Ingrid's Breast Cancer CLOG

Thank you to everyone for all your love and support! It means so much to all of us. Since emails and phone calls to everyone who loves Ingrid would take more time and energy than the whole family has, we thought that having one place to check in for the latest updates would be the best way to keep everyone informed. So, we'll try to keep this page updated regularly. Feel free to share the site with anyone you think would like to keep up with Ingrid's progress. Love, Ingrid, Greg, and Eli                              Send email to us here

There were great things and hard things about our trip to Panama. Everyone got to practice their Spanish, and we saw many good friends. We worked to get our house and research in order and to fix and sell our car. We walked a few of our favorite trails (though not as often as we had hoped) and visited the Azuero Peninsula. Eli spent a lot of time playing in the water, and family time was our top priority. All these things were good.

Recovering from breast cancer in Panama was hard. My burns continued to intensify almost right through the three-week trip, and I could not tolerate any tight-fitting clothes, backpack straps, etc. So much for the idea of using prostheses and mastectomy bras! A big patch of the skin under my arm turned black like an overdone barbequed chicken breast and peeled off, leaving vulnerable pink tissue underneath. My body was fighting off infection there and I ended up with lymphedema swelling through my chest. To combat that, at night Greg ace-bandaged me up in a big quilted getup and I wore the equivalent of a skin-tight finger-to-armpit oven mitt. Remember, this was in the tropics, in a cement block house with no breeze and no air conditioning.

Psychologically, I found it a challenging change of venue. People in our neighborhood in Panama knew about my having had cancer, but they felt too awkward to mention it. People who did mention it said things like "I heard about your trouble," and other maddening euphemisms, accompanied by pitying looks toward my chest or, worse, toward Eli. I believe my neighbors all intended to be kind and supportive, but it was as if they looked at me and they saw Fear.
The people who didn't know me could not figure out what I was, with my buzz cut etc. As a friend in my cancer support group once said, I felt invisible and yet horribly exposed. It was a relief to come back home.

Radiation side effects have just taken a turn for the worse in the last few days. Just now when I feel like I should be in "I'm done!" mode, I feel tired all the time. My brain is doing those all-nighter type behaviors, like running the dryer with no clothes in it, or driving to Eli's preschool when I should be on my way to the hospital. This is unfortunate because this week I am trying to juggle more important work and home tasks than ever. But once I get on the plane to Panama, I hope to be able to shut my brain off at least for a couple of days. In the meantime, I am pushing my body hard.

News from Panama is that the boys are doing great. They go swimming every day. Greg is running around fixing a year's worth of accumulated Panama degeneration (house, car, and research program). Eli is hanging out with the neighborhood boys. He was speaking 80% Spanish by the first day, and last night on the phone, Greg reported that Eli had only spoken 10 words of English that day. Eli broke into the conversation with "Well, probably a few more than 10." We are amazed, because for over nine months Eli refused to speak any Spanish at all.

This week is another busy one. Ingrid is busy setting up a new research collaboration (she's rapidly approaching her old self), and I've got a series of meetings with my Santa Cruz field crew, students, and colleagues before I head off to Panama. Eli is so excited about going - he insisted on packing yesterday, and was concerned that we weren't packing his beloved monkey Ee-Ee yet (lest we forget him). Sunday he and I head down. We are both looking forward to seeing friends, swimming a lot, walking and biking (at least Eli on the bike), and waking up to howler monkeys, red-lored amazons, and toucans. We'll miss Ingrid for two weeks, until she joins us mid-July.

It is great to be feeling close to normal again. I've walked at least one way to campus and/or back almost every day for the last week, and each day it gets easier. Ingrid's energy is much better (but as always she pushes to 110% of whatever she has) and her hair is growing back in (like a soft baby bunny, although we still aren't sure what color it is).

Greg and I celebrated our anniversary today by going out to dinner, and Greg made it special by driving the car for the first time since his stroke. We look back on our six years of marriage and it seems like we have aged more in the past six months than in the previous 66. We hope that we will come out of this time of adversity stronger than ever; certainly this has been a year of coming to terms with how very much we mean to each other.

Meanwhile I have to decide whether or not to wear a wig. It's Santa Cruz, so I could probably even go bald if I wanted to...as long as there was a cool tattoo on my head.

Although it has already been a month since my last chemo treatment, it is clear that my body has not yet fully recovered. In addition to wayward hair, digestive problems, fatigue, and wavy fingernails, I am also getting used to menopause. Chemo shut down my ovaries, and this is probably a permanent state. Because I had an estrogen-receptor-positive tumor, it is important to do everything possible to suppress those hormones. Unfortunately, hormones are involved in pretty much everything. This is one of the discouraging things about breast cancer treatment.

Monday 4 June (from Ingrid) Sorry we've been out of touch for a while. As things get back to normal, we both have taken on more work responsibilities, and this makes it hard to check in with the web page. But I guess in a way that's a good sign. I started radiation therapy last Wednesday, and I already have four sessions (out of 27) under my belt. Every day I drive over to the hospital (takes 15-30 minutes, depending on the traffic). I arrive at the radiation facility and fast-track it right into the back room, where I have my own personalized cubby with my own hospital gown waiting for me. Usually within a few minutes of changing I am ushered into a dark room by shockingly cheerful people. I am lined up on a hard stone bench with a plastic head rest and a cradle above my head, which keeps my arms in the same uncomfortable position every time. Every week they will take a set of x-rays to make sure the radiation beams are hitting the right spot (see cool scanned version at left). I'm feeling great, relatively speaking. Right around 2:30 in the afternoon, I feel like I am walking through the Land of Poppies with Dorothy and must, just absolutely must, lie down and fall asleep never to wake again. I try to take a brisk walk every day to help with fatigue and insomnia (a combination weird but true).

Meanwhile, Greg is also doing much better. He now only gets dizzy if he looks straight up, and he can pick things up off the floor with elegance and style. He still can't put on his socks while standing on one leg, but hey, there are probably plenty of non-stroke-victim people who have that problem.

As you might gather, Greg is improving steadily. In fact, just today he was demonstrating how he can now touch his nose almost every time (you never know when this will come in handy)! We both have moments of feeling almost normal, followed by waves of exhaustion. We both are taking frequent naps.

Meanwhile, Eli is having withdrawal symptoms from the steady stream of fun helpers who have been visiting over the last 5 months. The other night he complained, "How come we don't have guests anymore?" So really, we need to invite you people back! Apparently the house feels very empty without you.

The doctor also showed us images from the MRI, MRA, and CT scans, including a magnificent simulation of the blood flow through Greg's arteries into the brain. We could compare the right and left and see exactly where the dissection occurred and where the blood clots were/are. We also saw the dark clouds in Greg's brain that indicate the location of his stroke. I found this chilling and, in a way, profoundly sad. The tissue that is dead will never repair itself. Looking at these dark spots, I felt the same sense of loss I sometimes feel looking at my scars. Something has been lost.

Greg did not share my feelings of sadness. Instead, his was a sense of relief, of narrow escape. The last thing the doctor said to us was, "Well, I don't mean to scare you by saying this...but you are a lucky man." Greg could easily be dead now, or might have experienced impairments that would have ruined his career or changed him fundamentally. If the clot had gone up the highway one more exit, he might still be in the hospital trying to learn how to talk. For us, the glass is definitely more than half full.

Thanks to everyone for all the help with food, transport, and caring for Eli. We think that after this week we won't be needing more food and Eli help. We have so much enjoyed spending time with our visitors, and hope to continue to do that without the excuse of cancer.
If our needs change, we'll revive the old calendar system. THANK YOU!!

