Saturday, September 12, 2009

inside Mom's skull

[WARNING: The following images aren't for the easily upset. Skip this post if you don't think you can bear to see MRI snapshots of my mother's brain.]

Here is a set of MRI shots taken at various dates. An explanation follows each pair of photos. Just so you know, the scans have "compass points" surrounding the skull (especially the right-hand images) that allow you to orient yourself. For example, the letter "A" stands for the anterior aspect, i.e., the front of the skull. "P," then, refers to the posterior aspect, i.e., the back of the skull. As you probably guessed, "R" and "L" refer to "right" and "left." You'll notice that "L" appears on the right side of the image, and "R" is on the left. This is because you have to imagine that the camera is under Mom's chin, looking upward toward the top of her head. At a guess, I'd say the "S" that you see in the left-hand images refers to the superior aspect, i.e., the upper or top portion; the "I" at the bottom of the left-hand images, then, refers to the inferior aspect, i.e., the lower or bottom portion.

The first image is from April 19, 2009, and was taken at Fairfax Hospital. Mom had two scans done on April 16, the day she presented with symptoms, but the images from Mount Vernon Hospital are fuzzier and don't provide you with anything you don't see in the image below.

Image 1:


Both the left-hand and right-hand images, above, show a golf ball-shaped (not golf ball-sized) mass inside Mom's brain.

Keep in mind that MRIs, like CT scans, create images in slices, so that a doctor can move through the patient's brain slice by slice to see what's going on inside the patient's skull. The CDs containing the MRI images all hold several hundred pictures; what you see above is merely two images among many. In other words, with only these two images to look at, you're unable to appreciate the dimensions of the tumor, and you're also unable to see that the tumor formed fairly close to the surface of the brain (this is obvious when you look at other slice-images). The right-hand image, in particular, looks as if the tumor is buried deep inside the brain. It was, in fact, close enough to the surface to be easily debulked. The left-hand image, by the way, is a slice from the left hemisphere, which is where the main mass of the GBM was on April 19. Like other GBMs, this tumor sent out tentacles, and was already crossing over to the other side of the brain when Mom was admitted to Fairfax the evening of April 16.

The right-hand image very clearly shows you the extent of the edema I had written about early on. An edema is a swelling, often in response to some sort of ongoing pressure or sudden impact. The tumor had become a significant mass by April 16, so it was pushing against Mom's brain in all directions, causing the edema, which in turn caused Mom's cognitive and speech issues. I chose this particular image-slice because of the clarity with which the edema was revealed in it.

The second image is from April 22, the day after Mom's first operation at Fairfax Hospital. This operation was all about debulking the tumor, a standard procedure, and one that was performed on Ted Kennedy as well. You'll recall that debulking, especially in the case of glioblastoma multiforme (GBM), is not about eliminating the entire tumor. By the time most people discover they have this tumor, they have already formed one mass or several masses. If a given mass is located too deep inside the brain, surgery won't be able to remove it, making debulking impossible. The primary purpose of debulking is, then, a delaying action-- the better part of the tumor's mass is removed in the hopes of slowing its progress. Of course, as several doctors have noted, even a single tumor cell is enough to restart the whole horrible process: one cell becomes two, two become four, four become eight, etc. Within a few dozen iterations, you're back to having a sizable tumor again. As you'll see in subsequent images, this is essentially what has happened to Mom.

Image 2:


This image scared me when I saw it. I couldn't help thinking, Christ, all that empty space! While it was tempting to think that the neurosurgeon had heedlessly hacked away a large chunk of Mom's brain, you can see on closer inspection that Dr. Leiphart and his team had actually employed a great deal of finesse, showing enormous respect for the brain's internal contours. Dr. Fine at NCI saw this very image, and complimented Dr. Leiphart's technique. The point of the surgery had been to remove as much of the tumor as possible while also allowing Mom to retain as much cognitive, motor, and autonomic function as she could. What would be the point of performing the debulking if the patient was left a vegetable?

