A View from the Valley

Not going to lie, I cried a few times this past week.  You might think “Why on earth were you crying?  Chemo is over!”  True, I have a lot to be hopeful about; but, I think that is it – hopeful.  I don’t want to be hopeful, I want to be certain.  But….it’s more than that too. 

Last week I had my last chemo treatment.  Apparently the drugs knew that this might be the last time they would get a hold of me so they stepped up their game and kicked my butt!  If that is truly the last time I have chemo then I don’t mind, but if I have to keep having chemo I am scared of what further treatment might do to my stamina. 

I don’t know about you, but if I’m going to have a tough time and potentially cry it happens at night.  I go to bed early because I simply don’t have the strength to stay awake, take care of Ellis, or talk to even my family.  That, in itself is hard.  Fortunately I don’t feel too bad about Ellis because Todd takes great care of him and both of our families and friends help out a lot.  So there I am lying in bed, feeling tired and slightly sick and I start to think.  Thinking is what gets me in trouble.  I think about how I feel and wonder what it might be like if I have to keep having chemo.  Then I think about the other alternative – surgery.  It’s a catch 22 – chemo or surgery.  Yes, surgery is the happier alternative because it means that the chemo has worked, but think about it for a minute.  Surgery isn’t fun either.  The effects of surgery do wear off and the cancer would be out of my body, but it also takes a lot out of a person.  That is the point that wares me down.  I don’t want to have chemo but I don’t want to have surgery (possibly multiple) either!  All of it scares me.  At the end of the day, at my lowest point, I’m a scared little girl. 

Why can’t things be easy?  That is the question I ask myself and yell to God from time to time.  I’m tired.  I’m tired of being tired.  I’m tired of having a hard road ahead of me.  I’m tired of having to be strong because it’s always there in the back of my mind – what if it returns again?  It did already.  What if this is just my life now? 

That honestly is where I go.  That is my low point, and I don’t feel bad about it.  To be honest I think I deserve to wallow in self pity just a little. We all do from time to time.

I think about Todd, about Ellis, about my friends and family and that gives me some strength to keep going.  But, do you know what really pulls me out of my funk?  Anger.  Anger that I  would let the cancer win, take over my life, and crush my joy.  Nope.  Not gonna happen.  That is when I say to myself “surrender is not a option”.  Cancer may come after me; let’s just put it out there, cancer may defeat me but one thing I will never do is surrender.

That is one thing that cancer has given me – an overwhelming desire to fight.  I think cancer does that for a lot of people.  It shows us how strong we are, how strong we can be. 

So now I wait.  I have to wait to learn if I can have surgery or if I need more chemo.  Waiting sucks, but if I have to wait that’s what I’ll do. 

Thanks for listening.

The Picture of Cancer

What does cancer really look like….?  I mean, think about it.  What do you think of when you think of a person who has cancer?  Visible hair loss, sallow complexion, oxygen tanks, completely drained demeanor….?  I think that society as a whole thinks of cancer patients that we see depicted on television.  But do real people ever look like that?

I’ve had many people tell me that I don’t look like I have cancer.  On one side I’m glad.  I don’t want to look like I have a tumor inside me.  On the other hand I’m disappointed.  Now, don’t get me wrong, I’m not disappointed that I don’t look sick.  I’m disappointed because cancer is something very real to me.  It is something that I live with and deal with every day at this point.  To be told that I don’t look like I have cancer sometimes makes me feel like what I’m going through doesn’t seem that serious to others.  Don’t get me wrong.  I don’t want someone to walk up to me and say “Girl, you look like crap.  You must have a huge tumor!”  I know people mean well, I’m just sharing how my mind twists things from time to time.  Don’t we all have certain things that we interpret differently than what is meant by the speaker?  Last time I checked we are all human, so the answer is an emphatic “Yes”.

I am always amazed when I go to chemo.  I’m amazed at the sheer amount of people at the cancer center.  There are always more than I would expect.  I am constantly amazed at how many people experience ca ncer at one point in their lives. 

