Sunday, August 30, 2015

Day +88

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. 

Friday, July 31, 2015

Day +58

The last three days have been a whirlwind of emotions and nonstop tests at the hospital, and I am sitting on my couch tonight feeling an odd mixture of anger and yet huge amounts of peace that the week is finally over, conclusions have finally been made, and this weird, surreal experience of the past few days is finally behind us. The week started out like any other week, just getting through the days. Aurora came home Monday and it was wonderful to finally get the family all back together and start getting into a routine again. On Wednesday we went in for my typical clinic appointment, expecting nothing out of the ordinary, and then sat dumbfounded as nurses and other medical personnel started to freak out over the fact that my oxygen levels were sitting around 89 to 88. This is low, my oxygen is usually around 97 or 98 (as it is for most people), but my oxygen levels have been decreasing, and that is not unexpected with transplants in general as there is usually always an impact on the lungs due to radiation and chemotherapies, and my oxygen levels the week previous had only been around 92 or 93, so the drop was not substantial. What's more, in Utah, insurance will not even cover an oxygen machine for a patient unless their oxygen level is consistently below 87 as it is not considered necessary to give that patient more oxygen until that time.

So, we sat in our room as nurses came in and out hooking me up to different oxygen masks and bustling about trying to see if my oxygen levels would rise. They did not. At this point I understood that they were getting worried because my oxygen levels should be rising with the increased oxygen, so obviously something bad was happening with my lungs, but I still had no idea what I was in for. What I was in for ended up being an entire day at the hospital having all kinds of fun tests run and huge needles jabbed into arteries and other areas to try and figure out why my lungs were suddenly not working. At this point I should interject that there is a medication I was on, Dapsone, that I was also on during my previous transplant and had issues with, and the doctor's initial reaction was to test whether it was causing the problem. They did a gas/blood level test of some kind (the needle getting shoved into the artery--fun stuff) and got the results back immediately that my red blood cells are destroying themselves, which is definitely preventing oxygen from getting into my blood and could be the complete cause of why my oxygen levels are low. Dapsone causes this in many patients, and when one hears hoofbeats...well, I tend to think horses, myself. For whatever reason, my doctors were unwilling to accept Dapsone as the primary cause, and while I do respect the amount of attention I have been given the past few days and the amazing and utter concern and care put into me, I can't help feeling like the hospital just got a huge pay day(s), I have been put through a ringer that I will not be forgetting for quite some time, and I just want to hit someone, really, really hard.

The doctor seeing me on Wednesday came into my room with a coy little smile on his face and asked me, "Would you mind being our guest for a few days? I just feel like we can't send you home right now, without knowing the exact cause of the drop in oxygen levels, and quite frankly, it is a lot easier to get tests run when you are inpatient, rather than outpatient. When you are outpatient, they think that you are just not really sick, and it can take days or weeks to get tests run, whereas when you are inpatient we can just get things moving and they get things scheduled." I stared at him. I just stared. I had just walked into the hospital, felt completely fine, and he wanted to ADMIT ME? To make SCHEDULING easier? I HATE this place. Just the thought of being stuck in a room again, monitored every minute, I started to panic. Why did I move to live 20 minutes away from the freaking hospital if they have to admit me in order to schedule tests? That is in no way ok, and that is not a reason to admit someone to a hospital. And I am sure the thousands of dollars my insurance would pay to have me staying there would not hurt anyone's feelings. I blurted out, "Are you serious?" He smiled and nodded, like it was absolutely no big deal. Get admitted to the hospital for a few days, a week, he had no idea. Just do it. I tried not to cry. Colten asked if we could have a few minutes to discuss things, as he was surprised at me at the sudden need for admittance.

And my amazing husband came to my rescue once more. We talked, he calmed me down, he agreed that it was ridiculous that they wanted me to stay, that it was better for me mentally to go home and it was ludicrous to admit someone just to get tests run. And when the doctor came back in, he put his foot down and said that I was leaving, and they needed to figure out how to get the necessary tests run with me as an outpatient. The doctor got huffy, and said that he would need me to sign a paper saying I was refusing his medical counsel that I should be admitted, which made me feel a million times worse and like I was making a terrible decision, but then I reminded myself of his entire argument being nothing about my physical health but rather poor scheduling practices, and I stayed strong in my decision to go home. After today, I am so thankful for that decision.

