Rainbow After Rain

Meeting an Old Friend

It’s so important to keep the connections with people who you know for a long time.  I’m a big believer in retaining the people who I have shared a lot of with. It’s of tremendous value to me, always makes feel conscious of who I was and who I am.  I also enjoy sharing myself and my growth with them.  H. P from Virginia visited SF this week for a conference. Last time I saw him was at my college graduation. It’s been a while. So as we attempted to describe the past two years of our lives, the nature of our conversation wasn’t about the facts and details. It’s refreshing to suddenly being forced zoom out of my current life,  seeing it in a bigger picture.  I walked him through the important threads that weaved through my past two years since I moved to California, the happiness, the hardship, challenges, and future hopes. Yeah, that means many cups of tea and boxes of Kleenex.

I later asked if I have changed. He said no.

I laughed: “Yeah, still goofy as usual. But I feel I’ve grown up a lot. A lot…”  I went quiet.

He said: “You enjoy your life even though things are hard”. I felt grateful hearing that from him.

Even though I didn’t tell him that for the past few months, I trying was to win the cancer war. Things were hard for me, indeed. He didn’t know that I had cancer…I kept it under the cover with an ease on my face, as if the hard times were just about some boy problem or frustration at work…I did survive the cancer fight, no, not only survived it. I haven’t changed the way I had lived before. Maybe only with more motivation and dedication to the things I believe in. I’m very proud of that part of myself…

My friends are constantly giving me kind words and great insights that help me to enrich my own. I have moments of epiphanies, joined by tears of joy, and heart chill. I was thinking to myself. I want to live with such connections to the world forever!

Tomorrow I’m hosting a dinner celebration with friends at Butterfly. My thoughts right now take flight, light and free, like a butterfly .

Last Day of Chemo!

Today is the day that I’ve looking forward to for a long time. After negotiating with my team of oncologists, they asked me to this extra week of the fourth cycle as the safest solution to ensure that I don’t ever see the cancer coming back again. The germ cell cancer doesn’t usually return later in life. My oncologist told me if it doesn’t return within 2 years, I’m most likely to won’t see it again. That means a cure! I hope today’s session can get all last bits of the cancer cells…

It’s the final day, also a new beginning. I feel excited.

The Patient-Doctor Relationship

Today is the last day of my third cycle. It’s been 9 weeks since I started chemo. I need to congratulate myself of coming a long way.  I didn’t sit around, feeling miserable. In my chemo session, I told my nurse D, that I wish I could be running with IV on. I find a lot of joy. I threw myself into things I enjoy – art and crafts, connected with friends and my family, and developed new interest in theater and acting…Now my AFP is within the normal level. Remission is within reach. Just as I thought I was almost done with the chemo this week, my oncologist poured a big bucket of cold water on me last week. It’s only the third time to meet her. Once after each cycle. I do find it hard to communicate with her…because each time I attempted to contact her, she’s always in the OR. Although she’s like an authority figure in the gyn oncology field, I don’t feel I get enough attention or direct communication with her. So when she told me that she strongly felt I need a 4th cycle. Because at the very beginning, the plan was to have a full cycle after AFP becomes negative. The end of my 2nd cycle, it is already in the normal range. So according to the plan, I only need three cycles – that just ended today. But she suddenly she changed her plan and told me to do one more cycle, b/c of her intuition that 3 cycles is cutting corners…I felt betrayed and being forced…Out of primal instinct, I, of course, feel reluctant to having more chemo…

I strongly reacted to her decision and change of plan…my body trembled with scare.

I already have some hearing loss. My finger nails are starting to come off.  Yes, they will grow back soon. I just started to accept the loss of my hair, it’s not an easy process to go through physically and emotionally…What would happen to me after another cycle of chemo? Why they can’t develop more effective drugs that just kill the cancer cells?

Okay…okay…no use complaining.

The Dr. and I had a long discussion. We agreed to make decisions together by this week based on test results and CT scan.  I haven’t heard from her yet.

I later consulted a doctor friend, who patiently explained his POV from the doctor’s side. I got a better understanding of the intricate relationship between patient and doctor. I understand where she was coming from – I am falling into her statistics game. But what she can’t control or predict is my body…oncology is an trial and error art as it is a science…Nobody is sure whether the extra round would kill ALL the cancer cells or not. Does it do more harm than good to my body, from the permanent damages such as lungs, hearing and neuropathy.  So as much as it’s hard statistics and science of medicine, it’s also experience and intuition.

