Post Scan

July 28 was the last PET.  I think I'm getting good at them now.  I had to peek at the scans before I left; however indecipherable they were to me, I knew there was no new activity.  Relief was mental, emotional, and even physical.  Upwards and onwards, starting now.  I'm not holding back, I'm trying to juggle things all at once -- I feel like a dam breaking loose.  Time will tell if it was ambitious to move forward so quickly.  I feel like I should know better, be smarter in the aftermath.  Or, am I still the amateur?  If it's not the right choice, life will be that much more difficult.
July 28 was my last day in the desert. 

Recovery

Port, out! Awoke at the hairline fracture of dawn to get to the surgery center by 6:15.  It was no problem, as I am all full of warm and fuzzy feelings for my fellow LA ex-pat surgeon and his professed love of all things Cantonese.  And there is no way I can behave curmudgeonly when my favorite man takes the day off to be at my beck and call.  I know he's dedicated when he's actually conscious and ready to go before I am.  Did he even sleep??  I wish he was more relaxed; the procedure was described as under thirty minutes and something I could transport myself home from.  Hey, just install a drive-thru window, equip a latte machine, and we're good to go. 

• Local anesthesia - i.e. repeated poking by a sharp object until you don't say ouch anymore
• Port extraction - something like a tooth extraction, per the doctor
• Cauterization - he's barbequing
• Suturing - he questions aloud if it's monocryl, and I feel its raggedy texture

FYI, surgeons, quit with the running commentary when your patient is awake.  Yea, I don't want to hear how the procedure is "easier said than done" while you're struggling in my vein. 
Afterwards, breakfast (an event so rarely shared with husband), movie, and world cup.  Nice day eh?

I'mma space bound rocketship!

lumpy bumpy

I just feel silly, worrying all the time. I know there's no way the lymphoma can come back so easily. Port removal scheduled for the bottom of the month. Local anesthesia, 30 min procedure.

onemonth

Lots of phantom pain, anxiety, hypotheticals.
Does my armpit feel funny? If I'm always lightheaded, can that be a sign? Why is my right neck swollen again? Is that a node? I know it's not, but it's hard not to think it.
I see the surgeon on thursday to arrange for the port to be removed, but I'm always wondering, what if?

So considerate

Modeling wigs for my benefit.

I have the prettiest husband ever.

Land, ho!

Ahoy, mateys, this title isn't so much what the pimp says to his pilotess, but the sign that the journey's end is in sight. Now we wait two months until I am cleared to have the next PET scan, and we wait on taking the port-a-cath out. That's right baby, things are looking up.

Count it down

Second to last day of radiation! Couldn't be happier, doo-doo-doo, nothing's bringing me down these days, not even getting fat bills in the mail, not even contributing excess in my IRA that I need a notary to fix (who knew?), not even eating too many cookies ( :{ ).
I'm a proverbial clam.
Best thing is, the future is bright and imminent. Planning long-delayed honeymoon? Check. New job prospects? Check. Moving on from this? Check check check.

Drink This, Not That

Chocolate is the best, it could actually pass for a shake, if you liked your shakes gummy and metallic-y. Now since I'm reduced to soft foods, Ensure has become a main food group. The plastic bottle is the way to go, otherwise you get a mouthful of chalk-aluminum frappe. Vanilla is growing on me, but I will never dare try butter pecan. Why do my tastes in drink mirror those of an 86 year old lady? I think my affinity for Ensure dates to way back in the day when four teeth were extracted to fit braces with those detestable rubber bands ensnaring the uppers and lowers. Just thinking about it makes me go ouch. But Ensure parties? That's a bit much. Especially when Ensure Plus has 350 cal per 8 oz!
Slim Fast seems more worth it, since it's 190 cal per 11 oz, but it's got bulky fillers to fool you into feeling full, and really that just feels like indigestion.
Boost, even though from respectable Novartis, tastes like oversweet candy blended with powdered milk.
Someone said Glucerna is less sweet, that makes sense, so maybe that'll be next to try.
The absolute worst is Atkins Ready to Drink shake. It's so gross. It tastes like watered down Ensure, now with Extra Metal Powder. It's worse than Muscle Milk, which has been known to cause digestive tract dilemmas.
Now that you've got your nutritional management cocktail in hand, Cheers!

Remember, things are different now

Last Friday was an onco visit. Everything's a-ok, but we had questions. How often will follow ups be? We were relieved to hear that successive PETs will be superlative, a good old cbc every six months will suffice. (Hey, it's lighter on the wallet too.) Plus, as the radi-onco pointed out, from here on out I'll spook at every little bump and lump, I'll probably be nervous enough to be over-cautious. I'm pretty sure I know how to be a compliant patient. Anyway, I'm elated that we can eliminate unnecessary sources of radiation and its consequences. Recurrence in Hodgkin's is less than 10%, with the most risk in the two years following treatment.
That led us to second question: when can I get this stupid port-a-cath out? Initially, doc onc said "two years" with a straight face. But I guess he saw my complexion (maybe I yelled a little) and he changed his answer to "whenever you want." You know, the chance that the tumor will not change in size or activity after radiation treatment is less than 5%. And the likelihood that I would need more chemo in that case is slim. But why rush to take it out? It's ugly. Period. Sure, vain you say, but it's raised, it's scarred, I have to flush it with heparin every four weeks, and I want it out. Some people keep their ports. Morbid. Seriously. It's psychological! Want to get sick? Just keep thinking about what if you get sick.
Can I get back to life (FOOD) as normal? Doc says sure, just don't become neutropenic anymore. Bring on the sushi! Any contraindicatives? Absolutely no hormonal medications, they increase risk of breast cancer, and I don't need that additional risk. Interesting, I would have never thought of that. Radi-onco acknowledges that limited use is fine, but 25 years of it may not be. Who knows what long term studies have yet to show.
Things will be getting back to normal, but not quite. One thing I resolved is to really take greater consideration for myself. Natural foods only, no more processed foods, soda, refined sugars, preservatives. I'm not invincible anymore. I can't just throw junk into my body and expect it to handle it. Things are different now.

