Do you remember running with your brothers and sisters through the fields of wild flowers, the warm breeze flowing through your blonde hair, blowing flower petals into the wind, making cutty grass bivouacs, lying in the long grass as you ground yourself and become one with the earth, looking up at the sky trying to make out the pictures the clouds are drawing for you?
It was the 70’s, I was normally topless, wearing towelling shorts and bare feet. We would roam all day between the huts Dad built in every corner and the beach where Dad built our canoes (that sunk) until the echo of mum’s cowbell telling us dinner was ready. It wasn’t unusual to be told the neighbors were upset again because we’d been caught riding their wild horses (no gear, especially no helmets) until we were bucked off. Life was romantic and wild.
The 80’s was a slip, slop, slap of a time. I loved to slip on a bikini, slop on the coconut oil and slap myself down under the beams of that warm delicious sun. It took a while, being my natural skin color was pale blue but roll around like a patisserie chicken and you brown off eventually. You smelled good too!
Then the 90’s drew me in with its sunbed’s. Rumor was, it was better for you to get brown from a sunbed before the sun’s rays burnt you. Until the sunbed burnt me.
I woke up with my sheets bloody and my right shoulder blade the culprit. It was just a sore that wouldn’t go away. Crusty with infection. Antibiotics, cream, nothing healed it. Nine months later, the doctor and I decided to take it out. I will always remember his face when I went back to get my stitches out. I couldn’t understand why he had tears in his eyes as he told me I had Nodular Melanoma. I smiled and said “it’s okay, you got it out didn’t you?”.
Sentinel Node Biopsy – big words. Blue dye with a radioactive tracer is used to identify which lymph nodes would be most likely affected, had the cancer spread. They removed the lymph node under my right arm at the time of my surgery to make sure they got all the cancer in the first instance.
My surgeon, bear with me, I get great pleasure out of calling him “MY” surgeon. He was very serious when he moved me to the top of his surgery list and as I handed him back the signed forms he noticed my little note saying “while you’re in there, can I have a C cup? “Just joking” I laughed, “not really” I whispered. He told me he would give me a pretty scar. He is the perfect perfectionist. 18cm long shark bite, you can hardly notice it now.
Five years of three monthly check ups, and on my very last one. I was excited because they were telling me I was being released from the system. Just as I was putting my clothes on, I mentioned the little lump under my skin, under my right rib cage that Craig had discovered recently.
My surgeon whipped it out, along with the other lump that had popped up in my left forearm. Metastatic Melanoma meant a PET scan in Waikato where you are injected with a number of substances, one of which makes you think you’re wetting your pants and you’re photographed three-dimensionally. Cosmic.
Looking at those colorful images can be quite intriguing until you notice they don’t Photoshop out the saddlebags. It showed two tumors on my lower left lung, one on my right hip and one on my right thigh.
Tonight was my 7th slice and dice in the past 6 weeks and to use my surgeon’s words “it was epic”. It was quite fitting that the music channel he had playing was some kind of movie track from the Hobbit or the like. I felt like I was starring in my own drama. He was knuckle deep searching for that little critter. Tomorrow brings a trip to Waikato to see the cardiothoracic surgeon about my lungs.
FeK-Hole. That is what it is called when you have a Ketamine reaction. A Hallucinogenic drug that alters your mind, giving you an out of body experience. Also used as a horse tranquilizer. I reckon you would have to be an A-hole to want to experiment with that kind of drug. To be fair, it was prescribed to me (legally, intravenously) in ICU so when I had an allergic reaction, where my heart monitors went cray-cray (going into a K-hole) the anesthetist was only a phone call away to prescribe the antidote that saved my life. Whoa Nelly, back up a bit.
Ok, so if I look through my rear view mirrors, I can take you back to 16 December last year. Days before we had a life changing decision to make: “to apply for the drug trial (Keytruda) or have a Lobectomy (not to be confused with Lobotomy). Try saying that on Ketamine! With intense discussions and as much research as our minds could bear, surgery it was. The 16th had me being prepped in a private hospital that felt a lot more like a five star hotel. Waking up in ICU was painless enough but I still had the epidural in and wasn’t required to move. It wasn’t long before that was removed and the pain was immediate and fierce. So much so, no amount of morphine could cut it. Hence the Ketamine.
Three days after surgery I was discharged. I knew I wasn’t ready but there was one very persistent doctor walking the wards repeating “you ready to go home yet?” I kind of wondered if I must be a hypochondriac to want to stay longer. This only meant I was back in Tauranga hospital the next day with a suspected collapsed lung. Moral: Go with your gut (or lung, heart, which ever organ may be shouting loudly at the time).
Home with rest and recovery and Opiate painkillers “said” doctor above prescribed. I must be a naive patient because I took them religiously without questioning or researching side effects. I’m about to say a toilet word so if you think you might get offended by this, LOOK AWAY NOW.
I’m talking about the crippling sort. Where you have to use every kind of remedy thinkable just to get even the slightest relief. Mm hmm it ain’t pretty. I can only say this in hindsight now; these are some natural ways to ensure constipation is not on the radar if painkillers are ever prescribed: LBS II and Magnesium.
