IVF Positively Scary

I broke today.

Today was roughly 36 hours before I was scheduled to take my blood test to see if I am pregnant after our first round of IVF.

I found out recently that the drug that women are put on following implantation – progesterone of some sort – can delay or prevent a cycle from starting naturally. I had somehow become dependant on the idea that my body would naturally let me know either by my cycle showing up or not if I was pregnant. I’m lucky in that my body has always been reliable that way about giving me bad news.

When I realized the first time I might know that I was not pregnant would be from a nurse calling to tell me the results of blood work, I broke down and did what I said I was not going to do and took a home pregnancy test.

I was absolutely convinced that this was going to be negative. Absolutely.

It was positive.

I know this is the part where I’m supposed to be unbelievably excited, grateful, happy and overjoyed. Instead what I felt was sheer uncontrollable terror.

The problem is after a miscarriage, after a death in the family, after cancer, after celiac (okay not so much celiac) after so much loss it’s hard to believe anything good is going to happen. And, I still can’t bring myself to pin my hopes on this.

We still need the beta test results. I may be pregnant, but it could be a chemical pregnancy and we’ll get to week 7 and there will be no heart beat. The baby could easily die in the first trimester. The baby could still die in the second and third trimester. I know two women personally who had late term still births. And, as I write this one friend’s daughter who is only a couple of weeks old remains hospitalized.

There is a terror in me about loosing again. Wondering why I even tried again if I can’t face losing again. IVF is in some ways a lottery. The odds of success are less than 50% in most cases. We haven’t beaten those odds yet.

Infertility, miscarriage and death have taken away from me the ability to be hopeful and joyful about an early positive on a pregnancy test.

I don’t know when I’ll be able to celebrate this moment. When we get the beta numbers? When we hear the heart beat? When I feel the baby move? When I’ve given birth? After my child graduates? Or, has their own child.

I’ve spent my time on IVF forums and I see the women there excited and supportive of the women who do and do not make it. I feel selfish and parasitical not to be overjoyed at this moment that so many would love to have. But it’s not that simple for those that have lost. I know there are so many women who have gone through this multiple times. I can’t imagine the strength that takes.

I did manage eventually to move past the panic attack with big help from a couple of friends. For the next few week, at least, it’s one day at a time.

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My Miscarriage

Miscarriage

I wasn’t planning to write this post until I reached the one year anniversary of my miscarriage in September 2013. However, a friend’s recent experience reminded me that this remains a topic that is not generally discused. And, as a result of this taboo, many women are left feeling alone and like they have failed. It wasn’t until after I had my miscarriage that I found out how common they are and how many women in my life have gone through one (or more).

I hold a personal belief that living a transparent life is something that is good for me. And so, I would like to share my story of miscarriage in the hopes that another woman will not feel as alone when she experiences one.

After hitting some roadblocks in the adoption process my husband and I decided to go the biological route. We were, of course, very happy when we found out we were pregnant. Having a number of friends who already have kids we had a lot of support. We were lucky enough to get taken on with a well known midwife clinic and we had managed to find a number of subsidized daycares that had open wait lists.

week7-facial-featuresI was a bit concerned about the pregnancy from about 6-weeks. I had very few pregnancy symptoms. No sickness, no dizziness, no real weight gain. Everyone told me not to worry and that I was just one of the luck ones. But, I still worried.

I was not entirely a surprise when we went for our 12-week ultrasound and were told that there was no heartbeat and that the gestational sack had calcified.

In hindsight there were some things I wish I had known to self-advocate for. My OBGYN dismissed my concerns when I asked about testing my beta HCG’s after we found out we were pregnant. He told me that if the results were not good there was nothing they could do. I understood then, and now, that they could not have done anything to save the pregnancy. However, in hindsight they could have saved me from a truly brutal miscarriage and prepared me for the likely negative outcome of this pregnancy.

I also wish I had pushed harder for an early ultrasound. Many women are given an ultrasound around 6-8 weeks. This ultrasound is to check gestational size and confirm the presence of a heart beat. Here again, it would not have made it possible to save the pregnancy, but it could have given me a much earlier warning that something had gone wrong with the pregnancy and allowed me more time to make choices.

midwiferyLogoThe midwife discouraged the early ultrasound. The philosophy of most midwife clinics is as few interventions as possible, ultrasound being seen as an intervention. I’m generally a supporter of natural routes. But, I wish I had listened to my intuition that something was wrong. Instead, I felt like the OBGYN and the midwife both treated me as an over anxious patient who needed to be talked off a ledge as opposed to a woman who genuinely had concerns about what was going on with her body.

