Thyroidectomy

"It's the best kind of cancer"

It seems that I won the lottery of cancers.  From doctors to friends, when told that I was diagnosed with thyroid cancer, the response is that I'm lucky.  If I was going to have cancer, thyroid cancer is the best one to have. 

Hmmmm . . . the problem with this reasoning is that it's still cancer.  CANCER.

So as my surgery date for the total removal of my thyroid gland approaches, I have to muse about how I'm feeling. 

I was diagnosed with thyroid cancer back in April.  As my doctor notes, fortuitously so.  Because of my lupus, I have significant neuropathy issues.  My neurologist ordered a brain and spinal MRI which detected nodules in my thyroid and liver.  Since thyroid nodules are very common (about 50% of the population have them) and more importantly, 95% of them are benign, I did not give it much thought.  I had it biopsied and was just happy to get the unpleasant testing over with.  I did not expect a call from my ENT doctor, regrettably informing me that it is papillary carcinoma, that it is curable, that surgery should be scheduled, and that thyroid replacement pills will have to be taken for the rest of my life.

I listened but didn't really hear anything.  After I hung up, I cried.

While I shared my news with a few people, I stopped because I was getting responses that neither helped nor comforted me.

"Wow, is it serious?"
"Umm . . .  I guess not, it's just thyroid cancer (YES, IT'S SERIOUS, IT'S CANCER!)"

I then scheduled my surgery and for two months, tucked away my diagnosis as deep as I could and tried enjoying my pre-surgery days.  It worked, mainly because while the cancer is asymptomatic, my lupus is a minute-by-minute reminder that occupied most of my being.

Now with surgery three days aways, I cannot help but think about it.

So what do I think?

I am unnerved by the thought that an incision will be made on my throat.  How scary is that?  I try not to visualize this.

Then, I will have this scar on my neck for a very long time, if not forever.  This makes me so sad.  How do I mourn the death of my scarless neck?

Also, I'm scared.  What if something goes terribly wrong during surgery?  Should I have made a will? Make arrangements? That's silly, right?  Let's not go down that route.

After the surgery, I hope to be cancer free.  But despite the good prognosis, there is no guarantee.  Let's not think too far into the future.

With total thyroidectomy, I would need daily thyroid hormone treatment for the rest of my life.  This makes me so angry.  To manage this on top of lupus?  I will be mortally dependent on meds for the rest of my life.

I'm going to cry again.  I'm going to have to stop.  No more musing.  

Relationship

"It changes you."

Oddly enough, the two people who are most involved in my progress are none other than my rheumatologist and my disability case worker.  Who knew that in my mid-thirties, my closest relationships would be with these two people.

How did this come about?  Well, my immediate family, since they live it with me, no longer asks about my condition.  Outside of that, I have lost touch with most people I knew before the disease activity plucked me out of society and plunged me into my new (solitary) lupus life.  Others, I have very limited social interactions with and they have no idea what my life is like.

So it's funny that my confidants have become these two unlikely professionals.  I am hoping to add a third person, a much needed therapist to the list, but until then, these two people have been my therapists.  They have been there from the start of my disease activity, through the worst times and its ups and downs during my "recovery." As a primary doctor and as a case worker, they have checked in regularly to see the progress of my disease.

The other day, I was talking to my case worker and a question came up on whether I have been able to get out and socializes.  Whether I have been able to have visitors to break away from the solitude, and whether it might not be a good idea to do so as the winter months were approaching us.

I imagine she wast just being polite but I took the bait and poured my heart out.  I guess I sort of needed to verbalize what has been inside of me for a long time.

All of my relationships have changed, most not for good, including my relationship with my immediate family, my extended family, my best friends, my friends, my acquaintances, my co-workers, and frankly, even my dog.  Lupus has touched all.

To sort out what happened to each of my relationships will probably require individualized assessment. While lupus was a dominating force in the change, the change did not happen in a vacuum but in the context of pre-existing relationship.  How to go about bridging the gap in these relationships pre -and post- lupus will take time.  Lots of time.

