So I’m doing a dosimetry study as part of my cancer treatment. There are only a few cancer centers in the country that offer it. Jury is still out on whether or not that is a bad thing. Yesterday I was gone 12 hours driving, waiting, getting blood drawn, waiting, getting whole body scans, waiting. Oh, and I got to fast until 3pm because the lab was super slow getting my blood work done. Today was supposed to be just a quick blood draw, laser-type thingie and a wbs, in the door and out in about 30 minutes… ha. There is no such thing as “quick” anything at the hospital. The WBS machine was down until noon which meant that I had to go shopping. I had to. There was nothing else to do but sit in the nasty hospital waiting room. This is getting expensive. Between the gas driving 140 miles round trip every day and amusing myself in my old college town while waiting for one technician or another to get something done I am spending a lot of money every day. Still beats chemo by a long shot. But I miss my babies when I’m gone all day.
health
June 19, 2008
A friend of mine clued me in to a nearby country club selling season pool passes to non-residents for $100/family. It was such a bargain I’ve even braved peak-sun to take my Lilly-white children swimming. Last year I was so pregnant and it was so hot I rarely ventured out of the house. By the end of the summer my kids were white as sheets. Even Hila who is naturally more olive-skinned. Hannah has that same skin color and already has a better tan than I can ever dream of. The girls are just lucky that way. We’re going to have to buy sunscreen in bulk this year. I was really proud though, the first day we came back from the pool and Hila said, “Mom, that was soooo fun!” I’m really enjoying my time with the kids right now. I know I’m only going to be without them for a week, but its been a long-anticipated week of dread. As it approaches I feel very calm about it. So far the hypo-symptoms are not nearly as bad as I expected them to be. As long as I line up a lot of projects to do I’m sure the week will pass fairly quickly. My RAI date is June 27th. About a week away! By the time I get my dose I’ll be off my meds completely for 3 weeks. I’ve found that while the thyroid cancer support group is helpful in some ways, it tends to scare me more than put me at ease. I remember thinking when I first started reading people’s posts, “Come on, ya’ll… its not that bad.” And then I started thinking…maybe it is that bad. I know I haven’t had the chance to be radioactive and lose my sense of taste yet, but if that is as bad as it gets (*knock on wood*) this cancer is a sneeze compared to say, the flu. Or pregnancy. Or almost anything else I have to compare it to. I hope I’m not setting myself up for something by saying that. 
Anyway, I’ve got Hila’s favorite cousin for lunch and then we’re all going swimming. Its really great having an activity to hold over the kid’s heads until they get their chores done.
June 15, 2008
I’m a full week off of all thyroid medication in preparation for my radio active iodine treatments. I’m also fairly religiously following my low-iodine diet. There are very few things I can eat. No seafood, no dairy, no eggs, no prepared foods or resturant foods containing salt. That pretty much strikes everything but fresh fruits and veggies, meat and steamed rice. I can have bread if I make it but I’m pretty unmotivated. I was starting to feel a little sorry for myself at the two father’s day meals we attended at my parent’s and BJay’s parents today when the options for me were peas, ham and water. I am also feeling the effects of no thyroid hormone. I’m naturally a little foggy-headed at times, clumsy, and I can’t get my words out. Now that is all exaggerated and I’m pretty tired. So I was starting to feel sorry for myself until I read this post that my friend Jamie linked on her blog. She and her sisters are taking care of their mom while she’s going through chemo. It ripped my heart out of my chest and my heart isn’t even connected to their mom. Life is so amazing. All the sudden I don’t feel so tired. I don’t feel so hungry. I just feel grateful. I can handle this. Its nothing compared to chemo.
June 13, 2008
BJay has been talking about this concept for months now, and I think its brilliant. His idea was to privatize health care and take it out of the hands of employers. Dr. Ezekiel Emmanuel has just come out with a book that lays out this type of Universal Healthcare plan. I am willing to eat my words–if any candidate is smart enough to use this plan I WILL VOTE FOR HIM!
DR. EMANUEL: Our proposal is for universal healthcare vouchers. It’s a plan where everybody in America gets a voucher to buy health insurance from an insurance company or health plan or a managed care organization. And they get a basic benefits package. If they want to buy more, they want—wider choice of doctors, they want better services, say, better eye glass services, or they want more mental health services, they can pay more and they can buy up.
Their employer isn’t involved, so there’s continuity. They stay—stay with the same plan whether they change jobs, or unfortunately get fired. The plans cannot, say, “We’re going to exclude you for preexisting conditions.” They have to reinsure that.
