Wednesday, June 28, 2006

Radiation - Day Eleven

Today’s session was slightly different from previous sessions because they took some film of the treatment area to check the measurements. That’s to ensure that the measurements have not changed. They took film from the left side only. The radiation therapist said that the left side was able to capture all the pictures necessary and so the right side was not needed.

I’ve asked the radiation therapists how long the radiation was on my body, but I was told that it’s not a measurement of time. So I’ve been counting in my head each time I hear the radiation machine go on: one-one-thousand, two-one-thousand, etc. For the lump above my neck, it’s about 30 seconds. The left glancing field is about 15 seconds, followed by 3 seconds. The right side is about 15 seconds, followed by 2 seconds, then another 2 seconds.

For the left and right sides, the long dose is the radiation being administered at one even dose over the entire treatment field. Then the MLCs (multi-leaf collimators) are adjusted to block some of the radiation to the heart and lungs and the short bursts aim at the cancer area and avoid the heart and lungs. This is my understanding of what’s going on, but I can’t really be sure I’ve got it straight. It’s quite complicated and it’s hard to get a clear explanation from the doctor or radiation therapists.

Still no side effects, other than slight stiffness and tightness in right chest when I move my arms at extreme angles. I felt a bit tired yesterday, but I think that was due to lack of sleep and abundance of active children. So far, so good. Yay.

Thursday, June 22, 2006

Radiation - Day Seven

Start of second week of radiation. So far, no side effects other than a slight stiffness in the right chest and arm areas. The skin hasn’t changed color yet.

Met with the radiation oncologist. He said I’m getting 50.4 Gray in 28 sessions, so 1.8 units per fraction. This is slightly different from the 50 Gray in 25 sessions recommended by the other two radiation oncologists I went to see. I’m getting my current dosage because lower doses spread out over more sessions will minimize skin reactions, says the doctor.

The doctor said the radiation to the neck (for the supraclavicular lump) will involve the larynx, so I may have a sore throat after a while. It will also hit the apex of the lung and after a few weeks, I’ll be able to see a burn mark on the skin on my back. The radiation will enter my body from the front, go through my body, and burn the skin on my back. Yikes.

Doctor examined my chest and said there’s no fluid build-up. He said stretching my arms is okay, but avoid too much heavy lifting for long periods of time.

I’ve taken it upon myself to make sure I feel better about my treatment. The day after that first session when I felt no confidence that my treatment team was seeing me as a human being, I went in and introduced myself and asked all their names and their positions. They seemed rather shy, as if they weren’t used to being friendly with patients.

Since then, we’ve chit-chatted and I’ve asked them questions about themselves. The lead radiotherapist (at least, I think she’s the senior one) is a mother of a 6-year-old and a 4-month-old so she and I talk about babies. Two of the other ladies are from the Philippines and are very young -- in their twenties. They’re quiet and shy, but will engage in a bit of pleasantries when I initiate it. Then there’s the head of the department who is quite smiley and friendly to me now.

I took Josie to one session and had her wait in the waiting area while I was in the treatment room. She kept the other patients and staff entertained. One of the radiotherapists calls her “the entertainer”. Now that I’ve started warming up to the radiotherapists and they’ve met Josie, maybe they see me more as an individual rather than a job. I certainly hope so.

Wednesday, June 14, 2006

Radiation Therapy - First Day

After so many delays, I was so relieved and happy to be starting radiation therapy. I was a bit nervous about it a month or so ago after reading so much about radiation causing secondary cancers, but I’d finally come to the conclusion that I was better off getting radiation – better the devil you know than the one you don’t.

I walked into the treatment waiting area, smiling at the other patients and greeting the staff. Considering what I’d been through so far, I was truly in a great mood and looking forward to radiation. Then it was my turn and I walked into the treatment room. There were three women in there. None of them said “Hello”. One of them said, “Put your bag on that table and remove your top and bra.” That was all. I had walked in there with a spring in my step, ready to meet the team that was going to treat me for the next six weeks and get to know them personally, and instead, I didn’t get so much as a greeting. I literally stopped in my tracks, I was so taken aback. I did as I was told, then plucked up the courage to say, “A ‘hello’ would be nice.” Then I immediately wished I hadn’t said that since I’d have to deal with this woman for the next six weeks, and it certainly wasn’t wise to get on her bad side, especially since my life could be in her hands. But I don’t know that because I don’t know who she is.

