Walking along the beach, biking along the coast, coffee dates with friends, shopping, playing a hilarious Taboo-like game with friends, these are a few of my favorite things. (Thanks for the inspiration Maria!) But when the dog bites, it really bites with chemo. Okay, enough of the sound of music analogy, but you know what I mean. I have honestly had a really rough past couple of weeks and I would love your prayers for peace, joy and perseverance. As I was writing my check-in email with my doctor today, I thought, maybe I should just copy and paste this thing to the blog so that you can get a feel for how I communicate with my lovely MD. This email is much more personal and emotional than normal- because well, that's just who I am and where I'm at right now.
Hi Dr. Cho-Phan,
How are you? I'm not sure where to start with how how this round of chemo has been on me. I want to stay positive and be a fighter, but this round has really torn me down emotionally, mainly because of the nausea. The day of the infusion (2 weeks ago tomorrow) was pretty horrible. I was doing fine until the Oxaliplatin started in the IV, and then almost immediately I had this sick, nauseas feeling and it literally felt like a cold poison was pulsing through my body. I actually had tears rolling down my face for most of the 3 hours. 🙁 The cold on my arm (at my IV location) was so bad that thinking about it or looking at it made me more nauseas, and this was the first time that I actaully thought I might throw-up in the ITA. Though the nausea was obviously worse then the past infusions I thought that maybe this was because I had had a break from the chemo and my body was having to re-adjust to the "assault" of chemo on my system However the nausea that I have continued to experience throughout the past two weeks has made me curious. I was also wondering if the healing in my colon and liver effected how much nausea I experienced? What are you thoughts on this? (more…)
Back on Chemo Today
Josh and I had mixed emotions as we drove back to Stanford for my post-opp appointments on Thursday. It felt so wonderful to be on the other side of surgery, and that I could actually walk from the parking lot to the Cancer Center without a wheelchair! On the other hand it was weird to be back because it's a blaring reminder that just 2 and 1/2 weeks ago I was a patient in the hospital, longingly watching people maneuver ever so easily through their daily routines on the main walking thorough-faire. I got to walk down that path on Thursday and it was fantastic to be out in the fresh air and "free" from my hospital room.
See ya E-Wing! Amy celebrating while making a break for it after her second hospital stay.
Speaking of two weeks, WOW, what a difference they make in the world of healing! I can not tell you how much better I feel. I am actually feeling like a real person again! Woo Hoo! As I gain a little more perspective through this journey, I'm realizing that it was really hard for me to know what to expect with surgery since I have never had any experience with "more than baby delivery" hospital stays. I knew that I would need to lay low and rest for six weeks, but I guess it was just hard to know what it would actually feel like until I was in the middle of it.
It's hard to prepare for how cancer/chemo/surgery/post surgery healing will effect you emotionally. I now realize that this healing process is not only for my physical body, but it is a type of grieving/emotional healing process as well. No matter how positive I'd like to be, I can't change the fact that it is really hard not to be able to do the things that you really want to do after surgery. I first experienced this, "it's hard not to be able to do my own life" feeling with my chemo treatments because of little things like not being able to chase my kids, or even care for them. It was also a bit of a shock to lose some brain power (they call this "chemo-brain") which means that I have been losing my keys more often and don't always quite have the word that I want to say on the tip of my tongue. If you know me well, you know that this can be a really frustrating thing to deal with sometimes because I love people and I love to talk. It's weird and a little scary not to be able to be as quick with every word. I've tried to embrace this fuzzy brain feeling (very similar to pregnancy-brain for all of you who have had a taste of that!) and I feel like I've dealt with it pretty well. Unfortunately, this past Thursday I found out more that made this side-effect hard to swallow. As I chatted with my chemo doctor, she mentioned that chemo-brain might not fully go away after chemo—ever. Whoa. This was a hard thing to hear because everything that I had read and heard before that was that my brain would re-sharpen about a year after chemo. Thankfully this is not 100%, but what really gives me hope is that we have an amazingly powerful and compassionate God who knows exactly what I need to love well and live my life to the fullest for Him. No matter how hard-core and nasty this chemo might be on my brain, I know that God is bigger and he can protect me from long-term side effects. Thank you so much for walking this road with me and especially for interceding and lifting me up to Jesus, THE HEALER. I would love your prayer that my chemo-brain would not be permanent.