The technical term for "cutting out" is resection. Much of Mom's frontal lobe-- not merely on the left, but also on the right-- was resected. As you can see, much of the edema remained, but because barely 24 hours had passed since the surgery, it isn't surprising to see the edema on this MRI. Very disturbing to me, however, was the evidence of the tumor's pressure on the brain's central fissure.

The third image is from June 3, 2009, Fairfax Hospital. This was a few days before Mom's final two surgeries on June 9 and June 10. She'd had another surgery on May 25. Mom was battling a MRSA infection (methicillin-resistant Staphylococcus aureus, one nasty bastard of a bacterium, and all too common in modern hospitals) that had penetrated her scalp, her skull, and her brain.

Image 3:


At this point, Mom's infection had gotten so bad that the scans were vague as to how much of the cloudy tissue was cancer and how much was infection. Was the tumor regrowing rapidly? Was the MRSA spreading like wildfire? The operations on June 9 and 10 revealed that, for the most part, we were looking at MRSA's evil work.

Above, you see the confused mess, along with what appear to be dots or pits or bubbles. The edema was back in force at that point, which is why Mom's cognitive abilities had once again regressed. All was not well, but the docs did their best and definitively cleared out the infection. The June 10 operation, Mom's fourth (and, up to now, final) surgery, was done by Dr. Mirali, the plastic surgeon. A portion of the skin from the back of Mom's left thigh was harvested and placed on her scalp; the rest of the scalp was rotated forward to allow Mom's initial incision point a bit of slack-- it had previously been under a lot of pressure.

By the end of the fourth surgery, Mom was without her bone flap, which is where we find ourselves now. Mom wears a helmet every time she stands up for any reason: because she's missing a piece of bone almost as large as the palm of my hand, it isn't safe for her to walk without protection.

The final image is from July 20, 2009-- the image that caused Dr. Tonnesen to conjecture that Mom has only months to live.

Image 4:


As you see above, the MRI showed a new mass (circled in red in both images), almost the same size as the original mass from the first pair of pictures. In this case, however, the mass is located deeper inside the brain; surgery isn't a good option. Because the tumor has taken over the corpus callosum in crossing over from the left to the right hemisphere, it's here to stay. As Dr. Leiphart told us, no sane surgeon is going to touch the corpus callosum-- the main connector of the brain's two halves. (Above, the left-hand image is a slice from Mom's right hemisphere, unlike the left-hand picture in Image 1, which is from the left hemisphere.)

Our frustration, though, is that we had heard from Dr. Tonnesen, Mom's radiation oncologist, that the tumor had been growing "right through the radiation." However, this MRI was taken at a point when Mom had undergone only about three weeks of radiotherapy. We had been told, earlier, that it normally takes around three weeks to notice positive effects from therapy. Was it therefore possible for any doctor to conclude that the radiation wasn't working? The more I thought about this, the more it seemed that something didn't add up. It was conceivable that the massive regrowth we were seeing was the lingering robustness of a tumor that had enjoyed a reprieve of about eight weeks, during which time Mom was on a daptomycin regime to rid her of any lingering MRSA infection. Fight the tumor or fight the infection-- that was the choice back then. And it was no contest: the infection was the more immediate threat. Unfortunately, this meant the tumor had two months to grow on its own, unopposed by therapy and in defiance of the doctors' guesses.

And that, too was upsetting: we had been told by several doctors that the tumor was unlikely to grow significantly for around six months. This turned out to be tragically untrue-- yet another case of docs making pronouncements based on statistics instead of looking at the actual patient sitting in front of them.

Anyway, the MRI that Mom took yesterday morning will give us a somewhat better idea of whether the radiation and chemotherapy actually did anything, or if it's true that, as Dr. Tonnesen said, the tumor had shown "exuberant" growth despite the therapy.

All of the above images were hard for me to look at when I first saw them, and the fourth set of images, in particular, came as a nasty shock, especially since Mom had seemed to be doing better, clinically speaking (walking, talking, interacting, thinking a bit more clearly, etc.). "Months," the doc said. Months. The syllable still echoes in my head.

