Life with MS & EDS

October 19, 2009

A Most Unique Breast Cancer 3-Day

For the past 2 years I’ve been involved with the Philadelphia Breast Cancer 3-Day as a Crew Captain.  As some of you know, I lost a friend (Posey‘s best friend) to Breast Cancer in 2007.  She lost her life just before Christmas 2007 at the age of 35 after an 8 month battle against a very aggressive breast cancer. She discovered a lump while nursing her 7-month old daughter. She was a fighter and her strength was amazing and inspiring.

Just after learning about her diagnosis I decided I’d participate in the 3-Day and was a Crew Captain in 2008. I always thought I’d walk the event one day, but that year I wanted to help in a more direct way to help the thousands of people who embark on the 3-Day, 60 mile journey.  Last year I had an amazing time at the 3-Day, but had a very difficult time at night.  I was shivering and freezing and just couldn’t warm up, despite many layers of clothing and a ton of “hand-warmers” shoved into my sleeping bag.  One month later I was diagnosed with Multiple Sclerosis and it all made a whole lot more sense!  Now that I know walking likely isn’t the best option for me, I plan to keep helping in that more direct way. I love serving on the crew and have found my place in the 3-Day.

I was really excited for this year’s event.  I was assigned the same role as last year, so I was confident and knew what I was doing.  I had a larger crew assigned to me than last year which was pretty cool.  I got to meet some of them during the Crew Extravaganza in September and instantly knew I had a fantastic team.

About a week out from event, I started to look at the weather forecast.  I was monitoring it for a different reason than most people.  My concern was whether or not I’d be able to stay at camp.  After my difficulty last year, I received the okay to sleep off-site if needed.  I decided if the weather at night was going to be less than 45 degrees, I was going to commute instead of staying at camp.  The weather forecasts were looking pretty ominous.  A Nor’easter was coming our way.  It was going to be cold, wet, and windy starting Thursday, which is our Crew Day where we train our crew for the event.

Crew Day arrived and as promised by our weather forecasters, the conditions were far less than ideal.  It was wet, cold and windy.  Philly forecasters have been wrong more often than right (so it seems), so it sucks that they got it right this time.  Despite the weather, all but one of my team arrived at Crew Day and were so enthusiastic!  We had a great day and were ready for whatever came our way the next 3 days.  The plan at the time was to give up on trying to sleep at camp and we’d relocate to a local high school.  That solved my problem of sleeping outdoors, so I was thrilled with the arrangement.

Each year I have walkers stay at my house since I’m the closest to the starting point.  My mom stays overnight to be here with the girls in the morning while my husband takes on the role of chauffeur, driving me to the opening site and then the walkers there a couple of hours later.  I was heading home to get dinner together for our friends when I got a call on my cell from someone on my crew team.  She was still at Crew Day as her daughter was part of opening ceremonies and they were  practicing.  Word had just come out that Day 1 of the walk was canceled due to the weather and the fact that there was no way to set up camp.  It was just too wet and windy to even set up the event tents.  Without a dining tent, it’s impossible to have a camp.  Also, the medical team was extremely concerned about everyone’s wellbeing.  So, the plan changed to having Opening Ceremonies at Camp 5 p.m. Friday evening.  They thought things would improve enough by then.  We’d have dinner and Opening at camp, then get bused to the school to sleep, and begin with the walk on Day 2.

I immediately started calling my crew, many of which were in from out of town and staying at hotels.  It occurred to me that I was missing some cell phone numbers, but after a few hours I was able to track everyone down.  Only 2 of my team said they were heading home and the rest were hanging in there.  It turns out that not having the event was even more work for the Captains, Coaches, and Staff than having the event!  Most of my team were really disappointed, but they were hanging in there.  I have such an awesome crew!!

Well, that plan didn’t last for long.  By the next morning things had changed yet again.  My friends and I were headed over to the mall where opening ceremonies would have taken place.  We had a feeling other walkers would be there and we wanted to walk a bit and cheer them on.  Sure enough there were over a hundred people walking there.  It was really cool!  We had a nice lunch together and by then my phone started ringing.  My husband was stuck fielding calls at home and I knew it was time to get back to do another phone chain.

Day 2 had also been canceled.  The plans seemed to be constantly changing.  There were a lot of really angry walkers.  They had worked so hard to get ready for this event and this was not at all what they expected.  Some of my crew were disappointed as well.  Most of them checked out of their hotels.  It was just too expensive to stay.  A couple more people said they weren’t able to come back when the event finally happened, which I completely understood.  They are all going to try again next year though!  There’s some fear that this will turn people off to future events, but so far everyone I’ve talked to is signing up for 2010!

I was reading the message boards and sent an update out to my crew that there were a lot of walkers heading to local malls.  By 7 p.m. Friday night, one of my crew e-mailed to suggest that we go to King of Prussia on Saturday and set up a “pit stop” for the walkers.  By 9 p.m. we had a plan and many of our team were on board.  Some of us were bringing candy, others were going to offer foot massages, some were going to do face painting, others were bringing decorations, tables, chairs, etc.  We decided to set up outside of New Balance since they are one of the national sponsors for the 3-Day.

