I stumbled upon a great blog I love, My Swollen Stomach, when I was first diagnosed with ovarian cancer two months ago. Her story is slowly unfolding into something similar, yet very different, from my own. The writer was 22 years old when her journey began.
Please take a moment to read her blog. Start at the beginning. All I can say is, if someone had told me I had to wait six months for surgery to remove my “cyst,” like this young woman was first told, and sent home in the kind of excruciating pain I was experiencing, cancer probably would have killed me.
Sadly, this is what happens all too often to women who are not lucky enough to experience any symptoms or pain that may alert them earlier to the fact that they could have ovarian cancer.
There is no diagnostic screening for ovarian cancer.
Most women are diagnosed with ovarian cancer when it is already in the advanced stages. The overall five year survival rate for ovarian cancer is only 43.7%.
This year alone, 22,240 American women will be diagnosed with ovarian cancer. 14,030 women will die from this silent, deadly killer.
I now have two more cancer related procedures under my belt and a new piece of plasticware in my body. Last week I had the IVC filter (aka the clot catcher) removed and a second chemo port inserted in my upper chest. Neither procedure was necessarily painful, but both were certainly uncomfortable and strange.
It was a very long day. My son and his girlfriend brought me to the hospital at 10:00am. We waited afterwards in the waiting room until 12:15pm, waited in the pre-op room until 3:00pm, and I was brought back to the room at 6:00pm. After recovering from the sedation for about an hour and eating a sandwich and chips, I got home around 7:30pm. Apparently Mondays are their busiest day and they had had no cancellations, like they usually did.
The nicest thing was seeing one of the two guys and the beautiful Kenyan woman who were there when the IVC filter was first inserted the night before surgery. J, the missing participant, called in sick that day. Having the same people there really helped make the procedure less scary. Amazingly, the nurse who was in charge of me during the procedures also knew one of the women in my running group. He mentioned Kim who was “always running crazy distances.” I asked if her last name was _____, and he couldn’t believe I knew her. It’s definitely a small world.
By the time I got to the room I was very tired of being on my back. I always sleep on my side and have never been able to get comfortable on my back. When they wheeled me into the room and closed the door to surgery, the door popped back open on its own. This happened over and over. The doctors scrambled and tried to barricade it with surgical equipment from the room, but the door wouldn’t hold. My nurse, A, would very calmly move the equipment the impatient doctors tried to jimmy-rig and calmly tell everyone that maintenance would be there soon and they would have to move it anyway. Then another doctor would get antsy to get started and move something else in front of the door, and A would very calmly move it once again. Over and over.
A maintenance guy finally came and unscrewed the hinge so they could open and close the door manually. Apparently there had been an override button that had been removed very recently that would have solved the problem from the beginning.
All of this took a full hour, and I was on my back on the hard, plastic bed the entire time.
Finally the doctors could get started with the first procedure: removal of the IVC filter. W, the Kenyan princess, swabbed my neck and chest with antiseptic and the “conscious sedation” was begun. I was told to turn my head to the left and not move, and a large paper sheet was put over my face and head. They made sure to tie it up in front of my face because I’m a little claustrophobic.
I had to wonder who was in charge of the music in the room. It was definitely some sort of classic mix, and there was a lot of Gordon Lightfoot and John Denver. Being a former JD groupie in junior high, I kind of liked it. Since I was already under sedation, I remember babbling to the doctors and nurses about how much my tough, inner city fifth grade students loved John Denver songs, especially “Take Me Home, Country Roads.” S said he didn’t think he’d ever even heard that song. (Really? Am I really that old?) I think the doctors thought I was a little weird, but I’m sure they’ve heard worse from patients under sedation.
After my embarrassing display of John Denver nerdiness, the doctors were on a mission to get started and GO HOME. I understood. It had been a long day and I was the last procedure of the day.
I just wanted off that uncomfortable table.
First I was given shots of Lidocaine, which hurts and burns a lot, to deaden the area on my neck. The procedure to remove the filter lasted about an hour and they even showed me what it looked like, dripping with blood, after they took it out. Pretty cool stuff. I asked if I could take it home but they wouldn’t let me. Liability issues.
After that they put in the port. Both procedures involve making a hole in the side of my neck and accessing a vein. For the IVC filter they sent down a wire into a vein in the middle of my chest, where the filter was previously placed, and they grabbed the little hook on the top and just pulled it out. It took a few tries (remember, they are leaning right over my right ear the entire time and I heard everything they said, every “ugh,” “aw,” and sigh).
Inserting a port seemed a little more involved and was a little more uncomfortable. After inserting a tube into a vein going up my upper right chest, that then goes down to the top of my heart, they made a small pocket below that in my chest and slid in the plastic port. Now all my chemo meds can be accessed through this port rather than having to have an IV each time.
I was glad when both procedures were done and I could go home. I didn’t realize how much I had been dreading the procedures.
A few hours later, at home, I looked at myself in the mirror and was aghast to see blue lines all over my neck, chest, and right shoulder. It looked like my veins had exploded.
I looked like a Smurf.
I thought maybe it was the contrast they had used for the x-rays. Then I got a little worried. I went online to do some super-sleuthing, but all I could find was something about calling the doctor if your lips and fingernails turned blue. Nails and lips were good. Skin, not so much.
I debated calling the on-call doctor. I felt okay. Nothing hurt. I decided to sit on the couch and do nothing.
Suddenly I had a thought. I went to the bathroom and wet some toilet paper. It was on my skin. The blue stuff was left over from when W had washed me down with antiseptic.
