Blog
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Friday, May 1, 2009 - 11:31 pm
Biopsy Results – 30% Too Much
We got the results from the biopsy yesterday and they aren’t good. Michelle has 30% blast cells in her marrow which means she is not in remission and we’re going to have to be more aggressive.
We have a general idea of what’s to come. First step is some sort of chemotherapy to get her in remission. If this succeeds, she may do another transplant (if that is the course of action we determine is best). Details on transplant are TBD but it would definitely be in Seattle.
Michelle’s case will be presented to a broader group of doctors in Seattle, and we will get more official recommendations (specific chemotherapy regimen, pros/cons of another transplant, etc.) from our medical team next week. We’re guessing that chemo will start late next week or early the following week depending on which drug they want to use and which hospital can administer it. We are hoping we can stay in the bay area for this round of chemo so that we can at least spend the next 2 months close to family and friends.
Michelle is doing okay with the news. She’s definitely scared…dreading the thought of going through another transplant…feeling guilt with how this impacts everyone’s lives….feeling sad about leaving family, friends and Marshawn. Overall, she’s doing well, and physically, she feels and looks great. And most importantly, she hasn’t lost the desire to keep fighting for her life. There ain’t no quit in this girl.
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Monday, April 27, 2009 - 3:51 pm
Rest in peace Carolyn
As we drove to my biopsy today I thought about my dear friend Carolyn Tam. She was a fellow cancer warrior from Canada. We exchanged many encouraging emails and I always enjoyed our gmail exchanges. Although we never got to give each other a hug in person, I was inspired by her drive, optimism and energy. She was one (very beautiful) tough cookie and endured many obstacles throughout her treatment. Even during the toughest times, there was always hope in her voice. She never ever gave up.
I woke up several times last night with butterflies in my stomach because of today’s biopsy procedure. Normally I sit on pins and needles until my results come in, but after the procedure I feel strangely calm and grounded. Like Carolyn, no matter what my results reveal, I will not give up. I will continue to fight. There is too much to live for.
In memory of Carolyn, please get your friends, family, and anyone else you know registered on the bone marrow registry. Thank you.
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Wednesday, April 22, 2009 - 4:25 pm
A Glimpse of Michelle from Another Perspective
A blog entry written by a friend:
I often forget that of the hundreds and thousands of eyes that come upon this site, most have probably not met Michelle in person. I have the fortune of calling Michelle and Van my friends and I’m lucky enough to get to hang out with this awesome duo every so often. And although you haven’t had a chance to meet them in person, you’ve grown to know them through this website. I asked Michelle if I could write a quick blog to provide you a glimpse into her life. I imagine it to be exhausting for such an unselfish person like Michelle to constantly write about herself, so when I asked, she complied.
I visited Michelle recently at her mom’s house and she looked like, well, Michelle (minus some hair). I was expecting a physically and emotionally exhausted cancer patient and instead, I found my buddy Michelle, the same Michelle I’ve known for years, sitting on her bed, relaxed and laughing at the absurdity of a reality show on TV. I didn’t know what to expect myself and admit that my own emotional fragility made me apprehensive about seeing my friend in her relapsed state.
Michelle is surrounded by a variety of bags and plates of food, her sister Melanie and Kevin, Marshawn, and her mom. Amidst the scene, her mom frequently pops in to make sure everyone, especially Michelle, is fed and comfortable. Everyone is paying an absurd amount of attention to little Marshawn, and soon I join the fray. Before this leukemia business decided to lurk into her life, I would come over to Michelle and Van’s apartment to mooch off of their DVR, and would find them lounging on their couches, watching their favorite shows, munching on snacks, (recently) teaching Marshawn new tricks and providing their blunt commentary. This visit was no different, except that Van was away for a buddy’s wedding.
So on to the objective of this blog entry: what do you not know about Michelle? Well, Michelle is blunt. She’ll always tell you like it is. And it happens to be that I’ve been traveling a lot lately, so she comments, “You look tired. You have bags under your eyes.” To which I reply, “You’re totally right. I’ve been working a lot lately”. To vouch for her bluntness, I really have been looking like crap lately.
Michelle has sharp taste buds. Her tongue and nose have always been able to discern the subtle nuances in food. She can tell you what spices are in what, what’s too rich, what’s just right and Yelp about it immediately. The chemo has thrown her epithelium amok, and despite her previous hatred of rich, creamy foods, she explains to me that she often finds herself craving those very things. Ironically, she no longer craves the Vietnamese food that she and I can often talk on and on about. So of course, I enjoy a bowl of pho made by her mom right in front of her and she tries not to smell it and become nauseous.
As the minutes go by, I find myself completely at ease with Michelle. Another thing you don’t know about her, but she’s one of the most even-keeled people I know. She takes on challenges as easily as walking down the street. Chinese drink made of herbs (it’s not as pleasant as it sounds…it’s black, thick and really pungent), no problem! She quickly drinks it before my eyes. I take a sip and nearly hurl.
I wouldn’t feign to understand what emotional and mental exercises she must go through daily, but what I do know is that from the ups and downs, she continues to handle it in her own way. I guess the best way to describe this is that she’s seems to be at peace with herself. She simply exudes this in every way. Michelle manages to take my apprehension about her relapse, my concerns, my worries, all of my anxieties and tuck them away neatly somewhere in my full tummy of beef and noodles. I simply indulge in hanging out with my buddy, not my buddy with cancer, on a warm California night.
