Sliced Open

06/26/2013

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.

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.

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.

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.

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.

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!).

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.

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 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.

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.

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.

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.

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.

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.

It’s good to be back home again.

To be continued . . .

Written by Mind Margins Posted in Cancer Tagged with cancer, hospitals, incisions, mucinous adenocarcinoma, mucinous epithelial ovarian cancer, nurses, ovarian cancer, surgery