Chemo - the Extended Version
My favorite social media guru would lecture me on how none of you will finish reading this because it’s too long, so I’ve wasted my time in writing it. He’s probably correct. That being said, I write for myself as much as anyone else & since I slacked in not writing about chemo for so long, I had a lot of catching up to do. So, I sort of apologize for the length, but I’m sure you’ll find my writing engaging & mesmerizing, so it will be impossible to NOT finish! Plus, don’t you wanna know how it ends!??
It’s been a little more than 3 months and I’m more than half-way through my treatment (Next step: 33 rounds - or 7 weeks - of radiation). Today, I finished my 4th & final round of chemo. It’s a monumental event, for sure. I can’t believe how quickly the time has passed since I was diagnosed and… I can’t believe how little I’ve written about my chemo experience. I just haven’t been inspired. As odd as that seems to me, it’s true.
The only reason I’m writing now is because I feel obligated to document
the fact that chemo really happened to me.
Lots of you have asked me how chemo works, what it’s like or how it affects me (besides the obvious hair loss). Even more are surprised to see me out & about, still working, spending time with friends and managing motherhood.
(Note to reader: this should be obvious, but just in case… this is MY story. this is MY experience. not ALL chemo is the same. in fact, it’s different for almost EVERY person. the info below applies to MY case, not your mom’s or uncle’s or grandma’s. EVERY cancer is different. EVERY person is different. Now you know…)
CHEMO: short for chemotherapy - aka chemical therapy - or
“therapeutic prophylactic” as my insurance calls it
Chemo certainly isn’t easy, but it’s not the worst thing in the world either - I could be dying. Or dead. As far as WHAT it is… I was prescribed 2 different chemo drugs: Cytoxan and Taxotere. Each attacks rapidly dividing cells in different ways - interrupting the reproductive cycle of the cell to prevent its division. (in addition to cancer cells, other rapidly-dividing cells include follicles of the hair (and only CERTAIN hair!), cells in the gastrointestinal tract, beginning at your mouth & ending at …well… you know where it ends, fingernails & toenails, reproductive organs…) Since chemo attacks ANY rapidly-dividing cell, that means that it attacks healthy cells, along with the cancer cells. The 3 week “intermission” between treatments allows the healthy cells to repair themselves & get back to normal, while the cancer cells crack under the pressure I suppose. And die.
Repeat this process multiple times & the hope is that the drugs
will kill all of the cancer cells. Right???
I received my cancer “cocktail” of Cytoxan & Taxotere via IV on a three-week cycle. I started Wednesday, August 3rd & went to the clinic every 3 weeks thereafter where I met with my medical oncologist for about 10 minutes. I was then called back to the chemo “lounge” where my oncology nurse placed an IV in my hand. I chose a private room, versus the public chair with a curtain between me & the next poor soul who found her/himself in a similar situation. Primarily because I slept through most of my treatment & prefer a bed over a chair for sleeping. I also liked the privacy of a door and more personal space. And, yes. I’m high-maintenance like that.
I received the following drugs in my IV, 2 at a time, to prevent potential side effects from the chemo drugs: Zofran for nausea, Pepcid for upset stomach, Benadryl for allergic reactions, Decadron (steroid) for side effects and, of course, saline. These preventive meds took about an hour to administer. Once these finish, the Taxotere is administered over the course of an hour & a half, followed by an hour administration of the Cytoxan. My first round took about 4.5 hours (I had an allergic reaction to Taxotere & by “reaction,” I mean shortness of breath, couldn’t breathe, strange coughing/choking), round 2 took about 4 hours, while rounds 3 & 4 took just over 3 hours. Lucky for me, Benadryl makes me drowsy, so I slept most of the time, while my poor mother sat upright in a chair for HOURS ON END.
I didn’t have any immediate side effects, besides the “reaction” to Taxotere during my first round, but the meds were adjusted and I’ve had no problems since.
So funny how they call it a “reaction” versus a “near death experience”
because if the nurses hadn’t intervened, I very easily could have died.
