Last Tuesday a.m. (chemotherapy day) I awoke with an intense pain in the bottom of my left foot that required me to use a cane to get dressed. About ten minutes before my cousin Phil (blessed be he) arrived to drive me to the hospital, it eased enough for me to lose the cane and get to the hospital just leaning on Phil. It got better as the day went on, we did the chemo, and then went out to dinner. After dinner, I stood up and the excruciating pain was back.
Long story short, today I was diagnosed with plantar fasciitis, an inflammation of a strip of tissue at the bottom of the foot. Some chemotherapy drugs cause the plantar fascia to tighten up during the night, and then when you take your first step in the morning, you injure it. So that's probably what happened to me. Treatment is to stay off it as much as possible, ice it, ibuprofen it, and do some exercises at home. If those don't work, PT. The handout from the foot doc says symptoms should stop "after several weeks." We'll see.
I never was fond of fasciists.
Thursday, January 31, 2008
Wednesday, January 30, 2008
Boxes within Boxes
What started my current train of thought was a little round box of tiny pebbles of ocean-smoothed bottle glass from Hawaii given to me for my last birthday by friends Ken and Linda. This box was contained in another box of beechwood and inlaid mother of pearl, a reproduction of a IV-Vth century Egyptian piece, from the period when Egyptian life moved from Pharaonic to Arabesque. Marked by geometric, sometimes curved patterns, the new style made its way into art forms from building decorations to jewelry--and onto my bathroom windowsill, where it now holds the pedestrian little proxibrushes used to prevent bacteria from doing too much damage to my receding gums.
Right around my birthday, Francine presented me with a small box of rocks, this handmade of paper, with a handpainted lid and beaded handle. It was made and given to Francine to give to me by a woman named Barbara, whom I've never met, but to whom Francine told the story of my cancer, and who was moved. Francine and our friend Lynn were asked to pick some stones for me from Barbara's extensive collection. The largest is a Chinese flourite, a defending stone. Three smaller ones are garnets, to be given to people who have touched one's life. There's a blue topaz, all about calming and healing, and a moonstone, representing the Divine Feminine (Kanzeon again: see January 17).
I started thinking about how old these stones are, and how long it took the ocean to wash that bottle glass smooth on the Hawaii beach, and how interconnected we all are, and everything is throughout space and time, and the beauty of it all. Then I looked around my place and noticed all the other decorative boxes in my possession, some of which came into my family before I was born.
There's a wooden, wood-burned, hand-painted box that holds two decks of pinochle cards. On the bottom it's signed "Sofia Lanius, October 1944." There's a gorgeous silver cigarette box, intricately carved with Mayan decorations, complete with matching (and monogrammed) lighter and ashtray, from my parents' 1945-1947 stay in El Salvador, where I was conceived. There's a black laquered cigarette box brought by my father from Okinawa, where he was doing something mysterious for the U.S. government in the early 50s, sinking deeper into alcoholism, but always thoughtful, with a good eye for craftsmanship and beauty. Cigarettes and playing cards -- the McLenighans were a fun couple, until they weren't.
In my bedroom, two more wooden boxes from the El Salvador days or earlier, both beautifully covered with paper in Art Nouveau style, one holding a couple of decks of cards for bridge, another holding some silver jewelry. A handpainted oval papier mache box from Nepal, given to my mother by one of the attorneys in her office, which now contains seeds from a plant that my upstairs neighbor Michael, may he rest in peace, called "Snow on the Mountain." A handmade box from Kate holds my most frequently used jewelry; finally, two ceramic boxes from Mexico, one inherited from my beloved friend Dorothy Tollifson, who died at the age of 95 holding my hand.
In my living room there's a rectangular wooden game box with a wooden handle, presented to me by my Zimbabwe family on the trip when I first met little Gladys Valjean, then a delightful 4 years old. The box closes with a little strip of leather that slips over a tiny nail. Inside the bottom and the lid are 32 egg-carton like depressions, where 62 seeds are dispersed according to rules I never understood. The object is for one player to move all his seeds to the other side by capturing oppponent seeds--again, according to rules I never mastered but having something to do with leaving three seeds in a cup at any given time. It's a game of strategy, not unlike Go, and Martha (Gladys Valjean's mother) is very good at it.
These days probably the most important box in the house is my box of 28 pill boxes. This, too, is the Buddha, another manifestation of Kanzeon. It is industrial plastic, with seven columns, one for each day of the week, and four rows, two yellow (for morning and noon pills) and two blue (for evening and bedtime). This is hands down the least attractive box in the house, but it's functional and durable, and what can you do. It holds the chemicals that are trying to save my life, and I am grateful, if not aesthetically satisfied.
Right around my birthday, Francine presented me with a small box of rocks, this handmade of paper, with a handpainted lid and beaded handle. It was made and given to Francine to give to me by a woman named Barbara, whom I've never met, but to whom Francine told the story of my cancer, and who was moved. Francine and our friend Lynn were asked to pick some stones for me from Barbara's extensive collection. The largest is a Chinese flourite, a defending stone. Three smaller ones are garnets, to be given to people who have touched one's life. There's a blue topaz, all about calming and healing, and a moonstone, representing the Divine Feminine (Kanzeon again: see January 17).
I started thinking about how old these stones are, and how long it took the ocean to wash that bottle glass smooth on the Hawaii beach, and how interconnected we all are, and everything is throughout space and time, and the beauty of it all. Then I looked around my place and noticed all the other decorative boxes in my possession, some of which came into my family before I was born.
