Top Ten MBC Supports

While I was out walking the other day, I passed the home of a student I had taught a few years back. I’m still friendly with the student’s mother and she was out working in her yard. Our paths have crossed more over the last few months. We have some similar interests and both like supporting our community. On this particular day, she shared that a cousin out in New York City had been diagnosed with metastatic breast cancer. Active. Mid-thirties. A new mother. It’s unbelievably hard to process at any time in a person’s life, but I understood it was hitting her really hard during COVID-19 in a geographic area that has seen astronomically high numbers of cases and deaths from the virus. I am calling her Marcie which is not her real name.

I know what’s like to be going through active treatment during a pandemic in Wisconsin. My lens is what I experience and what I see through network news. I don’t know exactly what life is like for Marcie, but I empathize. I know far too well what it’s like to have life repeatedly turned upside down. My friend asked if there was anything I could share with her that she could pass on to someone newly diagnosed with stage iv breast cancer. We talked a bit longer and I said I would message her a couple of ideas.

I found I couldn’t limit it two or three tips as I thought about what to send. There are many things I’ve done over the years. Some pieces fit into my life better than others. Everyone has their own list of what works for them. I thought about what worked for me, what still works for me, and came up with a top ten list that I sent my friend. Marcie and I are now in communication. I share my list as today’s post.

Top Ten MBC Supports

  1. Take a health journal with you to appointments. Use it to note vitals, take notes, keep a list of questions, document side effects, file test results, etc. I am on my third binder. My notes helped me understand appointments better, remember them, and sometimes I needed them if my oncologist said something that I found contradicted something earlier. A health journal provides a source of accountability.
  2. Consider buying Radical Remission by Kelley Turner. This is the top book I’d recommend from all the cancer ones I have read. I heard she also has a podcast. I haven’t listened to the podcast. I am cheating a bit with this point because it contains much of the advice you would suspect to hear on nutrition, stress, and more. It examines 9 factors that long term survivors have in common.
  3. Belleruth Nepartsek has a guided imagery CD that I downloaded early on in my diagnosis. It was called “Fight Cancer.” I listened to a guided imagery segment and an affirmation segment daily. I am sure she has several guided imageries. The one I like involves a real or imagined place outdoors where you are surrounded by supporters that you know or may not know. It was often in the afternoon when I felt fatigued and I would fall asleep as I listened. I still listen to it every so often. I find it empowering.
  4. Comfort foods are good. When you feel sick, you need to eat what keeps the vomit demons at bay.
  5. Exercise as you are able. Even if you don’t feel like it. Try to do a little walking every day to keep moving. I wasn’t always good at this. Now, it is a priority every day.
  6. I found essential oils helped with anxiety and nausea. They are not to be ingested. Just inhale. Lavender, peppermint, and spearmint work well for anxiety and nausea.
  7. You may have to set boundaries with others on what you need and don’t need. It’s okay to say no thank you. Don’t feel pressure to accept invitations or share information just because someone asks insensitive, none of their business questions.
  8. Some people you may not know very well will rise up and sincerely support you. Let them in. Keep in mind those boundaries. Some people you’ve known for years, perhaps some family members and close friends, may disappear because they honestly can’t handle your situation. Let them go.
  9. Advocate for yourself. Ask questions. Be persistent. Be knowledgeable. These qualities make you an assertive and strong patient – not annoying or difficult. Look into your rights as a patient. Know your rights.
  10. Ignore statistics whenever possible. You are not a number. I was given literature to read before initial treatment even started. I could see it contained percentages on survival rates . . . and I threw it out unread.

Bonus Support

I forgot maybe one of the most important things I’ve internalized . . . DON’T GIVE UP. There is a lot of research happening on the metastatic breast cancer front. Ask about it. Research the research on your own. One of the best things I did was some special genetic testing through FOUNDATION ONE that identified some new mutations in cells. Mutations that can be targeted.

Don’t give up. Keep searching to find a way.

Always.

Thoughts on Oncology

Doctors’ roles are essential in healing.

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They should not be minimized or discounted. Cancer research will someday find a cure for what has affected us personally and our families. I am in awe for the dedication and care I have received. Traditional western medicine is only one route to choose. I know many who have stuck to this road with little question if something additional should also be done. Maybe they didn’t need or desire anything different. Maybe they didn’t know they could ask for anything else. Cancer was a six-month detour that blurred more with every passing year. It became part of their past.

However, if you only drive down Main Street, you only experience one part of a town. Side roads and rural areas are well worth the ride. They offer something different. You don’t have to travel only one or the other. My opinion is both are necessary to live well and/or be cancer free. You are the patient and in control over decisions that affect you. My healing plan consists of many side roads and rural areas that have made a positive difference for me. I am the common factor and pull it all together.

