Life is too much of a beautiful mess for me to let go of the practical optimist within … even the sad parts are not so bad when you become real and honest with the whole thing. Reality seems to be the best teacher these days. Humor and laughter have a strange way of abating intensely distressing situations – while it can be acknowledged as a coping mechanism, I think it’s one of the best ways to find a sense of release.

Medical Update:

The most recent lab values –

White Blood Cell Count: 3.2 (normal range – 3.4-10)

Red Blood Cell Count: 3.69 (normal range – 4.0-5.2)

Hemoglobin: 11.2 (normal range – 12-15.6)

Platelets: 66 (<— dropped significantly from 138 in a matter of DAYS. What is going on here?)

My doctors are on high alert because while everything looks like it’s recovering nicely from six rounds of chemotherapy, my platelets are dropping significantly. They are the most highly sensitive in terms of cells in our bloodstream with the shortest lifespan. If they don’t rise to at least a 100 soon, a bone marrow biopsy will be conducted to investigate the matter closely, because there’s only so much that can be revealed medically from blood draws. I’m somewhat behind a few days on starting chemotherapy Round 7 out of 8. Since there is such a strict and aggressive protocol to follow, we want to act fast and be able to catch things early on should leukemia change its course.

Let’s face it – I am really tired of worrying. The paradoxical nature in all this is that while I strive for perfection in the healing process, I actually have to surrender myself into realizing that it’s okay when there is ambiguity and uncertainty. This probably sounds like an easy task, but for me – it’s unbelievably difficult. It’s a certain type of mindfulness that I’m only beginning to understand and practice on a cognitive level.

My nurses and friends have been wonderful. When things seem to go wrong or I seem to drift off into a sea of self-doubt, they rein me back into normality. They seem to accept me for who I am, regardless of the overwhelming number of flaws I possess. They embrace the crazy me within! And I’m equally gravitated to how crazy they seem to be. We’re all beautifully crazy

So we’ll see what happens. I’m just too exhausted with being afraid all the time anymore. It’s liberating to be able to write this all out. It’s nice to free myself from worry and to just enjoy life sweetly as much as I can – to simply live in the present moment.

UCLA

Dear Chancellor Gene Block and Vice Chancellor Janina Montero,

I didn’t know that the first “real world” job I’d encounter while finishing my bachelor’s degree at UCLA would be a highly aggressive attempt to fight for own my life. Cancer seems to thrive on chaos, especially when a biological deviation of the norm manifests in a young, healthy person’s body. Since my diagnosis with acute leukemia over eight months ago, I have been struggling to gain a sense of order and composure to what has been happening to me and other patients. I have seen firsthand the devastating look of horror and disbelief among patients on my hospital floor when they are denied the opportunity for a second chance at life when race and ethnicity matter in marrow donation matches. To be quite frank (but in a joking manner), it’s almost as if it could have been a nightmare that would have woken up Dr. Martin Luther King Jr. from the grave.

I didn’t know that my dreams of becoming a teacher would unfold so rapidly not in the form of being in a classroom among young children, but as an advocate against cancer. I quickly began to blog publicly about my experiences in order to provide a semi-transparent view of living with leukemia at 23 while retaining the integrity of my family’s privacy. Only a few weeks into my diagnosis, I began a grassroots movement to take as much control over the cancer by providing some education to my community about the realities of bone marrow donations and their live-saving opportunities to a host of other illnesses as well. To this very day, I use my story to gauge awareness, even though cancer spreads like wild, delicious gossip among those who may not understand or would want to sympathize with its overwhelming prospects.

I didn’t know that I would find myself thinking about what I learned in an old course I took at UCLA entitled ”German 59: The Holocaust in Film and Literature” as an intriguing way to cope with what was happening to me. Surprisingly, I found inspiration in the bravery of Holocaust victims and examined the human condition under extreme circumstances. During long hospital stays that lasted over a month, I read the works of Nelson Mandela to find the endurance to stay in isolation just as he did when he spent 27 years in prison before his release to become a national figure in South Africa.

I may not have been the best student at UCLA. But if there’s one common denominator I know among Bruins is that of excellence in what we do for our communities. I also think many people do not know that we’re not just students who attend class in flip flops – that we’re very much activists … that while we do a lot of talking and talking, we turn those actions into materialized form by making it happen. Once we get an idea going, this school “runs with it up a storm” and makes sure it turns into a feasible reality.

