Thursday, October 23, 2014

It has been over a month since I have blogged.  A few reasons why.  Sometimes I just cannot summon the strength to write.  I wish I could be cheerful and have something wonderful to say.  Something with a purpose.  A good reason to  be writing.  Lately though, I have been sick with a nasty cold, had a thyroid biopsy of which I am still awaiting the results, and then last week, I turned wrong and have been on my back since last Saturday.  I have been taking oxycodone and a muscle relaxer, along with the prednisone my Dr. prescribed.  I am over tired.  I have had to cancel my piano lessons for the week.  And my sister's husband's 22 years young passed away this past Saturday.  I wasn't able to attend the wake or funeral, or even go to the house just to show my respect.  I feel guilty about that.  My husband went.  We sent food.  I just feel I should have been there.  I am finding it a difficult time to pray properly.  I speak with God all the time. I think.  But I am just feeling tired.  Very very tired.  I want to feel well.  I have gone through this back and leg pain many times, but it has been almost a year or longer since I've had an episode.  I think I may be feeling so blue because when I think of the past year, I have been around and around.  At the beginning of the year I was feeling great.  I felt great all the way until July.  Since July, I have been in the hospital for infectious colitis, had a horrible cold with a cough that wore me out, my white blood count is getting too low, and now this with my back.  I would love to have an entire year of good health.
     I just cannot seem to go through a long period of wellness.  It has been making me come close to depression again.  Or I may already be there.  I am thinking that I need to call my counsuler.  She has helped me in the past.  In fact, she called me in May just to see how I was doing.  I was doing great.  I remember telling her I felt well, I was healthy, and my relationship with Dan has improved 10 fold.  I write when I am upset.  I am struggling now and I ask God to help me, and then I feel guilty for asking for help because I think I should be able to help myself.  I know God is listening and there is a lesson here for me to learn.  Perhaps I need to let go let God.  Yes, I think so.

Thursday, September 25, 2014

More distressing news.

  Well, having blogged already once today, I thought my blue day would go away.  I am starting to cough less, the sun is shining, and I have my dinner on the stove ready to cook for dinner.  Shortly after taking my shower this morning, I received a personal call from my doctor.  The second in a week.  It looks as though the thyroid ultrasound I had a month ago, once again looks suspicious.  He talked with the doctor from Windsong who did the biopsy and they both agreed that I need another biopsy.  He also told me that if the nodule needs to be removed, they would have to take out the lobe of my thyroid.  And if it is cancerous, I am not sure what that means.  Radiation?  Who knows.  I am working myself up into a nervous wreck.
     Just as I was writing this morning about my emotions, I find that I am starting to feel frozen.  I don't want to worry.  But I am worried.  And tired.

My Cancer story is not Exciting.

     I don't seem to be a very interesting blogger.  I have a few views.  I suppose my life is not so interesting.  But that is all right.  I am not famous.  I haven't really done anything outstanding.  My cancer story is not all that exciting.  But, it is my life, and I am compelled to continue to write about it.
      Having had over 15 back and neck surgeries, it was a very long time ago that I felt "normal".  I was in my 30's, had 3 small children, and was working full time.  I was at the height of my organ playing.  We have always struggled with finances, but we were happy.  My baby was 18 months old when I had my first back surgery.  I could no longer hold him.  That has been one of my biggest heartbreaks.  I feel like I cheated him of my physical contact.  But then, he was the one who used to come lay in bed with me and cuddle.  We would listen to soothing rainforest CD,s and he would fall asleep.  Dan would come and put him to bed.  It was a nice time, but it was also a sad time for me.  I think my older two didn't get thef physical expressions of hugs and kisses.  I was terrified of them running into me or jumping into my arms.  It has taken a very long time for me to realize that because of that, my children are not all that touchy feely.  They don't like to be hugged and they make no bones about it.  My daughter, who is several states away, after not having seen me for over 6 months, did not give me the hug I so desperately needed.  I jokingly hugged her, laughing as she said, "You know I don't hug, let me go", she was laughing, but it hurt.
      I have been thinking a lot lately about my own emotions.  Before I had cancer, I was depressed and was seeing a counselor.  I worked through the black spots.  And I was feeling well.
     Then I was diagnosed with CML.  My entire outlook changed.  I remember the immediate fear of the future, and the terror of what having cancer meant.  Once I started treatment I began fighting.  I decided that I wasn't going to die, although I had started planning my funeral.  I told people that I was doing great.  My numbers were going down and I was feeling good.  Even when my numbers went up I did all the research on bone marrow transplants in the event that I would need one.  I was a fighter.  I remember even telling someone that I don't think I would change anything if I could erase the cancer.  Who was I foolingOf course I would not have cancer, given the choice.  
     So, I have these conflicting emotions all the time.  It is tiresome.  I am battling a nasty cold and have been coughing for a week now.  I seem to get sick every other week.  It is depressing.  But I keep moving.  The day to day life of this cancer survivor is not exciting.  There is no special story, no heroics.  Just a boring day in the life of me.
     As a blogger, I may not be so great, but I will continue to blog and perhaps I will find something in my life that may spark with someone reading.  I pray you peace.
 

