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.
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.
Last week was a bit of a rollercoaster, luckily ending on a high note. As I have had to increase my levels of painkillers, I have been finding it more difficult to urinate. It’s a relatively common side effect and one that I was handling okay with various breathing and positioning techniques. On Wednesday, however, I realized that the entire day had passed without me ever fully emptying my bladder. I was afraid of getting into a very bad situation, so I called the nurse line at 10:30pm and they recommended going to the ER.
The ER visit ended up being quite an adventure. The doctors there were very worried about the combination of me being unable to empty my bladder plus the new nerve sensations just nearby in my butt cheek. They sent me for an MRI to see if there was a physical problem causing these issues. The MRI came back clear, but it was an excruciating experience. Laying on MRI tables always sets off the pain in my ribs, which tends to radiate around the left side of my body feeling like flames. For the first time ever I had to use my panic button and ask to be let out of the machine early because the pain was simply too much for me to bear for another second. I only had 4 minutes left but I couldn’t do it. I sobbed and maybe had a mini panic attack while walking around so the pain could subside. They gave me some IV morphine and between that and a break I was finally able to finish. After that the doctor agreed to give me a catheter and I thought we were done. He tried to convince me to be admitted so I could see a neurologist and a urologist. He said he didn’t think I needed emergency surgery, which I guess means it had been a concern of his at some point (?) and also that I may have the catheter permanently. I told him I would rather go home and set up the follow-up appointments myself. I was able to get in to see my oncology team that morning and they agreed that they have been keeping an eye on these issues and have a plan and were happy to remove the catheter for me, thank goodness. I spent the rest of the day catching up on rest.
I said that the week ended on a high note, and that is the knitting retreat that I went to on Friday. I was supposed to head over on Thursday but was waylaid by my medical drama. I was so pleased to be cleared to go on Friday morning. It was a weekend at a beautiful resort surrounded by some of the most lovely people. I’ve been going to this retreat for years, usually as a teacher, and have built some wonderful relationships over that time. I got so many tight hugs this year – I was in bad shape when I attended last year and there was so much relief that I am doing better now. It felt really great to be surrounded by that kind of love and affection. I was also really honored that I got to choose one of the charities that the event raised money for – Wonders + Worries, which has provided emotional care for my daughter throughout my illness and is a very special organization. I left feeling so full of love and inspiration and gratitude.
This week I start back up on my oral chemo, so it was really great to fortify myself before I get to the part where I feel worse again. I will have lots of warm memories to surround myself in when I need a pick-me-up this week.
Last week I was still really exhausted from my oral chemo. I am enjoying finally getting some energy back this week and knowing I have another week before it all starts up again. We went to a local Renaissance Faire this weekend and I was able to walk around outside for a 7 hour day. That’s a really long day for me and I made it without a map or mobility aid, it felt good to feel so good.
I had an interesting chat with my doctor yesterday about a paper she read recently. There is some evidence that patients like me who develop a specific mutation that makes us resistant to one of the drugs in my most recent infusion combo, that it can go away over time. She is going to do some more research, it means that that chemo may be available to me again as an option and we might do that instead of moving to a clinical trial next. This sounds kind of too good to be true, but I am definitely crossing my fingers!
I have a new symptom and it is making me want to crawl out of my skin. I have mentioned before that I have an area on one side of my butt and extending down the back of my leg that is numb. Something has changed and now that nerve is instead giving feedback all the time like my muscles are either contracting really hard or being stretched out. I haven’t found anything that helps it, just ways to distract myself from it. It’s not painful, it’s just an incredibly unpleasant sensation and it is so hard to ignore when it flares up.
I have the next doses of my new drug in hand – after I called the pharmacy to schedule delivery I realized my heart was pounding, so clearly my body has some memory of how stressful it was to get the last batch. For now I am trying to figure out the rhythm of when are rest days and when are more reliable work days.