Notes from the Cafe Fiasco

Ultrasound - Round 3

Dear Mr. Spriggs,

Thank you for taking the time to inform us of the negative experience you encountered at Harvard University Health Services Radiology Clinic. I apologize for the lack of customer service afforded you during this visit.

If I have your permission to do so I would like to forward this complaint on to the Manager of the Radiology Service for review and follow up of our practices/policies and actions.

Our goal is to provide quality care and improve patient satisfaction. We value feedback from our patients whether positive or negative as an incentive to continously improve the medical services we provide to our
members of the Harvard Community.

Sincerely,
Linda C. Cannon
Patient Advocate

_________________________________________

Dear Ms. Cannon,

Please be my guest in forwarding my account to whoever you think it might matter to.

Just for the record, my objection is not that I wasn't treated adequately as a "customer" but rather I wasn't treated with the fundamental respect that "someone who is entrusted to your care" should be. The fact that I was treated more as a part of an economic transaction rather than someone with needs and feelings was the root of the problem.

Thank you.

Marshall T. Spriggs

Ultrasound - Round 2

The response to my email from Dr. Perlo (my Primary Care Physician) was quick and to the point - contact the Patient Advocate at University Health Services and you'll be contacted about scheduling an MRI.  So, I sent this off to the Patient Advocate: 

Dear Ms. Cannon,

I had the experience recounted below at UHS yesterday and Dr. Donald Perlo, my Primary Care Physician, suggested that you might be the person to relate it to.

From my minimal interaction, I would say that UHS has three problems related to health care management that should probably be addressed:

1) The tech that I talked to obviously did not feel comfortable taking direction from me about looking at the second spot on my chest even though I told her that this had been approved by my primary care physician in communication with me and the procedure itself is about as non-invasive as western medicine gets.

I got the impression that the issue was not that she did not believe me when I told her that Dr. Perlo has approved the extension of the procedure, but that she felt constrained by what was on the paper. This would tend to indicate to me that empowerment of either patients or frontline providers is not a concept strongly held within the University Health Services.

2) The radiologist obviously felt that she/he could change the orders of my primary care physician IN THE MIDDLE OF A PROCEDURE without consulting either him or myself - this without ever having seen me or looked at my medical records. Is this the cavalier manner that medicine is currently practiced at UHS?

3) I left the encounter knowing that someone (I still didn't know who) had determined that I needed an MRI, but I was not given any direction as to how I might get one besides being told that "Shields does this."  I knew that.  I'd seen the commercials and had actually had one rather recently, but that doesn't mean that anyone gave me direction as to what came next for me.

All in all, shoddy work and not a pleasant experience. If you would, please see that this does not happen to me or anyone else availing themselves of your services again.

Thank you.

Best regards,

Marshall T. Spriggs

Ultrasound

Dr. Perlo,

I went for the ultrasound that you and I had spoken of this morning and the results were not satisfactory.

I was greeted by the ultrasound tech who, in a very upbeat way, told me that this might not be the correct test to see if anything was wrong. I told her that I had prostate cancer and I was interested in any info that I might get. With that she had me take off my shirt and lie down and I told her that there was another instance of a small mass under my right arm and that you and I had talked about having that looked at too.

She looked at my back, didn't really find anything except a fat deposit, and then told me that the ultrasound would look differently if it was a cancer tumor. Then she said that she couldn't really tell if anything was wrong.

After doing this, I asked about the right and she said that this was not on the authorization sheet and that she had to go talk to the radiologist. After a couple of minutes, she came back into the room saying that the radiologist said that what I needed was an MRI, not an ultrasound. The radiologist (who seems not to have a name) did not deign to tell me these things his or herself, but sent the tech to deliver the news.

This was the end of the appointment, even though checking my right side (which I told the tech was much better defined) would have taken approximately 2 minutes.  Knowing better than to kill the messenger, I put on my shirt and I left.

The attitude here seems to be that I as a patient was a) stupid (as in I didn't know my own body) and/or b) wasting Harvard University's precious resources by pressing an investigation of a diffuse and hard to define condition. Or maybe it's you who are stupid and wasting the University's resources. Either way, I still have these two spots on my ribs that are sore to the touch and I know nothing more than I did before even after taking the time and effort to go through two appointments with University Health Services. This does not make me happy.

