12 Days post Surgery

I have been home since Friday afternoon!!! It has been wonderful to be at home! 9 days in the hospital were long enough. I still don't have much of an appetite and can only eat a little bit before getting full. I am trying to eat about 6 small meals a day. I have lost 8 lbs since my surgery, which does not surprise me since I am eating so little.

On Saturday, I took my first shower since surgery and it was amazing! It's funny how such a simple daily activity can make you feel 100 times better.

I am still getting tired really easily and have already fallen into a routine. I wake up around 8:30am to eat breakfast and take care of my pancreas drain bag. Then I get cleaned up and take pain meds around 11am. By this time I'm exhausted and lay down for a nap. I sleep till 12:30/1pm then eat lunch. After lunch, I read or crochet for a bit before my afternoon nap around 3pm. I wake up around 5pm and eat dinner/spend time with my husband before hitting bed to watch TV around 8pm. I usually fall asleep by 10pm and wake up once during the night. It sounds exciting right?!

7 days past surgery...

Today started out with my first ever enema, yay me! It was horrible and I could go the rest of my life without another one.

The plan for today is a CT scan with contrast to make sure that I don't have any weird leakages or blockages before they try solid foods again. I am so hungry and would give anything for some pudding. But in the mean time, I will settle for apple juice with contrast. Drink up!

6 Days Past Surgery...

And I'm still in the hospital without a set discharge date. The surgery itself went very well. I went under around 10:20am. Dr. M went first, he removed the tumor and part of my pancreas. Once the tumor was removed, Dr. M went on to attach the back portion of my pancreas to my small intestine. After Dr. M completed my pancreas, he and Dr. B worked together to remove the endometriosis from under my diaphragm. Apparently, I had one large endometrial adhesion, along with several small adhesions. They removed all of the adhesions from my diaphragm. Finally, Dr. B removed the endo adhesions from my abdomen, he showed the pictures from my surgery to my husband. My husband said that my abdomen was covered in adhesions and scar tissue. Fertility wise, this will make it easier for any fertilized, healthy eggs to make it to my uterus. Lastly, Dr. B removed the septum in my uterus. It turns out that what they thought was a fibroid in my uterus is actually an adenomyoma, so I will be having a hysterectomy when we are done having kiddos. I woke up from my surgery about 6pm that night and was admitted to hospital room by 7pm.

I am feeling slightly better everyday, but am still on a clear liquids diet. They tried solids yesterday for lunch, But I threw up lunch, so it was back to nothing by mouth until lunch today. Lunch today consisted of apple juice and a Popsicle. Dinner will probably be chicken broth and jello. I know you are jealous of my diet ;)

Ready to go...

Our house is clean and I have my bag packed for the hospital. What's in my bag you ask?! I made sure to pack my trusty Panthers hat and dry shampoo since my biggest pet peeve is greasy hair (gross!). I have also packed a few comfy t-shirts, sweat pants, and socks. I have my phone charger and the 4th book in the Game of Thrones series so I can be entertained while I am not sleeping (which I am hoping to do tons of sleeping).

While I am feeling scared, nervous and super emotional today, I also feel so blessed to have friends and family that have all checked in on me today to see if there is anything they could do. Basically now I am just so ready to have it over with and ready to be on the road to recovery.

I have downloaded Blogger to my phone and hope to update the blog on a daily basis while in the hospital, even it is with short posts. Thank you in advance for any positive thoughts and/or prayers you send my way while reading my updates. They are greatly appreciated! :)

Preparing for Surgery...

The past few weeks have flown by! Since my last post, I had the endoscopic ultrasound, which knocked me on my butt for 2 days. The anesthesia made me throw up once I awoke from the procedure, I slept on and off for about 24 hours, and I had a sore throat for 4 days. During the procedure, Dr. L. tried to get a good biopsy of the tumor; however, he said it was difficult because the tumor was similar to the consistency of Jell-o, all jiggly. My biopsy results came back inconclusive because of this, but all signs are pointing to a benign neuroendocrine tumor.

This past week, the hubs and I spent a long weekend in Washington DC visiting friends and being typical tourists. It was nice and took my mind off of the impending surgery; however, now that we are back to reality I am becoming scared and nervous. I am such a planner and am spending today and tomorrow preparing for the surgery, but it is driving me crazy that I really do not know what to expect after the surgery.

I have been pinning numerous inspirational quotes over the past few weeks to help remind me that once I am past this hump, everything will be ok. However, the quotes I keep coming back to that give me peace of mind are these:

 

CT Scan & Reeling...

On Monday, I had a CT Scan to take a look at my abdomen and diaphragm so my doctors will have a good idea of what they will see when I undergo surgery. The day before the scan, I had to drink 2 liters of water, which felt like a billion gallons.

The morning of the CT Scan, I arrived at the hospital an hour and a half early to check in and drink a liquid contrast. It was not completely gross, but I would not want to drink it on a regular basis.

The CT Scan was a whole lot quicker and easier than the MRI! The CT Scan itself took maybe 5 minutes. However, it took them 20 minutes to get an IV run and I have a couple of lovely bruises from the fiasco. My veins are hard to hit on a good day, but they were refusing to cooperate that morning.

My Dr. called me to go over the results of my scan on Monday evening. My uterus looks just as expected. The endo adhesion they saw runs below the right quadrant of my diaphragm and behind my liver, that is really not a shocker. The real kicker was when he explained that there is a small tumor on my pancreas. He does not believe that it cancerous, but is sending me to a specialist to have it looked at before surgery.

