Well, the journey is technically more than halfway over today. Day +51. This whole experience has been so very different than I thought it would be, and while I know that I have already gone through so much and so much time has passed, it feels like I am barely scratching the surface of healing and resolution. This transplant is testing my faith, emotional stability, and physical capacities in ways cancer has never tested me before and my greatest prayer is that I can withstand the onslaught and pull through this with some modicum of grace, but I think I fail in that daily. I was honestly expecting it to be much easier, much more like the last one that really was only a few weeks of hard times and then things started to improve quickly and with no complications. I am trying to remind myself that it is good it is hard this time. I need the GVHD, I need the complications to finally kill the cancer and be done with all of this, I need for this to be the trial of a lifetime so that I can have my lifetime.
But that lifetime is so uncertain right now, and the daily realities of dealing with the transplant combined with the daily realities of every day life are becoming overwhelming. When we made plans for the last transplant, everything was set in stone, we had plenty of money from fundraisers and our own savings, and things played out like clockwork. We found a month-to-month apartment and planned to stay for only 100 days as we expected no issues (and had no issues). We had a home to go back to in Idaho waiting patiently for us. We knew I was starting and finishing my master's degree as soon as I was able. Colten found a great job. Rora was all set to go to a great school. Easy. Plan and execute, get through the garbage, and move on with life. The transplant was a snap and everything fell into place.
This escapade has not been like that at all. I am not one for adventure. I don't like uncertainty. I don't like not having a plan. I don't like not having a sufficient budget on hand. I don't like not knowing where I will be in a year. I don't like not having a home. I have never really gone through these things before other than when the economy tanked in 2008 and we had to leave Boise unexpectedly. But it was just Colten and I, not with our daughter and a whole slew of real adult responsibilities and decisions in tow. Right now our entire lives pretty much revolve around "winging-it," and this is something that is new and terrifying and needs to end very soon for the sake of my sanity.
So, in the transplant world, we are "crossing our fingers." This is the medical term I was given by my doctor. They decided to start tapering down my steroid dose on Wednesday, but they have no idea how my body is going to respond. The doctor actually told me I was very lucky to be responding so well to the prednisone (steroid) at all because they have many people who don't, but that can change at any time. They have absolutely no idea what is going to happen. I am currently diagnosed with both acute and chronic GVHD, and they expect me to have to be on the steroids for at least a few more months for the acute, but it could be years if the chronic GVHD persists. I don't believe that will happen, but it was a nice scary thought for my doctor to send me out of the office with. They are planning to give me an immunogoblulinsomethingweird transfusion next week that will take 3-4 hours to help boost my immune system a little bit and maybe give me some more muscle strength. I was reminded that the taper will eventually help with some of the muscle weakness, but it is going to get worse before it gets better, so the next month will be rough. Joy.
My P.A. told me to just make sure I am walking daily and trying to get in little exercises for my upper arms and thighs whenever possible as they deteriorate first, but to take it easy and try to let my body heal from the GVHD. Eating has become the focus of my days. I am constantly hungry from the steroids, but chemotherapy has changed my taste buds so much that I crave the oddest foods and then find that few things actually taste good. I think I am just going to start eating some sort of protein mush--super cheap and it doesn't matter what it tastes like. Just get those nutrients in there, right? If my worries and responsibilities ended at the hospital and with what the hospital wants me doing, I think everything would be ok. I still hate not being able to move, dreading and avoiding stairs like the plague, taking a back seat in watching my daughter play and interact with the world, being half a mom and a wife, but I am here and I am working on it, and I know it will (and I will) get better with time and effort. Doctors can say that they don't know what will happen and cross their fingers all they want, but I know I have some control over my body and I know that I will be ok. Hospital world is easy. Take your medicine. Do some exercises. Relax. Eat. Give it time.
Real world is kicking my butt. We are still stuck half moved in to a second floor temporary apartment with most of our bigger possessions still sitting in our trailer in Chubbuck. The new approximate move-in date for our first floor apartment is August 5th(ish), but we'll see how that actually goes. Our trailer home has still not sold, which is one of our primary sources of income for living here the rest of the time we have to live here, so that is causing me untold amounts of stress praying that we can actually sell it. I can't really think about what is going to happen if we don't. And a huge part of me aches thinking of what will happen when it actually does sell, because my permanent home that I own and have loved and lived in and raised my daughter in for five years will be gone forever. There will be no safety net to run back to if everything falls through.
And with lack of finances always come the unexpected expenses, which seem to be piling on by the day. My biggest stress right now is where Colten is going to complete his degree, and getting him to that program. We've known for quite a while that he was going to pursue his doctorate in physical therapy, and we have narrowed down our choices to about five schools, but we have no idea which one will accept him and therefore no real idea of where we will be next year. That fact alone can wreak havoc on finances, but what makes it much worse is that the physical therapy area is really redefining itself right now and moving all the programs from master's programs to doctoral programs and so forth, and suddenly there are all these extra classes that are now prerequisites for getting into these wonderful institutions. Classes that we don't have the money for, and that Colten has to take this fall.
The next few months are going to be nonstop shadowing, studying, and writing for Colten as he works to meet the October 1st deadline for all these graduate schools, and I really can't do a thing but pray for financing, strength, and enough time. He's been able to get small amounts done here and there, but with caring for me nonstop over the spring semester and summer, the real cramming all starts now, even as he continues to care for me. He is also looking to start working part time at our apartment complex next month, and I am scared as to how that is going to play out with him being gone so much and me barely able to get myself off a couch half the time. I need to heal and move much quicker than expected so that our lives can keep going. My husband is amazing. And more than anything else, more than any stress or worry that I have, I just pray that he will have continued strength and determination, and I am so thankful for him and all that he does.
We did find a community college that appears to offer the classes that Colten needs, and due to my medical situation requiring us to move here, they have offered him in-state tuition rates, which will cut the cost of classes in half. It's a blessing; everything helps. Aside from Colten's career, Aurora is also getting ready to start school here. I have heard little to no good things about the Utah school system, and am praying that she ends up in a decent place. Our district is a charter school that is supposed to be very good, but it focuses almost entirely on mathematics and engineering, no English or the arts. I guess the one benefit is that she may only attend a semester here before we end up moving elsewhere, but I feel badly about pulling her out of school halfway through the year, as well. As for me, I am just a worthless lump in the real world of life right now. I am hoping to remember what a debit and a credit are by the time I finally get to start using my degree and hopefully find a wonderful and fulfilling career wherever we end up moving. But my field is very flexible and there should be jobs just about anywhere we go as soon as I am fit enough to perform them, so I am remaining stubbornly optimistic that my mind won't completely fail me and that work will not be a huge obstacle in the long run. Not much I can do about it right now in any case.
Yesterday my hubby brought me home a sign from the hospital. It reads, "Not to spoil the ending, but everything will be ok." I put it right by our door and I stare at it all throughout the day. I know that I need to remember these stresses are not the important things. Even huge financial worries are nothing in the grand scheme of God's plan for my life. They feel insurmountable right now, but they will be taken care of in the end. Everything will be ok. I feel like my mantra is "one day at a time," just get through today, enjoy it, take what you can from it, and let tomorrow's worries rest until tomorrow. Heal. Breathe. Repeat.
Please keep us in your prayers with all the instability, financial issues, healing, and work that needs to be done over the next few months. It promises to be an interesting last half of the year, to say the least.