OUR LADY STAR OF THE SEA

For those of you who might remember, I published a post last spring called, “OK God, I Give Up!”  To summarize briefly, I had had an epiphany of sorts at mass one Sunday.  I realized that I had been badgering God to the point that I was picturing Him with earplugs on.  That’s not a very comforting picture, especially when you realize that He truly is the only one who can do anything about my problem – this vile, repulsive, cowardly disease that is trying to kill me!  Doctors and drugs can only do so much.  After that, it’s up to The Boss. 

At that time, I had come to the conclusion that I would stop badgering, whining, and pleading and just put everything into His hands.  Not the usual “Let go and let God.”  Remember, I’m a control freak!  This was more of a deal.  I realized that only He had the power to solve my problem so I told Him I would accept whatever He chose to do about my health – but I was DONE with pleading”  In exchange, I offered to do some smaller things for Him – things I did have control over.  It actually worked very well for quite a while.  I placed all the big things in His lap and He sent me little things to do for Him.  Then the Funk set in – sent, I’m sure, by the creator of the maniacal killer inside me – the Devil!  I’m convinced that’s who invented this disease. Of course mankind helped him with our lifestyle choices, but that’s another story!

I need to begin at the beginning.  When we moved to the beach about a year and a half ago and first started going to this church, Our Lady Star of the Sea in New Smyrna Beach, one thing really annoyed me. I’ve been in many, many churches in my life and I can’t remember one that  didn’t have a huge crucifix over the main altar.  When you knelt down and looked up, that’s the first thing you would see.  It was a focal point, the central direction of your prayers.  This church had no such crucifix – well it does in the back of the church, but not where my brain is used to seeing it.  Instead it has a magnificent stained glass window showing Mary standing in a raging sea holding a staff with a brilliant star at the top.  The window faces east, so the rising sun catches the colors of the star and it is truly mesmerizing.  But, beautiful as it is, it was still a distraction to me.  I had trouble praying to Jesus when Mary was staring back at me with waves crashing around her.  Eventually I managed to gather my powers of concentration – sometimes – and pray accordingly.  But it still bugged me!  I must emphasize, however, that we LOVE everyone and everything else about this beautiful and welcoming parish. 

Last Sunday it all came together for me.  Spring must be my time for epiphanies.  I was scheduled as a Eucharist Minister that morning, so Fred and I sat in a different area of the church.  I found myself staring at eyes that I swear were staring back.  I was seeing the huge window from a slightly different angle and something struck me.  Most statues and photos of Mary show Her to be meek and gentle and generally motherly.  This window is definitely not that Mary.  This is Mary the warrior.  This is Mary the guardian, the protector – this is the Mother who will lay down Her life for Her children!  Wow!  This is who I want on my side. 

When I was in high school, Our Lady of Wisdom Academy in New York, I belonged to clubs that were dedicated to Mary, but I can’t say that I’ve ever had a very deep devotion to Her.  That’s not to say I don’t believe in Her, or pray to Her, or love and honor Her.  I just never developed that personal relationship that so many people have – my Dad, for one. He trusted Her completely and believed that She could and would do anything for him.  And She did, many times.  His trust was completely unwavering and it was definitely rewarded. 

Okay, so, consider this series of events.  We moved to New Smyrna Beach DIRECTLY across the street from Our Lady Star of the Sea.  I can look out my bedroom window, or sit on my back balcony, and see the 25+ foot stained glass window.  When the lights are on inside the church, I can see Mary holding that staff and calming the raging seas.  About 100 feet south on the church property is a grotto to, guess who – Mary.  It’s even got benches in front, beautiful flowers around it, and lights on it at night. I see it every time I go in and out of my apartment.  I’ve been there twice, to show some visitors.  Do you see the irony?  How stupid am I? 

This is the secret passage way, the back door, the private entrance I’ve been looking for.  I’ve prayed to so many saints and angels.  I haunted Jesus so often I began to picture Him wearing ear plugs to blot out my begging and pleading. But I never thought of His Mother!!!  She’s God’s mother for all eternity!  Who doesn’t listen to His Mother??? Well, maybe that’s not a valid question.  No one ever listens to his mother all the time – but I’ll bet Jesus does!!! Who better to have on my side? 

