Sunday 4 October 2015

DAY 29 - RITUXIMAB INFUSION

So it turns out that fear, insecurity, nastiness, aggression are NOT immune to my sterilisation bubble and have been busily building to this morning when I did something I am deeply ashamed of .
I took out my fear and frustration and my PERCEIVED total lack of care of my request out on someone at home.
I take this opportunity to again apologise.
Again - if you can't say something nice - Don't say nothing at all.  Terrible guilt ridden morning - I DON'T recommend it when you've been on such a high for so long.

Anyway, today marked the day of my 5-6 hour Rituximab infusion.  This is the FINAL STEP in the process!!   Tomorrow I will have Vlad removed from my neck and then I get 1.5 days recovery before I board the plan back HOME!!!!!!!!

Rituximab according to Wikipedia is a chimeric monoclonal antibody against the protein CD20, which is primarily found on the surface of immune system B cells. Rituximab destroys B cells and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells. This includes many lymphomas, leukemias, transplant rejection, and autoimmune disorders

What is does for us, I am lead to understand, is pumps up our immunity and white blood counts, ready for the trip home...but I could be so far embarrassingly wrong!

Anyway - it's in their fighting the good fight!

So today was just spent doing that.  Again...it SHATTERED me.  I am like a zombie and my legs are STILL so bad...so so bad.  AGAIN - no cause for alarm and perfectly normal for most .  So I go with that. 

I realise now the road to recovery at home may be a little harder than I had blissfully had in my head ...but then I've had brilliant days here where I've been so productive so I'm not going to stew on that either.  Patients that went home only last week are feeling amazing and better than in years so it is their positivity I am drawn to.

The article I posted yesterday said - get up - get dressed- do SOMETHING ...and that's what I'm all about so I think in going to be fine.  With all Andy, Piper, Mum, Dad, Sisters, Friends have done to prepare my house....I just have to NOT feel guilt on the days when I need to rest.  THEY will not be the ones demanding it of me ...it will be ME fighting my own demons there! 

Anyway - as I mentioned - I'm shattered (again!)  but I am ecstatic too! 

I AM DONE! 
I AM RID OF MS
I HAVE A CHANCE AT A WHOLE NEW LIFE. 
I AM FREE. 
TEARS OF JOY ARE ROLLING DOWN MY CHEEKS. 

We laugh here because the last line on the procedure chart is  "hospital has a laundry room.  Inform staff if you need clothing washed"....so THAT'S where I'm up to on my sheet!  WASHING!

My thanks to the PHENOMENAL Dr Fedorenko, Anastasia and their team cannot ever be expressed eloquently enough here.  They are just the most loving , holistic, giving, caring, funny, beautiful, dedicated, aware, switched on team.    But enough - my gratitude is through the roof and around the world 10 times. 

TOMORROW I will write about LOVE.  Love of my time in Russia, love of my family, my friends, my journey to get here, but also the love of one of my most amazing, inspiring, divine, beautiful giving friends who ties the knot tomorrow and this fills my heart (to overflowing) with such love.   No one deserves it more.

So with forgiveness (I hope), love, gratitude, amazement, joy and growing strength (again I hope) I say goodnight.  

Oh ..and numbers for those:
Haemoglobin:  104  (normal 120-160)   (this could be pesky periods fault too - I dunno)
Leukocytes      6.85 (normal 4-10)
Platelets        292 (normal 150-400)

Just need those little Haemoglobins to jump and I'll be "normal" as they come.  Baaa  HHhaAaaarrrRRrrrrRr!  :)

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