The Breath of the Death I

(My friend Laelia passed away on 5/31/2017. She wrote diaries before she died. This is the original English version of 死亡日记之虔诚末日. Every time I read it, it broke my heart that I could not imagine how hopeless and strong she was!)

2016-03-03 Cloudy

February 4, I was diagnosed for liver cancer after altar sound, MRI and biopsy. After several specialist visits, I was told surgery was not an option at the moment.

March 2, I started my first chemotherapy.

Lab at 7:30am; doctor appointment at 8:00am; chemo after that. Sounded an easy day. However, life always full of surprises.

I could not get the IV in my vein at the lab because my vein was so tiny. So after being blue in my right arm, I got an extra poke on my left arm just to take the test blood done.

Went to the doctor, the first thing she said to me was: Are you by yourself?

Am I too tough?

She was very concerned that I haven’t told my parents about this yet especially knowing I was the only child. I could feel that this is a serious matter. Strange, without Josh’s presence, some questions seemed very easy to slick out. I directly ask her, do I have five years left? She said less.

I felt cold for 2 seconds; the cold started from my heel then went straight to my head.

I asked if it is worthy to still doing the treatment, because I definitely did not want to end up in the hospital. I would like to go somewhere. She told me if I did go somewhere for a vacation, I could still get my treatment at the local hospital wherever I travel to. That sounded a good plan.

Then Nurse Stacey came and showed me to the chemo room. I got my third poke for my IV, still without luck. It hurt so much, I even cried. Welcome to Wisconsin, the land full of big and tall. For the first time ever, I received an ultrasound guided IV input. And finally succeeded this time.

IV was cold and then the liquid got into my body, my whole arm felt like a dance floor that hundreds of needles were having a hot party there.

3 hours of treatment. I read, watched some movie with my phone, day dreamed, prayed. I also thought about how to tell my parents. This, however, would be the most difficult part.

To my surprise, I got a wonderful gift from “Thirty One Gifts”. It did cheer me up a lot. The hand-written cards inside made me felt strong. Thank you!

Josh went to teach night class, I had my simple dinner by myself. Tomatoes fry with eggs and white rice. One of the most popular dishes in Chinese cuisine. Colorful and tasty.

Not so much energy left after the dinner, so I decided to watch a movie on my computer. I chose “The Bucket List”. After five minutes after the movie started, I felt that I would like to move my laptop to the couch instead just sitting by the desk to be more comfortable. With one hand holding the laptop, another hand holding my tea cup, I lost my balance! How could I lose my balance! I could hold 2 hot plates in one hand and still perfectly serving my customer, and carry a tray with 10 plates in!

Laptop fell on the floor, and of course, my tea was on my laptop as well. Quickly took out the battery, tried it up, and dared not touch it anymore. Just let it dry. Well, for a bright side, maybe it still not my time for a bucket list yet. Hmmmm.

Then I remembered when I was cooking my dinner earlier, I could not even throw the egg shells into the garbage can. I felt funny. I laughed at Josh several days ago, that when he was dancing, he was always “uncoordinated”.

I guess, now I AM the uncoordinated one. : )

2016-03-05 Cloudy

Last night was the best sleeping night after my first treatment. I am so glad that I finally get some energy back.

There is one medicine that causing me not sleeping in the nights. For two nights, I was awake, staring at the bedroom ceiling, for hours and hours. And right before sun rise, fell back to sleep again. Waking up around 10 or 11 in the morning, I was exhausted and extremely hungry and thirsty.

Heated up some milk, peeled one banana, later some coffee. After all these movements, I was already tired. Laying in the couch, watching cars come and go; birds flying around; squirrels jumping around in our yard; I spent my first two days in this way.

Waited Josh came home making dinner. He is not a good cook but a great dish washer. So every night, I sit in the kitchen, telling him what to do, and he makes the movements. Every time before we started, he will always announce that: Today’s cooking with Laelia, we are going to make such and such. That just makes me laugh.