Speaking of all natural, my wish was granted when upon receiving this delicious gift. Thanks hon :)

7th day of radiation

Acupuhla things are happening now: throat is getting scratchy and makes gulping water seem like swallowing a fish whole (now sipping genteel-like), and energy levels are down (disrupting favorite pastime, shopping). Speaking of which, preposterousness of shopping while stickers are all over one's chest is an unprecedented side effect. Anything cut lower than my chin is no good for me. Every single nice top is cut down to the belly button. Why is the mall trying so desperately to turn everyone into a hoochie? Anyways, it wasn't a total waste of time, as I spotted this ridiculously cute BCBG, please, the picture doesn't do it justice. Invite me to a lantern-lit lagoon-side cocktail party so I have a reason to spend money I don't have on this.

Mondo Rad

First radiation treatment today took 40 minutes -- apart from the time I hung out with Scruffy and Lucky (you can see them on the ambassador page). We were chillin in the waiting room where Lucky made himself comfortable on my lap while a musician played vaguely spiritual pieces on acoustic guitar. Not only that, but while chatting with the Paws & Hearts founder, I was slightly embarassed to discover he was my patient at Lenscrafters. Awkwardness averted as the tech stepped in to guide me to the treatment room.

More like treatment cave, I mean it's huge, about 20 x 20, and it has to be because it houses this enormous machine. It wasn't the four-arm version as mentioned in Wilbur's post; mine had one arm which travels 360 degrees circumferentially around the treatment table. Lying comfortably with my neck tilted back, I gazed at the starlight decoration on the ceiling as the machine hummed hypnotically beside me. With the arm rotated directly above me, little bidirectional skewers held in the glass panel shifted and morphed as the techs analyzed my PET image superimposed over my body. Those moving pieces actually help delineate the proper treatment field, and through them a light beamed down a polygon that the tech markered on my chest.

An x-ray was taken. The arm rotated behind/below me and a flat digital radiography panel was lowered down thisclose from my face. Very cool.

The treatment proper was so fast, 30 seconds each from the back and the front. The metallic hum is drowned out by a high pitched beep, and a flashing red light -- otherwise known as sure signs of danger. That got my heart pounding.

All done, I slathered on some aloe ointment and went on my merry way.

Sorry for the graphic photo ... :{ but anyways you can see my thyroid is directly in the field (tho they have kindly avoided my larynx) as well as upper lung. I have to keep those stickers on. Lovely -- summer is just the time to invest in crewnecks.

Chinese domestic bliss

While again underemployed, look what I did today!

Wrapped my own 水饺 dumplings, I did :)

Ode to the most superficial loss

.:.:. Chemo pattern baldness

I discovered something cool about chemo+alopecia. It's actually trackable by looking how the diameter of the follicle narrows and then recovers. The hair shaft gets thin as chemo causes apoptosis.

You can see my hair is going to continue to fall out; it's just a matter of time. Thank goodness I started out with relatively lots of hair. So as the rest of the damaged follicles gradually shed over the next 3-6 months, I'll still have new hair growing in.

I hypothesize that I lost less hair because of my hair type (or because I have less p53 vs Caucasians). My hair lives on, thanks to my thick and coarse Asian follicle -- exactly the type I used to curse at in the mirror. Its stubbornness used to mortify me that it would kink up in some places, never hold a curl, be so straight it would drag down and hang flat and lifeless. How could I miss committing an hour a day washing, drying, burning, bushwacking, dousing with product, just so it could disobey and cause me fury? Now that it's gone, all I can remember is the fun times. If only I had the chance for one last chignon! Obviously I still have hair, so the ode is moot. So much for my sad story. Did you know that 80% of chemo patients regard hair loss as the most distressing side effect?

Now with a boyish cut, it must be styled every day (no more throwing it into a ponytail). It's just funny when it sticks up in the morning. I baby my hair with sulfate-free shampoo, forgoing conditioner in an attempt for volume, letting it dry naturally which means my cowlick sticks up more than ever. No comb-overs as of yet, but my scalp is threatening to flash in public, possibly blinding some innocent bystanders with its whiteness. But hey, I even found a mole right where my hair parts on the top of my head, a good argument for a hat habit, or at least reversing the part once in a while. One male patient even commiserated with me by sharing how Propecia has worked wonders for his pate (and his prostate). If nothing else, I'm comforted by the knowledge that my lashes are twice as long as ever (thanks, Brooke Shields). Hm ... next use, latanoprost on my head?

PS Ink

I got my first tat. Actually, there's three.

Just three dots ... reminds me of Phoebe in Friends "i got the whole world". Yea, i guess i got a galaxy!

