Wednesday 29 April 2009

Second infusion today

I had my second infusion this afternoon. It was quite busy at the treatment room today, almost all seats were taken and the nurses were really busy. I had my blood taken to test whether the blood count has increased. Last week the reading was 1.3 and it must be more than 1.5 to be infused again. Thank God, today my blood count has increased to 4.2. My bone marrow is quite slow in producing the blood cells and as the result, they prescribed my with something to boost my bone marrow to produce more cells so that I won't miss the three week cycle for the next infusion. It needs to be injected 24 hours after the infusion. They have scheduled for a district nurse to visit me tomorrow to inject the medicine.

This time I did not wear the cold cap. I see no point of wearing it as I lost my hair anyway. I've lost 50% of it already, I might as well lose them all. I've never been bald before, why not be one for a change! After all, bald is beautiful. Babies look sweet being bald. I've got to check with my mum whether I was bald then.

The infusion went smooth; still the same Doxorubicin and Cyclophosphamide. I should expect the same nausea feeling, taste change and sore mouth. I just need to check my body temperature everyday, if it goes above 38 degree celcius, I would have to go to the hospital. Hopefully it will not reach 38. I just have to stay indoor as my immunity is low. With the swine flu around, I'd better stay in and keep myself busy. There are lots of papers to read and writings to be done.

I reached home quite late and my stomach was growling. Luckily there were some porridge courtesy of Ina Adam. TQ Ina if you are reading. I did not receive my allowance this time; they say they have overpaid me. Well, rezeki Allah ada dimana-mana...

Thursday 23 April 2009

Sudden surge in my hits

I'm quite amazed to see a sudden surge in my hits. When I created the blog, I purposely set the hits so that I would know whether my blog is being visited or not. I presume this current surge is because of Raden, our star blogger who currently launched her book - Kanser Payudaraku. I certainly have ordered one and can't wait to read it! Thank you Raden for including me on your sidebar. So, will I be another star in-the-making? Perasan... Well, breast cancer experience is very unique; what I am going through is totally different from Raden's or others' as it depends on individual's stage, grade, HER2 receptors and estrogen/progesteron receptors. My kind of treatment is kind of unique too. Usually when one is diagnosed, the immediate reaction is to be under the knife, followed by chemo and radiation. At least that was what my sister-in-law (BC survivor) did when she was diagnosed 12 years back. She had total mastectomy including some of her glands. When it was sent for biopsy, her glands were not affected at all. What a waste...

My friend was asking me as to why I need to shrink the tumor first when I can get it removed instantly. That was a good alternative isn't it. Over here in the UK, they let the patient decide on what kind of treatment that the patient prefers. Since I'm studying, I can't afford to be away for a long time, so I told my breast care nurse that I want a treatment that is fast for me to recover, and doesn't take too long in the operation theater as I worry that I might wake up in another world and not in this world (you know what I mean - dead looo). So they gave me suggestions as posted in my earlier postings. When the Oncologist saw that my BC grade was 2/3, he suggested that I go for chemo first and hopefully when the tumour has shrunk, I'd just go for lumpectomy - removing the tumour only and not the whole breast. So, incase you are reading and you are being diagnosed (nauzubillah), don't just cepat melatah and go for surgery there and then, unless your grade is 3/3 or your type is the Inflammatory Breast Cancer (IBC) when the spreading rate is very fast like a superwoman!

Going back to the surge in my hits, this is actually what I want to share with you guys, my treatment here in the UK. Yesterday I had a call from my breast care nurse asking me how I feel and how I'm getting on with my research and so on. Since I have been on my chemo, I have been liaising with the Oncology Research and I did not go and visit her at the Breast Institute. Guess what that single call affects me psychologically...It's really good to know that they really care and in a way, it's telling my mind that I will survive. Is this being practise elsewhere? If you are reading and you have the same experience, maybe you could provide me with an answer.

