June 19 (Day 6 of Cycle 4)
I had made an appointment to meet with a Financial Cnsultant to see what he has for me. I usually look forward to such cerebral discussions and keeping up to date with how others are managing their finances, if only to re-assure that I am not too conservative.
However, after my morning walk to get the morning papers, I felt all bloated up and I did not feel better even after my shower. I decided to play it safe and called him up to re-schedule and instead ended up resecheduling it to later in the afternoon at home. So, at least I felt it was a somewhat productive day and not one that just passed me by. Too many days have passed me by with nothing much to account for it, except that I am thankful that such "idle" days would normally be a luxury in the normal scheme of things.
I have used up all the post-chemo medication that the doctor gave me-the Emend, Ducolax and Dexamethasone. With no medication to prompt my system to feel "better", I felt yet again robbed of energy, taste buds and enthusiasm. Again the thought of food made me queasy and I dreaded the moments when Vik my helper came up with the twice daily inevitable question..."Buuk.....nak masak apa, Buuk?"
I had degenerated from someone full of ideas on days 1 through 5 and now, whenever she asked me, I would make a face and point to my tummy and tell her "Awak masak lah apa yang awak nak makan....buatkan saya IndoMie dan rebus sawi banyak-banyak." I would then try to force down a bottle of Brand's essence of chicken or Haruan essence for my proteins.
Aaagh...I know there is a reason for this. Maybe it is to see how my helper can cope without specific instructions. So far, she has been quite creative except that her creativity almost always include some "cabei'k which I couldn't help but touch and then paid for it by having burping fits in the night, which needed to be pacified with half a mug of warm horlicks. No more "cabeik".
I have put on yet another kg at the pre-chemo weighing in session and I couldn't really understand why. I have small helpings at meals, just a scoop of rice and plenty of vegetables and fruits and I no longer indulge in cakes and pastries, so why the weight gain? Granted, I am not up and about as before and spent half the time between chemos being plastered on my sofa either reading or on the phone or doing absolutely nothing sometimes, but I do keep active during periods of high energy.
I was at the Yoga center yesterday making inquiries about targetted therapy ie asking if they could tailor some exercises for me given my stiff and swollen arms. I was told that they actually have a doctor who could advise on this, and I was provided some reading materials to browse before my session. I have not heard from my friend who was going to organise early morning yoga at her place. She had indicated that if we have at least 5 persons, we could arrange for a Yoga teacher to conduct the session in her nice garden. I hope she is okay...she must be as I heard her cookie business is doing well!
June 20 (Day 7 of Cycle 4)
I felt bored to the teeth. My morning walk was uneventful as I found that I wasn't able to think happy and nice thoughts during the walk, no matter how hard I tried. Was it the sight of elderly people being taken for walks on wheelchairs or walkers alongside their maids? It made me think of old age and how lonely that time of life can be and how sad that people have to pay people to care for them even when they have their own kin...I think of my father.
How soon will I get better and feel "normal" again? And when I do, will be be close to my "normal" self or will I change. This trial that God has assigned to me, what will it bring at the end of it all? Should I fry my brains to work out the possibilities and stand to be disappointed if none of them turn out the way I would desire them? Or should I just relax, and go with the flow and be thankful of whatever outcome knowing that whatever it is going to be, it is part of His plan?
At times I feel that I am tempting fate by defining Plans A and B, knowing pretty well and accepting pretty well that we can only plan but the actual realisation of the so-called plans is very much in the hands of the Almighty. So, it is back to living for the day especially during rollercoaster moody days like this. My nephew and nieces from Shah Alam had called to say they wanted to come visit today. But because I am feeling so yucky, I had to be really honest and told them that I am not up for guests today because I don't want them to feel down by being with me. They have not seen me since chemo and I do not like that what they will see is not going to be the "normal" aunty that they know. I am not up to dragging them down to the low moods I am feeling. They sound disappointed when I told them but I sure hope they understand.
Tomorrow, I am seeking an opinion on why my wrist remains swollen since a day after chemo. It is not hurting but I am not able to see my veins as my palm, wrist and forearms appear bloated (water-retention?) and really looks like a huge baby's hand. I hope there is a comforting explanation and that I will not be given more medication. I am just tired of taking in this and that as it seems that there is no end to what my body needs to make it feel settled.
This is again another dilemma for patients managing side-effects of chemotherapy. Side-effects mean the drugs are really hitting hard and therefore "working" but one must be strong to manage the side-effects. If one is not, then fret not, there are more drugs to lessen the side-effects but in turn, these have their own side-effects. So the chain never ends and we end up going around in circles. It makes me wonder if God meant for us to actually grin and bear the side-effects without the secondary drugs in the first place. After all, that is what being "strong" and having faith is all about, and not to "give up" by resorting to various "aids"?
I am actually too tired to reason this out for now....and I just need a good proper rest....which is very different from just being plastered onto the sofa. I really dislike being in this mood....must get out of it soon. I drove out to the nearby Shopping Center to the bookshop and how strange that the books didn't inspire me as usual! Instead I went to the Supermarket downstairs and got some stuff which appeared appetising but which I now look at with qualms, even after my poor helper had turned them into something she considers to be "enak".
Azmi...., get out of this soon, girl! Maybe I feel better after the booster this Friday, Insya Allah.
Wednesday, June 20, 2007
Monday, June 18, 2007
Days 3, 4 and 5 of Cycle 4 - zonked!
June 18 (Day 5 of Cycle 4)
I am feeling rather sloppy for not keeping up with the daily blog entry but I have been conscientous about updating the medical journal on a daily basis. Reasons for the sloppiness is an inability to sit up for a an extended period at my desk and also the awkward feeling in my rather swollen wrist (right) over the weekend. If the swelling does not subside after gentle massage with medicated oil, it will definitely warrant another call or visit to the doctors. My palm and fingers look cute and chubby, just like a plump baby's, except that plump babies don't feel a tightness or stiffness in their fingers. The stiffness made it a bit difficult to type without being conscious of the nagging swelling. I am unable to fit my wrist watch ( which normally rolls around my wrist) onto my right wrist.
