101

My last post was post number 100. I didn’t even notice.

I went to the RE today for CD7 monitoring, I have 1 follicle still on the left ovary that is 12.1. FSH is lower, *weird* E2 is about where it’s supposed to be.  It’s grown exactly 6mm in less than 5 days with a natural cycle. Which as of this morning is no longer natural. I’m on a new protocol this month, where instead of Clomid, I’ve been prescribed Tamoxifen. Which I am only familiar with as a cancer drug. Because my mother took it for 10 years, before being diagnosed with breast cancer for the second time. That scared me a little, however it seems my RE has discovered that it acts (stimulates) similarly to Clomid but doesn’t thin your Endometrium or cause your LH to surge unnaturally. I monitor again on day 12 (Tuesday) to see whats happening. I imagine, since I’ve done this 10 or 11 times before, that I will trigger, and get a retrieval at some point next week if all goes well with the new meds. In 10, 11, oh who the hell knows, how many retrievals, I’ve never had a dominate follicle come from my left side. Ever. I’ve gotten a follicle or 2 from it before but they always wind up being the immature ones.

My left ovary is all wallflower-ish and under achieving. Like me in High School. Kinda. It’s the one that’s most easily visible and isn’t in a weird place like my right one, but it’s generally kind of lazy. Who else has 1 lazy ovary? How do you get it to be less lazy? Tell it, “You’re grounded until you produce a follicle?” Seriously, is there anything anyone can do to wake the lazy one up? Throw ice water on it? Poke it? What causes one to be lazy? Is there a difference in the egg quality?

Its been a busy week. Remember how I took Chinese III (Mandarin) a few months ago? We this semester I decided since I’m at home alone a lot at night, to take Honors Economics and Honors Political Science and Chinese IV, for fun. Note to self: Stop making decisions while hopped up on fertility meds or in the middle of a depression after a failed FET. Most people would avoid making decisions during times like that. Not me. Bring on some school, and some homework, and some new pencils, and SHUT THE FRONT DOOR this is expensive! Yes. I am an idiot.

My new “plan” is actually going pretty well so far. I’m avoiding the people and the “friends” and the situations that don’t add something positive to my life or my day-to-day. Instead, I’m trying to focus on friendships and classes and activities like Yoga, that make me feel better about myself. I’m also trying to avoid added stress and while the classes “might* have been counter intuitive, I have to admit it does feel good to have my brain engaged in something intellectual. Add a little more exercise and I should have a good recipe for how to better manage the outside stressors in my life.

Since I had to get a scrip filled from the Dr, I stopped at Costco this morning after my appointment. Where I got the scrip filled and decided to bring home some flowers for no other reason than because I felt like it. Usually there has to be an occasion. But not today. Today I just want to be surrounded by pretty, happy, peace and serenity, and there doesn’t have to be a reason. Right?

Regularly Scheduled Programming

Its been a few weeks since my FET failed, where I felt like a huge failure.  That my life was one huge fail, and that it seemed like I would never do anything but fail. Not exactly a confidence booster. Not great for people like me, who don’t sleep on a good day, and don’t bother eating much when its a bad day.

I spun off into more feelings of failure, a very quick weight drop, a brief stint at the Urgent Care for extremely erratic and low heart rate, *34bpm* at its lowest, my baseline is between 70 and 74. Low blood ox, low blood pressure, a visit to my GP, more blood work, my retrieval cycle being cancelled, my first visit ever to a cardiologist, and the temporary installation of a heart monitor. Which I wore for 4 days and promptly took off, because it was itchy, sticky, giving me a rash, annoying and was ruining my clothes. Yes. I am a shitty patient. You could see it through my clothes. I looked like the first stage of becoming a borg. I’m not sure what that means. It’s what my friends husband said. He’s one of those Star Trek people.

I once dated a writer from Star Trek the Next Generation, but I kept pointing and laughing at him so we didn’t last long. Maybe it was because I didn’t really consider that to be a job. Or maybe I didn’t respect him enough. Whatever. I digress and that’s a story for another day.

