Going to Maui!

After some thought, I've decided to go to Maui in June to do the King's Trail Triathlon instead of Wildflower in May. I already have a lot on my plate for the month of May and I just don't think I can fit Wildflower in there too. Besides, who wouldn't want to trade in a weekend of camping in a tent at Wildflower for a weekend at the Maui Prince!

This past week, I managed to get in 4 solid days of training in a row:

Thursday - Ran 5 miles at Crissy Field. It felt more like 6 because of the wind.

Friday - Swam 2000 yards. I'm still so slow, but I think my form is getting better. Though, it always sucks when you think you're swimming pretty good then in the next lane an old guy in a less-than-streamlined position whizzes by me!

Saturday - Biked 26 miles from College of Marin to Nicasio. This was a good hard ride with big hills and beautiful scenery. I loved being greeted by the Holstein cows at the halfway point. They gave us that look like "You guys are nuts, I'd much rather be chewing grass in the sun in this beautiful valley with my friends."


Cows chillin at Nicasio

Sunday - Swim workout at Ignacio Valley College in Novato, followed by a 6 mile mountain trail run. I'm putting a lot of miles on my car as well as my body, going to Marin every weekend. The coached swims are always challenging, so I started my run already tired and cranky. I was already grouchy when I woke up that morning at 6:30am. My poor running buddy had to put up with my whining for a couple miles. Sorry Eileen.


Nice streamline


Finish strong!

Monday - REST DAY from training anyway. After getting the kids to school, I spend the day cleaning up the house from a few days of neglect and messy children.

Today - Back at it in the pool.

Myland's been spending some good quality time with Kyle and Kory while I'm out training. The kids are loving it, especially since they always come home with a new toy or goody. Does Myland spoil them? You bet!

Myland's energy is still up and down. He's been really tired for the past couple weeks, but yesterday he was able to go on a pretty long bike ride without having to call me to come get him. In bike lingo, I would be called the SAG wagon. Myland is doing much better at listening to his body though. When his body says rest, he rests. Even though his mind says "Let's go!" It's struggle when your mind and body are playing tug of war all the time, but ultimately the body always wins.

This has to be one of the more challenging aspects of recovery for Myland, but he's dealing with it like a rockstar. Okay, he can be a major grouch sometimes, but I can give him that just as long as he takes his Oscar impression to another room.

Spring break is next week, so we're loading up the mini van and going to Disneyland! I won't be doing any triathlon workouts, but will be doing an entirely different and harder workout trying to keep up with the kids in the magical kingdom. We'll see how Myland does. Fortunately our hotel is across the street, so he can go there and take naps if he needs to.

M-I-C see you real soon!

Rest Day!!!

I just completed week 6 of training with Team in Training for an Olympic distance triathlon (1.5 k-swim, 40 k-bike, 10 k-run). I've actually just decided to change my target event to the Maui King's Trail Triathlon on June 8th instead of Wildflower in May. I'm doing a lot of stuff for Kyle's and Kory's school in May and I don't think I have the extra time and energy to do everything. So I'm going to Maui! Not a bad trade-off.

So here's a sample of what a typical training week looks like:
Tuesday - Swim
Wednesday - Coached workout at Kezar Track
Thursday - Bike
Friday - Swim
Saturday - Bike
Sunday - Coached swim and run
Monday - REST!

Here is what this week really looked like:
Tuesday - Swim
Wednesday - Run on my own because I had a PTO meeting and couldn't go to the track
Thursday - Bike, but got side-swiped by a dog and crashed!
Friday - Took the day off to nurse my scrapes and bruises from Thursday
Saturday - Swim with Kyle and Kory at my friends country club pool in Mill Valley
Sunday - Bike 20 miles then run 4 miles (it's called a brick workout because your legs feel like a ton of bricks when you run after biking)
Today - REST!!!

I don't know if there's anyone on the team that actually does all 6 days of training a week every week. I try, but usually manage to squeeze in 4 days. It feels great to be training again though. The cold weather of winter and the feasting during the holidays really took it's toll on me this year, so I was anxious to get back on the training wagon.

My fundraising is doing awesome! I'm about $300 away from my $5,000 goal already. Thank you do everyone that donated so far. YOU ROCK!

There are 160 people on the Team and I get an Evite every day for another fundraiser someone is having. Most of the events involve drinking and there's at least one that involves jello wrestling. I haven't gone to any of these fundraisers yet, but I'm definitely going to that one. There was a Retro 80's Prom fundraiser last week that I just couldn't bring myself to go to. My prom was in the 80's and I still even have my prom dress! A lot of the kids on the team weren't even born when I went to my prom (did I mention that the average age on the team is 25!)

That's another reason why the training is hard. It's a challenge trying to keep up with these younguns. They are an amazing bunch to be able to train hard, party harder and raise money to fight cancer all at the same time.

Myland, has become a TNT widow on the weekends again. He still sleeps until noon, but at least the kids can get their own cereal and fend for themselves pretty well while they wait for dad to get up.

So, how's Myland doing? He's doing great! Here's the latest email update from him.

Dear Family & Friends,

Two milestones in my "new" life have recently passed.

January 26th was the 1 year anniversary of my Bone Marrow Transplant, a very significant day as it is the first birthdayof my "second" life. And a year ago, February 9th was the day I was discharged from UCSF Medical Center.

I'm happy to say that my twice-a-week checkups have now dwindled down to once-a-month. The suitcase full of medications that I used to have to take everyday is now just a pillbox. My 20 hour days of sleeping are now down to 10. My meals have gone from protein milkshakes to steak & baked potatoes. I've gained back 30 of the 40 pounds I lost. And the former struggle to ride my bike just around the block is now up to 50 miles a week.

Now if I still didn't require a chemo treatment every 4 weeks, I could call my life pretty normal again. My Doctor had told me a year ago that getting back to "normal" would take about a year...he was right.

There's been a lot of reflection of what I've been through the past 19 months since I was first diagnosed with Leukemia. I still go back and read past entries to my blog and everything comes flooding back as if it were yesterday.

Many memories, good and not so good, have been on my mind this last month. From July 13th, 2007, exactly a year after my diagnoses, till today. I find myself thinking about what I was doing exactly a year ago any given day. Funny how good my memory has become when thinking back to my darkest days. I could tell you exactly what I was doing 1 year ago but I couldn't tell you what I had for breakfast this morning. Strange how the mind works.

There's a saying that goes "you don't fight cancer alone". With that in mind, Carolyn & I have dedicated our lives to raising awareness and money to support three very important players in our lives. The Asian American Donor Program (AADP)http://www.aadp.org/pages/page.php?pageid=64 (Good Story!), Team In Training(TNT) http://www.active.com/donate/tntgsf/tntgsfCHui2 and the Leukemia & Lymphoma Society (LLS) http://www.lls.org/hm_lls.

In November, I spoke to 200 guests at the AADP's annual fundraising gala and last month spoke to 700 TNT participants at this Spring season's Kickoff. Getting a chance to tell my story, to talk about how important it is to spread awareness of this terrible disease and to tell everyone that we all can make a difference in someone else's life, seems to have become my calling.

Carolyn and I have been asked many times to speak to other patients and caregivers at UCSF to offer our support and insight. We are more than happy to take the timeto do so.

Two weeks ago, Carolyn, I and about 15 of my cycling buddies rode in the Amgen "Breakaway from Cancer" charity bike ride in Palo Alto. We raised around $7,000 for the charity which provides free services and programs for cancer patients.

My goal was to just finish, as I have not ridden any long distances in quite a while (19 months?). In case of a medical emergency, I even got my oncologist, Dr. Sayre and two of my wonderful nurses, Karen and Diane, to ride alongside me for the 25 miles (well, ahead of me). Thank goodness their services weren't needed. Shouts out to my "Team Nuts" buddies who waited patiently at the finish for me! It was a very emotional finish.

