Week 6-7 Recovery: Reclaiming My Life

I continue to improve with each passing day.  It has been six weeks and five days since my surgery.  The past week I have been moving around more.  I walk at least 10,000 steps a day now.  I no longer needed the step stool to climb into the tall bed by last week.  I could accomplish more things in a day.  Alas, it has been easy to feel like I am drowning as I try to get back to my life.  One day last week, I was feeling lost and overwhelmed as I wasn't certain about where to start.  I am slowly figuring out the steps as I reclaim my life.  My life was full before I got diagnosed.  I was working full time and working on my doctorate degree.  I am ready to return to my academic life again.  I am ready to get back to my regular workouts. 

My six-week post-op appointment with Dr. Jewell was last Tuesday.  I thought it would be a short appointment.  Nope, we were there 11:30 AM until 6 PM.  After examining my incisions and vaginal cuff, she lifted all the restrictions.  Bath time!  I was able to lift Chocolate again!  Oh how I have missed that.  Food shopping on my own because I could start pushing carts again.  She said to start slowly with workouts and lifting things.  I had pain behind another incision that she discovered during the examination.  She ordered a CT scan to rule out hernia.  It has been ruled out.  I suppose the pain will come and go as I continue to heal.  I will be back in three months for a follow-up.  Dr. Jewell reminded me once again that I will not be completely healed for at least six months.  I will continue to feel aches here and there and I will continue to feel tired from time to time.  I have to be extra patient with myself as I want to rush into things again.  Tonight, I told my friend that it's about going day by day with this recovery process.

On Tuesday, we were in New York City and boarded our train home.  Our train was a bit delayed then it was not allowed to leave the station.  We had no idea what was going on.  We asked other passengers who also had no clue.  After waiting for an hour on the motionless train, we learned from friends that a northbound train had derailed in Philadelphia.  Amtrak was not sure about what they were going to do then they decided there will be no trains leaving that night.  We had several options on the table: go home somehow, stay with a friend, go to a hotel that has an agreement with the cancer center to offer special deals to patients.  Mike was stranded in Detroit the night before after missing his connection home due to a delayed flight.  I had the airline re-route him to New York to meet me.  But he had some misadventure in finding his way to the cancer center.  He landed at LaGuardia and then ended up in Bronx.  He walked through the Harlem into Manhattan.  He made it to the doctor appointment with three minutes to spare.  I had no toiletries nor a change of clothes.  We both were aching to get home.  We decided to take a local train to the Newark International Airport to get a rental car to drive home.  We didn't buy the local train tickets until I have booked the rental car.  I was confirmed by Budget with a rental car.  Then we were on our way.  At the Newark Airport, we had to ride three different trains to get to the car rental counter.  I was feeling exhausted and relived that we had gotten there.  Now it was time to pick up a car and go home.  Not quite.  The gal at Budget said they had no cars to give.  Mike and I were like... "Are we going to get home!?!"  I think Mike had it worse because he has been trying to get home for over 30 hours at that point.  We discover that Dollar was the only company that had cars available.  They quoted us a pricey one-way rental.  I told them there was a better deal online.  He suggested that we book online but it would mean about fifteen more minutes for the reservation to be processed.  Finally we got our TINY car and was on our merry way by 2 AM.  Of course, I got lost in the area and finally got on the New Jersey Turnpike.  We got my car from the Baltimore-Washington International Airport's Amtrak station and we finally got home at 6:15 AM Wednesday morning.  We were messed up the whole day.  The rough journey home felt like my wild ride with cancer.  When will this stop?  There were so much uncertainty until we landed into our bed Wednesday morning.  I was there before Mike and was fast asleep. 

The derailment in Philadelphia was a surreal reminder of how fragile life is.  I was on the same northbound route that morning and later that night, numerous lives were affected.  You really don't know what happens tomorrow.  Just make the best of today.  Tomorrow, your life may change forever.  It could be a tragedy like the derailment or it could be a disease like cancer.  A woman made a post on Facebook today that implies she wished she had cancer.  I think she's aching for attention but... seriously.   I do not want any MORE members in this so-called cancer club.  It sucks.  Stay out!  Don't even consider pledging!  Run away!  

