Here in New England Sunday could remind you of Spring, Monday could be freezing, Tuesday typical, Wednesday Summer, Thursday Blizzard, Friday Fall and Saturday 50’s.
Well most people say ‘Larissa you look so good’ or ‘your walking so much better’.
Well, New England and I are twins!
Sunday I can feel 31. Strong. On the move. Healthy. Days like this I can almost forget I have cancer for short intervals!
Monday I can feel anxious and nervous and I go back & forth about seeing a psychologist. Mondays can be predictable because no matter how used to chemotherapy I get, I still get nervous the night before.
Tuesday, oh my emotional, bittersweet Tuesday. Tuesdays are soooooo much fun! I get to feel almost every sense of emotion within a matter of a few hours. Anxious and desperately doing everything I can to prep for chemo while not forgetting to apply my numbing cream. Tuesday mornings if I walk out the door and forget my numbing cream, then for the next hour or two my anxiety is through the roof until they access my port. Then I usually have 1 or 2 hours of party time. My oncology nurses are very sweet women and if you’re slightly down somehow have the power to lift you up from it. They can make you feel brave and strong. Not sure what they eat at home but we all should eat whatever they eat. Then I leave, and start to wait for the side effects.
Wednesday usually sucks. If you see me out and about on a Wednesday, I’m pretending to be well. (I have many days where I put a smile on my face and try to keep looking forward to avoid possibly accidentally throwing up on someone.)
Thursday can usually feel the same.
Friday i’m bouncing back. Well, unless New England is about to get a storm or I’m having bad luck and my hip tumor starts to flair. And if my week turns unlucky I’m forced to relive what it feels like to have the feeling of satan slowly breaking my hip bone. And my husband has to fetch my cane and I suddenly appear 90.
Saturday on a week after my Lupron shot can become a brutal summer day. It’s so hot! It doesn’t matter how cold it is outside. I’m sweating. I can’t tell you how many times I contemplate laying naked in the snow just to get a relief. This isn’t just on Saturdays. My hot flashes can be all day everyday but a few days out from Lupron we have a monthly party us two. I always know to prepare for a fun day or two of the worst hot flashes that are so bad they make the rest of them for the month look like a walk in the park.
Then it’s back to Sunday and who knows what to expect.
From the time I was a baby, all I’ve known was my adoptive family. As long as I can remember I knew I was adopted. You can only withhold that truth for so long when you’re black and your parents are white. My whole life I wondered what my biological family would be like. Back in 2005 I reached out to Catholic Charities (the agency that arranged my adoption) to request information or get my original birth certificate. Shortly before reaching out to Catholic Charities I thought I could get my original birth information at the hospital I was born at - Backus Hospital in Norwich CT. They laughed at my request and said come back when you know your name. I said i’m “Larissa Gionfriddo;” well thats why they laughed, apparently this was NOT my birth name.
Catholic Charities back in 2005 attempted to help me. We paid them to do a search, which is one of their services they do. Veterans day 2005 I was bartending in New Haven on a Friday night. The man helping me called to tell me my results. My heart sank to the floor as I said hold on and rushed to the bathroom to avoid the loud music. He was of course in a rush to get home and enjoy his upcoming long weekend.
“I’m sorry to tell you that it wasn’t easy to find your mother. Unfortunately, she passed away. Sorry for your loss.”
I really, really do not know why in my life I hear the worst news by phone by very insensitive people, but it is what it is. I was devastated, young (19) and hormonally unstable. I took the news very hard and decided I needed to focus on school and really didn’t know what else I could do. They told me at the time there wasn’t anything I could do because she was not alive to give permission.
Fast forward 11 years…
…After hearing I had breast cancer from another insensitive man.
At least for me, I needed to be in the driver’s seat and have as much control as possible. When I got off the phone with the radiologist, and had my major end-of-life meltdown, my dad said, ‘what do you need?’ I said ‘I need to find my family’. I didn’t want to keep explaining to doctors who asked what is your family history? And my lifetime answer would be ‘adopted’. And then, ‘well in your adoption records did they report anything’ and I would say ‘well I have a family history of eczema’.
The day I was informed my life would be permanently changed, I knew that same question would be on repeat and honestly I wanted to know! My dad followed up with Catholic Charities immediately and a very nice woman helped.
He informed her what happened to me and what I was battling and asked would she contact me immediately to get me paperwork to make the formal request. She was confident after I supplied the paperwork that she could give me my mother’s name after a few days.
A week later, I got my mother’s name. Jacqueline. My moms name was Jacqueline! I remembered how traumatic the first time I searched for her was, and I wasn’t sure at that moment I could handle doing my own search. My husband Martin took to Google and Facebook for me. By the time I got home he said, ‘Look, I think this might be your Uncle’. We really didn’t know but all we could do was send him a Facebook message.
