Spiderman thoughts.

I spotted a little spider in the elevator at work yesterday as I was leaving. I work in a building full of biological laboratories. I kind of hoped the little spider was shielded in red and blue, then would jump up and bite me. Right now would be a good time to have the power of spiderman - to rid myself of all ailments and become stronger than the average human. I could be my own superhero, out to save my own life.

Shock.

I went to my endocrinologist today to discuss the tests I had done a few weeks ago. I went there today thinking we would talk about the possibility of me starting a workout regimen. I had read about the need to talk to your doctor before starting a workout regimen if you had hypertension, diabetes, or asthma. I fit into all of the categories.

We went through the regular routine. Maria, Dr. Jones' nurse, took my blood pressure, heart rate, and asked me a few questions about how I was feeling, entered the information into my electronic patient file. Normal stuff. I wait about five or ten minutes and Dr. Jones comes in.

"We didn't get it," he says as he takes a seat on the little swivel chair in front of the computer and desk area. He then proceeded to show me my test results from the blood, urine, and saliva tests. He showed me the comparison levels from earlier tests I had done in the year. They were all high. Very high.

Dr. Jones spoke with the pathologist who studied my tumor and he confirmed that it immunostained for ACTH and was "a" cause of my Cushing's. We can't say it was "the" cause anymore. He also spoke with my regular doctor, Hanadi Farrukh. She was very disappointed to hear this news about my Cushing's. Dr. Jones also read a few hours about "Cyclic" Cushing's. He said he doesn't even really understand it fully.

It is safe to say I was shocked to hear this news. Shocked, disappointed, frustrated, and jilted.

Dr. Jones said he had been a little surprised at our last visit two weeks ago that I still had diabetes (my blood sugar levels should had dropped to normal right after surgery), that I still had not lost my excess weight (this also should had been dropped very quickly), and that I had not been made ill after my surgery (usually happens because cortisol levels drop so drastically, the use of steroids is necessary to keep people alive). But the confusing part was that my tumor immunostained for ACTH, claiming to be the cause of my Cushing's.

Drs. Jones, Farrukh, Heaney, and Duckweiler will now work together, and possibly with others says Dr. Jones, to find out what is wrong with me. Why I still have Cushing's. Where it is. Etc.

Needless to say, I am going to have to do more tests. More needles. More scans. Eventually, more surgery. Wouldn't you just know it? Next week, a full body octreotide scan and full body CT scan.

At least I feel good. I walk normally and my husband and others say I look good (healthy). My hump on the back, hair on my face, diabetes, high blood pressure, stretch marks, mood swings, and overwhelming fat all over (including my moon face) are still here. I kept thinking they were going away, but I guess - no. Not going away.

I am still in shock. But, the way my life goes, I guess this is to be expected.

A Wrinkle in Time...

The long scar that now lines my right shoulder blade will be there forever. It will never go away. It isn't the look of it that is most annoying - for the most part, I forget that it is there. I don't often look at my back in the mirror. It is the feeling of laying on it that is obnoxious. It's like have a piece of yarn hooked onto my back. When I am laying down in bed, it feels like there is a wrinkle in the sheets and no matter how much I try to adjust myself, the wrinkle never goes away.

There are a lot of things about myself that will never be how they were before. I got braces a few months before my diagnosis with Cushing's. Now, when I look in the mirror, I am still not sure that I am "back to myself" yet. The braces have caused me to look a little different, too.

My body is going to have long-term repercussions from the Cushing's, even if I do lose all of this excess weight and become fit again. I have stretch marks that run the length of my inner thigh all the way down to just below my knees. The marks are on my hips, back, and breasts. They are so dark, I am not sure they will ever fully disappear.

I wonder if the diabetes and high blood pressure will ever go away, or if they are permanent. When will the hair on my face stop growing like I am going through male puberty?

I go to see Dr. Jones, my endocrinologist, tomorrow to go over the tests I did a few weeks ago. The 24-hour urine, saliva, and blood tests will be the topic of our discussion and I just hope he says the levels have gone down dramatically and that he suspects I should be back to my old self (whoever that is) again soon.

Yep. I got stuck on the conference table today.

I took my boss' phone into our conference room this morning before our meeting. It was hard enough to get the phone out of his office (had to climb under the desk to unplug it), but then we had to set it up in the conference room. It wasn't working when I plugged it in, so I thought I would throw the cord across the table and have a member of our committee plug it in on the other side of the room. I leaned across the table, gave him the cord, and then just kind of - laid there. Bent over. Half way across the conference room table. I'm the only female in the room with six men. I was stuck.

I was getting that shock and burn feeling in my side under my arm each time I tried to get up. I tried to play it cool for a minute and then someone asked if I had a bad back. Nope. My boss explained I had recently (11 weeks ago today) had part of my lung out and was just getting the feeling back.

Two professors helped me off the table - at which point I already had tears in my eyes - both from the pain and from embarrassment.

Really. Oi!

Relief

I went to the endocrinologist yesterday. I was really worried about what I might here. Everything has been so undefined and unpredictable so far.

My tumor immunostained for ACTH. What a relief. That means, for sure, that my tumor is what caused my Cushing's. Now I have to do tests (24-hour urine, saliva, and blood) to make sure my ACTH and Cortisol levels aren't too low.

It was today, while walking to my car, that I realized what this really meant in my life. I was finally free. Free from this illness that caused me so much grief, pain, and more symptoms than I have ever known could be possible in one person at one time. No telling how long I actually lived with this illness. I am not even sure what to expect now. For the last several months I've just wanted to be "normal" and feel "normal." Now, I don't even know for sure what that means. What is normal?

I am going to find out what normal is. After so many years with this illness, and now recovering from the surgery to remove it, I expect it will take a long time, maybe even years, before I am completely back to myself.

