Can you imagine, it is now the fifth week after my surgery. I was fantasizing that I would be up and out and doing most everything I wanted to do by now. In our world anything that takes 5 weeks is out of the question. I definitely have been caught up in the NOW if not yesterday,quick fix confidence. And here I am plugging along and waited for some more energy.

A couple of big accomplishments of the whole family for the week, were getting the house semi-decorated for Xmas, and getting the tree up and decorated. We have been experimenting for several years with a pre-lit, artificial tree. This year we first couldn’t find the top to the tree, and then some of the lights were out. So, regardless, we now have a cozy tree. I have missed all of our favorite Christmas parties, by now, but last week was in no shape to even dream. Special thanks to my Book Club who sent pictures from our annual couples Glug Party. I am hoping to be there in Jan.

Luke and his companion-dog Mary Jane arrived early Mon. a.m. from Malibu. Luke is exhausted and excited to have finished his finals in second year at Pepperdine Law School. One night when we were all here for dinner we “skyped” John and were all able to chat a bit. He and a friend have planned to travel over the Christmas break. They will travel mostly in Thailand. Thru Jim Nelson, John has gotten in touch with Albert Griffin, another MC guy, and has really enjoyed getting to know Albert.

We had our post-op conference with Dr. John Chan this week. We had seen the pathology report, but of course needed the interpretaion. So, formally I have third stage ovarian cancer. We discussed options for chemo, and whether to participate in a study that Dr. Chan directs at UCSF. The advantages of participating in the study would be fairly intense monitoring, and several teams working on it. Plus they could use a new drug they are trying to get approved for ovarian cancer. The major disadvantage is that we would be randomized into a group, and would have to come once a week, or once every three weeks – but I would undoubtedly get the once a week. I can’t drive for another week, and you’re not allowed to drive to chemo, so it would be four to five months Of travelling 40 min. in unpredictable conditions to be at the hospital 4-5 hrs., and then figure out how to get home. Most advice has been to get the same chemo in Marin (except for the experimental drugs) and live thru it. We’re still working on it, but the process should start mid-Jan., and yes, I will lose my hair, so I’m also looking at wigs, hats and scarves. Thank you again for all of your comments, prayers, and keeping in touch. Will get to bloggin’ more frequently, but thank you for bearing with the slow process.

Love Annie/Noel

Dec. 13 has several good reasons to post. It is the day before John’s 24th birthday, and the day before Luke completes his finals in 2nd yr. of Law School. I thought I’d respond to a few of the concerns expressed by a number of friends. Well, what do you do all day? Are you just going crazy? Should we get some good movies? books? books on tape? So, the strangest thing is that my caretaker, sister, and I have just been so constantly in motion, and at it that we haven’t even considered the luxury of a little boredom. For me, the biggest issue is that what might have once been done on an 8, out of ten, is now happening at a 2. Someone should do a stand up on getting from place to place in recovery mode. My other timing is that I have about a 2 hr. window of clarity and energy, and then need to re-fuel, rest or nap. Eating, cleaning up, doing the cancer reading and research is the other big deal this week because we do have our appt. on Fri. for the big pathology/options with Dr. Chan. As of today we also just got Thanksgiving and fall decorations put away and are doing a very little Christmas.

My biggest breakthru news is that over the weekend I had a return of my appetite, and most of the time my taste buds are neutral. Gaining weight and keeping hydrated is the most impt of all that I need to do. That truly is my very best news. Thank you all for continuing to be so responsive. I’m sorry I’m so slow to get news out, but I’ll just plan to get something out. Please do keep us in your prayers as we do you.

Love Noel/Annie

Helllloooo from recovery,
My second Low-energy day in a row instructs me that my body is taking the lead here, and I am the observer, learner. Restless nights, fitful sleep which are normally shakeable, seem to be very hard to deal with. I have my whole routine geared toward even a decent night’s sleep;hoping I’m getting closer to it. And I know everyone has that feel with a little bit of energy, then we’re off to the races. So, overdoing it still REIGNS – and I have to remember and even re-learn that.

