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.

Recipe Review: Asian marinated beef spare ribs

I was lucky that when I was diagnosed with celiac disease I had already been on a rather severe elimination diet for about a year. This elimination diet excluded: grains, refined sugars, dairy and soy. For me, the easiest way to survive these restrictions (and ‘easy’ is not a good word here) was to learn the paleo diet.

It’s an odd dietary turn for me as a former vegan. I undeniably feel much better eating what is predominantly a paleo diet. However, I believe this is an individual thing.

Going paleo has not been the easiest thing ever. It’s been particularly hard for my husband who loves all things pasta, cake and sugar. So I was really glad to find some recipes he absolutely loves.

We registered for a slow cooker for out wedding – how traditional of us. Best kitchen appliance ever! If you don’t have one – go get one. It makes cooking super easy and amazingly tasty.

I haven’t cooked a lot of meat in my life, so when I tried this recipe for the first time and the bones literally fell out of the meat as I was taking it out of the slow cooker I was really worried. I don’t think I’ve ever had anything quite so tender in my life.

Except for grating the ginger this recipe is super easy to make. I use wheat-free tamari instead of coconut aminos. It goes great with roasted kale which I do with beats and garlic.

Ingredients

  • 4-6lbs Grass Fed Beef Short Ribs
  • 1 lime, juiced
  • 3 tablespoons Coconut Aminos
  • 2 tablespoons white wine vinegar
  • 1 tablespoon raw honey
  • 1 tablespoon sesame oil
  • 2 teaspoons grated fresh ginger
  • 1 teaspoon siracha (or other hot sauce)
  • 2 teaspoons sesame seeds
  • salt and pepper, to taste

http://paleomg.com/asian-marinated-crockpot-beef-spare-ribs/

Celiac

CeliacBecause, what I needed was another diagnosis.

To be fair at least this diagnosis answers some questions in my life. I enjoy food. I’m food adventurous and might qualify as a foodie if I was inclined to use that term, but I’m not. Unfortunately, I’ve always existed with a certain amount of digestive problems. After 30+ years I had accepted that I was generally going to get mild to moderately and sometimes severely sick after eating.

After Sean passed I did a number on my digestive system by not eating for about two months and then discovering that you can’t simply start eating solid foods again after not having done so for a long time. Initially I was put on a the BRAT diet, and I reacted badly to it. Then I was put on a rather extreme version of an elimination diet which started off as clear liquids and after the first 12-weeks of working my way onto some solid foods basically became a paleo diet.

Paleo-Diet-2I should be very clear here that it was not prescribed as a paleo diet, however when I looked online for recipes that worked for the diet most of the recipes that fit in that category were from paleo blogs.

At the risk of sounding like the next prophet of paleo (which is not my goal), I felt much better on the paleo diet.

I initially decided this was because I was not eating dairy. In the past, even though I knew I had a mild milk allergy you would often hear me say but sometimes cheesecake is worth it! And, so for may years I attributed my digestive upset to cheating on my milk allergy. What always eluded me was why I would sometimes get very very sick after a meal with dairy and sometimes not at all.

Despite being fairly consistent with my new elimination diet I was still getting sick on a relatively frequent basis.

For hardcore paleo people this is where I’ll admit I was still eating things like soy sauce or using gravy because the diet I was put on wasn’t really paleo it was: no grains, no dairy, no soy, no refined sugars, yes vegetables, yes lean meats, yes fruits, yes nuts. I wasn’t really told anything about gluten or label reading at this point.

Food binned

All of the food we had to bin after finding out that I had to read labels for gluten content.

After almost a year on this diet and seeing some improvements but still having some problems I came across the term celiac disease, which was also linked to infertility. I asked my doctor to be tested. She agreed, although she cautioned that I may not have a positive result since the recommendation for Celiac screening is to be tested prior to removing gluten from the diet and my elimination diet would have removed most gluten from my diet.

The good and bad news is I’m definitely Celiac, and a very sensitive Celiac at that.

What is Celiac disease?

Celiac disease is a medical condition in which the absorptive surface of the small intestine is damaged by a substance called gluten. This results in an inability of the body to absorb nutrients: protein, fat, carbohydrates, vitamins and minerals, which are necessary for good health.

Canadian Celiac Association

This explains a lot about my digestive problems over the years. I currently have some limited information based on what my doctor had available, using the Celiac disease sites and speaking to others with the diagnosis. I’ll get more information in July which was the earliest available appointment for a GI specialist.

What are the risks of having Celiac disease?

