Does choosing hospice mean giving up?

Just a little food for thought on a topic that has been much on my mind of late. We all flow through the seasons of life, and as we approach middle life and beyond, knowing the reality that our parents are reaching their winters is something to consider…

Does choosing hospice mean giving up?.

Que Sera Sera…The Questions of Life

fond memories There are times when writing doesn’t come as easy as it normally does. As cathartic as it is for me sit and write my thoughts and feelings, sometimes they are simply just too jumbled up to put on paper. Please forgive the rambling nature of this post. It is much lengthier than normal, and much more confused; but these are the thoughts running through my head these days and as jumbled up as they are in written form, you ought to witness what’s going on in my head! Thank you for bearing with me in this lengthy tome, and hopefully by writing all this confusion down I can once again get back to the joy of sharing glimpses of post-cancer life with you in the future!

When I was little, there was a song from the 1950s that I liked to sing. I really don’t know how the little tune got stuck in my head. Maybe my parents watched the Hitchcock movie that Doris Day sang it in while I was around, maybe it was still popular on the radio in the late sixties, or maybe my mom–who did a lot of humming around the house as she worked–used to sing it. All I know is that the song was a childhood favorite of mine–so much so that it is on my iTune playlist decades later.

mom and meThe title, Que Sera Sera, literally means whatever will be, will be. Often I find myself humming this little song when I need a reminder that life is what it is and we must simply accept it for what it is and move forward with grace. I guess it’s a more pleasant way of telling myself to suck it up and deal with it.

Right now I am at my mother’s home, visiting as she once again faces the decision whether to try a different chemotherapy route to treat her Stage IV lung cancer–a journey she has been traveling for over five years. While she was resting yesterday, I read this blog post by The Sarcastic Boob, reposted by mainlyhopeful. This article made me stop and think of things which I have forced to the back of my mind for quite a while–all the normal questions that flood over a cancer patient as they turn the corner into the world of cancer survivor. Sometimes these questions, and others like them, flood through the minds of late term cancer patients, as well. What do you do with your life when you no longer fit in the ranks of warrior/patient/fighter and finally find yourself in the much-wished-for status of survivor/post-treatment? At what point does this question cease to matter? What do you do if cancer returns? When does life fully resume it normalcy and cancer no longer plays a role in your day-to-day thoughts? When can you stop the fight? Do you even want to? 

Christmas 1972Life for the rest of the world continues on at the same pace as before. A never-ending circle of appointments, commitments, blessings, curses, fears and joys spinning chaotically around in a turbulent mass of confusion. But for the cancer patient during the days, weeks and months of treatment it seems like life slows to a standstill. Things still happen around them, events still take place, people come and go, but the patient in treatment is focused on only one thing–fighting to live. When that long-wished-for-prayed-for-dreamed-of day arrives and again they are thrust back into the land of the chaotic, stressful cycle of life, a tangled web of thoughts and emotions swirl inside the survivor’s head. Where am I? How did I get here? How do I stay here? Why is it all so difficult to manage? How do I survive this mass of confusion spinning recklessly out of control all around me? Do I even want to?

It’s scary to think that last question could even cross the mind of a cancer survivor, but let me tell you, IT CAN–and it does. It’s not that you want life to end–after all you fought the battle of a lifetime just get that lifetime back. You fought to win. Now you are faced with the question: what exactly did you win? You won life in the real world. Not a fantasy, not an idyllic dream, but messy life in the messy real world.

graceland--a little girl's dreamBut the real world seems a different place than it was before your journey. In reality, you are a different person and the world is still the same chaotic, mixed-up, confused mess it has always been. We as survivors have fought hard and relentlessly and have been dreaming of the day when life would be gained and peace would reign supreme. Only it doesn’t.

Just as it did before our diagnosis, life continues to give us hurdles to jump, burdens to bear, crosses to carry, other illnesses to face, sadness and stress to overcome. The desire to just relax and enjoy LIFE–to do enjoyable things with loved ones, try new things, see new places, experience new experiences–has to take a back seat to the daily “getting the job done” just as it did before our diagnosis. The world seems not to care that we want something different, something more.

