Diary of A wimpy Patient - March 2011

The following is a brief recount of my hospital stay after my delayed left DIEP (Deep Inferior Epigastric Perforator) flat reconstruction surgery.  I hope by sharing my experience, others might gain a sense of what it is like to have this type of operation and what to expect in the hospital.  I would also like to dedicate this to all who cared for me at the health center.

​Chien-Chi Huang is a middle-age Chinese American breast cancer survivor from Taiwan, who wishes to start a pilot project to empower the other Asian American breast cancer survivors with the skills and knowledge to do outreach and prevention work in their own communities.  She currently resides near Davis Square, Somerville, MA with her husband, two teenagers, a dog, and a cat.

Wednesday, March 2, 2011
My surgery lasted for nine hours.  This is quite common for a complicated operation like DIEP, in that the surgeon has to reconnect the blood vessels and utilize only the fat and skin from the abdomen. A refined version of the TRAM flap, DIEP preserves the rectus abdomen muscle(s) thus allowing for preservation of abdominal strength and integrity.
 
As I awoke to the voice of my husband Michael, I felt the stiffness and on/off pinching pains in my torso.  To someone who went through kidney stones, childbirth and a mastectomy, the tolerance of pains was not something I hope to gain, but something I earned.  My right arm was hooked up to an IV machine and I felt the leg massagers working hard to prevent me from having any blood clots.  A heated air-mattress-like blanket (picture a sheet of giant packing bubble wrap) covered me and kept me extra warm.  My invention-prone husband immediately liked what he saw and wondered if we could get one for home.
 
The nurse said I would be spending the night and most of the next day in the recovery room until my status stabilized.  I felt a cut on my bumpy upper right lip and Michael said it was probably from the breathing tube.  He did not argue much with me much when I suggested that he go home.  I dozed off for a while and had vivid images and ideas for a fabulous media campaign.  As the night went on, different nurses came by to wet my mouth, put Vaseline on my lips and take my vital signs.  I was sweaty, itchy, and parched.  To distract myself from the discomfort, I thought of a catchy slogan: the ability to stroke your own hair, scratch your own nose, and wet your own lips: PRICELESS!  As I was lying there, I thought I could really relate to how Jesus felt hanging on the cross when the Roman soldiers wet his mouth with a branch soaked with vinegar. 
 
I did not know if it was the medication or not, but my imagination seemed to be at its peak with vivid imageries and campaign ideas.  I even pictured myself and the other patients in the recovery room as the robots in the “Iron Man” movie being suited up, as our leg massagers synchronized in a funny mechanical harmony.  To retain my vision, I called for the nurse and asked her to write down few key words on a piece of paper so I could remember later what I was thinking. 
 
In the meantime, my belly was as active as my mind.  However, I could not tell if the bursting feeling was coming from my bladder or my incisions.  My abdomen was hard as a rock and my right hand was puffy.  I asked the nurse to check on all the instruments that were connected to me and I figured my urine catheter was blocked somehow. 
As she walked away to empty my urine collection, I heard her mumbled to the others: “Her right hand does seem to be bigger.”  Believe me, no one would not want to be in my situation with the IV continuously pumping in liquid and not being able to relieve myself.  In addition, the squeezes came from the leg massagers really pushed my pain tolerance limit. 
 
I kept asking the nurse to check on me and finally she had enough: “I will ask the doctor to give you something – YOU need to go to sleep.”  “I’m not tired,” I protested.  I thought I had better behave myself, otherwise, I might not know how I die.  After the nurse emptied out 400 cc of urine, I was more relaxed and settled down.  In the dim green light, the two nurses sat across each other, monitoring all the instruments and engaged in their mounds of paperwork. 
 
Thursday, March 3, 2011
The interns showed up early around 6am.  They were courteous, but I did not want to waste an opportunity to groom future “Doctors with empathy.” I gave them my spiel about how important it was to see the patient as a person first, not just a teaching subject or some numbers.  I reminded them that they are in the business to making people feel good, not just treating the symptoms. 
 
They seemed to take my “opportune education” quite well.  I generously exposed myself in front of four young guys.  I let them examine my wounds and use a pen-like instrument to listen to the blood flow in my chest near the drainage tube.  I noticed a blinking red light taped under my new boob connected to a blue boxy machine (Vioptix) by the bed, which was how they could monitor the oxygen level of the breast tissue.  I thought to myself now I really felt and looked like the “Iron Man.”  The interns also pointed out that the ugly looking worm-like thing across my abdomen was a blister, and that I had another one like that under my new boob.  They assured me that everything looked good and that I should let them know if I need more pain medication.  I told them I felt nausea at times, and they said it might be the pain medication at work and that I should avoid heavy food.  They also told me the goal of the day was to get me off the bed and sitting on a chair for a while.  I gladly accepted the challenge and determined to be the best that I could be.  Since I was hooked up to two machines and strapped with another pair of devices on my legs, I really depended on the nurses to take care of me.  I wondered if there were mystery shoppers checking on the performance of the nursing staff, and I was amused to think that I could be the one on an extreme mission. 
 
