August 1st Scan Results

Hello all.  I just wanted to update and let everyone know that the CT scans came back good!  I had a couple of enlarged lymph nodes but they have been that way for a while and have shown no changes (I have had a couple of PET Scans and a biopsy of the one node to verify that nothing crazy is happening).  Thanks for all the support and prayers!  Definitely appreciated!

SCAN-XIETY

The thought enters my mind and I quickly make it exit.  It’s easy to do that when it’s so far off.  “Why think about it now?” I say to myself.  “That’s silly.  I’ll think about it when it gets closer to time.”  And before I know it, it’s time.  I really hate that gut feeling about a week out, that tiny little twinge of nerves that starts the whole process.  That realization of, “Ugh, it’s already that time again!”  Whoever said time flies wasn’t joking.  And now that I’m a mom it seems like it flies even more as my son grows.  Time REALLY does fly!  I finish one and we’re on to the next!  What ever could I be talking about?  The dreaded scans.  And the dreaded scan-xiety!!!!

I HATE scans.  It’s not that they hurt and it’s not like they are a bother.  They really don’t and they really aren’t.  They are just an additional reminder.  And I don’t like them.  At all. 

I usually get really nervous before scans because they give me an answer and, again, I get really anxious that it may be an answer I don’t want.  Trust me, it is very reassuring when my scans come back clear.  But, they are also so extremely nerve-racking when they come back “questionable”.  I am not the most patient person in the world and waiting for the call from the doctor’s office is sometimes excruciating!  I don’t like being nervous, being anxious, wondering.  That is one of those times where I just want to turn off all feeling.  I want to feel…..nothing.

But, unfortunately, you can’t just turn off emotions like that (at least without the aid of some kind of illegal drug, of which I will not be participating J ).  So, I will feel.  I will have that pit in my stomach.  I will curl into my usual ball of tears the night before, as I drink from the nasty contrast “mixed-berry smoothie”.  Let me tell you guys something, there is nothing berry-ish about this.  It is so disgusting.  They give me two bottles of it.  I basically drink half of one without breathing, take a break, and then gulp the other half.  The next morning I drink half of the other one and then, by the grace of the radiology department at the hospital, they only make me take one big swig instead of finishing the rest.  Then we scan.

My scans consist of CT’s with contrast of the neck, chest, abdomen, and pelvis.  They don’t last long.  Maybe ten to fifteen minutes?  I have had three PET scans, I believe.  Those last much longer but, fortunately, I don’t have to do those often.  Those are only after those “questionable” results.  So, let’s hope for no PET scans for the rest of….my life.  J  Anyways, the scans are done every four months now.  The first two years they were every three.  We’ve moved to four, so that’s good.  And I really only have two years left of this, so that’s not that bad. 

The scan-xiety is something that I am learning to cope with, albeit probably not so well as of yet.  I am a work in progress.  I think my first questionable scan ruined me in this regard.  I wasn’t expecting any question so to hear that there may or may not be something sent me into a frenzy.  Obviously, everything turned out fine and always has, but that initial scare has made each and every scan since a dreaded thing.

My therapist has told me that this whole experience and my feelings now may suggest “Post Traumatic Stress Disorder”.  For the record, I have not been clinically diagnosed with this as of yet, but it totally makes sense.  The whole diagnosis, with the timing of it all (just married and pregnant) was SOOOOOOOOOOOOO traumatizing for me.  And the feelings that have resulted do fall in line with it.  But that is why I am getting help for this.  I want to get better.  I need to get better.  I HAVE to get better.

So, here we are.  My next scan is this Wednesday, August 1^st.  Because the last one was questionable and even though the PET and biopsy were okay, my doctor still wanted me to get another one within about two months.  Wednesday is the day.  I do solicit your prayers.  I take comfort in knowing that this is so soon after the last one and everything turned out okay with that one.  So, in order not to jinx myself, I will stop there, but you all know what I mean.  Thursday will be the nerve-racking day as I usually find out results the day after.  So please pray for good results and calm nerves!  I will keep you updated!

Dealing with GUILT

Well, now that everyone has the background on my whole cancer diagnosis, I want to get to the real point of this blog.  How do you cope with life after cancer?  For me, this comes and goes in waves.  I will start out by saying that in one way or another, cancer is on my mind everyday.  It doesn’t necessarily have to be in a bad way or a good way.  I just think that once you’ve had a cancer diagnosis, it is something that IS going to be in your thoughts on a daily basis.  It is not a dwelling on it.  It is not a “feel bad for me” kind of thing (as, at least in my case, almost all of this cancer thought is just that….thoughts that I have and don’t verbalize.)  It is just there.  It is such a huge, life-altering event that it changes your way of thinking and way of living on so many levels.