On to the next thing. Yesterday, I saw my radiation oncologist and was mapped out for radiation treatments. They measured me from every angle and took I-don't-want-to-know how many x-rays, and then put lines and x's all over my chest in purple Sharpie. In Sharpie! This is a detail to warm the heart of a field biologist. Unfortunately, the hospital's CT scanner broke down before I could complete this process and I had to go back again today; I had to keep my purple "battle plan" perfectly intact in the meantime (no hot tubbing). Eli was utterly fascinated by this purple sharpie battle plan.

Now that the CT scan is done, I wait impatiently for a physicist to devise the master plan for where all my beams are supposed to go. Eli calls them "get well bullets."

Greg is hanging in there. He tires easily and if he overdoes it--sitting at his computer too long, walking too long, scheduling too many meetings in a day--his symptoms get noticeably worse. Each of us affectionately hassles the other for doing too much. It has been challenging trying to juggle all the doctor's appointments and trips to the hospital that we both have to make. I'm already sick of driving across town, and we haven't even started the daily radiation grind.

Wednesday 8 May (from Ingrid) Yesterday I started my last chemo cycle!! To celebrate, I decided to upload a couple more pictures from my hair nadir. I have to admit that I'm getting used to being bald. Greg says that I look like a stylish alien (in a good way). (Eli's card says: "Der Mamey; IHopUG-t Wal Soon; F(r)am Elias") Highlights from our trip to Pinnacles: Five soaring California condors, three glowing campfires, two spectacular dawn choruses, roasted marshmallows (definitely not a part of your recommended cancer diet), kids reveling in real German sparklers while staying up much too late, keying flowers, hiking through a wet cave, collecting dozens of caterpillars in a tupperware container and then letting them go.

For those interested, here is the closest I can come to what this is like. Imagine looking at the world on the screen of a digital camera. If you are holding steady, looking in one direction (like at a computer screen, or a book), everything is great. Now pan around. The image on the screen is just a little delayed from how you move your head, and takes a split second to catch up when you stop. Now try walking around or making your body do things, while only looking at the camera screen. Your body and the images you see are just a fraction off, and boy is it disorienting. That's what it is like all the time. When I first got home last Monday, I think the delay was as much as a second or more. Now it is down to a fraction of a second. Still not ready to drive a back-hoe. So slow and steady it is, for a while yet.

I'll be on leave for the rest of the quarter, but working from home with graduate students and thesis students, and working on catching up on my own work. And of course spending as much quality time with Eli and Ingrid as possible. Eli has been great, and today we started a program where he takes me for walks each afternoon to a different place, so I get good exercise. He has been very inquisitive - what it was like in the hospital, what the stroke was like, what a stroke is, can he get one, how long until I can do x, y, or z. (He was particularly concerned about funky dancing, because he is planning a funky dancing party for his birthday in August). He is very cuddly, and very interactive, and just a little bit on the fragile side (but seeming to find his center more each day). What an inspiration he is.

Once again, thank you everyone for the emails, calls, cards, dinners, rides, walks, childcare, and love. What a wonderful community we have!

Of course, the most exciting thing right now is that tomorrow is Ingrid's last chemo day! Woo-hoo!! A week from now she'll be coming back out of the chemo dungeon and not have to go back in the following week. She has been so strong through all her chemo (and especially the last couple weeks with the added medical adventures), and kept such a can-do attitude. We are both so excited that she has made it all the way through without getting seriously ill or having problems that interfered with the chemo schedule. Go Ingrid!

Monday 30 April (from Greg) Yay! I'm home. Thank you so much to everyone for the love, calls, flowers, visits, and support you provided me, Ingrid, and Eli this week. It is so wonderful to have such an extensive and caring network of folks who care for us. Special thanks to everyone who helped on the home front and all the university folks who quickly made my responsibilities there disappear while making sure that the students did not miss out. THANK YOU ALL!

So, OK, this was more than a bit scary, but the prognosis is good. I'm able to read and write and apparently think pretty normally, although my attention span is shorter than usual. The stroke was apparently small an in the cerebellum, which controls coordination. So I'm in a continuous stake of "woozy", and when I turn my body or my head the world tends to keep moving even after I stop. I need to make sure to keep a good centered stance (no DUI walking for me!), and there are some curious activities that are affected. For instance, my left hand doesn't respond as quickly as my right hand when I'm typing, so I keep juxtaposing letters when I type (unless I slow way down). Fortunately, both the arterial dissection and the stroke damage should heal themselves over the next couple months, with a little help from anticoagulants. I should be back to pretty much normal by this summer, except I won't be able to play rugby or do bungy jumping any more.

Ingrid was such an incredible hero through this, coming to my rescue in the bus stop as the world spun in 3 (or more) dimensions at once, then went on to go through round seven of chemo, while making sure Eli was taken care of. What a hero! Hard to imagine worse timing for something like this, but I can't imagine a better partner than Ingrid with whom to go through it.

Time for some resting.

Ingrid would like to spread the word that she has not checked email for over a week (and that she'll be very slow in catching up). She's had her hands more than a little full.

Sunday 29 April (from Ingrid) Greg is steadily improving and should be coming home from the hospital tomorrow; we can't wait! Greg is looking forward to being unhooked from the IV, to home-cooked food, and to the freedom of roaming around a slightly bigger fish bowl (he says his butt is sore). He is already able to do most things for himself, just slower than normal. Within a month or so he should even be able to drive again. With the help of friends, Eli and I went to see Greg in the hospital both yesterday and today. A gorgeous aroma of flowers floats out into the hall from his room--I'm sure he is the envy of his ward. He looks well rested, and over the weekend he has enjoyed a steady stream of visitors and phone calls. Tonight he reported to me that he had also managed to clear all the backlogged emails from his inbox...between reading sections of the Sunday Times. In typical Greg fashion, he seems to have made good use of his hospital stay. When Eli lets his guard down, he is showing signs of emotional stress. He cries easily and in public places is even more shy than usual. Leaving the hospital yesterday, we were talking about how rare it is to have the kind of attack Greg experienced. Eli asked me, "And what would happen if both of you got that at the same time? Where would I go?" After I caught my breath again, I felt fortunate to be able to name for him all the friends and family members who would be there to take care of him. That conversation ended with Eli's saying happily: "Aren't we lucky to have so many people that love us!" Watching Eli deal with these difficult issues has been very painful for Greg and me. If only there were a way to shield him from all of this. Since Greg's attack, I find myself waking up early in the morning obsessed with one thought: "I will not leave my child an orphan." I try to harness this thought, which comes from a place more of anger than of fear, to eliminate all cancer cells from my body by sheer force of will.

Friday 27 April (from Ingrid)
Yesterday we got more information from a CT scan and an MRA. Greg's vertebral artery dissection did lead to a stroke. Fortunately it was in the cerebellum, and the effects are not cognitive. He has trouble walking straight and will need a period of recovery before he gets his coordination back. It will take longer than we thought for him to be back to his normal activity level. Because his artery needs to heal, he has also been told that he must avoid any sort of rapid uncontrolled movement for at least the next four months--no more funky dancing.

Poor Greg has been a real champ through all of this. He is receiving heparin by IV and is being switched slowly over to coumadin, another blood thinner. He is wearing a collar to keep his head steady. Now that he is out of the worst danger and out of pain, he mostly feels bored and frustrated at being stuck in the hospital. Yesterday he even asked for his computer. Greg would welcome (short-ish) calls either on his cell phone or through Dominican hospital, 831-462-7700: ask for room 2311.

