Pro-Tips for Managing Life and the Medical System During A Health Crisis
The purpose of this post is not to sensationalize or exploit a very private matter; I am not seeking attention. Rather, I want to address challenges that all of us must face, likely multiple times throughout the course of our lives: How do we make big, life-changing, seemingly impossible decisions? How do we navigate confusing medical terrain and still maintain our “normal” lives? What are the lessons we can learn from it all?
I’m not the first or last person to experience medical drama. Nor do I think this is the worst medical story you will ever hear or possibly experience. But it is a personal trauma that, like many, I’ve been navigating largely on my own. Yes, I had the help of my mom and a few close friends, but these are predominantly solo ventures.
We often don’t talk openly about these uncomfortable circumstances, particularly when they involve our reproductive health. I don’t know if it’s shame or the risk of feeling like damaged goods, but even women don’t often talk amongst themselves about these details. But if we don’t share these challenges, best practices, and lessons learned, we are left to feel alone and others can’t benefit from our experience.
Here’s some of the wisdom I gleaned throughout these trials:
DEVELOP A CONTINGENCY PLAN FOR WORK AND LIFE WHEN THINGS GO SOUTH
A close friend asked me what I needed when I found out it was invasive cancer. I responded, “I need someone to tell me what to do.” Decision fatigue was weighing me down. I was tired of needing to be the alpha in charge of so many important decisions.
Managing your health during a crisis is like taking on another full-time job. What I needed was a project manager. There’s so much extra stuff you want to know — the intricacies of this rare form of cancer, potential targeted and complementary therapies, helpful dietary info, etc. — that I outsourced some research to my research assistant. I’ve been listening to podcasts and reading articles about this stuff for years, marveling at the anecdotes and research. But now that I actually needed that info, I didn’t know where to begin.
I also work for myself, and there’s no PTO or “sick days” when you are self-employed. I worried whether I could continue to juggle all my professional responsibilities without compromising the work and clients that I love and an independent livelihood I worked so hard to create. I don’t often long for employment at a large organization, but it’s in moments like these that the ability to call in sick and put up an “out of office” email reply is verrrrry attractive.
This was my solution: I prioritized my healing protocol and my work and tried to outsource or let go of most everything else. Friends took turns coming over to help me throughout the week (thank you, my angels!!), I enlisted a cleaning person, signed up for a meal delivery service, and cut out anything that didn’t either contribute to my recovery or keep money flowing in. I reminded myself it was a temporary state.
STOP MANAGING OTHER PEOPLE’S EMOTIONS AND TRYING TO CONTROL OR PREDICT EVERY DETAIL IN YOUR LIFE
At times I think it’s even harder to navigate these situations for the people who love you. I was worried about my mom — if something happened to me, it would be devastating for her. I was worried about my clients — would I fall behind? Would I produce subpar work? I was worried about this situation defining my life and being my only talking point — cause who wants to hear about cancer all the time?? I don’t! I struggled with what to tell which people, when — what’s TMI and what needs to be communicated so people can support you and cut you some slack? This was a daily negotiation.
Over time, it becomes gradually easier to relinquish control and give up on catering to everyone around you, but it’s always a struggle. I have to constantly remind myself that getting healthy is the best way I can not only take care of myself, but also alleviate some of this worry and stress. So that helped me to justify (to myself) putting my energy toward healing rather than catering.
INSURANCE IS THE WORST, SO ALWAYS ASSUME THE WORST WITH THEM AND BE PUSHY ON YOUR OWN BEHALF
I know that sounds negative (and perhaps really obvious), but there really is no silver lining with our current insurance system, as far as I can tell. I especially recommend calling your insurance to double check charges. I’m not exaggerating when I say that I was incorrectly charged around 50% of the time I was sent a bill where some portion was listed as the “patient responsibility.” When I would call, they explained that either a) the wrong code had been used and/or b) they were reprocessing the claim (but my bill did not indicate this, and I’m certain they would have accepted the money had I gone ahead and paid the bill).
