The Adequate Caregiver

[Insert Family Photo Here]

2011-04-03T09:40:00.000-07:00

Hello from Paris. I took a lovely family photo in front of the entrance sign to the Department of Nuclear Medicine at University College Hospital before Scott's appointment on Friday, and then promptly lost my camera. Apparently, I was a little distracted that day, and not just because we managed to walk to the hospital through Regents Park as the Queen's Guards rode by on horseback. So:

VISUALIZE INSERTED PHOTO OF STRESSED OUT FAMILY HERE

The results from Scott's scans are all good. No signs of tumors were found and better yet, his radiologist in London insists we return in a year. He discussed the pros and cons of beginning a course of chemo that is thought to prolong the period of remission, and concluded that annual scanning would be sufficient for now. Scott was slightly radioactive as a result of the radioactive dye he was injected with, so we flew to Paris armed with a letter of explanation in the event he set off the security scanner at Heathrow. He wasn't allowed to sit next to Maya or give her too many hugs. Other than that, he is no worse for the wear.

While Scott was working his way through the insanely overburdened, but more advanced and surprisingly efficient medical system, Maya and I spent the afternoon in the nearby but universe away, very chic Notting Hill neighborhood, had an elegant lunch and met up with Scott in the afternoon in time for our first French dinner with our friends, Shirin and David. Shirin has known me since I was a year old and David since I was just a little older than Maya, so it was wonderful that they could see Maya for the second time.

There were several fancy people in the restaurant I thought we should recognize just because they seemed like they were only taking a night off from appearing in the society pages of Tattler. But, David finally identified one frumpy man sitting behind us, Margaret Thatcher's son (more infamous than famous), but wasn't able to identify the very elegant woman in the 4 inch Louboutin heals in the couture gown that had to be somebody, because a nobody wouldn't endure the excruciating pain and expense of that outfit without knowing she would be getting some serious attention or a wedding proposal (not likely since the other 4 people she was accompanied by seemed to be older couples).

Our apartment is in an 18th century building just across the street from the Cluny Museum, in a neighborhood much more lively by night than by day. Today, because most museums were closed, we joined the unwashed masses trolling the streets of the Marais. Maya got a ride on a double-decker merry-go-round and Scott and I began our mission of beginning a heart-healthy diet in earnest with our first of what we hope to be many glasses of wine at lunch.

If "The Doll's House" Took Place In London and Was Furnished By Ikea

2011-04-01T00:01:00.000-07:00

Today is our first full day in London, having arrived sometime in the middle of the afternoon yesterday. We made the most of our half day by visiting the Starbucks in our "apartment" building (more on that below), where we fueled up for a trip to the Victoria and Albert Museum followed by dinner at Yalla Yalla, a terrific Lebanese restaurant, with Scott's former colleague Michelle McEttrick and her husband Mike Eggers. Michelle and Mike, who live in Notting Hill and together have 10 nieces and nephews, instantly amused Maya, giving us a chance to drink a glass of Lebanese wine (lovely), and catch our breath (lovelier). We enjoyed hearing about their lives in Notting Hill. In fact, one of our guilty pleasures since it came out has been re-watching (and re-watching) the eponymous movie with Julia Roberts and Hugh Grant. (And our secret embarrassment, after having let Maya watch it with us when she was in pre-school, having her share with her class that her parents let her watch "an adult movie,"; i.e., a grown-up movie, and receiving a scolding call from her teacher, who was quite skeptical about our explanation that anything not Dora the Explorer qualified as an "adult" movie in our home.)

Anyway, we are staying in a lovely old building, on the outside, remodeled on the inside into studio apartments, which look exactly like Maya's doll house purchased at Ikea. And, the interior seems to be furnished, like the dollhouse, from Ikea, or some moral equivalent. If Scott and I were only recent immigrants from some third world country, we would be so much less embarrassed about stay so far. Whatever medical humiliations he may experience in London later today, it won't be as bad as what we subjected ourselves to before midnight and then repeatedly thereafter. First, the electricity to the room is activated by putting the room key into a slot - easy enough except it is impossible to find the slot in the dark, but we did, so we didn't have to call the front desk for help -- yet.

The foldout bed comes with laminated instructions in German that made sleeping on the floor very tempting. The coffee pot plugs in, but after searching high and low for an outlet Scott gave in and called the front desk, the first time. A very nice Bulgarian immigrant told him that it was behind the microwave, or at least that is what Scott thought he heard. While Scott was in the process of actually removing the microwave I noticed two quite accessible outlets BELOW the shelf the microwave was resting on. The microwave has been returned to its upright and locked position. But then we decided it was too warm - really, who would expect it to be too warm in London in April. Next we attempted to open the dollhouse window installed over the original window, every which way, including a precarious attempt while standing on the Ikea doll house chair that could have easily collapsed under a heavier person, but we figured that since Scott had a hospital appointment anyway we would take the risk. This precipitated another call to the front desk where a recent Mongolian immigrant told us to push the button, which made me laugh so hard that the fruits of our microwave removal escapade, Nescafe, launched out my nose.

After a fervent attempt to find a button, any button, Scott abandoned his Bob-the-Builder dignity entirely and called the front desk. This time a recent African immigrant came to our rescue, puzzled by how we could need an open window when in his estimation we should have had the heat on, and indeed, pushed the button, releasing what seem to be quadruple hung windows. God help us if it does get cold, because we will never figure out how to close them and will just need to crank up the Ikea space heaters that don't come with laminated instructions and don't seem to have any intuitive explanation for how they function.

Scott is looking forward to his appointment at the hospital later today with excitement and a small dose of trepidation. He is excited because London has bicycle stands on seemingly every street corner, and he plans on using one to get to his appointment. I have been remiss in my updates, but for the last couple of weeks there has been concerned that he had spots on his kidneys or alternatively kidney damage from chemo. To make matters scarier, his doctors wanted to wait for his scans in London before making any firm conclusions. The morning before leaving Seattle Scott went through a battery of tests and visited his oncologist who thinks that, in spite of the prior wonky lab results, his kidneys are OK. So, we are still a little nervous about what they might find, but less so than before. For now, our anxiety is focussed on how to operate the doll house shower which seems to be mounted precariously so that the slightest movement causes it to dislodge, launch and cause bodily injury, and at what point we call someone to show us where the "on" button is located--dressed, or undressed.

Thank God Maya is still asleep and hasn't been forced to witness the total ineptitude of her parents, which could cause any sane and logical person to wonder just what the hell we are going to do in France.

As a side note, I am now a fervid Mac convert, my Vaio laptop having crashed and died while on a business trip in San Francisco last week, and pronounced DOA after 90 minutes of diagnostics by a nice man in India. The good news was that I was 4 blocks from an Apple store and got there just as it was opening. The bad news was that it was the day that store got its first shipment of IPad 2's and a zillion previous converts had already been in line for hours. Somehow I managed to convince the man handing out numbers to let me in ahead of the masses so that I could undergo my conversion. Before even opening the box I received an email that I was on one of the 156 Alaska Airlines flights that were cancelled because they managed to blow up their entire computer system in the process of an "upgrade" - they really need a Mac. So, I found myself with ample time to actually read the manual, before being rerouted, a day later, on 3 different airlines, from San Francisco, south to LA, and then north again to Seattle with a stop and plane change in Santa Rosa, all told, taking longer than our flight to London. It's amazing what you can learn when you read the manual - and even more amazing that I found it easier to get a new Mac up and running than it was to open a foldout bed.

