HLA typing, doctor appt today
Went for HLA typing test with my siblings (it's a matching test for stem cell transplant) and has 4 tubes of blood taken, including one for my full blood count.
My blood count is looking good, with my white blood cells (WCB) going down and my lymph percentage going down as well. The irritating thing is my lymphocyte went up from 10% to 14%.
Doc says that my lymph nodes are too big and told me that I am "barely hanging in there" and say that I might need treatment in months to come. I refuse to accept that. In my mind, I have a hunch that it is not my time for treatment yet and there must be a way to make these nodes smaller. There must be! Like that time I had my rashes and my nodes went down significantly.
So I am definitely not going to accept what he said and I am going to fight with this irritating swells. Whatever ways I can find to make the swell go down, I will. I am even praying that I have rashes again (and the one I have was a pretty terrible one) so that my nodes will go down. Praying and hoping for the best now. I must fight against all this!
Affirmations: I am healthy and I am well. I am free of CLL! I have healthy lymph nodes and healthy blood counts! All is well in my world.
PS: I think the green tea really work well on the white blood cell count. Now to hope that it work well on my nodes too. *Determined look*
PSS: I was knocked unconscious again (Nah, just the painful swell on my head is back AGAIN, this time sooner than expected)! This time, the bruise feeling swell is on the left side of my head. It hurts to sleep on the left side. :/
---
Snowcloud talk about this 七星針 on her blog. I managed to find some info online. My parents grow this plant in my house for some time already, without knowing it was so good, lol. We have the orange flower kind. According to my chinese sensei this is good. So I am eating this and hoping it will make my nodes smaller. Below is some info for those interested. I copy and pasted it from some webby.
"本地的七星針有2個品種（借ah_may82和alsa的照片）：紫花滑葉、紅花皺葉（橙色及紅色花都屬這個品種）。
這種草藥一般上普遍被拿來治療子宮、卵巢方面的疾病，對于這方面的癌症也有一定的療效，以下是一些資料：
別名：緬甸玫瑰（紫花滑葉）、越南玫瑰（紅花皺葉）
原產：巴西、墨西哥
科別：仙人掌科
主治：跌打損傷、各種內外傷，民間亦用來治療婦女疾病。
功效：消腫活血化瘀，用在癌症也能起作用，若病人已經過化療或者電療，以七星針配合其他草藥，可以把剩餘的癌細胞抑制下來不讓它繁殖，提高病人存活率。
對於胃病，它也有療效，只須煲水喝。
而皺葉品種對婦女疾病如子宮癌或卵巢癌比較有療效。
紫花品種的花能生吃，有草青味，不過花心可以吃到花粉還有甜甜的味道，葉子一般上有人拿來煲瘦肉，不過每次不宜超過7片；而橙花品種 的，通常人們都是摘了葉片洗了生吃，我也試過，口感像帝皇苗，果子是酸的，花朵本來住我那帶的人都沒吃它，我手多偷拔一朵來吃，結果 發現... ... ... ...
它的花瓣是甜的
不過老年人，體制虛冷的人就不能吃太多。
紅花皺葉
紫花滑葉
果實
Short update
Since people are writing what they eat to help their condition, I will write a short summary of it later too.
But now, a short one.
I dislike CT Scans and bone marrow biopsy.
I remembered crying like a baby during my bone marrow biopsy. They basically give u an anesthetic at your hip bone area at the back to numb you, then take a thicker needle to drill through the bone to get the marrow out. It dun feel good at all when they try to push it into the bone and your whole body is shaking from the push. :(
And my first CT scan, I did it alone. My parents weren't with me and my bro who was supposed to accompany me came late so I went through the whole procedure alone. I was the youngest, and the only one without anyone there as support. I remember feeling hot and cold and I always remember that horrible liquid they ask you to drink and the thick needle they insert into you. And lastly that weird liquid up the rectum that made me diarrhea the whole morning.
Just got reminded again when I read it on people's blog and on a book. I really wish I dun ever have to go through that again.
Amitabha. Please give me your blessings.
I am healthy I am well, I am free of CLL! :)
New lease of life
I found a CLL forum last night and was welcomed by many people in the forum. Many are CLL warriors, some are CLL caregivers. There's so much info in there. About alternative healing, like green tea (ECGC) was found last year that it stopped the growth of leukemia cells. So now, Mayo clinic in USA (I supposed that was the most renown hospital for CLL fighters) is doing a clinical trial on the use of green tea extract on CLL fighters.
Some people online also stated that after taking green tea capsules, their white blood cell count has stabalized and stopped rising. I had been taking green tea supplements since last yr but my counts are still progressively going up. But now that I know that it is exceptionally good for CLL, I am more positive about this and I am sure it will help me with my counts in my next blood test this month. Plus my bro has just suggest that I increase the dosage of green tea pills from 4 per day to 12 per day, I am hoping it will really be useful. My bro is a pharmacist and I do hope that this green tea pill won't cause any toxicity if taken in excess.