The nurse removed the IV and sends me on my way. I sometimes felt a bit drowsy after, but otherwise I’m perfectly fine. In fact, I drove myself to & from my last chemo today. I even stopped at Kroger for some “necessities.” Because I just can’t go a day without visiting my friendly, local Kroger…
I feel pretty normal the night of and the day after chemo (Thursday) because of the steroids - I took them the day before & day after each round. Fridays usually bring the first of the negative side effects, which worsen a bit over the weekend and continue into Monday and Tuesday. The side effects have been different each time, with a couple consistencies.
ROUND ONE was definitely the worst. I suppose the drugs were a complete shock to my system. I had diarrhea for days, I couldn’t eat anything but jello, pudding and cup-o-soup for about 5 days. (So much for my attempts at organic & healthful eating!) I took a prescription med, but it didn’t help. I became so dehydrated that I had to go back to the clinic for a bag of fluids. My mouth became crazy raw & I was prescribed “magic mouthwash” to soothe my sore tongue and throat. I grew hoarse and eventually lost my voice for a couple of days. I was tired. My shoulders and back ached horribly. And, I got a urinary tract infection. Fun times.
ROUND 2 was much better. In fact, I had so few side effects that I wondered if I had been given the correct dose of chemo! Damned if you do & damned if you don’t… My mouth grew raw a few days after chemo & magic mouthwash came to the rescue once again. I was still tired & my body ached a bit, but nothing unbearable. The tips of my fingers started aching & were sensitive to hot water. It was weird. Nothing super painful, but just sore to the touch & I couldn’t really grip stuff very easily. Toenails were a bit sensitive too, tho not as bad. I had a normal appetite for the most part & ate just about everything in site! My “girl parts” were affected which caused me some frustration, pain, etc. Ovaries obviously have rapidly-dividing cells, so they’re another unintended target of chemo.
ROUND 3 was also not so bad. I was more tired than I had been the previous two rounds (as expected). The worst side effect this time was bone pain - in my back, shoulders, knees, shins & hips. It felt as if someone was trying to drill into one hip, across my pelvis, and into the opposite hip. My shins felt like they couldn’t bear the weight of my body as I descended the stairs in my house and I could feel every vertebrae in my back. It wasn’t fun. My doctor suggested 800mg of ibuprofen with 1,000mg of tylenol. I opted for a narcotic. It worked well. I also acquired a twitch in both of my eyes this time - and both eyes at the same time! Not all the time, which is a blessing, but when they twitch, it’s generally simultaneously so it drives ME FREAKING NUTS!!! Still, not unbearable. I got some artificial tear drops & that has helped. My doc said that chemo causes dry eyes and can dry out my tear ducts. Thinning eye lashes also doesn’t help. :( Lastly, I noticed strange markings on my finger & toenails this time around. The oval shaped lines that used to lie just beneath my cuticles have traveled to the half-way point of my nail & sit strangely square in the middle. I was told to expect changes, but I’m hoping they’ll hold on just a few more weeks. It’s possible for your nails TO TURN BLACK & FALL OFF. Can you IMAGINE!? what the *#*?? Seriously. I will NOT be a happy camper if my nails fall off.
ROUND 4: You’ll have to stay tuned to hear about the excitement that is to come from round 4. I’m REALLY HOPING that my eyebrows, eyelashes & fingernails will hold on with all their might. The brows & lashes are definitely thinner, but they’re still there & I can still use mascara & eyeliner when needed. Can’t even stand to think about losing my nails, so I’m moving on…
It’s really amazing how far the medical world has come in reducing what used to be debilitating side effects. Most people can live fairly normal lives while undergoing chemo and that’s certainly a blessing. I’ve never thrown up, which is what I and everyone who’s ever heard of chemo expected. In fact, I’ve gained weight, which I didn’t expect - or want! Still…
I wish all the money and research that is devoted to making the side effects more manageable would be diverted to PREVENTION research or CURATIVE research!!! (another post, another time…)
See? Aren’t you glad you read to the end? You’ve learned so much about chemo - you can pretend to be a doctor!! And, you’ve got another blog post to look forward to in the future, where I rant about the state of our government’s priorities and how pharmaceutical companies OWN Congress. Yay!!
Much love,
Shevawn
I Am More Than My Hair
I returned to Bikram Yoga tonight for the first time since starting chemo and, more importantly, since losing my hair. I’ve been wanting to go back for a while now, but it’s taken me a couple weeks to muster up the courage to stand in front of a wall of mirrors. Bald. And practice yoga with a group of people - some I know, some I don’t. Bald.
