Dr. Ukropec, Dr. Notte, and Fairy Dust.

Towards the end of February 2014, I started having pain in my lower left side again. Extreme bloating. Very tired. Katie, who had once mentioned she had never seen me cry, saw me breakdown and cry for no reason when we driving to Teds Montana for dinner. I was running to the bathroom frequently and had lower back pain. It was like a urinary tract infection, except I wasn’t having pain while whizzing and I wasn’t running a fever. It felt, again, like a cyst on my ovary had burst.

On Feburary 27^th, 2014, I had my first (and last!) appointment with Dusty Ukropec. Dr. Notte had left and…giving my distrust in general of doctors (see Why I Distrust Doctors) – I wasn’t exactly thrilled, but I was willing to give her a chance.

However, she didn’t even take my temperature (yet suspected UTI)! She jumped right away to my symptoms being a urinary tract infection. I was focused on it being a cyst on my ovary, she was focused on a UTI. She didn’t do an internal. She just pushed around on my abdomen and spent the first 10 minutes of my appointment telling me that Dr. Notte must have had fairy dust sprinkled on him when he was born because he could do no wrong in the eyes of their superiors. Now listen, I was a fan of Dr. Notte, so I didn’t find it appropriate, no matter how much she seemed to be “kidding” – I sensed a very passive aggressive  thread of displaced anger (envy?) toward Notte. Because she then went on to tell me about this time Notte and her worked at some old folks home and all the residents adored Notte and the nurses adored Notte and at the end of their time there, he got a bacon of the month club gift certificate and a plaque and she got nothing! Now, keep in mind, I’m in fucking pain! It takes a-lot to get me to the doctors (see Why I Distrust Doctors!) and now here was my new  “family” doctor – and instead of getting to know MY history, she’s treating me as if I’m her psychologist and she’s complaining about being treated unfairly!

I leave with a script for Cipro that I said I would not fill until the results of my urine test comes back. I go home and realize I didn’t mention that I’ve been getting extremely bloated. So I send her an email and suggest that maybe, because of my mother’s history of uterine/ovarian cancer and because I had a cyst on my ovaries 6 months ago, maybe I should get a CA125 test. She emails me back discouraging (can’t be reliable)  it but ultimately writes me a script to get tested.  I get a call that my urine didn’t test positive for bacteria but it did have blood in it, so now she wants me to get an ultrasound of my bladder and kidneys. Well, I write back asking will this show my ovaries? She says no, she thinks it’s a urinary problem, not female plumbing problem, but since I’m worried about it, she’ll add that to the referral for an ultrasound.

Dusty is so adamant it’s kidney related but I just feel so sure it’s ovarian related – but I start to doubt myself. After all – she’s the doctor. She went to school for medicine. But I never felt she actually listened to me and so I got home and TRY not to focus on the fact I feel terrible, but then I worry that what if something is truly wrong – like it was for my Fran (my mother) and it goes undetected for years? We’re always told to be our own “advocate” yet when we sit in those small doctor offices with some dude or chick who is wearing an white jacket – and try to be our own advocate – we’re told to stop Googling our symptoms, don’t listen to friends or family, and more often than not, don’t even pay attention to our symptoms. We start to question ourselves. And so there I was – caught in the middle of feeling crappy and sure that something was wrong, missing the reassurance of my old family doctor, being told that my symptoms were probably just caused by my hormones (going through the change) – feeling like a freaking idiot but also feeling that I shouldn’t give up on figuring out what was wrong. Making sure this wasn’t ovarian or other female internal junk related – because unlike Fran, if I did have cancer, I knew I would just let nature takes it course. I would not put my body through chemo. If I drink as little as three alcoholic drinks, I wake up the next morning miserable: I’d rather have a great quality of life than a sickly quantity of life. And so I started to request my old records from Doylestown hospital so I could keep track of what was going on…this Dusty hardly knew me. And no one knows your body better than you know yourself. ***looking back in paperwork – the request for ultrasound says I have family hx of cancer but that my menses is normal. The “normal” menses seems to be a thread throughout this journey. I repeatedly tell EVERY doctor that I have not had a normal period for almost 7 years. That I only get my periods twice a year. See, people are NOT listening!!!

The Start Of It All...

It all began on September 12, 2013. I’d been having bad pains in my lower left side all week. I’ve been prone to ovarian cysts so I thought (even though I only have about 2 periods per year) perhaps I had a cyst that had ruptured. 

An odd thing I’d noticed, was that whenever I ate peanut butter (that week, I was on a peanut butter kick: peanut butter on apples, bananas, crackers) I had sharp pains in my lower left side. As a medic, I knew this didn’t seem rational, but my body is not rational anyway. It has so many weird little things wrong with it, I’m thinking my mom may have been given DES when she was young – or maybe that’s just how I am – odd in almost every way. Anyway – long story short – I ended up going to Doylestown ER. Dr. Jennifer White was my doc and for some reason, from the admitting nurse to the doctor, they all seemed focus on kidney stones. I didn’t think it was kidney stones. Other than pain, I had no other symptoms of kidney stones.  I thought it was a cyst that had burst. Or maybe something to do with the peanuts? Maybe I was allergic? 

A cat scan was done and showed a cyst (water density lesion in left adnexa of 17mm diameter (most likely functional was noted on report). No fluid. 