So far, he managed: red sauce spaghetti, pork fry carrots, light cooked broccoli, pan fry burger.

Well, at least I will not be starved anymore.

3-8-2016

My laptop is back today. That makes me happy. :)

2016-3-1 Snow

End of January, the right side of my body hurt again, just like it was in last September. I called for a doctor appointment this time instead of going to the emergency like I did in last September.

Thought about there might be lab tests, I fasted since 10 in the morning when I visited the doctor on January 28th. No surprises, lab for blood, and later for ultra sound. It was a small clinic, so we need to drive to a bigger hospital for my ultrasound. I was told the appointment was 5pm and 4 hours ahead not eating nor drinking.

Arrived at 5, waited, waited and waited. I was so hungry and thirsty and exhausted. J was nothing better, he had to work from very early in the morning. Every time he asked the reception, was told still not sure. The waiting time from 30minutes, to an hour, and then to 2 hours. At around 8, after we were told not sure again, I could not stand anymore. The hunger mixed with impatience, and the anger of being fooling around made me explode. I shouted at the receptionist: can I just pay for the emergency and get my ultra sound done? I haven’t been eating nor drinking since 10 in the morning!

Right at that time, there was suddenly an open. That made me wonder if I should have shouted long long time ago.

Did my ultra sound, finished around 8:30, felt lazy to cook anything so we went to Denny’s for dinner.

It seems that we always went to that Denny’s for dinner when we had some trouble and felt too lazy to cook. Me and J, we look at each other, I was still in pain, and he seed worried. There was an old man sitting at the next table, alone. I whispered, when I died one day, you will be like him sitting alone having dinner in a restaurant by yourself. J replied, why you have to die? I said, everyone dies. Just about the time.

At that moment, I thought it was just a joke. And death just so far away from us.

After dinner, I was cleaning the kitchen while J was doing his homework for his master’s degree, my best friend GG asked me how was the result. I told her it was nothing serious, otherwise the doctor would have told me by then. That was around 9:30.

Just after 10 minutes later, doctor called me. There were several lesion found in my ultra sound and asked me to be extremely careful not to fall. And she would call me for more details the next day.

Lesion?

I googled: le•sion a region in an organ or tissue that has suffered damage through injury or disease, such as a wound, ulcer, abscess, tumor, etc.

Tumor? No. Impossible! I am so young and I have been eating healthy.

I need to sleep early that night because I need to work at 5 am the next morning.

I was a banquet staff in a hotel in downtown. It was an easy job and it brought me the best payment of all the jobs I had had in America. Never worked as a waitress before, however, I handled the job very well. All you need just smiling, clean, fast, balance and good memory. I even got my second job after 2 weeks working there, because one of my team leader was a manager of another catering company.

After my 5am shift, I was in the changing room waiting for my next shift. It would be an 5 hour waiting. I was about to go to the library. My phone ringed. It was doctor Hand.

She told me clearly, that I have cancer. And I need to do a MRI and a biopsy to confirm.

My heart stopped for a few second. And I felt cold. So cold.

I wished I had tumor.

I went to the manager’s office asking day off. It was the morning on January 29 th. Friday.

And I have not worked since then.

I dreamed about working there again last night though. Took the employee elevator, from F6 to B1, after the event was done, first went to the changing room and then the break room for lunch. Fried fish. I took a bite, it was so crispy! Strange, I never liked fish fry before. How could I enjoy so much in my dream?!

One month has passed. I will have my first chemotherapy tomorrow. Basically, I am peaceful. Uncertain, is for sure. Things need to get done, then just peacefully accept those can not be changed. Worrying is useless.

Hair loss, weight loss, being ugly and weak, none of these seems matter. Being alive and enjoy life is the most important to me.

2016-03-09 Sunny

I missed our work party last Sunday. Because I had fever.

Fever can be dangerous during a chemo treatment period, because the patient’s immune system is not as function as a normal person. We were worried.

