Tag Archives: life

When Symptoms Return

Earlier this week I did Yoga. The little alien (what I have taken to calling my adrenaline mass) was angry about being scrunched up in some of those moves.  There was a part of me that was happy to annoy him with such things! Kinda like how I poke at him saying “die, die”.  You are not wanted.  Get out.

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This morning I had some blood show up in my stool. Talk about miniature freak out. I called the dr and everything.  This was the only symptom I had when I was first diagnosed 4 years ago!  Of course I am going to freak out.  “No No NO… you can’t be getting worse.”  Plus Mr. Alien is still mad at me and hurting a bit.  Fears of things getting worse inside my body.  It is like I am waiting for things to start growing again.  I am waiting to hear bad news.  The nurse on the other line kindly informed me it was probably just from how my bowls like to swing to different states.  If it gets worse, call back…  Okay.  Still doesn’t put me to 100% at ease.  Tomorrow is my vacation day from chemo.  So I am hoping that things are staying the same except annoying Mr. Alien, and that I am okay with.

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Still there is a part of me worried about what I can’t see. What is going on inside my body where I don’t have information until I get my scan in a week or so (guess I need to schedule that…. ).  Just hope and pray that I am still holding still.  Please let me be holding still.  Please let my body be winning the fight against the alien.  Please.  Tonight might just be a Xanax night….

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Why I blogg

There is something about writing. There is something about it that cleanses the soul.

I write my darker stuff, because honestly, when I am in a good mood, I am out living a fun life. I forget about telling people about the good.

So today when I blogged, I needed to off pour what was going on in my head and heart. The pain, the agony, the disappointment.  Basically, the loss of hope for my future.

But know what happened? Shortly after posting that, I started feeling better.  I started seeing the sunlight return.  I knew there was hope.  I was open to words of encouragement.  My perspective changed.

That is what blogging does for me. It is a self-therapy session.  It is a way to let the world know the truth of where I am, but it is their choice if they want to hear it.  And that is okay.  It is okay if they need a break from the gloom and doom I feel from time to time.  I don’t feel less for them for it.

However, know that I feel the good stuff as well as the bad stuff. Know I see the sunlight too.  And writing on here is my way to find that sunlight.  On here is my way to purge my mind and soul of what I am dealing with.  On here gives me an outlet where I do not need to determine who I have taxed too much.  On here gives me a chance to speak out to the world and anyone that wants to listen.

When Reality Hits

Well it looks like reality has kicked me in the face. I know I have been writing about being on chemo forever.  However, there was a substantial part of me that has been living in lala land thinking I would get a 6 month break sometime, or I might be lucky enough to get off treatment.  However, I see the Oasis I created for myself and it has just disappeared as mirages do.

I was at treatment on Friday and they are starting to think about giving me a periodic break from treatment due to my level of extreme fatigue. I brushed it off saying the “bee sting” shot would fix it all.  And yes it will help but they think my body just needs a rest.

After my appointment I thought about it more and called my dr over. I asked her what’s the longest break I would get, ever.  She said that she wouldn’t want to go too much farther than 2 months.  Consider everything in my world shaken apart.  All the hope I had desperately been holding on disappearing through my fingers.  It took a few hours to process that and what the RN had said earlier on the day.  She had said “With the treatment you are on, you will always be on treatment or things will grow again”.  Reality shock when you combine the two statements.

Suddenly I realized that this really is as good as it gets. It doesn’t get any better for me.  Each treatment will get harder and harder.  Each treatment will take more and more from my body.  Breaks periodically will help and will increase the quality of life.  However, they increase the risk of my body attacking itself again.  There is no winning in this.  There is no happy ending.

And now I am starting to see the truth of it. I am starting to really understand what I am facing.  There is still a small part of me that is hoping for a good outcome, but now I can see how unlikely that is.  I need to see the reality.  I need to deal with it.  I need to come to grips with it.  However, I just don’t have the strength in me much more.

I am hoping this shot gives me more energy, gives me the ability to go out and enjoy the world around me. I am hoping I can come to grips with this quickly and with the least amount of pain to myself.  I am hoping I can see the light again soon.  I am hoping that I am able to keep seeing the value of fighting.  I am hoping I can make the best possible decisions.  These are all decisions with either great payouts or horrible consequences.  I keep hoping life will get easier.  I keep hoping I will be able to get up on the back of a horse again.  I keep hoping that I can find new and fun things to do.

I keep hoping that come tomorrow afternoon, I will start coming back to myself. That this gloom will clear out.  I keep hoping that I will be able to make my kid roll her eyes when I come up with new ways to annoy her.

Hoping is getting harder. Hoping is taking more energy.  I keep hoping for God to let me know His grand plan through this.  I keep hoping He will take mercy on me.  I keep hoping.

