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

Saturday, May 2, 2015

pain, pain, pain

I've been a little out of it these days.  Last weekend this pain started in my left side.  It reminded me of times when my right side would be in pain because of tumors.  I've been battling it all week, trying not to overtake my pain medication so in case this doesn't end, I don't run out.  It's been an amazingly hard week, and I would say I've never been in so much pain before, but that would be a lie.  I can remember times when I would be in so much pain I literally couldn't move.  This pain, although excruciating, isn't as bad as it could be.  There's a heaviness, stretchiness, stiffness, pulling, in my left side.  I'm hoping it's just that I did too much last weekend, and my body just isn't what it used to be.  I have had many issues there and maybe it's all come together.

Or it could be this tumor we found on my ultrasound this week.  No knowledge if it is benign or cancerous but possibly it could be sitting on a nerve or something.  I don't know.  I just pray it goes away, real soon.  My house is a wreck, worse then normal, and I had gotten it looking good.  I haven't been able to use my left arm all week and I'm left handed.  I hate being a whiny baby but life is just different when you are in so much pain you can't think straight.  So, that's my week.  Well part of it.

Like I said, I had testing this week.  Ultrasounds, CT Scans, and I was supposed to have a PET scan, which is a big part of watching my progress or no progress of my treatment. 

My previous post I told you about how my diabetes has gone out of control.  I have been put on medication for it but it hasn't gotten low enough.  Up until this point in my diabetes life, it wasn't high enough to take medication.  Suddenly it sky rocketed and so I've been on the medication trying to get it level.  Prepping for the PET Scan includes eating a high protein meal the night before with no carbs.  I followed the diet, and in the morning my sugar was 210.  High but low for what it had been.  So you would think that five hours later with no eating or drinking except water, it would be lower.  My sugar was 259.  The PET Scan uses glucose to indicate metabolic activity and uses that to explore the possibility of metastasis.  With the high sugar, it just won't work.  Normally the CT Scans are taken at the same time.  Because of my high allergy to the Iodine Contrast used in the CT Scans to highlight the cancer, my scans aren't the best quality.  So who knows if we will be able to find out anything about my cancer.  But if we do, it happens this Tuesday. 

If my cancer has continued to grow while on this chemo I have been on, then we head back to Houston for further analysis on my treatment plan.  So things have been off lately.  I've been off lately.  I just pray everything is okay and I won't have to change chemo's.  I'm tolerating this one better than I have others.  It's just a waiting game for us right now.

That's it for now folks!

xo
Shannon

 

Wednesday, April 22, 2015

sick of problems

What do I talk about today?  This is the question I wonder every time I sit down to write a blog, whether it's here or on my other, more geared toward young women with breast cancer blog www.mypinkprincessesblog.blogspot.com.  I remember there used to be a time when my mind was always wanting to blog.  Blog.  Blog.  Blog.  I always had something to say and couldn't wait to say it.  These days I pretty much have to start writing and it just comes to me while I'm writing.  It's probably why they get so scattered.  So here goes it.

Lately I've been dealing with something kind of new.  If you recall or even if you don't, I was on long term high dose steroids for a long period of time, I don't know two plus?  It was about the time I went into the hospital in July of 2014.  In fact I think the same week, when I was diagnosed with diabetes as a result of the steroids.  No problem, I think to myself, I've been there done that.  And I have, years ago after being on steroids for an extended period of time while undergoing treatment.  I had diabetes, then it went away.  After that I swore I would never be on them again no matter what the doctors wanted.  Well, fast forward a few years. I start a treatment that starts to work just as we realize I'm allergic to it.  Great right?  So I was sent to an allergist who put me on a buttload of pills, a regimen to keep me from having another allergic reaction.  And lots of steroids were involved.  I'm still battling the 50+ pounds that those wonderful steroids gifted me.  It's kind of hard with my whole lung problem thing to exercise but I'm not giving up on it.  

Well, when I was first diagnosed with diabetes in 2014, it wasn't so bad.  In fact the medicine my doctor gave me to lower it actually put me at dangerously low levels in my blood sugar.  I had to stop the medicine and I kind of coasted through diabetes thinking it was under control.  Until recently.  My blood sugar suddenly started going through the roof.  At first I ignored it.  Yes, ladies and gentlemen, the girl who knows without a doubt, to never ignore the problems in your body, ignored her medical issue.  Eventually even stopped taking her blood sugar.  That's me, if you ignore it, it goes away, right?  Well, my oncologist, when she did my blood work started to notice the trend of increasingly high blood sugar, and I couldn't ignore it anymore.  Not to mention I started getting lethargic at times, after meals, sometimes just randomly.  I could say, hey, that's the chemo, but I know when the chemo kicks my ass, and it's not all the time.  Just a few days following my treatment.  
I knew I had to address it but didn't want to deal with another problem full force.  I was sick of problems and felt I had enough to worry about without thinking about diabetes.  My heart for one, because of my heart failure, I need to watch my sodium.  Two, my lungs, I have to stay on top of my oxygen levels and wear my oxygen (one of the things I hate about it).  I've learned if I think, just because I am home and not doing much I don't have to wear my oxygen, then the next day I'm so short of breath it feels like an emergency.  I have to focus on breathing, which, come on, who does that?  I do, now anyway, I think I have learned my lesson when it comes to my lungs.  

So, diabetes has been my main demon for the last few weeks, a month probably two. Although,  I still do chemo, lost some hair, can't decide if I want to shave it.  It all fell out towards the front of my head, some patches underneath but I look really weird with half hair half no hair.  I wish it fell out Mohawk style again, that would have been cool lol.

I went to the doctor today about my diabetes and we spoke about a lot of things.  He's wondering if maybe it's Type 1 diabetes, but isn't sure.  He's checking to see if I have a build up of acid in my body, and if so he's admitting me to the hospital to be treated for that.  It was a lot of information all at once about a subject that is still kind of foreign to me.  Depending on how the medicine I started on today works, I may or may not start insulin.  So this next week, I call with my readings daily so he can monitor my progress.

Sometimes everything seems like too much.  I just want to kick and scream, cry and beat things or people.  Fortunately, I have learned to hold in those emotions but sometimes they bubble to the surface trying to get out.  Today was one of those days.  Please pray for my sanity, for my ability to handle what comes my way, my health, my daughter's health, my ability to parent, and anything else you may think I need help with.

xo,

Shannon


Friday, March 27, 2015

i almost am starting to like going to the hospital (giggle)

Well, it's definitely been awhile since I have been on here.  Either that or a lot has happened that makes it feel like awhile.  I think its the latter.  Most of you have an idea of what has been going on in my life or know parts of it.  So I will start and hopefully work it all in for those who have no clue.  Be prepared, remember this girl is ADD and bipolar so it's always fun to see the results.

