Snowpocalypse 2014

 My HSG yesterday had to be rescheduled due to EVERYTHING in our area being closed for a possible snow day -- which turned out to be nothing in the end.

So already the schedule has changed as follows:

2/3 - HSG and Test Transfer  (Previously scheduled for 1/31, then 1/28)
2/4 - Start Lupron
2/7 - Last day of BCP
2/10 - If my body cooperates and gives me a CD1 then U/S E2, LH & FSH
        -  Start assigned study drug (either Gonal F, or Afolia)
2/15 - Labs & u/s
2/17 - Labs & u/s
2/18 - U/s and E2 (am) -- Possible Trigger Day (Ovidrel)
2/20 - Possible retrieval, start Doxycycline
2/23 - Possible transfer day
3/10 - Possible first Beta

But this is really a good thing... I think... I have started bleeding. [TMI AHEAD] On Sunday it was a light spotting, Monday it was more than what I would call spotting, but still not as bad as my regular period, Tuesday it was bad enough to require multiple tampon changes every couple of hours, and today - while dark brown in color - I am still bleeding pretty regularly.  There has also been some mild cramps, similar to the cramps I used to get with my period when I was younger - pre-endometriosis.  All this time I have been dutifully taking my BCP at the same time.  I haven't missed a single one.

The trial nurse seems annoyed by it, but not concerned at all.  "The Googles" show that this is not uncommon in women who have been off birth control for a while -- in my case I took my last Depo shot in 2003.  Hopefully this all stops by Monday so I can do my test transfer, HSG and pap without any problems and start my Lupron on Tuesday.

The Doxycycline is making both of us SO sick.  If I don't eat enough food before I take it I am sick to my stomach and Mr. R finds that if he has any food in his belly when he takes his HE feels sick to his stomach.  But we're sucking it up and taking it dutifully every day. 

Things are moving forward.  SO EXCITING!!

Scheduling Nightmares

Trial is moving forward.  I've been on Desogen BCPs for 10 days now and it's time to schedule the trial-required hysterosonogram and test transfer.  But here's the problem... my clinic is a 2.5 hour drive away and in a very busy part of Houston.  I am a horrible driver.  I am a scaredy cat.  I hate driving in places I don't know.  And I detest traffic.  This is a perfect storm for me.

Add to this the fact that Mr. R is in the middle of a major project at work, requiring incredible amounts of over time, PLUS he attends college two nights a week and has to leave work early to make it to the classes -- already annoying his bosses.

So my options are... go alone, do the HSG and test transfer and drive home alone.  Nurse says it's not at all painful... but I don't know about that.  I have endometriosis and so even the dildo cam hurts a little.

 Does anyone have experience with this combination of tests? What is the pain level afterwards like?  Am I being a big baby?

Since this will be 3 days earlier than they initially listed it on my schedule (they scheduled it on 1/31 in error, forgetting that docs are all in surgery that day) I am hoping that this might bring EVERYTHING forward by 3 days as well.

Right now it looks like this:

1/28 - HSG and Test Transfer  (Previously scheduled for 1/31)
2/4 - Start Lupron
2/7 - Last day of BCP
2/10 - If my body cooperates and gives me a CD1 then U/S E2, LH & FSH
        -  Start assigned study drug (either Gonal F, or Afolia)
2/15 - Labs & u/s
2/17 - Labs & u/s
2/18 - U/s and E2 (am) -- Possible Trigger Day (Ovidrel)
2/20 - Possible retrieval, start Doxycycline
2/23 - Possible transfer day
3/10 - Possible first Beta

My hope is that bringing the HSG up by 3 days will mean they'll let me start the Lupron and drop the BCPs earlier as well.  My mother is in town from Canada and she arrives on 2/5 and leaves on 2/16 it's driving her crazy that she will (as it currently stands) miss the possible retrieval date by a few days.  I am trying to explain to her that this schedule is organic and will change a lot over the coming weeks... if I even GET to retrieval!! But no... we're thinking positively... Of course we'll get to retrieval.  My body loves me right now, remember? haha

Also, not that I am complaining because this is an almost free cycle, but see all those morning u/s and labs?  Well I have to be there at 0730am and to do that I need to leave my house by 5am, and I will STILL get to work 2 hours late on each of those days, and this is a new job so they're trying to be understanding, but that is going to piss them off.  And you know what else?  I don't care.  I don't care at ALL.

