Dec 13, 2010: My new birthday - the beginning of the recovery

In a few hours, I will be heading to the hospital for the first major surgery in my life.  Exactly how advanced my cancer is can be ascertained once the doctor open me up and examine what's there.  I am going in with the worst scenario in mine, not because I am a moribund pessimist, but because I would rather start at the abyss and claw my way back up, rather than going in with an assumption of a lesser disease and feeling like I am sinking in a quick sand as I know more about condition.  That said, I hope they find the cancer nodules ON the liver, not IN the liver.  This makes a difference of stage IIIc vs. IV.  The five survival rate between these two is about 15% (18% vs. 33%).  Given that I have already declared that the total population statistics will not apply to me, the actual difference in prognosis for me may not be all that different.  Even so, there is something reassuring and comforting about the scenario that I caught this disease at a stage other than the most advanced one.  I would like to believe that.

I will consider this my new birthday.  Dec 13, it is.  I have never been big on dates - birthdays, anniversaries, special holidays don't mean that much to me. I am simply not a romantic type who bestows a lot of meaning on dates and such - or for that matter all the rituals of what a romantic love is supposed to be. Our wedding anniversary happens to be the Valentine Day.  No, we did not choose Feb 14 because it's Valentine Day.  It would be SO uncharacteristic of me.  It so happened that my dissertation advisor's judge, who was supposed to officiate our wedding in a court house in Champaign Urbana, where we both did our graduate work, happened to be available that day.  I remember many years ago when I was working in Bell Labs.  I had a staff meeting with my team members: all men.  It was the Valentine's Day, and at 5 PM, everyone was getting antsy, trying to wrap things up and head out.  When I looked puzzled, they said, "it's Valentine's Day.  My wife will kill me if I don't show up with flowers promptly to take her out for dinner.  Don't you have a dinner date with your husband"  I answered:  I chose a man who will do laundry with me and change my kids' diapers 365 days a year rather than give me followers and gifts a few times a year".

What I did not tell them, though, is my husband turned out to be the kind of man who do laundry and change diapers, while bringing flowers on occasion.  I have to admit this is the bonus I did not even negotiate for, and in truth wholly do not deserve.  

So, this is big, that I consider 12/13 a very special day for me - for both of us.  When I get better, and as I chug along way beyond the statistical forecast, I intend to celebrate every 12/13 with special enthusiasm and a sense of gratitude.  Unlike my other birthday for which I did not do anything to deserve or had any control over, this special birthday, every single of them year in year out, will be something I would work hard to earn.  I intend to do everything I can with utmost discipline to fulfill my marriage promise, that is, I will live at least a day longer than my husband.  This new birthday every year will be something I should be proud for what I have done 364 days a year.

Today, I start my recovery. I am ready for the challenge.

Dec 12, 2010: Conservation Management: how to handle renewable resources

Everybody handles their crisis in their own way.  I handle my crisis in a very academic manner.  I do not mean "academic detachment."  Rather, I mean a fact based, and research oriented coping mechanism.  I study my crisis.  I research it.  I analyze it.  I handle it as if I were dealing with a business problem.  Fact based assessment of the problem and a rational approach to a solution based on reason and not emotion.  Once that is established as a base line, I can indulge in emotional embellishment of the situation and regale in subtleties of perceptual nuance.

When I suspected what I had, I have done as much as research as I could have possibly done.  As cancers affecting women go, this is a nasty one with the highest mortality rate (if not the absolute number) associated with it.  Even caught at an early stage, ovarian cancer is rarely considered "curable" in that the recurrence rate is very high, and the cancer is not deemed to have completely disappeared.  I have seen one blunt statement of a doctor "You only know you are cured of ovarian cancer if you die of something else".  Being an ovarian cancer survivor means she managed to keep a long stretch of remission.  At the same time, recurrence in and of itself is not an indication of the worst scenario.  There are women who live "a normal life" with ovarian cancer recurring every few years.   With continuing advancement in medical science, a woman could live out her natural life span (albeit a few years shaved off, perhaps) with ovarian cancer as a "chronic disease".

