The Next Challenge

Friends and colleagues of mine who know of Steve’s advanced melanoma, often ask me how he is doing. When I tell them that he is doing really well: working full time, going to the gym daily and living life to the full, they seem surprised.

Most don’t expect that a man with advanced cancer, who undergoes treatment fortnightly, can still live a relatively normal life. Most, of course, don’t really know the kind of man my Pirate truly is.

“Fill me with the good stuff.”

This has become his mantra when he checks into Hotel Greenslopes for treatment in the ‘green chair’. Although, he admits to never being really used to having the cannula inserted for his infusion, the Pirate sees treatment day as being another step closer to NED. His positivity is inspiring to so many, but know that he does have his down days, when it all gets too much. It doesn’t last too long, but I know that having cancer is in the back of his mind at all times and sometimes, he just needs to forget about it.

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So, of course, when I told people that my Pirate was heading south on his own to complete a fitness challenge, I received incredulous looks.

Who’d have thought that just two days after treatment, the Pirate would be in Sydney competing in the Men’s Health Survival of the Fittest challenge?

I must admit that I was a little concerned when he said he wanted to give it a go. I was worried how the stress and strain of such a challenge would affect him (and if I am really honest, I didn’t want him to go without me!) However, I know my Pirate and, when he sets his mind to do something, nothing and no one can stand in his way.

So, on the last weekend of the school year, he hopped on a plane and made his way to Sydney for a weekend on his own, to forget that he was living with cancer.

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After completing 50 obstacles over 10 kilometres in under 2 hours, the Pirate’s sense of achievement had been boosted; his pride had been topped up again. He was so pleased with himself, so happy that he didn’t let cancer get in the way of achieving his goals and living the life he has always wanted.

And so was I.

xo, Wenchie

 

 

It’s been a while

It’s been five weeks and three Opdivo treatments down since coming off all meds to mend my liver. On the whole, the fortnightly treatments have been going well except for the past two weeks. I have noticed a big change in my energy levels and appetite since coming off the steroids.

After a visit to my oncologist Dr A on Thursday to explain how I was feeling, she explained that the cancer treatment can cause problems with the pituitary gland.

pituitary-hypothalmus

Now, this little pea-sized ball at the back of the brain has an important role in the production of a range of hormones that each work their magic in the body for growth, development and daily functioning. According to Dr A, my lethargy, lack of appetite and general feelings of malaise are a result of an issue with the production of a particular adrenal gland hormone – cortisol.

Cortisol is one of the most vital hormones essential for life. It helps the body to regulate stress and contributes to the healthy functioning of the immune system, blood pressure, blood sugar levels and responses to inflammation. From the symptoms I was exhibiting, Dr A wanted to check my ACTH levels so off to S&N for yet another blood test the next morning.

We weren’t expecting the results for a few days, however, on Friday afternoon I received a call from Dr A explaining that S&N had got in touch with her as soon as they found out my results.

We discovered that my cortisol levels we’re actually undetectable, which completely supports and explains the way I’d been feeling. I don’t want to underplay this at all, but when the body has a cortisol deficiency, it can be life-threatening if not detected early. Treatment, in the form of synthetic cortisol replacement, needs to begin as soon as possible.

So, another drug has now entered my body. A daily does of hydrocortisone since Friday has had an instant effect and my energy levels have almost returned to normal and my appetite is slowly improving.

Thanks to my beautiful wife for doing a bit of extra work around the house when I haven’t been up to it. Xx

Now that I’m feeling better, I’ve decided to challenge myself and compete in the Men’s Health Survival of the Fittest on December 10 this year. I am going by myself to compete in a 50 obstacle 10km urban fitness challenge in Sydney. Call me crazy but it was just something that I wanted to do. Stage IV melanoma is not going to stop me from living life.

The ups and downs of the cancer journey are challenging but I’m determined to overcome this disease. I look forward to treatment, my next one is this Tuesday, and my upcoming scan in a few weeks time.

Love, Pirate. xx

PS. Ensure you live a healthy and happy life and do something that challenges your mind and body.

 

Sources:

The Pituitary Foundation. (2015). Retrieved 5 November 2016 from https://www.pituitary.org.uk/information/what-is-the-pituitary-gland/

Endocrine Society. (2016). Retrieved 5 November 2016 from http://www.hormone.org/diseases-and-conditions/pituitary/overview 

Merck Sharp & Dome Corp. (2106). Retrieved 5 November 2016 from http://www.msdmanuals.com/en-au/home/hormonal-and-metabolic-disorders/pituitary-gland-disorders/overview-of-the-pituitary-gland

Department of Health & Human Services, State Government of Victoria, Australia. (2016). Retrieved 5 November 2016 from https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/hormones-cortisol

Pituitary Network Association. (2013). Retrieved 5 November 2016 from http://pituitary.org/knowledge-base/disorders/hypopituitarism

 

[Update] My Old Mate, Liver and the Brisbane River

This weekend was awesome – I spent quality time with my beautiful pirate wench, had dinner and drinks with friends and enjoyed being a tourist around our beautiful city, Brisbane.