I had a bad news too yesterday. Our senior when I was in secondary school, died of heart attack when he was attending a seminar. Innalillah... I think it is more tragic than having a BC huh. At least I have my warning. It's a warning that I have not done enough.

My friend was telling me that she is going away for a weekend getaway just the two of them. She said, jangan jeles... To tell you the truth, I'm not jealous at all, infact, we usually do it especially during our anniversaries. We told the kids that, mak gi course, abah teman mak (I'm attending course and the father is following me). Well, the only place that I want to go next is to Mekah. I've been there in 1998 for my Haj. Guess how much sins I have re-collected in 11 years...

Tuesday 21 April 2009

Second infusion postponed til next week

I met the oncologist again this afternoon for another biopsy. The reason for another biopsy is that I'm involved in the genetic study; the previous one was a sample for being involve in the trial, and this time is for the genetic study. I told him about the long-lasting bruises and the mass that I thought was the tumor which has spread. Luckily it's not. The needle of the last biopsy must have hit a vein and there was an internal bleeding. It will go off. Today's one is much better. It didn't bleed that much and it wasn't painful at all.

One good news for today, the tumour has shrunk a bit. The last measurement was 4.5 cm and it has gone down to 4.0 cm. The affected glands under the armpit have shrunk as he could not feel them anymore. What a relief! My graviola, lemon grass tea, yoga, ozone treatment and the prayers really help. Alhamdulillah.

The second infusion which was scheduled for tomorrow, has been postponed to next week. He felt sorry for my sore mouth and thought that it should be treated before I go for the second infusion. He prescribed for me some antibiotics and the oral rinse to help ease the pain.

I'm having 'bubur McD' today. We had our helwa gathering last Saturday and the host, Mazlina or Mama2D gave a demo on how to prepare it and we get to bring some home (like berkat for kenduri) . My two younger daughters finished it off almost instantly. Since my mouth is still sore, something soft would be good, so I cooked some.

My weight has also gone down a bit. Other people have been trying hard to lose weight and mine came down naturally. Well, having cancer is not too bad huh :-). Cancer anyone? This reminds me of the comments from Mamayati & Raden. Glad to know you, ladies. Although people say I'm a one tough cookie, a strong support from friends who share the same experience will really help...

Saturday 18 April 2009

Back to school for seminar

Boy it feels good to cycle again to school. We had a talk by Prof David E Goldberg, the writer of Genetic Algorithms for Search, Optimization, and Machine Learning. His book has been widely cited by people in the area of Optimization and since my supervisor highly recommends us to go for this talk, I thought I shouldn't miss the opportunity. It was a good talk and it was soothing to listen to the american slang again as it reminds me of the old times when I was in Oregon.

I was excited to see my colleagues again; they say I'm like my regular self, no difference at all. My scarf did a good job in hiding my other side effects of the chemo - hair loss.

I was quite sad to see a handful of hair at the bath tub hole after my shower this morning. When I comb my hair, a handful more; I guess the cooling cap doesn't really work huh. My hair is everywhere, on my clothes, on the carpet, on the pillow. I hope it won't get into our food! Other people usually shave their head during this time but I don't think I can do it. Without my hair I'd look like 'toyol', a mythical spirit in the malay mythology. Luckily, I still have my eyebrow and eyelashes. But based on my father's experience (he had chemo for his non-hodgkin lymphoma disease), every hair would be affected, even the pubic hair would drop off!

I brought back some more books from the office. Two of my abstracts have been accepted for conferences; one in Dublin in August, and one more in Bonn, Germany (in July). I now have to work hard to produce the full papers for journals. I really hope that the subsequent chemo would follow the same pattern of the first one as in between the grogginess, I manage to continue with my research. I'm not calling it a quit at this point of time as I've spent almost two years on my research. As the malay proverb says, alang-alang menyeluk pekasam, biar sampai ke pangkal lengan...

