A Not So Great Day.  It is not even a very good day.  I have found that having cancer, and being a survivor does not mean that I do not experience bad days.  I do. Often.  It is a struggle every single day, and sometimes, every single hour.
     While I remain in good health, I have so very many days that I have fears.  Fear of the unknown.  Fear of what the next blood draw will show.  Fear of being very sick.  And this fear often accompanies some physical pain.  Is it my back?  Or is it the cancer? Am I having a migraine?  Or is it the cancer?  I am so very fatigued.  Is it the cancer?  Always.  Is it the cancer?  Is it going to rear it's ugly head again?
     I struggle daily with these questions, as I am sure that all cancer patients do.  All survivors.  We are all united in this one nagging thought.  And I doubt that it will ever, ever go away.  I think that if I ever reach a point where there are no longer active cancer cells in my blood, I will still be thinking, can it come back?  Will it come back?  Will I survive if it does come back?
     I am a very faithful person and I believe without a doubt that God is with me always.  I know that one day I will enter a whole new world with no more questions.  No more pain.  No more sickness or cancer.  But what I do not know and can never know in this world, is what each new moment brings.  I try to be positive.  I have a mighty ability to assure people who ask now I am doing, to say, I am doing great.  Which I am.  But so often, the outward expression, belies what I may be thinking on the inside.  What I am feeling.  Not so assured.  Not so positive.  More than a little scared.  I fear being ill.  Being subject to medications that may have side effects that make me not want to fight.  A great fear that one day I may need a bone marrow transplant.
     My doctor assures me every time I go that I am doing well.  But how can he really know?  How can anyone really know? People often say, "you could be hit by a car tomorrow".  But I firmly believe that people with cancer have a universal fear that is very real.  It could come back.  It could kill me.
     I invite you to leave a comment about this.  I do not often share my fears.  Today I am not having such a great day.  I will go outside and enjoy the sunshine and work in my yard.  Things I haven't been able to do the past few years.  It is refreshing, new flowers and vegetables growing high with abundance.  It is a  great thing on a not so great day.  I wish you peace.

A new reality.

My life has changed so much.  It is amazing.  In 1997 I was a wife, a mother of 3 young children, had a job I loved.  Things did not change overnight.  With the many back surgeries I've endured, CSF leaks, migraines, chronic pain, and 3 years ago, Leukemia.  My world has revolved around my health.  There are very few moments that I can recall as being a good period.  There always seemed to be one crisis after another.
     But today, looking back, I believe I am now living in a new reality.  And it is not highlighted by pain.  It has been over a year since I have had to be hospitalized.  This is huge.  Before this, I don't think  there was any length of time when I was doing as well as I am now.  Even with CML I feel healthier.  I feel reconnected with life.  A good life.   I am feeling energized each morning as a new day begins.
     I still don't sleep well.  I still have pain much of the time.  I still need to take daily meds, including Gleevec, my chemo med.  I am still fatigued.  But something changed.
     When I was diagnosed with cancer my world tilted into twisting and turning shapes.  It often felt like a rainbow that was distorted and tangled.  I could feel it.  I was immersed in it.  And I am not sure when it started to straighten out and become a beautiful panorama of bright and beautiful  vibrant colors.  I feel like I have taken off dark sunglasses and can now see my world beginning again.  I feel so very blessed.  I will not know in this lifetime why I have been made to suffer, but I will know.  Some day when I am in a new world, with my family and friends.  When I bridge the gap between human life and eternal life.  I will know all that is in the mind of God.
     As my 3 month blood check gets closer, so to does the anxiety that comes with it.  But for some reason, I feel okay.  I am okay.  I will be okay.  Even if things don't continue on the positive side as they are now, I know things will come around again. 
      My new reality is this; though the seas of life wash over me, I know that my God will stand by me.   I have a new peace.
I wish you peace.
Barb

     Did you ever have one of those days when you feel both sad yet energetic?  I do not really understand it. Usually when I am sad, I do not function very well, but today, I feel that I need to be busy.  I suppose this is just my mind trying to keep my brain from thinking about the sadness I feel.  And the odd part I am not even sure why I am feeling blue.  I have a feeling writing this blog has something to do with that, and that I am getting close to my 3 month blood draw and check up.   
     The kind of Leukemia, CML, has been managed with a daily medication called Gleevec.  For the most part it has worked, keeping my white cell blood count well within the normal range, and there are very few cancer cells even showing on the test results.  When I was first diagnosed, it was hoped that I would get a complete "molecular response", which means there are no live cancer cells observed.  I have not, unfortunately had this happen. Yet.
    When I began taking Gleevec, I had some unpleasant side effects like vomiting, edema, having a hard time sleeping, yet being tired all the time.  I also have a rash that comes and goes that at times embarrasses me as it breaks out on my arms and is not so great to look at. But these are minor in contrast to the fact that taking this pill everyday keeps me healthy and alive.  I must have my blood checked every three months.
     I find that as the date draws near, I become a little anxious.  I have an anti anxiety medication that I can take, and I do.  It takes that underlying fear that threatens to come to the surface.  I think I have resolved myself to the fact that there is possibility, however small, that I could "relapse".  I am very aware how precarious our lives are, and God could decide to pluck me up to heaven sooner that I may be ready.  I don't think I am afraid of being there.  I am just now sure how I will get there.  Will there be pain?  Will I suffer?  Will I even know?  These thoughts always invade my consciousness near my blood draw date.
     This year, my anniversary is June 6th.  I have my blood drawn on the 4th.  I suppose I should not be so anxious, and I really hope that this feeling will exit for good, by I doubt that it ever well.  Cancer has a stronghold.  I may lead a completely "normal" life.  But, as I've said before, my normal, is definitely not even close to a healthy person.  My entire soul is all wrapped up in my day to day living.
     This past September I went in for my check up, and when Dr. Sood came into the room I knew almost at once that something was wrong.  He was looking at me while he said,"So, your counts are going up."  At first it didn't register.  Until he showed it to me on the computer.  The graft that keeps track of the TSH(cancer cells) was moving up.  It had gone up a little bit the previous check, but this time it was hovering very close to the  line.  The big black line on the chart that separates the "in remission" to "out of remission".  They don't really call it remission unless there are no cancer cells apparent.  As I said, I have never had this, but have hovered in the middle of the "green" line(no cancer cells)j and the black line.  I was precariously close to that line.  A thread of fear  tickled my spine.  I could feel it creep up my back and into my brain.  H mentioned things  like changing the medication, but if  the medication I was taking was becoming immune to the cancer, I may need to think about a bone marrow transplant.  
     I remember going home that day and immediately going to the Internet.  Dr. Sood had told me we would need to wait until December to test my blood again as it is a slow growing cancer, and may take awhile for the cells to multiply.  If the counts were up again in December, we would move to a new protocol.  Wait for the cells to grow?  This sounded horrible.  I would have to let leash my mutated white blood cells to grow in number before I could try another therapy.  To say I was anxious, nervous, upset.... It was crazy.  I was going crazy.  I wanted to scream.  In my head and my dreams I did scream.  I think it would have done me good to go somewhere and do just that.  Scream.  Loud.  And long.
     By the time November and Thanksgiving came, I was beside myself with worry.  I had a friend that was going through the bone marrow transplant, and we were staying in contact, as he told me of his experiences.  I didn't think I could do it.  I still don't.  There are a lot of side effects of the heavy doses of chemo and radiation to kill all the white cells, both healthy and cancerous.  The 100 days.  After receiving the donated bone marrow you begin 100 days of isolation to be free of anything that could cause infections.  Any kind of infection.  It was a tough road for him.  And he is a Marine Vet, younger and much healthy then I am.
     I asked my brothers and sisters to have their bone marrow tested to see if they would be a match should I need it.  I was apprehensive about asking.  I was thinking it would but them out of their way.  They all have jobs, and families and other obligations.  I didn't want to intrude on that.  I was surprised that they all said yes.  In fact, Karen didn't even let me finish asking when she said simply,"just tell me when and where to go."  I was humbled.  I am humbled.  On Thanksgiving, after saying Grace, I asked all that had gathered at our table to pray for me.  I had never done that before.  It seems selfish to me for some reason to ask for prayers.  I give them freely, but do not accept them so freely, somehow thinking I am unworthy.  I am still learning to accept these gifts from God.  Because that is what prayers are.  Small gifts from people who can do nothing else.
     When the day finally arrived, I had had the blood drawn a week before the appointment, I had Dan come with me.  I didn't know how I would react if it was bad news, and I would needed his support.
     Dr. Sood came into the examine room smiling. "Everything looks good."  The count had gone down.  A lot. I breathed.  He is not sure why or how this happens, but he assured me that things were good.
     June 4th will be 6 months, and I am still nervous.  I don't know if things will go up or down or stay  the same.  It is this game I must play out in my head every three months.  
     I think I just answered the question I asked when I began writing.  I don't think I am sad so much as I am anxious.  The day will come and pass and my journey will continue.  I am still surviving.  One day at a time.  This realization came to me sometime in March.  There was an aha moment.  I had been thinking of all I had been through after receiving an invitation from our local Relay for Life sponsored by the American Cancer Society to walk in the survivor lap.  Last year I walked for the first time, and I cried the entire lap of the track.  It seemed unreal.  I shouldn't be there.  The invitation  that I was holding in my hand in March, was a pivotal moment.  I was a survivor.  I am a survivor.  And I have RSVP'd and will walk proudly on June 14th.  God has given my many graces and I am thankful for every one, big or small.  If I am anxious and questioning, all I have to do is remember the grace of God that I am here, living as he would wish.  And I pray.  And I have peace.
May my peace be shared with you.'
Barb

