Wednesday, February 27, 2008

The latest Check Up



I did not know what to make of my last follow-up visit with my Onco. My first follow up after completing the standard surgery, chemo and radiation treatments in late October was interpreted as "okay" and that my CT Scan then required me to do another in 3/4 months time. This was due to the radiologist's report on the chest scan that read "There are 3 mediastinal nodes , measuring 11mm in the anterior mediastinum, 17 mm in the petracheal space and 16 mm in the aortapulmonray window. Conclusion: Three mediastinal nodes. They are low in density with no enhancement and may rperesent reactive nodes rather than metastasis." I certainly hoped and prayed that these are benign. I have not started on Tamoxifen or any other estrogen-inhibitor drugs, so naturally I was quite worried and took care that I do not jeopardise my health further by making sure I balanced my lifestyle with healthy eating, proper exercise ( daily 1-hr walks and Qigong), lots of fluids (juices and plain filtered water), multivitamins and lots of doa and remaining positive that I should be able to maintain this lifestyle long term so that it becomes second nature and routine. And daily selawat doa and prayers on the sejadah, for at the end of the day, we can only usaha and the Almighty decides.....
It was with such nervous tremors that I went to my 2nd follow up. I know the question of Tamoxifen will come up again and the CT scan will have to be repeated. At RM 1200 per scan, every 3 months, it is much more than what the daily Tamoxifen will cost me annually. When my Onco asked how I am, I told him the truth ie that I feel fine. He had 5 visiting doctors in his clinic that day ( from Vietnam) and he shared with them my medical history, and as though to complete the profile, mentioned that I should have started on Tamoxifen but has not yet.
They all turned to me and asked why not, and that I should. There were 3 ladies among them and I asked if any of them has been diagnosed with BC. Of course they are all hale and healthy as
doctors should be, given all the information and knowledge they have on treatment and cures. No one has had BC. I shared with them that I have courageously endured the surgery and it's aftermath ( left arm still numb and left breast still tender, as though the scars within are still mending even though the external scars are "fine") even though I had thought the lump was too small to necesitate surgery. I was a stage 1 with no lymph nodes affected baed on the examination of the 21 lymphnodes removed from my axilla. I endured the trials and tribulations of chemotherapy and all that it entailed, and am still mending. Though hair and nails are almost back to normal (my big toe nails are still trying to outgrow the blue nails), the rash on my left foot comes and goes. I am glad to be alive but can't help feeling annoyed when the rash flares up and caused severe itching which drives me crazy. I met some BC survivors who have the same problem ( some worse than me - both feet and their soles too). I mentioned that to the doctors. I am okay with that remaining side effect, as I had opted for the chemo earlier to make sure that any stray or escaped cells during surgery are rounded up by the FEC. Insya Allah. My body now feels prickly when I first break into a sweat whenever I exercise, but once the perspiration flows, I am okay. That is also something "new and different" that might be a result of toxins still trying to pour out of my body via my skin. Radiation was not much of an endurance while undergoing it but 2 weeks following, my skin (on the affected breast)was burnt as toast and itched so bad. Vitamin E oil helped, and apart from some parts which remained dry ( daily Vitamin E body lotion helped to moisturise it), everything seems fine. Except that I may not know at this point what other side-effects the 25 sessions of xrays could lead to, on the other parts of my body which might have been exposed to the rays. I felt that I have placed my faith and my life to God and modern science by having undergone all the last three therapies and that the "known enemy" then had been sorted out. The next phase of this "war on BC" to me, is just like any other effort that I, or anyone else, even the ones who are lucky to be healthy at this point, must be responsible and accountable for. I would like to place my health and my life in my hands and God's. If modern science had been true in it's prognosis and treatment, my zero lymph nodes meant that the BC had not spread, and even if 1 wicked cell had escaped, the chemo should have handled that throughout the 6 cycles and 18 weeks of endurance. The radiation would have scraped of any residual surrounding cells surrounding the surgery area. By definition, I should have a body wiped clean of all the problem cells existing then. What I need to do is to perservere to make sure new ones do not proliferate, and that they will leave my body alone, or better still leave for good. I pray everyday for good health, and treat my body well, what more can I do to ensure my body will be so unwelcoming to potential BC cells. It is not a 2 year or 5 year process, but a life-long one and I am prepared to take that task and face the consequences.
