Monday, 28 April 2014

The Cheap Date Application

As frightened as I am that IVF#2 will also be a waste of time and resources, I'm pleased that we can start right away. While we were navigating the potential scheduling conflicts, I feared that we would need to wait for a cycle and then proceed during the luteal phase of the subsequent cycle, which could push my stimming and retrieval into the middle of summer. I was supposed to allow my uterus to have one 'normal' cycle after my D+C and then we would coordinate my first FET with the next cycle, but as it took over seven weeks for AF to arrive, my RE felt that enough time had passed and graciously let me start my prep with that cycle. Especially as my 38th birthday is lurking, I'm really keen to start sooner rather than later.

I took an inventory of my leftover meds and called New Girl the next day to review my protocol for this cycle. I pretty much already knew what he was going to use, so I would have been happy if she just gave me a verbal confirmation. She could have also mailed a copy of the list, since I have enough time to gather my supplies. Rather she offered, "I can just take a picture and text it to you." Seriously? "Although you know this is not a HIPPA secured transaction...Wait, I'll fold the corner, now we can't see your name." She is so bad-ass! I love it! I really can't believe that both she and my RE have granted me access to their personal phones, as they must really trust that I won't abuse it (again). I was already so thankful for her helpfulness, but she took it one step further and tried to figure out how much I'll need of each drug. As she looked through the doses from my last cycle, she commented "Wow, you got that many eggs with barely any meds!"

I replied that it really didn't seem like it was that many. In fact, it felt as if my yield was just a touch more than a DOR patient. "Jane, someone with DOR would need three to four times the amount of stimulation to achieve the same number you did." I already knew that, but it was still reassuring to hear her say it. In return, I expressed that it seems like my protocol is sacrificial, why not turn up the heat and see what these girls can do?  "Jane, sometimes less is more." she replied. My RE has commented that higher retrieval rates do not necessarily translate into higher pregnancy rates, but it seems so counterintuitive. If every egg represents the possibility for pregnancy, why would you not maximise that potential?  I did recall an example from my retrieval. While we were waiting to go back to the surgical suite, we could hear the nurse checking in on the patient next to me. "I got thirty-two eggs this time. I had thirty last time." she announced to the nurse. As I was starting to feel inadequate about my mere dozen, Husband (seemingly unaware that if we could hear her through the thin diving curtain, then she could hear him) asked out loud "What are you doing back here if you had thirty eggs last time?" Ah, tact is not his forte. New Girl laughed, "Let's just hope she was a donor..."  

Anyway, that night I started to calculate the costs based on New Girl's projections of what we would need. Just like when we were ordering any building supplies, I added an extra 10% to cover the unexpected. I was able to secure someone's unused Menopur for a steal of a deal. I still had a 14 day Lupron course from my last cycle, as my RE was considering employing Lupron for my trigger. As my instructions for this cycle are to start the Lupron in the middle of my luteal phase and to continue until my trigger, I figured I'd need at least 21-28 days worth. Then I looked closely at the dose. I had a 2.8 ml vial of 14 mg of Lupron, which works out to be 1 mg per 0.2 ml, but my daily dose is only 0.1 ml. I later had both New Girl and Misery check my maths, but apparently I have enough Lupron on hand. I only need to obtain the Gonal-F and Novarel, which I am hoping I can order from my fellow infertile pharmacist friend. Last time we charged over $3,000 to Freedom Pharmacy, which didn't include all my progesterone supplements, which were probably an extra $250. I think I have enough P4 to get me through to my beta test, so we'll only have to purchase more if I actually become pregnant. It's looking like we may have cut the cost of our meds in half, although I did spend $50 on GNC supplements, as I'm going for broke to try to improve my egg quality. Husband's eyes started to light up..."Your ovaries are a cheap date!"

Suddenly, the 'less is more' principle made sense to me. I recalled how a girl with low alcohol tolerance would often refer to herself as a cheap date. My ovaries are the debutante who becomes incessantly giggly after her first few sips of champagne. Or to use a more modern example, they're the sorority girl who becomes totally wasted after a few swigs of Natural Light. The gentleman suitor must know when to curtail her consumption, otherwise he'll be holding her hair back later that evening...and not in the way that he intended. At the same time, my ovaries need to learn the value of being virtuous. They can't let the intoxicating elixir of nun urine and recombinant gonadotrophins go to their head so quickly that they give up a dominant follicle too early. They must save all their presents and wait to open them on Christmas morning.

Husband and I enjoyed a good laugh, as we acknowledged that this is the first bit of encouraging news since learning we'll have to double our investment for an even more improbable return. I even went as far as to suggest that my ovaries may be offering us a favour. "Well, not really." Husband countered "They're the reason why we're going though this again." Yes, but if your boys would get up at 5:30 and go to swim practice with me, maybe we wouldn't be here... I thought to myself, but didn't say out loud.

Thursday, 24 April 2014

Fail Better

During the early morning hours in the last week of January, I found myself staying awake to watch the Australian Open. In particular, I was drawn to Stanislas Wawrinka's amazing title run.  He accomplished an incredible feat by defeating two former champions en route to his first major title and managed to overtake Roger Federer as the number one Swiss player. He also possesses the most gorgeous one-handed backhand in the game today. Personally, I prefer the power and precision granted by the second hand, but his one-handed shot is absolutely beautiful. Oh additionally, he has that rugged handsomeness that tempts a roll around in the hay. Anyway... during his matches, the commentators made much attention over a tattooed inscription on his forearm.

