Thursday, December 31, 2009

Cheers to the human spirit

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

Tuesday, December 29, 2009

Humpty Dumpty and the Great Train Wreck

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.

Saturday, December 26, 2009

Reading Up

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.

Friday, December 25, 2009

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

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.

Thursday, December 24, 2009

Feeling it.

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.

Wednesday, December 23, 2009

Cushing's Free!

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!

Tuesday, December 22, 2009

No pro sports for me...

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...

Monday, December 21, 2009

Getting my groove on

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.

Saturday, December 19, 2009

Getting back

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

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.

Thursday, December 17, 2009

The hospital.

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.

Wednesday, December 16, 2009

I'll take two please.

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.

Friday, December 11, 2009

Here I go again...

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."

Saturday, December 5, 2009

Seal it up

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.

Wednesday, December 2, 2009

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

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.

Monday, November 30, 2009

Pressed below normal

I cry every day.

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

I'm angry.

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

I'm forgetting.

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

Pressed below normal.

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

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

Thursday, November 26, 2009

My motto.

Wednesday, November 25, 2009

1 to 2 percent of 1 to 2 percent = rare

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

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

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

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

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

Friday, November 20, 2009

Locked Up

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

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

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

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

I don't know.

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

Friday, November 13, 2009


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

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

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

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

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

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

Thursday, November 12, 2009

The Culprit

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

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

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

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

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

Friday, November 6, 2009

Tests suck. They just do.

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

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

Wednesday, November 4, 2009

A Boxing Match

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

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

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

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

Sunday, November 1, 2009

The Future

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

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

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

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

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

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

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

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

Friday, October 30, 2009

Spiderman thoughts.

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.

Wednesday, October 28, 2009


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.

Tuesday, October 27, 2009

A Wrinkle in Time...

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.

Friday, October 16, 2009

Yep. I got stuck on the conference table today.

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!

Wednesday, October 14, 2009


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.

Sunday, October 11, 2009

2 Problems - 5 Doctors - What do I do?

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

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!

Wednesday, October 7, 2009


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!

Sunday, October 4, 2009

Fear and loathing in Salt Lake City...

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...

Wednesday, September 30, 2009

Post surgery update

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!

Monday, July 27, 2009

Skipping ahead.

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

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

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

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

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

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

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

I am afraid of being cut open.

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




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

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

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

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

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

Friday, July 17, 2009


Oceans of emotions. So cliche.

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

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

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

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

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

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

I lost it.

Another draw back.

More testing.

More time.

More questions.





Monday, July 6, 2009

Collapsing all over the place...

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

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

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

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

I really hate needles.

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

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

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

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

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

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

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

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

Friday, July 3, 2009

Testing a Rollercoaster

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

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

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

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

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

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

Sunday, June 28, 2009

Losing it.

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

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.