Surgery or Not?

A response to a support group question that gets asked over and over...

Dear Cushies Deciding on Surgery,

I can only tell you my experience with pituitary surgery and the thoracic surgery I had to attempt to resolve my Cushing’s Disease (meaning pit over adrenal for those of you still learning the difference). This is not a lecture only my journey to a decision and the result. So here goes and if you don’t mind I plan on posting this to my blog as well since it is a question I will face for the rest of my life and I would like to remember some hopefully inspiring words to you and all those who await surgery. No worries, all names and stuff will be kept confidential. And maybe these will not be inspiring but they are words I feel needed to be said or I’d have another reason not to sleep at night.

A few years ago I started getting small colds and about three years ago I moved to pneumonia that lasted a couple of months. They put me on steroids; thank goodness they did as I probably would have never found the Cushing’s without it. I recovered, albeit slowly, from the pneumonia. Over the next months I grew sicker and then suffered a car accident with trauma to my neck and head. From there on out I was unable to turn myself back around to normal completely. I was working out and working at a good contract job but I noticed my memory and physical stamina were lacking in what I had experienced prior to all of this in my life. I had never really been a “sickling” and always an athlete even when I was not on a sport I went to the gym and ate right. My body just started changing…I began by missing my periods…

As the weeks went by I gained more than 90 pounds; had a blood pressure that was at stroke levels even as I sat watching TV; lost my hair; had numerous tests and several fights with doctors who refused to believe I was will…but I knew in my heart that this was not the Dulcie my mother or I had planned on me being. Being a bit stubborn and fighter; but mostly scared of losing everything I had fought so hard for made me drive hard and fast for answers to why this was happening to me. You see, I grew up poor and in an abusive household. I went to college mainly to get away and to do something and be someone with my life. I wanted to leave that life behind except for the good parts which were not hard to pack up in my mind and store for days when I longed for a pleasant family memory. I continued to grow sick and had more kidney infections, skin infections, and just could not get out of bed because of weakness…not because of my desire. I wanted to run and ski and do all the things I could identify with as “Dulcie.” I wanted to still be a "hot shot" at work and I knew I had to leave to maintain that reputation as I got even sicker. Luckily I got disability insurance to help pay my bills along with my savings (all gone now) and begin to rely upon others. My sickness was robbing me more and more daily…it hurt to breath and to move. Some days I just longed to reverse the clock and go back. I had a couple of bad years before that with my mother’s brain surgery and my grandmother being diagnosed with cancer at the same time as me with Cushing’s. I did not want to be a hardship to anyone since I had become so independent for the fear of losing important people and things – of losing all that I held dear to me and of a future yet to be had.

I lost friends and family because some people can not handle severe illnesses such as Cushing’s. Half of my family mocks me and walks away in laughter at the mention of my disease and I had to cut them free as it was hurting me and I had to save every ounce of energy to save myself. To breath and live everyday. Not many people really know how sick or hard it got as I still have not told everyone everything I went through so I still suffer memories that are not pleasant. And, yes, half of my friends left me on the side of the road like a dog since they could not handle my honest answers to their questions, no one brought food or came to watch a movie and I was alone while life and my illness progressed without my living it. But I also have new friends I would never discovered had I stayed the same person I was pre-Cushing’s.

When I found out I had to have two surgeries – one in the chest for a tumor there and one for my pituitary tumor – I realized that I would die if I did not have help. The help from surgery and doctors as well as what and who the universe had to offer me. I had my mother, cat and my boyfriend and people in support groups like these. I am not a religious person and I believe the universe takes care of us and gives us tools to use to care for ourselves. At that point I was so sick I was begging for them to cut me open and fix me. I went through with the surgery.

Was it worth it? For me it was, without it I would not be sitting here today responding to your request and would have died of severe diabetes, or a stroke at only 29 – 33 years old. I am nine months post-Cushing’s or so they say. There are some days that I just need to rest but think of all the days I may not have had if I never had to have surgery. While I am not 100 percent most days are good for me and I get out of bed and shower and hope to be able to work soon. I am able to enjoy a new love in my life (he came 5 weeks prior to my first surgery and has stayed with me throughout). We just returned from a vacation where we went horseback riding and walked along the tops of mountains and held hands. We did the things I would have never been able to do had I said no to surgery and let Cushing’s take over my body and my life…if I had let it kill me. Granted, I think I am a good person and would like to think I would end up somewhere good but I would not have lived a life of someone my age. I spent the last week in bed recovering but I now have memories form that trip that would have never happened. It took years of illness to do the damage it did and it will take a while to repair those years of damage.

Recovery is hard! Recovery is long and yes there is always a chance Cushing’s will come back but I am ready to tackle that battle when it comes – if it comes. One can never tell but I like to say it is kinda like the cancer patient who has surgery and then has it again…they have a life in-between surgery and if they didn’t have surgery they would have died and never had those moments I describe above. I can’t imagine not having those memories and that life and I gain more strength everyday. I will be honest, days are still hard but I am getting better after surgery and I have a life that I look forward to and one I did not let get taken from me. The disease changed me some will say but I disagree. It made me who I truly am and discover what is really important to me.

For those of you not sure think about the things I have said and if you have had enough hand holding, mountains, shopping or any of your heart’s desires then be prepared for a painful journey as Cushing’s overtakes your body and your mind…luckily you will not remember all that happens to you as it eats your mind. But for me I was not going to let it take so much of my life away. Sure I have had to change things so I can do and live life my way…I still am not perfect but then again when was I ever? I still am fearful of a return and of things I may not get back but now I can take walks, hold hands and remember the people I love. I still am adjusting to some of my changes I had to make but am thankful I got a second chance at life.

I know how hard of a choice this is and how hard it is to live with this disease or the fear that it may return but I can not see myself making any other choice – I had the surgery and will likely have it again. But then again I will get more love and hand holding and mountain views. It’s scary but think about what you will lose if you do not take that control…and if it is your time then the universe will not let the surgery work and you will move on to somewhere else or be a different person when you come out but there is a purpose to it all and you just have to look really hard to see what it is sometimes. You may be different or 100 percent the same as you were before Cushing’s but you will never be the same – it is an emotional rollercoaster, kinda like life.

I don’t mean this as a lecture; just as a reminder of things out there that you may or may not want to miss out on further down the line. I wish you all the strength you need to make your decision, I can not make it for you but I can tell you I am thankful for mine. And as a note, I do have some complications from surgery and have had a few scares already with a recurrence but life is good and I am pleased. I did not want you to think this comes with no cost since I would be misleading you. But, I have new friends and a new life. I’m still working on the full-time job but perhaps I just have not found a way to apply my purpose and make a little money to pay the bills. I still have many years ahead of me if I play my cards right.

With my warmest wishes and all the strength I can offer you,

Dulcie