We showed up at 10 ready to go.  The folks at New Balance were so supportive!  Even more of my team showed up than I expected.  We also had someone from another crew team join us.  We set up an awesome “pit stop” with candy, posters for walkers to write messages, face painting (which was a HUGE hit!), foot massages, a photo area where we took team pictures for people with a “thank you” sign so people could use them in their thank you messages, information about breast cancer, stickers, etc.  It was fantastic!  We even raised a bit of money for the cause!

At 1 p.m. there was a large rally outside a store at the other end of the mall from where we were.  We all headed over there.  Turns out there were 600+ walkers!  The 3-Day staff brought in a truck with lunches for everyone.  My team helped distribute the lunches, get people water, etc.  I was joking that I was wondering just how many crew jobs I could do in one weekend.  I was having a blast!  After lunch we went back to our pit-stop until around 4 when things were quieting down at the mall.  I had to get home anyway as my walkers were coming back to stay the night.

The plan that had come out later on Friday seemed to stick.  The walk was now a Breast Cancer 1-Day!  The walkers would come to camp by 7:15 when the route would open.  Our team had to arrive at the Closing site by 4 a.m.  We’d do some work there and then go over to camp to resume our regularly schedule responsibilities.

We got to camp by 5, I think (I was trying not to pay attention to how early it was since I got up at 2:45 for all of this.)  Soon after that, walkers started to arrive.  It was sad to see camp without the field of pink tents, but as soon as we got there we understood exactly why they had trouble setting things up.  It was a muddy mess!

By 6:45 our team was in place to scan everyone out onto route.  I estimated that there were about 2,000 walkers and I was only off a bit.  There were about 2, 500 walkers out on Sunday!  That’s only about 500 less than we expected if the event went off as originally planned.  I was so impressed with the walkers’ determination.  After camp cleared out we helped clean up and then got on a bus to the holding site.  Usually that’s a nice park, but this year it was smart to have it inside, so we hung out at a high school for several hours.  While we waited for the walkers, we sorted all of the mail that usually gets distributed at camp.  I love doing this kind of stuff, so it was a fun way to pass a couple of hours.  Soon enough our team got called to get back to our normal role as walkers were arriving and it was time to check them back in.  We did that for a while and handed out “relo” legacy pins, too.  Then volunteers came in and took over so that we could enjoy some time with friends before closing.  I got to see Posey and our other friend and her mom.  It was great to spend even a little time with my 3-Day team.  The time for crew to hop on the bus to closing came too soon.

We arrived at the Navy Yard for the closing crew meeting.  By then I had huge blisters on my feet.  The snow boots I wore all day were not really meant for this kind of use, but at least my feet were warm and dry.  My physical state was easy to explain.  My feet hurt and my body was tired.  My right eye’s vision was a bit more off than usual.  It was warm at the holding site and I had on about 5 layers of waterproof clothing.  I really only noticed my eye when I went to take pictures.  For years I’ve used my right eye to look through the camera.  Now when I do that everything is blurry.  It’s hard switching to the left eye.

I’m having trouble formulating the right words for how I felt emotionally.  Last year by this point all of the excitement was carrying me through.  There was a different feeling in the air this time.  There was little cheering where we were doing the scanning because there wasn’t space for it.  Walkers were coming back in a different mood.  Some were excited, but others seemed like they still felt cheated out of the 60-miles.  It was hard to know what to say to them.  By this time last year, I felt like we had bonded with the walkers.  We had helped them during their final steps into camp, we had called medical teams for them, we had given them hugs as they came off of the sag buses disappointed, we were starting to know their names as we reached for their credentials.  I didn’t get those experiences this year.  I guess what I was feeling instead was pride. I was so proud of everyone for making the best of less than ideal circumstances.  I was proud of the grassroots efforts over the weekend to organize walks at malls all over the tri-state area.  I think they got even more press and attention for the cause than in typical years.  I was proud of my crew for hanging in there and for being so creative and determined to help the walkers wherever we could find them.  I’m in awe of the staff who pulled all of this off.  It was truly amazing.

I think everything really hit me during the closing ceremonies.  If you’ve ever been to one of these, you’ll know that walkers come into the ceremony first and fill in a giant circle.  Then crew enter and file-in in front of them.  Then we all take one sneaker off (or boots in the case of many crew this year) and hold it up as the breast cancer survivors walk in to honor them.  The survivors fill-in the inner circle in front of the crew.  That is when my heart warmed.  That is when I remembered why we are all here.  That is when I remembered why we need to continue to fight for a world without breast cancer.  Yes, I have MS, but it’s not going to kill me or rob me of time with my girls and my husband.  Breast cancer kills thousands and thousands of people.  An extremely aggressive form of breast cancer is why my friend wasn’t one of the women in the survivor circle last night.  We cannot stop fighting this disease.  We need to keep fighting so that the next generation of women never have to worry about breast cancer.  We all deserve a world free of breast cancer.

