The high of good scan news are waning and I’m settling back in to the daily work of fighting cancer. Going to my appointments, monitoring the things that I’m at risk for, the boring stuff that makes cancer a job.

Today I spoke on a panel for a group of high school girls who are interested in health care careers. Two other survivors and I talked about our experiences and answered all of their questions. I really enjoy these experiences – I like telling my story and I like the way it helps future clinicians learn about what life is really like for a patient. Even though it’s rewarding, these events are draining. Inevitably people want to hear about the hardest parts, want you to relive the most intensely emotional moments. It’s a performance I have to put on and then recover from.

I am testing out a new medical device. I have a number of complaints about the one I normally use, but it was so hard to find one that worked at all that I stuck with it for more than a year once I found something that met the minimum requirements. With my recently increased energy I’ve decided to see if I can do better. It’s scary because the consequences of the device failing really suck, and also amazing because the model I am testing is a ton more comfortable that what I currently use.

That wraps up this week’s news. Hope you’re all having an excellent summer!

Last week started out tough, with having to wait for my scan results, but ended on such a high after getting great news. I noticed that it was really different for me to share the news digitally versus in person. I sincerely appreciated the outpouring of love here and on Instagram, but I felt pretty overwhelmed and numb in those conversations. I was able to see a number of friends this weekend and sharing with them face to face was much more emotional. It helped that time had passed and I was more able to process the information.

I am six weeks into working out with my trainer and I am noticing the effects more in daily life. It is easier to get up off the ground without using my hands – it used to be a struggle for my leg muscles but they’re clearly stronger now. I also notice it in my posture, which tends to be terrible. I am noticing my positioning more often and able to improve it for longer periods of time. These are the sorts of things that will make a difference for me in maintaining independence and mobility as long/much as possible so I’m really pleased to see these kinds of results.

I talked a big game about writing my morning pages last week, but as soon as the stress and fear surrounding my scan hit I stopped them and haven’t restarted. In those times of overwhelm I find myself frozen, and I avoid the kind of self-care that could help ease things. It feels too hard to feel any of those feelings so I try to feel nothing at all. It’s a habit I’m slowly trying to address and I am looking into taking a meditation course this fall that is specifically about these skills.

I’m ready to get back to my treatment this week and keep destroying more of this cancer.

It’s been another couple weeks since I posted, and I learned last week that my blood markers dropped yet again. These blood markers tend to move with the amount of cancer in my body so in theory they indicate that my treatment is effective. I had the scan that will confirm how things are going earlier this morning, so now I am hydrating and eating and hoping for good news.

This is my first update scan not at MD Anderson in almost 3 years. As I hoped, I had much less anxiety leading up to the scan without it being part of a trip and feeling like an event. I get the results on Thursday, so I suspect that the anxiety is going to hit between now and then. But I get to be with my family while I await the results, which definitely helps to mitigate the worry. And I don’t have to get the results and then drive home 3 hours.

Last weekend I went away for a sewing retreat and sewed a pair of jeans. When I booked the trip I picked a place just blocks away, unsure if I’d have the energy to make it to the shop, let alone get through a weekend of sewing. It’s a surprisingly physical hobby with lots of standing, bending, reaching, carrying. It took me a week to recover, but I got through the class, and am so grateful to be on a regimen that allowed me to do so. I left feeling inspired to sew more and have quite the queue on tap now!

Overall I feel like I am settling into being in a place where I can do more planning and have more direction. We were just surviving for so long, and now I want to take advantage of the chance to live. I have gotten back to doing morning pages, which is an exercise from the book The Artist’s Way. Writing these pages has always led me to my truest direction, including my husband. I am still waiting to see what they will bring and am excited to be in a place to carry it out.

Hello! I am feeling much better than last time I posted. It is feeling easier lately to focus on my own survivorship and not anyone else’s statistics.