Some of the stranger recovery pieces are learning to do the low-residue- no fiber diets. This means no fresh fruit, raw or steamed veggies, all meats well-cooked, white flour, white rice, white bread, white tortillas, low-fiber cereals. My sister, Sarah, brought a number of cook-books, so we’re really working at it, Sarah, mostly. Besides doing my special diet, she prepares a great dinner for Clark, and herself. I’m also trying to get ready for Chemo cooking and just good solid anti-cancer changes. Luckily we have been doing healthy cooking for the most part. One of the big hospital jokes was that I was about the healthiest cancer patient they’d had for a while.

So, I’m going to have lunch, take a nap, and get some sunshine and walking. We have a small library of current books on ovarian cancer that Clark has ordered, so there is so much to learn. I hope by next week to have some more energy to respond to so many of your nice notes. Do know your prayers , energy and support hold me in healing.

Love Annie/Noel

Alleluia! I am home, and it is so good. In our last crisis, I was in isolation status, to check and see if I has developed an infection, which might affect the whole floor. It was actually strange and fanciful as each person who popped into my isolation had to be gloved and robed in a gauzy, lemon chiffon full-length gown. I kept expecting the Munchikins and Good witches from OZ. And this went on for several days. Strangely, I could take my walk, as long as all gowned. I was finally cleared to go, Transition from the myriad webs of medical takeovers, techi-minnions who can do anything but let you sleep, and the claustrophobic efficiency of bed and room took me several days to accomplish, even with my sister, Sarah, Clark and Ellen all leading separate charges. I was released Tues., Nov.29, about 6 p.m., and we were home by about 7:30. Each step is all new and not what I’ve expected or planned. My new job description is to get strong, gain some weight,stay hydrated.

I still do not have a full pathology report from the docs, which would lead to the chemo scheme. I at least know I have until Dec. 16, when we will be given some options. Cancer has kept dodging in and out among friends and family over the years, but this is certainly my closest look at chemo- so I’m really learning what I can, side effects etc. as part of the options. We also have experts, and expert advice in this area.

Somewhere in the process, I lost about 20 lbs. so I am a mess and need to do some nutrition building.
For two days we’ve been able to sit, read and walk in delightful sun. Last for best, I has a good talk with John,my 23 yr. old, working in Japan. He says he is doing well, and it just means so much that all the friends from home have been in touch. Luke, our 2nd year Law student at Pepperdine was with us for Thanksgiving, as were Kathy and Jack Berkemeyer from Chicago. Next year, Stanford. Anyway, know we are greatly supported by all of your prayers and energies. Advent has always been my favorite liturgical season. I wait and rest in the thriving darkness of the womb. Come, come Emmanuel.

Love Annie/Noel

Noel was discharged from the hospital late yesterday afternoon and got to sleep in her own bed last night. Her sister Sarah from Denver came in yesterday and will be staying with us through Christmas, which is a tremendous help. We’re now trying to determine what she can eat on the low fiber, low residue diet she’s on for the next four to six weeks. Almost everything she likes (e.g., fresh vegetables) is NOT on it.

Clark

Call from Noel this evening – she slept a bit, she ate a bit (some real food) and she feels pretty darn good.

Clark

Dear all,

The good news is that last night Noel was able to demonstrate that her bowel is fully functional. The bad news is that it launched into a level of hyperdrive that only a Trekkie could appreciate. The subsequent good news is that, while they feared an infection (something called c.diff), the test results were negative for infection.

When I arrived early this morning Ann was worn out and sleeping. Later in the morning she got in a good two hour sleep and we did our first rounds of the ward after “lunch” at about 1:30. “Lunch” consists of broth, coffee (she prefers tea, but it’s a hospital and they didn’t ask), jello (she’s taken one bite in two days) and some apple juice. Tonight and tomorrow they’ll try introducing semi-solids (another Star Trek term I presume).

