What does it mean to just be or feel blah? As a noun it could mean a “general feeling of discomfort, dissatisfaction, or depression” or as an adjective it could mean “low in spirit, health; down”.  Sometimes I think “blah” is the calm after the storm, as in after a wave of emotions ensues, “blah” is what you feel after the tide settles. Neither happy nor sad; emotionless. Blah is how I can best describe my mood after my check in at Roswell yesterday. Things remain stable yet there were some unexpected conversations and events, both good and bad. 

THE GOOD

We started the day with a stop at our favorite juice bar in Buffalo for breakfast, and after digesting the amazing food we made our way to the CO+OP market to get one of their yummy flourless, sugarless brownies to have as a treat after my blood work. There was virtually no wait for the blood work or the bone density scan. When I met with my BMT specialist he reiterated that that there was still a chance that I might not ever have to do treatment and that I could start meeting with him yearly rather than every six months. The bone density scan also showed no traces of Osteopenia in my left femur that was present a year ago. All along I thought I was just trying to prevent it from turning into Osteoporosis not knowing the Osteopenia could be reversed. I’m crediting my calcium rich clean diet for helping out with that in addition to the D3 supplements that I take daily.

THE UNEXPECTED (A.K.A. -THE BAD)

I had about 10 vials of blood drawn at the lab and for whatever reason that needle hurt much worse than the last few draws I’ve had. During our time at the BMT clinic the nurse didn’t mention CBC results, and it was then we discovered that the CBC hadn’t been ordered (even though I specifically requested it through the patient portal) and I would have to be poked again. I spent the whole week abstaining from alcohol, eating well and exercising and couldn’t wait to hear if my neutrophils (immunity) had come up. Now I would likely not find out the results till the next day. If the CBC would have been done with the rest of the initial vials, I would have received the results at my BMT appointment. THEN there were the vaccines. I ended up agreeing to a 3 in 1 vaccine that apparently would be three separate shots if I did them in Ithaca. Since my body wiped out all of my childhood vaccines I’m supposed to get them all again though no one can say if my body will wipe them out again. And you all know from previous posts how much of a baby I am when it comes to needles.

I was only prepared for one needle poke yesterday and it turned into three. At the end of it all I was laying on the bed with three bandages between my two arms and tears in my eyes. But to be honest I don’t know what tears were from what. During the appointment the topic of our wedding had come up and my doctor asked about kids (warning, slightly personal info is about to be released). A year ago we were a young couple, not yet engaged, I had just been diagnosed and we were thrown into a meeting with a fertility specialist because I would be unable to have kids after treatment. It was a lot to take in on top of a diagnosis, with no plans just yet for marriage and no discussion between us regarding children. Luckily I never had to make that big decision as I didn’t have to start treatment but I wasn’t expecting what I’d be told just a year later. We both have been undecided about kids and knew we’d be blessed with a full life even if it was just us two, but in my head it was always our choice alone either way. In that moment it all changed when my doctor told me it’s not recommended that I ever become pregnant as there is no telling how my body would handle it, and it could cause me great harm. Yes, I am beyond fortunate to be in either the MGUS or Smoldering state of Myeloma. I am not active enough to treat. But my white cells and neutrophils are not indicative of the majority of people with MGUS or Smoldering Myeloma, they run much much lower. I am a rarity and no one knows why my body acts the way that it does.

Case in point I am now on antibiotics for what appears to be a simple bug bite.  My left elbow is swollen, red, painful, and warmer than the rest of my body. The doctor said I have an infection and I told him this is the second time this has happened in a matter of months and has otherwise never happened. For me there is great risk if I contract a serious illness with how my body would be able or not be able to fight it off. Adding a growing life inside of me poses great risk to my life and it is something I pondered might be the case before having my doctor confirm it. But still the fact that it wasn’t really my choice any longer brought on the water works and just made me angrier with this disease taking yet a tighter hold over my life.  We briefly discussed his suggestions of surrogacy or adoption but honestly this roller coaster of a disease is about all I can wrap my brain around at the moment. The wedding and my health are the two biggest focuses, anything else is a discussion for another day, or year rather.

