When I was eighteen I had my first mammogram. I had found a lump and for a very flat-chested girl, that was a huge thing. I went to Lisa, our family doctor, for my results. She told me the diagnosis, what to expect, etc and sent me on my way. Later that afternoon, as I came through the door, Ma asked, “Well?” “Lisa says I have cystic fibrosis.” After some screaming, asking me questions I could not answer and one frantic call to Lisa, Ma turned to me and said: “You have fibrocystic knots in your breast, you idiot!” I learned early on the importance of understanding your diagnosis, asking questions when necessary and knowing proper medical terminology as it relates to you.
From 2014 through 2015 I started having red flags that something was “wrong” with me:
- Acne in my 40’s
- Plucking that extra facial hair
- Elevated A1C
- Inability to lose weight (only gain it)
- Irregular cycle wrought with issues (palm-sized clots, nine days in length, two in a month, terrible back pain etc)
- Utter exhaustion the majority of my waking hours
- Extreme mood issues ranging from euphoric happiness to despondent “end of the world as we know it” lows
In 2014 and 2015, at my regular yearly checkup appointments, I kept after my doctor about these issues. I received the: “well you are getting older” routine. Being in my mid 40’s and living an active lifestyle, this excuse always rubs me wrong . Obviously shit expires on your body at some point but had I really reached my entire expiration date? I asked if I was pre-meno and was told no. In 2015 I became more persistent about my issues so:
- I was scheduled for a dermatologist appointment where a topical OTC cream was suggested for the acne because of: “hormone changes as you get older”. Two biopsies later, I knew I was skin cancer free. I will take good news where I can get it.
- I had plantar fasciitis for half of the year and in the back of my mind wrote off the weight gain to my inability to achieve my normal level of activity.
- Although I did not cut sugar completely out of my diet, I did cut back tremendously. However, my A1C would continue to hover between the ok level and pre-diabetic level. I tested a couple of times over the year while trying to maintain it and was never able to reach a level I had confidence in.
- I took to using a day planner to remind myself of things otherwise forgotten.
By the end of 2015 I had stopped feeling like myself. My moods were all over. The undertone of my thoughts was generally sadness even if I had nothing to feel sad about. I felt disconnected from myself. When my yearly rolled around again on January 25th of this year, I decided that I would not take the “old” excuse. During the visit she prescribed Metformin for the A1C levels to keep me from tipping past ok and falling into Type 2. She also said she thought I could have polycystic ovaries. FINALLY! I cannot begin to explain how relieved I was to have something more tangible than the “you are getting older” routine. She scheduled me for a mammogram and a pelvic ultrasound.
Throwback to yesteryear: Ma was a disabled RN who suffered from a number of ailments. However, she always thought she had more ailments than had been diagnosed. She kept a Physician’s Desk Reference close at hand in case she needed to self-diagnose. I remember vividly the blue hardback book with the gold lettering on the spine. Watching her, I learned that having a little knowledge and access to “expert information” could lead to unnecessary worries and stress (and a whole lot of made up illnesses). Fast forward to now: limiting myself to WebMd, Mayo Clinic and AMA websites (and NOT Google search), I looked up the basic information for Polycystic Ovary Syndrome (it has an official name!). I fit the bill, it is not terminal and (with some management) completely controllable. And although some of my symptoms are because I am old as shit, the overall feeling of being “off center” from myself – that could be tied to the hormones being off balance because of this syndrome. What a relief.
Three days later I found myself at the Women’s Wellness Center for the hospital. Here I would like to pause and offer a PSA: Ladies, let your significant other sit out in the hospital’s waiting area. WHY do you have to have them sitting next to you as other women – aka me – are walking around half naked in minimalistic hospital gowns?? So frigging annoying to be creeped out by some redneck hick dude staring at me while my boobs swing free under the thin gown in a cold room! (Thanks for that, not!) Up first was “human platypus” aka how thin can we squish your boobs until you want to pass out? Then I was ushered to another room and chastised for having not consumed 40 ounces of fluid just prior to walking in (um…warn a bitch and she will follow commands). 60 ounces of water later we are good to go. Jelly on the belly and let’s roll. Then my radiologist says: “Go urinate, come back and we will get started on the second part.” Wait, what second part?
