Several months ago I hit some turbulence in my journey. Things had been going so well and then all of a sudden my numbers crashed, they were lower than ever and my monthly monitoring turned to biweekly lab work. In short I was devastated, on the brink of another painful bone marrow biopsy to find out what was going on and feeling somewhat defeated. Thankfully things turned around but at the time I needed a change of pace, something that would allow me to get my spirit and determination back. While I am truly blessed by the amazing support system that I have both locally and beyond, inside I was struggling and I had a sense of negativity that I needed to shake.  That’s when I heard about Mary’s Place by the Sea.

Mary’s Place is a retreat for women who have had or are currently battling some form of cancer. It’s a place to heal mind, body, and soul. It’s located on the beautiful shores in quaint town of Ocean Grove, NJ and it is all made possible by numerous volunteers, workers, and donors (all angels if you ask me). You can choose to go for a day, a night, or two nights. I learned about this opportunity through my online myeloma community and decided to reach out right away. Really I was thinking, can I go tomorrow? That was October and the soonest they could get me in was January. I thought about waiting until the spring when the weather would be more agreeable but I ultimately decided on a weekend in mid-January right after my birthday and right before the anniversary of my mother’s passing. I thought it fitting.

Have you ever arrived at your destination and were instantly overcome with the notion that this is exactly what you needed? That it was exactly where you needed to be? That was Mary’s Place for me and that feeling grew stronger throughout the weekend. I had checked the weather in Ithaca before I left and had assumed that the cold and snowy forecast wouldn’t be much different in NJ. When I reached Ocean Grove that Friday morning, I parked my salt covered car behind a row of salt-free vehicles out front of the beautiful house I’d be staying in and emerged bundled up in my down coat to find that it was sunny and 50 degrees. Oops! I’d barely put one foot out of the car door before I was greeted by one of the workers who offered a warm welcome and insisted on helping with my bags. I hadn’t even made it inside the house and knew I was going to be among amazing people that weekend.

During your stay at Mary’s Place, they very generously allow you to pick a few services to make your stay that much more enjoyable. Upon arrival I received an itinerary along with a beautiful scarf donated by Land’s End. On Friday I had a wonderful oncology massage as well as participating in some guided imagery. Saturday morning began with yoga and in the afternoon I met with a psychiatrist who specializes in hypnosis. I had never been hypnotized before but hey, I was willing to try anything that could help my dwindling positive attitude. Each and everyone of these experiences helped my perspective immensely. My only wish is that more people in the medical world would start giving recognition to the importance of fighting illness all 360 degrees, from every angle: mind, body, and soul. Attitude truly is everything. What really changed my attitude was the people I was fortunate enough to surround myself with that weekend.

So many wonderful people volunteer at Mary’s place, some every week, some a few times a month. The truth about discovering others who have had cancer or have someone close to them that does is that you don’t want to find anyone else out there with this awful disease to face. But in actuality when you do, suddenly this weight it lifted and maybe what you personally are going through doesn’t seem so bad in comparison. I chatted with many volunteers, all of whom breathe life into this place. Perhaps the most touching story for me was meeting a volunteer, whose daughter is about ten years older than me, had fought not only breast cancer but now has the exact same cancer as me, Multiple Myeloma. Because my mother’s own death from breast cancer, I’ve always been worried that I too would be faced with the same cancer one day. It came as a complete shock to me that my own cancer came in the form of something else entirely, but the concept of having to fight both types in one lifetime was incomprehensible. The blessing in disguise was discovering this woman and I are in the same stage, monitoring and otherwise pretty healthy and from that conversation came a recommendation of a Myeloma specialist (I fired mine, a story for another day) in Mount Sinai that doesn’t always think chemo is the answer. Getting an appointment with this doctor is on my to do list.

