn’t go away. Every time I banged myself on something, bam instant bruise. A co-worker poked my arm and it bruised instantly. This is when I started to get a little concerned, this was around mid November. So naturally I decided to do what any rational 24 year old does: diagnose myself with WebMD. By this time I was convinced I was dying (of course I’m a huge hypochondriac any ways. headache? Brain cancer! cough? Ebola!) so I was taking note of any other weird symptoms. I was starting to get really tired all the time, I was having weird night sweats, I was having heart palpitations. I entered all these symptoms into webMD while I was at work one day and the first thing that popped up was Leukemia. YUP I was definitely dying. But we all know webMD always tells you that you have cancer no matter what. I told my best friend Lacey that I was pretty sure I was dying from Leukemia and she told me to quit trying to diagnose myself on the internet that I obviously didn’t have cancer. We actually laughed about it later that weekend. I realized how ridiculous I sounded and maybe thought I was just anaemic. I went to a friends birthday party that weekend and had a good laugh about hypochondriac Erin who always thinks she is dying of some mysterious illness.

the last selfie before diagnoses!

I didn’t tell my parents about the bruising at this point because I knew they would just think I was out falling down all the time like I usually do. I tried to ignore it and planned on calling my doctor to make an appointment. I just kept on living my life, I was still going out with my friends and focusing on university – the semester was almost over. There were 3 weeks left and I just wanted to get through it. But my hypochondriac self downloaded the webMD app and kept putting in my symptoms and it kept telling me I had Leukemia. I was starting to get convinced but at the same time I didn’t want to believe it. I’ve never heard of anyone my age getting Leukemia, I thought it was usually just children or the elderly. But the bruises kept growing. My legs were covered in them by this point. They had spread to my arms, my back, my sides. I was so tired at this point I was starting to miss classes because I couldn’t get out of bed. I definitely knew something was wrong so I finally showed my mom who was a nurse. Now I know what you’re thinking “Your mom is a nurse and you are just showing her now?” well I tend to overreact to every injury and so my mom never believes me when something is wrong. Broken foot, chipped knee cap, both took some major convincing that I wasn’t just being a hypochondriac. (She felt bad about those)

The bruises

So I finally showed her the bruises and told her I was 99% convinced I was dying from cancer in the most dramatic fashion possible (naturally) she told me I was crazy and probably just anemic. She told me to call the doctor on Monday to make an appointment. This was a friday. I had a massive paper due for my english class so I was going to stay in all weekend and finish it. Except every time I opened my laptop I fell asleep. I couldn’t stay up for more than an hour. I felt like the life was just draining out of me. I almost went to the emergency room that saturday night but I dread the hospital and was just trying to wait until Monday so I could see my doctor. I started documenting the bruising on my legs over the last few weeks to see if they were getting bigger, I took pictures every couple days. This is when I noticed the bruising had nearly tripled in size in a matter of days.This is when I started to freak out, it was Saturday November 24th. I was definitely convinced something was really wrong. I went to bed early that night. I woke up sunday morning and got up to go to the bathroom and looked in the mirror and was horrified at what I saw – there was dried blood running all down the sides of mouth. I ran back into my room and looked at my pillow and there was blood all over it. I looked at my gums and they were all red, my gums had been bleeding over night. Naturally I rushed to the webMD app and added this last symptom – and again: Leukemia. Yup, I was convinced. Bleeding gums was the last straw. I freaked out called my best friend crying and she told me to obviously tell my parents and go to the hospital. Of course both my parents were out, my mother was actually out of town. I called her and told her and she said to get my dad to take me to the ER and she would come home immediately. So I got dressed and went to the ER around 2 pm.

Bruises doubling in size in a day

I brought all the pictures on my phone to show the on-call nurse. As soon as it was my turn she was asking what was wrong and I just blurt out “I’m pretty sure I’m dying from Leukemia”, but this time there was no laughter. I showed her the pictures of my bruises and as soon as I saw the look on her face I knew I was right. They took me inside right away to run some blood tests. I was unusually calm at this point. My mom showed up soon after to wait with me. As soon as a team of doctors came in with that “you have cancer” look on their faces I knew. According to my blood work my body was being overrun with Leukemia cells, and I was literally bleeding out from the inside. By this point my ears and nose were bleeding. They couldn’t be positive until they did a bone marrow biopsy to confirm but they were pretty positive I had Leukemia. I was devastated but I was actually relieved to have an answer. I think I just shouted I KNEW IT! I definitely handled the news better than my parents. I think because I had myself so convinced at this point that it was Leukemia the news didn’t really shock me. I had already gone through the panic, scared phase weeks ago when I first downloaded that foresaken webMD app! Right then was when I made the decision I was going to fight it with everything I had in me. I think I took the news as easy as you can when you’re being told you have cancer. I was more concerned with how my parents were handling it. I knew I had to be strong and positive and I knew would beat it. The thought didn’t even cross my mind that I would let cancer take my life, I was going to punch it in the face. I knew I had to be strong for my parents, for my family for my friends. But most of all I knew I had to be strong for myself. There was no way I was going to let cancer destroy me. I would destroy it.

