Just another step down the IVF trail....

There's not much to report at this stage of the game.  For the past two days, I've just given myself the injections of Gonal-F at night (225IU) and Menopur in the morning (3 vials).  This morning (cd 19 if you are keeping track) I had another bloodwork draw and scan.  Dr. G commented that my lining was thin but that kind of makes sense.... I've been spotting since stopping the bcp's.  Only just stopped spotting yesterday.  He said we will just have to wait and see what the bloodwork reveals.

It revealed that my estrogen was 400 something and that I would continue on the current levels of injections until Wed morning at which time I will have more bloodwork and another scan.

I can tell you that while the needles are the same size as those used for insulin, the medication inside is not.  All I can say is OUCH.

This is the assortment I use to mix the menopur.

 I don't actually use the long needle at all, just the syringe part of it.  I screw off the needle end, and screw on the clear plastic "Q-cap" to mix everything. Then I screw off the Q-cap and screw on the half inch needle for the actual injection.

Honestly, sticking the needle in does not hurt at all, at least not me.  What hurts is the medicine (menopur the most) going in.  It burns and I can feel it spreading.  I have found that icing the area before hand helps tremendously.  The tonal-F is not nearly as bad.  But my IVF nurse had given me the advice to let the filled syringe sit for 10 minutes to come to room temp.  I have done this and the pain is minimal.

But my tummy really hurts.  I really do feel like a pin cushion. It feels slightly swollen, but hugely bruised.  I am wearing looser clothing so as not to rub up against the area.  Side effects are not too bad....some headaches and dizziness but only when I bend over, like to tie my shoe.  And emotional.  I feel like I want to cry over the silliest little things.  Trying to keep that in check so as not to make my husband crazy.

Is it difficult?  yes.  Unbearable?  No.  I don't like it, but so far, it's nothing I can't handle.  Still not trying to worry about if I will have enough eggs retrieved to do this, still not thinking about getting through all the cycles in my package and not getting pregnant.  I have been searching my heart...Is this really worth it?  Do I really want another baby.  I can honestly and sincerely say yes.  I want it as badly as ever.

And so ends cd 19.

Day one as a human pin cushion - drugs for IVF

Not much to report today.  Absolutely nothing happened on cd 15 as I was waiting for my appt today.  One minor note, I started spotting last night which had me slightly worried.  But I thought it made sense seeing as I stopped the bcp's 2 days ago.  The IVF nurse confirmed this was completely normal and nothing to worry about. Only other item of interest was this great big expensive box arrived on my doorstep.  $4300 worth of fertility meds.  I have to admit, even with all that money spent, it certainly did not feel like Christmas.

Had an early morning bloodwork and ultrasound.  The bcp's did their job and everything looked good. They said my ovaries looked "fantastic"which made me laugh.  I made the comment "at least something in my body is doing it's job!"

I do want to interject here.  While not eating straight paleo, I have been strictly gluten free, and I do tend to try and lay off the grains.  I think that has had a seriously positive impact on my ovaries.  I've noticed on the ultrasounds, those "string of pearls" have been conspicuously absent.  I think my inability to get pregnant really falls under either my age or that "unexplained" category.

Anyway, my "fantastic" ovaries were showing about 20-25 follicles on each side.  I am hopeful that that means we will have a very successful retrieval.

Anyway, around 2:30 I got the call that everything looked good and my instructions for the weekend.  I'll take 225 IU of the Gonal-F tonight, tomorrow and Sunday.  In the mornings, I will take 3 vials of the menopur.  Time to whip out these babies....

Don't they just look scary?  The good news is, these are just used for mixing the menopur, NOT for injecting into me, thank goodness!  The actual needle is much smaller, no bigger than an insulin needle. I'll try and remember to take a picture of it tomorrow so you can see.

Honestly, I was more nervous about mixing everything up.  The vials actually come with the meds in a dry powder form, and you have to add a special water to it. But my IVF nurse had walked me through it, then suggested watching videos on youtube.  So that's what I did, I laid everything out on my computer desk, watch the video and did my thing.  It was just like an insulin shot (I had gestational diabetes with both boys) and it did not hurt one bit.  I chose to do it myself into my stomach.

DH tried giving me insulin shots back when I was pregnant with both boys, and frankly he's horrible at it.  He either jams it in (the man has strong Scottish genes) or loses his nerve at the last second and goes too slow.  In any case, it hurts and I really am OK doing it myself.

So shots over the weekend, then I go in Monday to see what's happening. And that wraps cd 16.