A new day.

I woke up at 3am.  I couldn't sleep, so I came downstairs and lay down on the sofa with the window open.  The fresh air felt refreshing.  As the sun came up and the sounds of the very early birds was a calm I needed.  I put in a not so great night of sleep.  Yesterday I planted flowers.  Something I have not been able to do for many years.  I've been pulling weeds for over a week, doing a little bit at a time, as I need to be careful not to overdo.  I do not want to have back pain.  I do not want to have neck pain.  I do not want to hurt.  I find that although I am so grateful that my life seems to be moving into a new normal, I still get discouraged with my limited physical self.  God has been very good to me.  I am alive, and every beautiful morning is a new day.  A new start.  But I still have those days when for some reason or another I feel sad.  I suppose this will be a problem for the rest of my life.  I think, no I know, God understands, and I look to him to help me through these days.  I think I am feeling a bit down today because, while blogging yesterday, I wrote about my ministry, and how it has been the biggest regret of my life that I quit the one thing that truly brought me joy. And that I was able to share that joy.  I feel that I have let myself down, and my church community.
     When I made the decision that I could no longer work for a priest that had squashed my spirit, I expected that Dan would support me.  I don't think he did.  My emotions were very much at the surface.  There was a raw edge that threatened to strangle me.  I think Dan was more worried about the monthly check we would no longer receive.  In fact, when Fr. invited him to dinner a few months later, as a thank you for the monthly socials he  coordinated, I was extremely hurt that he would go. Alone.  I was not invited.  At first he said he didn't really want to go, but in the end, he went.  It felt like a slap in my face.  I felt that he should have stood by me and make it known that  Fr. had hurt me.  Dan never wants to upset the apple cart.  And I cannot count the number of times he has hurt me because he doesn't want to hurt someone else.  Whether I was right or wrong, as my husband, I expected him to defend me, as his wife, and to acknowledge the wrong that had been done to me.  I know he agrees with me to this day that what Fr. did to me was wrong.  I know this.  But it still hurts.  It felt like Fr. was trying to put a wedge between us.  He had never asked either one of us to dinner.  He never reached out in that way, and to now extend this invitation seemed a purpose driven action.  It hurt then.  It hurts now.
     Yesterday was a "social" morning.  I did not go to mass because I had taken some medication and didn't feel up to it.  Dan came home and said that Fr. had told him how good it was that I was looking so good, and that I had started coming to church again.  I am curious as to why he told Dan, and hasn't mentioned it to me on any given Sunday.  For the 4 years I have been trying to forgive and move on, some days the old hurt feelings return.  I suppose I will struggle with this for some time to come yet. 
     Struggles.  My life has been one struggle after another.  I haven't really said too much about my cancer.  I have chronic meyloid leukemia, CML.  When I started this blog, I intended to chronicle  my battle with cancer, but I seem to have meandered from that.  I have such a long history of bad health, that my  life, both physical and mental still remains complicated.
     One of those life altering moments, when your world shifts has happened to me more than once.  But no more so then when I was told I had cancer.  Things stopped moving and seemed to be a slow motion film happening outside my body.  When a roomful of nurses walked into my hospital room to break the news, I was, at first confused.  No one said I had cancer, and for a moment I didn't realize what was happening. Then one of the nurses I have known for years hugged me, with tears in her eyes, saying she had a brother, or friend, or, someone, who had leukemia and was doing fine.  As soon as she said leukemia I remember exactly that moment.  I had leukemia.  I had cancer. Blood rushed in my ears.  The people in the room seemed to freeze.  I could see them, but the world tilted and I couldn't hear anything.  Then another nurse said Dan would be there in a few minutes, and I was being discharged from the hospital but I would need to see Dr. Sood, the oncologist in his office the following day for a bone biopsy.  I remember leaving the room in wheelchair.  I had been ill, and in the hospital for over 2 weeks.  They had mentioned Leukemia, but kept telling me that there was really only a small chance that it was that.  So much for those small chances and small percentages.  Here I was again.  I could not absorb it.  It took weeks to even acknowledge it.  It.  It was a thing.  And it was inside my body, moving in my blood, and growing in my bone marrow.  I cannot say it terrified me.  I am not sure how I would describe it.
     I could not absorb the fact.  I cried.  I was sad.  I mourned.  My life would never be the same.  I had been through the "never being the same" before.  But this was different.  This was life altering.  There was before I had cancer, and there was after I had cancer.  I am living in the now I have cancer life.  It is not so bad now.
     My condition is chronic.  There is no cure, but it is treatable I was told.  I would start on a chemo medication that would fight the mutated white blood cells.  Many people have been on this medication and the survival rate is very high.  There were, however some side effects.
     Taking a pill is different then  receiving chemo intravenously.   I didn't lose my hair.  I didn't feel deathly sick.  But as my body adjusted to the medication I was often vomiting, I gained weight, and I was so very tired.  I had edema, so I now had to take Lasix.  
     In the last three years, I have gained 40 pounds.  This past February, I resolved to lose the extra weight.  While the other side effects have pretty much gone away, the water weight remains a problem, adding to the weight problem.  I began slowly, not depriving myself of any food.  As I bought smarter and ate fresher, I noticed the pounds starting to come off, and my ever present craving for sugar now seems to be satisfied with fresh fruit instead of fresh donuts (although I cheated this morning and had a donut).  I started drinking more water.
    As of today, I have lost 22 pounds.  I feel better.  Lighter.  In body and in spirit.  I think it was in March that something odd happened.  I realized I was a survivor.
     I have been thinking of myself as a "victim", questioning God all the time, wondering why all these physical things have plagued me.  And one day, I woke up and realized, that while I have endured much, I have survived.  I am a survivor.  I cannot tell you why this suddenly hit me.  It just did.  And for the past few months now, every day seems to be a joy.  My mood has, for the most part lifted from a daily complaint of the day's hurts, and aches and pains, to  praise to God for each new day.  I have more energy.  I want to do more.  God has doubly blessed me.  He decided perhaps that I needed all the challenges I have experienced, have brought me through to this feeling that I now have.  Will it last? Some days it feels like euphoria.  And I question whether it will last or not.  I still fear it will go away, and depression will once again overtake me.  It is like that big black hole is at the side of me, waiting to plunge me back into its blackness.  I am able to keep it at bay right now.  I feel, for the most part, good.  I pray that God will keep me in this good place, and help me to continue to see each new day as a fresh beginning.
     Every day is a good day.  I don't nap during the day anymore.  I don't cry as much.  God is guiding me in this new life that I have been given.  I have a peace now, that I never knew I had.  I pray you too may have this peace.
Barb

A period of respite.
     After a busy day yesterday, I realized just how far I've come in the last year.   While attending a get together with friends we made while Daniel was in high school, as I explained that I had been "out of commisson" last year, not feeling well, I couldn't really remember exactly what was wrong with me.  This morning, I still cannot say why, but last year at this time is a blur.  I was at another low point I suppose.  Today I feel as though I am reconnecting.  Plugging back into my life.  This is a good time.  It was also a good time after I had a neruo-stimulator implanted into my back to relieve the never ending back and leg pain I had been experiencing for years.  After a very scary brain trauma, and an emergency surgery, I finally had the wires implanted.