Not only did none of them greet me, none of them told me what her role was. The woman who told me to put my bag down and remove my clothes might have been a nurse, the radiation therapist, the radiation technician, a medical student, the cleaning lady, for all I know. She didn’t tell me who she was and neither did the others. There were about five minutes while I was getting undressed and getting onto the treatment table during which time they could have introduced themselves to me and told me what each of them did. Normally, I would have chit-chatted with them and asked them about themselves, but I was so stunned by the reception I got upon entering the room, I was almost speechless. And it takes a lot to make me speechless.

With that single moment upon entering the room, my mood went from optimistic and confident about my treatment to confused and anxious. And it went downhill from there. I lay on the table and the women moved around the room and hovered over me occasionally, checking measurements and equipment, presumably. But again, I have no idea because they didn’t tell me anything about what was going on. I think one of the women said something about making some more markings or something. I wasn’t sure. Since I wasn’t given any specific instructions about what to do or descriptions about what was happening, I just lay as still as I could the entire time, worried that I might throw off the measurements or something if I so much as took a deep breath. Then Dr. Lee walked in, but I didn’t know it for a while because I was lying still and couldn’t raise my head to see him come into the room. He didn’t say anything to me like, “Hello Shin, I’m here to check the markings.” Or whatever he came in to do. I don’t know. He didn’t tell me.

He and the other women (Three or four of them? Not sure.) hovered over me and drew on my chest for a while and then suddenly, they were all gone. They didn’t say, “We’re going out of the room now to start the treatment. You need to lie perfectly still. When you hear the loud humming noise, that will be the radiation being applied to your body. This first one will come from your left side and aim at your chest. It will last about three minutes and then we’ll come back to line you up for the next dose. If you need to talk to us to say you need to sneeze or anything like that, just speak out loud and we’ll be able to hear you from the other room. Do you have any questions before we start?” That’s what I expected them to say to me, but they didn’t. One minute they were all in the room and the next minute they were all gone. I didn’t know if they had started, how long it would take, whether I needed to take shallow breaths or what I should do if I needed to sneeze or what part of the procedure they were doing, or anything. I had no idea what was happening.

When they all came back, I asked them if they’d started and asked them to communicate with me about what was going on. Dr. Lee laughed a bit shyly and said it was a cultural thing. After that, he told me when they were leaving the room again. And the woman who was marking me told me a little bit about what was happening. It could very well be that they told me a thing or two even before I asked for more communication, but I didn’t register it or hear it above the sounds of the equipment and such. If they did tell me anything, it wasn’t clear or enough information for me, because I still didn’t know what was going on.

I think a person in my circumstances needs a bit of leeway in the processing of information. I’ve been to 16 doctors in two countries. I’ve read a dozen books and about a hundred articles on the Internet. I’ve talked to many other cancer patients. My head is full of information that I’m struggling to understand with my limited knowledge and lack of medical training. And it’s not just the intellectual or mental struggle.

I’ve spent the last six months going to doctor meetings and hospitals, as many as 13 times in one week. I had to tell my three-year-old daughter that I’m going shopping instead of telling her I’m going to another doctor appointment after she told someone that “Mommy’s going to the hostipal. She’s going to die.” I’m walking around trying to live as if I’m going to live a normal life span, but knowing that statistically, I have a 16% chance of being alive in five years. I think about what my children would be like without me. Then I read about new research and I think if I can just hang on for another ten years, they’ll have found a cure for my cancer. I think my treatment’s going well, and suddenly, some complications occur and none of my doctors can figure out what’s wrong and what to do about it, so I have to take the initiative and find another doctor. I think my doctors know what they’re doing and are communicating with each other to design the best course of treatment, then find I have to be the team leader and make sure they’re speaking to each other. I’ve had to remind nurses to give me blood tests they forgot or medication they said they’d give me then forgot to give me. I’ve had to remind doctors to order tests that they forgot to order. I feel like my life is in my hands and it’s my job to make sure all the doctors and nurses are doing their jobs because if I fail in that, then I’ll die.