There's a wooden, wood-burned, hand-painted box that holds two decks of pinochle cards. On the bottom it's signed "Sofia Lanius, October 1944." There's a gorgeous silver cigarette box, intricately carved with Mayan decorations, complete with matching (and monogrammed) lighter and ashtray, from my parents' 1945-1947 stay in El Salvador, where I was conceived. There's a black laquered cigarette box brought by my father from Okinawa, where he was doing something mysterious for the U.S. government in the early 50s, sinking deeper into alcoholism, but always thoughtful, with a good eye for craftsmanship and beauty. Cigarettes and playing cards -- the McLenighans were a fun couple, until they weren't.
In my bedroom, two more wooden boxes from the El Salvador days or earlier, both beautifully covered with paper in Art Nouveau style, one holding a couple of decks of cards for bridge, another holding some silver jewelry. A handpainted oval papier mache box from Nepal, given to my mother by one of the attorneys in her office, which now contains seeds from a plant that my upstairs neighbor Michael, may he rest in peace, called "Snow on the Mountain." A handmade box from Kate holds my most frequently used jewelry; finally, two ceramic boxes from Mexico, one inherited from my beloved friend Dorothy Tollifson, who died at the age of 95 holding my hand.
In my living room there's a rectangular wooden game box with a wooden handle, presented to me by my Zimbabwe family on the trip when I first met little Gladys Valjean, then a delightful 4 years old. The box closes with a little strip of leather that slips over a tiny nail. Inside the bottom and the lid are 32 egg-carton like depressions, where 62 seeds are dispersed according to rules I never understood. The object is for one player to move all his seeds to the other side by capturing oppponent seeds--again, according to rules I never mastered but having something to do with leaving three seeds in a cup at any given time. It's a game of strategy, not unlike Go, and Martha (Gladys Valjean's mother) is very good at it.
These days probably the most important box in the house is my box of 28 pill boxes. This, too, is the Buddha, another manifestation of Kanzeon. It is industrial plastic, with seven columns, one for each day of the week, and four rows, two yellow (for morning and noon pills) and two blue (for evening and bedtime). This is hands down the least attractive box in the house, but it's functional and durable, and what can you do. It holds the chemicals that are trying to save my life, and I am grateful, if not aesthetically satisfied.
Saturday, January 26, 2008
Be Not Afraid
I've had two conversations today with friends who said they had been afraid to phone me, essentially because they're afraid of my cancer. They did phone nonetheless, thank goodness. I told them both that I'm not afraid, at least not right now. My practice is to stay in this moment, and as I have been doing that, I have noticed that there is no fear in this moment. Sometimes there is grief and sadness. Much of the time there is contentment; sometimes, joy. But there has not been any fear for two or three weeks, I think since about halfway through my first chemotherapy, when I noticed I wasn't throwing up or having any of the other dire consequences I read about in "Chemotherapy and You" and "Radiation and You."
So, friends, be not afraid. I need you in my life, and I want you in my life, and I don't want fear to keep you out, or on my side, to shut you out. In fact, I don't want any negative energy around this illness at all. I'm looking for positive, healing energy, and love, love, love. I'm very much alive. I'm just as much me as ever. And I need my loved ones, worry-free.
So, friends, be not afraid. I need you in my life, and I want you in my life, and I don't want fear to keep you out, or on my side, to shut you out. In fact, I don't want any negative energy around this illness at all. I'm looking for positive, healing energy, and love, love, love. I'm very much alive. I'm just as much me as ever. And I need my loved ones, worry-free.
Thursday, January 24, 2008
Lodat
Had a moment of panic tonight--the apartment seemed awfully cold as my meditation group was meeting (a group of 2 only tonight, the other regulars being occupied with out of town guests). I checked my digital thermostat, and there was a strange reading: lodat. Nothing happened when I hit the button that changes "program" to "manual." Nothing happened when I hit any button, in fact. Gulp. Given my recent infrastructure hobgoblins, and the temperature outdoors, I thought my furnace was going out. I have an out of town guest myself, from Dallas yet, so she is not acclimated to this weather. Turns out, when I adjusted my glasses and looked at the instructions on the back of the thermostat door, it was telling me "lo bat," for low batteries. I had the requisite double-A's in the house, and the instrux on how to change batteries were crystal clear, so we arrested the dropping temperature at the 67-degree mark, and there was no need to start looking for a hotel that takes cats. The incident showed me, once again, how easy it is for the mind to create problems where none exists. It is now a toasty 71 degrees in here, my cat Sasha is curled up in a comma in her favorite chair, and my friend from Dallas called to say she is heading home with ice cream. All's well that ends well.
My own batteries are beginning to be affected by radiation therapy (today was treatment #13 of 30). I find I get more tired than usual, and that I get tired in a different way. One minute I'm fine, and the next I'm bereft of energy, as though someone had yanked my batteries. It's taking a little longer to recharge, too. A week or two ago a one-hour nap kept me up til after midnight, and sleeping only lightly after that. Today I slept for about 1:20, and I'm pretty sure I'll sleep like a baby the whole night through. That's the only real side effect, other than the rash on my chest and back, for which I saw a dermatologist Tuesday and now have prescription cream and lotion, so it doesn't itch. I'm truly blessed, and I wish you all a warm good night.