The doctor actually told us he was "grasping at straws" and that he expected all the tests they ran to be negative, and amazingly enough we even managed to get many of those basically worthless tests ran on Wednesday (without being inpatient even...). When my oxygen levels rose slightly before leaving on Wednesday, the doctor decided I didn't even need to sign that slip saying I was going against his medical advice, and he joked to himself about how "things seem to work out." Then, even more amazingly, we got the rest of the tests ran on Thursday, but we ended up spending almost the entire day at the hospital with a 6-year-old, who was absolutely extraordinary, but is getting very sick of being at the hospital (and oh man, I don't blame her). Thursday brought with it the dreaded possibility of a fungal infection in my lungs. This was not something that was brought up at all on Wednesday, and something that is very scary in bone marrow transplants, particularly when the patient is already on high dose steroids that can make fungal infections worse. So, a lung specialist and an infectious disease doctor were brought on to my case, and more tests were run. I was sent home with oxygen, although I never technically hit 87 for long enough that it was warranted. We tried to sleep last night, praying that my lungs were clear of infection or that it could be halted. Maybe I should have been admitted after all. What was going on? Did anyone have a clue?

That led to today, when I was supposed to meet with all these different doctors and answers were supposed to finally be given. The lung specialist was underwhelming, to say the least, and he was the only doctor I ended up meeting with. The infectious disease doctor would not answer his phone, and the other doctor (the same one who wanted to admit me) ended up scheduling a new patient meeting, which takes hours, right during the same time he was supposed to meet with me. The lung specialist decided to do one more (absolutely worthless) ultrasound of a scar on my neck, just to "cover every base and make sure it wasn't vascular," go over a brief history of everything that has been done to my lungs over the past 12 years, and then tell me, "You have no fungal infection of any kind. There is no tumor activity. Your lungs are scarred exactly like they were two years ago from the cancer that was in the left lobe. We have no idea why your oxygen levels dropped, except that it was probably the Dapsone. Thanks for being a mystery, we are not going to do anything, the Dapsone should be out of your system in about 10 days."

Oh, and he wants to meet with me again on Tuesday, just since he got brought in on the case and needs to have a follow up appointment. One more pay day. So much time. Unnecessary pain. Worthless worry about fungal infections or worse for nothing. Hours that Colten could have been shadowing and preparing for school, literally almost an entire week of his time, all wasted on meaningless tests. I am so relieved it is over, it was just the Dapsone and the problem will be fixed in a few days, but I am so angry about how this whole situation was handled, and what the last few days have cost. I am choosing to be grateful that these doctors are excessive in care rather than negligent, but if something of this nature arises again, I hope it is dealt with a bit more effectively and efficiently. The emotional strain alone that could have been avoided, let alone the wasted time, makes me sick.

But, it is over, and I am well enough. The taper of my steroids continues, and I appear to be tolerating it just fine, which means it will keep going at a fairly steady pace, thank goodness. Some days I actually feel a little bit of strength coming back into my legs and arms and I just rejoice in the smallest feeling of power. It will come. I made dinner for the first time since this all started on Wednesday and it was empowering to do such a simple thing, and so fun to let my little girl help me. We made sloppy joes and she created the sauce all on her own. She didn't end up liking it, but it was actually quite good, ha, ha, ha. Tomorrow we head back to Idaho to finish cleaning up the trailer and to store a few last items. Hopefully we get it sold here in the next couple of weeks. I am just looking forward to some productive days, and some hospital-free days. And, hopefully, our apartment opens in the next week or so, and we can finally get all settled. All good things. Thank you Father for getting us through the past few days, for letting everything be alright, and for brighter days on the horizon. I hope everyone has a blessed night.

Friday, July 24, 2015

Day +51

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. 

Friday, July 17, 2015

Day +44

I am beginning to experience every day as a series of obstacles and opportunities. On the one hand I feel that everything before me is hard and out of reach, and on other hand I feel the possibility of improvement and a life regained if I can just put forth enough effort. Walking between the two cliffs of emotion is exhausting; I have never gone through anything like this before. I truly thought after 12 years of battling cancer there could be little left that would be new, but it seems there is always something to be learned.

The past year has been a lesson for me. I have learned to live and get around without doing things that were simply my second nature. It started in my spring semester of 2014 when I used to bound up the five flights of stairs to all my business classes without a care in the world. As the months went on, I started to realize that my legs were just not responding when I told them to go up. I had a class that was moved to a higher floor halfway through the period, and I burned with shame as I slowly made my way up the stairs and saw that I was holding an entire class back from going at even an average pace. I stopped taking the stairs, and rode the rickety elevator the rest of the semester. I tried to act normal and be the best mom and wife that I could be as I lost all my upper arm strength and could no longer lift Rorie up for a hug. I could no longer go down on my knees without having someone help me back to my feet. I couldn't reach above my head. I had trouble writing. I was losing strength and mobility every day. I couldn't move.

Doctors pronounced this "chronic GVHD" and said that it was rare, but that GVHD could impact muscles and tendons and all the other things I was having issues with. Because we knew that my cancer was back and that I was eventually going to have to pursue more treatment, it was decided to just let the GVHD be and see how things progressed. It is still the hope that this transplant will leave me GVHD free when it is all said and done. So, I learned. I figured out how to do all the things I used to do in new ways, and I made the best of my many physical limitations. Or, what I thought were many physical limitations.

