Jessicarrot

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 TREATMENTS

Radiation 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…

New highlight of my day– Hila singing a made-up song while playing with her stuffed animals.  Two of them are dogs and while singing, she has one dog smell the other’s bottom.  LOL.  Kids are way better than laundry.

I am just catching up to a mountain of laundry.  It has been weeks since my husband even looked in his underwear drawer to find clean undies.  The clothes have been haunting me.  I get them cycled through every week, but for the past few weeks they have stayed piled on both chairs in my room.  The whites have been heaped in a basket on the ottoman.  Every time I’d conquer the clothes on my chairs it would be laundry day again and new clothes would pile there waiting for their turn.  Something amazing happened Tuesday night when I got home from shopping though.  The clothes were folded in baskets.  (We have a little basket for each member of the family for clean clothes).  It was more exciting to me than getting my new Wii Fit for my birthday.  My husband actually folded the laundry for me!  Hooray!  The cycle is broken.  I just pulled the last load of towels out of the dryer to fold and something plastic bounced out.  I always set the towels on sanitize so I was so surprised when I found one of Hannah’s bottles had gone through a full sanitize cycle and dryer cycle without me noticing it.  Weird.  I think its cleaner than if I had put it through the dishwasher…  And sadly that is the highlight of my day. 

We cherish too, the Poppy red
That grows on fields where valor led,
It seems to signal to the skies
That blood of heroes never dies.

Moina Michael

My “present” from birthday alarm.com

How I approach life and how I appear to others

You are a natural diplomat, reasonable, tolerant, fair,
always willing to listen to varying viewpoints, and ready to see
the other side of an issue. Even if you strongly disagree with
someone, you will try to find points of similarity and agreement
rather than emphasizing the differences. You often avoid taking
an extreme or one-sided stance on anything. You have a strong
desire for harmonious and pleasant relationships, and express a
spirit of cooperation, compromise, friendship, and fairness. You
very much want to be liked and because of your need for approval
and acceptance, you are easily influenced by others’ opinions,
especially when young. You so much want to please that often you
will suppress your own intense or unpleasant feelings in order
not to offend others. Sometimes your politeness is interpreted as
phoniness or wishy-washiness.

My personal motivation

You are, in many ways, an eternal child. Your mind is bright,
alert, curious, flexible, playful, and always eager for new
experiences – and your attention span is often quite brief. You
grasp ideas quickly and once your initial curiosity has been
satisfied, you want to go on to something else. You crave
frequent change, variety, meeting new situations and people.

To save money we decided to buy our kitchen cabinets and countertops at Ikea. It is much cheaper because we have to pick up the cabinets and assemble them ourselves. We also had to measure and design the kitchen ourselves. Here are some things we have learned in the process:

1. Measure 5 or 6 times before you buy

2. Measure 5 or 6 times before you cut

3. Don’t trust designing software

4. When making a kitchen order through Ikea, make note of which items are “self-serve” because if you don’t pay attention you will get home without purchasing any drawer pulls.

5. It takes twice as long to jerry-rig a kitchen sink as it does to actually install the kitchen sink

6. It is going to take forever to assemble all those cabinets

7. It is going to take forever to install all those cabinets

8. After we tally up the cost of gas for two trips to ikea and the time spent assembling and installing all these cabinets…we probably aren’t saving any money.

9. It looks so easy in the video

10. If we ever get this done, it will be beautiful

If there was somehow a bonehead test people would have to pass in order to drive a car, I believe there would be a lot fewer cars on the road. There are three people I can think of who I’d like to take off the road…

1. Landcruiser lady–When I was 17 or 18 I was just learning how to drive a manual transmission and I talked my mom into letting me drive a truck she had borrowed from a friend. She went with me and we were returning it (the friend later became my father-in-law) I was having a lot of trouble at a stop sign getting the truck to move. I had stalled about 4 times and was really flustered. The 5th attempt resulted in a horrifying loud thump. My immediate thought was that I had somehow made the engine drop right out of the truck. My mom didn’t even know what happened. Then this lady was at her window knocking and saying I had backed into her. We both didn’t know how that could have happened, but taken off guard my mom exchanged insurance information with the woman driving a toyota landcruiser with a totally jacked up front bumper. We inspected the damage to the borrowed truck, and the rear steel bumper was completely crushed in the middle. Putting the truck in reverse is pretty hard to do by accident. And like I said the thump happened when we were stopped at a stop sign. It never entered our minds until afterward that the landcruiser woman could have lied to us. She had a cellphone, but didn’t call the police. Landcruiser woman called us several times saying that the damage to her bumper was over $1000 and we needed to pay up. My mom went to the beach and left me to deal with the woman and get my first lesson in being a grown up. My future father-in-law couldn’t have been more understanding. He even went with me to meet Landcruiser woman at the police station. He stuck up for me when Landcruiser woman tried to fabricate this story about how I threw the truck in reverse and crashed into her. In the end, the police officer told us that we’d both be fined for not reporting the accident and since my mom was in the car and she was a whitness for me Landcruiser lady was out of luck. So, frustrated, Landcruiser lady stormed off.