DESPERATELY SEEKING SLEEP IN SEATTLE

2011-03-05T09:32:00.000-08:00

Twenty-five days and counting until we embark on our first international adventure medical vacation. The Adequate Caregiver is madly preparing to go global. We have decided that our lives aren’t real. We are living on the sound stage of a sitcom broadcast on a station in the 400’s, somewhere between the do-it-yourself surgery channel and the hunting channel. We don’t qualify for network TV – too unbelievable. Thursday was a normal-ish day until I gave a 90 minute talk at a very large local software company that shall remain nameless, with a friend and colleague who is much nicer and more patient than me. The audience demonstrated to me why said really big unnamed software company is able to keep creating new products and not stop at the first sign of defeat. Really big relentlessly applied brainpower might be able to solve electronic problems by tweaking code. Unfortunately, the same doesn’t always apply to the tax code, which we have to live with or lobby Congress to change it. This distinction seemed to befuddle the audience. Thank God for David, my savior, who finally cut off a line of questioning essentially about “how could the IRS find out I was cheating” with something along the lines of: "you can file your tax return any way you want but check on the visitation schedules in the various federal penal institutions in our area before you do." I could have hugged him. I still hopefully await my thank-you tweet. Oops, wrong company.

During my 90 minute, 5 mile per hour drive home in pelting rain and horrific traffic my password on the firm’s network was inactivated for various internal reasons that were necessary but unfortunately timed. Worse, it needed to be reset from the office, not from my laptop in the living room in the company of Ms. Kitty. For a split second I even considered (in admittedly, completely irrational desperation) calling the person who had been terminated, necessitating the password change, to see if he could help me re-set it from home. I didn’t. Instead, this is where the script just goes off the rails on the believability scale.

My lovely husband took pity on me and ordered groceries from Amazon Fresh so that I wouldn’t have to serve Cheerios to the 15 - 3rd grade moms (and one very pleasant dad) I had invited for coffee at 8:30 a.m. on Friday morning. He probably also did it out of pity for himself, because nobody can remember the last time I had time to go to a grocery store. Then he left for his book club. Yes, a men’s book club. The fact that he not only belongs to a book club, but that they read the book and discuss it, mostly free of gossip divergences, may be the most implausible part of this post. They do, however, drink good wine and scotch.

Instead of working from home on Friday as I had planned to do for many weeks, I got to the office around 5 a.m. to change my password and delete as many of the 84 emails I had received since 3 p.m. on Thursday when I left. I stopped by Top Pot just as they opened to pick up still warm donuts on my way back home, as Scott was unloading the 5 bins of groceries delivered to our porch by the grocery gods. Living in a zip code that Amazon delivers to is definitely one of the top 10 reasons I love my house.

Just as the last mom was leaving – by the way, it was a very lovely get together and I feel so fortunate that Maya is in a class with such wonderful, funny, intelligent, generous and accomplished parents - Scott called to say that he didn’t want to worry me but his periocarditis was flaring up. What more can one say but “that’s nice, I will talk to you later.” The Adequate Caregiver opted for the less than adequate approach to caregiving, spent a delicious hour with the cat on her lap, returned to the office to deal with a bunch of stuff that is too hard to do on tiny laptop, left at 4 to pick up Maya and her friend who spent the night and now I am drinking coffee peacefully with a man-somewhat-in-pain curled up with his happy kitty. We are hoping that if there is a god, then little girls who giggle until midnight will sleep until noon. The Adequate Caregiver’s faith is challenged, but the fact that Amazon Fresh exists and Ms. Kitty is purring provides hope that there is some order in the universe.

VERY BELATED HAPPY VALENTINES DAY (from Feb. 13, 2011)

2011-03-05T09:27:00.000-08:00

Today is Sunday, the day before Valentines Day, and our day to divide and conquer household tasks. Valentines Day reminds me that early on, Scott and I attempted an egalitarian marriage and had to quickly admit that it wasn't working. He is a disaster in the kitchen and I have made a point of never acquiring an iron or ironing board. Over 20 years things have gradually pretty much shaken out along traditional gender lines. First, we discovered that just about any household task falls into one of two categories: kitchen or excrement. I am assigned “kitchen” and he is assigned “excrement.” If neither of us is willing to claim the task, the one who would otherwise be assigned that task (according to traditional gender assignment – which always falls to Scott by default) is responsible for hiring it out.

When we really can't agree on the category we call my dad. We once had a very long (as in a couple of days in the middle of a warm patch of summer) discussion as to who would dispose of the dead bird on our porch, until my dad brought 2 Hefty bags and as a one-time-only favor, disposed of it for us.

Dad also gave Scott his Lovanox shots for a while until he announced that anything involving seeing my husband's ass was my responsibility and precipitously but not surprisingly, quit.

The one deviation is laundry. He doesn't like the way I do it and is very particular about how it is done. I subscribe to the stuff it all in until the machine at once method. So, he does laundry and I am not allowed to touch it, which works well for me. It has become a litmus test for us as to how sick he is. If I announce that I am going to do laundry and he doesn't panic, I know he is not well.

Right now we are all well. In preparation for his possible trip to Berlin, Scott test drove a mini, decided he had gotten German cars out of his system (and with that we have plans in place to go be in London on April 1st for a Gallium-68 scan at the Institute of Nuclear Medicine at University College Hospital), Maya is at a swim lesson, I am in my office, and we all wish all of our family and friends a Happy Valentines Day.

Just Another Monday Morning

2011-01-17T08:00:00.000-08:00

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.

JUST HOW FAR WILL A MAN GO TO CONTROL THE REMOTE?

2011-01-15T13:08:00.000-08:00

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.

Celebrating National Pie For Breakfast Day

2010-11-24T22:11:00.000-08:00

Apparently, the day after Thanksgiving is National Pie for Breakfast Day. We propose a virtual joint celebration in honor of Scott’s spectacular scans and his one wonky lymph node looking no wonkier than it did previously. On top of that good news, because he has passed his one year mark in remission he will be scanned every 6 months instead of every 2. He still will go in for frequent blood draws, but that is something he can do on his lunch hour without even putting down his beloved IPad.

Now that the stress and the totally insane logistics, even if there hadn’t been any snow, of his scans are behind us, we are letting our hair down at the Goffe/Schrum/Miss Kitty residence. We might just go crazy and have pie for lunch too.

Dr. Picozzi doesn’t want him to be injected with too many different radioactive dyes too frequently so they will discuss the trip to London before his next scans. Since we already have tickets to Paris for Maya’s spring break – a real vacation – we might be able to add a jaunt through London, although it is clear that the company of his family is less desired than the ability to test-drive cars on the autobahn. Admittedly, the urgency of the trip to London comes less from Scott’s health concerns and more from the fact that the last car maintenance (or home maintenance record, for tat matter) that either of us could find was from mid-2008.

In case you ever questioned it, that rule about changing your oil every 3 months or 3,000 miles is total hype. We aren’t sure how far that rule can be pushed, but it is a good guess that 3 years may be the outside limit. I solved that concern by trading mine in 2 months ago when Scott wrote down his last set of scans for the wrong day and I showed up in oncology to see his doctor 24 hours early. Seattle BMW employs a “don’t ask don’t tell” policy and with a smile, they accepted 5 years of service records for the 8 years I owned the car.

