melinoe29

[jvzebel-x]

🦋

[braindamageforbeginners]

A New Doctor

Cycle 9, Day 10

So, I now have at least a half-dozen physicians on my case. If you believe the BMJ stat that “medical misadvenure” (which is a broad category that includes, but is not limited to, doctor error, nursing error, pharmacy screw-ups, misdiagnosis, accidental overdose/drug interactions, opportunistic infections - the list goes on) is the third-leading cause of death in America (according to the same study, heart disease is #1 and cancer is #2). So, for those for those of you setting odds on my life expectancy (and, frankly, I’d be disappointed if you didn’t), it’s been an odd, extended game of “Clue,” except I’m Mr. Body, to see if disease, side-effects, or my possibly-insane physicians will get to me first. I hate to say it, but I think I’ve finally figured the odds-on favorite in this one: my GP.

This isn’t a plea for help, or even a serious medical development on my part, it’s a warning for you, the readership, as insurance enrollment comes around. First of all, if you can’t pay, hospitals or physicians can throw you out on the street (this is something able-bodied people are so disbelieving of that took a poor black woman freezing to death on-camera in Baltimore). They are only required to treat you if you in an emergency situation, thanks to some federal laws called “EMTALA.”If you have a disease that drives you to the emergency room, the prognosis gets worse. People tend believe that just because it’s the healthcare industry, the health insurance industry isn’t a corrosive force that has a vested interest in denying care and killing you. Which is odd to me; you don’t get this anywhere else (or I haven’t experienced this sort of self-delusional attitude); you don’t see people defending McDonald’s or Nabisco or RJ Reynolds or Exxon as having their best interests at heart (and, to my friends who think they’re bullet-proof because of their health insurance, read the fine print, very, very carefully; you don’t want to get a nasty shock as you’re being rolled into the OR). So, thanks to my parent’s generosity/desire not to see me die, I rolled in last year with a very expensive PPO (there are a lot of acronyms to keep track of, but PPOs allow the patient to see anyone in a preferred provider network, which tend to be large and give the patient lots of choices, so you can directly get a referral to a neurologist if you hit your head). Unfortunately, because I have pre-existing conditions (and to my bullet-proof friends, read through the list of pre-existing conditions that’ll disqualify you, your jaw will drop)(also, it’s telling that Congressmen and Senators have the option to buy into a separate, federal employee health insurance option that’s not available to us serfs)(it’s also telling that the ACA required Congresscritters, for the first time ever, to tough it out and find health insurance like their constituents)(which is why I assume all the GOP higher-ups had melt-downs over the ACA - a slight removal of privilege to help sick constituents isn’t a part of Congressional ethos, let alone job description), my premiums went from “expensive” to “leasing a sports car” within a few months. I’m extraordinarily grateful to them for providing that financial backing, because it allowed me to continue getting treatment during the crucial 6-10 week GBM post-diagnosis period that might turn this from “Guaranteed doom” to “far too close for comfort.” So, this did give me some time to do my homework (in writing about this, I’m realizing I really should consider applying to law school, because I’ll know more about medical and insurance law and ethics than some lawyers before this is up)(Hell, I probably know more than some of them right now). Anyway, I found that all the specialists I see for cancer, do take medicaid (even the specialized pharmacy I use at the cancer center). Which is good for me, especially since being on disability in California is an automatic qualification for Medicaid. Now for the bad news; although all the specialists there take medicaid, the GPs don’t. AND the specialists only take medicaid if it’s done through an HMO carrier that the state sub-contracts with.

Great Kraken’s Balls.

There are a number of documentaries and documents (including an “Adam Ruins Everything” segment) on why HMO’s are unnecessary and lethally incompetent (like many other aspects of a for-profit medical system), but here’s the most basic deal: They act as a gate-keeper for the entire medical-industrial system. You can get your care at any of a dozen pre-approved hospitals, and nowhere else. Now, if an HMO or their doctors can’t treat you (or refuse to treat you - which is still the case for a lot of GBM patients), they are required to send you to a specialist who can. The economic incentive is to give less care, and keep all the patients in the system for as long as possible.

I suspect that delaying tactic is why heart disease and cancer are considered so deadly - you can’t sit long on either of those.

So, based on the financial folks at the cancer center, I picked one, and promptly forgot about it; because I’m already in the system there (the receptionists and pharmacy staff recognize me on sight)(which is comforting, until you realize it’s a cancer center, and then the panic briefly cuts in until you remember you’ve gone eight months without regowth or metastastis). I only remembered it when I got a call from the medicaid HMO telling me I should schedule an appointment with one of their physicians. This isn’t a big deal, I just need them to sign-off on any further black magic-based treatments with the Warlocks or Radiation Oncologist.

