Thanks, but no thanks, cancer.

There are so many different ways of handling a cancer diagnosis.  There are more ways than there are people who have or have had cancer, in my view.  As each one of is individual, each approach is unique.  It might be similar to many others, but it is essentially unique.  Why more ways than people?  Because this varies even within ourselves.  Much depends on where we are in the cancer experience.  In the three years eight months and 22 days since I learned I had cancer, I have veered between the “WTF – Cancer??” to “warrior” to “cancer rebel” to “advocate and activist” to “inspiration” and many more.  Each is valid to the individual and to where they are in the experience.  What is not valid is suggesting that one approach is right and another wrong – each must be respected even if it very different to our own approach.

One approach is to see cancer as a gift. Diagnosis of a critical disease does often bring a sense of gratitude and an accompanying “carpe diem” pair of spectacles.  And that is fine, but the carpe diem is as far as it goes for me personally.  Thanks, but no thanks, cancer.

I was in a sound sleep the other night. I must have stirred a little, as I was pulled abruptly to my senses by a familiar tugging and tightening in my calf. Yet another leg cramp was forming. Much as I try to relax the muscles before it spasms, I can rarely prevent the cramp from taking hold.  I know that if I can get out of bed and straighten my leg with the floor underneath then it will help, but lifting my leg off the bed makes the cramp worse.  Sometimes I can put up with it, but other times the pain is so excruciating that I hear animal like noises coming deep from my gut.  It is agonising for me and distressing for hubby J as he is disturbed from his sleep and tries to help me relax the muscle. The cramp the other night was one of the worse I have ever had.  My calf was in a complete spasm and even my foot was locked like Barbie’s, – my toes splayed in different directions.  I tried to move off the bed but was completely unable.  It seemed like an eternity and took a horribly painful manoeuvre to get onto the floor and start to ease the cramp. I was finally able to hobble and the cramp slowly abated.

The spasm had been so severe though, that the pain stayed for several days.  These cramps are a likely side effect of Femara (Letrozole) which I have been on now for nearly a year, following the switch from Tamoxifen.

Throughout that following day, I walked as if I had just celebrated my 95th birthday and was both immobile and incontinent.  My right leg was tender and painful from the cramping and it struck me just now much the Femara side effects have been getting progressively worse too.  I am increasingly stiff, move awkwardly and have pains in my elbows, fingers and both knees.  I yearn to be able to move freely and resent this debilitating impact on my wellbeing and the constraints on my mobility.  The days following this particular cramp session saw me walking very gingerly and awkwardly indeed.

Thanks, but no thanks, cancer.

There have been a number of unwanted “gains” from cancer – we are too familiar with Twang Arm, Captain Paranoia and of course the gaping void and long scar which is where my left breast used to be.  But there are many more.  Some are side effects of current medication, some are the after effects of the various treatments.  They are all unwelcome, but part of life.

Thanks, but no thanks, cancer.

I have a host of unexpected after effects – brittle and constantly breaking nails, highly sensitive soles of my feet, skin which reacts angrily to as much as a wrong look, or sticking plaster or stray hair, a digestive tract which remains sensitive following the ghastly gastric effects of chemo.  I still have the remnants of peripheral neuropathy in my finger tips (barely noticeable but just there) and my numb toes.  The numb toes which were the likely cause of my recent fall in March.  I often trip just walking around the house.  One of my colleagues recently remarked that I was now walking more clumsily.  I have difficulties with memory too, my personal memory card seems a little stale and has particular difficulty with numbers.  Finally “chemobrain”- a level of cognitive impairment “thanks” to chemotherapy which is now more recognised and understood to be very real.

Thanks, but no thanks, cancer.

One post diagnosis gain is the regime of daily meds I have to take.  Before cancer I used to pop one little blood pressure pill daily, to counter the family trait of high blood pressure which hit me suddenly when I hit the age of 40.  Now I have a whole colourful smorgasbord of meds throughout the day, some of which interact with each other, some which have side effects and which require another med.  Sigh.

