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

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.

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.

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.

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.

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!

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...

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.

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.

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.

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.

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."

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.

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.