After having the world’s stupidest period my whole life, I finally get a doctor who says “hey, PCOS” and doesn’t do anything.  But, after a couple of years of my period playing with me (everyday, nada for months, then need transfusions) a good doctor repeats the PCOS bit and then does the newest version of a DnC and I find out I have Cancer.  Endometrial adenocarcinoma, stage 1/3.  Look at me go.

Then a CT scan shows several inflamed lymph nodes nearby and either they’re just grumpy because I have an infection (my sinuses have hobbies) or they’re mad because there is cancer in my body, or the cancer has spread.  So. February 11 I have a total hysterectomy and they’ll take out the grumpy nodes and test them.  It will be ten or more days before I find out if my cancer has wanderlust. Seriously, look at me go…nuts I think.

No two people react to the pressures of cancer, strange barely known diseases, or other continually vicious diseases.  Some are anxiety zebras, but others are giraffes or elephants, whatever.  Personally, I think I’m a pied aardvark, and yes I’m just that weird.  Or maybe I simply feel that different from others I’ve spoken with who’ve faced cancer or other attack diseases.

I feel like I am cocooned with numbness, discounted and floating watching things happen “over there”.  Sometimes I feel like I’ve been struck by lightning and panic overwhelms me.  I’m not sure how to deal with it except to endure and hope to make it out the other side.  There is no set of rules or map to make it through this with who you were before completely intact.  Not that change is necessarily bad, but in the midst of dealing with something like cancer it’s a bit “et tu, brute”?

Friends and loved ones want to help, and in that desire, can add to the pressure and suffering of the patient. Some folks want the wailing and hugs, others want distance and calm. People like me will reach out when we can handle it and pull back when it just makes things worse.  It helps me to know people care, I just can’t handle the overload. I suggest that family and friends let the patient know you care and will help, but also let them feel it’s okay to ask you to step back a bit sometimes.  It’s horrible to feel overwhelmed and afraid to ask people to give you some space.  We’re trained by society to feel that it’s selfish not to accept help, even if it adds to the pressure and stress we are feeling. 

The time after the operation, waiting for the test results will be my worst.  I expect I will try several friends and family members patience.  I can only hope that they understand there will be times I want to talk with them, others I won’t.  I may do everything to avoid talking about “what ifs” and cancer, and it might be the only thing I talk about.  I just hope they can go with the flow, and make this nightmare a bit less in charge.  

Administrator’s Notes

Your friendly Coyote in Zebra Clothing here. If it wasn’t implied by this post being shared on this page, the reaction talked about here is completely normal. Nothing that was talked about is unhealthy or dangerous.

A lot of this comes down to understanding what someone is going through rather than assuming you understand. Respecting that, as stated by the author, no two people react the same. Whether not wanting to display their grief publically, whether they want to be hugged, whether they cut off their emotions and talk about it clinically.

What we should all be doing when someone is facing a life altering diagnosis, is listening. Being there as they ask us to.

It is easy to sit and say what we think the person should be feeling, or how they should be coping. But as long as they are moving forward, even it if is extremely slowly, then let them go at their own pace. Be supportive in ways they ask you to be supportive.

While the author doesn’t have EDS, and while cancer is a disease that we’ve often come to be able to cure, that doesn’t take away from the emotional impact. And as stated in previous posts, diagnosis is a Pandora’s Box. It’s grieving and we should all know that grieving is a complex road for all of us.

My Uterus Throws Tantrums & Hoards

It has no idea what it is supposed to be doing, or it doesn’t care. It never has. Some of the general symptoms of PCOS are irregular periods. Mine? I’d get one a year, maybe two. When it hit? Oh gods….

Until I was sent to my current gynecologist (who is amazing by the way), all of my struggles were brushed off as “PCOS does that sometimes”. The mass exodus of blood was one thing, I told them, but I’m exhausted, nauseated, the pain is intense, I’m dropping clots the size of turkey gizzards…this can’t be normal! It all changed when I was first put on Metformin for the insulin resistance aspect of things.

