World Cancer Day – Previvorship

Previvor is one of those words I had never heard of until I was suddenly thrust into the world as a previvor myself. I suppose I have technically been a previvor since the moment of my conception, but I did not know I was a previvor until a genetic test, fueled by anxiety over my family history of cancer, revealed the truth.

Previvor: A portmanteau of the prefix “pre-” and “survivor”

Previvor: Someone with a genetic risk factor for cancer who has not yet been diagnosed with cancer.

Previvors include a wide swath of people. Like me, you may be one and not even know it yet. Among the first to really claim the “previvor” title are the many women (and men) who have been diagnosed with a BRCA mutation. A DNA error that, thanks to celebrity advocates like Angelina Jolie, is well-known to cause an increased risk for both breast and ovarian cancer, but also prostate cancer and pancreatic cancer, among others. Though most who get tested for BRCA (both 1 and 2) are women, due to the risk of female-associated cancers, men can have the BRCA gene too, and it also increases their risk for breast cancer as well as the cancers mentioned above.

But BRCA is far from the only high risk cancer gene. In fact there are a wide variety of Hereditary Cancer Syndromes (HCS).

Read the rest of the story over on Medium.

Advertisements

What It’s Like to Live with RA

I should say up front, that my RA is mild to moderate. I am seropositive, which means my disease course is likely to be more severe, but I feel pretty good most days right now. And I have every reason to hope that diet changes (like trying AIP) and lifestyle changes (like hitting the gym and practicing relaxing self-care) along with medications will slow my progression and possibly even put me into remission completely!

Most days I wake up a little stiff, morning stiffness is one of the hallmarks of RA. For me it’s usually in my back and hips, which makes it hard to stand up straight when I first get out of bed. My joints also tend to pop and crack like crazy those first few steps in the morning. I’m like a bowl of rice crispies walking to the bathroom to start my morning routine.

Some mornings I skip breakfast and choose to fast, but when I eat breakfast I usually grab something quick like yogurt with berries or leftovers I can quickly reheat. I like to sleep in as much as possible. Sleep is super important and I am a person who needs a lot of it, even before my diagnosis. So if that means I don’t have time to cook my own breakfast every morning, that’s a sacrifice I’m willing to make.

I head to work around 8:45 am, and when the weather is nice, I’m fortunate to live close enough that I can walk to work! It’s just under a mile, so it’s a great way to get in some good movement and vitamin D sunshine at the beginning and end of the day. (I was so tired this past summer that I rarely did this, I have been feeling well enough to do this 2-3 times a week so far this year!)

I’m a librarian and I’m fortunate that my position keeps me moving throughout the day. I’m not on my feet all day, nor do a sit all day, I’ve got a good mix of resting and moving which is good, it keeps my joints from gelling up from being in one position for too long. One of my early symptoms was hip pain after sitting for an extended time. A couple times I even got up after sitting for a long time and thought I had sprained my ankle! But the pain went away by walking around for a little while.

Sometimes at lunch I walk home to let my dog out for a little midday break. (Just because she can be in her kennel all day doesn’t mean she likes to, so I try to give her breaks as often as possible). When I plan to stay at work for lunch I try to pack something healthy. Often leftovers or a salad with some protein (chicken, shrimp, hard boiled egg, etc.). Sometimes I also continue a fast through lunch. I actually try to fast a full 24 hours once per week, from dinner one night, to dinner the following night.

Afternoon is when my fatigue tends to set in, so I really try to “Eat the Frog” and try to get the highest priority or most difficult stuff done early in the day when I have the most energy.

After work I usually head straight home. Often my energy stores are zapped for the day, which is why meal kits have come in so handy for me. Not having to think about what to make for dinner, or spend much time prepping ingredients is so helpful when I’m exhausted at the end of the day. Still, I also try to use evenings as time to build community and challenge myself intellectually by going to Bible study, book club or taking classes at the local community college.

Before bed I’ve started an oil pulling routine (more on this in a later blog post), which is also a great time to pop in some ear buds and do a guided meditation. I wash my face and use organic witch hazel toner and then aloe as my moisturizer. If I am having any joint pain I use topical CBD ointment and/or Max Freeze to help alleviate symptoms without needing to take an NSAID. (Though I do take aspirin or ibuprofen when needed, and per my doctor’s instructions, I always try to take the minimum effective dose – so if I can spare my kidneys and gut lining by not taking an NSAID for pain, then I will. NSAIDs help with symptoms of RA, but they don’t halt disease progression).

Then it’s off to bed by 10:00 pm so I can hopefully have a full 8-10 hours of sleep to be ready for the next day!

If you have RA, or another autoimmune disease, what is your day like?

Now that was my usual weekday, but Saturdays are my me days – check out the new vlog to see what a Saturday is like for me!