I've wanted to write a book for many years now. The idea may have been conceived in English class at Cheboygan Area High School where Mrs. Pletcher indulged my love of writing and my belief that I had a way with words. It was one of my favorite times in a school day, going into her classroom to read the quote on the board which was put there for us to respond to in our journals. If only I could find those journals from high school and take a look back at what 16-17 year old Sarah had to say about some things.
At that age time seemed to move so slowly and my thoughts and writings, anything I created, seemed to me to be larger than life. It was right about then, at what I perceived to be the peak of my confidence and creativity, that I was dealt a devastating blow. Cancer. I was diagnosed with osteogenic sarcoma, bone cancer, in the left femur and served one year of intensive chemotherapy at the University of Michigan's Mott Children's Hospital in Ann Arbor, Michigan. My heart is in my throat as I recall sitting with my parents in a sterile office, leg in a cast from toes to hip a short day after a biopsy surgery, being educated on all of the chemo drugs I would be given and all of the horrendous side effects that have ever been reported through the life and use of each. I wanted to transfer myself to the other side of the window I was seated beside and to perch outside on the ledge, sitting in the sunshine like one of the birds there. Then, if I could fly away like them too...instead I sat there and cried. This was July 1991, a month before the start of my Senior year of high school; a year that would largely be spent in the hospital. In that moment I could not imagine how I would survive.
But I did survive. I not only survived, but I thrived, as they say. My initial instinct had been to recoil, to turn inward, circle the wagons and hunker down until the danger passed. Instead I made friends. I reached out, nominated my mother and myself as the welcome committee orienting new patient's to the oncology unit. I used humor and laughter, got to know the nurses, made light of the admission paperwork, was real with my doctor, learned to do "the bridge" while shuffling cards. I lived in community. Thank you Channon Boullion and Tami Lickert Harrison for being my dear friends and family, in sickness and in health, for being active parts of that community. What if I had recoiled? What if I had allowed cancer to shut me down? I would have missed the beauty that lies beyond cancer, beyond 1991, beyond the age of 17. At that time it was like groping desperately, trying to grab something just out of reach as I tried to hold onto my Senior year or the age of 17 and 18. Then to grieve their loss from a hospital room. But there was beauty beyond the safety and comfort of my home in Northern Michigan that year found in the friends and community in Ann Arbor hospitals.
It was an amazing, painstaking journey and a life-changing one. While creativity and writing had taken a bit of a back seat to dealing with side effects of treatment, trying to maintain school work while in the hospital and squeezing in as much of a social life a compromised immune system would allow, my heart and soul turned to music for an outlet. One of my favorite bands in the 80's was a Christian rock band named Whiteheart. Their song "Desert Rose" became my theme song.
"If it's a lonely day, know you're on the Father's way. He will hear you when you cry. He will hold you...your Father will hold you. He will love you...He will shelter you. Desert Rose don't you worry, don't be lonely. Heaven knows in a dry and weary land a flower grows. His desert rose."
I had a CD player in my room at all times. This was before the age of iPods. It was during this time that I also received cards and letters through the United States postal services or "mail", the hard copy that gets delivered by a mailman requiring paper, envelopes and stamps. This was before the day of email, or at least for me. I didn't have email until I went away to college.
Those days of life bald and hospitalized, sick and unsure; the era of handwritten notes and face to face encounters seems a life-time ago. As I recall it now, it seems like a different world altogether.
Time went by and then I turned 40. Many years later and with a lot of amazing and interesting things to happen in the mean time, but I'll get to all of that later, I turned 40. I remember when my mom was 40. Actually, I can remember when my mom wasn't yet 30! And here I was, turning 40, holding a 3 month old child in my arms. This babe, nothing short of a miracle, was not supposed to be. One of the side effects of each and every chemo drug I had taken (and had received a lifetime dose of each within that year) reported the side effect of infertility. My son whom I held, my sons surrounding me, all four, each a God-given gift. It amazed me and completely baffled me. Where had time gone?
And then I turned 41. I turned 41 and I had not yet gotten over the fact that I had turned 40. It was a difficult transition for me for some reason. We all see ourselves through misty, foggy or distorted lenses. We judge ourselves based on criteria and expectations spoken over us when we were young or ideals we ourselves determined somewhere along the way. We take joking words or mindless observations spoken and make them important facts about us that must be reckoned with. For me, that was what it meant to turn 41. All of the "over the hill" jokes and "growing old gracefully" commercials were facts I was facing and I didn't feel gracious about it at all. In fact, I struggled.
