Blog
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Friday, July 3, 2009 - 1:32 am
Leaving No Stone Unturned
First, wanted to thank everyone for all the support. Your messages of encouragement, compassion and love mean a lot to Michelle and the family. This past week has been busy and stressful but has also been positive as we prepare for our last fight.
We’ve spent long days with our herbalist and have been diligent about all that he has asked us to do, which includes getting lots of rest, taking herbal medicine, practicing Qi/Chi Gong, and sticking to certain dietary restrictions. It truly is a comprehensive treatment plan that has been focused on building Michelle’s strength and is now transitioning to fighting her cancer. Considering that Michelle underwent a transplant 7 months ago and chemo just 21 days ago, it’s amazing how great she feels and looks. People that see her in person can’t even tell she’s sick, except for the fact that she has a bald (and beautiful) head.
On the Western medical front, we’ve been working on ensuring that there indeed were no other options, as our oncologist had indicated last Friday. We’ve traded emails and spoken with doctors in Seattle who have helped us evaluate the viability of Clofarabine, a more standard chemotherapy agent, and Mylotarg, a “targeted” chemotherapy agent. We’ll spare everyone the details…the end result of lots of research and discussion is that both drugs could work for Michelle but aren’t very promising. We’ve heard words like “rare,” “long shot,” and “hail mary.” The overall conclusions in Seattle are that if we choose to continue fighting with Western tools, it’s NOT unreasonable to think they could be successful, but we must be aware of the risks, which could be fatal. Ultimately, we could be shortening Michelle’s life even more with these desperate measures. Lastly, we also had a consult today with another oncologist at Kaiser who essentially agreed that it was best not to pursue these other options.
So, although these are never terms or conclusions you want to hear associated with your remaining life-saving options, it has been important for us know where exactly we stand so that we can more confidently commit to our Eastern treatment without second-guessing ourselves. One of my goals this week was to make sure there was nothing compelling out there that we didn’t know about, and I think this goal has been achieved. For all those individuals that helped me by staying up late at night, helping me think things through, pulling favors with colleagues, poring over medical research, etc., words can’t express the gratitude I feel. Thank you so much.
Lastly, I just want to say that although we understand the position we’re in today, we remain hopeful. There are so many success stories walking in and out of our herbalist’s center every day. It’s absolutely amazing. We hope we’re the next ones. With this in mind, we’ve been able to stay remarkably light-hearted. We cry a lot but we laugh more. For every sad moment that we share during the day, we have many more where I step back and realize how much our family and friends love Michelle and each other. We’ve been given a rare gift…a sort of advance warning that is truly bittersweet. We’re going to relish the sweet and worry about the rest later.
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Monday, June 29, 2009 - 3:51 am
How Do You Know When to Stop Fighting?
This past Monday, one of our biggest fears started to materialize when we saw that Michelle’s daily CBC showed 8% blast cells in her peripheral blood. A feeling of disbelief came over me. Could this really be happening merely 10 days after her last bag of chemo? Our doctor told us to wait a few more days before getting too scared. Tuesday – 0%. Good. Maybe the Monday CBC was just a fluke. Wednesday – 1%. Okay, so maybe we’re just dealing with some random floating blast cells. Nothing another round of chemo couldn’t fix. Thursday – 6%. Friday – 12%. Shit.
Looking back on the past week, I guess I had naively blocked out the implications of what blast cells really meant for us. I sort of carried on hoping we could do more chemo. But on Friday, Michelle and I had an all too sobering and surreal meeting with our oncologist Dr. Johnson. Simply put, Michelle’s cancer had proven to be chemo-resistant. This was no more apparent than after this past round of chemo. It’d be one thing if Michelle had reached remission and her blasts didn’t show up for another few months. That’d at least give us time to do some more chemo and get ready for another transplant. But after 10 total rounds of chemo since 2007 and after two relapses, you have to start facing what your body is telling you after your cancer comes back within 10 days.
I asked him what else, if anything, he could offer us? All he could do was prescribe Hydrea/ Hydroxyurea – a drug that just interferes with the growth of cancer cells. Basically, a way to extend Michelle’s life for a little bit longer. Not a cure.
And then Michelle asked him how long he thought she had even with Hydrea. I saw Dr. Johnson hesitate. Of course, this was not a question he truly wanted to answer. Not only is it difficult for doctors to predict anyone’s fate but no doctor wants to tell their 27-year old patient how much more time they have to live. Reluctantly, he answered his best guess: 4-6 weeks. When I heard him utter the word “weeks,” a cold feeling came over my body. I started panicking inside…tears flowing down my face. Weeks? I would’ve bet anything he was going to say months. Michelle looks so good…so healthy. It doesn’t make any sense.
I don’t know how you’re supposed to feel or process that type of news, and I guess you’re never really prepared for something like this. The best way I can describe it as is a scene from a movie. I glanced over at Michelle and then at Dr. Johnson and then turned back to Michelle – tears now running down her face.
