Tuesday, September 25, 2012

The State of the Cycle

Here's how things are looking so far.

Lingo to be made red and bold when with definition for easier finding.  We'll start with this one:  CD = Cycle Day.  CD1 = 1st day of period.  We  count from there.

My appointments so far this cycle:
CD 2 (Friday, 9/21) - I had my baseline appointment.  The point of this was to make sure I don't have any cysts (which happen often during this phase of a cycle).  The birth control pills and Lupron were/are being taken, in part, to help prevent cysts, because you can't go forward with an IVF cycle with Cysts.  At this appointment, I had the nurse that I met a few times during my IUIs and I really like her.  She's nice and friendly and gives me lots of information.  We saw a lot of resting follicles on my ultrasound, which is great!  And no cysts!  She made me get a little excited with her cry of,  "lots of potential in those ovaries!"  We also talked about how much more information you get during an IVF cycle vs an IUI cycle and how the rates of success are much higher.  Queue hopefullness.  I found myself dancing around the kitchen that night while cooking.  Got a phone call later in the day that my Estradiol (E2) levels look normal, which also means no cysts so I was good to go with starting my stims (the medicines that stimulate my follicles to grow - in my case during this cycle it is Follistim and Menopur) and I started my Folistim and Menopur that night, and reduced my dose of Lupron by half.

CD 5 (Monday, 9/24) - This was just a blood draw appointment and I gave 1/2 a vial for the IVF.  In addition, I finally did my final appointment for the AMIGAS study that we had our IUIs through.  So I gave an additional 5 vials of blood for that and met with the study coordinator to answer the final study questions.  They took all the same vitals they took throughout my treatment and closed my case.  It was really nice that they were able to wait until I was doing IVF and have me come in when I already had to be there.  I didn't have it in me to go do this before...just so much harder to drag myself into the city for an appointment with a blood draw when it's to close out something unsuccessful.  Was much easier to take in the context of moving forward in other treatment.

I really realize how much more the study prepared me for IVF in some ways than a traditional IUI patient.  The extra blood draws/ultrasounds and appointments make this seem a bit more like old hat.  And I give WAY less blood for IVF than I did for the study.  Of course, the injections and meds are so much vastly more than IUI, and that there was no real way to be prepared for.

Anyhow, I  Got a phone call several hours later that my E2 levels were 340 and that this means I can reduce my dose of Menopur by half.  I was taking a nap when the nurse called so I didn't get to talk to her directly, but I am learning as I go and it sounds like all this monitoring is for this exactly - so that my meds can be precise and changed as needed to make sure my follicles are growing, but not growing too much.  Anyhow, I am psyched about this because the Menopur stings like crazy hell, and it stung less last night because it was less concentrated (same amount of liquid, half the meds).   Also, as far as I'm concerned (and them too), the less stims I have to take for a good outcome, the better.

CD 7 (Wednesday, 9/26) - On Wednesday I have an appointment at 7:30am (yes, this means leaving my house at about 6:15am) for another blood draw and an ultrasound.  I'm excited to see what all my little follicles are doing!  Grow, follies, grow!  (but not too much, please)

How I'm feeling:
So, the Lupron is still making sleep hard.  In addition, the Follistim (I think, based on my Internet medical degree) is making me exceptionally sleepy.  So, up until about two days ago I was in a sleepless fog as happens when you aren't getting full nights of good sleep.  Suddenly two nights ago I began being able to mostly sleep through the night, maybe a little more restless than normal, but far better than it had been.  But, at the same time I have started to feel nearly unbearably tired in the day - kind of like the way one feels after taking a nice dose of NyQuil.  I think that's from the Follistim.

I have had some pretty severe headaches, although none in the last couple of days (knock on wood).  I think the reduction in my Lupron dose is helping that and the sleeping.  My muscles were so tight in the back of my neck and head that I couldn't drop my chin to my chest (I am usually quite flexible) and I could just feel this direct line from the top of my spine straight over my head and into my headache.  Not pleasant.

My lower back started hurting at this same time, right about where ovaries would be.  This is familiar because it's how I felt toward the end of my IUI cycles when I had 2 or 3 big ol' Follicles going.  I'm a little scared, cause it's still pretty early in the IVF cycle, so it will likely get worse.  And that makes sense, cause IUI = 2-3 follies and IVF = 10-20 follies.  Anyhow, the extreme fatigue may be directly a side effect of the stims, it may be just because the lack of sleep is finally really catching up with me, and it may be because my body is working really really hard right now.  I was definitely really tired during IUI cycles as well.  My guess is a good combination of those 3 things.  Yesterday I couldn't really stay awake during the day.  Slept whenever I could.  Also, I went out to dinner in my pajamas.

What else?  My stomach is sore and tender.  Like you might imagine a stomach would feel after having 3 needles stuck in it a night.  I went and bought two pairs of super soft pajama bottoms at Old Navy yesterday because when I'm home I can't wait to get the pressure off my belly and put those on.  (Hence the wearing them to dinner).

The cat is a brat and likes to walk on my stomach somehow now more than ever.  But she's also totally adorable and fell asleep with me on the couch yesterday - curled up on my chest.

