Was Ready for Bad News but it was Much Better Than Expected

Today was scan and blood test results day..

Three months since my last CT Scan and six weeks since my last blood test and Oncology visit.  Yes, my dance card is full!!! No matter how used to the process you are and no matter how calm you are about it, it is always just a little unnerving when you are:

  • Waiting to see if your current treatment is working or not.
  • Waiting to see if  your squatters are increasing, behaving or better still disappearing.
  • Waiting to see if the treatment you have just got used to (never say like!!) needs to be changed – AGAIN…

I feel extremely fortunate that I have been off chemotherapy since 1st December 2014 and for three whole months had zero treatment of any type – which was a total surprise to me that it could actually happen. It was a relief and totally scary all at the same time

  • A relief because my last combination chemotherapy (six doses of TC Taxotare / Cyclophosphamide which did a reasonable job of slowing the squatters down) really did knock me about and left me with a few long term side effects to deal with and my body really did need a break
  • Totally scary because when you have zero treatment underway when you have stage IV squatters hanging around you never know what will happen next.  Being ‘on treatment’ can be and usually is hard work and it can strangely become a security blanket for our thoughts.  Reality can be different as there can indeed be a window of time without treatment (seriously hoping that treatments continue to improve to allow more and more people to enjoy time between chemotherapies and a enjoy a better quality of life) but it shows just how sinister this disease is when you sit there and consider that you should be on treatment when the tests say you can indeed have a few months off to recuperate after some seriously toxic chemicals have been running around your body for a while during chemo.

No Evidence of Disease has never been written on any of my reports, but I have been lucky enough to see the word stable twice now in 2 and a half years (for just a little while).  I always smile and feel so very happy when one of the wonderful ladies I know are able to say they have results that are confirming No Evidence of Disease.  The downside of that is that there is usually a battalion of drugs that help to acquire that status and then helps to maintain it.  Some NED times are short and some are amazingly longer..  But the reality is that eventually, at some point it will re-emerge. Stage IV never goes away. No matter how much we wish it would.

I have become reasonably good at dealing with “scanxiety”. But I will never be totally immune to it..  I try to make sure that where possible the scan and the results visit with the oncologist are not too far apart – that way I cannot get too involved in the “what if syndrome”.  I keep my rescue remedy on hand (yes, it does make a difference). I use meditation to accept that the results are just that and I cannot change them.. It just means a new step or direction in my life of living with squatters.

I am always struggling with when do I plan to do something such as go away on a trip with my family.  As my path continues to unfold, there is only so much you can choose to undertake that is in the distant future.  The reality is, if you feel OK, go away!! a day or three, a week or two. It does not matter how long. Just a change in scenery can be amazingly wonderful for the soul.  Waiting until you finish this or that and are feel better along with seeing what the next test presents only assists to stop you in your tracks more often than not.  I have never been a very spontaneous person but I am certainly learning.

Coming up to today, I have been a little concerned at the aches and pains that have been presenting themselves and the never ending fatigue that seems to be plaguing me even this long after my last chemotherapy treatment. So I was prepared for the worst today where it was all on the move again and that the Exemestane had failed and it would become a game of “which chemo next”.  The jokers in the deck were complications arising a couple of totally non cancer related events that just happened to appear and make themselves known.  It appears that these little jokers may be a large part to my fatigue and the aches and pains? well they could be anything..  I am 49 now you know  🙂

So, it was off to the appointment I went, and was calm and expecting less than awesome news but really, it ended up being quite OK all things considered.

and the winner is……
– Bones – stable – no changes (tick)
– Liver – being just a little naughty with a slight increase in size of 2 squatters and confirmation of a new little squatter that we were unsure about 3 months ago.. but only small growth and that’s OK (whoever thought that having 3 squatters on the move by a few mm would be a good thing? well way better than 9 squatters moving !!!) (tick)
– Only been on Exemestane (hormone murderers!!) for 2 months and not long enough to know if they are helping yet or not.. BUT, my CA15.3 tumour markers dipped a little (not to bad.. not bad at all). (tick)
– Getting a new friend called Afinitor that is going to boss the Hormone receptors around a little and hopefully give Exemestane a better run at slowing the squatters..

So basically almost the same, not better, but certainly not worse.. So Yay. I can see a few days away coming up (Andrew, take notice !!) before the Afinitor starts in 2 weeks. as who knows which awesome side effects will come knocking with it.. (you know everytime I see or say Afitinor I feel as if a voice over guy is saying A…fin…i…tor in a deep, echoed voice. yes I know, I am an idiot.. but a turtle can think this stuff easily!!!)P1nk66 Mascot BB

So off the chemo hook for a few more months (hopefully more) and more time to sort out lifes other little dramas that have arrived at my door recently and remove them from the equation before I finally need to start chemo again. (and yes, chemo will always be there, just around the corner, the game is to keep it away for as long as possible in between needing to use it). Yes, playing snakes and ladders on a roller coaster ride.. that is certainly it !!!

After today’s appointment it is clear that “if” the Exemestane continues to work and “if” the Afinitor helps reduce the receptors resistance to the Exemestane and “if” my liver squatters do not decide to throw a party and if my Tumour Markers stay stable, that I will be off chemotherapy for a while longer..  Can you see the issue though, too many “ifs”.  All it will take is one of the “ifs” to fall over the cliff and it is straight back on the chemotherapy train.  All bets would be off yet again and a holiday/outing/get together would be back on the “going to do it” agenda once we settle into the routine, see how the side effects present themselves (yes, I am a true side effects princess) and the list goes on.. I can safely say that not much has been happening on the “Just Do It” List.

All the while, life is passing by the front door and not stopping in to visit very often. This is when you realise that existing has taken over living.  It is a fine balancing act at the best of times and if you add a stage IV cancer diagnosis to the mix it is interesting to say the least.

oh and these are the flowers my boys got me for my 49th birthday.. Nice!!



5 thoughts on “Was Ready for Bad News but it was Much Better Than Expected

  1. Great news Sharon! I know how you feel, I recently was told that my scans remain stable. My tumor markers have come down from 109 to 28. I have been on exemestane since Dec. & may have to go onto Affinitor next. It is so great to be off chemo. I hope you had a great birthday & enjoy a break away as I hope to do shortly. love Wendy h 67


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