Post Chemo 5th day check in

So how have I been doing? I think pretty well so far.  I am 5 days from the start of my first treatment, in that I had treatment 5 days ago.  If you take the time to look back through the archives of my blog you will see that I struggled with side effects from day 1 of chemo last time.  This time I am grateful to not be on Oxaliplatinum.  Don’t get me wrong, it is a great drug and does wonderful things.  But it just didn’t agree with my body.  It caused serious neuropathy.  The cold sensitivity was terrible.  Lots of other side effects.  But I barreled through 6 months of it.

This time however, I am not on the drug. This time I am on other stuff (sorry I forget what they are as I have only seen them once so far).  I know I am on 5FU again for a 46 hour infusion but that I can handle, been there done that.

So this time. What have I had in the way of side effects.  A little indigestion.  Back on zantac again.  Easy problem solved.  Of course I am tired.  Day 3 and Day 4 were the worst, as was par for me last time.  So I am trying to listen to my body and sleep when I need it.  I am trying to keep healthy food going in so my body has energy to heal.  My tongue is feeling a bit off and I am looking into that, but I can’t see any sores.

So overall I am truly blessed this time around. So incredibly blessed.  Granted I would prefer to not need to do this at all.  Sure I would love for everything to disappear but that isn’t the path ahead of me.  So right now I have to take the path God has given me.  So right now I have to keep walking forward and doing the best with what I have.

I am trying to keep things simple for my day to day life. One step I have taken is disposable plates and bowls.  It means less dishes for me.  Less work for me.  Sure I am an environmentalist but for now this will help with my day to day life.

Also I have ordered a robotic vacuum. The house I am in does not have much carpet and my dog never stops shedding.  So here’s one less thing I need to do on a regular basis.  I can schedule this little guy and he will do the work.  Hopefully it is that easy….  Well one can hope.  Just anything to make life a little bit easier when I am dealing with treatment times.

If anyone can think of anything else to help with managing the day to days, please let me know. I am all about making life as easy as possible right now.  Gotta conserve my energy so I can get back up on that horse.  I miss my Dill.  So I need energy for that!

On the happy side of waiting to find out the status of if you have cancer…… Yeah I just said that…

So I just posted a post about how bad the last 9 days sucked.  There really is no other way to phrase it.  I thought it would be good to say the blessings I have had.  And they have been there.

Where to start.  Most of this revolves around friends and family.  So many have stepped up in so many unexpected and amazing ways.

The Knight from the first time through the battle who is a friend now, he has been so amazing.  On the day I found out how the world can go upside down in 5 minutes (part deux), he went will me to meet my Dill.  Dill is my wonderful half lease horse.  (another wonderful story to tell)  Dill and I have been bonding well, and as only horse people can understand… horses are magical.  No he isn’t a unicorn, but as his and my bond grows, he magically makes me happier just by seeing him and doing things with him (see the post on bobbing for apples!).  Well Knight went with me to go and meet Dill.  He let me cry, he let me get boogers on his shirt as I complained about how unfair this all is and he gave me awesome hugs (the Knight that is, not Dill… that would be silly).  Then we went out for dinner with “Amazing Example of what a married couple should be” (here forward I shall call them Amazing Couple).  We had amazing sushi.  I had way more wine then I should have on a under fed stomach and we had an amazing time.  It was what I needed.  Knight also came over one night and made me so much amazing steak, spinach and mushrooms in cast iron pans so to help my iron levels and thus help the anemia.  We sat and watched a movie.  And when I wanted to cry, he let me.  When I wanted to throw a temper tantrum he would.  He also took me to my biopsy.  I was so impressed that he would go through that with me after how bad the surgery was the time before.  But he was there for comfort.  He was there for strength when I needed it most.

Awesome Couple have been a dream with helping with Kiddo’s bday party.  They have been a listening ear.  They help keep me distracted from the scarieness of the world.  Heck Mrs. Couple made the bday cake for kiddo because she knew I wouldn’t have the energy to do it.  They helped with getting a projector for an outside movie for kiddo’s party.  Anything I ask I am sure they would do in a heartbeat.  As with all my other family and friends, I am afraid to tax them too much.  I am afraid of wearing them down with the chaos in my life.  But I know if I ask they would help.  They have always been so wonderful to me.  They have always been by my side no matter what is going on.  And I am so glad to call them friends!

