This eventually became a series of posts chronicling the first month of my adventure with cancer.
Part 1 below deals with the drama of the diagnosis process.
Click here to read My Tiny Tumor Adventure Part 2: A Cancer Staging Story.
Click here to read My Tiny Tumor Adventure Part 3: Port Placement and Other Procedures.
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I predict one of the biggest questions people have is, “How did you find out you had cancer?” or something similar.
The hardest part of my cancer journey so far has been the three weeks leading up to my official diagnosis. Not knowing was intensely frustrating because my overactive imagination concocted all sorts of worst case scenario possibilities, and then once I had an answer I swept into denial mode, and my tire swung all over the place!
So here it is, my diagnosis story. Brace yourselves, it's epic in its own right. (A short version is at the bottom for monkeys with shorter attention sp– Oo look a banana!)
Let's go tire swinging!
Summer 2013
Decide to leave my teaching job in Utah in favor of being closer to my immediate family in my home state of California. Accept a part-time office job working for my sister, Michelle and her husband.
Notice a grape-sized lump on my neck above my left collarbone. No health insurance at
the time. Plus, it seemed like every time I saw a doctor regarding a specific
concern, my condition either resolved itself or turned out to be nothing. For
example, ten years ago I had a (much smaller) lump in the right side of my neck and I saw a
doctor right away and he told me it was nothing to worry about. That lump remained for several years then disappeared on its own. I figure this will be another one of those cases.
Finally get health insurance. Woohoo! Yet surely this lump is nothing. I have no other symptoms.
December 2013 – March 2014
Lump remains. Is it growing? Maaaybe…verrrry slowly.
Belly button pierced!
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| Who knew this would become integral to my cancer journey? |
Have my first ever margarita! Yum!
Yes, this is relevant. However, a quick side note:
The margarita and the navel piercing may be surprising to those who know I was raised
in the Latter-day Saint (Mormon) religion. Over the past few years I’ve gone
through an astounding faith transition, which is a story for another day.
Suffice to say, I enjoy having a drink once in a while.
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| Cheers! |
Wake up feeling like someone is pressing their thumb against my
windpipe. Nothing too worrisome; I can breathe fine. The sensation is mostly disconcerting.
I wonder if it’s
because of the previous night’s margarita. (See, I promised it was relevant.)
I conduct semi-scientific observations to determine what is causing the windpipe-pressure sensation:
Is it alcohol? Nope.
Caffeine? No.
Too much chocolate? No way.
Stress? Uh-uh.
Time of day?
Planetary alignment?
Sonorous Charm gone wrong?
Facepalm.
As far as I can tell, the sensation comes and goes as it pleases (which still happens as of me writing this blog post). (Update: The sensation went away months ago. Yay! I can breathe!)
By now, the lump feels like a golfball lodged in my neck. Pressure/pain/discomfort under my sternum accompanies the thumb-pressure in my throat.
Finally decide to see a doctor.
"Tiny" officially gets nicknamed.
I tell my family about Tiny and ask my parents for financial support (if only my bank account would grow like Tiny has). My sister/boss, Michelle tells me I can have any time off I need for appointments. Woot! Benefits of being employed by family!
For weeks I wondered if anyone else could see Tiny. Apparently not. My family didn't notice until I pointed it out.
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| I had to strain my neck to make Tiny appear for this photo. |
Set up a new patient appointment with a primary care physician. The earliest available appointment isn't until the following week. Grrrrr.
April 7–13
My Internet research intensifies like a graduate student with days left to write a massive research paper. Imagination erupts. I become more anxious than a bundle of sticks next to a wildfire. I can't focus on anything else and my appetite is nil.
Each morning I wake up nauseous and most mornings I dry heave
over the toilet. This goes on all week long. Yeah...it’s not a pretty picture.
I’ll just mark all future nauseous mornings with a little asterisk*.
I call one of my friends who had lymphoma as a teenager to ask what I can expect in terms of the diagnosis process. She gives me great advice, especially about writing down questions and keeping a personal journal.
Prior to my doctor's appointment, I make a few predictions based on my research:
1. My doctor will refer me to a specialist of some kind
2. Blood tests
3. An imaging scan or biopsy, or both
4. Surgery to remove Tiny
5. Tiny will be benign and my story will end there
Of course, my inner hypochondriac fears otherwise.
Pulse is skyrocketing.
