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Well,

We went up to Stanford on Monday and saw Dr. Lowe.  The same Dr Lowe we thought it might be. It was a fascinating process. He sat with Roberta and I for about 30 minutes just getting a full background and a detailed list of what meds she was taking and why. What was interesting was seeing his mind tick away at the different options and possibilities. You could almost see his eyes click when he tossed an idea away as not feasable.  I’ve seen this type of behavior before with someone diagnosing a difficult problem.

No new tests or plans yet. Dr Lowe is reviewing all of the previous tests first, and having some difficulties getting them freed up from one of the other docs. So, even though we don’t have any new answers yet we are pleased to be seeing a doc that really seems to know what he’s doing and has stated that Roberta will not be passed off again. The buck stops here. And when you’re the head of a research department at Stanford University, you probably know what you’re doing.

So, still waiting, but with hope we might get some answers soon.

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Well,

We are off to Stanford this morning to see if they have any answers for us. I’m trying not to get my hopes up too high. I’m pretty sure the most we will hear today is, you need another test, or we are waiting for the results of <blank>. But, I’m hoping.

Update later.

Because I work at a government facility, and because the government is always so efficient and flexible. I had to get a Comptia Security+ Certification and may need to get a Linux+ cert also. Even though I already have an A+ cert and am a Certified IBM AIX Specialist. (old certs, but still valid). They are just in the wrong check boxes.

So, last night I crammed and then today I drove up to Santa Clara, 80 miles. Took the 90 minute test in 20 minutes, and drove the 80 miles home. Not sure how, but of 100 questions it appears I got them all right. Statistically that’s surprising, but I’m not going to argue.

So, now I have that check box checked and one more Cert to put on my Resume. Now if I could only get those 4 hours of time back. Oh well.

We have some friends up in Fairbanks Alaska that are building a new house. It’ll be up on Murphy Dome and off of the power grid. Which means Solar, wind, and oil. So, how do you keep a place like that warm? Radiant floors, 6″ additions to all external walls, and you insulate like the devil.

Insulation

Insulation

The house is going up amazingly fast. You can see some of their progress at http://robknitsak.blogspot.com/

It’s going to be a pretty place. I can just picture sitting and drinking coffee in the mornings and watching the sun rise over the vast Alaskan landscape. It’s going to be wonderful.

Last Saturday I drove Megan and her friend Monica down to L.A. to spend a couple of weeks with Monica and her family. 700 mile round trip. We left here at 8:20 AM and I was back at home again a grueling 13 1/2 hours.

The phone rings on Friday and it’s Meg. “Dad, can you come get me this weekend? We’re bored.”

Saturday morning I get back in the truck. Drive past 1 overturned car, 1 burning Semi truck, multiple near misses on the LA freeways, 113 degree temperatures outside of Bakersfield, and 12 1/2 hours later I pull back into the driveway with a kid.

2 trips from Monterey to L.A. in a week.

Sheesh.

(-:

A very polite Anna of the Stanford Medical Centers Gastroenterology clinic called Roberta this morning to inform her that she now had an appointment with the head of the department, Dr. Lowe, on Monday the 27th of July and that if anything opened up before then she would call right away.

I believe the appointment is with Dr. Ansen Lowe. He not only runs a department but has his own research laboratory at Stanford. The Lowe Lab.

Dr. Ansen Lowe

Professional Education

  • Fellowship: UCSF Medical Center CA (1989)
  • Fellowship: Columbia University School of Public Health NY (1984)
  • Board Certification: Internal Medicine, American Board of Internal Medicine (1983)
  • Residency: Presbyterian Hospital NY (1983)
  • Internship: Presbyterian Hospital NY (1981)
  • Medical Education: Mt. Sinai School of Medicine NY (1980)
  • MD, Mt. Sinai Sch. of Med. Medicine (1980)
  • BA, UC Berkeley Physiology (1976)

Research Interests

My laboratory is focused on the biology of the pancreas and esophagus and their associated diseases. Using animal models and materials from human subjects, we have used DNA microarrays to characterize the gene expression profile of acute pancreatitis, pancreatic cancer, and esophageal cancer. The resultant data has led to a focus on the development of diagnostic assays and the identification of novel genes that participate in disease pathogenesis. We currently utilize a variety of cellular and molecular approaches in cell lines and animal models to explore the role of specific genes in disease.

The gene, AGR2, is currently a major focus of the laboratory. AGR2 is highly expressed in many adenocarcinomas, including those derived from the esophagus, pancreas, breast, prostate, and lung. We recently established that AGR2 promotes tumor growth. Current efforts are focused on determining AGR2’s mechanism of action in normal tissues and cancers, which we believe will lead to opportunities for the development of new therapies.

The Community Hospital Of the Monterey Penninsula gets 5 stars for todays work.

Today Roberta needed to go in and get a bone marrow biopsy. And no it didn’t hurt as bad as you think, it was worse. Ugh.

So, we go into CHOMP and get directions to their Comprehensive Cancer Center where the biopsy will be done. We go down and meet with the nurses and they are friendly, helpful, professional, and seem really competent. The tech level of this hospital is off the charts with rolling computers, monitors, communications, etc.