I feel like I have been burned, left behind, uncared for, misunderstood, and/or forgotten.

But most importantly, I feel like I no longer care.  I can no longer relate to most people and therefore, no longer care for their company.  After all, how can I talk about shoes with a girlfriend when I cannot wear heels because of my nerve damage and it's difficult enough to walk in comfy flats.  How can I relate to someone with career problems when I have not been able to work for almost three years.  How can I enjoy a night out when I can barely make it through a meal.  The list goes on. . . .

When I explained this to my case worker, I realized that not only have I taken up her time, but I must have sounded weird.  Her response, however, surprised me.  She explained to me that what I have gone through, well, these experiences, it changes you.

She shared with me her personal traumas and how it changed her.

I always believed that people didn't really change.  Through time, we got better or worse, but our core remained the same.  But I do believe that I have changed.

My entire life, I long craved company.  It always seemed like anything worth doing was made more enjoyable by sharing the experience.  This is what fundamentally changed within me.  I no longer need or want company.  I truly enjoy solitude and every relationship seems like a burden.  This is mostly due to two things; it is physically difficult to engage in social interactions and it is nearly impossible for me to relate to most people.

I know it's not healthy.  But I am not healthy.

I have a small nugget of relationships that I have preserved, cultivated or resuscitated.  As I nurture these relationships, I do hope that I will be able to add more.  Almost as important as repairing old relationships is how to forge new ones.  As the relationships will be different, it will be interesting to see how things develop in the future.  I am, however, in no rush.

Birth-day

January 30, 2011

Motherhood started unexpectedly for me at 4:11 AM on January 30, 2011.

Unexpectedly - because Harry, my son, entered the world 7 weeks earlier than his due date.  I guess it should not have been totally unexpected since 50% of lupus pregnancies end before 40 weeks. Of course, hindsight is always 20/20.

Being a first time mom, the unknown is usually filled with two things -- excessive planning and unrealistic expectations.  I spent so much time planning and picturing a certain kind of birth that it was difficult for me to switch gears and accept what happened.

I went to birthing classes focused on natural birth and mothering.  I resolved not to resort to any drugs. I imagined a blissful labor.  I dreamed of holding my son just seconds after birth.  I planned to breastfeed right away.  I pictured having him fall asleep on me.  None of this happened.  None.  With many new moms, the birth rarely goes as planned but mine was just so far from what I had expected.

It was a quiet Saturday afternoon.  My husband went into work and I was starting to unpack some of my purchases for the nursery when the pain started.  Not that I would ever know what labor pains are like but from what I have read, this was nothing like it.  The pain was not in my abdomen but in my upper chest/back. I felt light headed, dizzy and had extreme difficulty breathing.  Nothing seemed to help.  My husband came home around 7pm when I finally told him about my symptoms.  He called the doctor's office who informed him that maybe I was suffering from gas.  He ran out and got some Gas-X.  I took some and passed out for a few hours.  I remember waking up and asking my husband to make me some food in hopes that it would allay the symptoms.  Things started to get a little blurry from here as my symptoms worsened.  I remember eating Chef Boyardee pasta and watching some SNL before we decided to check into the emergency room.  At this point, I had no idea what was wrong with me, only that the chest pain felt very much like the time I was hospitalized for pneumonia.

It didn't take long after they took my blood pressure to decide that I was suffering from preeclampsia.  I was told that I needed to deliver the baby right away.

What?  But I'm only 33 weeks pregnant? I'm not ready. What is preeclampsia? What's going to happen? Is my baby going to be ok? Am I going to be ok? Am I really having this baby now? What?

While I had so many questions, there was no time for debate and after a weak (and misguided) attempt at natural birth, I was quickly prepped for a c-section.  I never even read up on what a c-section was.

During the c-section, I did not feel any pain, only pulling and tugging.  I was fully conscience and I had my husband talk to me during the procedure so I will not have to follow the doctor's play by play.  For example, I did not want to hear the resident being scolded for dropping a tool in my open stomach.