I am a people watcher, so I like to check out the people I’m sharing this experience with.  I would say there is an even 50/50 split of people who have hair and people who don’t.  Some are guys and some are women.  Not all chemo patients lose their hair.  Most people at chemo look good.  They are dressed nice and I can’t distinguish which person has cancer and which person is their friend there for moral support.  Some people walk normally when they are called while others meander slowly to the nurses.  Some people do have oxygen, but most don’t.  I find that most chemo patients are older, but there are some younger ones too (I consider myself one of the younger ones!).  Even being a cancer patient myself I can’t look at a person and know if they have cancer or what type they have. 

That is the main reason that I enjoy chemo from time to time – the people and their stories.  I enjoy getting to know others who are going through chemo with me.  I feel like they are my comrades in arms.  We are all fighting the same fight regardless of what type of cancer or what treatment we are receiving. 

The funny thing about receiving chemo is that it is perfectly normal to say “What type of cancer do you have?”  Normally that would probably be offensive to be so direct, but we all know that we are there for chemo or sometimes there are people there for blood disorders.  I tend to be quite chatty at chemo (at least until the drugs hit me) – shocking, I know.  The last time I was at chemo there was a cute younger girl sitting next to me.  She was there with her mother who was receiving treatment.  I complimented her boots and she directly asked me “the question” – “What type of cancer do you have?”  I kind of smiled and told her I had colon cancer.  I don’t mind being asked that question because they acknowledge the fact that I do have cancer and am going through something I can’t control.  I’ve made a lot of friends going through chemo.  I don’t know their names but we always chat and check in to see how each one of us is doing.  It’s nice to talk to someone who is sharing a similar experience, even if it’s just their friend there for moral support, because they understand how what we are going through is hard but it doesn’t change the fact that we are all still people doing life together.

I hope that as you read this you aren’t offended.  I do like to know that others think I still look “normal”, but sometimes I need people to see that cancer isn’t always so black and white.  People by nature hide a lot of things.  We don’t want to seem out of the norm even if we never feel normal on the inside.  And, this applies to any type of sickness, not just cancer.  Consider the fact that more people than even I realize have cancer and not everyone who has cancer fits into the Hollywood stereotype of what a cancer patient looks like.  We all have problems regardless if we show them to others or not. 

 

Chemo, No Chemo, Chemo, No Chemo....

I know, I know…it’s been a while since I’ve written anything.  I promise I’m not falling off the wagon with my blogging.  It’s been a rough 3 weeks for me. 

Chemo, as always, isn’t a pleasant experience and only continues to build up.  Then this past week I managed to get an infection.  Fun times at the Bamberg home.

And to put the icing on the cake, on the day that was supposed to be my last chemo treatment I’m not able to receive chemo because of the infection.  One of my chemo meds (Avastin) inhibits my ability to heal so the RN felt it was best to hold off on treatment in order to allow my body to heal.  But, wait!  I’m not finished.  After having to postpone my final treatment until later in the week I then had to miss chemo for the second time in one week.  One word – insurance.  You never want to be without it (especially in my situation) but it sure can be a pain in the butt sometimes.  I went for my final treatment the second time on Wednesday and wasn’t able to receive treatment because I have a new insurance company and they wanted to review and approve my chemo drugs.  Let’s just say I was not happy.

For weeks I’ve planned out my last chemo treatment.  New Year’s Eve.  Party at Georgia Cancer!  Whoo hoo!  I decided that if I was going to spend New Year’s Eve having chemo I was going to make the most of it.  I picked out my clothes a week in advance.  A nice black cotton dress and sweater, my sparkly gold glitter shoes, and gold accents.  Todd and I even went to Target and got me a new black hat to go with everything (ponytails with headbands are no longer an option – Todd actually said I looked like Smeagol from Lord of the Rings – sad, but true!).  I was going to look adorable!  I even picked up a small 4 pack of New Year tiaras, the small champagne bottles and a Simply Orange just for me – mimosa’s – yum!  Chemo was going to be awesome!  Then my bubble was burst for the first time that week.