I spent the entire day just resting, flat out on the sofa after my brother Ijan and friend RJ left for Melaka. Ijab was here to join the garage sale with a small collection of dvds that he no longer wanted to keep. Reading was out of the question as the words swim before my eyes and my guts started to well up if I sit up. So, another bout of Cleopatra posting to ease the queasy feeling. I couldn't really eat lunch, Sup Tulang, Choy Sam masak lemak and Ikan Goreng with onions and tomatoes so I got Vik to fry some ikan sepat to work up an appetite. It worked some.
I must have exerted myself unnecessarily on both Saturday and Sunday moving about instead of staying put.
Saturday June 16 (Day 3 of Cycle 4)
I was really gung-ho early in the morning after solat. I got Vik to pull out all the boxes from the store and I peeked inside to decide if the boxes should go to the porch for the garage sale. I have a lot of "competition" this time, as just down my road, 8 families pooled together to have their sale in one house so they had tons of stuff to offer.
2 of my friends joined my venue. It was fun to see the stuff clearing away and to realise that we have been keeping these items hoarded when others can really made use of them. I cleared designer sports bags, handbags and sports equipment (Tennis/Squash rackets) and loads of work clothes. Suits at RM10 (!!!) and tops at RM1-5 ! We also gave away some clothes free if someone buys a lot. I am left with a rack of clothes which which will be given away soon, perhaps to RSPCA. There were some old framed prints ( some originals) sold at RM 1 to little girls who were looking for Father's day gifts for their daddies.
I was totally exhausted by the time we were through about noon. Thank God Vik is around to help with sorting out the aftermath. My friends came by later to check out what's left. The heavens poured and I had some hungry friends trapped in the house. As it was a Saturday and I normally do grocery shopping on Sundays, we were lucky that Vik was able to put together a lil of this and a lil of that to come up with a simple but delicious bihun goreng. We ate ravenously, even me!
Sunday June 17 (Day 4 of Cycle 4)
It is Father's Day and I felt a bit sad that I was not able to visit and spend some time with my Dad at the home. The plan was to make a day trip with SNA but at the last minute something happened and she was unable to drive me there. I am one who is rather poor at dealing with last minute changes like this especially when I was looking forward to it but I had learnt to manage my expectations once I know that my plans are not my own anymore once I am hinged to assistance from others. I consoled myself by saying that once I get my booster shot done, we could make the trip another day and this time perhaps stay longer.
Sunday as usual is newspaper reading day, and I can't help feeling just slightly miserable reading about the various Father's Day celebrations undertaken by others with their fathers. I was not in the mood to call up any of my siblings to find out what their plans were as something tells me that what I hear may not help to make me feel any better.
Spent the evening at home with Ijan and my friend UZUN who dropped by about tea-time on her way to her hairdresser. The it was a night out at Bangsar for dinner as Ijan loves the food at Nirvana. I had the fried fish and went easy on the curry in case my tummy plays up again like the last time. ZZN and her daughter joined us at Nirvana and tired as I was, it felt good to be walking around in the cool night air buying some supplies for the week.
Someone mentioned that fish with scales are good to eat ( although I wasn't sure if we have to remove the scales or crisp-fry them so the scales can be ingested) for cancer. I must admit it is the first time I hear of this, but fish is not a drug and it is a protein, so I wouldn't mind giving it a try. We saw some fish at the night market that looked like the RM4 per piece ikan bulus goreng at Nirvana ( complete with fine scales) and we bought a tray at RM 10. After she cleaned the fish, Vik said she counted 31 pieces of fish, all for the price of RM 10 when just a while earlier 5 of us had a banana leaf meal for RM 50 with a drink, a fried fish each and a mutton curry for sharing!
I was totally zonked out by the time we got home and prayed for my dad that he wasn't too depressed or disappointed that no one went to see him today. I consoled myself that I had always tried my best to see him, Father's Day or not, so I shouldn't feel too guilty. But it is difficult not to.
I am feeling rather sloppy for not keeping up with the daily blog entry but I have been conscientous about updating the medical journal on a daily basis. Reasons for the sloppiness is an inability to sit up for a an extended period at my desk and also the awkward feeling in my rather swollen wrist (right) over the weekend. If the swelling does not subside after gentle massage with medicated oil, it will definitely warrant another call or visit to the doctors. My palm and fingers look cute and chubby, just like a plump baby's, except that plump babies don't feel a tightness or stiffness in their fingers. The stiffness made it a bit difficult to type without being conscious of the nagging swelling. I am unable to fit my wrist watch ( which normally rolls around my wrist) onto my right wrist.
I spent the entire day just resting, flat out on the sofa after my brother Ijan and friend RJ left for Melaka. Ijab was here to join the garage sale with a small collection of dvds that he no longer wanted to keep. Reading was out of the question as the words swim before my eyes and my guts started to well up if I sit up. So, another bout of Cleopatra posting to ease the queasy feeling. I couldn't really eat lunch, Sup Tulang, Choy Sam masak lemak and Ikan Goreng with onions and tomatoes so I got Vik to fry some ikan sepat to work up an appetite. It worked some.
I must have exerted myself unnecessarily on both Saturday and Sunday moving about instead of staying put.
Saturday June 16 (Day 3 of Cycle 4)
I was really gung-ho early in the morning after solat. I got Vik to pull out all the boxes from the store and I peeked inside to decide if the boxes should go to the porch for the garage sale. I have a lot of "competition" this time, as just down my road, 8 families pooled together to have their sale in one house so they had tons of stuff to offer.
