Sunday, November 1, 2009

events in a nutshell

This summary is intended for latecomers to the blog who don't have the time or patience to read the details about Mom's cancer, or about how it's affected the lives of her husband and sons. I will probably create updated versions of this summary from time to time. The summary that follows is the modified version of an email sent to a family friend. A link to this entry will be posted on the right-hand sidebar for easy accessibility.

Mom has glioblastoma multiforme (GBM), the most aggressive form of brain cancer. It's the same cancer that did Ted Kennedy in. He lasted 15 months after diagnosis. The average life expectancy for most patients Mom's age, post-diagnosis, is about 13 months. A very, very small percentage-- about 4%-- are lucky enough to live beyond 5 years after diagnosis. Life expectancy depends on a large number of variables: age, tumor location, ease of surgical removal, ability to function after surgery, etc.

Mom presented with cognitive symptoms on April 16, 2009-- very suddenly-- and it was discovered that she had a sizable tumor near the surface of her left frontal lobe, plus some growth moving across the corpus callosum. She underwent four surgeries (4/21, 5/25, 6/9, 6/10), suffered a bout of infection that nearly killed her (the second, third, and fourth surgeries were all related to the infection), and then began an in-tandem regimen of radiation and chemotherapy, as is standard for GBM, after completing an 8-week course of daptomycin, an antibiotic. By the time we were ready to look into second-line therapy, the cancer had formed two more masses in Mom's brain. The radio-oncology doc called this "exuberant growth." Both of these were deeper inside than the first tumor, which had been about 80% "debulked," as they call it, during the first surgery. Debulking almost never removes the entire tumor; GBM and other gliomas tend to be fuzzy at the edges, making it difficult to determine how much affected brain tissue to remove.

We eventually learned that the in-tandem radio- and chemotherapy had killed a significant portion of the second mass, which was good news. But the third mass appeared (we think) after the therapeutic regimen was finished. Instead of continuing the standard treatment, which would have been several months of chemo alone, we moved to stronger, second-line therapy. Mom is currently on Avastin, which became a standard second-line therapy for GBM only as of this past May. Avastin is taken through intravenous infusion; it works by stopping the growth of new blood vessels and helps to shrink the blood vessels feeding the tumors. Some patients experience a halting of tumor growth; luckier patients enjoy actual tumor shrinkage. A large percentage of patients, however-- 30-50%-- do not respond to Avastin at all. On October 30, we learned that the first two masses responded to the Avastin by shrinking, but the third mass has grown unchecked. Mom is therefore starting yet another type of chemotherapy on top of the Avastin: carboplatin. We are unclear on how effective this measure will be.

re: Mom's general condition

Mom's debulking surgery involved the removal of most of her frontal lobe, which is the seat of so-called "executive functions" in the brain-- things like initiative, logic, and so on. In the subsequent surgeries, a portion of her skull, called a "bone flap," was removed; because the bone had been badly infected, it was never put back in. A synthetic bone flap is available for Mom, but because she is currently on Avastin, which impedes healing, the risk of installing the new bone flap is too high: Mom could easily be re-infected. Because Mom's head is now extremely vulnerable to any sort of injury, she has to wear a special helmet every time she stands up and walks around.

All this means that Mom needs 24/7 care, which is what Dad and I provide for her. I almost never leave the house; Dad's usually the one who goes on errands and such. Mom can walk, albeit slowly and with little strength, and she sometimes tries to help with kitchen chores. Dad and I often take Mom out for walks, either at local parks or in shopping malls. She doesn't talk much anymore, which might be a sign of the cancer spreading backward to language centers. She makes up for her silence by "talking" through facial expressions and gestures. She often has trouble deciding what she wants, usually hearing her choices ("Do you want rice or soup?") and responding by staring at, or turning away from, the questioner.

Her weight has fluctuated due to the meds she's been taking, especially Decadron, a corticosteroid that prevents brain swelling. Decadron breaks down muscle tissue (the opposite of anabolic steroids), causing weight loss; paradoxically, it also increases the patient's appetite, promoting weight gain. I'm the resident cook, and it's my job to keep Mom as well fed as possible. At first, Mom became almost gaunt despite our best efforts at stuffing her with food. She's back to a healthy weight now, after doctors suggested that she ingest way more protein. So we bombard her with shakes, special chocolate bars, and a lot more meat, tofu, and soy bean sprouts. Whatever works.

Among Decadron's many nasty side effects is susceptibility to a fungus called thrush, which can form inside the mouth, on the tongue and throat. During Mom's October 30, 2009 visit with the doctors at the National Cancer Institute (which has taken over care from Fairfax Hospital), it was discovered that Mom has a mild case of thrush. She has been prescribed meds to combat this.

