New Year’s Eve

New Year’s Eve 2013….

Not sure how to sum up this year in a word: Challenging? Horrid? Terrifying? Humbling?

It seems to have been a rather tough year for a lot of people, and I have heard many friends say that they cannot wait to see the back of 2013 for all sorts of reasons.  For me, I definitely don’t think it will be a year I would consider one of my favorites; however as with most tough times, it certainly has taught me a lot about myself and those around me.

The year ahead is a scary one, the chemo continues, radiation looms, unknown hormone treatments ahead, more surgeries… So I guess I will see the New Year in respectfully.

No resolutions, no new diets, no promises of joining the gym, no negotiations.

I am rather learning to ask for the things that really matter to me these days – days without nausea and pain. No chemo induced constipation (tmi!). No ports. No disappearing veins. No more blocked lymph and random swelling. No more headscarves. No recurring cancer.

For 2014 my biggest hope is pretty simple: to regain an identity in a life without breast cancer AND special people to share it with.

“May Light always surround you;
Hope kindle and rebound you.
May your Hurts turn to Healing;
Your Heart embrace Feeling.
May Wounds become Wisdom;
Every Kindness a Prism.
May Laughter infect you;
Your Passion resurrect you.
May Goodness inspire
your Deepest Desires.
Through all that you Reach For,
May your arms Never Tire.” D.Simone

“I have no way of knowing how people really feel, but the vast majority of those I meet couldn’t be nicer. Every once in a while someone barks at me. My New Year’s resolution is not to bark back.” Tucker Carlson

“Your success and happiness lies in you. Resolve to keep happy, and your joy and you shall form an invincible host against difficulties.” — Helen Keller

“If you asked me for my New Year Resolution, it would be to find out who I am.” — Cyril Cusack

Nap Time

So relieved!!!After a nail biting 45 minute wait at the cancer centre for my blood results, Sister Debbie came through with a great big hug to say my bloods were perfect.  You would think by her reaction and mine, that I had won the lotto!

 

I went through to have my antihistamine injection in my bum, just as sting-ey as a vit B, thought you would be happy to hear that Wendy!

 

Sister Debbie explained the possible side effects which may occur in the first few minutes of the drug going in as the body tries to fight off this new invasion.  A flushed face, tightening of the chest, severe lower back pain and to yell if I experience any of these symptoms.

 

With my injection this morning and my cocktail of premed drugs last night, I feel ridiculously sleepy. I might be tempted to ask for a blanky and have a nap if I wasn’t concerned Pete may take photos of me dozing and drooling in my lazy boy and post them on Facebook!

 

“Patience is power.Patience is not an absence of action; rather it is “timing”it waits on the right time to act, for the right principles and in the right way.” Fulton J.Sheen

“If pain must come, may it come quickly. Because I have a life to live, and I need to live it in the best way possible.” Paulo Coelho

“After you find out all the things that can go wrong, your life becomes less about living and more about waiting.” Chuck Palahniuk

“We never live; we are always in the expectation of living.” Voltaire

“Think what a better world it would be if we all, the whole world, had cookies and milk about three o’clock every afternoon and then lay down on our blankets for a nap”. Barbara Jordan

“When the going gets tough, the tough take a nap”.Tom Hodgkinson

“Learn from yesterday, live for today, look to tomorrow, rest this afternoon.” Charles M. Schulz

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Bah Humbug!

So today I get the call from the Cancer Centre to say that according to the blood tests I did this morning, my bloods are too low for treatment tomorrow.

You would think this may not be the worst news ever, after all it means I can at least enjoy Christmas Day is a little more than I would have a day after chemo. However, considering that I felt better today than I have for an entire week, my cold finally gone and I have done all the things I have been told to do; I have rested and had plenty of fluids so I’m not sure where things went wrong.  And I’m not sure how much more resting can be done without becoming completely comatosed!

So I guess you can say I’m feeling disappointed and totally frustrated.  I just want to get these next 12 treatments over as quickly as possible and this delay is totally unwelcome.

I’ll go back on Friday for bloods again and if they are happy with them, I can have chemo straight after. But not knowing what to expect or what more I can do to get those bloods up, I know it’s not going to be an easy few days.


“You’ve done it before and you can do it now. See the positive possibilities. Redirect the substantial energy of your frustration and turn it into positive, effective, unstoppable determination.” Ralf Marston

“It is hardly possible to build anything if frustration, bitterness and a mood of helplessness prevail.” Lech Walesa

“The fear really hits you. That’s what you feel first. And then it’s the anger and frustration. Part of the problem is how little we understand about the ultimate betrayal of the body when it rebels against itself.” Charles Bronson

“Frustration is a sign I am acting independently. The more you try your own way, the tighter the doors will stay closed.” Joyce Meyer

Being a vein girl

Friday was our visit to the Dent Doctor for my check up before the next chemo treatment. My bloods were low according to the results of the tests I did on Thursday.  I have been fighting a cold all this week, which is either the reason for low bloods or low bloods are a reason for my cold…. regardless of the hows or whys, I’m back to the lab on Monday to repeat the tests.