Rock, Paper, Scissors, Snow

2010-11-24T22:08:00.000-08:00

My head has been swirling with ideas to write about and things to update our friends and family with. But life has also been swirling too much to find the time to put it all down on paper. Last week I was in Sioux Falls, South Dakota wondering how people function when the weather is below 20 degrees and the wind blows at 1000 mph with nothing to stop it until it hits the Peace Arch in Saint Louis, Missouri. Except for feeling like I had been dropped on the Mongolian Plains, Sioux Falls was lovely. The people were lovely. Some of my colleagues thought that this was masterminded as a punishment. But surprisingly, I discovered that I love Bison burgers slathered in an avalanche of cheese accompanied by a martini and but for this trip, it is likely I never would have known that.

I may have been the only one in the airport not carrying a rifle for pheasant and deer hunting season, and that is not an exaggeration. My hotel had been taken over by a convention of dentists earning continuing education credit in the wee morning hours, leaving enough time to tote a rifle and kill things with one hand with a beer in the other.

It has been 20++ years since my grad. school roommate in Israel slept with an M-16 with a grenade launcher under her bed just in case she got called up to active duty. So, my recollection is vague. But I could swear that some of the rifles I saw as each man (and it was all men) opened his metal locking case at the United Terminal before checking it through were of similar proportions.

It was a warm homey touch that the enormous brass sculpture of Joe Foss (former president of the NRA, among other accomplishments) was looking down on us. I envisioned Charlton Heston on Mount Sinai receiving the 10 Commandments, one of which is “thou shalt kill anything winged or on 4 legs, and eat it.” It’s no fair just finding it on the side of the road, but Scott was in Arkansas the week before (one of his many unusual bucket list excursions), where that prohibition might be more lax.

Those weapons could have taken out a small town along with a pheasant (relieving it of its feathers and guts simultaneously), or a medium sized Tyrannosaurus Rex. The signs throughout the airport reminded me that guns must be in hard-sided, metal, locking cases. What I really needed to be reminded of is that I didn’t need my lovely designer suit. I needed an orange jumpsuit, to waive my arms wildly and yell “I love the NRA.” I will keep this in mind for next time. I hope there is a next time, but during a different season. I loved that bison burger.

I also almost feel cheated that I missed out on getting "felt up" by the TSA. It seems that I traveled through the only airports not doing it yet. Everyone else I have spoken to who has flown this week has stories. As far as flying is concerned, it is one big indignity, so added humiliation only increases the potential for a better story, as far as I am concerned.

So, about Scott. That is ostensibly what I am supposed to be writing about. Our activities this week remind me of a game of rock, paper, scissors, except that snow can cover anything. Scott started his nuclear bowel cleanse scanapalooza on Sunday. On Monday night we received a call that Tuesday and Wednesday were being cancelled due to the weather. We received a confirming cancellation call this morning at 7 a.m. Then at 2 p.m. Nurse Ratchet (but with less charm) called to find out where he was. They had his radioisotope milkshake and a billion dollars worth of machinery on standby and as far as she was concerned he was AWOL.

Add in that school was cancelled. It was supposed to get out at noon on Wednesday, right in the middle of Scott’s meeting with his oncologist and my meeting that was set around the schedule of a dozen other people, and therefore not easily changed for my routine mayhem. Scott and I discussed many iterations of Maya, Scans, Wendy’s job, for each phase of the week, and mostly had it worked out, until snow covered all. After the initial panic of having to rearrange and improvise, it seems that it all has turned out to be a little easier than expected. AND it allowed us all to spend a little bit more time hanging out with our NEW CAT – Miss Kitty – 7 pounds of love and part Bengal, which means that we often find her in places she can’t get down from. She has a recognizable meow that means “HELP, I got up here and now I can’t figure out how the heck to get back down.” She adores Scott and spends as much time as she can on his lap. I have discovered my inner crazy cat lady and the three of us will get through our rock paper scissors extravaganza of a week with the warmth of Miss Kitty, a few days for Scott to recover on the couch and an organic, free range, locavore, seasonally appropriate but not particularly exciting Thanksgiving dinner, from Whole Foods.

We are thankful for all of the love support and friendship we receive every day and that we don’t have to spend Thanksgiving in a hospital cafeteria.

Next up, whether or not Scott will fly to London for a Gallium-68 test or another round of chemo. This test is used to detect the recurrence of non-secreting neuroendocrine cancer. It may be used as a prophylactic chemo as well. This, among other things, will be a topic of discussion when he/we (depending on how the rocks, paper and scissors shake out) will discuss with Dr. Picozzi post-scans.

Really, it comes down to the fact that Scott has on his bucket list buying a car in Sweden or Germany, and a round of chemo for a guy who has gone through as much as he has is an indignity he is unwilling to tolerate to check off another item on the list.

The Adequate Caregiver Takes the Night Off

2010-09-22T10:26:00.000-07:00

September 17, 2010

The adequate caregiver took a mid-week night off from being a wife, mother, caregiver, lawyer. I am genetically predisposed to being early. I need to remember this and intentionally fool myself into being late so I get places appropriately on time. Last night, I attended a fashion show for local designers last night – and a fundraiser for an organization that sends kids to summer camp.

I think I was the 2nd person to arrive. The other woman in line works at Microsoft. Her name is Lee and she is a darling 29 year old who wore Prada pumps and carried a Prada bag I might have fought her for but for the fact that there were some pretty burly guys guarding the door. We discussed her struggle with all of the choices she has in life, whether she should marry the man she is with who is similarly struggling with choices, whether she should have a baby with him, alone, or adopt. We had A LOT of time to chat. And it was nice to talk to someone who was struggling with a bunch of stuff that is only theoretical. I don’t begrudge her for that fact. I am actually quite jealous.

I attended the event with a friend I worked with at Nordstrom two lifetimes ago. To say we are friends doesn’t adequately describe our relationship. Her mom identifies me as her blonde daughter. She is Japanese. It is very rare that I feel tall. Giraffe tall. With Patrice’s mom I feel like a Viking. Anyway, the festivities started at least an hour late during which time I met some amazingly strong and influential women including a rocket scientist. I was also introduced to a man who compensated for his slight stature with a big presence. He somehow shook my right hand so hard it made the wine in my left hand slosh down my arm.

The high point - SPD cops modeled men's clothes. Not quite as cute as firemen, but they will due in a pinch. The low point - the high bidders on the auction items got to walk the catwalk. Their outfits were appropriately gorgeous with fake perky boobs, Botox, puffy lips and really short skirts. It was all a bit much but fabulous for people watching. But, from the second row, with their micro-minis, it was hard to avoid seeing what kind of undergarments they were wearing, or not. How much material must there actually be to qualify as a panty? A particular leopard print pair were more decorative than functional. Much more fun to watch were the cops (the female cops - not so much).

I left at 10 o’clock, tired but appreciating how delicious it was to be driving through the torrential rain, in a part of town I usually only pass through on my way to Costco, at an hour when I am usually asleep, wearing impossibly high and uncomfortable shoes that were totally worth the pain they inflicted.

Zen and the Art of Oncology and Cake Decorating.

2010-05-24T22:25:00.000-07:00

Oncology is definitely an art more than a science. Today was a bit of a white knuckle day because, in addition to the regular discussion with Dr. Picozzi about his red blood cell count, anemia, blood sugar and his weight (131 lbs.), we were there to discuss the possibility of more chemo. Pediatricians talk about parents being sicker than their kids, just in a different way. I am sure that I have done nothing to dissuade Dr. Picozzi that I am a total nutcase. But, being the “well spouse” surrounded by a lot of people that took a bullet that somehow I missed, is an uncomfortable environment and one that doesn’t bring out the sanest part of my personality.

