Tag Archives: chemo

I rode again!

I rode a horse yesterday and found out just how much muscle I have lost due to the months of anemia. I couldn’t get my butt up in the saddle even with a step up.  How embarrassing.  I have never been graceful getting on a horse but I can do it.  Dnag.  I guess I need to work on my quad and glute muscles.  I had to stand on a barrel to get my leg over the horse.  I felt like such a horse noob!!!

And oh my word!!! My legs are sore today!!! The handsome horse I was riding is part Percheron and he definitely showed his draft side.  Definitely!!!  Lots of sore muscles today for me but I am happy with that, it means that I have muscles there starting to remember they can do things.

So now I have a new goal…. Get my legs back so I can ride. I have an area I can concentrate on and work hard at.  Somehow when my goals are around riding horses, they get done.  A horse is my motivation and it works.

I am excited about this. 🙂

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….

Great encouraging news 

So I’m writing this on my phone, but I wanted to get the news out.  Plus I’m on Xanax and I’m waaaayyyyyy too lazy to get my laptop out which is two feet away from me. (I’m listening to my therapist on the Xanax.  Aren’t you proud of me?)

So today I asked about the pill Xeloda.  The colon cancer online board had a lot of people talking about it. So I was curious why my dr chose a different regamine.  The scientist in me came out.   I know she had a great reason.  I was just very curious.  I was also curious why they chose to not do surgery on me.   I also admitted that I wanted to start stretching out treatments as they recommended last week (therapist should be proud).  So here’s what happened. 

1. She likes 5-fu in FOLFIRI because she sees those patients every other week and helps her monitor those she’s concerned about.  But she had no problem switching me over.  With this drug I wouldn’t need to have the 5-fu pump that I HATE HATE HATE!   By the way. I hate that pump being attached non stop for two days.  It does the same thing.  Has something called hand-foot side effect where the hands and feet can become very sensitive. But other than that it is very similar to the stuff I’m currently on. 

2. Apparently it’s very risky to do surgery when there’s masses in different place. Where mine are, are apparently very rough surgery. So if they took out one mass I wouldn’t be treating the others.  Makes sense to me.  

3. They agree it would be best to help my sense of living.  They commented again about how good I have been doing.  Heck today is #16 treato for me!  Every other week.  No missing of weeks yet.  They think it would be good to give me a breather so I have some extra time to enjoy life. 

So here’s the plan. I have a CT scan in the next three weeks.  I don’t do my treatment in two weeks.  In four weeks we review my CT results and hopefully start on Xeloda and then only do treatments every three weeks. This gives me more time in between treatments which means I have more time to have fun. Plus I won’t have a hermit weekend bc of the pump every three weeks.  And if this doesn’t work, we change back. Very very little risk and all the potential for gain.  I’m so excited that this weekend might be my last time on this horrid pump!!!!

Chemo Dating

 

I was told I should write something about my recent experience into the foray of online dating.  I have done it before.  Some with good success, some with horrible.  When I was first diagnosed I didn’t have any interest in dating.  Who would want to attach their life to someone with what I was dealing with.  It is an extra struggle to add into it.  But in January I decided to give another try.  I was starting to come to grips with what my future held.

 

So I started again on OkCupid.  Figured, what the heck.  Let’s see what happens.  If nothing else I can meet some fun, interesting people.  And sometimes that is a really good thing. 

 

Well the usual onslaught of “interesting” people left messages that made their intent VERY clear.  Hey, to each their own right?  I don’t judge even if that wasn’t what I was hoping to get out of the experience. 

 

I found this one guy that showed some potential.  So we started messaging a lot.  He is a fellow geek, foodie, not repulsed by the dirt a horse entails (ha funny pun!).  We talked about lots of geek topics!  Hey this is a good sign right?  But over time, the questionability of him started to show.  He didn’t do anything.  Over the month and half I messaged with him, the most exciting thing he did was go to a market.  He talked of all these things he wanted to do.  But they were always tied to doing it with “that special person”.  So life was on hold for him.  When I recommended that he do something fun with his free time, that was when the hidden “him” came out.  See the pictures below. *********

 

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I was appalled.  All I said was a kind suggestion to go out and have a good time.  So I decided, I do not need this in my life.  I am trying to enjoy every moment. I don’t need someone who is going to fly off the handle at such things.  I really don’t. 

 

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He knew my health situation.  Why would someone say “When you die, I hope you go to hell.” To someone that is going through what I am going through.  It just showed a vindictive nature that I REALLY didn’t need in my life.  I want someone who loves life.  That likes to have fun.  I want someone that brings as much exuberance as I have.  Then he had the gall to ask for a truce.  I told him there was no coming back from such a comment.  I can see it being said during an argument in person, it is still terrible but I can see it as an in the heat of the moment.  But this.. This just astounded me. 

I hope he has some luck.  It just won’t be with me.

 

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!!!