I was 26 when I was diagnosed, and like lots of people that age, I was still trying to figure out who I was.

I see on websites and hear professionals say that when you are diagnosed with cancer, you need to find your “new normal” or “you have to redefine yourself.” I just keep thinking and saying how crazy that is when you are diagnosed so young – hell, we haven’t had a chance to figure out who we are, period. How do we re-define ourselves before we had a chance to define ourselves even a first time?

I'm three decades away from the age most people are when they are diagnosed, and I was 8 years too old to be considered pediatric.

People just can’t comprehend it. It's like "Wait, you shouldn't have cancer." It doesn’t compute. It just doesn't make sense.

The first time I was diagnosed, I made a conscious decision to stop letting cancer define me.

I learned how to take control and make cancer a part of me, as opposed to all of me. But it’s different now that I have terminal cancer. I feel like I have lost all sight of who I am because, at this stage, cancer touches every part of my life and has changed everything. It has control over my mobility, sexuality, spirituality, relationships, and finances. When I meet people, it’s so hard to answer the usual questions that I end up lying. I tell them what I used to do for work, or I answer “no, we haven’t had kids yet,” as if that is our choice. If I don’t lie, then everything ends up being 100% about the cancer.

Cancer has control of my death, but I don’t want it to control my life.

I don't want it to define me, but I’m not sure if that's even possible. Cancer is making all the important decisions for us. It has decided we can’t have children and that I can’t work. It changes how well I sleep, what I eat, what events I go to, my relationships with my family. It has changed everything about everything. I can’t distinguish between me and the cancer. Honestly, right now, I don’t know where cancer ends, and I begin.

When I look at myself, I see an extra 50 pounds that I have gained due to treatment, and inactivity due to feeling ill, fractures and general fatigue.

I see extra hair on my face from being in menopause by my late 20s. I see crooked teeth from the cancer in my jaw. I see scars. I see a face that looks like it's middle-aged even though I am only 33. I use a cane to help with mobility. I see bruises from medication that thins my blood...

I have seen lots of AYAs with cancer who are angry, and with good reason.

I have many friends who are angry about my diagnosis, but it’s not one of the feelings I hit on very often. I think for me, anger is such a wasted emotion. Whether I get angry about it or not, it's not going to change my diagnosis. It's something that just happened to me. I feel a lot of other emotions, but anger is just not one of them. It’s like being angry would be even more draining, and it’s already so draining to have cancer. If there was an outlet for the anger, maybe I would feel differently. But there is no one to blame, no one to specifically aim the anger toward. There’s no accountability to be assigned to someone. Cancer doesn’t discriminate. It’s just so random. It just happened.

What my husband and I do have, is a lot of sadness.

We laugh our way through just about everything – probably to save us from crying. But for us, it's just better to laugh than be angry and be fighting. It’s not easy, but it’s a conscious decision and choice for us.

The anniversary of the day I was diagnosed, March 11, is tough for me.

