Sunday, April 29, 2012

April 22, 2012…….things I think about in the dark…..

April 22, 2012…….things I think about in the dark…..




Sometimes when I’m lying in bed waiting to fall off to sleep, I allow myself to review my health “situation” for the past five years. During the daytime I usually try to do enough self-talk that I can downplay the overall picture and focus just on the way I feel at that moment, sometimes good, sometimes not so good. But at night in the dark I feel more ready to take on my reality. Why that is, I don’t know. You’d think it would be easier to face tough times in the bright light of day, but that’s not how I work.

Anyhow, recently I’ve been ruminating over these past five years—March 2007 I was diagnosed with metastatic breast cancer, April 2007 I had a modified radical mastectomy and then had a port inserted in my chest to facilitate chemo treatments, and then in May 2007 I began chemotherapy treatments which have continued to this day. In fact, tomorrow I’ll make my weekly trek to the Women’s Cancer Hope Center for the umpty-umpth infusion. Last summer, the summer of 2010 I had 25 radiation treatments to my chest and neck, from both the front and the back. I get all kinds of tests and scans—the usual blood tests before every chemo, tumor marker blood tests every couple of months, echocardiograms every two to three months, several CT scans, MRIs, PET scans and bone scans annually. There’s never a dull moment. Plus I’ve had sessions with two different physical therapists, many, many treatments for lymphedema, plus daily home self-treatments. I’ve had acupuncture, now with a second acupuncturist, a couple of small massages, treatments from a naturopathic physician, and an initial visit from a palliative care group. And, gone through bankruptcy. It’s enough to send a person around the bend.

And that’s just what’s on the schedule. What is unscheduled are all the various side effects that the treatments, mostly the chemo treatments have caused. I’ve had nausea (no longer, thank the Lord), fatigue (for the whole five years, sometimes better, sometimes worse), muscle pain in what seems like every muscle in my body, sometimes all at the same time, sometimes just in my back, osteoporosis, back problems of all sorts, lymphedema in my feet and hands (tingling and numbness), dry eyes and mouth, weepy eyes, mouth sores, pain in my jaw, rashes, UTIs, lost voice, cough, shortness of breath (currently my worst problem, and it’s a BIG problem), inflamed finger and toenails, cracks in my fingernails, loss of hair (three times—it’s just now growing back for the third time and is totally different from my “old” hair. Now its frizzy curly with a mind of its own.) Oh, yeah, and constipation and diarrhea. And maybe there’s more, but I forget. Anyhow, right this minute I have frizzy hair, sparse eyelashes and eyebrows, serious shortness of breath, fatigue, constipation, muscle pain especially in my back, neuropathy in my fingers and feet/toes, cracked fingernails. And that’s on the lowest dosage possible of this current chemotherapy.

There is one good side effect. Due to the steroids that are included in the cocktail of drugs infused each week, I get a couple of days of minor back pain but lots of energy. It feels so good to feel good; I race around doing all kinds of little chores that go unattended when I’m more fatigued later in the week. But on the other hand, the steroids make me want to eat, just exacerbating my weight problem.

However, in addition to my “regular” life, of which I have little left by now, I do have two additions to my life that have made the cancer journey more do-able. One is a website for metastatic cancer patients from which I have learned an awful lot about what other women are going through, along with good information about drugs in the pipeline, alternative treatments, info on cancer treatments centers, nutrition, and just general support and inspiration. Of course, there’s the all-too-often death of one of the posters to the website, and that’s a sobering thing. But the biggest positive in my life now is a group of women, all who have or have had cancer that I meet with weekly, along with a very talented and caring facilitator. We know, as much as anyone can, what each other are dealing with in our cancer journeys and that makes it a very safe, very special group. I’m eternally grateful I found this group right after I started chemo. It would have been a lot worse, mentally (and maybe physically, who knows) without them.



So that’s me ranting and raving (or maybe moaning and groaning) for once, and out in the open in the daylight, for a change.

