Cancer, absolutely and unequivocally,
sucks … it doesn’t just suck, it FUCKING SUCKS.
Cancer destroys health, finances, families. Cancer leaves children parentless and …
parents childless. Young or old, female
or male, rich or poor, fit or unfit, cancer is indiscriminate, it just doesn’t
care. Cancer, in one way or another,
impacts all of us. Most of us have lost
family members, dear friends, classmates, co-workers, or all the above to
cancer … others are currently battling the disease … … others are survivors … …
and then there are those of us with thyroid cancer … surviving becomes a
lifestyle filled with one or two, depending on the ever-changing dose, of the
little daily pills that keep us alive.
Not long ago I found my hand-written notes about cancer and heard a
quiet whisper that said “Mindy, I need you to blog this”. I have learned to listen to that whisper,
even when I don’t understand it or want to comply with it. My story is about living with T2, N1, MX
Papillary Thyroid Cancer to be specific and, as if that wasn’t enough,
hypothyroidism.
Symptoms and Diagnosis:
In late April of 2005 I
had an unusually sore throat which prevented me from swallowing. I wound up going to Urgent Care and was
diagnosed with tonsillitis, given a script for penicillin and was sent on my
way. After taking the penicillin my
throat started feeling better, yet I started coughing so hard and so much when
I reclined that I lost several nights of sleep.
One morning I woke up with a lump about the size of a baseball
protruding from the right side of my neck.
I assumed it had something to do with the incessant coughing, but when I
woke up with a fever three days later my boyfriend (at that time) basically
said “Go to the doctor or I’m dragging you in myself”. When I finally did go to the doctor my
temperature was 101.9. I wasn’t in pain,
just incredibly tired due to the non-stop coughing and warm, very warm.
The doctor, Dr. C., asked
me a couple of questions, on top of the plethora of questions asked by the
nurse, and then started examining my neck. I think he spent about ten minutes
just comparing the two sides of my neck and asking me if I was sure it didn't
hurt at all either when he pushed on it or when I swallowed ... honestly it
felt good to have him push on it, maybe because it is right under or alongside
a muscle? At any rate, it was uncomfortable and I noticed it occasionally, but
it didn't really hurt ... of course I was comparing the pain to that of the
tonsillitis episode rather than treating this as a separate issue. He boiled it
down to it being one of 3 things: It could be my lymph node, or it could be a
cyst, or it could be an infection pocket (or abscess). The only way to be sure would
be to have a CT scan done, in the meantime let's draw some blood and Hey,
anyone up for an X-Ray? I guess I was. Happy news was that my lungs were clear
and he didn't see anything alarming about my neck, oh and my white cells were
up. That coupled with the fever seemed to support the infection pocket theory,
so he increased the dosage of penicillin and said that he still wanted to have
the CT scan done to be on the safe side.
A couple of days later the
CT scan revealed that there was, indeed, a lump in my neck. The afternoon of the CT scan I met with Dr. C.
again and he scheduled a fine needle biopsy with my favorite E.N.T. doctor, Dr.
H. It is somewhat annoying to have an
appointment with one doctor to schedule an appointment with another doctor – I
suppose it helps them all stay in the loop…
The day before the biopsy I met with Dr. C. again. I thought it would be to discuss what I could
expect the next day ~ instead he told me that the lump was a lump, not a cyst
or an infection, it was a solid mass. I
spent the rest of that day reading anything and everything I could find related
to Thyroid nodules and learned that only about 5% of all thyroid nodule cases
are cancerous, and most forms are highly treatable ... somehow that didn't stop
my stomach from turning into a boiling pit of upset again. During the biopsy appointment Dr. H.
explained that she needed two different biopsy samples as there were masses in
my lymph nodes and a larger mass on or near my thyroid. More waiting, more thinking. My family and close friends can attest to my
extraordinary lack of patience when it comes to stuff like this. I just want to
know what it is so I can deal with it instead of having all the "if,
then" scenarios running through my brain.
On Monday, May 16 my phone
rang. When I heard the voice on the
other end say “You have thyroid cancer.” I felt the blood drain from my face as
the tears flowed freely. I had done a lot of research and had
convinced myself that I wasn’t special enough to be one of the 5% of cancerous
cases … pulling myself together I accepted that I am that special. I heard Dr. H. asked me to come to her office
the next morning to discuss the specifics and what treatment options were
available to me and guess I had presence of mind enough to write down the date,
time and address.