I have an Endoscopic Ultrasound scheduled and a follow up the week later. I will now have at least 3 surgeons scrubbing in for my surgery (Dr. B. for my uterus, another doc for my diaphragm, & now Dr. M. for my pancreas). I am trying to stay positive and I am so glad that this was caught early on. However, I have to admit that part of me is scared.

The Waiting Place...

I've been super slack on updating my blog because there is not much going on. It's like in Dr. Seuss' "Oh The Places You'll Go" where he describes the Waiting Place. Basically, I go to work, the gym, and spend time with my husband. However, in the back of mind I am constantly reminded that surgery is looming in my future. The planner in me hates being in this waiting place. I am just ready for surgery to be scheduled so that we can move forward.
My Dr. has reviewed my MRI, which showed the mass in my uterus, but not a clear picture of the endo adhesion on my diaphragm. So, on Monday I head in for a CT Scan with contrast. The CT should show a better picture of the adhesion and give my Dr an idea of what they will see when they open me up. My Dr will also take the MRI & CT photos to surgeons to find the best one to do the surgery on my diaphragm. I'm hoping to know the actual date of my surgery in the next 2 weeks. But until then...

"Everyone is just waiting.

No!

That's not for you!

Somehow you'll escape

all that waiting and staying.

You'll find the bright places

where Boom Bands are playing."

~Dr. Seuss, "Oh The Places You'll Go"

No Lupron

After doing some research, I have decided not to take the Lupron for 3 months before surgery. I decided that the best thing for me was for my Dr. to be able to see everything when he opens me up. I do not want to suppress my hormones and this disease. I want this to be my last surgery until I decide to have a hysterectomy.
I have also decided that I want my OB/GYN to do the surgery instead of my RE. My OB/GYN has more experience with surgery on endo in other places besides the pelvis. He is currently trying to find a Dr that has done surgery on the diaphragm to remove endo. Once he has a team of Drs together to do my surgery, we will schedule it. He said that it would probably be November or December.
So, we are currently in the waiting place. While here, I plan to continue to focus on myself and trying to get as healthy as possible.

MRI & Zumba

Today was my MRI. I have had 2 MRIs in the past, both which included headphones that allowed you to listen to music while the machine is doing it's thing. The place I was sent to today did not have music. :( Let me tell you, music makes all the difference!
I had about 5 scans done, which ranged from 5 minutes to 3 minutes in length for each one. They seemed to take FOREVER. The scan sounds like someone banging pans together and bad techno music combined. Overall though, it was not too bad. The guy who did my scans was super nice and soothing. He really made me feel like my comfort was his top priority.

Since I have been feeling like crap for the past week and a half, I have neglected to work-out. My shoes were starting to feel lonely and forgotten on the stairs...

So I decided to take them out and try a class at the Y that I have not done yet. I decided to try a Beginner Zumba class since I am not very coordinated. The class was so much fun!!! If you have not tried it, I would highly recommend it. I will be adding at least one Zumba class into my weekly work-outs from here on out.

So, now the wait is on for the results of my MRI. I am just going to keep trying to focus on my overall health and trying new classes at the Y to keep me occupied and keep my mind off my uterus.

Sprinkles make it better

This week has been a rough one. I am currently on cycle day(CD) 6 and my cramping is finally subsiding. I have spent the week feeling like I had been in a fight and had been sucker-punched multiple times in my gut.

Even though this week was rough, we did receive some good news. My blood work shows that I still have a healthy reserve of eggs!!! So, my uterus just needs to get it's act together.

To help feel a little better (& because it was my sister's birthday), I made Birthday Cake Cookies. My youngest sister says that sprinkles always make things better, and with these cookies, I have to agree!

 Birthday Cake Cookies

What You'll Need:

1 box of Cake Mix (I used Funfetti since it has sprinkles already in it)
1/2 cup of butter, melted
1 tablespoon milk
1 egg
1 can of icing
1/4 cup of sprinkles

Step 1: Heat oven to 350 degrees F. In a large bowl, stir cake mix, butter, milk and egg until a soft batter forms. Form approximately 20 tablespoonfuls of batter onto an ungreased cookie sheet.

Step 2: Bake 8 to 10 minutes or until cookies are set. Remove cookies from sheet and let cool completely.

Step 3: Spread icing on the bottom of 1 cookie, then top with another cookie, bottom side down. Roll the icing edges in the sprinkles. If you would like, top the cookie with a candle.

Declaring War on My Uterus...

Hi! My name is Jenn, otherwise known as Goose. I am 32 and married to my best friend. We have been married for almost 3 years and decided to start trying for a family a little over a year ago. 12 years ago, I was diagnosed with severe endometriosis and have had a total of 3 laproscopic surgeries to clear the endometriosis out of my abdomen. I have also been diagnosed with adenomyosis and last year found out that I have endometriosis on my diaphragm. I have been described by my doctors as "a challenge" and "a tough cookie."

This week, we met with a Reproductive Endocrinologist (RE) and found out that I have a mass inside my uterus. The game plan is to have an MRI to get a better look at the mass and to check on the progression of the endometriosis on my diaphragm. From there, I will go on 3 months of Lupron and then have surgery to clear out the mass and any endometriosis.

So, since my uterus has decided to be uncooperative, I am declaring war on it! I will use this blog to document my vents and adventures as I go to war against my uterus and try to convince it to get on board with growing our family.

My goal for the next 3 months, while I am on Lupron, is to get in the best possible shape so that I will be better able to recover from surgery.