Info on Chemo and 1st Marrow Drive

Round 4 was completed without a hitch! I think a lot of this has to do with the fact that my oncologist reduced my chemo dosage by 25% for Round 4. The chemo not only kills off my cancer cells, but also destroys my healthy blood cells (white blood cells, red blood cells and platelets). Unfortunately, you can't pick and choose.

For most people receiving chemo, they will start to see their blood cell counts go up in a week or two after chemo treatment. However, my recovery has been a bit unusual. During Round 1, 2 & 3, the chemo was taking an extra heavy toll on my body. My white blood cell counts were unusually low for an extended period of time - like almost 4 weeks after each round. When your white blood cells are low (aka "neutropenic") you are extremely susceptible to getting sick. Unfortunately, this was what lead to a couple of nasty infections and fevers of 104 degrees over the last couple of months. My immune system could not fight off any illness.

Oncologists have a very difficult job. They have to give you enough chemo (poison) to kill off your cancer cells, but not too much to where your immune system is completely destroyed. This is why chemotherapy is an extremely dangerous balancing act. You can die from something as little as a cold when your immune system is down.

For Round 4, my oncologist reduced my dosage by 25% because we realized I am proned to getting infections. So far, my white blood cells aren't too low which means my immune system is still able to protect me. Thankfully, I was able to attend the 1st Project Michelle Bone Marrow Drive at the Fremont Thai Temple. We got 41 people registered!!! Carol said that AADP has been to the Thai temple in the past and only got 4-5 people registered. My personal goal was 30 people, so I am very pleased. We have 4 more drives this upcoming weekend. Please check out the calendar for more information!!!

Be Proactive

*Here's a picture of me on my laptop with my last bag of chemo during Round 4. Thankfully I have internet connection at the hospital. I keep myself busy by answering emails, posting journal entries, coordinating bone marrow drives and reading the motivating messages you have sent to me. Time flies. Thank you!

It is easy to take the backseat when you are receiving your treatment because you think there are plenty of doctors and nurses to take care of you. However, these people have many other patients and may only get to see you for about 10 minutes a day. I've learned that it is extremely important to stay on top of your treatment because you are the one that is dealing with everything all of the time. Who knows your body better than yourself?? Here are a few things that I try to do:

1. When you get admitted into the hospital, ask the nurse/doctor to give you a print out of all of the medication you will be taking. That way you can have a checklist to make sure you are taking the correct meds and dosages. Don't take medicines blindly without understanding what each one is for. There have been a few times when I was given the wrong dosage or wrong medicine. Once I took a medicine that I had never taken before because the nurse said I should take it. I should have declined, but I took it and it gave me the worst stomachache - I have learned my lesson!

2. Memorize all of the medications you are allergic to. Doctors and nurses will frequently ask you about this, so it is helpful to know them offhand or have a list in your wallet/purse that you can quickly refer to.

3. If you know that you occasionally get specific symptoms that require certain medication ask your doctor to add the medication on your chart as "PRN" a.k.a. "take as needed." That way, if the symptom arises (e.g. stomachache, headache, mouth sores, etc.), you don't have to wait for your doctor to prescribe the medicine or for the pharmacy to prepare it. This can take hours before you finally get the medicine. As a "PRN" medication, the nurse can give you the medicine as soon as you request it.

4. Make notes about your different nurses. Each nurse does things a little differently, so feel free to ask them to do things a certain way if it makes you more comfortable. Also, if you EVER feel uncomfortable with a nurse do not hesitate to ask to switch. This is your life on the line. Plus all of the nurses I have talked to say that you should feel comfortable to do this. Personally I am horrible at confrontations, but there are times that you need to stand up for yourself.

5. Feel free to ask any questions that are on your mind. I like to make a list of questions so when my doctor comes in for his daily visit I can write down his answers. It is easy to forget things when you have chemo brain.

6. Keep all of your medical receipts for your records. Also, you may be able to get some financial aid and reimbursement for some of your medical costs. Visit the Leukemia & Lymphoma Society website for more details.