ANGELS HERE ON EARTH

We sat in the examination room in two basic chairs waiting for the nurse to come back with my vaccine while I tried to let everything the doctor just told me sink in. In comes this lady who looked Preakness ready in her fancy black and white clothes and giant wide brimmed sun hat. She had with her a cart of various things and then offered us a piece or two of candy with a big, friendly smile. I politely declined and stated my usual “thanks but I don’t eat sugar” statement, after which she pulled out the “secret” stash of sugar free candy. She then asked what kind of cancer I had, to which I gave her the quick one minute version and she proclaimed that she had something just for me. Out came this bag of silver tokens and she told me in order for it to work I had to close my eyes and reach into the bag and pull out one trinket. She stressed the importance of closing your eyes and sensing which was the right one to pick. So here is what I made out with and yeah there were more tears lol:

STILL FINDING STRENGTH

As I mentioned, I was still waiting on CBC to come back. I finally heard back this morning and while things came up a tiny bit (neutrophils are up from 300 to 590, but 1,500 and above is normal) I still feel defeat and frustration over everything, especially when I’ve worked so hard. Yes I am still blah, I am not myself and it might take a day or two more to shake it. But I have new found strength even if it’s not my own. I’ll get mine back, I always do.

Why is it so hard to make choices that we know will only benefit us in the long run? I am guilty as charged when it comes to this but all around me people are facing the same obstacle. Whether it be finding the time to exercise, deciding you really don’t need that first (or fifth, lol) cookie, that you really don’t need a drink everyday, or deciding that the relationship you’re forming isn’t good for you (or them) after all. There are excuses for everything and it’s amazing the way our brains are able to help us justify those excuses.

For me my biggest obstacles are diet and exercise (both mentally and physically). I know that these things are key to maintaining a long and healthy life. The diet part has gotten easier as I found the cleaner you eat the more you regret that decision to gorge yourself on an all you can eat Chinese buffet. Trust me when I say I recently allowed myself a cheat day doing just that and my long standing love affair with Chinese buffets that has blossomed since childhood met a quick end this past week. When you make the decision to eat well I have found most of those “comfort foods” end up being quite unsettling in your tummy and weren’t worth the few minutes of deliciousness in my mouth. Does that mean I’ll never stray from my diet again? No. It’s just going to happen. But I’m much happier and feel much better when I stick to it.

Now if I could just get on top of the exercise part. I’m disappointed to report that other than a nearly back breaking day of gardening over the weekend I have spent close to zero hours exercising in the past months; nor have I meditated (something I find vital to keeping up overall health). I keep telling myself, ok my lab work is coming up, I’m going to start getting on the bike everyday. But, something always comes up or I simply just don’t want to do it! Let’s be perfectly honest, I loath exercise, and I really wish that wasn’t the case. Running for me is a method of pure torture and while biking is somewhat more enjoyable I really don’t even enjoy that. But I NEED to be doing something. Exercise really and truly seems to boost my white blood cell count, something I desperately need. For me, everything I am trying to do is an attempt to prolong my life without treatments like chemo and a stem cell transplant. Why isn’t that motivation enough to ensure it happens? For once I am out of excuses…

Sometimes we just fall so deep into our habits that it’s just easier and more comfortable to stay where you are. But if we have the chance to improve our lives, why not take it? The brain is such an amazing and obviously vital part of our bodies. If only we could have our own personal angel on our shoulders motivating us to make positive choices and squash all the excuses. Too bad life doesn’t work that way! It’s hard and it’s a lot of work. I’ve written in past blog posts about the importance of being your own advocate in the medical world, but really it goes far beyond that. You need to be your own advocate for the best life you can give yourself. So often we blame the people or things around us for the bad in our lives, and while there are things we cannot change, we are ultimately in charge of finding a way to improve our lives when we’re down or nothing seems to be going right.

We are all human and by nature are going to make mistakes and choices that aren’t beneficial to our overall well being. It’s a struggle to stay on the positive end for many of us, I’m the first to admit that whenever I am commended for my upbeat attitude with my own health battle. And I’m still learning and working towards an improved self. In the meantime if anyone has the secret to boosting motivation, I’m all ears!

