It's almost 11pm on a hot summer night and we're listening to JT singing Mirrors live in concert down the street from the comfort of our own bed.
Beautiful song about growing old together.
Love it.
Sent from my BlackBerry device on the Rogers Wireless Network
In limbo: "in an indefinite state; on hold....bordering hell" aka the infertility roller coaster and coping with recurrent pregnancy loss.
Wednesday, July 31, 2013
My lucky seven
So we got our results. I have not blogged yet that we
decided back in January that we would not do a “fresh” embryo transfer for our
next IVF cycle. We were advised by three clinics to do Preimplantation Genetic
Diagnostic (PGD) testing of our embryos to ensure all of the chromosomes were
normal; thus lowering the chance of miscarriage, stillbirth, and a child born with
certain heath issues. It did not guarantee that we would have a healthy child though as not all genetic tests are done,
but given that most miscarriages are due to abnormal chromosomes (as confirmed
in my first pregnancy) the chances of this working if the embryo is “normal” is
80% per embryo transfer. The same chance as using an egg donated from a younger
woman. This is ethically debated by some people, but we chose to reduce our
risk of miscarriage and stillbirth. Enough
heartbreak already.
What this used to involve was a biopsy of one of the eight cells
formed in a 3 day embryo. There was a chance the embryo could be damaged by the
biopsy or they chose a cell that was normal but others could be abnormal. Now,
embryos are tested at the blastocyst stage (day 5-6) where there are hundreds of cells,
and a sample is taken from the part that forms the placenta which is safer and a far more
conclusive test, but not 100%.
Our IVF cycle from last year had the following results:
19 eggs and discarded 2, 17 fertilized by ICSI.
15 embryos made it to day 3 and 14 made it to day 5. There
were 6 high quality blastocysts in total, and we were told the results were
outstanding. My clinic has very high standards for freezing so not all day 5 embryos were frozen.
2 transferred fresh – early miscarriage
2 transferred frozen – chemical pregnancy
2 transferred frozen – early miscarriage
So of course I was very nervous about this current cycle. I
am a year older but hoping we would have equivalent results. We got:
16 eggs and discarded 3, all 13 fertilized by ICSI. 12 made it to day 3 and day 5. I was disappointed
being a high achiever. They did though get 7 high quality blasts but one of them was
lagging a bit behind. Again an outstanding cycle. The clinic reminds me, it's not
the quantity of eggs, it is the quality.
Then there was the wait for the biopsy results. The samples
from the placenta cells were sent to California for testing last Friday. The 7
blasts were put on ice until we knew the results. If we had any normal ones, we
planned to wait until this winter to transfer them when I am (hopefully) done my Masters degree.
I didn’t want a miscarriage right before I defended, nor have bad morning sickness
if it worked.
I read the chances for a woman in her late thirties is that about
25-30% of the number of blasts biopsied will be chromosomally normal. If I was
younger, it is more about 40-50%. I braced myself that none may be normal and
just hoped for three of the seven.
This past week, I was feeling more defeated and trying to be
more accepting of our lives childless. I re-sent our adoption application to the
Ministry and they said the fall education sessions were full so that meant no
real movement til Spring of 2014. I looked up articles and support groups on
childlessness, some of them I want to post on this blog.
Back to the biopsy….my doctor called me today. I knew the
results must have come back. Deep breath, brace
yourself.
Doc: The results came back. ALL SEVEN (oh shit, oh shit) came back completely normal.
Me: Really? (in an
annoyed WTF voice)
Doc: That’s a good thing! Our new lab director who has
worked all over the world is shocked, he says this is unheard of!!
Me: Then what is the problem??? A number of the blasts from
last year would likely have been normal too and that didn’t work so what is it
is then if not the embryos?
Doc: Well last year we didn’t test them, but yes if some
were normal it could have been due to that small scar in your uterus that is
now fixed.
I started to relax and we spoke of next steps and the number
of embryos to transfer at one time. She said the chances of having twins are higher now than before and
reminded me of all the complications that could result. Even though it is
cheaper and less time consuming to do multiple transfers than single transfers, and the fact that couples going through infertility want to finally complete their families with as much ease as possible, the chance of stillbirth, and health complications to myself (I'm not a 5'10 big boned woman) and especially our children, is not worth the risk. Ugghh. Okay, I know more than my share now about stillbirth and kids with health issues. Agreed.