My own batteries are beginning to be affected by radiation therapy (today was treatment #13 of 30). I find I get more tired than usual, and that I get tired in a different way. One minute I'm fine, and the next I'm bereft of energy, as though someone had yanked my batteries. It's taking a little longer to recharge, too. A week or two ago a one-hour nap kept me up til after midnight, and sleeping only lightly after that. Today I slept for about 1:20, and I'm pretty sure I'll sleep like a baby the whole night through. That's the only real side effect, other than the rash on my chest and back, for which I saw a dermatologist Tuesday and now have prescription cream and lotion, so it doesn't itch. I'm truly blessed, and I wish you all a warm good night.
Tuesday, January 22, 2008
Tuesday's Tempo
Long day today, so just a quickie: Tuesday's Tempo includes a feature story on our "Share the Care" system and photo of yours truly on the first day of chemo, in the company of Francine. The story is by Julie Deardorff, health and fitness reporter, whose blog is now linked to this one.
After radiation therapy, my radiation oncologist sent me to a dermatologist to get the rash on my chest and back checked out. The dermatologist took a precautionary biopsy; he suspects the rash is a reaction to chemo and/or radiation, despite the fact that it started before treatment began. He prescribed two creams, which I will try tonight. In the grand scheme of things, the rash is not a big deal, in my view, but I guess they want to take care of it now, before the effects of treatment start to accumulate.
The upshot was that I spent from 8:30 a.m. to approximately 3 at the hospital today, so I was beat when I got home. After a nap I perked up, and I am now going to veg out in front of the tube for an hour or so (resting up for a strawberry sundae). Good night all.
After radiation therapy, my radiation oncologist sent me to a dermatologist to get the rash on my chest and back checked out. The dermatologist took a precautionary biopsy; he suspects the rash is a reaction to chemo and/or radiation, despite the fact that it started before treatment began. He prescribed two creams, which I will try tonight. In the grand scheme of things, the rash is not a big deal, in my view, but I guess they want to take care of it now, before the effects of treatment start to accumulate.
The upshot was that I spent from 8:30 a.m. to approximately 3 at the hospital today, so I was beat when I got home. After a nap I perked up, and I am now going to veg out in front of the tube for an hour or so (resting up for a strawberry sundae). Good night all.
Sunday, January 20, 2008
Steady As She Goes
It occurred to me that I've been writing interior monologues lately and not providing many specifics on the state of my health. I feel pretty darn good. I have had 9 radiation treatments out of 30 and one round of chemotherapy out of four. My appetite is rapacious. Acupuncture and pills so far have spared me gastro intestinal side efffects like nausea, esophagitis, etc. My energy is pretty good considering that my body is full of toxins. I'm up at 6:30 and have been managing whatever I need to manage -- driving, shopping, socializing, cooking, cleaning -- as long as I get a short nap in the afternoon. I start to fade around 9 or 10, and am usually in bed by 10:30 -- early for the old me, but certainly a reasonable hour for the contemporary me. As a rule I'm sleeping well, with one exception last week that I think was due to an over-long afternoon nap.
So far the most annoying side effect has been a rash that began on my chest and has now spread to my back. Benadryl did nothing for it, hydrocortizone seemed to help, and last week the acupuncturist gave me calendula cream for it, which I have been using since Thursday. In the great scheme of things this is a very minor issue.
I'm taking magnesium supplements now, since my last blood work showed a deficiency. I remain on folic acid, which protects the good tissue from the effects of the chemo.
I've tried out a few yoga classes at Gilda's and found a couple I like. Today I plan to do some yoga at home, given the weather. I feel I'm not getting quite as much exercise as I should be getting, and I need it to build up stamina. The effects of this treatment are cumulative, and they tell me the radiation starts to take its toll somewhere around treatment#10-#15, so we shall see what the coming week brings. For the time being, steady as she goes.
So far the most annoying side effect has been a rash that began on my chest and has now spread to my back. Benadryl did nothing for it, hydrocortizone seemed to help, and last week the acupuncturist gave me calendula cream for it, which I have been using since Thursday. In the great scheme of things this is a very minor issue.
I'm taking magnesium supplements now, since my last blood work showed a deficiency. I remain on folic acid, which protects the good tissue from the effects of the chemo.
I've tried out a few yoga classes at Gilda's and found a couple I like. Today I plan to do some yoga at home, given the weather. I feel I'm not getting quite as much exercise as I should be getting, and I need it to build up stamina. The effects of this treatment are cumulative, and they tell me the radiation starts to take its toll somewhere around treatment#10-#15, so we shall see what the coming week brings. For the time being, steady as she goes.
Thursday, January 17, 2008
Kanzeon
Yesterday the Prairie Zen Center in Champaign, IL, began a period of intensive meditation practice, or sesshin (in Japanese). This morning one of the members emailed me: "4:25 AM. Sipping some coffee before I head over for the first morning of sesshin and thinking of you.
Much love....... "
Much love....... "
In the Japanese zen tradition, Kanzeon is the Buddha of compassion. She takes the female form and is known in Chinese as Kwan Yin. I have also heard her called White Tara -- I am not sure if this is her Korean name or Tibetan. In the Catholic tradition she is the Blessed Mother. My friend's email was the day's first manifestation of Kanzeon.
