Today was my last day of chemotherapy, for the unforeseeable future at least. That's not to say I am "finished" with treatment, because I have many more infusions and treatments to go in order to ring that bell that most patients do at the end of radiation therapy. I'm honestly not interested in ringing the silly bell--maybe for the sake of a smile on the baby's face, but not for me.
I've been thinking a lot about these coming days, these days when I may be able to declare that I am cancer free, yet strangely not in remission. I was told early on, well the first day I met my oncology team, that "remission" was not a term that they used in my particular cancer. They didn't give me a clear explanation, but it kinda' broke my heart when they stated their opinions. Lately, my mind has wandered into the fact that I have just been through the most horrendous year of my life. Every few weeks, if not every week, I have been placed in a chair, and if I'm lucky, I can get a bed when I ask for it. The nurses have felt for three tiny bumps that lay below my skin on the left side of my upper chest, placed masks and sterile gloves on, so as to not contaminate the device they were about to stick a needle into. The device they accessed every week is called a port--an access point for infusing dangerous drugs and even drawing my lab work from. This port has been life saving, as my body decided to collapse it's beautiful healthy veins with each year that my undiagnosed health problems worsened. The port is an amazing device, but dangerous as well--hence the gowning process that takes place when the nurses access it. Attached to the port is a long catheter that is strung up over my collar bone and then weaved into the artery in my neck which leads straight into my heart--as a matter of fact, the end of the catheter is right at the entrance of my heart--you see why I call it a dangerous device as well?
After nine months of chemotherapy, the port was accessed today, and the blood flowed out of it perfectly. The infusion begins with a simple mixture of dexamethasone, a steroid that reduces the chance of my body rejecting the medication, and zofran, an anti nausea medication. Because this particular infusion is usually very harsh on the body, I am also asked to swallow a 72 hour acting anti nausea medication as well. Once the pharmacy has mixed and approved the chemo I will get, which took 1.5 hours today, they are able to bring the bags of poison to my chair. Because this is literally a poison, killing the good and bad cells in my body, the nurses are required to place a gown, mask, and gloves on in order to protect themselves from the bags. None of the fluid within the IV bags touches these nurses, but because it is such a deadly risk, the nurses are required to take all precautions to protect themselves.
For this, I find strength and joy. I have suffered the physical, mental, and spiritual side effects of being poisoned, cut open, pulled apart, and stitched back together over and over again. I have had chemotherapy running through my veins, and I know the awful demons that come with such toxicity. I can say with 100% certainty that anxiety, depression, and sometimes a level of psychosis follows as natural side effects of these drugs--is it frightening. After one of my first infusions, I woke in the middle of the night, uncertain of what was happening in my life. I paced my bedroom, in the dark, sobbed hysterically while holding my head as I did the basics of what we call "orienting" in nursing. I repeated, out load, "I am Crystal, I just had a baby. He is alive and beautiful. Today is Friday November 18th--I just had chemotherapy. On October 25th I was told that I HAVE CANCER. I'm so afraid.....Oh God, please help me, I don't want to die." I would then repeat that phrase as my mind went from complete chaos, confusion, uneasiness, and fear to a full and sound feeling of purpose and hope. Sometimes it took minutes, but most times it took hours to gain a sense of self again so that I could tend to my newborn baby and allow my body to fight. However, in the roughest months of physical and mental fight, my husband had to take over all the night routines with our baby....it was then that Gavin gained an endearing innate love for his Daddy while I laid idly by, heaving in sorrow because my body hurt too much to even walk over to the crib and feed him. The way these drugs cloud the mind is one of the most frightening things about chemotherapy--and by all means, I have known some grievous physical ailments attached to the process. It is my prayer that I never have to watch my loved ones endure such a trial--it feels like the longest marathon when I haven't trained a single day for the event.
I was numb today, and almost on the verge of anger. I'm tired, and when asked how I'm doing, that was my standard response, "I'm tired..." It was hard to smile today, but I'm grateful that I allowed myself to simply be who I am in the moment that I was in. My husband never told me I was being rude, he simply rubbed my back and his eyes would swell with tears when I was breaking. He is the person I needed with me on this last "Red Devil" infusion. I love him so much.
I stared at him many times as the medication dripped into me, robbing me of my physical energy while I sat by, as a spectator to my own demise, allowing the event to play out without intervention. I guess two negatives can make a positive, as it does in math; when my body is dying, we kill it even more so that perhaps, just maybe, I can live!!!
As I stared at my beautiful husband, I wondered out loud why it feels like our story is ending as it just begun. He smiled at me the little grin that speaks sorrow and understanding all at once. I've always wanted to end as we started, having raised our children up to live good and honest lives; I believed that one day we would sit and enjoy the fruit of our labors, being all the more wise and happy after all the "dang's, uh-oh's, and sorry's". I guess we never can see what our story looks like in the end, but I still have that same desire--to grow old and happy with the love of my life. The irony of this all is that the man Steve has become through this trial is the man I want to cleave to and never ever let go of even more--there is a beauty in him that surpasses understanding; yet, will I have all those years my heart desires? Or will they be had for another?