Like most working couples, our first few minutes of waiting for Dr. Picozzi today, following Scott’s blood draw, were spent on our BlackBerries, synching up our calendars and forwarding email to each other. Then, we went over our agenda for our meeting. He promised that the discussion regarding his bowel movement issues would be saved until the end, so that I could politely excuse myself and he could maintain an “illusion of an illusion” of romance in our marriage.

It turns out that oncology is a lot like theoretical physics. The absence of tumors is a momentous accomplishment but not the end of the story. There are still the cancer equivalents of nanoparticles, that don’t show up on scans – yet. Either they held on like cockroaches through the napalm exfoliation of chemo. Or, harder to wrap your arms around is the idea that there is some dark matter – invisible yet you can’t prove that it doesn’t exist - that will eventually turn into tumors, or might not, and nobody knows when – the black holes of oncology.

There are two ways of dealing with the unknowable – blast it with chemo, followed by a prolonged or lifelong maintenance dose, in hopes of taking out something you don’t know is there. It’s pretty hard to prove that something you never saw was successfully eradicated, so there are no studies on this approach, but it is one that is gaining traction. (The part of this theory I find most troubling is that it begins with 5 days of a high dose to see if you can tolerate it at a lower dose. Five days seems pretty arbitrary. Not being able to tolerate 5 days of martinis, walking in Jimmy Choos, or sappy romantic comedies seems like a poor indicator as to whether I could tolerate it once a month.)

Another approach is to wait until gravity and the primordial goo come together and appear on a scan, at which point it can be obliterated with a more targeted approach – interventional radiology, surgery, or a more aggressive and broader chemo regime at that time.

Liminality is fine for college philosophy and yoga retreats but generally sucks as a lifestyle. Scott favors the maintenance dose to obliterate the unknown. Dr. Picozzi hasn’t ruled that approach out but doesn’t favor it – yet. Scott’s blood tests looked good (enough), although some of the results won’t be available for another week. He has scans scheduled for July. In the meantime, Dr. Picozzi’s advice is always the same, “live in the moment because you may have 2 weeks, 2 years, or forever, you just don’t know.”

Men and women clearly “live in the moment” differently. I would like to be able to say that I take this advice as a cue to pick Maya up from school early, meditate or commit myself to public service. But I don’t – I did pick up Maya a little early, but my mind was on whether it would make sense – in the moment-- to buy a BMW, because the seat heaters in my Subaru are on the fritz, making my car practically undrivable and the Consumer Reports in the oncology waiting room gave the BMW 3-series a vaguely favorable rating (if you are a lawyer trained to make words work in your favor when you have to). I think I can speak on behalf of many women, or at least the women I know and care abut the most, living in the moment often leads to retail thoughts: thoughts of Jimmy Choo, or airplane tickets to sunny places. Men, based on Scott as representative of all men, a fairly accurate sample study size, would live in their moment naked and not alone.

Alas, we are fully clothed, Subaru owners, back to the reality of our lives as tired working parents. I regret that we didn’t find Cakewrecks, the web site about cake decorating gone wrong- http://cakewrecks.blogspot.com/ - until after Scott’s appointment, because we have managed to waste much of the evening since putting Maya to bed, laughing into our pillows to avoid waking her. There’s nothing like a cake decorated with naked babies with Mohawks riding carrots to take your mind off the moment.

Guns, Boobs and a Bar Bet Gone Wrong

2010-05-14T09:29:00.000-07:00

Scott is in Vancouver, Canada attending the 2010 Carcinoid NeuroEndocrine International Conference and Symposium for Medical Professionals and Patients. This is an international forum where the world’s top physicians and researchers talk about their clinical and biological research on Carcinoid and NeuroEndocrine tumors with each other and with patients. It also gives patients the opportunity to share information among each other. (While Carcinoid and NeuroEndocrine tumors are different, the treatment regimens are quite similar, thus they get lumped together. The difference is that Carcinoid patients don’t as often end up having Whipple surgeries because of the way their disease progresses. They are pretty easy to pick out of the crowd at these types of events - they are the ones eating the cheese doodles not the plain popcorn.)

Earlier this week, while Scott was planning what to pack, what music to listen to and what he could easily eat on the drive to Vancouver, I spent far too much time trying to figure out how to address three men and a woman via email. Should I have said “Lady and Gentlemen?” I settled on Gentlemen, since the “lady” was by copy. In any event, my serious inability to properly use salutations is one of the many reasons I was a very bad secretary. It may have held me back from a secretarial career and forced me into law, where I am currently battling with serious mortification brought about by a sort of bar bet gone very, very, very bad. This is the kind of mortification improper letter salutations could never get close to.

Like any good Hollywood date movie, our lives have multiple story lines, not all of them having anything to do with cancer. We have our minor plots as well. We often joke that we are much too generic a couple. If only we had minor criminal, lascivious or even political subplots, our story could make a good Hollywood script. It may not be script-worthy, but there has been a small “guns, boobs, bar bet” subplot running beneath the surface and behind the scenes, for exactly a year. Finally, the story arc has reached its natural end, or at least the end of enough episodes to package as a bad mini-series played by much better looking versions of ourselves.

While Scott was deep into a well-deserved chemo-induced pity party last May, I celebrated my 45th birthday with a group of girlfriends. For years we referred to our get-togethers as “tax study group.” And for almost a decade, it was. Then we started having children, becoming partners in our firms, changing firms, changing priorities, and moved our meetings to the bar at the Fairmont. Finally we dropped any pretense of study and began referring to the Fairmont as the “Club House.”

After a few glasses of wine, one member of the (non-study) group (who's identity shall remain protected lest her mother find out she has been scammed) told a story about how her mother had paid for a niece’s boob job, which each of us could laugh about heartily because it wasn’t her daughter. But then her daughter bemoaned the fact that grandma might die before she is old enough to get said grandma to pay for her boob job. I am sure a number of thoughts crossed my friend’s mind, some of them not appropriate for prime time. But she reported that one thought was that this was the kind of thing I would write about: The Boob Job Trust – the trust to hold funds in case grandma’s demise predates having paid for the “office supplies” of any self-respecting Hooters Girl.

The discussion and guffawing meandered to a then recent thread on a list serve we all subscribe to concerning gun trusts. Over several more glasses of wine much joking ensued as to whether I could get an article published combining boobs and guns, and a topic I already know about – pet trusts. It all should have ended there with two Aleve and a good night’s sleep, but that was just the end of a sub-arc.

In fact, I had been looking in earnest for something new to write about. The next morning I got up early and called someone in New York who I never had the chance to meet or even get to know. But she was a great champion of mine who, in fact, on April 20th, ended her battle with bladder cancer. Charis Emley edited Estate Planning magazine. Twice she solicited articles from me and left open an invitation to propose a topic for a future article.

While Charis lived in New York, surely she was from somewhere else, like Iowa or Wisconsin, raised to be polite beyond reason. She let me tell her the entire boob job trust story, and in my excitement I forgot to mention any connection to anything relevant to her. Finally she asked why I might be telling her this story and calling at such an early hour, at which point I described my story idea: a survey of oddball trusts. She seemed a bit concerned about the boob aspect, but I assured her that was just a lead-in for the inevitable speaking tour I had already planned for in my head. Now my real goal was to get something in print on gun trusts, which after my involvement with pet trusts and other left-leaning topics just seemed too tantalizing a possibility to pass up.

