Hope

con-cycloneMy sister has been staying with me the past ten days as I recover from surgery (three weeks ago). It’s been a really great time of visiting and she has leant her strength where I don’t have it. She has cleaned my house top to bottom (you should see her wield a Shark vacuum and all its attachments), done all the cooking and grocery shopping, AND cleared out the garden (no small task) of weeds. But mostly she has accompanied me on walks and in talks and watching fall come to the prairie.

She also accompanied me to my oncologist appointment on Tuesday. It was a roller coaster of a day.

I have been expecting to have two more rounds of chemotherapy– to get whatever is left– and from the time just before the surgery until this week I have been dreading it. But back at the cancer center having my port accessed by the wonderful nurse, filling her in on my surgery and experience with the nurse’s strike, and hearing how things work at CentraCare, which is a non-union shop with strong representation for the nurses, a lot of that dread melted away.

In the office visit, Dr. Ufearo was his usual inscrutable self while I was trying as I always am to cast whatever he said as best-news-ever. Mercy Hospital hadn’t sent the pathology report, but I had it with me. He reviewed it, listened to my chest, and examined my nicely healing incision. We had some of the blood work back but not the all-important CA-125. He explained that although it wan’t the best marker in some people, it seemed to go up and down for me in relation to the treatment (it had been at the very good number of 18.7 since June 1– below 35 is the goal). Now that we’d finished 18 weeks of chemotherapy and the surgery, we would watch that number when deciding what else to do.

Although he recognized the restaging of the cancer in surgery to IIIC, he emphasized that was the surgical diagnosis, different from the clinical diagnosis, which was and would remain stage IV because there was no doubt about those initial nodules and cancerous fluid in the lung. He’s a bit of a downer in that way. We left with the plan of returning in early November for a scan and to check the blood work again, and see at that point if more chemotherapy was necessary.

My sister was somewhat euphoric, although I wasn’t sure what to make of it. The word “remission” hadn’t been used, and chemo still hung out there for the next month’s assessment– but maybe a reprieve from that final round would be mine? It was the first time I thought about “official remission,” that time when we would just monitor, first every three months, then every six months, then yearly… starting that clock. I have a narrative in my head (a dangerous one, probably, given this disease) that goes: treatment, end of treatment, ten years, maybe more treatment. So far, especially with that restaging and the optimal debulking result, things seemed to be following that narrative really nicely.

Kathy and I celebrated with a trip to Kohl’s and then came home for my nap.

A call from Dr. Ufearo came in just as I was waking up about 2 p.m. The CA-125 came back and it was up to 193. A scary number for me– how had it risen so quickly? The last time we tested it was just August 7, before surgery. There would be more chemotherapy after all, and in two weeks, not a month.

I had not yet let my hopes get up too much, but still I had to talk myself back down– this was not a quick “return” of the cancer, because we had not finished this entire first regimen yet. I had not been in remission– this was all part of the original plan, and not actually different or more intensive than the usual plan for Stage IV ovarian cancer. It didn’t take away what everyone said was phenomenal results of the first 18 weeks of chemo or of the best-case result and enthusiasm of the surgeon about the surgery– the fact that she had “left nothing visible behind.” Praise God for my intact bowel and no nodules felt on my lungs (whatever might still be lurking there in the lining or fluid– fluid that had not been heard when Dr. Ufearo listened to my chest). Praise God for my intact liver and no complications or infections from surgery. And even Praise God for my CA-125, a marker in the blood that means we’ll be able to tell when more treatment is necessary.

http://blog.donnahoke.com/playwrights-and-the-state-of-perpetual-hope/

http://blog.donnahoke.com/playwrights-and-the-state-of-perpetual-hope/

It also set me to thinking about hope. My good, unmet, 7-year survivor friend Annette Collins wrote that I should try to live in the moment and one day at a time and try “to have zero expectations.” And in the tangle of myths the swirl around me, there is always Beth of Little Women— am I handling this like a person who has grit and will survive or the “good girl” who dies? Those are the narratives in my head.

How do we ride the razor’s edge of hope that is not calcified into expectation? Or how do we ride the roller coaster, the waves, the ups and downs, hoping/expecting and then just resetting ourselves for more battle when necessary?

mv5bnjq2nda3mdcxmf5bml5banbnxkftztgwmje5ntu0nze-_v1_Last night we watched one of my sister’s favorite movies: The Shawshank Redemption. Somehow I missed this movie in the 1990s and it kind of got away from me. It is a movie about hope. And resilience. Convict Andy Dufresne (Tim Robbins) preserves his “freedom” by not becoming a prisoner in his mind– he takes risks. He also applies himself, to build a library and get other reforms to the prison, by writing letters every week for years and years, even when he doesn’t get results. His hope doesn’t make him any less dogged in his efforts. Fellow inmate Ellis Boyd “Red” Redding (Morgan Freeman) tells him to give up hope, accept his fate, because it will make things easier in the long haul. Live without expectations, or maybe expect the worst, and live in spite of it. But to Andy, that sounds like dying, not living.

You have to carry your hope with you throughout the battle. Of course, I am so early in this particular war I am not close to giving up hope– but also it is challenges like these that make one think more closely about hope’s purpose and meaning.

Again, I have lessons to learn from Robby, the man I write to on death row in North Carolina. I have often wondered about his relationship to hope. He is particularly good at living in the moment, and in large part this is possible because he is dedicated to a few relationships in his world– his friend Timmy, and a poet named Edward. He shares my letters and my poetry with them, and sends me their greetings and news of their prayers for me. Of the hundreds (over a thousand?) saying prayers for me through prayer chains and groups and lists and choirs and congregations, these three hold a special place. (How can one not get expectations with thousands praying?? We claim total healing, however long it may take to kill all the cancer.)

I am lucky to have my sister here, and thankful every day for our relationship. It will be hard when she goes tomorrow. But next week Steve’s daughter Julia arrives, and always friends are near. My team is ready– Kevin to drive me to and from chemotherapy appointments again and Nancy to help me grocery shop, and others for whatever is needed. I am hoping this round will be lighter, without the Taxol that caused the severe neuropathy and the allergy.

starved-rock-fireplaceIn the round before surgery I looked ahead to things– the reading in Chicago, the trip to Indiana. Now I look forward to Thanksgiving, our trip to Chicago and family and our day-after stay at Starved Rock State Park, even if I can’t hike as far as I usually do. We will gather around the hearth of their gigantic fireplace and play games, and the restaurant will gladly make me mashed potatoes and whatever else I can manage to eat. I received a gift of cinnamon rolls this week which I put in the freezer looking ahead to Christmas, when all “the girls” will be here. There is a lot to look forward to this time of year. And that, too, is hope.

I wrote this as I explored the meaning of hope after my divorce and it continues to be one of my favorite pieces of writing (and most popular!). It is a centerpiece in my book H is for Harry. 

sand-hills-9-30-16And after my update to friends and family about my roller coaster day, I received so many wonderful e-mails. My friend Kate, who runs the monastery CSA, said she’s been seeing the Holy Spirit in the sand hill cranes lately. This morning we had a visit from our wetland family of four, drinking from the large pond and gleaning from the path near the large oak. Hello, Holy Spirit.

And Annette sent me this prayer by Mychal Judge, OFM, the NYFD chaplain who died in the Twin Towers on 9/11, to help me set my sights daily:

Lord, take me where you want me to go;
Let me meet who you want me to meet,
Tell me what you want me to say,
And keep me out of your way.

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Waves

http://www.andysavage.com/assets/1507/waves-40536.jpg

http://www.andysavage.com/assets/1507/waves-40536.jpg

By any measure, my healing and recovery and just plain old stamina through these cancer treatments has been great. Above average. Stunning even. These past two weeks since the surgery have been quiet, monitoring my body and kind of keeping still to let it heal, not pull an invisible stitch, concentrating on simple functions like digestion, walking, and sleep.  I’m grateful for no major setbacks, no fevers or bleeding or anything the doctors can’t explain.

When my mother was here, she had me on a good regimen. She is very schedule-oriented and pays a lot of attention to her own delicate system through diet and nutrition. She figured out what I needed, “healing proteins,” not whole grains and no raw veggies or fruits but yes to avocados and egg salad… We took our daily walks, working up to 1.5 miles, one loop around Klinefelter Park and home. We added a cold pack, three times a day. She had me on a pain medication schedule, too, programmed into my phone alarm. It was really comforting to do these things. We managed my food-to-pain-medication ratio with crackers at night.

By the time my sister arrived, ten days from surgery, I was pushing it a little bit– I felt like I needed more food because I was more and more nauseous, especially in the morning. Within a day, I drastically cut down the pain meds. Now I only take a couple Tylenol at night before bed, maybe a couple in the afternoon if the pain is sneaking up on me. But I’m still eating very cautiously. Walks, yes. Sleeping, yes definitely, even more than the first week.

And this Tuesday I meet with the oncologist again. And we talk about the results of the surgery, the pathology report, and plan the next step.

I wish there wasn’t a next step.

For some reason, the treatment has started to feel like waves to me. The first wave, chemo. The second wave, surgery. And now I’m standing in the water with my feet in the sand waiting as the next wave rises behind me. Chemo. The talk is of six more treatments. Not Taxol, to avoid the allergy and any more neuropathy. My expectation is that there will still be the bad week then two “good” weeks, the Carboplatin and something else. Something gentler?

I can taste most foods (annoyingly, chocolate still doesn’t taste good) but can’t eat them because of the nausea. Seems unfair. Hopefully I’ll be recovered enough from the surgery when the next wave breaks to have my Sunday pizza. My hair will have just enough treatments to fall out again.

People just keep saying things like: “It could take months…” “It could be weeks…” after surgery before things feel “normal.” One friend said after her surgery she only felt normal when she could turn on her side at night. Yes, I have my pillow wall to restrain me.

My father dug up the rest of the potatoes. I can eat potatoes and have really been enjoying them mashed and roasted and boiled. My sister is cleaning up the garden and harvested the butternut and crookneck squash. I’m going to put some squash in my next rice/quinoa medley.

I’m gonna keep wading out here and getting ready for that next wave.

 

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Pathology

girl-balancing-on-rockThis week we waited for the pathology report to come in from the tissue that was removed and sampled during surgery.  I wasn’t worried. In fact, I was more focused on healing from the surgery. The pathology report wouldn’t affect that process.

I started thinking about pathology on Wednesday, a week after the surgery. It seemed to me this could be the moment when they said there is no evidence of disease, NED, and that I am officially in remission. Or they could say that there was a lot of active cancer in the lymph nodes and other areas that hadn’t shown up on the scan, including possible cancer still in the lung lining. So far the surgeon hadn’t mentioned the bowel or the lung. What she had said was that it was a very clean surgery, and that there had been very little disease to find and remove.

I felt hopeful because she said they had taken everything that they could see. Nothing was so attached to tissue or important organs that they had to leave it behind.

imgresOn Friday afternoon I met with the surgeon’s assistant, Kelli Daly, who had been in the surgery. She gave me the pathology report.

It showed pink tumors in the omentum (4) and in the 14 sampled lymph nodes (2: 1 right and 1 left, in the pelvic region, none above that area).

 

Based on the pathology report, she staged my cancer at Stage IIIC.

Not Stage IV.

I was pretty stunned in the exam room. I didn’t know the stage could change. But the reading I’ve done since says that actually staging can’t be formally done until surgery, because the scans don’t tell you enough. I told her I’d been staged at IV and she said: “Why? Because of the fluid in the lungs?”

“Yes, and the scan showed nodules on the lung lining.”

“I was there and the surgeon reached her hand in and felt all around the lung and said it was completely smooth and there was no evidence of nodules or tumors.”

The picture given by the surgery and the pathology reports is that the tumors are larger than stage II and have moved outside the original site (ovaries) but have not penetrated other organs (not formed tumors in the lung or liver). So one of two things has happened: 1) the cancer was not as advanced as we thought at first; or 2) it was not established yet outside the pelvic area and the chemotherapy (and prayers) have knocked it back to stage III level. Which would be partial remission.

There are still those pink tumors on the omentum and the sampled lymph nodes to think about. Because of that, there will be 2-3 more cycles of chemotherapy to try to kill whatever else might be lurking there, microscopic or hidden in lymph nodes.

As you can see, I’m working on what this means.

cliff_edge_warningThe only way I can see the move from Stage IV to Stage IIIC is stepping back from a cliff’s edge. The initial diagnosis put me way out there on the cliff’s edge. The way I imagined even remission was maintaining my place on that edge. I’d have to just balance out there and live life on that edge, careful not to go over the cliff. Of course, one day the cliff could crumble beneath my feet.

I didn’t consider the possibility of stepping back. Standing on an ever-so-slightly safe space of cliff. That is how big this feels to me. And having just had a sushi lunch with my friend Kim Butler to celebrate 10 years cancer free with a stage IIIC diagnosis– that is “cured” in the cancer world– certainly helps.

https://taurinh24.files.wordpress.com/2012/06/woman_standing_on_edge_of_cliff_21134.jpg

https://taurinh24.files.wordpress.com/2012/06/woman_standing_on_edge_of_cliff_21134.jpg

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Hospital Recovery, Part 1: nuts and bolts

View from Mercy Hospital 2nd floor

View from Mercy Hospital 2nd floor

Hello from the other side of surgery. All went well. The surgeon described it as the “best case scenario,” both when she opened me up and went exploring for cancer and also in terms of the surgery itself. I came out of the anesthesia just fine and they wheeled me into a very small room on the second floor with a pretty stereotypical hospital view: the roof of the building outfitted with a fancy vent and some mysterious construction scaffolding. I’m not complaining at all. It was so good to know if it was raining or not, night or day. A window of any kind is light.

