Wednesday, September 25, 2013

Post Surgery Blahs...

So I'm almost 6 weeks post surgery. Crazy how fast time has flown by. I'm getting along better, but not 100% yet. I am still out of work until October 21. I still need help getting in bed, but I'm almost there. I have had a few different pains, but my doctor said those are normal pains after having such a big surgery. It's so crazy, my stomach is still numb. It's the weirdest feeling. I've been trying to go on walks and small outings to work up my endurance. If I have a big day, I definitely pay for it at the end of the day. 

I'm starting to feel better, physically and emotionally. I have my "moments" where the post surgery blahs kick in, though. I sometimes have a hard time when I see pregnant people. It seems like everyone is getting pregnant now, it's all I see on Facebook. I don't have anything against ones that are pregnant, but its just sometimes hard for me. I guess just realizing that all of this is true and letting reality sink in. I know that it's normal, especially for everything I've gone through, but I feel guilty when I have my "moments". 


I'm just kind of stuck in a rut right now. My forehead is getting bigger aka my hair is thinning more and I'm so pale. I can't believe it's almost October and I can count on 1 hand how many times I went to the pool this summer. That is so not normal for me. I also didn't go to the beach at all. It just sucks cuz my favorite things about California are the sun, beach, and hiking. I have not done any of them. Not by choice, either. 


I try to stay positive, but it's not always easy. There's a Facebook group called "the Desmoidian" that all the members are people with desmoid tumors and their family. Finding that Facebook group has been one of the greatest things. I've never personally met any of them, but I have gotten to know many of them so well that it feels like it. When I'm down, I know I can count on them because they've all been there before too. This coming weekend is the DTRF Research Symposium and Running for Answers in Philadelphia. I'm very sad that I won't be there, but I hope to next year. Watch this to learn more about Running for Answers. Sometimes it feels like no one understands, but these people do. I wish there were some that lived around me. 


The new Katy Perry song "Roar" is one of the most motivating songs. One of the first things I do everyday is listen to that song to try to get in the right mindset everyday. 


I started a new medicine, Neurontin, to hopefully help with the hot flashes. I'm just a little unsure of it because I take 100mg 3x a day for a week. Then 200mg 3x a day for the second week, then 300mg 3x a day starting the 3rd week and continue with that. 900mg a day seems like a bunch of extra junk to be putting into my body. I just started the second week today, so hopefully I start noticing some relief. On top of all of this I am sick now, too.  I have to be careful because the tamoxifen makes my immune system a lot weaker and makes it easier to get infections.


Tomorrow will be a new day...

Thursday, September 5, 2013

3 weeks later..

Well, it's been 3 weeks today since my surgery.  I'm a whole new person since my last blog post. I no longer have any of my girl organs. I had my hysterectomy surgery on Thursday, August 15, and was in the hospital until Tuesday, August 20.  Everything went well for the surgery, it actually was quicker than anticipated. 


Lunch right on the ocean at
Malibu with my dad
Tuesday before my surgery, my dad flew out here so we could have a couple days together before I would be out of commission for awhile.  It was his first time out here since I moved here.  It was fun to show him around a bit.  We also went to places that were new for me to see.  It was just what I needed to get my mind off of everything that would be happening in the next few days.  


Getting my hair washed in hospital








My days in the hospital are all kind of a blur because I was on so many pain medicines.  I had a pump where I could press the button every 15 minutes, I was getting injections into my IV every 6 hours, and I was taking pills every 4 hours.  Needless to say, by being on all of those pain meds, I wasn't feeling so well.  It didn't help that I was on a liquid diet for the first several days of being in the hospital.  All of my nurses were so nice and helpful at the hospital.  They definitely made my stay there much better.  But by the end of my hospital stay, I got a horrible sore throat that developed into a cold.  

I wasn't ready to go home from the hospital, I thought I needed one more day.  But since I was getting a cold, my doctor wanted me to go home because it would only get worse with all the germs in the hospital.  I went on walks while in the hospital but always had my IV cart that I could hold onto.  I couldn't walk very far without holding onto the cart.  I also couldn't get myself out of the bed by myself.  But, I had to do what the doctor says.


Just got home from hospital 
The drive home hurt so bad.  California roads suck.  Every little bump in the car felt like we were hitting the biggest pothole ever.  I was very worried about how I was going to walk from the car to my apartment.  The distance that would need to walk was further than any distance I had walked in the hospital.  My dad dropped me off the closest that could to the elevator and then had to walk down the long hallway.  I don't really remember much of the walk, except that it took me awhile.  Once got home, my oversized chair with ottoman became my best friend.  I slept in the chair for over 2 weeks before I could finally get into my bed.  


Thumbs up because my first shower
at home is done and out taking a walk
around my apartment complex
My dad was with me until Friday, August 23, then my mom flew out here the same day to help me during the early stages of my recovery. I couldn't believe how much assistance I needed in everything I did: I couldn't stand up, go to the bathroom, shower, get food or something to drink, nothing.  I can't lift more than 5 pounds for 6 weeks.  Thankfully my parents were both able to come out here and help me.  I would have been so lost without them.  Luis has been great help when he can, but he has to keep working and started school.  

My incision is so big.  I didn't expect it to be so big.  It's 9 inches long.  It goes from one hip to the other.  It is glued together, no stitches.  Therefore, there's many times when it feels like it is ripping open.  It hurts sooo bad.  It still hurts so bad to cough, sneeze, laugh, talk real loud, and lift my legs.  I am finally sleeping in bed again, so that at least is good news.  But, I need assistance getting into bed or getting up.  

I've just kind of been down in the dumps.  I can't believe it's already September.  It hit me so hard how long I've really been out of work and dealing with all of this.  I can't believe that summer is almost over.  I haven't been able to go to the beach, the pool, go hike or do anything that I normally do during the summer.  Instead I've been cooped up in my apartment in lots of pain.  I barely even go outside because it has been so hot.  It never fails that the little bit of time that I'm outside I have a hot flash.  My hot flashes seemed like they had gotten better after my surgery.  But the past 3 days have been horrendous.  I am miserable.  I just get so restless after awhile.  I have completely frozen everyone out of my apartment because been keeping the air so low.  

While my mom was here, I started going on a few "outings".  I've been getting stir crazy constantly in my apartment, so it felt good to get out for a little bit.  However, I get exhausted so fast.  I've been trying to do a little bit everyday to get back into the swing of it. 

Today is my first full day without either of my parents.  My mom left yesterday.  It feels so weird being just me and Marlee.  I have had someone with me for the past 3.5 weeks.  My mom made up lots of food and froze it so that way there's easy meals for Luis and I to prepare while I'm recovering.  I am able to stand up out of the chair on my own now, but it hurts.  If I move too fast, it feels like it's going to rip open.  

Some great news, though....

DEZZIE HAS SHRUNK SOME MORE!!!!!  I can barely even feel the tumor anymore when I feel my abdomen.  The very first measurements of Dezzie were 83 mm x 69 mm and now it's 66 mm x 59 mm!!!  It makes me feel better that even though I'm going through all of this, it is at least working!  And hopefully Dezzie will shrink even more since my body will no longer be creating estrogen!