Wednesday, October 28, 2009
Crawling out of my hole
Fever
Chills
Soreness
Fatigue
Chest pain
Shortness of breath
Hives
Sore throat
And then, the worst – the headache to end all headaches. Even codeine only dulled it a bit. I thought my head was going to explode.
So I pretty much spent the entire weekend in bed, making it out for a few hours each evening. And this was really bad timing, because we had a really close friend visiting, and for once I actually was invited to a few social functions that didn’t involve bubble machines and jumpy castles.
Four doctor’s visits and 4 malaria tests later, I was diagnosed with a bacterial infection. Oh, thank God for antibiotics. I’m back at work today, finally, just trying to claw out of the huge pile of work that is building up. Which means this is going to be a short post. Because I am going back to work now. Bye.
Friday, September 4, 2009
Your little one is sick. He has a fever, and a cough. You know from your friends, the websites you frequent, your parenting magazines, that a fever that lasts several days should be checked up by a health professional.
So off you go, off to the clinic. Unfortunately, however, you live in a rural area, so it is an hour-long drive to the clinic. You go early, because they don’t take appointments. When you arrive at 7:30, which is when the clinic is supposed to open, there is no one there apart from a rather surly security guard. He writes your name on a list, so that you can go in the order you arrived.
All the other chairs are already taken up by other moms and babies, so you find a seat on the floor. Then you wait. And wait. Around 9:00 AM, the clinic staff start to show up. They dither around for another 30 minutes, chatting amongst themselves, shuffling papers, hardly even noticing the presence of the patients.
Finally, patients begin to be called. Half the time, though, the patient list isn’t followed. Instead, the nurse lets in whoever manages to be closest to the door. So you shuffle, you scoot, you hustle your way ever closer to the nurse’s office every time the door opens.
Even though the little boy next to you looks almost comatose, and is clearly in need of emergency health services, the boy isn’t noticed, and his mother is not called in until it is ‘her turn.’ You hope that the baby doesn’t die while you’re waiting. Will that mean you have to wait even longer?
Almost four hours after you arrived, you are finally called into the nurse’s office. The nurse doesn’t greet you, or smile and say hello. She just motions you to sit down, and begins asking questions. What is wrong with this child? Why didn’t you come earlier? Don’t you know that fever is very serious?, she chastises you. You feel ashamed, but because she is a little scary, you don’t say anything. Then, without ever looking you in the face, the nurse hands you two pills from a jar on her desk, and tells you to give them to the child, and to come back if your daughter gets worse. You are not told what illness the child has, or how to prevent it. You are not told what the pills are. You are excused.
The next time your child gets sick, what will you do? Will you make that hour-long drive to the clinic? Or will you just go to the drugstore, get some children’s Tylenol, and hope that your daughter gets better?
We did a community assessment a few weeks ago where we went out and talked to local mothers in Malawi, and this is basically what they told us. They walk miles, wait for hours, then get treated harshly, sometimes even abusively. All for a couple pills. And yet they still go! This is the miracle of healthcare in Africa – that people even turn up at health facilities at all!
Almost every day I hear government officials and aid workers complain of the peoples’ ignorance, their apathy. ‘We tell them what they should do, why don’t they do it?’ they ask. What we should be doing is asking ourselves why we expect poor African mothers to consent to a standard treatment that we would never accept ourselves. Because they are poor? Because they don’t know any better? Because they should just be happy with the scraps they get? As you in America are debating the need to reform the healthcare system, please don’t forget that inequity is unacceptable, in rich and poor countries alike. All people have the right to quality healthcare.
Wednesday, August 19, 2009
News in small, digestible chunks
- I'm sick
- I'm working way too much
- I might get to go to Scotland for work in a couple months!
- I feel guilty for being away from my family so much of the time
- In the past week, we hosted the Saturday run (and breakfast), hosted the weekly Hash, and tonight I'm cooking dinner for 6 co-workers. Sunday is Gumbo night for friends. We do too much.
- I lost my cell phone
- I can't remember my own husband's phone number to call and ask for a ride
- Milo is on a food strike
- But he knows his feet, gives plenty of kisses, and enjoys dancing to reggaeton.