Its Monday, my Endometrial Biopsy is on Wednesday afternoon, and I feel better. Not so dark and dismal as say 2 weeks ago. Not great really but better. I am functioning, eating, so you can stop yelling at me, and you know who you are. I’m taking my vitamins, trying to be healthier in my choices, which in my case means eating at mealtimes, and choosing fruits, vegetables and either chicken or fish.

Am I scared about the biopsy? No. I feel sort of wary, even though I’ve never had one before, and I don’t know anyone that’s ever had one before, I’ve faced enough “new stuff” each month of my IVF journey that I’ve survived, and I will survive this too.

Here’s my “take away” from the last 2 to 3 weeks. Note to self: Stop saying you’re not going to react badly when something bad happens to you. Because you can’t cure normal. Feeling shitty after the August I had, was not only normal it was a rational response to a series of really bad things happening.

As far as advice for people who try to support the person going through the bad things? Stop saying things like “get over it” and “just move forward”. It’s unfair, it’s unkind and frankly as a society we spend too much time trying to invalidate or medicate our way out of our feelings. Give me some time to breathe, give me some time to grieve. These feelings are hard, and piled up, they are overwhelming.

I’m not saying this to anyone in particular. I’m just saying it. *To be 100% clear, Paul, I’m not saying it to you*

I also had a couple of people who said “So are you going to quit now? I think its time you quit”. To you, I quote Theresa from “A Journey to the Finish Line” I don’t quit when I’m tired. I will quit when I’m done. I will decide when I’m done.

The things that helped me the most were hugs, listening when I was overwhelmed and crying. My husband reaching for my hand in the car. Touch, I think helped the most. There is a saying in Arabic that “you must hold on to the person who is grieving to remind them to stay with this world”

Arabic is general is very poetic and dramatic, so yes its an overstatement, but touch was what helped remind me of my responsibilities to the people who love me, and who I love back. To those of you that reached out and touched me, Thank you.

Now to abruptly switch subjects because I’ve reached my mush quota for the month, and because for all my talk about feelings, I’m still uncomfortable with a lot of mine. I’m happy summer crap tv is over. Because the sheer volume of it I’ve watched is mortifying. I can’t wait for the smart shows I usually watch to come back over the next few weeks.

Now, back to our regularly scheduled programming

August and Everything After

My test results were given Monday morning. I was told stop all meds, in 2 days shark week will begin. It hasn’t. I feel bloated, disgusting and miserable. I’ve been lots of fun to be around. By fun, I mean no fun at all. I don’t smile I don’t laugh, I don’t eat, I don’t care.

This was the week we were supposed to go on vacation. My stepdaughter has been here, my husband has been *sort of* present but work emergencies keep arising. The dog isn’t really getting any better so we can leave him for long periods of time. We tried to go to San Diego for the day today, got halfway there the dog was whining so loud and didn’t want to be in the dog stroller we borrowed from friends.  Mother of Christ I will never ever own a dog stroller. Not that there is anything wrong with them, I just think that they are fundamentally stupid. Disagree? That’s fine. I still will never own one and cant wait to give this one back to its rightful, twee owner. Anyway, we got almost there, it became clear that we’d never be able to do anything much less have lunch or dinner so we just gave up and came home.
Knowing that this was a chemical pregnancy leaves me in a funny kind of limbo. It never was a “real” pregnancy so there is nothing to grieve, right? Except maybe another lost opportunity. But knowing that there is something that started out alive inside of me and died, and is still in there is excruciating. I didn’t find it so hard last time. It was awful last time too, but it wasn’t a blastocyst so I didn’t have such high hopes for it.

The few people I did tell about it keep asking me how I’m feeling. Like I can explain it in words that don’t include expletives and foul language so atrocious even I’d be ashamed to say it. Its easier to just say, “I’m fine” and when they ask follow up questions firmly shut them down with “I really don’t want to talk about it” because I don’t. I just wish I’d bleed this thing out and that it will be over. I want it to be over. I NEED it to be over.

