Achieving milestones then.... it's back in the operating room again

This coming Monday is going to be my surgery #3 in 2015.  Before that, I saw the inside of an operating room only a handful of times in my entire life.  Now, it's becoming too familiar.  Preparations... no eating/ drinking after midnight....  No vitamins....  No over-the-counter medications....  Make sure you have transportation afterwards...  Yada yada.  Agh.   This time it's a minor surgery.  BUT...  I'm really dreading it.  I am dreading the idea of going under the knife again.

The past few weeks I have been achieving great milestones in my recovery.  I was determined to climb to the summit of Mt. Cowles, the highest point in San Diego, when I was in town.  There was a heat wave going on.  I still HAD to do it to prove it to myself that I am still capable of doing physically challenging things even after a fight with cancer and recovering from a major surgery.  And I climbed to the top when it was 103 degrees.  Yay.  I finally won some racquetball games again.  I finally reached my regular routine of swimming a mile.  I finally went stand up paddleboarding again in Orange County two weeks ago.  I was able to do some physical labor as well.  I was on a roll with school and other parts of my life.  My energy level was better.  I was feeling really good about myself.  Yes, I was still struggling with the open wound that didn't seem to close.  It just keeps on draining.  When I was in San Diego, it started to bleed a bit too much.  I went to the urgent care.  I was hoping for a WHOLE month of not seeing a doctor in September.  That was broken when I went to the urgent care.  Dang.  

I saw a different specialist yesterday about my wound.  She said that the infection never went away. Sure, the worst part of it was managed by antibiotics but she said that antibiotics are not effective for this kind of infection.  The surface of the skin got staph which was treated with antibiotic ointment.  The infection is internal.  In order to allow the body to heal, they have to get inside to examine the infection to see its severity to determine the next steps.  I have no idea of what news I will be waking up to in the recovery room.  It could be that it was an easy fix-- meaning opening up the wound further to allow full drainage.  It could be a temporary fix requiring repair surgery later down the road.  I hate the feeling of going under not knowing.  Alas, months of this craziness made me agree to go for the surgery.  It has to stop somehow at some point.  My doctor said this is the first step.  She and I are hoping that it's also the last step.  She and I wouldn't know until Monday.  

The Surgery and the Beginning of Recovery

Back!  Just yesterday, I was able to hold my laptop on my lap for a while.  It's quite a core workout, did you know that?  Today I'm trying to type more and hoping I can do more today.  I am not the world's most patient person but this recovery has taught me a lot about patience.  I have to be patient with myself as I recover.  

The surgery injured my abdominal muscles.  On Monday, I told Mike it felt like I was a baby learning how to use my abdominal muscles all over again.  It was struggle to sit down on the toilet.  It was a struggle to get out of the bed to walk around the hospital floor.  It was a struggle to bring a spoon to my mouth.  A few days later, I am getting the hang of those basic activities. It will take time to rebuild my abdominal muscles.  Hence, the reason why they keep on telling me I had to take it easy for 6-8 weeks before trying my normal activities again.  I just sat in a chair for a full hour and I saw that as a positive step.  It was awesome because by sitting up, Mike gave me a manicure as a reward!  I can walk up and down the stairs in our house.  This morning was my first outing.  I had a bad case of cabin fever and wanted to get out.  We went to get some breakfast and it was a nice outing.  Mike commented that the thing with recovery... you should not do too much or do too little.  I am trying to figure out what the happy medium is. It'll take time each day.

I was happy to be able to disconnect from the world on Sunday night in preparation for the surgery.  I was drinking fluids like crazy because it was the only thing I could digest.  I went to bed feeling scared knowing that the time has run out.  I woke up Monday morning in an automatic mode.  Get myself cleansed with Hibiclens (surgical preparation solution that they told me to shower with).  Put on the outfit that I would leave the hospital in.  We walked out in upper east side of Manhattan as the city was waking up.  I was so happy it was snowing!  I was frustrated by the restaurants, cafes and bakeries emitting aromatic smells.  I was starved!!!  We arrived at the hospital a few minutes before 7 AM.  We were greeted by a nurse escort at the entrance who was waiting for us.  I saw the interpreter being approached by the staff Spanish interpreter.  Ugh.  We later learned that she was telling the interpreter that Mike and I are demanding.  Hmph.  If we ask for quality interpreting services, that makes us demanding?  No.  I did not appreciate that because it seemed like they keep on trying to scare the interpreters into thinking we are big, bad monsters.  I told Mike I did not want to see her nor the interpreter coordinator lurking around for the rest of my time in the hospital. 