I know why people don’t have anything to say about surgery. You just have it and then you get out of the hospital as soon as you can. But because I really wanted people to tell me what I should take and what it would be like, here is an account of my experience for the interwebs. Keep in mind this was “best case scenario” for abdominal surgery. I hope it helps someone down the line feel more confident (and not pack too much).

I overpacked, using those lists, especially clothing. All I needed was the clothes I wore in, a loose sundress to wear out, a sweater/wrap, underwear, and a robe. I didn’t need any of my meds– they had what I needed and preferred to give meds to me from their pharmacy. Devices were good, but really I only used my iPhone until the last morning, when I felt up to typing on a laptop. Books were completely unnecessary. A load of podcasts, also unnecessary. Fuzzy blanket from home, good. I didn’t use face soap, just warm water, but I was glad to have my toothbrush and toothpaste, even when I just used an extra water cup to manage that hygienic task.

Wednesday

That’s the day I had surgery. Don’t bring anything inside until you get to your room. Don’t wear jewelry. They’ll have you bag your clothes as soon as you enter the process and send them back with your companion or put them in a locker for you.

Pre-op, reading all the warnings!

Pre-op, reading all the warnings!

Thursday

I had an epidural delivering pain meds to make the experience more consistent than pushing a button whenever you wanted more. I recommend this method of pain relief, except I got pretty over-medicated and sedated that first day. The anesthesiologist came by the first morning early, and I said (honestly) that the meds seemed to only reach a certain part of the incision and the top part was not getting pain relief. He turned up the level garfieldfrom 10 to 12 (right past 11!) and that day I couldn’t do anything. I couldn’t visit or listen to a podcast or keep my eyelids open. My husband said I looked like Garfield. Perhaps 11 would have been high enough. Or 10. I didn’t go on walks that day or actually get out of bed at all. I did breathe into the breathalyzer that is a fun plastic toy that helps keep fluid out of your lungs and keeps you from getting pneumonia. Pneumonia was a big threat, though really coughing (from being intubated) was, I think, the real problem. Boy that hurts.

post-op-- no changes except the gown? (as if)

post-op– no changes except the gown? (as if)

Friday

People were really mad at me for not walking! Sheesh! We took the pain meds back to 10 (my idea) and I faced my fear and got up. The pain was actually sitting up. Get nurse instruction and help for that. Once you swing your legs over and stand, you’re fine! I love walking, just not getting out of the hospital bed. Friday I was toting the walker, IV pole, catheter bag, etc. But Friday afternoon they removed the catheter. I knew this would be bad for me. The IV pumps liquid into your veins (I weighed 15 lbs more Friday afternoon than when I arrived Wednesday morning!)

This, my friends, is how they get rid of you! I was somewhat “independent” after my four walks, but still calling when I needed to get up to go to the bathroom. After an — ahem — long wait that thankfully did not end in disaster, I knew that night I’d be on my own. Luckily, chemo gives you good practice maneuvering with a pole and plugging in/unplugging the IV. The space between bed and wall was very narrow, but I could just swing it if I pushed aside the bedside table. That night I was up every 40 minutes or so to go to the bathroom. By morning, I was fully ambulatory and independent.

Saturday

This oak tree photo struck me differently after the surgery.

This oak tree photo struck me differently after the surgery.

I was ready to be discharged. Mostly I wanted that IV out of me (not to mention my hand had swollen up) and to skip the vitals, the Heparin shots (against blood clots), and get something more than broth, jello, and oatmeal in my system (don’t pack  snacks either). The Physician’s Assistant came on her rounds and I had already been up and about, was ready for my shower, and basically packed. We got rid of the IV, got a cold pack for that arm, and then I didn’t need to cover a single needle or device for my shower. I felt nearly free. Showered, packed, and had a lovely scrambled egg and baked potato.

That’s how my parents found me at 12:30. Restless waiting for them, I had gone for another walk around the hallway and further organized the room. I had just sat down to enjoy a cooking show (the Michigan football game was a rout) when they arrived. My only thought was: “Why did I bring so much stuff!” My dad hauled it down to their car, which was already stuffed with their stuff and provisions. Somehow it all fit.

And that is how I came to be sitting at the dining room table with my parents and husband before a lovely plate of rice with carrots and peas and some applesauce for dinner on the third night after surgery. We all looked at each other like we couldn’t quite believe it. Steve had planned on visiting, after the total sedation day of Thursday, but we told him to sit tight ’cause we’d be home by 3! The body and its ability to heal is incredible.

yoga-joes-treeHowever, I’m not quite the rock this Yoga Joe in the middle is.  I found him holding his tree pose even though an actual tree (Devil’s Backbone) was growing right across his face!

