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!

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.

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!

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.

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”.

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.

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.

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

.

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.

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.

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.

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.

 

 

 

The Light Shines on Hopelessness

After 5 days of feeling like the world is crumbling around me, today I am back into the glory and light. I needed to take a part day for FMLA yesterday to get extra sleep and it was just what my body needed.  Because today I am in a world that is bright and sunny verses where I was a few days ago.  Even though it is sleeting outside, I am filled with joy and happiness.  The yo-yo attacks again, but this time I am glad for the swing.

This morning I decided to listen to a podcast sermon. I do that time to time but I figured what the heck this morning.  So I Opened up my list of podcasts I had been ignoring for a while and saw one titled “ Doing the right thing isn’t always easy” by Mark Gungor.  So I clicked on it.  And it was what my heart needed to hear.  He went over how many people in the Bible suffered for doing the right thing, but in the end resulted in something beautiful and good.

While I still don’t know how this will end for me, I am hopeful that God will make some beautiful thing out of this. He will make blessings abound for this.  And it was exactly what I needed to hear, that God is going to do something great.  There is going to be something beautiful for what I am being asked to endure.

I have decided I need to find a way to make the 5 days of feeling miserable from treatment into something good. I really don’t have any ideas.  That is when the darkness consumes me.  It is when I feel the most miserable and hopeless.  I need to find a way to make those days into a blessing.  But how to go about that is puzzling to me.  I curl up on the couch and sleep off and on.  I don’t do much because I don’t feel like it.  Also the pump annoys me so I try to move as little as possible.

Any suggestions anyone can offer would be appreciated. I do need to find something to make joy during the darkness.

God is good. He will do what is best in the most amazing way.  I just need to keep walking the path.

Grumbles to Joys

I have been grumbling a lot. I have been complaining a lot.  I don’t know if that is good or bad.  Is it good that I am processing what I am going through?  Is it good that I see the reality of what life might hold for me?  Or am I focusing on the negative and not the positive?  If you focus on the negative, that is all you will see.  Have I become that person?  I don’t want to be that person.

However I do use this blog to voice my darker thoughts. The ones that people don’t want to hear.  The ones where people give some sort of simple answer to get me to move past the grief and dread and fear in my heart.

No one wants to hear that this is tough. No one wants the honesty that planning for retirement seems like a joke now.  Or when I hear people say in 5 years they are going to do something, that I think “I hope to live that long and that will be against odds”.  When people say “just wait till kiddo is a teenager” and I think “I would be so lucky to see that, but it might not happen”.

When people say “well any day you could be hit by a bus and that would be the end.” And that is the hardest thing because it is belittling what I live with hanging around my neck.  Others don’t have to go to chemo every other week.  People don’t have their bodies trying to kill them.  People don’t have to walk every day with the knowledge that I might not see my kid driving.  That I might not see her first boyfriend.  Things that all parents take for granted are now wishes and dreams for me.

So maybe I have been grumbling too much but my reality sucks. There is no easy way around it.  My reality sucks.  And I am trying to make the best of it, but it is hard to do sometimes.  It is hard to see the rays of sunlight through the darkness that is my future.

So I am going to try to find some good things and list them here. To hopefully change my point of view.

1. I am still working full time and am managing to hold my own doing it. Most are amazed that after 6 months of chemo that I can still work and I am. It isn’t as taxing as one would think. I am doing it
2. I have amazing friends and family who love and support me. They each have their own gifts. They help in their own special ways which I can’t express my appreciation enough. They all offer me love in so many blessed ways! Never have I felt so loved
3. I have Kiddo. The one biggest blessing in my life. She and I are friends. We work as a team. We have a system that works. I don’t have to yell at her (except when we are trying to leave for school). She and I have a system that is ours and ours alone. She has a will power that I envy. She has an amazing mind. She has a great heart. She is so creative and comes up with so many crazy awesome ideas. My Kiddo is my world. My Kiddo is my heart. I love her so much!
4. I am about to go off one of my hardest hitting/side-effect drugs with my next treatment. This I such a huge relief. To know next time should be easier. To know that I shouldn’t have as much of a burden for my next treatments is wonderful.
5. That my CT scan was good. That nothing increase, that there aren’t new cancer spots in my body. I had been having some pains that had me so scared. So very scared that they were going to find cancer in new places. But for now it is staying place and not growing.
6. That I have a break from chemo pending. I will get a break from having to do this every other week. I don’t know when that will be, but knowing it is pending is good.
7. God has this. I might be frustrated with Him. I might feel dejected because of Him. But I know He has something wonderful coming out of this. It is hard to think of what the cost to me might be. But I know with complete certainty that when I get to heaven it will be worth it. I might yell at God saying “stop this torture of me”. I might scream at Him that I need something good to come my way. But at the end of the day, I know He has this. And somehow it will be the most amazing and beautiful story.
8. I am grateful to have the fortitude that I have. I have gained it through lots of trials in my life. But that is what is keeping me going. The me of 4 years ago would be a puddle on the floor. And know what? I am not there. I am still laughing, I am still enjoying life. I am still standing straight and fighting on. I am not giving up.
9. As much as I hate being a martyr I am grateful to be able to serve His kingdom. This one I go back and forth on, but honestly I know it will be so beautiful when all is said and done.
10. That I am given a chance to really enjoy kiddo. I don’t know how other parents are, but there were times where I was biding my time till another age. Now I enjoy every moment with her. She gets more hugs and kisses. She gets to hear how precious she is to me. I get to tell her how much I love her. We get to do fun things that otherwise I would put aside for later. For me there might not be a later. Now is the moment to do things, to experience life. And I am so glad that I have been given this chance.
11. Nothing is taken for granted any more. I know that my lifespan will be impacted by cancer. But I appreciate everything so much more. I appreciate little things and big things. I don’t waste time with uselessness. Instead I enjoy every moment in front of me. And I want to share that with others. I want others to see the joy. I want others to be able to do the same. To enjoy the here and now. It really is so precious.
12. I can see how precious everything is. Everything is so precious. Every emotion, every second. Every single one is a gift from God. And is something that is to be valued!

Thanks to those that support me

In trying to be honest about how things are, I’m dreading going to treatment tomorrow. It’s #10. My body is getting weaker. The fight is getting harder. The spirit is losing perseverance. I threw a personal temper tantrum tonight not wanting to go. But talking to a blessed friend and mentor, Judy , helped me. Thank you for listening. Thank you for not giving empty statements. Thank you for helping me remember what I’m doing to hopefully make it easier. 
1. I have nothing planned till kiddo coming home Monday night. 

2. I’ve stocked up on flavored seltzer to help keep me hydrated. 

3. I’ve prepared a sausage kale soup (thanks for the suggestion Teddi) so I have yummy easy food. 

4. I have friends and family coming to treatment tomorrow ( thanks Carolyn). 

5. I have a wonderful support group that’ll help if I needed it. 
She also helped remember who is in control of all of this. That I’m still under God’s love and care. 
She helped remind me that I’m a fighter. That I just need to concentrate on the now and not the future. That I will keep on persevering because that’s how I was raised (thanks Sandy and Dad). I’ll keep trying and fighting.  
Thank you Judy!!