Today I spent most of the day at Folklife, where I had three gigs to play. I was going to write about what fun those gigs were, and about the many friends from near and far whom I saw, and about the glorious weather that we had despite a forecast of rain. But I’m just too tired. I need to sleep. Now. At least tonight it’s a good tired.
Despite predictions that had called for rain all weekend, the weather in Seattle today cleared, and was bright and sunny during the morris dancing performance at Folklife. I sat in the audience, mainly waiting to see how the rapper team did in their major stage set of the weekend. (There are some other non-stage performances at the festival as well.) I had the unusual Seattle experience of wishing for sunscreen. Though, truth be told, it was surgery-related. I’ve been told to make sure my graft site doesn’t get too much sun, lest it burn and stay purple forever after, and I also wanted to keep my neck scar out of the rays. I made do by draping my sweater over my shoulder.
This morning the nurse from the medical supply company came (late) to show me how to operate my feeding pump. I’d read the instruction booklet by the time she got here, and, since I am smarter than the average bear, I turned out to know more about this model of pump than she did. She apparently felt the need to make up the time not spent teaching with chatting incessantly, but finally I got her out of the house before I had to go down to the festival. (I couldn’t help but think how this woman’s salary was helping to drive up medical costs. Someone needs to do that job, but it could be so much more efficient. Sigh.)
Anyway, I did use the pump this afternoon, to administer a round of diluted spacefood without major difficulty. The major advantage was that I could carefully and consistently control the flow rate, which makes a difference. The pump also has a battery, and a nifty carrying pack, so I could haul it around with me while working on a long feeding.
But for now, it’s time for sleeping.
The pump for Paul’s tube feeding was delivered today. It will enable him to carefully regulate the rate of feedings, and to take in some calories very slowly overnight, if the wants. A home health care nurse will be coming by tomorrow to show us how to use it.
Paul ordered the new formula today. It is a low-osmolality, or near isotonic formula. Paul found a very interesting bit of information today on tube feeding formulas from – imagine that – the University of Washington Medical Center. It’s from their extensive on-line resource on nutrition for pre-term infants (who apparently sometimes need tube feeding). This is not information that we’ve received from anyone at UWMC. They say:
The osmolality of a formula has a direct influence on the gastrointestinal (GI) side effects that occur with enteral feeding. Osmolality refers to the concentration of osmotically-active particles per liter solution of formula, expressed as mOsm/L. The osmolality of a formula is affected by the concentration of amino acids, carbohydrates, and electrolytes. Formula with a higher osmolality than that of normal body fluids produces an osmotic effect in the stomach and small intestine; this hyperosmolality draws water into the GI tract to dilute the concentration of the formula.
An influx of water into the GI tract may cause diarrhea, nausea, cramping, and distention. Isotonic formulas are designed to alleviate these problems. The osmolality of full-strength isotonic formulas is similar to the osmolality of normal body fluids, approximately 300 mOsm/L.
Hmmm… the problems related to hyperosmolality sound familiar. Perhaps that’s the problem. The osmolality of the spacefood is a whopping 950, more than three times that of normal body fluids, so it could be sucking lots of water into Paul’s GI tract. Here’s hoping the new stuff, with an osmolality of 350, will work a whole lot better for Paul.
Three months since Paul’s surgery… I go back and forth between thinking “Has it already been three months?” and “It has only been three months?” My sense of the passage of time is out of whack.
As you will have gathered from the past couple of days’ posts, the three-month report is, well, mixed. I try to remember to be thankful every day that the squamous monster is gone, and that, for the most part, Paul is healing well. Unfortunately, I don’t always manage to do that, particularly not when my sweetheart feels ill from a feeding, and I can’t do a damn thing to help him. This three month anniversary is a frustrating reminder that Paul’s doctors thought – or at least said – that he’d be swallowing within “a couple of months” after surgery. He is swallowing a little bit, but not easily, and not nearly well enough to do without the tube feeding. This is not the way it was supposed to be at this point!
I was thinking today that I want to talk with Dr. Futran again. I want to hear what his thoughts are on Paul’s swallowing problem, and whether he has any suggestions for how to proceed from here to get Paul eating real food again. Paul has a follow-up appointment scheduled in early July, but that feels like a really long time from now.