It takes just six weeks for this lobe to grow back. Amazing!
The rest of my post-operation appointments and conversations went really well. My colon surgeon checked out my incisions and told me that they are healing beautifully and my oncologist confirmed that my blood counts are excellent. I had known that I would have about three more months of chemo after surgery (4 more 3-week cycles) so we talked about starting that process as soon as possible. Even though the surgery had fantastic results, the protocol for my stage of colon cancer is always more chemo after surgery to get any microscopic cancer cells that might be looming in my body. I know how important this is in the fight to not have it come back, but it is also the first time that I have had thoughts that this chemo is semi-optional (and is there any way I can do without it?!) But then I think of what we have already been through, and I think of Josh and my boys and the wonderful life that God has given me and I know that it would be unwise not to do everything in my power to eradicate any tiny cancer cells. Here is the approximate treatment game-plan that we discussed:
Today (Monday 2/6) Chemo infusion #1: (I am typing this in my infusion room!)
Wednesday (2/29) Chemo infusion #2
Wednesday (3/21) Chemo infusion #3
Wednesday (4/11) LAST CHEMO!! Which means by April 25th I will be chemo free if all goes well.
The last part of this treatment plan is a small surgery that I will have to have in late May. This second surgery was not expected, and therefore a big bummer for us. Because of the location of my colon tumor, my surgeon found that he will need to do one more quick corrective surgery once I am done with chemo.
The most exciting part of this plan is that I should be all done with everything in time for summer—my favorite season! I love summer in Mount Hermon and Santa Cruz. I can't wait for the swim lessons, beach days, late nights, the fun MH summer staff vibe and for the SUNSHINE. BTW, all of you out-of-town-ers are more than welcome to come visit!
I have so much more to share with you, but for now I will leave you with a ((BIG HUG)) and a few prayer requests.
Thank you so much for praying for...
Strength and a joyful outlook to get through the side effects of this chemo round. The biggest offenders are the nausea, cold-sensitivity/tingling and also the peeling of my feet!
Also, I am going to try acupuncture for the nausea this time, so I'd love prayer for its effectiveness
Protection from radiation, and it's long-term/unknown effects, as I get my CT scans. I have one today at 2pm.
Healing for Grandma Penny. (Josh's mom) After caring whole-heartedly for the boys in the month of January, she went home about a week ago and found out that she has pneumonia. Please pray for complete healing, rest and renewal.
Strength, joy, hope and perseverance for Josh and our families too, but especially Josh as he has to deal with so much every day.
Wisdom, patience and insight for Josh and I as we raise our oh-so-active, strong-willed, impressionable, precious boys.
If at First You Don't Succeed...
go back to the hospital and try, try again!
Today, Thursday, 1/19 I am officially 15 days post-surgery. I have been back at Stanford in my same old E3 wing and now J and I feel like we are defintely on a first-name basis with all of the great staff here. I've been taking it easy, mainly just taking walks around the hospital, stretching and being really careful about what I add back into my diet each day. I am so happy to be narcotic-free for 3 days now, but still very happy for the invention of Tylenol and IB Profin. The deep pain for my surgery is slowly but surely subsiding, and Josh says he can barely keep up with my walking pace now. (Well, maybe I'm exaggerating just a tad.) Although the docs and nurses are telling me that I look much better, when I look in the mirror, I still see my oversized hospital gown and clashing pj pants. I'm not sure when I'll be able to dress up again, but that desire is just me being a girl and I know that it is not important in the scheme of things. I've got to admit, though, it is harder than I ever imagined to be a recovering patient who really can't do things that it seems like everyone else can do. I have never been so aware of what a privilege it is to walk fast and even run down a hall. Never really thought about how wonderful it is to drink water. I have never wanted a salad or grapes or strawberries more than I do now that I can't have them.