“Hello Todd. I was curious if you were related to a woman who passed away named Jacqueline?”
“My sister from Connecticut - see my photos’-- Todd
“I do not want to be blunt or too straightforward but I recently discovered I had a health issue and was able to find my birth mother’s name, which was Jacqueline from Norwich CT. I hoped to try to find out more about her or maybe how she died in case it would be of help for what I’m going through. Or maybe a contact of someone who would wish or be able to help me. Sorry if this message comes across awkward. Thank you in advance”. (How helpful is Facebook?!?! It saves everything!)
My Uncle Todd jumped into action and by the end of the night my long lost family called me. I heard my Grandmother’s voice for the first time. My older sisters voice. Eventually my little brothers voice. Little did I know that March 20th would start a new bright chapter of my life during a new dark chapter. Today marks a year but it feels so much longer since my new family has stood strongly by my side ever since!
My first few days of processing that I have breast cancer were extremely private. I was NOT open about it. I wanted as much control in the matter as I could. After my diagnosis phone call, which was brief and direct, I was shocked, devastated and unsure how to feel. I of course cried a lot! So did Martin! After my phone call telling me I had breast cancer we finally pulled into our driveway. I knew I needed to call someone ASAP, so I called my busy mom.
My step father answered and told me my mom was busy, which is normal -- my mother is a workaholic. I heard my mother in the background say, “Is it an emergency."
"Yes!!!” I said
“Emergency like someone is dying emergency?” she said.
“YES I’M F*&^%*KING DYING!!!” I screamed and finally broke down.
My mom hung up and rushed over. Then I called my best friend Bonnie, “Hi....” Bonnie, who knew I had the biopsy, heard the fear in my voice. Before I could say the words she was in the car and on her way over. At this point the words I HAVE BREAST CANCER had not passed my lips. When my mother and Bonnie arrived the first thing we did was call back Jefferson Radiology and my gynecologist to have someone explain the news again, but this time with several ears listening. My other best friend Marcy was going through her own journey with breast cancer. My mind was racing so I thought I would call her and hypothetically tell her a story of “someone” who just found out she had cancer.
After talking to Jefferson Radiology and my gynecologist I absolutely needed a drink. March 9th of last year was an oddly warm March day. Actually it was in the 60’s, typical New England unstable weather. Martin and Bonnie took me to Bill’s Seafood in West Brook. We sat on the deck near the water. I looked at the ducks in the water and the seagulls desperately trying to get food. I remember hearing the cars driving over the old metal bridge. I looked at my vodka soda and said “this might be the best drink of my life.”
When Martin and I got home, we sat down and whipped out our phones and the research began!
In January 2016 I called my doctor and explained that I felt a lump in my breast. They said it was normal for young women my age to have lumpy breasts and said I should wait until my menstrual cycle finished. If the lump was still there, then they would have me come in to see a doctor. After my period came and went, the lump was still there. Not only was it still there, it burned and moved around in my breast. The doctors -- and most information I found on the Internet -- claimed that tumors are hard, solid masses that do not move around, so it was probably nothing. My regular doctor was not in, but they said I could see another doctor. That doctor proceeded to feel my breasts, and said if she could put money on it, the lump was probably nothing and not to worry. When she saw that I was not convinced, she asked, “Would it make you feel better to get an ultrasound?” I said “Yessssss,” of course I would feel better if I had an ultrasound. She explained that protocol is to get a mammogram first, then an ultrasound, but since it was probably NOTHING, I should just refuse the mammogram and insist on getting the ultrasound. I did just that.
That was my first experience with Jefferson Radiology, where you can get CAT scans, MRIs and other types of imaging needs. Sure enough, the technicians at Jefferson Radiology did just like the doctor said and insisted on a mammogram first. I refused, and we proceeded to the ultrasound. And yet, the idea of breast cancer was far from my mind. The nurse who walked me to the changing room saw I was nervous, which isn’t unusual in that situation. She told me, “You have a strong energy, and you will be strong.” I didn’t understand that she was trying to comfort me because I might be facing a cancer diagnosis, so I shrugged it off. I went into the room, laid down on the table, the woman applied cold gel to my boob and started to check out my lump. And I heard the words again: “It looks like nothing suspicious, BUT protocol says they need to do a biopsy, but don’t worry it’s probably benign.”
My very good friend Bonnie volunteered to take me to the biopsy, which they said would not hurt. (It hurt, oh yes, it 100% hurt.) Three days passed and my fiancé and I were in the car on a sunny and unusually warm Wednesday in March. Someone from Jefferson Radiology was calling.
“Yes, that’s me.”
“I’m sorry to inform you your results say it is in fact breast cancer. You should find a good surgeon immediately and book a PET scan. Sorry to inform you, best of luck.”
