Thursday, November 30, 2006
Tuesday, November 21, 2006
Friday, November 10, 2006
One blurb
The rain has started. It rains everyday now. Thank God. I thought my garden would not make it, but with this kind of consistent rain everyday, I have new hope. The vegetable garden I started as a community cooperative garden to work hand in hand with the malnutrition program here, and yet also be an income generation community cooperative, I think will have a chance to survive afterall.
Chemo Day
10/04/06 Chemo day. I am as we speak in a meeting with the hospital medical director, the chief nurse of the hospital, the chief nurse of pediatrics, Sara – the PIH pediatrician, and myself, I am in an ethical dilemma in my head – as they all sit here discussing whether or not we should do chemotherapy – I am typing. The doctor I work with who was trained at Dartmouth and is now here running pediatrics, wants to start chemo on this girl. Today. She wants to start today. She is anxious because this girl has sat here since this summer with a tumor that at this point is probably as large as her head, sticking out from the side of her head. It sticks out from her right ear and cheek and protrudes out in a way that people just don’t see in the U.S.
Of all soft tissue tumors I hear that rhabdomyosarcoma is the most common in 2-6 year olds and 11-23 years old. It commonly occurs in the head and neck as it is in this girl but can occur in other parts of the body as well. It is important to be able to stage a tumor like this – so I learn. If we were in America staging would have included a bone marrow biopsy and other tests. Here we just did a CT scan and to her doesn’t look like any metastases, but we don’t have sophisticated tools like U.S. so can’t be sure. In U.S. she would be treated with chemo, radiation and possibly surgery. This would be true even for a very advanced stage that has metastasized. Under the best of conditions, there is a fairly good chance to cure this cancer. But it really depends on how advanced the disease is and how good care is. We don’t have anyone in this room who is expert at giving chemo care. No district hospital in Rwanda has every given chemotherapy, and no where in Rwanda is radiation available. Not even the best private hospital built by the Jordanians in Kigali. And we don’t have a hospital set up to provide intensive care. One option is not to treat her cancer. We know that if we don’t treat it it will eventually kill her. It’s already growing quickly and will invade her meninges and invade her airway or advance to her brain in some way. She has already lost hearing and sees double on the side of her face where the tumor is. It creeps in and around cranial nerve five and is her sinus covernosum.
The other option is to do chemotherapy and if so, whether or not we want to do it here. A pedi oncologist in the U.S. has been advising her from the states about how to give it. And she has somewhat modified the protocol knowing we can’t modify side effects and risks. So obviously chemo has a lot of risks and very possible we could kill her. And the father/child have been talked to about it and given their understanding, the dad wants to do whatever they can to help her. We told him:
Chemo drugs are toxic.
Cure rate is 60-70%, in the United States, with the best of care, if no metastases already – and this rate may differ given our resources and staff here.
Her treatment would be 3 medicines together (Dactinomycin, Vincristin, Cycolphosphamide), each given on same day each week for 12 weeks.
Dr. Adolphe right now is saying (in French, all my communication with staff here is about 85% in French, the other 15% speak English – but this meeting is French):
Not treating is not an option…Treat her here or somewhere else are our options…
If possibility to send her somewhere else w/ expert care than that is what should be done…
If not then we are all she has…
We aren’t the U.S. and it is unrealistic to compare…Bcs. There isn’t anything here at that level…in this entire country…(he seems somewhat exasperated when saying this, as if the sibling who is not performing as well in math is constantly getting compared to the sibling that does perform well in math and the sibling says – well I’m not him! I’m different – I have other strengths – but that’s not one of them – can we stop comparing)…he continues….
So we have to look at what we have here, he says.
Modeste (Chief Nurse of the Hospital):
All examsand labs can be done here at Rwinkwavu. Every hospital in the world has had to start somewhere. Everywhere had to have the first time they did something. This is ours. This is Rwanda’s district hospitals. Even places where they never did chemo, they had a point to start. There is no other option.
King Faisal sends a lot of patients home with tumors like this because they say it is too advanced and they don’t treat.
I’ve already sent a lot of patients there to be treated that are sent away.
Blaise:
Don’t have way to test:
K+
Na+
Sara:
I think we can do it just as well here as CHK…we care about her here…we are committed to her case…that means a lot….Most important is CBC 2xweek, creatinine, LFT’s once a week.
