The importance of organization & reviewing your medical records…

I can’t stress enough how important it’s been for me to keep all of my medical and financial records in order. Since the start of my journey in November of 2013, I had an insane amount of paper work to keep track of. Even the educational materials I received in the form of books and pamphlets were starting to accumulate.

I immediately decided at that point to come up with a system that would not only keep my information organized, but also make it easy to travel with. A binder was the easiest way for me to achieve that kind of organization and portability. The educational materials however, I left in a designated spot at home.

I kept my binder pretty basic, so that anyone that had to access it could clearly understand my method. To start, each doctor was labeled and separated with a divider. On each section, I printed the physicians contact information. This made it easy for me to share this with any other doctor that needed it.

Now, the testing I had done could have easily been filed 2 different ways. I could separate it by location of the facility or, simply place the test results in with the physician who ordered it. I chose to place the results of each exam in accordance to the physician that requested it. Most of them were ordered by my primary doctor anyway, and I wanted to reduce the amount of dividers in my binder. Whatever method you choose, just be sure it’s the right one for you, and that it’s user friendly to the person that will be assisting you during your journey. They may need to reference it during a time you may not be feeling your best.

After a while, however, I had to keep the financial records aside because my original binder was starting to get to crowded. This was an easy binder to divide as well. I made a tab for radiology, doctors, pharmacy, hospital, Moffitt, and pathology. I also included a spiral notebook for me to keep monthly track of my expenses, as well as the mileage associated with anything medical. I highly recommend documenting these things, as it will make it easier to calculate later for your taxes. Now, you may opt to do it with a software program which is great. I just like having a hard copy of everything, just in case. This goes for medical records as well. A few people I’ve met have chosen to scan their records and keep them on a USB. That’s a great idea but, you may run into trouble if you come across a doctor who is unable to load the information into his system. Bottom line, I found keeping a hard copy to be much more effective.

My last piece of advice for today is simply a reminder. As a patient, I encourage you to exercise your right to request a copy of your medical records. Often times, your physician is able to give you a copy right after your visit. If not, most offices are happy to provide you with a copy by mail. Many doctors now even offer the option to access your chart online through your patient portal. Remember, an informed patient is a good patient. Too often patients assume doctors never make mistakes and that’s not true.

Doctors are human too, and though they don’t mean to, they can document something incorrectly or forget to document it at all. For example, you may have mentioned an allergy you now have to a medication, but while expressing that to your physician, you also mention another symptom you were having or the amazing vacation you just came back from. In the moment your doctor is intently listening to what you have to say, they could easily forget to go back and input that bit of information. I know it’s happened to me before in my own life when trying to multitask, so why would it be okay to assume it couldn’t happen to my physician. What is it that I’m trying to tell you? Review your medical records. It could prevent something terrible from happening later…

Stay tuned,
Elizabeth 🙂

 

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Today, June 18th 2014…

Though I’ve begun to fulfill what I feel is part of my purpose in life, I still feel like I’m meant to do something more. I’ve begun to share my story but, what’s next? Is what I’m doing enough? Am I really helping others to my fullest potential or is there more I can be doing? It’s a question I hope to find an answer to soon, but in the meantime, I just have to trust that my life is unfolding the way it’s suppose to, and do my best to learn from each experience I encounter.

On a completely different note, I have some growing concerns about the upcoming appointments I have next week. I’m scheduled to see my oncologist and radiation oncologist, as well as, have my first follow up mammogram since my surgery. It will be a busy day and, can I be honest with you? I’m really nervous about it. I’ve been feeling discomfort and at times pain since my radiation treatments and it terrifies me to think that something else could be wrong. I’ve reminded myself time and time again that it will be a while before things are back to normal but, a small part of me still fears the “C” word.