I caught myself up by stopping to read my last blog as to know the last of what you know.  It wasn't as long ago as I thought.  So that's good.  I had my second treatment in my first cycle of my new medicine, Halaven.  Two days later I had two teeth pulled by a dental ministry from the church.  My TMJ doctor sent me to them because he volunteers sometimes and knows sometimes they have an oral surgeon on hand.  He found out there was going to be an oral surgeon and felt it was best I go to him.  He said it was because I was so complicated, my heath and all.  We have known each other for awhile now and he was worried about me.  I am the luckiest girl in the world.  They rushed me in, first thing (after waiting three hours, you have to get there early, to be at the top of the list, first come first serve).  But I was sixth on the list, and they brought me in and got started on me first thing.  I felt so special (grin).  Sometimes there are benefits to cancer, I guess.

So back to chemo, I started feeling kind of bad.  I felt like I was on deaths door.  Really it wasn't as bad as that but it was bad enough to go to the doctor the following week after a multitude of odd, off the wall, symptoms.  Like the right side of the top of my head went numb.  My shoulder blades hurt, real bad.  My vision went blurry.  My skin started feeling like I had rashes in places with no evidence of the fact.  I could go on but I've actually forgotten everything.  Well major fatigue.  So I went into the doctor, we did bloodwork and I was sent home to rest and get better.

The next day my mom comes banging on front door.  She lets herself in, she has a key.  I didn't really have time to stop and answer the door, I was of all things, chopping of dog treats because the treats are big and my dog is small.  She comes in yelling my name and I'm like, "What?".  She sounded so worried.  She said, "Come on, we have to call an ambulance, you have to go to the hospital, right now.  Where's your phone?" (she had gotten dropped off by a friend, thank you Mrs. Susan!) Naturally I say, "What are you talking about?  My phone's upstairs."  She then says, "The doctor has been trying to call you all morning! And I have been too!"  So I respond, "I just got downstairs!  Couldn't have been all morning.  Well, it could still be on silent from the doctor's appointment yesterday...and why an ambulance, will Mrs. Susan come back and bring us?"  After some more conversation I found out that some blood work had come back off.  My kidney count.  I was in kidney failure again.

Mrs. Susan did indeed drop everything and bring us to the hospital.  Me and my rude self, jumped into the shower (last time I was in the hospital I wasn't allowed to shower for the longest time" and stopped to pack things (last time I ended up being in the hospital for awhile having people bring me stuff from the house).  As far as I know Mrs. Susan was able to do what she needed to do.  Mrs. Superwoman.

After freaking out some doctors with my kidney count and then them setting me up in a oh so grand, room of my own, they tell me "You should plan on staying with us for awhile."  Of course, I had planned for that so I'm just like, "Okay."  I, then, made myself at home.  Found out I had a blockage of sorts going on which caused my kidney's to fail.  It didn't take much, I recovered in a few days and was let out three nights later.  I spent the first day out of the hospital just sleeping. Like all day.  All night.  I stayed at my parent's place for the first couple nights out of the hospital.  A friend I hadn't seen in FOREVER came to visit me the second day and I couldn't have been happier.  Thanks for the visit, Holly.  We need to do it again soon!  Love you!

Back at home it was back to the daily grind.  We were blessed to have two of my friends come over and bring us a steak dinner!  Fillets!  Amazingness.  It was nice, we got to visit for awhile too, it was so nice to see them!  Thanks Rachael and Cherie!  You guys are the best!  Love you both too!

I almost am starting to like going in the hospital because of all the visiting I get to do.  Completely joking!  Kinda.  I love seeing all of you, it's the best part of the hospital and the recovery when I get out.  Visiting and laughing.  I mean seriously.  It's the best.

Then out of the blue I get these two packages.  A friend I met through my cousin, sent me to shirts.  They are so cute.  One is shortsleeve with the word Love on it in script, whereas the other is longsleeve but at the moment I can't remember what it says.  I have to do some work on that one.  The sleeves are fitted and because of my lymphodema my arms don't fit.  The shirt is fine it seems but I just need to cut the sleeves.  I was thinking of adding black lace to go with the color of the shirt, but I am not a designer nor have I ever tried to be one.

I've had a few side effects since kidney failure.  Weird ones, I will try to explain but I don't even think my doctors understand what I am talking about.  In both this patch on my back, right under my neck, and under my breasts across my whole front, I am having this weird pins and needles pain.  At first I came to the conclusion that it may be a sign that I am about to lose feeling in those places, because I have lost feeling in a bunch of places and it's felt similar before it goes numb.  Only thing is, they haven't gone numb yet.  I've kind of gotten used to the feeling for the most part.  Now it only hurts when touched.  But it's weird and I don't like it.  Could it be the chemo?  I don't know.

I had chemo again, on Tuesday.  Had a kind of rough one yesterday.  I didn't know what was wrong with me.  I was hot, I was cold.  I couldn't get comfortable.  I was miserable.  Looked up my drug's side effects, and those, plus some others I am not mentioning on here, were all listed.  I had to find a detailed website.  Because you know me, I get all of those side effects, the ones no one else gets.  The 2%.  That's just how I roll.  No but really, I am actually pretty lucky to not get any major side effects.
That is all for now my dear friends!

Love you,

Shannon




Sunday, February 15, 2015

i'm way too self absorbed to be planning your demise

I've been thinking alot lately.  Whether it's because I have more time on my hand, or a side effect of being off of the drugs I have been on for years, or because my mom fails to put the radio on if Walton and Johnson is over and I fail to notice because I'm in such deep thought.  It's like a bad movie, or maybe good, I don't know.  My inner monologue has Taylor Swift's 1989 cd as it's background soundtrack.  Probably because I use her cd to get me moving in the morning because it's so upbeat and it gets me going even when I don't want to.  But I've been thinking about alot.  So here goes:


(Taylor Swift's 1989 cd is my background to writing this blog btw.  Addicted, I know)

One thing that comes back to me over and over again is people.  People who have come in and out of my life.  Some leave on good terms, to a see ya later.  Some, no contact ever again.  A brilliant woman told me recently "when one door closes, another one opens".  That was definitely not the first time I had heard that saying.  But the first time I had heard it in reference to loss of friendship. Not loss from death.  I was upset over the loss of a friendship that had been with me for a long time in my life and it was found out that she couldn't be trusted or relied on as a friend, and I had a hard time getting through those feelings.  I'm not positive that I am 100% through those feelings but her saying those words helped.  A lot.  More then any other advice given.  I was with a group of girls and they all agreed with her.  So I put it to the test.  I let go, even more.  It was like magic.  Suddenly friends I hadn't been in touch with because of my and my crap and them and their stuff, you know marriage, making babies, growing up or whatever, were contacting me.  Party here, lunch there, visits whenever.  It just was so helpful, so thank you to everyone who has helped me through this time, and those that God put me on their heart to reach out to, and for all the killer advice.  Maybe the old friendship will be restored one day but it will be different, I know that because I'm different.  I'm happier now.