     Life was good.  I had started a business called "Rosa Cappello Hat Shoppe"  I had created  a "secret stitch"  crochet hat that became very popular.  It is actually an amusing side story.  Daniel was in 4th grade.  I had made a few of these hats for my boys, and his many boy cousins for Christmas.  On the first day back to school after Christmas vacation, Daniel wore his hat to school.  He came home and asked if I could a make a hat for his friend.  I told him I would be happy to, but his friend would have to buy the yarn.  I told him to tell his friend to either but the yarn, or I would charge $5.00 and I would give Daniel 50 cents commission.  Questions followed about  how commission works because why did I get most of the money?  So with that in mind I sent him to school the next morning thinking no further about it.
     Was I surprised when he came home from school with a list of 7 names, girls and boys, with specific color requests.  At first I laughed.  He was earning some money.  Very entrepreneur smart.  I asked him if he was sure these kids realized that they needed to pay for the hats, and he told me most of them were going to give him the money the next day.  So I waited, not sure if his salesmanship was good.
     True enough, the next day he came home with money.  So off we went to the store to buy the right yarns, and he happily collected his $3.50 and went straight to the toy department.  This could be a beneficial partnership.  And so, the next morning as I was driving him to school I told him we should name this "business".  Suggestions came from both of us.  He suggested simply, "Hats".  I suggested 'Pink"  because it was my favorite color.  He said that sounded too girlish.  Then I had a thought, I wondered how to say hat or pinkhat in Italian.  So we called Grandma, and "Rosa Cappello" was born.  Little did I know how this would become a viable business.  In no time at all, I had all three of my children, especially my daughter Jenna would help grow this business.  Daniel had ceased his interest in "selling", but by now, it was becoming a real business with a business certificate, and ID number.  Jenna, who was in high school by now was very picky about what she chose to wear kept telling me she wouldn't be caught dead in a homemade hat.  Until one day I found her trying one on in front of a mirror.  She sheepishly said, when I spotted her,"I kinda like this".  Great! A new teenage market appeared.  Things went very well for a stay at home pretty much disabled mom.  We earned enough money to make it worth keeping going.  
     I moved my way up to a spot at the back of a salon, and then to a store space.  I was thankful that things were on the mend.  I felt pretty good.  I had a business to go to work at, making my hours work for me.
   That was until one day at home when I put my head on the kitchen table and told Dan I had a headache.  I cautiously told him, it felt like that spinal headache I'd had before.  After waiting a few days with no relief I called Dr. Plunkett and explained  it to him.  He brought me into the office and we determined that it was sounding like a CSF leak headache.  Cerebral spinal fluid leak.  This was not good news for me.  It had been 3 years since that first devastating brain trauma.  I underwent CT's MRI's nuclear tracing.  None of the tests showed anything.  He suggested a Headache clinic in Michigan to see if they could find anything, and how to cope with daily headache. 
     It was a month long stay at MNHI.  Michigan Neurological Headache Institute.  It was a program where testing is done,   Pain medications are adjusted and personally adapted to each patient.  Workshops to learn to deal with issues associated with chronic pain.  And a great workshop to help others realize what a day in the life of "me" feels like.  I found myself feeling hopeless.  Each patient is assigned a specific doctor, who sees you every day and recommends possible treatments.  During my stay it was decided that I probably did not have a chronic condition, but a physical problem needing to be fixed.  My doctor recommended the country's leading CSF specialist who happened to be at Cedar Sinai in Los Angeles.  He made a call and told me they would be contacting me when I came home.  I was thinking, as we drove home from Michigan, that soon, probably meant in a month or so.
     A day after  I was home I received a phone call from a nurse at Cedar Sinai. Dr. Schivink wanted to see me, how soon could I be there.  My records had already been sent. With little resources to make a cross country trip, we discussed it, argued about it, and finally went to my parents.  We were deeply in debt, but this was a chance to relieve, yet again, chronic pain. 
     So alone, I traveled to Los Angeles, being met there by Dan's cousin Anthony who not only picked me up, but looked "after" me during my stay.  I was at a hotel close to Cedar Sinai.  I had to have a physical with a local internal medicine Dr.  I had to have X-rays, another CT scan( I could no longer have an MRI because of the metal in the stimulator). And the appointment with Dr. Schivink would be a day long event.  I have the MRI in the morning, and if it showed anything he would do a procedure called a blood patch.  Blood is withdrawn from the arm and re injected into the spinal space where the leak was, if they could find one.  The focus up until this time had been around the area in my lower back where my previous leaks and surgeries had been.
     I remember being utterly surprised when he came into the room after the MRI and told me they had found a leak in my neck.  They called it a spontaneous CSF leak.  I was puzzled.  He explained that in "rare" occurrences, the dura (the lining that is enclosed around the spinal cord) spontaneously springs a leak.  No specific reason except that the dura is sometimes thin.  This made sense to me.
     So I was given a mild sedative and blood was withdrawn and injected in my upper back.  I was then placed on a tilted table with my head closer to the floor. This was suppose to help the blood travel to my neck and patch any leak.  When I was finally  able to sit and then stand up, I was headache free.  I could return home, but with strict instructions to do no heavy lifting, pushing, head twisting, etc, for 6 weeks.  So Anthony, who had stayed the entire day at the hospital, drove me back to the hotel.  I was tired, but hopeful. After a day of recouperation I  flew home, yet again renewed.
     Things went well for about 6 months and then the headache returned.  It was recommended that I see a neurologist.  So off I went to Buffalo to the famous Dent Institute to meet with a Dr. Mezchler.  He was the leading headache specialist in the area.  He went through my entire history, joking with Dan telling him I was complicated.  I had heard that more than once.  What an odd assortment of malises I had been subjected to.  But he decided it would be in my best interest to have a MRA, similar to an MRI, but the images captured show movement, and could therefore pinpoint a leak.  This would mean I would have to have the neurostimulator removed.  Back to Dr. Plunkett we went.  If I had it removed I would not be able to have another implant because of scar tissue, and risk of a larger CSF leak.
     It was with a heavy heart that I went, in a blizzard, on Valentine's day into surgery yet again.  Having the device gone was depressing.  I no longer had that tingling relief.  I was seeing Dr. Krasner again for this chronic depression that kept cropping up every time something in my body went haywire.  She was helpful, and continually told me to be hopeful. Everything wrong was a physical ailment and could be hopefully fixed.  She also told me to find a new normal.  I would never be normal in the true sense of the world, because of all I had been through.  But I could find a place to begin again.  After this new problem was addressed.
     I know I was sad.  Just. Sad.
     Having the MRA done was, yes, hopeful.  But what would it mean?  Another leak?  Another blood patch? Surgery?
     I was not surprised to find out that there was indeed a new leak.  But was very surprised to discover there were 3 separate leaks in my neck. It meant major surgery. Again.  Because they were in areas not good for blood patches, he would surgically patch them.  There were risks.  Paralysis, death, nerve damage.
     I think this surgery, more so even than the previous surgeries hurt more.  I don't think it was any more painful, realistically, but my tolerance for pain had increased and therefore, I experienced in my head, neck and arms, severe pain.  I could barely move my right arm, and my fingers were numb.  This was terrifying for me.  My hands were my career.  I had managed to continue playing piano and organ through out my ordeals, but if my hands remained numb, it would be the end of the job I not only depended on, but was my one salvation.  No matter how bad things would get, I  always had my music.  This new predicament was truly scary.  I was sad.  And I was terrified.  I was told that it could take up to a year for nerves to regenerate, so to not lose hope.  At least the headache was gone, hopefully for good.
     So this brings me up to about 3 years ago.  I had returned function in my hands and was teaching piano again.  I had "quit" my job as an organist as my priest and I had come head to head on issues that could not be resolved.  I stopped going to church, so hurt was I with the breach of faith and job description made by the pastor of my parish.  I think this has been the biggest hurt in my life.  I let the people of my parish down, although my son Ben initially took over my job, but, busy with his life, soon gave it up only to play occasionally, as is still the case.  There were a few confrontations with this priest, and I soon had hateful feelings, and decided it wasn't worth it.  So, I prayed at home, playing and singing my praises, trying and not always succeeding to forgive.  Today, I am still very sad.  I started going back to church this past lent, forcing myself to face the man who had so deeply wounded my spirit.  It has been hard.  The first Sunday I came home and cried.  The organist who has since taken over, is neither a trained organist, nor a good leader.  The church was pitifully half filled.  It had been filled to standing room only 4 years ago.  No one sang.  No one spoke.  It was like going into a dead space.
     The next week, I went back, determined to fix what I thought I had done wrong.  I had defected.  It was my fault the church was no longer full.  I realize that a lot of it has been due to the pastor, but I had always felt like the glue that held things together.  The glue had long ago dried up and gone away.  So upset, I made a decision to become involved.  I sang.  Loud.  People didn't look at me, I think they realized it was me, there in the pews among them, doing what I do.  Praying, loudly.  I don't mean to sound pompous, but I know I had done a good job of bringing life to our little community.  And people approached me after mass, and told me so.  I am back, I told them.  I was going to try my hardest to get my job back, even though Fr. had told me "YOU quit.  We won't need you."  Well, I am here to say, yes, you do need me, whether you think so or not.  In this regard, I have come full circle.  And I think having cancer has made me stronger, a fighter.
     As my 3 year anniversary approaches, I am surrounded by love and beauty.  And it has taken 3 years to realize what a survivor is.  In my case, it is not just about the cancer, but about my whole adult life.  Getting the diagnose was one of those pivotal moments when my world literally tilted,  It felt as though the earth had moved into a new a scarier place.  I have gone through many emotions, but most of all, I have prayed.  I continue to dialog with God.  All the time.  I know that no one of us lives forever, and we really do not know the time or day when it will happen that we leave this world and enter a new a perfect one.  It is easier to think about this now.  I believe, for the moment, I have found an inner peace.
May you be so blessed with peace.
Barb
    