Ever tried, ever fail. No matter
Try again, fail again, fail better

This time I made sure to check Husband's schedule before scheduling my second WTF appointment. "What for?" he asked "The two of you talk in your own language and I feel like the third wheel." My silence agreed with his point. It also seemed to echo that we haven't gotten very far with my brain power. Perhaps an outsider's perspective would bring more to the discussion. Thus, my strategy for this meeting was to let my RE do all the talking and have Husband ask questions. Well... most of them anyway...

Dr STIUTK once again expressed his condolences before launching into to his assessment. There's obviously an embryo quality issue. It is difficult to determine if it is specifically the eggs or sperm; but for all practical purposes, it's probably both. I wanted all cards on the table. "So, is it worthwhile to pursue another cycle with our own gametes?" Apparently he thinks it is. While I acknowledge that I was hoping to work with more, we were able to transfer four embryos generated from the six eggs that had fertilised (out of eight available mature oocytes).  In the IVF world, this is actually good; even though it didn't work. My RE also discouraged me from using the word 'failure' and replaced it with 'hasn't worked yet'. Ah, there was the spin that I was expecting. He recognised my perspective, but noted that I don't have the same vantage point to witness hundreds of failed cycles. True, most of the time I'm receiving their successful cases, and I only ask about the details that led to their current pregnancy, although some offer a recount of their struggles.  I also have 'G0 (failed fertility treatments)' written in the notes of many other patients, and I don't usually ask any follow up questions.

My RE reviewed his modifications to my protocol for Husband's benefit, as we started to look at the calendar. If I were Mary Perfect with a 28 day cycle, based on when I would be starting the mid-luteal lupron and when I would start the stims, my retrieval could coincide with Memorial Day weekend and another hockey tournament. He gave us the option of either extending my lupron for a day or two, or freezing sperm. I feel unwilling to compromise anything with this cycle, but as I tend  have a longer follicular phase, especially after being suppressed for a while, my slow to respond hypopituitary axis may work in our favour. Oh, ClearBlue Fertility Monitor, I just can't quit you! You accurately detect my LH surge and predict ovulation even when it's day 22 and even though my RE expressed skepticism about your abilities. Welcome back into my morning routine.  Actually, it will make for quite a change to not engage in awkward timed intercourse on the night of my high reading.

As my RE started to wrap up our visit by expressing that while he can't offer any guarantees, he still feels hopeful about our prospects, I stared out the window and thought about the questions I didn't ask, as I don't think they can be answered.  What happens if the next cycle unfolds like the last ? If my estrogen levels are too high on SD4, does that mean that my eggs will be spoilt? What if we still have unsynchronous follicle development? Could the lupron and lower dosed stims be too suppressive leading to a relatively low retrieval rate? If our embryos look poor, will we need to consider another day 3 transfer?

I did ask if anything can be extrapolated from the fact that one of my day 3 chromosomaly abnormal embies implanted, but both my FETs failed. My RE didn't have an explanation, as theoretically FETs should be more likely to succeed as it allows for a more optimal uterine environment. At this point in time, we will plan for PGD testing with an FET to follow if there are any normal embryos. Now that I have more failed transfers, I'll have one of my colleagues perform an endometrial biopsy to induce endometrial injury prior to the procedure.

Ultimately, I know that no one can offer any assurance that our second cycle will exhibit any improvement, nor will it be successful in producing a take home baby. Thus, the words from Samuel Beckett seem to resonate with me. Are we merely attempting to fail better?

Sunday, 20 April 2014

Nothing to show for it

I don't keep any formal record or list, but I carry a mental tally of my patients who have miscarried but returned with a successful pregnancy. I'm also aware that there are a least an handful who haven't found their way back. While I was stimming, I had a horrible day where three of my new OB patients were non-viable and I picked up another one the next day. For two women, it was their first pregnancy and it was the second one for the other two. Three were under the age of 30 and all of them were pregnant again by the time I did my first FET. The fourth woman just recently turned 39 and she was the one for whom I had the most concern. She had emailed me in January, with an 'I want to make sure we're doing everything correctly' inquiry, as she had become pregnant rather quickly with her prior attempts. I discussed the challenges with her age and offered some ovarian reserve testing for her, but she passed at that time.
As I was in the prep for my second FET, the fourth patient emailed me to announce her positive test. After wading in the cautiously optimistic waters until her second scan at 8 weeks, things seem to be moving well for her. During this time I also saw a 43 year old patient who had her first baby months after her 40th birthday. She waited a year before trying for her second, and sadly she proceeded to have four miscarriages in the past two years. She declined any testing or intervention, but proclaimed that she was waiting for one good egg if it were to come her way. At last it did. She's now in her second trimester and her MaterniT21 testing was negative. If this pregnancy goes the distance, she will be my second patient to have two babies over the age of 40 without assisted reproduction. Another patient who had a D+C at the same time as me and was also found to have a trisomy, messaged that she is pregnant again. Just to add to this Rainbow Baby Boom, a patient who used to see my RE, but switched to another clinic as she didn't like his bedside manner, is on my schedule after her presumably first IVF cycle was successful.  Oh, apparently it's contagious in my office as one of our receptionists is pregnant. I heard her mention that she's due in early December, which means she must have been still smoking the post coital cigarette when she announced her pregnancy.

I am finding it interesting that I can care for patients with unplanned and undesired pregnancies and not feel any envy. I merely remind myself that they are fertile. I am not. I can't relate to their experience at all, and I know I probably never will. Yet, I feel more of a kindred spirit to my patients who have a miscarriage or two under their belt. I know what it feels like to want something so badly and to have it pulled away from you the moment it's in your grasp. I'm ashamed a bit to admit that while I'm so delighted to confirm a viable pregnancy for these patients and share the news that their Rainbow Baby is on the way, I'm stabbed with a few pangs of jealousy. Will it ever be my turn?

