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jedimasterkelly · 3 years

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Shit happens when you're a woman. A lot of shit. Bad shit. And a lot of the time, you will run into doctors who do not listen to you. Will not care about you, and will not take you seriously.

This story is about the Great Cancer Scare of 2020.

I was 49, and 3 yrs post menopause. I was pleased about that, as it means no more period ever. I could deal with the occasional hot flashes, and the snapping of necks of anyone who dared bother me. Then in May of 2020, after the pandemic fully hit and the University I work at closed and sent all of us to work from home, I got very sick. Not from Covid, thankfully, but something else. I had started bleeding, and it wasn't menstrual blood. It was bright red and HEAVY. I was filling post-natal pads within 2 hours. I called the Women's Clinic where my OB-GYN lived. They couldn't see me until July. WTF! I called my GP, who got me in on an emergency basis, I mean, 3 yrs post-menopausal women don't just spring a leak, you know? My ovarian function had been almost nil for 3 years. He called my OB-GYN and demanded I get seen right away. They made an appointment for 2 weeks later. Keep reading, because it's quite a ride!

Seriously! 2 weeks later!

In the meantime, my GP discovered my thyroid was tanked out, so I was put on Levothyroxine 25mcg. It helped a lot. I started to feel a little bit more human, at least in the brain area. I finally got in to the OB-GYN, and he did a biopsy and trans-vaginal ultrasound. We got the results 2 weeks later and he called me in to go over them. He said I had hyperplasia with atypia. Cells were dividing rapidly, and he was very concerned. He recommended an endometrial ablation, or a full hysterectomy. At 49 he wasn't concerned with me having a sudden maternal urge (I have no kids), so he was fine with either choice. I decided on the hysterectomy, because why not? Endometrium grows back after an ablation, and why bother at my age? Just yank it all and let me get back to my life.

He said he didn't feel safe doing the procedure, since the cells were most likely cancerous and rapidly dividing, so he sent a referral to one of the cancer centers in OKC. I expected a call within a couple of weeks. I mean, really, if I have the early stages of endometrial cancer, they'd call me in immediately, right? Right?

Crickets. Literal crickets for 4 months! I was very concerned, hell, worried I was going to get full blown cancer and these jackasses weren't going to try and help me at all. I called OB-GYN several times during that 4 month period, and was told the cancer center in OKC wasn't returning their calls. I called them numerous times, and could never get a person on the phone.

I was told it was the pandemic. The pandemic was shutting everything down and causing huge backlogs for non-Covid issues to be seen. I told OB-GYN to refer me to the oncologist from Tulsa, who also worked once a month in Stillwater at the SMC Cancer Center. He didn't want to, he wanted me to see the doctor in OKC (who wasn't returning anyone's calls!) I called SMC Cancer Center and asked how soon I could get in with Dr. Thomas. His office called back within 2 hours asking for my chart and biopsy results. I had the Womens Clinic send my information to Dr. Thomas in Tulsa. Within a week, they called and had me on the schedule to see him in Stillwater on his next visit.

This is where the story gets good. And by good, I mean, WHAT THE ACTUAL FUCK. Thanks for sticking with me this far.

Got in to see Dr. Thomas. I researched him and learned we have the same Alma Mater. That day, we were both wearing t-shirts from said same Alma Mater. Instant bonding! I also work in Administration at said same Alma Mater, so we spent some time discussing (gossiping) about my department since he had taken classes with a lot of my faculty during his undergrad. Then he got serious and handed me my biopsy report. He told me he was going to assume I wasn't shown this, since I am:

1. A Master's of Science graduate student in Education Leadership - this making me a researcher who knows how to do research, do research, and understand research.

2. Work full time in a Physical Sciences department at a Big 12 University.

3. Edit manuscripts for my Dept. Chair, thus proving I am scientifically literate. You can't edit scientific manuscripts without having a good, solid knowledge of said science. If he's alternating between "adsorb" and "absorb", I have to understand his research in order to correct his manuscript. This is important because his manuscripts have to be peer reviewed before they can be published in a reputable journal.

"Read it to me, out loud," he said.

