Tagged: mucinous epithelial ovarian cancer

Even Rock Stars Trash Their Hotel Rooms

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.

Rock group

They’re not trashing their hotel room, but they look like they might be thinking about it.

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.

Pacing the Tiger’s Cage

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.

Beer at Fuzzy's Tacos

Some of the WRRC when they’re not running.

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.

Photo courtesy of: Dcoetzee (Own work) [CC0], via Wikimedia Commons

The Best Bad News We Could Get

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.”

Removing surgical staples

Removing the staples. It didn’t hurt at all. Really.

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.

Staples

The removed staples.

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.

Back Home Again

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.

Eating in bed

Donut pillows make the best plate holders for eating in bed.

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.

WRRC

White Rock Running Co-op, my running group

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.

Runners

The fast guys at the front

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!

Kilt

The indomitable Dane, who’s really a Scots, who proves that real men do wear skirts.

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.

Marine Corps Marathon 2013 shirt

Hoping there’s some way I can still be ready for Marine Corps.

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.

Sliced Open

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.

Friends in the hospital

Hari and Bill and I using our Wonder Woman deflecting bracelets to keep me safe.

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.

Hospital walk

Donna offering assistance.

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.

Hospital walk.

One of my first walks with my pack.

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.

WRRC

A gift from Bill, my running group’s newest shirt.

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.

hospital food

First real food: TOAST and jello!

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!).

Kids in the hospital

The best kids a mother could ask for–and Nicole, who is like my daughter already.

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.

Hospital

My best friends, Big Al and Penny the Pain Pump

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.

Pulling off bandages

Pulling off the last of the bandages.

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.

incision

Yes, I really am showing off my zipper. All 9 inches and 39 staples.

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.

Family in the hospital

The only photo of Michael from the entire week. That’s what happens when you’re the photographer.

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.

Pack walk in the hospital

Walking with my extended family pack members.

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.

Room 377

My home away from home for one week.

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.

Flowers leaving the hospital.

It took a small army of helpers to get all my gifts and flowers down to the car.

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.

Home again

It’s good to be back home again.

To be continued . . .

The Birth of the Alien Monster Baby by Vertical C-Section

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.

Hospital gown

All taped up for my first shower.

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!!!

Hostpital bed

On the way to the pre-op room.

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.

Laughing through surgery.

Lots of laughter before surgery.

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.

Message for surgery

Our little surprise for Dr L.

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.

Hair cap for surgery.

Things are getting real now.

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.

Liz and Dominique looking worried as I’m wheeled away to surgery.

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.

On the way to surgery.

On the way to surgery.

Waiting room worry.

Nicole and Nick worrying during surgery.

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 . . .

Defeated By a Clear Liquid

6/5/13 Wednesday: A CHANGE OF PLANS

I woke up around 5:00AM and checked my email. I felt an instant wave of love and caring when I read all the messages from my friends and family. I am truly blessed to know so many good, kind, caring people.

Strangely, at that moment, going through this experience felt like an incredible gift I’d been given. It was an affirmation that people are good, life is good, and not to mess it up by being mean or cynical or hurtful. We’re all here to help one another. Anything less is unacceptable. Don’t waste time worrying about stupid stuff. And everyone has their own stupid stuff, so don’t worry about someone else’s stupid stuff either.

The doctor’s office called in the late morning to give me a few more instructions, to tell me my potassium was low and I needed to eat bananas, and that I was dehydrated and needed to drink Gatorade. I had been drinking water like a fiend and felt constantly thirsty, especially since the weekend, so the Gatorade was a nice change. Bananas, not so much. Nicole always eats bananas, so luckily there was one perfectly ripe one for me to eat before she got up. I felt bad about eating her breakfast, though.

At 11:30 Dr K personally called to tell me there was a change of plans. Based on yesterday’s lab work, my tumor marker test seemed to indicate higher numbers than last week. More worrisome was an elevated CEA (something to do with the colon). She had mentioned the possibility that this could actually be colon cancer that was manifesting in the ovary, so hearing this news was worrisome. Even worse, based on this new information, she wanted me to be admitted to the hospital that afternoon for a colonoscopy first thing the next morning, one day before the scheduled surgery. She had told me last week that she ordinarily would have had me do a colonoscopy before the surgery, but that we didn’t have enough time. She had decided that we needed to make time for one, and the only way to do this was to admit me to the hospital.

I don’t take unexpected changes well, and had a short freak out session about having to check myself into the hospital two days early. I calmed down, started packing, and the kids and I arrived around 2:15, with my sister, who just happened to pull up in front of the house as we were backing out of the driveway.

Checking myself into the hospital was a strange, surreal feeling, almost like checking myself into a health spa–but not really. An orderly came and I was taken by wheelchair to room 377, my home for the next seven and a half days. I settled in while friends sent texts, emails, and phone calls. Doctors came and went, and an IV was set up, with two attempts needed to make it happen (as usual).

IV machine

Me and Big Al, my companion for the week.

There was a new party in the house. Cindy, Nick, and Nicole kept things lively and fun. Liz and Allison came by, and Allison brought gifts: a big sippy cup and a plush, deep red blanket. She has been such a wonderful source of understanding and advice, having just had a double mastectomy herself. She chose her card very carefully because it highlighted the words courage, strength, and hope. She said I would need to remember those words and tell them to myself over and over. I put the card next to my bed on the table.

