Wednesday, September 19, 2012

Post 37: A year ago today.

We carry our phones around with us everywhere now days, but this morning a little reminder popped up on the screen. A year ago today I wrote myself a note. I put a little alarm on it so it would surprise me a year later - today.

I am so grateful for today.

 Of course, I don't need a reminder to remember that day, but I guess I knew myself enough to know I would appreciate this little note down the road. You see, I'm a scheduler and I like to have things written down, in my little calendar and planned. But OH, how our life did not go as planned. We have definitely had some bumps in the road and some challenges this past year. But even though we feel a little beaten and bruised, we have more love in our hearts than we ever thought was possible. I now understand the saying, "life is what happens while you are making other plans." How true it is!!

 Really this little note couldn't have come at a better time because I've been having a rough couple of weeks. When I saw the little notification on my i phone calendar, it made me smile because I think of how far we've come. We still have a long way to go, but we have faith that the hardest part is behind us. Lately we've been so busy with appointments and procedures. It's been a challenging few weeks. Even though I've been finished with chemo for over 7 weeks and I would like to say I feel like myself again,  I know it will take some more time. The new school year is exhausting, but invigorating. I love being back in a normal routine. I took for granted the hustle and bustle of getting our little girl dressed for school, her crawling in my lap while I put on makeup, and kissing Phillip goodbye for the day as we go to work. I love feeling that sense of routine and normalcy again. I am struggling each day with energy levels, but I can feel that I am getting stronger every day. I can do more today than I could last month, so feeling this progress makes me happy! Phillip has been pretty busy with work and he still has a lot on his plate with all of this, but I can see that he's able to breathe more, smile more, and we laugh together more. We have been able to enjoy getting out and doing more things as a family and that makes us very happy.

So where were we a year ago today? Phillip was sitting nervously in a waiting room as I was laying on an examination table in a hospital gown. I was about to have a procedure done, and after that we would hear the words "you have cancer." That was a day we will never forget. I am so grateful today to say I am feeling well and typing this after a long day of teaching - cancer free. I am about to have my second surgery in November to put me all back together. We never thought we would get here. What a journey this has been!

A year ago today, we had no idea what was ahead of us or what this new journey would entail. A nurse was holding my hand and she gently brushed my hair out of my face. She was smiling, trying to comfort me and distract me by speaking softly and talking about my little girl. I needed this nurse by my side desperately, and she never let go of my hand - not even once.  The walls of the room were covered with giant TV monitors. I was scared to death. Praying. I just remember the smells - you know those weird hospital smells, and the sound of the heart monitors beeping. The doctors were talking quietly about what they were about to look for during the procedure. I was having an endoscopic ultrasound done to see how deep the cancer had spread, and even get a verification that it actually was cancer & what stage I had. This procedure was kind of like a colonoscopy but with an ultrasound device on the end of it. One of the doctors kept asking me if I was sure I didn't want to be sedated? I was afraid of being in pain, but I wanted to do the procedure awake so I could understand what was going on. I wanted to see this ugly tumor inside of me and I needed to hear the words from the doctor while I was awake and alert - not doped up with meds. There were about 3 doctors around me, plus an anesthesiologist near by just in case I couldn't handle the procedure awake. Physically it wasn't that bad - extremely unpleasant, yes - but how quickly we forget pain (thankfully). The emotional part of the day was the hardest part.  After the procedure was over, my doctor, who was an amazing specialist came around and sat next to me. I knew what he was going to say even before the words came out of his mouth. I was laying there on my side and I could see the ugly tumor on the TV screens and knew it wasn't supposed to be in my body. He held my hand and told me that everything was going to be ok, but I did in fact have cancer. Those words were tough to swallow. I had seen the tumor before during other scopes, but not this clearly. And not with an ultrasound device. I was a surreal experience that is so clearly etched into my memory.

Even though it was one of the worst moments of my life, it was also a moment that I will be forever grateful for. The tumor was found, we now knew it hadn't spread, I was in good hands with my doctors, and there was a plan to GET IT OUT. Just in time. I thanked God over and over for finding it when we did. The doctors told me if I would have waited even 6 months longer the tumor would have burst through my colon wall and spread to my lymph nodes or to other organs. You can read more about that day HERE as I wrote about the next day. I didn't quite know what was going to happen next, but WOW, how our life has changed. It's weird for me going back and reading my thoughts and feelings from a year ago, but I'm really happy I decided to write about it. When I started writing this journal/blog I couldn't imagine the day when I could go back and it would all just be a memory. It's truly amazing how fast time has gone by. I am so grateful to be where we are today. I pray that I will live to be an old lady and this will all just be a story Phillip and I can tell to our grandchildren someday.

Again, we just want to thank everyone for all of your thoughts, prayers & support. Today is a good day :)
 I love you all!

Another post to play catch up......

I didn't get to write about my past couple of outpatient procedures I've had in the past couple of weeks, so I just wanted to add this post at the end to keep everyone updated. Sorry if this is kind of long winded. I'm just happy and felt like writing today!

