posted Thursday, 13 April 2006
Today was my first quarterly follow-up visit with my oncologist... How odd it felt to be back in that office that I frequented so often last fall.
It was like deja vu as I headed back to the lab for my blood work. It appears that my veins are beginning to heal, making this a rather uneventful experience. In addition to standard blood tests, I had an additional test called a CA-125 test (this is a protein that can be made by abnormal ovary cells and is used to help screen for ovarian cancer). Because of my BRCA 1+ status, I am also at high risk for ovarian cancer. Unfortunately, there really is no good way to screen for this (even the CA-125 is often inaccurate)... but I suppose this is the best we can do.
Next I saw the nurse for my blood pressure and weight. I think she was surprised to see that I had put back on all the weight I lost during chemo (and then some!)... I guess I hide it fairly well!
Finally I go in to see Dr Cairoli. He examines me and we discuss the ongoing screening. I had heard from some others that even with a mastectomy, they sometimes offer/recommend radiation (typically, you get radiation after a lumpectomy). Over the past few months, I had been thinking a lot about this... should I ask for radiation? (Am I crazy to want more treatment?) It feels so good to be done, but I do not ever want to look back on this and wonder "if only I had done the radiation..."
What I had heard was that with mastectomy, the recommendation is based on the # of + lymph nodes:
3+ radiation of the node field & chest wall
1-3 optional radiation (not necessarily recommended)
0 no radiation (risks outweigh the benefit)
I fall into the 1-3 range, where it is not really recommended, but sometimes offered. Dr Cairoli clarified the guidelines for me. He said that with 1-3 lymph nodes, radiation is only recommended if the tumor was very large (>5 cm). He really felt that the risks of the radiation would outweigh the benefits that I would receive, therefore he would not recommend it. After discussing it, I was comfortable with this recommendation and could put the issue to rest. I've done everything I can to fight this with the information that is available at this time and I can not/will not question that further.
We wrap up the appointment and schedule my next visit. On my way out, I stop by the treatment room to say hello to the nurses and show off my curls. It's like a big reunion party. It's kind of strange, as I look into the treatment rooms, knowing that that was once me sitting in those chairs... and in all honesty, it could be once again.
I now have to wait a few days for my bloodwork to come back. This is fairly excrutiating. Why is it taking so long? Finally, Dr C calls and lets me know that all of my tests came back normal. It is really a huge relief. I can't believe that I will be going through this every 4 months. The waiting game is frustrating, nerve racking and emotionally exhausting. It is hard to keep from thinking about "what if", but for now, I will try to focus on "what is".
Thursday, April 13, 2006
Thursday, April 6, 2006
SPEAKING OUT
posted Thursday, 6 April 2006
Tonight I attended a training for the Komen Foundation Speaker's Bureau. The Komen Foundation Central & South Jersey Affiliate runs the NJ Race for the Cure and has granted to hospitals and nonprofits to fund education, screening and treatment for the medically underserved.
The Speaker's Bureau volunteers lead discussions on breast health and the Komen Foundation. I am excited to begin giving back by spending time helping the foundation & becoming an advocate for women in NJ.
If you are interested in doing more, become an advocate- you can start small by emailing your Congress-person about pending legislation to fund screening and research for breast cancer. The website makes it super easy!
If you are interested in having somebody from the Komen Foundation (me?) come and speak to your group in Central or South Jersey, please let me know!
Komen Mission - To eradicate breast cancer as a life-threatening disease by advancing research, education, screening and treatment.
Central & South
Jersey Affiliate Vision - To affect a meaningful reduction in the percentage of late stage diagnoses of breast cancer through aggressive education and screening
Tonight I attended a training for the Komen Foundation Speaker's Bureau. The Komen Foundation Central & South Jersey Affiliate runs the NJ Race for the Cure and has granted to hospitals and nonprofits to fund education, screening and treatment for the medically underserved.
The Speaker's Bureau volunteers lead discussions on breast health and the Komen Foundation. I am excited to begin giving back by spending time helping the foundation & becoming an advocate for women in NJ.
If you are interested in doing more, become an advocate- you can start small by emailing your Congress-person about pending legislation to fund screening and research for breast cancer. The website makes it super easy!