It has been so much more than a six-month detour for me. Parts still have blurred. I have traveled on many roads to get where I am today.

It seems strange that I haven’t blogged much about chemotherapy or my oncology appointments. Chemotherapy has been a focal point for far too long. It sucks energy and manifests more physical symptoms than I care to list. It sustains life while it kills cells. Chemo is reassuring and comforting in its own way. It ranks high as a huge part of my healing plan. I have hit my 100th treatment. That’s pretty significant. It isn’t a celebration, but I am checking off the box and moving on. I am still here.

There are so many other aspects in addition to active treatment that I think are also important to an integrated approach to a cancer healing plan.

A strong doctor-patient relationship is vital for my living as healthy as possible.

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The relationship I have with my oncologist is a really good one. He deserves credit for sticking with me, listening to me, and working for what I want. He knows how I feel. Yes, I’d love to be someone who visits her oncologist once a year, and eventually less than that, but it’s not the kind of survivor I am. I’m getting active treatment. I go to my doctor a lot. Sometimes it means I may be a pain in the butt. I do get all my questions answered. I even come up with some good ideas from time to time. The good news is my oncologist doesn’t have a chance to forget about me. If I don’t speak up for me, who will? I am my own best advocate.

Oncologists differ from one another. They’re human just like the rest of us. I met with a couple oncologists at Mayo Clinic in Rochester, MN, shortly after my initial diagnosis. Overall, they agreed with the treatment plan suggested at Carbone Cancer Center in Madison. Mayo was more open to surgery options. I liked them quite a bit but it was just too far a trek for regular care. I had top-notch care a few mere miles from home.

A couple of years ago I sought out another second opinion within my provider network and it wasn’t very helpful. It wasn’t hurtful either, just not worthwhile. This oncologist let me know what his opinion was on my options. I let him know what I thought of his limited research. He was not open to complementary cancer supports. I was not a good fit with this oncologist. In my opinion, he defines healing with a very limited scope. Every once in a while I see a clip of him on the local news. He has a great reputation, but I am so glad I have the oncologist I do, who also has an excellent reputation. My position is that healing includes many different aspects that work together.

I’m going to repeat that: Healing includes many different aspects that work together.

No one heals in a sterile petri dish or test tube.

My health journal helps keep all my medical information together.

A health journal has been incredibly useful for my oncology visits. It really helps with dates and specifics as to how I’m feeling, my questions, how and when medications were tweaked. I am a planner. I make the most of the short time I have with my doctor. Sometimes it isn’t so short, but again, that’s the kind of survivor I am, and I’m going to take the time I need. My health depends on it. I believe one reason I’m still doing well is because I’m able to keep really detailed notes to report to my doctor and have one place to keep all my information.

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I’m also more of an anxious person than I used to be. Cancer and anxiety go together. Keeping a health journal eases some of my anxiety because it gives me power. An added benefit is the built-in memory that naturally exists with documentation.

Ask questions. A short office visit doesn’t suffice for what I need to feel as a satisfactory visit, even with my health journal in tow. It wouldn’t hurt if office visits were about ten minutes longer than they are now. The oncology nurses are good resources in getting word to your doctor, as is electronically messaging your doctor through MyChart or any similar online technology. I am important enough, and so are you, to have your questions and concerns answered and acknowledged in a way that you understand. It is okay to disagree. I do believe everyone is there to advocate for your best care, but that doesn’t mean you blindly agree to something you don’t understand or have reservations about. There may be something even better for you.

I do believe the answer, a cure, lies in research and things like immunotherapies, targeted treatments, genomics, personalized medicine, and medical advances that haven’t happened yet.

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This is why research for advanced stage cancers is so important. More research dollars need to be allocated to advanced stage research! Click here for some suggestions. There needs to be a lot more access to better treatments and drugs that are more effective for those of us living with secondary cancer. We deserve access to advances in immunotherapies, targeted treatments, personalized medicines, and new therapies. It isn’t an option to run out of options. Keep telling your oncologist this over and over again. They meet with the other oncologists in their network to discuss cases. If they keep hearing these demands from patients, it’s more likely medicine will go in this direction.

Keep speaking up.

Patients can help steer these discussions by continuing to advocate for what they need in their office visit.

Healing and a cure are not interchangeable. A cured person may not be healed. Trauma, fear, and other physical or emotional issues can still interfere with living fully. Healing and a cure will inevitably overlap as healers, doctors, and patients work together. Stranger things have happened. Healing and a cure absolutely can overlap. I keep striving for both.

I am ever hopeful I will find a way. Always.