- I haven't photographed my son in almost 6 weeks. But for Auntie Miriam, here is a picture from when we were in New Orleans:
For those of you who are wondering, here is the account of how I finally resolved my money dilemma, taken from an e-mail to my dad:
I did end up managing, but it was a hellish day. First, I made an hour-long
walk to the other ATM I knew of. It also would not take my card. So I called
Jorge (who hadn't been home before) to get my account number and I went into the
branch to try to do a withdrawal. But they wouldn't allow me to withdraw from
a checking account without an actual check.The teller directed me to another nearby branch. I walked there. The branch was closed. I walked further toward another bank. Each Malawian I asked told me "no, it's not far." but Malawians are not very good at giving directions, so I got lost. Finally I called a taxi, which I couldn't pay for, but I was being hopeful. He drove me to ANOTHER bank, one with the other banks had told me would take my card. They were wrong. Finally, I threw myself on the mercy of their customer service rep, who took pity on me and allowed me to make a withdrawal from my checking account. I mean, really, couldn't they have done that in the first place?
All in all, I walked for 3 hours. My poor feet.
Thursday, June 11, 2009
So much news...
First of all, and most importantly, if you didn't see my Facebook update:
The results are in, and I am officially in remission for five years. This is such good news that I don't even know where to begin with the happy, relieved feelings. It seems like the last 5 years have taken forever to pass. And I think of who I was back then - a recent graduate, unemployed, newly engaged, broke, and totally insecure about the future - to now: a mother, happily married for almost 5 years, with a career I love (and no longer broke, big bonus).
I'm not out of the woods, of course - my doctor tells me that 10% of the people who have Hodgkins relapse after 5 years, but the odds get better and better each year that passes. And I plan on sticking around.
On to other news:
- Dad and Joan arrive tomorrow for the weekend - I'm so excited for them to get to see how big and fun Milo has gotten.
- Today Jorge and I got roped into helping his sister prepare and distribute 200 home-cooked meals to raise money for her daughter to be a princess in a Mardi Gras ball next year. Made me feel grateful to have a boy.
- Sneak peeks of Milo's professional photos are up on the web!!! Check out my super-talented friend Amy's blog at: http://imagesbyamy.blogspot.com/. I can't wait to see the rest! We had a great time wandering around the French Quarter taking pictures.
Friday, June 5, 2009
Deja vu
It was a strange feeling being back at the hospital though. It brought back all kinds of memories of being a patient, being sick. You know, all those medical dramas on TV always present the story from the doctor's point of view, and I think it must be because the patient's world is so surreal and absurd that it's too difficult to portray accurately... (Not that Grey's Anatomy is committed to medical accuracy or anything. But still.)
For one thing, there's that strange feeling of being an outsider. In your typical hospital, there are people with badges, people in scrubs, official people scurrying all around you. They barely give you a glance. They are clearly up to something important. And then there's you, wandering the halls, seemingly the only patient in the building until you find your way into a waiting room. It's almost as if you are intruding on the doctor's world, even though the whole place couldn't exist without you - the patient.
And then of course, for me, there's the whole perky young blonde thing. I never fit in in the oncology department, in the chemo room, in the radiation waiting area. Everyone else was so old, so frail, and just worn down by it all. I don't know if the other patients felt sad seeing someone as young as me being treated for cancer, or envious of my energy. Likewise, I always wondered how the doctors and nurses viewed me: with pity? Or even worse, did they hardly think of me at all? Even now, married and a mother, I stand out.
I was lucky - I had one doctor (out of the many) who treated me like a human being, who asked about my relationships, who was sympathetic to my financial situation. That is the doctor I still go back to when I'm in New Orleans, even though she has moved twice since Hurricane Katrina. The rest of them...well, they gave me good medical care, which from their point of view seems to be all they felt they were obligated to do. Your view of doctors also changes when you spend a lot of time in hospitals.
So hopefully I am done with the poking, the nasty chemicals I have to drink, the nurses trying to find one of my tiny veins to stick, the holding still for everything...I can get back to just being Gwyneth, not Gwyneth the sicko. Until next year, at least.
Thursday, February 19, 2009
Me: Squeaky Wheel
So I googled: "write the president"
And what do you know? The White House has a simple, easy web form where you can send a message to the president! It's right here, go try it! Flex your civic muscles! It feels good.
I won't bore you with the text of my letter (which was a dazzling piece of political wit, naturally), but it was basically about how cancer survivors like me are essentially barred from getting health insurance unless we have an employer generous enough to provide us with it. And then once we do get insurance, it won't cover the cancer, a 'pre-existing condition' for a full year (which is a really long time when you have cancer. Trust me.) Even when we've been healthy for years. It really sucks, OK?