It wasn’t nearly as traumatic as I expected. I didn’t sense anyone staring at me, as I had envisioned. I focused on the poses and my body instead of my missing hair. It was a transformational experience.
This disease has forced me to look beyond the exterior in so many ways and tonight was another opportunity to look within. I had to convince myself and believe that I am more than my hair. I am more than my scars and I am more than a breast cancer patient.
I’m also learning how to trust the love and kindness of others - that I won’t be judged, ridiculed or shunned because I have cancer or because I’m bald. Instead, I’m surrounded by friends who continue to amaze me with inspiration, encouragement & genuine acceptance.
Thanks again, Jodi & Bikram staff for your continued support. I am FOREVER grateful!!
Much love,
~Shevawn
Celebrate My Birthday For a Cure!
Initially, I was torn about whether or not I wanted to participate in all the “pink” festivities coming up in October - in recognition of breast cancer awareness month. Being a member of the “pink ribbon club” is still new to me & wasn’t something I ASKED TO JOIN or WANTED. Still, here I am… The Susan G. Komen Race for a Cure just so happens to fall on my birthday this year - October 15th.
I wasn’t sure I was ready to embrace my new membership into the “pink ribbon club” & not sure I wanted to celebrate my birthday amid a sea of pink. I know it will be an emotional day for me - I’ll be finished with chemo by then. I’ll be getting ready to start my 33 radiation treatments, I’ll be turning 38 and I’ll be almost 4 months out from my diagnosis. It’s a lot to take in & I feared being overwhelmed & overly-emotional in front of friends, family & strangers.
And then I thought to myself… SHEVAWN. SERIOUSLY. You have TONS of friends & social supports. This is an opportunity to CELEBRATE your journey thus far, raise awareness of the occurrence of breast cancer in women under 40 AND raise money for a worthy cause - what better way to spend a birthday??
So, I took the leap and created my own Komen team, Shine On! The name comes from words of encouragement I received from a dear friend on facebook. Despite the difficult times in our lives & the challenges we face, we must continue to let our light, love, strength, faith, spirit and determination Shine On! - no matter what. We do it for ourselves, for our families, for our children, for our friends and for ALL those touched by cancer to provide HOPE.
I created Shine On! only 2 days ago and started recruiting members & accepting donations only yesterday. In less than 24 hours, 12 people have signed up to walk or run with me and we’ve already raised nearly $1,000 dollars for the Komen foundation - $990 to be exact as of 10:45am. Out of 119 teams, ours is #5 on the fundraiser honor roll and, as the team captain, I’m currently the #2 fundraiser for individuals, out of 1,064 race participants. TRULY. UNBELIEVABLE.
I cannot say it enough: I have AMAZING friends. I take this fundraising achievement as a sign that I certainly made the right decision and am VERY MUCH looking forward to my birthday and the race next month!! If you would like to walk or run with me, or make a donation in your absence, please visit my team’s page: Shine On!
Everyone is welcome to join our team and I PROMISE this will be SUPER FUN. I’m encouraging wigs, crazy hats & funky knee socks for my teammates and no one is obligated to wear pink!! :) Except for me in my PINK wig!!
Thanks again for ALL the love!! Blessings to each of you…
Much love,
~Shevawn
It’s Just Hair
It will grow back.
It’s only temporary.
You’ll look good bald.
It’s just hair.
These are the common threads I’ve heard this week from well-meaning friends who honestly have no idea what it’s like to lose all of your hair in a matter of days. I thought I was prepared - as much as anyone can be. I read books on chemo & hair loss. My oncologist warned me I’d have no hair by my 2nd round of chemo (8/24). I went wig shopping last weekend. I’ve begun to stock up on hats and scarves to cover my hairless head. Still… NOTHING prepared me for the emotional trauma that ensued.
It started Tuesday night with an itchy scalp - 13 days after my first round of chemo. Yes, it happens that fast. Each time I scratched, I noticed tangled hair. Trying to smooth the tangles, I pulled out clumps of hair. It’s not natural. Same thing Wednesday - hair falling out everywhere. A friend convinced me to cut my hair Wednesday evening to “ease the transition.” Not sure it worked. Now I have a haircut I didn’t want to go along with the cancer & hair loss I also didn’t want.