This is too big a responsibility for a mother of two young children who is seeing very little of them because she’s too busy trying to save her own life. I’m not trained or experienced in this. I’ve never had to save my own life before and I don’t really know what I’m doing. I’m doing the best I can by educating myself about my cancer and participating as much as I can in my treatment. I think many Singaporeans hand their lives over to doctors and expect the doctors to do all their thinking and make all their decisions for them. I can’t do that. I’ve already suffered too many setbacks in my treatment due to mistakes doctors have made. And after all, doctors are human. They have their own lives, families, and worries, on top of the responsibility of people putting their lives in their hands on a daily basis. I don’t believe patients should leave everything to doctors. I believe doctors and patients should work as a team. A patient can’t expect her doctor to diagnose a condition if she doesn’t tell the doctor about the symptoms she’s been experiencing. That’s a failure of the patient. But a doctor can’t expect a patient to communicate such things if he doesn’t create an environment where the patient feels comfortable and safe in asking questions and sharing information.

Back to the communication problem as a cultural issue. I’ve lived here for ten years now and I know that people in Singapore don’t communicate as they do in the U.S. Back home, you say hello to the person at the supermarket check-out counter and often exchange a bit of friendly conversation as the cashier is tallying up the groceries. Here, the cashiers don’t even make eye contact, and when I say hello to them, half the time they don’t even answer back. I’ve gotten so used to this distance and lack of social interaction that I’m not as openly friendly as I used to be and have started treating store clerks like nothing more than machines that do a job for me. That’s sad. I’ve grown up in both Asian and Western cultures and I understand that there are cultural differences. But if the treatment of patients I’ve seen so far here is a cultural thing, I think medical personnel should be trained to put aside their Asian culture in favor of basic human courtesy and kindness.

No matter what the culture, I think when you are about to treat a cancer patient who is most likely extremely anxious, terrified of dying, and confused about what’s being done to save her life, you can greet that patient with a smile and a hello at the very least. Some friendly, reassuring words wouldn’t be bad either.

With cancer, I think medical staff need to be especially sensitive. Most of the time, I feel like I’m being treated as a disease and not a person. It’s all routine for them and they just see me as a part of their job, not as a human being. I used to be a teacher, and I bet that if their children were in my class and I saw their kids as merely a job rather than as individuals with unique needs, they wouldn’t like it. Well, there’s certainly more at stake with cancer patients.

I’ve been to doctors who wouldn’t even look me in the eye. They kept their eyes buried in my medical file while talking to me. If they don’t invest in me emotionally, then I suppose they won’t care if I don’t make it. Maybe that’s why many doctors learn to be emotionally detached. That way, they won’t feel anything when the patient dies. Maybe these doctors think that emotional investment in the patient will impair their judgment and ability to reason. But I think there’s a middle ground between being completely detached and emotionally buried. I believe a doctor or nurse can do his job better, and with more fulfillment, if he looks at every patient as an individual person, rather than a disease or case number.

I think my doctor understands this more than most doctors here. I’d heard that he was warm and friendly and that’s why I sought him out. And today, he asked me about my kids and when I told him what ages they were, he wrote it down into my file notes. So now my file tells him not just that I’m Stage IV breast cancer, it tells him I’m a mother with two young children. But he’s unusual for Singapore. He, Dr. Whang, Dr. Hong, and Dr. Hoe are the exceptions here, and I suppose that’s why I went through every oncologist in Singapore before settling on them. But they have a lot of work to do before the rest of the medical community, including their own staff and nurses, catch up to them.

And even these doctors, as exceptional as they are compared to others here, could use some advice from patients about how to treat them – providing information clearly, making patients feel comfortable and encouraging questions, making patients feel they are taking control of their lives and actively participating in their fight for life and not just putting their lives in the hands of strangers, however competent these strangers may be.