It also helped me work through a fight with someone  I decided it would be the last fight because they seemed to live on it.  I mean I'll be there when she needs me, anytime day or night, I just won't put as much stock into it.  She didn't even seem to trust me.  Guys, to be honest, I am way too self absorbed to be planning your demise, or stalking you, or hurting you.  I feel rude saying that but I have to say it.  There's not much more to me then what you see.  I'm bluntly honest.  I ask what I want to ask, say what I want to say, and if I forget I ask again.  I think that last thing is the part that freaks some people out.  I forget.  If I want to remember I write it down.  Then I can't find the notebook I write it in so I have to ask again.  So now I sound like a creeper who's trying to plan your demise by asking everything, again.  Did I mention I was self absorbed.  Really bad quality.  Especially when chemo has burned out your memory cells for ten years and it's like one long Memento  experience.  That movie freaked me out dude.  Messed with my head for days.  But get it into your heads people I will not call by name on here, I am just a normal, aggravating, crazy at times (but you like it), friend.  I'm not an international spy sent with your family as targets, or a crazy stalker (I mean no car people...if I had one I would be doing stuff...fun stuff...maybe stalking you on the side...kidding). I don't even know enough about a computer to cyber stalk you. I mean in more than a facebook kind of way.  And that's only if I'm like "oh I wonder how such and such is doing, let me look at their page", then I like pictures from today to the past six months.  I may be bi-polar but that just makes life a little more adventurous for us all.  Praise God for modern medicine.  Most of this is old stuff that was just on my head today.  And frankly it's my mental friends who think this stuff...you know who you are...and YES I am talking about you!!

And husbands I am not trying to get into your wives pants.  Sure this comes out of nowhere on here but it's a thing in my life as a single woman, more so one that hasn't dated in years and has no plans to in the future, but even when I was single with a baby this happened too.  Husbands think I want their wives.  I'm pro gay/lesbian all the way.  I believe you're born that way, though there are a select few who just love whichever person they love be it a man this year, a woman the next.  But I watched people grow up who were obviously gay/lesbian growing up and turned out, what do ya know gay/lesbian.  All at their own pace but it wasn't random.  I am pro gay/lesbian marriage and to be honest, I don't care who knows it.  I will not get into a debate with you about it, because you will try to make me see my error in my ways but to be honest, there isn't any.  I mean, when it comes to this topic.  There's plenty elsewhere.  How did I get onto this subject. Ohhhhh husbands.

So that's that husbands.  I am a friend.  Why does no one believe in that word anymore?  We became adults and suddenly there is no way you are not having sex with that person, ya'll hang out way too much.  Sure, if we were having sex we may hang out that much too but we aren't, and we are having fun without it.  People don't need sex to have fun.  Sure it is fun, but it doesn't go into every relationship.  People there are boundaries, and I for one, only cross the ones that say no hugs, I won't hit on you I will hug without warning.  So duck.

I guess this is just going to be a blog to vent about random crap.

I did start my new chemo this past week.  Guess I should catch you guys up on that.  I started on Tuesday.  Tuesday it didn't really do anything to me so that was cool.  Wednesday was a real bad day.  Real bad.  Thursday, not as bad. and Friday, better.  I get the medicine two weeks on, then one week off.  These first two doses she's giving me 20% less then what my dose will be.  Because of my reactions to medicines and all the medicine I have been on, there is a high possibility that my counts will just take a nosedive come the two week mark.  Doc just wants to see how my body is going to react before I get that in it's entirety.  I agreed with the plan.  The last med I started almost killed me so, yeah, let's start slow.

I've had really tired days, more then normal but also one really kick ass pumped up, electric charge kind of day.  Only natural that the next day I can barely walk two steps without falling over myself.  But it was a really fun pumped up day, and I got some stuff done which was cool.  That was Saturday.  Today is the tired crappy day.  But was a really good day otherwise.  The lady in front of me at church bought my breakfast, it really helped cuz groceries kind of killed me for the rest of the month.  I shouldn't have been buying it anyway.

Plus I've got to bring my dog to the vet this week.  I don't know how this is going to work.  The last of my money for the whole month going to the dog this week.  It scares me to think about it but God always works it out so I've chosen not to think about it.  You do what you've got to do for the ones you love.

And speaking of those I love...you guys...I'm sorry it took so long for me to write this time...I'll try better next time...sorry for the bi-polar ADHD rants, but that's the way you love them!

Monday, February 2, 2015

my brain is fu$%&*ed

I'm having a tough time with this blog.  A lot of times I sit down to write and I just go with it and can write and write.  But I sit here and sit here.  I have tons to say but can't find ways to say it,  I'm all over the place right now.  Internally.  I'm gonna try to verbalize what's going on inside me.


First thing is parenting.  Unfortunately we don't have the ability to make out children see themselves the way we see them and their beauty from the outside in.  But at the same time we can't make them want to become better people.  We can't make them want it.  And there is just nothing you can do.  You can't stand over them at all times and tell them what the right decision is, You can't make them do what they are supposed to do.  You can't make them listen to you.  It is frustrating, aggravating, and I get so pissed off sometimes.  I get sad sometimes.  So many freaking emotions and no where to put them.  No directions on how to get through it.  Panic attacks all around.  Smiles and laughter one minute, arguing and tears the next.  I guess this is what we call family.  Wouldn't trade it for the world, I just wish I was better at it.


Now for a completely different attitude and complete change of subject.  Another one of those things swirling around in my head trying to make sense of it all.  This is good though.  Good thoughts and feelings


Lately I have been lucky enough to have been able to spend time with many different people lately.  I participate in a group for young women diagnosed with breast cancer called SurviveDat.  If you remember I had to stop the Pink Princesses because I started getting sick and unable to make the meetings which made it impossible to run the meetings.  I tried asking a few different people about being someone who regularly makes the meetings so the meetings could still happen when I couldn't go but in the end, I couldn't find anyone and I had to stop the group.  In coincidence it was noticed that there had been a rise in young women with breast cancer and LSU and Mary Bird Perkins, and others (I really can't remember the details) applied for a grant to start something of the same nature and it happened!  Yay!  So it's something I get to participate in and not worry about it at all.  I just get to enjoy.  I've met some amazing women through this opportunity and I get to think of them as friends.  I attend meetings broken sometimes and leave whole again.  If any of you are in the category of young women diagnosed with breast cancer or know someone, contact me and I can give you the info.