Now, before I go further, let’s talk about the people who go into medicine. Like anything in healthcare, we tend to give assume that an entire industry is moral, and just; when people go in for a variety reasons (as recently as 20 years ago, the vast majority of medical students said it was for money), and it’s worth noting that cuts across a vast majority of demographics and motives. And, for better or worse, that cuts across vast swathes of competence - for far too many folks, it’s a job - a rewarding job, but just a job. My father recently inquired about board exams and recertification as a way of guaranteeing some basic level of competence from everyone. He’s right, but the key word there is “basic.” Again, “basic” is fine for first aid and most major medical issues; it’s unacceptable if you have a disease with a 90% fiver-year mortality rate.

I bring this up because I think I chronicled my first appointment with my insurance-appointed GP five or six weeks ago and seemed perfectly satisfactory to my ongoing addiction to experimental chemotherapy. I’m certain it was within that time frame, because I had schedule a six-week follow-up. Which, sadly lands on my “week off” chemo. So, yesterday, after infusion #2 for this cycle (for those of you wondering what I’m doing to stay busy during infusions these days, well, rewriting Christmas carols for cancer patients)(”On the first day of chemo, the nurses gave to me, zofran in an IV”). I also convinced dear old Dad to take me out to lunch, because, again, when the Marizomib side effects hit, you do not fee like eating. This was in the neighborhood of the latest addition to my collection of medical people, so I thought I’d reschedule then. And was told by the receptionist to wait for everyone behind me to check in lest they be late for appointments. That would be fine, but it seems a fundamental misunderstanding of how queus work. And, any time post five-ish hours on infusion day, even though zofran might keep me from puking, it does give me an odd, oily, queasy sensation. I think I deserve some sort of gold star for not puking on this woman right away (again, if you have unconventional problems, feel free to start with an unconventional approach)(my next writing project will be titled, “Life Lessons from Necromancers”). I eventually - using the traditional method of looking down the reception counter, noticed someone not otherwise occupied, and manage to get an appointment more amenable to my schedule. For a physical.

Again, I’d love to use some four-letter words here, but even Finnish fails to meet the requirement. Now, it should be noted that, even though I’m well-aware that I’m physically Adonis-like; I am in chemo and recovering from radiation treatment, Radiation Oncologist implied a few months ago that, even though my scan was clean and looked good for someone with brain cancer, anyone unfamiliar with my case would probably freak out about them. Same thing with my abnormal, uh, “lab sample” I wrote about recently - the nurses agreed, a single abnormal test is hardly unexpected toward the end of chemo, especially since I’m now on a diet consisting mostly of protein, fiber, cafeine, and dangerous, experimental substances. However, I’d prefer not to have to point all that out to a new medical person who has the power to yank the plug on me (sadly, my original GP will be on vacation that week. (I’ll also be on Temodar, so there’s a solid chance my brains will be thoroughly scrambled and incapable of comprehension).

ANYWAY… WEIGHT: 198 lb CONCENTRATION: Pretty good, APPETITE: Normal (but this is 24 hours post-infusion. ACTIVITY LEVEL: Not great; the fatigue side effect definitely caught up with me and chewed me up last night. SLEEP QUALITY: Okay. although I’ve noticed that I definitely thrash around on chemo days. COORDINATION/DEXTERITY: Lousy. Thank Gods I don’t need the walker, and I don’t even think I need my magic ankle support, but my left leg is definitely unreliable today. MEMORY: Not bad, although I did forget my sheets were in the wash earlier today (although I recall stripping the bed and tossing them into the washer). PHYSICAL: Tired and kind of wobbly, but still a lot better than this time a year ago.. EMOTIONAL: Okay. It might just be that I spent yesterday next to my zofran-and-CDB salt-lick, but I’m starting to think I might make it through all this somewhat intact. Hang on. Am I really starting to believe my own bullshit? SIDE EFFECTS: Tired, somewhat sore (either chemo or increasing the difficulty of that stupid elliptical), and in the wrong time-zone, but, other than that, not much.  CURRENTLY READING (For Donna): Gonzo Girl, and The Explorer’s Guild (A Passage to Tshamballah)

[libbyhascancer]

5. chemo is so much worse-better-amazing than i imagined

Next week on Wednesday, May 31, I will begin phase 2 of chemotherapy. I ended the first phase last Thursday, May 18. On that day, I wondered if I should have marked the last dose of phase 1 with a … party? glass of champagne? a prayer? a high-five or strong-arm emoji? 

But, really, it’s simply the end of one set of drugs and on to another. From one set of possible symptoms and complications to another set of possible symptoms and complications. While my body will undoubtedly recognize as new and different next week’s chemicals, the process will be the same for the most part. 