Meanwhile, I am walking down the tunnel of chemo #7. Yesterday was awful but I'm already doing quite a lot better today. Greg and I both feel a deep sense of distress that we cannot support the other one in this time of crisis. Meanwhile, Eli is holding the family together.

Wednesday 25 April (from Ingrid)
Finally, an MRI last night and a diagnosis this morning. Greg has a vertebral artery dissection. This is an extremely rare (5 in a million) and serious condition that involves an invagination of one of the main arteries to the brain. 10% of the people who have an episode of this die on the spot; the others have a very good prognosis. Greg will be in the hospital for 4-6 more days while they give him heparin and do frequent blood work. Right now they are trying to ensure that he doesn’t form a blood clot near his brain, but it sounds like he is out of immediate danger. I believe that after a few more weeks of rest at home he should be back to normal.

It has been terrifying to absorb the news of how close we came to losing him; I am glad I did not realize it at the time. I have been so full of adrenaline (and steroids) today, I have been buzzing around like a bee; I am waiting for the crash. I went to see Greg in the hospital this afternoon, and he looked good. He still can’t move his head freely but is feeling much more like himself. He can read and watch TV, and he hopes to be allowed to have solid foods tonight.

Tuesday 24 April (from Ingrid)
Still no diagnosis for Greg, and he still has not been taken in for an MRI. His vertigo, visual symptoms, and numbness have improved markedly, but he is fuzzy and sleeping much of the time.

Eli spent last night at Fiona’s house, and I came home from the hospital at 11pm to rest up for my chemo. I spent an hour with Eli at breakfast before school, so that he wouldn’t feel entirely abandoned. Tonight was Eli’s “Family Appreciation Day” performance at school. Originally I was going to miss it but Greg would be there; with Greg in the hospital I felt I absolutely had to go no matter what (it is amazing what you can do when you must rise to the occasion). And I’m glad I was there. Eli was so excited and proud.
Today was my chemo #7, and friends helped shuttle me back and forth. There is so much going on that I can hardly even think about my own treatment right now. Carolyn is here taking care of us…we are so lucky that she is unemployed right now.

Monday 23 April (from Ingrid)
Today brought an unexpected trip to the emergency room. This morning, Greg was waiting for the bus and suddenly had another episode of whatever it is he had before, only worse—extreme dizziness and vertigo, headache, nausea, and numbness. He lay down on the sidewalk and, between bouts of vomiting, called me from his cell phone, cancelled his class, and called his doctor. I got him to the hospital and he was put on a gurney. Then we waited, waited, and waited. Finally we got taken inside the ER, where we were attended by a very compassionate and smart doctor. Greg’s set of symptoms was so bizarre that nobody could figure out what was going on. They treated the vertigo and nausea symptoms as well as they could, although he would still throw up any time his head was moved or he was raised or lowered. The doctor tried to get him in for an MRI, but the MRI department felt his situation did not warrant an emergency spot in the queue. Thankfully, the ER doctor felt it was important enough to push for the MRI and other tests, and at 8pm they admitted Greg into the hospital until they figure out what’s wrong with him.

Sunday 22 April (from Ingrid)
Greg is doing much better; his symptoms have dulled down to an intermittent headache. None of his medical tests so far have indicated anything too scary; he meets with a neurologist next Friday.

Yesterday, I engaged in some major retail therapy...at the garden store. Knowing what happens when we forget to water our plants in the California summer, Greg looked at the gorgeous hanging fuchsia I brought home and said: "Hope spring eternal!" I decided that hope springing eternal was probably something to be proud of at this time of my life. We played in the garden most of the day, planting and weeding and watering and fertilizing. Isn't it therapeutic to handle living things? It does seem to bring out the hope in one.

Wednesday 18 April (from Ingrid)
Greg's freak symptoms look like they are probably caused by a pinched nerve, possibly aggravated by a bone spur on one of his vertebrae. He is managing to keep up his teaching but is still undergoing different tests and will meet with a neurologist next week. Ummmm....hard to know what to say about this except that we'd like to put in a request for no more medical emergencies, thanks.

I started feeling better again on Sunday and then, like clockwork, yesterday I caught another cold from Eli. My system feels worn out, so I am treating this virus with more caution and resting at home to make an honest attempt at getting better. Nowadays I am really starting to "look like a cancer patient," with my yellow flaky skin, tired eyes, and bald head. My eyebrow hairs can now be counted individually (not that I want to know how many there are!). These are days of averting one's eyes when walking by a mirror. On the bright side, in another month, mitosis will be back on my side again!

Friday 13 April (from Greg)
Ingrid's post-taxol cycle has been pretty similar to the last one. A day or so of steroid buzz, followed by a crash into deep fatigue. She's learned to just go with it and spend Thursday and Friday in a slug state with novels and videos and brief walks. Jane Austen has been a very good friend the last couple weeks.

Unfortunately, Ingrid had to spend some of her Thursday reshuffling Eli-care arrangements while I went to the doctor. Wednesday night I turned my head and felt a click in the back of my neck that led to all sorts of unpleasant and persistent symptoms. The most likely cause was a piece of bone that chipped off a vertebra and pushed against a nerve, but I'll be following up with a series of tests over the next week to be sure. In the mean time, I'm on vicodin, which means no driving and even less focus than I can usually muster. Kerstin and Fiona have come to the rescue for taking care of Eli (yay for extended families!) and grad students for taking care of me. Thanks to everyone!

Monday 9 April (from Ingrid) Happy Easter! I predict that we will be playing Hide-Eggs-Find-Eggs for many days to come. Incidentally, this is the first Easter in 40 years in which I resemble an egg. We are getting better from our colds, just in time for Chemo #6. There are some interesting things about getting taxol treatments. One is that people often have allergic reactions to taxol (or the compounds it's infused with), and so the doctors give you steroids to numb your immune system the night before your I.V. Last time I went in, my doctor basically said "You look awful!" and listened to my chest, looked in my ears, etc., to make sure I wasn't sick with some scary virus. But the only thing wrong with me was that I had been up most of the night with a steroid buzz. This time around I am planning to make insomnia work for me and at least try to get caught up on my email, if I have this problem.

Thursday 5 April (from Ingrid)
Greg and I are now both sick with bad colds. This is the sixth preschool pathogen I've had since starting chemotherapy. I am lucky that so far these various illnesses have not delayed my treatments, but it is always a worry. Greg is back into full-time teaching at the university, juggling a very hectic schedule. We are both nervous about how we will handle childcare emergencies and other contingencies for the next couple of months. The meals and offers of babysitting help have been especially appreciated lately.

Eli is still his same old self. He has been thrilled by the company and attention he gets when new people come to dinner on Mondays and Wednesdays. If you have any interest in wooden trains or his electronics set, he could not be a more cheerful host. His latest passion is drawing flowers (and, specifically, counting their petals etc.). I'd like to say we aren't responsible for this expression of environmental nerdiness, but you wouldn't believe me anyway.

We do worry about him though. Whenever news about Elizabeth Edwards comes on the radio, we discreetly turn it off as quickly as possible. Eli still does not know that people die of cancer, or that sometimes it is incurable. We try not to talk about, or even think about, these things.

Tuesday 3 April (from Ingrid)
I've now gone through my first Taxol round, and, as hoped, it was much better--much less nausea, many more moments of energy and clarity even during the "bad week." The sun came up on Sunday, bringing with it energy and physical comfort like an April fools' joke. Yes! I felt good on a Sunday! Thank You God! Woo hoo!

