And So The Process Begins

I understand how you feel little man.  I totally understand.
 

So, let's see.  Monday I received my biopsy results and Tuesday I met with Dr. Stephens.  Wednesday I saw Dr. Wahle and had my stitches removed.  Also Wednesday I received notice that my appointment with Dr. Robertson at IU was scheduled for noon on Thursday.  So that's what I did.  I went to Indianapolis on Thursday. 

 

We discussed the options again.  Radiation vs Stem Cell Transplant.  Ultimately the decision remained the same.  So, we started the process in motion to receive the transplant.  And what a process its going to be.  I have to undergo a series of tests and appointments before I can be officially considered a candidate for the procedure.  Once that's all done, the request will be submitted to my insurance company.  Nothing else can happen until we get the approval from them.  Once we get approval, there will be shots given at home to grow stem cells, then harvesting the cells on an outpatient basis for a few days.  Then I can be admitted for the transplant.  So, who knows how quickly I will be able to get this done.  My wish was to be out of the hospital and home before school starts, but the Dr. and the nurse both said that wouldn't be impossible but not probable.  Tuesday I have to go to Indy for tests and a class on the process.  Wednesday I have more testing and a dentist appointment.  I had no idea a dentist would be involved in this process, but she has to write a letter saying my teeth have been cleaned and I have no abscessed teeth. 

 

One year ago, if anyone would have asked me what my life would be like a year from then, I'm not exactly sure how I would have answered.  I do know that I wouldn't have said, "Well, I'll be preparing myself for a stem cell transplant."  Definitely would not have been the answer.  This last week I have done a lot of thinking.  ALOT.  I've wondered why this is happening.  I've wondered if I have done something wrong and I'm somehow being punished.  I've been angry.  I've been sad.  I've cried a lot.  It has been a very emotional week. 

 

Thursday, on the way to Indy, I had a conversation with Jeremy.  It's funny how it worked out.  As I was trying to convince him that he shouldn't be angry and that he needed to just give all the anger and sadness to God, I realized that I had not been doing that.  I had been praying for things to be alright, but I hadn't been praying for God to take the burden from me.  And as we talked further about why this happened, I explained to him that God didn't give me cancer and that there was no reason to be angry with God.  Angry at cancer, yes.  Angry at God, no.  The Bible doesn't say that bad things won't happen.  In fact, it says the exact opposite.  It says that when bad things do happen, we are supposed to turn to God and seek his guidance and comfort to get through it all.  Let Him carry us.  Tough times aren't when we are too start doubting and questioning and turning our back on God.  We aren't supposed to start rebelling and rejecting and behaving in ways that are sinful.  No.  It's during these times that our faith should grow even stronger, and we should continue to do the things that God has asked of us.  None of us know the path that God has planned for our lives, but He does.  And He isn't concerned with the path or the obstacles that show up on that path.  What He is concerned with is how we react to the obstacles.  Do we reach an obstacle and give up, turn around and go the other direction to avoid the struggle?  Or do we proceed forward, continue towards the obstacle and turn to Him for assistance?  That's what He is waiting to see.  How we react.  The more we discussed this, the more I talked, the more I realized I wasn't just talking to Jeremy.  I was talking to myself too.  I needed to hear this and it just happened that I was the one I heard it from.  

 

I really hope all the test results are completed this week, so it can be submitted to insurance by next week.  And hopefully the approval process doesn't take too long.  In the mean time, we wait.  Again. 

 

 

The Results Are In...Round Two

 

This is a picture of an elephant climbing uphill.  Exactly what I feel like. 

 

Let me start by apologizing for not posting yesterday.  I have received several messages and texts from friends and family wondering about the biopsy results.  I didn't post because I knew after I posted the results I would receive a stream of questions that I couldn't answer until I met with the Dr.  And I met with him today.  So, here it is. 

