Nalia Barkman

Nalia Barkman - profileAge at Diagnosis: 28 (2005)

Hometown

Winnipeg, Manitoba

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

One night I had excruciating pain in my lower back that I had never experienced before. I was terrified. It went away in the morning but for the next year, I had pain every night; at first in my back but then in my left leg. I would often feel feverish as well. When I would drink even a sip of alcohol, I would have pain immediately. I went to a walk-in clinic where the doctor told me that I might want to change my mattress. Eventually, I saw a specialist who sent me for x-rays and several MRI’s which showed “unhappiness” in my femur but nothing more specific.

Almost a year after I first began having pain, they did another x-ray & saw that my bone was actually beginning to bulge outward. This got them a bit rattled. They scheduled me for a bone marrow biopsy in my leg thinking it was a bone infection from drinking funny water in Thailand or something. Nope. Lymphoma!

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

What was your diagnosis?

Hodgkins Lymphoma, Stage IV because it had spread from my lymph nodes to my leg.

What were your first thoughts when diagnosed?

My life was just humming along nicely. I had all kinds of plans to take a trip to Africa, to move out to an island on the west coast with my boyfriend. You think that’s adventurous? Try beating Lymphoma, ha ha! I had finally figured out some sort of future and now it was going up in smoke. This was very sad.

How did your family react?

Initially, I think my parents found the idea much harder to cope with than I did. Parents want to spare their children any pain & suffering in life; I think they felt helpless. In the end, they showed a magnificent strength and supported me unconditionally. I rented a house together with my brother & sister-in-law which allowed me some distance from my parents so I could live as “normal” a life as possible. My youngest brother has special needs and a phobia of anything having to do with doctors and hospitals. I think it was hardest for him. He stayed as far away from me as possible. He was terrified that the cancer might be “catching”.

How did your friends react?

A moment with Tessa as we walk into Sukkothai restaurant on my 29th birthday: “To think that you, of all people, end up having to be pumped full of chemicals…” and she laughs & laughs. “You, a vegetarian, eats organic, doesn’t drive a car…”

“Well, I’m glad you find it funny,” I say, grinning, & I actually am. This could be sad or terrifying, but funny is exactly what it needs to be right now. Let me tell you what’s ironic, Alannis.

What did your treatment consist of?

Medical Side: I only did the chemo part of things. I had the choice of doing the standard treatment or participating in a study, which means that they were experimenting with slightly different drugs or a different combination or schedule to see if it should replace the standard treatment. After much deliberation, I decided to be a part of the study, which seems crazy but it was in the last stages of 10 years of testing and my Internet research suggested that the odds were about 20% better. It was a hard choice, weighing the 20% against long term potential side-effects like infertility.

I was able to do my chemo as an outpatient. I did, however, spend some quality time up in D6, the Isolation Ward at Health Sciences Center, where they stick cancer folks with infections. A “Feb-newt”, they called me: febrile neutropenic, which only meant that I was feverish from infection & had no white blood cells left.

The side effects were predictably awful, & I seemed to get every single one in the book & then some, but surprisingly, I found that I could take it all in stride. I decided to treat my side effects with herbs as much as I could & together with my herbalist (who is also a good friend) I came up with a herbal regime to help me boost my energy & immune system & to protect my organs from the intense chemo. This was really important for me to do because it helped me regain a sense of control, of taking a role in my own healing. I talked this all through with my doctor & my pharmacist, & worked out a schedule so that the herbs wouldn’t interfere with the chemo.

Non-Medical Side: Of course, there were times when I felt discouraged, when I had no energy or just felt plain lousy and couldn’t get out of bed. Sometimes I felt really alone because no one else I knew was going through this shit. Sometimes I wanted to complain or express fear but held it in because I didn’t want my family and friends to worry about me more than they were already.

But in some ways, having cancer was the most freeing experience I’ve ever had. All the things I used to lose sleep over – a fight with a boyfriend, not fitting in, not having the right job, feelings of aimless discontent, what is my purpose in life? – these things suddenly ceased to matter. What’s the point of worrying how you look when you have no hair?

