There’s an overwhelming theme in my day-to-day life, and it didn’t just start during my cancer journey. Patience has always been really really hard for me. I think parenthood was the first time I was forced to make progress in this area, and each phase the kids have moved into, I’ve have had to grow a little more patient. But during this health crisis I’ve fought patience and resigned with patience over and over again: on getting the diagnosis, getting the appointments and results in a timely manner, waiting in waiting rooms, waiting for my hair to grow back, waiting to be reunited with our kids, waiting on insurance approval, etc. Unfortunately, there are many many examples.

Right now with my Graft vs Host Disease I feel like I’ve backtracked and now I’m not-so-patiently waiting for my donor stem cells to stop attacking my eyes and lungs.
I guess the GVHD blindsiding me didn’t help. I was on my way to feeling stronger and more like my self when my significant shortness of breath started and my dry eyes took a steady decline of blurriness, scratchiness, stinging, pain – not able to keep my eyes open.
So, currently my eye treatment includes steroid shots inside the lower lids, restasis drops, steroid drops, lubricating drops and ointments, flaxseed oil. It’s a day-long rotation that sometimes allows me to keep my eyes open, but often there’s no choice but to close my eyes and distract the discomfort with warm or cold compresses. I will see my ophthmalogist this week to reevaluate where I’m at.

For my lungs, I’ve started on continuous oxygen at home and in the car. It helps my lungs to not work so hard. The smallest things get me out of breath and require me to catch my breath – this is really a patience tester, and sometimes causes panic. Often times I get up and quickly move to do something, when I am quickly reminded that I’m unable to do my normal activities. So either I do nothing or I do tiny steps of one simple activity. We are also continuing the photopheresis 4x/month, infusions of IVIG, and Rituxan immunotherapy, inhalers, nebulizers, lung medicine, immunosuppressant meds and steroids, and due to me already catching 2 colds that have set my recovery back, I take 3 antibiotics, an antiviral and a crazy-expensive antifungal that’s $5000. Thank goodness Vanderbilt has worked with us so that they charge the cost and then let me reimburse them when the insurance company pays me back. Lots of hoops to jump through.
So you can see for the impatient person, these last few years have been an obstacle course of patience-testers. And I do get discouraged sometimes. I know that that is okay and that is understandable, but it’s not fun to stay in that state of mind for too long.

So, I try to think of the many things I DO have. Like I’m living in my house, with my family, in my cozy bed. I get to hang out with the kids with a few germ-related rules, and spend time with my husband. Our parents are still on call and are so helpful. And my neighbors have surprised us with an occasional meal – which I was sure I had surpassed the alotted amount. 🙂

My stem cell doctor is very positive about my eventual recovery BUT it will require me being PATIENT. It is going to probably be a 1-year process and maybe more.
So, I’ll be home most of the time (except my 2-4 hospital visits per week), resting a lot, doing little projects as tolerated and watching tv or reading as my eyes start to improve. My parents have been wonderful house cleaners, errand runners, and stand-in parents for our kids. And of course Jonathan does a ton, but he is also running his (4-year-old! Happy Anniversary) business – and doing great! openskyideas.com