Chemo – Round #1
There are some things we should have done totally different today. Rookies!
#1. Walking in for your first round of chemo should not have to begin with paying a bill and being told how much each chemo treatment costs. They shouldn’t tell you that the shot you have to take the day after chemo to raise your white blood cell counts costs $12,000 each and probably won’t be covered by your insurance! I would have rather had done this part yesterday or last week. I know it would have been awful if I was coming from out of town or a ways away, but I live 10-15 minutes away. The bill would have been the same yesterday, but my emotions were in a different place then.
#2. “The Healing Garden” that sounded so inviting, calming, and peaceful is DEAD because it’s outside the all glass windows of the very, sterile chemo lab and it’s winter! I’m hoping this will be more how I envisioned it once spring returns. I should have requested a tour of the chemo lab prior to today. I was in no way emotionally or mentally prepared for all those people in their chemo chairs hooked up to IV poles. I nearly lost it and cried, but my rock of a husband saved the day once again with his humor.
#3. Don’t wear a hat over your very short hair even if you’re freezing! The nurse will assume you’re a pro at this chemo business because you already look like you’ve lost all your hair, and she will fail to communicate with you what’s going on. This caused me to panic a bit, and my husband might have wished her ill will. I’m thankful she finally figured out we were Rookies at all this, changed her attitude, and slowed down to better explain the last several steps to us.
#4. All Saran Wrap is not created equal in Chemo Land. Rookies again! We now know we need the Snap ‘n’ Seal type to put over my port. Who knew?
#5. The numbing cream you are supposed to put over your port needs to be A LOT and at least 30 minutes before the nurse stabs you. Rookie mistake again!!! We even told her we’d just put it on, but she was on a mission and wasted no time nailing me! Ouchie!!! No tears, but I wanted to either cry or hit the poor lady!
#6. Four days after surgery, your port is still very swollen and badly bruised. It still has stitches in it. It still puts my arm to sleep once or twice a day. Guess what? When you put pressure on it, water wants to gush out of my eyes!
#7. People really struggle with humor and cancer. It’s okay to laugh people. We have cancer, so that’s depressing enough. Laugh with us every chance you get. Laughter is great medicine. Cancer can kill us. We get that, but we aren’t dead right now. I’ve never loved to laugh as much as I do now!
#8. My chemo starts with a bag of saline. Then they add a cocktail bag of steroids (you’d think with Addison’s I already took enough of these, but I guess not), anti-nausea medicine (puking in the chemo lab must be frowned upon), and there’s something else in there, but I honestly can’t remember what it is. Next comes “The Red Devil”. This is my first chemo drug. It starts with an A. It’s the one that could damage my heart. (See, I remember all those connections from chemo school) The nurse has to sit by you and manually push this drug through your IV. This was good. She showed off her human side and helped us see she really had a heart. I needed this at this point in the game. The “C” drug is last. It comes in a bag too, and takes about an hour to drop it’s way into me. If you are big on knowing the specific names of drugs, I’m sure you can Google them because chances are I won’t ever write about them. Number one, I really don’t care what you call it as long as it works. Number two, I couldn’t spell it even if I could pronounce it.
#9. I took my prayer blanket Kim made me. It was a lifesaver. Cold equals less germs which is good. Cold also equals the nerves I don’t have anymore to totally freak out which is painful. Don’t ask me how that works because I have no clue. Rookies did good on this one! Plus, Jonathan found me a heated blanket that added to my comfort.
#10. My socks were too thin. Lesson learned. I’ll get some cool fuzzy, fun ones for my next 15 sessions. Might as well have fun with this!
#11. Ice chips are your friend. I don’t know why, but the kind lady next to me told Jonathan to get me some. I think it’s for the really nasty taste everyone complains about. I didn’t get that, so I just chewed on it to keep my mind off what was really happening. I really wanted food. Jon bought me some, but in the chaos of getting me and all my stuff to the clinic, all my goodies were left behind. I guess I’m kind of like having a baby all over again. It takes a bunch of stuff to get me anywhere these days. Rookie mistake number . . . I’ve already lost count.
#12. Take Chapstick. I like Burt’s the best. Those drugs must hit your blood stream and instantly suck every ounce of water out of your body. Rookie save – we were armed with two different flavors today!
#13. There are grants and things to help for things you need but can’t pay for. No, they aren’t always easy to find or understand how to get if you are the patient. Our finance lady hooked us up with one today though that will end up saving us about $192,000 over the next five months. Remember that $12,000 a shot white blood cell booster I spoke of earlier? Well, now I have a discount card that lowered the cost to $25 each. That’s a whole lot easier on my psyche! Thank God for miracles performed by ordinary people!
#14. Someone should warn you before you go to bathroom that your urine is going to be orange! Wait! My husband thinks they might have told us about that. I think that was part of the 90% of information you can’t hold on to while being told “bad news”. Our brains our great at protecting us from things only to allow us to be totally freaked out by them at a later time! Now, I’m just wondering which superhero might also pee orange.
#15. We’ve been told everyone’s chemo experience is different, so of course mind has to go outside everything we were prepared for. My nose went crazy and revolted to the smells of chemo drug #2. It made my nose burn, my eyes water, and made me look like a cry baby when I didn’t even feel like crying. It comes and goes still hours later. Chemo drug #2 I will also blame for making me feel like my insides were on fire for about four hours after treatment. How you can feel like you’re on fire on the inside and be freezing on the outside is beyond me?
#16. One patient’s husband came dressed up as Santa Clause and passed out tootie fruity candy canes to all of us. That was super sweet of him! He made me smile. It reminded me that it’s really the little things in life that often make us smile the biggest.
#17. The wifi didn’t work very well, so I couldn’t get my movies or shows to load. I saw lots of people reading. Maybe my comprehension will have improved enough by next time I can handle reading a book. Maybe I need a portable DVD player for Christmas. I’ll figure it out.
#18. The actual treatment didn’t really make me nauseated, but I did get kind of dizzy and lightheaded at the end. That may actually be my Addison’s Disease trying to protect me though. That’s one of the common side effects I struggle with from it, so I’ll call my endocrinologist in the morning to check on everything and see if we need to do anything different for it.
#19. During lunch, I had an out of body like experience. That’s really weird and will totally freak you out a bit. It wasn’t as though I was staring down at myself talking to Jon or eating. It was just like I moved out of my body and stood on the other side of my seated self. Maybe my spirit just needed to get away from the drug invasion. I’m not sure if this happens to other people or not, but I wasn’t prepared for it.
#20. I’m so thankful for the over abundance of love, prayer, and humor poured over me throughout all of this but especially today. Chemo is scary because no one can tell you how you’re going to react. No worries though, my husband and son have both checked my hair by pulling it and all of it stayed in! 🙂 A lady from church ordered us pizza and had it delivered to our door. Lots of you have checked on me in some form or fashion all day. I’m truly grateful even if I haven’t gotten back to you in a timely manner in this electronic day and age of instant gratification. Please forgive me if I somehow totally miss something. This is a crazy life I’m living right now.
I think I’ve used all my bars of energy…goodnight.
*please ignore all spelling & grammatical errors too.