Friday, August 11, 2017

The Thing Living Inside Frankie

Image Source
To preface, "The Thing" is not a baby.
One hundred percent NOT a baby.

Now that that's out of the way, we can move on.

For the sake of easier reading there will be times were the writing of this post is in first person, and times when we flip to us/we when it seems appropriate. This is one of the rare occasions in the many years of writing that there has been swapping, or even use of  "I".
If you don't know who "We" are, and are actually curious, there is an archive of writing available at your disposal right here on the blog (tip: click the hyperlink).
The reason for this, as stated, is ease of reading, because it's about a very important topic.

Some people may have noticed in the last couple of months references to a physical health issue in some of our Tweets, ranging to vague to specific. Until we had as much information as possible it seemed prudent to hold back on writing about it.
Part of the reason for writing about it is that when there first started to be issues we would Google them, find threads, forums, groups, where people would be describing the exact same symptoms we had. Some men, some women, people of all ages. Yet they never returned to say what happened when they [finally] went to the doctor. People would just add to their threads saying they had the same issues. It was frustrating. Not that the internet could have done a proper job of diagnosing the issue anyway. Still, when a person is at wits end trying to get a ballpark estimate on the possible health problem...forums seemed to offer no help.

The symptoms in question were really noticed, fully, at the end of January of this year. They included: extreme fatigue, dizziness, pain in the right abdomen just beneath the rib cage, and in the matter of about 4 weeks a 15 pound weight gain.
Aside from insurance issues, the other barrier to seeing a doctor immediately was that that's not really how we were raised. On the farm you generally didn't go to the doctor unless you were losing a serious amount of blood, or an appendage. The only times we really recall being in a doctors office are when we had allergy testing (at about the age of 6), when we ran our thumb through a table saw (at about 13. It was the cool thing to do.) and then after the car accident. So if you're not feeling well...well that's no reason to go to the doctor, sillypants. So we mostly dismissed it. Came up with other reasons for feeling the way we felt.

The first thing people should know is that I work hard to maintain what little healthy physique this body displays. Aside from [what some feel massive] steady/unchanging amount of alcohol consumption, the diet is stable. A lot of fresh fruits and vegetables (and in the summer garden fresh from our own garden), whole foods, fresh meat products, minimal junk food or processed foods, mostly home-cooked (gotta use that culinary arts degree for something), low-carb (no white bread, no pasta, minimal rice, etc). Lots of fucking apples, cabbages, tomatoes, and the like. Like everyday. I also regularly workout 4-5 times a week for 45-90 minutes at a time (depending on if it's a Kettlebell day). And as stated, no change in alcohol consumption.

So this 15 pounds was a concern, especially when paired with the other symptoms. Call it a perk of being obsessed with paying attention to one's body and how it functions.
Turns out it was a good thing.

We had inquired with a woman at the gym sometimes in April, who is there pretty often, as we are, about tips to kick that stubborn weight issue. This was before any doctor appointment.
One of the first things she asked was about age, and then immediately attributed it to that. "Yeah. I know. The metabolism slows down the older a woman gets. But 15 pounds in a matter of weeks?". She wasn't overly helpful, but it wasn't shocking. We were just sort of querying all manner of sources. Plus, in that early stage of the end of February/beginning of March we hadn't really put the other symptoms together with this issue. Even by April there was only a vague feeling that they may be connected. Truth be told they all did just seemed things that happen when you get old (aside from the pain). And most people backed up that theory with their perspective on it.

We knew we'd eventually have to go the doctor. The problem with the pain increased, the exhaustion made going to the gym a tortuous chore and in addition to it all we were feeling depressed (but, not in a way we recognized well. A new feeling of depression, somewhat linked to other personal issues, but it felt different). I would have went to the doctor sooner, but our household found ourselves without health insurance this year until May, so it was a waiting game.
June 2nd we posted to a select group of FB friends:
"We don't usually go hypochondriac...but...for the past 6 months (the earliest we can recall) we've been having intermittent pain in part of our abdomen (right where the kidneys and liver reside)..."