BRANCACCIO: What’s in it for—’cause you still have insurance companies in this plan. You haven’t eradicated insurance companies. So—what if you’re decrepit, and you show up—with your little voucher. Why should they take you?
DR. EMANUEL: So every insurance company would, to participate, would be required to take the voucher. That’s the first thing. The second thing is that doesn’t mean that they would get paid the same amount no matter what people—what illness people have. The point you’re saying is, look, some people use more healthcare resources.
And there would be a reason for the insurance company not to cover them. We take care of that by what is called risk adjustment. That is the national health board, when they give money to the insurance company to cover a person, pays extra for sicker people, and less for healthy people. That eliminates the incentive for insurance companies to skim the cream, or drop the lemons.
BRANCACCIO: Cherry pick I believe is the term these people use.
DR. EMANUEL: Or that’s right. That’s another one.
BRANCACCIO: Well, let’s review some of the other advantages of the plan as you see it. So you wouldn’t have employers doing this.
DR. EMANUEL: Absolutely.
BRANCACCIO: Which would relieve some burden on America’s overburdened corporations.
DR. EMANUEL: Absolutely. I think—I think—some of the biggest supporters of this plan will be businesses. They want—their employees to have insurance, but the costs are becoming too high, too astronomical for them.
So they would get out of the game entirely. And I think that’s a good thing. One of the benefits for employees would be they would probably see their wages go up. ‘Cause, right now, employers—are playing whatever it is, ten, 15 percent, of—of their labor cost to health insurance. That money would be, if the economists are right, transferred as increases in wages.
BRANCACCIO: Not just a shareholder value?
DR. EMANUEL: Well, it might go to shareholder value. But, again, they’re going to have to compete for workers. And it probably—I mean the economists think it would go—predominantly to—workers in—increase in wages. So that would be a benefit.
BRANCACCIO: Now if I can speak for the—two million suspicious people watching us right now, when you talk about a basic package of—
DR. EMANUEL: Right.
BRANCACCIO: —medical coverage, what are you talking about? Are you talking about—the most advanced cancer care? Or what are you talking about?
DR. EMANUEL: You would probably get the same plan you have now as a basic benefits plan. Look at what the average employer is providing to their employee today. Take that premium and multiply it times all Americans. And how much does that come out?
BRANCACCIO: I thought a component of this was an added tax. What the Europeans call value added tax, sales tax, sort of.
DR. EMANUEL: Right. Well, if the states aren’t paying Medicaid anymore, and employers aren’t paying for insurance, we would have to find the money to pay for this. We wouldn’t add more money, but we’d—you’d have to get basically—recoup somehow how employers are paying for it and how the states are paying for Medicaid. And that would be—we’ve proposed to finance this by a value added tax.
That means that, when you buy something, the added value is taxed. The tax would be about eight to ten of purchases—if you eliminate food and some other items that—poor people disproportionately buy. And, again—it—you’re going to have to pay for this somehow. It is going to be a tax.
BRANCACCIO: This seems a little shocking if you add the ten percent to the nine percent sales tax they’re already charging in California. Nineteen percent sales tax.
DR. EMANUEL: Well, but—remember what you get for that. So—your wages should increase—because you’re no longer paying—your employer is no longer paying for you health insurance, and should transfer that money to your salary increase. And there is this benefit of guaranteed healthcare. The overall—and your—by the way, your state taxes should go down if Medicaid is no longer part of the state—budget demand. So all of those things—should—we’re not demanding any more money devoted to healthcare. We’re just shifting how we get it.
BRANCACCIO: But still insurance companies there in the middle. They’re sort of—I love insurance companies as much as the next guy. But they’re kind of middle men. And there have been arguments by health—policy experts—
DR. EMANUEL: Right.
BRANCACCIO: That they’re kind of noise in the system.
DR. EMANUEL: One of the things that I think is important going forward, to make healthcare more efficient, and to get continuity of coverage better—is to have vertically integrated health plans.
Where your doctor works with the hospital, works with the pharmacy. Works with the home health aid. Works with skilled nursing facilities. So that you’re not sort of picking and choosing in the—in the whole system is just broken into parts.
That does require someone to vertically integrate health plans, health insurance companies. Where we would change from the current system—is the following. Right now in America there are about 1,300 health insurance companies. Many of them very small niche players. They cater to very small companies, but they add a lot of administrative costs —in the sense of they’ve got a different billing system. And so people have to keep up with that. In our plan, we would estimate that we would cut that down to about 50 or 60 plans throughout the country.
BRANCACCIO: You’d also get rid of those insurance companies, and there are some, who only like to insure people who will never get sick.