Horse Guy AKA Tig.  He has been my blessing.  He has been so wonderful to me.  We have made the best of friends.  We are terrible influences on each other.  We make each other laugh with the stupidest things.  But yet we are there for each other when the world falls.  We seem to take turns at it, but we are rocks for each other.  And the amount he has been one for me makes me overwhelmed.  He will listen to my sobbing.  He will send encouragement whether its through something sweet and kind or terribly inappropriate joke.  And when he knew I needed desperately to see Dill but couldn’t make it out because I didn’t have the energy, he surprised me by bringing Dill to me.  Now please note, Dill is a total pain to be caught in the pasture at times (I have been working on him and he is doing better for me, but not everyone else yet… still working on it.).  Plus I live 35-45 minutes from the barn so that is a LONG drive with a horse trailer for a few hours of me hugging Dill (can’t ride yet due to the biopsy).  Plus Tig gets up early on Saturday to work, so he was already exhausted before all of this.  So I know what he put into it to get Dill to me.  But for a week I have been a sulky pain in the rear, exhausted gal.  But as soon as Tig showed up with Dill I started grinning ear to ear and I couldn’t stop.  I just kept hugging Dill and kissing his face and neck.  He delt with it… there might have been some eye rolls on Dill’s behalf though.  And Tig knew what it would mean to me so he went through all that just for my smile.  And it has carried over to today.  Today has been one of the best days I have had in 10 days.  And it is because of that amazing gift.  I could go on and on about what else Tig has done, but… well… I like to make him blush but I don’t want the ego to get too big.  🙂

Family.  My family is walking this nightmare with me.  Whether it is my parents, grandparents, siblings (and in-laws), cousins, aunts and uncles.  They are all watching helpless and seeing the nightmare unfold around them too.  But they made the trek yesterday to come up, to help with kiddo’s party, to be here to support me.  To send me notes of encouragement and love.  To make me laugh with silly images.  To give me a shoulder to cry and complain on.  To say prayers for me. To remind me that I am not alone and they are here for me.   It meant so much to have my siblings (and in-laws) and parents and nephews at kiddo’s party.  I can’t remember the last time we were all together and laughing like we were.  It is good to the heart to come together like that, even when the world seems like it is crumbling.  Heck it is probably the most important time.

All of my other friends.  There are too many to mention and I hope none of them are slighted by not being specifically called out.  That is not my intent.  Those that are praying for me.  Those that send me texts of funny images.  Those that check in to see how I am doing.  Those that are just there for me.  Those that call.  Those that send love.  There is a community that has come up around me.  There is a community that has surprised me by the amount it cares.  And for that I am blessed… so incredibly blessed.

God.  I should mention him.  I am still grumbly at Him.  I am still mad and feeling like Job.  I am still feeling unfairly treated and I am honest enough to admit that.  However I do know He has this in His hand.  I know something good will come out of this.  And maybe the things above are it and maybe there is more to come.  And maybe I will never know (Gosh I hope I get to know).  He has this under control.  I may not understand it, I may not like it, heck I might just hate it, but it is under His control.  And it is just my job to take a step each day.  Even if it is a grumbling step… 🙂

So there you go.  My list for today on the good things coming from waiting to find out about cancer…..

Waiting to find out if you have cancer sucks

So over a week has passed since I found out the options I have ahead of me.  Will I find a unicorn?  Will I find I need surgery and chemo?  Will I find out I have to manage cancer in my body for the rest of my life, for however long cancer will let me live?  9 Days to ponder mortality.  9 days of extreme stress, anxiety, trying to pretend nothing is going on, not letting the kid see what is getting at me.  9 days of Hell!  There is no other way to describe it.

My heart needs to let out some of my thoughts. My brain needs the thoughts out of it.  I need it to end.  Needless to say, I do not expect this to be a happy, uplifting post.  Consider yourself warned.

So Tuesday I had a biopsy of my adrenal gland.  Let me say I never EVER want to see the person who did my biopsy ever again!  I can’t state that strong enough.  Bedside manner was terrible.  I didn’t know my mass on the gland was huge, thanks for letting me know.  If my doctor wanted me to know that she would have told me thank you very much.  Your description of the procedure was so horrendous the nurse that gave me the mild sedatives came over after and explained it all better to me.  (The nurse, oh my gosh he rocked!  He qualifies for sainthood in my book).  Oh and let’s not forget that the dr that did my procedure didn’t see if I was numbed enough, and we found out through my scream of pain that I wasn’t.  Oh and I forgot to add that he hit the bone about the same time.  The nurse though, he came through to the other side of the CT to hold my hand and wipe my eyes after that happened.  He distracted me and comforted me.  He got me through it.  Because let me tell you I almost got off that table and said enough is enough after that, it hurt that bad!

So I still don’t have results from that. Tick tock goes the clock.  Tick tock my brain and heart jump at any unknown phone call, hoping it is a result being called to me.  No luck so far.

Friday I had a PET scan.  Thankfully that one was uneventful.  Radiated sugar… wooohooo.  Looking at everyone else who goes to get it done being these cute old grandmas and grandpas.  All having 40-50 years on me.  And here I am sitting there at 37 going, why the hell me?  Did God forget to do the math right for my lot in life?

