Breath… Namaste.

A brief update before I move on to the topic of this post.  My doctors told me at the end of last month that I could go and live my life again.  The year full of doctors, pokes, surgeries, and drugs was over.  Essentially, I am free again.  I love the feeling knowing that I do not have any doctor appointments on my calendar except for the follow-up check each three months.  The next one is in February.  I have been living my life as much as I could the past few weeks.  I went back to advanced yoga classes and am loving them.  It will take some time for me to return to the level I am used to but love the feeling of being challenged in those classes and leaving feeling connected to the muscles that have been out of “business” for months.  I worked with my favorite chiropractor  who straightened my posture from sitting the wrong way for months.  I am able to sit normally again and I feel great.   I love the feeling that I could leave the country without worrying about whether I could get immediate medical attention.  My friends and I went to Mexico this past weekend and it was pure bliss.

 

Since this is the season of giving, I wanted to share a story about giving.  A dear friend of mine went to the Eff Cancer party for me last March.  One of the most touching gifts she gave me was a bracelet with the word “Breath”.  She explained that she got this bracelet when she was dealing with a surgery to remove a huge tumor from her uterus.  She wore this bracelet for the entire duration of her recovery.  She decided that it was time for her to pass the bracelet on.  She gave it to me for me for the next steps in the cancer treatment.  I got the bracelet around the time I was pretty sure I will have to proceed with the hysterectomy.  I wore it faithfully for a few months.  There have been moments where I was in extreme pain or struggling with my recovery, I would look at the bracelet and try to breath to calm down.  Someone, knowing the story,  asked when I would stop wearing it.  I was determined to keep wearing it until I am given the clean bill of health.  And I just got that last month.  No cancer, no infection, no hole, and no more  problems.  I remember feeling content when I took it off and put the bracelet in a small box.  The bracelet will go to the next woman who is dealing with major gynecological issues.  I am waiting for the universe to make it possible for me to cross paths with that woman. 

Last week, another dear friend gave me a new bracelet that says “Namaste,” wishing me a peaceful 2016.  2015 was one rough ride for sure.  Someone recently said that I lost a year in my life.  Sure there were many things I wanted to do but couldn’t.  Nonetheless, I gained so much from 2015.  I gained new insights and connections.  I am looking forward to seeing what is in store for me in 2016. 

Don’t forget to breath when you are being challenged mentally, physically, or spiritually.  Breath so you can take the next step forward.  Namaste.

A Full Circle

November 17th was my second three-month follow-up with Dr. Jewell in New York City.  It was a great visit.  I avoided the subway and walked all over the midtown/ uptown areas the whole day.  I feel the subway takes away the chance to see the city.  I had a blast racing to beat the predicted amount of time it takes to get from A to B according to the map app on my phone.  And I succeeded each time.  I was able to switch to the "New York speed walking mode" easily.  I was able to explore the city a bit.  Each of the past visit was focused on the medical visits that that by the time I was done with the visit, the day was over and it was time to catch the train back home.  An interpreter I met a year ago told me about taking the tram to the Roosevelt Island.  I had been aching to go but kept on missing it on each trip.  This time, I was able to make it happen!  I am including some photos from the Roosevelt Island adventure.

The tram!

View of downtown Manhattan

 This billboard was clearly visible on the tram ride returning to Manhattan from the Roosevelt Island.  "More science, more fear."  Cancer will always be scary, no matter what science says. 

The MSKCC's main hospital. I stayed on the top floor! Penthouse.  Last August when I saw this hospital again, I cried so hard.  This time, I felt different.  It was just like this place has a part of my history that I have come to terms with. 

The universe played some weird jokes on me this past year.  I have always dreaded pap smears. Now I have to do them four times a year for two years then twice a year for the next two years and then finally it's once a year for rest of my life to ensure the cancer doesn't come back.  I thought that I was done with period but still needed pads for my infection wound and surgery #3 recovery!  Now I am finished with pads for good.  I had just accepted that I couldn't bear a child of my own then surgery #3 recovery involved not using the toilet paper but baby wipes.  I had to carry around baby wipes for six weeks.  I was frustrated at first but towards the end, I actually found it very amusing.  I was happy to donate the remaining baby wipes I had left to someone who has a baby who actually needs them more than I do.

The upside of the pap smear this time around was that it did not hurt at all.  The first one in August hurt really bad that it was hard to walk afterwards.  I was hurting the rest of the day.  This time, it didn't hurt.  It was quick and painless.  That was reassuring for me to see that I was feeling much better.  Results came sooner this time.  On November 17th, I made a comment to my social worker about how it took a while before I got the August results.  She said she would follow up with the medical team.  I got results two weeks later.  Still in remission.  All good.

The "swelly belly" has subsided which enables me to do more in the abdominal area.  Last Wednesday, I taught a yoga workshop and I felt so great being able to do yoga with my students.  Last April, I taught a yoga workshop three weeks after the surgery and I could not do much as well as being in a lot of pain.  I had someone demonstrate the poses for me.  I was thrilled I could do the demonstrations this time around.

This past week, I did a lot of physical activity around the house... cleaning up and lifting heavy stuff. I did all on my own and it was nice.  Some friends offered to help during the weeknights but I just wanted to see if I could do it.  I had this strength before this whole rodeo with cancer and the infection.  Yep. I still have that strength although I am out of shape.  I feel great, yet exhausted.  Maybe a massage would be nice.  I look forward to seeing a chiropractor to correct my posture since I learned to sit in a strange position to avoid irritating the infectious wound and later the "hole," which is somewhat an afterthought now.

A Post of Gratitude

I am grateful.  I truly am.

Yesterday I saw my surgeon for six-week follow-up.  She was grinning from ear to ear letting me know the wound has fully closed.  Impressive.  Even though she did not leave me with instructions on what I should do to take care of the wound, she just said, "6-12 weeks to recover."  I consulted with others who had the similar experience to get information on what worked and did not.  I religiously followed the recommended regimen of care for six weeks.  Some days, I was annoyed.  It took more time out of my daily routine to maintain care.  On the six-week mark, my wound was closed.  No infection.  Gone forever.   The surgeon clapped and grinned as if I did exemplary work. She said it would be tender for a few more weeks.  I can feel some tenderness here and there but overall this is the best I have ever felt since before my surgery #2 back in March.  I am currently battling a bad case of bronchitis and am back on medications (sucky) to help me breath and I am exhausted but... I look forward to recovering from that so I can stand tall and recognize how I great I feel.

On November 3rd, I celebrated seven years I have been with my company, Network Interpreting Service.  I am grateful that the team has been supportive and flexible as I work my way through my recovery.  If I am unable to work full days, I caught up during the weekends.  I took time off.  I took breaks during the day if I needed to.  I am grateful for that flexibility and am ready to return to a more stable work schedule.  I am grateful that my team still treats me the same.  If they need me to do something immediately, they tell me up front.  If they want to joke about something, they pick on me.  They do check in to see how I am doing from time to time.

