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

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

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.”

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!!

      Janet asked me to write a blog entry for her today, so if you notice a lack of eloquent writing, that’s just me. Don’t worry though! Janet says that today has been one of the good days. It’s her second day of chemotherapy on this round. Her main two drugs are cytarabine (she calls it “so terrible”) and etoposide; both these drugs are very potent but very effective for her Mr. Luke. They both work by inhibiting different parts of DNA replication in cells, thereby arresting the cells in the middle of the division process (high school biology, anyone?). The side effects are severe though. Janet’s been nauseous all day and etoposide is so potent that she can actually smell/taste it as it goes into her body. So she’s been taking multiple showers a day to clear that out. Despite all that, Janet has had enough energy to watch some TV, though talking on the phone or spending too much time on facebook makes her tired quickly.

       Also, some of you must have heard from Janet or from her facebook updates that doctors have recently found a few nodules in her liver.  They did a full checkup of other organs and thankfully everything else is doing well. Doctors did a fine needle aspiration of her liver but the results haven’t come in yet (cough cough, pathologist who leaves Friday night without looking through time-sensitive aspiration work…whoops, did I say that out loud?). Because the chemotherapy is so important in treating Mr. Luke, it must proceed without much delay. So that is why Janet is back on chemo before getting the liver results. One theory to explain the liver nodules is that macrophages (immune cells that eat foreign material) have built walled off toxic substances in her liver. So these nodules that we’re all worried about may actually be the body’s wonderful way of protecting Janet’s liver from further harm. The liver results will tell us for sure though.

      Well, it has been a privilege talking to all of you. One last thing…Janet is entirely thankful to all of you, thankful for your prayers, for your kind words of comfort and wishes of strength. Rest assured, she has received all your messages and is reading through them as fast as she possibly can. She cannot respond right away because of the nausea and tiredness. But a response will arrive! Thank you once again for being with Janet in every step of her fight.

Lots of love,

Lavanya

I want to ask if You can be with me always. Allow me to feel Your love and warmth pouring into my soul, like melting gold filling the depths of my heart. Can I hold Your hand when I am nervous and scared? Can I ask You to help me get through the loneliness of the night? My room is too small to ask my parents to stay; they won’t get any rest anyway with nurses coming in for vital signs and blood draws.

I’m not quite sure what is going on with my liver. I am whispering to my body to protect it during chemotherapy – build some type of protective glass-case shield around it, but who are we kidding? Blood naturally passes through. Makes sense that it’s getting messed up a little. Brain is excellent. Kidneys are excellent. Just the poor liver getting out of hand, an innocent bystander taking all the gunfire shots in this war. All organs and tissues need to toughen up and remain resilient. Can we do that?

23-years old. No smoking. No recreational drugs. Social drinking the equivalency of one strawberry margarita every four months during my time in college if you average them all out evenly. You can probably tell I’m trying to reason this out, because I thought I kept a relatively healthy lifestyle. Ah, but the absence of sleep. And working overtime on a lot of things. That could have been it.

I am not angry at You. I think I’m just starting to realize that it takes events like these to put into perspective how precious life can be. And how I desire it so much now. But it is hard to live it to the fullest within the confining walls and restraints of a hospital. My idea of living it to the fullest was traveling, becoming a teacher, being passionate about the work I do … all I can do now is simply dream about these things in a bed. So for now, I live vicariously through movies and books in my cocoon, hoping to emerge as a butterfly one day from all this. I begin planning for my life after cancer, because I assume I will survive. Moving ahead and forward is better than pausing forever.

I know everyone has their time to go, but I don’t think now is my time. I am quite certain of this. As much as I want to be up in Heaven with You someday, feeling endless joy and who knows – eating all you-can-buffets all the time — I’d like to feel the rhythm of the Earth for as long as I can – even through all the chaos that we go through on land that pales in comparison to the perfection of Heaven. Why? Because my loved ones and friends are here, and I don’t want to part with them anytime soon. Because there is still so much left to be done. I want to be playing checkers or chess with other elderly folk someday, cranking our necks to watch meteor showers … becoming an old cat lady with her grey, “salt and pepper hair” wrapped up in a bun.

I spent my 23rd birthday in the hospital. I wished for one thing, and though it’s bad luck to reveal what the wish is …. You probably knew exactly what I desired.

