The Gazebo, Part II.

It’s taken me so long to get back to this. There has been a tremendous amount going on in my life and frankly I’m not really sure anyone even cares about this. But I do, and today has been a rough day, so I am turning to my old friend writing to work it out. This won’t be as colorful or nostalgic or sweet as the previous post, but that’s partly by design. (Incidentally I did add two photos to the previous post.)

The gazebo was delivered in a moving van, deconstructed. It was shockingly chipped and rusted. Our handyman at the time – who I also considered a dear friend – helped us not only find someone to sandblast and powder coat it, but also transported it to the location for the work to be done. Many months passed. As we tried to decide where the gazebo would look most beautiful, we discovered a beautiful, 40-foot split evergreen tree in our front yard had to be removed, much to our dismay. One half of it was dead and the other half was dying, and if it fell, it would fall on our house. We asked the tree specialists to wait until a time when the least animals would be affected by the felling, and when it was down, it left a tremendous empty spot in our front yard, devoid of grass or vegetation. The spot to place the gazebo was suddenly obvious.

Our handyman applied for a permit to place the gazebo on a concrete foundation, which was how my grandfather had erected it in New Hampshire, but was denied on the basis of “impervious surface,” a term I was unfamiliar with (but know all about now). The idea is that if rainwater is blocked from reaching the ground, it can create a real problem for anyone downhill from the blockage. “Can we circumvent that issue by placing the gazebo on pylons?” I asked naively. He told me yes, that was a solution. He laid a gravel bed for the gazebo and built a wooden platform on concrete pylons. He then retrieved the newly painted gazebo and began building it, piece by piece. Each day I would admire it, sitting on the platform, basking in the warm glow of nostalgia. My children sat with me, laughing, making plans for picnics and tea parties, a grand unveiling.

The gazebo in what we hoped would be its location to the right of our house.

Just before he began to build the roof, as I sat one warm June day doing work in my office, our handyman came to me silently, his face long, and silently handed me a slip of paper. I have it somewhere, but really, the particulars are not important enough that I need to transcribe them word for word; it was a Stop Work Order from Lower Merion Township. The gazebo, it said, was being erected illegally; it seemed my handyman had never applied for another permit after the first one was denied. “Can we apply for a permit now?” I asked him. “You can,” he told me, “but they told me it’s a waste of time, that it will be denied.” The form indicated not only the issue of impervious surface, but also a regulation that we both were unaware of – several years ago, the Township code was rewritten, and now no homeowner may erect any “structure” from the facade of their house to the street.

(I am realizing as I write this that this tale is so long it will certainly require a part 3. Buckle up.)

I immediately began reaching out to people – the officer who issued the stop work order (which demanded the gazebo be deconstructed in five days!); the structural engineer I’d previously worked with regarding some issues with a kitchen remodel; an attorney the engineer recommended. I soon discovered that impervious surface applied to ANYTHING with a roof, regardless of its base or sides. I met with the attorney and the structural engineer, who told me I could appeal the decision before the zoning board and ask for relief. In order to do that, I would, of course, have to shell out money both to the attorney and to the Township, but in spite of this I chose to move forward. The attorney informed me it would be useful to get letters of support from neighbors and a letter of non-objection from the local historical society. I was already somewhat familiar with the local historical society because I had joined when we moved here and had also offered to volunteer (although I’d not heard back from them). I immediately set to work obtaining these documents. He also suggested I try to pin down the history of the gazebo – the majority of which I have already included in the previous post.

Almost all of my neighbors were immediately and incredibly supportive. One neighbor even offered to come with me to the zoning meeting. No one said they objected or voiced any concerns whatsoever. I also heard back from someone at the historical society fairly quickly. He said he would be happy to write me a letter of non-objection, and then revealed that we had actually already met – he was (and still is) the director of a local historic property I support. While drafting the letter, he discovered something absolutely remarkable – the gazebo has a twin, and the twin is at the very historic property where he works.

Gazebo at Glen Foerd on the Delaware in Northeast Philadelphia.

My uncle had been helping me research the iron forge that originally produced the gazebo, and we suspected it had been created somewhere in Mississippi, where it was originally erected, or perhaps Louisiana. Having found its twin, I learned something truly amazing. It was forged here, in Philadelphia, by .