To me, the linear accelerator that delivers my radiation therapy is another manifestation of Kanzeon. Years ago in Champaign I learned a Japanese chant to this Buddha of compassion that is very rhythmic and beautiful. I have made it a practice to chant this sutra silently while I'm lying on the accelerator table, as well as many other times during the day. I think of it as the zen Hail Mary. Last weekend when I was meditating over at the Cenacle Retreat House, Taigen Dan Leighton gave me a rough translation of this hymn of praise--in part: "Joyful, pure, eternal. Every morning, Kanzeon. Through the night, Kanzeon."
It took all of human history to create this machine that gathers electrons from the dawn of creation, herds them into shapes that match my tumors, accelerates and hurls them against this cancer that is trying to kill me. Joyful, pure, eternal. Every morning, Kanzeon. Through the night, Kanzeon. Amen.
Monday, January 14, 2008
In Praise of Appetite
New cancer patients get a lot of scary stuff to read. I have a thick file of booklets and pamphlets for patients that includes "Lung Cancer: Treatment Guidelines for Patients," by the American Cancer Society and National Comprehensive Cancer Network; "Chemotherapy and You," 64 pages from the National Cancer Institute; and "Radiation Therapy and You," also from the NCI.
Then there's my white ring binder from the Robert H. Lurie Comprehensive Cancer Center, with details in Section 4 on Cisplatin and Pemetrexed, the two chemotherapy drugs I'm taking, not to mention Section 5: "Managing the Side Effects of Lung Cancer and Its Treatment." Section 5 contains pithy little paragraphs on a litany of possible side effects, including anemia, breathing problems, bruising or bleeding, constipation, depression, fatigue, hair loss, infection, loss of appetite, mouth sores/gum and throat problems, nausea and vomiting, pain, peripheral neuropathy, radiation fibrosis, sexual and resproductive concerns, and skin problems.
They have to tell you this stuff, but it's disconcerting, to say the least. They're careful to say that not all of these problems happen to everybody, but nonetheless--well, nonetheless.
Anyone who knows me knows I love to eat. So those three little words -- loss of appetite -- have been weighing on me ever since I first dipped into "Chemotherapy and You" two and a half weeks ago. Since then, I have tried to make it a practice to pay attention to every bite I put into my mouth.
Yesterday I went to the Cenacle House on Fullerton for a day of intensive meditation with a zen group headed by Taigen Dan Leighton ( http://ancientdragon.org/) . They served a simple lunch of nicely seasoned stir-fried veggies, tofu and rice pilaf. Heavenly! For dessert there was pineapple (along with a ginger bundt cake), and I do believe that pineapple was one of the best I have ever tasted.
Today when I returned from acupuncture -- hungry, thank God -- there was a message on my machine from Nancy G alerting me to the fact that she had left a container of soup in my front hall. Cooking is so intimate -- you literally put your sense of taste into another's mouth. You nourish. I could taste the love in Nancy's soup.
So this is just a reminder. Savor your appetite. Appreciate every morsel.
Then there's my white ring binder from the Robert H. Lurie Comprehensive Cancer Center, with details in Section 4 on Cisplatin and Pemetrexed, the two chemotherapy drugs I'm taking, not to mention Section 5: "Managing the Side Effects of Lung Cancer and Its Treatment." Section 5 contains pithy little paragraphs on a litany of possible side effects, including anemia, breathing problems, bruising or bleeding, constipation, depression, fatigue, hair loss, infection, loss of appetite, mouth sores/gum and throat problems, nausea and vomiting, pain, peripheral neuropathy, radiation fibrosis, sexual and resproductive concerns, and skin problems.
They have to tell you this stuff, but it's disconcerting, to say the least. They're careful to say that not all of these problems happen to everybody, but nonetheless--well, nonetheless.
Anyone who knows me knows I love to eat. So those three little words -- loss of appetite -- have been weighing on me ever since I first dipped into "Chemotherapy and You" two and a half weeks ago. Since then, I have tried to make it a practice to pay attention to every bite I put into my mouth.
Yesterday I went to the Cenacle House on Fullerton for a day of intensive meditation with a zen group headed by Taigen Dan Leighton ( http://ancientdragon.org/) . They served a simple lunch of nicely seasoned stir-fried veggies, tofu and rice pilaf. Heavenly! For dessert there was pineapple (along with a ginger bundt cake), and I do believe that pineapple was one of the best I have ever tasted.
Today when I returned from acupuncture -- hungry, thank God -- there was a message on my machine from Nancy G alerting me to the fact that she had left a container of soup in my front hall. Cooking is so intimate -- you literally put your sense of taste into another's mouth. You nourish. I could taste the love in Nancy's soup.
So this is just a reminder. Savor your appetite. Appreciate every morsel.
Saturday, January 12, 2008
Sustenance
After a mini-break from blogging, I had thought to devote tonight's entry to a tutorial on women and lung cancer. But you are spared, at least for the time being. Instead, I simply wish to acknowledge what deep delight it was to indulge in my first real bath -- not shower -- since all this began.
This was a day of small and large pleasures. "Restorative yoga" at Gilda's. Doing a couple of loads of laundry, changing the sheets. Luxuriating in the tub. Talking with my dear friend John in Northern Ireland, and Judy H upon her return from Greece (and a 6.5 earthquake). Preparing and consuming three delicious, small meals, with a fourth planned for after my return from tonight's outing: Vitalist Theatre's production of David Hare's "The Bay at Nice." This is a little company associated with my alma mater, Knox College. Their production of "Mother Courage" last year was just terrific.