I’ve gotten the dry skin variant of the rash my regimen can cause and it is tolerable but annoying. Multiple times a day I have something in my eye and it turns out to be a flake of my own skin. I haven’t found any moisturizers yet that last longer than a few hours and for part of the cycle my face is itchy. It has been worsening over my cycles so far; I’m hoping to find a stasis soon.

I heard last week that my blood markers are trending down, so my oncologist decided to do a fifth round of this chemo before my next scan. I don’t mind putting it off a couple weeks and enjoying feeling pretty good like I am now.

Sleep is the toughest symptom right now. I’m finding it really hard to get to sleep at a decent hour – part of it is me not going to bed and part is not falling asleep. This week I’m trying to make good choices in this arena and hoping I’ll feel so good I’ll want to keep it up.

Last week I was so eager to start my new chemo regimen until it snuck up on me and actually happened. It went much better than I expected, thankfully. I made it through without any allergic reaction and the aftermath of this regimen is easier on me than my old one. I was back to being awake a couple days earlier, and getting back two days of energy every two weeks is a big deal.

I have been able to be more active lately and I am enjoying it. My medications make me extra sun-sensitive so my giant sun hat and I are enjoying walks around the neighborhood. Last night my daughter and I met up with friends for an after dinner swim and it was so delightful, I want to do more of that this summer! I can feel the difference in my pain and energy levels when I am able to keep up even light exercise so I am trying to stay motivated to keep it up.

Speaking of my pain, it has been gone since chemo last week. This has happened before, we guess that the steroids I get before chemo also reduce the inflammation that is bugging me. I am still doing PT and I have a meeting with a local pain doctor next week, but I am hopeful that perhaps regular chemo steroids plus activity could keep things in check and I can avoid lots of pain meds or a steroid injection.

The combination of feeling good, having energy, and not being in pain – and still having a week until my next chemo – is very unfamiliar. I feel like I have been just barely keeping up since I started on Folfiri in December. To be able to take a breath, to have energy that I get to choose where to direct, I am finding it confusing. I feel frustrated that I am not getting things done, and also at a loss for what it is I am supposed to be accomplishing. I find goals hard these days – I like to set them and make plans to accomplish them and I don’t know how to amble towards them, accept non-linear progress towards them. I don’t know how much to push myself when all in isn’t an option. I guess I need to spend some time sitting and figuring out what it is I do want to work on this summer.

We got my new chemo regimen settled last week, but I haven’t had a chance to start it yet because the infusion center didn’t have a chair available for long enough until this Friday. I’ll be there for 7 hours, reading and napping and watching my way through. Part of why it will take so long is that most patients have an allergic reaction to my new drug the first time they take it. So they preload me with Benadryl, wait for it to kick in, start the drug, watch for anaphylaxis, give me more Beneadryl, wait for me to get better, and then start the drug up again, continuing until we get it all in. For most patients this only happens the first time, so fingers crossed. I am definitely not looking forward to it. I’ve never had an allergic reaction before and even though I know my nurses will be watching me closely, it is intimidating to know it will be coming.

Other than prepping for my new regimen this week has been about pain. My pain levels have been increasing for a while and have yet again reached the point where it’s constant and really interferes with my sleep. I am dealing by taking every pain med I can safely take together, timing things so I get the biggest help overnight when it hurts the most and I need sleep. It is frustrating to once again be in so much pain, especially when I don’t know what caused it, just that it’s related to my ongoing chronic pain in my ribs, and that I can just set it off and then spend months suffering. I’m back at PT which has historically been my most effective treatment, but that will take a while to kick in and fix things.

I have also been spending this week going through the resources I brought back from CancerCon. I knew that would be my most valuable asset from the trip, and it is good to go through it and find programs that I think could be helpful. One recurring theme is that there are opportunities to write and share more of my story in other venues and it’s something that is feeling really appealing right now. I’d like to be braver and go deeper into what is happening – not just report the highlights but really share more of the true and ugly. So I am pondering topics for different venues and trying to work up the courage to start contacting people.