I believe I will be a survivor.  I believe I will find myself at the right most end of the statistical curve.  I also believe this cancer will now forever be part of who I am - it's part of my life repertoire.  So, under the circumstance, how should I manage all the resources at my disposal to "co exist" with this cancer?  I need a strategy for resource management for the optimal outcome.

My biggest asset and ally is my husband.   He will be there for me through thick and thin.  All the same, though, I think it's important that I don't overtax him.  Not just out of an altruistic motive, but even from a cold blooded resource management perspective.  Given the nature of my disease, my effort to stay healthy and live out as much of my natural life span as I can will be a marathon, not a sprint.  I need to manage all of my resources as renewable resource.  A conversation management strategy is in order.  I need to make sure dedication of my husband, good will of my friends, and care and concern of other family members all don't burn up in one big spark to generate a maximumly brilliant  one time firework.  Every one needs to pace himself/herself.  Everyone needs a period of recharge.  Every one needs to take care himself/herself first.  I need to make sure nobody experience battle fatigue.  More than anyone, my husband's resource needs to be managed carefully.  I want him to make minimum adjustment required in terms of work commitment.  I remember when I went back to work only a few weeks after the kids were born.  Somebody said "Oh, so you want to be a CEO in no time"  I answered "No I want to diversity my stress".  That's what I want him to have: a diversified stress portfolio, where not all of his stress is solely due to my condition.

It's a long haul.  No heroic measure on anybody's part.  None of us will last long with that modus operandi.

Dec 12, 2010: Breaking the news to the kids

After we came back from dinner last night, I broke the news to the kids.  It started with the news that we are not going on a cruise trip, and the reason is because I would be having a major surgery.

I shared a straightforward facts.  The likelihood that it will be a stage 4 ovarian cancer.  The five year survival rate is below 20%.   I laid out all the raw information.   I believe in completely honest and open communication with kids.  There is nothing to be gained by white washing what we have to deal with.  If I start distorting the reality just so that it's easier to swallow at the moment, they won't believe me in the future when I go through this long journey - as it will be a marathon not a sprint.  I need to establish the baseline for honest and truthful communication.

Beside, these are very intelligent kids. They can easily do their own research.  When they do, they will see these grim numbers.  I need to proactively debrief them, and explain to them why I believe these stats do not apply to me.  I have a very rational, logical and fact based ground for optimism, and they needed to hear that from me.  I laid out my case on why I will be an extreme outlier of the current statistical curve.

(1) My age: the complied statistics has a median age of 65 at the time of diagnosis
(2) My base line health:  other than cancer, I am perfectly healthy.  Not only I am better equipped to handle this disease, I am likely to handle chemotherapy well.
(3) My socioeconomic advantages: it's a well known fact that those who are socioeconomically disadvantaged fair poorly.  Hence average stats that include these cases underpredict my odds
(4) Access to the cutting edge medical care: the population the stats uses as a baseline includes women in square states with no easy access to top most medical experts.  I already learned that the the skill and expertise of the gynecologic oncologist who performs the surgery doubles the odds of good prognosis for women with my condition.
(5) My attitudes, emotional resilience and discipline: More and more search confirms that the patient's attitudes and emotional and intellectual resources are a huge variable.  I have no shortage of what it takes to emerge whole and intact
(6) By nature, the survival statistics are complied with women who have been diagnosed long time ago (over 10 years).  Meanwhile, medical science is evolving rapidly.  Already, promising treatment breakthroughs have been made and more are on the horizon.  As such, the stats complied for women in the past significantly underestimate my odds.

I explained all this to the kids line by line.  I told also told them that this journey is a marathon, not a sprint, and we all need to pace ourselves.  I told them that I would like them to live a normal life, doing things that they enjoy, and not altering their plans much,.  I told Daniel that there is no reason to change his summer plans because of this.  I intend to be around for decades.

While I was discussing all this, I noticed Jon sucking his thumb, though his face was expressionless.  That...... broke my heart.  Last time I saw him do it was when he was a toddler.    Later, I talked with Daniel separately.  He cried, and said he wishes it's he, not me, who is going through.  Perish the thought!  I told him that right after I got a clear inkling for what I was dealing with, I put a list together for things I am grateful for, and the first on the list was "I am so grateful that it's I who is going through in this family, not my husband or kids".

