It cost HOW much????

     So my husband's insurance package comes comes due at the end of this month.  There is to be a change.  A big change.  We sort of knew this was going to happen, but not the extent that will drastically.  Because I have cancer.
  When Dan came home from work the other night, he produced two different insurance plans.  In one, our payment goes up $200.00 plus higher co-pays.  The other doesn't increase the cost, but the deductible goes to $3000.00 per person per year.  To a healthy person, this would not be an issue.  However, the gleevec that  I take every day to keep the cancer away, is  $9000 a month prescription.  The insurance will pay 2/3 of it.  That would leave us with a co-pay of $3000.00 a month.  We don't even have $500.00 in our savings account.  I wonder what will happen now.  I am terrified that we will end up losing what little we have.  A Rep is suppose to come over next week and try to give us some options. All because I have cancer.
    I did some research this morning.  I may get some help from Medicare.  The rep will be able to tell us this.  But as I was curious how this medication which I pay 0.00 co-pay can now cost me $3000.00.  So I went to the Gleevec website.  It is amazing what you find when you start looking.  The website stated several possible aids that help pay for the drug.  It also stated that Novartis may also be able to help.  I will be calling on Monday.  I am almost sure, well, maybe a little sure, that the co-pay will magically drop to an affordable rate.  Although, right now, with the insurance rate going up so much, I am not sure we will be able to pay for any of my prescriptions.   I know I am blessed to now be in complete remission.  But what happens if I cannot afford the cancer medication?  Do I have the option?  If I don't, what then?  Do I die?  It boggles my mind.
     I have a friend that died last year from cancer.  I know when she was in her final months we talked about medications.  She was waiting for a particular approval.  It cost so much money.  And she couldn't afford it.  I don't know if had any effect on her disease.  I cannot understand about medicine.
     We are pawns it would seem in the medical world.  While the research and prognosis is very good for CML, I am not sure how all the money in the world could make having cancer a good thing.  I feel like I am about to be penalized for having cancer.
     A few months ago, the head secretary at  Dan's  office said some things about my insurance claims, as if to say, I've had too many.  She also intimated that I had more ER visits than anyone else on their plan.  And Dan's boss also said something about one employee had over 13 visits to the ER this past year.  I was livid.  First of all, I don't think the secretary should have said anything about anything.  And that his boss mentioned how MANY visit?  Come on.  And just to set the record straight.  I have NOT been in the ER 13 times in a year.  Ever.  I am not sure if maybe they were trying to scare him . I know the employer has a lot of pressure to try and keep premiums at a minimum.  But to actually pick us out?  I have CANCER. Dammit.  I already have enough stress.
     I am hoping that Medicare will allow me to just go off of his insurance completely.  It's not very likely, but I have been upset ever since he told me about the changes.  Of course, he has not had a raise in over 5 or 6 years.  That doesn't help either.
     On a completely different topic, We finally got to see Jenna and Pat last weekend.  We drove to Virginia last Friday and left on this past Monday.  It was wonderful.  I miss Jenna so much, and it was wonderful just being able to reach out and touch her.  We did lots of things while there, but I would have been happy to just sit around with a glass of wine or a bottle of beer, and talk.  Actually, on Saturday, that is exactly what we did. Sort of.  It rained all that day.  We took a drive to the Shenandoah Valley State Park.  It was too foggy to see any of the valleys.  So we stopped at Trader Joe's, took Barney(their dog) and went to "Barrel Oaks Winery".  It is a pet friendly winery with an inside and and outside.  We sat under an umbrella at a table with our snacks, bought 3 bottles of wine and proceeded to drink all of them(not Pat-DD).  We talked all afternoon.  When we left there, we went to the Fairfax Town Square to an outdoor bar.  I had a Mojhito for the first time ever.  Actually, we all did.  And then we had another.  It was so relaxing.  I felt a little giddy.  I just smiled every time I looked at Jenna.
     By the time Sunday came around, the weather had also turned around, so we went into Washington D.C. and did a lot of walking.  I also had my first Falafal at a food truck. We were all exhausted from being tourists so that when we got back to their apartment, we just ordered pizza.  Jenna had to leave for work at 5:30 on Monday so, she was extremely tired, and I said our goodbyes before I went to bed early, around 9:30.  When we had first arrived and I had hugged her I told her I was going to hug her all weekend.  And I tried.  She is just not a warm and fuzzy girl.  But I did get my share of hugs, none so bittersweet than the last one on Sunday night.  We had many good talks.
     We talked about where they are living now, and plans for the next year or two.  We talked about them getting engaged and married.  Pat is ready to do it yesterday.  Jenna kept telling us if we wanted to go with them to the judge's office we were more than welcome.  She was sounding very hard and matter-of-fact.  While I was in bed later that night after a few tears, I realized that all that bluster is just a cover up.  I think she is very homesick.  And I think she would also like a nice big wedding but know that they cannot afford it, so she is resigning herself to not having a wedding at all.  I think they will have a small wedding.  They have only been in Virginia a year in September.  I think they will feel more "at home" after another year.  I wish I could wave a magic wand and make all their dreams come true.
    Before closing this post, I think I would like  to mention that Ben is now employed by the Fredonia Fire Department.  He started this week.  A grand accomplishment.  And Daniel is finishing up his fire school training tomorrow.  I am proud of all my children.  I would do anything for them.  If I could, I would.
Peace to all.

