Tag Archives: death

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!

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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.

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!

Cancer – death sentence or not?

So one doctor says a few months to a few years to live. Now with the results that I am starting to see from the chemo, my RN at the oncologist says she has seen some go for 10 to 12 years, but those are the exception to the rule.  I am 37 years old.  How is it that I am staring down this barrel?  How is it that I find myself in this position?

None of these are good enough options for me. I don’t want to die.  Put simply, I do not want to die.  I don’t want to be fighting for my life on this scale.  I want to be able to enjoy my life without this huge anvil sitting over my head, ready to drop at any point.  It is something hard to come to grips with.  For the past 2 ½ months I have been having one trial after another thrown at me on top of the scary barrel in my face.

One security blanket after another has been ripped away from me. There is not much I can do to help my odds besides do what the doctor says.  I do what they say.  I take my medicines; I try to give my body good energy to work with.  I try to keep my spirits up.  But if I am honest, it is getting tough to do that.  It is tough to know the odds aren’t in my favor.  But then again the odds haven’t been in place right for me to be where I am.  The odds of me being in this place with cancer at my age and family history is so small.  But here I am.

So when I reach out to others for support, one in particular gives me bible verses of God promising health and healing. I fight to hold those in my mind.  I fight to keep them in my mind’s eye as the promises to hold.  He said brilliantly to me today “Whose report do you believe?  The Doctor’s or the promises from God?”  And there are times, many times when it is hard to believe that God will heal me.  I wish he would send me something saying I will survive this.  But is this where trust comes in?  Is this where I have to fight and believe that He will do what He has said to others?

This is hard. This is so terribly hard.  I want to know for certain that I will be repaired back to a functioning body.  I want to know that this fight will have some fruit.  I keep asking for the blessings that Job received for holding the faith through his trials.  I keep praying for extra angels to come my way for when I am weak like I am right now.  I keep praying for blessings.

And I have seen many blessings. I have seen so many blessings.  I can’t even count the blessings that have come my way.  They bring tears to my eyes to see these things that I could not have asked for.  And for that I am so thankful.

This is just the toughest thing I have ever done in my life. Absolutely the toughest thing.  And I am ready for it to be in the past.  But that isn’t where I am right now.