The kids decided to go out to dinner in the early evening. Taking our nurse’s advice, they went to The Mint in Highland Park, leaving me alone for the first time all day. I was glad for the quietness and the time to myself, but now that there were no distractions, I felt sorry for myself, too. Not much, but a little.

I was in the hospital, with an IV in my arm, and I was having a bowl of red jello for dinner.

The kids eventually returned and Michael was finally able to make it to the hospital after going home from work and feeding the dogs. More doctors and nurses came and went (the shift had changed), and just after 7PM they brought the colonoscopy liquid, GoLYTELY. Someone must have thought they were being really cute when they came up with that snappy brand name.

Holy moly. I had heard it was a lot, but it was 4 LITERS. In a jug! For me to drink 4 liters of anything, even water, would be a big deal. I had already been primed by lots of people, including the doctors, on how disgusting the solution is. I was pleasantly surprised. It really wasn’t that bad. A little salty, a little warm, but not half as bad as I expected. I had expected thick, chalky, and maybe brown. One doctor had even told me it smelled bad, but I didn’t smell a thing. It looked like water. I had the thought that it would probably taste better if it were chilled.

GoLYTELY

Why am I smiling? Because it’s still early in the evening and my stomach hasn’t turned on me yet.

I chugged. I took deep swallows by straw. I wanted to get this over with. When I asked the nurse what time I should have it finished by, she said midnight so I wouldn’t be on the toilet all night. I was shocked. Midnight! I planned on having that sucker finished off long before then, and peacefully sleeping shortly thereafter.

After drinking about five cups, my stomach decided to revolt. I started to gag. I almost threw up when I tried to swallow. I tried every mental trick I could think of. I told myself it was just water. I held my nose, didn’t take a breath, and sighed. And sighed again. Everyone tried cajoling me to drink, as if I were merely a petulant child who was too stubborn to drink any more. My stomach had had enough and was shutting down.

I put out an SOS on facebook and asked my friends for tricks on how to drink a jug full of this disgusting liquid. Several people suggested Crystal Light, but the hospital didn’t have any. The nurse suggested Sprite, but I always associate it with being a kid and my mom making us drink it when we had upset stomachs, which makes me feel instantly nauseous, so I refused the Sprite. Marilyn the nurse, who was so very patient with me, brought some apple juice to mix into the solution, but I still felt like hurling every time I took a drink.

By midnight I had reached my limit. I told Marilyn I couldn’t drink anymore, that it just wasn’t possible, and sent Michael and the kids home. Another nurse came in and told me they might be able to give me an enema or two in the morning to finish the job. All I wanted to do was try to get some sleep in between trips to the bathroom.

Ten minutes after Michael left Marilyn the nurse returned. She apologized and said that she had called Dr K who had told her I had to keep drinking. I wanted to burst into tears. I had sent everyone home and somehow had to do this on my own.

IV

If I close my eyes and pretend I’m asleep will the jug of GoLYTELY disappear?

The pity party began. I poured another cup and asked for a Sprite. I turned on the TV and tried to find something to take my mind off what I had to do. It was a very bad night for TV. Warlocks. Zombies. Infomercials. Political news.

I devised a system that enabled me to drink more liquid. I would take one tiny sip of Sprite, the biggest gulp of GoLYTELY I could handle, followed immediately by another sip of Sprite, all without taking a breath. By 3am I had only managed to drink two more cups of the stuff. I turned the TV back on and saw more shows about  warlocks and zombies. I found the hospital channel and a short informational show called How To Breastfeed. This will be great, I thought. I loved nursing my children. It will bring back good memories.

Within the first five minutes I was sobbing. Seeing all the babies smiling up adoringly at their mothers as they nursed certainly did bring back good memories. In fact, all I could think of was how I would give anything to go back in time to the first few days in the hospital after giving birth to my son and daughter. I cried remembering the love I felt holding my new babies, and how quickly time passed, and how could I now be in the hospital fighting cancer?

I felt utterly and totally sorry for myself.

By 5am I was exhausted and called it quits again, this time for real. Nurse Marilyn called Dr K again to tell her I was still struggling with the vile GoLYTELY, and she asked if I was at least trying to drink or just plain refusing to drink. I was proud that I wasn’t being so stubborn that anyone would think I was “refusing.” I just couldn’t muster another drink.

I had probably had a total of three more cups since midnight, amounting to just over half of the four liter jug. GoLYTELY had indeed done it’s job, but I had failed. Hopefully it would be enough to have the colonoscopy done later that morning. Nurse Marilyn was kind and patient with me, and remained positive and upbeat until her shift ended at 7am.

After pills, vitals, and blood work at 5am, I finally slept.

hospital

Ready to get the colonoscopy over with.

6/6/13 Thursday: MY FIRST COLONOSCOPY

I was nervous. Surgery to remove a tumor I could handle. It was the unexpectedness of having to come in early for a colonoscopy that threw me, coupled with the not-knowingness of doing something for the first time.

After getting a few hours of sleep, I woke up and felt very emotional. Michael had gone to work and the kids hadn’t arrived at the hospital yet. I was all alone. I sat in the recliner and looked out the window–which had the worst view in the world, nothing but a flat roof, windows across the way, and not one inch of sky to be seen. I started crying, feeling scared and overwhelmed, but when the nurses came in they thankfully ignored my red eyes and told me someone was coming down soon to get me for the colonoscopy.

I HATE crying in front of others.