There were no kidney stones. I was given a shot for pain (yay – it wiped the pain right out!). Dr. White thought I should see a GI doc and an OB/GYN. She was totally nice (though I was 100% sure it was NOT kidney stones and had been frustrated that they zeroed in on that). 

I went home with some oxycodone (12 pills that lasted me until the end of July 2014!). I didn’t bother to ask for copies of my medical reports. I should have done that. 

I followed up with Dr. Minissale Jr who is with Central Bucks Speicalists. He had a great bedside manor. He expressed disappointment that my CAT scan wasn’t done with contrast. After being examined, while I was still in the room, he dictated a memo to my Doctor Notte (my family doctor). I wish I would have asked for a copy of that too (I would, but not until much later when things started going wrong). I would have discovered that besides the cyst on my ovary, I also had what looked to be a duodenal diverticulum (this is a pouch on the “pipe” that leads to my intestines). I had no idea about this. After my visit with Dr. M (who advised I see an OB/GYN) – I stopped eating peanuts and my pain slowly resolved. Blood work that Dr. M ran showed I was a bit low on my vitamin B12 and iron and to start taking supplement. I was negative for celiac disease. 

All was pretty well the rest of the fall/winter – aside from this total lack of focus. I wouldn’t say I was depressed, and I was still mostly a positive happy person, but suddenly I found I didn’t want to go out and drink with friends and family. I was working part time at Wegmans and by the time I came home, all I wanted to do was sit on the couch with a bowl of popcorn and watch some behavioral TV (trashy reality shows) and just tune out. I did visit Dr. Notte sometime in the winter…I suggested maybe I needed Adderall – maybe that would give me some energy and help me focus. I hated that I wanted to do a million things but lacked the focus or drive to actually accomplish anything. Dr. Notte suggested I should see a behavioral doctor – he thought maybe I was just really sad over Obama winning and it had sucked the air out of my balloon so to speak. I had laughed. Maybe. Perhaps. I didn’t want to see a psychologist; my experience with counselors has been horrible. There was the wonky eyed marriage counselor who was going to counsel me and my ex – but I couldn’t take her seriously when she admitted she had been divorced 3 times. Anyway, the holidays came and went, and after the start of the new year, I was looking forward to the 2014. I had a burst of renewed energy! This was going to be my best year ever. I was going to write a book a month. Start doing videos again. Rich Zeoli of 1210 am radio had contacted me and asked me to do a weekly spot on his radio show. Radio sucks, by the way, very difficult because it’s live and you can’t “see” your audience. But then, during the month of February, I started experiencing pains in my left side again. And this time it was also in my lower back and right over my pubic bone. No fever though. It felt like a UTI but I wasn’t passing blood and I didn’t have a fever. So I didn’t really think it was a UTI. It was like that cyst was back again. 

After about two weeks, I finally gave in and called the Family Care Medical Center. Dr. Notte had left (which I knew, and was terribly sad as he was the best family Doc I’d ever had – big personality and very much a family man) and I made an appointment with Dr. Dusty Ukropec (she is a female – which shocked the doctors at Doylestown ER who always thought “Dusty was a man.”) and then I spent the month of March in the ER and the month of April visiting doctors…and this is my diary. I’m actually writing this on August 5th, 2014. 10 days prior to surgery to take out all my internal lady parts. I’m panicked I 

A) Have Cancer

B) Will die during surgery

C) Something will go horribly wrong during surgery and leave me with a colostomy or as a paraplegic. 

John says I’m totally fine. Just over reacting. Possibly. Hopefully! I hope I look back at this and laugh – but honestly, even if the surgery goes awesomely well – there is a lot to learn from my journey these last few months. From the awful way I was treated a few times, to the importance of obtaining copies of your own records, to the obscure and at times confusing medical journey – and why is it that I feel no one is LISTENING to me. Do I have to be a bitch in order to be taken seriously? It shouldn't have to be that way. Anyway, with the internet and social media, we…the everyday American who doesn't have elite doctor connections or vast boatloads of money, do have access to something just as powerful: our voice. Our voices, our stories, will help other people navigate through their journey to health. I hesitated to write this because I didn't want to offend or worse, cause medical personal for treating me differently – but shouldn't those in the medical community treat every patient as if every patient DOES have a voice and will use it? I know as a paramedic, I wasn't perfect on every call, but 95% of the time, I treated a patient as if they were my best friend or my favorite family member. The other 5% were frequent drug addicts or drunks or asked me to take their trash out before I wheeled them out the door. 

I’ll be dating these posts as they happened – and luckily I have a 2014 Yearly/daily planner that I had hoped to fill with the ticking off  of my goals of writing new books each month, shooting new videos, etc – but it turned into a doctor visit planner. And once I started getting my reports, I created a binder to organize all my test results and ER visits. Look, don’t leave it in the hands of the doctors – just like everything in life – this is up to you to be in charge of. The more knowledge you have, the more power and control you have. I have no quirky witty way to end this post, so I’ll just leave it with this: if you haven’t already started keeping track of your medical stuff – go forth and buy a big ass binder (or a little one if you’re quite healthy – good for you and your big nose) – some plastic sheet protectors, and some pocket divide tabs. Get organized, get proactive, and be the guide and the guard to your health.