As for my housemates, the first night there was only one other guest. She and I are at very different stages as she is actively in treatment and found herself needing to rest quite often. I can certainly say she came to the perfect place to rest in such a peaceful atmosphere with the sounds of the sea right outside your window. That first night I was a little lonely, my fiance, J, was an hour away in Princeton, but a two hour round-trip drive seemed to negate my goal of a relaxing weekend. So I opted for a walk along the shore (catch a glimpse in the video below), and there in the waves, with the smell of the sea air, I realized I needed to do this, just me. If I was really going to benefit fully from this experience I would have to be open to the whole experience, to share things I tend to keep to myself about how I’m feeling mentally. I tossed some of my bitterness and resentment into the sea at that moment and returned to the house where I spend the rest of the evening chatting with the very lovable house manager.

Saturday brought new faces in the form of both volunteers and guests. One of the guests was only with us for the day. Our time together was brief but was lovely that she was able to be there. The other guest (I’ll call her D) was there for the night and no sooner had we started chatting I knew we were going to have a wonderful time. After we had our sessions in the day , D and I took a long walk on the boardwalk and spent time down by the sea. Someone suggested we try out Cavé for dinner, an organic, paleo restaurant nearby. I keep a strict anti-cancer diet which makes eating out hard, a decision that made me deeply appreciate the breakfasts and lunches we were offered at Mary’s place, which align with my own diet. My great discovery was that like me, the paleo diet uses no processed sugar (which is in pretty much everything) and it’s gluten-free. As both D and I try to avoid sugar we promptly asked for the desert menu, that I’ve come accustom to declining at most restaurants, before we had even ordered entrees! The food was nothing short of amazing! I ordered a butternut squash and roasted red pepper soup with a coconut milk base, BLT lettuce tacos (pictured below) and to finish we shared a chocolate chip cookie and a chocolate pumpkin muffin, of which I’m still craving the latter. The remainder of the evening was spent swapping stories until the wee hours of the morning, we had so much to relate to in our journeys and I found a wealth of comfort in that.

Sunday was a bit of a sad day, it was time to pack up and head home after breakfast. Couldn’t I stay just a little bit longer? But the greatest part: being told I could come back again! Oh you haven’t seen the last of me Mary’s Place, because to sum up my experience, well, it was simply life changing! Thank you for giving women a place heal, find themselves, and most importantly give them the positive energy that is so essential when battling cancer. You rock!

You can learn more about Mary’s Place and their brand new 10 bedroom house that opens in February here: https://www.marysplacebythesea.org/

Or following them on FB: https://www.facebook.com/marysplacebythesea

MM

My next post was supposed to be a recap of the wonderful experience I had at Mary’s Place by the Sea, an all women cancer retreat in New Jersey. But in the wake of so many lives lost to cancer last week and today marking the third anniversary of my mother’s passing I felt compelled to shift gears and come back to the retreat next time.

Last Monday was my 32nd birthday. Three years ago on that day we thought my mom might leave this world. I remember thinking please God, don’t let it be on my birthday, knowing if it did my future birthdays would forever be shared with that sad moment. During this time my mom ate very little and found it hard to put together complete sentences. In the days leading up to that birthday I remember telling my family I didn’t want to celebrate or have a cake. I was bitter and angry with the awful way my mom had to leave this world and couldn’t bring myself to celebrate. But my sister got me a cake, and to our amazement  my mom sang all the words to “Happy Birthday” and ate not one but TWO pieces of ice cream cake!  I’ll forever hold that memory of my last birthday I got to spend with my mom.

Flash forward to last week and my 32nd birthday. The night before my birthday, I learned a young father who had bravely fought multiple myeloma had lost his three year battle. While I didn’t personally know him, I had followed his story through my online Myeloma under 50 support group and always hoped to see things turn around. My heart sank to hear of his passing. I awoke on my birthday to hear that David Bowie had lost his battle with cancer, at the age of 69, the same age as my mom. I found myself right to where I was three years ago, bitter and angry with how many people are taken from us by cancer. Now being faced with my own cancer I find myself a semi frequent guest of MM’s pity party, table for one. Oh and hold the wine that I’d really love to wash my frustration down with because alcohol supresses the bone marrow so I’m supposed to abstain. 

