“Holding space for another person is incredibly profound. When you hold space for someone, you bring your entire presence to them. You walk along with them without judgment, sharing their journey to an unknown destination. Yet you’re completely willing to end up wherever they need to go. You give your heart, let go of control, and offer unconditional support. And when you do both of you heal, grow, and transform.”
I saw this on a website a few months ago:
“Imagine you’re going about your day, minding your own business, when someone sneaks up behind you…
You feel something press up against the back of your head, as someone whispers in your ear.
“Sssshhhhh…. don’t turn around. Just listen. I am holding a gun against the back of your head. I’m going to keep it there. I’m going to follow you around like this every day, for the rest of your life.”
“I’m going to press a bit harder, every so often, just to remind you I’m here, but you need to try your best to ignore me, to move on with your life. Act like I’m not here, but don’t you ever forget… one day I may just pull the trigger… or maybe I won’t. Isn’t this going to be a fun game?”
This is what it is like to be diagnosed with cancer. Any STAGE of cancer. Any KIND of cancer. Remission does not change the constant fear. It never truly goes away. It’s always in the back of your mind.
Please, if you have a loved one who has ever been diagnosed with cancer, remember this. They may never talk about it or they may talk about it often. Listen to them.
They aren’t asking you to make it better. They want you to sit with them in their fear… their sadness… their anger… just for the moment. That’s it.
Don’t try to talk them out of how they are feeling. That doesn’t help. It will only make them feel like what they are going through is being minimized. Don’t remind them of all the good things they still have in their life. They know. They are grateful.
But some days they are more aware of that gun pressing into the back of their head and they need to talk about it. Offer them an ear. ❤”
To continue with the above analogy, I’d say that most of my days are spent with just an awareness that there’s someone behind me. And today would maybe be one where I felt the touch.
I’m fine. Really. But I had a follow-up kidney ultrasound this morning. It’s only because way back when this started in 2017 they noticed a small nodule on my kidney which is “very likely a cyst.” Cysts are very common and most people have them but have no reason to know they’re there. But with my history, my dr wants me to get annual checks on this to make sure it doesn’t change size.
The tech doing the ultrasound said she does so many of these for people monitoring something that was a finding from another test. She actually said that this morning was “full of kidney ultrasounds” for her.
I know it’s nothing. I know I’ll get a call in the next few days that says it’s fine and I’ll just do the same thing next May… and every May forever. But, as much as I hate to admit it, the thoughts crept in today and we’re unsettling.
Thankfully, my day at work was good and I came home to this beautiful weather- perfect for hammock laying, trampoline jumping, dinner outside, and yard work. Thank you, God, for the sunshine and the peaceful evening.
I think this has been the longest I’ve gone without posting an update. Sorry, everyone. That also means there are probably a lot of random things to talk about, but I’ll keep it as brief as possible.
Physically I’m doing really well. At the end of January, my surgeon stopped adding saline to my expanders because my skin won’t stretch anymore. So the size I am now is about the size I’ll be forever- a solid B! I’ll take it!
As planned, I have to stay at this point for 6 months then have one LAST surgery to replace the expanders with implants. So that surgery will be on July 19th. That’s just about 3 months away. I can hardly believe that I’m just 3 months away from the last step of this!
I’m gradually getting used to this body now. My chest and back are uncomfortable all of the time, but usually not painful. The hormone blocker that I have to take for at least 8 more years still causes joint pain, so I feel sore and stiff a lot. I’m trying to stay as active as possible to help with that.
In the last few weeks:
– I had a follow-up ultrasound to monitor the reactive lymph node under my armpit to reassure me (again for the 4th time) that it’s not malignant.
– My radiation oncologist officially discharged me from her care.
– My general surgeon said, “although you’re the highlight of my day, I don’t need to see you anymore”! (Since I have some attachment issues, I asked if I could come back in a year just so I can hear another person tell me I’m healthy.)
– The lymphedema on my right arm/hand is not too bad. The reconstructive surgery broke up some of the scar tissue that was impeding the lymph flow. So now it’s not nearly as swollen. Three of my fingers are large and my arm gets tight and uncomfortable sometimes, but nothing that a night of wearing my compression sleeve/glove can’t help.