We were escorted to sixth floor where I was admitted.  I asked which floor I will be staying overnight.  The nurse escort said 19th floor.  I remember thinking that it was far up in the building.  And the building was not that tall.  We were put in a private room for me to change into a hospital gown.  The interpreter commented that everyone were instructed to make sure we were treated as if we were VIPs.  I was puzzled by the nurse escort and the individualized attention but just went with it.  They were getting me prepared for the surgery.  I met with my anesthesiologist and his resident. And then Dr. Jewell and her resident.  I asked about how the sentinel lymph node removal would work if no lymph nodes turned blue/green after I was injected with a radioactive dye.  She said that they would go back to the traditional approach and use a chart to identify which lymph nodes to take out.  I remember hoping that some of them would turn blue / green because I did not want to have all of them taken out.

The wait was too long.  I did not get wheeled into the operating room until around 9:10 AM.  I checked in at 7 AM.  It did not do much good for my anxiety but... I stayed as optimistic as I could and kept on talking with Mike.  Then 9:10 AM came.  I was wheeled in with my interpreter who was put in scrubs.  I was impressed by how many operating rooms there were.  I asked how many there were in total... they said 21.  I asked if they were all full that morning.  "Yes."  A busy morning for sure.

I entered my operating room and remember feeling awed by how fancy it was.  It was the best operating room I have seen.  There were big TV monitors on the wall.  My vital information was listed on one of the TV monitors.  I saw that they had a time log.  9:10 AM: "PT enters OR", 9:15 AM: "PT transferred to surgical bed", 9:20 AM: "IV fluids given",  so forth.  I would have liked to see the entire log afterwards.  I was admittedly very spooked by how HUGE the daVinci robotic system was.  I was like, "Those arms are going inside me?!"  Ugh.  I was impressed by how Dr. Jewell took an active role in getting me comfortable and prepared in the operating room.  I am used to surgeons letting the residents and nurses do all the preparation.  The last thing I remember was asking what the second TV monitor was for... and then I slept.  The interpreter later asked if I remember the answer.  She told them that it looked like I was out of it because I was not responsive.  The second TV monitor was where they could see the video of the surgery in process.  The interpreter was taken out of the operating room after that.  The surgery began at 10:35 AM.  I wonder why it took them a long time to prepare me in the operating room.  I guess it'll remain a mystery.  I was out of the operating room at 12:35 PM.

I remember waking up to Mike telling the interpreter that he did not want to miss me waking up and had to be there for me.  I was tired.  I was annoyed that they left the catheter inside.  I told the nurse it had to go!  I was told they would take it out before I was out of the operating room.  I was waking up and the only thing I wanted was to get it OUT!  Then I wanted a cup of water!  The nurse said I had to wait.  Agh.  I finally got a small amount of water to see if I could keep it down.  I did!  And they gave me more water.  After my surgery on January 9th, I was across from a guy.  We started a competition to see who can fully wake up first.  It was fun.  On Monday, I saw a guy across from me.  I decided to start by smiling at him.  He was sad.  That made me sad.  It felt like a few minutes before they wheeled me to my room.  Mike told me I was in recovery about 2.5 hours and it felt like forever to him. Ha.  I waved to the guy before leaving but he was still sad.  I hope he's okay from his surgery.