I am currently trapped in a body that wants to do little more than breathe. As far as I understand it, this is due to a combination of GVHD, how long I was in the hospital, the lack of nutrition I had for awhile, and the heavy doses of steroids that I am currently on to help control the GVHD. Regardless of the causes, I am stuck with the consequences. Thankfully, some of the symptoms should get better as I get off the steroids and the GVHD goes away (such as the extreme fatigue and issues with eating), but everything I have lost I will never get back unless I rebuild it. That seems so far beyond me right now. I can't open a pill bottle, or a water bottle. I could literally spend an entire day trying with no success. I have absolutely no muscles in my hands. I can barely lift myself from a chair, and I have to be careful when I stand up that I don't lean too far forwards or I will fall and I cannot get back up. By the end of most nights, Colten just picks me up from the couch and helps me to bed because I have absolutely nothing left to give.

I do not understand how to be this person, and I feel like I should be doing more. Like every day should be easier and I should be getting stronger, and yet I feel more tired and more weak. Simple tasks such as laundry or vacuuming the house are so taxing I have to lay down afterwards to regain strength. That is ridiculous and unacceptable. When I try to stand up after sitting in a chair and my legs lock and refuse to lift I just want to scream! Why can't I make my own muscles work?! It is such a simple thing to just stand up! As I face the 18 steps that lead to our apartment every day I will myself to just race up them, and then hold back tears as I slowly grunt and pull my way up using the railings and every bit of strength I can funnel to my legs. I can't do anything inside our apartment because all the cupboards and appliances are low and if I bend too far over I lose my balance. I want my life back. I cannot be this useless lump that needs help at every turn and is incapable of truly the most basic tasks.

I think back to just over a year ago and wish I was still that person. I weighed 100 pounds more, and I was powerful. I could do anything I wanted. When we went back this past weekend to visit my sister, my little nephew ran up behind me in a store and grabbed onto my hand. He wanted me to swing him around like I always used to, his fun, awesome auntie that always played with him. Instead, the simple momentum of a 6-year-old grabbing my hand was too much and it was everything I could do not to land on him as I headed towards the floor. I felt myself hit the ground and prayed nobody was watching. I tried with everything I had to get up, but had Colten not been there I would have been stuck on the floor. My sweet nephew cried because I fell and he could not understand that it was not his fault at all. I am but a wisp of myself now, and the journey back is going to be a trial like none I have ever undergone, I know.

At my clinic visit this week I met with (yet another) new P.A., and she told me about a cancer rehabilitation program that the hospital is starting to work with that is intended for people just like me: people undergoing bone marrow transplants and suffering from GVHD. The program focuses on helping patients regain strength and mobility, as well as preventing further decline. They actually work with all cancer patients, but they have special programs for bone marrow patients. I am terrified and excited to start. We are supposed to call this next week to see if insurance and so forth will cover everything. I know that it is going to be very hard and very disheartening in so many ways, but I also know it is a chance to become who I used to be, and I want that more than anything in the world right now.

My doctors are most worried about me continuing to decline right now, particularly since I am still on the steroids. Their worries are compounding my worries, and so I feel like I need to push more and more each day, and yet I feel worse and worse each day. I was reading the pamphlet from the rehabilitation program and it stated that 75% of cancer patients who undergo major treatments are never able to fully enter the work force again, or regain what physical abilities they felt they previously had. That number was staggering to me. It went on to explain that this happens because cancer patients do not go through the necessary physical (and mental) therapy to regain what they had, and thus the importance of the program, outside support, and, especially, self-motivation.  It talked about the internal battles patients must face, and the very much uphill climb that regaining life can be. It is daunting. I have truly been so blessed for so long having never faced anything like this before.

I can do so little, and it takes so much effort; I can hardly remember what it was like to be a "normal" person. To be able to chase after my daughter. Wash dishes. Bend over. Stand up. Open a water bottle. Throw my arms over my head. Sit on the floor and get back up again. Walk steadily. Go up stairs. Eat whatever I want without being sick. These things will never happen over night. I will be striving towards them for a very long time. And the journey will have (and already has had) many days that I want to just give up, that I feel there is just nothing left I can give. But I just can't accept that. I can't be imprisoned in a body that was meant to do so much more. God gave me a vessel to live through, not be trapped in. It is meant to serve me, it is meant to move, and it is going to do those things again. But I am scared. And overwhelmed. And inadequate. How will I ever have enough grit to get back to all that I lost? Well, I guess I can either find it, or stay as I am. Grit here I come.

On a strictly transplant note, things are progressing fine. My clinic visit this week went well, and I was able to leave the hospital, once again, without any transfusions or other interventions. I am still stuck on the high dose steroids until my stomach stops being such a bother about eating. It is starting to accept most foods, but not as well as the doctors would like. I was advised that maybe next week we could start to taper down my dosage, but it might be two weeks if the gut issues persist. My face is starting to swell from the lovely fat deposits that that steroids leave in your cheeks and I feel hungry all the time from the steroids as well, yet can't digest much. They also increase muscle weakness, so I am really hoping to start a taper this next week. We shall see. Otherwise, though, the GVHD seems to be under control and everything else is stable. 

