Today, I cried some tears of joy but mostly, I smiled. I smiled because today I got my last infusion of chemotherapy. I smiled because I was told that after looking at over 1 million of my cells, ALL of them had been cleared of leukemia. I smiled because my nurse Andrea had a “Nuked the Leuk” shirt made for me. I smiled because there were 15 nurses and doctors waiting behind a curtain as I arrived to surprise me and give me hugs. I smiled because I was with Mike, my mom and my dad- the three people who were with me the night I was diagnosed and have been there for me every step of the way since. I smiled because I walked out of the doors of Dana-Farber and knew that it was my last time there as a patient. I smiled because I got given the greatest gift I could ever receive– a restored, renewed and beautiful life.
I smiled because my baby brother put together this video montage using pictures and videos that I’ve taken over the past two years. I had planned to post a bunch of pictures from today but I’ll do that later– right now this video has made me smile on the outside and on the inside.
Today, after 769 days, I crossed the finish line. Today, I was reminded of every single person that helped me get to this point- every friend, every family member, every nurse and doctor, every person who sent me a card or commented on my blog with well wishes- I thought of everyone. Today, I feel more blessed, more grateful, more humbled then I ever have in my life. Today I feel free… and I feel that because it’s true. I am free.
All my love & light,
Often I think that people consider “meditating” as zoning out, as putting your mind to rest. But for me, I use it as a time to let all the things I have to be grateful for pass by in my mind as if watching floating clouds pass by on a day at the beach. Tonight, I kept thinking about how grateful I am for me. I know that probably sounds self-indulgent but that’s where my mind went. Throughout this experience, I’ve always wanted everyone to know just how grateful I was to every person that has helped me get here but in the end, I walked this path alone. I was the only one on the race trail– it was my journey. In many ways, I was alone. This feeling of isolation and loneliness could be construed as negative but I have come to look at it as a positive. I needed to truly be alone in something in my life… I needed to get through something so difficult, so emotionally and physically painful on my own. Yes, I had an absolutely incredible support system to which made my experience brighter, more fulfilled, more full of love, hugs and supported– but at the end of the day, I went through this every single minute of every single day. Others got to go home, take a rest, “get back to their life,” have a drink, go away for a few days to relax, get away from this all (as they all should have). But I could never fully feel 100% physically or emotionally away from the leukemia– it was always with me, always in the back of my mind- during the highs and lows and in betweens. And those feelings will stay with me the rest of my life because this is still my journey. I’m still marching, I’m still learning. I’m still growing. I am so thankful that March 30th is tomorrow and my body will be able to stop receiving such harsh toxins but I believe that the journey I began on February 20, 2014 goes well beyond March 30, 2016. I’ll walk down this road for the rest of my life. As I should…
I’ve grown on this road
I’ve found love on this road
I’ve found myself on this road.
It’s been a long time coming, but the day is almost here.
Tomorrow, tomorrow, I love you tomorrow. You’re only a day away.
All my love & light,
The bone marrow biopsies are a thing of the past. It was a stressful morning as things got pushed back and I didn’t end up being taken in until 12:30. So while we waited, we took pics…obviously.
Then I was taken in and I had to take a pic with my most fabulous doctor who has done all my spinal taps and all my bone marrow biopsies since the beginning. Not only is she the most fashionable lady at the Dana but she also is the absolute sweetest.
Now it was time to get suited up- and tis the bunny season, I just had to…
So then it was time to chill with the silliness and get this thing some and over with!
(Warning:this is a little graphic but Mike took it and I found it fascinating as I’ve obviously never seen it from this angle!)
And just like that, I took my last “big breath”, Susan pulled the marrow and it was over. I instantly started crying but it was tears of such joy, relief and gratitude. I felt so empowered and so strong in that moment. I have hated this procedure every time, I have always gotten so worked up before and after as I wait for the results. But the reality is, it’s out of my control now. I’ll get the results next week and I really feel deep in my heart that the leukemia is out of my body so the moment just hit me so hard, like WOW, I’m really almost done. The finish line isn’t around the corner anymore- it’s right there, I just have a few more steps until I cross that yellow line.
As always, Michael was there by my side. Today, actually holding onto my feet, but right there with me, making sure Halo was being played at the appropriate time and loving me with everything he has. I’ve said it before and I’ll say it again, I really am the luckiest girl in the world.
With that, I’m making myself a bowl of ice cream and continuing to relax on the couch with my two loves for the night. Thank you for the millionth time to everyone who said a little prayer for me, I owe you big time.
Lots of love & light,
This week has been hard. Harder than expected. What I would’ve expected is pure excitement, pure elation that the road is coming to an end. But instead, I’m feeling overwhelmed with a mix of emotions, most of them being sad and scared if I am being totally truthful.
Tonight is no different. Tonight I feel scared and I feel anxious. Tomorrow I will wake up and go to the Dana for my last scheduled bone marrow biopsy. I always become really nervous before these procedures since I find them really painful but more than that, I’m nervous of the results. I won’t find them out until next week, but tomorrow will be my last “check” for leukemia. The “what if’s” are worrying me. Well, it’s not exactly plural- it’s singular- it’s “what if there are still leukemia cells in my bones, in my blood?” I literally don’t know what I would do and I can’t bare to imagine it, but I keep imagining it.