June 14th we finally made it to the doctor appointment we had scheduled shortly after that night.
They did a complete physical, blood work up and gynecological exam. Ran through all the usual questions. Inquired about different things in life (changes, stress in a relationship, etc). The doctor didn't bat an eye at the alcohol consumption reported; and yes, we are pathologically honest with our doctors about how much we drink. Nothing good comes from keeping stuff from your doctor, especially in cases like this. We gave the most complete details on our health, right down to bowel movements and other strange aches, because by this time we had done enough researching trying to figure out what was wrong it was determined that if could be nearly anything, and it might take one overlooked symptom to be the link to the diagnosis.

The physical went fine. Nothing found. The gynecological exam and pap came back clean. The blood work came back the same day and we passed with flying colors - except for a pretty giant Vitamin D deficiency that is common in places where half the year people don't expose their skin to the sun. Take Vitamin D, people. It has so many physical and mental health benefits. So many people experiencing depression and mood issues could benefit from Vitamin D over some pharmacrap. Look it up. Vitamins are important, especially ones hard come by. The weird depressed feeling we had improved pretty significantly after a few weeks of Vitamin D - plus they come in fun gummies. It's like having candy for breakfast!

But I digress.

The day after the doctor appointment we ran a local 10K feeling confident about our health - despite the lingering pain: the enzyme panel that measures kidney, pancreas, and more importantly, liver function, was all normal. A fact that anybody we told, who knows how much we drink, felt hard pressed to believe. They'd kind of cock their head to the side and exclaim "Realllyyy...??"
"Yes. Really.", we'd reply derisively.
The red and white blood count was "on fleek" (hahah. How dare you use that in your writing!).
No cholesterol issues, and to that point no high blood pressure. It really made us feel like going back to the doctor, who questioned our healthy lifestyle, and sticking our finger in his face.
It should be noted, also, that when I discussed that 15 pound weight gain with the doctor he said the same thing as everyone else: "Your metabolism slows down as you get older." To which I replied: "But 15 pounds in just a few weeks? By that measure I'll be 300 pounds by winter." He then agreed, yes, it is unlikely to be due to old age. Fucking doctors, man. The doubt about what you're saying, about your own body and lifestyle. Like they know more about the body and life you live in.

The blood work was excellent, so the doctor scheduled an ultrasound to try to get to the bottom of the symptoms, especially that pain.
June 28th we were getting our very first ultrasound.
They warm the jelly and it feels like some gently cumming on you, and then they play in it with their special wand. When done you're handed a washcloth to clean it all off with, like that charming young man you once met.
Not even gonna apologize for that graphic interpretation.

It was about a week before they got back with the results.

Did you know theses days you can see almost everything most health providers post to your chart, almost right away via an online app/portal? It's really cool. Unless you get those results at midnight in the middle of Fourth of July weekend.

There were all sorts of measurements for organs, and then just "gallbladder appears normal". It was midnight, we were at a campground, so we spent the rest of the evening looking up the normal measurements for organs: Liver, common bile duct, right kidney (no mention of the left; what is a renal pelvis?!), pancreas (wait, what does "focal hypoechoic area mean?!). Some of the measurements seemed an issue.
"Further evaluation is recommended. MR or CT would be helpful"

Great. We got this just after midnight on Saturday. There was no one to call until Tuesday.

When we finally got to talk to a nurse she relayed the doctor's message that he'd like to order a CT (or CAT) scan.

July 7th we were sitting in a waiting room full of old OLD people in the cancer center of one of the large local-ish clinics drinking measured amounts of oral contrast mixed with water. It was really a pretty quick procedure after the two hours of drinking the mixture, and of course we made jokes with the nurse the whole time.

"You're going to feel like you peed yourself when I inject the contrast into your veins", she said right before the final scan.
Seconds after it was injected we told her "Oh my god. I'm not entirely sure I HAVE'T peed myself". Laughs all around.

It wasn't too long before the results came in. One of the perks to living in a low-population area is the speedy response to medical testing, I guess.