It all came off. I felt like the world’s biggest idiot.
I blame it on the sedation.
I’m not feeling well enough to write much since I started chemo this week, but here’s a twenty-three second clip just prior to my first chemo treatment. More to come!
Going into chemo is like nesting before a baby is born. I keep picking up things around the house, knowing I won’t be able to do as much once I start the treatments. I keep trying to fit in cleaning the bathroom between naps, but I’m not having much luck with that this weekend.
Chemo begins this coming Thursday. To say I am nervous and worried would be an understatement. I woke up this morning with an image of myself sailing in a small boat into a wall of sky-high fog.
Before chemo, though, as in tomorrow, I will have another port inserted in my upper chest and have the IVC filter (the clot catcher) removed.
Oh boy, I can hardly wait. The word dread comes to mind.
I’ve been doing a lot of yoga.
Somehow having this second port put in, and getting an official date for the chemo, makes it all seem suddenly very, very real. It’s not like I was in denial before, but it was easy to push it to the back of my mind as long as I was recovering from surgery.
I already have one port under my left breast, and it doesn’t hurt, but it’s odd having a hard, plastic thing under your skin. When I do yoga it doesn’t necessarily stretch with the rest of my body and is uncomfortable. At least it’s hidden away and isn’t visible, but you can feel the tube running all the way down into my abdominal cavity. (I know all you squeamish types are shivering and saying “eeeewwww” at this point.)
The second port will be on my upper right chest and will be very visible, especially since it’s summer forever here in Texas and I’ll be wearing shirts that don’t cover me up as much. The radiologist told me this port’s tube will go directly to my heart. You can imagine where my brain is going with that piece of information.
It’s my choice to have the port inserted so I can’t complain too much. It’s either that or an IV every single time I have chemo, so this is much easier–and much less painful, which is always a good thing in my book.
Having the IVC filter removed also shouldn’t be that big of a deal. I will be sedated for both procedures and shouldn’t feel anything. It’s just knowing that someone will be sending a wire down a vein in my neck and pulling out a little octopus-shaped thingy with pointy arms that creeps me out.
On Friday I had to go for a consult with the radiologist. Before I saw him they did an ultrasound of the arteries in both legs to see if there were any more clots (there were none, and they have never found any there, which further gives credence to Dr K’s thought that they came directly from the tumor itself). When I saw the radiologist, Dr R, he came into the room and immediately said, “I remember you. There were about 15 people in your hospital room when I saw you. It was like a party!”
I see my family and friends left a lasting impression from my time in the hospital!
Because of my relatively young age and overall health, Dr K wants to treat the cancer aggressively, the same way she would treat a stage 3. If it’s too much for me, we will scale down to the once every three weeks schedule. I would rather be aggressive and get rid of it, if possible.
Because my chemo will be in three week cycles, the infusion days are Thursday and Friday of week one, then Thursday of week two. Friday of week two I have to go in for some kind of injection to help boost my red and white blood cells, and the third week I’m chemo-free. Because of the Thursday/Friday schedule, it looks like two out of three weekends will pretty much be shot until Halloween.
And the really funny thing is, my very last day of chemo is on Halloween. I’m thinking a costume might be in order that day. Wonder Woman, perhaps? My wonderful friend, Pat, already gave me a WW figurine and WW mug, so now all I need are the magic bracelets and the star tiara.
Some hair would be nice, too.
I’ve been strong. I’ve been positive. I’ve been a “rock star” patient (according to the nurses in the hospital). But today, finally, reality is starting to set in.
I have cancer.
It isn’t something that is just going to go away. I may battle this for the rest of my life. I will heal from surgery and jump right into chemo. I will essentially poison all the cells in my body to get rid of the cancer cells and hopefully trick them into submission.
But one day they may decide to come back. Then, the battle begins all over.
I’m not trying to be pessimistic. Today I take a hard look at what I’m up against. It’s all part of the show.
Photo courtesy of: Ted Van Pelt [CC-BY-2.0 (http://creativecommons.org/licenses/by/2.0)%5D, via Wikimedia Commons
Last night I ordered some scarves and hats from the American Cancer Society so I will be prepared when my hair falls out. For the past two weeks, since the doctor told me my hair will most definitely fall out, I’ve thought it’s no big deal that my hair will fall out. Today I know that’s BS. It’s going to be a HUGE deal for me. My hair is below my shoulders. What is it going to be like when my hair starts coming out in clumps? When I wake up and see clumps of it on my pillowcase, or see clumps of it slide down the drain in the shower? What will I look like without eyebrows? Without eyelashes?
And something I thought I’d never do: I’ve even found myself getting angry and thinking WHY ME? I did everything right: I had children, I breastfed them both for a year each, and I took birth control pills when I wasn’t pregnant–all protective factors against ovarian cancer. I’ve run ridiculous distances for the past seven years, I don’t drink, I’ve never smoked, never done drugs, and I eat organic as often as I can afford to. All that wasn’t enough to protect me from cancer.
Why am I having to go through this?
I don’t always believe that things happen for a reason. Sometimes bad things just happen. No rhyme or reason, they just do. It sucks. I understand that. I accept that in the Russian roulette of life and disease, I got cancer.
But it doesn’t mean I have to like it.
The outpouring of support since I started sharing my story has been incredible. Overwhelming, to a point. It’s hard to hear over and over how “strong” I am. I don’t feel strong, I feel realistic. I am a fighter by nature. I won’t roll over and play dead. I’ve always said: I’m going to live forever. Cancer certainly isn’t going to change that.