I had to hire a personal injury attorney for the wankster that rear ended me and gave me whiplash and screwed up last months egg retrieval before the transfer.

I guess if I had to sum up my feelings, Id say I’m just angry and sad. But mostly angry. The anger is what is allowing me to continue to function through this, its whats keeping me focused on the next steps forward. Dr. Paul said I just need to put down all the baggage and hurt I carry. I’d like an instruction manual please. If I knew how, I would be more than happy to dump it off anywhere that accepts toxic waste.

Between the problems and cost of the dogs surgery, the car accident and this failed FET, I can safely and with tremendous certainty say, I really want August to be over.

Universe

CD13 Update.

As of yesterday, I have follicles. Unlike my last 2 visits, where my ovaries appeared to be hollow as a Kardashians head. I hate having to mention Kardashians in my posts. Seriously. Ovaries, I mean you. Do your jobs. Both of you!

Or my second ultrasound could have been an error which seems likely since otherwise my follicles are growing at a Herculean rate. If that’s not the case, well then I’ve got a 14mm follicle that wasn’t there 3 days ago, and a 5mm follicle that also wasn’t there 3 days ago.

E2 222, LH 6, P4.24 Continue Estrace add Prometrium, some other progesterone and a partridge in a pear tree. Don’t ask me whats next, I’m not sure. I am sure I like not having to take Clomid. I’m still a little overly emotional but its nice not to feel like a bloated moose for the first time in a long time. I do know that there will be no egg retrieval this month. Which again, I am OK with.
Its been an exhausting week. As in really upsetting, frustrating, and anxiety ridden. I had an X-ray yesterday for my back injury which is conclusively soft tissue except in the neck area which appears consistent with some type of whiplash. I also had both acupuncture and chiropractic yesterday, and an appointment with the RE.

We picked up the dog from the vet last night, after 2.5 hours of instructions on how to care for him and what we can and can’t expect in the next few weeks. Mostly that its going to be a long road back to him walking, playing, running or anything else using his hind legs and that he may never get his full mobility back. Not to mention peeing on his own, and you know… enjoying being a little buddy. But he’s resting comfortably and happy to be home.

I am declaring a moratorium on stress this week. Starting now. I will be avoiding it and everyone and everything that stresses me out. I just need the universe to co-operate with me for 5 minutes please.

Universe. Do Your. Job. Which is not to give me every single exception or to make me feel like a piled upon person with all my bad karma at one time. I do way more good things than bad things, so lets give this old girl a break this week, actually for the next few weeks if you don’t mind. Please. No really. Please? Otherwise I might actually seek out a Thundershirt for myself. Not my dog. I’ve spent a lot of time cursing the Universe this week, maybe that’s why its mad at me. If I stop calling it names maybe it will cut me some slack. Sorry about that Universe, but if I’m honest, you’ve been really hard to get a long with lately.

I need to change my mindset to something a little more low-key, positive peaceful and restful, starting tomorrow. Scratch that. Actually  starting Monday afternoon. Because Monday morning I have an interview with the NFL. Yes. The National Football League. Don’t ask. I have no clue why I am doing this.

I’m going to try to catch up on some sleep this weekend, do a few errands but nothing major, try to enjoy the weekend and my family and face each day as it comes knowing I’ve tried my hardest.

Asshat

CD12 Monitoring Appointment, Cycle 8

I was up at the crack of dawn this morning showering so I could go to acupuncture before this appointment. I showed up early with raspberry preserves for everyone, both at the acupuncture office and for my RE’s office.

Im sitting at the clinic using their computers to write this post. After 4 days off Clomid and on Estrace my numbers are better, I’m not sure they are good enough but there is definite improvement and this cycle may not be lost.

E2 149.8, FSH is 23.2, LH is 13.9. 1 follicle on the right side measuring 9.4.