 

The biopsy results were not the good news we were hoping to receive.  Classical Hodgkins Lymphoma.  I still have it.  Pretty sure we never killed it all the way.  What probably happened was we knocked 98% of it out, but the remaining 2% never completely went away.  The chemo was probably keeping it from spreading/growing.  And it was under control to the point that, according to my CT scan in February, I had no abnormalities in my lymph nodes so clinically they could say I was in remission.  However, just because the CT scan was "normal" that doesn't mean that I didn't have cancer cell activity at the same time.  And, for those of you wondering, removing the remaining lymph nodes that have visible disease doesn't solve the problem.  Only solution is to kill it all.  The visible and invisible cancer has to die.  Completely.  Not just die a little.  It has to die all the way dead.

 

Not my ribbon color but who cares.  It's true!!!
 

Basically I have two choices.  Radiation is choice one.  The good thing about radiation is that it will very likely kill the bad guys.  It's quick.  Painless.  Short term side effects are minimal.  The bad thing is the long term side effects.  Since the radiation would be to my chest, the chances of developing a secondary cancer (such as breast cancer or thyroid cancer) over the next ten years is extremely high. 

 

Choice number two is a stem cell transplant.  The good thing about stem cell transplant is that it WILL kill the bad guys.  The long term side effects are very rare (1% chance of developing a secondary cancer).  The bad thing is the short term effects, mainly fatigue.  It is not a fast process.  I will have to be in the hospital and/or nearby the hospital in Indianapolis for about a month or so.  Recovery time is probably two to three months. 

 

I know what you are wondering.  What did I choose?  Well, I chose stem cell transplant.  And here is why:  It's the best option.  I don't want breast cancer, but I do want to get rid of my current cancer.  Stem cell transplant is a very common second line treatment for Lymphoma.  I have two doctors (one a general oncologist and one Lymphoma specialist) telling me that this is the best option.  Dr. Stephens told me this today, "We want to ensure you are still here in 50 years.  The stem cell will do that."  Not sure if those were his exact words, but that's pretty close.  I don't want to do this, but I have too.  I have to get rid of this %$^&*(% cancer!!! 

 

 

I don't know all the details yet.  Tomorrow I should find out when my next appointment with Dr. Robertson at IU will be (I'm assuming next week).  At this appointment I will have a more in-depth conversation with Dr. Robertson.  We will also meet the entire transplant team and tour the facility.  Then I suppose we set a date to begin.  Dr. Stephens said I didn't have to do this tomorrow, but he wouldn't wait six weeks either.  I personally want this done and over so I can be back home recovering before school starts.  My kids' lives are going to be and have been disrupted enough without me and/or Jeremy being gone during those first few days of school.  So it has to happen in July.  I cancelled our anniversary vacation reservations today.  That sucked.  We were both really looking forward to some time alone on the beach.  Just can't happen though.  We need our vacation time so we can be in Indy and still get a paycheck.  Maybe next year. 

 

The way this has been explained to us is that first they will harvest millions of my stem cells (I am told I am hooked to a dialysis machine for this procedure).  Then they freeze them.  Next, I am given a very high dose of chemo (so, yeah, I will lose my hair again.  Whatever).  This is done to kill everything that's left.  My immune system will be zero.  Then they unfreeze the stem cells and put them back in.  Then we wait and see if my body responds appropriately by making new cells and whatnot.  After a three week hospital stay I will be allowed to leave, but must stay close to the hospital for daily checkups.  Once allowed to come home, I will have to see Dr. Stephens about three times a week.  And that's all I know about that right now.  Hopefully next week I will have more details. 

 

 

 

Now that the technical stuff is out of the way I will say this:  This is the hardest thing I have faced yet.  I honestly wasn't scared after my initial diagnosis.  I was dreading the treatment, but I wasn't scared.  I knew I would be fine.  After all, so many people I know have been through chemo and everything was fine so I knew I would live through it as well.  And I just knew that chemo would do the trick.  No fear.  Zero.  Nada.  But now, now is different.  I have had butterflies in my stomach for two solid days.  I'm scared.  I want to do this even less than I wanted to do chemo.  Just the thought of being gone from my girls for three weeks makes me want to abandon ship.  Having to miss work for about three months doesn't sit well with me either.  And the burden this puts on my family and friends is just ridiculous. 