2 of my friends joined my venue. It was fun to see the stuff clearing away and to realise that we have been keeping these items hoarded when others can really made use of them. I cleared designer sports bags, handbags and sports equipment (Tennis/Squash rackets) and loads of work clothes. Suits at RM10 (!!!) and tops at RM1-5 ! We also gave away some clothes free if someone buys a lot. I am left with a rack of clothes which which will be given away soon, perhaps to RSPCA. There were some old framed prints ( some originals) sold at RM 1 to little girls who were looking for Father's day gifts for their daddies.
I was totally exhausted by the time we were through about noon. Thank God Vik is around to help with sorting out the aftermath. My friends came by later to check out what's left. The heavens poured and I had some hungry friends trapped in the house. As it was a Saturday and I normally do grocery shopping on Sundays, we were lucky that Vik was able to put together a lil of this and a lil of that to come up with a simple but delicious bihun goreng. We ate ravenously, even me!
Sunday June 17 (Day 4 of Cycle 4)
It is Father's Day and I felt a bit sad that I was not able to visit and spend some time with my Dad at the home. The plan was to make a day trip with SNA but at the last minute something happened and she was unable to drive me there. I am one who is rather poor at dealing with last minute changes like this especially when I was looking forward to it but I had learnt to manage my expectations once I know that my plans are not my own anymore once I am hinged to assistance from others. I consoled myself by saying that once I get my booster shot done, we could make the trip another day and this time perhaps stay longer.
Sunday as usual is newspaper reading day, and I can't help feeling just slightly miserable reading about the various Father's Day celebrations undertaken by others with their fathers. I was not in the mood to call up any of my siblings to find out what their plans were as something tells me that what I hear may not help to make me feel any better.
Spent the evening at home with Ijan and my friend UZUN who dropped by about tea-time on her way to her hairdresser. The it was a night out at Bangsar for dinner as Ijan loves the food at Nirvana. I had the fried fish and went easy on the curry in case my tummy plays up again like the last time. ZZN and her daughter joined us at Nirvana and tired as I was, it felt good to be walking around in the cool night air buying some supplies for the week.
Someone mentioned that fish with scales are good to eat ( although I wasn't sure if we have to remove the scales or crisp-fry them so the scales can be ingested) for cancer. I must admit it is the first time I hear of this, but fish is not a drug and it is a protein, so I wouldn't mind giving it a try. We saw some fish at the night market that looked like the RM4 per piece ikan bulus goreng at Nirvana ( complete with fine scales) and we bought a tray at RM 10. After she cleaned the fish, Vik said she counted 31 pieces of fish, all for the price of RM 10 when just a while earlier 5 of us had a banana leaf meal for RM 50 with a drink, a fried fish each and a mutton curry for sharing!
I was totally zonked out by the time we got home and prayed for my dad that he wasn't too depressed or disappointed that no one went to see him today. I consoled myself that I had always tried my best to see him, Father's Day or not, so I shouldn't feel too guilty. But it is difficult not to.
Friday, June 15, 2007
Day 2 Cycle 4 - So, so lah
Ashley's and Li Po's tete-a-tete:
Li Po: "Kak Ashley, heard Mama Mi is going for another Garage sale...what's with her, just 2 days after her 4th Chemo....where is she going to get the energy, she was normally plastered flat on her sofa dring the 5 early days..."
Ashley: "Don't worry lah Li Po...Mama Mi is an old ( if a little swollen) hand in this....she has some help to punggah all her barang, she just bark out the orders...If I know her well enough, she will only do this if she is certain she can cope....."
Li Po:" I know that...like the last time when she brought all 5 of us - Me, Tompok, Ms Gigit, Wati and Devi to be spayed so that she can get a good discount from the Vet! And the effort it took to manage us all until she packed us back to Kampung...she managed us beautifully even though all her friends were shaking their heads at how she can mange 5 cats in her KL link house..."
Ashley: "I trust her judgement...and I am sure she will wear a surgical mask or something at the first sign of a couging or hawking caller....or send Vik to deal with them and she remains behind the glass sliding door....don't worry, she'll manage....Insya Allah...she just wants to join the event as it was rather fun the last time..."
...end....
Li Po: "Kak Ashley, heard Mama Mi is going for another Garage sale...what's with her, just 2 days after her 4th Chemo....where is she going to get the energy, she was normally plastered flat on her sofa dring the 5 early days..."Ashley: "Don't worry lah Li Po...Mama Mi is an old ( if a little swollen) hand in this....she has some help to punggah all her barang, she just bark out the orders...If I know her well enough, she will only do this if she is certain she can cope....."
Li Po:" I know that...like the last time when she brought all 5 of us - Me, Tompok, Ms Gigit, Wati and Devi to be spayed so that she can get a good discount from the Vet! And the effort it took to manage us all until she packed us back to Kampung...she managed us beautifully even though all her friends were shaking their heads at how she can mange 5 cats in her KL link house..."
Ashley: "I trust her judgement...and I am sure she will wear a surgical mask or something at the first sign of a couging or hawking caller....or send Vik to deal with them and she remains behind the glass sliding door....don't worry, she'll manage....Insya Allah...she just wants to join the event as it was rather fun the last time..."
...end....
June 15 (Day 2 of Cycle 4)
I felt so-so, not too tired and took all medications as prescribed plus some Cod Liver Oil as I am beginning to have a phlegmy cough. The nausea persisted but not too acute and was manageable that I felt inclined to go to KLCC to run some errands at the bank and check out the mega sales. It took an hour to get to KLCC, I am sure glad I wasn't driving and it was the same on the way back. I would have passed out due to boredom and fatigue if I had been driving.
Lunch of beef teppanyaki at the food court ( I miss the foodcourt and cafes there from my working days) was nutritious but my tastebuds tasted absolutely nothing, just crunch, crunch, munch,munch and swallow for the goodness it will bring. I miss going for coffee and pastries nearby. Bumped into a couple of ex-colleagues who said they were guilty for not looking me up after they heard the news but they were "serba-salah" and did not know what to say. I think I understand what they went through as I have gone through the same before when I heard of people whom I know were jovial,. healthy and happy and felt awkward they should be in their situation but god had willed it that I was at a loss on what to say or offer, sometimes. Only when the person is really close to me will I be able to say something meaningful, I felt.
