Planning for the unhappy future

I have spent a lot of the past few weeks coming to grips with where my life will lead. I made the mistake of looking up survivorship rates for metastatic colon cancer (11% 5-year survivorship).  It was a hard hit.  It was a tough sense of reality.  I try to remind myself that a lot of the 89% that don’t survive are farther along in the disease than I am.  A lot of them are WAYYYY older than me and have other health problems.  A lot of them don’t have the strong desire to live.  So all those things are in my favor plus my very favorable response to treatment.  Most don’t see the results I have been having.

That being said, I have to be realistic about what my future will possibly hold. I need to be accepting of the fact that I may be killed by this disease way before my time.  And honestly, coming to grips with it is tough but in the long run it is making things easier.  I am not just brushing things off to the side.  I am not being an ostrich with my head in the sand.  I am facing it head on.

The hard part is that those around me don’t want to be realistic about what could happen. They don’t want to believe that in a few years I may not be around.  And I can’t fault them for that (heck I would be upset if they were cheering at that option).  But the truth is that I need people to be accepting of what may happen.  I need those around me to be realistic about what my life might contain.  I need that level of support.

When people that I love only want to see the potential miracle and don’t want to talk about the other options of how this will end, it makes it harder for me to be honest about what I am going through. It makes me that much less likely to say what is weighing on my heart or running through my brain.  And there is a lot going on in there.  Oh my is there a lot going on in there.

I am starting to work on a Will to protect my kid’s future. Plus, I need to identify where my pets will go so they can have a good life too.  I need to have an advanced directive written up.  Who is going to speak for me?  Who is going to make sure that I only receive the medical treatments that I want?  What are going to happen to all the family heirlooms I have been lovingly collecting my whole life?  Where am I going to live if I can no longer work?  How can I make sure my kid has the best life possible?  How can I give her the most memories possible so that she will always have that with her?

I need to talk about these things. I do not have a spouse to share with.  It is just me and kiddo.  I cannot and will not discuss this with Kiddo yet.  I am still fully functioning.  She doesn’t need that weight.  But I need those around me to be able and willing to speak with me on these things.  I need to work them through.  I know it is hard for them.  It is easier on the heart to not process this.  But when I am asked what I need, this is what I need.  I need people willing to sit with me and talk with me through these massive decisions.  Because the truth is, once I have these things decided, I will have a huge weight off my shoulders.  I can live in a sense of peace knowing that it has been taken care of.  I can rest easy knowing that if the worst were to happen, I have made it as easy as possible on my family.  I have made it something clear and concise so they don’t need to worry about what I want.  I will have it all spelled out.

But I need to bounce ideas. I need to process this.  It is a lot and painful, but it is a reality with where my life is right now.  And I want to make these decisions now.  I want to put this “to bed” so I can go on having lots of fun.  It gives me peace of mind.

I know I am asking for the hardest thing from those I love. I truly understand that.  But this is what I need the most right now so I can move past this phase.  I need to know I have given my loved ones all the tools needed to make difficult decisions easier.

I love you all. I really love you all.  Thank you so much!  I am not saying any of this with sadness.  I am saying this with acceptance of reality and with peace of mind.  Thank you again and again!

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There are other cancers beyond breast cancer… really there is…

I am frustrated.  So frustrated.

Do something for me.  Go onto Google and look up metastatic cancer support groups.  EVERY single one is for breast cancer.  So then Google search for metastatic colon cancer support groups.  You will hardly find any.

I want a support group.  I want people to talk to that are going through what I am going to.  I am being proactive.  However, there is only stuff out there for breast cancer.  And yes there needs to be help to find the end to breast cancer, however there needs to be equal help for the other types of cancers.

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I was chatting with some friends during treatment about this very thing.  We decided that boobs are easier sell.  Let’s admit it, the colon isn’t an easy picture sell.  It really isn’t.  We were debating on ways to make it a more palatable sell.  And here is what we came up with:

Save the blue moons!  And the picture would be a bare tush with blue (color for colon cancer) ribbons on it.  How does that work out?  I am open to suggestions.  However all I ever see on commercials or with support systems is for breast cancer.

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Okay my grumble is over… well mostly.  I just want to get equal support.  I think butts and boobs have equal rights to supports.  What do you think? 🙂

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!!!

Anemia…. Yeah Enough Said

I have been anemic for 3 weeks now.  It is wearing on the soul.