For a long time I viewed my digestive discomfort as a irritation, but not a serious problem. If left untreated however it can lead to some very serious problems.

In the short term there is the gas, bloating, stomach cramps and pain that I thought was simply ‘normal’ after eating and might be attributed to over eating. The words ‘comfortably full’ were not in my vocabulary.

Eventually you start to do sever damage to you intestinal track and start exhibiting signs of malnutrition, despite consuming the ‘right’ foods and vitamins.

You may also develop auto-immune disorders. It’s important to note that allergies are auto-immune disorders (something I didn’t know until recently).

In the long run you may need to have a portion of your intestines removed, and are at a substantially higher risk for colorectal cancer.

230px-Coeliac_pathWhy did you think you had Celiac disease?

WARNING: Gross factor, if you don’t want to read about disgusting symptoms skip this part and move on to treatment.

One of the barriers to me getting tested for Celiac disease was not wanting to talk to anyone about my digestive problems. I already had established a habit of minimizing my food intolerances socially through things like but sometimes cheesecake is worth it! And, I felt like talking about what was going on with me digestively was definitely (TMI) too much personal information and would make me sound like a hypochondriac.

The first and most prominent sign is that I felt somewhat sick almost every time I ate. I felt my best between meals and when I had not eaten for some time. I almost always planned to be home shortly after dinner since I knew eating out would usually make me sick.

On the mild end there was gas. Lots of it. GasX and the like really didn’t work. It also didn’t seem to be related to beans (yes, I tried beano), and cutting my dairy intake didn’t really resolve the problem.

There’s also bloating and severe cramping. The cramping would sometimes be much worse than even my worst menstrual cramps (sorry guys, I don’t have a better analogy).

In recent years I’d started to get a lot of diarrhea, to the point that i was very worried about having an accident.

Then I started getting the bloody-diarrhea, and that’s when I called the doctor. I guess “blood down there” is my line for when to go to the doctor.

I really wish I had known a lot more about Celiac much earlier on. I wish I knew that it wasn’t normal to feel sick or that gassy, bloated or cramped after a meal. But I didn’t. At least now I know why I had these symptoms.

celiac-dietWhat is the treatment for Celiac disease?

There is no cure for Celiac disease but it can be controlled by a strict adherence to a gluten free diet. As I recently found out this means reading a lot of labels. Things I never expected to have wheat in them do. Like soy sauce, or more surprisingly broth.

Why the fu*k does broth have wheat? This one bothered me for a long time until a friend that’s been very helpful in accommodating this new dietary restriction discovered that wheat is used for colouring in broth. Personally, I’d prefer to have my broth a little less golden yellow and not have to pay the extra $1.50 for gluten-free broth. Yes, yes I can make my own.

What is a Gluten Free Diet?

Avoid the following things:

Nutrition labeling can help. However, nutrition labels do not need to list all of their ingredients, only the major ingredients. For people like me who seem to react to gluten levels that may be below 20 parts per million I’m likely to encounter foods that may have trace amounts of gluten but are not included on the label. If you can find food that are marked as being prepared in a gluten-free facility these would be best.

Does this mean you can now eat rice, corn, soy, beans etc?

This is probably the most common question I get from friends who have been seeing me through this process. The short answer is: not yet.

It’s likely that some of the allergies I’ve developed over the years (pets, milk, pork, maybe soy) are a result of the Celiac disease and may get better with time.

At the moment I need to wait until I am in the care of a GI specialist who can help me with re-introductions to some of the foods that have been excluded. I’m hoping I’ll get many of them back but realize it will be a long process. They will likely need to be introduced one at a time with wait periods in between. They were also excluded because they’re considered “hard to digest” foods so I may have trouble re-introducing them.

So, what can you eat?

Again, without sounding like an add for the paleo diet, almost everything paleo has worked out for me.

Here are some recipe blogs I love:
Everyday Paleo
Paleo OMG
NomNomPaleo

I’ve had some suggestions to return to a vegetarian / vegan diet. I will be the first to admit that when I did try to eat vegetarian / vegan for the better part of my life, I did it mostly wrong. I was more of a starch-a-tarian than a vegetarian. That being said, I find the heavy reliance on soy (which I don’t seem to react well to) and many grains including wheat to be difficult for me to navigate around. Although not impossible it’s just a lot more work to modify recipes.

Here is one great vegan-celiac blog I like ( recommend subscribing by RSS because the blog itself is sorta weird to navigate):

vegiac

What’s next?