This was November 25th. So began treatment. By this time my blood counts were practically non existent, my platelets were 12 (should be in the hundreds) and my hemoglobin was 58 (should be around 115-120) so that explains the bleeding out and tiredness. They gave me blood and platelet transfusions all night. Now the hardest part to me here was when my oncologist informed me that I would be admitted into the hospital for a month starting now. I couldn’t imagine being in there for a whole month Away from my family, my dog. I get homesick so easy. My next thought was what the hell am I supposed to do about school? There was 2 weeks left in the semester still. And then I realized I had to tell my friends and family I probably have cancer. That was one of the hardest things to do. I told all my closest friends and my mom told my family. I contacted my favorite professor at the university who told me not to worry and would sort out what would happen with school. This was the hardest day of my life so far. Thinking about it now it feels like someone else went through that, not me. It hurts to think about that day but it also makes me feel stronger today because that was the starting point of my battle and I was close to death and I made it through that night. The doctor said if I had waited any longer to come in I would have likely had a brain hemorrhage and bled to death.

After a long night of countless blood transfusions, the next day my oncologist did a bone marrow biopsy. Now let me tell you that is something you never want to experience. It feels like someone is zapping your bone and stabbing you with a giant needle. It was not a good time. They figured I had Acute Myeloid Leukemia at this point but needed to confirm with the marrow. The results came back a couple hours later and they were positive – I had AML. This was a bit harder to take because now I knew for sure. I just knew I had to fight hard and be positive. But there was another thing, the doctor said he thought I might have a rare subtype of AML and that they needed to send some blood work away to be sure but they were going to start me on chemotherapy right away regardless. Hearing that word, chemotherapy. It’s like an arrow to the heart. You know all the connotations surrounding it. My first question was obviously “Am I going to lose my hair?” he told me I would.  I might have cried harder at that than finding out I had cancer, typical girl right? Questions of long term survival, would I need a bone marrow translplant, all were discussed. How was this happening to me at 24? It was after the confirmation of AML I decided to go public with my diagnoses, I didn’t want to keep it private, I didn’t want speculation or gossip about what was wrong with me so I just put it all out there on facebook and twitter after all my family had been informed. This was probably the best decision I could have made because the flood of support I received floored me. I can never thank all of you enough for sending me your words and encouragement on twitter it has helped me more than you will ever know. I knew I had an army behind me that would help me along with my fight. Every word of encouragement sparked something inside me to make me want to fight as hard as I could.

The second day consisted of a lot of test, x-rays, scans. Poked and prodded at all day. They installed a PICC line in my arm since I would be reciving chemotherapy and transfusions for months it’s easier than having an IV put in. I was relieved for that because I hate needles. Well, I used to hate needles. I’m used to them now. The PICC line insertion went well but because my blood wasn’t clotting it started to bleed out. My mom had to hold bandages on my arm for like 8 hours before the bleeding stopped. The bruises were still growing because my blood wasn’t clotting. I finally got transferred out of the main floor onto the oncology floor which was much better. Some of my friends came to visit me and aside from the hospital setting it all seemed pretty normal at first. On Tuesday November 27th I began my first round of IV chemotherapy, Idarubicin. I was also started on steroids. The plan was chemo every other day. It was so surreal, it was bright orange colored and looked like kool-aid.The steroids were awful. I wanted to eat everything in sight. I seriously dreamed about McDonald’s and poutine and donairs and pizza, it was the weirdest thing. I said I would be the only cancer patient to gain weight during chemotherapy, haha.