I started reading from the paper in my professional scientist voice. It didn't take long before I began to falter as I came to the realization I had been lied to.

"Read it again," he said.

This time, I read it with a lot more heat in my voice.

Diagnosis: no hyperplasia with atypia, no abnormal cells detected

Dr. Thomas waited for me to explode. I didn't. I just stared at him in anger and horror. He offered to do another biopsy to make sure, but he suggested I fire my OB-GYN immediately and find someone who actually gives a shit about me.

I was still randomly bleeding, 6-9 weeks at a time, so we agreed on another trans-vaginal ultrasound and biopsy. The attached photo shows he took 3 samples from my uterus. He wanted to be sure.

A little ditty about endometrial biopsies:

They hurt like a motherfucker.

Take 2-3 ibuprofen before you leave the house to go to your procedure.

Relax. It usually only lasts a couple of minutes. The doctor normally takes 1 or 2 samples. Pinch, snip, clip, done.

Not this guy. He wanted to be surely sure.

He went for a 3rd pinch snip clip. My uterus seized up in the most painful spasm I ever had in my life. I almost came off the table. He was seated on a little rolly stool so he shot back away from me before I could connect his head to my foot. He triumphantly held up his little weapon of Uterine Destruction and declared, "Got it!"

"Yeah, you almost got your ass kicked mister," I growled at him.

"It was worth it to get this beauty of a sample."

So, after a biopsy of your uterus, expect some bleeding and cramping. I had severe cramps for 2 days. I was not amused. We're talking laying in bed with a heating pad and ibuprofen every 4 hours kind of cramping.

Got the results back in a couple of weeks. No cancer. No hyperplasia. No abnormal cell growth. He recommended I find a new OB-GYN fast. I decided fuck it, I'm done. I'm never seeing another OB-GYN ever again.

Dr. Thomas said several times he's convinced my issues are endocrinal. I filed that away in the back of my mind.

(if you ever do test positive for cancer and you are in the Tulsa area, I highly recommend Dr. Eric Thomas! Make sure you have a sense of humor with him.)

My GP started pressuring me back in March of 2021 to find a new OB-GYN. The Women's Clinic has several, but they have a fucked up rule you can't switch doctors there. So if you go there, you are stuck with the same doctor and can't move over to his colleague on another floor. I saw my GP again, and asked if he was still best buds with a gynecologist who had his own clinic. He was always full, and not taking new patients, so GP would have to call his buddy to get me in.

Which he did. Buddy-GYN's office called the very next day to schedule me in. He had been sent my chart and was concerned about the long bleeds (6-9 weeks in duration) and why the fuck were they happening after being 3 yrs post-menopause.

I went in for a consult in April of 2021. First thing out of his mouth, "Has anyone ever talked to you before about PCOS?"

I laughed.

I laughed because every GYN I saw over the last 20 years told me I didn't have PCOS, endometriosis, or any sort of hormonal issues. I was just fat, lazy, and a piggy pig pig. I actually had one OB-GYN tell me to go on The Biggest Loser. Fat shamed while sitting there naked on his table after an invasive exam of my female bits. Thanks a lot, asshole.

I told him about that. He informed me he could tell by LOOKING at me I have the classics signs of PCOS. I use an epilator on my crazy man-hairs, so he asked if I was tweezing or waxing. I about fell out of my chair. Nobody ever believed me that I was having to remove crazy thick hairs off my chin and neck all the time. He asked if I ever had ovarian cysts. Affirmative, I was diagnosed with ovarian cysts the first time one exploded back in 1994. He stood there, holding the bridge of his nose and shook his head.

"Well, going by your chief complaints, your abdominal circumference, history of bursting cysts, and no period for 3 years, I am saying you have PCOS."

He went on to discuss my need for an appointment with an endocrine specialist, he was convinced my thyroid tanking out sent my ovaries back into production, and now my hormones are all over the place, most likely, and I needed specialized care.

He must have talked to GP, because I soon got a call from the endo clinic to come in.