After all the crap with Stanford this morning all I want is someone to piss me off so I can go off. Instead it was the complete opposite. The nurse that took the initial blood did it without any issues at all. Quick, clean, and nearly painless. Was laughing and joking with Roberta to calm her. The main nurse came in and explained the 30 minute wait till the blood tests were done and told us about the Pathologist that would be doing the biopsy. Asked if Roberta wanted anything to drink, eat, etc. Was she comfortable, could she answer any questions. What was the history of her symptoms, what tests had she had done, etc. Showed genuine concern that it’s been 8 months of tests, almost 70 pounds of weight loss, and still no answers.

Half hour later the Pathologist comes in. Dr Szmit, talks with us, explains what’s going to happen, asks what tests and history of symptoms. Ponders that for a bit and talks to us about what it might and might not be. Tells us what the test is designed to look for and what each means overall and what is very unlikely with her symptoms etc. Very bright fellow and friendly.

He does the biopsy, details left out, just picture painful as hell.

Roberta has a reaction to the litocain and breaks out in hives and mouth and lips go numb. They give her Benadryl and monitor her closely for an hour or so just to be safe. Checking on her, chatting, and basically doing all they can to make her feel better.

Dr Szmit comes in a final time to check on her and says he will be contacting Roberta’s Oncologist via her cell phone (she’s off today) and let her know about Stanford and that he would also be calling her GP to inform him of the situation also and that something needs to be done. Whether that’s telling Stanford to go away and do something else, or do as much diagnostics and testing as possible locally until the appointment in 5 weeks.

Why can’t most medical facilites be this good?

I contacted the Stanford Medical Center today and spoke with Joy of the general reception area. She was friendly enough but unhelpful, other than to tell me that all the appointments for Dr. Chen had been cancelled that day due to the doctor being “unavailable”. When I asked about getting an appointment sooner than 5 weeks out or seeing another doctor she told me I needed to speak with the receptionist of the Internal Medicine group and transferred me over.

Upon reaching the receptionist at the Internal Medicine/Medical Specialties Clinic, a woman  by the name of Anna, who gives a whole new meaning to useless, bureaucratic, pencil pusher. She was absolutely NO help whatsoever. When I asked why the appointment was canceled and moved she told me the doctor would be unavailable that day and the next available was on the 20th of August. When pushed on making an appointment earlier she told me if I didn’t like it the next earliest appointment would be the end of September.

When I asked to get an appointment with another doctor she told me that I couldn’t do that and that if I wanted anything changed I would have to speak with Roberta’s local referring doctor and have them contact the clinic and see if anything could be done. When pressed on this she got very testy and things went no where. They just got worse.

My friend John sent me a link to the Medical Board of California and they have a great complaint form with one section describing “Substandard Care (e.g., Misdiagnosis, Negligent Treatment, Delay in Treatment, etc.)”

Guess who’s getting an official complaint filed against them for Substandard Care? Here’s a big FU Anna! Ya wanna be a bureaucratic B%$#! I work for the government. Let’s dance.

This is the first step in a nice long “I’m Pissed now and you’re gonna pay waltz”.

The offices of Dr. Chen at the

Stanford Hospital & Clinics

Internal Medicine/Medical Specialties Clinic

300 Pasteur Drive- Boswell Building

Stanford, CA 949305

(650) 723-6961

Called today to inform Roberta that after 6 weeks of waiting, her appointment with Dr Chen was canceled and that she would now have to wait another 4 weeks for an appointment. That’s 10 weeks of waiting to find out why she is so sick and in such pain. Whether or not the tentative diagnosis of Cancer was correct and whether it had spread yet. I’m sure that waiting 10 weeks to see if the cancer had spread makes it a pretty sure thing.

The reason they gave for the cancellation, which they did via a voice mail, so mighty nice of them. Was that since Roberta was getting a Bone marrow biopsy and they would wait at least 30 days to make sure the result had come back. Ignoring the $50,000 worth of other tests that have been done so far. When Roberta got the message and called back, crying, to say it wasn’t okay to cancel the appointment she was told that they already had given the appointment time to someone else and she would have to wait no matter what. It was already a done deal.

I’ll be calling my employer, my insurance company, and any patient advocacy group I can find to try and make life as painful as I can for these pencil pushing bureaucrats as possible. If it turns out that their delay has even the slightest chance of having caused this cancer to metastasize I will do everything in my power to sue them into non existence.

This has been moved into the criminally negligent phase. If anyone knows who I can call to file an official complaint with every agency possible I would appreciate the information. I’ll start with my employer SAIC, my insurance company AETNA, and start searches for patient advocacy groups, and government oversight agencies, and with the Stanford Medical Center.

I was sick to my stomache earlier because of the futility and sense of helplessness. I’m slowly watching my wife fade away in pain and anguish and then we have the medical system pull this. I have decided to NOT be helpless. I will NOT accept this. I WILL do everything I can to make life miserable for every uncaring pencil pushing, insurance gouging, slimy bureacratically run medical institution as possible.

One of my coworkers came in earlier and made a comment about his daughter playing over at the Sunset Center this weekend and wanted to give me a heads up because he knows I like classical music. When I asked what was up he gave me a funny look and said it’s part of the Carmel Bach Festival. WHAT!?!?! When did it start??? Well, it starts on the 17th and runs through Aug 1st. I completely missed it coming up.

The Carmel Bach Festival is a week long classical music get together for some pretty big name composers, teachers, players, etc. With concerts, master classes, talks, etc all week.

It’s going to be a good time had by all (classical nerds that is.)

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