I am grateful to my dissertation committee chairs who have been optimistic as I struggled to get some productive results in my dissertation proposal writing.  I look forward to returning to my nerddom with the same level of energy and enthusiasm I had before this whole year.  One of the chairs was in a bad car accident last week and is hospitalized.  My heart aches for him and know what it feels like to be thrown off the track.  I wish him speedy recovery so he can continue to be my cheerleader and mentor.

I lost a lot this year but I also gained a lot.  I am grateful for my amazing support system who let me lean on them as I worked my way through anger, pain, and fear.

Lastly, I am grateful for the valuable lessons this past year has given me.

A Much Needed Getaway

I had been aching the whole year to just get away from it all… work, school, and medical stuff.   I initially wanted to visit my favorite place in Mexico—San Miguel de Allende but with my open wound, I knew that it would be hard to leave the country especially if I needed immediate medical attention.  It has been unpredictable with the infection.  What was similar to San Miguel de Allende is another favorite place—Santa Fe, New Mexico where there are urgent care centers that I could go to if I needed to.  I made it happen despite some obstacles.

April Carver, the main character of the TV series, Chasing Life, learned in her ongoing battle with Leukemia that traveling is soothing for her soul.  She managed to get away to a tropical destination.  And then she went to Italy.  The need to get away was nourishing for her just like it was for me.

I wanted to do it before the year ended.  My company gives me a bank of time-off days.  Those could be used for sick leave or vacation.  They are mine to use up.  Up until this year, I have been religiously saving those days for vacations.  I had the luxury of showing up to work with a bad cold because I worked remotely in the comforts of my pajamas and on my laptop, sometime in my bed even!  This year, I ended up using a lot of those days for medical leave (surgeries and recovery, visits to oncologists, tests, etc, etc.)   Just seeing my own time-off report for this year was like a stab to the heart.  I haven’t had a chance to play nor relax!

One of the biggest obstacles was the surgery I had two weeks ago.  I woke up in the recovery room in extreme pain.  I was wondering to myself how I could even possibly go on a vacation in nine days.  My surgeon who I have come to consider overly zealous said that I would be fine the next day.  I was not.  I was hurting and adjusting to the hole that required a routine of care.  I was walking with my back down because it simply hurt too much to stand straight up.  I felt like my recovery was like the process of evolution.  The picture below perfectly sums my process of recovery. 

It took me a few days to fully stand up without any stabbing pain.  Another challenge is being comfortable with sitting for an extended period of time.  I knew that I had quite a trip from Baltimore to Denver then to Albuquerque then back the same route.  I was hurting when I got to Albuquerque last Wednesday.  I was typing part of this blog entry on my last flight from Denver to Baltimore last Sunday.  And I feel pretty good.  I will be landing in an hour.  I was frustrated that the flight was delayed almost three hours due to some mechanical issues with the plane.  I spent four hours in the Denver airport walking around and standing which gave my wound a relief and made this final leg home easier. 

I had scheduled a steep hike in the vacation schedule.  I also scheduled advanced yoga classes.  Those had to be cancelled.  I was disappointed but was surprised that I was not bored at all.  I was really enjoying the trip and my dear friend’s company having culinary adventures, exploring arts, and walking around the old town. 

I attended a therapy yoga class with a favorite teacher.  I have struggled to return to yoga after my second surgery.  I would try and find I was still too weak here and there.   A therapy yoga class is designed for those with specific physical ailments or illnesses.  It was the perfect class.  I did not have to do any sitting poses because those hurt.  She however had me do Supta Baddha Konasana.  

I was resistant to that particular pose because this past year it has felt like I had to spread my legs for too many doctors.  Doctor visits have become an invasion of privacy for me.  I felt violated repeatedly.  Now in yoga, I was to spread my legs too!  Agh.  I challenged myself to go for it and… it WAS healing.  I had control.  It was a positive experience.  After starting with that, she challenged me to do some standing poses.  I was surprised I could do some standing poses without causing any harm to my wound.  That whole class was like a booster to my self-esteem.  I had thought I am a wimp in yoga.  I left feeling more confident that my ability to do challenging poses is still there.  I just have to push myself.  The next day, I went back.  And…  I did a headstand for four FULL minutes.  I was not timing myself but the teacher was and praised me for doing it.  That was my first headstand since I got diagnosed with cancer.  YAY!  I was surprised and beaming with pride.  

I ignored protests from some friends and decided to go with my surgeon’s advice, “You can do whatever you want to if you feel comfortable,” I decided to go to a spa resort with natural hot tubs.  My surgeon said I could do whatever I wanted to as long as I kept the “hole” clean and dry.  She said I could swim!  I am still nervous about dipping in the pool with chemicals.  But… hot tubs with water from natural sources in the mountains couldn’t hurt.  I was surprised at how fast the wound healed.  I later learned that the water was high in magnesium and sulfate which Epsom salts also contain.  Part of my daily routine of taking care of wound is taking a bath with Epsom salts at least twice a day.  I went to the spa twice and it was soothing and healing. 

I wanted to stay away from reality but… my reality is looking better with each passing day so it’s time to live again.   I came back home and returned to work on Monday.  I went back to playing racquetball and loved it.  Yesterday, at the two-week post-op appointment, my surgeon said I was healing well and the wound is closing.  The infection is forever gone.  I no longer can see the flesh.  I can see the skin layers coming together from bottoms up.  Tomorrow, I am challenging my fear and will jump in a pool to do laps again.  I am quite nervous about it but I know I will be okay. 

Santa Fe was not just a vacation for me—to get away from it all.  It was also a place where I could begin healing and regain confidence in myself.  Onward. 

Healing can be simple, yet so complex

When I was a teenager, my family and I were watching this horrible movie, "Cape Fear".  It was so scary for me that I jumped onto my father's lap and buried my head in his chest.  The most traumatizing scene for me was when the guy raped a woman and then proceeded to take a chunk of her face with his teeth leaving a gaping hole in her beautiful cheek.

Tuesday night when I had a chance to look at the wound from the surgery on Monday.  I was taken back to that scene.  When I took a bath today, I felt it with my fingertips.  I was taken back to that scene again.  It feels like my doctor has yanked out a chunk of my skin out, not with her teeth but with scalpels!  Yep I have a three-inch hole.  The wound that just wouldn't close still had infection beneath the skin layers.  They removed the skin layers and the abscess leftovers exposing the flesh beneath.  I have been struggling emotionally with this the past two days while at the same time trying to get better physically.  They took my cervix, uterus, tubes, and then now they took out a chunk of skin.  What are they going to take next!?!

My doctor is very nonchalant about the whole thing.  She said to keep it clean and dry and that I would be fully healed in about six to eight weeks.  But but but I have a hole!?!  She didn't answer my questions about how to keep it clean and dry.  She said to resume my physical activities when I feel ready. That includes swimming. Hmph.  Swimming pools are full of chemicals.  Do I expose my flesh to that?!?   Yep. Yep.  It is baffling to me that she's treating it like a very minor paper cut.  I told her I was surprised by the hole.  She said that we had discussed last week in her office and that she will be cutting a 3-inch wound.  I told her that when she said 3 inches. I envisioned a hairline cut just like the 1.5-cm wound that they cut to drain the pus pockets back in June.  I didn't expect a HOLE!!!! She's still being nonchalant and didn't address all of my questions.

