Tag Archive | Chemo

Faith over Fear

#ALMOST THERE 

 

The day is getting sooo close I can almost taste it.  What a journey it has been and one I would never want to do again.  My life has been turned upside down and I’m not sure if I’ll ever be able to fix it or get back to where it was. . . I can only hope. 

I have 2 weeks and 2 days left. Yes, I have started counting the days.   I mark them off on my calendar.   I have a big pink ribbon marked on the 3rd.   I can’t wait to put a huge ‘X’ over that date.   Looking back, the time has flown.   But going through it day by day, it has drug like a slow locomotive train.   If that even makes any sense.  My nerves have been very calm.  I’m not over anxious like I thought I would be.  Earlier this month I was so anxious for the end to be near,  I was driving myself bonkers.  I can’t believe how calm I have gotten.   I guess it’s because I have such strong faith.  The day will come.  I know it will.   Lately, I don’t talk about it anymore to my people at work and I no longer stay in my room.  I force myself out of there and to do things with my son.  Regardless of how wiped out and drained I feel.   I don’t want him to feel so overwhelmed and stressed like he did.  That scared me way too much.  

As I prepare for my time off of work, I was slapped with the horrible reality that, ‘I WON’T be able to take time off.’    WTF!!!!  What exactly does this mean?    It means, “you can’t take time off.”    WHATTTTTTTTT?!?!?!?!  😱 😭  I don’t understand!!  Help me understand.  Well, it goes like this.   You don’t have enough hours from your last leave of absence (broken ankle)  for this leave to take place.   Not enough time has passed.  There has to be 12 months in between and you need 1250 hours.   I can’t breathe.  Are you kidding me?!?  I’m lost.  I don’t know what to do.  I have been working all through my chemo (and it hasn’t been easy), from the very beginning of my diagnosis and this is what is in store for me?  I still don’t understand.  I have worked myself to the ground, because I have to.   I am soo worn out, my health is on the line.   I speak to my store director about this.  Me – “There has to be something we can do.  As a 25th year veteran of the company, I believe I am a valued employee.”    Him – ‘Yes! you are!  But some rules I have no control over.”  That’s how our contract is and FMLA.  I can take a chance with time off, but it won’t be secured time off.   In other words,  since I can’t do time off through FMLA, I can take time off but my position won’t be secured nor will my rate of pay or my seniority.   *deep sigh*   😢 Well, who wants to take that chance?   I need my job and of course, insurance, but it’s something he can’t override.   Now what?     Me – “What can we do?  Will you help me figure out something?  I can’t continue working like this.   I’ll never get better.”  Him – “Yes, we’ll figure it out.”  This adds to my already high stress level.   Other than the obvious, there are other stresses.   My bank won’t help to bend my mortgage payments for a few months and other things just haven’t worked out.  I swear, when it rains, it pours.   I’m at such a loss with life.  I don’t know which direction to go.  I almost feel like giving up, but I can’t.  My inner soul (the fighter in me) won’t let me.   I’m so unhappy with how things are going.  There has to be a way out of this whole mess of my life. 

 I leave after my work day is done and head on over to the district office to see what and if there is something we can figure out.  I have a hard time believing that I can’t take the needed time off without consequences.  I didn’t ask for this.   It’s not my fault that breast cancer decided to hit me just a few months after a broken ankle.  What about other people who get very ill multiple times a year and need time off?  What do they tell them?    Too bad??    I refuse to believe that! 

 As we go over the past year of my life and my accumulated hours, we try to figure it all out.   Maybe there is a chance I had enough,  it looks that way.   I sure hope so.   Several calls need to be made out to make sure what the exact rules are for the company.  I will find out soon.  

 I get that phone call.   Nope. . . I don’t have enough hours and 12 months has not passed.  I’m shit out of luck.   What else can I do?    

I keep pushing forward and I continue working.  I’m sooo drained 😥  my only option is to keep working.   I’m so tired of stressing over things.   I don’t wanna stress any more. I want things to go back to normal.

Round 10 – Well, I only have 2 more to go.  I marked another day off of my calendar.  That pink ribbon on the 3rd is getting closer.   The fatigue has been hitting me hard and the stress doesn’t help.   I am not sleeping at all.  I have so much on my mind.  The nueropathy in my feet and hands has gotten bad.  My feet feel swollen but they’re not.  My fingernails have turned an ugly yellowish color and I started getting ridges on them.  They have started to pull away from the skin and I’m afraid I’m going to lose them.  I keep bandaids on them, especially when I’m at work.   On a brighter note, I have fuzzies growing all over my head.  you could never tell though cuz they are baby fine.   But yes, they are there.   The heat has been pure torture for me.   The chemo that I’m getting causes your body temperature to rise.  The hot flashes feel like I’m in the fires of hell and I get those like 15 times if not more a day.   Its a heat that comes from the inside out and just flushes all through me.   Its awful.   I’ve had a hot flash here n there in the past but nothing like these ones.  It’s making me hate summer sooooo bad.   The chemo also causes your pain tolerance to be at an all time low.   No wonder I have been suffering so much with pain.   My eyes don’t get so blurry anymore and my mouth not as dry but I still have those mouth sores and it’s already been a month straight.  None of the mouth rinses help anymore.    Oh the joys of the side effects. 

 I’m off to the district office once again.  This time, I am given some helpful information. I was given a glimmer of hope.   Something called ‘seniority leave.’  As long as I have worked for the company, I have never heard of this.  Yes, it is in our contract.  I read it word for word.   I don’t need FMLA for this.  Really?  *gasp*  I try not to get my hopes up.  Every time I do that, they just get crushed.  So, even though I got a bit of excitement, I’m gonna take this at face value.  But i can’t help but wonder.   Why wasn’t I told this before?   Do you know how much stress this information would have saved me?   Why doesn’t everyone know about this?  All I need is to get a doctors note.   Well guess what?  A doctors note they shall have.  I see my oncologist next week.   I’m going to ask him to take me out of work.    Fingers crossed. 

July 21 – Got up feeling fantastic.  Since I just had a round of chemo the neuropathy has my toes feeling very tingly.   It does help a bit to elevate them.   So,  I’ve been doing that.   This side effect worries me a bit cuz it can turn into irreversible nerve damage.   Ouch, I can’t imagine having that in my feet or my hands all the time.   My energy level is awesome today and my appetite is great.  Ugh,  damn you tongue sores!!  When will you go away?!   And I just wish and wish I could get some restful sleep.  Getting closer 😃 

22th – had another great day!  Again, I just wish I could get some restful sleep.   Running on fumes is getting to be very hard.  The hot flashes are getting worse especially at night.  I run my beanie under cold water and put it back on for some freshness and to cool off.  That seems to help some.  Energy level is still pretty good.  Ran some errands with my son, had lunch and got some ice cream.  We got in the pool for a bit, let the floaty take me around.  Overall, things with chemo are pretty good.  Don’t wanna speak to soon, but I think my tongue sores are trying to go away.  They haven’t been so bothersome and they do feel smaller.  I hope.  I’ve really hated those.  They are so painful 😧  The tingling in my toes isn’t bad at all today.  I barely have any.  I still elevate my feet whenever I can and no tingles in my hands or fingers.   Yay!!! 

 Sunday – 11 more days til the end.    I finally started to slowly pull my favorite customers to the side and tell them what’s been going on with me and that they might not see me for a while.  The ones that I couldn’t talk with, I just got their number to call them later.   Oh goodness!  Were they shocked, some sad but very supportive.   I also started telling a few coworkers.  To this day, still, the only ones who know are the 4 I told at the beginning and the one I told mid way through.   How I’ve managed to keep that secret is beyond me.  It’s allowed me to keep things as normal as possible but the whole charade has been stressful.    I can’t wait for it to be over.   It’s awful when you’re asked how you’re doing in the checkout lane and all you do is smile and say, “I’m doing okay.”  When really, you’re whole world is turned upside down.  I hate how things have been but I’ve managed to keep it together.   

I’ve been tempted to spill the beans to everyone (family & friends) on facebook.  I HAVE NOT mentioned anything or even hinted about my situation over social media.  A huge part of me finally wants to let it all out but that other part of me that still wants peace and privacy keeps me from doing so.   A high school friend posted that she was recently diagnosed with breast cancer.   Oh how that broke my heart.   She has such a huge journey ahead of her.   I have so much to share with her but I don’t want to overstep.  If she asks, I’ll share.   I can’t help but think of all the unpleasantness that’s ahead of her.  It saddens me very much.  She will be in my prayers til she makes it to the end.    

My friend Tammy keeps reminding me to take care of myself.  Not just physically but mentally.   She’s always telling me not to forget about my mental health.  That even though I’ve been a tough girl through all of my chemo, my mental  & emotional health could take a beating.  Dealing with cancer, work, family and me (physically & emotionally)  is A LOT.   I told her I was planning on taking myself out of work.  She was happy about that.   She said I needed that time to heal.   I totally agree.   Mentally and emotionally I’ve done very well.  I haven’t fallen apart.  This worries her cuz I haven’t let it out. I haven’t ‘dealt’ with it emotionally.   I’ve kept things bottled up inside.   I may have a hard time later,  like she did.  There’s a chance I might get depressed.   I listen to everything she tells me,  all her advise.   She should know, she went through this herself.    Physically, everything that I’ve gone through with chemo is spot on to what she went through.   So,  naturally, its safe for her to say, I might get effected emotionally as well.   For me, I just don’t see this happening.   I’m too happy of a person to feel depressed.  I just don’t get that down.  I get sad and yes I get down but never enough to say I feel depressed.   But since she put the thought in my mind I can’t help but hope I come out of this journey unscathed.  I hope things go back to normal.  She says things never go back to normal.   It’s a ‘new’ normal we have to get used to.   What does that mean?   A ‘new’ normal?  I don’t want a ‘new’ normal.  I want my regular normal.   How I was before all of this.   The thought stays stuck in my mind.   

26th – Today I feel wrecked.  I’m just over tired.   I have a round of chemo tomorrow and my LAST one next week.  Plus, I see the doc tomorrow for my last examination.   Oh how the days are starting to drag.    I told them at work that my plans are to go out of work on the 31st.  I’m taking the ‘seniority’ leave of absence.   I’ll need to use all of my vacation hours to hold on to my insurance.   Luckily I have 2 months worth.   So at least I know I’ll have insurance for the months of
Aug & Sept.   Hopefully surgery and radiation will be done in that time frame. 

My older brother invited Dominic to go camping.  They’ve been planning for a few weeks.  They leave tomorrow until Sunday.  My son needs this.   He needs some breathing room.  I think he needs space from me.  He sees me struggling on a daily basis and I feel he just needs to get away.  this will be good for him.  They’re going to Heron Lake.  How fun.  I just love camping and being outdoors.  But this damn chemo and effects from it have kept me from doing just that.  But I think I’ll meet them up there on Friday since tomorrow I have chemo.   I’ll go on Friday and come back on Saturday.  If I feel okay.  I want my son to enjoy himself and have the best time.   He needs a fishing license and to pack.  

July 27th –  My son leaves to go camping for the weekend.   Gosh I’m gonna miss him.  I haven’t been by myself this whole summer.  I hope I don’t go out of my mind.  I should be okay.   “Bye my Lovey, have the best time!  I hope to see you tomorrow!!”  😍 😘

Today I see the doctor.   Examination day.   YAY!!!!   Excellent news!   The lump is no longer there.  This news puts me over the moon.  I.am.sooo.excited!!!   This has been the journey from hell.  Oh how I have hated it with a passion but the chemo has done its job.   As horrible as it has all been,  the chemo did what it was supposed to do.  It killed the lump.  I’m so happy I’m almost in disbelief.   Since February, all I have gotten is bad news.   I’ve been praying for this.  I didn’t want to go through this and not come out on the brighter side of things.   I didn’t want to do it for nothing.   Now, I can actually be thankful for chemo.   How odd to really say that.   Oh chemo, you have been such a misery but thank you for killing that lump.  Thank you for giving me some hope to still live.  Thank you for my life.   It was worth it.   You tried to put fear in me but my God is stronger than you,  I chose faith instead.   

~~FAITH OVER FEAR~~   

 I ask the doctor if he will take me out of work.  He said that I had done so good, why now?  I told him that i was just too worn out.   Too drained and I didn’t want to continue putting myself through that misery during surgery and radiation.   It was time for me.  Time to start healing.  To rest and get better so I can be %100 again.   At first he told me ‘NO’.   lol   he was only kidding.  But he agreed to take me out.   Yay, I got my doctors note.  My return date is Nov. 1.   That should give me plenty of time.   Time enough for surgery, radiation, healing and to get back to ‘me’.  I’m so happy 😃

  I am off to do my 11th round of Taxol with renewed energy.  My ultrasound, mammy and a visit with the surgeon is scheduled for Aug.  What a great day it is.   After my chemo, I was feeling so good Clara Sue and I decided to go shopping.   Hobby Lobby.   Oh Jesus.  I love Hobby Lobby soooo  much,  I need to be kept away from there.  haha.   I need adult supervision in that store.  I need to be held by the hand.   I’ll buy everything even with money I don’t have. . . . .but we went  😛 

It’s been a great day, even though I was by myself for the rest of it.   Think I’ll get some things ready.   I think I will go camping and meet them up there.   It’ll be a boring long drive by myself but maybe it’ll be good for me.  I know getting away certainly will be.  I get my nephew to house/animal sit. 

 ONE MORE TO GO!!!!!   I can’t wait!!   

28th –  I get up and get ready to take off to Heron Lake to meet my brother & fam and my son.  I feel pretty good.  I’m excited.  I can’t believe I am at the point where I can truly say, “I have one more round to go!”   I  didn’t think I would ever get to this point.  When I’m done, that’ll be 16 rounds.  16 rounds of poison that got pumped through my body.   16 rounds that killed everything in me including the good stuff.  But I’m alive.   I’m still here and I hope to be for many more years to come. 