Surgery:
In talking with Dr. H. the
following day, I learned that the form of cancer I have is called Papillary
thyroid cancer and is the most common and easily treatable form of thyroid
cancer. Surgery to remove my thyroid and
the affected lymph nodes was scheduled for June 7th. One of the doctors during one of my many
appointments between diagnosis and surgery had said “If you had to pick a
cancer to have, this is probably the best one to pick.” Really??
If you had to pick a cancer??? “Alex,
I’ll take ‘Things no sane person would EVER choose’ for $1,000.“ Here is the other thing about that
unfortunate comment … I started to feel guilty when I would bring up whatever
fear I may have been experiencing, I mean, if this is the best cancer to have,
then who am I to complain, right?? I was
often asked who my oncologist was and would receive a confused look of “I
thought you said you had cancer???” when I would tell them I was referred to an
endocrinologist. “Ahh, so it isn’t a
real cancer then?” Did you seriously
just ask me that? Seriously? Yes, my misinformed, unintentionally
insensitive friend, it is a real cancer that doesn’t necessarily carry a death
sentence … AND now I feel guilty again.
The day of surgery a
priest came into my room and asked if he could pray for me. It seemed like a good idea and I started
crying as he prayed. I had written up a
list of people to be called if surgery went horribly wrong and it seemed a little
surreal that his prayer eluded to that same “if”. During the surgery, which the doctor called a
total thyroidectomy and right neck dissection, my thyroid as well as 38 lymph
nodes were removed. Later pathology
results found that the primary mass and 13 of the 38 lymph nodes were positive
for papillary thyroid cancer.
I have a vague
recollection of waking up shortly after they pulled the breathing tube out and
I gagged, vomiting all over the freshly sutured incision. One emergency sterilization, two Queen Anne
dressings, Xeroform, some gauze and what felt like an ace bandage around my
neck later, I was wheeled back into my room.
Soon after surgery my new endocrinologist, Dr. O., came to visit me and
his first words were “You look like you got hit by a truck!” … awesome bedside manner,
Doc. Prior to surgery he had not wanted
to discuss post-surgery treatment … now I was learning about I-131 Ablation or radioactive
iodine (RAI), which, per the good doctor, concentrates in any remaining thyroid
tissue and does not cause the sickness and hair loss associated with
traditional chemotherapy treatments ... I still didn’t know what I could
expect. He focused more on what I was
going to experience as I went into full hypothyroid mode, which is necessary
for the RAI uptake to be effective.
Hypothyroidism:
If you have never been
around anyone with hypothyroidism, here is a short list of the not so awesome
symptoms:
Weight gain: It is next to impossible to lose weight, but I
can gain 5 pounds by just looking at food.
I don’t think there is anything more frustrating to me than having one
of my doctors say “well, you just need to eat less and exercise more.” As if I sit down every night and eat a box of
donuts … I got so frustrated with this nonsense that I kept a food journal of
what I ‘normally’ eat and how often I exercised throughout any given week just
so I could defend myself. And then I
heard, “Oh, well, you are on a therapeutic dose of thyroid replacement, so I
don’t know what to tell you”.
Fatigue: I can get 8 hours of sleep and still have
zero energy. Napping becomes part of
daily existence.
Sensitivity to cold: I am cold all the time. ALL.THE.TIME
Memory loss: Wait, what was I saying? Yes, it’s that bad. I can’t stress this enough … keep a simple
journal and write EVERYTHING down, your doctor’s name, address, phone number –
dates & times of appointments, what medications you are taking (include OTC
and vitamins) and what you are thinking, feeling, or just want to talk to the
doctor about because the more hypothyroid you are the less you will be able to
remember. It can be a scary thing!! Oh, yes, and take that journal with you to
every appointment!
Depressed mood: Mood swings become the ‘norm’. “You are angry, why are you angry? You were just laughing and now you are
glaring … are you bipolar?”
Dry skin, brittle hair and nails: I itch all
over and my hair and nails break easily.
Hair loss: Not only does your hair become brittle, but
it also falls out. NOTHING compared to
the loss experienced under chemotherapy, however I noticed more strands of hair
in my brush than was normal.
It isn’t fun to experience
and it impacts not just the person with hypothyroidism, but everyone around
them. Without a thyroid I will forever
be considered as having hypothyroidism.
I will be on Synthroid (levothyroxine), a man-made thyroid hormone
identical to thyroxine, the hormone that’s naturally made by the thyroid gland,
for the rest of my life. When on the
correct dosage, I experience very few of the symptoms outlined above and have
learned how to cope when I forget to take my meds. I have an alarm set on my phone to remind me
to take my meds every day and I still manage to forget occasionally!
