10 Things I Miss:
10. A chunk of bone marrow out of my right hip. I don't actually miss it, but it's gone. Everything went well with procedure today. I was more awake (as in, I was awake) than I anticipated but some long slow breath prayers ("God around me, God within me") got me through with really no pain; just discomfort. And it was pretty quick. We'll get results around 3:30 tomorrow afternoon. Whatever they say (Choose Your Own Adventure Plan A or Plan B) we just want to do whatever we have to do to get to REMISSION. If that means another month here instead of two weeks, then sign me up.
9. The outside world. Because I was admitted with COVID (Thanks for catching my leukeumia, COVID!), I've been on a 21 day lockdown. Getting rolled down to CT today for the procedure was the first time I had left these four walls since I was admitted. It was like a field trip! But on June 19, my 21 days will be over and they can move me to a bigger room and also I can start taking my pole for walks around the unit. I'll be able to go to the art and rec classes and just explore a bit further. I am so excited. And your texts and messages with glimpses of what you and your families are doing in the outside world bring me cheer and help me imagine what's beyond the walls, so keep those coming.
8. Movement. Before the diagnosis I averaged at least 11-12k steps a day and I was doing yoga 3-4 days a week and swinging kettlebells. Now, I don't break 2k steps a day. Last week I had 10k for the WEEK (not the day!). My muscles and joints feel the hours of sitting in bed and I'm stiff and just miss moving my body. I can't wait to be able to start increasing that step count again, bring my yoga mat to a bigger room and start building just a little strength back.
7. My stuff. Since this was an emergency transport admit straight from the ED, I did not get to pack for this vacation. Every day there's something I think of I wish I had, but the effort to explain to someone in my family where I think it might be so they can find it and ferry it over here is getting old. My room is cozy, I have all I need, but I miss the comforts of home and having all my stuff nearby.
6. Regular work. Because I've felt pretty good, I've been able to keep working from the hospital. But since I can't really ATTEND any of the events that are scheduled this summer, "work" looks like typing out super detailed sub plans so someone else can do my job for me. And it looks like Zooming into a staff meeting instead of sitting around the table. And it looks like asking people to do stuff for me that I wish I could be doing myself. I'm grateful I can keep working and I'm grateful for amazing team of staff and lay leaders who will carry the baton beautifully. But I miss regular work. And I wish I could be at the things and do the things myself.
5. My bed. I really love my bed. It's a good mattress. I like my sheets. My pillows fit just right. I sleep good in it. I've brought pillows and blankets and quilts and all kinds of things from home to try to make this bed feel good, but guess what? It's a hospital bed. It's awful. I miss my bed.
4. Simple showers. Showering is like my big main event of the day. I have to unhook from my IV pole which sometimes requires very strategic planning between blood products or meds as to when I can take a break. Then, I have to wrap my PICC line up in plastic so it doesn't get wet. Then I shower (in a shower that is not my shower and water gets all over the floor because the curtain isn't big enough). And then after the nice hot shower I have to dry off and wipe down my whole body with these antibacterial wipes for infection. So then I'm cold and shivering again. Get dressed. Try to do something with this short hair I don't know how to handle. Get back in bed. The whole thing wears me out and I often need a nap afterwards. I miss simple showers.
3. My hair. I miss my long hair. I still just can't get used to this haircut and it just doesn't feel like me. And as of today, it's starting to fall out. Just more plentiful single strands and maybe an occasional small chunk, but I can tell it's starting. So pretty soon I'll literally be missing all my hair. Hard stuff.
2. Enjoying food. Eating (sorta like showering) is a chore. I have to be really intentional to make sure I even remember to eat because I have literally no appetite. And then food doesn't really taste quite right. And I am still struggling with reflux so I'm having a hard time getting anything down that's not just soft or liquid foods. So lots of yogurt, soup, applesauce, protein drinks, etc. I love food more than just about anything in the world and not being able to enjoy it - and for it to feel like LABOR - is a bummer. Also, I as a subcategory, I miss coffee. I'm always a 2 cup of coffee in the morning with my quiet time and I can't stomach the thought of a single sip of it. I miss wanting coffee! We're going to consult with speech and see if I need a swallow study or something. And it's improved a bit with reflux meds, but I think eating with chemo is just not fun.
1. My family. I love my family even more than I love food. The girls got back from the beach today, but we're questioning whether they have any symptoms and whether it's safe for them to come visit or not. It feels a little pandemic-y all over again but with MY PEOPLE. I miss my people. They miss me. It breaks my heart. And when I say I miss my people, I also miss my puppy. I can almost feel Otis' soft ears and his neck skins and the weight of him curled up in my lap. I really miss my family.
This list is to balance out all the gratitude. There's plenty to be grateful for, for sure. I'll go back to appreciating all of those, I promise. But I want to be authentic and real, too, that this is not fun or easy. I can try to have a good attitude, but the reason for that intentional attitude is that there's a lot to overcome. So, I want you to hear that, too.
Tomorrow mid-afternoon for additional bone marrow biopsy results and a plan. If the plan is more chemo, we'll probably start it right away tomorrow.
For photos let's just share all the Otis. He's the cutest guy in the world. I mean, seriously: