Monday, November 30, 2009

Pressed below normal

I cry every day.

Everything seems to set off the crying. I saw some Christmas lights on houses Friday night - crying. I heard a song on the radio - crying. I look in the mirror - crying. Laying in bed - crying.

I'm angry.

I'm trying to make everything normal. I want the things around me to be normal. I still do not know completely what normal is. That is another problem. I can't remember what it's like to be normal. To be - me.

I'm forgetting.

I don't do anything fun anymore. I have forgotten what it is like to sit in a desk at school without feeling squished. I have forgotten what it felt like to be fit and healthy. I have forgotten what it is like to have fun and be free.

Pressed below normal.

I am not sure about my future. I feel like I have no real plan of action. I cannot look to my future beyond a few weeks. Everything is so unsure.

I am trying to keep myself busy. If I can just stay busy or occupied, I don't think about things so much. If I stay up late enough, I can sleep the whole night through. Once I wake up, I start thinking and then it is all over with. I may as well get up and do something productive.

Thursday, November 26, 2009

My motto.

Wednesday, November 25, 2009

1 to 2 percent of 1 to 2 percent = rare

I have metastatic lung cancer - carcinoid tumor in the lymph node. It traveled from the tumor that was in my lung before. Only 1 to 2 percent of all lung cancers are carcinoid tumors. Of those, only 1 to 2 percent cause Cushing's syndrome.

The oncologist we met with yesterday, and his nurse practitioner, talked about some of our options for treatment. He would like to get the opinion from 11 others who can provide information on these types of treatments for what I have. While they haven't seen someone like me before, the oncologist would like a consensus on a plan.

For now, the options are (1) surgery to remove the tumor - which would be done by my previous surgeon, but this time via a small incision at the throat area; then (2) radiation therapy, possibly in conjunction with chemotherapy. There are a few options for radiation therapy. One is a three day treatment that is extremely intensive, known as SBRT. The other option is a basic radiation therapy that is five days a week for about six weeks.

I am keeping my surgery date of Friday December 11th with Dr. Bull. I am supposed to hear from the oncologist, Dr. Akerley, within the next week with the final decision on treatment. Also, I should then hear from my endocrinologist, Dr. Jones, on the postsurgical treatment for Cushing's.

I have really tried to stay educated about my illnesses, learning about causes, treatments and recovery. Reading other people's stories, journal articles, and websites associated with hospitals and organizations. This helps tremendously when I go see doctors. I can ask questions and voice my concerns based on this information. I notice how the doctors and nurses treat me differently because of how I present myself to them. They can see I have the capability to understand and communicate in an educated way. I think this makes them more comfortable to give me more information than they may another patient. I can take it.

Friday, November 20, 2009

Locked Up

A year ago or so, I had lost about 20 pounds with a lot of effort. I was very dedicated to the Nutriystem diet (it works really well and the food is really good). I worked out three times a week at the field house on campus. A 15 minute aerobic warm up on an elliptical machine, then two rounds on the circuit training system, 50 crunches from the front and on each side, pelvic tilts, and yoga stretches. I had been riding my bike 8 miles each way to and from work before I started at the field house. I was feeling really good.

I started out last fall weighing about 193 pounds. By Thanksgiving, I was down to 170. I blamed myself for my weight when I started. I just couldn't understand how my face was still so round and with 450 crunches per week why my abs weren't looking like they felt - tight and strong.

I have a locker on the bottom floor of my office building. It has a body towel, floor towel, hair dryer, brush, flat iron (because I had longer hair back then), shampoo, conditioner, body wash, body scrub sponge, body lotion, mousse, hairspray, Q-tips, and a face lotion. I haven't opened that locker in nearly a year. I wonder if the stuff inside is good?

Will I use any of that again? When will I feel that way again? How hard will I have to work to get to my desired weight and health?

I don't know.

I sometimes think I will never feel good again. I don't always believe that I will be cured. I feel just as locked up as the stuff in my locker. I wonder when I'm getting out and if I'll still be good.

Friday, November 13, 2009


The oncologist's scheduling office called yesterday to set up an appointment for me to come and see Dr. Akerley at the Huntsman Cancer Institute on Tuesday November 24th. I'm not concerned that the appointment is so far out (considering how long I have been going through all of this as it is). I was concerned that I would not get into surgery when I wanted to, however.

This morning, to put myself at ease, I called the surgeon's office to find out if Dr. Bull would be available to do a surgery on Friday December 11th. His assistant knew who I was when I called. I told her I was going to need surgery again and that I was going to see Dr. Akerley on the 24th. She set up an appointment for me to see Dr. Bull on the 30th and put me on the surgery book for the 11th.

There are some things I know right now: Dr. Akerley will refer me to Dr. Bull for some kind of surgery. I know Dr. Bull and trust him; we have a history. I know now that I will be having a surgery on Friday December 11th at the University of Utah Hospital by Dr. Bull to remove a tumor from my right main stem bronchus.

What I don't know: How Dr. Bull will remove the tumor from my right main stem bronchus.

It has to come out, that is another known. At this point, it can't be worse than my last surgery. I just hope that it is the final surgery.

Knowing what I do - having a plan - is a major comfort and will get me through the next four weeks.

Thursday, November 12, 2009

The Culprit

My endocrinologist called me on Tuesday to tell me the results of my tests from last week. I have a 11 X 7 mm carcinoid tumor in my right main stem bronchus. Apparently, it glowed.