The whole weekend, I was in bed, slept almost all day. Monday whole afternoon. Tuesday not so active.

After several tough days, I felt much better today. Maybe because the warm sunshine and the happy singing birds.

I took a walk around our neighborhood. I went by our first rental apartment in Madison. Looking at the window, thinking about the time when we lived there, I smiled.

There is love, there is way.

3-17-2016

Laelia: It is St Patrick Day today. Too bad can not drink anymore.

Josh: It's like you are drinking on any other St Patrick days anyway. I've know you since 2011, never seen you celebrate this day. And you don't even like the color green.

Laelia: Well, let's have some meatballs then, celebrate the color of red.

2016-04-03 Sunny

It’s been 2 months since I found out I was sick. Time flies before you even noticed.

After 2 sections of treatment, my body seems finally found a balance. Still fatigue, however, the pain is almost gone. No sickness either. And I am back to my chief position now! No more Josh cooking!

5-27-2016 Sunny and Rain

It’s been almost 2 months since my last writing. My life has been quite smooth with a routine.

Get up around 7:30, breakfast and coffee, talk with Parents for awhile, work in the garden or the back yard projects, then a little bit Candy Crush (:P) and prepare lunch. Sometimes take a nap, but most my afternoon I will take a walk if it is a nice day.

Fruits in the early afternoon, home organizing or cleaning, read, get ready for dinner.

2 weeks ago, I had my CT scan, it shows that my tumor is smaller and things are not getting worse. It will be still a long term battle, however, right now, I do not feel any pain any more.

Thank you all my friends for praying for me! I feel so blessed!

Tomorrow, we will be on our 5-day road trip: St. Louis – Memphis – Nashville – Frankfort - Indianapolis. Very excited about it!

6-22-2016 Gloomy

Arrived at 7:40 by the hospital and still waiting to get my treatment. How it delayed so much? 1 hour waiting for ultrasound IV team to get the IV in, the rest of time just wait for the lab results. Feel like crying.

After couple of months regularly visiting the chemo department I do know some familiar faces.

There is a couple in their 60s, the husband usually push her wheelchair around and get the stuff she wants for her. I can see Josh and I like that if one day I get really sick. However I wish that day not happen for a long time. There's still a wonderful life out there waiting for us.

Stay strong.

Another couple just came by, I met them at the lab this morning. The lady smiled at me and said, look, this girl is waiting for you here. That just made the whole waiting feeling not that bad.

Need to be optimistic especially when life is not easy.

I often think of this paragraph from the Bible.

Matthew 6:25-34 NIV

25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?

Stay calm.

June 22 2016

At last I cried. The treatment hurts. Good thing that I closed my curtain. =_=

2016/7/28 Cloudy

I had another CT scan Monday, got my result yesterday. Stable is the word to describe.

Then I started my fifth treatment yesterday. Each treatment including two times.

After four treatments, my veins started becoming hard, needles are difficult to get through. By the first time of my third treatment, I started to use IV team, who work with ultrasound so that they are able to see the vein on the screen, and they numb you so they can poke harder and deeper.

I’ve never heard about that in China, it is sounds so unbelievable. Why they have to use an ultrasound to put an IV in a patient’s vein? I can see all my veins clearly in both of my arms! For them, maybe it is hard to believe that a regular Chinese nurse usually use the veins in the back of patients’ hands.

By the second time of my third treatment. The IV lady tried two times on my forearms, one time each side. Failed. Then she had to put on in my upper arm. She said, I was not sure to me or to herself, “there is nowhere I can put an IV in”. I started to cry. I did not even know why. And could not even stop.

An old lady reached out her hand to me. I said thank you but no.

I do not like to hold stranger’s hands. Especially I was holding my tissue paper which full of my tears.

Finally, the IV lady put one in my upper arm, right next to the place that my pickline used to be. And she told me that, you better get a port.

Ah, the port! There is another two-pages-story but not for today.

