Weekly Update #94

Welcome to 2021, the 7th calendar year since my cancer diagnosis. I love being able to type stuff like that, to see how very long I have been facing this disease and the associated treatment. Somewhere along the way I stopped having an interest in resolutions for the new year. There is nothing magical about the date 1/1 that suddenly makes it possible for me to become a different person; if I want my life to be different I can start that process any time. That said, I see the value in assessing the previous year – what brought joy and sadness and fulfillment – recognizing that things that bring me sadness are not necessarily bad and productivity is not my ultimate goal. In my reflections I noticed how much time I spent short of breath this year and realized I wanted to reconnect with my breathing more this year. This means the deep breathing of meditation and it means breath representing life and it also means using my inhaler and it means pushing myself physically to where I am breathing hard and maintaining those muscles.

Speaking of breath, last week I had a bronchoscopy, a procedure to remove tumors growing into my airways. At one place where I had nearly 100% blockage they were able to reduce it by 95% (!!!), however at another location with the same near complete blockage they were unable to remove the tumor. The pulmonology team is not sure how much better my breathing will be overall, but I can already tell the difference in how out of breath I get doing daily tasks. The bronchoscopy made my trial team decide to push out my start date from last week to this week. I was really disappointed in that choice at first, but ultimately it was the right one; I really did need that extra time to heal and not wonder if I was feeling the way I did because of my new drug or the procedure.

I am still glad that I shared here that I was going to be getting my trial that day because a young adult cancer friend from Austin reached out that she was going to be there that day getting an infusion, and maybe I could stop by. I am so so glad she reached out and that I was able to go visit her. The infusion room can be lonely, especially now when you can’t have your normal people there visiting with you, and it was so lovely that the stars aligned for this meeting. Friend, I’m sorry I was such distracted company. It was the day after my procedure and I was pretty miserable with pain, so I wasn’t the sparkling visitor I aim to be.

Then I got to go home and be with my family again for 4 whole days! It was delightful to just be in a room with my daughter and/or husband and listen to them talk. Monday we had to return to Houston and got humbled. I took too long showering and when I got out and sat down to recover I coughed once and immediately started throwing up into the conveniently placed barf bag right next to me (I get them from the hospital a lot and stash them around my house). It took a couple hours before I was ready to dress and finish packing and face the car. Apparently during that time my dad pulled my husband aside to say, “It’s easy to forget how sick she really is,” which is heartbreaking to hear and know is completely true. Even at home where I do talk about feeling my worst, they mostly hear about how good I feel because I just don’t like to spend my time focused on feeling yucky.

Tuesday was my final pre-trial CT and my first pre-CT vomit. I am just not doing well on that front lately, y’all. Once it starts my appetite goes but having a too empty stomach for too long seems to be a trigger. And on top of all the coughing I have been doing lately it just destroyed my back muscles in a way that I am still trying to heal. So it worked out that I spent Wednesday sitting in an adjustable hospital bed for 10 hours getting my new trial med and having an entirely uneventful day. And since then I continue to have no noticeable side effects. So I can focus on dealing with the lingering ones from the bronchoscopy – coughing, pain from coughing, trouble sleeping because of the aforementioned. I’m learning how to use my new inhaler and nebulizer to make breathing easier and I don’t know yet if they’ll be permanent parts of my life or just get me through this time period.

My joy for the week is how snuggly my husband and daughter are the first 24 hours after I get home from Houston each time. I am always sore and tired after getting out of the car and just park myself on the couch under my favorite blanket. Having the people I love most come to me with their love helps revitalize me every time. I hope you have equal joy in your lives this week and for the year to come.

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 #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 #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 Post #71

Last week I had a CT scan and a follow-up with my oncologist to go over the results. Unfortunately, they were not what we wanted to hear – this line of treatment isn’t keeping me stable and it is time to move onto something else. The amount of progression I had isn’t much – there’s nothing new, lots of spots stayed the same size, and the ones that did grow didn’t have huge amounts of growth. But it’s enough that it’s clearly time to try the next chemo.

Also unfortunately, the next chemo is the end of the line. It is the last approved medicine for metastatic colorectal cancer. After this my options will be clinical trials and going back onto medicines I did progress on, to see if I can get a bit more time out of any of them.

There is one ray of hope – in January I had to stop taking a biologic called Cetuximab because I had developed a resistance to it. There’s some recent data showing that many patients who develop that resistance lose it with time. So next week we are going to test me to see if I am one of those patients. If so, the data further shows that it’s best to wait until September to start back on it, so while we are crossing our fingers very hard for that to work out, we do still need a treatment for this summer.

It looks like that treatment will be this end of the line chemo, called Stivarga. There’s a clinical trial on currently for Stivarga plus an immunotherapy drug, we’ve been trying to get me onto it all year, but they’re still not accepting new patients so it looks like my best option is to take the Stivarga on its own. My oncologist said there’s a chance we could get my insurance company to approve the immunotherapy drug for me based on the clinical trial data, so I could get the medicine without ever enrolling in the trial. I have no idea how likely that sort of thing is, but I appreciate anything that gives me hope right now.

As if there is not enough to be juggling with treatment, it looks like it is time for me to do more palliative radiation. I currently have 6 alarms set on my phone to handle the 11 different doses of meds I need to take daily to keep my pain tolerable. The pain feels like the bone mets that have been relieved by radiation before, so my oncologists are chatting and figuring out how to move that forward. I really hope it doesn’t take too long to get moving because this state is going to be hard to handle for longer than a couple weeks.

