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.

Fourth Chemo Treatment: Reviewing the Numbers

Here's a picture of my bed where I spend most of my time. It's very cozy there. It's hellish to change the sheets, of course but that's the only drawback. When we first moved into this house and I was given a upstairs room as an office, I realized that it also had to double as a guest room and there wasn't room for a bed. However there was space in the eaves, so I had a hole cut in the wall and a platform put in on which to put a mattress. Little did I know how important this guest bed would become for me.

Today was the fourth chemo treatment. I was feeling pretty good, comparatively, so I felt a great reluctance to start the whole cycle all over again. I had to look at the number to reassure myself that I was doing the right thing. With a grade three tumor less than 2 cm and no node involvement, 65 women out of 100 are alive and without cancer in 10 years. Thirty two women will relapse and three will die of other causes. Adding chemo (specifically FEC) means that 11 more women out of 100 are alive in ten years. Adding hormone therapy means 16 more women out of 100 are alive in ten years. (Clearly there’s more effect from hormonal therapy.) Adding both chemo and hormonal therapy means that 21 more women out of 100 are alive and without cancer after ten years. (The benefits of chemo and hormonal therapy are not additive, unfortunately.)

It looks as if I have an 86% chance of being alive without cancer in ten years, a 3% chance of dying of other causes (some disaster arising from global warming, a bicycle accident, or World War III arising from Bush’s foreign policy all gloomily spring to mind as possibilities) and an 11% chance of dying of cancer. It’s unclear about the people who have a recurrence and don’t die within 10 years. My mother lasted 13 years after first being diagnosed with a stage 4 breast cancer. She had plenty of recurrences. However, she bucked the odds through meditation. I believe that’s what kept her alive past all predictions. I’ve certainly added it to my arsenal.

I could add another 2% to the survival rate if I had opted for a different form of chemo, AC + T, but the risk of cardio-toxicity put me off that. The last MUGA scan showed that my heart is continuing to work well, by the way.

The chemo treatment went smoothly. Because of the snow many people had cancelled so there was no waiting and I was in and out of there quickly. I particularly liked my nurse today, although all the nurses there are great. Howard was by my side the whole time. Andrine drove us there and picked us up since I’m still wary of Howard’s driving abilities. Actually, since he got his eyes repaired, he’s a much better driver (go figure) so he probably would have been fine. Anyway, we got there and back with no mishap. The temperature rose enough to cause some melting, and, typical Oregon style, it will drop tonight to make the roads icy and treacherous.

On the way back from NWCS, we were talking about the artistic process. I mentioned how much I admired Gavi’s process. He and Jasper wrote a song and after recording it, Jasper wanted to alter it. Gavi said no, let’s move on and write another song. I like that. Keep moving, don’t put all your artistic eggs in one basket. Andrine concurred. She’s been reading the Artist’s Way and had a nice quote: “The unexamined life is not worth living, but the unlived life is not worth examining.”

I’m light-headed tonight, but tomorrow will be a good day. By Friday I shall feel like a truck backed over me and by Saturday, I will feel like the truck was put into forward and ran over me again. I’ve got the drill down and know what to expect. Of course, I’ll tap for symptoms. It’s the neulasta that make my arm ache so much, but it works well when I’m not overwhelmed by an overdose of chemo so I’m more than willing to put up with it. I have no need to repeat the hospital experience.

Sylvia told me a charming story about taking her father out in the snow yesterday. Her father, Pete, is suffering from memory loss and is living in a nursing home/assisted living facility. She got him dressed up to go out for a walk and he grumbled and groused about all the elaborate preparations. However, once he was outside he was thoroughly enchanted. He didn’t remember ever seeing snow. Pete grew up in the Bay Area and didn’t see snow until he was an adult; most of his adult memories have receded entirely. “I didn’t know such a thing was even possible,” he said. He was so happy. He took a walking stick that she had provided him and used it to hit branches so that the snow would come down, much to his delight, and Sylva’s. I’m aware of the joy of re-experiencing simple joys with young children, but it turns out that one can re-experience a first snowfall with an aged demented parent as well.

Snow Day

I awoke before dawn (easy to do these days) and peered out at the white roof tops. The street lamps lit the swirling snow beneath. I ran down the stairs and saw David’s light on so I opened the door. He was awake and looking at his computer for snow closures. It was cold so I got into bed with him and we listened to the radio for news of school closures, but Portland Public Schools wasn’t among them. Still, it didn’t look like a school day to me. The snow was falling thick and fast.

We declared it a snow day long before Portland Public Schools did. It’s gorgeous out there. And quite unexpected. The weather forecast was for 40 degree weather, but it’s resolutely staying in the high 20’s today.

Sort and white, silent and peaceful. I love snow days. We all sat around in the kitchen and marveled at our good luck.

Yahoo is Evil

David just spent two hours freeing my browser from the evil clutches of Yahoo, which had hijacked my home page. I can’t believe this is a good business plan for Yahoo. We had to eliminate every trace of yahoo from my computer. I don’t know how it ever had the opportunity to hijack it since I’ve never used Yahoo, except to open mail (on Outlook) from friends who use it as an email address. I certainly will be very careful about never accessing it again and warning everyone I know about it. It’s a very evil program that it put in my computer and was almost impossible to ferret out. At first I thought it was a spy program masquerading as Yahoo, but it turns out that it was yahoo itself insinuating itself through a back door of a poorly written piece of code, courtesy Microsoft. This is one of the dangers of not being terribly geeky: one has to relay too heavily on Microsoft and an unscrupulous company such as Yahoo can hijack one’s internet explorer browser. Thank heavens for David’s persistence. I had already spent a lot of time working on the problem myself and had got nowhere.

