June 15, 2023

10 Things I Miss


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:

aforementioned puppy ball in lap

And here's one that makes my heart want to explode.  I have three retired men on my street who walk every day around 10:00. And for the three years we have had Otis, he barks at them when they walk.  He is not nice to them.  He will not shut up.  But they've started coming and getting him and taking him with them on their walks now and I *think* he's learned to like them and he's also getting exercise and a break on long days and the sight of the three of them walking him is just so sweet and dear and one of many villaging moments that makes gives me so much joy.  (So, I did slip some gratitude in there, too.)

Isaiah 46:5  Even to your old age {leukemia days} and gray {missing} hairs I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you.

Thanks be to God.


  1. When the girls and I came in this afternoon, he was happy to see us, but not as much as usual. He kept looking for you. Every time he was in the garage, he would go over and smell your car. Inside he kept crying and looking at the door, waiting. SO SAD. We all miss you so much, including Otis. You are the center, the foundation. We look forward to getting you completely well and back where you belong.

  2. Thinking of you tonight and praying each day brings you closer to the 10 things you miss most. Love you, friend.

  3. Oh my, Chrissy...there are no words, only a lump in my throat and tears sitting ready to fall. You have always been so strong and such an inspiration. Prayers for healing, strength, peace, and comfort. But God ❤

  4. I miss you and hope you receive your 10 missed things in abundance sooner than expected (except #1…it went towards a good cause). Much love from the mountains. -K.Neal

  5. Praying for you sweet girl. Thank you for being so honest about this road you are on. For those of us with you, it helps us to know how best to talk with God! Love and hugs Ellen and Gene

  6. I don't have words but I have prayers and sending you my love and hugs 🤗

  7. One of the good things in hard times is noticing all of the miracles that come into existence around you, like those neighbors who are now walking your dog. I just love that, and I hope you experience many more heart warming and sustaining miracles along the way on your healing journey. Sending you lots of love and light every day, Chrissy
    Cindy C.

  8. I just love this photo of Otis walking his new friends! So many changes for all of your family members, four legged included!, and so many unknowns on this journey...that you are authentic in expressing the reality of NOW, and that you are beautifully holding all the reality you can bear and accepting it for what it is humbles me and encourages me in my faith. Thank you. And thank you for keeping us up to date on the reality you live out daily - tender moments, scary moments, happy moments, and the hard moments. You are loved big and you are prayed for big!

  9. We are continue to look up to the Lord and praying for your strength to bring recovery ahead. Your 10 things of list you had missed will soon be coming back to reality again. Thank you for sharing your updates and continue to bring inspiration during your discomforts. Praying for good rest and comfort tonight and every night in the Lord who will continue to sustain you from all.

  10. Your accounts and honesty are brave. Good for you. The hair thing was AWFUL for me, funny, that in the midst of everything else it remains one really a big deal. When it returns it will be lovely and soft! Best of luck!

  11. Prayers for you, my friends 🧡🙏

  12. Chrissy, here’s a remark from someone much older than you: From my perspective your #7, about the disadvantages of an ED admit to longtime hospital stays, omits—fortunately because of your enviable youth—an homage to the chin hair.

    To have been bereft of my deodorant was bad, for the staff eventually got me a substitute brand. But CHIN HAIRS!?! No tweezers available, and I was limited to my room and hallway so I couldn’t purchase a pair myself, at the hospital shop.

    This became my strategy; I made a deal with the swallowing specialists in Radiology: I let you look at my throat and drink barium; in return? You find a way for me to get rid of my CHIN HAIRS. They laughed, and did.

    Prayers answered.

    May all your prayers, and all of our prayers for you and family, be answered with grace.

    Amen, dear sister.

  13. I confess they were MY chin hairs. The jig’s up.


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