Weekly Update #6

It’s been a week since my visit to MD Anderson revealed so much good news. I can feel the joy from everyone around me, but I’m feeling unmoved by it. Part of it is that while I am so happy to have years and years ahead of me, they’re going to be years and years in this pattern of chemo every other week and a scan every few months. I want so badly to be positive, but I’m not excited about the treatment plan that I have for the foreseeable future. I know that I should appreciate that I defy every statistic, but right now I’m sad to be the one who ended up in this situation.

As I have been struggling in the weeks before and after my scan, I’ve noticed that I’ve been avoiding my self-care. I am not talking self-care like treating myself to a new tube of lipstick. I am talking self-care like getting outside for a walk and drinking enough water and slowing down and dealing with my swirl of emotions. I have been actively leaning away from it towards goals. Goals like reading a certain number of books in a year or knitting a sweater by an arbitrary deadline. I like goals. I am a planner and a high achiever. Goals makes me feel good, I like working towards something. And it is hard for me to admit that I can’t have as many goals as I would like. It feels like I must be doing great if I have time to dream about getting things done – I said so just a few weeks ago. And these goals aren’t bad, they are all hobbies that bring me joy. But when they’re used as a distraction rather than a comfort I know I’m off balance and need to readjust.

I guess I am upset about that, too. I want to be able to frivolously try to finish a sweater by Rhinebeck, not leave hours a day available for the sitting and feeling that I have to do. I think I am onto the right start with my emotions. It’s time for some more anger and frustration and disappointment. I like to be serenely accepting always, but that’s not realistic. I get to feel about the news of the past few months and it’s time to do so.

Weekly Update #5

Well, it’s about time for some good news! I got home yesterday from a great trip to see my doctors.

First up, I met with my new medical oncologist to discuss the results of a new scan. And it was all good! There’s no new cancer and the existing spots were either stable or smaller. I’ve only had 2 doses of chemo between the scans, so I’m pretty excited about that. In addition to loving the scan news, I love my new doctor. She is warm and an excellent communicator and made it clear she will always be honest with me. I asked her about my outlook and she is incredibly hopeful. She feels like I have had a relatively small amount of treatment over 3 years and just to be where I am is incredible. We have a lot of options still available to us. She also said that there’s no statistic that applies to me, I keep defying the odds, and she is optimistic.

It is so overwhelming to hear good news. It’s a little scary to hope, opening myself back up to have those hopes dashed. I’m slowly processing the news and hoping as the feelings really hit me I’ll feel more comfortable in them.

The other good news from this visit is that I had a pain procedure, a nerve block. While my pain is super low now, it’s partially because I don’t do any things that would make it hurt, and there are plenty of things I’d love to do that are on that list. The biggest is that I can only lay on my back, which is not a comfortable sleeping position for me. I’ve resisted this procedure because in theory they only last 3 months and I’m loathe to sign up for a procedure I need 4x a year for the rest of my life. But I really miss laying down to sleep and relaxing my body. So we’ll see if this improves my quality of life.

So it’s back to chemo every other week and a scan in a couple months. The next couple months are super busy in our personal lives, so fingers crossed that I feel well enough during this treatment period to enjoy it all!

Weekly update #4

It is belated but this week’s update is here.

This is another week of anxiety. It is nearly time for my next scan and that always gives me a big spike. At first I was worried about whether the scan would be approved in time. In July when I last had this kind of scan it took many weeks of calls and waiting to make it happen; I only knew for sure that it was on an hour before it was time to start my drive. But the same day that worry started I got the letter from my insurance that it had been approved.

After that was resolved I wondered why I was still so riled up. Was it just a habit at this point? Then today I said it out loud – I left my doctor as I got the news from the last scan that my cancer changed from curable to treatable. I haven’t yet had a conversation with my primary doctor about the plan. And I finally get to ask those questions – what are we doing for the rest of this year and what are the possibilities for the longer term? Of course I’m full of stress and worries. I have a rough idea of what is likely from discussions with nurses and other doctors but it will be big to have an official discussion.

I started a scary and exciting project today. I’m working with Austin Classical Guitar to write a song about my cancer. They have a similar program for pregnant moms to write lullabies for their babies, and I’m the trial run for introducing this program at a new cancer center in town. I was nervous when I went to the first meeting but it was so productive and thrilling. I’m ruminating for the next week and then we get to start working on the music.

And of course, it’s mid-September so the crafting instincts have kicked in. Hoping to knock out a couple big projects in the next month. It’s nice to feel well enough to set and expect to make progress on non-essential goals.

Weekly Update #3

It’s another chemo week and this one is a stark contrast to last time. I’m able to stay awake all day, eat and drink pretty normally and I even went to the gym today and walked 30 minutes on a treadmill. I want to feel relief, reassurance that chemo weeks don’t have to flatten me, but instead my body is tight with fear and anxiety. I remember the suffering and I don’t want to do it again.

I have the ability to grit my way through discomfort and pain and fear and uncertainty. And I think I do it by ignoring all the screaming inside me, silencing it so I can do the awful things I have to do. It’s when it is time to face them again that the traumatic feelings flood me.

Every night that I am hooked up to the chemo pump I get in bed and spend time thanking the pump and imagining the chemo flowing through my body destroying cancer cells. Lately it has been impossible for me to engage in this meditation and I realized last night that it is because I am afraid. I am afraid of the pain in this body and my mind is protecting itself from sinking in and experiencing it. There was no pain in my body last night, but the memory is there and touching it hurts just as much.

I know I have to feel these feelings eventually. I want to. What I keep forgetting is that of course it will be hard to process these experiences and it is okay that I need time to do so. I feel ashamed of my fear, lazy that I don’t jump right in and contribute to my current abilities. So I guess for the next week I will keep reminding myself that it is okay to heal and try to be brave enough to do so.