The C word, and therapeutic free association

I’m a bit overwhelmed lately.

When I try to go back through my journal and my mind to piece things together to make a coherent journal entry, I end up feeling sick and wanting to cry, because it feels like there’s too much wreckage scattered over too wide a range to sift through.
This in turn brings on a feeling of panic.

So then I start thinking, I don’t NEED to go back through any of my journal or my mind to piece stuff together, do I?

I could live in abject ignorance and therefore bliss, couldn’t I?

The reality is actually no, I can’t.

See, the next time the pain comes around, I’ll start wondering what I did to deserve it this time. I’ll start eliminating this or that food or beverage and things won’t improve like they never do, and I’ll be there feeling sorry for myself.

The reality is that I do know a lot about my condition, and I do have an obligation to share that information with others who also suffer from the same disease I do.

Okay, okay, this brings on another side conversation:

Whether those people choose to use the information I share with them is up to them.

So why is it my obligation when people might not listen to me?

Well… some does not equal all.

Right.

So I have this obligation to share the information that I find about my condition – namely, Endometriosis.
I’ve been creating a webpage on this site for nearly ten months now, which will be a resource for people suffering from Endometriosis, and I’m frustrated because I’m bogged down in the design and functionality of the site, when really I just want the information out there. This is the same thing that bogs me down in my astrology business – the design of the site vs. providing the service.

I’m not a webmaster. I just need to get my stuff out there.

I have the same problem with writing books. I don’t know how to publish the goddamned things, I only write them.

Clearly I need minions assistants.
I feel like this is what is holding my life back.


Ok, now to the point of this post; The C word, and the proverbial digging up of pieces of wreckage over the large geographical range. Let’s do this.

The C word started for me as a personal attack back in June 1st of this year. I was at a friend’s birthday party and someone I’d met at the previous year’s birthday party – someone I found out last year who also has Endometriosis – began telling me that the latest news on Endometriosis is that it’s a CANCER.
She told me that to get people to finally give her the respect she deserves with this disease, she’s been telling them all that she HAS cancer, and people suddenly are now sympathetic and understanding, whereas before that, she was treated like a hypochondriac.
I remember panic piercing my heart, and at the same time thinking she was full of shit with her cancer story. I told the woman that I’d have to research this myself, and that I wasn’t ready to hear that a disease that I have is actually cancer.

So I did some reading up. Turns out, the Experts had in fact been debating for some time as to whether or not Endometriosis is a cancer, and many have been calling it cancer-like because of its cellular behaviour.
It was then that I found out that women who have Endometriosis have a higher incidence of breast, endocrine and brain cancer according to the studies done over time.¹, ², ³

Further research today shows that survivability of the above cancers is dependent upon the stage at which it is found.
Here’s a nifty chart noting Breast Cancer survivability.

Endocrine cancer is quite a bit more difficult to research at the moment, since so many organs are involved. This is where fear really comes into play for me – I had Pancreatitis when I was 21 years old. Once the pancreas is inflamed, you always have a higher probability of a) getting pancreatitis again and/or b) getting pancreatic cancer.
So I guess for my own health history, let’s go with pancreatic cancer. Once again, fear is here. There’s only a 15 – 20% survivability rate if I’m reading the information correctly. It looks even more dismal on this site.

A preliminary search on brain cancer survivability doesn’t appear to turn up much info to go on, but this article from 1999 doesn’t help when it says doctors had recently doubled the survivability of patients with glioblastomas (a primary tumour) to 98 weeks. Uh, that’s a brain cancer survivability rate of a year and a half. Great.

Anyway, I had said when I found out that Endometriosis is cancer-like that I just have to keep my spirits high, but in truth this has been very hard for me to bear emotionally. I thought that I would have some pain relief from the surgery that I had back in February of this year. My surgeon said she was convinced I’d be pain free for a time. Even if the pain went away for months, I thought it would be a great thing. I believed my surgeon would help me. I simply opted to live in denial of the facts, because at that time, I had NOT been reading the stories of other women who go through what I go through. I just didn’t want to be bothered with other peoples’ pity parties. MY doctor said I’d be okay.

It wasn’t until my first week after surgery, when I’d had complications, that I sought out stories of other women who have Endometriosis. I was beginning to distrust my surgeon. I wanted to know from the horses’ mouths. So I sought out the stories of women who’d had surgery and what happened to them post-op.

That’s when I really started grasping the fact that my disease won’t ever go away.

Two weeks after surgery, I had my first period, and thought I would die, the pain was so bad. This was because on top of having the menses activate the Endometriosis I did not know was still inside me at the time, I was also still healing and my body creating scar tissue from the surgery just two weeks prior. So it was all very bad. I had started taking Yasmin on that first period after surgery. Yasmin is a birth control pill, so it has synthetic estrogen and progesterone in it. The medical establishment says it’s one of the lowest dose pills out there.

What they failed to tell me and countless other women is that the disease we have THRIVES on ANY type of estrogen.

Yet I felt like I *knew* that already. But yet I took the poison hormone pill because my doctor insisted that it would make me all better.

Within two months of starting the Yasmin, I was sobbing in the doctor’s office of critical suicidal ideation, with my man trying to convince the doctor not to lock me up in a mental institution, just get me off the goddamned hormones safely.

