Wednesday, July 31, 2013

NOT HEREDITARY!! and Next Step....

Thank you Auntie Jill, this is
just what I needed!
It's been a crazy time since my last post! Nothing like having anesthesia 2 times within 12 days; I'm becoming a pro at many of these hospital things. I had my colonoscopy last Tuesday and received the news that everything was clear! So... Dezzie is NOT hereditary! As much as that would have made all my other decisions I needed to make easier, I'm ecstatic that it is not! I wouldn't wish any of this on anyone to have to go through! 

I have been wracking my brain trying to figure out what going to do.  It's especially hard when I'm very indecisive when it comes to making decisions.  I've been trying to make a pros and cons list and reaching out for advice from others to try to make a decision.
  
Welllll, I've finally made a decision.  After all of my pain coming back and still being in lots of pain, I decided to have a total hysterectomy.  My oncologist consulted with my fertilization specialist and they decided it wouldn't be a good idea to freeze my eggs either.  I can't afford to have all of that estrogen injected into me.  My health is the most important thing and I would be taking some big risks with the injections.  That made me feel better with my decision knowing that we are at least on the same page.   

I will be having a total hysterectomy August 16.  They will remove my ovaries, uterus, cervix, fallopian tubes, and also scrape the lining to be sure that they have removed all of the endometriosis.  I will be in the hospital 2-5 days.  The nice thing will be that I will not be receiving the Depot Lupron shot anymore after the hysterectomy.  It has definitely kicked in and I have been having HORRENDOUS hot flashes!  I received another of the shot today, so it will be in my system for another month and then will hopefully not be as bad.  I'm just so fed up with all of this.  I'm sick of being in so much pain.  I'm a wreck.  I just would have never expected to be 25 years old and have to go through all of this. 

**Please consider making a donation on my behalf for the Desmoid Tumor Research Foundation. A cure needs to be found!  I have faith that one will be found, just hope its SOONER rather than LATER!  


When make a donation, write
"Bracelet" in the "Additional"
Box - $2
I just want to do a quick shout out to Luis for putting up with me through all of this.  I know I can get moody at times because I'm so frustrated but thank you for taking care of me and chauffeuring me around.  Also, thank you to my stepsister Kathy and her family.  I would be lost without you.   

Thursday, July 18, 2013

If It's Not One Thing, It's Another...


Since I last wrote, my medical leave has been extended.  I have been on medical leave since June 24 and will be until August 5.  I have had appointments every week with my oncologist for check ups and ultrasounds to check the status of the cysts.  
 
July 3- I was still in lots of pain and had not seen any signs of getting better. Therefore, I received a Depot Lupron shot.  This shot does take at least 1 week- but can take up to 3 weeks to kick in.  The side effects are menopausal symptoms (just like the Tamoxifen).  This shot will completely shut down the functioning of my ovaries (it's just temporary!). Since it will shut them down, it will HOPEFULLY shrink the cysts.  I will receive this shot once a month.

July 10- 6:15 a.m.  I woke up in the worst pain I had ever been in!  I was bent over in so much pain, I felt like I was going to vomit, I was super hot, I was crying I was in so much pain!  After a little bit of time, I was finally able to get the pain under control a little bit.  I had many discussions with my mom and stepsister trying to figure out if I should go to the ETC (the clinic at City of Hope) or wait it out because I already had an ultrasound at 2 and then appointment with my oncologist at 3:30 scheduled.  We decided to wait it out because would get more answers sooner from those appointments than waiting allllllll day in an uncomfortable hospital room.

My ultrasound showed that there was fluid so one of the cysts had partially bursts and showed that the cysts had shrunk some since the last ultrasound.  My oncologist was completely puzzled as to why I was having so much pain, even though they were shrinking.  He decided that it would be wise to do a laparoscopic surgery the next day to take a look around and see if he could see anything.

July 11- I had so many questions and thoughts running through my head the whole day: is this the best decision right now, should I go through with this, if I'm going to eventually need my ovaries removed-why do 2 surgeries, etc.  I had to be at the hospital at 4 p.m. and at about 2 p.m. that day I was so close to calling to cancel it. 


Bring it on!
I knew there was a chance that depending on what he saw that I would wake up with 1 or no ovaries.  I knew that that would be a decision I would need to make soon, but didn't know if it was going to be made for me.  I couldn't snap out of the anesthesia for the longest time, so I had my first experience of staying overnight in a hospital! When I woke up, I was informed that I still had both of my ovaries! It was also discovered that I have endometriosis now.... as well as everything else.  He scraped out as much as he could, but there is still some there.  It's a good thing that I didn't cancel the surgery because I would still be sitting here wondering why I was in so much pain.

Morning after surgery 

I was having quite a bit of pain in the hospital, but I was happy because the pain was all in my incision sites.  I at least knew that that wasn't a permanent pain because before I had no idea if the pain was going to ever end.  

July 17- I had my post op visit with my oncologist and discussed more about the endometriosis.  Unfortunately, endometriosis is caused from Tamoxifen.  However, the Depot Lupron is a treatment for it.  So hopefully that will stop it.  But, unfortunately, will only be able to tell with time.  Keep fingers crossed! My oncologist told me that I am his most exciting patient because nothing about me is normal.  I would normally take that as a compliment....just wish it was in a different situation.  It just sucks that because everything about me is so different, it takes awhile for them to come up with answers and not even sure if those answers will work or not.

In the meantime....

I have a lot of things to think about.  I have met with a fertility specialist about possibly freezing my eggs.  However, the big concern is that for 10 days prior to the procedure, I would have to have daily injections to get my body ready to release enough eggs.  But, these injections would be estrogen.  BIG PROBLEM: I'm avoiding estrogen!  Therefore, the specialist is going to chit chat with my oncologists and see if they can come up with a plan that would work better.  I am awaiting a phone call to hear what they have discussed. 

One thing I'm concerned about is how expensive this whole process is and there's only a 50-60% chance that the eggs would survive.  To me, that's not a very high survival rate.  Then there's also all of the issues that can arise that you see in movies/TV with having a surrogate.  I don't know.   I just don't know what to do.  I do know that MY health is the most important factor right now. 

I will soon have my ovaries removed and then I will have no pains, hopefully, because there will be no cysts or endometriosis.  For as long as I'm on Tamoxifen, those 2 painful side effects will be an issue.  Therefore, I don't have a whole lot of time to make decision whether going to freeze eggs or not.

Sorry this last part is kind of scattered.  I just have so much on my mind, constantly thinking about everything.  I feel like I'm not completely here at times because I drift off thinking about everything.  I just wish that someone else could make these decisions for me... any takers??! ;)