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Archive for the ‘Real Life’ Category

The Chaos of Cancer

In Deep Thoughts, Junk Drawer, Real Life, The CANCER on June 6, 2016 at 8:27 am

 

This may just be a kind of stream of consciousness kind of post and make little sense. I do not make much sense lately and the chaos of my mind grows daily. From what I read (and I have read a lot about brain cancer over the last 5 months, if you know me at all you know it is pretty much the biggest duck I have ever had in my life.) This chaos and confusion is pretty much par for the course, and I am not surprised that 6 months in I would be questioning everything I think, do and say.
Steadily losing control of my emotions makes me feel like a raving lunatic on some days. Since I have been known as kind of a volatile person all my life, (Ah…the redheaded stereotype follows you from birth, but in my case, unfortunately, mostly fitting.) but this kind of volatility is different to me, instead of the pretty firework that goes boom and scares the hell out of you then gives you a pretty show for a while, and a few ooooohs and ahhhhhhs, I am the box of whistling chasers that accidentally got set on fire that sends everyone running and jumping and fleeing for their lives. This is why my prayer is for peace. Let my mind be at peace.
Once, years ago, I was meditating by a pond and my eyes were closed, and at the end of the meditation I opened them to a completely mirror-like pond, with one lone duck swimming gently across in front of me, barely making a mark on the water. My thought was: Yes, it looks tranquil, but he is paddling like mad underneath. This is the way I feel most days. Tranquil to those around me, but pandemonium within.
There is so much that adds to this constant confusion besides the fact that the tumors are now invading the space in my brain that controls such things, so many outside influences that I have no control over, and there is the unfortunate reality that because of what is going on inside I must give up more and more control of my life to other people on the outside. This, to a woman who for years has loved her silence and solitude. Independent and intelligent and oh so intolerant of the idiots of the world. Highest on my list of pet peeves is incompetence and injustice. They sometimes are seen side by side. There is also the trust issue. I have been screaming at people for 3 years about various odd maladies I have suffered from while they have sat with tunnel vision on one symptom which I have had for 30+ years–my blood pressure, all the while ignoring my presenting complaint. (Ok, so I inserted an old rant here, thank you, drive through) The only reason I mention it is because it has caused a great deal of trust issues with regards to what we foolishly call Healthcare in America. (Oy, and I digress into politics, not my intention, [insert an emergency cute kitten picture here.]
When I was nursing I was a very good nurse. Without the least bit of conceit of self-aggrandizement, I can honestly say I was one of the best.  So my transition over to the Hospice end of this journey has not run smoothly.  I expect competence from people. I expect it most from professionals and salaried folk, even more so if I believe they should have as much smarts as I do— People with degrees should not be morons. One problem I think is that to the non-discerning eye, outwardly I do not look half bad. Just a fat, bald, slow-moving old woman. No big deal.  But it is in my brain. That organ that pretty much controls everything.  And it boggles my already boggled mind that nurses would not understand that to bombard that frizzled brain with a lot of information at once is like putting water through a sieve.  Changes? Oh my holy Lord. I am lost.  And again I look like a raving lunatic, because I cry, laugh, scream, and stare vacantly at inappropriate times.  I would hope they would know this. But some are fooled by the “wellness” I seem to portray. It is chaos. This week Denise has had to take on any communication between the med staff and our family because my short term memory is almost completely gone, and I just screw up any information they give me.
So this seems to be turning into a kind of physical update, So I will give you a rundown.  I am progressing rapidly it seems to me. I do not have as many “good” days as bad.  A bad day is one that begins with me waking with a horrendous headache. I must get control of this pain early on, or it will wreck the entire day. I had to get over my aversion to taking “mind altering” drugs, and remind myself that this kind and amount of pain medication was meant for people like me, and just TAKE THE PILL.  My eyesight is going, and I will be blind in both eyes soon. As most of you know the tumors affect my language center and I am once again losing that. It has also, this time, affected my speech, and talking is hard. I slur my words, and sometimes cannot find the right one for ages, as my brain spins its multitude of roll-a-decks up there.  The prednisone has taken most, if not all of my muscle mass in my legs. Any strength there comes from prayer. I can walk (with a walker) perhaps 100 feet before the legs begin to wobble and I must sit and recharge.  If I wait or am not near a seat (my walker is one with a seat, so is usually near by) the risk of my legs giving way  is high, and a fall is imminent. I have fallen 4 times so far, but thank God with no real injury. I cannot get off the floor by myself, so I am the infamous “Help, I’ve fallen and I can’t get up!”  Lady.  My last spill was last night, I forgot for a moment that I could not just turn around quickly and spun around to check something and boom there went the knees and I buckled to the ground, the plate in my hand flying to the sky (it did not break) and after some of the pain of the fall subsided I began the scoot on my butt ala crab mode to the bedroom to grab a phone and call in the Calvary.
 There is a big chair in my bedroom that I have found is easiest to get up on and then lift myself up, but this time I could not negotiate it solo.  Eventually Mysi arrived and we got me in the chair, checked for injuries and new bruises. One on the knee. Oh, yea, forgot to say I am now plagued by petechiae  over my arms, and other places. Once again side effect of the prednisone, and I bleed easily. So new bruises seem to just spontaneously appear.
This random little post has now been 3 days in the making. I cannot write long, words fail me. An odd feeling for me, the lady with a head full of words. A house full of beautiful books.  Death has irony as well as chaos.  I am also quickly going blind. My muscles of my legs are all but gone, they cannot lift me without great effort and getting up from any chair is a struggle and sometimes just managing to stand can take me 20 minutes or more.
I hate to appear to be a whiner on her pity pot when I digress into talking about the cancer, or Aunt Jenny talking about her gall bladder operation for the umpthteen time this week,  because that is not my intent or my feelings in all this.  Mainly I just do not want anyone to be surprised when they get the news that I died.  “But she seemed fine yesterday!” And clinically, the whole process, looking from the inside out, is fascinating to me.
It is interesting that you feel yourself dying. Things shutting off or down. Like a long pilot’s  flight checklist. I am flying away.
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Junk Drawer Essay: Pieces of Childhood Continued