My friend and classmate Leonard Borden observed early on in our conversations about cancer that his liberal arts education was indispensable to his ability to combat and survive the disease (not to mention our health care system). I have always appreciated my Knox education, but never more than now. The support of Knox classmates and professors remains invaluable. So does the intellectual infrastructure I acquired there. It sustains me, and I am deeply grateful.
This was a day of small and large pleasures. "Restorative yoga" at Gilda's. Doing a couple of loads of laundry, changing the sheets. Luxuriating in the tub. Talking with my dear friend John in Northern Ireland, and Judy H upon her return from Greece (and a 6.5 earthquake). Preparing and consuming three delicious, small meals, with a fourth planned for after my return from tonight's outing: Vitalist Theatre's production of David Hare's "The Bay at Nice." This is a little company associated with my alma mater, Knox College. Their production of "Mother Courage" last year was just terrific.
My friend and classmate Leonard Borden observed early on in our conversations about cancer that his liberal arts education was indispensable to his ability to combat and survive the disease (not to mention our health care system). I have always appreciated my Knox education, but never more than now. The support of Knox classmates and professors remains invaluable. So does the intellectual infrastructure I acquired there. It sustains me, and I am deeply grateful.
Thursday, January 10, 2008
Day 3: Another Man in My Bathtub
David P has been a superb captain this week, and is the latest addition to the "Men in My Bathtub" portrait series. Here he is laying down some anti-skid tapes to prevent me from slipping in the tub.
Today he drove me to radiation treatment #3 of 30, followed by acupuncture. Tomorrow radiation moves to the more comfortable hour of 8:30 a.m. If my energy permits, I'll go to yoga at Gilda's Club tomorrow after radiation.
I actually managed to do a little work this afternoon, courtesy of Kym and Giudi, which will help to offset some of the acupuncture and other costs. That's it for tonight. I'm heading in. Love to all.
Wednesday, January 9, 2008
Breathing Easier
I sat down to meditate tonight, and it seemed to me I am breathing easier. Whether this is due to the steroids that are coursing through my system, to the chemo, the radiation, to all or none of the above, it's nice, and I'm enjoying it. Those antinausea drugs are working wonders, and I am very grateful.
The O'Connell family had another blessing to celebrate: the birth of Claire Cecelia to Mary's daughter Sarah Bush and her husband Hap Bryant. Born at 11:40 p.m. January 8, Claire Cecelia weighed in at 6 pounds, 15 ounces. A very welcome -- and beautiful -- addition to the family. See for yourself: 
I thought I would be featuring photos of radiation therapy for your viewing pleasure, but given that I left the house at 6:45 a.m. , I didn't even think about pulling out the camera once I got to Treatment Room A.
I did, however, pull out the camera for Cecelia O'Connell's 92nd birthday celebration tonight at the far more civilized hour of 8:30 p.m. Cece's daughter Mary took the snaps. 
If John McLarnon is reading this, I hope he takes note. Cece would like to go back to Ireland this summer, and I would like nothing better than to introduce John to Cece. I believe you would enjoy one another immensely.
If John McLarnon is reading this, I hope he takes note. Cece would like to go back to Ireland this summer, and I would like nothing better than to introduce John to Cece. I believe you would enjoy one another immensely. 
The O'Connell family had another blessing to celebrate: the birth of Claire Cecelia to Mary's daughter Sarah Bush and her husband Hap Bryant. Born at 11:40 p.m. January 8, Claire Cecelia weighed in at 6 pounds, 15 ounces. A very welcome -- and beautiful -- addition to the family. See for yourself: 
And yet two more blessings: Mary's nephew Patrick O'Connell was present at the birthday party. He and his wife Brenda were in a terrible car accident not too long ago. We have all been praying mightily for them, and while Brenda is still mending, it was a joy to see Patrick.
So with these glad tidings, I bid you goodnight. I have radiation again at the crack of dawn. As of Friday we move to 8:15 a.m., and possibly next week to 8:30.
Tuesday, January 8, 2008
Day One in Pictures
To embroider on yesterday's theme: I left the house at 7:15 a.m. in company of the indefatigable Giudi W, and did not return until 8-ish in the p.m. So I thought to do a quick blog tonight: Day One in Pictures. Uploading is usually a snap, but tonight, the software forced me to Kodak's web site for an upgrade that took 45 minutes. So Day One In Pictures has not been quick, and we just never know what will happen.
Below you have a view of the patient on Day One, the patient's view,
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because they had to take a bunch of X rays, and because afterward we schmoozed with the radiation therapist, who I thought had gone home for the day. Coming soon, perhaps as early as tomorrow: Radiation in Pictures. I didn't document radiation today, and now I am retiring, given that I'm leaving the house at 6:45 tomorrow, in company of Captain David P.
For readers who want the bottom line, today went fine. Chemo is long - a couple of hours of saline and various preparatory (anti-nausea) medicines and electrolytes and whatnot go in through my handy chest port prior to the 2 chemo drugs, one which is infused over 10 minutes, the other over about 2 hours.
Meet Cathy, my oncology nurse. She is emailing this photo to her mother and worried that her mother will wonder why she hasn't had a haircut.
Below you have a view of the patient on Day One, the patient's view,
lunch with Francine, who took over from Giudi at mid-day, and a beautiful horiatiki salad that I enjoyed with Francine at dinner in Greek Town. Thanks to the fact that I'm chock full of steroids, and to the wonders of anti nausea medications, my appetite remains intact.