Namaste, everyone. Namaste.

Peace. Peace. Peace.

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Anxiety Dreams

chuck-close-self-portraitTomorrow afternoon we leave for the hotel near the hospital. I have waited for the surgery for an extra three weeks beyond what I was willing to wait– one more thing more or less out of my control.

I know in the last week or two I’ve been having anxiety dreams, but I never remember them. I’ve even woken up a few times gesturing, once punching the air. That’s not like me at all.

Last night, or more near dawn, I had a dream that I was a Chuck Close painting.

Close is known for his very large portaits, many of them self-portraits, made of a grid of abstract patterns. When you walk away from the portrait, you can’t see the abstract pattern, but up close it’s more difficult to make out the face.

James, by Chuck Close

James, by Chuck Close

I enjoyed it, being a bright grid of colors. I was small, though. I was looking at myself/my portrait like an iPhone, no doubt a reference to all the selfies I’ve taken of my strange self over the past six months.

Suddenly, though, the portrait, ME, shattered. All the little pieces, like pieces of tile, flew apart and scattered everywhere. It woke me up. How would I get myself put back together again?

This dream, I remembered.

I have full confidence that the surgery will go well. I am hopeful that it will be as minimal as possible, that the healing of all the afflicted areas has been continuing these extra weeks– with prayer and frankincense and my body’s own immunity kicking in to help. But there’s always anxiety.

 

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Blemished

I am still in the state where everything is about cancer. It’s like people say that you don’t remember hearing anything about x, y, z (usually a disease) until you or a loved one gets it. Then suddenly every news story is about or everyone around you has x, y, or z.

So it was as I canned and froze some tomatoes this past week. Look at this tomato.

blemished tomatoYes, it looks gorgeous! It is big and ripe and round. A beauty. But what about that spot?

Before I drop the tomatoes in the boiling water I cut out the stem and core and make a few cuts with the tomato shark (best tool ever a cheaper model for $5 on Amazon) so the skin will peel off easily. And I look for blemishes and cut them out.

In past years, this would not even count as a blemish. But this year we’re cutting out ALL evidence of disease. In fact, the tomatoes that go into the jars or freezer containers are getting more scrutiny. No residual disease or signs of early disease allowed. Mostly it’s just discoloration from resting against blighted limbs, and that’s okay (but still gets scraped off). But a brown or black spot– out. Overly soft spots– out! Any kind of oozing– no good!

chopped tomatoes in pan

And still, every night we have pans full of good tomatoes, and Monday I couldn’t lift the bucket filled with potatoes and tomatoes and had to put the bucket in a wheelbarrow first.

Speaking of potatoes, I’ve had trouble digging up the big reds without spearing them… which seriously compromises their storage capability. But one I struck through with my hand spade and it made a kind of flap on one end of the potato. When I was going through the pail taking out the tomatoes on top, I moved that potato and the flap came up, exposing the white flesh. I had a visceral negative response I didn’t understand at first. Then I realized it was like surgery. A flap of skin lifted. The savagery of the spade through the potato. I just went on with my tomatoes… Realizing everything, for a while longer, is about cancer.

tomatoes in pail

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Miss Sharon Jones

Miss-Sharon-Jones-beacon

Yesterday, Steve and I went on a date to Minneapolis. Our favorite dates go like this: Mass at the Basilica, brunch at Moose and Sadie’s, play at the Guthrie or movie at the Lagoon or Edina theater.

Because the film we wanted to see was at 12:15 p.m., things were a little crowded. So we went to Mass on Saturday at home and then went in just for brunch at the film. Somehow I thought that Lucia’s Restaurant was only open for dinner (2-10), or we would have gone there. Instead we went to Barbette, where I had a fantastic omelet with chunks of ham and stretchy, flavorful Gruyere, and Steve didn’t mind that there were not hash browns; the smashed red potatoes sufficed.

Then on to the main event: Miss Sharon Jones. It’s a documentary by Barbara Kopple (who won Academy Awards for Harlan County, USA and American Dream but who has done so much more). This documentary is about soul singer Sharon Jones and her comeback after a cancer diagnosis in 2013. Can I just point out that she performed bald, and looked amazing doing it!

sharon_jones-10317I know Sharon Jones’s story because our son-in-law, Homer Steinweiss, is the drummer for the Dap Kings (that blurry guy in back of SJ). The band has been together a long time, and were the touring band for Amy Winehouse. As Homer says in the film: “I’ve played with this band since I was 16 years old.” Steve remembers meeting Sharon at a record release at a record store in Minneapolis (I’m thinking it was probably Electric Foetus) where about 20 people showed up. They struggled a long time before achieving success. We were at their First Avenue show for 100 Days, 100 Nights, their breakout success, where Homer reported excitedly that they had sold out– the first sold out show of that tour. After that venues got bigger and selling out the venue a more regular occurrence.

