What do I do when I am at home
Ok something light hearted.
What do I do when I am at home recuperating1) I will watch food blogs recipe videos. I am obssessed with watching food recipe videos, particularly from this guy call Chef John from Food Wishes.
http://foodwishes.blogspot.com/
I will then try some of those easier recipes or those where I have ingredients at home. They uses a lot of spices which I am unfamiliar with. Like cayenne. What does this spice taste like? Hmm I wonder.
2) Then I will go to look at my shares and hope that with my sheer mental strength, those shares I bought will go up. Yeah... practicing on my mental power.
3) Find random movies to watch. Any nice recommendations?
4) Scare myself silly by reading medical reports and statistics on my situation. But then I have to remind myself that those reports are based on people 30+ years older than me and in an ang moh environment.
5) I blog. I blog so much more now. Like I am having a written diarrhea. In a good way I hope.
6) Listen to heart sutras from youtube. I should try meditation soon. Ommmmm.
Dream
Last night I had a good sleep and when I woke up, I thought I will be at home. But I was on the hospital bed. Like I am stuck in a dream I do not want to be in...
change in chemo regime again
Did my CHOP chemo regime. Doctor Yvonne wants me to go through the ALL chemo regime 2 weeks later call Hyper CVAD + Rituximab, which is the stronger dose of CHOP. I also have to do IT chemo, which is low dose chemo injected into the spine gap to prevent the lymphoma from going into the brain.
Will be taking every day as it is and will be praying to Guan Yin and God of all universe for all the blessings and recovery.
I have a good doctor, emotional support from family, friends, and partner and my company.
The last is sheer determination to win which will come from me.
Please pray for me.
Richter's Transformation
My CLL has gone through a richter's transformation and became large cell lymphoma, with CLL cells still in me.
Was devastated the first day. But now I'd decided to fight this with optimism.
A new chemo regime has been given to me and I am having chemo now as I speak.
Original regime is bendamustine and rituximab and I will not lose any hair
Now is a slightly more toxic R-CHOP regime and I will lose all my hair. Oh well. I take it as a free brazilian wax.
Post number 190
Can I just say that putting a port (needle) into the vein is so bloody painful? I think it is more painful than a lot of things.
And I have to get ready for it next week. Hope my veins can take it and please don't collapse!! I do not want a hickman's line so soon! >_<
Thank you mum and dad!
Really thankful to have supportive parents. My dad was with me the whole time when I did my day surgery on Monday. He even let me use his medisave! T_T
And my mum has just been cooking for me and have been so accomodating. And she did not nag at me when I go out to buy Starbucks just now! haha.
It is so important to have support from family members.
And of course, I have lots of love from my partner.
And my friends.
Thank you everyone!
Test number 1
Doctor wants me to go through a lymph node biopsy to make sure my CLL did not go through Richter's Transformation, which is the process of CLL becoming lymphoma.
Anyway, she referred me to a colleague of hers, a very nice Dr Tay from ENT. He was very polite and patient and just plain nice. Very nice guy. I was too freaked out to really ask him questions and stuff.
Had a local surgery which lasted about 30 min long. Long, gruelling process. I could not feel the pain, just a little soreness and a lot of tucking and BURNING smell.
Now that the anesthetic is over, it is beginning to hurt in a dull, aching manner. I tried lying down in bed to rest, but there was so much pressure from my wound (at my neck area), that is is quite difficult to rest.
I am praying for a speedy recovery for this. It is really irritating me to no ends.
At least this is over and done with.
Counting Blessings
And so, my doctor sent me an email today to tell me that the clinical trial is no go, and I have to go to do chemo this week.
To be honest, I am not mentally prepared. So I told her I only want to start on 19 May. Because that is the date given by my Feng Shui master... and it is also a date after Vesak Day, so I can do some praying before I get admitted to hospital.
Am I scared? Of course I am. But I always try to see this as just another trial for me. And always to count my blessings.
I was in SGH last Friday for a doctor's appointment and on my way back, I met a lady, maybe younger than me, in a wheel chair. She was alone and she was queueing to take the shuttle bus out of SGH. She needed help onto the bus and her legs were trembling a lot. The bus broke down on the next station, and we have to help her down the bus and onto her wheelchair again.
And I thought to myself, yes I have Chronic Lymphocytice Leukemia. But I can still walk and eat and meet my friends. In fact I am very fortunate to still be able to function as normal. There are so many unfortunate people out there and it is no time for me to be mopping and feeling sorry for myself. I know I am very fortunate to have my family, my partner and my friends, wishing the best for me.
And with that, I know I have to go through this trial with a positive mind and a strong heart.
Always learn to count your blessings. Because you will never know how lucky you are till you learn to be appreciative.