Marriage and children had continued teaching the lessons of grace and love that I had known about through parents example and in theory during my earlier years. I tried to be a good student. I began to write again in order to gain perspective on my changing life and to share any insight or lessons learned with friends and family. Soon events would come about that would continue to shape the way I felt about and experience growth and change. It was January of 2014 and my mom, Mimi to my children, was diagnosed with breast cancer. It was a shock and something that took me a long time to get a handle on. (Not to say I "handle it" at all times, but have learned to be calm in the midst of the storm.) My parents displayed such a deep sense of peace and rest in the midst of this news. They prayed and waited and weighed all options before deciding on an all-natural approach to treating her cancer. This was not easy for me to accept. After all, when I was diagnosed with cancer it was a matter of 2 days before a port had been placed and chemo had started. I wondered where then was their sense of urgency. There is much more to the process and I've chronicled many of my thoughts and feelings in previous posts. But the long and short of it is, I watched as my mother very consistently and determinedly managed her diet, exercise, supplement regimen and other forms of natural health care. I learned from her discipline and care of herself. I watched my father support her and love her deeply through researching her diagnosis and treatment options, and by staying close to her side through it all. (As I yelled from the sidelines, "Start chemo! Get a mastectomy! What are you waiting for?!" I've since apologized for my frantics.)
It was probably around Christmastime 2014 when I came into the grace of growing. I believe there is grace for us every step of the way in our lives. When I say "I came into the grace of growing" it is because this was a significant moment of change in my journey when I accepted "grace" for myself, grace as Webster's defines it as "ease and suppleness of movement or bearing". At that time I looked at my four beautiful boys playing together in our cozy living room. These healthy, happy, energetic children that were given as gifts to my husband Pete and I. Any lost sleep, stretch marks, c-section pain or scars paled in the light of such a sight. Peaceful perspective. I began to recount all of the blessings in my life: healthy and loving family, faithful friends, employment, Church community and the list went on. This was not the first moment of profound gratitude in my life, I've experienced that time and again, however this moment held a specific message for me regarding growing and aging. My book was not yet written. This beautiful story of love and grace, of peace in the midst of storms, of blessings and babies, had many chapters yet to fill and in that moment I experienced clarity and contentment at the realization of my place in life and time.
And it was around Christmastime that I had pain in my right breast. I imagined I had caught an elbow from one of those beautiful boys I reveled over at a Christmas gathering. The pain went away the next day but a persistent husband asked me to follow up with the OB/GYN. Much of the following events have already been recounted in this blog as well. My first mammogram, breast ultrasound, meeting with a surgeon, biopsy and resulting cancer diagnosis. I was admittedly a little bitter. Hadn't I just turned a corner emotionally even perhaps matured a little in this journey of life? How could another cancer diagnosis in this life be possible?
Last week I received my first chemo treatment at The Block Center in Skokie, IL. Following in the example my parents had set, Pete and I took time to gather information regarding my diagnosis and treatment options. It was an important process as we sought peace in the midst of decision-making and in the selection of our health care/treatment team. We found that peace at The Block Center where they take an Integrative Approach to cancer care. My nutrition, physical activity and emotional state of mind are all considered as well as the cancer diagnosis and conventional chemotherapy treatment. It was during this first treatment for my second primary cancer diagnosis that I learned that I have a mutated cancer-suppressor gene, a syndrome called Li-Fraumeni Syndrome. I am just beginning to learn about this syndrome and what it means for me and my family. At this time I understand that my risk for breast cancer with this syndrome was 3x the average risk. It puts a lot in perspective regarding the sarcoma I had in my teens and now the diagnosis at age 41. Throughout the learning process I will be sharing my thoughts and experiences here. As I have said before, my book is not yet written. There are many more pages to fill. For now, I am present this moment and have come to realize I am unable to handle anything more than that. I have found even praying for my "daily bread" to be a little overwhelming these days. My prayers have been moment by moment.
But I know there is beauty in each moment, each day. I know there is beauty beyond, around and within a cancer diagnosis and a mutated gene. It is for me to see that beauty, to know it, experience it and write about it. I haven't lost sight of the lessons I've learned and know that all the chapters I've lived to this day have served to inform and equip me. I will continue to grow gracefully and to share the beauty of this life.
In my "I Am Doing Something" post last month I talked about my efforts to change my environment; to make my body inhospitable to cancer but also to clear my mind of negativity and fear. I've taken the latter a step further. I realize it's one thing to target my thoughts and yet another to tame the tongue, to become aware of and purposeful with my words. Since starting chemotherapy last week and having lived the last few days in a painful fog from which I'm just now starting to resurface, this is proving to be more of a challenge for me. I want so badly to add a "I hate cancer" hashtag here or a "chemo sucks" there. I've refrained because here is what I believe: I believe our words have life-giving power. They have the power to bless or the power to curse. Proverbs 18:21 says, "The tongue has the power of life and death..."
As I've worked on this in the last few weeks I am in disbelief at some of the things I mutter under my breath. The words I say are reactionary words or statements but I utter them nonetheless. Upon further reflection I'm glad they are words or phrases that go mostly unheard by others, but I realize that if I speak them into being whether they are heard directly or not, they still hold the same power. (Even if I'm the only one that hears...)