This really was not how I pictured the birthing process.

When my son was born, I heard a cry and I was told he was healthy.  My husband snapped a quick picture but before I got to see him, he was taken to the NICU.  I was wheeled into a recovery room and was not allowed to see him.  I had to stay in the recovery room, where I was only allowed ice-chips and videos of my newborn from my husband's iPhone.

Later that morning, I still have not seen my son but I was moved to a hospital room.  I had requested a private room but while we were waiting, they put me in a room with another new mom.  She was full of energy, had a natural birth (and a easy one from what I overheard) and was on the phone non-stop telling everyone about her birth experience.  As I laid there, I started to really break down.  The anesthesia from the c-section was wearing off and as the physical pain set in, so did the reality of what happened.  I just gave birth, via c-section and I still have not held my son.  When they brought in my roommate's baby to breastfeed, I just snapped.  I was quickly changed into an empty room.  Apparently, the nurse overlooked a hospital policy against booking natural birth moms with c-section moms in the same room.

Later that day, I was asked if I felt well enough to go visit the NICU.  I was feeling awful and walking was extremely hard but since my baby could not be brought to me, I had to go see him.  The walk to the NICU was the hardest I ever made.  My heart broke when I saw my little boy for the first time.  When I got there, Harry was inside an incubator with heart and pulse monitors hooked onto his little body.  He was wrapped up in his baby blanket and hat.  He had an eye mask and was hooked to an oxygen tube.  I could barely see him.  He was so tiny, weighing in at less than 5 lbs.  I didn't know what to do.  The nurse thankfully came over and unhooked him so I can hold him for the first time.  When I did, words could not describe the dreamlike euphoria I felt.  Even though the birth experience was not what I had planned, holding this new life in my arms felt nothing short of a miracle.  At that moment, it was just me and little Harry.  Nothing mattered but that he existed.  For the first time since I entered the hospital, tears of joy, not of pain, wet my cheeks.

Whatever the beginning, he was here, in my arms.  And all I managed to say was "hello my baby, thank you and I love you."

Envy

I did not understand envy.  It seemed like such a wasted feeling.  Why dwell on something one can never have?  And, if there is something within your grasp, why not spend your energy trying to get it, rather than pining for it?

Until lupus entered my life, I guess confidence always trumped envy.

I remember the very moment that I first felt envy.  My husband was driving me to my doctor's appointment in the city and we were stopped at a traffic light near Union Square.  I caught a glimpse of a woman on a street corner hailing a cab.  She was about my age, wet hair and dressed in business casual (tan skirt, blue button down skirt, and heels).  She was also carrying a toddler while folding a stroller to put into the trunk.  My guess was that she was dropping the toddler off in daycare or preschool on her way to work.  Sounds like a stressful morning for this mom.  So why was I envious?  She embodied everything I would have been, if it wasn't for this awful disease.

I too wish I was starting each morning, getting dressed for work, in clothes that are now stored in boxes.

I too wish I could walk, and walk in heels.

I too wish I could carry my baby.

I too wish I could fold a stroller.

I too wish I could do all this alone.

I too wish I was healthy.

As I looked on wistfully at this woman and her child from the rearview mirror, I felt such a feeling of envy that I did not know what to do.  I did not feel that I could ever be well enough to be that woman, that mom, the old me.  It felt so silly to be envious of "me"!  So silly that I had to stop thinking about it before the feeling turned to anger.

Mid-Life Crisis

Nursing a hangover with fresh coconut juice on the beach of Ipanema, my girlfriends and I chatted about our night out and what is going on with our lives.  At least, that is how I pictured my 35th birthday celebration.  This, of course, did not happen.

Even though I turned 35 over a month ago, I could not write about it because I kept falling into a rabbit hole.  To deal with lupus and focus on recovery, I decided to shelve all thoughts about my life until I was in some sort of remission.  Not only were these thoughts too depressing but there was nothing I could do about it.  This resolution was broken as my birthday approached and to date, I am having difficulty pushing back thoughts of how it was and how it could be. 