A spiritual friend told me to invite the healing and just roll with it.  Sigh.  My doctor and that friend are making it seem like healing is a simple process.  It's supposed to be peachy, eh? Yet it is so... complex.  I am sitting here typing this blog post and saying mantras to myself, "Embrace the hole... embrace the hole!!!!"  It's so difficult!

I am reading about skin wound healing.  Epsom baths, keeping clean with saline washes, applying Manuka honey, using cloth or gauze to protect the wound, etc. etc.   I learned fast that the gauze hurts so I am using cotton cloth to keep it covered.  I am getting myself situated to make sure I have all that I need.  For the past medical issues, I am well known for researching to be best prepared.  For this surgery, I was disconnected.  I was feeling, "Okay... this is still a drag.... okay what's next?"  So the outcome came as a huge surprise to me because I was not prepared for it at all.  I am now dealing with it.

I was surprised to have the surgery scheduled four days after I first met with the specialist for a consult.  I did not research the surgery and healing.  I was disconnected.  I was feeling discouraged that I am still trying to recover.  Monday morning came, I went to the hospital with my iPad.  I kept on watching TV shows, ignoring things that were happening around me.  They did not have an interpreter and kept on saying, "I thought you were going to bring one!?!" Huh!?!  I told several people on Thursday and Friday that they needed to make sure an interpreter was present.  It was my first surgery ever to have no interpreter.  They did turn on the VRI machine which amazingly worked somewhat for two parts... conversation with the nurse to prepare for the surgery and the conversation with the surgeon and the anesthesiologist.  It was difficult to see the monitor when I was laid back in the bed.  I was feeling exasperated that I still have problems obtaining interpreting services even after I made some noises in this particular medical center.  Agh. I kept on insisting on a paper/pen communication.  The nurse was irritated with me.  I pushed and pushed and she relented.  They sent a technician in to put in a line.  She looked so nervous and thrilled to meet a Deaf person.  I told her where the perfect entry was but she stated that she was not allowed to go to that area.  She looked elsewhere and was poking around hurting me.  I have a lovely bruise as a result.  I told her to stop.  I wanted someone else.  I insisted that the one around my elbow is the best entry point.  I know.  It's my body!  The nurse was irritated with me again and saying that it's very common to look for an entry point and that I should bear with it.  Hmph.  It was frustrating for me because I was trying to advocate for my own needs-- communication and physical needs.  And she was irritated with me.  I didn't deserve that.  Another technician who appeared very confident in her ability came in and poked in once.  You can see below in the picture -- a red dot on the bottom left side.  No bruising around there.  Red dot= good job.  Black bruise= bad job.  I was still disconnected though.

When I met with the anesthesiologist, I told him that he needed to make sure I had enough anti-nausea medication because eight years ago, I had a bad case of post operation nausea and vomitting (PONV).  He said he would but I don't think he was taking me seriously.  I don't think he really heard me because I had a much worse case of PONV than eight years ago.  I think it was because I was not 'on' on Monday morning.  I was really disconnected and not willing to face the reality that I was going under the knife again.  I was just staring at my iPad constantly. I was not fully advocating for my needs as I normally would have.  I was throwing up everything I was digesting up until Tuesday night.  I just started eating and drinking again yesterday.

When they were ready to take me to the operating room, I sprang a couple of tears from my eyes.  It was hitting me hard.  The operating room nurse assured me she was going to take care of me.  The rest of my hospital visit was positive- great nurses and great staff.  

Recovery has been dicey and tricky.  I am grateful for Mike's support and help at home the past few days.  I was a puking mess... I have been a crying mess... I have been in a lot of pain.  I am fortunate to have someone there to help me along.  Thank you, Mike.  

Let the healing begin... my nonchalant doctor said I will be fine.  I can just go back to work the next day if I wanted to.  I don't know how I could have when I was throwing up constantly all day on Tuesday.  I am trying to get used to the pains that come with the skin trying to heal.  I am hoping I can drive again tomorrow.  I can't bend down because it hurts.  I am trying to get comfortable with sitting up for an extended period of time, let alone be on a laptop.  I had scheduled myself to go on a mini-vacation next week.  I wonder how I can go.  My nonchalant doctor said I would be fine and can go on that vacation.  I am wondering if her nonchalant manner is a way to challenge me to heal quicker.  Maybe... maybe so.  Maybe I should just stop thinking about it too hard and just...... heal (think Zen Zen Zen) agghhhh!!!! Healing... can be so simple... yet so complex.  

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.  

September: Endometrial Cancer Awareness Month #4

Ovaries.  I know it’s supposed to be about the endometrium this month but… bear with me.  I am amazed by the number of women who I have met over the past few months who believe ovaries are just good enough for making babies.  When they are done, they are perfectly fine with throwing them out.  I met a woman at a gathering recently who was upset about her friend’s cancer diagnosis and then she was scared.  Her period has been iffy as of late.  She said that she wanted to ask her doctor to take them out because she did not need them anymore.  She had two children already.  I had to stop her right there and told them… those are not just for babies.   Ovaries are so instrumental in maintaining your hormonal balance.  Yes, maybe some days you feel like your hormones are getting out of control but it’s all part of the ride as a woman. 

Ovaries also keep you healthy.  Keeping your ovaries significantly reduces the risk of osteoporosis and heart disease.  Sadly, many doctors do rush into removing ovaries.  And women follow along.  A friend’s friend was about to undergo hysterectomy recently.  She was about to have both of her ovaries removed.  I begged her to tell her friend to fight to keep at least ONE ovary.  One ovary was bad… but the other one can be saved.  I was relieved to learn the good ovary was saved. 

Surgical menopause is a difficult process as well.  Women who experience menopause naturally go through changes gradually.  Imagine the gradual process that spans about one-two years all squeezed into an overnight process.   Some women have to undergo surgical menopause.  Many do not need to undergo that.  Women who have endometrial cancer are often urged to do a full hysterectomy removing their ovaries.  Dr. Jewell has been practicing for almost ten years.  In this time period, she has only seen TWO women who had endometrial cancer who kept their ovaries get ovarian cancer later in their lives.  The odds are very low, making it worthwhile to keep the ovaries.  The benefits of keeping ovaries outweigh the risks for sure.

Ladies, hold on to your golden eggs!

September: Endometrial Cancer Awareness Month Tidbit # 3

Colors Galore

I have been asked if the color peach applies to all gynecologic cancers since pink applies to the 'other' private part of a woman- the breasts.  Nope.

The color peach represents endometrial/ uterine cancers
Teal: ovarian cancer
Teal/white: cervical cancer
Purple: vagina/ vulvar cancers

Lavender: all kinds of cancer

I proudly wear a bracelet daily... lavender or peach.  It represents a part of who I am... a cancer survivor.  I have a peach ribbon on my backpack.  A few people have asked me about the ribbon.  One person said she is so used to seeing pink all the time.  It was good to spread awareness that way.

September: Endometrial Cancer Awareness Month Tidbit #2

Some pictures are worth a thousand words....