7. Get a daily screenshot of your blood results. This makes it easy to track your counts on your own.

8. On the day you are getting admitted into the hospital, call 30 minutes before you are suppose to arrive to see if your room is ready. Even if Hospital Admissions tells you to come at a certain time, it is good to double check especially because it is hard to predict exactly when the patient before you will get discharged.

9. When you an outpatient receiving blood transfusions, it is also good to call the infusion clinic ahead of time to make sure the blood has arrived from the blood bank. A quick call can save you a couple of hours waiting for the blood to arrive.

10. The most important thing I've learned is that as a patient you can actively participate in your own treatment. My doctors and nurses let me help make important decisions like what medications I should take, whether I should receive blood transfusions, when I should get discharged from the hospital, etc. This is very empowering because my medical team really takes my feelings into consideration. Patients should feel completely comfortable expressing their opinion/thoughts to their medical team.

Common Misconceptions

I am on my 3rd day in the hospital. My doctor noticed that my skin is a little red today so he has me on IV Benadryl (25mg) every 6 hrs. I get very drowsy from it (both in pill and IV form) . For other sensitive people, it is good to ask your nurse to inject the drug slowly so your body can adjust to it. Sometimes if the nurse pushes the drug in quickly it hits me hard and I get choked up/paranoid because the drug makes me feel totally different. One minute you are alert, the next minute you feel like a zombie. It also helps to have a conversation while you get the injection to keep you distracted.

Today I wanted to talk about common misconceptions regarding the Bone Marrow Donor process. People have been asking a lot of great questions and I would like to try and clarify.

Quick Clarification
1. To register to become a donor, all you need to do is give a cotton swab sample of the inside of your cheek. They do NOT draw any blood to enter you into the National Marrow database. Basically, you use a Q-tip to rub the inside of your cheek the same way you would use the Q-tip to clean your ears. Your cheek cells will get onto the Q-tip. The doctor is looking for your cheek cells NOT your saliva.

2. Your Q-tip sample will then get tested for your tissue types. **One very common misconception is that your blood type must match the patient's. This is not true.** To perform a bone marrow transplant the patient's tissue type must match the donor's tissue type. Each person has many different tissue markers. Ideally, doctors prefer 6 different tissue markers between a donor and a patient to match before a bone marrow transplant (BMT) is performed.

Nowadays, doctors go even further by trying to match 10 tissue marker types. This reduces the chance of the patient's body rejecting the donor's stem cells. Your blood type is completely irrelevant.

3. When you get entered into the database you will be available for anyone who is looking for a donor. If you match someone, you will go in for more testing to make sure you are a good match. If the doctor selects you, you will get to decide if you still want to go through the process. Please note that you may be the only match that patient has. If you decline, the person will most likely die. It is important to stay committed as a donor.

4. You can donate more than once. So if you match both me and another patient, you can donate to both. I will not lose my opportunity for your donation.

5. There are two different ways to extract stem cells from a donor. Stem cells are what makes your blood cells. They live in your bone marrow. In Leukemia patients, our stem cells make cancer cells and do not produce healthy blood cells. As a result, we need a transplant from someone who has stem cells that will produce healthy blood cells.

5a. The first procedure is called the marrow donation process. First the donor will receive some pain medication. Next the donor will go into surgery to remove a core piece of marrow which will then be transplanted into the patient. The donor can expect to have pain that is comparable to "falling on your tail bone on ice." The pain/ache can last 1-2 days to sometimes a week depending on the person, but the procedure is normally performed outpatient. Back in the days, this was the only way to give the patient stem cells. However, today this is only performed less than 30% of the time.

5b. Currently, over 70% of the time, the doctor performs a process called Peripheral Blood Stem Cell (PBSC) Donation. This is where the doctor collects stem cells in your blood. First, you will be given daily shots of medicine for 5 days to make your body produce extra stem cells. This will cause the extra stem cells to leave your bone marrow and enter your blood stream. Then the doctor will collect your blood to extract the stem cells. They will have a machine that separate the stem cells from the blood. Once the stem cells have been collected, the rest of your blood will be transfused back into you. The procedure is similar to when you donate blood. This is a much less invasive than the marrow donation process.