The doctor seemed very pleased with the finding. That comforted me a lot. I have been in great spirits for the last few days.

He has referred me to consult with an oncologist at the Huntsman Cancer Hospital - Dr. Akerley. Now, I will wait to hear from him so we can plan for the appropriate way to get rid of the tumor - what type of surgery I'll need. I have an appointment to see him on the 24th of November, but hopefully we will be able to resolve this over the phone. He refers people who need thoracic surgery to Dr. Bull, the same surgeon who did my lobectomy in July. That is comforting, too.

I've talked with my professors about needing to finish the semester a little early so I can have surgery and recover enough before spring term begins. They are all very supportive.

I don't consider this a set back. I just figure it is a forced break during the usually crazy holidays. I'll start and finish my Christmas shopping in the next few weeks, finish the semester, then have surgery. Hopefully I can have surgery on Friday December 11th. It will have been 17 weeks exactly since the other surgery. I pray this will be the last and I will be sick as a dog in the hospital - which would mean the Cushing's is gone and I can move on to a true recovery!!

Friday, November 6, 2009

Tests suck. They just do.

Wednesday morning I was injected via IV with a radioactive agent. Went back later that day for a short scan (about 15 minutes) of the abdomen and pelvis. At lunch in between around 12:30. Last meal until 7 p.m. Thursday. Long scans (3 @ 40 minutes each) Thursday afternoon, then I started drinking contrast for my CT scan at 5 p.m. After a three step bowel prep Wednesday night, all day on Thursday it did it's job. Drinking contrast hit my stomach and didn't all stay. Around 4:30 p.m. on Thursday, I threw up. No good. They told me I didn't need to drink anymore, which was good because if I had I would had just thrown up more. I was not feeling good at all. I was taken back, changed into the gorgeous gowns and pants provided, then brought back to the CT machine. I laid there while the techs tried to find a good vein for an IV. Another one. After beating the crud out of my hands and arms, one tech found a vein. They injected me with another contrast, twice (once for my head and once for the rest of my body).

By the time I left the hospital, I was weak and sick feeling. Craig took me to dinner where I ate very slowly and drank a lot of liquid. Today, I am home to recover.

Wednesday, November 4, 2009

A Boxing Match

I realized this morning on my way into work what it really means to fight an illness. It is more than the medicine and treatments to resolve the physical illness. It is also the mental and internal strength of the individual to see a future without the illness and combat the side effects of the medicines, treatments, and illness itself.

I'm not as strong as I may have seemed or have been in the past. I have fear and I cry and I feel sorry for myself sometimes. I hate needles. I hate looking at myself in the mirror. I am embarrassed about my body and what I look like. I feel self conscious when I eat in restaurants, like people are thinking I don't need to be eating food. I worry about my diabetes and high blood pressure - worried that I have had it longer than I thought I would and don't know if it is having other effects on me that will stick around after I get rid of the Cushing's.

With all of these added stresses, I still look forward. I look forward to my life goals. Until someone tells me I can't, I will continue to do so. This Cushing's syndrome will not get the best of me. I will combat it until it is gone, no matter how long it takes.

I will be my own superhero. I will save my own life.

Sunday, November 1, 2009

The Future

About a week ago I was looking toward my future. My family's future. See, I've been going to school for the last four years to get a bachelor of science degree in political science and mass communication with an emphasis is public relations at the University of Utah. I had just started looking at jobs across the U.S. I am supposed to register for my last semester on November 10th at 7 p.m.

Last Wednesday, I got the bad news (below) that I still have Cushing's and must have another source somewhere in my body. Suddenly, my future became blurred. So unclear. So - unpredictable.

How can I possibly plan? What future do I look to? I am going to need surgery. I have a tumor somewhere in my body. This is known. Where is it? Possibly in my left apex (lung). A little tumor was seen there on my last CT Scan in May, but it didn't light up like the one on the right (that I had removed).

Now I start with all of the "ifs" and "next steps." I thought I was done with this! This is crazy. How can I be here again? I don't want to speculate about my health and the possible treatments. I don't want to look too far into my future right now. I'm afraid. Afraid of being disappointed, misled, or unprepared.

I'm afraid the news is going to be worse than I think. I'm afraid I won't be able to have surgery between semesters so I can start spring in January to finish and graduate on time. Would my lungs be able to handle another intubation so soon after the last surgery? Is my right lung strong enough for this if it has to support my breathing while surgery is done on my left lung? How much lung capacity do I have available to lose? I don't know.

That is the problem. A week ago, I was so sure about the direction of my future and how I was going to get there. Now I am lost and confused, among a myriad of other feelings.

I am fortunate to have so many good friends and close family that give me a tremendous amount of support and love.

While my future is unclear right now, I am still grateful for the possibility of a cure. Last Friday I saw a woman at the university making her way to the bus stop. She had a backpack on and walked in a way that is almost impossible to describe as it is in no way natural - in humans or any other living thing. She had orthopedic crutches - the kind that wrap around your forearms with handles. She moved along like this was not a new thing. She's probably been like this for most or all of her life. She will probably never be cured. Yet - there she was, moving on with her life, going to school and living. I don't know her and may never see her again, but she reminded me that the future is not predictable, no matter how much we plan for it. The future may not be what we expect or controllable, but it will happen no matter what. It is the manner in which we approach it that determines how it changes us. Does it make us stronger or wiser? Does it get us down and make us weaker?