18 December 2010

Dooms day, in the end, doesn't stay away

Today I was once again admitted to the hospital for an Iodine treatment. The past two weeks I have had a lot of body-functional complications and new types of pains. I have had to start to catheterize and am finding it difficult to control but also to feel bowel movement. I still have been managing to stand this week, but I was so winded. I thought at first that this was because of the new tumors in my lungs. The Dr. had called me to let me know that since July there has been a lot of spreading of the cancer going on. I went from a few nodules in the lungs to an amount that they weren't able to count any more. This in both lungs.

As I practiced my Physio more and more it started to hurt in the rib area. I thought at first that I was me straining my muscles, but by Wednesday evening I started to have a hunch that it was the same pain caused by the compression of the TH 6 vertebra that was operated on earlier this year. I called Lips and requested a meeting with a neurologist before I started any Iodine treatment. And that is precisely how it went down. In the afternoon they did some imaging in the MRI scan. I was in sooooo much pain because the vibrations of the sound were strumming my painful nerves for a good 30 minutes or so.

2 hours later Dr. Lips
broke the news to me, together with Dr. Van Schie that there is progression of the tumors in TH 5 and TH 6 and that basically it is such a mess that they can't operate any more. They will try to do some radiotherapy on it to buy some time.
In effect this means that within days or weeks I am going to turn paralysed from the breastbone downwards. This means that I won't walk again, but it could mean that it will be easier to sit with vigorous paintreatment which wouldn't work with the previous situation.

From there on the expectancy is that my bodily functions in that area will slowly start to shut down. To m
ake sure that I am understood I need to tell you that this is technically speaking the beginning of the end. Now to really confuse you...I have not been given a prognoses. My Dr. says he can't because my medical history shows that I have an exceptional way of getting back on top of things. And this factor is so determining that by giving me a prognoses based on the medical facts, he would be cutting me short. In another case with another patient, the patient would already have died 4 times, and given where I am at now, they would be told they have 3 to 6 months left. Personally, I am feeling like I have more. I have to see my baby girl to High school and I have an appartment to move into. In Dutch we say, weeds never wither...Oh well. Taking it from here.

How I feel? I feel devastated. I am not ready to give up on life. I have too many things to do, too many places to go, and too many people that I really need to be with. Telling your 11 year
old child what is going on is the worst pain anyone can have to go through.
We had a huge snow storm here. I was lucky to make it to the hospital. I have never seen so much snow fall at once! Maybe heaven was crying frozen tears? After hearing the news Kiara had a huge snow ball fight with all her friends. Sounds like healthy therapy to me. Thank you so much the Klep family for loving my baby like she's your own. This night was not easy.

I don't know what the next period will bring and if I will find the time and energy to write. But if you don't see me here you can catch me on Twitter from time to time as it's easier to write in 140 characters for me. Look me up under @AishaHunkar or just simply click the Twitter button on this blog.

I do owe you two stories though....one about my TV appearance that is coming up, and one abo
ut #Twanniversary, my online virtual twitter anniversary party that was sooooo cool. Check out the #hashtag if you can read Dutch and have Twitter.

In the meantime I want to share a fragment of Radio DJ Anita
Undercover's program on Future FM. Start listening at 12'30". I'm sorry, it's in Dutch.But it's about the way I use Twitter and how I inspire people to really LIVE. She says that I have mastered the art of using Twitter's capacities to the fullest an also to benefit my life.

6 comments:

Lucy Goverts said...

Lieve Aisha, ik weet gewoon niet wat ik moet zeggen.
Wat moet het moeilijk zijn om te weten wat je nu weet.
Ik kan alleen maar in gedachten bij je zijn en hopen dat jij inderdaad tot die 'rare gevallen' behoort die de wetenschap wel eens zal laten zien dat het ook anders kan.
All my love, Lucy

Trojisliefjoh / TWITTER said...

sprakeloos ... *virtuele knuffel* ... woorden schieten letterlijk te kort ... sterkte dame

Corma said...

Lieve Aisha,

Wat heftig om dit te lezen, wat moet zeggen als iemand aan het einde van het leven is. Die zoveel wilskracht heeft en zoveel vechtlust. Wat je al schreef is dat je in een dwarsleasie komt, mag voor je hopen dat je dan minder pijn hebt.
Ik weet wat een dwarsleasie is.
Vrouwtje ik denk veel aan je, heel veel sterkte in de toekomst voor jou maar ook voor Kiara en je familie

Lucy Goverts said...

Leuk programma van DJ Anita en ze heeft zo gelijk over Twitter en over jou!!

Akerman said...

Feeling for you..

Jocie Z ROCK said...

Oh Aisha i can hardly say how sad i feel reading your posts...I simply say i can not imagine how hard it was to talk with Kiara and tell her this devastating news.. I feel pain hard for you and your family. This news is almost too much bear yet I, like you, have an amazing amount of hope with the simple fact that your doctors can not give you any sort of prognosis due to your remarkable will and spirit against the odds over and over... How many times have i thought if you since we got off the phone? hundreds! I can NOT believe your TV appearance story.. although i should say i DO believe that! Your story is one of love, strength, human endurance and yet your generosity with what you give to others never falters. Aisha, Helena and i also talked and i hope to reach you tomorrow.