Severe

I looked at mum from the corner of my eyes, and she is sitting in her chair, her arm raised, her face seemingly in pain. She sits there, hour after hour... She gets up on the rare occasion to walk around a little bit, then she either sits down again or lies down. Every day is like this. Every single day...

I have to ask her, or otherwise she would not go out the house. "Too cold...", "It's raining..."... Of course it's too cold or raining here. It's the typical kind of weather in Taipei in the Winter and Spring months. But the more she does not go out, the less she wants to go out. And the less she moves, the more her bones will deteriorate, and the slower she will regain her health. 

I cannot understand... I simply, simply cannot understand how it is to be ill. I cannot understand what it feels like to vomit, to feel sick, to be mentally so weighed down by cancer. But it pains me.

It pains me so greatly to see mum like this...
 As if she has given up, as if she is just waiting to die...
She cannot eat. She eats half a bowl here, a mouthful there. And more often than not, it all comes out.

I am boiling in frustration. My head is spinning with a sense of hopelessness, anger, and rage. What is wrong... what am I doing wrong? Why is mum so unwell after all that I try to do for her? She was getting better before, but now with me around she seems to be getting steadily worse. I am only trying my best... Perhaps I am not trying hard enough...








Today, when I dragged her out to dinner, we walked in silence a bit. Then at one pint she said: "I should have not done CyberKnife. I've become so weak from the surgery, and the [CyberKnife] treatment made me even worse. I have no strength left..."

Immediately I felt so terribly guilty. Who was it who pushed for the treatment? Who told mum it would only be a few days? Who has to bear the side-effects, the severe fatigue, the nausea and listlessness afterwards? It's not me. I just signed the agreement to proceed. But she, she has to bear the consequences... Where did I get the authority over her health? Where did I get the say over her life or death? Why are people looking to me to decide what is best for her? Why do my grandma (mum's (step)mother), my aunt (mum's brother's wife), and my uncles (mum's brothers) all tell me that I should stick around and decide treatment for her?  I don't want to shoulder all these responsibilities. I can hardly decide my own life, let alone that of my mother's...

I feel so terribly, terribly guilty. Her pain, her suffering. Is it my doing? I only meant well... I only hoped that if she did the CyberKnife treatment soon, the tumour would not grow to be too large to handle. No, mum is not blaming me for anything. She was just saying how tired she feels, and how much she feels she should have rested more before proceeding with treatment.

Treatment Day Four

The fourth and final day of treatment. Or so I hope.

We again took the taxi to the hospital, and mere minutes after getting off, I could see mum was unwell again. Her mouth puffed, and her lips sealed tightly. I instinctively took out a plastic bag from my backpack and gave it to her quickly. Plastic bags have become a "must-carry" whenever we go anywhere now. As expected, she vomited. Everything from breakfast came out again. I patted her back. She coughed and choked. I swallowed my tears.

 I accompanied her inside the operating room, and helped her onto the operating table. She closed her eyes and grimaced in pain. "I know, I know... But this is the last treatment," I said to her, grabbing her hand. The very last treatment I do hope. The very last treatment...

 The radiologist kindly asked me to leave the room. I paced around outside, watched the crowd, imagined mum inside. A guy next to me was watching a comedy on his hand-held device, and his laughter filled the corridor. Later, he got up and picked up who I believe is his son. His son who was in a vegetative state. The man gently grabbed his son and placed him in a wheelchair. I watched them disappear into the crowd. The echo of the man's laughter remained in the corridor, remained in my head...

 Whirring sounds and a low siren constantly sounded. The technician operating the machine again went in and out of the operating room to adjust mum's position and operating table. Every time he passed me, he would gesture to me to sit and say, "Not yet. It's not finished yet." I would weakly smile at him. I would thank him. Then about forty minutes or so after mum went in, the red light turned off, and the brown door slowly, slowly opened.The technician walked by and smiled at me. "Please, you can go in now..."

 I walked inside, and saw the gigantic machine, motionless. With its metallic arm, its impressive-looking head, it stood there, looking proud and imposing. Mum lay there, also motionless. The blue mould that was made of her body the week before made sure that she lies as still as possible. Mum's eyes were closed, and only when I called out "Mama..." did she open her tired eyes.

"Is it over?"

"It is over." Dear god, please let this be over. Please. Please... "How are you feeling? Did you rest?" I asked. Streaks of infra-red, used to pinpoint and target the coordinates of the tumour, shone on her forehead and upper body.

The technician, a kind, gentle man, helped mum up, and gave her a pat on her back. Mum looked tired, so very, very tired. I held her hand and helped her down from the operating table. She wobbled a little and slowly we walked out the room.

"Thank you," I said, following mum. As much as I am thankful to the gentle man for his patience and hard work throughout these last four days of treatment, in a way I do not wish to see him or the CyberKnife, or any other medical equipment, again. An MRI scan was planned for an hour from then.

Mum felt a little better after a little lunch. Just some congee, a few vegetables and vegetarian steak, but at least she held it down in her stomach, which meant she absorbed the nutrients necessary for her to regain her health, regain her strength.