So a little information about anemia that I didn’t know prior to my cancer diagnosis.  Anemia causes fatigue.  Bone wearying fatigue that makes movement feel impossible.  The lack of functioning red blood cells means your muscles, organs and everything else gets less oxygen than it should.  And oxygen is what keeps the body moving.

My bone marrow is not doing what it is supposed to.  It is not creating the amount of red blood cells that I need.  It is a result of having cancer.  It is a result of treatment. Right now I am sitting at 10.1 on the anemia scale.  The goal is to be over 11. If I was less than 10 I could get the “bee sting shot” as I call it.  But that shot “encourages” my bone marrow to get up off its lazy chemical ridden butt to make more red blood cells.  Then I can have my energy back.

My body just feels drained.  That there is no pep to it.  I can drink as much coffee as I want but that is only temporary and have very limited effects.  My muscles just feel weak.  Mental activities take a lot more time.  Everything is just more laborious

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The problem with feeling so drained is the psychological effect it has on a person.  By now, 6 days after my last treatment, I should be up and running at pretty normal pace.  However I am not.  I am still sluggish.  I still want to sleep as much as I can.  There is so much I want to do, but for my body, it is so much harder to do it without the oxygen it demands.  It is psychologically frustrating to not feel good.

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The beauty of this is that I know there is a fix in the future.  I just have to wait till I get below 10 so that I can get the “bee sting shot” (I tried to find a video to show people’s response to the shot, but no luck.  It really does feel like a few bees are attacking you at the same time).  Once I get that shot, hopefully my body will take off and suddenly I will have more energy.

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It does help to know there is a fix waiting in the wings for me.  It isn’t like this cancer that I will always be fighting.  But it is one thing that I can identify when it is a problem and it is one thing the doctors can help me with.  I am just ready for my energy to come back.

The Emotional Bucket

There is a point where no more emotions are available. I have never reached that before but now I think I am there.  I don’t think I can cry or freak out any more.  Over the past 7-8 months I have been through the following things:

  • July 1 – find out at my quarterly cancer checkup, that cancer is back and it has moved to new locations. Over the next week I have a painful biopsy, scan and fear running through my head.
  • About a week later I find out I have Stage IV colon cancer and that the dr only gives me a few months to a few years to live. A week later I get a chemo port installed and the following day start FOLFIRI chemo.
  • End of July my ex-husband decides he wants to change our custody agreement in massive ways and starts a two-month long fight.

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  • End of August my grandmother, one of my greatest role models dies at 90. I saw her a week before she passed but because she had mersa I couldn’t even hug her to say goodbye. I couldn’t touch her.

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  • Next two months there is chaos in the family trying to figure out what to do with my 92-year-old grandfather and some of his stuff. Just utter chaos.
  • October I get good news that my masses had shrunk some and their energy uptake was drastically reduced.
  • December my energy drastically reduces to the point that I can no longer go to see Dill. He is just too far from me. He is my stress relief and now I need to give him up.
  • End of December I say Good Bye to Dill. The time leading up was dreadful.

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  • January, money gets tight because my job is switching us to a new pay schedule so I have three weeks with no pay. I budgeted well however surprises happen.
  • January I have a friend who lets me play with her buckskin horse. I have some stress relief back. Happy, Happy me!
  • January I reduce my chemo drugs because. More happy dances!
  • January I hit a deer. Nothing too bad but another thing to deal with and a deductible to pay
  • January I start on new health insurance and have to fight for my first treatment. Ugh… changing insurance stinks!!!!!!
  • Find out Dill has EPM. It is a mild case but still. Hearing he is sick, I just stare at walls knowing I can’t do anything for him.
  • Find out my oil tank gauge isn’t as accurate as I hoped. I have to wait until it gets under ¼ tanks to get the minimum delivery from my oil delivery company. Well apparently it jumps from ¼ to empty suddenly as I had been watching it. So I come home to a cold house and have drain my bank account to pay cash for an emergency delivery. And I stare at my walls.

I don’t know how many crazy things I can go through. However, I have been riding a rollercoaster for a while.  All the while dealing with having a potentially fatal cancer and all that implies.

The odd thing is I am doing well. I am not freaking out.  I am not stressing out.  I just shrug and go “okay let’s deal with this now” or “Oh cool, I got a present” (which I still get excited about).  I try to swing everything to the good side.  I try so hard because I have enough on the bad side.

