Day Zero

Our little hero has weathered the past few days of chemo in preparation for her transplant with little more than some tiredness as a result. All things considered, she has had an excellent preparatory period leading up to today, Day Zero.

Day Zero is a special day in many ways. Many people consider this a new birthday. This is the day she will be given a new immune system and will start the process of taking on a new blood type (if the donor’s type is different than Erica’s). The start of a new life. So, remember April 29th!!! (and June 4th too – her original birthday).

There have been some sobering, but also thankful moments as Day Zero has approached. For one, the nurses have reminded Erica of the possible side effects of her radiation and chemo treatment that will not be able to be fought off by her immune system, because she will have none until her white blood cell counts go up somewhere in between Day 14 and 21. This was all instigated by what I call the Mouth Sore Secretion Suction System (MOSSESS, not too unlike what a dentist would use) that was introduced to her last night. Mouth sores and dry skin/rashes are common following these procedures and can be quite unpleasant. These side effects have had her quite down in the past 24 hours.

What needs to be remembered, and something one of her nurses reminded her of last night, is that there are some people who don’t get donors, so that is why Day Zero, although a start of some difficult times, is mostly a cause for celebration. This is the chance to get her life back. The cause of hope for a promising future. So, if anything celebrate this day for Erica!

Day Zero officially began at 6:00 pm on the dot (so all you astrology buffs can check the exact time)… The doctors came in with what looked like a Bloody Mary cocktail mix in a bag and hooked it up to one of her lines. The “transplant” takes place like a blood transfusion. The initial flow was set for an hour, but because she had no immediate adverse reaction (great!), they increased the flow and she had sucked it dry within 45 minutes. Having taken some meds prior to the transplant, she slept soundly throughout the procedure and continues to sleep soundly, now over two hours after the transplant, with still no reactions. Now it’s just keeping tabs on her and making sure she doesn’t get any fevers or itching…

I wish I could tell you what kind of spirits she was in, but she’s been awake about an hour the entire day. Probably for the best.

Happy Birthday Erica!!!

Four eyes!

For some odd reason Erica has always wanted glasses, and this week, her dream finally came true. Either as a result of four days of full body radiation, or as a result of a high-dose of anti-nausea medication, Erica has been experiencing very blurry vision this past week. When we were poking around the cancer center boutique yesterday she discovered that the glasses helped correct her vision and she couldn't have been happier ;) Erica weathered the radiation fairly well and had just a few minor complications that were easily treated.

It is now noon on Saturday afternoon and she is all checked in to E1, the Bone Marrow Transplant ward of Stanford Hospital. Currently she is sharing a room with another woman (no fun) but will be moved on Sunday or Monday when her counts drop so much that it will no longer be safe for her to share a room. At 2:00 today she will receive the first of two doses of a high-dose chemo called Cytoxin (so lethel that it has to be stored in its own locked room), on Monday she will rest, and on Tuesday she will have the transplant. She is doing as well as can be expected and still feels pretty strong and inexplicably looks even prettier with glasses. We will keep you all posted and let you know how the next few days go.

Meet Ernie and Stan

Ernie stands about 1.5 feet tall and is kind of rigid in nature, not much unlike his namesake from Sesame Street. Bert is missing, but that’s okay, because I don’t think Erica could deal with having two such friends. Just too much weight to drag around. Bert’s lack of presence, however, has translated into Ernie becoming more temperamental and Erica has to keep him on a short leash.

Ernie is Erica’s saline bag. Yes, he very much looks like a wheelie that one would drag around an airport, but this bag will be a permanent fixture at Erica’s side until Saturday, keeping her hydrated during the radiation process, which started this morning and ends on Friday.

Erica will have eleven doses of radiation during the next four days. Each of these lasts a maximum of seven minutes. And this is where we need to introduce Stan. While little Ernie gets a bit grouchy from time to time and tugs at Erica’s catheter, Stan is just plain mean. Large and in charge, Stan looms huge on Erica’s horizon, staring at her right in the face.

Big, bad Stan is the radiation machine that irradiates Erica three times a day. As you can see above, he’s not pretty and does not get any points for being a nice guy. But, as we all know Erica, Stan is really not the top dog. Whilst large, he is still merely Erica’s younger, oafish step-brother, in a manner of speaking, zapping away the little nasties that are in her marrow. So there is no confusion, Erica has already sent him a message about who is boss.

