“Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain!” – Unknown
In Gail Sheehy’s Eight Labyrinths of Caregiving, Labyrinth III is the Boomerang.
A boomerang is an aerodynamically shaped object designed to fly efficiently through the air when thrown by hand. The term usually refers to an object made to follow a circular flight path that returns it to the thrower. (reference)
While the boomerang is flying it is also spinning. Yeah, that sounds about right! Certainly in the disease of myeloma, it’s realities, I can appreciate this analogy. One thing we sometimes do, is worry about it coming back. Our struggle with how well we throw it, is in reality, what treatment course we choose to determine it’s flight path. We have to also come to grips with that sometimes, no matter what choices we have made, how well we throw the boomerang, we can’t always control it’s flight path. All we know is, we want it soaring far and out of sight for as long as possible.
On top of that, we have made some new friends. Myeloma friends. We love them. They understand. We are in this together. I know I struggle with seeing other boomerangs fall out of the sky and hit those I have come to care for.
Gail Sheehy describes it as something that has settled down into a new routine. You are handling things, everyone has made adjustments and then BOOM! The boomerang has returned. New crisis to contend with, setbacks, disappointments, it’s a new ball game. Your are thrust back into Labyrinth I of Shock and Mobilization. But this time, you are a bit more seasoned. You’ve been there and you have a better grip on what to do and how to proceed.
She also points out something rather interesting to me personally, and one that I would have to say I have observed. This time around you aren’t so willing to passively accept your doctor’s opinion. You are more aggressive about getting information, and understanding better where you are and what you will decide to do.
It’s a time when you might need to reorganize your team. You know how we read about professional teams at the end of the season. The shakeup! The reorganization! This is sometimes, and quite often, what we now need to do. You might want to have other consultations. Talk to people you have met in your first go round. Look at complimentary/alternative therapies.
She further writes that this is a time where caring for yourself needs to be a part of the program. Gather your troops and try not to go it alone. Try to shift out of crisis mode and into a routine that you can manage.
I’ve often expressed on my blog about my thoughts on myeloma’s return and expressing a desire that you don’t let it keep you from living. In that in between time of being stable to it’s potential return. We don’t know how much time we have before the boomerang comes back into view. Whether it will be sudden or slow. Come into view first, or drop out of the sky. One thing I know for sure is you don’t have to look for it. It will bang you upside the head no matter where you are or what you are doing. So just try to enjoy your families and your lives in the meantime. That’s the head game if you will. It’s not easy, but it’s possible. Dave, when given the opportunity to meet other cancer/myeloma patients has surprised me when he brings this up. He asks them how they are doing with this. He shares with them his view. Its one of the times where chatty Lori just shuts the hell up and listens. It’s not something we talk about much and so it’s a wonderful opportunity for me to gauge where he is in his head. I know he’s doing well from day to day by what he’s doing and his demeanor. But these in depth conversations and points of view that he wants to discuss with other patients is a rare and wonderful opportunity for me to listen to him. What he thinks and how he feels about it all. The very first time it happened, one of our neighbors in our new home had heard about our plight. While we were away for treatment his young son had been diagnosed with Leukemia. On our return Dave was outside mowing the lawn. The neighbor came over, introduced himself, and with tears in his eyes told Dave what an inspiration he was and why. I remember feeling anger well up inside me. What next? Whose next! This sucks! Dave reached out to this Dad and began to give him hope. I would have done that, but suddenly with my mouth slightly agape, I physically took a tiny step back from the two of them and just listened to my Dave give this father hope. He was confident, firm, unwavering. I was pretty “wowed” to be honest with you. I realized at that moment, “Dave has arrived.” He’s going to be just fine. (The son had a curable form of childhood leukemia and is doing terrific!)
We don’t know how long we’ll live, what the future holds, whether we have cancer or not. With myeloma, we’ve gotten a pink slip on our door, but the date is not filled in. Some healthcare professionals have given you a general timeframe sort of thing and then we find others who might give us a better one. Sometimes though, there are trade offs. So do your research and what works for you and your family. There is a lot to weigh in your decision.
I can tell you that personally, for me, I was very tentative about stepping back into a life that was rockin’ from dawn ’til dusk with responsibilities and obligations. It wasn’t that I was afraid Dave’s MM was going to come right back, I wasn’t. But I found that I just needed to make sure I could keep Dave my priority at all times no matter what he or I were doing. Eventually, I became more confident that I could take on a few things. He’s doing well, so it’s not good for me to sit around waiting for the Boomerang to reappear. I’m just thoughtful about things I take on. I try to keep them pleasurable, short stints of time and obligation and seldom do I commit out long term. It just seemed to make it easier for me to accept when he might not be feeling well or needed to go to the doctor for an unplanned visit. I didn’t want to put myself in a position of being annoyed with him because I had “obligations”. It helped to be less stressful for me. I want to keep things easy going as best I can. Even though my caregiving duties are very light at the moment, almost nonexistent, I’m acutely aware that it’s not over and I could have the hat thrust back on my head anywhere, anytime. If I want to have fun with it, I liken it to Mission Impossible. I’m living my life, my bag is packed and tucked away, but always at easy reach. When I get some weird person handing me something that then requires I move from what I’m doing to something else, swiftly, quickly, and with confidence. When I get there, I’ll be briefed more fully. That’s how I take care of myself. So keeping myself busy in ways that I can set it aside at any given moment. Being willing and able to experience anything at anytime.
I’m aware that we all have our own unique situations. The point is to garner something from these suggestions in such a way that you can understand better making changes in your life so that you can cope better with what is going on. Caregivers tend to care for everyone but themselves. They don’t have time. Our loved one needs it more. I understand totally. But if we fall apart, faint in the hallway at the hospital, we aren’t going to do anything except create another crisis on top of the one we already have. So just be aware that in all your caring, put yourself on the list. It doesn’t have to be big, you just have to be on there.