It seems unreal that somewhere around 525,600 minutes (thank you Rent for doing the math) or in simpler terms, one year, has passed since my life changed forever. When I got my diagnosis in April of 2015, I waited a whole week to process it before I shared it publicly, mostly because I had a lot of research to do to comprehend the information laid before me. Then of course there was the period of shock and denial. I still find it odd that Multiple Myeloma is the second largest form of blood cancer yet very few people in the world even know what it is, myself included up until a year ago.

This past year has been a roller coaster of emotions and and constant struggle to pull myself up each hill of the ride to keep myself on top. At the end of the day I know despite my misfortune of having this disease that I am blessed. I’m still here a year later, and I’ve gone through that whole year not having to start the horrible treatment that so many others have had no choice but to do right away. It seems crazy that even though my white blood cell count is ridiculously low, that the only illness that I have battled since diagnosis is one common chest cold due to a ill prepared camping trip. Though I believe my clean diet plays a huge factor in this (don’t worry, I’ll ramble about that in a different post!) My Myeloma markers themselves are nearly identical to the numbers seen at diagnosis, no better, no worse. So I remain in the smoldering state of Myeloma, where I hope to stay and never graduate to full blown Multiple Myeloma.

I want to take this opportunity to thank each and everyone of you that is been on this journey with me, whether it be in person, prayer, or spirit. You have impacted my life more than you’ll ever know and have helped me to see the light when my attitude turns bitter. To the countless people who donated to the medical expense account that friends graciously set up for me last year, there isn’t a day that goes by that I am not eternally thankful for the help in easing the financial burden of all of the numerous trips to Buffalo for testing as well as the costly procedures involved. They are things that treatment or not, my life will be filled with in the years to come, with no end in sight unless a cure is found. I’m truly blessed and touched by you all.

So what path does this journey take me from here? As I mentioned recently I still have regular lab work, though I’ve received the green light to have blood drawn every six weeks rather than every four weeks (insert happy dance). Some the major tests will happen on a yearly basis, some less frequently so long as my markers stay the same. Though I’d be ok with never having that giant bone marrow biopsy needle near my backside again, I know it’s in the future somewhere. I’m due back at Roswell on May 23rd to meet with my Bone Marrow Transplant Specialist where I will also get my yearly bone density scan to ensure that my Osteopenia (onset of Osteoporosis, in my case caused by the Myeloma). If all goes well I won’t need to go up there for six more months, though I will still have my every three month appointments with my local oncologist. I think it might even be safe to say that my goal of walking down the aisle in July not yet having done treatment might not be so crazy after all?

I will close with a few inspiring words from the song Seasons of Love from the musical Rent:

Five hundred twenty five thousand six hundred minutes
How do you measure, measure a year?

In daylights, in sunsets
In midnights, in cups of coffee
In inches, in miles, in laughter, in strife
In five hundred twenty five thousand six hundred minutes
How do you measure a year in the life?

How about love?
Measure in love

Read more: RENT – Seasons Of Love Lyrics | MetroLyrics

Enjoy life to the fullest, embrace every moment, and be thankful for the love around you. Let the good weigh out the bad. We are all just lucky to be here and be loved.

MM

The last thing on your mind when you’re going through a battery of tests or waiting for a diagnosis is the notion of adding more to your plate. Why would anyone be crazy enough to stress themselves out more? But let’s face it, the truth is stepping up to the plate and making sure your best interests are at heart will save you stress in the long run. This post isn’t just for people like me, this post is for everyone out there trying to find their way through maintaining good health. And believe you me, my perception of the medical world has changed drastically…

Let’s take a walk through memory lane first so you know how I used to handle my health. At the sign of any illness I had a nip it in the bud mentality, meaning at the onset of feeling myself coming down with something I was right in my doctor’s office looking for an antibiotic to prevent the illness from getting worse. While this seemed to prevent extended absences from work I also failed to ever let my body build up it’s own immunity and I can now say for certain that I have built up an immunity to the Z-Pak. I didn’t ask questions and I never researched any other methods to help keep up my own health. After all, doctor’s go to school and do research for many years to become experts, so I trusted the system completely. This is in no way a stab against medical professionals, it’s the opposite. I believe in many medical professionals and know they are able to save my life but I just don’t believe it leaving things all to science. I believe in fighting health issues: mind, body, and soul with the support of your doctor to guide you a long the way.

