The Buddy System

Sylvia

Sylvia is the veteran of many surgeries for her heart. She’s also a breast cancer survivor. And she knows the value of exercise and its importance in recovery. She walks and hikes all over the place. She’s been coming to my house once a week for the past couple of months to walk me around. Yesterday we took a flatter route because my ankle was acting up, but we probably walked for forty five minutes. Afterward, she helped me straighten my office, mainly by giving me moral support and gently asking, “are you sure you want to keep that?” I’m always amazed at how much more energy I can put out when she’s here to inspire me. It’s the buddy system. On my own, I’m much less likely to get out and brave the elements.

Actually, this morning I was very content to lie in bed and watch the storm outside my window. I couldn’t help but be glad that I didn’t have to drag myself out of bed, get dressed and go to work. I like to say that I’ll ride through anything, but I really don’t like to ride when it’s raining sideways and freezing cold. At one point I watched the rain turn into snow, but it quickly reverted to rain again. Beth, on the other hand, decided to ride her bicycle to work. I have too many memories of being cold, wet, and miserable on a bicycle in weather like this. I know the theory that there is no such thing as bad weather, just inadequate clothing, but I remember cold gusts bearing stinging rain as I try to plow my way home on the bicycle without being blown off of it. Perhaps this is sour grapes because I’m not able to ride yet.

Chemo is tomorrow. I had hoped to be a little more energetic today, but I’m not. Each treatment knocks me a little lower. I’m so glad this is the last one.

Dreaming of Bicycling in the Future

Beth is pictured with my bicycle, which she has lovingly spiffed up and replaced the tires. David and I picked it up today from her house. I’m so thrilled to have it back and in such beautiful condition. She promises to go accompany me on rides in the spring as I get back into shape. She’s training for a very long ride so perhaps she’ll get a decent ride to and from my hous, if not exactly with me. I tend to be one of the Slow Riders of America, and I may be initially even slower than usual, but she assures me that will be okay. She’s the originator of the Slug Velo ride, so she understands slowing down for the speed challenged.

I discovered Slow Riding in Amsterdam. Everyone there rides three speed bicycles (it’s flat so one doesn’t need the fancy gears necessitated by Portland hills). Bicycles are the most reasonable form of transportation because getting around by car is a nightmare there. And everyone wears regular clothes, no spandex or gortex, and rides 8-10 miles per hour. I loved it. It was so relaxed. I had a great time riding around. One doesn’t need a shower when one arrives at one’s destination. There’s a difference between running and walking and there’s a difference between riding at top speed and riding at a leisurely pace. I’m not trying to break any speed records when I ride. I’m just trying to get somewhere and have a good time while I’m doing it. Of course, I live at the top of a fairly steep hill, so I get a workout by the time I get home, whether I want one or not. Many a time I have wished longingly that we lived in Irvington or Hollywood instead of at the top of Alameda ridge when I was pedaling home late at night after a long day.

So, my last chemo is on Wednesday. I had one really good day this past week but I’ve been pretty tired in general during this “good” week. With each chemo treatment it gets a little more difficult so I’m very glad this is the last. Howard is coming home tomorrow so he’ll be able to accompany me on that fateful day.

I did have some fun on Friday night. Jonathan Coulton, my favorite songwriter, was in town and we went to see him at the White Eagle. We met Glen there, who had saved us a table. Jonathan Coulton played all our favorites. When I had my mastectomy I made a CD with all my favorite songs to be played during the operation. I had a few of his songs on it. When Skullcrusher Mountain came on, they had to stop operating for a few minutes because everyone was laughing so hard.

Things I've Learned from Cancer

The joys of eyebrow pencil, eyeliner, and a wig

I’ve recently learned about using eyeliner and an eyebrow pencil. I’ve always had dark eyebrows and eyelashes so they never seemed necessary. However, now I that I lack eyebrows and eyelashes, the application of eyeliner and eyebrow pencil helps to keep me from looking like Cancer Victim. Of course, it’s like painting an old house. Once one paints the trim, suddenly the walls look a lot more beaten up, so one has to paint those as well, and then the hall looks more dreary, so one paints that and so on. Once I get my eyes made up, then I end up putting on foundation, blush and lipstick. I've never been really good at being a girl (having tended more towards being a tomboy in my younger days) and applying make-up seemed like way too much trouble, but suddenly I have an incentive. I was so encouraged by my foray into clay sculpture that I've decided that I can treat myself as an art project. When I'm painting on concealer, I feel like I'm making an oil painting. Applying eyeline requires some skill, but I'm working on mastering it.

I can tell how well I’m feeling by whether or not I’m wearing 1) the wig, 2) make-up, and 3) the prosthetic. If I can’t be bothered with any of them, it’s probably just after chemo and I don’t care how I look. As I feel better, I bother to put on my wig when I go out. If I’m feeling good, I put on make-up. Or the prosthetic. When I’ve got all three, I’m feeling really good. However, the prosthetic has been a bit painful lately. I think some nerves are waking up in the area of the mastectomy, so I haven’t been keen to wear it.