In January 2011, when I went on maternity leave, I was a 7th year litigation associate at a big NYC law firm.  I had an offer to teach first year writing at Columbia law school and to join an in-house team at a company.  I was getting serious about my photography.  My husband and I were enjoying our newlywed life in NYC and at our beach house in Shirley.  Despite being diagnosed with lupus and being pregnant, I was still feeling healthy enough to work long hours and manage a decent social life.  While lupus was slowly creeping into my life, I was still feeling good, living my life and planning a future.

Fast forward to the present time, August 2012, and my life is unrecognizable.  I am only 35, but disabled and dependent on others for daily tasks. I haven't read a legal case nor picked up my camera for over a year and a half.  I cannot be the kind of mother I want to be for my son.  I had to give up living in NYC and am now living in Shirley full time.  I live a rather solitary life.  All dreams and aspirations about my career and life in general, gone.

As my recovery takes a long time and remission is yet out of my grasp, I have to face the fact that lupus is now a driving force in my life.  And that perhaps, this detour is no longer a detour but a new road I must take.  I keep hoping to "resume" my life -- to pick up where I left off back in January 2011 -- but this might never happen.  At 35, I have to learn how to plan and live a whole new life.  I have to say, I'm totally lost.  I do not even know where to begin.

A doctor from one of the lupus articles I read recently explained that he "tell[s] patients and their loved ones that you need to let go of what was, and what could have been in order to enjoy what is and what still can be. Once you accept this, it often makes living with lupus a lot easier to handle." Meenaskshi Jolly, MD, MS, director of the Rush Lupus Clinic and Assistant Professor of Medicine and Behavioral Medicine at Rush University.

I cannot seem to get there.  To accept that this is my life.  In some ways, this denial can motivate me or it can throw me into a life of misery and longing.  Perhaps I am not ready to accept my present life because I have not finished grieving for my losses. In any case, I am too sick to do anything now but hope that I am still recovering.  I have to believe that I am not plateauing and that this will  not be my permanent physical state.  For now, I have again decided to focus on recovery and revisit rebuilding my life when I am better. 

One step at a time.

Anniversary

Today is our 3rd year wedding anniversary.  We honestly didn't think we would make it this far.

Jim and I have known each other for about 4 years before we took the venerable vows to be there for each other.  Without hesitation, we made this promise out of deep love but neither of us knew that our vows would be tested this hard, and this early.

While the national average for divorce is about 50%, the divorce rate amongst couples with lupus is higher at about 83% -- and it's easy to see why.  Lupus is an unusually cruel disease, not only to the Lupie but also to all of Lupie's loved ones.

As my husband, Jim became my prime caregiver.  And he endured a lot. 

He endured the grind of being a daily caregiver.

He endured all my anger.

He endured all manifestation of my disability.

He endured my depression, mood swings and suicidal thoughts.

He endured lack of sleep.

He endured my delirium.

He endured the loss of a woman he married.

In my darkest and loneliest moments, Jim was there with his loving heart and open arms.  When the tears rolled down my eyes because I was in so much pain, both physically and emotionally, his knowing squeeze of my hand relieved me more than any painkillers.

No matter how ugly the disease was or how ugly it made me, inside and out, Jim stayed true to his vow.  And I thank him for teaching me how powerful love can be.  I am not sure what life has in store for me but I am glad that I will be making the journey with my hubs.

I will be your penguin

Life Uncertain

The salutatorian at my cousin's high school graduation urged his fellow graduates to take the path less traveled.  Using his experience as a caretaker to his wheel chair bound brother (due to a degenerative neurological disorder), he analogized living life to either taking well-laid steps or taking the less predictable ramps.  A rather weak anaology but I got the point.

Of course, let us not forget that the path less traveled is less traveled for a reason.  I, for one, am not a risk taker.  I like planning.  And I like following through with the plans.  This ensured that the outcome will be something expected.  Sure there are deviations and modifications along the way, afterall, one has to plan for the unexpected.  But I never planned for a chronic illness.  I guess no one does. 