A year or so ago, I attended a lecture on recurrent pregnancy loss and the speaker made a point that these women are not infertile. In my notes, I jotted the word infertile and drew a 'No' symbol around it. My patients were not infertile, they were just unlucky at that time. In particular, the former mutual patient is not infertile; her husband had a vasectomy reversal. Isn't it nice the way men can have a second go around raising kids with the younger wife #2? So where does that leave you if you are infertile and unlucky with your pregnancies? Well, screwed is the obvious answer, but I have to remind myself that I'm actually fortunate to have an explanation for our infertility and losses.

Heading into to beta day, I felt that I really couldn't read this one. It seemed rationale to prepare for disappointment and hope to be pleasantly surprised. I imagined Misery's message with both scenarios. Just before my afternoon session began, I grabbed a progesterone suppository from my purse and headed for the bathroom. As I was positioning to insert, I accidentally dropped the tablet on the floor. Shit. It's a fairly long walk back to my desk. Then the little voice inside my head spoke up. It doesn't matter. You're going to be stopping the progesterone anyway... 

There were two patients already waiting when I was back at my desk. If my results were positive I would just take a double dose in the evening. One of my new OB patients that afternoon was actually a client of my RE's partner. She hadn't selected an OB at the time of her discharge, so we didn't have any of her records. I was going to have to fish for details. She was only 30 and had tubal factors. She ended up doing a freeze-all, as it sounds like she had a bad reaction to the anesthesia used for her retrieval and was sick during the prospective time for a fresh transfer. I guess when you have lots of eggs, you're under for a longer time. "How many did you transfer?" I asked. "Two embryos, but only one took." If she only had one stick, then we're fucked... My last patient of the afternoon is one very well known to me. She had a blighted ovum with her first two pregnancies before delivering her Rainbow Baby last year. Her ultrasound found a single, viable pregnancy at 6 weeks and 5 days. "It must be nice to give me good news for a change!" she exclaimed. "It sure is!" I replied with a genuine smile. I'm due for some good news myself...

I waited until the end of the day to listen to the voice mail with my beta results. It just seems odd to pause and take a phone call that will deliver such game changing news, and then carry on working. This time it was also awkward as Husband was on the east coast for a field hockey tournament and was three hours ahead of me. Her message was 32 seconds long, almost the same length of time as my positive result. Maybe there was a glimmer of hope...

"Hi Jane, It's Misery from Dr. Somebody that I Use to Know's office."
"I hope your day is going well." Fuck, she's stalling
"We received the results of your HCG test.." No shit, isn't this why you're calling?
"I'm really sorry Jane, it was negative... less than 1." the final embie couldn't even muster a chemical pregnancy... 
"Dr. STIUTK wants you to stop your meds (already a step ahead of you) and he says to call of cycle day one and/or when you feel up to moving forward. He would like to meet with you to discuss your next steps."
"Again, I'm very sorry about the outcome. We'll talk to you soon."

As soon as I walked through my front door, I went through the routine that has become all too familiar. I tore off my estrogen patches and packed up my progesterone until next time. I ripped up my medication schedule. I refused to take my regular multivitamin, as I know it's underlying intention. This time I cried. A lot. The tears flowed easily for the rest of the weekend and could come out of the blue. I didn't need much to set off the waterworks. Musician at the Farmer's Market performing John Lennon's 'Imagine'  -cue sniffling. Acknowledging how much we already love this baby who may never exist -and the sobbing starts. Lamenting frustration of the failure of IVF#1 and feeling uncertain about the prospects with IVF#2 -now I'm bawling.

IVF was supposed to work. The whiney petulant child inside my head is throwing a tantrum. Much like little Myrtle as Myrtle offered to send me videos of such an event to serve as birth control. I keep thinking back to our initial consult where my RE projected that our chances with IVF were "good". Although 'good' was defined as a 40% success rate, and at that time the wise-ass in me questioned how a prospect with a 60% likelihood for failure could be viewed favourably. Realistically, the odds leaned toward failure. This actually wasn't supposed to work.

Now we're facing the situation that was my ultimate fear when we were deciding whether or not to take the IVF plunge; our first cycle is complete and we have nothing to show for it except the bills. Six months have passed since I started stimming. IVF was supposed to increase efficiency. One cycle produced four usable embryos, but none could go the distance. While recommending my desperation day 3 transfer, my RE described that the worst case scenario would be having no surviving embryos. Now I feel that I would have preferred that alternative. We would have saved a lot of time and resources. I've also developed a new appreciation for my day 3 embies. Damn, they got the job done -lethal anomaly and all. I renounce my position as a day 5 blastocyst snob.

I replayed Misery's voice mail a few times. Funny, I only listened to her message with my positive result only once. Now I can't bring myself to delete it as I want to have a record that someone once said, "you are pregnant" to me. I focused on her words and [pause] or when you feel up to moving forward and tried to detect any hidden infliction. I'm sure it's a standard message that they often use with patients with multiple failures, and I even acknowledge that I encouraged my own patients to decide when they are ready to try again. Still there was a part of me that was hearing her say 'so if you're dumb enough to continue this futile pursuit, let us know when you're ready to have your heart crushed again...'