 My nephew comes to house sit and I’m off to the Lake.  Me, myself and I with just my thoughts and good music.  I should get there by 4:30.   2 hours in,  ‘ I am really enjoying this drive’.  It helped to clear my mind.  It helped to push out all the stressful and negative stuff that I’ve been going through.  I love jamming out in the car to good music.  About 20 min to go,  Wow, look at that storm up ahead.   It looks mad and threatening.  I’m gonna drive right into it.  It looks so angry and mean.  The sun went away and it got so dark.  The temperature is really dropping.  It was in the high 90’s went I left.  Now it’s already in the 70’s, geez, what a difference.    I wonder if they’re getting poured on at the lake?   Here come the rain drops.  Okay, now it’s coming down harder.  What the heck,  it’s hailing.   Now I can’t even see.  It’s coming down so fierce with big hail, I’m forced to drive like a turtle.   I can barely see the brake lights of the car in front of me.  This is creepy.  I’ve never been in a rain/hail storm like this.  Good thing I am almost there, I know the turn off is coming up.  I must not have phone service, my brother is not responding.  Or he doesn’t have any.   This is horrible.  The hail is gonna crack my windows it seems like.  The lack of visibility is making is very scary.  Oh good, there’s the turn off, almost there.   Things look familiar.    OH SHIT!!!!!!    I turned on the wrong one.   Couldn’t see the signs at all.   NO NO,  I don’t want to go this way!   I tried to correct myself and turn around.   It was raining so bad that everything was nothing but ugly muck.  As I was turning to correct myself my tires caught the edge of the slippery road and I slid off into the mud/muck.    I slid right off the road.  I can get out, I’ll be okay.   *tires spinning and spinning*    I AM SOOO STUCK and I’m sliding further in.   It’s raining too much.   No one is stopping to see if everything is okay.  They are just driving by.   I call my brother.   No service.   What do I do??   My tires kept spinning and because of that I managed to turn my whole vehicle around, I did a 180.  From one direction to the other.  It’s no use, I’m not gonna get out of here.  I started having a panic attack.  Here I am, a cancer/chemo patient,  in the middle of no where, stuck in the mud on the side of the road (vehicle facing the opposite direction) in the pouring rain by myself with no phone service  😭😭😭   For almost 1/2 an hour I tried to get myself out (only making it worse).   I should already be there.   They’re gonna start to worry.   I started breathing so heavy from the panic I’m surprised I didn’t pass out.  I couldn’t even get out of my car the mud was that deep.  I sent a text to my brother, maybe he’ll at least get that.   “I’m stuck bad, come get me”.    It was no use.   I put the car in park and just sat there.  One by one the cars drove by.   I tried not to think bad thoughts but my mind is an asshole.  What if someone stops and they turn out to be a creeper?  Oh Lord, please help me!  The cars are going East & West, I’m facing South.   No one bothered with me.  This is just like how my life has been going.  Of course I would get stuck.  Nothing outside of chemo has been turning out right.   FINALLY a couple stopped, rolled down their window and asked if I was okay.   I was okay, over stressed and panicked but very stuck.   The man got out, tried to help but I was going to need a tow strap or a chain to get pulled out.   My AWD had failed me.   I was sooo stuck.   When another couple passed in a heavy duty truck and saw the man trying to help, they too stopped.   Luckily, he had a tow strap and by this time the rain had stopped.  My brother responded, he got my text.   He’ll be right there.  I told him some people were trying to help.   The man couldn’t get under my vehicle with the way it was positioned and he was too burely to do so.   His wife was small enough.   She pulled out her rain boots from the truck, put them on, got in the mud and under my vehicle and hooked me up.   Another person stopped and asked if we needed more help.  They got in their truck and pulled me out ‘just like that’.   The other couple hung around to make sure that I was okay.   I was out.   What a relief.   The wife got so dirty and messy but she helped anyway.   Thank you Lord for sending such kind people.   Yes, there are still lots of good ones out there.  I am so grateful.  What an ordeal.   My brother showed up just as they were leaving.  We turned around and went back to the camping site.   They hadn’t had a drop of rain.   Funny how that works.    It could be pouring cats n dogs and just a mile or so away, it’s dry as hell.   Yup, that sounds just like my life.   Exactly!!  We got to the campsite.  Nope,  no rain but it looks like it’s coming.   I had gotten so stressed and panicked that I couldn’t enjoy the rest of the day.   It was passed 5:30, I should’ve been here over an hour ago.  My son got so worried about me.  I did my best to enjoy.  The ordeal left me wiped out.  I was sooo drained.  Why can’t things go right for once???    The outdoors, the smell of rain and the fresh mountain air slowly started to ease my troubled mind but it took forever.   That panic attack I had seemed to settle in my bones.   *sigh*   All I want is to have a good time.   It wasn’t supposed to start off like this 😔  My life’s situation makes it so easy to get stressed and stressed I felt.  I didn’t have the energy for that kind of episode.   Time for a walk.  I need to breathe.  Here comes the rain.  I feel worn out.  Enjoy yourself Lovey, don’t worry about me.  As long as YOU have a good time.   

Earlier in the day he had caught 2 fish.   But one got away and the other was too small so he let him go.   He came out empty handed.  He was bummed out.  Better luck tomorrow. 

29th – Couldn’t sleep worth a darn and it rained good through the night.   The stress from the day before left my body achy and hurting.  I didn’t feel good.  Oh well,  time for breakfast over the campfire and let’s go fishing.   Dominic wants to fish out of the Chama river.   Let’s go!! 

Coopers Ranch – What a great sight.   It’s beautiful here and it smells wonderful!   I love the smell of mountain air.   The sound of the running water from the river is amazing, its so soothing.   I soak it all in.   It makes my soul feel great and the sun is shining.   This is just what I needed.   My brother drove and we all piled in the truck.   So I didn’t need to worry about any mishaps.   On the way here we passed where I got stuck, geez,  what a mess it left.  A road sign is knocked down.   Did I hit that trying to get out??  I don’t remember doing that.   Thinking about yesterday made the stress come back.    I need to focus on the surroundings.    *sucks in breath*  look at the elk.   I love wildlife.   I love the outdoors.  

 Back at the river – We find a great spot.   Man there are lots of people here.   Dominic and my niece get their lines ready and throw them in.   Good luck, I hope you catch something.    Look at the fish jumping up!   It’s like they’re saying, “na-na na-na boo boo, haha, just try and catch me!”

 

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This is how my son catches fish!

 

 

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What a life! 🙂

 

He got a couple of bites, but no luck 😦    He was very disappointed.   After a few hours he got tired of not catching anything so we decided to go for a walk.   It was Dominic, my niece and myself along with my nieces’ pup.   We crossed the Swaying metal bridge suspended over the river.  They went first.  I was holding the dog so his paws wouldn’t get stuck and I started to cross.  Holding the dog, I went while they waited for me on the other side.   Oh my goodness!!!   The rapid flow of the river and the swaying of the bridge threw my head in a tailspin. I got soooo dizzy, I thought I was going to pass out and fall right over.  I couldn’t get my bearings.  I thought it was all over.   I was thinking, “I’m going to fall in the river and get swept away”.   That has never happened before.  It was like motion sickness.   It must be all the medication I’m on.  I’m gonna die trying to get across.   I had gotten half way and almost couldn’t go anymore.  It felt like I had made a bad decision.   I can’t believe the way it made me feel, like severe vertigo.   It just wouldn’t stop spinning. After what seemed like forever, I got across.   That was horrible.  It made me feel scared.   I hate all these changes.   I always enjoy stuff like this.   Grateful that the dog and I made it across, I had to sit down and let my spinning mind come to a stop.   Believe it or not, I was afraid to go back.   We climbed up a rock that seemed to take all my energy and just sat there.   What a nice view.  Why can’t I just be able to enjoy things without something to blow out the happiness?    After some time up there we climbed back down.   Geez, that was hard for me.   Now to go back across.  I don’t know if I’ll make it.  This time, Olivia carried the pup and I was able to hold on to the sides with both hands.    Here comes the spinning again.   Oh I hate this.   I made it but again it felt like I was gonna fall right over.   This was a bad idea.  I’m worn out and ready to go back to the campsite.   After my brother had caught some more fish we packed it up and left for a drive.   We went to El Vado Lake just for some sights.  Here come the mean clouds.  Looks like the rain is on its way.   Yup, we drove right into the downpour.  It was just like yesterday but without the hail.  We got to El Vado and just drove around.   After a bit we found such a nice quiet fishing spot down below to maybe check out next time.   It was a bit of a walk down the mountain but it looked perfect.   Everyone started walking down.   I started but only went half way for fear I wasn’t gonna have the energy to walk back up.   How depressing.   It’s depressing when you can’t do the things you’ve always enjoyed.  When you can’t take a walk or hike or climb up a mountain cuz you might not have the energy to make it back.   I started breathing heavy.  As much as I wanted to, I just couldn’t.   I watched from above.  I watched as my son skipped rocks on the lake.   This is heartbreaking.  I want to be involved.   I want to be normal again.  I’m missing out and it’s making me sad 😢  No matter how hard I try, I just don’t have the energy.   I took pictures from afar.    

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Walking back up left me spent.   I had the shakes and needed to sit down.  My brother gave me a stick to use for support as I walked back up.   My situation has me miserable.   Next summer I wanna do this all again as a happy, healthy human being.  Where I’m able to have fun and enjoy it and not worry about passing out or not having energy or whatever.   This journey has been the bane of my life.   It has robbed me of so much happiness.   I’ll say it again,   “I can’t wait til it’s all over!!!”  5 more days.   I know the chemo is saving me but I can’t wait for it to be over.   

Back at campsite –   I know my visit was short but I need to leave.   I have work early tomorrow.   And I need to rest.   This took it out of me.  I was planning on leaving and we got hit with a downpour that lasted for a couple of hours.   As I got ready to take off, Dominic decided he was gonna come back home with me.   He got so worried with me getting stuck yesterday, he didn’t want me driving back home alone.   So, he packed his things and came back with me.   I felt like I had ruined his trip.   But we came home.   The 3 hour drive didn’t help but, oh well.    Got home beyond exhausted and I paid for it the rest of the day.    Thought I was gonna sleep like a champ from it all,  nope. . . . couldn’t sleep a wink.   Dominic didn’t say anything and honestly, I think he was happy that he came back with me. 

Sunday – July 30th –   Oh man!!  I got up feeling horrible.  I can’t move.  I hurt sooo bad but I have to go to work.   A few more days.   The day was rough for me.   Talked to a few other customers and told them I’ll be going out of work.   I went home miserable.   A few more days and I’ll be all done.  A few more days and I’ll be out of work.  I am almost there.  I know I can make this to the end.   Can’t quit now, I’ve come way too far.   Thursday, I can’t wait for you to come.   When I am all done, I’ll be a week and a half shy of 5 months of chemo.    5 months of pure hell and misery and torture I have never known.  I’m just a few days away of having my life back.   I’ve missed my life how it used to be.  I want to do so many things when this is all over.  I pray for Thursday to come quickly.   I pray for things to go smooth and I pray to feel better.   I sure hope my mental and emotional health don’t suffer.   Why is that thought so stuck in my mind?   I have a feeling I’m gonna fall apart, have a breakdown.  I haven’t really cried while I’ve been going through all of this.  I haven’t let it out.   When I ring that bell I think I’m just gonna crumble.    I need that release.   I need to cry a million rivers of tears.   What a relief that’s gonna be.   My chest is just gonna cave in.  I know it is but that’s okay.  I’ve been a strong woman through this all.   I’ve kept myself going and working with sheer determination.   By the end of the week my chemo journey will be all over.  Next week at this time I’ll be free from the horrors. 

July 31 – Well today was supposed to be my last day of work.   But once again I was slapped in the face with the fact that I am short on my hours to keep my insurance while I’m out of work.    Eff me!!    Is it ever gonna stop?   I feel like I just keep going in circles.  Like if someone is working against me.    I don’t need much so I guess I’ll work til the end of the week. 

As strange as it is I feel pretty good today and still as calm as ever.   All my pains from the weekend camping trip are gone.  Yay!!!   I turned in all my paperwork for my time off.   I just need to gather some more hours.   

Tuesday –  2 more days!!   I feel pretty amazing.   I’m almost in disbelief that the end of this journey is near.    Is it really happening?       

Something keeps nagging at me.   I hope I don’t come out of this too damaged or too emotionally scarred.    I share my concerns with others.   Why is that starting to bother me so much?   I hope I’m still the same person I was before.   Whatever this ‘new’ normal is supposed to be, I hope it makes me happy.  I guess we shall see. 

 I wrote out what I want to say to everyone on facebook but I just haven’t posted it yet.  I really put time and effort into to what and how I wanted to say it.   Gosh, I’m gonna shock them all.   I hope they understand.   Family on my Moms’ side don’t even know.   Even though I’ve told a few more people, my circle is still very small.  I think I’ll post it tomorrow.  The day before my last treatment.   

Well, you could never tell but the fuzzies on my head are really growing.    I still look bald but close up you can kinda see.   I can’t wait for real hair to grow in so I can get rid of this dreadful wig.   I’m starting to hate it.   I think I might like having short hair.    Who knows.   I wonder if it’ll grow out straight or come out curly like I’ve had?   I’ve been told it could grow out way different from how it used to be.    hmmmmm.   My tongue sores have not gone away.   geez, that’s going on like 7 weeks now.    Soon,  my mouth won’t feel yucky anymore.  I’ll be able to taste all of my food and it won’t be dry.   My eyes will be normal.  All of those medications will stop, including the steroids.  Maybe I can actually start getting some sleep.   I’m looking forward to sooo many things.   

The pic below has been a hard one for me to share.   It’s a few weeks old but I’m gonna put it on here.   It’s the reality of my life.  How things have come to be.   I know it won’t last forever.   I just need to give it time and be patient.  

 

 

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Baldy

 

My Reggie!!  He always lays with me to make sure I’m okay.   I think he can feel my distress, as of late.   