But today, after weeks of smiling and staying positive, I’m allowing myself to feel this exhaustion, this numbness as I accept that I have cancer and that the battle has just begun. I think that I’ve been very positive up to this point, but this is my reality today. And as I’ve stated over and over, I’m not one to sugarcoat anything. There will be days like this. I knew there would be, and that’s why it’s not a big deal. It will pass.
So having a bad cancer day can be like trashing your own hotel room. You put on a good show, do everything that’s expected of you, then you go back to your digs and get a little crazy.
Despite this one bad day, in the end I will win, and I will win big. And I’m going to bring as many women and their families over the finish line with me as I possibly can. I don’t know how yet, but I’m going to make it happen.
My legs want to move, my brain says it’s time to do something, but my incision and internal organs say, heck no, all we want to do is lay around on the couch. Grrrr.
I definitely overdid things on Thursday after getting good news from the doctor. The staples came out, we found out the cancer had not spread to the lymph nodes or internal organs, and I thought I was all that. Okay, I still had cancer, and a rare form at that, but death wasn’t knocking on my front door. Heck, he wasn’t even in the neighborhood!
So what did I do? I had lunch with my sister, my son, and his girlfriend. I went to Half Price Books, walked around the store, and bought knitting books (full disclosure: I did have to text everyone and tell them to come find me under the Arts and Crafts sign, sitting in a cushy, padded, wingback chair, probably fast asleep by the time they got there). I met my running group for drinks. I had a late dinner with some of them. I had brunch the next morning with my closest friends.
I had a blast. Seeing friends and family has kept me sane throughout this entire experience. But yesterday I was exhausted. My incision hurt and it was uncomfortable to walk. Today is the same. Setback. I was doing so well. A rock star. Now I’m just restless and impatient.
I haven’t had a really bad day since this all began. I haven’t had a meltdown about having cancer. I haven’t gotten angry and shook my fists at the gods screaming, “WHY ME???” I’ve been surprisingly accepting and realistic about the whole thing.
Cancer can happen to anyone.
I’m reading the Gilda Radner book It’s Always Something about her battle with ovarian cancer. It’s a great book, but shocking that it took almost a year before she was diagnosed. Things are better now, almost 30 years later, especially as far as treatment, but I can’t help but be saddened that there is still NO screening for ovarian cancer.
Dr K told me that being diagnosed as stage 2 is very rare. She only has ONE other patient who is a stage 2. The majority of her patients are either stage 1, when the cancer was caught early either accidentally or because of torsion (twisting) and pain, or the more advanced stages 3 and 4. To me, that’s shocking.
The torsion, rupturing, and pain I experienced were the best things that could have happened to me. They literally saved my life. On the flip side, I have a rare form of ovarian cancer, and I fear that the doctors won’t know exactly which drugs to treat it with during chemo to send it into remission. I will get more information the next time I go to the doctor, but it scares me.
A good run would do me a world of good, but that’s out of the question. In the meantime, I’ll keep pacing the tiger’s cage, back and forth, over and over, until I can one day break free and return to my “normal” life once again.
You know how you buy a new car and you love it? And then someone hits your car and it’s in the shop and you get it back and it’s just never the same again?
That’s how I feel lately about my body.
I was happy with my body. It’s been a good body for 53 years. It gave me two children, produced food for them, and got me through eight marathons and one ultra marathon. I even had other surgeries, an appendectomy on my 27th birthday and a hysterectomy five and a half years ago.
This latest surgery and a cancer diagnosis and impending chemo have been the big car accident that makes it seem like I’ll never quite be the same again. My stomach is lumpy, for God’s sake.
I was shocked to read two facts about ovarian cancer on the NOCC (National Ovarian Cancer Coalition) website:
Cancerous epithelial tumors are carcinomas – meaning they begin in the tissue that lines the ovaries. These are the most common and most dangerous of all types of ovarian cancers. Unfortunately, almost 70 percent of women with the common epithelial ovarian are not diagnosed until the disease is advanced in stage.
Epithelial ovarian carcinomas (EOCs) account for 85 to 90 percent of all cancers of the ovaries.
Also, epithelial ovarian cancer rarely happens to women under the age of 60. This is why Dr K keeps saying “because you’re so young” when she talks about treating me aggressively, even though I’m not really “so young.”
So. Based on the stats I mentioned above, we got VERY good news at my first post-op visit with the doctor. All the biopsies were clear; no cancer cells were detected in any of my internal organs. Even better, 40 lymph nodes were removed (not 25, like we thought) and every single one was clear of any cancer cells.
In other words, the cancer cells have not spread anywhere else in my body.
The bad news is that I have a rare form of ovarian cancer, called mucinous epithelial ovarian cancer. The tumor was a mucinous adenocarcinoma. Something like less than 5% of ovarian cancers are mucinous, which means it may be a little trickier to treat if only because they have so little data to go on.
Dr K presented my case to the Tumor Board, and there was talk of being able to take part in a clinical trial (I’m not eligible because of the blood clots), but it has now been officially determined that my cancer is only Stage 1C.
1C, y’all. THIS. IS. HUGE.
This means that I only have a 20-25% chance of the cancer returning after remission, as opposed to the worst case scenario that Dr K spoke of in the hospital of an 85-90% chance of it coming back.
I feel very, very fortunate.
I will still do chemo in a few weeks, and she wants to treat it aggressively because of my age and my fitness level, so I have a rough six months ahead of me. But chances are I’m going to live a long, healthy life.
