07/11/2012: I've been tempted

Yep.  I have.  I've been tempted.  Tempted to do what, you might ask?  Then again, you might not.  Multiple blogs over the past month have received not one single comment.  And it hurts.  I've been tempted to walk away from this.  Because I don't blog to hurt.  I blog for support.

But I'm not walking away.  Because as much as I blog for support, I also blog because writing is cathartic.  And maybe someone out there can read my story and feel not alone in their endeavors; can feel like someone else out there gets it; can feel that while there will always be trials, there will also always be tribulations.

So I'm not walking away.  And I have a lot of steam to blow off today, so this'll  be long - but I swear it won't be the down and out you've read lately.  If you read it through, you should see peace starting to return to the world of Lori.  And that's where Lori likes to live.

This year has been hell.  No way out of it.  Endometriosis sucks and it continues to suck more and more out of me every day.  My ob/gyn referred me to a Reproductive Endocrinologist (RE) three weeks ago as RE's have tricks up their sleeves for endo treatments that ob/gyns do not.  This RE had to do more testing.  We know I have endo because I had the laparoscopy in March to diagnose it.  I've probably always had it - at least since I first got my period.  My painful heavy periods started when I was 12.  I got my period when I was 11 and believe me, I was incredibly shocked the first month I was literally floored with pain.  I remember where I was.  I was in drill team and I was marching in a parade for my town's annual fair.  And in the middle of our routine, bam.  Pain I never knew.  Pain I have not ever been able to do anything about.  But the good news was - it only happened one day a month.  And over time I figured out how to deal with  it.  Some months were worse, some months were better.  Occasionally I'd even have a month with no cramps at all.  Man how I hate those women who don't ever experience a cramp let alone what I get.  My typical cramps, so that maybe you can put it into perspective, require me to take an entire bottle of Midol (large bottle) in the matter of two days.  And even with all that tylenol onboard, there are times I still don't get relief.

Talking to the various ob/gyn's I've had along the way have elicited responses such as "You are getting old [I was 27] so have a baby.  That will stretch out your cervix and you'll never have cramps again".  I've also heard things to the effect of "Suck it up, Nancy".  After enough "you're crazies", I gave up talking to ob/gyn's about it.

In working with this RE, it appears I did do something right in my 20's, though.  I spent a couple very good chunks of my 20's on depo provera.  And depo provera is a great hormone for squelching endo.  It wasn't making it shrink, but it was helping it to not grow.  And that's probably why the proverbial shit didn't hit the fan sooner.

So my pregnancy blew it all up.  Pregnancies tend to give relief from endo.  But the bad news is endo tends to be worse after that same pregnancy that provided relief.  And wah-lah.  Here I am.

This all started, as you might remember from reading over and over and over again back in February when I first ovulated and got my period back for the first time after having Blue and Green.  And each month since it's just gotten worse and worse and worse.  How's this for perspective.  I have been taking vicodin solidly since February.  Ok, not solidly.  I've had two one-week breaks.  But other than those two weeks, I've been on vicodin since February.  That sucks.  That sucks royally.  That is a hard life to live.  And it's very rare that vicodin is enough to take care of the pain I'm constantly in.

My ob/gyn referred me to the RE because the pain just keeps getting worse.  The vicodin just keeps getting stronger.  Something's gotta give.  So what'd the RE do?  Took me off the vicodin, of course.  And gave me something stronger.  Stadol.

Stadol is generally only given to people in the hospital so that you can be monitored closely.  It's pretty potent.  I should not be walking while on stadol.  And yet I can.  The fact that I can, I'm told by multiple docs, speaks to the level of pain I'm in.

And I've iterated and iterated and iterated that my options are hormones, surgery or surgery.  Or, of course, pregnancy.  And we want to be pregnant.  But how do you get pregnant when sex hurts?

This RE has a different surgical trick up her sleeve.  But she first has to prove that I still have endo.  Theoretically, the surgery that was done in March should have bought me time to enjoy getting pregnant and then ultimately have the hysterectomy.  But it didn't.  It made it worse.  The surgery my ob/gyn did makes endo worse in about 15% of the cases.  Lucky me.  Always a stand out.  (haha)  But like I said, the RE has to prove I still have it.  And the only way to really do that - is surgery.  Which she can't do because it will make it worse.  Yay me.  I love conundrums.

She did do an ultrasound.  Nowadays my right ovary is behind my uterus, not to the right of it, and stuck to it. Burrowing into it.  Yeah, that wouldn't be painful.  My left ovary is also stuck to my uterus.  But at least it stayed to the left.  I have endo every where.  If she can see it on ultrasound...it's bad.  After the surgery my ob/gyn did, the pathology report claimed I was stage 1.  Stage 1 isn't terrible but it can be the most painful.  Stage 4 is terrible but it can be pain free.  And maybe back then I was.  But I'm not now.  The RE also ran blood tests.  Apparently there is a cancer marker that is elevated with endo when endo surpasses stage 2.  I have that cancer marker roaring strong nowadays.  She did other things, too.  And she is now a believer.  I have endo.

