Posts Tagged ‘side effects’
Losing hair in an already difficult situation is like rubbing salt in an open wound. As if struggling to survive each day through treatments, medications, and poisonous elixirs isn’t enough, going through it bald is the proverbial cherry on top.
When I first lost my hair, I was unsure about venturing out into the public without something covering my smooth, hairless scalp. I remember the first time I stepped out of the house sporting my new look. As freeing as it felt, I also noticed the amount of unwanted stares I began to receive. The questions, curiosities, and expressions of pity in the eyes of strangers were tangible. I felt uncomfortable and embarrassed, but most of all, I was vulnerable. At times I wanted to boldly announce, “I have cancer, alright? Stop staring at me!”
I’ve been baldalicious for the greater part of two years, and have now learned to view it differently than I did in the beginning. My perspective has changed and a pride has emerged in the once desolate space of vulnerability. I am proud to be bald because being bald means I am a survivor. Being bald means I am still here. Still fighting. Still alive! Instead of viewing myself as a patient, I view myself as a strong warrior. Now, when out in public without a wig, I walk with my head high. I have nothing to be embarrassed about. Nothing to hide.
One month after my final chemotherapy treatment, I developed a longing to document my beautiful baldness. As illustrated as my journey has been, there was one thing missing — a gallery highlighting my bald head. I wanted my badge of honor on display, in a way that highlighted the fierce survivorship that I so often feel.
As usual, God’s timing is always perfect; Recently I was invited to be the subject in a photo shoot. After discussing my vision for the session, Kimberly met my husband and I at a park and we got to work. I was inspired to showcase the beauty in baldness, and brought along a headpiece that I put together. This photo shoot was such a special, intimate, and celebratory moment in time. Kimberly is a phenomenal photographer, warm and friendly face, and develops an atmosphere of comfort that is so needed in a shoot like this one. What she produced stunned me. She captured my vision to a “t,” and I will forever be grateful to have visual representations of the beauty in my baldness. I hope you enjoy them as much as I do.
Bald should be celebrated, not hidden away in embarrassment. If you are bald from the effects of your courageous fight through cancer, embrace it! It is your badge of honor. You are beautiful! After all, we are survivors … our bald heads say so.
Isaiah 12:5 (MSG)
“Sing praise-songs to God. He’s done it all! Let the whole earth know what he’s done!”
PHOTO CREDIT: KIMBERLY MITISKA PHOTOGRAPHY
(As appeared in The Huffington Post on 3/26/2014)
Yesterday, I came across an article. It’s a story that gripped me and had me feeling both triumphantly exuberant and downright disappointed. This story is about a little girl who has lost her hair in her ongoing fight against cancer, her friend who decided to stand beside her, and a school who punished them for it. The school chose to send the friend home, because her shaved head violated school dress code policy.
Delaney Clements is a strong 11-year-old girl fighting neuroblastoma, a childhood cancer that develops in nerve cells. Kamryn Renfro is her 9-year-old friend who clearly has a heart of gold and more character than most at her age. Due to her chemotherapy treatments, Delaney has lost her hair. She is baldalicious and exudes such joy with her smile. Recently, Kamryn chose to shave her head as a way to stand by her friend in support. As a way to offer encouragement and to let Delaney know she was not alone. Kamryn made the decision to support her friend, against all odds and no matter the sacrifice.
This act of bravery from such a young girl is extraordinary. How many of us can say that we would do the same?
What happened next left me feeling disappointed and shocked. The school felt that Kamryn’s act of kindness, friendship, and support went against their dress code policy. They informed Kamryn’s family that she would not be allowed to attend school until her hair grew back, or until she arrived wearing a wig. Apparently, her bald head distracted other students. However, was it a negative distraction? I don’t think so. If anything, their fellow peers were given a rare opportunity to see what love really is. This act of solidarity could have been used as a teaching moment. A lesson that could not be explained with flash cards or times tables.