 Here's what we've been up to for the last couple of weeks....basically lots of poking around, a little humiliation, with a little twist of "discomfort" as doctors like to call it. Glad these tests are behind me! :)

Wednesday (Sept. 12) I had my pouch-o-gram.  Lets just say it um.....well, it went.  I have been warned that it would be a bit uncomfortable and awkward. Calling the procedure uncomfortable is an understatement. I'll explain what in the world a pouch-o-gram is in a minute. 

 When Phillip and I checked into the reception desk at the radiology department, the receptionist asked me what procedure I was having. I said "Gastrografin Barium Enema / AKA Pouch-o-gram. She said, "Ohhh....then asked for my photo ID.  Phillip made a joke about "yeah, gotta make sure it's her so no one can sneak in there and get a free enema!" I love my husband so much. He always makes me laugh even when we are in the most awkward situations. She laughed saying "Yep! People are lined up at the door for those things!" I realized then, that I didn't quite know what I was in for. Just how bad is this going to be!?? 

Well, let's just say I'm glad it's over. I have had two outpatient procedures done in the past couple of weeks and I am exhausted. Friday the 7th, I had a scope to look inside my intestines and this was another "uncomfortable" experience. I will describe that in a minute too.

As if the procedures themselves are not awkward enough, the conversations that always come with my doctors visits aren't the most enjoyable chats either. Usually at the beginning of every doctors visit, ER trip....basically anyone I speak to who is not my surgeon or oncologist (and doesn't have a full understanding of what a J-Pouch is) I have to explain everything (On a side note: I just want to say how grateful I am that one of my best friends, Brandy, is a nurse practitioner. If I have a general doctors appointment I go to her so I don't have to deal with anyone else. She understands all the details of what's been going on with me, so I get to skip these conversations.)

First, the radiology techs / nurses / doctors come in. Most of the time they can't quite grasp why I am there and look at my records a bit puzzled.  

They ask "So, what surgery did you have done?"

"I had a J-Pouch surgery or what's called an ileal pouch-anal anastomosis."

"Hmm...OK" looking at chart......long pause.

Not seeing the light bulb go off , " Basically they removed my colon and created a new internal pouch with my small intestines that will sort of serve as my new colon

There's the light bulb moment! "OH! OK! So then what is the surgery you are having soon and what procedure are you having done today?"

 Hmm. I thought they were supposed to know that, but  maybe they are just checking to see if I know what I am having done??? I say "They are going to reconnect my small intestines so I don't have to have a bag anymore." Pointing to my stomach."I have an ileostomy. Today I will be having..." - insert name of procedure here.

Then we have a brief conversation about how I had Ulcerative colitis for 15 years, had colon cancer and why I had the surgery. Did chemo, yada, yada......Then I get the whole "Oh, I'm so sorry. You are so young!" Then I pray they won't tell me a story about someone they knew who had colon cancer.

I smile politely "Yes, thank you"......etc. This is the typical conversation so I kind of have a script in my head for what to say if any shocking comments or questions are asked. 

But before anyone touches me, I now always feel this need that I better play it safe and REMIND people just one more time "I have no colon.

"You don't have a colon?" And thank goodness I said it again. It becomes clear to me that they did not listen to a word I said. As they are putting my IV in, I am getting really nervous. I start to sweat, my legs start shaking. 

"Oh, ok...well, did you do your prep for the procedure? Drink your gallon of prep / fast for 24 hours / drink or eat nothing....this scope will go in your colon...this fluid will be put in your colon......

I interrupt, "I have NO COLON. My J-Pouch is connected to my rectum and I do not have a colon anymore.  I have a bag." Pointing to my stomach. 

"Is there a portion of your colon left?. . ."

"No there is not. Its gone. I don't have a colon."

"So what do you. . ." 

"Basically my small intestines are connected to my rectum."

"Oh what?! Well, how do you.....?"

 "I have an Ileostomy - a bag attached to my stomach.....

......Crickets sound.....

By this time I want to either run out of the room (hospital gown and all), ask for someone else to talk to and get someone in there who can explain this in depth to them, or just bang my head up against the wall. I can feel my body start shaking and I feel the anxiety building. I think to myself, I wish I would have taken that Xanax before I came.....Then to make things a little more interesting, my veins won't cooperate because they have been stuck so many times. They tell me they will be back with "someone else who will give it a try to get the needle in." 

YES! PLEASE get someone else who understands what's going on. Maybe they are just as flustered as I am?

 It is pretty draining to say the least when I have these conversations with medical professionals. Occasionally, I will have people who read my records before I come in and familiarize themselves with my surgery. I like those people. My specialists are always top notch and I feel very confident when I am with them, but when I go anywhere else and see someone new, it adds a whole new element of stress to the mix.  I know they don't see a whole lot of J-Pouch patients come through, but it is more common than you think.  

