Friday, July 20, 2007

retrospectively....true stories of silly jokes

Listed below are some of my experiences a few months before I was diagnosed with CML that will make me smile and even laugh.

1. My closest friend keep bugging me to tell him the secret of keeping my weight off and I keep telling him that regular workout and carrying weight will definitely do. Always walk around with a heavily filled knapsack (thick books that presumed you could read anytime) on your back and never use the elevator. It is actually the leukemia that has increased my fat burning works.(Never listened to silly advocates!).

2. A few months before I was diagnosed, I also had a couple of occasion where I had a large bruise over my thighs . On both occasions, I didn't realize if I ever hit my thigh at anytime. I ever thought that it could be from some benign blood disorder but I never bothered to take any blood test. (Never think that doctors always clever on taking care of themselves!).

3. Previously, I used to take 'half-rice' ( nasi separuh ) during each meal. And even then I could hardly finished it. Thinking that my stomach had shrunk out from a volume controlled diet, I never knew that it was the huge spleen that already taking most of my abdominal space and causing early satiety and easy fullness after each meal. (If you are an orthopedic surgeon with an appetite problem, seek for help!)

4. Spleen again: I once had a left sided back pain and afraid that it could be from the kidney stone, I asked my fellow radiologist to ultrasound scan my left kidney, but there was none. If she could have move the scan deliberately (which I refused), we could have found the huge spleen staring at us. (Next time let the expert do the job professionally!).

5. My encounter to the hematologist (who is taking care of me now) was not a first time. I had called him before to discuss on one case that involved both of us (please read my personal experience post). And now I keep seeing him more frequent than before but this time as a patient. (Doctors should always feel that they can get into a real problem too).

Moral of all the above stories, never ignore whatever other people said even the slightest things around. Just sit and think down to the earth. If you are a doctor, don't forget to care of yourself too...please.

Wednesday, July 18, 2007

the counselling

On 17th July (Tuesday), we (my family and I) met the hematologist for a counselling. Thanks to them for being so supportive all this while, especially my mother and my younger brother and sister who has to come all the way from Johor.

The counselling was handled brilliantly by the hematologist. My wife and family members were able to follow and understood the problem and why the transplant be the utmost option now. Every single uncertainty was cleared. Having to understand is an easy one but going to accept the journey I am going to take is much harder.
Basically, I will be warded in to BMT ward one week earlier than the donor. Then a 5 days course of chemotherapy drug will be administered. This is called 'conditioning'. At the end of 'conditioning', the bone marrow is harvested from the donor before it is transfused like a usual blood transfusion. From day one admission, I will be quarantined until approximately 4 to 5 weeks when the 'new' marrow started to take over and started to produce new blood cells.
I can't imagine to be alone and isolated from the people that use to be around me especially my children. Fortunately my wife will be allowed to intermittently stay with me and hope she could lessen my isolation and keep bringing the 'outside world' into me.
What could I expect during the process?...from what I read it can be physically, emotionally and psychologically debilitating experience. Walking, sitting, reading and even talking may require more energy than what could I spare. And thinking about all the complications and how complicated it could be, will just add another pile of anxiety on me. However, the hematologist seem to be optimist and if he could make me believe him, why should I unnecessarily be frightened.
My younger brother was never hesitant in giving his willingness. I always knew that he will. For the information, I have another 4 siblings ( one elder brother, one younger brother and 2 younger sisters) and having a 35% chance of matched blood (HLA typing), I was lucky since he has his blood HLA-type matched. On the contrary, the rest of my sibling matched among themselves.
The counselling ended after one and a half hour. Ironically, everyone in my family member were in cheerful we always do. Especially my younger brother who always be the center of attention (when it come to making jokes). I remembered how naively he asked the hematologist if his smoking 'trait' will be passed on me... and cynically the hematologist answered that he will and stop smoking, he advised. At the end of the counselling session, everyone keep giving me support. I have a clear and prepared mind now. I just have to mentally prepared and cross my finger and leave it to the God Almighty.
The time will be around first week of September and a few more investigations and check ups need to be done. Hem.. I started counting the days....

Monday, July 16, 2007

my two kids danial and ika

Danial is 7 year old and Ika is 3 year old

Saturday, July 14, 2007

good thing sometimes doesn't last long

I was started on Glivec (Imatinib Mesylate) in less than a month after I was diagnosed and that was considered fast. I was on Hydroxyurea only for about 3 weeks before Glivec drastically reduced and normalized my white cell count in a matter of months. I know a few patient that has to wait many months before their application for Glivec through the GIPAP programme being approved. Thanks to the hospital that supported my medicine supply. For your information, an average cost for a person to take a standard dose of Glivec is about RM8000 per month and this is definitely not affordable to most Malaysian with an average income. That is why we are so thankful to Novartis for being supportive through the GIPAP programme.