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Wednesday – One more day!!  One more day!!    Ahhhh, Is the day really tomorrow?   Strangely, I’m still finding it hard to believe.   Why is that?   Did I really make it this far?  I’ve waited for sooo long it seems for this day to get here.   I’m excited and still very calm.     I took this picture of the bell last week.   Soon,  I’ll be ringing it.   I’ve asked for all of my ‘crusaders’ to be there.   No ifs, ands or butts.   It’s important for me.   We are all gonna ring that bell together.  For they have all been with me.  I CAN’T WAIT!!!!! 🙂  

 

 

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The bell!

 

With a little bit of hesitation, I posted my news on facebook for the rest of my family and friends.   No, it didn’t go out to the world.   It went to ‘MY’ people only.    I have been carefully writing that out like if it was a school paper.   A rough and a final draft.   I selected careful wording.   I didn’t want it to be so rough of a blow.   I can only imagine when they read it.   I have tried so hard to keep my life normal.  Like my Auntie said, “sheer determination”.   With no one knowing.  Cuz I didn’t want to talk about it all the time.  I didn’t want that to be the topic of conversations.   I’m ready now.   It’s time to tell them.   I cried as I put it on there.    It’s posted.  Here we go.  Please don’t be upset cuz I didn’t tell you sooner.   I hope you understand.  I’m fiercely private.   I love you all ❣ ❣ ❣

 

 

 

Is it true? ?   Do I really get to ring that bell tomorrow?!. . . . . . 😃 😃 😃

 

 

 

 

It’s my battle and I’ll cry if I want To

My day was going sooo good. . . . . 

June 6 – 

Woke up in a great mood today and feeling pretty good.  My energy doesn’t get too low like before so I think those crazy worn out days are behind me.   I hope so anyway.
Whenever I have a good day, I need to take it and run with it.  I don’t feel as fatigued anymore but sometimes it takes me by surprise and leaves me in bed all day.   Since today feels like a ‘normal me’ day,  I wanna take my son out on a lunch date.  He’s been out of school for a couple of weeks now and I haven’t really done anything with him.  I’m always so tired.  I’m upset cuz our summer will be tied down to weekly treatments.  There goes all our camping we like to do.  And a trip somewhere will be out of the question.   I’ll need to squeeze in some quality time whenever I can (feel good).   So a date it is. 

We decided on Sadies.    Mmmm we love it there!  😋 Their chili con queso is to die for.  We could eat that like daily haha.   So yes, we feasted on that, took our time, talked and enjoyed our lunch date.   He’s the best date ever!!  ❤💞    I’m stuffed!!  He’s ready to relax.

Later in the early evening I was taking care of a few things around the house while my son played a video game.   UH OH. . .  All of a sudden I’m getting back pain on one side.  What the heck?!   Maybe I twisted a wrong way. . Okay this pain is quickly getting worse.   It’s in the same area as my shingles.  Oh no, I hope I’m not having a recurrence of those.  That was awful.  I take a gabapentin 💊   Those are for nerve pain, just in case it’s the shingles again.  No relief and it’s getting worse.  I take a morphin 💊  Another one that they gave me for shingle pain relief.  That helped me before, so I hope it does this time.  Nope, it didn’t.   How can those two not give me relief?  Ouchie, this is getting really bad  😩  and the pain is coming around to the front.    Am I having appendicitis?   The front pain is right where my appendix is and the back pain is in my kidney region.   Do I have a kidney stone, is it my appendix, do I have shingles again?  What is it????  Oh the pain is out of control and the medication IS NOT working!!!  The pain went from 0 to 10 in a matter of a 1/2 hour.   Something is way wrong!   I send a message to my oncology nurse, Sarah.   Unfortunately, she is not working and can’t ask the doctor.  She has no idea what it could be, it could be any number of things.   She advises me to call the after hours cancer care if the pain doesn’t get better.   By this time I am crying, the pain is so intense.   Dominic walked into the room and immediately freaked out.  He asked, “What’s wrong, you were fine earlier?”   And I was,  I don’t know what happened.   “The pain is horrible!!”    I hate crying in front of my son.  I don’t want to worry him.   I waited a while longer to see if the pain would ease up but it only got worse.  My mind couldn’t stop thinking that it was my appendix.   What if it burst?  I would really be in trouble.  I should go to the ER right now.  But I’m a stubborn ass and I waited.  I did call the after hours and explained all of my symptoms.  They were gonna relay the message to the doctor on call, he would call me back.   In the meantime, I asked a friend, Christine, if she would take me to the ER if I was told to go.  There is no way I’ll be able to drive myself.  

Christine is a very very good friend.   I have known her for several years now.   I met her when my son was in elementary school.  She works there.  Her grandson, Matthew and my son have been best friends since kindergarten.   Through them, she and I ended up becoming good friends.   She has a good heart and shes very caring.  Thank God she was available to take me AND she even lives close by.   The doc returned my call and told me I had to go the ER right away, I could have an infection.  Oh gosh. . not something new.  She picked us up, we dropped off Dominic at her house to stay with Matthew and we headed off to the ER.   The pain had gotten so bad that the bumps on the road hurt me.  I started to shake.  I let Ray know what was happening and he said he would be there as soon as he could.  We got to the ER and it was full of people.  Just my luck.   I hope I don’t have to wait long.  I hate going to the ER.   You wait forever before they even see you.   *sigh*   This has to be the worse pain flare up I have EVER had.  The medication that I took earlier hadn’t helped at all and I can barely walk up to the counter or even talk.   I give them my info and symptoms and get checked in.  I tell them I’m a cancer patient, all the symptoms I was feeling and that the on call doctor advised me to come in.  That didn’t seem to matter one bit.  They looked it up on their computer, tagged me and sent me to sit with everyone else.   It was after 7.  I sat with Christine in the waiting room in excruciating pain that wasn’t getting better.   I kept thinking, if this is my appendix and it burst, I’m gonna be dead soon.   My mind puts me through hell.   Finally they call my name.  I thought I was gonna be taken to the back. . .nope. . . it was only to hook me up to an IV and ask me an onslaught of questions.   I was shaking so bad because of the pain that I couldn’t sit still long enough for the machine to get my proper vitals.   Again they asked what my symptoms were and how bad the pain was.  Geez, how many times do we need to go over this??   Well damn, by now the pain is way beyond a 10!!!  I started throwing up. My tummy got so nauseous from the pain.   I told them that I had already taken a gabapentin and some morphin and it didn’t help.  They gave me an injection of dilaudid 0.5 mg in the IV they had just put in, said it was fast acting, an opioid and some Zofran 4 mg/2 mL injection 8 mg for my nausea.  After that, they sent me back out to the waiting room.   I waited and waited and waited and waited.   That narcotic they gave me barely even touched the pain and only for a moment.   I was back to excruciating pain 😭.  8 o’clock passed then 9, finally at 10 I was called and taken to a room only to sit there for another 2 hours.  Again I was asked another set of the same questions.  What the hell??  And again I couldn’t sit still long enough for the machine to get my vitals.  The pain is horrible!!!!   This is definitely worse than the shingle pain and I thought that had been the worst.   Either my pain tolerance has really been affected by the chemo or this pain is just that intense.   I’m no sissy when it comes to this, so I have no idea what is going on.   It is unbearable and they can’t understand how the dilaudid didn’t work.    At 11:30 the doctor and a nurse came in with 2 more drugs for the pain.  I was grinding my teeth and in tears.  My brother and Christine sat there helpless as they watched me in agony.  This time it was another dose of dilaudid, 0.5 mg AND toradol, 30 mg/mL.  She said that those together should give me instant relief.   I turned down the toradol because it contained ingredients I couldn’t have during chemo.  They said the dilaudid would work just as well alone and I should feel it immediately.  I didn’t before but this time I felt it run through my veins.   It was a warmth that ran through my arms that gave me an awful hot flash that seemed to last forever.  It gave me very little relief and only for a short while.   It didn’t act as fast as they said it would.   During this time I was given a liquid to drink for when they take an ex-ray.  It was horrid, awful and a funky color.    It made me gag every time I took a drink. 🤢   I needed to drink at least half of it.  It was 24 oz.    I can’t even swallow this garbage without wanting to throw up, let alone drink half of it.  I did my best.  They left the room and once again I waited and waited and waited.    Here comes the pain again. 😣 Well that drug didn’t last long at all.  Again I can’t sit still.  The pain has me writhing in the bed like a snake.  What the heck is wrong with me?  And how come none of the pain meds are working?   Where is all this pain coming from?  I wanted someone to take me out of my misery.   The night drug on like a car trying to move with its emergency brake on.   I just couldn’t believe the agony that I was in. 

At 12:20 a nurse came to get me to take me for my ex-ray.  Finally, sheesh.  I didn’t think that was ever going to happen.  I thought they had forgotten about me.    I was only able to drink maybe a 1/4 of that liquid.  Hey, I did my best considering how horrid it tasted.   Oh My Goodness!!  Trying to move from the bed to the wheelchair gave me unimaginable pain and the same from the chair to the ex-ray table.  When is this gonna end?  I had my brother call one of my bosses to tell him I would not be going into work tomorrow.   This is the first time that I’ve called in since I started my treatment and my first call in this year.   I don’t ever call in, EVER!  I hated the idea I wasn’t gonna be able to make it to work.  But there is no way I can work in this kind of pain.  The ex-ray is over, Thank the Lord!!   That was awful!  Okay now to get back in the chair.  I hurt sooooo bad.   I was back to the excruciating pain that I had been in for most of the night and started throwing up again.   Finally at 1 am,  I couldn’t take it any longer.  The pain has just intensified as the night went on and nothing had been working.  I told my brother, “screw it, go get the nurse and tell her I’ll take that other drug that I turned down, I can’t take the pain anymore!”  About a half an hour later she and the doctor came in with it (toradol) and some fentanyl, 50 mcg/mL.   They asked me if I was okay to take it and I said, “yes, I can’t do this anymore!”  So the nurse administered both of them through my IV.  WOW!!  Within minutes I had complete relief.  Finally after hours of intense, agonizing pain, I had relief.  I was able to finally lie in bed and relax.  I stopped shaking and grinding my teeth and my breathing went back to normal.   My heart rate came back down and the machine was able to get my vitals with no problems.   I let out a huge sigh of relief.  A few moments later the doctor came in to tell me I had a kidney stone along with my hiatal hernia.   What?!?!  All of that pain was from a kidney stone?  That didn’t seem right.  I’ve had those in the past, yes they are painful mother effers but they have NEVER put me through this much pain.   I can actually deal with a stone with no problems as long as I have a pain killer and most of the time, I only need 1 pain killer.  This took 6 pain killers before I felt relief, 6!!   I thought that whatever I had was gonna kill me.   It took a gabapentin 💊 a morphin 💊 fentanyl 💉 toradol 💉and 2 doses of dilaudid 💉💉😩  Good Lord!!!    How in the world did I not die of an overdose?  How is it that I walked out of there on my own 2 feet and not half dead on a gurney with babas (spit) 🤤 dripping out of my mouth?  The nurse and doctor left me to rest after the pain killers were given to me.  I told my brother to go ahead and leave, the pain was gone.  It was 1:30 and he needed to be at work at 4.  I felt so bad for him, he didn’t get any sleep.  Christine was still there with me.  She stayed the whole time and not once did she complain.  Even though I told her earlier to just leave me there, she didn’t need to stay, but she did.   I apologized over and over for this taking as long as it had.  She didn’t care.  That’s what real, good friends are.  They stay with you no matter how bad or painful it is or how long it takes.   Or how much you complain about it.  The whole night she stayed right there with me 💖

  The doctor came back in about 2 am.   She said I looked so much better.  The color had come back to my face and I looked relaxed.  I did feel like a whole different person from just a few hours ago.  I was talking and joking and being my sarcastic self.  She said we had to wait til all my vitals came back to normal and to rest for a bit then I could leave.   At 3:30 am I was finally released.   Phew. . . what an ordeal.  8 hours here at the ER.  My most PAINFUL experience, by far!   I walked out of there with Christine talking and laughing like nothing ever happened.  I felt like normal me.  I still can’t believe I needed 6 pain killers (big ones) and here I am walking out the door as if I was only given tylenol.  It took all of my pain away but it didn’t affect my abilities one bit.   It didn’t make me stupid or high.  We left, went back to her place to get my son and I drove us home.  I had no problems at all.   Amazing!! 

I laid in bed ever so grateful for what amazing friends I have!!  They are the best.   I was physically and mentally exhausted but I couldn’t sleep with all the meds I had taken.  They had me wide awake.  I have a kidney stone.  I thought that bastard was gonna kill me.  How on earth did it cause me so much pain?  That has never happened before.  I have never needed so much medication for those.  Damn you cancer and chemo for putting me through all of this 😠  What are you gonna throw at me next?  Cancer, losing my hair, mouth sores, no energy, shingles, kidney stones aren’t enough?  Stop doing this to me!!   Stop making it so rough. 

I got very little sleep.  When I finally dragged myself out of bed I felt like I got hit by a freight train 😫  but the good news is, I felt so much better from all the pain.   I had minimal pain.  But to stay ahead of it I took 1 pain killer to be safe.  They gave me oxycodone to take at home.    I tried to rest as much as I could and later that afternoon I felt that little asshole make its way to my bladder.  It’s like birthing a baby.  Here comes some pain again and burning.   I’m gonna push you out, you asshole.  The baby (kidney stone) arrived at 6:28 pm, 3 mm long lol.   Ouchie.  I named him Satan for all the pain it had me in through the night/morning.  Once it was out, the pain was instantly gone.  Just like that, pain goes away.  All is good now.   Look at that sucker!!  There are 2.  grrrrrr Crazy how something so small can cause soooooo much pain.   Good riddance to you both!!!!

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Satan

Glad that’s all over with! ! ! !   