I’ve learned a lot about diet. When I was first diagnosed with breast cancer, my naturopath told me not to eat sugar, wheat, dairy, meat, or drink alcohol. I was pretty good about following her instructions, although I’m “bad” sometimes. I’ll have a bite of someone else’s dessert instead of having a whole serving to myself. I have bread and a small glass of wine on Fridays for Shabbat. I still eat chicken, although I’ve cut out red meat. And I’m eating yogurt with two table spoons of ground flax seed added at the behest of my naturopath following the intestinal inflammation. But the one thing I’ve noticed is that I lost close to 20 pounds rather effortlessly and I think it’s mostly from cutting out sugar and wheat. It turns out that fat doesn’t make you fat. Sugar makes you fat. It raises your blood sugar level which gives your body the signal to convert that your food into body fat.

Of course, one should eat good fats as opposed to bad fats. Good fats are coconut oil (even though it’s saturated, it’s a good fat), olive oil, grapeseed oil, and fish oil. Bad fats are vegetable and seed oils (i.e. corn oil, soy oil, canola oil (yes, even though it’s a monosaturate), safflower oil, etc.) And of course, avoid all transfats (hydrolyzed oils) found in commercial baked goods and processed foods. Even butter, long vilified, is not so terrible, at least compared to hydrolyzed oils such as margarine and Crisco.

I try to eat a lot of vegetables. They provide fiber and vitamins. I prefer to eat them cooked since I’m suspicious of microbes on raw stuff, although I sometimes eat salads. (Once I’m done with chemo I’ll go back to eating more raw foods.) It’s hard to keep fresh vegetables in the house since I don’t shop as often as I like. (I used to be the most energetic food shopper in the house but I don’t have the energy keep the fridge full for the whole family). Therefore I get frozen organic vegetables and cook those for myself at lunch. I eat whole grains, but I limit my portions on those.

I used to exercise a lot, but I ate more sugar than was good for me and I could never lose the weight. Bread and white rice convert to sugar in the body, so I have to avoid them as well. I lost most of this weight before chemo, so chemo wasn’t the cause. And heaven knows, I’m not exercising much now, just a relatively short walk every day. Giving up sugar isn’t so hard, especially with the knowledge that cancer cells really like to feed off of sugar. I use stevia in my tea to sweeten it, and eat fruit (like a banana in my yogurt) when I want a sweeter treat. It works pretty well. I never feel deprived these days and my weight is staying steady with a BMI (slightly) below 23.

Adventures in Seattle

That’s Heather in the photo with me, comparing our heads of red hair. Mine is more convenient, since it comes off easily. In fact, with so many hot flashes, I rarely keep it on for long.

I went up to Seattle with Chira on the train on Tuesday to see the Howard perform in Life, A Guide for the Perplexed. I hadn’t seen it since it opened and there were many changes in it. It was a lot of fun and it was great to see people that I knew there. David was spending the week in Seattle and had a lovely hotel room at the Hotel Vintage Park so I stayed with him that night. Andrine, Howard, and Tasche came up in the morning and admired the view. I left Howard there to be picked up by the Karamazovs for the next gig in Winatchee. Andrine drove the rest of us home.

Today started out as a slow day. I couldn’t rouse myself from bed until 9 am. Sylvia came by for our weekly walk at 11 and I decided to do a long one (for me) all the way to Hollywood to the library and the post office, two and a half miles. I actually did it, without stopping (except at the library and post office). I decided to ignore the light-headedness and plug on.

After that, I went to Project Quest to meet with Jo Brody and Carla, who gave me a number of good suggestions. I’ve been worrying about my next job. I would really like to work part time, at least initially, but I need to get medical benefits. They suggested that I might work at one of the hospitals as a social worker because one can get full benefits working 24 hours per week. That sounds pretty good. They gave me a couple of numbers of people to call to do informational interviews. It gave me a lot of hope. They were also full of suggestions about workshops I could take and an upcoming conference on issues after treatment for breast cancer.

Beth, bless her heart, fixed up my bicycle, tweaked and lubed it and changed the tires. Now I’m ready for spring, should spring ever come. I can’t wait to pick it up. Just having it ready and waiting for me is so exciting. I get so jealous when I’m out driving in my car and I spot someone on a bicycle. Soon, soon……

Lots of Activity, Followed by a Slow Day

The Panets: Nigel, Gavi, Ben, Yuri, Emily, and

Shawn kneeling.

Yesterday was a very active day, but today I’m paying for it. My IBS is acting up, not badly, but it’s making itself known. I’m sure it’s a temporary situation, at least Dr. V. thinks so, but it’s making my life a little less pleasant. I’m eating cautiously and that’s helping. At least I’ve had no replay of the intense cramping that sent me to the ER.