On Wednesday I received a call from my oncologist to make sure I was feeling alright and healing well from my infection.  My colorectal surgeon had “fixed” me, so I was feeling MUCH better I was just still on my antibiotics.  My oncologist said that as long as I was feeling good then he saw no reason to hold off on my chemo and I could come in that day.  Once again I had already planned my outfit.  It was more casual/cute – jeans, tank top with an off the shoulder top for a pop of color, cute and comfy shoes, and another hat.  I quickly got all my stuff together in preparation to sit around for 5 hours.  My mom made me a PB&J sandwich and I packed snacks and a Coke.  I sat around for about an hour and a half waiting to see if my insurance company would respond quickly.  Unfortunately it became too late in the day for me to be able to receive chemo anymore and we decided to put off my treatment for the second time that week.  SO upset! – venting moment – I understand that insurance companies need to approve things but I think that in the case of chemo or something serious they should just approve it and figure out the logistics later.  During a chemo week Todd and I have to figure out childcare and rides to and from treatment; not to mention the mental toll it takes on someone psyching themselves up to physically make themselves sick.  To have that put off because of approvals is a little silly. – vent over.

So, now I’m going back to try my hand at my final chemo once again this coming Monday.  My infection has been pronounced minimal and my insurance has approved my treatment so I am good to go! (I hope…)

 

My chemo explained

Chemo week is in full swing.  I meant to blog yesterday but after sitting for my infusion all day Todd assured me that all of you would forgive me for missing a day.

I don’t remember if I ever explained to all of you my current chemo regime.  I am doing the FOLFIRI plus Avastin colon cancer regime.  My first round of chemo back in 2011 I did FOLFOX.  Basically both FOLFOX and FOLFIRI lead to similar results.  The reason I am doing FOLFIRI this time is because I’ve already done FOLFOX and my cancer has returned, so hopefully my cancer cells will respond better to the FOLFIRI regime.  If you’re interested to learn a little more about the differences in the two this link is a short description about the two therapies - http://news.cancerconnect.com/chemotherapy-regimens-folfox-and-folfiri-produce-similar-survival-in-advanced-colorectal-cancer/

In addition to FOLFIRI I also receive an antibody call Avastin.  With my type of tumor I have the option to take 2 different types of antibodies.  I can either take Avastin or Eurbitux.  When my oncologist went over my options he mentioned that Eurbitux almost always causes facial rashes.  Since I had the option to do either, my vanity won out and I chose the Avastin.  It’s pretty cool how these antibodies work along with the chemo drugs.  If you’d like to learn more about how the Avastin works check out this link - http://www.avastin.com/patient/crc/about/index.html

So, every other Monday I go in and have my blood taken and urine sample, quick doctor visit, and then start my day of chemo.  I usually get to Georgia Cancer around 8:45 and don’t leave until 4:00 or a little earlier.  It’s not a bad day because everyone is very nice.  They have a “fancy” coffee maker which I use to drink hot chocolate – yum!  They hook me up with a warm blanket and pillow and I relax in my recliner.  Though the person sitting beside me doesn’t know it, they are about to become my talking buddy for a while. 

We start out with my premeds which are just some saline and 3 different antinausea meds.  We then start my chemo drugs.  In the beginning I believed I would be able to work, type, or read during my treatment.  I quickly learned that no matter how hard I fight it I get very tired.  I hang in there through lunch time and then I pull out my eye mask and take a nice snooze.  Sleeping around others is a little weird, but most of them are doing the exact same thing.  I’ve never been much of a napper and I’ve always been grouchy when I wake up so when I wake up at the cancer center I try to be really quiet and not talk to anyone for at least 10 – 15 minutes.

When my chemo drugs are done I usually am starting to feel nauseous again.  I sometimes ask for a little Ativan to make through the ride home – good ol’ vitamin A!  After that it is time for my push of 5-FU.  The 5­-FU is what I take home with my pump.  They give me a push first to get me started and then disconnect my leads from the hanging chemo drugs and hook it up to a pump of the 5-FU that slowly pumps the final chemo drug through my port for 2 more days.  I have to receive the 5-FU slower because it can cause mouth sores if given too quickly.  The 5-FU is the stuff that I really HATE!

So, that is where I am now.  I had my infusion yesterday and right now I’m just tired and feeling nauseous and not hungry.  The 5-FU is pumping through my body and I am slowly starting to feel the side effects from that.  Just like the last time I keep my pump in a little messenatger bag that goes everywhere with me.  It makes this little “swoosh” noise each   time it pumps the drugs through my lead.  In the beginning the “swoosh” is kind of like a nice white noise but by the end of day 1 and definitely day 2 that “swoosh” is not nice white noise to me.  It is more like a “slurp!” draining all the life out of me.  The 5-FU really affects my throat.  (Thus the not wanting to eat and nausea)

Have you heard the saying “no pain, no gain”?  That is my life.  I’m not in physical pain but it’s not comfortable and I’m completely drained – so maybe for me it should be “no drain, go gain”.  Not gonna lie, I am dreading tonight and tomorrow but I know that I’m doing this for a reason and hopefully this regime is working for me.

