Monday, July 21, 2008

Cancer: The Preeminent Filibusterer

There are moments in life when the plates can be felt shifting beneath the surface. For us, this seems to be such. Though we had hoped for a beautiful landscape to appear, none has emerged. Not even the delicate, selfless ritual of restoring normal affairs has presented itself. After months talking around the main thing, we’ve finally come head to head with our new contours. Adding more words to this discordant palaver doesn’t take away from the fact that Craig has terminal cancer. For six months, Craig has put all he has into fighting his cancer – nothing’s been spared. He’s faced night sweats, fatigue, incessant vomiting, even bloating, yet through it all, he hasn’t taken a knee. He’s met each day with a new determination to move forward with what he has. Still, as we now know personally, cancer’s hard to beat. Counting on a strategy of finesse and endurance that would impress even the late Strom Thurmond, cancer has proven to be the preeminent filibusterer.


We met with Dr. F this afternoon, after six days of playing high-stakes poker with C’s symptoms. It seems we’ve called the cancer’s bluff symptom-wise, and Craig is finally finding relief from almost daily bouts of vomiting, pain, and fatigue. Though his symptoms seem on the up-and-up, Craig’s cancer is still growing, which was confirmed by Dr. F. earlier today. He said that the tumors aren’t growing quite at the pre-Sorafenib speed witnessed two months ago, but fast enough to suggest Sorafenib is no longer beneficial. Unfortunately, Craig has a rare form of an already rare cancer, leaving only a handful of treatment options available. C has tried two of the three agents known to have an effect on Chromophobe cancer; Sutent is the third, and most “harmful” with regards to side-effects. Whereas Torisel and Sorafenib have a mild profile, Sutent carries with it a host of potentially damaging side-effects, including diarrhea, hand-and-foot rashes, hemorrhaging, and weakened platelets. And since the drug is metabolized through the liver, it can also cause liver damage. Despite all this, Sutent has only a 20-30% chance of slowing the growth.


Dr. F. outlined the pros and cons with Craig, and seemed to suggest that it would be unlikely for Sutent to slow the growth, and in fact, it may cause more harm than good. Knowing the risks, Craig said that he’d like to try Sutent, with the idea that if his symptoms worsen, he could discontinue the treatment. He’s decided to take a ten day break to give his body a time to heal, and to consider his next treatment. If he decides to pursue Sutent, which looks likely, he’ll start a half-dose in two weeks to give his liver time to rest; his liver functions and platelets will be monitored regularly (his levels have stabilized over the past few weeks). Dr. F. mentioned again that he would view Craig’s decision to stop treatment as perfectly reasonable, and that, although he’s not yet there with Sutent, there may come a time in the near future when Dr. F. may have to advise against treatment, especially given Craig’s liver functions. Craig’s already on the bubble to begin Sutent even at a half dose, and if his liver functions drop further, he may not be medically fit to try the drug. There is also a possibility that Sutent may in fact hasten liver damage/organ failure. With or without Sutent, Craig’s prognosis isn’t good. Depending on the tumor’s growth, we may be looking at a few long weeks. Despite the known risks and unknown benefits, it’s clear that Craig wants to try Sutent, knowing that he can discontinue at any time. I don’t disagree with this approach. Though personally I hope C doesn’t spend a lot of time chasing treatments and in doctor’s offices, I also don’t want him to feel guilty for deciding to continue treatment. I said as much during our meeting with Dr. F.


At one point, Dr. F. asked if we had discussed the pros and cons of Sutent as a family. Though we did discuss his condition quite a bit last week with the palliative care team, and even decided on a DNR, we’ve been cautious of expressing our opinions too much, when, after all, it’s Craig’s decision. We, therefore, hadn’t talked at length about Craig’s situation with regards to Sutent. Dr. F.’s question opened the door to discuss the main thing, once again. As heartbreaking as it was to discuss Craig’s end of life process not one month after Mom’s passing, discuss it we did. And, for the first time in Dr. F's office, our little pod of four (and Emily) cried. We talked it over and weighed the merits of Sutent vs. taking a break. We shared our concerns as well as our hopes, but mostly, we listened. We listened to Craig express his rationale for continuing treatment and, importantly, his hopes for spending the next few weeks or months.


Dr. F. helped facilitate the discussion and helped steer the course so that Craig felt comfortable with the options that were before him. With Dr. F still in the room, I said that this may be the time to live his life free from the burdens of chemo, tests, and appointments, especially given Sutent’s likely outcome; and that he’s put every ounce of himself into fighting this disease, and has done so with a grace and courage that would make Mom proud. I told him that we’ll continue to do whatever we can to honor his wishes, and make the remaining time beautiful for him. I told him how grateful I was of all the opportunities Craig and I have had to travel, and all the memories we’ve shared together.


Once Dr. F. left to give us space, Craig mentioned that he felt overwhelmed and that it was hard to believe that his process is now coming to a head. He spoke of the people he needed to contact, and choked up when he considered how he’d share the news with his childhood friend, Steve. For a while, the five of us sat there, silently crying. After a few moments, Craig looked up, grabbed Emily’s hand, gently smiled, and asked if she wanted to go to the mountains. Broke my heart. After spending some moments coming to terms with what we’ve known since March, we stood and gathered our things, and I gave Craig -- my best friend, travel buddy, and only brother -- a long hug. And through tears, I whispered that I loved him.


It was a quiet walk to the parking lot where Emily and I had parked. After agreeing to meet up at C’s apartment, the four of us hopped into the Subaru, and Emily into her Toyota, and pulled onto Colfax, with Emily’s car just in front. At the third stop light just before the highway, Craig, the romantic, did something I’ll never forget. With assistance from the sisters, he hopped out of our car onto Colfax and walked the ten feet to Emily’s car. I’ll never forget Emily’s smile as he tapped lightly on her window, waiting to open the door. Where’s the fake rain and “here’s looking at you kid” one-liners when you need them?


Today’s been a rough day by all accounts. We’ve been smacked around, but still find ourselves standing. Seeing him shuffle to Emily’s car made me realize that there’s still happiness amidst all this sadness. Our roots are too strong to be torn from under. -- J

3 comments:

  1. Craig getting into Emily's car at the stop light reminds me of when he kissed her at the movies...I think we could all agree that Wanted was a horrible movie, but it was a chance for Craig to 'be normal' and be close to Emily. She is such a blessed addition to our family. I hope that these moments become more and more frequent in the weeks to come. We love you all.

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  2. I'm at my computer just sobbing for all of you. Words escape me. We are all connected as if no mileage separates us. I feel Mary sitting on my shoulder everyday trying to help us through. I know that you are cherishing every moment you have together and I hope that Craig and his four women will have some wonderful time together. Thank you for sharing yours days with us. Know that we are all thinking of you and love you. Aunt Joan

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  3. I think of karma as the belief that whatever energy you put out into the universe comes back to you. My belief in karma is waning. Craig, Emily and his sisters are some of the most incredible people I have ever met. You all have truly wonderful spirits and I am lucky to know all of you. Unfortunately, as I tell my 4 year old daily, life is not fair. I am praying for peace for all of you. Brelle

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