Easter is one of my favorite holidays. I think this has put me in an insufferably good mood.

I have been having trouble prioritizing my daily walk--when I feel crappy I don't want to do it, and when I feel good I have a compulsion to work instead. However, yesterday I was in the neighborhood of West Cliff Drive (see photo Jan. 24), so I took my walk by the ocean. Sun sparkled on the dark water, flocks of seabirds careened around, flowers were everywhere, and my heart was walking 20 feet above my head. Life is grand.

Monday 26 March (from Ingrid)
I can't believe that two weeks has already gone by; this time my "good week" seemed very short. I feel tired and not particularly ready to go back .

Last week we visited the radiation oncologist for the first time. The conclusion that we have all come to is that I do need to go through radiation. This is something I had been hoping to avoid, until we stumbled on a very recent analysis of a clinical trial showing for the first time that people with my specs do benefit substantially from radiation. On the bright side, it is nice to have one more weapon in my arsenal. On the down side, this is going to totally mess up our summer plans, including our research projects in Panama (Poor Greg continues to run his major NSF grant by remote control). We are still reacting to this news and trying to figure out how to structure our plans so that at least Greg and Eli can have a good shot of the tropics, and I can maximize rest and recovery. One of the lessons of cancer, I suppose, is learning to roll with the punches.

I wanted to let you know that the birds are still with me. A long time ago I described how, when I am feeling full of loneliness or despair, I imagine the thoughts and prayers of friends flying to me like birds. These bird-thoughts bring me comfort and a sense of peace. The idea of the birds has resonated with many people, and I have received encouraging notes from many who pledged to send me birds--sometimes they tell me stories about birds that are particularly special to them. I love imagining this diverse flock of birds, reflecting the wonderful, diverse group of people I am lucky to know.

Thursday 22 March (from Ingrid)
Half-way there! It is great to be through the worst (and a Bad Worst, for sure) of chemo 4. I am now done with the adriamycin-cytoxan part of my chemo regimen and am heading into the taxol part. That should mean that the nastiest nausea is over, and now it's just the long-distance slog through fatigue. Taxol has some other side effects (peripheral neuropathy, bone aches, and some other weird ones), so I have to wait and see how those play out...but I am very hopeful that it's going to get better. Woo hoo!

I am LOVING the great music you have been sharing with me. It has lifted my spirits more than I can express in words.

Saturday 17 March (from Greg)
After an encouraging start, the nausea came back and Ingrid has been even more wiped out than usual. She had a busy morning Friday (congratulations Sarah on passing your quals!), and then headed straight to bed. She's been drifting in and out between sleep and escape novels ever since, unless forced to go for walks, eat a bit, or read the Comic News. After a couple days of pushing too hard she now seems to be taking it pretty easy.

Eli went for a long play-date with Fiona today. Besides keeping household energy levels down, Eli and Fiona were really missing each other. Between illnesses at the Fiona household and Eli's trips to the snow and grandparents, they've hardly had any quality time together for several weeks. Our extended family is such a joy!

Thursday 15 March (from Greg)
So good to be passing the half-way mark. Ingrid has been doing better than usual with the nausea this time around, and after a very low energy day 2, this morning she had an unusual spurt of energy. Of course she then tried to do too much and ended up worn out and feeling sick. Fortunately she's back curled up with a candy novel and laying low. Eli and I are heading off to play with friends at the beach to help keep the household energy level low.

Monday 12 March (from Ingrid)
It was a gorgeous day in Santa Cruz, and I celebrated feeling good with several walks in the bright sun. Tomorrow I go back in for chemo round 4, the half-way mark.

On my bad days even a short walk can be a struggle, but my iPod keeps me moving forward. I have a playlist of "inspiration songs," a crazy mix of different genres that only have in common that they lift my heart (some examples: "All that we let in" (Indigo Girls), "No mirrors in my Nana's house" (Sweet Honey in the Rock), "Caminando" (Blades), "Stand" (R.E.M.)). I have so appreciated everyone's book suggestions, the other day I thought maybe I should ask you to think about songs that would help lift my spirits on my cancer walks? They can be mellow and introspective, or they can be upbeat and fun, as long as it's the kind of music that expands your soul.

Thanks for thinking of me.

Friday 9 March (from Ingrid) We just got back from the most wonderful trip to the Sierras. For months, Eli has been asking to go see the snow again, and we decided that we all really needed a vacation. So we packed up our hats and mittens and drove to Sorensen's, a small resort near Tahoe where for two summers long ago I had worked serving meals and cleaning cabins. There were still several feet of snow on the ground, and the mountains were a winter wonderland. We went sledding, made snow angels, built snow sculptures including a life-size Eli (anatomically correct--his idea), ate home-made sno-cones, and did every snow-thing we could think of. Our favorite activity was scrambling up the mountain behind the cabins and then sliding down the steep, snowy rock faces on our butts. Despite the altitude I felt good (thankful to have had my anemia treated), and it was delightful to breathe the cold, fresh air. We laughed so much, I'm sure that between that and sitting in the mineral water at Grover Hot Springs, I must be on the road to recovery.

Tuesday 6 March (from Ingrid)
Let's just say I'm glad the third round is over. I felt a lot of nausea again this round. I know some of it is "just in my head" because some days all I have to do is look at my medicine bottles and I feel sick. You'd think that someone who is a hard-headed scientist would be able to simply think these feelings away, but somehow it doesn't work that way. A friend recently told us a funny story about a woman who, ten years after recovering from cancer, ran into her oncologist and threw up. Anyway, I got through the worst days by sleeping, reading, and watching a Jane Austen video marathon (Emma, Sense and Sensibility, and the wonderful 6-hour A&E version of Pride and Prejudice). On the bright side, this round I got treated for anemia, and that seems to have greatly improved my energy level now that I'm starting to feel better.

Over the weekend Greg and Eli flew to visit Greg's family in Claremont, giving me some quiet time. They helped Greg's dad celebrate his retirement and spent time with Grandma, who is doing much better. Eli felt some anxiety over leaving me behind, but it was great for him to get lots of attention from extended family (and his dad too).

I have discovered the magic of massage during chemotherapy, and, after a visit from my amazing massage-therapist friend Kim, can highly recommend it to any friends you have going through cancer treatment. It was such a relief to feel good in my body that I started to cry. I realized how little I have wanted to feel connected to my body over the last three months.

Wednesday 28Feb (from Greg)
Ingrid had round 3 of toxic soup yesterday. She finished it a bit fuzzy, but initially in much better shape than the last two - feeling good enough both to go to her support group for an hour and then a late lunch of mole! Perhaps the pre-chemo massage gave her that extra boost. Unfortunately, it didn't last long, and the fatigue, hyper-smelling, nausea, and fuzzy curtain kicked in after a few hours. The anti-blech medications help a lot, but she's certainly not having much fun. Escapist novels, humorous videos, sleep, walks, and effective pharmaceuticals really help her forget about feeling awful for chunks of time. In any case, she'll be pretty much disconnected from email and such for the next 5 days or so, sleeping and seeking quiet escape.

Unfortunately, Ingrid had one University obligation today she felt she couldn't miss although I almost always try to talk her out of it, this one really was important) so she spent an hour or so on campus, then we zipped over to the oncologist for her Neupogen shot, then back home for a few hours of crashing. Katy and Alden came over in the late afternoon to play with Eli and walk Ingrid until I could get home, and we had a wonderful dinner.

As always, we are all so grateful for the love, wishes, and help from all Ingrid's friends.

