ARG

Managing your treatment can be a big fat headache. Even though I try to stay on top of things, sometimes you just have to throw your hands in the air and say "I give up! Nothing I can do can control this situation. I'm just going to let nature take it's course and hope everything will work out."

Today was one of those days. I got my blood tested at the Fremont infusion clinic at 9am this morning. My results came in electronically through email around 11:30am. Here are my counts with the normal range in (__):

WBC: 0.7 (3.5-12.5 K/uL) - LOW
RBC: 2.60 (3.60-5.10 M/uL) - LOW
Hemoglobin: 9.4 (11-15 g/dL) - LOW
Platelets: 13 (140-400 K/uL) - VERY LOW

As soon as I got my results, I emailed my doctor and called his nurse to let them know that my platelet count was very low and that I probably needed a transfusion (I tranfuse when platelets are below 20). In my message, I asked if I could get the transfusion at the Walnut Creek clinic since I was already planning to come to the Walnut Creek Hospital for my scheduled check up appointment with my oncologist at 3:40pm. (FYI, it's about an hour drive from Fremont to Walnut Creek)

For me, platelet tranfusions wipe me out because I take Benadryl to limit any allergic reactions. I get crazy hives when I don't take Benadryl before my platelet transfusions. Ideally I wanted to get the transfusion after my doctor's appointment so I could go straight home and rest.

My doctor's nurse called at 12:30pm and said that I should get the transfusion at the Fremont clinic because everything had already been ordered there. She said she was going to call Fremont to make sure everything was in order. By 2pm I had not heard anything from either my doctor's nurse or the Fremont clinic. I called both locations and left more messages to let them know I was still waiting to hear back from them and that I was planning to head to Walnut Creek for my check up. Fremont called me back to say that they had not ordered the platelets because they agreed that I should get the platelets at Walnut Creek. My doctor's nurse called again and said that I couldn't get the platelets in Walnut Creek because she had not arranged anything. She said that it shouldn't take Fremont that long to order the platelets (even though in reality it always takes about 2-3 hours to order them). I argued that if it wasn't going to take Fremont that long, why couldn't it be just as easy to order them in Walnut Creek. After multiple calls back and forth, it was finally decided that I would cancel my doctor's appointment in Walnut Creek and get my transfusion in Fremont at 4pm before they close for the weekend.

At the end of the day, everything worked out. However, this whole ordeal took up my entire morning and it just made me realize how difficult it must be for people who speak English as a 2nd language or older people that don't have the energy to deal with all of this. How frustrating...

Round 5

On Monday, 9/17/07, at 4:30pm I checked into the hospital for my 5th and FINAL round of chemotherapy. My 1st bag of High dose Ara-C (aka Cytarabine) started at 9:30pm and ended at 12:30am. This is great because the nurses don't have to come in my room during the middle of the night. So far, so good - No major side effects or infections in sight. Hopefully, I can ditch this joint by Saturday afternoon if all things go well.


It is hard to believe that this is coming to an end. When I first got sick, I could not wait to be finished with my treatment. I thought
6 months was going to feel like an eternity. I was so excited about being "normal" again. Now that I am well into my 7th month of treatment, I am shocked at how fast time has flown by. Although I am looking forward to my life post-chemo, I am very nervous about going back into the "real world."


I know that I have to remain positive, but being the worrywart that I am, I cannot help but to feel a bit scared. For the last 7 months, my cancer has put my life on pause. Once the play button is pressed, I must go back to the grind of work, regain control of my life, and sort out my future. I am hopeful that my transition will be painless and easy, but I surely have my doubts. Of course there will always be the voice in the back of my head to remind me that there is a good chance that I can relapse at any minute.

Luckily, I know that I can count on my family and friends to help me sort things out. One of my favorite places I always turn to for support is the Wat Buddhanusorn Thai Temple in Fremont. The pictures are from my recent visit to the temple. I grew up at the temple and I love coming back to see familiar faces and to catch up with all of my "aunts" and "uncles." These people have always been by my side and have molded me to what I am today. I can not thank them enough.

Don't get me wrong, I am definitely looking forward to the end of my treatment. I just wanted to share with you some of my thoughts.

Maykin Use of Time

Organizing bone marrow drives have become a full time job for me. I am fully absorbed in the process and I have to remind myself daily that there are other things I should be doing i.e. eating regularly, drinking water, taking my medicine, meditating, etc. Setting up drives have become a bit of an addiction. Once you complete a drive, there are always so many other people and groups you can contact to get another one going. This is extremely motivating and exciting to me, but also overwhelming at the same time. Unlike a project at work that has a completion date, the work for bone marrow drives never ends. However, my good friend Linh recently reminded me that all of these drives are happening because of me. This makes me motivated to dedicate my time to make them happen. Plus seeing other people work on the drives also inspires me to do more.

This past weekend we got 23 people to register at CaliToday. The drive in Houston was a great success too with 105 people registered. Thank you so much Chu Nam and Dr. Julie Nguyen for hosting these drives. I am happy to report that our new total is 825 people registered!

