Thursday, November 11, 2010

Pills, Pills, Pills

Pills, pills, pills.  Pills to kill the cancer.  Pills to deal with the nausea caused from the cancer killer pills.  Pills and then more pills to deal with the constipation and other side effects of the anti-nausea pills.  Pills to deal with the low iron levels brought on by the cancer killer pills.  Pills to deal with the actual cancer pain and the headache of having to take all these pills.

Funny thing (as in ironic...cause it just isn’t worthy of a ha, ha, ha or a hee, hee, hee) before this fiasco began, I didn’t take pills.  Not for headaches.  Not for allergies.  Nothing.  Supplements were another story but I’ve just never been a pill popper.  I now consider myself pro status because I’ve had so much practice.

Anyway, last month I told you that I was cautiously optimistic.  This month I still have cautious optimism but have added hope back into the mix.  This despite being in the ER the night of October 24. For reals.

The back story.  On Friday morning, October 22, I started feeling an intense pain in the center of my chest.  Even though the pain was intense, I wasn’t having “heart attack” symptoms so I was pretty confident it wasn’t actual heart trouble.  Also, I was able to get the pain to subside by taking a pain pill.  So, later that evening, as scheduled I started my second round of chemo pills. 

Saturday was much like Friday.  Chest pain alleviated by pain pills.  But then Sunday came and no matter what I did, I could not get the pain to subside. It was actually feeling worse.  By late Sunday evening I was in so much pain that I couldn’t stop crying.  Unless we’re talking about needles, I have a pretty high pain tolerance.  But when the pills aren’t taking the edge off and it hurts every time my heart beats, it’s probably best to get it checked out. 

So, because I was upstairs lying in bed and Reed was downstairs, I texted him and said “I think I need to go to the ER”.  So lame.  Why was I surprised when I heard him RUNNING up the stairs?  Did I really think he was going to casually walk up the stairs and say “what’s up?”   Seriously lame.

After letting Ben know what was going on, we left for the ER.  I’ve heard for a long time that possible heart problems are taken very seriously at the ER.  but I was in awe of how fast I was wheeled to a bed, assisted in getting into a gown, and hooked up to leads and a heart monitor.  After several hours of heart testing, blood work, and a CT scan we found out that my heart is in great condition.  Also, I did not have a collapsed lung or any obvious chest fracture.  What I did find humor in though was the look on the CT tech’s face when she realized, by looking at the scan, that I had cancer.  I think she thought someone was going to have to give me some bad news.  Oops.  I assured her that I knew it was there and thank you very much for caring. 

Anyway, the ER doctor said the pain was likely from a muscle pull (or some kind of pull) from all the vomiting, coughing etc. that I’ve been experiencing for weeks.  All I knew is that every time my heart beat, I was in severe pain.

Our date night in the ER ended around 3:00.  We went home, talked for a while with Cam, Ben, and Chelsea and then headed to bed.  Cam and his girlfriend had come to the house to hang with Ben for the night.  I was really, really thankful they were there.  Peter and Eli didn’t know anything until late Monday and Abe was at school praying for me with friends.  I was so doped up with pain killers and anti-nausea meds that I actually slept pretty well that night.  Not long but well. 

Monday was a brutal day on many levels but it was the day the pain began going away in my chest.  It took a few more days for it to be completely gone but at least I knew that my heart was okay.  That in itself was heavenly.

About a week later, on November 1, I had my monthly doctor exam to check “my numbers” and other vitals.  I didn’t know that the ER was going to send my lab work to my doctor so imagine my surprise when my nurse Donna walked in and said “Why were you in the ER?”  What??  I wasn’t planning on sharing that information!  It didn’t seem necessary since all was well but what I didn’t realize was that all the blood work that was done showed that my numbers were better than they were just a couple of weeks prior on October 4.  This was REALLY encouraging.  From October 4 to October 24, 20 short days, my numbers had dropped significantly.  This gave me A LOT of hope for what my November 1 numbers would reveal.  Especially since the swollen lymph node in my neck was OBVIOUSLY smaller than the previous visit. ER visit ended up being positive on many accounts.

