![]() I did not know at that time that 6 months later I would face breast cancer, I did not know how challenging it would become to juggle working, building a new non-profit and managing breast cancer all at the same time. During the first few months of my diagnosis I took a step back and thankfully Community Navigators was in a good place for me to take a step back for the time being. Goes to show you that even when you think your healthy and have all the time in the world to make your dreams come true; you never really know what the future will bring so YOLO! (You only live once) Before breast cancer decided to impact my life, I worked a lot but I didn’t mind. I personally have known I wanted to help people with disabilities since I was a young girl. Unlike my friends in college who did not know what they wanted to do when they grew up, I knew what the track was for me. I attended Southern Connecticut State University to study Therapeutic Recreation with a focus on disability studies. Including people with disabilities within their communities was always something very important to me. After gaining experience in different aspects in the field I knew for me to be truly happy I would probably need to break off and start my own agency to help individuals with disabilities and their families. In 2014, my boss passed away to cancer and I knew it was time to jump and take a risk. By 2015, I gave my notice and announced the beginning of Community Navigators, a non-profit driven to help create inclusive opportunities in individuals own communities. Now that i’ve been battling breast cancer for over a year its time to try get back into the groove of life and work. CNI means a lot to me and my husband left his trucking business to fill my shoes while I was in treatment. It confuses people why i’m a volunteer CEO, well treatments make you tired, my hip can make it very challenging to help people when its flaring, I am not where I was physically before cancer and I can’t always anticipate when I can assist. Many of us woman & men with metastatic breast cancer look good and healthy. Many of us put on a phenomenal act to continue to live in the world everyone else lives in. I struggle feeling guilty not being able to do more. I’m learning how to make compromises with life. Life keeps going and its moves very quickly. You see friends and others growing in their professions. You see other thrivers working like they are not sick. All of this makes taking it easy and taking care of yourself very challenging because you don’t want to be left behind. But the biggest reality is I (we) can not rely on generous donations forever and in order to keep a roof over our heads working has to happen. Disability is helpful but it doesn’t pay the bills. Most people you see lately who get struck with cancer their go-fund me pages help them through the worse part of their journey. All the help we realized definitely helped during the initial part of my journey and couldn’t not be more thankful for all the love and support! But we cannot depend on everyones generosity until my cancer ultimately wins. Some of my best friends have intellectual disabilities and they stood strongly next to me during the beginning of my journey, so I never stepped away from “work” and i’m lucky I don’t view spending time with people with disabilities as work but as time with my friends. But when I try to jump back into everything the biggest battle working is doctors appointments, fatigue, bone pain, chemo brain and insecurities of cancer; makes it a serious challenge. I rarely work alone, Martin or someone is usually with me. Not because I can’t work alone but it gives me a sense of support. I’m happy my knowledge and years of experience keeps me needed and included. Yes, keeping my mind off cancer and doing something else is wonderful but hard to keep balanced. I’m a go getter so its hard for me to stay on the side lines and my body tells me very loudly to stop and slow down. I’m learning how to listen to my body and not be super woman. I am very confident but nothing prepares you to explain all the time I don’t feel well there is no way I am get up. Its even harder because you know you look healthy. Want to know more about the type of work I do? Feel free to check out CNI's website! Don't forget to LIKE my new Facebook page! Categories
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“Girl meets boy. Girl and boy fall in love. Boy gets sick. Boy dies. Girl is sad.” “Boy meets girl. Boy and girl fall in love. Girl gets sick. Girl dies. Boy is sad.” We used to laugh when Larissa emerged from her room in tears after finishing yet another formulaic teen romance by Lurlene McDaniel. But one day this past year, it hit me how totally unfunny the scenario was. Because my daughter was living the story line. She had met Martin, my wonderful son-in-law in sixth grade. It wasn’t until they both grew up that they found the fairy tale love most moms dream their daughters will find but fall in a fairy tale love they did. And I had the privilege of starting to plan their fairy tale wedding, trying on bridal gowns until my talented, lovely, brilliant daughter finally settled on one that made her look like a fairy tale princess, complete with a handmade veil and tiara. We found a castle for the venue (okay, she and Martin chose the more modern side and planned on a boating entrance instead of a horse and carriage) but it was still part of the St. Clemens castle property. We tasted wedding cakes fit for a royal family. We bonded over icky stationery and talking about silly traditions that they would or would not follow and the thousands of details mothers and daughters sweat when a wedding is 10 months away. And then, less than three months after Larissa and Martin got engaged and set their date, girl got sick. Really. Really really sick. My beautiful daughter was diagnosed with breast cancer. The next few months were a blur – confirmed diagnosis, double mastectomy, the appearance of her biological family I’d always prayed we’d meet in wonderfully happy fairy tale circumstances, upgrading her cancer to Stage II because of some tiny lymph node involvement, and three weeks later finding out that she had Stage IV breast cancer because it had aggressively metastacized to her bones and liver. Larissa was not just terrified from the lump she’d found that everyone tried to convince her was probably just a cyst. She went