Which means I have many more years ahead of me to help other women who have to go through ovarian cancer. And that is very, very good news indeed.
Thursday, 6/13/13: FIRST MORNING IN MY OWN BED
I feel split open. I have no walls left, no boundaries, no anger. I have razor sharp focus. I feel pure love at my core. It all sounds so new agey and I could care less. There’s no room for anything but honesty, love, happiness, and acceptance. Amazing how coming face to face with your own mortality can change you overnight.
After the surgery, when we stayed up until 3:30am talking, I told everyone that this cancer has been a gift. I really meant it. It’s been a gift in that it’s cleared away a lot of cobwebs, that I can suddenly see what’s important in life and what’s not. It’s very much like that scene in Contact (one of my favorite movies because it’s from a book written by Carl Sagan) where Ellie travels through a series of wormholes on her way to the aliens who have made contact with planet Earth. In between the various wormholes she has the chance to look around at the solar system, at the incredible beauty and magnitude of the universe, and all she can say is “I had no idea. I had no idea.” That’s how I feel.
The first few days after surgery, while I was on morphine, I had a strange experience. Repeatedly, throughout the day and night, I would “see” something out of the corner of my eye, always in the same area, at the foot of my bed in front of the door. It was a tall, thin man wearing a hat like men used to wear during the 30’s and 40’s. I never “saw” this man, I just always knew he was there. It wasn’t scary or creepy, it was more protective. I never had the thought that this man was there to take me to the other side. He was just there, watching over me. I didn’t tell anyone about it until later.
Blame it on the morphine.
On the flip side, I never felt the presence of Bob or Arshad while waiting in the pre-op room before surgery (Bob and Arshad are two running friends who died in the past five years, Bob from lung cancer, Arshad from a car accident.) For some reason I always imagine Bob and Arshad coming to get me when the time is right, kind of like they’re bringing me into the heavenly running group they’ve started up there. I somehow “knew” I was going to be okay because Bob and Arshad were nowhere around.
[Do I sound really flakey and new agey? I do sound really flakey and new agey. I have no idea if ghosts and spirits exist or if there’s any sort of an afterlife. It’s all a fantasy in my head, but somehow it made sense to feel that way at the time.]
Michael and I had a great talk at midnight last night. We’ve never been able to be this open, to talk about our issues with patience and understanding. I guess we were both too defensive. He cried and told me this cancer is very serious, much worse than I think it is. Even if it’s only stage 2 it will be a battle. It may kill me in the end. He loves me so much. He is prepared to go on this journey with me. I am so incredibly lucky.
I’m procrastinating writing about the surgery and post-op. It is somewhat hazy and dark. Not sure I’m ready to go back to that place, but it has to be done. It’s time to rest, recover, and build my strength for the fight ahead. I’m also procrastinating reading about chemo and what to expect. I need to use all my strength to staying focused on today. Tomorrow will come, and I will be ready, but one step at a time. One day at a time.
Friday, 6/14/13: ONE WEEK POST-OP: HARDER THAN I THOUGHT
Took a shower this afternoon and took a true look at my body. First thing I notice is that I am skin and bones. My calf and arm muscles are flabby. My boobs are almost nonexistent. My incision scar is almost 9 inches high, from pubic bones to middle of ribs. My abdomen, waist, and upper hips are bloated and swollen.
But my skin is clear and acne-free and my hair has stopped falling out.
Stayed up until 3:30am watching The Notebook with Dom. Woke up feeling much better than yesterday. No stomach issues, and I ate well all day with no gas, no nausea.
The blood thinner injections are starting to become tedious. There is something very odd about sticking a needle in your body and injecting something. I have to admit, the blood clots kind of ick me out. The thought of something traveling through my body to my brain, lungs, or heart and possibly killing me — with no warning — is disconcerting. Maybe worse than knowing I have cancer.
Did a full loop of walking around the neighborhood. At 9:45pm it was still 91 degrees and no breeze whatsoever. My speed has certainly improved, though it is still uncomfortable to walk.
Looked at some photos Michael took when I was in the hospital. I am slowly starting to think about what happens next. I have a booklet I picked up at the hospital about chemotherapy and will begin reading through it. I also want to listen to the recordings Michael made of Dr K talking to the family right after surgery. Michael says she lays it all out and I need to know exactly what I’m up against.
One step at a time.
Very excited because tomorrow morning Bill is picking me up at 6:15am to meet WRRC for our very first Saturday Run My Hood in Sunnyvale at Kevin’s friend’s house. I won’t run, of course, but I am hoping to walk a little. Mostly, I just want to see everyone again and get back into some semblance of a “regular” life again.
Saturday, 6/15/13: A SHOT OF ADRENALINE
Spent the morning visiting with my running group in Sunnyvale. Bill picked me, Michael, and Susan B up at our house and we drove in together. Bill realized he might have left his phone on top of his car and had to leave immediately afterwards. He located his phone via GPS signal later in the day, in the median at Highway 80 and Big Town exit, smashed and pretty much destroyed — which meant a new iPhone 5.
It was so wonderful to see so many of my friends again, even if I couldn’t run with them. I managed to take about a three quarters of a mile walk with Michael and Katti (and her baby bump) and spent the rest of the time sitting and visiting with everyone. I was actually glad that I didn’t have to run because it was humid and a hilly route. Strangely, Stacy B was there with her busted up ankle and told me she also has blood clots and has to give herself injections of a blood thinner. She even has to have them twice a day. No fun.
