One Breath, One Prayer at a Time

    Life is filled with trials and tribulations. Sometimes it seems ... Often it seems it is more trial. Little did I know I knew nothing of pain. We won't get into my past right now. The past is just that. What I care about is the now, this very moment, as I watch a life hang by the barest thread. This post will not be polished and refined. It is more free flow to release pent-up ... things that are spiraling in my mind. Writing is my way to cope, to reason, and with God's help, find peace. 

    Life is as fragile as snow. Beautiful and fleeting. Seasonal. The things we find comfort in are sometimes the strangest of things ...The gentle hum of the ventilator is music that lets me know there is still breath. It's the alarm that makes my heart scream in protest. I've never heard such a loud alarm. I would say it can wake the dead ... but that is too morbid even for my sense of humor. The sounds of the IV machine have become as normal as a sneeze. They are there, but no longer alarm me. And that both comforts and scares me at the same time. I am growing used to sitting ... here.

    It's amazing how resilient one can be when faced with a storm... Resilient.... HA! I'm a mess, except for the times I feel at peace. The peace is a mystery. I know it can only come from God. There are times I feel completely at rest and full of hope. Other times, I am unable to exist beyond the pain and fear. My nerves are frayed as if they had been through the smallest cheese grater.

    So, you may be wondering, dear reader, how did I get ... here? Where is here? And whose bedside do I sit vigil at? 

    Here is the ICU. Who is my husband of 21 years. 21 years filled with laughter, and a few sprinkled arguments, and more importantly, wading through the general chaos life throws at people together.

    This ... darkness ... began on a Spring day when my husband was mowing the lawn. He came in to change from his sweaty lawn-mowing clothes, and this mass popped up out of nowhere. He thought it was a hernia. He made the appropriate doctor appointment. We fully expected to be referred for surgery and be in for a few days/weeks of recovery. Instead ...

  Instead, he was sent for a CT scan that we had to fight tooth and nail to get scheduled. Maybe it wasn't that long, but it seemed like an eternity. Then we had to wait for results and fight again to get them sent to the doctor's office. They would send them, but they wouldn't arrive... Pro tip, in case you don't know: check to see if there is a patient portal with your provider. That is where I would eventually find the results.

    While we waited on results, our doctor tried to get a biopsy scheduled to no avail. I don't understand why these things are so horribly hard to get scheduled, but here we are. Welcome to the greatest health care in the world? 

   When I finally realized I could create a patient portal account for Mark to get the results, I could barely comprehend what I was reading. Where was the information about the hernia, and why was this report talking about the diagnosis being lymphoma or leukemia? That's cancer! Cancer ... I must be reading it wrong. We sent the report by email to our doctor and made a follow up appointment. The doctor confirmed the report. I think I was still in denial. 

    Cancer. Either Lymphoma or Leukemia. We would need more testing to figure out which type. Our doctor referred us to an oncologist he trusts because his cancer was treated by the same oncologist. It is about a 2 hour drive, but we decided it would be worth it to get the best care. We made the right choice. Our oncologist is kind, dedicated, and compassionate - more on that in another blog post.

   We went to the appointment and I asked the question ... "What are the odds this is something - not cancer?" "It's lymphoma" was not the answer we wanted, but it is the answer we got. Lymphoma has several subtypes, and starting treatment without knowing the type can delay or inhibit treatment if you treat for the wrong one. We would need a biopsy to know how to proceed. It was a rollercoaster of health issues waiting on the biopsy - more on that in another blog post, trying not to write a book for my first post at least. 

 We got our biopsy thanks to the oncologist directly calling the surgeons he trusted. Even then, it was days before he could find one and another week before we could get in. With the urgency of a suspected aggressive lymphoma, time was of the essence.  A week after the biopsy, we were at the oncologist's office to review the results. Mark was so confused that day. He had been mildly confused leading up to this day, but the appointment day was alarming. He was hiccupping, coughing, switching from chills that gave him goosebumps to fever. I kept telling myself it would be okay, we would finally, after two months on this journey - Did I mention it's August? -  we would finally be able to start treatment! And who the heck is happy about starting cancer treatment? It's more relief than happiness, I guess. My son drove us up to the Oncologist's office. Mark was in no condition to drive - and me well, that's another story, but suffice it to say no one wants me driving when I'm nervous and anxious.

    By the time we got to the appointment, Mark could barely stand without weaving. One of the ladies in the office - I can't remember who - asked if he wanted a wheelchair. When my husband said yes, my heart about stopped. Here is a man who had refused help for anything, who was willing to admit he needed help. I brushed it aside. We were in a doctor's office. It's the cancer talking. We will get treatment and everything will be rainbows and sunshine again ... right?