Name that price! How much are the drugs?

So cycle day 14 brings the quest to actually acquire the drugs in my possession.  I have to admit, I put it off as long as I could because I am still waiting for them to say "You are too old, go away.  Your body is most certainly NOT a temple let alone an incubator for a little life.  Go home!"

But they haven't. They continue to insist I have a chance at this.  On Monday, if you recall, I had a very stressful day pricing everything.  While it was upsetting and frustrating, I HIGHLY recommend this.  Here's why.  For the past how many years, they've always recommended Rosemont Pharmacy so of course I wasn't surprised to see it on my list of places to try.  Their price for Gonal-F?  $810 per vial.  I need 5 vials for a total of  $4050.  Cornerstone in Willow Grove, the company I chose to go with?  $384 a vial after they applied some sort of rebate (they applied for me and gave me the after rebate price).  That totals $1920 for a savings of $2130!  That's huge!

The other thing Cornerstone did was, they mentioned that cetrotide could be taken in place of Ganilrelex for a savings of $106.50 overall.  So I called the nurses and asked if that was OK and it was - hooray!

The other good news is that I did indeed qualify for one of the Compassionate Care programs and they gave me 50% off the price paid for gonal-f and cetrotide.  So take that off the prices listed above and I ended up with a total bill of $4300 instead of the $6000 ($7300 if I had gone with Rosemont) I was looking at before I started pricing.  So do that if you can.  These are all the cash out of pocket no insurance coverage prices by the way.  I can't tell you what it looks like when insurance covers some or part.

My next challenge was paying for them.  I had maxed out my credit card to pay for the IVF services last week and it was a race to see how quickly they would post the transaction my account,  I could pay that electronically and set my balance back to 0.  By 11:30am, my balance was back to 0 and I could call the pharmacy!  It seems like everything is starting to fall into place now, and I am catching some of those breaks...like Compassionate Care taking pity on me and processing my application in 3 hours instead of 3-5 days.

I did have a back up plan. The worse case scenario is I would take the money out of my account in cash and drive the 2 hours to Cornerstone.  But a) who wants to drive around with $4300 cash in their purse, and b) I wanted the credit card points.  If I have to go through all this, I'm at least going to get an airline ticket to someplace warm and sunny out of it! ha ha ha

So after running to the UPS store to fax in the script, my Compassionate Care card, and my insurance card (there were three things that they thought they could get covered in my insurance - the antibiotic, the immunity rejection drug medol and the esterase -estrogen- that all have uses outside of fertility) and several back and forth calls, I am now patiently waiting for my big expensive box of drugs to arrive. 

I am supose to start Friday.  Again, I am compartmentalizing the ideas of all those shots, of what if this doesn't work, how many embryos to transfer, will I even get enough eggs to make embryos..  If I think too long on any of those, I start to get a little crazy.  I noticed yesterday during my walk, that I made a conscious decision NOT to think about anything IVF related.  I  needed a break, and frankly, I think breaks away are good for me.  I will take each day, and it's decisions, as they come.

And so ends cd 14.

BW, scan, Hysteroscopy, IVF Mock transfer and SA....Lions and tigers and bears, Oh My!

As you can see by the title, yesterday was a busy and let's be honest, scary day.  Bloodwork and ultrasound were no big deal.  I bet after 10 years of trying to have babies I've had at least 100 of each.  Those turned out fine and yielded us good news.  My estrogen was great, as was my progesterone... my system was "dimmed" as they put it, so I could stop the bcps (i had been on them 10 days total) and get ready to start the injectible drugs soon.

It was the after that, that had me so nervous.  All the reports I had found online were scary.  "Excruciating"  "painful"  "lasted forever" were just some of the keys phrases skyrocketing my blood pressure from it's healthy normal of 120/60 to a crazy high of  160/90  (um...the last time it was that high, they admitted me into the hospital and performed a c-section 20 minutes later!)

I have to stop and give kudos to my Dr.  If you are in the philadelphia area, and are looking for a great RE - check out Dr.  B. Gocial.  He's amazing.  He's never made me feel dumb for asking silly questions or being scared or anxious, and when you have bad news like a loss (or two) he is gentle and sympathetic.

So while I was shaking and on the verge of tears, he literally stops and touches my arm and says, "What exactly is scaring you?" in the most concerned tone.  I flat out said, I was scared it would hurt, and I was scared he would find bad news and say "Sorry, game over, your uterus is a mess!"