Following lunch we proceeded to radiation, which took longer than usual
Following lunch we proceeded to radiation, which took longer than usual
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because they had to take a bunch of X rays, and because afterward we schmoozed with the radiation therapist, who I thought had gone home for the day. Coming soon, perhaps as early as tomorrow: Radiation in Pictures. I didn't document radiation today, and now I am retiring, given that I'm leaving the house at 6:45 tomorrow, in company of Captain David P. Good night all, and many thanks for your kind words and support.
Monday, January 7, 2008
The Night Before
In 1992, shortly before my first trip to Zimbabwe, I went to the library and took out an album called "The Soul of Mbira." It was recorded by Paul Berliner, an ethnomusicologist from Northwestern University, and featured the traditional music of Zimbabwe, unembellished. Among the musicians was Ephat Mujuru, whose family is now my family. At Bernliner's suggestion, I had written to Ephat and asked if we could collaborate on a book of tales of the Shona people, and he had said yes. So I thought I should try to find out who this man was.
I put that album on the stereo in the late afternoon, and lay down on the living room floor on one of my big comfy pillows to have a listen. I had never heard anything like it. The first time through I didn't quite know what to make of it. The music was repetitive, hypnotic, and very, very strange. It just blew me away. I must have played it through three or four times, and each time I heard a little more, the most subtle variations, very contrapuntal. You have to pay attention to Shona music. It's not for cocktail parties.
I lay there until well after dark, just listening. And I remember thinking: nothing will ever be the same.
Of course, this is true every time we go to sleep: when we wake up, nothing will ever be the same. It's true every time we leave the house or get in the car or meet a new person or read a book or hire a new housekeeper. Or take a breath.
But we like to think we know what's going to happen. We like to think that the important people and things in our life will remain the same.
It's the night before my first chemotherapy infusion and blast of radiation, and I know I don't know what's going to happen. For now, that's just fine. My friend Kate, returned from Colombia, came over with a pot of white bean chili (exactly what I had planned to make for dinner). Laura T joined us and meditated with me for half an hour after Kate left. I'm about to jump in my nice new shower and get ready for whatever lies ahead.
Nothing will ever be the same. But then, nothing ever is.
I put that album on the stereo in the late afternoon, and lay down on the living room floor on one of my big comfy pillows to have a listen. I had never heard anything like it. The first time through I didn't quite know what to make of it. The music was repetitive, hypnotic, and very, very strange. It just blew me away. I must have played it through three or four times, and each time I heard a little more, the most subtle variations, very contrapuntal. You have to pay attention to Shona music. It's not for cocktail parties.
I lay there until well after dark, just listening. And I remember thinking: nothing will ever be the same.
Of course, this is true every time we go to sleep: when we wake up, nothing will ever be the same. It's true every time we leave the house or get in the car or meet a new person or read a book or hire a new housekeeper. Or take a breath.
But we like to think we know what's going to happen. We like to think that the important people and things in our life will remain the same.
It's the night before my first chemotherapy infusion and blast of radiation, and I know I don't know what's going to happen. For now, that's just fine. My friend Kate, returned from Colombia, came over with a pot of white bean chili (exactly what I had planned to make for dinner). Laura T joined us and meditated with me for half an hour after Kate left. I'm about to jump in my nice new shower and get ready for whatever lies ahead.
Nothing will ever be the same. But then, nothing ever is.
Friday, January 4, 2008
Bearing the Beams of Love
My heart is so full tonight I hardly know what or how to write. Here are some ways that love has manifested in my life the past couple of days:
A dear one took me to lunch before leaving for New Hampshire, and then emailed an invitation to Barack's Inaugural Ball on January 19, 2009. I have put it on my calendar.
A friend in Kansas City whose son fought and won a battle with leukemia sent a beautiful paper crane. When her son was sick, she wrote, a friend gave him an antique mobile from China with 1000 paper cranes -- for peace, love and healing. The friend told her son that when he was better he should pass it on to someone else in need of healing, which her son did. "So I am sending one crane for peace, love, and healing," she wrote. "I believe one will be enough."
Buddhist friends in Canada sent a yukata, the Japanese summer cotton kimono, to wear during treatment, along with a generous gift for my Zimbabwe family. Two other people made or promised contributions for the Zimbabweans.
Members of my godmother's family sent notes and prayer cards. I haven't seen them in many years. Cards with Frida Kahlo images came from France and Hyde Park, along with many emails from well wishers. My beloved 93-year-old friend in Northern Ireland, John McLarnon, phoned when I was out.
I'm about to watch the news wrapped in a beautiful handmade quilt, a gift to help me through treatment. My upstairs neighbor offered to make extra food when she cooks for herself and bring it down or freeze it for me. Several more people have volunteered to help out. I'm told the volunteer list now numbers more than 70.
When I was a young English major at Knox, some lines from William Blake wrote themselves on my heart:
And we are put on earth a little space,
That we may learn to bear the beams of love.
I am learning. Slowly. But I am learning.
A dear one took me to lunch before leaving for New Hampshire, and then emailed an invitation to Barack's Inaugural Ball on January 19, 2009. I have put it on my calendar.
