Becoming your Own Medical Advocate

When medicine is big business, we have to become the CEO of our bodies.

I’ve found that when dealing with illness or pain, we often feel like our health is one big mystery; we act as if what’s going on in our bodies is none of our business. But I say this is the only body I’ve got, and you better believe I’m going to make it my business! We should all feel empowered to learn about our illness, to ask informed questions, to work with our providers to find alternatives and to ensure that our voice is heard.

Here are a few things that I have learned from my own experience:

Scan Anxiety

Waiting on test results is always more frustrating than any pain I may need to endure while I’m having the test.  

A tip to keep in mind:  Find out how your physician handles test results beforehand. Some offices call patients with test results only if there is a problem. If in doubt, or if you are anxious about test results, call.

MRI’s: Are you tech savvy? Get access to your electronic medical records. You can check the results without picking up the phone. I may not understand everything that I am reading, but I can compare my previous scan to see if there has been any new progression. For me, this takes away more than sixty percent of the stress and anxiety. 

PET Scans: I have my PET scan done at our local hospital. I go first thing in the morning. Hey, I am fasting… and why wait all day? At the end of the workday, I  head back to the hospital, and I am able to pick up a copy of the scan results and read the radiologist’s notes. Again, for me, this keeps any excessive worry in check. Just call me a control freak. It is my body, my cancer, and my choice to know whatever is going on quickly. But if you aren’t able to get your results other than by waiting on your doctor, then do keep in mind that no news is almost always good news.

Study Up on the Facts of Your Illness

Much of my research has been done by joining private Facebook groups. The people in these groups and I all have similar diagnoses, and I learn through their experiences. Keep in mind, if you are part of one of these groups, the people in them are not medical professionals. So just beware of going down a rabbit hole!

Write down questions you want to get answered as they come up. Keeping them on my phone works well for me. It isn’t always easy to remember what you want to ask your doctor from appointment to appointment. Having the questions on my phone is helpful for me, my husband, as well as my oncologist. I have also found that when I am able to ask my questions using medical terminology I often get better results.

It is my body and my decision.

We all know our bodies better than our doctors, but did you know that we can get to know it even better? By beginning the process of tuning into your body (through meditation, journaling, food diary analysis, mindful breathing) can help you to accurately convey symptoms and feel more connected to what’s going on in your body.

Who are Your Teammates?

Assemble a care team that wants to work with you and foster your empowerment. Don’t be afraid to make changes if you don’t feel supported by your health care providers — it’s meant to be a two-way relationship.

After six months of treatment, I fired my oncologist. I felt like a number. For all the time I would spend with this specific doctor I knew if he saw me outside of his offices he would have no idea who I was. My oncologist is someone who will be treating me until the end, and I needed to feel a connection, which was lacking. So as uncomfortable as it was, I spoke up. It was the best thing for me, and I am so grateful that I did. My relationship with my current oncologist could not be better.

Do You Need an Advocate?

You may have heard of people having health advocates that accompany them to doctor visits or a family member who acts as an advocate. It’s always great to have another pair of ears during appointments to ensure that nothing is missed. I highly recommend having your own form of an advocate if you don’t yet feel comfortable on your own.

Take the time to consider how you will show up as your own medical advocate before your next scheduled doctor visit.

Take it Off

Did you know that not all chemotherapy drugs cause you to lose your hair?

But for those of us who need the nasty hair removal chemotherapy, you have about two-three weeks from your first infusion before your hair begins to fall out. Like everything else in my life, I had a plan for how I would take some control of the situation.

Before starting treatment, I had shoulder-length hair. I had my hair cut into a cute pixie style before my first chemo appointment.

On day ten post-chemo, I noticed my hair was feeling dry and brittle. When I gently tugged on it, a few hairs came out. This was a strange, emotional moment for me. I took a couple of deep breaths and called my girlfriend, Jen.

Her assignment was to get our group of friends together for a party. It was a specific group of people that I like to refer to as my tribe; I had emotional connections with each person who was invited to The Buzz Party.

I chose to turn this emotional experience into a celebration, and A few days later my tribe gathered together at our home. We shared a meal together, then it was time.

We enjoyed a beautiful evening outdoors, and each member of my tribe took a turn first trimming off my hair and then buzzing my head.

