1 Year

It was one year ago yesterday that I walked through the doors of Dana Farber with my mother and Uncle Jimmy in tow.  I had no idea what to expect and fear was probably spilling out of every cell in my body.  You know those movies where people get stuck in the revolving doors and just keep going round and round to avoid their fate….well I wanted to get that sucker going round fast so it would somehow act as a dolorian and send me back to Chicago.  I still couldn’t believe this was happening  and wasn’t even sure it was.  In addition, my husband was back in Chicago, with Saywer and my Dad packing up our essentials to move to Massachusetts to live my parents.

My mom and I were directed upstairs to meet with the first physician in the Loveolution group to discuss what I didn’t want to know which was statistics and symptoms etc.  I didn’t have one symptom, so I didn’t want or need to hear statistics that are so difficult to truly determine and can be driven by the statistician concluding them.  So before she even spoke I told her what I wanted: no symptoms, no statistics, just options.  At that time there was a pediatric regimen that was working well and from there a bone marrow transplant.  I wanted to take one step at a time, but really it was an easy choice after the research I did in Chicago.

I walked up to floor 4 and saw my new home….YIKES.  The nurses made it sound like the ritz, but the bathroom tiles tilted down towards the right, the window didn’t open, but if you opened the blinds there was a beautiful brick wall. 🙂  So I focused on the inside.  The nurses showed me where I could walk this little circle around the nurses station or on the floor, if  you go around 30 times it was 2 miles. (When Colleen and Wendy were visiting they had difficulty with the small size of my track and being such good sports Colleen took Dramamine so she wouldn’t get sick and Wendy just closed her eyes and went to the bathroom a lot).

I called the chemo an elixir of love.   All the nurses  loved it because why not???  And they all went along with it.  I had vision boards all over my room and had friends send all kinds of spiritual things.  I was in remission in 2 weeks….I AM BLESSED.  Then came the bone marrow transplant which was definitely more difficult than I thought.  However, it was really just part of the process.  Again another blessing, my oldest brother a perfect match.  He produced almost 60 percent more cells then you need and I got them all.  It was a gift and one that I will never forget.

When I got home from the hospital I moved slowly and took much time to just heal.  There were many books, internet blogs, and crazy reality shows that got me through this time, but my family and friends were the most important.  Whether a phone call or short visit it was just enough to be reminded that I wasn’t a part of the walls in my parents house.  When you can’t go out you would laugh at some of the things you start to think and actually do!! LOL  I will share in the future because that is really putting myself out there and I know there are a few of you that will make fun.  LOL

So last night, was one year and there just happened to be a light the night sponsored by the lymphoma and leukemia society.  I didn’t really promote for it due to several reasons.  First, I had never heard of light the night, so wasn’t really sure what it was all about.  Tad had explained it to me, but for some reason I never quite took it in. There may have been a part of me that emotionally wasn’t ready to go to a big event like this.  Sawyer just started school and so I was actually a little busy because I started school too.  Then there was raising money.  Money is such a weird thing and some people actually get offended when you ask bc there are so many people asking even though intention is good.  But after all these excuses I think the biggest reason was that I want to have a big party next year around Feb 9 to celebrate, thank, and start a foundation for those that are going through illness with financial challenges.   I was blessed to have amazing insurance and we still had to spend a good amount of money on co pays etc.  I can’t even imagine trying to heal and having to worry about money.  However, in the end those were all silly things to worry about and I do regret that  I didn’t reach out to my family as I think that many would have come to walk.  Either way we did raise a sweet amount of money  for the LL society and I will have a nice gathering next year.

To really understand what a family goes through when there is illness and financial challenge, I hope I never know.  When I first entered Dana Farber I had to go to the financial registration desk which is where you give your insurance.  At the time I was just switching to Cobra and they were still processing my registration.  Dana Farber was very concerned about this and I had to provide all kinds of stuff just to see the doctor knowing that I was going to be admitted.  It was so stressful even though I knew it would all work out.  Knowing what this felt like is the reason I want to start a foundation to help families get through this time without stress.  It isn’t just about lack of insurance, it’s about how you are treated, and the fear and stress that you may not receive care.  In addition, I have done some research and there seems to be ways to get govt funding, but I really at this time do not know how to start a foundation, but I will work on it.  If there is anyone who has done this or has some great ideas please let me know.    I will definitely be sending out information so that you all will have plenty of time to mark the party on your calendar.  I am excited to announce the plans that I foresee with this foundation.  You don’t have to give money if you don’t want, just love, support, which is exactly  what I felt last night.  SOOOOOOO MUCH LOVE, so on to light the night….what an event.

We parked the car (even my dad walked with his special walking shoes) and only complained once, but I can’t blame him there was a period of about 20 mins where it just down poured.  It was like God opened up the skies and was sending healing to all of us as it felt very refreshing.  The rain is fun as one time we used to play in it, now we run from it.  But I was grateful that my dad had the biggest umbrella’s in the place.  He put Rihanna to shame.

We then got in line to register: there were three different shirts: I walk in memory of a lost one, I walk because someone’s life depends on it, and lastly, I walk because MY life depends on it.   Each shirt was marked with a different balloon color.  White was the survivor, Red was the walkers for a loved one who needs support, and yellow was a loved one  lost.   As I put the survivor shirt on I just burst into tears, I think I scared my parents half to death. But I could not control the emotion that was pouring out of me….well lets be real it was probably a very ugly cry with snots and heaving sounds, but I couldn’t control it.  And then once my family was surrounding and hugging me I felt safe and loved.  I did this with the help of many and all these thousands of people had too.  They brought the survivors on stage and shared a few stories it was really nice.  Then we started our walk through a neighborhood in Cranston, RI (we started in Garden City parking lot).   All of the houses were brightly lit, as we carried our balloons that were lit from the inside designating what we represented in our walking.  It was beautiful and truly lit up the night.  As we walked it was as if there was a path lit for us, some houses were decorated , and some even had people outside cheering us all on during the walk.  We walked, laughed, and shared stories of the past year.  Of course Sawyer was the center of much laughter as usual.  He looked me in the eyes last week and said “mommy I knew you wouldn’t let me down”.  I am not sure what that meant, but I have my ideas.  There have been many funny days and nights, but I must say my mother  “being” a mother was often funny, but the laughter was  very healing.  She would make a Cabbage Patch wear a mask if she thought there was some way I could catch an infection from it.  Anyway, I was grateful and it was one of the best nights of my life…I didn’t feel alone.

As we got towards the end of the walk you could hear the cheers and clapping, the entire finish line was full of amazing people supporting those who walked.  Again tears came to my eyes because one woman was from Tads company and her husband has been going through this for 2 years with many challenges.  He smiled and laughed as he shared with me (bc we had some of the same nurses) his funny stories.  When I asked what floor he was on he said 4, 6, 8,9,10,11,  we just laughed he was amazing and inspiring person.  People are amazing, especially when they get together in numbers to support.  However, it is the time when it is quiet and you are alone that you still need to find that love and inspiration within yourself….that is a blessing.  I have realized that it truly all comes from within, whether you are alone, with family, at a big event it is love without judgment and fearless faith that will help you walk the steps of life as your story is told.

Please join me with your thoughts about a foundation if you have any ideas or places that are best to start.  I look forward to seeing you in Feb. without a mask  🙂




Love and light


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