1989 wedding dayFor many of us survivors life was a lot less stressful and chaotic before our battle with cancer, simply because we were able to take the easy, everyday tasks for granted. We now have to think through our daily tasks, prioritize our everyday mundane chores. There’s not enough energy to make it through all the things that must be done, so we must pick and choose the most important. Gone are the days when we could perform our daily tasks with blind and unthinking “muscle memory.” Living and doing takes a lot more energy than it used to–energy many of us no longer have.

Sometimes the easy tasks, like getting dressed, take more time because we simply can’t feel the buttons in order to put them through the buttonholes–our hands continue to be numb after weeks of toxic drugs coursing through our veins. Sometimes lingering balance issues make maneuvering around stoves and other household equipment a seriously dangerous endeavor. Sometimes residual fatigue makes getting through the daily routine without a nap a thing of the past–or else we fall asleep in our mashed potatoes. Often, chemo brain continues to plague our ability to stay focused long enough to remember what tasks we need to get done, or keeps us second-guessing whether we put the towels in the dryer (often we didn’t)!

fixing pancakes with grammyThis is not the life we envisioned as we sat hooked up to our little friend, the infusion pump, for our regular treatments. This is not what we dreamed for ourselves as we fought our way through the trenches of cancer. Now this world we so desperately wanted to rejoin seems a very unfriendly place. A place where we have difficulty maneuvering. A place where most people have no idea how we feel, why we feel that way, can’t come close to understanding, and sometimes it feels as if they don’t even care to understand. Why can’t we just get past it?

There is a reason many cancer survivors are diagnosed with PTSD (post traumatic stress disorder), and why many people outside the cancer battlefield have no understanding of why a cancer patient could be diagnosed with a disorder that is commonly reserved for the soldier. What the world doesn’t understand is that cancer survivors ARE soldiers. We have faced war. We have faced death. We have faced destruction. We have been fighting. Just like a soldier returning from battle, we no longer fit in the real world…the world not filled with constant battle and destruction and sickness and death. We, like soldiers, merely want to rejoin the world we left the way we left it–in all it’s naive, innocent, pseudo-peaceful normalcy. We have been changed. We no longer see things that way. And life is now filtered through a different lens.

a girls' road tripThe other reality is that once we pass through the ranks from newly diagnosed to patient to survivor, our view of the world we left behind might possibly be a little skewed. In our euphoric dreams of a bright tomorrow, we saw the yesterday we left behind as something far more perfect than it really was. The reality of life is that for every person on the planet, every day is a battle of sorts. Questions arise, tasks need completed, jobs to perform, crises to overcome.

In the struggle for survival on this harsh and sometimes unforgiving planet, it is our choice to determine how we’re going to face each of these hurdles. Do we face them with grace and compassion or do we face them with anger and frustration? Do we choose to continue the fight, do choose to crawl in a hole and give up, or do we choose to take each situation as it comes, living through each moment as best we can, trying to glean the most from each experience without struggling or complaining? If we choose not to fight is that giving up or is it simply a matter of letting go and living in the moment?

love for a lifetimeAs I watch my mother struggle with the decisions she again must face, I too struggle with how I would handle those same decisions if I were in her place. Were I in her place, would my filter be one of continuing the battle using every available weapon, or would I put on my Whatever Will Be lens and simply want to try and enjoy what time I had remaining before it all is gone? And in the giant scheme of life, is either filter truly more correct than the other? Each individual has his own choices to make and those choices are only right if they are what is best for that individual and those they hold dear.

Sometimes fighting is good. Sometimes it is necessary. Sometimes it is the only road you are offered. Even in the midst of the fight, we can learn to accept whatever life throws our way. Que Sera Sera. Whatever will be, will be. Because in the end, we have very little control over what life actually tosses our way. What hurdles, battles, crosses we must bear on our journey from birth to death. We also often have very little control over what joys are casually tossed our way like bones to a hungry dog. What we do have control over is how we accept each one–hurdles and joys; crosses and blessings; battles and victories.