I continued with my next round of treatment the following day.   I ended up with a horrible reaction to the adhesive from the tape they used to hold my IV in place.  It looked horrible.  It was itchy and red and looked like I had a disease.  My blood counts didn’t look to great this time around.  My hemoglobin is very low.  If it drops one more point, I am going to need a transfusion to get it back on track.   *sigh*  I don’t want anymore issues.  They said this is why I have been super tired and not getting any sleep.  My sleep medication (trazodone)  isn’t working at all and it’s making me feel like a zombie and I have been getting awful cramps in my calves at night.  They told me to take the Ativan (lorazepam) to help me get some sleep. (those don’t help me, they keep me wide awake).    They also gave me yet another medication (potassium)  to take for the leg cramps.  Geez, soon I’m gonna have my own pharmacy.   

When it was time for treatment, I was telling my oncology nurses about my ER ordeal.  One of them told me that I had been through more shit than most chemo patients.  And it’s like, “what the hell,”  I didn’t ask for this!!  Oh and at this point I have lost 17 pounds.   That’s in 3 months!  Actually, less than that.    I blame that all on the mouth sores I was having.   They haven’t returned and I hope they never do.  I haven’t been at this weight since I had my son.  That was 13 years ago!    I can’t keep my clothes, any of my bottoms, on my hips anymore.  They slide off.   

Well, treatment went well.   8 more to go 💪  I can’t f***ing wait!!!  Soon, I’ll be half way.   A little less than 2 months to go.  I’m getting sooo anxious.  I hate this journey with a passion that my life got put on but damn has it been an eye opener 👀 

Life is way too short.

 

Prayer Monkey

Prayer Monkey 🙂

Steroids have me up.  It’s 2:30 in the morning and I can’t sleep for shit.   So I guess I’ll do some cleaning til I can fall asleep.  The cats are looking at me like I’m out of my mind and the dogs can’t figure out why I’m awake.  haha

June 16 –   Soon I’ll be on the down hill side.  Everyday I get more and more anxious.   The minutes of the hour and hours of the days seem to just tick tock on by.   I can’t stop thinking about getting to the end.  That’s all I ever think about.   Plus I keep thinking about maybe taking myself out of work.  Every week gets harder and harder.  And I haven’t had a good sleep since I started chemo.   It didn’t help any that I had major insomnia before all of this.   I complain about not getting sleep every Thursday that I come in.   The doctor that is taking over today ( cuz mine is out of the country for the month of June) suggested I take 3 pills of the gabapentin at night to help me sleep.   I don’t like taking that many, but I’ll try it.   

Uh oh – I have a mouth sore.   I hope they are not coming back.  Mouth sores are the worst.   It is just one, but it is painful and it’s in a spot that makes swallowing my food difficult.  The heat wave that we’ve been having lately has been dreadful for me.  It is already super hot out but all this medication seems to make my body temperature rise.  Nothing seems to cool me off.   And I started to get hot flashes really bad.    A side effect they told me that I would probably get half way through chemo.  So, there is always something to make me even more miserable than what I already am.  Summer is going to be awful!   On a positive note – I think I’m starting to grow some fuzz on my head 😄

June 22 –  Blood counts are still hanging low but it hasn’t dropped any lower from the last time.  I’m still so tired and the sleep deprivation is really getting to me.   It’s bringing me down and making me feel depressed.  Some days it feels like I can’t function.  I.NEED.SLEEP!!  I told this to the medical assistant and to the doctor AGAIN.  I said at this point, I need a tranquilizer.  I don’t care if it puts me out for 3 days.   I need something to help me sleep.   The extra gabapentin that he suggested I take the week before made my heart racey, so I decided against that.  The doctor was going to look into giving me some ambien.   I don’t care as long as it helps me to get some sleep.  Going through chemo and trying to work but not getting any sleep is not going very well.   I am always so very tired.  I get treatment, get a prescription for ambien and I am on my way.   I hope it works.   

*sigh*   I got another mouth sore and the other one has not gone away.   Now I have 1 on each side of my mouth  😖  I think my eyebrows started to thin out 😦    this is very upsetting.  

June 29 –  Hasta la vista baby.  Kicked # 6 in the butt.   Only 6 more left!!!   Yay 😃  Now I can honestly say I’m on the other side of that mountain I’ve been climbing.   I can finally see a very tiny hole of brightness at the end of the tunnel.  

The other side of the hill

That’s me!!!   Driving to the other side of the hill with my foot on the gas pedal!!!   With the smoke coming out from the back.   Almost there!!!   Thank God!   

 

They told me I was going to get more and more fatigued.  The accumulation of the chemo will start to wear me down even more.  Fatigue is awful.    It is way different from being tired.   I would rather be tired than fatigued.  The hot flashes are getting worse and worse and they seem to happen more in the middle of the night.  The tips of my fingers and my feet started to get tingly.  They said this would happen, it’s neuropathy, another side effect.    My fingers bother me very much at work.   The ambien seems to be working some. 

 July is here!!!!   Do you know what that means?   I only have one month of chemo left!!!!   YAY!!!!  Such a weight has been lifted off my shoulders.    It really changed how I’ve been feeling.   It gave me like more will power, like a boost.   Just knowing that I’m almost there.  A few short weeks away.  That crazy anxiousness is gone.   I mean, I’m still anxious but not that out of control one where it seems like I was counting the minutes.   I seem more calm.  At ease.   It’s been rough.  I’m so ready to get to the end.  

July 4 –  I had to leave work early today.   On my last hour I got sooo dizzy I thought I was gonna pass out.  The standing is getting really hard for me and the hot flashes don’t help.  I just need to rest.  I really need to take myself out of work.    I’m making it harder on myself.   I think July 31 will be my last day if I can make it til then.  I’m so fatigued.   The tingling on the tips of my fingers is traveling through my whole fingers now and my feet feel they have ants crawling on them.   I got home and rested a bit before my brother and his family came over to have a small BBQ.  This will be the first year in 10 years that we don’t throw our annual kickass 4th party.   I just couldn’t.   I didn’t have the energy or the want to host a party or have tons of people over.   Everyone looks forward to our 4th party.   It just wasn’t gonna happen this time.  It’s gets me tired just thinking about it. 

July 6 – Round 8 over and done with.   4 more to go!!!  And I have really great news!  Doctor can’t feel the lump anymore!!!!   Yesssssss!!!!   I’m gonna cry.    Chemo is definitely doing it’s job.  The news gave me like renewed energy and strength.  The final lap.  It should be all gone by the time I’m done with chemo.  and guess what???   OMG. .  I have peach fuzz all over my head.  It is very thin but it is coming out.  Eeeek, I can’t wait to have my hair back.  My eyebrows are getting thinner 😦   

 

The nueropathy is getting worse.  They lowered my dose of chemo for this round (9).  This can cause irreversible nerve damage if it gets too bad.   I don’t want to have to do an extra round of chemo.  I want to stay on track with it.   My fingers hurt a bunch now and my feet feel like they are swollen and of course tingly all the time.   The mouth sores are still there and not going away.  At least I haven’t lost any more weight. 

 

July 15 –   When you’re having a good day, you have to take it and run with it.   Today I was feeling pretty good so I took my son on a movie date.    Wonder Woman!!  Time to see some girl power!!  She’s hot!  yes, I said that. 

wonder_woman_main

 

 Ever since we got back from the movie yesterday, Dominic has been in a weird mood.  It like came out of no where and I don’t like it.   When I ask him what’s wrong, he just shrugs his shoulders and says, ‘nothing’.  Something is not right.  I can feel it.  It’s a Mama instinct.   There are times where it seems like he doesn’t want to be around me.   I sit with him, he goes outside.   I go outside, he comes inside.  He’s avoiding me.  He barely sits with me to have dinner.    He gets bugged with me every time I ask what’s wrong.  It gave me a very uneasy feeling.   It was upsetting for me.  It brought me way down and made me cry.   He’s struggling with something.  

The next day –  He is still feeling the same.   He’s in such a funk.   He doesn’t want to talk or be around me.    He is so down.    Me – “is everything okay?”    Him – “yeah”        Me –   “are you sure?”    Him – “yeah”   his answers are very short.     Me – “you would tell me if something was bothering you, right?”   Him (shrugs shoulders)  Me – “you can tell me whatever it is”,   Him –  he leaves table to go outside.   I started to worry so much about his mood and this funk he was in that I put ALL of my medications away and out of sight.   It scared me.   Something was bothering him, really bad.   I don’t ever think he would get into my pills, but to be safe, I put them away.   This is how worried it got me.    Something was just not right.   My heart was very unsettled with the way he was acting.   I told him, “I know you’re getting irritated with me asking if you’re okay every little while, but that just means that I love you and that I care if something is bothering you.”   I think he’s overwhelmed   😦       He watches me everyday and what I have to go through.   This whole summer he has watched me spend all of my time in bed or in agony with something.  He would peek into my room to check up on me and ask if “I’m okay?”   That has been our life.  I am ALWAYS in my room.   It’s getting to him, I’m sure.  When I come home from work,  he listens to me talk about how tired I am.   Complaining about being tired,  not having energy,  trying to take time off of work being stressed.   All of it.   He sees how hard I’m trying and how tired it all gets me, especially with all the surprises that pop up, (shingles, kidney stones).    He doesn’t have an outlet for everything we’re going through.   He doesn’t have that other parent for support.  We are dealing with ALL  of this together.   He has to be scared, I know he is.  This is too much for him.  He’s used to me being full of energy and doing things all the time.   Now we don’t.   He needs to spend some time away from me.   My brother invited him camping.   He needs this.  He needs a break.   I told myself, I would stop talking about this to him.   But I share it all.   I don’t keep anything from him even if it is bad.   I wouldn’t talk about treatment or anything from this topic anymore.   I would let him breathe.   I need to stop staying in my room no matter how tired I may feel.  I need to get myself out there with him more and more.   We’re both overwhelmed and that too, is accumulative.  I believe he was depressed.    His funk and my worry lasted for 4 days straight.   Always remember,  I love you!!!

 

I’ve been so stressed with work, home and things financially.   My heart is set on taking myself out of work at the end of the month.  By this time I should have put in enough hours and a year will have passed since my last leave.   So I hope it all works out. I need time off.  I need to let my mind, body and soul rest.   I need time with my son.   No work, concentrate on me.  Get healthy again.  Stop wearing myself out with work.    I let my store director know what my plans were.  July 31, I can’t wait.  I will take myself out of work.  I refuse to put myself through this misery for surgery and radiation, not gonna do it, not gonna work through that.   Can I do it financially?  Not really,  it’ll be very hard,  but for ME and my son, I need this. WE need this. 

 I haven’t had any more issues health wise.  I’m hoping my kidney stone was the last of the horrible surprises.  The fatigue is definitely accumulating.  That’s why I’m looking sooooo forward to time off of work.  The mouth sores still make it difficult to eat and swallow.  The summer heat makes me feel like I’m overheating.  At least the pool feels wonderful.  It washes away all my worries when I get in.   Water therapy is the best.  All of my shingles and the pain have gone away.  But looks like I will have awful scarring.    The area is still painful to the touch and my back seems to bother me more often these days.  

 

I know everyday will get better.  One day at a time.   I keep telling myself that.  2 1/2 more weeks for my leave from work and 3 weeks til my last chemo.   I’m sooo drained and worn out.  My body and mind can’t take anymore.   I talk with MaryBeth about my time off from work.  About all of my hours that I needed and how long I can be out.  Oh how I can’t wait.  I really need this time.   This time to focus on me and my son.  Time to heal, breathe and to get back to 100%.  My time off will be right around the same time as my last chemo.   I timed it just right.  Now that I finally made the decision, I can’t believe how much I’m looking forward to it.    Now to just get through these next 3 weeks.  I’ll be home free.  Treatment will be over and I can just relax without having to worry about going to work.  I can spend some time with Dominic before he goes back to school.  That will give me 2 good solid weeks with him.   At least I’ll get to do that.  I’m almost there!!  I can do it.   I see light at the end of the tunnel.  Time off is right around the corner.  Maybe I’ll take a few months.  Who knows.   It’s slowly falling into place.  I.JUST.CANT.WAIT!!!    YAY!!!!

 

 

What do you mean I can’t take leave from work? ? . . . . .😫😭

 

 

 

The good Fight! (The good, the bad and the HORRIBLE!!)

The beginning of my low point

May 2 –

Training class – Woke up feeling so fatigued and without energy.  Heavy breathing during these times has become a new normal.  Having to sit down, take a break and rest while getting ready seems unheard of but I still went to work.   I was sooo tired that I didn’t feel like being the instructor today.  It wasn’t even 10:30  and I wanted to put my head down and fall asleep.   I got so fatigued and my eyes super heavy that I swear I lost consciousness for a moment.  I was talking about rewards cards and the policies that go along with it and suddenly I was talking about something else not even related to training.  In between that, is where I lost myself for a moment.   It scared the hell out of me.  What if that happens when I’m driving?  I could cause an accident.   It jolted me out of my fatigue for a while but it only got worse as the day went on.   When I left I was totally drained.  

My nephew came over later that evening and wanted to have a movie night.  I was so tired but I figured, all you do is sit or lie down, so why not.  Turns out I was too drained and wasted to even watch a movie.  Have you ever heard of that?   I finally had to just go to my room, but my body felt like it weighed 500 lbs and moving from the living room to my room took it straight out of me.   Walking there left me breathless and with a racy heart.

 I didn’t work the rest of the week.   I planned for a hard low point.   Its such a good thing I did it that way.   This last heavy round had me lethargic and miserable as hell.   All I did was lie in bed.  That’s all I was able to do and it left my body in pain.   From sun up to sun down, I laid in bed, getting up here and there.   Its horrible when you don’t even have the energy to eat and you’re soooo tired you can’t sleep.   The steroids that they give me keep me wide awake and make it impossible to sleep.   So, being fatigued and not sleeping is a HORRIBLE combination.  A couple of times, Dominic needed to go to a friends house to work on a school project, driving him there during my low point took ALL THE EFFORT IN THE WORLD!!!  And practically left me gasping for air and a need to pass out.  Crawling in bed became a normal routine.    I was running on pure fumes.    