If you are interested in having somebody from the Komen Foundation (me?) come and speak to your group in Central or South Jersey, please let me know!
Komen Mission - To eradicate breast cancer as a life-threatening disease by advancing research, education, screening and treatment.
Central & South
Jersey Affiliate Vision - To affect a meaningful reduction in the percentage of late stage diagnoses of breast cancer through aggressive education and screening
Thursday, March 9, 2006
Fill 'er up!
posted Thursday, 9 March 2006
Today was another follow-up appointment with Dr Borah. At my last appointment, two weeks ago, we discussed beginning to fill up the expander on the right side. Since I was heading out to Denver for the conference that weekend, I decided to hold off (plus, I didn't want to risk losing that expander too, by stretching the skin too quickly). Today, we began.
First, Dr Borah took this small plastic contraption that had a small magnet hanging from a string in the middle of it. He slid the doo-dad around on my skin until the magnet was hanging straight down, signifying that it was directly over the metal port in the expander under my skin. He approached it from several directions, marking up the spot with a purple marker. Finally, we were ready to begin. An IV bag was hanging behind me, filled with saline. The tube led down to a split -- one direction went to a syringe and the other direction went to a needle. He filled the syringe with 50 cc's of saline and then stuck the needle through my chest into the port. It felt very strange. Not really painful... just weird. Like pressure. He slowly pushed in the syringe, forcing the saline into the expander that is burried under my pec. Weird! He told me that we would stop as soon as I felt "vague discomfort". I stopped him almost immediately... he called my bluff. We finally agreed to push in the entire 50 cc's and even added 10 cc's more. I probably stopped him too early, but I am travelling to Minneapolis for a wedding this weekend and really don't want to be uncomfortable. Plus, I'm really not in a rush, seeing as how the left side is going to take another surgery... so slow and steady...
Oh! I almost forgot to tell you all about my trip to the Totally You boutique down by the shore... Charlene's cousin owns the store and we went down a week ago to look at prosthetic breasts. Yes - it's true... after all these years, I have finally decided to start stuffing my bra! I didn't mind being small... but I at least want to be even (at least when I am out in public). Since I was unsure about how long I would be uneven for (whether I am going to have the surgery in May or wait until next winter), I didn't want to spend too much on a prosthetic. They range from ~$45 for a foam insert... to $400 for a realistic looking silicone breast. They sell bras, camisoles & swimsuits with pockets in them to hold the prosthetic. In the end, I settled for a weighted foam prosthetic (it's weighted so that it doesn't ride up in your shirt). It was pretty weird to wear at first, but I am getting used to it. If I decide to hold off on surgery, I think I will go back and get a nicer piece... but this will do for now. I've decided that she needs a name though... any suggestions (keep in mind, my grandparents read this blog, so keep it clean, will ya!)?
So anyways, between my A cup prosthetic and my slightly inflated expander, I am almost even... in fact, I would be surprised (and curious as to why they are staring) if anybody could really tell the difference. Now that I am getting used to wearing it, I feel nearly 100% comfortable and natural, which is really a great thing.
First, Dr Borah took this small plastic contraption that had a small magnet hanging from a string in the middle of it. He slid the doo-dad around on my skin until the magnet was hanging straight down, signifying that it was directly over the metal port in the expander under my skin. He approached it from several directions, marking up the spot with a purple marker. Finally, we were ready to begin. An IV bag was hanging behind me, filled with saline. The tube led down to a split -- one direction went to a syringe and the other direction went to a needle. He filled the syringe with 50 cc's of saline and then stuck the needle through my chest into the port. It felt very strange. Not really painful... just weird. Like pressure. He slowly pushed in the syringe, forcing the saline into the expander that is burried under my pec. Weird! He told me that we would stop as soon as I felt "vague discomfort". I stopped him almost immediately... he called my bluff. We finally agreed to push in the entire 50 cc's and even added 10 cc's more. I probably stopped him too early, but I am travelling to Minneapolis for a wedding this weekend and really don't want to be uncomfortable. Plus, I'm really not in a rush, seeing as how the left side is going to take another surgery... so slow and steady...
