Tag Archive | Triple Negative

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!!!!

20170607_185317-1

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 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.  

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Grapes

   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.

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 🤢   

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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. 

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Adriamycin  😫

Yikes!!  Look at what’s in the bag.   This is what came out of it!

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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’

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Cytoxan

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. . .

 

 

 

 

Back to class, this time, chemo class 😕

March 15 – Chemo Class

Today I have to attend chemo class.   I guess there is a lot to learn about receiving chemo?  So here I am at the cancer center with MaryBeth ready to learn about all the toxins they will be putting into my veins and all those nasty side effects I’ve heard about over the years from other chemo patients.   My nurse navigator is here to explain it all.

We start off with a whole bunch of stuff she brought out for me to look over.   Several booklets and a bag full of useful stuff I may need. 

First we go over all the symptoms I need to watch out for after receiving chemo:  

  • Fever, chills or sweats that soak the clothes or bed.  Difficulty breathing (shortness of breath) .
  • Severe cough or cough with green, yellow, or bloody mucus
  • Diarrhea or constipation
  • If I’ve had little or nothing to eat and drink for 24 hours
    • sores or pain in the mouth that make it hard to eat or drink
  • pain or bleeding

Sores in the mouth?   Ouch,  ( the picture they gave me looks awful and painful)  I hope I don’t get those.

 Image result for chemo sores in mouthImage result for chemo sores in mouth

Side effects to be aware of ( every patient is different and not all experience the same thing)

  • Low blood counts ( white and red)
  • Low blood platelet counts
  • Higher risk for infection or bleeding, Fatigue ( extreme tiredness ), Nausea, Diarrhea
  • Constipation, loss of appetite, pain, nerve changes, changes in your mouth
  • Changes to your hair, skin, and/or nails. ( I’m going to lose my hair,  ALL of it)
  • Anxiety, depression, or other emotional changes.
  • Problems with memory, attention or concentration.   Sex and fertility issues, allergic reactions, blood cots and damage to organs.   

 Sheeesh!!   Sounds miserable!    How does one make it through with all those side effects and this it what I have to look forward too?  For the next several months?   😟

I’m no longer able to take anything containing Ibuprofen.   Tylenol only!!    I can’t use anything that has alcohol in it ( mouthwash, hand sanitizer, etc.).  And. . . .I could even have nerve and muscle damage.   Totally not a walk in the park and I have to endure this just to get better and cancer free?    *sigh*   I guess it’s better than the alternative.  

Here is my treatment regimen:  A/C +  Taxol

Pre-medications:  

 Fosaprepitant (EMEND) 150 mg,    palonosetron (ALOXI) 0.25 mg,   Dexamethasone (DECADRON) 12 mg.   All of these 3 are to help with nausea and vomiting that can be caused by the chemo.   This is to get ahead of the nausea rather than to wait for it to happen.  I guess that’s a good thing.   I don’t wanna be sick.  I hate being sick to my stomach   🤢    These will be given to me prior to chemo. 

Chemotherapy drugs:

Doxorubicin  (ADRIAMYCIN) injection 101.4 mg  +  Cyclophosphamide  (CYTOXAN)  1,015 mg in sodium chloride.

This chemo combination is a very intense and aggressive one.   2 chemo drugs together.   I will be receiving this one for 4 cycles.    Once every other week with a week in between to recoupe.   I start this one tomorrow 😧  yikes!!    It all sounds horrifying but that second drug just sounds creepy,  Cytoxan.   It all sounds toxic to me.  The day after each session of the A/C I will need to come in and get a shot of Neulasta.   What that is is a booster shot for my white blood cells so they don’t go down too low.   This could put me at a very high risk for infection.  It was recommended to start taking Claritin the day of the Neulasta injection.    This is to help with bone pain caused by the injection and should be taken the day of and the next 7 days.   hmmmm,  who would’ve thought that Claritin would help with bone pain?

 After the 4 cycles of A/C are complete then I start taking the next one:    

Paclitaxel  (TAXOL) 131.2 mg 

Supposedly, this is a much lighter chemo and I’ll start this one on May 11 and it will be given to me weekly for the next 12 weeks.     I have a long road ahead of me.  This will take me clear into summer and there is still possibly surgery and radiation.   Yup it’s safe to say my year will be long.   I guess I better not make any plans.  But my goal is to get to July 27th.  If all goes well this day will be my last chemo infusion.   I can do it.  I know I can get there.  July 27th, you are marked on my calendar.    I will see you soon.   I’m sent on my way with tons of chemo information and off to do lab work.  I will need to do lab work before EVERY chemo infusion to make sure my cell count is not too low.   If it ever is,  chemo will be halted until my cell count is up.   I don’t want this to happen, I want to stay on schedule and get to 7/27.  

