Tuesday, June 24, 2014

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???     
 
 


4 comments:

  1. I'm proud of you girl. Stay positive it's mental and you can get through this. Thinking about you

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  2. hi michelle, we just found out my husband (age :51) has hodgkins. my daughter and i are following you're your blog...thank you and prayers you're way.

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    1. Thank you for the prayers! I hope in some way reading about my journey helps your family as you begin yours. Let me know if I can answer any questions for you along the way!

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