Yes, I know President Obama is not going to personally read my letter. But call me naive, I do believe someone will read it, and then my letter will go into some big database of public opinion, and reports will be made, and I'll be a part of the system then, not just a bystander.
In my mind, I like to picture a little workshop of elves in the basement of the White House. Receiving my letter, a happy elf walks over to a big whiteboard and adds another checkmark to the "Affordable healthcare for all = good thing" column.
Oh, get ready to work, little elves. Pandora's box is open. I am going to wallpaper that White House with letters now! Viva democracy!
Saturday, February 7, 2009
Oh, also, I am in Ireland. Hey, surprise! Isn't my life one interesting turn of events after the next? I had an interview today (with the organization I already work for), and they wanted me to interview in person, because it's a pretty high profile job for them. I think I did alright, but do you know that feeling when you leave an interview, and you have no idea what you actually said? It's all sort of a nervy blur. So what do I know, maybe I was a total ass. I guess I'll find out in a few weeks.
It is cold here. This has clearly not helped my tuberculosis. But on the plus side, I have free wireless in my hotel, and I have done a bit of shopping, which is really the important thing. Organic baby toothpaste! Quinoa! Gnocchi! Yay!
Tomorrow I fly back to Malawi, which means I will have spent about 60 hours traveling, and only 44 hours in Dublin. Not a good balance, really.
Monday, October 20, 2008
A little lesson in inequality
If you don’t, you are not alone. If you think it’s HIV or Malaria, you agree with the majority of Americans. And you are wrong. Sixty percent of Americans incorrectly identified these illnesses as the leading causes of death for children. In actuality, malaria and HIV only account for 11%.
What is really killing kids? The simplest of things: pneumonia – 36% of child deaths; malnutrition – directly or indirectly leads to 35% of deaths, and diarrhea – 18% of deaths. Every year some two million babies die within their first month of life. That’s equivalent to all the babies born in the U.S. in a year.
The saddest thing is that most of these deaths – about 6 million each year – can be prevented through simple, cost-effective interventions like rehydration salts and antibiotics. This seems like something we as Americans should do something about, wouldn’t you say? I mean, who can argue against saving kids?
Well, do me a favor and tell that to your congressman, OK? About 4 billion dollars a year are spent on child health programs worldwide, but 12 billion dollars a year is needed if those 6 million kids are to be saved. For its part, the U.S. appropriated 450 million dollars for child health programs last year, but funding has generally stayed flat for the last 10 years.
I guess that sounds like a lot of money in these troubled times. But consider this: the U.S. government spends five billion dollars a year on HIV programs alone, and HIV only accounts for 2 million annual deaths worldwide. We have the money folks. We’re just spending it elsewhere. I read today that the Bush administration has spent a billion dollars on abstinence education despite no evidence that it works. Doubling our child survival funding each year would only cost an extra $1.50 per American resident. Imagine what we could do with an extra five dollars, or ten dollars.
I’ve seen too many sick kids in Africa, and I hate knowing that they die for such stupid reasons. Can you imagine an American kid dying of diarrhea? So I am appealing to all of you, start getting active on this issue. The U.S. Coalition for Child Survival is a great place to start for information on how to help. And there are many great organizations out there that you can donate to.
Monday, June 16, 2008
I will survive
I've been told that 1 in 3 Americans would be diagnosed with cancer in their lifetime. My two sisters really owe me for taking that one for the team. ;-)
We leave tomorrow morning for a two week trip off to Montana, Yellowstone, and wherever else the wind (OK, the interstate) takes us. So expect lots of pictures soon!
Monday, September 17, 2007
Raise your glasses...
It was three years ago that I got the good news that there was no more Lymphoma in my system. That first year post-treatment was pretty scary. The second year I got nervous every time a test was due. Now, three years on, I'm starting to feel pretty confident that I kicked that whole cancer thing in the patookis. It deserved much worse, let me tell you.
Anyway, I was looking for a graph that would show how my chances of getting sick again decrease over time. Instead I found this:

Basically, what this means is that the chance that the Lymphoma will come back drops very low by the time I make it to about 7 years - but I'm already past the most common recurrence period.
The bad news is that 40% of people who get Lymphoma kick it within 25 years, usually due to secondary cancers caused by the initial cancer treatment (ironic, no?). This is why health insurance policies want 3,000 dollars a month to cover me, and why life insurance providers refuse to even give me a quote (I have tried). From their point of view, I am a ticking time bomb, ready to blow up in a blaze of medical bills and abandoned dependents.
