When a Man Wears a Dress

Every two months, the Pirate has to don a backless dress.

No, it isn’t for a drag queen competition; his beard would be a dead giveaway. Nor is it because he likes it; he prefers when I wear the heels.

No, the cotton little number that doesn’t-quite-do-up-at-the-back means that it’s time for medical imaging to see what the hell those tumours are doing in his liver (and to see if anymore have cropped up to scare the living daylights out of us).

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It’s a scary time for both of us (and everyone who loves the Pirate) because cancer doesn’t discriminate and has a mind of its own.  You can never really be sure whether the immunotherapy treatment is going to work. Each patient is different and their body’s response to the infusions can’t be guaranteed. Not even the experts really know how it’s all going to play out. They can only be guided by the possibilities of it all.

Immunotherapy research seems to be on the right path for melanoma sufferers. Many patients who have been on the trials have had fantastic results, Some have shown great  reductions in their tumours which has helped to prolong their lives that little bit more. Some, who because of immunotherapy, are now NED (no evidence of disease) and have a future to hang on to. However, there are others, who for whatever reason, do not respond positively to treatment at all and are living with a death sentence hanging over their heads.

We can never become complacent and take for granted the fact that the Pirate’s past two scans have shown shrinkage in all but the kidney lesion. This gives us hope that we are on to a winner but there is a small part in us that thinks “What if?” What if the drugs stop working and we never get rid of the tumours? What if we need a Plan B? Or a Plan C? Or god forbid, a Plan Z?

This is the scary part.

The unknown.

The blank space where our future lies.

Blank, not because (like everyone else) we don’t know quite what the future holds. It’s more precious than that. For people with Stage IV cancer and those who love them, the blankness signifies not knowing how much time we are going to get together.

Our dreams for the future hinge on this lifesaving treatment and what these scans show.

So, you can appreciate how waiting for the results tomorrow would be affecting the Pirate and me, his Wench. It’s an anxious time. I haven’t been quite myself and it affects me in ways that I don’t like. My anger resurfaces and the sadness hangs about like a thief. That’s when I need to remind myself to live in the now. Breathe in and out. Take one step at a time.

keep-going

If we are lucky, the scans will show everything we want them to and we’ll get to see the man in that ugly navy dress grow old and grey.

XO  The Pirate Wench

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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.

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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

 

[Life along the plank] #1 – Scanxiety

I’m sitting in the lobby lounge at Greenslopes Private Hospital with the Pirate. He’s just had his latest blood test and we are waiting for his results before his appointment with Dr A in an hour or so. You’d think I’d be used to this place by now but I’m not. It still freaks me out that we are here.

Never in my wildest nightmares would I have imagined we’d be regular visitors to this place at this stage in our lives and because of the Pirate. I thought we’d dealt with this shit when he was first diagnosed in Feb 2010 with OM – ocular melanoma, his primary melanoma – and he had an enucleation of the offending left eye. But of course, life doesn’t work that way.

Since his latest diagnosis in April this year, I’ve been battling major anxiety and regardless of his most recent good news it hasn’t really eased my mind. My ability to deal with stressful siuations is impaired at present. It really does feel as if we are being made to walk the plank and the ship we are on keeps rocking back and forth with the turbulent sea and every change in result. It’s very difficult to trust that everything is going to be alright when we don’t really know – just as we can’t predict the sea, we can’t predict the outcome of cancer.

Yet, my brain and my heart still hurt with the ‘what ifs’ no matter how many times I remind them to cease their constant hum of melancholy. It’s a struggle but I am trying really hard to stay as positive as I can with a head full of fear and anxiety. It’s no use thinking too far ahead because there is no point. I’m a born worrier. I can’t change who I am. I just need to keep breathing and hold my balance on the plank as steady as I can.

xo Pirate’s Wench

Blog Catch-up

I’ll be updating the blog over the next few nights to keep those non-Facebookians in the loop. The Pirate tends to go straight to the Book when posting updates but I know there are quite a few of you out there in social media silence who need updates here.

So if you see things cropping up that look like old news, then it probably is. If I am clever enough, I’ll back date them so it doesn’t seem so weird.

xo Pirate Wench

[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.

Immortalised Forever

When we first learned of Steve’s diagnosis, we jumped straight online to read everything we could about stage IV ocular melanoma affecting the liver. Sadly, everything we discovered was morbid and terrifying – hopeless prognoses from academic sources based on unsuccessful treatments with very few personal blogs detailing the journey of ‘survivors’. We were heart-broken, desperate for any skerrick of information that we could find to help us find ways to not only fight this cancer but to fight off the fear that this was the end.

It was then that I knew I had to start this blog, Walking the Plank, as not only a way of getting the story out there but to connect with others going through treatment of this insidious disease and to let them know that they are not alone. We needed to be a source of information, a legacy of immunotherapy immortalised forever in our words. It has also become a record of Steve’s journey, to remind us of how precious life is and what we’ve done for our future.

Now, for those of you who know me, you’ll know that I have been blogging for a long time. It wasn’t a stretch to begin writing about this but I did know that I wanted to do something special for Steve. It wasn’t just my story to share anymore.. it was his too. So, I started to think about what would make this blog one of a kind and to truly personalise it for my Pirate.

I decided that I needed a caricature of a pirate, one that looked just like Steve. However, a thorough internet search ended in fruitless frustration and I began to wonder what I could do instead.

That was when I enlisted the assistance of our dear friend in England, Chris Philp. A talented artist, Chris was the first person I thought of to help me with my idea. He listened to my suggestion and jumped on board with my idea, telling me that he doesn’t do caricatures but he does paint. I trusted his talent and of course, I need not have worried. Chris doesn’t do things by halves and several weeks later I opened my email to find this masterpiece in my inbox:

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For those who know Steve, you’ll recognise him instantly. Chris did such a brilliant job, that when I finally unveiled the picture to the pirate himself, tears welled in his eyes… and mine.

Thank you, Chris. You have put a smile on this Pirate Family at such a sad time in our lives.

My Pirate Steve immortalised forever on canvas, and now soon-to-be in the design of our blog. Watch this space!

 

x Pirate Wench