Chemo is scheduled for Tuesday, (yes Christmas Eve!), blood results dependant; so today, despite the fab weather, is a bed and rest day.


Doctor Dent went through the new chemo treatment with us:  Taxol apparently is made from plant extracts which can trigger allergic reactions in human people, although he reassured me, as he touched his wooden desk, he has not seen an allergic reaction in any of his patients on this drug.  But just to be sure I have been given steroids and antihistamines to take the day before treatment which is followed by an injection in the bum on treatment day!  He has also given me a prescription for anti inflams as another side effect is joint pain, especially in the hips and lower back.  Did I also mention the pins and needles in the fingers and feet?!


However the most awful thing he said was, was I ready to have a port inserted?! The first time we met him and the subject came up he said he would prefer not inserting a port as he didn’t want to interfere any further with my chest area after my surgery. A decision I was more than happy to hear!

I have spoken to people who have had ports during chemo and they swear by them, no battling to find veins for chemo and no hassle.   But I have rejected the idea for a number of reasons. I am a bit freaked out about having something else inserted under my skin, especially anywhere near my neck…don’t ask, it’s a bit of a phobia, crazy when I think of what I have already been through!  I am also really concerned about introducing any further areas of infection, especially with my track record.  The port is inserted into the jugular, subclavian or superior vena cava vein under local anesthetic, under surgical conditions and takes about an hour (according to Google)… so apparently although it’s relatively easily done, it’s still a medical procedure with cutting, sutures and discomfort!

I have done enough toe curling research to know this is not something I would ever choose.  Another reason is that I don’t think I would like to have another scar, another reminder of this disease.


So my heart stopped when he said that…I responded very quickly with a resounding “no thank you” (I think I was that polite!). But for someone who has gone along with everything suggested by her GP, Surgeons and Oncologists thus far, to say “no” felt great!  He was actually supportive with my decision and said he was happy for us to give it a good go without the port as it was a personal choice.


I suspect the next 12 weekly chemo sessions may be extremely uncomfortable on my veins, but I am determined to get through it any way I can without a port. I got them to take blood from my foot on Thursday, even before the port discussion; I wanted to keep my left arm for chemo only.  Believe me, it wasn’t pleasant and I know it’s not going to get any easier.

“I’m sure the feeling of fear, as long as you can take advantage of it and not be rendered useless by it, can make you extend yourself beyond what you would regard as your capacity. If you’re afraid, the blood seems to flow freely through the veins, and you really do feel a sense of stimulation.” Edmund Hillary

“Family isn’t just about whose blood runs through your veins. It’s about who never left your side stood up for you and believed in you.” Adrian Body

Glowing in the dark

Today the physio declared me Radiation ready! 

This statement may conjure up images of me glowing an eerie fluorescent green in the dark, but sadly it actually means something a whole lot less cool!  My right arm is now mobile and flexible enough for me to be able to lift it above my head for at least 10 minutes in order for me to have radiation after the chemo is done.

It seems silly that this is such a big thing in my life after all it’s such a simple ask: to be able to hold your arm above your head while lying completely still for 10 minutes a day.  No superior human strength required to perform that task!  But considering that I have been having physio since the end of September and even that up until a month ago I could not get my arm above shoulder height, this for me is a feat on par with Chad Le Clos beating Michael Phelps! 

Just after surgery when we got the good news that my cancer had not spread to the lymph nodes, I was positive that I would not need any radiation.  Chemo was a possibility as it would seek out any floating renegade cancer cells which may be in the body undetected by the scans etc.  Radiation however is given to a specific area targeting cancer cells in that specific area.  In the case of breast cancer, these include the chest wall and lymph nodes under the arm.  So in my case no detectable cancer cells equals no reason to radiate?  RIGHT?  WRONG!  Like so much else about this disease….. things aren’t always as they appear!

 Our visit to the Dent Doctor all those months ago cleared up some of those misconceptions rather quickly.  101 other tests are done on the tumor and the surrounding tissue removed at the time of the mastectomy to determine what kind of breast cancer it is (I was clueless – I had no idea there was more than one), what the cancer responded to, how quickly it was growing etc etc.

So when the Dent Doctor said I would need chemo AND radiation, I was totally devastated, it made no sense to me!  He went on to explain that the tests not only picked up the 3 malignant tumors in the right breast but that there were also signs of Perineural invasion which made him 100% convinced that both treatments were necessary.  Perineural invasion meant that the cancer cells had literally started invading the nerves in the breast and it was impossible to know where or how far these had spread through the network of nerves.  Solution…..radiation to target the chest wall and the surrounding area to kill off any insurgents!

