Krista Simpson

Age at Diagnosis: 20

Current Age (at time of profile): 21

Hometown

Eastern Passage, Nova Scotia

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

This is a bit of a story. It all started in late March, 2006 when I noticed, while cleaning my neck in the shower, that I had multiple little lumps. I’m an Ultrasound student, and my teachers and classmates scan me, so I had them scan my neck and we saw multiple lymph nodes my professor told me to see a doctor. So I saw my family physician and he sent me for a mono test, as I had mono in Grade 11. At some point he also sent me for a Chest X-ray, but it didn’t show anything at the time. Meanwhile, it’s April and it’s exam time and I get really sick no energy, no appetite, and fevers. Also my nodes are tender. I keep getting mono tests and they are all negative. So my family physician sends me to a Head and Neck Specialist and orders a CT. The CT shows that not only are there nodes enlarged in my neck and clavicle, but they are in my Mediastinum (around the heart). The Radiologist indicates that the most likely cause is Lymphoma as nodes in the neck and chest are classic of Lymphoma. The specialist, having all this information still believes it is mono and he said, and I quote, I’m willing to bet my next month’s paycheck that it is mono. So he says he sends me away and says to come back in a couple of months.

I continue to finish school and I go off to Holland on a student exchange. While there for the three weeks I noticed that the nodes seemed to be getting larger, and they are no longer tender. But I don’t do anything about it as I’m not entirely sure they are growing I might be imagining it. I come home and then I’m shipped off to PEI to do the remaining 4 weeks of my Clinical Practicum. It is now June of 2006. A couple of days into Clinical I get a bad chest cold which happened to last for 6 weeks. About 2 weeks into my Clinical, while lying in bed at night I get intense pain in my armpit I’m in tears and I can’t sleep from the pain. This lasts for some time, the pain. So I take a shuttle home for Father’s Day weekend and I go to my family physician, who orders another CT, as I think I felt a lump in the armpit. I finish the rest of Clinical and come home for good. The CT confirms that the nodes have spread to my armpit, and the other nodes have enlarged in size. I wait agonizingly until July to see the Head and Neck Specialist. When I see him he agrees to do a biopsy, and I’m booked for Day Surgery on July 20th. He removes two lymph nodes as they were fused together.

Two weeks later I’m still waiting for results so we ask my family physician if he can find anything out (as the Specialist is now on vacation for over a month). He says that he’ll call the lab first thing the next morning to see of he can find anything out. The next day I’m at work and I get a phone call it’s the Doctor’s office and they want to see me that day. The call was around 8:45am, and the appointment isn’t until 2:45pm, so I’m a nervous wreck at work I actually broke down crying from fear of what I’m to hear. As I’m pretty sure I’ve got cancer I figured I had cancer since June when I found the new node in my armpit. We are in the Doctor’s office, my Mom and Dad and me, and my physician comes in. He doesn’t pull any punches and says that they found a kind of lymphoma. This was August 9th, 2006.

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

It was 2006. I was 20.

At what level of education were you at diagnosis?

Year 2 was completed of my Degree.

Do you work? Yes – Casual Hospital Clerk

What was your diagnosis?

Mixed Cellularity Hodgkin’s Lymphoma, Stage 2B.

What are your career goals?

To finish my degree to become a Diagnostic Medical Ultrasound Technologist

What were your first thoughts when diagnosed?

I was in a state of shock at first I didn’t say anything. Even though I suspected it was cancer, it was a shock to actually hear it as my diagnosis. My brains thoughts literally were Lymphoma that’s cancer, cancer means chemotherapy. That’s the point where I silently started to cry. My whole world was turned upside-down. It wasn’t until we were leaving the Doctor’s office that I broke down.

How did your family react?

My parents were strong for me, but they took it hard especially my mom. There was no real history of cancer in my family. Only a great grandmother died of lung cancer, and she smoked for something like 60 years. My sister didn’t know that the cancer was highly treatable and she thought I was dying, so she was in a state of shock at first too and she took it hard.

How did your friends react?

My friends were sad for me some of them cried, other said words of encouragement. Overall, my friends and I became closer. I lost one friend though, who was totally freaked out and he still thinks I’m dying even though I explained it to him. He just stopped speaking to me. The worst of all this was my best friend was moving away the next day and my boyfriend was away doing training with the Reserves, so I had to tell him over the phone. His world was turned upside-down, but he wasn’t too upset because he knew how treatable it was I told him many times while discussing the possibility of it being cancer before the diagnosis.

What did your treatment consist of?