My little gazebo had come home. I still get chills and a little teary-eyed when I think of its long, almost 200-year journey to end up less than 10 miles from where it was born.

Sadly, I am out of time for now. I will try to continue this weekend, although I warn you, this tale doesn’t have a happy ending.

At least not yet.

The Gazebo, Part I.

In the mid 1800s, a wrought iron gazebo – at that time, also known as a “summer house,” although it’s only 9 feet in diameter – was erected at a home in Natchez, Mississippi, called Montebello. The house later burned down, but the gazebo, unharmed, was taken apart and shipped to Irvington-on-Hudson, New York, where it was erected beside a pond on an estate called Rochroanne.

In 1927, when my grandfather was 7, my great-grandparents purchased the estate and renamed it Grey Towers. For fifty years, the gazebo overlooked the pond at Grey Towers. My grandfather and his siblings grew up with the gazebo, as did my mother and her siblings. In the late 1970s, my grandfather removed the gazebo to his home in New Hampshire, just before I was born. I, too, then grew up with the gazebo, which perched on a hill behind his house, overlooking a rolling meadow and clear brook where my siblings and I caught minnows and beavers built dams. My aunt and uncle were married in front of the gazebo; a photograph of my extended family has us posed, smiling, in front of the “summer house” celebrating my grandparents 40th anniversary.

My great-grandmother in front of the gazebo in an undated photograph,
probably in the 1930s.
My family in front of the gazebo in 1988.

I don’t want to digress too much but growing up was not easy for me. I had a complicated and fraught relationship with my father. I began suffering from – at the time – undiagnosed and untreated depression around the time I was 12, but even prior to that, I had a very difficult time. Our annual summer pilgrimages to New Hampshire – during which my father stayed home – were one of the (if not definitively the) brightest spots in my childhood. My grandfather was loving and fun, and provided me with the positive, affectionate male attention I desperately needed. We would often see my aunts and uncles while there, and they also showed me love and were interested in me and my life. I was especially close with my grandmother, with whom I shared an indescribable bond. I was her first grandchild and she made me feel special, important, something I craved more than anything.

Our summers in New Hampshire were filled with games, laughter, dancing, swimming, tractor rides, church fairs – everything a perfect summer childhood should have. For ten days I was carefree, happy beyond measure. My mother was happy, spending time with her parents and siblings. My sisters and brother were happy, unfettered, blithe. Life was truly good.

One of my favorite activities with my grandfather was “picnics in the gazebo.” A picnic lunch was packed – peanut butter and jelly sandwiches (when I was little, my grandmother made them; as I grew older, I helped), Fanta or Tab, potato chips. My grandfather, my sister, and I would gather in the gazebo, chatting, eating our lunch, my grandfather gently teasing us. These were halcyon days, and the moments spent in the gazebo typified the peace and beauty of those times.

When I was 14, my grandmother died on Christmas Eve. My world went into a tailspin. We did visit New Hampshire the following summer and I cried almost the entire time. My grandfather hastily remarried, lonely and lost without the love of his life. His new wife did not want to live in the home he’d made with my grandmother, so they sold the house, the land. I didn’t get to say goodbye. As I write this, thirty years later, I feel tears prick at my eyes. To this day, I dream of the home – which we called “The Farm” as it had been a working farm in its original iteration – and in my dreams I wander through the house, sobbing inconsolably. I wonder sometimes if I don’t haunt the house in my dreams. I stroll through the rooms, reliving memories – here is where my sister and I slept side by side in twin beds, here is where I cuddled my grandmother in her canopy bed, here is where we played backgammon with my aunts and uncles, here is the barn where we unearthed relics from my my mother’s childhood. And here, in the backyard, is the gazebo, still ringing with the laughter of two little girls picnicking with their grandfather, most beloved of all men in their lives.

There was another house, a lake house, where we often spent day times swimming and, if the Farm was full, would stay. One bedroom, one bathroom, open ceiling, no privacy, but still – happy. Full of love. Sadly, my grandfather left that house to his new wife when he passed away in 2012, and she to her children when she died. Without a word to any of us, they sold it. Now, in New Hampshire, there is nothing left for me of my most cherished childhood memories. I look the houses up sometimes, on Google Maps or Zillow. I wonder what the new residents have done with the interiors. In my dreams, they stay the same.

