1974 to Today

It's been a while.

2011-04-18T20:20:00.003-06:00

It's been months since my last post. I guess that's what happens when you're living your life. You get busy. Busy doing the things that you want to do, rather than what you have to do to stay alive. The word live is right inside alive, of course. I'm alive, so now I live. I live unlike I did before.

So, here is the update and details of my recovery. Yep. I'm still recovering and still on medicines, even though we tried to get off of them altogether a few months ago.

Things I can't wait to get back to doing:

- breathing without a tube in my nose: SUCCESS - tube and O2 equipment is out of the house. Finally!

- sleeping in my bed next to my husband: SUCCESS - and success...

- cooking: SUCCESS - loving every meal I make!!

- pushing a grocery cart, not sitting in one: SUCCESS - getting the shopping done every week without a backwards glance at the electric cart!!

- exercising like I used to: WORKING ON IT. Just exercised officially for the first time today. It's what made me want to write.

- mini-triathlon: NOT YET. Maybe in a few years. Before I'm 40?

- riding a bike: NOT YET. I expect to take a short ride or two with my family this summer. Somewhere level and close to home.

- walking to class without feeling winded: UMMM. Never got to that point while I was still in school. (See later answers...)

- focusing on school: SUCCESS - Finished my BS in Political Science last May, then my BS in Mass Comm in December! Woohoo!

- seeing fewer doctors: NOT YET. This will be a while. I still see an Internist, Endocrinologist, Oncologist, and Radiation Oncologist.

- looking for jobs in Manhattan: LOOKED. Realized I need to be here close to my doctors. Also, I want to be able to afford to enjoy life working only one job.

- working on my CV and cover letters: SUCCESS - Easiest job application ever!! I sent in my worked over resume (thanks to my friend Kathleen) and ended up getting an awesome position in my fields! AWESOME!!

- working on my website - SUCCESS - Actually taught a few web design classes last fall at the University of Utah. I still "own" the website: http://teach.utah.edu.

- having dinner parties - SUCCESS - I had my first post-cancer/Cushings dinner party in late February. It was a lot of fun and we will definitely be having more this summer in the back yard! (Could not had done that without my husband's help - plus, he makes parties fun.)

- cleaning my house - AS SUCCESSFUL AS IT'S GOING TO GET... :) (looked into a house cleaning service recently, not because I can't, but because I really don't like to.)

- helping at my daughter's school - NOT YET: Just reminded my daughter. She asked "why do you want to help at my school?" I said, "because it's one of my goals, now quit asking silly questions!"

- going out with friends - SUCCESS - Not nearly often enough, but I have managed to get out for dinners, movies, coffee, etc. I'm not terribly close to my girlfriends. I never have had good luck with girlfriends. Most of my friends, from a very early age, were boys. I hope to do more with the girlfriends I do have, despite our lack of closeness.

- going on dates with my husband - NOT REALLY. It's all in the planning and that is something we just don't do.

- continuing to create new family traditions - SUCCESS: My favorite new tradition is related just to summer. Sleeping on our back patio, all three of us, on a weekend night after bbq'ing, watching a movie on the big flat screen we bring outside to put on the bar while we sit in camp chairs around our fire pit sipping a cool drink.

- Monday Night Dinners - SUCCESS - But not anymore. We're saving money and trying to eat healthier. Now we only eat what we want (whatever we want) on Sundays. It's healthier and we save money. It's a change in my goal, but I couldn't be happier with it!

- polar bear club - NEXT YEAR FOR SURE!!

- shopping for stylish clothing - SUPER SUCCESS!! Day at Nordstroms. The thing is, I need to go again; and it's actual NEED! Losing weight is the greatest excuse for shopping sprees!

- finding a style (should happen before the previous item) - SUCCESS: I have found that whatever fits and looks good is my style.

- dancing - SUCCESS: Yes. It's usually by myself in the kitchen with Katy Perry on my iPod.

- visiting friends (some have had babies in the last year and I haven't seen them at all!) - SUPER FAILURE. I've seen a few of my friends (lunch visits or randomly at Target during the holidays). I have not put forth the effort I should. My biggest problem when it comes to friends.

- traveling for vacation - SUCCESS: Still California, but visiting without being poked with a needle is a nice vacation.

- fishing - PLANNED: I was supposed to go fly fishing with my dad for my birthday last month but it was just too freezing cold and we were just worried about me physically handling that much.

- camping (I've never been, but would like to go some time) - SORT OF. The combination of the patio experience (previously explained) and another one of our Sunday experiences during the summer of going up the canyon for campfire dinners works for me!

- hiking - NOPE. I need to work on my endurance. Then I'll give it a try.

- snowshoeing!! (I have missed the last two winters and I love to snowshoe - fun and a great workout!) STILL MISSING IT!

- shopping with my tween daughter - SUCCESS: The mall is a very entertaining place to be with your preteen daughter.

- playing Wii with my daughter (I'm horrible mostly, but it's time spent with her) - SUCCESS! Post chemo/radiation recovery last summer I spent some time working the Wii on Super Mario Bros.

- showing my daughter what it means to be a woman - ONLY TIME WILL TELL. I work at this every day. I think some things sink in and other things get lost in translation (or eaten up in some dark black hole in space).

- gardening (flowers and plants - I've given up on vegetables/fruits because Craig loves it so much) - PLANNED: I'll be growing some pumpkins this summer! Hopefully planting out the front beds too!

- home maintenance and decorating - PLANNED: Dining room, bedrooms, patio, painting house (supervising of course), and painting something to go above the fireplace!

- bending over to lace up shoes - CHECK! Wore tennis shoes last Saturday for the first time in a few years.

- seeing my feet when standing - SUPER CHECK! I need another pedicure. It must be close to summer.

- sitting in those little desks at school without feeling like I'm being cut in half - WHO KNOWS? Never got to that point. My last class at the University of Utah was in an auditorium with nice padded seats. I fit in those pretty well!

- eating an apple without slicing it up first, same thing with a carrot - SUCCESS! My braces came off February 16, 2010.

- flossing my teeth in 2 or 3 minutes, rather than 20 or 30 (threading between braces takes a long, long time!) - SUCCESS!

- wearing necklaces - SUCCESS!

- swimming - SUCCESS! Tonight was the first true use of swimming as an exercise. In the last month or so, we've gone swimming as a family and jumped off the diving board too. I raced my 12 year old daughter down and back and won! Of course, when I got back, Craig was there to keep me from drowning while I caught my breath. I totally kicked her butt!

- running - NOPE. I think this will happen in time, but it will be a while.

- finding my abs and butt - BUTT FOUND. Abs are still hiding.

- taking a family picture - SUCCESS. Not necessarily happy about it though. My husband's family took a big family picture last summer. I was still bald and wore a pretty scarf and a big smile.

- evening walks after dinner - SUCCESS. Well, we did it last summer and just started this year.

- caring for friends, family and neighbors who may need me - TOTAL FAILURE. I have to say that I knew it would happen, I just didn't think I would be one of those people who would be doing it. My friend was in the hospital after a bad skiing accident. I was there with my friend, his wife, while he was in surgery. I went to visit once afterward while he was still there. I told him to not be surprised when the visits from people started to deteriorate. It was natural. It happened to me, but I was determined not to be one of those that faded. Months went by before I saw him again. Crappy friend I am.

- planning graduation parties! SUCCESS! My family threw me a graduation party last May in California. My husband is taking me to see U2 in Salt Lake City next month for graduation. It should had been last year, but Bono had emergency back surgery. That's okay with me though. I'll probably enjoy it a lot more this year now that I'm healthier!

- driving my car - SUCCESS! I love gold leader...

- washing my car (inside and out) - SUCCESS! I love gold leader...

- building more websites for people on the side - WELL.... Not really so interested in that anymore. Time I guess.

- go to the zoo - NOT YET. Requires a lot of walking. I don't think I'm quite there yet.

- walk through a museum - NOT YET. I would like to do that though.

- being told I have a sexy body - SUCCESS! My husband tells me all of the time. I actually believe him! I'm looking better and better all the time. I don't look like I used to, but, then again, I'm not who I used to be.

My funeral

2010-08-18T22:17:00.003-06:00

I died and nobody told me.

I sat looking at pictures of me from before I got sick. I don't look like me anymore. I think differently too. I've gone through so much in the last few years. I really can't remember what it was like before being sick.

I saw a picture of me helping Halle open gifts at her first birthday party. You know that part of your neck up front you can see that sticks out on each side of the trachea? I used to be able to see that. I tried really hard while standing in front of a mirror to make that happen again. I couldn't even force it. No matter what I did, my neck just remained this pudgy thing with a round head on top.

I had braces and no longer have the gap in my front teeth like I used to.

I graduated from college and have had so many great opportunities laid out before me.

But the reality is: I died and nobody told me. There was no funeral and nobody sent flowers or set up one of those funds at the bank to give to my favorite charity in lieu of the flowers. I didn't see any kind of obituary and as far as I know, I wasn't buried. I just died and then disappeared, very slowly over a long period of time.

I kind of think of it like being in a coma, unable to recognize what's happening to you. Right now, this very minute while I write this with tears blurring my view of the screen, I am remembering back to being in the hospital after the first surgery and seeing myself walking through the halls in a circle, pushing a tank of oxygen and my heart monitor on wheels with my ass hanging out the back of my ugly blue gown. It's been like a dream, one that I'm not convinced I've awakened from yet.

I died. I just know I did. How else can this be happening?

Blame

2010-07-17T14:39:00.002-06:00

Why do we blame? To make ourselves feel better I guess. It gives us an excuse. It's a way to relieve yourself of guilt.

There isn't anyone to blame for me being sick. I can't point a finger to someone or something else and say "This is all your fault! Why did you do this to me?"

Frustrating.

At a recent doctor appointment I expressed my concern that I didn't know when I would feel good enough to work out again. My doctor gently reminded me that I currently have medication induced Cushings and that I would probably not feel good enough for another year. A year?!?!? I don't know if I can hang that long. Hasn't this journey taken long enough already? I guess not.

So, with nobody to blame and no guilt to be felt, I don't know how to feel about this. I'm mad. I know that. I feel somewhat helpless as there isn't a single thing I can do to make this go faster or become easier. It's like a waiting game.

Progress

2010-06-15T17:41:00.002-06:00

I'm done with chemotherapy and radiation. I've graduated from college. I'm back to working full time at the University of Utah. I'm still losing my hair and fighting fatigue.

I've commented before about reactions I get from people that see my baldness. Yesterday a woman asked me if I was scared. No, I said. Why should I be? I could be. A lot of people are in my situation. Would being scared change anything? Would it make me better if I was still sick? No. Being scare won't change anything. That's why I'm not scared. Being scared takes time and energy, neither of which I want to waste.

What customer service!

2010-05-10T16:51:00.002-06:00

I received a call on my home phone this afternoon. I saw "Lamb's Grill" show up on my television caller ID and thought how odd that was. This is the restaurant we used to go to religiously on Monday nights until I started chemotherapy. We haven't been in months now and it has been missed. We always felt welcome. They saved us a booth in the corner every Monday night, whether we came or not. I would usually meet Craig and Halle there after school. They would be late because they got dressed up and brought a bottle of wine.

It was them on the phone. I recognized the voice of the lady who sat us each week. One of our many servers, Kat, found our phone number and they called. Only to see how I was doing. This was our conversation:

Heather - "Hello."

Lamb's - "Is this Heather Rasmussen?"

Heather - "Yes. This is Heather Rasmussen."