Yesterday I went to a clay workshop at Project Quest. The idea was to make a bust of a character and then write a story about it. We made the bust yesterday. I hadn’t really worked in clay before and it turned out to be a lot of fun. All the figures were very different. One of the women there was rolling her clay around, feeling uninspired, made a few attempts to form something, then rolled it into a ball again. Finally she started sticking holes in it. I felt sort of sorry for her since I was having such a good time and she seemed so frustrated. Then I looked up and she had made this very wonderful otherworldly creature that far outclassed anything any of the rest of us were doing. The workshop was only two hours. The figures will be fired in a few weeks, then we’ll glaze them and write our stories.

Last night Gavi’s band played their gig at the Pirate’s Tavern, a vegan bar. It’s deep in the heart of the industrial sanctuary in the northwest of Portland, an unlikely spot. Glen took me there and I had herbal ice tea while he had a Dark and Stormy. We shared some appetizers and waited for the band. The stage was on a loft high above the bar, accessed by a 10 foot step ladder. It was tiny and when all six band members were finally ensconced upon it, I kept worrying that one of them would fall off. (I must be a mom.) Ben, the drummer, was well supported by his fraternity brothers, about least twelve of them, who filed in wearing paper pirate hats, provided by the establishment. Andrine, Tasche, Diane, and David filled our table and there was another large table of young people next to us who were not wearing hats.

The band played well. The set was short, over all too soon. It was great to see Gavi up there. He looked comfortable on stage and sang well. The lighting was such that I was unable to get a photo of them playing, but I made them pose for a photo afterward.

I got home by 10:30, but it had been a big day for someone in the midst of chemo. I slept in until 9 am and have been moving slowly ever since, trying to get up the energy for a walk.

The Planets are in town

My son Gavi’s band, The Planets, will be playing at the Pirate’s Tavern on Saturday (tomorrow) night. It’s a vegan, non-smoking tavern.

The address:
Pirate’s Tavern
2839 NW St. Helen’s Rd.
Portland, OR 97210

The band starts at 9 pm. They play 80’s retro music. I’ll be there. I think his band is really good and I’m completely unbiased.

Surviving

My energy was so much better today. I took a nice walk with Sylvia. I regretted not having my camera with me to take pictures for the blog, so instead I’m including a photo of a rhinoceros from the San Diego zoo. Sylvia and I even did a couple of the Alameda staircases. (My neighborhood has seven staircases going from Alameda ridge down a steep hill to the street below and often when I take walks here I try to take in a few of them.) Sylvia has been a stalwart friend throughout this process. She now makes the long trip from St. John’s to my house by bus once a week to take me on a short walk with the aim of eventually going on longer walks. Sylvia is married to Martha and together they walk and hike and do all sorts of exercise. Sylvia can easily wear me out when I’m in the best of shape. However, I’m going to work up to five miles. She has a hike planned for me when I can get to that distance.

I’ve been reading Beth’s blog and her struggle with Crohn’s disease. My IBS is temporary, but I have a lot more understanding of how devastating it can be. Beth attributes her relatively good health to exercise and I realize that if I’m going to recover from this temporary bowel inflammation, I really need to get a regular program together, not the hit-or-miss approach of late. It’s hard to get motivated when I feel really exhausted, but a ten minute walk twice a day would be better than nothing. After this last chemo treatment, I didn’t get out of pajamas for three days.

I saw my naturopath, Barbara MacDonald, this afternoon. She hasn’t gone on leave yet. I was so grateful to have another appointment with her. She’s not going on leave until late March, so I’ll be able to see her after chemo to work on recovery. I don’t know how I would I would have made it through without Barbara and Lysanji’s help.

The allopathic medical model doesn’t work for me. It seems ridiculous in its assumptions. It uses poisons to treat disease. The whole model is a reflection of our culture where we wage war: war on drugs, war on poverty, war on terrorism. (As my young friend Aster points out, terrorism is a tactic. Saying “war on terrorism” is like saying “war on bombing.”) At any rate, declaring war on your body seems crazy to me, and that’s what chemo does. I prefer the paradigm that seems to be in the works to reawaken the mitochondria in cancer cells so that apoptosis will take place, which means that cancer cells choose to self destruct instead of living on forever, multiplying unchecked. They come back into master plan. They cease to be dissonant and the whole system moves toward coherence.

I think my system got out of balance when I tried to do too much, to take on too much. I was trying to save the world and in the process lost myself. I was nurturing without taking the time to be nurtured by others or to nurture myself. I was happy enough, but frenetic.

Anyway, chemo is such a crude tool. I decided that I wanted to live and thus I needed to use every tool at my disposal even if it was the wrong tool for the job. It’s possible to dig a hole in hard ground with a claw hammer. If it’s the only tool you have, then it’s better than your fingernails. Someday soon we’ll have a better tool than chemo, but in the meantime, I’m stuck with this one. Fortunately, I have some other tools in my tool kit like diet and supplements, the tools that Barbara supplies. I rely Lysanji’s incredible ability with homeopathy for help when I need it. I also have meditation, my support group, and my mind and body group. On top of that, I have a very supportive family and a wonderful group of friends. It takes a village to heal. Chemo has been a very intense process and it’s not over yet. But I’m so grateful that it’s not the only tool in my toolbox because by itself, it wouldn’t be much help. I know I’m going to survive this thing. I can feel it deep down that I will survive and there will be no recurrence. I didn’t used to know that, but I do now.

