Weekly Update #90

I am definitely not keeping up with the “weekly” claimed in this entry’s title, but am here today and not going to overthink it.

I want to talk a little bit about why I have been writing so infrequently. Some of it is lack of energy. But some of it is that I feel like I only have bad news to share recently, and I want to talk frankly from the place of beginning to accept that I have probably moved from chronic to terminal disease. It is a bummer to share this stuff and feel like I am hurting the people that I love. I don’t want to cause pain. But I have realized recently that keeping it all inside is contributing to how badly I have been feeling. Each time I share my worries a bit I have an immediate energy boost afterwards. And I want this to be a place for me to be honest about the good and the bad. So, I am going to show up more, and if you want to keep reading, it may get harder.

I did get my second dose of my trial drug at MD Anderson last week and stayed a few days for blood work, which was all uneventful. I also had my day 8 blood work earlier this week. The plan was that then next week I’d go in for day 15 blood work and then the week after that for my scan and hopefully dose 3 and from then on my commitment would drop significantly, to only showing up for my infusions every 3 weeks. Unfortunately, we’re changing the plan.

On Wednesday of this week I felt awful all day. Blacking out when I stood up and so short of breath and alternately sweating and covered in goosebumps. And then I passed some blood in my bowels, which is especially odd since they aren’t hooked up to the rest of my digestive system, and I threw up. At that point I called my trial doctor and she told me to go to the ER. I cried while I listened to her instructions, so scared to head into an ER right now, knowing she was sending me because the COVID risk was worth it. She told me that the blood I was passing was likely from the tumor in my colon, which makes sense. Then she added that it is likely a sign that the tumor is growing, so she is going to move my next scan up by a week. She did also mention that shrinking tumors can bleed, but didn’t seem to think that was as likely.

I only spent a few hours in the ER. They did a COVID test, which was negative, and some generic blood work which all looked good. They also did a chest CT which showed no blood clots (a concern because I was so short of breath) but possibly the start of some pneumonia. So they sent me home with antibiotics and instructions to come back if I felt bad again or got a fever. I am truly glad they only scanned by chest and not my pelvis. I was not ready to learn what is going on, alone in the ER on the night before Thanksgiving. I am happy to spend these few days blissfully ignorant and then deal with the news next week when I receive it.

Oh, I should mention that I had an ultrasound earlier this week to check on my hydronephrosis and the test showed it looked the same. So, still no need for a stent, yay. I also learned that I had no idea where my kidneys are, definitely not the area of my pelvis that has been hurting and I have been imagining is my kidneys swelling to bursting. Unfortunately I looked it up and the part of my pelvis that has been aching off and on for weeks is where my appendix is, so I’ll be bringing that up with my MDA team when I see them next week.

For now I wait for my schedule at MDA to update so I know when to show up for my scan and the results. I have a local cancer friend who has his regular MDA appointments next week as well, so we’re going to try to meet up and even possibly have him come with me to the appointment where I get my scan results, so I don’t have to go alone. I’m not allowed to bring in an outside visitor, but if he’s already allowed to be in the building, I don’t see why he can’t join me for my appointment.

My joy for this week has been the family time together. Thanksgiving yesterday was a wonderful day of cooking and eating and time together. My daughter took all the initiative on planning the activities for our annual advent calendar and I am bursting with pride at her resilience and creativity. I hope you are all having wonderful time off and not traveling anywhere to see anyone, to help keep people like me safe.

Weekly Update #89

I know I have worried a lot of folks with my long radio silence. I’m here, I have just been having a rough time lately.

Before I get into that, I want to mention that I was interviewed for a podcast called Grief Is A Sneaky Bitch and the episode came out this week! I talk about the pre-grieving I am doing, knowing I am chronically ill and death is on my horizon, and the host, Lisa Keefauver is an amazing expert on grief. Here’s a link to my episode, I think you will really like it.

So, as I opened with, I have been having a hard time recently. I wasn’t ready to talk about it last time I posted, but when I had a CT scan just before starting the trial, it showed that there’s some activity in my pelvis. There’s a mass that involves my original tumor site and my cervix that they can’t tell from the pictures whether it’s a recurrence at my original site (most likely) or new cervical cancer (unlikely). The mass is squishing one of my ureters, the tube between your kidney and your bladder, so we’re keeping an eye on it and some point we’ll need to have a stent placed to make sure my ureter can keep on draining.

This news was really scary to hear. I haven’t been able to share it with almost anyone, it just feels so awful. Since reading that radiology report, I have noticed discomfort in my pelvis and it has gotten into my head that I am feeling my body rot away. I recognize that only having these sensations after reading about the mass indicates that maybe my anxiety brain is involved in the feelings, but that doesn’t remove the fear it brings to my body.

Along with this, my appetite has plummeted again. I’ve lost more weight and am about to start some meds to stimulate my appetite and prevent me from feeling full so quickly. My nutrition situation is so bad, I’m starting to get winded just walking around the house because I don’t have the energy to support myself and I’ve been losing muscle mass. So I’m trying to do just 10 minutes of walking outdoors each day and my nutritionist and I brainstormed a few options to increase my intake. I feel embarrassed that I can’t solve this problem that has been ongoing since July, and my nutritionist always makes me feel better by reminding me that I really am trying my hardest. Unintentional weight loss has never been an issue for me in my life, but man is it hard to force yourself to eat when food is unappetizing.

I’m sure not eating enough is contributing to my mood, which has been low lately, too. I feel like that is finally improving. I have the energy today to write this post. And I can imagine replying to an email or two (so sorry if you’re waiting in my inbox). My mood is still precarious, but Biden winning the election is definitely helping to tilt everything towards more manageable right now.

Next week I head back to MD Anderson for my second dose of my trial med. It should all go smoothly now that I know what to expect. I’ll miss my family for a week, but it will be the last full week I’ll need to be away for the trial. And truly, it is very joyful to get to spend time with my friend and her family while I’m there.

My joy for this past week is that Joe Biden won the election. When I saw the results and felt hope, I realized what an unfamiliar sensation it is in my body and frankly I didn’t like it. But I’ve experienced it more and more this week and it is starting to feel really good. I am excited for his presidency to begin and for us to undo the mess caused by the Trump administration. And also to watch Trump et al. go to jail. I’m excited about that, too.

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.