Taken from my old blog. New regime / protocol [23 Oct 2008, 05:31:24 PM]
My scan and blood tests results were out. I went to the clinic on Tuesday. The cancer marker CA125 has risen to 106. The scan showed two of my tumours being larger than previously. They caused one of my kidneys to be enlarged too, though I don't feel any discomfort. Maybe just "sng sng" feeling sometimes. The rise should not come as a surprise as the marker has been on the up trend during the last few cycles.
My blood count is not pristine anymore. My white blood count is still below the normal range.My red blood count is also marginally low. I was still on oral CTX and MTX without the avastin. Dr Chia concluded that the two oral drugs without avastin do not work out for me. I wanted to rest some more but he felt it is better to start this Friday on the new regime. He was considerate and understanding, seeing my anxiety, to suggest consulting Dr See for her opinion. We did, on the same day. I laughed when he said the new regime would not cause hair loss and I should be able to tolerate the side effects well.
Dr See's view is the growth is considered slow. She is still keen to be put me on oral drug tamoxifem later on so that my bone marrow could recuperate. She said to monitor my response to this new regime and would consider adding another drug (couldn't remember the name now) to enhance the effectiveness. Dr Chia's suggestion was to have avastin added at a later time.
The new regime will commence tomorrow. Oxaliplatin is a new drug I am using. I had gemzar before in 2005 with carboplatin (4 cycles) and with cisplatin (later 2 cycles). I remember I was so bloated that I almost couldn't fit into "M" size pants. The drug gemzar when going into the veins would cause this "burning" sensation and I needed hot packs to be put on my arms. My veins after that regime were constricted and had many "valves" (spelling?) that the nurses had a hard time looking for "big" clean veins to plug me. Needless to say, what I dislike most about this regime is the numerous needle prickings.
Before regime starts: blood tests (needle poke #1) Day 1 : chemo infusion for one and half hours (needle poke #2) Day 8 : blood test + chemo same as day 1 (needle pokes #3 and #4) rest one week (day 15-20)
Day 20 : blood test (after chemo blood tests) (needle poke #5) day 21 : doctor review + chemo possibly on the same day
This is an overdue entry. I had meant to do a profile on myself with regards to my health, eating and diet habits. However, I doubt the usefulness of such an entry. On Sunday, churchie SG was teaching in Sunday school and commented (relating to the morning's topic), "I had cancer because I din watch my diet. Snowcloud watched hers and yet got it too."
A few years ago when I first saw Prof Tay, he lamented that till today doctors couldn't put an exact profile on cancer patients. Whilst it is easy to do a profile on heavy smokers/drinkers, people with genetic and family history, people with unhealthy eating habits etc, it is very perplexing why some others contract unrelated dreadful illnesses. Take for example "Shuai Ge"'s late sis-in-law's sister a non-smoker with lung cancer and with no second-hand smoke environment. Nobody has the answers. It takes me awhile before deciding on this entry. If you have been following my blog since two years ago, it wouldn't be hard to know some of my eating habits.
Eversince I read my brother's health education textbook in primary school eons ago, I have been interested in diet and nutrition and health related issues. In my years where internet access was unheard of and borrowing from a library wasn't so easily accessible (perhaps because I was too young to know of such an option, plus books of such topics weren't so popular), I acquired and accumulated my knowledge from whatever print media I read (aka Chinese newspapers and magazines). I don't just read for head knowledge. I believe I have a bland tongue which explains my little tolerance for salty and oily food. I practise what I know.
Since young, I love eating vegetables and fruits. Before I was sick, there was an unwritten rule that I only cooked fried food once a week, had fast food only once a month or on special occasions, canned food (eg luncheon meat) occasionally and I didn't stock up on frozen food. I read food labels like a hawk. I spent more on vegetables and fruits than on meat stuff. My cooking methods were varied since I only fried food once a week. The food I love to eat are what most say highly beneficial and with anti-cancer properties. My friends used to tease me whenever I had laksa/curry sans the gravy or soupy noodles minus the soup (because it was laden with msg). There is a joke in the house because whenever my mum cooks soup for me, she has to specify it is all natural ingredients with no added msg. I relied more on condiments and stuff without compromising on the tastes. I think you know what I mean.
