Once again I can't believe that I haven't had a chance to update this blog since my last infusion. Funny how it seems to take a waiting room at Stanford to give me enough time to sit down and write! So I have some exciting news, yes I am DONE WITH CHEMO which is amazing, but honestly, this reality it hasn't really sunken in yet. I think that I'm so used to having the week off after chemo before the next that it just feels like this is my week off before another dose..but it is not, I'm done—come on silly brain, it's time to celebrate!
So what is the good news? I have 10 more days until my last surgery! Woo Hoo! You might be wondering how surgery/ being in the hospital can be good. Well I think that it is finally time for me to share one of the most humbling, humiliating and utterly human parts of this journey. It all goes back to my surgery on January 4, 2012. When I came to, and began coming out from under my drug-induced fog, I realized that something was not normal about my stomach area. Amid the tubes and IVs hooked up, I found that there was this crazy bag taped to my stomach right next to my belly button. I remember not really caring about this new appendage until about 4–5 days after surgery, which shows you what a fog I was really in. When I asked my surgeon about this new contraption he explained that because my surgery went so long, and because of all of the reconnecting that they had to do with my unique and oh-so-lovely colon, He felt that it was best to give me a temporary ileostomy. Now, I would not be one bit surprised if you are like me and many people of my generation that have absolutely no idea what this ileostomy thing is. Well, if you are really interested—you know what to do, Google it, right?! That's what we did! Despitewhat Google has to say, here is the quick low-down from someone who has experienced this humbling, embarrassing, life altering, bathroom hogging, anatomically amazing procedure that can be done to the human body. Basically the surgeon pulled a piece of my small intestines (the ileous) out of my body so that it pops out of my abdomen, ready to poor out liquid waste. Yes, it is true, all of my (now liquid) poop has come out of this little hole for the past 4 months. So this is where that crazy bag that is taped to my stomach comes in, you can guess what it is there for and how fun it is to have this attached to your skin, 24/7.
Back to my hospital stay in January. As I started experiencing all of the challenges of this bag I start asking my surgeon why he could have possibly done this to me and how soon he would be able to reverse it. He calmly told me that it was for my safety and that it would help give my newly reconnected colon time to heal. He said that if they had not done it there was the risk of my resected colon leaking gross stuff into my body and they were not willing to take that risk. "Okay," I said, "I understand." Inwardly I accepted that this was necessary, even though I was pretty depressed about how I would live with this thing for the next few months without dying of embarrassment or self-disgust. When I asked him how soon I could get it reversed, I'll never forgot what he said. In his kind but matter-of-fact voice he said, "Well I could reverse it tomorrow, but I wouldn't recommend it." He then explained that it would be best to give my overworked colon rest and that it would be unwise to do the reverse surgery until I was done with my chemotherapy. Alas, when I left the hospital in January I knew that I would get a chance to reconnect with all of the fabulous nurses that cared for me because I told them, "I get to have this thing reversed, so I'll see you in a few months!"
It has been quite the journey. I won't go into all of the horror stories, but you can probably guess some of the fun times that I have been through since January. I know that I would have felt so much more depression and pessimism if it were not for my amazing husband, Josh. He has sat up with me in the middle of the night so many times, just being there for me as I've experienced pain, sleeplessness and frustration with my condition. I thank the Lord that I married a scientific guy because when I ask he says that it doesn't gross him out, it is just a medical necessity to him. I often respond, "but it grosses ME out," and he just says, "one more month", "two more weeks" and now "just ten more days."
So there you have it. My good news= reversed ileostomy. No more bag! No more...(I'll spare you all of the details!) So, why share this ileostomy lesson? I guess I just decided it was time for a few reasons:
No matter how much I'd like to avoid it, I have to deal with poop.
Now that it's time for my surgery, I'd love your prayers for wisdom, understanding and steady hands for the surgeons and anesthesiologists.
