Hubby Support
January 10th, 2018 by Janine

Boo!

Did I change career over the last month of 2017, become a lead actor in a thriller? This thing keeps creeping up from behind me, above me, beside me, from below, yelling BOO! It sends my cortisol levels sky high, makes my heart pound and brain race.  I’ll be tidying, reading, sitting, walking down the street, thinking about something or standing in a queue, essentially minding my own business, when WHAAAHHH! There it is.

I recognise it straight away. Sometimes, I even feel it sneaking up on me yet it still scares the living daylights out of me. It’s a shape shifter, a dark cloud and an amour piercing arrow. Either way it makes me gasp, scream, crash, sleep, feel defunct. It pulls the ground out from underneath me, leaves me doubting the paths taken and decisions made that previously seemed acutely clear and necessary.  It’s an expert protagonist in this production. It doesn’t take direction.  It’s a master tease, dangling hope and snatching it away, reminding me, it’s in control.  I’m the newbie on set with no Daniel Day Lewis, Dame Maggie Smith or Christian Bale style mentor to guide me.  In the meantime, it picks another corner to hide in and I jump through the roof with the next BOO!

It’s not cancer; it’s fatigue.

Fatigue and Fear

Fatigue, is really getting to me.  I don’t get enough sleep.  I wake every two hours.

I’m also scared.  Though I do know I’m alive!

I’m scared of dying young. I’m scared of missing out.  I’m scared of making a poor decision; making my condition worse or accelerating its progress.  I’m scared of being a burden.  I’m scared of not being enough for my husband, of dragging his life down (all the active plans we had). I’m scared he’ll leave me. I’m scared I’ll ask him to leave me, to go off and find someone else, to have a life with more fun, that doesn’t involve or revolve around a wife living with terminal illness.  I’m scared that I don’t and won’t again resemble my sense of who I am; an active, full of life, adventurous person who stands on mountains, travels everywhere, is strong, independent, sensual.  I’m plain scared.

Fatigue and fear.  I feel them. I get paralysed by them.  I think about them. And, yep you know it by now (if you have read my earlier blogs)..…

That’s OK. It’s OK that fatigue and fear do that.

It’s natural.  I am living with cancer and have had a gazillion sessions of Chemo during 2017, numerous biopsies, scans, endless blood tests, new challenging experiences and learnt a new language of medical intervention.  However, just because I face big challenges or can find myself embroiled in fatigue and fear, doesn’t mean I must let these factors take over this whole blog.

I can do a bit of my own shapeshifting, respond rather than react, slowly little by little unlock the paralysis and pull on a cloak of ‘sitting in all the good things’.  I can start now.  I’m not ignoring fatigue and fear.  I’m not denying their existence.  I am denying them their take over plans.  I am choosing to focus on something else right now.

Today, this blog is going to be about a huge THANK YOU and more Good News!

 thank you 490607 1920 300x212 - Shapeshifter and Thank you

THANK YOU.

Belated Merry Christmas and / or Happy Holidays and Happy Happy New Year everyone.  Thank you ALL, for reading my blog, for subscribing, for commenting, for sharing it with others who may have an interest in the journey, an interest in what has worked for me so far in managing cancer or an interest in the psychology tips and experience I have incorporated.

Thank you too, for all the wonderful cards, calls, skype time, meals together, moments and best wishes my hubby and I have received over the holidays.  They are so appreciated.  Every single one.

I firmly believe that all your support and encouragement has contributed to my good news. I have felt loved, helped, contained, hopeful and normal at times when things were far from normal.  THANK YOU from the bottom, to the top, of my heart.

 

THE GOOD NEWS.

My December 2017 results are great.  In addition to those mentioned in the previous blog, titled 48, my recent pet scan, bone marrow biopsy and MRI have overall been extremely positive.  Of the four lesions I was diagnosed with, only ONE near L5 in my lower back took up glucose during the pet scan, indicating active myeloma.  Even this lesion took up significantly LESS glucose than it has done in previous scans.  Yeah Baby!  How good is that?!

I told those tumours they were wasting their time hanging about and I am taking this as evidence that they have been listening and reassessing their landing page!  It is wonderful to read the line in the report that said ‘There are no obvious focal uptake abnormalities in the brain’!!  Let’s hope no un-obvious ones decide to make an uninvited guest appearance.  They’d be about as welcome as a Harvey Weinstein type right now!

There’s more.  The bone marrow biopsy did not show any active Myeloma in my blood or bone and, wait for it…my MRI did not show evidence of any new lesion/tumour.  Yee Ha!

I do have one caveat; I have some mild degenerative disc disease and loss of height and hydration between vertebrae in my spine; my back is looking a bit older than my years.  It is unlikely that I can particularly do anything to repair damage.  I can exercise and ensure by back remains strong, doesn’t antagonise the nerves around L5 and otherwise prevents my degeneration from becoming worse unnecessarily.  I will check with the physio about what else, if anything, may be possible.  It was also wonderful to read ‘the spinal cord returns a normal signal and the brainstem structure is normal’.