I treasure my organs which are hard at work for me. I used to drink a cup (sometimes two) of plain water in the morning before breakfast. When lemons were the "in" thing, I added the juice of one green seedless lemon (ya, the expensive and at one stage hard to get type) to my water. (Anyway, I love lemons which I often used in my cooking.) It helps to cleanse organs and flush toxins out (not that I had many at that time). Whenever I had headaches, I didn't pop in painkillers. My remedies were found in my pantry. I used to take panadols when I was plagued with migraines in jc and while working. After I learnt that the liver has to work hard to rid it, I sought alternative remedies. I found rubbing ginger on my temples and at the back of my neck ease the tension and pain. My friends would tell you how I hate to pop in painkillers, even till today. "Shuai Ge" oftentimes had to persuade me to take tablets whenever I was in some kind of pain or suffering from nausea or gastric pains. I super scared of taxing my liver and kidneys.
Some people attribute stress as a major factor in contracting cancers. I would like to think mine has nothing much to do with diet. Although I have no answers, I do know my immune system is down. What I am currently doing is to boost it up (hopefully) and gives me a fighting chance against this illness. I am not against any form of profiling oneself. Infact the books I read have a checklist for such a profile to determine the possibility of one getting the illness. Some hospitals have a screening/profiling test. I guess prevention is better than cure and have read some people undertake steps to minimize their chances of getting it.
Knowledge is important pertaining to your illness and body. It's difficult to sell me any health supplements or products because I am always suspicious and cautious. Moreover, when you are sick, you can get quite desperate to be cured (don't let others capitalise on that). I believe what work for others may not be effective for me. And for every product there is bound to be (at least) a successful story/case.
While I am now trying to increase my immunity, I hope too my current drug regime works to control my tumours. And staying cheerful and positive helps. "A cheerful heart is good medicine." Proverbs 17:22
As I stepped into the doctor's clinic on Wednesday, he was frowning. Perhaps he had just recovered from a bad bout of diarrhea (which I learnt of it from SSN Tan) or it was my latest scan results. My cancer marker sort of plateau-ed at 120, not much change from the previous one. So, what did that mean, I asked him.
He went on to show me the scan results. The good news was the two tumors shrank slightly, which he reckoned at the early two cycles of using avastin. There was a rather stubborn tumor somewhere on the lower intestines which had grown slightly (compared to the previous scan done last August). This is cause for concern and explained the rising cancer marker readings. I spoke half in jest, "So stubborn leh, these cells. Why like that?" He replied, "Maybe resistance clones." We spoke at length the various options and he explained what I could hope for (which frankly isn't much). At one point he suggested this chemo drug which would cause hair loss in patches. PATCHES??!! So ugly... eeeeeks I don't want... You could imagine my strong reaction to this especially since I just did my hair. No way lar, doc. Anyway, we decided I would go for one more cycle of current regime. He apologised for not being able to give me a good CNY. Ah, that's alright, doc, not your fault.
I sms-ed Ser that evening to let her know that I had to leave earlier after breakfast for my iv avastin at NCC. It was nice of her to give me a lift to NCC after our usual breakfast and marketing trip. I arrived almost 45 minutes earlier before my appointment time. Couldn't explain my fatigue and sleepiness, I actually dozed off on the sofa while waiting for my turn. I slept through the short half hour drip and didn't even realise "Shuai Ge"'s arrival. We proceeded to Dr See's clinic after lunch at our usual favourite yong tau hoo stall.