New Year. New Us. New Home. Oh... and the trial has started...

Yep!!!  We called last week to check in and make sure that the trial was still going to happen as we hadn't heard anything in a LONG time.

Nurse: "Oh yeah, the trial has started."

Mr. R (with me listening in): "Ummm... so... ummmm..."  *Looks at me expecting a full-scale meltdown of tears and drama.*

Nurse:  When can y'all come in to sign consents?

Mr. R: "So we're still IN???" Then to me, "WE'RE STILL IN!!!!"

I started my period late Sunday night and called on Monday to schedule CD3 testing for the next day.

So here's what I know so far:

1)  The trial is comparing a new antagonist with Gonal-F.  I will either be part of the control group using Gonal-F, or part of the test group using the new product -- name escapes me, and I don't have paperwork with me at the office.   

Some of you may balk at my lack of knowledge around this drug that I am allowing them to pump me full of... but those of you in a similar can't-pay-for-even-one-IVF-cycle-on-our-own boat will understand... "You want to inject me directly with urine from some post menopausal nuns but I get a cycle of IVF for free?  Sure. Where do I sign?"

2)  The trial required that I have more than 10, but fewer than 20 on my AFC.  I passed this phase with flying colors.  (Huzzah!  My repro system did SOMETHING right for once!!) Mr. R was the only one conscious enough to pay attention to numbers... I was just so deliriously excited to be in there with the dildo-cam that I didn't hear a word out of the nurse's mouth.  (Yes, I said deliriously excited and dildo-cam in same sentence.) Per Mr. R's memory my AFC was 8 on Rt and 9 on left so 17 total.  Phew!

3)  I also had a blood draw and we're waiting on the results of that to see if I squeak in and can participate.  They need my FSH to be no higher than 10 [Edit: correction 15].  As you can see from my two previous tests my FSH numbers can vary greatly.  19.8 back in Dec of 2012 and 10 in May 2013.  So we have all kinds of prayers, fertility dances, candles, etc lit that my body plays along again and shows them a number they will accept.

4)  I also have to have an updated HSG and I am ashamed to admit that while my lady parts have been incessantly poked and prodded over the last year, I am overdue for a pap, so that needs to happen as well.

Now for the good news... I am actually as we speak taking the first of the drugs I will be required to take to start this cycle.  Okay, so it's only birth control... but it's seriously the furthest I have been so far in this journey and I was so excited to take that little pill this morning I could have cried.  I feel like I am actively doing SOMETHING!!!

Of course on Friday my results could come back with an FSH reading of 20 and I could be out of the trial in one swift second... but for today I am enjoying this TEENY TINY thing.  It's a step forward and I have GOT to celebrate this.

First Acupuncture

 Friday was my first ever acupuncture appointment.  It's on everyone's fertility to-do list, and has been on mine, but the cost is just too much for me to cover in addition to all the saving we have to do to pay for our own IVF.  I called the clinic on Friday morning as I still hadn't heard anything more about the trial.  We have a urologist appointment today (Monday) and I wanted to make sure I knew what we needed to tell the Urologist about the trial... Okay, being honest I totally just used the urologist as a reason to call so that I could hear someone say again that I was for sure in the trial...

