I wandered through a sea of women-nearly 700 of them, in fact. I didn't focus on their smiling faces, their cute post-chemo hair do's, or their spirited pink wardrobes. I was focused on one thing and one thing only...who is wearing purple beads? Where are the young survivors with purple beads? I started to feel panic rising in my chest. Am I the only one wearing purple? When they look at me are they just feeling sorry for me because of the color of my beads? I need to find other young women with the purple beads!
Upon registering at the start of the Conference for Young Women Affected by Breast Cancer (C4YW), each attendee was instructed to don a strand of beads to signify certain categories. Pink beads for those that were 10+ year survivors, blue for healthcare professionals, green for diagnosed 1-5 years ago, and so on. Mike wore gold beads indicating he was attending the conference as a caregiver. I wore two necklaces all weekend - white beads indicating I was diagnosed less than one year ago, and the purple beads that no one wants to wear - the ones for "advanced stage" or metastatic disease.
As I walked through the exhibition hall doors at the start of the conference, I felt like I was wearing a scarlet "A" across my chest. Although I know it wasn't true, it felt like everyone was staring at those purple beads. It felt like I was the only one in the room wearing them. After wandering aimlessly for a little bit with Mike, and chatting with a few wonderful women from my local Young Survival Coalition support group that also attended the conference, I spotted the Metastatic Breast Cancer Network table and made a b-line over to them. I met three lovely women at that table, each wearing their own set of purple beads - finally! Someone that knows the heavy burden that comes with this simple strand of purple jewels. I introduced myself and had a nice chat with the ladies for about 30 minutes. As I was talking to these women, who were all metastatic but were likely in their 50's, I saw another woman come up to the table. She started sharing her story with one of the ladies, while I continued to talk to the other two. I wrapped up my conversation and instead of walking away with Mike, I decided to step back and stalk (er, I mean wait for) the young woman that had come up to the table after me. She looked to be my age and I desperately wanted to connect with her - with someone that appeared to be like me.
When she stepped away from the table, I tapped her on the shoulder, admitted I was lurking in the shadows waiting for her, and introduced myself. We ended up talking for over an hour as Mike also chatted with her mom. Although it saddens me so much to hear of a young mother, diagnosed in her very early 30's, with metastatic disease right off the bat - it also made me feel relieved that for the first time at the conference, I felt like there was someone that really understood what life was like for me. My new friend, Genevieve is optimistic, motivated and ready to do anything she can to kick this cancer's butt. We completely hit it off and had so much in common, and lots to talk about. We both believe that eating right, staying active, and having a positive outlook is just as important when fighting this disease as the medications and treatments prescribed by our medical teams. Mike and I hung out with Genevieve and her mom for much of the weekend - sitting together in breakout sessions (we even picked all of the same sessions to attend), and going out to dinner together on Saturday night. I am so grateful that we met and I know we will continue to cheer each other on and support each other from afar while our journeys continue.
Saturday morning after breakfast and the opening remarks, we listened to a panel of women share their stories. I was so thankful that a few of them were dealing with metastatic disease as well. As soon as each of them spoke, I felt a sense of relief. They were speaking words from my heart - the fears, the struggles, the way we feel when early stage survivors look at us like their worst nightmare. I was so grateful that the conference didn't just highlight early stage survivors - they included women that continue to battle their disease - even though those stories don't always bring the cheers and and applause that the stories do when women can say, "I have been cancer free for 5 years!" Not only were some of the women dealing with mets, but one of them was a 10 year survivor. It gave me such hope! And you know I sought that woman out on Saturday night and introduced myself to her too! :) We chatted for awhile, exchanged contact info, and gave each other a big hug. Although her road hasn't been easy, she's been traveling it for a long time and I plan on doing the same!