I admire the mental strength to be an oncologist, but I wish I never see her again after this is all over. Maybe as a friend, but not as my doctor!

I have been a chicken, not voicing my thoughts to my doctor clear enough. I have so many questions yet to be answered…The anxiety is eating me up like thousands of ants eating my head…I need to be more aggressive in terms of getting answers from my doctor…at least knowing why she changed her plan…at least, to gain a peace of mind, if I do end up doing another round.

First thing in the morning tomorrow, I will call my oncologist and see if I can meet her in person.

I listed some questions to ask the doctor tomorrow: Permanent side effects? What are the odds that the 4th round would help me? Whether should continue Lupron after chemo?

Other things to think about  30 Pros & 30 Cons…

The Special Christmas Gift

I want to share this wonderful news with you all. I’ve received the most wonderful Christmas present I’ve ever received. My nurse D called yesterday morning and told me that my most recent AFP (the marker for the cancer) went down from 71 to 8 after my second cycle. The normal range is 0-15. According to my oncologist, I will only need one more cycle to end the whole treatment. I’ll be in remission. I feel like being given a second life. I’m really tired now…I will finish the blog tomorrow morning, when I have more energy. I have so much to joy and thoughts to share about the past few days, weeks or months…Brb. Good night, everyone, sweet dreams!

Side Effects, Old Friends and Girls Night In

I haven’t been updating my blog for a while. There are some updates. My AFP has been continuously dropping from 1300 before chemo to 71 after the first cycle. I’m in the middle of my second cycle now. According to my oncologist, I will need one more cycle of treatment after the AFP reaches the normal range 0-15. So hopefully, I only have to do three cycles in total.

Some effects of my treatment started showing up more aggressively over the past few weeks.  The most obvious one is hair loss.  It was really hard to see my hair fall out during the third week after I started chemo.  It was everywhere on my sweater, sheet, and pillow. When I was taking a shower,  almost a third of my hair came out. I cried in the shower.  I was feeling really down for a few days. Although I was fully aware that I would most definitely lose all my hair,  it was still hard to go through the process.  Other side effects involve neuropathy,  like nimbleness in my fingers- which makes writing and drawing more difficult ( >:( ) and some hearing loss. I noticed my ears are less sensitive to high pitches.  Hopefully, they are only temporary. But my oncologist told me that the hearing loss might be permanent. I was reacting really strongly to the news when he told me that.  I felt sad. I was thinking about devoting more to learn about music and play the guitar and sing.  Like EK says, it’s not that high pitches are that pleasant to hear anyway.  Unfortunately, I have an unusual fondness of high pitch voice, because I love Peking opera and used to perform in school cultural festivals. Alas…Gotta live with it…I hope chemo doesn’t further harm my normal body function!!!!!

I want to use ALL my senses to experience and enjoy the world around me!!!! No more harm to my body, please!

I had a lot of mental support from others, so I quickly got over the sadness and found the humor inside to laugh at.  I like telling jokes and making fun of myself. It’s part of me. I got that from my dad and aunt.  I am lucky to have people to share my laughs with every day, of course, not to mention the unconditional love from my mom.

Over the past two weekends, several old friends came to visit me.  First one of them was my best friend from college,  HL,  came all the way from NYC just to see me for a day.  He brought my favorite Wuhanese food “Hot Dry Noodles”.  I was all cheered up at the sight of him (and the noodles).  I haven’t seen him since we graduated from college a year and a half ago.  He’s like a brother to me.  He kept me company in the hospital. We went to get dim sum,  went to a happy hour, hanging out with friends at a bar, ate dinner at my favorite Thai restaurant.  We rode the carousel like kids. He helped to cut my hair, although his hair cutting skill is far behind his laser cutting architectural modeling skill. I was the only child growing up, but I felt I was with a brother I never had. HL is surprisingly mature for his age. Although he’s younger than me by a year, but often I go to him to seek advices or perspective.