Treatment:
Between July of 2005 and
January of 2007 I underwent several RAI treatments. Because iodine is supposedly only absorbed by
the thyroid, the radioactive iodine targets and basically kills off any
remaining thyroid tissue. As mentioned
previously, to allow the RAI to work efficiently, I had to stop taking Synthroid. Prior to taking my first dose of RAI a bunch
of lab work had to be completed first.
When results showed that my TSH had gone from .98 to 50, it cleared up
why I felt like a frozen human slug and I fully understood what the symptoms of
hypothyroidism are. The dose of RAI I
was given was just over 150 mCi, which was low enough to not require that I be
hospitalized. If it had been over 200 mCi,
not only would I have been hospitalized, but I would have been kept in a
separate wing of the hospital. I
remember that there was a distinct metallic aftertaste and my mouth was
incredibly dry … I recommend stocking up on Lemon Drops or your favorite hard
candy in advance! After sitting in
isolation, for what seemed like half the day, waiting for the RAI to be
absorbed, I was sent home and required to be in ‘self-isolation’ for the next 7
days.
**Here is a little tidbit
about RAI that I have since learned … RAI has Uranium on it, which is what
makes it radioactive … it is a toxic heavy metal. My doctor felt it was the best option for the
stage my cancer was in, however there are other options available. It’s still cancer and dangerous if not
treated correctly, so weigh all your options carefully and consult with a
qualified holistic doctor if that is the path you choose to take.
Isolation:
My first three days of
isolation were spent sleeping for the most part. I’m not sure if the basic guidelines have
changed, but back in 2005 self-isolation included 1) maintaining a six-foot
distance from others, 2) sleep alone, 3) drink plenty of liquids, 4) use
disposable utensils, 5) use separate bath linens, 6) use good hygiene habits;
wash hands frequently and flush toilet twice after each use, 7) rinse the
bathroom sink and tub thoroughly after each use. One would expect these to be easy enough to
remember, however, I had to leave myself a note in the bathroom to remind me
about #6 & 7 … hypothyroidism really does negatively impact one’s memory! On the third day of isolation I could start
taking my Synthroid again! By day four I
was not as tired, however I was starting to feel incredibly bored. Days five and six were spent watching DVDs
and scribbling notes on scraps of paper that I stuffed into a folder for “safe
keeping”. If you have the energy for it,
focusing on a solitary hobby helps pass the time!! As someone who loves to hug and be hugged,
being isolated from the guy I loved was horrible. He would stand in the doorway of my bedroom
and send me an air hug & blow me a kiss before leaving for work. A sweet gesture that seemed to make me feel
loved and lonely at the same time.
Whole Body Scan:
My first whole body gamma
scan was one of my nightmares come true.
I was led into a chilly room and asked to lay down on this slab of
metal. After being strapped down the
technician pushed a couple of buttons and walked away. Slowly I watched the ceiling above me move as
I was delivered, feet first, into my coffin … Oh, Wait, no … it was the gamma
scan machine, my mistake. I freaked out
because the top of this “machine” was less than 2 inches from my nose and the
cartilage in the sides of my nose, which is supposed to be more firm and keep
the air passage open, is more flexible and collapses when I lay down, making it
very difficult to breathe through my nose.
NOT a good combination! Lesson
learned from this experience … 1) wear a Breathe Right strip and 2) wear a
sleep mask … these two things made the subsequent gamma scans much less
traumatic. I learned that day that I am
claustrophobic…
Life continues:
Over the past 11 years I
have seen more needles than I thought possible.
I go to the doctor every 6 months to have my tumor maker checked …
Thyroglobulin is a protein that is only produced by thyroid cells, both healthy
and abnormal cells, so it is used as the tumor marker for thyroid cancer. Last year my Thyroglobulin level more than
doubled, which caused some alarm. The
ultrasound, and subsequent CT scan, of my neck showed that my thyroid bed is
clear, which means that there are abnormal thyroid cells somewhere in my body
pumping out this protein. 2 years ago, I
gave all my worries about this to God, however I am still very human and the
fears resurfaced. I am a mom now and the
thought of leaving my child too soon is heart-wrenching. The doctor said that we are just going to
continue to track it because additional RAI treatments will expose me to the
possibility of secondary cancers and it is likely that surgery isn’t an option
… at least, not yet. I gave it all to
God again … He is much bigger than anything I might face. I still don’t want to leave my child
motherless, however I know that he has a great dad and will be cared for and
loved.