Here's hoping the good folks at NCI can give us more than a few months. The moral question for me, and possibly for my dad and my brothers, is how to nurture and act upon the desire to see Mom's life extended while not succumbing to a certain species of greed-- greed that will lead to disappointment, anger, and depression if it turns out that significant life extension isn't possible. Somehow, we have to hope for the best while also preparing ourselves to accept the likelihood that the best outcome won't be ours. It's a morbid balancing act. During the first few weeks of this nightmare, as we were madly researching everything we could about GBM, I remember reading the survival stats and hoping against hope that Mom might be part of that golden 4% who survive beyond the five-year mark. Nowadays, I find myself merely hoping she'll make it past Christmas.

Tonight wasn't reassuring on that score. Mom was completely unable to stand up from the couch. She tried, God knows, but instead of standing, her knees buckled and she slid off the couch and gracelessly to the floor, with Dad trying to hold her up by her hands. I helped Mom to her feet, and once she was upright, she was able to walk. I don't know what this means, aside from the obvious fact that Mom is weakening. I feed her as well as I can, but we now have to balance quantity with other concerns, like her blood glucose level, which tends to spike periodically-- a possible sign of diabetes. To be honest, I find diabetes to be a relatively minor concern at this point, but Mom's primary care physician, Dr. Royfe, has asked us to monitor Mom's blood sugar levels nightly.

I avoid giving her starchy and sugary food in the evening, and we take Mom on walks as often as we can. But Mom continues to lose weight; her skin is papery, and her muscles hang off her increasingly visible bones, as limp as clothes on a line. Enduring this is hard. I probably won't care when I find myself humbled by senescence and/or disease, but watching it happen to Mom is painful.

OFF-TOPIC ADDENDUM: Before I leave you, let me give you a link to another article that makes it clear we shouldn't be listening to pseudoscience about cancer and antioxidants: the article reminds us that the science on this subject is still being done.


Friday, September 11, 2009


Today's trip to the National Cancer Institute in Bethesda, Maryland is over. Mom had her blood work done and got her MRI done, all without any major hitches... unless you count the traffic backup that suddenly appeared when we crossed into Maryland, and the car accident that blocked the entrance at NCI, almost forcing us to drive to another entrance until one of the two drivers decided to move his car out of the way.

We've put in a request for a CD of the MRI images from today; we'll be picking them up when we go back to NCI on the 16th.

Mom was a trouper about the whole affair; getting up at 5AM couldn't have been easy for her, given her tendency to wake up around 11AM or noon (or sometimes even later than that!). It turned out that we had worried needlessly about Mom and needles: many medical professionals call Mom a "hard stick," i.e., it's difficult for them to find a viable blood vessel in her arms, but today the phlebotomist got in there just fine, causing only a minimum of wincing on Mom's part. On the down side, Mom had difficulty remembering her own birth date, something that hasn't happened before.

I'll be curious to see today's MRI shots during the consult on the 16th, and to hear what our options are, based on what the NCI docs see. We'll pick up our CD that same day, and I'll probably display some of those images here.

In fact, I'm currently prepping a series of images from some of Mom's previous MRIs, to allow you to see the progress of Mom's cancer, her subsequent surgeries for tumor debulking and infection, and the cancer's rapid resurgence. When I eventually show you frames from this latest MRI scan, we'll have a chance to see whether the in-tandem radiotherapy and chemotherapy that Mom had received did, in fact, do something useful for her.

So later today, expect some older MRI shots to appear on the blog, and sometime next week, the most current shots will be up as well, providing you a visual chronology of Mom's progress. Up to now, you've had only my word about what's been happening inside Mom's head.


pyeonji (letter)

The house has been quiet... I just hand-wrote three pages of a draft of a letter to Korean relatives-- in Korea-- who still don't know what's happened to Mom. I dropped the ball on this one; they deserve to know, but they've been out of the loop this entire time. I'd also rather not call them right now; I don't trust myself to be able to explain the situation well enough in Korean, and I don't really want to handle more stress from the stressed-out. When people get flustered, they start taking the conversation in all the wrong directions; by writing things down (in admittedly poor Korean), I'm sure to cover most of what needs to be covered. After the relatives have read my letter, they can call me. I may also end up passing them off to better speakers of Korean who have kept up with our situation.