Dr Perlo, if you look through my medical records you will see that over the years I have not been a chronic complainer. In fact, the last time that I saw Dr. Poaster she noted that she only saw me once a year for my annual physical over the eight years that she was my primary care physician and she found this strange. The fact is, as someone who had an unhealthy childhood, I don't like doctors much and, given my druthers, I tend stay away from them. And as someone who has been doing martial arts for almost 40 years, I also know my body pretty well and if something seems like it may be wrong, it may actually be wrong.

As for wasting University resources, I would bet my considerable health insurance premium that given my interaction with UHS you folks have actually made money off of me over the past 10 years, even with the prostate cancer.

People in the medical profession talk a good game about prevention these days, but it seems that if someone shows up with something that doesn't scream "I'm deathly ill" then we don't seem to be worthy of time and attention of the system.  So I guess that the definition of prevention means all those things that I'm supposed to do so that I don't bother the nice people in the medical system and not getting help from you folks catching things early. Not my definition, but then it is obviously not my system.

So, what do we do now?  As my primary care physician, you are my gate and advocate in the system. Got any suggestions?

MTS

Thanksgiving 2007

Still here.

Thanks.

MTS

MLTD - 11/18 - Energy

Whenever anyone asks about what I am doing for me cancer, I tell them that what I'm doing can be divided into diet, supplements, and Chi Kung. Things are fine until I get to the Chi Kung part. Most people get a puzzled look on their faces and some even ask what that "Chi Kung" part is.

Actually, Chi Kung in Chinese means "Energy Work" and I've been doing something related to my body's energy field for a long time now. The softer parts of Aikido have to do with reaching out and manipulating the opponent's center which exists both physically, in terms of a center of gravity, and energetically, in terms of where movement comes from and extends to. So, in it's subtler form, Aikido is a form of Chi Kung.

I've been doing acupuncture for the past three years to work on my allergies, but I'm sure that the same energetic deficiencies have had a hand in the development of the cancer. I do Reiki on myself on and off (since I am a certified Level Two practitioner) and that's like Chi work, but on a different frequency. And then, on and off for the past three years, I've been doing Tai Chi which deals directly with energetic issues as it is one of the three main Chinese "internal" martial arts.

New on the scene since the diagnosis is Yi Chuan - a specific type of Chi Kung that seeks to increase the body's ability to hold the Chi energy and, as of last night for the first time, Quantum Touch which is an energetic attunement with a practicioner (in this case, my friend Pam).

Now that I've got the diet (more or less) and the supplement regimens down (which took three months) my cancer work has been more and more dealing with the energy work. But, it seems that I can overdo.

Friday morning we did about 2 1/2 hours of Yi Chuan exercises in class and then I had a Quantum Touch treatment from Pam last night. Then this morning was one of the twice weekly Tai Chi classes. By the time that I got back home after class there was nothing more that I wanted to do than to take a nap which I then proceeded to do for two hours, even though I had a good nine hours of sleep last night.

With a lot of this stuff, were you to look at it from the outside, you would say that not much was happening. Watching someone standing for 25 minutes with their eyes closed trying to let go of any blockages in the body and mind is not exciting. But from the inside, there's a lot going on - much of it as repetitive, as with my issue with the muscles of my left shoulder blade that keep tightening up so that I have to keep consciously letting them go. Again and again and again.

So, what am I doing for my cancer? Not much. But it seems to be kicking the hell out of me.

Eastern Standard Time

Got through the time change okay. It's fall, so I got an extra hour of sleep before heading off to Tai Chi class on Sunday morning. I adjusted all the clocks during the day.

The problem is that the cat has woken me up for his breakfast for the last two days at 5 am. Anyone have any idea of how I reset the cat?

Books I Won't Write - A Series

I keep a list of great titles for books that I will never write due to lack of time or total lack of disipline (both lacks I have in abundance). Feel free to steal these ideas if you'd like to take a whack at it.

Today's Title:

Ruth Bader Ginsberg is a Total Crack Whore and Other Things that Ann Coulter Hasn't Said in Order to Sell Books ... Yet.

MLTD - 11/2 - Thanks

In the past 36 hours there have been over 130 hits to this blog and a large number of emails from people who I consider my friends and family. People like you.

Thank you.

Serious illness is a very isolating thing (even if you don't take it seriously like I do) and all the congratulations and good vibes make it a great deal easier to get up the energy to continue the fight. I don't know how people do it who aren't as fortunate as I am.

Forward.