Hopefully this is it for medical curve balls this year. I’m glad I have a diagnosis and I’m learning to navigate a gluten-free lifestyle. I’m looking forward to getting a doctor that will hopefully have more information on Celiac disease and help me with the re-introduction of some foods.

Contemplating IVF

adoption

The journey to adding a child to our family has not been an easy one. Our original plan was adoption. We wanted to adopt a child, or siblings, five years of age or older with special needs. The process quickly got complicated.

The short version is that our adoption process was stalled indefinitely when five minutes into our first visit with the social worker she decided that in order for us to adopt I should sign up for life-long counselling because of a medical history that included a rape that happened 17 years ago. I was shocked, appalled and frustrated. You can read about that here. Not because I have anything against counselling but because of the judgement that this decision made about rape victims’ (1 in 4 women) capacity to be parents. We fought on for some time and tried to get CAS to clarify what type of counselling they would accept (psychiatric, psychologist or counsellor) and to this day we are still waiting for a response to that question. We could have pressed harder, we could have followed up more. But, we didn’t. We got tired and frustrated. We gave up.

The backup plan to adoption was simply – ha! – to have a baby ourselves. My mother had me and my brother later in life, there was no indication of any problems on either side, so we never thought this would be a problem.

Infertility was a subject that was as foreign to us as miscarriage (as discussed earlier).

IVF 242Perhaps another theme of this blog is taboo subjects. Infertility certainly falls into that category. The lack of discussion on infertility baffles me. I have learned more in the past year about the human reproductive systems than I have in my entire life. And, none of it is, difficult for a 14-year-old girl (or boy) to grasp. Why we are not taught these things as part of sex education is beyond me.

The whole infertility subject lies in a black box. Women and couples who are dealing with infertility are relegated to special doctors, clinics, online forums and Dr. Google. Dealing with infertility is scramble to try to find some – any! – reliable, publicly accessible information. Knowledge seems to be firewalled behind medical institutions and, as a patient, you simply cross your fingers and hope that your doctor is up to speed on all the advancements and treatments.

There is also isolation. Suddenly a feeling of being alone. You can’t simply look at another woman or couple to know if they may have had a similar experience and might be able to offer some guidance or advice.

Our journey from infertility diagnosis to contemplating In Vitro Fertilization (IVF) was thankfully a short one. I say this because I now know that many women and couples face a much longer road.

ivf-fertilizedOur first pregnancy was assisted by Clomid and we were successful on the first round. Unfortunately that pregnancy miscarried and the miscarriage follow-up tests showed that I had cancer and a bilateral tubal blockage. This means that both fallopian tubes are closed making it physically impossible for my body to transport an egg through the tube to the uterus to be fertilized.

The silver lining in all of this is that a complete bilateral tubal blockage is one of very few situations where the Government of Ontario will pay for IVF.

Deciding on IVF has been difficult. If the government did not offer coverage for IVF then my answer would be a simple no. This would be based on a financial decision. After blood tests, hormone tests, lab fees, sperme and egg storage and the IVF procedure itself most couples in Ontario are facing somewhere between $15,000 – $20,000 per IVF cycle. And, that’s before the medications. That’s simply not a financial reality for me.

public_funding_ivfHowever, the government does pay for it. I feel like not taking the opportunity is a slap in the face to couples who would give almost anything to be in my position. Not to mention the people who worked very hard to convince the government to cover IVF (in some limited cases, so far). It also falls under the regret the things you do, not the things you do not do category. In a way I’ve won the IVF lottery and walking away from that feels senseless.

One question I’ve been asked a few times is: how will IVF treatments affect the cancer. I have a team of doctors at Mout Sinai and at Princess Margaret. The agreed consensus is that cancer treatments would seriously diminish my chances of successful IVF procedures. While IVF treatments may post a slight risk to cancer, but are not considered serious.

More difficult, and I hate to admit that I am influenced by this, is the social stigma. I have been told by many friends that they would simply never do IVF. In all cases these are women who have never had to make the choice between: do IVF or do not have a child.

Infertility AwarenessHearing these statements is difficult. It’s difficult because I know they are said from a place of caring. I assume the person saying them is trying to comfort and connect with me about this difficult decision. But, I don’t think it’s a statement that anyone who is not themselves faced with the choice can make. I certainly didn’t think about IVF until it became a choice between trying IVF or not having a child. I don’t think anyone comes to IVF without facing that choice. IVF is a measure of last resort and you have no idea what your measure of last resort is until you look it in the face.