Stress Test

Upon arrival at the radi-onco's office Tuesday morning, I was presented a short stress survey. Pretty straight-forward, on a scale of 1 to 10, check yes or no to various factors like finances, childcare, self image, etc. Nothing like a good 32 factors blaring at you that you could start neurosing over. Considering mama had driven in that morning exclusively to "ask the doctor all of the possible questions" and Wilbur had prepared a laundry list of concerns (agitated by the ir/relevant forums that he spends more time with than with me), maybe there was more stress than I cared to realize. Could be tired, having spent the last Thurs-Sun in class, Mon at work (a bizarre day including devious office politics where there are plots to overthrow the current managers, a patient who demanded to see the "real" optometrist, and endless multifocal contact fits plus one follow up whose records were lost ... from 5 days ago (o Lenscrafter$, never ceases to amaze)).

Firmly, I circled "4" on the stress scale. Granted, I have a rather logarithmic scale, where

• 1 is a catatonic state - "Reality is the leading cause of stress for those in touch with it."
• 5 is kind of like playing modern warfare on a venti vanilla doubleshot
• 7 is simultaneous wedding planning, full time work, and getting in a car accident - "There cannot be a stressful crisis next week. My schedule is already full."
• 10 stress is simultaneous laughing, crying, and eating - "when you wake up screaming and you realize you haven't fallen asleep yet."

There was an undercurrent of dread and paranoia while expecting the PET results. What worried me was my right neck still felt swollen and left armpit tender to the touch, so I wondered if possibly the chemo didn't work. My hair was continuing to fall out (which it will, see later post), skin is patchy, and nails are so brittle - otherwise typical signs of stress.

Later on, Wilbur joked that I must have answered "1" on the survey, definitely a disconnect with how I feel and how the person closest to me perceives me. I mean, sure, I can keep my stress under control, there's no need to compound the situation by freaking out. But, as a patient, I find it my responsibility to set the tone for how others act around me. Is this also a reaction to the stress from people around me? Probably, and while this is the most frustrating to others when they worry and assume I'm lackadaisical, part of it is finding that their worry relieves me of my urgency to worry. I'm relegating my worry to others so I have time for more stuff. Like modern warfare.

First Friday sans chemo

Granted, the momentous day was celebrated by being chained to a chair through eight hours of continuing education, but all I could think of was I'm f r e e!

Monday

Poked twice in the right arm, twice in the left arm, once on left hand before IV successfully placed. Nurse: "Your veins are so deep, I was afraid I stuck the needle all the way through your arm!"

Sunday

On Easter Sunday, we were able to witness testimony from a girl newly baptized. It was about one year ago that I was baptized, and I came to realize how amazing the way life has unfolded since then. Because I have God, faith, community. Because I have peace and purpose. Because of my angels, family and friends, sent to protect and comfort. Because I can feel so much joy despite that otherwise dreadful fact. Obviously after my public proffering of faith came the diagnosis, but it struck me that I was just in time.

Saturday

What a blessing this weekend was. This was our first official date after chemo, and we also made up our annual D-land pilgrimage. Our history of memorable Disneyland moments notwithstanding (you may have heard tales of when I broke my arm, of when we scored a pair of special fastpass cards, of when I fell in some kid's vomit --> not all on the same day), our experience at Disney wasn't complete without trying the giant (it must have been 2 lbs) turkey leg for the first ... and last ... time.
As we stood in the interminable line for Indiana Jones, the cute couple behind us was gifted some fast pass by a kind stranger. For a second, Wilbur and I exchanged a look that said 'We used to be that couple!' It kind of made me wonder if we've been passed over by fortune and chance, like we somehow fell out of cosmic (Disney) favor. But decidedly enough, we've been blessed through and through and can spare to share the wealth with those other moony-eyed lovebirds.

Don't worry, my husband knows

There's nothing like hearing words your want to hear from the lips of a beautiful woman. You laugh ha ha, but it's true. Heart palpitating, eyelashes fluttering, fingers trembling, all with the nervous energy of meeting someone who will take part in defining your fate. You dress with greater care, you practice to say less stupid things, and most of all, you're prepared for bad news and potential frustration. Anyway, we talked, we laughed, and she answered all of my pressing questions. She was everything I hoped for: confident, outrageously smart, prepared, organized, and most of all, thoughtful and maybe even innovative. Tall, slim, olive skinned, regal, and lovely. Officially, I found my radiology oncology crush.

Day 138

Sunday was dreadful! With Wilbur congested and me nauseous, we were a sad chorus of miserable groaning. Plopped on each our own sofas like beached seals (maybe that's a better description of me than Wilbur who I will liken to ... a walrus ... cuz of his honking haha jp babe), we alternately slept and prayed for hope the day would get better. And it did. No kidding. No two day order in advance. Crispy, juicy duck. AND fried scallion pancake with spicy bean sauce. Ah, the day we found duck in the desert.

It is all goodness

Yesterday marked my last chemotherapy: no more infusion of toxic drugs, no more worrying about my hair loss, no more gross nauseating weekends, no more! Celebration might be a bit premature, since radiation is supposedly worse than chemo. Everything now is about looking ahead. We need a plan for radiation, a plan for me to be well, to find full time work, to find benefits with health insurance, to move on from this. The timeline could be short, with a radiation of roughly 5-6 weeks. That means a new job and possible relocation in two months. Things should be happening pretty quickly from now on.