Well apparently I am. It's onto anther WTF appointment with my RE. I'm curious to see how he'll try to put lipstick on this pig of a cycle and find any optimism within the opportunity of a second attempt. It's just such a fucking gamble. Maybe you'll win, maybe you'll lose. I'm starting to feel like Charlie Brown, who believes that one day, Lucy will be true to her word and will let him kick the football.

"You may say I'm a dreamer...
but I'm not the only one."

Wednesday, 16 April 2014

Behind the Music

A few years ago, I competed in my first triathlon (okay, it was a sprint distance, but it still counts...) The running leg took us along a windy trail, and there were several volunteers helping the racers navigate the course. One was a young man who was barely twenty years old and was ringing a cowbell. I couldn't resist the temptation. "More Cowbell!" I yelled to him and much to my satisfaction, other runners joined in my juvenile antics. "I gotta have more cowbell!" The poor kid, who I suspect was a bit hungover, looked so confused and probably had no idea why everyone wanted him to keep ringing the damn cowbell.  

The legendary "More Cowbell" sketch (if you haven't ever seen it, you must click here to watch) aired on Saturday Night Live on 8 April 2000. The concept was borne from the brilliant mind of Will Ferrell, who was listening to the song 'Don't Fear the Reaper' by Blue Oyster Cult. He picked up on the innocuous cowbell interlude, and took note that the last time he checked, we don't have many songs that feature the cowbell. Ferrell realised that for this cowbell player, that small solo was really a big deal. So much so, that it could be a disservice if he didn't play the hell out of the cowbell. Ferrell conjured a factious member of Blue Oyster Cult and wrote a sketch that would capture his moment in the spotlight.

The clip went viral, as they say, and over fourteen years later, the cultural impact is still prominent. Many of the participants noted that they seem to have gained more recognition for the cowbell sketch than other work they've done, and various entertainment sources have ranked it among one of the best SNL skits of all time. Yet there is an interesting 'behind the music' story to this sketch. When Will Ferrell first presented the idea to his fellow writers, there wasn't much enthusiasm or support behind his creation. The notion was tabled for a while, until Christopher Walken was booked as the guest host. Some thought that Walken would fit the role as a famed producer named Bruce Dickinson (yes, the Bruce Dickinson) and could pull off the sketch. They were right; Walken absolutely nails it (I couldn't find the reference, but I think I read that he ad-libbed the line 'I've got a fever... and the only prescription... is more cowbell'), but ultimately it is Will Ferrell who steals the scene. Perhaps realising that his tribute to an underdog, was truly his big moment. Yet, even in their rehearsal, Jimmy Fallon though the bit didn't seem that funny.  Then Will Ferrell changed into a smaller and tighter shirt, and such a slight difference had such a significant impact that Fallon could barely contain his laughter during the live performance.

Back in the mid 70s, in a real life recording studio in London, Gordon Sumner, Andrew Summers and Stewart Copeland were laying down some tracks while Stewart's older brother Miles Copeland III was listening. Miles was doubtful about the band's potential and was very reluctant to provide funding for their first record. After drawing inspiration from watching a brothel in the red light district of Paris, Gordon composed a song about a man who falls in love with a prostitute. For various reasons, the group had mixed feelings about the song and were considering dropping it. Yet, on this particular evening, the artist now known as Sting, decided they would perform 'Roxanne'. "You've written a classic!" declared Miles Copeland and that night he signed a record deal with A&M Records for the group who would call themselves The Police.

Meanwhile, in the transfer suite at XYZ Fertility Centre, we learned that our final embryo was listed as a grade 2 and required assisted hatching. Husband lost all hope when he heard that news. "Not so fast.." I advised him. After our first two embryos appeared to have the most potential, even though one had a fatal flaw. The Chosen One couldn't deliver. "I'm so over embryo grading." If we go though another fresh cycle and have more than two embryos with normal PGD results, I'm going to ask the embryologist to make her selection using eenie-meenie-miney-moe. It all seems equally arbitrary. I know of four bloggers who scored with their clean out the freezer FETs. Is there any validity to the grading or are they just saving the best for last?

I think Husband would have preferred to start fresh with a new stimming cycle than pin our hopes on transferring this remaining embryo. He didn't see it as an either or decision, since the final embie would always be available for us (providing it survived the thaw). He was pissed that I didn't consult his availability when I scheduled my WTF appointment. I know I should have, but in my defense, I was working within a narrow window of time and I knew I needed to get in before my CD3 so we wouldn't have to wait another month. When I mentioned that Dr Somebody that I Used to Know was advising a transfer of the final embie, Husband responded "Well, of course. He wants to drain every penny he can from us!" Interesting. When my RE initially thought the final blast was of poor quality and suggested a fresh cycle in lieu of a transfer, Husband responded "Well, of course. It's more money for him." The guy can't win. I just can't believe that the guy who refused to pay our 2012 tax return with a credit card as it would cost an extra 78 cents and decided to mail a cheque to the IRS (when you factor the price of a first class stamp, the total savings was only 32 cents, but we're now spending an extra $19 per month on Lifelock after the return was stolen from our mailbox and we became victims of identity theft) would be willing to spend upward of twenty grand rather than $3,368.

Perhaps he has an intuitive sense that this transfer won't work, just as I had a strong premonition that our pregnancy after IVF#1 would result in a miscarriage. I'm trying to figure out how not to be pissed if this FET produces another BFN. These behind the music stories seem to illustrate that there is more involved than a simple game of high risk and high reward. Sometimes we're unaware of potential that is sitting on our self gathering dust. Sometimes it's a matter of waiting for the right opportunity and right conditions. Sometimes a small adjustment can have a big impact. I'm just hoping that somewhere between cleaning out the freezer or modifying my protocol with a new stimming cycle, our greatest hit is out there.

