Google Syndrome - Patient's Beware

With so much information at our fingertips these days with the internet, even a well educated and self empowered patient can get caught up in what I call "Google syndrome". Google syndrome can be summed up by this defnition "a well intentioned effort to educate one self regarding health problems, prognosis, symptoms and potential outcomes through the search engine Google to the point where everything you read you believe and take to heart as being the truth because you found the information through Google".

Okay, I made up that definition and the term Google syndrome, but I think it illustrates a point I am trying to make. Not everything you read in the press, magazines, or even on the internet can be taken as being the God's honest truth about anything. That is why many organizations such as the Oklahoma Brain Tumor Foundation, American Cancer Society and other health advocacy organizations will typically provide you a list of suggested websites you can visit to find good, reliable information regarding your health.

Please don't listen to just any Tom, Dick or Harry regarding your health. Be selective and use only credible sites that are known to provide reliable and accurate information. There are many good sites avialable for you to use and there are many sites that aren't. You must be selective in what you allow yourself to read and who you allow to influence your health care decisions.

Lesson 3: Go with your Gut!

We all have that small still inner voice that speaks to us when things are wrong. We hear it and feel it but we don't always listen to it. Sometimes we put it off as we are imagining things, worrying or being a hypochondriac. The fact is that voice is our body and spirits way of warning us and all we have to do is listen. You can call it mothers intuition or whatever you want but we have all experienced it at one time or another and didn't listen to it and thought later "I should have gone with my gut feeling".

When my son Cade was diagnosed with a brain tumor he was only 12 weeks old, fortunately we had 9 good months with Cade before the tumor began to spread. It was right before Cade's first birthday and his tumor had been stable for 9 months. We had the monthly MRI performed. I always required the doctor to show me the MRI scans and explain them to me. So I had seen the previous scans and knew very well what the tumor had looked like to this point. The MRI report said that the tumor was still stable and had not changed. But when you looked at the tumor on the MRI film it looked different than it had previously. Previous MRI's the tumor had been kinda fuzzy around the edges and an oblong shape. But this time the tumor was clearly defined around the edges and perfectly round. It looked like someone had inserted a green pea into his brain it was so perfectly round and defined. I questioned the doctor about the difference in appearance and how could he say the tumor had not changed when clearly it had changed. The answer I received was the size of the tumor had not changed it had not gotten any larger. I still questioned the doctor and we went back and forth for 2 weeks until finally they convinced me that nothing was wrong and not to worry. Two weeks later my son Cade began having some symptoms and another MRI was performed but this time the tumor had tripled in size and spread down his spine.

Now my gut/spirit had told me that something was not right with that scan. I am not a radiologist or a doctor but I knew something was wrong. And had I listened to my gut and required the doctors to explore this further with different and more advanced diagnostic testing maybe we could have identified the changes in cell structure within the tumor and maybe we could have prevented it from spreading. MAYBE, MAYBE, MAYBE, who knows?

The lesson I learned from this was to always listen to my gut instincts, my spirit person, my mother's intuition. Who knows your child better than you? Who knows your body better than you? Who knows your husband or wife better than you? The answer is no one knows you better than you, and that is something years of medical training and experience cannot give your doctor.

Lesson 2: Communicate Better with Your Doctor

At the Oklahoma Brain Tumor Foundation I spend quite a bit of time with our patients and caregivers addressing problems they have talking with their doctors. Especially when dealing with a brain tumor you have vocabulary barriers that sometimes make it difficult to understand what your doctor is telling you. Sometimes your physician may talk over your head without realizing it. However, there are things you can do to improve your relationship with your doctor and medical staff that will help them communicate with you more effectively. The following are some tips:

• If you have several health concerns to discuss, let the receptionist know ahead of time when booking the appointment so they can allow more time in the doctor's schedule for you.
• Be sure to tell your doctor about any current and past health care issues or concerns. It's important to share any information you can, even if you're embarrassed.
• Create a “health journal” for yourself on paper or in a notebook, and bring it to your appointments. Keep track of problems you are having, the time of day they occur, did you eat before and what did you eat, etc. This will help your doctor when making a diagnosis.
• Bring any medicines you are taking with you or create a list of all your medicines. Include information about when and how often you take the medicine and the strength. If you are experiencing side effects from your medicine(s), especially if it makes you feel sick or if you think you may be allergic to it. Be sure to include any vitamins or supplements you take.
• If you are being seen for a life threatening illness it is always recommended that you never attend an appointment alone. You should always take a family member or friend along with you.
• Take notes at your appointment or have your family member/friend take notes for you.
• If you have to go alone to an appointment, take a tape recorder to record the conversation with your doctor so you can listen to it as many times as necessary for instructions and information.
• If you are having problems understanding your doctor, let them know that you need further clarification. Tell them you don't understand what they are talking about.
• Never ever leave an appointment feeling lost and not understanding what was said and what the next steps are in your health care.

Understanding the Patient - Lesson 1 - Be there

If you are a friend to someone who has cancer it is your job to help them have a better chance of succeeding in the fight against their disease. In order to do this you have to understand, as much as you possibly can, what they are going through in order to help them. This is going to be the first in a series of lesson blogs regarding Understanding the Patient.

Lesson 1 - Be There!

One common complaint I hear from patients and caregivers is that their friends have abandoned them. They don't call or come by and they just never hear from them at all. Don't be one of these type of friends. Be there!

