The Blood of the Chronically Living

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Deception

            “I did something stupid, something I’m ashamed to admit. And now I’m concerned it will somehow effect the treatment I’m getting today,” I stammered, unable to meet my infusion nurse’s compassionate gaze.

“You know, Cathy, anything you share with me is confidential.” Donna put down the sterile kit used to access the port I had surgically implanted in my chest and sat down to give me her full attention.

            “After my last IVIG treatment three weeks ago, I found out that my husband had been having an affair with a married co-worker for the last nine months.”

            “That’s just shocking. Fred always seemed so attentive, calling to check on you during your treatments.”

            “I guess he’s a pretty good actor…” I trailed-off, my eyes fixed on the wall.

            “Are you going to stay together?” Donna asked hopefully.

            “We’re trying, but it’s so difficult.”

            “I’m so sorry.” She knelt by the recliner to embrace me. I melted into her protective arms, as I sobbed

            “I’m sorry, Donna.” I weeped.

            “What in the world are you sorry for, Sweetheart? It wasn’t your fault.”

            “Unfortunately, there’s more to the story. When I found out the other woman was still in the picture last weekend, I swallowed a bottle of pills.”

            “Oh, Cathy, that’s horrible. You must have been in so much pain.” Always nonjudgmental, Donna knew exactly what to say.

            “I don’t think I really meant to kill myself. It just hurt so much to live that I didn’t know what else to do. I just wanted some relief.”
“I understand, Honey. But, thank God you’re still alive.” She embraced me again.

            “I’m so sorry, Donna. You work so hard to get me better, giving me these treatments, and I just try to throw it all away. It’s disrespectful to the care you’ve given me.”

            “You don’t need to apologize to anyone but yourself. You’re worth more than that.”

            “I was just reacting, instead of thinking. I won’t do it again….I promise,” I only half believed my own words. “I hope this won’t jeopardize today’s treatment. I had to drink coal in the Emergency Room on Friday to prevent the absorption of the pills.”

            “It shouldn’t interfere, but I’ll check with the pharmacist.”

            “You should also probably let him know that my dosage will be less today. I’ve lost 18 pounds since my last infusion.”

            “You mean in three weeks? That’s a lot to lose in such a brief time.”

            “I know. The doctor put me on an anti-depressant to help with that. It’s just been so devastating…” My voice faded.

            I flinched in response to the Huber needle abruptly entering my chest a few minutes later. The physical pain was a welcome distraction from my inner torment. Scenes from my two year courtship and subsequent year-and-a-half long marriage with Fred obsessively replayed in my mind’s eye.

           How could I have missed the seeds of deception? Was I too much in love? Too trusting? There had been clues long ago that Fred carried the potential for this level of pathological dishonesty. I should have listened to him in the beginning when he told me he was afraid of commitment, that he had no role models for healthy relationships. His parents had each been divorced five times and were both guilty of infidelity. Fred had witnessed it all as a child, yet I had foolishly thought that things would turn out differently for our relationship.

         I had loved Fred so deeply. He was a brilliant fiction writer with a captivating personality and boyish good looks. He had been my first love, and the only man with whom I had ever slept. I had vowed everything to him – my purity, my fidelity, my love and my life. And now I could see how worthless all of those things were in light of how carelessly Fred had juggled them along with his other clown duties.

       Then of course, there was the issue of my desirability. Fred had not bargained for a wife with a port surgically implanted that looked like an alien pod protruding from her chest. Nor did he know how to handle all of the doctor’s appointments, treatments, fatigue and various levels of disability that accompanied the rare auto-immune disease, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), with which I had been diagnosed the year before. He had married a 29-year-old woman who had the figure of a model and worked-out five days a week. How disappointing my body must have been to this coveter of the flesh I had married. How disappointing my life in this circus of deception and disability had become to me.

 

Delight

      “How do you feel?” The kind voice across from me asked, as I sat in that same infusion recliner the next year. I had just met Kevin the week before. Not wanting to waste time on someone who could not handle the realities of my life, I had told him everything on our first date. He responded to the news of Fred’s infidelity and my ugly divorce with understanding and a bit of humor.

      “I’ll have to remember to send Fred a fruit basket. I owe him big time. If he had not been such an idiot, I would have never met you.” I laughed with relief that Kevin was able to see my baggage as his good fortune. I was now cautiously optimistic that he would not immediately retreat once I shared with him the details of my health issues.