Each time I look at my short hair, I’m reminded of my cancer and the impending farewell to my natural locks. Thursday and Friday I grieved the loss of my hair. I couldn’t go to work. I slept away the days to keep the tears at bay. Every time I run my fingers through my hair and pull out masses of hair, I cry. Uncontrollably. Full-on sobbing. I just can’t help it.
Since Tuesday, I’ve heard the voice of my inner toddler screaming, “I don’t want to cut my hair! I don’t like short hair! I want to keep my long hair! I don’t want to go bald! I hate cancer!” Despite my best efforts to find strength in such a tough time, I am unable to console my anger or quiet these inner protests. I sympathize with the desire to deny the inevitable. I decided I wouldn’t touch my hair, brush my hair or wash my hair anymore, to keep it from falling out. I considered wearing a hair net over my hair, hoping it would keep my hair attached. I care less about what I’ll look like wearing a hair net than I do about losing my hair. And no, I won’t apologize or feel guilty for my vanity.
I’m headed to Louisville again to pick up my wig. Despite the wailing toddler in my head and with the help of an amazing friend who agreed to “do the deed,” I’m going to say a final farewell to my hair today. I HATE IT. Just the THOUGHT of a pair of clippers against my scalp makes me want to throw up. And cry some more.
It’s been a tough week - the hardest week since my diagnosis. This is the physical, outward expression of all the crap that’s been happening inside my body since I started this battle. It’s emotionally overwhelming and exhausting. I need my friends to avoid depression, but being around people all the time is also draining. I’m sure I’ll be fine in a few days. I’m sure I’ll learn to embrace my new identity. After all, it’s just hair. Right???
Much love,
~Shevawn
Changing Woman
~by Hannah Graham
This couldn’t be more fitting. Thank you, Hannah for sharing it with me.
Changing Woman
(Navaho)
Round and round and round I go,
Changing as the seasons flow.
Young to old, then old to young,
Life has finished, yet begun.
Never fear for passing time,
Never fear you’ve passed your prime,
With Changing Woman in your heart
Whatever’s ended can still start,
Whatever’s old can be renewed,
From black to white to rainbow-hued.
So don your turquoise, dance your dream
Let Changing Woman reign supreme,
Then let your winter turn to spring
And know you can do anything.
I Am A Mother - Not a Gambler
This is becoming a pattern…
I thought today was my “biggest day yet.” The day I would FINALLY find out what will happen next in my war on cancer. I met my oncologist for the first time. She reviewed my most recent pathology report and the results of the Oncotype test. To my disappointment, she did not give me the clear-cut directive I was hoping for. We discussed the odds and projections, debated the statistics and, with her blessing, I decided to include chemo in my treatment plan.
Lots of people will wonder why. I get that. For me, there was no other option.
I am not a gambler and this is not the Kentucky Derby. I’m not going to bet the odds as they stand now, without chemo.
I am a mother. A single mother. To a beautiful, kind, smart, funny & loving child. If chemo will give me an additional 3% chance that my cancer will NEVER come back (and likely kill me), then I want that 3%. All. Damn. Day.
Not only do I want to live for myself, but I MUST LIVE for Hayden. I am his world and he is mine. I cannot leave him. It’s simply NOT. AN. OPTION.
So, I start chemo tomorrow. I’m sick of all the waiting, feeling like I’m doing nothing to fight this. The sooner I start, the sooner it will end.
I’m going to do 4 rounds total; one round (dose) every 3 weeks. My hair will fall out in about 2 weeks - don’t worry. Dr. Harper already gave me a prescription for a cranial prosthesis (or wig to you & me).
But, it is JUST hair. And it WILL grow back. And being bald is WAY BETTER than dying. Attitude is everything, right????
Much love,
~Shevawn
… From the Inside Out
I expected it. Others even told me to watch for it. But, I didn’t expect it to happen so soon!
Cancer will change your life. It will make you stronger. You will be better for it.
