Less sluggish

The wound ostomy nurse I saw at SCCA is terrific. She regularly communicates with me via email. Turns out I was having diarrhea. Seems like I should have known that but since my bodily function is disconnected, I wasn't getting the usual signals.

Some imodium and a few cups of tea and I am feeling better. This whole thing is still a learning process, or at least that's what I've been told.

For now, I'm ready for a walk and go out and do a few errands!

I was a slug yesterday

Not sure why, but my energy level has been lower. Last time I took a walk I was light-headed so I'm now going to take two shorter walks. Some of it could be due to a hydration level. I'm not supposed to drink anything while eating and then take liquids in slowly. I've found a re-hydration recipe at WebMD. Not the best tasting so maybe I'll play with it a little. In a sense, I feel that my recovery has slowed a little bit, but maybe this is natural.

But I have now finished five books and am happily watching the US Open on ESPN3. Roger is due on court soon! Things aren't that bad!

Two weeks later, the pathology report

Good news! Just got a call from the surgeon and the pathology report shows great results!

There was no sign of cancer in any of the 28 lymph nodes removed and he removed all of the tumor that was left after the radiation/chemo worked it's magic!

So, I have a good future ahead of me! Celebrate!

Me and my bag, and I don't mean Vuitton

First, something nice. The view of Lake Union from the 4th floor of SCCA.

So, on Monday I met with a wound ostomy nurse to see how things were going. The location of the stoma is not where initially planned, but just to the right of my belly button. This makes it very difficult to wear anything except elastic waist pants! Also, because it's located right were my waist bends, I couldn't get a good seal which led to leaking. I can't tell you how gross that has been!
8/22 - (I talked to the surgeon about this and he chose to use an existing incision rather than make a new one since the ostomy bag is temporary. More inconvenience for me but one less incision to weaken my abdominal wall.)

This new wound ostomy nurse was great. I have a new set up with a more rigid skin barrier, plastic wings to adhere over my belly button and irritated skin and a belt to wear at all times to keep things in place. I remember in the '70s Helmut Newton did a series of fashion shoots with models wearing various medical devices. I couldn't find any of those images, but I did find this by an artist Olga Noronha.

Imagine what I'll look like when I start my chemo – wearing a bag, a belt, a port and a fanny pack with a pump! All I'll need is a pair of killer high heels!

The nurse thought I had a nice stoma - really? I've decided it's like the bubbling mud pots I've seen in Lassen National Park, at the end of Bumpass Hell trail (how could you not love that name!). Yep, my little stink pot.

Flowers from my Nordies!

A beautiful bouquet arrived this afternoon!

Thank you again for all of your support!

One week later, I'm back!

Thanks to my husband, David, for taking over for me while I was recovering in the hospital. It was one week ago I had my surgery.

First of all, I am touched and honored by all of the visits, flowers, gifts, cards, calls, emails and well wishes! I am truly lucky to have such friendships and support! Thank you! Many of the care givers commented that they liked coming into my room because it smelled like flowers. (We don't want to think of what hospital rooms normally smell like!)

Every day I received encouragement from the staff with how well I was doing. I moved quickly from sitting to walking, from no liquids, to clear liquids to food. By the morning I was slated to be discharged, I was practically skipping around the halls, my medical tethers were disappearing one by one and I got to take a shower and wash my hair!  It is the simple things in life.

They removed the epidural and started me on oral pain relief. Then came removal of the JP drain. OH. MY. GOD! I can't remember when I've felt such pain! The hunky, young doctor from Texas told me it would hurt (sadist) and he was right! I felt like one of Jack the Ripper's victims!

It was ten-steps backwards after that, but I managed to still get released.

Since then, getting the pain under control has been iffy, until today. Here is what I am taking:

• Acetaminophen - 2 caplets (1000mg) every 6 hours up to 6 caplets a day.

• Ibuprofen - One tablet (800mg) every 8 hours.

• Hydromorphone (generic Dilaudid) - 1 or 2 tablets as needed.

