Weekly Update #88

It feels like everyday in the last two weeks since I last wrote could be an entry of its own, but that’s not quite true. What is true is that it has been an overwhelming whirlwind of activity and I’m not quite through it yet.

I decided to go with the trial at MD Anderson (MDA) after consultation with my medical team and my family. My medical team made it clear that I had several good trial options that it would make sense to try (with the MDA one being a little better) and that what I should consider heavily is who I wanted to treat me. I have nothing negative to say about the clinic in San Antonio, but I had such a great connection with the trial doctor at MDA. Weighing heavily in favor of Houston is also that I have friends here who I stay with and visit with, making it a far less lonely prospect than San Antonio where I have no connection. And finally, the history at MDA, even though it wasn’t 100% positive experiences, gave me a level of comfort that I lacked in San Antonio.

I am glad that I did have that prior history with MDA, because it truly is like a machine here that you get on and go wherever it takes you, and it ma have scared me enough to back out if this were my first time here. Appointments show up on your calendar and you get what you get and you don’t get upset. And then they’ll disappear and be rescheduled for a different day with the same department but somehow a different building? I found the scheduling part left me feeling unmoored, waiting to find out what was planned for me and mostly without the ability to give input. One thing on my side was that my trial coordinator was the one who knew everything I needed scheduled and how the process was going, so I was able to get some updates from her.

She was also able to help me out with my only scheduling dealbreaker – please let me be home on my daughter’s 9th birthday. I had a blood draw that was technically supposed to be that day, but she found the note in the protocol that said it could be done the day before. I do all this cancer treatment so that I can show up and be a mom to her, and I so appreciate that my coordinator saw that – those are the things that make you feel like a person and not just a patient.

It is exhausting to detail all the tests I’ve done, but I want to have it here for people who read this and want to know about trial life, and for myself to look back on. Last week I made a day trip for blood work and a set of EKGs and an eye check up, all to check that I was good for the study, and an x-ray to prove that the port I had inserted at another facility is real. I am glad I had that eye exam because it turns out that my prescription has changed a ton in the last year and I need new glasses. I came back this week for a COVID test (negative) in advance of a lung biopsy. That biopsy attempt went poorly and I had a panic attack on the table. So a second biopsy, this time with anesthesia, was scheduled for the following day. Oh, and then I had a CT. I had to spend the night because of the anesthesia, which was a good rule, I truly was in no shape to drive. I finally got to go home and spend one night in my own bed and with my family. And then the next evening I came back because I had to be at the hospital at 7:30am today.

And then there’s today. More blood work and EKGs and eye check ups. A visit with the doctor to make sure I was ready to start the trial. And then boom, the trial itself. It is fascinating to watch happen, so many moving parts that have to be precisely orchestrated. Pre-chemo blood draws timed just right before the chemo starts and then a line of EKG and blood draw folks outside because their tests need to be done within a set number of minutes after chemo ends, but with a definite hierarchy that I am not privy to. At one point I had both elbow veins accessed plus my port and the little sticky pads for EKGs all over me for later. One elbow vein is for blood draws, they do them at a different site than where the chemo is infused. And my port wasn’t working so they had to access an elbow vein instead (3rd time for that poor baby today), but left my port accessed so that the port specialists could give me some anti-blood-clotting agent. It’s been 3+ hours and they haven’t arrived, but their window doesn’t close for another 40 minutes. After that it will be too late for today and I’ll instead deal with it next time.

This is so long and I’m sure so indicative of how wearing this process is. I’m feeling better now that its underway. And my moment of joy from the past two weeks is sitting on the couch with my dad and stepmom, listening to my daughter play piano for us. I had a lovely visit with them, and hearing her play, the proof of her hard work and the thing that she loves, fills me to the brim with joy.

Weekly Update #87

This week I went to MD Anderson to talk to their clinical trial team. I expected it would go like my visit to another clinical trial team a week before – get examined and leave with some trial options to discuss later – but instead I consented to a trial then and there.

It was intense getting to that consent and it turned out to be an illustrative process. When the doctor came into the room she told me a little about the trial, said she would have me chat with the study coordinator, then she’d come back and answer questions. Then if I felt comfortable I could sign the consent form. Going through the trial with the coordinator was great but I still did have questions. Unfortunately when the doctor returned she handed me the pen to e-sign my consent, told me I should get a flu shot and she’d have her nurse do it, and then she left. I had thought that at some point I would get to ask my questions but the moment for that just never came.

