April 27 stands out in my memory probably more than March 9. The news I learned on March 9th was very devastating, don’t get me wrong, but April 27th was when I heard the words “non-curable.” It was the day I sat in the hospital hoping for good news, but had to process what Stage 4 cancer meant instead. I was numb for most of the day, but I did get homemade perogies, which distracted me greatly.
April 27 closed the chapter of having merely Stage 2 breast cancer. It was the end of my hopes that dealing with breast cancer would be only a phase of my life. Before April 27th, Stage 4 was so far away from my mind, I was not prepared to hear those words.
Twenty days before April 27, I had a double mastectomy. Recovering from a double mastectomy takes time and is a very painful process. But I wasn't aware that some of my pain was caused by my spreading breast cancer. During my recovery I was stuck in bed, which is normal. Moving around was painful and they pump you full of medication. At first I thought it was normal discomfort, normal pain, and this was all part of the cancer rollercoaster.
On April 27th I wobbled down the stairs, looking for my fiancé. Instead I ran into my soon-to-be- husband’s mother, who was visiting from Poland. She asked what was wrong and I pointed to my side. She said, “Larissa, that’s your liver.” Moments later, when I went outside to look for my fiancé, a sudden sharp pain hit my chest. I immediately thought I was having a heart attack. Still, I’m thinking, “Maybe I’m doing too much,”and “This is all a part of the rollercoaster.” I called my surgeon, but no luck getting her (she is a very sweet, sweetwoman, but surgeons are busy doing surgeon things lol). I then call my reconstruction surgeon, who was also not available. I don’t even bother calling my oncologist. My first oncologist couldn’t have cared less about me. Finally, my reconstruction surgeon called back and urged me to go straight to the ER to rule out blood clots.
The sharp pains in my chest and side intensified, and my upper right back/shoulder ached and ached. Still, I thought it was all normal. We arrived in the ER and waited… waited… good thing it wasn’t a heart attack or I would have died waiting. Finally, they escorted us to a room and I explained my symptoms. They asked who my oncologist was and I told them, but said I was in the process of switching doctors. Andthat I actually had an appointment to meet the new oncologist that day in Wethersfield, which I was currently missing. The really nice ER doctor called my hopefully new oncologist who had yet to meet me. (Meanwhile I see my old oncologist in the hallway doing everything in her power to ignore me.)
An hour or so later a woman walks into my room and introduces herself as Dr. DeFusco. My new oncologist! I’m delighted. She came to the hospital to meet me! She explained that this wasn’t usually how initial meetings went, but she jumped into action and ordered me a full-body CT scan. (Which, up to that point, had not yet been done.)
CT scans at the hospital go very quickly; in and out. She explained to me there were several spots on my liver, but no blood clot. I didn’t think cancer. Despite all the breast cancer awareness “pink” ribbon efforts, they don’t tell you that breast cancer can spread to other organs. Dr. DeFusco explained that they were going to have to biopsy my liver to see if the spots were cancerous. I looked at her funny, and thought what are the odds it’s cancer? It’s probably benign.
They moved me upstairs to a more comfortable room. At this point I knew I was staying over for a night or two. When the biopsy results came back, Dr. DeFusco was still there. She didn’t make me wait hours or days to tell me the news. She's truly a remarkable person. She gently explained that I had a non-curable type of breast cancer called metastatic breast cancer. I remember like yesterday staring at her, confused, but she made me feel OK, told me it didn’t mean I was going to die tomorrow. She compared it to diabetes -- it’s not curable, but treatable.
My fiancé, my mother and I were all in disbelief. My mom asked me what I wanted to do. I looked at Martin and said “I just want to marry you.” And very quietly, I added, “… andsome of your mom’s perogies.” (I’m notorious for eating my emotions.)
Everyone jumped into action. I got my homemade perogies and we started planning our wedding, which we moved up from Oct. 8 to May 7.
So when people ask when I learned I had breast cancer, I almost ALWAYS reply that it was on April 27th. March 9th started my journey, but April 27th changed my whole outlook on life. So today is my one-year anniversary of my metastatic breast cancer. One year of truly viewing each breath of life as a gift, and a day I will never forget! I was never a huggy or physically affectionate person, or someone who took time out of her busy life to watch butterflies. But that all changed on April 27th. Now I’m thankful for each moment and grateful for all the generosity and love that surrounds me each and every day!
See my last day of chemo (well at least for awhile!) See chemo through my eyes while learning everything you probably never wanted to know & my last day of chemo celebration!
Today’s guest blogger is Bonnie Phillips, my good friend and maid of honor and dedicated dog-sitter.