New Diagnosis: IBS Unrelated to Chemo

The photo is of a couple of Thai monkeys

with the great pointed hairdos at the San Diego Zoo

(there's one behind the most visible one) .

Tuesday was one hell of a day. I awoke at 1 am with abdominal cramps coming in waves lasting a minute and a half, about every 6-10 minutes. I laid there in the dark next to Howard, who was sleeping, willing them to go away, but they didn’t. They only increased in intensity. By 3:30 am I was yowling in pain with each wave, and keeping Howard awake as well. He was very concerned. I was in total misery. By 5:30, since this newest ordeal showed no signs of abatement, he called Northwest Cancer Specialists to speak to the physician on call. However, he was put on hold, waiting for the answering service to respond. He tried several times in the next few hours to get through, each time with the same non-results until finally, at 8:30, he got through to the answering service. Dr. V phoned back immediately.

We had hoped to hear, “Oh, yeah, this happens all the time to people having chemo and here’s what you do about it,” but instead he advised us to go to the ER at Good Sam. I couldn’t imagine getting myself into a car and to the ER, but with Andrine and Howard’s help I got dressed, got a bag packed, and we were off.

Once there, they sent me to a triage room. I tried to stay sitting in the chair to answer questions while the waves of spasms hit me. Suddenly I felt horribly nauseous and asked for a basin. I was provided with a plasic bag with a rigid rim and proceeded to retch, even though there was nothing to bring up save foamy saliva. The triage nurse left and I no longer felt the need to keep up appearances by trying to sit in a chair. I was too exhausted. I laid down in the floor for the next wave of pain.

The triage nurse loaded me in a wheelchair and rolled me to an ER bed. My port was accessed, but it didn’t work so it was accessed again. I’m never an easy draw, even with a port. (I just took a shower and discovered that the first time, the nurse missed my port entirely. No wonder it didn’t work.) After the second access, they couldn’t draw from it, but at least they could put stuff in. The nurse drew blood out of my arm for a number of tests. They hooked me up to an IV, gave me saline, and eventually morphine while they tried to figure out what the hell was going on.

The morphine was a good idea. I could still feel the cramping, but without the extreme pain. Given my sensitivity to drugs, they gave me a tiny dose and worked up to 75% normal dose. Hmm. That 75% figure again. Anyway, now it was time to figure out what the hell was going on. According to the doctor, there were a few possibilities: a kidney stone, an intestinal blockage, or irritable bowel syndrome (IBS). She sent in the orders for a CAT scan. The good news was that I wasn’t neutropenic. I had been worried because my blood pressure was 91/38 and it tends to get low when I'm neutropenic.

The morning drifted on while I was in my morphine fog. Howard sat by my side for most of it. I was relieved to be out of pain. Exhausted by the night’s ordeal, I dozed on and off. I was given some barium mixture to drink to make my insides show up on the CAT scan. Finally, at 12:30, Howard left for home to join a conference call. Shortly after that I was wheeled to the CAT scan room. (Ah, there it was, my pram! Be careful what you ask for.) The CAT scan machine was sort of a huge square donut with a round hole in the center. It was a lot less scary than an MRI, no feeling of enclosure, hence no feeling of claustrophobia. The procedure took only a few minutes.

More time passed, then the doctor came in with her verdict. I had an inflamed section of bowel, which means I had IBS or Crohn’s disease. It’s very unusual for someone in her fifties to be suddenly diagnosed with IBS. No, it is totally unrelated to the chemo. Treatment? Well, there’s no treatment. We’ll give you a prescription for painkillers. The doctor also mentioned that Dr. V said that I had elevated liver enzymes earlier (news to me) that indicated liver inflammation. She also said that Dr. V concurred that the IBS was unrelated to chemo. She recommended that I follow up with a gastro-enterologist when I finish with chemo.

So, it’s unrelated to chemo? I spend my whole life with a great digestive system and suddenly, out of the blue, just coincidentally while I’m getting chemo, I get bowel inflammation. We know that chemo attacks any part of the digestive system, from the mouth to the anus, but this is obviously completely unrelated.

Howard and Andrine showed up around 2:30 and I shared the news. I was still hooked up to an IV. They never gave me any actual water to drink, just IV saline. Andrine called Lysanji, our homeopath, to apprise her of the situation. Andrine’s theory, which makes more sense than the doctor’s, is that my bowel got inflamed from the norovirus two weeks ago. I was in the process of healing when the chemo provided another assault on my gut. The day before the attack I had eaten a lot of citrus fruit which further irritated it. (These facts about the norovirus and the citrus fruit were given to the doctor so she might have come to the same conclusion).