Okay... endometrial/ uterine cancer is 4th most common cancer among women.  What are the 1st, 2nd, and 3rd most common cancer among women?  

1st: Breast cancer... the odds are 1 in 8

2nd: Lung cancer... 1 in 16

3rd: Colon cancer... 1 in 19

4th: Uterine cancer... 1 in 41.  And it happened to me.  It's real.  

Endometrial cancer is the most common gynecological cancer, claiming about 8,000 lives per year.  

Three-Month Follow-Up Appointment

August 18th was when I had my three-month follow-up appointment.  It was also the first time I participated in a live support group for survivors of gynecologic cancers.  I will be discussing the support group experience in a different post.  I am still processing the experience.

My three-month follow up involves a pap smear and a pelvic exam.  When I turned eighteen, I remember dreading my first pap smear.  I was relieved that I did not have to do it more than once a year.  The universe must be playing tricks on me because now I have to do it four times a year for the next two years then twice a year for the following two years.  In my fifth year and beyond, it's once a year.

I suppose I am still tender and recovering because the examination hurt really bad.  And the pain continued through the next day.  Around September 30th (six months after my surgery), the internal stitches should start to dissolve or come out.  Other women speak of it as an uncomfortable experience.  It will happen to me whenever it does and however it would be like.

Results of my examination did not come quickly which surprised me.  I would think that cancer patients are filled with anxiety awaiting results.  The doctor was quick to call me when the pathology results came in last January to tell me I had cancer.  I emailed the office asking about the results about two weeks after the examination and got no response.  I suppose it could be inferred that no news mean good news.  I got the results from the August 18th's examination in the mail.  It arrived the week I was in San Diego.  It was a simple form with the following language, "This is to inform you that the test done on the above date showed the following results: Normal Pap Smear (no malignant cells)."

Still in remission.  Life goes on.

September: Endometrial Cancer Awareness Month Tidbit #1

I could swear that every month has several different types of awareness.  Before I investigated further, I knew of Endometrial Cancer, Lymphoma, and Deaf for the month of September.  I decided to Google to see what other areas of awareness exist for this month.  Pain, Children’s Eye Health and Safety, Alcohol and Drug Addiction Recovery, Children’s Cancer , Guide Dog, Life Insurance, Honey, and many more. 

Those awareness months are notable.  Awareness needs to be spread year-round.  I have met women who tell me that they learn a lot from my blog and from talking with me.  I will continue to want to educate others.  It should not happen just in one month.  But… in honor of this month, I will be posting some tidbits about endometrial cancer this month.

Endometrial cancer is developed after endometrial hyperplasia develops in the lining of the uterus.  Endometrial hyperplasia basically means the lining of the uterus has become too thick.  Endometrial hyperplasia does not always lead to cancer.  Endometrial hyperplasia develops when there is excess estrogen.  There are four types of endometrial hyperplasia: simple, simple with atypia, complex, and complex with atypia.  I had complex with atypia.  I asked Dr. Jewell to explain complex atypical hyperplasia in layman’s terms.  She said it’s when the lining in the uterus becomes too thick and messy.  I suppose it was what caused uterine polyps to emerge.  Progesterone can be used to treat simple and complex hyperplasia without atypicality… in the form of a pill, shot, intrauterine device, or vaginal cream.  That was why I had hormone therapy at the beginning, which did not work quite well for me for numerous reasons.  Hysterectomy is the best way to treat complex atypical hyperplasia and endometrial cancer. 

According to the American Cancer Society’s website, if the hyperplasia is atypical, there’s an increased risk of it developing into cancer.  Hyperplasia can be treated if detected early.  If not treated, 8% of simple atypical hyperplasia and 29% of complex atypical hyperplasia turn into cancer.  It is clear I had complex atypical hyperplasia for a few years before it became cancer.  It is challenging to detect.  However, one warning sign was that my period was heavier than normal.  My doctors thought it was normal part of becoming older.  My advice to women out there… if your period becomes heavier than normal, go find out why!  If a gynecologist tells you to suck it up and that it’s normal, seek another opinion.  You need to insist on getting a transvaginal / pelvic ultrasound. 

The New Normal: A Progression, Not A Destination

During my battle with cancer, other survivors and caregivers often spoke of the ‘new normal.’  I was uncertain of what to expect.  What is going to be my new normal?  Now that I have been in remission for a few months, I still do not know what my new normal entails.  It is an ongoing exploration.  The post-surgical infection has made the journey to my ‘new normal’ a bit tricky.   The infection has affected how I navigate through life.  Are those reactions to the infection permanent?  I don’t know.  Let me highlight some examples.

As I write this post, I am on a flight to California for another work trip.  I used to require window seats.  I liked to be away from the busy happenings in the aisle.  I liked to gaze over the changing landscapes as I flew.  I liked to lean on that side to sleep.  This infection has made me require an aisle seat so I could get up and walk around to minimize the aggravation on my wound. I carry a travel pillow with me for me to sit on because many seats aggravate my wound.

My posture has changed.  It made me sit or stand in a particular way to accommodate the wound.   Is it good?  Probably not but it feels comfortable to me now. 

It was determined about 10 days ago that the infection was no longer in my body.  My white blood cell count has dropped to the normal ranges.  Goodbye, antibiotics.  I look forward to healing from the nausea and diarrhea that the antibiotics brought on.  After learning the good news, I decided I wanted a break.  The wound care specialist, however, strongly advised that I keep on using the antibiotic ointment and cleansing the wound area until it is fully healed.  After months of poking, medications, ointments, yada yada, I decided to be rebellious and ditched the ointment for a few days.  Bad idea.  It has slowed down the recovery.  I was encouraged to accept this wound as part of my new normal.  Oh brother.  That little open wound that keeps on draining…. and is a huge annoyance.  I suppose so. 

I have learned to adjust my schedule… I would do a task that involves sitting for an hour then I stand up and do other stuff before sitting again.  That is probably a good thing because I have heard repeatedly from numerous sources that one should get up and walk around at least every hour to keep ‘active.’  So… the wound is making me active.

To ensure my wound remains clean, I have to wear cotton underwear.  I used to dread them.  I preferred nylon, satin, or lace underwear.  Now… cotton!  Boring, old cotton!  Okay.  I got some new cotton underwear… and they are actually comfortable.  Does that mean I am wearing cotton for life?  I don’t know.

I think that the point of this blog is...  I still do not know what my new normal is.  When cancer survivors and caregivers spoke of it, I thought they were referring to it as a destination… like I would have arrived at a final place after experiencing cancer.  It is not.  It’s an ongoing progression in which I continue to learn and discover about the changes that have emerged.  For example, I wear cotton underwear now.  But later on, what would my underwear choice be?  I don’t know.  What would it be like when I finally have a closed and healed wound no longer hindering how I operate?  I don’t know.  I think I will probably make a beeline to the chiropractor to get my posture straightened out. 

