Posts Tagged ‘surgery’

Five years since my surgery

What I wrote on my Facebook status on Sunday, November 25, 2018, and wanted to share here as well:

It’s now been five years. On November 25, 2013, I had open abdominal surgery for what turned out to be a borderline ovarian tumor. At a doctor’s appointment less than two weeks earlier, my doctor had expedited my surgery and told me that the tumor on my right ovary had grown and that it was either cancerous or borderline.

For me, this date is a marker of not only the surgery but also of change. I consider the surgery and the events surrounding it to be a turning point in my life. It’s been a very full five years. If you had told me in October 2013 where I would be now, I may not have believed you. Post-surgery, as I found emotional and physical healing, I left dreams behind and gradually accepted that what I wanted – and needed – was changing. I walked through a deep depression and made it out the other side. I discovered Nia. I found out I had sensory processing disorder, and it was a revelation that changed the way I see myself and my experience of the world. My love and I renewed our relationship and became closer than ever.
…and much more.

I don’t really believe that everything happens for a reason. Some things in life just happen. I do know that I am grateful for what I have now.

My surgery story, parts I and II.

Poem from one year after surgery.

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A visit to the doctor

To read my full surgery story, go here and here.

Scene:  April 6, 2016, Doctor’s Office at a Hospital in Albuquerque, New Mexico.

The office is pleasant in its own way, especially for a doctor’s office waiting room that’s located within a large hospital.  There is a table with coffee and tea.  There are magazines on tables between rows of chairs.

I take a deep breath, pushing away thoughts that I don’t need to be there.  I’m here for a followup, for a past issue.  I walk to the front.  The woman there apologizes to me and says that they are running behind, the doctor experienced complications during a surgery she performed earlier that day and now all appointments are running late.  I take the clipboard with the new patient forms, start filling out the front page.  She asks for my insurance cards and ID, and to take my picture.

Then I find a seat and fill out the rest of the forms.

I rarely count how many other people are in a room unless it’s immediately relevant to my experience.  The room isn’t full by any means, but there are enough people and there’s a steady trickle in and out while I’m there.  I hear an older woman talking to another woman.  Talking about grief, sadness edging her voice as she mentions her husband’s recent death.  “Does it get easier?” she asks.  She mentions her cancer is in remission.

With this exchange, I’m reminded of where I am:  an OB-GYN oncology office.  I feel out of place.  My ovarian tumor was borderline.  Somewhere in between.  Something that did not need chemo or radiation, but needed surgery and removal and regular followup.  I recognize the other women sitting in the waiting room may have very different stories.  An uncertain but hopeful prognosis definitely has a lighter tone than a potentially fatal one.

I wait, breathing in and out.  I grab a magazine with cover stories that catch my eye and then realize that it has those perfume samples that set me on edge.  I put the magazine down, looking messages on my phone. It might have been good to bring a book, but I don’t think I would have read much of it.  My attention is scattered.

Finally, minutes – almost an hour – pass, and they call me back.  More waiting, pauses in between a nurse taking my vitals and going to the wait in the doctor’s main office for a consultation.  Her office…looks like a regular office.  It could be the office of a CEO, or anyone of importance in an office-based environment.  It reminds me of offices in TV shows where people go when doctors deliver bad news about illnesses, in that there is an element of comfort about it:  photographs, artwork on the walls, a sense of homeyness. The environment puts me at ease, and I imagine that could be intentional. I look at the large mixed media art piece on the wall and find a place to focus on – my mindfulness skills come in handy in situations like this.  It has a quote from a Rumi poem written in pencil across the top.

mixed media piece in doctor's office

The doctor’s assistant, a young woman, comes in, asks me more questions.  When she asks me my marital status, I say partnered, engaged.  “That’s exciting,” she says, and her eyes find my ring.  “I like your ring,” she says, asking to see it up close.  “It’s aquamarine,” I say of the stone.  “That’s very unique,” she says, “There aren’t many rings out there like it.  I’ve seen about 10 people with my ring.  I can’t blame my husband, because I picked it out.”  She smiles, pauses, and then continues down the line of questions.  When she asks what I do, I say I’m an artist.  She looks back at the piece on the wall and says, “That’s cool.  Another one of her patient’s was as an artist.”
I’m struck by the word “was” here, realizing that could mean a number of things:  Someone who is no longer a patient.  Someone who is no longer an artist.  Or someone who is no longer alive.

