I can't believe it's been over a week since my last update. I feel like it was just days ago that I was writing my last blog post, but so much has happened in the past week.
Last Saturday night we had a major break-through. We experienced something that we hadn't experienced in over 4 weeks: Matt made it through the night without fevers!
There were no ice packs. There was no frantic scramble for Tylenol IV. There were no nurses looking terrified as his fevers soared. There was no pit in my stomach as I watched his face swell and his body shake. There was nothing. There was just sleep and the occasional blood labs and vitals checks throughout the night.
In the world of Acute Myeloid Leukemia, we had a very peaceful night.
It was confusing. We didn't know what to make of it. We had spent the last four weeks living in a world of fight or flight. We wouldn't fall asleep each night, we would pass out from exhaustion. And each evening after dinner, we would mentally brace ourselves for the night ahead.
Sleep would come in spurts of about two hours at a time, and 2:30am was usually when his fevers began to spike...103, 104, 105... Any sleep we could get before then was a blessing. And these little bits of sleep were necessary to provide us with the energy and strength to battle the night ahead.
I got really good at falling into a deep sleep almost instantly, and waking up from it just as quickly when the life machines started beeping or when Matt said my name. The human body is a remarkable thing. One thing I've learned through this experience is that your body will adapt to fit your needs. It may take some time, but it will do what it can to help you out. Most of the time, your body is on your side -- you just need to figure out how to work as a team.
Of course, there are other times when your body is an asshole and decides to take perfectly good cells and turn them into cancer. In these times your body is not on your team, but when that happens, there are wonderful ways to punish your body for being a dick. Like chemo. There's pretty much no better form of body punishment. It's like the internal equivalent of a good flogging.
But Sunday night there were no fevers.
I still woke up every couple hours on cue to check his temperature, but I was confused when it never rose above 100 degrees. I would double check it with another thermometer to make sure. (I had learned that when his fevers rose above 104 degrees, one of the hospital thermometers would stop working and refuse to register a temperature.) I also had my own thermometer (courtesy of the ICU at the previous hospital), and I checked his temperature with that one too -- just to make triple sure.
NO FEVERS!!!
All my dreams and hopes and wishes had finally come true!!! (Well, aside from getting rid of the stupid cancer, but we'd cross that bridge next.)
It was Sunday and my one wish for the week (I try not to be too greedy) was that he would be stable enough to leave the hospital by his birthday. His white blood cells ("WBCs") were expected to return this week following the chemo, and if his WBC counts were high enough, and if he finally got the fevers under control, his doctor promised me we could celebrate his birthday outside the hospital.
I was determined to make that happen. (Matt claims that I wished it into existence.)
When his doctor came in that morning, I was all smiles. I pointed to the board where, under "Discharge Orders", I had written "Get discharged by birthday!" I reminded the doctors of this goal everyday, but they would not make any promises. Still, I continued reminding them.
(I also posted photos of us everywhere in the hospital room to remind us of our lives outside those four walls, and to remind the doctors that he's a person, not just a patient, and to encourage them to help get us back to our real life as soon as possible.)
That day, the doctor smiled back at me. "No fevers," she said. It was more of a question than a statement, to which I responded (in an excited, near-shout), "NO FEVERS!!!"
Usually I have half a dozen questions written down for the doctors that I want to discuss before we review his latest blood work results -- WBCs, neutrofills (ANCs), platelet levels, hemoglobin, etc. But today I just had one question: "Can we get released by his birthday??"
Her response floored me: "You may be able to get released tomorrow!"
There were fireworks and celebrations going off inside my body!
His ANCs (a measure of his WBCs) had to get above 1,000 before they would let us leave our isolation unit and head into the world of fresh air and other human beings, but his ANC counts had already risen from 0 to 700 in the past 4 days. (WBCs are what your body needs to fight off viruses/disease/infection/etc, and for the past 4 weeks, his ANCs had been 0.)
Monday morning his ANCs were 900. We were so close!
By Monday afternoon, his ANCs had risen above 1,000.
I got my wish!!! We FINALLY got to leave the hospital!!!
This was both thrilling and terrifying. We had spent 28 of the last 30 days between isolation units and ICUs. We had lived in 9 different hospital rooms and only traveled by ambulances and medical flights. Our life for the past month had been a constant battle for survival where Matt wore heart and oxygen monitors, a blood pressure monitor, and had an assortment of IV bags hanging above him like a mobile in a crib (I think that's what it's called!). I would wake up to the sound of machines beeping as his oxygen levels dropped or his heart rate soared (usually indicating a dangerously high fever).
I had nurses and doctors at my disposal every second of the day. I had a red cord I could pull in an emergency. We had walkers and wheelchairs and bedside commodes. We had physical therapists and pulmonologists and infectious diseases specialists and oncologists and an assortment or other medical teams checking in on us.
The thought of being cut lose and set free after a month in this bubble sent shivers of fear up my spine. But I wanted it so badly, I was prepared to face my fears head on.
Even upon release, we weren't sent very far. We were moved to patient and family housing directly across the street from the Emergency Room of the Hillcrest campus and given strict instructions to call 911 or go immediately to ER if his fevers rose above 100.5 degrees.
Although it was terrifying leaving our bubble, we've been here for 5 days now and tomorrow will mark the one week anniversary of being fever free! I can't even begin to tell you how good it feels.
Although they keep us on a short leash at Moore's Cancer Center, with countless hours still spent in outpatient care, the freedom of mobility, of breathing fresh air, and of seeing other human beings living their regular, cancer-free lives is something indescribable beyond words.
On Wednesday, two of our dear friends, Jaime and Dave, who live in Australia, came to visit. (When they found out Matt was sick, they immediately tacked on San Diego to their North and South American travel itinerary that they were finishing up.) It was so wonderful to see them.
On Thursday, Matt's brother and sister-in-law, Chris and Cristina, flew in from Washington, D.C. to surprise Matt for his birthday. They met us at one of his favorite Mexican restaurants in San Diego, and Matt couldn't have been happier or more surprised. We sat outside for lunch and enjoyed some fresh air, a Mexican feast, and great company!
In between blood work and bone marrow biopsies, we've managed to sneak in a couple 30-minute trips to the beach, a few more Mexican restaurants, and some soul-regenerating time with family.
I can't say the outpatient housing is ideal (we can't enjoy a breakfast in the kitchen without hearing a sad story from another patient or family member dealing with cancer or liver transplants or heart transplants or any number of illnesses, which gets rather depressing).
But I will say that words cannot describe the feeling of getting to sleep next to my husband again, of living without a constant fear of what the next moment will bring, of having a reprieve from IVs and life monitors and oxygen tubes, of getting to experience the outdoors with him and being able to do "normal" things like go to a restaurant or sit on the beach or breathe in the outside air.
Watching him re-experience these things for the first time in what seems like an infinity of frozen time has overwhelmed me with emotions that I can't even begin to describe. The first morning that we stepped out of our room and into an outside courtyard, Matt looked at me and said, "It smells so good out here." I asked him what it smelled like and he said, "Flowers."
Of all the things I have to be grateful for right now, my favorite part of the week is still getting to sleep next to my husband each night (even if I can't cuddle with him very well because of his PICC lines).
We've been soaking up every moment of the last 5 days and we have another 6 days before it's back to inpatient treatment at the hospital again. If you don't hear from me before then, it's because I'm busy enjoying these special moments with my husband. :)
xoxo
Dani (#teamfontanesi)