I recently learned that LLS is raising money specifically for Acute Myeloid Leukemia research through June 30. This is amazing as I am fighting AML myself (just in case I got a new reader on the blog but I’m sure everyone is well aware!) AML is an aggressive blood cancer and until more recently, it was a death sentence. I’m not sure if it’s denial, but I seem to forget that AML has a 25% overall survival rate. Fuckin A. Now this statistic is for AML as a whole and does not consider mutations, cytogenetics and the age/health of the patient. Regardless, it’s scary to read in black and white. When you go to the LLS website, there are a lot of survivor and caretaker stories. Click here to learn more. Naturally, I spent hours reading all of the stories and watching the videos. Sometimes I feel I need to emerse myself in the information because, again, it just doesn’t feel real. So I cry my eyes out realizing I have a story, too. Since I haven’t written about my initial diagnosis, I felt it was fitting since I am currently in the hospital receiving my last round of chemo! It’s been a long 8 months is an understatement but I am hoping this post will be cathartic for myself but also helpful to anyone who is dealing with a life changing diagnosis. Bear in mind, you do not have to be the patient to have a diagnosis change your life. Leukemia has changed my life and many of those around me. So here goes nothin’…
I’ve always been clumsy and an easy bruiser. So in early fall of 2014 when I started getting a lot of bruises on my legs, I figured I was the only one to blame. I had been playing kickball for a couple of seasons and in October, there was a dark black and blue bruise on my right ankle, where I would inadvertently kick the ball. I thought it was strange since I had been playing for months and never bruised from it before.
My annual gynecology appointment was early October and for whatever reason, I decided to talk to my doctor about the bruising figuring I had an iron or vitamin K deficiency. Ha! Boy was I wrong… Normally I would never had said anything but I did, thankfully!! My doctor decided to play it safe and order a CBC (complete blood count) and if anything was abnormal she would refer me out. This was on a Tuesday and the next day I boarded a plane to California for my brother’s wedding. So crazy how timing works out… We had an amazing weeklong trip in California and the weekend following our return was our good friends Blake and Kayla’s wedding and Will was a groomsman. Had I gotten my bloodwork done right away, we would’ve missed 2 of the best weddings I’ve ever attended and those memories that I hold onto in my darkest days.
I went and had my bloodwork done the following Wednesday, October 29, and the very next day I got a call at work from my doctor. She had left a message and I even said to Jenine, in the cubicle next to me, ‘fuck, my doctor just called about my bloodwork, that can’t be good.’ I stepped out into the hallway at 2pm with a pen and yellow legal pad (minute details that I will never, ever forget) and called her back. Within seconds of her asking if I could talk, she went onto say that my bloodwork was extremely abnormal and the pathologist called her directly to make sure I made an immediate appointment with an oncologist as it looks like leukemia. I can still hear the shakiness in her voice as she delivered this news to me. She gave me names of two oncologists and faxed me over the referral and said to call them ASAP. I go back into the cubicle area of the office and completely lose it. I storm past two coworkers and go straight into the bathroom and start hyperventilating. I try to pull it together as best I can as I make my way to the CEOs office. All I have written on the legal pad is the word leukemia underlined 3 times (and it was spelled wrong) along with the 2 oncologists’ names. My CEO calms me down and says there’s no way I have leukemia. I don’t look sick, I’ve been asymptomatic other than the bruising and I’m very active. Hell, I played kickball the night before. He told me to leave for the day and see the doctor in the morning but don’t get too upset until I knew more since it was probably an error. I called the doctor I was referred to and the receptionist took down my information. When I gave her my date of birth she said, ‘oh my, you’re so young’, a phrase I would hear time and again throughout my treatment. She said they were booked but would call me back once she spoke with the doctor. She promptly retuned my call and said to come in at 8am, the doctor was opening the office before patient hours just to see me. Another sign that it was not good. I made a few phone calls to Will, my parents and a couple girlfriends. Everyone reassured me there was no way it was leukemia. We were all convinced this was a mistake.. It couldn’t happen to me. I did some research online but realized there were many types of leukemia so I stopped since the information was overwhelming. I cried and ate sushi with Kaitlyn. So happy I did because soon I would find out raw fish would be a no-no.
Friday, October 31, I went to my first oncology appointment with my mom and Will. I even brought my Where’s Waldo costume to change into for work since I was convinced it wasn’t going to be serious. I had to get another blood draw and was shaking in the chair because I was so nervous. Without even looking any of us in the eye, the doctor sat down while saying ‘so you have leukemia we just don’t know what type…’. **world feels like it’s crashing down, can’t breathe, can’t think, someone wake me up from this nightmare** I really don’t remember what she said after because I just cried while my mom comforted me and I saw the ‘deer in headlights’ look poor Will had on his face. The doctor did say that she expects I’ll need chemo regardless. Bone marrow biopsy was scheduled for Monday. I had to bring a work folder to one of the satellite offices after the appointment since I would not be working for a few days (or so I thought…) and gave it to my office bestie, Betsy, and told her the news. The first of many difficult discussions but she assured me I’d be the bitch living until my 90s. Betsy and I have a great rapport and I never appreciated her candor more than in that moment. We laughed, hugged, cried and went about our days.
Right then and there, my life changed completely. Thinking back on that day brings so much emotion; words can never truly explain it. I’m crying just writing about it because that girl had not a clue what she was about to endure. That laid back, fun girl now faced a grim and very serious reality. But the unknown is absolutely the worst. Having to wait days and days to know what exactly is your diagnosis brings more anxiety than you can ever imagine. I cried more that first weekend than I have throughout my treatment. I made a few calls/texts to some of my closest girlfriends and no one could believe it. I didn’t tell many people initially because I could barely say the words. My brother was about to jump on the first flight home but we told him to wait until we knew more. Will had to make a quick stop by work then took the rest of the day off. We decided to get out of the house and met up with my future slumber party partner Jessi and one of the funniest couples we know, Tommy and Ashley, for lunch then drinks at Grouper. We had the best day you could given the circumstances.