Pro tip: Do not attempt to drive to the Dana Farber Cancer Institute in Boston on a day when both the Boston Marathon is happening and the Red Sox are playing.
Now, those of you who live in New England are saying, “Well, yeah. Duh.” But in our defense, Larissa had broached the subject with the nice folks at Dana Farber and was told that we’d have no problem getting there. And appointments at the prominent cancer treatment center are hard to come by. So off we went Monday morning, excited and looking forward to learning about possible new treatments for the Stage IV breast cancer Larissa has been battling for a year.
Getting to Boston was no problem. Traffic was light because of the Massachusetts holiday, and we made it into the city easily. The trouble began when we got off the highway.
Suffice it to say that, as the old-time New Englanders say, “You can’t get theah from heah.” We only needed to travel about four blocks to get to Dana Farber – but we needed to cross Commonwealth Avenue, which was closed for the marathon. And Commonwealth Ave is a very, very long street.
After running into about our third roadblock, Larissa asked a police officer for directions. The officer, from Quincy, Mass., was more than helpful. “Turn left heah, then cross over the pahk and bang a right.” (An especially nice touch was the shamrock sticker he had on the grip of his handgun. I swear to God.)
About six more roadblocks later, we asked another cop, this one a Boston officer. Got different directions, and off we went. Same thing – more roadblocks. Asked another Boston cop – more different directions. Off we go. Same result.
Finally, desperate, Larissa’s husband Martin (who had not one but THREE backseat drivers yelling directions at him while each was looking at completely different routes on their phones) asked a cab driver stopped next to us at a red light how to get to Dana Farber. God bless the man – he had an empty cab, so he led us to Storrow Drive and told us how to get theah from heah.
Finally, we made it. More than an hour late for Larissa’s appointment, but we made it.
I have been honored and blessed to be by Larissa’s side during her cancer journey. From the day she learned the earth-shattering news that she had breast cancer, to learning the disease had spread to her liver and bones, I’ve watched this incredibly brave woman fight for her life. If you know Larissa, you know she doesn’t lack for self-confidence. She’s strong.
But she’s had to learn a whole new language over the past year. Hormone therapy, chemo, immunotherapy, holistic therapies, Taxol, Lupron, double mastectomies, early menopause – these are subjects those of us without cancer are lucky enough not to have to think about. I’ve watched Larissa go from a woman who literally couldn’t say the words “breast cancer” to a woman who can go head-to-head with a cancer doctor from Dana Farber on possible hormone therapy and which drugs have the best reputation or the most likely chances of success. I was so proud of my girl when the Dana Farber doctor said “You’re very knowledgeable about these treatments.”
We got a lot of good news at Dana Farber. We learned that Larissa’s agonizing decision to undergo chemo instead of trying hormone therapy worked. Her cancer is “stable.” When you’re Stage IV, that’s excellent news. We also learned that now is a good time for her to go off chemo and try hormone therapy – just in time for summer. So she can stop the weekly chemo infusions and the accompanying nausea, exhaustion, hair loss, “chemo brain,” body pains, etc.
The next stage of her journey will bring different challenges. The hormone therapy won’t be without side effects. She’ll have to be closely monitored to make sure the treatment is working. There’s always the chance that it won’t – and she’ll have to go back to chemo.
But I have no doubt that Larissa will face everything head on. This is a woman who was in the midst of starting her own non-profit organization to help people with disabilities when she learned she had cancer. A lot of women would have given up upon learning such news. Not Larissa – she has made that non-profit grow. She has such a cheerful, positive outlook that everyone – from her oncologist to the nurses at the chemo infusion center— can’t resist smiling when she walks in the room.
I’m so proud to call her my friend. I’m even more proud that she calls me her friend.
The past few weeks have been a struggle and definitely relates to the post ‘My body is as Moody as New England’. March 30th I left to visit my dad in Lake Worth Florida. My husband and I try to get away as much as possible and after we parked in JFK I remembered why. The future is unclear and creating memories while we can is our upmost priority.
We parked near where we parked last June when we flew to visit Martin’s mother in Poland. We parked in long term parking at JFK and we got a great spot closest to the train that transports you to the terminal. I could barely make it to the train and surprisingly I had the similar struggle this time but not as excruciating.
When we arrived at my fathers I had tightness in my hip but I didn’t let it stop me from taking a casual walk to the water. At this point it was on and off. Moments of extreme discomfort and times where it was manageable. (If you didn’t read my other post you would have read that I grew up as a gymnast so my pain tolerance is very high) During one of my manageable moments I decided maybe some aquatic therapy would help. I am trained in aquatic therapy after all! Nope it made it worse!
