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