Sunday, 13 April 2014

Mum, Dad... We're Infertile...

Look Who's Back! 
"So have you thought about what you'll say if your dad asks about having kids?"

Huh? It was quarter to five on a Saturday morning and Husband was dropping me off at the airport for my trip to Nashville to meet up with my father and to watch the women's Final Four Championship. I was still half asleep and could barely hold a coherent thought in my head. "Oh, I don't think he'll say anything."

Perhaps it was just wishful thinking on my part, but I've been on a good run. Five years ago, I was invited to travel to Washington DC to participate on a panel discussion and Husband and my parents joined for a mini-holiday. We were approaching our third anniversary in a few months, so my mother figured it was an appropriate time to ask the "when are you going to give us some grandchildren?" question over dinner. I dropped the bomb that I had no intentions to procreate and a very tense discussion ensued. So tense that the waiter kept topping up our wine glasses and didn't charge for the second bottle. When we parted at the end of the trip, my dad hugged me and whispered "I'm okay having cats for grandchildren." That was the last time the issue was addressed. My mother even surpassed my expectations when she didn't intrude with questions after little Myrtle was born.

I'm pretty adapt at thinking on my feet and answering questions on the spot, but this time I was truly caught off guard. We were eating lunch at a BBQ restaurant, and I dipped my napkin in a glass of water to clean some sauce off my fingers. My dad joked that he and my mother thought about inventing a cleaning product that they would name "Mom Spit". I brought up the fact that as a novice swimmer, I bought a bottle of anti-fog spray for my goggles, only to learn that veteran swimmers use spit, as it is more effective, free and convenient. Not only did I kill his idea, but I forgot that most people who don't work in healthcare don't talk about bodily fluids while they're eating. Then I took it one step further. As I have an insatiable desire to share my accumulation of useless facts, I described that my grandmother taught me that the enzymes in your saliva are specific to digest your own blood and no one else's. You can use spit to clean blood stains if it's your blood and your spit (try it some time, it really works!). This was a discovery among women in quilting circles and apparently a perfect opening for my father.

"So, when are you going to make any plans to share all the knowledge you've learned from your grandparents and hopefully from your mother and me?"
Oh fuck! he's asking the question...
"I'll write everything down." I deflected with the evasiveness of a skilled politician.
"I'm not worried about your memory." Damn, he's persistent!
Silence. [insert cricket sounds]
"Well, that shut you up."

Do you really want to hear my answer to your question?
Well actually, we're planning to transfer our remaining embryo from our first IVF cycle the day after I return. I've been shooting myself up with progesterone every other morning in preparation. You see, we're reproductively challenged. Yeah I know, the irony...ha-ha. No, I'm not going to tell you the specifics of our problem as they are irrelevant. This is where we are. We're infertile and we need the highest level of help and so far it hasn't worked.  No we don't need money, but we appreciate the offer. Money alone can't bring us a baby. I am so sorry. You may never be a grandparent...

May I ask some questions in return?
Do you have any idea how painful this burden of disappointment is? Do you have any idea how it breaks my heart when I see the longing look in your eyes when we see little kids? Do you know what a punch to the gut it is when I hear you talk about your time with 'little Myrtlepants'? Do you notice how quickly I change the subject when little Myrtle is introduced into the conversation? Were you suspicious of anything when you and mum asked if everything is alright multiple times when we spoke on Christmas Day? Will you and mum ever understand the rationale for my secrecy? Remember when I was little and there were times when you needed to conceal the truth to protect me? It's my turn to do that for you. I just can't bring you through the devastation of miscarriages and failed treatment cycles. I can't make it even harder for you to play with little Myrtle and look at your friends and their grandkids. I wouldn't wish the pain of infertility and pregnancy loss on anyone, and I especially can't inflict it upon the people I love the most.

"We'll know when we're ready." I answered him. "I still have plenty of time. Nana was 45 when she had you." That was the end of the discussion. Okay, I really feel really guilty about referencing my grandmother's age, as I know that a woman spontaneously conceiving and delivering a healthy baby boy in 1946 was the exception to all the exceptions of the norm. Hey, I'll use anything I have at my disposal. There were some practical reasons for my cowardliness. My mother was probably jealous enough of this father daughter trip, if I confessed to my father first, I'd never hear the end of it. I'd also never hear the end of it from Husband if I became the one who caved.

A few weeks earlier I was competing at our end of season swim meet. Over all I was pleased with my results, but I was disappointed with my time in one of our relays.  My coach caught up to me in the pool during my warm down and tried to console me. "Well, you had a lot of tough events today." I had competed in the 100 and 50 yd butterfly, swam the butterfly leg of our 200 yd medley relay and did another 25 yards of fly during my 100 IM. "Plus, your absences have been more noticeable lately." she added. I was so tempted to offer an explanation at that moment. Well, I was going through my second miscarriage during the month of December -I figured no one would want to share a lane with me! More recently, I missed the better part of a week as I had an embryo transferred into my uterus and your work-outs are considered the 'strenuous exercise' I had been instructed to avoid. No, it didn't work. I'm not pregnant, so I can't use that as an excuse for my poor time. These words came to me in my mind but couldn't make their way to my mouth. I froze in my own silence as it occurred to me that if I couldn't even tell my swim coach about our plight, how would I ever manage to tell my parents?

