April 21, 2010
I don’t often comment on politics but I can’t let President Obama’s April 15th Memorandum on Hospital Visitation to the Secretary of Health and Human Services go by without comment. While this was a call to action, not an announcement of an actual rule change, it highlights that we still live in a two-class society – married and not married.
Many would argue that all you need to be able to make health care decisions for your unmarried partner is a set of well-drafted estate planning documents. As an attorney who drafts these documents daily for a living, I make this argument. But I am also aware on both a personal and a professional level that many times these documents aren’t honored and are just plain ignored.
A friend and former colleague of Scott’s died alone in her hospital room because the nurse on duty that night refused to even look at the power of attorney her partner held, which I drafted. Of course, we do have a set of (extremely) well-drafted estate planning documents; at least as the drafting attorney, I would like to think so. And, I have had hard copies as well as electronic copies with me every time I have admitted Scott to the hospital or taken him to an ER. But we belong to the other class – the privileged class of opposite-gender partners, and it is assumed that we are married. (Except on our honeymoon when we were asked if we were siblings, which was just plain creepy.)
The fact is, even married people don’t always name each other in their powers of attorney. Generally (and we have now had enough medical experience that I think I can adequately generalize), eventually, when Scott’s temperature was no longer in the stratosphere, his nausea was under control, or when the ailment of the moment had been managed, a staff member would say something like “you have a power of attorney for him, right?” to which I would answer, “yes,” and that often ended the conversation. And if asked for a copy I never had to worry that it would be honored. We are keenly aware that not all couples are so lucky, and that needs to change. Healthcare reform is a good step. Facilitating loved ones being able to make healthcare decisions for each other and be by the side of a dying partner is just as critical.
Off my soapbox now, and struggling for a segue from health care decisions to what I have been giggling about all week (and boring anyone who I can stop long enough to tell my story). But, I ran an errand on Pike Street and walked past Babes in Toyland. I could swear I saw a solar powered vibrator in the window. It occurred to me that it was possibly in honor of Earth Day or perhaps that missing component of your 3 Day, 3 Ways earthquake preparedness and disaster survival kit that the government is suggesting we all have. (I even went so far as to email them and ask if that was the case and to suggest that if it wasn’t, they were missing a huge marketing opportunity. What can I say, with life returning to a more normal pace I had a few extra minutes to share my thoughts.) Anyway, we have 3 days worth of wine and Band-Aids, and we are working on the rest of the list, which can be found at http://www.govlink.org/3days3ways/ (ok, wine isn’t really on the list, but it should be).
April 15, 2010
Scott’s inner Bob the Builder is back. And, no, that isn’t a euphemism for anything naughty. As luck would have it, on the evening of Scott’s first day back at work our furnace broke. Rather than do what any sane person would do with a family swaddled in multiple coats – call someone who would grunt, groan, leave our toilet seat up, charge us a lot of money and point out 3 others that we really ought to take care of before something more drastic occurs – Scott got on the Internet and ordered the part. Anyway, he was leaving in less than 48 hours for his trip to Boston, where it was balmy.
It might have been his wish to show us, and himself, that he hadn’t lost his ability to handle power tools, or possibly the fact that I have been sleeping in a short down coat under a long down coat, over sweats and Maya piled even her dolls’ blankets on her bed. But on Wednesday, he resisted the fierce urge to fall asleep on the couch after work and once again we have a blasting furnace, (now that it is finally warm enough to leave it off).
What would Martha Do? Or the end of the “Bowel Management for Frequent Stooling” chapter of our lives.
Sunday, April 11, 2010
In our new tumor-free environment I have been finding my inner-Martha Stewart, which began as a fluke but continues with a vengeance. It took less time than I had thought it would to walk to the restaurant in San Francisco where I met up with my step-sister/Dannielle/the new Mrs. Michael Weil and her husband, Mike. So I meandered down Chestnut and through Pottery Barn where I spotted a bathroom storage unit, not unlike our Ikea version, but nicer. The Ikea version couldn’t have cost more than $40 new and came with a story that I have wanted to put behind us since we bought our house. Days after closing we got a call from the former owners saying that they had mistakenly left the Ikea storage unit AND would like to come pick it up, along with a few plants that they had meant to dig out. Having already heard that they bought a new car, a big screen TV and a larger house with the windfall they got by selling to us at the height of the market, Scott said the only logical thing he could think of: “I am sorry, but my wife has already become very attached to it (and no, you may not dig out the plants).”