The PA finishes her questions and leaves, saying the doctor will be there in a few minutes.  And she – the head of the practice – comes, wearing a dress and high heeled boots. Her demeanor is matter of fact, straight forward; generally kind but not too soft. She looks at my records, realizes that she doesn’t have my surgical records and will have to request them, putting call in to my primary care doctor.  She asks me how I’m feeling, and I answer that I’m doing well.  No bloating, no pain, my periods are regular.
She tells me that she’ll do a physical exam and answers my main question about the frequency of followups: I’ll need to get an ultrasound, bloodwork, and a followup appointment every six months for up to 5 years post surgery (I’m at about 2.5 years at this point), then once a year after that. I nod, saying I wasn’t sure – my main surgeon wasn’t an oncologist (although I did have oncologists participate in my surgery and the biopsy of the tumor) and had recommended annual followups.  She agrees that having more regular appointments is better:  “You’re young,” the doctor says, “And borderline tumors can come back.”  It’s better to be certain, cautious, safe.

The physical exam is fairly straightforward.  I’m generally amazed that this kind of exam has become almost routine for me:  I used to dread gynecologist visits and put off making the appointment.  I used to have to soothe myself for a few hours afterward – it felt invasive.  Now, I know that that was probably mostly sensory related, with perhaps some other trauma mixed in.  But after I first found out about the tumor, I learned to soothe my body and my mind, to tell myself that I needed to do this for my health, that it was uncomfortable but necessary.  And yes, I still dread making appointments.  I still experience some after effects…but it is more like a comma in my day as opposed to a period at the end of a sentence, energetically and personal space-wise.  After going to occupational therapy and doing my sensory diet on a regular basis, I find it easier now on a tactile level, too.  Not fun by any means, but easier.

It’s over.  I put my underwear and pants back on and make appointments for my next ultrasound and doctor’s appointment, which lands right before my wedding date in October.  I wait to make sure they’ve been able to located my surgical records, then walk out.  Once I am out of the elevator and step out into the springtime afternoon air, I breathe a sigh of relief. It’s over.  I won’t have to do that for awhile.

I am continually grateful for my health, for my body, that I live in a time that I was and am able to get treatment.  That my insurance currently covers the medical bills. As much as I may wish that I didn’t have to go to the doctor as often, I also recognize that this is one way in which I take care of myself.

Breaking silence and sharing my experience.

Yesterday, I posted the following on Facebook:

“This experience affected me greatly, and I recognize that I have not fully or openly acknowledged it here. So here goes:
Two years ago,
I had a serious health issue. I ended up having open abdominal surgery for what turned out to be a borderline ovarian tumor (also known as low malignancy potential – it had both both benign and malignant characteristics). In mid November, my surgery got expedited due to the tumor’s rapid growth and the possibility of cancer. I had surgery on November 25, 2013. At the time, I tried to just focus on what I needed to do. In retrospect, I recognize that the experience was draining and scary. Luckily, surgery and followups were the only treatment I needed. I still have regular screenings, and my last ultrasound showed no signs of recurring tumors.
Today, I am grateful for my health, and my body and spirit’s ability to heal.”

The post got many “likes” and several comments.  Beforehand, as I was sorting out what to post, I looked back to my posts from that time. The most I posted then was “going to the hospital for surgery” and something like, “I’m out of the hospital!”  I also had a few friends post on my wall that I made it through the surgery and was doing okay, but other than that, I didn’t describe what I actually was going through.

Last night, when I saw the number of responses, there was part of me that was like, “I denied myself the support at the time of my surgery by not sharing.”  I am deeply sad that I didn’t say more at the time.  I know why I didn’t, why I thought I couldn’t, but I no longer identify with the reasons.  I also know that it’s not something to blame myself for.  I am glad that I shared:  it breaks the wall of secrecy I held around me at the time, one I kept to follow the guidelines of a position and to protect a specific group of people.  In the end, I think my silence hurt more people than it helped or protected, including me.  Silence can create shame, and I believe that it affected my overall healing process.  I feel like I can breathe a little easier now that I’ve shared that piece.

In the future, I don’t want to compromise my values and my right to ask for what I need.  I deserve to ask for support.  I deserve to be as open as I wish about what I am experiencing.

I’m doing my best to allow myself to grieve, be grateful for the support in my life, and appreciate where I am at now.

For my surgery story in more detail, go here:

My surgery story, part 1.

My surgery story, part 2.

On waiting for a diagnosis.