[UPDATE: A visit to the infectious disease specialist on November 9, 2009 led to the discovery that Mom may have had thrush, but what she now had was a condition called "geographic tongue," which has a variety of causes, including vitamin deficiency, hormone imbalance, excessive sugar or spicy food, etc. There is no specific cure; it often goes away on its own.]

Mom's behavior also tends to be perseverative. Perseveration refers to the tendency to continue a certain behavior without stopping. A perseverative person might, for example, find herself unable to avoid repeating a certain word or expression, no matter what someone asks her. She might also fall prey to a compulsion to start cleaning things, and once she starts, she can't stop. She might also have trouble taking pills, holding them in her hand and staring at them instead of downing them right away. Mom becomes more perseverative when she's suffering a brain swelling; this was an issue after her various surgeries, because cutting the brain causes swelling in response. Tumor growth also produces edema as the tumors press outward against normal brain tissue.

So Mom is quiet most of the time, and we've been very lucky that, at least so far, she hasn't been prone to seizures, which are normal for many GBM patients. Occasionally, Mom will say something, but it's rarely more than a sentence, and it's not always coherent. Her memory is shot, so she needs constant reminding of what she's doing and where she's been.

GBM has no cure, and scientists still have no idea what causes it. They can't correlate it to personal habits, environmental factors, or heredity. Avastin has proven effective as a stopgap measure, but the cancer eventually becomes Avastin-resistant. In the end, most patients die not long after diagnosis. The only possible "happy" ending is for the patient to live with the cancer for years, then die of old age. We were told from the outset that Mom can never be cancer-free, and that the odds of such a "happy" ending were slim.

So that's what our family's been dealing with since April 16, 2009. I've been chronicling this on the blog; if you haven't been reading it, I highly recommend it as a way to keep up with what's going on. Early on, we were flooded with "How is your mom?" questions from friends, relatives, and former coworkers; it became too difficult to summarize and re-summarize Mom's condition, which is why I began blogging about it. Since then, word has gotten around, and the questions have dropped off.

The blog isn't a sterling example of great literature, and if you try catching up from April 16 onward, it'll be quite a slog, because I usually update the blog at least twice a day. A lot of what appears on the blog is mundane, housekeeping stuff, but I also write about how the family is doing. I'm not just writing about Mom's decline for others' benefit; I'm also doing this so that our family can remember, so that we can preserve a chronology of events. The blog has actually proven useful when we've been unable to remember the exact date of this or that appointment or surgery, which is another reason why I keep writing.

Anyway, the site is open to comments; all readers should feel free to leave some (comments appear subject to approval by me; see the comments policy).

UPDATE, January 1, 2010: Happy New Year. I'm writing this update from New York City at 1:16AM.

November and December saw Mom declining as her carboplatin proved completely ineffective, and the cancer raged through her brain. She began to lose all ability to speak, and continued to become increasingly perseverative. Her muscular atrophy worsened, and we found ourselves no longer taking her on walks; it was quite enough to try to get her into the car. The house's wheelchair ramp, which had been built for us in a single day (several months ago) by church members and staffers from a local hardware store, finally began to be used for its intended purpose. Mom, meanwhile, lost the ability to feed herself, and went from nodding "yes" and shaking her head "no" to merely nodding "yes" when asked yes/no questions. To indicate "no," she would simply remain still.

The above deterioration occurred over two months' time. Some readers and friends, meanwhile, found and passed along a November New York Times article about a radical new treatment using Avastin delivered directly to the tumor via a microcatheter. Excited by the initial results (near-total tumor shrinkage in almost every case), Dad found the doctors managing the trial, and in early December we took Mom up to see them. Initially one doctor, Dr. Boockvar, was enthusiastic about enrolling Mom in his trial. But when we brought her back for treatment (arriving in New York again on December 18, about half a day ahead of a huge snowstorm), we were disappointed to discover that, after Mom's December 21 MRI, that Dr. Boockvar felt the cancer had progressed too far, and that his treatment would more likely kill her than help her.

The news that Mom had been rejected from the trial, after all our efforts to get her ready for it, was a real blow to us. The very night after we had received the bad news, Mom suffered extreme respiratory distress; a little after midnight, Dad called 911 and the paramedics took Mom next door to New York Presbyterian Hospital. She spent her first night in the ER, and was moved up to the ICU of the Greenberg Pavilion, 5th floor, Room 5-404. She's been there ever since, and is there as of this writing.

