Tuesday, November 22, 2016

I just am not one of those people

I know, I know. It's been forever since I have written.  So, I have a little bit of catching you guys up to do.  I have been back to M.D Anderson's twice since I last wrote anything.  


I was on medicines Aromasin and Affinitor.  I went back once and had great news.  No new tumors and some that I had, had become benign.  It was great news in fact.  So great I was too nervous to share it.  I felt like the moment I told anyone I would get some phone call telling me that they read the reports wrong and it was all a big mistake.  It really did not feel real.  I have been taking in bad news for so long i did not know how to deal with good news.  In a way I feel bad because I didn't give ya'll a chance to celebrate with me.  I should have shouted it from the rooftops but it seemed to good to be true.

Unfortunately it was.  I went back three months later just to find out I have new tumors on both my lungs and in my right hip.  Yes, multiple tumors on both my lungs.  Plus elsewhere things had gotten worse.  So, my good news was, in fact, short lived.  Plus, I am now faced with the fact that I have taken most of the medicine approved already and there are only two medicines left.  One that has a big ole chance of heart failure.  The other is your run of the mill, makes you feel like shit, chemo.  

And then my doctor once again tried to convince me to stop treatment and just let the cancer do it's job.  But live the last of my life without the burden of treatment.  She almost convinced me too.

So after a lot of debating it with myself and others.  Thinking of pros and cons.  And just being reasonable, I have decided on the run of the mill, makes you feel like shit, chemo.  My heart is too precious to me and it has been through a lot.  I do not know that it could handle another medicine that could hurt it.  I talked it over with my oncologist here and she agreed and said "Once your heart has taken a hit like yours has, it doesn't take much to bring it back down" or something like that.  

But I do go back to M.D. Andersons for an appointment to check my heart on the 28th of this month, then to see my doctor on the 30th, then to go and talk with Phase I Clinical Trials on Dec 1st.  Because that is the next step.  Phase I Clinical Trials.  I am no longer a candidate for other clinical trials because of my hearts history but apparently I can still do Phase I trials.  

I'm seriously nervous about all of it.  About the way my cancer seems to be spreading at an accelerated pace now, the chemo, the Phase I Clinical Trials, and watching my life span shorten right in front of my face.

I understand some people live their lives ready to meet their maker.  I just am not one of those people.  I want to be here to see Madisyn graduate high school.  I want to see her graduate college.  I want to see how her life ends up.  Does she get married?  Have kids?  Does she become the teacher she so wants to be?  Or does she become an artist, a graphic designer, anything related to art?  

I'm so nervous about it all.  I know plenty of people have gone before me and they rest in peace but I am not ready for it.  I know when I die, I won't regret dying but right now I don't want to die yet.

After all this time not writing, this is all I can think of to write.  I wish I had more for you today but, that's all folks!

Lots of love,

Shannon

Sunday, June 5, 2016

it could be worse.

So, today marks the eleventh anniversary of my marriage.  Haha.  As many of you know, I haven't been married for a long time.  But fortunately, my ex and I actually get along better than we ever have these days.  Better than when we were together.  Being the type of guy he is, he stayed in our lives because of Madisyn.  We met when she was just over a year and by the time she was two she was calling him dada.  So when we decided to call it quits when she was just five, he didn't want to lose her.  And I didn't want, yet another, dad to turn his back on her.  Though it was hard at times we kept it together and kept the relationship (their relationship) together.  He treats her better than he treats anyone in this world and really brings out the best in him.  We are lucky to still have this man in our lives.  We have definitely had rough patches and will probably have more in the future but all in all I thank God for his presence in our lives.  For one, Madisyn has someone to call dad, to love and be loved, and to turn to when she can't turn to me.  I have someone to go to when I don't know where to turn, if I am having problems with Madisyn or if I am just having problems.  Sometimes I may wish that he wasn't around but for the most part he is one of  my best friends.  Through it all he has stuck around and that is saying something.  He could had said, "screw this", a long time ago, but he didn't.  I have definitely said, "screw this", a time or two, and he still stuck around.  So, thank you Casey.  No, I don't talk about you in my blogs usually but here you go, this is for you. He is a father when he didn't have to be and we love and appreciate him for it. In fact we love his whole family who has always accepted us into the family.  He also has a girlfriend, Janna, who helps us out when she can too.  We love her probably more than him.  Kidding Casey.

 This month also marks the eleventh anniversary of having cancer.  That's right.  On my wedding day I was waiting to get in to see a doctor about a huge lump in my breast that I had no doubt was cancer.  I spent the day trying to spend as much time with everyone that I could because I felt like my life was coming to an end soon.  The only people I had ever known with cancer had passed except one so I didn't have high hopes for my battle.  I tried to memorize every moment of that day because I knew I had a battle coming and I would need these good memories to look back on.  Some points I found myself just watching all my loved ones.  My family, my friends.  I just sat back and watched.  At the end of the day I stayed and visited with all my family that had come into town just to see me get married while my husband went to hang out with his friends.  We weren't very conventional.  But I don't regret it.  I was happy to spend time with everyone, taking in every moment.  It was like a party to celebrate the end of one life and the beginning of the new life I was about to start.  I'm not talking about my new married life either.  Then when it came time for our honeymoon, I had the biopsy just before and the weekend in New Orleans was spent wondering what was going to happen next.  I knew it was cancer.  I knew my life was about to change.  I'm not sure Casey did.  He kept up a positive front, but I knew.  And the week after our honeymoon, on a Friday afternoon, we went to the doctor, with Madisyn in my lap, and were told, "Yes, it's cancer."  After that doctor's appointment we went out to eat.  To Outback Steakhouse.  I remember it like it was yesterday.  We didn't talk much and I spent most of the evening watching others around me and wondering what it was like to be them.  I wondered what, and if, anyone else had some life changing news 30 minutes ago.  I wished I could turn back time and life be like it was before.  I wondered what it was like to be worry free.  To not have the words cancer in your life.  I had already forgotten what that was like.  It felt like I was suffocating, the world was shrinking, and I was mad.  Mad that I couldn't be carefree and laughing and having a good time.  I didn't share any of this with my new husband.  I kept it bottled inside which made for a very awkward evening.  I did learn that putting up a brave front probably isn't the best idea in a relationship.  That is probably the one person you should be talking to about it and if you can't talk to them about it then you are probably in a bad relationship (ahem).  What is great is that we can talk about things now.  For the most part anyway. 