Tuesday night's trip home was tough for me because I had been sleeping a lot for several weeks and was going through 25+ hours without sleep.  Since that night, I have not felt like myself.  It is my body's way of signalling to me I need to rest more.  Dang.  I am supposed to do this, do that.  Slow down, Naomi.  It did not help that I drove six hours today to Rochester to fulfill some existing commitments I had made before the surgery.  It is nice to be back in the Land of Lilacs though.  There is something healing about being around flowers.  The flowers in our front and back yards have been instrumental in my healing process.  I relished the crocuses, hyacinths, daffodils, tulips, and azaleas.  I took it upon myself to learn the names of the flowers and read about them.  I left home when peonies are starting to bloom.  I really hope I do not miss much of the process while I'm gone for a few days.  Roses will come next, I believe.  A friend told me last week that earthing is a healing energy.  And by connecting with flowers, I am healing.  

I close this post with a nice reading that someone sent me:

A small wave for your form

a small wave for your voice

a small wave for your speech

a small wave for your means

a small wave for your generosity

a small wave for your appetite

a small wave for your wealth

a small wave for your life.

a small wave for your health

Nine waves of grace upon you

waves of the Giver of Health

-Mhairi nic Neill

Week 3 Recovery: Post-Op Infection and Complications, Follow-Up Appointment, and My Stage

Week 3 came with no weird cravings but more of a general loss of appetite.  I think it had to do with the fact I returned to work and had so many fires to put out.  It was not a typical work week.  It has been a hectic week.  I am so thrilled that tomorrow is Friday!  Many women do not return to work until week 4 or after depending on the amount of physical activity required on the job.   Dr.  Jewell said I could return because it is a telecommute job.  I worked in my pajamas or sweats most of the week.  I did not work sitting at a desk.  I worked on the couch among many pillows and blankets to make me comfortable.  At the end of each day, I am mentally fatigued that I just want to watch TV or movies.  Nothing else.  The HysterSisters support group continues to be a godsend for me.  I love talking with them daily sharing stories about our recovery process. 

I am weaning off pain medications slowly.  I learned fast enough that it has to be a gradual process.  I tried to get off on Friday night and was in horrible pain that I couldn't even walk.  It took two hours for the pain medication to kick in.  A glass of red wine definitely helped too!  My last dose lasted for 16.5 hours.  The minute I feel stabbing pain, I take my next dose.  This is an improvement from starting with every 4 hours.  I am unable to drive until I have been off pain medication for 48 hours.  I crave for my independence now that Mike is really busy with work.  Returning to driving will be a challenge as it does require core strength.  I am truthfully scared about driving again even though I want to drive again. 

This week I am able to do more.  I can do light housework.  I can cook simple recipes.  It helps a lot to have the pots and pans put on the counter for me.  I can't chop yet so... my food processor comes in handy.  I can drink a bottle or cup without a straw.  I still can't tie my shoes so I've been wearing slip-on type of shoes.  My doctor reminded me at the follow-up appointment on Tuesday that I really need to rest a lot.  I can do more but I still need to rest for at least four more weeks.

While I can do more, some post-op infection and complications set me back a bit.  Sunday night, I had the chills.  It was a horrible night.  I was trying to fall asleep but it felt like I was freezing to death.  I wanted more blankets and numerous socks to warm up.  I had been struggling with urination.  It hurt more and more.  Last Tuesday, I got antibiotics and my urinary tract infection (UTI) is going away.  Finally.  UTI is very common for women who had hysterectomies.  Monday morning which was also my first day back to work, I developed a new type of pain near one incision that made it very difficult to move and made me cry several times that day.  At the follow-up appointment, my doctor said it is the fluid build-up behind an  incision which indicate too much activity on my part.  After a grueling day traveling to New York City and back, I was beyond exhausted.  Wednesday morning I woke up with similar type of pain near another incision.  I knew I had to rest more.  I have been resting on the couch and/ or the bed since then and I am improving slowly and surely.  If the fluid build-up worsens, I would need a CT scan and possibly have those drained.  I do not want anything further done so I have been more willing to take the rest I really need.