Out of boredom, I developed a grading system to judge if the nurse was up to par:  there are the blob droppers, the rough wipers and the lipstick appliers.  The first type of nurse would drop big blob of Vaseline on you and leave you there.  The second type would put the blob on you and then wipe you off roughly.  The third type of nurse would apply the ointment carefully and dab off the extra gently without you even asking.  Later I learned that most of the staff in the recovery room were recruited from the Intensive Care Unit or the ER. That explained a lot to me: they probably were more used to working with unconscious or badly wounded patients who could not articulate their pain.
 
Dr. M, a regal-looking medical Fellow from Nigeria whom I met briefly before my surgery also came to see me.  I was pleased to see some diversity among the doctors.
 
As I was entertaining myself with the notion of my marvelous nurse-grading system, Dr. T, my surgeon, came to see me.  He quickly examined me and while he was reading my chart, I told him about my experience in the recovery room the previous night and suggested that the hospital make it a protocol to check on patients’ hands.  I also told him that I was not very comfortable with the idea that the nurse were trying to shut me up with sleeping pills.  To me, patients know their own body best, and in medicine, just like any other industry, you should always pay close attention to what your customers have to say.  I do not know if Dr. T had done anything, but the nurses who attended to me after Dr. T’s visit were significantly more attentive and responsive than the evening shift.

The nurse told me that I would be taken to my room in my original bed from the recovery room.  Her announcement totally ruined my wishful thinking of finding beautifully wrapped chocolates under my pillow.  Nonetheless, I enjoyed my ride up to the 6th floor.  As the transporter parked my bed, I immediately adjusted my bed into a “check” position so the bed would cradle my bottom and support my legs at the same time.  Two nurses came to greet me.  One appeared to be a trainer and the other a trainee.  The trainer nurse told me to keep the back of the bed at 45 degree and advised me to walk like a “C” to minimize any unnecessary stretching and extending of my middle part.  She made sure I was all set in my room and wrote on the whiteboard with the information of who were on duty that day.  I thought it was a real nice touch.  The nurse also assured me that the private room was deemed “medically necessary” and it would be covered under my insurance.  Hearing this made me especially happy!
 
Someone handed me a menu and I immediately took action.  I must confess that I took more pleasure in ordering the food than consuming the food.  The nurse also handed me the remote control for the TV and the call signals.  I was delighted to find three Chinese channels, but I could not go to a certain channel without clicking through all the channels, and I could not turn off the TV without doing the same thing.  This was all quite annoying.  In addition, the designer of this device should have separated the call button and the TV channel button a lot more to avoid the misdials, which I managed to do a few times in the following days. 

I received my medications from the nurse, and she also gave me a shot of Heparin to prevent any blood clots. I also got antibiotics (Cefazolin) through an IV and as pills. I felt nausea from time to time because of most of the medication I received had this side effect; this is no fun when you have incisions in your tummy.  In addition, I had unusual bruising and bled profusely when I got the Heparin shot because of Celphalexin. Another daily medication I received was aspirin, which prevented heart attacks, strokes and relieved pains and fevers. Stool softner (Colace) came in handy because I was constipated and feeling bloated all the time with everything in my belly.  I was not feeling hungry most of the day, but I knew I needed to eat to regain my strength.  Therefore, I ordered chicken broth, glazed Teriyaki Salmon and green beans and broccoli on the side, and cranberry juice to help keep me hydrated.

With the help with the PCT (Patient Care Technicians), I managed to sit on the recliner for a while with the boxy blue box connected to me.  The PCTs came several times a day to check on my vital signs (taking temperature, blood pressure, and they put that cloth-pin like thing on your finger to make you felt like ET).  They attended to my needs while the nurses were busy.  Most of them (nurses and PCTs) work 12-hour shift so there is usually the day shift and the night shift. I liked to strike up conversations with them and I found I received better care if I took the time to get to know them a bit better on a personal level.  Even so, nursing is such a demanding profession and it takes a special person be a good nurturer!
 
Michael came to see me after work.  I knew he would love to climb on my bed and cuddle me but with five pillows around me, there just wasn’t any room, and he would not want to hurt me while the three drainage pouches were hanging from my body.  We held hands for a while then I convinced him to go home and rest.
 
Friday, March 4, 2011
The interns came in to check on me bright and early again.  They said my incisions looked good, and that I should not be worrying about the position of my new breast because it was still quite swollen. They told me the goal of the day was to have me showered and to walk three times if possible. 
 