I would not want someone speaking words of negativity, pain, unrest or worry over me as I am in the healing process so why oh why would I speak those words over myself in a time of suffering? Especially in a time of suffering? It is in the midst of that suffering and pain where I am in need of the most life-giving, positive, peaceful encouraging language. In seeking this language to soothe and to heal I am not diminishing my emotions or my suffering. I can freely admit that my head, face, mouth and esophagus have been plagued with sores these last days, that I have been beyond exhausted to the point of being unable to maintain consciousness for a full three hours straight. It is not negativity that speaks when I recount that I have had stomach cramps and have had to fight for the energy to even talk to my kids, let alone play with them. And now, I am thankful to say that I am coming out of that cloud. I have more energy and have been able to stay awake all day today. I'm able to stand for several minutes at a time and have been able to eat a full meal.
In those difficult moments of the last few days I told my husband that I felt "defective" and apologized for being unable to do much of anything. I learned that I am able to remain authentic and "real" about my situation while maintaining life-giving language. Because even in those dark moments, life-giving words came to my heart and mind. Pete would read to me from, "Prayers from the Heart" to provide more words of encouragement, hope and peace when I had no words. One of the prayers he read is a very simple one from Lady Julian of Norwich. She shared that God, in His tender love, comforts all those trapped in pain and sin by speaking these words to them:
"But all shall be well, and all shall be well, and all manner of things shall be well."
All shall be well. I want to absorb these words, to feel them at the core of my soul. All shall be well. And because I want to integrate these words into my being I choose to use the language of life and blessing, of hope and truth. And I pray with King David of old, "May the words of my mouth and meditations of my heart be pleasing in your sight, Lord, my Rock and my Redeemer." (Psalm 19:14).
As I was sitting in the waiting room on Tuesday morning (3/24/15) contemplating the port placement procedure I was about to undergo, an overwhelming sense of grief began to overtake me. The realization of what this surgery means, what was about to begin for me, a trajectory set to a pace that I could not slow down...It was time to go and I wasn't ready.
"I feel like I'm saying goodbye to my body as I've known it," I told Pete. "Just when I was starting to feel stronger and more at peace with the next phase of my body's life; beginning to truly appreciate the marks from childbirth and happy to move past those years to the next."
We chose to sit in silence, Pete with a quiet but steady hand on my knee.
A metaphor, a visualization came to my mind. "My body is like a tree marked by the events of time," I thought and wrote it down before they came to take me into the operating room.
As I reflected upon this thought the next day with Pete sitting next to me and the chemotherapy drugs beginning their work inside of me, I shared my thoughts with him about the changes and especially the marks that my body will bear in the coming months. I reiterated that I thought my body was like a tree marked by the events of time. When I said it he knew instinctively that I was referring to the storms, fires, marks of car accidents, chopping, loss of limbs that leave stumps on the side of a tree. Marks of a lifetime.
Without hesitation he added: "Still standing. Providing comfort, shade and beauty to the world, soaking up the light of the sun."
I sat silent at his words. One can't really improve on that statement. What a generous and wise thing for a husband to say to a wife who is concerned about what chemicals, time, treatment and surgeries will do to her body. How encouraging, loving and reassuring. He has said before, "But I get you." Nothing else matters, no marks or weaknesses or changes. He gets to be with me and that's his final word on the subject.
Considering my body as a tree, with all it's dents, marks, glory and splendor, reminded me of one of the Scriptures used at the Spiritual retreat Pete and I had just attended.
Jeremiah 17: 7-8 "But blessed is the one who trusts in the Lord, whose confidence is in Him. They will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to produce fruit."
Looking at this Scripture once again in the light of the conversations with my husband and the thoughts of the previous days, I was once again encouraged. Even in the heat, fire, drought, those events of time, a tree planted deep has no fear, no worries and will continue to bear fruit. So I also realized that even in the midst of my time of trouble, when I'm at my weakest, I remain one who is firmly planted in Faith, Hope, and Trust in the Lord, one who continues to live a fruitful life and that is beautiful.
7 am: Rise and Shine! (Couldn't sleep more than 3 hours total last night due to gas pain, so I was already up when it was time to be up.)
Up and Dressed, out the door before 8:30.
Hearty breakfast of eggs, turkey sausage and whole grain toast.
Pre-medicated with Decadron.
To The Block Center around 9ish.
10 minutes on the treadmill for some detoxifying cardio! (At least 10 minutes of cardio prior to treatment reduces the toxicity of that treatment by around 80%!)
Have my Scripture ready: Hebrews 4:16, "Let us approach God's throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need." (Thanks for that one, Amy!)
Vital signs taken. Lookin' good!
Have my mantra ready: "God in, cancer out!" (Thanks for that one, Jennifer!)
Pre-medication drugs (the "rescue drugs") started after 10 am.
Took pics and sent photo updates, including silly pole dancing photo :)
Drank water.
Headed for the loo.
Prayed over chemo bag before the meds entered my body. Directed it to join my army already deployed to fight the cancer. Used visualization here for a targeted attack on the cancer.