The follow-up appointment was hard because Dr. Jewell poked!  I have been feeling like my vagina is off-limits to anything and anyone!  It has been beaten up enough.  And she had to check to make sure I was healing.  I hated that moment.  It hurt but the good news, I am healing nicely.  The incisions on my abdomen are healing nicely as well.

I was curious to know one thing about the surgery.  I did not understand why I was out in the operating room by 9:15 AM and the surgery did not happen until 10:35 AM.  What happened between 9:15 and 10:35 AM?  She explained that they added more intravenous accesses in my body, inserted the catheter, breathing tube, and braced me to the table to prevent me from sliding down.  Here's an image of what it looks like: http://www.intechopen.com/source/html/6517/media/image3.png.

The pathology report was shared.  My cancer was stage 1.  The cancer was contained within the uterus.  The two lymph nodes that they removed did not have any trace of cancer.  I am cancer-free now.  It means I do not need chemotherapy or radiation.  Mike was overjoyed.  He said it meant that he can have me around much longer!  It was rather interesting to see I was not sharing the same emotion.  It was like, "Oh okay," for me.  I actually felt sad.  I am still processing the news.  Yes, it does feel good to say I'm cancer-free.  Yes my cancer was operable but... to get to that point came with a huge price, namely the loss of my fertility and most of my reproductive system.  I was especially relieved that I got to keep my ovaries.  I knew people were anxiously awaiting the news but I did not want to hear people saying things like yay, awesome, or great news because I did not feel that way.  I reached out to a cancer survivor friend yesterday and asked about the feeling I am having.  Her response was affirming for me: "A chunk of your life and body.  You will process for a long time but you will heal and find joy in the simple fact that you have a lot more wonderful things to do!"  I told Mike on Tuesday that I was feeling, "This cancer threw me on a wild roller coaster ride for the past few months and now that the ride is almost over, I really don't know where to start picking up the pieces of my life together."  I guess I will figure it out one step at a time.  And I have to be patient and kind with myself as I move forward.  I asked Dr. Jewell about the surveillance plan.  She would not discuss that with me in depth until the next appointment on May 12th.  She said that my focus right now should be on recovering from the surgery.  

Interestingly, Memorial Sloan Kettering Cancer Center found something from my CT scan done in January here in Maryland.  The radiologist here did not notice anything.  The CT scan images were sent on a CD to MSKCC and their radiologist noticed that there was a tumor in my right lung.  It's probably benign but I was advised by Dr. Jewell to see a pulmonary doctor to get it evaluated.  Two years ago, a doctor noticed that I had a tumor in my liver.  It has been under evaluation for two years.  I am due for a follow-up in May.  If it is still the same, then my liver surgeon will call it benign and I can just ignore it.  I have been told by some people that I am overcautious when it comes to my health.  It's better to err on the safe side than not.  If I had not followed up on the heavy bleeding and pelvic pains right away, I might have been in a worse shape with this endometrial cancer.  I think it is important to be proactive about your health.  If you notice anything odd, go and get it checked out, pretty please. 

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.

The Surgery: The Whole Process

This morning I got an email from HysterSisters reminding me of checkpoints to prepare for my surgery next week.  HysterSisters has been a great resource for me and I highly recommend their website for any woman who need this surgery.  I have been busy preparing for the surgery, making sure I had everything I needed at home to ensure comfortable recovery.  I have been cooking up a storm to stuff the freezer with meals as I will be unable to cook for a while.  That is one thing I will miss very much.  The past two months, cooking has been a therapeutic activity for me as I dealt with this cancer.  For most part, I am almost ready other than needing to cook a few more meals to freeze this week.  I am not emotionally or mentally ready.  It is a life-changing surgery and that terrifies me.  I also struggle with the idea I will be unable to do many normal activities for six to eight weeks.  I am a Type-A personality and always on the go.  Now I have to rest for that long.  I really do not like that idea but have come to accept that it is necessary to ensure a longer life. 