The Smorgasbord

The Smorgasbord

As soon as I wake, usually around 5.30 am I have to reach for med No 1.  I have to take a synthetic thyroid because I have zero thyroid function.  I have no thyroid function because chemo zapped it into non-existence.  I have to take two small tablets and then I usually get ready to head out for my swim and cycle. Around an hour and a half later, after breakfast I have the next round of treats.  I now take a combination of 2 meds to keep my blood pressure stable.  One of these interacts with the thyroid med so I need to leave at least an hour between the doses.  Very handy if my morning routine has to change for any reason, like travelling, working away or if I were to have a longer sleep at the weekend.  Fine.  In the evening, I have a supper and bedtime cocktail blend of warfarin and Femara.  The Femara has replaced Tamoxifen which tried to do away with me by clotting my lungs with a sprinkling of clottettes.   The warfarin is the other gift from that little embolic episode. And my nightcap is a massive horse-tablet sized calcium supplement to counteract the effects of Femara which likes to deplete calcium from my bones.

Thanks, but no thanks, cancer.

I did not exactly enjoy being on Tamoxifen.  Would anyone? I felt a general weariness and also had terrible leg cramps as well as the legendary hot flushes.  I was glad to wave good-bye to it though and had hoped that Femara might be a little gentler.  After all, Femara and even Letrozol sound like more pleasant names than Tamoxifen, surely?  Unfortunately not.  As I approach my first anniversary since the Femara – Gecko union, I have had to face up to the fact that I am gradually feeling worse and not better.  I have been putting up with joint pain and stiffness which has been gradually but clearly increasing.

Thanks, but no thanks, cancer.

I was due my regular blood draw for monitoring warfarin effectiveness and clottery levels this week, and finally decided just to ask Dr O about the worsening pain and stiffness.  As soon as I mentioned and gestured about the pain he sighed and said he was pretty sure it was Femara.  He said that he has a few patients on Femara and even the way we describe the pains is pretty much the same. He asked me how long I have been on it, and when I told him that I have had 3 years now on either Tamoxifen or Femara he screwed up his face and said that they were truly horrible meds and that he could not wait for me to get to the five year point and have “freedom”!  Which was incredibly encouraging to hear.  Partly the validation that he recognised how draining and debilitating these side effects are, but even more so, that perhaps even after a couple of years, that I might actually start to feel better.  I had not realised that I have been taking this misery for granted and had pretty much accepted subconsciously that it would continue and just get worse.  For ever.  He ran a few extra blood tests – just to make sure that he was not missing anything, so calcium levels, potassium and liver function were all checked.  And very happily, all came back nicely within the regular ranges.

However, he has recommended a Fish Oil supplement to help ease the joint pains.  Another colourful addition to the smorgasbord.  And that brings with it another consideration.  So many of the meds interact with each other they have to be carefully timed and it starts to get really complicated. The meds do not just interact with each other, but also with certain foods.  Warfarin is less effective when you take wonderful cancer-busting greens and other Vitamin K rich foods.  And other healthy foods like cranberry can cause haemorrhaging – all of which curtails nutrition options and takes so much control away from me in ensuring I have as healthy diet as possible.  So contradictory and counter-intuitive.

fish oil

I also ranted on my Feisty Blue Gecko Facebook page that evening, just to see if I was alone and how others dealt with this.  I was again reassured that I am far from alone, and my weariness with the side effects was valid.

So I have to confess to being grumpy and crabbit at the moment.  I am so over this cancer crap, and the fact that I cannot sweep it to the side as if it had never happened.  And that is not beginning to take into the account the whole “No Evidence of Disease is not the same as Evidence of No Disease and this beast will continue to haunt and taunt me”,  but purely dealing with the realities of the here and now of life following diagnosis.