Like before,  sores have invaded my mouth and these were the worst they have been!!!   I have them on my gums, my inner cheeks and the roof of my mouth.   Just having something to drink is painful and trying to swallow is the worst.  They prescribed me a ‘magic mouthwash’ serum of lidocaine.   That gave me relief enough to try and eat.   Everyday I lost a little more weight from not being able to eat.

 Friday – this is when I usually start to feel better and thinking that I was feeling better, I took a shower.   Holy cow I thought I was gonna pass out from a lack of energy and had to get out.   I barely had enough energy to get a towel, get out and take maybe 6 steps to my bed.  I didn’t think I was gonna make it.    I fell on my bed with such a heaviness.    My heart was pounding heavily from the exertion it took just to get there and my breathing was uncontrollable.   I couldn’t move from my bed.   I didn’t think my heart was ever gonna slow down.   I stayed there the rest of the day.    Oh what misery!!!   I was TKO’d from this last heavy round.   I started to feel depressed,  I even started missing my hair.   Something I hadn’t done.   I cried, I was so miserable and there wasn’t a single thing I could do about it.  That’s how it was gonna be.  Saturday came along and I still didn’t feel any better and nope, I didn’t get any sleep.   This had me worried cuz i needed to go back to work tomorrow and I still felt like hell.  

Sunday, May 7th – I just didn’t have the energy but I still showed up to work.  I’ve been having a hard time clocking in/out ( we use our fingerprint ) my hands have gotten like sandpaper and they are extremely dry.   They’ve been peeling nonstop as if I’m shedding skin like a snake.    They hurt really bad, not even lotion helps them.

  I was feeling so worn out that I needed to lean on my check stand just to help me stand up.  My breathing was heavy and as the day went on, it just got worse.   I can’t believe I’m not better by now.   This is going on almost a week of feeling like shit.    I went on break and went to Penny’s office, she and Clara Sue were in there and I just broke down and cried from exhaustion.   I couldn’t believe how awful I felt.   I had a meltdown.   Clara Sue sent me home and I left.   I got home and lied to my son.   He’s been super worried about me.   He was worried I was home early cuz I wasn’t feeling well.   That was the truth,  yes,  but to keep him from worrying more, I told him that the power had gone out at the store and that all we were doing was standing around, so I came home.   The story about the power going out was true, that did happen earlier at the store.  But I didn’t want him to know I was feeling like shit.  I went to my room to rest.  I was completely and totally zapped out.   My low point had me at my lowest and I didn’t think I was gonna make it.  If this is what hell is like than I’ve been there all week.   Misery and feeling lethargic aren’t even the words to describe how chemo makes you feel.  I don’t know if there are ANY words to describe it.   THIS week was the ABSOLUTE worst I had EVER felt in my life!!!!!!  😭

I just want my energy back.   I just wanna be me again.   Is that really too much to ask for??  

My babies: Reggie & Riley – Watching over me

 

 As shitty as it has been, slowly my low point disappeared and I was back to work on Monday.    

 

Thursday, May 11th  – Switching over to Taxol  

http://www.breastcancer.org/treatment/druglist/taxol

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Today I begin the other chemo,   Paclitaxel (taxol) 131.2 mg.   This isn’t as intense as the other and it’s just 1 chemo, not a double dose.  I’ll do this one every week for the next 12 weeks.  July 27th is my goal.   It’s still gonna be on Thursdays so that I have the rest of the week to recover.   Since this is a weekly one, I hope it doesn’t knock me on my ass like the A/C did.   I don’t have that week in between to feel better.   I’m gonna get hit with this one weekly.   Like the others, this one came out in that same horrific packaging  😟    We start with premeds.   They’ve changed as well.   They’ll be different since this is a different chemo.  So we start with – benadryl,  pepcid and that awful steroid, dexamethazone.   People get horrible allergic reactions to this chemo and they need to keep a close eye on me.   Just in case, I’m given a call button.   Premeds are given, that took maybe 30 minutes.  Now time to switch.    Taxol is hooked up and that will take an hour.   Good Lord the benadryl made me very tired, I’m so sleepy  😴   Wonder why benadryl doesn’t work like that for me at home when I’m trying to get some sleep?  hmmmm. . .  When I take benadryl to try and sleep,  I don’t just count sheep, I count all of Noah’s Ark.   Funny how that is!!     The nurses explained to me that I need to be careful with Neuropathy.  It is a common side effect with Taxol.    It can cause irreversible nerve damage.  Symptoms include – pain, a pins n needles sensation,  numbness and weakness.  Can be burning and tingling or sharp in the hands and feet.  It can cause over sensitivity, reduced sensation of touch, or sensitivity to pain.  YIKES!!!! 😲   I hope I don’t get that 😧

https://www.google.com/search?q=neuropathy&rlz=1C1GCEA_enUS754US754&oq=neur&aqs=chrome.1.69i57j0l5.7927j0j4&sourceid=chrome&ie=UTF-8

   I no longer have to take those ‘at home’ medications nor do I have to come back the day after to get that booster *neulasta* shot.   I’m so happy because of this.   One of the medications was a steroid and would keep me wide awake.  Soooo, no more of those – YAY!!!!    Maybe I can sleep now. 

 Round 1 of taxol – complete!!    (so far, that is 5 rounds altogether)

 Friday – Wow, my hands really hurt.  They’re suffering a bunch.  They burn.  They look awful and even look discolored and they are peeling horribly.    My eyes are blurry but not as bad.   My mouth sores from my last A/C treatment are almost gone and I haven’t gotten dry mouth yet.   So, I really hope it’s true what they told me about the side effects not being so bad.  But, it’s only 1 day post Taxol, so we’ll see.   Last night I had so much energy I was wide awake with that damn steroid they give me as a premed, I was up til 1:30.   Lying in my bed staring into the dark.   I really need sleep.  

Saturday –   Man alive!!!!  My hands hurt soooooo BAD!!!  They burn like hell.   I can’t tell if the water is too hot when I wash my hands and it hurts to even do that.   It feels like I dipped my hands in acid.  I’ve never had pain like this before, ever, especially in my hands.   I can’t turn the door knobs, button my shorts or grab anything!!  😱  THEY.HURT.SO.BAD!!!!!!!  It has to be a chemical reaction to the new chemo.   I’ve lathered them with lotion and vaseline, doesn’t help.  Just vaseline with gloves on to seal in moisture, doesn’t help.    I put a healing ointment on them with the gloves,  nothing.  I got so desperate for relief, I dug out my Dads’ burn cream and lathered my hands in that,  Nada!!  NOTHING HELPED!    They hurt and burn terribly.  I can’t live with this kind of pain, it’s unreal.  I’ve never even heard of this kind of pain.  I can’t do this weekly, my hands hurting like this.  OWWWWWWWW  😭  

The next day at work I had the hardest time grabbing items to scan or typing codes on the keyboard.   The pain in my hands was still there and had only subsided a bit.   I feel worn out and tired today for the fact that I’m not sleeping and the pain kept me awake.   Since I had such a bad Sunday last week I had my lead supervisor only schedule me a 5 hour shift.    Thank God, by the time I left, I felt wiped out.   Also I had back pain isolated to one area.  I feel like I’m falling apart.   It seems to always be something.   I walked out with Penny and all I did was complain about how I felt, I felt so tired.   I told her about my back pain and she said to go home and just rest.   I think Sunday is my new low day.  I left, got home and stayed in bed the rest of the day.  Penny sent me this to lift my spirits.

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 Monday – 5/16 –  I didn’t have anyone in class so I went to my store and worked a few hours.   Learned the new system at self check out.  My hands feel so much better and so do I.  Just a bit tired.   But my back hurts on one side, in one spot, I feel like a small bump.  When I got home I checked it out.   I could see what looked to be like a small rash, like a bug bite.    I went to the other room and asked Dominic what it looked like.  He said, “yeah Mom,  it’s a bug bite”.  Damn bug, it hurts.  Okay,   I didn’t worry too much about it.  

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Wonder what bit me?   It’s painful when I touch it and it’s making my back hurt in just that area.  

The next day – ouchie, the rash from my bug bite spread.  And it hurts, it’s giving me more pain.   I was explaining what it looked like to one of my Aunties and she thinks its shingles.   Nah, it looks like a bug bite.   But I wonder??  

Wednesday – Okay something is not right.   This rash really hurts!!  And it looks horrible!  I’m having a really hard time with this pain and I’m at work.  I’m starting to wonder if my Auntie isn’t right.   MaryBeth says it’s shingles and so does one of my other managers.  I need to call the cancer center and find out.  

 

I call and explain that I’m in horrible pain.  The nurse and I go back n fourth with phone calls to figure out whats wrong with me.  I’m urged to go to urgent care to rule out shingles.  If they are shingles I won’t be allowed to come in for treatment tomorrow cuz I am extremely contagious and everyone at cancer center is at such a high risk for infection  😢

 At urgent care ( in an extreme amount of pain ) –  Yes, you have shingles!  😩  The doctor who saw me was an asshole and wasted my time.   Instead of being a professional doctor and prescribe me something, he offered me 3 different kinds of pain killers and asked which ones I would like?    What doctor does that?  If I was a druggie, this would have put me on cloud 9.   He actually wanted me to choose between the 3!!!   2 of them I had never heard of,  I was in so much pain I settled for the Tylenol w/codeine.   He gave me the scrip and I left, It was almost 9 and the pharmacy closes at the time.   I was still in disbelief, going to the pharmacy,  that he had me choose a medication.   Stupid fool!!   😡  Very unprofessional!!!!   I should have reported him, but I didn’t.   I went on with my misery.   Got my medication, went home and slammed a pill.   I needed relief so bad.  Did it work?   Nope. . . the pain kept me up ALL.NIGHT.LONG.   Even with taking it every so often, I felt no relief.  The pain was off the richter scale!!  Either the meds aren’t working or the pain is just THAT bad.  

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http://www.medicinenet.com/shingles_herpes_zoster/article.htm

Thursday morning – 5/18 –  OMGoodness!!  I can’t take this anymore.   I call cancer center and tell the nurse that the pain is just too much.  It’s the worst pain I’ve ever felt.  She lets my oncologist know and he calls me back.   We talk about my shingles and the pain and he tells me it can get really bad.   It’s nerve pain.  He prescribes me gabapentin, morphin and an anti-viral, Valacyclovir (Valtrex) 💊💊💊   I was shocked at the morphin.   Holy cow!!   I must be in pain.   Yes! I was!  Plus, I’m EXTREMELY contagious right now!!  I asked my younger brother Ray to take me to get prescriptions cuz I was in too much pain to drive and since morphin is a controlled substance they weren’t able to fax it in, I had to go pick it up.   I cried in the car to the hospital and to the pharmacy I was in so much pain.   I think my brother freaked out.   Got to the pharmacy and couldn’t wait for them to fill it.   The pharmacist couldn’t believe I was there again for more medications.  I asked her if she could just give me an epidural.   At least that one would give me instant relief.   WE get my meds and he takes me back home.  I can barely even walk with this pain.  Get home and slam all 3 pills, crawl in bed and wait for relief.  Morphin I need to take every 4 hours, gabapentin 3 times a day and Valtrex once a day.  Oh how I need relief!  This misery just goes on and on and on.   If its not weakness, fatigue, mouth sores or painful hands, it’s shingles.   And with every one, the pain gets more and more intense.  

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Reggie can sense I’m not doing well.  He is always near by to keep an eye on me.   He lays with me.   That’s his spot, near my face.   We rest together and he even kisses my face.  He’s been by my side ALL day!   When he meows, it’s like he’s asking me, “do you feel okay?”    I just love him.      Hopefully this horrible pain will go away, I hope these meds do their job.

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Reggie – Isn’t my baby just gorgeous?!

 

 Shingles are gross.  Open blisters on your skin with nerve pain from hell.   It’s hard to sit back on a chair without them hurting or lying on your back.   I wasn’t allowed to do my treatment today because of them.   So my date that I already had marked on my calendar (July 27th)  is no more.   It got pushed back to Aug 3.    I can’t get treatment til they pop and scab over.  When that happens then I can continue.   Damn you shingles!!!    I don’t wanna prolong this journey.   I don’t wanna be in pain and misery anymore!!  I just wanna be done!  😭   

Finally relief!!!    The next day I woke up to some relief.  Pain meds worked like a champ! I had a hell of time trying to get some sleep but at least I was able to keep my meds on schedule.   That morphin was the bomb and did what it was supposed to.   I’m tired as hell and worn out from all the pain I had yesterday but at least it’s gone.   Slowly they are trying to scab over and boy do they look nasty!!  I can’t do anything to speed up the process.  They have to run their course til it’s out of my system.  It can take up to 3 weeks.  In the meantime, I have all the nerve pain to deal with.  Thank God they gave me painkillers.   3 weeks is a long time to be in pain.   I say this all the time,   “I can’t wait til it’s over!  Man, I can’t wait!”

  A couple of days later.   Yuck!!  Nasty!!   It looks like I have a disease.    wouldn’t wanna be around me.   Gross!!!  *gag*   These little assholes are painful f**kers!    I hope you never have to experience them.  

 

May 24 – Treatment continues and I have to see the doctor.    He’s going to examine me,  see how I’m responding to chemo and check my shingles.  I hate the fact that I had to skip a week.  This should be my 3rd round of Taxol, instead, it’s my 2nd.   During the time of my shingle episode, my mouth sores went away.    Yay!!  I’m so happy for this!  It’s so hard to eat when you have horrible sores in your mouth.   My eyes haven’t been so bad but the dry mouth is still there.   He does his examination.   It doesn’t hurt at all like before, all the pain is gone.  He mentioned that it (lump) was harder to find and it felt like it was almost gone!!!!   *GULP*   almost gone?????    Did I hear him right??? Deep breath Sue, deep breath.    OMG  This is GREAT news!!!!  He said I was responding very well and the chemo was doing its job.   That’s just after 5 rounds!  I am a happy girl  😄 I needed this news.    I have been having some really hard days.    It brings you down to the point you feel depressed.   Today was a good day.   I will still need surgery.    Just as long as it continues to zap it out, I will fight to get to the end.     I’m off to do my treatment with my big girl panties on and my boxing gloves.   Eff you cancer.   I’m gonna beat your ass!!!!  