Lamb's - "The Heather Rasmussen that used to bring her daughter Halle (Holly) to Lamb's Grill?"

Heather - "Yes. That's me."

Lamb's - "How are you doing? We've been worried about you."

Heather - "I've been okay, but having a harder time since I started chemotherapy. It's been kind of tough on me."

Lamb's - "We're just glad to know you're still with us. We've all been so worried."

She then went on to explain how she knows this is such an odd call and they were worried about calling the wrong Rasmussen household.

That was it. They were just checking on me. Wow.

I told Craig, so now we're going there for dinner tonight. It is Monday night you know...

Busy being sick.

2010-05-06T07:47:00.002-06:00

I've been busy being sick. Sorry.

I've become quite acquainted with the porcelain princess recently. I used to call it that back in the day of horrid hangovers, but now it's just a title bestowed upon the receptacle through which I poor my innards and stare relentlessly at while dripping from the various holes in my face. It's been a journey.

I've gone in three times to the doctor to have an IV, once being admitted to the hospital. I'm better now. Eating anyway. That's always a good sign of improvement.

I am well enough to take two final exams today. Tomorrow I graduate. Next week, more torture in the form of chemotherapy. Always an adventure. That's my life.

So, I've been a little preoccupied lately. Please forgive me. I've been busy being sick.

What will life be like?

2010-04-06T21:39:00.002-06:00

I took my midterm on Friday after attending class. I did it. I had studied, so I was prepared. For the test. I was prepared for the test.

Day five (post two) of chemotherapy. I thought I was soooo smart! I really thought I had the nausea under control. I had started taking the Zofran the morning of the first day and as directed after that: twice a day. During class on Friday, I started to feel really bad. I took my exam afterward and did it in 30 minutes. Then I went to wait for the professor to return. His office door was closed, I had knocked without answer. I started shaking. Another professor I had taken classes from previously asked if I was okay, was I getting ready to take an exam and just nervous. I told him I had already taken the exam and wasn't feeling that good. He asked what I needed and helped me out. My stuff was in my professor's office, so I couldn't leave without getting in there. Someone from the main office came and opened the professor's door. He was in there the whole time. All 20 minutes of me just sitting out there dying and waiting for him to return! My heart slumped inside of me.

I went home to be sick. I was nauseated. For four days. I ate and threw up, ate and threw up, ... It was a fun Easter weekend. The first time in my daughter's life I didn't buy her an Easter outfit, put together her basket, hide the eggs, and do something fun with her.

On Monday I went with Craig and Halle to radiation therapy. They wouldn't let me leave because I was dehydrated. Apparently I was so dehydrated that I took in two liters of IV fluid and still didn't have to pee. They let me go home. I started taking the Compazine. It worked. I ate dinner that night. Today, a little breakfast and some lunch. Dinner was tri-tip, pea salad and spaghetti marinara. I didn't eat much, but it did stay!

So, a rough few days. I'm feeling better now. My cap and gown are purchased. The graduation announcements are on their way via UPS. Next week I finish radiation therapy. A few weeks after that, I graduate from college. About a week after that - chemotherapy is done. What on earth will life be like?

Meeting the man

2010-03-29T19:49:00.002-06:00

I almost passed out this morning when my IV was being put in. I was terribly light headed. The IV was put in my left arm this time, but on the top lower part of my arm. This is nicer than last time because I can type and use both hands freely. My nurse was Laural. She was very nice.

I fell asleep in my chair with Craig by my side. At some point, Laural changed my chemo bag and Craig had to confirm it. So, when I woke up, they were changing the third bag! It was nice.

Craig and I didn't bring anything to do - we just sat there and talked. It was also nice.

When I was nearly done with my last bag of chemo, I noticed someone walk into the infusion room and go to the nurse's station. Then, he walked right over to me because when he turned around, he could tell I knew exactly who he was. Jon Huntsman Sr. Yes. This is the same man for whom the Huntsman Cancer Institute and Huntsman Cancer Hospital are named. He built these facilities in honor of his mother who died of cancer.

Mr. Huntsman was there in a well-tailored white Nordstrom dress shirt and casual slacks. His sleeves were rolled up and he had an IV in his right arm. It wasn't too obvious, but I could see it. He talked to us for a few minutes about what he was doing there and that he had to go in for surgery in 45 minutes to get rid of some melanoma. I heard him talk to the guy next to me about how he never thought he would be a four time patient in the facilities he helped develop.

I am very grateful for Mr. Huntsman and his efforts. They have given me the confidence to be treated locally. His facilities have brought in so many wonderful doctors dedicated to healing and discovery. When I found out that I had cancer, there was no question in my mind as to where I wanted to go for treatment.

Thank you Jon Huntsman Sr. for all that you have done for everyone afflicted with cancer. You can never know how you have affected our lives.

Turning 36

2010-03-24T23:16:00.002-06:00

I turn 36 on Sunday. I have a certain infatuation with the 80s. Thinking back to when I was in high school, I remember loving the 80s then too. My favorite band - Duran Duran. I don't have one of their albums and I've never seen them live. I do have a few of their songs on my iPod, however.

Speaking of my iPod - I love it. I love my iPod. It's the 16G - red. I love my car, too.

I use the free valet parking at the hospital each day when I go for radiation therapy. I love seeing my car come back to me. It's gold with darkly tinted windows and it's fully loaded. If the skies are dry, my sun roof is open. If it's freezing, I just crank the heat. I can tell the valet's like my car too by the way they drive it back to me. Also, they always park it backwards (backed in). It's the most beautiful gold Honda Civic EX - and it's odd because it's a 4-door automatic. I love it. Plus, I only have to fill my tank every other week. Super good on the gas!!

It's crazy to think that I have spent my entire 35th year dealing with this stupid illness. I was thinking about where I was a year ago. Manhattan Beach, CA. I've spent a lot of time with my mom over the last year. She's taken care of me quite a bit. Each surgery, every major test, etc.

My parents are on their way to visit me right now, driving from California. I'm excited to see them. My mom will come with me to radiation Friday. Tomorrow I have to take a midterm after radiation. Then I'll get to see my parents! Yay!

My dad has wanted to take me fly fishing for my birthday for the last few years. Last year, we said that it would have to be next year. Well, here we are and now we have to say it again. Next year.

Birthdays make us think about life - past, present, and future. Like the realization of the passing of time, birthdays mark a specific day in our lives that present the most significance to us personally. It's our day, mostly unshared. A day that makes me thankful I'm getting one at all based on my most recent history. And I am. I am very grateful just to be having another birthday. Truly a blessing.

Nausea is evil. That's what evil is. Nausea.

2010-03-16T20:37:00.002-06:00

Three days of chemotherapy and radiation. No problems at all. The first day, the nurses gave me few prescriptions for Compazine and Ativan for nausea. They said to use it when I felt like I needed it. I'm tough. I was feeling pretty good. They had just loaded me up with a mega dose of steroids via IV. Nausea was the furthest thing from my mind. In fact, I felt good enough to eat, which was amazing after how I had felt the few days before.

Well, here is some sound advice - some I need to take from myself.

1. You will not know when you need to take anti-nausea medicine until it is too late.

2. Do not wait for signs of nausea - this will make taking the anti-nausea medicine actually harder to take.

3. Don't try to brave through the nausea. You'll go crazy and think you need to be taken to the hospital for IV fluids and mental help. This is not worth it.

4. Take the medication like they suggest - but do it that afternoon. You will hopefully feel a lot less nauseated and be able to eat and drink.

These the things I did NOT do. I thought I would wait it out. I felt fine. Why should I think I would get nauseated? Plus, I have been nauseated before and made it through. By the time the nausea hit on about Saturday night (day 4), it was too late to take medicine. I felt like I would throw it up.

Yes. I wanted Craig to take me to the hospital so they would fix me up. By Sunday, I could barely walk. I just wanted to sit or lay - mostly lay. I cried. I worried. I ate ice chips and finally got to the point where I could take a pill for nausea. I started eating a few dried apricots that night. By Monday morning, I was still feeling nauseated and throwing up quite a bit, but never what I had eaten or drank. It was always the stomach bile, yellowy stuff. I started taking the pills as suggested and then, after Craig took me to radiation, where I was wheelchaired in, I was actually craving something to eat. KFCs mashed potatoes and gravy.

I continued to take the pills as directed. Craig asked what I wanted for dinner: mushu vegetable from Dragon Diner. So, that's what I had. Dessert? Lemon sour cream pie from Marie Calendar's. Later: frozen bean and cheese with green chile burrito.

Today, I've been eating and drinking almost like normal.

Here's the deal: just take the medication from the beginning. That's what I'm going to do next time to see if it works and I never have to go through this hell called nausea.

My hand looks like a specialty fruit in the grocery store.

2010-03-11T04:17:00.002-07:00

It's 4:17 a.m. I should be sleeping like any normal person. Of course, I'm not normal - I'm Heather Rasmussen.

I had my first day of chemotherapy followed by radiation. All went well. The IV is still in my right hand and covered with a little netting glove. It looks like a prickly pear found in your local grocery store. All the padding underneath makes my hand appear poofy and rounded.

Craig was with me yesterday all day. Today I will be on my own.

After days of feeling crappy, I felt pretty good yesterday after chemo, as I was told I would. I ate lunch, snacks, and dinner yesterday. Not bad for someone who again woke up feeling nausea and coughing pretty intensely.

The nurses confirmed I will lose my hair in about two weeks. They provided a binder chocked full of everything you'd ever want to know about chemotherapy. In there, it recommends shaving your head before the hair starts its departing from your head. This is supposed to increase the feeling of control and release some of the anxiety associated with losing your hair. We can't use a razor, only a shaver, because my scalp will be sensitive and I won't heal well from cuts.

I think I will have Craig do it this weekend to get it over with. I really don't want to go through seeing my hair all over the place again. Depressing.

My boss has offered me the opportunity to take a medical leave of absence and they will maintain my health insurance for me - including the cost I would had normally paid out of my check each month to maintain it. He has also offered me the opportunity to work from home, which I think I will take. The most difficult part of my day, physically, is getting to and from work and traveling around to classes. It wears me out tremendously, and that was BEFORE I started these therapies. I can only imagine what they would do to me now.

Today in chemo, I should only be there for a few hours I guess. I'll do some homework I think. There isn't much else I have going on. I have a short paper and a PR Press Kit to put together, due tonight via email to my professor. I have two midterms next week on Monday and Tuesday to study for. The review sessions are today and tomorrow, of course. Hopefully I will get the class notes today so I can study tomorrow and over the weekend.

On another note: after being so sick for a few days, I did hit that golden marker in my weight I hadn't been able to drop below in over a year (200). I've been stuck at above 201.5 lbs for so long, I thought I'd never drop below. Of course, it took being so sick I couldn't really eat for a few days to make it happen, so I'm not really considering this a breakthrough or anything. It did feel good though to see the scale read 198.5 yesterday morning. The day before it teetered between 201 and 199.5 depending on the time of day. I'm pretty sure after my ability to eat had returned yesterday that I am now comfortably above 201.5 again. That's okay. It took about 5 years to put on. I can't expect it to all shed off in a matter of months.

I must be crazy. I don't think that's a symptom though.

2010-03-09T16:05:00.002-07:00

For the last two days, I have woken up coughing. I cough so much that it causes me to throw up. I went to work yesterday, where I was told by my boss, and others insinuated through looks, that I looked ill. I soon went home. Craig brought some food home for lunch: tacos. After he left, I slept.