My life did not end with
the diagnosis … On the contrary, my life has been full ever since. I have gotten married, started a family,
gotten divorced, started blogging and embarked on a beautiful spiritual
journey. Not a bad decade! Truth be told, as a big ole “screw you” to
cancer, I hardly ever think about it.
The Synthroid reminds me that I have hypothyroidism, NOT that I have
cancer.
Being a survivor carries
with it an obligation to raise awareness when possible. I have found this to be challenging for me …
until now. As a survivor, I frequently
question “Why did he/she die while I lived?”
No matter how I try to justify it, qualify it, or explain it, the
question still plagues me. Today the
“Why” appears to be to share my story with others. Not only do I have an obligation to raise
awareness, I also NEED to share my story to honor those who lost their battle. In 2014 I decided to get a tattoo of shooting
stars in purple, pink and teal – the colors of Thyroid Cancer awareness – to
celebrate 10 years of my daily survival.
It is much prettier to look at than the fish-hook scar that runs from
just behind my right ear, down the side of and curving around the front of my
neck … both have led to open conversations about cancer. I encourage you to “check your neck”! Don’t assume that the lump or bump you might
feel is nothing or will go away … please talk to your doctor about your risk
factors. The same holds true if you are
experiencing the symptoms of hypothyroidism.
If you think that something might
be wrong, push for answers. You know
your body better than anyone on this planet so do not let a doctor tell you
that it is probably just stress OR that it is in your head OR that it is to be
expected because you are a new parent … YOU know you better than ANYONE … be
your own advocate!!!!!
I feel compelled to talk
about my faith during this journey as well.
I “found” Jesus when I was approximately 7 years old. I have wandered away from God several times since
then. In 2001 I became disillusioned
with religion and the church I had been attending. By 2005 I had wandered so far off my path
that I had lost track of where that path was (it would be a completely
unrelated event in 2014 that opened my eyes to just how lost I had become) …
yet I was not so lost that I had stopped praying to or believing in God. My family and friends prayed with me and for
me, showering me with love. My faith in
the power of prayer is unshakable. Even
if you have lost your path, I encourage you to pray!!! This doesn’t mean that the journey won’t be
challenging, or that there will be an eradication of the disease – however the
calm and peace that can be experienced through prayer are powerful! My favorite Bible verse through all of this was
(and is) Philippians 4:13 “I can do all things through Christ who strengths me.” I wrote it on several pages in my journal. Find a verse that encourages you and write it
down, meditate on it, turn it into a prayer.
The challenges will seem a tiny bit less daunting when you are armed
with a positive attitude.
The emotions I encountered
mirrored those expected in the process of grieving. Here are my “words of wisdom”:
You may feel like
crying. Go ahead, let it out.
You may want to scream. Climb to the top of a hill, scream as loud as
you can and listen for the echo.
You may want to punch the
person next to you, don’t do that. Instead,
find a healthier outlet like going for a long walk to clear your head.
If you have a hobby, spend
time meditating while enjoying whatever that hobby is. Listen to your favorite music, over and over
and LOUD! Pour your heart out in a
journal. Only you will know what will
work for you to give you the space and freedom for the cathartic release that
you will need. Notice that I said WILL
need, not MAY need. Unless you are the
calmest, coolest, most collected person alive today, there will be at least one
moment of overpowering emotions. One of
the healthiest things I found to do is to acknowledge how I am feeling and let
myself truly feel it, and then come up with a game plan and move forward. If you are facing the challenges of a cancer
diagnosis, the support of friends and family are invaluable, however there are
times when this isn’t possible. If you
find yourself traversing this journey without that support network, talk to
your doctor and/or pastor about local support groups that you might be able to
tap. It can be scary and awkward to ask
for help, but it beats the heck out of trying to get through it alone!
If you are part of the
support network, I have but one piece of advice … be present for your friend or
loved one. You won’t know what to say,
that’s ok, don’t say anything … just be present. Hold them when they need to be held, listen to
them when they need to talk, scream with them if they want to scream, laugh
with them if they want to laugh, talk about the football game if that is what
they want to talk about. Bring them their
favorite coffee or tea and tell them about the cute barista! Just be present.
For additional information
and support, I highly recommend visiting the Thyroid Cancer Survivors’
Association’s website: http://thyca.org/
Take risks, love fiercely,
and live in the moment because none of us know how many moments we have left to
live! Above all, remember, no matter
what you are facing today, you don’t have to face it alone!