Being diligent and paying the bills as they come in WITHOUT double checking with your insurance definitely wasn’t a good option for me. So now, before I pay anything, I take the time to call and have them double check the charge. And I pretty much always ask to be escalated to a manager. They’ll tell you that person won’t have any additional information or power, but in fact they DO. It’s worth the aggravation of calling. And don’t worry about them liking you (if you’re a natural pleaser). I explain my situation, express my frustration, articulate that I know they are not personally responsible for their organization’s dysfunction, and ask them to help me correct the situation. Empowering them is usually more effective than berating them (though I’m not above the latter when needed).
FIND AN EXPERIENCED HEALTH ADVOCATE YOU CAN TRUST AND LEAN ON
In 2015, when I first discovered I had a giant mass in me, I struggled to find trusted referrals. Once I began acupuncture treatment with Misha Cohen of Chicken Soup Chinese medicine, things got much better (see my “Treatments” post for more on her). A long-established local SF acupuncturist that partners with doctors (even co-authoring journal articles with them), she became the health partner and advocate I needed. She wasn’t replacing my doctors or medical treatment, but she was helping me find the right caregivers and supporting the work they were doing. (It’s worth noting that throughout what would become an initial 7-month ordeal, she was the only health professional who looked me in the eye and asked, “How are you doing? How are you holding up?” every time I walked into her office. That comfort was priceless.) She continues to be the resource I turn to when I need to link up with trusted health professionals, including everyone from doctors and surgeons at major hospitals, to doctors who have gone solo, to alternative medicine practitioners.
QUESTION ALL PILLS AND DISCUSS THEM IN-DEPTH — DON’T JUST BLINDLY TAKE WHATEVER PRESCRIPTIONS YOU’RE HANDED FOR THE DURATION THEY’RE PRESCRIBED
After my first surgery, they insisted I take pain meds for the first day (something I fought, but eventually gave in to). Codeine was their drug of choice, and when I went off it after only one day, the pain didn’t increase (I substituted ibuprofen), but I had severe migraines and broke out in full-body hives from the withdrawal. Feeling like every inch of your skin is being gnawed by fire ants when you are already too weak to function is beyond punishing. So now I avoid codeine.
For my second surgery, I took tramadol for two days and felt side effects when I discontinued (headaches, general flu-like symptoms, but no hives). I wanted to avoid opiates altogether for my third surgery, so I tried gabapentin, but it didn’t work. My pain level was at an all-time high after the third surgery due to the lymph testing they did on my right side. I’ve never experienced pain like that in my life. So I succumbed to the tramadol for a day to get the pain under control, then switched to alternating between ibuprofen and Tylenol every three hours, as well as high doses of CBD with a little THC (via tinctures, edibles, and vape pens) for two weeks (yes, that’s how long I was in pain; I tried cutting back on the ibuprofen/Tylenol periodically, but the pain flared up again if I didn’t keep up that dosing schedule). My withdrawal symptoms were minimal after one day of opiates, but it’s shocking how much the withdrawal symptoms worsened when I took the opiates for two days instead of one. I have a better understanding why and how people become so addicted: it’s less about how great you feel on them and more about how crappy you feel trying to get off them. I threw away the remaining pills.
IF YOU HAVE A MASS OF ANY SORT, VISIT AN ONCOLOGIST BEFORE GETTING SURGERY. INSIST THAT THEY ARE PRESENT FOR THE SURGERY IF THEY BELIEVE THERE IS EVEN A SLIGHT CHANCE THE MASS IS CANCEROUS.
An oncologist was not present for my first surgery, because my gynecological surgeon was convinced it wasn’t cancer (and was convinced she could save the ovary, which did not happen). At the time, I had no experience with this sort of thing, so I trusted her. But oncologists follow a different protocol for tumor removal, which helps to safeguard against any spillage of potentially cancerous cells. Once she cut into me, she realized the tumor was even larger and more complex than expected, and the oncological protocol was not followed, so the likelihood of some cell spillage was high, plus the approach she took to the surgery caused me to lose a tremendous amount of blood and become severely anemic. I believe these would have been largely avoided with the assistance of an oncologist, given how radically different my second and third surgeries were with an oncological surgeon using robotic technology.