6. One last type of transplant is called a cord blood transplant. This is the latest technology for stem cell transplants. When a woman has a baby, the doctor must throw away the umbilical cord and placenta after delivery. However, there are healthy stem cells in the umbilical cord and placenta. Women can agree to donate this waste and it will be entered into the National Marrow database. If there is a match, the doctor can extract the stem cells from these parts to transfuse into the Leukemia patients body. This does not harm the mother or the baby in any way.

7. There is no long term side effects for the donor. You will not get AIDS, hepatitis, etc. because the instrument used is sterile and bone marrow is being removed from you, not being given to you by someone else so there is no transmission of any weird diseases.

8. There is no cost to the donor. Everything is paid for by the patient and his/her medical insurance.

For more information please visit the NMDP website.

Round 4, here I come!

*This is a picture of my best friend (in the whole wide world) Mabel and me. We spent all of yesterday together just hanging out...good times. Can't wait for this year's football season to start! We already have season tickets (hoping I can go). Go bears!!


I'm getting admitted into the hospital today at 2:30pm. Got my bags all packed and I'm ready to go. I feel very healthy so I'm hoping that I can swoop in and swoop out of the hospital. Ideally I would only stay for 5 days, but something might come up (e.g. fever, infection, pneumonia, etc.) that would keep me in the hospital. I stayed an extra 6 days during Round 3 because of a skin infection.

The chemo regimen I'm on is called the "1-3-5" of High-dose Ara-C (aka Cytarabine). Basically I get chemo on the 1st, 3rd, and 5th day I'm in the hospital. More specifically, this means:
Step 1. Start first bag of chemo 1 "Dose 1" (each bag runs for 3 hrs)
Step 2. 12 hours after Dose 1 began, start Dose 2
Step 3. 36 hours after Dose 2 began, start Dose 3
Step 4. 12 hours after Dose 3 began, start Dose 4
Step 5. 36 hours after Does 4 began, start Dose 5
Step 6. 12 hours after Does 6 began, start Dose 6

Example:
1. Mon, 8/6/07 start Dose 1 at 7am, ends at 10am
2. Mon, 8/6/07 start Dose 2 at 7pm, ends at 10pm
*Tue, 8/7/07 - no chemo
3. Wed, 8/8/07 start Dose 3 at 7am, ends at 10am
4. Wed, 8/8/07 start Dose 4 at 7pm, ends at 10pm
*Thur, 8/9/07 - no chemo
5. Fri, 8/10/07 start Dose 5 at 7am, ends at 10am
6. Fri, 8/10/07 start Dose 6 at 7pm, ends at 10pm

Patients can get very nauseous or tired from the chemo, but luckily I have not had any real side effects from the chemo drugs (knock on wood). Plus you get a lot of "pre-meds" which are medicines that you take before you start chemo to prevent any side effects. You also receive eye drops every 6 hours to protect your eyes from infection. Ara-C which can leak out of the tear ducts in your eyes and cause an eye infection called conjunctivitis. I basically can't wear contacts lenses and I avoid rubbing my eyes during this period.

For me, the toughest thing about getting chemo is the timing of each dose. If you start your 1st chemo bag at 3pm in the afternoon, that means your next one will be at 3am. It is hard to get rest when your nurse is coming in and out during the middle of the night. I learned the hard way during Round 2 when my chemo started at 4am. It is important to ask your nurse to set the treatment on a reasonable schedule. I hope this time we can start at 7pm tonight.

If you don't experience any side effects, chemo is fairly easy...it's the weeks after the chemo that are tough.

Wish me luck! I hope (Che)Mo gives Leuk a good beating this round!

Maykin Memories

During the first couple of months of my treatment, I felt like life was passing me by and there was nothing I could do but to watch from my hospital window. Each time I was released from the hospital I was thrilled to get to do normal things like visit family and friends, explore the Monterey Bay Aquarium, go fishing with my brother, etc. However, this happiness soon went away every time I couldn't participate in something because of my illness.

