Reminder to Self and Reminder to You

Be brave. Do it scared. Refer to the sections “Scary, Scary, Scary” (page 12), “Defending Your Weakness” (page 16), “Fear Is Boring” (page 19), “The Fear You Need and the Fear You Don’t Need” (page 22), and “The Road Trip” (page 24) in Big Magic by Elizabeth Gilbert

I'm Scared

And I hope it’s just because we’re so close to the end. I’m so scared that something’s going to happen and that my dad will die. It feels so real right now because I’m on my period and took my anxiety medicine a couple hours late, I guess. It makes me more susceptible to my worries, not that these things making me feel this means that the feelings aren’t real—only that it’s easier to fall down the worry rabbit hole.

My dad has stage four (“end” stage/most severe stage) diffuse large B-cell Non-Hodgkin’s lymphoma, a type of cancer that affects the immune system and the blood cells involved in the immune system. Despite the way stage four sounds, his prognosis is really good because of his age and health besides the cancer. All but probably one of his health problems (hypothyroidism) were due to cancer, so that doesn’t count toward health counting against him in his chances in beating the cancer if that makes sense. All the doctors he’s seen for the lymphoma have said he should beat this. The doctor who diagnosed him (who actually trained the oncologist who’s treating him) said that he should live DECADES after this. That’s at least twenty years. My father’s forty-seven. He should live until at least sixty-seven, but I pray for at least ninety anyway.

My father is finished with four out of six chemotherapy treatments (R-CHOP in case anyone who’s familiar with chemotherapy medicine is wondering). His fifth is actually this upcoming Tuesday (yesterday once this is posted). The only thing that makes me truly worried something is wrong is that one of his lymph nodes are swollen again. One of his symptoms of lymphoma were swollen lymph nodes throughout his body. His doctor is 80% sure the swelling is a lymph node doing its job and sequestering infection and there is only a 20% chance that it is his cancer becoming R-CHOP-resistant in which case we’d switch medicines, which I guess isn’t terrible but certainly sounds terrible—at least to me. The only way to know for sure is with another lymph node biopsy. The doctor wants to hold off on that for a while. Maybe that’s a sign he really thinks it’s swelling from infection and not cancer coming back, which is maybe what I should hold onto instead of this worry. One option the doctor did instead of the biopsy to find out why the lymph node is swollen is to treat him for infection and see if the lymph node starts to shrink, which it did. However, the doctor also said if it wasn’t back to normal size the next appointment after receiving antibiotics, he’d want to schedule a biopsy, but that didn’t happen.

My view from the emergency room exam room on Thursday night. Disclaimer: Despite a stage four cancer diagnosis, this is not our view the majority of the time, thankfully.
This is more often our view. 10% of the time this is my view because I've been in the kitchen doing housework today. Usually, I'm on the sofa to the left in there watching TV with him until around 3:30 when I pick up a kid or two from after school activities, start supper upon returning home, and get ready for bed. He starts watching TV around 7 A.M. I usually don't start until 9-10 A.M. when he wakes me up for breakfast. You can see his little bald head watching Spongebob when I took this picture.

My dad has also been to the emergency room twice since starting chemotherapy and for the same thing with the same result—fever over 100.4F and tests negative for infection AKA dangerous fever for a chemotherapy patient with no explanation. It’s frustrating because my anxious brain tells me that if the ER tests don’t pick up infection, then that is another sign that his lymph nodes are swelling from cancer instead of an infection. BUT my nurse mother did say that a fever is already an indication that he has an infection. Also, the ER doctor did say my dad’s throat looked red, which aligns with his sore throat. I asked my mom a lot of questions (actually in between typing this), and she said that not all infections are detected by the routine ER infection tests. Also, something like a sinus infection or sore throat won’t show up in blood work as an infection, so the signs are not pointing toward cancer yet.(:

I can’t wait for three weeks after November 14th. November 14th is his last chemotherapy treatment as of right now, and at the end of three weeks, he gets a series of CT scans to check for the cancer in his body. We actually have the second to last scan (every two chemotherapy treatments) Thursday so progress, progress, progress!

I think a lot of my worry comes from the fact that we’re so close to done, and I can’t seem to let myself enjoy things because I’m scared of them being ripped away from me. It’s like when you get so close to finishing something like an assignment or a semester in school or your last semester before graduation and you just want to GIVE UP. You’re so close, but you’re so tired and doubt you can go anymore. These are not the times to give up, including now with my father’s lymphoma journey. If I can’t be strong for me, I at least owe it to him, but I am worth it. I deserve to be strong and feel relief.

Like I said, I talked to my mom about being worried in between typing this, so if you noticed a change in attitude during this post, that’s probably where I stopped typing, talked to her, and came back.

Thank you for reading, and I hope I continue to post regularly again! It’s been hard lately, and I thank you for understanding.<3

Update: I wrote this on Friday night. It’s now Saturday afternoon. My dad’s lymph node starting swelling again almost back to pre-diagnosis, full-of-cancer size. My dad and I were worried, but seemingly at the same time, we also both remembered that his lymph node started swelling again after he finished his antibiotics and are therefore thinking even more that this is infection-related and not cancer-related, thanfully.


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