On Monday, March 30th, I will have a two-hour surgery called the da Vinci hysterectomy with sentinel lymph node resection.  Dr. Jewell will be removing my cervix, uterus, and Fallopian tubes laparoscopically assisted by a robotic system called the da Vinci system.  This is a minimally invasive surgery.  What's going to happen during the surgery?

First, they will fill my abdomen with carbon dioxide (an inert gas) to create a large space for the surgeon.   The gas applies pressure that compresses tissues.  As a result, I will experience minimal bleeding as compared to an open surgery.  The day before the surgery, I will be on a liquid, dairy-free diet to help clear my body for the gas that will fill up.  It is the gas that makes many women feel very uncomfortable after surgery. 

Next, she will make five incisions in my abdomen - the top two incisions are 10 mm wide and the bottom three 8 mm wide.  Traditionally, hysterectomies are done by cutting up the uterus into small pieces for removal through abdomen using a power morcellator.  However for women with uterine cancer, that must not be done.  They need the uterus in one piece for the pathologist to accurately stage the cancer.  Plus if the uterus was cut, there's the risk of the cancer cells being spread to another part of the body namely the vagina or the area where the uterus used to be.  This happened to a woman during her surgery:  http://www.nytimes.com/2014/04/18/health/fda-tells-doctors-to-stop-procedure-used-to-remove-uterine-fibroids.html?_r=0.

Cuts will be made to disconnect the tubes, uterus, and cervix through cutting and cauterizing.  Then she will carefully remove everything vaginally.  Next, she will do sentinel lymph node dissection.  At our last appointment, Dr. Jewell explained the latest research on lymphadenectomy.  In United States, the typical approach is to remove all of the regional lymph nodes near where the cancer was found.  In Europe, they remove only those that should be removed (sentinel lymph nodes).  Comparative studies were done and there is no difference in the cancer progression between those two approaches.  In order to reduce the risk of lymphedema which is usually the result of  removing too many lymph nodes, they will just remove some.  In order to figure out which ones to remove, insert blue radioactive dye into the pelvic area to look for lymph nodes that become stained with the color blue.  Those will then be removed.

The last step is to close the end of my vagina where the cervix once was, which will become my vaginal cuff.  The uterosacral ligaments are secured with the vaginal cuff.  The recovery of my vaginal cuff is very important.  Thus, that is why I cannot do many things for six to eight weeks to ensure full recovery, including lifting anything over six pounds or working out.  If I do not follow instructions, I run the risk of having another surgery to reconstruct the vaginal cuff.  They will use a mix of dissolvable stitches- some will dissolve in six weeks, while some will dissolve in six months.

If Dr. Jewell can see there's something wrong with my ovaries during the surgery, she will have to remove them.  We agree that the goal is to keep both or at least one ovary.  If I lose my ovaries, I have 50% overall higher risk of mortality, along with numerous health risks.  If she sees that it is too complicated to do the laparoscopy surgery, she will do an open surgery.  If all goes well, I will be in the hospital for one night and go home the next day.  If it ends up being an open surgery, I have to stay in the hospital for three to five days.  I will not be discharged from the hospital until I can urinate and can walk. 

The removed cervix, uterus, tubes, and lymph nodes will then be sent to the pathology to stage my cancer.  I will not know my stage until the follow-up appointment with Dr. Jewell on April 14th.  My post-op appointment is on May 12th to see if my vaginal cuff has recovered and to get the green light to resume all of my normal activities.