Things were crystal clear: I have cancer. I need to focus on being well. I think this is the “living in the moment” that we are told to aspire to. I happened to stumble upon it because I couldn’t figure out any other way to do it; thinking about the future, even the immediate future, was scary because I didn’t know what would happen with my health next and the past was irrelevant to my present situation. There was a kind of peace that I found in the midst of everything gone haywire and I am very grateful for it, wherever it came from. I think it saved me.

In which hospital(s) were you treated?

Cancer Care Manitoba, Health Sciences Center in Winnipeg.

What is your current medical status?

In remission!!!

How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)?

The biggest thing: a greater love of life.

I’ll be in the middle of some everyday thing: riding my bike down a hill, working in warm sun in the garden, laughing with a friend, eating a really good sandwich and I’ll think, “Holy shit, this is so great”. I revel in how much my body can do compared to when I was sick.

On the flip side is the fear, what if it comes back.

And I know something I didn’t know before: that I have the strength to beat it. I’m really damn strong. RRRAAHH! Hear me roar.

What is/was the toughest part of your challenge?

I think the hardest part came after I was done my treatment and had finally reached that point I worked so hard for: remission! What does this mean? I’m not classified as “sick” anymore. Time to get on with normal life. The problem was that I wasn’t feeling totally normal yet. The biggest obstacle was (and still is) not having enough energy to do all the things that “normal” people do like going for a hike with friends, working full time, fitting a million little things into one day.

People began to expect me to get a move on. There were people who had stuck by me all the way through my cancer who got fed up with me at this point because I was supposed to be “better” now. Very ouch. I had high expectations of myself as well, tried to do all these things and ended up exhausted. I wondered if I was just a whiner. I was finding my limits. A year has passed since the end of treatment and I am feeling more energetic all the time but it will still be a while before I’m at 100%.

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

I had a crush on my doctor. I had to get through to the part where my hair grew back so I could look cute again.

What lessons or messages have you taken away from your experience?

There was a feeling I had, even before my diagnosis, that I could not fail. The feeling that if I fell backwards, I would be held up. This sense of invincibility stayed with me throughout my treatment; even when things were going really badly I could still locate this belief somewhere within me. I’m not really sure what to attribute this to but I know that during this time, at least a hundred people told me that they were thinking of me, praying for me, sending good energy my way. Before having cancer, I often struggled with the feeling of not fitting in, not belonging. During this time, I had no doubt that there is a strong circle of support around me that even extends beyond people that I know personally. I am extremely lucky. All of the blessings sent my way were undoubtedly healing things.

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

I’m sort of in the process right now of trying to figure out what this cancer thing will mean to me in the rest of my life. Even when I’m 82, I’ll remember that 2005 was Cancer Year. I feel like it’s an important thing to share my experience with people because then I’ll figure out what to glean from this myself. The word Cancer means this has become a Life Experience rather than just the pain in my leg it was before diagnosis.

What are some (if there are any you know of) preventative measures that people can take to lower their risk of having an experience like yours?

I asked my oncologist this question awhile ago. He said, “Nothing”. No one seems to know a whole lot about what causes Hodgkins Lymphoma. When I was first diagnosed, they muttered something about possible “environmental factors”. So I got really mad when the City of Winnipeg fogged for mosquitos in my neighborhood last summer. But I don’t even really know where to direct this anger.

Did you attend any support groups during your challenge?

I didn’t look for a support group when I was going through treatment. Maybe I was too busy doing the cancer thing to talk about it. Maybe some part of me thought it was cheesy. Maybe I thought it would be full of “Look Good, Feel Better” ladies who would look askance at me for going bald.

Anyway, a few months after treatment I heard about a support group for young whippersnappers like me and I went; it was totally amazing. None of us could shut up; we just wanted to talk and talk. It was nice not to have to pretend as we sometimes had to with our friends and family to make it alright.

I just went to this one meeting and then I moved out to the West Coast. I really wish there was something like that out here but I live in a pretty remote place. So you guys are the closest thing to a support group I have.

How are you connected with Young Adult Cancer?

I saw a poster for Young Adult Cancer posted on the wall of the “Isolation” Ward where I was recovering from a nasty infection. I had nothing to do but walk up & down the hall, so I must have seen that poster maybe a million times. It was advertising the 2005 Retreat in Newfoundland. I wasn’t able to make it out to the retreat because I was still doing chemo but eventually I checked out the website and the rest is history.