The medical system left a lot to be desired when it came to handling the miscarriage. I am thankful that the lab where the 12-week ultrasound was preformed called in a doctor right away to give us the news that I had what is called a missed abortion. I am thankful that they didn’t make me wait to see my own health care practitioner to get the results. It was obvious from the technician preforming the ultrasound that something was wrong and the wait would have been torture.

Unfortunately this is where smooth transition of care ended. The lab where I had the ultrasound was not equipped to preform a D&C, a type of surgical abortion, nor are they equipped to prescribe the medication to trigger a chemical abortion. They sent me home with the news that the fetus inside me was dead and that I needed to contact my health care practitioner.

Missed-abortionWhen I contacted my midwife she was unable to help. A midwife clinic is not equipped to handle a missed abortion.

The only option given to me was to set up an appointment for an abortion at a clinic or hospital. I booked the first available appointment, which was the next morning.

At no point in this process did any health care practitioner explain anything about what a miscarriage would be like, warning signs, what to do or signs that something has gone wrong. I think like most women I assumed there would be blood, lots of it, and pain. But I had no guidelines aside from that.

My body began the miscarriage on its own at about 5:00 pm that night. By 10:00 pm I was getting concerned that something was going wrong. By midnight I knew that something was really really wrong. We called an ambulance, and I was rushed into Mount Sinai emergency with a hemorrhage. I was very very lucky that I live in downtown Toronto throwing distance from an ambulance disbatch.

Here are the things I wish I had known before my miscarriage:

  • One in five pregnancies ends in miscarriage.
    And, this does not include miscarriages that go unreported because they happen early in the pregnancy or miscarriages that are unnoticed because they happen before the 4 week mark, or miscarriages that are termed chemical pregnancies because they only last a few days and would be completely unnoticed except for women testing early and frequently.
  • A beta HCG test can’t save your pregnancy, but it could give you the choice to have a chemical miscarriage earlier if you know the pregnancy has failed.
  • An early ultrasound can provide the same options as the beta HCG but later in the pregnancy.
  • There is so much that can go wrong between conception and live birth, and it’s not likely your fault if it does go wrong. It just happens, and it happens often.
  • You are not alone. There are so very many women out there who have gone through this. After my miscarriage I heard from so many friends and relatives of stories about their miscarriage(s).
  • A miscarriage is a loss, and there will be a grieving process.

These are the pragmatic elements of miscarriage. More difficult are the emotional elements. Every woman, man, couple will react differently and will experience grief and loss differently.

I found that the grief over my miscarriage, while much different than the intense soul-ripping grief over losing Sean, was difficult to deal with for different reasons. It is an invisible loss that is not socially acceptable to talk about openly with most people. As a result it was easy to feel isolated and alone, and at the same time to feel a lot of pressure to move through it and move on quickly.

Unexpectedly there was the sense of guilt or shame that would invade my thoughts. The frequency and common place of miscarriage was almost completely unknown to me. Growing up the message being shoved at me and my generation was about birth control and not getting pregnant. The concept that a pregnancy could so easily and will so frequently end in miscarriage was never made known.

In this context I felt very let down by my body. I felt like I had failed to achieve some basic human element. That I was somehow defective or incomplete. Without subscribing to the idea that women exist solely to make babies, my inability to carry this pregnancy to term felt, on some level, like I had failed as a woman.

pregnancy and infant loss by Shana Smith

Following the grief and guilt was the fear. Fear that there will never be another opportunity, fear that another pregnancy will mean another miscarriage, fear that the future I thought would be so simple is beyond my reach.

A particularly difficult element for me to deal were the social elements. Well intentioned yet insensitive comments made by friends and family who knew and did not know about the miscarriage, but had not had one themselves.

I am very thankful to have amazing people in my life. I was able to reach out to friends and find support that I didn’t know existed. Women who had been through miscarriage and fertility issues freely and generously shared their experiences to make me feel less lonely, less guilty and less fearful. This was a tremendous help.

Every person is going to work through this proces in their own way, in their own time. For me, perhaps it is the perspective of losing Sean, or of other challenges life has thrown me in the past year. The pain of the miscarriage subsided relatively quickly. The fear is there, but does not rule me. Life will be what it will be and there will be nothing I can do to change that. In the end I am like millions of other women who face the challenges of miscarriage and fertility problems as part of the course of my complex life.

Sean Lotassium Breams

Sean 157Sean Michael McMillen, born February 16, 1982, died March 14, 2012. Thirty years old and twenty-eight days. I miss him with every breath, I feel the pain of his loss in the hollow of my bones, his absence lingers ever present like a phantom limb. If I could trade my life for his I would do it in an instant without second thought, without hesitation. But, I cannot, so instead I remember him and honour him.