I burst into tears then, overwhelmed, not knowing what was coming next in the trial and still with concerns about the side effects. While sitting there I got a text from the trial coordinator, giving me her number. I wrote back saying I still had questions and she called me to try to answer them. I began sobbing on the phone to her and she told me the doctor would be right back in. The exchange we had when the doctor returned was amazing. I was really scared because some of the side effects will make it so I can’t drive and no longer allow me to be independent. I’ve gotten through the past 5 years by being independent and it terrified me to imagine losing that. The doctor really heard my concerns, addressed them with science, yet never negated them or told me they were dumb or invalid. Then she gave me her cell phone number. At that moment, I was in with her. I trusted her that she would listen to me, wanted to hear my concerns whenever they came up, and that she would help me without minimizing the emotional toll this process takes.

That said, I still do not know for sure that I will go with the MD Anderson trial. I do still have choices in San Antonio and need to chat with my home doctors to rank them. The experiences in the two places would be very different. MD Anderson is a machine where appointments just show up on your calendar, you have no idea with whom or why, no visitors are allowed unless you need mobility assistance, but it also has amenities like a cafeteria and a hair salon and a room with a gorgeous view of Houston. Also I have people in Houston. San Antonio is going to be getting called to find out when an appointment is most convenient and visitors being able to join the infusion center when it’s quiet and potentially needing to get support from outside the clinic. I have no idea where to grab a bite or find a hotel, though these are solvable problems. I don’t know anyone in San Antonio that I could call on for assistance there. It is a lot to weigh and I am letting myself feel overwhelmed by it; it is going to shape what my next few months look like.

My dad and stepmom get into town today, having driven 2,000 miles in an RV to see us. I will doubtless have follow-up appointments at some clinic next week and it will be nice to bring my dad with me; we’ll have to see if we can sneak him in.

My joy for this week was a lovely birthday. It was the day I was in Houston, but I ended up feeling safe there and then came home to a quiet and perfect night with my family. I’m 37 now and this birthday, like each of the past 5, was hard-fought for.

Weekly Update #86

There is so much news from this past week! And my mood is far better than it was last week, when I just felt sad.

On Tuesday I went to San Antonio to visit with a site for phase I clinical trials. We started the process of assessing if I am a good fit for the trials, which includes giving samples and having ECGs done. I also had a physical exam by the doc, which included testing the strength in my limbs. It matters that I am well enough to handle the rigors of a trial and so far it doesn’t look like my underlying health will exclude me. I left with 3 trial options to look over and an appointment to come back in two weeks and discuss them. For the trials I got the huge informed consent documents which include the treatment protocol and how often I’ll need to be at the clinic as well as anticipated side effects and info on the confidentiality around my info.

One thing that is interesting to me is that somehow the definitions of phase has shifted and there are now phase I trials that are not dose exploration, where they find the highest tolerable dose, but dose expansion, where they have more people on that dose and see how they do. A dose expansion trial is much more interesting to me than dose exploration, as I have discussed before.

I also received a phone call from MD Anderson this week setting me up for an appointment with the clinical trial team there. The good news is I get to skip the bureaucratic step of visiting my “current” doctor there. The bummer news is that I will have to be there early in the morning on my birthday. I am trying to see it as a gift that I have this opportunity, but really the gift is that I will get to have socially distant lunch with one of my best friends who happens to live there.

My joy for the week is that I decided to take a measured risk last weekend and rent a house in town with 3 friends who have been as COVID-careful as me. It was so restorative to see their whole faces and hug and laugh together and eat well and just not feel on guard. The house we rented was a trip, filled with original artwork of varied styles and themes. We had a really lovely time and I came home with so much energy after having my soul refilled a bit.

Weekly Update #85

Things have not been great since I posted last week.

On Monday I emailed my doctors a few questions to get a better idea of what might come along with my different options. One of the questions I asked was, what if we do nothing, how long until my disease becomes life-threatening? And the answer is months. It’s a range, so they don’t necessarily mean the 2-3 your brain may jump to, just that it won’t be years. I was shocked by the reply. My body feels fine, how can my tiny cancer grow and ruin it so fast? I don’t know and don’t want to, I just hate it. Anytime I try to process it I think of EOL, so I will be working on all that paperwork soon.

Since I do not feel done yet, my only option is a clinical trial. I have already been contacted by the team in San Antonio and will go visit them next week. I am still waiting to be contacted by MD Anderson, where I have to have an initial visit with my “current” oncologist and then I’ll go home and he will refer me to the phase 1 team. Bureaucracy will bureaucrat and then I go back for an appointment with the clinical trial team. This all means that there are multiple options available to me. I will be in a clinical trial. We just don’t know which one yet.

One bummer thing I have had to talk with some members of my team about is false optimism. There’s research showing that as you near EOL, doctors you have a close relationship with may be more optimistic than called for, because they personally don’t want anything bad to happen to you. And since my doctor ended a phone call with me this week by saying, “I love you” I think I have a reason to be concerned. I had team members reassure me that they are aware and worried, too, about whether I’ll get accurate info. We have a few doctors at the clinic that we are maintaining a distance from so they can be there later to give unbiased opinions on my case. It’s a relief to know my clinic was already ahead of me on this.

