Quitting Medical Care

I sent this message off to Palo Alto Medical Foundation Customer Service today, after not being able to get through their phone system to talk to a human being. 


I hope they will respond, at least acknowledge there is a problem. 


I don't want reassurances that their phone programming is "in process" of getting straightened out. 


I just want to know WHEN!

To:
Customer Service
From:
Elizabeth M Munroz
Sent:
01/26/2012 4:59 PM
Topic: Customer Service

I am so fed up with your phone system! I just spent an hour on the phone just to have one question answered. An important question related to bloodwork ordered by my oncologist. It was very stressful to Hold and listen to music and then get connected only to hold and listen to music then be transferred to another department where I then hold and listen to music

And all along being told that my phone call is important!

Not to mention that when I finally talk to a person and they find it necessary to put me on hold for something I have gotten disconnected three times today. At least one person did call me back.

By the time I get to talk to the right person to ask my question and get my answer I am so frustrated and angry that it is hard for me to be civil. As it stands I decided to not bother to go through with my specialty blood test.

I am so ready to quit being a patient at PAMF that I am now looking around for other doctors to take over my medical care. Unfortunately I need a whole team of doctors for my multiple diagnoses.

I am so sad and disturbed by all this business! I feel like PAMF could care less!

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Note to Dear Reader: Picture is my own digital art redefined from a photo of an average view. It's called, Lost in Abyss.

How to live with Stings, Barbs and Quills

Don't be left out in the cold!

It was the coldest winter ever. Many animals died because of the cold.

The porcupines, realizing the situation, decided to group together to keep warm. This way they could cover and protect themselves.

But the quills of each one jabbed and wounded their closest companions.

After awhile, they decided to distance themselves one from the other and they began to die, alone and frozen.

So they had to make a choice: either accept the quills of their companions or disappear from the Earth.

Wisely, they decided to go back to being together.

They learned to live with the little wounds caused by the close relationship with their companions in order to receive the warmth that came from the others. This way they were able to survive.

Author unknown


Photo by Pat Kavanaugh

Cancer Chances Increase in Previous Cancer Patients

I'm aware that getting a secondary cancer is much more likely than the percentages for a person who has never had cancer. Sad but true. 

I think in some cases it is because of the treatment a person has had in the past. For example, in the chondrosarcoma group we have had a couple of breast cancer survivors who then got chondrosarcoma, which was caused in their case by the radiation they received. Same thing, too with two men who had previously had prostate cancer. As far as I know I am the only one who developed Leukemia as a secondary cancer to Chondrosarcoma. Neither cancer is related to the other. My chances increased just by having had the first cancer. I knew this from reading about it a long time ago and I was always wondering when that second shoe would drop.

But, because I had the previous cancer and survived, the curling up in a corner and being miserable doesn't happen. That only happens when I am sick with the flu. I learned a long time ago that life will pass me by if I don't live it. I can live it limping or even lying down if I am not doing well. But, for me, once I get moving, it helps. Though, with the leukemia, I find I tire out easier. So sometimes I just have to sit down and read a book or something for twenty minutes or so, then get back to what I was doing before. Frustrating, especially if I am trying to clean out a closet or something. 

 

Only 32 Like Me

Poking around the National Cancer Institute site today, I found a clever searchable chart. The one I am presently looking at breaks down by county, how many people have cancer. For example: My county has 1,119 average annual count (between 2004 and 2008) of cancer patients. The population of Santa Cruz county in July of 2008 was 253,137.

You can also tweek the chart to give a break down of the types of cancer. There are 162 annual count for breast cancer in females in my county, 199 for prostate cancer.

Here I am with a diagnosis of Leukemia. When I look at the chart for my county the average annual count for people with Leukemia is 32.

picture is symbolic

I can break the chart down further by chosing sex or race. I chose Asian and came up with "less than 3" for Leukemia. Over in  Santa Clara county the number is 34. Santa Clara county has a high Asian population so that is understandable.

I then chose males with Leukemia in Santa Cruz county. The number is 18. I know one of them. He was in my writing class last fall. He has been dealing with his Leukemia for the last seven years, so, he is definitely one of those 18.

The average annual count of Leukemia patients for the whole state is 3,998. When the count is for all types of cancers in the state, the number is 147,153.