To be fair to the good doctors who have the patient's welfare as a high priority, I was not a "good" patient that day. Degil. Very degil. My Onco says he is dissappointed that I still am not ready to start on Tamoxifen, not even for a month. He says not to wait too long before it is too late. Honestly, I have not discounted Tamoxifen. I would not think twice if any of my lymph nodes had tested positive and/or I am at a late stage (na'u zubillah!). But I wasn't. I just did not feel it right to subject my body to more drugs ( and the risk to my uterus, et al) if it is not really crucial. It is not an easy choice made by simply tossing a coin. It is a deliberate choice based on lots of personal research and talking to live cases and where one minute I think I would go for it, and then the next, I thought no I would not. I flip-flopped, yes but eventually my inner voice tells me to hold off for now. If I don't listen to my inner voice( which is also based on a lot of consultations with God during berdoa sessions), then it is like saying I do not own my body.
I need to take ownership of my body, and my health, to the best of my ability and within reason too, and live well knowing that the experts will be there should God decide so. Insya Allah.
The latest CT scan that day again showed the same mediastinal nodes, but thankfully no new ones and they are all at the same size. In fact, one had actually shrunk by 2mm. When I was reading about mediastinal nodes and why there might be tumours at the mediasternum region, one of the possible causes quoted was possibly exposure during xrays and radiation therapy. I was also in October 2007 experiencing an extended bout of colds and chest infection, and that could also be a reason. In any case, it was not something that I had wished to see on my report but since it is there, the information is helpful so that I can be on the lookout for any chest discomforts or problems that could arise.
For now, I am thankful that my Onco did not press me further, and I hope he respects my desire to manage my health on a more holistic level. He did not seem interested to know about the rash on my left foot, which is fine by me even though I told him that while waiting for my turn I met 2 other ladies who had similar ( and worse problems) with their rash. I shared with him that I am not into alternative therapies, if that is what he is concerned about. I consider myself a follower of conventional (allopathic) medicine where it matters, and would complement that with a healthy approach to living which I should not pause for even a minute. I have faith in the approach I had taken with the team of doctors, and I now have faith in the lifestyle I am keeping for a more wholesome approach - a healthy living full of gratitude to the Almighty for the simple pleasures that life can bring, with a much lesser focus on material wellbeing ( it has never been that important to me but I admit I was surrounded by such people earlier and I am managing that now so that they bear less of me).
While family and friendships are managed more wisely now so that I have more of my own "me" time, my health and spiritual commitment take priority. I start the day being grateful to Allah for all his blessings to me and family and spend quiet early moments on the sejadah, thankful to be alive. Yes, there are twitches and pains in the body which beg to be noticed, but I got used to them. Besides, show me a 50 something who doesn't have an ache in their body and I will show you a golden liar! After subuh ( done at leisure and not rushed through like those days of yore!), it will be me and my carafe of filtered water - 4 glasses, before I even greet my babies! I have been practicing this since treatment time. It is much easier now compared to those days when even plain water tasted yucky and metallic.
Then a good 45 minutes of pottering about the house and bond with my babies - Troy might be in his basket, Ashley atop a shelf or cupboard- she likes the view from the top, and Putri might be on my cosy armchair in front of the TV. Bouncer and Blackie sleep outside in the patio,so they would be pawing on the glassdoor asking to be let in. By this time I would be ready to have a light breakfast of warm water, then juice or jamu (kunyit assam with a dash of lime, either freshly made or 2day old boiled version) and wholewheat slices with Marmite for taste ( a bit salty but rich with Vitamins B) and a plateful of fruits-of-the-day. Centrum multivitmins follow. I do not put salt in my cooking if I have Marmite for breakfast. Marmite is soul food for me, reminds me of early childhood when my Mum had to coax us to take it. I took Marmite during my England student days, only to relieve the homesickness I felt every now and then. It has now become an acquired taste.