I’m not sure what the answer is–or if there is even a question. Life is truly a confusing riddle, a mixed bag of goods and bads and otherwise. I know when I face each day with my faith in God on solid ground and a confident grip on my que sera sera philosophy, that day seems to be much more peaceful and joy-filled, despite the aches and pains of the hurdles I must jump along the way. But that is simply what works best for me. Que sera sera…

Starving Cancer: Ketogenic Diet a Key to Recovery – Health & Science – CBN News – Christian News 24-7 – CBN.com

Today is Triple Negative Breast Cancer Awareness Day (just ask Governor Chris Christie who signed the declaration in New Jersey just two days ago!); so I am sharing some articles that have interesting tidbits of information regarding TNBC and ways to possibly prevent cancer growth.

My naturopath recently placed me on this diet plan (without calling a ketogenic diet) as a means to flush my system of the “toxins” I eat which seem to be causing systemic inflammation–leading to a myriad of health complaints including irritable bowel syndrome, diverticulitis, postural orthostatic tachycardia syndrome (POTS), chronic migraine leading to brain inflammation (no joke!), and an overall feeling of general blah-ness! Have been on this diet for four weeks, and I must say, it is slowly but surely easing a lot of my problems. Take a look for yourself!

Starving Cancer: Ketogenic Diet a Key to Recovery – Health & Science – CBN News – Christian News 24-7 – CBN.com.

Key enzyme missing from aggressive form of breast cancer, groundbreaking study shows

Key enzyme missing from aggressive form of breast cancer, groundbreaking study shows.

Questions and Answers

Question Mark Graffiti
Question Mark Graffiti (Photo credit: Bilal Kamoon)

Do you remember playing the game, 20 Questions? You know, the one where someone asks a question like, “Does it have hair?” and you answer Yes or No, and they get 20 chances, while asking a question each time, to guess the right answer. You remember how hard it was, sometimes, to actually guess the answer? Sometimes you thought they didn’t even have an answer? You were simply asking twenty unanswerable questions? I’m beginning to feel like my health has twenty unanswerable questions.

In some ways I am a very inquisitive soul; in other ways, not so much. The answers (or lack thereof) to the giant questions of the universe never really interested me. Those giant, looming, ever-existent questions like “How did we get here?” “If there’s a God where did He come from?” “If God created us, how did He do it?” “Why?” “How old is the universe?” and other such curiosities have never really peaked my interest all that much. I don’t really need to explain the truly unexplainable. For some reason (maybe I am a very naive person) I can take it on faith that these things DO exist, that God created them all in His own good way in His own good time for His own good purpose, and the answers–or lack thereof-really won’t affect our daily lives all that much. I can even take my own personal existence on faith that God created me for a purpose…even if I’m not always certain what that purpose is.

Yet, when it comes to ordinary questions surrounding everyday life, especially my everyday life, I am profoundly curious. When I have the sniffles, I want to know what is causing them and how to cure them. When I have a stomach ache I want to know why, so that I can get rid of it. When my sons are struggling with something I want to know what is bothering them, so that I can help them learn to manage it.

When I was diagnosed with breast cancer I wanted answers. I needed answers. I wanted to know exactly what kind of cancer, how aggressive, where it was located, how big it was, how that kind of cancer operates and most importantly–how best to treat it. I was on the internet and in the book stores and in the library for weeks, researching…seeking the answers. I spent most of the time in my doctors’ offices asking questions. The more answers I got, the more I felt “prepared” to face whatever I had to face. As I once explained to my oncologist, I needed to know what I was facing so that I knew exactly how hard I had to fight in order to win.

