Do Not Fear, For I Am With You

I have been struggling with much grief and fear this holiday season.  My beloved family is fractured, some of my children estranged, it seems, beyond restoration.  Being a mother has been the bliss of my life.  Without them, meaning, pleasure, any sense of satisfaction, has paled, despite the outstanding nourishment of my many friends, my remarkable daughter, who is endlessly supportive and helpful, and my delightful grandchildren.  They are all wonderful and I am truly, truly grateful for their love and infinite encouragement.  But we always want what we don’t have, don’t we?   One of our great human flaws is a recurrent inability to be satisfied by the good that we do have right under our noses.  We long for what we miss.  And I miss my children with a gnawing pain that literally howls through my every waking moment.  I try to move on, I try to be accepting, but their absence is a bottomless pit of loss and pain.

Then there is the fact of the unknown.  With the spread of the cancer, it is literally a waiting game.  Waiting for the other shoe to drop.  Waiting for the inevitable day when my oncologist calls and the result of my biannual scan is no longer good news.  Fearing that the facts would be simply too hard to face, I have never asked or researched what exactly my prognosis is.  Last month I finally screwed up the courage and looked it up.  Breast cancer which has spread to the liver has a projection of three to five years from diagnosis.  I know it could be worse.  But I am greedy, another very human flaw.  I want so much more time.  I am already a year down.  I am sad and I am scared.

My faith has been shaken.  Yet another flaw.  I am the first one to admit, I am all too human and all too flawed.  But it has been awfully hard to remain reassured by the spiritual when the corporal is so spectacularly challenging.   Loss upon loss upon loss has worn me down.  The basest, most immature part of me cries out, haven’t I had enough already?!?  I know intellectually that life is just like that.  It doesn’t matter if you have tried to be a good person, tried to do the right things.  Good intentions + going to church + doing the best you can = health, happiness and success, right?  But there is no formula, no equation.  Stuff just happens.  

I have never believed God causes bad things to happen to us, I do not believe He visits disasters upon us.  I could not believe in a vindictive, punishing deity.  But lately I have found it is difficult to believe in any deity at all. 

I have received many Christmas cards this year from the delightful people I am surrounded by.  One card was from someone who is particularly special to me.  The day it arrived was an especially busy one.  Before I could open it, I was interrupted and set it aside.  Four days later, when I went to open it and reply, it was nowhere to be found.  I felt sick.  I turned every room upside down.  Because my mobility is so limited, there are not too many places I could have lost it in.  I went through every box and basket, every surface.  Nothing.  I chastised myself over and over for being so careless, so disorganized, so stupid, so thoughtless, on and on.  I automatically invoked Saint Anthony, every Catholic’s resource for lost things.  But I didn’t really believe a word of it.                                                                                                                                  

After another fruitless round of searching I collapsed in my recliner, utterly exhausted and discouraged.  I’ll just rest for five minutes, I thought, and then I will look again.  It must be stuck in something else.  I’ll turn out every catalog, every book I have laid my hands on in the past year, every container.  As I leaned my head back in the chair I noticed a small white envelope lying face down on the corner of my chairside table.  This is a tiny table, with barely enough room for my laptop.  I had searched for card on the table easily ten times.  I had picked the laptop up each time.  There had been no card.  It wasn’t there.  But it was now.  Perched on the edge, bright white, unmissable.  

I burst into tears.  I don’t ask for signs, I never have, even when my faith was at its strongest, I never felt comfortable testing God, demanding things.  It felt disrespectful and disloyal.  But I believed at that moment, with the inexplicable appearance of a card I had been searching for over hours, God had sent me a sign.  He had sent me a message: do not fear, I am with you.

After I had children, I struggled deeply with the concept of putting God before else, as demanded in the Bible.  How could I put anything before my beloved children?  How could I?  It was impossible, nothing meant more to me than my children, not even God.  I always felt guilty about that and even slightly fearful.  How much of a sin was it?  Was I dooming myself to eternal damnation because I was putting mortal beings before the Lord?  I decided it didn’t matter.  I loved my children more than life itself and if God didn’t understand that, oh well.

But here I was, facing Christmas Eve alone, the night we traditionally had come together as a family and celebrated the holiday.  The night I cherished as a representation of everything I loved most in the world, the night I had the opportunity, shallow though it was, to tangibly demonstrate my love for them by giving them things I thought would make them happy.  The sadness of being by myself, of knowing that they were deliberately choosing to exclude me from their lives when I needed them the most, was overwhelming.  I had laughed in God’s face and told Him He meant less to me than these people who were wounding me so deeply.  And He was saying, I am here anyway.

