Not when, but if? …… Surely not!

As I near the finish flag in the Triathlon of heavy duty treatments I yearn more and more to get back to something like the way I used to be.  I know that it will take time to feel better, to get my own legs back and be able to do many of the things I used to be able to do.

The side effects of chemo have been a real mixed bag of delights.  It is no secret that I struggled particularly with the loss of my hair as I have ranted about it on various occasions.  I am sure it is no surprise then that one of the biggest things I look forward to is not seeing Dr Evil in the mirror any more!!

I remember so clearly, that day in November just after chemo 2 when I became bald.  I remember sitting in the chair at the hairdresser as the last of my hair fell to the floor under the clippers and being unable to stop the tears.  The shiny white scalp was such statement that I really, really was a cancer patient.

I have never been able to get used to being bald and I have really focused on the fact that hair loss from chemo is a temporary thing. In fact, the one thing I really need to hang onto at the moment is the belief that my hair is coming back, and coming soon.  After all it is over a month since my last infusion of Taxotere.  The fine covering of duck down must evolve soon into proper hair, mustn’t it?

So when I read this recent article suggesting that permanent hair loss after Taxotere is more common than we often expect, it was not a welcome piece of information.    According to the research, the numbers are people who experience permanent alopecia are not huge, but large enough to be significant – estimated at around 1 in 16.

One interesting discussion is that some people feel that they would have chosen not to have had Taxotere if they had been aware of this increased probability of permanent hair loss.

That really made me stop and think.  I cannot imagine that I would have even considered not having Taxotere, no matter how difficult I found the side effects, even if I had been aware that the hair loss could be long term.  Survival and recovery and the topmost priorities for me, given my diagnosis and pathology.

Oddly, the thing on my mind is more about how I felt that day in November particularly, and how I feel every time I look in the mirror at Dr Evil.  It was hard enough knowing my hair and I were parting company (no pun intended).  I do not know how I would have felt, and how I would have coped, if it had even occurred to me that this loss could be permanent.

I will be looking even more closely at the duck down from now on and let’s hope it does decide to thicken, grow and darken.

Progress Preview

A quick one with the headlines:

  • Blood test (including needle) – done :)
  • Review with Dr W2 – done :)
  • Anaemia – bit better than Thursday (?!) and almost back to the level it was before Chemo 6 – hmmm.
  • Transfusion – not essential, and fit to fly :)
  • Chemo 7 (Taxotere 3) – DONE! FINISHED! :) :) :)
  • Side effects – on their way as we speak……………….
  • White cell booster – tomorrow (with needle – :( )
  • Chemo treat – decision made, procurement in process, wait for updates
  • Eyebrows – almost gone!!!  More about those disappearing rascals later…………
  • Fingers and fingernails – numb, tender and a not pretty – more about them later too….

Today, Dr W2 was on great form – very positive and happy with the way things are going.  I still have quite a few questions, but was highly encouraged at how positive he was about my progress.  And trust me, he is very direct and frank (for example about my lymph node involement and the need for a heavy Chemo course) so I know he does not believe in platitudes.  Duck billed or otherwise.

So there were are – 87.5% through the Chemo event and only one more chemo left.  If all goes well that will be on April 4.  Then I will be clambering over the wall and leaving the All Exclusive Chemo Club, and much as I am grateful to it, I never ever want to have to come back!

Follicular Update

I have not ranted about hair for a while, and surprisingly things keep changing so it is time for an update.  This was prompted when I noticed something rather odd a few days ago.

Today marks 20 weeks since I started chemo. It took just over 3 weeks and an intermediate short cut to lose the hair on my scalp.

I was and am still outraged that the hairs on my legs hung on for dear life and still most are obstinately in place. My response has been a refusal to depilate. Although as well as wanting to show them how cross I am, it is actually not wise to depilate as that can give an opening for infection.

I mentioned a couple of weeks ago that weird things are happening on my head. I have a soft, uneven down covering my scalp. It is around a centimetre in length on average, and mostly a very fair, non colour. Called blonde. It is not grey or white. That is a different colour – totally different. There are also quite a few dark strands scatted around. When I check the breast cancer forums online, I learn that other women have a similar fuzz. I have no idea what impact the taxotere is having on my hair as it is less than 6 weeks since the first taxotere cycle, and whether this growth is the start of hair of an interim duck phase.