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When talking with Ch the other night, he recommended that I am emotionally drained. That I just can’t process any more on an emotional level.  Logically I can, but emotionally I struggle.  If it isn’t good, then no emotion surfaces.  That bank of emotions is empty.  That bank of emotions has nothing left.  It has been drained of everything over the last 7 months.  But the benefit that the cloud of depression has lifted.  And it lifted when I left Dill at the end of December.  That cloud doesn’t exist here anymore.

I suspect if I found somewhere safe, in arms that were safe, I would find out the tank isn’t empty. But do I really want to go through that?  Do I really want to let it out?  I am tired of crying and being stressed.  I am tired of the two months of hell that November and December were.  I don’t want to go back there.  I am enjoying being in a good mood most of the time.  But I wonder if that is why I am so painfully exhausted?  I had to do everything in my power today to not fall asleep at my desk.  I had more coffee than usual.  I had more sugar than usual.  But still I feel like I am in a zombie state.  I just want to go home, take a hot bath, and go to bed.  That is all I want to do.  That or curl into some safe arms and fall asleep.  But that option isn’t available unless you count Digit, my lovely dog.  But she isn’t the same.

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I really have been through a lot in the last 7 months. I have been through more than my fair share.  I am fighting for my life plus dealing with all the other sporadic things that happened above.  I think I have experienced enough for now.  I would like to get to have an easy pass for a while.  A pass where only good happens.  And don’t get me wrong.  January really has been a good month for blessings from God.  I am surprised continually by His foresight and His level of protection.  I am surprised by His level of providing.  However, this body is tired.  This soul is tired.  This heart and mind are tired.  They need some rest.  They need a safe place where bad things don’t bother them.

 

Buckskin!!

Life has been a whirlwind recently. Been ups and downs.  Good news and bad news.  But the last few weeks over all have been good.  I feel like I am on the right path.  But I have been negligent in saying one thing that has been wonderful in my life.

A friend of mine who has horses is letting me work with her horses. Giving up Dill was so hard.  She and I had talked about Dill and horses before everything happened.  The day after I said good bye to Dill, she asked if I would come over and spend some time with one of her horses who just needed some extra attention.

And of course I jumped at the opportunity. And for the past two weeks I have been enjoying helping out with some barn chores and just loving on her beautiful horses.  The beautiful buckskin cross draft is so much fun.  Typical gelding, heck typical horse, he likes to test his limits.  He likes to see what he can get away with.  But most horses are that way.  They are a herd animal and they want to know where they stand in the herd.  If they can get higher in the herd, they will.

So he likes to test the situation but I think he is figuring out where I fit. Last night I just had so much fun loving on him.  I had so much fun cleaning off his well-earned mud.  I had fun getting him to pick up his hooves.  Last night he didn’t really test me.  He just enjoyed the loving, the praise and the attention.

Horses mimic your attitude and feelings. That is why they are so great with therapy.  You get back what you give.  They can sense so much about you that it is like looking into a mirror.  If you are nervous, the horse gets nervous.  Etc.  They are amazing animals.

Last night was the first night where I spent time just loving on him. I could see him loving it.  I could see him appreciating it.  It wasn’t an “okay I will tolerate this human” mentality that I would get occasionally from Dill.  It was, “ohh this is nice!” I got lots of licks with no teeth showing.  I got his head nuzzling up against me.  I had his attention, even when he was eating.  He was paying attention to me.  He was curious about what I was up to.

Having a horse’s curiosity is like them offering up their mind. They are not watching out of fear.  They are not bored with your presence.  But rather they are interested in what you are doing.  They are interested in what you will do next.

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There really is something about the outside of a horse that is good for the inside of a man, or woman, as the saying goes. There is something about the smell of horse on your hands.  I kept breathing it in all night.  I didn’t want to wash my hands because I knew I would remove the smell.  My heart was content for the experience.  I went home with a sense of joy.  Went home happy for my time with the beautiful buckskin.  I felt accepted because of how he responded to me.

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To this friend, and you know who you are. You have given me a gift beyond monetary value.  You have given me a blessing I never thought of asking for.  I know I say Thank You a lot to you.  But it is because I cannot think of a better phrase for my appreciation.  I love my time mucking or carrying water buckets.  I love scraping mud off from a coat.  I love it all.  And you have given this tired heart so much joy.  You have given me a purpose, a project.  You have given me something to concentrate on rather than my illness.  I feel whole with horses and you have given me time to feel whole.  I am forever in your debt.

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With much love, THANK YOU!

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.