This year was 7 years. I absolutely hate that day. It's a day that nobody recognizes. It's not like I get many texts from people acknowledging it on that day. A few people know about it, but very few. It's a day I want to just get through. Near the end of 2017, I figured out that I didn’t want to deal with that day the same way that I've dealt with it for the last 6 years. I wanted to do something different. I'm always talking about how lucky I am in my life. I have so much, despite the Stage IV cancer. I really do have this amazing blessed life. So, I thought “I'm going to do 100 days of gratitude”. I counted back from March 11 and figured out that if I started on December 2nd, that would be 100 days out from March 11.  I decided to start a Youtube channel, and I decided to do a video every day about something different that I'm grateful for in my life because I knew that would not be difficult. I knew I could easily come up with 100 different things. Every day I did a 5 to 10-minute video of something that I'm grateful for. It picked up a little steam, a few reporters found out about it, and there were stories written about it. I had a bit of a following. As time went by, I thought, “Hey, I kind of like this.”  Then March 11th came and my 100th day was about my husband, and again that picked up a lot of kind of steam and March 11th was a lot easier to deal with. It totally worked. It did its job. What I wasn't prepared for was this immense amount of gratitude that I just had for life and that I REALLY realized that it's not about how much time we have. It's about how that time is spent. Quality over quantity. I just took a deep breath and thought, “Wow, that was a way bigger project than I had anticipated.” The effects of it were massive. And then I found out that the clinical trial treatment that I had been stable on for two and a half years stopped working. I went on another trial. My cancer progressed even more. Now I'm back on chemo. What I didn't know was that on March 12th, my friends and family got together and started 100 days of Katie. They had connected with each other without me knowing. There were 100 different videos about how people were grateful for me, and what they were grateful for in their life. It was just so contagious that every day I got a new video from somebody in my life. That knocked my socks off! And then in the middle of that, it was my 34th birthday. Birthdays are such a massively big deal for me. I wasn't sure I was going to make my 32nd birthday and now we're at my 34th. So I decided to do another 100 days, to end on my birthday. This time it’s going to be 100 random acts of kindness. So many people have done so much for me. I knew I was going into chemo and I wanted to remind myself every day what amazing people I have in my life. And I wanted it to be a part of my legacy. Anybody who has a friend with cancer and doesn’t know what to do will now have 100 videos and 100 things that people have done for me that they can now reference and do for their friends. I'm on day 88 today of 100 things that people have done for me. I could come up with 1000 things.

I think my biggest coping strategy is to try to release some of that trash talk that we are all so good at.

Cognitive Behavioural Therapy (CBT) has really helped me. When I'm being really hard on myself and talking that horrible self-talk, I imagine picking up the phone and calling one of my girlfriends. If she told me how she was feeling and what she was going through, I wouldn't shit on her. I wouldn’t say, "You should be walking more, and who cares if you have two fractures in your pelvis," and "Get those teeth fixed" and all the terrible things that I would be saying to myself. I would say, "You have Stage IV cancer. Your body is doing everything in its power to try to heal itself, to try to deal with the treatments, to try to handle the cancer. You woke up and got out of bed today. That is a victory.” I imagine myself being with one of the many people in my life and having them talk me “off the ledge” by reminding me of how crazy my life is, and that these physical things are a side effect of this bullshit that I'm going through.

I am not “brave” for having cancer.

I'm just trying not to die. Odds are good you would do the same thing.

I made it very clear in the beginning that I am not in a fight with cancer.

I won't lose any battles, and I'm not a warrior. People who are living with advanced cancer are so fucking tired of listening to this garbage. It puts so much pressure on us when we have no control over it. If cancer was a battle, I would have won by now. I have cancer. Treatment either works, or it doesn't. I already carry so much guilt around about having cancer being the reason my young husband will be a widower and my parents will bury their youngest, and my friends will have this needless experience of grief. The thought that it is from “not fighting hard enough” is just too much to handle.

I didn't ask to get cancer.

I want the treatment to work more than anything, but the cancer cells dividing in my body right now are not saying to themselves, “She’s a warrior, so we'd better slow down.” It makes zero sense. I am such a positive person and I do absolutely everything I can. If I am supposed to do X, Y, and Z, I'll do X, Y, and Z and A, B, C to try to prevent the cancer from spreading. I will do absolutely everything not to die! I'm still not “fighting” cancer. The treatment either works or it doesn't.

People keep saying “You look good!”

I feel very sick on the inside, regardless of how you think I look on the outside. Just because you don't think I look sick, doesn't mean I'm not.

Luckily, I have friends who say things to me,

like "You brushed your teeth today? Have a little party for yourself! That's a really big day!"

I'm the youngest of three, and I am definitely the baby of the family!

It’s hard to give parents bad news. As we grow up, our parents shield us from the information and situations that they perceive we can't handle. I find that I am shielding my parents from my metastatic cancer diagnosis in the same way. My parents aren’t able to come to many appointments because they live hours away. They’re relatively young too. They are not at retirement age. That gives me a little bit of control over when and how much information I want to tell them. I don't keep anything from them, but in the same way that they protected me when I was a child, I find I try to protect them from every detail of their "baby's" terminal cancer.