I left a voicemail and heard back from them just before the acupuncture appointment time saying that yes, I am still in the study and that there is nothing special I need to tell the urologist about it.  Hmmm.... She also went on to say, "Oh!  I do have more firm dates for the trial."  Me: "Really? AWESOME!" Her: "Yes, we're looking at October."  Me: "Yes, last I heard we were looking at first or second week of October.  No firm start date yet then?"  Her:  "No, that's all we have for now."  Honestly, how is the month of October a firm date?  Is it just me?  I dunno. I wish they were more decisive and firm about this... this airy-fairy, up-in-the-air attitude makes me panic!  I just need to remember that this is going to cost us 10% of a full pay cycle and suck it up. Ohhhmmmmmmm Ohhhhhmmmm

So anyway, back to the acupuncture... I decided to get started with this since we are essentially about 2-3 weeks out from start of the trial and it needs time to work properly. I had no idea what to expect barring what I heard from other IF bloggers who have done this treatment.  Let's start off by saying that I didn't feel super confident in his abilities on walking into his tiny office.  Firstly, he was late. Secondly, the office was decorated with cheap Chinese tchotchkes and smelled like massage oils. Thirdly, my heart kind of sank when a 6ft tall blonde man walked into the room and introduced himself to me as Dr. H. Am I wrong for wanting a Chinese person practicing acupuncture?

He glanced over the 12 pages of history I had meticulously filled out and then said, "So you want to get pregnant eh?" Understatement. Of. The. Year.  He then walked me through to the treatment room. Oh my!  Bordello red walls.  Giant Chinese fan. And my favorite part... leopard print silk sheets... cos nothing says "China" quite like the print of an animal found in Africa....

He started with the needles and I was pleasantly surprised by how painless they were.  I won't say that you don't feel them at all, because you do, they feel like a tiny scratch and then it's over.  I had them all over my face, legs and feet.  A couple of them did hurt though.  There was one just below my left knee that felt like he had pressed down on a bruise.  I yelped and he said, "Yes, that is your spleen.  That's the source of your blockages." Another on my other leg was also quite tender and he said that was my stomach, also where he believed I had some blockages.  The only other painful one was under my skull on the right where I have a swollen gland, and have had as far back as I can remember. He inserted the needle right into the gland and it HURT. He had to remove it and go at that spot from a different angle.  He also pinched down on my stiff shoulders and said that I was clearly very stressed as he inserted a needle there.  Note to self:  Tie up your hair for your next appointment! Aside from the needles he said were in my ovaries (didn't hurt at all) that's about all of them. He then lowered the lights and left the room for 30 minutes telling me to relax and sleep if I felt so inclined.

I've been wrestling with the whole "think positive!" thing... I hear it from everyone.  I am sure you do to? I have found in my life that if I think positively about something I really want my heart takes over and runs with it and before I know it I've planned out and pictured every single moment related to that thing.  I go through positive images so much in my head it's as though I've lived them.  And 9 times out of 10 it falls through.  Positive thought doesn't work for me.  But what if I NEED to think positively for the IVF to work? All I know is, if I open my heart and dare to picture myself with a baby at the end of all of this and it doesn't happen my heart will break into a million pieces and I don't think I will ever, EVER get over it.  But I feel like it's important to try it.

So I've decided that I am going to try a little moderation.  During my acupuncture sessions and ONLY during these sessions, in the 30 minute  relaxation time I am going to picture the blockages being freed, my eggs coming back to life and my ovaries becoming bountiful.  I will picture the whole process from start to finish, step-by-step, ending with me holding my child in my arms. As he turned the lights down I was excited to try it.  Excited to allow myself for the first time to think about a positive ending to all of this. And guess what?? I couldn't do it.  I got all the way through to the IVF process in my head several times, but when it came time to see the sac in my first ultrasound I stalled.  No matter how many times I brought myself to that point I just couldn't bring up that image in my head.  It's like my body is acting in self preservation mode. 

There are two ways I could look at this: 1)  I am about to spend a LOT of money on a no-hope project. 2) I couldn't picture myself driving when I tried it before I got my license and that worked! Maybe this will be the same... I dunno... I guess I will keep at it during my next appointment. 

