Surgery and Staging

After 2 days without solid foods, the last 8 hours with nothing at all, I checked into the hospital for surgery scheduled at 9:00 am on April 9th, 2007. I happened to see a friend, Kirsten, who was checking in at the same time for surgery on her spine. We did our bloodwork together and waited to be called to the pre-op area together. After about 15 minutes of waiting, I was called to pre-op.

The pre-op area was a room in the basement without windows that had a large nurse's area in the middle with several people working and a bunch of smaller rooms lining it with curtains as doors. Each room had a hospital bed, a chair, and some supplies.

I followed a nurse to one of the curtained rooms that had a piece of paper with my last name handwritten on it. She told me to take my clothes off and put them in a plastic bag provided for me which she called "a nice piece of luggage". I did that and hopped into the hospital bed. She came back quickly and put a heated blanket on me. I noticed there was a picture of a field with some flowers about 4" by 6" on the ceiling directly above me. Someone must have put it there to meditate on. She left and another nurse came in. The new nurse asked me a lot of questions about my health and sat down to put my IV in. She tried twice in the bend of my arm with no success...and a lot of pain. Then she tried on the top of my hand after putting some anesthetic in it to numb it up. It took several tries to get that one in too. My whole arm was purple!

After about 15 minutes, my mom and my fiance came in to sit with me until surgery would start. In the meantime, I walked to the next room over where Kirsten was getting set up too. We hugged and asked eachother if the other was scared and we both said "yes". I went back to my room and met with the anesthesiologist. He told me what he expected to happen when they put me to sleep. Eventually it was time to go to surgery. I said good-bye to my family and a nurse wheeled me off to the OR on the same floor just down the hall. I remember starting to feel really happy on the way to the room, getting inside the OR and things just going blank almost immediately.

When I woke up I was in a recovery room with several other people yelling and writhing, and some nurses running around. I was in intense pain. I could barely speak. Through my post-surgery fog I could see that Kirsten was in the bed to my left. She looked good and was fully awake. I heard screaming from the man to my right. He was yelling about his leg and how much pain he was in and to make it stop. It scared me a little. I felt like I was in an army medical tent after a bombing. The clock was directly in front of me, and I think it said 1:30 pm. A nurse came to my bedside when she noticed I was awake and asked me if I was in pain and I sort of sobbed "yes". Dan came in to see me and I don't remember what we talked about, just that I hurt. The nurse gave me something to make me feel better and I faded back into a deep sleep.

I woke up again a few hours later and they started wheeling me to my hospital room. I saw my mom and Dan sitting outside my room. The transport people who wheeled me to my room told them to stay outside while they moved me to my hospital bed. They told me how to move over. I was in terrible, terrible pain so each movement was breathtaking. I needed to do it slowly, but apparently one of the transport nurses needed me to move faster so she grabbed my legs and just shoved me over, saying I needed to do just do it. I CAN'T TELL YOU HOW BADLY THAT HURT. I hesitate to say this, but at that moment, I began to wonder if dying might be better than that pain. I groaned an awful groan and began to panic. The transport nurses left and my mom and Dan came in. I was crying because of the pain, but it hurt to cry so I was trying not to.

A new nurse came in and showed me how to work my morphine pump (yay!). I quickly learned that you could push it every 6 or 7 minutes so I just watched the clock and pressed it as soon as I knew I could for the next few hours. That first night was a total haze but I do remember the deep, dark depression I sunk into at that point. I also had a panic attack or two.

I was hooked up to so many machines that they moved me to a larger room the next day so all the equipment could fit. I stayed in the hospital for 5 days. During my stay they also performed a fine needle aspiration on my thyroid to check for cancerous cells. My doctor and her assistant came to see me a few days later too. They came with a huge entourage of nurses. They told me that they didn't find any cancerous cells in any of the 40 biopsies they took from my abdomen and that everything looked very healthy. However, I was still going to have to undergo chemotherapy because of the size of the tumor that was removed and the rapidity with which it grew. Even though they didn't find any cancerous cells in my abdomen, there was a chance the tumor shed before it was removed and some cancerous cells traveled to other places in my body.

Velcro Head

My head has Velcro.

It attaches to pillows,

and sometimes hats too.

Thank You

...to...