Some may scoff at what appears to be my fanciful superstition.  Some may say say that the card had been there all along and I just missed it.  Some may argue there is a perfectly logic explanation for missing that glaring white envelope all those hours.  And I might agree with all of them on some level.  But I am making a choice.  I am choosing to not be miserable.  I am choosing to be reminded that I am not alone.  I am choosing to not be afraid.  I am gratefully, humbly choosing to accept the gift of God’s love and comfort.

Isaiah 41:10

10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

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A Vineyard of Whine

I lay here in the semi-darkness, in a shabby, aged, not particularly clean hospital room.  It is the middle of the night.  Although I can hear the sweet sound of rain that I love, the bed is lumpy and hard.  I've been moved up from the ER, where I had spent many miserable hours, feeling so, so sick. My roommate snores. Am I ever going to sleep in the same room with anyone who does not snore, for Pete's Sake?!?! Apparently this room is across from the staff room.  About a half a dozen voices chatter cheerfully in Tagalog.  A couple of residents earnestly discuss their futures, marriage and vacations.  And I still, after 8 years of MS and a previous lifetime of ridiculous good health, cannot believe I am here.

I started feeling worse than usual a few days ago.  I was super weak and had the chills.  I just couldn't get warm.  My poor, lymphoma-ruined legs could not swing up onto my bed.  The pain level was through the roof.  The area being radiated every day was beginning to feel sore and a little cluster of blisters had already developed on my neck.  My restless leg syndrome, usually so repsonsive to the medication, was resisting for a change, with that awful sensation extending up to to my arms.  And, my personal, most humiliating favorite, incontinence, was complete.  Ahh, the wonderful world of multiple sclerosis.  I was changing my clothes dozens of times a day.  And, as shaky and wobbly as I was, that was no easy feat.  Finally, this morning, after a nightmarish night of unsuccessfully trying to make it to the bathroom on time over 20 times (yes, an unbelievable 20+ times), I curled up in bed and wept.  I gripped my rosary and murmured the words I have known for almost my entire life.  But in my head I just kept begging God to end this horror, the constant pain, the mortifying dependence, the fear, the worry.  Then I slept for about twenty minutes.  A record.

When I woke up Mary Kate was standing over me looking horrified.  "You HAVE to go to the hospital!" she demanded.  It only took me seconds to agree.  She called the ambulance, her husband went out to wait for it and I just sat in misery.  I was escorted by two kind EMT's and two professional, serious paramedics. They found my blood pressure was 200/110, which won me a free, speedy trip to the ER. And so here I am.

I felt like the dog's dinner. They started me off with a huge dose of IV Solumedrol.  Slapped monitors on every inch of skin.  And I could not get comfortable for even five minutes because the whole bathroom thing was hanging over my head. I had no idea what the plan was, but at least I had a commode next to my bed.  And, while the setting here is pretty gross, scruffy and neglected, every single staff member has been incredibly cheerful, sympathetic and helpful.  They offered things before I would even think of them.  They offered to do things before I knew I needed them.  It is indeed the little things that make a difference, but actually these acts of patience and kindness were huge.

The plan now is to do an MRI of the brain and spine.  This could be an MS exacerbation, a pseudo-exacerbation caused by a virus (which ramps up MS symptoms but is not a true relapse) or, so wonderful to hear, further metastasis of the breast cancer.

Two lovely, kind ladies just stopped in my room, volunteers from the hospital's ministry program.  I am having such a hard time not being sad and scared, but in the few minutes we chatted and prayed,
these women were truly inspirational.  They were pleasant, down to earth and simply beautiful in so many ways.  Every encouraging word they said about not being afraid really hit home.  I still have to work on it, but God sends His light to me through people like this and my wonderful, generous friends, old and new.

I am counting on healing, hoping against hope I will be healed.  But if I am not, I pray for acceptance and grace, for courage and dignity.









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From the Deep End

It has been a rough couple of months.  And, as usual, my unhealthy coping mechanism is going to ground.

But writing this blog has been one of the most fun and rewarding things I have ever done and is definitely something I am not giving up on.  I have been jotting down a few ideas for posts and as I feel better I will work them up and get them on line.

I had the surgery to remove the malignant tumor from my breast last week and followed up with my surgeon yesterday.  I cannot say enough good things about her.  The first surgeon I saw had me frantic with fear due to my complicated medical history.  When I met with Dr. C. for a second opinion, her down to earth, direct manner was instantly reassuring.  She was frank about concerns over potential problems, but expressed confidence in managing them.   At the hospital for the surgery, I continued to be just bowled over by her easy going presence.  She was relaxed and cheerful and hands on, no chore was beneath her.  She even helped out pushing my bed to the OR, rather than waiting for the one whose job it was.  You just couldn’t help feeling assured by her all-around niceness.  I actually asked her if she had been a nurse before she was a physician, she was so unassuming, the antithesis of your usual I-Am-God surgeon.   She laughed and ascribed it to her upbringing and OCD.  More reason to love her.  She makes you want to be her best friend.  Or maybe marry her.

