I was first diagnosed in 2010 at the age of 29 with Stage IIIB triple negative breast cancer (TNBC), recurrence in 2015, Stage IV TNBC in ribs and lung. I have been married to my loving husband since 2008, and we live in Nova Scotia with our three children. I have nerve damage that prevents me from working, but still try to keep up on my art (drawing, painting, writing, and more).
Further links or information:
Julie Michaud Artwork
Young Adult Cancer Community Profile
Whenever someone starts asking what's going on or asks what the story is,
there is a look of sheer shock and terror in their face as you explain what's happening.
If my past self could see my new self, I would be curious as to how I'm mentally able to cope with all this.
When you look back at what you were capable of before and what you're capable of now, and all the limitations let alone the possibility of imminent mortality it's a lot to take in. It's especially hard to take in at first.
The oncologist never gave me any stats on life expectancy.
It basically came to me looking up some of the typical stats. Even then, they are American ones. There are very little Canadian studies. I like to know what I'm up against. I understand that statistics are the past. They are not my future, but they are a representation of what people have dealt with so I can kind of get my head around questions such as "Is it more likely that I have a couple years or a couple months?." The stats I found was that the average life expectancy for Stage IV breast cancer was 33 months. That made sense to me because I had friends who were diagnosed and only lived a month or two afterward, and then others who were alive 7 years later. I have seen both sides of the coin. That is with me when I think of myself.
One thing I really miss is nose hair because my nose runs all the time now.
People don't realize that when you lose your hair, you normally lose all your hair and that's why your nose is running 24/7.
My reconstruction surgery was important to give me a slight sense of normalcy when I looked in the mirror.
I wanted to have just that slight bit of normalcy and control in my life. That's all it was. After the reconstruction failed, my husband continues to say that it's for me to decide (about more reconstruction) and he supports me. For me, I want to go back to how I was before. It's also about being able to do small but essential things like wearing a shirt, without having one large side and one flat side, which stretches out my clothes and wears them down on one side but not the other.
When it came to appearance, my hair used to be one of my big identifiers.
I always had long hair. It was even down to my belt the first time I lost my hair, and down to my bra line the second time. It would be great to have normalcy with that too. I have silly wigs now, electric blue, cotton candy pink... They are more for me to have fun with so if I wanted to I could wear one. You get so used to simple things like hair, and then suddenly it’s gone.
If my past self could see my new self, I would be curious as to how I'm mentally able to cope with all this.
When you look back at what you were capable of before and what you're capable of now, and all the limitations, let alone the possibility of imminent mortality, it's a lot to take in. It's especially hard to take in at first.
A good friend is someone who listens,
and who understands that cancer is and will always be part of my life now.
Sometimes it's the last person you ever thought would leave you, someone you thought had your back no matter what,
and all of a sudden they are cutting you out, they are laying blame on you, engage in shaming and things like that. For some people it's defense, they are scared of cancer, scared of death, and they pull away from anything and everything about it even though they know it's not contagious. It's total self-preservation - when you hear something bad or something dangerous you pull away from it. Other people are assholes and you don't find out until push comes to shove. I've seen friends who have lost their spouses and significant others. When you start delving into it you find out that they weren't in the best of places before, and cancer was that extra wedge that led them to separate. And then you turn around and there are some people you hadn't previously thought of very often, and they show up with casseroles at the door, watch the kids so you can nap, drive you to appointments, or check in with you to see how you are doing and offer to take you out for a treat if you need it.
I'm part of a couple of Facebook groups, some of them are for metastatic patients,
some of them are for young adults that have breast cancer, some of them are for parents who have cancer. None of them are directly relevant to my exact situation as a stage-four breast cancer young adult with children, but I have a variety of online groups to draw from.
We're a military family.
I think that kind of helps us, because we know how to treasure the time we do have together because my husband can often be gone for a while if he has to go overseas, as opposed to a couple who knows they will be able to see each other every day. The fact of the matter is that we both love being with each other. We are best friends that are married. We do so many things together. We go to conventions together, and when we go to conventions together we dress up together. Last year we were Centaurs. This year we are hoping to go as characters from a webcomic that we read.
We're a family that has little kids at home, so it's a lot to take in at first.
You want to and expect to be able to raise your children and all of a sudden you may not get to raise them, and you have to get used to the fact that somebody else might be raising your kids after you go. Depending on how things are, it could even be somebody you've never met before. So it gives you a bit of fear. You want to see your children grow up and you always have an idea in your head of the kind of future adults you'd like to shape and mould. There are things that you want for your children, things you want to teach them, freedoms you want to give them. Or freedom you wished you had in your childhood that you want to bestow onto your children. And then somebody else might have a different idea of how they are going to help raise your children, what they should become, or what they should do. You are thinking one way, and then realizing "this can all change."
My life expectancy was 33 months.