So. True. The most interesting part of my journey thus far: experiencing the changes within myself. Like a whirlwind, everything about my life is different. Forever. And, that’s okay. Perhaps I needed a change. Maybe I needed to focus more on myself & re-evaluate my life’s direction.
It’s been 43 days since I was diagnosed.
My priorities have been reorganized. My perspective has changed. My values have shifted. My determination is infinite. My love is stronger. And my spirit is tougher, calmer & more confident.
Wow… I can’t WAIT to meet myself 6 months from now!! :)
Much love,
~Shevawn
Nothing to Fear - but Fear
In January, I made a list of goals I wanted to accomplish in 2011, along with a few affirmations to keep me motivated. My favorite of these: Punch Fear In The Face.
I had no idea how important this mantra would become.
FEAR…
It’s a popular subject, often accompanied by unsolicited advice from God, your boss, your friends & even your neighbor. Excellent advice to seize the day (or the moment), to not be afraid, to have no fear, to trust in yourself or God or another higher power…
But, it’s difficult. And sometimes impossible. To LITERALLY, “be not afraid.” I always fancied myself a fairly strong gal, who is rarely intimidated and who grabs the bull by the horns.
In reality, I just figured out that I was a Big. Fat. Chicken. Afraid of EVERYTHING!!
I was afraid of success. And failure. I was afraid of what my mom would say or what everyone else might think. I was afraid of judgment and gossip. I feared change and the upheaval it generally entails. I feared love, knowing first-hand the heartbreak it brings. I feared myself, unsure of my purpose and worth in this life. At times, I preferred not knowing, not seeing and not hearing, believing the truth can’t be real if I keep it outside of my world - beyond my walls.
With the instincts of a child, I roamed for 37 years, lacking any “God-given” intuition, placing my trust in others instead of myself. Never fully-vested and instead, paralyzed by a fear of the unknown.
Until now.
Until I was forced to listen, forced to understand & forced to choose between living and dying. In the 6 weeks since my diagnosis, I have faced my own mortality and Let. Me. Tell. Ya. - it doesn’t get much scarier. As someone who’s not afraid of the bull or its horns, I decided to arm myself with knowledge, surround myself with love, face this cancer head-on and say a long-awaited farewell to fear.
I’ve learned we are all stronger than we think. There is power in truth. I’ve forgiven myself for not being perfect. I’m learning how to trust myself, be kind to myself and love myself. My goal is to live. Now. In this moment. And breathe.
In essence, I met one of my goals. I punched fear in the face - and I continue to do so every time it rears its ugly head, because I am no longer afraid.
Much love,
~Shevawn
Is Mutilation Really the Answer?
On Tuesday (7/26), I learned the results of my most recent lab test: the Oncotype Dx. It’s a relatively new genetic test that predicts the likelihood that cancer will come back (somewhere else) within 10 years & how well my particular cancer will respond to chemo. My score is 16 & there’s a 10% chance cancer will return within the next 10 years. I don’t know yet if chemo will be effective - I’ll discuss that with my oncologist on Tuesday (8/2). After hearing these results, as usual, I hit the internet & tried to learn everything I could about the test & my score.
Unfortunately, it’s nearly impossible to find another case identical to mine to predict what my treatments might be. Instead, what I found were stories of women choosing to remove their breasts or ovaries or both in an attempt to win the war against cancer. I suddenly found myself in tears, grieving for these women and furious at the same time.
In what world does it make sense that women are forced to choose between life and self-mutilation?
Much love,
~Shevawn
Because that’s how I see it - opting for mastectomies & hysterectomies, letting go of all that physically defines us as women. Especially in a superficial, sex-obsessed society such as ours. Are men ever forced to choose between their “man parts” and their lives? How often do men choose to have their testicles removed as a preventative measure? I know. It’s not the same. It’s just the way it is. It’s just women’s bad luck. Breast cancer is linked to ovarian cancer. Our ovaries produce hormones that feed breast cancer. Still. It doesn’t seem fair. And it makes me sad.
Sad that women are forced to make these horrible choices. I don’t want to have to choose. And I don’t want to have to mutilate my body any more. I intend to fight & I will win, but I shouldn’t have to cut off my body parts to do so.
Bikram Yoga - My Lifeline
4 weeks ago today I was told I have cancer.