That first year was probably one of the hardest I had.  The fear of the unknown really drove me crazy.  I cried, all the time.  Every time I was alone.  In the car, in the shower, with my daughter (she was little, she didn't count, I felt I could cry in front of her, a lot of times she made it better with a hug), just always.  I was scared.  So scared.  I didn't want to leave my baby girl.  It has gotten easier over the past eleven years.  I have faced my worst fears.  They have been thrown at me and forced me to deal with them.  All the time I wasted scared of the moments I live in now.  Sure, it isn't the best most ideal situation but I deal.  And I realize it could always be worse.  Always be worse.  Eleven years ago, this life was my worst nightmare.  Now I am living it.  And it isn't so bad.  Just yet.  I pray.  I believe I am healed and every three months I get to find out what is happening in my body.  My prayers haven't been answered, or as I like to look at it, they have been answered, this is just the answer.  I may have cancer still, but I am not hospital bound.  I get to live my life everyday.  I get to enjoy my life everyday.  I may be on oxygen.  I may have other problems I have to deal with in this life but I am still here.  I still wake up every morning.  I still see the sun shining, the rain raining, the grass growing.  I'm still here.  So I can't complain.  I won't complain.  Not today anyway.  God has his plans for me and one day they will be fulfilled and my time here will be over.  But not today.

For those wondering how I am doing, I am doing good!  I started my new treatment and so far I just get fatigued more than usual with it.  So that just means I nap more.  No mouth sores just yet.  No hair loss just yet.  No hot flashes just yet.  I have had some nausea and vomiting but I think that was from real low blood sugar.  Damn diabetes.  Apparently it can really suck.  So now I am being careful and eating more often and hoping and praying it doesn't happen again.  Speaking of, I should go eat something.

xoxoxoxoxo

Shannon

Wednesday, May 25, 2016

nope, i'm not thankful for cancer

So, I am finally sitting down to write about my M.D Anderson's appointment.  Which I will.  My mind is going all over the place at the moment and I have other stuff I need to talk about.

I just read an article about a couple trying to get pregnant and it was so good.  But there it was again, that little reminder that I never will again.  Not that I am in any position to even think about something like that.  I am a single mother battling cancer.  A surprise that was given to me in 2005 and has gifted me (yes this is sarcasm) with eleven years (in June) of a nonstop fight for my life.  Some do call their cancer a gift.  I did, in fact, used to think this way as well.  I have come to a point in my life where, yes I am thankful for the people it has brought in my life.  I am thankful for the ability to spend more time with my daughter.  I am thankful for a stronger faith in God (though I could have a stronger faith without cancer too, I will never know).  I do know I have had to lean on him more in this life since cancer more than I probably ever would have without the diagnosis.  There are different things cancer has brought me that I am thankful for, though I am not thankful for cancer itself.

Not to throw a pity party for myself, because I am not.  I am not sad I am just stating facts in my life.  But I would rather work and pay my own bills.  I would rather be better and not on treatments.  I would rather be able to leave the house without oxygen bottles.  To be able to travel without the worry about oxygen.  I would rather not be on food stamps.  I would like to be thinking about dating and not just laugh at the possibility.  Laugh because, in my experience, I am not what others are looking for in a mate.  I want to think about the magic of having children and think it is a possibility for me to have more.  Don't get me wrong, I am completely happy with my Madisyn, and I do not feel as though I am "missing" anything by not being able to have more children but I do, sometimes, wish it was a possibility.  And who knows, I may meet someone who could love me for who I am, only God knows what is in my future.  But we will never have children together.  I wish I could work out.  I wish I could drive myself where I need to go.  I wish I could afford to do fun things, like travel.   I wish I did not have to be in some sort of pain all the time. I wish a doctor would walk into the room and say the medicine worked.  I wish cancer never fucking came that's what I wish.  That it never invaded my life and my privacy and changed it all for good.

I am 36 years old, to be 37 in October and I spent the last 11 years fighting.  I am tired.  I am frustrated.  I am ready for the miracle.  I am ready for people to not see cancer when they look at me.  I am ready for them to see me again.  I am ready to stop seeing friends die from this disease and do not want to be the friend who died from this disease.  I am aggravated.  I feel like I always write about the same thing.  Oh well.  

