Back to Being Me

I am at a crossroads. Things have changed again, but this time for the good.  Heck this time for the great!  I am feeling so good.  Since I go the anemia shot and started acupuncture I am back to me.  I feel like me.  I think back to the me of the past 3 months and cringe.  She was so unhappy, so hopeless.

Now with this beautiful weather the northeast is getting (heck it was 75F yesterday… in FEBRUARY!!) I am just itching to do stuff. I am itching to be in paddocks with horses.  I am itching to get muddy.  I want to move.  At nights I am no long going to bed at 6:30 like I had for months.  Heck I do not know what to do with myself after 6:30.

I just want to be on the move all the time. I am convinced that acupuncture is helping me.  I was starting to drag yesterday and then had acupuncture.  Now I am rip roaring ready to go.  It could be because I am visiting Dill this afternoon.

I haven’t seen my boy (yeah he is my boy… still possessive of that huge boy) since I said good bye in December. I can’t wait to see his eye rolls and sighs at seeing me.  I can’t wait to hug his neck (no matter how much he thinks that is a stupid thing to do) and smell his horsey smell.  I am bouncing out of my chair right now to get to go and see him.

If you would have asked me 4 weeks if I could go to see him, I would have told you it would take too much energy. I hope this lasts.  I hope I can keep feeling like me.  This is me, bouncing around with joy and horrible jokes.  I don’t want to go back to that hopeless version of me.  I want to stay this obnoxiously joyful person that I am.

I don’t think about death any more. I don’t think about where my path might lead.  I am in the present again.  Oh it feels so good.  Oh hope feels so great!

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. *********

 

 img_3654

 

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. 

 

 img_3657-2

 

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.

 

Longwood Gardens

Yesterday I got to enjoy a therapy session and then time with my Mom, Kiddo, Sis-in-laws and two nephews.  It was so great.  We walked probably two miles.  But more important we just spent time with each other.  We enjoyed each other.  We laughed and created memories.  And we have the pictures to improve it.  It makes the heart glad that after an extensive outpouring of my heart to my therapist (who is amazing btw).

I have complained a lot recently and I talked with my therapist about it.  She asked me why I am not taking xanax on days where I know my spirits will be down.  I had no good answer besides “I never thought of that”.  My drs had been encouraging me to stretch out my treatments.  But I was afraid it might cause the cancer to start growing again or to move.  She looked at me and said “Do you trust your doctors?”  I said a resounding “yes”.  She looked at me and said “do what your doctors suggest.  They know what they are talking about”.  I looked at her and went “that makes sense”.

I hadn’t thought of those things to make my life easier.  This is why she is great.  Plus I sobbed for most of the treatment just getting things out.  I feel like I lost 10 lbs just getting that out of me.  She reminded me that what I feel is completely normal for my situation.  I needed to know that all those feelings are normal.  And she is a professional telling me that.

But getting all that out let me really enjoy and embrace Longwood Gardens and my family.  I have some amazing picutres that I can put in kiddos journal for if I pass.  I have given her one memory she can go back to.  And that makes me happy.

And in two weeks we are all going to get together to do messy art day.  Throwing paint.  Making a mess.  And I am sure laughing a lot.  Just enjoying life together.

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.