I did not have a mirror to watch; however, I could see my reflection in one of the windows of the house.

I would watch my hair fall to the ground. I could see the bowling ball that now sat on my neck. I felt emotional, but it wasn’t about my hair.

I looked at each of these special people in my life, knowing that each one of them loved me; on this particular evening, the connections were stronger than ever. One friend even shaved her hair off in support.

We took so many videos and photos of that evening, and I will always remember shaving off my hair as the wonderful experience that it was.

Let’s Do This – Chemo Day Number One

Before I went into the chemo room, we met with my oncologist. It went something like this-

The doctor walked into the exam room and said that he had the results from my CT scan.  He told us that I have numerous small spots in both my lungs, one large and one smaller spot on my liver, and a spot on the bone of my back.

Then he paused.

He went on to say that if I wasn’t emotionally up to having chemo today that we could reschedule. He paused again.

I remember thinking, “That’s weird”….  He had just told me that the cancer was by far worse than we had all expected. And yet he asked me if I want to go home and think about it? Once I got out of my head the only thing I could think to ask was about our previous chemo discussion. Is the treatment changing with all the new results?

He said cancer had already progressed and the treatment would be aggressive. I had planned for chemo today so I wasn’t leaving without it.

The oncologist asked if I had any other questions.  I just looked at Steve, and he asked the hard question, “What is the prognosis?”. “The short answer? Two-ten years.” And that was pretty much the entire conversation.

I was just told “you are going to die from cancer”.

I remember a few minutes later sitting in the chemo room. Looking at Steve, I realized that my 80+ year-old parents may outlive me. In that moment all I could think to do was cry, but I looked around the room at the other patients and thought it didn’t look like their day was going too great either, so I held it in. Six hours later I had finished that first chemo treatment. The Oncologist never even came back to the chemo room. Left in complete shock, we headed home.

 

Tumor Markers, Herceptin, Her2+, Oh My

The first nine months after diagnosis I did very little to educate myself about what was going on with my body. I remember reading one published article in Time magazine and, I was done. Honestly, it was just too scary, and it was less stress for me to show up for my treatment. It felt a bit robotic, and that is ok because it worked for me. I’d head home from chemo, feel like shit for a few days. When I felt a bit better, I’d go back to work and 3 weeks later rinse and repeat. As I got used to this new routine time passed and about ten months later I started questioning everything. It was then that I realized I knew very little about what was going on medically. Tumor markers, Herceptin, Her2, BRCA just to name a few. I remember I felt thrown into a whole new world I hadn’t even known existed. So many terms and phrases were tossed around. After a while, I chose to stick my head out of my shell and start to learn this foreign language.

 

 

Got Hope?

Hope may just be the best word in the English language. It has synonyms like #expectation, #longing, #desire, #confidence, #trust, and #faith. We use it when we want to describe some of our deepest emotions, with phrases such as our only hope, no other hope, false hopes, and the saddest one of all — no more hope.

Hope can take so many different forms and meanings and even change from hour to hour, but I believe it is one thing all cancer patients and their loved ones can agree they need.  Hope won’t come easily for all of us. You more than likely will have your own way of dealing with your diagnosis and your own way of finding hope. For me it has been finding hope in moving forward. 

I knew from the beginning for me to keep hope means to live my day to day life exactly like I was prior to having the word cancer in my life. Ok, so not exactly. Remembering all of things I had hoped to do prior to “D” day… Well those things, I do them all post “D” day without hesitation. Moving forward and living the life that I have always dreamed of helps me keep my hope. I choose happiness and I choose hope. I have found that when I choose to be happy I am also choosing to be hopeful. Yes, I have a terminal disease that will one day end my life. But we all have an appointment with death and I choose not to feel sorry for myself.

Thinking of all #cancer #warriors when the progression of the disease has taken its toll. The options of treatment have long past. What kind of hope do they find as they lay in hospice? Hope in no more pain? Hope of their families carrying on without the disease’s limitations no longer a part of their lives?

I am blessed to be doing well with my current treatment. I will have other treatment options when necessary. And in the meantime I am working on living my life to the fullest and working on keeping the hope for peace in my heart when my time comes.