Welcoming This Crowd of Sorrows

Beka sent me this poem a few months ago with a beautiful picture of her and her two daughters. I posted it on the door to my office, which has now become my bedroom. I pause and read it often.

Rumi - Guest House

This being human is a guest house
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still treat each guest honorably.
He may be clearing you out for some new delight.
The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.
Be grateful for whoever comes,
because each has been sent
as a guide from beyond.


I hope all the ills and torments that we endure are sweeping the way for new delights and that they are not just sent to “demonstrate the randomness, the meaninglessness of (almost) everything” as Will posits. (Will was my first long relationship, one that entailed several years and two continents. He has been a stalwart correspondent and friend through this latest cancer crisis.) Surely the worst episodes in my life cleared the way for some of the greatest joys. That is what it seems at this remove. However, I haven’t been tested as some have. I’ve been reading online the autobiography of my dear friend Deborah whose young son died in an auto accident many years ago. I have nothing to compare with that in my life. I know that the prospect of my own death pales in comparison to the prospect of one of my children dying before I do. I have no idea how I would endure that.

It’s a very narrow world that I inhabit these days. It’s so cold I’m not even bothering to get outside. My back is not surviving my dog’s old age at all well so I’ve been even more sedentary than usual. I’m in need of a bit more stimulation than this enforced omphaloskepsis can provide.
To that end, I’m planning a trip to San Diego the first weekend in February to see Jasper perform at the San Diego Repertory Theater in the play Don Quixote. It’s a bit scary, this idea of going on airplanes with all the seething humanity and their microbes. I’ll take a face mask and a wheelchair (I tire easily) and hope I won’t be detained as a bald, thin, exhausted terrorist due to the mask. I’m going down there with David. Howard and Andrine are mounting a more ambitious trip the week before that entails flying to LA to see his mother and take Petra to see Cal Arts, then driving to San Diego to see Jasper’s show.

I haven’t been to San Diego in a very long time. I’m hoping to take Jasper to the zoo there, with aid of wheelchair. It’s a spectacular zoo and I’m very interested is seeing the bonobos there. David has booked us a room at the Hyatt for free, using some of his points that he gathered while being a temporary diplomat in Kyrgyzstan. (He has some of the strangest jobs of any of us.) Assuming my health will allow the journey, it should be a welcome distraction.

Energy Limitations

I awoke this morning late (after waking numerous times during the night) and leapt to my feet, for a change. I took a shower for the first time in days, since my energy had been running low and it was so damned cold in the house I didn’t relish the thought of being naked and wet. Anyway, the thought of being naked and wet didn’t phase me this morning and I was getting a bit ripe, sort of like being on an extended camping trip, only I was home. The shower felt great and it felt fabulous to finally ditch the pajamas I had been wearing for the past two days and stuff them in the laundry bin.

Invigorated, I went to the family room, put on an exercise DVD, and waved some light weights around, did some floor exercises and stretched for a total of 40 minutes. So far so good. By this time it was 9 o’clock so I went to make breakfast, first going through the dog ritual. She was so stiff this morning that she stood on the top step shivering, and not from the cold. She was genuinely terrified to make it down the steps. I took pity on her. I sat on each step and physically helped her down to the next one. I don’t know if I’ll regret that move tomorrow. I insisted that she come up the stairs on her own, though, and she did.

After breakfast, I realized that I had used up all my energy. Despite lying around all day, I’m still exhausted. I seem to be fighting the family cold. Tasche is the latest victim: she has a vicious one and we have to share a kitchen. It’s bad timing since chemo is only a few days away. Much as I dislike chemo, I’m not interested in delaying it, and a cold would definitely delay it. More tea! More water! More naps!

I finished reading A Whole New Life by Reynolds Price, definitely the best book I’ve read about this journey of life threatening illness. His disease was more devastating than mine. He lost the use of his legs. Of course, my mother ended up in wheel chair due to breast cancer. The cancer metastasized into her spine. I know the risks of this disease of mine. However, I prefer to think that I’ll be in that 89% who survive at ten years without reoccurrence. I’m not going to hit the tiny percentages on this one.

Hot and Cold Running Flashes

Here's the hat from Merry, with the wig. It's a nice warm combination and very welcome in this cold weather. Still, I'm getting to the point that I think I look odd with hair.

Hot flashes, one after the other, have come to dominate my existence. I’ve given up tapping on them, I’m just trying to learn to live with them. The weather is cold these past few days. It never got above freezing. Prior to this chemically induce menopause, I seemed to run hot all the time and didn’t feel the cold as others do. Although it made summers unpleasant, it worked out well in winter. Now like everyone else, I get cold easily, except when I burst into flame temporarily due to a hot flash. Next I get sweaty, then cold. I’m continually taking off clothes and putting them back on. It makes sleep almost impossible. I kept track the other night and I had eight hot flashes in as many hours, although not at regular intervals. They can be 20 minutes apart or as much as three hours apart. There’s no predicting.