"The [glutamine] really helps," she said, "My throat is not as sore as before."

I joked: "Well you've had lots of experience, and now know what works and what does not. You should write a blog."

Mum smiled.

Treatment Day Two

The siren constantly hummed, a low and annoying echo. The radiologists went in and out of the room in a hurry, numerous times, as if something seems to be going wrong.

From a distance, I watched her lie in that room, mere metres away from me. Motionless, under a green hospital-issue blanket, I somehow cannot shake away the image of corpse lying in the morgue.

Mum was in the "operation room" for over an hour and a half. The technician explained later because of the metallic artificial spinal column installed after the surgery, the computer automatically shut down many times for fear of hitting the artificial spine. The gamma ray will deflect if it hits metallic objects, and the computer, with help of X-rays and infra-red scanners, is smart enough to detect if there are obstructions in the way of the targeted area. So the technician had to go in various times to adjust mum's position and the operation table to ensure as accurate a procedure as possible.

Mum looked visibly weak after she came out. She had to lie there in a mould that was made of her body earlier and keep perfectly still while the machine twists and turns above her head, while red beams scan the length of her body to continually calibrate the target coordinates.

But the day at the hospital was not over yet, for had another appointment with a new doctor to see if is anything wrong with her bowels. And immediately after that and X-Ray was taken.

By the time we got home it was already past three in the afternoon...

Treatment Day One

Another cold, cold rainy day in Taipei. Together we rode the taxi to the hospital in the south of the city. The meter clocked over sixteen kilometers, and we were still within the city boundaries. We were a little late when we arrived, but the radiation technician kindly smiled and told us not to hurry.
 

The noise of a siren behind the closed thick metallic door warns people not to get close. Radiation in progress, treatment in progress.

The tumour, as suspected, is indeed difficult to locate and treat. From the initial diagnosis of two days of treatment three weeks ago, it's now doubled to four. Which means, except for Sunday, we will have to be at the hospital almost every day this week.

At the end of the robotic arm is a giant pod-like structure, to which a highly focused laser lens is attached at the end. It is through this that the burst of radiation is emitted at key locations to kill off the tumour. The robotic arm moves around the patient, and with the aid of x-rays and infra-red scans which are constantly calculated to ensure the laser is targeted at the precise location of the tumour as previously determined by various scans that were conducted prior to the treatment.



I watched from a work station outside the operation room. On a screen, I could see four cameras displaying the room from various angles, each with mum's body on the "operating table" in view. The robotic arm moved around mum, slowly, and every few minutes or so a red light would come on indicating "BEAM ON", followed by a green light indicating "BEAM OFF". A myriad of numbers would flash across one of the screens, which I presume is the computer calibrating the location of the tumour to be targeted. Earlier, the technician explained that the device is actually derived from the automated assembly line of automobiles, which requires very precise instruments to ensure the metallic parts of a car are well welded together. In this case, the robotic arm ensures that the undesirable parts of the body, the tumour thus, can be 'zapped' away using intense bursts of gamma radiation. The technology uses 6-D (as opposed to the convention 3-D) imagining, so that the computer can 'see' from all possible conceivable angles and send the robotic arm to within an millimeters of the intended location.


He led us into the chamber, and upon turning a corner I saw the massive device which to this moment I had only seen in pictures and simulations. It was more futuristic than I imagined it, a gigantic robotic arm with a laser attached to the end of the arm. There were  with the capability of turning at any angle.

I watched the four little screens carefully. Other than the robotic arm moving in very close to mum's body, there was nothing happening. "Does it hurt?

"No, not a bit. She doesn't feel a thing," the technician explained, "Most patients get very bored and fall asleep." If the patient's body and target area is aligned well with the scanned image stored in the computer (to ensure accuracy in the laser targeting during the treatment), then the procedure should not take more than an hour, or an hour and a half at the most.

I sat outside the 'operating room' next to brother and waited. He took out his phone and began playing a game, while I got up and paced around a bit, occasionally peering my behind the technician to look a the various displays of the operating room and of mum's high-precision scan. It sounded and looked like something out of some sci-fi series, but it was very real, and it could very well be a life safer...

There was a moment, I felt like crying... At one point the technician sympathetically said: "I can understand your anxiety. My dad also had cancer. Hang on there..."
So much waiting, and the treatment has finally begun. How effective will it really be? Will it really clear away all traces of tumour in mum's spine? The doctor explained that scans the day before revealed two concentrations of cancerous cells, one in the lower spine, somewhere behind the intestines, and another higher up, somewhere behind the lungs and immediately below where an artificial spinal column was installed after the surgery. Other than that, there are no other traces, as far as they can tell, or at least, as far as the instruments can determine. However advanced and high-tech the technology is, there are limitations, for it cannot detect cancerous cells smaller than 1.25mm. If there are other traces, then further follow-up scans will reveal them...

Mum left the operating room within forty minutes, a speed which surprised both my brother and I that made us wonder whether something went wrong. We went inside the 'operating room' to greet mum, who lay on the 'operating table' and smiled at us as we entered. "Did you bring [my grandson]?" she asked, "I heard a baby crying outsie!" It was actually another baby in the corridor, perhaps not much older than my nephew. But I could tell, mum wanted to see her grandson, and I can only imagine it's because he brings her so much joy.