It’s also difficult to hear because in many ways I think choosing IVF or any other fertility treatment should have no more social stigma to it than choosing to go off birth control or to not wear a condom.

poster_knocked-up-3Perhaps the most infuriating thing I hear women say is It’s always the ones who aren’t trying who get pregnant. Why, is it more socially acceptable to seemingly get pregnant by ‘accident’ than to make an informed and eyes-wide-open mutual decision to have a child?

These statements reflect a bizzarre social norm where when a woman pursues fertility treatments she is crossing a line and using science to do what her body cannot, and this is bad, taboo and stigmatized. But,  at the same time unplanned and surprise pregnancies are socially acceptable and celebrated to the point that they make up several mainstream blockbuster movies. It all feels very Kafkaesque.

I’m sure there is a feminist thesis in here about our social valuing of women being able to control their reproductive rights. But, I will leave that for another time.

Today, I acknowledge my internal conflict over the offer of funded IVF treatments. I acknowledge the tremendous amount of work that has been done by scientists, doctors, women before me, advocates and policy makers to allow me this choice. I don’t take this choice lightly. I will likely try at least one IVF treatment, because in the end I want to know I used all the options available to me. I am in a place where I can accept they may not work, but cannot accept that I did not try.

My Daffodil Day

Daffodil I want you to know you are not aloneEach year the Canadian Cancer Society creates awareness about the fight against cancer by selling daffodils. In previous years they were live flowers you could get cut or with a bulb so that you could plant them. Now, they are pins.

This year, we got an all-staff email asking us to help out by selling the daffodil pins in subway stations. Normally this is the sort of thing I’d avoid like the plague. It’s very public, and it’s selling stuff. These are two things I don’t do. However, I decided to participate, and I’m very glad I did. It was an amazing opportunity to put myself out there and engage with total strangers for a cause I believe in.

I got the Dundas subway station which is freezing at 7:00 am. Partnered up with another staff member I took the northbound trains, he the south.

To date, I’ve been an observer to the subway fundraising. I’ve seen the United Way Pizza Day and the Lunch Money Drive from Second Harvest and I’ve given and I’ve not given.

Daffodil volunteerStanding out there with my little daffodil box  did feel a bit ridiculous. But, I figured if I was going to do this, I was going to do it all the way. So for the next two hours, every time a train stopped and the doors opened, I shouted: Good Morning! April is Cancer Awareness Month! Show your support for the fight against cancer! Support cancer research / support free programs for patients. Sometimes I changed it up and called out some of the programs or asked people to get this season’s best fashion accessory. There wasn’t really one particular line that seemed to work better than another.

Most people avoided me. I noticed most people look down and to the left as they tried to avoid me. Some people gave me truly angry stares as I stood in their path with a daffodil. But ultimately they decided to avoid me, and not engage.

Women were ten times more likely (at least) to donate and take a daffodil than men.

There was no pattern in income. People from all walks of life, from all nationalities, gave.

I had recently watched Amy Palmer’s The Power of Asking TED Talk, and so, I made it a point to hold out a daffodil, not aggressively, just slightly and to look people in the eye.

I wear it for my motherThe most rewarding and most humbling experiences were the people who did stop to donate and take a daffodil. Some just donated, but many stopped to tell me their story. One woman told me how her father was currently fighting cancer and how scared she was, how much stress, how much unknown, how helpless she felt. She had tears in her eyes and I did too by the time she let me give her the daffodil.

People told me about their diagnosis, about their fear, about their mothers, fathers, sisters, brothers and children who had fought cancer. Some survived, others did not.

In the short two hours I was out there asking people to donate money and wear a pin I was able to connect with people, complete strangers, in a very authentic way. As I looked directly at them, in their eyes, they engaged. They paused at the beginning of their very hectic day and shared things that were deeply personal with a me, a complete stranger. Afterwards I would thank them and everyone of them returned the thanks not in that off hand way that we so often do, but in a genuine – look me right in the eyes and let me know this brief moment we shared meant something to them.

I understand that standing on a subway platform selling daffodil pins for pocket change and small bills is pretty much the least I can do in the fight against cancer. But, it was an incredible experience and reminder that almost everyone out there is touched, in some way, by this disease and there is tremendous hope that cancer outcomes can be improved and lives will be saved and treatments will get better.

Family Caregiver Day

Full disclosure: I’m a staff member at the Canadian Cancer Society. They are not paying me to write this post. The opinions expressed in this post are my own.

The Big C

daffodilI seem to have fallen into a pattern alternating sad and happy posts on this blog. I promise this won’t continue indefinitely.