Looks like the inevitable has to happen. Dr See suggested the operation, the one I resisted. She felt that it was to give myself a chemo-free holiday after the operation and also to let the body rest. What we are doing now is continual pumping of toxins into my body to keep the tumors at bay. She felt that the cost of using avastin for that little incremental benefit is not efficient (same opinion as Dr Chia's). What the operation entails is removing of all tumors visible and then continue with more chemotherapy thereafter to try eradicate residual cancer cells. Some timelines, options, surgeons involved, risks etc were mentioned and discussed briefly. Anyway, I still have time to consider and she felt this is the best option for me. Not everyone can have that operation. Age, number and size of tumours, and general health conditions are to my advantage. BUT to stay in ICU and the whole thing about operation, and we are talking about MAJOR operation, is enough to make me shudder. If this is my first operation, I probably won't bat an eyelid and agree. I had my first almost four years ago and went in without knowing what to expect. Not this time. Terribly frighten of the post-op pain and recovery. Yes, my threshold of pain has seriously dwindled to its lowest point.
During the discussion, "Shuai Ge" brought out a yellow-tinged paper with Dr See's writings. It was an outline of my options when we first consulted her almost 3 years ago. I have literally tried out all the drugs she wrote. Like she said, she has not been wrong except one which I drew no response. We left the room after letting her know I would give the option much thinking through and prayers.
Well, knowing me, if it is the ONLY option to go, I would do it. To be operated on in exchange for a hopeful at least one year or more chemo-free holidays. However, I never say I won't resist, make noise, whim first, "deh" plus other "resisting" actions. There are still other (somewhat minor to some but major to me) considerations. And the timeline? May. Sighs. What a way to welcome in the year of the Rat. I am behaving like a mousy now. *resists operation mode*
P.S. After a little thought, think the cells take abit after me: stubborn. Baaaahhh
Estella dropped by on Saturday. It was because her student (who lives in my block) was not home and she had already torn a carpark coupon. Ah, sweet Estella. Our friendship went all the way back to secondary school; we were sec 2 classmates. We got closer during the last few years. If you think I am brave, you should see her.
I am very thankful our paths crossed eight years ago. She is one tough lady and one whom I admire alot too. Before I was sick, we used to go for movies together, especially during the holidays. Infact before I discovered my illness, we went for a movie together. She sent me an sms to say that we should book our tickets through the internet for our next movie. Imagine her shock when I replied her that I wouldn't be able to watch movies for some time to come and that I have cancer. She visited me many times when I was home recuperating after an operation and during my first chemotherapy. She prayed with and for me, passed me lotsa leftlets about healing and healthy living, brought me to her cell group and got them to pray for me. She bought me the book "A Purpose Driven Life". I was the one who nudged her on taking up BSF classes. And she in turn, nudged Amy.
I believe God made our paths cross. She has been a great encouragement to me. She treats me as if, how should I put it, I am normal. She shares with me her problems, just like before. She asks me for opinions on certain matters we both face or even those which you would only share with close friends. I am grateful she values my comments and viewpoints. Despite what she is going through, she makes time for me (as well as another friend, Amy), to ask about my progress. And she is always so cheerful, embracing life with so much vigour.
Whenever I think of her, it warms my heart to have such a great friend. One who looks beyond her own problems and yet makes time for others who are in need. One who still believes strongly in living well and happy, not looking at her own circumstances. One who encourages others who are disheartened. One whose strength and cheerfulness I will remember fondly with admiration.
It is said, a close-by neighbour is better than a distant cousin. How true. My breakfast "kakees" are actually my neighbours who are also my friends, except Ivy who doesn't live in this block. Jen has always been looked upon as the "big sister". She is the one who knows almost everyone in this block and connects all of us. In the past we used to have block parties at the void deck, potluck style. However, the big group had dwindled to just the four of us.
When I was first diagnosed with cancer, it took me a while before telling them. Janet came to know about it through musketeer sheep. When Jen heard about it, she couldn't sleep that night, wondering why it had to happen to me. Someone who has always been careful of her diet and one who believes in natural remedies. Jen, Liz, Grace and Ser had always gone for breakfast together, even before I was ill. During the the first chemotherapy I had, they were always dropping by before and after my treatments to cheer me on. Not forgetting the food they bought or brought or cooked. Jen has been most helpful with cooking and marketing. Even today, she teaches the helper how to cook some basic dishes. Her helpfulness extends to the other neighbours as well. What touched me most was the time she cut her hair as short as mine when I went out with them without my wig. It was funny when people thought we were sisters.