So if you have not already figured it out, the tests said I had growth pretty much in all my tumors (except one I think) and a brand spanking new one on my right lung.  Small but there.  So we stopped that treatment and are going back to estrogen therapy.  If you keep up with my blog you may remember us doing a biopsy on one of my tumors to redetermine the estrogen factor.  It came back 15% Estrogen Receptor Positive.  That is a weak receptor so we decided to go the chemo route last time.  I think we may have used all the chemo I can do because she made it clear we do not have many options left after this and the best route to go was estrogen therapy on a 15% positive cancer.  But she also said, we don't know, just because this one tumor is on the weak side of things doesn't necessarily mean all the tumors are on the weak side.  So I am at the "I will do whatever you say" point so we are doing it.

One thing I love about this hospital, my doctors local and non local, and my journey is I have no regrets in my treatment.  The only thing I kind of regret is not trying to raise $200,000 for the stem cell transplant they wanted me to do a ways back, because that is the only thing I haven't done.  But for the most part, I regret nothing.  My doctors have let me choose which way to go, what to do, and let me feel in control of this, the whole way.  We have been a "team" and I have not been blindly following orders like I did when I was first diagnosed.  I think that is something that helps me feel like I have done everything I can do.  I won't stop until they say they have nothing else for me, even then I may just go to another hospital.  It will be a tough decision to stop any treatment in the end, which I fear is coming closer than I want it to.  I mean what other choice will I have when they tell me there is nothing else we can do?  See why I am not thankful for cancer?

I am thankful for a lot of other things, just not cancer.

xoxoxoxo,

Shannon


Monday, May 2, 2016

oh this emotional roller coaster

I know it has been awhile since I have written anything.  It has been a busy few months.  Well emotionally busy.  I did have a minor surgery I am still recovering from.  My MediPort became infected (or so we thought) and antibiotics didn't work.  A hole formed and I was at the surgeons office one day wondering what was happening and what do we do about it and the next I was on the operating table.  It was so scary for me.  I was scared because of my heart and by the Grace of God came through it wonderfully.  He removed the MediPort and since then, daily, I have a home health nurse come a clean and dress my wound.  In fact, I see him on Wednesday to see what the next steps are.  Maybe I can stop having it changed every day, and maybe just twice a week or something.  I'm kind of ready for it to be over with, but I will miss my nurses!  It's like having a friend come over everyday to see you!

Back to being emotionally busy... It has taken awhile for me to wrap my brain around all of this. This new cancer in my right lung. Not only that, the fact that I have a tumor in my sternum, that crushed my sternum and patiently I wait, wondering if this is the day it crushes my heart.  In fact my head is not completely wrapped around anything.  I wonder what is better, a sudden death or this going slowly but surely.  Before cancer I didn't think about death so much.  I knew it would happen, sometimes I would have panic attacks about the fact that I may one day die and so will everyone else.  But it was nothing like this.


I can't watch a movie preview without thinking to myself "I hope I am alive to see that".  I can't make a doctor's appointment without wondering if someone will have to call and cancel because I died.  Am I going to see my daughter turn 16?  Am I going to see her graduate high school?  What about college? Will I see her get married?  Am I going to be able to finish reading this Harry Potter series?  What about the One Year Bible I started, will I finish it?  It's thoughts like these that haunt me daily, nightly, and all time in between.  

The crazy thing is, at the same time I am wondering, "what am I doing with my life?" I think to myself, "You should go to school, you should be working, you should be able to keep your house spotless at all times"  All these things come and go, alongside all the other things.  I certainly could hold a record for the most negative thoughts at one time.

The depression that seems to have come with my last M.D. Anderson's appointment is outrageous.  All television shows make me cry.  Commercials make me cry.  I feel as though I have the hormones of a pregnant woman.  Quite impossible since my removal of my Ovaries and Fallopian tubes but still something I find myself struggling with now.  

Oh my gosh and I can't even get into the anxiety.  I wouldn't know where to start.  I know I have discussed this before but it has such a level in my life I can't not bring it up.  I have anxiety for anything and everything.  

But in a way, I feel I am dealing as good as I can.  My brain may be going in a swirling motion at all times.  My heart beating fast yet steady.  Plus sometimes I am as numb as can be.  Frozen in place not knowing how to move.  Not knowing what to do.  But in ways I am happy.  Happier than ever.  Sure I get frustrated about not driving but I love my life.  My little apartment.  My family.  My friends.  My survivor sisters.  I have more happiness than some perfectly healthy people out there I bet.  In a way I feel I am lucky.  I know I am lucky.

I have some good people in my life that keep me busy.  They come in all forms.  Friends, neighbors, family, fellow survivors,nurses, doctors, in their own way, they all keep me in line.  They help me stay on top of my life.  So thanks to each of you for being you.  For keeping me busy.  For helping me enjoy what's left to my life and not letting me stay down for too long at a time.  I appreciate you.  You all know who you are.

Most of you have brought up to me the topic of setting up a gofundme of some sort.  To help with hospital bills, bills, groceries, necessities.  So I want to let you know I am looking into it today and hopefully will have it set up soon.  I will share.  One thing I want to set up is a gofundme for my funeral expenses.  I know my parents don't have the money for it and I don't have life insurance so be on the lookout for that as well.  As soon as I get everything sorted I will post. 

Also there has been conversation about a meal calendar and stuff that I may need help with so I will be looking into that as well.  I will look into what kinds there are and what fits my needs best.  

Thanks again everyone for caring enough to even ask me to do stuff like this.  I am honored to have you in my life.