At the CaliToday drive, there were many senior citizens that came to register. Unfortunately, they did not meet the age requirements (18-60), but I was very touched that many of them walked or took the bus to get to the drive. This cute grandma in particular initially told us she was 59, but we looked at her driver's license and it said she was well over 70. She tried repeatedly to persuade Carol, the AADP Executive Director, to let her register. She said that she was confident that she was my match. She said even though she was over the age limit she was completely ready and willing to sacrifice her marrow. She refused to take no for an answer, but we eventually had to turn her away for her own safety. I was very touched by this lady and I wish that we will meet more selfless people like her at our drives (within the age limit).

People have been asking me what else they can do if they have already or can't register. Here's a short list of ideas:
1. Spread the word to your family and friends and encourage them to register.
2. Help organize a bone marrow drive.
3. Volunteer at a bone marrow drive .
4. Volunteer at AADP. This small team of people work day and night to help patients like me find marrow matches. They are always open to a helping hand whether it's fundraising, making test kits, etc.
5. Fundraise for a cause. A few off the top of my head are: AADP, NMDP, LLS, CLLF, etc.

Wedding Trip

For the Labor Day Weekend, I attended the wedding of my dear friends, Ami and Veeral at the Biltmore Hotel in Los Angeles. Veeral is one of Van's best friends. I have always been a big fan of weddings, but unfortunately have missed 6 of them this year because of my illness. (I am one of those girls that can watch hours of The Wedding Story on TLC. Weddings are always full of excitement, drama, love and good food. What's not to love?)

We were very nervous that I wasn't going to be able to attend this wedding because my counts were still low from Round 4. Luckily, my oncologist gave me the approval to fly to Los Angeles to attend. It was by far the most spectacular bash I have ever been to (and may ever go to). We had a fantastic time not only because the lovebirds had thoughtfully planned out every single detail of the perfect party for their guests to enjoy, but also because there was an amazing sense of bond and positive energy throughout the weekend. The serotonin levels were off the charts!

Over 600 people gathered to celebrate the love between Ami and Veeral. I was very honored when Veeral recognized Van and me during his speech. It was a total surprise resulting in uncontrollable tears from the both of us. All of their friends and family showered us with unconditional love. Considering that Veeral and Ami are two of the most caring, thoughtful and loving people I know, it only made sense that their friends and family would be of the same pedigree.

For a short time, it made me forget about Leukemia, bone marrow drives, chemotherapy, blood draws, medicine, etc. It was an unforgettable experience.

Congratulations Newlyweds! I love you guys!

Upcoming Drives

Thank you to everyone who has expressed interest in hosting a drive. I really hope that I can help others host their own drives.

Our last couple of drives have been pretty good. So far we have gotten 697 people to register. There are 2 drives coming up this week. One in San Jose and one in Houston. Dr. Julie Nguyen and her team of friends and family have put a ton of work into this upcoming Houston drive. Just in the last 3 weeks they have done the following:

1. Recruited 24 volunteers to help at the drive
2. Got the Kim Son Restaurant to set up tables and provide drinks and a banner.
3. Spoke on Saigon Houston radio and Vietnamese American Broadcasting (VAB) to raise awareness on this effort.
4. Solicited ideas from Hoa Lu and Milby members about other ways to promote this cause.
5. XayDung magazine published over 1000 copies and distributed a ll around Houston with my picture and great articles about leukemia and bone marrow drives. Also posted flyers all around Houston.
6. Created PROJECT SWAB (Save With A Brush) in collaboration with Dentist Anna Marie Nguyen to swab all of her patients' mouths. They are also trying to get other dentists involved.

This is just one example of the many groups of people who have graciously helped us promote this cause. Thank you so much for all of your hard work, love and support!

Getting closer to the finish line.

Time is flying by faster than I would like it to. I can't believe I am at the end of another week. I don't know where my time goes these days and I still have a long list of things I want to get done (work on the website, send letters to politicians, write emails, finish my real estate course, make a video encouraging folks to register, etc). I blame my procrastination on the chemotherapy. A common side effect of High-dose Cytarabine is fatigue. I'm not tired to the point that I need naps all of the time, but I've noticed that it just takes me longer to do things.

My wbcs have not stabilized yet which is consistent with my previous rounds of chemo. Yesterday, my wbc = 1.7 (normal range = 3.5-12.5), so I had to give myself another shot of neupogen to boost my stem cells to produce more white blood cells. Even though I've probably given myself over 30 shots, I still haven't gotten used to the initial piercing of my skin. I still have to take a deep breath and give myself a quick pep talk..."Don't be a wimp Michelle! It's not a big deal. Just get it over with!" When it's over, I sigh with relief and go on my merry way. FYI, it doesn't hurt that much.

Luckily, I have not caught an infection despite the fact that my immune system is still weak. I try to avoid public areas and large crowds of people. My doctor just told me today that my 5th and final round of chemotherapy will begin on Monday, September 17th. Then after that, I'll have about 2-3 months to recuperate from the chemotherapy. Hopefully my energy will come back. Once round 5 is over, I will just wait and see if I relapse. If I do relapse (50% chance), I will need a bone marrow transplant. I am praying that I don't relapse.