As I said before, life is slowly getting back to normal...

A few weeks ago we took a trip to the snow up at Lake Tahoe and, for Spring Break, we're going to take our first family trip to Disneyland. Da boys are doing great, Kyle will be 10 next month and Kory is pushing 6 1/2. They're having a blast making up for lost time with Dad. Carolyn's volunteering at da boys school and, of course, training and raising money for TNT (you'll be getting a fundraising letter soon).

Me?... My Leukemia is in remission and I now consider myself a Survivor. I'm just enjoying a retired trucker's life in da slow lane.

LIVESTRONG. BE STRONG!
Aloha & Love,
Myland

Well, gotta get back to my rest day!!!

Going the distance for a cure!

Dear Family and Friends,

I've joined the Leukemia & Lymphoma Society's Team in Training once again to train for an endurance event. But this time, instead of training to run a marathon, I'm training to swim, bike and run the Wildflower Olympic Distance Triathlon on May 4, 2008.

All of us in Team in Training are raising funds to help stop leukemia, lymphoma, Hodgkin lymphoma and myeloma from taking more lives. In past TNT seasons I've participated in, I didn't have a close connection to blood cancer, but this time I do. In July 2006 my husband, Myland, was diagnosed with Acute Lymphocytic Leukemia. This season, I'm not only completing my event in honor of individuals who are battling blood cancers, I am now completing my event to save Myland's life.

From July 2006 through February 2007 Myland has spent 108 days in the hospital, gone through 5 rounds of chemotherapy, 4 days of radiation and has undergone a bone marrow transplant.

Currently, Myland is recovering well and getting stronger everyday. On January 26, 2008, Myland celebrated the one year anniversary of his transplant and is in remission!

It's been quite a journey and it's far from being over. There have been a lot of highs and lows, but we continue to fight everyday - we have no other choice. But we gain strength from the constant love, compassion and support of our family, friends and, especially, Team in Training.

We never thought we'd be on the other side of this fight. However, through my involvement with TNT and the Leukemia & Lymphoma Society, we have never felt and will never feel alone in our fight.

Please join us in our fight by helping me raise my goal of $5,000. Your contribution helps find a cure for leukemia, lymphoma and blood cancers and improves the lives of patients currently fighting the disease, like Myland.

I am confident I will reach my goal with your support. Any dollar amount will help. At least 75% of all donations go directly to research and patient services. 100% of your moral support and good wishes go directly to my courage to complete my event and to continue to fight blood cancer.

Please donate online on my personal webpage at http://www.active.com/donate/tntgsf/tntgsfCHui2

Myland and all the other brave individuals battling blood cancers are the real heroes on our team. We need your support to cross the ultimate finish line - a cure!

May we all go the distance.

Thank you,
Carolyn

Myland: Back to da Islands

Hi Family & Friends,

As you may recall, three days into our annual summer vacation in Kona sixteen months ago, I got a phone call from my Doctor telling me I had been diagnosed with Leukemia and needed to get back to S.F. to begin treatment immediately. Dr. Hufford assured me at the time that "we'll get you back to Kona one day".

About a month ago, I got the OK from my Doctor to travel again. So I did! Well, we did. We checked with da boys teachers, gathered up two weeks worth of schoolwork and booked the next flight out to Kona. We could not wait to get back to the place we call our "second home". I was more excited about this trip than any of the times I went to Disneyland as a kid.

As the plane took off, I glanced over at Carolyn and she had tears in her eyes, I held her hand and cried with her. Tears of joy that we were going "home" to pick up where we left off. Dr. Hufford was right...it was one heck of a detour but we made it.

The Big Island is magical and holds a special place in our hearts for many reasons. Carolyn and I have spent many, many moons and sunsets over there. The ocean is our playground as we have explored underwater up and down the Kona coast hundreds of times. We were married there 13 years ago and I still remember that day as if it were yesterday. We have been bringing our boys, Kyle and Kory, to this magical place since they were infants, where we 'baptised' them in the ocean. As they grew, I taught them how to swim and dive in these Hawaiian waters. No wonder they're like little fish.

The sheer joy of being back in the water with them was indescribable and coming home to a place I thought I might never see again was very, very emotional. We have been very fortunate and count our blessings everyday to have been able to make this trip and to return home safely. This was our best trip ever!


Da Boys

Carolyn and I are still very involved with the Leukemia & Lymphoma Society's Team in Training and the Asian American Donor Program and will always be. These two wonderful organizations have made such an impact in our lives that we are forever grateful. Tis the giving season, so if you haven't decided who to give to yet............these two places would be a great place to start..... Happy Holidays!

LIVESTRONG. BE STRONG!

Aloha & Love,
Myland

P.S. Check out the Dec. issue of Bay Area Parent pg.20-21 in print or at

http://72.18.198.165/publisher/dpmdigital/Bay_Area_Parent_San_Francisco_and_Peninsula_Edition/issue4/magazine.php?taken=1

you might see a familiar face.

Aloha from Myland

Hello Everyone,

Okay this is it, I promise not to change blog sites again. CaringBridge didn't turn out to meet my blogging needs, so I will post here from now on. I've included all the CaringBridge blogs here in case you missed some along the way. We are still fighting this battle and continue to gain strength from all your love, compassion and support. Thank you, thank you, thank you and thanks for reading my blog.

Now here's a message from the man himself.

