I left my family vacation in Colorado to fly home alone for an immediate biopsy.
On his second birthday my baby boy woke up at his grandparent’s house because I was only two days out from surgery.
Even though my neck could hardly hold my head upright, I tried my first bites of food on my daughter’s 7th birthday.
My partner teacher moved into my classroom over the summer as I wouldn't be returning on the first day of school. Instead, it was my first time in public to walk my big boy to his kinder classroom.
By my sons 6th birthday, my girlfriend’s helped me prepare for his day. They baked a cake, cleaned the house, decorated, and brought food. I did a lot of sitting.
The weekend of the Boss Mom Retreat in San Diego, a weekend I had planned for 9 months, was spent recovering from chemo.
The Lighthouse Academy came and went as I prepared for chemo #2.
During the PLIDA conference (where my book sold out at the bookstore even without me there) I had excruciating radiation burns my mouth.
I watched two adorable Power Rangers head to Grammie and Grandpas Halloween party as I slept the entire time they were gone.
Reid had two soccer games this weekend but I had to save my energy for the drive to Kaiser for chemo labs.
I have missed so many things I had planned, looked forward to and wanted to be part of. I have cried when the house became empty after the boys left and I was alone.
The daily pain is indescribable and has been left unsaid because it’s personal and I need to focus on rest and recovering not complaining about something I cannot change.
So I rest. And I recover. And I remind myself that the best-laid plans are the ones that life laughs at and that all of this is temporary.
Tomorrow I have my final chemo. FINAL. As in, I am almost done. A few more days of life put on hold before my body can start the healing process.
There will be more days of missed events, of days that I wish I could be part of, but in the grand scheme of being alive, these small sacrifices are worth it. There will be more retreats and conferences and soccer games and Halloween parties.
Because I put life on hold now, there will be more life to live and THAT makes it all worth it.
I am sad to have missed these moments, but there are so many more moments left to live for and because I am CURING this cancer, I will be here to experience them.
One FINAL chemo. Warrior on.
Invisible beams of waves that eradicate cells, both good and bad.
I rely on this technology to save my life. As the machine moves around my head I close my eyes and imagine a white light and soft hands rested upon my neck, healing it with love.
There’s a beep that begins the moment that the machine starts to work. It’s loud and obnoxious and oddly soothing. It’s so loud that the music playing in the background gets masked which can sometimes be a blessing depending on the song of the day.
My head and shoulders sit inside a green mask that is bolted to the table. My left hand holds a large ring to keep my shoulders comfortably in place. In my right hand I hold a special rock, it’s painted with my three children against a night sky. It fits perfectly in the palm of my hand and is a constant reminder why I endure this painful treatment. Most times I keep my eyes closed to meditate but sometimes I open them and watch the machine circle around my head. I can see my reflection in the glass screen and where the green laser lines set against the mask and my skin.
Above the machine in the ceiling of the room, they have replaced the light covers with a scene of a blue sky with clouds and cherry blossom branches. It’s interesting because it’s near identical to the original theme for Our Only Time. It gives me comfort to look at that view.
And just in time to complete one or two songs, another beep is heard and the machine slowly moves back to its original position. I can hear my team walking back in the room, they usually tell me “nice job” so I know they’re there beside me, because I can’t turn my head and look. I like to give them a thumbs up, letting them know I’m ok. They unbolt my mask and remind me not to move as I’m about 4 feet in the air. The table gets lowered, they help me sit up and I stop to catch my breath before stepping to the ground
Physically, I feel the same leaving radiation as I do walking in. But most days walking in, I have an enormous burn on my tongue or on the inside of my cheek or the back of my throat. Not to mention the condition of my entire neck skin which is red, thick and already peeling. But, I’ve already started my day with pain meds, anti-nausea, antacid and laxatives-gotta keep things moving! So when I get off that table, my heart is racing upwards of 130 bpm. (I know this because they take my vitals daily.) And even though I won’t immediately feel different, my brain knows what I just did, and it sets my anxiety through the roof. I breathe through it and by the time I arrive at my second appt for the day, I’m usually calm again.