When I heard that, I started calculating what the state of my life would be if I made it that far. It would be that my daughter would not have started school yet, my youngest would not have had his third birthday yet, and my oldest would not have even approached junior high. It was slightly depressing to think about, but at the same time, I'm trying to be realistic about it. Not everybody gets a long life, and everything can change at the drop of a hat. As I kept having good responses with chemo, I knew I had a good chance of beating the odds, and I have because my son is now 3 years old. He's over 36 months, which means I'm past 33 months!
For me, a good oncologist is someone who gives me full disclosure about what's going on.
I want to know exactly what the risks are versus the benefits. I want to know that I can trust what they say. I want to know that they will listen to me; that they will actually hear me out when I have questions about something. I want them to pay attention, and I want to to be able to tell that they are actually paying attention and not thinking about something else.
Daily life is a bit rough.
Even before the cancer, I was having a bit of an adjustment period because my back actually quite limits me. Sometimes the chemo can make things a bit easier or a little bit worse depending on how it affects my body and what pain meds I'm on. I get tired really easily because of the chemo so that inhibits how much I can play with my kids, how much I can do around the house, and sometimes I'm just tired and want to go to bed. At the same time, I want to stay up and watch a movie with my husband, or I want to take the kids out to the park. It becomes very limiting, and you have to start rationing your energy throughout the day.
Cancer is your life now.
You have an entourage of doctors who follow you, you have medications you are constantly taking. You are living with pain constantly, and in some ways, it's like living with a chronic illness. It's not like a cold when you can eventually say "Ah, I'm glad that's over." Every morning I wake up and have pain, not only in my ribs but also in my chest. I have spasms of pain throughout the day, and it can be hard to even go out. When I'm on my chemo, I'm exhausted. I crash after supper often and my husband puts the children to bed. And that becomes our new normal.
When it comes to goals, I try to be realistic and I try to do short-term goals.
An average person might have a five or a ten-year plan on the go, even though there is no guarantee that they will be there in that 5 or 10 years. It's more realistic though for them than for me, because there's less complications that can arise. With me, I would like to be here in 5 years and I joke with my friends that when we're older we'll all get a house and cats and all be crazy together. My husband and I reached our 10 year wedding anniversary, and that was one goal I really wanted to reach.
We plan things that are short-term, like going to a sci-fi convention that's coming up in a couple months or getting ready for Christmas.
This week, for example, I had a goal of cleaning one part of the house. Sometimes goals like that happen, and sometimes they don't happen. You have to be lenient with yourself and think that even if it doesn't get done, at least you tried. On some days, a significant achievement for me is that I got the dishes complete or that the floor has been swept.
As young adults, we like to go out
but we don't often have money to do so, so I fundraised for us (my support group) to be able to hop on a bus one night and go out to sing Karaoke together. This is the type of work that I can do now, and it brings me joy.
My husband and I talk about everything together.
When it comes down to it, it is my decision in the end as to what I do. But we can talk out exactly what the result means from what our GP says. Our GP only has a basic understanding of what the scan results are saying but can at least tell us if they saw any significant growth. Just being able to start thinking about what strategies we might go with next, whether it's chemo pills, more IV-chemo, or even more radiation. [At this point I've reached the safety limit for radiation therapy for my chest wall, so any more radiation to my ribs would be for palliative purposes, as a way to control excruciating pain].
My husband and I have talked about it and we've talked about who we want to take care of our children if both of us go.
I've already also mentioned to my husband that if I go I want him to start dating again. We've had those kinds of talks. My father also has a plot of land for cremation if we wanted to do that, but it hasn't been top of mind. I guess there’s still been some sort of denial. It's something that should be discussed because I don't want it all laid on my husband after I'm gone. At the same time, it's not something that we are discussing in detail all the time. There are still a few small things that we need to talk about.
I have a box of cards for all occasions for my children.
There's about 36 in there. Once I start to get some bad news, it's there. That's my saving grace. I'm going to start filling them up. There's going to be birthday cards, anniversary cards, Christmas cards, everything. Originally, I went through the whole panic of "I'm not going to be here" because my cancer is highly aggressive. I wasn't expecting it to lay dormant for a year and a half, but when it comes down to it, I had put some stuff aside for each of the kids. Now that I'm stable, I've told myself that I'm not going to get into that until I get sicker.
My husband has been completely empathetic and understanding.
He's never once tried to force anything upon me or anything like that. He's never talked down to me about my desires or lowered abilities. We've always been able to talk about the issues normally. I'm one of the few young adults with cancer, apparently, that still has a sex-drive going, so I do still want to have sex quite often, but my body is sometimes unable. I also still have my period. I was hoping I'd be rid of that thing, but it's still there. The good thing about it is that I have it on time. I still have lingerie and I wear it when I want to and I try going out a couple times. With us, even just cuddling on the couch, it's great that we can do that together. We can work together on a lot of it. For example, when I was having issues with pain from vaginismus, he never rushed me on any of it. I went to the doctor and talked about it with them, about the issues and they helped me come with up with solutions.