My Fundraising Page

My Fundraising Page  I am participating in a Light the Night event.  

My modest goal is $250.00.  My dream goal is $1000.00  My event will take place on August 22, 2014.  We will take a leisurely walk from St. Anthony's parking lot in Fredonia NY and stroll downtown to the Farm Festival in the parks.     

Only $10.00 donation to walk.  This will go directly to the Leukemia and Lymphoma Society to end the fight of this blood cancer.

Come walk with me.  Buy a balloon which we will launch at the conclusion of the walk.  We will also be launching some lanterns.  Price to be determined.

This is a first time event, and I am hoping to get lots of walkers.  If you cannot make it but would like to make a donation, go to Leukemia & Lymphoma Society.org, then under donate add my name: Barbara Siracuse.

Thank you in advance.  I am a 3 year survivor of CML, and was recently told I am now cancer free.  Help me help others and make a donation today won't you?

Barb Siracuse

     It was a poignant weekend.  Relay for Life was on Saturday.  I walked in the survivor's lap.  And Dan walked beside me in the care giver's lap.  I was anxious to tell everyone we knew  that I am cancer free.  And talking with many people, many of the questions I've had, the feelings of uncertainty, the niggling fear.. all of it, we who are survivors have experienced the same things.  I walked with a friend who has been a survivor and cancer free for 5 or 6 years.  It felt wonderful to be able to compare notes.  It was also sad.  There was a little girl, she couldn't have been more then 2 years old.  She had a cape that said "Survivor" on it.  Why the children?
     We walked around the track and visited many of the tents.  There were Chinese  auctions, things to buy,pictures to take.  I hadn't donated any money ahead of time, so we did a few chances.  They served  a lunch reception after the survivor's laps.  We stayed for awhile and then came home for awhile.  I have never been to the luminary ceremony. 
    At dusk, we returned to the track to find white luminary bags lining the track, some on both sides.  As we walked around, reading the names of so many who have passed from cancer, it was very emotional.  My brother in law Larry passed from lung cancer 6 or 7 years ago.  A good friend, Christine Phelka passed this past year from cancer. Many names, many memories.  And then there were bags in honor of survivors.  We hadn't bought any bags, so I was surprised when walking to see my name with little music notes lit up.  One of my piano students had done it.  I took a picture of it.  It was all so tear jerking for me.
     When all the bags were lit, and it was dark, the chair people gave a little talk and then asked that we all take a silent lap around the track with a glow stick.  It was amazing.  All the activity that had been going on all day, the music, the voices, the sports,... all of it now silenced by this solitary line of people following one another.  At the end of the lap, there was a large white ribbon in lights laid out on the grass.  They had asked that we all put our glow sticks in the ribbon.  It was a beautiful thing.  Although I felt sad for the many who have passed from this horrible disease, there was a feeling of hope.  Hope for the future.  Hope for a cure. Hope that life will one day exist without cancer.
     As an aside, in the afternoon when we had come home, I had a vomiting episode.  I threw  up the pizza that had been served.  And I felt sick.  I laid down on the sofa a fell asleep for over an hour.  Although I still had a sour stomach when I woke up, I was determined to make it back to the luminary ceremony.   I am so glad that I did.  The chemo med may rear its ugly head  now and again, but this was a reason for me to stand up and move through the sickness.  God has seen fit to help me through these struggles.  Small struggles really, compared to the fight that I seem to have a victory over.  No cancer cells present.  I am still adjusting to this new news.
     I will continue to be blessed.  I do not know what the future holds.  I must still get through the continued testing of my thyroid.  Perhaps there will be cancer there.  But, perhaps there won't.  But the leukemia?  It is gone.  For now at least.  And God gives me a new sense of peace today.  I wish you peace if you are struggling. And I invite you to leave a message if you would like to comment, or just say, "hey, I'm a survivor too."