Without exchanging words, Michelle and I were on the same page. I asked Dr. Johnson if he would support us if we explored Eastern treatment and he agreed. Despite traditional Western medicine failing, we knew we could still turn to Eastern medicine for one last shot. So now, our plan is to commit even more time and energy to our Vietnamese herbalist. Up to this point, we had only asked him to complement Michelle’s western treatments. Now, we would ask him to help cure her.
Tomorrow, we are going to make a few calls to other hospitals to make sure we are not missing anything else in terms of Western treatments. I hope we find something intriguing, but realistically, I don’t think we’ll learn about anything compelling enough for us to want to break down Michelle’s body more and risk putting her in a state where even our Vietnamese doctor can’t help. We feel lucky that Michelle is even out of the hospital after this last round of chemo. In fact, Dr. Johnson was afraid she would never get out and that she would be in hospital for months as that had been his experience with other patients going through the same thing.
So how do you know when to stop fighting? That’s the question that’s been running through my mind the past 64 hours. I understand though that I can’t answer that question for Michelle. If it was up to me, she would keep fighting until she had nothing left. But that’s because I’m afraid of being left here without her by my side. My heart aches when I think about the void and emptiness I would experience. I just don’t want my life to be drastically and forever altered.
For now though, I am relieved that Michelle is not ready to give up. She’s realistic about the future but still holds out hope that a miracle can happen. From a selfish perspective, that’s all I can ask for.
Before Michelle went to bed, I asked her if there was any message she wanted conveyed in this post. She just wants everyone to know that she’s doing well. And that she’s okay.
She’s mentioned several times this weekend a sense of relief. I can only guess that’s how one feels after fighting for one’s life and going through this for so long. Whereas everyone around her can escape, Michelle can’t. She goes to sleep every night with anxiety over the cancer inside her body. And she wakes up every morning realizing this long nightmare continues.
This past Friday was my birthday and Michelle had already planned a joint birthday celebration for her best friend Mabel, our good friend Eric, and me. Michelle didn’t want to let this news drag us down so she pushed us to still go out and celebrate our birthdays. She even came out. I can’t remember the last time Michelle’s been out to a bar. She said f it. The theme was “I heart the 90’s.”
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Wednesday, June 17, 2009 - 8:43 am
I Know Why the Caged Bird Sings
I’m free (sort of)! It feels good to be home. Overall my stay at Hotel Kaiser was fine. My fever went away by Friday evening and I really think that if my oncologist was on-call he would have discharged me over the weekend. In any case, I got discharged on Monday. I have daily blood draws. Yesterday my platelets were at 7 so I got a transfusion. For the first time in over a year I had an allergic reaction. In the past I basically break out into hives and become an itchy ball of fire. However, yesterday my left eye became irritated. It got red and puffed up. My nostrils immediately plugged up. I also had an itchy throat, tightness in my chest and a dry cough. I felt sorry for the lady sitting across from me. She just started chemo and already looked scared. I tried to comfort her, but then I had the allergic reaction which was not a pretty sight. I kept telling her that I was fine, but I don’t think I was very convincing. haha
Counts are all low, but that means the chemo is working. All in all, I’m a happy camper. No blues for this gal today.
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Sunday, June 14, 2009 - 12:53 pm
Happy Birthday Dear Mom & Marshawn
My fever went away Friday night, but since my oncologist isn’t working this weekend, the on-call doctor doesn’t feel comfortable letting me out of my jail cell. I am sure I’ll get released tomorrow. The chemo seems to be doing its job. Yay! My wbcs were 32 when i got admitted (high) but plunged after i received my cocktail. Today, it’s at 0.5 even after my Neulasta shot yesterday morning. Along with the drop in wbcs also comes drops in all counts across the board. In just the last few days, I’ve received 4 units of blood and two bags of platelets. I think I might be turning into a benadryl addict because I get excited when I get it. It’s nice to be mentally numb in Lalaland and get some delicious naps in.
I think my chemo cocktail might have been spiked with Serotonin because I feel content and calm. It’s nice and peaceful here. Check out my window view.
Fortunately, no nausea or mouth sores. Just some loose stool which is a small price to pay for chemo.
The biggest bummer is that I missed my mom’s and Marshawn’s bday again on 6/11 and 6/14. We took my mom out on Monday for an early bday dinner. Today, Van is going to take our little guy to a yorkie meetup in SF. He deserves a day to himself because he always brings joy to everyone. It’s a Luau themed Pawty - cute eh?
So far so good.
Michelle
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Saturday, June 13, 2009 - 3:10 pm
Done with Chemo but Still in Hospital
Michelle received her third and last dose of MEC chemo on Thursday night. If all had gone well, she would’ve been discharged on Friday afternoon and been able to go home. Unfortunately, she developed a fever a couple of days prior to being admitted into the hospital, and the fever has persisted. Because our oncologist doesn’t want her to leave until the fever is gone, it doesn’t look like Michelle will be released until Monday at the earliest.
Meanwhile, Michelle has received plenty of platelet and blood transfusions. The chemo has dropped her counts very quickly. She’s also had two visits from her herbalist who drove all the way from San Jose to Walnut Creek to see her (thanks Dr. Ta!).
Overall though, Michelle is feeling pretty good — good energy (she walks every day) and is alert most of the day unless she’s been hit with IV benadryl.