Our world needs to be distracted more often. Our eyes need to be taken away from the meaningless and be redirected to the meaningful. Sometimes lessons cannot be taught through a textbook.
The media has shared this story over and over again, yet the core message seems to get muddled. The debate of whether or not hair should matter in school should not be the focus. This message is not about a girl with a shaved head. This message is about what one girl did for her friend. In an interview, Kamryn stated, “It felt like the right thing to do.” And Delaney responded by saying, “It made me feel very special and that I’m not alone.”
Having lost my hair several times over from the slew of cancer treatments I’ve received over the last two years, I understand what it feels like to be bald. It can be isolating and scary. Many don’t realize the amount of value we place on our hair until we no longer have it. Being bald has often left me feeling vulnerable and different. Being bald is a physical reminder of the battle for survival. I am nearly 20 years older than Delaney, and can’t even fathom what she has had to go through at such a young age.
By punishing Kamryn for her act of kindness, this school has sent a large message. While I understand the importance of rules and regulations in schools, the administration carelessly looked over the benefits of this situation, and reacted improperly. Children should not be punished for doing the right thing. We should instill values into our youth, so that when they grow older, they will treat others with compassion and care. Do we want our children to remember moments like this as an example of what is not allowed, or rather an example of what it means to love? Acts of kindness should not be rebuked.
What Kamryn did for Delaney should not be punished. What she did should be praised. She responded to an urging of compassion in her heart by extending support to another. She stepped out in courage and bravery to do what not many would. She symbolically held her friend’s hand and let her know she was not alone. And I applaud her.
Thank you Kamryn for rallying by your friend and showing her support and encouragement. Thank you for showing her that she is not alone and doesn’t have to be the only one who looks different. Thank you for your courageous spirit and your brave response.
Thank you, Delaney, for your strength and courage. Thank you for showing the world that bald is beautiful. Thank you for inspiring those of us who are fellow fighters and survivors. Thank you for your contagious smile and bravery.
Kamryn and Delaney have defined what courage, friendship, and bravery really mean. Today, I stand with Delaney and Kamryn, and urge you to do the same.
Bald is beautiful.
Update: After all the media attention on the story, the school has since reversed its decision.
Those of us who are strong and able in the faith need to step in and lend a hand to those who falter, and not just do what is most convenient for us. Strength is for service, not status. Each one of us needs to look after the good of the people around us, asking ourselves, “How can I help?”
There comes a moment in every cancer survivors life when we realize our hair has returned. My moment was this morning.
After answering emails, continuing the laundry, and catching up on Real Housewives (a guilty pleasure … forgive me), I stepped into the shower. Over the course of these past two years, there are more times than I can recall when I’ve been without hair, and a few fleeting occasions when my locks have made a debut. This past season has been spent as hairless as a naked mole rat. Therefore, showers are quick. It never ceases to amaze my husband how speedily I can take a shower. You’d think we were on water rations or something.
“Are you sure you’re done? That was fast!”
“Yes, I’m sure. I have no hair. Remember? All I have to do is wash my body.”
And it’s the truth. I can get in and out of a shower within 5 minutes. I have no legs to shave, no hair to shampoo and condition. My sole duty is to get clean. I’d be lying to say I didn’t enjoy not having to time my morning ritual around how long my shower will take. Oh, the benefits of being follicularly challenged!
As I stepped out of the shower, dried off, and stepped into my wardrobe for the day, I noticed a shadow under my arms. It caused me great pause, as I was unsure what was lurking underneath my biceps. Lifting my hand to the sky, I peered at my underarm. What did I spy with my little eye? Hair! The softest hint had sprouted from an area that had been naked for so long. My first thought was, “Wow. It’s back. I’m officially done with treatment. Now I need to brush up on my shaving skills!”