The first two weeks, I will be heavily medicated with pain medications.  I will be sleeping a lot.  But I am required to walk around a bit throughout the day.  During the third week, I can resume some normal activities again but it will be a struggle.  I have been learning a lot about the post-operation experience from other women through HysterSisters to help me prepare.  Many of them said that even a simple task of showering is so exhausting that one needs a nap after.  I will probably be napping a lot during the weeks 3 and 4.  Once Dr. Jewell gives me the green light to resume my normal activities, I will still feel tired often as my body slowly recover.  I probably will not feel completely like myself again for six to twelve months.  The way I see it, the megestrol (hormone therapy) prepared me for that because I am a lot more tired those days.

Speaking of which, I am thrilled that my last day of hormone therapy is tomorrow.  Usually, patients are advised to keep on taking megestrol until the day before surgery so it keeps the cancer at bay.  I told Dr. Jewell that I was going to run out of my month's supply of megestrol on Tuesday.  She told me not to get a refill and it's just five days without treatment.  I am happy to have a break in between treatments.

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!

Why New York City!!?!!

We went back to New York City on Wednesday night for the pelvic ultrasound and follow-up meeting with Dr. Jewell on Thursday.  The commute is exhausting.  The train is much faster and more expensive than the bus (about 2 hours 50 minutes each way).  We took the Megabus because it's cheaper.  BUT we were not comfortable.  The seats were awful.  It was a long 4.5-hour+ trip each way.  Plug outlets did not work.  Wi-Fi did not work.  But the trip is worthwhile because I have a wonderful oncologist.  The bus ride made us realize that the Megabus is not an option for post-op appointments since I will be in pain.  Comfort is very important at that time.  So we'll be doing Amtrak for both post-op appointments.  My credit card company is really happy right now.  Like I said in an earlier post, cancer is expensive.

Why New York City?  I have some friends who think that going up to New York City is not necessary and that I should go with a local oncologist.  People are entitled to their own opinions.  Nevertheless, I need to feel supported in my decision.  It sucks to know that I don't have that support from specific friends when they comment about how I should have the surgery locally and that the commute is a pain.  We know the commute sucks and time-consuming but it's all worthwhile for the right doctor and the care.  Memorial Sloan-Kettering Cancer Center (MSKCC) was described in one of my readings online as: "one of the most prestigious and advanced cancer research institutions in the entire world."

Back in 2002, I had a bad case of plantar fasciitis that I was not able to walk well.  My podiatrist said that we have reached the last resort - surgery.  Because that was what the insurance in United States would pay for.  Having the surgery would mean decreased mobility.  That was not acceptable for me because I am active.  I asked him if there were other options.  He said to me, "This is off the record but go to Canada.  They have this non-invasive treatment that really works."  Before that time, I used to wonder why people would travel great distances for medical treatments.  After this experience, I understood and supported traveling for optimal medical treatments.  I got my treatment in Canada and I am happy to say I can walk and work out without any pain or limping.  It was the best decision I made.  I knew after that experience that if I had to travel again for optimal medical care, I would.

We are part of a Facebook group for women with endometrial cancer.  I think Mike's the only male member that makes occasional comments! Go, Mike! :-)  A woman is moving from United Kingdom to Manhattan in a few weeks.  She noticed that I am getting care in NYC so she asked for a recommendation.  I recommended Dr. Jewell.  Mike made a follow-up comment.  I am copying and pasting his comment which was a great description of Dr. Jewell: "Dr. Jewell is kind, considerate, caring, extremely DETAILED and BRUTALLY HONEST. Easily the best decision that Naomi and I ever made during this process. We have walked out of her offices feeling more informed each time."

In my ongoing research about endometrial cancer, I came across information about how uterine/ endometrial cancer treatment is most deficient in many parts of United States.  The reason for this is probably due to lack of training of gynecologists to detect this type of cancer and lack of research and funding for uterine cancer.  MSKCC in 2013 published a groundbreaking study that from molecular standpoint, breast, ovarian and uterine cancers are all identical.  After this study, MSKCC went on record that same level of testing, treatment, and surveillance used for breast and ovarian cancers be used for uterine cancers. 