Being pragmatic, I am remembering that Myeloma is tricky.  It will come back.  It can also be a bit lazy and not show up at times in these results. It can take a rest or be working out how to manifest itself in a new way in my blood and bone.  HOWEVER, TODAY…

I’m looking on the bright side of life! (How many of you began singing this line? I can’t help myself)

A helpful position to launch from; I start 18 more months of Chemo this week – the maintenance phase on the clinical trial.  Let’s see what this brings.

This is infinitely easier to do with wonderful friends, family, readers, well wishes and my so far ‘beyond amazing’, hubby.  I appreciate all of you.  I really do.

 

 

February 2017 Hat

February 2017

December 2017 Hat

December 2017

THANK YOU.

BRING ON 2018.

 

Acknowledgements

Images; Hands by M & T. Me (February) by Dad. Me (December) by Me.  Thank you image by Tumiso @ Creative Commons (free for commercial use, no attribution required); 

© 2018 Janine Hayward www.psychingoutcancer.com.  All rights reserved.

 

Posted in Psychology for Cancer, Results Tagged with: , , , , , , ,

para protein
December 6th, 2017 by Janine

What a year! I turned 48, I was diagnosed with cancer and I’ve completed 48 chemo sessions. I love the number 48; it seems so symmetrical to me (I love a bit of symmetry).  Now ‘48’ has a WHOLE new world of associations!

Warning…I have happy news, and, I’m going to talk about toilet rituals.

First, the rituals.  

This may seem very strange to those of you who have always been super careful about hygiene when using public loos.  In my defence, I have rarely worried about these things because my childhood in New Zealand was filled with non-traditional toilet arrangements. When you are fortunate enough to spend all day at the beach or walking in the bush or driving long stretches of deserted road or camping in remote sites you tend to get over yourself quite quickly about going to the loo wherever and however.

Doing your business quickly behind a tree, rock, or in a smelly long drop with minimal paper or alternatively leaves or seaweed, is not that unusual.  Worrying about being seen was always a bit more bothersome than worrying about bugs, microbes or possible infections!  The upshot is; I have never worried about using public loos, ‘catching anything’ or having to use disinfectant.  I just focussed on washing my hands well.

Waiotauru Hut bush toilet 225x300 - 48

Now that my immune system is compromised it’s another story completely….though maybe I’m being a bit anal? (pun intended)

In the Chemo Day Unit, patients are asked to ‘wipe the loo’ with anti-bacterial wipes before and after use.  I recently discovered I had developed a wee ritual…Take a wipe, clean toilet seat, fold dirty side in, use clean side to wipe toilet handle, tap, hand wash dispenser, door lock, door handle. Dispose of wipe in bin.  Use loo.  Wash and dry hands properly – you know the 8-10 step process (depending on the poster).  Take new wipe and clean toilet.  Goodness knows what bugs I could pick up if I didn’t do this; don’t tell me!

Anyway, this is a new ritual in my life and once again one that seems to consume a little more of my available time and life though hopefully is worth it.  It seems so, so far, as I have yet to pick up any major nasties despite lower immunity and chemotherapy for 9 months now.  This ritual has now made its way out of the hospital and into public conveniences.  AM I being anal?  I’ll let you be the judge!

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My News

…is happy, positive and hope-FULL…I’m very grateful for it and its effect; a reaffirmation of my faith in my medical team, the drugs and my health and life choices.  The Myeloma presence in my body has decreased further in the last few months… It’s down to 1 g/l (42 g/l at its peak) and a may be yet to plateau.  Yee ha!  Not only that, the serum kappa light chain results are 1.75 mg/l, backing up this great news and described as  ‘excellent’ by Dr L.  On top of that my liver is doing well. My Hb (Haemoglobin, the protein found in the red blood cells that carries oxygen around) level is back up to 121 g/l so I no longer need to consider taking EPO (yes, the cheaty cyclists’ drug of choice! I’m a tad disappointed.  I had wanted to experience how energised I’d feel!) While 121 g/l is lower than the desired normal levels (125 g/l plus) it is great for someone with Myeloma. My kidneys are also doing OK for someone with Myeloma, my Creatinine is 69 umol/L and normal level for women is approx. 45 -90 umol/L (I think; there seems to be some debate!).  Lots of good, great news, here. Dr L delivered these details and then reminded me to keep drinking 2-3 litres of water today for kidney care.  I imagined my kidneys; bloated, water-logged, bean-shaped balloons, wrapped up in clouds of cotton wool, floating about, relaxed and without a worry in the world.

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I’ve had yet another bone marrow biopsy and pet scan (what effect does three doses of radioactive sugar chasing gunk in a year have on one’s body? I guess I’ll find out!).  I have an ear numbing full body MRI coming up in a fortnight.

Let’s hope they show (or don’t show lesions at all) that lesions are further dissolved and there are no new uninvited guests!!

What a year.

48.

One number I’ll never forget.

 

Acknowledgements

Images: Me (graphs va KCH), Long Drop – Sarang (public domain use permission granted)

 

© 2017 Janine Hayward www.psychingoutcancer.com.  All rights reserved.

Posted in Chemotherapy for Myeloma, Myeloma Treatment, Results Tagged with: , , , , ,