Ginny, my co-worker who recently went through chemotherapy, pointed out that one awakes just prior to the onset of the hot flash. I checked that out last night and she’s right. When I awake now, I immediately start shedding blankets, hat, and pajamas. By the time I have them off the hot flash hits and it’s not as uncomfortable. I’m learning little tricks. And then I put on my “Fight Cancer” tape which has a spoken meditation that generally gets me back to sleep. Ginny provided that as well when she attended my hat and earring party. It has proved to be a very practical gift.

She also provided me with a CD called “Chemotherapy” that is supposed to put a positive spin on chemotherapy but I just get exasperated when I hear the voice refer to chemo as “this healing liquid.” I can’t take it seriously. “Healing liquid,” indeed. Not when it’s put me in the hospital twice after destroying my immune system. I don’t think so. Ginny said she didn’t use that CD herself. I’m grateful for the other one, though.

I’ve also been listening to Autobiography of a Yogi which is calming. It doesn’t necessarily put me to sleep because it’s so interesting, but it’s very lovely. I first read it thirty-five years ago and it’s like getting reacquainted with an old friend.

Anhei loaned a copy of A Whole New Life by Reynolds Price. It’s the true story of a man’s bout with a very debilitating spinal cancer and his subsequent recovery. It’s a rather harrowing tale, but well written. He is writer and despite intense and horrible pain, was able to keep working through the ordeal. My various aches and hot flashes pale before such suffering. I haven’t yet finished it, but it’s the first book I have read quickly in a long time. Most I read a few pages at a time, get partway through and never finish.

It was too cold to walk these past few days. My energy was low and I didn’t exercise, which was discouraging but I’m not into forcing myself to do anything I don’t want to do right now. I’ve had enough of that for the time being. Yesterday’s adventures wore me out and today I felt like I was fighting a cold. I just wanted to lie low for a bit and read my book.

My diet has improved, though. I’ve been able to stay away from bread and chocolate, sweets and wheat. I’m sure the large doses of glutamine are helping in that regard. I’m still suspicious of uncooked vegetables, although I’ll eat fruit if I can peel it. Citrus fruit is in season so I’ve been indulging in that. I look forward to a raw food diet again when I’m done with chemo.

The Human Pincushion

The photo is of me in a wig that Merry is loaning me. She also gave me a great hat which goes well with it. I'll post that next.

Today day began at 5:30 this morning when the alarm rang. Although that is the hour at which I awaken when my life is unimpeded by a life threatening disease or its treatment, I’ve fallen into different habits these past couple of months, going to bed later and arising later, so 5:30 seemed awfully early. After lying in bed and listening to the latest disasters on the radio for fifteen minutes, I finally bestirred myself, arose, threw on yesterday’s clothes, and went downstairs. I didn’t bother with a shower. I preferred breakfast to cleanliness and I had forfeited my shower time by lying in bed.

The dog slowly got to her feet a few minutes after I entered the kitchen and limped towards me as I put on water to boil eggs and filled the kettle. Ancient and arthritic, she tottered toward me to receive her greeting. Food Woman had once again arrived in her world and the Big Event was soon to occur. But first we had to go outside for her to perform her part of the bargain. I put on the family coat, inherited from my father and at least 40 years old, an old green thing fraying at the cuffs. Thus armed against the cold, I opened the back door.

Oh, my heavens, but it was cold this morning. The cold slapped me in the face as I tromped down the back stairs. I verbally coaxed the ancient beast to follow. She expects me to carry her up and down the stairs these days but I’ve had to forgo that in the past week since lifting her caused me to injure my back. She stared at me in disbelief for a moment then slowly and painfully took the first step, then the next, and the next, as I cajoled her. She finally made it to the bottom and found a frozen piece of ground on which to squat. I then tromped to the top of the stairs and beckoned her up. She regarded me for a moment with that same air of injured incredulity, and then encouraged by the a promise of breakfast, ascended more quickly than she had descended. I rewarded her with an Old Dog Treat (ODT as we call it) of chondroitin and glucosamine in a beef-flavored square. Oh yum. She chewed that up as I spooned out the dog food. I put it on the floor and there commenced The Best Minute of the Day, that eagerly anticipated moment, and the justification of Food Woman’s existence. It’s nice to be needed, if only for my can opening and spooning skills.

I made my breakfast and ate it, all the while wondering what happened to Howard, since he was to drive me to the hospital. Finally, just as I was deciding to drive myself, I heard his footfall on the stairs and he arrived and made himself a very large breakfast. I watched the time ticking by, conscious of it getting later and later as I watched him eat. I busied myself with small projects and finally told him I’d wait in the car.

Well, of course the car was completely iced over and the scraper was nowhere to be seen. I turned on the car to warm up the windshield, grabbed a CD case and made limited progress on de-icing the windows. Howard came out eventually and joined me in scraping and finally we had scraped off enough ice to sort of see through the windshield. We got in the car and we were off.

Despite being a few minutes late, I was still the first patient to check in. I needn’t have worried about the time. They didn’t call me until 7:45 because no one gets there (except the receptionist) until at least 7:30. I don’t know why it’s so important to make patients wait unnecessarily, but it seems to be a pattern. OHSU does the same when I’m the first patient of the day. I’m learning not to take it personally. I listened to a book on tape on my media player which was calming.