My greatest wish from this personal tragedy is to find matches for other patients in dire need for their lives to be saved, but it’s absolutely crucial that I have the university’s full support. I hope the visit today from one of my best friends, one of my best advisors, and the best coordinators from Asians for Miracle Matches can provide a glimpse into the sheer urgency of this unprecedented issue:

“Human greatness consists ultimately in nobly accepting the responsibility of being what we are; human freedom, in the personal working out of our fate in terms appropriate to ourselves. Though we may be innocent, we are all potentially guilty, because of the germ of self-sufficiency and arrogance in our nature. We must remember always that we are only man and be modest in our own conceits. Our place in the total pattern of the cosmos is only finite. That is not to say that it may not be glorious. Whatever our circumstances, we can achieve and endure through to essential greatness. It is not what fate has in store for us that matters, but what we do with it when it comes. No power, no imposition, no catastrophe, can uproot the personal dignity of each human being. The seeming caprice and unfairness of life, striking down some down and pampering others, is only the beginning of the Great Encounter. Both the choice and the destiny are ours.” — Paul Roche, Foreword to Oedipus Plays of Sophocles

Sincerely with the best of my intentions,

Janet

I’ve elected to undergo roughly 4 more weeks of additional chemotherapy to further reduce relapse rates by 1-2% extra. This puts me at a completion date that may not be done until the beginning of summer. It’s been about a week since one of my physicians introduced the protocol to me that will call for the reintroduction of some familiar chemotherapy soldiers that I thought I relieved from their duty a long time ago: vinchristine, dexamethasone, aspariginase, and doxorubicin. These soldiers will be cycling through intensively in my entire body and let me be direct — I am scared out of my wits and completely dread the day I need to restart them all. Why? Because I know exactly what I’m going to go through with three of those drug agents … I can safely say that after six rounds, the side effects become second nature to me. I will, probably for the most part, become incapacitated again.

Here’s an honest conversation with one of my favorite nurse practitioners to the best of my memory:

Me: “Will this suck? Will it be bad? (In other words: will I feel like I’ve gotten hit by a truck multiple times?)”

NP: “Pretty much. You’re also going to end up neutropenic.”

This is optional and I don’t have to do it. However, every cancer patient’s worst nightmare is relapse … and I am not taking my chances if there’s a decent opportunity for these chemotherapy soldiers to save my butt. With a slightly heavy heart, let’s begin Round 7 out of 8 total now. I look forward to the day I’m released from the shackles of leukemia.

I apologize for the lack of updates on the medical front as often on the blog — I have been spending a lot of my time *living* rather than writing as much.

This is a really short entry, because I think I’m developing a slight onset of mucositis once again with high-dosage chemotherapy from Lt. General Methotrexate. Unfortunately, most of this needs to be self-resolved and it’s my intuition from carefully attempting to “listen” to my body that there’s a lot of discomfort in this area. I wouldn’t say necessarily pain, but just annoying discomfort and difficulty swallowing whole foods. Oh well, it’s okay, it’s honestly not that bad and I would “take” this any day over some other side effects. Everything becomes highly relative these days. So some action I took against mucositis: medical advice sought from physicians? Check! Looking up health articles on how to tackle this? Check! Plenty of fluids to stay hydrated? Check! Being good to myself? Check!

I’m also experiencing a lot of writing blocks and all I have is the insatiable desire to read a ton of books. Thanks to friends, I have a huge reading list built up. Lately, one of my favorite magazine publications is the Stanford Social Innovation Review… so there you have it for a glimpse on what I do during my free time —  I am a huge nerd. I really enjoy reading TIME magazine too. I’m very selective about the television I watch and prescribe to four shows: The Office, Modern Family, Glee and Scrubs. I prefer natural medicine in the following forms over pills any day: humor, laughter, music, meditation, yoga, etc.

So here’s a brief overview of the game plan: We’d really like to pursue chemotherapy to rescue me first and if you’ve taken statistics before, I would lean towards a high confidence interval. I’m slowly counting down to the finish line, because I am going to be done very soon. We’re talking less than 2 months time roughly. Once we conduct the bone marrow biopsy, if signs of leukemia continue to linger then we’ll head to Plan B: a bone marrow transplant with a successful match and if not then Plan C: a cord blood transplant with a successful match. Plans always change though with the hospital team … we’re constantly revising, adapting, making room for flexibility. And when I mean team I would say not just my physicians, but everyone: physical therapy, nutrition … even the janitorial staff needs to be acknowledged for the work they do. (I only highlight them because I think they are often under appreciated…)

Sorry, oh dear, there isn’t a constant flow or thought process pattern to this entry except some random commentary. I am resting as much as I can to build up the stamina and strength to continue following through on the physical front. It truly is a marathon.

