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.
It has been an exhausting week so let’s ease into the recap. I wrote a post for the Dell Medical School blog last month, to tell a little bit about my story in honor of Colon Cancer Awareness month.
I was lucky enough to get to attend CancerCon, a young adult cancer convention, last weekend. I didn’t go into the event with any expectations, I just wanted to take from it what I found naturally. The most helpful thing I heard relates to my post from last week, where I was wondering how I could maintain physical activity throughout treatment. I learned that the current recommendation for cancer survivors is to limit days of inactivity. Flipping the expectation from “be active this many days” to “try to minimize the days of inactivity” feels like so much less pressure, and I have in fact gone on two walks during this chemo week.
As expected, CancerCon brought up some feelings. Over and over at the event there was the message that my peers were finding a community that they had been missing, but that wasn’t my experience. I have such a strong community already that support didn’t feel new. And at times I felt left out of the CancerCon festivities – a reality when you’re in treatment and too tired to participate in the evening activities those in remission have energy for. I expect to keep processing the information I came across there, and I have so many amazing programs to follow up on.
This week was my last chemo before my next big scan. My ribs have been hurting a lot so I am nervous that we’ll find more spread there. I’m ready to get a plan for the next couple months and finish the process of transferring care to the Livestrong Cancer Institutes. More news when I have it!
Use it or lose it has been a theme for me lately. A frustrating, disappointing, taunting theme.
I currently have three injuries I am working on rehabbing. On my left side, sciatica and aching ribs. On my right side neck muscles so tight I wake up lopsided. The ribs and neck, in particular, have been getting worse each chemo round, as my sick/tired posture seems to be the source of these injuries. So I have to deal with them, or continue to become more gnarled two weeks at a time.
I went through menopause as a result of my initial treatment. For a long time I’ve joked that it’s one of the few benefits of cancer, but in reality it has a bunch of downsides. I’m on the road to osteoporosis, and the lack of estrogen has bummer side effects. So I have to supplement now, or risk losing the ability to be intimate with my husband.
I am mad that I require so much maintenance. This body has already lost so many abilities, and now I have hours of work to do each week to keep what I have left. I have gotten serious about it during these two weeks that I have the most energy that I’ve had all year . . . how will I keep it up when I inevitably feel rotten again? Currently it is fear that’s driving me, but that’s not a good motivator long-term. I used to love exercise, but these activities don’t feel good or set off many endorphins.
This is why I call myself a full-time sick person, I have to devote most of my time to simply caring for my ailing body. Maybe I’ll try some tactics from when I could work full-time – setting a schedule or using a Pomodoro timer. Maybe I can make these into goals instead of obligations, ways to see progress in a life that feels like a slow decline. If I figure it out I will definitely share, and if not you’ll hear about what hasn’t worked for me.
In a lovely change of events, I am having a really great off week right now. We added a new pre-med, as they are called (the not-chemo drugs they give you before chemo to help mitigate the side effects) to my regimen this past time around and it has proven to be so helpful. I was better able to eat and drink last week, and by Monday of this week I felt like my head was above water for the first time in months. The nurse said we’d make it a standard part of my regimen from now on.
Another reason I am having such a great off week is knowing that I get two of them in a row to allow for fun travel. I’m currently in Dallas at a fiber festival, aka a knitting convention. It’s a weekend alone in a hotel where I take knitting classes all day and then rest my brain and relax all evening. Next weekend I am heading to Denver for CancerCon, a convention for young adults with cancer. I haven’t felt like one for a long time, but in the cancer world I am a young adult for being diagnosed before the age of 40. I have never been to a big cancer event before, so I’m not sure how I’ll feel in the moment, but I am hoping it will be a place where I feel seen and can connect with peers.
After that it’s my last chemo before the next scan! As I mentioned last time, I ended up getting a CT at the MD Anderson ER over Spring Break. As I was secretly hoping, they compared that scan to the one from February and found that things are looking stable. That was after just two doses of chemo, so my hopes are really up that at the official scan I’ll hear that things are stable or smaller. If so, my doctors would be able to lower my doses to maintenance levels, which are far easier to handle. If not I’ll move to a new chemo drug I’ve never tried before; I assume it’s harder because there’s a reason they try it after they know my current drug isn’t working.
So, that’s what I’ll be up to over the next month. Hopefully the net will be lots of fun times and good news!
Things have been busy here!
I did go see a pulmonologist to follow up on my shortness of breath. He couldn’t find any issues with my lungs and suspects that when I get dehydrated my electrolytes get off and a small arrhythmia causes the breathing problems. I have an appointment with my cardiologist for the end of April to follow up on that possibility.
Last chemo was a lot. All I did that week was sleep and hydrate. It paid off, though, and I was able to take my daughter out of town for Spring Break. I was so happy to feel well enough to manage a solo trip together. We visited friends and played with them as well as visiting some great Houston attractions. I brought my rollator out on her maiden voyage and I can see how this mobility aid is going to be life-changing. The experience was so bonding for my girl and me, and it was nice to give my husband some respite.
Unfortunately I did have to spend an evening in the MD Anderson ER. Ever since a muscle seized up in my neck a couple weeks ago my port has been hurting. The pain was intense and long-lasting enough that I called the nurse line and they wanted me to come in to make sure it was in the right place. It is and there’s no reason they could see for the pain, so it’s probably musculoskeletal. Hopefully my neck finishes releasing soon and I can be done with the port pain.
This week is chemo 3 out of 4 before my next big scan. It’s going well so far. We added in a new pre-med, to mitigate aide effects, and I’ve been able to eat and drink more than normal. I’m hopeful I’ll be able to catch up beyond the things that need immediate attention in my coming off weeks 🤞🏻
It has been another busy week!
Last week I was super dehydrated from my treatment and it took a visit for IV fluids to get me back on track. I figured out I was dehydrated because I was short of breath after walking for just a minute. Right after getting the dehydration under control allergies hit, so my breathing problems continued.
I did manage to rally and go to my singing event and I am so glad that I did. Several of my friends surprised me, which meant so much to me. I saw a lot of tears eyes in the audience as I was singing, which I hope means my song really translates my feelings.
I further rallied and taught at a knitting retreat this weekend. It ended up being the perfect place for me to mostly rest, but also enjoy some wonderful company. Many of the same women attend each year and it was a pleasure to catch up with new and old friends.
I was due to get chemo this Monday, but I was still short of breath so instead I went for a scan to get to the bottom of it. Unfortunately the scan didn’t reveal the cause, so I’ll be following up with a pulmonologist as well as my cardiologist to keep an eye on it.
During the knitting retreat the shortness of breath made it hard to get around the hotel, and I realized it was time for my first mobility aid. Today my rollator arrived – it’s a walker with a seat. I don’t need the walker part really, but always being able to have a seat with me will make a huge difference and make some events accessible to me that otherwise I’d have to sit out. I expected to feel sad to reach this milestone, but instead it’s a relief that I have this option. It’s tough to truly appreciate mobility until it’s a struggle, but now I can appreciate anything that will restore some to me.
Today I am finally feeling better. I am looking forward to my SXSW talk this weekend. I’m told that if you visit the Livestrong Facebook page that the event will be live-streaming – this Sunday at 12:30pm CDT. I hope some of you will be able to turn in and hear me tell a bit of my story!