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.
As someone who has blood drawn fortnightly at a minimum, I appreciate that I have good veins and am an easy stick. Unfortunately, the same cannot be said for my port – due to a combination of weight gain and (bad) luck of positioning it is difficult to access. This past week it behaved particularly badly and had a clot in it that we had to wait to dissolve before I could start my infusion. The nurses gave me the choice to get my infusion sooner through my arm, but I get 4+ hours of meds, and that is a long time to be stuck with my arm straight. The nurse said that clots like these tend to crop up every 6-9 months and while I can’t find any evidence of it in the archives of this blog, I am pretty sure I had one about 9 months ago. So, hopefully I am all set until May of next year.
I’ve been thinking about compliance this week because I have been skipping some of my meds recently. Some because they’re unpleasant and some because they have a small window when I can take them and I haven’t put in the energy to remember. I am trying to do better this week; I know my doctors don’t put me on drugs for the fun of it. But I also have so much more compassion at this point for non-compliance than I did earlier on in this journey. I get how exhausting it is to always be tracking so you have your meds, to reinforce your sickness multiple times a day, to have to do painful procedures. I get how non-compliance comes from barriers rather than people not wanting to take care of themselves. I appreciate medical professionals that see non-compliance as a patient need that’s not being met rather than a personal failure.
It’s time over here for back to school and it has me itching to plan the family calendar. I have my daughter’s extracurriculars planned and wish I could feel as settled myself. At my new clinic I don’t plan my scans months in advance, we book them more like a couple weeks out. That flexibility is wonderful, but also means I don’t know what my chemo schedule looks like after the next couple infusions. Why do I need to know now if I’ll have chemo on October 9 or October 16? I don’t, but my whole body would feel more relaxed if I did. I’m also pondering changing the day of the week I get my infusion once school starts up and am (over)thinking the best day given our commitments. The last piece of the fall planning puzzle is I am torn about undertaking my own extracurricular activity. A survivor I met recently recommended a meditation class to me and I am tentatively enrolled to take a similar one. I like the idea of increasing my mindfulness tools, but am also terrified of delving into the pain that causes me to seek them out in the first place. The class is a serious commitment of time and energy and I am feeling nervous about the investment. Fingers crossed it all becomes a bit easier to decide over the coming weeks.
It has already been a remarkably productive week for me already by the time I’m writing this at midday on Tuesday. I’ve needed less rest time this week and have been able to knock out a bunch of really satisfying little tasks. It feels like energy like this only pops up right before treatment (I go in for chemo tomorrow) and it always makes me mourn the things I could be getting done if I were healthy. And every time I feel torn because I am working on accepting that my value doesn’t come from my productivity, but also I like getting things done because it feels good to accomplish things. I don’t know how to reconcile those ideas or if they are reconcilable?
This week is my last one with my personal trainer. It has been awesome, and has really helped me feel ready to be in charge of my workouts. I used to be a runner and have really been missing it, so I’m getting back to that. Today I went out for 30 minutes doing run/walk intervals and it was literally nauseatingly hard. But it was also amazing that my body can still run. I can breathe deep and use so many muscles and push myself for half an hour. Earlier this year I found it challenging to stand for that long. Yesterday I went to a great yoga class and focused on connecting with my body, something I find increasingly hard as I spend more time as a patient. It’s really thrilling to be able to work my body and I want to take advantage of this opportunity as much as I can.
I have taken enough doses of this new regimen that I have a pretty good idea of the range of side effects. Right now as I am going into treatment (cycle days 12 and 13) my skin gets really dry. The skin on my eyelids often flakes off, and I get areas of redness and sensitivity on the tops of my cheeks that look like I got too much sun. My neck gets the ugliest rash – it’s red and feels scaly and is spread in slashes up and down. The tips of my fingers flake off and feel extra sensitive. My heels crack and bleed. If I have to remove a bandage in this time period I’ll get a skin reaction. After I get my treatment I will be nauseous and tired. On day 3 the gas will hit and be uncomfortable for several days; this is also when my skin will clear up. Days 7-11 are the only ones without any noticeable side effects. It’s helpful for me to have these written down, and maybe they’ll be helpful for someone else on the same regimen – Irinotecan and Cetuximab (aka Erbitux).
Not really looking forward to the worst-feeling days of the cycle, but am glad for the opportunity to kill some more cancer.
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.
I just got home from the oncologist’s office where I got my scan results and they’re really good! No new cancer, nothing grew, and in fact several tumors shrunk. It has been a very long time since I’ve been able to share an update like this and it feels so good to do so.