I spent the whole afternoon (got back by 3 pm) NAPPING. I really slept quite soundly with Blackie on the foor beside me, catnapping and sprawled without a care to the world after a meal of ikan goreng and rice. I woke up about 5 pm, so that was 2 solid hours of sleep, hope it will not affect my night sleep tonight. I usually don't nap in the afternoons during chemo, just felt restless and listless but unable to drift off but, today I really drifted.
I felt quite energised after the nap and had a tea of green tea (chilled) and strawberries and oats. Then I was ready to attack more spring cleaning with Vik as my sidekick. She is tough and full of energy so she helped with moving around the heavy stuff and I did the selection of keep, recycle and dispose.
I don't know what got into me but I am participating in the community garage sale again this weekend organised Jalin Realtors for our neighbourhood. My friends, brother and nephews will be joining me and it will be fun. If I faint, Vik will pretend to be me and manage my part of the garage sale. I have lots of work clothes to recycle and offer at really charity prices plus knick-knacks that I have outgrown but I am sure will bring pleasure to others, especially if I let them go at 1/100th of what I had paid for them, some acquired overseas from trips during my wanderlust days.
My target is again to clear what I will put out, and if not picked by callers (the last time they came as early as 7.30 am, those early bird bargain hunters) I will send them to the RSPCS thrift shop so they can sell and use the proceeds to help maintain the animals in their shelter.
Insya Allah, my "day-in" will be a successful spring cleaning and sharing of things that can be of use to/by others....
Thursday, June 14, 2007
It's D-Day for Cycle 4 of Chemo
June 14 (Day 1 of Cycle 4 of Chemotherapy)
It's starting again, the fresh after chemo side-effects of nausea, fatigue and loss of appetite. So this account will be sketchy at best but hopefully will include all the pertinent details of the day.
8.30: Took a cab with Vic carrying my overnighter and laptop (just in case) to reach the medical center before 9.
9.00:Did my pre-chemo FBC. Had to wait 45 mins for results. Read papers.
10.00: Pre-chemo review with Onco. The blood test results were out and I could proceed with chemo. And surprise and SyukurAlhamdullillah, the wbc was excellent, the best so far, in fact it exceeded what it used to read before chemo. It was 8.7, a high jump from 1.8 before Neupogen. The diet of daily beef stock and red meat and kacang botol, midin must have helped. I was grinning despite my sore bottom.
My Onco was told the gory details of my bouts with constipation, and resulting sore bottom. He prescribed 7 days of Ducolac this time. He recommended increasing my Epirubicin dosage (the red drug) by 10-15% to 125mg, he says to increase its efficiency to bump off any mutant cells and also to try push me to my limit so that my wbc reads 1.0 on day 9 (one day earlier than usual interim blood tests). Wot??? I asked him on the rationale of hammering my wbc, and he told me not to worry as it will recover with the Neupogen to be given, maybe more shots if really required. The idea is to be more aggressive with Epirubicin.
On the surface of it all, I appeared concerned why it is necessary. But secretly I am quite supportive as my sometimes sore and bleeding bum is causing me concern. Especially since Breast Cancer and Colorectal Cancers are sometimes partners in crime. This I gathered reading some reports either in the internet or even some of the newspaper reports that are displayed in Oncologist's waiting rooms in most of the medical centers I had visited. My take is that if the constipation is unattended, leading to eventual hard poo, it may strain that last bit of the digestive canal. I felt really uncomfortable discussing this with my Onco other than mention it in passing and therefore forgot to ask for a prescription for a balm that might heal any cut tissues. Hardly a subject to discuss with a straight face. I will call him tomorrow and seek his tele-opinion.
We discussed my collapsed vein and I told him, Dr A his standing-in MO prescribed some steroid cream for the thrombophlebitis. He corrected me saying that Dr A is a specialist, one of his best post-grad doctors! Anyway, I told him that after a few days of steroid, there wasn't any improvement in the pain and tightness and I had resorted to massage gently with minyak panas (nutmeg and gamat oil) which helped relieve the pain but the venins are still lumpy and hard. For the chemo, he will prescribe a dose of cimefidine (or something that sounds like it as a I couldn't identify the item fin the billing)which will help to dilate the collapsed veins. They need to re-use the first chemo vein as no other veins look good enough. I asked him where will the clots go (to my head/lung/heart?) and he reassured me there wasn't any clots, only inflammation which felt like lumps under the skin.
10.30: Off to Chemo Daycare and was given Day 1 (of 3) oral prescription of Emend. Must wait for an hour before chemo can start. The Onco nurse started to fix the gadget on my vein (sakit this time) and started a drip of saline.
11.00: Shot of Kytril given, and more waiting. I think the shot of Dexa was also given, this time I got the prickly sensation even under the skin of my tummy, not just at my bottom extremities.
11.30:Start of chemo. First shot was the Cimefidine to dilate the veins. Boy, was that painful as I could feel the frug coursing through my vein and the inflammation in the veins must have caused some sensitivity. I was ouching and aahing throughout. The Epiribucin was next, the increased dosage means 2 fat syringes and a little one. I reminded my nurse to go slow and steady. ANd for the first time since Cycle 1, I actually felt pain when the drugs are being shot (bolus method , she said). Sakit, real sakit. Reminded me of the comments on people who refused chemo because chemo is painful. All along from Cycle 1-3, the chemo injections were never painful except for the initial needle prick to install the gadget, but for cycle 4 it was painful due to the dilation of once collapsed veins. During the procedre I was supposed to suck a cup of ice, but one look and my stomach lurched, and after 1 cube, I was ready to throw up but managed to control. Very nice of the nurses to get me a lime flavoured ice-lolly to suck in lieu of ice to help with damage control in my mouth as the lining is so thin and the drugs can cause havoc with taste buds ( which are already extinct by now in my mouth. I taste food but a different taste from what others do).