This one dropped a few things off the search list. The liver was fine (again, people were shocked). Unremarkable, as a matter of fact. The spleen and adrenals. Everything...but the pancreas.
They wanted to double check the ultrasound with an MRI. We could hear the sounds of cash registers and emptying coffers.
But. What is this? At the bottom of the report. This is something new.

"In the left pelvis there is a complex primary cystic mass which measures 7.2 x 10.6 cm. This contains internal septations, which are partially calcified. A more solid component is present along the more anterior and inferior margin. This appears to originate from the right ovary. The left ovary is unremarkable." and then in the recap: "Complex right adnexal mass which appears to be ovarian in origin. This contains both cystic and solid components. GYN consult is recommended.


They scheduled the MRI for the pancreas issue.

Our favourite grandfather passed in December of 2009 of pancreatic cancer, so this put a little scare in some people. Father was going to be in the area, so he volunteered to be there for us the day of the MRI. We had had MRIs before for spinal issues, so it wasn't anything new. We knew pancreatic cancer to be a cruel, but swift, cancer. But the day came, it was mostly uneventful. A nice time to spend with Father, over cookies and coffee at a local cafe, catching up on life a little.

In the meantime the nurse called to schedule an appointment with a the gynecological specialist. It wouldn't be until August 1st because we were heading out of town for a 10 vacation in Canada soon, a yearly pilgrimage to the city we love so much (that so many people dislike) for the annual Fringe Fest and to spend time with Fabulous People (or at least the last remaining of the happy troupe from way back in the day). and to go to hot yoga, and day drink.

The MRI came back, for the first time we had to call and ask about why it hadn't been put in our chart yet. The nurse said that the MRI came back fine, nothing much of note (though when we looked at it it said there were two small lesions on the liver. Should probably keep an eye on that), but to be sure not to miss that appointment with the specialist next month. Later we got a call from the other nurse saying everything on the MRI was fine so there was no need to see the doctor. We pressed her, saying that's not what we were told that same morning by Nurse A. She looked further and said, oh, yes, absolutely go to that appointment.
How irritating. If I hadn't taken it upon myself to inquire about the results earlier that day all I would have had is this woman saying everything is fine, go about your life.
This is why you should ALWAYS be proactive in your healthcare. Make calls. Ask questions. All of the questions. Ask them twice. Just because they have the education and the degrees doesn't mean they are perfect. Don't be a statistic of negligence.

Fast forward to August 1st. The day after my 38th birthday.

The nurse takes me into the examination room and gets all of the particulars (she clearly has no idea why I'm there). When she gets to the alcohol consumption portion and I throw the number (in mL) her pen stops.
"Wow! That's a lot!" she exclaims.
"Yes. I know." I reply flatly.
" you think you have a problem?" She asks. She is the first doctor to ever ask that. And we do, in fact, have fairly regular doctor appointments. Every two years at least.  Little does she know, up until recently, the amount of alcohol she was struggling to understand was just from two to three nights of weekend drinking.
"No. I don't think I have a problem." I say.
"Can you face the day without a drink?" she asks, searching for an obvious sign of alcoholism.
"Absolutely. As a matter of fact I wake up every morning thinking 'I don't think I'll need a drink today'. And then life happens. A day happens."
I follow it up with pointing out the geographical region she shares in living with us, and saying it's not unusual given the specific coordinates.

She gets all the info she needs, leaves the room and the doctor comes in.