Finally, after all the fluid had drained from the IV into my port, I was unhooked, de-accessed, and discharged. I went home and fell into bed. Lysanji, bless her heart, made a house call that evening. She’s the most amazing healer. She asked me all of her odd questions. When I had the pain, did I lie on my right or left side, did I curl my knees up to my chest? Things like that. After a while, she decided that there was a remedy that would be appropriate. She gave me a couple of little sugar pills and a few packets to take later on if indicated. After taking the remedy I felt immediately more cheerful and she said my face had more color.

I honestly don’t get homeopathy. Why the hell does it work so well? Little sugar pills with and herb that is so diluted as to be non-existent – this makes sense? And yet, the cramping stopped. Late last night I had some more cramps, took another dose of the remedy and they stopped.

I’m eating cautiously. I had a few strands of spaghetti and a bowl of cheerios for dinner (not normally part of my diet, but they seemed safe). For breakfast I had oatmeal. So far so good.

I remain astonished at the ineptitude of Western medicine. I guess we figured out that my bowel was inflamed. However, there was no treatment other than painkillers. And the conclusion that this episode was unrelated to chemo was ludicrous. I think I shall forgo the suggestion to see the gastro-enterologist. Homeopathy is more my speed.

Lessons in Slowing Down

The phot is of juvenile bonobos at the San Diego zoo.

It’s a gray stormy day outside. I’ve been in bed most of the day, alternately sleeping and reading the newspaper. It’s a quiet life these days. A trip to the store is a big outing for me. My biggest accomplishment today is: finishing the Sunday NYT crossword puzzle, and unimaginable luxury when I’m well and running around like a maniac.

Jasper left for San Francisco yesterday. We really didn’t have enough time with him. Gavi came back from Washington in the wee hours of the morning and I’ve yet to see him to ask him how the gig went.

Deborah called a couple of days ago with the proposal that I join her in Mexico March 7-21. I’m tempted, but my immune system is very challenged so soon after chemo. Carol pointed out that Mexico is a place to pick up all sorts of intestinal problems, something I can’t afford to do right now. Perhaps I should stick to the San Francisco plan. I truly dislike being so vulnerable. Mexico sounds like so much fun.

I continue to obsess about the job situation. I’m not finding much that intrigues me, but then again, if I did, I don’t have the wherewithal to pursue it right now. Perhaps that perfect job is waiting to appear at the perfect time for me.

Meanwhile, as brutal as chemo has been, it is nice to be able to rest for a change. I’m tired, but in a different way that I was when I wasn’t sleeping enough and jacked up on caffeine to make it through the day. By the time bedtime rolled around I was often so tired I could barely brush my teeth and change to my pajamas. Untying my shoes seemed like an impossible hurdle. I hope if I learn one thing from this experience, it is how to take better care of myself and get enough rest. I never have been able to sleep in, but that is changing. David was astonished the other day when I slept in until 9:45. Of course, that was soon after chemo, so I had some help, but still, it was a minor triumph for someone who usually springs out of bed at 5:30 after spending several hours trying to sleep but failing. I hope I can take these lessons in slowing down to heart.

Fifth Chemo

The photo is of me and Jasper at the zoo in San Diego.

Yesterday was chemo day, today was the neulasta shot. This is all getting fairly routine by now. Only one more chemo left now, on the 28th. It’s getting down to the bending end here. I’m so ready for this to be over and to resume real life.

I’ve started the job hunt. I was informed that I wouldn’t have a job past the spring. I put in my first application yesterday. I’ve been reworking my resume, searching job listings, but taking it slowly. It’s not like I’ve got the energy start a new job if it comes up soon. Still, the resume was for a county job and those openings don’t come up very often. The benefits are good, too, and at this point I need good benefits. The listing said that they will use the applications submitted during this opening to fill job positions in the next six to twelve months, so perhaps they won’t interview immediately.

Jasper is back home again now that his run has ended. Gavi’s off to Bellingham to rehearse his band and then play a gig in Seattle. He’s very excited about this gig. It’s with his band The Planets. It was very nice to have both boys under one roof, however briefly. Jasper is planning to leave for San Francisco in a few days. He has some sort of theater project in mind to do there.

I’m thinking of taking a brief trip to San Francisco at the end of March. I had hoped to go to Mexico with my friend, but she couldn’t wait for the end of chemo and is taking off this month instead. I’ll have to content myself with a less exotic destination. I just need some sort of reward at the end of this ordeal, something to look forward to. I’d like to see my friend Wolf, formerly Laura, who has been fixing up his new house in my old neighborhood. Wolf has been very good about calling and staying in touch during my treatment.

So the next couple of days are my nadir. I can feel the veil descending tonight. My face is burning, and it seems as if it’s a reaction to the neulasta. Nausea is starting to set in but can probably be fended off with a pill if I take it soon.

