Being supportive at home and from a distance
January 13, 2012 6:03 AM Subscribe
My sweet boyfriend's dearest friend has been diagnosed with Hodgikn's Lymphoma. Last time we saw him he was complaining about a lump in this throat, and saying they didn't know what it was but not to worry, he was probably just getting over an infection. Typical blase doctors, oh yeah forgot to mention, he is five years into a ten year prison sentence for some youthful foolishness.
My boyfriend was pretty much devastated ,not after the conviction, but at the sentencing with the mandatory bid. Now after his friend persisted and they ran some tests leading to the diagnosis, he is terrified that after finally reaching the halfway mark, his friend may suffer terribly and ultimatly die behind bars.
My questions are, have you or someone close to you suffered through this kind of lymphoma? What should we expect?
Have you had a loved one in jail or been sick in jail? Is there a way we can help make sure he is getting decent care?
He has been transferred from a facility in Panama City to one with medical facilities in Orlando. We don't have his new contact info yet. We try to write one every week or so and go see him about 3 times a year, but we don't really know yet what visiting priviledges are going to be like at this facility.
How can we support him through mail? (We can send approximately five pages a letter, no maps or anything that appears to be instructions on anything that may possibly be used in a criminal activity. We can also send new, unwrapped books via Amazon)
Of course, I'm struggling also to support my bf, its a hard thing to process and deal with from this distance. I have met his friend after I got on the visitor's list, but I have not known him outside this context.
My boyfriend was pretty much devastated ,not after the conviction, but at the sentencing with the mandatory bid. Now after his friend persisted and they ran some tests leading to the diagnosis, he is terrified that after finally reaching the halfway mark, his friend may suffer terribly and ultimatly die behind bars.
My questions are, have you or someone close to you suffered through this kind of lymphoma? What should we expect?
Have you had a loved one in jail or been sick in jail? Is there a way we can help make sure he is getting decent care?
He has been transferred from a facility in Panama City to one with medical facilities in Orlando. We don't have his new contact info yet. We try to write one every week or so and go see him about 3 times a year, but we don't really know yet what visiting priviledges are going to be like at this facility.
How can we support him through mail? (We can send approximately five pages a letter, no maps or anything that appears to be instructions on anything that may possibly be used in a criminal activity. We can also send new, unwrapped books via Amazon)
Of course, I'm struggling also to support my bf, its a hard thing to process and deal with from this distance. I have met his friend after I got on the visitor's list, but I have not known him outside this context.
I'm so sorry for you, your boyfriend, and his friend.
If he does indeed have a terminal illness, he might be able to get his sentence commuted. The purpose of the sentence was not to keep him behind bars for the rest of his life. If it was indeed a youthful indiscretion he might be able to find some mercy in the system.
Good luck to you.
posted by alms at 6:26 AM on January 13, 2012 [2 favorites]
If he does indeed have a terminal illness, he might be able to get his sentence commuted. The purpose of the sentence was not to keep him behind bars for the rest of his life. If it was indeed a youthful indiscretion he might be able to find some mercy in the system.
Good luck to you.
posted by alms at 6:26 AM on January 13, 2012 [2 favorites]
In some states, the ACLU has prison health projects (where they monitor the quality of care, and advocate on behalf of the inmates). They might be able to give you some information about standards of care, and any how you can help him.
posted by kimdog at 6:38 AM on January 13, 2012 [3 favorites]
posted by kimdog at 6:38 AM on January 13, 2012 [3 favorites]
Much about his treatment will depend on his overall health (absent the lymphoma) how he is staged and how he responds to the various treatment options - chemo, radiation or both. It looks as though HL is treatable, and fairly successfully so. The Leukemia and Lymphoma Society has a wealth of information that will be useful to all of you.
posted by jquinby at 7:19 AM on January 13, 2012
posted by jquinby at 7:19 AM on January 13, 2012
Best answer: All I know about compassionate release from prison is what I've seen on episodes of LAW AND ORDER, so I'd better not speak to that.