A time to reflect

          I am still over the moon since I received the news that I am in complete remission from my CML.  No active cancer cells.  It's been 2 days.  I spent most of Wednesday in a sort of haze of unbelief.  I was happy but spent much of the time teary eyed.  And I kept looking at the report the Dr. gave me showing on a graft how my numbers were so high, and now, there are no detectable bad cells.  We were planning to go out for a nice dinner tonight to celebrate.  I am not sure we will do that tonight, as I've been having some stomach issues(side effects of the Gleevec).  But I have spent to day in reflection.
     3 Years ago, on June 6th, I was issued the devastating news that I had cancer, Leukemia.  I remember the very moment.  The world shifted, literally.  I felt it move. And I remember being told that they had caught it early enough that once I started taking the Chemo med Gleevec I should go into remission pretty quickly.  Of course that didn't happen.  And there was a chance that it never would.  I might be one of the unlucky ones.
     3 years later, I have finally reached that milestone.  I have been thinking of the heartache I have had.  I cannot say it has miraculously disappeared.  I feel much more calm.  I am happy.  But I don't so much feel like jumping up and down and yelling hooray.  I feel more reflective.  I find my mind wandering around the last 3 years.  The wonderful support I've received, and the quiet acceptance I've learned to live with.  My mom and dad are wonderful people.  Our family has never been one that shows much emotion, but I know what this means for them.  With my sisters, they really have never said too much.  I don't think they knew what to say.  Sometimes I've been hurt by that, thinking that they don't care.  But I think I am coming to realize that it must be hard to talk about such a thing as cancer.  They all readily volunteered to be tested for bone marrow if it became evident that I might need a bone marrow transplant.  They just haven't said too much.  When I was first diagnosed, I don't think anyone knew what to say, so they said nothing.  I don't think I would have liked to hear, "Oh I am so sorry."  
     My internal struggles have mostly been my own.  Dan and I don't talk very much about it either.  It's always been like the elephant in the room.  I would say I wanted to make sure our will was up to date, and he would change the subject.  Because I was the music director at my church for so long, I would tell him that I put my funeral plans in our strong box.  Again he would change the subject, or would say something like, "You don't need to jump the gun."  And I never really argued that I needed to talk about things like this.  I was facing my mortality, but no one else was willing to do that.
     In hindsight, I could say well, I've dodged that bullet.  But I don't feel like that.  I think I may be harboring some sadness that I've really kept it all to myself.  I suppose it is a private struggle.  But there have been so many times I've wanted to talk about it.  To cry about it.  Even my kids would always say, "Oh, you are not going to die."  How sure they all sounded.  I am not sure if they said it out of fear, or if they really felt that way.  I certainly haven't.  I think I still need to have a discussion about it.
     I am cancer free. Yes.  And it is a wonderful thing God has done for me.  I am not really sure why I have been thinking of so many of these things now.  I wonder if this is normal?  I suppose that because I never had to have infusion of chemotherapy, or radiation, so much associated with cancer, maybe it didn't seem so life threatening to my family..  But every day I know that I must  take this large brown pill keep to me alive.  Literally.  Dr. Sood says I may be able to go off of it in 4 or 5 years.  But until then, I will rely on it to keep me cancer free.
     I guess I am reflecting on feelings that have been near the surface of my mind now because I am not sure that my brain has really realized that I am cancer free.  Tomorrow I will walk with many other survivors, in the survivors lap of Relay for Life.  And then Dan will join me in the caregivers lap.  I am thankful.  I am still overcome with emotion.  Perhaps I will cry.  Perhaps I will feel like jumping up and down.  Perhaps I will just walk and reflect on this miracle God has given me this week.  Peace.

