Seven…

…is the number of months since Paul’s surgery. Here’s where we are today:

Psychological news: I am pleased to report that I am in a better place psychologically than at this time last month. I attribute that at least in part to Dr. F, the new psychological professional in my life. Paul says that he’s not sure whether he’s feeling better than he was a month ago, but I think that I see some improvement in his mood, and he has told me that he feels better after sessions with Susan, his therapist.

Physical news: The “pouch” of swelling on Paul’s jaw has definitely changed; it is softer, smaller, and almost entirely below his jawline. Some of the reduction in swelling seems be a result of the drainage following Paul’s Home Surgery last weekend. A large part of the “paramecium” on Paul’s arm is almost the same color as the adjacent skin. Physical therapy continues to loosen scar adhesions in his neck and arm, and increase his flexibility and range of motion.

Swallowing news: As of 10:00 pm, Paul has ingested approximately 550 calories by mouth today. He has eaten cashews, Cheerios, sunflower seeds and ice cream. No, it’s not a complete, well-balanced diet, but we’re going for whatever works right now. That’s 1/4 of the calories that he needs each day, so he still has a ways to go, but it is progress. It’s still a very slow process, and is not eating and swallowing as you and I know it. Still, the less time he has to spend hooked up to {whirr-click-click} the pump, the better.

Day-to-day news: Today Paul and I went to the “See Center,” the cutesy name for Group Health’s Optometry Clinic, to pick out new glasses for Paul. He tried a number of frames, which ranged from bad to giggle-inducing. (I will confess that I selected the frames that made me laugh.) We eventually managed to find a pair that work nicely with the shape of his eyes and eyebrows and the planes of his face. They’ll be ready next week; I’ll post photos then.

Paul has a busy day tomorrow: a CAT scan (prior to his next follow-up appointment with Dr. Futran on Thursday), an appointment with his physical therapist, and an appointment with his emotional therapist. And me? I’ll just be going to work.

Not gruesome, curious

Gruesome was the word that Paul used. No, not to describe the Solo Home Surgery he performed last Friday night. Gruesome is the word that my loving husband used to refer to me, when we talked about the “procedure” on the phone last weekend.

I called to see how he was feeling, and he told me what he’d done. I’d thought of suggesting that he or I lance the soft, apparently-fluid-filled area before I left town, but I didn’t think he’d be inclined to do so. I told him that I wished I’d been there when he did it. Laughing, he said, “You’re a strange and unusual woman, Kimberly.” Then I suggested that he write a blog post about it. He was initially reluctant. “Not everyone is as gruesome as you are, sweetie.” Gruesome? Not exactly the word I would’ve chosen to describe my fascination with things medical, my desire to see what happened. Weird, atypical, odd… I’ll cop to any of those.

However, the word I would choose to describe myself is curious. Among the synonyms for “curious” in my handy online thesaurus are: inquisitive, interested, unexpected, unconventional. Being “curious” has served me well throughout this entire medical adventure. Having an interest in medical science, and what I gather to be an unusual lack of squeamishness, made it possible for me to absorb lots of information about Paul’s disease and its treatment, and to tend to his surgical wounds.

When I left town last Friday morning, Paul’s jaw was swollen, red and puffy. When I returned home Monday evening, there was only a small opening in the skin where he had drained the abcess, and a tiny bit of staple on the bathroom shelf. Now don’t get me wrong; I’m really glad that he’s all better, and that the staple is out, rather than still in. I just wanted it to be, as Laura Mé suggested, “Pas de Deux Home Surgery”. Is that really so strange?

Medical update

Apologies for the delay in getting this posted. I was busy having a wild bachelor weekend. 😉

Thursday, when I went to get my swelling looked at by a trained medical professional, I was showing odd, lumpy swelling in an area that had previously just had a broader, even swollen quality, and some skin irritation. That morning the skin had started to feel warmer than normal. I really wanted some trained person to take a look, feel around, and tell me that the odd lumpy bit was not a (minor organ chord) Lumpy Bit, in the sense of the internal lumpy bit that started this adventure. Carol, the nurse practioner, told me it was probably an infection of some kind, which sometimes happens, and what I was experiencing didn’t seem like the way most recurrences presented. I was happy to agree, take the antibiotic prescription, and go home.