In my last blog I told you about my girls night out to the LSU basketball game and I wanted to bring it up again because I had so much fun.  It was so good to get out and spend time with people I love.  Also my ten year cancerversary rocked and being surrounded by so many people I love was so special to me.  All of you that I couldn't imagine my life without you.  Just the memories make my heart swell with the love that I felt that day.

On my trip to Texas, Thursday, Friday, and Saturday, I stayed overnight on Thursday with my aunt and uncle in Kingwood, Texas.  I've told you about them before.  It's where we always stay when we have to go to M.D. Andersons.  This time being there felt so special. I tried to memorize the little details of them. The love those two people have for each other is unparalleled.  I mean my parents love each other but it's a different love and a different situation completely.  My uncle respects my aunt and I look at them and I see a team.  It's relationships like that, the team relationships that amaze me.  I've never experienced anything like it and getting to see it almost feels like an intrusion into their world.  I feel lucky go see it I guess you could say.  Because you don't see it too often.  What's weird is I can now count quite a few couples into that category.  Maybe it's just because we are getting older.  I know no couple is perfect and you don't know what goes on behind closed doors but I feel like I do.  It was great spending time, even though it was a little bit time, it still was nice.


I took a break from writing this blog for a day because it got harder to write.  My mind has been so off in it's own world right now but I'm getting through it.


On Friday, after my appointments, we met up with my brother, Casey, his wife, Yen, and their little man, Nolan.  We met up with them for dinner and we spent a nice time catching up.  This couple is another couple who I see as a team.  Maybe it's just on the outside but I've watched their relationship and it's grown to one that I adore.  I'm so proud of them, they just bought a house, in Cypress, Texas.  It is beautiful.  They let us stay over there Friday night.  It was fun playing with my nephew, he just turned a year in January.  I liked watching my mom playing with him.  She's so damn good with kids.  Saturday morning I got to play a little with Nolan, finally.  I swear we have so much family that during holidays I barely see the babies, everyone is gushing over them.  They are the cutest babies in the world, so I understand.  What I was trying to get at was that I loved spending time with my brother and his family, I felt so honored to be a part of his life.  It was only one night, definitely not enough time, but I enjoyed the time I was there.  Even though the whole time thoughts were swirling in my head about my M.D. Anderson's appointment, I still was able to enjoy myself.

Saturday afternoon was the best though.  My friend, Mrs. Kelly Bowman, brought me out to lunch.  After my agonizing over what to get (for some reason I find that to be the hardest thing in the whole world to do) we got to do some visiting.  I hadn't seen Kelly in such a long time.  I used to be able to drive out to see her but I have stopped driving so all the fun parts of my trips stopped.  It was major depressing going to Houston.  I knew that I could go nowhere.  Do nothing.  But this time she came to me!  Yay!  It was so good to visit and talk about what has happened in our lives since the last time we had seen each other.  The good, the bad, and the ugly.  It ended way too soon.  She had to go to her daughter's play and I had to leave to go back home.  So we reluctantly said goodbye but not before she gave me a super cool headband that she made for me and a little wallet too!  It's all so cute.  She also had bought me some dresses back when I decided to start wearing dresses everyday and they are so cute!  I have grown since she bought them but I know I will get back down to that size so I can't wait to wear them!  She also slipped some goodies into the wallet she gave me!  I miss being able to see her regularly.  There was a time when we lived together, us and all our kids.  She taught me alot about being a mom.  I learned so much from her.  It was back when Madisyn was one and she had a two and a four year old.  We both worked at Copelands Cheesecake Bistro, then at Outback.  Those were the days lol.  I do miss it.  All the teamwork parenting that went on there.  So it was sad to say goodbye.  All of our children are teenagers and in high school now.  It's crazy.

Then there's my mom.  You guys know how much I love my mom and all she does for me.  I won't go into it again right now.

Now I'm going to get into the actual trip to M.D. Anderson's.  What can I say? I just need to find the words.  Well, I already told you the tumors have grown, pretty much doubled in size, one mass so large they can't even measure it because it goes off of the visible area.  This one is a mass of many tumors, so big, with so much, they can't count the lymphnodes involved because it's so large.  Well I also told you guys about my new tumor.  It's so crazy.  I didn't see that coming.  I knew they were all growing, I mean I can feel some and feel them more and know they are bigger.  Every time I seemed to have new tumors I always just knew.  Call it a sixth sense, intuition, whatever but I pretty much always knew.  But this.  I never saw this coming.  It's palpable too.  But it's in my fake breast on the right hand side where I am also numb on the part of my arm the brushes it.  So without me ever noticing it grew.  It's so weird because I check my breasts.  And I still never found.it.  So that's has been messing with my head some.

The other part that's been messing with my head is the appointment with the doctor itself.  My new doctor is very sweet, knowledgeable, and personable.  All great qualities in a person, but what about her doctor abilities?  She impressed me so much.  The day I scheduled the appointment she called me to learn about me, learn about what's not in the file, and what had happened since the last time I was at M.D Andersons.  Then during my appointment with her she literally has a typed up summary of my history that she refers to many times during our engagement.  Amazing.  It's the part where we go over the results of the tests and the treatment choices that has been messing with me.  We agreed that the treatment I have been on is not working and I should stop it.  We are going to stop targeting the Her2 protein, and the estrogen factor because, well, they aren't working.  We've done many treatments in those areas and none of it worked.  So as we are talking treatment options and I'm realizing that I don't have many.  Because of my heart failure I am not qualified for clinical trials and many other treatment options.  That left us with not much.  She also spoke of discontinuing treatment and just treating symptoms.  This is what has been messing with me.  Am I really there?  I of course said no way, I'm not there yet!  But it has still been wiggling itself into my mind and taking over.  Am I really at a point where out of two options one is to do nothing?  It was the first time I'd ever been asked about that and so I find it echoing in my head.  But one thing is for sure.  If I ever wondered if it would just be better not being on medicine I know for damn sure that it's not and I'm going to keep going until I stop.  Stopping medicine feels like giving up for me.  My tumors would definitely be growing and I would just be doing nothing.  It makes no sense to me.  I need to try and try and try and try.  I can't jut stop.  Everyone has their own opinion about this, I know.  Some would choose the no treatment option, it's okay if you feel that way.  Me, I, just have a different opinion.  Everyone is entitled to their own.  So if you have been around me the past few days and I have been a little "off", this is why.  My brain is fu$%&*ed.