Oh! I almost forgot to tell you all about my trip to the Totally You boutique down by the shore... Charlene's cousin owns the store and we went down a week ago to look at prosthetic breasts. Yes - it's true... after all these years, I have finally decided to start stuffing my bra! I didn't mind being small... but I at least want to be even (at least when I am out in public). Since I was unsure about how long I would be uneven for (whether I am going to have the surgery in May or wait until next winter), I didn't want to spend too much on a prosthetic. They range from ~$45 for a foam insert... to $400 for a realistic looking silicone breast. They sell bras, camisoles & swimsuits with pockets in them to hold the prosthetic. In the end, I settled for a weighted foam prosthetic (it's weighted so that it doesn't ride up in your shirt). It was pretty weird to wear at first, but I am getting used to it. If I decide to hold off on surgery, I think I will go back and get a nicer piece... but this will do for now. I've decided that she needs a name though... any suggestions (keep in mind, my grandparents read this blog, so keep it clean, will ya!)?
So anyways, between my A cup prosthetic and my slightly inflated expander, I am almost even... in fact, I would be surprised (and curious as to why they are staring) if anybody could really tell the difference. Now that I am getting used to wearing it, I feel nearly 100% comfortable and natural, which is really a great thing.
Comments:
1. susie left...
Thursday, 23 March 2006 8:05 pm
how about Patti, kind of like "paddy"--get it, like a padded bra?
Thursday, March 2, 2006
BACK TO WORK
posted Thursday, 2 March 2006
March 1 was officially my first day back at ZS Associates. Of course, I had a client meeting scheduled and didn't actually make it into the office, but technically, I was "at work". Many people commented that it was crazy to have a meeting on my first day back, but it was actually kind of nice. I didn't have to prepare the meeting materials or give the presentation -- I just sat there and listened. It was a nice welcome back too, as I was returning to work with one of the clients that I had been working with before I left. The folks at the meeting were all people who I had known and worked with and who were actively supporting me in my absense. It was nice to see everyone - I got hugs and "welcome backs" and it really felt great!
March 2, I returned to the office to find a lovely bouquet of flowers and a Whole Foods gift card from Meryl, the office manager, and a Welcome Back sign on my office door from Vanita. Folks stopped in throughout the day, making it fairly unproductive, but still... really great to be back. Thank you to everyone for making me feel so welcome!
I am planning to take back only one of the two clients that I had before I got sick, representing ~50% of the client work that I was doing a year ago. To fill my time, I will be taking on several internal projects, providing me with more flexibility and less stress, as I transition back into life at ZS.
March 1 was officially my first day back at ZS Associates. Of course, I had a client meeting scheduled and didn't actually make it into the office, but technically, I was "at work". Many people commented that it was crazy to have a meeting on my first day back, but it was actually kind of nice. I didn't have to prepare the meeting materials or give the presentation -- I just sat there and listened. It was a nice welcome back too, as I was returning to work with one of the clients that I had been working with before I left. The folks at the meeting were all people who I had known and worked with and who were actively supporting me in my absense. It was nice to see everyone - I got hugs and "welcome backs" and it really felt great!
March 2, I returned to the office to find a lovely bouquet of flowers and a Whole Foods gift card from Meryl, the office manager, and a Welcome Back sign on my office door from Vanita. Folks stopped in throughout the day, making it fairly unproductive, but still... really great to be back. Thank you to everyone for making me feel so welcome!
I am planning to take back only one of the two clients that I had before I got sick, representing ~50% of the client work that I was doing a year ago. To fill my time, I will be taking on several internal projects, providing me with more flexibility and less stress, as I transition back into life at ZS.
Tuesday, February 28, 2006
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.
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.
Tuesday, February 21, 2006
OH YES IT'S LADIES NIGHT...
posted Tuesday, 21 February 2006
Nancy and I had been planning a trip to "someplace warm" for the end of February. It was intended to be a celebration of the end of all my surgeries... Unfortunately, the complications I experienced in early Feb left me a bit skittish and thinking that a trip to a 3rd world country was probably not prudent at this time. So, we planned to wait for the e-savers to come out and take a spur-of-the-moment trip somewhere.