from having her whole life spread out years in front of her to a high statistical probability of the fourth stage not just of cancer but of McDaniel’s plot line. Heart-stopping fear is not supposed to happen to mothers this way. It’s supposed to come in tiny stages – like when our daughters take their first steps and we worry they will fall and split their heads open. Like when we send them off to nursery school and kindergarten and wonder if they’ll do well, make friends, survive being without us, and be loved as much by their teachers as they are by us. Like when they learn to drive and we spend countless nights lying awake, panicking at the sound of a distant siren and only relaxing when they call to tell you they are safely staying over at a friends house or we hear them trying to sneak in the house past curfew. Like when they go to college and we realize they really are all grown up and we hope and pray we did a good enough job raising them that they will turn into functional adults over the next four or so years without dropping out, losing sight of their career goals, or something worse given what those of us who went to college ourselves know what can happen on college campuses. And all those other moments in between when we know they are growing away from us and we are helpless to protect them any longer. But nothing, nothing, nothing can compare to the abject fear that floods a mother’s heart and soul the way a phone call from your daughter telling you that she has cancer does. And nothing, nothing, nothing can compare to the pain of knowing that no amount of “coulda woulda shoulda” self-flagellation will ever turn back the clock to make things the way they were before – when fear was so tiny, so petty, so trivial compared to the fear you know your daughter now faces and, because she does, you do, too. But on the flip and positive side, nothing, nothing, nothing can make your quest to be the perfect mother – the most supportive, the most loving, the most everything – more poignant than the journey you make with your daughter as she takes the lead forging a bravery you could never imagine, a drive to do what she only dreamed of before it might be too late, a tolerance for real pain and disfigurement of her model’s body and loss of her gorgeous hair and awareness that maybe the clock really is ticking and worse, maybe even running out. And you realize that you do have the strength to be there for her – as much as she wants and allows you to be. I know I am not alone in the rollercoaster of emotions I’ve experienced over the past year. I know I’m not alone in the tears I’ve cried, the vicarious pain I’ve felt, the wishing it were me instead of her, the praying I will wake up from this nightmare and she will be well. The desperate hope for a cure, scouring medical journals and websites for the latest news on potential breakthroughs. I know that this is what all mothers of daughters living with, and who have already died from, this horrid disease experience. A disease more unpredictable than New England weather and more damaging that the most horrific storms. I also know I am not alone in the love I feel for my daughter and how much it has grown more than I ever could have thought possible. So I dedicate this Mothers’ Day and this blog post to all mothers affected by their daughter’s cancer. Who have lived out McDaniel’s plot line, who are still surviving, and who, like my daughter, consider themselves to be thriving. Because Larissa is. Despite all setbacks, despite the stress of daily life, despite the normal ups and downs of being a woman in today’s world, she is thriving. And because of her, so am I. Motherhood and Mother’s Day has never been more precious or meaningful than it is right now. And for that I thank God and Larissa and her prince, Martin, for making it so. How is Larissa's journey going? Check up on her latest health update here... This mothers day donate to research!This mothers day I will be spending with my mom and my husbands mother. I look at them with envy because I will not share these memories with my own kids. If you want to help donate to research this mothers day and make sure their is money going to research (especially metastatic breast cancer) you could be saving someones mother and daughter! (Please specify you wish to donate to metastatic breast cancer research or simply note my name. Pink Agenda will make sure it will go to the right targeted metastatic breast cancer research!) ![]() Usually when something new occurs in my journey I try to post soon after, but after Tuesday’s news I needed time to process. I love sharing the positive parts of my journey and I try to limit the negative. But the reality is cancer comes with a lot more bad news than good. A few weeks ago I visited Dana Farber and we decided to change treatments, which came at the right time after all. On May 3, I went for my quarterly CT scan. I truly wasn’t worried. Tuesday May 9th, I went in for my scan results and received not the best news: My scans showed progression of the cancer in both my hip and liver. No progression is good, but luckily they found it early. This time progression doesn’t change anything for me since I am changing treatments anyway. Almost a year with no progression is good and hopefully I will react just as well to the hormone drugs Ibrance and letrozole as I did to chemo, and return to stable. Over the past several months my hip pain has flared then reduced several times per month. A part of me thought it was the weather, but I learned on Tuesday that I have a new hole in my hip, as well as arthritis, so the flares are probably a combination of the two issues. Up to this point I have been very resistant to my doctor’s suggestion that I have a hip replacement, but it’s looking more and more like that’s in my cards. I definitely didn’t handle the news badly, I just went on with what I had planned to do that day, which was to share my experiences with my amazing nurses for a video for Starling Physicians. Before we started filming, my nurse Rachel asked if I was OK. I looked at her funny and said “Yeah, why not?” She said she knew about my cancer’s progression, but for me, sharing my story and being in front of a camera is what I love. The show must go on. Now, three days later, the hormones -- and especially the Ibrance side effects -- are kicking in and I guess it’s time to process my reality. Progression…
What is ibrance?