Fast forward a few months, at which point I have written about 40 pages, covering a dozen or so basically oddball trusts, during which time I may have acquired an FBI file after the amount of time I spent on the BAFTE (the Bureau of Alcohol Firearms Tobacco and Explosives for those who are as naïve about these things as I once was) web site. I called Professor Robert Sitkoff at Harvard Law School to get permission to use some of his material and to find out if he had anything more recent on business trusts than what I had found. In fact he had. I kept our conversation quite formal (which I am capable of upon occasion) in deference to his esteemed position, until he asked what my “taxonomy” was. While trying to remember if it was taxonomy or taxidermy that involved stuffed dead things I mumbled “alphabetical order,” which didn’t impress him. Apparently taxonomy is important to law professors, more so than taxidermy, and alphabetical order doesn’t count.

At his request, I read to him my list of topics, which included pet trusts (this becomes important later in the arc). He suggested that I break up my article into two sections, traditional trusts and corporations masquerading as trusts, or as he put it, “corporations in drag,” at which point I let go of any remaining pretense of formality. Our discussion also reminded him that he had planned on calling me to let me know that he had quoted my horrific testimony in Olympia on the pet trust legislation where one legislator informed me that while his dog was his best friend, he needed to remind me that the pets in his district ended up on the dinner table in mine. All of this is recorded on TVW, Washington’s public affairs television network and quoted on page 588 of Jesse Dukeminier, Robert H. Sitkoff & James Lindgren, Wills, Trusts, and Estates (Aspen Publishers 8th ed. 2009), and I am the proud owner of a signed copy.

Arc number 3 ends with the submission of a 15,000 word article to Charis, who graciously praises what I have written, suggests publishing it in multiple parts, but asks that I remove the section on guns because it might not appeal to a broad enough cross-section of readers. She could/should have just said that it would flat out be offensive to her readers. Again, evidence that she is probably from Iowa or Wisconsin.

But, one of the members of the editorial board did see the version with the gun section and asked if I could turn it into a stand alone piece, which I did. And almost exactly one year since the first discussion, Gun Trusts in Estate Planning, was published in the May/June 2010 issue of American Bankers Association Trust & Investments. I have tried to tell myself that nobody I know reads this magazine, except, to my total mortification, I discovered that an acquaintance and highly respected lawyer has written a most dignified article on ethical wills in the same issue. I am hoping to see her when we are in Chicago in a few weeks and only hope that she won’t make me wear dark glasses and a floppy hat in her presence (or even worse that she won’t wear dark glasses and a floppy hat to avoid being recognized with me).

Unless it’s Sex in the City or Oceans 11, the sequel never does as well, but I am thinking that the story shouldn’t stop here. Can I get a speaking gig at an NRA conference? Can I use a gay couple as one of my examples and weave together gun ownership and the need for marriage equality? Should I wear a suit and pearls or do it up all Suze Orman with lots of hair gel and red stilettos? These are the pressing questions we are faced with in the new normal.

3 Days, 3 Ways

2010-04-21T21:56:00.000-07:00

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).

Bob the Builder is Back!

2010-04-15T18:26:00.000-07:00

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.

2010-04-11T16:59:00.000-07:00

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

2010-04-05T06:51:00.000-07:00

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

2010-04-05T06:49:00.000-07:00

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.

The Nuclear Laxative

2010-03-14T12:00:00.001-07:00

Sunday, March 14, 2010 1:55 PM, CDT

Scott has another set of scans looming in about 10 days. Until then he has been preparing himself for his anticipated return to work in April: physically, emotionally, sartorially and gastronomically.
It occurred to him that it wouldn’t make a hugely positive impression if he were to show up to his first meeting with a box of Cheerios, and possibly excuse himself half way through to take a brief nap. So, I sent an email to the person who, if Jews were to have Guardian Angels, he would be ours: Bill Sperling. I told Bill that as a Columbia Law School grad, Scott had picked up some mean alphabetizing skills along the way, and was open to any kind of short-term volunteer gig that wouldn’t expose him to wheezing and sneezing people. By 10:30 the next morning Scott had lined up a couple hours of shelving books in Maya’s school library followed by a short-term project at Children’s Hospital, thanks to Bill, who seems not to have read all the way to the end of the email about not wanting to be around sneezing and wheezing, but it has all worked out in the end.

Both places offer unlimited access to Purell and the Children’s office he is working in is across the street from the main campus, but does contain the day care facility – pretty much a large scale Petri dish -- but we try not to think about that fact.

Scott’s trial re-entry into the structured world of work is mostly going well. He is much more exhausted than he expected, having a hard time figuring out what he can eat, but happy to be around other people and even happier at the prospect of soon being back at his real job. Not that alphabetizing hasn’t been a good transitional step, he doesn’t see it as a long-term fulfilling activity.

The last couple of days presented a new challenge when he ran out of one drug and took a substitute (one that the doctor had previously provided as an option) but then suddenly became too foggy and tired to figure out what might be the cause of the fogginess and exhaustion. After about 36 hours and my insistence he talked to his doctor, who figured out the problem. The solution has been another 36 hours on the couch.

He seems to be coming out of his fog and just in time for our family trip to Legally Blond at the 5th Avenue Theater. We realize that this isn’t exactly high art. In fact, some don’t even consider it art or even theater, except that it does take place on a stage and the three of us are all looking forward to a couple hours of lighthearted, mindless entertainment.

Coinciding with Scott’s scans, I have a trip scheduled to the Bay Area for work. So, I will be flying into the same airport Scott’s sister will be flying out of just a few hours later, to keep Scott and Maya company through a couple of days of unpleasant pre-scan “bowel prep” (the “nuclear laxative” experience, which Dave Barry described in vivid hysterical detail much better and more honestly than Scott would ever allow: http://www.miamiherald.com/2009/02/11/427603/dave-barry-a-journey-into-my-colon.html) followed by a 2 day scan-a-palooza.

We are thankful that Liz has the flexibility to step in and hope she knows what fun she is in for (in other words, that she hasn’t yet read the Dave Barry column).

If I happen to enjoy a fabulous meal in San Francisco while I am there, I have promised to keep that fact to myself. The story line is that it is all work and no play.