Happy reading,
Carolyn

~~~~~~~~~~~~~~~~~~~~~~~~~

Dear Family & Friends,

About three weeks ago, Carolyn, Kyle, Kory & I returned from our annual summer vacation at our shack in Lake Tahoe. It was the best vacation ever! I've been to many places in this world including my personal paradise, the Big Island of Hawaii so many times I lost count years ago. But nothing could compare to this most recent trip to Tahoe.

Flashback to June 2006 when we took our annual trip to Tahoe last year. Back then, for a yet unknown reason, I felt really tired, weak and not myself especially when I was riding my bike. I wasn't able to ride up the hilly roads as I always did in years past. Aw crap! Getting old and outta shape I thought. Little did I know it was the start of some foreign cancer cell invading my body. Two weeks later, I was diagnosed with Leukemia. A death sentence as far as I was concerned.

Fast forward to this year..... While sitting at the beach staring out at the most picturesque lake in the world, swimming in the lake and pool with my two beautiful boys and wife, and even riding my bike up some of those hilly roads that I wasn't able to climb last year.......I couldn't stop thinking to myself how fortunate and lucky I was to still be here.



You see. A year ago, one of the questions that went through my mind was if we were ever going to have another family vacation together. This was our first family vacation since what has been a pretty crappy and trying year for DaHuis. That's why this one was the best ever!

I now have a different perspective on life where the grass is greener, the roses are rosier and the smell and taste of food indescribably delicious. Life has gotten a heckofa lot slower and everything I now do is savored and entered into my cerebral memory card.

I still have to receive chemotherapy via a spinal injection every other week, but the benefits of the drugs far outweigh the temporary pain and discomfort of the needles. My blood lab results, which are monitored constantly, have shown excellent progress since my transplant in January. My Doctors, NP's and RN's are happy that I'm doing so well. No one could be happier than me! I even have my hair back, well, my donor's hair I suppose. It's grown back baby soft, brown and curly!



I seem to be gaining more energy and strength every single day. I had enough strength to ride my bike to Tiburon a couple of weeks ago. I've probably ridden there a hundred times before, but this was the first time since I was diagnosed so this was another best. I still have to be careful not to push my body too far because when I do, I end up paying the price with sore muscles and not wanting to get outta bed for the next few days.

The best part of my recovery thus far is that Carolyn does not have to take care my ass 24/7 anymore. I am so happy that she is finally able to get back to doing the things she loves......volunteering countless hours at Kyle & Kory's school, training for endurance events with Team in Training and raising money for the Leukemia & Lymphoma Society. In fact, we just spent last week in Monterey where she just completed her first Olympic distance triathlon this past Saturday in Pacific Grove. (1.5km swim, 40km bike, 10k run) Next up for her is the Treasure Island to Embarcadero bay swim, then the Nike Women's Marathon and to finish out the year, the Treasure Island Olympic triathlon. Whew! Just thinking about all that makes me tired. You Go Girl!!!


GO TEAM!

Needless to say, this vacation in Monterey also was the best. I'm looking forward to spending a lot more quality time with my family in the near future. Last month, after 28 years at UPS, I decided to hang up my browns and retired. Time to move on to my new job of Mr. Mom/ full time Dad!

LIVESTRONG. BE STRONG!

Aloha & Love,
Myland

A Note from Myland

Wednesday, June 3, 2007 - CaringBridge.com

Dear Family and Friends,

It's about time I got around to an update...

I had a stem cell transplant on January 26th and I came home on February 9th. I was so excited to be home again and playing with Kyle and Kory, being Dad and trying to make up for lost time. I also couldn't wait to get back on my bike again. I rode the next day and added hilly walks to my exercise routine to strengthen what cardio and muscle I had lost during my 7 months of treatment.

TOO much, TOO soon!

Crap! About 6 weeks later, my body gradually wore down and couldn't keep up with my will anymore. Prior to transplant, my doctors had discussed with me this "fatigue" period I would experience post-transplant. it could last anywhere up to a year and that I would need a 24 hour care giver during this time. Me?, Mr. Independent? Yeah right!

For the next couple of months, everyday was pretty much spent in bed sleeping or thinking about going back to sleep. The exception being, when Carolyn had to drag my butt up to the clinic twice a week for ongoing tests. It was the worst times of my life not wanting and not being able to do anything. No doubt, this was mentally harder than anything I had ever been through. I've always kept a +++positive+++ mind set since I was diagnosed last July, but I had reached my breaking point.I relied on Carolyn for almost everything. And she in turn relied on my Mom and Dad, other family members and friends as she couldn't do it all. It was a humbling and terrifying experience feeling so useless. We are so fortunate to be surrounded by such loving and caring people. We couldn't have done this without them.

About four weeks ago, I noticed a slow gradual increase in energy and appetite. I went out for short walks and biked up and down the block to get my feet we again. By this time, my muscles had pretty much said adios and I was literally starting all over. It would take me two days to recover from each of these short outings. OUCH!

I've learned to listen to my body with much more respect throughout this whole ordeal. REST, REST, REST is the key component in recovery. My mind still tells me I can go out and cycle 50 mile today, but after a while my body says "are your kidding?" Turn your ass around at the bridge and head home before we have to call an ambulance. My goal was to be able to ride from home to the bridge and back by the end of the month. Yes, I did it twice last week.

Baby steps, a lot of patience...one day at a time.

We received some great news from my doctors last week...I made it over the latest bump in da road...I'm officially in remission! The test results from my first biopsy post-transplant all came back negative. The transplant was a success!!!

LIVESTRONG, BE STRONG!

Aloha & Love,
Myland

Out of the house, into the chair

Monday, April 30, 2007 - CaringBridge.com

Last week’s UCSF clinic appointment wasn’t the usual marathon day, more like a 5K. Myland’s bloodwork was good and the GREAT news was the results of the previous week's spinal fluid test was negative! Phew! You never get used to waiting for test results. Tomorrow we go to the clinic again. We’re down to one appointment a week since Myland’s blood levels have been holding steady.
Myland’s been taking a steroid to help with energy and appetite. So far it’s working. Today, Myland even walked to Molinari’s Deli for toscano salami and swiss on a hard sour roll and picked up an order of fries from Il Polalio on the way home. Nothing like good ol’ neighborhood grub to get you going. This was the first time he’d been out of the house in 6 days!

Steroids seem to be the medicine of choice for transplant patients. They can be pretty wicked as far as side effects though. Thankfully the kind Myland is taking doesn’t come with the effects of something like prednisone. He was on that a while last year and turned into the Michelin man with a bad dispostition starting at around 9pm every night.

Over the weekend I represented Myland at an Honoree picnic for the Spring Team in Training triathlon team. They are participating in the Wildflower olympic and half ironman distance triathlons this weekend and have been training hard and fundraising harder since January. The team has surpassed $300,000 in funds raised already! The team will be doing their events in honor of Myland. Of course, I made them all “M Hearts” to wear on their race jerseys, so they can take Myland with them on their journey to the finish line. He feels totally privileged to be honored by such an awesome group of people. GO TEAM!

And last….drum roll please….we got a big ol’ comfy leather La-Z-Boy recliner for our living room! I was hoping to get a not-so-big La-Z-Boy, seeing as we live in a not-so-big a-part-ment. At the La-Z-Boy showroom (excuse moi, La-Z-Boy Gallery) I caught Myland relaxing in a not-so-small recliner and knew I couldn’t convince him to go for the take-up-less-room-in-our-apartment version. Luckily, we were able to remove parts of our sectional sofa to make space. Now Myland can lounge in the midst of all the action instead of being isolated in the bedroom. Swe-et!



LIVESTRONG, BE STRONG!

love,
Carolyn

~~~~~~~~~~~~~~~~~~~~~~~~~

Today’s victories
Myland walked 10 blocks
Kyle’s sprained ankle finally feels better
Kory got to bring home Mr. Bear from school
I finished making 125 “M Hearts” for the TNT tri team

Day by day

Tuesday, April 17, 2007 - CaringBridge.com

Another marathon day at the UCSF oncology clinic. Not much new to report. Myland's blood counts looked good, but he's still ultra fatigued. The doctors said it's probably all the chemo and radiation catching up with him. I've been researching this and the effects from all the chemo and radiation can occur months after the initial treatment and can last for months, so Myland's fatigue is not at all uncommon.

Myland also had a lumbar puncture today. Sounds nice doesn't it? A needle is inserted into his lower spine and some spinal fluid is drawn out. Then a drug called methotrexate was put back into his spine. Myland's had about 10 of these since he was first diagnosed, so he's used to the poking. He's such a tough guy. I almost fainted during the first time he had this done. I had flashbacks of a botched epidural I had while in labor with Kyle, but now I could do it with my eyes closed. This procedure treats the central nervous system and is routinely done for patients with acute lymphocytic leukemia.

Little by little, day by day we are beating down this disease. Sometimes we go two steps forward then one step back, but we continue to move in the right direction.

Now I have some sad news to share. Last October we had the pleasure of meeting and becoming great friends with Brenda Donato. She was diagnosed with AML in 2005, had an autologous transplant, relapsed in 2006 and had an allogenic (unrelated donor) transplant in October. She had major complications from the transplant and passed away on Saturday. Although we only knew Brenda for just short of six months, she has touched our lives profoundly. She had this way about her that endeared her to people instantly. I remember the first time I met her. Myland had just been admitted to UCSF for the first time. A mutual friend from Team in Training who was there visiting Brenda introduced us. Brenda had had her transplant 10 days prior and was running a fever. Brenda commented how calm and positive I seemed to be. In reality, I was terrified about what we were about to face. I was putting on a front for her sake because I didn't want to send out any negative vibes. Somehow Brenda saw through my front and, after the small amount of time I spent with her that evening, I left her room feeling genuinely calm and positive. Her spirit, her Brenda-ness was empowering. Despite all that she was struggling with, she made me feel better about myself. I grew close to Brenda. She was always in my thoughts. But when I wanted to call her to see how she was doing, she would always beat me to the punch and call me to see how Myland was doing. She is a "warrior of compassion and a sorceress of the spirit". We will miss her.

