Friday started early with the time and frustration of dealing with the steadily worsening bag that has become routine for Amy over the past few months. Then began the rhythms of checking in to the hospital for surgery at Stanford, that is by no means routine, but feels familiar.
Compared to the last surgery, this one seemed like mear seconds of nervous waiting before Dr. Shelton came out to tell us that everything had gone well and she was in recovery. Yay! We did spend the rest of the day sneaking in one at a time to see her in a very busy recovery room because there were no available beds in the E3 wing. E3 is the same wing and many of the same staff that cared for us the thirteen days in January, so even that seems as much like home as a hospital ever will. All that to say, Amy has progressed according to plan and any expectations and will likely be going home tomorrow. Big hurray and praises!
Amy & Ashlee
Eli, Brenden, Gramma Penny and Carol are making the trek to visit us on Mother's day. It's a perfect gift. The've done well, no doubt spoiled with trips to the pool and plenty of mac and cheese. We miss them desparately, but are overjoyed and grateful to have them doted on by grandmas and precious friends.
Gramma, we need a bigger pool.
Our dear sister Nicole, and bro-in-law Jeremee also sacrificed a fancy Mother's Day to come and visit us at the hospital with their wonderful kiddos, Ashlee and Blake. The whole gang celebrated together on the outside deck of the hospital, Amy-Style, with frozen yogurt enjoyed by all. After 3 crazy boys pumped up on sugar, chased each other around the hospital a bit and got to play with Mom's hospital bed it was time for them to head home.
We'll be right behind them.
10 More Days
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)