For me this means 3 weeks of daily radiation treatments after chemo ends and once the implants are done.  For my right arm, this means more physio after radiation.  My physio described radiation as the “gift that keeps on giving”.  She told me to imagine how tight the skin feels after a dose of bad sunburn and then imagine that expanded to the surrounding tissue and muscle; then add in poor lymph drainage just for good measure.  She says the effects of radiation treatment can be felt for up to two years!

But for now, I am radiation ready and it means ANOTHER milestone has been reached!  Other than any help I may need with Lymphatic drainage, or any unexpected emergencies; I don’t need the physio until 2 weeks after radiation next year!

 

“Failure and struggles keep you humble, success and achievement keep you glowing, but only faith and determination keeps you going.  So stay focused, and celebrate your efforts too, not just your outcomes.” Melchor Lim

“When we recall the past, we usually find that it is the simplest things – not the great occasions – that in retrospect give off the greatest glow of happiness.” Bob Hope

“At my age, the radiation will probably do me good.” Norman Wisdom

“It doesn’t make sense to call ourselves ugly, because we don’t really see outselves.  We dont watch ourselves sleeping in bed, curled up silent with our chests rising and falling with our own rhythm.  We don’t see ourselves reading a book, eyes fluttering and glowing.  You don’t see yourself looking at someone with love and care in your heart.  There’s no mirror in your way when your laughing and smiling and pure happiness is leaking out of you.  You would know exactly how bright and beautiful you are if you saw yourself in the moments where you are truly your authentic self.”  Unknown

“The darkness of the whole world cannot swallow the glowing of a candle.” Robert Altinger

 

“There are two kinds of light – the glow that illuminates, and the glare that obscures.” James Thurber

Earning my stripes

With my arm healing so well and the mobility improving every day, I have been able to start wearing clothes I have not been able to get into since my surgery. No longer do I have to rely only on my selection of button up tops.

I have always loved the nautical looking stripey tops and have quite a selection in my cupboard. So the other day I decided I felt like it was time to be a bit more daring and wear my blue and white striped T-shirt. I was so excited that I was able to get it onto my body without much effort and discomfort! I went to the mirror, put on some make up, and tied a pretty blue scarf around my head to match the whole outfit.

Now I have to say that I have managed to accumulate a variety of scarves and assorted headgear, mostly due to generous local and overseas friends and family. I have become rather confident in tying scarves and headscarves around my little bald dome or as I like to call it my LBD (similar to the little black dress, but not!).

I had no need to be at all concerned about choosing and finding just the right headscarf to go with my stripes. UNTIL I had a closer look…..my lovely stripes and my head scarves do not make a great combination……unless you are Johnny Depp or playing a pirate in a panto!

I was devastated…no stripey tops until my hair has grown back, or until I am invited to a pirate party! ***SIGH***(or rather ARRR)….

“There are four questions of value in life… What is sacred? Of what is the spirit made? What is worth living “for, and what is worth dying for? The answer to each is same. Only love.” Johnny Depp

“Once you can accept the universe a being something expanding into an infinite nothing which is something, wearing stripes with plaid is easy.” Albert Einstein

“Some pirates achieved immortality by great deeds of cruelty or derring-do. Some achieved immortality by amassing great wealth. But the captain had long ago decided that he would, on the whole, prefer to achieve immortality by not dying.” Terry Pratchett, The Colour of Magic

“To err is human but to arr is pirate!!” Unknown

“The problem is not the problem. The problem is your attitude about the problem. Do you understand?” Captain Jack Sparrow

Motion sickness

Wow it’s been 8 sleeps since my last treatment and this morning has been first time I woke up sans nausea! Hooray!

 

 I have been amazed how hard it has been climbing out of the hole created by this last treatment.  I’m trying to be positive about the chemo and the good it actually is doing in my body, getting my mind stronger to make up for my weakened body…but I won’t lie…it’s hard.

 

Had a great physio session this week, some good lymph drainage done and the strength and flexibility returning to my right arm, is incredible.  Not quite where I was before surgery, but making definite and significant improvement despite a few setbacks.  

 

I had my bloods done yesterday, and no word from the Cancer Center, so they must be happy with the numbers!  The worst part about this week seems to have been driving to both places…I didn’t realise that you could suffer from motion sickness in a vehicle when you’re the driver!

 

But today is a good day and I need to be better….still some Christmas shopping to do and only 14 shoplifting days till Christmas!

 

“People travel to wonder at the height of the mountains, at the huge waves of the seas, at the long course of the rivers, at the vast compass of the ocean, at the circular motion of the stars, and yet they pass by themselves without wondering”.  Saint Augustine

 

“To array a man’s will against his sickness is the supreme art of medicine” Henry Ward Beecher