11.30-2 pm: Continuation of drug injection, a painful process throughout. The cytoxan was administered via drip, and it was painful too.
2.00-3pm: An hour of saline infusion to flush the veins after chemo, and after that I was free to go rest in the ward.
3.00-3.30: Late lunch at cafe before resting as I had missed the lunch rounds in the ward. Vik ate heartily, she must be bored and hungry sitting there waiting, and waiting. I couldn't cope with much, just some items of yong tau foo and I realised that my taste buds have gone crazier. Everything tasted bitter and awful, except for food with a tang (masam-masam) but I need to watch that to avoid recurrence of gastritis and acid reflux in the stomach.
3.30-9 pm: Rested in medical center. The nurse checked my vitals and said I could discharge as I agreed with my Onco that I can go home once I feel stable. All vitals ok except she was puzzled why my bp was low at 88/55. I decided to
move out of the ward about 8.30 as a new patient was admitted in my room with a chronic cough that sound so frightening, hawking and she had to pit phlegm into a bag. I felt so sorry for her and yet at the same time realised that I cannot and should not be in the same room with her as her coughs and sputums would release millions of virus and bacteria that will not be good for my condition. I asked her about her ailment, she said she is 30 yrs old and have been suffering of a chronic cough for years and now felt weakened by it and the doctors needed to examine and investigate her lungs. I explained to her I was supposed to be out by 7.30 and they must have thought the room is vacant, that is why she was admitted there. Personally I felt that she would be better off in a single room. I wished her all the best and hope it is nothing serious like TB or lung cancer and explained to her I have to go and wait for my friend in the lobby.
9.30: My friend picked us up and gave Vik and I a ride home. Very nice for someone to swing by all the way from B.Utama to do that.
10.00pm: Unwind at home with a glass of warm horlicks and oats before retiring for the night. Mentally I am determined not to vegetate during the first 5 days,if only to feel a sense of personal triumph. Already planning to surprise my Dad with a visit on Father's Day if someone can drive me there, I will not be able to drive long distance during the first 5 days. My friend SNA had indicated she will consider it and we could go to that nice Ikan Bakar place for lunch!
It's starting again, the fresh after chemo side-effects of nausea, fatigue and loss of appetite. So this account will be sketchy at best but hopefully will include all the pertinent details of the day.
8.30: Took a cab with Vic carrying my overnighter and laptop (just in case) to reach the medical center before 9.
9.00:Did my pre-chemo FBC. Had to wait 45 mins for results. Read papers.
10.00: Pre-chemo review with Onco. The blood test results were out and I could proceed with chemo. And surprise and SyukurAlhamdullillah, the wbc was excellent, the best so far, in fact it exceeded what it used to read before chemo. It was 8.7, a high jump from 1.8 before Neupogen. The diet of daily beef stock and red meat and kacang botol, midin must have helped. I was grinning despite my sore bottom.
My Onco was told the gory details of my bouts with constipation, and resulting sore bottom. He prescribed 7 days of Ducolac this time. He recommended increasing my Epirubicin dosage (the red drug) by 10-15% to 125mg, he says to increase its efficiency to bump off any mutant cells and also to try push me to my limit so that my wbc reads 1.0 on day 9 (one day earlier than usual interim blood tests). Wot??? I asked him on the rationale of hammering my wbc, and he told me not to worry as it will recover with the Neupogen to be given, maybe more shots if really required. The idea is to be more aggressive with Epirubicin.
On the surface of it all, I appeared concerned why it is necessary. But secretly I am quite supportive as my sometimes sore and bleeding bum is causing me concern. Especially since Breast Cancer and Colorectal Cancers are sometimes partners in crime. This I gathered reading some reports either in the internet or even some of the newspaper reports that are displayed in Oncologist's waiting rooms in most of the medical centers I had visited. My take is that if the constipation is unattended, leading to eventual hard poo, it may strain that last bit of the digestive canal. I felt really uncomfortable discussing this with my Onco other than mention it in passing and therefore forgot to ask for a prescription for a balm that might heal any cut tissues. Hardly a subject to discuss with a straight face. I will call him tomorrow and seek his tele-opinion.
We discussed my collapsed vein and I told him, Dr A his standing-in MO prescribed some steroid cream for the thrombophlebitis. He corrected me saying that Dr A is a specialist, one of his best post-grad doctors! Anyway, I told him that after a few days of steroid, there wasn't any improvement in the pain and tightness and I had resorted to massage gently with minyak panas (nutmeg and gamat oil) which helped relieve the pain but the venins are still lumpy and hard. For the chemo, he will prescribe a dose of cimefidine (or something that sounds like it as a I couldn't identify the item fin the billing)which will help to dilate the collapsed veins. They need to re-use the first chemo vein as no other veins look good enough. I asked him where will the clots go (to my head/lung/heart?) and he reassured me there wasn't any clots, only inflammation which felt like lumps under the skin.
10.30: Off to Chemo Daycare and was given Day 1 (of 3) oral prescription of Emend. Must wait for an hour before chemo can start. The Onco nurse started to fix the gadget on my vein (sakit this time) and started a drip of saline.
11.00: Shot of Kytril given, and more waiting. I think the shot of Dexa was also given, this time I got the prickly sensation even under the skin of my tummy, not just at my bottom extremities.
