Weekly Update #84

What I want to do right now is crawl into a hole and ignore the world. Instead I am going to rip the bandaid off right now. And then possibly crawl into a hole afterwards, we’ll see.

I had a CT scan this morning to check on how well my current chemo, Stivarga, is controlling my cancer and I found out this afternoon that is answer is, very poorly. Although I didn’t show any new tumors, there was growth in my existing tumors. It’s enough to take me off this medication. This sucks because there is no “next drug” for me to try. If I want to continue cancer treatment I need to participate in a clinical trial.

I knew very little about clinical trials before my care team started talking with me around a year ago about how they would definitely be part of my care at some point. I am guessing this is true for most, so I’ll tell you a little about them. There are 3 phases – phases 1 is to test the dosage, different participants take different doses to find the highest non-toxic level. Phase 2 is to expand to a larger audience – they use the best dose as determined by the previous phase and a larger group of patients, take the drug to give them more data on how successful it is. Phase 3 is the final phase and the only one with anything resembling a placebo – some participants are given the trial drug and some are given the current standard of care aka some other approved treatment. So there are no cancer patients receiving no medicine at all, a huge fear of mine. Next up, you give consent to participate and you can quit at any time for any reason. Sorry researchers, but my life has changed or the side effects are too much or whatever, and I can walk away. Additionally, participating in a clinical trial, especially a phase 1 trial, is time-consuming. Often you have a 12-18 hour day at the clinic on day 1 because they want to draw blood from you over and over to see how you metabolize the drug over time. You’ll have to be in often for visits and blood work, especially in the first weeks of the trial. I’m not against being super vigilant when you’re putting a drug into humans for the first time, by the way, just noting the commitment.

When we spoke today my doctor said she wanted to find a phase 1 trial for me. Phase 2 sure sounds better to me, so that’s one of the things we’ll talk about in the future. At this point it’s in my hands what comes next. I could choose not to do a trial – it is walking into the unknown and potentially having huge QOL losses – but I just don’t feel done yet. I will let my team know when it’s time to pull the trigger and start the process of finding a trial for me. There are none at my center, so we’re looking at MD Anderson where I was previously a patient, and a place in San Antonio I always forget the name of. The time commitment I mentioned above becomes a much bigger deal when you’re going to be away from home for it. We’ll figure it out when we have our choices in front of us. For now, though, I am going to spend the weekend reading and watching movies with my family and will deal with this next week.

My joy for the week is that my childhood best friend very generously sent us a lamp for my daughter’s desk and it has made her room so much nicer for Zoom. I wrote my friend asking advice on lighting for the desk because it’s her husband’s industry and they insisted on sending us the light. My husband and I drilled it to to the underside of my daughter’s hutch and it makes her work area glow. And as soon as it was in my daughter got out her computer (on a Sunday!) to play around in her space.

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.

Weekly Update #65

Another two weeks have passed. Time feels so weird in this pandemic time. I was looking back at my last entry and it all feels so far away. I had forgotten nearly all of what was happening then. I’m sure I’ll feel the same way reading this in a week.

Last week I had a scan on Monday. It was incredibly bizarre to go to a clinic at this period in time. We scheduled my scan at a local branch of a radiology practice, rather than the office I normally go to attached to the hospital, to lower my risk. Even still, before I could enter I was interviewed by a pair in head to toe PPE including face masks and coats. They took my temp, asked screening questions, checked I was on the list for that day, and then finally opened the door for me to go in. One thing I hadn’t realized is how much masks hide people’s facial expressions. I could tell the woman at the front desk who checked me in was truly smiling because it reached her eyes, but for most others it was impossible to tell what they were thinking or trying to silently communicate.

The scan involves injecting a constrast dye, and we wanted to use my port so we’d go through the cleaning process I’m supposed to do every 4-8 weeks (depends on who you ask) instead of setting up a separate appointment. The tech who accessed it was unhappy with the amount of blood return he got and recommended a dye study test be done to follow up. In a normal world that would have been done last week. In today’s world we’re putting it off at least 2 months. The tech mentioned that his wife crochets and when I asked him about it he showed me page after page of her projects on his phone. I love a proud crafty husband.

That was a lot of lead up to the scan results, which were stable. So, the plan is for me to stay on the same chemo for the next two months. I like that idea, I feel safe on this drug that I can take at home and only requires two blood draws out of the house over the four week cycle. While stable is always good news for me, this doesn’t feel like good news. Partially because my blood marker, CEA, is climbing, which means that the next scan could have bad results. And apparently this drug, Lonsurf, rarely does shrink anyone’s cancer, its role is really just to keep them stable. That sounds desperate to me, makes it feel less safe.