For a while there, I thought that I would have to see doctors on a regular basis.  It was driving me crazy.  I was seeing doctors on a weekly basis or even more.  The hiatus in my insurance coverage was actually a blessing in disguise.  It gave me a 15-day break.  My life as a cancer patient/ survivor made me feel like I was in a crowded space where I could not have some privacy and serenity.  Before attending my grandma’s funeral in Portland, Oregon a few weeks ago, I stayed with a friend in Independence, Oregon.  I loved her hometown.  It was so small.  It was so quiet.  Stores closed early.  There were more open spaces than buildings.  It was nice.  A big city felt cancerous to me.  Does that mean I want to move to escape to the boonies?  I don’t know.  This was a powerful metaphor for me… a cause for reflection of how things are slowly quieting down with the medical appointments and then maybe I can hope for a month without seeing a doctor for a month.  So far I have no doctor appointments in September and I hope I can keep it that way for now.  I need a break. 

Part of the progression is seeing how I am getting better.  I played racquetball four times last week and it felt awesome!  I did not get hurt or drop dead.  I, however, was unable to work out other days as I felt tired.  But I still managed to keep up the goal of doing 10,000 steps each day.  Today, I was able to travel with my bags and Chocolate in tow without getting tired.  The past two trips were tough and I was too exhausted by the time I get to the check-in counter.  I am sure I will sleep well tonight as it’s a long day of travel but I am feeling pretty good.  I am ready to try swimming again and decided that San Diego is the place to try it again.  It makes sense.  After all, San Diego was where I started swimming laps as a workout when I first moved there.  I am going to try a hike this week too. 

I am also back to working on my dissertation proposal with a renewed sense of energy.  I am truly happy to be embracing my nerd-dom once again.  Yes, the stupid cancer was an obstacle in my doctorate journey but I am going to finish that thing!  Thinking about research, talking about research, and reading about research are stuff that excite me again.  What has changed, however, I have decided to shift my focus from educational interpreting to medical interpreting for my dissertation.  My dissertation will be tied to cancer.  I am still working out the specifics so I may disclose more details at a later time.   Someone once said to me that once the cancer battle is over, I should get back to my dissertation and forget that it ever happened.  I can’t.  Cancer has become a new part of my identity and I can’t just remove that from who I am.  I am finding kinship with people who have battled cancer.  I thought I didn’t know many people with cancer but now that I have had cancer, I am surprised by how many people have fought cancer and survived.  They are everywhere but I did not see them before.  I smiled when I saw the woman seated next to me on this flight wearing a breast cancer bracelet.  I am wearing an uterine cancer bracelet.  We bonded over this little thing.  Back to my point… I truthfully DID NOT want to learn about cancer.  My dear breast cancer survivor friend said to me back in January, “Welcome to learning about stuff you did not want to learn… but you need to.”  I continue to learn about cancer on a daily basis.  I was in a funk and was trying to get myself to feel excited about working on my dissertation proposal again.  I wanted it to be tied to cancer.  It took me a few weeks to find a way to make it all work out that I did not have to do a major topic change at all.  And I am excited again.  Does that mean I will spend the rest of my academic life researching medical interpreting, specifically in oncology?  I don’t know.  It is an ongoing progression as I mentioned.  For now, it is something that excites me and that is good in my book.

One question that keeps on lingering in my mind… will I return to my die-hard type A personality?  I don’t know.  I have slowed down significantly.  Was it from the surgery recovery?  Is it because of the infection?  For sure, yes.  … Alas, is it a permanent change? I don’t know.  I do know I find myself feeling surprised that I did not accomplish as much in a day as I intended to.  Slowing down a bit is okay.  I suppose I am stopping to smell the roses, so to speak.  This has been a lesson in acceptance.  I am guilty of maintaining extremely high expectations of myself.  I am trying to be more forgiving of myself if I don’t accomplish as much as I wished.  Ironically, I am posting this online at the Los Angeles airport on a three-hour layover before I get to San Diego.  I used to be really annoyed by long layovers but I enjoyed this one immensely.  It is nice to be in the moment and just… wait, enjoy, and observe. 

Part of my exploration of my new normal is taking a hard look at whether I am leading a quality life.  I do not have any clear answers yet.  Answers are emerging slowly, but surely.  There are some things I want to change.  There are some things I want to continue doing.  There are new things I want to try.  Before cancer, I remember I was continually looking for the ideal balance in life.  I think this is true for everyone.  I thought I had answers before.  What is clear, those answers did not work for me.  I look forward to unfolding what works the best for me, only me.     

Staff.... huh? Staff... No! STAPH!

The past few weeks passed by like a whirlwind that prevented me from having the time and space to write a blog post.  I had a business trip, a funeral, summer school, and a wedding on top of battling an ongoing infection.

I am still the bird with a broken wing.  This past Wednesday evening, I broke down in tears.  I was aching for my active lifestyle.  I want it back!  I will get there at some point.  I hope it's soon.

Three weeks ago, my doctor confirmed that all the pus pockets were gone and that I could stop taking antibiotics.  The wound was still open and starting to heal.  At that point, I had been on antibiotics for a total of six weeks.  Near the end of that period, I was nauseous on a daily basis, throwing up, and having bouts of diarrhea.  My doctor said being on antibiotics were very hard on my body.  It would take a few weeks before I start to feel better.  I started taking probiotics to allow the good bacteria to re-build in my digestive system.

At the advice of some of my blog followers, I made an appointment with a wound care specialist and the next opening that worked with my crazy schedule was not until August 14th.  My doctor said that if I was improving for the next week, I could cancel that appointment.  I kept it because a few days later, I had a bad inflammation develop that was hurting really bad.  Oatmeal baths and zinc oxide helped minimize the inflammation.  I was not feeling well.  My doctor and I agreed I needed to keep the appointment with the wound care specialist.

And the day came.  The interpreter was signing after the doctor examined the wound.  "You have staff." (She did not fingerspell staff.  She used the ASL sign for staff).  I was trying to understand what she meant.  The nurse was talking, "Staff...needs to be resolved."  I was laying there on the bed trying to understand then the nurse said, "This infection..." and I immediately caught on.  I told the interpreter, "No! S-T-A-P-H!"  I told her it had to be fingerspelled.  And it meant DIFFERENTLY from staff.  She blushed and said she was sorry.  It was a good thing that I could put 2 and 2 together to figure out what the doctor and the nurses were talking about.  Sadly, many Deaf people cannot.  And the harsh reality is that there are interpreters who are not qualified for medical interpreting because they cannot clearly communicate essential medical information.  That experience hit me hard.  It made my heart ache for those Deaf people who leave medical appointments wondering what was really wrong with them.

Yep, the infection that has haunted me for the past 4.5 months (it emerged two weeks after the surgery) turned out to be staph infection.  I was baffled.  I wanted to know how I got it.  The wound care specialist explained further.  My immunity was impacted initially with the cancer.  The hormone therapy weakened my immune system.  Then the surgery knocked my immune system out.  My body was easily susceptible to any germs, including staph.  Doctors did not figure out it was staph until now.  The missing link in the treatment was topical antibiotics.  The topical antibiotics have worked quite quickly.  The wound has been healing quite well.  But today, it is slightly open and bleeding again.  I have been sitting working on my laptop a lot the past few days.  I was sitting on it too much.  Tomorrow, I plan on working on the laptop while standing up.

