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
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.
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)
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
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?
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
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.