I am cancer free!

     I have wonderful news.  I have been to Dr. Sood's this morning and my test results show "no active cancer cells present".  I am overcome with emotion.  Tears have been flowing on and off for over an hour now.  No cancer cells.  I have a "complete molecular response".  I have waited 3 years for this.  It is a complete remission.  I have been so nervous about this appt.  My numbers have always gone up and down, never making it down to this level.  Although I discussed my increasing side effects from the Gleevec, it doesn't seem to matter right now.  He says if I stay in this state for 3 or 4 years, I may be able to go off the med completely.  It is a hard thing for me to grasp.
     Yesterday I was so anxious.  I don't know how I would have reacted if my numbers had gone up again.  I have been praying for this day for so long, it seems part of my mantra.  Every day I wake up and wonder how I will feel well, or if the cancer cells were growing.  I am not sure how I will feel as the days go by.  I suppose I will once again get nervous in 3 months when I go for another blood check.  But I feel pretty confident now.  If there are no cells present does that mean there really are none?  I am thanking my Lord and God.
     There have been so many thoughts and pleas, and resignation, and hope.  Hope.  Today that prayer has been answered.   I am so thankful that I have my faith.  It always sees me through.  Things don't always go as I would have wanted, but these struggles I've had throughout my adult life have had some reason.  I wonder as these new days go by if I will find that reason or if I will have to wait until I reach heaven to find the answers.  It is a feeling of elation right now, and I am praising my God that he has seen to it, that for now anyway, I am given a reprieve from this horrible thing called cancer.  Will  continue to worry?  Yes of course I will.  But I am taking this day as a victory.  Today I am a survivor and I realize that I am indeed surviving.  I will walk in the Relay for Life on Saturday.  I think my emotions will be different this year.  I have acknowledged that I have cancer.  Last year I felt like a victim.  It was an unreal experience to be walking in that crowd of people who all had cancer.  I had had it for 2 years then, but I did not belong in that group of walkers.  I cried all the way around the track.
     This year will be different.  I think I will feel more like a survivor.  I hope that this grateful feeling that is warming my soul will continue.  I want to fly.  I want to celebrate.  I want to shout it to the world.  I AM CANCER FREE.  I didn't think I would ever be able to say it.  But I am.  I am cancer free.  I feel at peace today.  Thank you my God.  I wish peace for any of you reading this.  Thank you.

What is going on in my body?

     Another day brings another mood change.  My head is screaming "You should still be feeling great!", but my body is fighting with my head.  I have aches and pains.  They have been with me for 3 days now.  Left over pain.  Back pain.  Leg pain.  Stomach pain.  A slight fever.  This happens every so often.  I don't know why, and I do not like it.  Because my cancer check up is on Wednesday does not make it any easier to deal with it. There is that niggling feeling again.  Is it the cancer.  I don't think it can be.  Could it?
     I have been very teary.  Crying at nothing special.  Is it stress?  Perhaps I am more nervous about this check up than I usually am.  I cannot seem to think of anything else.  Do others feel this way?
     It is at extreme polar opposites that mood changes.  I suppose this goes hand in hand with people with cancer.   I would like to know some people that struggle with this.  I am not one to openly complain about the emotional side of this beast inside me.  If someone asks how I am doing, I am apt to say that I am doing great.  Or if there is some little physical ailment, I might say something about that.  But never about the emotional ups and downs.
     This weekend, I was pretty much alone.  My husband Dan works in marketing at our local telephone company.  Every year they have a memorial golf tournament in honor of the founder of the phone company.  It is held about an hour from here.  It is all encompassing for about 2 weeks leading up to it.  The tournament is today.  He stayed at the resort  last night to be able to be up very early this morning to get things going.  And he doesn't even golf.  I helped with much of the busy work that needed to be done.  While he was running around yesterday gathering items he would need to take with him, I was home alone.  My son Daniel, who still lives at home, is not home more than he is, yesterday he was out collecting donations for the fire department which he is a volunteer fire fighter.  My middle son Ben, who is  a chief at the fire department stopped over for about a minute.  He too was out collecting.  So I really was alone.  And I was lonely.
     Very lonely.  I cried.  I didn't feel well, and I felt... sad.  I think sometimes it is being alone that brings to mind all the what ifs.  Too much time to think.  To much time to dwell.  I have been doing gardening for the last few weeks.  Something I have not been able to do in the past few years.  I love doing it.  But because I am not feeling up to par, I haven't been able to do much.  I seem to wander from the porch to the back patio, to the sofa, to the computer.  I am at loose ends.  It would be so nice to have someone to talk to when this loneliness descends upon me.  I love my God.  But during these dark times, I do so much questioning.  I know he is doing this for some reason, but it is a time when I do not understand and I get a little angry.  More sad really.  I feel that I do not have a say at all in my own life.  It feels like I am crippled somehow.  I suppose it is a bit of depression.  Something that I must be aware of and fight against.
     I am pretty sure this will all go away after I visit the doctor on Wednesday.  He will hopefully tell me everything is fine, and my mood will miraculously lift.  But until I hear it, I will be sad, and lonely, and a little less peaceful.  I wish you peace.