I am thanking the Timing Gods for making this all happen during the hottest part of the year. I have probably lost a lot of muscle not only from not being able to run, but also from not eating for three weeks and my muscles being used for energy when the fat reserves ran out. Not sure how scientific that is, but my calf muscles are super flabby!
Appetite was great today, so Operation Fatten Up Angela is in full swing. After spending the entire morning in Sunnyvale, came home and took a long nap. It was the most activity I’ve done in weeks. Ran some errands with Michael (shoe shopping and buying dog food) in the afternoon, then finally got around to watching Alien with the family in honor of the alien monster baby I gave birth to a week ago. Just call me Angela Ripley Turnage.
First popcorn since surgery!
Sunday, 6/16/13: FATHER’S DAY VISITORS
Best sleep since I got out of the hospital. Slept four hours straight through, got on the iPad for about 45 min, then slept for another three hours. I felt great all day. Am trying to stretch out the pain meds to 5 hrs or more. It’s only tough when I walk around and the pain meds have worn off. I’d really like to get off of them as quickly as possible.
Feeling sad because my daughter flew back to Portland today. She will be back in a few weeks, but I will still miss her.
Completely forgot to take my blood thinner until after 2:00pm, the first time I’ve done that. I made the kids buy me a pill case the other day so I could keep all my morning and afternoon medications straight. I’m going to put the alcohol wipe in the morning section to remind myself of the injections.
Treated ourselves to What-A-Burger for dinner after the dog park (first junk food post surgery!), called my dad, and watched Smoke Signals in honor of Father’s Day. I pretty much napped off and on all evening on the couch. Nick loves to make fun of me for falling asleep all the time. Woke up at midnight just as The Shining was coming on, so Nick, Nicole, and I watched it until 3am. I, of course, fell asleep repeatedly.
6/17-19/13: SETTLING IN
The rest of the week the family and I tried to settle back in to our lives. I have had a lot of visitors, but this Monday we managed to have our first visitor-free day since being admitted to the hospital. I continued walking in the evenings and made it up to 1 mile.
The stress of dealing with everything hit Michael the other night and he had a little meltdown. It’s to be expected. Everyone deals with tragedy in their own way.
I finally sat down and listened to the 45 minute recording of Dr K talking to my family directly after surgery. It was tough. While my family was celebrating the fact that she got all the tumor, she brought them down to earth with the reminder that this is still serious. The most sobering moment for me was when my daughter asked what are the chances the cancer will return, and she answered 85-90% chance it will return. I had no idea. I’d rather know the truth than have everything sugarcoated for me.
She took 25 lymph nodes to be biopsied, in addition to tissue from all my major internal organs. Now we wait until the pathology report comes back to see if it has spread. In the meantime, I need to start reading up on chemo.
The days from surgery to being released from the hospital are a blur, a mixture of pain, anesthesia, pain medicine, visitors, deep discussions with family, laughter, disturbing dreams, and small walks around the hospital wing.
Saturday: DAY ONE POST-OP
I woke up to an abdomen and lower chest completely covered in white surgical tape and a bump under my left breast (the port for chemo). I woke up to pain. I woke up in a new mustard colored hospital gown. But at least I woke up.
That first time trying to get up out of the hospital bed was excruciating. The nurse had to literally pull me up to a sitting position because I had no core muscles to help me. I vaguely recalled one of the doctors drawing a line from my lowest abdomen to just below my breasts right before surgery. I could even seen the top of the marker line above the bandages, which meant they hadn’t had to go quite as high as they had expected.
I had been sliced open and stapled back up again.
The first day is a blur. I remember lots of visitors and falling asleep at random times. I remember my tiny room being full of family members, all of them talking at the top of their voices to be heard, and worrying that we were going to get in trouble for making so much noise. I remember feeling completely exhausted and asking them all to leave, but not really wanting them to go.I also wasn’t sure how much pain I should be feeling, and I was very conservative with the morphine. So much so that I was in more pain than I should have been.
I discovered that I had almost been put in the ICU after surgery, something the anesthesiologist wanted to do because he was concerned about my pain management. My room had been packed up when my husband came back to the room after surgery and was told by the nurses that I was in ICU. My doctor stepped in and assured the anesthesiologist that sleep was more important than managing my pain, and that I would get no rest in the ICU. I am so thankful they let me come back to my room.
The new mustard colored gown meant that I was a “fall risk” and was not allowed to stand up or walk without a nurse. Later in the afternoon I took my first walk. My entire “pack” (my family) came with me. I was amazingly slow. One of the nurses at the front desk got a real kick out of seeing this huge parade of people walking with me. She said, I’ve never seen anything like that! I wondered if she really meant it or was just saying that to make us feel special. I was surrounded by love and felt sad that not everyone had a pack to walk the halls of the hospital with them.
Sunday: DAY TWO POST-OP
The nurses had warned me that sometimes day two is worse than day one. They weren’t kidding. The first time I climbed out of bed to shuffle off to the bathroom, it felt very clearly like someone had sliced me in two. The first day I was one big hurting ball of pain. The second day I seemed to feel the remnant’s of the razor-sharp knife’s edge with every step I took.
My entire hospital stay I had had the most wonderful nurses. Every single one had been like an angel, always there to help me when I needed it, always patient with me, and always, always telling me how great I was doing. Three nurses in particular helped me the most in those difficult first days after surgery: Donna, Bob, and Stephanie. You could tell that these three nurses loved their jobs. I heard over and over how 3 South was the best floor to be on in the entire hospital, and how lucky they felt to be there. I can’t say enough about these nurses. They have become like family members now and I plan on staying in touch with them.