We talk about a broad range of trivial topics in between scatterings of discussions of the melodramatic things that plague the life of 20-somethings…the meaning of life, relationships (or a lack thereof), careers. The minutes prove to be an unrelenting force and I can see Michelle’s eyes get heavier. It’s about that time to say goodbye.
She walks me downstairs and I give her an obligatory noogie on her soft head. The door shuts behind me, I sit in my rental and immediately realize how much I enjoy hanging out with Michelle in the most ordinary of circumstances. This is exactly why Michelle has her legions of fans: from the most complex situations to the most ordinary circumstances, she somehow manages to make every moment she shares with you extraordinary. I can’t help but feel a sense of happiness and warmth as I drive away.
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Monday, April 20, 2009 - 1:16 pm
Update – Day 150ish (I’ve lost count)
My counts remain stable except for my hemoglobin. My wbcs are around 3.8 – 4.0 which I think shows that my immune system is getting stronger. I got a red blood cell transfusion last Tuesday and it gave me a boost of energy (I am realizing that headaches start when my hemoglobin starts to drop). I went overboard on some kettlecorn last Friday (fresh from the farmer’s market, DELISH!) and threw up, but other than that no nausea or vomiting. The skin GVHD is being managed by my topical steroid cream and it doesn’t bother me at all. I’ve almost completely de-puffed in my face and am back to my original weight pre-transplant. Man, if my last biopsy didn’t say I had relapsed, I’d think that all is well.
It’s nice having the energy to get things done. Recently Van and I did our taxes (1st time as a married couple – YIKES it still sounds weird when I call him my “husband”). I’m finally caught up on all of my mail, medical bills, unpacking from Seattle, applying for LLS financial aid, responding to emails and reconnecting with friends. I also treated myself and went to the mall to get an outfit for our good friends’ upcoming wedding. Trying to find a dress to cover my hickman line is a lot harder than you would think! I can’t express how happy I am that I’m not stuck in bed these days. The Cali sunny weather has done a bit of good on my spirits.
The Big Biopsy Day is next Monday and I’ve been doing loads of visualizations, self hypnosis and praying to ensure that all goes well. I continue to see the Chinese herbalist doctor weekly. In addition to weaning off most of my drugs, I think the herbal medicine has helped a lot. Update* I forgot to mention that my Kaiser oncologist was the one who referred me to the Chinese herbalist doctor. My oncologist actually gets treated by the Chinese doctor and the referral gave him the credibility I needed to trust him. It’s great because my oncologist and my Chinese herbalist talk to each other to make sure that they are on the same page with my treatments.
Thanks for checking in on me.
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Tuesday, April 14, 2009 - 1:47 am
Having Some Fun While in Limbo
The past two weeks have been stable on the medical front and that has been a very welcome sign. There haven’t been any unexpected surprises in terms of Michelle’s counts. It’s been over 6 weeks since Michelle relapsed, and the odds were that these cancerous cells would multiply rapidly. I’ll give you an example of how quickly moving or “acute” Michelle’s AML is. Prior to Michelle’s 1st relapse last April, Michelle had a quarterly checkup and blood draw on a Thursday, and everything checked out okay. By Sunday, Michelle started to get pounding headaches that indicated she had relapsed. So we are definitely concerned with Michelle’s AML proliferating rapidly.
However, blast cells have not spilled over into her bloodstream which means there is something working in Michelle’s favor that is presumably fighting back her cancer. As mentioned in previous posts, Michelle is now completely off of her immuno-suppressants which, in theory, should enable her donor cells / immune system to attack leukemia cells in her body. We will know for sure what’s going after Michelle’s bone marrow biopsy on Monday, April 27th.
In addition to this, we’ve started seeing an Asian herbalist with the hope of boosting Michelle’s immune system. Every night, we heat up a concoction of herbs in water for 2 hours in a special claypot, and Michelle has to stomach the drink that pours out. Actually, Michelle has the bad habit of determining ahead of time whether she will like any food or drink, so I thought she was being a drama queen when she made faces and sounds as she drank her medicine. I tried a sip of her drink and can attest that it’s pretty bad.
Historically, we’ve resisted going down the path of Eastern medicine. Not because we don’t think there is value to herbs that have been recommended to us. It’s been more because we have had no way of determining who to trust and what to take. More importantly, we didn’t want to interfere with any medications, especially chemotherapy, that Michelle was on. In fact, we were given specific instructions to not take any herbal medicine in Seattle. Since Michelle is not currently on chemotherapy, we felt that it was worth a shot. We’re not sure if it’s a coincidence, but Michelle started feeling a lot better pretty much as soon as she started taking her herbal medicine. Her energy has been a lot better and her nausea has subsided quite a bit. She still has some recurring headaches and some generally bad days, but these are less frequent.
We’ll probably never really know whether it’s the Chinese herbs truly working or it’s just the placebo effect. At this point though, I’m not going to question the source of these positive outcomes. Instead, we are focusing on taking advantage of the days Michelle does have energy to go out and have some fun. On top of eating out a lot and getting a very welcome visit from a good friend, here are some of the things we’ve done the past couple of weeks…
Confused at the Mystery Spot:
Stuffing our faces with funnel cake in Santa Cruz:
Going to the shooting range:
Feeling like kids at the Jelly Belly factory:
Celebrating Michelle’s Dad’s Birthday with the family:
Celebrating Mabel’s heritage at the Cherry Blossom Festival:
Truly embracing Mabel’s heritage by taking ridiculous Japanese photo booth sticky pictures:
And of course, obsessing over our lil Marshawn:
Yes, he really fell asleep like this.
