They say there are five stages of grief: denial, anger, bargaining, depression, and acceptance. I think there are five stages of waiting for a transplant: shock, action, bargaining, anger, and acceptance. Shock, on the initial news of needing to receive a transplant. Information coming at you from all side, shock of all the rules, and all the hoops you have to jump through. In our case, especially, with having to try out multiple hospitals and then having to move to a new city. Action, after absorbing all the information thrown at you, rolling up your sleeves and facing this challenge head on. Researching new procedures or antibiotics, reaching out to people who have gone through what you are about to. Getting all your affairs in order, organizing your life so that when the call does happen you're ready for it.
Bargaining, after waiting and waiting on the list and being told you are at the top or the call could come at any time, you start to make deals with the universe or empty air around you. Each night before bed sending out positive thoughts, even looking for signs in every day life as to when the call will come. Being on edge, every time the phone rings, convincing yourself the next call will be it. Anger, at still waiting, after a dry run, after almost twelve weeks in the hospital, after being on IVs for six months. Anger that you were told the long end of your wait would be around three months and now you're going on five. Anger, that Colorado could not do the transplant because they're not equipped, nor on the same level as the U of M. Anger that you have no control over the situation. Anger you don't have a crystal ball. Anger that you're helpless. Anger because you are angry.
Acceptance, finally realizing that there is nothing you can do. It's out of your hands, literally. Acceptance that you get to spend some serious quality time with your little sister that the majority of siblings don't get. Acceptance that you will probably still be in Minneapolis this summer. Acceptance that Colorado is not going anywhere and neither are your friends. Acceptance that one day when you're back in Colorado and working you will be longing for the days when you just hung out with your sister giggling and making fun of True Blood. Acceptance that this is where you're supposed to be and it's a good thing. Acceptance, that out of this long experience you'll be able to help others out, who will be going through something similar.
My five stages may not be applicable to all people who are waiting for a transplant but I'm sure the majority can relate in some shape or another. I'm finally on the acceptance part. Rima and I both had it in our heads that we would be back in Colorado by June. Well, I've stopped thinking like that. We will be back when it's time. When Rima is ready and get's the go ahead from the transplant team. Till then we're going to stop thinking in the context of a deadline or timeline. Which is a totally new concept for me. I love deadlines and structure and planning. We're flying by the seat of our pants. I'd be lying if I said I was fully over the anger stage. I'm straddling the fence between anger and acceptance most days.
To kick off this final stage, acceptance, I surprised Rima with a little outing last Sunday night. I took her to the Minneapolis arboretum to see a very cool art installation by Bruce Munro. He created several art installations throughout the arboretum grounds that used thousands of LED lights. Rima and I arrived about a half an hour before sunset. We checked in and talked out a game plan of which installations to see in which order. There was a bit of walking involved, Rima was such a trooper and was happy to get her steps in, even though she was having a bit of a hard time breathing that night. The installations were pretty cool. There was one in a court yard with what must have been medieval choir music playing. The art installation consisted of plastic bottles filled with water and stacked to make cylindrical towers. They all had LED lights in them and changed colors.
Another installation was spread through a garden, with thousands of little LED poles covering the ground. Our favorite was down a hill and a little into a patch of woods. Hundreds of neon clothes clips were hung on string throughout the woods with creepy frog, bird, and insect sounds blaring from hidden speakers. It was a bit bone chilling but in the best way.
Last Tuesday was Valentines day, but it was also Rima's IR (Interventional Radiology) appointment to see what was wrong with her port. It's been sluggish and hard to flush the last couple weeks. We had to be there at 10:30am but they would not start to work on her till after 12pm. Yeah, I know, we were also confusedly scratching our heads at this when informed. Rima was told not to eat or drink anything that morning just incase they would have to sedate her to work on the port. My surprise morning valentine pancake breakfast for her was ruined, harumf!
We were at IR till about 2pm. When they finally did take her to check out her port they brought her to a procedure room. They injected dye into the port to be able to see everything inside better with x-ray. The contrast dye helps to see if there are any clots or build up of fibrin in or at the end of the line. They didn't see anything but the port was pretty difficult to flush. It took a while for the doctor to push the contrast through. One of the times he was flushing through, the cap connector busted apart because of the force. Eventually he was able to get the line flushable.
They were ready to put in a new port that day if it had come to that but suggested we give it more time before that decision. Which basically meant that until it's a complete permanent brick wall or until Rima is so sick of dealing with it. By the time we left I was hungry and so was Rima. We went to a cafe we had been told about while Rima was admitted. They had tiramisu pancakes. One thing you should know, Rima loves tiramisu, so the fact that this place advertised they offered pancakes of this sort was very intriguing to her. I'm sad to report that they falsely advertise. "Tiramisu pancakes my ass" Rima said, a few times. They were regular pancakes with chocolate syrup on top and a strange whip cream ball on the side. "Fibs and lies" also came out of Rima's disappointed mouth.
It was my job to swoop in and save her disappointed stomach and taste buds from the train wreck we just walked out of. For dinner I was making lemon dill salmon, rice pilaf, and green beans. For dessert I made chocolate covered strawberries the night before and chocolate covered clementines with black sea salt sprinkled on top. I also had a bottle of rosé for us. All in all, we had a nice valentines day all things considered. Rima made me the CUTEST valentines day cards. They were all puns with vegetables two of my favorite things, she knows me so well!
Last Friday, Minneapolis got a bit of a weather surprise. Sixty-degree weather in the middle of February. Now, we're not from here so we don't know if that's normal, but we took full advantage of it. We went to one of the pretty lakes in the city, Como Lake. We house gawked and then walked around for a bit. After, we grabbed a bite to eat on an outdoor patio overlooking the Mississippi river. Springtime in winter, I'll take it! We shared a deep-dish pizza and had a tropical cocktail while soaking in the winter sun! Saturday was also in the sixties, so we opted for an outdoor activity again. I found leash free dog run by one of the lakes we like to go to in the city. We were total creepers, going to a dog park and staring at people's dogs without one of our own. Rima thoroughly enjoyed petting strangers dogs, which is all that mattered. There were probably ten to twelve dogs chasing each other and rolling around in the dirt at all times. It was a bit muddy because of all the melting snow so we got a bit muddy, Rima's sneakers looked like a Jackson Pollock painting.
Sunday we stayed in our neighborhood. We had a low-key day full of snacks, True Blood and a walk outside around one of the neighborhood walking trails. We even got to treat ourselves to some swing time. Rima met a new purple friend. She didn't get far with him, but at least we know where we can find a friendly purple dinosaur that does not break into random song and dance.