11.30:Start of chemo. First shot was the Cimefidine to dilate the veins. Boy, was that painful as I could feel the frug coursing through my vein and the inflammation in the veins must have caused some sensitivity. I was ouching and aahing throughout. The Epiribucin was next, the increased dosage means 2 fat syringes and a little one. I reminded my nurse to go slow and steady. ANd for the first time since Cycle 1, I actually felt pain when the drugs are being shot (bolus method , she said). Sakit, real sakit. Reminded me of the comments on people who refused chemo because chemo is painful. All along from Cycle 1-3, the chemo injections were never painful except for the initial needle prick to install the gadget, but for cycle 4 it was painful due to the dilation of once collapsed veins. During the procedre I was supposed to suck a cup of ice, but one look and my stomach lurched, and after 1 cube, I was ready to throw up but managed to control. Very nice of the nurses to get me a lime flavoured ice-lolly to suck in lieu of ice to help with damage control in my mouth as the lining is so thin and the drugs can cause havoc with taste buds ( which are already extinct by now in my mouth. I taste food but a different taste from what others do).
11.30-2 pm: Continuation of drug injection, a painful process throughout. The cytoxan was administered via drip, and it was painful too.
2.00-3pm: An hour of saline infusion to flush the veins after chemo, and after that I was free to go rest in the ward.
3.00-3.30: Late lunch at cafe before resting as I had missed the lunch rounds in the ward. Vik ate heartily, she must be bored and hungry sitting there waiting, and waiting. I couldn't cope with much, just some items of yong tau foo and I realised that my taste buds have gone crazier. Everything tasted bitter and awful, except for food with a tang (masam-masam) but I need to watch that to avoid recurrence of gastritis and acid reflux in the stomach.
3.30-9 pm: Rested in medical center. The nurse checked my vitals and said I could discharge as I agreed with my Onco that I can go home once I feel stable. All vitals ok except she was puzzled why my bp was low at 88/55. I decided to
move out of the ward about 8.30 as a new patient was admitted in my room with a chronic cough that sound so frightening, hawking and she had to pit phlegm into a bag. I felt so sorry for her and yet at the same time realised that I cannot and should not be in the same room with her as her coughs and sputums would release millions of virus and bacteria that will not be good for my condition. I asked her about her ailment, she said she is 30 yrs old and have been suffering of a chronic cough for years and now felt weakened by it and the doctors needed to examine and investigate her lungs. I explained to her I was supposed to be out by 7.30 and they must have thought the room is vacant, that is why she was admitted there. Personally I felt that she would be better off in a single room. I wished her all the best and hope it is nothing serious like TB or lung cancer and explained to her I have to go and wait for my friend in the lobby.
9.30: My friend picked us up and gave Vik and I a ride home. Very nice for someone to swing by all the way from B.Utama to do that.
10.00pm: Unwind at home with a glass of warm horlicks and oats before retiring for the night. Mentally I am determined not to vegetate during the first 5 days,if only to feel a sense of personal triumph. Already planning to surprise my Dad with a visit on Father's Day if someone can drive me there, I will not be able to drive long distance during the first 5 days. My friend SNA had indicated she will consider it and we could go to that nice Ikan Bakar place for lunch!
Wednesday, June 13, 2007
Tomorrow Is D-Day for Cycle 4!
June 13 (Day 21 od Cycle 3)
Tomorrow is D-Day for Cycle 4, which means 2 more to go, yahoo! Soon, Insya Allah, all the cycles will be over. Let's hope we can find a good vein tomorrow.
Tomorrow is D-Day for Cycle 4, which means 2 more to go, yahoo! Soon, Insya Allah, all the cycles will be over. Let's hope we can find a good vein tomorrow.
Mama Mi temporarily re-united with Putri, Boy Troy and Ashley (with head in catfood bin) while in Melaka recently.
Says Putri: "Well, Mama Mi, handle the next few cycles well, ok. Now that your helper is here, you can ship us back to KL once your treatments are over, so that we can sharpen our claws against that ooh so scratcheable, lovely sofa of yours, is it still there or have you written if off to some junkyard? Or better still, come back here and live in kampung, so you can see Atuk everyday. Also now he wants to come back and stay at home. He is very worried about you, you know......we quite like it here actually, all the birds and the bees and the other day even a snake or two, according to Acu! And the fruit season's just around the corner, with rambutans flowering and young mangoes slowly emerging...! And durians if anybody is brave enough to venture to the now quite neglected dusun, where wild boars have been spied!"
-end-
I went to the Dentist (also in the same medical center so she is aware of my chemo treatment regime) to check on the painful blisters and sores in the mouth. She spotted the location and mentioned that for now she can prescribe Gengigel to apply on the blister( about 4mm wide at the base of the tongue near my gums) and a Gengigel gargle after meals. The Gengigel prescription contains something called hyaluronic acid which helps in healing in mouth and oral tissues.
However she says I need to change my toothpaste as my gums are showing signs of receding and Sensodyne is better than Oral B to manage that so they won't get worse. All the chewing of fibrous greens, fruits and meat does have a toll on the gums. She reassured me that the prescription will not interfere or clash with the chemo regime, especially since tomorrow I will have more chemo drugs pumped into me.
I will be seeing my Onco tomorrow after the pre-chemo blood test. I hope my wbc is at least 4.0 ( it has been declining since the first cycle of 6.8, then 6.4, and the last was at 5.4). My interim chemo wbc was even worse-2.8, 2.4 and the last was at 1.8. I am taking lots of stuff to boost and hopefully the reading will not get any lower. Tonight, dinner is pasta with bolognese sauce, teaching my helper to cook something "foreign". Hopefully the lean ground beef sauce, and the dates I have been munching all day will translate to a good blood count tomorrow.
Tuesday, June 12, 2007
Two Days before Cycle 4!
June 12 (Day 20 of Cycle 3)
How Time flies....it will soon be the 4th cycle meaning I will be 2/3 done with
chemotherapy. I have mixed feelings this time-a can't wait for it to be done and an "Oh, God, will there be new surprises for me to manage this time" feelings. I keep reminding myself that the Almighty gives us challenges that are normally within our capacity to handle. If we have faith and stand upright to face those challenges.