Re 125-127

Haha, and by supporting the Lymphoma association, that means Wilbur let me shop! With this coupon

Oi

We'd been looking forward to Paribas since pretty much last year. The photo that heads Wilbur's portion of the blog is actually from when we stood in front of last year's tournament bracket. What a chuckle that our tickets happened to target on chemo week. I psyched myself up to stay cool and not wimp out at home ; and I did it (thanks to a practically liquid diet), staying at the courts for six hrs (it helped that we were invited to a suite w/ lunch). So worth it! even if I felt nuked all day Sunday. Not only that, we headed out for dinner with Vince Sunday night, so I thought this sesh went the smoothest yet. But anyway, today, against the way harsh rays of the afternoon sun, Wilbur noticed my right neck is swollen, if ever so slightly. Yes, that's the side that had the larger node, that had the excisional biopsy, that has the scar. Actually, it's been bothering me for about a week (around the time I restarted mat pilates. coincidence? hmm). It doesn't seem to go away, but at least it's not getting worse. No palpable node, and it's not extremely noticeable by photo. Don't really know what's next.

My two fav guys at Paribas Indian Wells

Good weekend, capped by dinner with Bong & Carolina

Day 123 Chemo #7

So! 123, eh that's a pretty big number. Guess it means we've gone quite a long way. It does feel routine now, mechanically scheduled, going through the motions. I can't decide whether thats good or bad. Good that the predictability of it helps give order and sense; bad if only that illness dictates my daily agendas. Listening to NPR today, I chanced upon an interview with the rabbi author of "When bad things happen to good people". (See the transcript here.) If God is omnipotent, why does tragedy mercilessly perpetuate in all people of and of no faith? What is "fair"? The rabbi makes a point to say he believes that tragedies are not sent by God, but He sends the "strength and vision" that we need to overcome, and he sends the comfort and compassion that we need to keep going. An interesting perspective, but I really took it to heart. Sometimes you hear just what you crave at not a moment too soon.
On a tangent, kind people have been telling me that I'm courageous or "amazing", but really, it's so much easier to strong when I have so so so much love and support from everyone, my Wilbur, my family, my friends, and especially my God.
I'm quite done with my rambling for today. As Bong says "how are you still awake?"

Funny money

Just for kicks and giggles, I calculated my medical bills (sure signs of boredom).

Total billed to insurance for diagnosis and prep surgeries: $69,311.
Total after adjusted to contracted rates: $24,069

services may be reimbursed at only 1/3 of billed rate!!!

Total after insurance reimbursement: $16,523

insurance saved me $52,788

Total after discounts and financial aid: $10,335

charity has cut my bill by 40%

Not to worry, the final bills haven't been processed, and I doubt the final cost will be as much as 10k. It's just pretty amazing to see what I racked up in October through November 2009!!

PS Since chemo started, costs have been $8500 for Dec - Feb. My new insurance covers all that yay

Re Days 111-116

Love is ... "built of a foundation of commitment, fortified by scaffolds of trust, and made beautiful by friendship."

Darling, you're my fortress -- you know that. Because of your will and resolve and spirit and all around betterness, I can whistle a happy tune.

Love is ... "the ability to sacrifice your own well-being for the happiness and well-being of another"

And, I love your idealism; you're my half full to my half empty. It's cute. My crisis is how can I preserve these ideals and protect you from being as jaded?

Remember these quotes? It's from our pre-marriage counseling when we had to prioritize the central attibutes of love. Anyway, I don't think we've so far deviated much from our own definitions. Maybe it was the crab cakes or all that abstract art we took in, but Day 116 was tough conversation.

Some of what was said includes

this isn't our life on hold, this is our life

happily ever after is for fairy tales

setting such a high bar leads to frustration when it can't be achieved

the road is winding and sometimes treacherous but we'll do it together

Have a little more patience, love. I do want to preface this by reminding you that maybe I'm more used to life's pratfalls. It's more natural to me to handle weird stuff, and it's definitely ingrained in my character. You were the 小王子, remember? But what you have is the meter that I'm missing. You know what is good and what is right, what to strive for and you only accept the best. You remind me that through all of this, there is hope in the world.

Day before chemo #6

At the doctor's office today, everything went as usual. I showed him these two odd pigmentations that have been present and growing since second cycle, one under my left thumb nail and the other on the pad of my right forefinger. He says it's "kinda weird". Awesome. Anyway, the plan is to continue neupogen as planned, no concessions to me. The only new info is that we'll do CT c/sc contrast after fourth cycle and PET/CT after radiation. I ask him why; he says although PET is the gold standard, CT can give sufficient progress info at that point mainly because the treatment plan is still continued. When treatment ends, then we'll do PET. It's news to me, but if it means less radioactive tracer, it's good news.

