Response

I hope I can use what experience and knowledge I was given to share with my community.  There's a lot of people out there who have cancer or have loved ones with cancer.  20% will be diagnosed with cancer, so they say.  I just wish I could comfort all of them. 


I was lucky; it never crossed my mind that God was responsible for my cancer. My first thought was, God, I need your help to get me through this. God, I need your help to get the ones who love me through this. After that uncertain and anxious time is safely past, I can see just how God answered my prayers.


When I received my diagnosis of Hodgkin’s lymphoma, I was two weeks beyond my 27th birthday. I was six months newly married. I was for eight months a baptized Christian. In this way, my foundation was set to propel me through doubt and despair. Being baptized, starting a new journey in faith, I was made bold in the belief that my God is good and He would not forsake me. I have often wondered “what if” – what would it have looked like had I not made that commitment to Christ? Yet my baptism and marriage went hand in hand. My husband, who led the way for me to become Christian, would always guide me forward. I thank God for the day I met the man who would be my partner and who would stay steadfast in the face of suffering in a fledgling marriage.

When taken into perspective, the situation during treatment just seemed to work out. We were blessed that Wilbur’s employer offered me health insurance. We happened to have moved away to an area with excellent and easily accessible medical care. Still, we were near enough to family so my mother could look after me. I lost my job, but that forced me to stay home and recuperate. We prayed, a lot. A lot of people prayed for us. I decided that whatever happened, God would provide a way. I won’t be afraid or discouraged. God will be with me wherever I go.

It took some patience to gain perspective on this experience.  Deep down I sought out to make it purposeful.  Maybe through this sort of affliction, I could grow stronger in character, to be a more faithful Christian, and to provide for others.  What I do understand is how suffering touched me and then how grace was shown to me.   
Actually, it was at Evergreen Baptist Church where I received my baptism. When I finally moved back to Evergreen after treatment, it struck me – I’m so lucky.

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.