 I've learned to set up a schedule for each medication and keep taking the hydromorphone regularly. Sleep has been difficult since I need to sleep mostly on my back. But I am working on being able to sleep slightly on my side.

The day before I got on the treadmill twice, yesterday I slept most of the time. Today I read most of the time. I finished The Nanny Diaries while in the hospital and Where'd You Go Burnadette yesterday. Both were fun, easy reads. Now I'm reading Andre Agassi's biography, Open.

Yesterday I also got a home visit by a nurse as part of my care. We went over emptying and replacing my Ileostomy bag. It's not pleasant, I don't like it, but I can handle it – so far.

Oh, and for good measure, I get to inject myself each night with a shot of Enoxaparin Sodium - a blood thinner - in my stomach area.

Thanks again for all of your support, friendship, positive thoughts and prayers!

Dorothy is Home!

Yup, she's home and happy to be here. Daphne was ecstatic, talking to her mommy non-stop and wanting to be held.

I baked a loaf of bread for the nursing staff. It was still very hot from the oven when I dropped it off.

Sunday's update

David here again. But not for long. Dorothy may be sprung tomorrow, Monday. No idea about time if that happens.

I will see her at about noon, for a visit with the ostemy nurse. A teaching session, if you will.

When I went by to visit this afternoon, found out that Bronsa had visited, ran into Chuck and Barb as they were leaving, and Wendy and Michelle were in the room when I arrived. I may missed names of other visitors.

But I did get a whole lotta grief about posting my dinner last night when all Dorothy got was broth. Well, so it goes. And the bread is tasty and she can eat it when she gets home.

Tonight, she had real food. She had an open-face turkey sandwich with gravy, mashed potatoes, and haricots verts, with apple pie for dessert. I have to say, since she shared some bites, it was pretty good. The beans, especially, were perfectly cooked, as in to say they were crunchy, seasoned, and buttery. The turkey and gravy was real. Not sure about the potatoes, but they tasted OK. The pie was definitely not home made.

I really want her home... I want to be able to roll over in the morning, every day for the rest of my life, and say, "Good morning, Mrs. Darrow" in person.

Dorothy's diet, post-surgery

It's not pretty, what I have to say. Dorothy will be on a restricted diet while she has her ostomy bag. There's no polite way to say it. It is the shits.

So, knowing she can eat white bread, not whole wheat bread like we normally do, I made a white bread loaf tonight, using the starter I've been culturing and making loaves from, for about 6 months. I really can't wait for her to come home...

Saturday update - she's doing really well

David here again.

The last evening Dorothy was home, before all the hospital stuff, we were out on our deck. And she saw the balloons.  When we first moved into the house, we'd look for them every night, and take pictures. We have literally hundreds of pictures of balloons with the cascades in the background. And for her birthday one year, we went up in one, out of Woodinville. Here's her last picture the evening before all heck happens...

I also mentioned in an earlier post the thunder, lightning, and rain (and petrichor). From the Seattle Times:

More beauty here at the Seattle Times.

Saturday Dorothy made great strides in her recovery. She's "oot n aboot" the wing she is staying on, getting much walking time down. And she's had visitors. Yesterday, Stephanie (who I've not met yet, but is a kindred soul in cancer town), and today Kaji, Michelle, Stanley and Fumiko, Wendy, and myself. Please, don't hesitate, wondering about timing. At the hospital, visiting time is all the time, and the nurses will do their stuff visitors or not.

Just go.

When I saw her this evening, her room was redolent of flowers. I mean, really? Flowers? Why not BACON?

Oh, OK, she can't eat...

And the princess is doing really well. She had BROTH today! How awesome is that? And tonight, while I was there, she ordered dinner. More BROTH! Oh my!

Here she is. You can see she's looking quite healthy.

So, I left her to her broth, and movies on TV (Skyfall, and some recent Snow White one). I went to Central Market, and selected what I would have for dinner. No broth...

Yes, double cut veal chop with picatta sauce, a hash of fresh "just harvested" potatoes with some onion and Anaheim chile, and of course, corn on the cob.

