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 #91

I do not even know how to open this week because, yet again, there is so much. I’m going to talk about bad news and listening to yourself and amazing friends and tough choices. I don’t want to bury the lede so I will put right here that I learned this week my cancer is progressing and it’s time for a different treatment plan, details below.

The start of the week felt very frustrating and dramatic to me. My trial coordinator logged into work on Monday morning, saw that there was an order to move my scan to this week, and did her best to get me an opening that day. Unfortunately the only opening was 90 minutes from when she called me, and I was in bed, unfed, and unpacked. Oh, also, at home a 3 hour drive away. This lady is convinced Austin and Houston are 90 minutes apart, who knows why. I told her I would have to be late and she promised they wouldn’t turn me away. I hate being late, and especially to medical appointments like this where I know it messes up the entire schedule. I think it is so disrespectful to the staff who will be effected.

But, you know, that tricksy universe has some tricks up her sleeve. Because after my mad dash to MDA, I finish my COVID screening and take maybe 10 steps down the hallway before realizing I recognize the man walking towards me, it’s my cancer friend from home, Ryan! I knew he was going to be there that day for appointments, but never expected to run into him in this city within a city. He was done with his appointments and came and sat with me while I drank my awful CT contrast drink and waited for my scan. It was a serendipitous and much-needed delight.

The next day worked out the same way – Ryan and I had breaks in our schedule so we could have lunch together and he could come to my results appointment with me. Talk about **showing up**, I asked and he was there. As I mention in my opening, the results were not good, showing that my tumors grew and there were a few new ones. So, the trial was not effective in fighting my cancer and it is time to leave it. This is disappointing beyond the news my cancer is growing, which is very bad. I was about to reach the point in the trial where I only had to go to Houston every 3 weeks and instead we are back to square one with tests and uncertainty and continued travel and it’s so hard to face that again. It is exhausting, and I am already worn down with nearly no reserves. I need time to heal and make progress on my weight and I am not getting it.

On Tuesday after hearing the news I could not face the idea of driving home, and my host Jacki was happy to have me for another night. And then Wednesday I kept feeling unready and when it neared the time where I really needed to be on the road I just started sobbing at the idea. So I stayed another night. Finally I was ready to come home on Thursday. It is incredibly uncommon for me to prioritize myself and my needs like that. It felt so selfish and vulnerable to be stuck at Jacki’s and not just suck it up and do what I needed. Jacki offered to drive me halfway and meet Wes, and my amazing friend Chaitanya offered to drive down with her husband, then they could drive me home or she could ride with me and give me some company to ease the ride. Again, what generosity, I am just blown away by it.

Yesterday I got home and told everyone that nothing could make me go back to Houston next week. That I needed to be at home and I was going to put my foot down. And already I have caved and am probably going there next week. But I’m going to figure out an alternative to driving myself because it truly does hurt my health and I cannot afford it.

What has convinced me to go next week? A visit with GI radiation oncology to talk about some palliative radiation to my pelvic mass. It would help with the pain and discomfort I am having there as well as the constant bleeding. It is a tough call because I probably have to do radiation and then be off it for 2 weeks before I can start my next trial. But that means the radiation dates will be all around Christmas. There is a chance this is my last Christmas and how do I want to spend it? What memories do I want Marlowe to have of it? Of a normal family holiday at home? Or a holiday at the hospital in an extended stay hotel, showing her the lengths I will go to so I can be around for her as long as possible? There’s no right answer and I don’t know how to weigh it or what the costs to my health are for various choices and I don’t think anyone can tell me. So I am writing it here, and I am going to discuss it in therapy this afternoon but otherwise am going to loosen my grip on it and just see what happens.

My joy from this past week was definitely seeing how much people showed up for me in my moments of vulnerability. I am humbled by what generous friends I have. And I know that I only heard from the few I opened up to this week and had I shared more widely I would have had even more amazing offers. Oh, and there was literally a present waiting for me at Jacki’s house when I got there that a friend figured out how to get delivered to me there. Truly, I am fortunate to be so loved.

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 #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 #78

That esophagitis was really tough to get through (and I still have to take a Tums first thing when I wake up), but I finally recovered enough to start on my new chemo last Tuesday. This chemo has yet a different dosing schedule – I take the pills everyday for 3 weeks and then get 1 week off. For this first round we do a dose escalation – I am taking 2 pills right now and then I’ll take 3 pills for a week and then 4 pills for a week. Four pills is supposed to be the dose, but we’ll see very clearly if I do better at a different dosage and be able to change it if we need to. So far at the lowest dose I feel just fine, no noticeable side effects at all.

I am struggling with an issue that is new to me – my appetite is too low. I spent the end of last week feeling like I was fighting off a cold – chills and aches and just feeling crummy. And then I realized that I perked up each night after dinner. And that even though the esophagitis is over and I’m eating again, I am still losing weight. I am just not hungry, but eating until I am full doesn’t give me enough calories each day. I have to admit that I wouldn’t mind losing some of the weight that I gained on chemotherapy – my wedding band doesn’t fit currently and I would love to be able to wear it again – but this isn’t the way I want to go about it. I have reached out to my nutritionist at my cancer clinic to get her advice on how to proceed.

I’ve been keeping this close to my heart, but I guess I finally feel brave enough to share. I had a pitch accepted to a digital sewing magazine and wrote an essay that will come out in their September issue. I won’t share the topic yet, but writing it was intense and I am really proud of what I created. I will link to it when it goes up.