DR. EMANUEL: Absolutely. You can—in—again, in this proposal you’d have to take whoever walks through the door.
BRANCACCIO: Is it not troublesome to you that, under your plan, a wealthy person could buy some really “souped” up coverage that a poorer person could not get access to. There’d be this basic inequality.
DR. EMANUEL: You don’t think that happens now? From a practical standpoint, the rich can always buy. It seems to me the ethical question, the question of justice, is are people getting a good basic benefits package? And is—the—is everyone getting that?
It is not required, I don’t think, from an ethical standpoint, from a matter of justice, for that government to provide everything that could possibly be—be done for everybody in the country. We would go bankrupt.
BRANCACCIO: You think Republicans and Democrats could embrace a voucher plan? Of the sort that you’re discussing?
DR. EMANUEL: I think so. And I’ll say why. I think for the Democrats—the universality. The fact that everyone’s in the system. Everyone gets the same basic benefits package, is appealing
I think Republicans, I think what they want to be sure is, it’s not a—big government entitlement with no—with unlimited—budgets like Medicare. They want to make sure that Americans get choice. That we retain a private delivery system.
We have all of those in the voucher program. So I think the universal part appeals to the Democrats. The voucher part appeals to Republicans. And I think it should make us one big happy family. And we should just pass it.
May 29, 2008
One of the members (Peter Crane) of a thyroid cancer support group listserve I belong to posted an article in USA Today Thyroid radiation protections revisited. This is something I’ve been trying to figure out ever since I got my diagnosis and learned that RAI meant that I shouldn’t be near my children for at least a week. Every Dr. I talk to has a different set of instructions on how to protect my children from harmful exposure. The Thyca listserve is full of people who have been through the process and most everyone there agrees that you should send your children away for at least a week if not two. The precautions suggested are to basically pretend you are infected with bubonic plague and isolate yourself from everything and everyone for as long as possible. The Drs I’ve talked are far less uptight. My Nuclear Medicine Dr. said that there is no problem with going home to my family. I can hold my baby the day of my dose, according to him–as long as I don’t hold her for more than 5 minutes. I haven’t met with the nuclear safety officer yet but the Nuc. Dr. warned me that they will be a lot more paranoid. Back in 1997 the Nuclear Regulatory Co mission ended mandatory hospitalization for patients receiving I-131 doses. Before then, patients would stay in isolation in the hospital until a nuclear safety officer determined that they were “safe” to enter the public again. Now we take the dose and go home. Or go into a hotel. Think about that next time you stay in a hotel. There could be someone radiating in the room next to you. I really don’t know how paranoid we should be about this. According to Dr. Ain, Director of Thyroid Oncology UKMC
COMMON SENSE REGARDING RADIATION SAFETY AFTER
RADIOACTIVE IODINE TREATMENTSRadiation safety precautions are based upon a very
reasonable consensus public policy that individuals,
who do not require exposure to radiation for their own
health, should have the least exposure to radiation as
is reasonably achievable. The acronym that is
commonly applied is “ALARA” (As Low As Reasonably
Achievable).Such precautions have been designed because of this
PUBLIC POLICY and NOT because health professionals
expect radioactive iodine patients to be dangerous or
harmful to anyone else. In fact, I can conceive of
only three examples of situations in which a
radioactive iodine therapy patient could “endanger” or
cause “harm” to someone else: 1) If a cannibal should
chance to devour the patient immediately upon
discharge, this cannibal might experience dysfunction
of their thyroid gland; 2) If someone would try to
drink all of the urine produced by a patient for the
two days following discharge, they might also expect
dysfunction of their thyroid gland; and 3) If a
patient would breast-feed a child within two weeks of
such a therapy the radioactive iodine might be likely
to damage the infant’s thyroid gland. Lactation
during therapy would also provide excessive radiation
to the patient’s breasts and is an additional reason
why lactation must be discontinued for a couple of
months prior to receiving radioactive iodine
treatment.Besides the three situations listed above, it is NOT
CONCEIVABLE that any MEASURABLE HARM could result from
a radioiodine therapy patient.
I find Dr. Ain’s “common sense” funny and comforting. But I think when you are going through this yourself there is a level of fear and paranoia about exposing your children. After all, nobody wants thyroid cancer to be revisited upon their children. The fear is that the guidelines changed in 1997 because insurance companies didn’t want to pay for hospitalization. From the USA Today article
But Crane and other thyroid cancer survivors say it will take more than voluntary guidelines to persuade insurance companies to cover hospital care.