In 2019, we moved to Pennsylvania from Seattle. We did not have the furniture to fill our new home, but serendipitously, my aunt and uncle in Connecticut – the same ones who married in front of the gazebo – were downsizing and moving south. And they had many pieces of furniture from the Farm, which they offered to me. I gratefully and emotionally accepted, and now the same canopy bed in which I snuggled my grandmother occupies a room in my own home, the velvet couch on which I sat and paged through a book of nursery rhymes lends its elegance to my living room.

One day, nonchalantly, my aunt and uncle asked if I was interested in taking the gazebo.

Unbeknownst to me, when my grandfather sold the Farm, they removed the gazebo to their own home and had had it in storage ever since. And now it could be mine. Now my own children could grow up with it, a representation of beautiful childhood memories, a family heirloom passed down through four generations. I accepted, gratefully, happily, excitedly. And that’s where Lower Merion Township comes in.

(to be continued)

A Funny Anecdote

Because I can’t be miserable 100% of the time.

So after surgery, as I mentioned, I had a catheter in. I’ve had catheters before but for some reason this one was particularly irritating and made me feel the urge to pee nonstop, which is very unpleasant! If you’re not familiar with a catheter, God bless. It’s a rubber tube that goes through your urethra up into your bladder to drain your pee so you don’t have to go to the toilet. It is especially helpful after a surgery like this because apparently some people have difficulty voiding their bladders after genital surgery because of the swelling.

In order to be discharged, they needed to reverse fill the catheter with 300ccs of saline, remove the catheter, and I then had to pass at least 100ccs of saline back out to prove my bladder was good to go. As a side note, Google informs me that the average human bladder maxes out between 300 and 550ccs of fluid.

The nurse was wonderful but as soon as she started I was like, “Okay my bladder is already full, this is not going to work.” I had been telling everyone my bladder felt super full but they’d all checked the catheter and been like, “Everything is working fine!” so I assumed I was just being a weenie. But again – I’ve had catheters before and never felt the urgency I did this time.

So she keeps filling. One huge syringe… I’m wincing. TWOOOO huge syringes… I’m squirming. THREEEEEEEE HUGE SYRINGES… I was like, lady, you best stand clear when you remove the catheter because I am bolting for the bathroom. She finally finished and was off like a shot. Ran to the toilet and started peeing in the hat (that’s the creative name they use for the urine collection device in the toilet, because it looks like – you guessed it – a hat).

After 30 seconds or so she asked, “Are you doing okay in there?” “Yes,” I replied, “Still peeing!”

When I finished and triumphantly left the bathroom I had almost filled the hat. SIX HUNDRED CCS OF FLUID. Double what she had put into me and 50ccs over the supposed “maximum” a human bladder can hold! Within the hour I was back in the bathroom peeing another 300ccs!


  1. Something was definitely up with my catheter.
  2. I am a champion pee-er.
  3. I would like my extraordinary bladder control and capacity acknowledged and rewarded. Thank you.

Rectocele Repair/Hemorrhoidectomy Update

I am overdue for an update and this one is a hard one to write. Let me say at the outset, everything is fine – just not what I expected.

The surgeries went just as they were supposed to. I’ve never had a surgery that long before – three hours – and I highly recommend it! Usually they wake me up from anesthesia and I feel like I just went to sleep. This time I felt nice and rested! It helped too that I was inpatient, as I was allowed to relax and doze while they found me a room.

Time in hospital wasn’t great. Nothing to do with the hospital – the nurses were phenomenal, I had a private room, and it was surprisingly quiet. But I had a catheter taped to my left thigh and an IV in my right hand so getting comfortable wasn’t possible. The pain initially was primarily cramping and pressure, as well as an overwhelming urge to pee, but that was caused by the packing and catheter. Those came out on the second day and I immediately started feeling better. Unfortunately, around the same time, the long-lasting anesthetic the doctor injected for the hemorrhoidectomy began wearing off. By the time I made it home, I was pretty uncomfortable around the rear, with feelings of pressure and burning (there was also packing back there that had not come out).

My doctor told me key was not to become constipated, which is easier said than done when you have IBS. I faithfully chugged Miralax and Metamucil… and chugged… and chugged… nothing. By Sunday afternoon I was quite concerned as he’d told me not to go longer than 2 days without moving my bowels, and the last time I went was Thursday afternoon.