Yum.

Petrichor

The Smell of Rain After a Dry Spell

OK, so, as I was working on the last post, I knew there was a forecast of possible thunderstorms on Saturday, mostly later. But, as I was editing, I smelled rain.

First, it hasn't rained much in Seattle this summer. July was one of the driest and hottest on record. We had a touch of rain last week, but not enough to actually water anything.

And then...

I smell rain. I hear rain soon after. The smell has been named "petrichor." From Cliff Mass, "A wonderful name combining two Greek roots:  petra (stone) and ichor (the blood of the gods in Greek mythology)."

And I smelled it, and I hear the rain, and I hear thunder in the distance. Hurray!

Yes I know, Seattle is supposed to be rainy all the time, but it's not. In the summer, particularly the second half of July to end of September, we don't have rain much at all. People here, well locals, don't even try to water their lawns. What we do is let them go dry, die back, go into hibernation.

We can always tell the foreigner from the East who is out there trying to keep the grass alive against all odds. (We are essentially on glacial till, sand if you will. There's no soil in most of Seattle. But down in the river valleys, there is probably the most fertile farmland in the temperate world, and it is fast disappearing under industrial parks and condo complexes.)

So as I type, I feel a very humid breeze filled with the smell of rain. I am happy for the rain. I hope that the predictions of lightning in Eastern Washington with the possibility of "lightning without rain" don't come true. The forest on the other side of the Cascades is DRY.

My Princess

David here again.

Did I mention check in was at 5:15AM? Then you wait, and wait, and wait, finally get escorted to a room where the latest in backless gowns awaits... Then you wait, and wait, get poked with needles for IVs, and wait, and wait... Did I mention you spend a lot of time waiting?

Dorothy got IV lines in both hands, and also got an epidural line placed in her back - so that pain medication can be automatically administered to her spine during her stay.

Needless to say, Dorothy took all this in stride, being the most patient of patients. With humor and wit, grace and decorum, we waited until she was wheeled into surgery.

Ah, my princess

I spent the night with her on a cot. I'd forgotten how often a night's sleep is interrupted in a hospital. Every few hours, someone is in the room checking vitals, checking IVs, checking pee and poo production. And just when you're really asleep, the IV bag is empty and an alarm goes off... I left about 5:30AM, and went to Voulas Offshore Cafe. The guys are great, they're into cars, and I was driving Maude.

Today, Friday, was her first full day of recovery. She tells me she got up and walked around the floor of her wing three times, spent time sitting in a real chair, and really, is making great progress. The nurses are amazed at her quick healing and recovery (although I think they say that to everyone to encourage compliance).

I went in this evening and watched Food Network with her - torture for sure! She may, that is may, get broth and Jello tomorrow. Yum!

David here with a comment

OK, so this is David speaking. It's about 10:30 PM, and Dorothy and I are supposed to show up for check in at the hospital at 5:15 AM. Of course, I am taking her in the Rolls. Scroll down, you'll see.

She went through "heck" today with her "cleanse;" clear liquids, no food…

So, what did I do? I had a delicious bacon burger for lunch (the bacon was my home cured, apple-wood smoked bacon, and mighty aromatic in that frying pan), then made a pork piccata with a Niçoise salad on the side for dinner. It was delicious. And aromatic. Oh, and because she couldn't have wine, I had hers. Yum. She hated me for it.  :-)

I will update this page sometime tomorrow, or maybe the next day with her status. I know she's one tough girl, so I have nothing but expectations that she will come through the surgery just fine. Her challenge will be to not rip the throats out of the hospital staff when they tell her she can't be released to play tennis at 6:00PM Thursday, after surgery… She's amazingly tough.

I pity them.

D Day

Check in at 5:15 tomorrow morning. Wish me luck!

Prep day, aka Cleanse day

Here is the accouterments that I'll be using for prepping for my surgical experience (that is the term they use in the handouts).