But let's keep this all in perspective, shall we? After all, this study was done on people who got sick in the 60s. For all I know, they were injecting patients with rocket fuel back then.
For what it's worth, I feel like one of the lucky ones.
IN OTHER NEWS, tomorrow Jorge and I fly back to the U.S. for two weeks! We have a whirlwind trip planned to New York, Pennsylvania, Los Angeles, and New Orleans, where we will see numerous friends and relatives, but have too little time to actually hold a conversation with them. We'll just whizz by and yell "Hey, you look great! Love the hair! Gotta go now!"
Monday, August 27, 2007
Got a boogie in your butt
When Jorge got home from Tanzania, he said “Hey baby, look at my butt. What are these?” I looked and saw that he had several red welts on his backside. We figured it was bug bites, and waited a couple days to see if they cleared up. Instead, the bumps just grew, and became painful and itchy. I urged Jorge to go to the doctor. He stubbornly refused.
A week later I went to the doctor myself for a checkup. Jorge asked me to ask about the bumps. I told him that any doctor worth his salt would need to physically examine the bumps to make a diagnosis, and that I couldn’t just waltz in to the doctor’s office and ask for medicine for an undiagnosed problem for an invisible patient. Jorge just got mad at me.
So we go off to Thailand, Jorge scratching his booty in agony at all the temples, museums, and shops. Every 30 minutes or so I would repeat: “I really think you need to see a doctor about that,” which usually sent him off on a tirade about how it was all my fault anyway. Jorge tried several painful home remedies involving poking, squeezing, and burning. One morning after a particular vigorous attempt to dislodge the little buggers, I took a look and saw that the bumps were very clearly moving. You could see a little raised line along the path they had taken.
Finally, tired of the whining, I went into a pharmacist’s and, sure that it was worms, asked what medicine we could give. Of course, she insisted on taking a look at the bumps. So there was poor little Jorgy, standing in the middle of the pharmacist’s office with 4 little Thai women bending over and looking at his butt very closely, giving an occasional prod. The pharmacist stood up and told Jorge “I think you have Herpes.”
Exasperated, we bought some Cortisone cream and went on with our trip.
When Jorge got back to Malawi he finally went to the doctor, where the diagnosis was Subcutaneous Larva Mobilus. I’m not much good at Latin, but even I can figure out what that means. Little Worms Moving Around Under Your Skin.
We like to joke what a good caretaker Jorge is. Not only did he provide his little pets with shelter and food, he even took them on vacation with him! As for the creatures, Jorge got medicine to kill them, but his butt looks pretty bad still. I think he waited too long to get treatment and they went ahead and laid eggs in his tush. So let that be a cautionary tale to all of you. When your wife tells you to go the doctor, GO. Before you go all Alien and things start bursting out of your body.
Sunday, March 18, 2007
Taking my own advice for a change
I know most of you will find it very difficult to imagine a gym in sub-Saharan Africa, but they do exist. I have hit the gym in Eritrea, Ghana, and now Malawi. Alas, Darfur still hadn’t opened one during my stay there, but I’m sure it’s coming.
My gym has two treadmills, three bikes, and about 8 weight machines. There is a sauna and steam room (which are only heated on request) and a hot tub of dubious hygiene. Overall, it’s small, but well-equipped and clean. It’s located in a very nice hotel opened by the Malawian president 3 years ago.
What you may not know is that every African capital has at least one swanky hotel for visiting dignitaries (Lilongwe has 3!). There’s been a trend for quite some time among African heads-of-state to build ostentatious, Western-style luxury hotels, intended to proclaim to the world that the country is no longer a backwater. And when these hotels get out of date they
But for a gal in need of a bit of firming and toning, who needs politics, right?
Friday, March 9, 2007
Oh how special those three little words are…
“No abnormal lymphadenopathy”
What, were you expecting love and romance? You need to be ALIVE for those other three little words to mean anything!
I have been on pins and needles all day after getting a message that the nurse who is handling my case needed to speak with me right away. Urgent messages always ring off alarm bells for me. So all day I’ve struggled to get any work done at all, little worst-case scenarios running through my head.
15 minutes ago I got a phone call – the nurse had received the report on my CT scans, but they were sealed and addressed to my oncologist. She wanted to know what I wanted her to do. So of course I had her open the envelope and read the report to me. You thought I was going to wait another week?
