Matt & Dani Fontanesi
Newlyweds navigating life, cancer, and life after cancer.
In 2105, Matt and I were newlyweds living in Wellington, New Zealand. We had just gotten married on Waiheke Island, a beautiful island off the coast of Auckland, and our friends and family had flown in from around the world to celebrate with us. We planned a weeks' worth of events -- from winery tours to beach yoga to bar crawls and seaside brunches to celebrate.
It was a magical week during one of the most magical times of our lives!
On August 21, 2015, Matt and I set off on our honeymoon! We had a fabulous itinerary planned from enjoying the breathtaking beauty of Coeur d'Alene, to attending a friend's fabulous wedding in Orange County, to heading to Broadway shows in NYC, to sightseeing in Washington, D.C., to soaking up the sun in San Diego before heading back home to New Zealand. Each of our stops involved visiting friends and family along the way, and we couldn't wait to get started!
But Matt took a turn for the worst on our trans-Pacific flight from New Zealand to LA, and by the time we arrived in Coeur d'Alene on a Friday afternoon, he was shattered. He spent three days in bed battling fevers and night sweats, and by Monday morning, I decided it was time to see a doctor.
When we arrived at the ER on Monday afternoon, we expected to be discharged within an hour with doctor’s orders to get some rest, drink some fluids, and wait for the bug to pass. Perhaps they could give him a Z-Pak or some other antibiotic to help move things along. We had places to go and people to see, and we didn’t need the flu dampening our honeymoon!
As we waited for the doctor to return, Matt read a magazine and poked fun at himself for allowing me to take him to ER for what was surely just a bug that would pass in a few days.
But when the doctor returned to our room less than an hour later, he looked ashen and visibly upset, and we wondered what had happened in the room next to ours that had shaken him so badly. He was so happy and jovial earlier.
“Well..I have good news, and I have bad news,” he began.
Okay, we thought. We knew where this was going…the good news would be that it was nothing “serious”, but the bad news would be that Matt had a bad strain of the flu and would probably spend the next week or two in bed rather than going to the Broadway shows and doing all the sightseeing we had planned.
We waited for it…
“The good news is that you don’t have the flu,” he continued.
What? Really?!? This was indeed great news! If Matt didn’t have the flu, then it must be something that could be treated with antibiotics, and he’d be back to feeling good again in a day or two. Awesome!
“So what’s the bad news?” we asked. Did he have to stay in bed for a couple days? Did he need to get more fluids through an IV?
The doctor dropped his head and stared at the floor as he fumbled for his words. We began to think maybe it was a little more serious than we expected. Was it pneumonia? Would he have to spend a day or two in the hospital?
But it wasn’t pneumonia, and we wouldn’t be leaving the hospital in a day or two.
“You have no white blood cells,” he continued.
No white blood cells…what does that mean? I thought.
But Matt (who I call the walking encyclopedia because he knows everything about everything) clearly had more of a clue than I did. He began asking questions that I didn’t understand.
I listened for a minute or two before I finally blurted out, “So what does that mean??” Break it down for me simply, please.
The doctor turned to Matt. “It means you either have a life-threatening disease…” He rattled off a few scary ones…AIDS, Hepatitis, some others I don’t recall… “or you have a blood cancer.”
That word sunk in my stomach like a rock and floated slowly up into my head like a dizzying vapor, filling me with equal parts disbelief and terror.
“Or?” I said. “What are the other options?” I looked at the doctor and waited for his reply. Surely our only options weren’t just “a deadly disease” or “another deadly disease”.
But the doctor just looked at me with sadness in his eyes. He could see more of our future than we could that day, and his heart was visibly breaking for us.
The tears started streaming down my face, and I ran to Matt and threw my arms around him. I squeezed him tightly and willed the doctor’s words to be wrong. Maybe if I could just hold him close enough, I could protect him from those terrible diseases the doctor mentioned.
But I couldn’t. My strength was helpless against our new reality.
We held onto each other and assured each other that everything would be okay, that we would get through this — whatever “this” was. But we had no idea if that was true or not.
A few minutes later, we were moved from ER to an isolation unit in the cancer ward. Matt had no white bloods cells — which meant he had no immune system — so we couldn’t be around other people or risk exposure to any germs. We couldn’t even open a window in our hospital room because any germs or spores that floated in from the outside could kill him.
It was more than we could process.
We couldn’t grasp the magnitude that day of how our lives were about to change, and it’s better that we couldn’t because it would’ve been too overwhelming. We would later find out that his blood was over 90% cancerous, and that if we had not come to the hospital that day, he would have been dead within two weeks. His chances of survival were very slim at that point, but we didn’t know that. We made the decision that we did not want to know any odds or statistics. We only wanted to know treatment options and what we had to do to fight it.
As Matt said from the beginning, “Odds are for other people. I’m 1 of 1.”
