Treatment #8! 4 more to go!

So I am 2/3 way done of the wonderful experience that is chemotherapy.  It felt like I would not be able to get to this point.  But now I am standing here and pondering.  Now I get to talk to the Dr about what the moving ahead steps will be.  It is kinda exciting.  The thoughts of life returning to normal.

So today’s treatment was odd.  My 8 year old and her Step-mom joined me at treatment.  Kiddo had a valid reason to not go to school (but wasn’t sick, I would never send someone sick into an Oncology department unless they were a patient there to see the dr. ) and I had no other location for convenient care.  She has never witnessed how a chemo port worked and I think it was odd to her.  Granted the first time or two my port was access, it wigged me as well.  My port is below the skin so it looks interesting to see something stuck into it, let alone then drawing blood.  She is used to me getting medicine through it but the blood drawing was odd.

Here's what a chemo-port looks like.
Here’s what a chemo-port looks like.

Her Step-mom was wonderful with helping me care for kiddo while getting my meds.  It was such a blessing to have someone helping with her in a place where you rarely see kids.  Kiddo did as wonderful as possible for the 4-5 hour session.

Well now I am hermitting at home, as I plan to stay for the next few days, as is normal.  There is something comforting to staying at home while working through the treatment.

Who needs only a day??? I want a few months!!!
Who needs only a day??? I want a few months!!!

With the knowledge of only having another 4 times to go through this, makes it somewhat easier.  We are now talking about the things coming after treatment, and it isn’t too bad.  Of course I get another colonoscopy but that isn’t surprising.  I will get some more CATscans of course.  More blood work of course.  But all of those are easy.  All of those I can handle.

cancer warrior

All of the above is a path back to normality.  And I am starting to get close to the beginning of the path!  HAPPY HAPPY DANCE!!!

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I Love Steampunk! And Yes I Am A Geek And Proud Of It!

One of my biggest regrets of things I have missed (well second to the holidays I missed) due to this illness is Steampunk Conventions.  So what is Steampunk??  I think this image describes it perfectly:

whatissteampunk2

Steampunk is a way to express individuality through clothing, cool gadgets, amazing artisans and other such wonderful things.  It is a time to let go of social norms.  It is a time to just be myself and meet wonderful people.  It is probably one of the most accepting societies of people I have ever met.

I just got to enjoy a weekend in corsets, fun skirts, and an awesome new parasol.  It was a fun weekend to forget all the real world problems.  I was able to meet many new people.  I got to dance to some of my favorite bands (new and old favorites).  There were many other amazing artisans that love what the do and it shows in either their wares or performances.  And the best part of the weekend was spending it with my Knight.

Steampunk Example.. see fun!
Steampunk Example.. see fun!

He is the one that found this outing for us to enjoy.  It was a balm on a lot of my mental wounds.  Chemo has a way to make you feel inhuman, for me it makes me feel quite ugly.  Spending a weekend in some of my favorite attire makes me feel beautiful.  I feel like me again.  It is so wonderful.  And it is a beautiful gift from my Knight.

Perfection

There are many on WordPress that I have had the privilege to “meet” via reading their blogs.  Many  are in situations similar to mine.  They are around my age, they are dealing with cancer and its ramifications on their lives.  And from reading their blogs, I have learned one very important lesson.

They all feel the same way I do.  They are fighting the fatigue, the guilt of not being up to par, the shame of not being perfect to the outside world.  They bravely mention how they hate the time it takes away from family and being wonderful parents, partners and friends.  I read of others that find the mask of pretending to be perfect is not worth the effort.

Chemo takes away your strength, energy and so much more in little pieces.  Each treatment strips more away.  I have reached the point finally where I feel that honesty in how I feel is the only way to respond to questions.  I do not have the energy to maintain that facade any more.  Before I would put on this fake smile and enthusiasm and pretend that treatments are nothing.  I was trying to be perfect to anyone looking in to see me.

But perfection is left for God and God alone.  How many times in my life have I tried to pretend to be perfect, to say the right thing, to pretend to only have perfect thoughts.  All of this is a lie and providing false witness.  And by showing the world only this fake mask, not only am I lying, but I am also making it difficult for others to open up about what they wish they could.

So good bye perfection.

mask 2.jpg

Miracles Can Happen in the Most Unusual Ways

So the first disclaimer is that I have borrowed this video from a fellow blogger.  It came across my RSS Feed and it hit home.  I will put a link to that blog at the bottom.