 

 I'm doing my best to remain positive.  I know that my mental state plays a huge role in how well I physically handle everything.  I am well aware of that.  And I have been reminding myself of the positives, because there are always positives.  For one, it's still Hodgkins and is still very treatable.  I can and will beat this.  That is the most important thing.  Another positive:  I have the worlds greatest family and friends.  I am certain we will have more than enough help getting through all this madness.  I have had so many friends reach out to me today and offer to help mow grass, take care of my house, my kids, etc...  My family has already committed to doing whatever needs to be done as well.  I am so thankful for all of these wonderful people.  Everyone has problems and adversities, but not everyone has the amount of support that I do.  So, even though life is throwing crap at me right now, I still have so much to be happy about.  And that is what I will try and focus on.  Happy.  Fill my life with as much love and happiness as I can.  Because, really, do any of us have time to do anything but that???     

 

 



Surgery Update

 

I underwent surgery on Thursday to remove the enlarged lymph node for biopsy.  All in all, the surgery was a success.  Dr. Wahle was able to remove the lymph node in tact, which was what we were hoping he would be able to do.  He told Jeremy that he didn't see any other enlarged nodes.  I don't know what relevance it has, but he also said that he saw scar tissue from my prior surgery.  Jeremy was very upbeat about what Dr. Wahle had to say.  Evidently he talked to me as well but I don't remember it at all.  Something about being under the influence of Propofol that makes you not remember things.

 

There was one down side to this surgery.  Dr. Wahle had to cut some nerves in order to reach the lymph node.  He said that this may cause me to have numbness or a tingling sensation and he doesn't know if it will ever go away.  Well, it has in fact caused numbness throughout the right side of my chest and my right upper arm.  And the left side of my tongue.  I have no clue if the tongue issue is related to the cut nerves, but I feel like it has too be.  It is the strangest feeling.  My chest and arm feel like a solid brick wall, like they weigh a thousand pounds.  I really, really hope this goes away.  But if it doesn't, oh well.  I'll get used to it eventually. 

 

So now I just wait until one or both Dr.'s call with the biopsy results.  Dr. Wahle said he thinks we will know something on Monday.  I don't think I will hear anything until Tuesday.  No matter what day it is, it won't be soon enough that is for sure. 

 

 



Can You Imagine

 

 

I want you to imagine something for a moment.  Imagine that you are happy with yourself.  That means that you like the way you look...you like your hair, you like your eyes, you like your body.  You like you just the way you are at the moment.  And, actually, you have worked really hard to get to this point and have no plans to ever not be like this.  You plan to be happy with the current you forever. 

 

Imagine with me that you are in love with your life.  That means that you love your family, of course.  But it also means that you love your friends and all the other relationships in your life right at this exact moment.  It also means that you love your place in life...your career, your role at home (mom, dad, sister, daughter, etc).  You really do love your life. 

 

Imagine that you are completely healthy.  You never get sick or feel bad.  It's always you taking care of everyone else, because, well, you are the one that never gets sick.  You have become accustomed to being the caregiver, and you are fine with that. 

(This is where you close your eyes and really imagine all of these things.)

 

 

 

 

Now.  I need you to do something else.  Imagine that all of those things you just imagined are gone.  Yes, all of them.   Why?  Because you find out that you have cancer.  Yes, you.  The healthy one.  The caregiver.  You.  Instantly you are not that person you just imagined.  Suddenly, you aren't happy with you.  Granted, you had never planned on this happening because you really liked you so why would you change anything?  But, all that hard work you put into yourself to get to where you were, well, it's like it never happened.  All those people in your life that you love?  Well, all of a sudden some of those relationships change.  Some of the people closest to you start to pull away.  You haven't done anything any different, yet this still happens.  At home things change too.  And work, well, it's still there but you have a totally different view about it now. 

 

The person that you just imagined is me.  You just imagined my life over the last seven months.  Not even a full year.  All the weight I lost and the complete transformation I worked so hard for...gone.  Chemo has a way of putting weight on me (like 20 pounds of weight).  It put me right back where I started almost three years ago.  Right back to the place in time that I decided I had to change because I wasn't happy with myself.  For whatever reason my cancer diagnosis has changed a few of my closest relationships.  It boggles my mind how or why anyone could abandon someone when they need them the most, but whatever.  Once I started chemo I was no longer the caregiver, and that was really weird.  A huge adjustment for me.  I am a very independent person, so having other people do what I have always done myself was hard to accept.  And work, well, it's work.  Probation work will never cease to exist.  That's about all I can say about that. 