The death rate for Leukemia in Santa Cruz county is falling. The average deaths per year from Leukemia is 14. That's a little less than fifty percent.

This is the link to this handy dandy chart system

Trusting Doctors

After the incorrect reading of my chest xray and my writing to my doctor asking the radiologist read it again and compare to an old CT scan, she wrote and apologized. Then I sent her the response below:

"I appreciate your taking a second look at my chest xray and comparing it to my previous CT.

I understand there is a big change going on with the system. That's scary to think about. What if there are other patients who have medical issues that are not being recognized?

I realize as a physician, it must be frustrating to work in a situation like this. I would find it nerve-wracking. I consider the clinic to be superior and I sure hope the system changes get completed soon, for the sake of the professionals who work there as well as patients.

I try not let my trust issues affect me with new doctors, but it does come back to challenge me often. The previous situations that affected me and make me wary of having full faith in my physicians were unfortunate. One was an orthopedic surgeon who removed a "benign" tumor from my pubis. When it grew back in six months, he told me it was scar tissue and not worry.

It continued to grow upward inside my pelvis for two and a half years. I saw another orthopedic surgeon who took an xray and said nothing was wrong and that the pain in my hip was essentially in my head. I was age 22 but had enough sense to recognize that a cauliflower shape on the xray in my pelvis did not belong there.

I went to see another orthopedic surgeon who knew exactly what he was seeing (chondrosarcoma) and sent me to an ortho oncologist. This resulted in an internal hemipelvectomy with seven recurrences over eleven years. I'm lucky to be alive and doing okay. People didn't have such a high survival rate in the 1960's.

That's why I take such an active role in my health care. I appreciate so much your understanding about my concerns and writing me."

Note to reader: That's why I think it's important to learn everything I possibly can about leukemia. Ah.... a new educational experience in the field of science. Am I up to it? I'm looking forward to learning all those new aspects of science and genetics. Hope I will understand!

Apology for Nipple Reading

This is what I love about how medicine is being practiced today, as compared to 50 years ago, when this never would have happened. I mean this communication never would have happened because I never would have been privy to the radiologist report. Today, as patients we can be more involved in our own care. But, we do need to be knowledgeable about our bodies and not be lazy by leaving it all up to the medical personnel. Just remember they are human beings, too.

My doctor forwarded on my message to the radiologist where I asked that my xray be reinterpreted and compared to a previous CT scan which shows a nodule in my lung, NOT a prominent nipple.

This is what the original reading said:


PA and lateral chest radiographs are provided.  Well-defined rounded opacity projecting over the right lower lung zone probably represents prominent nipple shadow.  This appears asymmetric compared with the left although, the patient is rotated in position.  


Repeat radiographs with nipple markers in place should be considered for confirmation.  


No focal consolidation or pleural effusion is seen.  Cardiomediastinal silhouette is within normal limits.  No acute bony abnormality is seen.


Mild multilevel thoracic spondylosis is noted.

My Garden Pathway ~ I didn't notice the bird when taking picture!

So, here is the response to my request for a second reading of the "nipple" xray. It was a personal message written to me by the radiologist:


I understand your frustration and I apologize for the error. Unfortunately we have a slight glitch in the PACS system since we have upgraded our system. Patients now have new medical record numbers so the prior studies are no longer loaded automatically. 


The technologist who performed your xray forgot to merge your file so, this was the only image available to me when I read the exam. And, there was no other history than "Cough". If I knew the history of chondrosarcoma, the read would have been very different (see my read on your prior CXR). Additionally, the nodule is not seen on the lateral view because you were slightly rotated. Anyhow, I addended the report after you notified me of the prior exams and I will make sure your file is merged appropriately. 


Again, I apologize and I feel horrible that your faith in physicians has been compromised. But, technical errors do occur in these upgrades and we are doing everything we can to try to avoid this situation in the future.


Now, one might say, oh that's not a good enough excuse. But, I disagree. I know the clinic has been going through computer upgrades to their system. This is no easy job because the clinic is associated with forty seven more clinics. This upgrade is BIG. I can understand how what the radiologist relates in her email to me.

What does bother me is that the tech is the one who "forgot" to merge my file. I remember how sullen and unfriendly she was. When I run into someone like that I give them the benefit of the doubt. I make an effort to make friendly small talk so hopefully it might make a difference in an otherwise not so great day. Of course, I cannot rescue the world, or make xray technicians smile, if that's not going to happen. Life is a two way street. I often find that when dealing with others, if I am kindly, polite and caring, others will behave similarly. So why not make the effort to help make someone else's day a little brighter?

Still, Ms. Xray Technician was sullen and mechanical in her dealings with me. Seemed like maybe she was just totally out of energy and patience. It was late in the day, after all. So I was happy to get out of there as soon as possible. Still I can't complain. She did, at least, let me see the xray when done, but that's the only thing I can give her.

I wrote a message back to the Radiologist who apologized. I will share that tomorrow.

When a Nipple is Not a Nipple it's a Nodule

When I discovered the error the radiologist made reading my chest xray, I did a slow burn. Too many times in the past, I have been misdiagnosed, over diagnosed, under diagnosed. You name it!

It's too complicated to go into all the medical error stories right now, but I think I will make a list sometime in the future and post it. This is not a tirade against doctors or medical care. Just a statement of what happens.

I often wonder what happens to other patients who have mistakes on their medical records if they are not the nosy, pushy kind of patient like me. I want corrections when there is a mistake and I will go to lengths to make sure the correction happens, even if I make a fool of myself, even if I am the one who is mistaken. Yes, that has happened too, where I was sure something had been overlooked and I pressed on about it only to learn it was my own error to believe that something was wrong in the first place.

Bless those medical people who have to deal with me. I'm not mean about it. Just "assertive". But, I'm sure their jobs are hard enough!

I have an online account that connects me to the clinic where I can email my doctors. Since the radiologist is not my personal physician, I sent a message to the doctor who had ordered the chest x-ray. This is what I wrote:


Please notify the radiologist, who read my chest xray that the "nipple" showing on my chest xray is not a nipple. Please ask her to compare the xray to the CAT scan of my lungs taken a couple months ago which showed the nodule inside my lung that has been noted before.

For heavens sake, this is why I have difficulty having faith in some doctors. How can I believe that the reading of my xray is accurate at all?

This is exactly what happened in the past when I had large chondrosarcoma tumor growing in my pelvis and it wasn't seen.

I would also like to see the corrected reading.

Thank you

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Note: I took the photo of the dewdrops on Jasmine in my own back yard shortly after a rain.

Coughing up a Lung?

I've been sick since Christmas time, presumably a cold or flu. It has hung on and hung on. Mostly it is the coughing that never lets up. This is the kind of coughing that is dry, doesn't produce the relief of mucus. It is the type of cough that squeezes the bronchi and it takes a great deal of concentration to not give into that squeezing.

Moving about or talking increases the frequency and intensity of the coughing.

I used every possible over the counter and complementary method I could think of to help get some control of the coughing and give my body some rest. Attempts were futile.

The cough was so intense my head throbbed and my rib cage objected to the constant wracking (hacking?). I could even feel sharp pain in my lower spine when my cough was repeating itself without respite. Yes, yes.. this is what coughing up a lung feels like!

Since I am mildly asthmatic, I am aware of when my breathing is compromised and it certainly was getting that way. Therefore I went to Urgent Care and received a nebulizer treatment. I have my own nebulizer at home but was out of the medicine to put in it. Also, I received a prescription for the medicine (albuterol) and another for Prednisone pills. They helped considerably. But, now the prednisone has run out and the coughing has returned full force.

Two days later I saw my oncologist who ordered a chest xray, just in case there was something going on. I went to have my xray. The technician seemed a bit sullen but I figured perhaps she had a bad day. When I asked to look at my xrays, she let me look at them. This seems to be pretty common these days, at least here in California. In years past I have often been refused that option or told I wouldn't know what I would see, or I was not qualified to look at my own xrays.

I'm not a radiologist. Though I took medical courses in the past with the goal of radiology I never finished my education. I cannot officially read an xray, but I have seen enough of my own that I can at least recognize when something appears to be different from the others that have previously been taken.

I was not surprised to notice a nodule in the lower lobe of my right lung. It has been there quite some time. (long story about that. I'll write about it some other time)

Therefore I was very annoyed to read the final report as read by the radiologist not noting a nodule in my lung, but identifying it as a "nipple".