But I have had personal experience knowing someone in treatment for non-Hodgkin's lymphoma, which is similar; he had a similar sort of "thought it was something benign, went to the doctor, and it had been going on a long time" diagnosis -- he had a cough for a month and finally went to the ER thinking it was just bronchitis or something, but the doctors found a tumor in his chest the size of a grapefruit and were all "we are admitting you into the ICU right this second." I didn't meet him until a year later, when I was hired as the stage manager for a play he was starring in. He was still in treatment -- in fact, we had to take a month off during our run so he could go in for another round of chemo -- but he still managed to get through starring in a very physically grueling show (he had to learn rope tricks for the show, and I heard that sometimes in the hospital he'd practice by trying to lasso his chemo drip bag). Ten years later he is in total remission and running the theater company in question and is pretty much a force of nature.
So the actual treatment could suck -- but the prognosis could be very good, even if you didn't catch it until late.
posted by EmpressCallipygos at 7:56 AM on January 13, 2012
But I have had personal experience knowing someone in treatment for non-Hodgkin's lymphoma, which is similar; he had a similar sort of "thought it was something benign, went to the doctor, and it had been going on a long time" diagnosis -- he had a cough for a month and finally went to the ER thinking it was just bronchitis or something, but the doctors found a tumor in his chest the size of a grapefruit and were all "we are admitting you into the ICU right this second." I didn't meet him until a year later, when I was hired as the stage manager for a play he was starring in. He was still in treatment -- in fact, we had to take a month off during our run so he could go in for another round of chemo -- but he still managed to get through starring in a very physically grueling show (he had to learn rope tricks for the show, and I heard that sometimes in the hospital he'd practice by trying to lasso his chemo drip bag). Ten years later he is in total remission and running the theater company in question and is pretty much a force of nature.
So the actual treatment could suck -- but the prognosis could be very good, even if you didn't catch it until late.
posted by EmpressCallipygos at 7:56 AM on January 13, 2012
Response by poster: Thanks everyone for the responses so far.
He is in the FL corrections system, recently moved to RMC main unit. The RMC rather recently opened a cancer care center.
I was also able to find a performance survey which seems marginally promising. The excert of the conclusion below is positive and I feel a bit better about its veracity due to the conclusion for the adjoining RMC West being not nearly as glowing.
"Medical records at the RMC Main Unit were very well organized, data entry efforts were timely and accurate, and administrative documents were appropriately maintained. Review of food service areas revealed no negative findings. Staff appeared to be knowledgeable about procedures; all areas on the compound were clean and neat. Interviews with inmates, nursing staff, and security staff were consistently positive.
The institutional staff provided good clinical management and monitoring of inmates. It was evident that security staff works very well with medical staff to ensure inmates receive the care they need. Overall the clinic staff, including medical and administrative, demonstrated their dedication to providing the required health care to the inmate population."
posted by stormygrey at 8:07 AM on January 13, 2012
He is in the FL corrections system, recently moved to RMC main unit. The RMC rather recently opened a cancer care center.
I was also able to find a performance survey which seems marginally promising. The excert of the conclusion below is positive and I feel a bit better about its veracity due to the conclusion for the adjoining RMC West being not nearly as glowing.
"Medical records at the RMC Main Unit were very well organized, data entry efforts were timely and accurate, and administrative documents were appropriately maintained. Review of food service areas revealed no negative findings. Staff appeared to be knowledgeable about procedures; all areas on the compound were clean and neat. Interviews with inmates, nursing staff, and security staff were consistently positive.
The institutional staff provided good clinical management and monitoring of inmates. It was evident that security staff works very well with medical staff to ensure inmates receive the care they need. Overall the clinic staff, including medical and administrative, demonstrated their dedication to providing the required health care to the inmate population."
posted by stormygrey at 8:07 AM on January 13, 2012
Best answer: David Rakoff (essayist, memoirist, This American Life contributor) writes about having and being treated for Hodgkin's when he was 22 in his book Fraud - Rakoff's not for everyone, but it *is* a book you could send new and unwrapped from Amazon. I think he's really funny and often touching, but he's got a pessimistic gay Canadian secular Jew sensibility that does not appeal to everyone (the Amazon reviews will most likely give insight into whether your boyfriend's friend would like it or not). And the cancer essay is only one of maybe 15 in the book - the rest are about other random topics.
