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!

Monday, July 2, 2012

Post 34: How are we doing?

It's been a whole month since the last time I wrote. Where does time go? There have been days I've wanted to write. Then I don't feel well and wait for another day.  I wish I could write about something clever or witty - maybe share a story where I put a positive outlook on a crappy moment. But the truth is, we've been having some rough days here in the Klapp household. We are all tired and drained emotionally and physically. We've just been trying to live life normally. Being mommy & daddy and trying to keep things as routine as possible. But chemo has a way of reminding you of how difficult some days can be. Today I just needed to write. I don't want to save my words for the good days and make it seem like I am always strong with my chin up. If we only show ourselves at our best moments, it makes others think that we should always put on a show and wear a fake smile.... That's just not being real. I think that when we feel beat down, bruised and scarred, that's when we can relate to eachother the best. So, I wanted to share a few updates about my treatments and how we've been doing lately.

 Phillip has been amazing and has been my rock throughout everything. But he's pretty wiped out too. He started a new job a couple of months ago, and it's been going great! But with learning the ropes of a new job, taking care of me, taking me to appointments, getting my medications, cooking, cleaning, and basically taking on all of the duties of a single parent at times, he's pretty worn out. Elise is amazing. She's so much fun and growing like a weed! She was really sick last week with a virus, but she's doing well now. She's pointing and talking all the time. She's walking everywhere and giggles and laughs at everything. She's basically our angel and she's got our hearts in her hand. We never thought we could love someone so much. As for me...I'm hanging in there. I am completely drained as well. Emotionally I've been in a rough spot. I guess it's because I had a lot of hopes and goals for the summer that didn't go exactly as planned. Our summer has turned out to be a little different than expected.

I had a lot of summer goals:
1) I wanted chemo to be over - unfortunately, we're not quite there yet. I'll explain in a bit....
2) I wanted to make up for all the lost time with Elise. I wanted to be super mommy and play all day, and have loads of fun since I haven't been able to do a whole lot this past year since she's been born. 
3) I wanted to spend more time with my friends and family.
4) I wanted to work on getting stronger before my next surgery. Start excercising and feeling better. I've lost a lot of muscle during chemo treatments and I am pretty weak and worn down.
5) I wanted to get my photography business back on track, and focus on new projects for my students for the upcoming school year..
6) Big plans to reorganize my closets. Get rid of old stuff - out with the old & in with the new.
You know, the usual "I'm going to have a super productive summer" attitude :)

Well, my body said "NO - absolutely NOT!!" My body wouldn't allow me to do much more than stay put and rest, while my mind constantly races about what I want to do. It's quite frustrating and upsetting. I am the type of person who doesn't like to sit still all day. I want to get out and do things! But I have been too sick lately with additional treatments. A couple of weeks ago at my last oncologist visit we were told I will need a couple more rounds of chemo. YUCK. It was originally 6 months of chemo, but now it will be 8 months. This really bummed us out. Phillip and I were just celebrating that the hard part was finally over!! We walked into our past appointment with high hopes that I was finished and could schedule my next surgery. I had plans to spend the months of July and August healing and getting stronger, being super know - doing all the stuff listed above.

That would have been too easy. Since I have had major side effects from my chemo treatments, they had to give me some longer breaks in between rounds so I could heal. My hand & foot syndrome was causing the most problems. After each round the whole sole of my foot would blister and bubble up. Then it would all peel and I would lose thick layers of skin on the bottom of my feet. It has been pretty painful and has left me unable to walk some days. But to look on the bright side, I have baby smooth foot soles! It's like getting a deep chemical peel pedicure once a month. (I am sooo lying right now. It hurts!!) When my feet do this, my doctors won't let me start another round until they completely heal. This gets me behind on my treatments. They also had to lower my dose...again. I metabolize this stuff in a weird way and I am SUPER sensitive to the drug. So since I had a longer break between some of the rounds and a dose lowering, they said I have to do 8 months of treatments instead of 6.  Not happy. Could be worse though. At least I am here with a great prognosis. And, I still have my hair. That is good. My hair has changed color and texture. It is definitely thinner too. But at least I still have it. The chemo drug Xeloda that I take is pretty good about letting you keep your hair. The other side effects, well, they are horrible. The stomach issues, skin problems and fatigue are no joke. But I am learning how to deal with them as they come. It is what it is at the moment.....

I just finished my 7th month /round and I am beyond drained. Emotionally and physically. It's definitely been getting harder with each round. I have been experiencing a lot of body and joint pain. Lots of nausea, appetite problems, weight loss and extreme fatigue. This fatigue is like nothing I have ever experienced. Getting a gallon of milk out of the fridge to make Elise a bottle feels like I am lifting a ton and running a marathon. I can't carry Elise across the house. Thank goodness she is walking. We have been sending her to school/ daycare during the day because I do not have the strength to take care of her by myself. This hurts my heart more than anything. But, I know she LOVES school though and she gets super excited when she sees her friends.

Since I have finished the 7th round, I will have about a week off before I start my 8th round. We are planning to go to the beach with my mom and sister and her husband to have a little down time. This will be our first trip to play at the beach since Phillip and I went on our honeymoon. We can't wait to see how Elise will react to the sand and water! So we will have some time to rest and hopefully re-coop a little bit before this last round. I will then will have a visit to Shands on the 11th with my Oncologist and my surgeon, and then I will start my last treatment.

I will keep everybody updated after my appointment. So as of right now we are just living life and trying to savor every good moment. Happy 4th of July everyone! Lots of love to you all.