Today is my 3 year "anniversary".  I was diagnosed with Leukemia.  I had cancer.  I still have cancer.  I had to correct myself with one of my piano students yesterday.  I said, "It's 3 years since I was diagnosed with cancer..... no, it's 3 years since I've been a survivor."  It's funny how, even though I know I am a survivor, I still see this date as a life tilting event.  It was the day I found out I had cancer.  Today I still see it that way.  I still have a hard time thinking of myself as a survivor, even though I am.  I wonder if other people think of their anniversary's the same way.  In some ways, it seems like a lifetime ago.  And then it feels like only a flash and it's three years.  I wonder if time will distance it .  I doubt it.  I have that three month check-up to bring it right up to  today.
     I had my blood drawn on Wednesday.  It was a non event.  Just a simple vial of blood.  It will be sent out to a lab and be back in a week.  In that little vial, it will show if I am continuing on a good path, less and less active cancer cells, or if the cancer cells are once again multiplying.  I wonder if having a blood cancer is different that having another form.  I don't know too much about that.   I know that all cancer patients, survivors, have to be tested periodically.  I am sure there is that same fear that accompanies it.  But I wonder if they need to be tested often.  I also wonder if I will ever get to the point where I will be able to go for longer periods of time without having to be tested.  I know other people at the 3 year marker have reached that point.  They go every 6 months.  I hope that I too will get to that.  My numbers never seem to stay at an even level.
      Something else that I often think about is how I even got Leukemia.  I have some research on the subject and am disturbed by what I have found.  Because of my long history of back surgeries, tests, MRI's, CT scans, x-rays, nuclear tests, medications. I wonder.  I have had way to much radiation in my lifetime.  It is a possible cause for leukemia.  It may be the reason that my chromosomes mutated.  That is a very scary thought.  While  the damage is done, I often wonder if I could have done anything differently.  Had I known what could have happened, would there have been some other way to treat me?   Would any of the many doctors I've had, ever put together the treatments to the threat of too much radiation?  I suppose it is all hindsight now.  What's done is done.
     I should look to the future and not look back.  Sometimes it is very easy.  I know that God has blessed me with good health throughout my cancer.  I could have been much, much sicker.  I also know that as I look to the future, I have to believe that God will also see me through whatever he has in store for me.  I know that on the days that I do not feel strong, he will guide my thoughts to the graces he has bestowed upon me.  My wonderful family.  My husband that works too hard, who has never said a negative thing about my mood swings.  My children who never thing of the negative things that can happen.  They tease it off.  Like last weekend when I had a vomiting episode.
     We were at  their Grandma's.  I had to vomit and went into the bathroom that had a window  overlooking the porch where everyone was sitting.  When I reappeared, my middle son, Ben, groaned, "You puked in Grandma's toilet?  eeewwww!"  After a good laugh I excused myself and went home.  I didn't want to gross them out again.
      The kids are always making light of my cancer.  "Don't say cancer", or "Oh you will be FINE!" "Just get up and DO something".  Always in a joking manner.  It lifts me.  It makes me believe that things are alright.  I know that they are aware of the seriousness of CML.  But they are forever hopeful.  It keeps me grounded.  It keeps me hopeful.  It gives me peace.
I wish you peace.