Friday, the swelling had gotten worse, and the skin had gotten quite red over a larger area. I felt like I was wearing a too-tight turtleneck, even though I was in a t-shirt. By the middle of the evening, I got tired of waiting for the antibiotic to kick in, and of poking at the oddly soft spot in the center of the lumpy bit. After deciding that the soft spot just felt like skin stretched over some fluidy something, I did what any self-respecting lonely and bored bachelor would do. I performed a bit of Solo Home Surgery.

In this case, it was really just a matter of poking my skin with a sterilized pin, which immediately freed a gusher of white pus to flow. I had expected such a possibility, so I was prepared. What was surprising, however, was to look at the tissue after I pulled it away from my face. It held a small piece of metal, about 2 millimeters long, by about .5 mm wide, which I suspect is a fragment of a surgical staple, or some such.

My theory is that it had been captured, and perhaps encapsulated, in scar tissue for months, and had recently come into contact with lymph and happy elements necessary for bacterial-abscess-making, perhaps as a result of the physical therapy I’ve been doing to break up adhesions, and/or shifting and healing lymph passages.

Anyway, after about 36 hours of continued lymph fluid drainage, and more antibiotics, the redness is gone, the lumpy bit is gone, and I’m back to my “normal” swollen area below my jawbone. That “normal” swelling may even be slightly improved, it’s hard to tell.

Weekend plans

Tomorrow morning I’m getting on a plane to Oakland. Tomorrow afternoon and Monday I’ll be working at the “home office” of my firm. I’ll get to talk with the rest of my project team face to face! And meet the structural engineer! (He works for a firm with whom I worked in the bay area when we lived there… small world.) I think will be more productive and satisfying than communicating via email and phone calls.

On Saturday evening, I’ll be one of the musicians for a 120th birthday dance. Two of our friends from the Bay Area dance community are turning 60, and they’re throwing a big bash for themselves, with lots of English Country dancing. So I get to hang out and eat and dance and play music with lots of friends. The rest of the weekend, I’m going to be a social butterfly… if “butterfly” can be used to describe someone driving all over a large metropolitan area to see as many friends as possible in a weekend.

I wish Paul was going to be with me for the weekend, but he’s going to be at home. He doesn’t feel like dealing with traveling yet, with the feeding tube and all. AND, unfortunately particularly in its timing, it seems that he has developed some sort of infection under the incision along his jawline. He has some new and different swelling, which is red, warm and tender to the touch. He saw Carol (the nurse practicioner in Dr. Futran’s office) at UWMC today; she said it looks/feels like an infection, and gave him some antibiotics. I’m not thrilled about leaving town with Paul sick in any way, but he’s telling me that I should go. I’m going to be checking in on him regularly. If you find yourself with a little free time (and it’s not an ungodly hour in Seattle), you might give him a call. I would certainly appreciate it.

So, I’ve been thinking a lot about this whole posting/comments thing. It’s complicated. See, when I post something heartfelt, but hard, and get silence, and then I post something more positive, and get lots of feedback, I feel like I’m being trained to keep my less-pretty feelings to myself. And I’m not interested in doing that.

Not that I think y’all are aiming to have that effect, either. After thinking about it, I’m guessing that part of you are getting hung up on the helplessness problem. You read something sad, and you want to help, but you don’t know how, sometimes because there really isn’t anything you can DO, and you don’t know what to say, because “Gee, that sucks” doesn’t seem appropriate.

The point is, it’s important, and it helps enormously, to just be heard. Sometimes, it’s just about the expression, and the reception. And honestly, there are going to be times when it’s altogether appropriate for me to be feeling pretty blue, and frustrated. Hiding those feelings, from myself, or you, would be dishonest, as would rushing through them, or cheering myself out of them. So just listen.

Dear [your name here],

Yesterday, my wonderful and very perceptive sister left this comment on Paul’s post from September 7:

I’ve been noticing a pattern, and I’m wondering if it’s frustrating for you. At various times throughout this ordeal, you’ve described the physical and emotional struggles you’re facing, and it seems that few of us have responded (at least not publicly). And then you write a snippet of positive news (which is wonderful, and of course is what we all hope to hear), and you get encouragement and cheers. When you were first diagnosed, Kimberly wrote quite poignantly about how those of us on the periphery could lend our help. Now that you’re in a different, but still very difficult phase, I’m wondering what we can do now to support the two of you. Any requests or instructions for your devoted fans?