3 weeks ago I had surgery to remove it & to test my lymph nodes.
Today I returned to my “religion” & the only exercise I’ll ever need: Bikram Yoga.
My last class was 6/11.
To say the least, I was nervous to go back. Though I needed to be there, I knew it would be an emotional return; and, I worried about what my instructors & classmates would think:
- would they notice the scar under my arm?
- would they judge me for not doing all the postures 100%?
- would those who already know look at me or treat me differently?
- what if I start crying??????
As I pulled into the parking lot with tears streaming down my face, I sent a text message to my friend & owner of the Bikram studio, expressing some of my fears. She responded with words of encouragement & reminded me to believe in my strength. She also told me there was a gift waiting on me at the studio.
When I walked to the counter to check-in, I was greeted by my instructor who told me that the studio had purchased 10 classes for me. I cannot express how amazing this gift is and what it means to me.
After my first few classes, I declared Bikram Yoga as my new religion. Physically, it’s the most challenging activity I’ve ever done. Mentally, it slows me down, clears my mind and makes room for what’s most important - me. It forces me to focus on myself: my breathing and my body. That’s all there really is to life… breathing.
I did it!!!
I stayed the entire 90 minutes in the 105+ degree room. I did most of the 26 postures. I took breaks when I needed to. And, most importantly, I felt myself change - from the inside. I meditated on my spirit and my health & I visualized myself literally “blowing the cancer out” during the final breathing exercises.
Thanks again, Jodi & team. :)
The “Good” Things About Cancer
For the record, there is NOTHING good about cancer. Don’t let anyone convince you otherwise. That being said, having cancer certainly changes your perspective on all kinds of things and forces you to appreciate the little things in a whole new way.
I’m going to start this list now and add to it regularly. The “Good” about cancer:
- My mind, body & spirit are forever changed - making me an evolved woman.
- I eat an insanely healthy diet, including organic veggies/fruits, vitamins, supplements, immune-boosting herbal teas, beet juice, carrot juice, wheat grass, TONS of water & even nutritional yeast. (I know. It’s intense.)
- I actually WANT to exercise every day.
- I appreciate washing my hair.
- I find it much easier to prioritize the important stuff.
- I appreciate cleaning because it’s good for my arm & chest post-op.
- I enjoy dressing up more to prove I’m still ok. (Just because I have cancer doesn’t mean I’m sick, frail or dying.)
- I’m growing stronger each & every day.
- My friends (and even acquaintances) are SO nice!
- More time off work = more time to spend with family, friends & on myself.
- I’m grateful for the outrageous insurance premium I pay each month.
- I have quickly learned how to NOT sweat the small stuff anymore. (HUGE!)
- 10 free Bikram Yoga classes. WOO HOO!!
Thank You Notes
It’s been a while since I needed to write multiple thank you notes. I worked on several last week, with more still to do. I want to create a page where I can thank everyone who reaches out to me, who loves me and supports me in every way imaginable. (Stay tuned for new “page”)
I cannot thank you all enough. There aren’t words to describe how much you all mean to me & how much you help me.
This is my initial list - and it’s only been 3 weeks:
- Mom for EVERYTHING in the world.
- Shawn David & Debbie for letting Hayden & me stay with you after my diagnosis & after surgery, letting my friends stop by freely, cooking for us, attending doctor appointments with me, taking Hayden to Myrtle Beach and for sharing my fears.
- Heather G. for (again) accompanying me to/from surgery, for my card and fresh-baked chocolate chip cookies, for my newest musical addiction: Adele, for cleaning my house, for distracting me when I need it, for your positive thoughts and for being the perfect best friend.
- Tanzi for your company, your laughter, for sharing your mom’s battle and your personal knowledge with me, for being my friend.
- Ericka for the roses, your amazingly decadent truffles, bourbon balls, meat balls, cheese spread, the paper plates, napkins, plastic forks (HOW THOUGHTFUL!!) and your willingness to do anything for me at any moment.
- Jamie D. for your heartfelt concern & thoughtful card.
- Dr. Draper, Kathy, Tracy, Toni, Meredith & Leslie for the bright & beautiful flowers and thoughtful card.