I’d only gotten to have ONE month free of the pain that leaves me bedridden, but at the expense of constant mild breakthrough bleeding, and more to the point, at the expense of my SANITY and well-being, while on the Yasmin.
As soon as I went off the Yasmin, all the heavy bleeding and massive pain returned.

Months later, on September 15, 2007, I’d discovered in an Endometriosis book what Deep Endometriosis is as compared to … I dunno… “regular” Endometriosis. I wrote to my surgeon to inquire why I was still in pain. I think I forgot to update my journal with her phone reply, and sadly I cannot do a transcript of the phone message because I accidentally deleted it. Anyway, she’d told me that the Endometriosis was not 1cm DEEP, it was 1cm LONG on the uterus, and she removed all that she could find. However, she said, there is still Endometriosis on the bladder itself, and that she could NOT remove it, lest she chance puncturing my bladder and therefore damaging me for life, as I’d have to wear a catheter for the rest of my life.

This was the first time in SEVEN MONTHS that I’d heard that I still had Endometriosis in my body. She’d told me at the time of surgery and at the followup that she’d in fact gotten it all out. Why the hell would she lie to me?

In shock, at the time I received her voicemail, I had called my surgeon back and thanked her for not puncturing my bladder. It was then that she urged me to try a new drug. She wanted to put me on Lupron. She wanted to remove ALL estrogen from my body, and finally admitted to me that it is the thing what feeds my disease. She said I’d have to live with perpetual menopause though – and didn’t see a problem with that, because it’d be BETTER than what I go through, now. I told her that I don’t see how hot flashes, night sweats, insomnia, decreased libido and dry cooze, as well as cancer risk is BETTER than what I go through now, cuz the above side effects to Lupron are DAILY, whereas my disease only takes me out MONTHLY.

Going back in time a bit now – from June to August of this year, a friend was sharing more stories and a website about her sister-in-law, who had terminal cancer. I’d been reading the website on and off for over a year, thanks to my friend, and I was trying to develop courage like this woman had. This woman – Lori – had Stage IV adenocarcinoma (cancer of an unknown primary); i.e. the doctors don’t know what caused her disease.
Sounds familiar? Doctors don’t know what caused my disease, either.

First was Lori’s story, then there was the acquaintance who told me that Endometriosis is a cancer. Then my own research confirmed that Endo is in fact so cancer-like, that when the medical Experts were trying to guage this disease, they chose to use the cancer staging system for Endometriosis.4

Then on September 21, 2007, I learned that another acquaintance had thyroid cancer (which is an endocrine cancer btw), so I read back through her journal (private journal only as of 2008) to catch up and LEARN what thyroid cancer is all about. When discussing her condition with two other acquaintances in September, they both replied something like, “Oh yeah I had that, too! No big deal, they just cut it out and give you radiation for it…”

Meanwhile, I’m sitting there going OMG HOW DID YOU GET THROUGH THAT AT THE TIME…

Then last night I read that an acquaintance’s mother has Stage IV terminal cancer, after having been in remission for many years.
After reading that story, I felt ready to crack. I’d had enough with the C word already. I’m tired of this piece of shit disease and I’m tired of the Experts saying my disease is associated with it. I’m tired of being guilty by association so to speak. I’m tired of having to constantly research whether or not the Experts have determined that Endometriosis IS a cancer or only cancer-LIKE, but in the meantime, nope, sorry, still no idea how it’s caused or how it’s cured.

I just want them to find a damned cure already for cancers and cancer-likes.

Then this morning, another acquaintance posted a website about lymphoma (which has been removed as of 2008) – it was the first I knew that he’d ever battled it. I listened to his and another woman’s story on that site, and listened to the music and looked at the art – which was all created while going through their cancers.

That’s when I finally cracked.

I am afraid. I’m afraid for what my future holds. I’m afraid to go through upwards of another twenty years or more with this disease without a cure (after reading countless women’s stories, Endometriosis isn’t even guaranteed to go away with menopause). I’m afraid that doing all these holistic treatments in search of relief will prove to have either a) been in vain or b) not stalled or stopped getting one of the cancers described above (see numbered citations above).
I’m afraid that all these people entering my life with their cancer stories is meant for a reason – a message – to try to let me know that the Endometriosis will either turn out to be cancerous or will have already allowed my body to develop one of the cancers listed above, and that it’s important to learn their strength as early on as possible.

But right now, all it’s doing is causing fear.

I don’t like living in fear. This has GOT to stop. I have got to get ahold of myself. I have spent EIGHT HOURS journaling all of this today, with several crying spells during the course of my writing.

I know too that I just came off my period, and I’m still detoxing from all the pain medication. That tends to make me very emotionally volatile.

*sigh*

At least now I can start my day. There was no starting until I expunged my head here.
I feel a bit better, now.

One Response to “The C word, and therapeutic free association”

  1. patricia

    the c word just makes me want to say UGH!

    So my sister had endo so bad that they completely removed her uterus. This was 10 years ago and she is absolutely fine and healthy these days.

    Lets hope that both of us do not need to worry about cancer of any kind.