In Deep Thoughts, Junk Drawer, Real Life on May 26, 2016 at 5:15 pm

 

I am pretty much certain I have explained in previous posts my idea of “Pieces of my Childhood”.  Perhaps a brief  reiteration is called for, however.

If you live in the same town you grew up in, and also if you live enough years, you will see the town you live in change, and things of your youth will disappear. Some are as simple as a food or candy.(Anyone seen Kraft Fudgies or Post Fortified Oat Flakes the last 10 years?) Others large buildings and landmarks. (The Biltmore Hotel, Elmwood Swimming Park,  Springlake Amusement Park)  When one of these disappears forever I generally just say aloud: A piece of my childhood died today. Sometimes if it was especially significant I will call my sister to let her know that something from our childhood is no more.  This happened a couple years back with the Redskin Theatre. This was the theatre my sister and I sat in all day watching movies over and over and over. They literally paved paradise and put up a parking lot. It was a sad day.

So recently, in Oklahoma City’s revamp of our downtown area (which I approve of for the most part, we have made significant progress in bringing our downtown area back to life.) a piece of my childhood was torn down.

I had a very wayward youth, from the age of 13 or thereabouts I was on the wrong track for 5 years, a hippy runaway homeless street person. The government called me “In Need of Supervision”. Kind of a catch-all phrase for juvenile delinquent I guess. At 16 it caught up with me and I was sent to Tecumseh Girls Town, a “Maximum Security Reformatory” for girls. I never had a clue why I was sent there, I hadn’t committed any crime, and in truth, even the folks who ran the place were confused on what sent me there. But I was there, so I made the most of it. I had never finished school of course, being a street person, and they said I could go at my own pace, so I finished 8th to the 12th grade in one year. Since school was done, I decided to enroll in some of the other elective classes they had, and chose “Creative Writing” given by a sweet woman named Patti Bivens. (I have looked for her on the interwebbies but not found her, if you do know her, point her my way.)  I wrote a lot of poetry and short stories. Patti encouraged me and told me I had a lot of talent for writing. Her encouragement would lead to a lifelong love of writing.

Sometime during the summer of that year there was a Poetry Festival in downtown Oklahoma City, and Ms. Bivens got permission to take two of her pupils to attend. I was chosen as one of them. Off campus trips for girls in reform school was rare and I felt blessed and privileged to be chosen.