I did a research project a while back about medical tourism and the Singapore government’s plans to make Singapore a medical hub for foreigners seeking treatment. Westerners preferred going to Thailand, India, and the Philippines because the people in these countries were more friendly than in Singapore. If Singapore wants to compete, its medical industry needs to do some serious training on communication skills, interpersonal skills, bedside manners and basic common courtesy and etiquette. They need to train nurses here to say hello and introduce themselves to patients upon first meeting. They need to be trained to talk to patients and tell them what’s happening and what to expect. It may be a cultural thing, but I can’t believe that even Singaporeans wouldn’t appreciate a little smile and common courtesy, especially when they’re going through something as emotionally challenging as cancer treatment.

I still have a lot of questions left unanswered, but I felt I was testing my doctor’s patience after he lost his patience with me twice for asking so many questions. So I decided I had to just go with his recommendations since I couldn’t understand everything he was saying. I’m trying my best, but I can’t possibly understand everything my doctor does because if I did, I suppose I could be a doctor myself.

But because of some of my outstanding questions and the lack of communication of the radiation team, as well as the feeling that I’m just a job and not a person to them, I’m losing faith that I’m getting the best treatment possible. If I were their sister or mother on that table today, would they have been as cold and uncommunicative? If they were on that table today, would they have wanted to be treated the way they treated me, or would they have appreciated a bit of courtesy and some explanations as to what was going on?

If they’re seeing me as nothing more than a case number and not a person, then I’m afraid they’re probably not being as careful or conscientious about what they’re doing. Their markings seemed a bit haphazard and lacking in care and attention to minute movements. I think if I were in their position and I was marking up my own mother or sister for treatment, I’d be oh so careful and sooooo very attentive to the patient. I don’t feel like I’m getting that. It may be that what I consider to be haphazard markings really aren’t. Maybe they’re supposed to be like that. But in the absence of any explanations or reassuring words from them, I can only imagine that they don’t really care how accurate they are and they’re actually thinking about what they’re going to eat for lunch or wondering what’s on TV tonight while they’re marking me up. I don’t feel like they’re putting their best into this. I know that asking people to do their best every single time is a big request. But this is not a project or business proposal; this is a person’s life. I’m afraid they don’t think of it this way.

I was so appalled and frustrated with the radiation team’s behavior today, I thought to myself that people who treat cancer patients should have cancer themselves. They should at least imagine the life of a cancer patient. If I were a nurse there, I’d lie down on that table for a while to see what it felt like. I’d lie there and try to imagine what it must feel like to be so scared and worried about dying. I wonder how many of the nurses have even tried that. Or the doctors, for that matter.

I’ve run out of options and time so I can’t change my radiation team now, but I need to find a way to make peace with my uneasiness and fear that I’m getting less than the best treatment. I need to find a way to feel comfortable with the treatment I’m getting now because I can’t go for the next six weeks feeling this way. If I do and the cancer comes back or I have a secondary cancer, I know I will blame it on the radiation. I’ve read a study that shows a high incidence of secondary cancers in patients who received either the wrong dosage of radiation or inaccurate placement of radiation. And today at my chemo doctor’s office, I met a woman who had breast cancer 8 years ago and had radiation. Now she has cancer in her chest wall and her doctor thinks it was caused by a too-high dose of radiation. So I’m afraid that any tiny error in the dosage or aiming of the radiation will lead to recurrence or secondary cancer. That’s why it’s so important to me that I have confidence in my radiation team – that they’re doing their very best to be accurate and spare my healthy tissue and organs, that they’re seeing me as a person whose life they might prolong or shorten.

I keep reading and hearing about how a cancer patient’s faith and confidence in his doctors and treatment team is related to how long he survives. I’ve even read about some extraordinary cases where patients are cured by their faith alone – they were given placebos but they believed they would be cured so they were cured. I feel if I don’t have faith in my radiation team, the radiation will kill me in the long run. I had complete faith in my chemotherapy and in my surgery. I went into both with confidence that my doctors and I had made the right choices about treatment and that we were working together to fight the cancer. I don’t have that feeling now with radiation. I need to do something about this as soon as possible or the radiation will do me no good and I’ll end up dying from worry and negative energy.