(For what it's worth, one thing I remember from Rakoff's essay is that people keep telling him Hodgkin's is the best kind of cancer to get!)
posted by mskyle at 8:50 AM on January 13, 2012 [1 favorite]
(For what it's worth, one thing I remember from Rakoff's essay is that people keep telling him Hodgkin's is the best kind of cancer to get!)
posted by mskyle at 8:50 AM on January 13, 2012 [1 favorite]
Best answer: If I had a friend in state prison with a life-threatening illness, I would not only write to my friend but if there was any issue with his medical care I would write to the doctor, the medical chief, and/or the warden. I would want the system to know that the person had friends watching out for him and his medical care. If there was a problem that was not resolved I would speak with the ACLU or with other local advocates/lawyers.
Also remember that your friend doesn't have access to the internet, so I would be sending him (totally reliable up to date and not too voluminous) information about his condition so that he can participate in his health care and can understand if he is getting the recommended care.
posted by ClaudiaCenter at 9:02 AM on January 13, 2012 [3 favorites]
Also remember that your friend doesn't have access to the internet, so I would be sending him (totally reliable up to date and not too voluminous) information about his condition so that he can participate in his health care and can understand if he is getting the recommended care.
posted by ClaudiaCenter at 9:02 AM on January 13, 2012 [3 favorites]
Best answer: I hate to say this, but realistically he may be far, far better off in the prison system with access to a dedicated cancer ward than outside the prison system with no insurance. For real.
posted by DarlingBri at 2:52 PM on January 13, 2012 [2 favorites]
posted by DarlingBri at 2:52 PM on January 13, 2012 [2 favorites]
Response by poster: DarlingBri, I had the same exact thought. Literally all he has to do is take care of himself, the prison is obligated to give him sound medical care, and thankfully he can concentrate on that without amassing incredible debt.
posted by stormygrey at 5:46 PM on January 13, 2012
posted by stormygrey at 5:46 PM on January 13, 2012
My best friend is a Physician's Assistant in a prison clinic. I visited her today, and asked her your question. She had so much to say on the topic that I had to take notes! So here goes:
1. You can call and write letters. She said, "It would never have occurred to me that you could just call a prison and ask to speak to someone, but you can." You can call and firmly ask to speak to the Health Unit Manager or the Health Unit Director. She said that her Health Unit Manager regularly comes to her and says things like, "So-and-so's mother called. Will you double-check that he got that test/ got his new meds / had that minor procedure he was supposed to?" So this is a tool you have. If there are things you know your friend is supposed to have done (blood tests, follow-up treatments, etc) calling to make sure they happen will make a difference.
2. Don't be afraid to call your state ombudsperson, senators and representatives. Again, it is not uncommon for the Health Unit Manager to say, "So-and-so's senator is on the phone. Can we possibly get so-and-so that new treatment?"
3. Call on organizations that have a presence in the prison system, like the American Friends Service Committee (AFSC), if you need help with advocacy or negotiating the system. She says, "The AFSC is a total pain in my butt...and by that, what I mean is, they are very very effective at what they do."
4. If you don't know what treatment your friend is supposed to be getting but suspect it may not be adequate, you can look at medical articles at uptodate.com or emedicine.com that outline the standards of care. She says you may need someone with medical knowledge to help you read and interpret these websites, but then you will know what the standard treatment is and can evaluate whether your friend is getting it. (For instance, the standard of care might be "after chemo, the patient should have CAT scans every X months to monitor the tumor site," and it's important that you know this and can apply pressure to make sure it's followed.)
5. Your friend can't demand "community standards of care" but can demand "Evidence-based medicine standards of care." This is strong language you and he should be aware of, so that you can make his doctors aware that this standard of care is what you expect.