This morning I coughed so much, I again threw up. In fact, I threw up in my bath. Have you ever done that before? Well. Let me tell you it is gross. Luckily, I haven't been able to hold much solid food down, so it was just liquid-y. I drained the tub, refilled, rinsed my hair and got out.

I had to go to the hospital this morning for a radiation treatment verification. Basically, they drew all over my chest, which was bared to whomever walked into the room, and took a bunch of pictures. (Don't go looking for these suckers to show up on my facebook account!)

At least my cold, which is causing the cough, won't stop my starting chemotherapy tomorrow. I thought it would, but I was told that if they had to hold off doing chemotherapy on people that had a cold, people would never get therapy!

I'm missing a lot of work from being sick. I don't have any more sick or vacation leave left. I'm already set to work only 30 hours per week. I have three classes I barely attend. I'm dealing with a legal issue, my 11 year old daughter is growing up and I'm missing it, I'm trying to find a job, and with all of this - I'm trying to get better.

I'm trying to figure out what I can do to make life easier. Craig keeps telling me that if he were in charge of me, I wouldn't had started this semester at all. But he admits he doesn't know my full ability for what I can handle. In a lot of ways, I agree with him. I shouldn't had started this semester at all. But now, here I am, eight weeks into it, and really I only have five left (after my two midterms next week and spring break). I'm passing my classes. I know I can do it - but will it be worth it? After all, what good is a degree if I'm too sick to use it? But will I go back if I stop now?

I can't afford to miss any more work. I have to keep my insurance (don't even start talking to me about socialized medicine!!). I have no choice there.

I have help in my classes. If I can make it through and finish these classes, I'll be done.

I need to feel better. My endocrinologist said we could not taper so much this quickly. I think I need to taper back up so that I feel good while I'm going through this. I'm losing weight and looking better. My jeans can slip right off without unbuttoning or unzipping.

I think that until I finish chemotherapy, I should stay on the 60 mg hydrocortisone. I will ask and let you know what he says.

My body doesn't like me anymore.

2010-03-08T11:54:00.002-07:00

I don't want to be hurt again. I don't want to be stuck with another needle. I'm afraid. I don't want to do this anymore. I want to quit. Please let me quit. Please stop it from hurting me. I hurt. It hurts. I don't like it. Please make it stop. I hurt all over. My body has stopped working. It said it doesn't like me anymore, so it is quitting. I just don't want to hurt anymore. I don't. please please

please. make it stop hurting.

Progress is always good

2010-03-03T07:14:00.003-07:00

I drove up to the Huntsman Cancer Hospital yesterday for my radiation planning session. There were so many people taking care of me! I couldn't believe it and there is no way I could remember all of their names, although I can remember most (Heather, Jane, Matt, Josh, Ruth).

At my appointment I was poked eight times. I needed an IV for the CT scan, but the first two IVs didn't take. (I have such horrible veins!) I laid on the CT table with my gown open to the chest. To ensure some amount of privacy, they covered each breast with a cloth.

My doctor came in and gave me some great news: the results of my octreotide scan last week was negative! This means there is no cancerous tumor-like anything left in my chest, abdomen, or pelvic areas. Now we can proceed like planned! Thank goodness. I don't think I could had handled another hurdle in this race.

After the scanning, I was tattooed with little dots in five places. These dots, combined with the mold we created yesterday for me to lay in, will make the radiation treatments consistent, quicker, and more effective. I'll start radiation and chemotherapy one week from today.

On the Cushing's syndrome end of things, I haven't lost a lot of weight yet, but I think the weight may be redistributing. I can now take off my jeans without unbuttoning or unzipping them. My face is showing some changes too. This is all very encouraging!

Now, if math was not part of learning how to compile and analyze research, I would be a VERY happy person right now. My Quantitative Analysis in Communication class is tough. With all of my contacts in mathematics, you would think this should be easier for me! Or at least I could get good help with it.

Anyway, progress is always good. That's the direction I'm going in - forward. Now, I just need to get through therapy, graduation, and move on to our future!

Just say no.

2010-02-26T08:56:00.003-07:00

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.

Building up.

2010-02-16T22:20:00.002-07:00

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.

Long time, no news

2010-02-09T20:41:00.003-07:00

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?

Ow. I must be getting better.

2010-02-01T06:29:00.003-07:00

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.

Going Hormonal

2010-01-27T21:14:00.002-07:00

Steroids. Who knew they were so important? Today I learned something about the difference between the one I have been taking and the new prescription I was given to start tomorrow.

The steroid Dexamethasone replicates all of the symptoms of Cushing's. It is given to patients post surgery until has been determined they no longer naturally create cortisol. Dexamethasone does not interfere with naturally occurring cortisol, so it is still measurable. Once it has been determined cortisol is no longer being naturally created in your body, a change to a different steroid occurs.

The steroid Hydrocortisone only lasts in the blood stream for one hour. I'm only going to be taking it twice a day. This means my body will only be exposed to a steroid for two hours per day. The other 22 hours per day will be cortisol/steroid free, allowing my body to finally recuperate from Cushing's syndrome. This is when I should start seeing changes - finally!!!

I kept thinking there was something still wrong with me. I mean, I have lung cancer, but apparently, I don't have Cushing's anymore. My doctor said he is very confident that my Cushing's symptoms are related to taking the steroid and that I am not experiencing a naturally occurring Cushing's.

Hopefully I'll start to see changes now! That would really lift my spirits.

What can I do about it?

2010-01-24T21:02:00.002-07:00

Some people ask me how I can keep going with everything. I work 30 hours a week, take 10 credit hours at the university, grocery shop (with the help of my 11 year old daughter Halle), cook meals, and deal with lung cancer and Cushing's syndrome. What else can I do? I deal with it.

Really, there isn't a lot more I can do than what I'm already doing, so why stress about it? Life must go on. I am still alive you know!

I could cry about it. I do sometimes.

I could sit around worrying about it. Will that change anything? No. (Well, it would make me less productive in other areas of my life.)

I could waddle all up in a little ball and hide myself from the world. But then I would be alone and that's no good at all.

I could be angry. With who? For what?

There are all kinds of feelings people say they would have if they were in my shoes. Luckily they don't have to be in my shoes - their a "one size fits ONLY Heather Rasmussen." Believe me, you don't want to be in my shoes.

Really, you never know how you will react to a situation until your in it. That's why people in the military, emergency first contacts, flight attendants, etc. do training in simulated situations. This gives them at least the feeling of what it would be like to be in an emergency where their individual talents or training come into play. You can't just read about how to react and expect that will be the same as the real life experience.

This isn't how I thought I would react to having cancer. I think I thought I would do all of those things people have said they would do - cry, anger, hide away, worry (and one that nobody has mentioned - die). I thought that cancer meant I would be done for. That death was surely on the way.

When I tell people how rare my lung cancer is, they look at me like they have just seen a ghost. I immediately tell them that rare does not equal incurable. It just means that there aren't enough people like me to study, so the doctors have to kind of wing it with treating me.

So, I could do all of those things that wouldn't help my situation. But why? There are so many other things I have to take care of. Plus, aren't there more things out there to worry about (school), hide away from (negativity in the world), cry about (Haiti), or be angry about (that just raises blood pressure and a bad vibe, so I don't recommend it ever)?

My point: Don't cry over spilt milk. Clean it up and move on.

Life is like a smorgasbord.

2010-01-22T07:47:00.000-07:00

A smorgasbord is basically a Swedish version of a buffet. Since I like the word smorgasbord better than buffet, I'm using it here.

If you were to walk down a smorgasbord and take a look at all the dishes available, it can be quite intimidating. After all, you only have one plate to fill. You can only put so much food on that plate without stuff falling off all over the place and hitting the floor.

What if you knew you'd have to try all of it. Yep. All of it. Not only would you have to try it all, but you could only try it in the order it was laid out on the smorgasbord. Whether you like it or not, there it is and you are going to have to put it on your plate and eat it.

Would you want to walk around the whole smorgasbord to see what was there? Would it be encouraging or discouraging to know what you get to and have to eat?

Well, I would suggest you just take it one dish at a time. Sometimes it's better to not know what is coming. Even if you like what's coming, we all have to swallow a bitter (pill) at some point and it might be easier if it just lands on your plate with a big serving of chocolate cake and spaghetti marinara.

From the sweet and savory to the tangy and bitter, we will all taste a little of each in our lives.

I see how life is like a smorgasbord. Lot's of variety. Balance. Good yummy stuff. Icky stuff too.

Make sure to not overload your plate. Don't worry! It will always be full, even if it isn't always with what we want at the time. Eat it up and eventually, you'll get what you want.

Alert!! Nationwide Shortage of Radioactive Agent!!

2010-01-21T14:58:00.003-07:00

I met with the radiation oncologist yesterday. Craig was with me for the appointment that lasted nearly three hours. Three painful hours. Between the physical pain of being examined (I'm not sure why it hurt so badly) and the psychological pain of disappointment, I was wasted after three hours. Craig was a rock.

We talked about what radiation would involve. I'll go in for a quick CT scan of the chest and they'll tattoo marks on me where they want the beams to go. I'll lay in a mold created for my head, shoulders and back so each time I go in, I'll be in the same exact position. Each treatment takes about 15 minutes. Side effects are minimal.

So, this I expected. I thought she would talk about the radiation and side effects, duration, etc. I did not expect a delay in getting started.

I have to take a side track here for a moment so you understand what it is like to have so many doctors working on me at the same time.

------I get information about test results, plans, and other things from the other doctors who didn't come up with the plan or order the tests. Let me explain. A week ago Monday I went to my surgeon who informed me that it was okay for the oncologist to get started on the plan for radiation and chemotherapy. I said, "okay." I didn't know the plan was to have the chemotherapy for sure. It had been suggested as a possibility, but never confirmed. The next day I saw the oncologist who notified me that the surgeon had removed two, not one, cancerous tumors from my chest. Really? Yesterday, the radiation oncologist was concerned about my elevated ACTH. I had heard it was still there, but didn't know it was elevated. My endocrinologist said he wasn't concerned about it at the time, so I wasn't. Now, we get to it: the psychological disappointment.------

The radiation oncologist spoke with radiology, my oncologist, and my endocrinologist while I was in the patient room with Craig. This is why the appointment lasted for so long. She had paged them all and spoke with each about her suggestion for a plan. They all agreed. Why radiology was involved in the conversation is because they were the first, next step in my treatment. I have to get another octreotide scan. Yes. This is the same radioactive scan that made me sick last time. I only remembered how horrible the second time was this morning on my way to school.

This is how it works:

Day 1 -
2:00 p.m. Octreotide (radioactive agent) injection via IV
4:00 p.m. begin eating/drinking only fluids (including a lovely sparkling lemon flavored laxative)
6:00 p.m. liquid dinner and 3 laxative pills
10:00 p.m. insertion of "other" laxative
Nothing after midnight

Day 2 -
10:00 a.m. 20 minute scan
1:15 p.m. Pick up 2 bottles of contrast from x-ray and have placed in fridge in Nuclear Medicine.
1:30 p.m. Three 45-minute scans (chest, abdomen and pelvis) with arms laid above head. Very painful position, even with support like pillows. Luckily the use of an iPod is okay.
3:00 p.m. Begin drinking contrast, one third of a bottle every 20 minutes. (Yes. Your calculations are correct. This is impossible since I am laying on a table being scanned when this is supposed to be occurring.)
5:00 p.m. CT scan of chest, abdomen and pelvis. Use of IV for pushing through another form of contrast during the scan.