Personally, life continues to be a constant mix of laughs, joy, frustration, peace and two pre-teen girls. Rob is busy training for the Akron marathon in September. The girls are busy with school, dance, and friends. We’re getting out to enjoy the nice weather. Work is going well but busier than I’m used to.
I’ve had a couple of sweet days with extended family that I’ll always remember (Toya Groves and Pat Smith- thanks to both of you for two special days.) I’ve also been spending some unexpected time with friends from home- time that is always cherished.
All in all- life is good. Some days the sun is shining and we feel the warmth on our skin. Some days it’s harder to feel it, but we know it’s there because we see the light. One of the greatest blessings we have is the light from the son.
A few important things happened recently:
First, one that requires a moment of pause. My friend who I asked for prayers for a few weeks ago has passed away. She did not respond to the treatments for her cancer the way we were hoping. Laura Ritter Allio was laid to rest today as her husband, 2 yr old son, and hundreds of people said goodbye to her.
I’m learning that this is part of my life now. Being involved in this world has introduced me to so many people I would otherwise not know. Laura was one of them. I’m thankful for meeting people and making instant connections with fellow “pink sisters.” But it is hard to become friends with people who are called to heaven sooner than seems right.
Bookending my friend’s sad news is two good things on my part. I know Laura would not want her death to take any joy from my good news, so I’m allowing myself to feel excitement for the following things.
Friday was my last follow-up appointment with my radiation oncologist. She’s an extremely nice doctor who always made me feel good about the treatment, but I am happy that I no longer need to see her. As I was leaving her office, she gave me a hug and said, “Have a long, happy, healthy life.” (Yes, ma’am… I will.)
And today marked the last day of the drug trial for me. It’s been 54 weeks that I’ve taken the oral chemo. The study is to determine if taking it for one year after treatment helps to prevent recurrence. So another item on my treatment list can be crossed off. And I plan to be one of the study participants to really skew the results in the positive direction (you know, like it never returns and I live as long as my Grandma Caldwell.)
Today also happened to be the day that we had a special delivery from my Aunt Dolly- some surprise chocolate hedgehog treats that came in the mail. It was perfect timing (I’m noticing a pattern with me saying that…). I’m so thankful that I am able to keep moving forward and making progress with my health. These seemingly minor things are pretty major in my book. 🙂
The sting hurt a little less on Sunday. It was January 20th, which was the day two years ago that I first heard the word “cancer.” Last year, on the 1 yr anniversary (?) of the date, I was pensive and melancholy all day. This year, I knew the date was approaching but didn’t think about it until that night when I was getting ready for bed. And instead of the PTSD feeling, it was a feeling of joy and gratefulness. I’m here. The disease is gone. And I’m 2 years into my 5 year mark to be considered “cured.” And hey, I’ve got boobs this time around!
It has been an absolute blessing to be home this past week and preparing (mentally and physically) to return to work.
Yesterday I was home while the girls had off for the MLK holiday. We took them to the Science Center because it’s free on MLK day. Which also means its crowded full of everyone near Cleveland who can enjoy the science without the cost. Olivia is 11 now, and at first her interest seemed questionable. I was so surprised because she’s our science/space lover and she was wandering around like nothing was too interesting. But just before I started internally weeping because I thought my daughter had outgrown the facility, she was smiling and laughing and playing with her friend. Then I realized- it’s the 11 yr old phase where they’re too old to be kids but too young to be teens. So maybe she was resistant to the idea of playing with things that little kids like. And that feeling was probably heightened because she had a friend with her. But by the end of the day, the intrigue of science beat out any awkward feelings and they were laughing at their funny images in the mirror, playing sounds and music on a variety of different objects, and pulling each other’s arms to look at the next cool demonstration.
Today is my last day of medical leave… and it’s a snow day for the girls!!! Perfect, right? I get to be home with them on the snow day for the first time in forever! There’s not much harder than leaving for work on snow days when Rob and the girls are home. I get so jealous sometimes that he “gets” to be home. And sometimes in the dead of winter (after several snow days have been in the books) he gets jealous that I “get” to go to work. 🙂
We’re getting ready to brave the temps to go sled riding in this powdery fun. I can’t pull a sled up a hill, so I hope the girls are ready to help. And it hurts a lot to shiver, because those lat muscles that now come around my sides to the front are still tender and hurt when they tense up. But it will be worth it. Because I am here and healthy enough to make these memories with them. And with the anniversary (?) so fresh in my mind, I feel an extra sense of joy about it today.