I'd also love your prayers for a smooth, and fast recovery. Even though this surgery will only be a one hour procedure (nothing compared to my 11 hour surgery in January), I will have to stay in the hospital for 3–5 days just to make sure that my digestive track can start working normally again.
I want to encourage, support and cheer on anyone who was had to deal with crazy body-altering issues. As I have walked though all of this I have felt a growing passion to use my experience to encourage others on their journeys.
I prefer honesty and openness in every area of my life. That's just who I am, thank you for loving me through it all!
Last Chemo Infusion Tonight!
I can't believe that I am actually typing the exciting yet unfamiliar words—LAST CHEMO TONIGHT! It has been such a crazy journey getting to this point and yet I don't feel like the journey is totally over. God has been so faithful to provide every step of the way, right now as I head into 2–3 weeks of rough side-effects I need to remember that he will continue to be faithful to help me every day.
Josh and I really had to let go of any sense of schedule or control as we headed into my appointments today (although it's not like we have felt like we have any control over anything lately!) We did have the opportunity to ask many of you to pray for wisdom and discernment for our wonderful doctor and I know that the Lord gave that to her as we met with her today. Here is the back story: When I emailed my doctor last week about my side effects, she wrote back and told me that she was considering not having me complete my last round of chemo. She was concerned with the long term side effects that I have been experiencing. Most concerning are my tingly fingers and toes and extreme cold sensitivity; I had to wear mittens around the house and some of you Mount Hermon friends even got to see me bust out my skiing gloves, that upon first glance, might have looked like a way to protect myself from my two little ninjas! I also have been fighting peeling feet and hands and a few other side effects that make me wonder if this is really my body or if I am wearing some kind of crazy body suit like Robin Williams wore in Mrs. Doubtfire.
So we had no idea what Dr. Cho Phan was going to prescribe today. I think I had hopes that I really wouldn't need the last round of chemo, but those were always coupled with a trace of fear that I might regret not doing everything possible to get any microscopic cells. It is a complicated process to figure out how much chemo (read poison) to take because you always have to walk the line between the cancer eradicating effects and the hard-core side effects that could cause problems in future. I was so thankful that I did not have to shoulder this decision. Josh and I continue to rest in the fact that we have a relationship with Jesus who is all-knowing and all-powerful. Thank you so much to those of you who prayed that God would infuse my doctor with wisdom today, I am confident that he did and that we are taking the best course of action.
So right now (at 6:45pm on Wed. 4/11) I am sitting in what is called the ITA, getting my last infusion of Oxaliplatin. My doctor decided to reduce my dose of both of my chemotherapies so that they are still effective, but will hopefully not bring on as many side effects. I also found out that I can have my last, minor surgery in around 4 weeks! (sometime around May 10th) I am the most excited about this quick surgery because after that I will really be ALL DONE with this treatment plan. Watch out world, here I come!
I'm getting more and more tired and nauseous as I write this so I'd better say TTFN, but here are a few quick prayer requests:
For minimal side-effects tonight and in the next 2–3 weeks, specifically that I will be able to use my fingers
That we can easily schedule a surgery date that works well for everyone involved
That my cancer will NEVER come back in any form, and that I won't live in fear of this (I'll write more on this next time, but it is the new faith-journey that I will be walking with the Lord)
Chemo No.7—Only one more after today!
As I have thought and prayed about this day (chemo No.7), I've felt more at ease about what I might experience. Even though I'm in no way excited about getting infused with chemo today, it seems a little more bearable than it did the last time I posted. I know that this is a direct result of your prayers for comfort, peace and perseverance as I face these last, most difficult rounds of chemo. The familiar phrases of Thank You, Muchas Gracias, Merci, Danke Schoen do not even come close to expressing how thankful I am for your support for our family throughout these trying months.
Good News/ Things we are Thanking Jesus For!!!
I only have 2 rounds of chemo left!
