Danielle Taylor

Dani

Name: Danielle Taylor

Age: 26

Hometown: Toronto, ON

What was your diagnosis? Colorectal cancer stage IIIA, currently in monitoring

What school do you attend? York University

What is your career goal? Medical Social Worker

What is your occupation? Student at York University and employed in media relations for a podcast advertising agency.

 

Your cancer experience:

How did you find out you were sick? What led to your diagnosis?

My tumour was discovered on an extended visit home to visit my family in Sarnia. I was only intending to stay for a week, I returned every summer to work in a children’s theatre camp. I was really struggling with my digestive system; my stomach ached all of the time. Earlier in the summer, I had suffered a severe sprain that required constant Advil to keep the swelling under control under the cast. I was extremely busy, too busy to take in the fact that I was dropping weight like crazy, using the bathroom to pass mucus and blood about 25 times a day, and had even started passing out. I had even passed out at a concert hall and had to field off drug suspicions from a security guard.

When I came home to visit, my mom was extremely concerned with how sick I was. I had previously been told by a walk-in clinician in Toronto that I likely had acid reflux and I was prescribed an antacid. At the hospital in Sarnia, I had the great fortune of having a very on-the-ball resident following my care. She noticed high inflammation in my blood work and sent me onto a GI doctor to look for Crohn’s or Colitis. I took some time off my internship back in Toronto and waited for the GI doc to come back from vacation. Soon enough, I had my colonoscopy. Before the procedure, we went through my family history, and it did seem like colon cancer came up a lot. I was assured by the doctor that this sort of cancer is extremely rare in my age category.

When I awoke in the recovery area, the mood was starkly different. I was introduced to an image of my tumour and told it had been biopsied. In the next few days, I was rushed in for an MRI and a CAT scan. Soon enough it was confirmed. It was cancer.

What year was it? What was your age at the time?

It was in the summer of 2013 and I was 23 years old.

In which hospitals were you treated?

Diagnosed at Sarnia General Hospital, but treated in London. I spent time in three of their major hospitals: Victoria Hospital for chemotherapy and radiation, St. Joseph’s Hospital for small surgeries and procedures requiring radiology, and University Hospital for my two bowel surgeries.

At what level of education were you at diagnosis?

I was just entering my final year of university in English with a focus on Drama.

What were your first thoughts when diagnosed?

“Of course.”

I grew up downstream from one of the most toxic places in Canada, the Chemical Valley. I’ll never know what caused my illness for sure, genetics came up inconclusive and the data simply isn’t there for the effects on the population of Lambton County. Regardless, it was a pretty common joke growing up that we would all get cancer from the petrochemical plants. When I’d explain to my non-Sarnian friends what home was like, it was impossible to ignore the environmental situation. I think I was more likely shocked, but I remember compensating for the sheer confusion of the situation by assigning blame, by harnessing logic.

How did your family react?

It felt like a bomb had gone off. Everything had to move so quickly. I think everyone was reasonably scared, on my mother’s side especially. She lost a brother at a young age to blood cancer. I think when cancer has been so closely linked with death in your personal experience, it becomes hard to divorce it from that idea. My family was extremely supportive, but sometimes I felt quite guilty for bringing cancer back into their lives again. I also hated that my younger siblings had to go through colonoscopies themselves and have that fear put into them. Everyone was great, but it was a really tough time.

How did your friends react? Were you treated differently, or did things remain the same?

My friends were awesome. It was great to see how well I’ve done by surrounding myself with good people. Of course there was the odd case of someone acting inappropriately and not really being a healthy person for me to be around, but all in all, I’ve really curated an amazing collection of friends. Everyone just wanted to help. One of the most overwhelming — but beautiful — days was when many of my friends showed up to help me move out of my apartment before treatment began. The move itself took, like, an hour max, but afterwards we spent the day on my porch just laughing and having a good day.

If any of those relationships have changed, the brunt of that falls to me. I find that I’m far less able to be social or spend emotional energy. I hid a lot while I was sick; I still do. I often find it much easier to just share something intimate via social media to cheat the intimacy of friendships. It became too painful to have to reshare my experiences over and over to the different people who loved me and were interested.

What did your treatment consist of?

It was a long haul. I remember thinking I could probably knock it out in about a semester. I have an uncle who went through colon cancer and was able to just have the disease resected and followed up with a few rounds of chemo. I was convinced my care would be the same. Unfortunately, I required a more aggressive treatment plan.