Not to be left out, my anesthesiologist was outstanding as well.  His clinical expertise combined with incredible compassion truly helped in easing my considerable fear of the anesthesia, in light of my lung complications.

Anyway, the follow up appointment was a mixed bag.  She got the whole tumor, which turned out to be the size of an egg.  While there were cancer cells in the margins, she believes she got it all out.  That was the good news.  I was surprised and dismayed to learn that after discussing my case at a meeting this week, the team felt chemotherapy could be necessary.  But with all my health problems, I might not be well enough to withstand it.  That was upsetting on both levels.  Then there is the radiation, which is the usual protocol after a lumpectomy.  I was really keeping any thought about the whole process at the back of my mind, it was just too much to take in before the surgery.  But now that it is imminent, the reality of what a trial it will be began to hit home.  Radiation is done five days a week, Monday to Friday, for six and a half weeks.  With my mobility issues, this is going to be tough.  It will be a challenge getting me there, it will be a challenge getting me on the table and it will be a challenge for me to lay on my back for a prolonged period of time.  As with everything else in my life, this will be really complicated.

Then I have the gall bladder issue.  I still have a biliary drain in, a constant source of discomfort and worry about potential infection.  But we dare not attempt the surgery, because God forbid I have complications, it will delay the breast cancer treatment again, as it has been delayed over the past months by all my health crises.

Sigh.

I am working at staying positive.  For one thing, I have a group of incredible, wonderful, loving friends behind me.  I am inundated by cards, phone calls, visits and well-wishing on Facebook. I am humbled by everyone’s faithfulness.   I feel as though I owe it to them to keep upbeat.  If they have confidence in me, who am I to be gloomy?

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When Bad Things Keep Happening to Sort of Good People

Perhaps I am stretching it by putting myself in the Good People category.  I know so, so many people who are far stronger, braver, charitable and admirable than I am.  That is why I qualified it a bit, I am sort of good.  Pretty good.  Relatively good.   I do try.  However, those Bad Things, they just keep on a-comin’.

I found a lump in my breast several months ago, but with all my health problems and hospitalizations, following up on it took a back seat.  I finally had a biopsy last week and within a few days the results came back.  I have ductal carcinoma in situ, or, in lay terms, breast cancer.  It is the most common type and the chances are high for a complete cure after surgery, chemo and radiation. 

The problem is that the treatment protocol takes a tremendous toll on the healthiest of people.  And me?  I am not the healthiest of people.  Multiple sclerosis has sucked all the ‘life’ out of my life.  Secondary to MS I have developed crippling lymphedema in my legs, causing relentless, excruciating pain and severely limiting my ability to take more than a few steps, essentially confining me to a wheelchair and to my home.  Getting out of the house is simply too darn hard. 

Limited mobility means no exercise.  I carry the genes of Irish peasants who survived an Gorta Mór (the Great Potato Famine).  So no exercise means horrific, depressing weight gain by just sitting here and breathing.  Oh, and breathing?  Yeah, that would be an issue too, as MS has caused a partial paralysis of my diaphragm which has compromised my ability to take deep breaths.  Surgery to remove the lump will require anesthesia.  There is considerable concern that my lungs would not be strong enough to recover from the anesthesia.  I might end up with a tube in my throat attached to a machine that would breathe for me for the remainder of my days.

What on earth did I do in a previous life?!?!  Holy mackerel, it must have been really, really bad.

I am trying hard to keep a positive outlook, but it is very tough.  I’m awfully scared.  On the plus side, I have a great team of health care providers who are truly skilled, concerned and compassionate.  I have found someone who might be able to help treat my lymphedema at home.  I trust my oncologist, who I will meet with on Thursday to discuss plans and realistic expectations.   My respiratory therapist has referred me to a physician who specializes in preventing post-op vents.  

My friends have rallied around me with a tornado of caring and love.  It is my children I am the most concerned about though.  I do not want them to be burdened or to watch me suffer.  I am praying for them, that they find solace in each other and that we can be a happy family once again.

So, I soldier on.  I believe things always work out one way or another.  They may not work out the way you want or the way you intended, but they do work out.  I have always rolled with the punches, dusting myself off and reinventing myself as I’ve needed to.  Even when I didn’t want to.  I am not ready for it, but ready or not, it is time for a new adventure.