 

 

I am well aware that I'm not the only person on the planet who has been through this, and I am not writing this for any reason other than awareness.  I want everyone who takes the time to read this to understand why, sometimes, people going thru cancer treatments may struggle.  I want everyone to understand that why, sometimes, people who have finished chemo still have a hard time mentally.  I want everyone to understand that it isn't just a physical toll that chemo and cancer take.  The emotional/mental toll is often much higher and people don't often get that.  People don't always think about what may be going on inside.  They only see what is going on outside and assume everything should be fine and wonder why it isn't.  Many people think that once the cancer is gone there is no reason to be negative or depressed.  But let me tell you, all of the changes that take place and how quickly they take place creates problems within a person.  And, most of the time with everything happening so quickly, the cancer patient doesn't have time to really process what is going on until treatment is over.  Then, when reality slaps you in the face, you begin a new struggle.  The physical battle may end, but the mental struggle is just beginning.  I want to make people aware that the effects of this journey last a long time.  If magic were real and cancer patients could say a few magic words and instantly go back to the life that was taken from them when they were diagnosed, then yeah, negativity and depression would disappear.  But we all know magic isn't real and life just doesn't work like that.  

 

 

 

 

 



Surgery Is Scheduled

This is exactly how I feel.  Exactly.

 

I met with Dr. Wahle yesterday (he is my ENT and performed the first excisional biopsy back in October, 2013).  He was VERY thorough, and had me read the reports in my file with him.  Dr. Wahle is such a kind and caring man.  He is so precise in what he does and makes sure that he doesn't skip any detail.  We discussed the last biopsy and he examined the incision site.  He commented that I had healed almost too well because he could hardly see the scar, which made it difficult for him to determine where the new incision will be made.  He felt around on my neck to see if he could feel the node, and he did right away.  He reviewed all the possible bad things that could happen with this surgery, from possible nerve damage to shoulder issues he discussed it all.  Last time he was able to remove the whole node completely intact.  He isn't sure he can do that this time, given the location of the node, but said he would be able to get enough to provide a sufficient sample to the pathologist.  He said the surgery will take 1.5 hours.  Now, I don't know about you, but my experience with nurses is that they are generally pretty nice.  But his nurse, she is top notch.  Seriously.  She knew I wanted this done ASAP, and tried her hardest to get that done.  She even called the surgery center to see if she could move an entire morning worth of surgeries just to get mine done this week.  It was out of her control though, so the earliest she could get me in was next Thursday at 1:00.  You know what the worst part about that is?  Worst part is not being able to eat or drink ANYTHING after midnight.  Holy geez. 

 

I thought I was done having this needle poked in my chest.  I'm not. 

 

Today I had to go to OHA and have my port flushed.  I haven't had to do this yet, so I wasn't exactly sure what to expect.  However, when contemplating what would be done, the thought that I would have to enter the chemo room never crossed my mind.  I assumed the nurses up front that take vitals and do bloodwork would do this.  I WAS WRONG.  The receptionist asked me if I knew where to go.  I said "I just go back there, right?"  She said, "No, no.  Go back there and wait to be called back."  Just so you all know, "back there" is another term for "that room that you went too that made you really sick for six months."  I sat down and instantly started feeling like I was going to vomit.  It was ridiculous.  Just the thought of having to go in that room again messed me up.  I almost started crying.  I considered just leaving, but quickly got rid of that idea.  I did not want to go back there.  Not at all.  But the weird thing was once I was back there, I suddenly felt a calm come over me.  The nurses remembered me and were asking me how I was doing.  The pharmacy guy recognized me and was happy to see me.    The nurse doing my port flush remembered me as well and we began chatting about what was going on with me.  She was so understanding.  When we were done I said, "Done already?"  I somehow didn't want to leave.  I felt comfortable there.  Accepted.  Understood.  It was such a strange and quick change in emotions. 

 

 

I'm ready to know what the crap is going on.  Ready to move on one way or another.  I wish I didn't have so long to wait, because that just gives me more time to utilize Google.  More time to research possible treatment options.  I don't need to do that.  Not yet.  Hopefully not ever.  Guess we will find out soon.