Tuesday, September 23, 2014

I love my music.  It soothes me.  Every day seems to bring another physical ailment, but I always have my music.  I play piano, and time seems to vanish.  I love classical music.  But lately, I have been looking for something else.  Not so much contemporary, but, something...  I suppose it kind of makes sense that I am at loose ends with my music.  Because why?  Well, I am at loose ends with my health.  Not knowing from one day to the next will be ailing me.  I cannot seem to find a happy medium.  I started my fall piano lessons 3 weeks ago, and I am already sick with a nasty cold.  It is such a tiresome thing to have a compromised immune system.  The thing I love to do, teach music, play music, listen to it, feel it.  I think I cannot find the soft place I want to be right now because I cannot seem to feel well for more than a few days at a time.  Even sitting at the piano this morning did not bring me any joy.  My hands would not move the way I wanted them to.  It is a frustrating thing.  My mind is tired I think.  I have been coughing for 4 days now, and my body is tired.  It is at times like this that cause me to think negative things.  I feel that depression of a black hole moving closer to me.  I should be fine.  I should be grateful, and thankful for my life, and the fact that God is probably just testing me.  I know I should be praying, and thanking God.  I know I will be fine.  I suppose I need to listen to some calming music.  I need to calm my mind and feel peace.

Friday, September 19, 2014

Cancer???? Again????

It still surprises me when I think about cancer.  I will goes days at a time and not worry or may even not think of it more than once or twice a day.  I doubt that there will ever be a day when I do not think about it, but I sometimes do not dwell on it.  And then something happens and I feel as though I am sucked right back into "I have cancer".  And I struggle to say, yes, I am a survivor.  Some days it just doesn't feel like it.
     I went for my 3 month blood draw and check up on Wednesday.  Everything was fine, I am still in complete remission.  I left there without the dread that sometimes overtakes me on these days.  I am trying very hard to realize that this will be my life, for the rest of my life.  I will always have to be monitored, I will always have the worry, I will always wonder, what if...
     Yesterday was a pretty good day.  I am teaching piano again.  Lots of little sniffles and coughs.  This morning I am also sniffling and coughing. Now begins the worry.  Will this cold become serious, as almost all of my little ailments seem to be, since I've had cancer.  I have a not very good immune system.  I suppose it is time for me to start wearing a surgical mask when I teach.  I love teaching kids to play and enjoy music.  It never fails to warm my heart when a little one figures out that a note on the piano matches the note on the music.  They get "it".
     So yesterday went reasonably well.  I found out that I am 10th in the leadership board for the Light the Night  Event.  Our Stroll to the Park raised $1420.00.  I feel proud of that.  I am inspired to repeat this event next year and double that.  I also finally got my Gleevec order taken care of. I have been afraid for the last several months that I would have to pay up to $3000.00 for one prescription because of the insurance change from my husbands policy.  Well I finally had to fill the prescription and lo and behold, I still have a 0 co-pay.  That was a relief.  So all in all, I was feeling pretty good, except for being a little tired.  It's amazing how one phone call can change that easy relaxed nature.  I had finished teaching for the day and was just getting dinner ready, late, it was almost 6:30, and my doctor called.  Not the nurse, but the doctor.  I cannot remember the last time that happened.  That sent my head spinning in itself.
     I had a physical last week.  After a bout of infectious colitis, and 5 days in the hospital, I had a series of intestinal testing done, and was at the doctor's office to get the results.  I also had a six month ultrasound of my thyroid.  All the intestinal tests came back normal, confirming that it was indeed an infection. When he looked at the ultrasound, it took him a long time to let me know what was or wasn't going on.  One of the nodules that he has been watching has grown.  He was suppose to let me know last week sometime if I would need another biopsy. The one I had in Feb. had been inconclusive.  So when he spoke with me last night, I suddenly had a feeling of dejahvue. He told me that 2 nodules on the right side that had been biopsied were inconclusive, but the radiologist detected a 3d nodule and he wasn't sure if this one had been biopsied.  He is concerned because it is deep in the thyroid on the lower right side.  He said to remove it would mean part of my thyroid will have to be removed as well.  He said that he isn't sure there is anything to worry about, (where have I heard that before?) and to give him until Tuesday to see if this 3d nodule was indeed a new one or one of the biopsied one, or if this one had not grown in size.  It is all confusing to me and I have not been able to stop thinking about it.
     I feel as though cancer is sucking the life out of me, even if thyroid cancer is "highly curable". Really?  Really??  I am so tired of this seesaw of emotions.  After the doctor's phone call last night, my reasonably good day seemed to instantly turn into a new nightmare.  Remove my thyroid?  More medication for the rest of my life?  I know I am strong.  I know I will handle this latest setback with grace.  But sometimes, I just get so very tired.
     I will pray once again, or continue to pray, that God gives me the strength to continue this fight that has become my life.  I pray for peace.  And I pray you receive peace as well.
    