Saturday, February 20, 2016

damn lungs

So.  This is one of those suck ass blogs.  One that I dread writing, but I know I have to because I feel like, well, this is what I do.  I write about it.  When I don't know how to react, what to do, how to feel, where to turn, I write.  So here I am.


I'm gonna start this off but saying I have been feeling good.  I noticed I had to purposely use my oxygen more; like on walks to go bring the dog out, at home when I normally wouldn't, stuff like that.  Didn't think much of it but something like, "hey I'm supposed to be wearing it anyway".  Other than that, my pain has been controlled, I haven't been having nausea or other problems.  My iron has been okay except this last appointment on Tuesday when I had to get a Procrit shot.  

My anxiety is killing me right now.  Just the fact that I have to think about what is going on inside me, it just is killing me.  I've been doing a good job of forgetting it.  Or just not thinking about it so far.  But writing this is making me think about it.

So I went to Houston this week for a check up.  I felt fine, like I said.  I felt confident.  But the doctor came in immediately asking how was my breathing.  I shrugged like, "fine I guess".  The treatment had been working mostly everywhere but there are some new spots on my right lung.  She showed them to me and they are so bright.  Now that they are bright they compared them to the previous scan in November and the spots were there but very light.  So I have cancer in my right lung.  There, I said it.  My stomach is slowly untwisting itself.

The worst part wasn't finding out I had cancer in my lung.  It was what she explained after.  She explained how now that it is there, don't be surprised if something happens.  Examples:  it spreads into both my lungs, or i die, or it spreads into other organs.  She just wanted to prepare me for anything.  I cried like a baby for probably six hours.  Silent tears flowing as we drove back from Texas, imagining Madisyn without her mom, picturing the discussion of deciding for a millionth time where she would like to live when I'm gone, thinking about how everyone's life will continue on once mine is over.  

Then I started panicking about how we could die in a car wreck on the way home.  Anxiety just has been sneaking in everywhere.  It is getting ridiculous.  Car rides especially, and especially at night.  Suddenly I am noticing pain in all my tumors and I know it has got to do with my anxiety but it is driving me nuts.  

This is just another phase.  It will pass.  I will get used to it, just like I did when I found out it was in my bone.  It's just gonna take a minute.

xoxo

shannon

Thursday, January 7, 2016

Bring It!

Oh where do I start.  Recently I began to have seizures again.  It's been many many years since I have enjoyed the company of these things.  Turns out they weren't seizures but me blacking out while shaking at the same time.  No sign of epileptic activity, thank God.

It all started in October.  I had just moved into a new apartment and I was in the middle of unpacking one day, a friend over helping me, when suddenly I fell out while my body moved uncontrollably.  Freaked my friend out for sure.  But we continued on with unpacking.  I made an appointment with my neurologist and moved on.

I continued to have these "episodes" and after doing a brain MRI, it showed nothing out of the usual.  Praise God again.

I went in for chemo the following Tuesday to find my iron was low and my kidneys were out of whack.  So for the next few days I went in for fluids and iron and was given a shot to increase my red blood cell count.  We hoped this would work, because I was on my way out of town that weekend, to Texas.  So, off to Texas we went.  We went a little early to spend time with my nephews, so by Wednesday when I was to see my doctor, I was really wore out.  Turned out I was in kidney failure again and I needed two pints of blood.  They admitted me for a couple days and I started feeling much better.  Turns out the anemia was causing all the havoc on and in my body.  Since the transfusion I haven't had one "episode".  Due to lack of oxygen in my blood caused by the anemia, is their educated guess on why I was having those episodes.  Super glad they stopped.  I was out and home by Thanksgiving.

Ever since the transfusion my bloodwork has been normal!  I pray it stays this way and I don't have to undergo another transfusion.  They said to expect more.

We had good holidays this year, blessed to have someone sponsor us for Christmas.  Plus I was given a blessing by The Life of a Single Mom that helped me through the holidays.  They are such an amazing organization.

God really saw that we were taken care of this year.  It may have been an up and down year, healthwise, but I remain firmly planted in the beliefs that God will provide all we need.  And he has.

We struggle from time to time but we find our footing and keep our heads held high.

Madisyn had a wonderful year.  She discovered her Panthrobotics team and loves it to death.  Speaking of, if any of you are interested in sponsoring through donations to her team, she needs some sponsors.  Email me at shannoncmcalister@gmail.com.

I guess I should mention, I had two biopsies done today.  On my skin.  Most probably a rash caused by my treatment.  But there are a couple stitches in my arm and on my cheek.  For some reason I wasn't expecting the stitching but oh well.  You deal with what you gotta deal with.  They don't hurt, just kinda itch.

Well here's to another great year!  Bring it 2016!

Sunday, November 15, 2015

Our Operation Blessing video from the 700 Club





Thursday, October 29, 2015

loss

I'm writing today because I need to write.  I just had a seizure so everything I was going to say is a little hazy.  I haven't had a seizure in a long time and I forgot how it affects you.  My body hurts, I'm slurry with my words, and everything about today is, like I said, a little hazy.


But I know I really wanted to write and had a passion for it, finding my laptop was top priority yesterday and I finally found it last night.  We just moved to a different apartment so everything is kind of everywhere right now.  

