Weekly Update #10

I’m late catching up because I slept for about 20 hours yesterday. I woke up nauseous and took an anti-nausea pill. It knocked me out so hard I was late picking up my daughter from school. After getting her home I kept sleeping until morning, save for being moved from couch to bed by my husband. I had forgotten why I avoid that medicine; I’m going to write a note on the bottle so I don’t forget again! Now I’m nervous to try any other anti-nausea pills in my arsenal because I don’t want a repeat.

I’m sure it didn’t help that I was tired going into yesterday. Over the weekend I traveled to upstate NY for a sheep and wool festival. It was far more activity than I usually do. I was pleased with how good I felt and how long I lasted wandering around the grounds. I had so much fun seeing friends from all over the world. It was invigorating.

I’m still sleepy and nauseous today so I am not going to get any more out today. Until next week!

Weekly Update #9

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This week the kittens knocked over the box that contains my medical records from years past. Here’s 2015-2017 in chronological order from top to bottom (2018 was spared, luckily). I expected the process to bring up a lot of emotions; I tried to only look at dates to ignore the rest of the page to protect myself. When I did read something and it made me try to remember that visit or procedure I was just surprised by how long ago those things occurred, not upset by them. It is weird to see these tangible measures of the past few years.

I invited a discussion on Instagram this week about fatigue vs laziness. It ended up being a reminder of how far removed I am from the life of a healthy person. Lots of people talked about how they opt out of busy-ness as status or feeling like productivity is a measure of their worth. I remember having those kinds of thoughts, too, when I was healthy. For me the prompting moment was that I didn’t want to walk several rooms away to retrieve an item for my to do list, and I thought of myself as lazy. I was only a week out from a chemo that made me extra tired and had just finished a weekend of solo parenting. My chemo doses are scheduled two weeks apart because the drugs are still having effects on my body through that second week. I long ago opted out of nearly every optional obligation, so I was feeling lazy for not having the energy to do basic necessary tasks on a day when my fatigue was high. It made me realize how much I expect these off weeks to be (my version of) productive and that I don’t bring the generosity I give myself during treatment to these off times. Even though logically I know I shouldn’t expect to be recovered, I want to be and find myself frustrated when my body needs more than I want to give. I truly appreciate everyone who commented; I did not ask the discussion be restricted to those who know chronic illness. But it was one of those moments that makes illness isolating. My healthy peers truly can’t know what this experience is like.

This weekend is one of my favorite of the year – the New York Sheep and Wool festival, also known as Rhinebeck. I grew up in upstate NY and being there is homecoming to my senses. I wear all my favorite woolens and eat beloved childhood foods and visit with my amazing fiber community and do a little shopping, too. I am looking forward to letting my soul bask in the moments.

Weekly Update #8

Let’s start with this week’s terrible doctor visit. I had a follow up with my pain doctor yesterday, to see how I was doing after the nerve block procedure they did a few weeks ago. During the follow up the fellow kept trying to argue that my pain was improved by my procedure and I kept telling him that no, it wasn’t. My ribs feel better because of radiation. I could get through the day without pain because of my meds. I got 1 new sleeping position, but I also got new pain from the procedure that makes it hurt to lay on my back – which was previously my only comfortable laying down position. The new back pain seems to be a muscle spasm so massage should take care of that. Next up he diagnosed me with carpal tunnel, which I had just noticed was an issue a few days before. When I asked for a treatment plan he told me to look up carpal tunnel relief on the internet. Luckily I have some other resources to figure out the carpal tunnel. And this terrible appointment just joins the long list of them.

In better news, I turned 35 on Saturday and it was a really lovely birthday. I had a lot of snuggly family time, and the gifts from family and friends made me feel so seen and loved. I’m still in a really emotional place, as I have been sharing here lately, and not in the mood for a big celebration where I would have to fake smiles. Quiet and intimate was exactly what I wanted this year.