He was very honest with me, described to process and indicated the discomfort wouldn't be bad, just talked about the cramping.  Then he said, he's seen my uterus on ultrasound enough to know there probably really wasn't a problem.  That he wouldn't even order it except we were doing an IVF and they just want to be sure.

I can hardly fault that logic. Yes, before I spend $25,000, I'd like to be sure too, that there's at least a chance!

So while I was still terrified, it helped to know my Dr. was sympathetic to my concerns.  So I left the office and went to the adjoining surgical suite to wait my turn.  Turned out, there were a lot of women "ready" so I had to wait while they performed FIVE retrievals!  yikes, that's a lot of eggs!

My friend, "A" had said really the worst part about it was the "uncomfortably full" bladder you need to go with.  OMG she was so right! That really was the worst part.  I mean, how much do you actually have to drink to be "uncomfortably full?"  I didn't want to not drink enough, and then they couldn't do it, but I've always been a bit of a camel, not needing to go to the bathroom too often.  So I drank a glass of water when I awoke, a glass with breakfast, and grabbed a 24 ounce cup of decaf to drink on the way.

My eyes were yellow I was so "uncomfortably full."

And did I mention they were running behind schedule?  Yikes!  But finally it was my turn.  The nurse was thankfully, very kind.  I was led to a changing room with lockers.  They had me change into a surgical gown, hair cover and footy socks (I love those socks with the little grippy things on the bottom... I had to contain myself from searching the cabinets to take home a stash of them). I locked my  clothes, purse and phone in a locker and went out into the hallway.

The nurse greeted me almost immediately and led me back to a large room divided into three sections made into private rooms by  hospital curtains.  Instead of a bed was a large recliner chair covered in surgical pads.  I took a seat, and they immediately gave me a warmed blanket to cover my legs.  They went over my post-op instructions which was basically "go home, you're done" and then the, Dr. G checked on me once more.

In a few minutes they walked me into the OR.  I took a seat on the table which is just a glammed up version of what's in the exam rooms.  But the stirrups were much more robust and padded.  And then it was time.

They did the mock transfer first.  He inserted a speculum joking about how they haven't redesigned those things in 150 years.  No kidding!  I, like I'm sure most, really hate those things.... Do they have to be so heavy?  Every time they put one in, I feel like it's pulling me down.  I'm waiting for the day it does eventually fall out, pulling all my girly bits out with it....

Anyway, next was the insertion of the catheter.  The only hard part about that was the nurse pushing down on my belly (read "uncomfortably full" bladder here) with the ultrasound device while he did the mock.  It was over in about a minute, seriously.  Felt much better when they were done pushing on the pee bag.

Next was the hysteroscopy.  Huge deep breaths.  I have a history of panic attacks, and I felt one coming on.  My husband taught me to breath big deep breaths when this happens, and so that's what I did, and focused on relaxing. But really, it honestly was nothing.  I felt some minor cramping, but honestly the HSG I had done 5 years ago pre-Noah, was much much worse.  It was a little gross after, as the saline dripped out but it was done.  And again, it took like maybe a minute or two at the most?

They did say I could spot so it was a little embarrassing when they asked me to scrunch the big paper covers between my legs and walk down the hallway to the bathroom.  I prayed the husbands of other patients were all ensconced quietly behind the little curtains and they were.

And I was done.  I went across the hall back to the changing room, got dressed and left.  All that worrying for nothing.  I wonder if the difference between those that had so much pain was that they hadn't had children before?  I had been reading a blog where the woman said for her first child, it was excruciating, but the second one was nothing.  I don't know, but it sounds like a good theory, anyway.

I was incredibly exhausted getting home, but I'm sure that's more about the emotional energy output and the lack of sleep from the night before.  I did experience some cramping but it was closer to late afternoon.  Nothing I couldn't stand, but let's just say I curled up on the couch and let DH make dinner for a change.

So that's it for cycle day 13. Tomorrow is the quest for drugs.

One final note, in all the blogs I found describing this experience, it was from the point of view of donor/adopted embryos.  Just want to clarify that this will be a different process because we will be using my own eggs.  So the drugs will be different as I prepare for the ER - egg retrieval.

....and I haven't even started the drugs yet

This process is not easy.  There is no way through it, but through it.  I have found myself wondering if indeed I am strong enough to do this.  I remind myself that thousands of woman go through this process all the time.

Today's struggle has revolved around medications.  I honestly did not expect to move forward so quickly.  In my mind, this was a multi-month process.  So I was shocked that just one week to the day after testing negative for last month's IUI cycle, I was starting BCP (birth control pills) for an IVF cycle.


