This blog will chronicle the ups and downs of having stage 4 melanoma at the ripe old age of 29. It wont all be sugar plums and optimism coated moon beams, and there will probably be lots of swearing, but if you like that sort of stuff feel free to follow along. I’ve never been a fan of blogging as I am a bit of a hermit and not keen on airing my dirty tights in public. That said, I think this may help me stay connected to my community in Victoria while I’m getting treatment in Vancouver and perhaps help this all make a bit more sense to folks who haven’t had any dealings with that smug son-of-a-bitch called Cancer.
I’ve named my particular cancer Karl. Or at least the most recent and obvious of my tumors. Turns out Karl and his extended family have been in residence on the Meg Newton homestead for a while. Squatters if you will. I believe you have to squat somewhere for 7 years before it is considered your property so I guess I’ve got another 5 years to get Karl and his horde off my block. Here’s hoping. If you want to read up on the history of Karl, please do so here.
Its not all doom and gloom and some funny stuff has happened during my numerous trips to the doctors and beyond, and there is nothing like having cancer to make you appreciate every moment of your existence. Feel free to post as you will, unless its cancer or survival stats of any kind, in which case, please file them in your rectum.
The Karl Kronicles - a turf war tale
A Melanoma called Karl
Karl hasn’t always been Karl. My original lesion showed up as an ugly misshapen mole on my upper right tricep (see artist rendering right) in December of 2009. It was promptly excised in office by my GP as he told me it would be faster than waiting 6 odd months for a dermatologist to do it in their office. He cut out a wedge shaped chunk of my arm about a cm across and a cm deep and sent it off to the lab. After it was analyzed, I was diagnosed with Melanoma. I was then sent in for a resection and a skin graft to take out the rest and hopefully get clean borders around it where there was none but clean healthy skin cells. I also had about 7 lymph nodes removed.
I had surgery March 9 of 2010 and spent the next month or so dealing with lymphedema, pain, bandages that had been sewn to my skin etc etc etc. On March 20, I was told that they got their clean borders and that my lymph nodes had all come back clear. Done deal! I was officially fine and they sent me on my merry way with no further treatment beyond a head to toe check up every three months for further skin lesions and an annual blood test and chest xray to monitor any spread (more on that later).
Some great living stuff started to happen. I had a new sense of appreciation for everything around me from the colour of the sky, to the sound of traffic to the smell of blossoms in the spring.
Fast forward to May 2011 – Dawn of the Age of KARL
In May of 2011, a small pea shaped blue lump appeared under the skin in my upper left thigh. I promptly went to my GP’s clinic and presented it to the on-call doctor at the time. I was told it was a Thrombosis (a type of ‘superficial’ blood clot). I asked if perhaps it wasn’t some melanoma. I was assured that it was highly unlikely that a tumor such as mine, in my right arm would metastasize to my left leg. Too far a jump they said.
The lump grew to be the size of a chick pea by late June and I returned to the doctor’s office. I was told by another GP that it was still a thrombosis, despite its quick growth. By early August, it was about the size of an acorn and starting to stick out of my leg a bit. I went to the clinic again. The third doctor I saw said it was clearly a cyst and ordered an ultra sound. I waited three weeks for that. The ultra sound results came back and my usual GP was available to give me the result. It was a cyst they said, but an atypical one. Best to have it removed whole and then analyzed. I was referred to a surgeon who i got into see on Sept 25. The Lump was now about the size of a walnut and quick pinky blue on top, the skin was starting to stretch and it was VERY UNCOMFORTABLE. The surgeon said he would take it out on his next clinic day in the hospital – that turned out to be January 16 of 2012!? How can a surgeon only have 3 clinic days a year to do non-general anesthetic surgeries??
Anyway, on Oct 26, 9 days after my father died of brain cancer, I went to see my dermatologist for my quarterly head to toe inspection. He took one look at this thing – now about the size of a ping pong ball jutting out of my leg and told me it needed to be needle biopsied, later that same day if possible. It was not possible. I was referred to the cancer agency in Victoria to have this done and I was scheduled in Nov 21. As I waited for my test, we held a memorial for my father. My mother, brother and beloved were in the car on our way to that when we decided to name the heinous thing growing in my leg Karl with a K, seemed appropriate so we went with it. Seemed right to name a thing that was so clearly working against me, but a part of me. Also on the day of the memorial, I discovered a lump in my right breast. Or perhaps I should say that it presented it self as I suddenly had this thing the size of a peanut m&m that hurt like an m’fer.
On Nov 21, I presented Karl to the fine folk at the BC Cancer Agency. They did a fine needle aspiration biopsy and removed some cells from Karl. The doctor performing the test was my new oncologist and his first initial was K. I was afraid to ask what it stood for.