I looked at the CyberKnife machine from close up. Quietly I thanked it, even though we do not yet know how effective it is. It seemed silly, was it not, to thank a cold inanimate machine. But as I left the room, I imagined the dozens, hundreds of people who have laid there on the same 'operating table' and who have looked at as the machine quietly slid over their bodies and one by one killed off unwanted tumours. And now my own mother is one of these people, whose health and life depends on such a sophisticated piece of technology, who hope depends on the technicians and doctors who operate the machine from the room next door...

Treatment one ended. Three more to go.

Treatment or not?

...so scared... So very scared and crying for no particular reason I can think of.

A new treatment may be about to begin today, mum's last hope as far as the spine is concerned.
But she does not want to go. She has been sleeping poorly, and threw up again this morning after the breakfast I made...

She is physically weak, and I think mentally dreading the treatment...

Warrant

Why did it feel like i was signing away a warrant...? A death warrant was what came to my mind when I put down the pen. Perhaps it's a "life" warrant, for it's supposed to remove remaining traces of mum's cancer on the spine. But it felt so heavy, so very burdensome, as if the responsibility, the outcome is all resting on my shoulders. Just one little push, and I could have burst out in tears at the doctor's office.

The entire morning I rang back and forth between home and hospitals. I needed to deliver the latest whole-body bone scan results to the new doctor at the hospital we were referred to. Out of curiosity, I went home first to take a look at the images. And lucky I did that, because the lady who copied the images gave me those from last year, so I had to go back to the hospital where mum is still staying and get the correct images. Plus, I had to make sure mum has some thing substantial and nutritious to eat, for she has been complaining of terrible fatigue and lack of energy. The surgery had really taken away much of her "energy", or chi, as we say here. And a person lacking. "chi" is like a deflated tire... Tired, drained, utterly listless and mentally and physically eroded...

I rushed to meet the doctor's assistant at the hospital mum is about to be transferred to. A long journey across the entire city of Taipei on the bus and metro... Outside, the sky was so gratuitous, so heavy with rain ad fog, and I found myself having to lift myself up and tell myself that the sun is just behind the clouds...

The doctor's assistant was extremely friendly and patiently explained to me the entire procedure. She said it could all be arranged by tomorrow, and treatment could all be completed by the Lunar New Year, which is coming Sunday (With all the rushing around and time at the hospital, the festivities have escaped me, and I am only reminded of it by the changing of shop windows and signs and red lanterns...). But at mum's request, I rescheduled the procedure to be after the New Year, for she is already so weak and energyless.

So on the 30th of January a more precise scan will be made of the two (or more?) tumours on the spine. The next two days are planned for treatment, and on the 4th of February, a post-procedure consultation with the neurosurgeon is planned. I was again taken aback by the efficiency and speed of the entire process.

The doctor's assistant kindly explained to me the procedure, side-effects, and costs. Over two hundred thousand New Taiwan Dollars (approx. CAD 7000), as this form of radiotherapy is very advanced, and still undergoing clinical testing, so is not covered by the national health insurance.
I gasped quietly when the costs were revealed, for earlier an estimate (by her current physician) was half that amount... And I was specifically told also that as the cancer has metastasised, the next treatment can only contain, not fully eradicate mum's cancer. As precise and effective the treatment is, it can only detect and destroy tumour cells over 1.25mm. Anything smaller will go unnoticed, thus there remains the possibility of not a completely "clean" treatment.

I listened the to list of side-effects... Nausea, vomiting, swelling of the oesophagus, lung fibrosis, possible bronchitis, diahrea, localised damage to the intestines... As new and advanced as the treatment is, it is still a form, albeit much improved form that is much less destructive of surrounding organs and cells, of radiotherapy. The list of side-effects may be daunting, but the doctor's assistant said there was a duty to tell me all that so we are aware of the risks.

But what price tag can you put on health? What risks can possibly outweigh the possibility of living for another day with less pain, with more hope? Mum may never get better, may never completely be free from cancer, but for now, the new treatment is the best that is on offer and best way to deal with the spreading on her spine.

We cannot give up now. Not after we have come so far...

I signed the documents, and found myself trembling as I did.

My name was on the form...

I am my mum's representative. In a way, I somehow found myself determining mum's health and illness, life and death. Mum could not be there, for she is hospitalised. Brother could not be there, because he's gone home to spend time at the mother-in-law's.

And I am the only one who has to shoulder all this and decide right there, right then...

" I understand the cyberknife treatment, its necessity, its procedure, its risks and success rate.

I understand alternative treatments and their risks.

I understand the sideeffects and possible risks of the cyberknife treatment.

I have been able to ask questions and enquire dieter about the cyberknife treatment.

I understand the cyberknife treatment is currently the best option, but it cannot guarantee an improvement in the condition.

I agree to proceed with the cyberknife treatment.

Signed in agreement with the above,

XXXXXX , son of the patient,
Taipei,
2012/1/16 at 14.26.