      “Will your illness ever affect your mind?” He asked, after quietly listening to my medical monologue.

      “No. It only affects the nerves of the peripheral nervous system.”

      “Then, you’ll always be you, and that’s all I care about.” I was stunned by my suitor’s perfect answer and even more stunned by his offer to accompany me to my next IVIG treatment. “That doesn’t sound like something you should do alone,” he had said, as I marveled at my luck that was now changing.

 

Destiny

      “Kevin and I are getting married!” I exclaimed just three months later to Lynn, my new infusion nurse who came to my home to administer my IVIG. It had finally been determined that I tolerated the treatments well enough to receive them outside of the hospital. Lynn and I sat together on the couch as I relayed the story of my suitor, both nurse and patient momentarily forgetting about the life-saving medication waiting to be infused into my blood.

      “What do I have to do to get to see you tomorrow?” Kevin had asked at the end of our first date and every date thereafter. We had not missed a single day of seeing one another. There always seemed to be a sense of urgency present in our relationship, a need to experience every moment together. “What do I have to do to get to see you tomorrow and every day after that for the rest of our lives?” He had asked on bended knee, as he proposed a mere three months later.

      “Just love me for me, as you have since the day we first met,” I replied, joyfully accepting his proposal.

      “Now tell me all about the wedding plans,” Lynn prompted as she accessed my port. I barely even felt the prick of pain, practically floating  above my chronically diseased body. The port in my chest that once made me feel like a grotesque alien was now merely becoming a tool to enable me to receive the necessary medication to take care of myself in anticipation of my happy future.

 

Determination

      “Did you bring the pictures?” Lynn asked as she got my medications prepared for my treatment two years later.

     “I can’t wait for you to see her beautiful face! I still can’t believe the adoption agency chose us to be her parents!”

      “She’s adorable, Cathy! And she looks so healthy to have been diagnosed with congenital heart disease. Were you given very detailed medical records about her condition?”

      “No, we were just told that she has a rare form of heart disease. We are preparing ourselves for the worst case scenario. If she needs open heart surgery, we will provide her with the very best care”

      “And you’re accustomed to navigating the healthcare system. I know little Chun’an will be in excellent hands.”

      Kevin and I had decided many months before that we were ready to add a child to our happy union and decided on adoption. Kevin had been adopted himself, so we viewed it as a great way to start a family. Having previously worked in Beijing, we also favored Chinese adoption. We looked forward to the adventure of traveling across the globe to find our daughter.

      As I investigated more about the Chinese orphans available for adoption, I found myself particularly drawn to the Waiting Child program. These children were typically a little older and had some sort of special need. Then when I saw little Chun’an’s photos, I knew I had found our daughter. But a heart disease diagnosis? Kevin had always been compassionate about my chronic health issues, but I had no clue how he would respond to the idea of adopting a sick child.

      “If you want her, we’ll get her,” he said simply, when I shared with him her profile. This, from the man who tenderly cared for me during an IVIG treatment just a week after we first met. Why was I surprised? My larger than life husband had been my hero for quite a while. And now he would have two sets of adoring eyes looking to him for light in the midst of an often murky world of injustices.

 

Devastation

      My IV pole and I slowly ventured into the kitchen to heat-up some lunch. It was nine months later and Kevin and I had just returned home from China two months earlier with our new daughter, Jade Chun’an. My infusion nurse, Emily, was catching up on some paperwork, while I prepared my soup. As I sat down at the kitchen table, Emily began making small talk, commenting on the latest HGTV had to offer on a Saturday. I sat hunched over my bowl of soup, hoping that she would not see from across the room the tears streaming down my face.

      The magnitude of my latest and worst crisis seemed to hit me in unpredictable waves, and I was already underwater at that particular moment. We had just been informed that Kevin was being diagnosed with stage IV Mantle Cell Lymphoma, the deadliest form of Non-Hodgkin’s Lymphoma, a cancer of the lymphatic system. With a median survival of just one to three years following diagnosis, I was devastated by the prospect of losing the love of my life. Kevin would soon have to endure the most aggressive regimen of chemo available, in hopes of achieving a remission. Then, the only real chance he had of surviving was a bone marrow transplant.