Today, however, has been quite the opposite. It’s been a bit of an emotional roller coaster. To start the day, I rode the free City Hopper ferry into the CBD for a quick gym sesh before my blood test and then picked up some coffees and breakfast for my beautiful wife still snoozing in our hotel before heading back into the CBD to see a few customers before my 10am appointment with my new specialist, Dr B at Greenslopes.

Rewind to last week when I had an urgent appoint with my oncologist Dr A about my liver levels. They had been climbing steadily without any particular reason (well, besides from the fact that my liver reacted badly to the #Yervoy treatment I can now no longer have.) During this meeting, I was advised that I now needed to see a liver specialist, who just so happens to be my gastroenterologist, Dr B. Apparently, my white blood cells were going to crazy town in my liver, causing all sorts of issues and I needed to be on meds stronger than steroids (ones they give to transplant patients to avoid organ rejection) to ensure that my liver could push through this and get on the road to recovery.

Now, fast forward to today when I finally managed to see Dr B, my – now – liver specialist or hepatologist. After two blood tests last week to check how the meds were working, things weren’t going so well… levels were up to the highest they’d ever been but on the flip side, the liver was still functioning and producing the proteins, etc that it should be. My old mate, Liver, was a bit slow to react to the new meds, so by the time I saw Dr B, it wasn’t looking good.

As you can imagine, I was a bit of a mess this morning, even complaining to Dr B that she always makes me cry! My mind was taking me to places I really didn’t want to go but when you know that ever increasing liver levels could potentially mean liver failure, I was devastated. I said to Dr B that if I something was going to take me out, I didn’t want it to be my liver now. It can’t be now.

Thankfully, I do have the best doctors in the world who are so reassuring and won’t let me think too far ahead. She was most concerned about seeing the results of my blood test earlier that day, which would have given a clearer picture of how well the new meds are working.

So, after feeling pretty shit for a few hours, the latest report at 5.30pm this evening has finally shown the kind of progress we needed to see – my liver levels have decreased sufficiently to demonstrate the efficacy of the new meds. What a relief! I texted Dr A with two little words ‘Thank God!’ when the results came in. I instantly felt more positive again and it didn’t feel as if my future was so short anymore. I gained it back again.

I know many of you have praised me for my positivity throughout this whole shit-storm. It’s hard work trying to stay focused and push back the negative thoughts about stage four melanoma. Sometimes I just need a big boo-hoo and let out all the frustrations, fears and worries I have. I don’t do it publicly, not because I don’t want to show this side of me, but purely because I do want to be as positive as I can to encourage the same from you. Not to say that you can’t worry, or feel sad, or be angry about this fucking cancer inside me… but that positivity breeds positivity and it’s the only way the Pirate wants to be.

World’s Collide

It really is a small world.

Last night, the Wench and I were spending a wonderful evening with dear friends when, as it does, we began talking about the latest news about my treatment. I happened to mention my oncologist’s name, which made one of our dearest friends (and old school mate) blink twice and ask for clarification. The look of recognition on her face made us laugh and search through another mutual school friend’s Facebook page.

We discovered that my wonderful oncologist, Dr A, is a woman that I graduated high school with. Of course, I didn’t remember her at all and it took me a while to place her; I needed to  look back at a school photo to jog my memory.

My cheeky Wench claims that I was probably too busy smoking durries down the back of the school to know who anyone was, let alone one of Brisbane’s future medical leaders. 😛

What a blast from the past, I can tell you. It’s amazing to think that all those years ago in a Logan high school, one young woman was paving her way to a career that would one day help to save my life.

[Update] Round Three

He doesn’t say much, my quiet man, but I wanted to let everyone know how he is doing after his third treatment.

The Pirate has been an absolute champ, staying strong even with tremendous headaches killing his positive vibe at times. We believe that the treatment is causing inflammation of his sinus, which is causing the head pain, so have begun a series of complementary medicines (tissue salts, nasal sprays, hot/cold compresses) to tackle it head on, along with the steroids and pain relief prescribed by his Dr. Yesterday was a shocker but thankfully, he is much better today.

Please make sure you send your love to The Pirate to let him know that you are thinking of him during the tough times.

xo Lane, the Pirate’s Wench

‪#‎fuckmelanoma‬ ‪#‎melanoma‬ ‪#‎opdivo‬ ‪#‎yervoy‬