4 1/2 Year Update: Reflections & the Arrival of Granite James!
Updated: Jan 8
Wow — I can’t believe it’s 2020! Where does the time go? It’s funny how time can move so quickly or so slowly, depending on what you need it to do (always doing the opposite of what you need, of course).
Next month Matt and I will be celebrating our 5-year anniversary. We planned for this day since before we got married (and even arranged a fun surprise for ourselves for this momentous occasion. More to come on that soon...)
Yes, we were those people that planned 5 years ahead. I had a (secret) Pinterest board called “Bump! Fashionably” where I began planning my maternity outfits the second I got engaged, and I began planning my 5 year wedding anniversary before we even said “I do.”
That was me. Thinking life was in any way paying attention to my lofty plans and following the simple rules I set out for it.
Needless to say, when we were planning this surprise 5 years ago, we had NO IDEA everything that would happen between our wedding day and this “wooden” anniversary.
(Side note: I just learned that the traditional 5-year anniversary gift is wood (I thought it was paper), which is great because I have a husband to happens to be a great woodworker! (I had no idea until about a year ago!) Check out this built-in dresser he made me before the baby was born, or this beautiful changing table, or these awesome shelves for our kitchen.)
So anyway, I’m a pretty big planner and had planned out our wedding (including a week’s worth of events for our guests who flew in from overseas), our honeymoon, our future family plans, my career plans, and, of course, how we’d spend our 5-year anniversary. ;-)
I had no idea when we left New Zealand in the middle of that Southern Hemisphere winter nearly 5 years ago just how we’d end up spending our honeymoon. We had tickets from New Zealand to LA, LA to Coeur d’Alene, Coeur d’Alene to Orange County, then on to NYC, Washington, D.C., and finally back to San Diego to lay on the beach and soak up the sun (with each of these stops planned around family and friends we wanted to see along the way). Our original itinerary also involved a layover in the Cook Islands, but in the end, we figured that was too much to cram into one trip, and put it off till next year (the islands are just a short flight from New Zealand).
What I hadn’t planned is that we’d be skipping everything on our itinerary except the first stop, and that we’d be traveling by private jet from Coeur d’Alene to San Diego. Okay, sure, it was a medical life-flight, but still.
Life is funny.
It just doesn’t matter how perfectly you plan it, or how hard you work for everything you have, the only thing that’s for certain is that nothing is for certain. The sooner you can learn to accept that, the better prepared you’ll be to handle anything life throws your way. Life had a lot of lessons to teach me over the past 5 years, and I was a challenging student. I resisted. I shouted at life that, “This isn’t fair!” and “Give me back my job! Give me back my life! Give me back my healthy husband!” and “Give this cancer to someone else! Someone who deserves it! Surely there’s a child molestor walking around somewhere without an ailment in his bones! What the F%$#, Universe?!?! Get your SH*T together!!”
But my pleas and demands fell on deaf ears — or ears that weren’t interested in my demands.
So there we were — stuck 7,000 miles away from home, living in hospitals and isolation for over a year, while watching the life, the savings, belongings, health, and happiness — everything that we worked for our entire lives — slowly (or not so slowly) slip away. We’d have to rebuild it all — from scratch — starting with happiness. Our attitude was the only thing we had the power to change, so we had to start there. Everything else was happening to us whether we liked it or not. As Matt said, it was like a train, you’re either on or you’re off. "I could go stir crazy, pout, melt into a lazy puddle of daytime tv, and sleep a year away in a spiral of apathy, OR I can put my energy into getting healthier, being productive, and setting goals for life after cancer. There is no choice. I'm on the train."
That journey led us through some dark places. We traded our harbor-view villa in the city for an isolation unit in the cancer ward. I traded my warm bed in my cozy bedroom in Mount Victoria for a cot in the sterile hospital room, or — when a cot wasn’t available — the cold hospital floor. I traded my successful career as a Corporate Attorney at a multi-billion dollar company for an unpaid position as a full time caregiver, patient advocate, nurse, cook, housekeeper, driver, and my husband’s personal attorney. I spent my nights monitoring his heart and oxygen levels, screaming for help before the machines set off the “code alarms”, and I spent my days fighting a multi-million dollar legal battle with the insurance company to ensure his treatment was covered.
Every day in the hospital cost about $10,000, and the bone marrow transplant he needed was about another $1 million. Every day was a new battle with the insurance company. Every day they tried to find a new way to deny coverage. Every day I had to explain to hospital administrators that we had insurance, and that it would cover the treatment. And then every day I’d have to sit on hold with the insurance company AGAIN as I threatened one person after the next until I finally got to the decision-maker and let them know the doomsday that would ensue if they dared deny coverage for my husband’s treatment. This battle went on for many months, until finally the Head of the Large Claims Division flew in from across the world to negotiate with me in person. That’s a whole ‘nuther story that I’ll write about separately, but spoiler alert: I won. (Takeaway: Don’t f&%$ with a mama bear or a wifey-bear. You’ll lose.)
When we were eventually released from the hospital into outpatient housing, I had to become my husband’s personal chef, as he wasn’t allowed to eat any meals that had been prepared by a stranger — he had no immune system and any germs or bacteria transmitted through food could kill him (no pressure!). I had ZERO cooking skills (Matt had always been the cook in our relationship). I didn’t know what to make, where to begin, or how to make it. The first day home from the hospital (“home” being our outpatient housing since our real home was 7,000 miles away in New Zealand), I tried to make chicken and dumplings — a recipe that my mom had given me. It was pretty basic, and she was confident I could do it without a hitch.
Wrong! I burned the entire thing.
I’m not even sure how I managed this, to be honest. How does one burn dumplings? It’s like I had a special power in the kitchen: Everything I touched, turned to coal.
So there I was — feeling helpless and hopeless and trying to stay positive in a world filled with bad news and burned food. I literally had my husband’s life in my hands every day as I struggled to learn new skills, fight new legal battles, and earn a condensed medical degree in Acute Myeloid Leukemia while operating on very little sleep and very high stress. (So, basically, I was just another medical student. Ha.) And somehow I had to maintain a semblance of sanity in the process.
It was challenging, but I knew I had to keep going. Every day was a fight, but Matt and I fought it together — each with our own unique positions in the battle line-up.
I’d be lying if I said we could see the light at the end of the tunnel. We couldn’t. We couldn’t see past our toes, and we didn’t dare look up lest we catch a glimpse of the mountains ahead of us. We didn’t need to see the mountains. We just needed to keep putting one foot in front of the other — not thinking about tomorrow, or next week, or an hour from now — just knowing that if we continued moving one foot and then the other, no matter how small the steps, we could make it.
And we did.
So here we are, about to celebrate our 5-year anniversary, and I can’t believe how far we’ve come. (See how we celebrated our 1st wedding anniversary in this short video.) Last year, on the anniversary of Matt’s diagnosis, we found out (against all odds!) that the fertility treatments had worked, and we were expecting a baby! (More about our fertility struggle here -- beginning at 1:30 of the video.)
Granite James Fontanesi arrived on May 1, 2019 — weighing in at 8 1/2 lbs! He was happy, healthy, and had the strength of his Dad and the willpower of his Mom from birth (God help us all…!).
More to come on motherhood, fatherhood, the challenges of pregnancy and childbirth, and what it took to get here, but suffice it to say, regardless of all the challenges we faced, Granite is the best, most amazing thing in the world, and our souls couldn’t be happier!
Dani & Matt