Meet the pelvic ultrasound wand! You have to put it in an area of the body that is normally hidden during working hours. Well, unless you are a prostitute.
Laying on the table with the blanket draped over my knees so “down there” was not visible to either of us, she applies a GENEROUS amount of blue gel to the magic wand then reaches over and lays the wand between my legs/feet and says “I will let you insert that.” ((Here I would like to note that for those of you who do not know me, I should come with a label that reads: WARNING: Deals with stress, worry and fear with garish and highly inappropriate humor.)) My response: “Am I not paying you to do that?” ((crickets)) I was the only one in a room of two who saw my humor and thought it was funny. I followed that with: “Just funning ya…here we go.” It is at this moment that she is no longer a radiologist in my eyes. She is my dildologist. For the sake of the woman who did not find me funny, I refrained from asking for a cigarette or dinner once she was finished. She ended with: “You can clean up now and you can expect your results by mid-to-late next week.” I will say that once she left the room I did text Erin something along the lines of “I look as if I was gang raped by a group of Smurfs.” But, in my defense, she used what seemed like the whole bottle of the blue gel.
Two days later, on a Friday at 3:00 PM I received a phone call while sitting at my work desk and was told it was very important that I see a gynecologist the following Wednesday at 9:45 AM because I had a tumor on my ovary. I hung up the phone and stared at my hands lying flat on my desk. I was trying to let my brain catch up to the words I just heard. Then I became very angry. Who does that? Who just calls you up on a Friday at the end of the day and tells you “you have a tumor”? My world tilted just a little bit.
tumor noun: a swelling of a part of the body, generally without inflammation, caused by an abnormal growth of tissue, whether benign or malignant
So, Ma’s Physician Desk Reference…yeah. I looked on my “respected sites” and all of them kept referring to Cancer. ((As a side note, most times when I hear the word cancer, Brighton Beach Memoirs comes into my head and I feel as if I need to whisper the word in a heavy 1950s Brooklyn accent: https://youtu.be/z4ZzgG5XSmU)) I was desperately searching for the phrase “fibroid on the ovary” because fibroid was the safe word everyone kept telling me about. According to WebMd: Fibroids (leiomyomata) are noncancerous growths that develop in or just outside a woman’s uterus (womb). As they grow, they form a benign tumor. The respected websites kept referring to “cancer” when mentioning tumors on the ovaries – so, let the Google search begin. There is not a lot of data out there about fibroids on the ovaries. It is all about uterine fibroids. 90.75 hours (and one eternity) later I saw a gynecologist. We will call said doctor, Dr C.
Until this point, I had never met Dr C. Dr C was a male – I do not go to males for my gynos. To me, I relate better to a doctor who has the same parts as I do and therefore has experience with the same “things”. However, for sake of getting my prognosis and what to expect next – Dr C it was. I was given paperwork to complete. There were two questions that gave me pause:
- What is your sexual orientation?
- Do religious beliefs impact your medical decisions?
Living in WV, I always question why one would need to know the sexual orientation of another for any reason (other than being interested in asking them out on date). Erin assures me that it is so they can give proper care and is a common question in the medical profession. I am heterosexual and am not confronted with such atrocities as our state’s new HB4012 bill but it is still terrifying to think a person could refuse you services due to your sexual orientation while using religion as an excuse. ((I will save that thread for another blog.))
I was called back (and weighed, thanks for making me feel just a little worse). I was asked to give a urine sample. This is when ALL the red flags popped up. The nurse hands me a cup that looks like one you would receive when ordering a mixed drink at a bar and points me to the bathroom and says: “When you are finished, put it on the shelf outside of that slider (points at wall).” I am still looking at the cup in my hand. It wasn’t a red solo cup but I guess I could fill her up. I close the bathroom door behind me. I look at this cup, how large it is and I chuckle because this isn’t going to be pretty. It is three times the size of a regular specimen cup and there are no sanitizing wipes. How can this even be proper protocol? But I manage anyway. I realize the garbage is overflowing and the floors are dirty. At 9:45 in the morning, I find that completely unacceptable. I sit the specimen on the back of the toilet, arrange myself and look to the slider that was pointed out earlier. I realize you can see straight out into the reception area via the little slit around the slider. Well, hope they had a good laugh. ((By the end of this appointment I really wondered if it is a mandatory drug test I just took part in, but I cannot confirm that possibility.))