I called Gerry. I told him to brace himself which I know was
not fair because last week our rental condo flooded for the second time in
eight months (just 3 weeks after all the repairs were finally finished - long story). He thought our whole building got demolished. I told him the news and could tell he was
beaming over the phone. Then I started to smile. We are at a high point on the
infertility roller coaster again and I am hoping we don’t fall.
I’ve been beaming all day thinking of my lucky seven.
Saturday, July 27, 2013
Love, reign o'er me
Gerry was away this weekend in Seattle deservedly having some fun while I studied. Last night I watched a movie on Netflix called Reign Over Me, which is about a widower, who after 5 years is still grieving the loss of his family (and dog) from 9/11. I saw it years ago and watched it again from a different lens.
In addition to creating anxiety provoking thoughts of losing my family one day, something I think of at times whether or not I have kids, the movie was so much about what many of my stillbirth babyloss group friends and experts in the field have been discussing, and very much applicable to loss of life at any age:
Grief can result from a traumatic experience and lead to PTSD.
Grief should not be automatically medicalized and treated with prescriptions.
Grief does not have a timeline or an expiry date.
Grief is handled differently by each person.
Sometimes the best way to help is to just be there.
In addition to the message the movie gives, the title is inspired by a classic song Love, reign o'er me written by The Who and covered by Pearl Jam who I loved in my younger days. It is poetic and beautiful and sung by Pearl Jam with so much power. I didn't get the full meaning when I was a kid listening to The Who's version but loved the song anyway.
Peter Townsend, who wrote the song, said it was about a teenager on the edge of suicide wanting to surrender to the inevitable and drown only this time in the rain yet gets reigned back in to the same old shit just slightly more empowered at a new level to try again. "He's weak still, but there's a strength in that weakness." I can honestly say I've felt that way a few times these past couple years.
Only love
Can make it rain
The way the beach is kissed by the sea.
Only love
Can make it rain
Like the sweat of lovers
Laying in the fields.
Love, reign o'er me.
Love, reign o'er me, reign o'er me, reign o'er me.
Only love
Can bring the rain
That makes you yearn to the sky.
Only love
Can bring the rain
That falls like tears from on high.
Love, reign o'er me, reign o'er me, reign o'er me.
Love, reign o'er me, reign o'er me, reign o'er me.
On the dry and dusty road
The nights we spend apart alone
I need to get back home to cool cool rain.
I can't sleep and I lay and I think
The nights is hot and black as ink
Oh God, I need a drink of cool cool rain.
In addition to creating anxiety provoking thoughts of losing my family one day, something I think of at times whether or not I have kids, the movie was so much about what many of my stillbirth babyloss group friends and experts in the field have been discussing, and very much applicable to loss of life at any age:
Grief can result from a traumatic experience and lead to PTSD.
Grief should not be automatically medicalized and treated with prescriptions.
Grief does not have a timeline or an expiry date.
Grief is handled differently by each person.
Sometimes the best way to help is to just be there.
In addition to the message the movie gives, the title is inspired by a classic song Love, reign o'er me written by The Who and covered by Pearl Jam who I loved in my younger days. It is poetic and beautiful and sung by Pearl Jam with so much power. I didn't get the full meaning when I was a kid listening to The Who's version but loved the song anyway.
Peter Townsend, who wrote the song, said it was about a teenager on the edge of suicide wanting to surrender to the inevitable and drown only this time in the rain yet gets reigned back in to the same old shit just slightly more empowered at a new level to try again. "He's weak still, but there's a strength in that weakness." I can honestly say I've felt that way a few times these past couple years.
Only love
Can make it rain
The way the beach is kissed by the sea.
Only love
Can make it rain
Like the sweat of lovers
Laying in the fields.
Love, reign o'er me.
Love, reign o'er me, reign o'er me, reign o'er me.
Only love
Can bring the rain
That makes you yearn to the sky.
Only love
Can bring the rain
That falls like tears from on high.
Love, reign o'er me, reign o'er me, reign o'er me.
Love, reign o'er me, reign o'er me, reign o'er me.
On the dry and dusty road
The nights we spend apart alone
I need to get back home to cool cool rain.
I can't sleep and I lay and I think
The nights is hot and black as ink
Oh God, I need a drink of cool cool rain.
Tuesday, July 23, 2013
Time to fucking blog
Last night was tough. I broke down crying from all the physical pain I've been experiencing the last couple days just feeling exhausted from what these treatments are doing to my body.
I can't do this again.
I don't think I can do this again.
Why is this happening to us?