Hair is a silly little thing we often take for granted. Women are constantly irritated with their manes — fussing, fixing and complaining that it’s not long enough, not short enough, not curly enough, or not straight enough. We buy the latest and greatest products to manipulate it to do things only God Himself could accomplish. We specifically tell our stylists we only want our dead-ends trimmed, and no length to be removed. We try new styles, new cuts, and experiment with how much volume we can achieve. We wax our bodies from head to toe – plucking, primping, and priming our skin to be as smooth as possible. No matter what woman I talk to, we all have a never-ending love-hate relationship with our tresses.
Every time I’ve lost my hair has been different. My first season through treatment two years ago took everything but my eyebrows and eyelashes. My second season, I lost nearly everything right away, but still managed to have two spots on my scalp that maintained about twenty hairs each. As aforementioned, this season I remind myself of a naked mole rat. Bald, pale, and if not for my hot flashes, cold. Because of the changing of each season, I’m never quite sure what to expect my locks to do. Will they all grow back in at the same time? Will my hair be thicker and more luxurious? Will its color and texture change?
The hair on my head has slowly but surely begun to make its debut. About three weeks ago, I noticed a little garden growing up there. Tiny sprouts had begun to make their voyage above the surface, and I was elated. Hair continues to be a reminder that I am no longer in treatment, and that brings me a happiness that I can’t even begin to describe. The second I spot newly established tresses, I make certain that I shampoo and condition it every single day. It’s hair. No matter that it’s one tenth of an inch long, it deserves to be treated as though it reaches my shoulders. I can officially say my showers have expanded from around five minutes to nearly seven.
After discovering what my underarms had been hiding from me, I began to hunt for more. This hair hunting expedition had me laughing to myself, alone in my bathroom. The joy that came from finding more and more pooled up in me, until it overwhelmed my thoughts with the acknowledgement, that I, once again am cancer-free. I looked closely at my face and noticed itty bitty strands making an appearance at my brow line. My lashes have even joined the party and are tap dancing across the edges of my eyelids. Soon, I was touching my legs, inspecting every square inch, gleefully observing hundreds of hairs revealing themselves to me.
I officially have hair again. It’s not much, but it’s here. It’s back. And it has returned with a vengeance. I remember the first time my hair reappeared. My poor, poor legs. It was as if I was a newly pubescent teenager, all over again. Nicks and scratches up and down each leg, and quite a few bandaids to mask my amateur attempt at shaving. I’m excited to brush up on my shaving skills once again, and pretty soon, I’ll go from novice to professional. I’m praying this hair is here to stay, and that it will forever take the place of the one who tried to steal it away.
I suppose it’s time to stock up on razors. I anticipate my shower to be much longer tomorrow, as I’ve got some shaving to do. For today, though, I will enjoy these beautiful reminders that I am alive and cancer-free.
6.5 weeks from last chemotherapy (3/14)
Isaiah 43:18-21 (MSG)
“Forget about what’s happened; don’t keep going over old history. Be alert, be present. I’m about to do something brand-new. It’s bursting out! Don’t you see it? There it is! I’m making a road through the desert, rivers in the badlands.”
Sometimes, as a cancer patient, you want to blend in with the crowd. Blend in with those around you who have hair. Because, after all, being bald attracts attention and unwanted stares. Being bald equates sickness. And no matter how sick I feel, I don’t always want to look it. Sometimes, it’s hard to feel like a woman when the features that amplify your femininity fade away.
No makeup. Little hair. (May 2013)
After being diagnosed with cancer in January of 2012 and learning I would lose all of my hair, I was devastated. I had just reached the point where I was obsessed with my locks, so facing the reality that they would be gone in a matter of weeks was calamitous. That was 14 months ago, and since then, I have lost my hair a few more times. But, never once had I grieved my eyebrows or eyelashes. In my second season of treatment, my hair loss became more of an inconvenience rather than devastation. I had gotten pretty used to it. However, this time around, chemo decided to take a little more hair with it. This time, I lost all of my locks… as usual, the new curls on my head and the hair on my legs and arms. But, this season, even my eyebrows and eyelashes disappeared. Everything. The only hairs I hadn’t been used to saying goodbye to were my brows and lashes, and boy did I realize what an adjustment that would be. I had never understood how much I had taken those short little hairs for granted.