Ikea seems to have been founded on the principal that nobody will ever become attached to their products. That is their business plan. It’s cheap, it looks good for a few minutes when you take it out of the box, and once you use it if you manage to figure out how to put it together, the luster comes off and you are ready for a new one, or better yet, a nicer one from Pottery Barn. While admittedly useful, putting this Ikea chapter on the corner with a “free” sign was enticing. So we did.
But I didn’t stop there. What followed were 7 boxes to the Goodwill, a delivery to Dress for Success, full recycling and garbage cans. That brought us to the MD Anderson Cancer Center patient education memo attached to the refrigerator by a magnet entitled: “Bowel Management for Frequent Stooling.” At one time this was an important and frequently consulted resource. But at some point it became an unnecessary fixture in our kitchen. I am pretty sure that Martha wouldn’t put this memo on her fridge, even if, god forbid, she actually needed it. (And if she did, she would probably let us know her stools were no less than perfect.)
There are a number of explanations for Scott’s inability to gain weight or keep it on, but it seems that the most logical explanation might have nothing to do with cancer and a lot to do with the presence of this SEVEN PAGE memo. I know that I might weigh a lot more than I do, if every time I opened the refrigerator I didn’t have to look at “Change Loose Stools to Formed Stools” in large bold letters, and other similar appetite suppressing paragraph headings. So, the memo was moved to a more discreet place for now, and my quest to figure out what Martha would do, if she suddenly found herself in a newly tumor-free household, continues.
This week was Maya’s spring break. Scott spent his first full week back at work on a business trip to Boston. By all accounts it was a success. And Boston was warmer than the Arctic weather pattern Maya and I experienced on our otherwise lovely trip to Portland by way of the Maryhill Museum and the miniature Stonehenge along the Columbia River and a farm in Goldendale, where we visited a friend. Maya rode a pony, fed carrots to all sorts of 4 legged farm animals, gathered eggs from the coop that we consumed in a number of yummy baked goods, and watched Duke beat Butler. Apparently, she claims to be a long-standing Duke fan but felt bad for the guys from Butler because their uniforms weren’t as pretty. While we do sometimes see a budding chef in our midst, we don’t see an athletic scholarship in her future, unless it’s to be the team’s egg chef.
Goodbye to CaringBridge - Hello from just another mommy blogger
Originally posted on CaringBridge Thursday, April 1, 2010; 2:10 p.m.
Scott returned to work this morning after 20 months of “this and that.” As we were running around the house, frantically packing lunches, looking for matching socks, swigging coffee, wondering how we were all going to make it where we had to be on time and if I would have time to buy today’s New York Times (which I love to read in print on Thursdays because of the Style section), it didn’t seem like much had changed or that even much time had gone by.
Scott was officially released from his Man Spanx by his surgeon on Monday. She told him that he is banned for life from moving refrigerators - a limitation he seems gladly willing to live with. And, he officially retired from his Bush Library and Children’s Hospital gigs, which he truly enjoyed. Children’s sent him off with a number of lovely gifts, including a 3-color highlighter that he is particularly tickled by. He is a big consumer of highlighters, which they duly noted.
Before abandoning his Spanx for good, he thought he would give them one last run, and wear them for his first day back at work, in an evening gown, to show off his girlish figure. OK, April Fools, but the timing was too good to let pass without one last Spanx reference. In truth, he looked no worse for the wear, a whole lot better than he did 20 months ago, and was quite appropriately dressed.
In all seriousness, Caringbridge has provided us with an invaluable tool to connect with friends and family. Its purpose is to help its users “stay connected with loved ones during a serious health event.” While we will remain forever changed and Scott will remain under constant surveillance, we have found ourselves no longer experiencing a serious health event and it is our hope that we won’t find ourselves there again, at least not for a long time. So, as of today, I will continue to ramble on in writing about the ups and downs and goofiness at the Schrum/Goffe household, but as just another mommy-blogger, at http://theadequatecaregiver.blogspot.com/.
We cherish all of the support we have received and hope that everyone will continue to stay in touch through my blog, phone, email, semaphore, or your other preferred mode of communication.