I also have to comment on how much better the experience was than at MD Anderson. There I always spend at least half an hour in the waiting room before being brought to a room where I will also spend at least half an hour waiting for the doctor. That whole time I am alone and my spine is hot with fear. Today I saw my oncologist in the hallway while I was checking in and she let me know right away that the results were good so I didn’t have to wait and worry. My husband was there with me to celebrate. I was back at my house within 15 minutes. I am so appreciative of how great today was.
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.
I mentioned last time that I was going to be on the local news – here’s a link to the clip and article. It was really great to get to talk about the work I have done with my local clinic and how much I enjoy being treated there. I am so happy to be able to help build a cancer center that I get to be a patient of as well.
I’ve been putting off this post because it’s going to be hard to talk about what I want to talk about. I am hopeful that getting it out there will be a net positive, so I’m being brave and tackling it.
I know my boundaries about cancer information really well. I know what will provide me comfort and what will give me anxiety. And last week I crossed that boundary and I truly regret it. As I talked about in my last post, I was worried that I didn’t have the rash that I had been told is correlated with this treatment being successful. I was curious if that was really true, so I googled and I read a research paper about it. And it is true, per that paper, that getting the rash within 8 weeks is indicative of a response. I’m at 4.5 weeks now and the rash has been progressing, so that anxiety is lessening. Additionally, when I mentioned it to my team last time my nurse mentioned that there may be some new research showing the correlation isn’t that strong, so I am waiting to hear back on that.
The tough thing that I saw in that paper was the overall survival of the patients, from the time of their first dose. The longest person lived 4 years. I have accepted that my disease is incurable and can process that news in terms of living the life that I want to now. But seeing a number that is far smaller than I had hoped in a scientific paper has really thrown me for a loop. It has meant sitting at my 7 year old’s ballet recital and wondering if she’ll stick with it long enough to dance point and realizing I won’t live long enough to find out. Thinking about whether it sounds more tragic to die at 39 or 40 – is it sadder to miss the new decade or just reach it? Four years is so short, and I know that not all of my last years will be good ones, so how much good time does that mean I have left?
The study I read is 4 years old, and I know that means that the medicine I have access to will be different. And that I am none of the patients in that study. I am trying very hard to hold onto these facts. I think there is value in preparing myself for my eventual death, but not in focusing on counting down my time when we don’t know what the clock is set to. If you see me in person I don’t want to talk about it, but I would definitely take a firm hug. And if you see me electronically, I’ll take the intention of a hug.
Let’s kick off this update with some scan news. Since I last wrote I’ve had a PET scan and an MRI to follow up on some potential new areas of disease seen in my April CT scan. Together they show that there’s no new (or any) cancer in my pelvis, which is really great news! In less awesome findings, it looks like there is a new spot on one of my vertebrae; we’ll continue to follow the bone met protocol for that and do targeted radiation to the area when it becomes painful.
Chemo #2 of the new regimen is under my belt and it continues to be such a quality of life improvement! I have energy, I feel good, I’m not in pain – it is such a relief and I am really enjoying it. I talked last time about finding projects to take on during this period and settled on one of them – getting back to working out. I am working with a trainer and we’re trying to conserve and build muscle and flexibility. It is incredibly humbling work, and I know it’s one of the best investments I can make in my time and energy to maintain quality of life in the future.
It seems like now that I’m not living in survival mode and have some resources available, some emotions have decided to step in and demand to be dealt with. I am feeling a lot of fear lately – having these scans done and reading the reports drives home how much my disease has progressed in the past year. My vanity is glad that I haven’t developed the face rash that’s characteristic of my new chemo drug, but I also know that there’s supposed to be a correlation between response to the drug and the rash so I am worried that my clear skin means it’s not working. After my time with this treatment is done it’s time for clinical trials, which is much less rope than I want to have.
Additionally, I have had some tough conversations with my family lately. After my latest trip to MD Anderson, when my daughter asked hopefully if my cancer was gone yet, I began to wonder whether it was a kindness not to share with her the chronic nature of my disease. I don’t want to talk to her about my death, but I realized that it was possible to share my new status without getting into that. So now she knows that I will be receiving treatment of some kind for the rest of my life. She hasn’t asked about questions about how long that will be and I am not planning to bring it up. Based on a conversation with my care team about their plans for managing my side effects in the future, my husband and I had a talk about my wishes for the future. I have a will and he knows what I want to the very end of my life; this was about the time when I will be in decline and how I want him to seek any help he needs. We also talked about my concern that at some point me being alive with bring him and my daughter more pain than comfort, and that I want to know if that happens. I’m not sure what we’ll do at that time, but I don’t want them to hide their negative emotions from me.
To try to wrap this up on a lighter note – I’m going to be on the local news on Sunday night! Sunday is National Cancer Survivors Day and I’m going to be interviewed about my experience as a cancer patient, and the work I have been doing with my new local cancer center. I am hoping that the segment will end up online and I can share a link here next week.