Luckily the doctor who performed my Pouch-O-Gram Wednesday was top notch and her radiology tech was awesome!  They were on their game and knew exactly what to tell me to keep me calm, and kept me informed about what I would feel. They put me at ease and it really took a tremendous amount of stress off of me. Plus I popped a Xanax an hour before I got there. HA! That helped a bit too. :) 

To clarify what a Pouch-O-Gram is, it is a procedure where they insert Barium Contrast ink into my J-Pouch and then take pictures with a CT scan to see if there are any leaks or tears in the pouch. They have to do this before I have my surgery and get re-connected. We don't want any leaks in my intestines! The PA tried to be a gentle as possible and promised they would only put in as much contrast as needed. I had to get undressed, lay on my side and they inserted this rubber catheter / balloon thing into my rectum. (Yep. Awkward.) Then they filled me up with the Barium contrast. I was told to hold it in as best as I could. As soon as she started the flow of contrast, my small intestines began cramping. The cramps were definitely out of the "uncomfortable" level and well into the "painful" level.  They took lots of CT pictures and I had to roll over on my back and roll to my other side. This was interesting. The wonderful assistant held the tube in me and had a towel pushed up against it in case it leaked. It was a humbling experience to say the least. Once they were finally done (which took only 15 minutes, thank God!) they sucked the fluid out (Yep, awkward again!) and then I was able to go to the bathroom to expel the rest of the contrast.  Instantly I felt better.  The results are being sent to my surgeon, and if it shows any leaks she'll (or actually his nurse will) call to reschedule the surgery. The radiologist felt pretty confident that we are all good and they did not see any leaks. GREAT NEWS!!!!! 

As super fun as the Pouch-o-gram experience was, it was a piece of cake compared to last Friday's procedure (Sept. 7). Friday I had a Flexible sigmoid scope done to look inside my J-Pouch. This is basically like a mini colonoscopy, but since I have no colon, it goes into my Pouch. We ran in to a few complications which turned it into a torture session and left me feeling emotionally and physically drained and in quite a bit of pain during and after the procedure. My veins gave us trouble again, but after a few tries to get my IV in, the sweet nurse numbed my veins with lidocaine so it was less painful. As they were putting me to sleep, I warned the doctor and anesthesiologist who was performing the procedure that sometimes I wake up during procedures. Well, this time they couldn't get me to fall asleep. So I layed there for over 30 minutes in a lot of pain. AWAKE. I remember all of it, felt all of it, and even though I was a bit drunk off the meds I still remember the nurse holding my hand looking up at the anesthesiologist behind me. She kept asking him if he could give me more. He said he couldn't safely give me more yet. They gave me way more than someone my weight needed and I still did not fall asleep. During the procedure they found a stricture. This means the place where my J-Pouch was attached to my rectum began closing up. It was so small and only had about a 1mm opening. They had to painfully dilate / stretch it for 30 minutes using a balloon, and who knows what other kind of gadgets to make it an opening of 10mm. They had to dilate it for two reasons. If it closed up, my J-Pouch would not be able to empty stool properly after my surgery and this could lead to infections, but they also had to dilate it so they could fit the scope inside to have a look at it. Once they were able to fit the scope in the pouch, we saw that it looked great inside. I was able to watch the whole process on the TV screen. Even though I was in a lot of pain, it still was a relief to see that I had healed well from my last surgery.  Overall, the experience went well from a medical standpoint. From a patient's view, it was painful and scary. No other words for it. Thankfully once it was all over and I got in the car, I passed out. I don't even remember getting home and getting in bed. I think I slept for about 14 hours after that. I am doing much better now and not in too much pain anymore. Just a bit sore as you can imagine. Unfortunately, I will have to go back in October to have the dilation done again before my surgery. They say it will more than likely try to close back up on me. But they assured me I would get a stronger anesthesia so I won't have to go through that again. Yes please. 

So that's the fun stuff we've been up to lately! I am slowly regaining my energy and I am able to work full school days. I am still pretty wiped out at the end of the day, but I see improvements and I feel like I am slowly detoxing from chemo. I will see my oncologist in November for blood work to see how I am doing. So far so good, and everything is falling into place as we hoped.

Thanks again for all of your continued prayers. I just want to say how much I love the people I work with. A few of them have really helped me get through these past couple of weeks and helped keep me calm so I can deal with all of this anxiety while I am at work. It's hard to put on the smiley face at work when you have all of this stuff running through your head. But they have really been looking out for me and giving me lots of encouragement. My mom has been so sweet too and keeping Elise during our appointments. I don't know what I would do with out so many wonderful people in my life. They help to keep us going! Phillip is doing well. He is my hero as usual and just an all around amazing man. Elise is recovering from another ear infection and virus, but she is just as sweet as ever and is growing like a weed. It's amazing how when we see her face, all of our problems feel like they just disappear for a bit. 

Love you all and thanks for your amazing support. I will keep you all updated on our next appointments. 

1 comment:

  1. Hi,

    I have a quick question about your blog, would you mind emailing me when you get a chance?