That is, I will gear up for the day with a tizzied awareness of impending incapacity—drawing on energy stores to attend at least one spin class, do some housework, complete freelance assignments, and generally prepare my mind for the potential of being in bed for a few days. Post-chemo hibernation. 

On the day of chemo, I will pull myself together: take a shower! put on makeup! wear a cheerful ensemble chosen largely because it goes with the ridiculous head scarf of the day and because let’s be honest, I am my mother’s daughter. One does not roll into chemo wearing sweats, baggy shirts, and your undone face. 

(A sidebar on scarves: Practically speaking, it’s surprisingly hard to plan your clothes around your accessory—particularly when that accessory is a head scarf designed to cover your bald head while not standing out too much. And by hard, I mean impossible. When has anybody wearing a head scarf ever walked into a room and been met with casual reactions or glances that say, “Gosh. She looks different. What is it? Has she lost weight? Or is that a new shirt? Hmm. I can’t place it. Oh, could it be the scarf? Just maybe? Oh, and wait. Is SHE bald? Never would have guessed it under that jaunty silk scarf.”

It’s a similar fashion conundrum to the one I faced in late summer 2013 as I rode out the last trimester of pregnancy wearing a large black orthopedic boot in 90-degree heat and yet searched for just the right ensemble to look adorably pregnant and fit. Lost cause. Truly. 

There’s a reason scarves are accessories and, by definition, should be secondary to your overall fashion statement.)   

There is also a true and welcomed side effect to getting coiffed and finding the right scarf: It’s a much-needed distraction. No matter how many times I go to chemo, I am a nervous wreck. Shaky, fiddling, tapping, over-wrought, curt. Yes, the nurses are kind, the doctor takes his time answering (and reanswering questions), the infusion nurses are upbeat. Still, it’s probably the most unnatural way to spend a few hours. 

Sit back, relax, let’s insert this needle to your port (hope you applied your lidocaine cream properly) and start the flow of these insanely toxic chemicals into your body. Here, enjoy a warm blanket. Lean back your chair. Close your eyes. It only takes a few hours. Your only interruption will be the nurses asking you to confirm your date of birth and name each time they must switch the bag of chemicals. Or when a nurse must sit on a stool next to you in order to infuse one drug by hand because even the smallest chance of it being infused too quickly can risk a serious chemical skin burn. Don’t mind the smell of lunch that wafts in with the dutiful and loving wife who visits her husband at noon during every one of his Thursday chemo sessions. Just relax and turn away from the inappropriate and over-used jokes told to nurses by the man who uses an Adirondack-inspired walking stick, looks 20 years older than his age, wears sweatpants on his undernourished frame, and yet still manages to inspire “ah shucks, there he goes again”-smiles from the staff. 

This is not to say I don’t feel good about moving forward, about working my way through treatment. It’s simply the reality, at least in my mind, that there are no great milestones during cancer treatment. There’s a plan, a map, and it includes dates next week, next month, next year, five years from now (if all goes well). 

It is at once mundane and heart-breaking, tedious and earth-shattering. Remember pregnancy, and giving birth, becoming a parent? It was a little of the same, wasn’t it? 

It’s the greatest thing our bodies can do. It’s mind-blowing, it’s awesome, it’s spiritual and otherworldly. And yet. It’s the day in and day out. It’s crying. It’s poop. It’s breastmilk. It’s today, tomorrow, next week, next year, and on and on and on. There are moments of sweetness, unimagined and unimaginable kindness and love, but it’s a long hard journey nevertheless. 

For me, the facts of the matter comfort and engage me. So allow me to pause the ramblings and turn to some details. In many ways, cancer is really fulfilling my inclination to learn how things work and what’s happening behind the scenes. Here’s what I (very subjectively) find most interesting about my cancer treatment: 

1. My phase 1 chemo is known as AC (and while this is mine, I believe the course of treatment is essentially a run-of-the-mill breast cancer protocol for this kind of tumor, for women my age). AC stands for the medications Adriamycin and Cytoxan, which have been used since the 80s against breast cancer. It’s referred to as a dose-dense chemotherapy, I believe because I’m receiving the full regimen possible versus a lesser dose that may be more appropriate for a patient with other health concerns.     

2. My chemotherapy is being given as a neoadjuvant treatment, meaning before surgery. Interestingly, it seems most breast cancer conversations start with a breast surgeon—perhaps with the assumption that surgery is the primary treatment? You’re referred to an oncologist when it’s deemed chemotherapy should be included. In my case, chemo is the initial method of treatment due to the tumor’s size and aggressive cell growth. 

