24 December 2010

Christmas Eve 2010

I write this post with mixed feelings of sentiment. Looking back I seem to have gotten stuck in time somewhere at the beginning of the year. Kiara and I had had a wonderful Christmas last year, first with Marcus and his boys and also with my family. I remember us pledging that there would be a next year together. It was a happy Christmas.

Then the new year started in which Kiara's musical Amandla Mandela was in full swing. Despite a new pin in my arm I tried to go to as many of Kiara's shows as possible. There was
one specific time that I felt so weak that I went to get my wheelchair in the intermission. I wondered if I would make it through her shows.

I did! I attended her last show in Sittard and my sister Angélique drove us. By the time we got there paralysis made it's entrance in my life. Tumor mass in my spine was damaging my spinal cord.
We drove straight from the show to the first aid and I was admitted to the hospital that day, March 28. Since then it's been an up hill battle trying to defy cancer.

It all came to a screeching hault last weekend which looking back now seems like an unreal dream. I was supposed to have an Iodine treatment but wasn't feeling well. There were problems with my bodily functions.

The cancer has
progressed and a rather high level in the back, devastation is no longer postponable. As usual my inner radar told me something just wasn't right. After intensive diagnosis the neurologist told me that I am to expect to loose all functions from the bottom of my chestbone downward pretty soon. All my efforts to walk have flown out the door now.

As things go Mom and I got caught up in the medical carrousel last week. Tests were done, radiation therapy was given, meetings were held, my pain was managed etc. and eventually, for the first time, I was given a family room on the oncology ward. I couldn't help noticing that I was the liveliest patient there, not to be interpretted wrongly, because I was one of their worst cases. I would have never been given that room otherwise. It was comfy there and Mom was able to spend the night there with me. What happened in that room could best be described as private, I guess. I can't describe what happens between a mother and a daugther and how confusing that gets when your own daughter also comes by. The dynamics of caring, sharing, protecting, and wanting to ease the pain for each other are very complicating. Kiara visited on Saturday and we had our talk. It gets harder each time but she makes it easier for me with her incredible capacity to deal with tragedy. I am so proud of her level headedness, her intelligence, her ability to plow through a mourning proces. She uses maths and her favorite things for comfort. Focus somehow eases the pain. Kiara went home with the Kleps who took her into their home lovingly. She was OK. Mom and I spent another 3 days in the hospital. I underwent a radiation session and the Docs wanted me there for observation. I made use of the situation to have my first shower in almost 4 months. It was so nive to feel the water on my skin that the instant it touched me I cried. I cried for a good hour and felt so good afterwards. (The showering is lying down on a special showerbed).

I came home in a winter wonderland. My house looked like a fairytale cottage. I haven't seen this kind of snow since 1985. I remember that that year I had pa
in in my knees and that they had found week spots on my Femur. Could that already have been the cancer?
When I came home Mom and Melvin swapped shifts. I had come back as another woman than the one that left on Friday. We had no idea what we were into. Even all the nurses, physical therapist, and my GP were so blown away, that we decided to just go with the flow these two weeks to see where exactly we are at. We focussed on Christmas. We have to get it right this year. My home was the opposite to Scrooges... it was all but Humbug.

Life continues at number 1.


Peggy Schreuder said...

Hoi lieve Aisha,

Ik heb net je verhaal gelezen en ik heb je natuurlijk ook op tv gezien. Je zag er fantastisch uit en je verhaal was erg duidelijk. Yinka heeft ook gekeken, we vonden het erg interessant en bovendien leuk om jullie weer op tv te zien.
Jeetje, Aisha waar moet je je allemaal doorheen? Ik wou echt dat ik je ergens mee kon helpen. Ik zat gisteren ook te denken dat die keer dat Kiara en Yinka hun laatste voorstelling in Sittard hadden jij je nog heel goed hebt gehouden tot na de voorstelling. Ook vinden Yinka en ik het nog steeds geweldig dat jij toen die kerstbrunch hebt georganiseerd voor ons allemaal. Dat is voor mij trouwens de eerste keer geweest dat je mij vertelde dat je kanker hebt. Ik was toen erg geschrokken. We zijn nu weer ongeveer een jaar verder en ik vind het bewonderingswaardig hoe jij en Kiara trouwens ook je door deze moeilijke periode heen slaan. Ik geniet altijd van iedere dag die ik heb en volgens mij doe jij dat ondanks alles ook. Probeer dat zo vol te houden, Aisha! En nogmaals als ik je ergens mee zou kunnen helpen, laat het me dan weten. Kiara is ook altijd welkom bij ons. Als ze zin en tijd heeft kan ik haar altijd ophalen en ook weer naar huis brengen. Aisha ik wens jullie een hele knusse tweede kerstdag! Heel veel liefs Peggy en Yinka

Elsje said...

Ik weet helemaal niet of je puf hebt, of dat ik dit tegen de mensen om je heen als tip mee moet geven: ik lees momenteel 'Zonder moeder' van Hope Edelman (originele titel: Motherless daughters: the legacy of loss), over wat het verlies van je moeder op jonge leeftijd doet met een dochter. Het boek helpt mij erg mijn 'stiefkinderen' te begrijpen, die eind april hun moeder verloren...
Heel erg veel sterkte, ik kan het je niet genoeg toewensen... al weet ik dat het bijna loze woorden lijken zo. Maar andere woorden heb ik niet tot mijn beschikking...