I have really, really good days where I think to myself “you can really make a difference.”  I guess, even on my bad days, I think I can make a difference with my story.  If it’s just convincing someone to not go to the tanning bed, or to wear sunscreen, or to just educate people, I can make a difference.  This makes me happy. 

I wish I could say that everyday is an “awakening” for me.  Yes, cancer makes you value things on such a higher level.  You appreciate your health so much more.  You appreciate your friends and family so much more.  You appreciate your TIME so much more.  And you really do.  But, I would be lying if I said post-cancer life was all “rainbows and butterflies”.  For me (and I am willing to bet, many of you) it is not.

I had a period of time where I did really, really well with this post-cancer life.  My scans were not as distressing.  I was moving along really well.  And then I experienced my first “questionable” scan.  I didn’t know how to react.  I was just surprised.  I wasn’t prepared.  And I have learned on this journey that you always have to TRY to be prepared.  The saying goes, “prepare for the worst and hope for the best.”  Well, that’s kind of true.  I have had two or three questionable scans at this point.  And they haven’t really gotten any easier.  The idea of ever having cancer again freaks me out to no end.  I have always said that physically I can do anything.  I made it through pregnancy with cancer.  I made it through a year of treatments with a baby (and a lot of help).  I can handle the cancer drugs, the sickness, the aching.  I can handle it.  But mentally and emotionally, that’s a whole other story.

I struggle some with guilt in regards to the diagnosis itself.  Melanoma.  Stage 3.  Skin cancer.  Could I have prevented all of this from happening?  If I had known then, when I was lying out and going to the tanning bed and NEVER using sunscreen, if I had known then….would I have changed my behavior?  Can I use the young excuse?  The fact is I knew what all of this could bring.  I knew that skin cancer was a possibility.  Of course I did.  I am many things, but stupid is not one of them.  I could have made changes and I could have been more concerned with other things rather than whether I was tan enough.  So, I can say at this point, if I knew all of the mental and emotional anguish I would endure, as well as that of my family, I would have done it differently.  But, as they say, hindsight is 20/20 and I can’t change it now.  It’s a hard pill for me to swallow and one that I know I shouldn’t even think about, but from time to time it is there.  Did I do this to myself?  If I hadn’t done the things that I did, would I have ever gotten cancer?  The truth is that I will never know.  And the rational side of me says that I can’t keep blaming myself.  But I will always wonder.

 

I have also struggled with myself spiritually.  Let me explain.  Those of you who know me know that I am a Christian.  I believe in heaven and I believe that those who obey God and follow His plan will go there.  So, why do I struggle so much with this overwhelming anxiety?  Why do I so long for my control over this situation?  I have prayed that God give me the mental capacity to pray and TRULY MEAN, “God, I pray that Your will is done in this situation.”  I know that God’s will is going to happen regardless of what I pray.  But, I want to be able to pray it and genuinely mean it.  Yes, I am cancer free right now and plan on staying that way for, well, good.  But, I still struggle with this.  I guess because I have wondered if I pray that, what if it is not the plan that I beat this for good?  And that terrifies me.  I mean, I don’t want to die.  Who does?  I don’t ever want cancer to be the thing that takes my life.  Again, this is MY post-cancer life.  I am sure it is different for many, but I’m also sure I’m not the only one who has ever struggled with this.  And these fears and anxieties definitely come up more during “test time”.  By that I mean my CT scans (which, if questionable, turn into PET Scans and, in the case of the latest, a biopsy.)  After I have been “cleared” by these scans, I tend to do a lot better.  As they approach, I tend to get a lot more nervous.  It is my aim and my goal that I get in a good place regardless of the situation.  Of course, I want to be cancer-free and any kind of illness free for all of my lifetime.  But, I want to truly be able to get to the place where, regardless of the situation, I can genuinely pray God’s will be done (and not “God, I pray Your will be done as long as Your will is to keep me cancer-free and healthy for good) and truly feel that no matter what “it is well with my soul.”  I hope this makes some kind of sense.  J