Lucy:
It would be better to send her somewhere else with the top of the line medical options and training. But we can’t keep doing that either.
Decision: Than let’s do it.
Want to cry. Don’t want to do it. Would prefer to send her to K.F. but if they are going to do this here, if that is the group decision, then I can’t watch with my hands tied. Because I have better experience here than any nurse. And to me it is unconsciousble to watch them flub up while I say, “I told you you couldn’t succeed.” So I am going to have to help. And then I think of the work involved, teaching how to do IV’s, hygiene, teaching how to keep track of constipation, urine output, hair falling out. All the –penias: pancytopenia, neutropenia…We will have to watch her closely I reinforce.
I told them, since we are a district hospital, and the first to do this, it would be ideal that our first attempt at chemo be a success. But in this case, I have very little hope that this case is going to be a success.
So the decision is yes, let’s do it. 5 people Blaise, Modeste, Dr. Adophe, Christine, Dr. Sara, are all a yes.
So 5:1.
I have said my peace. I have said I have very little hope that this is going to be a success. I guess the hard thing is, is that I hear this 60-70% success rate, and the statistics are U.S. statistics, and I want to say, docs in the U.S. don’t see kids like this. (see photo) and so my hope is 0% that this is going to work.
I guess that’s the big problem. I don’t think this is going to help. I think it’s too advanced for treatment to help. So we are going to kill her slowly with our chemo. That’s how I feel. At the same time, if the decision is to treat, I’m not going to not help. And not helping her is not an option either. Like I said, the best choice is to send her somewhere with excellent care. Like the U.S.
Maybe I will be the one who ends up looking like the fool. For being so overly concerned. For telling Sara I am dreading this. Maybe Sara’s decision will cure her. I hope so. I swear to God I hope so. I hope I’m wrong.
Only time will tell. I will deal with this one with the following rules. Generosity of knowledge, love, protection. Discipline of taking care of her and educating the nurses.
Patience with the process. Exertion to keep at it and keep doing a good job. Meditation and prayer that the nurses here really take care of her and that she heals. Knowledge that sometimes we are put in positions we don’t want to be in, and yet we are, and remember the world is much bigger than here. Transcendental knowledge that I am not even aware of. A higher reality and even than this another reality. Of the people outside Rwanda and Africa. Where things are run completely differently. And who is to say what the right choice is, except God.
PS I gotta’ go read up on chemo now. Since I’ve never started it before. I’ve just participated in the process and with patients and the care around them. I’ve never given chemo myself.
Of all soft tissue tumors I hear that rhabdomyosarcoma is the most common in 2-6 year olds and 11-23 years old. It commonly occurs in the head and neck as it is in this girl but can occur in other parts of the body as well. It is important to be able to stage a tumor like this – so I learn. If we were in America staging would have included a bone marrow biopsy and other tests. Here we just did a CT scan and to her doesn’t look like any metastases, but we don’t have sophisticated tools like U.S. so can’t be sure. In U.S. she would be treated with chemo, radiation and possibly surgery. This would be true even for a very advanced stage that has metastasized. Under the best of conditions, there is a fairly good chance to cure this cancer. But it really depends on how advanced the disease is and how good care is. We don’t have anyone in this room who is expert at giving chemo care. No district hospital in Rwanda has every given chemotherapy, and no where in Rwanda is radiation available. Not even the best private hospital built by the Jordanians in Kigali. And we don’t have a hospital set up to provide intensive care. One option is not to treat her cancer. We know that if we don’t treat it it will eventually kill her. It’s already growing quickly and will invade her meninges and invade her airway or advance to her brain in some way. She has already lost hearing and sees double on the side of her face where the tumor is. It creeps in and around cranial nerve five and is her sinus covernosum.
The other option is to do chemotherapy and if so, whether or not we want to do it here. A pedi oncologist in the U.S. has been advising her from the states about how to give it. And she has somewhat modified the protocol knowing we can’t modify side effects and risks. So obviously chemo has a lot of risks and very possible we could kill her. And the father/child have been talked to about it and given their understanding, the dad wants to do whatever they can to help her. We told him:
Chemo drugs are toxic.