PICC Line bleeding out

cleaned up

They also started me on a secondary protocol of pills in case the test for the rare form of Leukemia came back positive. At first the chemo didn’t make me sick. I felt really weak and tired from my low blood counts.  I got the results back on my blood test a couple days later and it turned out I did have this very rare subform of AML called Acute Promyelocytic Leukemia or APL. At first when you hear “rare” you think worst case scenario. However I am actually lucky I had this kind. The doctor informed if you get Leukemia, APL is the one you want. (like anyone wants Leukemia right? hah)  It has a 90% cure rate and better long term survival. This was great news. I started doing my own research at this point and it was hopeful. I read a lot of case studies on it. What causes APL is a gene mutation, chromosomes 15 and 17 switch place and start creating these cancerous promyelocytic cancer cells instead of regular red blood cells and platelets and crowd out your cells until you bleed to death. Pretty scary stuff! This causes this bruising which is the main symptom and most people don’t notice for a while which is why people end up dying from it before they can get treatment, they usually  hemorrhage in the brain. APL used to be 100% fatal. The good news is in the 90’s the chinese scientists discovered a sort of cure for APL in a form of vitamin A that corrects the gene mutation and makes the body stop producing these promyelocytic cancer cells. These pills are called All-trans Retinoic Acid or ATRA. The ATRA in combination with IV chemotherapy can induce remission in 90% of patients, and with consolidation and maintenance therapy to avoid relapse.  I could be considered cured after 5 years of being cancer free. This was fantastic news to me, considering regular AML has more of a 40% survival rate. The diagnoses of APL inspired me to fight even more. So the plan was 50 days of ATRA, 7 days of IV chemo therapy. Then hopefully I would be in remission. Consolidation therapy would be 4 more rounds of IV chemo from January-March. Okay, I could do that. The last step was maintenance therapy so I wouldn’t relapse which would consist of ATRA every 84 days,  a chemotherapy pill called 6MP and another one called Methotrexate. For two years. That was a little scary. I’m going to be doing treatments for 2 more years? I knew I had a long road ahead of me but if it meant I could be cured then what is 2 years out of a lifetime? Piece of cake. I want to live.

Cancer gift basket

One funny thing that happened when I was first in the hospital was that my dad won a breast cancer gift basket, 2 days after I was diagnosed with Leukemia. He had always donated this raffle for breast cancer when he went to sobeys and then he ended up winning 2 days after I got cancer. How funny is that? I thought that was a sign of some sort that I had support in ways I couldn’t even imagine.

The month I spent in the hospital was by far the hardest part of my treatment. I’m a big homebody it was really hard being away from my home, my bed. They kept moving me around from room to room, I had a couple roommates at different points. I think I was in 4 different rooms on oncology before they settled me into a single room. Chemo wiped my immune system out so I spent the majority of my hospital stay on isolation so I wouldn’t get sick. Visitors were limited. I was so thankful for my family. My mom took sick leave from work and spent nearly every day with me in the hospital. I don’t know what I would have done without her, she was my rock and made me survive the hospital stay. My dad and sister spent a lot of time with me too. My close friends visited a few times but I wasn’t really supposed to have many visitors so it was risky. I mostly just wanted to sleep. I had a lot of nasty side effects from the chemo eventually, I’ll spare you the details but they weren’t pretty. One of the worst was ‘thrush’ a throat infection from the steroids. I couldn’t eat anything and I was in agony. The weight I gained from the steroids? No problem! I lost 15 pounds in 7 days thanks to thrush. That was a rough time. But I got past it. I was getting blood work done every day, had platelet and blood transfusions constantly. The good news was I seemed to be responding to treatments right away, my blood counts were starting to stay up. I basically just tried to stay positive and kill time. Good thing I’m a movie buff, laying in bed watching movies all day? Not too shabby.

this was a part of my daily wardrobe for months

Basically it became a waiting game for my blood counts to stay up and my immune system to come up before they would release me. I wasn’t expecting to get out in time for Christmas, that was pretty depressing. I really missed my dog Dodger too, that was the first time I’ve ever been away from him. After a couple weeks my doctor actually told me Dodger could come visit since he’s so small. That was the best night of my life when he came to see me, it made me feel less homesick seeing his little face. I read a lot in between treatments, and I slept a lot. The hospital was starting to feel like my home and home felt like a distant memory, it was so strange. I was starting to feel better until I started getting some weird reactions to the nausea meds they were giving me, turns out I was allergic and they were making me sick! Oh the irony. So they gave me a different one. The weirdest thing that happened to me in the hospital was I had a weird reaction to Maxaran, the new anti-nausea IV. It started with extreme anxiety. And then my muscles started twitching, my face and hands started contorting and I couldn’t control them. I got lock-jaw and I couldn’t stop grinding my teeth. I was starting to look like Rocky Denis from mask if he had a stroke. It wasn’t pretty. It’s funny thinking about now but at the time it was scary because the doctors had no idea what was happening to me. This went on for about 6 hours and it got to the point I couldn’t breathe because of the spasms and the doctor freaked out and after an IV of Ativan, muscle relaxers used for Parkinson’s, nothing was working. Finally she stuck me with and IV of Benadryl and it stopped! Yup, it was an allergic reaction and an extremely rare reaction called Dystonia, the doctor had never seen it happen to anyone before. Something rare happening to me? No way! hahaha. I found out because I googled it afterwards, gotta love webMD! My new best friend.  Needless to say I passed out hard that night.