 So I didn't realize I was a survivor.  Sometimes I still don't.  After blogging this morning about my career as a music minister, it got me thinking. There were things that turned sour there as well, and I am in my 4th year since quitting a job that I loved and feeling betrayed by a priest who looked at me as only doing a "job" and not a ministry.  I don't feel comfortable going into details, but there comes a point in your life when you cannot abide an attack on your faith or your whole being and this is what happened.  It was at a low point in my life and deflated my spirit.  And that was just one year before I was diagnosed with cancer.  It is much more recent then my back and neck problems, but it seems important to add it.  God has been good to me, and although it hurts that I cannot be at church playing my prayers and encouraging others to sing their prayers as well , I believe it has happened for some bigger reason then myself.  I just need to wait and find out.
          
     So I will continue my story with the psychological test I had to undergo before I could have the surgery that would help alleviate my back and leg pain; the implantation of a neuro-stimulator.
I had a follow up appt. with Dr. Krasner about a week after taking the test.  She put my worries to rest when she said I didn't even come close to "failing" it.  She said although I had some depression, she explained that when you have chronic pain, it is a common occurrence.  She was very reassuring.  In fact she cleared me.  I was now free to meet with Dr. Plunkett again.  I decided that it would be a good idea to continue seeing Dr. Krasner because I found that I had so much anger bottled up inside.  I think I was just mad at the world.  But I blamed many things on Dan, and attacked his family because I felt that he was choosing them before me.  I don't think it so much anymore, but he is not a touchy feely kind of guy, and it is hard for him to show me affection and talk to me.  Just talking would have been a help, but we seemed to have gotten to a place where I was complaining constantly and I knew it, but I just wanted him to talk to me.  He didn't.  As I talked things out with Dr. Krasner I found that it is not all that uncommon for caregivers to learn this behavior of doing what needs to be done, but not being able to fix things, they tend to stop communicating a meaningful way.
     But I was hopeful.  I would have the surgery and I would feel better.  It wouldn't fix anything, but it was a start.  I made an appointment to meet with Dr. Plunkett again.
     I was a bit timid when Dan and I arrived for the consultation.  Our first meeting hadn't gone very well, and I still wasn't sure I liked him, but I did feel confident that he was a good neurosurgeon.  The visit went well.  He scheduled the surgery for a few weeks later.  He went over with me the specifics, like that I would be awake for the surgery even though I wouldn't feel any pain.  I needed to be awake so they could place the wire exactly where my pain was.  This would be a trial surgery, and the wires would be outside in a small incision.  I would be given a handheld "remote" that I could control how strong or weak the electrical stimulator would feel.  I would be able to adjust the frequency and strength of the signal.  He informed of the  seriousness of major surgery, especially near the spine.  The wire would be placed in the hollow space between the spinal cord and the dura, a membrane that encloses the spinal cord with spinal fluid.  There were the usual risks he had to tell me about, possible paralysis, spinal fluid leaks, and even death.  Very small percentages of these, but he had to tell me about them.

