This is probably the hardest blog I will ever write, both physically and mentally, as I try to chronicle all that has happened between the last time I wrote and where I am now...wherever that place may be. I will admit things to myself and my avid four readers that I don't want to admit, and I am not sure where that will leave me when I have expelled truths about myself that nobody wants to hear or think about. But they need to be said. For me. This journey of mine was so intended to be inspirational and meaningful, and yet seems to have become so much less. But it is the only journey I have to share. So to begin, I just want to note some things that have happened, so that maybe a year from now, if I am still here, I can remember what transpired and all the events that were part of this transplant like I wanted to. My hands are cramping as I type these words and I am already contemplating scrapping this entire blog, but I am going to keep going as long as I can and try to get this out.
Well, a few weeks ago we went back and cleaned out our whole trailer from top to bottom. It was rough, Colten did most of the work, and I felt like I would die when we were done I was so broken and tired. But it was clean, and ready to sell, finally. Of course it would sell! (it still has not sold). We took our truck back to drop off another load of boxes into storage, and I felt the world grind to a halt as Colten said, "our engine is dying," and he pulled the truck to the side of the road and shut it down. Steam rolled from our hood and our heat was through the roof. So we called for roadside assistance through our insurance, and sat in the intense summer heat for forty minutes waiting for the tow truck to arrive. So much for me staying out of the sun as we roasted on the side of the interstate. And not only were we only about 15 minutes away from our trailer, but we still had to make the 3 hour drive back to Utah that night. A friendly police officer stopped by to check and make sure that someone was on the way to assist us, and left with an unappreciated "funny" comment about how, "Hey, at least these things always happen on the hottest days of the year."
We called our mechanic about the truck, listened to more money dumped down the drain, and pretty much decided on the spot to sell the hunk of junk. Until the tow truck driver showed up. Who also happened to be a mechanic. I might mention this whole time my little girl is drenched in sweat, sitting with nothing to do, and not complaining once. She's just sort of amazing. And she's the biggest part of this post, I think. Her primary focus? She got to ride in a tow truck! The tow truck was huge, and I stared at it in horror wondering how I was possibly going to climb the literal ladder on the side of the truck to get in the front seat. I can't do stairs. I can barely go uphill. I cannot climb a ladder. So I dived into the inevitable guilt that I seem to spend most of my days in, and felt myself burn in shame as my husband all but lifted me up into the truck and got me into the front seat. Rora bounded in behind me and was delighted to find that, not only was our tow driver a mechanic, but he had brought his two sons along on the drive (as we found he often has to do, even having them hide from police officers on occasion, but that's another story).
So we bounded along in the tow truck to our trailer, and the tow truck driver took in our situation, and my daughter was the happiest little girl in the world, and she reminded me to smile, and take the good with the bad, and she delighted in the company of the two little rambunctious boys next to her. And as we pulled into our trailer and Colten was talking with the driver about the truck, he offered to fix it--for virtually nothing, $25 for a small part--because he saw what we were dealing with. Once again, a miracle for our truck. It was terrifying, a huge leap of faith, but he asked us to leave the keys and said our truck would be fixed when we could come back for it, ready and waiting at our house. We've been back to the house and the truck appears to be fixed, but we've yet to try and drive it back to Utah. But we had another blessing, and I want to remember it. There are good people everywhere.
So. Our trailer hasn't sold. We've had no solid or valid offers of any kind, and we are unsure how to proceed at this point because if we don't sell the trailer we have no money to live on, but we can't keep driving back and forth to Pocatello wasting gas money for people that end up not showing up, or being a complete waste of time. Just one of many things I don't know how to deal with right now.
Rora started school on August 19th. She was amazing, so excited and ready to meet new people (particularly her teacher, who she hopes to love as much as she loved her kindergarten teacher--I think she already does). She and I are so different. First grade was absolutely terrifying for me. I remember putting my things in my desk with my head bent as far as it would go, convinced everyone was staring at me and I would never fit in. I wanted to go home. Aurora walked in, said hello to her teacher and started on the assigned coloring task. She smiled, she made a friend while I watched her in the receiving line, she handled herself as she always does: self-assured, happy, astounding. She waved to Colten and I with nary a fear nor a tear, and started life in the first grade. She does not enjoy getting up early every day and the days are long, but otherwise she seems to be happy.
