Sunset view from the balcony of our apartment in Istanbul
It’s hard to stay positive when chemo fails, whether you’re the patient, a caregiver, or someone rooting for us. The cancer fight is so brutal. The effort – intellectual, physical, mental, emotional, spiritual – is so great. It’s exhausting and tempting to call it a day. To say, I’m done. Time to rest. I’ve gone that low. Severe pain is a game-changer. So is your oncologist recommending hospice. But then, the embers of the human spirit can ignite again, with even the slightest hopeful breeze.
The news of our trip to Istanbul and the direness of my situation may have seemed sudden. The truth is John and I have been clear since early on (~July 4, 2020) that I wouldn’t be one of the lucky ones finishing “gold standard” American treatment in remission from ovarian cancer. We watched as the cancer markers declined at a slower rate, realizing the limitations of the care I was receiving. Really, any statistician would say the same. 80% of women with my diagnosis don’t make it. Still, in many things, effort-in can translate to hoped-for results. We did everything we could around the standard treatment. In many ways, I was able to live with great quality of life, and even hope, for months.
Ultimately, cancer is not an effort-in = outcomes game for too many of us. It could be. I hope it will be someday. That would require a radically different approach to research, medicine, healthcare overall, and the way we care for the planet and our environment. Not all of it is in our personal control. Yes, of course, we pray, but there are also physical realities because WE are the hands and feet of whatever universal force designed this beautiful world. We are prayer in motion.
And now, we have good reasons to be positive in Istanbul.
There are people who continue to push the boundaries, invested in helping truly prevent and heal from cancer (vs publishing the next paper, looking smart at a conference, curiously willing to let the vast majority of patients die over decades-long careers, profiting off the next “blockbuster” drug that gives us an extra ~month of low-quality life, etc). I wish we didn’t have to learn all of this the hard – no, BRUTAL – way, but here we are after almost 2 years of fighting Stage IIIC high-grade serous carcinoma in an ongoing pandemic.
We’ve learned some important news in the last 2 weeks:
- The worst of the frontline poisons (taxol/paclitaxel) given to me in chemotherapy in 2020 WAS ONE OF THE LEAST IMPACTFUL CHEMO DRUGS in vitro on my cancer cells. Oh, we know from in vivo experience in my body that it did plenty of damage to my hair, gut lining, and other healthy tissues, but not my cancer. Yet, paclitaxel is still part of the “gold standard” of care for all ovarian cancer patients. Sure, results in a test tube are not identical to results in a body, but it’s safe to say the experiment in my body confirmed the findings that taxol was not effective against my cancer. Wouldn’t it be smart to do this kind of testing of chemo vs the cancer cells ahead of time?! Like much of the science John and I ended up learning and employing, chemo vs cancer cell testing is available in the US, but it’s a needle in a haystack we had to find ourselves. John found this gem talking with Dr. Robert Moss (of the Moss Reports, a great resource on cancer and integrative and alternative therapies). The Nagourney Cancer Institute does the testing. Thank goodness John found them.
- …because the parp inhibitor (niraparib/zejula) drug I was given after chemo, was similarly ONE OF THE LEAST IMPACTFUL DRUGS against my cancer cells. It ruined my digestion, spiked my blood pressure to the point of concern about a stroke, and made me feel slightly crazy (in no small part because of the carcinogenic and toxic artificial colors in the capsule shell!). Really, GlaxoSmithKine? Is your branding worth our suffering? I was a candidate for this astronomically expensive and profitable drug because I tested positive not for a cancer gene like BRCA (for which the drug was designed – part of the genomic bias of cancer drug design, helpful for the 5% of patients with cancer genes) but a so-called “human repair deficiency gene,” more likely a function of methylation issues which should be resolved in my body with B vitamin supplementation instead.
- So, I finished “gold standard” chemo with cancer cells not only alive and kicking but most likely empowered, smarter from the fight against crude and ineffective tools, thriving against an immune system depleted from the treatments. No amount of discipline, prayer, meditation, or volume/variety of nontoxic therapies could get ahead of cancer at that point. We didn’t know all of this information at the time, but I’m grateful to realize it now. In hindsight, it’s good news because It explains a lot. I still believe wholeheartedly in a non-toxic approach to cancer treatment in most cases, including people who finish chemo with cancer markers in range and those with slower-growing, earlier-stage cancers. Chemo is still obscene and crude. Nontoxic approaches absolutely work. I’m watching others have great success. For some reason, my assignment has included a more aggressive cancer, a full tour of symptoms, and a widespread search for therapies…
- SO THE BEST NEWS OF ALL – is that the drugs the doctors here at Chemothermia in Istanbul are planning to use in my treatment were shown to be EFFECTIVE against my cancer cells in vitro. These drugs, given at lower doses and metabolically delivered, combined with many of the nontoxic therapies I’ve already been using, have a fighting chance of killing the cancer cells rather than me. As Drs. Slocum and Iyikesici told us yesterday, “you simply need effective cancer treatment.” It sounds so easy when they put it like that. Effective treatment and some discipline on my part (e.g., healthy ketogenic diet, continuing nontoxic therapies here and then at home) have a chance of healing my body. Then the doctors emphasized that 51% of the outcome depends on staying positive. Since I’m a scientist at heart, it really helps that we have some good, logical reasons to be positive about this round of treatment.
