Friday, 31 May 2013

The cortisol circus

I was six when I went into hospital for the first time. Elbow surgery. They thought I had cancer. What looked like a large tumour on X-rays turned out to be 'just' an abnormal growth of my radial bone. Goran is only two-and-a-half, and besides the entire first month of his life spent in NICU, he has amassed a further THREE hospital stays – first for bronchiolitis, then pneumonia (and a grommet op), and now bronchospasm (asthma attack). That's a total of one-and-a-half months in a 29-month life span spent in the confines of one hospital bed or another. Jesus. Anyway, for the benefit of those who don’t follow me on Facebook, below is a detailed account of Goran’s most recent hospital visit, the likes of which I hope never to see repeated, as it was definitely the most harrowing to date.

At 6am on Monday, after keeping both Lee and me awake the whole of Sunday night with a tight chest and persistent dry cough, Goran awoke demanding cereal. After breakfast I nebulised him and SMSd his playschool to say that I would be keeping him home that day. By 8am his breathing had become extremely laboured and he was wheezing really loudly, at which stage I knew we were in the throes of a full-blown asthma attack. I bundled him into the car and raced down to his paediatrician at our local NHC, who took one look at his horrible grey pallor and listless demeanour and immediately hooked him up to oxygen. Within ten minutes he had phoned Goran’s paediatrician at Olivedale Hospital who said he needed to be admitted right away. I don't even want to know how many speeding fines I racked up between Northcliff and Olivedale – all during the tail end of rush hour traffic – but by 9am he was in the High Care Unit at Olivedale, attached to oxygen, a drip, and a plethora of monitors, being nebulised with adrenaline and magnesium sulphate. By that point he had progressed to what is called a ‘silent chest’ – inflamed airways and bronchoconstriction, meaning there was no longer enough air movement in the lungs to actually produce wheezing. Sadly, many people interpret the disappearance of wheezing during an asthma attack as a sign of improvement and fail to get prompt emergency care. But without immediate aggressive treatment in an ER or ICU, chances are the person will eventually lose consciousness and die.

Two nights and three days later he was discharged, and we had to take him back yesterday and today for IV treatment. We are currently in a four-hourly nebulising routine, which he absolutely hates, writhing around like a feral cat being given a bath, and for which I'm seriously considering investing in a straitjacket. Next Wednesday we have a follow-up appointment with his paediatrician who will prescribe an ongoing course of asthma maintenance therapy. We simply cannot afford a similar episode, especially during the Jozi winter ahead, and especially while he’s still so small. Otherwise, we're pretty much back to normal. He will be going back to playschool next week. It's just for four hours a day (8:30am - 12:30pm), and I'll be keeping an extra beady eye on his health for the next couple of months.

Saturday, 25 May 2013

Rocking my literary socks off in Rosebank

I love the energy of this crazy city. I love the warmth of its diverse people. And I love the way events are always so well supported. Today, for the second annual Kingsmead Book Fair, the city's people turned up in their droves.

The author talks I decided to sit in on all happened to take place in the same venue - the main school hall - and I was absolutely blown away by the calibre and breadth of guest speakers the organisers had managed to procure. First up was the five-month preggie Redi Tlhabi, who did the sweetest signing in her memoir Endings and Beginnings for me. Next was the legendary and inimitable Pieter-Dirk Uys, who very kindly posed for a picture with me. Followed by a more politically-oriented panel comprising Helen Zille's charismatic predecessor Tony Leon, Hlumelo Biko (son of Mamphela Ramphele and the late Steve Biko), with Jeremy Gordin. And last but not least, the hilariously outspoken Nik Rabinowitz with the deliciously caustic Gareth Cliff, whose beautiful baritone I really first recognised and appreciated over a live mic today - rather than his usual on-air haunts of radio or telly.

Below are a dozen or so of my best iPhone snapshots, which should give you a feel for the great vibe of the day. Tonight I'll be hitting the hay early as tomorrow I'm going on a breakfast outride (pardon the pun) in Elandsdrift Valley, bordering the Cradle of Humankind. It'll be my first time back in the saddle in four years, and I'm really looking forward to it. Let's just hope this time my horse doesn't spook and send me bloody flying, resulting in a middle back injury whose residual pain still plagues me upon waking... Every. Single. Day.