I think my parents are still hopeful for a cure.

It’s very hard for my parents to talk about. Their youngest is dying. When I want to talk to them about dying and death, there is a lot of awkward silence.

My husband is part of every decision that we make.

And it’s incredible how often and how many decisions we have to make. Every week it's a new "Do you want to go this route or this route?” Or, “This hasn't happened so we have to guess this is going to happen, and take this step." And I do not make a decision without him. And not because I don't trust myself. I often say "our diagnosis," "we have cancer,” "we have appointments tomorrow." It’s always “we” and “us” and “our.”

Talking about it makes it real.

This is actually happening. It was incredibly hard, but I'm happy we talked about the “what ifs” and “whens”. And my husband is too, but I think we're probably the only two who have really accepted that I will die of this. When there isn't that acceptance of what’s really happening, it’s really tough. What my husband and I do have, is a lot of sadness. We laugh our way through just about everything – probably to save us from crying. But for us, it's just better to laugh than be angry and be fighting. It’s not easy, but it’s a conscious decision and choice for us.

I had a doctor's appointment today for cannabinoids and she said, "How have you been feeling?"

It was a doctor I had never spoken to before. And I said, "Well, I have Stage IV cancer, I have a blood clot, I just had a blood transfusion, I'm on metabolic chemo." And she said, "Oh! You look good!" I get that all the time. I want people to understand that I might look good, but I feel like shit. And now they’re making me feel like I have to justify that I have cancer. I know it doesn't make sense to them, but it's the reality.

I need support from people.

If you are afraid of saying the wrong thing, tell me that. Saying nothing is not the right thing to do. I have enough obstacles in my life right now, I can't manage you turning away from me too. Never say, "If you need anything, let me know." Instead say, "What can I do for you?" Don’t leave it up to the person who is sick to have to reach out to you if they need help. Think about your strengths and offer that. If you're a massage therapist, offer a massage. If you can clean a house, offer to clean a bathroom. If you can price match, offer to save someone $20 on groceries. If you can drive, offer to drive to the hospital. Offer to pay for a prescription. Any of these things. Speak to your strengths and work from there. That is what’s going to be most helpful. The practical things that have helped me are when people say, "I'm at the grocery store, do you need anything?" The amount of energy that it takes me now to get into the car, drive to the grocery store, grocery shop, and drive back home is overwhelming. It’s a huge day for me. If somebody says,"What do you need?" and I rhyme off three things, it's so helpful. I've had friends stay for the weekend and then clean my toilets. It’s hard. It's so hard accepting that help. It’s impossible to ask for the help but when the help is just offered, it makes it easier. I don't want to need somebody to clean my toilets, but I do need it. I do need the help. After my surgery, my mom was in my kitchen on her hands and knees scrubbing my floors. I've had people prepay for reflexology appointments, which I find very helpful. Because of my fractures in my hips, I could not sleep, and I've had somebody get me a mattress foam topper to make my bed more comfortable. Flowers are incredible and when people buy nice things for me, that's lovely too. But I would take the practical stuff over and over and over again. Help with the things I'm going to have to do regardless. Anything that just helps me day to day. If they can cross that off my plate for me, that is such a huge help.

My husband has a good job and I'm lucky enough to have long-term disability support.