Rora has also started soccer. She has never played in her life, just wanted to give it a try, and she is amazing! She is the type of person that just puts her mind to a task and gives it everything that she has. She will be successful no matter what she does in life. Her coach could not believe she had never played, she's a natural when it comes to defense. She seems to prefer baseball so I don't know that she will be sticking with soccer, but I am happy she gave it a try and so proud of her, as always.
Colten also started school, for him it began the 26th. It was an absolute nightmare getting him in to the community college and getting into the prerequisites that he needs for his physical therapy programs, but we finally manged it (huge thank you to Jen and Shane). He takes his GRE on the 1st of September, still has to get in about 70 hours of shadowing time over the next month, a personal statement, and three letters of reference to make the October 1st application deadline for all the physical therapy programs. This while attending school and taking care of Aurora and I full-time. Add this to more things that I don't know how to handle (or, more importantly, how he will handle).
And with that I think there is only one other not-specifically-transplant-or-me-related event I want to recall: a week or so ago a lady came to purchase our old bed frame, she commented to Colten she had never bought anything offline before, was a good person, and was not sure exactly how to do it. He laughed, assured her we were good people, too, and gave her our address. When she showed up to get the frame, she saw me sitting on the chair and proceeded to just...bless us. I cannot think of another way to describe it. She is one of those people who knows no strangers. She sent her daughters down to her vehicle to bring me up a huge bush of what I think are yellow daisies of some variety that she had just purchased (they are supposed to come back each year if they get potted correctly) and she invited us to Thanksgiving, informing us that her mother literally requests each year for them to bring as many people as possible. She insisted that Colten keep her number in his phone and asked over and over for us to call if we needed anything. Just a random stranger. And a good person. And a blessing, I know, so I am recording it here so I always remember her--her name was Heather.
Well, that's the housekeeping. And my hands can barely move. And this intense, impending sadness is settling over me, and I want to stop right now. But this is why I am writing this post. To get it out. To let someone know. Because it is real. I am beyond broken. I have contemplated suicide, laid in bed and willed myself to cease existing, felt like I would literally break into pieces of sadness and sickness because my brain is still here, and my body is so far gone and there is absolutely nothing I can do about it. The past couple weeks have been nothing but decline and bad news, and I am at my wit's end. I have never been in this place before. I no longer fear death. I can see the beauty of it. I have never, ever reached such a point in my life. I wish for it. I wish I had never had this transplant. I wish I had taken the few years I had left and lived my life rather than let my daughter become my caretaker, my husband my lifeline who must do every small task set before me other than put food in my mouth. And that may come next.
I don't know if I am supposed to be this way. The steroids that the doctors put me on drastically reduce muscular strength and ability, but patients are supposed to continue living as normally as possible, and are especially supposed to continue walking and moving as much as possible. The doctors watch my decline and say the steroids are terrible, that it takes time, that it will be months before they can completely get me off of them because my body is dependent on them now. I have to keep trying, have to "refuse to give in to my body's natural want to stop moving." The doctors seem to think it is my fault, and I can't tell if they are ok with the situation or think I should be in a different place. They passively threaten to put me in the hospital, but have stopped pushing outright. Colten has to go to school, I can't go to the hospital. And I can't take care of Aurora, so maybe I should just go to the hospital? I don't want to move. I just want to lay in a hospital bed and be fixed. I want hospital people to tell me everything will be alright, it's ok that I can't move, it is normal, it will end someday. Will it?
We are STILL stuck in a second story apartment, and I cannot make it up the stairs. I have nowhere to walk. Going up and down the stairs one time is all I have, and it breaks me for the rest of the day. And just a couple weeks ago I was still hobbling around the apartment, able to do menial tasks, but I have declined past that to where I can no longer do anything. I sit in a chair for the majority of the day and my husband cooks, cleans, takes care of Aurora, lifts me up and down and assists me to different areas of the house as needed. I cannot even turn myself over in bed any longer. I am still able to walk if helped up and stabilized, but I cannot be left alone because I can't get out of any chair in our home. We applied for a lift chair to help me while Colten is gone and have had no luck through insurance. It seems like the last transplant was just a dream. There was so much family here, so much help, so much financial care, people coming to see us and bring us meals and help in any way they could. This transplant is a nightmare. And I know, the world is a nightmare. Everyone is falling on hard times. I don't know what to do, Seeing family for just a few minutes is something I treasure beyond measure. I feel my little family is an island slowly sinking in a desperate sea and there is no one. There is no help. Monday--tomorrow--Colten has to go to school and I cannot get my daughter dinner. I have no way of getting up if I sit down anywhere after he leaves our house. His class is three hours. What if I fall over? He can't miss class. Life has to go on. I will be standing and praying and...praying.