Cure rate is 60-70%, in the United States, with the best of care, if no metastases already – and this rate may differ given our resources and staff here.
Her treatment would be 3 medicines together (Dactinomycin, Vincristin, Cycolphosphamide), each given on same day each week for 12 weeks.
Dr. Adolphe right now is saying (in French, all my communication with staff here is about 85% in French, the other 15% speak English – but this meeting is French):
Not treating is not an option…Treat her here or somewhere else are our options…
If possibility to send her somewhere else w/ expert care than that is what should be done…
If not then we are all she has…
We aren’t the U.S. and it is unrealistic to compare…Bcs. There isn’t anything here at that level…in this entire country…(he seems somewhat exasperated when saying this, as if the sibling who is not performing as well in math is constantly getting compared to the sibling that does perform well in math and the sibling says – well I’m not him! I’m different – I have other strengths – but that’s not one of them – can we stop comparing)…he continues….
So we have to look at what we have here, he says.
Modeste (Chief Nurse of the Hospital):
All examsand labs can be done here at Rwinkwavu. Every hospital in the world has had to start somewhere. Everywhere had to have the first time they did something. This is ours. This is Rwanda’s district hospitals. Even places where they never did chemo, they had a point to start. There is no other option.
King Faisal sends a lot of patients home with tumors like this because they say it is too advanced and they don’t treat.
I’ve already sent a lot of patients there to be treated that are sent away.
Blaise:
Don’t have way to test:
K+
Na+
Sara:
I think we can do it just as well here as CHK…we care about her here…we are committed to her case…that means a lot….Most important is CBC 2xweek, creatinine, LFT’s once a week.
Lucy:
It would be better to send her somewhere else with the top of the line medical options and training. But we can’t keep doing that either.
Decision: Than let’s do it.
Want to cry. Don’t want to do it. Would prefer to send her to K.F. but if they are going to do this here, if that is the group decision, then I can’t watch with my hands tied. Because I have better experience here than any nurse. And to me it is unconsciousble to watch them flub up while I say, “I told you you couldn’t succeed.” So I am going to have to help. And then I think of the work involved, teaching how to do IV’s, hygiene, teaching how to keep track of constipation, urine output, hair falling out. All the –penias: pancytopenia, neutropenia…We will have to watch her closely I reinforce.
I told them, since we are a district hospital, and the first to do this, it would be ideal that our first attempt at chemo be a success. But in this case, I have very little hope that this case is going to be a success.
So the decision is yes, let’s do it. 5 people Blaise, Modeste, Dr. Adophe, Christine, Dr. Sara, are all a yes.
So 5:1.
I have said my peace. I have said I have very little hope that this is going to be a success. I guess the hard thing is, is that I hear this 60-70% success rate, and the statistics are U.S. statistics, and I want to say, docs in the U.S. don’t see kids like this. (see photo) and so my hope is 0% that this is going to work.
I guess that’s the big problem. I don’t think this is going to help. I think it’s too advanced for treatment to help. So we are going to kill her slowly with our chemo. That’s how I feel. At the same time, if the decision is to treat, I’m not going to not help. And not helping her is not an option either. Like I said, the best choice is to send her somewhere with excellent care. Like the U.S.
Maybe I will be the one who ends up looking like the fool. For being so overly concerned. For telling Sara I am dreading this. Maybe Sara’s decision will cure her. I hope so. I swear to God I hope so. I hope I’m wrong.
Only time will tell. I will deal with this one with the following rules. Generosity of knowledge, love, protection. Discipline of taking care of her and educating the nurses.
Patience with the process. Exertion to keep at it and keep doing a good job. Meditation and prayer that the nurses here really take care of her and that she heals. Knowledge that sometimes we are put in positions we don’t want to be in, and yet we are, and remember the world is much bigger than here. Transcendental knowledge that I am not even aware of. A higher reality and even than this another reality. Of the people outside Rwanda and Africa. Where things are run completely differently. And who is to say what the right choice is, except God.
PS I gotta’ go read up on chemo now. Since I’ve never started it before. I’ve just participated in the process and with patients and the care around them. I’ve never given chemo myself.
