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.

4 thoughts on “Weekly Update #90

  1. Dear Christina,
    I so appreciate you sharing your journey with this disease. I look forward to hear from you and when it comes up, I always stop what I am doing and read it.
    I agree with you in that it is important to get this stuff out and enjoy the burst of energy that happens for you when you do. Your daughter is amazing. So cute. Please keep going in whatever way you can and know that there are real people out here caring for you in whatever way we can from a distance. It has to matter right ?!
    Love to you,
    Janet

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  2. I was thinking of you earlier today wondering how you were doing. I’d like to also encourage you to write more if it makes you feel better. I’ll always be here to “listen.”
    Maryse

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  3. Thanks for being brave and having this blog. It is hard to put these things to words but most people have no idea what a terminally ill patient is going through. My best friend went through something similar. He was always frustrated that no one understood his life. Sending you much love, Latifah Latifa

    Like

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