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.

2 thoughts on “Weekly Update #91

  1. Amidst the giant misfortune of having this devastating disease at such a young age, it is good to hear that you are feeling the love that surrounds you..You are surely helping others by sharing your story and are doing great at finding your way. Virtual hugs from an internet stranger. ❤️

    Like

  2. A difficult time for you but somehow, you manage to get through and also to notice the love and beauty around you, which is inspiring for sure.
    Thank you again, for your writings.
    I hope for a better week and more options.
    Much love to you and your family.

    Like

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