Another great friend of mine JH visited me last weekend. She was one of the first friends I made in college. We’ve known each other for almost 7 years. She flew in from Texas last Friday morning. I was in my chemo session. She came to keep me company in the Infusion Center. It was her first time in California. I was really touched that she prioritized seeing me in the hospital over sight seeing the area during her weekend here.  The weekend she was here was the worst weather I’ve seen in SF in a while.  It was raining heavily and was in the 40s. But the last night before JH left SF was surprisingly calm and beautiful. It was right after the rain.  The air is misty, but warm. We had a long walk along Fisherman’s Wharf.  I finally got a chance to be a host to show my friend around at that moment. After walking her back to her hotel, and it was the goodbye moment. I couldn’t stop my tears from running…When would I see her again? JH decides to return to Hong Kong in half a year.  All my old friends are thousands miles away.  HL is returning to China. JJ is in Chicago. E in DC. ZC in Texas. LL in Shanghai…It’s so rare to find someone who you can get to know so well and have been through a lot together.  They are part of my growth, part of my present. I want them to be part of my future…and they will. I believe we will cross paths again in many ways, across the geographical and ideological boundaries bonded by what brought us together at the first place.

I had a wonderful girls night in with EK tonight. We haven’t had a one on one night like we used to in a while. Homemade dinner, dessert. Then home SPA night began. Doing facials, drinking peppermint tea, while soaking our feet in uber hot bubble bath, watching them turn pink, laughing at each other’s weird looks in the mud masks…Savoring watermelon (second dessert) while watching Wallace & Gromit, dosing off half in the 20 min long movie. ahaha…I like how I didn’t need to spend any money to feel like a queen! Life is Good!

A Peaceful Weekend

During the first weekend after chemo,  I finally caught up with my sleep I lost from the stress from the treatment and the housing conflict.  I slept until noon.   It was wonderful so feel safe and protected when I was asleep and I could feel the presence of my mom.  We haven’t been communicating with other roommates.   We lock our doors when we go out.  It’s sad to build up walls against people who share an intimate living space  with, but that’s what we can do now.  We are trying our best to preserve some peace and happiness to our best ability. 

The side effects of chemo weren’t that overwhelming yet, I took opportunities to stay active and maintain my physical strength.  Saturday was beautiful, we walked to the Mission District. My mom said the streets in the Mission reminded her of Hankou, the commercial district of Wuhan.  I had a haircut in a salon in West Portal later that afternoon.  I felt relieved afterwards.  The short hair brings out more energy and spirit in me.  

I went to a concert at the Independent with friends.  The main band, Thao didn’t show up until two hours after. I had to leave after seeing them for half an hour.  Thao did put up a great show. I like her music better live.

It’s nice to have a weekend not planning on medical things.

Through the Clouds

It was raining heavily this morning when I was in the infusion center.  Someone who is very dear to me shared something with me, I was shocked and was in a deep grief.  I wish I could  be there to for him through the tough transition.  I know, taking care of myself and staying well would be the best form of support for him, silently.

Since my diagnosis and hearing stories about my friends,  I feel my outlook on life and what’s important to me have completely transformed, for the better.  I’m no longer wrapped up in my own world.  There are so much more to life than feeling bitter and self-pity.  I have nothing to hold me back from enjoying life.  I cherish the simple joy, kindness, wonderful things that I experience from everyday. A smile from stranger, a call from an old friend, or emails with kind wishes, a drawing depicting an inspiring story will brighten up my days.  I realize I had no choice of getting cancer, but I have a choice of how to live with it, I choose to fight cancer and my fear of death with humor and an open heart…

Another silver lining from the diagnosis: before, I never had the opportunity to open up to my parents. I’m used to living life my own way for the years and shutting my world off from my parents. Growing up in China,  I tried very hard to be a good student, being an over-achiever.  Everything looked good on the outside, I never revealed my innermost feelings to my parents, because I was afraid that they would never understand me

But the hardship has brought me and my family together more than ever. I feel very connected to them. I am not afraid to express my affections to my mom and dad.  I kissed my mom many times this morning I first woke up and in the hospital while she was waiting for me.  I say “I love you” to  my parents everyday and I really mean it.  They will always respond “I love you too”.  My world feels whole instantly…

When the IV was almost done, I stood up by the window, feeling relieved, since I will take two weeks off from having chemo everyday.  The sky slowly cleared out.   The sun shined through the deep clouds.  The golden dome of the State House at the civic center glowed in a distance.  The scene was so thrillingly beautiful!  I smiled…

Goodbye, Dad – Mom and I will Take Care of Each Other!!!