Monday, 19 Feb (from Ingrid)
Resurfacing! This time was a little easier but longer. This morning I decided I would like to share more details about what it’s like going through the chemo cycle…without, I hope, seeming like I am obsessing about the tiresome minutiae of bodily aches and pains.

On Tuesday I went in for my toxic infusion. By the end of my three hours at the doctor’s office, I looked like a fuzzy curtain had fallen over my face, and I was exhausted. I went straight home and got into bed, and I was grateful to go out like a light for a few hours. By that evening I was hit by the nausea. I am taking every possible medication to fight that—I get two anti-nausea meds in my I.V., I take another, incredibly expensive, pill the first three days of chemo, and take another pill every 4 hours on top of that. Even so, I really felt awful through my first chemo round. So this time around the doctor gave me a new prescription for the cannabinoid Marinol (hurray for botanical pharmaceuticals!); that helped enough so that I could forget my stomach for several hours at a time, though I experienced a nosedive during the last hour or so before each dose. For the first four days I set my alarm to get up twice in the middle of the night to take pills.

So, basically, I feel like a medicine cabinet, but I am grateful for the release from the really miserable part of the nausea.

As Greg said, Wednesday I managed to pull it together enough to attend my lab meeting and the department seminar and meet with my prospective graduate student visiting from Texas. Thursday we had a visit from Daniel Promislow, who delighted Eli and worked hard to raise my spirits. The rest of the week I mostly stayed in bed in a fog of blah. I tried to preserve my energy for moments with Eli. I would get up to play with him in the morning and get him ready for school, and then when he was out the door I would crawl back into bed and sleep for two hours. Last cycle I started to feel better on Saturday night. This time it was Sunday night. It is to be expected, but it is discouraging to note that the struggle lasts longer each time.

When I am in the chemo fog, I sink into a sea of indifference, an indifference so intense it is almost frightening. I never would have expected that I could go five days without caring even one little bit about my work or anything else. In this sea of indifference, I find that books are a small miracle. Even when I feel just awful, and I don’t care about anything in my own life, a story will draw me in and force me to care about its characters. And what a sense of relief! Thank God for writers and for the profound connection we have to each other as humans.

Speaking of books, thanks to all who jumped in with book gifts and suggestions; I now have enough anti-indifference ammo to last a long while. Movies have helped me for the same reason, and thanks to Adelia for bringing a foot-locker full of videos, and Kerstin and Bruce for their Netflix membership!

Friday 16 Feb (from Greg)
Ingrid has been doing pretty well this time around - some additional anti-nausea medication has really helped keep it under control, as long as she keeps on a regular schedule. She is really fatigued. though, and even when she is feeling well needs to rest most of the time. Her hyper-responsible sensibilities sent her to work for several hours on Wednesday (against everyone's advice, of course); she felt good about having met those responsibilities, and since then has been focused on sleeping, reading, videoing, and short walks. She's been in great spirits and the emails, cards, books, and fluttering birds sent from friends all over the world do much to keep her feeling the best she can. We extend many thanks to the wonderful folks who have brought meals, played with Eli, and generally made this week so much easier for all of us! She's disconnected from email, so please send emails to Greg through the link above - I pass all of them along to her.

Ingrid's hair, already cut stylishly short, was bothering her as it started the process of falling out, so last night we had a hair buzzing party and converted her into a very cute, cuddly, fuzzy "Mommy de peluche". Eli is still excited about having a bald mommy, any day now.

Tuesday, 13 Feb (from Ingrid)

This morning I'll be heading back for Chemo Round 2. It is nice to be going into it knowing a little more about what to expect. I am feeling upbeat and ready to do this again...one down, seven to go.

Hugs to everyone: send healthy thoughts!

Here is Eli's list of things to do with mommy when she is sick from chemotherapy: 1. Read books 2. Cuddle 3. Videos 4. Go for walks 5. Make phone calls to grandparents and friends 6. Rub head

Saturday, 10 Feb (from Ingrid)

As for the last few days, no news is good news. I started to feel better on Tuesday and Wednesday and felt practically my old self by Thursday. Eli is over his fever and flu. Greg apparently managed not to get it. Even so, poor Greg really bore the brunt of everyone's illness this week, as he was a single dad with a clingy boy for three days. Everyone at Fiona's house is sick too, so we couldn't even help each other.

Before we start feeling too sorry for Greg, though, I'd like to congratulate him on having finished a manuscript this very same week (in between watching Mary Poppins and The Little Mermaid), and also to proudly mention that another paper of his was just accepted to Proceedings of the National Academy of Sciences.

I am more tired than usual because I've been having insomnia (I think from the meds), and also I've been putting a lot of energy into a departmental meeting I led on Friday. I'm happy that's over and my blood pressure can go back down now, thank you very much.

I feel apprehensive about going back for another round of chemo on Tuesday, but at least I now know that the terrible bed-ridden stage of things will not last for four months straight. Thank you again for all the help and support, lovely cards, great book suggestions, inspirational emails, etc.

Monday, 5 Feb (from Greg)

Ingrid is getting stronger, but after our wonderful family weekend, today was not much fun. The day started with Eli waking up at 6:00 with a headache and a nightmare (dinosaurs were tossing him and Fiona around, but all the people watching thought they were just toys), followed by a 7:00 a.m. call letting me know that someone tried to spend $2,000 at DirectTV using my credit card yesterday, followed shortly by Eli's headache turning out to be stomach flu. So Ingrid was sent into exile in her office, and Eli and I spent the day watching videos, reading books, sucking on ice, napping, and cuddling. Breaks your heart to hear a 4-yr-old say "I feel so bad I just have to cry." But he was a trooper, and by late afternoon he was feeling well enough to be frustrated that we wouldn't let him just chow down on the delicious dinner Elaine brought us tonight. He's still running a fever though, so I guess we'll be watching Mary Poppins tomorrow, and Ingrid will seek less germy surroundings. Keeping her healthy so she can stay on the chemo schedule is top priority, and since she's pretty immune compromised right now, we have to be extra careful.

Thanks so much for all the great suggestions, donations, and offers of books. Ingrid asked to pass on that she is now pretty well set for reading material for a good long while. Great to have such a literate circle of friends! I'll be taking advantage of the reading too.

Sunday, 4 Feb (from Greg)

Ingrid is doing much better now. Her nausea is fading, and her energy last longer. It is great to see her spirits rising and feeling like playing again. Fortunately, despite her strong internal voice, she's managing to keep work in the distance and focus on herself. The three of us had a great walk to the duck pond yesterday, feeding ducks and coots, climbing on rocks, chasing a kingfisher, walking on top of the post fence, and playing hide and seek. Eli soaked up the "whole family" time, and then was very excited for the two of us to head out to run errands and get Ingrid some distracting novels. He's holding up remarkably well against the change of routine, although he is testing to see which other routines and rules might have changed recently. His best friend Fiona got the flu, so their usual play dates were cancelled this weekend, since it is so important that Ingrid does not get sick during chemo. Hopefully Fiona will be better soon.

Friday night, 2 Feb (from Ingrid)

Whew, that really threw me on my butt.

The first four days were way worse than I had hoped. Just tonight I'm starting to feel a little better; this is the first time I've had even a slight desire to go near a computer, or sit in a chair for that matter. I have discovered that easy novels may be my key to getting through nausea--if you have any titles you'd recommend (but nothing gory, for goodness' sake!), please email us your recommendations.