There isn’t much hope to go around, not like there used to be. However, it is still there.  And please forgive me if I do not have the hope you want to see in me.  Right now I do not have much to spare.  Right now the tank is sitting pretty low.  But I will be honest with you.  I will shrug and say “I am still fighting” because I am.  I will give you a shoulder if you need it.  But it is easier to hope for others than to hope for myself.   Thank you for understanding.  Thank you for loving me no matter what.

Embracing the New Normal

I find myself slowly accepting my new normal that has been in place for 7 months now. I am a stubborn person.  What can I say.  I accept that 4-5 days out of every 14 I won’t feel good.  I have done things to make them easier. Like using paper plates and plastic cutlery.  I have asked some people to visit me while I am secluding myself to my house on those days.

I embrace that I need to work extra hard the other days of the week to make up for being away from work. I schedule based on how my recovery from chemo functions for me.

I go to bed around 630-800 every night due to fatigue. I try for 10-12 hours of sleep every night to give me energy to get through work.

I am honest about what is going on. On what I am thinking, what I am feeling, how God is sculpting this.

I am starting to do yoga because it helps me feel better but doesn’t tax my body too much.

I listen to my body and what it craves. Right now it is anything fruit (which is odd because for the past 7 months it had no interest in fruit).  It craves, it gets.  I assume it needs something in there and that is how it is relaying that information to me.

I am putting things in place that will make any potential passing easier for my family. I don’t want them to have to worry about such things.

I have found an online support group which is helping to know there are survivors out there. Survivors for people who had worse scenarios than me.  (American Cancer Society!!)

Basically instead of fighting the life I now have as a potential permanent path, I am embracing it. I am finding ways to work with it.  I am trying to make things easier.  I am trying to schedule fun things to do on my weekends off from chemo.  I am embracing life.  I am embracing my new normal.  It isn’t ideal but I am embracing it.  It took a while to get there.  A long time to get there… but finally I am.

This is as good as it gets…..

So I started one thing and it turned into this.  It was dark and gloomy, it was complaining, yet again, about my lot in life.  But the thing is, I don’t feel like that now.  I really don’t.

Yeah life has the potential to get crappier and crappier.  Yeah life has the potential to get harder and more taxing on me.  But the fact is that right now I am enjoying most of my life.  If you exclude the chemo parts (which I like to ignore when I am not dealing with it), my life is doing well.

I have this amazing daughter that I adore.  She is a riot.  She keeps my on my toes.  This has taught me that you can’t say you love someone enough.  You can’t tell them how amazing they are enough.  There is no limit on what praises and joys you can spend their way.  I can’t stop hugging her or staring at her precious face.  I look at her picture and I see the joy of the world in it.  I see the hope and prospects.  I see the culmination of my life.  I see everything I have worked so hard for.  I have worked for her to be a free spirit.  I have worked for her to be able to voice who and what she is.  I have worked for her to have the spine to stand up for what she is.  I have worked hard for her to see the joy in the world, to be able to laugh and dance in the rain.  I see her and I see me in a precious way.

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I have this amazing support staff of friends and family.  I have learned how to lean (sometimes) on them.  I am still working on being gracious about that.  However it amazes me how many people care about my life.  And this experience has given me that.  I have forged deeper friendships then I ever had in the past.  I have sought out others more than I would in the past.

I have opportunities still in my path.  Those that I look forward to exploring.

So while the path might get harder for me.  So while the path may never be easier for me.  So while my luck still stinks.  There are all these rays of light around.  There are all these things that bring me happiness and joy.  There are all these precious gems that I wouldn’t give up for a million years.

There is a part of me that can’t remember what it was like to look at life without a time clock over one’s head.  I look at things as possible last times.  I look at things of “who knows when…” And that makes me appreciate everything so much more.  It makes me want to stay on the phone for one moment longer.  It makes me not want to stay home instead of hanging out with loved ones.  It makes me want to give kiddo one more hug and “I love you”.  It makes me want to go ahead and do those things I had been not doing “because there just isn’t enough time”.

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Where as before I used to always see potential things and avoid doing them.  Telling myself it will wait for another day.  Now that “another day” may never come.  Now I want to experience all those great things.  Now I want kiddo to get to enjoy life with experiences.  I want to fill her life with experiences untold.  I want her to fly.  I want her to see new things.  I want her to have so many of those things that I can give her now.  I want her to live and see what life has to offer.  To me that is the most important thing any more.  Living for the day.  Experiencing for the day.  What new thing is there to do?  What friend or loved one is there to see?

I am no longer looking ahead 30 years. If I make it that far I want to be able to say “I have run out of things to do, I don’t know what to do next!”  To me that is success.  To me that is living.  To me, that is what I want for kiddo.

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Life is beautiful.  Life is as precious as a flower but as immense as a waterfall or a night time sky.  Life has so much to offer and I want to drink of it.  I want to know it.  I want to live without regrets.  I want to do the now instead of the maybe.

