New Normal

Yesterday turned out to be an interesting day…

 

I woke up feeling good: no nausea, no headache, no serious pain.  I followed my usual routine: lymph drainage, bio-oil wrestling and my physio exercises.  My right arm seemed a little more rigid than the day before, but there has always been a bit of a two steps forward one step back thing going on with my arm’s recovery, so nothing unusual.  I had noticed that the skin under my arm had been a little red and warm to the touch the night before.  But with the entire area still a bit swollen and still trying to heal, it is hard to determine what is exactly normal and what is not.  I certainly wasn’t concerned about it.  I had already booked a physio appointment for later in the day so I thought I would ask her have a look at it.

 

The physio did just that and promptly referred me straight to the Cancer Centre. 

 

I walked in rather apologetically, expecting them to practically roll their eyes and mutter something about “newbie” paranoia!  But they sweetly took me through to an examining room where a nursing sister was ready to see me. 

 

Quick Chemo fact:  Around day 7 after chemo treatment, is when the body’s immune system is at its lowest.  I was given strict instructions to have a blood test done a week after my treatment and two days before the next one so that my white blood cells could be monitored.  Chemo makes no distinction on its mission to destroy fast dividing cancer cells, it goes for ALL fast dividing cells and this includes those in the bone marrow producing white blood cells and more importantly the body’s natural defense against infections.  Having a less than “chemo normal” white blood cell count means chemotherapy will not be administered until the body’s immune system has recovered sufficiently to cope with the next onslaught.  Ultimately prolonging an already lengthy treatment cycle!

 

As it was only one day before my first blood test was due it was decided to do the test early so they could check infection levels in my blood before they got one of the Oncologists to see me.  Well, I was rather surprised – I mean did this really warrant an Oncologist’s opinion? After all I was actually feeling so much more normal and so much better than I had in 5 days! 

 

But with the opportunity of not having to return the next day for a blood test, I rolled up my sleeve!  I have never been squeamish about having my blood taken; I have been a blood donor for many years and have good veins. Now that may sound a little conceited but like I mean I have EMBARRASSINGLY good veins!  The vein in the crook of my left arm, sticks out so much that it’s almost a party trick!   I used to have the trainee staff at the blood bank taking blood from me as it was THAT easy!  No pumping up the vein with squeezy balls for me, no digging around searching for a good spot, it was just there!  So I was totally perplexed when she said she could not find my vein.  I could not believe it!  My beautiful vein – after one chemo session had completely disappeared.  We had been told that veins tend to “shrink” during chemo – totally understandable after 6 months of treatment, but after just ONE?!

 

The shocks kept coming. She managed to find a vein and sent the bloods off for analysis.  The results came back and I found myself in the Oncologists office.  He observed that the skin was not only a bit red, but there was some “spongy” swelling in the area which indicated that I had cellulitis.   Well, I thought to myself, if he thought THAT was cellulitis, he obviously hadn’t seen my thighs and bum!

 

He explained that either due to the skin being stretched in the area from the expanders or through the scar area itself, infection had gotten in to the skin.  Not having the lymph nodes to help filter the infection it would just continue to spread. The positive was that my white blood cell count looked good, so good that he would not have to hospitalize me to sort out the infection!  WHAT?!

 

I am now on antibiotics and anti inflammatories for 5 days. 

 

The enormity of this entire situation really hit me hard as I thought I was starting to understand all these new parameters. But now I feel as though I am living in a complete alien world where nothing is familiar, nothing is normal and I still don’t quite understand the rules.

 

THIS is now my new reality, my new normal…..oncologists, white blood cell counts, infection control, lymphoedema, cellulitis, disappearing veins…..

 

“It is normal to give away a little of one’s life in order not to lose it all” Albert Camus

 

“I didn’t want normal until I didn’t have it anymore”.  Maggie Stiefvater

 

 

 

 

 

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3 thoughts on “New Normal

  1. One message, and in a few seconds my mind is in overdrive… You’re at Hopelands, I’m at work – in reality a maximum of 10 minutes away but suddenly it seems like an eternity and far too far away…

    The suspense as you wait for the results and to see the oncologist, to let me know what they say – what is the next curve ball that has been thrown at us, how will we tackle this one? The relief that washes over me when you call, its ok – you’re ok and it can be dealt with… The urge to drop everything, just to see you, be with you, hold your hand and see with my own eyes that you’re ok.

    I don’t do well with waiting around, (you know that, perhaps it genetic?) things need to happen as planned, the way I expect and to the degree that I can control… Guess waiting is something I am going to have to learn to accept, just know;

    “I hate waiting. But if waiting means I will be able to be with you. I’ll wait for as long as forever just to be with you”

    I guess this is our new normal for now. I know its hard but we’ll adapt, embrace it and when normal is thrown out the window – we’ll start all over again. I’ll never forget the wise lady who told me “human beings are remarkably adaptable.” we will keep tackling these new phases of normal together.

    “If you’re always trying to be normal, you will never know how amazing you can be.” Maya Angelou

    “Whats this thing called normal? Is it contagious??? OMG, don’t touch me! I might catch your normal” Anon

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  2. You are brave, honest and funny, and I admire your ability to convey your feelings. I had breast cancer in 1986, just one side, and I’m still here. Only one set of lymph nodes was removed,; I had radium, not chemo, followed by a year’s course of anti-oestrogen pills. It was a hormone related cancer, and slow growing; the date of my mastectomy was October 21st. We doubled up the radium treatment to be given in 2 weeks instead of 4, because one had to go to Durban at that time. Petrol was pricey! I remember thinking that the black felt pen lines drawn by the therapist on my chest looked rather like a Mondrian painting, all squares and rectangles! You mention the tremendous support of your friends and husband; I had the same, a wonderful backup of love, prayer, meals cooked,kids taken care of,gifts and letters. I shall pray for you – take one day at a time, don’t look too far ahead, but keep fighting, and keep your femininity. With love.

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  3. Thank you so much Maureen for sharing your story with me. I’m always so encouraged when I hear from those who have gone through all this and have gone on to lead long happy lives. I really appreciate your advice and your kindness. Lots of love Janine

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