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.
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’ve been cleared for tomorrow’s chemo. I should feel excited or grateful or something, but I just feel pretty anxious. This is the final round. PHEW. I feel anxious knowing what I’m walking into, yet trying to remind myself that the meds they gave me last time worked wonders and I have no reason to think that that won't also be true tomorrow too. During Round 1 I thought I was “great” and it wasn’t til I was done taking the meds did I realize I couldn’t remember anything from the week. Except for ordering thinly sliced ham at the deli counter at Whole Foods?? I was really craving a ham sandwich...
So let this be a warning, don’t hold me accountable for anything for the next 7 days. If we talk, I probably won’t remember. If I don’t text back, don’t take it personal. If I overzealously commit to anything, chances are you’ll need to ask me again next week😂Maybe next Monday, we can recap the week prior and you can tell me how it went?!
But seriously, please hold hope alongside me that the week goes as seamless as the Round 1 when I really only had a terrible day 6. I keep reminding myself that this is the last time and when I’m 3 weeks out of Round 2 (like today), I’ll be done!!
My largest hesitation next week is my diet. I successfully maintained my weight this week entirely on liquids. It’s was HARD. But, I think I found a groove and am hoping to maintain weight as long as possible. But with chemo in the mix and my mind not as clear, that will mean lots of planning and help at home. Fingers crossed. My goal is to not lose more than 10 pounds during treatment. So far, I’ve only lost 2. I’m proud of me. That’s pretty darn good. And I keep envisioning all the delicious meals next month...or the month after when I’m able to eat normally again.
Fun fact: radiation affects my salivary glands (amongst other things) and sipping water all day is mandatory. My mouth is dry....and mucous-y gross and the mouth sores make most anything difficult. But today when my cousin opened her salad, the pepperoncinis made my mouth WATER...so much so that Chris may or may not have caught me smelling a jar to get the juices rolling! Whatever works!! I can’t wait to eat again...
Separate from what’s to come, after my blood draw today my girlfriend took me to meet the boys at a pumpkin patch and I was able to watch them play for a short while. It’s moments like those that keep me focused and moving forward. The sweet breaks from counting calories, blending foods, checking mouth sores and keeping track of medications. I can’t wait to watch them trick or treat at Halloween and by then, this treatment will be a memory. Not a distant one yet, but completed at least on Friday, October 26th. I have been told the recovery is more brutal than the treatment itself but at least the days will be clicking ahead...
One day at a time.
And today was a good day.
Here’s to tomorrow. Let’s get Round 2 done, too!!
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.