My Dr said as long as I train slowly and keep listening to my body I can keep training for World Vision half marathon. Raising money for water wells in Africa!
Boy, can’t stop crying this morning! That’s one problem with holding them in and not staying current with tears. When they bust through – there are so many! I have had the urge to stay very busy lately. Organize, organize organize. A little on the frenzy side. Because I am a therapist I know this means I am most likely running from feeling. I slept through my alarm, missing Sunday Worship which bummed me out and started me out in a funk. Then later, I was able to admit that I was feeling sad and then the tears started to flow. A few days ago, I read my latest tumor marker test. Up again. 26. I am scared! I am having a hard time emotionally knowing if I am living or dying! My petscan says my body shows no cancer but my tumor markers in my blood says that a protein that my cancer produces is increasing in my blood. I know many people, if not most would not share these details. They would just be positive for their loved ones and keep a smiling face. I am not like that. I need to share. It helps me to process and helps me to cope. And I hope and believe there are others who when they read this will be encouraged and feel a little less alone.
I am beginning to understand the weight of this. That some days my fatigue is not due to physical exhaustion but due to mental fatigue. Yesterday I felt good and walked 4 miles with my husband. That was awesome. Today I awake and feel drugged. Yes, maybe there is a connection. But how do I know? I need to stay in shape. The World Vision marathon has been helpful in pushing me to walk farther and farther. However, I am honoring two friends of mine that want me to ask my Oncologist if she “approves” of me doing a half marathon. What she tells me is to stay active, to get movement every day but not to strain myself or be too strenuous. So, I think I am realizing the answer. That awareness might have contributed to my funk today. That really bums me out. I needed to cross that finish line. New plan is to split the race with Jim. I really hope they let us do that. Because I REALLY want to raise money for water for children in Africa. For once in my life I want to train. To push to commit and to conquer.
So, how is the Joy talk going? I don’t know. Can Joy and Sadness coexist? Does grief acknowledged and felt allow us to feel joy deeper? Am I just a depressing person who does not think positive enough? This time of year is hard for me. Period. I experience what I can only describe as PTS. Post traumatic Stress. I don’t even know why in the Fall and not the rest of the year but I am MOST grateful for that fact. Here is what happens, as hard as I try to avoid it and to stay in the present, a fog comes into my life. I battle it to not let it take over. For when it does I am awash in body memories of feeling icky and guilty and very ashamed. I am instantly brought back to a 7 year old girl. My muscles get tense, I get cranky. I need people – but push them away. I want to yell and scream and cry. And not be social. Plans often need to be altered this time of year. I do not know how I am from day to day.
Meanwhile, it’s the time of year when things are gearing up in society. The School Year, volunteer sign ups, definitely high season at Church! And of course, what follows Fall? The Holidays. I feel like a bear who needs to hibernate. Just wake me up in Spring and I will be a whole new me.
It’s less severe. My PTS. Shorter too. I can identify it now and talk about it. I get the help I need, I slow down and take very good care of myself. And try not to feel selfish or guilty about that. I am so GRATEFUl the rest of the year I don’t suffer so much and I feel for those of you who do. Who live with PTS all year long.
My therapist pointed out that I am probally feeling vulnerable from having metastatic cancer and that in itself is a trigger. Feeling vulnerable. Makes perfect sense when I say it out loud.
I am tired. I am tired today. My heart is tired. My soul just wants an answer. Am I ok or not? I know its one knowledge God does not give us – how long we have. And I feel like having a temper tantrum regarding that fact. I know logically I have to decide I Am OK. I am alive today. Go enjoy it.
Maybe tomorrow. Today, I think I will take a nap!
So I have been asked to speak at a church women’s Christmas brunch on the theme of Joy. Did they know that joy has often felt like my nemesis? That if I ever write a book or biography I plan to title it “My long arduous trek towards joy. (Inspired by Nelson Mandela’s Long Walk to Freedom). I struggled with depression for a good 15 years. That was mostly under control when cancer hit. All said, tackling being content in life has been a lifelong active pursuit that has not been obvious, automatic, or genetic. I can say that God has brought me a long way. I can share that I have to work at it! When I am disciplined in health it comes much more – time in nature, exercise, nutritional eating, friends, community, prayer, scripture, inspiration, mindfulness meditation- I more often than not feel a sense of joy that I did not know possible.
