So after about 18 months after my radiation treatment, my mom and I were once again on our way to Edmonton for yet another appointment. This time I would be down there for Three days. I was getting my MRI done for the doctors at the University Hospital done on Monday night, my appointment with Dr Chik (my endocrine specialist) and Dr Broad (my neurosurgeon) was on Tuesday, and then my appointments at the Cross Cancer Center were on Wednesday. In the many trips back and forth to Edmonton my Mom and I get lots of chances to talk. We have talked about absolutely everything. We have developed a very close bond over the past four years. We have been through alot together and I am thankful that I have had the chance to spend so much time with her, she has become my best friend and I know that I can tell her ANYTHING! (I love you Mom!)
Anyways we drove to Edmonton Monday morning to make it to my appointment that night, and of course as my luck would have it they were running behind schedule. We had to wait a while only for me to go in and have a 10 minute MRI scan. After my appointment we went back to the hotel to chill out for the night. We woke up fairly early the next morning to do some running around before my appointment. When we got to the hospital we made our way up to Dr Broads office (we have been there so many times I am sure we could do it blindfolded!). We didn't have to wait too long and I was called into one of the rooms. Soon after Dr Chik and Dr Broad both came in, they pulled up my MRI on the little computer screen. I always look at the screen but I can never see what they are looking at unless they point it out... I always watch Dr Broads face to see if it is good or bad news. The last few appointments there hasn't been a change in his expression but this time I noticed a change.... my heart was racing. Immediately he looked at me and said "We are going to remove your adrenal glands." A million things were running through my head at that moment... but all I could spit out was "OK."
This is where Dr Chik stepped in and said that the reason they were going to do this is because it has been 18 months since my last radiation treatment, I am on high doses of ketaconazole and there is still no change in my levels. Also according to my last blood test my liver enzymes had doubled in less than a month (I take it that is not a good thing!). They went on to say that they both agreed that removing my adrenal glands would be best for me.
I just sat there kinda stupid. My mom was asking questions but I don't recall what they were saying. All I could think of was this was something that I had been asking them to do but now that they have said this is what they were going to do I wasn't sure. I mean I wasn't actually sure I could handle another surgery.... both physically and mentally. I had done some research on adrenal removal surgeries so I had an idea of what it entailed but.... I was scared.... overwhelmed...
We were asking them questions but they were unable to answer alot of them because they wanted to let the surgeon answer them for me. I wanted to know if they would do the surgery laproscopically, or if they would have to cut me WIDE open. I wanted to know all the possible complications of the surgery, and what I could expect afterwards. I had so many questions...
Dr Chik told me that she would arrange to get me set up with the surgeon who would be preforming my surgery. She had 2 in mind, one had more experience with Cushing's patients than the other but she assured me that they were both great. Dr Chik told me to continue taking my medication as I had before and that she would be in touch.... and with that we were sent on our way.
Needless to say the rest of the day was pretty much wasted. I didn't want to do anything or go anywhere. I believe my mom even took me to The Olive Garden for supper (she knows it is my favourite).
The next day we went to my appointment at the Cross Cancer Center. I got my MRIs done, I even had the one where they inject dye into an IV so they can see the tumor better. It feel sort of cool and gross all at the same time. I wasn't really into talking with the nurse or the doctors, I had too much on my mind from the information I had received the day before.
Me and mom were once again on our way home. I had a lot of time to think that day. I know my mom knew that I was scared and worried. She kept asking me how I felt and what I was thinking. I try not to let her know when I am scared because then she worries even more about me so I kept saying that I was fine with it. Really I wasn't... how much more would I have to edure?
My Dad and sisters were also worried when we told them what I had to get done. My whole family was really.... I have a great family and they always know what to say to me to help make me feel better. My Dad (Jim) doesn't treat me differently because I am sick, I am still the same old Stacy to him, but if I need someone to talk to or a shoulder to cry on hes there! My sisters are great for taking me out and doing things to get my mind off things, and my mom well shes just great... a little overbearing sometimes (always reminding me to take my pills, get rest... you know the "mom" haha). It is nice to have that balance... I was glad to get home and just absorb everything. It gave me a chance to do some more research and learn a bit more about possible complications and what the expected results of having my adrenal glands were.
I continued to try and carry on with day to day activity; work, riding my horse etc. Now I would just have to sit and wait until the surgeons office called.
Both of my children just recently (6 weeks) had a BLA (bilateral adrenalectomy). They are both doing pretty good. Both had pituitary surgery last May but both had a recurrence.
ReplyDeleteI belong to an online support group, it helped me so much while looking for a diagnosis for Justin & Jess.
http://www.cushings-help.com/intro.htm
There is a lot of information there along with the message boards.
Good luck with your BLA.