The first time I had this done, I cried for the last half of the radioactive scan. The second time, I was successful at falling asleep for portions of the radioactive scan with the help of my iPod. However, I was wasted. I didn't finish my contrast. Instead, I rushed to the bathroom in the Huntsman Radiology Clinic and threw up in the toilet. A public toilet. Gross beyond gross. It is one thing to throw up in your own toilet at home, but in a public toilet is just disgusting! I hadn't done that since I was a kid I think.

Anyway, I haven't had the best experiences with this test and I can honestly say that when the radiation oncologist told me that I had to get this done, I was thoroughly disappointed.

She also found out that there is a nationwide shortage of the octreotide agent. The radiologists hope to get some soon, but they have no idea when it will arrive. I should know in the next couple of weeks if it will be available. If it isn't, then we will proceed without the scan.

The whole point of the scan is to find a concentration of ACTH creating cells. Since radiation is directed at specific parts of the body, they want to make sure they are optimizing the beams radiation to the right places. Unfortunately, this also means I have to wait to start the chemotherapy because the chemo might skew the results of the scan. This means, at this point, I will not start any therapy at all for at least three weeks. This also means that my therapy will run into the time of graduation. This is the most disheartening of all.

I had such a vision of what it would be like to graduate. It seems like lately all of the things I have been looking forward to - at least my view of how they would be - are changing before my very eyes. It's not like I won't graduate still, but it just won't be the same. I hope I have the energy to walk across the stage to pick up my fake diploma. I would like to walk across two on May 7th, but I'm not sure I'll have the strength. Of course, knowing me, I'll ask someone to just drag me across or put me on their back to hoist me across, like a finish line. That is what graduation is like for me - a finish line. At this point, it isn't about winning the race, just finishing. I'm going to cross that finish line on May 7th. I promise.

This is hard.

2010-01-20T06:49:00.002-07:00

I'm gaining weight. My husband wants to go out to dinner almost every night. I think he thinks (good communication going on here) that I might be too tired to cook, so he always wants to go out. The problem is that there aren't always the best options on menus at restaurants. I also have been eating the same way for the last few years without much change in my weight. (The only exception was the few months I ate nothing but Nutrisystem. I did lose some weight then.)

So, with Cushing's syndrome or disease, a patient can eat 500 to 5000 calories in a day and it doesn't effect their size or weight. The feeling of being hungry all the time is part of Cushing's.

What happens now that I am supposedly free from Cushing's? Well, like with all things - I've become accustomed to eating a certain way for the last few years (at least) and now I need to watch what I eat because the consequences are different. My body actually processes food/calories differently now. ALSO, I'm feeling like a lazy coot. I just get enough exercise I think to not qualify me for being comatose. If I didn't go to work and class, I think I'd feel like I was in some kind of coma.

I talked to Craig and told him that we need to eat at home. I told him that I need to cook healthier and I need better options for food. As a person who loves to cook, and eat, this is really hard. I love to be creative in my cooking and thoroughly enjoy serving up fantastic meals to my family. That doesn't mean I can't be creative or serve up great meals, I just have to use healthier components.

Just because it's winter does not mean any of us have to put on a winter coat.

Silky smooth - like a baby's butt.

2010-01-18T12:09:00.002-07:00

On Saturday my husband will be shaving my head for me. I don't want to wait for it to fall out. I don't want to spend money on another haircut. Shaving it smooth with a razor and shaving cream will be the routine for the next several months. I'll let it start growing back again after I'm done with chemotherapy. I hope I can get started on the chemo soon so I will be done before school is out in May.

I'm considering a wig, but don't know how I really feel about it yet. To start off with, I will probably just wear hats I think. Some people say to wear scarves, but I don't even know how I would do it.

So. Here is a picture of my from this week. Just over five weeks out from surgery. I think I have a little less chin fat.

Argh! What a week. We get Monday off, right?

2010-01-15T05:22:00.003-07:00

Human rights are awesome. I love them. I've actually studied them, even. But, I must say I am especially excited about them after this week. Not that I've experienced some kind of human rights eye opener. No. I'm not that humble right now. If anything, I should be thanking our government for a holiday meant to remember human rights (aka - Martin Luther King Day). Believe me when I say I am looking forward to this "holiday" coming up on Monday. No work. No school. I mean, it's not like we get the family together and celebrate with some extravagant meal or anything. There aren't really any songs or decorations associated with the day. There's always shopping - stores can make a sale out of any "holiday."

I am especially excited for this coming holiday though. I think I will need the long weekend to get over this last week. Mentally and physically, it has been a rough ride.

Salt Lake City has hit a number one in the nation, but not one to be proud of. This week we had the worst air quality (dirtiest air) in the U.S. People like me aren't supposed to be out in that bad of air. I'm already compromised simply by my lack of a lobe in my right lung. I used to just have asthma and every year since I have lived here, I have used my emergency inhaler more during the January/February months than during the entire rest of the year. I didn't even have asthma at all before I moved here.

Where is Salt Lake City? Just look for the orange/red blob on the map.

So, when you have to actually leave your house to go to work and school, it makes it difficult to avoid the bad air outside. My breathing has been more labored, trying to walk to my office from my car, back to my car from my office, from my car to class, from class to my car, from my car to my... I think you get the picture. It's been a lot of walking.

I have also had a lot of pain in my incision area because I am no longer taking the day time Lortab for pain. I take about 1000 mg of Ibuprofen once or twice a day to help with it. I had forgotten about the pain there and in the shoulder after my first surgery. I have tried eating with my left hand more often, but I haven't attempted the left handed use of my mouse at work.

The mental toughness of the week is expressed thoroughly in my previous postings (radiation/chemo - not getting consumed).

So, me and my husband talked about it and and talked about it again. I have requested, and it has been approved, for me to temporarily decrease my hours at work from 40 to 30 per week. I will be going in later each day, rather than going home early. Hopefully my new schedule at work will accommodate less walking to and from my car for work and class, and also make plenty of time for therapy when that starts.

I know I'm going to feel cruddy after therapy, especially the chemo. I guess these therapies can really take it out of you. Craig will be with me for those, so he will keep it real for me. I'd probably try to squeeze in a trip to TJ Maxx or Tuesday Morning looking for discount Le Creuset between therapy and work/school. Craig will most likely force me to go home and sleep. His wiseness can be so irritating sometimes!!

Today I meet with the counselor at disability services on campus. So, okay, I guess I am a tiny bit humble. I have completely avoided this step for the last year. I just kept telling myself that I didn't have a disability, so why would I need to ask for help? I hate asking for help. It's like admitting you can't do it or something. Well, I may not be able to do it all by myself this time.

My desire to finish school is apparently greater than my need to prove I can do it on my own.

So, today I will finish this week off knowing I am on the right track to do what needs to be done to accomplish all of my goals. One of my goals has actually changed and Craig is very supportive, if not darned right excited, of it. Location, location, location. That's all I'll say about that for now. This post has already stretched on, and on, and on...

Fear of being consumed.

2010-01-13T14:13:00.003-07:00

When I was in the third grade we moved to a house with a swimming pool. I was always afraid of going into the deep end. I thought pools were connected to the ocean and that sharks could come out of there and eat me up.

The conception of reality we create in our minds can direct us in many ways. My conception of the pool being connected to the ocean led me to believe sharks were under my pool, thus I avoided that area.

The reality many of us have created in our minds of cancer patients is that they are weak, bald and dying. As I walked into the hospital yesterday (Huntsman Cancer Hospital), I saw cancer patients in wheelchairs, bald, people feeding them. It scared the hell out of me. What I saw seemed to be matching the reality of cancer patients I had created in my mind after years of being infiltrated with visuals and stories about cancer. Even the word 'cancer' is one of the most feared in the English language.

The unfortunate comparison to my story of the shark in my pool is that you can't truly avoid going into the deep end when it comes to cancer.

Just as much as I was afraid of being consumed by the shark in my pool, I am afraid of being consumed by cancer. Not the cancerous cells that may be floating around in my body. I trust the medicine and treatments will take care of that part. I'm afraid of my life being consumed by cancer - that horrible reality I have created in my mind.

The greatest lesson I have learned in college has nothing to do with theory or statistics, but rather to do with choices. Going to college has bent my mind in a way that allows for the possibility of anything, but especially through logic and reasoning. Thus, I have decided that I will change the reality in my mind about a lot of things.

First, I believe it is possible to accomplish more not because I'm super woman, but because I know I am capable. I believe in myself.

Second, I know what to expect from my cancer and therapies. With this knowledge, I will be better prepared to conquer the side effects and go through the processes with understanding how to deal with it.

Third, I see a life ahead of me that does not involve Cushing's or Cancer, but one with health and happiness.

I refuse to be consumed by cancer or Cushing's. My life is more than those things. I am more than a patient. I will always remember who I am beyond patient and human, vulnerable.

MOTHER

WIFE

DAUGHTER

FRIEND

EMPLOYEE

STUDENT

WANNA BE CHEF

SPORTS FAN

NEIGHBOR

CRAZY DRIVER

BLOGGER

FACEBOOK-ER

My fear of being consumed is no longer there. I refuse to be consumed by anything. Especially some temporary medical condition that snuck up on me. No way. Not me. I have no fear. Period.

Bzzzzzz. The pros and cons.

2010-01-12T22:22:00.003-07:00

I did it again, mostly. Today worked like I thought it would, minus the dinner portion of the night. We went to dinner instead. I needed a quiet place to talk to Craig about my doctor appointment today. I didn't want us to be interrupted with all of those things that inherently get in the way of meaningful conversation at home - like dishes, laundry, cleaning of clutter, etc.

Here's the scoop:

Apparently when the surgeon removed all of the lymph nodes in my chest there were actually two (2) tumors in there - both cancer. None of the other nodes were cancerous or had tumors. So, they appear to have gotten all of them! Good news.

My oncologist, Dr. Akerley, proceeded to tell me how rare my cancer is. Basically there are variations of cancer that go from the most common to the least common in a kind of inverted pyramid. He said my kind of cancer is the extreme tip of the bottom of the pyramid. It is so rare, there is no official name for it. He called it a neuroendocrine tumor, Cushing's tumor, or something else I forgot. He said those are just what they would describe it as, but officially there is no name for what I have. I asked if he knew what stage it was - he said it was a Stage III Cancer.

A Stage III Cancer is one where the tumors or cancer has spread to a lymph node that is no longer in the initial place the cancer started out in. So, when I just had the one tumor in my lung, that was Stage I. If the lymph node was inside the lung and had the tumor, then that would be Stage II. Because the lymph nodes with the tumors were outside of the lung, it is Stage III.

Because this is so rare, there are no studies on how to treat postoperative removal of the cancerous tumors and all of the lymph nodes. So, Dr. Akerely said they (all of the oncologists at the Huntsman Cancer Institute/Hospital) look at the treatments for the more common forms of cancer in the chest to see how successful they are. This is how they decided on my treatment. Radiation AND chemotherapy.

Next week I will meet with yet another new doctor, a Radiation Oncologist named Dr. Kokeny, I think. She was one of the doctors involved in deciding my treatment, so she knows my case well. She will build a map of my chest somehow to use for directing the radiation to the right places. The radiation will last 5 to 6 weeks and I will go five days per week.

After I have my chest all mapped out and the date for beginning radiation is set, Drs. Kokeny and Akerley will work together to arrange all of my therapies. My chemotherapy will be administered via an IV. I will go through four 3-day infusions (12 weeks). There will be three weeks between infusion sessions.

