Cancer and Christmas

Tis the season, Merry Christmas and Bah Humbug...I have been in remission for a couple of months.  I have had extreme pain in my joints and every part of my body. I called my Lupus doctor and he had me take a lot of tests.  My family has had a boat load of trials lately. So many that I am praying all day long for help. My faith is strong and some prayers have been answered.  But not all have been.  The most serious ones are still waiting for the grace of God.  I am afraid.  My cancer has come out of remission and it is not a worry for me.  My fears are for greater than my health.  I can't seem to find the Christmas spirit.  I usually love this time of year, but this year my worries and problems have seem to have taken over the joy.  I miss the Christmas's of before.  The times when my kids were little, my mom, and brother were alive and we would have huge Christmas Eve parties.  Tons of food, friends and fun.  Now kids are grown, and have extended family where they go to spend the holidays with.  My mom and brother are only memories.  I have a new husband and he is a gift.  He is kinder and more loving than I have ever had.  The worries over his health, have engulfed me.  I want to find the Christmas spirit but somehow it escapes me....

Expectations

Life is full of expectations.  When you open a jar of pickles you expect that pickles will be in the jar.  It works the same for people.  If you get to know a person, you expect certain behaviors and actions from them.  People do change, but fundamentally they are the same at their core.  They have been shaped by life so they might not party as they did in their twenties but  their core values are the same.  The mistake I have found is that I like consistency.  I know my life has thrown me some challenges but I adapt and move on.  I have lived with cancer and illness for so long it is a part of who I am.  I can't change that.  I know I will wake up in pain, have sleepless night and until the Good Lord takes me will be under some sort of treatment.  I currently am on chemo and I have adjusted to being extremely fatigued and know that I can become sick to my stomach at the drop of a hat.  It does not serve me to live with pity.  My lot in life is that I have cancer and I have to find a way to exist with it.  I may not like having a port in my chest because it hurts sometimes but I know it is better than a nurse digging for a vein.  
  I once lived in fear, regret, depression and darkness.  I blamed the world and God for my illness and my bad choice of an ex husband.  I chose the man, I chose to not leave yet I was depressed because I did not have the marriage that I had dreamed of.  I was angry at God for all the illness and the cancer.  With all the anger I became depressed and I lived in darkness.  Sadness was a daily part of my life.  One day I could not take it any longer and I left everything behind and left my ex husband.
I still was depressed because I still had cancer but now I was poor and struggled to get by.  Things got better when I sought out help with my emotional state and I started helping those who lived in homeless shelters.  It opened my eyes that some had it worse than I and it made me grateful for what little I had.  I accepted that cancer was a part of my life and though it was not easy, I was still alive to be a part of my children's lives.  Slowly I let the darkness and sadness leave me and replaced it with joy and thankfulness.   There were mistakes along the way out of the darkness, but I still was able to finally see the light at the end of the tunnel.
 A few months ago I was told I had to begin chemo because the cancer had returned to my lungs.  I was going to be on a different chemo drug and was told of the side effects.  One of the side effects was losing my hair.  I had lost my hair before but this time it did not come out the way it did before.  It came out in patches and the high doses of steroids cause me to gain more weight.  Before the chemo I had started on a weight loss program and had some success.  Now I was patchy bald and could not stop the hunger.  I gained weight.  Looking at myself in the mirror was not fun.  My self esteem took a hit.  To top it off my relationship was beginning to suffer.  The once shared intimacy has gone.  That also made my self esteem feel  more vulnerable.  There is no one better than I  to understand health problems, and I understand the other person having health challenges.  What I don't  understand is how the romance disappeared so quickly.   I want intimacy.  I want to snuggle, kiss, feel the embrace we once had.  Instead it was as if I  in a intimacy desert.  The surprising part was not only intimacy has gone, but also the desire to do things together left.    I asked to do things and it was shrugged  off.  Small arguments are now a part of our lives.  I am feeling like I am losing myself into a pool of self pity again.   Depression is creeping back into my life and I am afraid of becoming lost in it again. 