As I was eating my bagel with peanut butter ....

As I was eating my bagel with peanut butter and drinking my cup of green tea this morning, it occurred to me how different what I eat now is from what I ate as a child. Of course, one reason is that I choose what I eat now and my mother chose most of what I ate as a child. But it’s more than that.

For breakfast, in my childhood, there would be buttered (with margarine that we called “oleo”) toast (white bread, of course, from the local Dandee bread bakery), jelly (Grandmother Roberts’ homemade guava—my favorite-- jelly or Grandmother Hunter’s homemade orange marmalade that I didn’t care for. Also eggs, either scrambled or fried, or occasionally hard-boiled, but never soft-boiled. Bacon, too, of course, fried and the fat saved for seasoning for cooking vegetables. I’d never heard of a bagel, and English muffin, or a croissant, and wouldn’t until I was grown.

For the lunch I took to school, Mama made a fried Spam sandwich (boy, didn’t the classroom smell good long about 11:00—IF you liked the smell of Spam) The white bread was spread with Miracle Whip, never plain mayonnaise, and if Mama had made cookies, there’d be one or two included on the side. Both wrapped in waxed paper, and carried in a brown paper bag that I reused umpteen times until the bottom threatened to fall out.

Today lunch for me is liable to be a big salad of various lettuces, spinach, cucumbers, tomatoes, cauliflower, onion, and tuna fish or sliced turkey breast.

In my childhood, we never ate tuna fish (why would we? Daddy brought fresh fish---free—almost every day), or turkey except at Thanksgiving, and even then it might be chicken. We never had fresh spinach or cauliflower and I thought I didn’t like onions or cucumbers.

We did eat lots of fruit when I was a child—bananas, apples, grapes, mangos, strawberries, and citrus fruits of all kinds, but no cherries, blueberries, raspberries that are so ‘in’ now (and so expensive.)

Dinner. Now there’s where nothing overlaps. For five nights every week when I was a child, we had fried fish (the kind varied with what Daddy was catching—I loved them all), grits, cole slaw, sliced tomatoes, pickles, and some vegetable such as corn or green beans. On weekends, we had pot roast, or stewed chicken, or boiled ham, plus mashed potatoes, gravy, field peas or black-eyed peas, plus sliced tomatoes and cucumbers, pickles and bread (white). Dessert was usually Jello with fruit cocktail inside, or maybe canned peaches or pears (that I liked a lot better than the fruit cocktail.)

Today I can rarely afford to have fish, and when I do I usually broil it. I almost never have pot roast or ham or mashed potatoes or pickles or those delicious field peas. The bread I eat is multi-grain, when I eat it.

 could go on and on, but you get the picture. Conditions change, tastes change, the culture changes, and with it goes the old menu.

April 23, 2012----I just received an email……

April 23, 2012----I just received an email……

I just received an email from Google Alerts. Google Alerts is a thingy whereby you list names or phrases of people or companies or events or whatever and then Google “alerts” you anytime it detects a new entry on the web regarding any one of the names on your list. Well, in addition to my own name (naturally, wouldn’t you?) Another name I listed was Lizo Mazwei, a medical doctor in the old apartheid South Africa who had spent years in the homeland of Transkei, and then later (when I met him) was on the faculty of the University of Transkei (name subsequently changed to Walter Sisulu School of Medicine), first as the Chairman of the Department of Surgery and then as the Dean of the Medical School. I have a lot of stories that include Lizo Mazwei, but I’ll stick to the one about this recent Google Alert.

From this Alert, I was linked to a story in a South African publication that announced the recipients of the Mkiva Humanitarian Awards by the Walter Sisulu University. There were four recipients this year: my friend Lizo Mazwei, for his work with a human needs organization, a Mr. Mpofu, who is Zimbabwe’s Mining Development Minister, Mr. (or Ms?) Sooliman, founder of a charitable organization, Mr (or Ms?) Ngema who is a playwright, actor, and singer, and finally, Fidel Castro, former president of Cuba.