Thank for listening,

Shannon

Friday, January 30, 2015

the ups and downs of a moody, major depressive, bipolar daughter

Not much has been going on lately.  Besides sleeping on the most amazing bed ever, I haven't really been doing much.  But oddly enough I probably have done more in the last week then I did all month.  Last Saturday, a couple I'm friends with, had a birthday party for their two boys (their birthdays are both in January, less then a year apart).  I hadn't been able to catch up with them in years and being able to just be in their presence (there were 40-50 people there so actually spending time with them was hard to do) and see how much their family has grown made me feel so blessed.  I felt so blessed to just be able to call them my friends and it gave me a warm fuzzy feeling of family.  Spending time with my friend's family, his mother/father/brother/sister in law/and other friend's and family just always gives me a feeling of belonging and at my age it doesn't come around too often. 

 Even in my own family I feel like I'm right on the outside looking in.  I feel like I have to shout to be heard and even if I'm heard I'm not listened to and anything I say gets laughed off as unimportant, useless, and my opinions vetoed.  Don't get me wrong, I love my family to death.  I believe they love me in all their different ways.  What I'm saying isn't always the case, but it's the way I feel, so I'm writing about it, I'm sorry if I hurt anyone's feelings or anger anyone.  I feel not listened too, shut out, and like I don't have a voice and still at 35 it feels like in some situations I am not allowed to make my own decisions.  At this point in my life I do put my foot down but it just feels like it gets stepped on and broken.  More then ever in the past,  In a way I feel controlled.  I know a lot of it comes from a great place in their heart.  It comes from caring and loving me and worrying about me, not wanting me to get hurt, protecting me.  But I am 35 years old and I am old enough to make my own decisions.  I am of sound mind.  Even at my worst I've still been coherent.  Except when I've been in the hospital, sometimes I'm on a lot of drugs there so I'm knocked out most of the time and when I'm awake I make no sense.  But it's frustrating because sometimes I just want them to hear me and just listen.

But like I said, I have mad love for each and every one of them.  No matter good or bad.  I love all of my in-laws.  I do have a great sense of family around them as well, just different.  Plus I have my bad side that is hard to love I'm sure.  My mom gets the brunt of that because I'm always with her so she gets all the moods.  All the ups and downs of a moody, major depressive, bipolar daughter.  Make sure to keep her in your prayers lol.  She says she just ignores me, she's so used to my dad I guess lol.  But she's so good at dealing with me, I guess because she's my mother and has dealt with me forever.  What's funny is Madisyn doesn't even get that side of me.  I do get angry, just like every parent, when she doesn't listen but she get's the adult Shannon for the most part whereas my mom gets the Shannon who is whiny and pouty.  I'm crazy, ya'll.  I just am.  But I love it.

I also had the opportunity to go to the LSU basketball game last night for a girls night out.  I had so much fun and love the fact that I got to spend time with some old friends and meet a new one.  I haven't had a girls night in so long.  I just pray I get to continue to do things like that.  To get out the house and enjoy life.  I miss that.

Now, the reason I sat down to write.  I'm at M.D. Anderson's and I had my ultrasound this morning.  I don't know if you are new to my blog or if you are a avid reader but you may or may not remember that some of my tumors don't show up on the PET scan and only show up on the ultrasound.  When something odd if found on the ultrasound they then biopsy them to find out if they are cancerous.  So after two hours of them ultrasounding me, only on the right breast, underarm, and clavicle, chest, etc.  No kidding, two hours.  Their findings were significant growth in all the  tumors, one is just too big to measure and a brand new one.  It's my first new tumor in a real long time.  I'm confused on how to feel.  It reminds me of when they told me I needed a heart defibrillator only to tell me I'm not a candidate for one.  It's that same confusion of mixed emotions.  It's again in my reconstructed breast.  My mom asked me if I'm going to have a double masectomy again.  I laughed.  Go in for my second double masectomy.  That's funny no matter who you are.  I'm waiting for my doctor's appointment.  We had three and a half hours to kill in between appointments so we have been hanging out reading, sleeping, writing, you get the picture.  I'm so happy Casey Bridges gave me a mini Ipad for my birthday because I'm getting to watch hulu, I could do it on my phone but it's really a small screen.  

Anyway even with all the distractions I still can't help but be thinking, "what kind of medicine am I going to have to get on", "will it be bad?", "how is this going to change the way my life is now?", "what's going to happen?".  Plenty other questions are running through my head but that's a big enough example.  I was going to wait until later to blog but I wanted to work through these emotions first.  I felt like I would forget to say everything I wanted to say if I did that.  So you will probably be getting a second blog either today or tomorrow.

I also had crazy news yesterday about my vertigo.  I went through a whole bunch of tests trying to find the cause of the vertigo.  The findings came back inconclusive and that there is something wrong in my brain.  We can't thoroughly check my brain because I'm allergic to contrast they give you for the scan to really work.  It's probably just some wires crossed up there, I'm not going to stress too much about it.  Doc told me to mention it to my Doc today, see what she says.  So I'll do that.  Agh.  Everything is just bull.  I mean can I get a normal month?  Maybe one, two would be nice.  But really I'm just gonna deal.  One step in front of the other, one day at a time.

Until later,

Shannon 

Sunday, January 18, 2015

it's just heaven

One of the greatest days ever.  Okay an exaggeration.  I mean I didn't even leave the house today.  I mean I played Farm Heroes and took a nice nap.  Now that's where the best day ever comes in.  Just roll with it okay?


I guess it started with this.  Remember when I told you about my lifesaving device from the hospital, the BiPap machine?  This thing:
See!  This thing!

This is the base. The part with the bright screen.  I have a humidifier and oxygen attached to mine, you can see the oxygen cord, green, on the left and the humidifier smack dab in the middle of the picture.

Just for fun, this is my oxygen concentrator.


Anyway, back to what I was talking about.  The BiPAP machine helps me breathe at night.  It's not the same thing as a CPAP but it's similar.  It makes sure I keep breathing.  If I don't take a breath in a certain amount of time it makes me.  I got one of my own that I have to wear every night.  When being prescribed this I was told I need to sleep elevated and he tried to refer me to a hospital bed.  Well, this girl isn't ready for a hospital bed and I told him that.  I feel like once I get a hospital bed, that's it.  I would feel sick and feel sorry for myself, you know?  Maybe you don't and I'm not making sense but I refused the hospital bed and I've spent the last few months precariously placing pillows with the hopes they would keep me elevated.  Nope.  I always end up on one pillow, laying flat.