This past week was definitely better than the previous one. My aunt is home from the hospital and I’m feeling a little better every day. I had a whole post written about how if felt to have xrays at the ER the week before, but it’s too long and boring. Just remember that simple procedures for cancer survivors are always more scary and worrisome than they might let on. Every simple procedure requires a “prepare for the worst but hope for the best” kind of offense.
Moving on from that though… the bronchitis is improving, with just a slight lingering cough and wheeze. Last week I drove to the dr in Cleveland for another fill in my expanders, but the surgeon did not want to do it while I wasn’t feeling well and still on antibiotics for bronchitis. So she postponed that procedure one week. In turn, she also extended my return to work for one more week. Talk about a sigh of relief- I didn’t know how stressed I was about returning to work not feeling well, until she gave me that time to recover. What a gift that has helped me physically and emotionally. One more week of getting over this bronchitis and building up my endurance to get through a whole day.
Part of building up that endurance includes keeping a more regular schedule during the day- getting up early with the girls and staying awake (it sounds so easy, but…). I also need to get out of the house for various errands and appointments. Last week, I was sure to include some lunches with friends- and they were perfect. Thanks to Hannah Springer, Amber Pierce Norman, Tana Kura, and Barb Kline for the company and encouragement last week. You all have touched my life in very important ways, and I treasure the time we spend together.
I also read a great book- “The Life We Bury”. It’s a very quick read if you want to escape for a few days. Getting my brain off of my own medical issues and into some entertaining fiction was perfect. Thanks for the suggestion, Trisha Brunazzi.
So just a few additional things about surgery recovery:
I’m able to sleep a little better now, though nothing near what I used to. I don’t need so many pillows and I’m sometimes able to lay on my sides now (But if I do, I’m sore when I wake up).
I notice the absence of lat muscles most when I try to open dresser drawers. 🙂
Apparently, when I’m cold and shivering, my lat muscles tighten up a lot. And now that they are placed under my armpits through to my chest, I get really sore on my sides when I shiver. It’s actually pretty painful so I’m so thankful for my remote start in the van.
Most interesting to me is the feeling right after a fill. They add saline to the expanders so that the skin and tissue slowly stretch out a little each time I go. And right after they do it, my back aches a LOT. I realized it’s because my lat muscles are being stretched, but the nerves are still intact in my back. So it feels like I have sore back muscles even though the muscles aren’t there anymore. It’s crazy cool.
This week’s goal is to find the right balance of rest and activity so that I get rid of the cough for good and feel ready to work next week. Olivia had her own issues with strep throat and an ear infection over the weekend, so I’m thankful to have time to get this house disinfected and back to normal for us. Feeling much more optimistic about things now. 🙂
Here’s hoping this is the start of a better week than last week, which ended up being a mix of several different things weighing on my mind and heart.
The pastor from my church growing up passed away. He was always a guy to look up to, even though we didn’t go to church regularly. In discussions about him this week, two descriptions really stand out to me: “It always felt good to be around him.” and “His heart had room for so many people”. What a great legacy to leave on this side of heaven, isn’t it?
My aunt is sick and in the hospital with an infection. I’m hopeful she’ll be fine soon, but it’s another concern on my mind.
An acquaintance I’ve met who is still fighting her metastasized breast cancer has had a really rough few weeks. I feel for her so much. Please pray that the treatments she’s seeking out of state will be the perfect mix of what she needs to fight that awful disease.
I learned that my friend’s son-in-law had passed away right before Christmas after his own fight with cancer. We had been praying for him and I was SO hoping he would be around to see his small children grow at least a few more years.
It was also Allie’s birthday last week which always reminds me how much I miss her (and still feel some “survivor guilt”) when I think about her.
As for me, my surgery recovery is going well. I’m not on pain medicine and actually don’t feel much pain from the surgery anymore. But I do feel uncomfortable all of the time. The discomfort really affects my sleeping because I am constantly readjusting my position in the bed or recliner. I’ve had pillows situated in every position imaginable… and then some. 🙄 I take a muscle relaxer, ibuprofen, and melatonin before bed. Nothing seems to be the magic I need. And there is no remedy for post menopausal night sweats (though I have figured out the best combination for “conversion pjs” now. It’s a mix of all things adjustable and layered.)