A friend in Kansas City whose son fought and won a battle with leukemia sent a beautiful paper crane. When her son was sick, she wrote, a friend gave him an antique mobile from China with 1000 paper cranes -- for peace, love and healing. The friend told her son that when he was better he should pass it on to someone else in need of healing, which her son did. "So I am sending one crane for peace, love, and healing," she wrote. "I believe one will be enough."
Buddhist friends in Canada sent a yukata, the Japanese summer cotton kimono, to wear during treatment, along with a generous gift for my Zimbabwe family. Two other people made or promised contributions for the Zimbabweans.
Members of my godmother's family sent notes and prayer cards. I haven't seen them in many years. Cards with Frida Kahlo images came from France and Hyde Park, along with many emails from well wishers. My beloved 93-year-old friend in Northern Ireland, John McLarnon, phoned when I was out.
I'm about to watch the news wrapped in a beautiful handmade quilt, a gift to help me through treatment. My upstairs neighbor offered to make extra food when she cooks for herself and bring it down or freeze it for me. Several more people have volunteered to help out. I'm told the volunteer list now numbers more than 70.
When I was a young English major at Knox, some lines from William Blake wrote themselves on my heart:
And we are put on earth a little space,
That we may learn to bear the beams of love.
I am learning. Slowly. But I am learning.
Wednesday, January 2, 2008
Start Date Now January 8
Just got off the phone with a radiation therapy resident, who tells me they want to start Tuesday, January 8. Chemo will be in the morning, radiation at 3 p.m. On Tuesday they will give me a permanent time slot for daily radiation. I want 8:30 a.m. If this is not open, they'll give me the closest available time slot and put me on a waiting list for 8:30. The resident let slip thatthe chief radiation therapist, is out of town and won't be back til Monday. Perhaps this is why I am not starting treatment until next week.
New Start Date: Monday, January 7
I just got off the phone with the clinical trial director, who tells me I will be starting treatment January 7, not tomorrow. I'm not exactly sure why. Monday when I was reviewing the protocol I noticed it calls for a B12 shot a week before beginning chemo. I emailed the director saying I have not received this shot and asking whether this is a problem. Just now he was vague on the phone as to why I didn't get the shot Dec. 26, when I met with him and the oncology nurse. He told me I will get the shot tomorrow at 11, when I meet with my oncologist, who presumably will make everything clear. I am disappointed, but what can you do.
Tuesday, January 1, 2008
Zimbabwe on My Mind
I spent December 2006 in Mbare, the oldest township of Harare, the capital of Zimbabwe. This was my fourth trip to Zimbabwe, and the first where I lived like most Zimbabweans, instead of like a rich American visitor. I stayed with the Timbenawo family, who named their daughter after me, and who have become my family over the years.
In Mbare, it’s summer in December—the rainy season. Early mornings are cool, but the heat and humidity start to build by 10 and continue until huge cumulonimbus clouds release their rain, or until the sun goes down, whichever comes first. When the rain comes, it comes hard, and we put rags under the door. After a bad storm, the water on the streets can reach mid-calf.
I shared an 800-square-foot house with Linford and Martha Timbenawo and their children: Gladys Valjean (my namesake, then aged 8, now 9) and John Davies, now three. The family rented out what used to be their kitchen, so their living space was reduced to maybe 550 square feet. The house heated up like an oven as the day went on.
I shared a bed with Gladys Valjean. She is a mararo—she thrashes in her sleep, hogs the bed, steals the covers. Once I woke up with her hand in my mouth. I love her fiercely. She has the most amazing skin: it glows copper when the sun rises. She can sleep in any position whatsoever. It makes me happy just to look at her.
Just before dawn, the birds would start to sing, then a rooster would crow. Then you would hear the swish-swish of women starting to sweep and clean, and not too long after that, the lady next door would start in. She is the neighborhood alarm clock. Her whole family is very loud.
On Christmas Day 2006, Martha and I started cooking at 7 a.m. on a two-burner hotplate. By 1 p.m. dinner was ready. The extended family ate in two shifts, plates on laps (no dining room or table). Then we danced until after the sun went down. I will never forget it.
Zimbabwe was in bad shape last year, but nothing like this year. There are only 3-4 hours of electricity per day, from roughly midnight to 4 a.m. Any hot-plate cooking or boiling of drinking water must be done then. Last year the inflation rate was maybe 2500 percent. This year it's 24,000 percent and skyrocketing. Linford, the father of the family, has been selling tchotchkies to tourists in Johannesburg, living away from home for several months at a time. He sends money home when he can, and equally important, sends groceries and supplies -- rice, beans, soap --which are very hard to come by in Harare.
He came home for Christmas, and the family has been struggling with decisions about their future. Elections are scheduled for March, and there is likely to be violence in the township where they live, a hotbed of opposition to the regime. One option is to move Martha and the children for a few months to a low-density suburb near Gladys Valjean's school for $100/month rent -- an exorbitant amount for them, but affordable thanks to the generous donations of guests at my Christmas open house, which raised $677 for the Timbenawos. I will match this amount. Many, many thanks to all who contributed.
Another option is to move the whole family to South Africa. To do this, they will have to pay $300US for travel documents for the children, plus the cost of moving. Then there is the question of where and how to educate the children. South Africa is crawling with millions of refugees from Zimbabwe, many of them much more highly skilled than the Timbenawos. Housing and jobs are hard to find, there is a great deal of resentment toward Zimbabweans (and other immigrants) on the part of many South Africans, and the Timbenawos would be far from the support and love of their extended family.