Smile and the world thinks everything is ok

What lies behind a smile?  Happiness, joy or is it a mask to hide the feelings you don't want anyone to see.  I am an expert at keeping my feeling hidden inside.  I smile, say what is expected but it is just a mask that I have developed.   No one really wants to hear the answer when they ask "how are you?" It is a phase that is a social statement but truly they don't really want to hear the answer. 
  My feelings are easily hurt, I carry a lot of pain from the past and fear for what I am going thru now.  On the Cancer board yesterday there was a sign that said "Cancer is lonely'"  It truly is.  On YouTube you will see videos of cancer patients who have friends gather and shave their head in solidarity with the cancer patient,  It contains inspiring music, tears and a happy message.  In  true life, that happens in 1 in 100 people.   I have been in this battle for a while and though I have friends and family, I still feel lonely.  I spend hours on end by myself with the company of our cat.  Days, weeks and months go by that I don't hear from my close friends.  When they do call there is always with the promise that we will get together soon...I have learned to smile and say yes soon but know inside that it is not going to happen.  People are busy with their own lives and don't have the time to take the time to fulfill the promise or their word.  I look forward to the weekends, but they have been lonely too.  Staying home all the time and with plans that never come to be fulfilled has become a norm.  I hide behind my mask...smiling and saying everything is fine.  Cancer is not only lonely it just plain sucks.

Powering thru it

Chemo sickness can not be explained in words. It is the most dreadful sickness than you can imagine.  It is like having your insides turned inside out.  You know you need to eat and drink and your body does not want to cooperate.  Gagging at a drink of water is not normal.  If you take the anti nausea drugs, you become constipated and that leads to more problems.  It is an endless cycle of sickness.  Today I am trying to power thru the sickness without the drugs.  I am forcing myself to eat and drink and hoping to God that I don't lose it.
I even put food in the crock pot for dinner so my husband will not eat cereal for dinner.  I will not let cancer stop my life.  I can't let it stop it.  I am determined to get past the bad part and find my way on the healing path.  So I eat protein like eggs and cheese and yes toast, because I love bread, I will power thru this sickness.  I will be better.  I have to be.

Day after chemo

Yesterday was my second chemo session.  My husband and I travel the long journey to the hospital and see the oncologist and then I am ready for chemo.  I have a favorite nurse and am lucky that I get her again.  She sprays a freezing spray on my chest where my port is.  The spray is cold.  It becomes stinging cold when she says take a deep breath and pokes the IV into the port.  It is flushed and the Benadryl bag is hung to begin the eight hour chemo session.  Not sure why but have been emotional with this chemo.  I know I shouldn't compare my journey to another person but I do.  My friend has just completed her chemo and radiation.  She has had to have follow up surgery and is recovering.  Her friends have been very supportive of her.  Each day during her chemo and days after her friends have brought meals and have offered assistance.  She post on FB that she needs a ride to the doctor and many are there volunteering.  On the recent Relay for Life, many people walked in name and posted picture of bags and balloons with her name on it.  She had breast cancer and was just told she is cured.  The support for her and her family is something amazing, like out of a lifetime movie.  I am a bit jealous and ashamed that I am.  My husband does all he can for me, but I spend my days alone.  No one comes to bring meals or to visit.  My family lives a few hours away so I only saw them once last month.  This journey is lonely. 