On such a brighter note, it has been a wonderful week. The best I have had pretty much all summer. And oh my heck, this summer is pretty much already gone! We spent the weekend with my sister's family and my mom, and we got to celebrate Christian's birthday (which he said was "the best ever!"). When we got home, my parents paid for us to go to the aquarium and celebrate my birthday and it was so much fun. Aurora had an absolute blast! The newly added shark tank was definitely everybody's favorite attraction. Then, with Aurora gone to a family reunion, Colten and I finally got to celebrate our anniversary with a movie and Joe's Crab Shack (always wanted to try it, very expensive but good for a one time visit). It was so amazing being out of the hospital and trying new things, just being a person about the world again. To top everything off, my sister's adoption of my amazing new nephew was finalized today and he is officially and forever part of our (crazy!) family. I wanted so much to be there, but I got to take everything in via speaker phone and I am just so thankful he is finally their's (our's). Tomorrow we are going to pick Aurora up and see some family at the reunion, which will just absolutely make this week for me. I am so thankful for the respite.

So. The rehabilitation journey begins. I am going to kick GVHD's butt. I have already kicked cancer's butt. I am going to become who I used to be. It won't be tomorrow. But tomorrow is a good start.    


Thursday, July 9, 2015

Day +36

It is so good to be home. It has only really been two days, but the seemingly endless hospitalization already feels very far behind me. It is my fervent, nightly prayer that it remains that way. Tuesday was an unexpected and interesting day. I woke up wanting to go home, but already accepting that I probably wouldn't be. My stomach is having the hardest time dealing with the GVHD, and I had only been taken off of I.V. nutrition that very morning. I still felt crappy when I ate, and eating was becoming more and more of a battle. I was also having trouble getting enough liquid down. So I wanted to go home, but I was willing to be a patient for one more day. I showered, went on a walk, ordered breakfast (a plain bagel and chicken broth, yum!), and switched on the television. Then in strolled Jeff. Ah, Jeff.

I sighed inwardly that Colten was home and not around to head him off, and prepared for his inquisition and checkup. After his typical million questions, he gave me a once over and commented that he was fine with me going home, but he was not sure how Dr. Peterson would feel as he tended to be much more cautious in these types of situations. They would discuss it in rounds. I nodded my understanding, having already spoken to Dr. Peterson the day before, and contented myself that Jeff was finally leaving my room and I could get back to my day. End of story. Life went on. Then, not half a show later, Jeff came barreling back into my room talking about getting prescriptions ready and needing my current medication list from Colten because it looked like I was going home! As I mentioned, the news changes around this hospital with the shifts of the wind.

Jeff was excited. Adamant. Clear. He was sure Dr. Peterson was fine with the situation. So I called Colten while he was still in the room and asked for him to bring my medication list, as well as to come pick me up. Jeff whisked himself away, and I started to pack up the few belongings I had. I was not mentally prepared for this hospital stay. And I was never able to overcome it mentally, really. It was a very long, very ill-tolerated ordeal, and I had done very little to try and make it better. I did not bring my own blankets or pillows, nothing to decorate the room as my own. I greeted the hard hospital bed and slick linens each night like a stranger leaving in the morning, and I kept my only bag of clothes tucked away in the closet, ready to leave at a moment's notice. My laptop was the last necessity to grab and add to my small pile. I was packed and ready for home in minutes, lining up my few possessions on the bed to wait.

And then the miscommunications began. This hospital runs in levels. There are "patient care assistants," which are basically C.N.A.'s and such who come in frequently and take patient vitals, check blood sugar levels, change linens, and run errands such as getting patients fresh water or towels, etc. Then there are nurses who oversee medications and all other higher callings. Then there are the "midlevels," which consist of L.P.N.'s and P.A.'s, and they come and meet with patients every day, do a checkup, and then report to the highest level: the doctors. There are supposedly rounds that take place every morning that all the midlevels and doctors attend, as well as any nurses who are able, so it is a complete "care team" and it sounds like this great setup. But it isn't. And as the levels continue, so do the miscommunications, it seems. In any case, my nurse came in suddenly to inform me that Dr. Peterson was, in fact, not comfortable with me going home yet, and that everything was kind of on pause until he came in to meet with me. He basically told me that everyone was waiting for Dr. Peterson and I to "hash it out" and see where things landed. It was obvious who he thought was going to win the battle, and it was not me.

