Weekly Update#64

This is my first update since I started self-isolating two weeks ago, which happened to coincide with the two weeks of my chemo cycle where I take the medicine.

It has been really hard to have my household at home to see what my experience looks like; normally I get to do lots of my resting while they are at work and school and save the best of me for time with them. The past two days we have been starting homeschool for my daughter, but have also been the days with the most fatigue and I feel so much guilt for letting down both my husband and my daughter. We all have extra stress going on and I wish I could be relieving some in our household, not adding more.

Another way I wish I was helpful and feel like I am letting people down is sewing masks for my local cancer clinic. I contacted my oncologist and said I’d be happy to step up if there was a need, which she immediately responded that there was. I thought I would finish these on Friday of last week and they’d be able to use them all this week, but instead it’s Tuesday and I still have so much sewing to do plus I need to launder them before dropping them off. I know they’ll help whenever they arrive but it’s so frustrating to lack the energy to finish this task that is so important to me.

The active treatment during a pandemic part of my life is going surprisingly well. I am so glad to be on oral chemo right now, which I take entirely at home, and the pharmacy even ships the medicine to me. I can do my check ups via telehealth, which has been going really smoothly. I only need to leave my house for blood work biweekly, which I am doing at a low-traffic lab location and following disinfecting protocol afterwards. I will have a scan this week or next which will also require me to leave the house.

My pain has finally been trending down, which is great news. I am glad to be on way fewer pain meds. It also is a hopeful sign (though no guarantee) that my new chemo regimen is effective – much of my pain is from cancer so often less cancer means less pain. Again, I have a scan soon so we’ll know one way or another. I don’t love this treatment overall, but for a global pandemic it is pretty optimal so I would like to be able to stay on it.

I hope you’re all doing okay, friends. If you want to vent about your hard times in the comments I will read and send you so much love. I am having my own struggles, but still have plenty of empathy left for y’all.

Not Like This

Last night I got the call from my oncologist – it is time for me and my family to go into self-isolation. I need to leave the house as little as possible, wear protective gear when I do, and disinfect when I get home. We should pull my daughter from school, whether it is closed or not. My husband should work from home if possible. It is scary and disappointing and inconvenient, but the primary emotion it brings up is one I haven’t accessed much during my cancer – anger.

I am angry at the idea that I have suffered through 4.5 years of cancer treatment to be threatened by a virus that is a mild cold for most. I am angry that it didn’t need to become a pandemic, but our global governments have mismanaged it into one. I am angry that my small joys are being stricken from me – going to see movies, midday naps while my daughter is at school, volunteer work at my cancer center. I have plenty of books and yarn and TV to fill the hours, but it is demoralizing to have no end in sight. And I think I am most angry that I am not even immunocompromised. These are all the right steps to take because the risk of things going bad for me is too high, and it shatters my illusion that I can live like a healthy person. I can’t count on good hygiene to let me do the things that are important to me.

I feel like I should close on a positive note, with a list of all the businesses and people who have been so generous and found solutions to keep some normality during this season. But I’m not ready to go let go of my anger and move to appreciation yet. Maybe by my normal update next week.