About 5-6 hours after radiation, I can usually tell where I’ve been burned the most. Today, it’s my tongue, the roof of my mouth and my cheek near my top molars. That should make eating interesting. Two days ago I went back to a liquid diet because the burn sores prevented me from chewing comfortably. I hate a liquid diet. My salivary glands have been affected from radiation and my mouth is now a constant combination of dry, mucousy saliva. It’s nasty. So add in a thick shake and my gag reflex is continuously ready to go. Oftentimes in the morning, I’m racing to rinse my mouth before I vomit upon waking.
But TODAY, today I completed my 30th and FINAL radiation treatment and I can finally look towards the next few weeks. But before I get too excited I have learned that radiation is like a microwave that keeps cooking once the timer has beeped. You know those directions that say, “let food sit before consuming” that’s because it’s still cooking. And for the next few weeks, I’m still cooking. So my throat, my mouth and neck will continue to feel the effects of the radiation doing it’s job-killing both good and bad cells. I don’t know what to expect from my body in particular, but they did tell me what NOT to expect.
“Don’t expect to wake up and feel better. The height of the pain will come this weekend and should plateau for about 2-3 weeks. Then, you will start healing.”
So I wait. First I wait until Monday for my final round of chemo. Then I’ll wait for the 5-6 days that chemo wreaks havoc on my body. Then another week or two for the healing process to begin. It’s ok. I’m used to waiting by now.
It’s been a LONG road so far. Months, really. But we’re nearing the third leg of the race; healing and recovery. I’m so close I can taste it-well, I could taste it if radiation hadn’t seared my taste buds!! But I can ALMOST taste it!!
And along this road, I’m so grateful for you. You, who read what I write for the better understanding of what my daily experience is. You, who want to be informed so you can support me. You, who love me every step of the way. You, who sent me love, well wishes, a surprises on this final day of treatment-knowing what an enormous day today is. I am SO grateful for you. Your encouragement gives me the strength to get through each obstacle to healing. One step at a time.
Today, I’m done with radiation!!!!
This the 7th year that I knew a night such as this existed. You know, before you’re thrust into the world where babies die, you don’t even know this as a possible reality. One day you’re living your life naive, free, expecting a baby and the next you’re headfirst into a devastating nightmare living without your child.
The first October without Ruthie Lou we escaped reality. We left in our trailer and drove down the California coastline, far enough away that we could be anonymous to search for who we were now that our baby had died without the pressure of those who knew us watching.
On October 15th I learned of the International Wave of Light. On this night for one hour in every time zone across the world, a candle is lit in remembrance of a much loved and missed baby. In 2011, my husband and I sat at a picnic table in a campground outside our trailer with our very best friends and lit our candle for Ruthie Lou. We watched it in the moonlight and honored the life that she lived, too short but so full of love. It was terrible and beautiful and so lonely.
Tonight, 7 years later I await impatiently for the 7pm hour to share my candle with the world, to share her light and my love for our daughter that beats as strongly as the day she was born.
It is still terrible and beautiful without Ruthie Lou, but it is no longer lonely. In the last 7 years there has been a shift in awareness regarding Pregnancy, Infant and Child Loss that didn’t exist before. There are numerous resources, books, support groups, articles and friends that continually support one another.
As I sit here scrolling through social media I see so many names of babies I never met but love so deeply. I see camaraderie and support amongst bereaved moms and dads that may have only met online but are united in their loss and love for their babies. The real-life relationships and bonds that have held us through moments of sadness and moments of celebration of our babies is beautiful. It is amazing. It is what I was searching for 7 years ago. I wanted to feel normal in a world that was unrecognizable to me and here are, we are making tremendous strides supporting one another.
So tonight, I honor all the families missing their baby(ies) and I send immeasurable amounts of love. We are doing beautifully to honor our children and I know they are as much proud of us as we are of them. Their light continues to shine so bright as we remember them tonight and every single night.
I am mama of three beautiful babes; two sons whom I have the privilege of raising and my daughter who lived for 33 sacred days.