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. 🙂
As we approach Thanksgiving in the US, it’s a good reminder to shift our thoughts toward gratitude. Sometimes it seems as though there’s very little to be grateful for. If you’re reading this blog chances are good you have electricity, internet, a smart phone or a computer. Be thankful for them. It’s also likely you have a roof over your head, somewhere warm to sleep, and food to eat. If it’s hard for you to find things to be grateful for, start with these. We sometimes forget to be thankful for the basic necessities of life.
Watch the sunrise or sunset and notice the beauty it casts across the sky. Take pleasure in what nature has to offer you, even a weed poking though a crack in the cement. Observe the unique qualities in the people whose paths you cross. Look around you and find what you can be thankful for.
This is an exercise in seeing the positives in your life rather than focusing on the negatives. When we shift our attitude toward gratitude we open up space within to find contentment and joy. Try it 🙂
What to do about those unwanted thoughts or emotions? It’s crucial that you first understand what you are feeling or thinking. After naming it, find connections to help you understand why you are thinking or feeling what you are. Here’s an example: if you are feeling fear, what is the fear reacting to? Perhaps you just heard about impending layoffs at work and you’re not sure if you’re going to lose your job? It makes sense to feel fear when you don’t know what’s going to happen.
Now that you know what it is and why it’s there, you can work to change it. How will you benefit by continuing to feel the fear? Perhaps it will help you do your job well. Maybe it will help you update or start your resume, to begin thinking about the possibility of a job change for yourself. Think of channeling that fear energy into doing the things you can to prepare yourself, just in case.
Next, focus on the thoughts that led to fear. It’s likely something along the lines of, “and I’m going to lose my job.” What do you know is true and real beyond a shadow of doubt? Perhaps you received a memo from HR that announced upcoming layoffs. All you know is you received that memo. That’s it. You know nothing more so don’t add to the story: “Oh my gosh! I’m going to be laid off, I’m not going to be able to find another job and I’ll be living under a bridge.” You don’t know that won’t ever happen, but you also don’t know it will. You don’t have any data to support this. Have people lost jobs and ended up homeless? Yes. Do you know beyond a shadow of a doubt it will happen to you? No.
When you put your thoughts through this test, it helps to minimize the emotion that is connected to the thought. Now you can free up some mental and physical space to work on your resume, just in case. It’s ok to prepare for the worst while acknowledging you don’t really know what will happen.
You will likely need to go through the process again and again of asking what is true and real about your thoughts on this very same issue. I like to say, “rinse and repeat” because our thoughts have a way of going back to square one. Just recognize what you are thinking and feeling, and repeat the process.