Monday, July 27, 2009

Skipping ahead.

Okay. I don't have time to continue on with my story. Here's the spoiler:

I have one of the most rare forms of lung cancer known in humans. It is a carcinoid tumor that also is endocrine secreting ACTH. Thus, this one tumor is cancer AND causes my Cushing's Syndrome. Lucky me. Only about 30 people or fewer get this type of cancer per year.

The good things are that the prognosis for treatment through surgery is very good. Most people who have this type of cancer are both cancer and Cushing's free after surgery, and completely recovered after about a month (no symptoms, but surgical recover still not complete).

The reason I don't have time to continue on with my story is because I go in for surgery to remove the tumor this Friday, July 31st. I will have to be in the hospital for about one week, and then I have a six week recovery (includes first week in hospital).

The truth of the matter is that I am scared. I am frightened about a number of things.

I don't want to be disappointed again. If something happens and the surgery cannot be done, I don't know that I have the strength to keep pushing forward. If, for some reason, the cancer or Cushing's Syndrome don't go away after the surgery, I can handle that, but I have such high expectations that both will be gone.

I can actually handle the idea of cancer after the surgery (having to go through chemo- or radio-therapy). I don't think I can handle the symptoms of the Cushng's Syndrome anymore.

I am afraid of being cut open.

I realized last night that I will have a permanent scar on my side. I only have a few days left without the scar that will surely be there for the rest of my life. A weird representation of this whole mess. Every time I wear a bathing suit, a tank top, or sexy dress, the scar will be there like a battle wound. My husband said he won't care and that it will just be a bit of character.




I think I would prefer my "character" be represented by my laugh or now curly hair. Scars are ugly and misleading. Nobody knows why you have the scar, so they start conceiving things in their mind as to where the scar came from. Obvious scars, like the one I have from the C-Section giving birth to my daughter, comes with no questions. Besides the fact that it is in an area I don't usually display to the public, it is a scar that brought about joy. I have another scar on my breast from a cyst removal. That is another one that is not visible to the public. This scar will be visible based on my desired clothing choices.

I have this notion that my face will thin out and I will lose all kinds of weight. I think that my joints and muscles will regain their strength and I will walk normally again. I hope that my blood pressure, vision, and water retention will go back to normal.

I just want to feel normal again. But I am terribly nervous about surgery. A five hour surgery where my side will be cut into, the ribs will be spread apart and possibly broken in places in order for the surgeon to get the tumor and lymph nodes out.

I sometimes feel so sad and scared, I start to cry. Sometimes it is so bad, I want to throw up. I just try to keep busy and not think about it too much, but, obviously, I have a hard time doing that ALL OF THE TIME! Like now.

I don't think I will post again for a while. I am not even sure if the hospital has wireless Internet there in the rooms. I'm sure they probably do, but I don't know how I will feel after the surgery. I bet I'll be bored out of my gourd after only a few days.

Friday, July 17, 2009


Oceans of emotions. So cliche.

My 10-year-old daughter rode with me from Manhattan Beach to Oxnard along PCH 1. It was a beautiful drive. We spent a few days at a friend's beach house and then drove on to Bakersfield where my parents live.

My car overheated on the drive, but we were able to make it all the way and stop at a Firestone (I knew where it was already from previous experience). After several hours of waiting and attempting to rehydrate ourselves, all the car needed was a new cap to the radiator. The seal on the old one had gone bad and with all of the heat, the fluid in the radiator had evaporated.

After this experience, we finally made it to my parent's home where I received a phone call from UCLA. It was the anesthesiologist and she was calling to ask me the usual questions about my health, previous experiences with anesthesia and that kind of thing. While I was on the phone with her, another call came in, but I didn't check to see who it was. I felt this current call was pretty important and whoever else was calling could just leave a message. He did.

After feeling pretty confident about my prospects for surgery a week later, I checked the message left on my cell phone. It was the surgeon's office. Dr. Marvin Bergsneider's assistant called to let me know that the coordinating physician, Dr. Anthony Heaney had cancelled the surgery and said I needed further testing. He wanted me to have a CT of the chest, abdomen, and pelvic areas, as well as a radioactive test done in Nuclear Medicine. I hadn't heard the results of my IPSS yet. I hadn't been to a computer all day to check my email (I had agreed to communicate with my doctors via email).

I was pretty educated about Cushing's Disease and Syndrome. I knew what this meant.

I did not have Cushing's Disease. I had Cushing's Syndrome caused by what is known as an ectopic ACTH. This means a tumor somewhere else in my body, not the pituitary, is secreting the hormone ACTH and causing me to have all the symptoms I was experiencing. Also, these tumors are most typically cancerous.

I lost it.

Another draw back.

More testing.

More time.

More questions.





Monday, July 6, 2009

Collapsing all over the place...

I forgot about a few other symptoms: emotional roller coaster, skin changes (mostly on the scalp and chest), slow healing from open wounds, bruise easily, swelling ankles, insomnia, irritability, and over all, feeling pretty crappy.

Now that I have that out, let me continue with my story.