We have been so blessed with this move.  The church sent out some volunteers, some friends volunteered, and some family volunteered.  It was something so amazing to see.  I felt God's blessings upon us tremendously.  On the last day of the move (my birthday), the crew from church (a veterans group) bought lunch, a cake for my birthday, and a great piece for my den.  It was a great way to end the week of moving.  I've also had some great friends who have come and helped me unpack.  It's hard with all the junk I have and I really appreciate everyone's help!!!  Thank you!!!

I've had to all this while dealing with the loss of a loved sister.  A SurviveDat sister.  If you are a regular on this blog then you know already but if not SurviveDat is a group for young women with breast cancer.  We meet monthly, we chat on group me, and we all love each other dearly.  In August our sister, Cynara, cancer came back.  She had just started chemo and was having a rough time but nothing could have prepared me for October 13th, 2015.  The day we lost our angel.  She was one of my angels.  She helped me through some tough times.  All of the girls have helped me through tough times.  And Cynara was special.  She could take the worst news and spin it for the positive.  I truly can't believe this world lost her.  Her life spirit seemed like it would last forever.  It hurts, it hurts, it hurts.  Everytime I hear or see anything that reminds me of her, it hurts all over again.  Everytime any of her wisdom goes through my mind, it hurts some more.

And it pisses me off.  She is one person who was not supposed to die first.  I actually feel that way about everyone.  I feel like I should be the one who has passed.  I mean, why do I get to still be here when they don't.  I've been going through this the longest, it should be me.  She loved and appreciated life so much.  It's not fair.  I hate cancer.  It's been a little while since I have lost anyone to cancer.  The last person a sweet little girl who I was a Brownie Troop Leader for years ago.  She was in middle school and developed a form of brain cancer.  It was horrible.  Her name was Payton.  I can barely think about it without losing it.  I know it's survivor's guilt, and I know it's perfectly normal for me to feel this way.  But it still gets to me.  

I know death is probably the last thing you want to hear about, but it's a part of life.  

xoxoxo

shannon

Friday, September 25, 2015

pneumonia, navelbine, neupogen

Hi!  So I sit here wanting to write a blog post but with nothing I really can think of to say, you guys know me, I'm sure I'll talk your ears off.  Or eyes.

A little bit about the past few weeks.  First off I began Navelbine, which I know I already told you about.  I had my second treatment on Sept 8th and started to think this chemo was really kicking my ass.  I was slow as can be, tired, my body hurt everywhere, my oxygen was lower than normal, my temp higher than normal, and just totally out of it.  Two days later on the 10th I went to my Internal Medicine doctor for a "well" check and asked to be checked for pneumonia.  I was like, it's either this chemo that's going to kick my behind or I have pneumonia again.  Well he checked for pneumonia and a few other things.  Sure enough I had pneumonia again.  We caught it early, thank God.  If I had let that go any more I don't know how I would have made it.  I was pretty much confined to the couch.  My body aches were so bad I could barely walk, I would take a bath with epsom salt and feel better, enough to go to bed.

So, Tuesday, the 15th, I went in for treatment but my white blood cell count was low.  To low to have chemo.  Low enough that I was to come back everyday and get a shot called Neupogen.  The Neupogen side effects had me laid out on the couch again, internally screaming in pain.  Then on Wednesday, I ran a high fever that night.  I know the protocol, which is take Tylenol (for me at least, my kidney's can't take ibuprofen), and make an appointment for the doctor in the morning.  So I waited until my already scheduled appointment the next day, called early, told them what happened so along with the shot I was getting blood work done.  Worried that it may have something to do with the pneumonia my oncologist sent me to my internal medicine doctor and it wasn't the pneumonia but with all my symptoms combined they wanted me in the ER.

I rush home and start packing.  I bring an ungodly amount of things with me to the ER in fear that I may be stuck there for weeks on end again.  It's like I'm moving in.  My mom couldn't bring me to the hospital so I called my friend, Trisha, who being awesome, dropped everything and brought me to the hospital.  Thanks Trisha!  By the time I got there I was running fever again and my counts had gone all funky.  So they sent me to my own room and started two iv's in me and got fluids and antibiotics running through me as fast as they can.  For two days I stayed in there, receiving fluids and antibiotics, and left there Saturday, with a script for more antibiotics.

Unfortunately when I left the hospital something had changed.  My legs were killing me.  They still are.  I wonder if it's from being in the hospital and not getting up much but it started while I was in the hospital, I just didn't know the extent of it until I got home and needed to go upstairs.  I have to take one stair at a time going up or down.  My legs are so painful.  So when my landlord came to me with the option to move into one of the one floor apartments I jumped on it.  It took me a couple days to realize that this leg problem isn't going away just yet and I need a one story!  I'm so excited.  I move November 1st and can't wait for that day.  So if you are free November 1st, I need help moving!  I know it's the most fun ever, but I'd really appreciate it completely.

So that brings us to now.  Last night I went to the most beautiful fundraiser.  It was called Bust for Breast Cancer.  Different artists designed different bra's.  They were so creative!  There was even one that had a red cape and the two cups were made into wolf heads.  I loved it!  I went with a friend whose daughter won a spot to design and decorate a bra.  Just so you know, it's a long waitlist for people wanting to participate in this show, and she got in!  We were so proud of her.  Her bra was so sweet with flowers and hand crafted bee's, just the sweetest thing.  I had to be in a wheelchair but I still had a blast.  Madisyn really enjoyed herself and I ran into some great people I hadn't seen in a long time.  Plus I sported my brand new pink wig and everything.  Thanks Shannon for bringing us!  You have no idea how much I appreciate it!!