The dentist's appointment list is full today so I have booked an appointment for Wednesday June 13(tomorrow) to see her regarding my blisters/sores in my mouth. It felt as though my gums are affected as well. Could it be due to too much chewing of meat or this is something that is "due" as well whether or not I chew meat. It will be interesting to see what she can find out on what's happening in my mouth and what she will recommend to ease the painful sensation whenever I tried to eat and swallow food and drink.
The gastric pains have completely disappeared but I continue to drink horlicks as my drink for breakfast, mid-morning, at tea-time and after dinner. I hope the pains will forget about me and not pay me a visit again. Obviously avoiding hot, spicy and acidic food has helped together with the medication provided by my Onco. I just have to make sure that I am not tempted by spicy food again until after all the treatments are over.
The bum is still sore each time after bowel movement and that is beginning to worry me. It is no fun when both ends of the digestive system is hurting. It may be my imagination but I thought I spotted blood and that is not good. Especially since I need to preserve whatever blood I produce in my body to be at a healthy level. The psyillium husks and Fibrecleanse help to ease bowel movement but it seems something is amiss with the passageway (to put it delicately) that it feels like there is a cut or tearing that is so painful. I am at my pre-chemo high-energy phase right now and even then it doesn't seem to heal, what more when I have the FEC WMD drugs coursing in my system and blocking all cell renewal and repairs during the first week post chemo starting tomorrow.
I blush just to think of how I was going to explain this to my Onco DDIW. But I need to and I hope it is nothing serious. My mind is getting rather creative and I really need to put it at ease that this is again something temporary like all the other side effects. If it means I have to go on liquid diet to sort it out, I will be more than willing. Anything to get rid of the discomfort.
My right (chemo arm) is still stiff and hurting although massaging it 3X a day with minyak gamat and nutmeg oil has helped to loosen the tight feeling along my forearm and elbow. I hope there will be a good vein to use for Thursday's 4th chemo cycle.
I must say I am getting used to all the pains and am able to function normally and run my usual routine. I do need to remind myself though that I must not take all these pains for granted and wave them aside. It is so easy to be positive and tell myself that these are temporary and "that will also pass", However, if these turn out to be "messages" from my body which is trying to tell me something and I have ignored them, then I will have myself to blame should it be the tip of an iceberg of something more serious.
Other than all that, life goes on as usual. I am pursuing my personal projects and keeping active when the energy level is high, careful not to get into scraps and falls due to my accident-prone nature. I have not started teaching my helper/assistant Basic Beginners English yet other than the customary greetings and names for things in the kitchen( I will need to get a workbook for her if she is really serious about learning) Instead I have been picking up a lot of Indon words!
How Time flies....it will soon be the 4th cycle meaning I will be 2/3 done with
chemotherapy. I have mixed feelings this time-a can't wait for it to be done and an "Oh, God, will there be new surprises for me to manage this time" feelings. I keep reminding myself that the Almighty gives us challenges that are normally within our capacity to handle. If we have faith and stand upright to face those challenges.
The dentist's appointment list is full today so I have booked an appointment for Wednesday June 13(tomorrow) to see her regarding my blisters/sores in my mouth. It felt as though my gums are affected as well. Could it be due to too much chewing of meat or this is something that is "due" as well whether or not I chew meat. It will be interesting to see what she can find out on what's happening in my mouth and what she will recommend to ease the painful sensation whenever I tried to eat and swallow food and drink.
The gastric pains have completely disappeared but I continue to drink horlicks as my drink for breakfast, mid-morning, at tea-time and after dinner. I hope the pains will forget about me and not pay me a visit again. Obviously avoiding hot, spicy and acidic food has helped together with the medication provided by my Onco. I just have to make sure that I am not tempted by spicy food again until after all the treatments are over.
The bum is still sore each time after bowel movement and that is beginning to worry me. It is no fun when both ends of the digestive system is hurting. It may be my imagination but I thought I spotted blood and that is not good. Especially since I need to preserve whatever blood I produce in my body to be at a healthy level. The psyillium husks and Fibrecleanse help to ease bowel movement but it seems something is amiss with the passageway (to put it delicately) that it feels like there is a cut or tearing that is so painful. I am at my pre-chemo high-energy phase right now and even then it doesn't seem to heal, what more when I have the FEC WMD drugs coursing in my system and blocking all cell renewal and repairs during the first week post chemo starting tomorrow.
I blush just to think of how I was going to explain this to my Onco DDIW. But I need to and I hope it is nothing serious. My mind is getting rather creative and I really need to put it at ease that this is again something temporary like all the other side effects. If it means I have to go on liquid diet to sort it out, I will be more than willing. Anything to get rid of the discomfort.
My right (chemo arm) is still stiff and hurting although massaging it 3X a day with minyak gamat and nutmeg oil has helped to loosen the tight feeling along my forearm and elbow. I hope there will be a good vein to use for Thursday's 4th chemo cycle.
I must say I am getting used to all the pains and am able to function normally and run my usual routine. I do need to remind myself though that I must not take all these pains for granted and wave them aside. It is so easy to be positive and tell myself that these are temporary and "that will also pass", However, if these turn out to be "messages" from my body which is trying to tell me something and I have ignored them, then I will have myself to blame should it be the tip of an iceberg of something more serious.
Other than all that, life goes on as usual. I am pursuing my personal projects and keeping active when the energy level is high, careful not to get into scraps and falls due to my accident-prone nature. I have not started teaching my helper/assistant Basic Beginners English yet other than the customary greetings and names for things in the kitchen( I will need to get a workbook for her if she is really serious about learning) Instead I have been picking up a lot of Indon words!
Monday, June 11, 2007
A Relaxing Monday
June 11 (day 19 of Cycle 3)
I felt strangely tired today and decided not to go out to see the doctor yet. Syukur Alhamdullillah the gastric spasms have spaced out and slowly disappeared, perhaps due to the doses of Nexium and perhaps due to the mugs of horlicks that I have been imbibing throughout the day everyday since I was informed by my friend's Mum that it helps her manage her own acid tummy. Whichever it was I am so thankful that I have one pain less to bear.