Meet with my new primary care physician. She is awesome! Very
down-to-earth, compassionate, and concerned. She tells me Tiny could be a
cyst, an enlarged lymph node, or cancer. She orders an urgent CT scan and blood
work. She also submits a request for a consultation with an Ear, Nose Throat (ENT) specialist.
Predictions one, two, and three: check, check, check.
I am very grateful my doctor wants to get answers as quickly as I do.
Four vials of blood are drawn at the lab before I leave. At least the needle is less intense than a navel piercing.
CT scan of neck region. To make the images prettier for the scanner I have to get a contrast dye injected through an IV in my arm. Yuck. More needles.
That evening my doctor calls and tells me that Tiny is not a
cyst and that I actually have several enlarged lymph nodes throughout my neck.
She requests I come first thing in the
morning for more blood work, a more extensive CT scan, and a fine needle aspiration biopsy (FNA). Her top three guesses in order from best- to worst-case scenario: tuberculosis, sarcoidosis, or cancer.
I literally laugh out loud after I hang up. Maybe I'm crazy. Maybe stress has started to snap the strings of my mental violin.
Worst anxiety yet.
The doctor's office opens at 8:00 AM. I don’t want to leave my house. Terror has me tied up in knots. There are tears. My body trembles while I dress. I crawl back into bed.
8:30 AM: I muster up every drop of my remaining courage and force myself to the doctor. I talk with the receptionists about
scheduling my CT scan and biopsy, which first have to be approved by my insurance company.
I semi-joke that I am so on edge that I’m considering asking for medication to
help with my anxiety. Thankfully, one of the receptionists takes my comment
seriously and says she’ll let my doctor know if I want. Yes! I do I do I do! I
schedule an appointment to see my doctor that afternoon.
Three vials of blood are taken before I leave the office.
9:00 AM: Emotional
breakdown. Up until this point I chose to attend all of my appointments alone. I can no longer handle this on my own. I burst into tears in the parking lot. I call my sister Michelle and ask if I can hang out with her for the day. I continue to cry all the way to her house. I tell her about my morning anxiety nausea. Michelle, who happens to be seven months pregnant at the time, suggests I treat it like morning sickness and just let my body do what it needs to do. Wise advice.
10:00 AM: My mom and other sisters, Julie and Christine, come over. I weep in my mom’s arms
for over an hour. She weeps with me. A part of me feels embarrassed because I’ve
reverted to a child. Then again, that's what's great about moms; you are always their child.
As much as I hate to admit this, part of my breakdown is because I am seriously freaking out about finances. Regardless of whether Tiny is TB, sarcoidosis, or cancer, my mind is frazzled worrying about how I will afford any of the tests and procedures I'll need. My mom reminds me that she and Dad can help. I still hate putting more stress on them.
After a good cry, I make several phone calls to schedule the upcoming tests.
2:00 PM: My doctor lets me and my mom see the CT scan of my neck and lymph nodes. She points
out how several are enlarged beyond normal. The abnormal areas look like little clusters of popcorn to me.
I tell her about my anxiety and lack of appetite. She tells me I need to eat more to build up my strength for whatever lies ahead. She prescribes anti-anxiety/anti-nausea medication. Yay!!!
Two more vials of blood are taken before I leave the office.
7:00 PM: I chat with another friend over the phone and vent all of my frustrations and fears and blah! Talking relieves a lot of stress as well.
1:00 AM (I'm a night owl. Hoo-hoo!): The anti-anxiety/nausea med claims to last 6–8 hours. I gulp down a pill and prepare for a wonderful night's rest.
Stupid pill didn't work. I wake up five hours later. And I still feel nauseous. This time I take my pregnant sister's advice to accept the nausea and let my body do what it needs to do. While the dry-heaving is no fun, acceptance makes the nausea psychologically easier to deal with.
The Ear, Nose, Throat clinic calls and I arrange an appointment for Tuesday, April 22.
My
mom goes with me to my second CT scan, this time of my chest, abdomen, and
pelvis.
Evening: My doctor calls and tells me the enlarged lymph nodes are only
in my upper chest region (thank goodness).
Night: I take another anti-anxiety pill just in case the previous night was a fluke.
Anti-anxiety pill fails again. I quit.
Everything is resting on the FNA biopsy, which I can't schedule until the request goes through a protocol procedure.