After chemo drugs:

Dexamethasone  (DECADRON)  in pill form.   I will need to take this for the next 3 days after chemo in the morning and at night to keep nausea at bay.   And I’m also given a prescription of Prochlorperazine (Compazine)  this is a just in case med for nausea as well.    Geez, all these nausea medications,  I hope I’m not spilling my guts out for the next 5 months, that would be horrible!!!!  I can only hope for the best and continue to stay positive.   It is all very intimidating though.   I do my lab work and we’re headed home.  When MaryBeth drops me off, I tell her. . . . . . 

“Tomorrow I start killing that little f***er!!”

The evil Rollercoaster

That first and second week left me mentally, emotionally and physically drained!  I had no idea I had set foot onto an evil roller coaster that was gonna take me up to highs then swoosh back down to lows and whip me around like a rag doll.   And just not let up or let me off.   Appointment after appointment kept flooding in.  I was so overwhelmed with it all it’s amazing I didn’t lose my shit or have a nervous breakdown.  I was poked and prodded and felt up and run through machines and more ultrasounds and it just didn’t stop.  It was ruthless.  The rest of February was nothing but doctors and tests and more information.  If I thought February was rough, it’s nothing compared to what was looming over the horizon.  😞

Feb. 23 –

I had to do an MRI, my first one ever!   They want to make sure that none of those little suckers have gotten loose and swam to my lymph nodes.   We have lymph nodes in our armpits and around our neck and if any have gotten loose they would go to our lymph nodes in the armpits first because those nodes feed off of the breast.  And if they did, I would need surgery to remove those nodes. 😦    They have to hook me up to an IV so they can inject contrast to see the images better.    The tech can’t find my veins.   I have very sneaky veins, they like to play hide and seek.   She tried all of the possible areas.  By the time she found one, in my least favorite spot even,  I had bandages on all areas!   I looked like I had been making tracks.    That machine was huge and NOISY, geez,  good thing they gave me some headphones to wear and listen to music during the procedure.   It wasn’t so bad but it did take FOREVER!   and it was cold in there.   We’re all done!  I can change and go home.  I would have results soon.  I hope it comes back good.  

Feb. 28 – results.  

 I get the call with my results.   The MRI showed nothing in my lymph nodes.  They are clear!!  Thank the Lord, but. . . . they see a shaded area in my left breast that needs further evaluation.   Man alive!!!   Is this ever gonna end?   With every bit of good news I get,  it seems like I get double the bad news 😟  I can’t take this anymore.    They have me scheduled quickly for ANOTHER ultrasound and ANOTHER MRI guided biopsy at the end of the week.   *SIGH*

That evil roller coaster whips me around like a silly ass rag doll through March

 

Mar. 3 –  

 Ultrasound and biopsy day.   Well, here I am yet again at the butt ass crack of dawn to do more testing at the imaging center.  I really hope nothing is wrong with my left side.  I don’t need extra things to worry about.   It’s already super stressful and exhausting on all levels.  I have one of my ‘work sisters’ with me, MaryBeth,  she is another one of my cancer crusaders.   She too has been with me since I told her my news,  they no longer let me do anything alone 💚 All of my ‘work sisters’ have been fabulous!!  See, I have no bio sisters,  they are my sisters,  I have 3.  So she is here with me for support and company.   After the last time I was alone, I got the shock of my life and it was here, at this place.   So, now I ask someone to come with me.  My work sisters are so different outside of work.   They’re awesome!!!  I just love them!