The side effects are many, some much more serious than others. For example, with the chemo, my white blood cell count will drop tremendously within about 10 days after the end of each session of treatment. During this time, I have to be extremely cautious about getting sick. If I get a temperature over 101, I have to call the hospital and rush there to be admitted, where I would then have to stay for 2 or 3 days. That's a more serious side effect I have to watch out for. The one that will definitely occur is the hair loss.

I won't be bald. The hair comes out in funny ways and my hair will just look patchy. I told Dr. Akerley that I had my husband buzz my hair last spring when I couldn't stand it any more - the losing of my hair. Luckily, I don't have a funny shaped head or anything. This is one aspect of the therapy I am least concerned about. I have a lot of hats, so that helps. Also, I will save about $50 a month + between haircuts and product. It will take no time to do my hair and it will dry in an instant!

So, I wasn't really sure if I could still go to school AND go through all of this. I mean, 12 weeks is a long time and we haven't even gotten started on that yet. School only lasts 16 weeks. I was very unsure about whether or not I could do all of this. I am not super woman, no matter how some people try to convince me I am... But I thought about it more and realized, this is not something I just want to do (going to school) but I NEED to do it.

I NEED to do something else with my time other than sit around and worry about my health all of the time. I need this chance to get away every day to focus on something else, something I have control over. Unlike work or home or health, school, for me, is totally controllable. I like it. I actually enjoy it. I'm going to stick with it and come May 7th, I will graduate from all of it - school and all the health issues I've been dealing with for almost a year now.

Success! Shall we try it again?

2010-01-12T05:19:00.003-07:00

My day yesterday turned out almost exactly how I had written it at 3 a.m. My surgeon, Dr. Bull, said my chest x-ray looked great. He examined my incision scar and said, "You heal really fast. Don't you think?" I thought, "I don't know. I have nothing to compare to really." He was very happy about the results of the surgery and my recovery. He said I could go on to whatever therapy Dr. Akerley suggests as soon as needed and that I was recovered enough from the surgery to handle such therapy.

That moves us on to today.

It worked so well yesterday, I thought I would try it again this morning.

I'm up. Probably not going back to bed this morning. I had about 6 1/2 hours of sleep last night. I was so exhausted, my head hit the pillow and I was out!

This morning I'll go to the office and meet with my boss. We'll go over projects and programs, websites, employees, research, etc. It will be a brief meeting because I need to be to class at 9:10 a.m. halfway across campus. That means I need to leave about 20 minutes early so I can drive up, park in the pay lot and get to class on time. (Under normal circumstances I would just walk to class, but there isn't much that is normal about me right now.)

Which class? Well, this isn't one I'm looking as forward to taking. I'm sure it will involve some kind of math and I hate math. It's called Intro to Quantitative Communication Research. It just sounds fun, doesn't it? At least I know the professor well. The funny thing about working on campus is that I serve on committees with faculty. Well, yes. I serve on two committees with this professor, so it can be a little odd. Oh well.

After class, I'm heading back into the office until about 1:20. We'll have lab meeting at 1 p.m., so I'll have to cut out early from that. No biggie. I usually offer up the beginning announcements and my boss is here to actually direct the meeting.

I have to be at the Huntsman Cancer Institute, Clinic E, at 1:40 p.m. to have blood drawn. My appointment with Dr. Akerley is at 2 p.m. I'm nervous. Labs? I have to get blood drawn? As you may recall from previous posts, I hate needles. I really hate them. Also, this is really becoming much more of a definite thing now - therapy. I'll find out today what kind of therapy is going to happen, when, etc.

I'll go to the appointment alone. Last time we had to wait for nearly two hours before we were seen (I say we because Craig and Halle were with me). I'll be bringing textbooks to read, just in case I have to wait like that again.

I hope I can do this by myself. Of course, I'll have to, won't I? Then I'll come home tonight and talk to Craig about the plan, reasoning, side effects, schedule, etc.

We'll make dinner together as a family tonight. Craig barbecuing chicken and salmon (1/2 of the chicken for tonight and the other 1/2 for Friday night; the salmon for tomorrow night); Halle will help with the spinach pesto; I'll cook the pasta and be the director.

Then I'll go to bed and do a repeat, minus the doctor appointment, of Monday. Hmm. I guess.

Blink. Soon it will be all over with.

2010-01-11T03:00:00.002-07:00

I'm awake at 3 a.m. My day will officially begin in about 3 and a half hours. I'll go get yet another x-ray of my chest. My surgeon will look at my beautiful incision and say "looks good!" I'll drive my beautiful car to work and park in my spot that is always assuredly there waiting for me to arrive. I'll take that walk to the Aline Wilmot Skaggs Biology Building that should normally take about five minutes, but will hopefully in my case take ten minutes if I am lucky.

It's the first day of school for the semester and the lobby will most likely be crowded with biology and pre (insert the profession of any applied science here) students wandering around or sitting in the window seats. The confusion and loud talk will be a great disguise to my entry into the building and short walk to the elevator. Up to the top! The fifth floor of a four floor building is where my destination is. Down at the end of the hall, room 522.

Hopefully my only two plants aren't dead. Not that I could had promised them a whole lot more if I had been there over the last month to water them. My thumb is kind of mossy-brown, like a slow killer of all things green. I keep 'em alive just enough to make them think they've got a chance.

I don't want to think about seeing everyone in the lab just yet. It will happen and I'll tell my story a few times. It will be good to see everyone. I'll hang my coat on my coat hanger, put my lunch in the fridge just outside my office door. My chair. My lovely chair will be waiting for me. It will be good.

Then, class. Oh my gosh! Class. Yes. I have class today. Like I said, school starts today and that is no exception for me. This is it! I'm starting my last semester at the U. I always thought it would feel different. Be - well... I don't know. Maybe it isn't different. I mean. I'm still extremely excited about it! I'm really looking forward to the classes I'm taking. Today? Advanced American National Government with Dr. Benedict in Orson Spencer Hall. Lunchtime every MWF. I've been waiting to take this class, hoping it would eventually fit into my schedule. Yay!

Then back to the office, finally starting to do some real work. Organizing myself. Looking at my many projects and the programs we are trying to get off the ground. It will be very exciting! I really do enjoy my job. I really, really (can I use that word too much in one post?) love the people I work with and for. I could not ask for a better bunch of human beings to regularly associate myself with on a professional or personal level.

At 6 p.m. I will take that walk to the elevator, then to my car. I will sit in wonderment for a few minutes about what just happened. Is the day over with already? Did I really do it? All of that worry I had this morning at 3 a.m. - was it really worth it? No. No it wasn't. Now I get to go to dinner with my family as our regular tradition (and Lamb's downtown) expects. I'll talk to my family, who will eventually get there, and we'll go over our individual days with each other. Comfort. Tradition. In my world right now, this is what I need. Some kind of predictability. Simple expectations.

So. No. It was totally unnecessary for me to worry about how the day would turn out. If I would be able to do it. Clearly I just did! I did it! I conquered my fears and it all turned out just fine. In about 25 minutes, I was able to do it all - just as though I blinked and it was all over with. Now I'll go back to bed feeling accomplished, as though I've already done all this and it's no big deal at all. Good night...

Ready or Not, Here I Come!

2010-01-08T20:00:00.002-07:00

School starts on Monday. So does work. I have an appointment for a chest x-ray at 8:15 on Monday right before my visit with Dr. Bull, my surgeon. Tuesday I meet at 2:00 p.m. with Dr. Akerley to plan the following six weeks worth of therapy treatments.

I'm still taking Lortab at night (and sometimes the pain is enough during the day that I want to take it then too, but I want to drive more, so I guess (it's occurring to me now) that I could just take Ibuprofen or some non-narcotic pain reliever). I am still on a half liter of oxygen. Hopefully Dr. Bull will take me off of it on Monday before I head to work. I really don't want to drag along a big tank on wheels to my office and classes.

I'm entering my final semester at the University of Utah. I'll be taking three classes; ten credit hours. My work at this point gets busier and busier, leading to my big show in June. I will be getting my braces off on Tuesday February 16th. I will be applying for jobs in Manhattan, and possibly San Diego, to start in July or August. Which also means I may be trying to sell my house and move my family this year. On top of all of this, I will go through radiation therapy and continue to recover from Cushing's syndrome.

Do you think I'm taking on too much this year? Well, ready or not, here I come!

The Great Escape!

2010-01-07T06:48:00.002-07:00

I am going to drive my car today. I'm only going from my house to my orthodontist, which according to Google Maps is only 3.4 miles and should take me about 10 minutes. The appointment usually takes about 20 minutes and they are always on time. This means my whole outing will probably take me about 45 minutes. Not much time away, but definitely a great escape from the loneliness of being at home all day long!!

btw: I can drive now because I'm only taking one Lortab at night to help me sleep. I started this yesterday.

Warped glasses and some really good news.

2010-01-05T17:28:00.006-07:00

Below is an email from my endocrinologist. Here is a current picture of me. I'll post a new picture from time to time so we can see the changes occur.

"Even better news! Your urine free Cortisol was zero! It doesn't get better than that. If you remember it had been ranging in the 200-500 range (normal <45).>

I hope this part doesn't confuse you, but I also spoke with the laboratory director about your ACTH levels, and we are looking into trying to determine what we are measuring in the lab (it is ranging from 10-18; but given your Cortisol levels, it is not biologically active and may be an artifact). It may require more blood samples in the future.

You are doing GREAT."

P.S. You should know I absolutely hate pictures of myself right now. In my mind, this is not what I look like. Even when I look in the mirror, this is not what I look like. It is like looking at a distorted view of myself, as through warped glasses.

Proof.

2010-01-04T16:13:00.003-07:00

I did it. I called my doctor about my GI problems and concern about the Metformin for diabetes. He said I can stop taking that medication and to keep him informed of my GI situation. I am so excited!

This, to me, is huge. It's the end of poking myself with a needle. It's three fewer pills per day I have to take!

To me, this is proof that my Cushing's is going bye bye.

btw: I totally missed an appointment for a chest x-ray and visit with my surgeon this morning. I thought it was next Monday. Now I have to reschedule. Today would had been perfect since I had nothing else going on anyway. Bummer.

Totally unnecessary.

2010-01-04T06:44:00.002-07:00

I think I'm taking Metformin unnecessarily. A little more than a week ago my glucose tested at 89 - after I ate breakfast. The Metformin is for diabetes and I may not even have diabetes anymore. I had horrible cramping about a week before Christmas and was constipated. I took some "helping" medications and they "helped." Since then, though, I have had the exact opposite problem.

Yesterday morning I was thinking about it and what could be causing this problem. I thought about the Metformin because it deals with diabetes, a dietary issue. So, when I was at the grocery store yesterday, I stopped by and talked to the pharmacist. I asked what the side effects were for the medication Metformin. He said that GI problems were very common. I explained my situation (Cushing's induced diabetes - Cushing's going away - on the steroid Dexamethasone) and he suggested I call my doctor to see if it is possible for me to go off the Metformin as it may not be necessary anymore.

You betcha! I will be calling this morning. Three less pills per day, especially these larger type, is a great move forward for me. I would love to feel better and not have to go through GI problems while trying to recover from everything else!

P.S. Sorry this post is about poop. Just keepin' it real.

Update on "Getting Back"

2010-01-03T15:25:00.002-07:00

A few weeks ago I wrote a post about some "Things I can't wait to get back to doing" and I thought I would give you an update as to which I have been able to start doing again.

