Wednesday, July 18, 2012

Post 35: What's next?

 So a lot has been going on lately! We were able to take our short trip to the beach. That was awesome! I was so nervous about getting into the salt water with my ostomy, but I did a lot of research and found a forum about triathletes with ostomies. Well, if they can swim in a triathlon with one,  then I should have no problems playing in the water! I was excited! And I found a nice one-piece swimsuit that hid everything well :) I was pretty wiped out since I had just finished a round of chemo, but we still enjoyed our trip with family.

Unfortunately this week I am back on the yucky chemo meds. To make things a little more interesting, Elise is home with me and has Hand, Foot, and Mouth disease. I have been sending her to daycare because I am too tired during chemo to keep her all day. But she ended up getting this virus. Not fun. But we are doing ok. I am enjoying my time with her and she is really snuggly since she's not feeling well. Poor baby. But snuggling is nice.

 Also, last Wednesday  Phillip and I spent a long day in Gainesville. We had an oncology appointment first, then we met with my surgeon to discuss some things and to get a clearer plan of what comes next.

Right now I am in the middle of my 8th, and (fingers crossed) LAST round of chemo. I will be taking the yucky stuff for 14 days (July11-27th) and hopefully will be done! I am excited to get this finished before school starts back.  After all chemo is completed, we will go back to Shands on July 30th to get another scan. This is the big scan. The one that will tell us if everything is good to go for surgery. We are praying that everything will look great and we can proceed as planned.

After this scan, we will go back to Gainesville on August 6th to have "the talk" with my Oncologist to get the results from the scan.

If everything is good, I will have a nice little rest for a few weeks to recover from chemo. I am SO EXCITED about this and can't wait to get some of my energy back!!! I know it will take time. Some friends of mine who have gone through chemo say it can even take years to be totally normal again. But even after being off of my chemo meds for  as few as 10 days I can feel a huge difference. So any regain in energy and strength will make me very happy.

Before my second surgery - The Take Down - we will travel back to Shands on September 17th to have a scope done to take a good look at the inside of my J-Pouch that was constructed from my small intestine. They will check to make sure everything looks like it has healed normally. This J-Pouch will act as my new colon since I don't have one anymore. So we have to make sure it's perfect and ready to take on it's new role.

On September 26th they will do a type of a "stress test" on my J-Pouch to make sure there are no leaks. This is the test I am pretty freaked out about. It scares me to death when they describe it! It will consist of a barium enema and they will put a balloon inside and stretch it out, then put the barium ink up my rear end to do a CT scan to make sure there are no leaks. EEEK!! It REALLY freaks me out. I will be taking some happy pills that day for sure to get through that test. It's funny though because I have been through so much worse, and that particular test is the one that freaks me out the most. I'm not really sure what to say to the nurses and the technician while they do this to me? how has your day been? Done a lot of these today? Very awkward!

My surgeon said that if all my scans and tests are good, I can have my takedown surgery at the end of November. This second surgery will be nothing like my first surgery. The first one was like 8 hours, I think. Recovery was a Doozey! Not going to lie - it was HARD! This second surgery should take a few hours and the recovery time is a fraction of the time that the first surgery required. That is good news!

 I have had my ostomy now since October and it's going to be weird going back to using the bathroom like "normal people" again. (Well sort of normal) I am definitely excited about getting rid of this bag hanging off my stomach - that's a no brainer! However, I will miss the predictability of it. Right now I don't have to run to the restroom since I have a bag. I just empty it when I need to. It's kind of convenient. So what's a few more months of having an ostomy? I never thought I would say this, but life is still pretty great with it. Once you get it right, there are times when I forget it is there. I used to think about it every minute, now I will go hours without thinking of it.

November will be a great time to have my takedown surgery. My sister-in-law is getting married in early November and I want to be able to travel. If I have my surgery before then, I don't know how I will be or if I will be able to make the car ride up to north GA. Also by having the surgery in November I will have Thanksgiving and Christmas break to recover so I won't have to miss to many days of work.

So, this Christmas - if all goes well, I will get to look at my bare stomach for the first time in 14 months. Pretty exciting. The downfall is I will basically have to re-train myself how to go to the bathroom. Not very glamorous and downright embarrassing. But by now, all embarrassment has been thrown out the window. I talk about poop all day with doctors like we chit chat about the weather.

So that's what is coming up over the next few months. We have a LONG road ahead of us. The human body is truly amazing. I still can't believe they removed my entire colon and made a new pouch with my small intestine.  It's just crazy. Sometimes I am amazed with my ostomy too. The human body is extremely resilient and can function and adapt to some crazy situations. I'm proud of my body for all the beatings it's taken lately. But it constantly heals and it's just a miracle.
With my new J-Pouch, the doctors say it could take between 12-24 months to get my J-Pouch fully functioning. I will start with very frequent bowel movements at first (kind of like my ulcerative colitis days) then over the months it should slow down.

So there ya go...It's good to have a clearer picture of what lies ahead. We still have a long way to go, but I have to remember to look at how far we've come! Thanks for everyone's continued thoughts and prayers. I am looking forward to being finished with chemo soon and starting a new school year!

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