For five days before today, I was drinking three containers of Nestle's Impact Advanced Recovery nutrition drink.  I really don't like taking this stuff as it's a bunch of chemicals and calories. Each container contains 340 calories, times three that's almost an extra 1,000 calories a day! And  your supposed to ingest this along with your regular diet. Fattening me up for the kill? The cloying sweet taste of condensed milk and chocolate does not cover up the fish oil that has been added. I suppose this product would help if I only ate fast/processed food, drank soda all day, didn't exercise and smoked, but none of these apply to me.

Today will be a clear liquid only diet, just like in some of those fancy weight loss spas. Perhaps I'll even have time for an herbal facial in between trips to the necessary (as my mom calls it).

First thing, I mix pouch A and pouch B of MoviPrep (Who's the idiot in marketing that came up with that name? Further more, they have a link on their web site for a MoviMent. Really?) with a liter of water. Starting at 8AM I'm to drink 8oz of the solution every 15 minutes, consuming all of it within an hour. In less than an hour things begin to work, and I mean really work! Afterwards, I'm supposed to drink 16oz of one of the clear liquids of choice (no, not vodka). Then at 10AM I start the process all over again!

Then at 1PM, 3PM and 11PM I take 1 gram each of Neomycin and Metronidazole.

Then tonight, I get to shower with Dyna-Hex 4, and go to bed on clean sheets. Then tomorrow I shower with the Dyna-Hex 4 again and head to the hospital in clean clothes.

After more than two months of agonizing over my upcoming procedures, I have reached a point of resigned acceptance. Going forward, what I will be experiencing will be painful, frustrating, repulsive and undignified, but at least I won't have the constant anxiety I've been feeling. I have a job to get through things, one day at a time.

David, my husband, will be my guest blogger when I can't do it myself.

Thanks for reading!

Last supper

Last night was the only time in a long time to come where I could eat what I want. Since I'll be on a low-residue fiber diet for at least six weeks, I went with as much pulp, seeds and fiber as I could find in our refrigerator.

So we started with screwdrivers with fresh Valencia orange juice.

Then, figs stuffed with goat cheese, wrapped in prosciutto, broiled and served with some fig balsamic vinegar from the olive oil place in Milwaukee.

Then a big salad with lots of raw veggies and seared tuna, kind of à la Niçoise.

 Now, on to my prep day.

Stoma stigmata

To add insult to injury, I mark the spot where my stoma will be with a surgical marker. It's a daily reminder of what is to come. Sometimes I do graffiti and write things like, "I hate you" around it. Then I did this:

Only the stoma mark remains, I'm not sure the surgeon would find humor in this.

We'll always have Lummi!

Our wedding was not only auspicious for us but also for England and Seattle's nighttime sky.

The next day we headed to Lummi to spend three nights at Willows Inn. They were having a special event, their second annual First Harvest dinner where five notable chefs from around the world forage and fish with Blane. Here are some images from the Facebook page. Recapping the meals will need to be a separate post but let me tell you it was incredible!

Here is Maude's first voyage on a ferry:

There's an tragic connection between the Spirit of Ecstasy and ships. Here, she looks like the ferry's figurehead!

We stayed in the cottage which is on a hillside behind the inn. When we arrived, we found robes and totes from the Willows Inn and a bottle of wine from David's co-workers in Thousand Oaks. We'll open it on our first anniversary - better than year old cake!

Here are some images of the cottage.

In the image below you can see the smoke from the alder wood fire the staff starts first thing in the morning

A water feature near the cottage.

On the second morning we awoke to the sound of fog signals. I love that sound!

Sunsets are always beautiful and I awoke one night to see the moon in the trees.

On the second day we hiked in Baker's Preserve. It was quite a strenuous hike in the beginning but we were rewarded with wonderful views.

There are wonderful views of Mount Baker and Hale Passage from the island.

On the way home, we drove down Chuckanut Drive and stopped at Taylor Shellfish for some oysters and crab. I garnished the oysters with oregano blossoms, inspired by our meals at Willows Inn.

When we got home there was a surprise waiting for us!

 All in all, a wonderful honeymoon and birthday trip!