Colten had already arrived by this time, and I sat down in my chair stunned at the (once again) change of information. I was angry. I had already packed. I had been told I was going home. I was already committed, already gone in my mind. I looked at my nurse and told him, "I will definitely be talking to Dr. Peterson. As you can see," I motioned at my belongings, "I am ready to go." He smiled and ducked his way out of my room. Colten fumed. I seethed. Then, Jeff made his way back to my room, and proceeded in his oh-so-Jeff manner. "I'm sorry if you did not understand or feel that there was a miscommunication," he said calmly to me. It took everything in me not to punch him in the face. Of course, I did not understand, it could never be that he was simply at fault. I looked at him and said, "You know, I am getting really sick of all the misunderstandings that seem to happen in this program. They've been happening a lot, particularly during this hospital stay, and I am tired of it." Jeff smiled and nodded and basically backed his way out of my room, letting me know once more that I would have to talk with Dr. Peterson and that it was out of his hands.

So we waited. And Dr. Peterson arrived. I actually really like him. He's the reason I came back to a hospital I detested, and he does have very genuine, caring qualities that make me trust him and allow him to defuse situations such as the one he found himself in on Tuesday. His amicable disposition radiated from him as he sat to talk with me, and he laid out his fears if I were to go home. He mentioned that staying one more night might prevent me having another hospitalization, that he was not totally comfortable with the progress I had made, but then he gestured to my bags, "I understand there were miscommunications and that you are ready to go home. I don't want to give you a mental setback. I know you have been through this before, and that you will call to report it if you have any symptoms and come in. I feel that you are a good enough patient that you can go home, but you must be very careful." I loved him in that moment. I felt like I should apologize, do something to let him know that his beliefs of me were justified. I tried explaining that I was just mentally exhausted and needed to go home to heal, to which he replied, "You are on a lot of steroids. They are going to mess with your emotions." Maybe it was the steroids, but my love was suddenly gone. I went from a cynical nurse telling me I was going to have to have a showdown with the doctor, to an idiot P.A. telling me that I misunderstand everything, to a doctor telling me I was just an emotional mess. What is wrong with these people? I held my tongue, nodded my head, and bided my time. There was nothing else to say or do. I just needed to leave.

And I finally did. And I've been trying to take it easy, make sure I am eating and drinking enough, and just doing my best to get through the days. The days are so much better here. I had labs this morning, and it was the very first time I was able to leave the hospital without requiring a transfusion or some other medical intervention for an entire day. My body is slowly starting to work like it should. We are going to make a quick trip to visit my sister this weekend for my nephew's birthday, and then Rora is going to go and stay with her Grandma Long next weekend for a family reunion. She is so excited for her first big family reunion! I am just taking it one day at a time. We will hopefully be moving down to a first story apartment in the next couple of weeks, and until then there is just not much for me to do, and I think that's fine. I am going to take some time to recuperate, and let this GVHD calm itself down. Hopefully it has already gone crazy and killed all my cancer (that's my firm belief anyway). No more hospital stays for this lady. The free side is so much sweeter. 

Monday, July 6, 2015

Day +33

I'm still here, still not sure when I will get to go home, but today was a better day. My purpose in this life was to be a mother and a wife, and I was finally reminded of that. I never wanted to be these things. I remember imagining as a teenager what it would be like to be a mom. I couldn't understand why anyone would want to be responsible for another human being for the rest of their lives. Why anyone would want to have a child walking around, making his or her own decisions, and being able to do nothing but love that child and continue praying that life would be kind and keep that baby safe. This was insanity. Before my first bone marrow transplant, doctors asked me and my parents if I would want to freeze some of my eggs so that I could have children in the future. The thought was laughable. I literally remember thinking, "Heck no! Burn them all!" And marriage? Why tie yourself to someone that you would likely just bicker with and detest for the rest of your lives? Better to have a career, my own home, and surround myself with furry creatures I could love and tend to. That was my plan. My terrible plan.

I have already talked about how grateful I am that God had a different path in mind for me. He slowly and methodically led me to Colten, and then abruptly and unapologetically gave me Aurora, and He altered my "perfect" map of life until it was adjusted to its proper course. And I know I would not be here had things gone my way. The past couple weeks have been incredibly hard. My faith and spirit have been continuously tested and tried, and found wanting. The losses and setbacks have come without pause and it has felt hard to simply breathe, let alone maintain a positive attitude and continue the war against my disease. This past week was particularly bad, and I thought it was mostly due to the timing relating to my transplant and this special time of year, but I think it was truly because I was forgetting my purpose.