I'm tired. It hurts. This is so painful.
I hate feeling this way.
I'm done.
Don't hold me to this, I may feel differently later.
This cycle may not work either.
I'm done.
My waist girth measured at almost 40 inches and I'm up five pounds since starting the IVF cycle.
I was back at work today. I didn't want to go back but I've missed three days already. I changed blouses twice this morning to find something loose and concealing. A pregnant colleague came to our staff meeting and got the royal gush treatment. 3D ultrasound pics were shared. Then gender talk, crib talk, mat leave commencement talk, how wonderful you look talk. Fuck, can we start this bloody meeting already? Most of the time I'm relatively fine with it, especially with my group friends because they truly deserve such happiness, but today I was in no mood for it. Some of the people there knew about my struggles and lead the gushing. I hate pregnant people. I hate people who love pregnant people. Only my group friends understand this.
No one asked me how I was feeling having called in sick the day before. I felt like crying by the end of the afternoon. I was trying not to be pissy with the union rep but I was on the edge. My abdomen was hurting, it was hard to walk, and I was so tired. I thought I was going to cry as soon as I got home. But I didn't. I started to surf the internet and saw pics of the Royal Baby. A really beautiful picture of Kate holding him with a quote "It's a moment that any parent having just given birth will know what this feeling feels like". Fuck that. I'll likely never have that feeling. Why can't I have a picture like that? I then looked up my bloodtest results online from the four vials they painfully drew from me this morning but I couldn't understand if the slightly abnormal ranges were anything to stress over. Whatever, I'm still alive from the OHSS...time to fucking blog.
I can't do this again.
I don't think I can do this again.
Why is this happening to us?
I'm tired. It hurts. This is so painful.
I hate feeling this way.
I'm done.
Don't hold me to this, I may feel differently later.
This cycle may not work either.
I'm done.
My waist girth measured at almost 40 inches and I'm up five pounds since starting the IVF cycle.
I was back at work today. I didn't want to go back but I've missed three days already. I changed blouses twice this morning to find something loose and concealing. A pregnant colleague came to our staff meeting and got the royal gush treatment. 3D ultrasound pics were shared. Then gender talk, crib talk, mat leave commencement talk, how wonderful you look talk. Fuck, can we start this bloody meeting already? Most of the time I'm relatively fine with it, especially with my group friends because they truly deserve such happiness, but today I was in no mood for it. Some of the people there knew about my struggles and lead the gushing. I hate pregnant people. I hate people who love pregnant people. Only my group friends understand this.
No one asked me how I was feeling having called in sick the day before. I felt like crying by the end of the afternoon. I was trying not to be pissy with the union rep but I was on the edge. My abdomen was hurting, it was hard to walk, and I was so tired. I thought I was going to cry as soon as I got home. But I didn't. I started to surf the internet and saw pics of the Royal Baby. A really beautiful picture of Kate holding him with a quote "It's a moment that any parent having just given birth will know what this feeling feels like". Fuck that. I'll likely never have that feeling. Why can't I have a picture like that? I then looked up my bloodtest results online from the four vials they painfully drew from me this morning but I couldn't understand if the slightly abnormal ranges were anything to stress over. Whatever, I'm still alive from the OHSS...time to fucking blog.
Monday, July 22, 2013
OHSS
The egg retrieval was on Saturday. Despite being "legally impaired" from all the drugs for the procedure, and needing to stay off my feet as much as possible, we went to a BBQ later that evening with my group friends where I just lounged. The next day I felt far worse and rested the whole day. The bloating was not going down and I had bad abdominal pain so I took tylenol every six hours. It hurts to drink water even though I need lots of fluids. This was far different from my IVF experience last year where my ovaries were very enlarged after the egg retrieval but I was fine walking around and just had to remind myself to take it easy so they settle down quicker. Today the symptoms weren't much better and I couldn't go to work so I called the clinic and they confirmed what I thought - I have a moderate form of ovarian hyperstimulation syndrome (OHSS) . Shit.
So I'm frustrated that I'm still on bed rest, having been home since Thursday. Ventures from my bed and couch involve a quick grab of food/gatorade from the kitchen and then a trip to the bathroom to ensure I pee it out later. Netflix is my new best friend as I'm quite tired of the "Duchess is in Labour!" updates every time I surf the internet.
With all this, I'm feeling pissy, not angry, but just tired of what we need to go through to conceive when it is [or so it seems] so easy for others.