Now is when I usually post a moment of joy from the week. It was a nice weekend with my family. We watch a midday movie on Sundays that one of the grown-ups picks, generally rewatches of things from our youths. This week my husband picked the little known move Brain Donors and it made my daughter laugh so hard. I love when she just giggles and giggles.

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 Update #83

Last week I posted that I was so excited to still have the energy at the start of week 2 of my chemo round as I did at the start of week 1. It didn’t last the whole week – at the end of the week and the weekend I was really tired. Some of it felt like overwhelm from feedback to my article, and some I think was my continued battle with appetite and how exhausted I feel when I don’t eat much. I was happy to have the energy return on Monday of this week, though. I’m making a concerted effort with my eating and I just felt better about the feedback. At this busy back to school season I still have a ton to catch up on just from 2-3 days of not beinvvg up on my email constantly.

I have my next scan scheduled for next week. It feels so soon and also like it’s been forever since I had one. Checking back on the calendar my last scan was a PET at the end of July, so 3 months ago meaning it really is time. I am really hoping this current chemo is keeping me stable – it’s so easy to take with very few side effects. Plus after this it’s time to start searching for clinical trials, which I would love to put off for as long as possible. Well, my doctor is already keeping an eye out for trials, but I don’t want it to become the only remaining choice, which is does after this chemo, Stivarga, stops working.

My daughter started 3rd grad this week and I am so proud of her. She is already accessing all her classes independently, she just needs a big of help at the end of the Zoom part of her day, what she should work on for the 90 minutes of work by herself before she sees her teacher again.

My joy for the week is that we made it to at-home school and it’s going well.

Weekly Update #82

Hello! If you’re a new reader due to my Seamwork article, welcome. If you don’t know what that means, allow me to explain. Seamwork is a digital sewing magazine; this summer I pitched them and they accepted it for their September issue, which came out yesterday. The topic is “What To Make When You’re Dying” and is about when I’ll stop sewing garments for myself and start making items for my family, and what those objects might mean in their lives when I am gone. It is intense, and I am proud of it. I have to admit, and this is not fishing for compliments, I always assumed I was a mediocre writer and any compliments from my friends were kindnesses. I am really sitting with the compliments that it is beautiful and I am a good writer and trying to let that sink in.

Last week I was bummed because I had so much energy and knew it was short-lived. I am so thrilled that so far I have maintained it and I have no complaints about side-effects. If I can keep feeling this way on this chemo that would be amazing. We just have to hope that it keeps me stable so it’s worth continuing on.

One thing I do have going on, but not from the chemo, is more pain. And I am really frustrated because two weeks ago I knit for a few days in a row, and then a few days later the pain hit and a week later it is still here, even though I haven’t been knitting. I am trying various stretches, changed to my sleeping position, etc to see if I can make it feasible to knit on a regular basis. Getting to knit once a week sounds incredibly depressing, when I have the time for so much more. I need to go back to the handouts I have from my classes with Carson Demers, the knitting ergonomist, and see what he recommends. I might also reach out to him or one of my PTs (#sickpersonlife) for some help. I know it shouldn’t feel like this. And it has made me afraid to try anything else, lest I make myself even more sore.

At some of my recent cancer advisory board meetings we have been talking about an incredible project I wanted to share. I think that if you weren’t aware before, COVID has made it clear to everyone how difficult it is for members of the Navajo tribe to reach adequate healthcare. One of the local clinics is trying to open an oncology department. This means they could receive treatment on their own land, have native healers be part of their care alongside Western medicine. All this plus, it’s on their reservation vs the current closest oncology office, 200 miles away. If you read about my family and wish you could do something, please consider donating here. I am so lucky to have everything I need and so many things I want. This clinic could use your support far more than I.

Finally, this week’s joy is listening to my daughter play piano. The acoustics in our house mean that the output from the piano float down the hall to my temporary office, so I can sit there on Saturday mornings and hear her working on Carol of the Bells and the Simpsons Theme. You can guess which of those I find more moving.

Weekly Update #81

My energy is greatly increased this week and it is such a nice feeling. I’ve finally had the time to really address my inbox rather than triaging. I am more able to get up and be with my daughter physically. It is a really nice feeling. And then I remember that I just finished an extra long rest period during my chemo cycle and am now back on it, so basically this is as good as I will feel for this cycle and I’m now headed towards the nadir. I talk about it in relation to every chemo – there’s a rhythm to the cycle that you have to discover to figure out how to live your life on it.