There is still a clinical trial at MD Anderson that we are hoping to enroll me in, and it is scheduled to accept new patients in June, which is when my two months of treatment will be up. I never imagined that I would be leaving the house in June and am surprised my doctor thinks that will be reasonable, but she’s far more informed about the risks than I am. And really, all I can do is wait until then and see what happens.

As for how I’m feeling physically – mostly just very tired. I’m still needing a nap most days, on top of 9-10 hours at night. An amount that wouldn’t be a problem if I didn’t have to be in charge of schooling an 8 year old, but is tough in the circumstances. I have managed two runs in the 3.5 weeks I have been home. A few more walks than that, but generally not much activity. I know it’s so important to help fatigue and for my health, but it requires a herculean effort to achieve some days. If anyone has any hints on staying active despite fatigue I will take it.

As always during this time, I hope you’re all well. I’m thinking of my cancer community and what a hard time this is for us all. I’m thinking of my friends and how much I wish we could be in person hugging. My ears are always open if you’re having a hard time. ❤

Weekly Update #57

It has been a while since I have had to type this, but my scan results last week were not great. Not terrible, but not great. Several of my spots of cancer – in my lungs and in my ribs – are bigger compared to my November scan. Nothing is a lot bigger, but any progression means that my regimen is not working and it is time to move on to something else.

So, what comes next? A clinical trial. Right now my team is looking at what is available and picking out a first choice, a backup, and a backup backup. The way clinical trials work, though, is that I cannot start any time I want. They are enrolling and starting new patients at certain windows. So, while we are finding the right trial for me and waiting for them to be starting new patients, I am going to go on a new chemotherapy. It is an oral chemotherapy called Lonsurf, which is similar to my first chemo, also a pill. It will be a really different rhythm than infusion. Instead of a couple days of feeling really crummy, this will be gradually feeling more and more run down over a couple weeks, and then recovering over a couple more.

I don’t mind that switching to oral chemo means no more 6 hour infusion sessions, but overall I am bummed about these changes. I am giving up a known, livable treatment plan for the unknown. I don’t know how I will feel on my new chemo, and I also don’t know how long I’ll be on it before I’ll start on a clinical trial. I just have to wait until I get the call, unable to plan very far into the future – once I get the call I will probably be on the trial in about two weeks.

The other big unknown about the trial is where it will happen. One of the options is at my local cancer center, but there are also options at MD Anderson and a couple other sites in Texas. I would definitely prefer to get treatment locally, but if I have to travel to get access to the most promising drug I will make that work.

All I can think about is how will timing work out with my half-marathon and Spring Break and various other commitments. I am trying to feel my grief and discomfort and lean into self-care. I’m glad I have the time to take care of myself this way right now.

Weekly Update #52

Last week I had a PET scan and the results were good! The tumors in my lungs continue to be stable or smaller. I am so pleased that we’re still seeing a response to this current therapy regimen. There was a small bit of progression on one rib, and a suspected new area on my spine, so I will do a follow up MRI to assess those and probably do another round of radiation in a few weeks. I tolerate radiation really well, and they’re short course for this sort of thing, so I’m not too bothered by adding that on for a bit.

My doctors really worked hard to get me results on my scan day which was really wonderful. I had brought a book to pass the time between appointments and had just settled down in a quiet spot when someone else sat down nearby and started watching news footage of a school shooting without headphones. It was more stress than my body could bear at the moment, so I went to the front desk and asked if they could put me in a room early. It was a little thing for them, but made such a difference in my experience to spend the next two hours in a quiet, relaxing space rather than gritting my teeth. My husband was able to join me while we waited for results and it was fun to pass the time playing pictionary with him.

One of the reasons I’m so relieved about this good scan is it means we keep on my same regimen for the next two months. I will be on known, predictable treatment through the holidays. Last year I had a scan on the same day, actually, and moved to a new regimen. That one was incredibly hard on me – we had to reduce my dose because of how poorly I tolerated it and I was pretty miserable through my daughter’s winter break. I remember how sad I was thinking that Christmas might only be downhill from here, and instead this year I am on track to feel even better. I am so grateful for the gift of quality time with my family.

I also get to keep up my half-marathon training! Yesterday I did 6.5 miles and the long runs are continuing to feel great. I’m going to ask at my young adult advisory board is anyone else is planning on running the race, as I think it would be fun to set up a team so we can have matching bibs.

Chemo continues on schedule for this week, so I am off to get some more fun things done in the part of the week where I feel better!

Unequivocally Good News!!

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.

Weekly Update #27

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 🤞🏻

Weekly Update #25

I’ve been busy and worn out lately and now I find myself with three weeks worth of news and thoughts to share. Let’s jump into it!

Results

Two weeks ago I visited MD Anderson for a follow-up scan and visit with my oncologist. The news was meh. There has possibly been a very small amount of growth of a few existing spots, though most of them were stable. My blood marker dropped precipitously, which is a good sign, and also confusing when taken with the CT findings. The plan is to do four more doses of the more intense regimen I’ve been on – if we see growth next time then we’ll move onto a new drug.