Back from San Diego

We’re back from San Diego. It was a brief but fun trip. The photo is of the lobby of the hotel where we stayed. That’s David standing by my trusty wheelchair. It served the function of a stroller; it kept me from getting too tired out and cranky. And it made the trip to the zoo possible.

Jasper was wonderful in the play Don Quixote at the San Diego Rep. He can really act. Michael Preston, a former Karamazov, is also in the play was also great and it was delightful to see them work together. They did a puppet show within the play with vegetables that was hysterically funny. I was really glad I made the effort to go see it.

The zoo was amazing. It’s a topographical challenge, however, for someone pushing a wheelchair and I was glad to have two wheelchair pushers, Jasper and David. One thing we didn’t know when we went was that wheelchair pushers get in for free. That was a nice bonus.

We got to see the famed Bonobos who obligingly posted themselves very close to the viewing area. The three adults lounged around in a cuddle pile grooming each other while the two youngsters climbed a pole and swung on ropes, occasionally stopping to hump each other, bonobo style. Sexual behavior starts early in that tribe. The youngsters, a male and a female, were both born in 2004.

We spent a lot of time in the primate section. There were lots of primates there I had never encountered. I especially liked a little monkey from Thailand with a hairdo that made him look like he had a pointed head.

The zoo was huge and although we covered a lot of territory, we didn’t get to see half of it. After three and a half hours I was exhausted and I had exhausted my wheelchair pushers as well. We left the zoo, had a very late lunch, then went to the hotel for a long nap. We stayed on the 32nd floor, which was the Regency Club where we had access to ample snacks that obviated the need for several meals while we were there, which was welcome since my energy was limited. Also, it had great views of the harbor. Jasper was impressed because one had to have a special key card to use the elevator to get to our floor. David cashed in a lot of hotel points that he had racked up when he was a temporary diplomat in Kyrgyzstan.

The trip was a fun escape and a welcome break from this winter of, well, if not discontent, at least discomfort. I plunge into the next chemo treatment all too soon, the day after tomorrow.

A Chicken Escapes and the Plague Finds a New Host

Andrine convinces the chicken to come home

We had a chicken escape before we went to bed last night. She was one of the new ones Andrine got last week. Tasche, on her way to school, spotted it on Fremont, about to get run over in the traffic. Tasche had to get on the bus to avoid being late to school so she was unable to catch the chicken and bring her home. She called David, who called me, who woke up Andrine. Andrine sprang to her feet, threw on her coat and was out the door immediately. I pulled on some pants and was right behind her. We corned the chicken in the neighbor’s yard. Once back at the coop, Andrine cut some feathers off one of the chicken’s wings because she was already plotting another escape. She’s currently the low chicken on the totem pole, the last in the pecking order. She’s a scrapper, so she has a tendency to get beat up by the other older chickens. It turns out that if you’re a chicken, the best way to survive is to turn the other cheek. It’s probably the wisest move if you’re a human as well.

I came down to breakfast and everyone could tell that I was much better since I was dressed and wearing lipstick. Lipstick is superfluous when one is plague-ridden. Also it was a dead giveaway that I was doing better when I was spotted chasing chickens on Fremont in the early light of day. I’m back among the living again.

My housemate Chira is down for the count with the same Miserable Plague. We played the Pollyanna Glad Game about this disease. He’s much better at it than I was during the time that I was in the clutches of it. He was glad he wasn’t friendless and penniless in a Third World country while suffering from it. I was grateful that I wasn’t caring for a small child and an infant who were exploding at either end while I was doing the same. I armed Chira with ant-nausea medicine, Imodium, and Lemon Recharge. He’s still looking pale and weak, but at last check he was able to keep some diluted Lemon Recharge down.

Sylvia came over as planned to take me on a walk. It’s so much easier to walk with a friend when one is in recovery mode. We walked for about a mile, which was a lot for me under the circumstances, but I managed it. Afterwards, I made lunch, a nice bland soup, my current specialty, using leftovers from the refrigerator. Then we cleaned up the kitchen with a bit more thoroughness than it had seen for a day or two. It was a lot of activity and my energy held out.

This all bodes well for the San Diego trip. This is my final week before chemo and I’m grateful to be back on my feet to enjoy it. The prayer below came to me via email today and it seems apropos.

St. Theresa's Prayer:
May today there be peace within.
May you trust God that you are exactly where you are meant to be.
May you not forget the infinite possibilities that are born of faith.
May you use those gifts that you have received, and pass on the love that has been given to you.
May you be content knowing you are a child of God.
Let this presence settle into your bones, and allow your soul the freedom to sing, dance, praise and love.
It is there for each and every one of us.

The Great Molly Ivins Is Dead

Molly Ivins, my favorite columnist, is dead at 62 from breast cancer. In one of her last columns she wrote: "We are the people who run this country. We are the deciders. And every single day, every single one of us needs to step outside and take some action to help stop this war. We need people in the streets, banging pots and pans and demanding, 'Stop it, now!'" It's a real call to arms and I hope we all heed it. She was funny as hell and smart and brave. Damn, but I'm going to miss her.

