Friday, February 26, 2010

Just say no.

I had the octreotide scan this week. Tuesday I went in at 10:30 a.m. for the injection of the radioactive agent. I asked them to leave the IV in so I wouldn't have to get poked again the next evening for the CT scan. It was weird sleeping with the IV in - I don't know why since I'd slept with all kinds of tubes in me at the hospital.

I ate an early lunch of potato leak soup at 11:30 a.m. Tuesday. That was my last solid food until Wednesday at 8:30 p.m. It was awful. I had my short scan (2 ten minute scans) on Tuesday afternoon. They were easy. I almost fell asleep they were so easy. Wednesday I had an appointment with Dr. Jones at 10:00 a.m. He lowered my prescription for Hydrocortisone from 60 mg to 50 mg per day. We talked about the chemotherapy and radiation. Because I will need a dose of steroids each chemotherapy injection, my progress in tapering will slow. The steroids at chemotherapy are to help with nausea.

Wednesday afternoon, I went to the hospital for my scans. I got there at 12:30 to pick up my two bottles of contrast so they could be refrigerated in Nuclear Medicine. My appointment was at 1:00 p.m. They were running behind because of some last minute inpatient scans that needed to be done. I didn't get in until just after 2:00 p.m. This meant I would not be able to start drinking the contrast for my 5 p.m. CT scan on time. The scans weren't too bad. My arms were hurting from laying above my head for 45 minutes each scan. I got through it.

At 4:30 p.m. I was finally done with the scans, but now way too late to do a 5 p.m. scan. You have to start drinking the contrast an hour and a half before the scan. They rescheduled me for at the hospital (I was going somewhere else before) for 6 p.m. I started drinking the contrast and knew it was not going to be good. Around 5 p.m., I went to the guy behind the counter and told him there was no way I was going to be able to drink all of the contrast. I asked him whether they would rather have me drink it all and throw it up OR drink some and still have it in me when I have the scan. They asked me to just drink a few sips every 15 minutes or so. I did.

Craig and Halle came about 6:20 p.m. and sat with me while I waited. Apparently the CT machine at the Huntsman Cancer Institute broke down and they sent all of their patients down to the hospital. Again, I had to wait beyond my appointment time. Around 7 p.m. I finally got taken back for my scan. As I was walking back with the nurse, she went over the scans they would be doing, my abdomen and pelvis. Hmm? No. I'm pretty sure I'm supposed to also have my chest done. The nurse argued that the orders did not include the chest. I told her I have lung cancer and I'm pretty sure they need my chest scanned. She called and got the order corrected.

Luckily my IV still worked so they didn't have to poke me again. This was the only positive thing about the entire process. When the scan was over, I went to change back into my clothes again. As soon as I came out, I went into the bathroom and threw up. Craig came in and helped me. Another public bathroom throw up episode. Yuck. Actually, that bathroom was cleaner than mine at home. We were in a funny little part of the hospital - a room that had a dressing room, bathroom, and waiting room all in one kind of. Anyway, I wasn't feeling that well.

Craig asked what I wanted for dinner. I had been thinking about it and knew exactly what I wanted and from where. Little America diner: Roast Baron of Beef with Gravy instead of Au Jus, Salad with Ranch Dressing, Crackers, and and Iced Tea. At 8:30 p.m., that's what I was eating. The mashed potatoes were the best. I started having breathing problems at dinner.

We got home and I knew I wouldn't be going anywhere the next day. Craig suggested that Halle stay home with me the next day. She did. Poor thing. She had to hear me throw up in our bathroom a few times. She took really good care of me yesterday. I ate a little dinner - hot beef sandwiches with mashed potatoes (they just sound so good and easy on the tummy). I had to resist the temptation to throw up again. It was hard.

Today, I am home again but Halle is at school. I'm just trying to feel better. I really hope I don't ever get asked to do that test again. I won't do it again. I'll have to respectfully decline the opportunity. If the doctor asks why I won't do it - I'll ask them to go and give it a try first, then let me know how important they think it is versus the feeling of going to hell and back again. And then, if they decide I should still do it - I'll say no.

Tuesday, February 16, 2010

Building up.

Life is interesting. I look back at my life, all nearly 36 years of it, and wonder if I'm supposed to do something great. All of these experiences I've had in my short life so far - have I gone through all of it for a greater purpose? Am I supposed to help others who suffer through similar situations? Am I supposed to try and make things better?

People often ask me how I do it all: work, school, mom, wife, health problems, etc.

I think about everything that's happened to me and realize my life has been building up to this event. Just like it has over the last year - If I had been told last January when I went to my doctor for hair loss that I had the rarest form of lung cancer in the world that also happened to cause a funny, rare syndrome called Cushing's, I would had probably went into deep depression - instead, I got it gradually throughout the year.