She has to do the hormone treatments.  I haven't asked specifically but I get the impression if she doesn't try this first, insurance won't cover the surgery.

But hormones will make baby-making impossible.

So here we are with Husby's stuff.  He had his surgery last week.  He is now thyroid free.  The surgeon was confident he got all of the affected tissue and the pathologist confirmed during surgery that it was the type of cancer we all thought it was based on the biopsy - and that was good news.  His is papillary and that is the most beatable of all the thyroid cancers (there are 4 types).  The surgeon thought the tumor was still contained within the thyroid, too, so, again, great news.  We will see the oncologist for the first time next week and then we should have dates for when Husby will do the radioactive treatment.  We know that happens 6 weeks after surgery.  And they can't start him on any thyroid hormone replacements until he's done with the radioactive treatment.  There will also be tests at 6 weeks to insure this hasn't spread.

So we have this month to try to get pregnant.  LOL.  Fun to do in the pain I'm in.  You know that good ol' scale everyone always asks about?  On that 1-10 scale, I'm never less than a 4.  Usually I'm a 6.  I don't go higher than an 8, just in my brain, because I do know it can always get worse.  But my 8 would probably have a lot of other people jumping off bridges.

The RE doesn't want to write me a blanket prescription for a heavy duty narcotic.  We get that.  But we are in a weird spot.  If Husby didn't have thyroid cancer and wasn't facing a radioactive treatment that could leave him infertile, it would be a no-brainer for us to shelve getting pregnant and just move on to hormones for me.  I can't live this way.  That is the simple truth.  But I have to.  At least for one more month.  We know that Husby cannot be involved in getting me pregnant after he takes the radioactive pill for at least 6 months.  And we also know that once they start him on the hormone replacement pill(s), it will take awhile to get him back to normal.  And until he's in the ballpark of normal, well, sperm production won't be great, either.  So we know there is at least 6 months of doing nothing and we don't know that it will all be roses after the 6 months (or so) are up.  He could be infertile and this could be a done deal.  And we are talking about banking some sperm in case that happens.  But we have this month.  We know everything works right now.  It just means a lot more pain for me.

We sat down with the RE yesterday.  I had a ridiculously bad night Saturday/Sunday night.  In the span of 4 hours I'd taken 6 vicodin and 6 puffs of stadol (it's a nasal spray).  That's beyond a shit load of pain meds.  And with all that, I was still an 8 on the pain scale.  If my husband hadn't just had surgery two days earlier, I would have been begging to go to the ER.  But he needed his sleep.  It turned out, though, that on Sunday I was out of pain meds.  That always seems to happen and in spite of knowing that I'll run out over the weekend and trying to work with docs to make sure it doesn't, they won't give me a refill on something I already have a refill available for - even though that refill I have available won't get me through the weekend. My docs want to monitor my consumption and are therefore limiting how much they write the 'scripts for.  I appreciate that.  I hate living like this and it's beyond scary to see what my consumption is.  But because they tend to only write for 3 days at a time...and it's usually 3 days with one refill, so another three days - and that's written on Monday.  That gets me through Saturday.  It never fails.  And then what?  Do you call the oncall?  It's not really an emergency.  But if you don't call the oncall, it means going to the ER.  Which then means it's an emergency.  I hate that.  This is already stressful enough.  But the RE freaked out over the weekend when I called the oncall for the refill.  I got the refill and was asked to call back on Monday to let them know how things were going.  It was a new combo of stadol, toradol and vicodin together.  So I called on Monday to let them know it wasn't working.  Know what they said/did?  Said stop taking it.

Really?  I'm in pain and I'm supposed to stop taking it?  So...yesterday I called about getting my follow-up appt with the RE moved up.  I wasn't supposed to see her again until the 20th - a week and a half from now.  She gave me vicodin on Monday and said that had to last until I saw her again.  She gave me 18.  I go through 18 in 3 days.  Hence me calling to get the appt moved up.  I talked to them at 8 and they said "let us see what we can do".  They called back at 8:30 and said they had a cancellation at 9, if you can get here you can see her.  I work 40 minutes away from where I live - and the RE is in my home neighborhood area.  Doing the math, I said, I can be there by 9:10.  They said that was fine.

Husby being home on disability is a blessing.  I was not about to do this appt alone and if I'd had to go to his office to get him, that appt would not have worked.  But because he was home, he was able to jump in the car and meet me there.  They called us back at 9:25.

