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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.
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.
Cancer
Today I found out I have cancer.
When you have lupus, it is kind of expected that you develop overlapping diseases - fibromyalgia (check), raynaud (yup), sjogren (most likely). You are always susceptible to diseases due to your weakened state (infection, certainly). You take longer to recover (cold for two months). And of course, lupus will wreck havoc and become a catch-all for any lapses in diagnosis (sick, why so sick all the time!). . . . But, I have to say, cancer kind of caught me off-guard.
Seriously, WTF.
Relationship
"It changes you."
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.
Side Effects
"All magic comes with a price." -Rumpelstiltskin
Without medicine, I would most likely be dead. To a lupie like me, lifesaving drugs are like magic. But like magic, taking these drugs comes with a heavy price of suffering its many side effects.
There are so many things wrong with me on any given day that a meeting with my doctor sometimes seems like a big negotiation session. With every sympton I describe- and there are many -there is a medicine for it. Of course, I would gladly take 50 pills a day not to feel all my pain but each pill comes with its own list of side effects. Choosing a medicine regiment is like entering a relationship with a potentially good person but with a lot of issues.
Over time, a number of medicine have been prescribed to me, many of which I have not taken, such as - omeprazole, valtrex, meloxicam, cymbalta, ondansetron, gabapentin, nexium, percoset, zyprexa - all dealing with a particular symptom (e.g., nerve damage) or with a side effect (e.g., nausea). Currently, I am only taking what I consider to be "life saving" pills. Basically, drugs that tend to cure, not mask my symptoms. These include an immunosuppressant, a steroid, an anti-malarial and a heart medicine. It's the barebone my doctor is allowing me to take. But even with these limited number of medications, I suffer multitude of side effects such as nausea, fever, vomiting, heartburn, dizziness, etc. Not to mention that by taking these heavy hitters, I am at high risk for other longterm side effects, such as cancer.
Being dependent on pills is very frightening. I got my first real scare when Storm Sandy hit and there was a danger that I would not be able to get my needed refills in time. More than water or food, my first thoughts regarding survival was my pills. I knew I would not last very long without them.
I dream of a day when I will be drug free, or at least, mostly drug free. But considering the drop in mortality rate among lupies taking these meds, I am glad I have the option to take them, even with its often heavy price.
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| My box of essentials |
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."
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."
Holiday Blues
Could this be it?
I cannot seem to shake the holiday blues. Usually, Christmas is my favorite time of the year. Even before the Thanksgiving turkey has time to digest, I turn on the Christmas music and start dreaming of the fir tree that will grace our living room (and of course, of all the lovely presents underneath). Even last year, when I was delirious from high fever, and barely able to sit up, I still looked forward to Christmas morning.This year, however, I just could not get my spirits up. Despite the cheerful carols on the radio, sentimental trimmings on the tree, fun stuffed stockings, smell of our douglas fir tree, "It's a Wonderful Life", the delicious baked ham, many gifts and happy family guests -- I just could not shake the holiday blues. Now, just a day before 2013, my negative mood is really getting to me. It nearly ruined Christmas and it shows no signs of abating.
Though I am sure it is not the only reason, I suspect the main reason for my low mood is due to lupus.
After nearly three years of being sick, almost one year of being devastatingly ill, I am still very sick. I am starting to wonder if this is it. Have I hit a plateau? Is this how I am going to be feeling forever? The possibility that this really could be it is bringing me down. I cannot seem to talk myself out of this funk. I have lost the one thing that lit my Christmas last year -- hope.
I am starting to lose hope very quickly.
I wake up every morning feeling like I have not slept at all. It is incredibly difficult to get up from bed and start a daily routine. This routine does not entail much. Just getting enough energy to wash, take my medicine and try to hold some food down is enough of a challenge. So it is easy to see how the holidays, which used to be so fun, is not so much fun anymore. To add just one activity to the day, for example, hanging stockings, takes Herculean effort. Then I am exhausted, must rest and take more meds. I have no appetite and it is hard to digest food so eating dinner is a challenge. But I have to for the meds unless I want to spend the night vomiting (though eating is no guarantee). Then trying to fall asleep and stay asleep is another challenge. I think of nothing else but lying down all day.
While meeting these daily challenges afforded me some small amount of happiness as my recovery progressed; it now frustrates me that this is all I can do to manage my day. Whereas, before I was happy that I was able to walk, now I am frustrated that I cannot walk without pain, or walk very far without assistance and rest.
Perhaps I am being greedy and need to let recovery take its time but it has been so long. And I cannot help but let thoughts that I might never be able to walk without pain or very far enter my head. I want to be happy and want to live my life but like a web, lupus has me wrapped up and I am unable to move forward. I feel like I cannot enjoy anything in my life since every day is a struggle. Every night, I go to bed feeling like I have survived, rather than, lived the day.
In ringing in 2012 my husband said his new year's resolution is to "live life". I loved this thought. We made a promise that we will live life. Despite our best efforts, 2012 was another tough year on the family. As we ready ourselves to ring in the new year, I fear that I may never be able to live life again.
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| Merry Christmas and Happy 2013! |
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