And How To Deal With The Crisis
I am sitting here in an emergency room with my seven year old daughter. Her skin is so pale it looks translucent. She is watching TV and I am waiting. Feelings of dread started when the second blood draw was done and the nurse has an additional medical staff member with her. As the label was being put on the vial of blood one recited my daughters full name and date of birth. It appeared that a witness had to be present for this second vial to verify the blood was Kayla’s and to ensure that there was no mistake when the results came back the same as the first test. Oh, no, this is really, really, bad. But all you can do is sit there and wait for whatever is going to come. Stomach balled up, trying to look completely normal while everything in your head is screaming at a full roar.
A small, gentleman doctor came in and sat down across from me and he said the word LEUKEMIA… I can’t remember any other words he said. I jumped out of the chair and ran out of the room while trying to suppress my wails of grief. (I had lost two adult friends to leukemia so I thought the doctor had just told me that my daughter was going to die.)
Now, when I look back at that time, it feels like a bad dream. One thing that is incredibly upsetting to me was that the diagnosis was given to me in front of my sick child. I think that is just wrong! Have a nurse sit with the child and take the parent to another room where the bombshell can be given in privacy. This way the recipient can deal with it in whatever way they have to: grief, anger, yelling, however they are so inclined. When they come back to their senses the parents can then go face the child and begin their new journey.
A diagnosis is a clinical summation of what has been found through blood tests and many other tests. No matter what the diagnosis is, there is a factor that is not in those tests. That factor is the human spirit and what is possible when a person comes face to face with an incredible challenge. A walking testimony to this factor is Lance Armstrong who had testicular cancer which metastasized into his lungs and brain. He had a 3% chance of survival. Not only did he survive, he then went on to win the Tour De France seven times which has never been done in the almost 100 year history of that race. Yes, he is a spectacular survival story. He went on to set up The Lance Armstrong Foundation which has countless cancer survival stories in video and print. Some of these stories are just as spectacular as his. For each individual that makes it, they have won a race against their disease and the prize is Life. It is pretty spiritual when you realize what you are up against and the inner reserves of strength you will find.
Steps To Start Winning The Battle
Decide as a family on what your going to do. For example, I stopped working because my husband makes the majority of the income.
Study the disease to get a basic understanding of your disease and the mechanics of the disease on the body. What does it do? What are the damages? These are the things you need to learn so that you can formulate and plan your future strategies. The best website for simple explanations of cancer iswww.huntsmancancer.org. The center column has a space for you to type the kind of cancer that you have and then it will give you many pages to go through. I loved the fact that they have it in easy to understand language.Get a notebook with plenty of paper.
Keep a detailed diary. Take notes when the doctor’s speak to you. Write down specialized terms so that you can look them up later. If the doctor has to spell a particular term, do not be shy, get the spelling.
Purchase Lance Armstrong’s book, It’s Not About The Bike. To me, his illness and battle are applicable to any dire physical situation because he describes many details of how he mentally viewed various aspects of his illness, and these you can learn from.
It is not recommended by the doctors to do research on the internet. There is a glut of information with out the importances separated out. If you feel compelled to research on the internet then go to medical websites such as www.medscape.com.
Find books through Amazon.com that are specific to your illness. Make sure you read the reviews of the books before you make your purchase. This is why I prefer to purchase from Amazon.com because you have feedback from many people about the book. If you are dealing with cancer, do not purchase any books that have herbal remedies in them. (Much more on that later.)
Once you have an understanding of the illness and what you are dealing with, it becomes much easier to break the news to family and friends. This is very key. If the news can be as positive as possible this will help rally your troops. This might sound like a cliche but it isn’t. A battle with any debilitating disease requires help from many sources to get through it. So, if you are like me and had a hard time asking or accepting help, get over it quickly. There is no time to waste on trivial matters. Grab the bull by the horns and get moving.
Get print-outs of the medications prescribed for the condition. The hospital usually gives them to the patient, but I found that a minimal amount of data is given on these preprinted sheets of paper. The internet is very useful for drug information and side effects. Print these out and put them into your binder/notebook.
Your going to have to get organized in your life. The whirlwind of diagnosis and treatment is very traumatic. Take segments of time to spend learning and then start to get your new life into place. Just attempt to get into the new, medical routine. More will come later. Try to establish a routine and once you have it in place know that it can change at any time due to the medical circumstances surrounding the condition. In my case, it seemed as if every time I got the routine in place and felt in control something would happen with the doctors and our situation and everything went into a new routine. New drugs, new medical appointments, even new prognosis, etc. So steel yourself for any surprises. Now that I know that, it has made life easier.
The best book I found is COMPREHENSIVE CANCER CARE by James S. Gordon, M.D. and Sharon Curtin. This book really guided me on so many levels. I actually feel like it saved me mentally so that I could help my daughter. There are many tools that you can use on an immediate basis to help yourself or a loved one dealing with any debilitating disease.
Do not consume grapefruits unless your doctor specifically states that it will not affect your medications.
DO NOT CONSUME VITAMINS OR HERBAL PRODUCTS WITHOUT GOING THROUGH YOUR DOCTOR FIRST.I always print out, or, copy from a book, the specific information for a supplement and bring this to the doctor to look at. Sometimes I have gotten labels printed from the internet and brought them to the doctor. With medications you are taking a dangerous gamble if you choose to self treat without the doctors consent!
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