Thank God for Johnny Depp

2010-02-26T14:31:00.001-08:00

Sunday, February 20, 2010 11:19 PM, CST

I am remiss in updating Scott’s status. Generalissimo Francisco Franco may still be in the hospital (my diehard SNL watching friends might remember that era), but Scott was discharged on Tuesday, February 9th. In fact, my friend Wendy Kizzier had just arrived with a fabulous meal and had even poured two glasses of wine when Scott called to say they were discharging him. Until his call, for almost 5 whole minutes there was a calm in our household. By 7:30 I was at Walgreens to fill his prescriptions, and by 8 p.m., was reduced to tears when the pharmacist insisted that his prescription insurance had been cancelled so the bill would be $30 for one medication and $8750 for the other. “How would you like to pay for that?”
I confess that the ensuing few minutes, while the pharmacist “made some inquiries” weren’t entirely bad – pretty close though. Johnny Depp was on the cover of GQ. He kept me company. Early the next morning an insurance rep helped me straighten out only the latest insurance fiasco, confirmed that it had not been cancelled, and gave me an explanation that I was not yet sufficiently caffeinated to understand. In the midst of my telephonic 19th nervous breakdown, we bonded over the fact that she is convinced that Johnny Depp was the MBHA (apparently, I should have known that stood for “most beautiful human alive,” which I agreed with only because she was so helpful and it is more likely than not that I will need her assistance in the future). And, as our Johnny Depp impromptu fan club was forming Maya displayed the first symptoms of a 24 hour stomach flu, all before 6 a.m.
At one point we thought that we had defied statistics and it was simply a 6 hour stomach bug, so a friend took her to school. No such luck. 24 hours really means 24 hours, and that last few hours at school did not earn me any mommy points with the school’s maintenance staff.
Scott’s recovery and life at our house seemed to continue on a similar trajectory until the weekend when the festivities of my step-sister’s wedding swept us all up. Michael Weil and Dannielle Toner are two wonderful people, lucky to have found each other, and our lives are all richer and fuller with the addition of Uncle Mike and his family. Maya was an adorable flower girl along with her new cousin Jessica and the whole event was announced in the New York Times, which I didn’t discover until 4 days later when I had time to read the Sunday paper:
Scott missed most of the festivities but made a brief appearance at the wedding, dapper in his tux, with the tubes of his abdominal drains threaded under his cummerbund and the actual drains in each pocket.
His follow-up appointment went mostly well, except for some damage to his dignity and the not surprising news that he needs to gain weight. Apparently, he was informed, he has been wearing his orthopedic compression Spanx too high. His doctor informed him that it should rest at the “bra line.” As much as I have tried to convince him that this is an expression women use and not indicative of her mistaken assumption that he cross-dresses, his manliness, like Lindsey Vonn’s shin, seems to have been badly bruised. To add to the humiliation, his doctor handed him a pamphlet for Design Veronique, available at http://www.designveronique.com/ (which could never be confused with the type of lingerie for women, or even men who dress like women, but is covered by insurance), and suggested that he may need to order more orthopedic Spanx, since he will be wearing them for quite some time. As we know, Lindsey Vonn made quite a comeback. Scott, however was informed that he is off the slopes for the remainder of the season. His next set of scans will be in late March. Between now and then he is sleeping, gaining weight one bowl of cereal at a time, and would enjoy company. Just call ahead to make sure he is dressed appropriately….

Life in South Park Mode

2010-02-26T14:30:00.001-08:00

Monday, February 8, 2010 11:30 PM, PST
I am not quite sure exactly when our life started to feel like we are perpetually stuck in a lost South Park episode, but it did and we are. It was probably somewhere between Scott’s 2nd and 3rd room change, or when he discovered that he no longer had a belly button and lamented losing forever the opportunity for a piercing there Yes, the plan was that he would be home on Sunday, in time to watch the Superbowl. Yes, it is nearly Tuesday and yes, the Toyota analogy is hitting just a little too close to home.

Scott’s first room change had to do with the amount of dust being stirred up by construction in the hospital’s addition. He, along with everyone else on his floor, was evacuated, seemingly randomly throughout the hospital. His new roommate was an unfortunate pairing – Scott was suffering from epidural induced hot flashes. It might have made more sense to move him to the maternity ward. In any event, that room lasted just a few minutes less than the amount of time it took the facilities department to send up a fan. Scott spent the next 11 hours in room number 3, deep into menopause like symptoms and without a fan (all the while I did my best David Copperfield imitation, complete with fingerless gloves, trying to ignore the fact that the heat was off and it is early February) . By the time he and his fan were re-united the acute pain team had decided it was time to remove the epidural, so he was cold again, but in a private room.

Then, somehow it was determined that the person across the hall was too radioactive. Harkening back to the months that Scott was radioactive and I slept next to him, I am wondering how much is too much. But, in an effort to avoid a re-enactment of the horrible hospital Silkwood shower scene, he was relocated to room number 4.

How did Silkwood morph into Southpark or vice versa? As anyone who has had GI surgery knows, they won’t let you out until your digestive system wakes up. So, like a Toyota accelerator, Scott’s digestive tract seems to be stuck and no factory retrofit package is yet available. In spite of that fact that he is on a clear liquid diet, an officious dietician brought him two handouts – one on how a high fiber diet can help constipation and another on how a low fiber diet can achieve similar results. How he didn't lose his temper is really beyond me.

My still brilliant lawyer husband, who early this morning was able, off the top of his head, to describe the significance of an F/A-18D fighter jet (either it’s a navy multi-mode plane, that combines a fighter -- the "F18" with an attack aircraft the "A18" -- or he just made it up and I believed him) is now calling me hourly to describe how close to possibly passing gas he might be.

When he does come home, he will be sporting the equivalent of orthopedic Spanx, for several weeks. I told him this apparatus looks like what Lady Gaga will be wearing when she performs at the Superbowl 25 years from now. Oddly, he wasn’t amused, or he was just too drugged to be insulted. And frankly, it is what the members of the Who should have been wearing when they performed during Sunday’s Superbowl half-time, which we caught briefly as Scott did laps with his IV pole. (Whether they should have even been allowed to embarrass themselves and whether any amount of green laser beams could have covered up their cringeworthy performance is another topic – one that might have made Scott laugh, so was therefore off limits).

The Toyota of Health Care

2010-02-26T14:29:00.001-08:00

Saturday, February 6, 2010 12:24 AM, CST
In what now seems like a most unfortunate article in the Washington Post, Ceci Connolly wrote, on Friday, June 3, 2005: “The inspiration for Virginia Mason's newfound approach to cancer care came from a most unlikely source: the assembly line at Toyota Motor Corp. Like the Japanese automaker's plants, the glistening new cancer center here was designed around themes of high quality, super-efficiency and putting the customer first. Errors are embraced as learning opportunities, and every one of Virginia Mason's 5,000 employees is encouraged to offer ideas. According to hospital executives and some industry analysts, the management principles that made Toyota the world's most successful car company could have similar results at Virginia Mason.” Ouch. Luckily, Scott didn’t have a sticky accelerator and as far as we know, no errors were “embraced as learning opportunities.” In fact, the whole Toyota concept seemed to have been kept under wraps today.
What was embraced, however, were many back issues of “Trailer Life” magazine. Its seems that for every copy of Southern Living found in the M.D. Anderson surgical waiting area there are at least two even older copies of Trailer Life. My decorative mint julep decorating skills may be fading into the medical past, but I swear to god, I now know how to make fried chicken gizzards at home without the benefit of a commercial fryer (a sprinkle of Mrs. Dash in the batter, apparently, is the secret ingredient), you can also use Drake mix and beer for the coating and fry at 375 till a golden brown for a pretty good home cooked version, but on the road Gizzard City south of Lansing, MI off I-69 has the best ever chicken gizzards. And, if that isn’t frightening/enlightening enough, after 6 hours of not much else but a giant computer screen reporting the status of each surgical patient by number (Scott being #1386), in a 60 second rotation, if not for the generosity of our friend Lavinia Touchton, who brought me much needed lunch and distraction, I was starting to think that the key to our happiness might just be eco-friendly living in a Lance Camper (interview with wilderness expert and survivalist Brian Brawdy, December 2008) or maybe a brand new Keystone Raptor, whatever the heck that is anyway.
Thanks to Lavinia’s timely intervention, Maya and I are safely at home, with a basement and foundation beneath us. Scott’s surgery went as planned except that his surgeons admitted to pretty much having to improvise, lacking experience with such a thin fat layer. Typically they place 4 drains for this type of surgery but guessed that 2 should suffice.