Melanie is not the only one who has noticed this pattern, and “frustrated” only begins to describe my reaction to it. I recognize that it is easier to respond enthusiastically to good news, or to posts about aspects of our lives other than Paul’s illness and struggles with recuperation. And don’t get me wrong, we love getting comments about anything we write. However, it is when we write about our ongoing struggles that we most need to hear from you. When Paul writes something that is filled with pain and frustration, and even some despair, and there is no response, I feel sad, and hurt, and sometimes angry.

I imagine sometimes that you read this blog as if it were the “friends” section of your daily paper. Flip to the page, read today’s news (perhaps laughing or crying or stopping to think), then go on to the next section. News flash: this is not reporting. These are our letters to you. I like to think that, if our posts from the six month anniversary of Paul’s surgery had arrived in your email inbox, we would have gotten some response. In the post to which Melanie referred, I started by writing, “Stay in touch,” and closed with, “We will let you know if you can ‘do something’ in particular to make our lives a little easier; in the meantime, ‘standing there’ with us will go a long way in helping us get through this.” Those words are just as true now as they were seven months ago. Please comment, or write, or call. Let us know you’re still here with us.

It’s a beautiful Sunday in Seattle, and I have lots of things to do. I hope you’re having a great weekend.

Love,

Kimberly

p.s. I received email recently from someone who worried that her words of support seemed cliched. I’ve been there, too; if that’s where you are, I can only suggest that you just get over it. “I’m thinking about you” and “I’m sorry to hear that you’re struggling” are perfectly good sentiments. Feel free to use them, or any of the other tried and true phrases.

Tailwind

Yesterday I managed to eat with relative ease a 1/2 cup of very soupy rice, and later, a similar portion of delicious and thick split-pea soup Kimberly made for me. Food is good.

Paul Update

So, by now you must be thinking, why, he’s forgotten all about us. He goes and starts up a shiny new blog, and leaves us, his loyal readers at his original blog to drift, with only stories of jam and medical billing for comfort. How is Paul? What is happening? Enquiring minds, and all that.

Well, it is true that I’ve been spending a lot of time on my other blog, Ratiocination. The campaign and the political news have sucked me in. And, frankly, it’s easier to wail about the broken state of our political system than to focus too hard or too long on how I’m doing.

I’d be more inclined to post here if I felt like I had news. How am I? Sadly, a lot like I’ve been for several weeks. I’ve been working really hard to take in nourishment by mouth every day, but it isn’t like “eating”. Rice really only works if the grains are really soft and moist, or if they are smooshed up into a sort of rice-paste or gruel. It’s better than nothing, but it’s not noticeably any better today than it was a couple of weeks ago.

We try different foods, different consistencies. Mostly they fail. With each failure, I am brought to the edge of tears. Sometimes beyond the edge. Potatoes, mashed, no. Potatoes, fried, cubed, no. Potatoes, fried, shredded, no. Eggs, scrambled, no. French Toast, no. Plain, well-buttered toast, no. Eggs, fried, just bits of the yellow. And so on. Cheerios, dry, a few at a time, are a reliable yes, if I don’t go too fast. But they are too high in sodium for me to eat a lot of. Yesterday, I found I could manage old, stale dry-roasted unsalted peanuts that crunch into minute bits, though peanut dust gets into parts of my throat that make me cough. Lots of calories in peanuts, which is good right now.

This week, we’ll be working on smoothies, oatmeal, and other gruels.

I’m desperate to get enough nourishment by mouth that I can get this damn tube out. With the extremely buttery rice, and Cheerios, I’ve been able to at least cut down on the number of calories I need down the tube each day. It’s something, but not much.

In the last day or so, the variable lymph swelling around my jaw has shifted, somehow, so that it is in a new spot, more beneath my jaw. It’s not better, but it makes my face look lopsided in a new way, and when it is at its most swollen, it pulls the skin in newly uncomfortable ways. Variety is the spice of life. Heh.

I go to physical therapy. I go to emotional therapy. I hook up my feeding apparatus, I pump food, I unhook my feeding apparatus. I clean same. Every few days, I get out a new set. Lather, rinse, repeat.

When I was on my cross-country bike tour, things changed when we got to Nebraska. The climate suddenly got drier, meaning that if we pulled off the paved road, just for a second, we picked up dozens of thorns, puncturing our tires. (We all had slow leaks in all of our spares by the time we left the state.) The terrain changed slightly, becoming a long series of slight, but draining hills, followed by descents too shallow to provide momentum up the next climb. The view didn’t change. The people in the towns were unfriendly, and seldom spoke. It was hot, and the wind always blew from the wrong direction. Imagine a place that would make you glad to see the Rocky Mountains ahead of you when you are on a bicycle.