I'm becoming aware that I'm approaching my own 'put up or shut up' deadline for telling my parents if this cycle doesn't work and we're facing another fresh cycle. Although I don't know why I made such a suggestion as it's not an imperative detail and is probably a bad idea to impose more stress on ourselves during the final cycle. As I've reference before, concealing our infertility is the only aspect of the process that I can control, but it's time to admit that part of the desire for keeping this secret is that I would get to disclose when we have a happy ending to our story. I need to acknowledge that I only have domain over the secret, as my fantasy scenario is still out of my control and it's time to prepare for an alternate conclusion. When we left, my dad reminded me how much he and my mother love me and will always be there for me. "What ever you need." he added. I need your understanding when we tell you, Mum, Dad... we're infertile...

Hello Kitty joined us in Nashville for the Women's Final Four!
Jubilations! 2014 Champions
UCONN Men and Women! 

Thursday, 10 April 2014

Sunrise, Sunset

I was living in England in the late 90s when I received a call from my mother informing me that my 97 year old grandmother (my father's mother) was hospitalised with pneumonia and congestive heart failure. I hadn't completed my medical training at that time, but I knew that didn't sound good. I was scheduled to fly back to the States in two weeks for the Christmas holiday. "Should I come home earlier?" I asked my mother. "No, that's not necessary" she replied. "I'm a home health nurse on the hospice team and I don't think she's that close to the end." Apparently, over-confidence in one's professional skills runs in the family.

When I arrived at John F. Kennedy Airport and saw my parents waiting for me in the International Arrivals Hall, I knew her prognosis was poor. No one used to pick me up at the airport and I would have to schlep home on a Metro North train. "How's Nana?" I asked as soon as we hugged and greeted each other. "Leave your suitcase in the car tonight. We'll drive up to Boston first thing in the morning." was my father's answer. As we drove along the Hutchinson River Parkway and I was snuggled under a blanket and enjoying the snack that my mother had packed for me, I knew that my grandmother had already died.

There were five messages on my parent's answering machine waiting for our arrival (pausing for a second, remember answering machines?). The first one was from the skilled nursing facility, "Mr Allen, I am sorry to inform you that your mother passed away at 5:38 this evening. Two of her close friends were by her side and she was in comfort. It was very peaceful." My parents and I hugged again as we absorbed the news. "What time did the nurse say she died?" I asked. We played the message again. "My plane landed at 5:38" I told them. "I was setting my watch to that time when I felt the wheels touch the ground." My parents just looked at each other. "She knew you were coming home today." my father reported. "However, we didn't tell her any of your flight details." my mother acknowledged.

As both an atheist and a woman of science, I find it hard to accept that this is merely a coincidence. Of course, the version we like to believe is that she knew that I had arrived safely and felt that she was able to go. Perhaps, she was being spiteful and wanted to emphasize that I should have flown home earlier. The next morning I heard my dad on the phone discussing her details, presumably for the obituary, "Two surviving children, three grandchildren. No great-grandchildren, but there is one on the way, and she knew about it." This was news to me. Man, I was kept out of the loop in the days before Facebook. I have since done the math based on when my nephew was born and I figure she must have been barely six weeks when she disclosed. Oh, to be thirty-one years old and so confident in your first pregnancy...

I received an email from my father on the night before my transfer. "Grammy (my mother's mother) fell and broke her hip, going for surgery tomorrow. Please call your mother when you can." I love the fact I am almost thirty-eight and my Dad still calls my lone living grandparent 'Grammy'. My grandmother reached ninety years in January, and for many of those years she has enjoyed good health. About 10 or 12 years ago, she sustained a stroke, which significantly affected her speech and gait. However, she was able to maintain good humour about it. "I walk and talk like a drunk," she garbled, "but I'm a respectable drunk!" As a natural left-hander, her Catholic school upbringing forced her to use her right hand, which really aided her recovery and she did quite well in rehab. A year after my grandfather died, she had another stroke. This one didn't impair her physically as much, but it completely altered her personality. It was as if she lost the ability to laugh and she fell deeper into a depressive state. Four years ago, she moved into an assisted living facility, an event my cousin described as taking a kid to University. She initially thrived in her new environment, winning prizes at BINGO games and counting hours until her next meal in the dining hall. However, in the past year she really started to decline and was moved into the dementia unit.

I spoke with my mother later that evening. Not surprising, she was in nurse mode. We discussed the potential complications she could face after her surgery. Pneumonia, pulmonary embolism, sundowning in the hospital. Possibly falling again. We both weren't afraid to say what the other was thinking. Maybe it wouldn't be the worst thing if she doesn't make it out of surgery. She would be comfortable and would avoid a difficult rehab course. We all will leave this world one day, maybe this is her time.

The morning of my transfer, I was nervously waiting by my phone. I know it is really selfish, but I was more worried about getting a call informing me that my embryo didn't thaw, than getting an update on my grandmother. Fortunately, my phone stayed silent until my mother sent me a text letting me know my grandmother's surgery would be at 4 PM eastern time. That would be the same time as my transfer. I couldn't help to think that life could be starting to develop inside my uterus at the same time as my grandmother's life could be coming to an end.

This transfer process did not go quite as smoothly as the previous ones. My bladder was too full and I had to partially empty, which is a very challenging task. The tech was adapt with the ultrasound, but my RE struggled with the catheter placement. Seriously, after a mock transfer, five IUIs and two prior transfers and a hysteroscopy, he hasn't figured out how to navigate my uterus yet?  We had a different embryologist, but Husband wasn't too disappointed about not seeing his crush, as we haven't had much luck with her service. Our remaining blast was listed as a "grade 2" and required assisted hatching. I had a bit of cramping during and after the procedure. Oh, when I was taking my feet out of the stirrups, my foot lightly grazed my RE's inner thigh. Awkward.