     That thing about being a survivor?  Well, it is still hard for me to think of myself that way.  This morning I went for my blood draw.  I go back a week from today to get the results.  I also had blood taken for my hormone levels.  I'm not sure if I ever mentioned in the past, the trouble with my thyroid.  Well, the nodules on my thyroid. 
     About 6 months ago I went for a routine ultrasound of my thyroid.  I've had nodules on it for years, but this test showed some growth, and so I was sent for a biopsy in Feb. or March.  There are nodules on both the right and left side.  One side was benign, but the other side was inconclusive.  I have to go for another ultrasound in August, but my oncologist is checking my hormone levels now.  It is always a bit unnerving.  I do not know how things will go from day to day, let alone month to month. I now have to wait a week for my Dr. visit.  I am feeling fine.  Great in fact. I've lost about 25 lbs.  I've been walking and gardening and eating right.  I should be thinking everything is fine.  But I don't.  I need to see the report and know that those cancer cells are gone.  I hate cancer.  I hate having to take medicine everyday.  And I really hate having the feeling that for the rest of my life I will have to worry about it!  I know my doctor has said that some CML patients are at a complete molecular response, meaning that there are no visible active cancer cells in the body.  I have never had that.  So every three months I wait for the graft that I see will be down at the bottom and in the "green" zone.  I wonder how others deal with this?  I would love to have someone comment on this.  Do you have  this nagging feeling that never seems to go away?  How do you live with it?
     I have that survivor in me.  It's just feeling a little weak right now.  The Relay for Life event is Saturday.  My anniversary is June 6th.  3 years.  I will walk in the Survivor's Lap.  I did it last year.  I cried all the way around the track.  I am hoping that this year I will feel more like the survivor I am.
     God is listening and I am sure he has my life in his hands.  I know there is a reason, and I've said it before.  I may not know the reasons, I may not even like it, but one day I will know why.  I am lucky.  I am blessed and I have no right to complain.  So, so many others have suffered much more than I have.  I have had very little side effects.  I think my "suffering" is more mental.  And I know I should be able to think of these times of nervousness more positively.  I should be able to offer it all up to God.  And I do.  It's just that it doesn't really make the worry go away.
     I know that in a week all will be well again, and I can stop worrying for 3 more months.  This gives me peace.  I wish you the same peace.
 

     I am so very blessed.  Some days when cancer is in forefront of my mind.  Today I just feel blessed.  I worked hard this morning in my back yard.  I am tired from that work.  Digging in the soil and planting new flowers.  How can I not be blessed?  Now it is raining and watering these new plants.  Water from the heavens.  Yesterday, I had a reaction from my chemo med, Gleevec.  We were at my mother--in-law's for dinner.  I had taken the gleevec before we went.  I didn't realize untill I started to feel sick that I hadn't eaten any lunch, just a plum.  I had to  excuse myself to the bathroom to vomit.  One of those things I should know better.  I went home, took a zofran which helps with nausea and vomiting.  I was sleeping by 7:30.  Little side effects that I must endure.  A small sacrifice to being alive.  Being alive.  I am fine.  I am a survivor.
     I go on Wednesday for my 3 month blood draw.  Then next week I will have my Dr. appt. and get the results.  These few days are worrisome for me, but I am feeling good.  I have lost 23 lbs. so far, 32 more to go.  I feel healthy.  I am praying that all will be well.  God has been so good to me.  I have to sometimes  stop and remember this.  I can get caught up in my physical ailments and feel sorry for myself, or want the pain I have every day to just go away.  It can make me sad.  Too many back surgeries.  Too many surgeries.  I saw a woman at church yesterday.  She asked how I was doing and I told her I am great.  She said, "You sure have had it my dear."  I told her "We are resilient."  Her name is also Barbara and she has had physical limitations as well.  She agreed with me and we laughed and I told her we really didn't have a choice in the matter, so we must just keep on keeping on.
     I have a feeling of contentment that I haven't felt in such a long time that it almost scares me.  I am afraid something will go haywire with my health.  Or that this feeling will not last.  I guess it is because something has always gone  wrong.  I have not been in the hospital for over a year.  I feel that I have passed a milestone.   One of those mountains that I've reached the top of.  The only question now is, will I stay at the top, or will I fall down again.  God is with me.  He always has been there.  He has given me a certain hope for the future. I feel peace.  I wish you too this peace.