I’m not joking. It was that blunt. I will never forget what he said, and how straightforward he was. I won’t ever forget sinking into the passenger seat and bursting into tears. The man from Jefferson might have said a few other things, but at that point I couldn’t hear or process anything else. Just BREAST CANCER. I looked to my left and Martin was crying. And that was the beginning of this journey.
January 6th, 2017 an remarkable young woman named Brandi passed away from metastatic breast cancer at the age of 32. Brandi and I never had the opportunity to meet but the more I learn about her, the more her story inspires me. Brandi & I have similar outlooks on life. Our journey with MBC is similar too. We both had to deal with liver and bone metastases at a young age. So similar that we both had metastases in our right hip and experienced the unfortunate pains of MBC. We both don’t have kids. But we both have a loving and strong support system.
I have been fortunate to learn about Brandi’s life and what she dealt with from her boyfriend Mike and her mother. During their time of grief they thought of others, not just anyone but a total stranger, ME. Women like us can thrive for years, we can look healthy, some of us can grow our hair back pending on which treatments we are on. You see us travel and celebrate our lives, because when a diagnosis of metastatic breast cancer hits your life you are faced with some big decisions. This is where Brandi and I share so much in common. Brandi and her boyfriend traveled, laughed and had fun. I told him how I loved the slide show at her celebration of life which was held in her home town East Hampton, CT. It was a picture of the two of them kayaking on a beautiful lake. I mentioned how I would love to do that but not sure if I would have the strength and how strong she looked. Even me, someone battling the same fight can’t see her illness. She had a beautiful smile and just seeing her photos her energy radiated from the slides. He said, “she didn’t paddle I did for her.” And at that moment it hit home because it would be the same for me.
After talking to Mike, I felt justified that spending whatever extra money we have to see the world, make memories and live the remaining time to the fullest. Mike also (probably without knowing) gave me so much comfort sharing the details of Brandi’s last days and months. Yes, their are stories of us who die suddenly, but after hearing Brandi’s story and a few others recently it can go like this. Some of us find treatments early on that their bodies respond to keeping us stable. While some of our worst nightmares come true and our bodies do not respond to available treatments. Even when we do respond to treatments, no one knows when or how soon they will continue to work. When a treatment fails you are back at the starting point. After treatments start to fail then it can escalate quickly, so you want to hit your bucket list before you don’t have the strength.
Brandi didn’t think of herself when the end came near. She wanted to pay it forward to someone facing what she went through. Brandi and Mike searched for someone similar to her and found me and my supportive oncology nurses singing to Mariah Carey. And decided together that when she passed that in lieu of flowers donations to go to me.
When Brandi passed, my go-fund me (which has been relatively quiet) started to ding and ding. I didn’t understand what was going on. Comments saying in memory of Mother Wolf. I was thinking did they donate to the wrong person?!?! Soon I started to do some research and I realized what was going on. I immediately went to my under 40 metastatic breast cancer thrivers group asking if people knew who she was. (Our private under 40 group consists of about 2,000 woman, we are a small community and we all stay on top of each other so usually when someone turns for the worse we know) Brandi didn’t participate in this group so none of us knew. Finally, when I found her obituary I started to cry hysterically. This is a beautiful but sad thing to process. She thought of others until the end. She did not lose her battle to cancer. It is a completely unfair fight. She won her fight with cancer, she’s now pain free, she left a mark on people’s hearts which was apparent at her celebration of life, and she left a mark on my heart.
Brandi i’m not to far behind you and thank you for letting me feel what you made me feel. Your act of kindness will not be forgotten because when its my turn to say peace out to cancer, i’ll ask for the same but in memory of us.
Many people expressed to Mike wishing to purchase Brandi’s celebration of life t-shirts. (The photo below) If you wish to buy a t-shirt in memory of her the link is: http://venmo.com/Mike-Bair (there is a button below the shirt). They have not stopped thinking of others. The t-shirts are @20.00 and $15.00 will go to support my journey. Many of us at our age have a small fear of being forgotten after we pass, so buy a shirt to keep her memory alive!
Facebook post from Mike: "Brandi Tree T Available for Purchase! Many people have expressed interest in buying Brandi's Celebration of Life t-shirt's. If you want one or many, please send me an email (firstname.lastname@example.org) with the subject line "Brandi Tree" and include your size (please note, women's t's seem to run smaller, so if you're a size small, elect for a medium), delivery address, and your preferred payment avenue (check or Venmo: http://venmo.com/Mike-Bair). The shirts are $20 and $15 will go to support Larissa Podermanski, see her story: https://www.gofundme.com/7bzm8479 . Please submit your order by end of day on 3/10/17. Share and spread the word!! Howl Howl Howl !!!"