Don’t get me wrong.  I know I have a great deal to be thankful for and I AM truly thankful.  I know I make more effort to value time and carpe the diem.  I still make a “five sticky plan” for weekends, aim to maintain a work life balance as far as possible in this incredibly demanding context of change and more change, and play (subtly I hope 😉 ) the cancer card if that is too threatened.  I have a beautiful morning routine which is largely “thanks” to cancer in that I know that exercise is known to be a factor which can play a part in reducing recurrence.  I have my Wish Bucket full of starfish,  kangaroos and funky nail art, and an update on that is coming very soon too.

I am also planning an escapade.  The year has been one of my toughest, so a little escape for creative and healing time is planned next month.

And of course, cancer gives me HEAPS of material and thought which makes its way into blog posts!

So there are a number of things from the cancer experience which I acknowledge have had a positive influence. And apart from cancer, I have a great deal to be thankful for – living and working in this part of the world being just a starter.

thank you starfish

But cancer?  No, I do not think the day will ever come when I could ever say “thank you” to cancer.


Happy Endofchemoversary – another Landmark Day!

I have marked a number of Landmark Days over the past months, but this one feels rather different.  It is the first one to mark what feels like moving forward from the diagnosis.  I know that finishing the chemo course was only part of the story, but chemo was a long haul and one which frightened me enormously.  I approached each cycle with nervousness, fear and trepidation tempered with gratitude for the cutting edge treatment.  The 8 cycles started days (18 to be precise) after my mastectomy, when I was still getting used to my diagnosis.  The 8 cycles were to take the best part of 6 months, and take full control of almost every aspect of my life during that time.  I remember sitting in Dr W’s office when he went over my pathology reports just after my surgery, telling me that chemo would take at least 24 weeks.  Around 6 months.  At that time, I really felt as if the nightmare would never end.

So how come I am already marking not just the end of chemo, but a WHOLE YEAR from the end of chemo?  Doesn’t it just go to show that it all does keep moving forward?  I know I have no guarantees that I would never need chemo again (touches wood by the treeful) but I can look back and see just how far I have come.  Indeed it is a wonderful thing to be in this place today, not bald, feeling strong and energetic, my legs working properly and no longer feeling wooden and dreadfully heavy, my fingers and toes having feeling in them, Twang Arm less numb and feeling stronger and three NEDs under my belt.  The path will continue to twist and turn I am sure, but my feet are firmly stepping forwards.

So indeed it is Happy Endofchemoversary to me!  And many more to come I hope!

Back down to earth

with a very big BUMP!

I have had a lovely Christmas and New Year break, a trip to the beach, company of lovely friends and now back at work.  My early morning routine has continued with my sunrise swim and all in all, I am feeling well and optimistic.

So why the start of some stomach churning and anxiety?  Because next week, already, my next 3 month check comes around.  Some one has fast forwarded the calendar and suddenly I am dusting down my travel bag, booking my flight and preparing to head to Bangkok for the scary checks.

Now, this might not be the Big Check, but it is still quite a big deal.  First, I will see Dr C – my Radiation Consultant for what I expect to be a fairly quick check.  It is now just over 6 months since radiation finished and I feel that my skin has healed pretty well.  It is still pretty sensitive but I am not sure how much of that is due to radiation, and how much due to chemo, surgery and those wretched shingles.  There is also a question about possible damage to one lung from the radiation.

Then I will have a full on day which will involve fasting, blood tests and big needles and then review and consultations with Drs A, W and W2.  They will be looking particularly at my tumour markers as they have been a bit above the normal range.  That still freaks me out, I have to say.  They will also check and see if they see any other signs which concern them.

And then there will be the port story.  I have been rather reluctant to share the latest port news.  It was due to be cleaned in December, and after a logistical tale, a kit was provided here so that my Dr could clean it.  Unfortunately, the old port was rather uncooperative this time.  It pointblank refused to provide a blood return, despite reinsertions of the needle, manoeuvres to try and jiggle the vein into producing blood, and technical phone support down a continually breaking phone line from Bangkok.  Interestingly, there was no difficulty in infusing the saline and as guided, two small infusions went in easily.  But time after time, there was no blood return.