It was held at what was called at the time the “Mummer’s Theatre”. A very rare and very unique building (later called “The Stage Center”. ) built in the Exoskeleton Architecture style that had come into vogue in the 70’s, it was either loved or hated, depending on who you spoke to.

 

I loved it. Each stage on the interior was in one of the various modules. Seating was in the round, so the stage itself was in the center of the audience.

 

The festival was very open, and people took the stage to read their poetry. I was surprised when Patti escorted me center stage, my little folder of poems I had written under my arm. I read one which was generally about the idea of being classified in various ways by the Government. I lost this poem, but have been aware all of my life that it was published in the pamphlet or brochure/playbill that they handed out that evening. It is a regret that I do not have that brochure, and I have searched for it online at various times.

It was special to me because I got a standing ovation. It is the only standing ovation I have ever received.  This was also such an affirmation of my worth as a human being, and also that perhaps I did have some talent in writing. Young wayward kids need that. I did.

Every year of my life if I drove past this building I would be reminded of that moment. And now it is gone. They tore it down 2 years ago. A piece of my childhood died.

 

 

Friends and Old Memories

In Deep Thoughts, Real Life on May 21, 2016 at 12:39 pm

My visitor for the past couple weeks would surprise and confuse most who do not know me well, or who have a kind of fixed thinking about relationships and how they must be, and how they must end. I have always tried to maintain the good of relationships, even when they become a memory. Love never ends. Bitterness poisons the heart.

When we first learned I had terminal brain cancer, we knew there were quite a few people who should be notified personally, by a phone call. Some would learn through social media, of course, but many people I know do not use social media at all, some do not even own computers. But also there are those whose lives we still touch, despite distance and time. We live in their memories, and shall continue to do so after death. My sister came to me and said: “Do we call David?” There was no hesitation. “Of course we do.” I could not imagine his learning, perhaps years from now, that I had died and he was only just learning about it through some distant anonymous source or random comment.

David Spangler. He is my ex-husband. Although I have always hated the EX. John and I had long talks about this subject with regards to his wife and my husband. It is harder when you have children by your previous spouse. To EX someone whom you have progeny by, seems to me to attempt to EX that parentage in some way and feels wrong —-parent is a permanent relationship, bound in a special bond of love—to try to negate that is an attempt to negate love, which is eternal. So I told John he could call her “ The mother of his children” rather than Ex-wife, if he needed some proper nomenclature for her.
John and I had many conversations about relationships, and our own unique one, which developed because of my own spiritual and religious beliefs co-mingling with his over the course of 17 years and was mostly known only to ourselves. I was surprised that his sons after John’s death used this to spew so much hatred and grief on me that to this day I weep when I think about it. They never understood that some relationships do not fit into a convenient box. John did, and I am eternally grateful for him, and that God would send this man to me, to care for me and love me, and to enjoy his role as my champion in life, my protector and help-mate. We thought of our relationship as similar to that of St. John the Evangelist and Mary, mother of God. God had given me to John to protect and love. He filled this role with honor. He was an honorable man.

So the question was do we tell David, my husband, that I am dying. Denise made the call. Although we had of course, having no children, “lost touch” with each other, I have always kept track or tried to find those people in my life who still hold a place in my heart. Many of you on my friends list here on Facebook are friends because I never forgot you. I have always loved you. So I knew where he was on the planet, and also his having a father who was a priest in the Episcopal Church, well, priests are not hard to find. There are directories. Who’s who books, and knowing David as I do, I knew he would not be far from his parents. I did not wish to speak first, and Denise and David were very close as well. Our divorce, tho contentious at first, that initial ugliness that happens in all divorces, faded away and all that was left was love and deep regret. Part of this whole dying thing I have learned, is dealing with life’s regrets. David was a big regret. Our marriage was good and strong, but I was a very driven woman, in college, getting my degree, and David, who was so much more intelligent than I, a National Merit Scholar, had no ambition. This was our fight. Our only fight. Much later in life I would learn the unimportance and silliness of this argument. How silly it is to define ones-self solely by the career path chosen. By how you make your money. This is so little of who you truly are. David was happy to work for money in any way he could but his life—his being was not tied to it, as mine was, as a Nurse. His LIFE was home, and other interests, reading, and enjoying the variety of life on earth and the world and all that was in it. But I would learn much later this valuable lesson of how much of what you think is you, is not you at all. Much of what you do for a “living” is completely different and apart from what you do for a LIFE.

