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.