A fond goodbye to Uncle John and to Cousin Jihae; it was great to see you (and Aunt Deokhui) again. Again, many thanks for your patience with my cooking, and for doing the dishes after each meal.
Many thanks to Mr. and Mrs. Quigg for stopping by later in the day, despite the horrible weather. Mom enjoyed seeing you both. Thanks, as well, for the massive amount of meat you gave us!
Finally, a note about the house: the hard rain today seems to have revealed a flaw in the renovation: the sliding glass door that leads into our new dining room (formerly an old, grungy porch) began leaking. Strangely, the water was squeezing itself out from the top of the door frame. Dad called our contractor, and I took a quick video of the leak as it was happening.
UPDATE, 11:28PM: The contractor will be stopping by this week-- possibly as early as Monday-- to fix the problem.
Saturday, August 22, 2009
A fond goodbye to Uncle John and to Cousin Jihae; it was great to see you (and Aunt Deokhui) again. Again, many thanks for your patience with my cooking, and for doing the dishes after each meal.
Friday, August 21, 2009
Mom had her last day of standard radiotherapy today; tonight will be her final night of chemotherapy through Temodar. What happens next depends on what we hear from NCI.
There was a huge downpour when we left the hospital (my uncle and cousin were with us); by the time we had driven to the Telegraph Road exit of Route 495, there was no rain to be found anywhere. We took the scenic route, crossing Route 1 and hitting the George Washington Parkway between miles 6 and 7. From there, we drove south to Fort Hunt Park, and Mom had a chance to stroll a few hundred yards.
Mom also saw Dr. Royfe, her primary care physician, this morning. He told Dad that Mom's blood sugar problem might be related to the high dosage of Decadron (steroids) that she's taking. The doctor also observed that Mom has lost another two pounds. Her appetite is still generally good, but she doesn't always finish her meals. A net loss of ten pounds since this whole thing began isn't the best of news.
We're having filet mignon tonight. Here's hoping Mom eats her portion. (NB: I hear from my uncle that Mom ate her entire breakfast today; it was a biggie-- eggs, sausage, bacon, and French toast.)
Thursday, August 20, 2009
Very nice to have the relatives here. Some notes about Thursday.
1. Dr. Tonnesen offered an argument for not getting an MRI immediately, which went something like this: "If you do get the the MRI done, will you not go to NCI? If you don't get the MRI done, will you not go to NCI?" The point he was making is that, in terms of our actions on behalf of Mom, an MRI at this juncture wouldn't add anything to our plan of action. The only function such an MRI would serve would be to satisfy our curiosity about the tumor's progress. This is true, and it's also true that whatever intelligence we gathered from an immediate MRI would not be actionable; a plan is already in motion, and can't be sped up. One way or another, Mom would still have to wait for NCI to do its own baseline MRI scans on Mom.
Dr. Tonnesen also said that NCI has very advanced facilities, but that its primary purpose is research; helping Mom was a secondary purpose. Was this his way of warning us against NCI and Dr. Fine?
We asked the doctor about whether we could continue to give Mom Temodar during the three-week waiting period before her scan at NCI (September 11). Dr. Tonnesen said he didn't know NCI's protocol, but he leaned toward the view that they would probably postpone any MRI in order to allow the Temodar to flush out of Mom's system. Also, Temodar presented its own risks (lowered blood count, etc.), such that continued dosage could be potentially harmful for Mom. We would have to call NCI directly to find out what they thought about giving Mom Temodar between now and September 11.
2. Dad called NCI and quickly learned that they did not want Mom on Temodar. We are, at this point, accepting the idea of not having Mom undergo another scan. Dr. Tonnesen's opinion is that the tumor won't show significant growth during the coming three weeks, assuming the radiation has beaten it down somewhat. Personally, I don't trust this opinion, given the massive growth that occurred during the eight-week period when Mom was off radiation.
3. Dad scheduled an appointment with Dr. Royfe, who has been Mom's primary care physician for years. Dr. Royfe hasn't seen Mom since before this whole mess happened, so this will be the first time he looks Mom over. Mom will see the doc tomorrow morning at 10AM. Later in the day, she'll have her final radiotherapy session. It feels as if some sort of ineffable, symbolic line has been crossed.
4. Mom had a nice-- if humid-- walk in the park. My uncle John and my cousin Jihae held her hands as we strolled.
5. Mom was somewhat talkative throughout the day, but not much. In the evening, we all spent a lot of time watching Korean dramas with her.
6. Sean came over for a bit, staying with Mom and talking with the relatives. He had a severe sunburn on both his legs, apparently from helping someone move the previous day. I've never seen Sean so badly burned.
7. The other day, correspondent "LM" wrote the following, which is an example of the "good attitude" I referred to earlier:
Good luck. My prayers are with you and your mom. Don't ever give up even if a doctor tells you it is hopeless. Keep fighting even if it seems like you are fighting a losing battle. It's a little like the Alamo. You know you are probably going to lose the battle sooner or later, but don't ever [wave] the white flag. All of those doctor app'ts, forms to fill out, prescriptions to be filled, and radiation and chemotherapy sessions to attend are tiring (for EVERYONE). But I've only got one father and you've only got one mother. I look at this time as my opportunity to help my father in a way I've never been able to before and also as a small way of repaying him for all of the loving things he has done for me during the course of my life.
Hang in there.
That's the sort of attitude I'm talking about. You have to acknowledge that this is a losing battle, but such knowledge shouldn't prevent you from doing what you can. The Alamo, indeed.
Wednesday, August 19, 2009
At NCI on September 11: Mom gets blood work done, then moves right over to the MRI.