Actual chemotherapy started after 11am. SLIGHT reaction to said chemo. More steroids given to keep airway open and chemotherapy resumed successfully. This drug is given with cryotherapy (cold packs on hands and feet) to help prevent side effect of neuropathy.
Received Benadryl. Got sleepy.
Drank water.
Tried to stay awake during support group/lunch and was successful even after a 5 minute silent meditation!
Drank water.
Took a trip to el bano.
Wrote out 2 birthday cards and one encouragement card.
Played scrabble on iPhone with my fantastic hubby!
Drank water.
Updated my blog (as you see here).
Drank water.
Tended to matters in the lavatory.
More photo updates taken for family. (None from inside the bathroom!)
Played cards with my love.
Nibbled on a snack.
Drank water.
Stomach started to hurt.
Drank more water.
Visited the water closet.
More updates to blog before returning to said water closet.
Day of pre-medication, Taxotere, Herceptin, Perjeta, Carboplatin, steroids, etc. complete around 5:30pm.
Left The Block Center feeling hungry and relieved. We prayed a prayer of gratitude for all of our friends, family, and healthcare team who serve us, strengthen us and are on this journey of healing along with us!
Dinner with my love at the Original Pancake House. Ate slowly, one buckwheat pancake, 1/2 an egg, water.
Stomach still hurt but by bedtime which was 730 ish. Pete rubbed my back for a while and it helped relieve stomach pain. Then rubbed my feet for relaxation. Such a wonderful caregiver, this man!
I was asleep before 930 pm but awakened before 1230 am by some girls yelling in the hallway. Took over an hour to get back to sleep only to be awakened by them again around 330 am and here I am, shopping on-line for scarves for cancer patients and typing away at 530 am, unable to get back to sleep. I'm feeling pretty good. No stomach pain-I praise God for this relief! The soreness in my chest from the port placement is going away. I look forward to actually showering this afternoon and that may help me feel even better!
As far as side effects. I'm feeling very weak. I can tell my taste is changing already as the rice cake with peanut butter I started eating at 1230 am tasted different at 430 am. I have a slight pinkish tint to my face and neck. I'm wondering if that's just coincidental or perhaps some kind of rash. I remember getting this when I took Adriamyacin many years ago. It's not irritated, it's just pink.
I'm also noticing a strange sensation in my fingers and toes. I know neuropathy can be a side effect of Taxotere. From what I understand this side effect CAN BE long term but isn't always so and The Block Center provides cryotherapy with the Taxotere, as I noted before, in hopes of preventing this side effect or reducing it's overall effect. I, however, have decided I don't want neuropathy at all! So, I pass on that. And otherwise, I am doing just dandy! In a few hours we shall be heading back to The Block Center where I will receive IV Vitamin C for a boost and my neulasta shot to give my white blood cell count a boost. Then home!
Day One, done!
Faith and doubt are not polar opposites. Faith and certainty may be more so. It wasn't certainty that propelled Peter out of the boat onto the stormy sea, it was faith in the Savior standing on the waves.
Faith and doubt go hand in hand to motivate us to dig deeper, seek answers, take another step, go further, work harder and to trust with reckless abandon.
I'm glad that I understand this about faith and doubt because as I stand with my feet planted on the deck of the boat and the stormy sea rages about me I am quite uncertain. What was excitement last week at finalizing a treatment plan and preparing to get things started, this week has turned into anxious energy. My stomach is sending me a twisted message and I'm feeling seasick.
Deep breath in, exhale slowly. Yes, I've been practicing my deep breathing and my visualization, imagining chemotherapy as an army sent to war on my behalf to wipe out the enemy. I've been visualizing the healthy cells in my body being protected from the battle and growing in strength. I've visualized the room where I'll receive my treatments and have seen God Himself there with open arms to hold me in these hours.
The sky is dark and the waves are high. My little boat is being rocked. But my heart and mind are calm. I wonder if this is what it was like for Peter as he stood on deck, his hair and face wet from the crashing waves, muscles tense from gripping the side of the ship, anxiety stirring in the pit of his stomach. But there, in the midst of the storm, on the darkest, angriest rolling wave a figure appears. I can imagine Peter wiping his eyes with his arm to try to see more clearly as he squints into the distance. Could it possibly be? How could it be? Jesus on the waves? Jesus on the waves.
"Jesus if that's you, tell me to come to you," Peter shouts over the howling wind.
"Come," was the response.
One leg over the side of the boat and then another and Peter is walking. On water. He walked. Then he sank because he took his eyes off Jesus, "saw the wind" and was scared again. But the point is he had faith to step out of the boat despite his doubt.
I'm seeing the wind right now. I keep thinking about the last time I had chemotherapy and how utterly sick I was. There were very few medications that kept me from being physically ill with each treatment. I don't want to go there again and feel I cannot.
But I will if I must. I will get up tomorrow and go into surgery. I will have chemotherapy on Wednesday. Regardless of how it makes me feel I will dig deep and summon the fortitude to go back and do it again in three weeks. If I believe Jesus is on the waves with me, faith will propel me forward even in my doubt. Though my thoughts and feelings are conflicted I will put faith and doubt to work for me, to motivate and move me. I will trust with reckless abandon and will keep my eyes fixed.