I've been reading many books about Buddhism and they all stress the fact that impermanence is a universal fact. Neither pain nor pleasure lasts forever. Nothing lasts forever. Although I'm missing out on things, I am confident that there will be a "next time". I've been starting to detach myself from wanting everything and just appreciating the things I do have/can do. Plus I have already lead a very full life.

Just in 2006 alone, I...
1. Traveled to Vietnam with Mom
2. Explored the ancient ruins of Angkor Wat in Cambodia
3. Did a flip in the air on a flying trapeze
4. Landed 3 jumps in a row on my snowboard
5. Got promoted to Senior Associate at my work
6. Hiked up to the top of Half Dome in Yosemite (16 miles!!)
7. Performed Thai Classical dance (my most beloved hobby) with the Berkeley Temple

AND even today my life is very full of love and laughter. Never did I imagine having Leukemia would give me so many opportunities to eat cake. Thank you for all of the brunches, dinners, and parties thrown for me!

So I hope you will not feel sorry for me just because of this small bump in my road. I am truly blessed.

Maykin a Commitment as a Marrow Donor

(If you haven't already noticed, I am a big fan of my last name)

As a Leukemia patient, I am constantly learning new stats about my treatment.

"There is a 50% chance that your cancer will relapse. "

"Your siblings have a 25% chance that they will match" Unfortunately, my sister and brother did not match.

"About 13,410 Americans are expected to be diagnosed with AML in 2007."

"There is a total of 6.6 million individuals registered on the US Marrow Registry. However, there are only about 8,000 (.1%) Vietnamese and 3,200 (.05%) 'Other Southeast Asians' (Thais, Laosians, etc.) registered."

"On any given day, there are over 6,000 patients looking for a bone marrow donor match."

One of the most alarming statistics I read recently was from an ABC article (7/2/07) about my friend Vinay Chakravarthy's search for a bone marrow donor.

"The NMDP estimates that for people of Asian origin, only 50 percent of identified donors become available for a match. There are often three reasons why donors are unavailable. The NMDP either can't track them down; the donor has health issues that prevent them from donating; or they simply refuse."

This is very sad to hear. We already know that it is extremely difficult for ethnic minorities like me to find one match. To make matters worse, the odds of my potential donor turning down the opportunity (and quite possibly the ONLY opportunity) to save my life are so high. 50%?!?

I know we always talk about how easy it is to donate to convince people to sign up, but what we really need to stress is the true challenge for those who register. As a registered donor, will you rise to the occasion when you get the phone call from NMDP to tell you that you are a possible match? Will you agree to take time out of your busy life to do additional testing? Will you update your contact information on the NMDP registry when you change addresses? Will you agree to donate if you are the selected donor???

I encourage you all to take the time to read up on the donation process so that when you register to become a donor you are completely committed.

Tonight, I would like everyone who has registered to post a comment to let me know that you are "maykin" a commitment to the National Marrow Donor Program.

Thank you!

Maykin New Friends - Red Mystique

After round 3, I went home with some antibiotics to control my staph infection. Three days after getting discharged, I noticed that my cheeks looked very flushed and there were small red bumps on my arm. This soon exploded into a huge blotchy red mess all over my body. When I say all over...I mean allllll over. I felt like Mystique from X-Men, except instead of blue I was red and instead of hot like Rebecca Romjin, I looked like a lobster. My face swelled and my body was very hot and itchy. Turns out that I was allergic to the antibiotic Bactrim.

Interestingly, I took this drug after Round 2 and had no side effects. My doctor says that your body can become more sensitive to drugs over time. Good to know! I stopped taking Bactrim, loaded up on Benadryl and after 10 days the rash went away, but the red spots have turned into little dark spots...kind of like how skin looks when you are really cold. The doctor says it should completely go away with a little bit of time and sun.

Initially, I thought it was more funny than anything because I looked so ridiculous, but my poor mom definitely wasn't laughing. So far we've learned that I'm allergic to 3 antibiotics (2 we discovered during Round 2, and now Bactrim). The list of ailments and allergies keeps on getting longer and longer. We decided to give each new ailment an evil villain name. Luckily, I haven't made too many evil friends over the last 6 months and my fingers are crossed that Red Mystique will be the last wicked pal that comes to play.