I am very independent, and asking people for help is not something I’ve ever been comfortable with. That’s changing now. I know that most people want to help, and many times they don’t really know how. For these people, I knew letting them come to visit would help them as much as it would help me, so I had a lot of visitors after surgery. I’m part of a large grassroots running group in Dallas and I had a lot of support from these runners. Their visits gave me strength and kept me too busy to worry about what I was going through, but every night, by the time the last visitor left, I was exhausted!
The nurses and doctors were amazed at how well I was doing. Several nurses told me they were going to take up running. Except for the pain of the incision and feeling like all my internal organs had been jumbled up inside my body, I really did feel good. My appetite had come roaring back and food tasted good again. I had figured out how often I needed to push the pain pump to keep my pain at a level 0 to 2, which made a big difference.
Later on in the second day, because I was doing so well, Stephanie whispered that I might get to go home tomorrow. She was so excited for me–but I wasn’t. I wasn’t ready to go home yet! I wasn’t ready to leave the safety and security of my hospital home, and I had visions of going home and having to pick up all the chores, cooking, and cleaning, as if nothing had changed. It was terrifying to me and sent me into a funk.
In the evening, the kids had the idea to borrow a wheelchair and take me for a little spin down to an area that had been turned into a garden. I was game, so we hustled up a chair and took off. Unfortunately the garden closed at 9:00pm, so the kids took me outside for a short walk instead. Two problems: one, it was in the 90’s outside and very humid; two, sidewalks are very bumpy and wheelchairs have no shocks. I felt every single crack in the sidewalk and every bump and it was very, very uncomfortable. When I’d had enough of both heat and bumps, we discovered that the door we came out of was locked from the outside. Great. We eventually found a way back in and discovered I had a late visitor (who did not follow my directions about calling first and not coming later than 9:00pm–that’s a teacher for you! Of course I didn’t mind. You know who you are!).
Monday: DAY THREE POST-OP
I have a strange habit of naming the things I own. My car is Indigo (because of her color). My down jacket is Big Puffy (kind of obvious). Michael’s down jacket is Great White (again, kind of obvious why). I continued my strange habit in the hospital. My IV stand became Big Al because of the brand name Alaris on the front. And the button I pushed to dispense morphine through the IV became Penny the Pain Pump. Today was the day I lost both Big Al and Penny.
Becoming disconnected from the IV machine was HUGE. I still had to have one IV in my arm until I was released, just in case there was an emergency, but being able to move around freely was amazing. I was transitioned over to pain pills (hydrocodone) and it was a little disconcerting not to be able to push the pain pump whenever I needed it, and having to figure out when I needed to take another pill (it’s also not always easy to tell what your pain level is). I had the catheter removed as well so I was completely machine free.
The nurses had also been giving me a daily injection of a blood thinner since surgery (because of the two blood clots) and I knew I would have to do it on my own when I got home for the next six months or so until I was done with chemo. Stephanie gave me a lesson to show me how it was done, and tomorrow I would do it on my own. Only there was a mix up and she only gave me half the dose, so I got to give myself my first injection ever later that morning. It was weird. It didn’t hurt, but it was strange to stick a needle in my abdomen. Maybe the pain meds helped dull the pain.
The pain meds did nothing, however, when the two male doctors decided it was time to remove the white bandages from my abdomen and look at the incision. In their haste to remove the bandages, they were not exactly gentle. In fact, their technique, rubbing little alcohol pads on my skin as they pulled the sticky tape off, felt like being rubbed raw with sandpaper. No kidding. I glared at them both when Nurse Stephanie walked in and told them it would all come off “no problem” if they used the antiseptic foam by the door. By this time they were more than two-thirds finished with the job, so they pretty much ignored her. Grrrrr.
Finally, it was time for the reveal. I now had a zipper going up the length of my abdomen and lower chest. I made Nicole measure the incision (just shy of 9 inches long) and count the number of staples (39). I took a good, long look at myself in the mirror. My entire abdomen and back were swollen like Sponge Bob, and my stomach was lumpy. I had lost a lot of weight. I had also lost my booty–and I had a lot of booty to lose!
The incision didn’t bother me — I was kind of proud of the scar — but the swelling was bizarre. It was determined I was no longer a fall risk and I was put back in a blue gown and allowed to walk without assistance.
Tuesday: LAST DAY IN THE HOSPITAL — Not!!!!
It’s 6:30am. I’ve been awake since 4:30am, which seems to be my usual hospital morning pattern. I’ve grown to love this early morning alone time, a chance to check emails and FB, read blog posts, or gather my thoughts. I’ve done no writing since the night of the colonoscopy liquid, mainly because I’ve had so many visitors.
I look over at my beautiful daughter sleeping in the cot across from me, her hair strewn around her face. I go over to her bed and pull the covers up around her and a wave of love and gratitude washes over me. How did I ever get so lucky? My children have been amazing. I can’t imagine being on the other side of this and taking care of one of through major surgery. They have handled everything beautifully. I am truly blessed. I am speechless at the depth of their love for me.