The Downward Spiral

My primary care told me that sometimes, period cycle problems clear up with Metformin, so I wasn’t surprised when within a month, I started a cycle. It went as it normally did for about a week. Then it kept going. In the middle of the third week, I got the worst cramps I had ever experienced. They were so extreme, I called the emergency pager for my doctor. I couldn’t stand because my legs would just give out. I was shaking and lightheaded from the pain. They came in waves every minute and I would drop blood immediately after they would start. And I use “drop” because that’s what happened. It was like my uterus was filling up a 1/4 cup and dumping it. I told him I know I had to have lost at least 2 cups minimum in the past hour, and it’s never been like this. I was scared and in unbearable pain. He said to take naproxin, and if it didn’t stop within the hour…go straight to the ER.

Thankfully, it did stop. But I didn’t have answers. When I called the next day to check in with him, he said he already put in for me to see a very specific gynecologist. I didn’t want to see a male gynecologist, but he assured me that he would be the best for me. I’ll be forever grateful that I listened to his advice. It took a while to get in to actually see him, and I had another terrible cycle within that time, but it was worth the wait.

Diagnostic and the Treatment

I had a lovely chat with my new gynecologist before we ever got to any kind of exam. He asked me to explain what I knew about my PCOS and details of what I was going through. He said he wanted to do a blood test to confirm PCOS, but also he wanted to do a endometrial biopsy, because he was pretty sure it was something called simple hyperplasia. Basically, instead of shedding the endometrial lining, my uterus was trying to keep it and what I was actually experiencing was blood loss…not a true period. If the test come back as he expected, he said my best course of action, with everything considering, was an IUD. He gave me information to read up on it at home while I waited for a call back. Within a week, he called to say they came back positive and to schedule an appointment.

There was a small hurdle, when we went to implant the IUD the first time, he pointed to a white mass the size of a softball on the screen and told me that was still a hyperplastic growth, and I needed to do oral progesterone to try and clear it. If that wouldn’t work, he would clean it out with a D&C, let me heal, and put it in shortly after. Lucky for me, they worked and the procedure was simple and easy. My surprise came when he showed me the placement of the IUD on the screen. Now, the IUD was small. It fit in the palm of hand. But it was not microscopic small by any means. When I saw it on the screen? It was a tiny, itty bitty white dot on the screen.

“WHOA! HOLD ON!” I’m pretty sure I yelled at him. Did he change the resolution? Because that mass two weeks ago was the size of a softball! This is so tiny!

He sat me down for a conversation about it. There wasn’t any point in making me worry at the time, so he didn’t make a big deal out of it. But yes, that mass in my uterus of hoarded tissue was quite large. The pain that I was experiencing with my last cycles? That was my uterus having contractions and trying to push it out…I was having labor pains. The blood was from things tearing as it tried to get rid of the overgrowth. The large clots I was passing were clotted blood as my body was trying to stop me from bleeding out. I wasn’t in immediate danger right then, but I was dangerously close.

Several Years Later

I’ve had the Mirena implanted since then and no more issues like that at all. It even helped my migraines and assisted in some other areas as it balanced out my hormone production. Thankfully, the type I had was not considered a cancer risk, so no other treatment aside from the IUD was needed. It’s not an option that works for everyone, and some don’t want to take the risks. It could attach to the uterine wall and create complications that make it impossible to have children. But for me? That was a risk worth taking compared to what my body was trying to do to me.

I’m still angry over it when women groups try and tell me that I need to embrace my feminine side and my sacred womb space…because that bitch tried to kill me. But I’m trying. Having a life where my laundry and bedroom no longer look like someone did a shotty job at cleaning up after a mass homicide…helps a little.

Just on Weight Management

So I have a (moderately) strict lifestyle diet when it comes to my food. I am gluten free and am supposed to stick to about 60 grams of carbs a day, lots of protein, low dairy, and lots of saturated fat. My other half jokes that I’m the only person he knows that the doctor said I can have loads of bacon, and it’s the truth! Even with that lovely grace of bacon, it’s a really difficult diet to follow. As difficult as it is though, I try to stick to it as best I can because it came out of years of trial and error and help from my whole medical team (which currently sits at 9, including an acupuncturist that networks with some of the traditional medicine team). Being on it, I’ve lost weight and continue to do so VERY slowly. This isn’t because it’s the best diet out there, but because I’ve found a way to work with how my body processes food.