Remember I reported on how Noel’s doctors could not believe she was actually 39? (Stop it, Rochester.) So today, as I was leaving her room I encountered another patient making her own rounds of the floor. My first impression is that she was around Ann’s age. We exchanged greetings and I walked on down the hall. As I did, I heard the woman say to her escort, “He looks so much like my father.” Well, see if she gets a greeting from me in the future.

Exit from the hospital has been delayed a day or two, but will happen soon. In the meantime, Sarah (Ann’s sister in Denver) arrives to stay with us and get Ann to start eating and walking around the block. I can’t wait.

Ann and I can’t thank you enough for your posts, cards, emails, etc. They mean the world to her. I also apologize for not being able to respond to each of you directly. i hope this can satisfy some of your interest in how things are going.

Clark

Luke and I arrived this morning to hear Noel gabbing with the nurses’ assistant, and we could tell from the tone and timbre of her voice that she was feeling better. Fortunately, watching last night’s game didn’t set her back as much as it set back those of us who who had to watch it in person.

The pharmacy assistant came in to see if she could give Annie some instruction on the Lovenox injections that she’ll have to give herself when she gets home (to prevent blood clotting), and Ann said she would be happy to make an appointment with her. This exchange helped me see that she truly was getting back to normal.

She is off the sips and chips restrictions, and she had some tea this morning; indeed, her weight is almost back up to pre-surgery levels. Her energy is also much better today, though right now she is snoozing a bit (as is Luke). A peaceful morning.

Clark

Hello clark, family and friends,
It has been so good continuing to hear from you. I gave up my morphine this afternoon to see if I COULD BE CLEARER, and so
Far it is much better. I think I will still
Have to call it mY blob, until I can actually get some thoughts and ideas together. The hardest thing post-surg. Is that I still can’t
Have a drink of water. I can know let small ice-chips melt on my tongue. One 9oz cup every 8 hrs. I
also can’t have any. Food or liquids. food I don’t mind at all.
Ihaven’t had
Food. Or liquids for quite a while, so it will be delicate re-intro. how long? Nov. 14-21, I was on a clear liquids . During OCT. I had about four regular dinners. what I like best about the blog, is
That it seems to get us all reconnected. If Ididn’t get you on the blog it is totally unintended. Back again later.I can feel the energy and the prayer.. Love Annie///Noel

Noel swears she’s going to post to the blog today, but I have my doubts. It’s been two days of medical progress, but she’s not feeling it yet. She’s had trouble sleeping the last two nights, along with some gas build-up and nausea, so she’s more worn out than she was immediately following surgery. But she was finally able to prove that her colon had started to function again, which is the big step the doctors were waiting for. Still, she sleeps when she can (they moved her to a room further from the nursing station, where the chatter was disturbing her, and from the storage closet which seemed to be the source of constant noise at night). It was a bummer not having her home for Thanksgiving, but as she noted she had nausea and no appetite, and she was too worn out to visit anyway.

Just after Luke and I arrived in her room this morning, an entourage of four doctors came into the room to explain her medical status and progress. Annie carped a bit after they left that they had been there earlier and said the same stuff – I think she’s finally starting to get a feel for academic medical centers and teaching hospitals! She and Luke then did four circuits of the ward so we could check that off on her daily to-do list.

Flowers started arriving on Tuesday and now her room is starting to look like a florist shop – a very cheery florist shop (thanks to all). Robert and Laurel Jones stopped in for a quick visit, as did Kathy and Jack Berkemeyer (friends from Chicago who are out here celebrating their anniversary and joined us for Thanksgiving). One of Luke’s friends from law school, whom Noel had never met before, even stopped in to deliver some flowers and to visit. (I play the role of bouncer so she can rest, but I’m not always there.)

Noel’s doctor just called to confirm that she’s on schedule for post-surgical recovery and that he’s pleased with her progress. Monday looks to be the likely discharge date, though he emphasized that it all depends on how she feels and when she starts eating.

Edit: Forgot the other good news. The ND-Stanford game is on ABC, which Noel can watch at the hospital, so she’s happy aobout that. She asked me to remember to bring her something distinctively Irish to wear at the hospital tomorrow. Go Irish!

Clark