It's funny how, if you wait long enough, the idiots will hang themselves. I have not provided an update on Pam and her lupus in a long time, not since Lahey. There has been sooooo much more since then. Funny thing about Lahey though... you might call it ironic. There was a social worker who came in during Pam's stay at Lahey (there was only one stay there). Her name was Laney, and when I saw it I remembered babysitting a little girl in Gulf Breeze, FL with the same name and same spelling. I discounted it as pure coincidence. The last name was different and surely this was not the same little girl as a grown woman. Then one day I was looking through Facebook and looked up Laney. Come to find out she relocated up here and was affiliated with Lahey Clinic. I came across the little girl I had babysat as a child during Pam's Lahey ordeal!! Too ironic! Anyway, like I said that was long ago. Let me try to bring things up to date.

Well, Pam kept going to her old rheumatologist back in Brockton. One day he had the audacity to suggest to her that if "I" had not stopped her from getting Rituxan, her lupus would have been cured by then!!! Ummm, wait!!! Urrrrr!!!! Screeccchhhh!!! There was so much wrong with that statement. First off, I was not the reason Pam did not go through with the clinical trial of Rituxan. She had gone to Massarotti, as you may recall from the prior story, and Massarotti said she was doing too good to be part of the clinical trial. Massarotti actually suggested Pam cutting back on her prednisone thereby causing a relapse which would then qualify her for the clinical trial. Pam decided on her own not to go that route. By the way, isn't that highly unethical of the doctor to suggest? (I asked that before, I know.) The second issue was, Pam forwarded me an article the week after the rheumatologist told her this - the article was from the lupus foundation and it said that Rituxan had failed the clinical trials for lupus treatment. http://lupus.about.com/b/2008/04/30/rituxan-fails-as-lupus-treatment.htm Too bad he did not know when he was telling Pam she would have been cured if she had undergone the Rituxan treatment that it was going to be announced the following week that it FAILED in the clinical trials!!! So where does he get off telling MY daughter that she would be cured of her lupus if it were not for me stopping her from going through the Rituxan treatments? My daughter makes her own informed decisions... I just made sure she was informed.

By the way, one of the risks associated with Rituxan is PML, progressive multifocal leukoencephalopathy. The symptoms appear closely to mimic those of a stroke... and after Pam's first stay at Newton-Wellesley Hospital, she had something happen that closely resembled a stroke. My aunt had a stroke and I knew how a stroke affected a person. You could hardly claim that Pam had PML occur as a result of being treated with Rituxan since she ostensibly had not agreed to or undergone Rituxan treatments. But Pam was obsessed with licking the roof of her mouth and she was slurring, as well as some other symptoms I will not embarrass her by listing here. It's a good thing Rituxan is sooo safe!!! The great thing for them is, if she were treated with Rituxan, she did not have to be listed with the results for her stroke like event. Tear up the paperwork and pretend it never happened. Instead Pam got on a train and headed to my sister's in New Jersey and came back all cured from her stroke-like symptoms. Ironically enough, my brother inlaw was a paramedic and my sister is now going to school to be a nurse. But there is no record of her having a hospital stay anywhere for whatever happened the days after she was released from Newton-Wellesley Hospital.

Anyway, while the Brockton doctor was blaming me for convincing Pam she would be cured had she gone through with the Rituxan, he also told her that she needed to be followed closer to home and pushed her into using Dr. Don L. Goldenberg out of the Newton-Wellesley Hospital. As his story went, Goldenberg was a "world-renowned specialist in Lupus". Ummm, yeah!

I first met Goldenberg during one of Pam's Newton-Wellesley stays. Have you ever met someone who made the hairs on the back of your neck stand up? This guy gave me the creeps more than any one person has EVER given me the creeps. Every time I have ever ignored the feeling when I instinctively disliked someone, I later discovered I had been right in my instinct. Well, if that was the case this time then Pam and I were in for trouble. Oddly enough Pam took an instant disliking to him as well, but she was not old enough to realize she should trust her instincts, especially when her trusted rheumatologist is recommending this yahoo as a "world renowned specialist" on lupus.