That's about it for now.  I appreciate you, my readers, thanks for taking time to read my nonsense.

shannon
xo

Thursday, September 3, 2015

chemo time

August was a long month for me.  I was literally watching the calendar, waiting for September to get here.  We had that trip to Houston that I talked about in my last blog.  I did have the ultrasound guided biopsy to check on it's responsiveness to estrogen therapy.  It wasn't a bad procedure.  I've had enough of them now, I just kind of sleep through it.  Turns out though, it has a very low percentage of estrogen receptiveness.  It's changed from a pretty high percentage, in the beginning, to this now. Which apparently it does that sometimes.  So  my brother wanted to see what tumors looked like so I had them give me a copy of the ultrasound and then videoed it for him to see on youtube.  In case you are interested here is a video of my tumors.


Because of the low percentage we have opted for chemo.  It's called Navelbine and I started it Tuesday of this week (Sept 1).  It really hasn't been bad.  I was exhausted after chemo on Tuesday.  Fell asleep for four hours and then went to bed at an earlier time then normal.  But seriously, fatigue I can handle.  Who knows, I could have just been tired from the day before and the weekend.  I had a busy weekend, fun, yet busy.
With my Single Mom's group we went to see the movie "War Room".  Such an amazing flick.  As long as your Christian, I mean I assume, because it's about Christianity.  We ran into quite a few other groups from church.  I also attended the kickoff party for a group at my church called "Pure Intentions".  It was fun, good food, good peeps, good discussions.  Monday, with my SurviveDat girls, we went out to eat and to the movies.  Another great time.  I saw "No Escape".  I really liked that film too.  It wasn't horror, just suspenseful.  Edge of your seat, suspenseful.  That one is about a family who moves to somewhere in Asia right as rebels take over the government and start massacring Americans and people from the company the dad works for.  The family is on the run for their lives with a bunch of "almosts".  Almost dying, almost getting caught, almost being blown up.  Like I said, a bunch of "almosts".  But I liked it.  So what I was getting to was it may not have even been the chemo making me tired.  Normally it is the chemo making me tired like that on chemo day, but I'll find out next week which it was.


So, I was fatigued on Tuesday, still managed to babysit one of the cutest babies ever, Calvin, my nephew.
Erin Guedry Photograpy, LLC

He will be a year this month.  Go Cal!  As soon as he left I hit the hay, for the second time that day.  Then Wednesday I was zombified.  I barely had energy to walk up and down the stairs in my place.  I stayed under blankets on the couch watching who knows what on tv.  Later I realized I was running a slight fever, so that was probably the culprit there.  Today I had enough energy to shower (YAY!!!), just haven't been able to get the energy to do the dishes, or clean the house like I want to.  Today I am keeping an eye on my temperature.  Still kind of tired too.  But all in all I am doing good and am satisfied with this chemo so far.

shannon

Friday, August 14, 2015

too much thinking and decisions...

I met with my Houston oncologist today.  There was a lot said.  A lot of confusing information that I'm trying to process.  Maybe by talking on here it will help me process it.  So here goes.

First thing we discussed was my cancer hadn't progressed that much. She said I could possibly stay on the drug, Halaven, that I was taking.  After telling her about all the pain from the growth of the tumors she agreed, that if I think we need to stop then we need to stop.  The tumors may not have grown significantly but they have grown enough that I feel them pressing on my chest.  So much pain.  My pain doctor adjusted one of my meds so the pain is now controlled but if it's growing to where I can feel it then that's too much to me.  My local oncologist agreed with me, so like I said, my Texas doctor agreed as well.

I was disheartened to find out that although my heart is better, it's not completely better.  Because my heart got so bad last time (as the doctor put it "scary bad"), plus my pulmonary embolism, with the fact that I'm on oxygen, I will not qualify for clinical trails anymore.  I also won't be able to take anymore Her2 medicine's.  So I'm limited in treatment option's still.

We discussed an estrogen targeted treatment option.  I wasn't completely for it.  I felt like I've been on many of those with no success.  At that point my doctor than brought up the fact that I've been on alot of chemo and it's always progressed.  Then she reminded me that we will always have progression we just keep changing medicine.  She told me we had a finite amount of chemo and I've done most of it.  I guess she was trying to say we should try the estrogen medicine and save chemo for when that stops working.

She then gave me this other option.  Palliative care.  I quickly nixed that and tried not to be offended by it.  I'm not giving up.  Not now, not ever.  I will take every last medicine, then when they have nothing left to offer, go to another hospital.  I guess this is the way of the chronic cancer patient.  

Then she said, let's just biopsy one of your tumors, see if it's still going to respond to estrogen therapy and make our decision after we get the results.  So that's what we decided.  I have an ultrasound guided biopsy on Monday and sometime after that find out the results, then make the decision on treatment.  

After I left I just kept thinking about the fact that she brought up palliative care.  The second doctor to do so.  I just kept wondering, is it really time to be thinking of that?

No.  I decided it definitely is not time to start thinking that way.  I have way to much life left to live.  I'm not giving up.  If I stop treatment that's what I'm doing, giving up.  At least that's the way it feels.  I've lived this long already.  What a waste it would be to give up.  I may not like the way my life is right now and has been for the last decade but at least I have one.  I'll keep trucking as long as the Good Lord allows.  He has plans for me yet.