So here I am. This is me. I cannot, and I never have, let my past be an embarrassment or lost, no matter how bad it was. What, you may wonder, could she had gone through that could be so bad? Here it is, in quick synopsis since this isn't a novel:

Grew up in a physically abusive home - father (I use that word loosely here) beat my mother and me (with a razor strap). My little brother eventually threw it in the big garbage can in the alley.

My parents finally divorced when I finished 8th grade.

At the same time my parents were divorcing, I was kidnapped, raped, and left in a field out in the middle of nowhere. I was fourteen. It's a long story about how I got back home, but I did. The men that did this are still out there.

I moved out on my own when I was nineteen to Salt Lake City. At one point I had no money for food. All I had was a supersized boxed of cornflakes and a giant can of powdered Country Time Lemonade. Yes. I actually tried cooking the cornflakes in lemonade. No. I did not eat it.

I got married at 24 and had Halle the same year.

I got a job in the OB/GYN Department at the University of Utah in 2001 working in the file room. It was an entry level job and I considered it exactly that. A few months later, I became an executive secretary for a doctor.

Over the last nine years I have been at the University of Utah, I have changed jobs seven times within four departments, all in the sciences.

In October 2004, I fulfilled one of my dreams of going to New York with my husband Craig. It made me realize that I wanted more out of life.

Over the following months, we decided me pursuing a degree would help in achieving that goal of getting "more out of life."

I found out that I could get a scholarship through my Indian Tribe. So I applied. I got it. So, I came up with a plan to finish a Bachelor's Degree in five years.

With a year and a half left before graduating, I found out I was sick. You know the story from here.

Now, I'm a few months away from graduating with a Bachelor of Science in Mass Communication with an emphasis in Public Relations and in Political Science - a dual major. I start radiation and chemotherapy on March 8th.

I'll graduate on Friday May 7th and start my last three-day round of chemotherapy on Monday May 10th.

So, you could say I've been building up to these events in my life. Could I help others? Is that what all of this has been for? I just hope it's been for something.

Tuesday, February 9, 2010

Long time, no news

I haven't written in a while because there isn't a lot to say.

I confirmed with my endocrinologist that the pain I am experiencing, and it has been quite dramatic, is caused from the lack of cortisol in my body. The hydrocortisone I am taking really does only stay in the bloodstream for about an hour. I'm taking in one day about three times as much as the normal person naturally creates.

Sunday night was the worst so far. My husband helped me to bed. I cried. It was awful. I rub my legs against each other to try and find comfort. I rub my arms, head, chest, shoulders, neck and as much of my back as I can reach. I wiggle and move constantly trying to relieve the pain.

The medication gives me diarrhea. I have a decreased appetite. My skin is clearer. I still haven't lost much weight.

At this point, I am fighting two battles: Cushing's and Cancer.

With one medication, the steroid, I will conquer Cushing's syndrome.

In a few weeks, I will begin the final chapter of my battle against cancer.

The radiation oncologist said the radioactive agent needed for the octreotide scan is expected to become available here in mid-February. Whether it is or not, I have my appointment with her to do the radiation planning session on Monday February 22nd, I think. After that, it takes about 7 to 10 days to get the plan completed and start the therapy.

So, for now, it's just "deal with it" and move on. There's nothing else I can do, so why worry about it?

Monday, February 1, 2010

Ow. I must be getting better.

My endocrinologist, Dr. Jones, apologized when I saw him last week. He said he was very happy when I told him that I had pain and discomfort in my arms and legs after the last taper of steroids. He explained that the pain meant the only Cushing's I was experiencing was being caused from the steroid itself, not me. He said that with the taper, I should feel that kind of pain because the cortisol is not supporting the Cushing's. The pain means the Cushing's symptoms are leaving my body. That is good.

Well, my doctor will be ecstatic to find out how much pain and discomfort I am in everyday now that I have changed to a different steroid. I take 40 mg hydrocortisone each morning around 7:30, and then I take 20 mg in the afternoon around 4 p.m. This steroid only lasts in the body for about an hour and I can confirm that.

Around 9:00 a.m., my head starts to ache (all over - face, head, and neck). By 9:30 a.m., my body feels like I have the flu - aches all over. Joint pain has been prevalent. My knees and ankles, hips, back, neck, shoulders, and elbows: ow. By about 10:30 or so, I am usually feeling well enough to do things again. It all starts up again about the time I get home at night. Of course, I'm still recovering from the surgery itself. My right shoulder, side, breast, and back all have their pains and sparklers.

I find out on Wednesday if I am going to have to do the Octreotide Scan or not. I hope we can just get started on the therapy. I really hate that test.

In a nutshell, if pain means I'm getting better, then I expect to be in perfect health very soon.