LIVESTRONG, BE STRONG!

love,
Carolyn

~~~~~~~~~~~~~~~~~~~~~~~~

Today's victories:
Kyle walked to school all by himself for the first time!
Kory asked for an apple for dessert!
I found a parking spot at UCSF on the first round!
Myland got out of bed before noon!

Full Circle

Thursday, April 12, 2007 - CaringBridge.com

Today I had lunch with a new friend and his wife. He was recently diagnosed with Leukemia and is going to have a stem cell transplant next month. We found each other through Team in Training and this website. I was drawn to his story because we have so much in common. Besides battling the same illness as Myland, he's the same age as, grew up in the city, very athletic, has a young son, and shares my interest in promoting kids and fitness. We had never met before, but I felt we made an instant connection. We easily chatted for more than an hour - sharing our stories and comparing notes. I could sense the uneasiness he and his wife were feeling about the upcoming transplant and treatments. I think it was comforting to them to hear our story and I hope it helped to ease some of their fears and anxieties. We really just touched the tip of the iceberg of all that we had to share with each other. But now that they're members of this special club, I know we will have many more opportunities to connect.

I feel like we've come full circle. When Myland was first diagnosed the Leukemia and Lymphoma Society, through their First Connection program, hooked us up with JD who had the same diagnosis as Myland, but is a few years into recovery. Myland and I were terrified of what we were about to face, but JD eased our fears and we were inspired by his strength and courage. We didn't talk to JD that often, but the few times that we did really made a difference in the way we dealt with that early stage in our battle.
...and the club keeps growing.

LIVESTRONG, BE STRONG!

Love,
Carolyn

~~~~~~~~~~~~~~~~~~~~~

Today's victories:
Me-Folded the monster mountain of clean laundry that has been blocking our hallway for a week
Myland-Walked around the hallway 6 times (made possible by my victory)

Here's the latest

Wednesday, April 11, 2007 - CaringBridge.com

So here's the latest...

Myland and I spent all day at the UCSF clinic today. By now we know not to plan anything else on clinic day because we're usually there for hours. We arrive one hour before Myland's appointment for labs. Then we wait. Then they put us in an exam room. Then we wait. Then we see the nurse practioner. Then we wait. Then we see the doctor. Then if they want Myland to have some kind of procedure we wait and wait some more. I've been reading a book a week and Myland's been taking a lot of naps. If anyone has any good recommendations for some light reading let me know.

Myland's blood counts were good, so that means that the donor cells are doing their thing. Myland's major complaint right now is being extremely fatigued. The doctors think it's the residual effects of a new chemo that was given to Myland through the spine a few weeks ago. Myland was feeling great when he came home after the transplant. He was riding his bike and going for walks. In fact, his doctor had to curb his bike riding because he didn't want him to over do it. But this new chemo really took the wind out of sails. Now he has a hard time getting out of bed and walking down the hall. They've stopped the drug and now we're just waiting for the effects to wear off...more waiting.

Myland's appetite and taste buds are still not back to normal. He's been forcing down vanilla Ensures and eating what he can. He's lost about 30 pounds. I used to tease him about being a little guy. Now he really is one. The doctor prescribed this appetite stimulant called Marinol that gave Myland the munchies, but made him too spacey. Actually, stoned would be a more accurate description. Marinol is a synthetic cannibis, so it's like smoking a joint without inhaling. Man, they have something for everything these days.

Since July of last year up until the stem cell transplant, Myland has been on the standard protocol of treatment for the type of leukemia he has. But now, since everyone reacts differently to a transplant, it's more of a "make it up as you go" treatment. We feel confident that Myland is getting the best care possible, but it's difficult not to know what to expect next. This makes it impossible to plan for the future or even next week. We're taking baby steps one day at a time.
It's hard to believe what Myland has been through these past nine months. Cancer treatments have come a long way, but they're still brutally difficult to endure. You have to be super-human to get through it. Fortunately, if you didn't know already, Myland is super-human. When times are tough, he gets tougher. He is an ikaika warrior.

We've gotten to know a lot of super-human people throughout our fight. Brenda, Jennie, Ed, Gretchen, Joanna, David and all the other people we see at the clinic every week. They are all fighting their own battles. They are all warriors. Brenda always says "we're all in this together". She couldn't be more right. There is a lot of strength and wisdom to be gained by that comment. I don't know why anyone would ever go it alone when they didn't have to. We couldn't have gotten this far without all of you. We wouldn't want it any other way.

LIVESTRONG, BE STRONG!

love,
Carolyn

How's Myland?

It's been a while since I've posted. Thought it was time for an update.

Today is day 67 after the transplant and Myland is doing well. He's slowly getting his energy, strength and appetite back. Slowly being the operative word. The road to recovery is a long and slow one. Patience is the key, but definitely the hardest part. Myland goes to UCSF twice a week for check ups. So far his blood counts look good and the donor cells are showing signs of engraftment. He's taking a ton of meds all day everyday. I had to brush up on my Excel skills and put them all on a spreadsheet, so Myland knows what to take and when. When not at the clinic, Myland spends most of his time resting at home. He's tired all the time and is taking great advantage of the new Sleep Number bed and 32" LCD tv we got for the bedroom. Myland's doctor has limited his biking for now because some of the meds make him out of balance, but he's been going on walks around our 'hood when he has the energy.

Since Myland has been home, we have had to adjust our lifestyle. Let me tell you, that hasn't been easy. We were so used to being the on-the-go-active-outdoorsy family and now it's so different. It hit me the other day when I was out a Crissy Field and there were all these families together riding bikes during Spring break. I realized that's not something we can do right now. We would normally be at Tahoe this week for Spring break. We would normally be planning our summer vacation to Kona right now. Our lives are nothing close to the "normal" we were used to. Our normal now is 18o degrees different than what it was before. Mentally, that's tough for me, the kids and especially Myland.

It could be years before Myland is back to his new "normal" self, until then we live our lives day to day. Right now we need to focus on daily victories like "today I'm going to walk around the block" , "today the kids will be on time to school", "today I'm going to yoga", "today we will have dinner together and not watch TV".

If I seem a little down it's because the realization of our new reality is beginning to hit me. We are in another phase of this battle. Whereas the first few phases required strength this new phase requires strength AND endurance. We're at mile 20 of a marathon when you can't believe you've come this far already, but you don't know how the hell your going to make it another 6.2 miles to the finish.

But hey life goes on. Kyle turned 9 last week and Kory had his first egg hunt with his kindergarten class this week. We are just so happy that we are able to share these moments together.

I'm going to try to post more regularly from now on. Really! So check back for updates.

LIVESTRONG, BE STRONG!

love,
Carolyn

Stem cells are in the house!

Friday, January 26th was the big day.
Day zero.
The start of a new life.
The doctors and nurses kept saying that it was going to be anti climactic.
A non-event.
It's going to be as simple as a blood transfusion.
No surgery, anesthetic or needles.
I saw the nurse walking towards Room 1173 with a red cooler with the word "Transplant" boldly written on the side.
The stem cells are in the house!
"Okay we're all ready," she says, "It's a beautiful thing."
Myland and I sat together in bed while the nurse hung the bag of stem cells on the pole.
"My life in a bag," Myland said.
"You're going to be okay," I reassured him.
We watched the magic cells drip into the tube and into Myland's body.
We cried tears of joy, hope and disbelief.
We couldn't believe this was happening.
That a donor had actually been found.
That the cells were really here.
That Myland is getting a second chance at life.
Non-event? No way!
This was the biggest non-event event of our lives and it's as real as it gets!
There were just the two of us in the room, but the air was thick with all the positive mana (spirit) that was being channelled into the room that day.
It took about 30 minutes for all of the reddish liquid to make the journey to it's new home.