Day Three of a Miserable Experience

At the last posting I thought that the virus was in abeyance, but I was wrong. It picked up speed again and last night was even worse. I was told to take two Imodium after every bout of watery stool, however, that would have meant eight Imodium per hour over a six hour stretch from 1 pm to 6 am. I limited it four per hour although the package instructions warned not to take more than four in a twenty-four hour period. Hmmph. At one point I fouled my bedding and sick as I was, had to strip it and traipse down to the laundry room to wash everything, then remake the bed, mattress pad and all. While I love my bed set in its womb-like cubby, making it is quite difficult as three sides are contained. It is a humiliating experience to foul one’s own bed and seems grossly unfair. I feel like the butt of the joke, as ‘twere, courtesy of the Big Joker. Come to think of it, the rectal fissure episode made me the butt of the joke as well. What’s with all the bathroom “humor” at my expense? Other ill people get to politely cough or waste away in a delicate and vaporous way. I get to have all these inelegant anally painful or explosive experiences.

I was embarrassed to recall, far too late, that I had neglected to go to my class last night, or to give notice that I wouldn’t be there. I felt pretty dispirited about that as well. Supposedly this is a 24 hour bug but I’m on day three here. And I’m due to fly to San Diego day after next.

Howard has been very sweet, tending to my needs, supplying me with soup and Lemon Recharge. He’s been running to the store for me as needed as well. I’m trying to keep to the third floor in hopes that I won’t spread this plague around.

I attempted solid food at dinner last night which was a huge mistake. I didn’t eat much or anything that was other than bland, but it seemed to set up the next round of misery. I shall be much more circumspect in the near future in hope of being able to board the plane on Friday morning. I’m pretty weak at this point, but I can bring the wheel chair. It’s not as good as a pram, of course, but it’s a lot smaller and more portable.

Golda Dwass loaned me some novels, one of which has provided a bright spot throughout this episode, Straight Man by Richard Russo. It’s well written, well observed, funny, and provided a welcome distraction through a very unpleasant night. Thank heaven for good books to see us through rough times.

A Miserable Experience

I spent the last day or so in the clutches of a norovirus, complete with vomiting and diarrhea, a most unpleasant episode. It struck in the wee hours of Monday morning. I finally called Howard at 5 am to minister to me, rousing him out of a deep sleep. He called the doctor on call at NW Cancer Specialists who said that it probably wasn’t chemo related, that it was a virus, and I probably caught it at NWCS since many of the doctors had it as well. It’s highly contagious. What a miserable experience. I lost three pounds in 24 hours, another episode in the Glamour By Death Diet. Of course, much of it is fluid loss. I was so ill I couldn’t keep water down for a while.

I suppose I should feel fortunate that this happened before my trip to San Diego rather than during it. It’s yet another occasion to play the Pollyanna Glad Game, I suppose.

Other than this norovirus, which dominated my existence, not much else is going on. I’m about to be buried by the junk in my room. I don’t have the energy to dig my way out at present. I look forward to the day when I have normal energy.

A Lovely Morning

I’ve been working with imagery for my Body and Mind class. The classic sufi winged heart came to me with the word “courage” so I’ve been working with it and meditating on it.

This morning David and I went out to breakfast and had salmon eggs benedict, my favorite breakfast in the world. We sat and read the NYT. I had some Earl Grey tea which always reminds me of being young in England. I was in heaven.Then we went home and went back to bed with our computers and listened to Wait, Wait, Don’t Tell Me. In all, it was a great morning.

Howard and Andrine have returned from San Diego. Howard’s mom is slowing down. She has congestive heart failure and it makes her tired. She has moved from her house to a retirement facility and is enjoying the social life there. She’s not so fond of the food, but likes not having to prepare it. Howard ate with her and said it wasn’t so bad. But she’s not terribly interested in food and has lost weight. She’s down to 94 pounds, which is a concern.

It’s late so I’m going to sign off and go to sleep.

Before the Diagnosis and Now

The photo is of me and Dawn at the palace on the grounds of Kew Gardens in London last June, prior to my diagnosis (although I had already had a suspicious mammogram and had been dodging the follow-up until after my trip to London). That was a lovely day, but very hot. I was a full 20 pounds heavier then than I am now, now that I’ve been on my Glamour By Death diet plan for the last six months. This photo was taken before my life was turned upside down. Still, I wasn’t feeling very energetic on that trip and I knew that something was off, although the lack of energy was probably due to undiagnosed anemia. I was aware that I might have breast cancer and I was still under the belief that I could meditate cancer away; I was trying very hard to do so. And I was badly in need of a little rest then. The weather was very hot, in the mid 90’s, so it was a good time to laze about tropical London and take it easy and visit old haunts. I attended college in London back when the earth’s crust was warm and I have a great deal of affection for the place, and a few of its inhabitants.