Health Insurance for the Invincible

Insurance -- one of the biggest problems to face us when starting down the road of evaluation and diagnosis. I had this awesome insurance that was $50 a month, $1000 deductible PPO, 3 million lifetime maximum. Sounds incredible, right? It's the shining light that provides you what was out of reach, especially for a broke student or a debt crippled new grad. And you're like hey, I'm healthy, nothing will happen. Of course, stuff happens. When you least expect it. And that's when in movies it goes "Then, something went terrible wrong". The problem was that nothing met the deductible: no doctors visits, no blood tests, no scans, nothing short of major surgery, emergency, in-hospital catastrophes. There's no blockbuster hero here to tear up major bad guy bum. In fact, it got worse before it got better. Not really sure what the initial testing showed, I weighed the cost of paying out of pocket versus springing for upgraded coverage. The mark up for better stuff? About 5 times more than currently paid premium. And the dumbest thing ever is that I trusted my primary care doctor's office when they said my insurance would help with some costs. So naive. (What I should have done is call the insurance company directly.) By the time I realized this was skewering me financially, a better plan was denied because my health status was not "normal". In the end, I got Lucky, being shepherded into Wilbur's group coverage because of the fact that I had preexisting coverage. I just love an ironic ending. Anyway, it makes me AAAAAAAANGRY (with 8 A's) when people mention this type of insurance. Just say no!

p.s. check out who else is aaaaaaaangry. "I went through floor mats, foo!"

Re Days 103-05

Not affected? Not changed? Maybe, but you gotta look a little closer, like those "spot the differences" images in Highlights magazines. On Sunday we visited mega church Harvest then hit a sold out showing of "Shutter Island". It was cool, like Wilbur was my personal bodyguard-slash-bouncer. He can hear a cough from two pews away! Like his bacteria radar perks up and his eyes zoom in to give a death stare to the unwitting perpetrator. His body becomes a shield against wannabe germ invaders. Every little sneeze or sniffle sets him on high alert. Oh Wilbur, it's our day off and you're still working!

MDs, help!

I just got my last injection of neupogen, but it was the most memorable shot ever in the history of ouchness. Taking the dose right out of the fridge, label instructions say to keep it 36F-46F, nurse kristy apologized before jamming it in my tender arm. !!! She said it was due to the cold needle. A study in the Clinical Journal of Pain mentioned testing influenza injections cold vs room temp with no discernable effects and with the intent to study cold needles as a form of analgesia. What?! Is this nurse pulling my tail?

Ed. note: it's cold drug solution, not cold needle that causes nocioceptor disaster

random video of the day

beautifully spoken
http://www.theroot.com/multimedia/meet-faces-america-dr-mehmet-oz
watch the whole series if you're a seeker of your roots

go for the gold

On good days, life is remarkably normal. This day is one of those rarities; I feel better today than I have in about two weeks. It's amazing, liberating. Think about that moment when you know your cold or flu has lifted, and suddenly all of the nothings you take for granted are so charming -- no achyness, no dizziness, no sick feeling. Even my hair has reached a temporary detente with my scalp. It's clinging on for dear life.
Having gone through the last three treatments on a timely schedule, it's a great relief to be halfway to the finish. But also because the biweekly schedule is one that allows for just enough time for the white blood cell count to recover from its nadir, it's tantamount to letting my body reclaim its balance just enough to knock it back down. On these good days, I exercise, eat right, and try to get myself as strong as possible. I know I can power through the next three (incredible that it's so few!) treatments. It makes me consider those cancer survivors who do months and years of chemo and marvel at their perseverence. I don't know if I could handle any more without a tangible goal in sight.
These days, Wilbur and I are constantly speaking in future tense -- when we get out of this desert ... where do you want to live next? what job will you be at? when will we have kids? That definitely gives a firm grip on the next step.
Wishing you Hope, Dreams, and Faith

p.s. lunch menu coming up today - bo luc lac, (the shaking beef recipe from SF's Slanted Door. Oh, how I miss foodie restaurants!) which when wilbur says it, popo thinks he's saying bo good luck
p.p.s. recently i finished "The Boat" by Nam Le, short stories with voices from around the world, but including a story on the boat people. read it, it's haunting.

Can't believe the week is more than halfway over. So much stuff happened so quickly. Saturday was the day after chemo, so pretty chill. Cleaned the house for new year, always my favorite activity (I'm not even being sarcastic). Over time, the chemo is wearing me down, so I don't bounce back quite so well. Feeling tired and blimpy. Sunday, on the otherhand, was amazing. Slept all morning, then woke up to a surprise from my husband. Chocolate, flowers, monkey, and something pink; he really understands I need to feel like a girl again. We headed out to the local greek festival for lunch. It was small-town endearing, with a sea of white hair. Loukomades! Fried balls of dough drizzled with cinnamon, honey, and toasted nuts! Then slept all afternoon. Wilbur was so bored he beat Metal Gear Solid 4. V-Day dinner at Ruth's Chris. We were the only table in our section to get little confetti roses. Ha! Beat that, old people. Actually, watching these sweet old couples get all dressed up on their dates was really cute. Monday drove out to SG. So good to be home and so good to be surrounded by delicious, delicious food. Went to see Dr Lim at Cedars, who I highly recommend to anyone. Wilbur mocks me for being too clean and tells me to roll in the dirt. Return home with a tummy full of boba and (chicken) pho. Tuesday? LOST!!! Did you see all that light/dark/biblical symbolism? While monching on tang yuen (湯圓). Ahh, life is good. Wednesday, had to work, no time to read Lost blog on ew.com. Watched L Vonn and S White win gold. Thursday ... that reminds me, time to read Lost blog.

