Chemo and More Fluid
Quick update:
I still have more questions than answers, but I have some tentative plans now. I’ve been on the phone all morning, trying to set some up a schedule for the next couple weeks. I’ve been having symptoms of an effusion, they started over the weekend: I wake up in the morning feeling like I need to take a full breath, as well as a weird tightness in my shoulder first thing in the morning (thoracentesis nurse said this is a common symptom with these effusions). So I’m going in tomorrow morning at 7:30 to have an ultrasound of my lung. If they see enough fluid to drain (if there’s only a small amount, there’s a higher risk of puncturing the lung), they will drain it right away. Otherwise I guess send me on my way to watch for more symptoms?? I’m not worried about this procedure. It’s not my ideal activity for a Tuesday morning, but it was simple and very uneventful last time.
We still don’t have blood biopsy results but my doctor advised that we move forward with some of the steps for having chemo. I had a “chemo teach” Friday, basically an hour with the nurse practitioner to go over the logistics of chemo. I thought, “how long can this take?! I’ll just show up and they do their thing, right???” Ok, that was pretty naive. She talked until my eyes glazed over. She ran through every common symptom I miiiiight experience, when in the chemo cycle it will likely occur, what percent of patients experience each symptom (and usually to what degree), and what medicines there are to combat the symptom. Some are OTC meds, some are prescriptions I now have in my medicine cabinet, some they will administer alongside chemo. For instance—achy/painful joints. It’s a possible side effect from the 1st chemo drug, usually happens 4 days after infusion, lasts about 4 days, is most commonly from the hips down, less than 1% of patients experience this one, and they will give me a steroid to combat it. She went on and on and on, didn’t use notes and was VERY clear that any of these are possible but I won’t experience them all. I do better in the long-run with more information, so I’m glad we went through it all! We also talked about how much and when I’ll be more immune-compromised and what precautions will be helpful.
Tomorrow at 11:20am (an oddly specific time) I’m going to have a chemo port put in. I won’t be under general anesthesia, just something “to make me sleepy”. Whatever that means. With 4 boys, I’m rarely NOT sleepy! Maybe I could bring the boys to the hospital and skip the anesthesia, they can put me STRAIGHT to sleep… Thankfully both of these are happening at the same hospital. So my plan is to arrive at 7:30 and camp out for the day. Because of the anesthesia, Jason can come with me, wait for me in the hospital and drive me home.
We have figured out how to get me to and from the hospital as well as the boys to and from school tomorrow. No small task but definitely not the hardest thing I did today. Please pray for me and Jason to have the stamina not only to process the medical logistics but also the boys’ logistics. (By the way, and you might have picked up on this, I like to slowly digest new information, I’m an internal processor, a big believer in logic over emotions, an introvert and don’t like to be the center of attention. All things that have made this year more challenging.) Pray for wisdom as we try to maximize our help while minimizing the changes to their daily lives. It’s difficult to know what is best for them. We cannot protect them from all of this, but we are desperately trying to communicate with them upfront about the changes, keep childcare help circles relatively small (for Covid/flu/stomach bug reasons as well as the emotional strain of adjusting to new caretakers) and make time for their questions/reactions to all of this. We are also looking into second opinions and clinical trials and tissue sampling options. That alone is a daunting task. Thankfully some of the doctors we know have helped us narrow down the options and next steps.
My first chemo infusion is tentatively scheduled for Tuesday, December 22, but we have flexibility to move that back a week. The NP said to plan to be at their office for 5-6 hours. I can eat, walk around, watch movies on an iPad, sleep, have pizza delivered. When she mentioned the pizza delivery Jason and I both laughed out loud, I thought it was a joke! But she said they have people do that. I can’t have visitors in the chemo room (Covid restriction), but will probably be there through lunch. So I guess I’ll bring my lunch or have it delivered. Crazy!
I think that’s about all for now. I want to post sometime soon (maybe while I wait for my pizza delivery next week) about the community that has surrounded us, given of themselves and helped us creatively tackle some of these days and decisions. We are often overwhelmed, and we also see EVERY DAY small miracles of God’s love and care and tenderness for us.
