Getting Organized The Key to Regaining Control And the day came when the risk to remain tight in a bud Was more painful than the risk it took to blossom. Anais Nin. French-American Poet: 1903-1977 49
IN THIS CHAPTER GETTING ORGANIZED KEY PREPARATIONS FOR THE BATTLE AGAINST A BRAIN TUMOR Creating the notebook A medical dictionary Separate file for all medical/insurance bills and correspondence Planning not to get overwhelmed 50 ÑKey search words organization keeping records laboratory & scan reports second opinions clinical trials support, friends and groups notebooks diary
KEY PREPARATIONS FOR THE BATTLE AGAINST A BRAIN TUMOR It pays to be organized whether you are fixing a leaky faucet, meeting with your tax accountant, or getting your automobile s transmission repaired. The principle is the same in overcoming a brain tumor: organization of your information is the key. Through my experience with thousands of patients, I have found four activities that are essential for your success: Creating the notebook; Having a medical dictionary; Keeping medical related bills and insurance papers in one place; and Planning to not get overwhelmed. Getting Organized STEP 1 CREATING THE NOTEBOOK Organizing your medical information is the first step in regaining control of a situation that might seem out of balance right now. It may sound silly but I suggest you follow the steps in making a medical notebook. Later, you can decide if it was good or bad advice. Having this data at your fingertips saves significant time and aggravation, because records are lost or not available when you most need them (like midnight in the emergency department). In the words of the poet Dylan Thomas 1, a notebook is your first step to rage mightily against the dying of the light. Materials I Need to Get Started You need to obtain the following materials and assemble your notebook as soon as possible: 1. Three-ring, loose-leaf binder 2. 10 dividers, labeled as they appear in Sections 1-10 below (Table 3-1). 3. Notepad or loose-leaf paper, lined, three-hole-punched (for Section 6) 4. Two types of plastic storage sleeves 8.5 x 11, three-hole-punched One holds business cards (baseball trading card size) with 5 x 2 = 10 slots/ page. These can be found in office supply or drug stores in packages of 10 (e.g., Wilson-Jones #21471 Business Card binder pages ) (Section 1). The other is to hold several CD-ROM disks. (Section 4) 51
Table 3-1 Content of My Survivor s Notebook Section 1. Business Cards or Who s who? Section 2. Pathology Reports Section 3. Laboratory Reports and Blood Tests Section 4. MRI and CT Scan Reports Section 5. Second and Third Opinions Section 6. Questions and Answers at Doctor Visits Section 7. Medications: A Summary Section 8. Resources and References Section 9. Calendar Section 10. Summary of your medical and surgical history Using My Notebook Section 1 Business cards or Who s who? Business cards of doctors, consultants, health professionals, social workers, insurance companies, and case managers are easy to find when inserted into the 5 x 2 plastic slots. When you meet with a new professional, write the name and contact information in this section. If you obtain a business card, place it in the sleeve or case no more searching under couches, through drawers, and in handbags for a name or phone number. Your time is too valuable for that. Section 2 Pathology reports This is absolutely critical information. Many patients will have major brain surgery (costing thousands of dollars) to confirm a diagnosis and, hopefully, reverse damage caused by a tumor. Yet, they do not know what their pathology report Accurate diagnosis of your tumor type is essential for correct treatment. Having the pathology report is key. actually said, nor do they have a record of it. Trust me: Taking hold of your own pathology report empowers you. It is about you; the report is yours, and its accuracy is essential for correct treatment. An analysis of brain tissue and final diagnosis by a pathologist can sometimes be controversial and unclear. Moreover, some oncologists will conduct treatment based on a verbal statement or written note by the patient, without ever confirming the diagnosis by personal review of the tumor tissue slides. The following is a true story to illustrate the importance of having pathology reports in your possession: 52
In the Fall of 2000, James, a 36-year-old stockbroker from New York City, consulted us for a second opinion about a very malignant, fatal tumor. He brought copies of dictated notes from his oncologist, who was based at a major New York medical center, along with records of his medical history, examinations, and tests. We did not feel, however, that his young age, history of seizures, and two years of headaches fit the diagnosis of glioblastoma multiforme. The pathology report read, The tumor had flecks of calcium in it, as well as cysts, and not much swelling ( edema), which is consistent with glioblastoma. Fortunately, James had his MRI scans (at home) and the actual tumor specimen was sent from the hospital for our review. With this data, it became abundantly clear that the general pathologist had overinterpreted the features of the tumor. James did not have a glioblastoma, but rather an oligodendroglioma, a tumor that is much more responsive to both chemotherapy and radiation and consistent with a longer life. Getting Organized Without the actual written pathology report for me to review, this young man may have been condemned to a dismal prognosis and needless, inappropriate therapy. The initiative he took to keep his own records saved his life. Doctors can help you make decisions if they have the complete set of data on which to base their recommendations. (See Chapter 5: The Team; and Chapter 8: Traditional Diagnosis.) Section 3 Laboratory reports and blood tests Why are you collecting these reports? Isn t the hospital or doctor supposed to do this for you? As if you don t already know, it isn t a perfect world. Having these records immediately available saves a lot of time in delays and mix-ups caused by the continual shuffling of your files. Reports can easily fall out from charts, be misfiled, and become lost. You can hand the doctors or nurses the critical information they need on the spot. Immediate access to the records within my patients personal notebooks has spared them countless hours of waiting and even the need to have extra tests. An example: When I calculate chemotherapy dosages each month for my patients, I must have their blood chemistry profiles to ensure that their bone marrow, liver, and kidneys can handle the medication. In order to calculate the proper dose of drug, I also need to know the levels of their complete blood count: red cells or hemoglobin (for carrying oxygen); white cells (for fighting infection); and platelets (for clotting). When results are not readily available, this requires a call to the lab, a wait until they locate the results, and then a delay while waiting to receive a FAX copy of the report. A Tracking Form to record your hospitalizations or clinic treatments is available, if you wish to use it. (See Table 3-3.) Bottom line: Organizing your medical information = regaining control = power. 53