I was looking forward to showering because the room temperature was set at 78 degree to prevent infections and blood clots.  My sweaty hospital gown and the pillowcase smelled like garlic and I happily accepted the offer. 
 
The nurse removed my urine catheter and helped disrobe me in the bathroom.  While the PCT went to get the supplies, I took a good look at myself in the mirror for the very first time: on my left chest was a mound of flesh with a Frankenstein-looking incision mark.  I could feel the blister under it – tender and watery.  I looked down and saw the bottom of my belly all bruised with a darkened edge and tiny sutures.  About two inches below was the “hip to hip” incision mark with a big blister in the middle.  I could still see the purple marks my surgeon drew on my right breast and under my neck.  Some bloody-looking flakes came off as I gently rubbed along the edge of the incisions.  I thought I looked like a stitched-up doll with ragged hair and drainage pouches sticking out from my sides.  If I had the talent of Frida Kahlo, I would do a post-surgery self-portrait for sure to capture my physical and mental state at that moment: I felt like the victim of a violent crime and that looking at my body reminded me of the traumatic experience.
 
The PCT knocked on the door and brought me back from my reflection.  I shuffled to open the door like an old hag.  She helped me sat down on the white plastic chair in the shower and turned on the water.  I put the drainage pouches on the bar at either side of the shower wall and she gently pumped the cleansing gel onto a hand towel for me.  I stayed in the shower and let the hot water rinse and message my weary body for a while. Then the PCT helped dry me with several towels.  I realized the underwear I brought from home would not work with my new “bikini line” so I asked for the mashed ones from the hospital.

After my shower, I decided to try for the other goal.  An occupational therapist came and walked with me.  I pushed my boxy blue machine with me while I went for my walk.  Unfortunately, the machine beeped frequently, and I had to plug it in when that happened.  I jokingly said to the folks at the nursing station that I outlasted the machine and that I was like an energizer bunny. 
 
In late afternoon, my in-laws came with Michael and my daughter. They brought me a lovely plant with fuchsia petals and heart-shaped green leaves.  After they left, I enjoyed my dinner and then dozed off while channel surfing. 
 
It was annoying sometimes when the nursing staff came in and wanted to check on me.  However, this was far better than nobody tending to you.  I woke up to a man’s voice calling out for help.  I looked at the cloak on the wall: it was 3:30am.  The man kept calling for awhile but nobody answered.  I thought perhaps he could not reach his remote control so I pushed my call button, hoping that someone might respond.  Finally, after 15 minutes or so, someone came to see him, but no one answered MY call.
 
This incident prompted me to push my call button well ahead of time.  Usually after a minute or so, someone would respond and check to see what the situation was, then the person would send for the PCT or nurse depending on their availability and your need.  Most of the time, I just need someone to unhook the IVs and the boxy blue machine so I could go to the bathroom, to have someone adjust my IVs when they beeped, to help me get back in bed. 
 
It took some practice to manage the art form of getting in bed.  First, I would remove all the pillows and sit down as far as I could.  The helper would then hold up my legs and swing them onto the bed.  Depending on how far I could get in the bed, sometimes I would need further help to move my body closer to the center of the bed.  After that, the helper would prop me up with a pillow behind me, two pillows under my arms, and another one or two under my legs, and reconnect the monitor and the IV to me.
 
Because the pouches were pinned to my hospital gown, I had to be careful not to sit down on them or laid on them.  Once I accidently popped open the drainage pouch lid and made a little mess on my gown and the blanket.
 
The drainage pouches were shaped like turkey basters with long transparent tubes.  The nurse came two to three times a day to empty the pouches, record and monitor the fluid collection.  One very competent and skilled nurse showed me the “alcohol swab” trick to effectively “milk” or “strip” the tubes, and I thought that was the coolest thing I had seen during my stay!  I noticed that the great nurses were all very motivated and attentive – there is no doubt they played a crucial part in mine—and other patients’—recovery.
 
Saturday, March 5, 2011
The interns came and examined me as usual.  They said I could go home as early as Sunday, but that I should stay until I was ready.  I felt a big rock off my shoulder.
My nausea level had decreased, and I only experienced the pinching pains occasionally.
The nurse on duty suggested I replace my current IV input with another one.  I reluctantly agreed because either way I would suffer.  Someone once poked seven times before the successful final attempt, but the worst time was when people started digging under my skin, hoping to locate my “elusive” small vein. 
 
I decided to go for my walk and get my circulation going.  At this point, I could get out of bed without any assistance.  I unplugged the boxy blue monitor and used it as a walker device. 
 