Suzanne for the wonderful homemade dinners and book for Tristan.
Shan for mowing my lawn continuously and even using the weed-wacker!
Kristin for the food I can't remember because of all the drugs I was taking...(they call that "chemo brain"!)
Jennifer W. for the casserole and just hanging out on the front porch with some beers.
Jennifer N. for the kick-@ss calzones and quiche, and the sweet hats to keep my noggin warm.
Lori for bringing food, hanging out, and just being a really great friend during this time.
Stephanie and Tasha for bringing Rudy's Sopapillas...my favorite!
Jackie and Julie for bringing snacks to eat during my down week.
Justin and Meg for the loads of groceries for packing lunches and just serving dinners on the fly.
Jon for bringing us pizza from our favorite restaurant.
Leilan for being kind to my mom and bringing the yummy cake.
Makaela for being an outstanding person and giving the best way she knows how--project management!
Jesse and Mike for sheetrocking and electric work on the sunroom.
Cindy for all the phone calls and attention I need, and the beautiful plant.
Billie and Rich for just thinking about me constantly....oh, and the iPod. :)
Jerry for helping me get to my bloodwork once a week and helping me with my car.
Molly for putting family first and babysitting when I know she has other things to do.
Cassie for being a good friend and sister.
Mom for of course being a mom and taking care of me during chemo week, and for forcing me to ask about drugs that will help me feel better.
Dad for actually asking how I'm feeling instead of making this about him (seriously, that's a big one).
Grandma M. for sending me countless cards (at least 2 per week) and calling all the time.
Aunt Trish for sending the teddy bear, tea, and candy and worrying about me.
Aunt Lin for asking about me and sending me links to websites that will help.
Uncle Greg for the books for Tristan that will help him understand what's going on, and being an insider on how I feel.
Gail for helping me decide on the port and answering any questions about chemo I've had.
Tabitha for being relatable and knowing what's going on...probably the only person who knows EXACTLY how I feel.
Meika for just talking to me when I needed someone to talk to and missed her so, so much.
LeAnne for being a wealth of knowledge, making sure I feel ok, and asking her mom for samples.
Lily and Jason for the phone calls, flowers, and constant good thoughts.
June for babysitting me during my first chemo week and watching Maja when my other mom couldn't be there.
Teresa for loaning us the bed for visitors, the flowers, and watching the kids.
Margie for the loads of cards she sends!
Annette and Steve for praying for our family.
Megan for using her mad ninja-chef skills to produce the best mac n' cheese, soup, and grilled vegetable lazagne a girl could ask for.
Miss Jeanetta and Miss Andrea for taking such good care of our little boy, Tristan, and thinking about us often.
Debi B. for the candle, the sippy cup lids, and for being thoughtful.
Chris S. for the pain relief information and his movie collection.
Angie for the fantastic veggie burgers and pasta salad.
Chris B. for helping me take Maja to the doctor by keeping Tristan occupied.
Vicky for sending the post-natal tea and aromatherapy, and for offering to help in any way when I know she's busy with her own pregnancy (girl, you're so sweet...sorry I forgot to mention you earlier. Damn!)
Bridget for being a good listener and being honest, letting me vent, and understanding when I don't want to talk.
Sean and Kathleen for the beautiful tulips.
Kevin and Dena for the beautiful roses.
Muller and Co. for the beautiful lilies at the hospital, and for being so understanding and helpful--what a great bunch of people and a great organization to work for!!
Dan for being as close to me as he can and being the best man a girl can have.
Tristan for understanding what cancer is and how it hurts, for giving me his blanket, and loving me and worrying about me.
Maja for always smiling and being happy even when I'm not, and for saving my life.

Breastfeeding and the CT Scan

So, I was scheduled a CT scan 2 weeks after Maja's birth to "make sure there wasn't anything obvious" before I went in for the hysterectomy. I had to drink like a liter of the contrast solution stuff that tastes terrible. Meanwhile, I had been breastfeeding and was quite successful at it. I bought all the new tubing and equipment for the double Medela Pump-in-style Advance and was even pumping a little already. If you're not a mother, haven't breastfed, or it didn't work out for you, it might not be as important to you, but I was very set on doing it for at least the first several months. Not only do I feel it's best for the baby's health, but there is quite a bonding that occurs and it just feels natural to me. In short: I LOVED IT.