Ashley is an oncology nurse so was able to answer some of the prelim questions I had and gave me words of encouragement. I can’t remember what we did Saturday but Sunday I met up with my lifelong friends, Erin and Kristen, and we went downtown to do a painting class.
It was the perfect day to try to get my mind off of everything but I literally walked around just screaming ‘leukemia, leukemia, leukemia’ over and over in my head. Making eye contact with strangers, looking longingly into their eyes to see if they have similar pain. Erin and Kristen’s mom, Eliana, has been a second mom to me so when we got back to the house, we cried it out and she reminded me how tough I am and will get through this. I cried the whole way home, wondering, hoping, praying, that I would find the strength to get through this. But at that time, I felt anything but strong.
Monday morning I had my first bone marrow biopsy but had to get a unit of platelets (which makes the blood clot) before we could proceed because they were low. It’s silly that I was researching that weekend what negatively impacts platelets and onions, among other things, were on the list… It’s laughable now that I was concerned my diet was the cause of low platelets when in fact it was because the cancer cells were taking over my body.
*IMPORTANT NOTE: Unless there’s an insurance issue or a medical reason, request to be sedated for the biopsy! No need to be tough… There’s no prize for doing it the hard, very painful, way.
The next day I went to the cancer center for the first time to get 2 units of blood. Another remider of the bastards in my bloodstream just causing havoc on my body. I thought if the platelets only took 30 min, I’ll get the 2 units of blood at 9 and follow up with the oncologist at 11. The manager at the cancer center laughed out loud… These take 2-3 hrs per unit, you’ll be here all day so that appointment has to be rescheduled. What the hell?! This was the appointment that determines what exactly I’m facing. THANK GOD we had been working on getting in with another doctor who was praised for being the best; a Harvard trained doctor who works with the top physicians at Dana-Farber to make sure each patient has the best doctors in the country assisting in formulating their individualized treatment plan. Kaitlyn’s aunt was high up in LLS for many years and was able to use her contacts to get us in. When we called ourselves, first available was November 24 but once Kait’s aunt got involved I was seen on Wednesday, November 5. It’s all about who ya know!
This appointment was the biggie. Mom, Dad and Will all came to the appointment and I’m pretty sure we didn’t say a word to each other probably because I had the biggest lump in my throat, and I’m sure they did too. Ironically, Will and I knew the doctor’s medical assistant, Alex, from growing up in the farms and going to school together. It was nice to see a familiar face but he wasn’t too happy to see us there since anyone in an oncology office probably isn’t there for fun. We got into the room after I had my blood drawn and the PA came in for the initial examination. She asked me about my symptoms and I said none other than the bruising (oh and a heavy period for 2 months) .. She was in utter and total shock. And now I know why.. My white blood cell count was 80 with 49% blasts which represents the amount of the earliest, most immature cells were present and a good indicator for how quickly the cancer is spreading. (Reference: normal WBC is 4.5-12, normal blasts in a healthy person should be less than 5%). Realistically I should have been very ill but the human body is resilient and was able to make me feel pretty damn good! I was told I maybe could’ve made it another month or two but no doubt would have ended up in the ER extremely sick. Shortly after, I met my new doctor who had the results from the biopsy. He sat down and asked some personal questions. Then the dreaded words, ‘you have acute myeloid leukemia’. He dove straight in to explaining what it is, how it effects the body, what treatment to expect. He was empathic, looked us all in eye, stopped after each statement to make sure we didn’t need clarification. He stepped out a few times to take calls from his mentor and head of the luekemia department at Dana-Farber in Boston to make sure everyone agreed to my initial treatment. He came back and said I’d be admitted to the hospital the very next day to start treatment. I’m sorry, what?! Induction chemotherapy for AML is a month long stay. The give you a chemo cocktail called ‘7+3’ — they give you a continuous stream of Cytarabine for 7 days straight and the first 3 days you get an additional chemo called Idarubicin. Naturally I say, ‘so I’ll be in the hospital for a week?’ thinking that sounded long .. He sympathetically giggled, ‘no, the chemo is 7 days and then we keep you for a month to prevent complications.’ Jaw dropped to the floor. Next logical question, ‘will I lose my hair?’. Doc said absolutely. Now that the most important questions are out of the way… A lot transpired in that appointment but I don’t really remember. I think Will did most of the talking. So, after a 2 hour appointment we left the office knowing we had a long month ahead but no freaking clue what it all means. Walking to the car hand and hand with Will, ‘will you love me when I’m bald?’. In true form he made some sarcastic remark and then ‘I’ll love you no matter what.’ And I knew then everything would be okay.
Woah, that went deep. Katy and I were talking about the perception of people on social media and how everyone wants to be seen at their best which can make others feel bad about their own situation. I’ve always been an extremely positive person and portray that in the blog but I want others to also know how difficult it has been for me and know the moments when I didn’t know if I had it in me to fight. Whether your a fighter, survivor, or loved one, I hope this helps you know that everyone is scared, everyone has a weakness but if you look at my mindset from initial diagnosis to my first blog post after being released from ICU you see the strength I didn’t have before. I’ve come so far and have had so many blessings, and setbacks, along the way but I am so proud of the person I have become through this process.
I’ll do flashback blog posts on my month in the hospital for induction, my trip to Dana-Farber, visits to various specialists, etc. but need to spread them out because this was enough for one post! But I’ll have some fun, unrelated to cancer, posts in between.
If you made it to the end I commend you.. That was a doozy.