But how do I do this? Do I talk to the doctor and the radiation team? Would that just anger them and turn them against me? Would they understand my concerns and learn from my feedback? I don’t think they’re bad people or even bad professionals. I just think they treat patients the way patients expect to be treated. And since people here are passive, don’t speak up, or take an active role in their treatment, the staff just go along with that and everyone just does their bit. But if the radiation team took my advice to be more human, kind, and communicative, it would benefit everyone – even the passive patients who don’t think or question, as well as the staff themselves. I’m sure this could be a more fulfilling job if they made personal connections with the people they see every day for five weeks in a row, instead of just going through the motions of a monotonous routine. And don’t they WANT to feel like they’re saving lives? Or do they think their job doesn’t matter in the patient’s outcome? Do they realize how much a kind, reassuring word can do for a patient’s outlook or how much power they have over a patient’s faith and confidence? They should know they’re not just mechanics in the process. They should know what a difference they can make in the lives of the patients. Someone should tell them.

Tuesday, June 13, 2006

Not Shingles. Ready for Radiation.

The GP now says the little rash on my right arm is NOT Shingles after all, because Shingles leaves dark scabs when it dries and my rash isn’t forming any scabs. He says it might be a “contact rash” -- maybe I came in contact with a plant or something I’m allergic to. I can’t think what that could be.

Went to see the surgeon for a pre-radiation check of my chest wound. He said the left side has some seroma (fluid build-up) -- maybe 5 milliliters’ worth. But since that side won’t be radiated, it’s okay. The right side didn’t have any seroma, he said. I could tell even before he told me because when I pressed down on a part of the bulge on the left side, the whole bulge moved but when I did it on the right side it didn’t move. Maybe there’s seroma on the left side but not on the right because I’ve been picking up the kids or grocery bags and such with my left arm but not my right. I suppose that goes to show that using the arm does indeed make a difference to fluid build-up. We’ll find out tomorrow for sure whether there’s any seroma or swelling on the right that would get in the way of radiation. The radiation oncologist said the computer scan could tell if there’s been any change.

Saturday, June 10, 2006


I have a little rash on my lower right arm - about 20 little blisters clustered around a band about 3 inches long on my inner arm. It doesn’t hurt, but it itches quite a bit. One of the blisters popped on its own yesterday. I went to a GP (general practitioner) yesterday and he said it looked like shingles, although it’s rare to have it on a limb rather than on the torso or face. The doctor gave me some Acyclovir/Zovirax cream to put on it 5 times a day. Since my immune system is suppressed due to my cancer treatment, I’m more susceptible to viral infections, or any other type of infections for that matter. At least it’s just a tiny area and not full-blown shingles that I’ve read about. Thank goodness for small favors!

Friday, June 9, 2006


My hair’s starting to grow back. It’s about 3 millimeters long and it’s much softer than before. The front’s not growing back as much. I heard that area grows back last. Hope so. I hope I don’t end up with male-pattern baldness after all this! I used shampoo and conditioner for the first time since chemo began. I probably don’t really need it, but it’s fun to pretend I have hair again. Oh, the small pleasures in life! And there are SO many!

Thursday, June 8, 2006

Bandages Removed from Holes in Chest

Quick visit to the surgeon to have a look at my healing progress. No fluid build-up. Removed bandages from holes where drainage tubes had been. Looks okay for radiation next Tuesday (13 June), but go back for a check the day before.

Finally. Never thought I’d actually be looking forward to radiation! Can’t wait! Six weeks of it and then I’m finished with this cancer treatment stuff. Except for the Herception every three weeks... for a year... Still, not as bad as going to two or three doctors a day for weeks on end!

Wednesday, June 7, 2006

Radiation Simulation #3

Radiation oncologist examined surgery site and said we can wait a few days to see if fluid builds up again. The markings done at previous simulation were for 3D or 2D. Still thinks 2D better, but mastectomy surgeon and chemo doc told him I want 3D. Did simulation for 3D -- took about 15 minutes. Will wait one week to see if fluid builds up again. If it does, then we’ll do 2D. If it doesn’t, we’ll do 3D.