I’m in Nebraska again.

Kimberly just walked in with a trial smoothie. It tastes good. It’s not thick enough to work easily, but I might be able to get some of it down, if I’m careful not to aspirate. The rest can just go into my feedbag. I’m going to go work on that now.

Yummy goodness in glass

I’ve taken all of my preserves out of boxes, and put them on shelves in the cellar. Here’s the documentary photo; click on it for a larger view. In reality, the basement room that I call the cellar is lit with one bare 75 watt bulb; the flash on the camera makes the whole scene appear much brighter than it is. However, the colors of the fruit really are that rich and beautiful. Looking at the display, I must admit that I’m proud of having developed some mastery of at least one of the traditional domestic arts.

Since the labels are not visible, I’ll identify the subjects, from left to right:

Top shelf: brandied apricot preserves (2nd from left), and odds and ends of last year’s peaches, pears, cherries, and blackberries.

Middle shelf: peach melba jam, applesauce, peach preserves w/ orange liqueur, cherries in almond syrup.

Bottom shelf: blueberry chutney (one jar has your name on it, Norman), brandied peach preserves, cherry chutney.

Oh, and the bottles that you see at the right edge of the photo are our small collection of ports and dessert wines… more fruit, sugar and alcohol, just in different proportions. Yum.

A is for applesauce – now with photo!

When my parents, sister Melanie and nephews Max and Reed were in town in August, we went to South 47 Farm, a U-pick farm in the Sammamish Valley near Woodinville. Max was excited when he heard that we were going to a farm, and asked what sort of animals would be there. (He’s a big fan of “Old MacDonald,” so to his mind, “farm” means animals.) Melanie explained that this farm had plants, not animals, and that fruits and vegetables grew on the plants. I guess that she said something about the produce being “like we get at the grocery store,” because by the time we went to the farm, Max was calling it the “grocery farm.”

We piled into the rented minivan in Seattle, and headed across Lake Washington, and out to the farm. (During this drive, I sang the ZYX song many times, and Max regaled me with his newly minted Texas variation on the ABC song.) We arrived in Woodinville to discover that it was 10-15 degrees warmer there than in Seattle; in fact, it was hot, and very sunny. This was not going to be a long, leisurely U-pick experience.

We decided that we would pick some apples and blackberries; apples in particular seemed like a good choice for little boy hands. Mom stayed with Reed in the shade of the van while Max, Melanie, Dad and I picked apples. Williams Pride apples are fairly small, with a very deep, sometimes purplish, red skin. The trees in this orchard are young, and not yet very full, which made the dark red apples very easy to see and to pick. They weren’t, however, within reach of 3-year-old hands, so Melanie held Max up to pick the fruit. Because Max thought this was so much fun, and Dad and I were picking as well, we picked almost 10 pounds of apples, not including the couple that we ate while picking.

After picking apples, Max was done. Plants – even those with “groceries” on them – don’t hold a 3-year-old’s attention for very long. Melanie and I made short work of filling a couple of baskets (and our mouths) with huge, juicy blackberries; thornless is definitely the way to go. And then we headed back to the cool of Seattle.

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Skip forward three weeks: there was time today for some more canning, and the apples from our U-pick adventure became applesauce.

Small apples take longer per pound to prepare than their larger siblings; I listened to the entire second hour of the new public radio show Weekend America while coring, peeling and chopping. Because I wanted the sauce to have some of the color of the apple skins, I simmered the skins in apple cider while I finished the chopping; this produced a lovely, cranberry-colored cider. Into the pot went the apples, the red cider (augmented with a little blackberry-infused cider I had on hand), and lemon juice. After the apples had cooked for half an hour, I added honey, cinnamon and nutmeg. Fifteen minutes on simmer and a tiny bit of sugar later, the applesauce was ready to go into jars, and into the water bath. I sat in my kitchen, canner boiling on the stove, listening to Garrison Keillor tell stories about the Minnesota State Fair on Prairie Home Companion. It felt a bit like a different time.

There are now five pints of pale pink applesauce on our kitchen counter. Tomorrow, they will go into the basement to join the other fruits of the summer. However, this October, when Paul and I go to Houston, one of those jars will be going to Max. He picked those apples. It’s only fair that he get some of the fruits of his labor.

Update: Here are the jars of applesauce, nestled between two varieties of peach preserves on a shelf in the cellar. Isn’t that color lovely?