     The day of the surgery I remember feeling upbeat.  The anesthesiologist  promised me that I wouldn't be sick after the surgery, a problem I had with my previous surgeries.  And although I don't remember the specifics, I know he explained to me how I would be in this "twilight sleep", so that I could converse with the surgeon.  I didn't understand it, but I soon found out what it meant.  I remember waking, sort of, to find myself laying face down with oxygen on my face, and the tubing hurting my cheek.  Odd.  Dr. Plunkett was asking me if I could feel the tingling feeling.  It was amazing.  I could feel it, and as he worked to place the wire in the right spot I remember laughing when he asked if I could feel it in my "buttock".  I actually started laughing and was told to lay still.  A very strange sensation.  To explain how it felt, I used the analogy that it felt like the vibrations from an electric razor along the path of the pain.  It somehow tricked my brain into believing that the stimulation blocked the pain.  All I knew when I woke up in recovery that I  was amazed when the Medtronic "salesman" was at the side of the bed telling me he was going to turn the stimulator on.  It felt wonderful.  I cannot, to this day describe the feeling.  I was elated, excited, relieved.  Dr. Plunkett had come in as well and told me that I might experience a headache because of the puncture into the spinal canal.  I didn't care.
     I don't remember telling Dan about it, but I do remember later in the afternoon while Ben and Dan were visiting, I did get a headache.  The nurses gave me something for it and I think I fell asleep until the following morning.
     When I was told that even though I had a headache I should try and walk around testing the stimulator.  An intern came in and told me to try and start walking around as soon as possible.  As soon as she left the room, I got out of bed.  I noticed a sizable spot of watery blood where I had been laying.  I went out of the room to ask a nurse about.  She stopped the intern and told her.  She came with me into the room.  When she saw the spot she told me to lay down immediately as she was going to get Dr. Plunkett.  Something was wrong.  I knew that there was an open incision where the wire was, so I wasn't sure what was going on.  When he came in he said I needed to be rushed back into surgery, as it looked like I was leaking spinal fluid.  A lot of it.  I was terrified.  I called Dan right away.  I needed to see him before they wheeled me away.  I remember him getting there just moments before Dr. Plunkett himself wheeled me into the operating room.  I really don't remember much else.
     When  I woke up in recovery I was told that I had had a "brain sag".  It meant that the spinal fluid that had leaked out had caused the  brain(which floats in the spinal fluid) actually sag.  I felt strange.  I had a massive headache, and I was foggy.  Dr. Plunkett informed me that they had to remove the wire, and the leak was sealed with packing.  I should start to feel better.  My brain had suffered a trauma and it might take a while for things to come around.  It was a strange sensation, and the headache didn't seem to go away despite the pain meds I was given.
    In all I spent over 10 days in the hospital for a trial which should have been an overnight stay.  Because the  headache didn't seem to get any better, the doctor did several procedures until finally I was well enough to go home.  I had talked with Dr. Plunkett, who I now felt much more warmly about and was adamant that I wanted the device because it had worked.  He told me I would have to wait at least 6 weeks and then we would see.
     I know my mom tried to talk me out of it.  It was a serious issue, the brain sag, and although it took many weeks for me finally be free of the fog I had been in, I knew I wanted the relief I had briefly felt.  Dan tried to talk me out of it. a lot of people did.  But it did no good.  I wanted the surgery.
     And I got it, finally.  God had watched over me and saw that I healed, and gave me the thing I had most wanted, relief from the never ending pain.  I returned to work rejuvenated.  I started reconnecting with friends.  People noticed the difference.  They told me they could see it in my face.  I was happy.  I still had episodes when I would do too much and still have pain, but I had medications for those times.  But for the most part, things returned to normal, or what was my normal.
      Until one day, I lay my head on the table.  I had a headache.
      
      This may seem a never ending drama.  It was.  It seems long to me, and I lived it.  As I look at things now I see that while there has been much tumult in my life, there have been moments of peace.  I will continue this journey I am on knowing that God has given me peace when I've needed it, even if it doesn't always feel like it.  I am truly blessed.
I wish you peace.
Barb
    

     I am finding that keeping a blog is having a profound effect.  I think I've mentioned it before, but it's true.  I find myself thinking of what I will write the next time I post.  And then I start writing and find that it takes me to places I haven't visited in a very long time or a thought that meanders a bit.  I apologize if it seems that way to the reader, but it is easier to for me to write it in this way.  I also firmly believe that God is helping me pen this blog.  He knows my struggles and every thought I have. And it helps me.
     I met Dr. Susan Krasner for the psychological "test", whatever it was.  We talked for a bit and I explained my anger at my doctor, and my own firm belief that I was mentally sound.  As we talked I know I had little nibbles of fear that perhaps I did have some evil thing in my brain.  But the more we talked the more I knew I was all right.  She affirmed this by saying she didn't see any signs or red flags.  So she put me in a room gave me the paper test and left me alone for some time.  I don't remember exactly what the questions were, but there were statements and I had to rate them with a yes or no, sometimes, usually or always.  Questions like, " I feel so badly some days I wish I were dead".  "I like flowers".  I remember wondering what the heck flowers had to do with anything.  Dr. Krasner told me afterwards that the questions you think are important really aren't and the ones you wouldn't think have anything to do with anything were somehow the important ones.  I left that session feeling confident that I was okay.  She also assured me that she didn't think anything would come up, but I made an appointment for the following week to get the results.
      While I remember feeling positive, I also remember that each day that passed seemed to grow longer and farther away from the life redeeming surgery to implant the Neuro-Stimulator.  I often felt that God was against me.  Taking his time with my pain.  I didn't understand it and it made me mad. 
     I had been working in my church for about 10 years at the time.  I had always used music as my prayer, and I tried so hard to help the people of my parish to pray in song.  To enhance the liturgy.  It was always my mantra.  I never took weekends off.  I played for every funeral and wedding and other special day.  The only time I was off was when I was having surgery, and even then, I would go back as soon as I could.  That job was my sanity.  It was a "job" but it was a ministry that I believe God had led me to.
      Let me  veer  away from my topic for a moment and explain a little about my career.  As a high school student, I didn't enjoy school, I was not popular and I wasn't anything close to looking like a girl.  This has been affirmed through the years as my children have tried to find pictures of me as a youth and laughing hysterically.  I tried to keep things far away from their eyes, and in fact had done the same with Dan.  Looking back, I am not so sensitive.  I suppose we all feel awkward at that age, but some feel it more.  I guess you could say I was the victim of some "bullying".  When I was in 6th grade, a group of "popular" kids had made up a song about me.  Something about a monkey.  It was very hurtful and stayed with me for a very long time.  It is amazing the things that shape us.  I remember several years ago being at a Christmas party with family and friends, and a girl who had been in that "popular" group.  She remembered the song, and started singing it as she laughed remembering it.  I am sure it was done in harmless fun, but it hurt me deeply, even as an adult.  Those sorts of things get embedded  in our heads and never really leave.  I remember the joking around the table as I turned red and literally got sick to my stomach.  I know I asked Dan to take me home and he didn't understand until I explained it to him.  He tried to  explain to me that she was "just that way", trying to ease my pain.  Maybe it helped.  I don't know;  It still hurts.
     At any rate, when I graduated from high school, I thought I wanted to go to college to be a writer.  No one told me or encouraged me to go into the music or art fields, the only things that I did like about high school.  At that time when you met with your student counselor, they just shuffled you through the system, not really making suggestions about possible career choices.  So I went to our local school, SUNY at Fredonia.  It is a music school.  But it was cheap.  And I had to put myself through school.  I come from a family with 8 children.  So our parents had instilled in us a good work ethic, making us work as strawberry pickers and grape tie-ers, we worked at age 12.  It was a given.  So when each of us graduated to college, there was no question of us not going, but there was also no questions of our own financial responsibilities.  So off I went to school, hating it, yet going every day to earn a degree in Children's Literature.  A degree I had to create on my own because Fredonia did not offer this as an option.  The music buildings were on the other side of the campus, and I had little interaction with other students or activities.  I was a commuter.  I went to class and went home.  I had one best girlfriend that was also from Fredonia and attending the college.  Julie.  We had been friends in high school, and found one another to be so valuable that we are still life long friends.  She is even Daniel's Godmother.  She is another sister to me, perhaps even closer.  We stuck together like glue in those days, drinking, boyfriends, socially, confidentially.  When we graduated, she moved to Buffalo, got married and got a job as a CPA.  I graduated, got a job and went to work in a Jewelry store.  I wasn't writing.
     I was raised as a Catholic.  I went to church every Sunday, sat with my large family, belonged to the CYO as a high school student.  When Dan and I started dating, it was "cool" to go to church with your boyfriend.  We had belonged to the same church and had never known each other.  I had gone to public high school, and he had gone to the Catholic high school, so it wasn't unusual that we wouldn't know one another.  We actually met at my sister Karen's wedding.  He was one of Larry's groomsmen.  I used to keep a journal, and I remember writing the night after the wedding  that I thought Dan was the man I was going to marry.  I didn't know why.  I didn't even know him.  But some eight months later we started dating.  That story is a whole other episode.
     So, some time after Jenna was born, I decided to join the church choir when the "little old lady" was told she must retire because of health and not being able to climb the stairs any longer.  She was an old timer.  She probably had no actual training, but had been there for as long as I could remember.  A new organist was hired and it seemed the right time.  After only a few years, he relocated to another state, and because I was able to play the piano I begged Fr. Dan to give me a chance.  He hired me.    I was awful.  I took lessons from a great organist from the college.  He came to St. Anthony's every week to teach me.  Little by little I learned to tranfer the knowledge of the piano to the organ.  I also sang.  Loud. And a lot.  I was leading the congregation.  It was wonderful.  Something was awakened in me.  As I learned the technical skills of playing and directing a choir, I found my faith mulitiplied by leaps and bounds.  I went to workshops, I learned my way through.  The people of my parish were very forgiviing for my stumbling of missed notes, playing to loudly or not loud enough.  That support was a saving grace.  It lifted me up, confirming that I had made the right decision and with the help of the church and Fr. Dan, I went back to the Music School at Fredonia and worked on my music degree.  While I learned a lot, I didn't get the chance to finish, as by that time, Ben was a toddler, Jenna was in school by then, and I found out that I was pregnant with Daniel.  And I was still working, now as a menswear buyer at a department store called Sidey's, now closed.  With the hard pregnancy and the store closing, my job as music director became my full time job.  And I took it seriously.  Picking hymns for each week was a job of searching for the right songs to fit the weeks readings.  And in Fr. Dan I had a weekly table talk and coffee to talk about what he was preaching and teaching about.  That was a good time.  I hadn't been told I had cancer.  I hadn't started having back issues.  I even taught in the Catholic elementary school for a year before Fr. Dan wanted me to take on more responsibilites and become the Liturgy coordinator.  Things were good.  My faith was strong and I had come through that educational floundering some 10 years after I had originally graduated from college. That was all before my back betrayed me.  I  missed Christmas, Easter and Thanksgiving mornings with my family to be at church.  They followed me though.  We managed to adjust our home time to make everything work.  The kids often came upstairs in church and sat on the organ bench with me.  Ben learned his love of music in church.  In fact, I was pregnant with him the Easter Sunday he was due to be born.  He waited until after Easter and was born 3 days later.  He is today and accomplished musician.  He is naturally gifted.  I had to work at learning music.  He seemed to pick it up so much easier.  Today he often plays in church.  And when he sings... he has a voice blessed by God.  This I am sure of.
     As I meandered off my topic of surviving, I look at these words I have written and realize that in a way, music was my savior.  God gave me this gift to share and I have done it willingly and longingly.  It has always brought me closer to my God.  It has shaped my life and the lives of my family.  If Fr. Dan had never given me a chance, I might not be in this place that I am today.  It cemented my faith.  When my back and legs became an issue, always, always, I played.  And I sang.  I prayed. I longed for peace.