After experiencing the agony of constipation I decided to stop taking the painkillers, cold Turkey. In bed with itchy skin and a morbid melancholy where I cried as I thought about my mortality, I was lucky enough to have had the sense to call my girlfriend who has had lung surgery before and is very patient with me. She nursed me through and put me back on the drugs with a good finger pointing to go back to the doctor so he could “manage” me off them. Another valuable lesson to be added to the many through this journey.
Feb 25 2015
Kat’s Life Corrupted
One of the ugly things about Melanoma is its ability to travel at a rapid speed like a criminal on the run. I wish I could send out a Police warning to all my internal leaders saying “Melanoma is on the move again, witnesses last spotted it at Left Kidney, Lung, making an appearance around left arm in the elbow region before creating havoc under tongue. Forensics confirmed its DNA was found in all stop overs. Please lock your doors and do not open for anyone. Melanoma has many disguises and is clever at manipulating its way inside. Do not approach under any circumstances, Melanoma is armed and dangerous”.
The news was not what we were hoping to hear but I have been given another opportunity to apply for the new and exciting drug trial.
March 13 2015
Being referred to Waikato Oncology meant the first step to jumping through the hoops for getting on this drug trial. We had our first consult with my new Oncologist yesterday and I somersaulted through the first hoop and landed on my feet to sign the paperwork. However, more hoops to jump before I’m accepted. This trial is brand new with new doses so although there are side effects to be expected, they are a lot less severe than having to go through Chemo. If I respond well, I will have the chance to be treated for 36 months. This means going to Waikato Hospital one day a week for six weeks, then every three weeks for the next 12 weeks etc. Every specialist on the planet seems to be extremely excited about this new trial. To fit the criteria, I have to have a tumor over 1cm to enable them to monitor it. The one presently on my lung is not quite there yet and wishing it to grow quicker and bigger is a conundrum and makes my head spin a little. Yet, if I don’t get on this trial, the chances of me having another opportunity are very small. The best thing I can do right now is jump head first every time I see a hoop.
March 21 2015
After passing the initial screening including “unremarkable breasts” and Neurological being “grossly normal”, apart from feeling slightly deflated seeing this in black and white I’m pretty darn blessed right now. After next week’s screening and CT are complete and if I still qualify, I start treatment on 8th April (with weekly check-ups) with infusions every 3 weeks for 4 cycles and then an ongoing treatment for up to 2 years. And so it begins.
March 31 2015
Bummer! Haven’t met the criteria for the drug trial. Generally speaking we’ve been positive and in good spirits but I wonder sometimes if it is because we have come to rely on one of our most well developed mechanisms -denial. Not the best thing to do when it is important to face reality. I don’t know if it’s denial or pure enthusiasm but I was absolutely positive I had this one. Unfortunately, the reality is that I have not met the criteria in order to be accepted on the drug trial. So we (Craig and I) come to the crossroads of “to do or not to do” Radiation, chemo-therapy or more surgery. At least we can make decisions now without the anxiety that being in Limbo creates.
April 18 2015
I remember fond childhood memories of when the fairground would come to town. It used to be at Coronation Park at the Mount and as kids we would walk down from my grandparents’ house with enough money in our pocket for one ride. The sweet smell of candy floss, crazy dodgem cars with their sparking overhead lines and each ride lit up with dazzling colorful light bulbs. It was Las Vegas to a country kid.
I loved the atmosphere as I watched roller coaster on their old fashioned unpredictable tracks and the rowdy music pierced by the occasional short scream of a terrified rider as the Octopus arms went higher into the air. The Octopus was the most exhilarating ride for me. It would take us up quite high where the view was spectacular and you’d have a brief feeling of freedom — then suddenly falling downward we’d start screaming. Up and down, up, down. I always wanted to go again. It was intriguing that a ride could make me so frightened and yet so excited all at the same time.
Sometimes things in life happen that we have no control over, but there will always be another corner, another hill to climb or descend…life goes on. I have friends who are on this ride with me. Some who are experiencing similar uncertainties, ups and downs. As difficult as these situations often are, I do not feel alone with a lot of support around me which gives me the power to no longer feel like just a passenger on a ride waiting to see if tomorrow will bring uphill battles or an exciting ride downhill. I know there are a lot of people working very hard behind the scenes to help me have another opportunity to apply for the drug trial I so desperately desire to be on. While parking the car for my Oncology appointment, I received a phone call from the trial nurse explaining that two more openings had become available. My Oncologist was very excited to tell me we are pushing forward with another go at the trial. We were also informed I now have multiple lesions throughout my lungs. We just need one of them to be big enough “measureable” in order to qualify. Next week I am back to Waikato to start the process again.
So instead of being strapped into one ride, I choose to call this a voyage, travelling from one place to another. All of these challenges are just a part of the journey that we experience while all the specialists are doing their best to navigate and map out the safest directions for me to travel.