Dodger visiting me in the hospital

The hardest thing that happened was when my hair started to fall out. I went to take a shower one day and I took my ponytail out and a chunk of hair came with it. There are no words to describe what that moment feels like. Holding a chunk of hair in my hand. This was about week 3 in the hospital, I was starting to think my hair wasn’t going to fall out. I was wrong. I definitely cried for a bit. That was the beginning, after that it was falling out non-stop, every time I touched it. On my pillows. I stopped washing my hair because it was too traumatizing looking at a tub full of hair. That was when I understood why cancer patients shave their head. I had a woman come in with wigs and I bought a high quality one to wear once I was out of the hospital. I felt a little better after that. I kept telling myself it’s only hair, it will grow back.  I was responding really well to treatments by now it was just a waiting game waiting for my immune system to come up so I could safely leave the hospital.

During this time in the hospital I had so many gifts and cards being delivered to me. The kindness really blew me away, I honestly wasn’t expecting such an outpouring of support. People I hadn’t talked to in forever were sending me messages getting back in touch. I cried reading all the kind words and cards that were being sent my way. It all just made me want to win my battle. My cousin set up an online fundraiser for me (www.gofundme.com/erinsbattle) and I couldn’t believe all the people donating to me. My friends set up some fundraising campaigns. One was the @erincandy t-shirt campaign where they sold shirts with my twitter handle on it and gave me the proceeds. So many people bought them, I was so touched people wanted to help me. My other friends set up a fundraiser through a bar called Bald for Bode where they planned to shave their heads for sponsorship money. My friends set up a jar at UNB for donations. All proceeds went to me. Thank you to everyone who was involved in this. It meant more to me than you can ever know. I was now jobless, and a student in debt with no income so every penny helped and is still helping.

Meaghan & I in the hospital with the @erincandy t-shirtrs

Every day that it was getting closer to Christmas and I was still in the hospital was a bit sad. I missed my home, I wanted to see our Christmas tree. My parents moved my room from the basement to the spare room upstairs for when I came home so I wouldn’t have to go up and down stairs every day because I was pretty tired and weak all the time. 4 Weeks in the hospital it was getting harder to keep positive and stay strong but I tried my hardest. And then one day my immune system just started to go up. I literally had 0 white blood cells for weeks and then BAM they started multiplying. The day the doctor came in and told me I could go home I was so happy I cried. I was allowed to go home December 24th. I had to go back to the hospital every day for transfusions and treatments but I was now an outpatient! I was home for Christmas! Let me tell you that was the best Christmas of my entire life. I had never been so thankful for my family, for my home, for my bed. I was happy to see snow, to see Christmas lights on the tree.

christmas!

My birthday is December 29th so I was home for my birthday too. They officially discharged me December 28th. It was the first time I wasn’t able to really celebrate my birthday or New Years Eve, my favorite time of year but at least I was getting better. It was my 25th birthday, and I made the decision to shave my head. I couldn’t take it falling out anymore. So for my ‘birthday party’ a few of my closest friends came over, including my friend who is a hairdresser and we shaved my head. It was the most freeing feeling. It honestly felt so much better than touching my hair and seeing a chunk of hair in my hand. And luckily, I didn’t have a cone head. I think I pulled off bald pretty good actually! And I had lots of fun wigs to play with.

redhead for a day

my expensive wig

In January I went for another bone marrow biopsy to see if I was in remission. It didn’t hurt as bad as the first one and I was feeling pretty good. I found out the 17th of January that I WAS in remission! Not only were there no detectable cancer cells but my chromosomes had switched back to their correct positions! I was in triple remission. BEST. NEWS. EVER. If finding out that I had cancer was the worst day of my life, finding out I was in remission was the best day of my life. I believe being positive about my fight helped me achieve remission in 6 weeks. I knew I would beat it.

fun wiggin’ out

The Bald for Bode fundraiser was something I will never forget. My friends all came together and shaved their heads in support of me and raised money for me doing it. My friends made “Heisenbode” shirts (because I love breaking bad). A bunch of my guy friends shaved their heads and one girlfriend shaved her head for me. It was the most amazing thing. I knew with all this support I could make it through the next few months.