Now, it's out and open.  We push forward.

Dec 11, 2010: The power to rip apart the appearance of comforting reality: I never wanted it

Today, Daniel came home from college.  I was both looking forward to having him home and dreading it.  There was such poignancy about the whole situation when we picked him from the airport - how bubbly happy he was talking about the Mediterranean and Northern Africa cruise trip that was supposed to start in a few days (of course, we had already canceled the whole thing a day or two earlier). 


Tonight we went out for dinner to celebrate Jon’s full ride ROTC scholarship to Bucknell and also ED acceptance. We were all having a wonderful time, both boys talking about what they were going to do during the cruise. All throughout dinner though I was painfully aware of what would follow the dinner once we came home that evening. This dinner was going to be the last carefree family celebration dinner for some time to come. I experienced it as an intensely bitter sweet two hours with an aching sense of apprehension. I felt like a grinch who is about to come and destroy the sand castle little kids are building on the beach. I felt like a brute trampling all over a delicate flower bed.  I felt vulnerable: was there anything ever in life that was rock solid? In a few hours, I will open my mouth and the reality of carefree routines of my kids' life will be irrevocably altered, at least for quite some time. I did not want this power. I did not asked for it. If there is a cosmic overseer, is it how this being would feel, looking beyond the boundaries of past, present, and future, and knowing what is in store of all of us, the cosmic ignoramus who are like little bugs on petri dish. Would this being feel empathy? Sympathy? 


Mild boredom, perhaps? After all, as much as it was a major crisis for us, in the big picture of life, this is so mundane and trite - a genuine cliche if there ever was one. And, oh, how bourgeoisie it is for me to indulge in this! Simply because I can articulate it better, using quasi psychological terms and seemingly more sophisticated vocabularies does not make it any more special than what ails countless souls somewhere half way around the globe where they are facing a real danger of imminent death on a daily basis. 


My cancer certainly made me a cheap philosopher, specializing in making much ado about nothing. Now that I think of it, I don't know how all the writers and artists ever manage to produce their master pieces without the wonderfully inspiring catalyst that is cancer. Maybe they all had it, and did not know about it.

Dec 10, 2010: Tying up loose ends

Amid a barrage of disconcerting news last several days, we got wonderful news today.  Jon was accepted ED to Bucknell University - his first choice school, and where he would like to take his Army ROTC scholarship to.  The school provides free room and board, and it makes his college education at a great academic institution a completely free ride with a monthly stipend to boot.  A quick, back of the envelop calculation puts the total cash value for four years at over $250K.  Quite a win fall.  Though I was more or less anticipating it, it sill made my day!

Now that the surgery date is set, there is a lot to prepare.

First, a visit with Jon's high school guidance counselor.   Jon does not know yet that I will go in for a major surgery and there will be a long recovery process that includes several months of chemotherapy with an outcome that is not guaranteed to be successful.  I wish his last semester of high school, which should be a carefree and relaxed time especially given the scholarship and admissions outcome, wouldn't have to be marred by this meteorite that hit this family.  But, it is what it is.  He was told clearly by the Bucknell admissions officer that he needs to keep up his grades for the mid year school report.  I need to consider all contingencies.  In case he does not handle this family crisis well, and in case his school work suffers as a consequence, I need to create an allay.  His guidance counselor was very supportive throughout the entire ROTC scholarship and Bucknell application process.  I can count on her to keep an eye on Jon.

I went to a gourmet bakery and bought several trays of fancy holiday cookies to the tune of ~$200.  I have never spent that kind of money on something so frivolous.  But I figure, if I am going to do it, I'd better do it in style.  I brought the cookies to his school and arranged them on a table in teachers' lounge and also in guidance counselors' office.  I told his guidance counselor what's happening.  I asked for her help - not as an active agent but as something who can quietly watch over him and intervene when necessary.  She was extremely gracious.