My dad left this morning.  He left on his own.  I was still in bed.  He didn’t let mom and I see him off at the airport, because he wanted us to get more rest and prepare for chemo.  I was in tears after he left. I started to miss him already. It’s me and my mom now.  I never thought of the impact of my illness from my parents’ perspective.  I can’t imagine what my mom is going through on her own here, without knowing anyone, doesn’t speak the language, and seeing her only daughter going through a decaying stage of chemo, but she has to pretend she’s okay on the outside to comfort me whenever I need her.  She makes me realized the greatest of love of all humankind – a completely selfless devotion to her child.  I wonder if I could ever love her back as much. When I am with her I’m home, no matter where I am, or what I am going through.  I could be nobody, own nothing, critically ill, her love grows even stronger. Family has always been very important in my values. But it has never become so important to me.  It’s literally my everything for me now.

I’m feeling from my gut that I am so proud to be their daughter, for them to give me life to this wonderful world and nurturing me to be a kind person.  I need to be strong for myself and people who truly love  me.

I had a whole day at the hospital. I felt more tired than before.

Later in the evening,  we I had a house meeting today to talk about the living situation that we are going to face in the next few months regarding my treatment. My roommates have been very upset about the situation of adding an additional person in the house.  They can’t accept the proposal that my mom is likely to stay longer than earlier January.  I had no other choice at the moment.  After spending most of my savings on the procedures prior to chemo,  and living off disability checks every months,  I don’t have the energy or the money to find a better place for me and my mom to stay.

I’m uncertain how long my treatment is going to be exactly or the challenges I’m going to face medically.  Out of all the panic,  the cold hearted people were talking about “getting a sweet deal” out the living situation, asking me to pay rent for my mom, so they can feel more justified.

Based on the “Rent Board Rules and Regulations: Secion 6.13: Probition Against Agreements to Pay for Additional Occupant: “No extra rent may be charged soley for an additional occupant to an exisiting tenancy, regardless of the precense of a rental agreement or lease which specifically allows for rent increase for additional rent increase for additional tenants. [...]”

I tried to maintain calmness in front of my roommates whose  intentions are ask us to move out for better living situation (for themselves, so they feel comfortable of bringing their girlfriend or boyfriend in).  All they see in their eyes is how to get more money out of someone who’s in trouble for their own benefits…I would have lost my faith in humanity, if there are the people I had to deal with everyday in my life. Luckily, my life is filled with joyful souls, and kind people. I never imagined I would  live with the such mean people in addition to what I need to fight physically.

My mom got really sad after seeing me arguing with them.  She tried to argue with my roommates in Chinese.  I pulled her back and hugged her. We cried together.  In the back of my mind, I was thinking I cannot let these corrupted souls bring me down.  I need to take care of my mom and her emotional well being. We went out for a walk. I told her things would be okay.

(Sorry this post has gotten a little unbearable to read…I won’t think about it further tonight. I will try to gather all the resources and support that I can to find a solution. Things will get better tomorrow. The sun rises.  :)

Day 2 of Chemo

Nov. 17,  2009

There were many challenges today:  Firstly, I still have to have to make a decisions on the medications I would receive today.  Ideally, BEP is the best formula to treat germ cell tumor, almost 100% prognosis.  My oncologist had really strong opinion against  switching the two major components, because the benefits of sticking with the statistically proven regiment certainly overweights the risk of choosing the alternatives which might lower the prognosis by 5%-10%.

Since I had strong allergic reaction to Etoposide yesterday, I almost fainted after only 700ml. My oncologist asked me to “re-challenge” the medication with some injection to prevent allergic reactions.  Luckily, I wasn’t reacting to the med the second round.  So I’m strictly following the BEP regiment. The oncology nurse D told me, the cure rate might be close to 100%…which was very heart warming.

My oncologist is among the best in the field. She wrote half of the textbooks in gynecological cancer, very busy. I hardly have a chance to get a hold of her when critical decisions needed to be made quickly. It’s also hard to get first hand information from her. It’s always passed down through a nurse or my other doctor. But I trust her decisions and expertise.

Second challenge:  my roommate responded to my email explaining my parents stay negatively. She indicated in the email that she wanted us to move out.  I try to be calm and reasonable.  She is going a lot of stress and her own issues, sure, everyone has them.  I can’t believe that anyone could say something so mean in the most critical time of my life…I told her that I am not going to leave because I share my right to stay as much as she does, and hopefully we can resolve the conflicts assuming that everyone continues to live under the same roof.  I feel more empathetic to her than being upset or feel sad. Although my body is going through a weakened state,  I feel strong and powerful in my mind.  I cherish every day I get and every interactions I have with my friends and family.  I’m not afraid of facing life challenges. I feel loving and open.