This has been frustrating me for months because on one hand I don't want the hospital bed, on the other I couldn't seem to get enough pillows to work.

Arrives is my 10 year Cancerversary.  I had an amazing time, and I know I've written about that before but just throwing that out there because it was that great.  Enter Desma and Kevin Dinkel.  Friends with the family since I was 13.  I sat with them, and a few other friends, explaining the situation.  I guess they had asked how I was doing or something, I'm not sure how it came up.  Cuz I know I had told Anna, who was sitting next to me about it, so it must have been geared toward them and the Ziegler's.

Well right then and there Dez's wheels start turning with ideas on how to get me a bed that elevates.  I had spoken with friends about doing a fundraiser or two but knew it was so much money that I was kind of defeated so I hadn't done it.  Well within a day or two Desma has a fundraiser up and running online.  Within a week or two they have collected close to the amount but they were still trying.  Enter there son, Chad.  He approaches a friend from church, Lee Burns, owner of Mattress Direct  (honestly don't know if it's all of the stores or just one store), and asks if he wants to get involved and the man decides to donate the bed.  DONATE!

Delivered to me this morning was a Serta adjustable bed and I think it's memory foam stuff.  I didn't get a receipt and I was so excited I covered it with the mattress pad and sheets so fast I didn't look for a tag lol.  But it feels like it!  I'm sitting in it now and it's just heaven.  I have it set to lounge which raises the legs too, circulation a big problem and that helps, a bonus!!  Plus if you remember, we had help with Christmas this year and one of them gave a new comforter set!  The comforter and the two matching pillow cases are brand new.  I absolutely love all of it.  This is how every person should feel always. Cuz I took a nap on this bed today and woke up feeling like I was floating on air.  None of the aching everywhere.  It was wonderful.
I should have taken a picture of it without the comforter and stuff but like I said I was SO EXCITED.


So from the fundraiser they had left over money.  Delivered to me yesterday by Mrs. Dez was a set of cream bamboo sheets (btw, the softest silkiest sheets in the world...that I have tried anyway), also two memory foam pillows, and a European down comforter!  She said they are still getting stuff, like curtains...I will tell you more on that when it happens.  My bed is pimping.  You have no idea.  It's one of those things where you don't know anyway you could ever thank enough.  But I want to try.

Thanks to Lee Burns and Mattress Direct for the donation of the bed.  You really have no idea the difference you are making in my life.  Thanks to Mrs. Desma and Mr. Kevin Dinkel for the idea for the fundraiser and holding it.  Thank you to Chad Dinkel for approaching Lee Burns on the subject.  And last but definitely not least is thank you to every single person and family who donated to the fundraiser.  You took your hard earned money and donated to help me and I don't know how to thank you.

On to business.  I may have mentioned in my last blog that I was waiting on scan results or I may not have, I don't remember.  That's how not stressed I get about those things now.  They will tell me what they will tell me, no changing it.  I don't worry about them.  God's in control so I don't need to stress on it.  I wish I could be that way about everything!  Tuesday was scan result day.  Here's my post from result day:
Scan results day! OMG are they going to tell me I have cancer!?

That's how I feel about this stuff now lol.  I did get the scan results and they didn't say anything absolutely horrible.  Like last time some areas were stable some grew but no new growths.  Praise God, dude.  Though it's the same one's growing so I don't know how that will work out eventually.  So it's really great that I'm going to M.D.Anderson's at the end of this month to see my new doctor.  Maybe there is a new treatment or clinical trial I can join.  Something that my cancer actually responds to.  It would be nice.  But this girl ain't complaining.  Nothing can ruin my mood.  With that I will say good night!
a pretty pic of me...just because :)

Monday, January 12, 2015

sometimes i need positive polly

So here goes.


It's been almost ten years since I was first diagnosed with cancer.  When I look back I see how so much has changed.  I could start on about how I look so different and how the different treatments bring me different looks.  For a while every year I had a different look and didn't recognize myself ever.  But I'm not going to get into that.  I have complained, chatted, whined, cried about it so many times it just isn't important to me anymore and it doesn't hold the weight that it used to.  Haha weight pun without trying.  I'm so good.  So enough about the subject I wasn't going to talk about.

At this point in my life I almost take everything as a joke.  Like, my internal medicine doctor could be a comedian talking only about my reactions to the things he tells me.  The last appointment with him was right before New Year's.  It was a scheduled checkup.  I hadn't been feel super great, but then again I never do.  He looked at me, asked me about my symptoms, then immediately sent me to get a chest X-ray, blood work, and a flu test.  All of which I thought was an over reaction of a very cautious and caring doctor.  Pneumonia.  Again.  Thank God for that very cautious, over reactive, caring doctor.  Boy, it really makes a difference when you have the right doctors.  This man will personally call me on the phone with test results on a Sunday if he feels it's important.  I will forever be in debt to Nichole Whetstone, who used to work there and referred me to him.  I'm not going to say the doctor's name just because I really haven't asked if he would mind, I don't know, I just feel weird about it. 

Oh back to humor and such.  So he's looking at the results and says pneumonia.  Let me just say this.  I had pneumonia twice this past summer which as a result landed me in the hospital and changed my life.  When I was better I received the pneumonia shot.  You know the shot so you don't get pneumonia.  So back to the doctor's office.  He told me about pneumonia and I immediately broke into an insane laughter.  It was the funniest thing to me.  I went in for a normal check up and was told I had pneumonia.  I mean, seriously, that was so funny to me.  Doc looked at me like I was crazy for a second then smiled with me.  We spoke about how because I did have the shot the symptoms weren't as bad as they should be and we caught it early he thought.  I don't think I stopped giggling until the next day.  Just kidding but it was for a while.  

I think back over the ten years and I wonder if I always would laugh in the doctors face as they were telling me bad news.  I remember, at first, I was Positive Polly, nodding and smiling and ready to kick some cancer ass.  Researching for hours, talking with anyone I knew in the medical field, asking them to explain stuff to me until I understood.  I reassured everyone that I was great and couldn't wait for life to get back to normal.  I was sad about the 40 lb weight gain in a month and the increase in feet size but I decided if that was all I had to complain about then I was okay.  I did have days when it would hit me and I would break but I had a lot of Positive Polly days.  And it did get back to normal, at least for a little while.  Well kind of normal.  I left my husband and moved in with my parents and shared a room with Madisyn for awhile.  