It was a couple days after Denise made her call that I finally spoke to David. There was a lot of weeping and apologies on my side. He did not need them, nor did he want them, but I gave them anyway. Soon, we were having frequent phone calls filled with memories, and of course he insisted on coming to see me. He was thousands of miles away, and had a few problems to correct to make the journey, but he finally arrived a couple weeks ago, and has taken some of the workload off Denise in my care, and has been a great comfort to me. He never remarried either. I could feel John close to me, knowing that I needed this. Some peace regarding John’s sons finally settled that grief in my soul. Some men do not grow up to be anything like their father, but something completely alien. But there are honorable men, who grow into it of their own volition and sometimes despite overwhelming odds or because of them.

I have enjoyed this visit with an old and very dear friend. A man I loved enough to marry. A man I still love, though granted not in the same way I loved him while I was his wife. We are still great friends. There has been a lot of laughter in my home these past weeks, even though my physical condition has been rapidly deteriorating. There has been much pain, pain that I cannot control and happily old pains healed.

There is love in my house. And that can only do me good.

 

The Neglected Garden

In Deep Thoughts, Real Life on May 3, 2016 at 5:09 am

 

Usually an early Spring like this one has been would have been a source of great joy to me. I would be out everyday, working and cleaning up the garden, watching things come up and bloom. Clearing paths, watching the wildlife venture out from hiding places, and sitting on the patio in complete awe of God’s creation.

Wonderwood is a perennial garden. Everything comes up from the ground and there is very little that I must plant, unless I have made plans for a few annuals here and there to give me color, and perhaps some spring bulbs. There is actually a bag of spring bulbs hanging in my coat closet now, the last ones that my beloved John bought me before he died. Oriental Lilies. On sale at the end of the season last year that I scarfed up for planting this year.

But this year I am too weak. I cannot lift myself from the ground if I were to sit and work the beds, so I watch as my flowers come up among leaf clutter and weeds. Their beauty is not marred that much by it,  but there is a sadness to it for me. I remember when my grandmother became too weak to work her garden, it depressed her terribly.  I was still driving then, and my brother Paul and I would drive to Shawnee every week to weed and plant her annuals, and water her beds. Then all she had to do was putter around. It made her happy again, and she told me her neighbor told her that her garden looked the best it had ever been.

Wonderwood was my attempt to bring a feeling of the wild beauty of our family’s traditional gathering spot, Platt National Park in Sulphur, Oklahoma.  (Now the Chickasaw National Recreation Area) to my back yard. I had other plans as well, big ones, to make it look even more like Platt, I wanted to build a miniature facsimile of one of the picnic pavilions. John and I discussed it often.

Now I sit and look out the window and make plans for things that I want to be dug up and moved to Mysi’s garden, or my sister’s.  Over the years I have made plans for this inevitability. It took me years to separate out specific flowers and shrubs so that upon my death she might go to one bed and pull the whole thing and transplant it to her own home. The one in front has all the deep purple Iris, Tulips, and 12 white Peonies just waiting for her shovel.

Denise came over and dug up 4 trees. I hope they all live, and she will have some nice shade and a reminder of me as she gazes out the window in years to come. So far, so good.

By now I would have had some annuals in pots, the porch would have most of my indoor plants that have been wintered indoors in their usual places, and I would have washed it down numerous times so it would be a pleasant place to sit out. In the back, the patio would have been cleaned up twice, and more pots planted. The ground cover from the patio to the back of the yard would have been whacked down to ready itself for growth. It never got this initial trim so the Back garden is a wild woodland. forest. But interestingly, it does look more and more like I transplanted a small plot of land from Sulphur to my backyard.

 

And in its own way, at this time, that is somehow perfect.