Next on the agenda.  I went to B&N to buy some books that I can read while I am recovering from the surgery.  One book caught my attention: a travel book.  Its title was "1000 places you must visit before you die"  I thought "Geez, they should come up with a more manageable goal".   Having a disease with a high mortality rate does change your perspective.

Speaking of travel plans, we were supposed to go on a cruise from Dec 17 through Dec 29.  A Mediterranean cruise.  We were all looking forward to it.  Kids were excited about it.  Well, it is not to be this time around.   We had to cancel it.  The problem is, we did not get any travel insurance.  Given that we have grave medical issues, we are trying to see if we can get them to give us partial refund or credit for future cruises.  Normally, I would be the one calling them and working aggressively to see what we can salvage.  However, somehow, in this particular case, a dying cancer patient assertively and authoritatively asking for a break does not seem right.  Better that Amir calls and plays the "grieving husband" routine.  The problem is, it did not work.  The airline gave us a break: use the ticket next year.  OK.  we can live with that.  However the cruise company won't budge.  We called the American Express, the credit card we used for this trip.  Hopefully, they can do something for us.  We will see.  I would have to lose all the money.  If we use it next year, that will be great.

One more privilege I am going to lose is the false sense of security and confidence that we can predict what our life will be like six month, year, or five years down the road.  Based on everything I read, cancer discovered at my stage is not considered "curable", even if the patient remains in remission for decades or permanently.   As such, I can never be sure that six month down the road, I will be able to go on a trip with 100% certainly.   Additional testing may be needed.  Recurrence can happen.  I guess we will have to consider travel insurance as part of the cost of "doing business".

Dec 9, 2010: Start of a PR Campaign

The letter I sent out a small group friends to let them know about my condition:

Dear M, D', D'', and F,

I have a bit of alarming news I need to share with you today.    I will be having a major surgery on 12/13, Monday.  I am diagnosed with cancer, but exactly what kind, they couldn’t tell for sure yet.  However, everything points toward advanced ovarian cancer.    The thing about ovarian cancer is, until they open you up, they don’t know for sure and how bad.  However, given that pelvic biopsy confirms cancer and CT scan is showing things in the liver, it’s likely to be at least Stage III and more like stage IV (the most advanced stage).

It’s a bit of a shock, since I got the last general physical exam and yearly gynecological exam in April/2010.    Everything was perfectly fine.  It’s been only last couple of months that something was off, not because anything hurt: it’s just subtle indications and the sensations I have never had before.  I went to see a primary care physician on 11/30, who was alarmed enough to send me to a gynecologist, who got further alarmed to immediately set up an appointment with a gynecologic oncologist.  Meanwhile, various test results came back as described above.   I went to see the oncologist on today.  He immediately scheduled a surgery on the earliest available date.    They will take out all the affected organs that they can do so safely, and try to pick out all the individual nodules they can possibly detect.  I hear that this kind surgery can take up to 10 hours. 

I am going in with the worst possible diagnosis in mind.  If the actual diagnosis is better, then I will be elated.  It’s actually oddly liberating to think of this as a stage IV.  I feel like saying to this monster “I have seen the worst you can scare me with, and I am not afraid”

I am not scared at all.  I am actually pretty calm.  I have done research nonstop last few days.   Yes, the published statistical odds are pretty grim (18% chance for 5 year survival for this stage of ovarian cancer), but I was told by the oncologist that the odds are more like 40% and even better, like 50-60% if indeed it’s not stage IV, but only stage III, so it’s already getting much better than I thought.   I am confident that I can beat this.  If anybody can beat it, it’s me.  But as a realist, I will downwardly adjust my expected longevity by 10 years, from 100 to 90. 

I am grateful that it’s me, not Amir and the kids, who will be going through something like this.  It would be so much worse for me to watch them in a situation like this.  Maybe, I am actually selfish in this regard.  (don’t worry, I am not indulging in self flagellation, just an observation).  I am also grateful that this did not occur three years ago – I would hate to imagine Daniel’s last couple of years of carefree adolescent period and high school experience  to be that of watching his mother go through this.  I am also grateful that this did not happen two years ago – I would have not been able to help and guide Jonathan through the process of getting the ROTC scholarship and getting admitted to college.  In fact, I realize that I have a lot to be grateful for: there are so many women who are in a position to fight this battle without the resources, support, and wherewithal that I have at my disposal.    I truly feel profoundly grateful for the hands that I am dealt: even with this disease, I have been given a winning hand.

