Thursday, June 01, 2006

"Weak" 7

The last week has been rather chill. Erica's energy level has been extremely low which limits our daily activities. Anna came to visit last weekend and joined the tradition of cooking a specialty for us! We primarily stayed in, watched movies, and ate. Well, I ate. Erica has put me on her eating regimen of consuming every few hours only to leave me hanging since she no longer has an appetite! We play the game of 'what sounds good?' to be met by the newly popular answer of 'nothing'. It frustrates her to be hungry and have nothing taste good or moreover, upset her stomach. I have managed to keep breakfast a decent constant for her with an overwhelming supply of bacon, sausage, and eggs. Her weight is on a steady decline weighing in at a whopping 94lbs. last hospital visit! However, looking at her body, she maintains the appearance of many models--seriously. Big boobs, small everything else. We recently saw photos of Nicole Richie online who seemed to resemble Erica, but she intentionally looks emaciated. (by intentionally, I mean, she doesn't have cancer... as far as the public knows.) We've come to decide that our bodies naturally rest at a weight that's comfortable for it, allowing us to function at our best. For some, this weight may seem bigger than society deems appropriate, but our new understanding begs the question: who would know better the healthy state of your body than your body? She eagerly awaits the day that she can look in the mirror and say again, "I'm happy with my weight."

Sunday is Erica's 27th birthday and we are having a little BBQ to celebrate! We tend to make plans for each day, but stipulate that we may not actually make the date set if Erica lacks the energy. For the most part, we don't keep our plans. This technique is bitter-sweet as it gives her something to look forward to, but causes her to feel disappointment if we cancel. She has tried to push herself to keep appointments only to lay on the nearest couch or chair wishing she didn't leave the comfort of her bed. So, with this said, we hope that the concept of a BBQ will be the best option: at home, very casual, and a relaxed environment.

I think it may be worth while to explain Erica's treatment plan (briefly, don't worry!) so as to give you an idea of what we're up against. She is currently in the third phase of a four phase treatment plan/protocol. This third phase lasts for thirty weeks. In this, there are ten 3-week cycles that repeat identically. The first week consists of the most drug exposure, tapering off in the second week, and the third week has only one medication. Ideally, she would feel progressively better but not so. She has roughly 1 1/2 weeks of 'not so good' followed by 1 1/2 weeks of 'better'. She is currently in the 7th week of the 30 week phase and desperately wants it to be over. The title of this period is called 'Intensification' for a good reason.... The fourth phase, Maintenance, continues until the two-year mark of her going into remission: March 9, 2008. More on the fourth phase when we reach that point....

During this week's regular visit to the hospital, her counts were too low to do all of the week 1 chemo, so they just did one of the three chemo treatments. In addition, because of low hermatocrit levels, they gave her two blood infusions, which should have made her feel more energized. Unfortunately, that theory hasn't panned out; in fact, she crashed in her bed when we got home from the hospital and refused to rise until mid-afternoon the next day. We think this unexpected and prolonged fatigue and weakness is related to some kind of bug in her intestine making her constantly uncomfortable and making calorie absorbsion clearly unattainable. Sorry for all the bad news, but we were expecting a little respite from the torrent of afflictions last week and this week, and are sort of pissed off that the maladies morph but don't let up. We are still giggling and trying to make the best of things though and Erica is definitely looking forward to her visitors this coming weekend.

Lastly, the Erica Courage bracelets have been ordered!! Sorry for the delay---I admit to dropping the ball on this one. However, they are ordered & will arrive in about a week and a half... If anyone would like one or more, please email me at and specify (1) how many bracelets in either youth or adult sizes; (2) your address where I should mail them; and (3) to keep funds easiest, just send the $5 to Erica's PayPal account found at . Questions? >>email me. :)

[in the photo, we are at Jamaica Pond where Lola got to swim for the first time EVER and that is the famous Kent! he is a wonderful friend here in Boston who never leaves us wanting for companionship or Duncan Donuts.]


V-Omega said...

Jaci, your love and devotion to your sister is amazing. You are a saint.

Erica, I can't find any original words of support --it's all been said: "We love you; Your spirit is indomitable; We know you can do it!"-- and so I feel silly repeating it. (not to dissuade anyone from expressing these important sentiments!) Nevertheless, I would point out the unifying theme is that WE believe in YOU. I just hope you find strength in knowing that so many people are rooting for you on this marathon.



marie said...


I would like to be the first to wish you a Happy Birthday (the first via blog comment, anyway)! I know it's early but I like winning :) I hope it's a wonderful day - Annie arrives tomorrow too, and we can't wait to come out to see you...

Love you much,

Greg Genco said...

Hey Erica,
Happy Birthday!!!!!
Hope you have a great day and even better year!
I am off to Peru for three weeks on Tues. Let me know if there's anything would like from down there. In fact, let me know what they have down there because I dont have much of a clue. Should be an interesting trip.
Omedeto and adios,

TokyoGyoza said...

Hey Erica,

Happy birthday!!!

hope you are having a wonderful day!!! and have some cake for me too!!!


amber said...

Ms. Erica -
I hope you have a wonderful day today! I know you will be surrounded by family and friends who love you very much. My fingers are crossed that your tummy will give you a break and you will be able to enjoy some delicious birthday treats!!
Sam and I send all our love - keep up the good work! Happy Birthday Erica.
Amber and Sam Harrison

P.S. Jaci - you are amazing. Your positive spirit is really just incredible. Thanks for all the updates, and for taking such good care of our girl.

TheDarkerUma said...

happy birthday love.

artineh said...

Happy birthday, Erica! Hope you had fun at the bbq.

Here's to 27 being a much better year!

Erik said...

happy belated birthday!

sorry my birthday wish is belated, but as far as birthdays go, my feeling is that one should celebrate their birthday MONTH, not just their their birthday DAY.

at least that's what i'm always telling people when i'm like, "it's my birthday" and they're like "you're birthday was three weeks ago."

it's all about the birthday MONTH.

june's about you.

love ya,

chelle said...

ok seriously, how cute are you 3?

a very happy birthday to you!!! i know i don't post often, but i read and think about you everyday.

and the birthday month? sounds like a good idea. you should see how many time you can eat bday cake in june or something equally as silly. or fall asleep with your party hat on ;)

much love,