It’s had to believe that the ground was covered in snow a week ago. The temperature is mild, the birds are singing, the sun is shining. It’s glorious. It’s also still January so it’s a little disquieting as well.

Howard is practicing his presentation for Havuarah Shalom this Sunday, his first since going to the training with Al Gore last month, using the slide show that Gore developed as precursor for The Inconvenient Truth . He bought a new projector yesterday and it’s quite impressive, and very portable as well.

Yesterday was a good day, in terms of energy for me. I went for a (short) walk, I went to the library, and I attended a class. I worry that I felt too good. Perhaps the dosage of the last chemo was too low. But perhaps I didn’t need chemo in the first place and I would have been in the 65% that could survive at 10 years with no further treatment. All these things swirl around in my mind continually.

Howard and Andrine are leaving for Los Angeles tonight with Petra in tow. The will visit Howard’s mother, Sophie, and then take Petra to Cal Arts, because she’s applying there. Then they will drive down to San Diego to see Jasper’s play, perhaps bringing Sophie, perhaps not. She 94 years old and may not be up to the trip. However, she’s the original party girl, so she may rally and go anyway. David and I will fly to San Diego the next weekend for a brief stay. I was definitely not up for the complicated trip Howard and Andrine had planned, and the timing was not optimal, given my chemo schedule. The trip David and I have planned is much simpler: fly in, see the play, see the zoo, or at least parts of it (I’ll take a wheel chair), stay a couple of nights at a nice hotel, and fly out again.

The class I went to was a Mind/Body class for breast cancer survivors at Project Quest. It’s a ten week class. Last night we worked on finding a healing symbol through guided imagery, then we drew it. It was a very powerful experience for me and I think I shall work on more drawings of the symbol this week. It gave me a better, clearer image to work with in my healing meditations. And yes, I’m still trying to meditate breast cancer away, it’s just now I have a few more allies, like surgery, chemo, and hormone therapy.

Feeling Better, But Not as Good as Karma

Here’s a picture of the aged beast contemplating the stairs. Note the enormous tumor on her side. She’s 16 years old; that’s 112 in dog years. We used to have another dog, Karma, who went to his reward a few years ago, or, as David says, “He feels better now.” Maggie consistently resists feeling better, despite the giant tumor, painful arthritis, cataracts, and deafness. She still clings to life, and even dances at dinnertime.

I’m looking forward to dancing at dinnertime again. While hardly perky, I’m feeling better than yesterday. I don’t yet have my brains back, however. I can tell by my impatience when I tried to read the New York Times today.

Last night was a particularly long night since I don’t get to sleep very much due to the dreaded hot flashes. I think I’m getting more used to them, however; I’m not as offended by them. I was quite indignant at first. Much of the lessons I’m learning revolve around not getting offended. For instance, it used to offend me to wait for medical appointments, especially when delays were unnecessary, stemming from the indifference of schedulers. I’ve become quite philosophical about delays now. Of course, I used to be completely overscheduled and now I have no schedule at all.

Food isn’t as problematic as yesterday. I’m even in charge of dinner tonight, with a little help from my friends. I’ll be the one lying on the couch, giving directions. Chira is doing the shopping and David will be doing the chopping. I’m taking the laid back approach to household chores. It’s important to me to contribute in whatever way that I can these days, although it isn’t much. Funny the things one misses when one can’t do them. I look forward to feeling better soon, but not as good as Karma does.

Where's My Pram?

It’s a gorgeous day. Today the Aged Beast deigned to descend the stairs with a minimum of coaxing. The garden, bedraggled by winter, nonetheless looked almost inviting. The air was warm, at least comparatively so, and the birds were singing.

In contrast, I feel like hell warmed over. I started out the day with dry heaves. I’ve been shuffling around the house in pajamas, feeling exhausted. It’s the worst day (I hope) of this treatment. I’d love to go outside, but I think it would require being pushed in a large pram. Even sitting up is too much. I’d rather be lying down at this point. My bald head is appropriate for a pram.

My room is a mess and I don’t have the energy to organize it. I have letters to write, packages to mail, projects to do, and nothing is being done. I don’t have the brain power to read so I listen to the radio or books on tape, not that I can follow them particularly well.

And it’s all so predictable. Well, it just gets better from here, at least until the next chemo treatment. Only two left. There is an end to this.

Day Two

Day Two after chemo. I dutifully got the neulasta shot, and I should start feeling the bone pain tomorrow. I was in the pink wig today, indeed, I was all pink today. I saw Dr. V. in passing and he was most impressed by the outfit and told me I should take a picture so I enlisted the Howard to take the picture above.

I went grocery shopping with Howard after the shot and then came home and fell into bed. I was pretty tired. I got up for dinner, but it was out of the question to go to my support group, much as I wanted to.

Glen sent me a link to an article about a promising cancer drug that targets cancer cells and not healthy cells. Chemo, as we know it, may become a thing of the past, that is, if someone will fund the research. It’s an existing drug with no patent, so it can’t generate huge profits for Big Pharma, hence they won’t touch it.