She asks some cursory questions before getting to the meat of it. Checks the vitals, asking about reported symptoms, asking about symptoms I hadn't mentioned because they have become such a part of my life. Backpain? Sure. I broke my back and have a degenerative spinal issue, I say. Though later I'll realize that, while I try to maintain the pain with exercise, diet, and alcohol, I had found myself reaching for the Ibuprofen the last few months, just thinking I'd been overdoing the Kettlebell workouts, or perhaps pulled something.
Digestive issues? She asks.
That's a hard one too. At a young age, before it was really a thing, Mother had us get allergy testing, for whatever reason, so we know have allergies to corn, wheat...pretty much every grain but rice. And a lot of other things to boot.
And because we've been fairly successful at maintaining weight after that one hundred pound weight loss, all thanks to a low-carb Atkins-type diet, which requires keen observation of your body's reaction to certain foods as you add them in, we know that the times when we splurge with a burger, or a bit of pasta, our digestive ain't pretty. But sometimes nothing happens. It's literally a crap shoot. But since we've had this issue forever, the slight increase of problems turned out to be a symptom.
Symptom after symptom, she kept asking questions. Do you find yourself feeling fuller faster than usual lately? Who knows? I don't eat much to begin with, not really. But I could always eat. (Being vigilant about diet, and having a historically poor relationship with food, means sometimes you don't know if you're actually hungry or not. But that's another issue, and is more nuanced that we have time for here).
She said that next she'd do a pelvic exam, and then we'd talk about "why you're here".
She was totally burying the lead.

She finished up the pelvic exam. "Everything appears to be normal", she says.
Duh. We just had an exam less than two months ago.

She sits at her little desk, while we sit on the examining table, naked from the waist down, a little paper sheet over our lap.

She turns to me and says "So, you're here today because they have found a sizable cyst on your ovary. About 10cm across." She forms her hand in an weird circle, shows me, and says "it's about the size of a babies head".

Now. I'm not sure why this was a surprise, other than, despite reading it in the CAT scan report we didn't really think about it the measurement/size.
First, it's in cm. And we are American. What is a cm, even? (Joking. Yes, we know what a cm is, even it's harder to visualize than an inch).
Second, the couple of times we thought about it we pictured some web-like structure. Not a fucking large grapefruit lodged in our pelvis.
So when she said "It's about the size of a babies head", my hand flew to my mouth and I shouted "Are you fucking kidding!?"
She thought that was funny. She probably doesn't have many cussing mouthy patients.
"Like, a baby-baby head, or like, a fetus-baby head?", we asked.
"Baby-baby." she replied.

Time and details kind of got weird and sometimes ffuzzy at that point. She started talking about it's complexities, that they were going to have to do surgery to take the cyst out (only 5-10% of cysts require removal [1]), and also take the ovary and the fallopian tube (1/3 of our reproductive system) and how they weren't necessarily sure what ovary it was attached to because when a female lies down the ovaries sort of tuck together towards the back.

"As long as you take the right one", we joked.
"I'll be sure to take the one with the baby head attached!", she joked back.
We were immensely happy that she had such a good sense of humor.
Good character and a sense of humor is what you want from the person who is going to slice into you with sharp instruments.

She immediately sent us for (more) blood work, this time to test for cancer markers (the CA125 marker, specifically, and one other we don't recall), and another ultrasound. This time with a focus on The Thing, because the The Thing wasn't a consideration in the first ultrasound. As an aside they did find two small fibroids, one measuring about 1cm in size. Which are just more small tumors, but completely normal. One thing I learned from research is that cysts in the reproductive organs are highly common, and the only time they become a problem is when they don't eventually pass through during a menstruation, in which case they turn into something like The Thing, and can become cancerous.

So that's that, essentially.

There will one of three surgical outcomes.
1) laparoscopy - that's the nice one. A couple of small cuts WITH LASERS (haha! fiber optic instruments, really, but still), and then they inflate the area so they can put a balloon around The Thing, and then extract it. This is the preferred method with the shortest amount of recovery time, and no overnight hospital stay.
2) laparotomy - this involves a larger linear cut. They'll "open us up", and extract it that way. Bigger cut. Overnight stay in the hospital. Bigger scar. Longer recovery. Less desired. (I'm only booking off ten days for recovery)
3) they make the first incision and see some crazy unexpected shit in there so they close it back up and reschedule the operation with a special specialist/surgeon.

We literally won't know which will happen until we wake up from surgery and see what happened. That sucks.

