Did she play volley ball under my arm?

I think my surgeon played volley ball under my left arm. It is sore, sore from the node biopsy. I have 11 days until the big surgery. I'm terribly frightened and in mourning a bit.

I guess we're going to put our old cat, Ollie, down on Friday.  He's 20-1/2 years old. We stole him from under a hippie school bus in July of 1990. He's been such a good guy and was sick only once. His kidneys are failing. He eats and drinks voraciously and then dumps, usually five to ten times a day. We have the Boulder Daily Camera lining the floor in several rooms. He seems to be quite agitated and last night, had a very difficult time urinating. He still uses the box for that. We've scheduled it twice before and then backed out. He still eats, drinks, sits on Dick's lap, and purrs.

Dick is afraid to have the cat dumpings throughout the house when I have my surgery. We take great care to be careful about hygiene, but I know the floors are contaminated. Is it time?

The sentinel node biopsy is good.

I had a sentinel node biopsy yesterday, just to make sure the breast cancer hasn't spread. My surgeon took four six nodes and they were all negative for malignancy.

A sentinel node biopsy is a strange surgery. First, a radiologist injects a radioactive tracer near where the two malignant biopsies were found. There are titanium clips marking the spots  Then I sat around looking dumb for 2.5 hours. To begin surgery, the surgeon used a Geiger counter to mark the location of the first (sentinel) node. After making the cut, she then injected a blue dye and watched the nodes to see where the blue dye first drains.  The node(s) that picks up the dye is removed. I don't think she removed enough to cause lymphedema.

I'm doing pretty well today with just some fatigue and a very sore underarm. Yesterday, my face was blue.  Today, my blue face is pretty much gone but my pee is still blue. I'm not looking forward to January 10. In fact, I'm down right frightened.

AMAS test

I had an AMAS (Anti-Malignin Antibody in Serum) test last week.  It is a test that can detect cancer somewhere in the body up to 19 months before standard medical tests. I got the results yesterday. I am "normal."  That means that the test is not picking up cancer anywhere in my bloodstream.  That is in line with the thinking that my two biopsied cancers have not spread beyond the ducts. http://www.oncolabinc.com/ 

Sometimes, ductal carcinoma in situ never goes anywhere and sometimes (>50% of the time), it becomes invasive. 90% of invasive breast cancers are called "infiltrating ductal carcinoma" which means that they have broken out of a duct and grown their own blood supplies. The problem is there is no way to determine which cancers will become invasive and which will stay put. Because of that, and because I've had two positive biopsies, there is no choice but to treat my cancer aggressively. 

I'm having a bilateral mastectomy on January 10, 2011. Next Monday, December 20, 2010, for my birthday, I'm getting a sentinel node biopsy just to make sure there has been no migration to the lymph nodes. It is day surgery but requires general anesthesia.

Just say No to Obamacare.

Dirty doctors are as bad as dirty politicians

This is what the executioners were responding to in my last post. The Infectious Disease Society of American got caught red-handed by the Connecticut Attorney General. He found that IDSA had fudged on its guidelines for treating Lyme disease. In fact, he found several conflicts of interest including that some of the panelists consult for insurance companies against patient appeals, and that some act as "expert witnesses" when they can attempt to get a doctor's license revoked. They have successfully destroyed several brilliant Lyme-literate physicians.

The executioners of IDSA don't give a damn about how ill some Lyme disease victims are nor do they give a damn about research that shows Lyme treatment is effective, even many years after the initial tick bite.

Dirty politicians will win by destroying the opponent, but I didn't expect "healers" to be just as dirty.

J Med Ethics. 2009 May;35(5):283-8.

Attorney General forces Infectious Diseases Society of America to redo Lyme guidelines due to flawed development process.

Johnson L, Stricker RB.

California Lyme Disease Association, Ukiah, California, USA.

Abstract

Lyme disease is one of the most controversial illnesses in the history of medicine. In 2006 the Connecticut Attorney General launched an antitrust investigation into the Lyme guidelines development process of the Infectious Diseases Society of America (IDSA). In a recent settlement with IDSA, the Attorney General noted important commercial conflicts of interest and suppression of scientific evidence that had tainted the guidelines process. This paper explores two broad ethical themes that influenced the IDSA investigation. The first is the growing problem of conflicts of interest among guidelines developers, and the second is the increasing centralisation of medical decisions by insurance companies, which use treatment guidelines as a means of controlling the practices of individual doctors and denying treatment for patients. The implications of the first-ever antitrust investigation of medical guidelines and the proposed model to remediate the tainted IDSA guidelines process are also discussed.

PMID: 19407031 [PubMed - indexed for MEDLINE]

 
Just say No to Obamacare.

Evidence based? Give me a break!

I'll write more about this later. There is a special place in hell reserved for these people.  They have, with no evidence, sentenced many to death.  Here's one who didn't have to die:  http://www.youtube.com/watch?v=NVsfGvZt-LA

__________________________________________

J Med Ethics. 2010 Nov 21. [Epub ahead of print]

Scientific evidence and best patient care practices should guide the ethics of Lyme disease activism.

Auwaerter PG, Bakken JS, Dattwyler RJ, Dumler JS, Halperin JJ, McSweegan E, Nadelman RB, O'Connell S, Sood SK,Weinstein A, Wormser GP.

Division of Infectious Diseases, Department of Medicine, The Johns Hopkins Medical Institutions, Baltimore, Maryland, USA.