     As I have drifted off my topic so completely now that I think I will take a break and come back a little later to continue with my psychological test and what transpired after it.
I wish you peace
Survive
Barb

   

     I am a survivor.  I have to say this to myself some days. Like when I am feeling a little off.  I have many days like this.  I cannot say exactly what it is that hurts or bothers me, but, I just feel, "off".  This morning I went for physical therapy for my neck.  It is feeling a little better.  I can now turn my head without a surge of pain.  I also bought new sheets and put them on the bed.  Making the bed is just one of those tasks that we all need to do.  Since all of my back problems I have avoided it, making Dan do it, or wait until he can do it himself.  Today I did it myself.  It feels like a major accomplishment.  I suppose it is in a way.  God graces me with these little victories.  And they are little, but they seem awfully big to me.  I often count my living a new day as a blessing.  Some days not so much.  Like where I was mentally. Until  I found a  lifeline with a new device called a Neuro-Stimulator.

     I was living in a world of pain, taking only ibuprofen for pain because I didn't want to be considered "addicted" to the narcotic pain meds, as I was when I had visited the Cleveland Clinic.  I was taking a daily antidepressant.  Looking back, I think I was probably saved by that.  I was at a very low point.  It felt as though I was in a large black hole that was getting bigger and I couldn't climb out and was beginning to think that maybe it would be better if I just let it swallow me up.  Then a friend suggested getting in touch with a neurosurgeon about a device she had seen the famous Jerry Lewis praising.  It was called a Neuro-Stimulator.  It looked interesting.  According to Jerry, it saved his life.  Having lived his life doing prat falls, a physical comedy, his back was damaged beyond repair and he was living with day to day pain.  This device was implanted in his back , along with a hand held device.  I decided to look into it.  I had nothing to lose.
     I printed out a sheet with the names of  only a handful of neurosurgeons that did this procedure.  And there was only one in Buffalo at the time.  About and hour away, at Buffalo General Hospital was also the office of Dr. Robert Plunket.  With Dan, we made an appointment.
     The first visit was with a physicians assistance.  We needed my most recent MRI images, and my medical history.  I was excited.  She looked at the images and had read through my reports and said I was a perfect candidate.  She explained that it is a major surgery, and needed to address the issue of body image, as there would be an implanted battery on my left upper buttock.  I laughed when she asked about this. "Have you seen my back?".  She laughed as well and said she just had to ask.  I would need to be cleared by my doctor and have a mental evaluation.  I thought I could get this done without problem.  Although in my mind I knew I was prone to the ever present depression, I truly did not think I needed "counselling".  So, she told me to get these two things done and when I came for the next visit I would meet the doctor and schedule surgery.
     That's not quite how it went.  I went to my doctor.  Having never been to a psychologist before, he recommended a counselor.  I made that appointment and went for a short visit and was told everything checked out fine.
     Then I met Dr. Plunket.  It was the beginning of a 6 year relationship that didn't start out very well.  He came in, introduced himself to me and promptly told me that I would need to have a psychological "test" before I could move forward.  I told him I had already met with a counselor.  He said that my doctor had recommended my seeing someone.  I saw red.  I have a love/hate relationship with my primary care doctor.  We are about the same age and I had started going to him when he was just starting out.  We had children the same ages and I was friends with his wife as well.  I thought he knew me better then to think I needed counselling.  Hadn't I gone off all those meds on my own because of the addiction question?  Hadn't I gone through all these surgeries with him on my side?  Why would he think I needed mental help?  
     I am Italian.  I have a short fuse.  I got short with Dr. Plunkett.  His back went up and he told me it didn't matter what I thought, I HAD to have this "test".  He said once that was done we would meet again and schedule the surgery.  I was in tears.  I finally had  hope to have my pain relieved and here I was stuck before I had even begun.  After he left the room, Dan said "he wasn't very nice about it.  I don't think I like him."  I agreed but knew he was my best hope for  seeing any pain relief.
      When we left the examining room I asked Dr. Plunkett to give me the name of the best counselor.  If I had to have this test done I wanted the best.  I absolutely believed I was mentally fit.  Depression, yes, mental problems, no.  A big NO.  He gave me several names and suggested one that he thought was best.  She was a Pain Specialist PHD.
     I went home and called, made an appointment, and then called my primary.  I had talked to my sister Karen who works in his office.  I told her about his pronouncement about my mental "health".  She told me to make an appointment and confront him about it.  She gave me some input as to how to approach him, as doctors are never wrong.  I do not remember ever being so upset about something.  Even as I am writing this, I remember very clearly what it felt like.  I was burning angry.  Dan, although I think he knew how devastating this had been to me, I don't think he knew how it devastating it had been in my mind.  It felt as though I were being told I had something wrong with me, other than the issues of pain and those associated with it.  It not only made me angry it made me second guess myself.  Was there something wrong?  Was there a possibility that there was a mental issue?  What did this mean for the surgery? 
     I don't exactly remember what was said in that conference with Dr. B.  But I do remember him saying he had suggested a few visits with a psychologist wouldn't be a bad thing, and he didn't realize that it would hold up the promising surgery.  I know that he did say at one point that maybe, "maybe", he had made an error in judgement.  It was enough for me and we left friends although I did tell him that I didn't appreciate having to have this test done and having to pay for it.
     I haven't written anything about the financial stress my ongoing health issues has had on us.  I do not think there has been a time since that very first surgery when we haven't owed doctors, surgeons, ER visits, PT, and specialists.  I have often prayed to God to just see us through another month.  And he has.  It always seems when we are so far behind that we will never catch up.  We haven't ever caught up, but we have managed to keep a roof over our heads, food to keep our bellies full (although sometimes not the healthiest of food), and a car to drive.  I have often said to Dan that I wish we had just enough to pay all our bills and have a little left over for a rainy day.  It seemed that all our days were rainy.  That I was still working as Music director helped, but just not enough.  It created cracks in our marriage.  I was often mad at Dan for things I probably shouldn't have been.  And I think he was equally so.  