The most emotional part of today was, at 7:30 am this morning, when they strapped Erica into the booth for the first radiation dose of the day. There was no worse feeling than to see this beautiful young woman being submitted to something as dreadful as radiation, even if for the greater good, without being able to do as much as lift a finger in aid but for a final little, blown kiss. The almost draconian setup of the booth, with straps, levers, hanging pieces of lead, made it appear that not much has advanced since Marie Curie carried out experiments with radiography almost a century ago. That, or she was going to be privy to torture techniques from the Middle Ages. But, the professionalism and knowledge of the radiation therapy staff at the Stanford Cancer Center helped prove that we are now in the 21st Century.

Those first seven minutes were some of the longest of my life, watching her on a video camera from another room. And this was a pittance of how long it must have been for Erica, holding herself up straight reminding Stan who was boss.

Today Erica has faced three doses of radiation. And has confronted each with a strength and grace that would make a bamboo proud. To boot, according to one nurse, she’s the cutest patient they have right now. But, we already knew that.

Three down and eight to go. And Ernie and Stan are watching her back.

"Make life go away."

These were the first words uttered by Erica as she and I (Jamie) woke up at 5:00 this morning to get to the hospital for her port removal and catheter insertion. Another day of doctors and nurses and poking and prodding. There is no doubt that the girl is fed-up with this reality and who can blame her? She managed to have a few days of normalcy visiting friends in L.A. earlier this week, but now it’s back to life at Stanford Medical Center. The good news is that everything went very well, no complications at all. She is now back at her Mama’s house resting and awaiting the arrival of some friends for a low-key evening o’ fun.

As far as her schedule goes, she has two more days as a “free woman” as she describes it and then she heads to the hospital on Monday for radiation prep. Tuesday through Friday will be spent at the hospital undergoing full body radiation in preparation for the transplant. On Saturday she checks into the hospital for the transplant and starts receiving high doses of chemo for two days. Tuesday, April 29^th is BMT day. For those of you who aren’t aware, the actual transplant process is basically just a blood transfusion. Her BMT doc described it as “anti-climactic.” The time spent in the hospital post-transplant will be spent watching for signs of GVHD (graft versus host disease), watching for any signs of infection, getting her counts back up, and rebuilding her strength.

A quick update on visitors for the next 2-3 months. The general rule of thumb for post-transplant patients is to limit the number of visitors the patient has for the very critical 2-3 months post-transplant. It is recommended that Erica have a core team of caregivers and that other visits wait until after this period is over. No one can say exactly how long this will be, it is all dependent on how she is doing, but 2-3 months seems to be the number that keeps popping up. So, Judy, Jaci, Bess, myself and a few other close friends will be forming Team Erica and covering her round the clock. The reason the docs recommend against having more visitors is simply because with every new visitor, there is an increased risk of infection. It is a numbers game. For all those folks who were hoping to come visit Erica over the next couple months, my suggestion to you is SKYPE! Erica will have her computer and webcam in the hospital (we can’t promise she will always be up to using it) but it will be there to let her interact with everyone. For those of you who don’t have Skype, you can go to www.skype.com and download the free software. From there you just need to purchase a webcam available at any Best Buy or Circuit City.

As you can imagine Erica does not like the idea of not being able to see all of her family and friends that have stood by her, but she is the first to say that she is going to do whatever the doctors say and follow their instructions to a T. As soon as it is safe to start allowing other visitors we will let you all know. We will be blogging constantly and we are all available to chat on the phone if anyone would like more detailed updates. As soon as Erica is checked-in to her new “suite” at the hospital, we will post her new mailing address. Please, please, please send as many cards, letters, parcels as you like. She is a big fan of parcels. ;)

Identity Theft

Check out this story from Discovery Magazine.

The level of physical and mental anguish this man went through astounds me. It makes me so scared, so very very scared. This story also makes me uncharacteristically angry too. This man did nothing but love life and ALL (an all-too-familiar leukemia) beat him down. Do you cringe when you watch a movie and see senseless and prolonged violence? Eric Drew was walking along (whistling, no doubt), when a thug called Cancer pulled him into a dark alley and beat the shit out of him. Why? Why this senseless destruction?

I'm sorry if this offends you, your religion, your sense of purpose, but Cancer makes me convinced that we are just tiny inconsequential specks on this tiny inconsequential planet. When a houseplant becomes diseased and dies, we shrug and we toss it out.