On Nov 25, I got the results. My doctor told me that Karl was in fact a LARGE melanoma. I then showed him the lump in my breast as well and he did an impromptu fine needle biopsy on that too. Sans anesthetic I might add… OUCH! He also ordered a Full body CT and a ultra sound guided biopsy of my breast lump.
On Tuesday Nov 30 I got my CT Scan. As it happens, the Breast Imaging Centre is mere feet away from the CT department so I wandered in and said that they had a set of forms for me somewhere and that since I was here now, they should just do all the tests on the spot. Inside, I thought this was terribly precocious of me to do. To my delight, they obliged and did everything ordered on the spot. BTW, Mammograms don’t have to hurt and they take about 10 mins max. Don’t be a pansy if you need one. This was when I found out that I have a bunch of metal left in my right armpit from the first surgery.
Dec 2 – My fine needle biopsy on my breast comes back clear and my CT scan shows only Karl and the lump in my breast. Huzzah! In hindsight, this was misleading.
On December 7 I met my surgeon. I was told that he was a brilliant surgeon with the sensitivity of an artist so as not to leave you with an excessive scaring. He was also a total hunk. He took on look at the now bulb-of-garlic sized Karl and said he was going to remove that as soon as possible, bumping people if he had to. He then checked out the breast lump and told me the biopsy results on that indicated cancer as well. He told me I would have partial mastectomy as well. I’m not overly vain, except when it comes to my bosom. That was hard to hear. However, if the amazons can cut off their boob to improve their aim with a bow and arrow, I could loss a measly chunk to possibly save my life. Done.
Dec 14 – I meet with my oncologist for his thoughts on post surgery plans. He says that we should pray for a clean PET SCAN and clean borders on the lesions being removed. Being an Atheist, this was not reassuring. It made me think that there was no treatment for what I had. It made me feel like he had already exhausted his arsenal. I dd not feel good about this and it made me angry.
Dec 15 – Karl came out, along with my breast lump, another one about an inch over I’d found and an infected cyst in my left armpit. When I woke up, I checked to see if i still had a right tit. I did!! And my leg felt like a million dollars sans Karl. I roared around for the rest of the day high on meds and local anesthetic.
Dec 20 – I got my PET Scan in Vancouver to see if we had removed all the cancer. That was fun times in itself – read about that here. I got the results back that afternoon. The doctor phoned me to tell me that the scan had not come back clean as hoped but that i had additional tumors that didn’t show up on any of the chest xrays or CT Scans. I am currently the home to a tumor in my neck, one in my right humourous bone, several around my breasts and lymph glands on both sides, one on the inside of my chest cavity (but not in my lungs!), one nestled in next to a rib, a 2cm one next to my left kidney in my back, one in my L5 vertebrae and one in my left leg. I started to lose track as he rattled them off. As my Dermatologist says, once the horses are out of the barn, its hard to round them all up again. The horse grazing next to my kidney is kicking alot.
Now we wait for my pathology report to tell us more about the tumors they removed. About 50% of melanomas are the result of a B-RAF gene mutation. I’m not 100% on what that looks like but what it means is that if my tumors are of this type, there is a B-RAF inhibitor treatment that effectively squelches the growth of these cells. If its not, then there is a more traditional chemo approach available. I wait, festive beverage in hand, for a bunch of folks I barely know to decide the course of my life.
Hall of Fame
Every serious endeavor ought to be informed by the intrepid explorers who came before. Here are my gurus:
Mr. Benjamin James Newton July 13 1957- Oct 17 2011
This dude is my dad. He was diagnosed with brain cancer when I was 17. He was treated and went into remission for almost 10 years before it came back and started to take over most of his frontal lobe. This kinda thing would bum most people out. My dad however somehow took it in stride. It was a shit situation and it came with a lot of unpleasant stuff attached but he approached it like anything else: This is how it is, better deal with it. As a result, I never saw him angry, upset or hopeless. He was resigned to his fate whatever it ended up being, good or bad. I never understood how someone could be so calm about such dire circumstances. Now I get it. There is little I can do to combat this disease except keep myself as healthy strong and positive in every other way. I am certainly not going to waste my time and energy on being a sullen grump. I am a bit more fiery than my father though and I will not take this sitting down as he perhaps did sometimes.
Ruth – My Gran
She was diagnosed with Kidney cancer and given 6 months to live with no treatment options as the cancer was already in her blood. Three odd years later, she is alive and pretty well with no new tumors and she is independent. I believe she has told her doctors to fuck off when they say we thought you’d die for sure. She did not take her diagnosis sitting down. She has been angrily swearing at it the whole time.
Rachel – My friend.
Rachel was diagnosed with Breast Cancer while 7.5 months pregnant and 25. Her baby was delivered by c-section and had a lumpectomy right away but did not have a bi-lateral mastectomy until after she was finished chemo . Today she and her 4 year old daughter are doing very well. She is also a fiery and feisty young person who beat the odds with a very salty vocab to boot. She told me that she refused to give up on the life she had to live after treatment.