24 Hours of Booty (pain)

My cousin Brett and his friend Lee are recovering from their hugely successful "24 hours of Booty" ride last weekend. So far the event has raised over $700k! Brett and Lee rode over 400 miles between the two of them. That is just crazy, people. Somehow Brett managed to find humor through the pain, because he had a lot of hilarious stories. At one point, they were passed by a guy in a Darth Vader costume waving his light saber: "We could hear his muffled voice through the mask/helmet yelling to his two friends that he coudn't see anything - they were helping him steer by yelling 'left! right!". We caught up to them about 1/2 mile later where a policeman had pulled them over. As we rode by we heard the cop saying 'absolutely not, that light saber does not count as a headlight!' "
There's a fuller description of the ridonculousness that ensued on Brett's blog.
In addition, my mom and my aunt, Char, took on the impressive challenge of cheering for most of the race (which was stopped briefly due to a massive storm). My mom was even interviewed by a local TV News Station. Here's the video:

I am so humbled by this huge gesture, which has been extremely motivating to me. I mean, if these guys can ride their bikes for almost 24 hours, through a massive storm, overnight, away from their families, after taking a red-eye... then I can suck it up and get through the next 2 months of treatment! I am actually hooked up to my chemo (shmeemo) right now, so we are underway. Enjoy some "Before" photos:


Brett... still able to walk

My aunt Char - modeling her Chemo Shmeemo T

Some "After" photos are coming soon!
love,
h (& c)

bone marrow registry

Chris and I wanted to share some information about bone marrow donation. Most of the other leukemia patients I've spoken with are having bone marrow transplants. I've been really lucky, since my doctor decided we won't need to do a transplant. But this is what we've learned about the BMT (bone marrow transplant) process for the Donor..

• Registry: Becoming a donor (through the National Marrow Donor Program) is much, much easier than we thought -- often with a just quick swab inside the cheek. You can actually sign up online, and they will send you the tissue-typing kit to do this at home.
• Donation: Although traditionally, bone marrow donation required surgery, a newer, less complicated procedure can obtain stem cells from your bloodstream. So they only need to draw some blood.
• The need: For the transplant to work, there needs to be a tissue type match. Surprisingly, 70% of patients do not have a match in their family. According to the NMDP, the most pressing need is for donors who are American Indian or Alaska Native, Asian, African American, Hispanic, Native Hawaiian or Pacific Islander, or multiple-race.

On a lighter note, it is day 2 of my "vacation" from the hospital, so I'm just laying here by the pool sipping my mojito. (that second part is actually a lie)
I did though wake up this morning with a bit of bedhead, which was so exciting. My hair is starting to grow back, and it's hilarious. So far, it is really sparse and fuzzy, and it's about 2 cm long. We assumed it would keep falling out, but it seems to be hanging on through these rounds of chemo. Hmmm... I guess we will see.

love,
h (& c)

Tue, July 24

Great news from my check-up yesterday. My lab results from my blood draw showed such good progress that I do not need to go back into the hospital for another check-up until Friday. That is 3 entire days off from the hospital -- my longest stint so far. Nice!
So I should still be on schedule for round 3 of consolidation chemo starting next Monday. Until then, I've been able to enjoy myself a bit more with my improved immune system. Stopped by my friend, Basak's "art show" for her new letterpress stationery company - small square design, and went to a little reunion with my ASK Learning friends up in the city.
Heard from my cousin, Brett, that he's ready for the 24 Hours of Booty bike ride this weekend in Charlotte, NC, and hey look, we're in the "Team Focus" spotlight! He and his friend Lee Ragsdale have raised about $15,000 so far for their team: Chemo Shmeemo... amazing!! As a sign of my support, I plan to eat 24 bowls of ice cream.


eating out with Chris and Carey (visiting us on biz trip)


pier in SF

Love,
h (& c)

Thur, July 19

Hi all,

I am at the hospital, mid-antibiotic infusion, and dramatically, we're having a blackout. Fascinating. I kind of thought hospitals would be like magical blackout-free places. I imagine this could be really problematic for some patients. (I must be pretty selfish, because my first thought was that this could make my IV drip take a lot longer.) So... hey lights are back on -- yeah, generator.

I have gotten a variety of blood products over the past 2 days, so my CBC (complete blood count) is improving. Most people can tell if their red blood cells are low, because you feel lethargic & fatigued, but I've really only noticed when walking uphill I get a bit winded. Actually, Chris and I went on a walk yesterday evening, and after getting blood transfusions for 2 days, I did feel more energetic.
But I also had a huge lunch yesterday, so that could not have hurt! It was certainly the highlight of my week to see my very favorite former clients, Lenny and Mary. Mary's sister is fighting breast cancer, so she had shaved her head a few months back as a sign of solidarity. (Stevie - do not get any ideas!!) But it was especially comforting to see that it does, in fact grow back... and apparently into an adorable style.
(restaurant rec: Zibibbo in Palo Alto).

Also exciting for me was a "work meeting" I had today, complete with a toll-free dial-in number. I'll admit there was no work actually discussed, but it was fun to chat with my colleagues. I believe our conversation was mostly about my friend Pam's new running skort as well as our future lunch plans.

love,
h (& c)

Mon, July 16

Allo!