At about 10:30am I was wheeled upstairs for the procedure. I was comforted to see there were a lot of other people there, in cubicles and in various stages of anesthesia. My nurse wrapped me in warm blankets, asked me questions, and flashed a pink sapphire ring very similar to my wedding ring. Since I hadn’t been able to wear mine all week, and having never seen one on anyone else, I immediately liked the nurse. I told her I was nervous and she treated me so kindly, telling me everything she was doing, and I soon felt at ease.

Eventually they wheeled me into a large room. There were strange machines I had never seen before. Oxygen was inserted into my nose, and I loved breathing in the clean, cool, fresh air. I had heard it was active sedation, but I remember nothing of what went on. The next thing I remember is trying to open my eyes and someone telling me everything looked great, that my colon was clear and they found nothing, no polyps. What a relief!

I was wheeled back to my room, and for the life of me I could not open my eyes. I was very groggy, and when the orderly stood me up and walked me to my bed I felt a sudden wave of nausea and started heaving. I was so embarrassed, and I HATE throwing up, but someone managed to grab a plastic tub and I kept the room vomit-free. In hindsight, I felt that perhaps they rushed getting me back to my room and standing up again. I’m sure they have their reasons (lots of patients waiting for colonoscopies, probably), but I decided I had to take it upon myself to let others know the next time I’m sedated that I need to be eased back into consciousness slowly. I’m sure being sedated on a completely empty stomach didn’t help either.

The rest of the day was mostly one visitor after another, and there was another CT scan scheduled for later in the afternoon. Since the scan in the ER had been done without contrast, Dr K wanted another one done so she could see the tumor more clearly before surgery.

ANOTHER CT SCAN AND A NEW CONCERN

CT scans are easy and actually kind of fun. I used to think the CT contrast was gross and too much to drink (35 oz), but after the attempted 4 liters of GoLYTELY the night before, I knew it would be a breeze. Also, one of Dr K’s  assistants admitted that all I really needed to drink was at least half of the solution and, armed with my new ammo, I made sure to tell the nurse how much I was planning on drinking–and not a drop more! They had also spiked it with Sprite, which helped.

The worst part was they needed to insert another IV. Apparently the one I already had wouldn’t accommodate the larger needle they would use for the CT scan. I was not happy about getting another IV. I made sure everyone knew it, too. (See, I’m not perfect, I can get very grumpy about some things.)

I made sure to flirt with the CT nurse, a big, burly Jersey Shore kind of guy who took my hand and thanked me afterwards for being such a great patient. After the scan (I was surprised that this scanner had an American female voice instead of Methodist Hospital’s British Accent Man) I was taken back to the room and looked forward to a quiet, relaxing evening with the family in preparation for tomorrow afternoon’s surgery. I like to ease into scary situations and get my bearings first.

UT Southwestern Medical Center

Yummy red jello for dinner.

But, it was not to be. Within an hour or so of the scan, during dinner, Dr Lin came to the room with “unfortunate” news. Two very small blood clots had been discovered in my lungs. He explained about deep vein thrombosis and pulmonary embolisms being deadly, and told us this would have an impact on surgery. Dr K came by shortly thereafter and told us that blot clots changed the game, that they were almost always a marker for malignancy when tumors were involved. I heard the words “cancer” and “malignancy” used several more times, and asked her point blank if she thought it was cancer. She said yes.

It was a sobering moment.

We had two options: either take blood thinners for two weeks and postpone the surgery, or insert a filter into a major artery from my neck which would act as a clot catcher to catch any other clots that might travel up from my legs and into my heart and lungs before and during surgery. The filter would be removed a month or so later. Dr K didn’t want to wait two weeks; she wanted to remove the tumor tomorrow, as scheduled. I agreed. I couldn’t imagine another two weeks of worrying, not eating, and being in pain from the massive tumor (which the new scan now showed as being 13.6 cm).

My nice quiet evening had suddenly morphed into something very scary and unexpected. And dinner was shot.

The filter insertion would take place within the hour. More doctors came to the room to discuss the procedure, consent forms were signed, and Michael and I thanked our lucky stars that we had gotten married in January and switched me over to his much better insurance.

Nurses

Sean and Jay

I was whisked to a new room, and this one looked like something straight out of the movie Alien. The machines were huge, it was freezing cold, and it felt like I was in the center of a huge spaceship. There were multiple large TV screens around me. The nurses, Jay and Sean, were hilarious. One told me I had saved him from a really bad movie (After Earth) and the other was buying sod at Home Depot when he was paged. They seemed genuinely thrilled that they had been called back to work. You could tell they LOVED their jobs, which was very comforting. As they were preparing me for active anesthesia (I would be awake the entire time), a beautiful nurse from Africa showed up. When one of the men mentioned something about me being a runner, she leaned over and said quietly in my ear, “I am from Kenya and I am going to beat you in your next race!”

Game on. Oxygen was inserted into my nostrils, only it wasn’t the clean, fresh-smelling kind from the colonoscopy. This oxygen almost burned my nostrils and I made sure I told them about it. They said maybe it was turned on too high and it did seem to help when they turned it down.

One of the men told me the huge machine I was under was actually an x-ray machine. I was asked to turn my head to the left and a large sheet of paper was placed on top of my head. I must have involuntarily flinched because Jay asked if I was claustrophobic, which I affirmed. He made sure there was an opening I could always see out of, and at times I would see a face peering in at me, asking if I was okay.