Managed to talk to my GP as well as the on-call doc (and eventually my own surgeon) and the recommendations were keep taking Miralax, try Dulcolax, try mag citrate. I tried all of the above and finally Sunday night began having diarrhea. At the same time the anesthetic had worn completely off so my butthole felt like it was on fire 100% of the time. I was sent home with 10 Dilaudid pills but they’re an every 4 hour medicine so they didn’t last long. It’s a point of pride for me that I never finish painkillers but there’s an exception to every rule and I’m down to one Dilaudid at this point and have emailed my doctor about more. I find it embarrassing to ask – I don’t know if it’s because I don’t want him to think I’m an addict or because I’m ashamed that I’m not stronger.

Anyhow sorry this is a little disorganized. So the rectocele really isn’t bothering me much at all. I periodically (no pun intended) have some light cramping akin to menstrual cramping and I’m bleeding but nothing I can’t manage. I have an external stitch (or two? No clue) similar to an episiotomy stitch so obviously need to be very gentle with the area but it’s not a constant pain. Just a dull ache.

The hemorrhoidectomy on the other hand – hoo boy. I had always heard that hemorrhoidectomies were absolutely brutal but having been through many brutal things that are supposed to be “the worst pain you can experience” I was not any more concerned than normal. Friends – it’s brutal. BRU. TAL. My butthole feels literally as though someone is holding an open flame to it. At the same time, it also feels as though something is pressing it – hard – from the inside, although I can ASSURE you that after over 24 straight hours of diarrhea, nothing is. Sitz baths help but only so much and for so long. No position is comfortable. If I try to do anything, even walking around my house or showering, for longer than a few minutes, I begin shaking from pain and exertion.

Friends keep checking in on me to ask how I’m doing and I keep telling them, “Horrible.” I am an optimist with a high pain threshold so this is the first time in my life I have been recovering from something and not had a chipper, upbeat attitude and good news to share. The mornings always feel slightly better than the day before but by the time early evening rolls around I am in agony and having a hard time coping.

So that’s basically the update. I am truly sorry, and for some reason embarrassed, that this isn’t a cheerful, comedic, positive post about my recovery. I hope those are coming soon. Thank you to eternity for your love, patience, and kindness. It will not be forgottten.

Surgery Updates

Okay so I had the cyst excised this morning. I hated it. I don’t know why, God knows I have been through worse. But everything from the position (lying on my stomach with my head turned sideways) to the anesthetic (multiple shots in my scalp) to the sounds (crunching) to the smells (burning) – horrible. No pain but by the time I was done I had the shakes. I did look at the cyst, which was pretty cool to be honest. Anyhow I’m glad it’s over!

Before I did that, I had my pre-surgical consult at Lankenau. I really like the doc who will be doing the rectocele surgery. He seems competent and we laughed about some stuff and I felt comfortable with him.

Turns out the procedure is inpatient, which I didn’t realize. I have never had an inpatient surgical procedure before. (Well, my emergency surgery for my ruptured ectopic might have been, I can’t remember. But not a planned one.) I haven’t met with the doctor doing the butthole surgery (yeah, that’s what I’m calling it) yet for a pre-op so I won’t have details on that. This will all be about the rectocele repair. This doctor’s name is Dr. Berger.

The procedure for the rectocele repair will take around 40 minutes, during which time he will go in and remove the excess skin that has been stretched. Here’s an illustration so you can see what I mean:

Then he will stitch me inside and presumably dust off his hands, nod approvingly at his work, and bid my vag a good day, sir.

I will have packing in my vagina to keep pressure on the stitches as well as a catheter, They’ll keep me under observation overnight and then take out the packing and the catheter the next day and I should be cleared to go home mid-morning. Dr. Berger says the pain will be about the same as with episiotomy stitches – which I never had to have, but which as a doula I am familiar with. It will be important to manage the pain without constipating me, which will be a challenge. 😬 I will probably have bleeding for 4 weeks and also can’t have sex for that amount of time.

I think that covers it as far as the info I have so far.

It’s funny, after I posted my last blog I thought, maybe this is too far. Maybe I should keep this to myself. I want to help other people but maybe the people in my life just don’t want to know this much about what is going on with my nether regions.