For my full surgery story, go here for Part I and here for Part II.

I’m discovering that from the outside,

it’s scary.

From the inside, with my own experience, I didn’t fully allow myself to be scared about my tumor, surgery, or potential diagnosis.

Early in the process, after I found out I had some sort of cyst or mass, a friend asked me if it was benign or malignant.  I don’t really remember my answer.  It might have been something about the odds being in my favor based on my age.

I mainly powered through my process, concentrated on other things, distracted myself, did a lot of yoga to minimize pain.

My parents, who came down for my surgery, who got updates from my surgeon and oncologist, told me afterwards, “You didn’t tell us much about the cancer risk.”

Now that I have friends who have had to go through similar diagnostic procedures, I realize, wow, the waiting game can be really intense, the not knowing, the anticipating an outcome.

My recommendation to a friend:  Allow yourself to be afraid if that’s how you feel, but don’t feed your fear.  Research and get information if it empowers you, but don’t spend too much – if any – time on online forums.  I would add:  Advocate for yourself and your health.  Ask questions.  Distract yourself as needed, and also take time to be present.  Ask friends and family for support through the process.  Take care of yourself.  Be hopeful.

My surgery story, part 2.

For the first part of this story, go here.

November 16-24, 2013:  Before my surgery, I wrapped up loose ends at my part-time job and my full-time live-in volunteer position.  It was a whirlwind of a week, and I tried to stay focused on what I needed to do.  Write a how-to list for some of my tasks at work.  Make sure the house had coverage.  Announce that my surgery date got moved up. Cancel plans.  It was exhausting, but I almost didn’t notice.

I remember looking at my stomach in the mirror, which had swelled slightly as the tumor grew.  I touched the unmarked skin, realizing that I would never see that skin smooth and without scars again.

Somehow, I had kept the pain at a minimum.  Sometimes I would have a twinge of sharp pain that would make me flinch for 30 seconds or so, but then it would go away.  The night before my surgery, though, the pain was excruciating.  It was as though my body was saying, “It’s time.”  My parents, who had flown in to be with me for the surgery, wondered if they should take me to the ER.  I did energy work (Reiki) on myself that night, and my pain level went down.  The next morning, I went to the hotel’s hot tub and let the warm water relax me.  I was able to go to the hospital at the scheduled check-in time – 1 p.m. on November 25, 2013.

Considering the situation, I was actually pretty calm,.  There wasn’t much space for me to be anxious – I went into a space of absolute necessity:  it had to be okay for several doctors to not only touch me, but cut into me. I also had to accept any possible outcome.

I signed off on the possibility of a total hysterectomy.  If they found cancer, then that would be the result.  I didn’t know if I wanted to have children, but I appreciated having that option.  I knew that I would lose my right ovary when they removed the tumor. That thought was strange, too.

I remember being in the operating room.  It had white walls.  I remember sending good energy to the doctor’s, nurses, and other medical personnel.  They put the mask on me and I was out.

Upon waking up from my surgery, I remember a vague impression:  someone telling me that I could “still have babies.”  I came to fully with my mom by my side, who explained more in detail.   Result from the biopsy: borderline, also known as a “low malignant potential” tumor.  They removed the ovary with the tumor, along with my inflamed appendix.  Surgical terms:  oopherecotomy and appendectomy.   Borderline tumors are a strange category – they grow slowly, they grow on but not in organs.  They have characteristics of both benign and malignant tumors.  I always thought it was a question of either/or.  Not both.  (If you’re curious, here is a medical article about borderline ovarian tumors. The first page is enough to get an idea). I was relieved when I heard the diagnosis, but I also felt uneasy.

I was in the hospital for 2.5 days – Monday afternoon through Wednesday evening. My mom stayed by my side, sleeping in a chair that converted into a bed of sorts.  I had a roommate who by Tuesday was on the phone coordinating Thanksgiving (which was that Thursday).  After she left, I had a night of quiet before I got another roommate, who was in for followup surgery for a head wound and seemed to be chatting away happily with the hospital staff while saying her pain level was at a “10”. My own pain level ebbed and flowed.

Fear hit me afterwards. Before the surgery, I insisted that I was healthy aside from the growing tumor, and I realized that wasn’t quite accurate.  I repeatedly looked at journal articles about the chance of recurrence (it’s low).  Grief hit me, too, feeling a loss that seemed to go deeper than losing an ovary.  Exhaustion hit me, too, and I spent time napping, resting, and taking short walks.