I was finally called in to have an IV put in for my MUGA scan. Having been blessed with tiny elusive veins, I became a human pincushion as various nurses tried their skills at trying to start an IV. I had only the left arm to offer for the task since I’ve had a mastectomy on the right side and that precludes using the right arm for blood draws and IVs. I needed a blood draw as well, but after so many tries at the IV, the nurse who had achieved it was not about to risk collapsing the vein and so we had to access my port to do the draw. All of this was a lengthy and painful process. Howard witnessed the whole process and was having fits of anxiety. He said that he would have fainted long ago if it were he, and was quite grateful that it wasn’t. The IV finally in (albeit in a painful placement) and blood finally drawn from the port, I was sent to nuclear medicine.

The blood that had been drawn was mixed with radioactive material of some sort and then re-injected back through the IV. This procedure doesn’t sound like it’s terribly good for one’s health. I was instructed to lie very still on a very narrow table for a very long time while the nuclear scientist took picture of how my radioactive blood passed through my heart. The IV site ached the whole time. When he said that the first round hadn't worked and I had to endure another round, I was beside myself. I mentally tapped to bring the pain level down. He said my heart rate was much steadier on the second round so it was good that we did it. Another minor triumph for EFT.

This was the second MUGA scan. The first, done before I had any chemotherapy, established a base line. If this latest one shows no damage to the heart we can continue with chemo. How lovely, just what I want to do (not). The MUGA is a precaution because my mother, who ostensibly died of breast cancer, actually died from heart failure from chemotherapy. I chose a type of chemotherapy that has half the cardio toxicity of the type she had (she had AC which is still the preferred type of chemotherapy). With the type of chemo I'm doing, there's a .5% chance of heart damage. However, I seem to be good at hitting the tiny percentages so it's best to check these things out.

So I won’t know until next week what the verdict is, but I assume it will be fine. I was almost ready to bag the whole procedure after the IV episode. In one way, I’m getting more inured to medical procedures. In another, I’m getting more impatient. I'm less emotionally reactive than I was before. The nurse who finally got the IV in remarked at how nice I was about the whole thing. But I was much more ready to walk out the door and forget about having the MUGA.

The end of chemo, while a milestone, is not the end of treatment. I have five years of hormone therapy beyond that, probably tamoxifen for a couple of years, then arumidex after that. As I’ve never met a pharmaceutical I could endure, this is not a happy prospect. I used to have the illusion that I could somehow meditate myself into better health, but my mental and spiritual powers have not been equal to this disease. I’m having to put my trust in a medical system that isn’t terribly trustworthy, and that is based on a corporate rather than a compassionate model.

I was tired when I got home. I had some complicated tasks to do, trying to make a deadline that turned out to be long past, once I had done more research. Just as well, I suppose. I went to take a walk and realized I was exhausted. It was not a “good” day. I couldn’t make myself exercise, and I suppose that’s okay. This period of my life is not about discipline, it’s about muddling through until better times.

Karmic Queries

I'm beginning to really like the martian images of me with no hair. It's a bit cold to wander around completely bald, but I rather like how it looks. However, I don't think I'll keep it up once I am capable of growing hair. I look forward to having very short white hair. I'm rapidly slipping into cronehood these days, with my enforced menopause. I notice my skin losing elasticity. Enforced idleness is resulting in lost muscle tone. I look forward to the day I can ride a bicycle and lift weights again. I have been taking 20 minute walks, however, and that is helping me to feel a little less constrained.

I threw my back out carring my geriatric dog up and down the back stairs so she can pee. Just when my energy is getting better I'm sidelined with a bad back. Andrine gave me a massage yesterday and that helped, but I'm still in somewhat rough shape.

I have a few things that I’ve been thinking about lately. Of course, the big question for cancer patients is “why me?” The corollary of that question, of course, is “why not me?” I believe there are karmic reasons for this and that on some level, we chose this challenge. Life isn’t supposed to be easy. Those who have easy lives are not necessarily evolved beings, quite the contrary, in fact. Adversity is often a precursor to developing compassion, and that’s what I think it’s about.

Merry Wingfield sent me the blog address of Ken Wilber and pointed me to the excerpt below. Previous to this he talks about nearly dying after having a series of 12 grand mal seizures in a row as a result of a major illness. His is an illness that makes cancer look like a piece of cake, and yet he handles it with humor and grace.

I forwarded this in email to a young woman that I’ve be corresponding with who found my blog online. She’s a blogger herself and is facing cervical cancer right now. She just had a hysterectomy yesterday and she’s been in my thoughts a lot.

I suppose we’re burning off a lot of karma here.

Karma and Illness
By Ken Wilber
..but just let me make a few very brief points. Many people hear of situations like this, or perhaps suffer similar ones themselves, and imagine it must somehow be retribution for some horrendous crime in one's past. But keep in mind that karma doesn't mean that what happened earlier I've dealt extensively elsewhere with the concept of karma and illness-in Grace and Grit, for example, and more recently in Excerpt A of volume 2 of the Kosmos Trilogy. But it remains one of the most confused areas of understanding imaginable. I'm not going to get into it at any length herein this life is finally catching up with you; the orthodox doctrine of karma actually means something that happened to you in a previous life. According to the doctrine of karma, in this life you are reading a book that you wrote in a previous life. Many people draw the erroneous conclusion that because, e.g., they used to yell at their spouses, they now have throat cancer-but that's just not the way it works.