My sister sent me a text message last night reminding me that I had to walk, I had to get up, and I had to keep trying. I felt a slow burn of anger, quickly replaced by my now typical impassivity. I watched the television. I wallowed in my loneliness. I harbored my resentful thoughts about the world outside my room. And then Aurora walked in the door and the world seemed to shift. The worthless, pitiful woman I was becoming shrunk away in an instant. That woman cannot exist in Aurora's eyes. I am her mother. I am strong. And I will be the living example of what women can achieve, what faith can do, and what hope can bring if we simply reach for it. I cannot fail her. She smiled and ran to embrace me and I remembered that I have so much to do, so much to live for, and so many reasons to fight. It was like walking out of a fog. She cried a little. She missed her cousins. She was tired. And mostly, she missed "our old life." Last night was the first time I have ever seen my daughter break down about my cancer and our circumstances. We have been warned and questioned by endless professionals about her mental state, how she handles my sickness, if she is alright. Our answer is always a resounding "she's fine," as she takes everything in stride. Honestly, I have been actively fighting cancer for virtually her entire life. Coming to chemotherapy with mommy and hanging out at the doctor's office are things that she considers to be normal, every day activities. But the past months have worn on her more than I ever knew.

She asked to go home. Back to our trailer. She doesn't want to visit anymore family (something that has never troubled her before). She doesn't want to go back to our new apartment. She just wants to go home, and, more than anything, she wants mommy to come home, too. These words both shattered and mended my breaking heart. It is a feeling unlike any other to be a mom (or parent, in general). To know that there is a little person who depends on you for absolutely everything, and sees you as a super hero (for a time, anyway). To hear my beautiful girl voice how much she misses me and wants me to come home gave me new resolve, and fixed so many of my broken pieces. But it also felt like falling through glass to know how hurt my daughter has been, how sad and confused. I felt like a terrible mother for seeing only my own trials without considering what she might be going through. We have sent her to stay with so many different family members, I honestly thought she was probably just having a heck of a time vacationing and hadn't a care in the world. It turns out my little girl is growing up, and is starting to see and understand more of the world than I gave her credit for. I am proud and crestfallen at the loss of that innocence.   

So I held her and stroked her hair. I told her how much I loved her. And I vowed to leave this place so that I can be with her, and make a new home that she can love and feel whole in. We went for a walk. It was hard, and I couldn't make it very far, but Colten held my hand through each step and Aurora marched resolutely beside me. I was made to be with these people. I was put on this earth to love and care for them. How could I ever forget such a thing? As they walked out my door once more to head to the apartment, I memorized the feeling of being left behind. Of being locked in and watching my loves walk away. I hate it. More than anything in the world. And I cannot take it anymore. So I got up this morning, and I walked some more. I have not slept well for weeks. I average 2-3 hours a night in the hospital, if I am lucky. My muscles are deteriorated, my gut is in knots, and I am surviving on fumes, but I walked. And when my beautiful girl and wonderful husband graced my room with their smiling faces this afternoon, we went and walked some more.

The nurses noticed. Happy faces waved at me and I could see relief in so many eyes. People I had walled myself away from, people I have come to care for, looked at me like I had been in a coma and was finally waking up. Aurora danced and skittered around the hallway, fresh with new life after a good night's sleep in her own bed. I am remembering what it feels like to move, to try, to live. The doctors would not promise me that I could go home tomorrow, but it looks like Wednesday is a very real possibility. They mentioned they had seen me out and about and seemed to take that as a very good sign. I ate protein for the first time in almost a week. My stomach is cramping and complaining and I am exhausted from the day, but I want to go home. It would probably be better if I stayed tomorrow and gave my body a little more time to adjust to food and self-nutrition again, but I want to go home. So I am going to get up again in the morning and walk, and see what the doctors say in the afternoon. I am praying for complete healing of my GVHD, and a body that is as ready to be free of this hospital as my mind already is. And though I know it probably will be Wednesday before I break out, I am hoping for tomorrow.

And I am so thankful, so incredibly--beyond any words--thankful for my daughter, and my husband. I am so thankful that God gave me such purpose in my life. And I am grateful for sisters who encourage me and push me as necessary. I am touched by the family that continuously comes to see me and help whenever they are needed (today Marcine and Troy visited, which was such a blessing). I am awed by the amount of people who care for and love me and my family on a daily basis. The quote inside my tea bottle today was by Confucius, "Everything has beauty, but not everyone sees it." I suppose this is true, even of my recent obstacles. I wish I could say I have learned so much in the past couple weeks, or that they changed me for the better and I am happy to have lived them. I am not. I wish I could erase them entirely from my life. I still miss my dog, and hate that I am here again. Today, Colten brought me Kaed's ashes, and I took some comfort in knowing I will always have him with me. But I see no beauty. However, I am happy that I am waking up, and that I am going home. I  know I can continue to do what is necessary, and that I will be triumphant over my cancer in the end. And that is beautiful. Maybe it is not so much that we must see beauty in everything, as long as we can see the beauty that comes from everything. I would not walk these past weeks again. But I am looking forward to a beautiful tomorrow, and better days ahead.  