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To those that are local to me, if you can think of something crazy and or fun to do, let me know and we can go do it!  Let’s make an experience together.  Let’s make something that no one and no thing can take from us.  Let’s dance in the rain.  Lets smile at a sunrise.  Let’s do all those crazy fun things that the world has to offer!!!

Experiencing Life While You Still Have It!

So I started a bucket list. It is the fad to do so right?  However, it has hit home for me.  I don’t know what the future holds for me.  I don’t know where my path leads.  I may live 30+ years and get my miracle or I may only live a few years.  Who knows right?

But I wanted a place where I keep my goals for life. There is so much I want to see and do yet.  I want to travel to so many different places.  There is so much I want to learn yet.  And if I was independently wealthy I would be doing it now.  I would be there.

Most of my items flow around going to different ecosystems. I am an environmentalist at heart.  I want to see animals in the wild.  I want to see natural phenomenon.

So here is my Pinterest board for my bucket list: https://www.pinterest.com/icymoonstone/bucket-list/

I have a feeling it will grow over time. So there are a few topics:

  1. Things pertaining to kiddo.
    1. Seeing her graduate high school
    2. Seeing her get married.
    3. These are things that the doctor doesn’t want to admit that I might get to. These are things all parents want to see for their kids. These are the ones that break my heart.
  2. Places I want to visit
    1. Grand Canyon
    2. Everglades
    3. Alaska
    4. Tropical Rain Forest
    5. Iceland
    6. England
    7. Ireland
    8. Japan
    9. India
  3. Things I want to experience
    1. Seeing whales in Alaska
    2. Seeing wolves in Alaska
    3. Doing the transcontinental railroad across Canada
    4. Take a cooking class
    5. Eat lobster straight from the ocean
    6. Sleep in those crazy awesome tree houses
    7. See the northern lights
    8. Own a horse
    9. Get into better shape
    10. Try new foods
    11. Take my friends to the cabin to experience Potter County

It isn’t an all-inclusive list but there is so much joy I see in that list. There is so many beautiful things to experience in life.  And I want to taste of the glory God made in this world.  And while I still have a taste for that, I have something to strive for.

Maybe the travel is farfetched. Most of them are very expensive trips which are outside my reach.  But there are things on there I can start tackling now.  I can get into better shape.  I can plan a weekend for my friends to join me at my family cabin.  I can research cooking classes.  Those are within my reach.  They are things I can do with kiddo too.  That means it gives us more memories to share.

There is a part of me that feels sorry for people that don’t realize how precious each moment is. People who are just trying to get through each day, wandering and searching but never finding.

I have the biggest encouragement possible to want to experience life. I have been given a pending ending.  And that saddens and scares me.  But at the same time it makes me want to strive to experience all that I can.  To give Kiddo every possible memory and experience that I can do.  She likes that instead of giving her toys, I give her experiences for gifts.  She values them soooo much.  They are things she will never lose.  They are memories that she will always be able to hold close to her heart.  I look forward to giving her more of those.

Eventually I will make a book of my blogs. I want her to have those memories.  I want her to have something tangible of what we went through.  Just something to keep the memories fresh.

So here is to making new memories. Here is to experiencing life.

Fighting for my Poison

Today I write from my chemo chair.  I am sitting here in this crazy good mood.  It makes no logical sense for me.  But here I am sitting here full of joy as poisons are pumped into my heart.

This morning I showed up for treatment.  Handed my new insurance card, since the insurance company switched at work.  And the insurance company wanted everything pre certified.  I was told I would need to come back another day for treatment but could see the doctor today.  This upset me as I had asked at my last treatment if they wanted my new insurance card to prepare for this one and was told no.

When I was in the room with my doctor, I informed her of the insurance thing.  Well it took about an hour but I got approved for treatment.  I was sitting here thinking how funny this is.  Two treatments ago I would have taken the option of skipping this treatment and waiting till the next one.  Whereas now I am sitting here fighting for my poison.

Is it because I am now doing a different battle?  Now I am on more of a maintaining treatment regimen instead of the fighting regimen?  I don’t know.  But I didn’t want to miss my treatment.

I am sitting here in a glowing happy mood.  I am having my drugs pumped into me to maintain me.  I know this treatment is possibly going to be easier on me without my hardest hitting drug in the cocktail.  I have made preparations for making treatment easier at home.  I have set up suet bird feeders to watch.  I have purchased a horse head squirrel feeder for amusement.. I just need to set it up outside.

I am excited to see how this treatment is easier.  I am excited to see what my new normal will be with one less drug.

But I am also excited about all the beautiful things God has been doing in my life.  Sitting here in my own personal silence I am enjoying the love and goregousness of the snow we had last night.  I am sitting here enjoying one of the cancer survivors who came in and filled the treatment center with joy.

I am just happy to be here.  I am happy to be alive.  I am happy to have my beautiful child.  I am happy for the blessings that have been coming my way.  I am happy to have my Poison.