After returning home, my hip escalated. Then one morning I woke up and it was manageable and ok again. Two days later my left arm blew up like a balloon. Since my double mastectomy I've been lucky to have not had any issue on my left side of my body. Majority of my issues are on my right side like my liver, hip and collarbone. Stubborn me finally calls the doctor,
‘Hey its me Larissa, its probably nothing but figured i’d leave a message telling you that my left arm where my lymph nodes were removed is swollen and getting bigger. Its probably nothing but here is my number...’
Moments later the doctor’s nurse called me back saying, ‘you have to come in immediately’. This week was my week off from chemo. Weeks off chemo are my cancer free weeks. Cancer doesn’t follow anyones rules, especially not mine. The nurse practitioner looks me over and sends me off for a ultrasound to rule out blood clots. Back to Jefferson I go, now i’m a regular at many places by this point and this usually doesn’t bother me. Jefferson Radiology though is not my most favorite place to go. Its always a challenge for them to figure out who I am when I check in, on-top of my already growing scanxiety.
Turns out I have lymphedema in my left arm.
Lymphedema, also known as lymphoedema and lymphatic edema, is a condition of localized fluid retention and tissue swelling caused by a compromised lymphatic system, which normally returns interstitial fluid to the thoracic duct, then the bloodstream. The condition can be inherited or can be caused by a birth defect, though it is frequently caused by cancer treatments and by parasitic infections. Though incurable and progressive, a number of treatments can ameliorate symptoms. (Wikipedia)
So now back to physical therapy I go, which we hope will get my arm back to normal. At this point my hip is still behaving but now i’m sick. I have not been sick since my treatments had begun. My eyes and nose are running, breathing is a challenge and maybe i’m having fevers. Seriously, when you have hot flashes a few times each hour how would anyone no the difference between fever or hot flash. But now that my sickness has escalate. Its Friday evening on Good Friday, I'm not going to get ahold of anyone until Monday and Monday my adventure to see Dana Farber happens (which needs to happen i’ll post about my trip next week). I hope its allergies, I don’t usually get allergies but chemo you lose hair in most places you might want to keep hair like my head, nose and eye brows but don’t worry you keep every strand of hair on your legs. So maybe now that I don’t have nose hairs i’m more susceptible to allergies, or I have the flu thats going around or a cold. A cold and even the flu would never be scary to me before cancer. I would fight through a flu and carry on with my daily responsibilities before. But after 10 months of chemo and an altered immune system its is rather nerve racking.
God I remember this day! One year ago today I had my double mastectomy! I remember waking up nervous like anyone else. But I knew I needed to be positive. At that point I changed my eating around. Exercised religiously. Prepared my body for recovery. I was strong and I actually felt the strongest & healthiest ever in my adult life!
This would be my first trip to Hartford Hospital for my cancer journey. It was really busy in the check-in room and I didn’t know what to expect. The nurses who helped prep me said that I was really calm for having surgery... I was scared out of my mind but I repetitively repeated my affirmations:
Then I would visualize the words 'cancer' on a flower and blow it away. 'I will wake up cancer free’.
I had downloaded weeks before ‘Cancer: Discovering Your Healing Power’ by Louise Hay. When I started to feel myself drown in fear I put my headphones on and listened. During College I had to read a self help book for a class. I hate reading! So while I was at the book store looking for a book to meet the requirements I stumbled upon ‘You Can Do It’ by Louise Hay. It was a small, short book and I thought perfect it even comes with a CD so I don’t even have to read it. This short book changed my life then and has supported me emotionally through cancer too. Louise Hay is a cancer survivor herself and she still gives me hope. I listened to ‘Cancer’ before and after my double mastectomy. I remember waking up in my room in so much pain, I turned her on and got up from my bed. It can take some woman over a 1 day to rise from bed because the pain knocks the wind out of you, but like Louise Hay says; I Can Do It! I was a told I would spend 1-3 nights in the hospital or until I could walk down the hallway. I was so driven to leave I left the following morning. I was in the hospital for 24 hours and the doctors said it was contributed to my physical strength. If your preparing for a big surgery like a double mastectomy prep your upper back and leg muscles you will depend on them!
That day in the hospital I believed I would walk in with cancer and leave cancer free. I mean I spend hours on the elliptical weeks leading up envisioning the doctors sitting me down to tell me, ‘Larissa we have wonderful news for you, your cancer free’. That day didn’t come as many of your probably know, but I still believe in affirmations and the universe. Things don’t always happen like you plan but the good you attract can still shine into your life in different ways.
I cannot believe its April 7th and I can’t believe I'm approaching April 27th which will mark 1 year since my metastatic breast cancer diagnosis. I guess you can say April is a sad month or I could say its the month that woke me up!