With much love and gratitude,
The Adequate Caregiver.
Octreotide Scans and Durian Ice Cream, it is a toss-up as to which is worse
Prveiously posted on CaringBridge on Sunday, March 28, 2010 11:53 AM, CDT
I am remiss in not providing an update following Scott’s scans – which were clean. His wonky lymph node was measured and visually sliced and diced and compared to prior scans, every which way, leading to the conclusion that it is like a burnt out star in a lymph node galaxy, simply turning to scar tissue. It continues on the “watch” list. But Scott has already earned the privilege of moving to an every 4-month scan schedule instead of every 3. And even more importantly, only every other scan will include the dreaded second day of Octreotide injections (and its associated nuclear bowel cleanse), so he gets an 8 month reprieve from that particular unpleasantness.
All of this means that he has been given his get out of jail free card – a return to work letter from Dr. Picozzi. As in all things, Scott is easing back in by giving himself 2 whole days at the office before leaving on his first business trip to Boston (to visit the Liberty Mutual mother ship, where he will finally get to meet many of his colleagues whom he has not had the opportunity to work with since the merger took place, while he was somewhat indisposed). He has already spent too much time adjusting the settings on his new computer and two swanky 17” monitors, which in his geeky guy metrics is equivalent to a new pair of Jimmy Choos in mine.
He’s also trying to figure out how to continue to consume 3,000 calories a day, not going over 40 g. of fat, and maintain a professional image while periodically nibbling from a box of Cheerios. If only Liberty could be convinced to print their logo on boxes of Cheerios, or even Wheaties, he could be seen as an early adopter.
My trip to San Francisco was a great break from the real world. It ended in Sacramento with a lawyer triathlon of sorts: 2 – 90 minute talks, one on Wednesday night, another Thursday morning (different topics, of course), and then immediately flew home to house containing, really bursting at the seams with, an impressive accumulation of dirty dishes and laundry. Among the highs were sleep, sunshine, spending time with my friend Maggie as well as my step-sister, Dannielle and her new husband Mike (which makes her Mrs. Michael Weil, even if I am the only person who calls her that), and several great meals.
If it is possible to experience a high and low simultaneously, that would be the lunch hosted by Jeb Burton and Forrest Vickery in Sacramento at Mulvaney’s Building & Loan, near the capitol, which I understand has 2 distinct “front” entrances, so that the Democrats and the Republicans can avoid running into each other. Jeb has a 500 bottle wine cellar in his office, a fact from which one can infer how much wine was served, and consumed (over a period long enough to earn Jeb a parking ticket in a 2-hour zone). The restaurant has been referred to by one food blogger as “porktastic.” I can’t vouch for that, but they only serve locally sourced, seasonal, shade grown, free-range meat and produce. I was assured that the veal was raised on mattresses with electric blankets at night and the foie gras was fed by candle light while enjoying classical music. Ok, not really, but the foie gras was already on the table and would have gone to waste, so I admit that the one bite I indulged in, on French toast, with strawberries and some sort of exotic reduction was the most incredibly, sinfully ethereal way to get one’s daily dose of iron.
So, the low: My companions couldn’t be tempted by the Valrhona Ding Dong, and instead decided to take a walk on the wild side with Durian ice cream. Really, this may remain the low point of dining for life. The one exception, if I ever run across it, could be Casa Marzu, the French cheese eaten while still crawling with live maggots (and becomes toxic once the maggots have died). I confess, I didn’t even taste the ice cream. But the smell resembled rotting garbage, garlic, and vomit, doused in a good squirt of lighter fluid. Just the smell remained in my nostrils for an unpleasant amount of time. Forrest was the only one to taste it, and assures me that the smell is nowhere near as vile as the taste. From the way he lurched from his seat, grabbed at his throat, threw down his spoon and begged the server to remove the bowl from the room, I believe him.
While Scott is in Boston wearing his grown up suits, carrying a briefcase (filled with, among other things, his 13 daily medications and 4 optional ones for various types of intestinal emergencies), and doing whatever it is lawyers do, which he has been waiting so long to get back to, Maya and I will be spending her spring break riding ponies near the Columbia Gorge followed by a few days in Portland, visiting museums, and enjoying the more conventional yet still organic, local and humane Portland food scene.