Time to get ready for the ultrasound, that will be the first test.    Nope, they can’t see anything from the ultrasound, the area in question is way too small.  Thank God for that. . .I guess?     This will need the high tech machinery of the MRI.   I’m sent to do that.     Now I’m back with the noisy machine.   I meet the doctor who will perform this biopsy.    He is soooo cool.  LOVE THIS DOCTOR.   He wants to make me as comfortable and happy and relaxed as he possibly can.   They must of told him of my experience with the first biopsy,  remember 1. . .2. . .3. . .POP?    Yeah, I’m still traumatized by that.   Anyway,  he was super good with me, gave me lots of numbing medicine to be comfortable as ever.    The only thing I felt was pressure, no pain at all.  He was very attentive to how I was feeling.   He took 7 samples and that wasn’t bad at all.   And he did make me feel  comfortable.  We’re all done.   I need to do a mammy,  not a regular one but a simple one with not so much squeezing.   They need an image of the titanium chip he inserted into the breast at the area, to let future technicians know that the area has already been addressed.  I forgot to mention that my right breast also has a titanium chip from my first biopsy.  This is a mandatory procedure when we go in for biopsies, a titanium chip is inserted to the area.   You don’t feel them at all, but will always be there, they are never removed.  They stay with you for a lifetime.  And no, they don’t set off medal detectors.   The doc comes out and explains I should have results in a few days.  He was super awesome.  MaryBeth even says,  “if I ever have to come in for a biopsy,  I want HIM to do mine!!”   Haha,  he was great.  Ultrasound and MRI done!!   I can go home.  

Mar. 6 – Echocardiogram.    

I need to do an echo to make sure my heart is healthy enough to endure the heavy chemo they have planned for me.   I didn’t ask anyone to come with me to this cuz it’s just a heart scan, but geez, once I got here I was overcome with anxiety.  Like bad.   My heart just about beat right out of my chest.  I almost started crying, so here I am texting my friends to try and calm me down.  

When I first found out my news, I reached out to Tammy, she is the one who also went through what I’m going through right now.  Every little thing I go through, I ask her about and what it was like.   I’m grateful I have her to walk me through things.  So naturally,  I’m talking to her right now, trying to bring my anxiety level down.  

We do the echo, we’re done in like a 1/2 hour.  I leave.  Why was I in such a panic?  I think everything that is happening so fast, is getting to me.  It just doesn’t slow down.   I’m trying to stay strong and positive and I think it’s wearing me down.   Plus, I’m still working through all of this,  I’m not missing a beat.  And its wearing on me bad. 

Mar. 7 – Results of 2nd Biopsy of left side

I get my results from the MRI guided biopsy.  Great news!!!  Everything is clear for that breast and so are my lymph nodes!  Wow, finally some reassuring news.   Do you know how bad I’ve been needing good news?!    I really needed this!   🙇

Mar. 8 –  

Time to get down to business.    The hospital already has me scheduled for my chest port.   I will need a chest port inserted into my upper chest so that when I start receiving chemo, this is where it would be rather than through a vein on my arm.  Through here they will access my central vein.  I’m scheduled for the 13th of March.   eek.   That roller coaster is taking me through cork screws!!

Later that evening, I get a phone call from Trish,  she is the one who will be doing all of my scheduling at the cancer center.  The doctor would like to start chemo as soon as my chest port is in 😧  I had a feeling this was gonna happen.   She lets me choose a day of the week that will work for me.   I do Thursdays.   I’m off on Fridays and Saturdays, so this will give me a few days to recoupe.   My first treatment will be on the 16th 😥  Once again my evil roller coaster is picking up speed and whipping me around.    She gives me the weeks’ schedule of  appointments.   3/13 – chest port procedure,  3/15 – chemo class, 3/16 – 1st round of chemo & 3/17 – Neulasta- booster shot.   Here we go,  it’s all happening soo fast 😟.    Chest port, treatment, etc.   I don’t want chemo but I have to.  Chemo just scares me!   How is all of this gonna affect my son?   I’m gonna lose my hair.  I may be sick a lot and in bed and tired all the time.  I just break down and cry.  Honestly,  the reality of it all is just too much.  I can’t take it.  I cry my eyeballs out.  Chemo will go on through summer and the only thing I can think about, is how all of this will affect my son. 

I text my oldest brother, Jake, and tell him that chemo will start soon.  We both figured this was gonna happen once my port was in.  I’m soo scared.  But once all of that happens it’s time to get down to business. 

