Alison Chernenkoff

Alison Chernenkoff - ProfileHometown: Edmonton

What school did you attend? St. Francis Xavier High School (class of ’97)

Do you work? Yes

What are your career goal(s)?  I have schooling as a medical office assistant and in the next few years hope to be a Hearing Aid Practitioner.

How did you find out you were sick? What event(s) led to the diagnosis?

In October of 1997, I was just starting season for indoor soccer and I noticed I had very severe knee pain that would not go away. I couldn’t think of any way I had injured it either. I made an appt to see my family doctor. There, they took x-rays and assumed it was torn cartilage and shuffled me off to an orthopedic surgeon. In the meantime, my family doctor went on holidays before the x-rays came back. My referral to the surgeon was enclosed my file and the x-rays that had been taken earlier.

In early spring about March 1998, I finally got in to see the orthopedic surgeon. My visit was very short and almost pointless. He didn’t seem to really pay any attention to my case and quickly chaulked it off to having torn cartilage. He then booked an appointment for arthroscopic surgery. The surgery was booked for April. In the mean time he had told me I should do physio. The pain got worse and I tried to make an appointment with him but they couldn`t see me till June.

While I started physio, the doctor called to bump back my surgery to late June. In the early morning of May 13 I woke up in screaming pain and told my mom to call my physiotherapist to see if she could get me in. The therapist said that she has a hunch of what it is and I need to go to emergency right away. So we rushed to the hospital.

After waiting and waiting and having x-rays taken, they called in an orthopedic surgeon who deals with bone cancer. They also called in the first orthopedic surgeon I saw and together they gave me the news of a large tumour, and that we need to act quickly to see if was cancerous. The tumour was in my right leg in the knee.  When it was near the end of the visit and I was alone with the first surgeon, he admitted he didn`t take the time to look at the x-rays as he was sure it was torn cartilage floating around.

The verdict came back as cancer. They called it Osteogenic Sarcoma. They said if they had caught it earlier I most likely would have had a knee replacement. I will never forget my mother’s face as she almost hit the floor when hearing that. I was then referred to the Cross Cancer Institute. After that I went through more x-rays, bone scans, CT scans, MRI’s, biopsy, blood tests, etc. It was such a whirl wind of appointments and tests when that diagnosis was given.

I started chemo two weeks before my grad in May.

I continued my chemo up until about two weeks before my surgery which was July 9. When I had my surgery, they decided to do a limb salvage. They at first removed 33 centimetres in my leg, the area above and below my knee. They replaced this section with a donor bone. However over the years the hardware has broken several times and now my limb salvage starts four inches below my hip joint, and ends six inches above my ankle.

After that I went to the Glenrose Rehabilitation Hospital for a long time and then back to the Cross Cancer for more chemo. On Halloween I received the news I was done chemo. My cancer was in remission.

What year was it? What was your age at the time? It was 1997 and I was 17

At what level of education were you at diagnosis? Finishing grade 12

What was your diagnosis? Osteogenic Sarcoma

What were your first thoughts when diagnosed?

I heard the word cancer coming out of their mouths over and over, but it didn’t really hit me then. It was like I was numb. I had no idea just what I was about to experience.

How did your family react?

My mother at hearing the diagnosis turned pale and came very close to fainting on the floor at the hospital. My father and brothers didn’t really show any visible reaction, I could tell they didn’t know what to say. I think they were just hearing the words and not totally computing it, like I was.

How did your friends react?

At the beginning it seems that everyone comes to see you, even people you don’t know, know your name and what is happening. You become super popular for a really horrible reason. When the “novelty” wears off, only your really good friends seem to appear. I found it to be very true that when you go through something like this, you find out who your real friends are. While battling cancer, I lost many of my friends.

The ones who were there though, were amazing, and I don’t think I could have done as well in my fight without them. Thank you to them.

Everyone has a different way to deal with illness. I think that many of them just saw the cancer and my new appearance; they forgot it was the same me inside. I don’t blame them though. If I was in their shoes then, I honestly can’t say if I would have reacted any different.

What did your treatment consist of?

Medical side:

Adriamycin, mesna, cisplatin (which changed after the first cycle to a sister drug after causing sever hearing loss) ifosfomide and methotrexate.

I believe if I recall this right I was in for a week or week and a half, and then supposed to be out for a week. That didn’t usually happen! Most often I would be discharged and then have to return the next day for transfusions due to a blood infection and stay there another week to recover and get out three days before the next round of chemo.

Non-medical side:

I was sick all the time from the chemo drugs. I had lost all my hair. I felt very sore, swollen, puffy, and gained weight due to the steroids they give you. Nobody was able to touch me for I felt like I had been a doormat to a professional sports team. My mouth was covered in what were 50-90 canker sores. I could barely walk 20 feet due to feeling drained. It was horrible.

In which Hospital(s) were you treated? Cross Cancer Institute in Edmonton

What is your current medical status? Remission for soon to be 13 years.

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

Physically, my life is never what I thought it was going to be. Due to having cancer that had wasted away a good section of bone and muscle in my right leg, I had to have a limb salvage. I have had that repaired four times. I am unable to bend my right leg. It is permanently straight. I now walk with a limp. I am in pain every day. I can only go the speed of a slow walk. I am not able to participate in adult sports or teach and play sports with my children.

I now find my memory and mind is all foggy and my hearing is horrible. Nothing is clear anymore. I have lost the person I was for the last 17 years. I was now having to find a new me, the cancer survivor me, the me that now has huge limitations.

Emotionally and spiritually I am still trying to accept my reality. I have joined the Terry Fox Foundation. I speak at schools and other public events around the Terry Fox Run. I find it brings me comfort to share my story and show them just where the money the raise is going.

Socially is still hard. I have great friends and family for support, but you are always looked at strangely when you have any kind of disability that people notice. I am constantly reminded just how obvious my battle scars are when I am asked “What happened?” This result was so far from what I envisioned my life being like.

 

What was the toughest part of your challenge?

Being stuck in a hospital with no one my age, away from my life as I knew it. I missed out on so many things, including being home with my brothers and sister while they were growing up and sharing in their exciting milestones. It was so lonely.

 

What is/was the best part about having your challenge?

I can honestly say there is/was no best part, except it being over!

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

Doctors are not always right! There is room in the medical system to fail. You have to be your own advocate and fight to get to the bottom if something doesn’t seem right.

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

The great line from The Shawshank Redemption: “Get busy living or get busy dying.” I was ready to get busy living!

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

Before it was just a word that other people got. Nothing like that could happen to me. I now know firsthand just how EVIL cancer is. Cancer is not just something you face once. Sure you may only have to deal with the meds once, but the effects of cancer are always there for the rest of your life physically and emotionally.

If you did not attend a support group, why?

There wasn’t any I could find in my area for people like me. Sure there were lots for breast cancer and testicular cancer but none for bone cancer and none for my age.

Would you if one had been available? Yes

Do you think attending one would have helped you? Definitely!

How are you connected with Young Adult Cancer Canada?

For a long time I have been hunting for a support group like this. Young Adult Cancer Canada has finally put a face on what young adults with cancer are going through or have been though. I stumbled across the news one day and it had on their info about the conference that was happening in March. I knew I had found what I had been looking for.

What are your thoughts/feelings on Young Adult Cancer Canada?

When you are young and dealing with cancer, although you have friends and family who are there for support, they don’t understand what you are truly dealing with medically, emotionally, or socially. You desperately need someone, anyone, to try to relate and to talk to about it. I don’t think I can even put into words what finding this group has meant. I feel that this organization was so desperately needed and a big thank you to Geoff and everyone else involved.