Sunday, July 5, 2015

Day +32

Well, another birthday and anniversary have come and gone. My second favorite time of year (Christmas will always be the first, of course) has passed by in a blink and I have missed it wasting away in a very tiny room hidden away around a long-forgotten corner of an old hospital. I am tired. More mentally than physically. I am finding that I have no mental fortitude left. I came to the hospital angry with myself, thinking I had somehow managed to get an infection by eating improperly washed or cooked food, or rubbing elbows with a sick stranger, but the anger gave me fuel to function. I vowed I would be out by the next day--just as soon as they got my fever under control. The doctors obviously had different plans, and my anger dissipated into disbelief and apathy as the days continued to stretch out and it became more and more apparent that I wasn't going to be leaving anytime soon, and it likely wasn't an infection that I had somehow caused.

I turned on the T.V. I only watched the television one time during my stay in 812, and once I saw that it was broken (a line ran through the middle) it drove me crazy and I opted to spend my time doing other things. The T.V. in 807 works perfectly. It is on most of the day. I don't really watch the shows on the screen, I just like the noise in the background. Sometimes it puts me to sleep, sometimes it drowns out the nurses and their lectures, and sometimes it is just a drone in the back of my mind as I stare at the walls and wish myself far away. I don't think the nurses like me anymore. I have a hard time being overly kind, or even civil, while they write "personalized care goals" for me on my white board (goals that I am supposed to set, but they feel the need to write instead due to my lack of interest) that include things like "walking around today." I still haven't walked around. I can feel my body weakening along with my resolve, and I know I am becoming the patient that I swore I would never be, the one that wastes away in a room. Yet here I sit.

I can't walk the halls. I can't be a transplant patient again. This sounds absurd and would make sense to no one but the other voices in my head because I have never stopped being a transplant patient, but putting on that stupid yellow gown, slapping on a pair of gloves and covering my face in that horrid mask to walk the same hallways I walked for 23 days is simply too much to ask. I can't bear it. I was only out of the hospital for just over a week. And it was a terrible week. And then I was back. Here. Away from my family, my home, my bed, my privacy, my everything. It was not enough time. I can't be that patient again. I can barely carry on a casual interchange with my nurses and aides (that I actually like). I find myself giving stunted answers and staring at the floor, my computer, the T.V., anywhere but their eyes, which might encourage them to continue speaking to me. I just can't be here anymore; I need to go home.

The past days have made me someone new. I don't recognize the gaunt face that stares back at me in the mirror. My cheek bones stick out too far and my eyes appear too big for my narrowing face. The all-liquid diet the GVHD in my gut requires has reduced most of my body to nothing but bone, and I cringe at my sallow skin, knobby knees, and other new angular proportions. I look like a cancer patient. A dying one. I've never really looked this way before thanks to genetics and the extra layers of padding I have always tended to carry. Regardless of the cancer treatments, I've always managed to have body to spare. It seems that I carried quite a bit of strength and motivation in those lost extra layers, as well, because I find my own thoughts to be as foreign as the body they inhabit. I cry over the smallest things. I cry in front of nurses. I cry because I can't do anything else. I feel utterly incapable of caring for myself; I hate being alone. Which is why I am writing, because Colten had to leave today--for the whole day--to finally go and pick up Aurora. And I am broken. I cried when he left. He won't be here all the time anymore. He has to be at home and be a dad again, and I will be here. Alone. Drowning. Fading.

Who is this frail woman? How is it possible that one week's time has reduced me to this? How can a decade's worth of determination and faith evaporate in days? I don't know, but I am struggling to hold on to what remains. I have never felt so...defeated. I try to pray, but hear a deadening silence I have not experienced in many years. Is He even listening? I can't finish my thoughts, but only hope He can feel my sorrow and my need, my desperation for this particular part of my trials to end. I was supposed to be going home tomorrow, but the doctor stopped in to inform me that that was a bit too optimistic due to how my gut is responding to the GVHD. He is hoping for Tuesday, perhaps Wednesday. His words fall like ash on my already sick stomach. Maybe next week. Or the week after. Maybe months. Who knows? There is nothing I or anyone here can do.

Yesterday drove me to the depths. My birthday is special. It is a victory I cherish each year. But the rest of the world doesn't care. It is something that is meaningful only to me and to my loved ones, and so I can celebrate it anytime because the rest of the world does not take any part in it. The 4th of July is different. Yes, it is my anniversary, which means nothing to the rest of America, but it is also so much more. It is my favorite holiday besides Christmas. I love my country, the men and women who fight (and fought) for it, fireworks, good food, family; I love every single thing about the 4th, and I love that all of America comes together to celebrate it. Getting fireworks every year for my anniversary is just a huge bonus. It is done once a year. There is no "do-over." My chance to celebrate it this year is over and wasted in a hospital room.