I have been thrown off kilter and let loose on an untraveled path by an unpredictable force.  I don't know if and when I will get better.  I don't know what remission will be like.  I don't know if I can resume being a litigator.  I don't know if I can have another baby.  I don't know if I will have a near death experience again.  Because there is so much that I do not know and do not have any control over, I cannot plan.  It is an unnerving feeling.

The salutatorian summed up his speech with a very good point though, that by taking a planned path, you are not living your life but reading a script.  In many ways, I agree with him.  It is not unusual to set a plan and then to blindly follow it without really taking a moment to assess it.  I hope that living this uncertain life will allow me to actually live it.

The Diagnosis

"It's not like you are going to die. . . ."

I remember thinking I needed to exercise.  I was on a ski trip in Utah and I could not keep up.  I was short of breath, my chest was hurting and my body was aching after one run on the slopes.  I called it quits, had some chow and went to bed thinking I must just be tired from working long hours, recovering from the holidays and flying.  The next day, I woke up with incredible chest/back pains.  I told my husband Jim to press a huge book on my back while I layed faced down to try relieve some of chest pain.  I also tried getting a massage.  None of these remedies helped, but again, I thought it was just a regular sort of body pain.  Nothing serious. 


Then I woke up in the middle of the night crying.  Actually, I woke up wailing.  I did not know what to do with myself because I was in so much pain.  As soon as the sun rose, my husband and I took a cab to the nearest hospital.  They ran a variety tests all morning.  At the end of it all, a doctor came in, and proudly announced that they figured it out -- I had pneumonia.  What I found amazing about this is that they delivered this news like they won the lotto (for figuring out the cause) and as if I just had a common cold (no explanation whatsoever as to what pneumonia is).  This was the beginning of a long line of my interaction with doctors, where devastating news is nonchalantly delivered to me as if they were delivering news of the day's weather.  To make the long story short, I stayed out the rest of my vacation in Utah, then flew home to NYC, went back to work, and in a short while, was hospitalized.  I had my lungs punctured and fluids drained.  I was in debilitating bed rest for about two months.  My pneumonia was pneumonia pleurisy and possibly a flare. 


When I returned to work, I started to have muscle and joint aches.  As if I didn't learn my lesson the first time, I believed it was because I was out of shape again.  I thought the prolonged bed rest led me to these weird joint and muscle aches.  I was also unreasonably fatigued all the time and had to steals little naps just to get through the day, but again, I reasoned that the pneumonia must have taken a toll on my body.  It wasn't until I could no longer sit up on my own, or lift my arms to get dressed, that I finally went to see my doctor.   My primary physician, Dr. F, ran some blood tests and suspected that I might have Lupus or Sjogren.  He referred me to a rheumatologist, Dr. G, who confirmed that I had "mild Lupus". 


I was more confused than devastated.  Lupus? What is that?


So I asked my rheumy Dr. G., who advised that I do not scare myself with websites and support groups and instead, referred me to an old pamphlet from the 70s.  He stated that nothing really has changed since the pamphlet was published.  He then sent me home with a prescription for a low dose of prednisone.


I had lots of questions after reading the short pamphlet.  


So I then turned to Dr. F with my inquiries, to which he impatiently replied -- "It's not like you are going to die from Lupus!"


I took odd comfort in these unsympathetic comments.  After all, these are doctors and they must know what they are talking about, right?  Besides, I thought, my life is too busy to make room for Lupus.  If it's not going to kill me, what's the big deal?


This was the wrong start to being  a Lupie.  Since the diagnosis, the mismanagement of my disease led me to come face to face with death and it was an ugly fight.  I have survived but not without a heavy price.*  


*If anyone reading this has been newly diagnosed with Lupus, I urge you to become an educated Lupie.  Please reach out to your local support group, the Lupus Foundation of America or even to me.  Avoid websites until you have read some books on Lupus and living with Lupus.