What a difference brows and lashes make! (May 2013)
As a woman, I like to feel beautiful. I like being confident in the way I appear to the world. I had always thought if I were to lose my lashes and brows that I would look like an alien. Or even a hairless rat. Or maybe a hairless rat-like alien. Regardless, I had thought that if my brows and lashes were to fade away, my beauty would soon then follow. After all, I had never had to draw my brows on, and only wore false lashes on few occasions. What was I to do?
I have an aversion to having all eyes on me. I don’t like all the attention. And, I don’t like being the sick girl. The cancer patient. Because of this, I’ve become somewhat of a chameleon. Not many people have been able to see me without my “mask” on. And frankly, because I appear to be healthy, it’s hard for others to see the face of sickness. When I’m made-up, cancer doesn’t shine through. And while that’s the point, it’s necessary to see what the “before” looks like.
Many women share that they don’t feel femininely beautiful after hair loss. I get that. I feel that way, too. But there is hope. And thank the Lord for makeup! Gifted with cosmetic creativity, I have been able to gather my tools and tricks and go to work on the canvas of my face. I am here to testify that as a woman diagnosed with cancer or for those suffering hair loss for other reasons, you can still be beautiful! Losing your hair does not mean you have to look vastly different from your prior furry self. It’ll take effort and creativity, but it is possible.
Makeup complete and hair on! (May 2013)
Cancer tried to take away a lot. And even though it has tried to strip me of my appearance, I will not let it. No hair, don’t care. I’m beautiful, regardless.
And so are you.
Isaiah 40:8 (ESV)
“The grass withers, the flower fades, but the word of our God will stand forever.”
Man-on-pause is happening in our household. Hot flashes, night sweats, irritability. Yes, man-on-pause is definitely here. Of course, I’m referring to the dreaded menopause, but my husband renamed it for obvious reasons. Never did I imagine I would be going through menopause at 26 years old. In fact, I didn’t even give this hormonal life-change much thought. After all, I’m in my twenties, not fifties or sixties.
Trying not to sweat in the hot sun! (March 2013)
After my radical hysterectomy in February of 2012, I experienced a very small number of hot flashes. I didn’t even want to refer to them as full-on hot flashes, and just called them “hot flushes,” as only my face would get very flush. I wasn’t tearing my clothes off in desperation for cooler temperatures. I wasn’t wiping away sweat beads from my brow or upper lip. I wasn’t snapping at my husband for no apparent reason. Then again, I still had two ovaries. And they must have been producing hormones… even slightly. However, after my most recent surgery where the softball-sized monster was found gnawing on my left ovary, it had to go. Today I am left with one ovary on my right side, and it’s starting to give up. This leaves me pissed off, cursing, and sweating. Oh, the dreaded menopause.
Never did I imagine I would find myself typing in the search term “natural menopausal remedies,” nor did I dream of perusing forums filled to the brim with women in their sixties sharing about their experiences. Never did I imagine I would be asking my mother and friends’ mothers if they were tearing their jackets off in the midst of a blizzard just to cool down, like I was. I never thought I would find myself walking through the aisles of a natural grocery store, desperately hunting down magical pills that are claimed to erase most of these symptoms. Never did I think I would apply makeup only to sweat it off mid-application. I never dreamt of watching commercials geared at older menopausal women and finding that we are more alike than not. Never did I think I would open the freezer door and stick my head in. Never. But obviously, I’m not living a “typical” life of a twenty-something woman.