Second note, I am feeling much better today.  Yesterday was rough.  Those blasted Pits Of Dispaire had claimed me.  But last night I got my first decent night’s sleep in a bit, and I actually feel up to eating as I should, so I am feeling a good bit better.  (Woohoo and yippie!)

Now that all of that is out of the way, here is the video I saw and pondered: https://www.youtube.com/watch?v=DcFuI86XTic.

I live in the country.  I live near horse farms and dairy farms.  My family consists of a lot of people who used to be farmers.  So I have been brought up with the knowledge of what happens when an animal is severely injured.  It is a reality of life.

Then I see this video.  A horse that everyone had counted to be a “lost cause” surprised them all.  Not only by surviving, but also by bringing new life into the world.  There is a future for this creature that typically would have been written off.

Frequently I see myself as damaged.  I see the scars from the recent surgeries.  I see the damage that chemo is doing to my body which may or may not be repaired.  There is no guarantee that I won’t have to go through this again.  My future is not a guarantee by any form.  However, if God can work a miracle in this one horse, why not in me as well.  Maybe I will still be this damaged creature.  Maybe there will be new scars added or more things coming down the road to make me climb over.  But also, maybe there will be joys indescribable.  Maybe there will be a beautiful future that makes all of the past few months slip away to a little bump in the road.

There are days, like yesterday, that can make it very difficult to see potential wonderful things.  But there are days like today, when a reminder is shown to you of the potential glory.

And if God cares so wonderfully for wildflowers that are here today and thrown into the fire tomorrow, he will certainly care for you. Why do you have so little faith?  Matthew 6:30

Blog Link: http://cutepuppylove.me/2014/09/23/so-what-if-she-has-a-broken-neck/

wildflower

Strength. Yeah It’s Not Here.

Strength.  I have been hearing that term a lot.  And many of the times I have heard it has been in reference to me.  To be completely frank, I just do not feel that the word fits me.

Strength noun

  1. the quality or state of being strong; bodily or muscular power; vigor.
  2. mental power, force, or vigor.
  3. moral power, firmness, or courage.
  4. power by reason of influence, authority, resources, numbers, etc.
  5. number, as of personnel or ships in a force or body: a regiment with a strength of 3000.
  6. effective force, potency, or cogency, as of inducements or arguments: the strength of his plea.
  7. power of resisting force, strain, wear, etc.

After looking up the definition, I still do not feel that the word fits me.  If I was strong, I wouldn’t feel so lost or hopeless.  If I was strong, I wouldn’t need so many to lean on.  If I was strong I could still work while going through treatments.  If I was strong, I wouldn’t need to hermit on my treatment weeks.  If I was strong the side-effects wouldn’t be so demoralizing.  If I was strong I would be able to walk through this with my head held high and determination in my eyes.

I do not think it means what you think it means. jpg What I am, is one person who is trying to just take the next step.  I am a person that is holding life together through duct tape, tears, and fraying strings.  I am the person that is trying to do what I can with the path thrust upon me.  There is no glory in that. That is what everyone does to survive.

I wish I could say I lean on God so much that He gets the credit.  I have faith that He has a plan for this.  Some days I think I can see a glimmer of the plan.  Other days I think that my life has become a gauntlet of “let’s see what we can throw at her next.”  I want to learn to lean on Him like I see others do.  There are times in my life where that has been so easy.  But right now, right now it is tough.  I feel like Job who has one thing after another taken away, but I am not good like Job.  I can’t see Satan and God using me as an example.  I am just trying to survive the next day, hour, minute, second.

I can’t see ahead.  I can’t see the road.  Heck I do not even know if I am on the road, a cliff of insanity, a fire swamp, or in lightning sand.  I can barely see where my next foot placement goes, and half the time even that is questionable. I do not know if a ROUS (Rodent of unusual size…. Prince Bride references abound in this blog to those that don’t know) is an inch from me.  I keep flinching waiting for the next bite, the next hurdle, the next stress to become visible.

Rodent Of Unusual Size
Rodent Of Unusual Size

I long for the strength I see in others.  I long for their unflinching faith in God.  I want to be able to say “God has it under His control” and mean it deep down in my heart.  I wish to be able to cast my cares on Him and never think twice about them.  I do not question His existence or His love.  I am just not strong enough to hand everything over and let it go.  Maybe I will learn that hard lesson through this, but right now, I just want to rest.

 Can I please just rest?

It would take a miracle

My Body, The Alien

This shell I reside in doesn’t seem to be mine any more.  Whoever replaced it, can you please return my original body to me?  This shell doesn’t respond how my old one did.  I can no longer predict what will happen when I do this or eat that.  It doesn’t sleep like I am used to.  Not to be gross, but it doesn’t digest like I am used to.

I ponder my old shell this morning after a night where, yet again, I awoke at 2:00AM unable to return to sleep for another hour.  This has become fairly common at this point.  I can not remember the last time I slept through the night without waking up.  There were grand plans I had for today, and now I feel too tired due to this sleep thing.

Besides that, my oncology team are trying to get my digestive system to level out and stop going to extremes.  It seems like no progress has been made.  It doesn’t matter what I eat, my system does whatever it feels like. I just wish the bipolar dance my intestines feel like playing to would level out a a bit.  Any sort of medication, just seems to swing me even farther the opposite way, so I just have to “deal” with it.

My stomach likes to play “what will I allow you to eat today.”  It is similar to being pregnant all over again.  But with being pregnant you get this beautiful child at the end.  I just get to play “let’s look at foods and see if my stomach gives any warning signs to stay away from it today.”  I do not know why I bother with different foods though.  My tongue seems to only taste salt any more.  The rest of the taste buds were not included in this shell.

The cyber-mechanics to my toes and fingers seem to be faulty in the model.  Frequently they become numb.  Not the pin and needles numb, just not being able to feel.  Sometimes this even extends to the tongue or lips.  They definitely need to improve this in following models!

And to complain more, my brain.  Oh my, I think this is what I miss the most.  Chemo-fog is a rough thing.  It is like watching your brain slowly drive down the lane as it leaves.  I have always prided myself on having a fairly decent intelligence.  Puzzles and complex games have been a favorite past-time, but now I find myself relegated to only playing solitaire.  I mix up words frequently, forget facts all the time, and have to run ideas past people because I just can’t trust my logic.  Whoever designed this shell really should have included a better brain model because I really dislike this one.

And lastly, the newest frustration of this shell is the hot flashes.  This past treatment I talked with my Oncologist and she told me why this is happening.  I am getting to have a test run at menopause.  Lucky me right?  I get to find out what it will be like for me in 10-or-so years.  Hot flashes.  Mood swings.  This is one of the side effects they did not inform me of.

So anyone looking for a new shell, I do not recommend this model, it definitely needs some more test runs and alterations.

Cyborg

What not to say

I have been debating on writing about this topic for a while, but I feel at this point I can finally address it.  The list of things not to say to those going through cancer treatments.  As with anything, point of view is a so subjective.  However, I have found well meaning people saying things that can hurt, completely unintentionally.

So my thought is, if I put these things out there, maybe it can help others.  Nothing is meant as a slight against those who have said these things.  Trust me, I understand only kindness was meant by these statements.  So here goes the list:

1.  ” I know _____ and they died of that disease”.  So empathy is completely the goal of this statement.  But, during this time of struggle and realization of a lack of immortality, additional reminders are not necessary.

2. “So-and-so had a much easier time with treatments. Wonder how that happened.”  Personally I feel like I should handle treatments better then I do, but I do not get a say on it.  A lot of the time, I feel like a wimp for not being able to keep working.  But, with the chemo fog and the fatigue, I know it was a right decision.  But there are many times when I wish I was able to just continue living a normal life.

3. “You are a 1/4, 1/2, etc. way through your treatment!”  I realize this feels counter to how everyone else thinks, but with chemo, each treatment gets harder.  With each treatment, it gets worse.  So when you are looking down a barrel of however many treatments, a countdown seems very daunting.  Now, with that said, I am now starting to celebrate that I only have to go through this 5 more times.  So when the patient is starting to rejoice at the shortening amount of treatments, feel free to state the above, but wait for their cue.  Personally in the beginning the countdown didn’t go fast enough and any reminder of how much more I had left made me feel daunted.  This is so counter to everything else, I realize that, but chemo goes counter to about everything else.

So this was just a list of 3 little comments that I heard many times, and each time was with love.  Again, and I can not state this strong enough, I realize no pain was meant with the statements.  They were statements made to try and empathize or fill that awkward conversation where no one knows what to say.

So at the end of the day, the compassion and thoughtfulness are what really matters.  The hugs and “let me know what I can do to help” mean the world.  I love all of those that have stood around and supported me.  Thank you for everything.

awkward