I remember reading on MD Anderson Cancer Center's website that they routinely tests women with uterine cancers for CA-125 (tumor markers of ovarian cancer).  Dr. Diaz-Montes did not include this test.  I had to ASK for it.  I learn from one of my support groups that they had to fight for this CHEAP blood test.  Dr. Jewell said that it was a good thing I got that test.  Dr. Diaz-Montes just wanted to jump to surgery and do no tests.  I insisted on tests.  She willingly did the hormone receptor test and the CT scan.  I asked for CA-125 test.  Dr. Jewell was not content with the information in my records.  She wanted to see the pathology slides and the CD images herself.  Plus, she wanted to do genetics test and pelvic ultrasound to get the full picture about my cancer.  

When Dr. Jewell was talking with us last Thursday, she noticed I was feeling emotional about the whole thing, she ASKED about that.  I explained my feelings.  She took the time to listen and try to connect with me by comforting me.  She sat with us for over an hour to discuss treatment options, plan of action, preparing for possible adjuvant therapy, follow-up care, and any questions we had.  She shared the latest research on lymph nodes and cancer.  This means the center uses an innovative way to detect cancer in lymph nodes and determine the ones to remove during surgery rather than removing them all at once.  She described how follow-up care once I am deemed cancer-free would involve tests that are not recommended by American Board of Obstetricians-Gynecologists.  She said that the center noticed that cancer do come back in some cases which makes those tests necessary as preventive care for life.  I left the appointment last Thursday knowing I trusted Dr. Jewell with my life.  I could not trust Dr. Diaz-Montes to do anything to me while I am under anesthesia.  Mike commented to me yesterday that he always felt Dr. Diaz-Montes was in a hurry to go which left us swimming in darkness and uncertainty with numerous unanswered questions.  I do not feel that way with Dr. Jewell.  She explains everything in great detail. 

Trust is key.  A relationship with your oncologist is key.  If it means traveling far away, so be it.  Look for a doctor with exemplary bedside manners.  Dr. Jewell is repeatedly recognized for her bedside manners.  Dr. Jewell was my third opinion.  I often like to say, "The third time is a lucky charm."  Dr. Jewell is my lucky charm.

Preparing Sign Language Interpreters

Yesterday, I role-played as a Deaf patient in a specific medical situation with a doctor and an interpreter.  This was part of a Medical Interpreting Immersion program offered by the CATIE (https://www2.stkate.edu/catie-center/medical-interpreting-immersion).  I got assigned to do breast cancer.  Ugh.  I really wanted to do something else... I just wanted to get AWAY from cancer for a bit-  give me diabetes, colonoscopy, or acid reflux.  The universe works in funny ways.  It turned out to be an educational experience for all.  I worked with five different groups.  Five different mock doctors and five different mock interpreters.  After roleplaying for about 15 minutes, we had 15 minutes to share feedback. 

I realized from this experience that finding an oncologist is just like finding a friend you are comfortable with.  There's that instantaneous connection. There are doctors who take the time to explain everything.  There are doctors who just don't.  We choose who we want to work with.  I felt connected with some mock doctors but not so with others.  This experience validated my feelings about why I couldn't fully connect with Dr. Diaz-Montes.  She's more clinical and wants to get rid of the cancer without looking me as a whole person.  Dr. Jewell does.  I have had to drag things out of Dr. Diaz-Montes.  I thrive on information.  I thrive on knowing what's going on in my body.  I WANT to understand this cancer and how I am going to fight this.  I loved mock doctors who explained in details about the breast cancer and treatment options.  Some patients may not want the level of detail I desire. 

As a mock Deaf patient, I found myself remembering my raw emotions at the initial oncologist appointments.  I reenacted those.  For some reason, it was like taking a step outside myself and seeing what I was feeling before.  I asked reactive questions that revealed my fear and uncertainty.  I talked about the importance of feeling like a woman when I learn that I may need to lose one breast.  A male doctor said, "I understand."  I reacted, "You don't understand! You're a man!"  After the mock situation was over, he walked out upset.  I learned from a participant that his wife died of breast cancer.  I remember thinking and wondering why he, as a mock doctor, knew so much about breast cancer and treatment.  Cancer is real.  It happens to too many people.  Too many, IMHO.