As this blog explains though, I will never be the same. I've got this experience now. This history and present that have an effect on who I am - how I view the world and myself. These experiences we have in life can change us for the better or worse - I think it is our choice.

2 Problems - 5 Doctors - What do I do?

I had Cushing's Syndrome AND Lung Cancer. The Cushing's Syndrome was caused by the Lung Cancer Tumor. This is as simple as my situation gets.

I was initially diagnosed with Cushing's by my primary care physician, Dr. Farrukh. She then referred me to an endocrinologist, Dr. Robert Jones. He wanted me to have this IPSS (Inferior Petrosal Sinus Sampling) test done by a Neuroradiologist. I chose to go to UCLA for this test and to meet with a neurosurgeon and neuroendocrinologist about having the tumor in my pituitary (that is where it was thought the tumor was) removed and for treatment post surgery.

I have a neuroendocrinologist who has been following me from UCLA, Dr. Anthony Heaney. After the IPSS, he sent me to have a CT scan of my chest, abdomen, and pelvic areas. I did this back home in SLC at the University of Utah. They found the tumor in my chest. I decided to see my pulmonary doctor, Wayne Samuelson (I have asthma, so we already had an established relationship there - plus I was his secretary about five years ago). Dr. Samuelson then referred me to see Dr. David Bull, a cardiothoracic surgeon.

Not counting the other doctors I had seen at UCLA (the neuroradiologist, a team of pulmonary doctors after I had my left lung collapse prior to the first attempt at an IPSS, and the neurosurgeon I met with), these are five doctors I have dealt with for my two problems. These doctors haven't really communicated with each other and I felt for a long time like a patient without a doctor, even though I had five of them. I didn't know who to go to for what!

Now I have the same kind of problem, but with the search for support instead. It has been a very difficult task to try and find someone out there who has had both Cushing's Syndrome AND Lung Cancer where the cancerous tumor is what caused the Cushing's. It was frustrating, and still is a little bit now too.

I have decided to treat each problem like its own, individual problem, rather than one that is all encompassing. Like the last post explains, I love the Internet. I was able to find support for the post surgery (post lobectomy) pains I have been experiencing. I started an awareness group on facebook recently also. The creation of this group has encouraged me to find others with Cushing's disease and syndrome who have blogs, or organizations and hospitals who support people and their friends and families with Cushing's.

I have to look at my illnesses from a "divide and conquer" approach. I recognize that what I need for support can come from two different types of people: those who have had lung surgery and those who suffer from Cushing's. Mine is a combination of those two things, but the symptoms are different for each. I haven't stopped the search for someone else out there who has had both like me, but I have decided to let it go in a way so that I can move forward and find the help, support and confidence I need to continue on with my life!

The comfort of the Internet

It is funny how the times have changed. People always say that because time is change - pretty much by definition. I look at how it was maybe 10 or more years ago with trying to get diagnosed with Cushing's or finding a doctor at a hospital no where near my home. I would had needed personal referrals and had to search for doctors in a way that is almost nonexistent today - phone books.

I have been suffering with these really sharp pains that can only be described as electrical shock and fire in my chest. The pain can be pretty severe, right under my right breast and armpit mostly, but a little bit in my back near my incision areas. I am just over ten weeks out from surgery now and didn't think I would start experiencing a new pain from the surgery. I knew I had been numb in those areas since the surgery and my surgeon said the feeling would come back, I just hadn't been prepared for it to be so painful!

So, up at 3:30 a.m. I decided to get on the Internet to see what the problem was - why was I experiencing such massive pain now?

Apparently my nerves are "waking up" post surgery after having been cut through and reconnected to new tissue, etc. After a VATS RML (Right Middle Lobectomy), this is common. I found that most people who wrote about their experiences took pain medication to cope with the sudden shock-like symptoms. One person explained the feeling as like "being poked with a sparkler" and that was another great description.

It's amazing how reading about other people's experiences can help us feel better, more confident, and directed. I don't feel like I need to run off to the ER because of my pain. I will wait to call my doctor on Monday and then go from there. I took some (1000 mg) ibuprofen and have just tried to stay still for the last few hours. I think it has helped. Now, of course, I will need a nap to recover from a night with no sleep!

Healing

I am almost 10 weeks since surgery. I have been numb around my right breast, side and back since the surgery. Now, over the last week or more, I have been getting these sharp pains. I think the feeling is starting to come back. Perhaps the nerve endings are starting to work again.

I thought I would post some pictures, since I never have on here before. This is one picture I put together to show my "before" Cushing's, "before" surgery, right after surgery (still at the hospital), and today (nearly 10 weeks out). I'm hoping to get to that "before" Cushing's look again really soon!

Fear and loathing in Salt Lake City...

I am so afraid, still, that the cancer did not cure my Cushing's. I know some people say they can see changes in me - my face or skin color - but I don't really. I keep taking pictures and trying to compare them, but I only see little tiny changes and can't confirm whether or not they have anything to do with my surgery.

I do feel better. Does that count as a change in the right direction when it comes to Cushing's? Obviously it is heading in the right direction overall. I just want to know I am on the recovery side of everything.

My doctor, a Neuro-Endocrinologist from UCLA, emailed me on Friday to see how I was. He asked me about some tests on the tumor. I didn't know what he was talking about, so I hope the surgeon here asked for that test to be done. I don't know. I've kind of kept away from anything relating to the surgery or my illnesses unless I absolutely needed to.

Remember, I hate needles. Still.

On Tuesday October 13th I have to go and see the endocrinologist here to start testing for Cushing's again. More blood, urine, saliva tests. I just want it to be over.

I fear the possibility of still having Cushing's. I loathe needles and tests. Thus, the fear and loathing...