Results of my PET scan were favorable. There was no sign of cancer anywhere else in my body besides the tumors in my right breast and one lymph node. Everything reported were things we already knew about. That was and is so encouraging!
I know there were some friends and family praying that there would be no cancer evident at all; a complete healing. While I think that would have been excellent I have come to learn through my years and experience with a previous cancer, diagnosis of diabetes and whatever else I've had to deal with along the way, that "healing" doesn't always meet our expectations.
I've had many years to contemplate my thoughts and beliefs on this subject. When I was 17 years old and diagnosed with cancer for the first time, osteogenic sarcoma in the left femur, after getting through the utter shock of it, I did pray believing God could heal me in a heartbeat. Weeks passed, months passed and I still believed He could heal me, heal me by taking away the cancer altogether and keep me from having to complete my 49 rounds of chemotherapy treatment. I knew He could mend my leg so that I wouldn't have to have limb salvage surgery and live with chronic pain and titanium rods in my leg. He, the Creator of my leg, could easily have taken a breath and crafted a new bone for me. But that didn't happen. And I completed my 49 rounds of chemo, had the limb salvage surgery and deal with pain when I overdo it, the weather is off or just because. But healing did come. Not the wow-factor kind, or the science-can't-explain-it kind but the slow-borne healing of medicine, treatment and time. I lived 22 years and 7 months free of cancer! I remain a survivor of bone cancer and will celebrate that 23rd anniversary on June 2nd (as well as my 9th wedding anniversary!).
I do believe in a miracle-performing, ever-present, all-concerning and consuming God who knows me intimately and infinitely; who loves me more than I can fathom. I believe He wants good for me. His primary concern is that I would know Him and would respond to His love. Often times we want, hope or expect that God is concerned about our comfort and happiness. And while I know and do believe that He loves to give good gifts to His children, those gifts don't necessarily correlate with our ideas of comfort and happiness.
A. W. Tozer said: “When I understand that everything happening to me is to make me more Christlike, it resolves a great deal of anxiety.” And honestly, I'm beginning to feel that way too. The amount of peace and clarity that has come already in this cancer diagnosis/treatment process has been incredible. I'm not comfortable but I'm peaceful.
As I consider this topic of healing in other areas of my life, not just cancer, I immediately think of anxiety. Starting in 2005 I was plagued by crippling panic attacks. I was unable to drive 3 miles without having to pull over and practice my deep breathing and try to talk myself "off the ledge" so to speak. I was having panic attacks daily at work and could not go to the grocery store by myself for fear of getting stuck there, unable to move. The panic attacks subsided a bit amidst the joy and excitement of meeting Pete, falling in love with him and ultimately marrying him. In the midst of all of that anxiety I met Pete, got engaged and planned a wedding all in 9 months! Obviously, there was some amount of peace and clarity experienced in the midst of that storm. Shortly after we were married, however, the panic attacks picked back up in intensity. One day I found myself sitting on the floor in the middle of Target with a cart full of groceries and I was frantically trying to call anyone I could think of who could talk to me and help calm me down. I used the cart to carry me out of the store, staring at the floor with every step, left the cart at the door and made it to my car praying, "God help me, God help me," all the way. It was one of the worst moments of my life. If you've never experienced anxiety or particularly panic it may be hard for you to understand what I'm saying here. But, in those moments you literally think you are going to die, loose control, be lost in some way, have a heart attack, pass out, or any number of things you might imagine that would cause fear or terror.
I'm a Licensed Clinical Social Worker with an emphasis on the "clinical". I have a private practice where I teach people coping skills and ways to deal with their anxiety and panic. I knew what I was experiencing but couldn't see my way around it. I knew I needed medicinal intervention and so for just over a year I went on anti-anxiety medication. I took my medication faithfully, practiced my relaxation techniques, worked on renewing my mind and recounting Scripture, cut down on the heavy metal music intake, and became acutely aware of my triggers so I could fend off a panic attack before it started. I had to change jobs as I became aware that the position I was in (working as a therapist at a cancer support center) triggered my anxiety. That move was very hard for me as the position I held there was my "dream job". After making the change however I noticed the panic was decreased.
This was a long process that is easy to sum up here but was not so easy to implement. It was a lot of hard work but it paid off. It has now been years since I've had a panic attack and years since I've needed the aid of anti-anxiety medication. I am comfortable and confident in saying that I was healed from panic attacks.
After leaving the cancer support center due to my anxiety/panic I went to work for hospice. I know, it may sound strange that that should have been a positive switch for me, but it was. There was something about the certainty that I was there to help make a person's transition from this life to the next a little more comfortable and to support the family throughout the process as well, held a strange sort of stability for me. I didn't have to guess if someone was going to die, I knew eventually all my patients would and I knew my role in the midst of it. I found peace in that.