At NCI on September 16: We all sit down with the doctors for the consult.
As for getting an MRI done earlier... we'll be talking with Dr. Tonnesen at Fairfax about that tomorrow.
An email from a reader I'll call LM:
I just discovered your blog tonight and wanted to extend my sympathies to you, your family and your mom for what you are all going through with your mom's GBM.
I can relate as my father was diagnosed with GBM in April 2008 after surgery at Inova Fairfax Hospital following a seizure earlier that month. We live in northern Va. as well.
My father received 6 weeks of Temodar and radiation (at Fairfax Hospital) following his surgery, but shortly after that I elected to take him to the Preston Robert Tisch Brain Tumor Center at Duke Univ. because I was impressed by Henry Friedman's approach to treating this very difficult type of cancer. Dr. Henry Friedman and Dr. Fine do not see eye to eye on how best to treat GBM. Dr. Fine is much more conservative than is Dr. Friedman. Nevertheless, they are both excellent neuro-oncologists. And even though I enrolled my father as a patient at Duke more than a year ago, we still haven't seen Dr. Friedman as a patient yet. He is the architect of the brain tumor center there, but is assisted by an excellent team of doctors, PAs and nurses at Duke all committed to helping countless brain tumor patients who travel to Durham for help. They know us well at Duke.
At any rate, my point is not to to try to sell you on Duke. What I wanted to let you know is that Avastin is now FDA approved for people with recurrent GBM (which I think is how your mom would be categorized). So you don't need to get it via a clinical trial at NIH anymore. My father has received it since October at Duke off protocol and is now receiving it at the Lombardi Cancer Center at Georgetown. We've been fortunate in that it has been fairly effective at keeping my father's cancer in check even though he has suffered severe nosebleeds (a side effect which afflicts about 10% of Avastin users) and has not been able to receive the drug as often as we'd like.
Off protocol (i.e., outside of a clinical trial) it is given every 2 weeks intravenously and the normal dose for brain tumor patients is 10mg/kg. Also, they like to couple Avastin with other drugs. My father has received Irinotecan (CPT-11) and now takes a high dose of Accutane along with a low dose of Temodar each day.
Avastin has proven much more effective than Temodar for my father. As a matter of fact, he's been on Avastin for longer than surgery, radiation and Temodar combined. As you know, it is not effective for all GBM patients, but is for some. Apparently, GBM tumors with a high water content are more vulnerable to Avastin (something trained eyes can see via an MRI). I don't think my father would still be alive were it not for Avastin.
Anyway, so just keep in mind that if your mother does NOT qualify for a clinical trial at NIH with Dr. Fine, she can still get Avastin elsewhere off protocol and insurance should cover it because of the recent FDA approval for Avastin to be used on patients with recurrent GBM.
GBM is a rough diagnosis and my thoughts and prayers are with your mom, you and your entire family.
Eventually, I know that Avastin will cease keeping my father's GBM in check. His last 2 MRIs have shown small amounts of progression. When we reach that point, I will try once more to enroll him in a clinical trial for immunotherapy. Thus far, I have not had much luck getting him into any trials. For one reason or another, he has been deemed ineligible for every trial I have tried to get him into and that has been very frustrating. Just do your best and savor each day you still have with your mom. I treasure each and every day my father is still alive. And while we've been fortunate with the Avastin, he has definitely struggled during the past 16 months both physically and cognitively (not to mention the seizures).
BTW, my sisters and I all graduated from Bishop O'Connell HS. We were there in the 1980s and graduated in '85, '87 and '88 (I am in the middle).
Also, my father and I traveled to M.D. Anderson in February 2009 to be considered for a clinical trial there. We met with Dr. Conrad and, while [my father] was ultimately deemed ineligible for the trial, we were very impressed by the place and Dr. Conrad. If you develop cancer of any type and live in or near Houston, Tex., you are fortunate.
Best of luck to you and your mom. I hope Dr. Fine and NIH have a clinical trial that your mom is a good candidate for and which helps her tremendously. If you have any additional questions for me, I'll be happy to try and answer them. Keep fighting the good fight on your mother's behalf. I'm sure she appreciates all you do for her more than she could ever express.
I wrote the following reply:
Thank you for an informative email, L. Duke has come up at least twice in conversations with doctors at Fairfax. It might be a place for us to consider. At this point, Fairfax is ready to write Mom off.
We're aware of Avastin's recent FDA approval for use [with] recurrent GBM, and hope to take advantage of this, assuming that Mom will actually respond to the drug (you probably saw my link to the July 31 article about the UCLA study re: predicting which patients will respond to Avastin therapy).
Dr. Tonnesen at Fairfax doesn't think that Avastin would offer Mom more than a few extra weeks, but when I look back over the past few months, his intuitions about Mom seem to have been wrong at every turn; he's been basing his remarks more on what the charts and stats say, and less on what's actually happening to Mom. Second-line therapy of some sort is worth a shot, in my opinion. And hey, even if the treatment gives Mom only a few extra weeks, that's still valuable to us.
I'm very sorry to learn that you're going through your own GBM ordeal with your father. You have my deepest sympathy, and I wish you and your family well as you pass through this crucible.
FYI: My father received his 6 weeks of radiation at Fairfax Hospital under the direction of one of Dr. Tonnesen's colleagues (Dr. XXXX). After I told one of his nurses that we were [going] to become patients at Duke, Dr. XXXX actively tried to dissuade my father from going there almost as if he was afraid of losing him as a patient (like he was a customer in an auto dealer). In addition, my father's local neurosurgeon (Dr. YYYY) said it wasn't worth it to travel either.
