How are my fellow warriors? How are you guys dealing with this virus, and what precautions are you taking for yourself and loved ones during this time?
For us personally, my family has “doomsday” prepped our home for at least 2 months worth of food and supplies. My parents are 60+, and of course we have Ryan here. Technically his doctor said he is not immune compromised, but we are treating it that way. If our state, or country shuts down we will be prepared and not have to go out and possibly risk contamination. We will be going to GBMC hospital today for his infusion. They called us days ago letting us know their protocol that is in place. Only one person can go back with him. Can’t switch out. (We never do, it’s always just us) and we both have to be screened before going into the infusion room.
I would love to hear from everyone, I know we are all from different parts of the country. Maryland has taken extensive measures. No school for two weeks, no gatherings over 50 people, court systems are shut down, stores are empty of everyday essentials. I told Ryan to stay indoors as much as he possibly can. Avoid touching anything. I have hand sanitizer in my purse so I can lather him up if he does.
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kellyOd
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Here in California things are changing hour to hour. In San Francisco almost 7 million people are being asked to shelter in place, only being allowed to come out for groceries. In many counties my county: Orange County included. Malls, bars, theatres, restaurants (open only for take out), schools, courts, gyms, Disneyland, all theme parks, are all closed, people are working from home. All people 65 and over or immunosuppressed are being asked to self quarantine. Most people are trying to self quarantine themselves and their families. Long Long lines for cleaning supplies, and Food at stores everyday which are running out of everything within the first hour. People are absolutely panic buying and hoarding here. It’s aweful. I really wish they would put everyone in lockdown so we could just guarantee everyone would stay home and stay safe so we could get through this as a country all at once.
The unknown is scary. I pray everyone stays safe, and can calm down and relax a little.
My City of Irvine is awesome we have a page where if there is something someone needs someone will deliver it to them for free no questions asked. I went and packed over 7,000 boxes this weekend to be delivered to food banks, which will then go to pantry’s and then distributed to those in need. These boxes have enough food, drink & coffee for 2 weeks for 2 people. Some will be delivered to peoples doors who cannot get out. It is really amazing what good we can all do if we come together.
That sounds like what Maryland is doing currently. I’m glad you and your community have ties to help each other out! That’s what it’s all about. We have enough supplies for us for a little over a month. We are all going to self quarantine for safety. Try and stop this from peaking. Need to keep Ryan safe and my parents safe!
Delivering boxes to those who can’t get anything is truly amazing. I am so happy that kind of kindness still exists in times like these. ❤️
Hi, hoping to hear updates from you guys, since last was 3 days. Healy, safety, access to cancer care, mood?
Missy?
I’m hunkered down with my mom, desperately waiting for a Fedex delivery of braftovi mektovi and hoping 1) it works and 2) she doesn’t need any medical care because we are cut off from NYC and have no one reliable in eastern PA (philly is just as difficult as NY, but maybe not).
Ipi/Nivo failed - hoping to rechallenge targeted therapy 🙏🏽
good luck to your mom with the Braftovi/ Mektovi combo.
I still have bottles of this in my house, unopened and unused. Turns out there is no where to donate these super expensive medications except to get appropriately destroyed at a pharmacy or through the fire department/ police station drug take-back locations (who will get it destroyed.)
Are you hunkered down in NYC or in PA with your mom?
Hi Missy. After my son passed we had many unopened bottles of very expensive meds. I asked his doc how to get it to patients who had trouble paying for it. She said there was no official way but if I sent them to her she would see that it went to good use. I boxed it up and mailed it to her. I am assuming she followed through. Certainly made me feel good. Just a thought.
Hope you guys are doing well. We are taking this situation day by day. My mom is nervous since she falls in the immunocompromised category. As more news came to light about the virus, I was urged to stay home by my moms cancer team. My job has not closed its doors yet. Still pretty much buisness as usual with new options for customers like curbside pick up. I work at a craft store. Many people were still coming in when I last worked. Many people that didn't seem to take this seriously. I heard "oh you're young, you will be fine" too many times, while customers kept coming within a few inches of me. After that I decided to take a leave of absence. Yes, I may be fine...but my mom probably wouldn't be. I filed for unemployment under the new pandemic regulations Ohio has put into place. Still have yet to hear back, but for now we are fine and will figure out the money situation as time goes on. I rather worry about money than my mom fighting for her life.
If I do have to leave to get her meds, food etc. I make sure to wipe off anything I bring into the house. I plan to knit more and enjoy this time with my mom, calling friends and family often to check in on them. I've also volunteered to get things for a few of my neighbors that are 60+ and have cancer and heart conditions.
Just trying to lay low and be grateful that we live in an era where we can be stuck inside with Netflix and facetime to pass the time.
I have several friends relying on access to craft stores to get tight woven cotten, flannel, and elastic to sew last resort face masks.
I'm glad you have been able to take steps to be with your mom, and that you have creative outlets to help your stress management.
For those sewing skilled folks, here is the site with instructions and a pattern for making a mask at home:
While fabric masks are not to be used in the care of COVID-19 patients, according to the CDC, fabric masks are a crisis response option when other supplies have been exhausted. Fabric masks can also be helpful in other areas of patient care as supplies of PPE are depleted.
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