LIVING BEYOND BREAST CANCER

posted Tuesday, 28 February 2006

This past weekend was the Sixth Annual National Conference for Young Women Affected by Breast Cancer, in Denver, CO. It was co-sponsored by the Young Survival Coalition (YSC) and Living Beyond Breast Cancer (LBBC). I had not planned on attending. I did not want to spend a weekend with a bunch of people with cancer. It’s just easier to move forward (or should I say ignore?) here in NJ… Being engulfed in it seemed much too overwhelming.



The YSC has an online message board that I occasionally read. While in Ithaca, I saw a posting from a young woman in PA who had just been diagnosed. For some reason, I felt compelled to email her. She responded and asked if I was going to the conference in Denver. Well gee – this gal had only been diagnosed 2 weeks ago and she was going to the conference… maybe I should go… nah – still seems too scary. After discussing it with several of my close friends, I decided to suck it up and go. Worst case – I’d spend the weekend in Denver.



I booked my flight and found a roommate (or should I say roommates) on the YSC board (if the conference wasn’t scary enough, I roomed with two complete strangers: Marcela, from LA & Andrea, from Philly… fortunately, they turned out to be very nice ladies). I packed my bags and headed out to Denver.



Jen, the woman who initially inspired me to go to the conference turned out to be on the same flight as I did. We met in the airport and immediately hit it off. I know it sounds cheesy, but sharing something like a diagnosis of breast cancer has a way of bonding people. A sort of “sisterhood”, if you will… though one where your heart breaks each time you have to welcome someone new into it. With Jen, I think we probably would have been friends regardless – she’s a fantastic gal, full of energy, friendly & funny. This was nice because we could talk about things other than just *cancer*. Her boyfriend was attending the conference with her. He’s pretty alright too. As much as I had wished that I had a partner when I began this journey, I can’t imagine how hard it must be to be in that person’s shoes. I suppose it is the same for any dear friend or family member… to hear the news… and feel not only fear, but also to feel helpless from the inability to control or change the situation… to battle the uncertainty and despair of not knowing what to say or do to make things better (to be honest though… even just the “I’m thinking of you’s”, the hugs, the “I love you’s”, and the “I don’t know what to say, but I want you to know that I am hear for you’s” really do make a difference – as do the visits, the cards, the emails). Jen, Mark and I were immediately connected and I was thankful that I was not heading off to Denver alone.



We arrived in Denver and caught the shuttle to downtown. The ride from the airport to the hotel was relatively unimpressive, but as I gazed out the window, across the plain to the mountains in the distance, I thought: “I could live here…” (sorry Mom!) The conference was held at the Adam’s Mark Hotel, which is right on the pedestrian mall in downtown Denver. Walking out of the lobby put you smack dab in the middle of the action – restaurants, stores, etc… were all within a short walk (or ride on the free “Mall Shuttle”). We grabbed lunch and then headed back to the hotel to register for the conference.

At registration, they were handing out Hawaiian leis (the cheap plastic ones), which we were supposed to wear all weekend. The colors of the leis had meaning:


• White = diagnosed within the past year
• Blue/Purple/Pink = diagnosed 2-3 years ago/4-7 years ago/etc (not sure of the actual colors/time frames here)
• Orange = metastatic (the cancer has spread beyond the breast)
• Yellow = caregiver
• Blue = health care professional



There were 700+ participants at the conference, the majority of which are breast cancer survivors. The first thing you saw when you met a new person was their lei. I could not help but cringe any time I saw an orange one. My first thoughts were of sympathy and concern for that person (metastatic cancer is not yet considered “curable”, however you can live for many years with chemo keeping the cancer in check)… but they also drifted to anxiety… what color lei would I be wearing a year from now? 5 years from now? When confronted with these thoughts, I tried to focus on the fact that these women were here this weekend – they were still living and fighting and hopefully, treatment will continue to improve.



The conference ran from Friday afternoon to Sunday afternoon. There were 3 breakout sessions (which I will describe later), as well as several plenary sessions. There were also many “networking breaks” built into the session. The first networking session broke us out by geographic region – the girls I met from the northeast became my pals for the remainder of the conference (Jen, Suellen from NJ, Heather from MD, Pam from Boston). Some of these breaks were spent wandering the Exhibit Hall (full of tables from non-profits, clothing, jewelry, pharma companies, etc)… while some were spent “networking” at the hotel bar upstairs or enjoying the sunshine and some caffeine at Starbucks, across the street… I’m not sure why I feared meeting other women who have gone through this same battle… It was nice to feel connected and know that I am not the only one who has dealt with this at such a young age. Plus, the girls were great! I like to think that I will stay friends with several of them as this experience falls further and further into the past (of course, I don’t doubt that this experience has changed me at the core and will never truly be in the past).







The Breakout Sessions:


• Food for Thought: Practical Advice on Diet and Fitness - The nutrition part of this session was interesting, though it didn’t shed any light on my most burning nutrition question (soy is a phytoestrogen or natural estrogen and the jury is still out on whether it is ok for folks with estrogen receptor + cancers, where the tumor fed on estrogen). The fitness section of this session was pretty pointless, which didn’t really surprise me. Unfortunately, the session was so packed that we had to sit on the floor. We weren’t off to an incredible start.
• Outer Strength, Inner Peace: Using Stress Management Techniques to Enhance Your Life - I debated which session to attend for the second breakout – fertility, genetic testing or this one. Since I had been to several talks about the former, I chose stress. I chose poorly. I did get a chuckle at this session though. We had gone through the “symptoms of stress checklist” and were walking through many of them, with a show of hands to people who felt they had each symptom. “Headache” – the whole room raised their hands… “Indigestion” – again, nearly everyone had their hand up… “Back tension” – the same… “Irritability”, “Bossiness” – many were still raising their hands. We then moved into behaviors… “excessive use of alcohol” – again, I raised my hand… I was the only one. WHAT!?! Earlier, we had brainstormed on ways to relieve stress (take a walk, massage, garden, etc) and “drink alcohol” came up… but nobody raised their hand for “alcohol use is a symptom of my stress”. I then looked down at the pin that I was wearing on my nametag, which I had purchased in the Exhibit Hall – it was a pink martini, where the stem of the glass was a pink ribbon (I’m not a big fan of the “in your face” pink ribbon campaign, but this was cute and not so obvious…). So here I looked like this big boozer (which we know is not the case)… it was pretty amusing. Next, we did a “relaxation exercise”, which was frustrating – it was too difficult to concentrate/relax in a room with 70 other people… and the session was feeling a bit too hokey for me. I bailed and headed to the bar… (just kidding – I headed to the session on Fertility)
• Preserving Fertility After Breast Cancer: Options and Strategies - This was a smaller session, but clearly, a topic very important to those attending. Unfortunately, the speaker didn’t gauge the audience well. She spent the first half hour talking about ways of preserving fertility before beginning treatment. The room, however, was full of women who had already gone through treatment. That ship had already sailed. The frustrating thing is that there really isn’t much that she could have told us – nobody seems to know why some women’s ovaries shut down from the chemo, how long it takes for one’s period to resume (it varies wildly), or what can be done to kick start ovarian function. While I know that I can still be a mom, regardless (there are many children out there needing love), but I can’t help but to cheer on my ovaries daily (come on girls!) and anxiously await the return of my old “friend”…
• Finding Your Way: Dating After Breast Cancer- I remember attending a YSC dinner in early December, where I met ~30 young women who had survived breast cancer. As we went around the room and introduced ourselves, I realized that I was the only single gal in the room. It then hit me. Dating was hard enough before all of this. How am I ever going to meet someone now? How do you tell a new guy this history without him bailing for fear of “emotional baggage”… or worse… When do you tell him? It’s too hard. The irony of this all, as many of you probably know, is that shortly before Christmas, the unthinkable happened. I met somebody. I guess “met” is an inaccurate term, since I’ve known Mike for nearly 10 years… but I suddenly realized that this friend of mine was a pretty terrific guy… and that the pursuit of a deeper relationship would bring personal growth and joy to my life. The best part of it was: he already knew that I had been sick. I find myself amazed at his strength – I didn’t have a choice about whether I wanted to get cancer, but he has a choice. He chose to join me in this fight… and every day, I am thankful that he has.
• Shaping the Future: Understanding Your Breast Reconstruction Options – If you’ve been following my blog, you probably know that this session alone provided the majority of my motivation to attend the conference. Because the expander + implant route didn’t/won’t work on my left side, I am faced with a tough decision about using tissue/skin/muscle from another part of my body (typically stomach or back), in order to complete reconstruction. This is something that, frankly, terrifies me. I have given up enough this past year, I really don’t want to wind up with diminished muscle functioning for a surgery that is essentially cosmetic. There are some new techniques where they take just the fat and skin (no muscle) from your stomach or butt and move it to your chest. The difference is that since they are sparing the muscle, they must sever the blood vessels and sew them into the blood vessels in your chest. This is a much longer surgery and there is a risk of the skin flap failing (thus putting you back to square one). This session was informative, but initially frustrating – the MD announced at the beginning that we should feel free to ask questions as we went through… however, suddenly, we found ourselves more than halfway through the time slot, on page 2 of his presentation and listening to him respond to women who were asking very specific questions that pertained only to their own experience (and which, he couldn’t give a great answer to without understanding their complete history). Finally, someone commented that they’d like to hear his presentation and we got back on track. Bottom line: the “free flap” procedures, while sparing muscle, leave extremely large/visible scarring on the donor site. He has had very few complications with the lat flap (where they take muscle from your back) and it sounds like this is not as scary an option as I initially believed. I’m still not sure whether I want to do the surgery this spring or wait until next winter, but I am leaning towards the lat flap procedure…

Outside of the planned sessions, I managed to have a great time too! On Saturday night, Jen, Mark and I skipped the PJ Party at the hotel and hit a piano bar called Sing Sing, which was a blast! We got there too late to get a seat, which worked out fine, since everyone was on their feet dancing all night long… if you are ever in Denver (or Pittsburgh, where they also have one), I totally recommend it!









On Sunday, Kara (a Rutgers alum who lived in NJ until relocating to CO a few years ago) came and picked me up after the conference ended. I got to see her house, downtown Boulder and some great views from Flagstaff Mtn. I am really glad that I got out of downtown Denver to see more of the area – it was gorgeous! Plus, it was great to hang out with Kara & Stu – people who you can go for years without seeing and then spend a day with, like you are old neighbors.











On Monday, I hung out with Suellen and her friends who live in Denver. We did some shopping, including the Title 9 store, REI, Patagonia (troubles!) and had lunch… Suellen was heading back on a 5pm flight and mine wasn’t until nearly midnight, so they dropped me off at the park in front of the capitol building, where I hung out on a bench, reading and talking on the phone. While I was lying there, an SUV with tinted windows rolled up and gave me a “verbal warning” for sleeping in the park (apparently, you are only allowed to sleep in the other side of the park, which I had walked through and found to be quite scary…). So, I wasn’t sleeping, but I was lying down and I did have several shopping bags with me… kind of funny. The guy left with a stern warning “just make sure you don’t fall asleep here!” Once night fell, I found it difficult to kill time, but I did go get a manicure, check out the souvenir shops and eat a Cajun dinner before catching the shuttle back to the airport. I am definitely glad that I stayed the extra day to check out the scene.