Since then I had one good friend comment on Facebook that she was sure this info would be helpful to others facing the same thing, and another friend reach out to me because she has been diagnosed with metastatic breast cancer and went through my old blogs from when I had cancer and could relate to them. So I feel like the universe is saying to press on.

Keep me in the light, friends who are reading this and aren’t put off by my openness. I am so grateful for you. ❤️

Upcoming Surgeries – Cyst Excision, Rectocele Repair, Hemorrhoid Removal

The saga of my bizarre and complicated body goes on.

Thursday I will be having a small cyst excised from my scalp. No big deal, I don’t even have to go under and I can drive myself home afterward. Not excited about it, but not too nervous.

Next Friday, the 3rd, I have a dual surgery scheduled and I am writing about it because I can’t find a lot of first-person accounts online and I really wish I could because I AM nervous about it. And also it’s not the type of surgery you bring up in casual conversation, which means I have basically not told anyone about it, but it’s a serious surgery – I have to go under for it. So this will be my introductory blog on the subject and then if you want to know more you can read the follow up blogs on the procedure and recovery.

Ever since I can remember, I have had jacked up digestion. Then during chemo I had c diff not once but TWICE, and since then have had IBS. So my whole digestive system is a mess. Add to that two full-term pregnancies and you just have a real train wreck.

One of the issues is a rectocele. I won’t get into all the specifics of the problems it causes (you have Google), but here’s the brief definition from the Mayo Clinic:

A posterior vaginal prolapse, also known as a rectocele, occurs when the wall of tissue that separates the rectum from the vagina weakens or tears. When this happens, tissues or structures just behind the vaginal wall — in this case, the rectum — can bulge into the vagina.

I would love to indent that to set it off but WordPress has completely changed the way you format blogs since the last time I posted and I can’t figure out how to. Sorry.

Anyhow I have been putting off rectocele repair surgery for a LONG time for a lot of reasons but over the past year I’ve had not one, not two, but THREE thrombosed hemorrhoids and the theory is the rectocele may be contributing to them. Don’t know what a thrombosed hemorrhoid is? You’re so lucky! I had one for my birthday last year. Here’s the good ol’ Mayo Clinic again:

If blood pools in an external hemorrhoid and forms a clot (thrombus), it can result in:

  • Severe pain
  • Swelling
  • Inflammation
  • A hard lump near your anus

YAY! I can 100% confirm the severe pain and can also inform you that the first one I had was the worst one and it lasted nearly 2 weeks because I am an overachiever.

So I’m finally getting the rectocele repaired, and at the same time, I am getting extra skin removed and any visible hemorrhoids repaired/cauterized. I don’t know all the details to be honest with you, but I will be finding them out (presumably) at my pre-op consultation on Thursday (right after I get the cyst removed). And then I will be sharing them with you.

All this goes to say that yes, I am continuing my journey toward being bionic. And please keep me in your thoughts over the next two weeks.

The Wonder of Sleep

Hello. Did you wonder where I was?

As usual, when I blog, I have a thing going on. The thing is “trying to undo years of chronic insomnia.” It’s now 4:05AM. It made me wince to type that.

Maybe another post if I feel like it I will get into the long and sordid history of my insomnia but all that really needs to be said for the purpose of this post is that I have been taking Trazodone, a mild prescription sedative, to help me sleep for probably 20 years. The only times I was off it was when I was pregnant, at which times I was advised to “try Benadryl” for “occasional sleeplessness” and during which times I basically slept whenever and wherever I was able, and thank God I wasn’t working a regular office job because it was often during the day.

I have two different types of insomnia. First, it is very hard for me to fall asleep. It can take me anywhere between half an hour and two hours after I lie down in bed before I drift off. And two, I am a light sleeper and if I am awoken during the night I cannot fall back asleep.

I am an excellent napper so all this might be okay if I could sleep, say, 1am – 3am, 5am – 9am, and then 3pm – 5pm. And if I was a hermit living off the land and off the grid I probably could, but that is not the way life goes.

I am now seeing a CBT-I for my insomnia. That is a psychologist specializing in Cognitive Behavioral Therapy for Insomnia. One interesting thing to note is that my typing is just terrible at 4:12am and for some reason autocorrect does not seem to be enabled in WordPress, so it’s taking me a very long time to type this. I said it was interesting, not related.