Still connected - breathing without a tube in my nose

Cuddling Up! Yay! - sleeping in my bed next to my husband

At least one meal a day - cooking

Not yet - pushing a grocery cart, not sitting in one

Not even close - exercising like I used to

"" - mini-triathlon

"" - riding a bike

School starts in a week, so we'll find out then - walking to class without feeling winded

"" - focusing on school

Not happening anytime soon, if anything, soon I'll be seeing MORE! :} - seeing fewer doctors

I am looking at apartments, just for the heck of it... - looking for jobs in Manhattan

Looks pretty good - working on my CV and cover letters

Just needs uploading! - working on my website

Maybe for Valentine's Day? - having dinner parties

Not really, but I didn't love that before, so I'm in no hurry. - cleaning my house

Nope. - helping at my daughter's school

Not yet. - going out with friends

"" - going on dates with my husband

"" - continuing to create new family traditions

Yep! Twice now! - Monday Night Dinners

Maybe next year. - polar bear club

No shopping yet. - shopping for stylish clothing

I have some ideas. - finding a style (should happen before the previous item)

Nope. - dancing

Nope. - visiting friends (some have had babies in the last year and I haven't seen them at all!)

After graduation? - traveling for vacation

This summer? - fishing

"" - camping (I've never been, but would like to go some time)

"" - hiking

Probably next winter. - snowshoeing!! (I have missed the last two winters and I love to snowshoe - fun and a great workout!)

Soon I think. - shopping with my tween daughter

YES! I love Super Mario Brothers. I've made it the 2nd world and am trying to conquer the darkness. I've actually had to take a break because I started yelling at the t.v. I've tried out Mario Kart too, but I suck pretty bad at it. - playing Wii with my daughter (I'm horrible mostly, but it's time spent with her)

Probably would be good to now show her how I react to playing Wii because I'm pretty sure the words emitting from my mouth are not very lady like... :) - showing my daughter what it means to be a woman

Maybe this summer? - gardening (flowers and plants - I've given up on vegetables/fruits because Craig loves it so much)

Not really. - home maintenance and decorating

Not yet. - bending over to lace up shoes

Getting there. - seeing my feet when standing

Will try when school starts in a week. - sitting in those little desks at school without feeling like I'm being cut in half

Still have braces until at least next month! - eating an apple without slicing it up first, same thing with a carrot

"" - flossing my teeth in 2 or 3 minutes, rather than 20 or 30 (threading between braces takes a long, long time!)

I've done it a few times, but I feel like my neck is still so fat. - wearing necklaces

I still have sutures and those little tabs covering my big incision, so not yet. - swimming

One baby step at a time. - running

Still missing. - finding my abs and butt

We've taken some pictures, but no professional portrait yet. - taking a family picture

Will help when there is not a foot of snow outside the back door. - evening walks after dinner

Not yet, but trying with friends who are very far away and need the support. - caring for friends, family and neighbors who may need me

Will start soon! I know there will be two of them! - planning graduation parties!

I've been IN my car while others drive it, but no driving yet. I miss my car. - driving my car

With the weather the way it's been lately, I don't think this would have happened even if I wasn't ill. - washing my car (inside and out)

Nope. - building more websites for people on the side

Nope. - go to the zoo

Nah. - walk through a museum

My husband. But he also says I'm "cuddly." Cuddly does not equal sexy in my book, but I'll take it for what it's worth! - being told I have a sexy body

The Good, The Bad, and The Ugly

2010-01-02T20:30:00.002-07:00

Okay. I get it. I'm supposed to feel crappy. It would just be nice if the whole feeling crappy thing could somehow coordinate with my plans for the day. For example: why can't I feel crappy when I'm just sitting around watching t.v.? Oh noooo. I have to feel crappy when it's time for me to finally get out of the house and go places. Then I just deal with it because I am so desperate to get out of the house. I need human interaction!

Other than my husband and daughter, I haven't seen another human being in 3D since Tuesday. Lately, my primary interaction with others has been via this blog, facebook, and texting, unless you count Bobby Flay teaching me how to cook bacon in the oven. I was needing a little human interaction.

Even my doctor contacted me via email this week. This is "the good" (the last few paragraphs were "the bad") news I received: my cortisol level last week was 0.7 (this is great news he said) and my glucose was 89. Both of these numbers excellent! He also asked how I was doing on the lower dose of dexamethasone - so I told him. (Here comes "the ugly".)

I told him about the pain in my joints and how my muscles felt like lead and rubber at the same time. I also told him about my worsening tummy problems. Other than those things, I told him, I'm just dealing with the normal post surgery issues: sparklers in the side, numbness, shortness of breath, etc, etc, etc... (I'm pretty sure "..." means etc, etc, etc - so consider the end of that last sentence a super etcetera!)

So, that's "the good", "the bad", and "the ugly". Overall, my spirits are up and I contribute that mostly to my getting out of the house both last night and tonight. Next week I'll be alone for the most part while Craig is at work and Halle is at school all day. I do get to go to the bank and the University Bookstore on Monday (deposit and textbooks). Yay!

Cushing's, Cancer, Graduation, and New York

2010-01-01T09:31:00.002-07:00

The two holidays that always seem to bring me down are New Year's and Valentine's Days. I guess it's been the expectations I've placed on them. When I was a teenager, I was the oldest, by far, of all my mom's friends kids, so I was the default babysitter. Every year my mom and her friends would get all dressed up in gaudy outfits with their big 80s hair and shiny long nails to party like it was 1989, give or take a few years. I was stuck with 5 or 6 kids all my brother's age in a house with a beta video player and boxes of pizza. It was some cruel form of birth control.

As it neared midnight, I became weepy. All the kids were usually conked out by this time or in some kind of comatose state. I'd be watching Dick Clark ring in the new year in my favorite city in the whole world - New York. Depressing.

I've never been to a New Year's Eve party that has met my expectations of those days. I've been to gatherings with family members and even been to a big downtown event (during which I was taken to the ER with kidney stones). I've even had my own party at our house where I cooked everyone dinner and we had a fine time. Still nothing to brag about...

For ringing in 2010, I had thought, a few years ago, that I would be celebrating just like I had always dreamed I could. This is the year I would graduate from college! After years of hard work and planning, it would all be paying off in 2010 - so I would have a lot to celebrate.

Instead, I sat in my throne with my own private O2 bar watching "Up" with my husband and daughter. There was nothing wrong with it. But it wasn't much different from any other weekend night either. It made me feel disappointed and sad about my situation. After all, I really had something to look forward to!

There have been a lot of other things that have happened to me since my birth in 1974 that I haven't even gotten to here yet. Things that have made me stop looking to the future before. There was actually a point in my life where planning and thinking about what I was going to do or what I was capable of were actually pushed out of my mind as to avoid the disappointment that would surely follow failure. It took me a long time to get over that. To be able to plan and see a future.

Now I sit here in the first hours of 2010 wondering if I have the strength to look ahead, to plan on anything. There seem to be more questions than answers and I really am afraid to plan. I know what I want, but I am not sure of the path to get it. I'm on my way with ridding my body of Cushing's syndrome. Soon, I'll start the process to alleviate cancer, too. The path to graduation in May is all set, but I'm unsure of my ability to conquer 10 credit hours, work full time, take care of my family, and go through radiation therapy/wean off steroids at the same time. The ultimate completion of 2010 will find me in Manhattan with my family working in a job I love and completely healthy and fit.

Here's to hope - because that's all I have left.

Cheers to the human spirit

2009-12-31T09:18:00.002-07:00

Some things I've learned in 2009.

- Knowing is half the battle.

- Confronting and defeating is the other half.

- Nothing can replace love.

- The human spirit lives.

Thank you to everyone out there for your love and support. I don't think I would be where I am without you.

- Heather Rasmussen

Humpty Dumpty and the Great Train Wreck

2009-12-29T03:30:00.003-07:00

How am I going to do this? How am I going to go back to work and school? I wonder how I'm going to drive, for heaven's sake. I get so tired - really it's like to most fatigue I've ever felt at one time. My arms and legs feel like lead weight, but rubbery. I sometimes feel like it's just getting worse, rather than better. I wonder when I'll start seeing evidence of change - when I'll start really feeling better, instead of worse.

If I am going to start school and return to work in a few weeks, something has to change. I have to start feeling better somehow. I can't possibly be productive in my current state! I'm like a train wreck with all of my pieces scattered all over the track. The whole purpose of a train is to move on the track, transporting things from place to place. If it's broken, it can't be productive - like me. I feel like I couldn't fulfill my purpose right now because I'm broken. I'm scattered all over my own track.

I need to be put back together again. So far, not even the king's horses or men have been able to do this. I hope modern medicine has a chance.

Reading Up

2009-12-26T22:15:00.002-07:00

I have tried to learn as much as possible about my illnesses, all of the tests and procedures, and surgeries. I have a great desire to understand what is happening to me, what to expect, and what the possibilities are. My motto "Be Your Own Super Hero - Out To Save Your Own Life" means that we should all seek to understand and be in charge of what happens to us. No. We may not be able to control our ailments themselves, but we can control how we address and respond to them. Choosing health facilities and physicians has a great deal to do with experience, knowledge, ability, and availability.

More than anything, knowing and understanding what to expect can help us prepare for what is coming. That can be comforting in a way, even if it's scary at the same time.

I decided to look up some information on the side effects of steroid therapy for post-surgery induced Cushing's Syndrome. There are 36 side effects I can look forward to - although I know I may not get them all. But when you look at the many symptoms of Cushing's Syndrome and think there is no way one person can get all of them - make way for me, I tend to break most of the rules and expectations. Better be prepared just in case I guess.

I'm not going to lie - this is like some kind of hell.

2009-12-25T20:35:00.002-07:00

My doctor didn't lie when he explained what it will be feeling like as I taper off the steroids. He said I would feel crappy. I won't lie to you - he was right.

If I hadn't known how I was supposed to feel during this time, I might had requested to be taken to the doctor. It's like going downhill or backwards in recovery. Every joint hurts. My stomach basically empties soon after every meal. I am tired a lot and feel like I just want to sleep.

I'm not going to lie - this sucks the big one. I was going to try to wean myself from the Lortab, but I'm kind of wondering now if that's the best idea. I wonder how much more painful my joints will be without it?

So, the truth of the matter is that this is the way it is - no matter how much it sucks - so I have to just deal with it. Either way, it still sucks.

Feeling it.

2009-12-24T23:37:00.002-07:00

My back aches. My appetite has decreased. I'm losing weight. My skin is clearer. I waxed my facial hair, so we'll see if there are any changes there in the next few weeks. My blood pressure is nice and low (normal) and my blood sugar is much better. I feel cruddy some times and other times feel like I have a lot of energy.

I love to cook and did a lot of that today. The kitchen is really my space in the house. Luckily, I can mess it up all I want and my husband will clean it up. He's one of the beneficiaries of my labors in there, so is perfectly happy to do it. I made spritz cookies with my daugther, apple cheddar muffins with my mom, and I made dinner for all of us to celebrate Christmas Eve. After all of my time in the kitchen, I was so pooped and my back hurt so much, I kind of thought I might have overdone it.

My mom leaves on Saturday to go back to California. Knowing what I know about how I will eventually feel (crappier) and based on what I feel like now, I am worried that I won't be able to do what she's been doing for me. Somehow I have to balance everything so I can manage to do the regular things at home - mostly kitchen stuff.