I am glad I celebrated my birthday, if I didn’t, I would be letting the bitterness win. Keeping a positive attitude is a weekly, sometimes daily struggle but I know I’m stronger than that and I always seem to find away to persevere. My birthday flowers from J and the lovely dinner we had helped the positive side win, and I’m thankful to still have so much in my life to celebrate. 

Tonight I celebrated my mom’s life by finally being brave enough to play the last voicemail I had from her. I discovered the message months after she passed and had always worried I would fall apart if I listened to it. It was short, a reminder to wear sunscreen to a lake party I was going to. But rather than falling apart, I felt comforted and smiled at sound of hearing her speak for the first time in years. I miss her everyday, and though it’s gotten easier with time I think of her often. My heart goes out to all of those going through that loss right now. 

MM

Well it took me two days to get my CBC (complete blood cell count) back and it made me miss the convenience of Roswell and their online portal which displays the results when they’re available. I’m told such a portal is being worked on here in Ithaca. I should have been able to find out my results on Thursday but alas my oncologist was out so the nurses needed to wait until Friday to get his approval to release them. This kind of thing happens A LOT and is pretty frustrating as the anxiety builds every month over what the numbers are and what that will mean.

The last two CBC results were pretty good, well for me anyway! WBC (white blood cell count) was 3.4 and then 3.1. The neutrophils (body’s ability to fight off infection) were at 1,800 followed by 1,000. Normal WBC is 4-10, and as for neutrophils it should be above 1,600. This time around my WBC was 2.8 and my neutrophils were 700. Yes I can continue being monitored with no treatment but my heart sunk a little to hear it things went down again.

Four months ago I had a scare, the lowest numbers I had ever seen since my diagnosis. WBC was 1.4 and neutrophils were 400. I was on the brink of having to do another bone marrow biopsy but doing everything in my power to boost those levels up. When they shot up to WBC of 3.4 and neutrophils of 1,600 I was determined to keep them that high. Daily exercise, meditation to help change my outlook, adhering to my anti-cancer diet, and limited alcohol intake (the bone marrow is not a fan of alcohol). But everyone knows that the holidays promotes over indulging, and that I did.

On Friday I hopped on the exercise bike after work and then made a healthy but hearty, immune boosting soup. I’m back on the wagon and taking this teeny setback as motivation to  stay on come hell or high water.

MM

2015 began and ended on two very exciting notes – moving into our new home in January and getting engaged the day before Christmas Eve. But in between I saw more needles and machines than I had ever hoped to see in my lifetime, and it marked the year that I, MM, was diagnosed with MM (Multiple Myeloma). Needless to say there is a sense of accomplishment having successfully made it through the year with no treatment yet. In a nutshell this past year was both the best and the worst year of my life.

As I try to mentally prepare myself for my monthly date with yet another beloved needle today I wonder about the year ahead. What will my numbers be like when I get the results tomorrow? Will they be stable every month? What are the chances that I can get through the whole year without having to start treatment? My fingers and toes are all crossed in the hopes that I’ll defy the odds yet again this year as spending a month in a hospital bed isn’t very conducive to planning a summer wedding, and more importantly, it freaks me the hell out. Ports, IVs, stem cell collection… ugh, I can’t even handle a needle in my arm for five seconds. And yes lovely nurse lady I am well aware that an IV is not a needle, but it’s still something hanging out of my arm.

For now I find myself feeling beyond lucky. From what I was told back in April, I should have already gone through all the scary treatments, but despite a scare a few months ago I’m not there yet. Most recently I was told there’s a possibility I could go on like this the rest of my life. While a part of me wants to throw myself a large pity party at the thought of a lifetime of monthly worry, doctors appointments, tests, and needles, I try to remind myself constantly of the alternative. It could be worse. Really, really, worse. Enter visions of hospital beds…

I had thought my first post would in fact be about 2015 – what it felt like to be handed such a hefty diagnosis or the importance of being your own advocate. I’ll get to those posts I promise, but for right now I’m putting 2015 behind me and focusing on the road ahead. Bring it on 2016, I’m ready for the next round.

MM