Wednesday, August 12, 2009

"months"

Two of Mom's friends, Dale and Pat, visited earlier today (thanks for the food, ladies!). Dad didn't have the heart to tell them the news we got today from Dr. Tonnesen, who very suddenly summoned us to his office (we had thought he wouldn't be able to meet us this week, but I guess he found the time).

The news is basically this: the doctor has now had a chance to review the latest MRI, and the tumor appears to have been showing "exuberant" growth despite the radiation and chemo. It's "been growing right through the radiation," according to him. He acknowledged that he ought to have looked at the images earlier-- that the words of the report didn't convey the same import as the images, which clearly showed the severity of the problem. But as we discussed the chronology of the tumor's growth, it became evident that Mom's fate was probably sealed as much as a year or two prior to April 16.

As I'd already noted in previous posts, the tumor has indeed spread across the corpus callosum and into the right hemisphere. We all knew this much-- have known it for weeks, in fact-- but didn't have a clear idea as to the true extent of the neoplasm (new cancerous tissue). We now know: the size of the new growth is currently comparable to the growth that Dr. Leiphart removed in the original debulking. With each tumor cell doubling periodically, and with the tumor as robust as it is, we can expect the cancer to win its battle with Mom within a short period of time. How long? "Months," according to Dr. Tonnesen-- possibly less than six months. We'll be lucky to have Mom around at Christmas.

A lot of today's discussion focused on what else could have been done, and whether second-line therapies like Avastin would be of much help. Dr. Tonnesen leaned toward the view that second-line therapies wouldn't do much to extend Mom's life-- a few weeks or a couple of months at most-- and that that extended period would still be marked by a deteriorating Mom with little capacity to appreciate what was being done for her. What would be the point of extending her life a few weeks or months if her quality of life promised to be miserable?

Dr. Tonnesen also noted that, even if Mom's tumor had been caught a few weeks earlier, the same situation would have arisen, though it's possible that the tumor's growth could have been delayed a few weeks. The tumor itself is following a relentless mathematical progression, increasing in size by powers of 2 as its cells divide and divide. This cancerous process started long, long before Mom's symptoms appeared on April 16; a brain scan taken a year or two ago might have caught a tiny white spot inside the brain, but even such an early sighting wouldn't have altered the ensuing course of events. GBM is deadly-- period. Once you've got it, you've got it.

We also discussed whether it was worth the effort to restore Mom's bone flap. As you might imagine, Dad and I reached no conclusions on this topic while in Dr. Tonnesen's office; we were still absorbing the import of Mom's latest prognosis.

There's a lot to think and talk about. Should the bone flap be put back in, only for Mom to have to undergo another arduous antibiotic regimen near the end of her life? Should we bother taking Mom down to MD Anderson when we already have a good idea that they won't be able to do much for Mom? Should we look into hospice care? As always, the cancer leaves us little time to make important decisions.

I don't know how many of my readers have held the hope that, somehow, Mom will miraculously snap out of this and spontaneously get well. While I acknowledge how natural it is to think so wishfully, such thoughts are pure fantasy. For me, the main impact of today's session was that we finally had a specific time frame to use as a guide for Mom's decline. The prognosis answers certain existential questions, such as "Was this past May 4th Mom's final birthday party?" or "Is this Mom's final summer?" But those questions are minor compared to the fundamental yes/no question: "Is she going to die?" We received the answer to that question early on, when the early biopsy results confirmed that the mass inside Mom's head was indeed a GBM. All that was left was to settle whether Mom's death would be sooner or later. The answer is sooner.

Just a reminder: the median life expectancy for GBM patients is about 13 months, post-diagnosis. That's a statistical average-- an indication of how things might go, not a guarantee. Many GBM patients will last beyond that average, but many will also fall below it. Mom was dealt a bad hand: she's got a super-aggressive tumor, and it's intent on taking her down fast. While I hesitate to say that there's a bright side to any of this, we can take some comfort in the fact that this will happen quickly, and that Mom's blunted affect and awareness will make the experience less frightening for her than it might otherwise be.

Dr. Tonnesen had put Mom in an exam room off to the side so that he could break the bad news in his office, to Dad and me alone. You'll never know what it felt like to receive this prognosis, then to walk back out to the waiting room to see Mom standing there, alert, smiling her happy smile and poignantly unaware of what we had been discussing. Mom seems to be doing so well right now. It's hard to believe that, this Christmas, there might be only four of us around the Christmas tree. Just us guys.


_

12 comments:

Anonymous said...

uh-oh.

nothing can be said ...am sending huggs with this.
...from both myself & youngbae

lara

Jelly said...

Oh, Kevin. I'm so sorry to hear this.

Curtis S. said...

Life is a test with more questions than answers, so I'm told.

As one of many who read your entries daily I am at a loss for words to offer for comfort.

So all I can offer is my sanguine "Hang in there bro'"

You are in the right place at the right time.

Kelly Youngberg said...

Am so sorry to hear this. My thoughts are with you and your family.

Horace Jeffery Hodges said...

I'm very sorry to hear this, Kevin.

I kept hoping for a miracle, but from everything that you've told us, the miracle would have to be a very big one.

Jeffery Hodges

* * *

JR said...

Kevin,

I am also so sorry to hear about this. My thoughts and prayers go out to you and your entire family.

Terry Douglas said...

The final paragraph was heartbreaking.

As has been alluded to, words sometimes cannot express the proper meaning for certain situations, usually emotional in nature. I guess this is one of those times. One thing I can say though, is that you, my friend, have been a rock for your mother. Your strength has been inspiring.

Take care and Hang in there.

Charles said...

As always, my thoughts and prayers are with you and your family.

kwandongbrian said...

All the best to your family, Kevin. That's seems inadequate to say, but what wouldn't be?

Nomad said...

Kevin,

I'm sorry to hear this latest news. My thoughts are with you and your family, my friend.

Maven said...

Your mother is truly a blessed woman to have so many folks caring for her.

Be in the moment, don't dwell too much in what will come, otherwise how can you function? You need to keep on, "keepin' on," for yourself, your sanity and your family.

Much love and empathy to you and your family.

John McCrarey said...

Jeez. Well, you are on the scene up close and personal so this news while not a surprise for you, I'm sure it is no less devastating.

It's not going to get easier the next few months, but I think staying strong through your mother's ordeal is the best possible gift you can provide.

I'm sorry there are no words that can provide comfort in times like this, but please know that people care.

John