The complex reality is that a lot of sad things have happened this past year and those things have heavily influenced the way I now view and navigate the world. Living these experiences has changed me, and my life, but not in ways that I would have expected. If anything there is now more meaning and more value and more beauty.

There is no easy introduction to this subject: I have the cancer.*

This is the part where I pause, you look concerned and we both feel awkward and don’t know what to say.

cancer particlesI’ve discovered there’s a coming out process with cancer. You can’t simply drop the c-bomb on someone. Although, I have inadvertently done that with a few people I mistakenly thought were in the know. And now, for some, this blog will be the c-bomb (sorry). My coming out process usually involves a thought out piece of writing or a coffee date. I hope if you are finding out via this blog that you will consider this the former in lieu of the latter.

There’s also no good way to tell someone. Eventually you just blurt it out, and they look awkward and shocked and there’s that moment of awkward silence as you both stare past each other trying to think of something to say.

This is the part where I tell you not to worry. In my case it is not serious. In fact, I’m very very lucky. I have stage one ovarian cancer. I’m lucky because while ovarian cancer has a high mortality rate that is because it is not usually discovered until it is stage three or four.

General image not sex cord stromal

General image not sex cord stromal

In my case it was discovered early as part of a series of tests that were trying to discover why I was having fertility issues. It looks like an early stage of sex cord stromal type, which is good because it’s not epithelial – which is not so good. Also good news, after a battery of diagnostic tests including: blood tests, CT, tumor marker tests, more ultrasounds than I care to think about, and some minor surgical staging tests it has continued to be a stage one diagnosis.

Now we’re both feeling a bit more relieved we find ourselves at another awkward pause while you’re not sure if you should ask about what happens next. Am I going to lose my hair? Spend huge amounts of time in hospital? Be in agony with chemotherapy? No. Probably not.

histologyThe primary treatment for ovarian cancer is surgery. With stage 1 cancer of this type it’s not recommended to move to surgery too fast. At first this seemed counter intuitive. My reaction: WTF it’s cancer, get it out! However, in stage one the cancer cells are still converging into a tumor. So long as the histological grade of the tumor remains low, meaning it’s not affecting the tissue around it, it’s better to wait a bit until there is a clear pattern to the tumor formation. If surgery is done too soon there is a 40% chance of remission. Surgeries done a bit later have more success.

There are other ‘complicating’ factors for me like that small issue of wanting to try to have a child. I have a better chance of conception before any surgery is preformed.

Ironically, while the cancer is the thing that seems to freak people out the most when I let them know what has been going on with me this past year, so far it has the least impact on my day-to-day life. That will change. But not soon.

Next steps for me include more tests. Always. More. Tests. Making decisions around family planning. Then exploring cancer treatment options.

There will be some tough decisions ahead. Cancer treatment, even in Ontario, even with benefits is expensive. The average cost per course of cancer drugs is now over $75,000, and over half of the newer cancer drugs cost more than $20,000 per year. The reality for most cancer patients is that care decisions are balanced with financial decisions. I am one of the lucky ones, I have reasonable coverage, chemotherapy is not likely to be terribly onerous for me and does not seem to have a strong statistical variation on my five year survival rate. Overall, I’m early stage and my prognosis is extremely good.

Some amazing people have offered some financial support. At this point my recommendation is to donate to the Canadian Cancer Society or another well-recognized cancer charity.

*Note on pronunciation: “cancer” must be proceeded by “the”, “cancer” should be pronounced Kaaaann-Tzarrrrr preferably with a heavily nasal tone.

The links I’ve provided in this post are from the Canadian Cancer Society.

Full disclosure: I currently work for the Canadian Cancer Society.

The views expressed on this blog and on my social media channels are mine and mine alone and do not reflect those of my employer.

CanadianCancerSocietyLogoThe Society is a national, charitable, volunteer based organization whose mission is the eradication of cancer and the enhancement of the quality of life of those living with cancer.

It’s an amazing organization. We raise money for research. Last year alone we invested $45 million in research. And, it has paid off. The Society was founded 75 years ago and at that time about 25% of people would survive their cancer diagnosis. Today, 60% will survive. That’s incredible! I’m fortunate to be in that 60%. Early detection saves many lives.

Beyond research one of the biggest benefits the Society has, for everyone – not just employees, are our community services. Including education workers, Smokers’ Helpline, advocacy (this is what I do), transportation programs and more. The most useful service for me going through this experience has been their Cancer Information Service where I can find all kinds of information on my cancer, diagnosis, treatment, prognosis, supports and more.