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
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
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
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.