Then there's people taking about stem cell transplant (bone marrow transplant). I used to be very doubtful about it cos there aren't many successful cases around, at least not in Singapore. But reading how some people fare with their stem cell transplant, I am gaining hope for this. I am starting to see the light and the end of the tunnel and truly believing that I will be able to overcome this and live till a ripe old age. :)
Now with that positive thought in mine, I also have to start conditioning my mind because health is mind and body (and soul as well), and because mind decides your reality, I will be constantly positive and will start to stop always thinking about my condition and start putting in positive thoughts that I am healthy and well into my subconscious.
I feel I am truly blessed this 2nd half of the year. I got a wonderful job, a great chinese sensei, and a forum full of warriors to fight along side with me.
Now I know I am truly not alone.
N of cos. I have a good caregiver to me. My gf. :)
I am going to fight this fight with all my might now!
CLL Forum
I am now on a CLL forum. And found this amazing lady who talked about holistic approach to treating CLL. It's more towards the Louise Hay school of thought about mind decides it's own reality. That your subconscious will determined what your mind and health will really be like. EG, if you think of yourself as a cancer patient and is constantly troubled by it, it manifest these thots in ur mind and make it into a reality.
I must forget that this will affect my life and release all of these negative thoughts to the universe. And starts with all my affirmations that will alter my subconscious.
My first affirmation is from this lady who had lived healthily for 12 years after diagnosed with CLL.
"I AM HEALTHY, I AM WELL, I AM FREE OF CLL!"
I found a CLL blog!
I found fellow CLL fighter!I am happy because I can read what he went through and know that I am not alone. I feel so lost with info overload of whether antioxidants are good or TCM is good or juice therapy is good or alternative therapy is good or ETC ETC ETC.
But at least now there is this guy who has the same condition and can prepare me for what is ahead.
he said this in his blog "
My spleen and lymph nodes are swollen and my neck usually looks like that of a chipmunk storing too many nuts."
Exactly how I feel now. My friends even asked if I have mumps the other day cos of my swollen lymph nodes. LOL
His recent post about CLL patients being more emotionally distressed than other cancer patients are pretty true. Other pple just fight the fight and either win or lose. CLL guys are just waiting to die. Sad huh. But life goes on and I wanna enjoy every min of it being happy.
I will overcome this.
Do read his blog. This may give you an understanding of what CLL truly is. I sometimes feel so under-understood by people who know absolutely nothing of my condition cos it is so rare. Read, and understand us, the CLL fighters. And cheer us on.
Thank you
I was knocked unconscious last night
ok i was kidding.
But I woke up this morning with a swell on my back of the head (most prob a lymph node too) and it was hurting like I was hum tump by someone fr the back. Plus with the swelling, it felt like a bua lu ku. At times I wonder was I attacked when I was sleeping. This feel too much like a bruise kinda swell than anything else.
*groan*
That means tonight I can only slp on one side of my head, the side without the painful swell.
Random thoughts on a Monday night
As I was in my office washroom this morning, I had this random theory. That perhaps our world is a big experiment for a group of scientist from another world. They serve as an omnipotent being in our universe and split our human race into different race, religion and nation and observe how we evolved. Then they would add in certain diseases, to see how the human beings overcome it.
Perhaps these scientist were an ancient race that had lost their root, thus they created Earth as the same environment as their hometown to see how human beings evolved, in order to record down how their people were like before. They add in viruses and disease to observe how human beings overcome these. With each barrier overcomed, human beings evolved a tiny level. So perhaps cancer, AIDs, diabetes are just diseases plant in by them to observe how human beings find a cure and overcome these disease. After all, human beings managed to find a cure for smallpox and Measles, which was once thought to be deadly and incurable.
Yup, really random thought, isn't it?
But I seriously think that there should be a cure for every diseases in the world. I do not believe that mother nature let out a disease without having an actual cure for it. If that's the case, earth would suffer the threat of extinction long ago, and it is something detrimental to the well being of Earth, which is something unnatural (at least to me). So there definitely should be a cure for any diseases. And I am waiting for that very day, some genius found a cure for CLL and it would be like an anti-biotic where you pop a pill and finish the whole course and you will be cured, once and for all. HAHAHAHA
There must be a cure out there. I must live healthily till then for my cure. :)
Some things I found online
Found this
hereHave not totally finish reading it, but just an extraction on what was said. The debate was whether the "wait and watch" method for CLL is good or is early treatment better for survival. It was said that CLL has no cure. The only cure is bone marrow transplant which was very high risk. So I am just waiting for a cure at this moment. So if I can live longer, there will be higher possibility that a cure can be found.