 The doctor asked if I was still working and I told him ‘yes’.  He said I was a very strong woman.   

 

 Oh the fatigue is back!   And it feels like its getting worse.    There are just some days where it feels like I’m at the bottom of a big black hole with no way to get out.   All I do is rest, even though I need it.   I can’t sleep at night at all and it’s wearing me down.   The doctor said it was gonna get harder and harder for me to work.   And trying to decide WHAT to do about work is weighing on me heavily.   Financially, I need to work.   Physically,   I need to be out, like now.   My Aunt wants me to go out on disability through social security but I don’t qualify.   I tried applying for food assistance, twice, but they denied me.   Even with the doctor bills starting to flood in.  I’m soooo stressed out.   And always so tired.    I can’t go out on FMLA cuz so much time needs to pass from the last time a person was on FMLA.  I was on it when I was out with my ankle and that’s only been a few months.  So, I have to wait til July so it can reset.    I just want all of this to pass.  I just wanna be me again.   I wanna feel good and not so tired all the time.   My son is now out of school and I can’t plan anything because of treatment and even if I did, I would probably be too tired.    All of this, EVERYTHING, suck ass.  The side effects, the fatigue, the pain.  JUST.SUCK.ASS.  I know I’ll get through it and it’ll pass.   But right now things are so dark and stormy, I can’t wait for a sunny day.  

June – The shingles are slowly healing.   They have scabbed over.  I still have nerve pain and I could have that for a while.   6/2 another round out of the way.  

 We’re having a work BBQ and Sarah, my oncology nurse is gonna be my date.  I just love her!!!  She takes the best care of me during treatment.  but she likes to pump my veins with toxins 😜  She does have heart of gold.  

Every now and then, there are some good days.  When those days come, you have to grab them and run with them.    They are few and far between, at least with me they are.   When the sun is shining and the birds are singing, you know you’re having a good day.  There isn’t always pain, but the tiredness is always there.  My eyes have been opened wide.   To how fragile life can be.  Every day that goes by I have a greater appreciation for life than I did before.  My life right now sucks balls, but guess what, I still love my life.  I thank God for my life everyday.    Aug 3 is 2 months away and I know I can get there.  Feb 13th  is getting farther and farther away from me.  That was 4 months ago I got my bad news.   Did I think I would get to this day 4 months later. . . nope.   I remember when I couldn’t think of anything else but breast cancer.   It was on my mind 24/7.  The fear, the obsession for information.   Now I don’t think about it so much, it’s not on my mind like before.   Now, I think about chemo, the side effects and not being able to sleep.  I think about how I’m gonna feel everyday that I wake up.    I guess thats mental progress.   My body is slowly getting used to this new treatment.   Now if the shingles can just go ALL the way away,  I would be a happier woman.    I still get pain in my back, the nerve pain.  The scabs are taking forever to fall off and its still painful to the touch.   Oh and I need sleep, lots and lots of sleep.    I would feel so much better if I was able to get sleep so my body can rest up.   It’s so worn down but I refuse to give up.   Gonna take it to the end.   I CAN DO THIS!!!! 🙏 💪 👊

 

 

I’m having the worst pain flare up of my life. . . . . . . . 😭😭😭

 

 

 

 

 

 

 

 

 

The highs and lows of A/C

April 2

Today is a day I thought I was prepared for but nope. . . I sure wasn’t!!!

Surprisingly, I felt very good today.   Didn’t feel tired or nauseous.   Didn’t feel any of that weakness or drained out feeling, just had knots in my stomach.    Since I had no choice but to chop off my hair last night, today would be the day I would go to work with a new haircut and color ( my wig ).   Let’s see how that goes.  I can tell you right now, I don’t feel comfortable at all!  

Got to work, nothing was out of the ordinary.   It has been FOREVER since I have done anything different to my hair, so naturally, EVERYONE noticed the new ‘change’.   To make me feel more at ease around my co workers since they were talking about the ‘cut and new highlights’,  Penny blurted out, “you finally went and did your hair!!”   I was glad for this because I felt sooo uncomfortable 😢 and just didn’t feel like me.  It seemed like I stuck out like a sore thumb.  It probably would have been easier to tell everyone that I lost my hair to chemo but to keep my life at work as normal and low key as possible I decided to play the charade of having a new haircut.   Penny said I looked great!!  Here is a pic she took of us.  

Penny and I

 

I got a ton of compliments and even got asked out on a date, haha, but I just wasn’t comfortable and since I was new to wearing a wig it felt like it was gonna slide right off of my head.   It didn’t help matters any when one of my coworkers said it looked like a wig.   Oh the stress of the day had me worn out.   In time, I’ll get used to the new me and I’m sure I’ll be flipping my new hair in no time.  But today was horrible even though the picture says otherwise.   I need to be able to feel like me and I just didn’t.  My day felt like it was never gonna end and I couldn’t wait to leave work.   I went home and cried my eyeballs out.   I was so overwhelmed and I still have months of this ahead of me.  Penny always knows just what I need to make me feel better.   So, she sent me this. . . 

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This too shall pass and tomorrow is a new day!

 

Its almost mid week, this is when my low point hit me the last time.    Tuesday, I have training classes and they’re upstairs.   Geez, never thought it would be so hard to climb stairs!   I think my no energy level is starting to kick in.  I felt like I was floating, but in a bad way, was not a good feeling.  I left work exhausted!  

 Wednesday –  man, I just do not have energy and I have to go to work.  I didn’t sleep well at all and my scalp has been hurting, it is so dry and tender.   I don’t have the luxury of having the week off like I did the last time I felt this way.  As if on cue,  the mouth sores, dry mouth and blurry eyes are all back.  and once again, the food tastes nasty.     This is gonna be rough.   Getting ready,  I really have the shakes and can’t even get my makeup on.   I needed to sit down and rest.  Finished getting ready and managed to drive myself to work,   geez, what was I thinking?   I’m never gonna make it through today.  I’m already so tired and my day hasn’t even begun.   I can barely even stand.   Please get me through the day.    

Don’t know how I did it, but I barely made it through my 8 hour shift.    Walking out to the car, I cried from being so very tired.   I can’t believe I still need to drive myself home. I just don’t have the energy, also there is a part of me that is very stressed out.   Tomorrow I get results from the genetic test I took to see if I’m a carrier of the cancer gene.   My mind and my soul just hasn’t been able to catch a break.   I had to have a meltdown when I got home.   and all I did was lie in bed the rest of the afternoon.   It felt like I couldn’t move.  My head (scalp) has really been hurting.  I’ve come to the conclusion that the very little hair that I have left is just dead hair.   Dead hair attached to my scalp and it feels like wire, like a brillo pad.   I think this is a big part of why I can’t sleep.  It hurts to lie my head anywhere, the sofa, a pillow, it just hurts 😦    I honestly can’t wait to shave it all off.    Never thought I would ever catch myself saying that.  I’ve already lost the majority of my hair due to my hair follicles dying out because of chemo, whatever is left is just dead, stiff hair.  

Thursday – I feel even worse!   This is worse than the last time!   They did tell me that with each round, the tiredness and weakness would be accumulative.   Man, they weren’t kidding.   There is no way I can make it through an 8 hour day at work.   Thank God, MaryBeth offered to do half of my shift.    I told Ted I wasn’t feeling well.   (Ted is my lead supervisor and he has no idea what’s happening with me)  There are only 4 people at my work who know what’s going on.   I left with relief and went home and crawled into bed til it was time to go meet with Karen to get my test results.    I’m still so stressed about that.  

RESULTS!!!!   Sitting in her office had my heart going 100 mph.   I’m so on edge.   Results are negative!!  I’m so relieved, I burst into to tears.   I am not a carrier of the gene  🙏   woo hoo!!   I cried in her office, cried all the way home and cried more at home.   I needed this relief.  I needed some good news.   Now, to get through this low point.  

Friday,  just like before, my energy came right back up and I was back to being me.   MaryBeth and I had made plans to shave the rest of my head.   So, I met up with her to take care of that.  I thought I was gonna cry and be hurt that the rest of my hair would be gone and now I would truly be bald, but to be honest, it was such a fricken’ relief when it all came off.  I didn’t realize how much it was hurting my head til it was gone. It even hurt as it was getting shaved..    I was already getting sores on my scalp from the dead hair.   So a bit of advise to anyone going thru this. . . . don’t be dumb and wait like I did to cut your hair or shave it.   Do, it right away with the 1st rounds of chemo.   I  put myself thru pain and misery trying to hold on to my hair.   No matter what, I was gonna lose it and I did.   Now, I can actually put my head on a pillow without it hurting me.

I do have some good news!!!!  That constant pain that I was having in my right breast where the lump is at is now gone! Yes,  gone.    I’m gonna take that as a good sign that the treatment is working.   I have had pain in that right breast since like last September and now it is gone!!!!!! Can it be true?!?!   I sure hope so.  

 Round 3 – As much as it doesn’t seem like it, it’s really going fast.   I can’t believe I’m on round 3 already.  All hooked up and getting infused.   Some of the mouth sores have traveled to my lips but no matter how hard I try there is just nothing I can do about that.  They come with every cycle  😩   Here are a couple of pics while I’m getting chemo.  

 

Grapes and I do this together.    I get hooked up on the upper part of my chest.   You can see it a bit over the rim of my shirt.   One more of this intense cycle and I move on to the lighter chemo.   Even though there are points where it seems like I don’t even have the energy to crawl, I have to admit I’m fighting this like a boss.   Yes, it brings me to low as hell points but I refuse to let it take me down.  Not gonna happen.   I have one more devil infusion to go.   I was told that when I switch to the other chemo my mouth sores should go away ( I really hope so)  It makes it very difficult to eat and because of that I have already dropped 10 pounds.  That’s in 1 month.   and that big dip of little to no energy should go away.    I really hope that’s true too!!!

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I felt so good a couple of hours after chemo that my son and I decided to go out for dinner.  We met up with Penny and her husband and had a great time!!    I wish I felt this good all the time.    In a few days I’ll feel like hell.   Tonight,   I’m going to enjoy it to the fullest!  And today was the best I have felt with my wig.  I actually felt pretty.  If I wouldn’t have told you, maybe you couldn’t tell that wasn’t my real hair.   Who knows, but yes, that is my wig.  

5 days later – ugh. . . here comes my low point.  Wow, it gets worse and worse with every cycle.   If I thought I didn’t have energy before, I really don’t have any now.   I was struggling with not feeling well at work and Ted started to notice this was happening a lot.  I literally didn’t have the energy to hold my own body up and I was starting to breathe heavy just because of the effort it took.   I told Ted I wasn’t gonna make it through the day and needed someone to cover the rest of my shift.  I almost started crying right then and there because of how horrible I felt and the fact i couldn’t stand.   When I went on break I finally made the decision to tell him, so my store director, Clara Sue and I pulled him into the office and gave him my news.  He needed to understand why I was feeling this way and why I needed to go home.  But at the same time I didn’t want my news to become public throughout the store.  He was speechless and I knew he would be.   But oh how I needed to leave.   It took all the energy I had to walk out the door and get to my car.   Now, I still needed to drive home.   oh gosh,  I really hate this!!    Got home and barely made it into the house to crawl into bed.  I just need to rest.  I’m sooo tired.   My low point lasted to the end of the week.   Its getting worse and lasting longer.   I even felt a little low on Sunday which is very unusual,  I’m usually back to normal by then.    Not this time.  

Round 4 – April 27th –  today I have to visit with the doctor.    He needs to examine me and see how things are coming along.   I hope it’s good news.   He does his examination,  I feel no pain to the touch.    This is very good news for me.   Cuz that lump has been a painful asshole.   He also tells me that he feels it has gotten smaller.  YES!!!!!!   That is VERY good news.   The treatment is doing its job.   Now to keep an eye on it and hope it shrinks all the way.     I’m so happy with this news and also happy that this is my last double chemo.   These 4 rounds have been truly hard.   The doctor has a hard time believing that I’m still working.    When I leave the cancer center I can’t help but feel, I’m done, I’m done, I’m done.    Those 4 big ones are over.   Now to start 12 weeks of the next one.   My battle is not over but it should get a bit easier.   I was told with this chemo,  that my hair could start growing back mid way, in peach fuzz form.   That the mouth sores should go away and my energy be a lot better.   I wanna believe all of that.   The mouth sores have been my biggest gripe and I’ve lost a few more pounds.   I  can only hope it gets better.

 

My low point hit me so hard I didn’t think I was ever gonna recover. . . . .  

 

 

 

 

 

There it goes, but remember. . It’s not just Hair!!

Round 2 – Mar 30th

And so the ride begins.    Round 2 has arrived.   I’m not sure if that went quickly or if it took forever.   It’s very hard to tell with everything that happened in just 2 weeks.   But here I am, gearing up for another dose of the ‘red devil’ and it’s companion Cytoxin. 

As I brushed out my hair this morning, more came out.   Just in lots of strands.  Its Thursday, 2 weeks exactly since the start of chemo and there goes my hair.   I’ve come across a few wigs to wear during the time I won’t have any, but a wig just isn’t me.   I’ll have to get used to it cuz I’m not ready, by no means at all, to rock the bald.   A couple of them look just like my hair, but I feel like I stick out like a sore thumb.   Like if everyone will be able to tell.  I guess we’ll see what happens. 

As always, the nurses at the cancer center are wonderful.   Once again I opted for a window seat to look outside.   This time I had a great view.   The scenery seems to ease my soul.   It’s tranquil.    

 

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I could stare at all nature has to offer all day!!