The CT also revealed that I have a small blood clot in one of my lungs and that when I thought I pulled a muscle from coughing last month, I actually fractured a rib. To deal with the blood clot I have to give myself daily injections of a blood thinner. The fractured rib is healing well and is a reminder that my bones are fragile and I need to be really proactive in shutting down coughing.

Logically I’m fine with all this news. I can handle four more doses of this drug, and I can suck it up and give myself tiny injections for 2 months. But emotionally it’s been much harder. I’m feeling tired of non-stop chemo and just of being a sick person. I wish I could take a break for a bit and come back to cancer refreshed.

Humbling

Yesterday I had the humbling experience of bottoming out at a friend’s house. After a few hours of sitting doing a jigsaw puzzle I became so dizzy I had to lie down. Eventually my friend had to drive me home because I wasn’t safe behind the wheel. This is a good friend who took it all in stride and was so loving, but it was so hard and vulnerable for me to experience. Not being healthy enough to sit upright for more than a few hours is embarrassing – I don’t think of myself as that sick, but apparently I am. Upon getting home I finally figured out I was super dehydrated, and I’m still trying to replace the electrolytes and fluids I lost.

Exciting News

And finally, to bury the lede, I’m ready to share some of the exciting news I referenced in my last post.

First up, I’ll be performing my song live at an event later this week. Here is the page with more information about the event. I’ve never performed the song live, but am really excited about the opportunity to share it and talk about how amazing it was for me to participate in the program.

And the other amazing thing is that I’ll be speaking on a panel at SXSW. Here is a link to the panel description – I’ll be speaking about my experiences as a cancer patient and why I think the new Livestrong Cancer Institutes model is going to be beneficial to cancer survivors. I’m honored that they invited me to participate and am pretty excited that I also get a badge to enjoy some of the rest of the SXSW festivities!

That’s plenty of catch up for today. This week I’m going to focus on self-care and try to be in a better place for my next infusion in a week.

Weekly Update #24

It’s the week before my next scan, which means my anxiety is up. I generally don’t spend a lot of time thinking and worrying about the scan itself, my worries tend to present themselves in other ways. This weekend I found myself interrogating my husband on what he planned to buy at the grocery store before suddenly gasping and saying, “I don’t know why I am doing this.” We ended up having a good laugh about it and I’m trying to be gentle with him and those around me in the mean time.

I am still feeling frustrated with the disconnect between my energy levels and my abilities. My energy is high again, but between a pulled abdominal muscle, sciatica, and a spasming neck muscle there’s not much movement I can do that’s safe. Even the stretches for the latter two ailments irritate the former.

This week I have had two exciting opportunities fall into my lap. I’m going to keep them close to my chest for a bit longer because they’re so exciting that revealing them feels like it might make them disappear. It continues to be both humbling and fulfilling to have opportunities to share my story.

Weekly Update #13

Hello! This week was scan week so I come to you with updates.

Unfortunately, I did not see the results I hoped for. There was a bit of new cancer – a new spot in my lungs and a new spot on a rib – as well as growth of an existing spot. So next up we add a drug to my chemo regimen and do some radiation for the rib spot. The hope is that this will get me stable again and in 2 months I go back to maintenance.

I love my new doctor so much. I felt panicked when I first heard that there were new spots, but she did a great job of putting it into perspective. This is an incredibly small amount of disease progression for 9 months of maintenance chemo off and on. She doesn’t want to go in guns blazing forever, just knock this back and then let up. I feel like she cares so much about me and my quality of life.

That is not to say that I am psyched about these results. My blood marker was dropping and I felt so good going into this scan – it’s really frustrating that the information was inaccurate. And knowing that I do this heavier chemo and back to maintenance somehow clicked for me that, right, this is my life for the forseeable future. This isn’t even a marathon, because while they feel long they do eventually end and you get to rest. I’m not sure how long I’ll be able to keep up my spirits knowing that there’s no recovery period coming. My mental health plan is to keep taking it one day at a time and take opportunities to fill myself up when they arise.

I mentioned a few weeks ago that I had made a connection to visit a local colorectal cancer research lab. This week I joined the lab for their Thanksgiving potluck and then toured the facility. I used to be a biologist, so I loved getting to hear about their research and seeing where it happens. The lab leader is an oncologist and while she’s not officially my doctor, she wants to keep in touch about my treatment. I feel really fortunate to have this connection.

I’ll end by saying that I spent the afternoon helping a friend in need. I had planned on relaxing after this hectic week, but instead I showed up when a friend was hurting and I could help. And it felt really good. It’s so true that helping others is a great way to pick yourself up.