How was I going to organize all of this info? After all, I was about to be overwhelmed with a flurry of doctor appointments and medical jargon. This was so overwhelming. I needed to make sense of it all.
Before you start chemo, you have to attend Chemo Education. I had never heard of Chemo Education. Chemo Education is scheduled with a nurse. My nurse was the sweet nurse from Dr. Wonderful’s office. I am going to refer to the Hematologist-Oncologist/Chemo Doctor as Dr. Wonderful. Doug, my husband, went with me to Chemo Education. The clinic suggests that you bring at least one of your care givers. I had my calendar with note paper in the back and I was ready to take notes.
The nurse went on to explain…
1. 4 weeks of AC chemo every other week… with this chemo you may experience the following side effects… sores in your mouth, loss of nails, nausea, vomiting, fatigue, body aches and pain and you will lose your hair. This chemo was known as the red devil. After each cycle of this chemo, you will need Neupogen shots. (Neupogen shots stimulate the production of white blood cells. The shots will be needed between 5-7 days after each treatment. It depends on results from lab work.)
2. 4 cycles of Taxol and Herceptin (No extra shots with this chemo. YAY!) With this chemo, you will experience the same side effects as the AC chemo. Your hair will not begin to grow back until this chemo is out of your system.
****Everyone responds differently to chemo. The nurse did say to eat protein and foods that contain potassium. Also, the acrylic nails must come off immediately. (I loved my nails. As an Assistant Principal, I would attend meetings at school and at the district level and I liked for my nails to look nice.)
Information Overload and How to Organize It All
As I returned home with handfuls of information, I realized that I needed to organize all of this information so I could find it as needed. I had a couple of small piles already…. chemo info, notes from two doctors and my mammogram and CT report. I decided to organize the information in a 3 ring binder.
I set up the notebook according to the following categories:
2. Doctor’s visits – I took notes at every conversation with each doctor, filed it by date in the notebook and put a copy of the notes and the lab reports in a plastic sleeve.
3. Copies of all Test…CT Scans, PET Scans, MUGA Scan, Pathology Reports, Echocardiogram, etc…
4. Miscellaneous Information
I took my notebook and calendar to every visit. I had questions written ahead of time so that I didn’t forget anything. As I sat in the chemo chair receiving the infusion of chemo, I organized my notebook. When I got my very first chemo, my nurse, Jerry, asked me what my notebook was for and I told him that I take notes at every doctor’s visit and ask for a copy of my chemo orders and all lab results. He replied with something like, that’s a good idea because we aren’t Jesus Christ. We aren’t perfect.
One more tip about the organization of the notebook. In the front of the notebook, I had a 3 ring pencil pouch so that I would always have my writing tools and a 3 ring business card holder. I kept a business card from every doctor and everyone affiliated with my treatment.
The most important thing that I want you to remember is that you are in charge of your health care decisions. You can research your doctors, be an advocate for yourself or designate an advocate. You are more than a statistic. You are so important to God that even the hairs on your head are all numbered. (Matthew 10:30 NIV)
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