When I told the surgeon I wanted to throw everything at this cancer I could (including the kitchen sink), he looked at me like I was ignorant. I don't know what either doctor would have proposed when the cancer starting growing again, but I'm glad I never had to find out. They were both wrong.
Sadly, I think many of these doctors secretly dislike the prestigious cancer centers because they lose a lot of patients to them. That is money out of their pockets. So they dissuade good people from seeking them out. Ultimately, you have to do what is best for your mom. These doctors are often wrong and when they have nothing more to offer your mom besides "standard" treatment, their arsenal of weapons against something like GBM is limited. NIH has a lot of clinical [trials], but places like Duke and M.D. Anderson have even more, I think. I chose Duke because it was within driving distance. Plus, if you don't qualify for a clinical trial at NIH, you can't be a patient there. They don't treat patients off protocol.
You should go to a place like NIH or Duke that has more weapons. I wish I had taken my father to [a] different institution for his surgery. He might have been eligible for a DCVax-Brain clinical trial had I known of it back then. Immunotherapy is the best weapon against GBM if you can find a [clinical] trial your mom is eligible for.
Just remember that you have to be your own advocate. The doctors at Fairfax Hospital have limited experience with GBM patients as compared with Dr. Fine or Duke. I lost a lot of respect for my father's original doctors when they sought to dissuade me from taking him elsewhere for better treatment. Thankfully, I listened to my gut and not to them.
Yes, we certainly know about the "be your own advocate" part. Good intentions abound in the hospital bureaucracy, but the bureaucracy itself often prevents motion when motion is needed. Its Byzantine complexity also allows too much human error to creep into the mix, something we discovered time and again as we dealt with mistake-ridden hospital reports about Mom's surgeries and other procedures, problems with nurses who didn't read charts carefully, and even doctors who didn't have their facts straight about Mom. While the overall level of care Mom has received has been very good, the mere fact that mistakes happen so frequently is cause for concern.
Thanks for your emails.
Dad spoke with the folks at NCI on Tuesday, and they said they plan to do their MRI of Mom in September. In the meantime, however, Dad spoke with someone at Fairfax Hospital who said that the radiation oncology department might be amenable to doing another MRI much sooner; we're meeting with Dr. Tonnesen on Thursday and will discuss the matter with him. I'll be pushing hard for this to happen. The main point, here, is that Mom's tumor grew as fast as it did within a matter of weeks. We can't afford to await NCI's convenience, no matter how technically correct their reasons are for waiting.
Mom herself seems to be doing as well as can be, given the circumstances. She didn't go out and exercise yesterday, but she did seem a lot better: no more headache, which I guess was just an isolated incident from the night before. She was also a lot steadier on her feet; she could probably have gone for a walk at the local park.
On a personal note, I regret that it's taken this tumor to persuade me to show Mom more physical affection than I ever used to. Hand-holding, hugging, and kisses on the cheek or forehead are now routine for me. Throughout my childhood, Mom and I had a contentious, sometimes bitter relationship, which made it difficult for both of us to express affection to each other the way "normal" moms and sons might. Our relationship reached low points both when I was an undergraduate and just before I started graduate school. For most of my early life, Mom was never easily approachable; the love she felt-- and it took years for me to realize that it was love-- was often masked by a Korean sternness and volatility that made little sense to a young, introverted American kid. Part of this had to do with Mom's childhood, which included the horrors of the Korean War as well as problems in her own family. Part of the problem was also cultural; I grew up thinking in a manner that was often very foreign to Mom. As the years have passed, however, I've come increasingly to resemble Mom in terms of personality and character. My instinctively pragmatic and empirical orientation (as well as my inability to suffer fools gladly) probably comes from her. I've noted with dawning surprise that, during much of the time that I had thought I shared my father's way of looking at the world, I was actually settling myself into a more Mom-like groove. Living in Korea for eight years served to reinforce that development.
And maybe that's why I find it easier now, after so many years, to hold Mom's hand: I've come full circle, and understand Mom better. Having lived in her homeland, I have a clearer idea of who she is. Or... maybe it's simply that whatever contentiousness Mom had retained has been stripped away by disease and surgery. Whatever the answer may be, all I know is that it's now easy, so easy, to offer Mom my hand, my hugs, and my kisses. And Mom, for her part, readily accepts these gestures in a way she never used to. This, I suppose, is one of the morbid, Monkey's Paw-type blessings to arise from our current straits. We are at peace with each other, and we both know, bone-deep, how much we care about each other.
Tonight, I hugged Mom as she was shuffling off to bed with Dad, looking intrepid in her helmet. It was our usual ritual hug-- I embraced her and said "Good night," fully expecting a "Good night" in return. But this time, I added "I love you," a sentiment to which Mom doesn't always verbally respond. Tonight, I got lucky: I heard her whisper my words back to me.
And for a brief moment, the world was right.
Tuesday, August 18, 2009
Some people think that, in life, all you need is positive thinking to get what you want, or to achieve your most cherished goal. It's a nice thought, but it's also idiotic. Consider Olympic athletes: they all visualize themselves victorious, but in the end, only one person can win each event. The losers probably spent as much effort visualizing victory as did the winner, but what good did such visualization do them? It may have helped them to strive, but it didn't help them to win. It should be obvious that merely wishing something to be true, or visualizing it to be true, is not enough.