My right arm is still hurting and I continue to rub the nutmeg and gamat oil. I have given up on the steroid cream as it did nothing for me. The arm still feels tight when stretched and I can still feel the lumps of possible clots along the affected veins. This is one of the items that I need to raise with my Onco in case it causes a problem with the next Chemo due on June 14 , just 3 days from now. I massaged the arm gently 3 or 4 times a day with the oil and put a warm compress afterwards. It helped to relieve the pain but the tightness starts to creep up again after a while. I could feel the hardened veins below the skin.
The mouth sores have not improved. I tried to check for myself using a torchlight and a mirror to see how many sores there are. Most are concentrated at the far end of my tongue and back gums, near where the tonsils are on the left side. I am unable to sight anything perhaps because I don't really know what I should be expecting to see. I have been gargling with salt water and sucking on strepsils and lonzenges to keep my mouth bacteria free but it feels as though more sores have surfaced. I had tried to apply glycerine borax using Q-tips and I know I did reach the sores as I squirmed when the Q-tips hit home. I will need to see my Dentist who will be able to inspect and determine what can be done to make sure the situation doesn't get worse. Eating is a challenging activity and imagine having tears running down my cheeks when I am having a nice meal!
As for bowel movements, that has been regular. My only issue on that is because of previous bouts of irregular bowel movements and constipation, I experienced extreme discomfort when moving my bowels. So extreme that sometimes I dread having "to go" because I can almost imagine the pain before I did. So another item to alert my doctor and seek his advice on what can help to relieve the discomfort. My good bowel movements could also be due to the Fibrecleanse mix that I take first thing in the morning ,half an hour before breakfast. It is supposed to aid in flushing out the colon but not to offer any pain relief.
I spent the day grooming my helper on the other activities in the house that she can help me with. Actually there isn't very much to do other than the basic stuff but will need to crank up some more so that she doesn't get bored and homesick. She seems to enjoy experimenting in the kitchen. I told her that I will teach her English for an hour a day once we have established a proper routine of what her chores are on a daily basis. That would be a win-win situation for both of us, she learns a new tongue and I get a "speaking" helper.
I felt strangely tired today and decided not to go out to see the doctor yet. Syukur Alhamdullillah the gastric spasms have spaced out and slowly disappeared, perhaps due to the doses of Nexium and perhaps due to the mugs of horlicks that I have been imbibing throughout the day everyday since I was informed by my friend's Mum that it helps her manage her own acid tummy. Whichever it was I am so thankful that I have one pain less to bear.
My right arm is still hurting and I continue to rub the nutmeg and gamat oil. I have given up on the steroid cream as it did nothing for me. The arm still feels tight when stretched and I can still feel the lumps of possible clots along the affected veins. This is one of the items that I need to raise with my Onco in case it causes a problem with the next Chemo due on June 14 , just 3 days from now. I massaged the arm gently 3 or 4 times a day with the oil and put a warm compress afterwards. It helped to relieve the pain but the tightness starts to creep up again after a while. I could feel the hardened veins below the skin.
The mouth sores have not improved. I tried to check for myself using a torchlight and a mirror to see how many sores there are. Most are concentrated at the far end of my tongue and back gums, near where the tonsils are on the left side. I am unable to sight anything perhaps because I don't really know what I should be expecting to see. I have been gargling with salt water and sucking on strepsils and lonzenges to keep my mouth bacteria free but it feels as though more sores have surfaced. I had tried to apply glycerine borax using Q-tips and I know I did reach the sores as I squirmed when the Q-tips hit home. I will need to see my Dentist who will be able to inspect and determine what can be done to make sure the situation doesn't get worse. Eating is a challenging activity and imagine having tears running down my cheeks when I am having a nice meal!
As for bowel movements, that has been regular. My only issue on that is because of previous bouts of irregular bowel movements and constipation, I experienced extreme discomfort when moving my bowels. So extreme that sometimes I dread having "to go" because I can almost imagine the pain before I did. So another item to alert my doctor and seek his advice on what can help to relieve the discomfort. My good bowel movements could also be due to the Fibrecleanse mix that I take first thing in the morning ,half an hour before breakfast. It is supposed to aid in flushing out the colon but not to offer any pain relief.
I spent the day grooming my helper on the other activities in the house that she can help me with. Actually there isn't very much to do other than the basic stuff but will need to crank up some more so that she doesn't get bored and homesick. She seems to enjoy experimenting in the kitchen. I told her that I will teach her English for an hour a day once we have established a proper routine of what her chores are on a daily basis. That would be a win-win situation for both of us, she learns a new tongue and I get a "speaking" helper.
My adopted sister's house in serene and peaceful Bagan Datoh at S.Cik Maja is a place to go to totally unwind and escape "civilisation" but the people there are much more civilized than some of the folks we run into in the civilised cities. The "parit" where my nephew is fishing contains loads of tilapia fish, so many that you don't really need to use a fishing line. What they do is place a net and some poor fish will get caught in the net every morning. Their cats are fed fresh, raw fish and are healthy and strong as bears!
When July comes and after I complete my 5th chemo, I hope to spend a weekend in Bagan Datoh just for a change in scenery and to be with folks who are so genuinely happy. Life is simple, community spirit is really very strong, respect is based on how involved you are with the community rather than how wealthy you are and best of all, there's hardly any traffic and smog. The air is so fresh and if there is any smoke (not smog) it is from burning dry leaves and coconut husks in the evenings to scare away the mosquitoes. A nice change indeed from the daily background sound of Mat Rempits and honkings and blarings of "Old Newspaper, Surat Khabar lama!" when all one needs is some peace and quiet when the body and mind is tired....Bagan Datoh, here I come.
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