Abstract

Johnson and Stricker published an opinion piece in the Journal of Medical Ethics presenting their perspective on the 2008 agreement between the Infectious Diseases Society of America (IDSA) and the Connecticut Attorney General with regard to the 2006 IDSA treatment guideline for Lyme disease. Their writings indicate that these authors hold unconventional views of a relatively common tick-transmitted bacterial infection caused by the spirochete Borrelia burgdorferi. Therefore, it should come as no surprise that their opinions would clash with the IDSA's evidence-based guidelines for the diagnosis and treatment of Lyme disease. Their allegations of conflict of interest against the IDSA resemble those made against the National Institutes of Health, the Food and Drug Administration and the Centers for Disease Control and Prevention in 2000, which were found to be baseless. It is the responsibility of all physicians and medical scientists to stand up to antiscientific, baseless and unethical attacks on those who support an evidence-based approach to caring for patients.

Just say No to Obamacare.

Disgusted

I have had Lyme for 25 years, diagnosed as ankylosing spondelitis, hypothyroidism, hyperparathyroidism, hyperaldosteronism, crazy and so on.  Never could they explain how being crazy destroyed my knee cartilage and the nerves on the outside of my feet.

The first doctor I saw in June of 1985 said "Lyme" but never gave it a second thought. He preferred the ankylosing spondelitis diagnosis even though I did not have the genetic marker for it. The second one I saw when we moved to Minnesota said "Lyme" but the test was negative so she ignored it. I didn't go back to her again for fear she'd want me to go off the anti-inflammatories, my drug of choice for 14 years. Now we know that the Lyme screening test, ELISA, is inaccurate at least 50% of the time. 

Over the years, I muddled along, trying to raise my five children. I was sick. I traveled to many prominent medical centers, including Mayo Clinic. Nothing. The physicians at one of the centers actually treated me with kindness and respect. Too often, I've had doctors get really ugly with me when they had no idea what was wrong. A couple of them even fired me. Now that I have breast cancer, all the medical people are super nice to me. Where were you for the last 25 years?

I finally found an incredible physician healer in California who is treating me with oral and IV antibiotics. He has given me my life back. I can drive my car again, and walk through a store without breaking down in a sweat, shaking and having to be helped out.

A year ago, I was seriously disabled, writing final letters to my children, and trying to get my affairs in order. I couldn't drive and could barely have anyone around me. Sleep was fractured and terrible. Lyme is a lonely, isolated scream. Once Lyme has progressed beyond its initial stage, it is difficult to treat. Those medical personnel who say it is easy to treat have obviously never studied the behavior of spirochetes, actually treated anyone with late-stage Lyme, or they have financial interests that conflict with their practice of medicine. The Connecticut Attorney General found that the mainstream guideline-writing group suffered several of those conflict-if-interest problems.

Honestly, my little bump here with breast cancer (assuming it has not spread) is nothing compared to the horror I've experienced for the last 25 years.

Just say No to Obamacare.

Again, no to University of Colorado human trafficking

I just got a call from the University of Colorado. They sent a letter requesting more mammograms. I've already had enough to last several lifetimes. The problem is they sent the letter to an address where I haven't lived in three years. The current owner opened it.

I told them I would not be coming to their human herding activity and expressed my dissatisfaction with the surgeon's disinterest in any flap surgery, and the plastic surgeon's failure to show up for the consultation. The surgeon pretty much told me, "We'll just put expanders in and then implants later." Nope. I have no interest in having implants fixed every few years. I'd rather be flat.

Just say No to Obamacare.

More uninvited intrusion

To: Maria Franciosi, American Cancer Society

Today I received a packet of information from you under the letterhead of the American Cancer Society.

With all due respect, you and the American Cancer Society did not have my permission to access any of my medical information. In fact, you do not have a right to even know my name and address.

Please destroy everything about me that you have in your files. ACS does not have my permission to maintain a medical dossier on me. While I understand ACS is trying to be kind, I do not like the paternalistic and casual attitude with which my personal information is bandied about.

By the way, you do not have my permission to release anything about me to anyone else. 

Yours truly,
Valarie Murphy

Note: This is a good foreshadowing of the paternalism we can expect with Obamacare. For my own good, I have another quasi-government intrusion in my life.
 

I'm saying no to University of Colorado Hospital

I had my big team consultation today. It was supposed to be a conference with four specialists and me. I dropped all my films and records off over a week ago, and they were supposed to have been studied for this conference. I was to see a surgeon, an oncologist, a radiation oncologist and a plastic surgeon.  Instead, I was put in a little room and one by one, they (sort of) came by.

First I saw the oncologist and she was absolutely super. She was helpful and gave me good information that was identical to that of the first oncologist. Then I saw the surgeon. She was a very nice woman but I wouldn't want her to cut on me. She wasn't much interested in flap reconstruction, and rather dismissed me with, "we'll just put in spacers and implants for your reconstruction." Umm ... no, we won't.

The radiation oncologist was invisible but, oh well, who wants to see such a person anyway? The plastic surgeon never made an appearance so I'm supposed to make another appointment and take another two-hour trip back and forth. I think I'll pass on that. My time has value.

My experience is not unlike my experience there in 2005. At first the endocrinologist said she would dig until she got to the bottom of what was wrong with me. She was convinced I had Cushings. (It was Lyme disease.) When that didn't pan out, she lost interest. She didn't get to the bottom of anything except my "dislike" list. My brother went to them and was not helped at all. Cleveland Clinic finally tried to help him out but it was too late. Thirty years ago, my father was in University Hospital.  He had to make his way down the hall and find a pillow for himself. It appears nothing has changed.

So, I have my decisions made.  I'm having sentinel node surgery on December 20 at Rose, and a bilateral mastectomy with reconstruction on January 10 at Sky Ridge.  Now, I just have to ready myself for this bump in the road.


Just say No to Obamacare.