His surgeons have warned him (and me) that he has a particularly painful recovery ahead of him, but for now, as long as he doesn’t inhale or exhale (or laugh), his epidural is doing what it needs to do. If all goes as planned, he will watch the Super Bowl from Virginia Mason and return (not to a Keystone Raptor) to our conventional, mint julep cup-free home, sometime on Monday. Thanks to the generosity of our friends, it is well supplied with good food (and wine) to nourish our bodies and spirits.

$54,000 and we still haven't remodeled the bathroom

2010-02-26T14:28:00.000-08:00

Sunday, January 31, 2010 11:15 AM, CST
When Maya woke up on Saturday morning she asked Scott to check the score of the Bush school basketball game last name. Revelation – Bush has a basketball team. Yet another activity that completely eluded my attention. At the time, I was on the dining room floor updating our unreimbursed medical expense spreadsheet for our 2009 income tax return. Apropos of nothing except what a crazy place we still find ourselves in and why healthcare needs to be reformed, I am at just over $54,000 in co-pays, unreimbursed, not covered, travel, parking, mileage and other miscellaneous medical expenses. This doesn’t even account for the stuff that isn’t deductible (over 7.5% of one’s adjusted gross income to be precise), like Scott’s experiments with black raspberry powder, Chinese herbs, Nestle supplementary nutrition, aromatherapy and other varieties of near-voodoo, as well as the Barbie Band-Aids and all of the nonprescription medication we all took in 2010.

In any event, while I was sifting through the detritus of cancer, Maya asked Scott how you pick the team you want to win: “is it the better sounding name, the better looking athletes, or what?” It should be profoundly obvious that sports don’t make it onto the radar at our house, so it is surprising that she knows enough about the topic to even ask these questions. But it hit me -- my professional life right now is all about how I can stay at the top of my game and at home my job is helping Maya and Scott get up from the bottom of theirs. Both jobs are more than full-time. And what does “top of my game” mean when the rest of the family has hit bottom.

Somehow, during the evenings that Scott was trying not to vomit and Maya was asleep, I managed to write an article that will be published in two parts in July and August this year. The estate tax expired for one year on December 31, 2010, which has propelled my law practice into frantic overdrive to deal with the challenges caused by this complete Congressional failure and irresponsibility. Yet, Congressional inaction has also created a tremendous and exciting tax planning opportunity. And the hard-charging lawyer part of me wants to take advantage of those opportunities for my clients and to participate in the nationwide professional collaboration that is going on to understand and respond to those opportunities. I found myself somehow volunteered to be on a State legislative drafting committee, which is the last thing I have time for. But legislative drafting is my guilty pleasure (along with Us Magazine in the grocery store line), and I have been able to participate by conference call, which allows me to multitask in a multitude of ways and accomplish things that otherwise wouldn’t get done – dig below the emergency top layer of my in box, drink coffee while it is still warm, eat lunch, and look out my window (in addition to world class art, including the giant Calder, from time to time I am treated to a platoon of bicycle cops training in the Olympic Sculpture Park, also a sight to behold if not a bit distracting). Yet, when Maya and Scott are discovering their own new personal lows it seems inappropriate to seize the opportunities that are so tantalizing in my professional world. So staying at the top of my game has morphed into resisting the temptation to nap face down on my desk, dealing with the most recent irritated client and hoping that they will stick with me until I can get back to the former version of myself who prided herself on being able to exceed expectations.

To say that Maya has had a rough school year would be a gross understatement. Among other things, she was recently diagnosed with a potential hearing disorder. So, we are adding yet another specialist to our cadre and adding to my motherly sense of guilt for every time I got irritated when I asked her to do something and assumed she was simply ignoring me. This week Scott found out that he is severely anemic – which can be treated with a series of iron shots and supplements – but troubling as to its cause. He also broke a filling that at first needed only a crown but on Friday when he went to have the crown seated they decided he also needs a root canal - tomorrow. He has a somewhat short timeline because next Friday, at 6:30 a.m., he is scheduled for a Multilayer Reconstruction of Abdominal Wall Defects with Acellular Dermal Allograft and Component Separation. So, he has the unusual privilege of going straight from the endodontist following his root canal back to the dentist to seat his crown, and get it all wrapped up in time for him to get off the Tylenol and start his pre-op enforced fast and “bowel prep” prior to Friday’s extravaganza. Not the end of the world by any means, but he hadn't planned on spending likely his last day of skiing for the season sedated by Valium and nitrous oxide, plugged into an Ipod, which, come to think of it, doesn't sound that bad.

The best thing we can say about his upcoming surgery is that it will be in Seattle and he gets an epidural, so I get to sleep in my own bed and Maya will have to endure one less disruption. Scott will be in the hospital for a couple of nights. We hope to have him home by Sunday. (But he has made clear his preference, if offered a Sunday afternoon discharge instead of Sunday morning, to stay until Sunday night and watch the Super Bowl from a hospital room.) He expects a 6-8 week recovery, the first few weeks of which will be spent not far from our living room couch, and would welcome visitors. Maya and I would welcome a home cooked meal. Actually, we would welcome a meal, period. And we would all welcome some sleep and sanity if anyone has any to spare.

We expect Scott’s surgery to proceed without complication, but I will provide an update on Friday as his general anesthesia wears off and epidural gets titrated to quash the pain, a routine we have gone through enough times that it has become a familiar and bizarre routine complete with our own in-jokes that embarrass the heck out of me but endear him to the nurses, the orderlies and the semi-conscious patients within earshot.

The Post-Treatment Depression Ambush

2010-01-17T09:42:00.000-08:00

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.

"Road Toast"

2009-11-29T20:17:00.000-08:00

I am remiss in providing an update following Scott’s last scans: All clear except for one funky looking lymph node that they will watch but assume is merely an artifact of his recent surgeries. He still gets weekly blood tests but won’t need a complete panel again until January, followed by his next set of scans in March. With a huge sigh of relief we dove into planning some much needed vacations.

Thoughts of vacation remind us that it is with much sadness that we say goodbye to Frank Bruni as the New York Times restaurant critic and to Gourmet Magazine. We especially enjoyed Jane and Michael Stern’s “Road Food” column. But, we aren’t likely to have the financial or fat gram budget to ever dine where Frank did, and the Venn Diagram between Scott’s 5 grams of fat and Jane and Michael’s fried chicken followed by fried apple pie a la mode road tour doesn’t look so good. So, their sunset and our upcoming vacations, as well as our ongoing staycation, present us with the opportunity to create our own column: “Road Toast.”

Our first “Road Toast” experience will be in Santa Barbara in February. We are very happy to be back in the rainy PNW after our sojourn to Houston, but we will definitely be ready for toast in a warmer climate by February. Then, in April we are taking a road trip to Whistler with some other families from Maya’s class, to experience Canadian toast with spring skiing.

We welcome all “Road Toast” suggestions.

Locally, we favor Essential Bakery’s toast. In spite of its slowwww and apathetic service (on a good day), and slightly grimy atmosphere, we give it high marks for its 5 types of toast, warm ambiance, earnest recycling program, proximity to home and Maya’s school, and our extremely fond memories of their Reuben sandwich.