Rough day

Some days it is better just to stay in bed and bury your head under the covers.  Not sure why I am emotional today.  Perhaps it is because Mother's Day is coming and I miss my mom and had she been alive her birthday would be just a few days away.   
  I have been slowly getting out.  Sitting at home with just the company of the cat, my laptop and TV is lonely.  This morning, I woke up at 4am.  I just don't sleep and have not slept since I was diagnosed with cancer.  After reading my own blog I realized that is when the no sleeping pattern started.  I usually get up, fix myself a cup of coffee and read emails and check Face Book.  Today I opened up an ETSY store in hopes of selling some artwork to help with costs of going for treatment and blood tests.  My laptop froze and when I tried to bring it back online, it would not give me a screen.  I kept restarting it and nothing.  Finally somehow I got one window open and have been using it, but it is sick and is going in for repair tonight. 
  Yesterday I went to the grocery store for some food items I needed for dinner.  I don't wear a wig or scarves because they are hot.  I have been using a head band, wearing earrings and make up so I don't look too out of place.  At the bakery section I had the feeling that someone was staring at me.  I could feel it.  I turned and there was a woman in her 50's just looking at me.  I smiled and turned around.  That feeling of being stared at stayed with me as I slowly walked down the aisle.  I looked again and she was next to me just staring again.
She asked if I shaved my head on purpose or if it fell out.  I said it was a side effect of chemo.  I was a little unnerved.  She then stated I should cover my head.  I just walked away quickly and headed for the check stand.
  My stalker was right behind me.  She kept asking questions... I tried to ignore her and to be polite.  She then asked me if I was contagious.  I said no, she was more of a danger to me then I was to her.  She had to say again that I should cover my head, she felt it was disturbing was her quote.
  The comment stayed with me.  It hurt my feelings and I could not believe the ignorance.  When my laptop started to go out this morning I got sad.  I use this as my lifeline, my dairy...so having said that.  I hate the thought of losing my laptop.  The lady in the store yesterday and the laptop had me in tears. Silly but the worst part of being on chemo is the isolation and loneliness.  I just cant go out when I want and the lady made me feel weird so it took a part of my self confidence.
  A bright spot to my day.  UPS delivered a package for me.  I was surprised because I have not ordered anything in a while.  I opened it and found a lovely Mother's day gift from my step daughter.  It contain some cute items, a drawing by her son, my step grand child. lots of her family pictures and a card.  I broke down in tears.  The kindness of this gift was so amazing.  It touched my heart.  I did not expect anything and this gesture was huge.  My emotions are so up and down, all I could do was cry.  I texted her a thank you and told her how much the gift meant to me.  It was so thoughtful and her gift made me even more emotional.  Not sure why, but it will be treasured always.
  I posted my stalker story on FB.  My friends were quick to comment and give support.  I didn't post it for pity, but to let people know that when one is dealing with a disease like cancer, it makes life pretty hard on days. 
  My ETSY store resulted in two sales today.  The cost of going to treatment is a expensive.  A friend bought two pieces of art and I am so appreciative.  I travel almost two hours one way to go to the doctor or give blood.  The extra money I earn will pay for copayments and gas. 
  Today was rough but it also contained many blessings. 

I am bald again

This morning I woke up and found out that part of my bangs were gone.  I took a shower and a few clumps of hair came out in my hand when I washed it.  I have been waiting for this so it was not a surprise.  Baldness has never been a worry for me....if I was to lose a limb I would worry.
  I wanted my hair gone because the thought of having it fall out in clumps was depressing.  John said when he got off work he would shave it.
  I emailed and texted friends to see if they knew of someone who could shave my hair.  In the small town we live in, all the salons were closed because it was Monday.  So I spent the day being cranky and painted.  Time seemed to slow down as I waited for 5pm to arrive and John would be home.
  After dinner, I asked if he would shave my head.  He had already set up a mini station out in the garage.  The first cut felt wonderful.  I was no longer a slave to my hair but the freedom of baldness was at hand.
  I took pictures of the process.  It made me happy as each piece of hair fell to the ground.  Reaching up and touching my bald head felt great.   Being in control of my destiny was heaven.
  At the end I touched my head and got a wonderful kiss from my husband.  The baldness was a badge of honor.  I am a cancer warrior.  I am in control of my future....Score is Cancer zero and I am up by ONE!!!