Wish me luck.

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Dispatch from Room 557

Rehab is a world unto itself.

I think it is the lack of privacy that is getting to me more than anything.  There is not one aspect of your existence that is not scrutinized and made fodder for casual discussion amongst the staff.  What is sacrosanct for you is routine for them.  And that is, after all, their job.  But because there is no Cone of Silence, you hear more about yourself and your co-inhabitants than you ever would have wanted to know in a million years.  I am horrified to hear my elderly roommate reporting intimate details about my body functions to her friends and relatives.  I can’t imagine they are all that thrilled either.  At least those who are under 80 and not demented.

All rooms are doubles and, from the sound of it, no match is an ideal one.  Everyone has an issue and I am no exception.  Sharing a room with a seriously ill 85 year old with mild dementia is in turns humbling and exasperating.  She is truly suffering, and whimpers a good part of the day.  It makes my heart break but it is also extremely upsetting to listen to.  She is up multiple times during the night and, as a result, so am I.  The television blasts even though she is not watching it and I have to ask for it be turned off from in front of her sleeping form.  She is experiencing significant, audible gastric distress and I, apparently, am particularly susceptible to the sounds, as queasiness is becoming a permanent condition for me.  If I have to use the bathroom, it never fails that the aide has gotten her there first, which will mean a wait of at least 45 minutes while she is taken care of and washed up.  She needs help with her tray that I am too weak to give her, which means I have to sit and listen to her struggle until the staff comes in to help her.  And then there was the panic when she was apparently dreaming and called the nurse to report there was something seriously wrong with her roommate (me).  I was sitting on the edge of the bed reading as I heard this transpire out of the corner of my consciousness and an entire team had rushed in to resuscitate me before I could say a word.  They looked at me and I looked at them while she insisted there was something substantially wrong with me.  Which there clearly wasn’t.  If nothing else, it got everyone’s heart rate up a bit.

But then in the night I hear her murmuring, offering thanks and praise to Jesus in gentle little whispers.  I am chastened by her simple expressions of faith in the face of such adversity and pain.  With gratitude, I silently join in.

Physical and occupational therapy is hard work but, I am pleased and surprised to find, effective.  I can feel some strength creeping back, although stamina is slower in returning.  The staff is no-nonsense but incredibly kind at the same time.  My fellow patients are a fascinating cross-section, but each individual is a study in courage and accomplishment.  Some have had strokes, some are simply weak from advanced age, some are recuperating from surgery.  It is awe-inspiring to see how hard they are working and how determined they are.  There are some exceptions, those who are frightened and confused, those who are resistant and at least one dirty old man, but most are valiantly giving it everything they have. 

There is another woman here with MS.  The first day of my admission I was cheerfully told by a few people that we would be introduced, that I would like her, that she was very nice.  Which I had no doubt of.  But it never fails to surprise me that people consider having MS to be some sort of choice or hobby that connects people who have it.  I have no more in common with someone with MS than with an average person.  If they had said they would introduce us because she was a writer too or was a movie buff or lived in Ocean Township, that would make sense, but not based on the disease we both have.  And when I see her in therapy my heart sinks.  She is very, very ill and extremely impaired cognitively and physically.  What were they thinking?

The second day I am here (hmmm, or maybe the first?; it is so easy to lose track), I am interviewed by the team neuro-psychologist.  The mini-mental exam is interesting, but not interesting enough for me to rise to the challenge.  I just cannot wrap my brain around eight (or maybe nine?) unrelated words she asks me to remember and repeat.  I ought to be embarrassed, but I just don’t care.   Considering how competitive I usually am intellectually I am astonished at myself, but it is no incentive.  I have no interest in those eight words and they just won’t stick.  We return to them maybe six or seven times before giving up.  I never do remember them all.  It is a pretty humbling experience.  But not one I am particularly upset about.  This is not a good sign.

My independence has slipped away over the past year as the lymphedema in my legs limited my mobility and my function.  I did not put up much of a fight, as I am just so weary.  It seemed as though I had hit that wall of accomplishment and was just through with everything.  Hard earned career was over and done with.  Weight gain had rendered me hideously unattractive and uncomfortable.  I no longer bothered with getting my hair and nails done.   I don’t wear jewelry anymore or wear nice clothes.  What’s the point?  Not yet 60, I could see no future.  But the therapy here has had such an impact in so short a time that I wonder, maybe I will drive again?  Maybe I will be able to get myself somewhere to meet a friend for lunch or go visit my dad?   One of the nurses (Becky, I just love her!) is chatting as she wraps my legs and says offhandedly “Miracles happen all the time, you never know.” 

Now those are eight words worth remembering.

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