Sharon Jones and the Dap Kings are known for sparking the soul revival that is very strong in popular music right now. A few years ago, driving home from a friend’s cabin, the funky, rural public radio station had pretty much divided all the best songs of the year into two categories: funk/soul-inspired and British-pop-inspired. Daptone Records, a studio in Bushwick, Brooklyn, basically started so the Dap Kings could record music the way they wanted to– funk and soul only on analog equipment– and press real records. In that way they are part of this whole “back to the basics” movement in, well, everything. Artisan records!

Because of Homer, we were aware of Sharon’s cancer in 2013. The band was about to release a new CD, Give the People What They Want, which was delayed a little more than a year until Sharon could finish treatment. And she just barely finished treatment before a tour was upon them.

sharon-jones-voice-cover

I have trouble imagining touring two-three weeks after chemotherapy. Sharon went out there and sang bald! That is so brave! I hadn’t realized that until I saw the trailer for the film.

Sharon really sums up “the head game” of returning to life after treatment when she says: “I’ve lost my confidence.” I know for me I have to get psyched up, still, for a bike ride or to do laundry (going up and down stairs) or work in the garden. And I can call off any of these activities whenever I want. In this film we see the gigantic machinery of a CD release in action, and the 11-piece band waiting to get going (and earn some money), and the pressure on Sharon is intense. Because even though these young people say their first concern is her health, and they mean it, they are also setting up a tour and record promotion and it’s rather high stakes. And it’s one thing to perform a single song on a late night show (though what if chemo brain makes her forget the lyrics?) and another to do a 90-minute set on stage before a large live audience.

And when that day comes, you can feel the love for Sharon Jones. The patience of the audience, and the true joy of the audience to see her return.

Also, Sharon Jones is fierce and she his funny. She has her sense of humor to help get her through. She jokes about her bucket list and as she runs down her television schedule for the day– from Michael and Kelly through Ellen. When she gets the call that she’ll be on Ellen, she can barely contain her excitement. “That’s like meeting Oprah!” she says. One more item from the bucket list.

And I couldn’t help appreciate that a friend of hers put her up in a rural setting during treatment in New York State. And made green smoothies and good food for her! I was so happy to see her in that setting, not in a New York City apartment or even with her extended family in Georgia (who were calling for money while she was in treatment). I have known for years that Sharon had a large number of people to take care of– but this film brings it home.

la-et-ms-sharon-jones-cancer-valerie-june-revi-002

This is a beautifully-made film. Sharon Jones is an incredibly strong woman. There is a powerful scene where she goes to her Pentecostal church and sings– and dances. She was in pain climbing up the church stairs, but when the spirit moves– she comes back to her powerful self. Her voice and her feet won’t fail her. It’s a turning point in her confidence (though turning points are often short-lived in this cancer game).
It’s also an incredible example of what it means to “live with cancer.” You have to be brave every day and keep bringing up your game. How does a whole community, and a fan base, go forward in this news and experience? Sharon’s worry (one of them) was that the CD would be released posthumously and sell really well, because “poor Sharon, oh she was such a saint, she was so amazing, how come we didn’t recognize it”… the Jim Croce story. So the release and the tour itself are a triumph. And when she isn’t up for making a video, too, they do an animated video that she adores– they even got her beauty mark in there. No sugar-coating of Sharon Jones, who was told she was too black, too short, and too overweight to make it as a singer. Take that!

sharon-jones-dap-kings-return-lead

If you don’t know the music of Sharon Jones and the Dap Kings, you should listen to some. They also put out an excellent Christmas album last year. And if you get a chance to see Miss Sharon Jones, (the film or the live performer), don’t miss her!

For a very poignant and great interview, I recommend this visit she did with Terry Gross for Fresh Air. Right now, she is touring and getting more rounds of chemotherapy. Hers was a short remission, which does not help the longterm prognosis. Knowing this while watching the film was also sobering. One can understand why she wants to continue performing now, not just go to bed. Everything I hear is that she has good energy (though she’s performing with neuropathy, which I cannot imagine) and is in good spirits when she shows up to perform, to record, and etc. I’m hoping for a long life and a lot more music from Miss Jones.

sjdk-christmas

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August

August 22 duskIt has been a beautiful August. Just like June and July. The prairie behind our house was burned very late in the season, so it is behind– or it is just different than the other prairie. The river of blue stem came in and matured before the yellows– the coneflowers and tall sunflowers– bloomed. Last night at 8:30 it was nearing the end of a luminous sunset, with lightly colored sky and the burst of yellows on a mellow purple canvas. A camera can’t really capture it, but this comes close enough.

selfie aug 22 2016I’m having a late bloom myself. My hair is just starting to come back, mostly white, seemingly straight. It’s soft, like the fleece blanket my sister gave me, or a stuffed animal’s fur. Velveteen rabbit, say.