I'm definitely looking forward to feeling better over the weekend! All the best, Ingrid

Thursday 1 Feb (from Greg)

Despite our hopes, Ingrid is having a pretty rough time with her first round of chemo. Plenty of nausea (accentuated by an eclectic assortment of food smells), serious fatigue, and some headaches and other aches. The anti-nausea medication certainly helps, but it seems the most positive aspect is that it lets her (or makes her) sleep much of the time. She did get out for two good walks today, both followed by long naps. Supposedly today and tomorrow should be the tough days after chemo, and Ingrid should start feeling better over the weekend. She asked to let everyone know that she is not checking her email, or generally answering phone calls. As always, I'm happy to print out and pass on all the emails you send to my email account (ggilbert <at> ucsc.edu).

thanks to everyone who has been signing up dinners and Eli sitting and such. Your support means so much to all of us!

Tuesday 30 Jan (from Ingrid) ONE CHEMO DOWN (or at least underway)

I woke up at 5:30 this morning, and my mind could not rest enough to sleep. So I got up and sat to meditate with a candle in the darkness. I was feeling very dark inside, very upset. When I am in that mood and want to get out of it, I try to think of the strong, loving thoughts you all have been sending to me. This morning I imagined that those thoughts had wings and were flying like birds, flying to me from all across the country and the world: from Mission Viejo and Claremont, Massachusetts and Tennessee, Ohio and Washington, Michigan and Georgia, Denmark and Panama. These winged creatures landed next to me in droves, softly, on the carpet, and it felt like they huddled quietly around me and my candle like birds in a storm. After Eli went off to preschool, I felt grateful to have a little time before we went to the doctor. I played the guitar and sang some of my favorite comfort songs. But I had so much nervous energy that I finally decided to take my iPod and go for a brisk walk in the woods, which became a jog because it felt so good to move fast and to be mostly healed from my surgery. As I ran along, I had this uncanny feeling that I was being followed by my flock of birds, that they were flying behind me to make sure I was okay...and tears ran down my cheeks. I went out to the place where Greg and I got married, a beautiful little glen of maples up against a limestone cliff. I stayed there for a few minutes and reached up to the sky--half expecting to see my birds circling on the updraft.

Monday 29 Jan (from Ingrid)

Tomorrow I start chemo; I have found myself feeling very nervous over the last couple of days. I don't want to seem melodramatic, but I do feel as if I am entering a tunnel, or getting on a boat, or going off into some uncharted wilderness, without really knowing what lies ahead for me. With all the chemicals they'll be putting into my body, I may never feel physically the same again. Or I may never feel mentally the same again. Or maybe I will. Every person is different and no one can predict what it will be like for me.

We have done some nice things for ourselves in preparation for these next months. We bought a bigger, softer bed. We bought a quieter, more efficient dishwasher. My brother gave me a back rest pillow. Others have given me some lovely hats (I always loved comfy hats anyway). Also in preparation, I have cleaned up my office (if not my email, which is a disaster). I still have many unfinished projects that I was hoping to complete, but oh well. Nothing's changed there!

Greg had jury duty (!! What next?) but they excused him this afternoon, so he will be able to come with me tomorrow. We'll let you know how it goes,

Ingrid

Saturday 27Jan (from Greg)

A note to all who have been asking about my mom, Eileen. She's doing much better now, and in good spirits. She has oxygen and home and now a portable oxygen pack to be able to get out and about. Best of all, she's been smoke free for a couple weeks now. Congratulations to her!

Today the whole extended family (Fiona, Bruce, and Kerstin; Greg and Eli watched) went to join Ingrid in a pre-chemo hair cut. What fun!

From Ingrid: So, here's my new look (hair only temporary), with new "clean" silhouette

Wednesday 24 Jan (from Greg) - HOW YOU CAN HELP DURING CHEMOTHERAPY

So many of you have been asking how you can help. The emails and flowers mean so much to all of us. We've been pretty stable, but now that Ingrid is about to start chemo (Tuesday the 30th), we actually could use a hand for the next couple months (starting Monday, 5 February). In particular on Mondays and Wednesdays I have afternoon obligations that will often keep me from being home when Eli gets home, and with little time to prepare dinner. Many of you have offered to bring meals, and those days would be particularly helpful. In addition, because Eli generally needs some adult attention when he arrives home from preschool, it would be a big help for Ingrid to have some company from about 4:30 p.m. on. When Ingrid is feeling OK, spending time with her and Eli together would be great. When she is down, keeping Eli entertained would be great. Eli loves to help cook, and so involving him in food prep could work (depending on your patience) or bringing prepared food and then playing trains would also be super. Depending on Ingrid's energy levels and imunological status, having company for dinner would be great, but we may need to play that by ear. Oh, and if you or anyone in your house is sick (flu, cold, etc.), please postpone bringing food (we can always order a pizza, and Eli can hang out with Fiona). It is essential that Ingrid stay healthy to be able to complete her chemo effectively.

If you are interested in helping in this way, please check the Google Calendar button above to see which days we will need help, and if there is already someone signed up. Then, do two things.
First, click on the day you'd like to cover, and type in your name.
Second, please send an email to ggilbert <at> ucsc.edu with a phone number so that if we need to contact you, we can.

For food, please avoid pork and beef, and food too spicey for a 4-yr old. Other than that, we are pretty omnivorous. We'll keep you posted if Ingrid develops food aversions.

We may have other needs that arise, but for now this would be really helpful. Thanks so much!

Wednesday 24 Jan (from Greg) We've all had a busy week. Ingrid's folks David and Hanne were here visiting for eight days, and Eli kept them hopping with trains, books, projects, and more. Ingrid got some great family time, while also handling some professional responsibilities. She also tried to do too much, and kept tiring herself out. But we've all come to expect that of her. I took advantage of having extra adult hands around the house to get as much of my school work done as I could. It was great to have them here for a while, but I'm sure they'll need more than a few days to recover from visiting us.

Thursday 19 Jan (from Ingrid)

Has it really been a week? That must be a testament to the fact that life has been more-or-less normal these last few days. My surgeon says I'm healing nicely. I'm tired and can only be up and about for a few hours before I need to make time to rest, but otherwise I am feeling good, sleeping fairly well and only getting up once a night to take ibuprofen. I wear the equivalent of a giant ace bandage that helps me feel like everything is going to stay where it's supposed to be. I have some referred pain in my left arm, which is a good kind of pain because it means the doctor did not sever the nerve when he removed my lymph nodes. (For the first two days after surgery, I experienced an invigorating electric shock every time I moved a certain way.) Apparently all the pain should go away as the nerve heals.

Many of you have made compassionate comments about my compulsive worrying about the chemo decision: you are kind. I am still reading the daily updates from "Breast Cancer Network" to scan for any new information, but otherwise I am moving steadily in the direction of dose-dense AC/T because that is the regimen used most commonly by my oncologist (and there's no hard data to suggest that that's not as good as any other regimen being used now). I am intrigued by studies suggesting that epoetin alfa might protect your neurons against damage during chemo, but my doctor is concerned about the possible side effects of it on tumor growth...he thinks it's too risky.

I went out in the field on Tuesday with my postdoc Katrina. It was great to be out there, smelling the ocean breezes and grudgingly admiring those invasive plants. Yesterday I went to the seminar of the first interviewee for our plant evolutionary biology search. It was the first time I had been to campus since I was diagnosed, and I was afraid that I would feel exposed and uncomfortable about seeing everyone. But people were so warm and friendly and welcoming...it was okay. And I enjoyed the talk.