It turned out that Mom was suffering from one or several severe infections, caused in part by her inability to swallow and breathe properly. She had been inhaling pathogens into her lungs (along with chunks of food) for at least a few days and was also suffering a return of MRSA. Mom was unable to breathe on her own and was placed on a ventilator. The ICU docs gave her massive amounts of fluids, as well as a suite of meds.

Mom's condition while in the ICU might best be described as a tenuous stability: her vital signs indicate no real improvement, but they waver enough for us to think she might crash at any time. In particular, her pulse and breathing remain too rapid, while her blood pressure vacillates between normal, too high, and too low. Visually, Mom looks terrible: she's swollen from all the fluids (despite regular diuretics), and she can no longer blink properly. Her eyes have consequently become swollen and irritated. She remains completely dependent on her ventilator.

Dad has been working hard to arrange for Mom to be transported closer to our home. At present, he has found an ICU berth at Walter Reed Medical Center; it's possible we might switch Mom to Walter Reed's new hospice facility (recently recommended to us by family friends), or we might arrange for home-bound hospice care (which would be my preference).

Our family has been in New York City since December 18, and has racked up a massive parking and hotel bill during our stay at the Helmsley Medical Tower, a facility for medical professionals (upper half of the building) and guests of the various medical facilities in the immediate area (lower half of the building).

Finally, in case the above update doesn't make it clear: I should note that we are no longer looking to treat Mom's cancer. Dr. Boockvar's trial was our final hope. At this point, we only want Mom to end her days with as little pain and discomfort as possible. Advance medical directives and a DNR (Do Not Resuscitate) order are in place. My own hope is that she will quietly and happily slip away-- perhaps to a great nothingness, perhaps to a great adventure. Whatever happens, may she not suffer.

That's where things stand as of 1:33AM, January 1, 2010.

UPDATE, January 7, 2010: Mom died yesterday morning, January 6, at Walter Reed Army Medical Center, in Washington, DC. Time of death was called at 8:03AM. Her heart gave out, sparing us the terrible burden of having to extubate her and watch her struggle to breathe during her final moments.

Mom had been transferred from New York Presbyterian Medical Center down to Walter Reed via a special patient transport service on Saturday, January 2. I drove the van alone while Dad rode in the ambulance with Mom. The transfer went smoothly; Mom's vital stats didn't change much during the trip, though they did settle down a bit once she was moved into Bed 7 at the Walter Reed Building 2 Ward 40 medical ICU. We knew she was in a pretty sorry state; her immune system had shut down, and not long after, we saw she was no longer feverish-- a sign that the fight had left her.

Mom died quietly and, we hope, peacefully. Some mythologize her passing by saying "she went on her own terms." She certainly defied predictions, even to the very end. We had been planning to extubate her on Thursday the 7th, but she slipped away from us on Wednesday.

For me, there have been plenty of tears during this entire ordeal, but during the final weeks of Mom's life, my emotions became ever more raw. The moment she died, I sobbed and sobbed, as did Dad. My brothers cried as well, but Dad and I had been her 24/7 caregivers all these months, so we felt her loss with the intensity of people who had spent far too much time fighting off the specter of death.

People following the blog have left many kind comments-- condolences, well-wishes for the family, etc. Our thanks to everyone for their care, concern, and love. Love makes the world go 'round, a fact that all moms know very well. Our mom certainly did.

We love you, Mom. Very much.



Unknown said...

I've always wondered about times like this - what can you say? - I've wondered both when I've been in such a situation and when finding others in it.

There isn't much that can be said - much that comes out naturally and terribly meaningful - given the circumstances...

...I just want to say I feel for your family and I know where you are coming from --- having had the joy of living long lives together with aging grandparents - and now my father who has been gravely ill for the past 3+ years...

Not much can be said to ease the situation, but I will be thinking about and praying for your family...

(I remember back to when one of your family members had a car accident a few years ago. You set up a paypal donation link. If you do so again, I'd gladly contribute...)

Kevin Kim said...

Many thanks.

Unknown said...

Dear Kevin, Sincere condolences to you, your brothers and father on your Mom's passing. I just came here after receiving a heart-touching update from your dear Dad via email on events as you describe in your latest post. Words fail at a time like this.As I said to your Dad, your family is in our prayers as you deal with this difficult loss. Your admirable devotion to your Mom's care since the diagnosis last April remind me so very much of our oldest son, Daniel, who cared fulltime for my father when his Parkinson's severely cut back on his mobility, etc. I can understand why your Dad is so proud of his sons! Our family's prayers are with you! Tim and Sun mi Peters, Seoul