Today, is just not one of those days.
I still have not recovered from the nuclear isotope petscan, camera down my throat procedure, ongoing iv cancer treatment, my yearly physical and flu shot all in 4 days! I don’t bounce back like when I was 38 doing this same stuff. I’ve been dragging and feeling physically weak. And ultimately, after lots of sleep, that makes me feel sad. I’m very dependent upon feeling good for joy. But, Scripture tells me a different path. Spirituality is often a path of embracing suffering. In my mindfulness meditation I am taught to Pause, Settle down, Be Quiet and Listen to what is really happening inside of me. I am taught to pay attention to my breath. Not judge it, not try to change it just notice it. Breath. In the book of Genesis – God breathed life into creation and saw that “it was good. “ After being raised from the dead, Jesus describes the power of the Holy Spirit that indwells believers and first appeared as a “Rush of Wind.”
Join me as a I venture into understanding this breath of life deeper. For I think that life itself, breath, the creative force of God, is Joy itself. Many wise people have pointed out that to live is to suffer. When we suffer we live. In The Message translation of the Bible Paul speaks about how he begged God to remove his handicap. What he heard back was “ My grace is enough; it’s all you need. My strength comes into its own in your weakness.” 2 Corinthians 12.
INTRODUCTION TO MY BLOG. And I promise future entries will be much shorter!
Years ago I had a blog “patitooleunplugged.” My pastor graciously linked it on our church website which allowed enough followers to find me. Writing helped me cope with the indecencies of harsh cancer treatment for advanced Her2 breast cancer with a young husband, and two young boys age 3 and 6 years. The blog was funny as I had a platform to express all of the silly things young kids do, like Conor stealing my blue soft star and moons night time cap when I was bald. Every morning I’d wake up and find it on his head! Or Jake’s Animal Team stories with each of his stuff animals having a detailed back story. Writing allowed me to stay connected, I could write on the moments I felt good, and read responses when I wanted to.
Fortunately, God gave me another 14 cancer free years. Our sons are both Wildcats at University of Arizona following their passions, maturing and figuring out their own faith and lives. During my first blog season I eventually lost the desire to write. My closest friend’s younger brother died in a horrific car accident with several siblings all in the car. They were on their way to visit their youngest sister who had just lost her infant to SIDS. This sort of left me breathless and wordless. (The wife and 3 kids found a way to move forward btw, eventually even remarried and are doing quite well today). I was honored to be a slight part in walking with my high-school friend as she navigated the intense grief.
The writing bug has returned.
By 2009 or so, exhausted from the cancer journey, I made a momentous decision and gave up being an associate pastor which up to that moment had been my consistent lifelong dream. This is something I cannot see happening had I not had Stage IV Cancer. Right around that same time, my husband (who never thought he was called to be the main preaching pastor) changed and we took a giant leap of faith as he was called to pastor a church in Tucson Arizona! I had never been to Tucson. As a Southern California girl all my life- I very much doubted during the initial visits and interviews that it would be good for us. God had other plans and made it clear. Suffice to say WE LOVE Tucson and have been immensely blessed by following God’s call. Our boys went from the Pacific Ocean to Gila monsters, snakes, scorpions, and herds of javelina running by our house every day. Cool! We have never looked back. We enjoy the slower pace, the lack of traffic, the tranquility in the ancient desert air, diversity, the ability to have horses and living life with the most fulfilling close community we have ever had.
I could never had imagined back then that both our boys would end up choosing UA a world away and yet only 30 minutes from our home ranch. What a blessing this is for all of us as we navigate the uncertain future.
For you see, after 14 years of no cancer, perfect scans, perfect blood tests and 5 oncologists later, (they kept moving out of Tucson) one that I had only just met called me last November 2017 and said “I can’t believe it but your tumor markers in your blood are quite high”.