Bald for Bode

Anna & I

 

I did a round of chemotherapy every month for the next 4 months. Went through blood transfusions, nausea, all the chemo side effects through this time. I just tried to stay strong and keep fighting. I finished my last ever IV chemo treatment in March, it was a good feeling. I was in isolation for these months but at least I was at home. I couldn’t really do much because I had no immune system and had to be careful not to get sick. I did end up back in the hospital for a week during march break because I had a fever. But I got through it. After each treatment I knew I was closer to being finished. My immune system finally started to stabilize in April and my last blood transfusion was in May. My hair started to grow back in May too! It was a totally different texture and color but it was hair! I was starting to feel like myself. I had my PICC line removed from my arm in May and I just have a small scar from it now. The bruises on my legs were faded but not gone, they scarred. It almost looks like birth marks. A constant reminder of my battle. It took a couple months for my blood counts to stabilize and my immune system to come up before they could start me on my maintenance treatments. I had the whole summer off from my meds and I felt almost normal. I spent a lot of time with my friends trying to be normal. It was time to start feeling like a cancer survivor instead of a cancer patient. I was feeling pretty good though and I asked my doctor if I could go back to school in September. I wasn’t allowed to work but he agreed I could go back to school if I took care of myself.

Hair is growing back

I started my maintenance therapy in August. I take chemotherapy pills every day, and another kind weekly. The ATRA every 3 months. I will do this until 2015. I get blood work every Monday to see how my counts and immune system are doing. Every day is a battle but I don’t want my life to be on pause while I’m battling this, so I went back to school full time in September. I fought for my life and I’m going to live it. I feel sick, and tired and frustrated some days. But I also feel alive. I never realized how much I took for granted until I was faced with death. I see people every day taking their health and friends and family for granted. I am so thankful to be alive. I didn’t plan on spending my mid 20’s battling cancer but I’m determined to win, to keep on living, to graduate from university, to get a job, to fall in love, to grow old. Growing old is a privilege denied to many.Every day is a battle but at least I’m here. I’m back in school, I might be broke and unable to work but at least I’m trying to continue my life. I don’t want it to be on pause until I’m finished treatments in 2015.   My scars are fading, my hair is growing.

December (Cancer) vs August (Remission)

It’s now been 1 year to the day since I first walked into that hospital, the day that changed my life forever. That’s the thing, you never know that today could be the day that your life is changed. I’m a different person, I have a whole new outlook on life. I don’t take the little things for granted anymore. In a way my cancer has made me happier, I’m so happy to just be breathing. I never realized how strong I could be until I had to be. I still have a long road to go until I’m finished with treatments, but every year I make it is another year closer to being cured. When my treatments are finished I’m going to take advantage of life, I’m going to travel, I’m going to live every moment like it’s my last because now I know just exactly how fragile life can be.

I just want to thank some people who helped me through my battle:

Thank you to my  best friends who kept me strong and fought alongside me every step of the way.
Lacey, Nick, Paige, Meaghan, Anna, Kathleen, Jeff

Every friend who has been there for me. My friends from school. My amazing co-workers.

Thank you to my cousins for all you did for me.

Thank you to my Grandmothers, my Aunts and Uncles who helped me make it through. My aunt who still visits me every weekend to this day.

Thank you to Dr. Fury for everything you’ve done for me

Thank you to my sister who showed me how strong us girls can be.

Thank you to my dad for worrying and making me want to be stronger.

Thank you to all the people I’ve never even met but have supported me from afar. (Twitter friends, you keep me strong)

Thank you to my moms friends who have shown me such kindness.

Thank you to my mother, who is my best friend, my strength, my inspiration, my heart. I wouldn’t have survived without you.

I love all you guys.

My name is Erin Bodechon, I’m 25 and I’m a cancer survivor.

UPDATE: October 2021

I am still in remission 8 years later. I finished my degree graduating on time with a double major in history and psychology with an English minor.

I moved out on my own, I helped fund a cat rescue. I rescued some kitties and helped save lots of strays.

I met my person and soulmate who loves every broken and healed piece of me.

We got a house

We have careers we love

October 13, 2021 he asked me to be his forever

And I said yes.

To the rest of forever… I’m so glad I beat cancer. If it comes for me again, I’ll be ready.