The weekend of June 15th, my girlfriends threw me a bachelorette party. Before going, my good friend Christine, who we affectionately call "Stini" and I had a few glasses of wine as we were making our weekend plans. She told me she read an article about how all people over 30 should go to the dermatologist and that she had been that day. Not willing to be left behind, I went to the dermatologist the next day. They found a spot on my shoulder they wanted to biopsy. The day of the bachelorette party, as I pulled into my mom's drive and sat in the running car with her staring at me wondering why I was not getting out, I was on the phone with the dermatologist who was telling me the spot on my arm was melanoma skin cancer and I needed to come in Monday to have it cut out. I told my mom and she said, "Oh my God, Stini saved your life!" I went that Monday had it done and rested up the remainder of the week.
By the following Monday, I wasn't feeling so hot and again had another conversation with Stini who was telling me how she had just gotten her annual physical. She had read an article that all responsible adults should have this done....being responsible, I made an appointment for the next day, which was Tuesday.
On Wednesday morning, I woke up to five calls from the doctor at the clinic saying that I needed to go to the emergency room immediately. The doctor said when they did my lab work, all of my blood levels were very, very low. I went to the emergency room and they did all the same tests which were again, at critical levels. I was admitted as soon as possible. Once in the hospital, there were blood transfusions, more tests, and a specialist on Thursday to perform a bone marrow biopsy.
The doctor came in and told me I had leukemia while I was alone in my room. Luckily, one of my closest friends is a pediatric oncologist specializing in Leukemia, who is also a cancer survivor. When she was sick, I was on her care team, since all her family lives up north. She came to my room on Thursday, read my charts, made a few calls for recommendations on the best hematologist to see, and set up a consult with Dr. Baker for the next day.
My new doctor was terrific, sarcastic, with a great dry sense of humor and this "command" when she walked in to the room that said she knew what she was doing. She came in explained everything to us. When I told her about my upcoming wedding, she said that if we wanted to be married we needed to do it before Monday and preferably as fast as possible. On Friday afternoon, after being diagnosed with leukemia, I sent out this email to all of our friends:
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Dear Friends and Family,
Nicky and I are so very grateful and excited to have each of you in our lives and to have the privilege of sharing our lives and our love with you all.
The purpose of this email is twofold. On Tuesday of this week I visited the doctor for a physical and to get a check up after feeling continuously tired and having headaches for a couple of weeks. Over the next couple of days I underwent a battery of tests and as of Thursday evening I was diagnosed with Leukemia. I start treatment tomorrow.
I am sure this news will come as quite a shock to you all as it has for us, but we believe I am in the best medical hands possible, we are ready to fight this disease and our faith and our love makes us certain that recovery and remission will be swift.
Since I will be starting treatment immediately, Nicky and I have decided to be married sooner rather than later. With the help of our family, clergy, Koumbaro and friends, we will celebrate the sacrament of marriage at 2 p.m. on Sunday, June 26, 2011, at the Saint Luke's Hospital Chapel.
Also it is important that everyone understands the following: My immune system is EXTREMELY compromised, so flowers, fruit, children, as well as anyone who is currently ill with ANY type of cold or illness cannot be a part of the ceremony. Also, all attendees will need to make sure they sanitize their hands prior to entering the chapel. Our ceremony will be very informal and because of my compromised immune system, we ask that you raise a glass in our honor from home if you cannot make it. After the ceremony, we will have a few cupcakes and then I will have to retreat back to the honeymoon suite.....otherwise known as my hospital room. We understand that this last minute change of plans may be terribly inconvenient and please do not feel obligated to attend- we understand. We will plan on having a bigger celebration once I am cancer free. I have been in and out of testing and treatments start tomorrow.
With Love and Faith,
Ann-Marie and Nicky
"It was an amazing gift to just show up...and be able to just focus on ...marrying the love of my life."
Then I make Nicky keep his weekend plans which were to have his bachelor party. I told him that it might be the last time he has fun in a long time, so he better go, just please don't get sunburned. He finally decided to go, and got back to town slightly before 2 p.m. on Sunday, as red as an apple!
During the time he was gone, my girlfriends made all the wedding preparations. Luckily, I had a lot done already. My girlfriends ran around town in full pirate and Where's Waldo costumes and picked up all the needed items. Another good friend drove all over the city and bought tons of silk flowers, took them to a florist and had them arranged to match pictures I had sent friends of flowers I wanted for the wedding. It was an amazing gift to just show up and have everything done and be able to just focus on putting one foot in front of the other and marrying the love of my life.
We were married in the chapel on June 26, 2011. We had a small cupcake and toast reception in the Cooley Heart Center Lobby and then I whisked away in my bridal wheels back to the honeymoon suite, (i.e. my hospital room) and Nicky joined all of our friends and family at Byzantio's a Greek bar we are all fond of for the reception. I started chemo at 11 p.m. that night.
Induction phase of Chemo was done in the intensive critical care unit. I was in the hospital for over 30 days, sent home for one week and then back to St. Luke's for round 2. While I was in the hospital this round, I was notified that I had received a match through the donor registry.
"Then I was whisked away in my bridal wheels back to the honeymoon suite (i.e., my hospital room)."
At the time of my release my team of doctors allowed me to try an In Vitro Fertility round. Against all odds, we were able to retrieve one viable egg, which was fertilized, lasted 24 hours on its own and was frozen. I did the transfer on Sunday and was admitted for my transplant the next day.
Signing in for my transplant was a really hard experience, especially since I knew someone from church and my professional life that died the weekend before the check in, from the same disease after he relieved a transplant. That became a revolving theme, I would walk around the halls and make friends with other patients, and share all the candy, games, socks and reading material my friends were bringing and started making friends on the floor, many of whom did not get to go home.
I have found through research that the chemo that they give you before the transplant is equivalent to that of the victims of Hiroshima. During this time I was sick. Sick from being sick, sick from the medicine, sick from the medicine given to cancel out other reactions from the medicine, and sick from the amount of fluid they filled my body with to protect my organs from the toxins that were almost going to kill me in order to save my life. At one point it felt like an elephant standing on my chest and it was all I could do to focus on a spot on the wall and breathe.
"I have worked to find all the positives in [this experience]."
While undergoing treatment, I would walk all the time, constantly, with Fred (which is what I called my IV pole) and length by length I had prayers I would say over and over to help give me comfort and strength and ask for God's mercy and grace.
During my entire process I have chronicled every step on my caring bridge page, and decided from the start that I was going to be as open and honest about the experience as I could be so that everyone would truly know what it means to go through this process and hopefully in some way it would help them. What I found was that it did help people, lots and lots of people but mostly it helped me. When I was done with an update, I would close my computer and feel a sense of relief.
I know in my soul that this experience was exactly what God wanted me to do, and I have worked to find all the positives in it and there were actually a lot, I have also felt called by God, to spend time every day for the rest of my life trying to educate people on the need for donations and how many lives could be saved if we all participated.