Thursday, the e-savers went out and we checked the weather report.... apparently, this weekend's weather everywhere stinks! In TX, it wsa 80 degrees on Friday and 40 degrees + raining all weekend... CA was similar.... so rather than spend money to fly somewhere with horrible weather, we figured we'd drive somewhere nearby. Of course, we hadn't considered that it was President's Day Weekend, so everything in the NE (VT, etc) was not only expensive... it was sold out.
Enter Bonny. Bonny found herself with a few days off from work and though of Mrs Duncan (mother of her best friend from high school, who owned a condo in Rehoboth Beach, DE). She rented us her beach-front condo and we loaded up the Rav 4 and took off for DE. We arrived on Sunday, did some grocery shopping and tapped into the 3 bottles of wine that we had brought. Around 7:30pm, we strolled down the boardwalk to Grotto's pizza and ordered some dinner. After a quick stop at the candy shop (for fudge), we headed back to the condo for an evening of singing, olympics, and CPR training on the blue lobster (ask Nancy for details!)
Monday was spent hitting the sales at the outlets... serious damage was done... good thing Bonny received excellent news about a new job and was able to spend without feeling badly (Nancy and I had little excuse for our lack of restraint). Monday night we had dinner out at a cute little restaurant.
Tuesday was met with another quick jaunt at the outlets before hitting the road.
Trips like this make me so thankful for my girlfriends. Growing up, I didn't have many (really only Katie & Tracy). I tended to run with the boys... playing sports, catching craw-dads and such... but over the past 10 years, I've realized that even tom-boys can have girlfriends... there are lots of girls out there who aren't "girly"... they are down to earth and totally real... and it's times like this (and the past 6 months) that I realize just how lucky I am to have my girls by my side.
Nancy and I had been planning a trip to "someplace warm" for the end of February. It was intended to be a celebration of the end of all my surgeries... Unfortunately, the complications I experienced in early Feb left me a bit skittish and thinking that a trip to a 3rd world country was probably not prudent at this time. So, we planned to wait for the e-savers to come out and take a spur-of-the-moment trip somewhere.
Thursday, the e-savers went out and we checked the weather report.... apparently, this weekend's weather everywhere stinks! In TX, it wsa 80 degrees on Friday and 40 degrees + raining all weekend... CA was similar.... so rather than spend money to fly somewhere with horrible weather, we figured we'd drive somewhere nearby. Of course, we hadn't considered that it was President's Day Weekend, so everything in the NE (VT, etc) was not only expensive... it was sold out.
Enter Bonny. Bonny found herself with a few days off from work and though of Mrs Duncan (mother of her best friend from high school, who owned a condo in Rehoboth Beach, DE). She rented us her beach-front condo and we loaded up the Rav 4 and took off for DE. We arrived on Sunday, did some grocery shopping and tapped into the 3 bottles of wine that we had brought. Around 7:30pm, we strolled down the boardwalk to Grotto's pizza and ordered some dinner. After a quick stop at the candy shop (for fudge), we headed back to the condo for an evening of singing, olympics, and CPR training on the blue lobster (ask Nancy for details!)
Monday was spent hitting the sales at the outlets... serious damage was done... good thing Bonny received excellent news about a new job and was able to spend without feeling badly (Nancy and I had little excuse for our lack of restraint). Monday night we had dinner out at a cute little restaurant.
Tuesday was met with another quick jaunt at the outlets before hitting the road.
Trips like this make me so thankful for my girlfriends. Growing up, I didn't have many (really only Katie & Tracy). I tended to run with the boys... playing sports, catching craw-dads and such... but over the past 10 years, I've realized that even tom-boys can have girlfriends... there are lots of girls out there who aren't "girly"... they are down to earth and totally real... and it's times like this (and the past 6 months) that I realize just how lucky I am to have my girls by my side.
Friday, February 17, 2006
Ithaca is GORGES
posted Friday, 17 February 2006
Things worked out really well for once, as ZS was doing interviews this week at Cornell. Lucky for me, I have a new "friend" at Cornell who I would be more than happy to spend some time with. So, my first trip to Ithaca was scheduled and I was going to do some work while I was at it.