Tuesday, August 11, 2015

survivedat: fear of recurrence

Tonight I had the blessed opportunity to go to my SurviveDat meeting at Cancer Services.  After having to miss the past couple meetings due to my M.D.Anderson trips, it was all I could do to get my butt there.  You know how it is:  "it's raining, I don't want to do anything today" or "I kind of feel like crap I want to stay home".  You have to fight all of these feelings and make yourself do stuff (at least I do these days).  It's stuff I look forward to every month but gosh darnit if it isn't raining every month on that day.


I am one happy person.  I am so glad I went.  When I tell you these are some of the strongest and most amazing women I know, I am not exaggerating.  Everyone is so supportive of one another.  I think at least four of us felt like crap but all of us were led there tonight.  Nothing was going to stop us.  Not Alyssa's radiation burns and pain.  Not Bertina's sinus headache and pressure.  Not my feeling of all around cruddiness. Not Christy's recent chemo treatment.  Not Cynara's recent hospital stay after being diagnosed with metastatic breast cancer.  Walker and all she was there.  That really says something about this group. 

We are like family.  Sure, we would rather not be in this club at all.  We would rather not have cancer.  We would rather not be dealing with what each of us has gone threw but we can't change it, we let it empower us.  

There was a guest with us tonight, an oncologist, there to answer any questions we may have and the topic was "fear of recurrence".

Three of us don't have to worry about that anymore.  We have metastatic breast cancer and we had fears at one point but they have been faced, or in Cynara's case, are being faced.  It really says a lot that all three of us showed up for this meeting when it was a topic we don't have to deal with anymore.  At least I thought so.  

What it did do was give me flashbacks to when I was first diagnosed and my fear that it would return in the other breast and my absolute panic attacks about the subject.  In all honesty, I respect these women.  I lived in fear those few months before I got diagnosed again.  I tried to knock it out of my brain, to give it up to the Lord, to believe in His divine healing.  I tried, I tried, I tried.  I wasn't as strong as these ladies are.  They all talked about how they cope and I could see that none of them felt the way I felt nine, ten years ago.  

If I would have been asked this question in this support group back then I would have cried.  I would have let it all out and just boo hoo'd.  I'm telling you, these girls are strong.  They already have the peace that took me a couple years to develop.  I was strong and fierce on the outside, but on the inside I was a basketcase.  At home I stayed in tears when it was just me.  Anytime I could find alone time I cried.  I cried and I cried and I cried.  In the shower.  In the car.  In the kitchen.  Spending time with Madisyn and reading her favorite book "Mommy's Head Tickles".  I couldn't make it through the first page without crying.  I hid this side of me from everyone but my mom and Madisyn.  At first.  

Over the years I have learned to cry on other peoples shoulders.  My sister, for example, my best friend at the time, These are tears for other reasons.  But still tears that were falling.  

Dealing with the fear of recurrence can be a crippling ride.  If you aren't careful you can let it take over your life.  I can't say enough about therapy and anxiety medication.  Plus prayer.  Prayer is very powerful, but sometimes prayer needs a little help from modern medicine.  At least for me, I did.  Anxiety medication has been a Godsend and I fully believe God sent us doctors and scientist to do their work to complement His.  So be aware of your feelings, or your loved one's feelings, your friend, or family member.  They may need your help in recognizing that they need help.

xoxo

shannon

Saturday, August 8, 2015

setback

It sure has been a busy summer this year.  Madisyn has been busy with a couple camps, a visit to Miami to see Casey, Panthrobotics, and being a social butterfly.  I have been busy with Texas.  


Not completely meaning to sound all ominous and depressing but I guess that's the way it sounds coming from me.  It started in June.  We scheduled my yearly cervical cancer check and made it our "vacation".  Pretty much, every year I have an appointment or two, during the summer, at M.D. Anderson's.  We normally try and find a way to make them our vacations.  Whether it's going to the pool at my aunt and uncle's, going to the movies, museums, visit friends and family, some way they are vacations.  They kind of have to be or I'd have to say, we haven't had a vacation in eight years.  

So like I said we started in June.  Plan was, visit my aunt and uncle, have my appointment, visit my brother and sister in law, all the while trying to do fun stuff.  Museums were scheduled, movies were scheduled, and I planned for us to stop at Galveston Beach on the way home.  First, a last minute meeting for Madisyn's Panthrobotics was going to make the Galveston Beach trip impossible.  We would have to rush home instead of enjoying the trip home with stops.  So that made me grumpy.  I miss the beach.  It may not be Destin, or the Caribbean, but it's a beach.  I haven't been to one of those in many years.  Well suddenly there was a tropical storm warning or something to that extent.  Worried that the roads would flood like they had recently done and we would be stuck in Texas, with Madisyn missing her meeting, and my mom was just ready to go, we rescheduled my appointment and zoomed home.  Of course no flooding happened, it was all for neigh.  But whatever, it gave me an excuse to go back.

So we went back in July.  Madisyn decided she wanted to stay home because some kind of "con" was in New Orleans and she HAD to go to it.  So it wasn't going to be a vacation for us.  Just me.  I have no idea how to do that anymore so I ended up hanging out at my aunt and uncles and then my brothers and sister in law's and that was that.  I had my appointment, and headed home.  Very relaxing, I got to spend time with my brother's sons, who are both under the age of two.  So very cute.  The youngest six months maybe.  Five months then, I think.  