As a matter of fact, from at least one angle, the "bad things" that are happening to you now actually indicate a good fruition-it means your system is finally strong enough to digest the past karmic causes that led to your present rebirth. So if you were reborn-that is, if you are alive in a body right now-then you have already horrifically sinned, and unless you work it off in this lifetime, guess what? You're coming back. Illness itself does not cause more karma; your attitude towards illness, however, does. Therefore, if you are undergoing some extremely difficult circumstances right now, and you can meet those difficulties with equanimity, wisdom, and virtue, then you are doubly lucky-the causes that led to your being reborn now are starting to surface and burn off, and you're not generating any new karma while you burn them (as long as you meet them with equanimity and awareness).

I only mention this because all too often, people undergoing difficult circumstances of one variety or another add a type of New Age guilt or blame to an already difficult enough circumstance, and truly, that's not only inappropriate, it's inaccurate. If you would like to pursue some of these concepts in this more integral fashion, please check out Excerpt A. In the meantime, if you're undergoing some sort of truly difficult or even horrific circumstances, please don't kick yourself when you're down. That, indeed, would create bad karma. The good news is that you are finally ready and able to burn off the karma that led to this rebirth, and this is good news indeed-if you meet it with love and openness and a smile.


I’ve been fascinated by a book called Journey of Souls by Michael Newton for some time now. He’s a hypno-therapist who regresses people not to past lives so much as to life between lives, the bardo, as it’s known. He gets remarkable similar insights from them. When I read the book and its sequel, Destiny of Souls, it made perfect intuitive sense to me. I’ve always had the sense that this is not all there is, that consciousness, like matter, is neither created nor destroyed, and that there is an eternal soul, that living in physical body is like taking a college course. However, amnesia isn’t usually a part of the college experience, whereas it seems to be part and parcel of taking on a human form for a while. And evidently this is one of the harsher planets to reincarnate upon. I can believe that. Carol Schneidman and I refer to it as the Trashed Planed of Pain and Suffering, noting that we’re probably better off than 95% of the inhabitants and we’re still complaining. Deborah Michel contends that it has “nice beaches, horrible deaths.” So why is it that we cling to life with such tenacity? I guess that’s part of the deal and one of the reasons for amnesia. This planet is Mr. Toad’s Wild Ride (a now defunct ride at Disneyland wherein one rides in a automobile that careens from one disaster to another. I suppose the idea is to get into the spirit of the thing. No one comes out alive, though.

The next and unrelated thing that crossed my path was a excerpt from a small booklet from Dr. Hubbard’s office, the naturopath who treated my hemorrhoid, which technically was a fissure. I found this oddly reassuring because it describes just how painful a fissure can be. Aside from childbirth, fissure was the most painful experience I’ve been through. And although my first labor lasted 88 hours, 16 of them on pitocin, the fissure was much more long lasting, if not as dramatic. And definitely not nearly as rewarding. Anyway, here is the description:

FISSURE:
Extreme pain is the one outstanding feature that characterizes this disease. A hot, smarting, sickening, unbearable pain comes on during or shortly after a bowel movement and lasts from a few minutes to several hours. Rectal fissures (rather than anal fissures) are slit-like ulcers located just within the anal opening and sometimes extending the full length of the canal. It resembles a tear or crack in the skin lining. The muscles become tense and irritable, the opening tight…Even the thought of a bowel movement turns the patient frantic with the fear of the smarting, burning pain, which is sure to follow. Strong people have been know to faint at this time. The morbid dread of bowel movement causes many to put it off as long as possible. If the stool becomes hard then the tissues are torn again exposing the nerve endings lying beneath. Moderate to severe pain and bleeding usually occur with each bowel movement.

I sincerely hope I never have to relive that again. That was purely due to the chemo. Some people get mouth sores. The digestive tract can be severely affected at any point from mouth to anus. I managed to get an anal fissure. And it seemed to accompany the neutropenia both times. That fissure must have burned up a lot of karma. Reducing the chemo dosage by 25% seems to have solved that problem, though.

Dick Vasella

Life is short. Our hearing aid guy, Dick Vasella, demonstrated this fact day before yesterday when he died suddenly of a heart attack. One minute he was fine, the next minute, well, he was not with us anymore. I met Dick when I first came to Portland. He worked for some hearing aid company that I found in the phone book. I took my father there to get some sort of repair done and Dick was friendly and professional. I immediately liked him. When he left that outfit and went into business by himself, we followed him. He worked out of his house, which was the house that he grew up in. It was less than a mile from our house so it was very convenient to drive my father over there. Later, when my father became more difficult to deal with (he suffered from dementia), Dick made housecalls. I always appreciated that.

Dick was a musician, a trumpet player. He had lost hearing from standing in front of a drum for months and years on end while playing the trumpet in a band. Because of this hearing loss, he learned all about hearing aids. He was passionate about helping musicians retain their hearing before hearing loss occurred. I never hesitated to refer friends to him for hearing needs. Howard became a customer of his, and so did my housemate, Stephen.