Eventually and reluctantly we had to call a halt to this fun, and the guidance from the oncology ward was to wait until the next check.

So no chocolate frog, and no sense of relief that the port was once again cleaned and shown to be working properly.  I had a strange sense of disappointment mixed with worry about what could be causing it to be uncooperative.  It could be caused by a “fibrin sheath” which is (from what I understand) an area where there has been some tissue re-growth around the area where the needles connects with the area which connects to the vein.  This would mean that it is possible to infuse fluids as there is a “push” during this process.  However, when the syringe attempts to draw back from the vein, the suction on the tissue causes it to close and there is resistance.  Apparently there are medications which can melt such a tissue growth.  Sounds very appealing.

The upshot of this is that there are a few scenarios regarding the port.  Firstly, and if the tumour markers are not elevated, and if Dr W2 is happy with all other signs, then perhaps he might think about de-porting me.  In some places, de-porting takes place right after the final chemo, and in others the Drs prefer to keep the port in place, just in case.  Just in case, scares the wits out of me, because we all know that it is short for – “just in case we need the port again for more chemotherapy”.  Yes, I know it is sensible to keep it in place, just in case, because it is much easier to take out than put back in, but the underlying questions is – “so, do you think I am going to need more chemo????”  So Dr W2’s decision about whether or not to de-port me is truly loaded and one I am very anxious about.  The double edge of this anxiety is that if get the very welcome news that I can be de-ported, then I have another surgery ahead of me to do so.  I know it is minor, but it is still scary!!

Now de-porting is one scenario.  Another is that for whatever reason I am not to be de-ported this time.  In that case, I will need to have the port checked out.  I am not sure if they will try and do a regular “flush and clean” and see if there is a blood return, and if the obstinacy or fibrin sheath have dissolved.  If it has then I guess that will be fine, though I will have a continual anxiety when it comes to each port flush.  If it is still problematic, then I am not sure what happens.  I have visions of it being flushed with battery acid or some other caustic substance to free up the blood flow.  You can see I am really helping myself here!  If the flush and magic medications to unblock the blockage do not work, then I really do not know what the next step would be.  I think it might involve knives though!

Although the port decisions are preying heavily on my mind, I have the bigger, over-riding concern that the Drs find something that concerns them and which could indicate signs of recurrence or spread.  And please don’t try to reassure me.  The reality is that we have these frequent checks because there IS a possibility and so that it can be spotted early.  I have heard those life-changing “you have cancer” words in the past so I am not reassured by “don’t worry, it will be all right”.  Because it might not be.  That does not mean I am being negative and defeatist – oh no,  not at all!  I am as determined and as pig-headed-stubborn as ever, and will rise again to any challenges that might be thrown in my path.  I just have to have some mental and emotional oomph to be able to deal with whatever comes up.

So here I am again,  preparing for another Bangkok visit and packing a mix of anxiety, fear, gratitude, anticipation and worry in my travel bag.  More than anything, I will be seeking to bring back NED in my little case for the return journey.

Another Landmark Day

Tomorrow is another Landmark Day.

Let’s call it the “Chemoversary” as it will be a year since I was introduced to chemo.  Once we met, we were to become regular acquaintances over nearly 6 months, and I still have some delightful reminders.  The Annie Lennox look for example, as well as the numbness in my fingers in toes, the lines across my nails and how could I almost forget the port under my skin.  In fact, my “porting” anniversary was yesterday.  Have I really lived with this device under my skin for over a year now?  You would think it was less uncomfortable by now!

However, rather than dwell too much on the Cancery side of things, I am happy to say that I have a plan for the weekend.  A non-Cancer plan.  (The weather also has plans though it seems not for our part of the country, and hopefully not as intense as predicted).