I feel like a random casualty of cells, an entity too mundane to allege a destiny.

freedom of speech?

good stuff from the NY Times:

And only in America can a 46-year-old black man who just finished paying off his student loans be called “elitist,” a 60-year-old woman who with her husband has earned $100 million dollars call herself “middle class,” and a 71-year-old man who has received government paychecks his entire adult life call himself an “outsider.”

– Janice Hough, Palo Alto, Calif.

clarification

I met with my Bone Marrow Transplant doctor yesterday and we are "moving forward". There is another donor in mind, with the same level of mismatch as the one that fell through. We DO NOT yet have confirmation of this donor, but the medical team is optimistic that we can assume the donor will come through. Apparently, the donor has consented, but we're awaiting medical clearance. Or is it the reverse? Honestly, the state of limbo remains...

Something interesting we learned yesterday is that the U.S. Navy partly funds the National Marrow Donor Program and they conduct research too! An admiral's son died from leukemia after being exposed to Agent Orange while serving in Vietnam. In addition, there is some connection between the carcinogenic damage caused by our bombs and other international nefarious warfare tactics and the NMDP. So, apparently, when after 9/11 and planes were grounded, the military were the ones delivering bone marrow all around the world. My BMT Doc said that was the only time they were really worried about getting the actual donor specimen after the patient had already been "prepared" with radiation and chemotherapy.

We are moving forward. Still, I'm keeping my fingers crossed.

Update from Bess

Tuesday was Bone Marrow Transplant (BMT) 101 at Stanford Erica, Judy and I went to a class to learn more about transplants and get information regarding how to give her the best care when she leaves the hospital. (Erica cannot stop taking classes, she misses Fletcher too much!).

A few interesting facts we learned:

- Erica has to have her port removed and have a catheter put in on the other side of her chest. This will be done as an outpatient procedure prior to the BMT. Too bad because her port has not been a problem in the past.

- The day of her BMT is considered day zero. Today is -19 until her BMT. The day after her BMT will be Day 1. They call the BMT another "birthday." Like we need excuse for us to throw a party in a hospital!?! They don't know who they are dealing with. Instead of cake she gets an IV of "orangy/redish liquid" YUM! I guess we cannot bring in any candles either. We will figure out something. How about a pinata? Will security chase us out again!?

- When you come to visit both at the hospital and when she is home, you will be hosed down and bathed in purell. I am only slightly exaggerating. If you even think you have been around someone sick, you will have to wave from the street to get a glimpse of our gal. We will probably have masks for visitors and give you a duster to dust around! Antibacterial wipe anything you touch. Unlike the previous hospital stays, she will have visiting hours. 11 a.m. to 8 p.m. I will be keeping a calendar again. Please e-mail me and we can confirm visitors: ocken@stanford.edu.

- They recommend that she get out for walks. SPF 30 for everyone!

- Water rations? Not with Erica. They recommend that she drink 3 liters of water a day.

- She will be back on the low-microbial diet. Any suggestions for bland processed food? Send them our way. Have a favorite type of canned soup? Cannot live without a certain type of frozen food? Some canned fruit we missed that actually tastes good?

Not with any surprise, Erica continues to be out and about, has high spirits and is filming a documentary! Oh yes. TV wasn't enough for her. She is moving on. No surprise right? Nothing gets in her way!

Easter Eggs

Growing up, I was not the sort of girl who couldn't wait to have kids. In my teens, I wondered if having children was not an ultimately selfish act in our overcrowded world and felt sorry for the countless women who battle every day to balance their roles as mothers with their myriad other positions. I've never stopped thinking about those things, but I do remember when that fabled maternal clock started ticking- LOUD. This wasn't a faint and gentle tick-tock; I began to feel like Alice's white rabbit: "I'm late, I'm late, I'm late!" Or rather, I suddenly realized and still believe to this moment, that I didn't just want children- I wanted a lot of them. "Cheaper by the Dozen" and "Yours, Mine, & Ours"- cutest movies ever. Twins? Triplets? Bring them on. Bradjelina's tribe: could you make me more jealous?

My grandma passed away last November. She was a mother of five amazing intelligent and loving children. In Chinese style, she was respected and spoiled in her old age. I thought, how wonderful it must be to have so many children, both to care for you and to be able to watch them develop into unique and accomplished individuals. My sisters are two of the strongest most special relationships in my life; what might it have been like to have even more siblings to cherish?