Anyway, the letter promises to be long. These relatives don't read English (well, maybe one or two of the younger cousins do), so there's a lot to tell them. In three pages, I've gotten them as far as the first surgery on April 21. I don't want to write a novel, but I also don't want to provide them with a terse summary that comes off sounding like a cold recitation of only the most salient facts. They deserve better.


Thursday, September 10, 2009

tomorrow = big day

Tomorrow, 9/11, Dad, Mom, and I will wake up at 5AM and leave the house by 6 in order to reach the National Cancer Institute by 7AM. Hopefully, we'll beat most of the traffic. Mom is slated to get blood work done, and right after that, she'll be getting an MRI. On September 16, we'll have our first true consultation with Dr. Fine or with one of his partners. Thus begins our relationship with the caregivers who will, in all likelihood, handle Mom's second-line therapy.



My goddaughter, the eldest daughter of my buddy Mike, turns twelve today. She now begins her final year as a pre-teen. It's hard to believe she's already in middle school.

Two days from now, my buddy Steve turns the big Four-Oh. And two days after that, my brother David turns 33. The poem I wrote for him last year is here.


Wednesday, September 9, 2009

a better walk (and what happened after)

Today, Mom, Dad, and I enjoyed the beautiful afternoon weather as we strolled across the grass at Fort Hunt Park. Dad recommended having Mom walk a short distance, then rest at a picnic table, then continue on, so that's what we did, and it worked out fine for Mom. No falls to report today.

As we were strolling, Dad found a golf ball in the grass, so while Mom was seated at a picnic table under one of the park's several large wooden pavilions, she and I did some hand-eye coordination exercises. First, I formed my hands into goal posts and asked Mom to roll the ball across the rough wooden table and into the goal. She finally arrived at a method wherein she "flicked" the ball across with a powerful blow from her right index finger. Her goal-scoring average shot up once she had mastered her own technique. Next, I took advantage of the pavilion's concrete floor and asked Mom to catch the golf ball when I bounced it to her (for those who don't know: golf balls bounce well on hard surfaces like concrete). She was able to catch the ball a few times with her left hand, which was good to see.

We walked out to another picnic table and sat down... just in time to have a beautiful white-and-brown dog run up and sniff at us. "Chelsea!" yelled the dog's owner, obviously perturbed that one of his several dogs had slipped her leash. And "Chelsea!" was what we heard for the next three or four minutes as the poor owner struggled with the fact that his dog (I assume it was his dog) wasn't planning on coming straight back. The temptation of all that open space was probably too strong for Chelsea; from her canine perspective, the park was a whole new universe of scents and textures. I didn't know what breed Chelsea was, but she looked like the sort of dog that would enjoy spending all day tearing around a vast swath of pasture or forest. I pitied the owner, but was fairly certain that Chelsea would eventually calm down and return to him.

Dad and I talked about all this while Mom sat quietly with us, then we got up and headed back to the van. Mom was still too weak to get into the van without help, but Dad was able to assist her. The shadows were lengthening as we departed; the weather was cool and beautiful, so I left the windows open as we cruised slowly around the park's perimeter road and headed home.

When we got home, Mom had another surprise in store for me: she helped me prep dinner. I cooked a shrimp and bacon "crustless quiche," and Mom helped out by removing the shrimps' tails. That saved me a lot of time, and the resultant dish was quite tasty-- shrimp, bacon, egg, milk, green onion, salt, pepper, garlic, cheddar, Swiss cheese, Gruyère, and very little else. I also made a red cabbage salad and brought out some leftover penne pasta for Dad and me (Dad normally tests Mom's blood sugar two hours after dinner, so we go easy on feeding her carbs after lunch), giving Mom a small bowl of yukgae-jang instead of pasta. We sat and watched Obama's health care speech together; I cringed when a Republican congressman shouted "You lie!" at Obama during the speech-- not exactly the way to demonstrate that your side is the more civil and rational one. Mom didn't react one way or another to Obama's speech or to the congressman's breach of etiquette; if anything, the speech served as a painful reminder of what Mom can no longer grasp. She might have been impressed by the president's presence and gravitas, but the content of his speech was lost on her.