Everything dealing with cancer comes with side effects, and both of my new drugs come with their share, but no more weekly infusions! So there’s that. Side effects could include: low red blood cell counts and low platelet counts, dizziness, shortness of breath, weakness, infections, tiredness, sore mouth, nosebleeds, hair thinning or hair loss (can’t catch a break there…), vomiting, rash and loss of appetite (so I’ll get skinnier … but I’m starting to miss my butt). Overall, I’m scared. I’m scared to start new medication. I’m scared I won’t have the chance to travel across America. I’m still sad I can’t have kids (not sure where that one came from). I’m afraid to leave Martin and of the idea that he will move on one day. This is why some of us with terminal cancer don’t always know how to respond to well-meaning comments like “You got this” or “You’ll beat this.” Look at me. I’m a positive and stubborn person, but cancer is a foe that doesn’t play fair. Cancer is something no one really has control over. But just like Maya Angelou said, “You may trod me in the very dirt / But still, like dust, I’ll rise.” I’ll rise in the face of my cancer, and in the end I will be the winner. Do you want to help?This mothers day I will be spending with my mom and my husbands mother. I look at them with envy because I will not share these memories with my own kids. If you want to help donate to research this mothers day and make sure their is money going to research (especially metastatic breast cancer) you could be saving someones mother and daughter!
(Please specify you wish to donate to metastatic breast cancer research or simply note my name. Pink Agenda will make sure it will go to the right targeted metastatic breast cancer research!) One year ago I was faced with news most people can’t imagine hearing, but instead of taking time to absorb the news we jumped into action to plan our wedding in six days. SIX days! On April 27th I stared at my oncologist while she explained what metastatic breast cancer was and the different approaches for treatment. The word “chemotherapy” of course came out of her mouth and, human nature being what it is, my hands immediately reached for my long, beautiful, curly hair. My fiance had proposed to me just five months prior and we had set a wedding date for Oct. 8, 2016. We picked that date because it would mean that we would be getting married on our fifth anniversary of dating. And I was looking forward to being married on that date. Leading up to this, I did everything in my power to avoid chemotherapy. It’s scary when you research chemotherapy. You will read that chemo kills -- or causes more cancers. You will see all the stories of how toxic chemo is. I read everything, and I also read everything on how to avoid having chemo. Yes, some very brave women have avoided chemotherapy altogether, but it’s a different battleground when you have metastatic breast cancer. After the doctor left the room, the famous question I have written about time and time again was asked: “What do you want, Larissa?” My response: “I just want to marry Martin.” At that time, it was up in the air whether I was going to try hormone treatments first or chemotherapy, but I did know I wouldn’t be myself anymore. I knew my hair wouldn’t be the same and my body wouldn’t feel the same. If I went the chemotherapy route I would be starting within a week, so I quickly said, “We NEED to get married this coming Saturday.” Luckily, no one in my life thought that would be impossible. If you know me personally, this really doesn’t sound impossible. I seem to always pull off the impossible, or whatever I put my mind to. (If only cancer could bend to my will!) At first I envisioned a very small gathering of friends and family by the beach at my friend’s restaurant, Lenny’s on the Beach. I immediately messaged my friend and he said of course. I called my maid of honor Bonnie, who was out of town, to let her know to hurry back. We called the wedding dress store to see if I could get my dress early. They said “No, BUT the dress you originally tried on is still here and we can sell you that one.” DONE! Then a marvelous surprise happened. My new-found biological Aunt Carol and Uncle Todd called after they heard of my wedding planning. I caught them up to speed and they said absolutely not would I have the wedding at Lenny’s. They called the Norwich Inn & Spa, found that it was available, and booked it. I was caught off guard, and was absolutely speechless. Before I could even process how I was going to pay for it, they told me that was taken care of too! They didn’t have to do this for us (they had only learned of my existence a few weeks prior) but apparently some of my giving and caring traits come from that side of my family! (My biological mother was Uncle Todd’s sister.) OK … I have a dress … the venue for my “first look” pictures (they would be at Lenny’s) … a reception spot … my nephew is going to DJ at the reception … My niece and good friend Courtney jumped into action to help me when my chest pain continued to flare and micro-managing was becoming difficult. “Tomorrow we are going to get the bridesmaid dresses.” OK, great. She helped find us a photographer: Stephanie Chasse Photography. Another bridesmaid, Janica, got a party bus donated. Another bridesmaid, Marcy, started creating her lists (she's super great at lists). She prepared bandages since, as a breast cancer survivor, she knew how the still-healing wounds from my double mastectomy would feel in my