In addition to meeting many amazing women at the conference, from every stage of diagnosis, there were great vendors sharing their innovative ideas. The very first booth Mike and I stopped at was for Hope Scarves. We talked with Lara, the creator of Hope Scarves and hit it off immediately. We loved her idea of passing along scarves to newly diagnosed women. Hope Scarves is "a non-profit organization designed to share scarves and stories of hope with women who are experiencing hair loss to due to cancer, injury or illness". We chatted with Lara a few times throughout the weekend and we believe the work she is doing is not only meaningful and unique, but it comes from a place of so much love. If you have scarves you are willing to donate, or would like to send a scarf to someone as a gift, please visit her website for more details.
The rest of the conference was a great experience. Mike attended a session just for men, while I went to one on meditation. The other breakout sessions we attended included; A Medical Update for Metastatic Breast Cancer, Integrative Medicine, and Living with Mets: What Young Women Need to Know. In addition to that, all attendees gathered together to hear from respected physicians as they discussed topics from sexuality to nutrition. I truly enjoyed the conference, and left feeling empowered, hopeful and optimistic!
Mike and I also had a lot of time to explore New Orleans on our own outside of the conference. We spent all day Thursday, most of Friday, and Sunday roaming the streets of NOLA and checking out everything from Bourbon Street, the Garden District, the National World War II Museum and live jazz! We had so much fun!
Mike is a huge history buff, (as well as teacher) so when we found out that the National World War II Museum is in New Orleans, we knew that we would have to check it out. We were thoroughly impressed and highly recommend it for anyone visiting New Orleans.
We also enjoyed great meals - although being vegetarians was a little tricky in a city that is known for it's abundance of seafood and carnivorous cajun cooking. I treated myself to a rare glass of wine, and of course no trip to New Orleans would be complete without a trip to the historical Cafe Du Monde for a beignet.
We wandered the streets and admired the French architecture, the talented street performers, and the craziness that is Bourbon Street.
One of the huge highlights of our trip was attending a jazz performance at the historic Preservation Hall. Originally built in 1750 as a private residence, Preservation Hall eventually evolved into a "sanctuary to protect and honor New Orleans Jazz which had lost much of its popularity to modern jazz and rock n roll." Since 1961, many of the most famous jazz musicians have played in this venue and continue to do so today. It was the most incredible experience and a great way to end our time in New Orleans! I was able to snap a couple pics inside before they announced that photography isn't allowed. I was so bummed that I couldn't capture the band in action.
I am so glad that we decided to take this trip. I am grateful that I was able to meet so many amazing women, listen to knowledgable speakers, and feel even more uplifted and supported. I am just as grateful that Mike and I were able to spend some real quality time together - not thinking about cancer. When we weren't within the walls of the conference, we weren't thinking about cancer, or talking about cancer, or worried about cancer. We were the old Meghan & Mike that love to explore new places, go out to dinner, and laugh together - without a care in the world. It was perfect.
Thanks again for all of your love and celebration as we received such great news last week. We are still smiling over here! Tomorrow I am heading to Playa del Carmen, Mexico for an early 30th bday gift from Mom and Doug. I will be meeting them in Mexico and will also be joined by two great friends - and I couldn't be more excited! Well, actually I would be even happier if Mike could come with me but he has to work and hold baseball tryouts. I am so relieved that I will be able to truly enjoy every moment of this vacation now that I received such great scan results. I am looking forward to relaxing and simply enjoying the sunshine, ocean views, and great company. See you next week!
Let the "scanxiety" begin....ugh, it's that dreaded time of year when I get all my scans redone. I try very hard to remain calm, optimistic and hopeful - but let me tell you, it's pretty tough. I have come to realize that this scanxiety is something that will never go away. It doesn't matter how many times I have a good scan - the worry, doubt and fear all come creeping back in when it's time to be scanned again. Although I like to focus on how wonderful it will feel to get news that I am still in remission, that I can stay on my current treatment regimen, and that everything I have been through is paying off - I can't help but be terrified of the alternative. That the cancer is active again, that it's spread, that my medicines are no longer effective, that it's infiltrated my liver or brain.
