Yesterday was a tough day.
Someone I love has been in the hospital since Monday. These new precautions for hospitals, although keeping everyone safe, are also scary. Trust me when I tell you, having someone in an emergency room and not having anyone with them to advocate is scary. It’s been hard and scary and I’ve cried.
I also got tumor markers back.
It’s not good.
To top it off, my oncologist is sick and has no voice and is unable to talk. Probably because she has been so busy preparing for everything, and stress wreaks havoc on immune systems.
Her plan is to switch me to taxotere and cytoxin. She feels I tend to respond better with a doublet. However, I have not actually responded better to anything if you look at it. Every three of four months, therapy fails and cancer spreads more.
I now feel it in my liver. Want to know how scary it is to feel cancer in the liver? Trust me, you don’t.
I spent the entire day emailing my whole team. Donnie, my herbalist, my oncologist, my trusted advisors.
I’m concerned about starting another line of treatment Thursday for several reasons.
1-I just had a biopsy. Starting a new treatment Thursday is like throwing darts at the cancer blindfolded. The biopsy company called me and the good news is that they received my blood and in a week or two they said I’ll have results, not 5 weeks or so which i thought. The biopsy could tell us new mutations we could target, or if the cancer itself has mutated.
2-there is a worldwide pandemic going on. If you listen to the news, people going through cancer are among the highest risk. A new double chemo therapy will once again bring my immune system down. Should I trust in God that the cancer is slow moving and holding off on chemo for three months won’t give it time to grow everywhere, and will give me and my team to find better options based on the biopsy?
3-hospitals are preparing to be overwhelmed. I just read an article that cargo planes may be used to deliver treatments as borders close. Is going to a hospital even safe right now for someone like me? Will they be able to keep me on a steady schedule? Will the supply of chemo be continued or disrupted? You think your life has been challenging with this virus? My life is now in even more danger than before. How is this even possible?
4-I emailed Donnie. There is a four hour time difference. I’ll get his full response today, but Erin saw him briefly in passing and filled him in. He said I have a good life force, I’m not elderly, I’m on a good protocol, and should wait for the biopsy results. That I am in better shape than most under the circumstances. I sent him my lab work and today I will get a deeper answer after he sees them, as one of my liver tests came back high.
5- I emailed my herbalist. His response? “The decision should come from you and Rob. Since the chemo is not working and is wearing you down, so if they have nothing less toxic and carry more promise to offer you, then it is sensible to take my herbs for say a 3 months period to see if they can be helpful. I am confident the herbs will significantly improve your health but I really do not know how much it can stop the progression of your breast cancer., particularly now the cancer cells have survived so much chemo and have mutated to be much tougher to deal with.” It was not as confident as he sounded in Florida. He then emailed again after seeing my labs and said its obvious the chemo is not working because the breast cancer tumor marker is rising. He reiterated that taking a break from chemo and just using his herbs, even if they are not successful, will leave me stronger to start a new line of treatment in three months.
5- I messaged another friend who has become a sounding board and knows all of my team except my doctor. At this point, chemo has not been helping much and is damaging my body. The cancer has been mutating and changing with each treatment and getting stronger. It has never been attacked by my herbalists most powerful herbs. The goal is to stay as strong as I can for as long as I can. My herbalist has been helping women for dozens of years, and this friend has met many. So have I , at the last annie Appleseed conference.
That was my day yesterday. I was with my kids and also getting emails and updates about how to proceed in these unbelievable times with regard to school. People, please. Take it easy on criticism of teachers. Everyone left work Thursday with no idea we would be closed for weeks. Teachers are people too, and also dealing with the stress of these times. Now schools are taxed with coming up with plans on how to teach remotely, as well as feed communities…. in only a few days in high pressure times. Everyone is anxious and worried. No one knows when we will really come back. No one knows what will happen with regents and AP exams and testing. Please don’t add more stress to the pile. Read, have your kids write, limit the news they hear, exercise, tackle cleaning and organizing. They should definitely write in a journal, because when they have grandchildren, this will be their Pearl Harbor, or 9/11, but in a different kind of way. I hope they look back and remember how the world came together, neighbors looked out for each other, we flattened the curve and saved many lives, and they heard of or knew a kindergarten teacher who lived for many years after.
I did all the emailing while trying to keep calm in the face of my children being home with me. I was dealing with three crisis at once. My loved one in the hospital and limited information, the cancer results, and a pandemic. Seriously, God? I’ve got Jesus on my boat sleeping, and you just allowed my boat to go into the Bermuda Triangle.
Rob was at work trying to figure everything out as well. He is a small business owner. So let’s add that stress to the day. He’s got employees to care for, bills, jobs. And a wife who is texting updates from all of the specialists all day.
That was my Saint Patrick’s day. Everything always happens on holidays with me.
Three phrases have helped me over the last few years.
“Day by day”.
We have to take everything day by day and not look too far into the future. We never know what’s coming. Would you have believed a week ago that the word would be shutting down? Probably not. Get through each day, sometimes each hour, or each minute.
“I’ll be ok, no matter what.”
When rob and I got married, our phrase to each other was “no matter what”. Meaning we would love each other no matter what happens and stick it through. So I have added that to my self talk. I’ll be ok… no matter what.
I just say His name out loud. That alone gives me strength to go on.
My kids are scared. When I told them the chemo isn’t working, they got quiet. Maddie said, “You’ll keep going, right”. I said I’ll keep going. My hope is for a long time.
I also hope that teachers don’t assign too much work. It’s different to work all day in school than in home. Learning new material is hard. Teaching it to yourself is harder.
I’m struggling as a kindergarten teacher. So much of what we do is hands on. Explicit instruction. They need socialization and questions and play. I’ve been using my remind app and sending messages every day. I’m getting pictures back of my students as they do some of my suggestions. We are staying connected.
Tomorrow I go to see Dr Stopeck. I’m hoping she has her voice back. I’ll be alone with her, and have to call rob and have him conference in. Not having his physical presence when I have to make a life or death decision is hard.
Thank God I love my doctor as a person, and I could not imagine having to do this alone as a newly diagnosed stage four patient without years of trust between us behind me.
Still, the thing is, there is someone out there… actually, a lot of people out there..
That have it worse than me.
That have it worse than you.
Let’s stop complaining and be grateful.
Let’s stop complaining and find ways to get through by helping each other.
Jesus is still on my boat. I know I’m in the Bermuda Triangle and now there is a big storm coming. Everyone on the boat, (except Jesus of course), is worried. They’ve stocked the boat with plenty of toilet paper and water and canned goods, and now we wait.
Keep your eyes on Jesus. He may be sleeping.. but He is in the boat.
I don’t know what I’m going to do…
But I know this…
we will be ok, no matter what.
In Jesus’s name, amen.