I’m just in the processing stage right now.  I’ve acknowledged that we were obviously put here in this parish, in this location, in this apartment for a reason.  I’ve acknowledged that Mary is trying to get my attention – and this time she definitely has.  I’m embarrassed that it took me so long to realize it.  I was so distracted by my epiphany on Sunday that I miscounted something I should have been paying attention to on the altar.  So, when I got up there to serve, my miscount caused a slight bobble.  Hopefully it wasn’t too noticeable.  Oh well, Mary definitely captured my full attention and got Her point across. 

I’ve begun thinking about Her and reading a lot of old prayer cards and novenas, trying to see the warrior in the gentle woman I’ve always pictured.  It will take time, I’m sure – and I’m not planning on trying to make any deals with Her.  After all, I’m a mother too and deals never worked very well with me.  Now that I think of it, as a mother I’ve had to show many sides.  I’ve been gentle, loving, not so much meek, but generally mothering to my children (I hope).  But I also remember times when I had to be a staunch protector and fierce warrior when it came to them.  Why wouldn’t She be the same?  And I’ll bet Her son won’t be wearing earplugs when She brings my petitions to Him!

TIP FOR THE DAY:  Sometimes we need to stop praying, and whining, and pleading and just listen.  Conversations are a two way street – especially with heaven!

WORDS OF WISDOM

  

 Susan Gubar is a distinguished emerita professor of English at Indiana University and the author of “Memoir of a Debulked Woman,” which explores her experience with ovarian cancer. She also writes a blog called “Living With Cancer” at well.blogs.nytimes.com/author/susan-gubar.   One of her recent blogs began as follows: 

“Some cancer patients adopt a “don’t ask, don’t tell” policy with their doctors. Either they are more afraid or more brave than I am. I keep on asking, though the telling sometimes jolts me.

“How long do you think these pills will work?” I ask about the experimental drug trial in which I participate.

“About six months,” my oncologist says.

“What do we do then?” I am trying not to look upset.

“There are chemo options,” she explains.

“For how long?” I persist.

“For as long as they work,” she smiles.

“My doctor would probably not volunteer such disturbing information, but she responds to my inquiries with an honesty on which I depend. Still, the conversation resembles a catechism. I have posed these queries before, heard the responses before, and been shocked by them before. She bears with me.”

I’ve done the very same thing, but in different words. I like to use euphemism “slippery slope” – as in, “Have I started sliding down the slope yet?”  So far the answer has always been a resounding “No!”  I know the slope is there and I know my medical team of angels is too honest to lie to me, so I don’t ask as frequently as I used to.  See – “don’t ask, don’t tell.”   We all have different worries and questions about the future and, in all fairness, the oncologists don’t always know the answer. And knowing me, I would definitely read much more into the “I really don’t have an answer to that” expression – probably something like you have 8 minutes to live! I have such an annoyingly vivid imagination. 

I used to sleep through the night – most nights anyway since I no longer have little ones calling me to exorcise the ghosts from under their beds – and no bigger ones testing their curfews.  Now I seem to have an inner alarm that goes off about 3:00 AM.  That’s about the time when the trailers of future blockbusters run through my head.  All the unasked questions, all the gruesome rumors I’ve heard but am afraid to Google (in case they might be true), all the alarming coming attractions that may or may not ever be seen.  

 These thoughts try to break through during the daytime also, but there’s always something to chase them away.  I get up and look at the ever-changing ocean and all my beautiful and entertaining birds.  Sometimes I just put a load of laundry in or plan dinner – something mundane to chase away the goblins.  But in the pitch black of the early morning hours, distractions are more difficult to find.  Somehow my husband seems to have a sixth sense and will usually respond with one arm thrown across me and a gentle squeeze, letting me know he’s there with me and for me – even if he can’t see the film playing in my head! 