I’m ready to go home. I was scared of this day arriving, thinking I wouldn’t be able to handle it, but I’m ready. I feel stronger than ever and I’m ready to move forward with my life. I’m excited for the future. Bill set up a WRRC team page last night to walk the National Ovarian Cancer Coalition 5K in September. I would like to merge with the St Paul nurses’ group and walk together. I think I would like to walk rather than run to include all my non-running friends as well. I want to be with my dogs. Michael brought them up to the hospital last night. Shasta seemed relieved to see me, and Nevada was, as expected, afraid of the wheelchair and uncertain as to what was going on. Both dogs kept looking back at me as Michael walked them back to the car. I’m going to pamper them when I get back, especially Nevada, who hates changes in her routine. It’s been a tough week on both man and beast.
I cannot go home until I pass gas. Dr K says we have to wait until my bowels “wake up” again after surgery. I have put out an alert to all my closest friends for a Pass the Gas Prayer Club. It’s my only hope of getting out of this joint.
I have done zero reading, knitting (kind of hard to do with IVs in your arm), or watching TV my entire time in the hospital. After my experience trying to find something on TV the other night while drinking the GoLYTELY, I guess I gave up trying to find anything else to watch. The family and I tried to watch a documentary on the Western States 100 trail race, but it was impossible for me to keep my eyes open.
We also had an incident at around 3:00am with a 98 year old patient across the hall who screamed all night long. I felt so bad for her. I knew she must have Alzheimer’s or something, and was probably alone, and when I asked the nurse about it in the morning she called the lady “just precious” and a “feisty little thing” because she fought off the nurses all night, thinking they were robbers in her house. They eventually had to sedate her.
Wednesday: I FINALLY GET TO GO HOME
Michael spent the night because my daughter was exhausted after getting almost no sleep the night before. She is not used to how crazy things can be in a hospital at night.
I was definitely ready to go home. My papers were drawn up, I had already been officially labeled “discharged” for two days on the dry erase board in the nurses’ station, and I was more than ready. When there was still no passing of the gas by the early afternoon, I started to mope and plan on spending another night in room 377.
Miraculously, it happened! When I burst out of the bathroom and announced the good news, I thought my nurse, Adair, was going to start crying.
Things moved quickly after that. My discharge papers were signed, Adair went over my release papers and prescription information, and the kids were put to work packing all the flowers and gifts in boxes to take home. We looked like a floral shop as we walked out of the hospital.
It was time to say goodbye to my amazing nurses, Bob and Stephanie. I had grown to love them like family, and I would miss them. I also knew, however, that we would stay in touch and that I would come by and see them every time I went to see my doctor and to do chemo.
Leaving was bittersweet. Being home again was just plain sweet. The dogs were so happy to have me home. Nevada seemed to relax and sigh. All was right in her world once again.
After a walk around the block with the dogs and settling back in at home, everything was right in my world once again as well.
To be continued . . .
6/7/13 Friday: RELEASING THE MONSTER
On the morning of surgery I woke up at 3:30am, more than likely because someone came to take blood, my temperature, or my blood pressure. The nurse said they wanted to do an ultrasound on my legs before surgery to see if there were any more clots. They had scheduled me for 5:00am, but had asked if they could go ahead and get me early since they were very backed up. Since I was already awake, I didn’t mind at all, so I pulled out my iPad and checked emails until they came to get me. In reality it would be 5:00am before they actually got to my room.
Despite the fact that I was going to have major surgery later in the day, I felt great. The song Safe and Sound (Capital Cities) was playing incessantly in my head. I had started hearing the song on the radio a few months earlier and loved it, and we heard it in the car on the way to our first meeting with Dr K. It was always in my head in the hospital, and the morning of surgery I played the YouTube video and posted it on my facebook wall page, asking everyone to play it and sing it while I was in surgery. It had become my own personal anthem.
Being in the hospital had made me start to think of the tumor as being something from the movie Alien. I have no idea why this was. I really didn’t have any bad feelings towards the thing, but I did keep envisioning that scene from the movie where the alien pops out of the guy’s stomach, slimy teeth and all. I started thinking of it as the Alien Monster Baby.
Dr L came by later in the morning. Dr L is very serious and very matter of fact. I made it my personal mission to catch Dr L off guard, ask him random questions, and make him laugh whenever I could. Since I had just posted the Safe and Sound video as my personal anthem, I asked him if he listened to music in the operating room. He said sometimes, depending on the type of surgery and the procedure. I asked him what kind of music they played. He kind of smirked and said the technician played Top 40. I really wanted to ask him what kind of music HE listened to, but thought it might be too much.
He tried to escape, but I wasn’t done. When getting my ultrasound at 5:00am, and calculating how little sleep I had gotten (again), I had thought of another random question that would be perfect for Dr L: If I got three hours of sleep last night, and the surgery lasted five hours, would that count as my eight hours of sleep for the day? He shuffled and looked away nervously, laughed and said, “No, those are two completely different kinds of sleep,” and left as quickly as he could get out of the room.
Dr L is my very own personal Christina Yang from Grey’s Anatomy.
I felt anxious but also relieved that the tumor would soon be removed. I was tired of being in pain and tired of having no appetite. More than anything though, I was ready for a shower. The nurse disconnected my IVs and covered both forearms in plastic, taping them shut so no water could get into the IVs. That shower was the highlight of my hospital stay.
After the shower the rest of the morning was spent relaxing with family before surgery, which was scheduled for 1:00pm. A doctor had come by earlier to initial the side of my abdomen where the affected ovary was located, and I was in good spirits.
I played Safe and Sound one last time before surgery. Another song played and we kept talking. The third song was Coldplay, Warning Sign. My son suddenly stood up and said, “Okay, I think I’ve had enough of the music.” I thought he just didn’t like Coldplay, but quickly realized he was crying. I looked over at Michael and his eyes were becoming red and he had a panicked look on his face. I diffused the situation as quickly as possible.