My first repeated bone marrow test was done after about 6 months taking Glivec. It was a joyful time for me when my hematologist told me that the remaining positive chromosome of CML cell was down to 33%. He would think that I will do well and he expected me to be in complete remission in a year. But good news never last. I had another repeated bone marrow test after one year of treatment and the result had upset me and my hematologist. He advised me to have a mutation analysis and PCR test in Singapore as to identify what is the problem and to confirm the earlier result. So I went to Singapore a couple of time and it shown that I had a mutation that could explained why the response is getting slower.

That means that I am left with other option which is Bone Marrow Transplant. Through a latest development of newer drug trial, I was explained that I could be one of the candidate but having to know that I have a mutation i.e. my gene could be 'unstable', I am at risk to develop another mutation with this new drug after a period of time and when it happen it could be an endless problem.

The other reason for not to delay BMT anymore is because I am still within the "golden time" i.e still in less than 18 months after diagnosis and having said that I am a good candidate (young recipient and donor) I should go for it.

Scared of transplant? Obviously I am scared especially after I knew that all the complications associated with it. I read and read and the more I read, the more I am getting scared. I stopped reading now. May be I should listen more to my hematologist. I should listen more on other people that always tell me its going to be okay.
The date is yet to be confirmed but its going to be in August 2007. Definitely I ll be taking a career leave for about a year and sadly I could not go to San Diego for my fellowship training which I have already confirmed the place in July 2008. Anyway, I am all out to get fully recovered so I could go back to my family, friends and career.

As for today, I am still working. I have a chance to go for 'umrah' last month and alhamdulillah I got to pray a lot and hope God will give me the strength to go through the BMT and out from it sooner.

Friday, July 13, 2007

pictures galleries

Below are pictures of my self, my family and friends.

My figure used be this size (obviously this was after I successfully get rid some kilos of unnecessary accessory from my body). I didn't have a digital picture when I was overweight (ehm....).

This pic was taken a couple of weeks before I was diagnosed. We did a birthday party/ prayer for my 2 kids since their birthdates are closed to each other. My figure resembled when I was medical student- 65 kg. I lost about 10 kg.

My pics with my two kids when we went to Langkawi a few months after I was on Glivec (the CML medication). I gained back my weight with little extra...and further extra now.

And this pic was taken after 8 months taking Glivec (during our first CML group gathering). I am getting fairer and fairer. Thanks to the 'side effect' of Glivec. The other side effects are transient intermittent facial puffiness/edema, nagging night legs cramps, upper limbs edema which were quite tolerant.

The latest pic of mine with Dr Ng (Malaysian Hematology Society president), Dr Vivek (Novartis Oncology representative), Pat ( the founder of Max Foundation) during the 2nd CML gathering in Malacca- celebrating 5th anniversary of GIPAP (Glivec International Patient Assisted Program). * the cake is too small right!

My beloved committtee members of MAXFAMILY. From your left Sister Tan (Transplant Ward Sister), Ghandi, Shikin, Sahimi (Painting Artist), Fan, Jatt (Shikin's husband), Razmi, me and the smallest girl and most hardworking Mei Ching (the Max Foundation representative of Malaysia). I always admire their enthusiasm.

Thursday, July 12, 2007

my personal experience

I always like to tell everyone my own "unusual" or rather mind-opening experience that happened to me not long before I was diagnosed with CML.

I met a patient who was reasigned to me (since the original surgeon in-charged was abroad for further study) for a problem of infected nonunion of tibia (leg) fracture. On top of that he also had a lymphoma (a kind of lymph node cancer) diagnosed before he had an accident. Not like other patients that I used to treat, he, somehow had catched my attention a lot. Eventhough, I started to forget his full name, I can still clearly remember his face, the way he concerned over his illness and how passionate he was to get fully recovered.

Day by day, the lymphoma had burdened and further weakened his body and being the surgeon in charged of his leg problem, my hands were tied and I couldn't do much procedure or surgery which I had planned earlier. Everytime a surgery was planned, his condition did not allow especially after his diagnosis was revised to an advanced acute promyelocytic leukemia. I started to emphatized deeply on him and started to pray that his leg condition will get better even without surgery, so that he can concentrate on the other more important illness that he was suffering from. Yes, God is Great. Somehow the fracture united and the infected wound healed. But, that was the last day that I saw him lying helplessly beside his tearful mother. (I almost broke down for that very moment). He was still able to smile at me and said thankful to God because his fractured leg had united. He knew that he will be going soon and expressed his thankful to me. I left the ward speechless and trying to put myself in his shoes and how bad the feeling will be if I am the one. I left it to the God, knowing that He is always Great and I did pray that he will be blessed by Him. I did not want to know when and where did he passed away since it was too hurtful. (For muslims- AlFatihah)

So, when I was striked by my own leukemia, again, I praised to God. Still in the state of denial and disbelieved, I felt that I should not questioned Him on why He has choosen me to have this illness.