(brief pause for back story....At my initial consultation in Feb to see if I would even be a candidate, Dr. G told me that both my AMH levels and both FSH levels on a clomid challenge test had to be normal or my chances of successful IVF using my own eggs would be less than 2%.  No one in their right mind spends $25,000 dollars on something with those odds, so we went ahead and did those tests.  On the clomid challenge, since I was indeed responding, we decided to go ahead and do an IUI on Easter Sunday of all days,  for one last attempt.  How I hoped that would be successful, so I didn't have to do the IVF but as usual, bfn.... (big fat negative).

OK, back to our normally scheduled programming.  So I test negative on Sunday night which was 14 days post IUI, and they call me Monday to see if I want to come in for a blood test beta.  They agreed a negative home test was sufficient and told me to call when my cycle started to schedule my 3 day baseline blood work and ultrasound.

I posed the question, if I was going to start an IVF cycle, why do they do that?  She gave an iffy answer that didn't make sense at the time.  Now I know, it really was because this process moves quickly and they really do need the baseline.  I couldn't come in on cd 3, but they said cd 4 was just fine.  Again, it was a Sunday morning just 3 weeks post my failed IUI and I started bcps.

Why bcps?  It slows down your system in preparation for all you are going to do to it.  My IVF nurse explained, Lupron or Ganirelex is taken after the stim drugs to prevent you from ovulating before the retrieval.  They act like an "off" switch.  The bcp's, she explained act in the same way, but as more of a "dimmer".  So I will take those for about 10-12 days or so, and they will check my levels via blood work.  When they think I'm ready, then they will start the injectible drugs.  Hence today's great big stress ball.

They are incredibly expensive.  I have a list of 10 pharmacies they gave me to try.  Your local Walgreen's or CVS generally doesn't carry these.  The first one I called refused to give me prices over the phone, only in person.  They are a full hour away.  In fact the closest one was still 45 minutes away, some were in other states.  *gulp*

In conjunction with getting prices, I was trying to ferret out information on the Gonal-F cares discount and rebate programs for the uninsured  (I sound like I'm homeless, don't I?  a real charity case....depressing).  This information seems to be a closely guarded secret.  The income part is "proprietary" so you can't tell at all if you qualify until they've processed your application.  Normally this is no big deal, but I didn't have that kind of time.  According to my IVF nurse, I will probably start these drugs at the end of the week!  And they pharmacies need the discount card in hand before they will honor it.  I can't go next week after the fact and say "Can I please have my thousand dollars back?"

Are we seeing my stress here? We are talking about $5000 - $6000 worth of medications here.  So even a 10 or 20% discount is significant.

I will share the name of one pharmacy only  because they were so very kind to me.  Freedom Pharmacy in MA.  And they ship overnight for free.  Most likely thought, I will go with Cornerstone in Willow Grove, PA.  They will ship overnight for free too, and they had better prices, and had some rebates already in house that they would file for me and give me upfront.  That one little act saves me almost $300.  And they said, if I do end up qualifying for the compassionate care program they will honor that in addition to the first rebate.

I don't feel like we will be approved though.  I think they will look at Rob's income and say no.  They don't ask important questions...  They don't ask "Are you paying $17,000 out of pocket cash up front for the medical procedures?"  They don't ask " Have you been paying off a $26,000 adoption for the last 5 years?"  Nope, just a tax form for proof of income.  But hey, if you don't ask, you don't get, right?  So I'm asking.

The last few days, I've found myself incredibly emotional.  I'm not sure why since I haven't even started any of the hormones or ovary stimming drugs yet, you know, the ones that supposedly make you a raving lunatic?  I just find this whole thing very scary.  I am intensely scared of tomorrow's hysterscopy and mock transfer.  No drugs but tylenol or motrin.  I've heard it hurts.  :(

Hopefully, there will be a silver lining and after bw and scan, they will tell me I don't need to start the other meds until after I can actually get them in my possession.

ttfn  (ta ta for now...) I'll post more hopefully tomorrow about all the procedures.

The Beginning of the End - my IVF story

Yes, it truly has been a year since I've written.  A long tough year.  I always thought I would be prepared to lose my mom, given her healthy history.  But I was thoroughly wrong.  When I lost her, it felt like I lost the strength to go on, like she was the rock behind me, quietly holding me up.  I've had to learn to find my own inner strength.

I'm not sure I did, but I have learned to compartmentalize.  Life has thrown me some nasty curves... enough now that at times it can be too much to bear.  But I don't want to live my life sad and afraid of the next bad thing.  So I tuck those fears into those little boxes and just deal with each day as it comes.