Thursday, September 11, 2014

A rainy day and gloomy news.

It is a roller coaster of ride when you have cancer.  When things are going well, it is a feeling of survivorship.  I can conquer anything.  I feel good and I have energy that seems to never want to stop.  I am feeling blessed, and so happy to be alive and have my wonderful family.
     And then there are those days when doubt creeps in.  I am tired.  I have no energy and it is a struggle to get through the day without crying.  Sometimes there is a reason.  Sometimes there is not.
     Recently I was hospitalized with infectious colitis.  It is a not too common infection that happens to people with compromised immune systems.  As I have always said, whenever I am "lucky" enough to get some odd illness, it is always because I have a compromised immune system.  And why is that?  Because I take oral chemotherapy everyday, because I have CML.  I was in the hospital for 5 days on heavy pain medication because my gut hurt so badly I could do nothing except curl up into the fetal position and pray for the pain to go away.  As the pain subsided finally, I had had an endoscopy, an ultrasound, and needles and pain meds, lack of sleep and tears.
     This is when the doubt creeps in.  Since being in the hospital, I have endured an Upper GI, which was an uncomfortable test, and a colonoscopy, also uncomfortable.  And then there was the six month check up of my thyroid with an ultrasound.  Always tests, always something to worry about.
     There were questions about Crohn's disease.  How could this be?  I blamed it on the Gleevec, although my doctors have said probably not.  The possible diagnosis for this hospital stay were many, pancreatitis, ulcer, or uclerative colitits, Crohns, intestinal blockage.  
      I visited my primary doctor this week.  All the tests have come back alright.  He says it was most likely infectious colitis.  Then he looked at the thyroid ultrasound.
     It took a long time for him to look up from his computer as he looked at the results.  I have known for almost a year that there is a possibility that the nodules that I have could be cancerous.  I had a biopsy last February.  I was checked on both sides of my thyroid.  The left side was benign.  The right side was inconclusive.  So waiting for this last ultrasound, I have not been too worried, because the doctors didn't seem to think there was anything to worry about.  I was told that I would be checked again in 6 months just to be sure that nothing was getting bigger or suspicious.  Unfortunately, when my doctor was reading the report from the radiologist this week, he looked up at me and said, the nodule on the right side has grown.  What does this mean?  Another biopsy.  I am not sure if I am more upset because this is yet another  cancer scare, albeit not as serious as Leukemia.  I am concerned.  I am worried.  I am a bit depressed about it.  I sing.  I have used my voice for many years as a Church Musician.  The growth, even if it is not cancerous, may grow and effect my voice.  It may be cancerous.  It may be nothing to worry about at all.  But worry I will.
     If I decide to have the nodule removed, I am told I will have to have all the nodules removed.  It may or may not affect my voice.  If it is not cancerous and I do nothing, it can still grow and it may or may not affect my voice.
     So, on this gloomy rainy day, I am at odds with myself.  I am trying very hard to not worry and just take one day at a time, and at the same time, I am worried sick.  I can feel the ever present depression coming a little out of the hole I have dug for it.  It is always a constant struggle to keep it down in that hole by itself.  But on weeks like this, the lid has come off and I can feel it there, just below the surface.  I know that I am blessed.  I know that I must keep praying and ask God to see me through this.  Sometimes I wonder if I will live a long time, or if God is readying me for something larger then me.  Am I meant for a bigger challenge, or is this the challenge?  It all is on my mind.  I just know that I must continue to ask God for guidance, and that he offer me peace in the midst of my personal turmoil.  A turmoil perhaps not a huge suffering in the scope of the world, but to me, it is my cross to bear.  I ask that God give me the courage and the peace to move in this world.  I wish you that same peace.