My treatment schedule:

4 cycles of intense chemo ( once every other week )  then 12 weeks of a different chemo   ( once every week )

I give Jake my treatment schedule and just *sigh* heavy.  He tells me,  “its just a trip down the beach with two sets of footprints”  Referencing, ‘Footprints in the Sand’.  I LOVED that he told me this and it did make me cry more, but I needed to be reminded of that.  In response, I said,  “Yes, I know and when I only see 1 set, I’ll know that I was carried.”    It’s not the kind of beach walk I was hoping to take but at least I won’t be alone.   My God is ALWAYS with me!!

footprints in the sand

Mar. 12 – Day before chest port

Lab work  ✔  No aspirin 5 days prior to procedure ✔   No ibuprofen 5 days prior to procedure ✔   No blood thinners prior to exam ✔   Need to have a driver with you ✔   Nothing to eat or drink after midnight  ✔   Check in time is 10:30, procedure at 11:00  ✔  I’m gonna starve!!!  😕

Mar. 13 – Chest port procedure day

It’s Monday, it’s procedure day.  I can’t have anything to eat or drink and my procedure isn’t until 11 and will last a couple of hours.  I have to go downtown, I hate downtown.  Good think Jake is with me.  I needed someone to be with me and drive cuz they’re gonna put me under for the procedure and I’ll probably be loopy.   I’m such a light weight when it comes to anesthesia.  

It’s amazing how calm I am today.  I have no nerves at all.  The doctor comes in and explains the procedure to me and shows me how and what will be going into my body and where it will be set.  After a few days I shouldn’t feel it at all.

http://www.upmc.com/patients-visitors/education/catheters/Pages/implanted-port-care.aspx

They’re running behind,  almost 12:30, I finally get rolled back.    I get all hooked up, the anesthesiologist is funny,  she’s great!  She asked me if she could get me anything and sarcastically I said, “like a hamburger!”   She couldn’t bring me any food but she did tell me she would give me a ‘kick ass’ cocktail that would put me in a twilight.    And in twilight I was.   I remember seeing the clock at 12:30 now it says 2:30.  Where did 2 hours just go?  It felt like 5 minutes.  They’re unhooking me and rolling me back out.    Everything went smoothly.   

20170313_143944

Me, right after surgery!  I’m soo groggy.

They find my brother and we go to recovery.  I’m exhausted!   And loopy and starving!!   They bring me apple juice and applesauce, mmmm.   Finally, a little something to eat and drink.  I swallow it up.  A few minutes later,  uh oh, mad heartburn is coming on.  Oh crap, I wasn’t able to take my acid reflux meds cuz I couldn’t take anything prior to the procedure and having apple juice and applesauce was NO BUENO!!    

4:30pm, we finally get to leave!!  On the way home  “I need to throw up, I feel like shit!!”  My head is pounding!  I was so dehydrated from not being able to have anything to drink from the night before causing my pounding headache, and my acid reflux was in full force.  I have a headache from hell.  The drive home seemed like an eternity not to mention it was rush hour from downtown.  I had to spill my guts, luckily we made it home.   I didn’t feel bad from the surgery itself but I did feel awful from everything else.   It was a horrible combination of dehydration and mad acid reflux.

After a little bit of rest, some food, my acid reflux meds and some rehydration.  I actually felt like my old self again.  Back to normal.  Just a bit sore and of course, tired from the day.  

I went to work the next day feeling as good as new.   

 

 

Sorry, I know this post was super long but I hope you stayed with me til the end.  It’s all part of my blind journey.  

 

Know your Lemons!!

We’re gonna take a break from my story and talk about early detection and self exams.  

 Ladies and also men, yes men,  always check yourselves!!  Men too can get breast cancer, as crazy as it sounds, it can happen.   So, please check yourselves often.    When we check ourselves we can find something long before a doctor ever will.   Admit it, how often do some of us even go to a doctor?  Some of us don’t go to a doctor until we really feel like crap or feel like we’re dying.   Always remember that when it comes to cancer, this could be too late.  

 CANCER DOESN’T CARE!!    

Plain and simple, cancer doesn’t give a crap.     Cancer doesn’t care what you have going on in your life,  it doesn’t care if you’re a brother or a sister or if you’re a parent.   It doesn’t care if you just got married or had a baby.   And it certainly doesn’t care how old you are!  You could be a teenager  (although rare),  a twenty-something, fifty-something or an elderly enjoying retirement and all the years they put in to get that.   It doesn’t care!!!     Cancer doesn’t care if you’re struggling in life or if you’re thriving.   And it doesn’t care what other health issues you may be dealing with.   Cancer is ruthless and remember it doesn’t care.

Cancer is Silent!!

Cancer is silent.   A very silent devil.    Cancer is not painful, not usually, until it reaches a painful stage and we start to feel ill.   By this time, it could be too late.    Early detection is key.   Don’t wait!  If something doesn’t feel right, have it checked right away!!