In the elevator, I noticed that 19th floor was the TOP floor.  When I got off the elevator, I was surprised.  It felt like I had entered the penthouse of some sort NOT a hospital floor.  It was fancy.  There was a security officer monitoring each person entering the floor.  It felt like a posh hotel.  It was not white, nor clinical.  It was warm and inviting.  I was confused.  I thought it was Memorial Sloan-Kettering Cancer Center's typical hospital room.  I figured that I had come to the best.  I was put in Suite 1912.  No roommate.  Nice view of the east side of Manhattan and Roosevelt Island.  The suite was roomy with a couch.  I was wowed.  I later learned that this floor require advance reservations.  The security guard works until midnight.  If there are royalty or important people, the security guard works 24 hours.  The nurse technician, Gilbert, who gave me a tour the next morning apologized to me that I was not important enough to get a 24-hour security detail.  I told him I felt a princess being on this floor anyway.  Someone said that they were going to put me on 10th floor which looks just like a hospital room but it was full.  Advance reservations?  I think that was the hospital's way of apologizing for messing up in providing effective communication access services.  On that tour, Gilbert told me about how there are 14 suites on that floor.  That morning five were unoccupied.  Some of the suites are big enough to accompany 25 people as some royalties and dignitaries bring their own staff: security guards, nurses, etc.  Yikes.  I was glad to get a regular suite and had only Mike in it.  Mike made a video of the hospital floor and the suite: https://youtu.be/KASQGcNZtwk

Upon arrival, they immediately put electronic compression boots on me that keep on squeezing.  It was impossible to fall into deep sleep with those boots on.  They fed me a late lunch of soup, jello, and Italian ice.  I ate all of that except for the Italian ice.  Sugar was having weird effects on my tongue... must be the medications.  I loved eating the chocolate ice cream though and it did not have that effect.  They showed me where to get more if I wanted during the night.  I was ready to sleep but they kept on sending nurses and nurse technicians to check on me.  My friend, Judy, who lives in the city came to visit.  She had a hysterectomy a few years ago.  She was impressed that by 4:30 PM I already peed on my own, walked around a bit, and ate.  She visited briefly as I was really sleepy.  I never got to fall asleep because I kept on getting poked again and again.  Dr. Jewell came at around 6 PM to see how I was doing.  She said I looked really good.  She said that some lymph nodes turned blue/green and those were removed.  I asked how many.  She said that the pathologist will do a count of lymph nodes that were removed.  I asked if I'm stage 1, does it mean that I'm done?  She said, "Not necessarily."  Interestingly, Dr. Diaz-Montes said I'm done after the surgery.  Dr. Jewell refused to discuss "what ifs" with me at all.  She said we had to wait until the pathologist is done.  It usually takes 10 to 12 days for a pathologist to process all the removed parts: cervix, uterus, tubes, and lymph nodes.  I see her on April 14th to learn my stage and if I need any adjuvant treatment.  I really dread the wait but I have been busy focusing on getting better. 

I tried to eat dinner but found solids very challenging to eat so stuck with fluids.  The interpreter coordinator tried to see us that evening.  Mike told the interpreter to tell him no.  30 minutes later, he asked to speak with Mike outside the room.  Mike told the interpreter no... he was focusing on me.  I was annoyed that the interpreter coordinator was lurking.  He really had no business being there.  He provided the services.  He did his part.  Now let the medical team do their jobs.  He was insisting on getting information from the interpreters about my health.  The interpreters refused to give him any information.  He was getting frustrated with them.

They finally let me sleep from 1:50 AM til about 5 AM.  I ached for MORE sleep but decided that I would just wait until I get home to sleep.  Because I was able to walk around the floor several times and pee on my own several times, they discharged me at around 11 AM.  I was sad to leave that posh floor but... they never really let me sleep.  I was ready to go home!  Leaving Manhattan was painful!  Potholes, uneven streets, and unexpected stops.  Yeow!  We made a quick stop to get lunch to go at the Soup Man.  This is the spot that inspired the Soup Nazi on Seinfeld.  I enjoyed my lunch in the car but I wanted to get out of Manhattan.  Once we got on the highway, it was smooth sailing the rest of way.  We stopped at least once every hour for me to walk around to prevent blood clotting.  We were home by 5 PM.  I could not eat much.  I fell asleep pretty early and slept through the night.  The next two days I was sleeping a lot.  I felt like someone cast a sleeping spell on me.  On the third day, I was awake during the day time.  Today, though, I fell asleep for a two-hour nap.   I'm not a napper.  I need to allow myself to take naps when my body needs it. 

My pain comes and goes.  I have five incisions.  Four of them are sealed with Dermabond (superglue).  One bigger incision is the most painful and is sealed with steristrips.  This was where the robot's main arm operated.  It continues to hurt today.  Last night, I was laughing so hard at a sitcom.  It was a hilarious episode.  I am paying the price today.  I guess in my case, "Laughter is the best medicine" does not apply.  Chocolate punched me with his paws because he was uncomfortable in bed last night.  Ow.  I don't think Chocolate can sleep next to me for a while.  I am learning the right things to do to help manage the pain although the pain medication is awesome. :-)  It'll take time.  Onward.