I'm also worried about staying occupied with things so I don't dwell on feeling crappy or on my situation. My mother being here has been a great distraction from all of that. Halle will still be home from school all next week, but she will most likely want to play with friends. Obviously. I can't drive yet and most of my friends have to work all day, so loneliness is looking like a big possibility. While I love watching Food Network, Giada, Guy, and Tyler can only hang with me in 30 minute increments and they don't really interact or anything... :)

The week after that, my last week of leave, Halle will be in school. I'm hoping to be off of the pain medication by then so I can drive her to school. Also, it will help me tremendously if I can get out - even to go down to Craig's work each day to have lunch with him or something. I can't just sit around at home. By then, I will hopefully be used to feeling crappy and won't sit around feeling that way. I would much rather be out and about feeling crappy if I can.

Tomorrow is Christmas. Actually, it is in 10 minutes here. I know the greatest gift I and my family have received this year is the knowledge that my Cushing's is gone and that I am on my way to recovery now from that and cancer. Not only do I feel the pain and changes happening to my body, I also feel the thoughts and prayers of my friends and family. So many people have been pulling for me, thinking of me, and keeping me in their prayers. I have never felt so much compassion and love in all of my life. It is such a good feeling and one that I know has truly helped me through all of this. Nothing can match the power of good feelings to uplift a soul.

Cushing's Free!

2009-12-23T15:12:00.002-07:00

I went to my endocrinologist this morning and he was very happy. He said I had made his Christmas holiday. My cortisol level is 1.3 on dexamethasone (steroid), which means that my cortisol level is totally normal!

We are going to start tapering the dexamethasone from 2 mg per day to 1.5 mg per day. My doctor told me this is when I will start seeing the changes occur. He also said this is when I will start feel crappy. How? Well, apparently I'll feel about 30 years older with aches and creaks in all of my joints and be really tired toward the evening, needing to go to bed earlier than normal. Of course, this won't last forever, so it will be worth it!

I asked about the radiation therapy. My doctor said the oncologist and the radiology oncologists are still debating on whether or not I need the combined radiation/chemo therapies or just radiation therapy. Either way, they don't want to do anything until I'm six weeks post surgery. That means I'm looking at no earlier than the end of January for therapy to start. Radiation therapy will wear me out and make me look sunburned - so that will mean I am apt to be even more tired between the combination of radiation AND tapering off the steroids.

I am nervous about all of this but I know it will be for the best and everything will turn out alright in the end. Right now I am Cushing's free (naturally ocurring, anyway - the steroids induce Cushing's symptoms). I am thrilled. Now I just need to get rid of the cancer and I'll be all set!

No pro sports for me...

2009-12-22T23:01:00.002-07:00

My hormones are changing rapidly and are all over the place - like a roller coaster. My endocrinologist prescribed steroids for me and I take them twice a day. I can tell when I am needing the next dose. I'm starting to feel the changes happen - I have lost about 17 pounds within the last 11 days. My energy level goes up and down throughout the day. My chest hurts sometimes - but I am trying to wean myself of the Lortab pain medication. I am sometimes very emotional, and sometimes ultra relaxed. The emotional side is different than it was before the surgery - not so intense, but at the same time, still unpredictable.

I'm going to the endocrinologist tomorrow - I should find out about radiation therapy and the suggestions about how I will address the changes my body is undertaking right now. Cushing's syndrome has so many symptoms, I am trying to follow all of them and see if I can tell which are changing and which are not yet.

The steroids are working well right now I think with keeping me stable hormonally. Of course, this completely makes me ineligible to participate in pro sports. I'll have to stick with just being a fan...

Getting my groove on

2009-12-21T06:17:00.002-07:00

I am getting my groove on. I have conquered 2009 with all of its surprises, roller coasters, and frustrations. I have been stuck with a needle more times than I can even begin to count. I have paid more in co-pays than in my whole life combined. I have spent more time away from home than ever before. I have done more research on the Internet. I have seen more doctors. I have had procedures and surgeries I had never even heard of before. I have also met more people in this one year than in any other year before.

What have I learned? I've learned that nothing can stop by - slow me down? Maybe. But I have done it so far - I'm still going. I don't know what it is that makes me like this - strong. I feel very strong. I feel like nothing can get me - that I am somehow invincible to many things.

I have done well in school during all of this and still am on schedule to graduate this May. I am ready to start my last semester. I am ready to go back to work. I am ready to take on radiation therapy.

Of that list I have below, I have been able to accomplish a few of those things already.

Just getting my groove on.

Getting back

2009-12-19T02:33:00.002-07:00

Things I can't wait to get back to doing:

- breathing without a tube in my nose

- sleeping in my bed next to my husband

- cooking

- pushing a grocery cart, not sitting in one

- exercising like I used to

- mini-triathlon

- riding a bike

- walking to class without feeling winded

- focusing on school

- seeing fewer doctors

- looking for jobs in Manhattan

- working on my CV and cover letters

- working on my website

- having dinner parties

- cleaning my house

- helping at my daughter's school

- going out with friends

- going on dates with my husband

- continuing to create new family traditions

- Monday Night Dinners

- polar bear club

- shopping for stylish clothing

- finding a style (should happen before the previous item)

- dancing

- visiting friends (some have had babies in the last year and I haven't seen them at all!)

- traveling for vacation

- fishing

- camping (I've never been, but would like to go some time)

- hiking

- snowshoeing!! (I have missed the last two winters and I love to snowshoe - fun and a great workout!)

- shopping with my tween daughter

- playing Wii with my daughter (I'm horrible mostly, but it's time spent with her)

- showing my daughter what it means to be a woman

- gardening (flowers and plants - I've given up on vegetables/fruits because Craig loves it so much)

- home maintenance and decorating

- bending over to lace up shoes

- seeing my feet when standing

- sitting in those little desks at school without feeling like I'm being cut in half

- eating an apple without slicing it up first, same thing with a carrot

- flossing my teeth in 2 or 3 minutes, rather than 20 or 30 (threading between braces takes a long, long time!)

- wearing necklaces

- swimming

- running

- finding my abs and butt

- taking a family picture

- evening walks after dinner

- caring for friends, family and neighbors who may need me

- planning graduation parties!

- driving my car

- washing my car (inside and out)

- building more websites for people on the side

- go to the zoo

- walk through a museum

- being told I have a sexy body

Just breathe

2009-12-19T02:16:00.002-07:00

I'm on oxygen. I need it to help me recover. When I'm at home, I have a long tube that connects me to an oxygen machine. The machine is in our living room at the center of the house so I can walk around the house with my tube. (No chance of playing hide-and-seek while wearing this thing...) When I leave the house, I have a big portable tank and short tube. Not terribly convenient, but it works.

Sometimes the long tube at home gets stood on and I don't notice for a while. The oxygen level is really low, so it isn't very noticeable if I'm not getting it for a few minutes. It's more that if I go to walk and someone is standing on it (even myself) I nearly trip and fall over. It's all part of the deal, isn't it? Kind of funny in some ways.

You know, I try to be positive about a lot of this. How else can I be? I could sulk and cry all the time, but how would it help? I think if I didn't have such awesome support from friends and family it would be much harder. Much lonelier. Even people I don't know comment on this blog or join my group on facebook and talk to me there. Also, it helps tremendously that I have a life outside of my illnesses - goals, responsibilities, and dreams.

I have a great job and a great boss. I work where I go to school, so that helps. I have a scholarship to go to school and want to make my tribe proud of me. I will finish my bachelor of science degree this spring in two major areas of study. I want to move to Manhattan with my family so I can work in my field, support my family and be a sugar-momma to my husband. I am raising a beautiful 11 year old daughter. I have other loves in my life - things I really enjoy doing, like cooking and sports. I love to cook. I love creating new recipes. I love eating. I love sports, too! I love to watch football (both NFL and college), basketball (NBA), ML baseball, soccer, gymnastics, swimming, and a lot of olympic sports.

I can't wait to be able to get into playing sports - or at least working out! I know it will happen. I think I need a new post. I have so much to say.

The hospital.

2009-12-17T04:01:00.002-07:00

They wheeled me into the OR, a large bright room with a lot of marked equipment everywhere. In the middle, a small bed on wheels - my destination. The doctors pushed my bed up to the little bed and helped me transition over, trying to avoid unintentional separation of beds at the same time. I didn't lay down to start off with. I needed the epidural first.

I heard every word spoken in the room. I saw bins - some closed up with labels on them (mostly of surgeon's names), and some with little scissor-like things with small sponges hooked on the ends. I saw a lot of bright lamps directed at the centerpiece of the room - my new, temporary bed. I was going to be the show! There were two large flat screen televisions on the wall - so I guess there were cameras somewhere - but those were most likely on the ends of some small tubes and wires that would eventually be inserted into me. I had some welcoming exchanges with people (nurses?) behind masks.

Wait a second! I am remembering way too much of this - recognizing too much!!! This isn't what I wanted - I don't want to remember any of this at all! I became a little panicky.

My legs hung off one side of the new bed. I was asked to lean over this pillow that had been placed strategically on a wheeled metal cart as to position my back for the placement of the epidural. A nurse stood on the other side of the cart to prevent it from moving (and keep me still I think).

The nurse placed her hand on my right shoulder. It was comforting to me. I told her so when she began to remove it - she replaced her hand there and it stay for the remainder of the epidural placement.

The doctor was tapping on my back a lot and it was hurting. I told him that with the Cushing's, my back is extremely sensitive to touch - that I sometimes couldn't even handle a simple hug. He changed tactic and pursued something less painful.

The epidural was placed and we moved on to the intubation.

The doctors had given me a horrible tasting topical for my throat and mouth before we entered the OR. It numbed me up pretty well - and I am sure it helped.

My eyes were closed for the intubation, but I could remember hearing the doctor describe to another doctor what he was doing as he was doing it. Because they use an alternative method to intubating me, and we were at a teaching hospital, the method was described probably to a resident. Before I knew it, the intubation was successful and I don't remember anything after that until I woke up a few hours later in the Surgical Intensive Care Unit.

The surgery was over. Yay! It wasn't even really the surgery that I was afraid of to begin with (see my post from December 11th). Why worry about the stuff you won't have any memory of?

Thinking about how things in life work - as I do regularly - I can relate my experience with the intubation and epidural placement directly to my life (and to a Rolling Stone's song).

My greatest fear going into this surgery was the intubation and epidural placement. I have had bad experiences with both before and didn't want a repeat. I didn't want to remember having to go through those again. I asked the anesthesiologists to knock me out as much as possible so I wouldn't remember. They did try one new tactic (the topical for my throat), but other than that, I think I was more awake and aware this time than last. Not what I had been asking and hoping for at all. (If it were up to me, I would had been knocked out the night before at home with some kind of medication, after which an ambulance would had picked me up, taken me to the hospital where I would have surgery, recover completely, and be returned to my own comfy bed at home as though nothing had happened.)

So, how does this relate to life? Well, in the words of the Rolling Stones "You can't always get what you want. But if you try sometime you may just find you get what you need." I didn't get what I wanted, but I got what I needed. I asked to not remember, but I remember very clearly. I got what I needed because I learned an important lesson - one that I couldn't had learned any other way I don't think. The power of communication.

By being so awake and aware, I was able to communicate comfort and pain; I was able to understand what was happening to me as it was being explained to another. My fears have been alleviated. Instead of avoiding these experiences and tossing them into the "forever feared" bin of my life, I have had the opportunity to embrace them and redefine their place in my life - no longer feared, but understood.

I am not sure what my future holds (are any of us?). What I do know is that all of the experiences in my life are accumulating like a great snow storm from which I will pluck the flakes and put them together again to somehow help others. Each snowflake in my stormy life has purpose and meaning - I am sure there is a higher purpose for each one in my future.