Emotionally I'm feeling OK.  I'm moody, for sure.  More prone to tears and more prone to giggles than I have been in awhile.  I also feel like I'm always seeking sympathy.  Last night I asked Ian, "What if YOU were the one who had to do all the injections and I wasn't?" and he said, "I would probably also plow forward and do them and I would probably also complain about it a lot."   He told me that I am brave, and I like that.  Although I don't feel like I have any other options, really, so it doesn't feel quite like bravery.  But anyhow, I do see the hormones affecting my mood stability, but so far it hasn't been overwhelming and I've been able to maintain sanity and perspective.

I feel like there are two big unknowns right now and I can't really do anything but wait for them to both happen and see how it goes, but for a planner like me, it's hard!  I wish I could put everything in my calender!
1. We don't know when my retrieval or transfer will be.  We don't even know for sure that there will be a retrieval and transfer.  But I get more information every couple of days and all I can do is wait.  Hard to plan anything, work or lifewise, without knowing.
2.  We don't know when my friends' baby will be born.  Which, I can assure you (and myself), is harder for them than for me!  But mostly, I so bad want to be able to be there, but it could end up being retrieval or transfer day.  It will be complicated with my meds and my appointments (and more work being missed).  It would be so awesome if I could plan it out and prepare to make sure it was going to work, but hey - turns out life doesn't really like to be planned all the time.  So, I have just been working on coming to peace with knowing that I will be there when and for however long I possibly can be and hoping it will be just perfect timing and that they will still love me no matter what!

Some Photographic Storytelling:

These are my three different needles all ready to be injected the first night that I had to do three different ones.  So, the littlest one with the orange top is the Lupron that I've been doing for weeks now.  It hurts a little bit, but is tiny and SO fast especially now that the dose is so low and so there is so little liquid going in.  The spreading rash I used to get from it is tiny and far less stingy than it was before. The middle one - the bigger syringe - is the Menopur.  It is 1 cc of liquid that was mixed with 2 vials of powder, but now is mixed with just 1.  The needle is thicker and bigger and it's so much more liquid to go in, so it takes much longer.  This is the one I hate because it stings so much and it feels like it takes forever.  From the second I start pushing the plunger until it's done it is ouchie mcouchpants all the way.   The bottom thing is my Follistim pen.  It has a tiny needle at the end and the meds in a cartridge inside.  I dial the dose with that knob thing and it does most of the work for me.  This one I usually don't even feel it going in.  It's the best!  Well, not the best ever, but the best ever of needles one might have to stick in their tender belly flesh.  I almost didn't believe any liquid was going in at first and I described it as sticking a needle into a stick of room temperature butter, it is just such a smooth entrance.

We had a wedding to attend on Saturday and I wasn't sure what I was going to do, since it was my second night of doing all 3 injections at 10pm.  I decided that I would bring everything with me so that if I didn't feel like rushing out of the door at 9:30 to be home on time, I wouldn't have to.  When 9:30 came around we were still waiting for another friend to do an awesome arial performance and the dancing and photo booth hadn't even started.  I was freaking out about where I could do this, because there was only a single ladies toilet and I didn't want to hole up in there for too long, and since I was wearing a dress I'd have to entirely lift to show my belly, hiding in a corner wasn't a good enough option.  But, I found someone who worked for the caterer, who found someone who worked for the venue, who gave me access to a back office that had a couch and a door with a lock.  Anyhow, I found a place, watched the performance, and went to shoot up.  Our friend, who is a doctor, was keen to "help" but was not entirely sober.  Nor was I.  Ian guarded the door.  And I used this pile of wedding chairs as a staging area.  Unfortunately stuff kept falling into the chair pile, and the friend kept having to dig it all out.  Also, I somehow managed to poke myself in the finger with one of the needles and start bleeding.  Am hoping I don't end up with finger babies due to tiny drops of meds getting in there.  All in all we were probably hiding in that room for upwards of 20 minutes, but we got it done and it was kind of funny.  We only stuck around another 30 minutes or so after before I was exhausted and needed to go home, but I'm glad that I had given myself the option to stay a little longer and leave when I wanted to.  

This is Tom, the AMIGOS study coordinator, showing me my giant binder.  It's hard to tell in the photo, but it's like 4 inches thick and is all my paperwork from my 4 IUI cycles with the study.  Tom didn't know he was in the photo.  But he was.  

Here's my belly last night about 30 minutes after my injections.  The picture doesn't really do it justice, cause nothing shows up as brightly as it does in real life, but you can sort of see some of the bruising, redness, bumps and pokes from 4 days worth of injections.  

Locations I have been in while injecting myself:
My parents' flat
An airplane
My house
The bowling alley
RF-80 (wedding)


1 comment:

  1. A. get used to the totally exhausted feeling as it will last through most of pregnancy and your child's first year (and probably beyond, but I only have experience with the first year so far) ;)

    B. you are brave. even though you feel as if you have no choice, you do, and are making the brave choice. Bravery never feels like bravery to the brave person, it only feels like you are doing what you have to do. This is what I have learned from all the people telling me how brave I am dealing with Lex's CF. It doesn't feel like bravery at all. It feels scary, overwhelming, emotional, etc. but we do what we have to and that IS bravery. Doing it anyway even though it is hard in so many ways.

    C. I am sending you all my positive vibes and thinking about you all the time! Love you!!