Tomorrow's the Big Day... Farewell to my Uterus

We have been in New York City since last Friday. The pre-op tests and review were done on Friday.  I am physically fit for the surgery tomorrow. It has felt like the universe is screwing with me. The nurse practitioner who was sent to discuss pre-op preparations with me was pregnant and kept on rubbing her belly. Ouch.  We agree that MSKCC could be more sensitive and not assign pregnant staff to work with young women who have to get hysterectomy.

Yesterday we boarded the Staten Island Ferry to get a view of the Statue of Liberty only to be turned back to the terminal after a few minutes. We asked someone what was going on. A pregnant woman's water broke just as we left the terminal. I thought that was bizarre. Why am I surrounded by pregnant women all of a sudden?

It's hard to believe the big day is tomorrow.  I am not quite ready.  Logistically speaking I am ready. The house is set up for recovery. The freezer was stuffed full. I have my hospital backpack ready with important necessities.  Am I emotionally ready?  I'm not sure.  I have been keeping myself very busy with preparations and working long hours to finish up a couple of projects at work before being out for two weeks. And I finished at 1 AM last night.  Being busy helped take my mind off it.  I was becoming very aware of the day approaching yesterday because it was the last day I could eat solids. I certainly enjoyed the yummy food the Little Italy had to offer!  Today I am drinking clear liquids: water, hot tea, clear juices, broth. I am hungry! The sight and smell of food are driving me crazy.  I will get through today!  What has helped a lot is getting some money from a friend to help with travel costs from home to New York. We decided to use some money to get a hotel room at a very good deal.  It's a good place to be before my surgery to relax and lock myself away from all the smells of food.  It's a mile from the hospital.  My surgery is scheduled for 9 AM tomorrow morning.  I check in at 7 AM to be prepped. I told Mike I wanted to walk from the hotel to the hospital.  The walk itself would calm my nerves.  I am stressed out at this moment but am forcing myself to chill out this evening.  I will need to disconnect myself from Facebook and my phone until after the surgery so I don't get more nervous with all the well wishes coming my way.  And I will capitalize on my last baths for six to eight weeks by reading some magazines and watching a movie on my iPad while bathing.

I remember reading somewhere recently about how the oncologist and the patient have different mindsets.  The oncologist is focused on saving lives and surgeries like the one I will have tomorrow is a way to save my life.  It means a success story for the oncologist.  The patient does not focus on that 'success' but becomes concerned about how his/her own body will be different after the surgery.  That's what has been on my mind the past few weeks.  I spoke with women who had hysterectomy and they said that if I keep my ovaries, the change is more in the 'mind' rather than physical.  Let's hope I do not overthink this change because I need to quickly adapt to the life without my uterus, cervix, and tubes.

One thing that was recommended that I do before the surgery is to write a letter to my uterus.  I have been avoiding this until today.  This letter was written as my feelings came out.  There were no edits. 

Dear Uterus,

A month ago, I was really pissed off that you gave up and let the cancer cells take control.  You let the cancer line up in my endometrium.  Today, I actually feel sorry for you.  I feel sorry that you couldn't stay strong for me.  I am sad that you did not fight hard enough to ensure I could have a shot at being pregnant at least once.  But hey, thanks for giving me some warning signs that there was something wrong by making me go into pain and losing blood.  I just hope that the cancer was caught early enough.

You have been with me since I was born.  You were there when I got my first period when I was 12.  You surprised me when I was not ready to be a woman.  But I rolled with your timeline.  Some of the cramps you gave me were awful so I am not going to miss you for that part.  You scared me by not menstruating some months throughout the years.  I learned that I had other medical issues that just stopped you from functioning.  Now this cancer thing.  I knew that you have paid your dues and it is time for you to go. 

I hoped that the hormone therapy would have helped you get better.  The hormone therapy, unfortunately, did not make me feel good.  I stopped last Tuesday night, wondering what kind of effects that would have on you.  I was happy that the nosebleeds stopped the day after my last dosage.  Yesterday, I had spotting which tells me that the hormone therapy did not get rid of the cancer.  The spotting told me that the cancer acted up.  I felt sorry for your pain. 