Thank goodness! But the reality is that we still aren't anywhere near where we were prior to my cancer diagnosis. My first diagnosis was 18 months after I had graduated from my third University degree. We found out I had terminal cancer nine days before our wedding, and ten months after we bought our first house. We don’t have any nest egg or savings. I don't know how we haven't lost everything. I'm still not sure how we keep our heads above water. We have tens of thousands of dollars in student loans and had the costs of a 160 guest wedding that had already been planned. Not always, but typically in a relationship, there is that one person who does the budgeting and the financing, and paying the bills. They can tell you exactly how much hydro was last month. I am definitely that person. The only reason we're in this house is because I know where every cent goes. I have always been pretty good with money, but not to the extent I am now. Now I am a “price matcher,” a “couponer,” a “budgeter.” I belong to savings groups online. I keep track of everything! My husband gives me every single receipt that he has, and I’m pretty sure he gets teased for it. Sometimes we both get made fun of because I'll find the best price for whatever. But we have to. We don't have much of a choice. I know we are one of the lucky ones because we have one and a half incomes. I don’t know what people who are single do. If I didn’t have my husband, or if he didn’t have a decent job, I think it would have meant moving back in with my parents. And then there’s this other weird pressure. If you know you only have so long to live, what do you want to do with the time you have left? Let’s say for me, it's a year. Now there’s this expectation to answer the question, "What would you do if you only had a year to live?" - "Oh, I would travel the world!" But with what money!? There's this added pressure of “bucket lists” and concerts to go and see, and all this traveling, but the financial barriers are so high. This is especially true when you're young and you don't have any savings. It’s impossible to do all these things. We’re trying to balance that too, and it’s getting increasingly difficult. I’d like to say that the finances aren’t a big stress in our relationship, but I think finances are often a stress in a relationship even when someone doesn’t have cancer. I hold us to such a tight budget, and kind of control everything so much, I take on a lot of the stress. I worry about how he is going to do all this when I’m gone. Right now he knows that I know exactly where every dollar is and at some point, I can say, "Okay, we can't spend more than this before your payday." He doesn't know that stuff, so it’s not so much a strain on us, as it is on me.

I will never not be hopeful for a cure but I'm also the one who goes to the hospital three times a week right now.

I have to balance hope with reality a lot more than anybody else, except my husband.

I had to initiate end-of-life discussions with my healthcare providers.

When I said to my oncologist, "I want to talk about DNRs and palliative and hospice care," she said "We’re not there yet." I said, "Well, I still want to talk about it." My palliative doctor was very supportive and said, "This is the time to do it. When you're not at the point of needing hospice, this is the time to have the conversation, when you're clear-headed. These are the times to make these decisions." Every time I've heard a professional tell me that this was a good idea, it was very empowering. I always thought it was a good idea. But when a professional says "Yes, this is very helpful. We've seen people in these situations where their loved one hasn’t done this, and it's been a nightmare”, that was enough for me. One of the conversations that was crazy helpful was about DNR. My palliative-care doctor sat there and talked to me about how on TV we see somebody floating in the ocean and then they get rescued and resuscitated and within 5 minutes they're up jogging home. He said it's nothing like that. He explained that in my case if my heart stopped as a young woman, odds are good it will be because of the cancer. He said if we can resuscitate you, your ribs will be broken, your chest wall will be damaged, your muscles will be all torn. If we bring you back to life, odds are good the cancer has affected your heart and we're not going to be able to do much for you. He gave me some stats. Only 25 % of people are even able to be resuscitated, and then from that very few actually live afterward with a good quality of life. It really opened my eyes. He said, "I will support any decision you make. I just think that you should know some facts." And I thought, “I'm really glad you told me that because I didn't understand that part of it.” It really opened my eyes to what actually happens. It made it a little less emotional and more factual, which I really appreciated because a lot of this is really emotional. One resource that I found very helpful was a workbook called “Speak Up” and it’s all about advance care planning. I flipped through it and I thought, these are good questions! Advance care planning is tough, but not being able to communicate my wants and needs later is going to be tougher. Making decisions and talking about what I want if I can’t make decisions for myself later on has been hard. When we're talking about DNRs (Do Not Resuscitate orders) and being kept alive by machines, those are shitty conversations. It wasn't that long ago that my husband and I talked about whether he knew my wishes if I were to become unconscious. I realized I had not communicated them to him and I asked him if we could go through the questions in the Speak Up workbook, and he agreed. He was very receptive, but it was hard. There were tears. I talk about this stuff all the time. I speak in front of people. I write. I'm very active on social media. It was still hard going. Talking about it makes it real. This is actually happening. He just said, "I don't want you to die." That's a hard one. But is that conversation harder than me becoming unconscious and him having no idea what I want? No, it's not. I'm happy we had that conversation, and my husband is too.

