The Adequate Caregiver

Sunday, January 17, 2010 11:30 AM, CST

What they don’t tell you about remission is that the anxiety doesn’t magically melt away. In fact, stopping the adrenaline rush that is necessary to get through active treatment is like telling your body not to sweat while stranded in the Sahara. The other dirty secret of post-active treatment is that once the adrenaline does start to subside, you are ambushed by depression and a new kind of exhaustion. Or at least this is the case in our house.

Under the old exhaustion regime of active treatment, there was always something that had to be done – a home pharmacy delivery to be shoved in the refrigerator, an IV to attach or detach, an appointment to get to. Not that Scott isn’t still taking a zillion drugs a day, dealing with massively untoward side-effects of treatment and going to enough medical appointments to consider it a part-time job, the urgency has receded. In its place is a new kind of exhaustion and depression that makes it even harder for us to respond to the less urgent needs. Thus, also a lack of energy to record this phase in writing.

But, this is not to say there haven’t also been some highs. We enjoyed a potluck Thanksgiving with good friends. Scott feasted on Chinese homemade and very low fat Congee, made by our friend, Shirley Low, who made enough for us to enjoy fabulous leftovers for several days. Our friends Lesa Morrison and Rahul Kuver hosted all of us and tackled turkey duty. It was amusing to see two extraordinarily competent physicians challenged by a turkey. Shirley’s husband, Bob, also a physician, knew to stick to his strengths, and poured the wine.

Scott has learned that 3 episodes of back-to-back 30 Rock is the exact amount of time he needs to wait between one of his 8 daily meals. And we both laughed so hard that it hurt when we had the opportunity to hear Jane and Michael Stern talk about their 30+ year careers writing about road-side diners, even if Scott won’t be able to indulge, and I just wouldn’t ever even consider indulging, in their lifetime favorites: Michael – lard-crusted cherry pie from a farm stand in Beulah, Michigan, and Jane - steak with a dozen tamales served in a coffee can at Doe's Eat Place in Greenville, Mississippi.


We had visitors over winter break: my college friend, Nathana Lurvey, yet another physician, her husband, Jeff, and their children, Ian and Sidonie, who is Maya’s age. We enjoyed playing tourist in our own city during an unusually dry spell. When not playing dress-up with Sidonie, Maya managed to power through the first 3 volumes of Harry Potter and is now well into the 4th. And, Scott managed to get in a couple of good days of downhill skiing.

On the treatment front, Scott’s January scans and blood tests went well and allowed him to have his PICC line removed. While he would have liked to Skype his first fully-naked post-PICC shower, and post it on YouTube, his viewing public was denied this privilege. He and Maya celebrated by going swimming, which wasn’t possible with his PICC, or at least we couldn’t figure out, short of encasing him in a Hefty Bag sealed with duct tape, how to make it feasible.

Next on the treatment menu is dealing with the pretty serious hernia resulting from 3 major abdominal surgeries. On Thursday, January 15th, we met with a GI surgeon at Virginia Mason, Dr. Chang. In retrospect, oddly enough, this has been the high point of the last couple of weeks. Thankfully, this surgery can be done locally. Dr. Chang could fill in for Leno or Conan if necessary, while they sort things out. After she introduced herself, she suggested that the best way to understand what is wrong with Scott is to “visualize the ideal abdomen, which can then be compared to Scott’s.” She suggested thinking about Brad Pitt and proceeded to describe Brad Pitt’s abdomen (at that point I wanted to remind her not to discredit or ignore George Clooney, but refrained). Then she brought up Scott’s CT scans on her computer screen and I have absolutely no recollection of what happened after that because I was still back on the visualization exercise.

Unfortunately, she concluded that her surgical solution (inserting a wire mesh in his abdomen below his fat layer, such that it is) isn’t the right one for him because it would make it more difficult if he needed future abdominal surgeries – a distinct possibility - and referred him on to someone else (who I couldn’t possibly like as much), who uses a different technique that would be better for his issues. She warned him that this surgery will take no less than 2 but closer to 6 weeks to recover from, and will be more painful than any of his previous ones. We are both relieved to know that in the short-term, his intestines are not at risk of falling out, in the words of Dr. Chang, “unless he tries to lift a refrigerator.”

So, the big box of IV supplies and Sharps container have been banished to the basement and we are slowly figuring out what our new normal is, testing Scott’s new limits; trying to help him keep his weight over 130, 5 grams of fat at a time and no more than 40 grams per day; making up for all of the attention Maya didn’t get for the last 17 months; trying to plan a vacation around a possible 6 week recovery schedule; and motivate ourselves to deal with the more normal challenges of everyday life like laundry and home repair.