I was also interested in the traditional Chinese herbs everyone has been talking about, but it seems my guy (who I should add is the ONLY acupuncturist within a 45 minute drive from my house) dispenses little pills in decorative bottles covered in Chinese text.  I am to take 8 of one and 8 of another with meals.  He doesn't seem to have any dried herbs, or anything like what everyone else has described and I had to ask him for these... he didn't recommend them to me.  One is labeled in English as "Relaxx Extract" and the other "Six Noble Combination".  I can tell you that these taste AWFUL and have to be taken with a liquid that has flavor.  Water is not going to cut it with these little suckers -- which resemble rabbit droppings.

Taking a DHEA Break

Urg... I was going to save the next supplement update for 2 weeks time and give you a full month feedback but this change came with such a dramatic hormonal performance I feel like I should add this in right now so everyone is aware of this potential side effect.

I mentioned in another post how I started feeling a little more emotional than normal, but I figured it might just be DHEA, a little PMS mixed in with an emotional day (Father's Day) and lack of sleep.

Last week I was bouncing off the walls with emotions.  Literally up one second and down the next and then crying, then angry and then outrageously happy or excited.  By Saturday I was a mess.  I was having panic attacks, crying -- I mean SOBBING -- at the drop of a hat and one minute I felt like I wanted to slap Mr. R and the next I wanted to hug him and just cry.  Bless him he was so patient in dealing with me and it gives me hope for how he will be when it comes time to hit the hormones for treatment, but really  this was NOT fun.

I am convinced that it is related to the DHEA and so I stopped taking it on Saturday.  Yesterday (Sunday) I felt a bit better, not as emotional and today (Monday) I feel better still.  More in control of myself.  I plan to give myself a week long DHEA break and then maybe bring it back at a lower dose, and go for a week on, and then a week off, and repeat like that until we stim.  Dr. C has already told me no DHEA after we get started.  He's not a big fan of the stuff.

Anyway, if anyone out there is following along with the supps I am taking, I would advise you to keep a close eye on the DHEA because WOWZA did it ever cause a reaction in me!

Discount IVF Meds

Woohoo!  A little good news today from EMD Serono (remember the Compassionate Care application I submitted for up to 75% discount on my Gonal F and Cetrotide).  I faxed the application paperwork to them on Tuesday evening, and received my card and number, etc today by email.  What a relief! (and such amazingly fast turnaround time.) 

I realize that's just a discount on 2 of the 6 meds I will be needing, but as has been my motto through most of this planning stage, every little bit helps. 

I have discovered that there are two other programs that may offer reduced rates on meds that I need.  Heart + and Design Rx.  However, these two programs are pharmacy specific I am told by my finance rep at the RE.  In other words, only certain pharmacies will accept the discounts, and the pharmacy that my RE prefers (read: is pushing me) to use is not one of them. 

Heart +
This program is, again, not going to save thousands of dollars.  The website states, up to $500 though only one of the meds on my list - Novarel - is covered by this plan, and I have no idea what that costs, so I am quite sure that the full $500 savings won't apply here. Heart + offers eligible patients savings on prescriptions for Bravelle, Menopur, Endometrin and Novarel.

DesignRX
From their website:  DesignRx partners with pharmaceutical manufacturers through its elite network of specialty pharmacies to offer unique programs to help patients with little or no drug coverage. The DesignRx pharmacies are carefully chosen to participate in the network based on their distribution volumes, geographical locations, experience within a given disease state, and overall patient customer service.
I seem to have registered for this one, but really it's all not very clear.  I need to do a bit more digging to try and figure out what it is that I signed up for, as there seems to be some type of membership forum attached to the site as well.  At any rate, they discount Crinone 4 which is on my meds list.

Here's where I could use some help/advice/opinions...

1) Have you ever used either of these programs (Heart + or Design Rx)?  Were they worthwhile?

2)  What pharmacies do you recommend?  My RE likes Freedom Pharmacy but they really push them a lot and I get the feeling that theirs is a mutually beneficial relationship - which usually does not bode well for patient prices.  I don't mind going through multiple pharmacies, I just need to keep the costs as low as possible and I would at least like to have something to compare Freedom to, to make sure that I am getting the best deal.

Any advice from those of you who have walked this road before me would be GREATLY appreciated!!