So I'm frustrated that I'm still on bed rest, having been home since Thursday. Ventures from my bed and couch involve a quick grab of food/gatorade from the kitchen and then a trip to the bathroom to ensure I pee it out later. Netflix is my new best friend as I'm quite tired of the "Duchess is in Labour!" updates every time I surf the internet.
With all this, I'm feeling pissy, not angry, but just tired of what we need to go through to conceive when it is [or so it seems] so easy for others.
Friday, July 19, 2013
IVF - It's Very Frustrating
I worked from home yesterday and took today off. It doesn't matter what type of fertility drug I take, from clomid pills to IVF injections, to progesterone suppositories or injections to keep my uterine lining plump, I get so freakin' bloated. It is hard to sleep, turn over, walk around, or sit comfortably. Then I need to find clothes that can try to conceal the bump so I don't get excited looks from people I know. The IVF injections cause the most bloating, not just because of the medications but due to the number of eggs your ovaries are harvesting. Because of that I need to take it easy and not lift anything heavy, so that leaves the grunt work to Gerry which makes me feel guilty so I do what I can anyway. This is the only time I sympathize with women complaining in the last month of pregnancy that they are so ready to get it over with.
These pics below are of me at the beginning and end of a day. The bloating is bad 24/7 but gets worse as the day goes on. My abs are far from washboard but generally I'm a size six. Note though that not all women get this reaction, especially at this degree. Others can get bad headaches, bad bruising on the stomach where the injections are done, and terrible digestion problems but I'm pretty free from all that. There is also a pic from a fertility journal my cousins gave me that I flipped through again a few weeks ago. IVF - yes, it's very frustrating....many people comment that this process is exciting. Not.
These pics below are of me at the beginning and end of a day. The bloating is bad 24/7 but gets worse as the day goes on. My abs are far from washboard but generally I'm a size six. Note though that not all women get this reaction, especially at this degree. Others can get bad headaches, bad bruising on the stomach where the injections are done, and terrible digestion problems but I'm pretty free from all that. There is also a pic from a fertility journal my cousins gave me that I flipped through again a few weeks ago. IVF - yes, it's very frustrating....many people comment that this process is exciting. Not.
Thursday, July 18, 2013
The Wrong Side of the Stats
I was at my fertility clinic today and I picked up a brochure on their latest success rate statistics. Due to recent changes in the clinic with physicians, lab staff, protocols and technology (particularly how eggs and embryos are frozen using vitrification), my clinic has been through a big upheaval of late. The clinic says their success rate has now increased by 10%, where their success rate for pregnancy rates (positive bloodtest on day 31 of a cycle) per embryo transfer has risen from an average of 57% to 67% and clinical pregnancies (where a gestational sac is confirmed by ultrasound) is now at 60%. The percentage of cases where a couple takes home a live baby is of course lower due to miscarriage and stillbirth, but those stats need to be dug for a bit deeper.
So looking at these stats, especially relative to my age/health and thinking about the number of embryo transfers I have had plus the two pregnancies that have resulted from IUIs, I should have had a baby by now. Period. That's why my doctor said after our fourth miscarriage, where the cause of our infertility and recurrent pregnancy loss is still unexplained by three different clinics, that we are on "the wrong side of the stats". So once in a while I look at the stats to give me some hope, but I really can't count on them anymore. For some reason, I keep being dealt a bad hand of cards, and the only assurance I get from my doctor is that she has seen many other couples in the same situation and we just need to be patient. She says "we will get there, it is just taking us a lot longer than we thought it would."
So looking at these stats, especially relative to my age/health and thinking about the number of embryo transfers I have had plus the two pregnancies that have resulted from IUIs, I should have had a baby by now. Period. That's why my doctor said after our fourth miscarriage, where the cause of our infertility and recurrent pregnancy loss is still unexplained by three different clinics, that we are on "the wrong side of the stats". So once in a while I look at the stats to give me some hope, but I really can't count on them anymore. For some reason, I keep being dealt a bad hand of cards, and the only assurance I get from my doctor is that she has seen many other couples in the same situation and we just need to be patient. She says "we will get there, it is just taking us a lot longer than we thought it would."
Monday, July 15, 2013
Day 8
I'm on my eighth day of IVF injections. This now involves three needles per day, plus bloodtests three times a week, and acupuncture two to three times a week. Last year when I went through this I had dreams I was covered in needles.