One of the things that hospice staff talk to families and patients about is this idea of healing. Healing doesn't always meet our expectations. It is true that healing comes in many forms and at different times. In death we find healing of a deeper and spiritual kind. We talk about this in our culture and may even be unaware that we are doing so. When someone dies we say things like, "He's in a better place," or "She's not suffering anymore". This speaks of the healing of the soul, no longer in turmoil, at peace. My hospice experience and these many conversations have helped to shape my thoughts and beliefs regarding healing and I am thankful for it.
Last month I wrote a blog post entitled "Choose Peace" where I recounted my emotional struggle with my mother's cancer diagnosis over a year ago. In that blog I stated, "just because there is drama in my life doesn't mean I need to respond dramatically." When I consider that statement now I shake my head and laugh a delighted laugh. For one historically prone to anxiety and panic it is amazing to think that in the face of my mother's diagnosis I came away with peace of a deeper kind than I'd ever known. If you read or re-read the post you'll see much of that was due to my mother's example.
I received such good news yesterday. No cancer anywhere else in my body except what we were already aware of. I'm so grateful. "No cancer anywhere" would have been amazing to hear too! I have a hope and a trust that my cancer-healing will come and in the meantime I am being healed in other ways and in other areas of my life day by day.
There are days in my life that I would be happy to repeat. My wedding day for one! It was like living the excitement of a thousand childhood Christmas eves! Spending our first night together as husband and wife. The day I found out I was pregnant with our first child. The day I found out I was pregnant with our second AND third! And of course, the day I found out I was pregnant with our fourth and final child. Meeting said babes for the first time. Those were great days, stellar moments in my life.
Conversely, there are days I have lived through that I would never care to repeat and even some that I may want to forget. Days that were marked by traumatic circumstances or the consequences of poor decisions. In life, however, we don't get the option to repeat or to forget. But through it all I've learned some things. I realized if I get stuck in the memories of days gone by, the ones I'd ask to repeat, I risk missing out on the beauty of today and the memories that are being made here and now.
In the same respect, when I'm in the midst of a day I'd like to forget and am wishing time away, there is that same risk of missing out on the secret beauty that lies within. Not only that, but I may fail to see the beauty that lies within or beyond my struggle or trial. I have seen it time and again in my life; seen good things come from difficult situations.
Isaiah 61:3 says we will be given "...a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair."
I was talking with a patient during a visit the other day. She asked me after some conversation how long I've been cancer-free. I briefly explained that it has almost been 23 years but that I was recently diagnosed with breast cancer. She couldn't believe it. I told her that I see it all as a learning experience, adding, "There must be something I missed the first time so I hope to learn that lesson this time around!" And while we laughed about it at the time I realize there is much truth to that. While I never wanted to have to repeat those days of cancer, chemo and illness there was much beauty and many positive things that came from that time, rich life lessons learned.
Today was my "big day" at The Block Center in Skokie. This is an integrative cancer care center. I met with a dietician for meal/supplement planning, a social worker for stress management and support planning, a medical technician for strength testing and vitals, an oncologist to develop a treatment plan and a phlebotomist who took much of my blood for testing. It was a very busy, very productive day and here is "the plan". Next week will be the week of tests: a PET scan to see if the cancer has spread anywhere else in my body and a MUGA scan to test my heart function. I will be having a port placed on March 24th early in the morning. This is an outpatient surgery. The port is inserted under the skin and a tube is looped into an artery for distribution of chemotherapy. This is preferable to using veins for chemo delivery. After the port placement I will be going to the Block Center for blood work to see if I am cleared for chemotherapy and will be meeting with Dr. Block. If all goes well I will receive a high dose of Vitamin C in preparation for chemo and will start chemotherapy the very next day. The day after the chemo treatment I will go back to The Block Center for a neulasta (white blood cell booster) shot and another dose of Vitamin C.
This will happen every three weeks for 6 cycles. While it sounds arduous, I was very happy with every person I met at The Center today and am happy to have them for my healthcare team. The Center itself is very small, clean and inviting. They offer yoga classes, cooking classes, and massage therapy all while you are there for your treatments. The program and the Center itself is set up in such a way that I actually felt like I wanted to spend time there. If one must have chemotherapy it seems a very positive thing to have a space to go to that is so welcoming.
So, while I am encouraged by these things I am also nervous. I hope I'm up to the task. I have excellent friend/family support, a healthcare team I like and have confidence in and believe in a God who not only heals but also redeems even the darkest of situations/times.
In his book, The Making of an Ordinary Saint, Nathan Foster says, "Weakness creates space for God. The healthy don't need a doctor." And so in this trying time I plan to see God in the space created by my weakness. I plan to receive joy to replace my mourning. I am determined to find the beauty in each day, living moment by moment so that I don't miss a thing. There is beauty within and beauty beyond these difficult times and I plan to experience it all.
