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. 🙂
Many of you have followed my daughter, Anna’s journey with Cystic Fibrosis, a lung transplant and cancer. She is still doing really well and turns 25 tomorrow!!! I can hardly believe I have a 25 year old daughter…I was 10 when I had her! 🙂
She survived another round of rejection this summer, still shows no signs of cancer and is back in college hoping to graduate in about a year and a half. Happy Quarter of a Century Birthday, Anna!!!
I don’t really mean we can predict what’s going to happen but we can predict there will be winding, unexpected occurrences in our lives. I’m certain you know what I mean because if you are breathing you have experienced some moments or seasons you did not think were going to happen. Sometimes they can be good things…sometimes they don’t seem good at all. The best job you can imagine…a baby…a broken bone…a new house…a free cup of coffee…an accident…a call from a friend…a broken water pipe…cancer…a puppy… I could go on but I think you get the point. We have no idea what is going to happen in the next second, really. We can guess and sometimes our guesses are spot on but we don’t really know. Anything can happen. And you know what? That is life.
One of the biggest dangers we can get caught in is believing we know what’s going to happen. We are making assumptions and you know what they say when we assume? It makes an ass out of u and me. What’s even worse is we set ourselves up for disappointment. We can slip into an emotional downward spiral because we assumed or predicted and we were wrong. One of the best words of wisdom I’ve heard was from a man named Toby Shope. He was preparing me and others for a journey to Afghanistan. We learned how to dress and act to honor the Afghan culture.
Toby taught us to have a blank slate approach to our experience. Just let the canvas be filled in as I take each step of the journey. This concept has helped me so many times since the day I learned it in 2010.
My daughter Anna, whom I have mentioned in many previous posts, has Cystic Fibrosis and received a lung transplant in 2013. She’s experienced so many set back and challenges throughout her life. Just recently she learned she has rejection. At this point it’s treatable so we are hopeful. Learning of the rejection was a reminder that so much in our lives is out of our hands. The less I cling to what I think should happen the easier it is to accept what is happening…to let the blank parts on my canvas of life be filled in as I take the steps rather than having to waste a ton of energy erasing what I thought would happen and then trying to fit what is happening on top of the erased parts. It’s cleaner if I just let it happen…it’s going to happen anyway.
Anna, my 24 year old daughter, wants to get as many people as possible to help her raise money for Cystic Fibrosis research. The Cystic Fibrosis Foundation is one of the most fiscally responsible non-profits, ensuring that nearly .90 from every dollar raised goes to support research and programs for Cystic Fibrosis. To raise money, Anna is leading a team for the Denver Climb, a grueling stair climbing race held at Invesco Field/Mile High Stadium on June 25. If you want to join her team or support her team members click here
She is also selling her “I Love a Lemon” t-shirts with all proceeds going to the Cystic Fibrosis Foundation. Click here if you want to buy a t-shirt but hurry because sales close at 11:59p this Friday June 13…sorry for the short notice!
The phrase “I love a lemon” came about after Anna was diagnosed with PTLD, a form of lymphoma that affects transplant recipients. Her sister, Grace blurted out, “Anna, you are a lemon!” It was funny to all of us, including Anna and she has been our lemon ever since. If you have just one major issue it’s bad enough but Anna has had four! She put together a video capturing her journey through life so far. If you’re interested in watching that, click here
Thank you! Karen