- Gretchen, Jeff, Brian & Alan for the largest & most beautiful lilies I have EVER seen (3 Toads Farm). And Gretchen for checking on me regularly.
- Rachel for your delicious empanadas, homemade mac & cheese and homemade soup.
- Adam for delivering Rachel’s food on your scooter, having dinner with us and playing sticks with Hayden, Shawn David & Debbie.
- Claudia for being so much more than my boss.
- VOA for thinking of me and treating me like a person first.
- Amanda - for sharing your story with me, for sharing your fears and struggles with me, helping me feel not-so-alone and for understanding my emotional roller coaster.
- Hannah for the books, vitamins, homeopathic remedies, peaceful hospitality, distraction, love & support.
- Erika for the organic fruit, superfood salad, healthy dinner, wine, girl-time and 12 yr friendship.
- Susan & family for the beautiful charm bracelet and touching poem.
- Matt for mowing my lawn, bringing dinner and offering your support.
- Keith D. for always making me laugh & for letting me cry.
- Jamie C. for listening to me and knowing what I need to hear - for 20+ yrs.
- Eric for not treating me differently, for continuing to push me & challenge me, for distracting me & reminding me that I’m still a ‘normal’ woman.
- My friends who don’t live nearby, but still find ways to support me & love me: Drew (Nashville), Kendell (L’ville), Heather M-P (GA), Jenny V-B (GA), Tim (St. Louis), Cynthia (Hazard, Ky.)
- Shevawn M. for reaching out to me & offering much-needed comfort.
- John P. for supporting me & capturing me in the shadows (and light).
- Dave L. for your concern, thoughts, advice and humor.
- My FB friends who lift me up each day (you know who you are).
- Those who stepped up & stepped in now that I have to take a back seat in all of my volunteer activities.
- Family, friends & even strangers who offered your thoughts & prayers.
- Friends & neighbors who have offered their support - whatever I might need.
- Dr. Marta Kenney - I can’t express how grateful & blessed I am to know you.
- Dr. Patrick McGrath - as terrible as this is, I am so lucky to have you on my team.
Results Day - or So I Thought
July 13th - the day I had waited more than two weeks for. The day I thought I would get the “full” picture and would learn what to expect in the coming months. But, no. What I learned is that cancer forces you to be patient. A virtue I’ve never mastered.
I was supposed to meet with my surgical oncologist (McGrath) at 2:30 to check my incisions, make sure I was healing okay & review the pathology report from surgery, which would provide me with “all the answers.”
Ummm… not exactly.
We didn’t see Dr. McGrath until 4pm. Pre-cancer, I would’ve raised fourteen kinds of hell about the hour & a half delay. But it’s difficult to get mad at the doctor who’s responsible for saving my life thus far. And, it’s impossible to get mad at the fact he’s running behind - knowing he spends his day with others fighting this battle. Other patients who are also in shock, who are also scared and who are also overwhelmed by the information overload. If everyone he saw that day brought a list of questions as lengthy as mine, I would fully expect him to run behind.
The Results:
My tumor was 1.4cm.The cancer is estrogen & progesterone receptor (ER & PR) positive. The margins were clear. My sentinel node & one other lymph node removed during surgery tested negative for cancer cells. I have Stage 1, Grade 2 lobular carcinoma. The “type” of cancer I have is T1c.
If you’re like I was pre-cancer, you have no idea what any of that jargon means. So, I’ll explain the best I can, based on what I’ve learned so far. All in all, as far as breast cancer goes, my initial indicators are good. I have the “best” kind of breast cancer (hormone positive) - which means that estrogen fuels the cancer & there are drugs available to block estrogen to prevent recurrence. I also caught the cancer early (tumor only 1.4cm), so my outlook for survival is very high (98% likelihood I will remain cancer free for 5 years). Dr. McGrath got “all” of the cancer out during surgery (clear margins) & the cancer hasn’t spread to other parts of my body, based on the lymph node tests (VERY GOOD). Stage 1 means I have cancer, a tumor smaller than 2cm and it hasn’t spread to lymph nodes. Grade 2 is how well defined the cells were - on a scale of 1-3. Instead of starting in a breast duct (like most breast cancers), mine started in a breast lobe - thus the type. And… I think T1c just means the tumor is larger than 1cm, but smaller than 2cm.