The weirdest thing I have to report though is a sudden change in eyebrow behaviour. My eyelashes have been consistently patchy, and the lower ones very sparse, but the eyebrows have stayed in place. I have no idea what their game is at this stage, but I have developed bald patches in my eyebrows. Now what on earth is that about? And I am not talking about nice, even baldness – patchy horrible baldness amidst healthy brows! How gross is that?

And how unfair to wait until 20 weeks to throw this one into the game?

The alter egos – or identity theft?

I think it is time I updated you about the alter egos who have been trying to take over the Feisty Blue Gecko!  In particular Dr Evil and Twang arm have been trying hard to take over my identity!!

Dr Evil is the look which I struggle with when I look in the mirror.  After all these weeks I still can’t get used to being bald.  Grizelda the wig is useful but I find I tend to wear scarves more and feel more comfortable that way.  Grizelda is good for travelling from Bangkok to Myanmar and I find I occasionally reach for it if heading out shopping. 

As for the Dr Evil look – even though I am still in the midst of the chemo treatments, I am finding a strange fuzz is starting to grow.  It is not like hair, but more like a down and strangely seems to be a mousey fair colour.  It could even be blonde?  I feel as if I am being transformed into a day old chick.

My other identity thief is good old Twang Arm.  For a long time after surgery, Twang Arm successfully caused more disruption, pain and anguish that the mastectomy itself.  Removal of the 15 lymph nodes caused constant pain, significant nerve damage and restricted movement and really got me down.  I started doing physiotherapy exercises but progress has been slow.  If you add to this, the days after chemo also made Twang Arm extra stiff and immobile. 

I think the turning point, or maybe the first turning point, came when I was finally able to get into a swimming pool on 25th November – quite a few weeks after surgery.  Just bobbing gently in the pool and managing a kind of breast stroke (no pun intended) across the pool a couple of times, really seemed to make a difference.  It was around that time that I was also able to straighten Twang Arm for the first time.

On return to Yangon I made a secret mark on the bathroom wall so I could monitor how far I could stretch Twang Arm.  Slowly, slowly I was able to keep my fingers reaching just a little bit further.

I think the next important turning point, was being able to get in and out of the pool in our apartment in Bangkok.  That meant that I could swim daily and this was something which I have also been able to continue with in Yangon.  It is probably bordering on obsessive now but I am well and truly hooked if so!  I swim a minimum of 5 times a week and get really grumpy if something interferes with this.  Now let’s be clear.  When I say swim and mention that I swim usually 600 – 800 metres (and have even managed a kilometre – yes I am rather proud of that!) I must be honest.  We ‘re talking about very gentle, slow lengths totally devoid of any style, and with my mouth perched as high as possible out of the water.  This prevents swallowing any water and prevents my glasses getting too splashed.  Besides I have never really be able to swim fish like and with my head under the water!

The results?  The mark on the bathroom wall shows that I can now reach considerably higher (more than 6 inches higher).  The tightly strung sensation is considerably less now and I can do the original excercise suggested to more than 3 times (the one where you run your fingers up the wall like a spider) and now I can do this easily and with no pulling sensation.  I used to get a weird shivering sensation across my shoulder which was actually painful.  Now I hardly feel this, and it is no longer painful, just a shuddery sensation which lasts only a second or so.  My left ear no longer tingles when I touch it – more signs that the nerve damage is healing.

Now, Twang Arm is still making its presence felt and I am not convinced it will ever be totally better.  It still sleeps on a pillow as if it is a precious jewel on a velvet cushion and it does feel uncomfortable most of the time.  But when I compare it with even a month after surgery, it is playing a much reduced role in my life and far more manageable.

I find this really encouraging, and I am sure that if I keep on with the gentle physiotherapy excercises, and particularly the swimming, I will ensure that it is not able to take over my life in the way I feared earlier.

Now, I have an appointment with my surgeon Dr W tomorrow, so maybe I had better see what he says too.  His expectations are always a bit higher than mine and he produces a new trick for Twang Arm whenever I show off my progress!

So between the day old chick down chasing away Dr Evil and Twang Arm being banished by persistent if gentle excercise, I can focus on the main identity thief.  That has to be the beast at the root of all this – breast cancer.  And my focus here is clear.  I am look ing towards the day when I am no longer a cancer patient – but a cancer survivor.