Weekly Update #95

I didn’t mean to let 3 weeks pass by with no update but I did and now, yet again, things have changed quite a bit.

I’m currently in the hospital in Austin and will be for at least the next week. I was supposed to be going to Houston this week to get my second dose of my trial drug, but instead I need emergent surgery. The single vertebra (T5) of mine that has had cancer in it for a while has progressed and as a result is now compressing my spinal cord and causing some pretty scary symptoms like I can barely control my legs to walk and I have totally lost control of my bladder function. Spinal surgery sounds pretty scary and like something I would normally take longer to consider, but if I wait I am definitely getting worse and if I do it I have a shot at getting better. My pain is becoming less and less well-managed each day, I need oxygen because I don’t get enough on room air, and I need help with things like putting on my socks.

This also puts everything else up in the air. When can I get my next dose of my trial drug? This surgery only helps with the compression symptoms, but not with the growing cancer in my spine and this surgeon thinks that radiation will probably be the answer there, sometime between 2-6 weeks post surgery. I have no idea what recovery will be like, what my new QOL will be. I have been in an intense amount of pain lately so decreasing that would be incredible. All of this, we just have to do the surgery and see how recovery looks to get an idea. Oh, and while the pain is likely to improve right away, the bladder and gait issues will probably take longer and are tough to predict.

I am going to be coming home to many new medical devices. I had already bought myself a shower chair last week, as well as a recliner with a feature called lift assist, that helps me get out of the chair more easily. I think there will also be a hospital bed and maybe a new walker and maybe a bedside commode. Even my house is going to make me feel like a sick person.

My joy for this upcoming week is that I am in Austin and I am allowed a single visitor each day. They can come and go, it just cannot be multiple people in a single day. So my dad hangs out with me a lot and Wes can be here on the day of surgery. Thanks for following along, y’all.

Weekly Update #92

Things have been moving at warp speed over the past two weeks and there is so much to catch y’all up on! Last time I was getting ready to meet with radiation oncology and kind of bummed that it looked like my family would need to settle in Houston over the holidays to get this treatment in. I was trying to have good spirits about it, but it was a tough pill to swallow.

Well, that consult with radiation oncology went better than I could have imagined, and instead my doctor designed a plan that had me start this past Monday, December 14 and has me finish up on Wednesday, December 23. So I get to head home to Austin that day and be with my family for the Christmas holiday, which is really special to us. And, to add to my fortune, my dad offered/insisted on driving the 1700 miles from upstate NY to be with me in Houston, allowing my husband and daughter to continue their routine undisturbed. Since we’ll be reunited for Christmas, I really don’t mind spending this time apart with what feels like everyone where they are supposed to be.

Radiation has been tougher on me than I expected. I need to keep up with my anti-nausea regimen or pay the price. And I spend a lot of time asleep or somewhere between asleep/awake as I watch TV on the couch. My dad is an excellent caretaker; he’s attentive and takes feedback well. We’ve been bonding, learning about times in each others lives we don’t know much about.

In a continuation of my amazing luck, I got a call at the beginning of this week that I got a slot in a new trial. It’s a highly sought after spot because it is a new immunotherapy drug and this is the last one at the current dose. After I start there’s a safety period to see how I and the others in my dose cohort tolerate the drug before opening up slots in the next and final dose level. I love that the timing works out that I am already here in Houston for the screenings I need to go through to finish qualifying for the slot. I am a little sad that it means I will need to spend time in Houston the week of New Year’s, I was hoping I’d get to recover from radiation a bit longer, but it is not worth giving up this slot for. And this trial has a very low time commitment from me – after the initial infusion day I only need to stay one more day for a blood draw and then I can head home. I’ll need to do weekly visits for this first round, but then that’s it, I just show up for infusion every 3 weeks. This will be so much easier on my body than the travel required for that last trial.

Oh, which reminds me that I should mention my travel fix. I made it clear in my last post that I was not going to be driving myself to Houston, I was going to find another solution. I did indeed, something my lovely host Jacki suggested ages ago and I always ignored. It’s called the VonLane bus, a luxury bus that runs between the major cities in Texas. Currently they won’t sell seats next to each other and masks are required, so it feels as safe as possible in this climate. This isn’t an ad or anything, I just wanted to share the info for anyone curious.

That brings us to a close. My joy this week has been my incredible fortune in so many areas. I’m trying to appreciate every bit of it, including that today is my day off from radiation treatment. I hope you are all experiencing good things as well, my friends.

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.