And that was it.

Happy Birthday Myland!!!

LIVESTRONG, BE STRONG!

love,

Carolyn

Miracles Do Happen!

A DONOR HAS BEEN FOUND!!!

Yes, it's true, a bone marrow donor for Myland has been found! I didn't include the news in the last blog because I wanted to be absolutely sure that this was really happening and I also wanted this special news to have it's own blog entry. Well, it's really happening. Everything is set and Myland was admitted to UCSF last Thursday, January 18th, to begin treatment in preparation for the bone marrow transplant on January 26th.

We are so happy and excited. This is it! This is what we have been hoping and dreaming for. It truly is a miracle.

I know you all have a lot of questions, so I've put together a FAQ to answer some of them.

When did we find out?
We found out a few days before Christmas. Myland went to UCSF for a routine checkup and that's when his doctor told him. I have gone to every doctor's appointment with Myland, but of course this is the one that I missed. When Myland heard the news he couldn't believe it. He thought he didn't hear the doctor right and thought this must be some cruel joke. But the doctor assured him that it was true. Myland called me write away all shaky, in tears and barely able to talk. When I answered my phone, my heart stopped. I thought for sure something must be wrong. Myland shared the news and then my heart stopped again. I couldn't believe what I was hearing either and I didn't believe it until I heard it directly from the doctors mouth a week later.

All the doctors said that finding a donor for Myland would be very difficult and highly unlikely. We were all set to go with plan B which was an autologous transplant. An autologous transplant is when you harvest your own stem cells while in remission then infuse those cells back into your body in hopes of producing healthy blood. Although, this treatment was promising for Myland especially with the addition of a new drug called Gleevec, it was definitely the B plan. Ninety nine out of a hundred doctors would say that an allogenic transplant (a tranplant using donor cells) would be the best option for Myland if a suitable donor was found. Donor found! Bring on the A plan! Santa was very good to us this Christmas!!!

Who is the donor? Did the donor come from one of our bone marrow drives?
We don't know who the donor is or if it came from one of our bone marrow drives. The only thing we know is that it is a healthy male in his 20's. The National Marrow Donor Program is very protective of their donors and only after a year and with the consent of the donor are we able to learn about the donor. It's kind of strange not knowing who this saint of a person is who is willing to give Myland a second chance at life, but hopefully someday we'll be able to contact this person to tell him how thankful we are. And wouldn't it be something if it was someone from one of our drives?!

What happens when Myland goes to UCSF and how long will he be there?
Myland will undergo a prepartory regimen of chemo and radiation to get his body ready to receive the donor's cells. He began two days of a chemo drug called Cytoxan on Friday, will have a break on Sunday and then total body iradiation (TBI) twice a day Monday through Thursday. The transplant will be done on Friday if all goes as planned. The idea is for the chemo and radiation to wipe out all of Myland's bone marrow and blood producing stem cells, as well as destroy any residual leukemia cells that may be lurking about. Then to replace the cells with the donor cells which will graft with Myland's body and replenish it with healthy blood cells. The doctors tell us this will most likely be Myland's toughest hospital stay yet as the side effects of the chemo and radiation can be quite brutal. Of course, the doctors have to give us the worst case scenario, but hopefully it won't be that bad. Myland is expected to stay at UCSF at least one month while he recovers and waits for his new blood to do it's thing.

How do they get the donor's bone marrow?
The name "Bone Marrow Tranplant" sounds worse than it actually is. It's actually called a "Stem Cell Transplant". The way the stem cells are collected depends on the donor and the collection facility. Nowadays, stem cells are usually collected through the arm and not so much from the bone. It's just like giving blood or platelets. If the donor chooses to donate with bone marrow, it's a simple procedure where they go into the pelvic bone with a small needle and draw out the bone marrow fluid under local anesthesia. Either way, Myland will be receiving the donor's cell through a catheter inserted in his chest. It will be the same as getting a blood transfusion. Amazing!

What are the chances for a cure?
Chances are good. Myland is receiving the best treatment, getting the best medicine and being taken care of by the best doctors in the world. But most importantly, Myland has a donor. This miracle has given us real hope for a real cure.

What happens after the transplant?
It's hard for me to think about post-transplant since we are just beginning the transplant process, but we've been told that it will be a long recovery of about a year before Myland begins to feel like himself again. He will be monitored closely during that time and taking a ton of meds. He will also have many restrictions regarding exposure to the environment and germs. There's going to be a long road ahead of us, but, like we've been doing all along, we'll take it one day at a time.

Miracles really do happen. We know it was a result of all of your hopes, prayers, wishes and endless support that made this miracle happen and our dream come true. Thank you!!!

Please think of Myland on the 26th and send all your positive energy his way for a smooth and successful transplant.



Me and LiveStrong Man out for a little 25 mile ride the day before he was admitted to UCSF

LIVESTRONG, BE STRONG!

love,

Carolyn

Hau'oli Makahiki Hou

Happy New Year!

I can't believe it's January 2007 already. Time flies when you're fighting cancer.

It's been a long while since I've posted. So much has happened since my last blog. I don't even know where to start. I think I'll just give a chronological sypnosis of the past few months to get you all up to date.

September 28 - October 19: Myland is at UCSF for second round of chemo
Myland did pretty well with the chemo with not too dramatic side effects other than being completely wiped out for about a week. As usual, he fanagled his way into the room with the primo view and Vic "Super Domestique" Sproul brought his bike and trainer in to aid his recovery. Kyle, Kory and I visited often for game night with dad which included checkers, chess and Battleship.


Hmmm, plan your next move carefully, this kid's pretty good

October 22: I ran the Nike Women's Half Marathon
It was an amazing event. Amazing because I crossed the finish line with little training and because it felt as if all the runners were running for us. There were 15,000 runners who together raised 16 million dollars for the Leukemia & Lymphoma Society! I ran with Myland's name on my shirt and all the runners on the SF/Marin Team in Training team wore their "M hearts". All day people were cheering Myland's name which kept me going mile after mile. Myland and the boys met me a mile 11. We hugged and cried for a while before I made my way to the finish line. Needless to say it was a very emotional day.



GO TEAM!

October 30 - November 2: Myland is at UCSF for an interim chemo treatment
This was a shorter 4 day treatment with one chemotherapy drug to keep the leukemia in check before going back for more intensive treatment.

November 4: Bone Marrow Drive for Myland
An amazing 170 people got their tissue typed to be registered in the National Marrow Registry. We were overwhelmed by the awesome turnout. All of our family, old friends, new friends, friends of friends and total strangers made the effort to come and support our cause. The drive was facilitated by the Asian American Donor Program (AADP) and held at Kyle and Kory's school, Yick Wo Elementary. Neighborhood restaurants donated food for a delicious buffet and North Beach businesses donated prizes for a raffle. It all came together seamlessly through the help of many volunteers and the tireless efforts of our school principal, Darlene Lim. We can't thank everyone enough for making this a tremendous success.


Myland's sister, Melinda, Cousin Ellen and the guest of honor

November 5: Bone Marrow Drive for Myland at City Church of San Francisco
Thanks to the help of the Ferrogiarro family and the AADP we registered another 50 people, making a total of 220 new potential donors added to the bone marrow registry. A stellar weekend indeed!

November 18: The San Francisco International Car Show
Bigger than Christmas, New Year's and all the holidays put together! It's serious business for Da Hui kids when the car show comes to town. In fact, Myland and I worked hard at convincing his doctors not to schedule his next hospital stay until after we took Kyle and Kory to the car show. Thankfully the docs agreed that spending quality family time amongst the newest line of Toyotas and BMWs would be good medicine.