What’s adds to the “encouraging” news is that my November 1 blood draw results show that my numbers have come down even more and the lymph node in my neck is, at this point, nearly normal size.  My liver function is showing normal, my tumor markers are down, and some other number that shows improvement in my bones is down. 

Even more amazing is...for the first two treatment cycles (Sept. and Oct.) I took the pills incorrectly :/.  How does this happen?  I don’t know but I’m thinking that a combination of serious, serious fatigue, a brain trying to heal from weeks of whole brain radiation, and the chemo pills themselves might play into it.  I obviously didn’t understand the instructions I was given by my nurse or the pharmacist because when I received the pills in the mail all I saw was two I thought was for September and one for October.  I didn’t realize that both bottles were for September - that I was supposed to take 2 pills from the 5 mg bottle and 2 pills from the 100 mg bottle equalling 4 pills or 210 mg.  Uh oh. month I was taking 10 mg and the next I was taking 200 mg and I honestly don’t know which was which but I have an idea that October was the 200 mg month because the fatigue and nausea were significantly worse.  But, I can only guess.

This month I will do it right.  I will take all 4 pills all at once.  I just have to remember to take 2 from each bottle and not 4 out of one bottle.  Hope I can handle that.  I will be starting these pills the Friday before Thanksgiving so I’m expecting to be incredibly tired come Thanksgiving Day.  Thankfully, my mom will be here taking charge while I’m sleeping!!!  YIPPEE!!!

So this is where I am mentally today.  This month marks 12 years for me since this journey began and 4 years since I experienced an incredibly significant and scary but beautiful spiritual experience.  One of these days I really want to share the story but I’m not’s not time.  For a long, long time now I’ve not really felt God’s presence.  I know that He’s carrying me through all of this and I know without a doubt that I am still alive and fighting because of the strength He’s given me.  I’m not strong.  He is.  I am pig headed though. 

I do not like not feeling God’s presence but I’ve learned that sometimes that’s necessary in order to truly hit bottom and fully put my trust in Him.  Every time I hit bottom, I think it can’t possibly get any worse.  And then it does.  I am loved and cared for more than I should be and I know that this is my friends and family being the arms and legs of Jesus.  I have been given verbal riches and special moments with people that are irreplaceable and would have never happened had I not be “blessed” to experience this journey.  I know this is God.  All of it.  Sometimes it’s just unrecognizable. 

I know without hesitation that my husband and my boys keep me going.  God has given them each a special role and it’s been awesome watching that blossom.  Reed is confidence and strength, Cam is protector, Abe is prayer warrior, Ben is joy-filled, Pete is gentleness, and Eli is persistence.  Whether they realize it or not, they’ve encircled me allowing me to feel safe and giving me the desire to continue the fight.

Tonight it’s easy because, other than serious writer’s block for days and days, I’m feeling pretty good.  In regards to my health, it’s been a good month.  It’s EASY to be hopeful when all is going apparently well.  It’s EASY to be hopeful when you aren’t feeling the darkness of the disease or the loneliness that can’t be shaken.  It’s EASY to feel hopeful when you’re not feeling nauseous and brain clogged.  Unfortunately however, this is not the majority of my days. These days are few.

But somehow, whether of my own choosing or not, I manage to get up each day.  It might not be until 10:00 and I might not be out of my pj’s until 12:30 or never and I might end up back in bed but I AM still surviving.  And, for today, I’m once again hopeful!


  1. Ok, I found it and am reading the update!!! Love everything about this - especially how you describe each of the boys with a word that so beautifully portrays them. Thankful for hope and good news. I love you so much my precious friend. Thank you for making time for me even though you are so POPULAR!!!!!!!!!!!!!!! You will never, ever live it down. I promise. That's what friends are for: to keep you grounded :) xoxo

  2. The first part hurt my heart. The middle made me smile at the progress. The last left me teary, but so proud at the light of God shining out of you despite your circumstances.

    Do you need a pill box? You cannot possibly be expected to remember so many details with such mental fatigue! XO