I got the results back and I'm cleared for another year!  So exciting for me!  The last thing I want is another cancer.  Well that and almost anything else.  Cheers!

Then this past week we had Operation Blessing from the 700 Club come and do a story on us.  It was quite an experience.  We did almost 15 different scenes (yep that's me acting).  It was a mixture of so much fun and so tired at the same time.  Everything makes me tired so, that wasn't really a big surprise.  I got to meet some amazing new people who came from Operation Blessing.  They were all fantastic.  Maybe one day I will go into it more but for now, that's all I have the energy to say.  It will air sometime at the end of September during their fundraising time.

The main point of this blog that I'm writing today is to tell you guys that the treatment I have been on hasn't been working.  I head back to Texas this week for an appointment Friday to discuss what treatment options I have left.  Fortunately I had Operation Blessing here this week so I had no time to dwell on the negativity of this situation and just have known I will deal with the outcome this week.  I pretty much, already knew it wasn't working.  I have been in alot of pain where a couple of my tumors are and so I knew they were growing and pressing on areas that they weren't before.  So it wasn't that much of a surprise, really, not at all.  It's a setback, yes, but one I'm used to and can handle.  You wouldn't think it, but you kind of get used to bad news when you hear it enough.  You become numb to the feelings involved.  I really just let God deal with those, I don't have the time or energy for them.  

Well thanks for reading!  I'm so tired, so good night.

Shannon

Tuesday, June 30, 2015

a vomiting type of week

First things first:  NO MORE HEART FAILURE!!!!

Today was chemo day.  Yet again, I went and let them pump poison in me for five whole minutes (yep that's how long the chemo I'm on takes, awesome right?).  I appreciated the nausea meds they pumped into me before that, especially once I got nauseous and had to take a second dose of nausea meds.  Seriously, how nauseated would I have been if I hadn't gotten pumped full of nausea meds.  This time we weren't even home yet before I started feeling sick.  We had done our weekly (well two weeks on, one week off) routine of going out to eat after chemo.  Normally not a problem.  Today it wasn't either, just we took longer than normal I guess.

My mom has been out of town for a week now and my Dad has stepped in as chauffeur.  He has been taking me to all my doctor appointments, grocery trips, and whatever else Shannon needs to do's.  Not always with a huge smile on his face but nonetheless funny as hell.  The funny part is usually when he gets angry.  At the drivers, at the people walking, at the drivers, at the traffic lights, at me for wanting to go to the store at all.  You know, the usual, but normally he is surprisingly pleasant to be around.  Yep I said surprisingly.  Mostly because our history has us butting heads and screaming at each other for the most part.  But we have found we have a shared passion.  A passion for eating lunch.  Haha or just for eating.  So instead of just the weekly lunch, I've been getting a "every time we are out" lunch.  Yay for those kinds!  Hint Hint Mom.

I have been thoroughly enjoying it and am hoping mom is having a blast and ends up staying later than planned.  Just kidding Mom, we miss you here.

Today Madisyn came back from Miami, where she was visiting Casey.  Well she got back this morning, enough time to be invited to come eat with us after my doctor's appointment.  Yay!  Madisyn hadn't come with me in so long to chemo.  Not that it's a fun "let's go there!" type of place but it's fun for me to have her with me.  I'm fairly positive she does not feel the same way.  She will be fifteen in August and I know she would rather be anywhere but at mom's chemo but she is her mother's daughter.  Can't turn down a free meal.  I trained her well.  We've learned this very well through these years.

So today we chose to go venture out onto Government to Yvette Marie's located at Circa 1857.  I enjoyed my veggie muffuletta.  It was delicious. Roasted peppers, fresh water mozzarella, grilled eggplant, artichoke, heart of palm, and a homemade basil pesto with kalamata olives.  So good. As a side I got a small sensation salad.  It was so good.  Garnished with candied pecans, blue cheese, and a yummy tomato.  The food isn't heavy and you don't leave wishing you hadn't eaten so much, well I guess you could if you chose to, just saying the food is lite and some of the better around here.

As we were driving home dad came up with the fantastic idea to stop into Whole Foods and hit the gelato bar.  Wrong! They don't have it anymore!  Whatever!  We did grab some cherries that are on sale right now, but we still left upset lol.  Well so that brought us driving by Dearmen's and we swerved into there for some milk shakes.  By this time I didn't know it but my chemo was sneaking horribleness into my stomach.  We ordered our milk shakes, mine, a chocolate banana, was really good.  Well I'm telling you I didn't get five sips into it before I was in the bathroom sick.  Now I have a barely drunk milk shake in my freezer which I may or may not ever touch again.  Chemo ruins the good stuff.  The worst part was it suddenly started storming while we were there and waited until it cleared.  A good thirty minutes.  I could barely hold myself up.  I could barely focus on anything anyone was saying.  All I could think was:  BED NOW!

After the ride home, I was literally in bed less then five minutes after stepping inside my house.  I woke up so much better.  Praise GOD!!  I have to learn to stay on top of my nausea and other side effects.  I had gotten out of the habit of taking nausea meds in my regimen and it has just been as needed but starting today, they are back in my regimen.  I had a vomiting type of week last week so it's best to be on top of it instead of chasing it with meds.  It's been frustrating to say the least.  

CHEMO BRAIN ATTACK!!!

I forget where I'm going with all this and what I was going to say next and all of everything.  So that is all for today!

xo 

Shannon