All this brings me to a confession–I have been fighting a plethora of illusive symptoms for the past seven months, much of which I haven’t bothered to mention to very many people, least of all wanting to “bother” my blog friends with such mundane occurrences. Weight gain (can you say, blimpo?), brain fog, headache, bloating, balance issues (dizzy and not even blonde!), constipation, dry skin (want some crepe paper?), fast pulse, low blood pressure, brittle nails, dry hair, fatigue, aches, pains, indigestion, chronic cough, runny nose (and runs and runs and…), constant colds and infections… The list goes on. The list grows on. Every week it seems like I add a new symptom or two.

I have been shuffled from doctor to doctor to doctor in an attempt to find answers. No one seems to have any. Each new doctor tries to throw a new drug into the ever-growing concoction that is brewing in my system–most of which I have told them I will not take until they tell me what is causing these symptoms and why the drug will work to fix it. (Because many of these drugs cause their own set of symptoms, I hate throwing them at symptoms without the answers to know what is actually causing the problem to begin with.) As each month passes I am becoming more and more tired, more and more tired of being tired, and more and more depressed with the thought that there are no answers available.

I am having a very difficult time accepting the fact that my general health could possibly fall into the realm of the unexplainable. Do I truly have to just “take it on faith” that I will continue to be sick and tired without any explanation at all as to why?  Without any ability to make it go away? Must I simply accept that my life will be forever filled with illness, fatigue and…questions? Unanswerable questions?

I saw my oncologist for my final 3-month checkup prior to having my “leash” extended to 6-month checkups. She listened intently as I told her how I’ve been feeling (we had discussed some of it back in November) and I handed her my written “laundry list” of ailments. She said I have two choices, head downstairs to the endocrinologist (another doctor!) or send a request to my insurance for the approval of a full body PET scan. The amazing thing–well, actually there are two amazing things–is that she sincerely felt that a PET scan might be warranted in this case, and even bigger than that…I turned it down.

PET scan image3699-PH
PET scan image3699-PH (Photo credit: Wikipedia)

PET scans are the high-tech machine version of Sherlock Holmes when it comes to cancer. While the insurance companies and doctors most often use them only as a tool for staging cancer once it has been discovered, they are very good at finding small cancers lurking in the shadows that can be missed by other scans. Most cancer survivors would give their right arm for the chance to have a PET scan a few years out from treatment, “just to make sure.” A year ago–even six months ago–I think I would have jumped at the chance. But for some reason, I chose the endocrinologist.

I have lived for over 36 of my almost 49 years with Hashimoto’s thyroiditis and I am fully aware of the fact that, despite my tests all coming back fine, most of my symptoms are those of hypothyroidism. While I might opt-in for the PET scan if the endocrinologist finds nothing going on (my oncologist was kind enough to leave that option open) I feel that it is in my best interest to follow this opportunity to delve deeper into my endocrine system. You see, I really do want answers. I want answers that will give me health now–and more importantly, health for life. I have felt “off” for much of my life and many of these symptoms–while not having been around since treatment–had grown burdensome shortly before my cancer diagnosis. I don’t know if they’re related. Obviously, the doctor is concerned enough that she would offer a PET scan–but even if there’s no cancer brewing yet, I want to make myself healthy and strong enough to keep it from returning.

2012 in review

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

The new Boeing 787 Dreamliner can carry about 250 passengers. This blog was viewed about 1,300 times in 2012. If it were a Dreamliner, it would take about 5 trips to carry that many people.

Click here to see the complete report.

A New Year of Balance

Madison Square Park, NYC
A little taste of spring…baby, it’s cold outside!

Every Christmas I hibernate–and yes, sometimes, like a bear I even grow a little “survival” fat, sorry to say. It’s the restful, away-from-it-all kind of life that I gladly sink into during those two blissful weeks my children are on Christmas break. I focus on them, on the Christ child whose birth we celebrate, on my faith in Him, and on my life. Sometimes I even focus on changes I want to make in the coming year.