Menopause sucks. If you’ve been through it, you know that, and if you haven’t… well, lucky you. Try to be young as long as you can. Enjoy the days where you can sit under the sun and not turn into a maniacal sweat factory. Enjoy the moments when you can lie in bed and snuggle up to your husband without instantaneously laying in a pool of perspiration. Enjoy being intimate. Seriously. Menopause tries it’s darndest to make you cringe at the thought of sex, as your lady parts don’t work as they used to. (Sorry to the men who don’t want to read about their daughter/sister/granddaughter/friend in that way. It’s the truth. And frankly, you’ve either had a wife go through it, or you will in the future. Better to learn early!) Hot flashes, irritability, dry lady parts, night sweats. Oh, and the infamous flabby stomach. That last one could be due to having two major lower abdominal surgeries, but I’d like to put the blame on my arch-nemesis, Man-on-pause.
Filled-in brows, false lashes, menopausal, yet still Baldalicious. (March 2013)
Lately, I’m pissed, irritated, and annoyed. I feel like my femininity is waning. I’m a girly-girl. I adore makeup, clothes, nail polish, and hairspray. I freak out at the sight of spiders. I would prefer to lay on a beach with a margarita in hand, than lay in a sleeping bag under a tent on a camping trip. And I hate to sweat. It is what it is, and I like it that way. But being bald with barely there eyelashes and brows, twenty extra pounds clinging on, the gamut of menopausal symptoms, and the latest nasty nails, it’s hard to feel girly. I overcompensate with a wig, false eyelashes, nail polish, and makeup a lot of the time. Without all of that, I don’t feel feminine on the outside. I’m ready for my outward body to reflect what’s on the inside again. Girl. Woman. Pretty. ME.
I had been clinging on to one last thing that was truly, naturally, and 100% mine- my fingernails. This past week, I grieved the loss of them, as well. If you know me, I like to keep my nails looking attractive. They are almost always lacquered in color, and glitter makes a frequent appearance. This past week as I was removing the most recent polish, I noticed my nails looked odd. In fact, after they were free and clear of any color, their natural hue had taken on a completely different look. Purples, blues, whites, yellows, and even greens were peering back at me. What? Chemo had already taken my hair, dispensed weight in unwanted areas, and made me feel like crap. And now, it’s decided to take my nails, as well. Nearly all of my fingernails are almost halfway separated from the nail bed. They are bruised and ugly. And the worst part is: I can’t cover them up. Under doctors orders and the advice of many friends who have experienced a similar trial, I have to keep them clean and polish-free. Oh joy. I can’t even cover them up. So here I am, bald and pissed… and sweating.
Chemo nails. Gross. (March 2013)
It’s a good thing chemotherapy does more than tear my outward appearance up. At least it’s tearing up my insides and annihilating cancer, as well. If it weren’t, I can assure you, we would have broken up by now. Although I have a love/hate relationship with chemo cocktails, this year-long relationship has proven to be beneficial to my survival. And as much as I loathe every little side effect that I have experienced, I am grateful to be alive. I will do whatever it takes to live. At the end of the day, I’m still here, and that’s all that matters. And one more thing, the little magical pills that I mentioned earlier, are actually working… in more ways than one!
But, dammit. I still hate menopause.
Proverbs 31:30 (MSG Version)
“Charm can mislead and beauty soon fades. The woman to be admired and praised is the woman who lives in the Fear-of-God.”
Some side effects of chemotherapy aren’t textbook. It’s well-known that I have a rare diagnosis with a rare recurrence, so why shouldn’t I have rare side effects? Bring ‘em on.
The beginning signs of Hand and Foot Syndrome on my palm. (January 2013)
As I am beginning to experience a handful of side effects in this season of treatment, I am reminded of the initial meeting we had with my General Oncologist. We learned that patients can go through a gamut of side effects (duh), but that there are only a handful of rare ones that could plague me during treatment. One of these mentioned was drippy eyes. My doctor shared that because of the drugs being administered, sometimes patients will look as though they are crying, and will consistently dab at their eyes with tissue. I find it weird to remember such a small detail in the midst of such a large conversation, but clearly God was preparing me for what was to come. Like other patients, the specific chemo drug that I am now receiving is tricking my tear ducts into over producing tears. Therefore, it appears that I am an emotional wreck at all times of the day. Yes, I may be tipping the levels into menopause because of my surgeries and radiation, but I assure you, I am emotionally stable…or so I think.
