Cancer To-Do List
track
track INFOrmation
Keep track of all information (all the way back to the very beginning) for easy access when you need it. Keep medical and health information organized in print and/or digital format, whichever suits you best. Some choose to organize hard copies of their information in a 3-ring notebook or file folders. Others may prefer to store and track information using the "Notes" application (or another app) on a cell phone or computer.
Whatever format you choose, always bring this information with you to both conventional and CAM appointments. When the doctor asks a specific question, refer back to your files. Staying organized with test results, medication lists, and other paperwork will help you accomplish more in a shorter period of time.
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Keep track of advice or suggestions from friends and loved ones. This information may come in handy at some point.
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In between appointments, make an ongoing list of questions for the doctor so you can be proactive about your progress forward.
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Learn about your insurance plan so you can take full advantage of your benefits.
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Consider starting and/or ending your day with thanksgiving and journaling. You will gain so much by looking back on your journey and seeing how much you have grown and overcome.
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Learn how to access your medical records and keep them organized.
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Keep an updated, organized list of medications and supplements. This list will come in handy each time you see the doctor.
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Keep a running, updated list of labs and other tests. This list will come in handy each time you see the doctor. You can also compare your results to monitor your progress.
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From the beginning of your journey, keep a running, updated timeline of information. Believe it or not, you may forget important details as you go along.
You will most likely receive a variety of advice or suggestions from friends and loved ones about cancer treatments, dietary advice, doctors and hospitals, etc. I think one of the ways people show that they care is by trying to share any knowledge possible that will help you and your family. Many of these people have either been on their own cancer journey or have helped someone else, so many of their suggestions may be invaluable.
Once people learned about Joel’s diagnosis, I started getting messages with all kinds of advice. A close friend told me the story of a husband who learned about mistletoe for his wife and sought out that treatment for her. I had never heard of mistletoe, but just a few weeks later mistletoe started popping up everywhere in my research. The validation of each exposure gave me more confidence.
I felt grateful for all of this advice, but also overwhelmed. We were facing a lot of big decisions, and I felt like I needed to prioritize my attention. I started by simply responding to messages with something like, “Thank you so much for taking time to share this information. I will review this when I get a chance.” I truly meant it! I didn’t want to take anything for granted, and I wanted to research everything that was sent my way. I decided to save the information in the “notes” app on my phone. I entitled the note, “ADVICE LIST,” and I organized the info in alphabetical order by title. I simply copied and pasted the info straight out of a text or email into my notes each time I received a suggestion. As soon as I was able, I slowly but surely made my way through the “advice list.” We actually explored or incorporated many of the suggestions we received.
Advice
In between appointments, keep an ongoing list of questions for the doctor so nothing is forgotten. For instance, I have a “questions to ask” note on my smart phone, and as I am watching webinars or reading articles, I jot down questions for my next appointment. When the next appointment rolls around, it is quick and easy to pull up my questions. We have been able to better advocate for our health and track progress with this strategy.
Also, take notes during and after the appointment so you remember important details from each visit.
Appointments
Call your insurance company and have them help you understand what your plan covers. You will have to be your own advocate. Each plan is different, so get a clear understanding of what your plan covers, and take full advantage of your benefits.
Ask them to help you access information and navigate through their website. Print blank claim forms for CAM visits that may be covered by your insurance, such as acupuncture or even counseling. The same may apply to out-of-network doctors. Keep these blank forms in a file, ready to fill out and submit. If this is overwhelming for you, ask a relative or friend to help you.
Keep in mind, sometimes the insurance company will not reimburse an out-of-network alternative doctor, like a traditional Chinese medicine physician. However, they may deduct what you paid for that visit from your overall deductible. Every little bit helps.
Insurance
Consider starting and/or ending your day with thanksgiving through journaling. It will be therapeutic to write down your feelings and release them to God. You will gain so much by looking back on your journey and seeing how much you have grown and overcome. It is also encouraging to remember God’s guidance and comfort during your journey.
