Friday, November 19, 2010

Again the ER?

I am very privileged to have a house full of boys.  With that privilege comes a lot of ER visits.  I was told years ago, during a visit, that boys are in the ER 5 times more often than girls.  I have nothing to compare this to since I have no girls.  I do know that we’ve experienced 10 broken bones, 5 surgeries, poison swallowing (Peter), flesh eating bacteria (Ben), and a forehead colliding with a tree (Cam).  Eli - whose initials are ER and who is constantly running into stuff - is our only child to not grace the halls of an ER.  Two of our boys ended up at CHOC (Children’s Hospital of Orange County) a total of 3 times.

All this background information brings me to my current story.  This past Friday, Peter started having stomach issues.  Because the flu has been going around, all I could think was “please no, I can’t stomach smelling his vomit.”  Yes I am that petty and that punny (big cheesy smile). 

We watched him all day Saturday doing our best to rule out the flu, gas, rotten food, anything involving the stomach.  The pain kept getting worse to the point where Pete couldn’t walk.  Because we ruled out everything we could think of, we knew we had to take him to the ER.  Especially since a long, long, long time ago Reed had to have his appendix removed and was having deja vu.  So, we helped Pete to the car, called Cam and asked if he could come home, and headed to Hoag.

After several hours, a blood draw and an ultrasound, we were transferred to CHOC and were told that Pete would be having surgery to remove his appendix that night.  The transfer was Pete’s favorite part of the experience.  He was taken by ambulance.  The very young (cute) male EMT was super excited that he was transferring a child, especially one that enjoyed conversation.  Pete had been given some pains meds so he was feeling pretty good at that point!!

We got settled into CHOC and waited...and waited, and waited.  Because it was the weekend, the surgical staff was limited and decided it was best to operate on Pete the next morning with a rested surgeon rather than late Saturday night with a tired surgeon.  Good decision.  Reed and I figured it was safe for him  (Reed) to go home and get some sleep...or at least try.  I stayed at the hospital with Pete and was promised I’d have plenty of time to give Reed a heads up if we were taken to surgery early in the morning.

After a quality night’s sleep in the most amazing bed ever (not really), and Reed arriving before I fully woke up, we again waited.  Peter was restless most of the night and in pain but wasn’t showing many of the signs the doctors look for when diagnosing appendicitis.  Despite the findings on the ultrasound, Peter was not nauseous, he was hungry, had bad pain but not severe, and didn’t have a fever.  All this caused the surgeon to pause and order a CT scan to rule out a virus that mimics appendicitis. 

The scan came back positive - for appendicitis. 

Peter finally had surgery around 5:30 in the evening.  It was a really long Sunday and I was thankful that, right before surgery, my mom made it to town to help.  I was thrilled that she and the boys (minus Abe) were able to be at the hospital during the surgery.  Something about them being there felt so right.  It helped to put me at ease. 

After Peter was back in his room from surgery, I went home to shower and change then left my mom to keep things “normal”.  I returned to the hospital and Reed and I switched duties.  Sunday night Pete slept like a rock and so did I. That night the chair-bed honestly was incredibly comfortable.  That’s what fatigue does.

Monday was a new day.  Peter was doing well enough to be discharged by late afternoon.  We were heading home!

What I’ve known during this long cancer journey is that no matter how pitiful things get for me, I will always be a mom.  If I had not had this, I honestly don’t know that I would have faired so well.  I’m certain that God would have given me other things to feel life through but I am incredibly thankful that he gave me a bunch of boys instead.  Boys that in so many ways keep me alive.  Either by making me laugh until I cry or making me so frustrated I want to cry. 

Is it hard combining cancer with motherhood?  I would be a foolish liar if I didn’t say yes.  But it’s taught me so much about what really matters when raising your children.  I’ve learned that it really is okay to not be involved in every little activity - whether theirs or ours.  Boundaries are good and actually healthy for overall family life.  Cereal can be used for three meals a day, especially if milk is used.  Dinner together doesn’t have to be home cooked or even at home.  It’s not excessive if I spend money to have my house cleaned but the boys still need to have chores and structure.  No matter how tired I am, disciplinary follow-through is crucial.  It’s okay if my boys see me tired and unproductive.  Pajamas are clothes and it’s okay if Eli lives in them for days and days (not in the same ones).  I can’t do everything for my kids so it’s okay if they take on responsibilities earlier than I originally thought they would.  It’s okay to spoil when given the opportunity.  It’s okay to do school from my bed.

It’s also okay for them to see me hurting and crying out to God for relief.  It’s okay for them to see me frustrated and sick of this journey.  Hopefully, they also see that I’m trusting God’s promise to heal me and hopefully that balances it all out.

Tonight I started round 3 of the chemo pills and I did it right!!  Four more days to go...this time.

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!