In 2005, thanks to a grant from the Avery Foundation, I traveled in China learning about the Chinese concept of "luck". One of the things I did there was get my fortune read. My i ching expert was a blind man who learned the art and trade of fortune telling to be able to support himself through his disability. He told me several things that rang true at the time and I chose to believe him when he told me that I had four children in my life's projection: two girls, two boys. How perfectly marvelous.

So, when, during Easter week here in 2008, I was told that I had four little eggs in my ovaries, I felt sure that these were my fated progeny.

But first, another flashback: I remember well when I was in the Emergency Room in Boston being rushed into treatment and a doctor apologized to me saying, "you should know that the chemotherapy you are about to undergo will most likely prevent you from ever having children". As he hovered over my gurney speeding down the hallway, he explained briefly that some people have time to store eggs, embryos, or sperm, but that for me, there simply wasn't any time.

Despite this heartbreaking news, we took various hopeful precautions, such as using "the shot" to protect my ova as best as possible from the toxic medicines I was taking. Studies for my age group were not conclusive: I'm not quite old enough for premature menopause to be a given, not quite young enough to be optimistic about the number of years of normal cycles I might still have. So, common with so many other unknowns related to this illness and treatment, I subconsciously chose not to mourn over a trajedy as yet unconfirmed.

A couple of weeks ago, during my hospitalized induction period here at Stanford, a doctor casually mentioned, "well, you know how you're going to be infertile after the required full body radiation, right?" No, I had not known that. Here it was, conclusive, unavoidable. I had kept a little campfire of hope and a sense of destiny burning in my chest and I actually felt like the wind was knocked out of me as my chest and eyes burned and I tried not to cry. There are thousands of things that could/should go wrong with my body, but few that I've been told will, without a doubt, without a wisp of hope.

Wait, you're saying, didn't you just say something about four little Easter eggies? Way to follow this convoluted time schematic, reader.

Ah, so with one month between chemo and transplant to pray to the fertilities goddesses, I turned to the Fertility Clinic at Stanford and asked them to do whatever they could to stimulate/examine/collect/harvest/protect/freeze/store any chance I might be able to have children in the future. I gave myself shots to induce ovulation and must say it was the first time I've ever been so excited to feel bloating! Through ultrasound technology, my doctor saw two little follicles in each ovary and my heart soared.

Then, at my next appointment, Dr. W was very quiet as she examined the ultrasound screen. To me, it was merely smeared black and white static. But, her silence and persistent search told me all I needed to know. With all the tact and compassion I could have hoped for, she explained that my ovaries were just "tired" from all the chemo I'd had, that they were "calm" and those four small bundles of hope from a few days ago had not developed any further. "Tired". "Calm". Pointless. Dead. It's hard to be 28 and have dreams dead.


Of course, I will adopt. Adoption was something I'd felt called to long before cancer. But, still, just like that unavoidable mysterious inner clock, I can't help but feel this profound and unshakable sense of loss.

School Pride

From: Corey O'Hara [mailto:corey.ohara@gmail.com]

Sent: Thursday, April 03, 2008 1:21 PM

Dear President Bacow,

I want to thank you again for your support over the past week.

Yesterday's bone marrow drive was extraordinarily successful. The
national marrow registry representative, Betty, was particularly
impressed... a "good turn out" for a university drive is 70 people,
and she'd never seen anything like this. We registered 389 on the
spot, plus an extra 20 or so who will have to mail it in because we
ran out of the testing kits she had brought with her.

I guess no one had told Betty that Tufts is not your average
university. I think she figured it out soon enough, though. The
turnout and dedication she saw was so inspiring that on behalf of the
National Marrow Donor Program, she offered to cover all the costs of
testing, which would have been thousands of dollars. (The test costs
$52 per person.) We raised some money through individual donations,
but not nearly enough... Now the money we raised can go to Erica to
help her cover medical bills. (It won't go very far, but at least
it's something.) A lot of people deserve a lot of thanks!

THANK YOU.

I don't know what percentage of donors was non-Caucasian, but I have
to say, I was pleasantly surprised by how much support we had from
minority groups on campus, from the undergraduate student body, and
by the Asian community at Tufts in general. Students and faculty
came from all over. I recognized a lot of students from Friedman,
and I heard we even had a couple of veterinary students come in from
Grafton!

Erica was thrilled to hear of the support, and now we are all keeping
our fingers crossed that one of us is a good match. Thank you again,
and thank you to all of Tufts.

Yours,
Corey