And then I see all the people in my life with someone.  Please don’t get me wrong, my friends have been amazing.  So incredibly amazing and I can’t ask for more.  They have blessed me in ways that I don’t know how to ever be grateful enough or say thank you enough.  But at the end I am still single.  At the end I don’t have someone at home to help with the day to day burdens.  I don’t have that one person to go to all my appointments with me.  I know my friends would and they have.  But it isn’t quite the same. Last time I had someone walking side by side with me.  He would take me on dates to forget.  He would hold me and kiss me and help the world disappear.  And this time I don’t have it.  And now the path I have standing ahead of me, I don’t see someone wanting to be my significant other.  Who would want the girl that is facing this?  Let alone for the second time?  Who would want the girl that could lose her hair from chemo?  Who would want the burden to stand beside watching someone become ill from the poisons?  I just don’t see it.  I can’t see it?  I am a leaper now.  I am an untouchable.  I am an undesirable.  And this is the lot I am looking ahead to.  And it breaks me.  It breaks my heart so bad.  And there’s not one thing I can do about it.  This is my lot.

So here I lay, typing this.  Still no closer to knowing what is going on in my body.  No closer to knowing if cancer is going to shorten my life in the near future.  No closer to having someone beside me holding me.  And this is what everything has become.

So the past 9 days, these are the thoughts I have had.  Not even touching on my thoughts pertaining to kiddo.  That’s a whole other sob story.

Horse and apples

Today I had Dill (my half lease horse) bobbing for Apple quarters.  I needed the laugh. I needed the smiles.  He seemed to enjoy it too. When I first leased him he’d become vacant eyes with me, and now he’s doing things like this.


I’m so happy with him.  My time with him is a buffer from everything going on. I can’t remember or think of them.  With him, it’s just him and me.  He’s my blessing.

 

Quarterly Cancer Check Up Gone Wrong

So my hiatus from here was long.  I have a feeling it will become frequent again.  On Friday I had a dreaded Quarterly Cancer Check Up.

For those of us who have to go through this routine torture, it is nothing short of torture.  When you don’t have this appointment looming, you forget about the anvil over the head.  You forget that there is this huge risk to your life that you are always facing.  However, leading up to the checkup when you have to do whatever tests they want you to do, you are reminded with the very real reality that something may be going wrong with your body.  Something completely out of your control.  So for a few days before that appointment you are scared, nervous and just overall unhappy.  At least that is how I am.

So I am patiently sitting in the exam room.  Okay, maybe not patiently.  But I am sitting there.  When my oncologist walks in I can tell there is something wrong.  She is usually very upbeat.  She is usually smiles and “how are you doing?”.  Not this time.  She gets right to work.  She bombards me with questions:

Have you had any surgeries since I saw you last? – No….

Any major illnesses or accidents since I saw you last? —  I fell from my horse, does that count?

And on and on she goes.  Finally I ask what my results were.  Then she turns and looks me in the eyes and says “We need to talk about that, it isn’t good.”  My heart sinks.  My world stops.  Everything ends.  She goes on to tell me that my blood work had some oddities in it.  I am anemic which is odd for me.  Also the cancer trackers in my blood are elevated (which they never were even during my last bout with cancer).  Then we discuss the CT scan I had done three weeks ago.  There is a mass on the adrenal gland and/or lung.

Everything ends.  Tears slowly stream down my face.  It is back.  I have something again.  Somehow my body has failed me again.  I run through my brain as to how I am going to handle it this time.  This time I have no significant other.  This time I am single.  This time I am alone.  I am away from my family.  I have a new job.  I have no money saved up as cancer ate a lot of it last time.  I don’t know how I am going to do it this time.

We continue to discuss what the options are.  What we are going to do.  The next business day (tuesday) I will be getting a biopsy of the mass.  Friday I will get a PET scan of my whole body.  The following Tuesday I will meet with my doctor to talk about options.  So the outcomes as we see it right now rated rarest to worst

  1.  No mass is actually there and thus no cancer—-  this is like asking for the unicorn
  2. It is a new form of cancer which we will attack and take care of appropriately
  3. It is colon cancer that has now spread through my body and there is no cure.  I will need to manage it for the rest of my life.  –  This is the nightmare.

So while I hope #1 I know it is completely unreasonable, but hey I still hope a little.  #2 is the best/most realistic option.  and #3 is the nightmare.

There is a huge part of me that doesn’t want to fight any more.  There is a huge part of me that said I wouldn’t do chemo again.  That I didn’t want to go through abdominal surgery again.  I don’t have much fight left in me.  The last 2 some years have drained it all.

But at the end of the day I know one thing.  I will keep fighting.  I have no choice.  Kiddo needs her mom and I will do what I need so she doesn’t lose that.  I may be unhappy.  I may be furious.  I may be debating changing my name to Job.  But I will keep taking steps forward.  I will keep trying.  I won’t be happy about it.  But …. well it is what I have to do.  Liking it has nothing to do about it.

Tree defies logic
If this tree can defy logic, here’s to the rest of us doing the same.