Thursday 16 April 2009

Sore mouth

It has been two weeks after the infusion, and I'm now having one of the side effects - sore mouth. I have blisters/ulcers in my mouth and it surely is painful. I can't seem to enjoy solid food and as the result, we had bubur lambuk (porridge) with lots of lemon grass in it, for our lunch. Everyone seems to enjoy it; a full pot cleared at one go, no leftover :-)

Nadia dropped by to hand in more lemon grass and I now have months of supply. If you are reading Nadia, probably you could hold it for a while and I'll inform when I run out of it :-) It has been hard without a car; we are back to square one - I walk to get my groceries and my husband has to cycle to a farther location to get our supply. What a good exercise huh.

My ozonator is here already and I'm still figuring out the best location to install it. I have recieved a little warning from a friend about the ozone treatment. Well, I have done my research and I kind of know how to weigh what is good and what is bad for me. After all, we are our own doctor. Some might think I'm stubborn for not following their suggestions. Let it be, I believe in what I'm doing. When I believe in it, it will trigger in my brain and whatever I believe, will really happen. Just like Leon Jackson said in his song :

there can be miracles
when you believe
though hope is frail
it's hard to kill
who knows what miracle you can achieve
when you believe, somehow you will
You will when you believe...

I had a call from the nurse yesterday for another appointment next Monday. They are going to do another biopsy which I really dread. The bruises from the last biopsy has not gone yet and too bad I'd have to go through it again. And if the blood count has increased, I'm due for the second infusion on Tuesday. Still a long way to go...

Monday 13 April 2009

3D animation videos on Cancer

I was googling videos on breast cancer yesterday and guess what I found - 3D animation video on how the cancer cells look like. It is here at http://www.cancerquest.org/, click on Videos and animation, and have fun learning Biology again! What I like about it is that it helps in my visualisation. Whenever I drink my graviola or my lemon grass tea, or reciting the prayers to shrink or kill the cancer cells, I can visualise that the cancer cells died like in the video.

I have already added another blog in my favourite list - Dr Hasanah's entries. I found it through Raden's link. Congratulation Raden for having your own book. I plan to write my own too and I hope it will materialise during this period of hybernation. Spring has sprung and I really need to stay indoor as I'm proned to get hay fever. Since my first chemo, I've been out once, last Saturday, to Aldi around 5 minutes walk from my home, to get some groceries. It was drizzling at that time and I'm pretty sure there is no pollen hanging on the air!

I'm doing really well with the after chemo effect. My blood pressure has gone back to normal - 106/86, body temperature at around 36 degree celcius. My taste bud is ok although I do have sore mouth. I have a good night sleep and I wake up feeling fresh. For all these, Alhamdulillah...

Tuesday 7 April 2009

Young Dracula

We were watching Young Dracula on TV yesterday and I passed a remark, "Dracula wouldn't want to suck my blood." My innocent boy was curious and asked, "why?". I bluntly replied, "because I have cancer...". The whole family burst into laughter :-)

The kids are on two weeks Easter break and since I'm grounded, and our car is a total loss because of the accident, we have no where to go. I kind of pity them as they envy their friends having to travel and go for vacations during the holiday. No worries, as long as we have each other to keep us company, it really is a blessing.

As they have no where to go, they are invading my computer and my work space. I now have constructed a new work space down at the corner of my dining room.

I'm practising a basic yoga through a dvd/book that I bought from a charity shop during my recent course. At least it helps as I heard, yoga is good to help cure cancer. I know some friends might object to this as in my country, yoga is banned by our religious belief. Well, I'm doing it for the sake of exercising and if it helps to make me feel better, why not?

E-book on One-minute cure all diseases

In my quest to know more and more about cancer, I came across an ebook written by a doctor who had 3 of his family members died of cancer. I had to buy it for USD39.95 but the information was worth it!

This ebook has given me the answer that I'm looking for. Believe it or not, every human being has cancer cells in his or her body. Mine has triggered because my body lacks of OXYGEN. In a low-oxygen environment, cancer cells can multiply into a full-blown disease. In my case, the lump has turned cancerous.