It took a little while to nail down treatment. The cancer team in Sarnia has limited experience in treating young adults with cancer, and the treatment they recommended wasn’t the right path. I was told I would first have a radical surgery that would leave me with a permanent colostomy bag, followed up with some chemotherapy. I was also told my fertility would remain unaffected, which sounded really wrong to me. A friend who’s a nurse told me I needed to be asking about what it would mean, and for the doctors to tell me that it wouldn’t affect anything is frankly insane.

Thankfully, Sarnia has to present care plans to the oncology centre in London. The oncology centre shot down the plan and things were moved to the good people in London. This did mean that I became a commuter cancer patient, roughly an hour to and from treatment without traffic. The plan turned into oral chemotherapy and 32 radiation treatments to first shrink the tumour, a surgery to resect the tumour and place an ileostomy, more intravenous chemo, and hopefully another abdominal surgery to reconnect my bowels and remove the ostomy. It would take at least a year.

My fertility would be affected, so the first thing that was done was the removal of my eggs at TCART clinic in Toronto. I was given 10 days to do this, anything longer and we would have to start treatment. By some miracle, this was made possible. I came in on the exact right day of my period. I started IVF and we just put everything on credit and crossed our fingers. Luckily, the drug company donated the cost of medication to us and the constant imaging processes were covered by my dad’s drug coverage. It was an extremely emotional time. The hormones, plus the shock of everything, made things really hard, plus I was still really sick as my tumour was alive and well. I moved out of my apartment and couch surfed at my best friend’s apartment while doing this. The day my eggs were removed, I woozily hugged my boyfriend goodbye and rode straight to Sarnia to prepare for treatment. It sucked.

I was next supposed to have my ovaries moved out of the way to avoid menopause, but they were too huge from the IVF. Radiation and oral chemotherapy was really hard. I stayed in a hotel that the hospital in London uses as their lodge for out of town patients. I spent a lot of time by myself, except for my radiation roommate or my mom or boyfriend when they were able (or when I was able). It started off pretty whatever, but after about a week I developed a horrible cold and I was so very sick. By the time that was over, the radiation burning had begun.

My radiation field was essentially my vagina and anus (glamourous), and that’s not a great place for burns. I was in so much pain. I would often pass out after screaming on the toilet. I started using a shower seat because I couldn’t make it through a shower without passing out. Fainting is terrifying. I had to pace getting out of bed. I was prescribed heavy painkillers and spent most of my day passed out.

But I got through it.

A month later, I had surgery to remove the tumour and place the ileostomy. That was also really tough. After waking up, I was in pretty extreme pain and confusion. I have a pretty radical scar up my abdomen from where they went in. My body and mind weren’t really on board for adjusting to the ileostomy. I went 10 days without eating because I couldn’t keep anything down. I was placed on a “sips” diet and they became pretty worried about heart failure as my body was purging everything really fast. My ileostomy was flushing all the IV fluids out about as fast as they went in. I was terrified it would always be that active, that I would never be able to leave my house. My ileostomy didn’t have the best fit either — the device had to accommodate for a dip in my flesh — which pretty much meant I was always leaking and burning my skin. Things got better with time and coaching, but I never really got the full hang of it.

I was given a few weeks out of hospital before we were back at it. The margins were clear, but we did discover that the lymph nodes had been involved, which tacked on some time with the next round of chemotherapy. I had a Port-a-Cath placed, which I would recommend to anyone getting a lot of intravenous care. My veins are terrible for poking! I went for six months of chemotherapy on a two-week schedule. I would go to the hospital for an eight-hour infusion that would kick the shit out of me, then come home with a little chemo pack for 48-72 hours that would continue to kick my butt. My home nurse would take it off and hook me up with some IV fluids for 24 hours, and finally I could de-access my port. It always felt good to be tube-free.

The side effects were hard. The nerve damage really bugged my hands and feet, my ostomy would be much more active, and I would just be really exhausted. Going back to the hospital for more would fill me with dread. It felt like when I just about felt like myself again, it would be time for more treatment.

Time passed, though, faster than I thought, and I was done! I was told from here on out, we’d just be hunting for the disease to come back — no more treatment for the time being! I figured the hard part was done.

The reconnection surgery was supposed to be pretty straightforward. After I woke up, it felt amazing to feel my bloated tummy and not have a bag there. I was up and walking much faster, fully confident I would be out of there super fast. We just had to wait for me to pass some gas and stool (further glamour). I felt a lot of pressure in my gut, but I was told that it was just constipation. Once my body got on board with pooping, I would get to leave. About 5 days after I had been admitted, I passed some stool and I left.

