Weekly Update #16

Y’all, this week has been so hard. This chemo can cause late-onset side effects and I have been flattened by them. What is most striking about them is that these reactions are hitting me as hard emotionally as they are physically. I want to stop this treatment, never do it again, and if that means limiting my life, so be it.

I know this is not my spirit. This is not how I respond to a challenge. And it’s not the biggest challenge I have faced recently – the pain I felt this summer was worse than the past few days have been. But here I am, entirely wrung out.

My radiation started this week and I cannot possibly do both at once, so I am pushing my next chemo dose out until New Year’s Eve. I don’t mind that timing – it feels right to end the year destroying some cancer. I’ll finish radiation next week, so I get the whole week of Christmas in between to rest and enjoy my little family.

I don’t know how I’ll ever get this chemo every other week when week 2 is so awful. I usually like to get unpleasant things out of the way and don’t mind gritting through to the finish. But waiting for me at the end of these doses is just more chemo. If you’ve ever offered before expect to hear from me soon, I’m going to be leaning hard on my community for sure.

Weekly Update #15

Finally I have started my new chemo regimen. I am so glad to have to underway, and am pleased that it is much less difficult than I feared. My previous regimen is considered to be fairly light, as chemo goes, so I don’t get any meds to tackle side effects as a matter of course; I have them on hand to take as needed. This one is known to be harder so I get pre-meds before the infusion starts, as well as a morning and evening anti-nausea drug. I’m doing a lot of sleeping and my appetite is low, but I am not feeling any nausea and I can be awake for a few hours.

My dad is here to help out this week and that has been incredibly helpful. He’s taking my daughter to and from school, cooking and cleaning up, running bedtime. My whole job is to take care of myself. It’s a real relief to be able to offload such a huge amount of work to someone else. It makes me think about the offers for help that I don’t take people up on. One reason is that childcare is where we could use the biggest help and my gal has a small circle of places she feels comfortable. The other is that it feels like a lot of work to organize help. Having a trusted family member come in and take over mitigates both those issues.

I asked a whole ago what you thought about hearing interviews from some of people in my life because, but I haven’t yet worked up the nerve yet to ask any of them. I’m still hoping that I do!

Finally, the link to my song is up! Ta-da! A couple neat details about it – the piano you hear is played by my daughter, and the line “I can bear the wait/weight” has my voice singing along with the professional. This song is so much more special and amazing than I dreamed and I am excited that now comes the sharing part.

Weekly Update #14

I missed my first update last week. I took a break from most electronics over the Thanksgiving break.

I still have not started my new chemo regimen. Twice I have gone into the clinic only to find out that it is not yet authorized and I have to wait for the insurance dance. It is incredibly frustrating to keep waiting. This new regimen feels like a wave that is about to crash over me, and I want to get out of its shadow and get it over with. I want to know how destructive it’s going to be, so I can plan how I’m going to deal with it.

It’s also stressing me out about my schedule. My dad is coming to help out next week, and I would really like to be getting treatment then. I currently have doses 2-4 scheduled in a way that works for my family, and I need dose 1 to happen next week to keep that schedule. I have never had issues with insurance denying treatments so I’m not worried about that, just tired of waiting for the process to run its course.

I have another thing that I cannot get off my mind. Since April I have been on an advisory board for a new clinic being created here, the Livestrong Cancer Institute. Their goal is to treat cancer in a whole new way, very patient centered and including social and emotional issues in their care. It is a thrilling project to be involved in and I’ve found it incredibly fulfilling. What is stressing me out is that they’ve invited me to be patient zero. They’re starting with GI cancer and an adolescent/young adult focus, so I am exactly their target audience. I would really love to give up the travel to Houston – it would be so great to have my husband be able to attend some appointments with me, have surgeries locally and have friends visit me, remove disruption from our lives from me being gone so often. And the care at the new cancer sounds so comforting. But . . . it means giving up the care team I’ve built up that I love. My new oncologist at MD Anderson makes me feel so safe and happy. I know the name of every person I interact with at my local oncologist – from the phlebotomists to the schedulers. Can a start up environment provide the level of care I need? I can’t commit myself to worse care. I keep making up my mind not to switch, and then I go to help out at Livestrong and I don’t feel able to let the question go. In a few weeks I’m going to go act as myself in a mock operations day, pretend to be a patient considering switching to Livestrong. I am hoping that being in the space, with the team, and acting it out will feel clarifying. Either I’ll feel at home or I’ll know that it’s not time to switch yet.