This particular side effect is quite the annoyance. My eyes leak. They drip. They pour out tears. And if I don’t catch them before they take the plunge onto my cheeks, putting on makeup in the morning is quite the joke. “Crying” all day does offer humor, though. For instance, being the procrastinator that I sometimes can be, I waited until the day before Valentines to get Matt a few cards. Tissues in hand, I walked into Hallmark. It became abundantly obvious that I was not the only procrastinator for this holiday as swarms of people flooded the aisles. Great. I could only imagine what was to come. As I politely shoved my way through to the section I needed to peruse, my anxieties began to creep up. After all, there I was, sniffling from allergies and dabbing away at the tears that continued to pour from my eyes. While I can admit, Hallmark does have some touching cards, I am not one to publicly weep over them. Needless to say, I was embarrassed. The girl who was crying over Hallmark cards; I’m sure I was the topic of many dinner conversations. And sadly, that’s not the end of it. As I was taking multitasking to another level by wiping my tears, sniffling, and reading sentimental words, the anxieties sent me into a full-blown hot flash. Oh yes, friends. Crying, sniffling, and sweating. I began to curse my fellow procrastinators in my head. I was flustered, embarrassed, and wanted to leave immediately. By a supernatural miracle, I found cards I liked, and soon was able to depart from the Hallmark Hell. Looking back, this is quite hilarious. Go ahead, picture it in your head. I invite you to laugh.
As if having to dry my eyes at every waking moment isn’t enough, my skin has turned on me, as well. For whatever reason, it would rather fall off. Apparently, I am no longer fun to be attached to. Welcome, Hand and Foot Syndrome. It’s a real thing, folks. And, according to my nurses and doctors, the fact that I am plagued with it is……Rare. Apparently, they have never seen a patient undergoing my treatment regimen experience this syndrome as a side effect. There’s a first for everything, I suppose! I get to be lucky number one. Oh joy. So that I don’t have to go into the scientific depths of explanation, feel free to read the details about Hand and Foot Syndrome HERE. Essentially, the chemo drugs are leaking out of my capillaries and burning the surrounding tissues. The surrounding tissues happen to be my hands and feet. It is the most painful side effect I have ever experienced. Prescription pain medicine doesn’t put a dent in the misery.
Hand and Foot Syndrome on the top of my hands. (February 2013)
A couple of days after each chemotherapy session, the cycle begins again. My hands (tops, palms, and fingers) and soles of my feet become swollen, tight, and dramatically red (sometimes even purple). It feels as though I placed these limbs over a scorching hot fire and waited. Walking becomes difficult and painful. Gripping anything is a task. And for as long as they are affected, daily routines are put on hold. My heels brushing the sheets in our bed even causes discomfort. Bending my knuckles, picking up anything, wearing shoes, and even washing my face is a painful chore. I must keep my hands and feet moisturized with a heavy cream and topical steroid 24/7. About two weeks later, the swelling, tightness, and redness eases and then blisters form. Which, in turn, leads to the skin coming off. Therefore, as gross as it is, I have been peeling skin off my hands for a while now. The other day, I made the mistake of removing a giant blister off my heel. With chemo brain fogging my thought process, I didn’t think about how it would feel to walk on raw skin. Needless to say, I soon found out. And I still walk with a slight limp in my step trying to avoid pressure on my sensitive and raw left heel.
Usually I can feel when the chemo has made its full course through my body and is near the end of its damaging rampage. Chemotherapy takes months to fully be out of your body, but the “hard part” wears off a little by the third week. Just in time to get another dose! Of course. So, today my tears aren’t as overwhelming, and my HFS has eased. The peeling continues, but the skin has already died, so it’s not painful to remove it from my hands. My nauseous feeling has dissipated and I can lead a fairly “normal” life four to seven days before my next treatment.