Tuesday, September 2, 2014

First Cancer, and now?????

     So I haven't blogged in  a while.  I've been sick.  Again.  I was in the hospital a few weeks ago with severe stomach pains.  At first they thought it might be from the Gleevec chemo med I take daily.  Then they thought it might be pancreatitis.  They ruled that out.  I was first in the ER on a Thurs. night.  They told me I had a UTI.  I didn't really think so because I have suffered from them often, and this pain was excruciating.  Then they did a CT scan and said it looked a little like Colitis.  They sent me home after giving me a very strong shot for the pain.  I couldn't eat.  I was running to the bathroom and then I couldn't go to the bathroom. By Sunday I was back in the ER and was admitted. I was there for 6 days.  I didn't eat anything solid at all, and barely even touched the jello and Popsicles.  They did an endoscopy and took a biopsy.  No ulcers, but some inflammation.  They also did an ultrasound of kidneys, empty gallbladder spot, liver, stomach, etc... Nothing unusual except a little inflammation.  
     I was living on dilaudid and water.  Finally, my gastroentorlogist  decided to release me, but scheduled both an UGI and a colonoscopy.  I've had the UGI.  There was talk of Crohn,s, not the first time I have heard this.  I was terribly sick after that.  The colonoscopy is scheduled for this coming Monday.
     And on top of that, I also had my 6 month ultrasound of the nodules on my thyroid.  They have been growing.  The last biopsy in Feb. showed that one side is benign, but the other side they couldn't tell.  So I am wondering if I will have to have another biopsy.
     It is a long list of complaints.  I have tried to keep positive.  Today, it is hard.  I am blue.  I feel that old depression creeping back in, and it scares me.  The summer was great until all this stomach problems popped up.  I am trying very hard to keep busy.  But on a day like today, with no one home, a humid, gloomy day, it makes me sad.  And I talked to my daughter in Virginia last night.  She sounded homesick.  It makes me cry for her.  I know she loves it there, and I know she is doing great as a Dr. of PT.  But I can always tell by the sound of her voice when something is not quite right.
     So, my dear readers, I have no words of wisdom, no happy dance.  I must just pray to my God that this too shall pass, and I will be healthy again, and be able to visit my lonely child soon. I believe I need some peace.  I wish you peace.