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May 4, 2009

MS Walk 2009

Filed under: Uncategorized — by mseds @ 3:20 pm
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Six months ago I never expected that I would have spent this past weekend doing the MS Walk in Ocean City, NJ.  Six months ago I didn’t even know I had MS.  A lot has changed in the past half year.

The first time I heard of MS is when someone asked me to donate to the MS Walk.  I have cousins who do the walk every year and I’ve always donated to their efforts.  Earlier this year I thought about doing a walk, but at the time my girls didn’t know I had MS.  My girls know I’m a crew captain for the Breast Cancer 3-Day and that’s their only frame of reference for a “walk.”  I do that in memory of a friend who lost her life at the age of 35 after battling breast cancer for only nine months.  I still remember when she came to Big Sister’s birthday part in April 2007 and said she had just found a lump while nursing her baby.  From there it was a rapid slide from Stage 2 to Stage 4 breast cancer.  She passed away just before Christmas 2007.  I wasn’t sure how to tell my girls that Mommy has something people do walks for.  I had a difficult time getting past that since they know I do the 3-Day so that other girls won’t lose their mommies like our friend’s family lost theirs.  Even once we told the girls last month that I have MS, I still wasn’t sure how to tell them about the Walk.  I didn’t want them making any connections between the 3-Day and the MS Walk.  Yes, MS is important enough to walk for, but we’re not doing this because it can kill Mommy, because it won’t.

My last MRI is what motivated me to sign up for the MS Walk.  I felt helpless knowing that there are a ton of lesions on my spine.  That was quite a shock after thinking things were pretty good with only 3 spots on my brain.  Other than staying on my daily drug and doing the steroid treatment, there wasn’t anything I could do about it.  Then it occurred to me that there certainly is something I can do about it.  I can walk.  I can ask friends to walk with me.  I can ask friends and family to support me.  Together we can all do something about it.  We can raise money and awareness to fight this for me and the thousands of others like me.  It was empowering to take on this challenge.

Soon after I registered, four friends and someone I don’t even know (a friend of a friend) joined to walk with me.  I was so elated!  It all came together very quickly and in less than a month our team raised $1,000!  As important as raising the money and doing the 4 mile walk (which was a bit of a challenge for me) was the time I got to spend with these amazing ladies.  We’re very fortunate to have access to an old beach house, so we made an overnight of it.  We had great food and great conversation.  A get-away was just what I needed after Day Ten on Prednisone.  Many of the ladies are walking the 3-Day this year, so it was a nice training walk for them.  We even reminisced a bit about our friend who passed away.  She would have appreciated that we had a few laughs when thinking about her.

While it’s hard to fundraise for two important efforts, I decided that I’m going to give it my all and hopefully continue to make a difference for both.  From Mother’s Day through October, I’ll focus on the 3-Day.  Now from October through May, I’ll focus on the MS Walk.  Next year I hope to be able to do VIP Check-In.  We all deserve a world free of breast cancer and free of MS.  I hope I can do my part.

December 21, 2008

It Could Be Worse!

Filed under: Uncategorized — by mseds @ 9:29 am
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A year ago this weekend, my husband’s group of friends from college and those of us who married in gathered at UPenn’s hospital to say goodbye to a friend who was passing away. Karen lost her life on December 22, 2007 at the age of 35 after a battle against a very aggressive breast cancer. She was diagnosed in April 2007 and things quickly went downhill from there. She discovered a lump while nursing her then 7-month old daughter, who she called her angel, for without nursing her, she may not have caught it as quickly as she did. Karen was a fighter and her strength was amazing and inspiring. She left behind a loving husband and two little girls (ages one and three.) No child should have to lose a parent before they are even old enough to remember them.

My attitude since being diagnosed with MS is that it could be worse. Much worse. While my vision in my right eye is cloudy and I’m more tired than I should be, my little girls don’t see their mother suffering. There’s no reason to expect that my interactions with them will change at all in the immediate future. They don’t have to watch me suffer through anything like chemo or radiation. My time with them will not be cut short. I feel very fortunate that of all the things that could happen to a person, I just have MS. It’s far better than hearing something like “you have a kind of breast cancer that chemo won’t cure.” It puts things in perspective.

This year instead of gathering around a hospital room we had a holiday party at our house. About 40 friends and family came to celebrate the holiday season. It was great to be surrounded by loved ones, some of whom I get to see pretty frequently and others who I’ve not seen in years. We hosted a holiday party our first year back up here in 2006 and last year had to skip it because of Little Sister’s tonsillectomy, but I’m glad we’ve restarted the tradition and see no reason why it can’t continue for years to come. It’s nice to have things to look forward to.

I hope you all have a very merry Christmas and/or a happy Chanukah and a very wonderful and healthy New Year!

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