Corvettes, Mercedes and Hummers, oh my!

November 21: Myland is admitted to UCSF for a fourth round of chemo
Myland begins what turns out to be the roughest treatment yet. He was given the same drugs as the second round, but in slightly higher doses. The drugs have a cummulative effect on the body, so, whereas Myland fared pretty well in the second round, this time they basically kicked his ass. All those side effects you hear about chemo came rolling in. Nausea, mouth sores, diarrhea, loss of taste and appetite, gas, uncontrollable hiccups, headaches, major fatigue, and generally feeling shitty 24/7. If it wasn't one thing it was another. Oh and there was a new one we weren't expecting. Myland's hands completely blistered and looked and felt like he placed them on hot coals. Then all the skin on his hands peeled off. It was lovely. Remember when you were a kid, covering your hands with Elmer's glue, letting it dry, then peeling it off? And to add insult to injury the whole time Myland was in the hospital (4 weeks) Kyle and Kory couldn't visit. Children 12 and under are banned from the floor during flu season. It was a tough one, but Myland never doubted he could get through this. It took about 2 weeks for the side effects to finally subside and for Myland to get back to charming the nurses and back on the bike (of course his bike was at the hospital since day one). The nurses were glad to see that infectious smile again and the custom carbon fiber Giant was glad to have the dust wiped off of it and taken for a spin.


A room with a view and a bike


Myland's wall of inspiration

November 29: Bone Marrow Drive for Myland at the Telegraph Hill Neighborhood Center
The caring staff at the Tel-Hi Center went above and beyond their call of duty by organizing a bone marrow drive for Myland and 40 more potential donors were added to the registry! We just can't thank the Tel-Hi Center and it's staff enough for all they have done for us. The Tel-Hi Center has made a huge difference in our lives since Kyle and Kory started their after school program. The boys were welcomed into the program with open arms after the staff learned of our ordeal and the challenges we faced with childcare. Tel-Hi has made our now more hectic lives more manageable and has reaffirmed just how lucky we are to live in such a supportive community. And the kids love going there too!




The ever cheerful and always helpful, Pearl Hui (Myland's mom)

December 3: Bone Marrow Drive for Myland at YMCA Cupertino
Myland's sister, Melinda, organized a bone marrow drive in Cupertino for all our friends and family in the South Bay. It was an incredibly successful event, recruiting 50 more potential donors. Melinda and her husband, John, are well connected in the area and, once again, the community came forward to show their support.

December 18: Myland comes home!
After 28 days at UCSF, Myland finally comes home. All he could do was cry when he took his first breath of fresh air, something he will never take for granted again. The kids were soooo happy to have their daddy home again and just in time for the holidays. We had the Christmas decorations up weeks ago, but Kyle and Kory wanted to wait for dad to get the tree. The pickin's were slim by the time we got to the Christmas tree lot. There were only 8 foot trees left, so an 8 foot tree we got (minus the 2 feet we had to cut off the bottom to get it to actually fit in our apartment!). It took three days to decorate our monster tree and then the scene was set to enjoy a Hui Family Christmas. The kids and I got just what we wanted, their daddy and my husband - home for the holidays!


Together at last!


Santa was very good to Kory and Kyle this year

Well, that pretty much sums up the major events of the last few months of 2006. The second half of 2006 was a rough one for us (to tell the truth, at times it was totally f*d up), but us Huis never lost our fighting spirit and positive attitude. Although, at times it took some work to keep it up. It's been a little over 5 months since we started this ordeal and it's far from over. It's been hard, overwhelming, tiring, trying, emotional, painstaking and a true test of endurance - a lot like running a marathon. It's funny how my whole connection to leukemia started with running a marathon with Team in Training and how a marathon is the perfect analogy of our ordeal. But I'll go into that in another blog.

So how are we doing through all of this? Well, you've heard all the cliches - "We're hanging in there", "Taking it one day at a time", "Doing the best we can under the circumstances", "We gotta do what we gotta do", etc, etc. Those are all true and relevant to our situation, but are just readily available blanket statements. It's easier to use one of these cliches when talking to people than having to explain what it's really like to be on a rollercoaster ride that you didn't ask to be on with unexpected twists and turns while blindfolded. It's been quite a ride so far, but truthfully we're all doing okay. The best way to describe it is (and this isn't a cliche), how we're doing is reflected by how Myland is doing. When Myland is feeling crappy, I'm feeling crappy, which ultimately has a trickle down effect on Kyle and Kory. And when Myland is feeling great we're all feeling great. The trick to keeping it all together during the ups and downs is to maintain our fighting spirit and positive attitude (I know I sound like a broken record, but that spirit and attitude is what truly sustains us), and most importantly, to not be afraid to lean on those who care about you and to accept the support of those offering to give it. We've never felt alone in our fight and could never have gotten this far without the tireless support of our extended community. For that we are forever thankful. I guess 2006 wasn't all that bad after all.

Wishing you a healthy, happy and hopeful 2007!

LIVESTRONG, BE STRONG!

love,
Carolyn

Bone Marrow Drive for Myland

Dear Family and Friends,

In July of this year Myland was diagnosed with Acute Lymphocytic Leukemia (ALL). He received the shocking news from his doctor while on vacation in Kailua- Kona, Hawaii with his wife, Carolyn, and two children. The whole family had to fly back to San Francisco immediately, so Myland could begin treatment for this life-threatening disease. Currently, Myland is at UCSF Medical Center undergoing a second round of chemotherapy.

Even though Myland is doing well with the treatments, it's not enough for a cure. Due to the type of leukemia Myland has, his only chance for survival is a bone marrow transplant. Unfortunately, Myland's only sister's bone marrow was not a match.

At this time, Asians make up less than 7% of the 6 million donors in the Bone Marrow National Registry. Because there are so few registered it is difficult for Myland and other patients of Asian descent to find a life-saving match.

Please come to the Asian Bone Marrow Drive for Myland Hui to register your bone marrow type.

You could be Myland's "Miracle Match"!

Asian Bone Marrow Drive for Myland Hui
Saturday, November 4, 2006
11:00 a.m. – 4:00 p.m.

Yick Wo Elementary School
2245 Jones St. at Lombard St., San Francisco
(parking available in upper school yard)

About the Bone Marrow Drive

• You will be registering your bone marrow type with the National Marrow Donor Program (NMDP) Registry
• There are NO NEEDLES and NO BLOOD involved to type your bone marrow. A simple swab of the inside of your cheek and a form to be filled out is all that is needed.
• The age restrictions are between 18 and 60 years old.

What if you are a match?

• It is rare to be a match and even rarer that a patient finds a match at his own bone marrow drive. But it HAS happened. About 1 in every 200 people in the registry will get called in their lifetime.
• If you are a potential match, the National Marrow Donor Program (NMDP) will contact you for further testing. This may include obtaining a small blood sample.
• If further testing proves that you are a good match, then the NMDP will provide you with extensive information that fully explains the marrow donation process. You are never required to donate. The decision is still yours.

That's it! You just saved a life, possibly Myland's!

Our heartfelt thanks to you!

Aloha and love,
The Hui Family

For more information:
Asian American Donor Program
Asia Blume - Outreach Coordinator
asia@aadp.org
www.aadp.org
800-59-DONOR

Round 2

Hello Everyone,

It's been a while since my last entry. As the saying goes, no news is good news. Today, however, I have some news. Last Thursday Myland was admitted to UCSF for a second round of chemo. His blood and bone marrow continues to show remission, but remission is not a cure. If he didn't do anything more at this point, the leukemia would most likely come back. So we have to continue on with our fight.