The very first time I met Goldenberg, and every subsequent time as well, I told him the same thing I told every doctor she saw... that every single time she went into the hospital it was preceded by a horrible vomiting phase. I kept saying if we could get the vomiting under control she would not end up in the hospital. He did not say anything. I said it to him again later and he said, 'oh yeah, I remember you saying that before'. Well finally I saw him in the hospital with Pam yet again and I mentioned it and he said, "That is a symptom of lupus". Ummmmm, EXCUSE ME???? Too bad I did not come up with the obvious question then, but I have asked it repeatedly since then and have received no answer: If this is a symptom of lupus and we were coming to you to tell you she is vomiting profusely, why did you not do anything? Why did you wait for her "lupus" to flare so bad that she had to be admitted to the hospital?

The guy would have to be either an idiot or a moron... you decide. Either her lupus was under control or it wasn't. If it is NOT under control, you do something to get it under control... like increase Prednisone dosage to stop the vomiting and prevent another hospital stay not to mention untold misery. When I described Pam's vomiting bouts, I put it like this: I had morning, noon and nighttime sickness when I was pregnant. I had it BAD!! And Pam was vomiting like I had! Does that sound like a symptom to just ignore until they end up in the hospital? There are drugs that help women with morning sickness as well as nausea from chemo... couldn't they have TRIED to do something for Pam?

Well, just to be fair to Goldenberg, since he was not there to defend himself, I asked his partner, another rheumatologist covering for him, why he did not do anything to alleviate Pam's vomiting if this was a symptom of the lupus... like increase her prednisone. The partner could not list a single possible reason why he did not do anything. I feel certain he has some cockamamie excuse he gives now, but I have not heard it. There is no good reason to allow a person to continue vomiting every single thing they eat until it gets so bad they end up in the hospital...well, not unless a hospital stay was the goal all along.

Yeah, Goldenberg's latest solution for Pam's lupus was Cytoxan. If you cannot get her body to stop responding to unseen triggers, let's just eradicate her immune system so that it does not respond to anything. I said Rituxan was the chemo that keeps giving? Well, Cytoxan is literally a form of chemo that would have to be re-administered when her immune system finally healed itself. It truly is the chemo that keeps giving and giving and giving, unlike cancer where you undergo it once, MAYBE twice.

Oh and let's not forget another of the players in this whole thing: Dr Michael Lew. He is an infectious disease doctor at Newton-Wellesley. He came because Pam had contracted MRSA after a stay at Morton Hospital out of Taunton, MA. He claimed to vaguely know of Goldenberg and said that his reputation was great... as if daring me to counter his claims that Goldenberg was good lest Pam would be kept in the hospital and in isolation or whatever you call it. After all, he was trusting GOLDENBERG'S word that the MRSA was nothing to be concerned about. Well, the funny thing is, I later discovered Lew's office was and is directly across the hall from Goldenberg's, and yet he acted like he did not know him. Yeah, I bet!

By the way, what is the deal with nighttime forays during Pam’s various hospital stays? During Pam’s previous stay at Morton Hospital, she was sound asleep and they woke her up at 1:30 AM to give her a shower!!! The nurses said that was a good time because it was not busy. When I said something to her evening nurse about it, she did not even know the two nurses who had woke Pam up for a shower at 1:30 am yet their shifts would have overlapped by half an hour. This nurse I was asking had been there for years. Hmmmm.... weirdness. I had not spent the night but after that I started spending the night to make sure they did not do stupid crap like that again.

This last time Pam was at Newton-Wellesley I thought it was safe to go home and sleep. It was weird because they brought me a bed and were way more prepared for me to stay than they had ever been in all of Pam's hospital stays. But she had just gotten settled in her room at 11 pm and everything should have been peaceful. Well they LOST her xrays and needed another set at 1:30 am... then they left her gurney in the hall TWICE and forgot about her. When she got back to her room she called me sobbing from the whole experience. She had been left freezing with nothing but a thin sheet to cover her and no call button within reach in the middle of a deserted hallway. I did not leave her alone in the hospital again overnight after that. It seems like I am needed to be her pit bull watching over her during her stays. What is it these people are doing at 1:30 am anyway???

The message I would convey to you? Don't necessarily go to world-renowned doctors for your ailment. You never know how they got to be world renowned. Besides, you may end up the next poster child for whatever disease they specialize in. And you may ultimately end up being a guinea pig for things nobody should ever be used as a guinea pig for.