      How would he ever get through it all? How would we? For all intensive purposes, I knew I would become a single mother during all of this, as Kevin would be too sick to care for anyone else. The thought of me caring for a newly adopted two year old and a sick husband, on top of my own chronic illness overwhelmed my shell-shocked spirit.

      I looked around the beautiful home that Kevin and I had purchased when we were engaged two and a half years ago. I remembered how we would drive the half hour every night, as it was being built, just to visit “our house” and check on its progress. We giddily talked about our future together and imagined the memories we would make in that skeleton of a home. Never in a million years, could I have fathomed that Kevin would be facing a life-threatening illness. Even more unbelievable was the thought that Kevin was probably already in the beginning stages of cancer in that very moment years ago, as we had sat on the front steps, shoulder to shoulder, our late day shadow reflecting us as one entity.

      I tasted the salt of my tears, as they mixed with my already cold soup. Through my trance, I watched the slow drip of my IV medication, winding its way through the line, into my port, and into my heart, as my synchronized tears dripped the same rhythm.

 

Despair

      “I packed a kit to take with you,” Hope said, as she sat next to me in the Infusion Center lobby five months later. She had just finished giving me my last IVIG treatment before I departed North Carolina to travel to Omaha. Kevin was participating in a clinical trial at the University of Nebraska Medical Center. After the grim prognosis given during a consultation at Duke Medical Center, I had been determined to find a different answer. I just could not entertain the idea that my 35 year old husband could soon be gone from this world. And so I had set out on a mission to locate the leading researcher of Mantle Cell lymphoma. I had found her in Omaha and had called her office to beg for an appointment in her schedule that was already booked-up months in advance. When I cried and explained that my young husband didn’t have months to wait, we were graciously offered a consultation the following week. After Kevin and I had met Dr. Vose, we immediately decided that her clinical trial, which combined a new medication with an autologous stem cell transplant, may be Kevin’s only hope.

      There was no doubt that it was all going to be difficult. Jade was still adjusting to her new country, home, and parents. How would she react to being uprooted yet again to live in the strange medical center cooperative care environment? And how would I manage it all? The protocol at the Medical Center called for a loved one to train to become the patient’s care giver. Naturally, Kevin had chosen me to help him through this terrifying ordeal. And I would never have dreamed of allowing another soul to walk with him through it all. But, how could I possibly manage this feat, in addition to caring for Jade and for my own diseased body?

      “Please promise me that you’ll get one of the nurses at the Medical Center to flush your port in six weeks, so you don’t get any clots. It’s very important. I know that they’ll have all of the material they need there to do this, but I want you to take this kit with you, just in case. I just want you to have it. It’s very important that you somehow take care of yourself throughout all of this, Cathy.”

      I broke down in sobs, in response. It was the first time in quite a while that anyone had shown concern for my well-being, and I was touched beyond words. It had become so easy to lose myself in this feeling of being in crisis mode and fighting for my husband’s life.

      Terri, my other dear friend and nurse at the Infusion Center, heard my sobs and quickly came to sit by my side with Hope. These two kind ladies embraced me, surrounding me with their strength. I was terrified of losing Kevin, of having to return home a widow. And I was even more terrified that so much responsibility rested on my weak shoulders.

 

Devotion

      Three months later I slowly hobbled through those Infusion Center doors, as Hope and Terri greeted me with hugs. Kevin had made it through the clinical trial and transplant alive, with a prognosis of at least six years of survival and even the possibility of a cure. Jade had learned more about sickness, life, and compassion in a few months than most folks do in their entire lifetimes. And I had somehow survived the whole ordeal with my sanity, if not my health. I had quickly realized the day after we returned home that I had been running mostly on adrenaline, as I cared for my family in Nebraska.

      That morning my exhausted legs would barely allow me to stand, and I knew I was in the midst of a horrible CIDP relapse. Yet, I was undaunted. After all, my faithful legs had just carried me through Hell and back. I would deal with their forced convalescence too, as I had finally come to accept illness as a part of my life. I had realized that I was more than my diagnosis, my struggling body, and even the ugly port that protruded from my chest.  I could never be defined by those things any more than Jade could be defined by her heart disease or Kevin by his cancer.

      I now know that I am more than the deception, delight, destiny, determination, devastation, despair, and devotion with which I have lived. I am the sum of all of those experiences and many more, plus something that was created in me long before any man or illness ever entered my life – a spirit as essential to the Earth as air or water.