The combination of leukemia and pancreatitis CAN SUCK BRICK KID! (reference to Home Alone 2, anyone?) I feel like I’m one year behind and a thousand years to go to end this hell. I was starting to feel normal again; back at work, going out with friends, having drinks. But as of this Wednesday (and again tonight), I got the lecture of a lifetime about not drinking for the next year. NOT DRINKING? But I just started to be able to have drinks again! I JUST had my first dirty martini. I JUST had my first bloody in a year. I JUST had a great weekend out with friends, laughing, drinking and dancing. I want more than anything to feel like a normal 26 year old, like my normal, happy, carefree self. It’s my favorite holiday of the year this weekend, St. Patricks Day. Isn’t it illegal to not have Guinesses? If it isn’t, it should be. I know I’ve complained about not being able to drink a decent amount in the past but this is just something I haven’t been able to get used to. It’s such a big part of social life, whether we all like it or not. My grandparents drink, my parents drink, my boyfriend drinks, my friends drink, my co-workers drink. I declined an after work event yesterday because I didn’t want to have to go and be the only one to have water, or god forbid have to explain why I can’t drink. It’s literally all around me, all the time.
A year ago today, I woke up like it was any other day. Got dressed for work and headed to Framingham. That would be the last time I go to work for 11 months. Later that day, while sitting in a team meeting, I would begin to get shooting pains down my back and legs so bad that I could barely stay in my seat. I hurried back to my desk to try to walk it out but nothing worked. Within a few minutes, I found myself in a maternity room downstairs rolling around in pain on the floor and calling my mom hysterically crying. At that point, I would call my friend Amanda and ask her to drive me to the hospital. It was an abnormally beautiful February day (nothing like today) and we were able to put the windows down. I remember laughing and making jokes through the pain and putting my face towards the sun and really feeling it on my face, feeling the wind go through my hair. Although I had no clue what was about to happen, I remember the car ride so vividly and feeling a sense of surrealness while making our way to the hospital. We waited there for quite sometime and then my dad came through the door. We finally got taken into a room where I was told, for the what seemed like 100th time, that I just had back pain, most likely sciatica nerve pain. I was then brought into a room where I was able to start listing off the additional ailments that had been going on; nose bleeds, bruises, blood blisters, headaches. Quickly that got the attention of the doctor and they immediately wanted to take bloodwork. At that point, Mike had showed up. A few minutes later, my mom showed up and we both instantly started crying when she gave me a hug. It was like we knew, something was about to go wrong. Maybe our lives were about to be turned upside down. And then it was. A doctor walked in the room and precisely asked my family members to leave. I knew that wasn’t a good sign. She then sat down next to me and took my hand as she said the words that the blood work had come back and it appeared that I had leukemia. I was stunned. I didn’t cry, I didn’t hyperventilate. I was still…numb. I couldn’t believe what I was hearing, I couldn’t believe the words she had just said. And what I couldn’t do is tell my family. So that’s when I asked her to please call my family back in and be the ones to tell them. I’ll never forget the look on Mike’s face when she said the words that I had leukemia. It was the worst thing I had ever seen, and I think the worst thing I’ll ever see. It was a face of sadness, panic, pure worry. It was like looking in a mirror of what I was feeling. Then it all became a whirlwind. We had to pick a hospital to go to and my mom and I got in the back of an ambulance and I was rushed over to the Brigham. At that point, I had no idea that I wouldn’t feel fresh air for almost a month. I also had no idea that I was about to meet some of the most genuine, caring and wonderful individuals I would ever have the pleasure of knowing. One waiting for me in the emergency room. My very own angel, Dr. Mandy. She stood there as I got wheeled in and immediately took my hand and looked into my eyes. She could tell how scared I was, how overwhelmed myself and my whole family was. And she reassured us that everything would be okay. She held my hand the whole time she talked and told me that she was going to cure me, she was going to make me better. And although I had only known her for a few short minutes, I believed everything she said. I instantly trusted her with my life. I would then get taken up to a holding area for the night, that had a lovely metal toilet right next to my bed. That would be the first night that Mike would stay with me, he didn’t leave my side for the next 27 days. He would barely sleep that night. With plenty of drugs, I would sleep on and off the rest of the night and wake up the next morning to get hours and hours of tests done to see exactly what strand of leukemia I had. It’d be a painful, long day but a day that would end up telling me that, Dr. Mandy was right– everything was going to be okay.
I started writing this blog post last week and never finished. I went back and read it this morning and realized in one short week how things have already changed. Here’s what I wrote…
Well it’s funny what a few days, family, friends and good food can do. I had the best four days I’ve had in a really long time. Thanksgiving was wonderful as I got to see my whole family and grandparents and snuggle with my love bug of a niece. Then Friday I got to see a bunch of my best friends from high school at a fabulous Friendsgiving party! Saturday, Mike and I got our Christmas tree and started decorating for Christmas (my ballerina reindeer are up which makes this girl VERY happy). Then we headed out to a housewarming/birthday party at one of our good friends house which was a blast. Sunday we just stayed around the house and decorated for Christmas, made some turkey chili and watched the Pats. It was a busy but perfect few days and it was just what I needed to help get me out of that funk. I felt so happy to see my friends and family and get to spend four days with Mike. Times like this weekend I’m reminded why I’m so blessed. It helped change my mindset and brought me a sense of happiness that I haven’t felt these past four months. There are still hard days ahead (most likely a lot of them) and I will have to keep working on feeling normal and feeling happy but I’m thankful for last weekend as it brought both those things back into my life.