Myland started a four day course of chemo on Friday. He's being given different drugs (Ara-C and Etoposide) than the first round at CPMC. They can't give the same drugs twice because the cells develop a resisitancy. Those friggin cells have a mind of their own, so we're going after them from all sides. Since Myland is in remission we will be hitting them when they are down and hoping for a knock out. All of Myland's doctor's concur that we need to keep fighting while Myland is STRONG and the disease is weak. Dr. Hufford says, "Don't trust leukemia for a second."

Myland seemed to sail through the first round of chemo at CPMC . He was able to maintain his energy and appetite. This time he’s feeling wiped out for most of the day and doesn’t feel much like eating. Although, the food at UCSF isn’t the greatest. In fact, the first thing the admitting nurse told us is that the food there is bad. After tasting some of Myland’s meals, I have to agree. I guess it doesn’t matter much to Myland because the chemo makes everything taste like metal anyway.

So far, it’s been quite a different experience at UCSF compared to CPMC. Whereas CPMC had a cozy nurturing quality, UCSF is very institutionalized and businesslike. Myland is on 11 Long which is the hematology/oncology floor. Everyone on the floor is undergoing chemo treatments or has just had a bone marrow transplant or some other kind of transplant. You see patients with bald heads walking the halls pushing their IV poles. There are signs on all the doors warning visitors to take the necessary precautions before entering. It’s serious business on the floor and it can be quite intimidating. The UCSF nurses and doctors are all top notch, but I feel more of a sense of urgency and intensity. The campus itself is huge and very busy. Getting there is no easy task from North Beach, nor is finding your car if you can’t remember what floor you parked on. All this was quite daunting at first, but I’m gradually finding my way and Myland is settling in. I feel like we’ve arrived in the leukemia world. We’re not in Kansas anymore!

It was great to have Myland home for the past month. Everyday was like a Saturday. Myland spent quality time with the family, got together with friends, rode his bike and enjoyed the everyday routine of life with two spirited kids. Myland even surpassed his goal of riding 20 miles on his bike just 2 weeks out of the hospital! I guess this is why going to UCSF was a bit of a downer for us. Myland was feeling so great and we were so enjoying having him home, that it didn't make sense that he would have to go back to the hospital, at least not this soon. The harsh reality of it is that he couldn't have gone back to start treatments soon enough. Like I said before, remission is not a cure.

An analogy that Myland likes to use is of two heavyweight boxers fighting for the championship.

• Round One...Boxer Hui is having a great round, he is pummeling his opponent and has got him on the ropes.
• Round Two...Boxer Hui is not letting up, he continues to connect, Boxer Leuk gets maybe a couple of punches in but clearly Boxer Hui is knockin the crap outta Leuk.

Ding ding! Come out fighting!
We're going to keep fighting like hell to beat this!
WE WILL BEAT THIS!

Keep sending your good thoughts, hopes and prayers. We can feel your positive energy.

LIVESTRONG, BE STRONG!