A big focus for our family lately has been back to school. There is still a bit before my daughter goes back, but we have our teacher assignment and are starting to have more meetings to learn specifics on how school will run. Getting a new teacher each year means I have to have my annual conversation informing them of my disease, what Marlowe knows about it, and how it effects her. I had to write it on a form this year rather than getting to talk about it in person and I keep feeling compelled to send a follow-up email with more information that I feel like I left out. But it is okay, she has my info and can ask me any questions that she likes. Okay fine, did I just pause writing this to send an email to her, yes, but I also asked a couple questions unrelated to cancer that had occurred to me.

Today I had a Zoom meeting with my oncologist to check up on how I am doing and it was recorded (with my consent) for a podcast being run by my cancer center. The conversation is going to be chopped up and won’t include any identifying information in the podcast, it will just be blurbs used to show what a conversation between an oncologist and a patient sounds like. I am very curious to listen to it when it comes out and hear what made the cut.

My source of joy this week is that I refreshed the Ikea website at the exactly right time to be able to buy the desk my daughter wanted. It has been out of stock for more than a month and I was giving up hope of obtaining one, but she had her heart set on it so I was still trying. She was so appreciative of my success, and it felt so great that she recognized how committed I had been to fulfilling this wish for her.

Weekly Update #80

I cannot believe that I missed my cancer-versary last week – the anniversary of my cancer diagnosis. It was 5 years, an important milestone I had long dreamed of celebrating. When you first get diagnosed and immediately search survival statistics, they are all phrased as percentage of those diagnosed still alive 5 years later. So 5 years becomes this magic number in your head. Here I am, still alive 5 years later. The bigger celebration for me will be next year when I get to 5 years since realizing I had stage 4 cancer. The survival rates are incredibly different (by literally an order of magnitude) and I truly thought it would be a miracle for me to reach 5 years of stage 4. But it’s going to happen next year. And this year I have made it to 5 years since I was ever diagnosed. Like last year, I am incredibly proud of having made it this far. Of the luck and putting up with unpleasantness that has allowed me to make it another year sick and alive.

This week has been an eventful one. I upped my dose on Tuesday of last week to the full dose of Stivarga and just a few days later had the experience where you message the office about a side effect and the doctor is calling you 10 minutes later. Eek. I was having a decent amount of blood show up on my pads, which is not normal, and is a risky side effect of this drug. My doctor immediately took me off the drug for the rest of the week and then told me to take the following rest week as normal.

I went in-person today to see my doctor. She said that I looked okay, much better than my last in-person visit where I was kind of droopy with dehydration. We had a nurse from the Gynecological Oncology team join us and do an internal exam. Unfortunately she was not able to find the source of the bleeding. So, that means I need to go for a vaginal ultrasound later this week to see if it reveals anything. That said, the nurse didn’t actually see any fresh blood and my oncologist took that as heartening and said that next week I can start on the middle dose of Stivarga, pending bloodwork on Monday showing that everything looks good.

I’m also currently taking a break from my blood thinner to really cut off any bleeding that may be happening and allow it to clot and stop before we start me back up on this medicine. I followed up with my cardiologist today and he said my heart looks really healthy and strong.

Overall I am doing okay. I have a lot of fatigue, I think I could easily sleep 16 hours a day and I spend a lot of time trying to fight off falling asleep in my chair. So I am going to prioritize naps and physical movement, both of which can help boost energy. I have some suggestions for some of the other side effects I have going on.

My recent joy is that I was part of a group of women that arranged an anti-racism march that went really well. We were happy with the turnout and the energy at the event – really positive. It was great to see our idea become real and to see the number of people who wanted to show up and affirm the same values as us.

Weekly Update #79

I have been putting off writing this week because it feels like there is not too much to say, although that’s not quite true.

I continue to have low appetite and lose weight. The few things I have tried from the nutritionist so far clearly aren’t enough, so I need to step it up. She wants me to be drinking high-protein high-fat smoothies between meals which feels pretty hard but I will attempt it. All of the things I am supposed to try feel hard since I don’t have very much energy.

Last week I had a fever one evening which led to a couple days of recording my temperature and blood pressure and heart rate every couple hours and texting it to my doctor. I’m glad I was able to avoid having to get a COVID-19 test, to keep me out of the places where they are administered. One weird thing I noticed around the day the fever hit is that I was experiencing some delirium. We took me off one of my heart medicines and are continuing to keep a close eye on me.

I am so tired I keep falling asleep sitting up in my chair trying to accomplish things on my computer. Or in the middle of watching a show with my husband. Or when I am stubbornly reading instead of sleeping and drop my phone on my face. I don’t know I don’t immediately nap when I’m tired. Sometimes I guess because I am trying to be awake for medicine timing or what to take a longer nap later, but I alway regret not just sleeping the moment my body wants it.

My joy this week is Coca-Cola. I have been craving it and knowing I am low on calories decided to allow it into my life after a very long time without soda. It just tastes so good and the caffeine helps with the fatigue.