One thing I like about the RE is she is also Husby's doc.  And with his stuff going on, this has been an invaluable referral my ob/gyn gave us.

Anywho.  They took my vitals.  And then they took us to a room.  We chatted with the medical assistant about what's been going on over the last week.  I think this is by far the best medical assistant I have ever come across!  She is absolutely amazing!  She left.  We sat there for about 10 minutes before the RE came in.  And she looked as scared of us as we were of her.

An hour and a half later it was a whole new world with a whole new outlook.

She is fully onboard with letting us have this month to "try".  She is fully onboard with helping me with the pain for this month.  She gets that we are in a very unique position.  Next month when Husby goes radioactive, I'll go on the hormones.  She's got a couple she's going to try.  She didn't say it but I have the feeling she doesn't believe they will work.  I am too far gone, at this point.  When she saw my c-125 (cancer marker) that rises with severe endometriosis, her whole attitude with me changed.  We reviewed all of my bloodwork.  I am back to being my whacky thyroid self.  It doesn't work right and the problem seems to be in the pituitary gland but it manifests in improper thyroid hormone production.

Isn't that funny?  I have the bad thyroid.  Husby's was working just fine.  He was never hyper or hypo.  Just ("just") had a nodule.  Mine doesn't work right...but there's no growth.  Something tells me I'll join him eventually in having this thing removed.  Anywho...

Because the pituitary gland doesn't work right, well, that makes sense as to why I don't produce enough progesterone.  Which makes sense why I never get a break from this.  Estrogen makes endo grow.  Progesterone makes it calm.  Doesn't knock it back...but calms it.  I never have enough progesterone.

Anywho, back to the RE.  She wants us to have the best chance possible for making something happen this month.  So we are doing a little bit of infertility stuff.  I'll get a "trigger shot" just before I ovulate that will help the eggs mature faster.  This could very well be how we end up with our next set of twins.  lol  Given that sex hurts the way it does right now, we will also probably do IUI.  That will get Husby's swimmers to the exact spot they need to be without causing me all the pain that sex does.  If we just do the trigger shot, our chances of getting pregnant go up.  If we add in the IUI, our chances of getting pregnant increase even more.  So effectively, we are giving it our all.  Finally, she's going to be giving me progesterone up the ying yang to make this body accept a pregnancy, to make this body hospitable for a baby to grow.

We always swore we wouldn't do infertility stuff.  But our situation kind of makes it a no-brainer to try as best as we can this month.  We don't know that we will have options in the future.  We will bank Husby's swimmers and if nothing comes of this month, we can decide what we want to do in the future.  But we feel like this is a new start.

Now...how's this for some divine intervention.  As Husby says, 'everything in my life has led to this point'.  So true for yesterday!

If this weekend had not happened, I would not have rescheduled the follow-up appt.  If I'd stuck with the original appt, that would be next Friday and next Friday would be two days before I should ovulate.  Very little this RE could have done to help us with this cycle, then.  However, because this weekend happened and because some things blew up, that led to rescheduling the appt.  I managed to get it rescheduled to yesterday.  Yesterday was the first day of this cycle for me.  Which means the RE has every available option for making the most of the cycle for us.  That just feels huge to Husby and I.

Add to that...I know I have pain in store for me this month.  I know that we will try our best to get pregnant but that doesn't mean it will happen.  And if I go on hormones, that does not mean the pain will instantly turn off.  From what I've read and heard, it will taper off.  She wants to try this for three months.  After that, she'd be willing to do surgery again.  But I now know that I have support in fighting this pain.  She gets us, she gets our predicament.  She spent a friggin hour and a half with us yesterday.  What doctor does that?  She heard us and we had a very good conversation.

Everything just feels right.  It feels like we are turning a corner.  Yes, Husby has hard days ahead of him.  No thyroid hormones means waning energy.  The radioactive treatment is going to be a nuisance at best, given what's involved in keeping distance and keeping everything "clean".  Because we have the babies in the house, he's going to ask to be admitted for that and that will also mean I won't be able to see him, most likely.  And that will be hell.  But we will get through this.  He will get past this.  I will beat this pain.

There have been times through this endeavor that I have felt like I am being beat.  I have always had to face things, endure crap, see hard times through...and I've always come out stronger and stayed positive through everything.  This.  This is not the same.  I am not stronger.  And I have struggled to find positivity at all.  I feel like I am being broken.  I can see how this might undo me.  I can see how this could beat me.  Endometriosis is a lot like cancer.  And it can kill me.  And I can see how it could.  But after yesterday's appt, I feel like I'm getting back to getting the upper hand again.  And that feels like incredible relief just by itself.

So here I am.  I was tempted to walk away.  But I can't and I won't.  You can not read me or you can read me.  You can not support me or you can.  Either way, I'm here.  And writing helps me.  So I'll just keep on keepin on.