I received a phone call late tonight that reminded me of this silly mentality. I won't embarrass the person by naming him/her, but suffice it to say that the call was offensive and insulting to me, and to anyone else who has tried hard to show Mom as much love and care as possible. The caller implied that, if our hopes flagged, if we showed "weakness," we would be inviting disaster. In other words, when Mom dies-- as she inevitably will-- it will somehow be our fault that she's dead, our fault because our mindset wasn't positive enough. I'm furious as I type this. It was an unbelievably stupid thing for the caller to say.
People who say such things are usually ignorant of the situation they're talking about. When you're ignorant, you feel free to say whatever you want, causing suffering for others (and possibly for yourself) through unmindful speech. Wise people say less in such situations; they recognize the limits of their own knowledge, and try to be helpful where possible-- not hurtful.
But the unwise seem to outnumber the wise. For example, I've heard some Christians argue that, for healing to occur (as in the case of cancer or some other illness), all one needs is the power of faith. The implication is that, if disaster happens, it must be the fault of the person or people whose faith weakened. Does this seem right to you? If you're at all rational, it shouldn't. It's little more than superstitious garbage. Mom's cancer doesn't give a damn about how hopeful or hopeless I am, how faithful or faithless. There are no magical "mind rays" beaming into Mom from my head, causing her cancer to slow or to quicken. This is the twenty-first century; we should have left such thinking behind long ago. But the world is full of primitive, superstitious, magical thinkers, so this kind of nonsense persists even today.
I once taught a Korean student at Sookmyung Women's University who had applied to study at a certain high-ranking American graduate school. She told me about her hopes for acceptance to the school.
"Wonderful!" I said. "But have you applied anywhere else?"
"Oh, no!" she said. "I applied only to that school!"
"Don't you have a Plan B?" I asked. "What if you fail to get in?"
I'm not joking when I tell you that the woman squeezed her eyes shut, shook her head violently, and passionately hissed, "I can't think about that!"
Does this woman's attitude seem rational to you? Intelligent? What could possibly be wrong with preparing for a negative outcome? Lack of preparation for failure, or an inability to face the worst, isn't a sign of intelligence or bravery in my book. Relentless positivity or optimism isn't a sane way to approach reality. You hurt more than yourself when you go through life that way. As Mick Jagger famously contended, "You can't always get what you want." That's a metaphysical certainty.
Life isn't something over which you have complete control. In fact, it's arrogant to believe that your successes and failures can be credited only to you. You're a fragile, highly dependent thing, a member of an immense web of intercausation. When you succeed, it's not only because of your own will, but also because many factors have aligned in your favor: a good family background, good education, an empty job slot at just the right time, etc. When you're victorious, you're never the sole reason for your victory. By the same token, when you fail, you're never the sole reason for your failure.
It's also important to see rightly about what causes what. Can my sadness or lack of conviction spur Mom's cancer to grow faster? That's manifest bullshit, akin to claiming that plants have a telepathic sense. My attitude and Mom's cancer aren't causally linked, at least not through some sort of empathetic hocus-pocus. There might be an indirect causal link if, say, I were so depressed that I failed to look after Mom at all, thereby allowing her to slip away. But that's not what we're talking about.
Unfortunately, in this day and age, a lot of people think in this irrational, magical manner. They argue irrationally, too. Tonight's caller said, "I know about a man who was told by the doctors that he was going to die in three months, but he outlived them!" This type of reasoning isn't reasoning. Anecdotes aren't arguments. Laying out a single case doesn't prove that a separate case will have the same outcome. I feel I'm wasting my time when I hear people trot out happy anecdotes. Do they consider how such anecdotes make me and my family feel? Probably not. When Mom passes away, what will these people say to me? To my mind, there's nothing they can say. I might be able to forgive such deliberate obtuseness eventually, but it won't be easy.
So when people try to give me advice on how to have a "good attitude" toward Mom's cancer, I generally nod my head and then ignore their "wisdom." I think such people have no damn clue what a truly "good attitude" is. Here's my take as it applies to Mom's cancer.
To me, a "good attitude" toward Mom's cancer means, first, that I'll take the time to assess the situation-- to find out as much as I can about the cancer so that I can do as much as possible to help her. Knowledge is power. Irrationality is weakness-- and a sign of cowardice. I have little respect for people who can't face death. Mom has talked with me and with Pastor Jeri about the end, and she seems accepting of it. Tonight's caller said that he/she had told Mom to "fight hard," and Mom had said that she would. Well, OK... but Mom nods "yes" to a lot these days, and she probably wanted this person to feel reassured. Truth be told, Mom probably does want to fight as best she can: who doesn't want to live? But like me, Mom knows there's a difference between believing a fantasy and fighting smart.
Which brings us to the issue of actually fighting the disease. A "good attitude" toward Mom's cancer does entail fighting. We have to recognize that, eventually, the cancer will win, but this doesn't mean we should simply give up, stand back, and watch the monster consume her. If a bear attacks a child in the woods, you can bet the father will do what he can, even though he knows this is probably the end.
And fight we have. Tonight's caller doesn't seem to have read my blog very well. He/she obviously doesn't understand how hard we've been trying to seek good help for Mom, how painfully we've deliberated over our options. That's what I meant earlier about ignorance: if this person had bothered to read my blog carefully, he/she wouldn't have said anything about "giving up." If this person really wants to understand our situation, he/she should quit his/her job, come to our house, and help us take care of Mom on a 24/7 basis. But I doubt that will happen. It's easier to make comments and complaints from afar.