“The NRC’s guidance is a useful interim step, but it doesn’t go nearly far enough,” Crane says. “This country is out of step with international standards for protecting children from radiation, and the NRC now recognizes it. The NRC is asking doctors and insurance companies to be more generous in hospitalizing patients, but the guidance has no legal force whatever.”
I am sending my children away for a week. But there is part of me that wonders if that is long enough. I am going to be so afraid to kiss them and hug them when they get back. My baby girl is so kissable I find myself unconsciously kissing her face and the top of her head all the time. It would be nice to feel confident that the guidelines we are given to protect our children aren’t influenced by insurance companies need to make money…
May 14, 2008
I watched Nova last night with BJay. It was titled “A Walk to Beautiful”. The story was about Ethiopian women who sought treatment for obstetrical fistula which happens in childbirth. Because women in rural villages are malnourished and are doing hard physical labor from the age of 2, they don’t grow to be very tall, and their pelvic bones aren’t very wide. Plus they are married young and get pregnant very young. A combination of all these and the lack of obstetrical care leads to problems with delivery. The babies just can’t fit through the birth canal and are often stuck there way too long. The pressure of the baby’s head cuts off blood supply to parts of the woman’s bladder and/or rectum and so the tissue dies and falls off. So the women are left with the horrifying problem of leaking urine or feces or both. Most often the baby dies in childbirth and then the husband leaves. The women are sent home and shunned by their communities. I was absolutely heartbroken watching this. I usually turn away from stories like this that make me sad. But I was just so hooked from the start by the women’s plight. Ayehu, one of the women in the documentary had lived with her fistula for 6 years. When she came home to her parent’s house after her husband left her, her mother made her sleep outside. She had to build a makeshift hut on the back of the house where she expected to die. She said that even her brothers and sisters despised her for living. Then one day a woman named Fikre who had also lost a baby and lived with a Fistula for 10 years came and told Ayehu about the Addis Ababa Fistula Hospital where Fikre had been cured. They followed Ayehu on a 6 hour walk to the city and 17 hour bus ride to the hospital. Ayehu had surgery and was cured. Another woman Wubete had sustained so much damage to her bladder that it could not be repaired. She had to have a device that acted as a plug that she would remove when her bladder was full. She refused to go back to her village and was set up with employment at an orphanage where she cares for 4 children there.
This left me thinking about a lot of things. First of all, how grateful I am that I live in the United States. For so many reasons. But I think that being a woman here is a thousand times easier than being a woman almost anywhere else. I can’t imagine what it must be like to have to take a 17 hour bus ride with serious incontinence. But then I can’t imagine how the 17 hour bus ride is the end of a 6 year struggle with humiliation, alienation, and despair. I am in awe of people like Dr.Catherine Hamlin who dedicate their lives to serving the poor. It was in my master plan to join the peace corp out of college. I don’t know what our lives would have been like had we done that. But I like to think we would have learned to love the people we served. I can only hope that I would have been as understanding and compassionate as the Hamlins. When I watched the documentary I was so angry for the women. How could their husbands and families be so cruel? How can you treat someone who has suffered so much with contempt? Catherine and her husband went to Ethiopia in 1974 and never left. Her husband died and Catherine stayed on. She understands the culture, the actual journey of these women. From her interview with directors Mary Olive Smith and Amy Butcher:
“So she’s married to a farmer boy and looking forward to having a baby…
She starts labor and she expects to perhaps deliver by the evening or early morning. But the day goes by and she doesn’t have the baby. The village women encourage her. The second day goes by and even a third and fourth—up to 10 days I had a woman in labor. By that time the girl is exhausted and dehydrated, and she finally pushes out a dead baby. There’s her dead baby lying on the sheepskin rug on the mud bench beside her.
Q: And this is only the beginning of her pain.
Hamlin: Yes. She slips into a sleep of exhaustion because of her long labor. She’s worn out, she’s exhausted—and she wakes up to a worse horror…Her life is shattered, ruined. She can’t control any of her body waste.
Her husband comes back from the fields in the evening and says, “Why is the house smelling? Why can’t you get up and cook my meal for me?” He probably loves her; most of them do love their wives. He just can’t understand what has happened, and he can’t really accept this girl. Afterward, he may stay with her two or three days or two or three weeks even, but finally he thinks, “Well, she’s no use to me now as a wife.” And he will say to her—or, often, she will say to him, “Look, I’m no use to you. I’ll go back to my mother and father.”
Q: How should we feel about the husbands who abandon these girls?
Hamlin: We shouldn’t condemn them. These men are farmer boys; they might be only 18 or 20. They’ve never seen a medical condition like this, and they have no idea what’s the cause of it. They think that perhaps they have been cursed by God or the devil. They’ve got superstitious ideas that this has happened to them for some punishment. They don’t associate it with the days of labor.