I did something stupid today. I clicked and clicked and clicked through old pictures on Facebook. One by one I went further and further back in time. It was like sinking into a hole. A hole of memories of fun times, times with my family and friends and even coworkers that I want back so bad. Looking back at these pictures make me smile because I’ve had such an amazing life but they bring me down as well because I miss that life so much. Mike and I used to always say we have such a “glorious life.” After fun weekends and things we’d do together, we’d always look at each other and say “ughh glorious life, glorious life!” Today when I was scrolling through the pictures, I realized we haven’t said that in a long time. And that, that made me sad.
I do some of my best writing at 4:30 in the morning…on steriods. And that’s what’s going on right now. It’s exactly 4:37am and my mind is racing and I can’t sleep. So instead of laying here in bed with my eyes open, I thought I’d write down how I’m feeling and what’s new.
It’s been a little while since I’ve written a post, the frequency of the posts have slowed down in the past month and I know it. It’s not because I’m getting bored with my blog or anything of that sort but rather because I’m bored with my life right now. The past 3 weeks have consisted of not eating or making bland, “soft” meals, throwing up, napping, being curled up in pain, going to the doctors, watching tv, sleeping. Repeat. I’ve felt anything but inspirational. I’ve felt bad for myself quite honestly and that’s really it. I felt bad for myself that Mike and I had to cancel a trip to Newport this weekend that we had looked forward to nearly all summer due to my condition. I felt down for myself that I’ve felt so sad lately, it doesn’t feel like me. But as I sit here in bed in the wee morning of hours, I am thinking about everything good that has still happened over the past three weeks.
– I got to see two of my best friends, one from high school and one from college, that live in California and Florida and I very rarely get to see. It’s always rejuvenating to visit with friends, especially those you haven’t seen in quite some time.
– I got to spend time with my family and Mikes family. Both by the pool. Both with our little nuggets. And I’ve said if before but I’ll say it again, there’s no better cure than hanging out with children you love. They put a smile on your face no matter how crummy you may feel.
– I got to slow dance with Mike to Frank Sinatra.
– I got to dance crazily to “Shake It Out” by my girl T Swift with Mike (yes, there’s a lot of dancing in this house). Works for a good belly laugh every time.
– I have been reminded how strong I really am. I have learned how much my body can be put through and how I will bounce back and come out on top, even if it takes a while.
– I got to start back up on the chemo cocktail yesterday. Now this may not be traditional “fun” but being paused is a stressful feeling as you know it’s just pushing back the end goal. So I was thrilled to continue back on the march.
– I’ve learned that the guy sleeping quietly next to me (thank god, it’s a snore a lot of the time!) is the best thing that ever happened to me. That even at my lowest and grumpiest, he loves me unconditionally.
So for a crappy few weeks, there’s still a lot of good that has come out of it. And that’s important to remember, even at my lowest lows. Sometimes, I just have to write it out. I hope you all are having a wonderful and blessed week!
Foggy. You can’t see clearly. You can’t think clearly. You can’t feel clearly. Just like with fog on an ocean dock, fog inhibits you from seeing what lies ahead of you. And that’s how I feel. My whole being feels foggy. Unable to see the brightness of days that inevitably lie ahead. Bogged down by sadness and frustration; physical pain and exhaustion.
Last week was hard. Really hard. This week is better but still hard. It all seems like SO much. So overwhelming. So many medications, chemotherapy and brain radiation sure has a way of making you feel out of it, making you feel not you. And that’s exactly how I’ve felt, not myself. In a way, I feel disconnected to my own life. Like I am in somebody else’s crappy body. Somebody else’s negative mind. I’m a happy person. To my core, I’m happy. I love life. I love smiling. I love laughing. I genuinely enjoy being positive. I get excited over little things. And I love that. So when I feel unhappy, when I feel like it’s an effort to smile or to laugh or to get excited, it doesn’t feel like me. And that hurts. That’s a pain that no spinal tap can replicate.
As Mike and I were watching Father of the Bride 2 and Nina was just about to have the baby, she looked up at George Banks and said “Isn’t this just so amazing?” I instantly got emotional. Not because I was so moved by the film but because I felt so jealous of Nina. (she’s a character, I know.) But I felt so jealous that she was lying in a hospital bed, just like I had been all week, and that she got an incredible baby at the end of it. I want a baby, I thought. Because a baby is a miracle, a blessing. A baby truly is amazing. Now, don’t go all “omg she wants a baby?!?!?!” on me because clearly I don’t want a baby right this second but watching this character receive so much joy brought me a sense of sadness because that “amazing” feeling seems so far away. Sounds so dumpy, I know, but it’s how I felt.
But then I sit here, writing that paragraph out and I know in my heart it’s not true. It’s exactly how I felt. 100% truth. Whole-heartedly how I looked at that moment. But as I reread what I write, I know that although it’s sometimes so hard to remember that there’s an end to this race, that there’s a light to the end of this tunnel, I have faith that there will be brighter, happier, fog-free days ahead. In fact, those special, amazing moments, although they may not be as obvious or glamorous as some of life’s big moments, they’re still here. Despite it all, amazing things are still happening to me.
Like when a complete stranger came up to me at the Michael Buble concert on Friday and told me to be strong and that my hair would grow back more beautiful than ever. That she had “been there, done that” and that everything was going to be okay. That’s amazing. She doesn’t know me, she doesn’t know my story or my diagnosis but somehow this woman knew that I needed that little push last week. I needed to be reminded that this too shall pass. I needed a little miracle. And in that moment, my mind felt anything but foggy. It felt clear and precise and happy because I was meant to be there, finding comfort from a complete stranger. That was meant to happen to me. Now that, that’s amazing.
p.s. Speaking of amazing, here are some pics from our family vacation on the Cape last week!