[Update] Scan Results for Feb 2017

The stress and worry have eased.

The latest scan results have come back – good!! They’ve been further reductions in tumours and no new lesions. Dr A. is very happy. And so are we!

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Now top me up with some more cancer killing drugs.

I’ve got a holiday to Canada coming!

Cheers, Pirate xo

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[Update] More Scans

It’s been a while. I think we skipped the whole month of January. Sometimes, I just don’t want to think about it all, and hence the quiet since my last post before Christmas.

However, I’m back in the saddle… or the lilac gown, so to speak.

Today’s been a busy day.

First stop: S&N to give some more blood.

Second stop: Here at Cleveland X-ray for my scan. Scan day always brings feelings of worry, anxiety and fear for the whole family.

I’m sure the scan results tomorrow are going to be ok. Recent bloods have shown no reason why it won’t be. But you never know how cancer has decided to act.

Cheers, Pirate xx

 

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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

 

 

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.

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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

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