My doctor calls. The TB test came back negative. I'm down
to sarcoidosis or cancer. She warns that if I have any trouble
breathing during the weekend to call 911 right away. Don't drive to the ER (do not pass Go, do not collect $200). Call 9-1-1. The warning is disconcerting at best.
At this point, I feel like the universe has tossed a coin into the clouds where it is constantly spinning and flipping, impossibly suspended in the air and there is nothing I can do to make it come down and land and tell me which side fate has chosen for me: sarcoidosis or cancer? sarcoidosis or cancer? Neither sounds like a picnic.
Relax and enjoy time with my family. No breathing problems. No emergency phone calls. Phew!
Receptionist calls to schedule my FNA biopsy. The earliest appointment is Friday, May 2nd,
nearly two weeks away. Ugh! Really? I ask to be put on a wait list in case someone else
cancels. All I can do is pray and rain dance and wait.
Double miracle day!
9:30 AM: While
Michelle and I sit in the ENT waiting room, the biopsy receptionist calls again. She
remembered me wanting to get an earlier appointment.
She has an opening for tomorrow. Yay! My wait time has decreased from two
weeks to twenty-four hours. First miracle!
Meet
with the otolaryngologist (ENT), who is also a head and neck surgeon. He listens to my story and mentions he has seen
the CT scans. He asks various questions about my health and I tell him,
"I'm as healthy as a button...well, as healthy as a button can be." Michelle laughs at me.
After
a quick exam of my neck, he mentions he normally performs FNAs on Thursdays,
but he wants to get mine done immediately. My wait time has gone from two weeks
to twenty-four hours to five minutes. Yay!?! Second miracle.
He also mentions we are specifically looking
for lymphoma. My response, "Oh...Okay." Hearing "lymphoma" out loud for the first time is weird. It feels more possible. More likely. More real.
He also wants to schedule me for an excisional biopsy (surgical removal of Tiny) that Friday
or Monday. Gah! So soon! I turn to my boss/sister and ask if I can have time off. Michelle grants
it.
A
nurse guides me and Michelle to another room for the FNA, which I pull through with flying colors. Easier than getting a belly button piercing. Highlight for more details: While I sit in a reclined, raised chair, the ENT first ultrasounds Tiny. A nurse and a student assistant are also in the room. And Michelle, of course. I watch the ultrasound on the little black-and-white screen while the doc measures Tiny. Then comes the lidocaine. I close my eyes and the doc numbs my neck with a single injection, which feels like a bee sting. And then nothing. I keep my eyes closed and do my best to remain calm and breathe. I feel various amounts of pressure around Tiny. Occasionally I hear a hissing sound in the distance, like aerosol hairspray. Michelle later told me the doc used five different needles to withdraw various samples and that hisses were from the nurse preparing the samples for examination. From ultrasound to "All done!" took around 15-20 minutes.
The nurse tells me I did better than a marine she once assisted during the same procedure. That's right. I'm one tough cookie. Fortitudine all the way!
Prior to leaving, I schedule my surgery for Friday. Fourth prediction: check.
The
rest of the day I hopscotch across several emotions: relief that the FNA is done,
anxiety towards my upcoming surgery, shock regarding everything. Every two seconds I
tumble through ten twenty thirty emotions. Everything is happening super fast and I'm grateful for it yet swirling and there's no time to process anything completely.
Thursday,
April 24, 12:00 AM – 1:30 AM
I won’t say much about this experience, except that night conducted an impromptu ritual. I dressed warmly, sat under the orange tree in my backyard, lit a tea
candle, and communed with the universe. It sounds silly, and I had a lot of cliche thoughts while gazing at the stars ("I am but a tiny speck in the grand scheme of things," "without darkness, stars cannot shine," blah blah blah). I won’t go into detail about the more insightful conversations and impressions I had that night. Basically, it gave me hope,
strength, and courage to keep moving forward. Absolutely one of the most
spiritual experiences I’ve ever had.
Surgery day!
Except for some expected morning anxiety nausea, the rest of the
day I feel amazingly calm. Still riding the spiritual high from Thursday night.
12:00 PM: My mom and youngest sister, Christine and I report to the hospital. My procedure is scheduled for 2:00 PM. We wait in the waiting room.
1:15 PM Nurse takes me to pre-op. Change into gown, vitals taken, IV placed, questions asked, questioned answered, blah blah blah.