Getting Into the Illness Aspect

All that was just weight management, but my particular diet has also helped me regain some of my health though the years of following it. It’s been a long hard road, and I can’t properly express just how infuriating it is to hear these snake oil salesmen touting their miracle diet that goes against doctor advice because theirs will fix all my problems. Let me be quite clear here….

NO DIET WILL COMPLETELY FIX YOUR HEALTH

Now before you jump to the comment section, that’s not to say a specified diet will not limit, manage, or reduce your symptoms. Of course it can! But we, as a whole, need to really step away from trying to push our diet agendas on those with chronic illness. What can be beneficial for one, such as low salt for high blood pressure, can be terrible for another, such as POTS that needs a very high salt content diet. Soy for some is a great source of non-meat based protein but can disrupt the endocrine system for those of us with PCOS, causing weight gain and increased complications with our hormones. Carbs are great as a source of energy if you need to work hard, unless you’ve got insulin and/or glucose resistance and then your body just decides it can’t break them down so it stores it and leaves you exhausted. Fruit is fantastic for the average person, unless you’ve got glucose resistance and then your body decided that it needs to store all that simple energy or let it the insulin float around the blood stream instead of using it. Red meat is absolutely fantastic for someone like me, but not for someone else who it triggers their IBS symptoms.

I don’t care what diet you personally subscribe to. Paleo, keto, atkins, low carb, low sugar, vegetarian, vegan, low acid, grain free, raw, alkaline, smoothies… There is not one “all size fits all diet” in any way. That doesn’t even get into the extreme end of the home remedies. David Avacado Wolfe should be considered the bane of all of our existence…seriously. Stop acting like you know what diet is best for your friends, your loved ones…and for goodness sake…stop accosting strangers! I had a woman approach me because she had seen me walking with a cane and order a sandwich with roast beef. Didn’t I know beef was probably the cause of why I’m walking with a cane? Even after I said “No, I just had surgery not too long ago, that’s why I’m walking with a cane”, that didn’t stop her. She just told me I wouldn’t have needed surgery if I wouldn’t eat meat. Yes…obviously eating meat changed my genetic make-up that created weak collagen. I’ve been living a lie. Thank you for making me see the error of my ways. Stop giving us crazy food advice! Please!

Research Can Be Difficult

Learning about proper nutrition is complicated, there’s a reason that nutritionists have to go to school and not just read a few health articles on Natural News and watch a few Dr. Oz episodes. Every body is different, and sometimes drastically so. I truly wish I had an easy answer that I could share with all of you. I wish I could share my food lifestyle and know that it could help everyone as it as helped me. Hell, I wish there was a set option I would have instead of struggling along and hoping for the best!

But there is good news. There are plenty of things that we do know about certain chronic illnesses. We know for PCOS, a low carb diet often works because of how the syndrome often directly affects insulin acceptance by the liver and they think they even pinpointed the gene. We know complex carbohydrates are bad for diabetics, especially in large quantities. There are general rules out there we CAN find and follow without going to extreme changes in a desperate hope to be cured. Research on sites dedicated to your specific chronic illness and stay away from anything that sounds like a miracle cure unless you’ve got some credible sources stating some really promising study evidence. If you try something and slide backwards? Make note of it. Talk to your doctors about it. And don’t force yourself through feeling terrible unless your doctor gives you a reason to. When I first went to gluten free, I swear I had the worst flu of my life…but it was just my body throwing a tantrum and it only lasted a week. Then I started feeling a lot better. But I talked to someone instead of just suffering in blind hope.

I don’t personally like the phrase “Love at any size” as a way of saying it’s okay to eat whatever you want and consider yourself healthy no matter how much you weigh. I do think we need to show love to ourselves no matter what size we happen to be though. Treat your body well, it may be flawed, but it’s the only one you have.