The BEAST had returned. Same kind METASTISIZED. What a terrifying word. (I’d like to ban it). For until quite recently it most often meant a near impending death. Miraculously the only place that “lit up” in my nuclear scan was mediastinal nodes. Little things outside of my trachea in the chest cavity and hardly life essential. So, after 6 rounds of chemo, and targeted Her2 therapy called Herceptin and Perjeta I seem to be doing well again. Seem to be.
And that is why I need to write again.
I am learning to live while dying. NO I have NOT been told that I am dying or anywhere near the end. And I will admit that this blog title is bothersome for my fans and loved ones. Yet, the reality is we all are dying! The one sure thing next to taxes right?! Once one hits 50 this fact does become a bit more real and naturel seeming. Still having been raised in perpetual sunny southern California among the wealthy, successful and perpetually gorgeous no matter the age – death is not something we are taught to incorporate into our life awareness.
But, it is fact. Other cultures are much better living life aware of it. Indeed, I hear stories of rural poor Africans who approach every day with the hope that this will be the day the Lord returns! How many of us do that?! Indeed it is a privileged western perspective that one does not want to die. These other worlds enlighten and enrich us, yet still we can only be who we are, the sum total of all of our own experiences, influences and culture. So, right now, I feel smacked in the face with the possibility of the BEAST spreading at any moment ultimately leading to an early grave. I can’t help it. People don’t want me to go there. But,I have seen it far too many times than I care to count. How quickly the end can come for those fighting the beast. Beautiful people. Strong, resistant God fearing people.
The thing is – I am STILL cancer free at the moment. I have a Petscan very soon to verify this. And continue to receive scans as well as targeted treatments every 3 weeks. Yup, every 3 weeks through my new port. I described the funny lump on my shoulder area as having secret powers to my young boys. Funny, how perspective is constantly being updated. After I felt better from months of moaning on the couch during chemo, I texted my older brother that I was struggling emotionally to forget about the risk, and to focus on living well. “ I am finding having Metastatic cancer is kind of a downer I wrote.” (He always got my dry sense of humor). Now, just a few weeks later, with my CEA tumor markers slowly but consistently climbing back up during the last six months and for this first time, now being “out of normal range” again I am revising my sentiment. Hey, its not so bad to LIVE with metastatic as long as I keep living! Right?!
The rising counts of a tumor marker in my blood have terrified me. I am sorry for those strong people of faith and those in the industry that KNOW one tumor marker rising in the blood DOES NOT mean that I am near death. My husband has sagely asked me to quit “automatically going there”.
We hear that new treatments are being developed every day with great promise for a cure for cancer. One hopes this will include my particularly nasty persistent little buggers Her2! There are other treatments even now to try should the ones I am not be sufficient, and one clinical trial I may qualify for right here in Tucson should the need arise. Plus, we have a Mayo in Phoenix. Still, last time 14 years ago, after all was suffered, I WALKED away – physically weakened no doubt but firm in the knowledge that I was DONE. I was once again clean and free. I lived with very little fear of its return as we continued to test, and even continue treatment with pills and surgeries ensuring I would finally be permently put in menopause! (My period kept coming back! Even after 6 months of dense dose chemo!) I KNEW God had healed me and I was fine. Regarding the new fear, I do acknowledge it is a possibility that I now live as a more balanced person. I am not as cut off from my feelings. Perhaps, I am more emotional, and feel vulnerable because I am much MUCH older than I was at an otherwise healthy and strong 38.
But, here is the deal. NO ONE can tell a person how long they have to live. NO ONE. My hope in writing is to share the journey of cherishing ONE day at a TIME. Like Fuller Professor Marianne Meye Thompson, I write not to say what I already know but to figure out what I already know. When I live in the present moment, I am aware of the intense beauty that surrounds me. Of my meaningful work with people in trauma and bringing them around horses to facilitate healing in a way a few years ago I had not even heard of. Of the numerous blessings of joy my life now inhabits. My large garden, my 3.5 acre ranch, my healthy boys and loving, adoring, ridiculously positive and attentive husband. Not being strapped financially as living in So Cal always entailed. My Team Pati and literally hundreds of prayers from around the world!