 

 

Sweet Dreams are Made of This

In Faith, Real Life on May 2, 2016 at 7:04 am

20 years of study, more than 170 books on religion and philosophy read, 5 years of inquiry, 4 years of writing letters and phone calls to local priests, 7 letters to the Pope, hundreds of thousands of prayers said, hundreds of Masses attended without benefit of sacrament,  A yearning in my soul that could not be quenched,  Knowing that my time was growing shorter and shorter, Trials of faith that sent me into despondency and despair. Traveling through a 2 year Dark Night of the Soul without any spiritual adviser, Continually returning to call out  to Jesus: I trust in you. Thy will be done.

And finally April 30, 2016. I can say: I am Catholic.  More than that, I had my first communion. This was always my goal. The altar and the Eucharist.  To partake of the true body and blood of my savior.

 

If you begin an earnest and honest study of the Catholic Church there is a time when you realize that transubstantiation is true. Once your mind and heart and spirit accepts this reality, then nothing can keep you from that altar.  The hunger in your soul is almost unbearable.

Because I was not catholic however, I could not take communion in the Catholic church. So I set about to join. As I pointed out in previous posts, I had already overcome many barriers in doctrine through my studies.  Becoming catholic requires going to catechism classes called RCIA, but because of my own personal situation this was almost impossible for me to do. I attempted several times but either they were held at night when the bus was not running ( I even learned to ride the bus to try to accomplish this.) Or they were in places where the bus did not run.

My journey to it was just more difficult than most because of the logistics of my life. First, I have been sick with heart problems for many years, I am an agoraphobic and do not like to be around a lot of people, it gives me panic attacks. I do not drive and do not have ready access to a vehicle. This journey was also very private to me. My faith always has been. I am a quiet contemplative prayer person when it comes to my spiritual life. I also did not personally know one person who was Catholic. That is, until my sister married one.  I had a couple conversations with him about it, but they were casual really, but I digress.

Before I became Catholic, I would spend some hours in Eucharistic Adoration. Most especially in the Chapel of the Holy Innocents in prayer for women considering abortion. It was to me at least a special time to spend with Jesus, without partaking of communion itself.  I could also get there by bus. (2 hour ride to and from)

Then the cancer came with its prognosis of a fairly rapid death, and my situation, to me seemed dire. No one else did, it seemed. I continued to call write  and contact people. We puzzled over the lack of action.   I told my sister that this may be something that just won’t happen. I may have to resign myself to this fact.  No one from the powers that be were acting on it.  I wrote one last letter to the Pope. The priest from the local church came to my house 3 times but then he forgot me one day and did not show up, nor did he tell me he wasn’t coming, and I got a little testy with him and he blew me off entirely. The nun the pope sent me got testy with me and then left town for Rome.

Then the priest called. I was shocked.  He said he would receive me on Pentecost.  I said I would attempt to live that long, but in truth, I am never even certain I will wake up the next day, since the tumors are now pressing on my spinal cord and may click off my on switch at any time. He moved the day to the following Saturday, which was April 30.

It was simple, and my sister, her husband and a very old and dear friend Mary Kay stood with me as sponsors.  They were all in tears, especially my sister, who had listened to my own weeping in despair and knew my innermost thoughts and prayers. I was in a daze. And then I was the happiest person on the face of the planet.

I am Catholic.

I know because God told me, that the body of Christ in the Eucharist will strengthen me for my painful journey ahead of me.  The struggle and the frustration and the trials to arrive at the altar were also part of my strengthening for this journey.  God has his plan, and it is always perfect.

 

 

 

 

 

 

Sometimes the Choice is Not to Fight

In Deep Thoughts, Faith, Real Life on April 20, 2016 at 5:50 pm

 

January 8, 2016 was the day I got the news I was dying.  Of course everyone is dying. Most people do just do not accept or acknowledge this fact. We are all on our way to the grave. We just get there at different times and in various ways. But we all arrive at this destination eventually. So far, over the course of human history this is the one indisputable fact: Humanity has a 100% mortality rate.