I'll be honest...i don't want to die, and I am hopeful that I have more time. However, there is always something in the back of my mind telling me to take today, live it expressing all the love I can towards my family, and don't expect the promise of tomorrow--just like you, I don't know if tomorrow will come. It sounds like an easy principle to adapt to, but it has been one of the most challenging lessons I have ever learned, made harder by the face of reality. Even I, who finds great joy in motherhood and family, have felt the pangs of what motherhood and family does to us. The monotonous day in and out, school and church responsibilities, temper tantrums, time outs, the piles of dirty laundry, dirty dishes, and dirty hands and feet seem to be endless--and yes, they weigh down a mother's spirit and drive. Combine that with willing sleep deprivation as a night shift nurse because I wanted so dearly to be my children's mother in the day--every day--and you have a recipe for disaster, a ticking time bomb. My reality before the cancer diagnosis was one of blind hope. My reality now says that I may be told that the cancer is back, and with that comes the question--"do we continue to treat?" While raising 5 of my children, current ages of 9 months to 14 years, I have the daily question of what will I do if the cancer comes back? Yes, it is still a question--if you saw my husband cleaning up the floor after I puked fecal matter all over it, or consistently reminding me that all these physical ailments will take time to heal from while I cried and cried this year away, you would understand that the question I pose is one of dire need. CANCER HURTS THE WHOLE FAMILY, but it is also a great teacher of deep love, sacrifice, and loyalty as well. My husband has watched my body morph into something far from the dainty and petite little thing I have always been. I have lost all of my hair, lashes, brows, have had hormone instability because of the hormone driven cancer I have which has caused added pounds, water weight, facial roundness, arthritis, and wobbling legs--I look like a sickly old lady, yet I am only 36 years old. I do believe with all of my heart that treating and fighting is always the first answer especially while raising children, but what will my heart tell me if nature continues to attack? I hope I will fight with even more understanding and grace, but I will leave that for tomorrow--if tomorrow comes.
For now, I leave you with the site that graced me this afternoon. Steve brought me a ginormous cheeseburger that I ate slowly as the chemotherapy dripped into me. He knows that the days following are usually filled with fatigue, a loss of appetite, tears, vomit, pain, and deep loneliness. He, as all my chemo companions strive to do, was fueling me for the fight ahead.
My dearest Steve, I pray that I have come into your life for the better. You have always told me how good I am, and I have always felt it genuinely from your heart. In the last 4 years, you have worried about me. There were times when we would be in the car, driving, and our conversation was halted because I had no recollection of past conversations that we apparently had. I clearly recall you saying, "I'm really worried about you babe...", and deep inside I was really worried as well. When I would tell you of the pressing need I had to get some scrapbooking done for these children, you would say, "I really hope that doesn't mean something..." Without even recognizing it, we were living and talking to eachother based on spiritual promptings--how beautiful is that? We have learned by the greatest and hardest teacher--experience. We have learned how to temper our words, for they speak lies when the mind is angered, but beautiful truths when we are at peace. Forgive me for being unkind in my words at times, I never meant to harm your beautiful spirit. We have, through our deep and abiding love, created 6 amazing children--they are the pearls in our nest, the treasures in our quiver. We, with broken hearts at such young and tender ages, laid our third born child to rest, as God taught us that He gives all things, and He takes all things; our role is to give back what He has entrusted to us, even if it means we will forever be changed and broken in ways we cannot put into words. I admire your desire to place first things first as you initiate family prayers and scripture study. It takes a heavy load off of me when you do these things; I believe it instills a feeling of protection that the world cannot offer. Thank you for not taking my deep grief offensively this past year. Thank you for sobbing with me when we first brought Gavin home. He laid between the two of us, swaddled tightly. I laid on my right side, in the fetal position, grabbing tightly to your arms as you laid on your left side, facing me, and reaching your arms under our tiny babe and towards me. We let everything out while Gavin slept perfectly still. Our bodies both quivered in anguish and confusion. Many "why's" were verbally asked and left unanswered. That night, our first night home from the hospital after Gavin's traumatic birth, we cried ourselves to sleep, together. We have always relied on each other for survival, and any period of time we have been apart has been the most trying and uneasy times in our lives. You truly do make me a better person, as cheesy as it may sound. Here's a good line, "You complete me!" It's silly, and attached to a chick flick, but true. I want to grow old with you, showing you how grateful I am for all the unconditional and deep love you have given me in just 9 months. My beautiful husband, if we have this gift, let us not look back and question the hard times, it is of no use. God has created the beauty hidden behind bodies that have been standing the test of time and sorrow; we are broken, physically and emotionally, but we are so alive and in love behind the bodies that have been tortured. Thank you for all the sacrifices you have made so that we have a fighting chance to continue to raising our children together, side by side. I'm finding that people have an attitude of invincibility when it comes to cancer....until someone you love even greater than yourself is afflicted with it. It is only when cancer comes in and threatens to take your loved ones that you cease to believe that everyone survives and lives 20 plus years post cancer--which still places me at a very young age of 56. Ideally, I will live a long life with you, but realistically we must prepare for whatever lies ahead. Whatever it may be, please know I am beside you and the children at all times, heping in the fight to bring us all safely home. I know you would say the same if you had to comfort me. I love you Boy, my Little Prince....your Princessa, forever
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