Wednesday, August 18, 2010

My funeral

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?

Saturday, July 17, 2010


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?"


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.

Tuesday, June 15, 2010


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.

Monday, May 10, 2010

What customer service!

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...

Thursday, May 6, 2010

Busy being sick.

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.

Tuesday, April 6, 2010

What will life be like?

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?

Monday, March 29, 2010

Meeting the man

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.

Wednesday, March 24, 2010

Turning 36

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.

Tuesday, March 16, 2010

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

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.

Thursday, March 11, 2010

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

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.

Tuesday, March 9, 2010

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

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.

Monday, March 8, 2010

My body doesn't like me anymore.

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.

Wednesday, March 3, 2010

Progress is always good

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!

Friday, February 26, 2010

Just say no.

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

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

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

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

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

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

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

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

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

Tuesday, February 16, 2010

Building up.

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

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

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

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

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

My parents finally divorced when I finished 8th grade.

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, February 9, 2010

Long time, no news

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

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

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

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

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

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

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

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

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

Monday, February 1, 2010

Ow. I must be getting better.

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

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

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

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

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

Wednesday, January 27, 2010

Going Hormonal

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.

Sunday, January 24, 2010

What can I do about it?

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.

Friday, January 22, 2010

Life is like a smorgasbord.

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.

Thursday, January 21, 2010

Alert!! Nationwide Shortage of Radioactive Agent!!

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.

Wednesday, January 20, 2010

This is hard.

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.

Monday, January 18, 2010

Silky smooth - like a baby's butt.

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.

Friday, January 15, 2010

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

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...

Wednesday, January 13, 2010

Fear of being consumed.

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.


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.

Tuesday, January 12, 2010

Bzzzzzz. The pros and cons.

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?

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.

Monday, January 11, 2010

Blink. Soon it will be all over with.

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...

Friday, January 8, 2010

Ready or Not, Here I Come!

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!

Thursday, January 7, 2010

The Great Escape!

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.

Tuesday, January 5, 2010

Warped glasses and some really good news.

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.

Monday, January 4, 2010


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.

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.

Sunday, January 3, 2010

Update on "Getting Back"

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

Saturday, January 2, 2010

The Good, The Bad, and The Ugly

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!

Friday, January 1, 2010

Cushing's, Cancer, Graduation, and New York

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.