IF YOU KNOW YOU DEFINITELY OR LIKELY WANT CHILDREN, CONSIDER EGG FREEZING SEVERAL YEARS BEFORE YOU THINK IT MIGHT BE NECESSARY. I BELIEVE IT’S WORTH GOING INTO DEBT, IF THAT’S WHAT IT COMES TO; ONLY YOU CAN MAKE THAT CALL.
Since I was still in my 30s, the future of my fertility was the other big issue in this jumbled mess. After the first surgery, I was unexpectedly down one ovary, and they had their eyes on removing the other in the near future. So they smartly recommended I freeze my eggs. (One facilitator at the fertility clinic questioned why I didn’t just browse through their extensive list of eligible sperm and pop out a baby immediately. I was not ready for that. Yet.) Egg harvesting and freezing is an expensive endeavor, and therefore it hadn’t previously been something that seemed like a financially viable option for me. But desperate times….
You may not know this, but both the Livestrong Foundation and Walgreens (yes, Walgreens) offer programs that make these extremely pricey IVF hormones free or low-cost for people with cancer. (Mr. Armstrong may have disappointed us on many levels, but his foundation continues to do some incredible work.) These subsidies made the procedure (slightly more) affordable, though it was still a major investment.
Many people who undergo the egg harvesting that leads to IVF have a partner inject it, but I knew I was going to be injecting myself, which was more daunting than I might have imagined. I nearly passed out the first time I had to play doctor and carefully mix multiple different vials of hormones and pierce my abdomen with a large needle. I also wasn’t prepared for the extreme burning sensation that lingered post-injection. The nurse suggested I try having a glass of wine to relax before the injection; I decided inebriation and sharp needles were not the best combo.
While the egg harvesting prep is tedious and complicated (blood tests nearly everyday and hormone injections twice a day for several weeks), the actual procedure was far less dramatic than the surgery, thankfully. My one little ovary-that-could stepped up and produced a nice crop of eggs, with the yield doubling their initial estimate and giving me enough to likely birth a small family when the time was right. (I was also getting acupuncture twice a week and taking herbs during this time to boost fertility.)
The one thing those many months of drama did give me was peace of mind, thanks to the egg freezing. It was not something I would have been able to afford at the time or even in the next couple of years, but this forced my hand. Even if I hadn’t had a cancer scare, I was still going to keep aging. And I was (newly) single and not with a partner I was ready to start a family with, so this was truly a gift — or at least that’s how I look at it. I attempted to focus on that gratitude and put the rest out of my mind.
DOCTORS ARE NOT ALL CREATED EQUAL — EVEN THE REALLY SMART ONES.
While I don’t always agree with the approach of my current doctors (I moved from UCSF to UCLA), I do not doubt their skill. I had an incredibly skilled oncological surgeon for my second and third surgeries (both of which were laparoscopic and robotic), which allowed for less blood loss, less inflammation, and an initially saved ovary (despite the fact that we had to go back in and remove it two weeks later once the pathology report came back). His entire team was impressive and cohesive. It was a wildly different experience from three years prior.
Ask around about your surgeon’s reputation and do your due diligence; it’s too important of a decision to just go with whomever you’re assigned. I’ve been known to spend weeks online searching for the perfect jeans; my health demands the same level of scrutiny and rigor that I apply to denim.