Medical Side: I’m doing chemotherapy as an out-patient, specifically ABVD. I’m doing 6 cycles which is really 12 treatments over a 6 month period. I get the chemo every second Monday. I’m also to have 17 treatments of radiation about a month after I’m finished chemotherapy. The Bone Marrow Biopsy I had showed that my bones are clean so as far as I know, I don’t need a Stem Cell or Bone Marrow Transplant.

The side effects of chemo are weird at times, but the worst of it is the nausea I have severe nausea that requires me to take 5 different drugs to keep the nausea somewhat tolerable (Zofran, Stemmatol, Nabilone, Zantac, and Ativan). I can deal with all the other side effects, but this one is the worst for me personally. Other side effects include severe constipation which has lead to uncomfortable fissures and hemorrhoids. Of course there is some hair loss; I’ve lost about half the hair on my head, so I keep it buzzed short for now. It’s already started to grow back a darker colour. I get insomnia for a couple of days the week post-chemo. When I get Goosebumps they hurt on my legs, my jaw froze up a couple of times; I get heart palpitations more often, and sometimes minor headaches.

Also, I had a skin condition that is rare with Hodgkin’s Lymphoma called Erythema Nodosum. My Hematologist has only seen one other case of it, so she went and got some residents to come and look at me. Basically it is red, painful spots on the front of your legs and arms that can go away on their own, or you can take meds for it (mine went away by on its own). When I got this skin condition my right ankle also swelled up quite a bit, but also went away over time.

Non-Medical Side: Emotionally it has been a rollercoaster ride. In the first two months I was a mental mess I was having mental breakdowns and crying all the time. I was having a hard time dealing with it and I felt alone, as I didn’t really have anyone my age to talk to that was going through it everyone at the hospital is like in their 60’s. However, I found a great website (www.planetcancer.org) where I’ve met many other young adults with cancer, who understand what it is like as they themselves are/have gone through it. I’ve become more positive over time and I no longer see my cancer as a bad thing. Ultimately, I’m a more compassionate and understanding person, and I’m that much stronger and wiser because of cancer.

In which hospital(s) were you treated?

The Victoria General Hospital (QEII)

What is your current medical status?

I’m still in treatment (Feb. 2007)

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

Post-diagnosis, I’m much more appreciative of life. I think I love everyone more, if that’s possible. I don’t take for granted that I have a wonderful family, great friends, and a loving boyfriend. I don’t think I could ever express how grateful I am to have all of them in my life I love them all so much. I actually miss going to school (I have taken the year off, and I will return September, 2007). I’m much stronger now and I feel like I can deal with anything life throws at me now. I’m again a positive, easy-going person and I’ve learned to laugh at the tough things and make jokes about it. Physically I’m not really changed, other than the hair loss, paleness and red/puffy eyes. I’m not fatigued by chemotherapy. Socially I think I’m more open. Spiritually I’m unchanged I still don’t have any religious beliefs and I think it will stay that way.

What is/was the toughest part of your challenge?

The nausea is the hardest thing. Once chemo is over I’ll be so happy to get a normal appetite again.

What is/was the best part of your challenge?

The outlook I’ve gained on life – the new and improved person that I’ve become.

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

Thinking of how good I’ll feel when it’s all over to be able to live life normally again. I’m planning a trip to the spa too after it’s all done which keeps me excited.

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

Don’t sweat all the little things and don’t worry about the things you cannot change. I’ve learned to take one day at a time, otherwise it’s too overwhelming. I’ve learned to appreciate life more and the important people in it.

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

It’s no longer a bad thing it’s made me stronger and wiser. It will also make me a better Health Care Professional.

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?

When it comes to lymphoma there is no known cause, and therefore no known preventative measures. There is a link to the Epstein-Barr virus that cause mono, but it hasn’t been proven yet. Of course I think if you live a healthy lifestyle you can reduce your risk overall for cancer and other illnesses.

Did you attend any support groups during your challenge?

No.

If you did not attend a support group, why?

The support group met together on my chemo week so I didn’t feel well enough to attend. I did find support though with that above mentioned site. If a support group got together more often and on some good weeks I might have gone, and yes I think it might have helped a bit. It always helps to know that you are not alone.

How are you connected with Young Adult Cancer?

One of the nurses at the hospital knew Geoff Eaton and knew about the Retreat Yourself program, so she gave me the website. I think Young Adult Cancer is a great website, especially since it does target young adults and offers up support to them as we have different issues than older adults to deal with. I think the best part is Retreat Yourself  it is a great idea and I plan on attending the next one.