As much as it may make you feel uncomfortable, and you don't know what to say or how to say it you must be there. You may not like the reality that slaps you in the face but deal with it and be there for your friend. Trust me if you don't you will feel guilt for the rest of your life over it.

You are not expected to have some words of wisdom that will miraculously fix everything or make them feel better about the situation. You are only expected to be emotionally and physically available for your friend. Just be there...tell them you love them, you are scared too, you don't know what to say, is there anything I can do to help you in anyway....be there to hold their hand, lend a shoulder to cry on, take food, go grocery shopping and pray with them.

Just simply be there!

HOPE FLOATS, Again!

We are definitely in a time of change. I have a new found sense of hope for our future, our children's future. I feel like for the first time I can exhale....breathe. Hope is not sinking into a pit of despair any longer....we have been thrown a life vest and HOPE FLOATS!!!! Maybe I am thinking a little to naively, but I really feel as though we have definitely taken a step in the right direction for cancer patients, health care...all of the above.I am working on developing a new Patient's Bill of Rights to send to our new President Barack Obama. I would like your input, comments, thoughts, and suggestions. Please get involved and let's help HOPE FLOAT! Let's give our new President the tools he needs to make sure the health care crisis is rectified, that patient centered care is a priority, a right and no longer a privilege for the financially wealthy.

Send your thoughts and let's get started! YES WE CAN!!!

I'm Afraid to Ask for a Second Opinion

You wouldn't believe how many times I hear my patients say they are afraid to tell their doctor they want a second opinion for fear of making them mad. Really, quite frankly I always have the same response...they will get over it. They can get glad in the same pants they got mad....that is something my Grandma always used to say. But really it is the truth, they will get over it.

Why doctors get mad about this is really far beyond me, maybe it is just above my pay grade to understand. But it really makes no sense whatsoever. You need to make sure that you are making the best decision for you and your loved one. How can you be certain you are doing that when you haven't gotten even a second opinion? I have always said I want a consensus of opinion regarding which direction I should go, which treatment I should receive, whether I should have surgery or not. I want a bunch of specialists saying this is what I believe you should do....period.

Unfortunately, many times patients do not have health insurance and your options for second opinons are fairly limited or nonexistant. There are places you can go to get a second opinon depending on your situation. For example, if you have a brain tumor and you have no health insurance you can be seen at the National Cancer Institute in Maryland and they will give you their opinion for free. And, if you qualify for a study they are sponsoring you can receive treatment, surgery, etc for free.

Doctors cannot know about every latest research advance, treatment option or new diagnostic procedure available. It is literally impossible for them to keep up on everything. But, if you are talking to several different physicians for opinions they will have a broader knowledge base than simply one physician by themselves. Statistically it just increase your chances.

I promise you that doctors get second opinions when it comes to their own health care. And, so should you!!!

I am not a pin cushion!

I apologize for not posting for nearly a month. My father has been in the hospital and my time has been very limited. Daddy has had six heart attacks in the last six months and two in the past two (2) weeks. My father is a retired dairy farmer and is 83 years old. He is a man's man, tough and strong. His arms are weathered and worn to say the least. He also has had severe vein damage due to all the IVs and medical procedures, medicine, etc. Lately we have been dealing with the problem of getting an IV or drawing blood from him.

It is the hardest thing to watch someone you love who is already in pain and not feeling well be used as a pin cushion. They have stuck and prodded daddy for blood over 50 times in the last month. And, they always have problems.

I ran into this same problem when my son Cade was diagnosed with brain cancer at the age of 12 weeks. He was a fat healthy looking little boy, full of life and laughter. But after the diagnosis we had to take Cade for monthly MRI's. The very first time we went they stuck Cade 13 times in his fat little arms before they finally got a vein on him. I swore at that time I would never let him go through that unnecessary pain again. I called the Radiologist and requested that he give Cade something to knock him out before the IV. His response was that is not standard procedure. But you know me....I am persistent and unrelenting when it comes to the people I love. I am fiercely protective. So, I then called the hospital administrator and told him what had happened. He said "well what do you want me to do about it?" and I said I want an anesthesiologist to put the IV in and for Cade to be given a sedative. The hospital administrator just said okay, I will have someone contact you with the arrangement information. From that day forward we went to the hospital at 5:00 a.m. to have the anesthesiologist put the IV in and you know what, he got it every time on the first try.

Most recently with my father I have insisted that a specially skilled nurse put the IVs in and do the drawing of blood. This has saved daddy numerous unnecessary pokes and pain. I have also insisted that if the blood is not absolutely necessary that we do not draw it. I have found that sometimes doctors will request blood without necessarily needing it at that time. Lack of Coordination between doctors often results in blood being drawn a couple times one after the other because one doctor didn't know the other was requesting blood.

You are probably asking what you can do about it yourself when you encounter this situation. My answer is simply this.....expect the best and don't settle for less. There are always alternatives to situations you just have to ask and demand that those alternatives be explored. Insist that the person drawing blood is specially trained or licensed in that area. Try neonatal nurses, Medi-flight nurses and sometimes even anesthesiologists can be used. You have to demand that they do whatever is necessary to make these procedures as little traumatic as possible.

Most hospitals also have new devices that can locate veins and arteries by ultrasound that can help them locate good veins more efficiently.