I shed my fears away tonight, and ask for calm and peace. Bravery in the morning for procedures. Courage when my doctors reveal more information with results. Luck so that chemotherapy is not further delayed by complications.

And so, my heart is longing for You. As Mother Teresa once said, the final analysis is between You and me. Will You be there for me so that one day I may be a living testimony to all the cancer patients of tomorrow?

Love,
Janet

Just an update from Janet. She’s done with another round of chemo now. Just a couple more to go. Though she did this last one as an outpatient, it was probably tougher than any of the rounds before as each shot just put her more and more in pain. She’s resting now, recovering, and holding strong.

-James

GOODBYE INTRATHECAL CHEMOTHERAPY! (a.k.a. spinal taps/lumbar injection)! I finished my last 6th one this week. Since my type of acute leukemia is notorious for spreading to the brain, I was assigned a regimen of 6 separate doses to PREVENT this fatal event from occurring. According to UCSF, this is called CNS Prophylaxis:

“ALL frequently can recur in the spinal fluid (the fluid that bathes the spinal column and brain). To prevent relapse at this location, chemotherapy must be infused directly into the fluid that bathes the spinal column. This is done by inserting a needle between the vertebrae of the lower back and infusing chemotherapy directly into the clear spinal fluid, which is called intrathecal chemotherapy. Patients are routinely given 6 to 12 injections of intrathecal chemotherapy to prevent recurrence of ALL. More injections may be necessary if leukemia cells are detected in the spinal fluid. Most people complete intrathecal therapy within two to four months of starting their treatment. Headaches and nausea are the most common side effects.”

That’s right, I am done with that forever. I hope. A note to other cancer patients undergoing this: if you get a headache after lying down for 30 minutes, try giving it an hour. I know, it sounds kind of long to be laying in bed, but you can grab an ipod and listen to some music or read a magazine. Sip some apple juice. Take a nap. Before you know it, you have already decreased the chances of a severe headache that could potentially last for days, weeks… also, caffeine might help so try drinking a Mountain Dew or Coke. Make sure you’re hydrated with fluids. I am simply regurgitating tricks and advice from my doctors.

GOODBYE SERGEANT ASPARIGINASE! You have been relieved of your duties and I will be presenting you the Purple Heart of Honor. What did he do that was so great?

“All cells need a chemical called asparagine to stay alive. Normal cells can make this chemical for themselves, while cancer cells cannot. Asparaginase breaks down asparagine in the body. Since the cancer cells cannot make more asparagine, they die.

When asparaginase breaks down asparagine it is broken down into 2 chemicals, aspartic acid and ammonia.  The neurologic side effects seen with asparaginase (such as, confusion, excessive sleepiness, agitation, disorientation, or coma) are related to increased levels of these chemicals circulating in the body.” (Chemocare.com)

I was quite fearful every time I received the injection. I would ask my nurses if they could stay with me for a little longer after the injection was given, because it’s known to cause immediate reactions within 20 minutes – like a sudden difficulty in breathing normally. I was spared through nearly 10 trials, because even though you didn’t have a reaction with the first trial, you could still get a reaction later. You have been really kind to me Sergeant, and I hope you’ll be kind to other patients as well by reducing the accompanying side effects to their bodies.

I still have a long road ahead of me. In fact, as I’m reaching the halfway mark, I just went through the “easy” rounds. The remaining chemotherapy drugs will continue to demand more of me physically. I’m not sure how I will turn out, but I am truly grateful for family and friends who understand me and are willing to put up with this journey.

SIDE TANGENTAL THOUGHTS ABOUT HAITI (please don’t read if offended by some references to God)

While I was bed-ridden for the past week (like literally my younger brother came home for the long MLK holiday weekend, and I barely saw him much because I spent 17 hours in bed on average each day), I told God that I was in a LOT of pain. Simultaneously, I was also ashamed of whining about my side effects when I learned that a struggling government marred with corruption and ill weather (hurricanes) crumbled into pieces after a devastating quake. I wanted so badly to launch into a helicopter, use my International Development Studies background, go to the scene of action with sweatshirt arms rolled up ready to pull people out from being crushed, finding them shelter, oh HELL — bring my own Brita Filters from home or a boiling point to get some clean water, use my decent French to help language communication, distracting little kids with stuffed animals for them to hold … but there was nothing I could do except maybe pull out my red envelope money from last year’s Chinese New Year’s and cross my fingers hoping that non-governmental organizations like Oxfam and Doctors Without Borders would utilize the incoming U.S. aid with expediency and honestly.