The procedure itself wasn’t painful, but it was certainly odd. I felt pressure on my neck at times, and was aware that they were guiding a tiny octopus-armed filter down my vein, but I never felt pain. It was more uncomfortable than anything else, and maybe that was because it involved metallic things being inserted into major arteries in my chest. When it was over, I asked how come they hadn’t sedated me like they said they would, and they said I had been sedated. I asked to see the filter on one of the screens, and indeed it looked like a little octopus somewhere inside a vein in my body.

Afterwards, it was back to the room to inspect my new, huge neck bandage and a walk down to the entrance of the hospital. I needed fresh air. As we passed the gift shop, I couldn’t help but notice a large sign on the door: THE GIFT SHOP WILL BE CLOSED ON SATURDAY FOR INVENTORY. I joked with Michael about how I was having surgery on Friday and how would anyone be able to buy me gifts the next day if the gift shop was closed? Unfair! And who does inventory on a Saturday, the busiest visitation day of the week??? As I told Michael, the first of many times, I need to tell someone about that!

I was powerless against cancer, but by God I could at least try to control everything else.

To be continued . . .

hospital bed

Exhausted but ready for some sleep before tomorrow’s surgery.

Oh, the Pain

5/30 – 6/3/13 Thursday-Tuesday: WHY WAS I SENT HOME????

The next six days were spent mostly in a haze of pain, trying to stay as still as possible and occasionally having to shuffle off to the bathroom, one inch at a time, bent over like a soldier holding his guts in on the battlefield. The ER doctors said I would be in pain, but did they not realize how much pain that would be? Is my 8 only a 4 in the ER?

I did want to let my family doctor, Dr F, know what had happened in the ER, so I decided to swallow my fear of being THAT patient and call him on his cell phone. I have had the same family doctor for 22 years, since my first year of teaching. He knows everything about me and is always accessible. I saved his phone number the last time he called to check up on me, thinking I might need it one day. That day had arrived.

Dr F was happy to hear from me and assured me he would get copies of the tests that were run in the ER and let me know the results. I was especially anxious to know if the CA-125 tumor marker test showed any elevated numbers, which might be indicative of cancer.

He strongly recommended that instead of going to the hospital clinic I see a Gynecologic Oncologist he had sent patients to in the past at UT Southwestern Medical Center. He said if there was any chance this could turn out to be cancer he wanted me to have someone doing surgery who specializes in this specific area. He promised he would make an appointment and get back to me.

He asked if I was in pain and if I was eating. I had to admit, the pain was so strong it completely took away my appetite. When I told him the ER had prescribed ibuprofen he said, “that wasn’t very nice of them,” and called in a prescription for Hydrocodone.

The Hydrocodone was like manna from heaven. It enabled me to eat a little soup and crackers, and I could walk a little straighter. It also knocked me out, and the rest of the day was a mixture of falling asleep, trying to get comfortable on the couch, trying to focus on the words on the page in the book I was reading, and worrying about the future.

Dr F read the results from the CA-125 tumor marker test. When I asked about it he said he didn’t have much faith in the test, that it’s really only effective during chemo, for instance, when the numbers can be compared each time it’s given to see if cancer is more or less prevalent during treatment and after a specific amount of time. His answer signaled to me that the numbers were elevated and he didn’t want to alarm me. Even if he didn’t have much faith in the numbers, if they were low he would have told me. I didn’t let it bother me, but it was a red flag.

He was able to contact the new doctor, Dr K, and it was a testament to her dedication that she left surgery to take his second call after she heard my symptoms. She said she would be happy to see me in her office on Tuesday, the earliest day she could see me, to discuss what was going on and to schedule surgery, but she also stressed that if the pain became unbearable I should check myself into the hospital for emergency surgery. My personal preference was to avoid another emergency room visit and to see her and have a planned surgery, so I planned on hunkering down for the next few days and gutting it out until I could see Dr K.

Armed with hydrocodone, heating pad, cable TV, and my iPad, I did nothing but rest. I tried to eat, but all I could muster was Saltine crackers and clear soups.

6/4/13 Tuesday: THE DAY THE WORLD STOPPED SPINNING

I woke up at 3:23AM and could not fall back asleep. Without waking Michael, I plugged in the heating pad and searched the internet on my iPad for a blog to read to learn more about ovarian cancer. Thankfully, I found one that was good enough to keep me preoccupied until Michael got up at 7:30AM.

The entire day felt like a dream. After phone calls back and forth about the new doctor needing a copy of the CT scan and ultrasound films, packing a small bag to take “just in case” they decided to keep me overnight, running over to Methodist Radiology to pick up the disc with the CT scans, and trying to eat some chicken noodle soup (deliciously salty), I felt numb.

Picking up the disc from Methodist was incredibly easy. Traffic was insane. I had about forty-five minutes of waiting at home before having Nick and Nicole drive me over to the cancer center. I sat in silence. I felt like I was going to my own execution. I was filled with dread with what Dr K might tell me.

Would I find out today that I probably had cancer? Would I be told that I was going to die soon?

I felt like I was standing on the edge of a mass grave, one filled with the bodies of millions of women, all killed by cancer. A female holocaust of ovarian cancer.

I felt separate from the outside world, apart from everything around me. I felt different, an outcast. There’s a killer inside me, I thought.