In good news, the song I have been working on in a pilot program is done and it’s incredible. As soon as it’s up on Soundcloud I’ll put up a link!

Weekly Update #13

Hello! This week was scan week so I come to you with updates.

Unfortunately, I did not see the results I hoped for. There was a bit of new cancer – a new spot in my lungs and a new spot on a rib – as well as growth of an existing spot. So next up we add a drug to my chemo regimen and do some radiation for the rib spot. The hope is that this will get me stable again and in 2 months I go back to maintenance.

I love my new doctor so much. I felt panicked when I first heard that there were new spots, but she did a great job of putting it into perspective. This is an incredibly small amount of disease progression for 9 months of maintenance chemo off and on. She doesn’t want to go in guns blazing forever, just knock this back and then let up. I feel like she cares so much about me and my quality of life.

That is not to say that I am psyched about these results. My blood marker was dropping and I felt so good going into this scan – it’s really frustrating that the information was inaccurate. And knowing that I do this heavier chemo and back to maintenance somehow clicked for me that, right, this is my life for the forseeable future. This isn’t even a marathon, because while they feel long they do eventually end and you get to rest. I’m not sure how long I’ll be able to keep up my spirits knowing that there’s no recovery period coming. My mental health plan is to keep taking it one day at a time and take opportunities to fill myself up when they arise.

I mentioned a few weeks ago that I had made a connection to visit a local colorectal cancer research lab. This week I joined the lab for their Thanksgiving potluck and then toured the facility. I used to be a biologist, so I loved getting to hear about their research and seeing where it happens. The lab leader is an oncologist and while she’s not officially my doctor, she wants to keep in touch about my treatment. I feel really fortunate to have this connection.

I’ll end by saying that I spent the afternoon helping a friend in need. I had planned on relaxing after this hectic week, but instead I showed up when a friend was hurting and I could help. And it felt really good. It’s so true that helping others is a great way to pick yourself up.

Weekly Update #12

It’s my last chemo before my next set of scans. Usually by this time I feel nutty and short-tempered and worried, but it’s not really getting to me this time. I think part of it is that I’ve been so busy that it feels like they snuck up on me. I often have an off week between chemo and my scans, so this time I’m distracted by treatment. But I also have a piece of information I don’t usually have; we’ve been tracking my blood marker at home. It’s not a direct measure of my cancer, but it is related and has been accurate for me in the past. I’ve been able to see that instead of climbing, this marker number is falling. It’s making it easier to believe that these scans will go well. For me the goal is: no new cancer and existing cancer is stable or smaller.

The nausea has been a little better this time around. I’ve been able to hydrate more and stay awake and accomplish some tasks. I don’t feel like I can really take credit for it, it seems like it just happens some weeks and not others.

I already have my next chemo scheduled for the week after and it is a bummer. It has only been 4 doses this fall but I am already ready for a break. I know I can take one whenever I want, but I would like to hold out for when I need one, not just when I am feeling grumpy about feeling bad.

Weekly Update #11

We scheduled ourselves a whirlwind fall and this past week was the middle of it. I started out feeling out of sorts after the day I referenced last week where I slept for 20 out of 24 hours. Immediately following that I got insomnia in addition to my regularly scheduled nausea. It felt like a different life than the week before being with some of the most important people in my life in one of my favorite places.

I’m always hungry during chemo because nausea prevents me from eating to satiety, and as soon as I’m able my body wants to make up for the missed calories. This week that desire to catch up never went away and I felt like a hunger monster. This cycle is one of the things I find so dizzying about biweekly chemo – my appetite always feeling like a reaction out of my control. My tongue is feeling more numb and my sense of taste is more affected by chemo lately so I find myself craving the big flavors of grease and salt and spice and sugar to compensate. I’d like to try approaching my nutrition more mindfully next cycle to see if it helps reduce the gustatory rollercoaster.

There are not a lot of cancer perks, but today was full of them. In the morning I was on a panel at a local high school, speaking to students interested in health care careers. I really enjoyed sharing my story. The kids asked me a lot of follow up questions about what it’s like, and I was glad to be able to honestly answer them. I made some great connections with my fellow panel members and left with invites to visit a colorectal cancer lab and to get in the loop for more opportunities to share my story. I went straight from there to a follow up session for my cancer song. We finally have the structure and lyrics settled. I recorded my vocal part in the chorus and was surprised by how much I liked my playback. I finished the day so grateful to have the time to pursue these kinds of opportunities. I already feel secure in my legacy and this is a rewarding addition to it.

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.