Another busy weekend here, and I fortunately felt really well. We made it over to our friends' bbq on Saturday, and we even did a bit of the the SF Aids Walk on Sunday. We played it safe (no hugging, no fresh foods), since we assumed my immune system was still out of whack, but I'll find out my status today. I have 5 more days of my daily antibiotic - takes a few hours a day at the hospital. But they only do lab work every few days, so it's always exciting to find out my progress.

allowing my parents a quick break from their yard work

aids walk - chris & john (who did not get the red t-shirt memo) w/ Team Gilead

aids walk - we probably walked about 2 of the 6 miles. then i came up with some lame excuse, like 'low hemoglobin' or something.

love,

h (& c)

Thur, July 12

Success! I managed to sneak out of the hospital this afternoon. I'll need to go in everyday for the next 9 days for an antibiotic, but that's still better than staying overnight. My immune system is slowly working its way back up, but I'll be immuno-compromised for another week or so. So no brie for me! (or fresh fruit/veggies, sushi, or apparently, egg nog.) My WBC is 0.4, so I was actually lucky to get out; my doctor threatened to keep me in until my WBC = 1.5.

Brie shmee :)

love,
h (& c)

Wed, June 11

Hi all,
I'm sitting in the hospital computer lab with my pink mask on.

reference image:

I have been feeling really well (no fevers for almost 3 days), but even better news -- my doctor is probably letting me go home tomorrow. I still have basically no immune system (WBC = 0.3), but he said that I am "reliable," "live nearby," and "have my mom here" :) We have no idea what he meant by "reliable", but it probably meant my prognosis has been predictable, rather than anything to do with my level of personal responsibility. They've also been pretty impressed with how quickly Chris and I have gotten here after my last 2 infections. Speed limit shmeed limit.
My mom and I are heading off for walk #2 (which may involve the hospital store, we will see), and my dad is getting into town this evening. Will be a full house in my hospital room tomorrow!

We'll keep you all posted on my status.
love,
h (& c)

Mon, July 9

Hi everyone, it's a message from me(Chris) this time, not Hillary......I guess the drop in Hillary's cell count knocked her out a little as she's back at Stanford for what should be brief stay...similar to last month. Luckily she feels well, even better than she did last month when we were there for 5 days. She woke up Sat at 3am with a little fever, so we packed up and went into Stanford. It was pretty efficient as we were in a room by 4:30 am as they did some blood tests and gave her some antibiotics. The fever was mostly gone Sat, and was even less on Sunday. Today she hasn't had any fever and we're hoping she'll be out Wed or so, but it really depends on when they are comfortable with the level of her white blood cells. We're back at the same wing that we spend the first 3 1/2 weeks in Stanford and we are seeing some of the same nurses....the first one she had came in and gave Hillary a big hug....I guess she missed Hillary or something. They really are so nice there. Her outpatient Dr, Dr Medeiros, is the one currently on rounds each morning with the team, which is nice, since he knows her well. Similar to last month, they don't seem too concerned at all as they've said it's just some bacteria that she couldn't fight off being so low in white blood cells, so she should be over it very soon. With being at the hospital so early on Sat and up again Sun am, we actually got to watch Wimbledon finals live (with the men's final being exceptional), which was a bonus....though next year we'll be happy to watch the taped delayed version instead of the live 6am broadcast.
I just got a text message from her - she's on walk number two, has a friend coming by this afternoon, and I'll get out of work early to be there late afternoon and stay over for another slumber party. Her mom already had a flight out here and gets in Tue evening and will be here until Sat am. (I guess she'll get to reacquaint herself with Stanford for a few days.)

love,
c (& h)

Fri, July 6

Hi,
I'm hanging out in the hospital's Infusion Treatment Area for a blood transfusion. It takes about 5 hours, but fortunately the Benadryl pre-med knocked me out for the first two. We were really surprised to find out yesterday that my blood cell counts have already dropped way down. I guess they gave me the real chemo - no placebo here. Today I am getting a few big bags of red blood cells (yummy), and yesterday I got platelets (looks like a bag of murky lemonade). It was actually a slight relief to hear that my platelets were so low, because my nose was bleeding a bit this weekend, and that explains why it wouldn't stop -- no clotting. Ah, but this is kind of gross, sorry.

We had a really nice 4th. Relaxed with a few friends at home, and then visited our friends, Steven and Melinda, on the other side of Burlingame. If I may say so, I've been quite the walker lately, although I have the endurance of an 80 year old. Though, I did manage an hour walk this morning, with my fresh, new blood.


hillary, chris, tony, kathleen, & ben

Love,
h (& c)

Tue, July 3

Hi all,
We had a fun weekend with my sister, Stevie, here for a visit. Other than doing my chores (she's quite the pruner/weeder), we went for walks and did a little shopping... the highlight being the Wig Factory with Sarah and Chris. I highly recommend this place if you're looking for a differently colored coif.
Now we're waiting for my white blood cell counts to drop from last week's chemo. I should have a few more days before I'm neutropenic again. My hemoglobin was low, i.e., I was anemic, so I had a blood transfusion yesterday to replenish my red blood cells. (Thank you blood donor!)


Stevie, Hillary, Sarah - at the Wig Factory!


We were thinking pink, but purple was the clear winner


Dad, Stevie, Hill, Chris. Ok, people, back to work!

Happy almost 4th of July. It's going to be toasty here, but fortunately I have my own air conditioning on top. Actually, my head is starting to get fuzzy, so we'll see if my new hair lasts through my upcoming chemo. Chris keeps trying to buff shine my head with his sock, which is probably not helping.

love,
h & c