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.



Charles said...

Those images were hard for me to look at--I can't even begin to imagine how hard they were for you to see.

Still thinking of you and your family, as always.

John from Daejeon said...


Instead of writing those letters to your relatives in South Korea, you might want to try and establish a video link directly if you think you are up to talking to them directly and making it so that your mother can see, hear, and talk to them as well (Yahoo! and Windows Live Messenger have free video links as long as both sides are using that service). My father was overcome by cancer in the early nineties at a time when much of this technology wasn't available, and I forgot to inform many of my mother's relatives in Mexico about his condition at the time. While my parents were divorced by this time, nearly all of my mom's extended family in Mexico really loved my father (more so than many of his own immediate relatives) and were quite upset that they didn't even find out about his condition until it was too late to pay their respects.

I think probably all involved would appreciate it, especially if they can't make it to the U.S. in person.

Take care,


Maven said...

I am in awe of your abilities right now.