Supplement Cocktail - 2 Week Update

Today I finally got my order in and have added wheatgrass, Maca and Chaste Tree (Vitex) to my daily supplements.  I've already learned that PB protein shake and wheatgrass should never, NEVER be mixed together... under any circumstances!  Awful stuff.  But given the price of wheatgrass I gulped it down like a good girl anyway. :) 

As a reminder, here's what I am currently taking daily:

CoQ10 - 800mg/day
DHEA - 75mg/day
Royal Jelly - 456mg (concentrate) / day. If you have the jelly itself you need 1500mg/day
Fish, Flax, Borage, Omega 3,6,9 - 2 caps/ day
Melatonin - 3mg/day
Prenatal Vitamin - 1/day
L-Arginine - 1 cap 3x/day
Black Cohosh 3 caps/day
Ginseng - 1 cap/day
Thai Ginger- 1 cap/day
Vit D3 - 1000mg / day
Baby Aspirin 1/day
Red Raspberry Tea - 1cup/day

I have now added:

Maca - 2 caps/day
Vitex - 2 caps/day
Wheatgrass - one shot/sachet

Still waiting on :

Myomin
Pregnitude

Actually, I've been taking my other mother-load of supplements for close to two weeks now and I haven't yet mentioned anything about what I am feeling as a result, aside from this post where I thought maybe the DHEA was partly to blame for my agitation.

Really there hasn't been much to note.  I suppose I have been noticing more "twingy" feeling in that general area, but then I am more focused on it than normal. 

I can definitely say that this has been the most painful period I've had in a while, and for someone with endometriosis that's saying something!  This month has been the kind where you get up at night and pace and cry and rock yourself back and forth and give in and take a hydrocodone to numb the pain.  This may be TMI... but it's important for me to track this... I am usually a clotter.  Every period is just horrendous with the large clots but this cycle (maybe from baby aspirin) the clots have been MUCH smaller, but the flow has been heavier. 

My skin has been a little oilier than normal, and I have super oily skin to start with so I am not enjoying that.  Also I have had a small break out, not unusual for me at this time of the month.  I will keep an eye on it and let you know if it continues past this week.

Other than the above my nails are growing long and strong as you'd expect and thanks to the melatonin I am sleeping deep and full of crazy dreams.  Oh!  And I have definitely been more energetic and am getting more done in the day -- but then this has been ramping up slowly with my weight loss as well.  I kind of feel half as though I am "nesting".  Clearing out closets, and cleaning behind large pieces of furniture.

I'll check back after a full month with a recap, but so far I am not experiencing anything that would deter me from continuing to take this cocktail of supplements at all. Everything has been mild, apart from my cramps - but they suck anyway. On the flip side, I am also not experiencing anything that leads me to believe that this wonder-mix is working it's magic.  We're going on blind faith here people... isn't that pretty much ALL we do in dealing with infertility? 

The Results Are in!

We met with Dr. C, excited to get this show on the road.  Not nervous at all about the findings.  Remember, I was so sure that the problem did not lie with me.  And Mr. R already has 2 kids, so he won't have a problem.  We're going to drive the 1.5 hours, sit in a chair, have the good doctor pronounce us perfect and schedule.

"I am glad that you are BOTH here.  I have some bad news..." I don't think I breathed as he spoke further, "From the genetics side, you show to be a carrier of Andermann Syndrome.  Mr. R you are NOT a carrier, so that isn't going to be an issue.  I would warn brothers and sisters to test for this before getting pregnant." *deep breath in* "No worries there then, but R tests show that you have a genetic mutation called methylenetetrahydrofolate reductase."  *WAIT! What??* "It's more commonly referred to as MTHFR but luckily the kind you have is easily treated with increased folic acid." *Deep breath out*