Wednesday, August 13, 2014

Living with a challenged immunity system

     So, I haven't blogged in a while.  I've been sick.  Again.  Last week I spent 5 days in the hospital for terrible stomach pain.  I spent much of the time on pain medication and fearing that my cancer had come back.  And then, the doctors thinking that perhaps the gleevec I take for my CML  was causing an ulcer.  They tested for panceratitis.  They did an endoscopy to look down into my stomach which was inflamed.  And then is the nasty colonoscopy I will have in 2 weeks time, and the UGI I have to have next week.  They aren't sure if it is an infection of some sort.  But they have said that they don't think it is the gleevec.  It is more likely that my immune system that is not very good, might have been compromised by an infection.  It is very distressing.  I was having a wonderful summer.  I am less then 2 weeks away from the fundraiser I am hosting "Stroll to the Park" here in Fredonia  to raise money for the Leukemia and Lymphoma Society.  I have pretty much been in a stand still pattern right now.  My gut still hurts, and I am having trouble eating anything solid.  
     So, because I have cancer, a whole host of problems have beset me even though at this time I am cancer free.  I seem to get sick much more often, and even a small thing like a cold will put a stop to my activity.  I won't say it doesn't get me down.  After all, I am cancer free.  But I will never be the same.  My emotions, too, run deeper.  I seem to be freakishly happy when I am feeling healthy, but it doesn't take too much to get me down when I am not feeling up to par.
     A few days ago the most famous comedian, Robin Williams died of a suicide.  There has been much written about depression, and suicide.  I don't think, that anyone who has not come to the edge can really understand how someone could do themselves harm.  I have been on that edge.  I haven't blogged about this aspect of my illness.  Having had health problems for the past 20+ years I first felt depressed after the birth of my youngest son.  It was post partum depression, and as embarrassed I felt, I sought out help.  I was always frozen.  I was afraid to leave the house with 2 Catholic School children to get them to school.  I couldn't seem to get out even to get milk.  But I sort of understood what post partum was because the nurses at the hospital were very helpful and helped get me into counseling .And then I felt better.  It wasn't like the depression that happened sometime during one of the 15 surgeries I have had.
      There were several times when depression has almost beat me down.  It is a very strange and hard thing.  I wouldn't say I was suicidal.  I just wanted to escape.  I didn't want to do "it" anymore.  I felt useless, unworthy, and that no one would really mind if I just escaped.  Many people have said it is like a big black hole that tries to swallow you up. I think that is true.  And I am a very faithful person.  I know God exists.  I know he has unbounded love and understanding.  I just couldn't understand why this was happening to me.  I would get angry.  I have always questioned, but not angrily like that.  I was the one always saying, "we will know all the reasons when we get to heaven".  But that sad feeling.... it is a terrible lonely feeling.  I would go about my day mechanically.  But I will never forget the evening I was laying in bed, back pain racking my body.  I looked on my nightstand at all the medications I was taking, including an antidepressant.  I picked up a bottle of pain pills and counted them out.  I wondered how many I needed to take to escape.  It was always, escape.  I stared at it for a long time.  I think I may have even taken 3 pills.  At least I would sleep well that night.  I remember putting the bottle down, and just giving up.  I told God to help me.
     That was when I started seeing Dr. Krasner who specializes in people with chronic pain issues.  Apparently, it was not all that uncommon for us to be depressed.  I do not remember how long it took for me to start to feel better.  I had many issues with Dan, probably exasperated by  a lot of non-communication.  I just didn't talk about it.  I kept it all inside and blamed much on him.  I know that we did have marital differences but while I was feeling worthless and hopeless, he didn't talk to me.  He didn't encourage me.  In fact, there are times now that he responds to me in anger.  Last week when I needed to go to the ER, he practically yelled at me that I couldn't keep going there.  I know he felt bad after that when I was admitted.  That is just his coping mechanism.  Not mine.
     And I have to fight that black whole feeling all the time.  This last few weeks have been tough.  I was having a wonderful summer.  We were busy.  I was gardening, picnicking and just enjoying every day.  And then when I started to feel sick again, it is almost as if I were a balloon and the air has been leaking out a tiny bit every day.  I think blogging is a good thing.  If you are reading this, I hope that my sometimes disjointed thoughts don't seem too wandering.  I am still new to this type of writing.  But I started this entry talking about how my immunity system is not very good at all, and it all seems to lead back to the fact physical pain for me can quickly spiral into depression.  I wish this weren't so, but I have a strong sense of being.  I am able to cope.  Music helps a lot.  It brings me peace.  I wish you peace.

Saturday, July 26, 2014

What its like to be cancer free, month one.

    So it has been one month since I visited my oncologist and was told there are no active cancer cells detected.  The first week, I was busy telling everyone, "I'm cancer free.  I am so happy."  The second week I was still reeling and so happy.  It was a sort of I believe it, no I don't believe it.  The third week, I got a cold.  I was miserable.  I lost my voice, I had a low grade fever, and was having horrible night sweats.  By the 4th week I was sure that I was relapsing. What are the symptoms of a relapse?  Tiredness,(I slept for days), low grade fever, night sweats.  Then I started to feel better.  But I was still very tired and was now dizzy.  I could hardly stand.  Two weeks later, and here I am with a bad case of vertigo.  Phew, just a cold and vertigo.  Am I still cancer free?  Who knows.  I don't see the Dr. until September.  I am thinking logically that everything is fine.  In my heart I am still wondering, are there some cancer cells again?  It is very disheartening.  I wonder if it will always be like this.  I know that because of the chemo medicine I take I will always be susceptible to infections.  I am not so sure that I will ever breathe easy.
     But I am moving forward.  One day at a time.  I am taking action to help raise money for the Leukemia and Lymphoma Society.  And this is exciting to me.  My event, "A Stroll to the Park" is coming up on August 22nd at 7pm.  I am getting lots of positive feedback and I am thinking it will be a bit (a lot) bigger than I first thought.   Our little stroll will take place at our local Farm Festival and people can walk with us for a $10.00 registration/donation fee.  The posters are being printed as I write, I am getting some sponsors (hopefully enough to be able to get tee-shirts), and the donations are starting to come in.  It is a simple thing.  A walk, a slow stroll, lighting the way with luminaries and a small ceremony in the park's gazebo.  My honorary chairperson has written her story and I will get that shortly so I can write an article for our local newspapers, and radio.
     I am amazed at how it charges me  to be doing something so worthwhile.  Three years ago when I was first diagnosed with CML I held a fundraiser called "Comedy for a Cause".  I have a cousin who is a comedian, and we had a great benefit and raised over  $2500.00.  I felt the need then to do something to be actively involved in finding a cure.  Then I was sick and didn't feel up to doing anything.  But this year, this good news of being cancer free has compelled me to become active again.  And it feels wonderful.  God has been so good to me.  I know that every day I breathe and enjoy another beautiful day is a blessing.  With all the fears, and all the concerns that come with cancer, I know there is always God.  It is my soft place.  My mind relaxes and calms me.  My God calms me and my soul is still.
   I wish you the same peace.