     Only it wasn't. They led us to a procedure room and started my husband on fluids. We met with the Nurse Practitioner.  We found out he has Non-Hodgkins Marginal small cell B cell lymphoma and that his case is presenting in an unusual, highly aggressive way. She then started to talk about CHOP treatment ... we got to C. C is for chemo - when Mark suddenly took a turn for the worse. She started taking his pulse and asking confusion test questions. He didn't know what day it was or where we were. They checked his vitals and brought in an EKG. Heart rate of 200. Everything happened so quickly from there. He was Tachycardic and in AFIB. He was taken by ambulance to the ER across the street. My son and I stood in this surreal shock. It was like we were watching a medical drama unfold, and we were cast as the family members. I was out of body and in my body at the same time. Time stopped and moved fast all at once.

    We went over to the hospital. We walked instead of taking the truck. I was holding a box lunch I had picked up at the cancer center. I wound up giving part of the lunch to a man in the waiting room. Most of the box lunch has spilled over in a saucy mess... not sure what it was. It doesn't matter. Small things disappear in the folds of things as big as a medical emergency.

    We waited for an endless amount of time. I don't know how long. Maybe it wasn't really long, maybe it was hours. They let us back to where Mark was. He was refusing treatment and ... his eyes were yellow. He wanted to go home. I was told point blank he would die if he went home. I began to try to talk sense into him. Beg, Plead, Rationalize... I can't remember why we were sent from the room, but my son and I were. We went back to the waiting room. Someone in the waiting room asked if people were lying on beds in the hallway. At the time, I hadn't seen a hallway. I told her I hadn't seen anyone... After a while, they called us back again. There were lots of beds in the hallway. How had I missed that? The how doesn't matter. I was focused on a matter of life and ... I WON'T say the word.

    They had talked him into taking oxygen through his nose. My son and I spent an hour talking Mark into staying in the hospital. I was praying as I was talking to my husband. Two things came to mind to tell him. 

1. I didn't want our daughter finding him .... my son interjected, none of us wanted that. 

2. I got real close to his face, letting the tears flow freely, I told him, "Your eyes are yellow, and we can't fix that at home. You need to stay! Just one night." He agreed to stay but refused the bipap machine. I wanted to scream so badly, but at least he had agreed to stay in the hospital. He would later agree to the bipap and then later to be intubated. If you had told me last month he would agree to a ventilator, I would have told you how he felt about that. I guess being faced with the real choice "do this or ... die" can change almost any mind.

    I was expecting them to stabilize him, and we would go home, come back up the next day, and start treatment. The doctor's next words would shake my world like nothing ever has before. "We're admitting him." He paused, or maybe time slowed down; his next words were "to the ICU." My knees went weak, and I stared at the doctor. How I remained standing, I don't know. My son and I looked at each other in horror. What?! I never expected to be an immediate family member of someone in the ICU. But there I sit. In this suspended place between heaven and hell. 

    He has been in the ICU for a week. I spent the first night at the hospitality house. The next night, as I was getting ready to leave because visiting hours were over, the nurse came in and made it very clear how sick Mark was/is. She told me he was the sickest patient in the hospital. That visiting hours do not apply to me, and I could stay, and she wanted me to stay if I wanted to. They also lifted restrictions on the number of visitors from 2 to 4, and I was told he could die. I stayed. The nurses were at his side almost as often as I was. I only left his side when they needed to work on his care. But I stayed in the room watching. I think I slept 30 minutes that night. It's been a week, and he is still there/here. Still the sickest patient in the ICU. It's not a title anyone wants. Not a burden anyone can carry alone. God has provided many moments of peace, but I am a human being faced with something that is unimaginable until you are in the situation. I hope you never are in my shoes, dear reader.

    It is hard in times like these to find peace and have faith. But there are things that point to God's hand at work. For example, what if Mark's condition had deteriorated at home? We are 30 minutes from a hospital, and they don't work with our oncologist. Also, I don't trust the one close to home. I don't know why, but I just have a bad vibe about taking my husband there. The nurses where we are are amazing. My husband has pseudomonas aeruginosa, a type of pneumonia... more subtypes... if we had started chemo before finding the pneumonia... I don't want to finish that sentence. Needless to say, any illness when combined with cancer makes things ... complicated. But day by day, he edges towards getting better, and I pray and pray, not today, while trying to remember all things, no matter the outcome, are in God's hands.

    So, how do you find peace and have faith? Peace comes from God. As for faith, I find I can only take it one breath and one prayer at a time. Please pray for us as we battle so much that we cannot fight alone. I find at times I cannot pray a full prayer, but can choke out two words. El Shaddai- God Almighty. But God hears our hearts. So, if you, dear reader, cannot form the words to pray, simply letting your heart cry out to God is enough. He is here. He is with us. I haven't fully learned it, and I don't think I want to. Things are hard enough. But I am learning what it means to walk by faith and not by sight. All things, no matter the outcome, are not outside the control of our Heavenly Father. One breath, one prayer at a time, that is all I can do.