Chemolog: day 196

The scans 

Sorry, I left you all in a cliff hanger! My primary oncologist replied that I should sit tight and wait on the scans and not expedite things, that I would get all the radiation exposure without meaningful information if we did this earlier. So I’m waiting. The symptoms have basically stayed the same: still feeling consistent back pain but at least it’s not worsening. And I’m still sleeping too much, 9-11 hours/night. I’ve been unable to wake up before 7am which is very out of character. I’ve heard the effects of chemo can stick around for 6 months, so some lingering poison might be part of it. Also I’ve had mild underlying sickness from the kids. So I’m going to lay low and trust in the 4 aligned opinions for now. I’m picking my battles and laying low for now.

Additionally, about 4 days ago I got an ingrown toenail on my big toe. It’s been pretty painful but not a big deal. I emailed my oncologist, asking what I should do. I finally got a reply today. Though I’m not neutropenic I still need to deal with this. The main issue is that lymphoma is a problem with the immune system. As such infections need to be taken seriously, even if I’m not currently neutropenic (which I’m not). So today I’m headed into urgent care to see what they can do.

And I got the upcoming scan setup. I was able to finagle a bit and it’s scheduled for 3/5, right when I get back. It’s like something out of a bad movie. I can see it cinematically: lush Hawaiian landscape fades out as the camera pans across the shimmering ocean, gently waving palms at dusk. Cut to clinical scene with harsh fluorescent lights glaring on me, as I’m dressed in an ugly medical gown.

Bad movies

Glued to awful movies

Over the weekend the kids had friends over and they watched ‘Ninjago’ (it’s awful on so many levels – I don’t have the patience to discuss here). I can’t believe I’m a parent that allows this stuff in my house. I cozied up with them, eating my homemade popcorn if only to snuggle a bit. One of the subplots revolves around a tense father and his son relationship, akin to the one in Star Wars. When it was over the other kids went to the room but Lev stayed back, lying on the sofa. He was obviously holding back tears, his tiny body has no room to hide large feelings. I sat with him for a few minutes rubbing his back. He put his arms around me, squeezing hard, his smooth cheeks on my neck. Then he started wailing. We probably stayed for 10 minutes like that. He didn’t tell me what it was about, but I know it pertains to my health; these feelings and concerns have to come out somewhere.

After that episode it occurred to me there hasn’t been much crying or discussion around my condition lately. We’ve focused on nuts and bolts (e.g., daddy goes to the hospital today, daddy will be tired for the next few days) after the initial conversation. I’ve tried to keep things smooth around the house to whatever degree possible and to avoid putting unnecessary anxiety on them. Now I wonder if that was the right move, or if it’s just percolating inside them. Maybe we should talk about it more? The last thing I’d want is some unhealthy long term response because we smoothed things over in the short-term. Monitoring this vigilantly.

And to be clear, sadness is a very appropriate response to life. Even if things are great. That doesn’t mean one should mope! But in my opinion reflecting on it helps bring gratitude for what is, and a sense of urgency make things happen. We should strive to be well-calibrated to reality. I appreciated Lev’s openness with his feelings as he struggles to understand them. It seemed really healthy.

Helping others

And it’s been nice to continue getting some feedback on the blog (it’s emotional rocket fuel for me to keep it going). Seems to be causing some nice ripple effects and I’m pleased that this crazy journey can in some way be helpful to others. Here’s my favorite piece of recent feedback. Randi – thank you for sharing this and thinking of you as you get deeper into treatment (and hope this gives you a small boost for whenever you catch up!).

I was connected to your blog through my massage therapist in Rhode Island who is friends with your sis, Ilana. *Thank you* for your blog and for your intimate thoughts and feelings. It has been so comforting and validating for me. Must admit that I haven’t gotten too far in the reading. I am at September, 2018… Oftentimes I will read, reread and read again because the words resonate so much with me. So because I am not at February, 2019, I am not sure where you are in your journey, and I don’t want to “cheat” and read ahead. I hope you are doing OK. You are helping fellow cancer patients, like myself, to *push* ourselves on a spiritual, emotional and physical level. On days when I just don’t feel like pushing, I think of you.

Meantime I’ve joined a few Lymphoma Facebook pages to both get some questions answered, as well as to support others going through this. All the info I’ve been learning seems to be coming in handy to that end. Knowledge should never go to waste.