I mentioned earlier in the blog that because of my tumor type I was able to choose between 2 different antibodies.  After my scan in January if surgery is not an option for me the other antibody type would be an option – It wouldn’t be a glamorous one, but if it works, it works.

Don’t worry about me.   I may not feel 100% but my personality is still 100%.  I may not be hungry or want to talk too much but I’m happy.  I’m still the same Shea.  That is one thing that cancer will never change!

Ned and Fred are jerks!

Ned and Fred are jerks!

When I first met with my oncologist to talk about my chemo treatment we discussed side effects.  One of the side effects of chemo is hair loss.  With colon cancer you generally don’t lose all your hair.  I was told that my hair would just thin like it did the time before. 

The first time I had chemo my hair thinned but no one other than Todd, Carie (my hairstylist), and I could tell.  I have big hair so it works well in my favor. 

Hair falling out is probably one of the hardest things that I’ve gone through mentally.  I think the reason why it gets to me so much is because I already feel bad on the inside and hair loss is something on the outside that shows what the chemo drugs are doing to your body inside.  There are a lot of ways that I can hide how I feel on the inside by dressing up, putting on makeup, and doing my hair.  At a glance no one would know that anything was going on with me.  But, hair loss is visible. 

Next time your washing your hair imagine this.  You shampoo your hair and as you go to rinse you pull your hand back and there is a large clump of hair in your hand.  It isn’t just a normal small amount of hair that usually sheds but it is like you touch your hair and it just comes loose from its end.  It doesn’t end there.  It isn’t just one handful because your hair is still full of shampoo suds.  It happens each time you run your hands through your hair to rinse the suds out.  Wait!  We’re not finished.  As you towel dry your hair you notice another clump that you could build a small Barbie wig with.  Then you brush your hair.  Aaah!  Why? Why must you brush your hair?  Those spots that you though were tangles to be brushed out aren’t tangles at all.  They are clumps of hair that are just waiting to be freed from the remaining strands that are still holding on.  All you can do is stare at the pile of hair that is accumulating in your bathroom trashcan and wonder how many more strands you have left and how well attached they are to your scalp.  Oh!  And on top of that, it’s not your gray hairs that fall out.  No!  Those stubborn little boogers have an unyielding will to live because they never fall out.  When it happened to me this time all I could do was stare at the hair in my hand, towel, brush, and trash can, sigh, and then let it go.  What can you do? 

The time before I only had 1 bad bald spot on the left side of my head.  I named it Fred.  Why not?!  Fred was not my favorite but I could tolerate him.  This time Fred returned but he brought his friend Ned.  Now Fred is a jerk, but (pardon me) Ned is an asshole!  Ned sits right atop my head and he apparently loves the holidays because he has grown fat with time.  And, like any unwanted guest, he invited friends.  I now have Stanley who is a moderate sized jerk who hangs out on the right side of my head and mirrors Fred and Lucas who is this nice thin spot right along my hair line at the back of my head.  Jerks!

My hair has thinned a lot more this time than it did the time before.  My oncologist thinks that it may have something to do with my pregnancy.  If you were to look at me you would be able to tell that I’ve lost a lot of hair.  I wear a lot of hats and can only wear my hair in a ponytail with a headband to pull the hair that is left over my bald spots.  It’s not a perfect system but I make it work.

I realize there are lots of men and women who lose all their hair.  I should be thankful for the hair I have.  But, in a way I almost feel like my situation is worse because I haven’t lost enough to shave my head and wear a wig but I lost enough for it to be obvious.  See!  Ned and Fred are jerks!

At the end of the day hair doesn’t really matter as long as I’m getting healthy.  I’d gladly live the rest of my life with Ned, Fred, Stanley, and Lucas to come out cancer free and healthy in the end.  Hair, like money, is just a thing.  It’s nice to have but you don’t need it to be happy.

Happy due date Ellis!