Soon after we returned home, I received texts from my mother and cousin letting me know that my grandmother made it through her surgery and was in recovery. We'll have to wait and see how she does in the next few days, but I think her procedure may have bought her a few more months at most and I can only hope that she will be comfortable in those final months. Meanwhile, we'll wait for our verdict on beta day.

Monday, 7 April 2014

My IVF Pro Tips

I'm not quite a veteran, but after a fresh cycle and two transfers, I feel I've gathered enough experience to list some of the useful information I learned along the way.
  • We did some price comparisons with other REIs in the area, and my clinic was slightly less, but I now appreciate that the fees quoted on their website is sort of the base model price. ICSI and assisted hatching contribute to some of the hidden costs. Also the office bumped their expenses up a bit from when we first did our research, just to give us another reason to wish we started IVF earlier.   
  • Husband carefully reviewed both of our insurance policies and noted that his offered better coverage for IUI procedures by paying 75% (mine just paid for half). However, my employer pays my insurance premiums in full, so we would have ended up spending more than any potential savings. Recently, we received a bill for $834 from the lab as my insurance did not cover my karyotyping. Apparently, they will cover any genetic testing on a fetus from NIPT to amniocentesis and they did remit for the chromosomal analysis on the products from miscarriage #2, but no testing for me. Husband's insurance did fund his testing completely. You win some, you lose some.
  • When IVF was seeming inevitable, we starting holding on to those many credit card offers that come through the mail. We found one through Citi-bank that was offering 0% interest for 22 months. So, we charged our first cycle. Sadly, the balance hasn't changed too much, after paying off a bit, we charged our FETs. The ultimate goal is to have a baby and have the debt cleared by the time interest charges start to apply. 
  • We both maxed out our Flexible Spending Accounts (FSA) which not only translated to almost $2,000 in tax related savings, but also we saved all our receipts and sumbitted at the end of the year so that we could have $5,000 coming our way in the new year. 
  • I wish we had looked into Attain a bit more. Through a naive set of eyes, we feared that if we became a first time IVF success, we could have paid twice as much as our clinic's cost for one cycle. I felt that Attain made more sense for couple who want more than one chid, or for couples with longer odds who anticipate doing multiple cycles (again, very naive). I'm a bit envious as it seems that Attain couples don't have quite the same 'OMG how are we going to afford another fresh cycle?' stress with each failed cycle, but it also seems that Attain has some strict rules that must be followed. We would still have the additional costs of PGD testing and I know that costs aside, I don't want to do any more treatments beyond what we could yield from a second fresh cycle. At least with Attain, you don't have the feeling of spending an obscene amount of money and having nothing to show for it.
  • It pays to double check. I requested a printout of my entire account as we had paid $2,000 toward our balance when my insurance was delaying payment and I wanted to make sure we were receiving appropriate credit. Not only was it really interesting to see the breakdown and distribution of the charges for one IVF cycle, I noted that they had charged for a superfluous ultrasound during one of my IUI cycles. Recently, I discovered that they billed for a saline sonogram when I had just a regular ultrasound done. I also queried a $55 material/supplies charge, which was for the PIO syringes and needles. I actually never received a new supply with my FET, so this was a fraudulent charge, but as I have access to supplies from my office, I will continue to refuse. It sucks as we have these stupid safety covers on our 3 ml syringes that makes them harder to use, but every time I struggle, I remind myself that I'm saving us money. 
  • My RE insisted that I needed to have my estrogen levels drawn at his office and processed through their lab as not all outside labs can process a stat estradiol level and he's uncertain of their validity. However as checking my CD#9 progesterone level was not as time sensitive and produces a clear cut result, I did this at my regular lab. We used a diagnosis code of 'anovulaory cycle' (completely accurate) and billed my insurance for a savings of nearly $200.     
  • When I was ordering the meds for my IVF cycle, I only used Freedom Pharmacy for the injectable stims, antagonists and trigger. I had Misery call the dexamethasone and oral estradiol to CVS and made my insurance pick up the tab. I went to a compounding pharmacy (which is in walking distance of my office) with Freedom's price list for the PIO and micronised progesterone. I played the "I'd rather support a local business" card and asked if he could beat Freedom's fees. I wasn't planning to reveal who I was, but when asked, I admitted "Yes, I'm that Jane Allen." I probably speak to the pharmacists on a weekly basis, so we commented that it was nice to have a face to go with the names. Not only did the pharmacist offer me his employee discount, he revealed his own infertility struggles. 
  • As I know my insurance will only pay (minus my $10 copay) for one month's worth of medication at a time, (Actually it's a 30 day supply, as I recently thought I could outsmart them by picking up one box of 4 patches at the end of March and then getting one more in early April) I should have started stock-piling them each month when the idea for transdermal estrogen first occurred to me in December. Interestingly, my insurance did pay for all the patches for my first FET at 50% on a one time only basis (I think they may have felt guilty for trying to enroll me in their maternity program again).  I considered asking some of my colleagues in other offices if they have any estrogen patches in their sample closets, but as the compounding pharmacist offered to order stimming meds (if I need them for a second cycle) and sell them to me at cost, it's worth it to keep getting my patches from him.         
  • If a fellow infertile offers you any leftover meds, take them! Remember the episode of Friends where Chandler gets stuck in an ATM vestibule with Jill Goodacre during a city wide black out? He politely refuses when she offers him a stick of gum, but then reconsiders, if Jill Goodacre offers you gum, you take it. If Jill Goodacre offers you a dead animal carcass, you take it! before declaring that gum would be perfection. I didn't immediately jump on Jen S's offer for Ganerelix, and I should have as I was nearly stranded at the end, but she came though big time with an overnight delivery. I recently passed on an opportunity for some stimming meds prior to starting my FETs, as we might not need a second fresh cycle, but if I didn't end up needing them, I could always pay it forward to someone else.
  • I use the applicators that come with Pre-Seed lubricant to insert my vaginal progesterone.  The box claims that their product can help you get pregnant, but this is probably not the way that they intended. A daily serving of dried fruit (apricots or pears) helps counteract the GI effects from the PIO injections. 
  • Travel tip: an empty shampoo bottle works for a functional and discreet sharps container. 
This list is not necessarily meant to provide any suggestions or recommendations, but to reflect what I've learned by questioning and getting creative. I also acknowledge that I have a few insider advantages and access to various resources. I think the ultimate lesson I've learned is that it is necessary to be an advocate for yourself. No one else is looking out for your best interest.