In the end, a "good attitude" toward Mom's cancer means being fundamentally realistic about Mom's chances, and about our chances of helping Mom score a few extra years of life. It would be silly not to plan for her decease, to be caught unprepared when the inevitable occurs. Why add more unnecessary suffering to an already-painful situation? Death doesn't care whether you face it or not, so why not be prepared for it? There's no contradiction between preparing for death and vigorously affirming life. The best life is lived in the knowledge that we always walk hand-in-hand with death. Only fear and ignorance prevent us from openly acknowledging this. Death and life are wrapped up in each other.
All in all, I don't understand why this caller even bothered to call. If the caller had actually read my blog, every day, he/she would have known better than to think that anyone in my family is giving up the fight for Mom. The very implication is deeply insulting, given all the heartbreak we've already experienced.
The caller also needs to stop being irrational and start being realistic. No one gets a remission from GBM. No one. From the day we learned what type of cancer Mom has, we've known that Mom's destiny was already written. As I've mentioned several times, the best outcome we can hope for is that she might live long enough to die of old age, but even in that scenario, Mom won't be cancer free, and she'll still be missing a chunk of her frontal lobe.
So here's a note to all of you who want to wish Mom well.
Don't say, "Fight hard and you'll recover completely!"
Don't say, "Stay positive and you'll get better in no time!"
Don't say, "You're gonna be all right, I can tell!"
In other words, don't lie-- to her, or to yourself.
You want to know what to say? Try something like this:
"I'm always, always here for you."
"What can I do to help?"
"Here I am."
And definitely try this one:
"I love you." Come visit my mom, hold her hand, look her in the eyes, and say that again and again.
Finally, there's this: our family doesn't need ignorant scolding. If you can't be constructive, shut up.
Dad's out and about again, this time to do some last-minute shopping for meals for the upcoming few days, and also to pick up some more household and Mom-related items.
It took a while for me to take stock of our supplies, but it was a useful exercise, as I now know what I hope to serve our guests tomorrow evening, Thursday, Friday, and Saturday morning. Here's a quick overview.
Freshly made budae-jjigae for everyone but poor Dad, who can't eat spicy. Side dishes will include rice, dried seaweed, kimchi, and possibly some homemade oi-kimchi (kimchi made from cucumbers) as well. There'll be plenty of budae to go around. I don't think small when I cook.
A French-style breakfast as I remember it from my time in France, with some additions. Fresh baguette, buttered, possibly with jam or some other confiture on top, dipped into a bowl of warm, very chocolate-y chocolate milk. Plus some fruit and yogurt on the side.
Barbecue chicken and coleslaw sandwiches, kettle chips, and homemade fruit salad.
Shrimp and scallops with mashed potatoes and green beans. I admit I still haven't figured out how I'm going to prep the seafood; I was thinking of doing something bacon-wrapped, since we now have an obscene amount of bacon. We'll see.
American-style this time: eggs, bacon, sausage, potatoes, and French toast made from leftover baguette slices.
Samseon-jjajang, or three-seafood pasta in black bean sauce. Koreans call jjajang-myeon "Chinese food," but there's some debate over just how Chinese it is. Without a doubt, the black beans used in the black bean sauce are decidedly Chinese; I've had Chinese dishes in America that incorporated them. But how Chinese is the overall dish? Hard to say. Many Koreans reflexively call it Chinese, but it hardly ever appears on Chinese menus in Korea or America. One Korean woman who lived a long time in China (and who actually spoke better Chinese than Korean) told me that, in the region of China where she lived, jjajang-myeon was definitely a local dish, not considered Korean at all. China's a big place, so I grant that it's at least possible that jjajag-myeon is Chinese, but my own culinary ramblings lead me to believe it's not really that common a dish among the Chinese themselves. I could be wrong.
Anyway, alongside the noodles will be some mandu (dumplings, potstickers) with homemade sweet/spicy dipping sauce, some oi-kimchi to put atop the pasta, and some danmuji (sweet pickled Korean radish; see here).
FILET MIGNON! I'm still not sure how I'll be prepping this, but I'm thawing that monster out right now. The piece I have is about the size and shape of my arm, so there'll be more than enough for two families. For trimmings, I plan to accompany this with a vegetable medley atop a bed of couscous done up in butter and beef stock. Garlic will make an appearance somewhere.
I'm not planning desserts for any of these days, but we do have a whole rum cake waiting to be consumed, and strawberries that I can make into another lovely strawberry sauce.
How better to see off the relatives than with homemade Egg McMuffins and homemade fruit salad? One of the best inventions for making McMuffin-ready eggs is the microwave, which makes this task super-easy. Mix eggs and cheese, heat properly in the microwave, and you've got a crustless quiche that can be cut into little circles and placed atop English muffins along with slices of Canadian or American bacon. Bliss. Not for vegetarians.
Planning the meals is half the battle; prepping the food as far in advance as possible is also half the battle; and as Yogi Berra might observe, cooking the food well when the time comes is the third half of the battle. We'll see how this goes.
Dad spoke with NCI earlier today, and they want to delay the MRI on Mom until three weeks after her radiotherapy is complete. Their rationale, which makes technical sense, is that Mom's brain needs time to "settle" after the in-tandem bombardment of radiation and Temodar.
What drives me nuts, though, is the idea that Mom's tumor will have three more weeks to fester and grow. I'd rather have an MRI done now, even if the images won't provide entirely accurate picture of the state of Mom's brain. With the tumor as large and obvious as it appeared on the July 20 MRI, it shouldn't be hard to discern were an MRI to be taken, say, today.
NCI is supposed to call us back sometime later today; Dad's out with Mom and I'm busy planning meals, but if NCI calls while I'm alone, I plan to push hard for an immediate MRI.