That said, I have an aching sense of sadness because of what it will do to my family: I suspect their pain and sadness will be much worse than mine – it’s always better to just fight it yourself than watch your loved ones fight.   I would like to ask your favor.   Please keep Amir in your thoughts and prayers.  I feel the worse for him than for myself.  He has been amazing to me through this and he will continue to be an amazing companion.  I am so profoundly grateful for the fact that he is my partner and he will be there for me.    I am worried that while he will devote himself to me, he won’t have much left to give to himself.  He will need support and care from somewhere.  I will be terrifically well cared for by him.  There should be some comfort and care for him.   I have already been telling him that he should not be consumed with the idea that he has to take care of me foremost.  I told him this should not be his full time job.  This will be a marathon for both of us, not a sprint.  He needs to pace himself.   He needs to take care of himself.  So, any encouragement from you all for him to take care of himself and be kind to himself will be greatly appreciated. 

Please don’t feel bad or sorry for me, because I will emerge as a survivor.  I don’t want you to feel like you are walking on an eggshell around me.  I am completely open to any discussion.  I can give you a whole lecture on mortality rates of various stages of this disease (not that this will interest you, but you understand what I mean:  don’t think you should constantly wonder what will make me feel uncomfortable and try to censor yourself).    If you want to send me email, fine.  If you want to talk to me over the phone, fine.  Whatever.  If I am not in a mood to engage, I will simply tell you (please don’t be offended). 

However, please be aware that I have not told Daniel and Jonathan yet, because Daniel will be coming home this Saturday, and I would rather tell him in person with Jonathan.  So, keep them out of the loop for a few days.

Some additional messages for each of you:

M: In case you are wondering.  Yes, when I went to your dinner event on Dec 4, I already suspected ovarian cancer based on all the symptoms and some preliminary lab reports, though the final test results were not out yet.  I suspected stage III  (I did not know about the liver part then).    Thanks for including us in such a lovely evening event.  I really enjoyed every minute.  We should get together soon again with Hal and Ellie (after my surgery, between my chemo’s).

D': Ha, I did one up on you.  I think what I got trumps yours!!!!!  But, seriously, your presence means so much for Amir.  I am so grateful that you and Amir have each other.  Amir will find such comfort in his close relationship with you and your family.

D'':   You have always been such a good friend to all of us.  Please keep Amir in your prayers.

F:  I am very grateful that Jon has your entire clan as a support network.  He plays tough, but you and I both know what a sensitive softie he is inside.  I am actually worried more about him than Daniel.  I am so sorry that Jon’s last semester of high school will include watching his mother go through a grueling regimen of chemotherapy.  The fact that you are in his life is such a source of relief for me.  Thank you.

One thing though, Fran, if you are face book friends with Jaewon or anyone in my Korean family, please do NOT post anything that they can read.  I am not letting my Korean relatives know about this yet (long story, I will tell you later). 

OK.  This is it for now.  I will let you know how things are progressing.  By the way, I am not keeping any of this secret.  You are free to share the news with other people who may know me – you can even share this email.  There is no cure for ovarian cancer, and being a survivor means being able to contain it and manage it effectively throughout one’s life.  This condition will now be part of my life repertoire, until such time somebody finally finds a cure.  So, no point keeping it quiet.  There are cases of ovarian cancer stage IV survivors who are still going after 20-30 years, living a normal life:  I plan to set the world record on this.

You all have been wonderful friends to me.  Thank you.

Dec 9, 2010: A Communication Strategy

I need to think about how I am going to break the news.  I would like to be open, honest, and direct about this.  The current view is, this cancer is not considered curable, especially when it discovered at a late stage.  This does not mean I will die soon - there are women with 30+ year remission.  However, no one yet with this disease is considered cured regardless of how long an remission they have.  Of course, in a few years, there might be a medical breakthrough.  But, let's deal with what we have now.