The flip side is that if the results come back negative and there is no such leukemia in my body…….. Well, there are no words for that.
As I walked into my driveway tonight, I smiled to myself as a small flower has finally begun to pop through the dirt and show its colors. I photographed this same flower two years ago when I had returned home from the hospital as it reminded me of new beginnings. Today, it once again reminded me of new beginnings and a renewal of hope that I so desperately needed. There she goes, Mother Nature making her presence known and love felt. Always remember to look for the little signs.
If I could request it one last time, I’ll take all the good vibes, prayers and positive energy tonight that you can spare.
All my love & light,
Today this is my life…
I’m working from home because of the snow. I’m bundled in head-to-toe fleece and felt like I needed to take the opportunity to document the LAST TIME I HAVE TO TAKE STERIODS.
I have been on all levels of steroids since the second day after I got to the hospital in 2014- before we even knew what type of leukemia I had and could begin my treatment regimine. They’ve had me on all sorts of highs & lows. Eating like a football player, being hyper focused on cleaning and organizing, bloating of my face and body, making my body so sore to the touch, they’ve made me manic and then when I come off them I’ve gotten so low and bordered on depression. They’ve kept me up too many times to count, like way way way too many times to count. And they’ve kept Mike up almost every day that I’m on them because I literally cannot stop talking the second we turn off the lights.
I have hated what these damn pills do to my body but even more so what they do to my mind so today I am ELATED to say that I should never have to take Dexamethasone ever again in my life.
HALLE- EFFING- LUJAH
Back to work.
Lots of love & light,
Last week when I got home from work, I had a letter in the mail from a sender I didn’t know. I opened it and this is what appeared ….
“Don’t let anyone dull your sparkle.”
A very simple note, from a complete stranger that made me feel so warm inside and gave me energy I didn’t knew I had that day.
I got my own SmileCard. And you know what?! It worked. I smiled so big and was so touched by someone’s small act of kindness.
So first of all, thank you to whoever sent this— it’s exactly what I needed.
Secondly, this inspires me to keep writing cards- they make a difference. If you want to make a difference in someone’s day, write a Smile Card- write a few, whatever comes to you, and send my way (2Webster St. Somerville, MA 02145). I’ll take them to the hospital- there are ALWAYS patients that need them.
As we start this new week, let’s take from the important of this saying– don’t let anyone or anything dull your sparkle- you have a lot of sparkle so let it shine!
Lots of love & light,
Had to share this story. Dogs are amazing and so are kids!!!
It seems only fitting that my last round of steroids, after literally too many rounds to count, would hit me SO hard. I literally had six emails from myself this morning when I got to work, all which I had sent from about 1130-1am last night as I could not get my mind to shut off. And today, I just couldn’t stop. Couldn’t stop talking. Couldn’t stop thinking. Couldn’t stop step marching on my way home. Just couldn’t stop. I wish leukemia had a visual bunching bag so I could just destroy it right now. I am so amped up it’s incredible. These steroids are so powerful though it’s just crazy to think about — I go from such extremes highs to such lows when I come off of them. They mentally and physically affect me beyond what I can explain. They have pretty much been the bane of my existence for the past 2 years so I am SOOOOO EFFING EXCITED FOR IT TO BE DONE. LIKE AHHHHHHHHHHH!!!! Three days from now I’ll take my last dose of steriods, hopefully, EVER!!!! Anyways, to be able to remind myself of the CRAZY that comes with the high days– I recorderded this video that I thought I’d share. I look crazy but that’s how I feel right now. I hope it makes you laugh. #NEUKTHELUKE BETCHES!
Happy Friday everyone– enjoy all the bliss of your weekends!
Lots of love & light,
Two years ago today, I crossed off the final mark on my “days down” whiteboard. I had started it during my first stint at the hospital after being diagnosed as I wanted to remind myself of the number of days I had been “locked up.” Then with a little Irish luck on my side, my counts crossed over the mark we were waiting for and I was released from the Brigham on St. Patrick’s Day 2014. Mike drove me home with my parents behind us and we celebrated with a pizza and salad from Reginas Pizzeria- my absolute favorite. I remember walking in that door with Mike, having left my house the morning of Februrary 20th just a normal day at work and hadn’t been back since. I was home. I didn’t cry when I walked in, I simply smiled. I felt so much pure joy to be in my house again. As Mike had stayed with me every night in the hospital, he too had not laid on our bed for almost a month. So we did. We jumped in our bed and just laid there together, so thankful that we were home. So grateful that God had granted me a second chance and that I was able to lay there beside him. We cuddled, and took in the moment before my parents came in with pizza. It was a moment I will never, ever forget.
Today, I have 12 days left to go until I cross off my final “day” as a leukemia patient in active treatment. Two weeks from today, I will no longer be an “active” patient. My treatment plan will be over and I’ll be a patient in remission that has to go to the Dana for check-ups every 6 weeks- that’s it. And that’s incredible.
I can’t believe it. I’ve decided I’m never erasing the top part of this board- it means too much. It brings back a lot of memories and it reminds me that as long and hard as the race looks originally, with a little resilience and a lot of faith, you can get thru just about anything.
#neuktheluke final campaign has officially begun.
Lots of love & light,