I poured over Facebook yesterday looking at pictures of people at parades and with their families. Jealousy and sadness reared their ugly heads. My favorite thing about the 4th? My absolute favorite? The memories. The general feeling of happiness that comes over me when I think about the day. My family has always gone to Idaho Falls and watched the Melaleuca Freedom Celebration. Sometimes we would go to Driggs and watch the hot air balloons, or take in a parade, but we would always end up in I.F. on the river bank (in the scorching sun) most of the day to get a good spot for the fireworks. We would play games, each junk food, sun bathe, talk, even occasionally take in a minor league baseball game when my dad got tickets from trading work at his print shop. We would bicker and banter and sometimes the day would drag on forever, but then it was finally time. The sun would set. The temperature would drop. People would stop talking and walking; my sisters and I would cuddle into our blankets. And Classy 97 would begin its patriotic soundtrack to the beautiful fireworks display cascading over the river. For 30 minutes, everything was perfect.

Not yesterday. I had some sort of reaction (possibly? Doctors still have not determined 100% what happened yet) to my blood transfusions on Friday that left me with intense lower back pain. So I spent most of the 4th in bed with an ice pack on my back, half-watching movies with Colten to try and pass the time instead of thinking of all that I was missing in the world outside. Obviously, traditions have changed a bit, but Colten and I have made it a habit to get back to Idaho Falls every year, one way or another. I really thought this year would be no different. But it was. Colten knew I was upset early on this week and talked to the nursing staff about taking me somewhere in our car to watch some fireworks, but this was not well received due to insurance liabilities, or some other such nonsense administrative staff hands out so they don't have to deal with any sticky situations. The staff knew we were upset and so concocted a plan to take us up on the roof of the hospital to watch the fireworks displays all around Salt Lake. This sounded amazing at first, but ended up being a roller coaster of emotions all week long. Some days the nurse came in and thought it looked like security would allow us to go up, other days it appeared that it was not going to be possible. Had it been our idea I would have understood the back and forth, but since it was instigated by the hospital staff I started to feel more and more bitter towards the people and the program here for proposing an idea that could not be brought to fruition. It seems to be a trend at this hospital that everyone says a different thing and no one really knows what is going on. It is a trend I am sick of in both my medical care and every other aspect of being involved here.

Anyway, we spent the day not knowing what would happen with the roof situation. The charge nurse brought us treats from our favorite restaurant, Kneaders, which I could not eat due to my stomach, but the thought was incredibly sweet. I tried to get my spirits up and appreciate the small things happening around me. Around 8:00 last night my nurse came in with the news that security would not allow us on the roof. She was quick to apologize and suggested that she take us to floor 7 where construction was taking place. It was empty for the holiday and had great windows for viewing, she assured us. By that point, I was honestly too depressed to care. I reiterated all my bad thoughts about this hospital in my own mind and tried to care what was flashing across the T.V. screen. About half an hour later, my nurse and two new faces showed up to inform us that they had pulled strings and we were going on the roof after all! The constant change of information had made me numb. I felt a small amount of elation, a bit of a care, but the week had already worn most of me away. At least I was getting out of my room and going on that walk everyone kept pestering me about.  

We were accompanied to the roof by Brian, the head security officer, and Nina, my nurse, should anything happen. They brought us chairs and an umbrella in case of rain, and I was distantly touched by their gestures. The height should have been dizzying, but Brian switched off all the lights so we could see the fireworks and I realized I was not afraid of a ledge for the first time. I stared out over a city absolutely full of light. Hundreds of thousands of blazing lights everywhere, a swell of people all around us. It was beautiful in its own way, but nothing compared to a country night full of stars. And then the fireworks started. It looked like the city was exploding. Celebrations were beginning all around us, from behind the mountains, to the middle of the city, off along random streets, at the baseball stadium, even at houses right near the hospital. They were everywhere, and yet far removed from us. We couldn't hear a thing, just see the explosions. Colors. Sparks. Light. A city on fire for freedom and life. The two things I crave most.

It was beautiful. And I am very grateful to the staff and to my husband for trying so hard to make a crappy day something slightly better. But it wasn't the same. We left the roof and I was disappointed; I missed standing right beneath the fireworks and being so small beneath the sparks reigning down, feeling the explosions in my chest and the pride and awe as patriotic songs rose and fell with the powerful display. It definitely wasn't the same without hearing Neil Diamond's "Coming to America" and Lee Greenwood's "Proud To Be An American." So many medical personnel have remarked to me that "there will always be next year" to make up for this dismal week and lack of celebrations. I hate this sentiment. Only people who are not ill and have never been truly ill treat years so casually. There is not always next year. There is no guarantee of even tomorrow. And the amount of things that can happen in a year's time is staggering. But I truly, truly pray that next year is better. The past year and a half have been chock full of trials for both me and my family. I am battle weary and have little left to give to the fight. I just want to go home, and I want things to be calm and peaceful for just a little while. "Faith is the assurance of things hoped for, the conviction of things not seen." - Hebrews 11:1. "The secret to happiness is freedom, and the secret to freedom is courage." Courage. Strength. Freedom. Faith. My goal today is to find and exhibit these traits again, for my own sake.