Above and below: The phenomenally talented Pieter-Dirk Uys

Above and below: Bubbly and politics... interesting bedfellows
Below: Tony Leon

Above: Gareth Cliff and Nik Rabinowitz
Below: Outstanding catering by The Forum Company

Below: Unfortunately after a Coke, panini, and glass of Brut, I ran out of cash, and the tea-and-cake ladies didn't accept cards, so I had to call it a day and come home for coffee instead

Wednesday, 15 May 2013

A little uncanny...

Below is a direct copy-and-paste version of an article that appeared in today's edition of The Boston Globe, by staff writer Deborah Kotz. I just found it incredibly unnerving how similar in subject matter it is to my previous blog post only two nights ago, and I felt I had to document this here, for possible future reference. I have highlighted in red the parts that are most pertinent to me personally.

Actress Angelina Jolie made a wrenching choice after a blood test detected a genetic defect that made breast cancer all but certain in her lifetime: She opted to have her breasts surgically removed. Her decision starkly highlights the less-than-ideal options available to women confronting a similar diagnosis.
And her case — there is no drug specifically targeting her genetic mutation that will prevent cancer — casts a light on personalized medicine, a still-adolescent field in which the ability to find disease can sometimes outstrip the ability to treat it.
Preventive surgery to remove the breasts and ovaries can dramatically reduce lifetime risk of getting these cancers to 5 percent or less. But those measures also mean an often long and painful recuperation from surgery as well as long-term consequences, such as reduced sexual pleasure and early menopause.
“Women need better choices,” said Dr. Susan Domchek, an oncologist who heads the Basser Research Center at the University of Pennsylvania School of Medicine. “We shouldn’t think that these surgical preventions have fixed the problem. They’re just a temporary solution.” The Penn center is developing medications and vaccines that target a mutation in the BRCA gene — such as the one carried by Jolie — but those treatments are still years away.
With advances in genetic screening and cancer prevention research, women who have close family members with breast or ovarian cancer often face difficult questions. Should they get screened for a BRCA mutation? What will they do if they test positive — get their breasts removed, ovaries removed, or both? Or should they opt for frequent mammograms and magnetic resonance imaging to detect any cancer early?
The number of women opting to get the breast cancer gene test keeps increasing, with about 250,000 expected to be screened this year; more than 1 million have been screened since the test was approved in 1996, according to Myriad Genetics, the Utah company that makes the test. The mutation is carried by 1 in 1,000 women, but accounts for 5 to 10 percent of breast cancers and 10 to 15 percent of ovarian cancers.
Some women, like Susan Feinberg of West Dennis, do not find out they have a BRCA mutation until after their cancer has been diagnosed. After having surgery to remove a malignant breast tumor and undergoing chemotherapy four years ago, Feinberg, 54, is scheduled to have her healthy breasts removed Monday at Beth Israel Deaconess Medical Center. Her ovaries were removed soon after chemotherapy.
“I was told I had a 20 percent risk of having a second breast cancer within five years after my diagnosis,” Feinberg said. That’s higher than most women who are diagnosed with early stage breast cancers but do not have the mutation.
The BRCA1 mutation, which both Jolie and Feinberg carry, confers a lifetime breast cancer risk of up to 87 percent and a 50 percent likelihood of getting ovarian cancer; researchers have found that having surgery to remove healthy breasts and ovaries before they become malignant can largely prevent the cancers and help save lives.
“Most medical professionals would say it’s not the only thing a woman can do, but it’s a very reasonable approach,” said Dr. Eric Winer, director of the Breast Oncology Center at the Dana-Farber/Brigham and Women’s Cancer Center.
Despite a family history of breast cancer, Feinberg delayed genetic screening; the disease ran on her father’s side, striking her grandmother, aunts, cousins. “I just wasn’t ready to take that step,” she said.