I have always been pretty realistic about death, especially my own, and even to many seemed somewhat morbid with my obsession about it. I made many decisions about my own death while I was still in my 20’s. Pre-paid for my funeral while I was in my 30’s. Had my will in place before I was 40, Talked openly with the people I wanted to be in charge of things once I was incapacitated regarding my advanced directives and continue to discuss those things as the state of my health deteriorates currently.   I believe people who ignore these basic things are foolish. As a nurse I have seen many people die, and it is not pretty when all these things are left undone.  My niece Mysi, since she was 4 years old, (She is 37 now) has known that she will be the one to “take care of me” when I am old. I have no children. I was not sure what marital status I would be in, and in truth it is probably better in my opinion if someone other than a spouse is an executor of end of life matters.  But this blog is not about all that, in fact I may have already covered all this previously, but the cancer also makes my short term memory boggled and I now have a tendency to repeat myself. Some would say this is just old age–so be it.

But what I really wanted to talk about is the reaction of other people to my cancer. There seems to be a prevalent thought that everyone who has cancer is in some noble battle to beat the cancer and live. If you are not clutching white knuckled to every minute of life you can steal back from it, or following every single avenue of treatment then you are somehow failing at the whole “cancer thing”.

I was not given this kind of choice. They could not operate and remove them. There is no chemo that can find and reach them.  They could diminish the swelling and perhaps with full brain radiation reduce a couple of the small ones and give me back some function.  Everything from this point on is palliative.  From the get-go my diagnosis is  FATAL. The median survival is 6 months.  1 year at best.  In other words, most people are dead at 6 months. Some people live for a year.  This is Stage 4 brain cancer with large tumors in my brain growing rapidly. Because I am a Christian, my initial response was somewhat surprising I suppose to those who have not given their lives over to Jesus Christ and trust that God is ultimately in control of everything in one’s life. I was going home. I was closer to the goal that is the goal of all Christians. To meet my Lord and Savior face to face. There was joy in it. I was also called upon to suffer for the Lord. This too, to most would seem a ludicrous thing to see as a blessing but it is not. Jesus suffered for the Love of me. I can now suffer for love of Him, and to him give all the glory. This was a gift.

So my thoughts turned immediately to “How do I wish to die? How can I give this meaning, not only to me, but to others who are now in the unfortunate position of watching me die? My goal is to die with dignity, in the arms of my beloved family. To not prolong their pain and to not cling to life that would ultimately only prolong my own suffering and that of my family and friends.  All decisions I make are based on this goal.  But again, many people, for whatever reasons, do not accept this. They continue to ask questions of me based on THEIR goals or expectations of how I should be treating this. I am daily given some new advice on how I can cure myself. How I can grab a little more time on earth.

This is NOT my goal. That fight is not mine. I want only peace and strength for the fight I am in, which is to die with dignity and peace and to go to heaven. Adding more time is the equivalent of extending my time of suffering, and it is ludicrous to me to spend the short time I have fighting for extra days of suffering. Spending precious days hunting down ways to extend my time has nothing to do with where I am or wish to be.  My most fervent prayer is for it to be soon and let me not linger long.  Let my love for God shine through to others in the end, and let my family be at peace when I am gone.  Knowing what the battle truly is helps. I am not “giving up”, I just know the battle I am in, and accept it.  And…I have my ticket to another and better place. I hope to see you there someday.

 

 

 

 

 

Unsafe At Any Speed

In Real Life on March 14, 2016 at 11:02 am

One thing recently that I have found very handy are these little carts at the grocery. Not having good balance anymore and my stamina waning for long walks through the grocers, I have taken my place in the army of folks who drive through the store on motorized carts.

My first go-round on one of these has now become a deliciously hilarious memory for my sister Denise and I. You see I have not driven ANY VEHICLE in more than 14 years. Not sure when I gave up driving, but it was after I had a panic attack behind the wheel of my car while sitting at a street light behind a Ryder rental truck, and visions of the Oklahoma City Bombing filled my head and I literally could not move.  They came and pried my white knuckled fingers off the wheel and then sat with me til I regained my composure.  I resolved never to drive again. I did not think I could be trusted, and I might harm some other human being.

So I have been the passenger in vehicles for many years. A passenger who enjoys just looking at the scenery passing by. I am rarely if ever paying much attention to where I am going. I am not looking forward, I am looking side to side to see what I can see, and of course at this point in time, it is an ingrained habit.