My doctor ordered bloodwork to check on everything to see how I am doing.  I went in to get that done last Wednesday.  My white blood cell (WBC) count  is higher than normal.  She said this high count is a clear indication that my body is fighting an infection.  One more week of topical antibiotics.  I still feel nauseous and headachy.   The diarrhea continues.  I am puzzled.  I am going to give it another week and see how I feel afterwards. It's been almost five months since my surgery.  I sure hope it all ends soon.

I am a bird with a broken wing

“There is nothing like returning to a place that remains unchanged to find the ways in which you yourself have altered.” -Nelson Mandela

Last Friday, I returned to San Diego again after 13 months.  I was thrilled to be back… to see the ocean, to see the palm trees, to enjoy the sun, and to see my dear friends and colleagues.  San Diego pretty much remains the same.  Sure there are new stores and restaurants that come with the ongoing changes that any city undergoes.  I have been discovering the ways I have changed the past 13 months.  The past 13 months have not been a walk in the park for me in different areas in life: personal, professional, academic, relationships/ friendships, and health. 

For as long as I lived in San Diego, I never liked to go to the beach.  It’s too messy.  Sand in shoes, on the feet, in the towels and clothing.  But I came to San Diego knowing that I cannot swim.  The wound re-opened on Wednesday and began to drain again which is a good thing.  I want all the pus pockets to go away.  Open wound= no swimming.  Living in San Diego meant I could live my love for swimming (in pools, to be specific) year-round.  It was natural that I would look forward to going back to swim in salt-water pools in San Diego.  Nope.  I ached for some kind of water activity.  Yesterday, a friend and I continued our Sunday morning tradition of walking for 1-2 hours.  Since the San Diego Pride was happening at our favorite walking venue, Balboa Park, we opted to go to Del Mar and walked along the coast.  I decided to go on the beach… and took off my shoes.   We allowed the ocean to come up to our feet and ankles.  It was heavenly.  Chocolate did not think so.  It’s ironic though… he lived in Hawai’i for the first five years of his life.  I found myself cleaning up the mess afterwards.  And quite frankly, I did not mind at all.  I loved getting the pleasure of soaking my feet in the Pacific Ocean. 

Since leaving San Diego three years ago, I have been coming back to San Diego for work at least twice a year until this recent hiatus.  I always packed my schedule with activities to enjoy San Diego, see friends, and work.  Since the infection continues to haunt me, I found myself slowing down.  I kept my schedule a bit open to allow myself to rest as needed.  It meant slowing down.  Allowing myself more time to sleep.  I did not allow myself to have much time to rest in Minnesota, which made the infection worse.  I was determined to make sure I rested in San Diego.  It’s so strange because there’s so much I want to do and see here, but I can’t.  The bed has become my best friend.  Saturday night, I slept 10.5 hours.  Other nights, I’ve averaged at least 8 hours.  As someone said to me, “”Your body only heals when you are sleeping.”  I was not feeling well on Saturday evening- I ached to go out with a friend and see the coast.  Nope.  Another friend brought me soup and then I slept.

It’s so unlike me.  A friend beautifully described it yesterday…  I am like a bird with a broken wing.  I WANT to fly.  I want to fly freely.  I want to play.  I want to soar and do so much.  Another friend said it’s not my personality to be laidback.  I am a Type A personality.  Before cancer, I could accomplish so much in one day that it’s amazing.  I have slowed down significantly.  Will I return to myself?  I don’t know.  Will that be my new normal?  I don’t know.  My friend on Saturday said after I told her that my surgeon said it would take at least six months before I feel like myself again.  She said, “Add some months to that because of that infection.”  It was like she slapped me with harsh reality but it was also truth that she lovingly told me.  She was gently reminding me to be patient with myself as I continue to heal. 

Sometime I feel like the world expects me to do so much.  They expect me to do this, that.  A friend said to me a while ago that her friend had similar cancer and she had a ‘procedure’ and is just fine now.  “I guess she’s just really optimistic.”  I later learned that it was not a hysterectomy but endometrial ablation.  It was an ouch for me.  I have received some similar comments from others who feel that I may be depressed which is hindering my recovery.  Despite what has happened so far, I think I am pretty optimistic.  I am still living.  I am still waking up in the morning to get to work.  I still find passion in cooking.   I still love walking.  I appreciate the little pleasures in life.  I get high on doing academic writing and research.  It’s my BODY that does not seem to cooperate.  Believe me, I WANT to do more but it’s like I am sitting outside my body watching, “Sheesh that body is so SLOW.  Get better!”  Then I realize I have to fully own that body and live inside that body… and roll with it.  My body will tell me when I can do so much.  I made my own peace with the fact that it is going to take some time before I can do much more.  I hope those in my world will be patient with me as I find my way back to myself.  Hearing things about how I may be pessimistic, depressed, or simply avoiding to do things are like knives to my heart.  Just be my cheerleader and say, “You’re doing great!”  That’s what I need. 

My name is Naomi and I am addicted to health insurance…

Yesterday afternoon, I got an email from Gallaudet University saying that my insurance plan expires tonight.  And that students would be renewed to a different type of plan or there’s always Obamacare.  Those were not their exact words but that was the gist.  I knew that the annual renewal occurs July 15^th so I was not worried until yesterday.  It is one thing to renew the same plan and another thing for them to dump the existing plan and go with a completely different plan.  Advance notification should have taken place.  I am figuring out how and who I can file a complaint for just one business day’s notice.  I am currently undergoing treatment for my post-surgical infection.  Of course, learning that my current plan is expiring was adding unnecessary stress on my plate.  I did not want to go a day without insurance.  Someone commented today that I was very dependent on health insurance.  Truth.  Yet, that truth hurts. 

If I did not have health insurance, I would have not gone to doctors that led to my discovery that I had cancer.  It made me wonder how many people out there are uninsured.  Despite Obamacare requiring people to have insurance or they would be penalized through their tax filing, there are people who are going uninsured because they cannot afford the monthly premium even with assistance or tax credits. 

I wondered today, how many of those people have cancer cells creeping in their bodies without them realizing anything?   Early detection is not possible for those people.  It makes me very, very sad.  I was insured.  Early detection was possible for me.  Early treatment options were possible for me.  Somehow, this makes me feel guilty. 

Luckily after scrambling around to figure out options, I was able to get an individual plan today, thanks to Obamacare.  The catch… the new plan doesn’t start until August 1^st.  Yep I am uninsured July 15-31.  A lapse that lasts for 2.5 weeks may seem trivial but… it makes me nervous especially with the infection. 