6. Your friend may get substandard care not because the doctors are malicious or uncaring, but because most likely they are incompetent--prison clinics do not tend to attract physicians who have better options available to them. It is possible that the doctor(s) caring for your friend will not know what they are supposed to be doing for him. In this case, making sure they are aware of the standards of care, and monitoring closely, is vital.
I hope this is helpful. If you have any further questions at any point in this process, feel free to send me MeFiMail. I am happy to ask my friend more questions, and she is more than happy to answer them. Best of luck to you and your friend.
posted by not that girl at 4:01 PM on January 14, 2012 [3 favorites]
1. You can call and write letters. She said, "It would never have occurred to me that you could just call a prison and ask to speak to someone, but you can." You can call and firmly ask to speak to the Health Unit Manager or the Health Unit Director. She said that her Health Unit Manager regularly comes to her and says things like, "So-and-so's mother called. Will you double-check that he got that test/ got his new meds / had that minor procedure he was supposed to?" So this is a tool you have. If there are things you know your friend is supposed to have done (blood tests, follow-up treatments, etc) calling to make sure they happen will make a difference.
2. Don't be afraid to call your state ombudsperson, senators and representatives. Again, it is not uncommon for the Health Unit Manager to say, "So-and-so's senator is on the phone. Can we possibly get so-and-so that new treatment?"
3. Call on organizations that have a presence in the prison system, like the American Friends Service Committee (AFSC), if you need help with advocacy or negotiating the system. She says, "The AFSC is a total pain in my butt...and by that, what I mean is, they are very very effective at what they do."
4. If you don't know what treatment your friend is supposed to be getting but suspect it may not be adequate, you can look at medical articles at uptodate.com or emedicine.com that outline the standards of care. She says you may need someone with medical knowledge to help you read and interpret these websites, but then you will know what the standard treatment is and can evaluate whether your friend is getting it. (For instance, the standard of care might be "after chemo, the patient should have CAT scans every X months to monitor the tumor site," and it's important that you know this and can apply pressure to make sure it's followed.)
5. Your friend can't demand "community standards of care" but can demand "Evidence-based medicine standards of care." This is strong language you and he should be aware of, so that you can make his doctors aware that this standard of care is what you expect.
6. Your friend may get substandard care not because the doctors are malicious or uncaring, but because most likely they are incompetent--prison clinics do not tend to attract physicians who have better options available to them. It is possible that the doctor(s) caring for your friend will not know what they are supposed to be doing for him. In this case, making sure they are aware of the standards of care, and monitoring closely, is vital.
I hope this is helpful. If you have any further questions at any point in this process, feel free to send me MeFiMail. I am happy to ask my friend more questions, and she is more than happy to answer them. Best of luck to you and your friend.
posted by not that girl at 4:01 PM on January 14, 2012 [3 favorites]
This thread is closed to new comments.
So on the one hand... there are lots of rules and regulations about medical care in prison. This is a good thing. I had a... good friend, let's say shorthand... who was in federal prison with a life-threatening illness for a decade and he thought for the most part that the care was very good. I gathered that he was very close with his doctors and caregivers, he thought they were well-informed, and that treatment was good. (He also survived the stint.)
On the other hand, it is certainly not always the case that medical facilities in prisons and jails are well-stocked and well-run.
In general, visitors are a very good thing; they let the prison know that people care and are watching. It's also not impossible that the facility will let you speak with the doctors. It might be tricky to arrange, but you should work for that, if you can.
Most importantly, however: there are also various forms of compassionate release, with different rules, I think, for different prison populations. He would have to file for that, and likely he should, in consultation with a lawyer. The criteria is that his circumstances have changed quite radically since sentencing. (Depending, again, on what system he's in, there is also the matter of parole and time served, etc.) Legal services for people with HIV are probably most familiar with these laws in practice.
posted by RJ Reynolds at 6:25 AM on January 13, 2012 [1 favorite]