Cancer cells are anaerobic, meaning they can live in an insufficient oxygen environment. But when they are given lots of oxygen, they will die. In the ebook, the author has been preaching about oxygen therapy, namely ozone and hydrogen peroxide. I'm willing to try the ozone and have already bought an ozonator for my drinking water. Hydrogen peroxide? I don't dare to try it yet as it sounds scary...

Now that I know the root cause of my disease, I intend to treat it at root. My sister and friends have been persuading me to take Transfer Factor which they say could reduce the size of the tumour. From my reading, TF is boosting the immune system and guess what it's made of? Colustrum and egg. And how much does a monthly consumption cost? RM750! And it's through Direct Selling. No wonder the uplines are making a hefty sum of RM45K per month. Good money eh? If they really want to help, why are they taking advantage of other people's mishap? How many cows and chickens are there in this world that could produce colustrum and eggs? Going back to the ebook, in the introduction section, the author was telling about disease being a big business. Pharmaceutical companies makes lots of profits and often times the drugs do not cure the disease but to relief the symptoms so that the patients have to continually take the medicine. Nutritionist would not want to be left behind as they are taking advantage and making profits too. They would say that their products are not medicine, but supplements to help cure the disease. NONSENSE!

As far as my immune is concerned, I guess I still have a strong immune system as I feel fine with the after chemo effect. No doubt I feel a bit nausea, like a pregnant woman (although I'm not pregnant). But then again, I have experienced it five times already through my pregnancies and I can pretty well cope with it. My intention now is to really work hard on my PhD, finish it as fast as I can so that I can go back to my home country. When I get back, I would like to settle down in my hometown where there are abundance of oxygen (a country life as they term it here). I'm going to breed my own chickens and fishes or cows for that matter, and plant my own vegetables. I want to lead a healthy life and who knows I might live to see my great grandchildren...

Friday 3 April 2009

My first chemo

I had my first chemo last Tuesday 31/3/09. These are some snapshots on how it's done. It's not that bad. The drugs are injected into the vein. One good thing being in the cold weather, when the nurse poked the needle, it's not that painful at all.

I'm wearing a cold cap to help reduce hair loss. It reminds me of the Combat movie when I was little, hence I name this cold cap "topi combat". It is worn 15 minutes before the treatment, and it has to be changed every 45 minutes throughout the treatment. For the whole two hour duration, my husband has got to run upstairs to get the cold cap from the freezer.

These are the drugs that got into my vein. The red coloured one is Doxorubicin; two tubes of it. In between the nurse injected in the anti sickness medication. Then only the big bag of Cyclophospamide is dripped into the vein. Surprisingly, I don't feel hot at all. With the saline (salt water) and those much drugs that got into my vein, the one thing that I need was to pee. Luckily the nurse warned me that my urine might be pinkish. True enough, I had a pink urine! Put some milk on it, it would become "air bandung"... one of our country's favourite drink :-)

The cold cap needs to be worn 45 minutes after the treatment too and while waiting, the nurse made us coffee and offered us biscuits. What a service! No way we can get it anywhere else.

How is my after effect of the chemo? Right after, I felt a bit dizzy but I can walk around the house at ease. My taste bud is also alright; I was really hungry when I get back, luckily Nadia brought me "sambal ikan bilis" and her crysenthemum tea...

I had problem during the night whereby the whole body felt numb; even my face felt "semut2". My joints were aching and I had a terrible time sleeping. I've been tossing around for almost two hours, can't get to sleep, envying my husband snoring, that I went down and made myself a hot chocolate and oats. I applied my aloe very icy cool to relieve the aching and Alhamdulillah, I managed to get some sleep.

Yesterday and today is also fine. I notice that my taste bud is getting funny, so when I cook, my husband gets to taste it. Luckily I don't have sore mouth yet. I guess the lemon grass tea helps. I've been drinking lots of fluids and taking lots of fruits. Aldi is nearby our house where we can get good supply of fruits; kiwi fruit 6 for 49p, apples 49p, grapes 69p, oranges 69p...oww!