The Adequate Caregiver

Scott returned home late yesterday afternoon, like most men in Seattle, licking his football wounds. I can honestly say that I have no idea what this 12th man business is about, but from the bits and pieces of discussions I picked up yesterday, I gather he didn’t work out so well.


Once Scott’s pain was managed, he was free to take his massive bottle of Ibuprofen home with him, and even to go to work today. As someone who has earned plenty of frequent flyer miles at Virginia Mason I think that they were as pleased to see him go as he was to leave. I was pleased to see that he was perfectly capable of asserting his patient rights on his own. When told that only certain people could draw blood through a line and that the phlebotomist would have to draw it with a needle stick, he announced that he had plenty of time, nowhere else to go and could wait all day if necessary. The phlebotomist left and shot out a parting “good-bye” in a way that could only really mean “I hate you and I know it is only 8 a.m. but I really hope that you end up being my worst patient today.”


Today, Scott is really feeling quite chipper and glad to be back to a day that doesn’t involve Purell, a gown flashing his backside, or a bed with rails. We joked last night about what he might say to the question “hey, how was your weekend?” Really, is there an elevator answer to that one? Maybe “I really had hoped to get around to some yard work but the weather just didn’t let up long enough to get anything done.” Or maybe just “my wife is militant about not having a television, so I had to go somewhere else to watch the game.”


We are shocked and saddened by Steve Jobs’ announcement that he is taking a leave of absence for health reasons. He and Scott share the very rare diagnosis of neuroendocrine cancer. He has been our personal barometer of the future, a source of inspiration and knowledge (including the positive outcome of liver transplants, should that need arise - did you know that you are more likely to get an organ sooner in a state that lacks a motorcycle helmet law?). Scott frequently checks on recent photos to see if Steve is looking healthy. We are counting on him to win this battle and put up a good fight.


Thanks to everyone for your support and kind words over the weekend. There is no elevator answer to “how was your weekend?” So, we will just say that we are truly glad it is over.

Until 2 this morning, this is what I had been planning on posting for a while:

We were glad that New Year’s Day came when it did. It was a huge relief to put a lot of crap behind us, literally and figuratively.

Figuratively: between Christmas and New Year’s Day Scott lost about a unit of blood – through his nose. At one point they discussed inserting a balloon in his nose that would be inflated. But, after 4 days, when we were ready to contact BP to find out exactly what was in that Junk Shot cocktail they used in the Gulf, because we had exhausted all other options, it stopped.

High points – lots of narcotics for pain. Low points – the pain and me flipping him off when I refused to take his pants to the dry cleaner to get the blood out and stop at home for a clean pair on the way back.
All this while he is still dealing with continued side-effects from chemo – infected ingrown toenails. Lots of them. His fingernails grew back finally and without a lot of drama. The toenails have been a different story. Spending 4 days at home, soaking his feet in Epsom Salts with the medical sweat sock equivalent up his nose, and a Maxi-Pad taped across his face (which didn’t really help), seemed to compromise his dignity -- slightly.

Literally: He recovered just in time for our sewer to back up. So, thankfully he got to be man of the house when we had the plumber out on a Sunday night of a holiday weekend to do a colonoscopy on our sewer line, a financial investment equivalent to a first class ticket to Rome, which brings us to the latest development.
Here’s today’s update:

In fact, he was supposed to be going to Rome tomorrow. That was changed to Boston, which he was in full metro-sexual man angst about what to wear when it was postponed. In retrospect, a darn good thing. Since he was grounded, he was apparently is willing to go to great lengths to have unfettered access to a TV to watch football. He started to experience chest pain around 8 last night, which became extreme around 2 this morning. Maya sleepwalked across the alley and into bed at our neighbors, Bill and Heidi, for whom we are eternally grateful, and Scott and I drove the all too familiar path to the ER.

They quickly worked to rule out metastases in his chest area and have pretty much concluded he has periocarditis -- inflammation or an infection of the membrane around his heart. Easily treatable but not as simple to figure out the cause. A more complicated project has been to get his pain under control. He finally got his old standby, Dilaudid. His pain is mostly under control, he is sedated and engrossed in two games at once, the one on his TV and the one on his neighbor’s.

The good news is that, unlike MD Anderson, they trust me to sit on chairs with wheels!! In the ER while Scott was getting all his lines inserted and I thought I would pass out, I was looking for a place to sit. I couldn’t remember which hospital it was that I got in trouble at for sitting on rolling chairs, which were for hospital personnel only. So, I asked if there was a chair available. In light of the fact that it was 3 a.m., and I was surrounded by empty chairs (but all of which had wheels), the nurse decided to assess whether or not I was delirious. When I realized that the answer to “is there a chair I can sit in?” is not “do you know where you are and what city you are in?” I explained that it must have been MD Anderson where they didn’t trust me enough to sit in a wheeled chair. So, I gave them a new story to tell each other until a burn victim was brought in by helicopter and a homeless person got past security and into the ER. Believe it or not, Fridays are definitely slower in the ER than Saturdays.

In the meantime, Scott has an appointment for a Gallium-68 scan at University of City of London Hospital in April to better assess his current risk, and treatment options. He is still considering starting on a drug called Sandostatin, and weighing the risks of taking it (digestive side effects and increased risk of diabetes), versus the risks of waiting.

More good news: We have met our insurance deductible for 2011. And even better news, we have a whole village to depend on so that we can spend the night in the hospital, know that Miss Maya is in good hands, and I get us through this latest bump in the road.