     As I continue this saga of my life, I am continually reminded of how God has blessed me and how he has worked through me.  Working to help me see through my anger, my pain, my fears.  I see all this clearly now.  While I was going through some of the harder things, I honestly didn't think I was worthy.  I know I used a reference that my very best friend in the word, Fr. Dan gave me a long long time ago.  We all have crosses to bear, some are bigger than others, but we all carry them.  I know I have said this often, but used to think,"yeah, well, right, some of us really have bigger ones."  And I would try to pray it away, or reason it away, even wish it away.
Today, I don't pray it away. Today I am blessed by my cross.  I have clearer vision.  I still do not know what God has in store for me, or why I was chosen to have cancer, but I do believe that in some way or other it must be a gift.  And I will find out what it is when I die and go to heaven.
Peace
Barb

     Today it is raining. It is one of those days when my body screams out.  I have pain in my neck, my back, my hands... My hands are my lifeblood.  They perform my praise to God.  I must play the piano or the organ.  I must sing.  It reminds me.  It is my form of prayer.  It reminds me.  I am a survivor.  It reminds me.  I have only recently realized I am a survivor.
     As I continue my health history I find that as I document the events from my life, it is having a profound  effect on me.  I am finding that my mind is constantly thinking of all the things that have shaped who I am today.  So I will continue now...
   
     As a continued to suffer from pain in my back and leg after that first major surgery, I found myself back in the hospital for pain control.  I wasn't used to this thing which had wrapped itself around my body.  I was given pain medications.  An MRI test revealed that the fusion had only worked in the front part of my vertebra.  The back part was moving up and down and causing the nerves to swell.  It was decided that I would need rods and screws.  Major surgery number 2.
     Again I went under the knife.  This time the muscles in my back were cut open to insert rods and screws.  Taking a piece of bone from my hip, again a fusion was attempted.  Another weeks turned into months with no relief.  More pain medication.  I was now taking an antidepressant as well.  I went for therapy.  I used heat, ice, traction, exercises to strengthen my back muscles, walking  backwards to strengthen my butt and leg.  Nothing seemed to help.  
     What I was thinking then I do not remember very well.  I was in a drug and pain fog.  I know my children must have suffered for this.  My family jokingly started calling me "Gimpy".  My kids grabbed the name and still occasionally use it.  While I laughed along with them, deep down I was beginning to feel like a failure.  It had been over a year and I seemed to be getting worse instead of better.
     Another hospital stay because of such severe pain I could barely walk.  This time it was found that the fusion had worked, but the screws had toggled loose.  It was decided that the rods and screws would need to come out.  So once again my back was cut into.  The muscles were cut again.
  
     What followed after this was a series of pain management, PT, more surgeries.  The nerves in my back had stretched and pulled out of shape.  The mental nerves were being numbed by morphine, antidepressants, muscle relaxers...  I was seen at Clevland Clinic where I was told I was addicted and needed to be admitted and "detox".  I was appalled.  I had been given pain medication because I had pain.  I was taking anti depressants because I was severely depressed.
    When I returned from the Clevland Clinic, I called my doctor and stopped all medications except the antidepressant.  I was convinced that although I may have been "addicted", it was not for lack of trying to rid myself of pain.  I found that with or without the pain medication, I continued to experience excurciating pain.  And somewhere during this time, I started not sleeping well.  I was now tired mentally and physically.
     It was during this period that I started having thoughts that maybe it would be better for my family if I wasn't there.  During the school year I missed events.  Concerts, art shows, athletic events.  During the summer I was unable to sign my children up for any of the many summer programs provided by our community.  I reasoned with the children that they would not be any worse off for not having to run around to this program or that.  In truth, I grieved.  I would take them to the library and pray that they would hurry to pick out books so I could return home and to my sofa.  Picnics were almost nonexsistant.   I couldn't seem to function.
     We had, through our Catholic School family, formed a group of 6 families that would camp together for a week at Allegheny State Park.  I used to love to hike and cook out, sleep in a log cabin, running after 18 month old Daniel.  As my back situation became worse, my participation in the group activity whittled down to sitting in a lawn chair by the fire and fixing the daily lunches.  Dan was never a fan of camping, usually spending the days at work and the evening by the fire.  So he was not upset when we had to finally decline our yearly trip.  The kids were more than a little upset.  This is I have to say, one of the few family memories that I treasure.  They seemed to love me just a little more.  It seemed that the freedom they had running, playing in the streams, getting dirty and loving it, was an escape for them.  It was a freedom to just be children.  Until the last year it was just that for me as well.  The last year, I distinctly remember that I was unhappy the entire week, so much so that I think we left early.  I was fixing lunch for 30 some people, helping prep for dinner, making sure to know where my kids were as well as watching other kids.  It was not fun anymore.  And I hurt.  Always I hurt.

     Still, looking back at this period in my life I think there was a rock bottom low.  I am not exactly sure when it happened.  But I would think if I could just escape.  Just get in the car and drive away... if I could escape my family to relieve them of the burden of caring for me... if I could just go away.... be gone....  I didn't realize it until I was forced into a consultation with a Pain Psychologist before I could receive a new implanted device called a neuro-stimulator.

     I am amazed that as I sit here in pain today it is so much different then those hopeless years.  Had I not been faced with my own mortality, I am not sure how I would have survived.  This is another long entry in my new experience as a blogger.  I am not sure anyone will read it, but I know that it having an effect on me.  Revisiting sad and hopeless days and feelings is so odd.  I look back with a sense of knowing that perhaps all these things have happened for me and not to me.  Having cancer changes your perspective on things.  I don't think I realized this.  And I think God is using me for good in some way or another.  I have a unique life story as all of us do.  I haven't said very much about my husband.  While we are in a very good place now, during those long painful years we weren't so much.  I think maybe I will explore that a bit more.  Maybe tomorrow.
with the peace of God
Barb