I felt like I did when I finally decided to ride the double loop roller coaster at Six Flags with my son when he was in high school.  Just like on the roller coaster as it  reaches the top of the first hill before the steep plunge into the loops, in that moment of accepting you have no control, I would have paid anyone any amount of money to stop the ride and let me get off.

I felt trapped. No escape.

I felt that, no matter what, it was completely out of my control. There was some peace in acknowledging that, in allowing myself to let go of the branches from the side of the riverbank and glide down river.

The drive over was very quiet. One of my current favorite songs played on the radio (“Safe and Sound,” by Capital Cities), and I took it as a good sign. Two more high energy songs came on afterwards and it had an immediate effect on my mood.

We pulled up to what felt like a luxury hotel. Valet parking, circular stone driveway, and a massive, amazing Chihuly sculpture in the lobby. I immediately regretted never making it over to the Chihully exhibit at the Arboretum last year. Oh well, I thought, at least I got to see this one.

The waiting room felt alive. It was noisy. There were a lot of people, but everyone was talking, laughing, smiling. I wondered how many of the people sitting there had cancer. Maybe they were all actors, hired to sit there and look happy and alive, to give the real patients some hope.

I noticed a sign on the table which said, in big letters: If you have to wait longer than 15 minutes, please tell the receptionist. I was impressed. Sure enough, within eight minutes or less, barely diving into the four page health questionnaire, my name was called. My weight was taken, blood pressure taken (116/78), and we were shuttled back to an exam room where I continued to fill out the form. Dr K walked in less than three minutes later and introduced herself. She needed the form to be completed right then, my husband probably didn’t know where to find us, and I was stressed from the extreme efficiency of the office! She left to find Michael and returned, hubby in tow, just as I finished filling out the questionnaire.

hands

I was nervous.

I immediately felt at ease with Dr K. She spent perhaps thirty minutes asking me in depth questions about my medical history, then about what specifically led to last Wednesday’s ER visit. She wanted to hear everything about what might be the cause of the cyst, and seemed genuinely excited by the mystery of trying to figure out exactly what this thing was.

For the first time in the past two years I feel like someone really listened to me about the confusing menopausal symptoms that have plagued me. One overarching trend I’ve noticed in my internet research has been how the majority of women feel no one is listening to them about their problems and issues. They mostly don’t feel like they’re being taken seriously. I’m glad my son’s girlfriend has been able to go through this with me so she can learn how to stand up for herself if she one day has to go through something similar.

THE PELVIC EXAM. OMG.

(WARNING, MEN! Uncomfortably graphic description of a pelvic exam involving lady parts!!!)

Wednesday’s ER pelvic exam was uncomfortable, but this was ten times worse. No matter where Dr K touched, it hurt. She did a full pap smear, scraping and all, then the two worst things you can imagine (or maybe you can’t): the Absolute Fist Clencher–two fingers inserted into the vagina with her pushing around on the belly and along the vaginal wall and cervix, and the Muffled Scream Move–one finger inserted into the vagina and one finger inserted deeply into the rectum.

Y’all. I am no sissy when it comes to pain. I run marathons. I had both children naturally, sans drugs. I suffered almost every single month from the ages of 14 to 23 with menstrual cramps so bad I would vomit at school and be sent home to wallow under a heating pad for the rest of the day. THIS was worse. Far worse. It was almost unbearable, and I was so embarrassed to react the way I did. I felt bad for Dr K because she kept apologizing for causing me pain, and I kept apologizing for how much noise I made.

After the Muffled Scream Move she shut down shop and stopped the torture. The next person who comes close to touching my pelvis again better have a knife in her hand and and a mask on her face or I just might lose it.

Doctor's office

Have we met?

After this she showed us the scans of the cyst on her computer. Once she explained what we were seeing, it was easy to see what all the fuss was about. Holy Toledo, it was massive. To me, it looked like a big piece of chicken shoved in between my hip bones, my stomach wall, and my spine. No wiggle room. No empty space. Packed in tight.

She said it was too bad her research students weren’t with her that day because it was such an instructive case. I liked that she was excited about figuring out what this was. She was like the CSI inspector of ovarian masses and my abdomen was the Murder Mystery Theater.

We scheduled the surgery for Friday afternoon. She didn’t want to wait and do a colonoscopy first (boy was I glad). She had three small procedures in the morning and said it worked out perfectly in her schedule. Because of the size of the mass, it would not be laparoscopic surgery. In fact, the scar would be quite large. Bikini season is over for this middle-aged mama. Maybe I will get a cool Jack and the Beanstalk tattoo to cover the scar.

She will be removing both ovaries. I had been hoping to save one of them, but she says it obviously isn’t working anyway and will only cause problems in the future. I may be in the hospital up to five days post-op, then more recovery time at home. I mentioned how training for Marine Corps Marathon begins at the end of June and she laughed at how we runners are “all the same.” Everything is contingent on what they find in surgery, but I could be running again within several weeks after surgery. But she emphasized that I will be very, very slow. Pace is completely irrelevant to me at this point. My goal is just to run again one day. Running Marine Corps would be nice, but I’m not going to push it.

We met her nurse and they gave me all their contact information. Once again, these women are organized. I can reach them online, by phone–they are always accessible. Very reassuring. We went over pre-op stuff (I will come back in on Thurs to meet the anesthesiologist and go over surgical stuff.) No solid food on Thursday, an enema Thursday night and Friday morning.