Since my current goal is to drag myself out of that pit of quicksand (and midnight showings of my personal horror movies) on my way to the mythical Phoenix, I have been searching for something to grasp – something to latch onto and lift me up.  For the past 4 years and 11 months since my diagnosis, I have tried hundreds of coping mechanisms.  Novenas to St. Anthony and St. Jude, and a few other saints I’d never heard of before, Yoga classes, meditation, exercise, relaxation, visualization, manicures & pedicures (don’t laugh), less wine, more wine, comedy movies. You name it and I’ve probably tried it (not the macrobiotic route though).  Anything that involves giving up my wine would never work.  After all, Quality of Life is important, too!

Yesterday, looking for a distraction, I decided to sort and file a stack of bills, receipts, and general “whatever.”  I came across a paper I had printed quite a while ago.  It was a mixture of sayings and short prayers that I had accumulated from a bunch of different sources.  They had so moved me at the time that I put them all on one piece of paper intending to use it every day to keep me on track.  Like so many other things in my life, it wound up at the bottom of a pile of other good intentions.  Some of these are from a very dear friend of mine who tries her very best to keep me healthy, happy, and positive. I would like to share them with you.  Whether you’re fighting cancer, or living with it, or just trying to get through each day, I hope you will find something here that will make the journey more tranquil and serene!  Just reading these has already begun to work for me!  Thank you Lois!!!

• “If there is anyone or anything that has hurt you in the past – forgive and release it.    If you have hurt anyone or anything in the past, forgive yourself and release it.  If you have hurt yourself in the past, forgive yourself and release it.”
• Stay connected to yourself!

• Notice how you are feeling but do not judge your feelings!

• Keep finding that place of hope within yourself!

• Focus less on waiting and on what may happen and live in the present!

• Take time out twice a day to find that place of peace within yourself.  Find oneness with the Divine.

TIP FOR THE DAY:

Today may there be peace within.  May you trust that you are exactly where you are meant to be.  May you not forget the infinite possibilities that are born of faith in yourself and others.  May you use the gifts that you have received and pass on the love that has been given to you.  May you be content with yourself just the way you are.  Let this knowledge settle into your bones, and allow your soul the freedom to sing, dance, praise, and love.  It is there for each and every one of us.  God Bless!

PHOENIX and The FUNK

It’s been so long since I’ve actually sat down to write.  It used to be so easy – lately it just weighs on my mind as an unpleasant chore that I must do – like cleaning out the pantry.  I think I need to dust all the cobwebs from my brain!  Even though I know it’s only a temporary “Funk” - I hate this feeling!  Writers often get a kink in their train of thought, or an impromptu beaver dam in their word stream. I seem to have run smack into a pit of quicksand.  

Maybe if I just try to tell you what’s been going on in my life – and in my brain – these past few weeks, we’ll both understand this “Funk.” 

The last treatment I wrote about was #2.  All went very much according to schedule.  The side effects eased off around day 7 and I had 2 weeks of relative normalcy.  My labs were good and I seemed to be pretty stable.  Notice, though, that I didn’t write during this “good” time.  I think the quicksand was beginning to surround me but I hadn’t realized it yet. 

Time for Treatment #3 – again all went well, for the first week.  I did seem to have a little more shortness of breath and a little more fatigue, but chemo drugs are cumulative and so are their side effects.  I was exhausted all the time and my usual 7 days of YUK turned into 2 weeks – then the labs began to slide.  Between unusual nausea and the big “D,” I was getting dehydrated.  My hemoglobin had dropped significantly and my platelets were a third of what they had been a week before.  Thanks to the quick thinking and fast work of one of my special guardian angels,  I suddenly found myself on the receiving end of 2 units of blood.  This wasn’t my first transfusion in the past 4 ½ years, but for some reason it took me by surprise and made me a little uncomfortable. 

Later that day, I had my scheduled appointment with my oncologist.  The cancer antigen numbers were going down and the aggressive cancer growth of February had receded significantly.  These were very good signs and I was grateful for them, but there were things on my mind that I couldn’t shake.  He asked if I wanted to go on with the next 3 treatments and I said, “Of course!”  But something was nagging at me. 