I also found myself asking the harder questions which was telling of my ongoing research about cancer and treatment.  I asked about whether I would need external or internal radiation for my breast cancer.  I found some interpreters did not understand this question.  I also learn that some did not know that there were different types of chemotherapy- intravenously, via port, or orally.  I encouraged them to research more so they are better prepared for oncology appointments.  One mock interpreter said she wanted to hug me but was not certain.  I said that interpreters who show empathy are the ones I respect.  Hugs are not expected as oncologists typically take the lead on the 'bedside manner'.  I have had oncologists hug me and it is a soothing feeling.  It is for me.  It may not work for other patients.  

One group asked about using the sign for treatment.  She did not want to use the signed English version (see video below):

The mock interpreter picked this sign (see video below): 

I said that two months ago, I would have been totally fine with this sign.  BUT now that I have cancer for real, I struggle with this sign (refer to this post: http://naomicancerjourney.blogspot.com/2015/03/cured-or-not.html). 

I suggested the alternative sign for treatment (see video below) because in reality, cancer patients ultimately decide what treatment option(s) they want to do. 

                                    

Thank you, CATIE, for this experience.  The universe knew the interpreters and I needed it.

What a First Appointment with an Oncologist Should Be Like

Despite the awkwardness because of the interpreting situation, Dr. Jewell showed me what a first appointment with an oncologist should be like.  She spent an hour with me which was much more time than the oncologists for my first and second opinion appointments.

First, she sat down very close to me.  She apologized about the center's failure to provide an effective interpreter and hoped it did not taint the beginning of a positive relationship we are going to have.  She then said she got my health history but wanted to know about me.  What do I do for a living... what general health history I have and what led me to meeting her.  She took detailed notes on her clipboard.  I looked over and there were a LOT of details in her notes and all handwritten.  She asked me questions and I answered.

She explained what endometrial cancer is and how it behaves.  She said it's a slow moving cancer.  Based on all the information she has seen so far, my cancer was caught very early. She wrote down on a blank paper and drew to describe grade 1. 

I told her I didn't have my period anymore.  She said that it's the megestrol and I probably won't get period again while taking the medication.  She explained why.  The megestrol gives my body the progesterone that it needs.  As a result, no period. 

She said that she wanted to examine me.  I was shocked by how thorough she was when she was examining me.  She took her time to feel everything and asked me if this hurts, that hurts.  I had no pain.  Dr. Diaz-Montes did not examine me like that.  The doctor issuing the second opinion did not even examine me at all. 

Dr. Jewell told me to get dressed and that we would talk more.  They typically move patients to a different room to talk.  But they decided to stay in the examination room because we had the FaceTime set up already.

After the examination, Dr. Jewell asked me what I wanted to do.  Did I want to be pregnant?  I told her that I wanted to weight all my options before I decide.  She said I could be pregnant.  The catch: I would need to stop taking megestrol when I am ready to try.  I have to have a dilation and curettage to make sure the cancer is not in the uterus before we try.  I asked about whether pregnancy hormones would accelerate the growth of cancer.  She said, "Not this cancer.  When you are pregnant, your progesterone levels are high.  High progesterone levels are good and prevents this cancer from coming back."  She said that I could take megesterol for as long as I want to and I could try for as long as I want to.  The catch, I have to be OFF megesterol when trying to get pregnant.  She said that route is not recommended.  I asked her when would be a good time to try thinking of Dr. Diaz-Montes saying I could try in May.  She said frankly, "Yesterday."  Mike asked about fertility specialists.  She said that fertility specialists would not work.  She said two options are ideal: surrogacy or adoption.  I needed to hear that frankness but it does make me sad.
 