Maybe I’m making too much of the difference between 3D and 2D, but from what I’ve read, 3D seems much safer to healthy tissue as well as more effective on the cancer site. And I’ve read enough about secondary cancers from radiation therapy to be as cautious as possible not to damage any healthy tissue if we can help it. I know there’s a point where you should just let the doctor take control and decide what’s best for you, but I feel like if I don’t speak up now and fight for the best possible treatment I can have, I’ll blame the radiation for any recurrence or secondary cancer I get in future. To the doctors, this is just an academic discussion. To me, it’s my life and how long I’m going to live. I know there are some things I should just let go. I don’t think this is one of them.

Also went to reconstruction surgeon #4 for a second visit. He recommends the Becker implant, which has saline in the middle and silicone on the outside, and allows for gradual expansion. He examined me and said I will probably need expansion, rather than a permanent implant straight away. Should go see him 3 months after radiation is finished -- that’s the earliest he recommends I have reconstruction.

Tuesday, June 6, 2006

Drains Removed! Again!

Had drains removed. After removing all the bandages from the surgery site, the surgeon just slowly pulled at the tubes until all the tubing came out -- 15 cm. of tubing from each side. Unlike the first time, it didn’t hurt at all. Total amount of fluid in the drains since surgery: 80 ml. on right, 50 ml. on left.

It’s pretty amazing that a long piece of plastic can be sticking out of your body, then you pull out the plastic, and the hole just repairs itself.

Went for an hour-long walk at East Coast Park with Tony tonight. Felt good. After getting the drains out, I was just itching to go for some exercise. I stopped all exercise for a week after surgery and could definitely feel the difference -- more sluggish and weak and just generally blah.

Monday, June 5, 2006

Drain, Drain, Go Away...

These drains are a bit of a drag. Each one is a barrel-shaped plastic container about the size of a drinking glass with a tube connected to it. The tubes disappear into holes on the side of my chest. I have to carry these things around with me everywhere I go. Sit down, set the drains on the floor next to me. Get up, pick up the drains and take them with me.

I found a clever way to carry them around at home -- I got S-shaped hooks and hooked them onto the side belt loops on my shorts and hung the drains from them. That left my hands free to do things. The few times that I’ve gone out, I put them into a shoulder bag and carried the bag very close to my side so it would cover up the bloody tubes. Of course, if someone tried to steal my bag, he’d be in for a big, bloody surprise!

I wonder what other women do with their drains? Do they just stay home while they’re in? Or do they have other clever ways of hiding them? If so, why don’t they share such tips with other women? This is the sort of thing I should put on my future breast cancer resource center Web site. If I ever get around to it...

Thursday, June 1, 2006

Post-surgery Check-up

Went to see the doctor for a post-op check-up. He looked at how much blood/fluid had collected in the drains since the operation (about 70 ml. on the right, 30 on the left). He said it’s not the amount of fluid that’s important, but the color and consistency. Like wine. Dark black and thick, BAD. Light pink and thin, GOOD. So we don’t want a Shiraz or Bordeaux; we’re going for a Zinfandel or Rose. When it turns a golden color (champagne!), he said the drains are ready to come out. He said to come back in two days.

People try to make you feel better about cancer by saying that we’re all dying and any one of us could be hit by a bus any day so you never know when you’re going to go. Getting hit by a bus and dying of cancer is a bad analogy. That bus is not following you around everywhere you go with the sole purpose of killing you. So I think people should just stop it with the bus.

Frankly, sometimes I think I’d rather be hit by a bus. At least I wouldn’t know what hit me. Cancer is more like a slow-moving vehicle that’s coming right at you and you have to keep trying to dodge it. A slow, boring, laborious death. Getting hit by a bus is at least interesting. “How did it happen? Did the bus run a light? Did she die instantly?” No such questions with cancer. When someone dies of cancer, people don’t ask for details. They just nod sadly and that’s that.