The E2 is closer to where it should be, my FHS is more than 10 points lower so that’s a big improvement in 4 days, ideally though it’s not quite low enough, in my non professional, unmedically trained opinion. Because my FSH has been so high, my LH is also artificially elevated. So I’m waiting now. To see what happens next.

The plus side of this is for the first time since last Monday, I’m pretty calm. We also get to see my little Peanutgirl today so that’s a very happy thing. I’ve missed her a lot since she’s been in Hong Kong for the last 2 weeks. It feels like forever.

We will do some more work in the yard, Husband is building some kind of a fountain so I cant wait to see how that turns out. Our Neighborhood 4th of July block party is tonight. They have a fireworks show, a kids bike parade, a live band, dancing, face painting, pony rides the whole place comes out for it.

Good things. Things to look forward to and be thankful for.

Sorry I have been an asshat this week. Seriously. I’m sorry. My approach was abrasive.

Just spoke to the Dr. He says continue Estrace Monitor again on July 3rd.

My RE is going to some big IVF convention in Turkey for 3 days, and will be back on July 5th. He expects that if I get a retrieval it will be that day. When he was in China last month, I’m pretty sure my retrieval was also his first day back. I have no idea when this man sleeps. Seriously.

As an aside for everyone who comments on my controversy post, thank you for your input your opinions your thoughts support and even though I was abrasive in my approach, your kindness. I really enjoy being part of this community, even though it’s a club no one really wants to belong to. I’ve met some of the brightest most talented writers, kindest women and most genuine people even virtually than I ever expected.

I hope you all do something fun that’s NOT fertility related this weekend!

Molly

I have a little information about my Egg Retrieval this morning. The egg was still there, they got it, it wasn’t a cyst, and it wasn’t degenerated, but it also wasn’t mature. An immature egg can’t be fertilized so it has to mature before anything else can happen.

It looked sort of like this picture on the surgery room monitor, though I didn’t see it through the microscope and this is a 3d image. The little speckles are red blood cells.

Molly, the embryologist from Joy of an Embryo Sitter was part of the retrieval team today, and while   at first I couldn’t tell who she was, because everyone including me, has on those blue hair covers and masks on, I couldn’t look at her too long because I was afraid I’d cry. Shes been incredibly nice to me and really been a good friend.

I’ve never had an immature egg survive in the lab before (and I’ve had a few) so we will see what happens. Molly said she would try, and she’s a very kind earnest sort of person so I know she will try her best.

This picture is what a mature egg looks like.

Either way I’m looking ahead, so Monday I will start Provera (Oh Yay! and by Yay I mean oh FFS) for 10 days and a few days later shark week will arrive and the Circus will begin again.

In the meantime, I will hopefully keep you entertained with some non fertility related stuff. Get some packages to the post office that are long past due going out, maybe try to catch up on my sleep and start trying to eat more often.

Thank you again to everyone who has hoped for me. I sincerely, genuinely thank you and appreciate it.

Circus School: Luteal Phase Follicle Edition

I am a Geek, a Nerd, a Dork. I want to know statistics, algorithms, percentages. I want to know whats happening to me, to understand the language.

Dr Yelian has commented on it before, saying that most patients don’t want to know, or don’t care, they just do what the Dr says. I say, this is something I am invested in being successful with so, I want to understand the language. That means breaking it down into terms the normal person can understand.

While I am sure many of you would disagree, I am the normal person in this scenario.

What is happening to me this month is an anomaly, because I get every weird scenario/cycle possible. So much for normal. Welcome to my life.

In the Mini-IVF community, the Luteal Phase Follicle is mythical. Everyone has heard of them, knows someone who had one, but no one really understands them, what they mean, why they happen or what their quality or outcomes are.

They occur, but not often and not usually with very good results. (this information is subject to change because Dr Yelian vehemently disagreed with me when I saw him on Monday but didn’t have time to go into specifics) I have asked him about these before, and he was ambivalent about them. Not sure if there was any real value to them, however he just returned from a conference in China and says he has some data that has changed his mind. I will be asking for that data the next time I sit down with him. Because I need to know things.