I drove up on Friday night, after dropping Otis off at his "dad's" house... I'll miss that little boy, but he'll have lots of fun playing with Phinny! I hit a pretty decent snow just north of Binghamton, giving my new SUV it's first test. The dealer told me that people call the Rav4 the "snow killer"... I'm not sure that I really collected enough information to either confirm or deny that claim, but it's funny to think about.
On Saturday, we played poker with Mike's friends (all grad students)... as it whittled down to just a few remaining participants (including moi), a friend of Mike's realized that I was the only one with a real job and I was poised to win all of their money. His prediction was right and I walked away from the event $40 richer... boo ya.
Sunday we went out and hiked a little ways up the gorge at Cornell. It was beautiful - all frozen (for some reason, I am feeling rather un-photogenic these days... and, of course,I forgot to charge my camera, so I only wound up with mediocre photos) and it felt sooo good to be outside and acting like a normal gal. Sure, I was out of shape, but I was doing more than sitting on the couch, so that's a victory in my book.
Tuesday night, I gave a presentation to about 30 students interested in working at ZS. Again, it felt good to feel "normal" again. We interviewed 14 students on Wednesday for the Operations Research Analyst position. What a long day! I couldn't believe how tired I was! As excited as I am to get back to normal life, I think it is going to be quite a shock to actually do it! I think I may still try to go back to work on March 1, but I am definitely going to try to ease into it... after these two days recruiting at Cornell, I know that my body is still a bit worn down.
I went to the Cornell bookstore and had an interesting encounter. This young girl who was working at the bookstore commented on "how healthy my hair was"... I thanked her and she made another comment, so I volunteered the information that I had just finished chemo, so my hair had never been damaged by sun or chemicals. She told me that she could tell - she had been through chemo a few years ago - and she recognized my "victory hair" I beamed. We connected and wished each other well. What a great thought - I am victorious. All this while, I was thinking that the finish line was near.... but in reality, I've crossed the finish line... everything that is left is just the victory lap... and cleaning up after the race.
I drove up on Friday night, after dropping Otis off at his "dad's" house... I'll miss that little boy, but he'll have lots of fun playing with Phinny! I hit a pretty decent snow just north of Binghamton, giving my new SUV it's first test. The dealer told me that people call the Rav4 the "snow killer"... I'm not sure that I really collected enough information to either confirm or deny that claim, but it's funny to think about.
On Saturday, we played poker with Mike's friends (all grad students)... as it whittled down to just a few remaining participants (including moi), a friend of Mike's realized that I was the only one with a real job and I was poised to win all of their money. His prediction was right and I walked away from the event $40 richer... boo ya.
Sunday we went out and hiked a little ways up the gorge at Cornell. It was beautiful - all frozen (for some reason, I am feeling rather un-photogenic these days... and, of course,I forgot to charge my camera, so I only wound up with mediocre photos) and it felt sooo good to be outside and acting like a normal gal. Sure, I was out of shape, but I was doing more than sitting on the couch, so that's a victory in my book.
Tuesday night, I gave a presentation to about 30 students interested in working at ZS. Again, it felt good to feel "normal" again. We interviewed 14 students on Wednesday for the Operations Research Analyst position. What a long day! I couldn't believe how tired I was! As excited as I am to get back to normal life, I think it is going to be quite a shock to actually do it! I think I may still try to go back to work on March 1, but I am definitely going to try to ease into it... after these two days recruiting at Cornell, I know that my body is still a bit worn down.
I went to the Cornell bookstore and had an interesting encounter. This young girl who was working at the bookstore commented on "how healthy my hair was"... I thanked her and she made another comment, so I volunteered the information that I had just finished chemo, so my hair had never been damaged by sun or chemicals. She told me that she could tell - she had been through chemo a few years ago - and she recognized my "victory hair" I beamed. We connected and wished each other well. What a great thought - I am victorious. All this while, I was thinking that the finish line was near.... but in reality, I've crossed the finish line... everything that is left is just the victory lap... and cleaning up after the race.
Comments:
1. susie left...
Friday, 24 February 2006 2:11 pm
Ooh--this blog entry made me feel so happy! i love it linda!!!
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