That’s about all that it feels like we’re doing right now… just concentrating on getting through each day, one slow, slogging step at a time. My sister told me when she called today that, until Paul’s post last night, she hadn’t realized that we were still really struggling with feeding issues. Looking at the posts from the past few days, I can see where that would be the case. For me, at least, it has been easier to write about the cats, or our anniversary, or dancing, than to catalog my daily worries about Paul’s digestion, his swallowing (or lack thereof), his state of mind. Anyway, here’s today’s report, such as it is…
This morning we tried to get in touch with folks at UW to let them know that things aren’t going well with Paul’s tube feeding. Paul called Carol, the nurse practicioner in Dr. Futran’s office, who is our all-purpose hospital contact person. I called Judy, the UWMC nutritionist with whom we’ve had a couple of conversations about formula options. Neither of them were at their desks. We left messages… and then we waited. I did some work here at home. Paul slowly put some food into his body, in fits and starts due to the now familiar discomfort.
Late this afternoon, Judy called back and talked with Paul about the problems he’s having. (It was good that he spoke directly with her – rather than my talking with her – because he can give her a much more accurate and detailed description of what’s going on with his belly than I ever could.) They discussed a couple of things that we might try: switching to a different formula that she says is usually very well tolerated, and starting to use a pump, which would give Paul better control over his feeding rate than he has with the gravity-feed bags (with their cheap plastic control valves) that he’s using now. Judy said that she’d call Carol tomorrow to discuss this with her, and would then call Paul again.
At about 6:45 p.m., Carol returned Paul’s call. She said that she’d left a message for Judy, but hadn’t heard back from her, so Paul filled her in on the conversation that he’d had with Judy. I think he also told her a bit about the physical therapy appointment last week. He told her that he needs help with working out the problems he’s having with food, because he’s really feeling drained. Carol said she’d talk with Judy and call Paul tomorrow.
So, Paul should hear from both Judy and Carol tomorrow, and some sort of change should occur in the regimen… and we really, really, really hope it will make things better.
In closing, a question: what do you use for any upset tummy? We’re taking suggestions (liquids only, of course).
(For what it’s worth, I’m passing up the opportunity to write a post about the E-bay auction for tin-foil hats for your pet, to protect them from Government Mind Probes. As far as I’m concerned, the Gubmint is welcome to all it can get out of our cats’ minds, and besides, there have been enough cat entries lately. If you need the link, I can email it to you.)
I’ve been doing the massaging of my scars, and the neck stretching exercises. There is improvement happening, but it’s small.
It’s not really enough to offset the bouts of despair I’m feeling, struggling with the feeding, the fatigue and the pains. It’s worse right now, because I didn’t sleep well last night, and that adds an extra level of “tired” to my background fatigue. I’m also behind on calories today, and my stomach is a burbling cauldron at the moment, and I don’t know what I’m going to do about that. It’s frustrating because things were going pretty well until late afternoon. Then one meal of something that usually goes down smoothly knocked everything off the track. (I hate how unpredictable this all is.)
I feel stretched pretty thin. Tomorrow I’ll be calling the folks at UW, because this really isn’t sustainable. I don’t feel confident that they have anything to offer me, but I need help. This isn’t working, not really.
Now I’m going to try having some juice, hope it doesn’t hurt too badly, try to take my evening meds, and get some sleep. Let’s hope I get more rest than last night.
Good people, pray heed my petition,
A story to you I will tell;
A story of love and of honour,
And a story of dancing as well.
A dance of the poor and the gentry,
Of labour and love will arise,
There are no finer ones in the country,
In England or Ireland likewise.
— Rapper sword dance “calling-on” song
As I mentioned yesterday, Memorial Day Weekend in Seattle is the Northwest Folklife Festival. So this week, musicians, callers and dancers from all over the Northwest are getting in one final rehearsal before this weekend’s big show. Sound & Fury Morris & Sword – our team – got together tonight. We have a couple of new dancers in the rapper set, so Paul brought them this piece that he wrote about performing rapper. While parts of it are specific to rapper dancing, much of it can be applied to other types of performing as well.
My rapper persona, “la Virtuosa,” sings the calling-on song like an angel, fiddles like the devil, and has never played or sung a wrong note. Not ever. (Read on… you’ll understand.)
The Difference between “Dancing Rapper” and “Performing Rapper”
Rapper is an “act,” a spectacle, a show. It, unlike Morris, is not about some ancient fertility rite, calling a blessing on the plow, or some other facet of rural agrarian life in Jolly Olde England. Rapper is about showing off, and it evolved in a culture where the important qualities were strength, agility, speed, precision, bravery and, oddly enough, nobility.