Like my good buddies PL’s and EK’s words, in the grand scheme of things, this little roommate conflict is so trivial.  Someday, I might have some humor to laugh at it.  I need to focus my energy on healing and quality time with my family. Tomorrow I will focus on enjoying  the last day with my dad. He’s leaving this Thursday. I only get to spend another 24 hours with him…I already feel like crying, thinking about his departure.  I never said “I love you, dad” since he came to visit me.  I will let him know that.

First Chemo Session

My first chemo cycle starts this morning.  I’m not too worried about it.  I’m under the care of a good oncologist. I look forward to getting my treatment started, so I can get better to live the vibrant life that I want. I’m about to a get a good night’s sleep to get through the day.

I had my first session in the morning. My nurse, D, was a really pleasant guy. He went through the legal consent forms with me and explained to me all the possible side effects that I might get thoroughly. He told me that I’ve seen many patients with similar cancer. The type of cancer I have – germ cell tumoris very rare, only found in younger women under 30.  The prognosis is very promising above 90%.  It’s the female version of what Lance Amstrong had before he became the world champion.   My chemo treatment is based on the formula BEP = Bleomycin +Etoposide + Cisplatin.  The tumor is really sensitive to the chemo.  The goal is to reduce a marker in my blood AFP down to normal range. Unlike other cancer, all other common cancer markers such as CA 125 are under the normal range.   I have AFP to fight down from 1330 to below 15.

One side effect of Bleomycin, is concerning though, because it might affect lung function – reducing its full capacity by 5-10%.  Most people who’re not professional athlete, don’t even notice the change.  Lance Amstrong didn’t use Bleomycin because of his concern for his cycling career.  Remaining physically active is really important for me, and planning for my future adventures every year.  I made a promise to myself to do something challenging and fun every year.  I did skydiving from 18000 ft this year.   I hope to use something that has the least side effects to my lung while maintaining the power to fight the cancer, because I have so many things on my to-do list that I need a healthy lung for: like scuba diving, marathon and karaoke singing, etc. I told D about my honest concerns.  He was supportive and assured me that he would consult with my oncologist and work out a plan tomorrow.

He mentioned that he bikes from San Francisco to LA every summer. It takes a week, 80 miles a day. I started biking a lot under the influence of my Triathlon roommate several months ago. I hope to get back in shape soon so I can entertain the idea of biking 80 miles a day for 7 days.  It’s every June. I might not be able to do it next year, but definitely the year after. I will need to listen to my body’s needs very attentively.  I tend to push myself too hard at times.  I’ve defnitley gotten more mellowed out by cancer…

Worth mentioning today, I had a strong allergic reaction to one of the medication: Etoposide. I had severe flashes, on the verge of fainting. Fortunately, the nurse was in the room while it happened. He immediately stopped the medicine and gave me some Steroid and nausea medicine.  I was really scared when it happened. I started to get really light headed, which reminded of the fainting happened on the night of my birthday. I got home and felt a lot better some rest.  EL and KL came to see me after work.  It was really heart warming. Another comforting is that I haven’t lost any of my appetite yet. I have no intention of losing weight, either. Because D warned me any weight loss would be hard on my kidney during chemo. So I had a legit reason to not to feel guilty on taking big bites of that delicious mochi green tea ice cream crepe after lunch my mom brought to the hopstial: bok choy, pork rib and tunip soup and brown rice.

At night, there was an unpleasant roommate conflict due to my family’s stay. One of them doesn’t feel they are welcomed, but really being passive aggressive about it.  I got really on edge and defensive. But thanks to PB for being understanding, I calmed down. Living with others who have differences in a small place, misunderstandings are bond to happen.  I’m really sad that I have to deal with roommate conflict in addition to what I am already dealing with. But it’s my only sanctury here overseas. I want to make it feels like a home I can return and relax, esp.  after chemo…It’s not the best time for me to consider moving out right now,  so I’ll try to stay open to my roommates and gain their understanding in order to make a better living situation for all of us.  Ah, it’s life.  I won’t let it bother me that much…

(This blog is very much the matter-of-fact like.  I’ll be more poetic in my writing next time.)