INSIST ON DISCUSSING POSSIBLE WORST-CASE SCENARIOS AND EXPRESS YOUR ANTICIPATED WISHES WITH PEOPLE IN AUTHORITY, PRIOR TO PROCEDURES
When the second mass grew in 2018, my new oncological surgeon believed he could save the ovary, despite the enormity of the tumor. However, as an oncologist, he strongly advised against it. Due to my history and because the new mass was presenting as a likely tumor, he considered the risk of recurrence to be high if we removed the tumor and left the ovary. Even following the cancer protocol, cells could be spilled and my ovaries had proven they were cancer-prone (despite having no genetic predisposition for it). Alternatively, he said he could biopsy a portion of the tumor while I was in surgery, and if it was cancerous, remove the entire ovary, or if it was not, try to save it.
I was overwhelmed by the choices. How could I possibly make the “right” decision?
I was no longer as young as I had been during the first surgery, meaning I had 3.5 fewer childbearing years left. Even if he could save the ovary for now, he knew he eventually wanted to go in and remove not only the remaining ovary, but perform a complete hysterectomy to safeguard against other cancers for which he deemed me to be high-risk. So regardless of what I decided for this surgery — ovary or no ovary — this would likely not be the end. I wanted to put off the hysterectomy for as long as possible, giving me the option of carrying my own children with either natural conception or via my frozen eggs. But did it make sense to also risk a potential third recurrence of ovarian cancer to hang onto more years of ovulation and natural hormone regulation before more problems arose?
And if I did have the ovary removed at this time, what method of hormone replacement therapy would I go on? Opening that can of worms made my head spin. It would be imperative to begin it immediately after surgery to safeguard against all kinds of negative side effects and preserve my uterus for future use. Before this happened, I’d listened to and read about several pioneers in the hormone replacement therapy field, and I knew it was definitely more of an art than a science. I’m an academic and I’m no stranger to research and self-initiated education, but I knew I needed more time to make this decision and develop a protocol.
I was also not in a relationship, so it’s not as if my life partner and I could just accelerate our conception plans and get on with it. So would it be foolish to take this risk knowing all the many variables — from finding the right partner to warding off future recurrence — might not fall in place in the necessary timeline?
Since I have my eggs frozen, more than a few people asked me why I didn’t just use donor sperm and have a baby on my own. After all, I’m a strong, educated, independent woman — why wait for a man to actualize that desire? It’s a great option for many people (one high-profile single woman who accidentally got pregnant and decided to raise the child on her own a few years ago even went so far as to proclaim that the “new normal”). For me, this was not a new normal, this was my old normal: I was raised by a single mother and never knew my father. It was not easy, on multiple levels. And those struggles are not something I am eager to replicate with my own children. That’s not to say that one must have two parents or that there is a singular acceptable familial configuration. Far from it. But I want to create a new paradigm for my family that’s different than the one I grew up with. Had I been raised in a big family with ample financial means and support, perhaps I would feel differently. But that is not the case.
So, I knew what I wanted. I instructed my doctor to save the ovary if possible. I asked him to biopsy it during surgery, and if it came back negative or borderline, we would save it. It it came back invasive, he had my permission to remove it. The biopsy was inconclusive, and he thought it looked borderline, so he saved it. But a week later, we got the full report back, indicating invasive cancer. So back in we went.
Do I regret that initial decision to save the ovary? I try not to think about it. I think I made the best decision that aligned with my goals given the information I had and the expertise of my doctor. Contemplating anything beyond that is futile and crazy-making.
Your doctors, friends, and random public figures have different priorities than you and sometimes have competing objectives. Weigh their opinions, then analyze what aligns with your needs and make your decisions accordingly. There is no right answer, only one that’s best for you. Commit to your choice and charge ahead confidently.
A few additional tips:
Schedule a caretaker for more time than you think you’ll need post-surgery (stuff goes wrong / not as planned; give yourself some padding)
Explore alternative pain meds (cannabis is legal in California and many other states and products can be delivered to your door)
Push for faster action and more urgency (bureaucracy is rampant in the medical system, and when you have a fast growing tumor or a rapidly accelerating condition, you must advocate on your own behalf — your doctors are too busy to do that for you as diligently as you can or need. Don’t worry about seeming pushy; pushy wins in this case.)