Now I am almost 39 years old and it is time to say goodbye to you.  I am sorry you will be yanked out of my body and sent to a cold, clinical lab where a pathologist will examine you closely to determine how much damage the cancer has created.  This will tell me the stage of my cancer.  Then they will store you in a refrigerator for a while until they are satisfied that no further tests would be needed.  I guess you will be disposed of at that point.

For what it was worth, thank you for being a part of my life.  I bid thee farewell.

Naomi

The Type of Cancer That is Operable

The other day, my friend was telling me about her husband's esophageal cancer and how she was heartbroken when the doctor told them that his cancer was inoperable.  Some cancers are like that.  Some others are operable.  Mine is operable.  Yet it's not that simple.  It takes a lot of emotional courage to move forward with the operation. 

When we met with Dr. Jewell last Thursday, we discussed the test results to help us understand the cancer.  The cancer is clearly contained in the uterus.  And there have been no additional polyps or growth in the endometrium. That is positive.  But the uterus is not normal in shape.  Another positive thing was that it was not a genetic type.  This was just a confirmation of what I already knew.  There has been no history of cancer in my family on both sides.  This came as a surprise to everyone in my family.  Additionally, I have complex hyperplasia with atypia which is the worst type of abnormal thickening in the uterus.  Treatment of this type is usually hysterectomy.

Three treatment options were discussed on Thursday.  Hysterectomy, radiation, or hormone therapy.  I am currently on hormone therapy and I am not responding quite well.  I have been feeling really tired, thirsty, having nosebleeds from dry nose, and I just developed a weird rash.  If I opt to stay on hormone therapy for life, I run the risk of developing diabetes.  Not fun.  Radiation is another option but it is hard on the body.  Dr. Jewell said she would only consider radiation or hormone therapy instead of hysterectomy if I was not physically capable of handling surgery. 

It was clear at that point that surgery is the important step in treating my cancer.  It made me sad because it meant I cannot bear a child.  I have been processing this for a few weeks to reach acceptance.  This cancer took away the chance to have a child.  In order to try to be pregnant, I would have to forgo all treatments and run the risk of letting the cancer worsen.  If I go with radiation treatments, the radiation would damage my reproductive system.  If I go with hormone therapy, I cannot get pregnant because my body stops ovulating.

I am physically capable of handling surgery.  Surgery is the best route to take.  I do not want to get diabetic nor do I want to be burned with radioactive agents.  Yet, surgery terrifies me.  Dr. Jewell discussed the surgery in depth with us.  She discussed the risks.  One risk that made me sick to the stomach... she said that she has seen a few cases in which the uterus was removed only to find it had no traces of cancer.  And that the cancer was removed through dilation and curettage.  It is possible that my cancer was removed on January 9th when my polyps were removed.  We won't know until the uterus goes out.  That was one thing that I struggled with the most when I was reviewing the hysterectomy consent paperwork.  I still struggle with this fact today.  Mike said the other day that this was a decision that is based on what I knew.  I know I have cancer.  And I have the type of cancer that is operable.  It really sucks though.  Dr. Jewell said March 30th is the next available day for her to do the surgery.  I wanted to wait until end of May so I can plan accordingly.  I like to plan things ahead to make sure all my ducks are in row.  She said, "Absolutely not.  We need to operate as soon as possible."  Okay.  I guess I will have to make it work.  I signed the consent paperwork.  Then the nurse came in to discuss preparations with us.  There's a lot to be done. 

I left the center with a dark cloud looming above my head.  When we got to a place to eat for lunch, I burst into tears.  It was not an easy decision.  Yet it was a life-saving decision.  I got my diagnosis a few days before someone got her diagnosis of a different kind of cancer.  She died last week.  Another woman got her diagnosis a couple of weeks after mine for a different kind of cancer and her prognosis does not look good at this point.  I am in a better position or rather operable.  Once the uterus is out, they will stage the cancer.  If I'm stage 1, I am done.  If I'm stage 2-3, I will need adjuvant therapy.  Still, I am terrified of the surgery.  This whole thing SUCKS!