     It is another new day. I would like to continue where I left off yesterday.
     Those first days of cancer, were definitely scary ones.  I was thinking of my time left here on earth.  What would happen to my family?  What would happen to Dan?  I wasn't sure of anything, and most of all, if I could fight this fight that was ahead of me.  I had been through so much already.  
     In 1997, I experienced a centrally herniated disc.  L4-L5, the disc level, which at the time I knew nothing about.  All I did know that, having been a very active mother of 3 small children, I was experiencing pain like none I had before.  My right leg was numb and painful at the same time.  I couldn't stand, I couldn't sit, even sleeping became elusive.  When I had exhausted the PT my doctor had recommended, before being diagnosed, and not knowing about the disc herniation, he had told me that many, many people have herniated disc and that physical therapy usually helps.  Only a very small percentage ever need surgery.  "A very small percentage".  A phrase I would come to know very well.
     A centrally herniated disc, in my case, meant that the disc was bulging against my spinal cord.  I would need surgery or eventually I might lose the use of my legs.  It was a terrifying statement.  I would need surgery.  Major surgery.
     While waiting for that date to approach, my gallbladder decided to stop working.  I lost 20 lbs in a very short span of time, and had my first ever surgery.  It was an overnight stay at our local hospital, Brooks Memorial.  I remember being in quite a it of pain and being sent home with a heavy dose of pain medication.  It was late afternoon when I arrived home.  My mom had made a nice meatloaf dinner.  I was nicely snuggled on the sofa with a tray of food, and had taken the first pill I had ever had for pain.  I remember falling asleep with the fork in my hand.  It seemed powerful stuff then.  Such would not be the case as my life went on.
      As I prepared for this major back surgery, I fretted over my children.  My 3 year old Daniel was just a baby.  Jenna and Ben were enrolled at Northern Chautauqua Catholic School.  What a blessing that turned out to be, as our school family came to our aid, with offers of babysitting, meals, errand running, and the much needed moral support.  It would be a long recovery.  At least 3 to 6 months in a brace which meant no driving or lifting.  I was afraid.  I would no longer be able to lift my 3 year old child.  And the car pooling would end.  6 months seemed like an awfully long time.  It would later prove to be much longer than 6 months.
     The method the doctor decided to use was to use an incision below my belly, a general surgeon would perform this part, removing my internal organs, like a bag of groceries, he said.  Then the neurosurgeon would remove the damaged disc and insert 2 titanium cages in the space with cadaver bone.  The bone was suppose to fuse the two vertebra together.  Suppose to.
     As they wheeled me into surgery, I told my husband I loved him, and I had a terrifying moment when I thought I might not wake up.  "Hug the children for me", I cried and if I didn't make it, or something went wrong....Dan looked at me and said, Where is this coming from all of a sudden?"  Evidently, I had never relayed my fears to him, or he had not heard my fear.  To say I was terrified was an understatement.  I had never experienced anything like this before and I wanted to crawl off the bed, or scream, or.... I just cannot explain it.  If only that feeling were the worst I would ever experience.  It wouldn't, of course.  It paled in comparison to the day I was told I had cancer.  The one thing that finally calmed me down, was in the pre-op area.  I was at St. Joesph's Hospital.  When I looked up from my bed, there was a crucifix on the wall.  It immediately calmed me, as did the medicine the anaesthesiologist injected into my IV.
     The surgery, over and done with, I was up the next morning with a nurse trying to get me to walk.  I don't think I have ever had that kind of pain since that first surgery.  I could only take a few steps.  
     It did get better.  After 5 days at the hospital I was sent home in the offending plastic brace.  I do not remember a lot about those first days after surgery.  I think I have blocked it out.  The things I do remember about it was the wonderful help I received from many friends and family.  I know I had to go through PT again sometime after the surgery.  But I didn't see any improvement in my leg and back pain.

There is so much more for me to write about. Tears, frustration, depression.  Writing about this first surgery, when I think back on it, seems a lifetime ago.  So much changed after that first surgery.  My life as a mother was forever changed.  There would be no going back to a normal, active life.  It was the beginning of a nightmare of failed surgeries, a fight with pain leading to many medications, a serious and ongoing depression that would stop me cold.  All these things now, compared to the diagnosis of cancer, seemed to perhaps be a preparation for it.  I have always said that God had a plan for us, we just don't know what it is, or why we must suffer.  I believed that God had given me this cross to bear and I would carry it.  That is not to say there were times when I questioned God.  Oh for insight to see just a bit into that mind of God to see what is store for us.
Enough for today.  This is a very long story and if you choose to follow it, please bear with me as I may wander a bit now and then, as the journey between the physical ailments that are not life threatening and the cancer diagnosis are vast.  
I pray you peace.
 

The Beginning

   I have thought quite a lot about how I would write this blog.  I have always wanted to write about my health issues, which date back to 1997.  Today I will only write a bit.  So many things happening in my life and the life of my family.  I seem to have accumulated many thoughts, feelings and expressions that I want to share, and I have started and stopped writing too many times to count.  I always seem to get stuck.  So I think I will write it day by day in a blog.  And where to start?  Why at the beginning of course.... or not.
    I have had over 15 back surgeries dating back to 1997.  My youngest child was 3 years old.  I do not believe that he has ever known me as a healthy mom.  I have struggled over this.  Daniel is and was a very loving child.  And a comedian.  He is 20.  And he always smiles.  Ben is 24 and just this past Thursday, graduated from the State Fire Academy.  He is now a professional Firefighter and Paramedic.  Jenna is 26.  She moved from Rochester to Virginia last September with hers boyfriend Pat.  She is a Dr. of Physical Therapy.  She loves working with dancers.  I love all my children.  And my husband Dan.  We've been married 29 years.  It hasn't always been easy.  He is not great at expressing feelings.  This is sometimes a problem, and I will elaborate more as I delve into this unusual life I have.
    As I said, I have had over 15 back surgeries, which in and of themselves are a story to tell, as I have had unusual and rare things happen.  But nothing could have prepared me for the news I received while in the hospital 3 years ago, on June 6Th.  I had been in the hospital for stomach pains, and a white blood count that kept going up and down.  After two weeks, an oncologist was called in to talk to me about blood disorder possibilities.  When I met him for the first time, he didn't seem too concerned that my white blood cell count was 47000.  Normal is between 4000 to 10000.  He said to wait a few days and if  the numbers didn't  settle down he would do a blood test for leukemia.  I remember distinctly not being upset about this possibility.  After all, I wasn't really all that sick anymore, and Leukemia?  No, it couldn't happen.
      A few days later, my numbers hadn't changed and so the blood test was ordered.  It would take 3 to 5 days to get the results.  I continued to have stomach pains, which incidently had nothing to do with the high blood count.  That diagnosis would come a year later.
     When 5 days had passed, the head nurse came in to my room and asked for Dan's phone number.  I knew something was wrong.  Why did she need it?  I do not remember her telling me anything, but I do remember the room suddenly filling with nurses, and one coming over and hugging me and saying how sorry she was but that I would get through this.  I remember shaking.  And, I had cancer.  Leukemia.  When the head nurse came back in, I know she told me that Dr. Sood, the oncologist, would see me in his office the following day and do a bone biopsy.  I don't think I cried.  I know I shook.  And I know I kept saying, "I have cancer, I can't have cancer".  This would be too cruel.  I had suffered for years from so many failed back surgeries.  God wouldn't do this to me.  It blindsided me.  Literally, when all those nurse came into my room, my world tilted.  I could feel it tilt.
     They discharged me that day.  I remember being driven in the wheelchair to the elevator, passing the nurses station, and seeing the looks of pity, and hearing,"I'm so sorry", more than once.  I do not really remember much of that.  I know Dan came in the room and I just hugged him, let him hug me.  I don't think he got just then.  I don't think he realized I had cancer.  Or in my tilted world, I didn't think he did.  I didn't feel it.  He should know how I felt.  He should have said something else, hugged me harder.  Done something.  What that was I do not know.  I felt alone with him right there by my side.  I was frozen.  And I stayed there.
     The following morning, my sister Karen accompanied me to Dr. Sood's office.  I had asked her to come with me.  She would know what to ask.  She had lost her husband to lung cancer several years earlier.  I knew it might be hard for her, but I didn't really care.  I was selfish.  Dan wouldn't know what to ask. He wouldn't be any help at all.  Why I felt that I don't know. Karen could help.  She had been through it.
    I remember being in the room and the Dr. coming in.  He said the test was positive for Leukemia.  I started crying.  He closed his folder and leaned in closer to me.  He told me that if I had to have leukemia, this was the best kind to have.  Chronic Myleoid   Leukemia.  He explained what it was, and would do the bone marrow biopsy right there in the office.  I remember it hurt.  And I remember Karen asking the Dr. to see it.  It was such a tiny sample, but it caused quite a bit of pain. It would be sent out.  It would tell the doctor if I had the mutated chromosone that causes white blood cells to grow in number and are defective.  Cancer cells.  I know I was confused.  I didn't understand that there are different types of leukemia.  I did go home and look it up on the internet.  I will have to research it again to explain it better in my next blog.  
     I find it tires me to write about this.  It is still very emotional, even after 3 years.  I think I will continue this story tomorrow.  If you are reading this and wishing to follow, I would like to let you know that I am doing very well now, even as I go back to this time 3 years ago when I was not fine.  With God's grace I will write tomorrow.
Peace