So, that’s all the technical info on how things are going. Then there’s the stupid feelings side. That side sucks. I have been hit incredibly hard by this news. The Stivarga and the Cetuximab are both drugs that I could take and stay stable on for years, buying me a lot of time, but I could also not be the patient who responds that way. I had been imagining a lot of years ahead of me lately, and those hopes have just been cut off at the knees. I want so badly to see and hold my friends right now and I can’t. And also I live in a country where black lives are considered less valuable than property, which is an incredibly fucked up way for anyone to look at fellow humans.

I met with my social worker on Friday and she gave me permission to take the weekend off from trying to feel my feelings, which was just what I needed. I am feeling better able to tackle it all today.

I have been trying to end lately with a bit of joy from the past week and I do have one this go around. Two weekends ago we reorganized some furniture to give me a sewing space I could use during quarantine. My husband is working from home in the space where I used to sew and his office building isn’t planning to open until at least October. The set up we made is so functional and I have used it to sew every single day for the past two weeks – something I never did when I was sewing in my office. It is bringing me an incredible amount of joy to be able to get back to making in a way that doesn’t hurt my body like knitting currently does. It’s also feeling very meaningful because the project I’m working on is a quilt I started almost 5 years ago for my husband. I want to make him and my daughter each a quilt so they have a physical representation of my love for them, and it is satisfying to be making progress on his at exactly this time.

I hope you all have found a moment of joy in the past week and that you’re coping through the ways things keep getting more intense across the world.

Not Like This

Last night I got the call from my oncologist – it is time for me and my family to go into self-isolation. I need to leave the house as little as possible, wear protective gear when I do, and disinfect when I get home. We should pull my daughter from school, whether it is closed or not. My husband should work from home if possible. It is scary and disappointing and inconvenient, but the primary emotion it brings up is one I haven’t accessed much during my cancer – anger.

I am angry at the idea that I have suffered through 4.5 years of cancer treatment to be threatened by a virus that is a mild cold for most. I am angry that it didn’t need to become a pandemic, but our global governments have mismanaged it into one. I am angry that my small joys are being stricken from me – going to see movies, midday naps while my daughter is at school, volunteer work at my cancer center. I have plenty of books and yarn and TV to fill the hours, but it is demoralizing to have no end in sight. And I think I am most angry that I am not even immunocompromised. These are all the right steps to take because the risk of things going bad for me is too high, and it shatters my illusion that I can live like a healthy person. I can’t count on good hygiene to let me do the things that are important to me.

I feel like I should close on a positive note, with a list of all the businesses and people who have been so generous and found solutions to keep some normality during this season. But I’m not ready to go let go of my anger and move to appreciation yet. Maybe by my normal update next week.

Weekly Update #59

Nearly a week has passed since my last update and I still don’t have my Lonsurf. Currently it is at pharmacy #3 who has spent 2 days trying just to bill it – apparently their system won’t let them charge my insurance and the copay assistance program. I’m going to make some calls to my insurance and see if I should just pay the $2K+ copay and then wait to get reimbursed or if that has some risks I’m unaware of. I am trying to ignore the little voice screaming, “You’re not getting any cancer treatment right now!!” and enjoy this mini-vacation from chemo.

I spoke more with my doctors about my trial options and we have decided to move forward with the one at MD Anderson. I’m currently waiting for an appointment to be scheduled there for me to talk to the team and sign consent forms. There is not currently a place for me in the trial, but they’re waiting on some paperwork that will change that in early March. If I could get started on my Lonsurf that would be great – it’s a 28-day protocol so I could get in one whole cycle before starting this trial. I hate feeling like I cannot commit to anything in the next week because I could be called to MD Anderson at any time. You get to give no input into your appointments there, you just show up when they schedule you and if you want to reschedule it can be a lengthy wait.

One of the other reasons I am annoyed at the wait for this chemo is that at this point I’ll start taking it in time for my last day of my two on-weeks to be the day of my half-marathon. So, it feels pretty unlikely I will be running this race. I could get a deferral to next year, but it’s also pretty unlikely I’ll be able to run it then. I want to send the organizers a link to the 13.1 miles I ran last week and ask them to give me my finishers shirt and medal anyway but I am pretty sure it doesn’t work like that.

The last thing I want to talk about is wallowing. I am still feeling low in my mood and energy and unsure how best to take care of myself. Are naps and french fries self care or a path to worse mood and energy levels? I asked about it on my Instagram this morning and received a lot of helpful information to chew on. I’m definitely still open to hearing more thoughts on the subject! I want to meet myself where I am, and make choices so tomorrow is as good as it can be.

Four Year Cancer-versary

Today marks four years since my cancer diagnosis. I was diagnosed in recovery from a colonoscopy. I remember waking up and asking my husband if we had any news and him saying we should wait for the doctor. I later found out that he had already heard the news, and I will be forever in awe of his strength in those moments between when he heard and when I did. I was still groggy when the doctor came in and explained that he’d found a tumor. My husband and I came home and watched one of the new seasons of Wet Hot American Summer, sweating because our AC wasn’t working. I kept getting phone calls from doctor’s offices to set up appointments. I didn’t know who they were or what the appointments were for or whether the order mattered. I was on the cancer assembly line at that point.

I have felt different ways on each anniversary. This year the overwhelming feeling is pride. Living four years with stage 4 colorectal cancer is a big deal. I’m still here, and my last scan showed things getting smaller. I am proud of what I have weathered. I like that I have chosen to respond by becoming softer and kinder. Cancer is so hard, but I think I handle it with grace.

I have not done this alone. I am grateful to my medical team and my non-medical community for their help and support getting through this journey. My family is incredible. They are going through cancer just as much as I am and they bring humor and love and empathy with us on each step. Thank you to everyone who is reading this for caring about me and my illness.