I haven’t posted any status updates since leaving the hospital a week ago, mostly because I’ve spent the week surrounded by my wonderful family, in my own home, and it has been extraordinary. But I also haven’t posted any updates because so much is currently in flux; and there are so many tests and puzzles and pieces and parts and questions right now that to state anything prematurely would likely do little more than create less rather than more clarity.
However, as I prepared for bed last night, I caught myself looking at my nearly empty bottle of the one thing on which I really allow myself to splurge every 4-6 weeks or so … a nightly skin cream I’ve come to adore. I’ve been an Ivory Soap girl since high school, and have used it on my face twice a day ever since (much to the chagrin of every aesthetician I’ve ever seen). Once I hit my 40s nearly a decade ago, I conceded I should probably use something a little more … anti-aging, so I didn’t end up looking like a raisin by the time I hit 50.
(I know I’m likely losing the interest of the men at this point, but bear with me …)
So, looking at my bottle of $80.00 face cream ($120.00 retail, but – tip – I get mine on eBay), I wondered about the face cream the same way I’ve considered the wisdom of purchasing a few things lately … clothes, shoes, some trinket I liked … thinking, should I really get this, or would the money be better spent on or saved for my family? Will my mom or husband be going through my things in a month or two and end up throwing or giving away whatever frivolous thing I bought for myself just a few weeks prior?
When our own Billy Block passed just a short time ago, I had to nearly stifle an audible cry when I saw his family head down the center aisle of the Ryman Auditorium carrying a simple pine box with rope handles. Because I KNEW that of course Billy wouldn’t want any money spent on a fancy mahogany casket with brass handles and satin sheets, when those funds could go toward the support of his beloved wife and four teenaged sons. Of course he would never rest easy with such a thing. And it was one of the most beautiful and uplifting services I’ve ever experienced.
And that’s when it occurred to me: Even though there are still a ton of questions and very few answers about my prognosis right now, I do have something to report. Quite a lot, actually.
I can report that I ordered that jar of face cream, because I knew in my heart as well as my gut that I would be here at the end of the 4-6 weeks it will take me to go through that bottle. And I will be here to order another bottle when that one is gone. I believe this with my whole heart. And that wasn’t the case 28 days ago, on May 10, 2015.
On that day, Mother’s Day, I learned the ovarian cancer we’d been treating for the past three and a half years had essentially jumped the shark and crossed the blood-brain barrier, settling in the fluid surrounding my brain. I had leptomeningeal carcinomatosis, which is a deadly but not so rare disease, actually. What is rare, however, is for my kind of cancer (particularly in someone who is BRCA1 positive) to skip all the other vital organs in the belly and chest and head straight to the brain. But it had happened to me, and my oncologist drove into town on a Sunday night to oversee CTs of my brain, then deliver in person the news she had suspected but hoped she wouldn’t have to deliver. I was going to die.
Once my pain was under control, which took quite a long time, I was lovingly told by two of the most trusted people in my circle, that:
I likely would not live to see the end of summer; I was not going to survive this; I would not see my daughter turn four years of age on December 1st; I would not live to see Christmas. They told my husband and I we needed to get our affairs in order. They gave us a list of hospice agencies, and suggested we meet with and choose one sooner rather than later. And I felt poorly enough physically I knew they were telling me the truth. I knew they would NEVER take away my hope if they believed there was hope to be found. That’s when I, who’ve always known I could power through anything, truly realized my mortality, likely for the first time since my diagnosis three and a half years ago.
This was the big daddy. This was when I became just as scared as those around me … likely even more so.
I was admitted three times to the hospital before they ended up just keeping me until I completed ten straight days of whole head radiation, because I could not be kept stable at home. And before I was put into an ambulance for the ride to the hospital, I said goodbye to my little girl. She didn’t know it was goodbye, but I feared it might be. I didn’t know if I’d ever see her again. That is a feeling I will never, ever forget.