3. One very cool thing about this approach: Just as cells all over my body started quickly reacting to the drugs—causing hair to fall out, for example—the tumor’s cells started to change as well. The tumor is now softer, less defined. Apparently, it’s relatively common for a tumor to shrink, which makes surgery a little simpler. And it’s also common that once the tumor has been removed, a pathology test shows no more active cancer cells! Amazing, right? This is why it’s good to have breast cancer in 2017. I can’t even imagine suffering through a less common or hard to diagnose cancer, or breast cancer a decade ago. 

4. Phase 2 will feature Taxotere, another highly effective but newer drug used against breast cancer. Phase 2 will also include some extra-special chemicals that target what’s feeding my cancer: estrogen and HER2 protein. HER2-positive tumors tend to be more aggressive and fast growing, but they also react well to highly targeted drugs like trastuzumab (Herceptin). Apologies as I wade into deep, medical territory that I have no business trying to explain. Bottom line (in my mind anyway): There have been amazing developments in very recent years that let us target not only the cancer, but what is driving the cancer. 

5. Additionally, (can you tell I’m getting excited?) the advancements in drugs that help patients tolerate chemo is equally significant. While some chemo drugs haven’t changed since the 80s, the experience of being on them is completely different. Nausea was a serious and often debilitating (even life-threatening) issue in the past, but a chemo session today includes pre-chemo drugs specifically designed to fight nausea in a variety of ways, across various timeframes. Along with that, there are anti-nausea preventive drugs and pills I take every day plus options for rapid relief. 

6. The final piece of the puzzle is how to manage the whammy that chemo gives your white blood cells. Just as it’s knocking out all those other fast-reproducing cells (hair, stomach cells, cancer cells), it’s also taking down the white blood cells in your bone marrow. When these get dangerously low, they increase the risk for serious infection. In the past, this was a serious complication to cancer treatment. Patients ended up in the hospital with infections more often. Enter Neulasta! 

Neulasta is essentially a bone marrow stimulant. It kick starts the growth of new white blood cells. But wait, there’s more! Up until recently, patients would go back to the clinic for a shot of Neulasta—and that came with all the typical issues of adherence and timing. But, now, ta-dah! I get my Neulasta attached to my arm in an “on-body injector.” The nurse fills it with the medication and turns on the mechanism, and then a timer starts. Exactly 27 hours later, the medication (literally worth thousands of dollars and subsidized somehow by the pharmaceutical company) is administered into my arm. 

Many women tolerate chemo really well now, and I think I’m among the very lucky ones who have a few bad, tired days, but manage to keep up pretty well as long as I’m taking care to nap, eat regularly, and take my meds. So that’s the good. 

The bad is still bad. I expected the fatigue and nausea. I expected, at least rationally, the hair loss. But I didn’t anticipate the extreme toll hair loss would have on my confidence and my mood. 

I also didn’t expect how chemo would prompt menopause. Yes, my oncologist suggested that most women stop getting their periods—which, if you want to search for positives, seemed like one. But what he didn’t say is that it sends your body into premature menopause, and that means all those symptoms that mark menopause—hot flashes, irregular or different periods, mood swings, and insomnia. While I genuinely like and appreciate my oncologist, I believe he would agree that his understanding of how a woman experiences menopause or hair loss is limited. These are the topics that women may want to talk about with a female medical provider or other patients. 

In my case, I had Emily. She’s a nurse practitioner and an amazing caregiver. I unexpectedly started bawling during an appointment. She walked in and asked me how I was doing, and her kind chestnut eyes prompted a complete meltdown. There are times in life when you are so raw that somebody asking you the banalest of questions, “how are you,” can feel intimate and overwhelming.

It had a been a terrible week of feeling bald, bloated, generally crazy and just plain like a failure. Emily knew exactly what I needed to hear and helped me understand what was going on in my body and reminded me that everything I was feeling was indeed sucky but also normal. (Oh, and yeah, there is such a thing as chemo brain, so I’m not actually losing my mind.) 

Well, I’ve covered a lot of ground. And I suspect many of you have dropped off paragraphs earlier. But I had so much on my mind and built up over the last few weeks. There’s more to say, but for now, I’ll sign off. Thank you and thank you and thank you again. Each of you is making this journey easier in your own way. Knowing that I’m in your prayers, I’m in your thoughts, or on your to-do list (!) is a huge comfort. 

I have said this before, but I almost feel like Steve needs more support than me on many days. When I’m in hibernation mode, he’s on the front lines of parenting our 3-year-old, managing the household, opening the dreaded medical bills, working at his very busy full-time job. So, do me a favor. Put him in your thoughts. Or leave a 6-pack on the porch.