The Breastfeeding Drama

When I got to the imaging office where I was to undergo the CT scan of my chest and abdomen, Maja was sleeping and I had some stored breastmilk for my sister to feed her if she woke up while I was in the scan. I suddenly realized that I needed to check with the lactation consultants (who had been quite the lifesavers and so helpful) at the hospital where I delivered to see if I could still breastfeed after drinking the solution. I can't believe I forgot about that!!! They said I could breastfeed after the solution, but the dye that would be inserted prior to the scan could not be consumed by the baby. I would have to "pump and dump" for 24 hours after the scan. That meant I would have to feed Maja formula for the next day with no transition period since I only had a few ounces stored. I was so very sad. I had already fed her from my breast for the last time. It's hard to explain the bond a mother has with her breastfeeding baby, but I guess I could say I sort felt a sense of loss when I had to stop. Even though I could have resumed after 24 hours, I decided to stop completely since I would have surgery the next week and various other medical procedures would probably pop up. It would be best to try and dry up before surgery so I was at least a little less uncomfortable.


The Scan

I went into the room where the scan would be performed and was scared sh*tless. Why? I don't know. I've never had a CT scan before and it was a huge tubular vault I was going to have to willingly climb into and remain still and not breathe while some whirly thingy spun around me making a noise that sounded like the aliens from that Tom Cruise movie. Freaked me out. Anyway, it didn't hurt and I was scared for nothing but it would have been nice to have been prepared.


The Results

A couple of days later I got a call from a nurse practitioner at the oncologist's office saying they needed to talk to me about the scan. When I got on the phone with the nurse, she was chewing on her lunch and very nonchalantly says they found some nodules on my thyroid that would need to be biopsied between bites. Holy crap! What??! I immediately hang up and freak out. Has my cancer spread? Where the hell is my thyroid? What does my thyroid do? Do I have thyroid cancer too? If it's in my thyroid and my ovaries, where else did it stop along the way?? More importantly, WHAT DID I DO TO MAKE MY BODY HATE ME?

This was the first time I actually cried about the cancer. This was the first time I felt the gravity of the situation. I had cried a little before when telling people about my situation, but mostly because I didn't know how to tell them and I felt more sorry for them having to worry about me than anything else. That day I went into a downward spiral of worry, wonder, and guilt. I felt guilty that I didn't treat my body better. I felt guilty that I took advantage of my physique. I felt most guilty that there was a possibility that my son and daughter might have to grow up without a mom.

Sick of Being Bald

Well, my hair started falling out on Mother's Day, 12 days after my first chemo treatment. I was expecting another week before I had to worry about it. I pretended it wasn't happening but a couple of days later there was no pretending. I went to Chop Tops to get my hair cut off short immediately. Very cute haircut, but if I had wanted short hair I would have had short hair, you know?

During my second chemo treatment week the bald spots and constantly picking hair out of my mouth, off my shoulders, and off my baby started getting to me so I had my mom shave it all off. It actually felt really, really good. I don't have to spend time doing my hair and I even got some camo pants to match my new look. It's sort of freeing, really.

I'm about to undergo my third chemo treatment and I'm looking in the mirror wishing I had some hair. I have a wig, various hats, scarves, and could even wear one of Maja's stick-on bows if I felt like it. I feel like I've exhausted all looks that could go with a bald head today. I'm such a girlie-girl and I love to wear frilly dresses, but I end up looking like a teenage boy in a dress. Now, I can appreciate a man in a dress...really, I can. I'm just sick of being GI Jane. Boo!

Oh, and razor burn on your head??? That sucks too.

Meeting the Oncologist

I went to my OB's office to get my staples out from the c-section a week after the incision was made. She referred me to who would be my gynecologic oncologist for an appointment the next week. Things were moving so fast!

Fifteen days from the date my daughter was born I met the oncologist who I'd soon have a close relationship with. I actually still had some butterfly tape over my incision that she took off for me. She did the exam and frequently expressed how sorry she was for me. I didn't understand what I was getting into. Everyone felt so bad for me and I was just rolling with the punches. She let me ask questions and gave me all the information she had about the disease.

She told me that the chance of survival from this disease would be greatly increased if I had a total hysterectomy. In the surgery business, this is called something like a total abdominal hysterectomy and bilateral salpingo-oopherectomy, or a TAHBSO. That means the removal of my uterus, both fallopian tubes, both ovaries (I only had one left), and they would also take a lymph node or two from my pelvis and several other biopsies in my abdomen. They would also remove some fatty tissue on my bowels that cancer tends to gravitate toward. If there was visible cancer in my bowels, they would section it off and reattach it.