dress. She and Courtney worked on many of the small details I would never have thought of in six days. Then everyone helped turn my living room into a bridal suite. My mom was working with a baker we knew to get the cake. My Aunt Carol was collecting and creating the wedding favors. I reached out to our florist (who’s daughter was one of my best friends growing up) and told them about the change of plans. Just For You Florist jumped into action as well! And all of this was done in just six days. My Aunt Lisa worked to get a justice of the peace who happened to be her best friend. Martin and I filed for and got our marriage license. Martin and his groomsmen … Well, Martin is an amazing and wonderful man, but he's still a guy. He and his groomsmen waited until three days before the wedding to get fitted for their tuxes. But to be fair … six days. The night before my wedding my back and chest were in intense, sharp pain. While at the mall I collapsed from the pain and finally decided I was not superwoman and that I should take the pain medication. The idea of pain medication and liver metastasis scared me then and still do now. I had researched medical marijuana, but was too scared to try it. But once the pain got really bad I had no choice, as it was the only thing that relaxed the spasms. So judge away if you want, but it was the only thing that helped. My bridesmaids originally were going to take me out for a small bachelorette, but the pain was so bad we had to stay in and order takeout. (I will have a bachelorette party someday! Just wait and see! I will dress up like a princess or Scarlett O’Hara – I’m just waiting for the right opportunity!) Most brides are usually nervous wrecks, but I wasn’t. I could barely sleep the night before, but who can? (Plus I had a headful of curlers.)
And my wedding was magical. It was a small, beautiful dream wedding. Martin cried the entire day and I cried during our first dance. It seemed unreal -- six days and boom! I’m married! When we exchanged our vows (yep, we even wrote our own vows in six days) I went first.
[Side note from Bonnie the maid of honor: Trust me, there was not a dry eye in the room when they exchanged their vows. And, unbeknownst to Larissa, Martin had had those very same words (Wherever you go, I go. If you ride, I ride. If you fight, I fight) tattooed on his ribs just under the location where Larissa found her tumor just the day before. He planned to surprise Larissa after the wedding, and didn’t know she would use the same words in her vows.]
So, on this first anniversary of our wedding, I want to thank everyone who made May 7 possible, magical and special. And thank you, Martin, for marrying me last year and continuing to love me and stand by my side. Sorry in advance for the possible side effects that might make me slightly unbearable to be around. I’m not going to write a blog post pretending to know everything that happened yesterday in Washington D.C. I am not going to point fingers. President Trump made a promise to the people to change and replace the Affordable Care Act, so our cancer community has been bracing ourselves for this day. I still have hope the Senate will block this but more importantly I have faith in Connecticut; my home state to do the right thing. Now if you only think “lazy” people will be affected by these revisions or if you think people like me shouldn’t get “free” handouts please let me explain. I do not get free healthcare. I actually pay $600.00 per month for my plan through the exchange. You are either thinking “wow, that’s a lot,” or “oh, you should pay more”… I cannot afford more, but I’m not complaining because I’m thankful for my health insurance. It would absolutely suck if I couldn’t get good health insurance! Insurance companies hate people like me because I’m “expensive.” I have worked since I was 16 years old, I have paid into the system, I have paid into insurance pools when I was healthy and barely used my insurance. I didn’t ask to get cancer. Now that I need my health insurance to keep me alive insurance companies do not want me. Does the Affordable Care Act need revisions? Most people say yes, and some people say no. The real question is how to make those revisions so that they don’t hurt millions of people. Like I said, I’m not going to try to explain those details because I'm not an expert on this. My father, who is the CEO of Mental Health America, posted his response about yesterday’s passing vote in the House of Representatives, and what that can mean for anyone with pre-existing conditions. Some of you might find it helpful. Blog Post written by my father Paul Gionfriddo CEO of Mental Health America Just think… Do you know someone with a pre-existing condition who might be affected? You’re reading my blog… right? Well that means you know at least 1 person! So think of me if you must or think of anyone who has cancer, mental health, intellectual disabilities, Crohn’s, diabetes, heart problems, physical disabilities, or another pre-existing illnesses. Fight for all of us! Call your senators today! Don't say 'I'll read it later' read now! “These effects will be felt mostly by people with chronic conditions, just as drivers who have accidents and homeowners with storm damage experience increases in their insurance premiums. They will affect people with cancer and heart disease. They will affect millions with serious mental illnesses. This is not something we can ignore or forget as we move forward. Lives are in the balance. -- Paul Gionfriddo |