I’m taking good care of my hands, but then I do something stupid and hurt them. Last week I cleaned and trimmed the garlic, my biggest harvest (planted in October 2015). On my way from the shop to the other barn, where I had another bed frame of garlic drying, I pulled down the garage door from the outside and crushed two fingers. I ignored it, just hoping the fingernails wouldn’t fall off. They’re mighty dark purple (and there’s dirt deep under the nail bed) but I don’t think I’ll lose them.

garlic harvest 2016

kitchen glovesSomeone, my sister or my mother, left these handy rubber gloves in the cabinet below my kitchen and bathroom sinks! Truth is, I’ve never been good at protecting my hands. But now I’ve been bandaging the fingers and wearing the gloves when I harvest in the garden or clean in the kitchen. Both came in handy for yesterday’s canning session. The only canning session I’ll have this year.

Then at the end of it, I opened the steam canner and scalded my other hand!! I put aloe vera on it and it is okay. But what is wrong with me?

impressive, no?

impressive, no?

I had to laugh when, after the heat of the kitchen, I took a cool epsom salts bath. There I was, with my two hands held out of the water, soaking. Though cool, it was not quite cool enough for the burned hand, and I wanted to keep the band-aid protected nails out of the water until the end. Hands and feet. I need to be mindful of them. I’m still healing, still coming into bloom, even this late in the season.

garlic drying close-up

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Summer Eating

Greek Salad

Greek Salad

It is wonderful to be back in the kitchen during tomato season. Even with a sparsely producing garden, there are ingredients to match my energy level without completely overwhelming me.

My temptation in these times– as during the weeks of chemotherapy with their rise and fall in energy level due to steroids and the effects of the chemotherapy– is to push to get things done and be ambitious in feeding mind, body, spirit… I want to write and I want to read and think about what I’ve been reading and I want to clear out the weedy garden beds and dig the potatoes and clean and store everything. I also want to visit people! I’ve had so many invitations to social engagements since announcing my “extra time” before surgery. I find I can only do one “big” thing a day, and often that has been a long, long, wonderful lunch with someone I haven’t seen in months.

So I often don’t have much energy left when it is dinner time. I’m trying to keep it simple. Every few days we have enough cucumbers for a cucumber salad with yogurt, sour cream, and dill. Dried dill from last year’s garden now that the dill plants are dead. I could eat a caprese salad with chopped tomatoes, basil, fresh mozzarella and olive oil every day, so as long as we have fresh mozzarella, that is on the menu.

Even the tomatillos are sparse. There are a lot of them but they just aren’t filling out and bursting their husks. But there are a few. One night when I was looking for a corn/tomato relish to go with scallops, I found something even better that I want to share here: tomatillo guacamole. I quickly forgot about the corn relish.

scallops cilantro guacThe tomatillo guacamole is so bright and citrusy and fresh, a perfect accompaniment to fish. It would also be great over some simple enchiladas. Or with chips. Or a dollop in chicken chili or chicken tortilla soup. We had the scallops with the guac and orzo, tomatoes just drizzled with oil and topped with basil, and leftover green bean, lentil and corn salad. Later I had the guacamole with the leftover orzo, which was also good! Here’s the link to the original at kitchn.com.

Tomatillo Guacamole

1 avocado, halved and pitted
1/2 pound tomatillos, husked and coarsely chopped
1/2 lime, juiced
1 garlic clove, coarsely chopped
1 small shallot, coarsely chopped
1/2 1 jalapeño, seeded and coarsely chopped (to taste)
1/2 cup cilantro leaves, coarsely chopped
1/2 tsp cumin
salt to taste

Combine the ingredients in the bowl of a small food processor and pulse until well blended. And if you know me by now, you know I used a teaspoon of cilantro chutney in place of the cilantro leaves. I think I had 6 tomatillos, probably less than  1/2 pound. I skipped the shallot, too.