This year, it has been much easier....the needles don't hurt as much (maybe because Gerry is a pro at it now, and the evening shot changed to epi-pen format) and so far I have been feeling pretty okay except for the really bad fatigue that kicked in last Friday. It's now harder to move around with the pressure and bloating so I'm starting to stay off my feet more. The more you move, the longer it takes for the ovaries to shrink down after the egg retrieval. Today I felt a bit emotional and distracted at work - yep, the hormones are rising. Still though I've felt worried lately that I may not be responding to the drugs as each IVF cycle can be much different than the last. Today I had my first ultrasound and luckily I got a bunch of eggs growing in each ovary: Relief (for now).
This year, it has been much easier....the needles don't hurt as much (maybe because Gerry is a pro at it now, and the evening shot changed to epi-pen format) and so far I have been feeling pretty okay except for the really bad fatigue that kicked in last Friday. It's now harder to move around with the pressure and bloating so I'm starting to stay off my feet more. The more you move, the longer it takes for the ovaries to shrink down after the egg retrieval. Today I felt a bit emotional and distracted at work - yep, the hormones are rising. Still though I've felt worried lately that I may not be responding to the drugs as each IVF cycle can be much different than the last. Today I had my first ultrasound and luckily I got a bunch of eggs growing in each ovary: Relief (for now).
Sunday, July 14, 2013
You Are Not Alone
Gerry and I had the privilege of volunteering this week at Still Life Canada's first conference: You Are Not Alone - Bringing Stillbirth Out of the Shadows. Our friends founded this organization after the passing of their babies to promote education and awareness to health care professionals and society in general, and to provide support to bereaved parents as these specialized services are so lacking.
I cannot say it was successful because that word is just too limited to describe the impact this conference had on those health care professionals, bereaved parents, and volunteers who attended. It was truly amazing to hear from keynote speaker "Dr. Jo" from the MISS Foundation in Arizona who discussed the marginalization of stillborn deaths and her own experience losing her daughter almost 20 years ago. Too often, society views these losses as a fetus rather than a person who cannot be replaced by a subsequent child, and thereby instills this dismissiveness that it was "meant to be". Comments like these are not given to parents of children who pass at any other age.
It was this woman who my friend had received profound support from days after her daughter was stillborn last year. I went up to Dr. Jo, and with tears welling up in my eyes, I thanked her for "saving my friend".
It was also heartbreaking, educating, and truly inspiring to hear from the bereaved parents who had the courage to tell their stories as panelists and attendees. Gerry had never attended "group" (support group meetings) with me and was particularly impacted by these stories when he got home.
Recurrent pregnancy loss does not compare to the grief experienced by these parents, though Gerry and I both resonated with certain themes raised. For me, one was blame. Dr. Jo told the story of an aboriginal woman who for cultural practices, never spoke about her baby after five days since the death. She never even told anyone the name of her baby. In their culture, it is bad luck to buy anything in preparation for the baby during pregnancy, but out of excitement she did so anyway and would hide the items. She blamed herself for the next 14 years that it was her fault her baby died. She never told her subsequent children about their sister until she met Dr. Jo. Gerry and I had bought a few items during our travels for the baby we would have one day. One thing I had got was a Bon Jovi Slippery When Wet onesie. When we told family and friends about our first miscarriage, I had mentioned the onesie....and in typical Indian fashion I was blamed by a couple of relatives for buying things before the baby was born. I quickly told my mom I wanted to hear nothing of it. I was angry enough as it was and those comments were making things worse. Still, it affected me and we never bought anything else after our first miscarriage.
I cannot commend the organizers enough for this experience.
Love and forever remembrance to Scarlett, Toren, and Amelia.
Sunday, July 7, 2013
Indulgement
We were at the River Rocket Casino Rib & Seafood Buffet yesterday for a family dinner. Gerry noticed my heaping spoonfuls of creamy mash potatoes....something I only have small bits of on thx-giving and xmas. I figured the bloating is already starting so bring it on!
Friday, July 5, 2013
5 years
Today is our five year wedding anniversary. We went to dinner at the same restaurant on the beach where we got married. It was so great to have wonderful memories flood back. I've felt in some ways this date was looming as I was sure we would have a child by now, but I've been focusing more recently that through it all, our marriage is stronger than ever. Infertility and recurrent pregnancy loss, along with a blow to your finances, can take a real toll on a marriage. We have been through some hard times and grief, some awful arguments out of frustration and from not always being on the same page at the same time; but we knew that the key to getting through all of this was to ensure we have a strong foundation.
Happy anny boo, xo
Happy anny boo, xo
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