My parents are here visiting through next Tuesday, and it is great to spend time with them. They are taking Eli on the bus to the library, to the movies, to the park...they admire each latest invention and are an (almost) inexhaustible audience for his unstoppable banter.

So my chemo should start on Tuesday, January 30. I am planning to enjoy every day of feeling good until then.

Take care, Ingrid

Friday 12 Jan (from Ingrid)

Today I feel tired of having cancer, tired of all the decisions that need to be made and the worrying and the planning around chemo cycles. People say that every chemo patient is unique and responds differently to the treatment. I hate not knowing what to expect.

You know me...I agonize over decisions. This week I have spent so much time reading the medical literature and trying to understand the distinctions among the different chemo drugs, what they do, and what their side effects are. There are many options for chemo regimens right now (exactly which chemicals, when they are administered, in series or in parallel, at what dosages, in what order) and there are almost no data that can be used to distinguish among them. Half the people I know are on one regimen (TAC) and the other half are on a different regimen (dose-dense AC/T), and the only clinical trial out there to evaluate which is better was started in 2004. And of course, we want to know things like the 10-year disease-free-survival rate.

On Wednesday we met again with my oncologist. He is very smart and well-versed, and Greg and I are always impressed by his familiarity with the recent literature. We enjoy bringing him medical tidbits that we dig up, and he is interested and pleased when we can spring something new on him. He also isn't afraid to say when really no one knows if one approach is better than another. When I expressed to him my anxiety about choosing a chemo regime, he said, "Well, there's no rush...you could take several more weeks to think it over," to which Greg said: "Aaaaaaaaaugh!"

So right now I guess what I need most is the faith to just move ahead with something and hope for the best.

Take care, Ingrid

Tuesday 9Jan (from Ingrid)

Yay, my grant proposal is off (all 75 pages)! I feel a great sense of relief and pride. After that was submitted, I went off to my cancer support group meeting (at Womencare, a wonderful organization), and I've spent the rest of the afternoon lying in bed.

Yesterday we checked in with my surgeon, who told me sternly to take it (more) easy until my skin re-attaches to the chest wall. I had gotten a little over-excited about the post-op exercises and I filled up with fluid. Somehow, pretending to be one of those guys directing planes at the airport felt more proactive than lying on the couch watching Mary Poppins.

I guess you can never say thank you too many times...I want to tell you how wonderful and overwhelming it has been to hear from all of you...I never in a million years would have realized what a big world I have out there, and yet what a small world.

(Gingerly) hugs, Ingrid

Sunday 7Jan (from Ingrid)

We are in a bit of a holding pattern these days. I am still recovering from surgery and no plan has been made yet for starting chemo. Greg is home from Claremont, thank goodness, and we have had a visit from Carolyn, my old friend from Catalina Island, who kept Eli laughing for two days.

Recently I have been able to work quite a lot on my grant proposal, sometimes on my laptop from bed. With my very patient collaborators I am submitting a proposal on Tuesday to the National Science Foundation. I am hoping that I can keep up this momentum for a couple more days.

This morning in Sunday school, Eli was asked to celebrate the new year by thinking of a prayer for 2007. He had two. The first was for God to keep the gophers out of our garden. The second was for Mommy to get better from cancer. But he later told me he thought God was probably too busy with other people's gophers to help with ours.

Take care, Ingrid

Thursday 4Jan (from Ingrid)

Two great things happened since I last wrote. First, a very skilled and compassionate visiting nurse came and yanked out my three surgical drains. Woo hoo! Fortunately, my cancer friends had warned me this would hurt like hell...so I tanked up beforehand on ibuprofen and a double dose of vicoden, and really it wasn't nearly as bad as giving birth...

Anyway, now I am feeling much better and less irritated by the recovery process. I am still trying not to over-do things too much.

The second wonderful thing was a call from my surgeon last night saying they got back the cancer pathology report from my surgery. All the news was better than expected. The way they do these surgeries now is to do a "sentinel node biopsy" where they take out the two lymph nodes that drain first from the breast. Only if they find cancer in these nodes (and they did in my case) do they dissect out all the axillary lymph nodes. Then they look carefully at each one to assess whether it is cancerous. It turns out that only one of my lymph nodes is cancerous, which gives me a much better prognosis than we originally expected (your chance of metastasis goes up about 6% with each positive node). In addition, the cancerous part of my tumor was a couple centimeters smaller than they originally estimated from the MRI. In addition, the breast tissue showed "clean margins"--meaning there don't seem to be any nasty insidious cancer fingers growing out into my chest wall or other areas. With these results, they have downgraded my cancer status from stage III to stage II. My surgeon sounded SO happy on the phone (he had called in from his vacation to get my results). Eli and I were having dinner at Fiona's house, and Bruce, Kerstin, the kids, and I threw a little spur-of-the-moment dance party to celebrate!

Meanwhile things are going fairly well down in southern California; Greg's mom comes home today from the hospital and will be in hospice care. Greg's plan is to fly home this afternoon and he should be home in time for Eli's bed time. Eli has been loving the extra attention he is getting from our friend Beth, who stayed at our house the last two nights and took him to school today.

Love, Ingrid

Tuesday 2Jan07 (from Ingrid)

We are still moving forward on the surgery-recovery front. I am still sleeping on the couch and waking up in the middle of the night to pop pills and tend to my drains. When I am taking it easy (which ought to be more often), I am camped out in front of our beautiful Christmas tree and am surrounded by gorgeous flowers.

Illness has again cruelly touched our little family. I am sad to report that Greg's mom Eileen was admitted to the hospital yesterday with congestive heart failure. She is struggling mightily to climb out of that hole, and Greg has flown to southern California to be with her and his dad, sister, and dear niece. Our hearts are with all of them as they face this immense challenge.

Eli is also struggling to scrape together some sense of himself in all of this chaos. When I tried to reassure him that even though Greg is gone I can take care of him again now, he said: "But Mommy, you can't unload the dishwasher!" I guess his housekeeping standards are higher than I thought. I am looking forward with gratitude to the company of various friends who have offered to come stay with me and Eli while Greg is out of town.

Please keep Eileen in your thoughts, and of course Greg, who has been compelled to carry a lot of weight on his shoulders in these days.

Love,

Ingrid

Baby Eli (2003) gives the black power salute to Eileen--Feel the power, Eileen!

Monday 1Jan07 (from Ingrid)

Happy New Year! This is going to be a kick-ass kind of year. I thought that turning 40 might be disconcerting, but I didn't think 2007 was going to be quite so memorable.

It is great to be home. I am pretty comfortable most of the time (nothing a little Vicoden mixed with those giant ibuprofens can't fix) and am a few pounds lighter. I will be happy when I can have my three surgical drains pulled out, as right now I feel sort of like a bull wandering around the bullfight ring trailing those long, dangling banderillas. Greg and I have managed to stay in touch with the lighter side of this whole surgery thing. After a cancer survivor friend of mine told me the beautiful story of how she calligraphied a poem on her chest the night before her mastectomy, Greg and I imagined what we might write on my chest. "Thanks for the mammaries!" and "Boobs away!" were two favorites. If I had not been worried about distracting my surgeon, I think I would have gone with "Cancer Free Zone." I liked the idea of waking up after the loss of my breasts with just "Free" blazoned across my chest.

Thanks for the wonderful cards and messages that Greg has been forwarding (also the flowers, chocolates, baked potatoes, etc.!). We are awash in loving kindness. Simone left us with a fridge and freezer full of good food--so hold the casseroles for now...We are thinking that once chemo starts we would love to have meals brought a couple of times a week--so if you were kind enough to offer help, we will be contacting you!