I cannot advise them from here but have told them I will do my best to support whatever decision they reach.
We used to communicate weekly via the grandfather's land line, but that telephone is on the fritz, so communication has become difficult. Text messages are an option, and we also email - but to do so Martha or Linford or both have to go to town to the Internet cafe, a trip that can take half an hour to an hour in a crowded minibus. Often when they get to town the Internet is down, and they have to turn around and try again the next day. I sometimes phone their cell, but it's hard to get through, and hard to hear and understand one another through the static when I do get through.
I have not yet told them about my illness, but I must do it soon. They sent me a text-message yesterday wishing me a happy new year, and I text-messaged back that I would try to phone their cell today. It's 9:30 p.m. in Harare as I write this, usually a good time to reach them -- the network is not so busy at night. I am not going to try to have this conversation on the phone, but I will ask them to check their email as soon as they can, which will force me to write to them. Their last email contained details of rental and passport costs, as well as the news that the headmaster of Gladys Valjean's school has resigned. He has been doing yoeman's labor to keep the school going, and I fear his departure will mean a rapid decline of educational standards, if not the closure of the school itself.
To the donors to my African family, many thanks for your generosity. Your support will help tremendously, whatever the family decides to do, and that, in turn, will help me because I know they will be provided for. Blessings to all for the new year.
In Mbare, it’s summer in December—the rainy season. Early mornings are cool, but the heat and humidity start to build by 10 and continue until huge cumulonimbus clouds release their rain, or until the sun goes down, whichever comes first. When the rain comes, it comes hard, and we put rags under the door. After a bad storm, the water on the streets can reach mid-calf.
I shared an 800-square-foot house with Linford and Martha Timbenawo and their children: Gladys Valjean (my namesake, then aged 8, now 9) and John Davies, now three. The family rented out what used to be their kitchen, so their living space was reduced to maybe 550 square feet. The house heated up like an oven as the day went on.
I shared a bed with Gladys Valjean. She is a mararo—she thrashes in her sleep, hogs the bed, steals the covers. Once I woke up with her hand in my mouth. I love her fiercely. She has the most amazing skin: it glows copper when the sun rises. She can sleep in any position whatsoever. It makes me happy just to look at her.
Just before dawn, the birds would start to sing, then a rooster would crow. Then you would hear the swish-swish of women starting to sweep and clean, and not too long after that, the lady next door would start in. She is the neighborhood alarm clock. Her whole family is very loud.
On Christmas Day 2006, Martha and I started cooking at 7 a.m. on a two-burner hotplate. By 1 p.m. dinner was ready. The extended family ate in two shifts, plates on laps (no dining room or table). Then we danced until after the sun went down. I will never forget it.
Zimbabwe was in bad shape last year, but nothing like this year. There are only 3-4 hours of electricity per day, from roughly midnight to 4 a.m. Any hot-plate cooking or boiling of drinking water must be done then. Last year the inflation rate was maybe 2500 percent. This year it's 24,000 percent and skyrocketing. Linford, the father of the family, has been selling tchotchkies to tourists in Johannesburg, living away from home for several months at a time. He sends money home when he can, and equally important, sends groceries and supplies -- rice, beans, soap --which are very hard to come by in Harare.
He came home for Christmas, and the family has been struggling with decisions about their future. Elections are scheduled for March, and there is likely to be violence in the township where they live, a hotbed of opposition to the regime. One option is to move Martha and the children for a few months to a low-density suburb near Gladys Valjean's school for $100/month rent -- an exorbitant amount for them, but affordable thanks to the generous donations of guests at my Christmas open house, which raised $677 for the Timbenawos. I will match this amount. Many, many thanks to all who contributed.
Another option is to move the whole family to South Africa. To do this, they will have to pay $300US for travel documents for the children, plus the cost of moving. Then there is the question of where and how to educate the children. South Africa is crawling with millions of refugees from Zimbabwe, many of them much more highly skilled than the Timbenawos. Housing and jobs are hard to find, there is a great deal of resentment toward Zimbabweans (and other immigrants) on the part of many South Africans, and the Timbenawos would be far from the support and love of their extended family.
I cannot advise them from here but have told them I will do my best to support whatever decision they reach.
We used to communicate weekly via the grandfather's land line, but that telephone is on the fritz, so communication has become difficult. Text messages are an option, and we also email - but to do so Martha or Linford or both have to go to town to the Internet cafe, a trip that can take half an hour to an hour in a crowded minibus. Often when they get to town the Internet is down, and they have to turn around and try again the next day. I sometimes phone their cell, but it's hard to get through, and hard to hear and understand one another through the static when I do get through.
I have not yet told them about my illness, but I must do it soon. They sent me a text-message yesterday wishing me a happy new year, and I text-messaged back that I would try to phone their cell today. It's 9:30 p.m. in Harare as I write this, usually a good time to reach them -- the network is not so busy at night. I am not going to try to have this conversation on the phone, but I will ask them to check their email as soon as they can, which will force me to write to them. Their last email contained details of rental and passport costs, as well as the news that the headmaster of Gladys Valjean's school has resigned. He has been doing yoeman's labor to keep the school going, and I fear his departure will mean a rapid decline of educational standards, if not the closure of the school itself.
To the donors to my African family, many thanks for your generosity. Your support will help tremendously, whatever the family decides to do, and that, in turn, will help me because I know they will be provided for. Blessings to all for the new year.
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