Like vaudeville, rapper is an entertainment for the audience. Old rapper kits often look like military uniforms, just like a marching band or a drill team. The traditional calling-on song sets the scene: audience, these are not mere mortals before you. These are honest-to-goodness heroic characters, the best and the brightest. The verse runs “there are no finer men in the country, in Scotland or Ireland likewise.”
Therefore, to really “perform” rapper, beyond merely “dancing” it, you all need to have a persona, a character you inhabit when in front of the public. Pick a moment before the performance when you will assume your character’s attributes. Maybe it’s when you put on your sash. Maybe it’s when you take your sword. Pick a specific time, and, at that moment, stop being your day-to-day self and begin acting differently.
Imagine your own best quality. Your persona has 10% more of it. Imagine your worst feature. Your persona has never had it, and never will. Your persona is confident. Your persona says, “Yes, I DO run with scissors. I like running with scissors. In fact, I even play with them while I’m moving!” Because, that’s what rapper is like.
It’s not about arrogance. It’s not about showing off out of some neurotic need for approval. It’s not about trying to show that you are soooo clever. It’s just that you, in the form of your persona, are just so good, so fearless and talented that you can’t keep it inside anymore. It’s bursting out of you, this joyful excellence. It’s shining in your eyes, it’s glowing in your skin, it’s beaming in your smiles.
As you inhabit your persona, you’ll discover that it is fun to be larger-than-life. You can be stronger, faster, more skillful. It’s great! You toy with flashing steel, because you can, without fear, and with exuberance, and moving precisely at lightning speed. You are amazing!
By taking on these personas, you can subtly put that message across to the audience. It will transform your dancing. It will change the way you interact with the audience. Your personas are not shy. The audience will be drawn in, and start to feel the joy and the fun, at the core of the performance. They will respond.
This is the difference between a good rapper team and a great one. This is the trick to wowing a crowd, and, in the process, having an amazingly good time. Though it may feel odd at first, give yourself the freedom to really take on these personas. We don’t get enough opportunity in normal life to play-act, to leave behind our drab selves and become someone larger, better, more radiant. Try it. You may find, that, besides completely transforming the audience’s experience of the dance, it will also completely transform your own.
Today is our sixth wedding anniversary.
We celebrated our first five anniversaries with fine food and, when possible, travel. We spent the entire day and night of our first anniversary on a flight from San Francisco to Rome. That day was definitely just about travel. However, the following weeks in Umbria and Tuscany were filled with fabulous food (as well as buildings, the countryside, and violins).
We left the country again to celebrate our second anniversary. Living in Seattle makes getting out of the country dead simple; we just hopped a ferry to Victoria for a couple of days. We spent a night at Sooke Harbour House, and had a wonderful anniversary dinner watching the sun set over the Olympics. We joked after that trip that we would leave the country for each of our anniversaries, but we haven’t managed to do that again… yet.
Anniversary #3 found me at a new job, with too much work and no vacation time. So Paul and I played tourist for an evening at one of Seattle’s best-known tourist attractions, Pike Place Market. We had dinner at Place Pigalle, spent the night at the Inn at the Market, and wandered around the market the next morning as it awoke.
On our fourth anniversary, we travelled far enough away from home to get out of the country, but, given the direction of our flight, we ended up in Boston. (We were on the way to my 20th college reunion in Providence.) Paul and I both have lived in Boston, and both love it, but we hadn’t been back in quite a while. We stayed in a small Back Bay hotel, a block from H.H. Richardon’s magnificent Trinity Church (which is near the top of my favorite buildings list). Dinner was at Casa Romero, a lovely, romantic Mexican (yes, Mexican) restaurant. Really nice interior Mexican food, and a fine margarita. In Boston. Go figure.
Last year, our (fifth) anniversary fell on Memorial Day Weekend. We chose May 23 for our wedding because it was the Saturday of Memorial Day Weekend in 1998; having our wedding and some future anniversaries on 3-day weekends seemed like a nice idea. However, if you live in Seattle, and are active in the folk music and dance community, the place to be for Memorial Day Weekend is the Northwest Folklife Festival. If you want to celebrate your anniversary dancing/performing/hanging out at a 4-day party with over 200,000 people, Folklife’s the place for you. Paul and I want something a little more intimate, at least for an evening. So last year, we skipped out on Folklife, and had a fabulous 3-hour dinner at Le Gourmand in Ballard. Glorious food, with perhaps the best sauces I have ever eaten.