I got malaria
So internet has been out in Rwinkwavu. Sattelite went out of orbit. So with that, has all internet communcition. We have to drive into Kigali if we want an internet connection now. A huge two hour ride pain. So what has happened is that I have just stopped writing, and then in the interim, over this past month, I also stopped taking my malaria meds, only to have my swaggert stubbornness come and bite me in the ass, because I got malaria. I’ve been suffering from it all week. I am just coming into the light again. Of being able to laugh, and walk and eat normally again. A lot of people here get malaria, so it’s no big deal where I am. The poor die from it because they live far away from a health center and they don’t know what signs are what and when they need to get to a hospital or health center for. I on the other hand, just noticed myself getting more and more lethargic. Having less and less energy as the days went boy. Drinking more and more coffee throughout the day thinking it was going to pep me up. Going home to make it. Amping up my coffee consumption to night time too, because I was just so tired. Then sleeping more and more. 9 full hours of sleep and I would still wake up feeling fatigued. I didn’t know what was wrong with me. Then I thought maybe I’m anemic. Maybe I have low iron levels. The food here isn’t always that well varied but I put the thought aside. And then this weekend, after a weekend away with Dr. Sara, and a couple of other PIH staff at this resort hotel on a lake on the other side of the country I just wasn’t feeling well rested. I forced myself up. I jogged. But I was incredibly sleepy after. Not revived. I didn’t talk about it. I talked instead about this bothersome pill esophagitis I got from swallowing my doxycycline without water over a period of a few months and it has what feels like forever burned a hole in my throat. Of course only after I do this do I read the bottle, drink with a full glass of water. And I hear of other accounts of people here who swallowed their doxy at night and went to bed and had this painful esophagitis following. Well then comes Monday, everyone feels all refreshed I said I did too, but inside I didn’t. Inside I wanted to say, “You know, it was nice to get away, but I still feel tired.” And then Monday I had diarrhea, and in a country where I haven’t had really any GI issues…I knew diarrhea was a sign of something. With my fatigue. And I went to the lab and tested myself for malaria. Pricked my own skin, put it on a glass slide. Gave it to the lab tech and she squeezed the purple stain on it. She told me it had to set for 20 minutes so I came back in 20 minutes. She wipes rinses it off w/ water, wipes it dry on the edges, waits for the purple stained part to dry more and then she puts it under the microscope. Malaria + she says. Just 1+ not the 4+ we sometimes see. But it’s there. I ask to see it, and she tries to show me how it is like the text book examples, there are lots of text book examples so I ask her to show me another, she looks for another. Shows me what is supposedly a red blood cell and this little tale like thing inside is the p.falciparum. I say let me give another sample. I wasn’t convinced. I prick myself again. Harder this time. To get a better sample. I hate pricking myself. Don’t know how diabetics do it. But I do, and get a larger blood sample onto the slide. I wait another 30 minutes. Come back. She rinses off the purple stain off the slide. Dries the edges. Waits for the middle to dry by air. Places it under the microscope. And then finds one. A p. falciparum. She gets me the laminated example of pfalciparum trophozoites and shows me how mine matches. She draws a picture for me of the field and where the malaria is. I look. Look for the red blood cell and then match up her picture to the field I am looking at in the microscope, there it is. It looks like one of the samples on the laminated card. P.falciparum there he is. No wonder I have been so fatigued. Feeling so bad lately. Not telling anyone really, but just feeling very fatigued. So the next day, Tuesday, I just conked out. I really felt awful. Like the worst flu ever. My body ached. Muscles ached. Spine ached. Head ached. And for the next two days I was just sick as sick can be. Threw up, nausea. And now, third day on anti-malarial meds and I am up, appetite returned, not as much pain, almost 0 and I can do other things, read, write. Think. So I guess I had to learn the hard way as it seems I always have to: malaria prophylaxis, yes, you have to take it if you don’t want to get malaria here.
Belated posting...