Once it was clear she had the gene, Feinberg pressed ahead to have her ovaries removed because ovarian cancer, with no reliable screening test, is usually detected too late. “They detected microscopic cancer cells, so there’s no question that the surgery saved my life,” she said.
Removal of the ovaries can prevent ovarian cancer and also reduces breast cancer risk by about half. But it thrusts a woman into early menopause, which can have jarring side effects for someone as young as the 37-year-old Jolie.
“Bone loss, hot flashes, vaginal dryness, sexual dysfunction, and feeling terrible,” said Winer, ticking off the maladies likely to occur when women “jump off the high dive into menopause.” Doctors often recommend hormone replacement therapy for women who choose to have their ovaries taken out before age 50.
Jolie may have put off having her ovaries removed if she hasn’t closed the door on having more biological children; her doctors may have told her there’s no pressing need to have surgery because ovarian cancer typically doesn’t occur until a woman is in her late 40s or early 50s, even in those with the BRCA mutation, Winer said.
The $3,000 cost of the screening test may be an “obstacle for many women” without health insurance, as Jolie mentioned in her opinion piece, published in yesterday's edition of The New York Times. But most women in Massachusetts get coverage if they meet certain criteria established by the American Cancer Society and other medical organizations, including having two first-degree relatives (mother, sisters, daughters) with breast cancer or two second-degree relatives (grandmother or aunts) with ovarian cancer.
Jewish women of Eastern European descent would likely qualify for coverage if they have a single first-degree relative with breast or ovarian cancer because they are at higher risk of carrying a gene mutation. Federal law requires insurers to cover the test in those who are eligible with no cost-sharing imposed on patients.
Some psychologists see a strong upside to the spotlight Jolie thrust on using personalized medicine to manage genetic risks for hereditary cancers. “There is still a fair amount of stigma” surrounding the issue of BRCA testing, said psychologist Sharon Bober, who directs the sexual health program at Dana-Farber Cancer Institute. What Jolie did, Bober added, “is enormously empowering” for women facing similar choices.
Feinberg received several donations on Facebook Tuesday to a nonprofit for which she volunteers, Facing Our Risk of Cancer Empowered, which counsels those at risk for breast and ovarian cancers.
Women who discuss their experiences with prophylactic mastectomies in forums and at events sponsored by the group often describe their recuperation. “There are the things that no one tells you, like . . . it will be easier to sleep in a recliner than a bed,” Feinberg said. A recently purchased recliner is sitting in her living room.
Angelina Jolie is 10 months younger than me. Pictured above is her mom Marcheline Bertrandwho died in 2007 at the age of 56, after an almost decade-long battle with ovarian cancer. For Angie's unabridged account of what she actually went through these past few months with all her preventative and reconstructive surgery, click here.

Monday, 6 May 2013

Irie in Irene, baby!

Man, I could move to Irene tomorrow. What a pretty part of the province!! On Friday my folks drove up from Durbs and on Saturday we all went through to Stone Cradle, a short drive from Irene, for my eldest cousin Alouise's betrothal to her beau Lionel. The venue has a panoramic view of Irene on one side of the R21, and the Rietvlei Dam Nature Reserve on the other. We spent the night at the Colonial Guesthouse just off The Oval in Irene village itself, and yesterday morning my folks headed back to Durbs, while Lee, Goran and I took the opportunity to explore the picturesque Dairy Farm for which Irene is famous. My late Ouma and Oupa actually used to own a plot in Irene, near the dairy farm, bordering the golf course. But that was a looong time ago, back in the Seventies, when I was Goran's age. Imagine if they'd had a crystal ball and could've anticipated how incredibly sought after and valuable their property - in a then-rather nondescript village in the vast nothingness between Jozi and Pretoria - would one day become!

Above: My Ouma and Oupa, with all their grandchildren,
at their house in Wonderboom South, Pretoria, circa 1984.
That's me in the blue anorak at the back, next to Alouise.
Her younger sister Lelani is the one in the red dress.

Below: Bridesmaid Lelani and her big sis Alouise