Aside from the general anxiety about going under for surgery, which was scheduled for the earliest date that fit both my work schedule, the recovery time required, and the surgeons schedule [September 7th]- it's our first time.
To cope with the uncertainty we've just been making jokes (it's our go-to mechanism) about how we never planned on using the ovaries anyway, and other such things. Sure, it's scary. But I have people to deal with that (see, that's a DID/MPD joke 😄)

To get a better idea of how big it is I took the dimensions provided by the last ultrasound and carved a model out of an overgrown zucchini because we had been having a difficult time envisioning it, like really putting context to The Thing.

Fun. Hey? That's roughly the size (it's a couple mm under, but you get the picture) illustrated in the photo. The coffee cup is to provide scale.

So, in addition to the unease about the surgery itself, there's also the risk of it being malignant (cancerous), which is more common with complex masses like The Thing. Guess we can't ever do anything the simple way.
When they handed us the pamphlet "So You Have An Ovarian Cyst" (just kidding, that's not what it's titled), we flipped through it on the back inside panel was the Warning Signs of Cancer of the Ovary.
Checking off the symptoms we have:
Check mark symbol bloating
Check mark symbol pelvic or abdominal pain
Check mark symbol back pain
Check mark symbol enlargement or swelling of the abdomen
Check mark symbol constipation
Check mark symbol feeling tired
         6 out of the 10. Not a great score, really.
13-21% of cysts that require surgical removal turn out to be cancerous [1]

The real concern at the moment is that that giant sack of crap will burst and flood our body will all sorts of madness. This has translated into augmenting our gym activities a bit, and taking a rest from running for while. Which is slightly miserable, but better than being poisoned by The Thing.

But here's where we buried the lead just a little.
This afternoon I called to inquire as to the status of the blood work they took back on August 1st and it came back clear! Which, in and of itself, isn't a definitive "No cancer" - that'll be determined  when the cut the bugger up - but it's a happy hurdle for sure. *releases the balloons*

At the end of it, this tale is meant to raise a little awareness of:
a) of how easy it is to miss a cyst in a routine pelvic exam. It was literally undetected in June during a the pelvic exam. The doctor thought the pain was going to be an issue with the gallbladder.
b) how easy it is to dismiss symptoms as something else, or not necessarily take a slight increase in severity seriously because you're just used to living with it.
c) how you should never let someone tell you the symptoms you are experiencing are because YOU'RE FUCKING OLD.
d) how you should pay attention to your body. Get to know it. Intimately.
That 15 pound weight loss didn't really translate into a big increase in clothing size. We never would have taken anything seriously if it wasn't for how much we pay attention to our body.

Get to know your body, because if you can catch an issue in time then you could save your own life.

Thanks for reading!
[1]  Office of Women's Health, US Department of Health and Human Services

As an aside. If you made it this far. Here's one thing. And this is not to pick on any one person. It's literally been loads of people doing it.
When someone tells you about such a situation, the last things they may want to hear is: how you had a friend who had one and she's okay now, or how much they're going to beat this, or any other such thing. It minimizes the seriousness. It's a lot like saying so-and-so has depression too, and they are fine. Other people experiencing the same thing is not always a comfort to the person experiencing the thing. In this case, you know who hasn't said anything? People who know people who have died from something like this, or in the case of people with mental health issues, all the very negative statistics.
People DIE from ovarian cancer.
According to the American Cancer Society it's the fifth most popular way to die of cancer.
While we are no way panicking about the situation, we have to be realistic, not foolishly optimistic. Because the best preparation for anything, is preparation for everything.


  1. I hope all is well & resolved now. Baby head zuchinnis, be gone!

  2. I hope all is well & resolved now. Baby head zuchinnis, be gone!

  3. I've been off Twitter lately to interpret any tweets surrounding this. I hope all went well and everything is back to norm. Whatever that is.
    Year's ago I had the same issue, although it was only about the size of 5 mo fetus. Had a final scan day before surgery to help determine best surgery option. Went to surgery the following morning. Woke up in recovery, the Dr came by to discuss and informed me that when he went in the cyst was gone. No traces of it. Zero. Nothing. Everything was normal and looked great.

    It's no wonder how amazing (or not) things happen.

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