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.  

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.