Updates

Updates

[24 Jan 2009, 02:35:32 PM]

I'm sorry for the lack of updates. I have been out of action most of the time, mainly due to fatigue, headache and nauseating. I still want to blog down what I went through so that the records would be of some benefit to people who are going through similar situation as me.


Anyway, I went to collect the PET scan results on the same day I went to see the colorectal surgical oncologist. From the scan, there was a new lesion which previously didn't show up on the CT scan. To cut the long story short, I would not be going for any surgery at this juncture and would continue with chemotherapy. Saw Dr Chia on Tuesday, the last before he leaves for the States. The good news was that my cancer marker was stable at 62. I asked to change back to oxaliplation (instead of cisplatin) as I had bad side effects which made me miserable. Before I left the clinic, I said to him, "Dr Chia, I didn't get you anything, except this thank-you card." (It was a simple card from Precious Moments.)


He was slightly taken aback, and gave me a hug. He almost made me tear at that moment. I am grateful and thankful for doctors like him.


I was updating Liz and Ser on my progress during breakfast. I asked if there was anything I could leave them as remembrance. Liz was sobbing and Ser's eyes went teary red. I was fighting very hard to hold back my tears. I had to put it in a lighter way so that we could continue our morning routine.


I have decided to start writing some "farewell" and thank-you notes to my very big group of supporters and of course my loved ones (provided I could still think coherently and write properly). I think my body is showing signs of fatigue from the prolonged chemo treatments. I might look "normal" but the energy level was only at best 40%. There are good days and bad days and really down times. It was unpredictable.


As always, I like to inject some humour in my talk about death. I reminded Shuai Ge not to put my best and most expensive jewelry when I die. "Don't later burn already all turn into ashes. Pass them down hor." I have decided to get a niche near to where we are staying. Shuai Ge said, "Oh good. Can go and talk to you everyday!"



Dates: Cycle 5
treatments on 2 and 9 Feb.

cycle 4b, day5

cycle 4b, day 5

[6 Jan 2009, 03:46:18 PM]

Went for cycle 4b last Friday.

Did PET scan yesterday.

Still on low energy level. So sorry you have to wait a little longer before I could put up a more detailed update.

cycle3b, cycle 4a

cycle 3b, cycle 4a

[30 Dec 2008, 06:49:48 PM]

I'm still around, just tired. The side effects have temporarily dominated over me. I still want to log what I went through, hopefully when I am up to it soon. There's a change in one of the drugs used in cycle 4a, which is making me miserable. Anyway, hope the new year 2009 will be better, healthier and happier for everyone!

cycle 3a, day6

cycle 3a, day 6

[10 Dec 2008, 04:02:41 PM]

"I have good news for you." That was what my doctor said when we entered the consultation room. "Your marker has come down nicely to 77," announced a rather delighted Dr Chia. It was a great relief to us too, seeing that adding avastin to the regime works.


It wasn't so anxiety-free. Though "Shuai Ge" and I had talked about my death, we haven't really got down to the nitty-gritty details. I thought of those I need to inform, especially those he is not so familiar with, I found myself smiling when I counted so many of them. These are my young friends and friends I got to know through the internet. I think I may have to trouble littlegeo, starrie and gin to help me do the informing. I must find the energy and time to do a list of who-to-inform.


SSN Tan came to find me while I was waiting for my prescription. She passed me my Christmas present. I was surprised how she knew I would be in the clinic. She laughed and said she had a radar hidden somewhere. She invited us to join the Christmas party this coming Saturday and I agreed. I hope I won't back out last minute. *fingers crossed*


It was another crowded day at the clinic. The nurse who helped me do the plug was Cristle. She tried to be gentle, but the pain factor was still 7. There was a case of allergy, which I found out was a reaction to oxaliplatin. The patient next to me had bouts of vomitting which also made me want to puke. It might be psychological, but the smell of a certain medicine really made me sick. I couldn't understand the way the clinic works. Two other nurses tended to me when Cristle wasn't available. Both had to take off tapes to see which tube lead to which medicine. In the process, they caused me much pain. The plug was heavy and they didn't hold it (or asked me to help support it) while examining the other tubes. I wondered why the same nurse couldn't administer my medicine since she would be the one who knew about the way the plug was set. I don't care. I'm going to tell the nurses to label those tubes properly in cycle 4a, rather than un-taping and taping each time they need to see which tube goes to where.