Ser is the one who drives us around every week for our breakfast outings. Even if it is only the two of us, she still brings me out, having breakfast together. Liz is the cheerful one. Janet who doesn't join us for breakfast would always pop by to chat. She is one of my emotional garbage bins. Our weekly breakfast outing has become part of my routine and life these days. How did I get myself into this group? I asked them. Last year, before my relapse. It is amazing how we have become so close.
We are not of the same faith, but it doesn't matter. Ser and Jen's significant other would send me to BSF classes when "Shuai Ge" couldn't do so. Even if it meant going out in the rain. The neighbourliness in this block reminds me of "kampong" days where everyone helped and looked out for each other. I used to ask God why He didn't let me stay in some private landed property. Now I know the reason.
Edited: I should add that sharing of food with friendly neighours have helped to widen each other's tastes and acceptance of new flavours. Musketeers should not take for granted their current wide food range. Jen is the "kueh" and "noodles/beehoon/hor fun/rice" expert. Ser is a vegetarian but she makes nice sushis, mee siam and vegetarian food. Liz cooks delicious Hainanese chicken rice, "chop suey" and a mean cabbage with long bean rice (one of my favaourites). Janet used to share with us auntie's curry chicken, curry yong tau hoo and dark sauce meat. And me? The daring one who tries and experiments the "ang moh" recipes. The musketeers indeed are the blessed ones. You could say these breakfast "kakees" along with some others help shape their tastebuds.
If the thoughts seem incoherent, blame it on the super swollen tongue with several big ulcers and pain.
SH was the one who brought us into this church. We have been attending its services since then. Through him and LX we got to know the other church brothers and sisters. They have been a great supporting group too during the last two and a half years.
I was touched when "Shuai Ge" told me that they have designated half past ten every night to pray for me. After my operation two years ago, several of them came up to me and extended their hands of friendship. Some even sourced relevant books for me to read (and those Chinese books really helped!). I remembered when I embarked on laughter therapy, they sms-ed me jokes (they still do so now) and one lent me a joke-book. We do meet outside of church activities for sharing and encouragement. They are also the ones I always sent prayer request sms-es to. Though we may not have known each other for a long time (most of them have known each other for more than ten years), the ability and open-ness to share and the gradual understanding of each other have certainly brought us closer. What is most encouraging to me is knowing "Shuai Ge" has his own support group in them too.
LX's two sisters are part of this group as they are in the prayer sms-es loop. They have been very supportive. Infact her pastor brother-in-law visited me when I had my first chemo. Like I said, it takes a "whole kampong" to nurse me. By that I also mean my friends and some of their family members. LX and SH did quite alot for us, despite their own busy schedules and commitments. They never failed to come to our aid, especially during emergencies. They even helped celebrate the musketeers' birthdays. Recently a church couple spent some time talking to musketeer yangguo about their findings and his education options. They are not obliged to do so, as I told yangguo, but they did. Such kind intentions and thoughts are much and should be appreciated (not to be taken for granted).
Sister Rue never failed to cheer me up with her flowers. It was through her mother-in-law that I was guided to seek medical help in SGH and got to meet my surgical onco. Aunt Tan always hugs me whenever she sees me in church and would speak gentle words of encouragement. It must also be mentioned she and sister Rue would visit me occasionally.
Ah! How can I ever reciprocate such kind gestures? Not that they are seeking any form of gratitude. All the sweet people I get to know and meet have certainly made my journey a more bearable and memorable one. And certainly one of gratitude and thanksgivings.
There is an African saying which says, it takes a whole village to discipline a child. In my case, it takes a whole "kampong" to nurse me. As I have said in my earlier entries, my blog would not be complete without entries about my support groups, the group of people who have journeyed and are still walking with me through this dark valley.