I’ve never really been much for resolutions. They seem way too much like just one more thing to mess up. And heaven knows, most years I have way too many of those already. But I do have a few friends who have been using the “My One Word” approach to life transformation, and I decided to give it a try. Last year, without reading the book or any other detailed information, I chose the word “THRIVE.” After a year of chemo, surgeries and radiation, and another year of slowly rebuilding my strength, I desperately desired a thriving and active life–I thought.

What 2012 brought to me ended up as CHAOS instead of THRIVING, so as I sat in my peaceful hibernation state I pondered over how I would approach 2013, what was I seeking from myself and my life in this new year? And I knew in my heart that what I am always striving for in this chaotic world in which we live is SIMPLICITY. I am a minimalist at heart, but life and living with 5 other very active and creative (pack-rattish) souls has filled my world to overabundance with stuff and activities and energy and…chaos.

As I thought about my striving for simplicity in the coming year, I decided it might be a good idea to actually read the “My One Word” book (by Mike Ashcraft & Rachel Olsen) before truly embarking on this journey. Maybe if I knew the “rules” my focus wouldn’t turn to chaos by mid-June like it did last year! To be quite honest, I am still in the process of reading this astounding little book, but am quite taken with the approach and have been looking more in-depth at this word I have chosen, trying to make certain that this is truly where my focus needs to be. (Of course, it didn’t hurt that the book began with my favorite bible verse: “So teach us to number our days, that we may present to You a heart of wisdom.” -Psalm 90:12 NASB)

This morning as I drove home from taking Josh to school, I was pondering the word SIMPLICITY, and some of the synonyms I had discovered in last evening’s research through the thesaurus. As I thought about some of these words that I, quite frankly, didn’t associate with simplicity, the words got all a little jumbled in my brain and I felt once more the stirring stress of disorder. What I need, I thought, what I really need, is BALANCE. And then it all clicked. All the puzzle pieces fell smoothly into place.

Balance is what I have tried to teach my children since their early days. My children, by nature, are all rather obsessive, and when they find an interest they can spend days doing nothing but the one thing that interests them. They can even forget to eat and sleep. So I have tried to instill in them a sense of balancing their lives and their activities. Without balance we have disorder, discord and chaos…and stress.

On the days I actually watch the news, the thing I notice most in the world, is a lack of balance. Our lives spin completely out of control and we allow the circumstances and situations that arise around us to rule our emotions, our thoughts, and our actions; instead of balancing the circumstances against the eternal effects of our thoughts before putting them into action. Balance and self-control are sorely lacking in society today.

A synonym for BALANCE is HARMONY. HARMONY is also used in place of UNITY. And UNITY is, amazingly enough, one of those synonyms of SIMPLICITY that I was amazed to find on the list. In seeking a more ordered and SIMPLE life, I have come full circle to a concept that has had deep meaning and purpose in my life for years. Only this year, I shall strive to bring BALANCE to my own heart and mind before pushing it on others. It is the balance, or harmony, between living life in the real world and focusing our hearts and minds on the Creator of all things. The unity of our souls with His order for our lives. The simplicity of a life ordered and centered on Christ and His eternal peace instead of on the chaos and discord of all that surrounds us. And maybe, in allowing God’s true harmony to fill my life, I shall bring balance to those around me, as well.

I leave you with this passage from Job 22. In the God’s Word Translation, it uses harmony, the synonym for my word, balance, making it a perfect memory verse for my focus word. But in the Message translation it more fully encapsulates the essence of what I am seeking this year (and every year). Thank you, God, for leading me to this excellent summation of a life lived in balance with You! May we all strive to be in balance with our Heavenly Father and the chaotic world we live in. Happy 2013, everyone!

“Be in harmony and at peace with God. In this way you will have prosperity.” -Job 22:21 (GWT)

“Give in to God, come to terms with Him and everything will turn out just fine. Let Him tell you what to do: take His words to heart. Come back to God Almighty and He’ll rebuild your life. Clean house of everything evil. Relax your grip on your money and abandon your gold-plated luxury. God Almighty will be your treasure, more wealth than you can imagine.” – Job 22:21-25 (MSG)