My Story: Jan

Meet Jan. She is a UV Skinz customer, skin cancer awareness supporter, and melanoma warrior. This month marks her second anniversary of diagnosis, and it has been a long haul of twists and turns the past few years. But she is fighting the beast, and most importantly, living each day to the fullest.

Here is Jan’s Story.

How did you discover you had Melanoma?

What type or stage did/do you have?
I’d had a “thing” in the center of my lower back for 20 years or more, I’d had it looked at by my GP over the years but it was nothing alarming.

In June of 2013 it started to change and quite rapidly. It grew in thickness, circumference and became ulcerated. I made an appointment with my GP to have her look at it and we decided to remove it. She’d said not to worry that it looked like a Seborrheic Keratosis but she was going to follow all protocols (margins etc.) and have it sent for pathology.

I remember very clearly (August 1, 2013) listening to the voice mail to call my doctor on her private number, no matter when I got the message, as it was important. I knew right then that things were not okay as I was booked to see her in 6 days to have my stitches out already. I called her while sitting in my car, in a parking lot and she apologized for having to tell me that the report came back indicating that it was positive for invasive malignant melanoma. Upon seeing the pathology report it indicated the tumor was T4b,Nx.

What followed was scheduling a plastic surgeon to do a wider excision and then the BC Cancer Agency requested a sentinel lymph node biopsy done as well. The plastic surgeon was not able to that, so a new surgeon was booked. Upon consultation with him he requested blood work and a CT scan. The CT revealed that there was something going on in in the abdominal lymph nodes and a long needle biopsy was scheduled. The results from that showed the 4 cm node (peirpancreatic) was in keeping with metastatic malignant melanoma.

I received those results, along with a big hug from my GP (she has been my doctor for 37 years), on the morning of October 21, 2013. That afternoon I met my oncologist. I sat alone, across from this man, who now had my life in his hands, and he told me quite simply that if we were not aggressive with treatment I may not be here in 6 months.

I was/am stage IV metastatic malignant melanoma (non resectable) with a now 11 cm tumor in my abdominal lymph node area.

What has been the primary cancer treatment facility involved in your care? What have your treatments been like?

Living in Canada our medical system is a little different. Once a diagnosis is reached like this, most people are referred directly through to the BC Cancer Agency. My oncologist works directly out of a cancer clinic at a local hospital. My treatments have all been handled through the Lions Gate Hospital Medical and Cancer Outpatient Treatment Clinic in North Vancouver, British Columbia.

I started the first of four rounds of Dacarbazine December 6, 2013.

There had been early signs of necrosis to the tumor from the chemo but when there was no further change I was approved to start receiving Ipilimumab (Yervoy). The treatment is limited to four rounds and after that I was referred to a radiologist to explore the option of using radiation to “kick-start” the Yervoy. This specialist was not from “my” clinic and during the consult he drew a smiling little stick figure in a dress and indicated where the 3 beams of radiation would be aimed.

He explained likely downfalls, damage and more than once asked if he had the right file based on what he was seeing. He said to me…”you realize that radiation is not going to help you, your tumor is going to overtake you and you are going to die? You have quality of life now, if I were you I would just go with that.” That was the only time I ever saw him, my oncologist saw to that. Health Canada was in the process of allowing Pembrolizumab (MK3475) for use but it was a limited trial, the timing couldn’t have been better as I just made the list and began that in July 2014. Since then I have had 10 cycles of it – my last was in March of this year.

I adopted the term “pole dancing class” for treatment days…it sounded way better than chemo lol…they were fine and for the most part I went back to work for the day or had left early. It wasn’t until the Pembrolizumab started kicking in that I had really bad days and it was the side effects that were the problem.

What would you say has been the most impactful experience from your diagnosis and treatment?

Personally, the first would be having to tell my father. He’s 95 (now) and I’d lost an older brother to Pancreatic Cancer a few years earlier. I remember the worry and changes that happened to my dad during that year. His age may be up there, but he’s very spry and young at heart. The last thing in the world I wanted tell him was of my diagnosis.

The second is realizing that while telling family, existing friends, colleagues and even strangers about my journey with cancer is comfortable…sometimes the hardest people to tell are the friends you haven’t met yet.

What organizations have been the most helpful to you?

I was very lucky to find the Save Your Skin Foundation (saveyourskin.ca) on the evening I got my full diagnosis. I immediately sent an email and asked for someone to contact me – I really didn’t know which way was up. The next day I got a call from the founder, Kathy Barnard (herself a long term survivor). When she asked who my oncologist was she let me know I was with “the guy” for melanoma in the province…that’s pretty reassuring coming from a long term survivor. The foundation is a great source of information and doctor networks – if there’s something new emerging with treatments or trials – they know about it and will help get it for you. Kath has attended oncologist appointments with me when side effects had me going sideways and I was just not myself. I know she’s done this with other patients in similar situations too, so she’s been there for a lot of us.

There are individuals that make up what I would call “my team”. I’ve not met or been under the care of anyone who hasn’t been helpful (with the exception of little Mr. Ray of Sunshine radiologist I referred to earlier – that guy’s getting a Christmas card every damn year reminding him he was wrong lol).

What has been your biggest challenge since your diagnosis?

I’d first thought this was an easy question with a clear answer…being alone (I’m not sure how to expand on that and actually put into words without sounding like a total sad sack lol). That one little word “alone” covers a lot of ground.

And your greatest source of strength?

Believing in hope and knowing that nobody else has given up on me…that’s probably a good indication I shouldn’t either, don’t you think?

Do you believe tanning or sunbathing was a factor in your developing melanoma?

In 2011 I started receiving phototherapy regularly for psoriasis. It didn’t work very well but I tried the “electric beach” prior to a vacation and don’t you know it really helped with psoriasis and my skin looked great so I continued.

I remember having a few blistering sunburns as a child.

Our family home had a pool and I spent time in the water and around the pool in summers.

Did it cause it, accelerate it or exacerbate it? Who really knows the moment when it began, but it did…and if I knew then what I know now…maybe I could have taken greater precautions to prevent it.

How has your melanoma diagnosis changed your life?

How hasn’t it? It changes the way some people see you, talk to you and treat you. Likewise it can change the way you see others. I have a life that I’d better start living and living for me. I’m finding ways to enjoy new things and experiences. Are they dramatic, risky or life altering? Maybe not – but to me they matter and that’s enough to make them worth it.

It hasn’t done much for my dating life either…can I say that?

Is there a quote, song, or book that helps or inspires you that you would like to share with our readers?

“When something bad happens you have three choices. You can either let it define you, let it destroy you, or you can let it strengthen you.”

The song that will always get me smiling is “Ordinary Day” by Great Big Sea. It reminds me of when I was first diagnosed and a dear friend talked me through some rough evenings. There was laughter, tears and probably too much wine…but there was also comfort and compassion.

Alas, my ally is no longer with us…but I’m pretty sure he’s appointed himself as my guardian angel so it’s all good.

I have a twisted sense of humor…some people don’t get it…my friend back east of 30+ years does though…I can count on him when I’m having a miserable day to poke the bear and throw me a link…more often than not it’s going to be the scene from Monty Python’s The Meaning of Life with Eric Idol singing “Always Look On the Bright Side of Life”. Inappropriate? Maybe to some, but it pulls me up and that was the point…

What advice would you give someone who thinks skin cancer won’t happen to them?

It might not…but are you willing to take that risk with something that can be so easy to prevent? Take the time to have your skin checked now. Is something iffy? Have it removed and sent for pathology. Check often for changes and do something about it…not in six months or next time. Be smarter about sun exposure and prevention.