More than anything, I’m sort of humbled and at peace with a lot that has been going on in my life. It’s very nice of a lot of people to admire this fight and believe I am courageous, but I honestly think that if you were put in the same shoes, you’d be very strong too.

Even though I may not have been awarded my official university degree, I am already using the tools and funds of knowledge I learned and applying it to understanding leukemia in all facets – how it must be handled financially, emotionally, mentally, physically, et cetera. If any graduate school is open to ask me what I have been doing with my life experience, I will probably say, “Well, my first job out of college was to learn how to fight for my life.”

Hi all,

TeamJanet transcriber is back for this entry. Although Janet’s been going online frequently (usually on her iPhone) she gets tired pretty easily and she hasn’t had the energy to sit down and type up a long entry. So, here’s the latest:

She said that this round of treatment has been a real “kicker” and she still has a couple to go. She has to keep up the treatments until she’s 100% cleared. She can’t be at 99.9% — it has to be completely gone. The good news for this round is that her neutrophil count is going back up and so the mucositis is gone! To those of you who have asked her what she’s been doing, she said that she’s been doing a lot of singing now that she has her throat back. She described the mucositis as feeling as though she lost something and she’s so excited to have her throat back that she ends up singing a lot. (One of my first memories of Janet is actually about her voice and about her singing, so hearing that she’s gotten it back and is singing makes me smile a lot.) She’s also excited to be able to eat real food again, like carrots with ranch dressing, and not feel like the food is getting stuck in her throat.

Speaking of food, she said one of the highlights is that she got her doctors and nurses to switch her over to the pediatrics menu from the “bland” adult menu — she now gets to eat chicken nuggets and pizza and “all the finer things in life.” She said the food is much more manageable and her only regret in regards to food is that she discovered the pediatrics menu so late in the game.

Some of the things she doesn’t like, she said, are that she has to be very strict about keeping germs away — so she washes her hands a lot with really harsh anti-bacterial agents. Because of the need to keep things so clean, she said her environmentalism has had to take a bit of a backseat. Although most of her food (if she doesn’t eat it) is compostable, the hospital goes through a lot of masks and paper products which can’t be reused because of the obvious concerns about germs.

Other good news that she mentioned earlier in this blog is that the results on her liver came back with the best possible outcome. What happened, she explained, was that while, upon her diagnosis about half a year ago, they did manage to catch her cancer quickly, it was not before micro-tumor cells had started to develop in her liver. With the chemo treatments they went away, but between dealing with the cancer cells, and then the chemo, her liver was going a little out of control trying to keep up. When they did the fine needle aspiration on the nodules (which she said they did twice with ultrasound guidance) they found traces of white blood cells. The white blood cells were simply trying to protect her and her liver, and trying to patch up the damage that all of the “warfare” going on with the chemo treatments had caused. She’s doing well now, and the pain is mostly gone.

She also spoke for a bit about her reasons for wanting to keep this blog. She said that it isn’t necessarily so that other people can understand, but so that in the future, if someone else goes through a similar battle with cancer or other diseases, she has something to read back on and remember what it was like. She said that when she was first diagnosed the first two images she had in her mind of leukemia were of the Mandy Moore movie (“A Walk to Remember”) and of Hiroshima and Nagasaki — and those were the only ways she had of thinking about and relating to leukemia.

To further expand upon what she said in her last entry, she said that while everyone has the capacity to appreciate and really love life, with cancer she has developed an unquenchable thirst for living. Phrases such as “live in the moment” and the thought of how many minutes there are in a day resonate very, very strongly now. She said sentiments such as “beauty is only skin deep” and “what’s on the inside is what counts” also ring that much truer to her now — it’s hard to feel like to same person you were but then to look completely different. While she understands the sentiment of “bald is beautiful” and that the baldness can be liberating in a way, she said she likes her wig and enjoys putting on a little bit of make-up to be able to blend in and feel feminine. At the same time, she also feels comfortable without it and sometimes just throws on a hat to wear around the house. Self-image issues are hard, though, because it’s difficult to recognize and connect what is going on inside with what is in the mirror.

She said she’s been thinking about everyone a lot and that she doesn’t feel very active in terms of putting herself forth on the issue of leukemia, but she has been very active behind the scenes. She said she feels sometimes as though she’s not inhabiting the same world as everyone else — that she’s in a kind of transition space and is waiting to go back to the “real world.” She said she knows she’s a part of it, but at a kind of remove, in a special group — and special doesn’t feel that nice. She looks forward to going back and blending in and continuing her work with helpingjanet.com in order to get the organization up to 15,000 newly registered bone marrow donors.