Right now we are pondering making the leap to become totally unplugged (medically speaking, of course) and to head back home. I can't tell you how much I miss our two precious boys. It has been more difficult being away from them this time then initially because I had planned on being gone for the surgery, not for a relapse. The only thing that is holding us back is a sharp cramp in my side. Since it was horrible cramping that brought be back here, we just want to make sure we are in the clear, but at the same time we are caught realizing that we can't wait here, worrying that something will go wrong forever. If you read this between 2:45 and 5pm today can you please pray for wisdom and for this cramp to go away? Thank you!
I wanted to leave you with the post that I began last Saturday when I had just come back home for the first time. I didn't get a chance to finish it and send it out then, but I still wanted to share it with you. I'm praying and hoping that our second return home will be just as sweet.
"MOMMMMYYYYY! MOMMY'S HOME!" Were the first words that I got to hear as I pulled into our driveway on Thursday evening after a bumpy ride home from Stanford. I immediately saw an adorable hand-painted," Welcome Home Mommy" sign on the door but no Eli or Brenden. Where were those precious voices coming from? As I eased my car door open, the boys came running from the house that MH is letting our family use across the street (Or "Huck," as we affectionally call it for it's full name Huckleberry). Ah, what a fabulous moment. I just wished that I could have picked Eli and Brenden up and twirled them around, with a big bear hug, but luckily Eli was happy just to pull my hand and say "Come, on Mommy, I have something to show you." As he brought me through the sparkling clean house, it was hard to believe that 8 days before I had left there feeling pretty strong. E lead me to some flowers and beautiful balloons, which continued to make the moment so special. Here is where I must give a shout out to some truly sacrifical people who were so amazing with the boys while Josh and I were at the hospital. These are the people that made my 8 days away so much more comforting.
That day my Aunt Annette and Mary both took the boys for some fun adventures so that my dear mother-in-law could have some time "off" after watching the kids with her brother, (Josh's Uncle Mark aka "Uncle Hum") for the entire week!! Uncle Hum was such a gift to us and the boys, because he is amazing with kids and actually sacrificed time away from his wife and kids at home in OR to help be Grandma Penny's sidekick. WOW. Thanks again to his amazing wife Joey and fantastic kids- I so hope that we can return the favor sometime soon! I also have to say thanks so much to my Aunt Mary for being so willing and ready to help anytime, as well as my Uncle Guy who continues to stop by and beautify our porch with his amazing flower pots. Our dear friend Carol (who has been scheduding people for meals and other needs) also came by to help/relieve Grandma Penny and Uncle Hum by entertaining the boys on many occasians. You might be wondering where my mom and dad were during this process- well they had the best job of all. 🙂 They were there with Josh and I at the hospital everyday. They were my cheerleading team (along with my wonderful sister Nicole and and bro-in-law Jer). My parents were there to help with just about anything; from washing my hair, reading to me, watching movies with me and bringing me any food that possibly sounded appetizing. Josh and my parents rallied me to keep up with my oh-so painful, very slow walks around my hospital floor. These walks eventually turned into walks down to 2 beautiful garden areas that were so helpful for me and my NEED to be outside. 🙂 We shared many scary, unknown, encouraging, gross, interesting celebratory and REAL LIFE moments together. Thanks Mom and Dad.
My parents encouraged Josh and I through the many decisions and were just the eyes and ears for anything that my very fuzzy brain and Josh's stressed and overwhelmed brain might have missed.
Thank you so much for your encouragement and prayers. I'm feeling like I need them more than ever as I deal with the changes and challenges of my post-surgery self.
I am going to pray that God's words will seep deep into my heart and yours.
"I would have been without hope if I had not believed that I would see the loving-kindness of the Lord in the land of the living. Wait for the Lord. Be strong. Let your heart be strong. Yes, wait for the Lord." Psalm 27:13-14 (New Life Version)
"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." Romans 15:13 (NIV)