I tell Pete quite often that he is a hard worker, and he is. I want him to know, through my words, that I recognize this and appreciate this about him. He is a very driven and focused individual and the proof of his efforts are in his work. It's something I not only appreciate about him but really admire about him.
I've been sick for over 4 days. Until yesterday, Saturday night, I hadn't moved much from my bed since Tuesday morning. Once I was able to move again, I really moved. After wiping off the dining room table and sweeping the kitchen floor I thought to myself, "You're a hard worker." I do believe this is the first time in perhaps FOREVER that I've allowed myself that compliment.
While I accepted this compliment at the moment my inner self spoke it, I have been reflecting on it since. It has caused me to realize, or perhaps I knew it already but am now ready to fully admit that I am not good at caring for myself. I am indeed a hard worker, but what I'm now fully aware of is I don't know when to shut it off. I may have admitted the lack of self-care before, however, I am now prepared to take steps toward change.
I love the meme's on Facebook that say things like "Men, if you want to know how women think, imagine 1,254 browser pages open all at once ALL THE TIME". Or the one that has the "I'm Going to Bed" list for men and women. Men: go to bed. Women: wipe down the kitchen, tuck the kids in again, feed the dog, check the thermostat, check the door locks, throw in a load of laundry, clean the bathroom sink, clean the nightstand, go to bed. (Something like that anyway). After reading some of these things I confess: that is me. And, it is supremely difficult for me to "shut-off".
It's easy to be critical of the work-a-holic who is away from home more often than not. But how about the work-a-holic who's home but constantly doing something? This I would justify by saying, "It needs to get done." Or, "I want to do it so Pete doesn't have to after a long day at work." Or, on my weaker days, "If I don't do it, who will."
It just so happens a Seed of Self-Care was planted as I sat in session with one of my clients several weeks ago. I was leading him in a relaxation exercise and closed with a meditation. He deals with chronic pain so I wanted to share a positive thought on the body. From Julia Cameron's book "Blessings" I read the following:
My body is more than just a vehicle that carries me through life. My body is a storehouse for my memories, a sensitive radar kit which warns me of danger, a wise teacher who signals me how best to care for my spirit. When I take seriously the guidance it offers, I make decisions which honor me in a holistic way.
Practicing self-care is something my husband and my mother especially try to stress with me. My friend Cindy also gives me kind lectures on the importance of this practice. I was listening but not hearing what they were saying. After receiving the news I did last month, another cancer diagnosis, and being sick for what seems like the 5th time since winter began, I realized it was (finally) time to listen; to take it seriously. The quote above returned to my mind.
At the end of one short day of being able to keep food in me after days without, I was running my body like a machine, a vehicle, and I was not being kind. In my mind I was full speed ahead, getting it done. As I considered this later I reminded myself that there will ALWAYS be something that needs to get done. It's in those "full throttle" moments that I must recognize it's more important to sit down with my sons and read a book instead of straightening the bookshelf.
Over the recent months I have been making efforts to delegate more of the house work. Practicing what I preach to my clients when we talk about family plans that include children's chores. Our boys, while young are very helpful and very eager to be given tasks when there is work to be done. I know it's important to involve them now so that we will continue to work together as a family over the years. This is an act of teaching, togetherness and caring for myself.
My body is more than a vehicle, it's a storehouse of memories, a library of wisdom, a partner through the most rewarding and tragic events of our time.
The meditation goes on to say:
I bless my body for its patient endurance, its mercurial intuition and its persistence in speaking to me even when I slough aside the guidance it bears. My body is the most loyal of friends. I bless my body for its loyal companionship and commit to regarding it with tender care.
I do so commit. I talk to my clients about being kind to themselves through the way they talk to themselves (and the power of words is something you'll be hearing more about). But, I think a very important piece is also the way we treat our physical self. While it's been easy for me to coach others in that direction of self-care, it hasn't been something I've practiced on a consistent basis. I bless my body for its patience and do commit to regarding it with tender care.
An important warning sign of a tsunami is the vacuum effect. When the trough, or the low point of the wave is reaching shore it sucks coastal water seaward exposing the sea floor. Within about 5 minutes or so after this recession the wave's crest and its enormous volume of water crashes onto shore. Tsunamis typically come in a series of waves, not just one big sweeping wave.
This week has been my emotional tsunami. The past month I have "sucked it up" and seen the water line recede, exposing some of the sea floor. Well, this week the waves have come crashing down.
I came home from work sick on Tuesday. Frustrating. I need all the vacation time saved up for when treatments begin. As of today I'm still not feeling well and can't do much around here. I don't like this. However, being weakened physically I believe allowed the wave of emotions to break so that I would/could actually get in touch with all that the past month has meant.