I was shown to an exam room and the nurse was to follow me in to complete an extensive history. But first, she wanted to print out the results from my pelvic ultrasound and mammogram. This gave me ample time to look around at all the wonders this crazy circus of an office Dr C was rocking. There was a psychedelic poster over the door. If you were to lie on the table and craned your neck back somewhat, this would be your, what, entertainment? Next to the bed was the Jurassic Where’s Waldo poster. The wallpaper was dirty and peeling off the wall. At one point I took a picture and sent it to Erin, it looked as if the last patient tried to claw their way out of the office. The garbage cans were disgusting with something having been spilled down the side. I could go on but here are a few pics for visualization:
I sat, fully clothed on the edge of the chair that was the most awkward to sit on (thinking because of its awkwardness, fewer people have sit in the chair and therefore seeing as I am sure it had not been cleaned lately, maybe I would not be prone to catch whatever might be leaping off of it.) The nurse comes in, sits on the physician’s stool and opens up my paperwork on the end of the examination table. By this time I am in full blown “me” mode. I blurt out: “I don’t see male doctors so please let him know that there will be no pap today.” Honestly, if I met an amazing doctor that was male, that opinion could change. But, from first impressions based on the upkeep of his office, I could tell without even meeting him, Dr C is not that male. I tell her up front that I know my Ma’s medical history and that of her family but I do not know my birth father’s history. We go through all of Ma’s ailments that have consequences for me (at one point the nurse stops and says, “Your poor Mother.”) Then the more intimate questions start. “Have you had more than five sexual partners?” Me: “At once?” The look on her face was priceless as she sputtered about trying to explain that NOOO that is not what she meant. Once I realized she had a sense of humor the beast was set forth: “Slut shame much?” And soon she was in a fit of defensive giggles. She, the nurse, would be the only redeeming factor in Doc C’s Filthy Circus. She left the room, door still wide open. I sat there with my thoughts and nervous energy.
The doctor had a young lady shadowing him that was interning (I gathered that from her ultra white lab coat and her shiny new stethoscope around her neck). There was no introduction of the young lady. He just plopped down on the same stool as the nurse had previously occupied and (with the open door policy still standing) looks at my reports then exclaims: “Holy shit that’s huge!”
The exchange after that went along the lines of (paraphrasing):
Me: Excuse me? Did you just say ‘Holy shit that’s huge?’
Dr C: Yes, it is huge.
Me: Does this mean I will lose my ovary?
Dr C: Your ovary? Where did you get that from? No they are in or on your uterus.
Me: From the idiot who called me at work Friday to tell me I have a tumor on my ovary!!! THEY?? There is more than one?? What the fuck is wrong with you people. Calling over the phone to tell people about a tumor that ends up being more tumors. WHAT THE FUCK IS WRONG WITH YOU PEOPLE?
Dr C: You have multiple tumors in or on your uterus. We will need a CT scan to tell where they are and how many. The largest one is 77mm. We won’t be able to rule out cancer until they are sent off for testing.
Me: (Trying to pull up the 8th grade math class calculations in my head). So it is about the size of a plum?
Dr C: If it’s a “juicy” plum. ((again, WTF is wrong with these people?)) Stand up a moment. ((at this point I think he is going to point to where the tumors are on my person. He tells me to hold out my arms – in my bad humor moment, to mind comes that Michael Jackson pose which is always shown in shadow, with arms to his side – all I needed was the hat. He taps my hands and says:)) These are your ovaries. And your body would be like your uterus…
Me: What the fuck? Are you actually doing this right now? Are you really physically using me to diagram out my girl parts??? (I point to a piece of blank paper next to my file) Draw it like a normal person for fuck’s sake! (…after a few awkward seconds of further explainations….) What would you say needs to be done?
Dr C: You will need a pap smear, it is required by your insurance. (I would find later that this is not true in the least.) I will go in laparoscopically and if I can get the tumors out that way, I will. If not, I will cut you open and remove everything.
Me: Thank you. I am done here.
