“I don’t think you needed any chemotherapy at all, to be honest.”
He tells me this as we are camped out in my neighborhood’s newest restaurant, sharing spanakopita that does not fall within any part of my restricted diet but which is so incredibly delicious that he insists I try it. It is worth every risk that comes with putting it into my mouth.
“You don’t think I needed any at all?” I question as I tuck my feet up beneath me and reach for my lemon water. “Any?”
“Don’t you remember your surgeon being so confident she got everything? Chemo was just a precautionary measure. I understand why they had you do it. But I don’t believe you actually needed a drop of it.”
I laugh at this plain observation. I laugh because it is so true. I laugh because the horror of the fact that I let them do this to me when I never needed it at all will otherwise thrust me into the kind of hysterical sobbing that has no place in a candlelit restaurant.
“You’re right,” I tell him through my giggles. “I never needed any of it at all.”
* * *
Its been quiet around here in the last week, hasn’t it?
I have a running list of things to tell y’all about. From the nitty gritty details of Costa Rica to the miniature healing journey I went on this past Saturday, and lots of tick-tacky things in-between. The running list of posts to draft is getting unwieldy but as I continue to experience morning migraines, I also find myself asleep in the 9pm range many nights (I legit fell asleep in the bathtub at 8pm one evening last week). So time to write has been scarce. Honestly – time for much of anything other than getting my job done is at a premium these days. My body just needs rest.
No, I do not believe I am getting sick again.
I believe all the chemotherapy is finally leaving my body, but its getting its last punches in first.
* * *
I am frequently asked what is the one thing I wish people knew about cancer. What I’ve come to discover is that what I really want them to know are the things about life after cancer.
Principally, I wish people understood how long its impacts are felt in the physical body.
I would tell you that I am surprised by the number of side effects I still struggle with, but I’m not. This isn’t my first rodeo and I know that after my Hodgkin’s there were lingering side effects at the five-year mark. And the dosage I received then was much lower than the dosage I received through my clinical trial this time around. Plus, I was just a little bit (*ahem* 14 years) younger the last time around. Add to that the fact that we were giving this second bout of chemotherapy to a physical body that had already experienced the ravages of both chemotherapy and radiation therapy.
I knew we were looking at some long-term damage.
At six months out, I wake with near-daily migraines. They don’t last all day, but they make my mornings slow and sluggish and sometimes hang in there until about noon. I also wake with pain throughout my body. My joints do not want to move and I’ve contemplated returning to nights on the couch so that I can avoid the painful trek down the stairs to feed Hope in the morning. This eases up as the day goes on – particularly if I am able to get an asana practice in – but by the evening I want nothing more than to soak in a steaming hot bath.
I still struggle with chemo brain but I am finding that the more I work on reading for longer stretches the more it is coming back. The headaches complicate this some, but I am seeing improvement and that makes me very, very happy.
Most impactful on my day-to-day is my body’s lack of temperature control. I am learning to dress in items that can breathe well (for times when I enter a warmer space, sending my body into an overheating situation – and usually a hot flash as well) but that can be layered to keep me warm (for times when I am in a cooler space and my temperature plummets). I am really looking forward to spring when I might do well with a dress and a sweater, but for now I might as well be lugging a suitcase around with me on the typical day.
I am also excessively tired. But I attribute this more to the amount of cleansing and healing that is taking place. Even if you aren’t participating in a therapy that requires you to physically move very much, energetic and emotional healing are extremely taxing. And that is reflected in how much sleep I require these days.
It seems that when most people hear that chemotherapy is over and your disease is in remission, they assume things are back as they once were, that status quo had returned.
I wish they understood how much healing still needs to be done. And how difficult that can be when the expectations are that the rest of life start moving forward again.
* * *
“Who told you this was the best route to take?”
Dr. Jones was flipping through my extensive file. For reference, my oncology file now consists of three file folders that are held together with brads and rubber bands and still threaten to topple anytime a physician pulls them out in their entirety.
Due to the aggressive nature of ovarian cancer, I was counseled to start chemotherapy no more than two weeks post-surgery. That didn’t leave much time for concerted decision making. Add to that the limited ability for me to get into the strongly recommended clinical trial, and I had really made my care decision within hours of coming out of the recovery room. I was in full on panic mode (who wouldn’t be?) and was at the beginning of what would be two weeks of nothing more than an ongoing state of fearing that I was on the brink of death. So I didn’t even have much in the way of capacity to decide what the best route of care would be. I trusted my physicians and I did what they recommended.
As a result, I found myself taking 5 chemotherapy drugs for 6 rounds. I took one orally twice a day for seven days and then on day three sat in a recliner for 8-9 hours as they hung bag after bag of poison (4 additional drugs) and let it slowly drip into me. If you do the math, that means I spent somewhere in the ballpark of 48-54 hours with an ongoing stream of toxins flooding into my body over the course of four months.
With the benefit of hindsight, Dr. Jones believes this was overkill for my body. That I only truly needed two of those drugs. With the benefit of hindsight, I’m pretty convinced I never needed any of them at all.
But I received them. Willingly. And now it’s time to pay the piper.
* * *
“The first thing we need to deal with is clearing out the chemotherapy that is still in your body.”
It was my first session with Ron (my medical intuitive) and I was still so out of it from surgery that I was confident that I had heard him wrong.
“I haven’t done any chemotherapy yet,” I tell him.
“Not from this time,” he explains gently. “This is left over from the Hodgkins.”
Yes- some 14 years later there were still remnants of chemotherapy left in my body. Chemo hangs in there – and if you don’t take some aggressive measures, it will be there to stay.
* * *
I’m going to do that thing I hate here and remind y’all that I am grateful.
I do think I needed to endure the chemotherapy I went through.
My physicians are and were excellent. I still trust them.
But I needed to learn to trust God more.
And I could only do that in the space that chemotherapy created.
So while my physical body may not have needed it, my emotional and spiritual body did.
I just wish everyone understood how long it can take the physical body to recover.