Well, that sort of stopped me in my tracks. I had to go back in time and remember that during the apartheid days when the African National Congress, of which Nelson Mandela was a prominent leader and was jailed (for 27 years) and the organization banned in South Africa, the Cuban government (read Fidel Castro) gave money and materials to the ANC guerrillas . Then after apartheid was banished, the ANC came to power and Nelson Mandela elected president, the Cuban government (read Fidel Castro) sent hundreds of Cuban doctors to South Africa to help staff the woefully neglected black medical schools in the former homelands. Others went to community hospitals and clinics in the country-side of the former homelands. I met a number of these Cuban doctors during my several trips to Mthatha and the former University of Transkei medical school. They were all well-trained doctors and doing a yeoman's job of propping up the inadequate medical system they found themselves in.  They had little to say about Castro or Cuba, except to ask me why the US (JUST 90 MILES AWAY, they would say) did not recognize Cuba's government.

So to a certain segment (a large segment) of black South Africans, Fidel Castro is a hero, a compadre, a champion of health care for all, and someone who put his money where his mouth is. A far cry from the public image Fidel Castro has in this country, where we pay more attention to the difficult life of his people under his leadership (but where there IS free universal health care.) The world, she is complicated.







April 22, 2012---thoughts while being (acu) punctured…..

April 22, 2012---thoughts while being (acu) punctured…..


While I was lying on my side with who knows how many acupuncture needles poking up and down my back, my mind took off on one of its wild tangents, drumming up memories long forgotten. I don’t remember the sequence of memories, but I do remember some of the vivid scenes that came to mind. Like when we met Monique, our Dutch “au pair”, at the airport, and she came strolling out of the gate, a gorgeous thing. Long thick blond hair, blue, blue eyes, tall straight back, wearing a long tunic-like black shirt, white pants, and fancy flip-flops, and carrying a tiny purse just large enough for a passport and some money. Wow, I thought, she came all the way from Groningen with just this? No big purse, no carry-on bag, nothing hanging off her shoulders. I figured she was either supremely confident or had not done a lot of international traveling. In hindsight, I think it was a little of both.



And then a glimpse in my mind’s eye of high school math classes—from 10th grade on, a group of us had the same teacher, Miss Andrews. Miss Andrews was the quintessential “old maid” teacher, devoted to her students and to her subject. Our group, as best I remember from my acupuncture-stimulated vision of the class was Kathy Errett, Sue Crittenden, Susan Enns, Ronnie Meier, Koby Koblegard, Luke Edgar, Hebert Perez, Sherry Hayes, John McDermid, Dan Cowles, and a few others. Maybe Don Osteen. Maybe James Kindervater. Maybe Jeanne Gaffney. I forget who else. And me, of course. Once we caused Miss Andrews to cry after she had been called to the door by the principal to give her some message. We, the class, made a lot of noise talking to each other, not even thinking that she might be getting bad news. When she came back inside, she sat down at her desk and put her head down. When someone asked her what was wrong, she lifted up her head, her eyes filled with tears, and said she was so embarrassed that we had “misbehaved” in front of the principal and he would think she wasn’t a good teacher. We were all so ashamed of ourselves, and if I remember right, Ronnie Meier went up to her and put his hand on her back and told her how sorry we all were. I wonder if kids today would do the same.



And my mind also wandered without any conscious direction from me to a scene from Jonathan’s childhood. His grandmother Jane Camp was staying with us at the time, and Jonathan had his little friend Benjamin over for a “play date.” They were both about 5 years old, I’m guessing. Anyhow, Jonathan had told Benjamin with great excitement about an “infestation” of frogs we had had on our side porch, and Benjamin was all agog. When his mother came to pick him up, Benjamin called back to us, “if you see a fwog, give me a wing.” Grandma loved that and would repeat it at opportune and inopportune times.