I am worthless. I am a lump, a shell that is not even a human. What am I but something that takes up space and effort? That is breaking my husband? I don't know how he is going to go to school, I don't know how I will care for Rora while he is gone for his night classes that he must take. He had no idea what he signed on for when he said, "for better or worse, in sickness and in health," would he have said yes had he known? I hate myself everyday, I hate myself as he lifts me from each chair and as I have to wake him in the middle of the night so that I can use the restroom. Yes. I have to have someone help me every time I want to use the restroom, I can no longer just get up and go whenever I want. I can't dress myself. I hate myself as I sit and watch him fulfill every need around the house and take care of my daughter, who I think now thinks of me as something less than a mother, because I am not a mother. I cannot care for her. I wait for the day Colten just does not come home--and I would not blame him. But he is amazing. And he smiles every day as I cry and lay in bed, and he coaxes me out to the living room, and he does each task without complaint, and I look at him and do not understand how I have been given such a gift, and how he can be so incredibly amazing, and how he possibly has the physical and mental strength to get up and do what he does every day. And I hate myself. And I pray for release and help. And nothing comes back.
My daughter is a different person. She is so grown and mature. She knows I can't do anything, and does her best to help and learn new things whenever she can. She kisses my cheek and tells me stories as I lay in bed, she makes up songs about God and sings them to me while she strokes my head. I hope she will forget these days, I try to believe it will not be this way forever, but I fear she will always remember when she became more than I was, and I failed her as a mother. When she cared for me, and I was nothing to her that I should have been. My sweet, sweet girl.
Over the past couple weeks I have experienced incredible pain. I have woken sobbing in the middle of the night as my joints ached and my calves cramped in unstoppable spasms from the doctors lowering the amount of steroids I am on. The pain has finally stopped, but now I cannot move, and before I could. I would rather have the pain. And as the amount of steroids continues to go down, the pain may return. I look like a freak. Children literally stop and stare at me. The steroids place fat cells all over your face, shoulders, and stomach, so I am like a walking pillsbury-dough-girl with tiny arms and legs that barely hold the overwhelming grotesqueness taking over everything else. It shouldn't matter, but it does.
I met with a physical therapist this past week. She assured me she has dealt with patients like me, that I will be a person again. She is not like the doctors. She wants me to never be going up stairs. She wants me using a walker or a cane, believes a lift chair is necessary, and cautioned me this will take time, and that I should be doing everything I can to conserve my energy for moments that I need it. "Conservation of energy" is her motto. She wants me to start out with two 4 minute workouts every day. Part of me is relieved that I will not have to move more than that, part of me is crushed knowing how little I will get from so little given.
I was diagnosed with a bacterial infection in my stomach last week, which is still not under control. Thankfully I did not have a fungal infection, I may still have GVHD in my gut adding to the problem, but no one knows for sure. I don't want to eat, then I don't have to worry about my stomach anymore. I have to have another bone marrow biopsy at 100 days because the doctors want to thoroughly check me over. It has been almost 100 days. At this point in my last transplant I was getting ready to go home, now, I cannot move and I wish myself into oblivion each day. I wish I had never done this. I cannot find God, I cannot find peace, and I cannot find purpose. And my cancer still resides. The doctors say, "It's ok, we don't expect it to be completely gone at this point, and the fact that it has not grown with the amount of steroids you are on is really amazing for your type of cancer." It's not amazing. It's still there. I can't move, I am not cancer free, I am nothing.
Please pray. Please pray and pray and pray. For our trailer selling, for moving to a first-floor apartment, for help, for support, for literally getting through tomorrow because I don't know how we are going to get through it, for a lift chair, for movement, a real life again someday. And more than anything, anything else, please pray for my husband, for continued strength, for blessings, for everything good. Please God, let good things start to come.