Be Proactive and KNOW YOUR LEMONS!!

Learn how to check your body and do self breast exams on a regular basis.   Like I said before, early detection is key.   Know your lemons.   Know what your breasts are supposed to feel like.   If they look different, feel different, have a different color to them or you have discharge, have it checked out.   It is always better to be safe than sorry.   That’s how I found my lump, by doing a self breast exam.   And because of this I scheduled a check up 2 months earlier than my normal visit.  Thank God for that for I caught it and took action early.   So can you.   If something doesn’t feel or look right, have it checked.  You know you’re body, if it shouldn’t be there then it shouldn’t.   This doesn’t just apply to breasts’.  Check all your lymph node areas for tenderness or lumps.  If you feel unusual fatigue or dull pain, have it checked.  Below is an image and a link on KNOW YOUR LEMONS – the 12 signs of breast cancer.   Please take a look at it.  It is very helpful.

Know your lemons

http://www.bbc.com/news/health-38609625 –  The 12 signs of breast cancer.

Self breast Exams

Try to do them often.   Whether in the shower or lying down,  get into the habit of always checking your breasts.    This could save your life.  

Breast-Self-Exam-in the shower

. . . . . . Or save your life lying down!!

 

breast exam lying down

http://www.breastcancer.org/symptoms/testing/types/self_exam/bse_steps

Save the Boobies

HAPPY CHECKING YOUR BOOBIES!!!  😛

BE PROACTIVE AND STAY FREE AND CLEAR!

 

Love Sue

 

 

 

 

The Whirlwind

I got my news on the 13th,  finally owned up to it on the 14th, told a few other people on the 15th and by the end of the week and the next, I was thrust into a whirlwind of appointments that was ruthless and never ending.   I didn’t have time to process what was even happening.    And I still managed to show up to work with a smile on my face as if nothing was ever wrong.   I still don’t know how I pulled that off.   I guess it’s because I made a choice.  I made a choice to fight and not be a quitter.   A choice to stay positive, no matter how hard it was, with my chin up always.  I did EXACTLY what my Auntie Ross said to do,   ” Roll up your sleeves,  put up your dukes and FIGHT!!”   So I did.

I met with EVERYONE:   The nurse navigator, the oncologist,  the radiation oncologist, the surgeon, the high risk clinician, the social worker and had to have an MRI done and another ultrasound.  This will be my team of doctors starting now and throughout my treatment and they wanted to make things as less stressful for me as possible so that i could concentrate on getting cured.   I was examined by almost all of them.  In one week I had so many different hands on my boobs, feeling this and feeling that,  I didn’t enjoy a single one.  I don’t wanna be touched anymore!

More detailed information about my diagnosis was given to me and a better explanation.  By this time the shock of it all was slowly starting to wear off and I was able to listen.  But for me the bottom line is –  My boob is trying to kill me!  How awful is that?  It’s almost not fair!  This is the same breast that nursed my son when he was a baby.  So that he could get good nutrients and vitamins through breast milk to be a healthy baby,  which he turned out to be.   How is it that the same breast that nursed an innocent baby to good health is the same one that is trying to kill me now??  What the heck?  I need some esplaining here, cuz I just don’t understand.  It is almost not worth it to have boobs.  Yeah, I’m starting to feel that way. 

Anyway, here is some very helpful info:

My diagnosis – 

  • Positive for invasive adenocarcinoma
  • Histologic type:   Ductal
  • Nottingham grade:  (G1 – 3)  G3  ( I am at the highest grade ) 
  • Positive for moderately differentiated ductal carcinoma in-situ  ( meaning that the surrounding tissue of the tumor has signs of pre-cancerous cells )
  • Tumor size:   1.2 cm – 1.7cm

http://www.hopkinsmedicine.org/breast_center/breast_cancers_other_conditions/invasive_ductal_carcinoma.html

Immunohistochemical  studies: 

  • Estrogen receptor:   NEGATIVE
  • Progesterone receptor:   NEGATIVE
  • HER2 protein expression:  NEGATIVE

Normally, negative is good.  In my case, this is bad, real bad.   If either one of those receptors were positive then that is what would have caused my cancer.  It would have been hormone induced.  So, in order to kill the cancer, we would have only needed to kill the supply ( a positive receptor,  the hormone ).  Since all of mine are negative, hence the ‘triple negative’ breast cancer, the one and only form of treatment for me would be chemotherapy.   Nothing else would work.  😟

https://tnbcfoundation.org/understanding-triple-negative-breast-cancer/

After consulting with each doctor, they all had very similar and positive outcomes for me. 