The chemo is going okay this week. I’m more nauseous than usual. Even though I didn’t do the driving for my 6 hour trip for the terrible appointment it must have tired me out because I slept 12 hours last night. Oh, and I was able to go on a 2.5 mile walk on Monday! I didn’t have time yesterday but I am hoping to get in another walk today. They make me feel so good and are a great place to work through the big pile of feelings inside me.

I leave you with a question. I have met so many amazing people during these years – the eternally cheerful parking garage guy and the volunteer masseuse I talk mysteries with and the chemo nurse who manages to connect with every patient. I am pondering doing an interview series with these folks. Would you be interested in that? Let me know!

Sweaty Thoughts

Coming home sweaty from an outside workout always makes me want to write. It has been a very long time since I’ve been able to have this sensation. Exercise is part of how I got diagnosed – I had a pain in my tailbone and I thought it was from working out too hard. Through trying to address it I ended up at a GI and had the colonoscopy that revealed my cancer.

I tried to hold onto exercise as long as I could. During my first phase of treatment (daily radiation and oral chemo) I kept up my running schedule. I lasted two weeks before the treatment irritated my nerves and led to sciatica that sidelined me for the rest of that phase.

After my first surgery, I waited until I got the go-ahead from my doctor and immediately got on the treadmill. And then I mentioned it to a nurse who informed me that technically I was released for exercise but here were the risks . . . I immediately stopped and waited to heal further.

Finally, 6 months later I was in remission, fully healed from my next surgery and back in my running shoes.  And then we found out my cancer was back and I had my most intense surgery yet and had to heal for another six months.

Back in remission, I joined a class at the YMCA for cancer survivors, to help get them back into exercise. The 12 week program was amazing and I was back to not just cardio but weight-lifting, too. Then the back pain hit and we found out my cancer was back again again. Surgery, healing, and this time no clean scan followed.

I went back to chemo, and I still tried to walk occasionally. I had started daily walks with a neighbor while healing from the latest surgery and we tried to keep them up sporadically after I went back to work. But then another chemo side effect hit, another loss of mobility. Another surgery, more major muscle groups to heal.

That brings us to 2018. This was the year that I developed chronic pain and saw my mobility slowly decline. By August I couldn’t walk a whole block; it was too painful. Radiation relieved that pain and restored my mobility.

So here I am now. Trying yet again, knowing that it may be temporary. It’s not always easy to motivate myself to get out everyday. The fatigue makes it seem so difficult, it is like depression in that it tries to keep you from the activities that diminish it. Today looking back at how I have gone back to exercise over and over makes me feel proud of myself. And it makes me want to appreciate it while I have it. And I’ll tell you a secret: every time I go out for a long walk, my body wishes it was running, and I’m striving to get that back.

Weekly Update #7

When will I remember that I feel worst when I hide the unsayable thoughts inside me? They are never unsayable. And I always feel better when I share them. That’s what this past week has been about. After posting here and sharing with some friends, I feel like a fog has lifted. I still have processing to do, but I want to exercise and eat food with nutrients and practice good sleep hygiene and all the self-care that helps me heal. I am helping out more around the house which feels really good.

I have had a difficult relationship with productivity ever since I got sick. I cannot perform at my previous level on any front, and I don’t want to hold myself to unrealistic standards and feel like a disappointment. But I feel adrift when I have no responsibilities at all. It is hard to negotiate each day to find what feels like a reasonable amount to try to accomplish. And to forgive myself if I don’t reach it. When I am feeling overwhelmed with feelings I give myself permission for my only job to be to get to the end of the day. And unfortunately some days that is a realistic goal. But not as often as I set it. I know this is part of how I end up in the fog and fill up with unsayable thoughts. I guess I can start by trying to share them more. I keep them in to protect myself from other people’s reactions; this is heavy stuff that is out of sync with my peers’ lives and we live in a culture that is bad at grief. I guess that’s something I can do, help to make grief a topic that we talk about by sharing mine.