Dick was in his fifties, like the rest of us. That’s what makes it so stunning to us that he’s dead. He had just moved his business out of his house and had hired a couple of employees. He was planning on getting married in the summer. To paraphrase John Lennon, death is what happens to you when you’re busy making other plans.

A Reprieve, Soup, and Living in the Future

Although my back is out, I had another good day in terms of energy. I managed to tap the back pain down to a manageable level, although the muscles are still seized up and I can’t stand straight all the way. I imagine it’s from not exercising. My muscles are getting weak and it’s easy with all this lying around for them to seize up. I stretched for 20 minutes today and went for a 20 minute walk, which shows just how good my energy is at present. I also made dinner. It’s so nice to have an appetite and the energy to satisfy it. I made navy been soup, a good winter dish. I’ll include the recipe below. My mother used to make this soup and this is an approximation of her recipe. This is a vegetarian version. She used to cook it with a ham bone.

My head is clearing and I can think again and read articles without getting impatient. I guess it’s the glutamine helping my liver to detoxify. I was able to write some letters today for work. Things that hitherto seemed impossible to do suddenly seem possible.

I have over a week before the next chemo treatment. It’s at this point that I feel like I’m setting up the bowling pins one by one all week, only to have them all knocked down when I get chemo. But it’s glorious for the moment to feel the fog clearing, to have enough energy to participate in household chores, to read the editorial page of the New York Times, and to take walk outside. I’m still taking multiple naps, but to be able to do these simple things is like being let out of prison.

David is in Washington D.C. on a business trip. He’s staying at some old hotel that offers to install goldfish in the room if one requests it. His goldfish is named Galileo. He spent last night with his mother and met an uncle of his for the first time. He was able to gather more scraps of family history and was pleased about that.

I got a new cell phone. It's red and small. It has all sorts of features I don't need, like an mp3 player and a video camera. I had to get it because it's red and very cute. I suppose it's a signe that I'm old now, but I feel like I'm living in the future having a phone in one's pocket that's so tiny that does all those ridiculous things like playing music, accessing the internet, and taking videos. Howard's mother is 94 and that's what she says. She says that she's just living in the future now. Except that she doesn't have a cell phone. An answering machine is about as far in the future as she'll go, as far as technology is concerned.

Navy Bean Soup

1 lb Navy Beans
4 T butter
1 Onion
2 Carrots
2 Stalks Celery
1 Bay leaf
32 oz. broth (I use a box of No Chicken Broth)
1 c water
1 t hickory smoke liquid
Salt and pepper

Put the beans in a big bowl at breakfast time and soak them. At about 4pm, dice the onion, celery, and carrots and sauté them at the bottom of a soup pot. After the onion is clear, pour in the broth and water, add the bay leaf, and the beans. Cook on medium heat for 1 ½ hours. When the beans are cooked, take about 1/5 of the mixture out and puree it. Add it back to the soup. And the hickory smoke and salt and pepper to taste. Serves six.
Because I have a big family, I usually make a double recipe.

Amino Acids, Glutamine, and Birthday Potatoes

Here's the pink hat from Heather. It's perhaps the prettiest and most feminine of the lot, and in keeping with my pink theme.

I saw my naturopath on Thursday. She was slightly appalled at all I’d been through. She says it’s unusual. Chemo usually doesn’t involve two hospitalizations for grade 4 neutropenia, for instance. My mental fogginess and extreme exhaustion shows that my liver just isn’t detoxing properly. She suggested taking a teaspoon of a base amino acid blend and 2 teaspoons of glutamine mixed in juice every day (with an empty stomach). Also, she wants me to take taurine capsule each time I do this, although I haven’t managed to locate any taurine yet.

I’ve been doing that and I do feel better. My stamina is up and I can do minor chores like emptying the dishwasher and setting the table. I made dinner on Friday. My diet is back on track again just because I can get to the store and be proactive again. I feel like fixing food that is nourishing to me instead of grabbing the easiest thing. My appetite is better. I’m meditating again. I still haven’t started back on an exercise program, though. It’s enough that I’m running (or trudging, as the case may be) up and down stairs for now.

The naturopath dropped a bombshell, though. She’s adopting a baby and going on maternity leave, probably in a couple of weeks. She gave me some referrals, but I’m feeling a bit bereft at present. She is my PCP. How inconvenient of her to have a life, to adopt a child right when I need her.

Speaking of abandonment issues, David left for Washington D.C. this morning and will stay there all week. I’ve hardly seen him lately. Howard has yet another cold so it’s a good idea to steer clear of him. Andrine has been focused on a crisis with her eldest child that has taken all her attention, and rightfully so.

Johanna P. came this weekend to take Chira (her son and our housemate) out for a birthday lunch. However, her neck seized up due to a fall down the stairs a few days ago and she experienced horrible vertigo and nausea when she moved even slightly. I felt helpless. If I’d had more energy I could have probably done some EFT to help. I did a few rounds and brought the nausea down a bit, but it was something that would have taken a concerted effort to address. I had never seen her look so down.