I sobbed in grief over the loss of health once again, the inability to care for my family the way I'd like, the thought of not being here with my family at all. I've been through the "cancer diagnosis" grief process before but this is a different experience. At age 17 when I was diagnosed with bone cancer I grieved the loss of independence, health and being able to remain an active part of my social community/school. Now I have a husband and little people in my life to think about and it adds a whole new dimension to this process. Not only that but the type of cancer I've been diagnosed with this time requires a different type of coping. Aside from emotional coping, bone cancer called for quite a bit of physical coping. Surgeries, physical therapy, weeks on crutches, pain; that was the work of bone cancer. Breast cancer is a different thing altogether. It impacts the very aspect of your image and identity as a female human person. I'm sure there will be more I have to say about that as time goes by.
I've been reading some of the things I wrote when going through bone cancer treatment and am trying to draw strength and encouragement from my 17 year old self. The following was written just a couple weeks after my eighteenth birthday, also a couple weeks after my limb salvage surgery to remove the tumor from my femur. I didn't know then that it would one day serve to encourage me at the point of another cancer diagnosis.
"November 25, 1991
A whole month has gone by and all I have to say is, 'I missed it!' That could be considered a blessing to me since I don't have anything FUN to occupy my time. Nothing aside from fighting for my life and sanity, which at times seem so far out of my reach I wonder if I can call them my own!
To some my situation could seem sad: a nice, young girl having to suffer with such a disease as cancer, weeks on end away from home and stuck in a hospital. As for me, I consider it a blessing...and sad too. Sad for ANYONE to have to suffer in such a way. Yet, as we are weak the Lord is strong and will so strengthen us.
The Lord reveals Himself in His precious time.
When the hours on a clock mean nothing, and
A millennium is the twinkling of an eye.
He may come slowly, He may come now.
The fact remains, whether a year or a day-
He will answer your call.
I sent this poem to my friend Steve to try and comfort him in a hard time. I wrote it, now I have to believe it. I do believe it in my heart, but to live that truth..."
And so, here I am in the midst of this emotional tsunami trying to live that truth. I will continue to share it for encouragement and comfort. I'm not the only one in this world that is going through something. We all have "something". So even as we hold on to our Rock in the midst of the waves, let's believe together that God will reveal Himself and will answer our call.
I had a difficult appointment at the University of Chicago on February 24th. I left there feeling devastated. It wasn't the experience I had hoped to have and I felt discouraged; as though I may never find the right health care team for me.
I've been in the "information gathering stage" and the "team building stage" for a little bit now. It has been an important process but has begun to weigh on me. A couple days ago I was so wound up and bound up in all the information and frustration that I couldn't see straight. Then, a friend suggested I talk to one of her friends (thank you, Kate!) and it was a God-send. This new friend and I had a long conversation late into the night (thank you, Jori!) and she shared with me about her journey navigating the rocky waters of breast cancer diagnosis, treatment, surgery and the whole nine yards. The similarities between the two of us made the conversation that much more encouraging and informative. I felt so light and even joyous by the end of the conversation. I had a sense of direction! Even Pete commented on how good I sounded when I was able to share with him about the conversation and my thoughts as a result.
At this time I have an appointment scheduled at The Block Center on March 11th and I have a couple other professional individuals I would like to confer with and then will make a final decision regarding a treatment team/plan. I believe I already have this in my mind, but need to have these other conversations for confirmation. As I wait for these final conversations I think about the steps I have already taken since the possibility of cancer even came into being.
My mom arrived at my house on the day that I received "the call" and immediately began to lead me along to make caring for myself a priority right now. This is something I've struggled with in the past and know now more than ever, this needs to change. So while it may seem as though I'm taking a long time to "do something" to deal with this diagnosis, I want you to know I AM doing something.
My focus has been on changing my environment. This involves a number of things. First, I'm changing the environment within my body from a toxic to a balanced one through the use of supplements and a strong nutritional plan. Dr. Wahls has an excellent Ted Talk called "Minding Your Mitochondria" from which I've taken a lot of my ideas for green smoothie ingredients. I've cut out refined sugar and starches/breads. My blood sugar is so well managed now, it's awesome! One of the fringe benefits.
The environment of the mind is constantly "under construction". We, all of us, are ever growing, learning, changing and so that environment is an evolving one. The mind can, however, have consistent overtones of positivity or negativity, anger or peace, faith or doubt. I have been focusing on responding in a positive manner in all situations, managing my anger to remain calm/peaceful and pressing in to my faith to manage the fear and doubt that would threaten to creep in at such a time as this. I'm learning to maintain a positive, healthy environment in my mind.
And finally I'm making changes to my external environment. This effort has lead me to two specific tasks: decluttering and organization. I've always been fairly organized but have been working on becoming more so, especially now as I am juggling doctor's appointments and very soon treatment with two jobs and a family. Organizing my medical records/information has been a worthy project that not only serves to prepare me for upcoming appointments but also has decluttered my living space. In the arena of decluttering I am learning to throw things away, recycle what I can and to donate as much as possible. When there's less to fuss over in my immediate space I am more likely to take a moment to relax.
That is the abbreviated version of what I am doing. I am preparing myself mentally, physically, emotionally and spiritually for the long haul in this cancer treatment process. I intend to be a more peaceful, healthier and happier individual period.