This post is already long and tedious, but I am happy to say I finally have 3 doctors who listen to me. My new Endo doc tripled my levothyroxine and scheduled a follow up blood test for next month. Buddy-GYN talked me into a pap smear and cervical exam in July as well. He also wants a mammogram, which I begrudgingly need to schedule so he doesn't chew my ass in July when I walk in with no results. GP is working on my other issues (weight, bad fluid retention, etc...). We discovered from a blood test last Friday my iron levels are dangerously low. I am now on a Rx iron supplement. I've always struggled with anemia, but it never occurred to me or GP to check my iron levels. If you're a woman, and you feel like absolute dog shit and your doctor can't figure out why, have your iron and electrolytes tested. It'll probably take about 3-4 weeks for me to see any results from the iron supplement, but I can already see a reduction in fluid retention.

In September, I have an appointment with Dr. Le at Integris in OKC. He's a bariatric surgeon. I have gained so much weight from having PCOS and Hypothyroidism that I need to drop a lot of fat fast. I'm pretty healthy - I don't have the normal problems obese people tend to have. I'm not diabetic, don't have sleep apnea, my cholesterol levels are good. I am what they call "healthy fat" which seems like an oxymoron. However, it will improve my chances of getting approved for a sleeve gastrectomy.

I turned 50 last week, and had to endure 3 decades of no one listening to me. I feel I lost so many years of my life and I can never get them back. I hope this post reaches a lot of younger women having issues. Keep looking for a doctor who will listen to you. It sucks we have to hunt for these unicorns, but they do exist. I finally have a good team who actually cares about me.

You have a right to be listened to! You have a right to be heard!

I was asked: Who are my doctors?

Dr. Daniel Brown D.O. Stillwater Physicians Clinic

Dr. Yasuto Taguchi M.D. Taguchi Women's Clinic

Dr. Wynter Kipgen M.D. Stillwater Diabetes & Endocrinology

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happy2bmyownboss · 4 years

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So, I know it has been a bit since I’ve posted and I do apologize. To say that life has been crazy would be an understatement. We’ve had dentist appointments, another birthday (Ms. Caitlyn turned 13), house drama, and some baby news.

In our last life update post, we had just had Mr. Joey’s birthday and I had been working on getting some freezer meals entered into our Cozi calendar. (Yep, that’s an affiliate link and there may be a couple more scattered in the post as well.) The new meals that I’ve added to our rotation have been a big hit and many of them came from Jamerrill’s Large Family Table.

I have tweaked a couple of them to work for our family but everyone has loved them and I will soon be making them in bulk to put in the freezer. I’ve been holding off on another major Freezer Meals session because we want to get moved in so we wouldn’t be moving so much frozen food back and forth.

As far as the house goes we have had a little bit of progress:

the electrician has been out and finished his work

the electrical inspection passed… YAY!

the finishing crew fixed a few items but left a few to finish which we will tackle this weekend

Now we are waiting on the skirting which is scheduled to happen tomorrow morning and then a final inspection scheduled for Monday. We are still waiting on our steps for the back door as the ones that came were the wrong size. You can see that the post falls in the center of the second door… we plan to replace these with French doors in the future and those steps won’t work!

Once we get the final inspection we should hopefully get the go-ahead to move in by Tuesday… woot-woot! We are so ready but we are dreading the move as well.

This weekend we will be installing the dryer vent which was missing and a couple of lights in the bedroom closets. Mr. Awesome is replacing the pull chain lights with a couple of ‘can lights’ which will be wired to their own light switches… hopefully, this will keep the kids from breaking the lights.

As I’m writing this we just happened to notice that the electric company is over at the house so we should have power soon!

Over the weekend we made a trip to the St. Augustine Alligator Farm Zoological Park. This was our second time visiting the park and the second time we had been blessed with tickets to go. Thank you Ms. Dorothy and Mr. Ron! We all had a great time and the kids have been begging to go again.

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I found this cutie in the gift shop and had to bring it home with me for the baby:

The little trip over the weekend was much needed as Friday was an extremely stressful day… I haven’t really said a lot about any of this to anyone but I’ve decided to share this with everyone as we need all the love and support that we can get! It really does take a village to raise a child and maybe our experience can help someone else on their journey.