Back on the health front, Scott’s insurance company sent a letter suggesting he participate in their lifestyle modification plan to help him get off Nexium (and save them money by getting him to take their recommended and completely ineffective over-the-counter substitute). The letter thoughtfully suggests that he consider certain lifestyle modifications, including regular exercise, eliminating fatty and spicy foods, reducing stress, and cutting out alcohol and nicotine, which may also make him healthier and more energetic in general. This came the same day as yet another letter approving him for 999 doses of TPN not to last past a date occurring a week prior to the date of the letter, which brings him up to about 43,500 approved doses. Surely the elimination of the job of the person who generates these letters would not decrease customer service or increase the cost of patient care. And the person with the MBA who came up with the Nexium plan needs to solve real problems, or at a minimum improve the metrics that cause the computer to generate those thoughtful suggestions. However, out of respect for their wishes, Scott has vowed to cut back on visualizing fried foods except on special occasions.

GET YOUR PURPLE ON

2009-11-17T10:33:00.001-08:00

Today begins Scott’s 2-day Scan-a-Palooza. The poor guy was on an all-fiber diet over the weekend and since yesterday is limited to clear liquids until he finishes his scan marathon tomorrow afternoon. All of this is to confirm that he remains tumor free.

In spite of the task at hand, we are well-aware that November is National Pancreatic Cancer Awareness Month. Don’t expect a broad assortment of greeting cards and decorations to mark the occasion. But, if you are so inclined, Pancan.org suggests a few festive, if not more than a little odd, ways that one can observe the occasion:

1. Wear something purple all month. Presumably this isn’t meant as penance for you or your loved ones, friends and colleagues, so please launder said purple item periodically.

2. Bake something purple and share it with co-workers and friends. But remember that if they have or had pancreatic cancer, they can’t digest more than 5 grams of fat at a time – visualize purple toast.

3. Tie a purple ribbon around the trees on your street.

4. Put up a yard sign.

5. Or finally, Paint your front door purple.

If you don’t love your purple door, it’s only for one month, which is already half over, and next month brings a whole new list of observances, each with its own color scheme:

There’s Cancer-Related Fatigue Awareness Month (I am guessing its promoters aren’t sponsoring a 10-K to mark its passing). You could paint your door brown for Colorectal Cancer Education and Awareness Month. Color me rainbow for AIDS Awareness Month. Paint your door any color, just make sure it was made in America (bonus points if union made), for National Made In America Month. Paint your door blue for Seasonal Depression Awareness Month, but we understand if you are too depressed to tackle opening a can of paint until next summer. Use non-toxic paint for Safe Toys and Gifts Month. Don’t waste time painting the door because it’s National Sign Up For Camp Month, and if you haven’t done it already, you may be too late. Please wash your hands afterwards for National Hand Washing Awareness Month. Read something by Martha Stewart and pick the perfect door color for Read A New Book Month. Add another dead bolt and paint your door a color that won’t call attention to you, your home, or the fact that if you do have pancreatic cancer and therefore you are at the doctor’s office for much of your waking hours, tipping off those thieves that you are easy prey and might have a mailbox full of prescription narcotics to boot for Identity Theft Protection and Awareness Month. Leave your door purple for another month because somewhere else it might still be November if you observe International Calendar Awareness Month. Paint your door like Jackson Pollock would have for Art and Architecture Month. Borrow money to buy new paint, and promise that if you default you will seek a government bailout for National Write A Business Plan Month. December is also International Sharps Injury Prevention and Awareness Month, a cause we support year round by leaving our Sharps container on the kitchen table since you just never know when you might need it handy, or Barbie may become a heroin addict. And finally, Procrastination Awareness Month. If you don’t get around to repainting your door for a while, or if you leave purple for Pancreatic Cancer Awareness Month 2010, we understand.

What you can’t do, even if you really, really, really want to, is install purple whale-penis leather seats in your Pombron Monaco Red Diamond Edition SUV, thanks to the World Wildlife Foundation and no small part played by Pamela Anderson (of Bay Watch notoriety). http://www.wired.com/autopia/2009/11/dartz/ While pretending to be absolutely mortified that I was using my work Internet browser to follow this paragon of investigative journalism, Scott laughed his head off, took some Celebrex, and came back for more.

Hospital - Day 2 as the Adequate Caregiver

2009-11-13T12:19:00.000-08:00

This post was originally published on SATURDAY, AUGUST 23, 2008

No discharge today. It’s amazing how two days ago I was in my office doing my lawyer thing, Scott, dressed in business attire, was stopping in for a doctor’s appointment on his way to work, and today our entire world is upside down. Now he has a bunch of IV drips attached to him in an institutional yellow hospital room, permeated by the smell of Purell.

The morphine finally quelled the pain but it made him really sick and then all the side effects of all the other drugs dripping into him built on each other into a crescendo of vomit.

They are ready to move him to Virginia Mason Hospital but would prefer to get the nausea and barfing under control before putting him in an ambulance.

I did my best to explain to Maya that daddy wasn’t feeling well enough to come home last night and that he was spending the night in the hospital so he could feel better before coming home. She seemed to understand as well as a 6-year-old could be expected to. Frankly, I don’t understand, so I don’t expect that she can really digest how our world has changed so quickly. She seems to be calming herself by wearing Muppet printed surgical masks as an accessory, with a matching one for her most precious stuffed animals. It really is all about the accessories, even in a time of crisis.

I figured out the washer and dryer last night and found an old printout of Scott’s passwords, so I can start to access our online accounts (which I have also been blissfully ignorant of), and pay our bills. I can only imagine what our medical bills are going to look like.

It is astonishing how quickly things can fall apart in a home when nobody is taking care of it. It also highlights just how much each of us is responsible for- because neither of us is too responsible for much right now, with no immediate plans to become those responsible adults we used to be.

First Post

2009-11-13T09:44:00.000-08:00

This post was originally published on August 22, 2008

Scott went in this morning to Swedish Hospital for what was supposed to be a routine biopsy (as if getting one's liver biopsied is a routine occurrence). This was a follow-up of yesterday's ultra-sound, which revealed tumors in his liver and pancreas, of indeterminate type. Too much time was spent on the Internet last night reading about all of the really terrible possibilities. Note to self: resist the temptation to dip your toe into the murky sea of misinformation. Do something sensible, like drink a glass of wine and get some sleep. Or find some web site that suggests what fashion statement the good caregiver wife should be making for fall 2008.

Although the surgeon explained the many possible complications, Scott, being the over-achiever, experienced one that wasn't on the menu. In spite of all of the anesthesia he experienced spasms of pain that they weren't able to control without inserting an IV. I am not sure exactly how long the whole ordeal took, except that a woman went into labor and gave birth while I was waiting for the nurse to come back and let me know that he was ready to be taken home. Instead, I got a doctor, who took me to a private room. I have learned from watching ER on TV that this is never a good sign. He had to be admitted to Swedish Hospital to get the pain under control. In retrospect, he admits that he might have been a little melodramatic, but in any case, he wasn't in any shape to go home and the Valium drip took the edge off of his day. I am on my way home to take the edge off mine. We hope he can go home tomorrow.

Ultimately, the plan is to be able to move him to Virginia Mason by Monday for two procedures: another biopsy and to have a shunt inserted his bile duct, which is currently blocked by the pancreatic tumor, to allow his bilirubin to go down (he is starting to look at little like Big Bird, especially his eyes). Swedish couldn't do both on the same day, Virginia Mason can, and from the research we have been able to do in a very short time, they seem like the right place to be for pancreatic cancer in Seattle.

Maya knows that dad had a tummy ache and was going to see the doctor today. Nobody expected that he wouldn't be home for dinner. So, I have a lot of explaining to do.

Then I need to figure out how to turn on his fancy washing machine. I honestly don't yet know which is the washer and which the dryer. That's his job darn it and I have been blissfully ignorant and would have been quite content to remain that way.