Saturday 30Dec06 (from Greg)

Ingrid returned home from the hospital today, much to the delight of Eli and visiting cousin Katherine, Uncle Erik, and Aunt Simone. She is healing well and in good spirits, and needs to be reminded not to do too much. She is very much enjoying cuddling with the kids and reading or watching videos.

Security didn't want to let me back in the hospital last night, but eventually the nurses prevailed and I got to spend the night on a cot next to Ingrid, and enjoy the routine of waking up every couple hours for assorted poking and prodding. After a visit from the surgeon he said Ingrid could go home any time she wanted, but we decided to stay an extra 5 hours or so for the rest before returning home. It was great to be back home, and Simone had a great dinner ready for us all, accompanied by some super bran muffins that Grant (who catered our wedding!) dropped off at the hospital this morning. Thanks! We've got one more day to enjoy having cousin Katherine and family here.

I've printed out all the many emails we've received in the last couple days, and she was very happy to read them all.

Thank you everyone for your care, energy, and prayers. Keep them coming, and I'll continue to pass along all the emails sent my way.

Much love to you all.

Greg, Ingrid, and Eli

Friday 29 Dec 06 (from Greg)
Ingrid came through her double mastectomy today just fine. The right breast came off first with no problems. Unfortunately, on the left breast, sentinel node dissection (or actually a node next to the sentinel) turned out positive for cancer cells, requiring dissection of all level 1 and 2 axillary nodes. This is something we had all hoped would not be necessary but suspected would be needed based on one slightly enlarged lymph node. We’ll know more about how many nodes were cancerous in about a week, and see where treatment takes us.

The hours between arriving at the hospital and going in for surgery were much longer than the clock suggested, but we passed them talking, joking, and enjoying a visit from her friend and minister Heather. Greg waited in the waiting room with Snoopy during the four hours of surgery. Nurse Doug and the recovery room nurse came out with much appreciated updates at intervals. .
Eli spent the day playing with cousin Katherine, Uncle Erik, and Aunt Simone who valiantly drove up from Southern California last night. Best friend Fiona and her parents 'Daddy' Bruce and 'Mommy Kerstin' came over and the whole extended family spent much of the day playing and getting to know each other. It is wonderful to have such great support.

Ingrid will probably spend two nights in the hospital, then head home to recover. Chemo should start in about two weeks. Katherine and family will stay until the 1st to entertain Eli and free up Greg to spend most of his time at the hospital, zipping home now and then to check in.

Thanks to everyone for all the supportive emails and cards. The best way right now to convey your love and support for Ingrid are through emails to Greg (ggilbert <AT> ucsc.edu) who will pass them all along. Positive healing energy sent through the ether is much appreciated, as well.

28 December (From Ingrid)

Thanks to all of you for your prayers and thoughts. Every morning when I wake, before getting out of bed, I stretch out my arms and imagine collecting from the universe all the prayers and loving thoughts sent to me in the past day. I imagine collecting them into myself and concentrating them to heal my cancer. I imagine them filling me with peace and love.

I have to say that the worst part of this whole ordeal so far has been dealing with the insurance company and the medical bureaucracy. It has been awful. Although I am scheduled to have surgery tomorrow, we still don't know how much the insurance will cover, and until this morning we didn't know whether they would authorize half of the procedure. My (dear and esteemed) surgeon is not part of the HMO and I was supposed to meet with a different (HMO-approved) surgeon this afternoon just in case some terrible financial news came down the pike this morning (doesn't this sound crazy?). Thank goodness, I just got off the phone with the surgeon's office and it sounds like things are going to go through after all, albeit with some greater-but-manageable financial burden. All this business has taken my energy away from the places I want it to be...psychologically preparing for this surgery and the treatment that will follow. Greg is encouraging me to try to disengage from this whole aspect of things, but it is hard. As you know, I hate uncertainty.

So it looks like I will be in surgery tomorrow (Friday) starting at 1:00. It should take about four hours, maybe more. I should be able to come home from the hospital on Sunday the 31st; I anticipate needing a lot of rest and quiet in the hospital and for a few days following. Greg says he will communicate to me any messages you send him by email, ggilbert <at> ucsc.edu. My brother and his family will be here taking care of Eli through the first, and we are relying on Fiona and Eli's high-spirited cousin Katherine to keep him worry-free.

Please keep me in your thoughts on Friday--Remember a time that you were strong, and send me that feeling. If you can, light a candle for me, and think of the surgeon taking out every last cancer cell.

Hugs, Ingrid

Treatment game plan: After consultations with great doctors, a ton of research on cancer treatment options from books, websites, and the medical literature (what would you expect from a family of academics), and a lot of soul searching, we finally have a treatment plan. Ingrid will have a double mastectomy on 29 Dec, followed two weeks later by chemotherapy. The chemo regime is still to be finalized, but there are two good options to choose from. Ingrid's surgeon and oncologist are top-notch, and stylistically great fits for dealing with scientists.

Ingrid. As all who know Ingrid would expect, Ingrid is doing great. She very efficiently finished off her teaching and departmental obligations, and cleared the decks of a range of upcoming professional distractions. Her colleagues have been incredibly supportive and helpful in making the transition to focusing inward for a few months (this of course, is not a natural transition for Ingrid). At the same time, she's digested a ton of medical literature on treatment options, finding the answers to questions not just from some really great books and web sites, but from the clinical research. Thank you UC Library for access to all the literature! She's also found great support from other women living with breast cancer. And of course being Ingrid, except when stressed out by less-than-helpful people at the business end of doctor's offices, she retains her positive, cheerful outlook and sense of humor throughout all of it. The oncologist was a bit concerned that every time he left the room he would come back to find Ingrid and I laughing hard about something. She is drawing deeply from her intellect, the love of friends and family, her faith, and her positive and jubilant essence to keep moving forward.

Eli. Right after concern for Ingrid comes concern for Eli. For better or worse, Eli is the offspring of academics. He reminds us regularly that "I study everything". He is processing the news of Mommy's cancer analytically and thoroughly. He is clearly worried, but seems to be able to verbalize it pretty well, asking lots of questions and making pronouncements about it. He thinks the idea of Mommy being bald is pretty funny, and is talking about getting his hair cut short when Ingrid does. He reminds Ingrid regularly that "I'm going to love you even when you are sick", and reminds Greg that the two guys are going to have to do all of Ingrid's "homework" for a while until she is better. He perks up and pays close attention when the word "cancer" appears on NPR news, and tries to imagine what it will be like for Mommy in the hospital. He is understandably nervous about the whole thing, though: he is much more fragile than usual, and questions about the cancer pop out of the blue at the most unexpected times. Fortunately, we'll be able to spend a lot of family time together before the surgery, his best friend Fiona comes back from Mexico soon, and his cousin Katherine and her folks will be coming to visit during the surgery. He also has wonderful support from his teachers at pre-school, as well. Perhaps the biggest challenge for him, though, is our having to postpone a planned month in Panama, where he could spend time with his beloved nanny Mitdalys and his loving Panamanian extended family.

Greg. Greg's job is general sounding board, research assistant, doctor's visit stenographer, and all-around support person. Super supportive colleagues made shedding some professional obligations easy, and a teaching-free winter quarter means the flexibility to do what is needed, and the ability to take a leave of absence if that seems like the best thing to do. Since we've worked as research colleagues for so long, we are pretty good at sorting through complex information together very efficiently. And we can draw on our 10 years as best friends and deep love to work through the hard questions. As always, I'm totally in awe of Ingrid.