This isn't to say that I didn't take pleasure in the simple things. Before Mom went to bed, I had her practice standing up from her "throne" on the couch. We did the same movement three times; Mom needed help every single time, as was to be expected, but she approached the task with determination. Each time she got up, she received a hug from me. And later, when she got up from the couch one final time to go to bed, it was Dad who hugged her and led her away.



Our thanks to Pastor Jeri and to Mrs. Fatzinger for coming over and administering communion for us.

And now, because the weather is gorgeous, Dad and I will be taking Mom out for a walk. Mom's still too weak to stand up without help, so today's walk won't be long.

Etymological trivia: eucharist comes from two Greek words: eu (good, well) and charis (favor, grace, gift).


it lives again

I don't think I wrote about this earlier: our washing machine has been repaired, and Dad bought a one-year warranty covering both the washer and the dryer. Given the amount of punishment we've been inflicting on both machines, this is probably a wise investment.


your moment of humor

I used to write more humor, but these days, little seems funny. Occasionally, though, as I scan the blogs and Facebook pages of friends and acquaintances leading more cheerful lives, I'll stumble upon something that gives me a chuckle.

So without further ado, here's an image I found on Justin Yoshida's awesome blog. It shows what happens when you edit two movie clips to make something new: you get Captain Picard attempting to machine gun a bulletproof fat kid:


a new afternoon dawns

Mom is up, washed, and about to hit the living room to have lunch (this ritual is entirely thanks to Dad, as is the prepping-for-bed ritual). We'll be starting Mom on her exercise regimen today, doing what we can to help her regain her strength. Later today, Pastor Jeri will be by to serve communion. After that... Dad has more shopping errands to run, and I'll probably take Mom to the park for a somewhat shorter walk-- at least until she seems more hardy.


Tuesday, September 8, 2009

a small spill

Sean and I took Mom out to Fort Hunt Park today; I decided to have Mom try the same longer-than-usual walk she'd done yesterday, despite some misgivings about her weakness. The walk was quiet and smooth for the most part, but Mom did end up collapsing, her knees buckling under her when we were somewhere around the halfway point. Sean and I, who were already holding on to Mom, tugged upward as Mom fell, keeping her from smashing anything. We asked Mom if she was all right; she laughed, embarrassed at her weakness, and nodded. Sean and I kept a far firmer grip on Mom as we headed back to the car, and she didn't collapse a second time.

Sean had driven to the park separately; he had to leave for a rehearsal, so I took Mom home, examined and tended to her knee, then changed her pants: they were white, and the knees were somewhat mud-streaked from the fall. Mom's right knee turned out to be fine, but her left knee was a bit raw and scraped; thankfully, there was no bleeding. I washed the area with soap and water, dried it, applied wound cleanser and dried it again, topped it off with ointment and placed a large bandage on top before putting Mom's new pants on.

Before we parted, Sean and I talked about ways to help Mom strengthen herself. Increased protein intake is one line of attack; another is the resumption of the strengthening exercises Mom had done a while back with her therapists. Sean suggested having Mom practice standing up and sitting down while at her couch; that way, if her legs were to give out, she'd plop onto something soft. Sounds like a plan to me; we'll start that tomorrow-- whatever it takes to stave off the inevitable day when Mom will be wheelchair-dependent.

Mom's fine right now; she's sitting comfortably on her couch and watching Korean TV. Earlier in the day, she had sat at our "bar" for lunch (one side of the new cuisine island is essentially a bar), but I'd had to help her get onto her bar stool. As I mentioned before, she's been weak for the past few days. Good thing we all stay vigilant.

DIGRESSION: Before I forget, I owe Mr. and Mrs. Lindow thanks for the food and flowers they had so kindly brought over yesterday. And our apologies to Mom's friends today: we'd had to cancel because Mom had gotten up so late.