I’m currently on a “sleep prescription.” Here are the rules:

-I am to sleep only 12am – 7:15am.

-(I cannot figure out how to bullet this list gd it.)

-I cannot at any time during the day lie down in bed.

-I cannot nap.

-If I lie awake in bed for more than 10 – 15 minutes, I am to get up and do something (hence the writing).

-No Trazodone.

-I have to keep a chart that is a record of my sleep.

I think that’s it.

It sounds fairly simple and the first two nights, in spite of Julian snoring and dogs barking it wasn’t too bad. I averaged about 6 hours of sleep and felt okay.

The thing about sleep loss is that it’s cumulative. (I say this as though it were a fact but actually I have no idea. I’m just basing it on my experience.) The third night (yesterday night) Julian snored and apnea-ed so much that I was awake basically every half hour between 12am and 2:30am, when I finally sent him upstairs to the guest room. Then I slept fine until 6 when a VERY enthusiastic bird woke me up. (“TWEET. TWEET. TWEET.”) I was DESTROYED yesterday. Like irritable, nauseated, panicky, unfocused, just a real mess. I decided to remedy this by going to bed at 10:30 last night. Is that my sleep prescription? Ladies and gentlemen, it is not. Did I sleep between 10:30 and 12? “Fitfully” would be the word I would use. The dogs barked at 12am and I let them out and went back to bed. I continued to thrash about and sleep on and off until 3-something at which point a thunderstorm started and then the dogs started barking at that. I got up and played on my iPad a bit and now I’m typing this which has suddenly gotten VERY boring so maybe I am getting tired? 4:23am.

Last two things I wanted to say that seemed important when I thought them.

One, it’s weird to get up and do something in the middle of the night and feel as though you have “permission” to do so. Typically when I am tossing and turning I am also chastising myself for being awake and wondering what is wrong with me. If I look at my iPad or phone or get up I am being “bad” and should be trying to sleep. This is a unique and somewhat freeing feeling which I think I would enjoy more if it weren’t for the sleep deprivation induced-nausea.

I can’t remember what the second thing was. But I am supposed to be up in less than 3 hours and coaching Con’s baseball team at 11.


Easter Egg Stuffer Ideas, COVID-19 Edition!

Normally I go out and browse stores to find little tchotchkes to stick in the kids’ Easter eggs, but this year that’s obviously not in the cards, so I browsed around Amazon and found some cute non-candy items, and thought I’d share in case anyone is in a similar position! I can’t officially vouch for any of these items yet because I JUST ordered them but hopefully they’ll work out.

Two VERY IMPORTANT notes. First, many of these items come in bulk, so if you have fewer than 12 kids, maybe go in on some of them with neighbors and friends. And second, you’re going to have to hop to it if you want these in time for Easter – Amazon is prioritizing shipments to get necessities out first.

Have other great egg filler ideas? Please share!

Love in the Time of Corona

I guess I’m a crisis blogger. I mean I often think about blogging, but it only seems to happen when the proverbial shit has hit the proverbial fan. And here I am again.

Monday was nice, wasn’t it? “We can do this! Let’s educate our children! Clean our house! Telecommute! Make a family dinner! Full-steam ahead!” I think by Wednesday I had started stress-eating, and I haven’t stopped. A friend posted, “Remember the ‘freshman 15?’ I’m working on the ‘COVID 19.'” So at least I know I’m not alone.

My body’s also trying to tell me I’m depressed. I’m having trouble getting to bed before midnight or 1am (so Seattle friends, feel free to holla at me after you put your kids to bed!), and having trouble getting up before 10… or sometimes noon. I don’t feel the typical mental anguish I do when my meds stop working and I spiral, so I guess this must be what they call “situational depression.” I told Julian I feel almost bipolar – I go from feeling like we’ve got this nailed to feeling absolutely hopeless within minutes. It’s an emotional roller coaster for sure.

I’m doing things to keep myself positive, though.

  • Writing letters to friends and sending them via snail mail.
  • Making dance play lists on Spotify.
  • Cross stitching.
  • Going for walks.
  • Talking to neighbors when I get the mail (minimum 6′ distance, don’t worry).

And I want to start doing other things, too. Like a self-portrait series. And designing greeting cards and selling them on etsy (I already did a couple!)

