Friday, June 23, 2006

Consider This

I have two things to offer for consideration. If you have ten honest moments to do nothing but wonder/ponder/philosophize. I know, on one hand you want to say Of course! who doesn't have ten minutes to just think?? But it's hard to find time just to meditate or contemplate in this hectic world, isn't it?

Anyway, query one:
Imagine that you're me and you've got about two years of "hard" ahead. No sugar-coating, chemo is difficult, saddening, painful; it sucks sucks sucks. However, there are the nebulous but likely silver linings: new appreciations, new clarities, new friends. So, what if doctors could put you in a coma for the duration of your treatment? You would sleep peacefully until March 2008 and wake up, weak but cancer and chemo free. Would you take the coma or the experience? (Not that I'm offered any such option, but it was something Evelyn and I were discussing the other day and I am curious what other people honestly would do.)

Numero Dos:
Remember back to when you were nine-years-old. You were probably in the 2nd or 3rd grade. Can you remember what you did for your ninth birthday or what you wanted for presents? I probably wanted some specific game or something for my bike or markers or something. Imagine a nine-year-old boy who, of his own idea and volition, asked his parents if he could request of his friends not to bring him presents to his birthday party, but to instead give a small donation to his "friend" who has leukemia. He composed a little letter explaining his wish and enclosed it with his colorful party invitations. And, after all his guests had left his pool party, when asked what his favorite part of the day had been, he said that it had been knowing that he helped someone else. I was/am still in such awe and admiration for Robert, Bess' little brother, and these actions he surprised me with a few weeks ago. I just wonder if even my current consideration of others could hold a candle; I know I wasn't that selfless at nine. Thought you might like to hear that story and ponder too.
Thank you Robert and all your good-hearted friends!!

Wednesday, June 14, 2006

Move over Marley and Me

So, I'm sitting up and blogging. This says a lot already so I'll try not to be too redundant. I started to feel stronger Sunday evening and Monday's steroids must be adding to the higher energy levels. I am so pleased to be more clear-headed and strong and hope it lasts for a while.

One thing we haven't mentioned but I'd like to share quickly is that Jaci has been taking Mandarin Chinese classes for six weeks! She always comes back in that good mood of one who has exercised their brain in an avenue that is clearly stimulating, relevant, and chosen. I am simply proud of her, using this time wisely, and practicing a skill that we plan to drop like a bomb on the Shanghai bargaining markets when I'm well enough to travel again.

Another thing we have done a bit of is origami. Thank you, Nate, for the suggestion. As it turns out, my good friends, Sandy and Marc, are marrying in October and desire 1001 origami cranes to decorate and bring good luck to their nuptials. They sent me paper and Jaci taught me how to fold and now... ahem, M & S... we are in need of more papers!

Have you ever heard of The Journey or Journeywork? It's sort of a scripted guided meditation take-off from Deeprak Chopra's ideas of cellular healing. In other words, it is the belief that all physical healing has a spiritual component and that you must harness and remember this aspect of your body if you really want to heal completely. I am drawn to the theories and agree that healing is a holistic process (as well as getting sick) and have found myself reading a lot of philosophical, natural remedy, and religious books of late.
Anyway, a few interesting occurrences... When my dear friend, Anna, was visiting a few weekends ago, she generously gave both Jaci and I the best massages we'd each ever had. She is a professional massage therapist as well as an informed and strong believer in some of the ideas I mentioned in the previous paragraph. My sister has had a cramp in her right calf, particularly painful when she attempted to flex her foot, for almost a year. She warned Anna not to do much there because it always hurts, no matter how gentle or careful the pressure. When Anna got there, she did a bit of mini-Journeywork with a very skeptical Jaci. She told Jaci that she had some emotional memory stuck in the muscles there and asked her to just acknowledge this and to consciously "let it go". Although, as I said, Jaci thought it sounded pretty strange, she did her best to "talk to her calf" in her mind and cannot explain how, but she enjoyed Anna's shiatsu long deep strokes into her normally hyper-sensitive leg. And now, to this day, her pain is completely gone.
Crazy, isn't it? If you're still interested in this stuff, one more thing. Anna, for my birthday, got me a Journey Session, meaning a counseling meeting with someone who has been to all of these conferences and guided scores of people through some pretty intense emotional levels to clear out some of the emotional memory junk that causes illness and/or prevents complete healing. This session was finally organized for yesterday and I was so thrilled that Jaci's calf experience spurred her to call my counselor and request a session too. It certainly is not just for someone with cancer or some other grave illness; it's for anyone who wants to heal or grow or explore themselves. I won't speak for Jaci's experience, but I found my 2.5 hour meditation to be very positive, something I'd never tried or experienced before, and instructive. To me, it just makes sense as a complementary medicine: to experience fully your emotions, to release negative sentiments and past blame (including the big one: self-forgiveness), and to just recognize the love that is at the core of yourself and those around you. Anyway, that, in a very small nutshell, is some of what Tuesday's session brought up for me. Thank you, Anna, and everyone who has sent me interesting, educational, and entertaining reading and material during this time of questions and way-too-much time on my hands.