Ahhhh, I guess you can now tell why I am in therapy for this!  That is, if I mentioned I am in therapy.  Ha.  Well, there you have it.  This “place” in my mind was taking too much precedence and was becoming way too overwhelming so I sought help.  I see my therapist once every two weeks to try to deal with the many thoughts and emotions that come with this post-cancer life.  And it is helping me to sort through everything.  I know that it is probably very, very hard for some people to understand why in the world I would need to go to therapy after almost three years cancer free!  Well, first I would say because I do have fears that it will come back and I don’t know how to handle or address that.  But I am learning.  Secondly I would say because I believe in therapy and what it can do for a person.  I have a degree in psychology, for goodness sake, I better believe in it!  J  Learning how to change your thought process is so important for this.  And third, I would say don’t judge.  Those who have never experienced this who say or think that way truly have no idea.  It’s funny that those who have experienced a “c” diagnosis have told me the same thing.  It’s not living in COMPLETE fear.  Fear does exist, for sure, but it’s just a wondering that kind of nags at the back of your mind.  Any little bump or bruise or ache, you wonder, “Do I have cancer again?”  So, if you find yourself wondering why this is still an issue for me or anyone who has ever gone through this just remember that you have not walked in our shoes.  *Stepping off soapbox* J

So, I guess this sums it up for now, at least this aspect of life after the big “C”.  J  I will delve into other aspects, both good and bad, at a later date.  Thanks for reading!!!!  Share your stories!

Welcome to my Journey

Cancer Survivor.  It’s the club that you don’t ever want to be a part of because, well, it means you have had cancer.  However, it’s exactly where you want to be when you have been dealt those cards.  For me, it still feels very awkward and surreal to be able to categorize myself that way.  Almost three years to my “cancer free” date, I still can’t really believe I had cancer.  There it is again….seeing it written here.  It almost feels like I watched it happen, if that makes sense.

In order to get to the point of my writing this blog – life after cancer – I find it important to give the background of my diagnosis.  Some may know the in’s and out’s (assuming anyone actually reads this), and some may not.  So, here goes….

I married my wonderful husband Adam on February 21, 2009.  We were super excited about our new life together and saw nothing but great things on the horizon.  He had gotten a job he was excited about.  We were just starting out and we were elated to be doing so.  We were on this journey together.

A few months into our marriage, we got a gift we weren’t expecting so quickly!  I found out on Mother’s Day 2009 that I was pregnant.  We were scared but really excited.  And a bit overwhelmed!  I couldn’t believe this was happening!  We were going to have a baby!  I was going to be a mom!  I was ready to experience pregnancy and all the joys that came with it.

This brings us to when life took a swift turn.  I remember going out to dinner with my family one evening.  I had worn a shirt that revealed a mole close to my left clavicle.  My mom called me the following day and said that my dad really thought I should get it checked out.  I had noticed the mole changing.  It was getting darker and larger.  But I was scared to do anything about it.  I didn’t want to know that anything could potentially be wrong.  However, I decided to make an appointment with my doctor so that she could check it out.  She came into the room and looked at it.  She immediately told me that it was too big for her to do anything about it (it was roughly the size of a pencil top eraser) and told me that I needed to see a dermatologist.  I called the dermatologist the next day and immediately got an appointment.  They had a cancellation.  It was only later that I found out my doctor’s office had called as well to ensure that I get in asap, should they have not had an appointment.

I was a bit nervous.  I didn’t know what to expect and I was hormonal.  I remember sitting in the small examining room when the doctor walked in and asked, “Okay, where is this mole?”  I showed her and she instantly looked concerned.  She said, “This is going to need to come off today.”  It kind of shook me a little and I asked, “Why?  Do you think it’s something?”  She didn’t miss a beat.  She said, “I think it’s melanoma.”  Ok, admittedly, I didn’t know much about this disease but I knew it was cancer and I knew it scared me.  I knew I didn’t want it anywhere in my body.  I sat back in the waiting room for a few hours as she had other patients before me and wanted to take her time with removing this.  After those hours had passed, they called me back in and she removed it along with a few other moles.  They were going to biopsy everything and call me.

June 15, 2009 – almost two months pregnant.  I got the call while I was at work.  The biopsy came back and I had melanoma.  The other moles were okay, but the one by my clavicle was indeed cancerous.  I was devastated.  I generally always hold it together on the phone and I did with this call, but I lost it afterwards.  She told me on the phone that she wanted me to go to the University of Michigan to have a sentinel lymph node biopsy done.  Michigan has the best melanoma clinic in the country and this is the reason she wanted me to go there.  So, off to Wolverine country I went.  I did have to wait for about a month and a half before I could have the biopsy, though, because I was pregnant and they wanted to get me through my first trimester.