They gave me a "bowel prep kit" to drink the day before surgery and told me I couldn't have any solids for two days prior. I'm a vegetarian so I knew this part would be exceptionally hard, and it was. The surgery was set for April 9th, two weeks later. I wouldn't see my oncologist again until after surgery.

The Story of My Diagnosis

My name is Hillary and I have Clear Cell Ovarian Cancer. Here is my story.

I've been living in my little bungalow with my boyfriend, Dan, for a little over 4 years. We have a 3 year old son, Tristan. We had been thinking of getting married but it hasn't been a priority in our lives since we have so many other things going on. I guess you could call us hippies.

We decided we wanted another little bundle of joy to add to our family in the summer of 2006 and, lo and behold, I found out I was pregnant by the end of the summer and the due date was St. Patty's Day of 2007. I had a pretty uneventful first trimester. During week 20 I had an ultrasound. The technician noticed a cyst on my right ovary that measured about 5cm in diameter, but said it was very common to have "pregnancy cysts" and that they would watch it but it would probably go away on its own. I wasn't really worried.

As I started to get bigger and rounder, I started getting more exhausted and my back started to hurt, just like any normal pregnancy. I didn't have any other complaints. I'd been through this before with my first pregnancy and I actually felt pretty good comparatively. During week 34 I had another ultrasound and no one said anything about the cyst. I had actually forgotten about it by that time. They did find that our soon-to-be little girl was transverse breech, meaning that she was not in the head down position, but she was kind of stuck sideways. No wonder I was so uncomfortable! I'm a pretty skinny girl normally, so the back pain now made sense. One thing I did NOT want was a c-section so we decided to try and turn her in a procedure called a version scheduled for the next week.

I was not looking forward to a medical intervention such as a version so I had been trying various methods at home to get her to turn on her own. I used a flashlight to shine on my belly where I wanted her head to go and a bag of frozen peas where I wanted her feet to be. I did this every night until our appointment and I believe I felt her move in the proper direction. When we got to our appointment at the hospital, they had to perform another ultrasound to see where she was and if she had turned on her own. The little bugger had! She was facing south. That was very exciting.

The technician kept asking us questions about if this was a normal pregnancy and if we had anything we were wondering about. She left the room to get the doctor who was originally going to perform the version and when he returned things started getting odd. He looked at the pictures taken from the ultrasound and said that yes, she had moved, but that there was a very large cyst on my right ovary. We had forgotten all about that cyst. It now measured 11cm in diameter (the baby's head measured close to the same at that point) and was covering the birth canal. He said we would have to have a c-section because he didn't think the baby would be able to pass through, and they would want to look at the cyst anyway.

I was devastated. I felt so out of control. For some reason I was most upset about not being able to deliver her in the event that I had to do it on my own, like if I got locked in a trunk, or got lost in the woods or something. I eventually got over it as best I could and started focusing on getting through the surgery and healing. By week 37 I was put on bed rest due to extreme fatigue and back pain because of the cyst and we scheduled the c-section for week 39. I was feeling healthy and ready to have my body back.

The c-section was so scary. I had never had surgery before, so I didn't know what to expect. They wouldn't let Dan in the OR while they were inserting the spinal anesthetic so I was really having a tough time with trying to relax. Once they got me on the table and Dan by my side, I felt better. My OB started the procedure at 10:30 and she was born at 10:37 am. During the time we were oh-ing and ah-ing over our newborn, Maja, and laughing about how we thought she'd be so big when she only weighed 6 pounds 15 ounces, my doctor was inspecting my ovary. She sent a frozen section down to pathology to be tested and was waiting on the results. It was taking a very long time for them to get back to her. I ended up being open on the table for somewhere around 45 minutes I could tell they were getting anxious to close me up. They finally did and I went to recovery. That was a Monday.

I was in some pain, but I recovered pretty well that week. I remember telling my doctor I felt like I could run a marathon. I was ready to go home on Friday. Friday morning at 7 am, my doctor came in and woke us all up. She said she had to talk to us. She told us that she had to remove the entire ovary which suspected she would, and that the results had come back from pathology finally. She said the reason it had taken so long was because the pathologist couldn't believe what he was seeing and had to do more tests to make sure. I had Clear Cell Ovarian Cancer which was a very rare form of Ovarian Cancer and it was very aggressive. The mean age of onset for this type was 57 years old and I was only 31. I could not believe what I was hearing. I didn't cry. I had a gorgeous newborn to add to my great family and I was so happy, how could I worry about myself now? I guess I would have to put off that marathon.