I am now in this little motorized cart, and certainly it is not going that fast, but it is still a moving vehicle and at first, I pay attention, because I have never drove one, but it is simple enough, button forward is forward, button back is back, let go and it stops. I got this.  But then, as I feel relaxed enough, I forget I am not merely a passenger, but driving this thing,  and I am not paying that much attention to where I am going and my sister Denise is behind me trying to keep up and at the same time watching me come within inches of people and certain disaster.  Also take into consideration that I am pretty much blind on the right side due to the cancer, and must turn my head almost completely to the right to see anything on that side, since the left eye is the only eye that sees things clearly.

I am now in the aisles with the large refrigerated units with people and doors opening this way and that, looking at all the golden cheesy goodies within, and suddenly I remember I am driving just in time to come within one inch of an old man standing at one of the doors. He looks down at me like I am the devil incarnate, and my sister and I both break out laughing as I apologize profusely. He probably thought we were both nuts.

I still have to remind myself continually that I am the driver, not merely a passenger. Denise still watches me pretty closely and she reminds me as well.  There is an ornery side to me, however, that wishes I could just go nuts and run everyone down.

 

“My Boys” (And a few girls)

In Deep Thoughts, Faith, Real Life on March 6, 2016 at 6:01 am

 

I often say I am Nanny McPhee who has not yet finished her “lessons” to her charges.  This is generally said because I also am blessed with a “fang” in front. (of my own making, when I was a child, my front baby tooth fell out, (as they always do,)  only out of curiosity I explored the subsequent hole with a toothpick, and it broke off, and the piece stayed there til the new tooth came in around it, pushing the piece of toothpick out and causing the tooth to move forward and for some unknown reason, grow continually, albeit slowly. I have had to have the tooth filed on occasion over the years, but have not done it in some time so I kind of look like a combination of Nanny McPhee  and Ollie of Kukla, Fran and Ollie fame.

Not sure why I decided to go off on this particular physical flaw of mine at the beginning of this post, I guess because it has always been an embarrassment to me, I have never known what I might have looked like with straight teeth, and it is the one thing that pops out (pun intended) at anyone meeting me for the first time. I watch as people watch me talk and I see their eyes go continually to this mouth of fang, and wonder how much of what I say they are hearing or are they just mesmerized by my snaggletooth.

So yea, back to the Nanny McPhee analogy. Over the years, online I have met many young people. I play online games and of course it is very hard not to meet them if you are a gamer. I have also had numerous encounters with young people in the real world, as well.  Because of my own troubled youth, I have always felt “called” to help young people through some of their more difficult times in life, in some way if I can. I have even felt that God leads to me kids (or kids are led to me) that need special guidance or encouragement.  Most of these kids have been boys, but I have had a few girls too.  I have, however, always called them “My Boys”.  Most of them even over a course of 20+ years have kept in touch with me and though they are grown now do still come back for advice, or encouragement, or commiseration from time to time.

During this time, as they have in their time discovered I am dying, they have sent me so many kind notes and letters telling me how I changed their lives, how much I taught them, and what I meant to them during those difficult days, I have been blessed to know that I made a difference. This is such a special gift to me. I could of course hope that some word or help that I offered was of some use, but to hear from them has so touched my heart over the past couple months, and I am so very thankful.

I don’t even care that I did not get rid of my fang.

 

 

 

The Harder Parts and Small Annoyances

In Deep Thoughts, Real Life, The CANCER on February 23, 2016 at 6:47 am

 

I have always been very independent. In fact probably fiercely independent. Asking for help is just something I do not do well. Thank God I have sisters who have stepped up to care about things and do things for me without my asking, or I would be facing my worst fear—living in squalor. Of course they would never let this happen, but I have always feared it. Being a “neat” hoarder, (I do purge every so often.) I am still a collector of junk, it is just neat junk (so far).  But it is still hard for me to watch them run around and do things for me that I can no longer do.  In recent days it has become harder to “push through” the fatigue and just do things anyway, those who have been in the military know this push. So do marathon runners. You must make it up that hill, your body is saying no way but you push anyway, and get there. The fatigue is too profound now when it comes. I cannot push through it. I must give in to it, and rest. It annoys the stubborn redhead in me.