She said that when I am ready, surgery is the best route.  She recommends removing the cervix, uterus, the fallopian tubes, and the pelvic lymph nodes.  However she said that because I caught it early enough, I should keep my ovaries.  The benefits of keeping my ovaries outweigh the risks of not keeping my ovaries.  However if I choose to get pregnant, we would have to re-evaluate whether keeping my ovaries is a viable option.  That gave me a sense of relief.  And this was the first time I felt a glimmer of hope since I found out I had cancer.  The way I see it... having the cancer shortened my life unless I did something about it.  But if I did something like going with Dr. Diaz-Montes for the full removal of everything, my life would still be shortened.  Losing ovaries means I am at a MUCH higher risk of heart disease and osteoporosis AND breast cancer.  Basically I'm screwed if I lose my ovaries.  I am tired of many people thinking ovaries are just egg stores.  I have been encountered with the attitude... what's the big deal?  Close down those egg stores.  Not so.  Women depend on the hormones that ovaries offer.  Why do you think you have never heard of men getting their balls cut off?  The support groups I am part of-- other women really encouraged me to see if I can fight to keep my ovaries.  Some women reported that their oncologists rushed them into surgery without giving them the time to research and learn the negative consequences of losing the ovaries.  I have been criticized for not being willing to be rushed into the surgery as if I was not willing to do anything about this cancer.  I am WILLING but I want to be well-informed and make the best decision that ensures the quality of my life.

BUT before I decide which route to take, she said she needed to do two more tests.  My chart was incomplete and left open for questions.  Dr. Diaz-Montes did not want to do many tests.  She just wanted to cut my reproductive system out of me.  I asked for the tests.  I had to fight to be tested for ovarian cancer too.  And I tested negative.  I didn't know there were more tests to be done.  Mike and I were impressed with Dr. Jewell.  She said that she may need to do a dilation and curettage because she wants to LOOK at the uterus to see how the cancer is behaving.  When she said that, Mike knew she was the right doctor. 

I asked her about the surgery.  She drew a picture of how the surgery would be done.  This was very helpful to me.  She discussed briefly about the surgery and what I need to know about what to do after.  She did not want to go into details yet because we need to do more tests before she can make a final recommendation.  But she willingly answered my questions about risks of the surgery with statistics for each type of risk.  She told me about two of her patients who kept their ovaries coming back with ovarian cancer.  She said it does happen and it is unexplainable but it was just two patients out of numerous she has seen over the years.  I asked if she had to remove my ovaries, would I get hormone replacement therapy.  She said, "Definitely yes until you are 50."  Dr. Diaz-Montes did not want me to get hormone replacement therapy.  Surgical menopause is no easy feat.

The final recommendation will be made when we go back up in two weeks after two more tests are done.  

New York City is not a place that I visit often. In fact, I detest crowds. New York City feels too busy for my own taste.  I purposefully avoid New York City as much as I can.  I have been only there three times before the appointment.  The first time, I went to the Macy's Thanksgiving Parade in 1997. I remember thinking that day as I fought the crowds, "I DO NOT LIKE NEW YORK CITY!"  I came back in 2002 because New York City was the only place I could take a test that was required in California. I was living in Rochester at that time.  It was a quick visit.  Third time was with my dear friend, Dan who wanted to fly from Rochester to New York City for the day.

On Thursday I realized that in order for me to have the most optimal cancer treatment, I would have to embrace New York City.  Okay, here goes.  I will be going there the next few months to get treated.  Dr. Jewell is the right oncologist for me.  She was the first oncologist that took me out of the darkness and uncertainty that I was swimming through.  She was sensitive to the distance we were traveling and asked if we wanted to go to Johns Hopkins.  We explained that it's not an option for us.  Dr. Diaz-Montes has too much influence in that area.  Traveling back and forth to New York City comes with expenses and that makes me nervous about finances.  But if it means saving my ovaries and preserving the quality of my life, it is worth the trip.  Onward.