Tonight, I made an easy Greek Salad. I had a mix of beautiful cherry tomatoes thanks to my friend and seed saver Scott Pauley. He’s growing 17 types of tomatoes this year, and I got some large, beautiful yellow grape tomatoes streaked with red from his garden. I had Supersweet 100s (the standard cherry) and also Mexican grape tomatoes (Scott gave me the seed last winter when we did our annual exchange).

I also remembered good old Patricia Wells. I have so many fancy cookbooks, now that the farm-to-table seasonal eating craze has taken off. But I still love Patricia Wells’ Salad as a Meal. This is the book I looked to when I wanted to store roasted peppers and to pickle jalapeno peppers. I also look to it to make sure I haven’t forgotten anything in a Salad Nicoise or Greek Salad. All you really need for Greek salad is tomatoes, cucumber, feta cheese and olives. To the one below you could also add red onion and other things. I had a nearly finished bottle of capers I tossed into the mix. I couldn’t remember the dressing ingredients so I consulted Patricia Wells– and learned she makes hers with lemon juice and olive oil, no vinegar. I added half a squeezed lemon, but still used a little white wine and white balsamic vinegar (no red in the house).

Greek Salad

mix of cherry and grape tomatoes, cut in half or quarters
2 medium cucumbers, ends trimmed then peeled and slices cut in fourths (It reduces the chance of bitterness to cut the ends off first. I like my cucumbers peeled in strips with some skin left intact.)
seedless olives (I usually have Kalmata on hand from Trader Joe’s) halved
1 red pepper diced
capers if you like them
feta cheese
dressing of red wine vinegar, lemon juice, salt and olive oil, whisked together and poured over the salad
torn basil leaves or fresh oregano added to the bowls when serving

This is enough for a meal on a hot summer evening. But Steve is a landscaper, so we ate this with some reheated chicken thighs from a barbecue last week. It would have been good with tortellini added right to the salad.

And for those nights when we have some zucchini or summer squash, zoodles or a simple saute still does the trick!

veggie saute

 

 

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The Date

hope chairWe have a date. It is September 7. That is when I will have my “debulking” surgery, known as the Mother Of All Surgeries (MOAS).  I saw the nurse list it on a form as “exploratory/hysterectomy.” I’ve been calling it the hysterectomy+.

I love my surgeon. After the serious fiasco of my surgery plan falling apart two weeks before I was scheduled to get surgery (for that story, read the second half of this post ), I met with my new surgeon on Tuesday (August 16). August 16 was the date I was supposed to have my actual surgery at Mayo.

This was a hard appointment. Going over the details of the surgery was tough– the main point which is that cancer cells are microscopic and she would get what she could see, where she could see it, but at Stage IV she would inevitably not get it all. The incision will go from my diaphram/breast bone down to my lower abdomen (though she will go around the belly button). This was actually reassuring to me– she can get more places with an incision like that.

She explained the bowel situation– the cancer nodules can become like plaque. They start in the lining but can become patches that anchor into the bowel wall. If that has happened, she will do a bowel resection, cutting out part of the bowel and resecting it. That might not happen in my case, but on the worst case scenario side, there may be too much “plaque” to remove and still have a functioning bowel.

For this surgery, depending on what she finds, it is a balance between removing the cancer and cancer-damaged tissue, and preserving quality of life and life itself through maintaining functioning organs.

My surgeon is fantastic. She is a superstar. I just loved everything she said, even as it was very difficult to take in and process. Her approach, her passion, her willingness to bond with me, a woman who has come to her office at the 12th hour, was inspiring. And I am grateful.

The date was initially scary– nine weeks out. When in my mind I had 3-6 weeks as the optimal window. But my surgeon was confident, she said really the only problem was the anxiety, the mental game, for me. That anything that was there was not brightly lighting up the scan, that my scan results were “exceptional.” That whatever was there, if it was growing at all, would only be easier to “get” in the surgery. That going to nine weeks, in my case, did not change the surgical plan at all.

And so, I have processed much of this information. And amazingly, as I have throughout, I feel quite at peace. If anything, these three weeks are too few to do all I want to do. I want to write, and I made a start of that yesterday. I want to can tomatoes, and I will do that hopefully this weekend.

I told Steve, after a dinner of scallops on Tuesday night, that the gourmet food would now slow down! There is time. Time for some “healthy, feeling good” living before the surgery. The surgery followed probably by two more rounds of chemotherapy, to kill every microscopic cancer cell we can manage to kill. Which will take me to the end of 2016. And I will say goodbye to this year, and march into 2017 with hopes for a long remission. Hope. And Faith.

Again I return to my first night’s prayer. Surrender. Falling into this. Trusting in God and surgeon. Trusting in what will be. And so many people have responded with the words of Julian of Norwich: “All will be well.” Simple and powerful.

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