Oh happy day

Song stuck in my head all day
每條大街小巷 每個人的嘴裡 見面第一句話 就是恭喜恭喜 恭喜恭喜恭喜你呀 恭喜恭喜恭喜你 冬天一到盡頭真是好的消息 溫暖的春風 吹醒了大地 恭喜恭喜恭喜你呀恭喜恭喜恭喜你 恭喜恭喜恭喜你呀 恭喜恭喜恭喜你 皓皓冰雪溶解 眼看梅花吐蕊 慢慢花也活絡 聽到一聲雞啼 恭喜恭喜恭喜你呀 恭喜恭喜恭喜你 經過多少困難 經歷多少磨練多少心兒盼望 春天的消息 恭喜恭喜恭喜你呀恭喜恭喜恭喜你 恭喜恭喜恭喜你呀 恭喜恭喜恭喜你

Valentine's Day with my husband for the first time

Are my glasses on top of my head?

At Dr. Smith's office, the receptionist greeted me with a "There you are! We were just going to call you!" I was surprised, shocked, even. Wha??? Wasn't my appointment at 11:20? Oh, you're on the schedule for 10:20. Silly me. The front desk girl tossed off a breezy "Blame it on chemo brain."

Indeed? How PC. Chemo brain is a woefully named phenomenon many patients experience after cancer treatment, including problems with concentrating, multitasking, memory, and word retrieval. Some 15% have lasting effects even after treatment ends. Bumfart! Shazaam! And other expletives my addled brain comes up with. The most dire comments hint that brain shrinkage can occur. I'm not just killing cancer cells, I'm killing brain cells! I'm not just going bald, I'm going blond! (I keed, I keed)

I ponder deeply ... if whether this is what's feeding my sudden fascination with "The real housewives of orange county" or if this solves my new mysterious propensity of writing shopping lists then misplacing the list then leaving the store without buying what I needed. Bread! How difficult it is to remember 'bread'!!
New evidence of epic brain fail: I took the Census test, where the questions were like "Put these dates in chronological order" or "Count how many houses are on route from Spot A to Spot B." And I missed one. Out of 28. Which I can't even calculate what percentage that is. Now to put this in perspective, Wiggin took her super hard medical school pharmacology test. And missed one. See??

This is the most nonsensical story I've heard about, read and be scared!!

"Another patient, Patrick, a diagnostic radiologist treated for non-Hodgkin’s lymphoma at age 58, had to quit his job when he realized he was making mistakes. “I would lose my place and have to go back and start over with an exam,” he said. “I tried to explain a procedure to a patient and I got very confused.” At the supermarket, Patrick and his wife put groceries in the car, then he drove off without her. He forgot pots on the stove until the smoke detector went off. Upset by the loss of his former self, he contemplated suicide. "
http://www.nytimes.com/2009/08/04/health/04brod.html

Haha he ditched his wife at the market. And got away with blaming it on chemo brain!! Hmm this could come in handy ...

Help! If it's a matter of inevitability, maybe I could try to smarten myself before I dumben. I need a brain gym, be it Kumon, sudoku, mah jong, Smart Water!

Now, where did I put my glasses? ...

True dat, mama

Reading something the other day that rang true:
Woe to those who are wise in their own eyes and clever in their own sight (Isaiah 5:21).

There isn't a day that goes by that doesn't hold its own lesson. Sometimes I get a little self-absorbed when it comes to treatment and etc, and get wrapped in my own head, mince on words, and brush off good intentions. I suppose that means I'm getting a wee too full of myself, glorifying the status of suffering in silence. In effect, refusing help because I can do it on my own. Sorry, just a matter of habit. I think of all the people who want to help me so badly, and I'm just marginalizing them.
In any case, who am I to assume that I've got it all figured out?

Was lectured by mom about something the other day that rang true:
If nothing else, consider that if I am not trying everything in my power to heal this illness, I may regret. Especially, heal if not for mine then for my husband's sake, because if I continue to be sick for many years, I will be the cause of his hardship and 辛苦.

master chef haiku

filet, potatoes
brother and sister cooking
on superbowl's eve

Beef, it's what's for dinner

(Ed. note: 2nd version, due to unintentional page refresh lacking ctrl+c)

Excuse me, beefatarians, this may pain you: i don't beef. Chateaubriand, double-doubles, kalbi, french onion soup, anything that smacks of bovine, I just don't eat. And I haven't eaten for ... nearly two decades. Until mama stepped in. Mama lovingly cooks beef dishes, ones that Wilbur gives thumbs up to, and expects her daughter/patient to eat every bite. The horror. I chug down each chewy juicy meatiness, rather than let it macerate on my taste buds. But I swallow it like it was my pride. I acted rude, boorish, mercilessly disdainful, and it wasn't even successful! I still have to eat beef. Why? Because the people I love do everything in their power to care for me, I show my appreciation: I suppress the gag reflex and open my palate with a grateful heart.

Re: Day 82-84

Through three years of dating, one year of engagement, 8 months of marriage, I have never known who my husband truly is. I always joke that I understand him 95%, whereas he understands me 59%. Now I discover, my husband is an onion. Or Trident gum. In any case, this boy's got layers!