The same side effects tormented me. Insomnia, loss of appetite, nauseating, fatigue and stomach wind. I went over to Joyce's house after a two-month hiatus. I don't know if the increased dosage has caused the side effects to be amplified. My tongue has lost any sense of taste. The vomitting was worst on Wednesday. Dr Chia did prescribe me anti-vomitting medicine. I didn't take any. I prefer to puke. I feel better after the puking. If I take anti-vomitting medicine, I always feel worse. That is my experience.


This is for record purpose.
Cycle 1 Gemzar + oxaliplatin
Cycle 2 Gemzar + oxaliplatin + avastin
Cycle 3 Gemzar (increased dosage) + oxaliplatin + avastin


I can now conclude that CTX and MTX affect one's ability to process information and think logically. Now I'm wondering which of these affect(s) one's moods.


Sharing with you this steamed 9-layer kuih/kueh which helper and I attempted. Did this the day before my review. My way to de-stress.

cycle 2b, day8

cycle 2b, day 8

[28 Nov 2008, 04:07:55 PM]

It has been a week since I finished cycle 2b. My emotions went on a roller coaster, as did my state of well-being. After cycle 2b, I was so hyper-active, I had insomnia last Friday, my mind was in an overdrive mode and I talked practically non-stop during the weekends. Whilst I was lying on the bed, trying to bore myself to sleep, I thought of at least a week's blog-worthy entries, as though my life was "played" in my mind. I was in a happy mood that night. However, it didn't start as so.


My chemo appointment was at half past twelve. I needed to be in the clinic an hour early for the blood test. When I put in my blood test form in the tray, mine was the first. "Oh, good," I thought, "It shouldn't take long before my turn." I was wrong. One of the counter staff went for her lunch break, leaving this rather slow-moving lady manning the counter. Before she processed my form, there were several others in front of her computer (which I missed). While keying in the necessary information into the computer, she was interrupted several times. There was this man who kept insisting she didn't return some of his forms and kept asking her for them. She also insisted she didn't keep any of the forms and she did return everything to him. Then came the social officer, who asked her. Then the lab technician. Then the social worker again. I was quite disturbed by what I saw. After all the interruptions, the counter staff entertained this query from a patient's family member about a bill. She went on to proceed that request instead of processing the blood test forms. I thought I was going to lose my cool and storm towards her to tell her to hurry up with the blood test forms. I was getting impatient because I knew I was running late. Of course I was playing all these emotions in my head.


I started to think why she was working as a counter staff and about her attitude. Then I thought, since it was near year end, it would be nice to take the feedback form and give my comments and observations. How about someone reviewing the blood test form processing procedures? I was smiling to myself, dwelling on such matters. After some waiting, it was my turn. The lab technician looked like a mini-size Yati. I asked her to help me pass the VCD to Yati and Prue. She poked the wrong place and hurt my arm. I would want that sweet-looking lab technician anytime. Her needle-poking skill is superb, with pain factor almost close to zero.


Then it was another waiting game. Usually it takes half an hour before the blood test results are out. It took more than an hour that day. By the time I went to the 3rd floor, it was way past my appointment time. I heard the counter staff calling the nurse station about my case. I went forward to explain why I was late. The counter lady gave me another appointment time. Yes, I needed to wait another one and half hours. All the time she was smiling and explained the clinic has been rather crowded of late. She understood my situation.


I took a quick bite with "Shuai Ge" at the cafe downstairs and returned to wait for my turn. I began to look at my past marker readings (since I had nothing to do, except listening to my walkman handphone) and discovered to my horror, the recent reading was the highest since epotoside (2007 regime). All the waiting had made me tired and sleepy.


If not for Imelda, I think my day would have been worse. I was given a bed, instead of a recliner chair. Plus a remote control for the tv. Yay! Imelda's plugging skill rocks. I rate her skill with pain factor 2. She made sure I was comfortable, apologised when she had to attend to something else first and got me a hot pad nicely wrapped up. It was a comfortable infusion after that. The young Chinese nurse however paled in comparison, and hurt me when she removed the plug. Ouch! I wondered why she couldn't feel the weight of the whole plug. How could she remove it without supporting it first? *Shrugs*


I was reflecting on the side effects of this regime, and thinking to myself that I didn't get headaches. I thought too early. A headache started on the right side on Sunday. It then moved to the usual left side, tormenting me for a few days. It got very bad on Wednesday night that I had to wake "Shuai Ge" up to rub my temples with medicated oil. I lost my appetite to eat and that "conquer the world" feeling I had. I just wanted this phase to pass quickly.