They’re not cruel. Many of them love their wives. I’ve had one or two come back and say, “Please cure my wife, I want her. I want her to get better.” So we can’t condemn these young boys. I condemn the older men who have had two or three wives, an older man who is married to a young teenage girl. He should know better.
Q: So then she goes home to her parents.
Hamlin: She will go home to her own village—maybe it’s next door, maybe some distance away. They run out to welcome her, thinking she’s coming home with a baby, and they find her in this state. They love her, they put their arms around her, they hug her, they bring her into the house. But not for long, because of the other children in the house, the neighbors coming and going. They can’t manage with somebody who is leaking urine and possibly bowel contents.
So the mother will say to the father, “What can we do?” And he’ll say, “Well, we’ll build a little shed outside and put her [there].” They will build her a little hut somewhere in the village, somewhere on a farm plot they’ve got, and there she will stay till death. This is the fistula’s sufferer’s tragedy, her tragic life. Psychologically she’s terribly disturbed. She’s lost all her femininity, all her dignity, all her hope of having another child, all her hope of mixing with her society.”
And that is how it happens. When you think of it, this happens in the developed world all the time on many levels. Initially we have compassion and time to serve those who are suffering, but when the suffering becomes prolonged and there is no end in sight, we don’t have the capacity to go the distance. There are many levels of humanity.
April 15, 2008
Yesterday I went to the cardiologist. I’ve been putting off that appointment since January. Partly because of different illnesses that have been going through the family, but mostly because I just didn’t want to find out if I had another health issue. The Dr. was a really nice guy–and it was funny to me that his english accent made me feel confident in his abilities. Anyway, he had me do a stress test on the treadmill to rule out Long Q-T syndrom, even though I have never had any symptoms of it. Apparantly my heart just has a slightly longer interval between the q and the t electrical signals on my EKG. So I did the treadmill thing (really wished I’d been exercising more regularly). But as it turns out, there is nothing wrong with my heart!! Horray for that! When the Dr. was explaining the reason he wanted me to do the stress test he asked if there had been any sudden, unexplained deaths in my family. ?? How did he know? Anyway, long q-t syndrome runs in families and he said that if I had it, he would want all my children tested. Such a relief not to have to worry about that.
March 20, 2008
A friend of mine emailed me this early this morning with a note, “This is worth 11 minutes of your time.” If you watch Oprah, you might have seen this already. It hit so close to home for me I thought I’d share…
March 17, 2008
This morning Hila came in to the kitchen where I was and gave me the following instruction:
“Mom, make something I can open up and it will surprise me.”
So I got down her bag of candy she collected at Mema’s egg hunt yesterday. She was not pleased. She then clarified,
“No mom, I wanted you to make a chain of paper dolls.”
Huh. Isn’t that interesting. So I’m wondering if I’m modeling this kind of vague instruction and disappointment when people fail to read my mind? Or was it just that she thought her initial instruction was clear. Either way I see myself doing that all the time. At least BJay says I do. Unless I specifically spell out everything that I want I have to get used to getting his interpretation of what I want. And the interpretation is never very close.
(I just found that was an interesting little exchange. I don’t usually let Hila get away with bossing me around.)
***
I’m troubled that Hannah seems to have developed some separation anxiety. I was planning on doing my RAI in the beginning of May. This means that I’m supposed to be weening Hannah right now and that in May I’ll have to separate myself from my children for a week or so. The weening isn’t going great. I fix Hannah a bottle, and she somehow knows that it is her food and gets excited up until the moment she tastes the formula and then she scrunches up her face and is very displeased. When she is hungry enough she’ll take about 2-3 ounces. Between her distaste for formula and her anxiety about other people holding her–I am very uneasy about the prospect of having to leave my darling baby.
Interestingly though, no one is putting pressure on me to do the RAI. I’ve made my own timeline based on our medical insurance. I’m scheduled to switch insurance in May so I was hoping to finish my treatment on my “good” insurance. If only money weren’t an issue I would feel fine about putting off the RAI a little longer. But it seems absolutely insane that money is what is driving this very unnatural early weening. And I wonder if my baby senses how I dread leaving her with someone else every time I hold her? I’m so conflicted. Part of me wants to get it over with so I can stop stressing about it. And part of me wants to put it off as long as I can so I don’t have to think about it and my life and my children don’t have to be affected. Sigh. My girls haven’t been sleeping well lately either. Is it intuition? And if it is, is there any way to shield my girls from my anxiety or my crazy logic or my paranoia? Or are we just doomed as women to be like our moms?