I told about the port with my doctor later when I visited her. Her nurse Stacy checked my arm and said, ”I believe I can put an IV in your vein, next time instead of going to the lab just come to me.”

So the next time I came to her instead of the lab. She set up everything on her desk, using a hotpad to enlarge my vein, cleaned, poked, and in. No machine, no numbing medicine and just one shut, right in my forearm. I just don’t understand why all the other nurses in the lab could not neither the IV team. Isn’t this their everyday job?

Maybe that’s why, they are still working in a lab or in an IV team, and Stacy is in a management position.

Since then Stacy became my IV lady before every treatment.

My doctor talked about my case in a conference. Maybe the doctors think my case is worth study. So yesterday someone from the research group asked me if I would like to signed up as a volunteer by allowing the research group using my tumor tissue and blood samples. I agreed. However, I was not brave enough allowing taking additional Biopsy tissue.

During a Biopsy procedure, the patient is not put into a full sleep. So the sound that the needle being put in and taken out are heard so clear. Puuuzzz. Puuuzzz.

By thinking about things taking out of my body, I felt terrified. So I cried. Both times. One nurse recognized me when I had my pickline putting in. He asked me, “ You are not going to cry this time, are you?”

I hope by researching my case can help other people benefit in the future.

2016/8/23 Sunny

My Port

I had my first port by the second week when I started my chemotherapy. It was not a pleasant memory.

I had to fast since the night before because I would be put into sleep during the surgery. Not drinking or eating made my mood really unstable. Then my surgery was 2 hours behind schedule. I got a rash on my face and I called the nurse. An old woman came – I don’t even know if she was a real nurse or maybe just a temp – I told her about my situation, she just grabbed my cover off me and said, “You have a rash because you cover too much.”

I was mad. I shouted at her, “You do not touch me or my cover! Now you should measure my temperature and see if I have fever. ” I almost added “Just do your job”, but I did not. The five-years-ago-me would.

Seriously? A person supposed to be a nurse position just came into a patient’s room and grabbed her cover off? What if I am not properly dressed?

Finally, the surgeon came, female, around 30ish. Blablabla a lot about the port asked me to sign something, then someone pushed me into the operating room. Then another surgeon came, I asked since I was right handed, if it was possible to put my port in my left side. “You know, if you put it in your left side, the port will have higher chance to pump out.” Said the second surgeon, a man between 40-50.

Then I was out.

When I woke up, they were still putting the port. All I heard was, the man told the woman, “you should put it this way, and do it that way…” I started to feel scared. Was I a guinea pig?!

After I met Josh in the chemo room, I realized the two surgeons spent over 2 hours to get it done, and it usually cost only 1 hour. That made me even worried. Also, because of all the delays, I was too late for my chemotherapy and I had to get back to the hospital the next day.

I made an early appointment for my chemotherapy. When I arrived at the hospital, my nurse found out my port area was all dark purple. I took a photo before I left home and it was all fine. And to avoid seatbelt, I sat in the back seat. So I was bought to another room, the 2 dumb surgeon came. The woman said nothing, and the man was so confidently, “Yeah, you are allergic to the plastic. Maybe before you did not, now you do.” I had to show him the photo I took that morning only to make him speechless. My oncology thought I had an infect but she also thought it is safe for me to use the port for chemo and the infect would go away soon.

And I felt like I broke my arm for like 10 days.

So I kept my port, for another 2 or 3 weeks, until one day I realized some orange liquid came out. I called the hospital, got checked the same afternoon. This time I met another surgeon -- I had to keep on thinking that maybe those 2 were just avoiding to meet me -- he told me that the port would pump out soon. So he would need to remove it as soon as possible. I had lunch already so he asked me if I would like to come back the next day or just do a half sleep surgery. I chose the second one.

Called Josh for a pick up. Then I went onto the desk.

Half sleep, in a quiet room, meant, I could hear the needle, so close, right next to my ear. Sounds like someone scraping a balloon. And you knew it was not a balloon, it was your skin. Not too much pain, less than a bee stung, I survived.