What are you doing for self-care? And do you want to be my pen pal?

Sometimes ya just gotta blog it out.

Well, first of all – still in menopause. Hormones still whack. But a dubious psychic told me Saturday night that I’d have twins in 2 1/2 years. So, you know. Stay tuned for that.

I was scrolling through Facebook today when I came across this outstanding article: A Woman in China Tried to Cure Her Cancer by Swallowing Maggots Oh yeah she did! Because “someone told her” it would work. I read the article, while trying to stop my eyes from rolling out of my head, but here’s the thing – although I’m sure most Americans are like, OH MY GOD THAT IS NASTY WHAT THE HELL WAS SHE THINKING, it is no worse than some of the other wacky, stupid sh*t people have suggested I try to deal with my cancer. Like this bananas “cure.”  Or of course let’s not forget the “doctor” who “blew the whistle on chemotherapy.”

In a twist of fate, mere hours after I read about ol’ Maggot Snacker and mused on all the cancer misinformation there is out there, I saw a post about thermography being the new “gold standard” in breast cancer diagnosis, better than mammograms. I was immediately intrigued, in spite of the web address (Dr. Jockers? Uhhh…) A brief Google search turned up an article by the FDA regarding the fact that thermograms should NOT be used in place of mammograms and an NIH study that indicated they are less effective than mammograms but can be used as adjunctive diagnosis tools. Bummer. Nobody hates a mammogram more than this large knockered lady, believe, but I’d rather have a million mammograms than cancer again. I posted these links to my friends post, and her very kind reply was one I have come to expect, much as I loathe it: that the FDA is not looking out for us, they are following the money, that they have a hidden agenda (I guess they prefer squashing boobs to heat scanning them?), that ethical healthcare practitioners are few and far between, and that in other countries with better healthcare systems than ours, thermography is treated as equal to mammography. I asked how she explained the NIH study, and a friend of hers chimed in with a quote about how studies now are unreliable because they are done only to support (you guessed it) the FDA/the government. I also asked which countries specifically believe thermography is equivalent to mammography but she has not seen my question/not replied yet.

Guys, I don’t trust the government any more than the next guy. I think our healthcare system is jacked. I hate that so many things follow money, and I have a HUGE problem with Big Pharma. But at the same time, there are things that don’t make sense to me. If thermography is so great, why wouldn’t the FDA/other healthcare agencies be investing in that and jacking up the prices? Why wouldn’t insurance be covering it (it doesn’t) at a premium, like they do with everything else? Are we really to believe the government wants us not just sick, but dying of cancer?? That they like the additional (small but real) risk of cancer presented by the X-ray technology in mammograms? I just – I can’t buy into that. I don’t think my oncologist likes me sick. I don’t think my amazing, kind-hearted brother-in-law is becoming a doctor for the express purpose of making money by deliberately keeping people unhealthy. And I have to wonder if the people who believe these things actually personally know any doctors. (And I don’t mean Dr. Jockers – whose house, incidentally, you can apparently get a tour of on YouTube. Cool!)

Whenever people post about or message me with junk science – and make no mistake, this is junk science – with regard to cancer, it both personally offends and outrages me. The spread of this misinformation is so pervasive and SO DAMNED DANGEROUS that I just don’t know what to do or say about it. I pray none of the women in my life are diagnosed with breast cancer in their lifetimes, even as I know that is an impossible wish. I celebrate when there are REAL SCIENTIFIC BREAKTHROUGHS – like the one detailed here by CNN, wherein the big, bad, malicious FDA has approved the first immunotherapy treatment for breast cancer. (I do not know how they will continue to thrive as an organization without all that chemotherapy money, but I guess time will tell.)

I guess my plea is this: Please just research. Ask questions. Ask not just Facebook and Dr. Google, but real doctors, real nurses, friends, colleagues, and survivors. Ask everything and assume nothing. Advocate for yourself, always. Stay on top of your screenings. And don’t spread cancer diagnosis or treatment news or rumors as gospel unless you know they are corroborated and vetted and safe. Because someone is looking at you as an an intelligent advisor – maybe even as an expert – and you don’t want to be the reason they make a decision that could result in their death.

Unless you’re the FDA. Then I guess you want death and discomfort for all.