Not knowing what my tumors look like now bugs me. I know they cannot do a scan now, because the radiation on my brain only finished 2 weeks ago, but when I have some odd sensation or symptom, I wonder if the beasts are on the prowl and taking over new areas of my brain.  This next visit to the Oncology Doctor we are going to stop by medical records and get a copy of my chart and my first scans so I can have them for comparison when they finally do the next one, and so I might share them here so yall can see them. Fear of the unknown. This is the greatest fear for most human beings.

Although the steroids help the swelling in my head, and at first they were like tiny miracle pills because they kept the headaches at bay, now the side effects of them make me hate them. The swelling of my face and neck, the weakness in my upper legs, and the odd effects on my mood and appetite make me look down at the little pill with contempt. I am on 4 mg 3 times a day which is not much, and from what I have read, when things really get rocking and rolling that could be greatly increased just to keep me semi-functional. They are a necessary evil. As many great things that they do, the side effects are brutal at times.

I have had to begin to take pain pills.  I do not like to take mind altering anything. Pain pills make me feel wonky in the head. I do not enjoy this feeling.  I spent a lot of my life on mind altering drugs and gave it up and like my brain free of weird. But the headaches are creeping back, not near what they were when the brain cancer was unchecked, but they are there. Mostly spotty and dull, and my fear of the pain I did have when this whole thing started forces me to take action against them before they get out of hand. I also have more pain in my legs, most especially the left one and if I do not take a pain pill I do not walk as well because of the pain and my desire to be mobile overrides my hatred of the pain pills.

When I am alone I think too much. But I love to be alone. I have always treasured my solitude. People tucker me out. Even more so now. There is a good quote in CS Lewis’ book “A Grief Observed”:

“I find it hard to take in what anyone says. Or perhaps hard to take it in. It is so uninteresting. Yet I want others around me. I dread the moments when the house is empty. If only they would talk to each other and not to me.”

I enjoy people around, I just want them in the other room. Kind of like when our family would gather at my grandmother’s at holidays. I would find a spot in a quiet corner and just watch all the interactions of my relatives. I could pick and choose when I wanted to get up and participate in a conversation. I prefer to be the girl sitting behind the potted palm at most functions.

It is not hard for me to accept my death and I do wonder when it will come and how. I know I still have things I wish to get done, and I pray and try to trust in the Lord that they will get done. Sometimes this is very hard on the days when I am feeling weakest and death seems so close.

I fear losing functions again. Most especially my mind. I can deal with the weakness in my walking and my unsteady gait, I can deal with being clumsy and waddling when I walk, I can deal with the pain in my head and elsewhere,  But I still have things I wish to write, and when I have a short term lapse of any kind in my ability to think and write and understand, it makes me panic a bit. I am less able to tolerate and think clearly when I have too much input, so I keep the house quiet when I can.

My  prayers are for strength to get through each day. Every day I feel a bit weaker. Subtle, creeping weakness. My only strength comes from God.

“Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”  Isaiah 40:28-31

 

 

A Respite of Joy

In Real Life, Small Joys on February 4, 2016 at 4:36 am

 

My sister Denise works for a company here in town that does mortgage “checking”.  They make sure all those papers are in good order all legal and perfect. (Don’t quibble with my imperfect description here, its probably better than I describe what most folks do for a living, I have a kind of rant about what one does for money and what one does for LIFE I could insert here.)  She is at the manager level and has quite a number of people whom she supervises.

My sister Denise is an efficient, intelligent, professional and extremely competent boss. She is also a sweetie pie.  On the holidays she likes to go get decorations and come in early and decorate the office with a little holiday cheer.  This is February so of course it is Valentines.  My sister and I went to Hobby Lobby to get a few things, and while there I found some little lace hearts. I love these little hearts, so old fashioned and I cannot imagine anyone who receives one or sees one to not be swept up in a bit of nostalgia. They are small joys in life, things unchanging and still good. So I purchased 2 packages and asked my sister to put one on everyone’s desk.

Yesterday she did just that, and then she sent a memo out telling everyone that the hearts were from me, in thankfulness for their thoughts and prayers and kindnesses and understanding during this time. Of course everyone knows what Denise is going through, losing her sister to brain cancer, and most if not all have been praying for me.

After the memo, in a spontaneous and beautiful act, Each employee placed the heart up on their cubicles  so my sister could see it from her desk.

Suddenly my sister was showered with a room full of tiny lace hearts of love.