About an hour after breakfast, I walk to the nearby Park-cum-Playground to practice my Guolin Qigong walk. That takes an hour , inclusive of closing-rest session. Qigong must not be practised on an empty stomach and has to be at least 30 minutes after a light meal or 2 hours after a heavy one. By the time I get home, I will be ready to face the day, after a good shower to rinse off the sweat that would have pricked my skin and poured out in rivulets. My hair would be wet after the exercise as though I had just been in the rain. I would feel really good. It could be the health benefit of the exercise which is supposed to open up all the "chi" pathways and clear all blockages so that blood could circulate more pronouncedly, and so will internal energy that is so essential for strength and immunity. I imagine that my Qigong buddies must feel really exceptionally good as they have been practising this for the last 12, 10, 9, 8, 6, 5 etc years! I have just started and already I can feel the difference. Maybe it is psychological, and if so, so be it. After all, isn't the mind and body part of our existence so why shouldn't they complement and supplement one or the other?
I do some work after my shower and will plan a healthful lunch-again within the parameters of what I should be eating that will be good for my recovery. Lots of wholefoods ( wholewheat capati, brown rice, wholewheat bihun or pasta), lots of green and colourful vegetables and ulam2, lots of lentil and dhall dishes. I go easy on fish and meat as I get my proteins from the lentils. Look at the cows and elephants who are vegetarians, they are doing fine. So are my Indian friends who are vegetarians - at most they take eggs and ghee, and they glow with health! Dinner is the same. I do not let up on this and can be very strict on myself . Just the thought of another needle prick to feed FEC into my collapsed veins and the ensuing nausea is enough to make me take just a teeny weeny spoonful of a sinful tiramisu or any dairy-laden dessert.
For treats, I make my own wholewheat scones with cranberries, pengat pisang or nangka with low sugar and low-cholestrol santan and will try different fruits daily for balance, as well as not to be too reliant on any one type of fruit or food. Too much of anything, even a good thing can be bad or toxic for us. I have been experiementing on different types of "survivor" recipes, which is a lot of fun by the way, and have in the process discovered a lot of healthy recipes from others as well. Who says eating for health is boring....it is just a small departure from that menu of sambal tempoyak and belacan , with side dishes of ikan kering goreng and daging salai masak lemak with rendang itek, and.....someone stop me! In any case, that small departure opens up an opportunity to leap up really high to a different level of living, more naturally and healthily.
I seldom eat out these days, and if I do it is probably at an Indian restaurant as there is alway Capati and vegetarian dishes to fall back on. And for days that I am fasting (Mondays and Thursdays), I go for walks just before iftar (buka) so that even if I get dehydrated, I could very soon replenish my fluid loss at buka puasa time.
In between I try to remain positive, see the lighter side of things and warn my close friends that I will really hit them hard if they come to me whining about things without seeing both sides of the coin. I am not perfect and I am not 100% healthy but as much as I can, I will try to be good to myself and my body, even if it is 0.000001% good that I can do daily, it will still add up and be better than not doing anything at all.
Insya Allah, I hope the next follow up visit will be painless as well and that my doctors will be able to see things from my point of view. I may not be a doctor, but I am the (temporary ) owner of this body which God had loaned to me, and yes, I do want to take very good care of it, just as much as they would like me to. Next month, Insya Allah, I am due for my annual mammogram ( doctor says I can do it in May together with the next follow up) and I pray that will be good news . The affected breast is still too tender to subject it to the procedure. It itches sometimes but it is an internal itch so it could be the old surgical scar within still mending as recovery was halted during the radiotherapy. I read somewhere that a herb called "Pecah Beling" has been researched and that it may be good for cancers, including breast cancer. Apparently this herb is commonly found in belukars and roadsides and can be mashed up for external applications, and can even be drank as a tea. The question I have is, if it so good and has been researched, how come no one is farming it commercially as they do for the other herbs (misai kucing, etc).
Hmmm...need to find out more. If it is really true, the roads in my housing area is lined with small belukars which are home to an abundant growth of what looks kike Pecah Beling or Bayam Karang. I wonder if it can be taken as Ulam or added to Nasi Kerabu, survivor style?