love,
Carolyn

~~~~~~~~~~~~~~~~~~~~~~~~~~

Here are some snapshots of all the fun we had while Daddy was home...


Myland's childhood buddy, Arthur, rounded up 30 UPSers at Capp's Corner


The boys in brown and one in yellow.


Team DaHuis


At Empress of China for Eric and Renee's wedding


Say Cheeeeeese!!!


Mmmmm! Gelato!


"School" for a day at the Monterey Bay Aquarium


DaHui Ohana in Monterey


Biker Chick and Big Daddy


Grrrr!!! I am LIVESTRONG man!!!

Home Sweet Home!

Da Hui Ohana

Yes, that's right! After 33 days at CPMC, Myland is finally home! It's so great to be together as a family again. The kids are out of this world excited to have their daddy home and I'm ecstatic to have my husband back. It was a kind of bittersweet farewell for Myland though. CPMC was Myland's home for a little more than a month and the CPMC staff had become his family. He had his favorite people at the hospital, but befriended all who came in contact with him, from the on-call doctors to the hospitality cart lady. Myland's endearing personality made him a favorite among the staff and they were quick to remind me of that whenever I visited. Myland shared hugs and tears with everyone that took care of him. As I witnessed him sharing his love and appreciation with the staff, it made me realize what angels these people in the business of caring really are. It also made me realize how special Myland is and how this ordeal is molding him into the person he really is down inside - a kind, deeply compassionate and soulful individual.


Wheelchair?! Fahgettabowdit! I'm riding outta here!

Actually, Myland could have come home on day 30 which was a Friday. However, he felt that coming home while the kids were still out of school may have been too overwhelming, so Dr. Hufford gave him the ok to stay until Monday. Myland asked if he was able to go out and the Doc said, "You're a free man. You can do whatever you want." I'm not sure the Doc knew what Myland meant by "going out". Due to liability issues patients are not supposed to leave the hospital grounds, but on that Friday afternoon Myland put on his knit cap, jacket and Crocs and headed eight blocks down the steep Fillmore St. hill to his favorite bike shop, The Bike Nut. The problem was after a month in the hospital he couldn't walk back up the hill. When I arrived at the Bike Nut to shuttle him back to CPMC, Myland was sitting there eyeing all the latest and greatest bike stuff and talking bikes with his good friend and owner of The Bike Nut, Huseyin. I tell ya, it was just like seeing a kid in a candy store. He was all wide-eyed, bushy tailed and just all excited to finally be out of the hospital and surrounded by the accoutrements of his second love (his family is his first love, obviously, but sometimes I wonder). It warmed my heart to see him like that, it had been a while since I'd seen that ear to ear grin.

The next day Myland headed out of the hospital door and down the hill again to The Bike Nut. Give this guy an ounce of freedom and he goes crazy. Who can blame him? This time the nurses were on to him. Due to a miscommunication between the nurses, Myland went from being a free man to a fugitive. I received a frantic call from Myland's nurse looking for him. He said they'd been paging him all over the hospital and they couldn't find him. The nurse grilled me with questions as to Myland's whereabouts and told me sternly,"Myland cannot leave the hospital!" A few minutes after the nurse and I spoke, Myland strolled back to his room no worse for wear except for the bag of goodies he brought back from a side trip Japantown. They all had a good laugh about his disappearing act and promptly secured a homing device on his ankle and a guard outside his door in case he tried to sneak out again ;)


On the lam at The Bike Nut with Huseyin

Well it's been a week and a day since Myland's been home and we're doing great. The kids are back in the school groove and Myland has been spending his days riding his bike and having lunch with friends. Amazingly, Myland went on a bike ride with me and 4 of his bike buddies just one day after coming home from the hospital. Myland made it 2.5 miles before his stomach started growling and we had to get him quickly to a restaurant for a burger and fries. He's still taking prednisone steroids that makes him monster hungry. Besides the hunger issue, Myland had a great ride. He had been looking forward to this day for a long time. Two and a half miles is HUGE when you've been in the hospital for 33 days. By the way, Lance Armstrong's first ride out of the hospital was 1 mile. Who deserves to wear Le Maillot Jaune (The Yellow Jersey) now?

Off to school with Dad! Hooray!


Team Hui

So what's next? I can't really say right now. What I can say is we just finished chapter 1 of our story and the day he got home was page 1 of chapter 2. Although, Myland is considered in remission now, pending the results from a spinal tap he had last week, he still needs to undergo treatment to keep him there. We don't know what that involves at this point until we see the Adult ALL experts at UCSF in a couple weeks. We're taking it one day at a time. Trying to think or plan too far ahead right now is unrealistic as well as stressful. Myland and I are taking this time to spend quality time with each other, our children, family and friends. We are continually receiving good thoughts, prayers and wishes from everyone which continues to sustain us in our fight.

Just got some great news from Dr. Hufford as I was writing this...

The test results are back from last week's spinal tap and there weren't any leukemia cells in the spinal fluid! None! Dr. Hufford's exact words were, "There is NO leukemia in Myland." Woooohoooooo!!!!!!!!!

Excuse me I have to give Myland a huge hug and kiss right now.



Me and my bolo head buddha baby

LIVESTRONG, BE STRONG!

Aloha and love,
Carolyn

The Miracle of Medicine

The good news is that the army of chemotherapy drugs that I wrote about in my last blog is in full force and conquering all the bad cells in Myland's blood. The great news is that Myland's good cells are coming back on their own. His numbers are trending up everyday and he is no longer neutropenic with low white blood cell count and low immunities. This doesn't mean that he can have a salad, fresh fruit, sashimi and steak tartare party for 20 of his friends at the hospital (while neutropenic, Myland couldn't have any raw veggies, fruits, under-cooked foods, or many visitors). What it does mean is that he doesn't have to wear a mask when going out of his room, he can have a little lettuce and tomato on his sandwiches, he can kiss me on the lips and Kyle and Kory can finally visit him. But more than anything, it means that Myland is getting better. The battle is far from over, but this is a huge step towards reaching our goal - to BEAT THIS!

That chemo sh*t really works! It baffles my mind how those biotech science guys come up with the stuff. I mean we are talking research and development at a cellular level. Did you know humans have an estimated 100 trillion cells? And that the typical cell size is 10 micrometres? This conjures up memories of the ride at Disneyland where you go inside a microscope and see all those giant molecules. Those cancer drug scientists have figured out ways to target specific cells and kill them. It's just amazing, I can't even fathom it - the miracle of medicine. Actually, my cousin Steve is one of those scientist. I have to have a chat with him to find out how the magic is done.

Speaking of cells, Myland's whole battle with leukemia started with one cell that went bad. One little bugger went and messed it up for all the good cells. Well, we now know that that cellular delinquent and all it's cronies have been wiped out. Now comes the task of keeping them out.

Myland has been doing an amazing job of keeping up the fight. So far, he's been unscathed by the treatment (knock on wood). The nurses are astounded at how well he is doing. They are all oncology nurses, so they know how brutal chemo can be. He hasn't had any nausea, mouth sores, aches, pains, fever - all those horrible side effects you hear about - nothin' (knock on wood, again). The only side effects that he has are that he's tired, his hair is falling out and he has the appetite of a linebacker (from the steroids). I credit his resiliency to being in good health before this all started, to his incredible spirit and to all the good thoughts, wishes and prayers that he gets from our family and friends everyday. He's going on day 28 in the hospital and he's still shaka brah (hangin' loose). Myland has gone from being my husband to my hero - my ikaika.


Shaka-laka!


Myland the Squid

So, the second question that people ask me after asking about Myland, no actually it's the third question (people ask about the kids second) is how I'm doing. It would be easy to say that I'm fine, but to be brutally honest I am fine, I really am. I'm fine because Myland is doing fine. Also, because I'm fortunate to have the help and support of my and Myland's family. Their help has allowed me to spend quality time with Myland, the boys and myself. Just tonight, when I got home at 10pm from a run and visiting Myland, Myland's mom and aunt had already given the kids a bath, got them in their jammies and helped them brush their teeth. All I had to do was fall into bed with them. How's that for a little Nanny 911? Our families have really made my job of mom, wife and caregiver a lot easier and for that I am forever grateful.

Although, there are times, like now when it's quiet, that this all seems like a dream. I'll think to myself that I'll see Myland in the morning when he gets home from work, but then I remember he's in the hospital. And other times when I see Myland getting chemo, I think "That can't be right, the guy I married, the father of our children, has leukemia?" I have to pinch myself every now and then to remind myself that this is as real as it gets. I just have a hard time getting my head around it sometimes.

So, I'm still training and fundraising for the Nike Women's Marathon on October 22 as part of the Leukemia & Lymphoma Society's Team in Training. (Thank you to everyone of you that donated. I've raised over $5500 so far) However, I've decided to run the half marathon instead. For obvious reasons, I haven't been able to train adequately for the full. I know I can squeak out 13.1 miles with minimal training, but 26.2 miles is way out of the question. We have coached runs every Weds. and Sat. and every run up until race day is dedicated to our patient honorees. Guess who is a patient honoree now? So at every training run I go to I have my own personal booster club. I leave every workout sore and tired, as well as inspired and empowered. I know Myland can also feel the vibes from all 180 members of the TNT San Francisco Run Team who are holding him next to their hearts as they pound out those miles.

At all my Team in Training events I wear the names of those I'm honoring on my race shirt. My sister and I have combined our artsy-crafty skills and came up with a momento honoring Myland for everyone on this season's Team to wear.


The "M" Heart

The Leukemia & Lymphoma Society's mission is to "cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families." The donations collected through Team in Training and many other Society events funds the research that goes into the development of the chemotherapy drugs that Myland is taking now. The funds also go towards patient services and the many other valuable resources that the LLS provides to make the overwhelming task of curing blood cancers not so daunting. I have taken advantage of a lot that LLS has to offer patients and their families and, believe me, it has enabled Myland and I to face this battle with more strength and vigor. The LLS has helped us and many many other individuals and families put the STRONG in LIVESTRONG!

You can donate on my personal fundraising webpage

http://www.active.com/donate/tntgsf/tntgsfCHui1

LIVESTRONG, BE STRONG!

Aloha & love,
Carolyn

No news is good news

August 14, 2006

Well, there's not much new to report regarding Myland's treatment. Dr. Hufford comes in every morning, throws his arms in the air, smiles and gives Myland one of those "What can I say? Everything is going as it should" looks. Myland responds by saying, "That's what I like to see, Doc. No news is good news."

Myland's blood counts are still hovering near the bottom, his immune system is still low, we're still limiting visitors, he's still receiving chemo and responding well - but most importantly, he still has that boyish grin, infectious laugh and is in great spirits.

After Dr. Hufford's last "no news" visit he left for vacation in Greece, but installed an international calling chip in his cell phone in case we need to call him. He told us that Myland is his #1 priority even while on vacation and assured us that we will be in the good hands of his colleagues while he is away. We have been so lucky to have the quality of care that Myland has been getting at CPMC. The nurses, doctors and everyone involved have been absolutely wonderful. They really do know the meaning of patient care. There's a sign in the kitchen that says "People may forget what you say to them, but they will never forget how you make them feel". Myland feels very well taken care of.

Myland is continuing the Linker Protocol today with the introduction of Asparaginase. This will be the 5th kind of chemo he's received so far. I'll try to give a brief rundown of the Linker Protocol for adult ALL. Please bear with me as I may get a little technical. I need to write this down as much for my reference as for your information. Feel free to scroll through this section if you can do without all the nitty-gritty.

The Linker protocol is named after renowned expert in hematology-oncology, Dr. Charles Linker. Dr. Linker is the director of the Leukemia and Bone Marrow Transplant Program for adults at UCSF Medical Center. His research interests include adult leukemia and the development of new treatments. It's a comfort to know that the guy who wrote the book on Myland's treatment is right here in our own backyard. The Linker Protocol to treat adult ALL involves a combination of several chemotherapy drugs administered according to a specific regimen. Chemotherapy drugs interfere with cancer cells’ ability to grow (multiply) or to survive.


Getting chemo while on the bike. Doping? You bet!
Move over Floyd, there's a new kid in town!

These are the chemotherapy drugs that Myland has received so far and how they act upon the leukemia cells:

1. Daunorubicin - an antitumor antibiotic that inserts itself into the DNA of the cancer cell, prevents the DNA from functioning normally, and kills the cancer cell. Administered intraveneously through PICC line catheter.
2. Vincristine - damages cancer cells by blocking a process called mitosis (cel