 

Displaying 20170413_130324.jpg     My Chemo pole 🤢      Displaying 20170413_130406.jpg

My brothers and Clara Sue helped to keep me distracted while Sarah administered the ‘red devil’.   I really do dislike that one.   I mean, I dislike all that is happening to me.   But that adriamycin, I really don’t like.   I can’t help but feel that one is gonna cause me lots of grief.   During my infusion I was very happy when a dove came and perched itself on the wall.   I love doves.  When I see doves I think of peace, the holy spirit.   So it brought a smile to my heart and soul and eased my already troubled mind.    It stayed there for the longest time as if keeping a watchful eye until it flew away when a gardener was taking care of things.  

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The burning sensation from the Cytoxan was there again.  It lasted about the same amount of time then it was gone.   I was prescribed an anxiety medication in case it came back strong like it did the last time.   Just to have on hand and to take when needed.   For the most part, I left feeling good, just a bit tired.    Nothing major.    Sarah once again informed me strongly it was time to cut my hair like really really short since it was starting to fall out.   That way I wouldn’t have to go through the agony of watching it fall out in globs.   I heard what she had to say but did I listen?     Round 2 complete.    YAY!

The following day, I felt like a normal person.   A bit of anxiety when I woke up but it soon went away on its own.   Blurry eyes have slowly returned and my mouth is dry.   Yuck, here we go again.   My mouth is very sensitive and tender and had to switch to a soft tooth brush and have to be careful when brushing.   I went about my day.   Couldn’t sleep for the life of me that night. 

Saturday, April 1st – 

Got up feeling okay.   Blurry eyes and dry mouth are in full force.   Either it’s the chemo or all the premeds including steroids I’m given or just a combination of it all.   All I can say is. . . . I don’t like it at all.   I won’t keep complaining about not being able to see or how awful my food tastes,  I’ll just leave that right here.   Just know that’s how it is.    I spent some time styling 2 of the wigs I had knowing I would be wearing them soon.   I tried to get the cut as close to my own hair as possible.   I guess it’ll be okay.   Still don’t wanna wear a wig but oh well that’s how its gonna be.   Later that day I took a shower, washed my hair. . . . OMGeeeeee!!!!!  *GASP*  My hair came out in GLOBS 😭  literal globs.  I couldn’t believe it!   It was non stop every time I ran my fingers through my hair. It came out so much that it bunched up and just tangled in a huge knot.   I couldn’t put my fingers through anymore.   I did my best to wash that tangled glob at the end of my head.   Oh why oh why didn’t I listen to Sarah?!   Now I understand when she said to cut it short.   I wouldn’t have to go through this!   It broke my heart, there goes my long hair.    No people, it is not just hair when it comes to chemo.   People say that all the time, ” it’s only hair, it’ll grow back”.   Well, yes it will.  But when you lose it and it’s not your choice to, no, it is not just hair.   It is a part of you, how you present yourself to other people, like the clothing we choose to wear.    So, if you know someone who is going through chemo, please don’t ever tell them it is just hair and it’ll grow back.   Have some compassion and know this wasn’t something they wanted to happen.   Trust me. 

As much as I didn’t want to but needed to, I had no choice.    I gathered that glob of tangled hair, got a pair of scissors and with my heart in my throat put it ponytail like,  took a deep breath and chopped it off.   I didn’t make my new haircut look pretty, it was all gonna fall out anyway.   But it was super short, like boy short and there was my hair.   I was holding it in my hands, all of my hair except for the little bit that stayed on my head.   It took 2 weeks and 2 days for this to happen.   Chemo wastes no time.   I felt like a whole different person even though in my heart I was still the same.    A sadness took over,  I needed to get used to the new me.  But its happening so fast I don’t even know where to start.  

 

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My hair went from this ( strands ). . . . .

 

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. . . to this ( a glob), in a matter of 3 days 😥

Oh the emotional distress your heart and soul go through is unreal.   And all the new things you are forced to get used to.   It really is hell and as I said before. . . this is only the beginning.    The only thing you can do is soldier forward, keep a great attitude and make the best of your new life.   I walked over to my son in the other room with my glob of chopped off hair in my hands and showed him my new haircut.    He was totally shocked at what I had to show him but he gave me a huge boost to my confidence when he said, “your short hair doesn’t look bad at all, it looks good”.   Oh how I needed to hear that  💖    But after that moment I would no longer show my hair or my head.   

 

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. . and this is what you get.  This is the end result.   Rockin’ my beanie!!   This is the new me.   

 

The turmoil that my heart was in was on overload.    I am doing my very best to cope with how things are going and trying to keep that positive outlook.  But some days you are just not prepared for and today was one of them.  I’ll get used to it, it’s just not gonna be today or tomorrow or the day after that but someday.   For now, I’ll just be in my own private hell till things get better.   Tomorrow I go to work and I don’t even know how I’m gonna handle the day, I’m just not ready.    I’ve told no one but my son.   *sigh*    I guess we shall see.  

 

 

 

So,  slowly into that dark and scary haunted house I go. . . Where it’s pitch black and things jump out at you at any moment that you just weren’t expecting. . . . 

 

 

 

 

 

 

 

 

The 13 days of Chemo

Day 1   (Mar 17th)  –   The day after round 1 of chemo.  I couldn’t sleep a wink.   Anxiety had the best of me.  2:30 in the morning and I was looking for someone to talk to or text. I just didn’t wanna wake anyone up.  I was WIDE awake!!  😲  My heart was racing to nowhere and just wouldn’t slow down.   Is this how it’s gonna be?  I should be exhausted from my day and out like a baby.   Instead, I was tossing and turning and expecting at any moment to feel like shit.    Honestly, I felt the same physically.   Nothing was different, I didn’t feel sick.   Other than anxiety and getting no sleep,  things felt the same.   I was mentally exhausted, for sure!  Ever since Feb 13, this day has been cemented  and burned into my mind and my soul.  I have dreaded it, wished it away, cried about it,  hoped it wasn’t true, yet it still came.   It still came, and guess what, I survived it, I’m still here and I’m still me and round 1 is all over.   Oh, the horror my mind put me through.   The situation is a horror all in itself, but my mind has drug me through the mud.   It doesn’t shut up, even now.  I really did mean it when I said before our minds can be an evil place.   My mind has made the situation MORE of a nightmare and doesn’t let me have peace,  if that is even possible in times like these.   

I got up and went about my day like any other Friday.  It was St. Patty’s, so naturally, I dressed in green.    Looking a bit tired and frazzled.  

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I dropped my son off at the bus stop and had errands to run but my anxiety was off the charts and my mind was going 100 mph.  I text my brothers’ GF to see if I could pick up my niece to take my mind off things and she agreed.   Thank the Lord!!   I needed to be with someone.  I didn’t wanna spend the day alone.  I picked her up and we did my errands together.  My anxiety disappeared.   What a little life saver my niece was.   I had no anxiety the whole time she was with me.  By the time we finished and had lunch, I was completely exhausted, it finally hit me.  Wow, how I needed sleep.  But as long as she was awake, there was no getting any unless she slept and she didn’t.  By the time she left, it was almost time to go in for my Neulasta injection.   I will need to get this injection the day after every A/C infusion.  

https://www.neulasta.com/?WT.srch=1&gclid=Cj0KCQjwwqXMBRCDARIsAD-AQ2j2Lji4clW2r9sge9oYvwTUAeKYZX6qZnRZrwnQDGnJ20EKyJ6aoWAaAtC3EALw_wcB&gclsrc=aw.ds

Neulasta – Bone marrow stimulant.  It helps the body make white blood cells after receiving cancer medications.  It helps to reduce the chance of infection due to a low white blood cell count.  I call this a booster shot. 

This visit wasn’t long at all.   I was in and out in no time.  The injection was given to me in the fat of my belly and I was sent on my way.   Wow, that was simple and no pain at all.  Maybe all of this won’t be so bad.    Wrong!!!    Later that afternoon, I was talking to another one of my Aunties’, my Auntie Diane and while speaking with her I was hit with a horrible anxiety attack that seemed to last forever and I couldn’t breathe.   I think today’s injection and yesterdays chemo and of course everything else, finally got the best of me.   My anxiety hit an all time high.  By the time we ended our conversation my anxiety attack was gone, good thing I had someone to talk to.   sheesh, I don’t like this at all 😢

My mouth is starting to get very dry and my eyes are getting blurry.  I must be very tired.   I would love some sleep, maybe tonight.  Anxiety, please leave me alone.  

Day 2  –  Nope, still no sleep and my anxiety hung around and didn’t leave me alone.  I woke up with my mouth extremely dry and my eyes more blurry.   Geez, this no sleep is making my eyes very yucky.   It’s hard to focus.   Other than that, I still feel like me, normal.   I don’t feel sick, my tummy feels fine.   I did have to take my at home medications. – 2 pills of dexamethazone  and 1 claritin.   The dexamethazone I will need to take for 3 days after chemo and the claritin for 7 days. 

Made myself breakfast.   Gross!!!   It tastes awful!   Not even water tastes the same.   It all has no flavor, like cardboard.   And the dry mouth doesn’t help at all.   Oh no, is this how it’s gonna be?   Not being able to taste my food or drinks?   😭

Tonight my son and I have a dinner date with Clara Sue and her husband.   It’ll be nice to get out and hang out to get my mind off of everything that is going on.   Can’t wait.

On the drive to her house – wow, I’m really having a hard time with my eyes, they are soooo blurry!   What the heck?!  

Dinner time –  I can’t taste my food at all 😞 and the soda is awful!  Water doesn’t even taste good and I LOVE water.   It’s not her fault, I’m sure her dinner was great!  My mouth is unbelievably dry and nothing soothes it or quenches it.  Food feels very pasty and thick.  It must be the chemo or the medication.  I hope it doesn’t last.  I love food. However, I did really enjoy getting out and the company, that was the best part. 

On the way home – OMgoodness!   I almost can’t see at all!!   It’s late and dark and my eyes are deceiving me horribly.    We’re on I-40 going west and I can’t see for shit!!   The blurriness is awful and very dangerous if you’re driving.   Please get us home safe.  

Made it home safely,  thank the Lord!!  I don’t think I’ll ever drive at night again while on chemo.   That was awful!!   Time for 2 more dexamathazone.  Nope, water still tastes yucky.   It’s time for dry mouth rinse.   I found this mouth rinse at my work and boy what a relief.   Too bad it only lasted a while.   Guess I’ll be rinsing my mouth quite often.  Water actually tasted good for a moment.   But it didn’t last long.  But this will give you momentarily relief.   I suggest it.  It is a store brand of biotene, just a lot cheaper, but same effect. 

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Day 3  –  I still didn’t sleep very well but I got up, got ready and went to work.   Yes, I went to work.   Other than feeling a bit tired I felt absolutely normal.   Didn’t even feel sick.  No one at work suspected anything and I didn’t miss a beat.  I was still my happy self.   I won’t let chemo change me, I am still me.   You couldn’t even tell I had just went through an intense round of chemo just a few days earlier.   My work family who know were actually very surprised.  I refuse to let this change my life.   My life will continue to go on as planned.   It just got monkey wrenched but that will be temporary.    Positive attitude Sue, gotta keep that positive attitude.   Work will be good for me and keep me from thinking too much.   I need to engage with my customers and coworkers to keep me sane.   I’m gonna try working as long as I can.  But after today I will be on spring break with my son.   I need this time off to give my mind, body and soul a break.  Things have been non stop since February.  I need a break with my son.  

 My mouth is still extremely dry and my eyes are just horrible.   Guess that’s the new norm 😧  Food just doesn’t taste good  *sigh*    

Day 4  –  Spring break with my son, yay.   Got some errands done and I feel pretty good, just a bit tired.  But nothing too bad.   Eyes are very dry and mouth is horrible.  Hopefully some eye drops will help, cuz I need something.   And food tastes nasty.   When will this go back to normal?    If all goes well and I feel okay, my son and I are taking a day trip to Chimayo, NM with Clara Sue and her husband tomorrow.  I can’t wait to get away.    

Day 5  –  day trip, yay.   Almost a 2 hour drive, wow that tired me out and I wasn’t even driving.   Santuario, my son has never been here and I haven’t be here in over 20 years.  Loved it.   My son enjoying some quiet time next to a small stream.   This warmed my heart.   We so needed to get away from life. 

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We went to a restaurant close by for lunch.    It smelled so good and I was starving.    Yuck!!!   This was the worst my food had tasted!   The dry mouth has taken over horribly!!   My mouth was so dry I couldn’t even break down my food as I was chewing it.  It seemed like I was eating rubber and no matter how much I chewed I just couldn’t break it up.  The soda tasted nasty and so did the water.  But I forced my food down my throat for the fact that I was so hungry and needed to eat.    We left, stopped at a couple of places before making the drive back home and by this time I was totally wiped out.   Holy cow I was exhausted!   I almost couldn’t hold myself on my own 2 feet.  I was drained!!  I hope it was just from the trip.  

Day 6  –  I thought I would get some good sleep cuz of the day I had but nope,   I woke up completely drained and wiped out.   And it wasn’t a normal drained and wiped out either how I used to know it.   This was different.   This was a very different kind of tired.   I laid in bed ALL day.   Something I don’t ever do.   I’m always doing something.   Not this day.   It took effort just to move.   I was told for my chemo session that I would hit a very low point about 6 days after my chemo, well here we are on day 6 and I think it hit me.   I thought maybe I just had too much day yesterday.   This was awful.   I have no energy and I don’t wanna do anything.   I.am.so.tired 😢   Dry mouth and blurry eyes continue.   Eye drops don’t help at all.  