6 comments:

Anonymous said...

If I were you I would definitely start earlier on the tamoxifen treatment. Look at it logically just assuming under worst scenario conditions the stage one still persist and knowing the nature of cancer, time is of essential consideration . Being early means that the potential problem will be easier to handle and the treatment will show higher percentage of success. Delaying the treatment might mean time for the cancer cells to establish and more difficulty in treatment and reduce efficiency of treatment.
Try to look at the problem or situation objectively. I am not an oncologist but looking at the problem scientifically and logically I must say I agree with the opinions of the oncologists. Try to think what is to be gained by early treatment withe tamox? You need to have a paradigm shift... I am not asking you to lose faith in god or reject alternative medicines and therapies.I know you are intelligent, degil and strong opinionated but at times its better to listen to experts such as the oncologists. We cannot live in a state of denial forever,or in the safety comfort of what we believe that everything will be right. Its your well being and your health which are of concern not only to you but to those that love and care for you. Try listening to the oncologists :))

Azmi said...

Dear Anon,
I am very touched over your concern and thank you loads for the time you take to visit. Let me re-assure you that denial is the last thing on my mind. I accept that once a BC patient, there is no "cure" - just being in remission, if we continue to take take great care. It is my paradigm shift to have more faith and to trust more in what my mind and body can do, God willing . I am not advocating that this is the right approach for everyone nor am I suggesting it to anyone. I would never recommend it to anyone but for me at this point in time, this is a preferred option, which has been thoroughly thought out. Am I in my "comfort zone"? Certainly not. I have to "work" harder at ensuring that I am at optimum health and maximise my immunity level.
Nevertheless, thank you very much for your concern, I am most touched, and appreciate your comment which is a good reminder for anyone else reading my blog - to "balance" where I am coming from...
Salam mesra,
Azmi

Anonymous said...

Azmi, wow rajin pula you menulis, he he he, berpinar mata lepas baca.

Pecah beling mana boleh buat ulam mek, unless you hiris halus pucuk dia.

Orang tak tanam sebab pesakit kanser ramai yang hangat2 tahi ayam. Mula amalkan, lepas tu bila rasa sihat dan sibuk, tak buat.

I dah tengok a living case of terminal breast ca patient, with bone and lung metastasis yang survived for the last four years just on pecah beling and kateh murai, plus strong faith with the herbs and the tuhan dia. Selalu gi temple, dan selalu cakap2 dengan pokok herbs dia.

Dia pun manusia, bila dah 4 tahun dan sihat benor, dia berhenti. Ah, timbul le seketul lump kat dada, proved cancer, and she started her practice again and the lump disappeared.

Dia tak strict vege pun. Tapi from her frame I think she took care of what she eat.

Azmi said...

Has,
i ni menulis ikut mood, kadang kadang mata sendiri pun berpinar lepas tengok keyboard! I minat nake find out a bit more about this lady who is taking pecah beling, does she have a blog or do you know how I can get in touch with her? I saw some plants near my hosue that looks like pecah beling but no one around here can confirm fe, bahaya juga kalau pandai2 buat teh and drink! he biook says the leaf edges are bergigi@ but the ones I saw fits the picture , description but the edges are not bergigi although daun nya kesat.
Btw, the minyak kelapa dara made via fermentation method is soooo delicious! Actually even if the santan smells foul after 3 days, the oil that terbit in between the curdles is so fine, smooth and surprisingly no smell at all. And taste good. Now I prefer VCO to VOO. VCO tastier on toasts! I might try baking using VCO if I get the urge to bake...

And what is Kateh Murai?

How was your visit to the A Gajah retreat - any good? When I go back to my kampung again, I might check it out. You must be glowing after the retreat!

HCI said...

Dear Azmi,

I tak gi lagi A Gajah sebab my hubby want to go slow first. May be we go after the school holiday. Dia nak amalkan herbs dari Prof Chris Teo Penag Ca care, tapi after one month I found that my hubby tak ngam sangat dengan herbs tu. Probably the herbs clensed him too much until he is real drained of his energy.

Now, I let him on transfer factor and me too trying the transfer factor. I can feel the difference, and ada masa I cerita kat blog.

Lilly don't mind orang talipon dia. Bila I jumpa dia I sedekah kan duit kat dia, sebab dia tak ada kerja. Dia berjanji dengan Tuhan dia dulu, kalau dia sembuh dia akan tolong ramai pesakit kanser dengan herbs yang dia makan tu. Dia tu memang ikhlas, susah nak cari patients Malayu yang ikhlas macam dia.

Ni number talipon Lilly: 016-4553821.

Azmi said...

Dear Has,
thank you for Lilly's contact info. I will call her tonight.
Selalu kalau ambil herbs or any medication yang supposed to be cleansing, esti ada "healing crisis". Maybe your hubby went through a "healing crisis" tak?
I will do to tag on a picture of the tumbuh2an near my house which might be Pecah Beling, maybe you can take a peek and see if it is the same plant. Thanks..