Key things to think about (I’ll elaborate underneath)

1. Metabolic blood panels done during annual routine physicals DO NOT check for anything and everything
2.  Listen to your body. If something doesn’t feel or seem right there might be something more to it
3. If you aren’t clicking with your medical provider, seek another opinion. Having someone in your corner is essential to receiving the best care, and  this is why I fired my Myeloma specialist
4. DO YOUR RESEARCH!!! Would you buy a car without making sure it’s right for you? Even after you have a diagnosis and work out a plan with you doctor, why stop there? So many things I have learned, and benefited from are things that I found on my own. Just don’t go overboard, it’s easy to make yourself crazy.
5. Ask questions! There are no dumb questions! This if your life we are talking about. Leaving out details could mean not choosing the treatment path that’s not right for you or worse could lead to misdiagnosis!
6. Get a good support system – if you don’t have a group of friends and/or family near by there are resources out there to get the support that you need.
7. If you are having trouble sleeping, losing weight, have low energy, etc. take a closer look at your diet rather that using quick fixes like prescription drugs or caffeine. You’d be surprised in the long term how much better you’ll feel.
8. Attitude is everything

1 – Blood work

In the months leading up to my diagnosis I had my annual physical including a metabolic blood panel. The blood work came back great, and I was healthy according to my doctor. At the same time I had an unrelated health issue and the specialist I was seeing for this issue wanted to check to see if I was anemic. They did a complete blood cell count and found that while I wasn’t anemic, my white cell count was shockingly low. Further testing led to the discovery of an abnormal protein indicative of bone marrow issues. This prompted a bone marrow biopsy and initial diagnosis. Had I not had this other set of blood work done, I would be living life thinking nothing was wrong until things potentially worsened and became apparent (and in a later stage for treatment). My advice to anyone finding themselves to be more tired than normal or low energy, get your complete blood cell count checked. Maybe it’s nothing, but it could quite possibly save your life!

2 – Listening to your body

I can honestly say prior to my diagnosis, something just didn’t seem right. I really and truly felt like crap all of the time. I kept telling myself, something isn’t right, I need to start eating better and exercising. But I didn’t, like many of us I found excuses to keep on eating whatever I wanted and not exercising (the latter is still a struggle!). It’s now obvious that there was something going on that I was ignoring. Yes I finally got myself into the doctor to pursue the issue by why do so many of us wait so long to take charge of our health?

3 – Clicking with your doctor

I was diagnosed in Ithaca where there are no Myeloma specialists and where the ability to have a stem cell transplant is non existent. My closest options to meet stem cell transplant (SCT) specialists were either in Rochester (1.5 hours away) and Buffalo (2.5 hours away). Since Roswell Park in Buffalo is a Cancer Research Institute, I felt it was worth the drive to go there. Everyone in my online Myeloma group urged me to seek out a Myeloma specialist while I was there to meet with the SCT specialist. I was so pleased to be paired with a young Myeloma specialist, I thought: she must know all the lastest research! But what I was met with was not pleasant at all. This doctor was cold and treated me like a number. What I expected to hear was, “we are going to fight this with everything we’ve got, I’ve got your back”. Instead I was told things like, “well we are starting to see remission rates of 10 years rather than 5 years now”, and “no matter what we do, it will come back eventually”. Now I am not living in la la land. I know there is no cure for Myeloma but how is one supposed to keep a positive attitude when the doctor’s attitude was so cut and dry? I also mentioned to this doctor that J and I had made dietary changes (something I was quite proud of) and were sticking to an all organic, sugar free diet, and mentioned the supplements I was taking that I found to be beneficial for Myeloma. Her response was that while it’s good to eat healthy that there is no correlation between diet and Myeloma according to research and that she didn’t want me taking any supplements! What’s scary to me is how many other doctors say the same thing? I see people in my online group giving advice to eat whatever you want and enjoy what’s left in life. No, no! At any rate this was the point that I fired my Myeloma specialist. I am happy to say I will never step foot in her cold, unwelcoming door. I’m not one of her 50-70 year old patients where 10 more years is promising. That’s not good enough. I left her office convinced I wouldn’t be among the living in 5-10 years and more depressed that when I was diagnosed. It took me weeks to shake it off. But at least now I don’t have to worry about having a cry about the state of my health and have her stare at me blankly like I’m a crazy person. I’m considering meeting a specialist in the city but since I am in the monitoring phase, there doesn’t seem to be as much of a push at the moment. In whatever medical situation you have make sure you are being treated by someone you trust, it’s half of the battle really.