That’s it for the moment — thank you all for your support and for reading!

My best,
Shelby

Facing cancer is like having a special pair of glasses that brings extreme clarity and vision to life not very many of my peers can see or even my elders; I have essentially received a crash course on what is most important at the budding age of 23. This is leukemia’s only gift, in my opinion, if any.

Hello all,

I spoke to Janet last night and here’s the latest:

She said that she’s currently at the “lowest point” in this round of treatment. Her current lab values are:

WBC: 0.2 (because this is so low, she currently has a neutropenic fever of 102°F, but this should abate once her WBC starts to go back up)

ANC: ~0 (she explained to me that these are the body’s defense cells and are currently practically nonexistent)

Platelets: ~45 (This has jumped from 5 to 45 over the past day due to a blood transfusion)

Hematocrit: 28.8 (when this value drops to 27 or below a transfusion is needed)

She summed it up by saying that basically her body’s defenses are nonexistent and that one of the ways this presents is as mucositis (which is an inflammation and ulceration of the digestive tract and is a common adverse effect of chemotherapy). Because of the mucositis she’s had trouble eating and drinking and currently can’t eat whole foods. Because of this she’s experienced some rapid weight loss. She’s been drinking and eating a lot of shakes and yogurt, but even then it hurts to swallow water. She’s been put on a morphine IV every three hours to combat the pain.

She described it as having incredibly bad heart burn, especially in the esophagus, and she’s on special medication for it that she takes before she eats. I thought at first that it was her name for it, but the general name for it, even in the medical field, is “magic mouthwash.” Her’s is a combination of benadryl, lidocane (an anesthetic), and maalox (a coating agent). She also does oral rinses 3-5 times a day in order to keep the pH balance in her mouth.

She said that while this is the low point in the treatment, she should start getting better in the next few days. She said she’s doing okay, and that her parents are visiting her frequently, and otherwise she just tends to sleep a lot. Between the benadryl, morphine (which she said that if they give her too much she throws up, so she’s not worried about getting addicted), and others she spends a lot of time sleeping.

She said this round should only last a few more weeks.

For those of you who can, blood and platelet donations also play a very important role in the treatment of cancer patients (as well as many others!). (Janet’s blood type, for those who asked, is O+, so she can only receive blood transfusions from other O+ and O- blood types.) For those interested, please check out the Red Cross links for more information. You can type in your zip code to find your nearest blood drive or donation center:

http://www.redcrossblood.org/

http://www.redcrossblood.org/donating-blood/types-donations

Thank you to everyone for your continued support!

My thanks, and lots of love, a TeamJanet transcriber,

Shelby

There are so many holidays upon us this weekend! Let me count the ways: Valentine’s Day, Chinese New Year and Vietnamese Tet Festival, President’s Day, the opening of the Winter Olympics 2010 in Vancouver … and anything else we can think of!

True, I’m a little bummed that I can’t be running around soaking it all in, but such is life! I did some fun internet browsing and found this to describe the elements of the Tiger personality. It was interesting to see this portrayal and yes, I do get a kick out of reading these astrological and cultural descriptions. Enjoy and have a wonderful weekend!

PS. MY LIVER LIVES!! WAHOO!! I have more to explain on that later, but it is A-OKAY!!!! BODY WAS PROTECTING ME ALL ALONG!! THANK YOU FOR ALL OF YOUR PRAYERS AND POSITIVE ENERGY!! THANK YOU GOD! THANK YOU FAMILY! THANK YOU DOCTORS! THANK YOU!! If my liver came in complete human form, I’d hug it. Weird, I know.

Homage to my affection for felines and The Year of the Tiger

“The Sign of the Tiger

Courageous, active, and self-assured.  Optimistic, passionate and independent. Rebellious, dynamic, and unpredictable. Quick tempered but considerate.  Affectionate but careless.  The Tiger is a natural born leader and symbolizes power, passion and daring.

People born in the Year of the Tiger are generally well liked because of their charming personalities.  Often, failing at a given task or being unproductive in his personal or professional life can cause a Tiger to experience a deep depression.  Criticism from loved ones can also generate this type of Tiger reaction.

Tigers are fond of competitions. They simply cannot pass up a challenge.  They may appear cool and are unpredictable, and it would be unwise to underestimate their reactions.  Natural  leaders, they have a strong sense of their own dignity.  They are intelligent, alert, and farsighted.  Good strategists and tacticians, they often have a hidden agenda.  As long as they do not risk their luck too often, and keep their restless nature under control, they will enjoy success and happiness.