  • I caught it very early
  • I’m young
  • I’m healthy
  • The tumor is very small
  • They said I had the best attitude 🙂 

They didn’t see any reason for me not to be cured!   That is their goal and mine:   CURATIVE

Today in 2017, breast cancer is 98% treatable and curable.   I pray I’m in the 98%. 

This is how things were going to play out – 

  • Surgery
  • Chemotherapy
  • Radiation

There was the possibility of doing chemo before surgery in hopes of shrinking the tumor til maybe it would disappear.  But this would be up to the surgeon and frankly, surgery couldn’t come sooner.  Now that I knew what was in my body,  that painful little asshole couldn’t come out fast enough!   If surgery was yesterday I would’ve been just fine with it. 

Turns out, the surgeon thought it best to do chemo first.   She explained that if chemo would shrink the tumor then maybe she would be able to preserve most of my breast by not having to remove so much breast tissue.   Or maybe chemo would shrink it away all together.  It was small enough.   Talks about chemo, mastectomy, double mastectomy and reconstructive surgery left me so overwhelmed I burst into tears in her office.   Just last week,  I had a normal life,  and now all of this.   And knowing that chemo would actually be starting first left my  mind reeling.   Chemo scares the living shit out of me.  Not even gonna lie.   It’s a good thing I had someone with me this time, Clara Sue.  She is another one of my non biological sisters.   A ‘work sister’.  She’s been there non stop since I gave her my news.  She keeps me grounded and positive and gives me unconditional love and support.   I’ve come to lean on her more than I realize.  She’s my big sister.   I love her!!

Next.  I had to meet with the high risk clinician.  Oh boy, let’s see what she has to say.   It’s Karen, I know her!   She shops at the store where i work.   So, I am happy that its her, of course, not under these circumstances.   She is happy to see me, but not happy that I am there to SEE HER.    We talk about all of my family history related to any kinds of cancer.  She’s trying to pinpoint why, someone like me,  young, healthy,  ended up with breast cancer.   She suggested I do a genetic test to see if I carry the BRCA1, BRCA2 gene.   After carefully going over family history,  I fit into a guideline where it would be very wise for me to be tested.  

https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet

These were the guidelines:

Multiple cancers:  A combination of cancers on the same side of the family

  • 2 or more:  breast/ ovarian/ prostate/ pancreatic cancer
  • 2 or more:  colorectal / endometrial/ ovarian/ gastric/ other cancers

Young cancers:  Any 1 of the following cancers at age 50 or younger

  • Breast cancer
  • Colorectal cancer
  • Endometrial cancer

Rare cancers:  Any 1 of these rare presentations at ANY age

  • Ovarian cancer
  • Breast: male breast cancer or triple negative breast cancer
  • Colorectal cancer with MSI/IHC, MSI associated histology
  • Endometrial cancer with abnormal MSI/IHC
  • 10 or more gastointestinal polyps

 

Sadly, I fit into all 3 of the categories:

  • I have 2 family members ( a cousin and and Aunt ) on the same side that have had breast cancer
  •  Me,  I am under 50 and diagnosed with breast cancer
  • I have a ‘rare cancer’:  triple negative

It was best I get tested.  If I am a carrier of the gene, this means there are HUGE implications for my loved ones.  It puts all of them at an increased risk for breast, ovarian, gastric, colorectal, pancreatic, melanoma, prostate and endometrial cancer.  It also puts me at a greater risk of developing a different kind of cancer,  like ovarian.    Wow, the bad news just didn’t stop coming in.  This stressed me out to no end.  Now my family could be affected?  😧  My son, my brothers, nieces and nephews.  Talk about a heavy heart.  Soo, with all of my loved ones on my mind and in my heart, I did the test.    Please, please, please Lord,  let it be negative.    Let this one be negative.   I won’t know results for about 4 weeks.  I’m gonna go out of my mind by that time.   

This test scares me!!   A lot.  It has me so worried..  It’s one thing to be worried about just me.   It is quite another to be worried about all of your loved ones who could be affected by this. 

What was happening to my life?   Suddenly I had no more control over it.   I was vulnerable.  I really hate this!!

Damn you cancer!!   We are not friends and I don’t want you in my life.