I’m sure it sounds crazy after how well everything has already turned out but, I suppose it’s just a natural response to the experience I had. Actually, it’s a relief to feel anything at all, considering how much time I had spent closing myself up and pretending all was well. And let’s face it, I’m in no way the poster child for perfection. I worry just like everyone else no matter how much I try to look on the bright side. It’s taken some time, but I’ve come to accept these feelings, and have learned that it’s not thinking about negative things that will hurt you, it’s dwelling on them that will keep you from moving forward and accomplishing the goals you’ve set out for yourself.

As my appointment date gets closer, I will be sure to pop back into the present and give you an update. For now however, I will continue to share what I’ve already experienced. Thanks for reading! 🙂

Stay tuned,
Elizabeth 🙂

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The second addition to ” My Oncology Team”…

Today I was scheduled to meet with the radiation oncologist. This time, since it was so close to work, I booked the appointment late in the afternoon. When I walked in, the office was very quiet and there were two very cheerful young ladies sitting behind the front desk. After signing in, I was given a stack of forms to complete. “There goes another tree with my name on it”, I thought to myself. I quickly filled them out and returned them to one of the girls behind the desk.

I don’t recall waiting very long before the nurse called my name and lead me into an exam room. This office was very different from the last. There were no windows in the exam room I was in and it was lightly decorated. It didn’t feel as cozy or welcoming but, I later found out that it was due to them relocating to a much nicer facility. In any event, I wasn’t aware of that at the time so I became a little nervous, not knowing what to expect. Was the lack of decor suppose to resemble my new doctors personality? I knew she was a female based on the name but I hadn’t heard anything more about her. Was she going to be cold and dry? Well, I was about to find out.

As my brain was trying to connect the pieces of the puzzle, I heard a gentle knock on the door and in came the doctor with a huge smile on her face. She instantly lit up the room and gave it the makeover it needed. She introduced herself and with just a few words I felt an instant connection. I could sense that she was a very kind and compassionate person.

After a little game of “let’s get to know each other” she asked me to change into a gown so that she could take a look at my incision. I was still healing well which was great news because I was ready to start treatment as soon as I was cleared to do so. I wanted to make sure that there wasn’t even one cell that could do me harm left behind.

She explained I needed to give my wound a little more time to heal and since I was also going to Moffitt for a second opinion, she recommended I wait to see what form of treatment they suggested before going any further. If chemotherapy was needed, I would have to wait till I finished the chemo before I could move forward with radiation.

She also wanted me to schedule an appointment to see a genetics counselor so that they could test me for the BRCA 1 and BRCA 2 gene. The fact that I was so young and with no known family history of breast cancer was starting to raise suspicion. If indeed I was positive for either gene, I wanted to do anything I could to prevent someone else in my family from going through the same thing I was. I had a younger sister and two nieces to think about. With a positive gene, the recommendation is to have a double mastectomy and hysterectomy as your risk of breast and cervical cancer are much higher. This was important information to pass on and it would be selfish of me to keep it to myself.

My doctor asked me how I felt about the possibility of not having my own children, should that be the case in the future, and I remember thinking, “with all of the kids in the world that need a good home, why on earth would I want to risk passing on a faulty gene to my offspring”? I had always been happy with the idea of adoption. In fact on a more recent note, prior to my diagnoses, I had decided that it was the best option because I didn’t want to be pressed for time by my “biological clock”. It was hard enough with society wondering why at 31 I wasn’t already married with children.

The truth is, I wanted to experience life more without the responsibility of having a child. I didn’t want to conform to societies belief that at my age I should already have children when I knew I wasn’t ready to give up certain freedoms that came with not having them. Who made up that silly rule anyway and when did it become so taboo to decide not to have children? I don’t think my doctor was to convinced but, she listen to my reasoning, gave me a smile and reassured me I was going to get through this. I was very happy to have her on my team.

Once I left the office I immediately called the genetics counselor to schedule my appointment. I would soon be on my way to Moffitt and I wanted to get as much as I could done before arriving. Little by little I was checking off items on my to do list and slowly I was able to see the light at the end of the tunnel…

Stay tuned,
Elizabeth 🙂