Even as it was, she made some banana bread while she was here for Chira’s birthday. It was delicious. David made a lovely dinner that featured a small mountain of mashed potatoes (with skin). I stuck a birthday candle in it and we sang our birthday songs. We generally start out with the Star Spangled Banner (because it’s not as insipid as the Happy Birthday song, and besides, all of us can sing in key, and Howard sings a lovely baritone part to it), then we sing the Depressing Birthday Song (“All the world is dark despair..") and then finish up with the insipid Happy Birthday song sung very fast. Chira is such and anti-materialist it didn’t seem appropriate to buy him gifts.

Chemo in Winter

Chemo in Winter

I awake to darkness this morning, another winter storm outside my window.
The wind wrestles with the trees.
They flail their branches in panic, straining to escape.
The rain drives hard against the house.
I lie naked in my bed, stripped down,
No clothes, no hair, 20 pounds lighter than a year ago,
The chemo patient, lying still,
Lying like a seed in the winter ground
Waiting for reprieve,
Waiting for renewal,
Waiting for a future I cannot yet fathom.
The old self is but a restless dream, an empty husk tossed in the unrelenting storm.
Eyes closed, body still, mind blank, the new self awaits a distant spring.

It Takes a Village to Heal

Yet another hat, this one from Beth Hamon, an excellent musician and a fellow bicycle fanatic.

Yesterday was a good day, in terms of energy. I felt fully 50% of my former self, and that’s a lot when one is used to feeling 10-20% of one’s former self. There was a lilt in my voice and a bounce in my step. It was a glimpse of what it will be like to feel well again. I went to various appointments, ran a couple of errands, and finally went to my support group at night. Usually I can do one thing a day. Feeling good made me realize just how tired I’ve felt these past few weeks. It was so easy to do things for a change. I picked up my room, I went to the grocery store to buy food for dinner tomorrow, I drove myself to my group, all things that I haven’t been able to do for a while.

So today, well, it’s back to feeling pretty tired. I suppose that’s to be expected. Good days and bad days. I was sort of hoping yesterday was the beginning of an upward trend, but I suppose I can’t expect that until a few weeks after the last chemo treatment.

Deborah gave me a fascinating present, a psychic reading. I talked to the psychic this morning. The main things I got from it: I’m going to get better, a return to joy. This is a seven year cycle, I’m on year five, past the learning curve where it’s one damn thing after another (or the same damn thing over and over again). Allowing others to take care of me is way of restoring balance. By October of 2007, I’ll be involved in a new evolution of career. It’s not time to look for a new job. By May I’ll hear the rumblings that will lead to the new position, which will lead to an improvement in my financial situation. I don’t have to look for it, it will come to me. In fact, it’s time to slow down, cultivate stillness and tap into the idea that is my purpose instead of running off in several directions at once. Just because I’m good at generating ideas doesn’t mean I have to pursue them all. The idea is to have the faith and patience to listen to what is exactly right for me. In the next three years I’ll be able to open up, to develop my ESP, to speak to others and tell them what they need to hear with timing and appropriateness. It’s not about “helping,” it’s about merging, connection, and communication.

Body is on the mend. I can look forward to a long life. Well, that’s encouraging. Maybe this will be just a bump in the road and not the end of the road. Perhaps I still have some work to do here, and much of it, for the moment, is learning about how to let others help me. That’s not an easy task, it turns out, but I’m working on it.

The EFT tapping is going well. The pain in my arm is down to a manageable level, not a 0, but at least I can sleep. And the hot flash cycles at night have decreased from 5 to 2, which means that I can get as much as 5 hours of uninterrupted sleep at a time. Last night was another good sleeping night.

Ginny, my colleague from UCLA, was just here to drop off a CD with affirmations for chemotherapy. Golda Dwass from my class at Havurah Shalom came to visit and brought me some books to read. Johanna Perkins came in the afternoon and stayed for dinner. I actually cooked dinner for Shabbat tonight, although the challah was a joint effort with Diane, who did the kneading and the braiding. I guess I’m doing better if I can think of cooking for 12. Johanna gave me a polarity massage and that felt great. I need a way to get my energy moving since I’m not exercising much.

My diet is back on track for the most part. I’ve been managing to avoid dairy, wheat, and sugar these past few days and feel better for it. It is also an indication that I’m feeling better. I have the energy to fix things and avoid easy things like chocolate and pretzels and the like. Merry brought me some wonderful soup and an African stew that has made lunches much easier.

I’m allowing others to nurture me, to take care of me, to value me, and it’s quite a lovely experience. I had already figured that out before the psychic spoke. It’s about being a human being, not a human doing. Do be do be do. Death is nature’s way of telling us to slow down. So, indeed, is a life-threatening illness.

Good News: No Neutropenia this time

I seem to be able to upload photos again so here's yet another hat photo. I'm experimenting with changing the template of the blog as well.

I got my blood drawn today and the nurse just called. My white blood cell count and my neutrophil count are in the low-normal range, which means that I won’t be going to the hospital with neutropenia. My sense of relief is intense.

I spoke to my right arm (using EFT) about taking on all the burden of producing white blood cells and suggested that it might allow other bones to do some of the work. I thanked it profusely for single-handedly rescuing me from neutropenia. It’s an NLP (Neuro-Linguistic Programming) approach to recognize and praise parts of oneself (whether physical or emotional parts) for a job well done and to find other strategies that meet the parts’ needs. It seems to have worked because the pain in my arm has diminished considerably. Now my back hurts, but that’s fine because it’s a different place at least. The unrelenting arm pain was getting old.