Wrapping up 2nd Cycle

Just had chemo yesterday at 9. Slept through chemo until fellow patient started a loud conversation about bowel movements. Came home and slept until 4! My aftereffects are largely regulated by this supplement wun-yi (see previous post). I've skipped it for the the former two weeks and taken it for the latter two weeks. So it doesn't help my white counts, but it makes me feel like chemo didn't even happen. For example, today I feel pretty good. No nausea, just a metallic mouth taste. Looks like it's gonna be a nice weekend. This will be good for the start of the next cycle too, which will overlap with Chinese New Year/Valentine's Day. The only different plan is for 5 days of neupogen. So not looking forward to that. Plus, that will make working really difficult to schedule.

Pink Cadillac

I could sell makeup. Go door to door, give facials, makeovers, all that sounds pretty fun and girly. I mean, I could, but give up my day job -- after our boss Dr. Guss introduces me as "the wife of the best optometrist west and east of the San Joaquin Valley"? That moment made me miss my endless hours in the office more than ever. If anything, being married to someone in the same field makes me super pumped about my job. Being able to come home and recount all the mysterious and wonderful things our patients say that school did not and could not prepare us for, being able to debate whether congenital syphilis can cause unilateral salt-and-pepper fundus (yea, so what if that was nerdy), and just being able to speak the same language is great and surprisingly not boring. So, do I want to be known as "the wife of " or do I want to "be"? I think you know the answer. Anyway, if I were to start a new job, it would be on the Food Network "Worst Cooks in America." Cross your fingers to see me on TV next season haha :P

Success in normal

This past weekend was by and large way more normal than any days I've had in a long time. Compared to last week, when I was first neutropenic and agoraphobic, then sick and achy with a cold; yesterday, tennis with Wilbur 6-1 (harhar!), baked him some cookies (from scratch! unburnt! he ate 5! 5!!), today, productive, energetic, ran easily, then I finished drawing this ...

@ Palm Springs Tram

We got a little cabin fever, so we went out for some fresh air

It's finally looking like sunshine here in the desert. Rain has been steady all night and all morning, making it treacherous driving outside (someone thought 'oh, storm drains smorm plains, it's the desert'). I actually like being at home. I'm ... adapting. I bake (dry as sand) bread, my husband comes home for home cooked (dubiously edible) lunches, I tidy up, I shimmy: I'm freakin Mrs. C! (Although I'd rather be Betty Draper, minus the vengeful adultery). I feel a 70% better than I did two days ago. White cell count jumped from 2.2 to 10.3 after 3 days of neupogen (hence the excruciating my-skeleton-is-becoming-adamantium feeling). Neupogen: no more! Antibiotics, antifungals, antivirals: discontinued! Headache: gone! Sniffles: mild! I'm particularly happy too because, thanks to doc, my second opinion is going to be at Cedars-Sinai (ranked 44 in the nation for cancer per US N&WR) although City of Hope is out of network. Can't wait to see me some hot mess celebs!
Random website of the day: http://www.postcardsfromyomomma.com/highest-rated/
Thanks to Wilbur's dad, the mystery is solved. Da tou tsai is very good!

Busy day!

7:15 - awake now
8:00 - liking laura's e-card
8:05 - looking up the name of this vegetable

9:15 - will someone please run to ranch 99 and find out what this is so i can eat it!

9:45 - at onc's office for blood draw and neupogen

10:20 - shopping! for groceries, but shopping nonetheless

11:00 - organize papers for tax season. yes, organize papers for tax season.

11:25 - sulking, feeling robbed by govmt taxes

11:55 - lunch with wilbur at mamacita's. no pictures, we ate e v e r y t h i n g

1:00 - continuing education zzz ...

2:00~ - putter 'round apartment

3:45 - what?! tornado in orange county

http://www.huffingtonpost.com/2010/01/19/orange-county-tornado-str_n_428872.html

4:09 - watch macgruber trailer. val kilmer let himself goooo

4:45 - still life of mutant citrus

4:46 - did you know lenscrafters cut down all double doctor days?
5:00 - wilbur's home!

An earthquake rattled through the early morning, catching me mid-dream. It was just a small one, less than a 4 where we live. In seconds it was over, with my sleepy husband reassuring me with his hand in mine. I was kept awake with flashes of Haiti, worried about the safety of my family in far off cities. Mama had just returned to her house the previous afternoon. She left because she had a cold and was so concerned about the risk of infecting me, she rushed off without a kiss or hug goodbye.
Today is the first day I don't feel like myself. Wilbur is always concerned, always watching: counting how many bites of food I take, reminding me to take my medications, constantly feeling my forehead and taking my temperature, cleaning everything in sight with his Lysol wipes. I feel like a burden, even if Wilbur protests that I am not. He puts on his smile and tells me jokes and makes up stories to tell me. I know he tries hard to keep me cheered up. We can't do much other than stay home today, and we're bored. I feel that today is more different than ever before. I'm weak, invalid, and everyone just worries and protects me. I looked in the mirror and didn't recognize myself.

Battle Scars

Just a note on the effects of bleomycin: This is a picture of my right forearm, taken a few days ago. On my first day of treatment, December 9th, I was given a small test dose of bleo to check for allergic reaction. No swelling, but I was left with this red welt. There is a small straight line (shown here, horizontal) on the scar which is the mark left by the needle. I shudder to think about the effects this drug is having inside my body when it is capable of leaving such a toxic stain on my skin.

It's nothing compared to the golf scars Wilbur has!!!