Day 7  –  One whole week after chemo.   OMG  I feel like total shit!!  I don’t feel sick, I feel wiped out like I’ve never known.  The energy just isn’t there and feeling drained is off the charts.  I have the shakes soo bad.   It seems like I have Parkinson’s.   I don’t wanna move from my bed.  I have to go to the cancer center to meet with social worker and I just don’t have the energy and can’t see for shit.   My eyes have gotten to the most blurry they have ever been in my life and the dry mouth is nonstop.   I drive myself to cancer center and don’t know how I walked inside without passing out.  I used up what little energy I had just for that and couldn’t wait to sit down.   We talked and she took my information for some programs she thought would be helpful for me.  I requested to speak to a nurse about my dry mouth and very blurry eyes and my loss of energy.   She told me it was all part of chemo and that’s how it was gonna be.   I need to keep myself on a good diet.  And try to rest as much as I could.   There was nothing I could do about my dry mouth but the mouth rinse and eye drops would not help.   The chemo was killing all of my cells and it kills the fast growing cells first like your hair cells, mouth cells (saliva) and the wetness (natural tears) your eyes produce.  It was something I couldn’t stop and something I was gonna have to get used to.  And my low to no energy was a side effect as well.  This was my low point and another thing I had no control over.  It would pass after a few days *deep sigh*    Please Lord, get me through this.   I couldn’t think of a time I had ever felt this way.   This was worse than having a full blown flu.   I almost felt depressed.  

Day 8  –  I still woke up feeling the same, absolutely drained and without energy.    Making something for breakfast took all the effort in the world so I just settled for a bowl of cereal, which later on upset my stomach to no end.  I think it was the milk.   I have never had issues with milk.    Oh I hate this!!!   On the upside, I think my dry mouth is getting better and I can taste a bit of food.  I hope its getting better.  I never imagined it would be like this.   Good thing I’m not at work this week.   But my poor my son,   I haven’t done anything with him on his spring break 😢

 I have never laid around so much.  I finally had a small bit of energy by afternoon and my son and I had some chicken for lunch.   Surprisingly, this gave me a huge boost to my energy and by the later afternoon all of my energy was back.   I bounced right back after 2 1/2 days of feeling as low as I have ever felt.  I actually ran some errands and so grateful to feel like me again.   It was amazing how that low point came and went.  From Tuesday afternoon to Friday noon,  that’s how long it lasted then it was over.   I was back to me, yay, I’m so happy.  

Day 9  –  I woke up feeling so good that my son and I took a day trip to Ponderosa to visit family that live out there.  I was surprised with the way I felt.   It was almost like the past week didn’t even happen but it did.   The 1 hour drive was a piece of cake and didn’t tire me out at all.   We enjoyed our day out there and my family couldn’t believe how well I looked for just having chemo a week earlier.   I myself couldn’t believe how well I felt but boy was I ever so thankful.   I don’t wanna ever feel like I did again.   The drive home didn’t bother me and the rest of my day was awesome!!  Wasn’t even tired.  

Day 10  –   Well, I woke up with a new side effect 😫  mouth sores.  Ouch, do they hurt.   They are open blisters on my gums.   Man alive!   Whats going on?   I had no idea all of this could happen.   Maybe I brought this on myself.   I was enjoying sunflower seeds yesterday.   Maybe the salt on them wasn’t good for me.   My papers say that mouth sores are very common and can be very painful and get really bad.   Well, looks like they landed right in my mouth.  On the upside, my taste buds have gotten better and I can finally taste my food.   Oh a coke tastes so good.   But the mouth sores make it very hard to eat.   And my blurry eyes finally cleared up.   I can see.   I guess with everything that’s good comes something bad.   What can I do about it but find a way to live with it. 

Day 11  –  Woke up feeling great and went to work.   Worked a whole day without feeling drained or tired.   Life is good.   Still no one suspected anything and I didn’t let on.   My life was normal just like before.   And being at work really took my mind off of things.   My only gripe is that my mouth sores are multiplying and they really hurt and make eating near impossible.    Guess I need to find a new mouth rinse for mouth sores now.  *sigh*  

Day 12  –   Went to work again feeling great.  Mouth sores are still there but my food finally tastes normal again and water and the blurry eyes are all gone 😃  My life almost feels like it did before Feb. 13th.  

Day 13  –  Got up to get ready for work, feeling really good.   Got in the shower, washed my hair and it started falling out 😥  I ran my fingers through my hair and it came out in big strands, not globs, but big strands.   This completely took my breath away.    I knew it was gonna happen but I couldn’t breathe.    No matter how much you prepare for it, you are never fully prepared and you have no idea until it happens how it’s gonna make you feel.  I broke down in tears, in sobs, in the shower, looking at the hair I was losing in my hands.    Every time I ran my fingers through my hair, more came out.   When I combed it out, hair came out.   I was so heart broke.   I don’t want this to happen.   But I can’t stop it.  In a few days I won’t have any at all.   Help me get through this, I’m just not prepared for this to happen.   Yet I’ve known about it, talked about it, told myself I would be ready for it.   Nah ah,  there is no way to be ready for something like this.   It shattered my heart 😭

 

Oh how I want this to be over. . . . but it is only the beginning

 

 

 

 

 

🎵Pump up the Jam🎶. . oh wait. . It’s ‘Pump up the Veins’

March 16th   –   Chemo Day

Well, the day has arrived.   It’s chemo day.  The start of a regimen that will last me 5 months.    It’s a day I have not been looking forward to but a day I cannot get out of if I want to get cured.   I dread chemo sooo much and I have dreaded it since the day they told me I would need it.   But here I am,  my veins will be pumped with toxins that will kill all those nasty bad cancer cells but will also kill all of the good cells at the same time.   Am I gonna feel like me once that happens?   Am I still gonna be my happy little self or am I gonna be wasted and lethargic?    They keep telling me, “everyone is different”,  so they can’t tell me how this will effect me.   They can only give me a general idea.   Okay, i guess we’ll find out.   So,  into that black tunnel of unknown I go.  

I am met with a nurse and was taken to the back.   I have my posse with me to make it all better.   I have Clara Sue,  and both of my brothers, Jake & Ray.   Let me tell you, having them all there made such a difference.   Cuz to be honest, my feelings were all over the place.  I had no idea what to expect and my mind was just going back n fourth.   We did all the standard procedures –  weigh in, etc.   I am taken to the infusion center,  interestingly, it is set up quite nicely.   I was put all the way back in the corner, which at first, to my dismay, didn’t wanna be there.  Hate being in the corner.   But after a while, I actually liked it quite a bit.   I was put by a window where i could see outside to their back courtyard/garden/patio which is very pretty and found it to be somewhat peaceful.    It has different colored flowers and trees and the birds come to visit.   I loved it there.  I decided this is where I always wanna be, at a window seat to look outside.   The nurse continued on to check my vitals and blood pressure and made the comment, ” your blood pressure is very high, your heart is racey, are you nervous?”

Me,  in my mind,  (well duh),   then out loud,  “yeah I am, this is my first time.”  She didn’t say anything after that.    After all of that, she got me set up with a blanket, pillow, made sure I was comfortable,  told my people where to find all the goodies, snacks,  and left me there til my oncology nurses came to get me all set up.  In the meantime I was trying to get as comfortable as i could cuz soon there was gonna be an onslaught of toxins being shoved through my veins.  I already want this day to be over.  It’s very hard to face the unexpected.   My little man is at school and I can’t wait to go home and see him.  I hate the path my life has taken but you gotta face the cards that are dealt to you.    After a few moments, my oncology nurses show up.   They introduce themselves,  Melissa & Sarah.   They are very nice women and I immediately connected with Sarah.   They come around with their rolling cart that seems to have everything in it and here we go,  tons of questions.  Medications I’m taking, what kind of cancer I have, my age, etc, you name  it, they asked it.   Now it’s time to get down to business 😧   I’m scared!!  I’m just not ready.

 They go over with me all the pre-medications I will need prior to chemotherapy.   This first session will have to be very slow to make sure I am not allergic to anything and that I don’t get sick.  Just the premeds alone will take about an hour to be administered.   They have to access my chest port.  This is where EVERYTHING will be given through.  Prior to coming I need to put a ‘BLOB’ of lidocaine one hour before appt on my chest port and cover with plastic band-aid.  This is to help with pain and discomfort when they access it.

 

 

Chest port  Chest port                            Lidocaine

The picture of my chest port was taken 3 days post port surgery.   Doesn’t look bad at all.   My surgeon did a great job.  When it heals completely, it should hardly be there.  And the incision on my neck, you can barely see it.  So, it’s safe to say that it’s all healing properly.

 

   This is Grapes.  Penny gave her to me when I was first diagnosed to lift my spirits and it did.   Look at those eyes.  I fell in love with her.   She will be with me for every infusion, she is my ‘prayer’ monkey.  And she’s even wearing my ‘hope’ cancer bracelet that the cancer center had given to me on my very first visit there.  Yes, she is here with me today.

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Grapes

It’s time to start 😥  Melissa and Sarah are ready to start premeds.  I have to take 3 different medications before I can have chemotherapy.   Decadron, Aloxi and Emend.  Like a said before, this is to help with those nasty side effects, like nausea and vomiting 🤢   

                     http://chemocare.com/chemotherapy/drug-info/decadron.aspx,     https://www.drugs.com/aloxi.html,      &     https://www.drugs.com/emend.html

Melissa is gonna be the one to give me my premeds.   My chest port gets cleaned off of the blob of lidocaine I had put on, now it’s time to hook me up 😟  My chest port is accessed.   Ouch, it was a small prick, but it still hurt cuz it’s only been 3 days since I had it put in, so the area is still very tender and sensitive.   I’m hooked up, no turning back now.  Premeds are started and this will take about an hour.  

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All hooked up!  Grapes and I

Premeds went well.  Not so bad.  Now it’s time for the real deal.   Chemotherapy time 😥  Melissa says she’s going to get suited up and she’ll be ready to start.  Suited up for what??   I’m starting with the chemo A/C, this is 2 chemo’s in one, a very intense one.   I hope I do okay with it.  They were explaining to me that in exactly 2 weeks I will start losing my hair and it was advised to cut it short before that time.  I’ve always had long hair.   I’m not ready to lose my hair but I can’t stop that from happening, let alone losing ALL of my hair.  It’ll start slowly falling out then it will come out in globs.    That’s gonna be a real shock, another sucker punch I’m sure.  *sigh*    Melissa comes out suited up practically from head to toe, goggles included.    Geez, what’s really gonna go into my veins??   The drug is brought out as well.  This made my stomach turn just with the packaging it came in.  The ‘caution’ label alone threw my stomach into somersaults. 

I don’t think I’ve ever seen a syringe that big. . .  AND there were 2 of them!!  Holy moly!!  This will be administered by Melissa, slowly.   I have officially labeled this one the ‘red devil’.   How proper, since it’s red.  Now this red devil will be entering my body every 2 weeks.   Here we go.   

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I can’t explain the look on my face.   I don’t know if I’m pissed off, in deep, deep thought, scared to all hell or what.   But I can definitely say, it looks like I’ve aged years.   It doesn’t even really look like me.   There goes the red devil, invading my body, twice.  I had it in my head that this was gonna feel like acid entering my body.   That it was gonna hurt and burn as it went in.  Honestly, I didn’t feel a thing, didn’t feel any different and no, it didn’t feel like acid.   What your mind can put you through *sigh* sometimes your mind is a very evil place.   After a while, that first drug was over and done with,  nope, didn’t get any reactions to it, so I guess I did okay with it.  Now for the next one,  Cytoxan,  this will be an IV drip that will probably take about 30 minutes.   I was told that I will get a burning sensation in my nose like if I took a big woof of pepper, then it will go away.   That’s a weird side effect.    Again, it came out in the same hazardous packaging.   ‘CAUTION’

This one didn’t seem as bad as the red devil, it just seemed like I was getting IV fluids, if that were only the case, I’d be much happier.   Anyway it did’t feel like I was getting acid either and sure enough about 20 mins in I got an awful burning in my nasal passage that made me very very tired.   It lasted for the rest of the infusion and I felt like I needed to sleep right then and there.   Finally that was all over and I was unhooked and my chest port was flushed out and bandaged up.   Man alive, I needed the bathroom horribly and I was told not to freak out cuz my urine was gonna be red from the adriamycin for the next couple of days and sure enough, it was.   I was also told not to hold going to the bathroom.  That it would be very dangerous for me to let those toxins sit in my bladder for too long.   So, when I need to go, I NEED to go.   No, dancing around til I find the time.  Gotta let it out.  

I can officially say,  first round of chemo, DONE.   I was told that I did great, I guess so.    3 more of those big boys and that’s all over.   All in all, that all lasted about 4 hours.   It was a long visit.   But they said the next ones won’t be as long.   It’s the first one that always takes so much time.    

As I was gathering my things to get ready to leave, Sarah, one of my oncology nurses came to give me a necklace.   She explained to me that it was from another lady who had been where I was now and she is a breast cancer survivor.   She had left it at the cancer center with instructions to give it to the next woman who was newly diagnosed with breast cancer and that woman ended up being me.  So, Sarah gave it to me and said it was from a cancer survivor.   Oh how that warmed my heart.   Thank you kind lady, it boosted my already down spirits.  I LOVE it!!  My goal is to be where you are.  A survivor 🎗💖

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A gift from a stranger 

I left feeling like a normal person, just very tired and still with the burning sensation going on.   That lasted for another hour and it was all gone.  On the way home I texted my other loved ones that I was done and it went well.     The rest of the night,  I felt as if nothing had happened, until later.   I didn’t feel any different other than having anxiety.    That night it hit an all time high and had a hard time sleeping.  However, I was glad that this day was finally over.   I was glad that I was able to come home and say, 1st round, DONE.  I couldn’t wait to cuddle with my son, I so needed that.   I couldn’t wait for tomorrow, just to put today behind me.  I couldn’t help but anticipate how I was gonna feel.   Will I wake up sicker than a dog, will I wake up feeling okay?    Oh how I couldn’t shut off my mind.   But, I was thankful that everything went well but I sooo wanted today to be over and a new day of sunshine to come my way.    A new day is just around the corner.   I hope I feel like me.  

I couldn’t wait for sleep to just take over. . . . . . . . I hope and pray I feel okay tomorrow. . .