I was back about 48 hours later, maybe less. The night after I returned, I was having these waves of intense cramps. It was the same pain level as when I had been passing out on the toilet during radiation. I’ve never had kids, but I imagine it is similar to contractions must feel like. The pain came in about 20 minute waves. The home nurse advised that it was likely just bad gas and that my body was still adjusting. If it was still bad in the morning I should follow up with my family doctor. By the next morning, I had a fever going on and my family doctor had my dad rush me back to London for assessment by my surgeon. I think the resident on duty was snippy with my family doctor, again thinking it was gas. After a CT scan revealed an abscess the size on a melon (only, like, a cantaloupe) pressing on my lower abdominal organs, the surgeon was called in. He appeared on a Friday night wearing a suit. You know you’re sick when that happens.

I spent another two or three weeks admitted for care. Drainage tubes were placed and I was in a lot of pain. The fever would not go away. Another surgery was discussed, but I think ultimately they were afraid I was too sick to get through it, so we took it the slow way. The antibiotics flared up my nerve damage from chemo, and ever since that time in the hospital, I’ve had permanent nerve damage in my hands and feet. I went home with a drainage bag for another month. I had to delay my plans for moving back to Toronto. It was really frustrating because I was convinced I was done, but cancer doesn’t cleanly fit into your life. It has been about a year and a half since that last tube was removed, but I’m still recovering.

I get scans every six months, blood work every three, and colonoscopies every year. A lot of my day to day is managing my menopause, my pain, and especially my bowels. It feels like I haven’t quite figured out how to balance all three. Acupuncture and pelvic floor physio has been a major help. I’m trying to get things as natural as possible for pain management. Recovery is a holistic journey.

Emotionally I’ve been all over the map. Name it and I’ve felt it. I spent a lot of time angry and isolated. The anger was bad. I’m still angry some days. It’s hard for me to even think of how I felt then because it really felt like such a marathon of care. In some ways, the structure of care made it easier on me emotionally. I felt super supported. It’s the after that has been tough. I thought I was supposed to feel grateful and hopeful everyday. I often feel sad and frustrated and ashamed of feeling that way. I try and put on a brave face, but every time I have to throw out a pair of underwear and put on a diaper, I feel choked up with despair.

I often feel emotionally fatigued by the amount of doctors I still see. I love many of my doctors, but honestly, I’ll be grateful to not be forced to think of my body so critically so often.

It’s easy to focus on the negatives once I get going, but I’m also experiencing joy and pride every single day. I finished my first year back at school with nearly all A+ grades with one ugly A soiling things up. I’m more focused than I’ve ever been. I have a respect for myself that I didn’t before.

What is your current medical status?

In monitoring! I need five years under my belt and then I can take a big old sigh of relief. Until then, every time I feel a creak of pain, I’m looking at a big old workup.

How is life different for you now post diagnosis?

Everything is different now. I think one of the things about cancer care that should be preached is that there is no getting back to before, but that doesn’t have to be a bad thing.

Physically things are tough. My weight dropped a bunch when I was sick, and honestly I loved how I looked at my sickest. Isn’t female body image a crazy thing? Medication, inactivity, and emotional eating has seen me return to my old pudge, and that has been hard to contend with. I’m seeing a food therapist right now to help me rewire my habits. I’m also working on getting off some of the meds that ballooned me up. When I get back to my cancer weight, it’ll feel a lot better knowing that this time I did it on my own, not because a tumour was starving me out.

Emotionally I have always been someone with my heart on my sleeve. I’m pretty quick to cry and I’m always looking for ways to comfort myself. I do feel more emotionally mature than before my illness. The things I feel are completely legitimate, and I try to give myself permission to experience these emotions. I’m learning to be more communicative with how I am feeling, which is tough, but absolutely the way to go.

Socially, I am a lot quieter than I used to be. I was never a big drinker, but now I can’t even enjoy a beer without swapping out to diapers, so I’ve completely dropped it for the last three months or so. It feels a little odd to be sober in this nontraditional fashion. I miss being able to have a Caesar at brunch! Toronto takes brunch very seriously.

I don’t have a lot of energy so I really have to push myself to go out or make plans. I spent so much time isolated during treatment and being mad about it, it’s pretty strange that now I continue this social pattern by choice.

I live with my boyfriend now, and that’s so much fun. I was worried about the jump from cancer long distance to living together, but it has been really awesome. He’s the most patient guy in the world. Our relationship probably looks pretty different from many couples our age. I’m trying to get the sex component of my life back, but that’s a work in progress. I swear, he’s the most patient person in the universe.