I enjoyed people watching while I was on my walk:  I saw a perky nurse with matching beret and uniform walking back and forth, a nurse that looked like the hot chick from Austin Powers’ movie with a curly hairdo, and one who always hid in the corner cubical playing solitaire.  Sometimes a nurse would join me and I would share my observations or a few jokes with my walking companion. 
 
Later that evening, my son came with my husband to visit me.  He gave me three of his latest pieces of artwork: a dragon-looking creature; a siren (he knew I like I mermaids better but it was not cool to draw them); and a battle.  He also decorated the daily duty white board with a monster.  It is a good thing that people can vent their fears and discomfort through art and other media.  The idea of documenting my stay in the hospital further crystallized at this point.
 
Sunday, March 6, 2011
The interns came and did the usual “stop, open and check.” I told them I would like to see if I could climb the stairs and use it as an indicator for my discharge.  They said they would check with the surgeon and let me know if I could stay until Monday morning.
 
I had another shower with some assistance from the nurse.  The entire floor seemed to be quieter than usual.  I decided to go for a walk. I saw a nurse punching codes to retrieve pills from a safe-like cabinet and I jokingly said to her that it reminded me of a vault.  I was thankful that my boxy blue monitor did not beep the entire time to cause any public nuance.  I asked my nurse if she could unhook me from the machine so I could try climb the stairs up and down.  I also got the word that my discharge was scheduled for the next day.
 
Later my nurse came free me from all attachments and accompanied me to the stair-climbing test.  I moved slowly but surely.  I noticed it was significantly harder to step down then to walk up.  However, I felt better knowing I could get to my bedroom on the second floor in case Michael could not arrange for me to stay on the first floor in time.  I knew he was shopping for an adjustable bed like the one in the hospital, and I wondered what we were going to do with it after my recovery.  I thought this might be another brilliant business idea: renting hospital beds.
 
The night shift nurse was thoughtful enough to coordinate the visits with the PCT so I could rest and sleep for up to five hours uninterrupted.  With pillows all around me, I felt like lying on the clouds and soon drifted off to the unknown abyss.

Monday, March 7, 2011
The interns came and congratulated me on my speedy recovery.  One of them trimmed off the sutures and told me that someone would come later to take care of the paperwork.  I phoned my in-laws to confirm that they would be able to take me home. 
 
The nurse disconnected me from all equipment, and I had my last shower with minimum assistance from the PCT.  She applied the Bactroban cream on my blisters, along the incisions on my abdomen, and on my left breast to prevent infections.  Some people might not understand why I went through so much trouble to have my breast reconstructed.  It was definitely not for everyone, but I knew that no prosthesis could make me feel more complete and cancer-free.
 
The doctor’s office gave me a post-surgery outfit at the pre-admission appointment.  All patients receive one for free and the hospital recycles it afterwards.  It was a very nice idea and other people probably did benefit from the program.  However, the black cotton top looked very big on me and I was not too crazy about the design.  Instead, I put on my soft, pink, stain-proof designer’s outfit and that made me feel really good.  
 
My in-laws arrived on time.  The nurse briefly went over the information in the Discharge package with me and I signed and dated the documents.  Jokingly, I said I was ready to go as soon as I received my farewell gift basket. 
 
As I sat on the bed waiting, I noticed a navy blue poster on the wall with the following words in white:
 
We promise: 

• To see you every hour
• To attend to your bathroom and hygiene need
• To ask about your pain
• To keep the call bell and telephone within your reach

 
I thought if I were the secret shopper, this could serve as an evaluation guideline.  After all, what matters most to patients are little things like: Did the interns cover up a patient after they did the examination? Did anyone empty the urine collector in the bathroom? Did the nurse rinse off the drainage collection jars on a regular basis?  The best motto for guiding performance might be: “Do to others as you want done to you.”  The same for the patients – if you treat the others as a person first, not a worker or a server, you would receive a better care.
 
The nurse came back with my “sendoff care brown bag.”  I felt well enough to decline the wheelchair offer but learned that it was the hospital’s discharge policy, in case anyone fainted or had another incident on the way home. 
 
I settled into the wheelchair with my belongings.  I felt like the Queen of England without the white gloves.  As I passed by the people at the nursing station, I smiled and thanked them in my heart for the care and attention they gave me.
​
P.S. I did not take notes while I was in the hospital so the sequence of certain events might not be 100 percent accurate.  However, everything I mentioned above, did and actually happened in my head and in reality J
 
Chien-Chi Huang is a middle-age Chinese American breast cancer survivor from Taiwan, who wishes to start a pilot project to empower the other Asian American breast cancer survivors with the skills and knowledge to do outreach and prevention work in their own communities.  She currently resides near Davis Square, Somerville, MA with her husband, two teenagers, a dog, and a cat.