So I finished radiation in March and September 11th I got the news of more cancer.  I'm trying to remember how I reacted.  Oh I remember, I was pissed.  I wanted to break my phone (they called me with the news) and I think they let me leave work.  Since it was a temp job, and I needed time off for a couple surgeries, they let me go.  That pissed me off too.  So I was pretty angry then.  Alot happened between me and the doctors that I'm not getting into and it was a very unpleasant experience.  Yet I was Positive Polly with everyone, met some great people during treatment, one who led me to my oncologist that I have today.  Thank you Judy Davis.  I don't know if I'd still be here at all if it wasn't for you.  I know she doesn't read this but oh well lol.  

I could go on and on and on with all the different ways I have reacted to news given to me.  Mostly bad news.  Always was the good news that it hadn't spread outside into other organs.  There's Polly Positive jumping in.  But the longer it's been and the more that's happened and news after news after news I'm at this point where if someone asks me how I'm doing I kind of just shrug.  Make a face maybe.  Dramatic sigh.  Not so much with the GOOD!  And when the doctors give me bad news I laugh in their face apparently.  I know this isn't the first time I crazy laughed to him but the look he gave me was so classic.  Just a shocked, wtf face.  At times I wonder if I should be worried, that maybe I've crossed some line into a mentally crazy world.  Then I realized I like my crazy so I stop worrying.  

Well, I went to see the doctor about getting the defibrillator as suggested by my cardiologist because my heart still isn't getting any better.  It's been six months and my heart hasn't improved with the medicine I'm on.  Well my talk with the electrophysiologist (seriously the name of a profession.  I now have an electrophysiologist) brought about some interesting information.  My MediPort is a problem.  This is the device above my clavicle on the right side that is attached to a vein so they can give me meds though it i.e. chemo, antibiotics, vitamins, fluids, etc.  They can also be used to take blood but most of the time the clinics won't use them, plus mine is so picky that half the time there isn't any blood return.  Well apparently there is a huge risk involved with me having a MediPort and a defibrillator.  There is a high chance of infection.  I was kind of shocked.  So I asked him, how many times have you put a defibrillator into someone with cancer and a MediPort.  He says Never.  Not what I was expecting.  I was thinking, this must be a common problem and there must be different was around it.  Apparently it isn't.  He asked when would I be finished with treatment.  It kind of confused me and I stared at him like a deer in headlights.  So he asked in a different way, when will I be in remission and stopping treatment.  Still confused but kind of understanding, he must not have looked too hard at my chart.  Good enough to know some of my history but must have misunderstood something.  So I just say, it's been ten years.  Gave him a little shock as he did the math on how old I was when all this started and what I have been through, he completely looked floored but gave me another option that is different in the sense that it's placed on my side and it runs under my chest but with all the scar tissue and such that became another no. 

I left there like a dog with it's head between it's legs.  I couldn't decide which was worse.  Finding out that your heart is bad enough that your cardiologist wants you to get a defibrillator or finding out you can't get one.  I cried when my cardiologist suggested it.  I didn't want it to be real.  But going to the doctor and finding out it's not an option just kind of floored me.  I didn't really know what to feel.  I wasn't happy, I knew that.  I was so confused.  I was numb.  I'm still working through those feelings.  I feel like I'm in this dark, ugly bubble that just surrounds me everywhere I go.  When I see people it kind of melts away until they ask how I am but one thing is for sure, people help it.  The pneumonia definitely hasn't helped, although I'm feeling better now.  And then I'm cranky because I don't have long sleeve shirts to wear under dresses, well I also need different dresses and some warm leggings.  Every day when I wake up and it's cold I'm like ugh!  But that's just a whine, nothing really important.  But for real, it really has been one thing after the other but I'm working on myself because it could be worse, so much worse.  Sometimes I need Polly Positive.  

Some really great things have happened that I must tell you about because I've been all grim and dark so I want to show you it's not all bad!

My family threw a 10 year Cancerversary Party for me!  It was so great!  I got to see so many of you and enjoyed every minute of it.  The pneumonia didn't stop this girl.  I didn't know I had it then but it was so funny, I felt crappy so I brought a blanket with me.  Like a security blanket.  Sometimes if I'm bad off and I'm leaving chemo I take their blankets lol.  I refuse to give them back because I need a blankie.  This is new with cancer I swear.  I didn't grow up still needing a blankie.  Well not until I was 25.  I didn't end up needing my blankie though.  It stayed on the couch the whole time.  I didn't even really need my oxygen until the end.  I was able to run around talking to people without trailing that stupid thing behind me.  I think I named it once but I forget.  So anyway, it was seriously awesome and thanks to all of my family.  Mom, Dad, Cristin, James, Erin, Aaron, Kenny, Courtney, Kelly, Scott, Casey, and Yen, and Leigh Anne for your help with getting people's information to Cristin.  You all rock.  Casey and Yen I missed you guys!

There is also a major blessing in the middle of happening but I don't want to tell you about it until it happens.  EECK!  I can't wait!

I finally have been assigned to a new doctor at M.D. Anderson's!  It's been so long.  What a process.  But she personally called me today and I go at the end of the month and I can't wait for that either!

Our Christmas was amazing.  Thanks to everyone who made it magical for us.  In fact the tree is still up because I never want her to take it down lol.  That and we all have been sick, me, Madisyn, and Meg, the girl who did our Christmas tree.  But seriously I never want to take it down.

Well, I'm passing out so I'm going to say good night.  Thanks for everything, especially just being there.  Love you all.







Monday, December 15, 2014

i have cancer for christs sake

Hey, so if you are on my facebook you know what this blog is going to be about.  Well most of it anyway.  I never even know what I'm going to write until it's written.  But today is different.  I've been needing to write this all day and I'm finally sitting down and doing it.


I had a follow up appointment with my heart doctor today.  If you keep up with me you probably already know that some medicine I was on gave me heart failure.  Again.  This is the third time I've been in heart failure.  Each time what's been great, is that I take meds and my heart gets  better.  I visit my heart doctor regularly and he makes sure it stays better.  

I had a pretty bad spill in July.  My heart failure went down to the furthest it's ever been, but oddly enough it went right back to normal within a day or two.  Then within another day or two it went right back down.  Talk about a roller coaster ride.  Since then I have been taking my heart medication, increasing it when we decide to increase, etc.  

This time I went to my doctor for my standard check up.  Did the echocardiogram, saw the doctor, etc.  But this time the news was different.  My heart ejection fraction rate hasn't increased.  The ejection fraction rate (I included a link for those who may be new to that terminology) normally is 55-70 but even when I was at 45 we weren't too worried.  It has remained steady at 30 though.  Meaning it's not getting any better with the meds.  