And then I told God, it’s okay, go help them first. 200,000 dead. They need it more than ever now. It was funny, because a close friend called me up and while I was talking about this, she told me: “Um, you do know that He is Almighty, right? He can literally be at both places at one time.” And we laughed. I had forgotten about this, but in a way, I don’t think I would have minded if God was somewhat limited with His hands, his heavenly staff stacked with a bunch of prayer requests for Haiti, that he had to put my wishes on a secondary list. Aw heck, I even started to forget about my side effects. It’s been raining a lot on the West Coast, and there are times when I wonder if the sky is grieving for what happened in this fragile, but beautiful Caribbean country.

If you are poor like me (read: college student, unemployed, or has cancer) and can’t donate much money to Haiti, you CAN click-to-donate for free (everyday!) at http://www.care2.com/click-to-donate/haiti/

Viva Haiti! Viva Survivorship!

Some thoughts:

- Thank you so much for your birthday wishes. I live to see my 23rd birthday! I don’t think I need to say anything else.

- I am nostalgic for the days when I used to run around UCLA with a coffee mug in one hand, a backpack that weighed 25 pounds filled with my binders/textbooks/laptop, a blue teacher’s bag filled with tutoring lesson plans strapped on another shoulder, a couple more books in my hand, and a copy of the UCLA Daily Bruin newspaper under my arm to stay aware of campus events. I was a walking disaster, but that’s how busy I was …. running around like a little bird from building to building trying to pack everything I could do in one day. And when I mean nostalgia, I mean to say, I long for those college days when I felt as if I was being trained for the real world in an experimental setting … any mistakes were easily forgiven (not too big of a deal): i.e. not scoring high enough on tests, coordinating meetings, having good turnouts at events planned

- Today I broke down in my friend’s car out of nowhere after hearing someone received a bone marrow transplant successfully. I think these were tears of joy though and extreme happiness, though quite a weird reaction, you’d think? It was all very sudden too, like a switch in me just turned on, and I was completely overjoyed.

- Did I say I was exhausted? Fighting nausea non-stop. I’m loaded with anti-nausea medicine, but have been vomiting on the occasion, and that’s not suppose to happen with these powerful meds. This doesn’t usually happen with the current round I’m in — aspariginase and vinchristine. Round 4. I’m halfway there. At most, I felt fatigue, jaw pain, and muscle aches. A nurse practitioner reminded me that the rounds aren’t mutually exclusive; they build-up as I go along, so by the time May or June 2010 hits, you can bet that I will be pretty OUT OF IT.

- It SUCKS to be extroverted and sociable … with leukemia. The isolation KILLS. The cancellation on seeing friends at times I had made commitments to beforehand makes me feel so FLAKEY. I NEVER stand any one up, and feel like I have to apologize so much for having them to be flexible with whatever my body is feeling that day. Lots of guilt. Lots of it.

- I have been bed-ridden for the past few days. I sleep at odd hours, just whenever now. Doesn’t care if the sun is out, I can probably take a good nap and lead myself into REM sleep. I also stay bed-ridden sometimes because when my head is positioned horizontally along the bed, my headaches don’t hurt as much. It must be the 5th lumbar puncture I got during the hospital early in the year.

- It’s not depression I’m fighting. And I’m not in denial either. I actively seek out help when I need it. But there are days when I wake up with a dim blue sadness, because the days seem longer than I had expected. I feel very lonely and am finding it hard to readjust to more introverted activities or hobbies. I crave and seek human contact from my personal world. To remedy this, I already made lists of ways to get myself out of these blue moments: calling a friend at least once a day, visiting a park for fresh air, indulging myself in popsicle sticks and chocolate without a care in the world (except that I’ll brush my teeth afterward)…

The key to fighting what you may think could be an onset of depression or just the plain blues from time to time is to allow yourself to feel sadness when it hits you, but not to let it dip so low to the point of no return. I think that’s what gets people in trouble often. Feel it, cry, vomit all those emotions out, then move on. Pick yourself back up.

All right, another wave of nausea hits. So tired that it seems like a truck hit me. Or a small car. Very dizzy, headache, nausea, jaw pain, wah, grumble, complain, complain. I can’t spend more than 15 to 20 minutes on my computer without the desire to purge. Will write again soon. Should try to use my time wisely when I have peak moments of energy.