Mom went to bed with a nasty headache. It may have been caused by the tumor's continued aggressive growth, or it may have been the result of something more pedestrian. Mom hadn't complained of pain until around 11PM last night, when she woke up after having fallen asleep in the living room while watching TV with me next to her. Dad had prodded her awake and onto her feet to get her into a proper bed; the sudden combination of waking and rising may have caused a nasty head rush as the rapid change in position played havoc with Mom's blood pressure (you've probably experienced something like this yourself if you've ever been nudged awake and coaxed upright).
Dad prepped Mom for bed; I came into the bathroom as Mom was standing there in her pajamas. Dad had given Mom a Percocet tablet a few minutes earlier; even though it was too soon for the medicine to have taken any effect, I asked Mom in Korean if she was still in pain, and whether the pain had arisen suddenly. Mom nodded, signaling that it had. I cupped Mom's face in my hands and massaged her temples with my thumbs, doing what little I could for her.
Not long after that, Dad put Mom into bed, and she rolled onto her right side, as is her wont (I do the same when I sleep). Dad's back has been hurting him lately, so he adjourned to a different bedroom to lie on a heating pad, and I crawled onto Mom's bed, lying next to her and holding her hand. Mom's breathing came and went in shallow puffs, too rapidly to be thought of as a tranquil tide. I was reminded of her times in the ICU-- heart rate normal, blood pressure OK, but breathing at about 22 breaths per minute.
Neither Mom nor I really slept that much. The rapidity and shallowness of Mom's breathing wasn't indicative of deep sleep, and for my part, I saw my time next to Mom as a sort of vigil. In truth, I hadn't intended to stay there at all, but when Dad popped in to say he would be sleeping elsewhere, I decided to remain with Mom through the night. Someone needed to be by her side.
I got out of bed around 6:45AM. Mom seemed quieter, more at rest. Perhaps sometime during the night, she had sunk below her pain and managed to fall asleep. For much of the night, Mom had been little more than a shapeless mound in the dark next to me. In the morning light, though, I saw a tiny, vulnerable woman, sleeping on her side through the slow, horrible explosion happening inside her head.
Monday, August 17, 2009
Mom's about to go to bed and is complaining of a headache. Not a good sign. If her headache is from the tumor, then we can expect more and more of this as time goes on.
Dad just gave Mom a Percocet. He says the last time she had a headache was around a month ago. It's easy to freak out and conclude that this headache is tumor-related, which would be consistent with our luck thus far, but at this point I don't really know what's causing it. I just hope Mom feels better.
Wednesday can't come fast enough; we have so many questions for the doctors. One thing we want NCI to do is give Mom another MRI. I just talked over the chronology with Dad, and it seems that Mom restarted radiotherapy around July 9. The scan was done on July 20, which means the tumor's robust growth occurred during the several weeks when Mom wasn't being treated, plus the first two weeks of the restarted radiotherapy (you'll recall that chemo restarted even later than that). That's about ten weeks for the neoplasm to have reached its current size.
We were told long ago that therapy wouldn't show significant effects until around Week 3, which calls into question whether the July 20 MRI is showing us an accurate picture of the tumor as it currently is. Has the in-tandem therapy done anything for Mom? Is the tumor even bigger now? We won't really know without seeing another MRI. Keep your fingers crossed.
We're back from both therapy and a walk in the park. I'm beginning to think that Mom might be able to tackle a half mile of walking. She also spoke with a Korean friend during the ride home from the hospital today, and sounded pretty good.
This afternoon, just before we left for the hospital, Dad spoke with Dr. Leiphart, the neurosurgeon, and asked his opinion about whether surgery was recommended if we were seriously considering Avastin therapy for Mom. His reply was a predictable "no," so we've agreed to delay surgery until after we know that the Avastin has done some good-- assuming it actually does any good.
Dr. Leiphart (in case you're wondering how to pronounce his name, it's "lype-hart," not something else) also talked with Dad about Gamma knife therapy. In the doc's opinion, the procedure is not advisable for Mom because the benefits for GBM patients aren't obvious. He noted, however, that Fairfax Hospital does do the procedure, with the hospital calling it by a different name-- "linear accelerator." (Actually, Linac/Cyberknife isn't quite the same as Gamma knife therapy, though both techniques involve high doses of focused radiation.)
We're not deterred, though; we'll be talking with Dr. Fine's team about our options on Wednesday.
An appointment with Dr. Fine's team-- if not with Dr. Fine himself-- has been fixed for this Wednesday at 9AM. We'll need to be at NCI around 8:30AM, if not earlier: processing in is a chore, as I recall from last time: you have to pass through a security inspection, and then there's the paperwork. Hopefully there'll be less paperwork this time, since Mom is now officially Dr. Fine's patient (she has been since we first met him), but the security inspection will still be a pain.
Sunday, August 16, 2009
It's going to be a very, very busy week, especially for Dad. We four guys sat around the dining room table this evening, within sight of Mom, and talked about several topics relating to her decline and to a host of post-mortem issues. It wasn't an easy discussion for any of us, but we somehow managed to muck through it. Not everything was settled, but it was still good, I think, for the four of us to get together and see where we all stood on crucial matters. A quick overview of the discussion follows.
1. Mom's trip to Texas: the purpose? the necessity? the pluses and minuses?
After Dad's recent talk with Dr. Conrad at MD Anderson, we've decided that it's best to keep Mom in northern Virginia for her treatment. Dr. Conrad recommended NCI's Dr. Fine-- whom we met a while back and who did take Mom on as a patient-- as the go-to guy for clinical trials and Avastin therapy. If Mom goes down to Texas, it will be for the sake of her sister, who apparently cannot make the trip back up to Virginia due to her age and her own raft of health problems.