Now, you’ll notice I’m speaking in the past tense on a lot of this, and that’s because some things have changed, for the better. There are still lots of moving pieces and parts, so we’re being very cautious with our expectations and sharing, but at this moment, the nut of the new developments are:
* Hospice is out for now. I had baseline tests and scans this week and the results are as yet unknown, but it appears as though I can go back on the oral, newly FDA-approved chemo drug I’d just started when we learned of the new brain mets. And they feel there is a chance this drug could actually impact the gyn cancer as well as penetrate the blood-brain barrier and affect the brain cancer.
* We meet with a neurosurgeon this coming week to see if I am a candidate for another chemo drug to impact the brain cancer, which would involve a surgical procedure. If successful, I would receive on a trial basis a chemotherapy drug directly into a port on top of my head. This procedure is extremely low risk, and the risks are non-life threatening (a no brainer, pardon the pun).
* Assuming I qualify and this actually happens, after a trial period of about eight weeks, barring any complications, we will do scans to determine what progress has been made in terms regression vs. progression of the disease.
Of course, my prognosis is still terminal (at least on paper), and we’re are all trying hard to keep our expectations in check, but it appears I may actually have bought myself what looks like to be more time than expected, as in at least a year, which is beyond precious. And in the background, there are other alternative therapies we are pursuing simultaneously as well. To say that we now have more hope from all directions than we ever dreamed would be an understatement.
It would also be an understatement to say that the past month has brought more GIFTS than we ever expected. If that had really been my final goodbye to my daughter one month ago, I would’ve left this planet with enough unfinished business as to be unsettled. Instead, I’ve had the gift of witnessing firsthand what it would be like if I weren’t here. I know my husband and daughter would be just fine. I know my family and closest friends would rally around them, that they’d be well cared for. They’d survive.
When Maggie was just a baby, I came across a cute dress in Target I thought would be cute on her, but they only had a 4T left. I decided to buy it anyway, but when I hung it in the back of her closet, I admit it crossed my mind that I wouldn’t be around to see her wear it. Well, on her first school day home after my being discharged from the hospital, she and her dad came out of her room and she was wearing it, and I was here to see it. Yet another gift, as well as a reminder not to ever count out anything.
I’ve had the benefit of time to clean out many of my closets; not just the literal ones in my home, but those stuffed with emotional baggage I’ve carried around far too long. I’ve known this intellectually all along, but I now know from experience these resentments are not just unhealthy but toxic to both my physical and emotional body. I’ve learned that not using my voice – as both a mother and a human – only stifles my authentic self. And how can I hope and expect my daughter to use her own voice if her mother doesn’t do the same? I know that when we keep picking at old wounds, they’re never going to heal. And I know that our daughter is learning and adopting life skills and coping mechanisms from watching us, even when we think she’s oblivious.
I’ve eliminated so many self-medicators, including things as seemingly harmless as binge watching shows on Netflix rather than going outside to feel the sun on my face. Or having a glass of wine when my body would be much better served with a green juice. Truly being present when I’m with those who are meaningful in my life, including and especially my daughter. I’ve learned that procrastinating makes everything worse, and that doing things in the moment makes life so much easier by comparison that I can’t help but marvel over how I much time I’ve spent over the last several decades over-complicating the simplest of situations. And despite our tendency as humans to forget such lessons once we’re out of the woods, so to speak … I can’t imagine ever going back to my old ways. I’ve now seen behind the curtain. I’m awake. And I don’t ever want to go back to sleep.
I could double the size of this post by listing the gifts, wonders, realizations and magic of the past month, but I’ll save that one. And even if my next post is from my husband on my behalf because there is less than positive news to report, know that I feel more peace, more gratitude, and more clarity in the past month than I ever dreamed possible. I’m good, really, really good.
And I could just as easily triple the size of this update by listing all of those I want to thank, but that one’s coming as well. I’ve always said it, and still believe it to my very core: I’m one lucky, lucky girl.
Image via Ambre Rouse.