Friday was my first appointment with the high-risk clinic and it did not go anything as expected. We were at the office for almost 5 hours! I was already nervous because we had already had a couple of issues earlier. The doctors had already been telling me the risks of having a baby at ‘my age‘ and it seemed that they kept stressing the chances of having a baby with ‘issues’.

The ultrasound had been scheduled first and when the tech went to get the doctor I was pretty certain that she had some concerns… the longer we waited for the doctor the more it weighed on me. After 10-15 minutes I just started crying… poor Mr. Awesome didn’t have a clue and when I told him my fears he just reassured me that everything was going to be OK.

The doctor came in and did the ultrasound again getting even more pictures and measurements from different angles. She ended up telling us that the nuchal fold measured a bit thicker than what is considered normal which indicates an increased risk for chromosomal abnormalities. She also said that the baby seemed to have a ‘small window‘ in the septum of its heart but that this can and often does close up on its own.

She then sent us to talk to a genetic counselor. That was another experience in itself! When I say I was an emotional wreck it may be an understatement. He did his best to comfort us and then to explain the different conditions that they were concerned about… he seemed a bit surprised to find that we already have an adopted child with Down Syndrome and that we were familiar with some of the other conditions like Williams Syndrome.

We went over the risks again and the statistics before being offered some other testing. We have no family history of genetic disorders and the biggest factor is my age. We declined all invasive testing and opted for the NIPT screening which would be back within 5-7 days. It seemed like a long time but the time really did pass by quickly.

Sigh… after all of this I still had to see another doctor who again went over all the risks associated with my age… I’m 42 not 82! I was put on baby aspirin and told to continue my meds for the thyroid issue which reminds me that I need to call them back and get a refill on that! I really can’t recall what else they might have said as everything was pretty much a blur at that time as I was overwhelmed, tired, and hungry!

We went to eat before finding the lab and then got my blood drawn before heading home… we did talk a little bit about it on the way home and we both agree that this baby is staying put until it is ready to meet the world! The blood test results show that we are low risk for Trisomy 13 & 18 but at a higher risk for Down Syndrome… we also found out the gender but I’m not revealing that yet!

As of right now we are still not planning to undergo any further testing, we know that our baby is in GOD’s hands and although we may not know the reason for these trials that we are enduring at the moment we do know that HE has a plan! Does this mean I don’t worry? No. I really felt that I was on the verge of an emotional breakdown but Mr. Awesome has been right beside me and has helped me through this.

This can be really scary because there are so many unknowns. Yes, it seems that the risk for our baby to have a genetic issue is higher than many but we love this little one already. No test or procedure is going to be able to change the outcome and we will love and welcome this little one into our family.

We have to focus on the positive that our baby seems to be very healthy on the scan… it was dancing up a storm! The baby’s growth seems to be on track as well and we did see little fingers and toes… I also thought I caught a glimpse of the gender but the tech said it was too early and she didn’t give me a picture… I was right!

We can’t let the tests and everything else suck the joy out of this wonderful experience. I’ve had to ask GOD for strength on several occasions as no parent wants to think that there may be something wrong with their child. This pregnancy has already played a much larger toll on me than previous pregnancies and I am just completely exhausted most days.

I’ve had to hand this pregnancy over to HIM because it is completely out of our control… there is nothing that can change what is or what isn’t and HE will not desert us. I even told the counselor that those issues wouldn’t be the end of the world… it would just be something a little different than what we expected.

I mean, never in a million years did expect that I would be having a baby right now. It is a blessing to even be carrying this little life inside of me and for that, I am so very thankful. GOD has indeed been so good to us in so many ways and I must TRUST him and HIS plan for this child.

This has been my go-to verse for right now:

Please just keep our family in your thoughts and prayers and I promise to try to reveal the gender soon!

Have a blessed weekend!

Life Update: Crazy Days So, I know it has been a bit since I've posted and I do apologize. To say that life has been crazy would be an understatement.

#alligator farm #anxiety #down syndrome #Family #genetic testing #God is good #new house #nipt testing #pregnancy

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