If my blog is only about my illness, I think, after a while, people will get bored reading it. Haha... Let's see... there are several "support" groups who are in this battle with me. In no particular order of importance or preference or whatever, they are *drums roll*:
(1) churchies,
(2) breakfast "kakees" and sweet neighbours,
(3) online friends who are now real life friends (*muacks*) (I call them young youth group),
(4) long time, life long secondary school friends (also prayer buddies, co-group),
(5) ex colleagues and their significant other halves and family members,
(6) good friend, Estella and her cell group members who are praying for me too,
(7) "Shuai Ge"'s support group which includes colleagues, ex colleagues and friends,
(8) SSN Tan and counsellor Eng,
(9) besties, Joyce, Lyn and Fiona,
(10) moblog community,
(11) other friends not in any of the above groups and
(12) families.
Wow! I didn't realise so many groups till I actually counted. How blessed I am indeed to be surrounded with so much love, care, concern and encouragement. ^________^
I think I shall begin with my co-group, my secondary school classmates. If you have been reading my blog, they need no introduction, not much anyway. Our friendship dated wayyyyyyy back... even longer than the ages of some of the young youths. (now, now, stop counting how old I am... =X)
The seven of us (me, Anne, SC, SK, TA, Nanz and CM) were in the same faculty in NUS. Included in this group is A who lives in KL, Malaysia. SK has literally dropped out of the communications loop. Nanz is now an American citizen and she keeps in contact with her occasional emails.
Despite their busy schedules and commitments, they still make an effort to keep updates on my progress and well-being. They are also my prayer buddies, something we all learn to do since secondary school days. Our recent gathering was last Saturday, organised by sweet Anne.
I was baptised last year on Labour Day. All of them (except Nanz who was in the States) turned up, including our ex BS leader, KOH and his wife. A flew down from KL and booked herself into a hotel for the sole purpose of witnessing my baptism ceremony (at her own expense). I was so touched. It was certainly nice to see everyone that day, especially KOH who hadn't seen us in years!
What's so special about this group is that we have been such long time friends that it is easy to pick up from where we left off. And we understand each other in an amazing way that I can't really put it into words. We have long done the acceptance part. We are unique, special, asserting individuals and yet we harmonise as a group. I reckon I am indeed blessed and fortunate to have this group of friends whose support I can always count on, come what may. If I have a glass of champagne, I would like to toast to our bonding and friendship which have withstood the test of time.
Edited:
After I did this entry, I was reminiscing how long our friendship is. SC and I were classmates since primary school, so I knew her much longer than the rest. SK was from another sec 3 class, but we knew each other when we met in KOH's BS class. Both of us went into the honours year programme. (She being the smartest of us all, got a first class honours.) A was our sec 3 classmate but she left for England the following year. Somehow we kept in touch all these years, even now when she is living in KL. I remembered looking her up whenever I was on business trips to KL many years ago. TA went to a different jc from us but we were all reunited in NUS when we pursued the same course. We literally grew up and age together. HAHAHA
Our friendship is special. We don't always meet up with each other. Or should I say we hardly meet. It was only after Nanz migrated to the States that I organised our annual gathering upon her return. When I was first diagnosed with cancer, I was hesistant in telling them. SH convinced me otherwise as I would need all the support I could get. I only called TA and Anne and the two helped inform the rest. Since then they have been praying for me. Our friendship cultivated during our younger days (speak as though I am very old =X) needs no words or frequent meetings. We have long accepted each other's peculiarities, individualities and uniqueness. We can always pick up from where we left off.
There was a stage where I could not comprehend and accept the distances and infrequent gatherings. A enlightened me with her thoughts; we have all moved on and our circle of friends have widened too. Perhaps my chio-est zmr, MonkeyCrab said it best in her "He asked me and I replied" entry (yes, yes, I know, it's THAT FAVOURITE ENTRY OF MINE AGAIN.. heehee). So now, when I send prayer requests via sms-es, I trust and believe these sisters-in-Christ will pray for my well-being. Trust, sincerity, honesty and acceptance are some attributes of a true friendship. True friendship is what I am proud I have found in these sisters.
Diagnosed with stage 3c ovarian cancer in June 2004 and have been fighting it since. I've always said I'm a blessed patient. I'm not alone in my fight and journey, with God by my side, my terrific care-giver "Shuai(4) Ge(1)", my 3 musketeers, and a rather big group of supporters.
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