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.
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.
Last week was scan week. The results were pretty meh. Two things in my lung got a tiny bit bigger, though everything else in my torso stayed stable. It’s not really much more cancer, but it makes it clear that my current regimen isn’t keeping me stable, so it’s time to move to a new one. I met with my oncologist today and we finalized the plan – I’ll stay on one of my drugs, Irinotecan, and add in a new one, Cetuximab. The latter is a biologic which is nice because it doesn’t come with the same chemo side effects, but unfortunately it does come with one big one – acne-like rash on my face, neck and chest. Nearly everyone on the drug gets the rash, and there is evidence there’s a relationship between the rash and my response to the drug so unfortunately I want it. I am pretty bummed about it – all my side effects so far have been things I can choose whether to share or not, this will be my first publicly visible one. I’ll be getting some medicines and creams to help manage it, so hopefully it won’t be too bad.
The other thing we saw on that scan is that there is potentially a new metastasis in my sacrum. I was diagnosed because of tail bone pain – the tumor must have been pushing on it because as soon as I started radiation/chemo and it shrank the pain went away. So, while we are going to do more imaging to verify, I am pretty comfortable assuming that this is a new bit of cancer. The chemo will help, but I’ll also do some more radiation to address it.
One thing I enjoyed about this visit was the difference in how the doctor there presented the information to me. Historically MD Anderson writes my treatment plan and my local oncologist executes it. This time around it was clear from the way the doctor spoke that my new local oncologist is the alpha – he had some ideas he was going to email her, but that she’d make the final decision because she’s the expert. I feel so so good about my decision to switch local oncologists. And, I’ll be able to do my scans at home in the future and cut out these bi-monthly trips to Houston. The drives have been getting physically hard/exhausting, so I am not at all sad to give them up. I’ll still maintain a connection with MD Anderson, but Livestrong Cancer Institutes is definitely my main office now.
Overall I feel surprisingly okay about the news. I’ve been able to frame it as information about how I’m responding to this drug and that has been really helpful. Based on the genetic profile of my tumor we have reason to believe I will respond well to this new regimen, so I am ready to get started and give it a try.