Monday, July 9, 2007

the new chapter of my life

People always says that anything happened to us (good or bad) should be taken up positively. When I was hit by the diagnosis, I realized a lot of new things and experiences came into my life.
First, I got to meet and being called by all of my old and even my childhood friends and they all came all over the country. Yes, they are good friends and keep telling me to stay stronger and tougher and I know that they all are caring.
Not only I met up my old friends, I got new friends. A couple of months after I knew my illness, I was invited by a volunteer to come for a small meeting with other CML patients. I got to know each one of them sceptically, since we really didn't know what was the purpose of the meeting then. But, having a common interest among us make everything seems easier for us to get close in a shortest time. The meeting went well and it actually the first step of forming the first ever CML support group in the country. It went so well that we were able to form the committee on that very first meeting and guess who was elected as the president/ chief or whatever? Just because I am a doctor, I got the job after being persuaded. Was it fair? Anyway I took the challenge. May be they were right, and I told them that being a person elected is a responsibility rather than a chance. If I loose my responsibility, they better get a new one.

Time flies, and the committee strengthened. After a few meet up, we successfully gather a first ever CML patients and their families in one big meeting. I never knew that the response was so well and we all felt so excited about it. People all around the country came and they expressed their thankful of having such meeting. We listened to educational talks, we mingled and chatted around and more importantly we started to develop family among us and we call it MAX FAMILY.

And in the next couples of months, we had organized another bigger event and the responses were tremendous. The ties among the "family' went stronger. We listened, participated, laughed and even cried during the meeting. We (the committee) never thought that we have gone this far in less than a year and felt that the responsibility for CML patients and their family are getting tougher and heavier in the future. Thanks to all my beloved committee members!!!. I always tell them and other CML patients that being the person elected had given me a whole great new experience in my life which I never thought of.

Saturday, July 7, 2007

about my self

I am 37 year old orthopedic surgeon (a kind of doctor that fix the bone) by profession. I am marrried with a pair of kids (Danial 7 y old and Ika 3 y old). My wife, Sheliza is also a doctor, still studying in Masters (Anesthesia).

I would be smiling at myself when I recalled how did it all started. I finished my Masters programme in June 2003 and that was the time I had my maximum weight. I felt so irritated when everyone told me that I was overweight. Therefore, I took the challange and started hitting the gym religiously and things got better. I started telling everyone that I enjoyed my workout but later almost the same people around me started to feel worry since I was so thinned out then. Initially I just being ignorant, thinking that my regular workout keeps burning all those fat. But later when a few people got REALLY worried thinking that I must have a kind of sickness, and knowing that I was not so regular in my workout anymore, I thought that they must be true.

Quite reluctantly, I did a few blood test (just to satisfy everyone and myself though!). Having to work in the hospital, everything was so fast and to my own TOTAL WHITE COUNT was so sky high! Then a series of anxiety and mixed feeling came into my mind and trying to be rational, I called up the respective pathologist. In less than a couple of hours, I got everything almost confirmed....that I have CML. Unable to recall what CML course of disease and latest development would be (i just could remember CML i.e chronic leukemia with a big spleen and that knowledge was during my medical student time) I called up one of the hospital hematologist and on the same day I knew that I am starting another chapter of my life.

Then, the whole process started, the new experience of bone marrow test, the HLA typing blood test (a test to know whom among my sibling that have a match blood of mine) and a new experience being in the a patient not as a doctor that I used to be)

welcome to my blog

Assalamualaikum and Hi everyone.I decided to create this blog so that my family and friends can stay in touch with my progress and latest development.
I guess everyone knows that I was diagnosed with CML (chronic myeloid leukemia) more than a year now. My family and friends has been supportive all this year and knowing that everyone do, make me feel stronger to go through any plan ahead.
We (CML patients and volunteers) have successfully formed MAXFAMILY and it has been a great experience to mix with people with common interest like I do. They gave me thoughts that I never had thought before and experience that I never had before and most importantly, the LOVE and LIFE that comes with it. I welcome any post of comments and by doing so I know that somebody is always around for me.