Mom and her walk

Mom received a visit from Mrs. Lindow and her husband yesterday; I was looking even grubbier than usual, so I spent most of my time downstairs, eventually taking a shower and popping back up in time to say goodbye to our guests (Dad kept them entertained in my absence).

My brother David pulled up as Mr. and Mrs. Lindow were pulling away; not long after, he and I took Mom to Fort Hunt Park for a longer-than-usual stroll. Mom was fine while walking, but she's been having balance and weakness issues for a few days. Today, she wasn't strong enough to lift her leg high enough to get into the minivan. To compensate for this, she grabbed her pant leg at the thigh and tugged upward, using the cloth as a sling to lift her leg the last few inches so that her foot could enter the van. With some assistance, she was able to pull herself into the vehicle and get seated.

Once Mom started walking between David and me, all seemed normal. Later in the afternoon, when we were back home, she did her little dance.

Today, right now at 1:15PM, Mom is still in bed, so Dad cancelled the 2PM visits from her two friends. Getting Mom out of bed and ready is a chore-- one that Dad performs gladly, but a chore all the same. Were Mom to get up right now, it would still be at least an hour before she would be ready to receive visitors.

So for the moment, the house is quiet except for the sounds of classical music from David's XM Radio equipment.



Our visits for today include a washing machine repairman and two of Mom's Korean friends, who will be arriving at 2PM. We'll be happy to see everyone: the washing machine died on us just before our trip to Texas, so it'll be a relief to have it working again; for her part, Mom will be delighted to see her buddies.


Monday, September 7, 2009

your pearl of wisdom for tonight

Silence is a grating clangor to the unwhole man.

Found over at Dr. Vallicella's blog.


David's iPhone and Mom's little dance

My brother David has had his iPhone for a little while, and seems to have quickly mastered all its various quirks. Earlier this afternoon, he took the phone out and played a video of a Baskin Robbins TV commercial-- you might know the one I'm talking about: it features deliberately bad stop-motion animation of various human and monster dolls dancing around while the following lyrics are barked:

ice cream and cake and cake!
ice cream and cake and cake!
ice cream and cake, do da' ice cream and cake!
ice cream and cake, do da' ice cream and cake!


(Video here. It turns out the lyrics are from the song "Ice Cream and Cake" by the Buckwheat Boyz, whoever they are.)

David showed the video to Mom, and as he and I bopped to the painfully corny tune, Mom smiled and started gently bopping along with us. Hee hee.

Cancer might not be contagious, but if Mom's little performance was any indication, music and dance are.


thanks again

Thanks again to my buddy Mike and his family for a nice day out yesterday, and for taking the time to take me out to dinner, then to visit with Mom. It was great to see the family again, to help my goddaughter celebrate her twelfth birthday, and to have everyone over at our house for a brief time.


Sunday, September 6, 2009

where I am right now

Sent via BlackBerry by AT&T


My best buddy Mike invited me to join his family in watching a baseball game today; the outing is also for his daughter-- my goddaughter-- whose birthday is September 10. So in a major break from my usual indoorsy, sedentary protocol, I'll actually be leaving the house (cue trumpets and tympani) and watching the Washington Nationals-- known locally by the somewhat uncomfortable-sounding nickname "The Nats"-- kill or be killed. Dad's been prepped on what to do about lunch, and I'm pretty sure I'll be home in time for dinner. If not, I can coach Dad over the phone. Ave, BlackBerry!

Mom's awake and in the bathroom meditating. I told her I was going out; she nodded and told me to have fun.


Mom's condition yesterday

Mom went for a walk in the park with Dad yesterday while I worked on our laundry. She hasn't been very talkative lately, but she has been responsive, either verbally or through gestures, when addressed. Once or twice yesterday, she even volunteered a few remarks, which is always encouraging (the frontal lobe is associated with, among other "executive" functions, one's initiative). Otherwise, Mom did what she normally does these days: she sits quietly in the living room and either watches TV or listens to classical music. Someone will often be sitting and talking with her, especially if either of my brothers comes by, and since I'm often in the kitchen, I talk to Mom from across the cuisine island. She's never alone.

So she had a good day yesterday, for someone in her condition. As always, we're thankful for the little things.