Happy due date to Ellis!  It’s so weird to think that his due date was 12/12/12 but he was born on 9/21/12!  I was a little bummed that I wouldn’t be having him today because I just thought the date was cool.  I can’t even imagine having him now.  He would have been HUGE!

I’ve never been a baby person.  I honestly wondered if I would even have kids for a while.  After becoming pregnant and having Ellis I now have a great respect for mothers.  First off, pregnant women have to deal with morning sickness, random weird pregnancy stuff, and weight gain (and to think they intentionally do this to themselves!)  Then after delivery they go insane for a few weeks/months as the hormones level out (Believe me, I KNEW I was crazy and there was nothing I could do to stop it).  On top of that, they (hopefully along with the dads) are subjected to lack of sleep, possible insanity due to crying, and being thrown up on.  I had no clue.

Let me take some time to share a little bit about my little man.  Most of you know that Ellis was a planned preemie.  It’s funny because the NICU is generally not a part of someone’s birth plan, but for Todd and me it was.  After finding out that my cancer had returned for the 3^rd time I consulted with my doctors and we decided that it would be best if I went ahead and had Ellis early.  I went in and had my steroid shots to boost Ellis’s lung development and the following week at only 28 weeks I had Ellis.

Ellis’s birth was not what I would consider a “normal” delivery.  I actually had him in an OR in the hospital part of Northside instead of a delivery room in the Women’s Center.  My OB had to get special permission for Todd to be in the room.  It was interesting because the delivery had people from labor and delivery, surgical staff, and people from the NICU to take care of Ellis.  I honestly have never seen so many people in an OR before. My guesstimate would be 30 people.  The c-section went well and nothing needed to be done regarding my tumors.  Ellis apparently “squeeked” when he was born, but I couldn’t hear anything because Todd was doing his “almost pass out” performance.  Now, this is just me, but do you also find it odd that I had to have 2 IV’s, have plenty of blood drawn, and have an epidural put in and Todd was the one who almost passed out?!  Come on!  Man up, babe!

Ellis stayed in the NICU for exactly 2 months.  Northside NICU was awesome and all the nurses, doctors, and hospital staff were impeccable.  There were a lot of ups and downs but we met a lot of great people along the way.  The day Ellis was released I took him and ran!  I actually neglected to take pictures because I was so excited to liberate him from the hospital.  I was so glad to have my little man coming home and my daily drive to Northside ending.

Now that Ellis is home I’ve learned a lot about him and men in general.

1. Men, or at least Bamberg men are ingrained to put their hands down their pants.  I have actually diapered Ellis’s hand!  It’s not going anywhere, why constantly check that it hasn’t moved?!

2. There is something about changing a diaper that really ticks Ellis off.  I don’t know how he does it since he doesn’t have a butt but he squeezes those cheeks together so tight there are probably things hiding down there that have never seen the light of day!

3. Men are addicted to food from birth.  He actually gets mad at himself that he isn’t eating fast enough during his feeding.

4. Men love to have their head rubbed from birth.  Ellis hates baths.  I swear he would rather stay smelly than take a bath.  He kicks and screams.  But, as soon as the warm water and soap hit his head he instantly relaxes.  My mother-in-law actually asked if he was ok because he went from screaming to totally relaxed in 2 seconds.

There are so many things that I have learned to appreciate after becoming pregnant.  I love having a baby but I swear there are many times when Ellis is crying that I think, “I should be the one crying not you!”  Babies are cute and cuddly but they are a lot of work.  I would like to just say to all the moms out there – I had no clue.  All of you are awesome and should have gold medals!

Happy due date Ellis!  You’ve changed my life, but I wouldn’t change that for the world!

No more hiding

Hello all!  I know it’s been a long time since I’ve checked in or written anything.  Let’s call it tiredness and denial.  Going back and forth to the NICU and going through chemo wears a girl out and then when a little munchkin comes home that really wears a girl out.  There is also the fact that I just haven’t always wanted to talk about what’s going on – that’s the denial part.  I know I have cancer.  I know I’m going through chemo.  But, actually talking about it makes it some much more real.  And, maybe, just maybe, I’m scared and don’t want to admit it…..weirder things have happened.