Weather permitting, and as long as there are no other unexpecteds, we hope to head out of town to Bago this full moon weekend which happily coincides with the Thadingyut Lighting Festival.

With any luck I might even FORGET that it is the Chemoversary!

The Triathlon Perspective

I have just seen cancer treatment described as a Triathlon (or the Triathlon from Hell, actually was the direct quote) and it really made me smile – and think!!  There are various components to treating breast cancer, but for many of us there are three big ones.  So the Triathlon terminology with its connotation of three main physically demanding and mentally challenging elements sounds quite accurate.

The Breast Cancer Triathlon does not see us competing against each other, however, but rather we focus on completing the course against one common opposition.

For many of us on the Breast Cancer Triathlon, the three main events are – the Surgery Event, the Chemotherapy Event and the Radiotherapy Event.  Of course there are peripheral extras, such as the Port Insertion Procedure and Hormone and other Drug Treatments (such as Tamoxifen, Herceptin) and other activities to keep us from getting bored.  I could add the Twang Arm special event too.  But the biggies are without doubt those three, although we do not always tackle events in the same order.  It depends on diagnosis, pathology and an element of choice.

The surgery event was my first event.  I found it quite terrifying (before), had interesting dreams (during) and relief and discomfort (after).  Although it was the quickest event to complete by a long way, it is a significant hurdle, especially mentally, and the recovery stage requires considerable effort.

Now I am 75% of the way through the Chemo event which I find gets harder the further I go.  At this stage, I would call it the most gruelling and horrible event.  I am glad that I have rewarded myself at each of the hurdles – I am sure that has helped me to focus on the finish line for this part of the Triathlon.  The finish line of this second event is in sight but still I am not quite there.  It is a struggle to muster the staying power but I know I have to.

Beyond that I am starting to feel the need to prepare for the third event – the Radiotherapy course.  I am not exactly looking forward to it and do trust it will be less demanding than the current event.  I will celebrate course completion with the Tamixofen Treat – years of hormone treatment which is highly effective at keeping recurrence at bay. Not an event, but a kind of follow up.

So as I approach the end of the second event, I am trying hard to focus on completing the whole course and beating the opposition with all of your support and help!!!

It’s that time again………..

Stomach churning, fear, dread, hope, insomnia – and arrival in Bangkok ……………….  it must be the night before chemo!

In fact it is the night before my next appointment with Dr W2 – and if all is fine, then chemo 6 should go ahead.  So it probably will be the night before chemo, but I can not be sure.  I hope it does go ahead and we can move forwards towards the end of chemo, but I have to be honest and say that a part of me also illogically hopes for a reprieve. 

I have one distraction which is helping – a huge internet, Facebook, blog and email backlog caused by the disruption to internet back at home. 

So as the sun sets on a sultry Saturday evening in Bangkok I will try and catch up a bit with the outside world, and avoid thinking about tomorrow.  Denial is a wonderful thing!

On the move again

We are on the go again – and hopefully will reach home this afternoon.

I am pretty whacked still after chemo 5, but keen to get back to the garden, home, friends, gentle engagement with work, fresh food and lots of swimming.  All with a view to getting my strength up again for another zap in a couple of week’s time.

It may be that connectivity is limited – but I shall update however I can.

P is for …………..

Pictures – of some important things in my life right now……………

Well let’s start off with something which identifies Breast Cancer – Pink, but with a cute flower from our garden, just as a way of highlighting how important home is to my recovery and recuperation.   Aaaaw!

Next P is for Pumpkin. Clearly this is another garden connection.  We got back to Yangon in January and these lovely fully grown pumpkins were ripening on the lawn!  SInce my diagnosis I have almost lived on pumpkin, having read or heard early on that it was a good in fighting cancer cells.   I am taking great care with what I do and don’t eat as it is the main thing I have control over in this situation.  So pumpkin soup, curry, mush or however it is prepared, it is on my plate at least daily usually!   And thank goodness the taste buds have not realised and distorted it along with so many other tastes.