Right now, Mom is probably in good enough shape to make such a trip, but timing is of the essence here. Her trip to Texas will probably have to occur before her bone flap replacement surgery: once she undergoes the surgery, she'll again be vulnerable to infection (but she'll no longer need her helmet) for about six weeks. During those six weeks, her cancer will continue to progress. Now, while Mom is still relatively lucid, ambulatory, and interactive, is the best time for her to see her sister. After the surgery, Mom's not going anywhere.
Another complicating factor, however, is that Mom might have to start second-line therapy (probably Avastin) fairly soon-- maybe within the next week or so. I need to confirm this, but from what I've found online, it seems that Avastin is administered intravenously, once a week. If this is so, then this limits the amount of time during which Mom may travel, irrespective of the bone flap surgery question. A short trip between Avastin sessions may be possible.
2. Hospice care: when to start?
Pastor Jeri had sent me an email in which she counseled that searching for a hospice care provider is better done sooner than later. While it feels unreal to do this while Mom is relatively vigorous, Dad and I have seen the MRI scans of her tumor growth and know that every moment counts.
We plan to talk further with Pastor Jeri, with Inova Home Care, and with Corinne, the social worker at the radiation oncology department, about hospice care. Always keeping in mind that hospices are businesses, we'll need all the help we can get to suss out the best care possible. It's our understanding that Medicare covers hospice expenses, which frees us up to find high-quality care for Mom.
We'll begin our inquiries this week.
3. Final things to do with Mom?
I wasn't able to keep my composure when talking about this with my father and brothers, but I felt it was a subject we at least needed to broach. We agreed that Mom has enjoyed her drives to different parks, so something like a road trip isn't out of the question. Again, much depends on how Mom is doing, what sort of second-line treatment protocol she's on, and whether we'll be driving in regions where hospitals are readily at hand. However, as my brother Sean noted, the advantage of a road trip is that it's easily canceled, if necessary. It's not so easy to cancel a trip to, say, Europe or Korea.
Ultimately, nothing specific was concluded here. We made no firm plans for any sort of trip or activity, but I expect we soon will.
4. Memorial arrangements and other post-mortem matters...?
We all agreed that, as far as the memorial goes, this can be arranged fairly straightforwardly with our church. There might be questions about who says what and which hymns will be preferred, but we've got a good church and I'm sure such issues can be resolved smoothly when the time comes.
We didn't, however, discuss some questions I'd had about what to do with many of Mom's possessions. This promises to be a difficult topic, due to the ambivalence that arises when a loved one dies: on the one hand, the presence of a loved one's possessions can be a painful reminder of one's loss; on the other hand, the absence of such possessions can engender an entirely different feeling of loss, and possibly also of guilt for having given away or sold the possessions in question. There's a fine line between keeping something for sentimental reasons and being an irrational pack rat. Personally, I'm not that sentimental about anyone's possessions, including my own: possessions aren't the person.
But others may feel differently, and for legitimate reasons, so it's an important matter to discuss. What to do, then, about things like Mom's clothing, cosmetics, jewelry, etc.? What purpose is served by keeping them? What purpose is served by not keeping them? These are issues we didn't cover this evening.
5. Second-line therapy...?
We asked ourselves whether it would be best to go with MD Anderson or NCI, and ultimately agreed to keep Mom at NCI, based in large part on assurances from Dr. Conrad in Houston that Dr. Fine is the man for these matters. Whether we're talking about Avastin or other therapies, as well as about clinical trials, NCI seems more likely to be the place for us.
Taking Mom down to Texas for a long period of time causes several problems. First, it's a burden on my aunt, who is apparently too frail to make another journey up to Virginia. If she's too frail to make such a trip, there's little use in asking her to care for Mom. Second, the city of Conroe, where my aunt lives, is 60-90 minutes away from MD Anderson by car, and we have no idea how often it might be necessary to make such a drive. Can my aunt and/or my cousin afford to do this? Finally, if Avastin therapy is available at NCI, which isn't that far from where we are, then why not have Mom treated at NCI? She can remain in northern Virginia, where her circle of care is, where her (adoptive) roots are, and people can visit her whenever it's possible for them to do so.
We also talked about looking into Gamma knife therapy, and Dad, who will be calling three doctors in the morning, has been charged with asking all three about this form of therapy. The time has come to look seriously into second-line approaches; first-line approaches have, we now know, proven to be a bust.
Dad has a lot of calling to do on Monday morning. He's also dropping off more information at NCI, and thus may have a chance to speak face-to-face with someone there about some of our questions. We hope to have Mom physically in front of Dr. Fine this week. NB: This week is also Mom's final week of in-tandem radiotherapy and chemotherapy.
6. Maqz the dog...?
We also discussed whether and when Sean might bring his dog Maqz over to see Mom. Mom loves Maqz, a precocious obsidian chihuahua with a snowy patch on his chest. Maqz loves Mom, too. None of Mom's sons is married, so Maqz is the closest thing Mom has to a grandchild. She dotes on that dog.
With Maqz comes the question of infection risk. Sean says he'll be sure to have his dog washed and groomed before bringing him over. My own feeling is that Mom should see Maqz well before or well after bone flap surgery, when her skin is more or less whole.
7. What to do about the house?
While I'm fine with talking openly about the state of my own finances, I'm not too comfortable writing about anyone else's, especially without their permission, so I'll write only in general terms here. Suffice it to say that, when Mom passes away, Dad will lose a significant source of income from Mom's retirement benefits, and this will affect the family's ability to handle the mortgage and other expenses. Dad told us that there is the real possibility that we might have to sell the house to make ends meet.