So here goes the extract:
Andrew:
I got an e-mail today from a physician in New Jersey who was recently shocked to find out he was diagnosed with CLL. While the question remains, “When should he have treatment? What should I do? Should I take green tea capsules?”
Dr. O’Brien:
What I tell people, unfortunately, is the good news and the bad news are the same. The good news and the bad news is that you don’t have to dramatically change your lifestyle or your diet or anything because there’s no data that doing any of that impacts outcomes. The bad news is that you don’t have a lot that you can do to impact the disease. Overall good health is important because if you’re in general good health, you have a better immune system whether you have leukemia or not, and you’re less likely to get infections. If and when you get to the point of needing chemotherapy, we know that patients who are in overall good health are much less likely to have complications with chemotherapy.
So maintaining a good healthy lifestyle is important, but there’s no data yet that show that not drinking coffee or drinking carrot juice or doing many things that people do impact outcomes.
Now, the green tea issue is very interesting. And Dr. Neil Kay at the Mayo Clinic has a protocol to try and look at the crucial element of green tea. I don’t have any objection to my patients taking green tea capsules, but the way I understand it from Dr. Kay is the amount of green tea that you would need is 25 cups of tea a day, and you’re not going to be able to get the amounts that in the laboratory have actually been shown to do something against CLL.
He has a very highly specialized formulation for that trial so that people aren’t taking 40 pills a day, and it becomes a reasonable question to investigate. But that trial is very early, so we don’t have any data from it yet.
Happy Birthday, Xiaodoudou
Went back to XDD's blog and realised it's her birthday today!
Happy birthday XDD. May you be happy wherever you are now.
I worked hard too
Today I met up w my JC friends and update on our lives. Then we started to talk about a very sensitive issue: salary. They talked about how their pay increment work and stuff. And I do know that all of them are earning more than me now. After all, I gave up my industry to go into a totally new one and is getting an entry level pay now. As compared to how much I was earning 1 year ago, this is really way way WAY too little.
But I would like my friends to know too, I used to work hard and used want to stay my previous job and climb. After all, I worked in banking and it was THE industry to be in now. But when I discover my condition, I guess many things shattered. My ex company was not able to switch me to a non sales job and I did not want to be under the stress of getting scolded by clients, pressured to perform, bothered by my business partners and having to work till 10pm and on weekends as well. So after my first operation, I decided to quit my job. It is something I would hv never had done if I was well and healthy. I loved my job. And I know that if I had stayed on just a few more months, I would have become the sales manager. I would have gotten a pay rise and a promotion.
But all these shattered when I know about my condition.
I stopped working because I have to go for my 2nd operation and was jobless for 4 months. Thereafter, I found a job that didn't feel right. I left after a while. And here I am, in a new industry with no experience and an entry level pay.
Dear friends, I wish you guys can also understand what I went thru. I wish I am as lucky as all of you to be able to be in a job for longer than what I had been now. I know I had a future in my previous work place but I gave it up for the better of my health. I hope you guys understand too, that I fought hard too, that I once was kinda successful before in my previous job in my sales results.
I dunno why I am writing this. Perhaps I am feeling inferior. Perhaps I am feeling 遗憾 for the circumstances I am in. Or perhaps, I am really envious that you guys are in the one job for long enough to experience several promotions and pay increase.
But I just want you friends to know, (if you ever read my blog) that I'd found a job that make me feel at home again. I hope that with my potential and hardwork, I would be able to outperform my peers and have a faster road to promotion so as to be on par with you guys again. I am lagging behind now. But please don't feel sympathetic over it. Wish me all the best and lastly pray that I am healthy enough to work towards building a good career.
To me, having a successful career is much more satisfying than many other things. I wish I can once again succeed in what I do, like I did a year ago.
May the swelling goes away
After a terrible flu and stomach flu and a bad cough that won't go away for 2 weeks, I had finally recovered from all these, only to find my lymph nodes swelling to new size again. It's really swollen. My happiness for me being able to see my jawline has been dashed. And I am praying and hoping that it will go down again.
i even hv this strange idea of getting myself a rash and hoped that it will swell down like the other time. Sigh.
Was telling my girlfriend that one day I might just lose it and take a knife and stabbed at my lymph nodes. But of course, that's just saying out of desperation.
I told my girlfriend about Molly's story and both of us cried while lying in each other's arm. I whispered "it is so good to be alive. Health is really very important."
It is sad how people will only realise that when something happened to them. Sometimes I will wonder "Why Me?" I wish I'll be able to get my answer one day, as to how people were chosen to get such a dreadful thing.
On a brighter note, I am very happy with my work right now. The colleagues are nice, the environment is good and there are many opportunities. I really think life is great now. What's left is to have a good health and I can be proud to say I have a perfect life.