The tests showed no tumors, no swollen lymph nodes, so signs of cancer at all really. I’ve just come back from the ladies room, where I went to do the happy dance in private. I feel so light and relieved, knowing I’m now going into my 4th year of remission. Each year that passes, the chance that the cancer will return diminishes, although I know that I will never be completely free from the risk, and the fear, of relapse.
So here are three more words for you:
I love everyone !
The world is so beautiful today, even with the rain and rubbish I see out of my dingy office window. To be born in a time and place where I have the opportunity for a long and healthy life…I just feel so blessed. If I had been born just a generation or two sooner, I probably wouldn’t have even made it to 30.
Although, that thought brings me back down to earth. I am alive now because I got about 150,000 dollars worth of top-quality medical care from the US government. I live in a country where the average life expectancy is 37, and where most people don’t have access to treatment costing hundreds of dollars or less.
Earlier this week, after leaving a meeting with a donor, I asked “Why is it that we don’t think twice about spending hundreds of thousands of dollars to treat critically ill children in the West, and yet we have to fight to justify spending 200 dollars to treat a dying child in Africa?”
Nonetheless, I sure am glad it was me who got that treatment. I will not let my liberal guilt ruin my mood today. It can come back tomorrow. Tonight I have some celebrating to do.
Monday, March 5, 2007
CT scans today
I am in remission 3 years as of last month. I feel healthy, no weird bumps or unexplained symptoms, so I'm optimistic that I'll get another all-clear this week. The first time I had to go for follow-up scans I couldn't think of anything else for two weeks. This time I only started thinking about it yesterday. So that's progress.
I'm not allowed to eat or drink anything for 4 hours before the test, which means no breakfast today. I'm hungry already. And during the exam you're given an IV and they inject "contrast dye" into your veins, which gives you a hot flash. Like menopause. It's about as much fun as it sounds.
Then immediately following the test, I'm off to the airport. My bags are crammed with things to take back to the office in Malawi, so I'm a bit stressed about carting everything around today. So wish me luck today - you'll hear the outcome one way or another in the next few weeks.
Friday, February 23, 2007
Civilization, here I come!
Our headquarters is in Dublin, and I was supposed to go when I first started this job back in September. But since I was already working in Malawi at the time, it was decided I would go once I was settled in a bit. So 6 months later, I'm finally off to the land of Guiness, Yeats, U2, and the Shamrock Shake! (You must click that link, by the way. Worth it.)
Everything is just about sorted here. I've started packing, borrowed a warm jacket, picked up my meals allowance, and I just got my ticket in my hot little hand!
While I'm away, my house is going to become a B&B for two of the bigshots who work in our head office. So naturally I've locked up all the good booze. I mean, come on - they're Irish. I would lock up all the beer too, but I'm too lazy to carry it up the stairs, so I will just have to accept a certain amount of loss.
I will spend a week in Dublin, then get my semi-annual CT scans to make sure I'm still cancer-free, then I pop off to London for two nights. I was hoping to spend the weekend there visiting my old roommate from Eritrea, but the appointment is Monday in Dublin, alas, so I'll have very little time in the U.K.
My plans are to:
- Go on a pub tour in Dublin. History should always come with alcohol.
- Hit a pub on "trad night" for music
- Eat obscene quantities of cheese
- Shop at H&M
- See cousins and friends
- Go to Neal's Yeard Dairy to bring home even more cheese
- A movie would be a treat as well
Saturday, February 17, 2007
I'm so sick of healthcare expenses
Before I took my current job I made it very clear that I would not work here unless the insurance covered medical expenses related to my prior illness. It took a few weeks, but finally I was told that the insurer would cover those expenses. On my very first day on the job, I discussed this with the operations manager, and was told that in these cases, they normally fly you to South Africa to have any kind of specialty care done, but that it wouldn't be a problem.
So I'm supposed to get CT scans every 6-12 months. In a week I'll be going to Ireland for a week for work, so I asked if I could have the tests done there - since they have better facilities and I wouldn't have to take time off work.
So first off, they tell me it would be too difficult to get the tests arranged in Ireland. When I complained to the new operations manager, he took it straight to them, and they found a place where I could have the tests done. But now they're saying their insurance won't cover it, because they won't cover any check-ups or preventive healthcare, except for pre-departure immunizations, etc! What good is the insurance then, if you can only get care after you've become ill, rather than preventing it in the first place!
Anyway, I hope the office here will honor what they told me on my first day, and foot the bill. I am so tired of having to pay out of my own pocket, when I could actually be saving these insurance companies hundreds of thousands of dollars by identifying problems early on.