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!!!!
If you don’t hear much from me, no news is not necessarily good news. And last week was not good.
My radiation oncologist told me not to think about the third round of chemo. He said just focus on the next two weeks of radiation. He’s silly and obviously doesn’t know me very well! Of course I am worried about another round of chemo, but he is right. I should only focus on what is in front of me right now and right now, that is 9 more radiation treatments. SINGLE DIGITS!
I was under the impression that the third round of chemo was on an “as needed” basis. See, my treatment is concurrent meaning that when you have one, you must have the other. I have learned that that is not often the case for many cancer treatments. Typically you have one form of treatment (be it chemo or radiation) and then it is followed by the opposite form. For the type cancer I was diagnosed with, that is not the case. The radiation is the main focus, but for it to excel at its job, chemo primes the cells to receive the radiation.
So, it made sense to me that when radiation was complete, that chemo would be too. But NO, not so much.
Radiation is like a microwave that continues to cook after the timer has beeped. So even though radiation treatments will beep on October 26th, my neck and throat will continue cooking for some time after. Which is why weekends are not my favorite time. Although I do not have appointments on Saturday and SUnday, I can still feel the cumulative effects of the radiation with my raw skin and sore throat and quite honestly, Sunday and Monday mornings are really tender.
Which leads me to...another round of chemo to help that final cooking that the radiation needs to do.
The good news is, it’s not my numbers or blood work that requires a third chemo, it is just the protocol for this type cancer.
But truly, this is super disappointing.
Last week’s chemo KICKED MY BUTT. I don’t look forward to doing it AGAIN.
But, I also don’t ever want a reoccurrence so, there’s that.
Entering into chemo is like riding a wave in the ocean. It’s stepping one foot in and knowing that the wave will wash over you, cleansing your body with all it needs for radiation to work but in an instant that undertow scoops you up and throws you under and into the rocks. Water rushes all over your body and its hard (if not impossible) to come up for air when you need it. You can see the shore, but you can’t get there by yourself and you just pray that the current changes and drops you back on the beach. And finally when it does, you have lost days and memories and you’re left gasping for the air that was sucked from your chest.
And then it’s done.
And you’re not supposed to think about it again until you sit in that chair with the IV running, because what’s the point? Fear? That’s not healthy. Plus, every day until then you still have a job to do: eat, hydrate and get to radiation every day.
So, I will try not to think about it. It’s why I write about it instead. I drop all my thoughts onto this keyboard and let it spill out of my mind so that for the next 13 days I can attend 9 radiation appointments, putting one foot in front of the other.
In the meantime, I am envisioning full and complete healing. Because that is the job of this treatment, it’s why I am enduring each day, because I have every faith that it is doing it’s job.
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.