I'll take two please.

2009-12-16T21:40:00.002-07:00

In the last year, I have gone through most tests and procedures at least twice each. I've had two brain MRIs, two attempted IPSSs, two CTs, two radioneuclide tests, and two thoracotamy's.

I have had a successful surgery and have returned home. The surgeon's believe they got the tumor (and all of my other doctors agree). The ACTH and Cortisol levels have dropped dramatically and are now in the "normal" range - although this is still not what the endocrinologist was looking for - he wanted the numbers to be zero. I will start radiation therapy soon I guess.

The good thing is that I should start seeing some changes from the Cushing's. I will give a proper update tomorrow on the surgery, stay at the hospital, plan, etc.

Here I go again...

2009-12-11T03:24:00.002-07:00

Today's the day. I've got a few short hours before they start surgery. I'm not so afraid of the surgery itself. I'll be asleep and when I wake up, it will be over. Recovery I can handle - even with all of the tubes and stuff. The two things I am most afraid of right now are the insertion of the epidural and the intubation.

I have had bad experiences with both of these - traumatic I would even say. I wasn't "asleep" enough, so could feel and remember the attempts by anesthesiologists to do these, which were unsuccessful until they gave me more sleepy medicine. Unfortunately, I have to be somewhat awake to have these done as I am (surprise, surprise) not an easy patient to put these things into. I have to be intubated in the non-traditional method and the epidural was very difficult to place, even for the veteran anesthesiologist.

Once I get past the part where I fall asleep, being at the hospital (while it can be a terribly lonely place, despite all of the hourly visits from nurses and blood suckers), is really the least of my worries right now.

The surgery itself does not seem highly invasive from the perspective of my organs. Mostly it seems like the surgeon will just be roaming around in my chest looking for and removing lymph nodes. Even though he has to open my back up again and spread my ribs, my lungs won't need to exit my body like last time, so that is good.

Above all, I want to be better. I want to be free from cancer and Cushing's. I know there is no other way to get better without this surgery. This is that "next step" on my list. Over the last year, I've constantly been asking what that next step is - tests, procedures, surgeries... After this? Treatment to ensure this won't happen again. Radiation.

Last night (the Final Supper, so to speak) my daughter handed me a large manila envelope at dinner. We were at a little Italian restaurant downtown with my mother and husband. As I opened the envelop, my husband gently laid a hanky on the table in front of me. I knew exactly what was inside when I saw various colors of construction paper folded in half. There had to be at least 50 cards and notes in there. They were to myself and my daughter from her 5th grade class. I read through each and every one, then passed them around the table. We laughed and cried at the thoughtfulness and caring words the students wrote.

I am going to have my daughter bring these cards and notes to the hospital tomorrow and tape them up in my room. They are an inspiration to me. Some of the notes should be sent to Jay Leno my mother said, because kids just speak their mind. Most said they hoped I "survived" and that "surgery is scary" but to not "freak out" because "they're pros." Other kids wrote supporting notes to my daughter to let her know they would be there for her, some "understanding what she is going through." Each student wrote two notes, one to her and one to me (Mrs. Rasmussen).

After this is all over, I believe a visit to her class to show them I am okay is necessary. I want them to know that their thoughts and prayers (as many stated in their notes were taking place) worked and that they should never give up on those things. Another inspiration to "survive."

Seal it up

2009-12-05T18:33:00.003-07:00

I'm having surgery again on Friday. The surgeon is going to open me up again along the same incision as before. This time he's going to remove all of the lymph nodes in the area. I'm going to stay in the hospital for a few days, like 4 to 6.

I still haven't heard what the consensus is on my aftercare: Cushing's and Cancer. I don't know what I will be expecting to feel like after surgery. My endocrinologist said that I should get sick after the surgery and need some kind of steroid or something, but I never found out what "sick" really meant. How "sick" will I be? I don't know. My oncologist hasn't told me what therapy I will need after surgery to make sure I don't get this again - straight radiation? Radiation with chemotherapy? SBRT? Again, I don't know.

I'm afraid my body is revolting. I have a head cold that is making its way to my chest. I have diarrhea nearly everyday. I'm tired, but not too tired to do my regular stuff.

In a week from now, I will be in the hospital being poked and prodded by nurses and doctors every few hours. I hate being at the hospital. It is a lonely place, despite all the visits from nurses. My mother will be here, so that will help ease the loneliness. My husband and daughter will come when they can and that will help too.

I hate eating alone - my family eats dinner together every single night. Even if I have class into the evening, they wait for me so we can eat together. On the weekend, it is a rare occasion for us to not eat every single meal together. During the weekdays, my husband has to be at work before we are even awake, so we don't eat breakfast with him, which is sad. I leave my office a lot to go and eat lunch somewhere else on or off campus so I'm not alone. In the hospital, I'm nearly always alone eating.

I am happy that when I come home from the hospital, my house will be a cheery place. We are finishing the decorating today for the holiday. Our tree is up and watered, but still needs its lights and decorations. We have other decorations to put up too, including the exterior lights on the bushes. Of course, we still need to get rid of the pumpkins outside!! Really, it will be nice to come home to a festive place where my family is there and so is the holiday cheer.

Hello, I have lung cancer and Cushing's syndrome. Want to hire me?

2009-12-02T03:38:00.002-07:00

Okay. A friend of mine sent me a job posting from a government organization that has the possibility for advancement. It is a position that could use my two fields of study - Political Science and Mass Comm/PR. The pay could be very similar to what I currently make and it seems like a fulfilling position/organization (homeless management information systems). I could see this as something I would definitely be qualified to do, and something that could eventually lead me into positions that I would enjoy and gain a great amount of satisfaction from.

I sent in my resume with a cover letter on Monday. Yesterday, I got a call to come in for an interview on Thursday. Really? I actually didn't expect to hear anything on this at all. Now what do I do?

Here are my problems with all of this:

1- I have lung cancer and Cushing's syndrome for which I will be having surgery in a little more than a week. After this surgery, I will be out on medical leave for a month, then at some point have to begin radiation therapy.

2- I go to school. I work at my school. I get tuition benefits for working at my school. While I do have a scholarship, it only pays for about half of my tuition.

3- I have a crazy work schedule when combined with my class schedule for next semester.

I conveyed the first problem to my friend. She suggested I still go in for the interview for the experience. I agree. I should. Am I nervous? Yes.

I haven't even told my husband yet. In the midst of all of my life's troubles, it is good to know that someone may be interested in me as an employee in a position I would choose. It is just too bad I'm not in a life position to pursue it more rigorously.

Pressed below normal

2009-11-30T06:52:00.002-07:00

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.

My motto.

2009-11-26T11:40:00.000-07:00

1 to 2 percent of 1 to 2 percent = rare

2009-11-25T05:37:00.002-07:00

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.

Locked Up

2009-11-20T06:02:00.002-07:00

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.

Control

2009-11-13T21:29:00.002-07:00

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.

The Culprit

2009-11-12T21:13:00.002-07:00

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!!

Tests suck. They just do.

2009-11-06T07:40:00.002-07:00

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.

A Boxing Match

2009-11-04T09:30:00.002-07:00

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.

The Future

2009-11-01T21:57:00.002-07:00

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?

Spiderman thoughts.

2009-10-30T12:58:00.002-06:00

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.

2009-10-28T20:34:00.002-06:00

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...

2009-10-27T08:43:00.002-06:00

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.

2009-10-16T21:22:00.002-06:00

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

2009-10-14T21:42:00.002-06:00

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?

2009-10-11T05:27:00.002-06:00

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

2009-10-11T05:15:00.003-06:00

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

2009-10-07T23:49:00.004-06:00

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...

2009-10-04T08:10:00.002-06:00

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...

Post surgery update

2009-09-30T20:27:00.002-06:00

On Friday July 31st I had surgery to remove an entire lobe from my right lung. The cancerous tumor was removed successfully and I am feeling much better. It has been just over eight weeks since then and I have started to see some changes in my Cushing's symptoms.

The night of the surgery, the nurses in the SICU (Surgical Intensive Care Unit) thought I was only reacting the massive amounts of drugs they were pumping me full of. I was smiling when I woke up. I was so happy. When they asked how I was feeling, I just kept saying how happy I was. I remember crying. Happy tears.

Finally, I was on the other side of this. Finally.

No more diagnosing. The thing in me that was causing me so much pain and suffering was finally out of me. The thing that didn't belong in me. The tumor.

I do have diabetes now, to add to the other symptoms. No telling how long I have actually had it though. I found out while I was in the hospital. The best thing I have noticed since surgery is my ability to walk normally. My joints and muscles aren't painful anymore. When I returned from California in May, I was using a walker, then a cane just to get around. Now I walk at a normal pace and can, mostly, keep up with people.

I will keep you updated as to the other changes that happen!

Skipping ahead.

2009-07-27T23:35:00.002-06:00

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.

Character.

Ha!!

Yuck.

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.

Oceans

2009-07-17T23:39:00.000-06:00

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.

Collapsing all over the place...

2009-07-06T23:04:00.000-06:00

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.

Testing a Rollercoaster

2009-07-03T00:32:00.001-06:00

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.

Losing it.

2009-06-28T18:39:00.000-06:00

Last Christmas, I was with my family at my parents home in California. It was in the shower that I first really noticed I was losing my hair. More than the normal hair loss we all experience as humans. As a full time student, full time employee, wife and mother, I thought I was just stressed out. I'd heard that hair loss was a possible symptom of stress. Plus, it was Christmastime, an unnecessarily stressful time of year.

I told my husband on the drive home that I needed to schedule an appointment to visit my doctor back home to see what I could do to help stop the hair loss. When I got back home, post-Christmas cleaning up and organizing, preparing for the next semester to start, and the regular day-to-day stuff distracted me from my hair issue.

I noticed I was breaking out on my neck, chin, and around the ears. I'd never broken out like that before. I noticed other things about my body that were changing, but that I never correlated to each other. My husband noticed a hump on my upper back. We both thought I needed to not slouch so much at my computer at work. I'd also spent several months previously dieting and working out three times a week vigorously in an attempt to get healthy and fit. Last October I got braces and this is important to know.

Well, with all of the working out and dieting, my face and neck never slimmed down. In fact, with all of the crunches I was doing (50 center and 50 each side, three times a week), I never could see the results of my labors. My tummy was still chunky looking.

In January of this year, I went home from work feeling like my emotions were pushed to the extreme. I just sat at my desk crying and didn't know why.

On January 19, 2009, I finally went to my doctor. I brought her a bag of my hair that I collected that morning between the shower, the sink, the floor and my brush. I had blood drawn and a few days later, she called me with the results.

Cushing's Syndrome or Disease - it was unclear which it was at this point. I needed to do more tests.

Passing on Character

2009-06-28T18:23:00.000-06:00

In life, we experience things that we are told will give us character or make us stronger. Some of the experiences are chosen, others are inadvertent, and others are completely out of our control.

Sometimes we feel alone with these experiences, as though nobody else in the world could possibly understand. This makes sense in a lot of ways, but mostly because it is our experiences that determine our reality. Even if a group of people all experience the same event, it is their own perspective of that event that is their reality. This is why we can ask a group of people who all witnessed the same car accident to describe in their own words what happened and no two descriptions will be the same word for word.

The great thing in life is that there really are people out there who have experienced something similar to us. There are people who can come together to support each other with stories of their own life experiences and be a benefit of support to another human.

I hope to be that benefit for others who read this blog.