4 – Doing your research

It’s sad to say that if you want to look into natural options for care to go along with the medical side you are kind of on your own. Yes there are places that can help but they often are pricey, not covered by insurance, and it’s hard to tell if it will be the right fit for you. I am lucky enough to have an amazing massage therapist who it certified in Chinese medicine who put me on the right track to a few things such as the benefits of turmeric (if you suffer from pain, fibromyalgia, inflammation, you might want to look into this). My first few weeks into diagnosis I was not in a good place, I didn’t know what to do or where to turn and was completely stressed out. Yes the countless hours I spent researching natural remedies that could help me took a toll on me, but I knew I needed to do it. I watched what chemo did to my mom the last year she was here and I was determined to do what I could to prevent myself from getting to that state if possible. It was worth a try anyway. I knew that I was in charge of my health and I needed to stay on top of it. There’s a lot of information out there. Some good, some quacky, and some things that flat out could make things worse, all of which could leave you penniless unless insurance starts to cover these things! So tread lightly and if you need some tips feel free to ask me. I’m practically a walking encyclopedia on this stuff now, or as my brother likes to say, “your’re turning into a crunchy hippy, I love it”. I Never thought that day would come but as I sit here typing this wearing my aluminum free deodorant and natural beauty products, there’s not much denying it. But you can hardly tell through my Anthropolgie attire 😉

5 – Ask questions 

Most of my doctors’ offices have signs posted urging the patients to ask questions, hopefully yours do too! Regardless, make sure that you are asking questions concerning your health. Jot some things down ahead of your appointments so that you don’t forget to ask the things you are thinking of. So many of us leave it up to the doctor to ask us pertinent questions but they don’t know what’s going on or how we are feeling unless we tell them. For example, every time I see my oncologist I tell him about my lower back pain because I know that when Myeloma gets into the bones, it often picks the lower back first and it’s victims end up with broken vertebrae. I’ve had MRI’s and multiple X-rays that have shown no lesions so it appears I don’t need to worry just yet. But I know it’s important that my doctor knows this, even if I told him at the last appointment. There were also levels people talked about in my Myeloma group like M spike. I have never heard my doctor say some of this terminology so the next appointment I asked him what my M spike was. Knowledge is power and it pays to make sure that you have as much of it as you need!

6 – Support system

Support systems are key to any problem you face in life: breakups, loss, death, illnesses. If you are going through a tough time make sure that you have someone to turn to, no one should have the face the bumps in life alone. Even if you don’t have someone close by there are groups for virtually everything. After my mother’s passing I forced myself to go to a weekly support group for young adults that were grieving. It was tough, there were times I didn’t want to go but part of the requirement was being there each week. Each time I went I was so glad I did after. I’m blessed to have an amazing support group of family, friends, and coworkers both near and far. It honestly changed my whole perception on this diagnosis. I went from being bitter, depressed, and making ill timed jokes to J about when I am gone and he’ll still be here, to wanting to fight this head on with everything I had. J and all of the other amazing people around me gave me that power and determination. Sometimes even with the best of people around you, you need a little something else. For me, I will be attending my first young people with cancer support group next Tuesday. I love the people in my life but I’ve come to realize after my retreat in NJ how much comfort you find in others that are going through a similar thing. People who understand the ups and downs or the bitterness I fight off of not getting to live my life like the amazing people around me. Most of all, don’t be afraid to ask for help. The biggest challenge is walking through the door of a support group, or one on one counseling session. But what’s the harm in going? Nothing. And if it helps, well you’ll be so glad you did it.

