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Thursday, October 20, 2011

Partial Remission? I'll take it!

So today was the day. The day I simultaneously dreaded with all my might and wanted with all my heart. The day I would find out if the new drug Adcetris (SGN-35's official FDA name) was working in my body. Well it's working!!! Thank goodness!!! I had my scan yesterday and I manged to work myself into a frenzy because I was so worried about what the scan would reveal. Up until the moment I was on the PET scan machine, I prayed and prayed and then prayed some more. I tried to picture my doctor telling me the cancer was gone and giving him a hi-five! But then the dark thoughts would invade my brain and I would imagine my doctor tell me that the cancer was worse. So, as you can tell, I was all up in my head, thinking crazy thoughts!

When I got back to my office after my scan I emailed the two nurses that I work with and begged them to tell me something...anything...about my scan! I was scheduled to return to the doctor's office today to find out the results, but I felt like I was having a panic attack from the anxiety, so I needed to know something asap. I've been through so much--so many scans and so many disappointments--that it was hard for me to focus on being positive. Thankfully, one of the nurses called me back and told me that my scan was "much better"! I let out a sigh of relief, because those were the words I needed to hear.

And I'm so happy that I spoke to my nurse yesterday because today when Ross and I went to the doctor's office, it was packed! So we had to wait 2 1/2 hours before we saw my doctor. I think I would have passed out from stress/paranoia/anexiety if I had no idea what my results were. Once we saw my doctor, he said that my scan looked really good. Some lymph nodes had even returned to normal! He said I was in "robust partial remission". Now no one has ever, ever, ever used the word "remission" in reference to my PET scan reports. And it was amazing to hear. He wants to do 4 more cycles of Adcetris and than another scan to see if (fingers crossed) I will be in complete remission. After that, we will have to make some decisions such as continuing treatment or doing another transplant which will be the "Cure". I wish that this drug alone could be my cure, but my doctor said that it is unlikely that 1 drug alone could cure someone from cancer, you need to either use more drugs or have a transplant. That depresses me, but I can't focus on that now, just have to get to the complete remission finish line first.

So this is great news obviously...something that I wanted so bad, especially since I will be turning 29 in a few weeks and I really didn't want to celebrate another birthday with cancer. Even though some cancer cells are still there, I'm not as depressed as last year when I turned 28 and felt horrible about my situation. This is the best birthday present I could have asked for!!

Friday, October 7, 2011

Walking for a cure




This past Wednesday I went to my first Light The Night Walk, the Leukemia & Lymphoma Society's annual walk to raise money towards blood cancers. The LLS is a great organization that has a lot of events and seminars for patients and survivors and I wanted to go to the walk last year but was too sick to go. I asked Ross to come with me because I was a little nervous about what to expect. I didn't want to get too emotional or break down so I definitely felt wary as we neared South Street Seaport in NYC where the walk was taking place. I was constantly looking all around me, part of me in awe over how many people were there and part of me wondering if I would see someone I knew--either another cancer patient or perhaps a supporter of the cause.

When you check in at the walk you're given a bracelet if you've raised a certain amount of money and a balloon. The balloons are 3 different colors; red (for supporters/care givers), white (patients/survivors) and gold (in memory of a loved one). As we neared the check-in desk I noticed I was surrounded by red balloons and some gold but only a few white. So I quickly got our bracelets and told the check-in person we didn't need balloons. Ross asked why and I told him that I didn't want to stand out with a white balloon. Here was a place where I expected to be with other people in my situation...cancer fighters...yet when I looked around, I felt like I didn't see those cancer fighters, instead I mostly saw healthy people that were supporters and once again I felt different. I know it sounds silly, because everyone at the walk cared about finding a cure, not whether I was holding a white balloon or a red balloon, but symbolically it made me sad because I was different, not normal. I wanted to be on the other side with a red balloon as a supporter, not with a white balloon as a sick person. Ross shook his head and told me yes indeed that I was being silly. He told me to look around and see that all the red balloons that represented all the support out there for my illness. He said that it should make me feel good to see that, so he made me get a white balloon and surprisingly no one stared at me or looked like they felt sorry for me! Just kidding...I know I can be crazy sometimes. And I do have to give LLS credit for not making a difference in balloon color for patients and survivors, because they feel that all patients are survivors, regardless of whether you are going through treatment or not and I respect them for that.

The event itself starts with a remembrance ceremony where the names of loved ones who've passed are read. Even though I didn't know any of the people who's names were read, that part was hard and scary for me, a reminder of what this disease can do. Then a few LLS staff members spoke and the team captain of the team that raised the most money spoke. He said that his team, the "Lymphomanics", started when his wife's brother was diagnosed with Non-Hodgkin's 10 years ago. Two years later he actually was also diagnosed with Non-Hodgkin's--such a weird coincidence. Following his treatment, he was pronounced cancer-free. But three years later he found out that now he had Hodgkin's. I audibly gasped out loud at this statement...I mean, how much can one person take?? But he said he went through treatment for 6 months and is hoping to find out that he is now cancer-free again in the next few weeks. His brother-in-law is now healthy and doing well. And while dealing with all of this, he still managed to raise almost half a million dollars with his team for blood cancer research. How amazing...to be going through all that...for his family to be going through all that...and for him to still focus on raising money for the disease. That brought tears to my eyes. But I got it together and we started the walk.

I haven't done a charity walk in years and as I think back to previous walks I have participated in for breast cancer and Alzheimer's, I remember thinking it was fun. Bonding with people, getting a little exercise and feeling good about yourself for helping others. But I never thought about what it would be like to actually be that person who needed help. It's humbling and frightening all at the same time. I think that many of us who have helped out at soup kitchens, donated clothes to the homeless or ran in a race to raise money for cancer never thought you could end up on the other end of the receiving line, but I'm here to say its possible. So this experience was far different from any other walk I've done, because it was truly a walk for my life. A walk to raise money for cancer research and drugs that will save my life and allow me to go on and help others. I had a few moments where I became overwhelmed with emotion as we walked through downtown New York and over the Brooklyn Bridge. There were LLS staff members cheering us on and music playing inspirational songs like "Lean on Me" that just made you feel it deep down inside. And there were photos up along the walking route of people who had lost their battle and those who had won. It was and always will be hard to see pictures or read stories of those who have lost their battle with cancer because it's impossible to not think "will that happen to me?", but it's also inspiring to see and hear the stories of those who have won.

When we ended the walk, Ross and I took a few pictures at the finish line by a sign that read "One Step Closer To A Cure" and I felt hope again. However, I had another moment of sadness when Ross told me that he got a text that Steve Jobs had passed away. I knew he had pancreatic cancer in 2004 and I wasn't sure if he ever reached remission, but it was so awful to learn of his passing. I hate hearing about people passing away from cancer and yet everyday I feel like I hear about another person who dies from the disease. It's the harsh reality of the disease and damnit, it sucks.

All in all, I am glad that I went. I think it was important for me to go and experience the efforts that are going towards cancer research and I was so thankful to my friends and family that donated money to support this cause. Next year I definitely plan to go again (white balloon in hand) as a survivor with a big group of friends and feel proud to be there.