People born in the Year of the Tiger are straightforward and uninhibited in nature. They will never give up no matter how frustrated they may become.  But, they are also full of suspicion and  sometimes will take hasty action.

They must be aware of how they react to and are affected by the consequences of their tempers.  They should take it a little easier and learn to pace themselves to keep active longer and to prevent early burnout.  They are blessed with flexibility and often recover quickly from illness or pain.

Some people born in the Year of the Tiger are gentle and full of sympathy.  They are kind, love babies and anything that arouses their imagination.  Others can be stubborn and selfish.  Generally speaking, people born in the Year of the Tiger are fond of playing, and full of enthusiasm and sentiment.  Some are  mercurial.  They can laugh happily one moment, and cry the next.  They will be optimistic, but at the next they will lose their heart totally.

People born in the Year of the Tiger take pride in being different than others, and generally illustrate their originality best in their homes.  Their homes are usually filled with exotic treasures.  They are fast learners, need challenge and often work alone.  Some tend to change careers more often because they get bored easily.  They are natural born leaders and perform best if working towards positions of power and influence.  They like to spend money, and also to share it.  They can be quite impulsive spenders because they know they can always make more.

It is interesting that their two main features are rashness and hesitation, a pair of contradictions. If they know how to relax and do things according to the situation, they can become quite successful.”

I’m writing again for today. Here are the current lab values:

WBC: 0.5 (yeah, pretty much non-existent)

ANC: 0.37 (yeah, even more non existent – these are the neutrophil counts, the body’s defense white blood cells in particular)

Hemoglobin: 12.8 roughly (YES. The only thing that is in the normal range. I got a blood transfusion yesterday. Thank you so much to whoever donated blood with my matching blood type, because you just gave me one of the rarest good days I have yet to experience thus far while a little bit debilitated.)

Platelets: 63 (Yeah, these guys are dropping too.)

I was pretty bad yesterday on energy levels. And now I’m excellent today. It’s a roller coaster on what happens under chemotherapy. I wonder if I am good on energy because I am in high spirits, but quite likely mostly due to the blood transfusion.

Don’t worry about the numbers though; it’s suppose to happen this way under chemotherapy. A medication called Kytril is keeping most of my nausea under control. I just love today for the extraordinarily rare source of energy coming from who knows where. Liver results still sort of pending. Final results not in. Pathology is pretty slow.

I know Alexander McQueen committed suicide today. I was really offended at first — deeply. How could someone take their life away JUST LIKE THAT? As a cancer patient, my initial thought process went a little something like this:

1. Dude, Alex, I don’t know WHY you took your life like that.

2. Hey man, there’s tons of people struggling with cancer, which will take over as the #1 killer in the world someday. I got this statistic from the LiveStrong Foundation. Hope it’s as credible source as can be. They are struggling with the will to live. Most of them do NOT want to die!

3. I am kind of angered by what you did. How will your immediate family feel? They must be torn apart. Or your close friends?

It wasn’t until some of my friends brought to my attention an entirely different perspective about suicide. First off, depression is real and scary. But it’s also just a description for the current state of the human mind and heart. Secondly, whether his actions were on a whim or if they involved a lot of decision-making, mental illness exists. And for it to overtake someone like that to reach a point where he finds no escape except that route… yes that is REALLY scary, but to be honest, for minutes and nano-seconds throughout the course of my very brief life thus far, I have also thought about it too under the stress and sadness of cancer. This is perhaps the most honest revelation I have in public that I know will bite me in the butt one day when it comes to graduate school applications or job employment.

Most people who know me will say that I have a pretty vivacious and bubbly personality. But in times of my private sphere, there will be moments of the incredible reality of cancer, when it will hit me so hard that I really want to find an easy exit out of this all. There’s a reason why each day I have to convince myself with complete utter faith and repetition that I will get out of it. There’s a reason why I sometimes call my friends out to ask them if I can yell at them for 20 minutes and then promise I will buy them lunch in the future, because that’s the healthiest way I know I can do it.

So, Alexander, I don’t know you very well. And admittedly I was really initially angry that you felt you had to do this. But with utmost respect for who you are and the fact that you were battling a mental illness… who am I to judge you and how you led your life? I just hope that wherever you are – that you are finally at peace and free from depression and the sadness you felt. And I am so glad to have my friends sort of “light yell” at me and to bring this awareness to me and for not giving me a break from cancer to tell me this.

PS. Sorry for bad writing. I am quite lazy tonight and just overjoyed with energy so I will go do some more laps in the hallways, yeah!!