For a little background for those who aren't familiar with my ride, the heart failure has caused my heart to be enlarged.  This has caused a whole series of events that none are good.  Because of the enlargement it can't pump like it's supposed to so the fluid in my lungs isn't getting pumped out like it's supposed to.  The hope was the medicine would increase the efr but it hasn't.

Which brings me to this part of the story.  Let me start of with I have been an emotional mess lately.  My doctor saunters into the room mid speak about my efr sounding like nothing is wrong.  Then he starts talking about pacemakers, defibrillators and so suddenly I'm like wait what?  Me and my emotional self sits and nods and listens.  He said since I wasn't progressing, implanting a defibrillator would be a form of a life saving device in case my heart does start deteriorating more.  To be honest, it was like they told me I had cancer again, only worse.  I didn't cry when I was told I had cancer.  I got mad.  But there I sat at the cardiologist office boo-hooing.

I can't explain why it affected me the way it did but, well, it did.  I think I had hoped I would be all good and we would carry on as usual.  I think my mind set was at, if I have a pacemaker then I'm really sick (Wtf? I mean I have cancer for Christ's sake).  My brain works in mysterious ways.  But my doctor went on to tell me if I didn't want to have it done we would roll with that as well.  It's my decision in the end.  Then of course, it is still up to the electrophysiologist who will look me over and let me know if it's physically possible for me to undergo, a minor surgery, but still a surgery.  The electrophysiologist has the final say on if I can have the defibrillator. Doesn't seem like it's a tough surgery at all and I have a good surgery history so unless oxygen is the problem I don't see why he or she would say no.

I'm feeling better then I was earlier. It was an emotionally jarring day. It's just something new, unexpected, unwanted, and overall it's been a frustrating year.  One of the toughest yet.  But hey I make ten years in 2015.  So if you are free December 27th and want to come celebrate that fact with me, message me on facebook, twitter, text, call, vox, bbm, whichever your pleasure. My family is throwing a party (was supposed to be a surprise, we aren't any good at those).  Hope to hear from you!

Sunday, December 14, 2014

i. am. not. married.

Hi! Well today was a good day.  For the most part.  It started off with a slight mental breakdown this morning that originated just because my parents were thirty minutes late picking me up from church.  It was embarrassing but it happened.  I want to thank my friend Chad for being there and knowing how to react in a situation where a girl just starts crying for no reason.  Sure they were late but that hardly warranted a mental break.  My oxygen went into the 80's and my pulse to 180.  Yep mental break.

So that was how it started.  Actually it started beautifully.  I went to church service and the reason I say beautifully is because it was absolutely beautiful. Some singing of a Christmas Carol and they did so well, it was so awesome.  And Pastor Mike had a great message today and it was just great all around.  Until I tried to leave lol.  God mental breaks suck.

It actually started last night when I reacted unusually insanely to something that wasn't that bad.  I mean, to me it was.  It felt like people were going over my head because I don't know what I'm doing or something.  I had made plans for Madisyn to be picked up by a friend to go to the Jones Creek Parade and she was going to hang out with them until I got there after church.  Plans made.  The end.  I am not married.  There is no one who can go over my head and change things...or is there.  My ex husband was watching our nieces for the night and he would have them today for the parade so he planned to bring them to the parade.  It gave them something to do, gave me time to see them, etc.  He runs into my friend at a party and completely changes the plans.  He is going to pick up Madisyn now and bring her to the parade.  I had already made the plans, had my own reasons for her to go with them.  She needs to spend time with people besides us.  She hides in her own shell and she needs to learn to be around other people.  So no one asks me what I think.  I am not married.  Let me say that again.  I am not married.  I am a single mother.  My ex is her dad but not legally and has no right to go above my head and change plans.  Like I said, I overreacted but I'm feeling better and I want control in my life.  I'm sick of people assuming I'm unable to make plans and decisions of my own regarding my daughter and going over my head and changing things.  No one has that power.  No one.  When I am sick and in the hospital or sick and unable to think or move, sure go over my head, sure realize that I'm making no sense and make executive decisions but don't while I am perfectly fine.  There is a line there.  Don't cross it.  I only blame my ex.  Not my friend. Just the way it goes.  She didn't know any better.  He should by now.

Now that my evilness is out let me tell you about my appointment with my lung doctor this week.  Nothing new in the "what's that all in my lung" department.  Still probably fluid related to my enlarged heart and the blood clot.  Normally your heart will work to get that blood clot taken care of and fluid out of your lungs but when your heart is in failure and enlarged it doesn't really work very well.  It's working, just not very well.  I did, however, find out that the thought is I will be on oxygen for most of my foreseeable life.  Fun times I tell ya.  Fun times.  Anyone want to go hiking?  It really pisses me off to think that in the years before this all I did was work work work.  I never went and did out doors stuff, sports, fun, any of that.  I worked and worked and worked.  And now it doesn't seem that I will be able to do that stuff.  Who knows maybe I will.  You never know.  Doctors don't know everything even though I feel I have the best lung doctor around.  GO HEAD DR. G!

I'm really excited because now I have an oxygen conserver.  Instead of a tank lasting four hours it can now last 19.  I went to a concert once and had to lug two tanks around because we weren't sure if I would run out or not.  No more of that!  I could drive to houston and back and back to Houston again with one tank.  Talk about awesome.

Besides my mental break, mood swings, and high anxiety, I feel like I have been doing well lol.  Doesn't sound that way does it.  Maybe I need to increase some meds.  Anyway at the times when I'm not being all around crazy I feel as though I'm doing good.  A lot better health wise anyway.  I was able to hang at the parade for a couple hours today and was fine!  It was nice to get out the house.

I've been busy so I haven't been doing too much reading.  I'm still reading The Golden Lily but today I read a short story, well it's a book but a small book.  It was called Prisoners at the Kitchen Table by Barbara Holland.  It's a childs book.  It was on our bookshelf and I hadn't read it, one of Madisyn's books, and I had a little time to spare so I picked it up.  What an emotionally jarring book!  The author wrote the book as a gift for her sons.  The book is awesome.  It could easily had been longer and made for teens but the way it was written was probably for elementary school.  The book is about these two classmates who are kidnapped.  It's told from the view of the little boy.  It shows his style of thinking, about how his views of adults and how he wants to be good and not upset the adults even after he's been kidnapped.  It was emotional for me at the end, but just so you know, no one dies.  It's more of a sweet emotion.  If you have a few minutes one day, read it, it's worth your time.

We discovered a new Christmas movie we like.  It's called Snow with Tom Cavanough and Ashley Williams.  We fell in love with it.  It's a one of our new movie's for Christmas.

Hope your Christmas holiday is rocking!