To review: I am doing Mini IVF, which is IVF with fewer medications, so you don’t get lots of eggs each cycle you may get 1 to 8 depending on your age, secondary fertility issues, autoimmune issues, and whether you have Diminished Ovarian Reserve (DOR), or Primary Ovarian Failure (POF) PCOS, Cysts or Endometriosis.  I have had as many as 5 and as few as 1. It varies from month to month.

I have diminished ovarian reserve, low AMH and I am of advanced maternal age.

Today, I am CD 17, have one follicle that Monday, before it was assaulted with Menopur and Clomid measured 9.8mm. Anything after CD 14 is considered to be “Luteal Phase” or post ovulation.

During an IVF cycle, the dr retrieves an egg right before the woman ovulates, while the mature follicle is still in the ovary. They want the follicle to be as mature as possible but don’t want it to have ruptured from the ovary. In a normal natural cycle (non medicated), this is the only egg that would be retrieved, and so you begin the 2ww wait for the next menstrual cycle and follicular phase to begin. However, sometimes there will be other follicles in the ovaries that may not have been mature enough to rupture at the time of ovulation, but are still viable. With monitoring and sometimes stimulation, the Dr is able to retrieve another mature follicle that has developed even after the patient has entered the Luteal Phase.

The statistics and data on the success rates of Luteal Phase Follicles is murky at best. Generally the egg quality is thought to be poorer by 10 to 20%. I know that there have been LPF pregnancies however again, the data is not easily found. If I could translate the Kato Ladies Clinic white papers and general information about it into English I could make a fortune. The Japanese don’t believe that American women want to know this information. So they see no need to translate these documents. Which harkens back to what Dr Yelian said about some patients not wanting to know.

I don’t understand that. As in, I can not wrap my head around the idea of not wanting to know. I want to know EVERYTHING. Not to second guess the Dr, but to be informed about whats happening to me, why, and if there is anything I can do to change it, stack the odds in my favor or improve my outcomes. Who the hell puts themselves through this without wanting to know?

Anyway. There is one scenario under which my chances might be improved this time. My cycles started getting bizarre in March. Why? I’m not sure, possibly over suppression, however it created a sync issue between my follicular stage and my menstrual cycle which I’ve been combating ever since.

Last cycle from start of my menses, through the aspiration of the cysts, the 10 days of Provera to the beginning of my next cycle was only 16 days. I don’t have confirmation on this yet but it would seem logical to me that while this is another abnormal cycle, the condition where a sync issue exists, would also show that while this may be a luteal phase follicle, it may also be a regular follicle that happens to have begun maturation later since the duration of my previous cycle was so short. By “regular follicle” I mean one of good quality.

This logic could also be a mechanism to encourage myself to move forward with it, and keep my head from exploding.

Maybe no one else really wants to know this information. Maybe I really am an anomaly. I find writing it down in words that make sense to me, helps me process through it. If its boring, I’m sorry. Maybe these school posts are really just for me.

Acupuncture today, Clomid with a big shot of Menopur tonight, and doing everything I can to keep my stress level down. Which means vegging out and trying not to think too much. There should be an off button. Seriously.

Cycle Cancelled

I’m to meet with the Dr. on Monday, I’m not sure if it’s for monitoring or to discuss this cycle but there will be no retrieval this month. I don’t know what happened and no one can give me a good answer until the Dr gets back from China.

Validation

Monitoring CD12.

Ive been up since 6am. Feeling the best I have since Wednesday. I was pinned by my acupuncture Dr., who also listened to me cry and when I told him “I wish someone would just come out and say that my family is crazy” His answer, completely straight-faced was “You realize its a given, don’t you?” Which made me laugh through my tears.

He can’t relate but I think he can empathize. He has a normal loving family but he sees what my intentions are, knows I’m not any of the things my sisters and mom accuse me of being. And for once, it was really nice to be validated. Thank you Dr P. You really are a great friend to me.