Given all this, keeping it quiet and secret is not an option.  I need to consider this as part of my life - a part of my identity.  So, it's better that I am open about this.  The amount of energy that will have to be diverted to pretend otherwise is the energy I can't afford and don't want to afford even if I could.

The kids.....  I will certainly discuss this with them when both of them are home.  I want to be honest about my condition and prognosis.  They are smart kids and can certainly do their own research.  I need to have a preemptive debriefing on what they will see when they launch their independent research.  When they do, they will see the kind of grim statistics that I saw.  I need to give them a nuanced understanding that this average statistics do not apply to me for a various reasons.  I don't want to simply say "I am optimistic and I will be fine".  I believe optimism should be grounded on rational explanation.  "Positive attitudes" devoid of any rational ground is nothing but wishful thinking, and it's an indication of intellectual sloth.   Of course, I am aware that there is such a thing called "mind over body", and the placebo effects amply demonstrate the point.  That said, optimism that has the luxury of a rational ground  makes a strong case for a realistically positive outlook.  I have this luxury, and I need to clearly convey this to the kids.  

As for the friends and family .....  Definitely a clear straight forward communication with them.  I am not fearful of my disease.  I am continuing to learn more about it.  I have seen the worst statistics already.  There is really no room for it get any worse than what I am aware of already.  Nobody should feel like they are walking on an eggshell.  I am open to any kind of discussion, question, and thought exchange.  I am planning to indulge in a maximum degree of black humor and macabre jokes at my expense.  The day I can't do this is the day I am losing it.

There are one exception for this open communication.  My family oversees.  The primary reason is my mother.  She is 80.  She has never been an emotionally strong person.  Even though I live far away with an ocean between us, she has always depended on me for emotional support.  Her two sons are there but it's me who is there for her as an emotional bedrock. There is no way she can handle it  .It has always been a complete one way street ever since I graduated from high school.   If she learns about this, I will have to console her, comfort her, assure her over and over again several times a week over the phone.  I simply do not have the energy right now for it.   In fact, the added burden of managing my mother's angst on top of everything else that is going through is simply not an option for me.

More than my mental resources, the real concern is, what is the purpose of putting her in so much pain?  Why should I destroy her sense of well being and security?  What price for terrifying, cruel truth?   Truth be told, even when I go into remission and become healthy again, I don't think I will ever tell her what happened.  Her sense of security will be so forever destroyed, and from that moment on, she would be constantly constantly what other bad news I did not tell her.  I KNOW her.  I know how her mind works.  There will be no peace for her.  How long is she going to live? Five more years? Ten more years?  I have no desire to create a reality where her life is full of fear, doom and gloom.  I want her to remain where she is.

I am also keeping it quiet from my two brothers and their families also.  Truth be told, they were never there for me, and I honestly do not believe that they will somehow go through a complete metamorphosis and out of the blue transform themselves into caring family members.  Perhaps they might, but they might not.  As it stands now, I have a "good" relationship with them.  Meaning, I have learned to compartmentalize my feelings toward them and learned not to expect anything from them.  I also learned to accept the fact that any relationship with them will be completely one way: me on the giving end, and them on the receiving end.  I made my peace about this.

As it stands now, when I visit them, we have a great time together.  However, if I let them know about this crisis, and if they behave more or less the same as they have before, I am afraid I may no longer be able to compartmentalize my feelings toward them as I have done before.  This is a bridge of no return.  It's Pandora's box - I am afraid what will come out.   Of course, a moralist who likes to pontificate to other people will tell me that I am a coward, and I should give them a chance, and I would be amazed how they come through for me when I needed it most.  That's how a tear jerker movie story will run.  However, that could just as well be a fantasy.  They are living an ocean apart.  There isn't much they can do.  Even if they come through, it will be occasional, very awkward phone calls - no more.  If they don't, it will be a mountain of hurt feelings on my part.  So, no: the cost benefit analysis simply does not work out.

I have an incredibly supportive husband who loves me unconditionally.  More than anything else, this makes me the luckiest and most fortunate woman.  He is my number one ally and partner in my journey.  With him by my side, the added support or lack there of from my family oversees is close to a none issue.