 

 

 



Surprised AGAIN!!

 

 

Yesterday was Relay For Life at Mt. Vernon and North Posey.  I had committed to walking the survivor lap at Mt. Vernon and participating in the luminary ceremony at North Posey.  What a long but wonderful day!!  I obviously have never participated in either so both were a first for me.  I have never seen the opening ceremonies or a survivor lap, so I was just following everyone else's lead.  First was the group photo.  Then, we sat in a designated area to watch and listen to the opening ceremony.  As I sat and listened, they began talking about the Courage Award.  I didn't know that existed until yesterday.  I'm sitting there, listening to the nomination letter being read, when it dawns on me that what she is saying is about me.  As soon as I heard, "When I got that phone call in November, 2013..." I knew.  Oh man.  As she continued to read, I began to cry.  I tried my hardest to hold back the tears, but it was pointless.  I couldn't believe it.  Me??  Courage Award???  I just live life, so how is that courageous??  Hard for me to digest.  They called my name and I composed myself enough to walk up and accept.  As I'm walking up I look over and see my entire family standing there.  Oh my.  I had no clue they were there.  Two surprises in one day!!  Thank you Courtney Price!!!  I knew I kept you around for a reason!!!  ;) 

 

 We split the day between Mt. Vernon and North Posey.  I participated in the luminary ceremony at North Posey, which ended up being held in the high school cafeteria because of storms.  It was totally different than what they had planned, but it worked.  And just let me say, I  never ever imagined I would be the one saying, "I relay for me."  Weird.  Just really weird. 

 

The whole Relay experience was surreal this year.  In years past we have participated so that wasn't any different.  What made it surreal was seeing my daughter making a luminary bag that said "In honor of  "MOM."  Seeing my name and picture in the "Survivor" slide show.  Getting in front of the crowd and saying "I relay for me."  And most definitely receiving the Courage Award.  This whole cancer thing still seems like a dream.  Seriously.  It doesn't seem like it is really happening.  But, it must be because if I was just dreaming it all, last night I wouldn't have dreamt that I was walking in a field and found an abandoned baby.  What the heck?????   

 



Today I Met With The Lymphoma Specialist

 

I'll keep this post short and to the point.  We traveled to Indianapolis today to meet with the Lymphoma specialist Dr. Robertson.  Let me just say that I didn't like being there.  At all.  Don't get me wrong, it was a very nice building and office.  What I didn't like was seeing all the people in wheelchairs, people with bandana's or hats on their head, people that appeared to not be doing very well.  I haven't seen this in Evansville, but then again most everyone at IU medical center is their because they have been referred by another doctor.  Reality kicked me in the gut that's for sure. 

 

The news I received today wasn't all bad.  He told us that he couldn't say just from the PET scan or my file or my enlarged lymph node what was going on.  He said that it could be active Hodgkins.  He also said that it might be that my lymph nodes are reactive, or in other words having an inflammatory response as a result of chemotherapy.  He just doesn't know without a biopsy.  If it is reactive, then the lymph node should go back to normal size on its own in a few weeks.  Dr. Robertson agreed that my results are uncommon, but he has seen it before, and he has had some patients that it was simply a reactive response.  

 

So, I have two options.  I can wait a few weeks and see what happens with the lymph node.  If it doesn't decrease in size, then I will need to have another excisional biopsy.  Option two is to just go ahead and do the biopsy.  Obviously the biopsy requires surgery, and since it is on my neck the risk involved is a concern.   

 

I don't know anymore now than I did at 8:00 this morning.  All I know is that I have two options.  I really wanted him to tell me exactly what to do, but he didn't.  He was strongly suggesting that I wait and see.  I have an appointment with Dr. Stephens next week and I will discuss my options with him.  I don't think I want to wait.  I want to know what the $%^& is going on, or not going on.  We briefly discussed what the next step would be if it turns out I still have active Hodgkins.  He didn't even mention the word radiation (that's what Dr. Stephens indicated was the next step).  What he did mention was a stem cell transplant. 

 

Let's all pray that it's nothing.  A stem cell transplant just doesn't sound like fun to me.