I have done everything that I think I can do ahead of time.

A will is done, a power of attorney is done. I’ve had those hard conversations about what I want if there comes a time when I can’t speak for myself. I’ve made funeral arrangements with the funeral home. It’s really hard, but I do not want to put the burden on my loved ones of trying to guess what I would want because I couldn’t handle having those conversations now. That's way harder. I would never want to put that on my family. Ever.

I've been on the other side where I've had to plan someone’s funeral when we didn’t know what they wanted.

We were looking at each other asking, "Is this the poem that you think he would like?” I don't want my family to be worried about what friggin' poem to pick for my funeral card. I went to plan my funeral when I went back to my hometown for a visit with my parents. Shot a one-minute video before I went in, shot a one-minute video after I was done. We're from a small town. My brothers played hockey with the son of the person who opened the door into the funeral home. That's the kind of town that we live in. I went by myself. I would have asked my husband, but he wasn't able because he works. I just knew my Mom couldn't do it. I didn't want to put her through that. She's already having to go through the real thing. I didn't want to put her through the dress rehearsal. I didn't want anybody else's opinion, and it’s not like I have hard and fast rules about my death or my funeral. I didn't shed a tear. To me, it was my last gift to my family and friends. The last place they're going to want to be two days after I die is the funeral home. They're going to want to be together sharing memories, going through pictures, crying, eating, drinking, whatever. So I decided I’m going to pick out these boxes for them. They will still have to go, but hopefully, it will be easier for them and it's a 10-minute meeting of "She said this," or “Are you fine with that?"

I look after all the finances and bill paying, and I’ve already planned for when I can’t do it anymore.

I am very Type A. I have everything written down for him: instructions on how to do things, policies written down and passwords. Anything and everything you can imagine. We haven't gone over it because we're not there yet but, I have taken care of it all. I have so little control over anything right now that if I can take control over things like this, it helps.

My father in law was diagnosed with Stage IV lung cancer a few months before my cancer came back terminal, and he died within 10 weeks.

We watched him die in palliative care and he started that death rattle. We had been warned about it. The way the nurse explained it to us was that the lungs fill with fluid and they can't clear their throat or lungs, and that's the terrible sound.  We thought how awful that must be! And then recently, we watched a video about death. The palliative doctor described the death rattle as your body being in such a state of relaxation that it's not so much a struggle as it is a side effect of everything calming down. Your breathing is more shallow, and you’re in and out of sleep. I thought if I had not been willing to watch these videos and to try to learn about the process of dying, I wouldn't have that piece of information. I ended up sharing it with my husband, and I know it gave him some relief about how his Dad died. And I'm hoping that if I get to that point where I have that side effect, he'll be less panicked for me, and hopefully he'll realize that it's just a side effect of what's to come.

When I first I found out that I wasn’t going to survive this, I thought, “Oh My God, I have to single-handedly donate and fund a children’s hospital in my name!”.

I’m going to have to come up with millions of dollars because nobody is going to remember me otherwise. And then I began to realize the difference between tangible legacy and intangible legacy, and the intended legacy and the unintended legacy. We’re all living our legacy, whether we want to admit that or not. Whether you're terminal or not, you're still living your legacy. When I make somebody laugh so hard that they pee a little, that is part of my legacy - that I consider myself to be a funny person. The way that I make people feel, the love that my niece and nephew feel from me, is part of my legacy. The stupid memories that we all have from growing up together. I have been best friends with three of my four bridesmaids since we were in kindergarten. Part of my legacy is that I have friendships that last forever. I think being a “price matcher” is part of my legacy. It's all the things that people know me for. It’s the tangible aspect of it too. My Youtube channel is part of my legacy. You don’t have to be in a textbook or build a massive hospital that saves millions of children a year to have a legacy. That isn't necessarily what it means. I'm a good wife and a good daughter and I have a strong relationship with my brothers. That’s what legacy is. We all have a legacy.