So, I am reaching out to my beloved community near and far for not only healing prayers but to be faithful to whatever God has for me. To learn to live the best that I can with full gratitude for all God has provided – in the time I have left. I hope that this blog will encourage others to do the same. I have received incredible nourishment from the practice of mindfulness, relaxation and learning to simply inhabit my own body more fully. I am a somatic experiencing trained practitioner and this psychological theory has greatly enhanced my work and my own soul. Sprinkles of this to come… Buddhist teachers like Tara Brach are assisting me to move towards letting go of resistance, the sense of carrying on in my body as if “something is wrong” and instead work towards radically accepting what is. None of these things are Christian outright.
But, here is the deal. I feel that I can learn to relax, to let go PRECISELY because I believe in a loving God who is in control and has me and my precious family in her arms. God has got this. No matter what the final outcome is. I haven’t lived centered in the reality of this truth all that often. Calm, peace, a non anxious presence and positive thoughts are not my natural set point. But, one of the major MAJOR gifts coming from all of this is the immense Love I feel from all of you. Being forced once again to slow down and focus on what is most essential. To do our bucket list (Jim and I are going back to France this Summer) whoop whoo. And live – ALL OUT, trying new things because really why not? Knowing- really knowing that I am not alone on this journey. So much of my young childhood I had to deal with very big overwhelming things by myself, that still to this day even though God has proved himself time and time again, I often forget I was never alone, I am never alone God was and is there. I can relax precisely because of my faith. And the more eastern practices help me absorb this better. Besides I always point out God chose to be born in the East not the West. Jesus was far more likely familiar with the Eastern culture than we are.
My faith helps me know that only God knows when we will be born and when we will die. My favorite worship in Ash Weds. Where we are all reminded that we come from dust and to dust we shall all return. There is something solemnly beautiful in this service that always comforts me. Of course, I have tremendous comfort of the knowledge that where I am ultimately going this – overlapping veil of the kingdom here and now and yet fully to come – that fully to come is worth everything. I imagine myself even in death, able to be near my family. Watching over and protecting. Smiling. I will never leave you. And one day we will all be together again. Forever.
I also write because God forbid I don’t get to see my young adult boys marry, or have children, or finish my dreams and hopes, I can leave a legacy behind in writing for them. I hope that my truest self will shine through these words. That these writings will be become living documents, ones you are always able to look back upon, when you miss me or wonder what I would have said or how I would have handled such a situation. How much fun my grandchildren WILL have on our ranch. Digging, jumping, climbing, riding mini’s, giant tortoises and getting goat kisses. Also this is part of my legacy for them. By then it will probably be the last remaining open land left in Oro Valley. But, remain it will.
Because ultimately, that is why I want more time, more life WITH YOU. I truly care about little else. My intense love for you assisted me in beating the first battle and I hope upon hope that it will do the same with the second. May you know in your bones how fiercely I love and believe in you both. It is largely why I will submit to awful treatment. May you always take care of one another and stay close. May your kids be the cousins that you never got to see.
May you never feel left or abandoned. May this writing help us to stay close as we journey together even as you form your own lives and chart out new paths. For you know, I want nothing to do with holding you back in any way. May these words contain the things that I want remembered. Quotes, the memories, poems, authors, wisdom, Scripture all gathered in one place. To cherish.
Most important, yes grieving is essential and natural. But, never let your precious life be consumed by it. For me, rise up, get up and go on. Making the most of loving, of enjoying and growing close to your Creator. Let go of any bitterness, for we do not understand what we see only dimly God’s plans on earth. No one is promised anything. Or anything easy anyway. Serve others and live balanced, humbly and always eager to keep growing.
In closing, Thank-you heavenly Father for the gift of writing and may you be honored within this attempt to know you more fully. May you grant this writing – wings to find its way to those who may be encouraged by it.