The last P – hmmm, well I guess this stands for Poison!  This is the bright red chemo (epirubicin), of which I have now had 4 cycles.  It is the one which is responsible for turning urine bright flourescent pink – very alarming!  But the important thing is that although it is punishing my system, it’s main purpose in life is killing those nasty evil cancer cells which might be trying to hide somewhere.  So it is most definitely something else I have to be thankful for!

New chemo – new delights

Well this is an interesting one.  I had been expecting different side effects this time, and I have not been disappointed!  However, I did not expect to feel as I have been locked in a fridge!

Apparently the taxotere side effects are less predictable than with the first chemo course.

The first course was a combination of 2 chemotherapy treatments (known as EC for short).  True enough, with EC I knew how the groundhog days would run, knew which days were particularly bad, and more importantly, knew that around day 5 was the deepest low, and by day 7 I started to pick up.  I also knew that the EC would consistently bring nausea, fatigue and a number of other delights and although it did get progressively worse, it was known.

Taxotere is a new experience.  It seems much less predictable, and brings with it a very different type of side effects.  If you add to this, the higher risk of depleted white cells and the need for another shot which brings its own side effects, then you get a sense of the new experience I am in the midst of.  It also appears that the side effects of taxotere are cumulative and so most people tend to find it gets worse as the treatments move on.  Great!

So far, I have the usual fatigue, and can now add stomach cramps, tingling fingers, heartburn and the taste buds have gone rapidly onto high alert for something.  With the extra shot, I have been experiencing bone and other aches, a well documented side effect.  What is odd is that a couple of areas where I have old bone injuries are particularly painful and tender and this has made sleeping difficult.  Additionally, my neck and back are stiff and sore and hence the feeling that I have been locked in a fridge overnight, all cramped and uncomfortable.  And unable to sleep!

I know that I have some more days ahead of this, and all being well will get back home tomorrow to rest and recuperate there in our lovely peaceful, healing environment.  The fridge is bigger too!

Mixed feelings

Oh dear, it’s that time again.

Mixed feelings abound.  We left Yangon this morning, sad to leave home and head back to limbo.  Our journey to Bangkok was uneventful but my mood was dark with tension and nervousness.  However, it is also good to be back online as connectivity at home is increasingly difficult.  (WordPress is no longer accessible, twitter has also disappeared and intriguingly the in box of facebook  remains unopenable).

I repeated the blood test on Thursday, unsure of how or whether the counts would have increased.  A stomach upset at the weekend had sabotaged my attempts to rebuild my strength.  However, the results came back with a clear increase in the main levels.  The essential and naughty neutrophils had increased quite a bit.  The normal range is between 1.5 and 6.6 apparently – at 1.1 last week mine was clearly too low for another dose of destruction.  The repeated test showed an increase to 4.78 – now I have no idea what that all means but it is clearly a lot higher than it was and also nicely within the normal range.  Now I just hope that Dr W2 is going to be happy with the results too and that chemo 5 can go ahead.

As usual, I am anxious that this chemo goes ahead, particularly now that it has been delayed.  However, as always I dread it so much a significant part of me would secretly be relieved if it can’t go ahead.  Though not so secret really given that I have posted it here, I guess!

This time though, there is an additional anxiety.  At the halfway point of chemo, apparently the regimen changes.  I have had four cycles now of an eight cycle course so that is pretty clearly the half way point.   I have had my full dose of part one (described here) and now move on to a new unknown chemo.  This is scaring me witless (rhymes with………) As much as I detested the first picnic, the unknown feels extremely scary.  The side effects will in all likelihood be different and some new delights are in store for me.

No matter how mixed my feelings are though, one thing is for sure.  By this time tomorrow I will at least know whether or not I am at number 4 still or have moved on to number 5.