So let’s summarize the things that most of you (that follow me on Facebook/Instagram/Snapchat/Life) know, and then I’ll catch you up on the news.
1) I began losing my hair (head, lashes, brows) in September, and though we suspected, we didn’t know why. Thus, the brunette wig you all are so very fond of made its appearance in December when the sparse/bald patches came more frequent, patches fell out more aggressively, and I just wanted to give my head a rest. I love wigs, I’m a drag queen inside my head anyway, it’s no big deal. My hair *is* starting to grow back … kind of. My brows are hopeless 😂 But there’s pencils and things for that.
2) Since the day I had Lucy, I lost 100 pounds. Most in the last year-ish (about 70 of it). At the time, I thought it was a hormone specific diet I was on, along with daily exercise (probably partially true).
3) Everyone knows I have Endometriosis and PCOS – I was formally diagnosed during a surgery in March of 2012. Most is documented on this blog in the archives. Including surgical pictures, if you’re so inclined.
4) Since the summer, I’ve had phantom pains that shoot down my legs. They’ve turned into extreme cramping and mind numbing ovarian pain. Along with my hair loss, and other symptoms I don’t want to discuss yet, after 3 months of waiting for an appointment – off to a new specialist I went.
5 years ago, I managed my conditions with surgery and medical suppression. Endometriosis essentially feeds on Estrogen, so a chemical menapause with drugs called Lupron, Noethendrone, Metformin, and some kind of progesterone (I can’t remember the drug name) was my personal version of hell. My Dad was my savior and a saint during this whole ordeal, and even made my surgeon a Steelers cap. I love him so much.
At the termination of the treatments, my system jump started and I, somehow, got pregnant with my beautiful daughter. One in a million, truly. I don’t want anymore biological children, I just want this all to be over with.
And so we’ve arrived at the new news. After seeing an Endocrinologist and an Endo/PCOS specialist, my Endometriosis has spread in an agressive manner (the cells have mutated), and my PCOS is in full swing again. I can’t freeze my eggs because the drugs would accelerate my Endometriosis, and it’s already covering my bladder/kidneys. It has also mutated. Yeah, heavy stuff. Not really ready for the big words yet, but I’ll get there. 5 years is the standard for suppression to run its course, so I’m not surprised, but …. I don’t know, I was hoping that it would get better with all the great changes in my life, but here we are.
Because Endometriosis is estrogen fueled, I could have a laparoscopic procedure to remove the lesions, biopsy the areas, and have another round of complete suppression. But obviously, there’s a risk of it getting worse, spreading, and therefore having back-to-back surgeries and then more aggressive treatments I don’t need.
The other option, which is the best option with mutated cells, is a total abdominal hysterectomy, and more biopsies/scans in the surrounding areas. The only problem with this is that obviously, it’s major surgery, and I’ll probably need supplemental hormones/scans for most of my adult life. Endo itself will not go away, but it would be a much more severely rare occurance, and I won’t float in between “is this just Endo this time, or is it cancer” again.
So here we are. I have two scans and a second opinion in about 24 hours that will tell us exactly which route to take and if the most aggressive is the most necessary.
What each of the 4 shots that will suppress my mutates and aggressive Endo cost. 5 years ago, they were $300 each. Thanks pharmaceutical companies. What are people supposed to do that can’t afford this?
Right now, I’m handling the manic up-down swings of emotion that come with hormone changes. I am exhausted all the time – I can’t even mindlessly play video games with my friends without dazing off. So I haven’t, really. Manic depression is so isolating – and it has given me a completely new point of view on what it’s like for my friends who deal with this every single day. It gets really dark inside my head sometimes. This has been happening since last winter. I cry at car commercials, I scream at my fan when it stops working, and I laugh when something isn’t really even funny, I tell people things that I should probably keep inside my head. It’s a really interesting ride inside my brain right now. These manic up/down swings should’ve been my first indication that something was wrong. I thought it was just life circumstance with everything else going on, but now I know it was a warning sign. I can’t control it, so I just kind of hide away and focus on what makes me happy: my work and helping people.
When it feels like the walls are closing in, I book more dates to talk to groups of kids with wide eyes and open hearts. I go spend time in the Air and Space museum where I’m reminded that there is something much larger than myself. Being in D.C. has been part of the isolation problem, but I’m hoping that I can get back to Kansas City as soon as possible – I’m much happier and freer there, that’s where I’m most active and engaged with life. I’m not lonely there. The kids – the speeches – they give me a greater sense of purpose and love. That’s what I need.
So that’s the update. That’s the news. That’s all I have. I’ll know more tomorrow/this week, but here I am. My sister Kathryn is coming to D.C. today and my best friend will be here on the 20th. I am more than excited for both – and I’m hoping I can keep myself going and distracted. I am keeping the perspective that I’m lucky enough to afford the medical treatment (the shots alone are $3k) I need. I have some of the best insurance in the world, and I have specialists and options, where many women don’t. I’ll always fight for those women, and this journey has given me an entirely new perspective into what this could have been had I not been so lucky.
So, there’s no eloquent way to end this post so … I just … Will.