My wonderful friend Meredith has taught me to try to think of the worst possible scenario and how I would handle that, and what would our plan be. That way, it takes away some of the fear of the unknown and you can try to help prepare yourself in some way should that be the news you receive. I have been spending some time thinking about this lately and trying to think about how my life could once again change in an instant when Dr. F delivers my scan results. Would I have to start chemo again? Would I need more radiation? Do I need to start new medications? What would the side effects of those be? Do I need to look into clinical trials? Last night as Mike and I laid in bed, I asked him that very question -"What would we do if the results show it has spread?" His response is just another example of why I am so blessed to have him love me. Without hesitation, he simply stated, "We would do anything we had to do to get you better."
Over the course of these past 11 months, I have been slowly adjusting to living a life with cancer. I have come to understand that I will deal with this disease and its effects in one way or another for the rest of my life. Fine - no problem - I can do that. I just want to remain stable. I pray that the disease is still stable, and that I can continue living my life as I am right now. Aside from a few minor things, I have very little side effects with my current treatment plan. I feel good about 90% of the time. I am enjoying being back at the gym and back to yoga classes. I look forward to returning to my job after my next surgery. I am able to travel and spend time with family and friends without worrying too much about how my body will hold up. So, I can't help but worry about these upcoming results changing all of this for me.
I used to say, "okay, I have cancer but hopefully I won't lose my hair", and then it went to "okay, I have to lose my hair but maybe I won't have to lose my breasts." Then it once again changed to, "well, I have to lose my breasts but please just let me still be able to have children." Sadly that statement was forced to transform once again into, "well, I can't have children but please just let me be stable and lead a long life with Mike." And of course "stability" is what I truly want - if I can't be cured (although I do still believe in miracles!), then I pray for stability - for a long, long time. But it all truly boils down to one thing - I can (and have) given up so, so much - and I would gladly do it again in a heartbeat if I knew it would allow me to lead a long and happy life with the people I love. But you see, no one can make such promises. None of us know what our future holds and how much time we have. The difference is that I never used to worry about dying before - I took it for granted that not everyone is afforded a long and healthy life like I assumed I would have. So, I have to make the conscious decision to try to release the worry and fear and give it up to God because I am not the one in control. All I can do is continue to live each day to the fullest and be grateful for each day.
With that said, I would sincerely appreciate as many prayers, healing thoughts, and uplifting words as you can possibly share right now. These times are very tough- not only myself, but for Mike, Mom, Doug and Jeff as we all anxiously await the results. Please pray that this disease is still in remission, that my spine is healing, that my organs are free and clear of disease, and that our anxiety and worry doesn't consume us while we wait for the results. My tests are scheduled for this Tuesday and Wednesday and we won't receive the results until the following Thursday, which is March 1st. You have no idea how much your prayers, thoughts, and comments help lift us up and keep our spirits high during these times!
Thankfully, Mike and I will have a great distraction from my scan results. We leave for New Orleans on Thursday morning! We are actually going to attend a breast cancer conference but we will have plenty of extra time to just enjoy the city on our own. We are such great travel partners and always have the best time when we are exploring somewhere new with each other. Exactly one year ago was the last trip we took by ourselves when we visited Seattle just a few weeks before I was diagnosed. Check out some images from our trip here. We had the best time and I am sure New Orleans will be no different!
Friday evening through Sunday morning we will be attending the Annual Conference for Young Women Affected by Breast Cancer. Young women under the age of forty come from all over the world to attend this conference. There are excellent guests speakers, many of which are leading researchers in the field of breast cancer. There are numerous break out sessions dealing with everything from integrative medicine, an update on the latest metastatic research, and even sessions solely for male caregivers. We are both looking forward to learning a lot and I also hope to meet other young women with metastatic disease such as myself.
Of course, we will find plenty of time for some beignets at Cafe du Monde, grabbing a great cajun meal, and checking out the sites of the French Quarter. We are really looking forward to it. Thanks in advance for all of your thoughts and prayers for my upcoming tests - I will be sure to update the blog next week once I get the results!
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