Two days later I woke up to – guess what??? - shingles!  This was more than a little unexpected since  I had been vaccinated for the shingles last year.  I knew I was a prime candidate – childhood chickenpox, a lifelong history of fever blisters, and a stress level that was approaching nuclear magnitude.  I thought I had taken care of that threat.  Thankfully I recognized them and contacted my guardian angel nurses who immediately ordered the appropriate medications.  My next treatment, however, was cancelled.  Chemo and shingles, even small patches of them, do not play well together.

Simultaneously, my husband was dealing with a bout of bursitis in his hip.  A very cautious and observant orthopedic surgeon picked up a shadow on one of his x-rays and strongly suggested that we pursue it.  Next followed a CT scan, which showed a bone island – most likely benign, but best to be cautious, especially with his history of prostate cancer.  Then came the Full Body Bone Scan – results of which were guaranteed by the hospital radiology department within 24 hours.  Yeah, sure!  6 anxious, uneasy, jumpy days later the phone rang.  My husband’s guardian angel nurse (he has a really great one named “D”) had come in early that morning, seen the report on the fax, and called before we left for my Treatment #4.  She knew it would make our day – All was fine!!! Thank God!!!

So, last Tuesday I had #4 – but I know things are changing.  I no longer believe that I can “control” everything, which really ticks me off!  The side effects now seem to pop up whenever and wherever they please.  I no longer believe that on Sunday of week 1, the worst has passed.  That’s been proven very untrue.  I no longer believe that each day for the next 2+ weeks will get better and better.  While the drugs are building up in my system and wreaking their havoc – plus inflicting carnage on my live-in homicidal cancer maniac – I have no idea what will come next. 

The true irony of this is that friends and family and neighbors keep telling me how wonderful I look.  There are still many days that I feel absolutely wonderful.  What I don’t understand is how my body can be such a liar.  Three times now, during remissions, while I was feeling perfectly fine – or as fine as could be expected after numerous surgeries and 24+ chemotherapy treatments – my doctor has informed me that a recurrence has begun.  So while I was going about my business of getting well and healthy – or so I thought – blood tests and scans showed that my resident cancer was still out to kill me. 

 This session at the keyboard seems to have been very therapeutic for me.  I may have discovered the cause of my “Funk.”  If  I can’t trust my own body any longer, I’m not sure what to think or feel.  I’ve been fighting so long and all the while giving sideways glances at the calendar.  I know the projected life expectancy of someone with my Stage of Ovarian Cancer and I see the days and    months slipping away.  My brain knows that nothing is carved in stone – miracles happen every day.  I just have to get my heart and soul on board.  I need to climb out of my self-inflicted pit of quicksand (and self-pity) and start climbing that mountain called “Living With Cancer.”  Funny thing is that I thought I was living it all along. Not only has my body been lying to me, so has my brain.  Okay, that’s enough then!  I’m starting The Climb!  Stay tuned for the re-birth of Positive Thinking.  

 

The Phoenix will rise again to live, laugh, and survive!

2 DOWN AND 4 TO GO!!!

Hi everyone,

I thought I would give you an update on Treatment #2 of 6 (hopefully). This time we were scheduled at 9:00 AM which is absolutely fantastic.  It doesn’t seem like such a good idea when the alarm goes off at 7:00 and I’m NOT an early morning person!  The fantastic part comes in when we get there and I’m one of the first to be seated in the chemo room.  This means I get my fluids almost immediately followed in precise sequence by visits from the pharmacist and nurses wearing protective gowns and masks and bearing bags of very toxic drugs with scary sounding names.  (Really, I got up at 7:00 for this???  Yes, and I will do it again in 2 weeks, gladly! ) The entire process usually takes about 6 hours – when you get there at 9:00.  If you’re scheduled at 10:00 or 10:30, you find yourself in the second wave of patients and possibly caught in a domino effect which can keep you there until well after 5:00PM.  The staff are all perfectionists – thank God – so everything is checked and double-checked for patient safety.  If one patient’s chart isn’t readily available, or a medication order isn’t quite clear, the entire process slows down.  Now you see why being scheduled early has its perks. 