Jot down your thoughts, feelings, Bible verses, encouragement from others, what you are grateful for each day, and write about events that take place on your journey. You can also journal negative emotions, too. At first, journaling may feel like a chore, but it will soon become an empowering habit.
On the Sunday morning after we learned Joel had cancer, I began to journal about my pain and all of the moments I felt God carrying us. It is a blessing to look back and reflect on how He sustained us. My journaling resulted in this website.
Journaling
I took this photo on the beach during Joel’s treatment, and it reminded me of the Footprints In The Sand poem. God is still carrying us.
Footprints in the Sand
One night a man had a dream. He dreamed
he was walking along the beach with the LORD.
Across the sky flashed scenes from his life.
For each scene he noticed two sets of
footprints in the sand: one belonging
to him, and the other to the LORD.
When the last scene of his life flashed before him,
he looked back at the footprints in the sand.
He noticed that many times along the path of
his life there was only one set of footprints.
He also noticed that it happened at the very
lowest and saddest times in his life.
This really bothered him and he
questioned the LORD about it:
"LORD, you said that once I decided to follow
you, you'd walk with me all the way.
But I have noticed that during the most
troublesome times in my life,
there is only one set of footprints.
I don't understand why when
I needed you most, you would leave me."
The LORD replied:
"My son, my precious child,
I love you and I would never leave you.
During your times of trial and suffering,
when you see only one set of footprints,
it was then that I carried you."
Carolyn Joyce Carty
Medical Records
Access to Medical Records
Medical records can be accessed quickly and simply, but it can take several days or weeks if you wait for your follow-up doctor’s appointment to get your results. You may be the kind of person who would rather wait to have the doctor share and interpret the results, but there is a way to obtain results ahead of time. This gave us time to review them, write down all of our questions for the doctor, and feel prepared for our next appointment.
If you want to access your own medical records, below are some tips for gaining access.
medical records department
Learn where the medical records department is at your hospital or cancer center. Add the address and phone number to your contacts. You can go to medical records during business hours to get your own copy of test results. By the way, only the patient can obtain personal records. Also, doctors don't usually provide a copy of the test result. Sometimes you can even print your result from the patient portal. Keep these documents/results organized in chronological order in a notebook or file. It is encouraging to compare results over time, as you progress.
patient portal
Visit the website of the hospital or cancer center where you are receiving care, and set up your patient portal account. Save it as a bookmark on your computer and smart phone to easily log in to view upcoming appointments, test results, etc. Any time you have a diagnostic test, you will receive an email notification to log in to your portal to view the result.
Keep a running, updated list of medications and exact doses with you at all times. Do the same with supplements. You will most likely be asked for this updated list at every doctor appointment, whether conventional or CAM. It is also wise to keep your local pharmacy information easily accessible. Ask the medical office to call in your prescription to the pharmacy so you can simply pick it up when it’s ready.
Medications and Supplements
Keep a running, updated list of labs and other tests that have been conducted, or the tests you want performed next time you have blood drawn. This list will come in handy each time you see the doctor, and it will enable you to compare your results and monitor your progress.
My oncologist and primary doctor both use Quest Diagnostics for labs, so I receive my results on that website. I can choose to see my “current” result, the “reference range,” and then my results “over time.” One of the most valuable features is when I click on the “over time” button because I can see a graph showing my progress. That website feature provided so much encouragement because it allowed me to monitor my improvement. Of course, another option is to print a copy of each blood test result and organize them chronologically in a notebook to track progress.
Tests and Labs
Start at the beginning and keep a running, updated timeline of your diagnosis; notes from your appointments or conversations with doctors, and results from tests and labs. You may be asked for specific information from your journey many times during medical consultations. You may also want to look back at something specific such as a recommendation from a particular health professional. This happened to me many times; the amount of information you receive can be overwhelming (especially in the beginning) and almost impossible to retain unless you keep notes. As I became less overwhelmed along the journey, I was ready to review more information. If you keep track of your timeline along the way, it will be much easier than going back and trying to remember what happened.
Timeline
Up Next...
TESTS
Work with your medical team to assess your health status through testing and understand some of the tests that you’ll experience.