Needless to say, this year was a little different. Neither travel nor food figured in our celebration. We were at home, and had a quiet Sunday morning in bed with the New York Times. For an anniversary treat, Paul made a mocha for me, rather than the usual latte. (OK, so that’s a little bit of food, but the only reason that it’s important is that Paul made it for me.) I had a small anniversary present for Paul; the cats loved the ribbons. He gave me a beautiful card; the enclosed letter made me cry… which made him cry. We talked about how this was not at all what we’d expected from this year, and that we are so glad that Paul’s still here, and that we are together. It was a lovely morning, a celebration of the small, everyday pleasures and extraordinary experiences that we have shared.
This afternoon, our friend Bruce called to wish us a happy anniversary. He noted that we’ve been really testing out the whole “for better, for worse, in sickness and in health” thing. He’s certainly right about that. So let’s just put a big check in the “in sickness” box on the marriage to do list, and go on to something else for a while.
And next year, watch out. We’re due for quite a splash out on our anniversary.
Sasha has a new imaginary friend. They’ve been playing hide and seek, with Sasha seeking. That’s the best explanation I can come up with for his behavior this morning.
Sasha looked for his imaginary friend all over the upstairs of our house. He looked in every closet (including the mysterious closet, which, thanks to some tidying, now has an open door policy). He looked on top of, under the covers of, and under both beds. He did a thorough search of the bathroom; he looked behind the toilet, in the bathtub, even up into the tub faucet. (His imaginary friend must be small.) He tried to get into places where only an imaginary friend could go (inside the walls, for instance). All the while, he made little “where are you?” sounds.
I think his search was eventually successful, though I don’t know for sure. At any rate, the little seeking sounds eventually stopped. However, he seemed pretty worn out from it all, and this afternoon retired to the stack of t-shirts on a shelf in Paul’s closet – until today Sergei’s secret domain – for a long nap.
Speaking of Sergei, he just came into my office to complain that I never write about his very interesting pursuits. He’s arching his back, and saying, “me me me now.” He is right on both counts; I haven’t written much about him, and he has some great stories that really should be told. I also haven’t given him his bedtime snack, so maybe he’s just hungry. I’ll take care of the snack first, and if that’s not what he wants, I’ll come back and write more tonight…
Yesterday we went for our first appointment at Rehabilitation Therapy. We met with a woman who seemed to know her stuff, and finally got some useful information about things we could do to help heal faster and better. She gave us some techniques for breaking up “adhesions” along the suture scar lines, which will make them lie flatter and look better. This will particularly help in the part of the “paramecium” which had a very wrinkled up look after a suture took a long time dissolving.
She also gave us some gentle massage techniques designed to promote movement through what remains of my lymph system, and so, presumably, reduce the remaining swelling. Since they took out nodes in my neck, and I lost nodes in my armpit in the lymphoma war, I need anything I can get to help my lymph drainage in that part of my body.
Already, after yesterday and today of working on the scar and drainage, the lumpiness under my chin seems noticeably improved. It’s hard to express how excited I am by this.
I also got some stretches to restore range of motion in my neck that has been lost as a result of muscles tightening up through disuse following the surgery. That may also help with supporting my swallowing.
Today was extremely productive, which was encouraging as well. I was up early to help jump-start Kimberly’s car so we could drive it to the shop. (Dead alternator.) The feeding spirits were kind to me today, and I managed to get my target calories with only the mildest discomfort, easily coped with by lying down for 20-30 minutes. So I was able to be busy all day. I could do laundry, clean litterboxes, tidy my bedroom closet and knock off other life maintenance chores.
It’s ridiculous how happy it made me to be doing those mundane things. Having the energy to be making my life better, and not being curled up cramping, in bare survival mode, is such a change from the way things have been lately. I was feeling like myself again.
I’m hoping that the improvement in feeding may be more than luck. I’ve again started taking some Zantac that they’d prescribed when I left the hospital. We’ll see over the next few days if I continue to have good days. (The Zantac was intended to deal with reflux, but maybe it’s helping even when I’m not experiencing reflux. Here’s hoping.)
OK, time to go do my newly assigned stretching exercises…