
Wednesday, January 31, 2007
The Great Molly Ivins Is Dead

Day Three of a Miserable Experience
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.
Tuesday, January 30, 2007
A Miserable Experience
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.
Saturday, January 27, 2007
A Lovely Morning
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.
Wednesday, January 24, 2007
Before the Diagnosis and Now
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.
Sunday, January 21, 2007
Feeling Better, But Not as Good as Karma
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.
Saturday, January 20, 2007
Where's My Pram?
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.
Thursday, January 18, 2007
Day Two
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.
Wednesday, January 17, 2007
Fourth Chemo Treatment: Reviewing the Numbers
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.
Tuesday, January 16, 2007
Snow Day
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
Monday, January 15, 2007
Welcoming This Crowd of Sorrows
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.
Sunday, January 14, 2007
Energy Limitations
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.
Saturday, January 13, 2007
Hot and Cold Running Flashes
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.
Friday, January 12, 2007
The Human Pincushion
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.
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.
Wednesday, January 10, 2007
Karmic Queries
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
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.
Monday, January 08, 2007
A Reprieve, Soup, and Living in the Future
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.
Sunday, January 07, 2007
Amino Acids, Glutamine, and Birthday Potatoes
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
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.
Friday, January 05, 2007
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.
Wednesday, January 03, 2007
Good News: No Neutropenia this time
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
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.
Monday, January 01, 2007
Feeling Better
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.