My joy this week is Sir Koff-A-Lot, a stuffed bear I was given after my lung surgeries for me to clutch when I cough. I have been coughing the past couple days and have been holding Sir Koff-A-Lot to my sensitive ribs to lessen how much they hurt. I’ve started sleeping with him at night because he feels very comforting.

Weekly Post #76

I’m now just over halfway through radiation and to be honest, I am disappointed by the effects so far. I have been able to drop the number f pills each day at my current dose, after trying over the weekend to drop to a lower dose and failing. I was really hoping that after these two weeks I would be entirely off my pain meds and that is definitely not going to happen. If I remember correctly, the radiation keeps working for a while after my treatments stop, so the pain may continue to decrease over time. And I am starting a new chemo treatment next week, so perhaps that will also kill off some of what is causing this pain and allow me to lower my pain meds. I do want to appreciate, though, that on my current combination it works well enough that I can sleep through the night, I am with it enough to be able to drive, and to interact with my family during the day. It is a significantly better quality of life than I had a couple weeks ago.

I had a really helpful meeting with the dietician at my cancer center last week. I need to take my chemo with a meal that is fewer than 600 calories and less than 30% fat. I know how to calculate the calories part but not the percent fat. She gave me info on how to do that math if I want to, and also helped me get the perspective that the drug won’t stop working if I eat a meal that is 31% fat. This is a guideline to tell me the best type of meal to take this medicine with. I’m such a rule-follower by nature that I often need a little help to remember that often the numbers in the rules aren’t magic, they’re just something someone picked. She also sent me some guidelines about esophagitis, which is an expected side effect of my radiation (though I’m not getting it yet).

I wrote last week that I wanted to try meditating through my radiation sessions to help me walk out of the sessions feeling more calm. My one attempt was pretty awful – without the distraction of a podcast it is incredibly uncomfortable to hold the position I’m in for radiation. I am realizing, though, that I am not longer walking out so stressed out. Maybe it just feels routine again now.

My joy for this week is family book club. My daughter initiated this earlier in the summer, and we all meet weekly to discuss our (her) chosen book. It is incredibly fun to hear her opinions, to discuss the probing questions my husband brings up, to compare our ratings and perspectives on the book. For this upcoming week we are reading Ghosts by Raina Telgemeier and I cannot wait to hear her thoughts on this book that has more nuance than some of the others we have tackled.

Weekly Post #70

As often happens, I missed updating in the middle of my chemo cycle. This one wasn’t too bad, no nausea and the fatigue didn’t hit hard until relatively late. Unfortunately it was still a pretty unpleasant two weeks.

The pain I wrote about last time only got to not-needing-constant-pain-meds level within the last day or two. I don’t know why it got so very bad or was so hard to recover from, so no lessons learned to take forward. I have been doing exercise that focuses a lot on alignment and using muscles for what they’re supposed to be used for, I am hoping that long-term that will prove to be useful in pain management. One of the hardest parts of the pain is that it is ramped up by my knitting. I really really miss it. Knitting makes me feel relaxed and creative and allows me to make clothing I love and not having that outlet right now is sad.

I upset my stomach on Thursday night and spent the entire long weekend trying to recover – mostly by laying limply and staring at screens. I’ve watched so much TV this month and have been grateful for the escape.

One of the things that has been interesting about the pandemic is seeing the world go through some experiences I have had as a result of cancer. The current feeling seems to be that we’re all done with this and yet it’s not over yet. I have hit that wall plenty of times in treatment, of just wanting to step off the ride for a minute and have some normal time. But you can’t, it’s not an option, and you have to find a way to bear it. My family of introverts spent a lot of time this weekend in separate rooms; I think we all needed to meet only our own needs and not deal with another human for a little while.

This week is a couple telehealth visits and recuperating from chemo. Next week I have my PET scan (ugh) on Monday and get my results on Thursday. Last time we talked there was a chance I would move to a trial at MD Anderson after this scan. I’m curious to hear what my doctors think of that risk right now, and what the plan will be. I wonder whether the trial runners would be open to giving me a slot here so I didn’t have to expose myself to travel to participate. We’ll see what I hear next week. Hope you’re well, readers.

Weekly Update #15

Finally I have started my new chemo regimen. I am so glad to have to underway, and am pleased that it is much less difficult than I feared. My previous regimen is considered to be fairly light, as chemo goes, so I don’t get any meds to tackle side effects as a matter of course; I have them on hand to take as needed. This one is known to be harder so I get pre-meds before the infusion starts, as well as a morning and evening anti-nausea drug. I’m doing a lot of sleeping and my appetite is low, but I am not feeling any nausea and I can be awake for a few hours.

My dad is here to help out this week and that has been incredibly helpful. He’s taking my daughter to and from school, cooking and cleaning up, running bedtime. My whole job is to take care of myself. It’s a real relief to be able to offload such a huge amount of work to someone else. It makes me think about the offers for help that I don’t take people up on. One reason is that childcare is where we could use the biggest help and my gal has a small circle of places she feels comfortable. The other is that it feels like a lot of work to organize help. Having a trusted family member come in and take over mitigates both those issues.

I asked a whole ago what you thought about hearing interviews from some of people in my life because, but I haven’t yet worked up the nerve yet to ask any of them. I’m still hoping that I do!

Finally, the link to my song is up! Ta-da! A couple neat details about it – the piano you hear is played by my daughter, and the line “I can bear the wait/weight” has my voice singing along with the professional. This song is so much more special and amazing than I dreamed and I am excited that now comes the sharing part.

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.