So, that’s the technical, pathology/biology stuff. Now, what I expected next was for Dr. McGrath to tell me what he would recommend as follow-up treatment, based on this data. But, wait… there’s ANOTHER test that needs to be done: oncotype. Another pathology test that looks at 21 different factors & scores the cancer on some kind of scale. Based on that score, the medical oncologist (another doctor) will determine if I should get chemo therapy, radiation and anti-estrogen medication (Tamoxifen) or if I should get radiation and medication only.
Despite all the “good news” and the minimally invasive nature of my cancer, because I’m so young, chemo is still on the table. If I were 70, Tamoxifen would be standard protocol. If I were in my 50s or 60s, radiation + Tamoxifen would be standard. But because cancer is more aggressive in younger people and because I have a longer lifespan ahead of me, - hopefully - the treatments tend to be more aggressive as well to ensure ALL the cancer is wiped out. (Despite surgery, clear margins, etc. - microscopic cells can be left behind & could spread to cause additional tumors. Thus all the additional treatment.)
So… Dr. McGrath will order the oncotype test, which will take another 2 weeks. I’ll then meet with the medical oncologist (Dr. Harper) to discuss those results and my treatment options on August 2nd. .
Until then, I’ll keep practicing patience.
Pre-Cancer to-do List
It’s so bizarre - I was drafting a new note on the notepad app on my phone & noticed the to-do list I drafted the day before my mammogram. This list reflects my naivete to assume I would be just fine…
- Bank
- Mtg w/ Claudia - 11am
- Finalize vacation budget
- Call KFB about renting car & insurance info
- Mammogram - 2pm
- Reserve rental car for Tues
- Get racquet & clothes from Heather
- Tennis lesson - 6:30pm
- Pack
Obviously - I didn’t make it to my tennis lesson, nor did I get my things from Heather. I did find out that my personal car insurance transfers with me when I rent a car, however. (Good to know for the future I suppose…)
This may not be of much interest to anyone else, but I can’t imagine EVER taking another such diagnostic test so lightly & I certainly won’t plan a vacation immediately after!
Isn’t it amazing (or cruel) how quickly, drastically &
permanently your life can change?
From Shock to Grief to Anger
I suppose it was only a matter of time, right? After the shock wears off, the visitors leave & the food starts to mold. I’m home alone, trying to keep busy. Reading the stack of breast cancer books I picked up at the library a few days ago. Catching up on emails & bills I’ve neglected of late. Still, it’s the silence. No TV. No CD. No ipod. No phone calls. No Hayden. Just me. And I can’t stop my mind from going “there.” Where I knew I would end up some day (sooner rather than later). The place I’ve tried to avoid every. single. day. Since I heard the news.
The pity party.
90% of breast biopsies are benign. Not mine. Only 12% of women will develop my kind of cancer (invasive lobular carcinoma). I am a lucky member of this small number. 93% of breast cancer occurs in women over 40. At 37, I’m again a member of the few 7%.
So, the questions are obvious… Why me? Why now? What did I do to deserve this? And the outrage: I don’t need this! I didn’t ask for this! This is SO UNFAIR! I have too much to do! I have a 9 year-old son to raise! I don’t want to deal with this! I don’t want to learn everything there is to know about breast cancer and cancer treatments! I eat a healthy diet! I exercise. I’ve never been overweight! HOW DID THIS HAPPEN!?
And, of course there are no obvious answers. There is nothing that anyone can say to make sense of this diagnosis or to make me feel better about it. There are no answers online nor in any of the books I’ve collected. Even other women who’ve lived through it - every story is different and it’s never fair. It never makes sense for anyone. No one can guarantee a happy ending. No one can promise a smooth ride. Yet, still I wish someone could make it all go away.
I wish someone could tell me it’s all going to be okay - and mean it. I wish my family, my friends & Hayden wouldn’t have to worry about losing me. And, I wish I didn’t need so much. I am a strong person. I pride myself on being able to take care of myself with little help from anyone else. So, it’s hard. It sucks. I hate it.
I hate being needy. I hate feeling alone. I hate depending on others. I hate feeling helpless. I hate asking for help. I hate being sad. I hate not knowing what will happen next.