After todays' infusion (+ my 2-weeks of chemo pills) I will only have one more round which is currently scheduled for April 11. Thank you JESUS for showing your awesome power and compassion as you have carried me through each of these. The ways that people have held us up in prayer serioulsy remind me of the way that Aaron and Hur supported Moses when God asked Moses to hold up his staff (in faith) throughout an entire battle against the Amaleks. Here is a quick look at this amazing partnership and faith that Moses, Aaron and Hur expierenced that day as Joshua was down on the ground fighting the battle.
I now have a CEA level of 2!
If you look back to some of our original posts you'll see that I was diagnosed with CEA that was the highest our doctors had ever seen. It is now 2! (Carcinoembryonic antigen (CEA) is one of the markers used to follow patients with colorectal cancer during and after treatment. In this way CEA levels are used to see if the cancer is responding to treatment or to see if it has come back after treatment. People who do not have cancer have CEAs of 1-4.)
While the people of Israel were still at Rephidim, the warriors of Amalek attacked them. Moses commanded Joshua, “Choose some men to go out and fight the army of Amalek for us. Tomorrow, I will stand at the top of the hill, holding the staff of God in my hand.”
So Joshua did what Moses had commanded and fought the army of Amalek. Meanwhile, Moses, Aaron, and Hur climbed to the top of a nearby hill. As long as Moses held up the staff in his hand, the Israelites had the advantage. But whenever he dropped his hand, the Amalekites gained the advantage.* Moses’ arms soon became so tired he could no longer hold them up.**So Aaron and Hur found a stone for him to sit on. Then they stood on each side of Moses, holding up his hands. So his hands held steady until sunset.*** As a result, Joshua overwhelmed the army of Amalek in battle.*
Exodus 17: 8–13 (NLT)
So maybe it's the elementary teacher in me, but I love to differentiate things with COLOR!I'm a visual learner, and it just seems to help me to find the nuggets that I'm looking to learn from while I'm reading. So, please excuse my color-coded verses if you are a graphic designer like my dear artistic husband. 🙂 I just love that God used this simple physical arm-strength lesson to show us how much we need our friends, and how when we just obey his simple commands, even when they seem crazy, he will come through and take care of us. I'm sure that Moses thought that it was a little crazy, silly, even unnecessary for him to hold up the staff in order for his army to keep winning. But I love how this is a simple hands-on example of our need for God. By holding up his staff, he was actually giving God the glory for the success in battle. It was a simple thing for the soldiers on the ground to look up and see, and I can only imagine how it wowed them as they understood what was happening, and grew their view and understanding of God's personal provision for them.
Our Arms are Tired**You are our "Aarons" and "Hurs"!***
You are the ones holding up our hands:
Your belief in our all-powerful, HEALING GOD & your reminders that he has a plan for us
Your continual prayers on our behalf (we are especially thankful for these when we realize that we are too overwhelmed, tired or fuzzy-brained to pray)
Encouraging cards and verses
Friends cleaning our house, walking our dog
Friends coming to visit me at the hospital & at home while I'm nauseous
Financial gifts that blow us away and humble us
Friends taking Josh out for FUN things like bike rides, coffee tasting and a good beer.
Mount Hermon's support of Josh taking off time to be with me through surgery and chemo
MH's amazingly generous offer to let Josh's mom stay in the cabin across the street for free so she can care for our kids
My parents & Josh's mom's love and support through childcare, gifts, sacrificing their entire schedules & prayer.
Our precious Vintage Faith staff & volunteer family carrying The Vintage Kids Ministry while I have not had the strength
Friends and family offering to watch our boys so that we can get out on a date!
I know that these parallels are not exact, but this story truly reminded me of our experience with you all, OUR AMAZING COMMUNITY. And just as The Israelites were victorious to "overwhelm the army of Amalek," not by any great military power, but by simple faith, I believe that God is transforming our battle with cancer into a victory over this disease and a crazy platform to share his love.