When we don’t know what’s up ahead
This is not an unusual topic for me to write about. It tends to come up when I’m confronted with a new development in my daughter’s journey. Living in the moment is a way to live all the time but seems to be challenged when her health takes a dive as it did a few weeks ago. After learning her lung functions dropped significantly, she eventually heard the plan. Five days of rATG in Duke Hospital (done), then four weeks of a once-a-week infusion of Rituxan (a chemo drug that wipes out b-cells, the part of her immune system that is attacking her lungs). After that she will receive another bronchoscopy to determine if the rejection has been stalled. If not, she will do Photopheresis (kind of like dialysis) three days a week for a few months.
This week she and I travelled to Duke for her first infusion of Rituxan. Our hope is for her infusions to be moved to Colorado to avoid the cost of traveling back and forth every week. If it wasn’t around the holidays we might consider just staying there for the month. For Anna, this means a medical leave from her job and moving back to Colorado for now. She really enjoys her job and loves living independently in Phoenix so this is a tough transition for her. She’s not sure when she will be able to return to work. We don’t even know yet if her second Rituxan treatment next week will be at Duke or in Colorado. It’s a lot of “what do I do?” for Anna (and a bit of that for me as I figure out if I’ll be in NC next week or CO).
Ever been there? You know that place where some decisions need to be made but you don’t have all the information you need yet? For instance, Anna needed to give the rental office of her apartment 60 days notice to get out of her lease. She was planning on staying where she is and a new roommate was going to join her (her current roommate just moved out). Because of the unpredictable state she is in she had to tell the new roommate she couldn’t commit to a lease, so the new roommate is not going to be joining Anna. This is totally understandable. That decision had to be made but it was a tough one because if all goes well, Anna may only need the four weeks of Rituxan and then be stable for awhile, maybe even a year which would mean she could stay in Phoenix with the new roommate in the same apartment. So simple, yet too many unknowns to commit to that.
Her decision has been to end her lease, so she has until February 13. The good news is this gives her some time so she doesn’t have to move completely to Colorado, just for a few weeks while she deals with the Rituxan treatments. She doesn’t have the stamina to totally care for herself and work, so being in CO where she has four parents and two siblings to help her out is incredibly relieving. She is dealing with decisions a step at a time. Her decisions have to made on the knowledge she has in the moment, like giving up her lease and her roommate.
This can be a frustrating situation for all of us, right? When you have to make a decision but you don’t have all the information the future holds in the present. That’s just how it is. Part of our journey as humans on this earth is learning to accept those limitations and make the best decision we can in the moment with the knowledge we have at the time. When the future becomes the present and we beat ourselves up with, “If I had known what would happen, I would have made a different decision” we are being cruel to ourselves. The point is, we can’t know the future. Have compassion on yourself and do what you can with the knowledge you have in the moment. 🙂
December 2, 2018: I mentioned last winter that my daughter, Anna has chronic rejection of her transplanted lungs. It’s a form of rejection that cannot be “cured” it can only be stalled. The stalling effect actually worked and kept her lung capacity at around 50% for several months. In October she was at about 48%. Unfortunately, a week before Thanksgiving, Anna saw a dramatic drop in her lung function on her home monitor which resulted in her needing to go to Duke University Hospital last week. She had dropped to around 40% lung capacity. Her transplant team determined the best option was for her to undergo another round of rATG. That’s the infused treatment she received last December when she was diagnosed with chronic rejection. She’ll be in the hospital for a few more days to receive the full five days of treatment. Hopefully this will stall the rejection again, like it did last year. For now she’s in good spirits and her dad is with her helping her pass the time. 🙂
My neighbor has a home in Morehead City, NC. A fun little beach cottage she and her husband just finished remodeling and it sits right in the path of Hurricane Florence. We chatted at the mailbox last night about holding things loosely and doing the next right thing. Often when faced with some sort of adversity we may freak out, which doesn’t really help us at all. Other times we may try not being bothered in the least, which isn’t actually real. Either option is an extreme and extremes don’t tend to be beneficial.
So what does balanced look like? It’s when we are aware of the emotional impact of whatever is happening but we don’t allow the situation to own us. In my neighbor’s case, she feels the sadness of what might happen but recognizes she doesn’t actually know yet so she is holding some hope that perhaps things will be fine and if not she will then deal with it. Her words, “I’m taking the next right step.”
Closer to home, Anna (my daughter) is going through chronic rejection of her transplanted lungs. I’m focusing on what we know now: she’s fine, she’s humming along living her life even though she is well aware her lungs are failing. This is a slow progression for the time being so no action is necessary at this time. Anna understands this balance of living in reality but not letting her emotions take control. From her blog post in July:
“…yet as with all my fears they turn out to be not so bad and the things that suck are things I never really saw coming. Trust me I know from experience God really meant it when he said “DO NOT BE AFRAID”. There really is no point, it does nothing but get us all worked up, steal our present moments and lock us in a box of fear. Everything I have ever been afraid of happening that has happened was actually okay, there was no reason to get all worked up. And yet God also knew what he was doing when he said it over, and over, and over, and over, and over, and over, and over …. okay you get the point. Not being afraid is something I have to constantly remind myself. My latest mantra is the little bit of the song “don’t worry, about a thing, cuz every little thing is gonna be alright” and it is true!”
“Every little thing is gonna be alright” doesn’t mean everything will turn out as we want it to, but whatever it is, we can grow through it step by step.