There are other reasons to be positive here in Istanbul…
I’m an exchange student at heart. I went to Spain for the summer when I was 16 and never stopped loving being immersed in other cultures. Istanbul does not disappoint. I’ve started reading Turkish history (fascinating), studying the language (not easy, but Pimsleur is a great way), and learning about the food and cooking (which should get more fun as I’m able to eat…and yes, a variety of wonderful olives are at the breakfast buffet, just as I remembered). John shares this love of cultural immersion. The uncertainty is more exciting than burdensome to us, which makes the adventure together fun. Did you know that Istanbul has 15 million people? That makes it the biggest city in Europe. Double the size of New York City! It’s at the crossroads between Europe and Asia; you can literally walk across a bridge between continents. Istanbul is also close to so many wonderful places in the world. I’m dreaming of better times as a family exploring historic sites, relaxing on beaches, and frolicking in the seas.
The adventurous part of this trip is a good distraction from the pain and seriousness of our situation. Pain gets in my way too often still. Walking this hilly city (reminiscent of San Francisco) is out of the question right now. Effective treatment should change that. Turkish people have been warm and kind. The people at Chemothermia are making everything as easy as possible in difficult circumstances. They’ve done this work for more than a decade and know what they’re doing.
We are wasting no time. We decided to come 11/10, left 11/16, arrived 11/17, had testing on 11/18, discussed results and a treatment plan on 11/19, and will begin treatment Monday 11/22. Not a moment too soon. Here, I have the chance to live. At home, the conversations with hospice were all too real and painted a clear picture. “What makes for a peaceful passing?” I asked. “Acceptance” was the answer. I accept that none of us gets out of this life alive. I don’t accept that cancer is taking so many of us, brutally and unnecessarily, too young. “Knowledge is your problem,” the hospice social worker told me. Yes, it is. Even as I continue to muster the personal peace to walk through whatever is required of my body and soul, I cannot shake the knowledge that the systems are so broken and so many people are suffering. In many ways, we treat our dogs more humanely than cancer patients in the end. Knowledge wakes us up and shakes us out of accepting current realities that aren’t serving humanity. The truth really will set us free when we collectively understand it.
The Turkish doctors told me to surround myself with people who could help me be positive; they were glad to see John sitting by my side. He’s the best. Many of you also came to mind. Your words throughout these two years, and especially in this last week, have been amazing, empathetic, and uplifting. It’s kinda funny…as if I get to attend my own funeral while I’m still here. It’s heartbreaking and touching. Let’s remember to tell each other all the wonderful stuff anyway, even when life isn’t so dramatic.
For me, of course, our kids have been front and center. They’ve had to grow up too fast in these last two years. They’re up for it, but it’s still not right. It’s hard to describe the depth of their caring, empathy, and maturity as we’ve shared the news of this cancer journey all along the way, good and bad.
So, when the doctors said, “surround yourself with people who help you feel positive,” my subconscious did an interesting thing…
Still jetlagged and struggling physically, I came back to our Turkish apartment and fell asleep. I dreamt we were all together as a family. The kids were little, and we were having the simple kind of fun you do in those days. They gave me hugs. Preschooler/toddler hugs. The spontaneous, passionate, full-body kind. It filled me with warmth. I’ll call on that feeling when treatment side-effects set in again, hopefully not as bad as before.
Teenager hugs are great too, and I got some goooood ones before we left Cleveland. Many of you are wrapping your arms around our kids metaphorically and physically while we’re here. We see you, and it’s astonishingly beautiful. There will never be enough words to express the deep gratitude and peace we feel.
Starting Monday with treatment, we will look for early signs of progress. It’s very basic now, such as can I eat without pain? I’ll be followed carefully with blood tests and scans. If all goes well, I hope I’ll be able to mix in fun pictures and adventures with health updates. Eventually, I hope you’ll enjoy virtually visiting Turkish baths, drinking delicious coffee, and taking in the beautiful architecture and sea views.
Meanwhile, continued thanks for your long-distance company and empathy. It adds up. I couldn’t get to 51% without you.