Listening

When we walked back out to the waiting room all the laughing families and happy cancer patients were gone. She had taken as much time as we needed with her. She wanted to check the tumor markers again, and five or six vials of blood were drawn.

I went home a completely different person. I felt upbeat, optimistic, almost giddy. Dr K made me feel that much better. I had gotten a few texts from my close friends during our long appointment, so it was time to start calling folks back and telling them the news about the impending surgery.

After dinner I called my daughter, who said I was “chirping like a little songbird.” Not quite, but I felt better than I had in a month, and I could see a light at the end of the tunnel. I debated posting something on Facebook, not wanting to look like I was trolling for sympathy or pity, but because I knew that my friends’ support and love would hold me up during the tough times ahead. I went ahead and posted a few details, asking for everyone’s “prayers, positive thoughts, and energy vibes,” and it was the best thing I could have done.

Later that night, I fell asleep on the couch while watching TV with Michael and Nicole. I was exhausted, and slept like a rock, waking up occasionally, not believing I couldn’t keep my eyes open. I groggily checked my email when Michael went to bed and was brought back to reality when I saw all the Facebook messages from my friends and family.

Oh yeah. I’m having surgery on Friday. I forgot.

Embracing the fact that my sleep patterns have been all over the place this past week, and acknowledging that I get NO writing done when either of The Talkers, Michael or Nicole, is awake, I sat in bed and wrote for an hour or so while Michael slept. I’ve been writing a lot the past two days, and writing helps. For some reason, when I’m anguished or in trouble, I need to write. That’s when I truly find my voice. It’s what got me through childhood, adolescence, and my divorces. Writing and reading in the late/early hours of the day, when the world is quiet and everyone else is asleep, is my salvation.

Finally we had a plan to remove the tumor and get rid of the pain. I had two days to wrap my head around the idea of surgery, to get caught up on some writing, and to get my things packed.

Or did I?

To be continued . . .

Hello, My Little Friend

THE ER

The emergency room of any hospital is a strange place. Ask anyone who has been there. The kids dropped me off at the ER and I walked in to register. I was relieved to see only one other person waiting. I was in so much pain and my hand was shaking so much I couldn’t fill out the registration form. I had to ask the nurse if she could fill it out for me. I slumped over the edge of the counter as I gave her my personal information.

I spoke to the check-in nurse briefly, gave all my insurance info to another woman, then waited some more. We probably waited an hour, and the ER waiting room slowly filled up. I enjoyed looking at the clothes people wore to the ER. There were a lot of track pants, but also a surprising number of six inch heels and tight, short, hoochie mama dresses. I bet there were some good stories connected to those clothes.

We were finally called back and told that all the rooms were full, was it okay if they gave us a curtained off area along the hallway? I laughed and asked if we really had a choice, and she said some people actually choose to wait for a room. I guess some emergencies are more private–and urgent–than others. My curtained cubicle was not bad, situated right across from the main nurses’ desk, and I asked to leave the curtains halfway open so I could see what was going on around me. No chairs are allowed in these cubicles in the hallway (fire hazard), so Nick and Nicole squeezed onto the end of the bed with me. I was just glad to be in a bed. The pain was definitely an 8 by now.

emergency room

Just happy to be in a bed.

A nice nurse gave me a gown and a warm blanket, and a young paramedic put in an IV. It took two attempts. Ugh.

By far the worst part of any trip to a hospital, for me, is putting in an IV. They are not fun. The worst location to have one put in is on the wrist or top of the hand. No matter where they put it, it hurts. Maybe my abdominal pain was enough to divert my attention, but it really didn’t hurt too much this time, despite the fact that it took two attempts. The nice nurse came and asked the young paramedic why it didn’t work the first time, told him to “push right on through the valve,” and stood by for assistance on the second arm. I could tell he was a little nervous because we were all watching him.

More waiting. Dr H introduced himself, pushed at my stomach near the belly button telling me it sounded like diverticulitis, then frowned as I guided his hand down to the actual location of pain and told him my hormonal issues from the past few months. He didn’t seem convinced that it was anything other than diverticulitis, and eventually I was wheeled off for a CT scan–for the first time ever without having to drink the dreaded 35 ounces of contrast liquid. I guess I talked about hating it so much that they took pity on me. I sent the kids off for some lunch for themselves while I had the scan.

The man who wheeled me down to the CT room asked if I had ever had diverticulitis before, then was amazed when I told him I’d had the rare duodenal form twice. He literally oohed and aahed. I think it made his day. He didn’t know why they were doing the scan without the contrast, checked to make sure they weren’t making a mistake, then had me slide across the bed to the big donut-shaped tube. I took a few deep breaths when my old familiar buddy, British Accent Man, told me to, and then it was back to my “room” to wait for results.

spine

I have no idea where the cyst is in this cross-section from the CT scan, but at least I can identify the spine!

The nice nurse came by a little later with something for the IV. When I asked her what it was she told me saline, because the doctor thought I looked a little “peaked.” Oh, and this little vial here that I’m inserting into your IV? Morphine. Morphine! The effects were almost immediate and the pain subsided to about a 3. It was the first time I’d felt comfortable all day.

Dr H eventually came by with results from the CT scan. I had a cyst on my left ovary. A 10cm, “complicated” cyst. He said because of its composition (fluid and solid particles) and size, he was going to call someone from gynecology to come down and give me more information. Though he said it was too soon to start worrying about cancer, he admitted there was some cause for concern.