The next step. That is what I was always thinking about. What was next? What test did I have to do next to get to the point where the doctors would say, "Yes! This surgery will take care of everything. Let's do it!"? That would not happen any time soon.

I did more testing - another MRI at UCLA, more blood tests, urine tests, a chest x-ray (prior to a procedure), went through the horrible task of donating blood to myself, and then the IPSS.

I really hate needles.

The IPSS stands for Inferior Petrosal Sinus Sampling. It is a procedure done under general anesthesia by an Interventional Neuro-Radiologist. The procedure takes at least two people to perform it. They put catheters up the groin area and guide them into the head to sample blood from both sides of the pituitary. They do this and also draw blood from the stomach. This is done several times at intervals. There is some kind of hormone that is injected after the first draws and these are all compared to each other. The ACTH in the blood will tell the doctors which side of the pituitary the tumor is on, and confirm whether there is a tumor there at all.

I went in for this procedure on Thursday April 19th. I woke up on Friday April 20th. My hands were tied down to the bed. My eyes were goopy from the stuff they put on them for surgical procedures. I was intubated. Essentially, I could not communicate other than banging my hands against the side of the bed to get someone's attention. Nobody was there. Then the nurse came in and injected something into my IV. I fell asleep again. This happened a few times. Nobody told me what was going on.

Finally, my husband, daughter, mother, AND father (that's when I knew there was something wrong) came in the room. My husband explained that the procedure had not happened. I was in the ICU and that they were going to remove the tube any time. I actually was able to communicate to my husband that I needed the inside of my right ear scratched. This was not an easy task considering I couldn't speak, barely see, and could not do much but point my finger from a hand that was tied down to the bed.

I stayed in the ICU for the rest of that day and much later was transferred to a normal room. On Saturday, I was released to go home. I had been poked and prodded all over. I had tubes all over the place.

So, why did the procedure not happen? Because my neck is so fat (because of the Cushing's), I was a hard intubation. It took the anesthesiologists an hour and a half to intubate me, after which, my left lung collapsed due to a mucus plug caused from the intubation itself. The procedure was cancelled at that point. I had a bronchoscopy instead and several chest x-rays.

I coughed up blood for two days and finally it stopped. I was put on an antibiotic and told not to go into the sunshine.

After leaving the hospital, I did end up going to the beach where my husband covered me in spray sunscreen (which attached itself like dew onto my white fuzzy hair all over my body and face), and then he covered me in a towel and hat while I laid down enjoying the sound of the ocean and the birds flying overhead.

The following Thursday, April 26th, I finally had the procedure. I was released from the hospital by noon that day. The results from the IPSS would cause another collapse, but this time, it would be of my emotions.

Friday, July 3, 2009

Testing a Rollercoaster

And the testing began. For the next several months, I would do a series of blood, urine, and saliva testing to confirm the Cushing's Syndrome/Disease. I learned a lot about Cushing's and the differences between the syndrome and the disease.

The syndrome is all of the symptoms caused by a tumor in the body, but not the pituitary, or by taking an excess amount of the drug Prednisone. The symptoms range from a moon face, buffalo hump, excess hair growth on the face, neck, back, and abdomen, acne, large purple striae (stretch marks) on the hips and breasts, heavy menstrual cycles, muscle deterioration and weakness, joint pain, slow healing and easily bruising skin, vision changes, high blood pressure, diabetes, glaucoma, excess fat around the abdomen and neck (while remaining somewhat normal at the appendages). I think there could be more, but I can't remember them now. I have virtually all of those symptoms except two that we are aware of for now: diabetes and glaucoma.

The disease has all of the same symptoms, except the cause of the symptoms comes from a pituitary tumor. The pituitary is located in the very center of the head at the base of the brain. It produces a hormone known as ACTH. ACTH flows through the blood to the adrenal glands where Cortisol is produced. The pituitary tumor produces an excess amount of ACTH, which then causes the adrenal glands to over-produce the hormone Cortisol. Cortisol acts like a defensive mechanism (fight or flight) for the body. The main reason for the difference between "disease" and "syndrome" is that the tumor in the pituitary actually takes over producing the ACTH and the pituitary either no longer does this job or does it minimally. With the syndrome, the pituitary gland is still producing ACTH, but something else is also - usually what is known as an "ectopic tumor."

The testing to find the pituitary tumor included two MRIs (Magnetic Resonance Imaging). Unfortunately, the size of the tumors in the pituitary are usually so small, they are undetectable by imaging alone. I had one MRI done at the University of Utah and another done at UCLA. Neither found the tumor, although the first was thought to have "something" possibly there.

On March 17th, I had gone to UCLA to visit with two doctors about surgery to remove the pituitary tumor and get treatment for the Cushing's Disease. That is what the doctors all thought I had. Cushing's is rare as it is and the most common form of it is from a pituitary tumor. My blood, urine, and saliva tests showed an elevated ACTH and Cortisol nearly 1000 times that of what is considered normal.

It was about this time that I couldn't stand the losing of my hair anymore, so I had my husband buzz it one morning. Three-eighths inch. It felt good, but I felt also that I looked even more like a turtle than before.