I asked to see my doctor today at the last minute to make sure I am on the right path to recovery.  We both agree that I am improving… the infection is still there.  She predicts that I won’t need any more draining.  We had to develop an action plan of care for the next 2.5 weeks.  She promised to take care of me via email.  I will be emailing her with updates of my recovery progress.  She ordered me more antibiotics.  She told me to finish my antibiotics tomorrow then it was time for my kidneys to take a break.  Since those antibiotics worked well, she wanted me to have enough on hand paid for by my insurance for the next 2.5 weeks.  What is even more concerning about the next 2.5 weeks is that I am going on a business trip to San Diego on Friday.  The last business trip I went on worsened my infection.  We discussed strategies for me to follow on this trip to ensure that the infection continues to go away.  And she will email me the green light to get back on my antibiotics if needed.  The wound has closed but is very susceptible to more bacteria as the abscess underneath has not fully disappeared yet.  Thus… no swimming.  I groaned… I told her San Diego was THE place to swim.  She could see that I ached to have some fun.  We both agreed that I had to shower before and immediately after I swim.  A watchful eye is the best we can do at this point.

I left the doctor’s office saddened that I cannot live without health insurance anymore.  My cancer is in remission but I need to be sure I retain the remission status.  One way to do that is to stay insured for routine monitoring and quick treatment options.  Somehow, I don’t think that system is fair.  I am blessed (and relieved) but many people are not. 

Raising Awareness about Cancer at All Ages

My infection continues to haunt me but I believe I am over the major hurdle.  I am waiting to see how the next few days play out.  I am so sick of taking those antibiotics.  I am deeply hopeful that this is over.  But that's not the topic of this post.

Last week, we sent Mike's youngest to the Annapolis Wellness House for a camp for kids between ages 6 and 12.  He had just turned six last month.  We have been trying to help him understand what cancer is.  As a child of Deaf adults, he invents signs that make conceptually sense to him.  He started signing cancer by initializing the letter C and moving it across the abdomen.  I showed him the surgical incisions on my stomach.  That's how he made the connection.  I tried to explain that cancer is not only localized in the abdomen but it can be found anywhere in the body.  I explained that his father, also a cancer survivor, had lymphatic cancer in his right armpit.  He continued to sign C across the abdomen.  I spoke with the social worker who coordinates the camp.  She said that it's very common for kids at his age to have rudimentary comprehension of cancer and that the camp would educate the kids.

The camp is for kids who have family members with cancer or have cancer themselves.  After the first day, he said he understood that cancer makes people really sick and that some people do die from it.  He met kids whose parents died of cancer.  He met a kid who had cancer since the age of 3. He met a kid who does not have much time left.  We could see in his eyes that he was impacted by the experience.  We were happy to see he had this educational opportunity.  The experience was so positive and profound for him that he asked if he could come back next year.  He remarked that he may not see the kid with cancer again next year.  Today, he was telling me that he felt he had more friends here than in Texas because the kids he met at camp were 'real friends' not 'fake friends'.  I asked him to explain more but he did not.  It is possible that he had meaningful connections with the kids at camp rather than just playing like many kids do.

I think it is great that he is getting the exposure.  It made me think of my own exposure to cancer I knew of cancer.  I have heard of cancer.  I have seen some friends battle cancer.  One dear friend died.  It was like I was one of the untouchables so it did not really affect me.  Now that I have had cancer, I am meeting more people who are currently battling cancer or have survived.  It can happen to anyone, really.  Awareness is key.  The more we know, the better prepared we are to fight cancer head-on.

Er... um.... ER!

Yep... the infection got worse over the weekend.  I went back to the doctor because I was having pains all over.  The pain spread into the sides of my abdomen.  This new pain hit at lunchtime on Monday.  I couldn't bear it.  I sat down to recollect myself.  Mike's boys were concerned.  The youngest, Robert, asked where my 'green pills' were.  They were actually blue pills that appear green through the brown pill bottle.  Robert asked about those pills the other day and I told him I was not feeling well and those pills are supposed to make me feel better.  I was going to take my 'green pill' after lunch that day.  The antibiotics were not strong enough to make the infection go away.  I called my doctor to ask what I should do.  She asked me to come in to be evaluated.  I went in... she said that the infection has gotten worse.  Thus, we had to drain those pus pockets she discovered on Monday.  She started to drain a small pus pocket but the procedure was extremely painful.  First, injections with local anesthesia (yes down there) then cut open then drain.  She felt that the pain was too much for me and she told me to go to the ER to get pain medication and stronger anesthesia.  Agh.

At the ER, they wanted to do CT scan with contrast.  I was like ugh.  Mike was unhappy that I have had a lot of CT scans.  While Mike ran home to collect his youngest from the neighbor's home and feed the boys dinner, I decided to research online about CT scans.  I learn that doctors are too quick to order CT scans.  I do feel that way with Dr. Jewell.  As much as I love her, she always orders a CT scan if I have this pain or issue.  Can we diagnose the pain without the CT scan?  I wonder.  I decided to refuse the CT scan.  I got injected with morphine that sent me to a happy, happy land.  After getting the doctor evaluation, they decided that the large pus pocket had to be drained.  The morphine definitely helped me get through the draining.  Having Mike there holding my hand helped so much.  I am surprised I didn't break his fingers.  They still had to inject local anesthesia several times and then cut a 1.5 cm incision and drained whatever they could get out.  The wound remains open today to allow for maximum drainage, although upon Mike's examination it is closing fast.  I was sent home with pain medication and told to continue the antibiotics, rest as much as possible, not to swim for two weeks, and not to drive for a week or until I'm done with the pain medication.

My internal medicine doctor asked to see me on Wednesday afternoon for a follow-up.  Mike was out of town for a job.  A friend drove me to the doctor's office.  She examined the area and we both agreed that the ER did not finish draining out one large pocket.  She also found a new small pus pocket.  She hopes that the antibiotics will help kill all the infection.  We'll see.

I really do not want any more infections.  I want to heal.  I want my life back.  I want to be active again.  I don't like dampening the boys' excitement when I tell them I cannot ride a bike with them or can't go swimming with them.  It sucks.  Mike and I were thinking of family activities and we find that there's not much I can do until this infection passes.  Onward.  That's all I can do.  Just move forward and hope for the best.

Enough with the Doctors, Poking, and Drugs!

I came back home from Minnesota feeling icky.  First, the travel itself was hard.  I was grateful to a dear friend for helping me with my bag from the airport to my room.  He did the same thing for my return home and escorted me to the check-in counter to drop off my bag.  Then the conference schedule was heavily packed.  Mentally, I was thrilled.  I was stimulated the whole time.  It was awesome to be able to talk about the work we do as Deaf interpreters.  Physically, I was worn out but I kept on going until the end of the conference.  Mentally, I am grateful for that.  Physically, I am paying the consequences now.  I got home at 3 AM Thursday morning due to flight delays.  And then I crashed.

My infection got worse.  This is my third surgery-related infection.  This one has been around for about 10 weeks.  It resulted into a huge abscess that started to bother me very much three weeks ago. I struggled with sitting.  I was put on a round of antibiotics again.  I started to feel better after a few days.  The abscess was shrinking.  Yay.  It was not gone when I left for Minnesota.  I hoped that it would go away on it own after I was done with the antibiotics.  Nope.  It became worse.