Ok, so here’s the deal.  I talk to God in the shower a lot.  Lately my chats have been kind of quiet but today something really struck me.  I have cancer again.  It is what is it is.  I’m going through chemo but no matter how hard I’d like to believe it’s not real, it is.  I can either hide in my tiredness and denial or I can share my story.

There are so many nights that I lie in bed and wish that I was normal.  (I know, so not me, right?)  But, I’m tired of being the one who has odd things happen and I’m tired of being the one who has to be strong.  I feel like I’ve already been there and I’ve paid my dues.  Now is my time to have something simple.  All I wanted out of life was to continue cancer free, have a baby, work, and have some laughs.  Why can’t life be that simple? 

You know, I’ve never been one to accept change quickly.  I’ve improved my adaptability over the years but it’s still not easy all the time.  So, while I was having my talk with God in the shower I came to the realization that this is what He wants me to go through.  And, one thing I’ve learned is that God has a plan for our lives and though we may not like it we can either choose to get on board or hide from it. 

Now I know all of this is my ranting and my beliefs but this is my blog, so I can say whatever I want and you just have to deal with it!  But, I’ve basically said all of that to say this – I’ve been hiding from my life course, trying to deny it or wish it away.  I have cancer again for a reason.  I don’t know what that is, but the least I can do is share my experiences with others.

If I’m going to make this commitment to start sharing more I am going to need you to make a commitment too.  Here are my ground rules:

-          Do not feel sorry for me.  I’ve never wanted anyone’s pity.

-          Realize that sometimes I’m going to be mad or sad and that is ok.  Sometimes people don’t need cheering up, sometimes people need someone to get down in that low spot with them and say “yeah…that really sucks”.

Think you can handle it? 

Alright, let’s get started.  I’m just going to jump right in to the nitty gritty.

First, let’s go over what all is going on.  Here are the highlights:

-          I was diagnosed with colon cancer in December 2010.  Had a colon resection, chemo, batta bing batta boom I was cured. 

-          After my CT scan in December 2011 I was cleared to try to have a baby and after some genetic testing to make sure my cancer was not inherited I was cleared by my OB as well.

-          I got pregnant in March 2012 – Yay!

-          In my first trimester my perinatal specialist found a tumor on my ovary while doing a routine ultrasound.

-          I had surgery in June 2012 to remove the tumor, had 3 MRI’s to make sure I didn’t have cancer anywhere else, and was pronounced good.  Yay!

-          At the end of my second trimester I had a little bleeding, I went to my OB and we discovered I then had a tumor in my cervix. 

-          I had another MRI that showed it was not only in my cervix, but a small part was in my liver as well.  The places were inoperable at the time.

-          I had steroid shots to help boost Ellis’s lung development and had a c-section on September 21, 2012 at 28 weeks.

-          I had a PET scan in October and started chemo.

-          Ellis grew and developed and was released from the NICU on November 21, 2012.

That is my story in a nutshell.  What I’m facing now is 2 more rounds of chemo (I’ve already done 4) and then I will have another PET scan to see if my tumors have shrunk to an operable size and area. 

Let’s talk about this….  Everything that I’m doing hinges on this scan I’ll have in January.  On one side I could be having some huge surgery – a hysterectomy and a part of my liver removed.  On the other side I could be reevaluating my chemo regime and starting more treatments knowing that my tumors are still alive and kickin’.

There are days when I am convinced that my body is conspiring against me and it’s some crazy battle that I just can’t win.  There are other days were I am full of optimism that I’m fine and the cancer will be gone or they will get it out of me and I will be healed and have a normal life.

I’m not going to lie.  I’m scared.  This time is so different because it was supposed to be gone and it came back and because of Ellis – it’s a game changer.  I know that recurrent cancer is much more serious and I stand a higher chance that things might not work simply because I’ve already done this once and it still came back.  What if it doesn’t go away this time?  What if this is a fight I’m not supposed to win?  What if I don’t get to see Ellis graduate from high school?  I know these aren’t good things to dwell on but they are things that run through my mind on occasion.  Wouldn’t they you?

That is where I am.  It’s all out there.  I’m scared, tired, and occasionally in denial but I’m determined to see this through.  I can’t always be down because that is no way to live.  No matter what comes my way I have to just keep on pushing.  That’s what I fully intend to do.  I’m going to be me – happy, sad, or mad, I’ve got to keep going because giving up is not an option.