2. Drunk who hit my sister–A few years ago my little sister was driving my mom’s car and was stopped at a stop light when a drunk woman slammed into her, totalling my mom’s car. Jamie was fine, mostly except for a messed up back. The car was of course paid off. It took weeks of fighting with the drunk woman’s insurance company to get any kind of payment for the totalled car. This all happened on the heals of all kinds of financial upheavel from a traumatic year of underemployment for my dad. There was no question who was at fault, the police took the drunkard off in handcuffs. But my parents refused to sue her. I hate litigation and I even wanted them to. They had to buy a new car, add a car payment they weren’t ready to take on and besides, I wanted that drunk woman to really learn a lesson. She could have easily killed someone. But my parents, moral and good as they are wouldn’t even think of it. Hopefully the drunk learned her lesson anyway.

3. Heavyset woman in stiletto heels–I just got an email from my friend Tarsha saying that she is being sued for over $2million dollars. Tarsha and her husband are two of the most honest, hardworking, charitable people I know. They saw an accident happen on vacation, a horrific accident and somehow the idiot who crossed the median, slammed into a logger truck (tipping it over sending logs everywhere) and lived has decided to sue my friends. She dug up some “whitness” a month after the accident who says she saw my friends force her off the road. What. An. Idiot. Who in the #*%@! sues working-class people for $2 million dollars? I guess if I’m going to give heavyset woman in stilettos the benefit of the doubt, she might have suffered some brain damage in her accident. From my friend Tarsha’s blog:

“Here’s what’s going on now, nearly 2 years later. We went to a deposition in Danville on April 15th. While my hubby was allowed to sit in on the whole thing, I had to stay out in the waiting area. I was very happy to see the lady that was in the accident looking practically normal. I was truly happy… my hubby and I had stood in the middle of the median on that hot day, with critters jumping up and down around my legs (I HATE CRITTERS) and said a prayer for her. It was a long, fervent prayer that the person in the car would live and have as normal a life as possible. Her life must be pretty close to normal, because she was a rather heavy set person for such a small frame and she had on stilletto heels — I don’t even wear those!!! We still continue to pray for her: she still needs it.”

There was an actual whitness that my friend Tarsha talked to on the day of the accident who saw the whole thing from two cars behind Tarsha’s. But he “didn’t want to get involved” and wouldn’t make a statement to the police. Tarsha is looking for that whitness and would appreciate any help she can get from the internet.

“I need you to pass this message on to as many people as you possibly can to get my message out. I need this blog to make it’s way to Tunica, Mississippi, to the home of Charita Greene. She is (or was) the girlfriend of the man that told me he saw the accident. He seemed to not want to get involved for whatever reason. Maybe he was trying to avoid the police… I don’t know. What I do know is that if he were willing to write a statement and get it notarized or produce a signed affidavit, he wouldn’t have to come back to Virginia and deal with the good ol’ boys at the DPD and he would help us out. If you happen to know this person, e-mail me at missusjoy@gmail.com and let me know so that I can plead my case to her. Or maybe my e-mail can make it’s way to GMA or 20/20 and maybe someone there will take pity on us and help us find justice.”

I met with my Nuclear Medicine Dr. today to schedule my RAI. I will do a dosimetry study starting June 23 (Happy Birthday Miki) through the 27th, and the 27th is when I will get the treatment dose. I’ve been reading a lot on the thyca listserve about this process and everyone dreads the low-iodine diet. My Dr. is not a big believer in it so he left it up to me to decide if I wanted to do it. Hmmm. Do I want to give up seafood, dairy, and all packaged, processed or resturant foods? Tempting. Actually I probably will avoid most of those things, but I guess I don’t have to go nuts about it. The dosimetry study is interesting because there are very few places in the country that offer it. And its usually for people with very advanced cases. They give you a very low dose of radio-iodine and then monitor how your body processes it for a week with blood draws and scans. Usually they only do this for advanced cases to find out the maximum amount of radioactive iodine their body can handle. My cancer was contained in the thyroid so I will most likely get the standard dose but my Dr. wants me to do the study for future reference. Meaning, if I have a reacurrance. I would really rather not do this because it extends the time away from my kids by a week. But I am blessed to have a very supportive family. My SIL in is sending my neice Ellie to come and help me for two weeks, and my mil and mom have offered to help me. BJay thinks that it is important to know exactly how my body handles the radiation. I think he is right. So it looks like we have a plan.

Things I have to look forward to:

1. Going “hypo”–going off my thyroid replacement hormones

2. Bloating, irratability, foggy-headedness (Honestly can’t a woman catch a break? Is there anything we have to go through that doesn’t involve those symptoms?)

3. Being away from my babies.

4. Not being able to eat anything good.

5. Getting lit (J/K I mean being radioactive)

6. Possible loss of taste (Well I might not have had that to begin with–but this is the actual taste buds…temporarily)

7. Hairloss (But not like chemo, more like post-pardom hairloss, and it will come back)

8. Sleeping alone for at least 2 weeks

9. Feeling pretty crappy until the hormones stabilize again in my system

10. Sleeping more

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.