What a strange world we are living in. At least I hope it’s strange for you and it’s different for you, if it’s not, you probably aren’t doing your part to keep people like me safe. Does that sound judgey? I’ll explain:

With Covid-19 on the rise each day in the US, and a Pandemic being declared we are no longer watching this happen to a country far away. It is happening here. This means we’re all in it and our own individual decisions determine how many lives will be lost. I honestly don’t care if you think this is hysteria or “just the flu” or you deem yourself, your family or your friends “healthy”. That is not the point and is irrelevant.

Simply put, while you may be healthy, if you do get covid-19 and get just mildly ill, or have no symptoms at all, the person you pass it on may not be so lucky. There are so many people who are immunocompromised. People like me who get chemo, have an autoimmune disease, people with diabetes or lung disease. People that are on medications that lower their immune system. Not all health issues are obvious. People that are older like many of my peer’s parents. They may be healthy but their immune systems just by virtue of their age puts them at significant risk. Risk of death.

I have done all I can do which is put myself in quarantine away from my family until they have all been quarantined long enough that we are sure none of them are sick. I have moved out luckily to just across the street where my very sweet neighbors are letting me stay above their garage. I am grateful I have this option, many others do not.

Listen people, this is hard. My own husband who is one of the most level headed and do the right thing guys I know hadn’t even understood the measures needed to protect the vulnerable until last night.

Parents, what if your child just came home from college and then you took them to see your parents who are in their 70s or 80s. How can you be sure you or your kid doesn’t have a mild form of the virus and now you’ve infected your older parent who may get gravely ill? You can’t be sure.

College kids and kids that are in high school with a driver’s license. I get it, you’ve been sent home from school, away from your friends. For some of you it’s spring break time so why not hang with your friends? Who cares about covid-19, it’s not going to kill you. It’s actually not about you, it’s about the other people you come into contact with that may be severely impacted. Go home. Be with your family. Take a hiatus from your social network and trust it will be there when it’s safe to go back to life as we know it. If you are climbing the walls, have a friend over and hang in the back yard 10 feet apart. Go for a bike ride with a friend and don’t get too close to each other or touch one another. You have lots of ways to stay in touch. Dig into a different way of life for a while and see what comes out of it. It may surprise you. Read a book for pleasure, learn how to bake bread, shoot some hoops in the driveway, go for a run, sleep in! Even if you’re bored off your ass, you hate every second of it and you don’t want to do it, do it anyway. It’s the right thing to do.

Adults – You deserve a trip, you deserve a spring break so you’ll drive to where people are still gathering so you can have the vacation you deserve. Or you fly. How does that help us all? Why are you more deserving of a break than the people that are already at home having less interaction? What if a few people in your group get sick with the virus? What if a hospital stay is required? If enough people think this way, there will be overcrowding in the hospitals in no time. Now I’ll loop this into how this is selfish.

I rely on being able to get drugs to keep me alive. Without them, I can’t survive. Right now, in this moment I have a decision to make. Stay on chemo which hammers my immune system and makes me even more susceptible to this virus (and anything else for that matter) or change my treatment and do a targeted ablation called RFR. This requires me to schedule an outpatient procedure in a hospital setting. It also requires me to allow enough time to get this set up. While people are hooping it up on spring break or getting together in groups at bars, restaurants etc, germs are being shared and a few weeks from now, when I’m ready to do this outpatient procedure, the hospitals are maxed out with sick covid-19 people and my procedure gets harder to schedule and a lot risker. All because you, you lucky non-compromised person needed to see your friends, needed a vacation, needed to entertain your kids, needed to think about yourself.

A quote I saw yesterday summed it up well for me.

Your grandparents were asked to go to war
You are being asked to sit on the couch

Let’s protect the vulnerable, let’s protect our friends and family who are healthcare providers. Remember, our healthcare workers are on the front lines. If we reduce the amount of cases we help minimize the exposure these men and woman have. They are already short on masks, gloves and hand sanitizers. Theft has been rampant of this items in all medical settings. My oncology PA and dear friend has ONE mask and was told not to lose it. They have families and friends that love them a lot and they don’t get to stay home from work because they are trained to do a job the rest of us can’t.

I know businesses and personal income are at stake but it will be an even bigger issue if we are out and about giving more chances for spread. This will all last longer.

Take walks, garden, cook, write letters, do a Tik Tok with your kids, tackle a project you’ve put off, play board games or poker with your family, do a puzzle, get fit in your living room, call an older friend or relative and catch up, take up meditation, noodle on an instrument, visit at a safe distance with neighbors, settle into slow, if you’re an extrovert, tap into how introverts like things and have grace for its merits. If you feel the slightest bit off stay away from others and monitor your symptoms. Kids are going to be bored and annoying. Those who live alone will feel isolated. This isn’t fun. Nobody WANTS to do this but most of us are in a position where we have the choice. Many people have greater sacrifices to make because not working means not having enough money to live.

If you do have to go out:

Wash your hands like crazy whenever you can for 20 seconds. Sing Happy Birthday twice.

Keep 10 feet away from others

Don’t hug people or shake hands

Do what you need to do with minimal contact and then go back home

Please do the right thing. I think we would all feel best if we were more careful than we needed to be instead of wishing we had been more careful.

This is from the doctor in Austin, TX  my mother, husband and PA go to:

Stay safe everyone. There’s plenty of fun to be had!

xoxo Hilary

Here’s my health update:

This past year I went off Gemzar/Cisplatin, the chemo combination I have done each time I have been on chemo since diagnosis, to try a targeted drug for the IDH1 mutation I have. The drug, Tibsovo, is an oral drug that I got free from the drug manufacturer, Aigos. I was excited to try this drug because while it had no curative potential, it did have the potential to keep me stable, like chemo but with no side effects for maybe as long as two years. Unfortunately, it didn’t work. I felt great on the drug with zero side effects but within a couple of weeks on the drug, my cancer grew. This was a big disappointment as I had really hoped to get a good long break from chemo and live normally for a while. I did get a chemo break for a little more than 2 months.

I went back on chemo in early December and now as I’ve shared above, I have a decision to make about what I do next for treatment. I’ll keep you posted.