Actually, doc decided to take me off bleo completely. He notes my absolute neutrophil count has dropped to 0.5 x 10e3 /uL. In order to continue chemo, we must get that number higher by administering Neupogen. As you may remember, Neup and bleo together increase risk of pulmonary side effects. Findings were shown in 26% of the sample population, versus just 9% of those only taking bleomycin. In older patients 55+, Neup and bleo can reduce the 5-year mortality rate from 90% to 60%. Therefore, no more bleo. Now I'm on AVD for 4-6 cycles; that means a possibility of 2 more months of treatment plus more radiation than originally planned. Of course I'm prepared to continue treatment without delay, so I'm ready for this new plan of action.

I feel blessed that my doctors are willing to ask for help and consult specialists when its needed. Humility in MDs, oh my! (Just kidding, MDs). There is some debate as to my treatment, since most patients with healthy bone marrow should be able to reach an absolute neutrophil count of 1.5 x 10e3/uL even at the nadir of white cell loss. They have consulted with prominent hematologists at UCSD, Stanford, and Yale, and they are referring me to a second opinion at City of Hope.

On a side note, as a clinician in a patient's shoes, I'm more comfortable asking for a second opinion. But you all, you must never hesitate! If you're unsure about a diagnosis or treatment, it's ok to collect more information.

Here's a chart showing my white blood cell, absolute neutrophil (granulocyte), and red blood cell levels since I started getting blood tests. Remember, first cycle was second week of December.

Can you tell when the Neupogen was administered?

what day is it?

WBCs are against me again. Doctor's appointment tomorrow to discuss ... what? What new information could he possibly tell me? I'll show him this article http://annonc.oxfordjournals.org/cgi.../full/18/2/376 about the relative low incidence of febrile neutropenia when continuing ABVD despite low absolute neutrophil count.

Knit. Pass first stitch over second. Repeat

Such is my Monday, while everyone is busy at work, since I left driver's license in Wilbur's car. Stuck at home, I've watched every channel on direct tv and while watching HGTV was inspired to finally finish my churlish scarf project. The project, not the scarf! Thanks for teaching me, Wiggin. After hard core knitting, my fingers a blur, I finally learned how to cast off. See this site, whose address expresses how I feel http://www.knittinghelp.com/.
And ... success!! granny style

It's pretty gnarly, Wilbur said he'd wear it (so sweet) ... but I rather like it as a headwrap

Day 60

Home! And not a moment too soon. Wilbur had ready a night of dinner and entertainment. It was a good night.

Day 58

Reporting from SGV -- Being at mama's house is just like old times. It's comfy, cozy, and they can infantalize me as much as they want to. I'm here to number one, allow my family to keep their obsessive, collective eye on me while they carry on life as normal, and number two, to let my husband have some time alone and relief from his caretaker duties. He can kick back, watch football, and most importantly, be relieved of his gastronomic suffering. (Apparently everyone covertly sneaks junk food when I'm not on watch, as proven by mama's refrigerator full of (Armenian) pastries.) Solitude shows us what should be, right? I've take for granted my hermiting gives me the chance to reflect and rejuvenate. Freedom from outside demands, dissipation of any sense of urgency or commitment to anything other than what-I-want-right-now. I forgot that my husband might need that too. He may or may not feel this way: although love involves a sense of duty, if that duty becomes a chore, love can quickly wither away into resentment. As selfless as he's been, he'd be saint-like if he could continue on without time to be un-selfless. But while he gets to be king of his castle, lucky me gets to be coddled by the fam. My popo has cooked so much for me to eat -- and how can I say 'no' to popo? -- so much that I fear Wilbur may not recognize me when we meet again. Plum candy, savory green bean, stir fried mii fun, yum!! Thankfully, I have so many people who love me and want to take care of me the best way they know how. I'm really a girl with a life that's one in a million.

Day 54

Well, today is Day 4 after chemo administration – historically my worst symptomatic day. So far, despite extra follicles in the drain and a tiny swell of nausea this morning, I feel better than I did the first round of chemo. I’m running a mini experiment with an herbal supplement made with yun-zhi mushroom extract (coriolus versicolor). It’s popular in eastern medicine; this bottle in particular is from Hong Kong. It helped my Uncle Homer, then taking the remedy for non-Hodgkin’s, to ease through treatment, according to my Auntie Betty. 1200mg a day for cancer inhibiting properties, 3600mg a day for concurrent use with chemotherapy. All I know about this extract is that it contains compounds which are chemically similar to two proteoglycans, polysaccharide K and polysaccharide peptide, which have been systematically studied in human cancer. Some studies have found the psk and psp to be effective in certain types of cancer, however I am more focused on the findings that say psk and psp have minimal side effects and do not interfere with chemo treatment. Therefore, having started yun-zhi supplements 5 days ago and not having taken it during former treatment, I’ll try to see if there are any tangible effects. Chiefly, if my white blood cell and neutrophil counts are improved as compared to the last cycle and I won’t have to delay treatment*, I’ll continue to take this.

*On day 52, my oncologist reviewed the potential side effects of Neupogen (the growth hormone for inducing white blood cells) combined with bleomycin (one of the more toxic chemo drugs) and decided to quit the Neupogen. This means I must wait until my white cell count is high enough before treatment can continue. An informed decision better late than never, I believe. Sometimes I feel like this when I call my patients with a follow up; hope they are as accepting of it as I am!

Source: http://www.current-oncology.com/index.php/oncology/article/view/147/209