We spent the next few weeks in and out of ICU fighting for his life. Our nights were a series of cat naps interrupted by the sounds of his oxygen monitor or heart monitors beeping as his vitals dropped and his fevers soared. At one point, he collapsed in my arms as I helped him to the bathroom. I couldn’t support the weight of his 6’3” frame, and he fell to the floor. I desperately — and unsuccessfully — tried to hold him up before running into the hallway and screaming for help. That would be the first — but not the last — time he coded.
After two and half weeks in a regional hospital in Coeur d’Alene, we were transferred by life flight to a major cancer center in California — UCSD. When we arrived, we were immediately admitted to the Bone Marrow Transplant (BMT) Unit — Matt would need to undergo an incredibly high stakes procedure known as a bone marrow transplant.
The BMT Unit is arguably the “sickest” unit of the hospital, and when we arrived, Matt was the sickest person in the BMT Unit.
It was a sobering time.
We spent the next year of our lives living in hospitals and isolation fighting for his life.
We lost everything we owned in the process except the 3 weeks' worth of clothes we packed for our honeymoon. We would never again see our house, our car, or most of our belongings. I would never return to my desk at work, and Matt would never return to his. Instead, we'd be borrowing cars, clothes, and pillows, living in a hospital, and hoping we'd make it through the night.
The hospital became our home. We slept next to each other -- Matt in his hospital bed, tethered to IVs and packed with ice to try to control his fevers -- and me on a cot or the floor next to his bed, depending on what was available. Our nights were a series of power naps in between fire drills as Matt's fevers would soar, his oxygen levels would drop, or his heart rate would plummet. We slept in a state of panic and constant awareness. In the middle of the night, when we'd finally get a moment of silence, I would sneak out into the hallway to cry where he couldn't hear me.
This was our life.
We began writing this blog as a way to keep family and friends updated. We were too inundated with the realities of everything our new life entailed, that we couldn't keep up with the emails, text messages, and phone calls that were flooding in, so the blog simplified things for us. We didn't have to write multiple emails or worry about accidentally excluding someone from an update. When we’d get a moment — in the middle of the night or early in the morning — we’d write what we could, and our loved ones appreciated it.
Sometimes our posts were more eloquent than others. Sometimes our updates were just, “Matt had 3 blood transfusions today. His platelet count was X, and his ANCs were Y.” And other times, we wrote about the fear and other emotions we felt (both Matt's and mine).
We kept writing, and eventually this blog became more than just providing updates to friends and family — it became a way for us to feel connected to the outside world at a time when we felt very isolated. We connected with people from other cities, states, and countries who had fought — or were fighting — similar battles. It even allowed us to connect with other patients and families in hospital rooms down the hall who were living our same journey.
We documented just about everything here — from our fertility struggles, to the isolating roll of a caregiver, to the fear and other emotions we felt, to the phenomenal power of positive thinking and how we defied the odds and beat the statistics time and time again. This blog (and the HUGE outpouring of support we received from the media and generous readers from all over the world) also allowed us to raise the $80,000 we needed to get us through a year of this battle.
This blog has been our lifeline.
Now we use this blog as a way to document post-cancer life, to share our stories, to share the advice we were given and the things that we learned, and to inspire others who may be going through something similar or dealing with life’s adversities. We use it as a way to shine a spotlight on the often-overlooked reality of a cancer diagnosis — particularly for young adults who often struggle to return to any semblance of a "normal" life after a shattering diagnosis and the continuing impact and limitations it has on "life after cancer".
We talk about losing (and rebuilding) our careers, the challenges of returning to the real world after living in hospitals and isolation for so long, and what it's like to live in isolation (including this video showing a glimpse into our daily life during isolation).
We talk about the side effects of Matt's treatment -- including fluctuating 100 pounds in a year (from losing 30 lbs in 30 days to gaining 50+ lbs from a 9-month stint on high doses of a steroid called prednisone).
We talk about the transplant process, the realities of post-cancer (and post-transplant) life, Matt's humorous take on losing his legendary hair to chemo, and how chemo affected his hair when it returned.
We talk about how we celebrated our 1-year wedding anniversary while living in isolation, how we finally got to resume our honeymoon two years later, finding out we were pregnant on the 3-year anniversary of Matt's diagnosis (against all odds!), welcoming Granite James Fontanesi in May 2019, and everything in between, including this photo documentary of the first year of our journey.
Matt and I may not have had a perfect path to get to where we are today, but the road that brought us here has enriched our lives in ways we could never explain. Each morning we wake up together is a blessing, and every day that we get to enjoy a cup of coffee together, or walk along the beach, and or just breathe in the smell of the outdoors is a priceless gift.
So this blog is our way of saying: Wherever you are, whatever you're going through, just know that you CAN and you WILL get through it. We're right there with you, cheering you on, and believing in you. You're not alone, and you never will be.
Welcome to a community of hope, perseverance, and encouragement.