At the desk I was diminished to tears but determined. I allowed his receptionist to set up a CT appointment because I gathered one would be necessary for the next phase of treatment. I was never going to let Dr C touch me, let alone operate on me. But I could utilize the fact that he set the wheels in motion and I would take advantage of that for the sake of timeliness. I immediately went to the records department and asked for copies of my last yearly appointment, the mammogram and the ultrasound.
I am thankful that I received all of this information in the days before I was to head to Boston where I could rattle on to my female friends. They calmed me down and made me feel somewhat human again. I had to fight with hospital scheduling but I was finally able to get in for the CT. I have since found a doctor, who I adore. My pre-op exam is April 12th and I have an appointment on April 14th with my regular physician to clear me for surgery. Surgery is scheduled on April 25th. At first she will go in with a scope to confirm what is shown on the CT and ultrasound reports. She will then remove my uterus (the least invasive way possible for a better recovery time) and the tumors. My ovaries will remain. The tumors (some the size of your fist) will be sent off to ensure they are not cancerous (seriously, right there in my head I whispered the word again, Brighton Beach style). But SHE has assured me that the chances of their being cancerous are very slim. And I will have 5-7 weeks of recovery at home.
My biggest issue (with life in general AND my current health status) is that I need to feel as if I am in control or, at the least, have all of the information in front of me (so even if I am not in control, I at least know what is going on all around me at all times). From the moment the word “tumor” buzzed out of my phone and into my ear until the moment my new doctor told me “It will be ok” – I was frantic (on the outside I did my best to control my disposition – although I know that was not 100% effective, I can promise you the internalization side of that equation was off the freaking charts).
I now have a game plan. It’s simple:
1. Get to the healthiest version of myself possible in two months. Running, yoga, some core (some of it is uncomfortable to do right now), and a lot of walking/hiking.
2. Clean up the clutter in my life so I have fewer things to stress about during recovery. That “clutter” is a wide range of things. Some involve procrastination, some productive uses of my time. I will ready my yard for the spring (shrub planting, flower setting). I will wrap up some projects at work. I hope to prep slow cooker meals I can freeze and have available during recovery. Spring clean. Productive things.
So that is my current medical state. If you are into prayers, send one up for me. If you prefer good thoughts and vibes, then send me some of your hippie voodoo, I appreciate it too. I love you all to pieces and I am confident that my surgery and recovery will be well performed and complication free.
And, prepare yourself, there will be blogs…
I can’t help but laugh with you because our situations are eerily similar. Sometimes it’s enough to know you’re not alone in your awkward transvaginal ultrasound moment. For me, while I waited for the doctor to come in, I over analyzed whether when the doctor said remove your pants if he meant underwear (this was before I understood what a transvaginal ultrasound was, which would have made the whole decision easier) At the time, I just didn’t think there was anything more awful that the thought of removing your undies for a doctor that comes in to perform an ultrasound and says, “Wow, well, hello there. I just wanted your pants off so that the waist line didn’t get in the way of the ultrasound I’m performing on your abdomen but thanks for the show lady” After working myself into a tizz over that first decision (I removed and replaced my undergarments several times while I waited), I was not prepared for the next question by the doctor asking if I wanted to insert the wand myself. I blushed and sputtered no, and then corrected myself and said yes, because I didn’t want him to think that I wanted him to do it, and then reverted back to no, because I remembered that I hadn’t attended the whole, DIY transvaginal ultrasound course and wasn’t in fact a DOCTOR! Yeesh! Can’t you just knock me unconscious until this whole sordid ordeal is over (unfortunately this ordeal is going on 3 years now so…) Thinking of you and laughing…because if we don’t laugh…we’ll cry, right 😉
Michelle. I just read your blog. While I am sorry for you having to go through all that, I am pissing myself laughing! You are spot on! Been there, done that! Hang in there. I’m sure everything will be fine. I’m glad you found a doctor who is caring and sensitive for you. I will send prayers your way. I don’t do hippie voodoo. Keep us posted on your progress. Cindy
Thanks so much Cindy! All prayers are appreciated. I find that I deal better with a sense of humor. Life is too short to be taken too seriously. Love you guys! Give Skip a squeeze for me and tell him I love him!