I also tapped for hot flashes. We’ll see how well that one works tonight. I find that I have all sorts of energy and ideas for tapping during the day, but I really don’t want to do it at night. All I want to do at night is sleep. Tapping seems to disruptive. I suppose I could imagine tapping instead, but part of the art of doing EFT is using the imagination and being creative and intuitive. In the wee hours of the morning I am none of those things. I’m peevish.

My housemate Stephen loaned me a couple of books on CD that I was able to transfer to my media player. Right now I’m listening to Autobiography of a Yogi, read by Ben Kingsley and it’s so lovely and relaxing. I love being read to. It's time to order some books on CD from the library. I so prefer listening to books over watching television when my brain (and my eyes) refuse to focus on a written page.

Hot Flashes and Other Chemo-Induced Indignities

I made it to the exalted age of 55 without a hot flash. I was easing into a late menopause (which may, after all, be the cause of my cancer since my body hadn’t slowed down at all and was being bathed in estrogen every month). I was told that chemo would bring on menopause, and indeed it has, and with a vengeance. Now I know first hand about hot flashes. My body has lost all ability to regulate temperature. Sleeping has become particularly problematic.

First of all, my right arm hurts all the time, from what I can only conjecture is bone pain from the neulasta shot. Neulasta stimulates white blood cell production in the bone marrow of the long bones. Therefore a side effect is bone pain which can occur anywhere, the hips, the spine, the joints, and the long bones, especially. However, this time it seems that my right arm has been singled out to do all the production. It aches and Advil doesn’t touch it. Oxycodone, however, works just fine. The only problem is that it induces constipation and that exacerbates the chemo-induced hemorrhoid, and goodness knows I don’t want to return to that. The arm pain, while constant, cannot in any way compare to the hemorrhoid pain. There is no point in risking that again.

Next, another chemo side effect I have to deal with is urinary urgency. I have to pee every couple of hours and if I don’t heed the first little twinge, I can end up wetting my pants. (I’m amazed at the bodily indignities being heaped upon me these days.) So, the pattern is, I go to bed, I’m cold (my office is unheated and is in the 65-67% range). I wear a hat, pajamas, socks, and am under three blankets and a sheet. Then I warm up. The hat comes off, the first blanket is flung to floor to remain there the rest of the night. Next the second blanket is peeled off to the side, then the third, then the pajama top comes off, then the socks, and finally the pajama pants. There I am, naked under a thin sheet and sweating and I have to pee. So I get up, go to the bathroom, and, being naked and sweaty, get chilled, so I get back into bed, put on the pajamas, pile on the covers, and start the whole process again. I go through at least five cycles during the night. It’s getting very tiresome. I could probably squeeze in a bit of sleep if the arm didn’t hurt all the time. I’ve tried tapping the pain down with EFT, but I haven’t managed to do so yet. Perhaps that’s something to work on during daylight hours instead of the middle of the night.

In general, I’m not keeping up with my disciplines. I haven’t been meditating lately, I’m not exercising, I’m not playing the banjo, I’m not tapping consistently, and my diet has gone to hell. I started eating bread and chocolate, my two comfort foods. I’m trying to get back on track again as far as that is concerned, but it’s a challenge. I’m very fickle about food as well. What sounds good one day sounds horrible the next so it’s hard to predict what I will want to eat. Except bread and chocolate. I always seem to want that.

I go in to NWCS today for a blood draw. Here’s hoping that my right arm has been single-handedly (pun intended) doing its job and producing enough white blood cells to keep neutropenia at bay.

The weather is wet and gloomy today, a typical Northwest winter day. I hear we’re in an El Nino cycle so we can expect more of the same. Spring seems a long way off.

Feeling Better

I suppose reducing chemo 25% helped because I felt pretty good today. I spent most of the day engaged in light activity, which is to say that I was up and moving about instead of in bed and napping all day.

Last night was the New Year’s Eve party. I managed to stay up until 11 pm, which is a minor miracle for me. The party turned out to be fun, despite the James Bond theme. Everyone looked fairly elegant. There were lots of babes and several tuxedos. I was in the babe contingent with a blue sequined dress and painful high heels. I didn’t invite anyone because I hadn’t intended to be present, at least so soon after chemo. Now I wish that I had. I was there for at least 2 ½ hours of the party. Of course, it went on until the wee hours, with people playing roulette for prizes, which were unpopular Christmas presents. Objects ranges from strangely glowing penguins to singing fish to ugly ceramic feet.

One of the big treats of the evening was to have Laurie Childers there. She lives in Corvalis, so it is a rare treat to see her. She spent the evening and was still here when Merry Wingfield stopped by to drop off a hat and earrings for me. It turns out that they are old friends so there was much hugging and excitement.

I went to Sylvia and Martha’s house today with David to admire their newly renovated house. It’s utterly gorgeous. I was so appalled when I first saw it, but they have managed to make a silk purse out of a sow’s ear. The bathroom is particularly beautiful with amazing green marble. They will add an addition with a studio apartment eventually. The garden is huge and will soon become a small urban farm. They live near the St. John’s bridge and thus are in walking distance of Forest Park. It’s truly a lovely place in a great location.