I texted my sister, who was in charge of offering comic relief while I was in surgery. My text said: Please hurry up and get here! The men are falling apart!!!
Eventually, my husband, my kids, my sister, and my friend Liz were all hustled upstairs to the pre-op room. Two anesthesiologists came in, then a third, to discuss the risks of anesthesiology and the decision not to have an epidural port put in because of the blood thinner, Lovenox, I was taking for the blood clots. I hadn’t been thrilled about the idea of having an epidural anyway, so I was relieved the option was off the table. Someone talked to me about donating part of my tumor for research, which I agreed to do if it could help someone else in the future, and I signed papers for that.
I told every doctor who came into the room not to give me any more IV’s unless I was asleep. I was pretty adamant about it. After having to have another IV put in for the CT scan, I was down on IV’s. I was tired of being hurt. I wanted to be sedated.
It was like a party in the room. I had somehow morphed into a stand-up comedienne during my entire hospital stay, and I had no idea why. Maybe it was the pain meds, maybe it was nerves, or maybe just my way of coping, but my entire family and I were constantly cutting up and laughing. We were still going strong in the pre-op room, and I had to make everyone promise not to get us kicked out of the hospital while I was in surgery. I needed a room to come back to!
Dr K stopped by to initial my abdomen again (the previous doctor’s initials had come off in the shower) and to check in with me. When she left, I saw she had forgotten her marker on the table beside me. Oooohhh, very dangerous move on her part. The wheels started spinning and I asked the family what they thought about writing a little message or picture on my stomach for serious Dr L. Of course they jumped all over the idea and I quickly had to rein them back in from wanting to turn my abdomen into a graffiti filled billboard. I had my daughter draw a small smiley face and write “Hi Dr L!” underneath it.
I had visions of him being so shocked he passed out in the operating room, so when he checked on me just before surgery I fessed up and told him what we’d done. He was genuinely delighted and amazed that we thought he needed to “lighten up.” I finally asked him what kind of music he likes to listen to and he said we “might be surprised.” Thinking he was going to say he liked country music (no way), he admitted he likes to listen to 70’s classic pop, like Neil Diamond. Not quite the Yo Yo Ma that I suspected (though he said he had seen him play in concert before), but not so surprising. I would have loved it if he had said he liked to listen to country music.
I apologized to my family for anything I might say after the surgery, before the anesthesia wore off. From the moment I entered the hospital I seemed to have no filter. I knew it could get me in trouble if I was zonked out on anesthesia and pain meds.
My daughter’s flight from Portland was delayed 25 minutes, but as one o’clock came and went, and we learned that Dr K’s three small surgeries had taken longer than expected, we realized Dominique had a real shot at making it to the hospital before I went into surgery. Indeed, we got to spend almost an hour with her before they finally wheeled me out of the room around 4:30pm — three and a half hours after our planned time of 1:00pm.
Saying goodbye to my family and Liz was strange. Everyone looked so worried. I had to keep reassuring them that everything would be okay — and I really meant it. I wasn’t worried at all and knew that I would be fine. I remember someone telling me they were going to give me something to relax me, me saying “good, I need that,” and someone putting a cap on my head and trying to shove my hair underneath it.
The last thing I remember is asking the doctors if they could sedate my husband so he would stop taking so many photographs.
In the next instant, my eyes were closed and Dr L was telling me that everyone saw our little joke on my belly and thought it was hilarious. The clock above my head said it was 10:30pm. How could that be? I was conscious but I could not for the life of me open my eyes. It was too much effort. My entire upper and lower abdomen was one huge white bandage. I had new IV’s on both wrists and arms. I had a hard plastic thing inserted under the skin below my left breast.
I don’t remember how I got back to my room. I do remember Michael leaning into me right after surgery telling me that we will be staying in Dallas for a long time, that I will have to see Dr K every three months for the rest of my life. I reassured him not to worry about that now. I wondered why he thought that was so important. I didn’t care where I lived as long as I was alive.
I was in my room surrounded by my family. I told them just because my eyes were closed didn’t mean I couldn’t hear them. I was alive. I was so out of it.
We stayed up talking and had “Family Therapy.” Dominique said I looked like the Dalai Lama sitting up high on his throne, eyes closed, dispensing clairvoyant information. We talked and talked. I told everyone some changes we needed to make as a family. Some things seemed crystal clear, others completely unimportant.
I knew the anesthesia was going to make me act weird. If there were any vestiges of my verbal filter left before the surgery it had been nuked out of existence once and for all by the time I got back to my room. Nothing seemed more important to me at that moment that getting my life in order and setting some things straight.
It was hard to talk. My mouth felt like it was one big cotton ball. Michael and the kids had to keep swabbing my mouth and gums with these little sponges on sticks that the nurse gave us. This cottony dryness lasted for days after the surgery and was very unpleasant.
We talked. We laughed. We cried. My family is so patient with me. I am bossy and selfish and they waited it out with me.
Finally, at 3:30am, I couldn’t stay awake any longer. My sister and the kids drove home and Michael slept on a cot in the room. Apparently I moaned a lot in my sleep. I remember having nightmares in my sleep, dreams of lions eviscerating another animal as I watched.
And for the record, the alien monster baby was officially 13.8 cm long and weighed half a pound. We might have photos of the little beauty, twisted and ruptured in all his glory–but I’m pretty sure you won’t want to see them.
To be continued . . .