Nurses and doctors occasionally ask me if I'm nervous. I tell them, "Honestly, I was more nervous when I had my wisdom teeth extracted years ago."
Before surgery, I ask my ENT if the FNA results came in yet. He says nothing conclusive. This is congruent with what my Internet research had mentioned, that an FNA biopsy is rarely enough for a definite diagnosis and that an excisional biopsy is best for accuracy.
3:00 PM: Wheeled into operating room. Sweet dreams!
4:45 PM-ish: When I wake up, I ask my mom if the ENT had any news. She asks if I really want to know. Yes, I do.
My mom tells me the ENT said it's lymphoma and that a pathologist still had to examine Tiny to determine which type. (According to my online patient account, my ENT and a pathologist discussed the FNA results at some point during my surgery.)
I admit I cried. However, is it strange they were happy tears? Maybe relief or something. I can't explain it other than I knew everything would be all right.
5:30 PM: Discharged from hospital. Return home. My dad and other sisters come to visit me and we share the news with them. We all process the information together.
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| Post-op bandages. |
Denial hits hard. Wow. Like the craziest, trippiest psychological experience. It deserves its own post.
Cancer? No way.
Someone must have made a mistake, switched the labels on a test tube, misheard information, whatever.
Four of five my predictions came true. Only one more for a perfect score.
The cancer center calls to set up a
new patient appointment. This temporarily brings me out of denial. I schedule an oncology consultation for
Thursday, May 8, over one week away, figuring I can cancel as soon as someone discovers a mistake has been made. I also request to be put on a wait list in
case an earlier appointment comes up.
By evening’s end, I realize if my ENT had enough
evidence to refer me to the cancer center, then I probably most definitely have cancer. Sigh. I reach a state of acceptance. At this point, all I can hope is that the second biopsy gets processed quickly and that my ENT will call as soon as possible with the results.
Wednesday,
April 30 8:16 AM
My phone rings. I greet with a jolly “Good morning!”
It's my ENT with the excisional biopsy results. He calmly explains that I have nodular sclerosis Hodgkin's lymphoma.
HURRAY!!!
I mean, not "Hurray, I have cancer." I mean, "Hurray, I finally have an answer to the question that has been tormenting me for weeks, nay months!" "Hurray" because the coin of fate has finally landed and I can move out of limbo. Sweet relief!
I probably sound crazy being all chipper and cheery after being told I have cancer. My ENT is professional, level-headed, and sympathetic. And I act like a duck on roller
skates. I thank him for calling me as early as he did and explain how I went though a crazy denial phase, and barely reached acceptance, and that he called me while I was in a
good mood.
My ENT relays some quick statistics about my particular type of lymphoma, that it's the most well studied, has high cure rates, and reassures me that all the odds are in my favor.
I am happy to finally have information. Happier that I don’t have to wait any longer for answers.
The other big stress reliever: Michelle worked behind the scenes to talk with our insurance representative. The three of us met and reviewed my insurance plan, plus alternatives. I learned that although still far from pots of gold under rainbows, at least my financial situation is not as dire as I feared. HURRAY! in the true sense of the word.
So that's it. My Tiny Tumor Adventure.
Stay tuned for the follow-up installment of "My Tiny Tumor Adventure Part 2: A Cancer Staging Story" in which we meet my oncologist and have more tests to determine how far the lymphoma has spread!
Cheers!
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| Tiny scar. |
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THE SHORT VERSION
Back in November 2013, I noticed a lump at the base of my neck on the left side. I hoped it would just go away on its own. Over the passing months, I observed it slowly grow. Nothing big; nobody else noticed unless I pointed it out.
In March 2014 I felt like someone was pressing their thumb against my windpipe and the sensation would come and go as it pleased. I also started to experience pain under my sternum. Otherwise, I was in perfect health.
Finally, at the beginning of April 2014 I decided to see a doctor. I had my first appointment on April 14 with my primary care physician. From there it was one urgent test after another, and a whole lot of wait time in between. I had two CT scans (from neck to navel, which revealed more lumps hiding inside my upper chest), lots of blood tests, a fine needle aspiration biopsy, and an excisional biopsy (surgical removal) of the original lump.
By April's end, my surgeon called with the results: nodular sclerosis Hodgkin's lymphoma. He told me it had a great prognosis, with an excellent survival and cure rate. Woot!
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