I’ve never been connected to spirituality. I grew up in the United Church, but I think I was about eight-years-old when I decided it wasn’t really for me, which is super silly to think about. It just doesn’t fit me. That doesn’t mean that I’m not constantly inspired by the people and things and experiences of my life. I’m more aware of these things since illness, but I certainly didn’t come to God in this experience.

What is the toughest part of your challenge?

What a loaded question. Likely the toughest part is reminding myself to have compassion for myself. To treat myself well. To value what I have done for myself. To respect how I continue to live. It can be hard to not feel ashamed of myself, between the bowel stuff and weight stuff. I have to give myself credit for not only recognizing this, but also working to heal myself.

What was the best lesson you took away from your challenge?

I’m a naturally depressive person. I remember expressing to my therapist that it was really hard to push myself through all this pain to live when I wasn’t super enthusiastic about life in the first place. But, there is this part of you that is always going to fight, a part that really does want to live. I am now completely humbled by the sheer force of the will to live.

What really motivated you to keep going while you were sick?

I was really blessed by a great support system, but really, I’m surprised by how much of a motivator the sheer lack of choice will give you. What was the alternative? To turn over and die? To just not give it a shot? I got through all my treatments pretty gracelessly, screaming and crying through out. But you just have to do it. You simply have to.

What are your thoughts and feelings about your illness now? Have they changed since before your diagnosis?

They are different every day, but predominately I have to acknowledge the sense of purpose I have now. I’ve pivoted from a half-hearted goal of being a theatre educator and now I’m heading toward medical social work. I love medical anthropology now, and I’ve become super passionate about the individual patient experience. I volunteer with the social work department at Princess Margaret Hospital down in the radiation department. The people I meet there inspire me so much. I leave every shift with a smile.

And I’m really good at it. I can use my improv and theatre training, my experience in telling stories, my own cancer journey, and my empathetic ear to really help people. I’ve been good at things before, but I really feel inspired by this work. I’m not sure I can say that about anything I’ve done before.

What are some preventative measures that people can take to lower their risk of having an experience like yours?

You don’t have to be alone! And go offline for support! There are too many predators out there looking to leach onto your illness experience. My blog was safe until it wasn’t, which sucked because it was my primary source of support for most of my treatment. Get involved in patient support programs. Take some classes. I wish I had taken on the ostomy training before having one. Just be open to the support that is given to you. My experience didn’t need to be that hard.

Did you attend any support groups during your challenge?

No.

If you did not attend a support group, why?

I was just not into it. Everyone I saw at the hospital was old, and there really wasn’t a YA thing going on at my hospital. I thought I had found YA support through Tumblr on a blog I had there. I held court with other cancer patients, but I found out after my treatment was over that one of my closest online cancer pals was actually a catfish. She was exposed as a medical student that had a habit of performing cancer online. Honestly that has really burned me from meeting people on social media. She’s no longer a medical student and I really hope this person is getting that care she needs, because ultimately she’s a sick young woman herself. Now I’m very strict with who and how I interact with people online regarding my illness. I’ll pass along some basic care info, but I’m not getting close unless I’ve met you person to person, unless your illness is verified to me in some tangible way. It was a tough lesson to learn.

How are you connected with Young Adult Cancer Canada?

After my online support system fell away, I felt so alone in my cancer experience. I lost the only place I could talk about it where I felt my experience was really understood.

I applied for Retreat Yourself in tears on my laptop at a Starbucks only a few weeks before the event was to begin. I figured I wouldn’t get in anyway. There are few things in my life I’m more grateful for than that things aligned for me to be able to go to Retreat Yourself in 2015. I met some beautiful people and I was able to unpack so many of my emotions that I had stored away.

Survivor Conference came afterwards, and finally I met some awesome women that were also young and living with colon cancer. My butt buddies. And Retreat Yourself Adventure? I brought my boyfriend, Pat, to that event, and it provided a really important experience for us to reconnect and change how this disease was experienced in the context of our relationship. I love what YACC has given me. It has totally transformed my life.

Are you interested in helping others facing cancer challenges? If so please let us know how you can be contacted.

Please do contact me, but don’t you dare cancer catfish me again! I would absolutely encourage the use of YACC online platforms for connection. Please do allow some time for responses, part of my self-care is taking time with social media. I don’t like it to run my life!

I can be reached on the following platforms:

Twitter: @dtayl

Instagram: @daniyell89

Facebook url: /daniellemarietaylor

You can also email connect@youngadultcancer.ca and we’ll forward your message to Danielle.