PCOS and Me

I was diagnosed with PCOS (Polycystic Ovary Syndrome) about a year ago. Definitively. I say definitively because I believe there were clues from the beginning. Since I hit puberty, I never once had a regular menstrual cycle. Of course when I was young, it was attributed to the fact that I was young and as I got older, I just figured it was my norm. Throughout high school but definitely when I was 17, I gained weight. Quickly and for no reason. It was like I woke up one morning 20 pounds heavier. My childhood physician said it was due to stress and laziness. He prescribed more exercise and to "relax." I was on my HS lacrosse team, was involved with many extracurricular activities, was always outside doing something physical but every visit was the same. "You're fat because you're lazy. You have to exercise." In my 20's, my OBGYN first mentioned PCOS to me and referred me to an endocrinologist to be tested for this disease. This was over 6 years ago. This endocrinologist determined that a PCOS test was unnecessary because I only had a few of the symptoms. Instead he did a regular physical where he found out that I have alarmingly high blood pressure and a lump in my neck which would turn out to be thyroid cancer. 3 years ago, after I found a different endocrinologist, the topic of PCOS was revisited due to my continued inexplicable weight gain and irregular periods. She actually ordered the test and determined, yes I do have it. 
After going through the emotional roller coaster 6 years ago of thinking I would never have children to thanking God I don't have this terrible disease, I found it unfair that I was given false hope for 5 years. I find myself going through all these emotions again...

Lately, as I'm getting older and am thinking about having children, I find myself reading a lot of blogs about PCOS. Crying while reading the heartbreaking stories of miscarriage and infertility and cheering when reading about the success stories and women having multiple kids despite this disease.

I'm having my own struggles with PCOS. While I try to not let it define me, at my age, the social pressure to procreate is palpable. Especially after having been married for almost a year, the inevitable question "when are you going to have kids?"comes up often.

When. It's amazing how one word gets to me. I always find myself replacing when with if in my head. I know this is incredibly pessimistic. I often think of it as my defense mechanism. If I don't expect it and want it too much, maybe it'll happen for me.

The fact is, in my heart, I want it. I want it desperately. I've always wanted it. When I was asked in my youth what I wanted to be when I grew up, my answer was "a mother."

But with this diagnosis, I've tricked myself to think of kids as exhausting, expensive and unnecessary in my life. Sometimes my mind really can convince me. Kids are all consuming and being a mother is a thankless, self-sacrificing, exhausting, merciless job. One I'm not prepared for, one I don't have the energy for, one I don't want.

... but then my heart. My heart that makes me take the Metformin twice a day despite the painful side effects on my stomach. My heart that makes me ache to see that second line on a pregnancy test. My heart that makes me daydream about watching my belly swell with a precious baby inside. My heart that makes me feel the slight pangs of jealously when yet another friend announces she's pregnant.

Update 4 Years Later

The last post was over 4 years ago! I'm proud to say that I've been cancer free for 4 years. It's a strange feeling. On one hand, it feels like it was just yesterday - getting the diagnosis, scheduling the surgery, enduring surgery, laying up in the hospital bed with a bag hanging from my neck, the month of strict no iodine diet, RAI therapy... On the other hand, it feels like it was so long ago and I've moved past that part of my life.

Since the last entry, many great things have happened. I got out of a toxic relationship, started a wonderful relationship then got married (!), became an aunt, reaffirmed my love of baking and creating with my hands, grew closer to my family and remain cancer free. But along with the good comes the bad. I was hospitalized twice - once for vertigo and once for labyrinthitis, had to go to rehab to regain my balance after the labyrinthitis, gained back 10 of the 30 pounds I lost, and was diagnosed with PCOS. And a couple things I don't know which category to put in so I'll call them close calls - almost lost my mother to a brain aneurysm, and had a re-occurrence scare after one my ultrasounds came back with suspicious lymph nodes (came back negative).

So, there's the update. The good, the bad and the close calls. But I'm trying to embrace it all because life does go on... and I'm thankful for that.

Radioactive: Day 6

Today is the last day of "official" isolation!!! Yippee!

Starting tomorrow I can venture outside and be around people. I still have to be careful of small children and pregnant women for a while longer. And just to be on the safe side, I don't want anyone to touch me for another few days. So I'll be around people but at a safe distance. If you see me within in the next few days, please don't take it personally if I just wave from a distance. Haha!

I'm going to stick around in Jersey for another couple of days then probably head down to PA on Tuesday. That depends on if I can get in touch with my doctor and get him to prescribe me some hormones. I need em. I need em badly.

I feel great today. Maybe because I see the light at the end of the tunnel. Maybe because I got my voice back. Maybe just because the way I'm thinking is different now. Maybe all of these things.

In any case... it's going to be a good day. :)

Time for "breakfast"! Haha... man, I'm going to miss sleeping in once I go back to work.

Radioactive: Day 5

Last night we had a really big storm. Lightning, thunder, rain that pounded on my windows. I loved it. It was like a jolt to get me out of my funk. I also had conversations with my family.

Why am I sitting around feeling sorry for myself? I'm better than that.

I still have the feeling of nausea, fatigue, loss of appetite, etc. but those things are not going to go away right now because I'm so hypo. I can't really change that.
What I can change is how I think about it. So I'm changing.

I'm changing my outlook and I'm changing my approach. I've been looking at therapy as the enemy. It's not. It's the help. I need to help it help me. (Whoa, did I just quote Jerry Maguire?)

Here's the new game plan. More water, more food, more positivity... most of all less bitching. I'm tired of it. I think the complaining and bitching is what's taking more energy than anything else. Energy I should be using to get myself better.

So let's go, radioiodine. Let's kill this thing once and for all...

Radioactive: Day 4

Today I woke up at noon.
Still the same. No voice, nauseous, lack of appetite, sore throat.

I couldn't sleep last night. I was up till 3am. I have dark circles under my eyes and I feel like crap.

I thought maybe some toast would help settle my stomach but every time I open my mouth (or the fridge), I feel like I'm going to throw up.

When I called the hospital, they told me to call my Endocrinologist. When I called my Endocrinologist, an answering service told me they're out to lunch until 2:15. 2 and a half hour lunch... nice.

I guess I'll just try again later. Until then, I'm going to try to eat something... let me rephrase that. I'm going to eat something.

I'll update later... after 2:15, I guess.

Radioactive: Day 3

I woke up hoping that my sore throat would be better... It's a little better but now I've lost my voice! Not completely but it's hoarse. I'm not sure if it's because of the radiation or because I sleep with the air conditioner on and I've caught a cold or something.

This therapy is worse than post-op. I kicked cancer's ass, but so far therapy is proving to be a much stronger opponent. Isn't therapy supposed to be helping, not hurting?

We'll see how the day progresses. Maybe my voice will loosen up after a shower and breakfast. Although, I have no appetite at all. I have to FORCE myself to eat something. I think being on this low iodine diet for over a month has given me an eating disorder (unintentionally, of course.) I'm never hungry. I eat like a bird. For the past couple of days my meals have consisted of a handful of carrots, water and maybe a piece of fruit. I eat to not faint but that's about it. Even the thought of eating regular food doesn't appeal to me... and I've been looking forward to that for WEEKS! Just thinking about food makes me nauseous and exhausted. So for now, I'm sticking to ice cold water and sour candies. Even though the sour candy is now hurting my tongue.

I'm a mess....

Radioactive: Day 2

I don't know if it's just in my head but I woke up this morning with a sore throat. It's kind of like I can feel this radioactive stuff working on whatever's left of my thyroid. Kill the bastard, Radioiodine.