Tuesday, July 8, 2014

I need to help.

     It has been a month since I was declared cancer-free.  I am still over the moon about it.  I feel good.  I am not sick.  And my never ending back problems are not bothering me right now.  Life is good.  So I feel the need to do something.  And I am.
     Three years ago when I was first diagnosed with CML I felt the need to do something.  So I had a fundraiser and raised $2500.00 for the American Cancer Society.  It was "Comedy for a Cause".  I am fortunate to have a cousin-in-law who is a comedian, and so, we had a Comedy night with a basket raffles.  It went fantastically.  A few days after that, I was in the hospital because my kidneys had shut down.  I am not sure what caused that, but it may have been a Gleevec(chemo med) side effect.  I was very sick.  I felt very much the victim.  I didn't want to do much of anything.  As the first and then the 2nd year came around, I felt in my head that I wanted to do something again.  But I didn't.  I didn't want to get sick again.  One probably didn't have anything to do with the other, but my level of energy was not so great.  So, earlier this year, and if you have read any of my blogs, you will know that I had an epiphany.  That I was a survivor, and didn't even realize it.  And then, in June becoming Cancer-free, my energy level is very high.  So I am doing something.  I want to help.
      The Leukemia & Lymphoma Society has a host of events every year called "Light the Night".  Cities around the country walk in the evening and raise money for research and a cure for blood cancers.  They 'light the night" with lanterns and luminaries.  I decided I could manage a mini "Light the Night"  event.  So I am having a "Stroll to the Park".  Each year, our community has a village wide festival called the Farm Festival.  It is held the 3d week of August and takes place in the downtown parks.  There are crafts, and farmers markets, food and fun.  So my event will start in the parking lot of a local church.  Hopefully, we will sell enough luminaries to light the sidewalks from the parking lot to the gazebo in the park. There is a $10.00 registration to walk, a donation really, and we will carry lights to bring awareness to blood cancers. I have a friend who had lymphoma and a bone marrow transplant who will be our Honorary Chairperson.  We will stroll with balloons.  We will share stories.  We will wear red and white.  And when we get to the gazebo, and there will be many people there in the park, we will hold a ceremony, a moment of silence and a celebration.  I do not know how many people will take part, but I feel good about it.  Anything I can do, will be a really good thing.  If you are reading my blog, I ask you to say a prayer that this will be a huge success, and that we raise lots of money.  And that we support those who have or have had, or have had a loved one pass from any of the blood cancers.  
     I know God will be walking with us.  I firmly believe that all things happen for a reason, and although I may not know what all those reasons may be, this little thing I am doing, will have an impact.  Even if it helps only one person, it will have been successful.
I wish you peace.

Friday, June 27, 2014

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.

Wednesday, June 25, 2014

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

Monday, June 16, 2014

     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."

Friday, June 13, 2014

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.

Wednesday, June 11, 2014

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.

Monday, June 9, 2014

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.

Friday, June 6, 2014

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.

Wednesday, June 4, 2014

     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.
 

Monday, June 2, 2014

     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.

Friday, May 30, 2014

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.

Wednesday, May 28, 2014

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

Tuesday, May 27, 2014

     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

Monday, May 26, 2014

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