Wednesday, 2 April 2014

Late for the Party

No one ever wants to be the first to arrive for a friend's party or social event. It's incredibly awkward. The hosts are still bustling about, putting the finishing touches on their appetizers and filling the ice bucket. The lady of the manor may still have her hair pinned up in rollers. They seem annoyed by your presence, as they mutter under their breath, "who shows up to a party on time?" You feel reluctant to start snacking on the nibbles, as it seems that the hosts want to keep it on display for the other guests who will be arriving.

The key is to arrive fashionably late, so that you can avoid being that person. A sound strategy is to coordinate your entrance with another guest. There's always strength in numbers. Of course, there is a danger of missing the window for being fashionably late and merely being late. Such as when you have another event scheduled on the same day, and are trying just to make an appearance. By the time you arrive, the food is picked over and the ice has melted. Some guests are getting ready to leave. The ones who are keeping the party going, are pretty buzzed, which really raises awareness of your soberness. Both you and the hosts are wondering why you bothered to show up at all.

I can't help to wonder if the first woman in her group of friends to have a baby feels like that initial party guest. It's awkward and isolating. She may feel as if she is on display. It's hard as no one else can relate to what she is going through, and she may at times feel a bit envious of her child free friends and their fun activities. She tries not to acknowledge that it hurts a bit when she is excluded, after all this was inevitable. She may start a new circle of friendship with other new mothers in the area, but mostly all she has to do is wait.

Wait a little while longer, until one of her original friends has a baby of her own. Then another one procreates. Pretty soon, the ratio of mothers to non-mothers has shifted and the breeders are rocking the party with their babies. The inaugural mother may even be pregnant with her second at this point in time. It's now the child free members who feel awkward and isolated. Pretending not to feel hurt when they are excluded from play dates and children centred activities, while they acknowledge that they really wouldn't want to join. After all, this was inevitable and it is a good time to reconnect with some other nulliparous friends. However, if the last woman within her circle of friends finally has a baby, is she viewed as the guest who shows up too late for the party?

As I hear the echoes of Husband's words 'we're falling behind' as our friends started procreating, it is now resonating that we've been left behind. The first ones to reproduce have a daughter who is turning seven. The youngest, Sam and Diane's third, will be two at the end of the year. Other than Penny, who expressed her volition for baby #3, and another close friend who is exploring options for fertility treatments, I don't think any other friends are planning on having any more kids. Even Myrtle seems committed to keeping little Myrtle as an only child (although that decision is driven by the fact that Mr Myrtle still doesn't have a full time job and they are living in a shoe boxed sized one bedroom condo). A few friends have even closed up the shop with a vasectomy or tubal ligation.

I fear that even if we do arrive with a baby of our own, we still won't be welcomed as members of their club. They will have moved passed the infant stage and will be in the phases of coaching soccer teams and building dinosaur dioramas. Their kids are interactive with independent personalities and are much more interesting than a three month old baby. No one wants to hear about your sleepless nights due to teething troubles. The terrible twos? Don't remind me! Those who do remember may only be too eager to share their acquired wisdom; after all they are experts. I don't mean to sound unappreciative of any advice, it's just that I'm accustom to being the knowledgeable one. It's going to be a different role for me. Furthermore, not that I ever really wanted to do play dates in the park, as that's not really my scene, I am concerned that my presence with a baby could be viewed as a burden. It's such a drag to go out with Jane and her kid...we have to fuck about with the car seat and the pram...find a quiet spot to feed and change her baby... I'm so glad my kids are ambulatory and potty trained... Once again, the awkwardness and isolation returns.

I used to joke that if we ever got around to having kids, our friends' kids could serve as baby sitters. Now, it seems that such a scenario may become a reality. Mostly, I fear that my bitter musings will transition into real life whining and crying from a frustrated child who can't engage in the same activities as the 'big kids', who have rejected him or her as playmate. Even at the earliest projection, there could be two and a half years between little Myrtle and my future daughter. "Little Myrtle is not going to want to play with her." I expressed recently. "Of course she will!" Myrtle knowingly replied, which I could only hear as I will make her play with your daughter to just to appease you... Sheesh. She will probably have to bribe her.

I know I will be very fortunate just to receive an invitation to the party, even if I end up arriving very late. Much of my tardiness is due to my own doing; I flittered about and took a long time getting ready. I lacked the foresight to anticipate the possible delays that would impede our entrance. Still, the opportunity to experience parenthood along side my close friends and to watch our children grow up together, is one more thing infertility is denying me.