I seriously thought this was going to be a short blog. Sorry for causing a trip to the optometrist to augment your contacts' prescription. You know, lasik is getting more and more affordable...

Two more things. First, the next batch of those yellow bracelets came in and we mailed all of them off today. If you haven't yet e-mailed Jaci your address or the amount you want though, we're waiting on that info! And, of course, if you want more, just let us know.

Secondly, and finally, explaining the blog title. Was it suspenseful having to wait until the end or just annoying?
I have found that our dog, Lola, and I have way too much in common to be simple coincidence. I have made a quick list of why I am now sure that we are not merely just in love but are actual kindred spirits:
1. We're nearly always hungry and thirsty, but we don't really like dry foods.
2. We're easily distracted by games and even more enamored with visitors.
3. We love the outdoors and exercise but mostly just stare longingly out our condo's windows.
4. We both have forearm markings from our IVs.
5. We both are waiting for our hair to grow back. (#4 & 5 are because of Lola's May 2nd spaying.)
6. We both adore Jaci, need her for many basic necessitities, and bug her all day long to give us more attention.
7. We both bathe infrequently.
8. Our sleeping postures are often remarkably quite similar, sprawling and uneven.
9. I think we both whine a lot, although I can't confirm for the same reasons.
10. We will both sit, shake, and roll over for bacon.

Sunday, June 11, 2006

week 9

Since Erica is having yet another sour week, I'll try to recap the past week or so events...

Beginning with her birthday BBQ! Anna and I perfected the barbeque menu when Artineh and her family came to visit the previous week and we broke in our new Weber. Jonathan grilled and everyone else lended a hand here and there.. She had a wonderful time---lots of laughs, smiles, drinks and games. Thanks to everyone who came!!

As for her hospital visit last Monday, she once again was unable to receive the chemo treatments since her counts were so low. Instead of being worried, the doctors all feel that this is "completely normal" (something we hear a lot and wonder exactly how that's possible since she isn't following protocol?? and if it's normal, why is there a protocol?) and simply means that the chemo given two weeks prior was so aggressive and worked so well that it is still fighting the leukemia---and subsequently all her other cells too. They said that the next time they are able to give her chemo, it will be a lower dosage. Ultimately, they will give her the most her body can handle in an effort to completely rid her of the disease. It makes sense, but we have to wonder, is she really handling the meds??

Since Erica is having a rollercoaster ride of side effects ranging from an insatiable appetite to being hungry but not having anything sound good, from diarrhea to constipation, from pain to lack of feeling in her limbs, from having chills to breaking out in sweats, dealing with energy levels... etc etc, we have begun to complain to her doctors. Ready for their suggestion?? Marinol, a.k.a. MaryJane! Granted it is pill form, but they have resorted to the good old weed! And Jamie and I have never laughed so much in our lives! Erica is HILARIOUS on this stuff!! She is so cute and funny and finally hungry! Unfortunately, she doesn't want to feel high all day as it lasted for a ridiculous eight hours so she stopped taking it after day 2. As much as Jamie and I were tempted to join her in Wonderland, we opted to remain responsible and do our best to keep her from tripping out more than necessary. She may try it again, but since her reality is already a drug-induced daze, she prefers to be as coherent as she can.

Hmm, what else...? Our days are pretty standard, minimal activities lately because she hasn't been able to get out of bed. Tomorrow is another hospital day, and if her counts are up for it, she will receive the chemo and steroids which may give her a bit of a boost. All in all, we giggle a lot, play many games, and read out loud daily. We are finally making it through our list of books that we have always meant to read but haven't had the time. Yea, we have lots to bitch about, but I think we're pretty lucky too.

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.]