Slowed Clocks, Updates, and Becoming...

Hope everyone had a restful, safe, and happy Holiday. We kept it low key, but I very much enjoyed some much needed down time with the family. We played some board games (Anyone obsessed with Dominion??), watched a family movie, Paul smoked some Kaula pork, and we had some yummy sides and pie to go with it. There is even enough for dinner tonight and I can't wait :) 

I've had a few appointments since my last post. So, I thought I would give a new update...

Pulmonology/Lung Health

I had a follow up with my pulmonologist. Two great praiseworthy things...

1. My pneumonia and the lung set back it and my last surgery (June 2nd) caused have improved so I am officially back to the level I was before all of that happened. I'm still not back to 100% like I was before my big surgery back in March yet, but they have a plan I will talk about in a bit. 

2. He went over my recent CT scan in detail. He said structurally my lungs are not damaged from the radiation to the area, my big surgery where my lungs were deflated for around 10 hours, or the ventilation that occurred after the surgery. There is no scarring and he does not see anything that would make him think my current lung issues will be permanent at all. YAYYY! YAYYY! BIG YAYYY!

He is keeping me on my steroid inhaler, nebulizer treatments, and I'm still on home oxygen. He is sending in a referral for pulmonary rehab, if insurance approves, to help build up my stamina as he thinks I have some deconditioning from the trauma of the repeated surgeries and anesthesia. I'm open to trying anything as it has been hard to get use to the limitations of being on oxygen and struggling to sometimes breathe.

I described it to him this way...Since this time last year, I have lost around 100lbs (another big Yayy!) and physically, in that regard, I feel better than I have in a long, long time. Mentally, I am also feeling anxious to make memories, live and get back into the swing of things. My lungs, however, are not on par with everything else and it takes me aback when I keep hitting the wall where I can't breathe when I get up and start to do. 

Surgery/Eating 

My next surgery (to remove the esophageal stent the placed in June) will be on July 16th. I'm kind of nervous for it as this last surgery was a lot more painful than the dilation procedures I've had. I am hopeful that it will have done the trick though and I will be able to continue to swallow with ease like I have been for these weeks that its been in place even after it is removed. Id love to be able to catch a break from this every 3-week cycle of surgeries. I feel like achieving a good result in this is going to be key to my lung health too. 

Eating has been going. I am supposed to be on a soft food only diet until the stent is removed to keep anything from getting stuck and I have been mostly compliant. Nothing like the idea of not being able to swallow to scare you into being a rule follower. But ohhh my how I have grown my list of "when I can eat I want..." lol 

Since my esophagectomy in March,  its mainly just been soups. applesauce, yogurt, eggs, and protein shakes as my go to staples and a few extras thrown in to keep me going. Truthfully, I really, really miss salad! I want a huge crunchy salad with all the toppings (realistically I know it will always need to be small portioned and I will settle for just a bite even of salad) and jalapeno poppers (that one is my current missed food obsession for today) and popcorn...all flavors of popcorn. It is my most favorite comfort food thing of all. 

A popcorn story...I have fibromyalgia and early into our marriage I started to have a really severe flare up. During one particularly bad week I was in the bed and truthfully feeling really down on myself and my limitations. Paul, being the sweetest guy I've ever known, showed up with some cheer me up things to brighten my day. He got flowers, my favorite drink and a few other things but yall!!!  he was absolutely BEAMING when he brought his hand from behind his back to reveal a large ACTUAL movie theater tub of buttered popcorn!! I cried and laughed and laughed and cried and questioned him as I munched down. For those wondering, yes.... he actually went to the theater, told them he didn't want to see a movie, he JUST wanted to pay their outlandish prices for popcorn just for ME because he knew I loved it so much.  And...want to know a secret...that wasn't the last time he did it and he just said the second I can eat it again, that is where we are headed movie or not :) 

Time

Time is one of those things that isn't static. It changes depending on what you are thinking about or doing. We wait in traffic "forever" but the weekend goes by in a "flash". Hard days with our kiddos seem "soooo long" but then you "blink" and they are grown. The same thing is true with time during major illness. The days spent waiting to find out treatment pans, confirm the diagnosis, and check for growth or shrinkage all seemed to tiptoe by but then I turn around and can't believe all that I've been through and that we are soon to be approaching a full year of living with this life altering disease. 

I have had 28 radiations.

I have had two months of Chemo.

I have had a total esophagectomy.

I have had 6 endoscopies. 

I have had 4 surgical dilations. 

I have had 1 stent placement.

I have had 1 chest port placement. 

I have been ventilated.

I have had a PICC line. 

I have had countless blood draws, finger pricks, xrays, CTs, PET scans, follow up appointments, and recovery periods. 

On one hand that seems like so very much to do in less than a single year. And trust me, some days I feel the weight of all of the appointments and poking and prodding. 

But then I think about how while going through ALL of that I managed to find time to make memories, count blessings, and grow deeper in my relationship with God and well... I definitely feel like I have been gifted the blessing of living in 1980s summertime time this past year. All you older (*cough, cough* my aged) people know what I'm talking about. Didn't elementary school aged summers last soooo long?? It seemed like the hours and days just stretched out so you could soak everything up. 

Somewhere along the way as we aged we lost some of that magical wonder of elongated time and the weeks and months began to just fly by. 

I've been grateful for slowed clocks this past year and post-surgery I am especially enjoying the slowed moments and the awareness of the fact that I get to choose what I do with them. God has been speaking to me in the silence between the ticks. He is reminding me of what is important....and what is not.  He is teaching me to take notice. He is inviting me to just come and continue to sit at His feet when things are mostly calm and I am not in emergency crisis mode. It feels nice. It reminds me of how it felt to float in the water. There is a peace to just going with the natural rhythms of life. It sure beats the panicked feeling of trying to always catch up or hold on or squeeze something in. I am growing in this place like we all did between the last day of one grade and the first day of another.  I look forward to getting to know who I am becoming BECAUSE of this. I think I will be particularly fond of her.