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.

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 fooling?  Of 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.
 

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.

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.
    

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.

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.