A cyst the size of a grapefruit. Well, hello, my little friend. This explained a lot about the bloating, tight jeans, and frequent trips to the bathroom.

I was calm. I was relaxed while I took in the news. I felt a slight sense of satisfaction that I was right about something being wrong with my hormones and ovaries these past few months. The idea of cancer, however, had never entered my mind. I told the kids I wasn’t worried at all, that except for the excruciating pain in my belly I felt strong and healthy. I ran marathons. I was thin. I had had two children. I breastfed both for a year each. I had none of the risk factors and no family history. I didn’t feel seriously ill in the least.

The gynecologist (or gynecological nurse, I’m not sure which) came down and explained more, telling me they wanted to run some tests to rule out all the “bad stuff” first. She said it didn’t mean there was anything to worry about, they just wanted to rule out the bad first and go from there. She asked me a lot of questions, then I was wheeled off to an examination room for a pelvic exam, which another gynecologist performed.

She was nice, but her cool demeanor wasn’t very calming. She seemed a little stiff and nervous. She spoke to me about torsion, which is when a cyst twists on itself and cuts off the blood supply to the ovary–which is “very bad,” though she didn’t explain why. She told the nurse to bring a pap smear kit, and I asked her if that was necessary since I’d had a hysterectomy five years earlier. Oops. She admitted she forgot I’d had a hysterectomy and apologized. Everyone makes mistakes, but it made her lose a little credibility in my eyes. Both doctors did a pelvic exam. This was not comfortable at all, even with the morphine. She said my stomach wasn’t too tight or hard, which was a good sign, and she didn’t think there was any torsion.

The cyst and ovary would definitely need to be removed, as soon as possible. She asked if I wanted my doctor to make all the arrangements or if I wanted to come to the clinic across the street. Maybe it was the morphine, but this is where I kind of spaced out. I wondered why my family doctor would need to be informed when he’s not a gynecologist, so she said she would schedule an appointment for the following Monday in preparation for surgery and that they would call me (they never did). Monday was still five long days away . . .

We were finally given our own room with a teeny, tiny TV monitor on a long, expandable arm that my son had fun annoying us with, and three chairs. Michael arrived from work, and we saw on the TV that it was storming outside. We heard nothing inside the hospital, and I was sorry to be missing a good thunderstorm. I thought about the dogs alone at home, who hate thunderstorms.

The nice nurse asked if I’d ever had a transvaginal ultrasound before, then told me about the grapefruit sized ovarian cyst she’d had years ago. She called hers a “chocolate cyst” based on the color of the fluid. Hers was removed, was noncancerous, and she went on to give birth to a son three years later. She knew all about the pain I was going through.

Emergency room

Waiting for the ultrasound.

A CA-125 blood test was given to test for tumor markers, then I was wheeled off again for an ultrasound. First the technician tried on top of my abdomen, but she said there was so much fluid inside my abdominal cavity she was having a difficult time finding either ovary. I asked if that was a bad thing, to have fluid in the abdomen, and what it meant, but all she would say was that it could mean different things. She next did a transvaginal ultrasound which gave her slightly better results. Both procedures were uncomfortable but not painful. The technician was very quiet and made almost no small talk, which was not very reassuring.

After getting to the doctor’s office around 11:00AM, and the ER around 1:00PM,  by the time we left the hospital around 7:30PM it had been a full day. The young paramedic removed the IV shunt while I joked about him leaving it in and giving me a vial of morphine to take home with me. Trainspotting Mom! Maybe my joking waved a red flag because I was sent home with nothing stronger than prescription strength ibuprofen (800 mg).

I felt I was leaving the ER with more questions than answers. I had a large ovarian cyst. It could be cancerous. It would have to be removed, along with the ovary and possibly the other ovary as well, no matter what the CA-125 blood test showed. I would still be in pain for the next few days.

In the meantime, the morphine was starting to wear off.

To be continued . . .

Cancer: And So the Story Begins

I am one of those people who probably tells more than they should. If I were a celebrity the tabloids would love me. I can be brutally honest, and I don’t care much what others think of how I live my life.

Last week something happened to me, something you might consider a “life changing event.” I was diagnosed with ovarian cancer.

This is my story. It’s long, so I’ll be telling it in segments. And stay tuned. Despite the inevitable ending (the same ending you will have one day as well, my friend), I plan on being around for a long time:

5/29/13, Wednesday: THE BEGINNING

I turned over in bed and felt a sharp twinge of pain in my abdomen. It was Tuesday morning. It was as simple as that.

I got up, ate an early lunch, and felt nothing the rest of the day.

The next morning the pain was back, only worse. I could barely walk to the bathroom. I had to sit on the bed while I brushed my teeth. It felt suspiciously similar to the duodenal diverticulitis I’d had twice in the past seven years, with the last episode just a year ago, only this time it was in a different location and I felt nauseous. I knew the drill: CT scan in the emergency room and antibiotics with lots of bed rest at home.

I called my doctor’s office, and they said they would fit me in. I took a quick shower and woke up my son and his girlfriend. The pain was so intense that I knew there was no way I would be able to drive myself.

In the back of my mind, I wondered if there was any possibility of this being related to some annoyingly odd issues I had been having. For the past four months I had been telling anyone who would listen, including my doctor and dermatologist, that something was out of whack with my hormones. I had been experiencing extremely oily skin, unrelenting acne, and hair loss. In addition, the last two months it dawned on me one day that I often felt full after three bites and that I was going to the bathroom a lot more frequently than normal.