"I wouldn't worry about this at all. So that's the genetic side done. Now here comes the serious stuff..."  *Deep breath in* "Law requires us to complete a disease panel before continuing with IVF.  Unfortunately, we were unable to test Mr. R because of his insurance, but I would now suggest that you have him tested because R your results came back showing that you have both Chlamidia and Syphilis..." "I HAVE WHAT?!?!" "The levels show that you've had the Syphilis for a very short while, you've picked it up in the last 3 months." *GLARE at Mr. R* "Now, the Chlamidia you've had for a while.  A year or more.  But that is easily treated with one simple pill.  I'll write you both a script today." Mr. R glares back at me, and I start to cry, then sob uncontrollably... HOW did this happen?  I've been in an almost sexless marriage for 6 years..." *lightbulb* "That cheating b@stard!!" "Of course, as I am sure you know we will have to report this result to the CDC.  They'll be in touch to follow up with you.  You're going to need to contact any partners you've had in the last 10 years.  I'll prepare a referral to an Infectious Diseases Doctor for you too." "Oh you BET I WILL!"

"Okay, so that was rough I know.  But I have more sad news." *my head is going to explode* "We did a hormonal screening.  The results are pretty dismal.  Would you like to take a minute, get a glass of water before we continue?" "Ab-so-lute-ly NOT! Go ahead." *thinking this is all irrelevant because there's no way I am going to have a child with the man who gave me Syphilis* "Your AMH level is low enough that we suspect you're deeply premenopausal.  The elevated FSH level backs this theory up, and your estrogen level is lower than we'd like it to be."

12/12 RESULTS:

AMH: <0.16
FSH:  19.8
E2: 17

"What this means is that you're almost out of eggs and out of time I am afraid.  With this AND your endometriosis you need to get moving.  I suggest taking care of the infections and getting back to me as soon as possible.  At this point I'd say you have about a 15% chance at success with your own eggs."

I literally at this point jumped out of my chair and started heading for the door, tears streaming down my face.  After fumbling with my debit card and waiting for the nurse to get off that infernal phone I left the card with Mr. R to take care of the co-pay and kept on walking.  When he met me at the car I collapsed in a fit of hysteria.  Mr. R coaxed me into my seat and tore off in the direction of the nearest pharmacy to fill the script so we could take care of the first issue.  Z-Paks in, we headed for home, me bawling down the phone line to my mother in Canada.  I didn't want to approach the topic with Mr. R.  I no longer trusted him - or any man for that matter!

Once home we spoke for I think the first time.  We talked it over, went over dates, looked everything up online -- AWFUL, AWFUL information that scared the hell out of me! The Chlamidia is possible, my ex was never interested in sex, so maybe he had something on the side.  But the Syphilis? Mr. R had me convinced that it was impossible that it came from him, and I KNEW it wasn't from me." I made the appointment with the Infectious Disease doctor.  Mr. R went for blood tests. I went for a second round of blood tests.  I spoke with the CDC and gave them contact information for my partners in the last 10 years... Mr. R received his phone call from CDC and a week flew by.

Our infectious diseases doctor, Dr. R. (Lot's of Rs to track here right?) read the results off to me... "Mr. R you show no signs of exposure to either Chlamidia or Syphilis." *uh-oh gulp!* "R, you ALSO show no signs of exposure to either Chlamidia or Syphilis" HOLY CRAP! What?? "Now this could be a faulty reading, so we're going to need to retest to be sure and to satisfy the CDC, but as far as I am concerned this was a lab error." I cried like a baby.  I cried as I paid the happiest co-pay of my life.  I almost floated all the way to the lab (You're surprised? Tell me you wouldn't have made the lab your first stop after leaving that office?)

Another week passes and we receive a call from Dr. R, "Yep, still no signs of anything.  I am prepared to clear you.  I'll inform the CDC."  I literally hung up and the CDC were already calling to hear my results.  With everyone satisfied that I was not a walking cesspool of STDs, and the clearance notice being sent to Dr. C so that we could resume IVF planning we went out to eat dinner and celebrate.  I mean, what does one do when they find out that they don't have Chlamidia or Syphilis, right? (Do you know, my skin still crawls every time I say, or write those words.  In the weeks of waiting and testing they were forbidden in my house. We called them #1 and #2).

So there we were... disease free, genetically sound, and almost out of eggs.  It was time to move this forward.