A friend told me: “A loss like this is not something you ‘get over’ or ‘get through’. Grief is a process of skills acquisition, you develop the skills to live with it, each and every day.”

Sean was a remarkable person. The world is lessened by his absence, and most of all by his short time here. He was singly the kindest, most compassionate and most intelligent person I have ever had the privilege to know. I have no doubt that had he been able to live to old age he would have become one of the leading philosophical minds of our time.

In the last year I have received letters, emails and phone calls from thousands of people who knew Sean in various capacities. While no one speaks ill of the dead, the compassion and grief expressed by these complete strangers shows the tremendous impact Sean had on the lives of others regardless of the quantity of time he was acquainted with each. Sean had a remarkable ability to connect to people at their core, to value them for who they were as a person, to give each individual a space free from judgement, a gift of peace.

Conference 002_jpgOne of his teachers shared this story:

At the beginning of each term we asked the students to pick a nature name for themselves. For the term at Bronte Creek the students would be known by those names. When we got to Sean he quietly said he picked the name “Lotus”. I wondered if he knew. Did he know the significance? Did he understand what it meant?

Sean kept the name Lotus for years. In fact, many of the people who wrote to me knew him mostly as Lotus from his years spent at The Bronte Creek Project. And, yes. Sean knew the significance. More importantly I believe he did his best to live it.

One of Sean’s close friends asked me if Sean ‘was always this way‘. Meaning was he always this kind, compassionate person? Specifically he asked ‘didn’t he go through that angry-young-man phase?’ As his sister I feel I should have some stories of Sean the nuisance, Sean the brat, Sean the annoying little brother, but I don’t. 

Sean 218Sean was always this way. It’s not that he was complicit or did not experience anger. He was profoundly affected by the injustices he saw in the world. He had a deep sympathy for what Canada has done to our First Nations people, he walked lightly on this earth and modeled that behaviour for others, he believed strongly in individual freedoms and was frustrated by the voices that would limit peoples opportunities based on sex, gender, race, ethnicity or sexual orientation. I remember him saying that although he loved philosophy he did not want to be called a philosopher because it was people who were calling themselves modern day philosophers who were, all too often, spouting hateful philosophies on broadcast channels. So, while he did experience anger it was always placed towards the act or idea or behaviour, and I never saw anger consume his being.

Sean 99The way Sean approached philosophy was from a practical lived perspective. While he loved a good philosophical discussion he did not preach, he showed. Sean had a gift that made people want to follow him. He modled good ideas and good ways to live that felt simple and good to do.

Another friend wrote “Being around Sean made me want to be a better version of myself.”

In the end, this is what I miss most about my brother. He was my inspiration, my raison d’être, my motivation. In life, I never had to go searching for a soul mate because mine was born in my brother. Although he was younger he was my teacher, my mentor, the person who I looked up to the most and the one whose opinion counted above all others.

I have been a year without him. There have been dark moments. Moments when the thought of living without him another hour, another day, feels like an insurmountable obstacle. In those moments the desire to simply cease to exist is stronger than any other single emotion I have ever felt in my life. It is attractive, seductive and feels safe, secure and simple. In those moments it is incredibly difficult to place any value on my own life. And yet, thinking of him in those moments still saves me.

Sean is gone from this world, and I do not believe in a life after death, nor did he. We laid Sean’s body in the ground and we covered it with earth ourselves. The person that is Sean is no more. But, I can still remember him, and that memory brings me pleasure and purpose.

July 2007I remember him when I speak with Alyssa, his partner of seven years. When I hear her soft voice, laugh about his crazy expressive face, and uncover yet another pocket treasure he stole away from a moment in time. In each other we find comfort from a love born out of our shared love and loss of Sean.

The Boys

I remember him when I hear from one of “the boys.” Sean, James, Andrew, Bryce and Devon knew each other since grade one. It’s possible that they spent as much time with each other as they did with their families. They became brothers in a very real sense. When the boys left to go to school all but Devon went out west. Sorting through Sean’s writings (a work in progress) I came across several writings penned by “Breams” a group-hive-mind name combining Bryce, James, and Sean the three who lived together in Victoria BC. Hearing even the small details of their lives provides a continuum for Sean’s life.

Sean -56Most of all I remember Sean in the touch of a spring breeze, in a cold lake, in the smell of mowed grass, lying under a tree in a park, jumping over a fence, climbing the money bars on a children’s playground late at night, chopping onions and garlic, peeling sweet potatoes, having a beer on the deck, when my fingers touch a guitar string, and in the music… so. much. music.

These small ways that he permeates my everyday life are the most important. They are what keeps me alive. What reminds me to search for the good life. To ask the philosophical question: What is a good life? And to engage in the search for that answer with all that remains of me.