About two weeks into my healing process, I burst into tears and didn’t really know why.  When I look back, I see that as the beginning of a depressive episode.  This depression would grow much deeper in the coming months and leave me with nagging thoughts that maybe life was not worth it.  It was all so much to go through.  And even though my incision healed smoothly and clean, and I started to regain physical strength, I still felt depleted and out-of-place.

After a few weeks of rest, I returned to my volunteer position.  A few weeks later, I returned to my job. I kept my expectations at the level they had been at before the surgery, and found I could not meet them.  My energy was lagging and my focus seemed blurry.  I continued to try.  It didn’t work.  I could get more into the details, and how other people played into my process and the trauma involved.

However, I think the bottom line was that I needed to take time off to rest and heal.  I needed to hit the pause button on my life as it had been, and restart when I was ready.  I now believe that my system was on overload and I kept on adding things on.  It was too much.   I worked hard and stayed longer than was healthy, and in the end, I collapsed – mentally, emotionally, physically, and spiritually.  This collapse led me to make a huge choice:  to leave and change almost everything, for the sake of myself, for the chance to renew my life.

My scar, while visible, has long since healed.  It will always be part of me.  I had my annual ultrasound a few weeks ago, and it came back clear – no signs of tumors.

Over a year and a half post-surgery, I am pretty healthy. My life looks different and my dreams have shifted.  I do have to say the surgery was a wake-up call, one that began with:  Listen to your body.  Listen to yourself.  Listen deeply.  Now, I am listening more than ever before.

My surgery story, part 1.

There are some events in life that shake us up and have the potential to change our lives.  This is one of mine.  I’ve referenced my surgery before – this is the beginning of that story.

August 2013:

She said something about thinking I was pregnant, and I recoiled. “No, that’s not possible,” I said. “Then it’s some kind of growth,”  she said.  “Your entire body is tensing around your pelvic area.”
I had gone to a body worker – a craniosacral and visceral massage therapist – for pain in my lower back. This was not what I expected. She did not charge me for this session, but recommended that I go see a doctor immediately.  I was so scared.

The pain went away, for the most part.  The growth didn’t.

I remember touching my abdomen on the right side afterward.  I could sense a slight swelling, and beyond that, there was a small mass, spongy in places, hard in others.  How long had I missed it?  It didn’t feel natural.  I had experienced occasional spasms of pain in that area for months. I explained them away as energetic – I’m quite somatic, so I interpreted the pain as my emotional and spiritual process expressing itself in a physical way.

I vacillated that weekend on making a doctor’s appointment.  I grew up primarily around alternative medicine.  I hadn’t had the greatest experiences with doctors in the past.  But still, I made the appointment.  The next few months, I had an appointment about once a month:  primary care appointment, X-rays; referral to ultrasound; referral to one OB-GYN surgeon, and then another.  Diagnosis-wise, it went from “Some sort of abdominal mass” to “complex ovarian cyst.”  I was definitely going to need surgery.  In October, the doctor told me I could have laparoscopic surgery, which is done with small incisions and a camera, and has a short recovery time.  I was put on a waiting list.

November 2013:

My future surgeon prodded my abdomen.  “It’s on the right side,” I said as she prodded my left.  She glanced at me.  “It grew.” She did an external ultrasound, which confirmed that the mass had grown significantly.  She told me that it was either borderline or cancerous.  Laparoscopic surgery was out of the question – it was too large by that point.  I would need to have open abdominal surgery, and soon.

…to be continued.

Reclaiming scars

I have a surgical scar that measures just over 5 vertical inches on my abdomen. I remember looking at my stomach in the mirror a few days before surgery, thinking that it would be the last time I would see it scar-free. In the months after, I look at my scar as if it were alien.

I told a friend recently that I didn’t know if I would ever wear a bikini or an item of clothing that reveals my stomach again. She told me she knew someone who had abdominal surgery and got a tattoo near or on her scar. This woman was a dancer who often wore crop tops that showed off her tattoo.

I don’t know if I’ll ever do something like that. Still, I love the concept of reclaiming scars, of shedding shame and self-consciousness around them. What would happen if more people reclaimed their scars, physical or emotional? I interpret this woman’s tattoo as a reclamation and celebration, a refusal to hide her body and its story.

Now, I lightly trace along the incision line of my scar. Over the past year and a half, I have become more familiar with it.  It is now part of my body’s story, part of me.