The State of Affairs v.1.
I've had lots of questions about the specifics of my treatment, the side effects I'm experiencing, and how life is going generally, so I thought I'd start giving periodic updates on all that here.
This is how my treatment works: Each "round" is three weeks long - and we are planning to do six. Days 1-7 are the chemo days. For each of those days, I take oral chemotherapy at home twice a day. Its a little crazy - I can't handle the pills without gloves, but I ingest them. I cant get my head around that.
On day 3 - which is always a Thursday - I go into Massey for infusion chemotherapy. This involves my sitting in a recliner for about 5-6 hours while they push four separate chemo drugs through my port. Before they push the chemo, they push a bunch of steroids, anti-nausea, anti-fever, and anti-anxiety medications, so I sleep through the first bit of the infusion.
Throughout chemo week, I take Zofran (an anti-nausea medicine) every six hours around the clock. I have a backup anti-nausea medicine I can take if things get too bad, along with medications to help manage joint and bone pain. Plus medications to try to manage symptoms of menopause, medications to counteract the chance of constipation from the anti-nausea medications, and thyroid medication. I'm also still giving myself twice daily injections of blood thinners, so chemo week involves lots of alarms set on my phone so everything gets taken when its supposed to. Its a little stressful and I feel like I'm tethered to an alarm clock constantly - because, in reality, I am.
Days 15-21 are "rest and recovery" days. I go into Massey three times for blood work during these days and once for a physical exam. As long as my blood work continues to show that it is safe to start a new chemo round every three weeks, we will stay on this schedule and hopefully finish the last cycle at the end of July.
By far, my worst side effects so far have been loss of appetite and nausea. I've lost more than 20 pounds in the last month and now, even a week out from chemo week, I find myself struggling with nausea at least once a day. Very few foods sound appealing to me. Chemo can make things taste strange, but for me so far the only things that have been really affected are water and vegetables - both send my stomach reeling. I'm trying to figure out how best to stay hydrated when I cant keep water down. Its been interesting. I'm being to encouraged to eat whatever I am possibly able to get down - regardless of how "healthy" it is - my team is getting worried about the weight loss. In truth, so am I.
My other side effects include trouble sleeping, joint and bone pain in my knees, ankles, and toes, light headedness, and headaches. I haven't lost my hair yet, but they say its coming after my next round of chemo. I'm not ready.
The further out from surgery I get, the easier it is to go about my day-to-day. Or at least it feels that way. In reality, I move very slow right now and I still need a nap in the afternoon. I spend much of my time at my favorite coffee shop, reading, writing, and managing various aspects of my healing (I'm incorporating a lot of things other than traditional Western medicine, which I'll share with you all in another post). While I am hoping to start working [very] part-time again soon, I am focusing on using this time during the six rounds of chemo to focus on my emotional and spiritual health and my recovery. Its a gift in our society to be given time to focus on those things, and I don't intend to squander it.
Things continue to be difficult emotionally. I cry daily. Multiple times a day. Mornings and evenings are the hardest, but I have been blessed with friends who are willing to just be in the same place with me, which helps more than I think they know.
It really is one day at a time over here right now. As I said a few days ago, sometimes even that feels like too much and I have to focus on the present hour or minute. When people ask me lately what they can do to help, the only honest answer I can provide is that I don't know. Because I don't. My needs seem to change with the winds and I can't predict them any better than anyone else can. Its not uncommon for my sisters to get a text from me asking if they can stop by to hug me or spend the night at the last minute. I just can't plan ahead. Everything feels immediate.
The one certainty I have right now is that nothing will look the same when this is over. I don't know yet what that new landscape will look like. I don't know what God is calling me to. But I do know there is something on the other side of all this.
The trick will be getting there.