That was my first port. Placed, removed, left a scar on my chest. That made a lady confused I met at Niagara falls. She saw my soldier hair and my port scar, then she came a hold my hands excitedly asked if I was a survivor. I said no. Then she wished me good luck. Did not talk to much with her because my parents were around, did not want to get too emotional.

After the port, I had a pickline. It is an IV like tube running through the arm. Had it for a month, then took it out, because the hot weather made my skin so itching.

Last Wednesday, another port was placed on my left chest. I kind of waited until the last minute to place another port, and last week seemed it was the time, for, I had no place to put any IV into my arm. Same surgeon who removed my port put it in. This time, I feel much better. Really, doctor matters a lot.

Tomorrow, on my 34th birthday, I will have another treatment. That will be my last treatment of the 6th cycle. Then I will have a month break. After that, another scan.

I do not know how the future would be, however, I will not stop fighting.

2016/10/8 Sunny

Out of breath after a hot shower. Had to sit down for awhile. Maybe I should have not taken such a long shower but it was so warm though.

Parents left this morning and J is out for a conference in Milwaukee. I am all alone at home. After 5 and half months stayed with parents, the first time I feel so quiet in the house. I will miss them for sure. But let me enjoy the quiet moment for a little while.

2016/10/26 Rainy

After 3 weeks of radiation mapping, I had my radiation yesterday. According to the doctor, everything went well. They also told me for the next couple of weeks I will be feeling super tired. – Well, I’ve already felt this way. All I want to do right now is sleeping.

I did not realized the medications today are so advanced until I heard about this treatment. First, doctor will operate a body mapping to see how the blood goes, if necessary, some vein will be closed. It is like they design a travel path for the radiation medicine. Then, after few weeks of recovery, the real radiation treatment will begin.

The operation went smooth in the beginning, I was stable, half sleeping. Doctor and nurses were doing their job. But suddenly, I smelt something really strange, then I started to cough, really hard. Could not breath. I opened my eyes, I saw bright lights all over me. Wait! I had the same feeling when I was a kid almost drawn in the river. I told myself, “I do not want to die like this.” Then I started to breath rapidly, I also told the nurse to give me another pillow, and took off my oxygen pipe – which made me feeling very uncomfortable. After that I fell a sleep again.

Did not know how long it passed, I saw another doctor in the room, he was defiantly not there in the beginning. That made me worried. Then I fell back to sleep again.

What an operation!

After I was sent back to the recovery room, nurse told me they were worried because I cough badly and had red chick, so they gave me some sleeping medicine. Ah! No wonder I could not even woke up!

Slept from 1pm to 9pm then 11pm till 8am the next morning, went back to the hospital had a check up. Seems everything went well. Slept again from 1pm till 5pm today. Soon I will be back to sleep again. Sleeping is the best recovery method I believe.

12-04-2016 Snow

We got the first snow of this year today. Now I feel I am really in Wisconsin.

Perfect time for a hotpot at home, that will be our dinner later. Me and Josh will sit by the oven, watching the spicy soup boiling and put our food into the pot, wait for several minutes until it is fully cooked. Taking it out, dip into the sauce bowl and enjoy. It can be meat like beef, lamb, pork, fish. It can also be all kinds of vegetables. My favorite vegetable is Chinese cabbage, put it into the pot let it boil for a long time until it is really soft.

This hotpot dinner will be also the last nice dinner for me in a while. Tomorrow, I will have my second radiation in the morning. From the previous experience, I will be sleeping a lot because my body will be trying to recover. My body seems smart enough to know that sleep is the best way to get my energy back.

I had my first radiation on 10/25, and I did not even get out of the house for almost 3 weeks. And had fever when I got back for my first time out after 3 weeks just for a simple groceries shopping.

I hope I can recover faster this time. Because Christmas is on the way!

Special thanks to Jill and Brandon, the socks you send to me are so comfortable!