My doctor said it was almost certainly related to too much estrogen, and advised I stop taking the estrogen patch he had prescribed six months earlier for some extreme menopausal symptoms I had been experiencing (mainly hot flashes and depression). The dermatologist told me acne was essentially incurable, then rattled off a long list of possible treatments, and we decided on a benzoyl peroxide facial wash, Pan Oxyl, a thin layer of Finacea each night (which the box says is for rosacea, something the dermatologist never mentioned),  and some type of pill to be taken that might kick the acne out of my system. I discovered at the drugstore that this pill was not covered by my insurance and would cost $1,000 out of pocket for 30 pills! Um, no. I was frustrated. I wanted to know why this was happening, not just what to do about it.

Bryce Canyon NP

What I did after seeing the doctor and dermatologist: went hiking in Bryce Canyon NP.

The benzoyl peroxide was harsh at first, but I did notice results, and the Finacea also seemed to make a difference. I continued to have breakouts, and they were the deep cystic kind of zits, but repeated dabbing with some Neutrogena Fight and Fade gel usually helped them heal quicker. Despite washing my face sometimes three times a day, every morning there would be a new crop of zits on my chin or along my hairline.

Even more distressing was the hair loss. I have always had very thick, fine-textured hair, so there was plenty of hair to spare before the hair loss would become noticeable. Also, I could wash my hair in the morning and it would be greasy by the end of the day. I felt like I was 14 again. I tried shampoo after shampoo, looking for something that would keep it from getting greasy so quickly, but without drying out the ends.

I was frustrated and felt mildly unsettled after seeing my doctor and dermatologist, as if my concerns were somehow not being taken seriously. Both doctors are excellent, but it all just played into my general unsettling sense of becoming more invisible to society the older I get. Of course acne is not life threatening, but I had just turned 53, dammit, and had already paid my dues years ago on that front! The hair loss was even more distressing, and I had visions of myself turning overnight into an old, hunched over, white haired crone with hair so thin you could see through to the scalp. I had a cane and was chasing kids and dogs off my lawn. I might even be missing a few teeth.

Angel's Landing, Zion NP

My death-defying hike to the top of Angel’s Landing in Zion NP a month before the pain shut me down.

One day, while playing Super Sleuth on the internet to find a reason and solution for the acne, I ran across a comment by someone who said her sister had suddenly begun having horrible acne in her 40’s, went to the gynecologist for a regular check-up, and was told “after one look” that she had ovarian cysts. That one comment was enough to peak my interest enough to start reading about ovarian cysts and cancer.

I did some digging and discovered ovarian cysts can indeed cause some of the same symptoms I had been experiencing, but there was very little real info to be found. Most sites didn’t even mention acne or hair loss in conjunction with ovarian cysts. If this one comment was legit, it was the first time I had heard anyone make that connection. And if it truly was a possibility, I knew it could be a player in the new pain in my lower left abdomen.

The doctor’s office was thankfully not very crowded. The only other person waiting was a fabulous looking 78 year old woman with thyroid cancer. She shook her head slowly, smiled, and told me, “These doctors just take your money and create new symptoms to keep you coming back. It’s all about making money.” Then she talked about the coming rapture and how she’s “seen it all coming” since she was a little girl in church. I steered the discussion towards politics and Obama, and we both agreed on how disappointed we had become in him. I mean, how DOES one deflect talk of the rapture in a doctor’s office waiting room? And I loved my doctor and didn’t agree that he just wanted my money.

In the meantime, I half sat/half reclined and felt nauseous. All of the pain was centralized in one location, but it affected my entire abdomen. All I really wanted to do was find a bed.

After they called me back and weighed me, I had the sudden urge to vomit. I ran to the bathroom and made it just in time. Since I hadn’t eaten anything all day, it wasn’t bad. But I still felt nauseous.

My doctor’s initial conclusion was that it was probably diverticulitis, only this time in the colon where most people have it. When I asked about the possibility of an ovarian cyst, he admitted that could also be the cause of the pain. By this time the pain was severe.

He recommended I check myself into the ER for a CT scan. He also thought my pain was bad enough that they would want to admit me into the hospital, but I had no intention of letting that happen.

hospital hallway

Diverticulitis is fairly common, but duodenal diverticulitis is not. The first time it appeared it caused a five day stay in the hospital. The head of surgery had no idea what the large mass on my duodenum was, only that it was a large mass and it was causing an infection. He didn’t want to operate because of its size and the possibility of bursting, but he knew that it wasn’t cancer. I stayed hooked up to an IV with all food and and liquids delivered intravenously for the entire five day stay. I had all kinds of GI tests run after the mass healed but no one could figure out exactly what “it” had been.

When it happened again last year, six years after the first time, the ER staff took another CT scan and compared it with the one from six years ago, which showed the lesion in exactly the same spot. A doctor young enough to be my daughter made an immediate diagnosis of duodenal diverticulitis, which is apparently rare enough to explain why no one figured it out the first time. I was sent home with a round of antibiotics and was up and running again within ten days.

So it was off to the emergency room again, just over a year since the last visit. My doctor is kind and caring, but I was embarrassed when he insisted on one of his nurses wheeling me out to the car in a wheelchair. I hate being fussed over and drawing attention to myself. I run marathons! I’m tough! I could do this on my own!

To be continued . . .