My rest week starts today. I will be seeing my onco next week for my usual review and of course the result of this regime. Please keep me in your prayers.


P.S. I think littlegeo could smell my tiramisu when I made one. Hahahaha!

regime#7, cycle2a, day1

cycle 2a, day1

[14 Nov 2008, 08:17:17 PM]

I had an early appointment with Dr Chia today, leaving the house shortly after nine. When we entered the room, I saw the expression on Dr Chia's face and instinctively guessed it. My marker has risen from 106 to 187. However, I was thankful for the overall better blood counts. My liver function readings, without the MTX, are within the normal range.


We were abit shocked by the almost double in readings. Dr Chia suggested adding avastin in today's cycle as previously planned. I agreed. He was really understanding, as that would mean additional costs for us. He doesn't want us to exhaust ourselves and not being able to continue the marathon fight. He was hoping to see my condition stabilised first before going away. I was really touched by his concern and thoughts, and a kind gesture. We were still recovering from the shock when I went to get my queue number from the clinic. Since it was going to be more than two hours wait, we rang Dr See's clinic to see if it was possible to drop by. (Dr Chia also suggested that.)


On my way there, "Shuai Ge" and I discussed about the latest readings. It was unexpected as the last treatment with gemzar and carboplatin/cisplatin in 2005 brought my readings down to single digit. I don't know if my cancer cells have become more resistant. We discussed and decided there were some questions we wanted to ask: At what point would we consider the gemox regime as ineffective and to change cocktail? What are the options then? Do I need to do another CT scan (as Dr Chia suggested)? We are seeing a rising trend of CA125, how many more rises do we then change regime?


Dr See answered our questions and shed light on my options and action plan. We were alot calmer and settled after the consultation.


Back at the clinic, it was really packed. Waited almost two hours before my number flashed. There were three Filipina nurses and only one local nurse in the room I was in. Apparently they were short-handed and held back by a meeting. The Filipina nurse Cherise did the plug for me (pain factor 7). The plug looked like a centipede (I took a pciture of it) because of the three cocktail drugs plus two liquids sequentially entering my body. Learnt something new today. Oxaliplatin is not compatible with normal saline and must be flushed with G5. And for flushing avastin, normal saline is used. That explains the two bottles of liquids. Since no nurse was in the room when the machine beeped, I pressed the call bell twice, each time for the two drugs. By the time I finished the treatment, it was already six o'clock. Sleepy, tired and hungry. And moody.


Will be back at the clinic for cycle 2b in a week's time. Let's hope there will be more (gentle and alert) nurses on duty then.

regime#7, cycle1b

cycle 1b and rest week

[11 Nov 2008, 02:42:04 PM]

It was my first time having chemo on a Saturday. The clinic was on half staff strength and only Jasmine Suite was available. Went to the clinic before eight to get my blood tests done. Was attended to by a male nurse. They almost missed my number.


While Chan was preparing the plug, we had a brief chat. He asked if I have been having treatment for awhile, I replied, "Four years plus." He was surprised and told me he only joined this clinic for a year. I jokingly said I was more senior than him then. He didn't pre-warn me or ask me to take deep breaths before setting in the plug. He didn't inflict much pain (maybe I had no time to think about the pain or feel it). He injected the pre-med very slowly into the tube and the "needle-pricking" sensation was minimal, much to my delight and surprise.


I am blogging how I felt so that it could be used for future reference. I had fatigue during the first four-five days. The tiredness just hit me, especially in the afternoon, where I had to lie down and sleep it off. There was also loss of appetite or the lack of it. If I wanted anything to eat, it would be something salty or fried food. I had bouts of stomach cramp and intestinal discomfort. The cause could be drinking vitagen or cold food. I had to avoid cold drinks, cold food and even vegetables direct from the fridge. I need to keep warm too as coldness can cause much discomfort. I try not to wash my hair so often to minimise the hair loss. The constipation problem was no longer an issue after consuming the herbal medicine prescribed by Zhang yishi.


Other than extreme fatigue and poor appetite, I have no other complaints. I would be seeing Dr Chia this coming Friday to see if I respond to this chemo cocktail combination. Five more cycles to go!