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.