All of this drama with my family, which I don’t handle very well..has just made me more determined to find a way to complete my own family. Whatever that looks like. If I am ever lucky enough to parent a child that’s mine, I want them to grow up kind, and sweet. I don’t want him or her to grow up like me, tough, always fighting, always afraid to be vulnerable.

This morning at 11am I will find out if the meds worked, and if 2 the follicles grew. I hope they both did. I hope they sucked up the Clomid, and got fat and healthy and that I will get scheduled for a retrieval for Monday. That’s a first, actually WANTING to get an egg retrieval. Not that I didn’t want the others, I kind of dreaded them and they scare me so looking forward to one is… new.

I’m not going to complain about feeling like my ovaries are heavy or full, or that I feel bloated. Because I would take that over a conversation with my sister any day of the week and twice on Sunday. I can handle my mothers diagnosis, I can handle making peace with her, and possibly her even coming to live with me, I can handle nursing her, I’ve done it before. What I can’t handle is getting ambushed by someone whose sole intention was to be hurtful and nasty.

Enough about that, it’s a new monitoring day, it’s a chance, it’s the start of a long weekend, and while we don’t have big plans, we have good things to look forward to. If it doesn’t turn out well today, I will try again next time.

Maybe Not Maybe

CD 8 monitoring update

I want to think of everything as a new cycle a new beginning. I don’t want to become cynical or bitter or someone who doesn’t hope. But to review, after last months cyst freak show, I was put on Provera. Which means from the start of that cycle to the start of this one was 16 days.

On day 3 I had 2 follicles right side was 8.2 and left side was 5.8. Today I had 2 follicles right side was 6.3 and left side was 6.6. My RE says that its very possible that the 8.2 follicle disappeared, and that a new follicle grew that is now 6.3. Or it shrunk. He doesn’t know. Of course neither do I.

So, the rest of the numbers are: E2 90.3, FSH24, LH9.1.

Dr Yelian asked that I monitor again on Friday, and that if there is a retrieval it will probably be Monday depending on Fridays results.

After consulting previous cycles my “normal” retrieval day is around day 11 or 12, and the one time I had it later the results were extremely poor, but I am told that a longer cycle is better and that this may still turn out to be a good cycle.

To explain how all this works, if the Clomid works and the follicle grows, FSH goes down inversely to the E2 which goes higher. A good cycle will be an FSH under 10, and an E2 over 120 or so. An FSH over 30 can inhibit the growth of the follicles so at that point es-trace or some other kind of estrogen medication can and often will be administered.

I did a LiveChat with my RE on Friday night. Only a few people showed up (much to my disappointment) but the questions were serious and educated. I’m not sure how he feels about it, but I recorded it in case anyone is interested in listening. I will post the link if I get some requests for it. The women that attended really liked it. Because this is my field of work, this lead to a discussion of how he could improve his site, what videos he needs to do, what kind of forums he needs and what are the best practices to keep him one step ahead of everyone else.

He and I had one of those heart to heart talks today, where I explained to him why I want to be a mother so much (for the first time), and why I cried so much at the beginning, and he told me he knew we had “glitches” but that he really thinks I’m a good person and will do everything in his power to help me get pregnant. Clearly we now have a better understanding of one another.

Can someone just wring me out so I stop with the bizarre weeping? Please?

While I’m a little worried about not having a retrieval this week, he gave me comfort in knowing that if I do have a retrieval it will probably be Monday when he’s back from China. Which is some comfort for me. He’s going to China to be a Keynote speaker at some event, traveling for literally a day and a half, to do a speech and then travel back in a total of 3 days. How committed is that?

Monday will be Memorial Day, when Banks, normal Drs offices, and other govt related businesses will be closed. Dedicated? I have to say, I like what he stands for, and I like his commitment and passion. I have to admit when he said he considered me a friend, I started to cry.

I’m blaming the Clomid. Not my sentimentality or the acknowledgement or the care. I’m blaming the drugs.

Because normally no one ever sees me cry.