So once again, it has been forever since I’ve written. So much going on. So much to do. An endless task. Sisyphean is this work. Month 6 and I will admit I am both encouraged and discouraged. There are changes in care. Small ones. There are children who live as a consequence of therapeutic milk given to advance them quickly from a state of severe malnutrition to an improved state which is more viable to life. We do that. We give antibiotics that didn’t exist here before, a) because there were no paid staff in this part of Rwanda to give them, b) there was not enough money provided by the government to buy the medicines they needed even if they had had well trained Rwandan doctors out here. They had neither. So most everyone in those circumstances around here just died. That’s why they are so grateful to the doctors for their care. Yesterday there was a large ceremony to thank one of the PIH doctors for saving his life. Dr. Henry (as patients call him here) put him on ARV’s and TB meds and although he came in like all the rest of them, on deaths door, an unimaginably low weight, wasted, dysentery, fevers, infections, cough, dying, he was HIV+ and once on meds, well, now, he is throwing a party for Dr. Henry, giving him his best cow. And the whole village was there. To celebrate. Love they said. That this is a love cow was how it was translated to us. For what Henry did. Because prior to Henry being out here, this man said in his toast, he knows he would have died. And the poignant truth is, he would have. Without ARV’s, without someone here to do the tests and run them, and send them to Kigali to find out what the CD4 count is in order to better assess where the person is. To treat other opportunistic infections that come along the way as a result of the process, well trained docs can take care of this kind of patient, and actually create a life for this person, their health will return.
That is the hero side of this work. That is the side where a presence of intelligent individuals who have had the opportunity of education and resources, can come here, and truly see the power of their contribution. It is not something that should give anyone a big ego, but I also think the importance of that contribution should be acknowledged. It is medicine and treatment and docs and supervision, one patient at a time.
I do wonder if one day people will look back on the turn of the century, 1990-2050 and we will seem antiquated and barbaric to the future. They will look back on us and they will see not Tuskeegee Syphilis Trial, or using prisoners for medical experiments as the barbaric inhumane things we see them as now, but they will look back and see countries ignoring all these poverty stricken places and for all intents and purposes, turning their backs. And I wonder if in the future, turning backs on the world’s dying will be seen as just as crude and inhumane as medical experiments on prisoners. Or torturing animals. Ignoring will be just as bad as killing.
I do think these areas can be helped. I do believe that the local governments need to be a part of this decision making process of how to improve health care, and agriculture and economies. As painful as that may be for people who are used to areas with quicker internet connections and more consistent electricity and a history of well run democracies. I see it as an essential contribution we have to make to humanity now.
But I will admit, the work does get tiring. It is one small drop at a time. And you look at what’s on your plate, and although there are patients celebrating doctors by giving their best and only cow, there are other times that are seemingly hopeless. If those with more resources both within this country and outside of it, don’t start pitching in, the world at large will be in trouble. It’s the rich people and companies who are not concerned about contributing to the solutions that I think just don’t see this. I feel like, give me two days, with any one of these people who would rather live a life of money and I will show them the importance of living a life with a sense of message.
That is the hero side of this work. That is the side where a presence of intelligent individuals who have had the opportunity of education and resources, can come here, and truly see the power of their contribution. It is not something that should give anyone a big ego, but I also think the importance of that contribution should be acknowledged. It is medicine and treatment and docs and supervision, one patient at a time.
I do wonder if one day people will look back on the turn of the century, 1990-2050 and we will seem antiquated and barbaric to the future. They will look back on us and they will see not Tuskeegee Syphilis Trial, or using prisoners for medical experiments as the barbaric inhumane things we see them as now, but they will look back and see countries ignoring all these poverty stricken places and for all intents and purposes, turning their backs. And I wonder if in the future, turning backs on the world’s dying will be seen as just as crude and inhumane as medical experiments on prisoners. Or torturing animals. Ignoring will be just as bad as killing.
I do think these areas can be helped. I do believe that the local governments need to be a part of this decision making process of how to improve health care, and agriculture and economies. As painful as that may be for people who are used to areas with quicker internet connections and more consistent electricity and a history of well run democracies. I see it as an essential contribution we have to make to humanity now.
But I will admit, the work does get tiring. It is one small drop at a time. And you look at what’s on your plate, and although there are patients celebrating doctors by giving their best and only cow, there are other times that are seemingly hopeless. If those with more resources both within this country and outside of it, don’t start pitching in, the world at large will be in trouble. It’s the rich people and companies who are not concerned about contributing to the solutions that I think just don’t see this. I feel like, give me two days, with any one of these people who would rather live a life of money and I will show them the importance of living a life with a sense of message.
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