What a shame it would be to lose the house, with the renovation not even fully completed. Watching the house's transformation has been quite a heartening experience; losing the house after Mom's passing would be a cruel twist of fate, and would greatly add to our troubles: it would no longer be just a question of what to do with Mom's possessions, but of what to do with all the family's possessions.
We three sons therefore resolved that we would do what we could to help Dad keep the house, pitching in X number of dollars per month to keep things afloat. I'm currently unemployed, having quit two jobs just before my planned departure back out west, but I'll seek work when I'm able, doing what I can to defray Dad's expenses (as well as take care of my own mountain of debt), especially after Mom's passing. The point, though, is that we sons will all be there for Dad, and we'll do what we have to to keep the house. Imagine being forced to move out just after losing the woman you love best in the world. Not a happy prospect.
8. Bone flap surgery...?
We didn't talk about the above topics in the order in which they're listed; this topic was actually one of the ones discussed early on. David and Sean both proved somewhat hesitant about putting Mom through the risk of infection again, with Sean saying he wasn't strongly against such surgery and David saying he wasn't strongly for it. Only Dad and I seemed solidly for the surgery; David and Sean consented to the idea with no real objections, though Sean cautioned that we would need to be hyper-vigilant on Mom's behalf: another bout of MRSA would be a true disaster. Having made the decision to put Mom through this procedure, we all have to step up and do what we can to make sure Mom doesn't go through the same MRSA horror again.
How the surgery would be coordinated with the second-line therapy is a question that we hope the docs can answer either tomorrow or Tuesday. This is one of the topics that Dad needs to cover with the neurosurgeon (Dr. Leiphart), the infectious disease specialist (Dr. Yoho), and Dr. Fine at NCI. Dad will also ask Dr. Conrad his opinion early this week.
So there we are. That's a brief overview of a discussion that took us from dinnertime until almost 10:30PM. There's more to talk about, much more, and as the situation changes, we may have to revise some of the conclusions we've reached. But a partial action plan is in place, and as we nail down dates for therapy and surgery and a trip to Texas, we'll have a calendar to take us through... well, through the next little while, however long that might be.
UPDATE, 1:58AM: I may have answered our Avastin/bone flap question. According to this site, Avastin cannot be administered until well after surgery:
Do not initiate therapy until at least 28 days following major surgery and after surgical incision has fully healed.
Avastin has been associated with various hemorrhages and even gastric perforation-- a frightening prospect for us when we think of what Mom has already gone through. Whether Avastin is even worthwhile for Mom is a huge question, since about half of all brain cancer patients don't respond to Avastin therapy. A team at UCLA, however, has developed a way to tell which patients will respond favorably to Avastin. Read the July 31, 2009 article here.
Putting these articles together, I surmise that the best course of action may, in fact, be to bow to David's and Sean's misgivings about bone flap surgery-- at least for now. As they both pointed out, second-line therapy is the current priority, not Mom's bone flap. If Mom proves responsive to Avastin and experiences some tumor shrinkage, it might be possible, at a later date, to have Mom undergo the operation. But from what I've just read, it sounds as if bone flap surgery is off for the foreseeable future.
In a few minutes, we four guys-- Dad, my brothers David and Sean, and I-- will be discussing some rather important matters related to Mom. She'll need to be seated away from us for most of the discussion. Even though she probably wouldn't comprehend the specifics if she did sit with us, I still don't want her nearby.
Just an FYI: We'll have relatives from Texas here this coming week, starting on Wednesday the 19th. They'll be here for a few days-- three nights, if I'm not mistaken.
This coming week, we're also going to be dialoguing rather intensely with both MD Anderson and NCI; we may even be taking Mom up to NCI while the relatives are here. We'll also be finishing up Mom's radiotherapy this week-- her final five days. In other words, this week promises to be extremely busy, so PLEASE CALL WELL IN ADVANCE if you want to see Mom-- at least 24 hours in advance. We have no idea when we might be home, so please leave messages or send emails if we're not able to answer the phone.
Mom woke around 9:30AM according to Dad, but she apparently didn't get out of bed until around 11:30 today. I woke up even later-- around noon. Mom seems to be doing about as well as she was doing yesterday. She and Dad both ate a late lunch at the kitchen's new bar; Mom had the last of Mrs. Bishop's fantastic Brazilian fish stew (I want the name and recipe!); Dad had two sandwiches. Both parents ate the fruit salad I'd concocted yesterday; we have so much fruit, and we can't eat it fast enough when it's fresh, so a good portion of it has to be turned into something else, be it fruit salad or banana bread or some kind of sauce.
Sean was here for a while yesterday, and one thing he noticed was that Mom didn't "chime" after she finished her soup. We call it "chiming" when Mom finishes something in a bowl or a plate, then continues to scrape the bowl's bottom with her spoon-- another example of perseveration. Today as well, Mom finished her soup and set her spoon down without fanfare, simply waiting for the fruit salad to appear.
Right now, Mom has wandered over to the dining room, where I'm sitting and writing this entry. She's pulled a copy of Water from a Skull over to her, and is flipping through it. Before her cancer, I don't think Mom bothered trying to read the book. She may have attempted a few pages, but Mom's not really the type to read much written English, unless it's in magazine form. Generally, Mom prefers the Korean newspaper when she wants to read something. But right now, here she is, waiting for a guest to arrive and flipping through my book. How much of it does she understand? I just asked her, and she answered, "Well, I'm not really looking. Know what I mean?" I suspect that a lot of the people who bought my book are in the same boat. Heh.