7 – Diet versus prescription drugs

Ok so if I talked to myself 5 years ok that self would be in disbelief of my lifestyle changes and would probably think it’s pretty wacky. Am I bitter when you go to grab that yummy looking desert or tasty adult beverage that I can’t have? Yes, but do I judge you for indulging? No, because I was right there a year ago. In all honesty, I,  like the majority of others don’t feel compelled to make lifestyle or diet changes until there is a problem. But how many people could prevent said problem if they were a bit more mindful about what they put in their bodies? We live in a pill happy society. Yes there are children and adults alike who are able to survive because of medication, but there are also a lot of quick fix prescription writing going on too. I am one such example, every time I go to the doctor she asks how I’m doing mentally with everything going on. She generally extends an offer for something to help me sleep or cope. I tried that after my mom and the end result? I was an even bigger mess! I felt nothing, I couldn’t cry at times I felt I should be crying. I was young and though I shouldn’t have had drinks while on those things, I did and it wasn’t pretty. It was all a cover up of the underlying problem. I immediately stopped taking those pills, sought out the bereavement group I mentioned earlier and got through it all without the medication. Now you couldn’t pay me to take those things, I would never want to go back there. I’ve heard amazing results when cutting out processed sugar for cancer patients, children with diagnosed with attention disorders and much more. I can say the difference between me now and me a year ago, cancer aside, I feel better! Yes it was hard cutting out processed sugar and yes it costs more to ensure I know where my food is coming from and that it doesn’t contain hormones, pesticides or antibiotics. I sleep better, have more energy, and despite the fact that I have virtually no immunity, I have seemingly gone through this cold and flu season unscathed (essential oils aid in this as well). To top it off, I lost 10 pounds in the process that I had gained over the past 5 years. It’s not always easy and the first month was a struggle but the amazing thing is once you do it you realize you don’t even want those things. To be honest, when I cave and have one of the free cookies in the kitchen at work after a seminar, it doesn’t taste the same, the sugary aftertaste lingers in my mouth and I feel crappy when I crash from the sugar high. I hope the latest news about a vast supply of Parmesan cheese that uses wood pulp as a filler opens some eyes. No it won’t kill you, but that’s not the point. People don’t seem to care about what they are eating, but the truth is, there are some really gross things in a lot of food we eat listed under hard to pronounce names. If you knew what they all were you might think twice. I’m not saying everyone should follow my diet, I’m just saying find what’s right for you and your needs. Diet changes are hard but I can say I’m so glad I changed mine.

8 – Attitude is everything

Research has shown that white blood cell count can be higher with a positive mindset. When you are going through a rough patch in life it’s so hard to maintain a positive attitude. It’s important to take steps for keeping up positive energy even when things are good as well. It will leave you better prepared for when a storm hits. Exercise, mediation, reading, are all things you can do to increase your outlook. Books and meditations by Shakti Gawain are some of my personal favorites. Her words have helped me immensely.

I think I can, I think I can… Today I find myself chanelling The Little Engine That Could. In light of receiving my blood cell counts on Friday, I found myself deeply disappointed. I had followed my diet, I limited alcohol intake, and I expected things to bounce back, but they DIDN’T. My WBC was 2.6, and my neutrophils dropped from 700 to 600. Nothing significant but I was confident they’d be higher. Like the Little Engine, I tried and tried, by why didn’t it work? 

Feeling angry and bitter throughout most of the weekend I avoided posting my results until I could wrap my head around it in a more positive manner. I had seen the story of a little girl in my hometown who went home to heaven last week at the age of 9. This beautiful little creature fought longer, harder and endured much more than I have. Suddenly I found it harder to justify my anger in regards to my own battle. I’ve got to make the best of this… Just like that little angel did. I have to keep trying… Just like the Little Engine did.

Long before I received my diagnosis I discovered my favorite Maya Angelou quote of all time:

It didn’t dawn on me until today that those words need to be my motto. I hate the fact that I have cancer. I’m keeping myself as healthy as possible in attempt to keep it at bay (changing the diagnosis is pretty unrealistic). But I can’t change anythinv without keeping up the attitude. So let’s take a closer look back at the past month:

• Followed anti-cancer diet ✔️
• Limited adult beverages to once a week ✔️
• Spent 20-30 minutes daily on exercise bike✖️
• Meditation and reading to keep positive energy and mind ✖️

Ok so I didn’t try as hard as I thought. So I must keep chugging along and moving upward. Truth be told, my attitude is already much better today than yesterday. Maya Angelou, you were a wise lady…

MM

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