The day went very well and we were on our way home at 3:00PM.  I was feeling great.  Typically, I would have eaten a normal dinner – had a glass or two of wine – maybe some dessert and gone to bed.  Instead, thanks to my newer and grittier journaling after the last treatment, I had ½ a glass of wine, a small bowl of chicken noodle soup and a few Wheat Thins.  I took my anti-nausea medication, Miralax, and antacid pills and went to bed early with a good book.  I slept like a baby. 

This is a good place to mention that my hair began falling out, with a vengeance, a few days before this treatment.  So, when I say I went to bed early with a good book – it was also with a nylon sleep cap on my head – reminiscent of the old Lunch Lady caps – to catch the falling hairs before they covered my pillow.  Very attractive!  So now would be the appropriate time to breathe a sigh of pity for my poor husband! 

The next morning my hair loss was so aggressive , I thought a small animal had snuck into the shower with me.  My God – I didn’t know I had that much hair to lose.  Incredibly, I still had about 1/3 of it left.  The last times I have lost my hair to different drugs, I purchased mail-order wigs but rarely wore them.  I didn’t think they looked particularly good and they were uncomfortable.  I stuck with baseball caps and sun hats.  This time, we went to a wig store and bought a wig that is comfortable and I actually like it!  I’m getting more compliments on this wig than I ever got on my own hair.  It’s a very pleasant surprise! 

The next day was my Neulasta shot at 3:40 PM.  The shots have to be administered no less than 24, nor more than 48, hours post treatment.  That night is usually when the pain begins.  The purpose of the shot is to induce your body to make white blood cells so your immune system doesn’t crash.  In the process, every joint in the body feels like a huge toothache.  Since the NSAIDS don’t stay down for me, during this phase of the post-treatment, I intended to tough it out with heating pads.  Fortunately for me, one of Dr. M’s nurses – and a dear friend – suggested a prescription painkiller.  My first reaction was, Thanks – but NO!  If the NSAIDS upset my stomach, what will a narcotic do to it?  After I had time to process the offer, I realized that having it in the house might not be a bad idea – considering the number of times I had said “Oh cr#%p, I forgot how this can hurt” over that first week. 

Again I ate very light but frequent meals that day – custard for breakfast, soup and crackers for dinner again.  I have my own special “sick soup” as I call it.  I love homemade soups and I love to make them – but when I feel sick or have no appetite or just feel the need to really baby myself, it has to be Lipton Noodle Soup – in the box.  I’m not sure that actually qualifies as “soup” but it does say “made with real chicken broth” on the box.  I don’t care what it is, it soothes my body and my soul when I really need it!  That and my Wheat Thins and I’m happy! I made it through the night with no acid reflux and using heating pads for the pain.  Not too bad! 

The next day was another story.  The pain started out pretty early and pretty harsh.  I decided to try ½ of one of the painkillers.  My logic was that, if I was going to get sick, better in the daytime than in the middle of the night.  Surprise! It stayed down and it took the edge off the pain. Again, I stayed to the light meals to offset the acid reflux at 3AM and it worked.   I took another ½ of a painkiller before bed and slept pretty well.

I’ve continued the ½ painkiller 2 or 3 times a day for the past few days.  I’m so grateful to "J" for suggesting it.  I’ve started to return to a more normal eating pattern, just not overloading my stomach.  I think that’s one of the most important things I’ve learned this time around.  Even though I may feel great the first day or two, eating “normally” catches up around Day 3 or 4.  It’s just not worth it!    It’s now Sunday and I’m past the worst of the days.  Each day for the next 2+ weeks will get better and better.

Two years ago, when I was on Doxil, I remember "J" saying that most of their patients learned to “manage” Doxil’s side effects.  Unfortunately, for me, managing anything remotely caused by Doxil was like trying to “manage” a 400 lb. octopus in a glass factory!  

This time I’m actually a little proud of myself for managing the side effects – so far!!!  If I can pass any wisdom on, it would be to try lots of different things until you find something that works for you. Just sit there and try to think what makes you feel better and what you’re doing that may be worsening your symptoms.  You may just come up with your own solution – plus it’s good exercise for our Chemo Brains!

God Bless all of you and thank you for your continuing good wishes, jokes to brighten my day, and, most important of all, your prayers.