Healthy?  I don't know, but it seems to be working for me, helps me get through each day and I finally seem to be healing some.

I've wondered if I should delete this blog, continue it or what... I'd be lying if I didn't say I didn't desperately want to still get pregnant.  Again, I find it truly amazing that I have not been able to get through this, to just let it go.  I have three amazing children and a mostly wonderful life.... yet it is  always there haunting me, in the morning when I wake, the evening when I try to sleep and several times through the day.

Clearly I have been dealing with depression as I've had the physical pain, sleep issues and complete lost of interest in all my usual favorite hobbies. But the hardest part is the complete lack of hope.  I had none, no faith in people, in God or that life could be good.  I was fearful for my children growing up in a world of such sadness and disappointment.  I have been to church maybe twice in the last year.  Can't go - I no longer believe in the power of prayer. When I do go, I come away completely sad to be so abandoned by God. What did I do?

Then something happened around Oct/Nov of last year.   I started forming some friendships, with true genuine women who have been quietly supporting me, lifting me up.  That has helped so much, being able to talk about my sadness and receiving such compassionate sympathy.  But then an amazing thing happened.  One of those women led me to an IVF program I didn't know about.  And suddenly, there was a new spark of hope in me, something I hadn't felt in a long time. And it felt good.

I knew this was something I had to do.  In my mind, it would bring me peace. It felt like the beginning of the end.   If it worked, then I would be overjoyed and beyond happy.  But if it didn't?In a strange sense, that was OK too.  Then I would know I tried everything.  And that meant that it would be time to move on, but with peace about it this time. Even accepting I would never have that child would be a huge improvement over the limbo I had been living in.  No more  "what if's" or "if only's" hanging in the air....  I am learning to never underestimate the power of closure.

The question remained however, what would my husband say? Well, there were lots of discussions over this, some good, some bad.  I'm not comfortable sharing these very private discussions on a public forum such as this.  In the end, the decision was made, yes, we could do this.  I started taking pills 4 days ago.

Which brings me back to the question of this blog. I have been searching for people's personal experiences with IVF and finding very little.  So I thought I would document mine.  The one single comfort I have found in infertility was the ability to help other women like me.  So  Over the next 30 days, at least, I will share what I am going through, what it's like both emotionally and physical, and of course, the results.

The beginning of the End.  May it bring peace, in whatever form that may take.

Mom Monday - Happy Birthday Mom

This Monday is a little harder to write.  Yesterday, while everyone was celebrating the joy of Easter, Dad and I pasted fake smiles on our faces and tried to keep appearance on a rough day.

Easter just wasn't the same.  The eggs were hidden in the yard for the annual hunt, family was around for a meal together, the kids were dressed in their finest and the sun was shining.  But mom was missing, and so it felt a little empty, like something was missing.

Of course we expected this first Easter, like all the holidays to be hard.  But we had a double whammy.  What are the chances really, that Easter this year, April 8th, would also be my mom's birthday?  I so wish she would have been there to sing happy birthday too.  She died too young.

In her spirit though, I carried on one of her traditions.... the lamb cake.  I grew up in Chicago and that' what we did.  My first Easter out East here with Rob, I remember telling him my mom was bringing the lamb cake for Easter dinner.  He looked at me like I had three heads.   a lamb cake?  What in the heck was that?  His mom always got an Egg cake from the bakery.

 So I explained, a lamb cake is a pound cake in the shape of a lamb. Why I dunno.  It's what we always did.  And we always kid my  brother about getting the butt. He asked how in the world we got our lamb in the shape of a cake, and I explained with a lamb cake mold of course.  I don't think he really believed I wasn't messing with him until he actually saw the thing.

This year, I asked my dad for the  mold.  I didn't know how I was going to make a gluten free lamb cake, but I was damn well going to try.  My memories, the traditions, that's all I have left of her now, and I can't let them go.

It was a lot harder without gluten to hold the thing together.  The first attempt didn't quite make it.  Right into the trash it went!  The second attempt fared better....  I was able to un-mold and frost the thing before it fell apart.  Rob was all set to try a third time when I came up with a solution.  Instead of having the lamb look at you from the side, I moved the head to the front.  It was the best I could do.  But you know what?  It's what my mom would have done, kept trying til it worked out.  I'm sure she was laughing with joy as she watched me muddle through this cake!

So happy Easter everyone, and Mom - I'm having a piece of cake for you!