I had a follow-up with my internal medicine doctor this morning to check on the abscess.  I was hurting.  Everything hurts when I sit down.  She checked on it and find that the inflammation has become worse and the abscess has grown bigger.  It now measures 3.5 inches long, 1.5 inches wide and .5 inch deep.   She is working with Dr. Jewell to see how it can be resolved.  Dr. Jewell wanted a CT scan to take a closer look at the abscess and see if it affected the surrounding areas.  I dreaded doing the CT scan... because today's scan was my fourth CT scan with contrast in the past six weeks.  Yep... I had to drink the radioactive crap and get it injected inside me.  I had been doing well the first three CT scans but today it made me really sick.  I am starting another course of antibiotics in hopes that it will make the infection go away for once and all.  It's a stronger type of antibiotics and I was advised to eat yogurt with it because it would make me nauseous.  Radioactive crap and first doses... a terrible combination.  Forcing myself to eat some dinner tonight helped but after an hour, I'm nauseous all over again.  Sitting is too irritating to the abscess so I was advised to lay down to minimize the pressure on that area or I can stand and walk around.  If I'm not better by Wednesday, they are going to have to open up and drain the abscess.  My doctor does not want to do that because it increases the risk of more infection.

I came home in tears.  I feel frustrated.  I want to be BETTER.  I don't want to see doctors for a while.  I don't want to be poked.  I don't want to take any radioactive crap or medications.  I don't want to be sick.  I laid in my bed for a while today as I worked.  It did feel good to lay down again.  I was so thrilled to stop laying down following the surgery that I was ready to be on my feet once again.  Today, I felt like I was returning home when I laid in the bed this afternoon.  It's okay to lay down sometime.  Recovery is a gradual process.... and it is testing my patience.

As I struggled today with all that was going on with me physically, there was this person who kept on demanding that I reply to her emails or call her.  I did not see any of my personal emails the whole day until I got out of the bed.  Her last email was full of hurtful language.  I do feel bad for her frustration of not hearing from me.  I must confess... since I got diagnosed with cancer, I am valuing my private time even more.  I am behind on emails some days but... it is my way of recollecting myself before I face the world.  I can not attend to everything and everyone at once.  That's one big con about emails.  Prompt responses are expected.  I miss the good ol' pony express.  People expected less from me back then.  Sometime I need to just curl up in my bed and rest while I shut out the world.  Frankly, there's nothing wrong with that.  Let me be, please.

A Birthday Post

A dear friend sent me a video message today wishing me a happy birthday.  The English translation of her message in ASL was as follows:

"Wow.  What a year! Crazy! You survived one more year.  You experienced grieving, heartbreak, and suffering.  And you still showed your strength, resiliency, and your internal Amazon woman spirit.  I love you for who you are and your fight and your willingness and capability to explain your experience to help me better understand my world as well as your world.  Happy birthday from one of your dear friends.  Thank you for your friendship.  I love you."   

Yep... what a year.  This particular birthday feels bittersweet to me.

I am in Minnesota for a conference this week.  This morning's plenary speaker is currently fighting metastatic stage 4 colon cancer.  Her presentation hit me hard for many reasons.  I am sure I will discuss specifics of her presentation in future posts as I process those with more time.  She said one thing that resonated with me on my birthday.  She said that there's no such thing as being cancer-free.  Doctors say that just to mean that they did series of treatments to stop the cancer for the time-being.  The cancer is just in remission for now.   It could come back to haunt a survivor later down the road, whether it is a few months or two decades.  I sat there quietly and wondered to myself, "When will the cancer come back?  Will it come back?"  She explained that there's no cure which was exactly what I posted a few months ago.  There are treatments that stop the cancer from acting up for a certain period of time.  She described those treatments as a way to prolong your life.  True.

After getting my diagnosis five months ago, I did not think I would see my next birthday.  I did not think I would make it to this historic conference which is the first ever Deaf Interpreters Conference.  Yet, I submitted a proposal to present at this conference and I got accepted.  They asked me to finalize program book materials two weeks after my surgery.  I was heavily drugged as I threw everything together.  I will present tomorrow on one of my research studies.  I will just keep on living and thriving.  I don't know if I will see my next birthday.  It is not a guarantee for any of us anyway, cancer or not.  I can just take it a day at a time.  I can focus on making it a great day.  And the reality is, that's the best I can do.

One Thing at a Time

I have sorely missed blogging.  It's been a long while.  I had two major deadlines that required me to dive right into my academic life.  Yep, I was revising two papers that I submitted for publication. Those are papers about two research studies I did.  Nope, they are not my dissertation topics.  They were just two research projects I decided to do for fun during my doctoral program.  Yep, I am a nerd.  One was submitted long before I got my diagnosis.  One was submitted about a month before my surgery at Mike's encouragement.  I was ready to quit everything after my cancer diagnosis but Mike told me I had to keep on living my life.  I forgot all about those submissions as I battled the big C.

The editors came back to me about a month ago with feedback.  I planned to wait until the summer to return to my academic life, meaning get back to work on my dissertation proposal, as I wanted to give myself some more time to recover.  Nope.  The publishers had a deadline.  Why did they have to come at the same time!?!  I don't know.  I felt overwhelmed because I continue to struggle with filling up my schedule.  I still find myself exhausted at the end of day, having accomplished not as much as I would before the cancer.  I just dove right in.  I finished one manuscript last week.  I finished another one today.  Phew.  I am tired but I'm having this high.  It's the same high I feel when I passed my candidacy and comprehensive exams in the doctoral program.

I was remarking to a friend the other day that I don't know if I could do my first semester all over again.  My first semester in the doctorate program was like this: I was working full-time and I was taking six courses at the same time.  Granted, it was a suicide mission but I pulled it off.  Post-surgery, can I do that? I don't know.  I'm tired a lot.  A breast cancer survivor friend who has been in remission for two years said she's still tired.  Cancer is like that.  It slams you right in the face when you least expect it.  And when you are done, you need the time to recover from whatever your body has been through.  I was on a good track of returning to my workout routine but that slowed down recently.  I had been having some pains for several weeks.  I thought it was part of the whole process.  Two weeks ago, the pain got so bad that I could not sit comfortably nor do sitting poses in yoga.  I decided to see my primary care physician last Tuesday to see what's up.  She found that it was an abscess that has been growing for weeks and it finally got the best of me.  I am on antibiotics that is making it go away slowly.  I am happy to report that the pain is slowly going away.  I avoided taking pain medications because I needed a clear head to write the papers!  Now that I am done, it is nice knowing that it's an option if the pain bothers me really bad.

I ran into a breast cancer survivor at a gathering the other night.  She said that she learned one thing.  She would  just allow herself to schedule one thing/activity for each day and not commit to subsequent activities unless she could manage to finish the first one.  I felt that was a good advice and something I could live with.  Rather than feeling overwhelmed and drowning to the point that I get frustrated with myself for not accomplishing as much as I set out to.  Again, another valuable lesson in patience.

The past two weeks it's been all about writing, rewriting, and rewriting.  I ached to do other things such as writing more entries for this blog.  I wanted to continue working on my art project.  I wanted to... I wanted to... I wanted to... yada yada.  Now that I am done with the papers, I knew that the first thing I wanted to do was to blog!  Now I want to crash and have a long slumber.  I certainly lost sleep over those papers and I am still recovering.  Good night, folks!