Weekly Post #71

Last week I had a CT scan and a follow-up with my oncologist to go over the results. Unfortunately, they were not what we wanted to hear – this line of treatment isn’t keeping me stable and it is time to move onto something else. The amount of progression I had isn’t much – there’s nothing new, lots of spots stayed the same size, and the ones that did grow didn’t have huge amounts of growth. But it’s enough that it’s clearly time to try the next chemo.

Also unfortunately, the next chemo is the end of the line. It is the last approved medicine for metastatic colorectal cancer. After this my options will be clinical trials and going back onto medicines I did progress on, to see if I can get a bit more time out of any of them.

There is one ray of hope – in January I had to stop taking a biologic called Cetuximab because I had developed a resistance to it. There’s some recent data showing that many patients who develop that resistance lose it with time. So next week we are going to test me to see if I am one of those patients. If so, the data further shows that it’s best to wait until September to start back on it, so while we are crossing our fingers very hard for that to work out, we do still need a treatment for this summer.

It looks like that treatment will be this end of the line chemo, called Stivarga. There’s a clinical trial on currently for Stivarga plus an immunotherapy drug, we’ve been trying to get me onto it all year, but they’re still not accepting new patients so it looks like my best option is to take the Stivarga on its own. My oncologist said there’s a chance we could get my insurance company to approve the immunotherapy drug for me based on the clinical trial data, so I could get the medicine without ever enrolling in the trial. I have no idea how likely that sort of thing is, but I appreciate anything that gives me hope right now.

As if there is not enough to be juggling with treatment, it looks like it is time for me to do more palliative radiation. I currently have 6 alarms set on my phone to handle the 11 different doses of meds I need to take daily to keep my pain tolerable. The pain feels like the bone mets that have been relieved by radiation before, so my oncologists are chatting and figuring out how to move that forward. I really hope it doesn’t take too long to get moving because this state is going to be hard to handle for longer than a couple weeks.

So, that’s all the technical info on how things are going. Then there’s the stupid feelings side. That side sucks. I have been hit incredibly hard by this news. The Stivarga and the Cetuximab are both drugs that I could take and stay stable on for years, buying me a lot of time, but I could also not be the patient who responds that way. I had been imagining a lot of years ahead of me lately, and those hopes have just been cut off at the knees. I want so badly to see and hold my friends right now and I can’t. And also I live in a country where black lives are considered less valuable than property, which is an incredibly fucked up way for anyone to look at fellow humans.

I met with my social worker on Friday and she gave me permission to take the weekend off from trying to feel my feelings, which was just what I needed. I am feeling better able to tackle it all today.

I have been trying to end lately with a bit of joy from the past week and I do have one this go around. Two weekends ago we reorganized some furniture to give me a sewing space I could use during quarantine. My husband is working from home in the space where I used to sew and his office building isn’t planning to open until at least October. The set up we made is so functional and I have used it to sew every single day for the past two weeks – something I never did when I was sewing in my office. It is bringing me an incredible amount of joy to be able to get back to making in a way that doesn’t hurt my body like knitting currently does. It’s also feeling very meaningful because the project I’m working on is a quilt I started almost 5 years ago for my husband. I want to make him and my daughter each a quilt so they have a physical representation of my love for them, and it is satisfying to be making progress on his at exactly this time.

I hope you all have found a moment of joy in the past week and that you’re coping through the ways things keep getting more intense across the world.

Not Like This

Last night I got the call from my oncologist – it is time for me and my family to go into self-isolation. I need to leave the house as little as possible, wear protective gear when I do, and disinfect when I get home. We should pull my daughter from school, whether it is closed or not. My husband should work from home if possible. It is scary and disappointing and inconvenient, but the primary emotion it brings up is one I haven’t accessed much during my cancer – anger.

I am angry at the idea that I have suffered through 4.5 years of cancer treatment to be threatened by a virus that is a mild cold for most. I am angry that it didn’t need to become a pandemic, but our global governments have mismanaged it into one. I am angry that my small joys are being stricken from me – going to see movies, midday naps while my daughter is at school, volunteer work at my cancer center. I have plenty of books and yarn and TV to fill the hours, but it is demoralizing to have no end in sight. And I think I am most angry that I am not even immunocompromised. These are all the right steps to take because the risk of things going bad for me is too high, and it shatters my illusion that I can live like a healthy person. I can’t count on good hygiene to let me do the things that are important to me.

I feel like I should close on a positive note, with a list of all the businesses and people who have been so generous and found solutions to keep some normality during this season. But I’m not ready to go let go of my anger and move to appreciation yet. Maybe by my normal update next week.

Weekly Update #59

Nearly a week has passed since my last update and I still don’t have my Lonsurf. Currently it is at pharmacy #3 who has spent 2 days trying just to bill it – apparently their system won’t let them charge my insurance and the copay assistance program. I’m going to make some calls to my insurance and see if I should just pay the $2K+ copay and then wait to get reimbursed or if that has some risks I’m unaware of. I am trying to ignore the little voice screaming, “You’re not getting any cancer treatment right now!!” and enjoy this mini-vacation from chemo.

I spoke more with my doctors about my trial options and we have decided to move forward with the one at MD Anderson. I’m currently waiting for an appointment to be scheduled there for me to talk to the team and sign consent forms. There is not currently a place for me in the trial, but they’re waiting on some paperwork that will change that in early March. If I could get started on my Lonsurf that would be great – it’s a 28-day protocol so I could get in one whole cycle before starting this trial. I hate feeling like I cannot commit to anything in the next week because I could be called to MD Anderson at any time. You get to give no input into your appointments there, you just show up when they schedule you and if you want to reschedule it can be a lengthy wait.

One of the other reasons I am annoyed at the wait for this chemo is that at this point I’ll start taking it in time for my last day of my two on-weeks to be the day of my half-marathon. So, it feels pretty unlikely I will be running this race. I could get a deferral to next year, but it’s also pretty unlikely I’ll be able to run it then. I want to send the organizers a link to the 13.1 miles I ran last week and ask them to give me my finishers shirt and medal anyway but I am pretty sure it doesn’t work like that.

The last thing I want to talk about is wallowing. I am still feeling low in my mood and energy and unsure how best to take care of myself. Are naps and french fries self care or a path to worse mood and energy levels? I asked about it on my Instagram this morning and received a lot of helpful information to chew on. I’m definitely still open to hearing more thoughts on the subject! I want to meet myself where I am, and make choices so tomorrow is as good as it can be.

Four Year Cancer-versary

Today marks four years since my cancer diagnosis. I was diagnosed in recovery from a colonoscopy. I remember waking up and asking my husband if we had any news and him saying we should wait for the doctor. I later found out that he had already heard the news, and I will be forever in awe of his strength in those moments between when he heard and when I did. I was still groggy when the doctor came in and explained that he’d found a tumor. My husband and I came home and watched one of the new seasons of Wet Hot American Summer, sweating because our AC wasn’t working. I kept getting phone calls from doctor’s offices to set up appointments. I didn’t know who they were or what the appointments were for or whether the order mattered. I was on the cancer assembly line at that point.

I have felt different ways on each anniversary. This year the overwhelming feeling is pride. Living four years with stage 4 colorectal cancer is a big deal. I’m still here, and my last scan showed things getting smaller. I am proud of what I have weathered. I like that I have chosen to respond by becoming softer and kinder. Cancer is so hard, but I think I handle it with grace.

I have not done this alone. I am grateful to my medical team and my non-medical community for their help and support getting through this journey. My family is incredible. They are going through cancer just as much as I am and they bring humor and love and empathy with us on each step. Thank you to everyone who is reading this for caring about me and my illness.