August 6, 2009 – This was surgery day.  It was outpatient.  They put a radioactive dye into my neck area and waited for it to drain.  It would drain to the “hot spots” (lymph nodes) that would be most likely to have cancer in them, if there was any cancer.  So, it drained and I had surgery.  They took out three lymph nodes and quite a bit of tissue from the original melanoma spot.  Let me tell you something.  I was soooooooooo not prepared for this.  It hurt so much worse than I thought it would.  It was awful!  But, I got through it and then we played the worst game in the world….the waiting game.

About a week later I received a phone call from the doctor who performed the surgery.  At this point, I wasn’t aware of the fact (at least in my world) that you don’t really want to hear from the doctor.  I have found that the doctor is the one who calls when there is something wrong.  The nurse generally (not always) calls when all is well.  Anyways, after the initial pleasantries, she informed me that the bottom two lymph nodes that were removed were clear.  As soon as she said this, I knew the other was not okay.  I don’t really know why, but I don’t remember thinking that it may actually be in my lymph nodes.  Deep down, I think I didn’t expect it to be.  I was very, very surprised.  And as soon as I hung up the phone, I bawled.  I was driving.  I called my mom and told her the news.  I was almost hyperventilating.  She wanted me to pull over but I couldn’t.  I just wanted to get home.  (My husband works for the Cincinnati Bengals and was at training camp at the time, so I was unable to get a hold of him for a while.  It was awful.  I did eventually contact him and he was able to come home for the night).  I got home and we cried.  My mom, my dad, and me….we just cried.  I remember my mom and dad going downstairs and my dad just sobbing saying, “No!  Not my baby!”  It was awful.  I cry as I write about it.  It was just such a terrifying time.

We pulled ourselves together and called the doctor again.  We ended up scheduling a moderate neck dissection for September 2^nd, once again in Michigan.  I was in the hospital for about four days with this one.  They took out 48 additional lymph nodes.  My husband and my mom rotated nights with me in the hospital.  I remember being so sick from my pregnancy, the medication I was getting, the fact that my gall bladder was shot at the time.  My husband would wheel my IV in the bathroom with me when I woke up in the middle of the night to get sick.  He would stand there and rub my back as I sat on the toilet and threw up into a bucket (being pregnant, I would pee everytime I threw up, hence the sitting on the toilet while throwing up into a bucket.  Graphic, yes, but just part of it).  He would tell me “that was a really good one” as I vomited.  I was a mess….post surgery, in an ugly hospital gown, pregnant, pale, throwing up, and my husband of 6.5 months rubbing my back and with me every step of the way.  True love.

We got word about a week later that all of the lymph nodes came back clear!  I was officially deemed cancer free and was considered that as of the first surgery, when they got that pesky node out of my body.  However, since it was found to have originally been in one node, I was still going to be starting Interferon treatments once Carter was born.  He was due January 15^th 2010, but was born December 23^rd, 2009.  I had gotten preeclampsia (as if things couldn’t have gone anymore wrong – I was hardly ever sick before 2009!) and he was delivered early via c-section.  Oh, and there was this….about a week and a half before my son was delivered, my ob-gyn told me that melanoma was one of the only cancers that could pass through my placenta to my baby.  I was totally blind-sided.  I didn’t have that “melt your heart, so in love” moment with my baby when he was born.  I think a bit of this was pure exhaustion from everything, but I think part of it was because I didn’t want to get overly connected and close to him in case I would still be sick or in case he was going to be sick.  I was terrified of “sickness”.  I just didn’t want to hurt anymore and the thought that I could have transferred cancer to my baby was too much.  So, my reaction was to pull away a bit.  It saddens me to write that, but I want to be so honest with this, so there you have it.  My placenta was biopsied and I found out about a week to a week and a half later that my baby was fine.  Relief.  (And, for those who may not know me directly or don’t know me too well, I absolutely adore my now 2.5 year old.  He is beyond a joy and my love.  I think it was just my natural reaction to want to distant myself at the beginning.  I just didn’t want us to get too close to each other and then one of us lose the other.  Hard to admit….)

Wow, I have really written a lot.  I felt it necessary to get a bit of the history out of the way in order to move forward with this.  I know it seems like more than a bit, but there was definitely more!  I will spare all of the details….for now.  J

My ultimate goal with this blog is to delve into the life of a post-cancer person.  The highs, the lows, the joys, the struggles, the successes, the fears, the thoughts, the obsessions, the on and on and on.  There are so many emotions that follow a diagnosis as significant as a malignant cancer.  It is my hope that you all (again, assuming anyone reads) give me feedback, provide your experiences, help us all “heal”.  I will say, there are blessings that come with a cancer diagnosis and we will get into those as well.  But, for now, this will suffice.  I look forward to going on this journey with you all.  May it be therapeutic for me and for all who are dealing with this new life.