Side bar- You know the song “Blessings” by Laura Story… “What if a thousand sleepless nights are what it takes to know you’re near?” I lay in bed and think- I know He’s near… I don’t need to reach a thousand. 😕
Anyway, in addition to surgery recovery, I’ve had a cough for a couple of weeks and was being patient to let it “run its course.” But on Wed and Thurs I started wheezing and Friday I was short of breath. My primary dr. couldn’t get me in until this Tuesday and I knew I needed something before then, so I went to Med Express. That dr said that I needed to go to the ER so they could do chest xrays. (Believe it or not, that was my first time to either of those places.)
In the end, I was diagnosed with bronchitis. Which is a source of frustration and the cough is another hit to my chances of getting a good night’s sleep. But I’ll take that diagnosis over my worst fear any day. Tomorrow I’ll share more on why that dr appt was so emotional because I think this post is probably already too long.
I didn’t even realize how heavy my heart was with the combination of all this stuff until later in the evening when Rob said a package came in the mail for me. A box from Shutterfly? I hadn’t ordered anything from Shutterfly. And addressed to Shelly Caldwell (my maiden name). How curious. I opened it to find a puzzle of a collage of family pictures, including a picture of my Grandma and quote from a song she always sang. I opened the gift, which in turn opened the flood gates.
It was sweet and perfectly timed- a reminder of good times from our summer family reunion in June. Of how lucky I am to have the supportive family that I do and to watch the next generation of cousins getting to know each other and make their own catalog of memories. Thanks, Jenn Javor-Hopwood. ❤️
As I was turning the box around all directions to figure out who sent the package, I caught a glimpse of the tattoo on my wrist. It did it’s job (as it frequently does) to remind me to “be still”. To stop worrying so much about the future. To be present in the “now” and thankful for all that is going right for me now. Thankful that it’s just bronchitis. Thankful that I have such supportive family members. Thankful that God’s timing is perfect for what I need. Thankful I knew that pastor who introduced me to God as a child and truly had “a heart for so many people.” And that God is who I need to trust when things feel so heavy.
This is my last week of medical leave from surgery. So please pray that the bronchitis goes away quickly so I can get some more normal sleep/rest before going back to work. And pray for my aunt and friend to be healed. And then maybe take a moment to see how God may have worked in your life this past week. It might be more subtle, but if you find it I bet it’s beautiful.
“The Lord will fight for you; you need only to be still.”
It’s been 4 weeks since surgery. To the rest of you, it probably feels like 4 weeks. For me, it feels like maybe one or two- mostly because those first couple weeks were such a fog.
Time is confusing. I often don’t know what day it is. I sleep- a LOT! I do it because I know I’m supposed to rest so my body can heal. But since I had surgery on all sides of my body there is no position that is comfortable and sleep is very restless.
A typical day has involved Rob getting the girls up and ready for school. I get out of bed just long enough to kiss Liana goodbye and wave to her through the window as her bus passes the house. After that I go back to bed for a while. The rest of the day consists of small tasks that now feel enormous, mixed with laying on the couch and dozing in and out of sleep.
Just appreciate your body when it works well. Next time you can bend over to pick up your kid’s dirty sock off the floor, be glad you can bend without pain. When you can lay on your back and fall asleep easily, be thankful that you feel comfortable enough to sleep. When you can pull the car door closed from the inside no matter how wide open it is… appreciate that reach because it is tough when you don’t have half of your back muscles.
Physically, everything continues to heal just as expected. My incisions are all healed well. I happened to have a follow-up with my oncologist today and she said she was very impressed with how good everything looks. I also started physical therapy again today. My PT was also very impressed. When I look in the mirror, I see a patchwork body like Frankenstein… so it feels good to have professionals (who have seen many surgeries) say that things look good.
Since I’m healing well, they’ve started to fill my expanders. They just add a small amount of saline into the expanders every week to slowly stretch out the skin. I’ll go again tomorrow for a little more. We’ll just continue doing that a little bit every week or two for a while… so that they slowly expand and aren’t painful.
The girls are now done with school for winter break so it’ll be nice to spend time with them. It’ll be low-key fun with puzzles and games, but that quality time is super sweet so I’m looking forward to it. Everyone enjoy getting ready for the holidays. No matter how busy things get, remember that there is always so much to be thankful for this season.