And the peeling begins! (February 2013)
The sloughing off of my old skin is similar to the birth of a new day and a new future. My old skin cells are being wiped away, and my new cells are forming. My old body is being pushed aside, and my future is being born. No more cancer. No more pain. Only a healthy new day. A healthy new life. Sometimes God won’t bring new into your life, until you remove the old crap. He won’t place new on top of old either, and therefore the old must be wiped away completely. My skin was the old crap. And through this journey, I am becoming more and more ready for what God wants to bless me with in the future. I commit to believing in favor. I believe that I will be healed. As it says in Colossians, I am removing my old garment and awaiting my new wardrobe. I am throwing away my sick body, in preparations for my healthy one. Yet, I must be in this storm to fully be refined. Believe me, I wish we didn’t have to suffer trials and tribulations to get to the good stuff. But through these trials, I am thankful for the refining work He is doing in me and through me. Today is a new day. I choose to move forward in power. So, be gone old skin… I’ve got better things coming!
Isaiah 61:1-7 (The Message)
“The Spirit of God, The Master, is on me because God anointed me. He sent me to preach good news to the poor, heal the heartbroken, announce freedom to all captives, pardon all prisoners. God sent me to announce the year of his grace—a celebration of God’s destruction of our enemies—and to comfort all who mourn, to care for the needs of all who mourn in Zion, give them bouquets of roses instead of ashes, messages of joy instead of news of doom, a praising heart instead of a languid spirit. Rename them “Oaks of Righteousness” planted by God to display his glory. They’ll rebuild the old ruins, raise a new city out of the wreckage. They’ll start over on the ruined cities, take the rubble left behind and make it new. You’ll hire outsiders to herd your flocks and foreigners to work your fields. But you’ll have the title “Priests of God,” honored as ministers of our God. You’ll feast on the bounty of nations, you’ll bask in their glory. Because you got a double dose of trouble and more than your share of contempt, your inheritance in the land will be doubled and your joy go on forever.”
Who ever said, “Third time’s a charm!”? What a load of crap. Okay, okay…maybe it’s just my situation. Losing my hair for the third time is so not charming. At least not to me. My husband has a different perspective, and while I understand and am grateful for his outlook, I still hate that I have to lose my locks again. In his words, “Seeing your hair fall out is a sign that the chemo is working in your body!” True, babe. Very true. Although I was
liking loving my short locks, I can’t argue with my husband’s perspective. It’s true. And it’s right. And yes, I am extremely thankful that my chemotherapy treatments are doing something.
Photos courtesy my husband, right before he shaved it off. Check out how long it got!
Rewind…Happy New Year and belated Merry Christmas! What a fabulous holiday it was. Following my first treatment, I prayed each day that I would feel good on Christmas, and lo and behold…I did; Hallelujah! Matt and I were able to fully enjoy time spent with each other and our family and friends, and cancer was not invited to any of the parties!
Last time I posted was a few days before Christmas, on my first day of this season of treatments. I was unsure what to expect with these new drugs and regimen, and was a little nervous on what side effects I would experience. Oh boy, did I experience the gamut! Before I get to the enticing details of rashes, nausea, and flu-like symptoms, let me update you on my proposed treatment schedule. This round of treatment will consist of a few different drugs. One type of chemotherapy combined with a “booster,” and a shot the following day. By “booster,” I’m referring to a drug that coincides and works well in promoting the effects of chemotherapy. In essence, it cuts off the blood vessels that cancer needs to survive. While I’m on board for that idea, I am apprehensive about the possible and rare side effects that this booster causes. “Rare” doesn’t mean much to me anymore… I have a “rare” cancer with a “rare” recurrence, and have already experienced “rare” side effects. Booya! In yo face, statistics.
I will receive chemo once every three weeks about six times. That is very different than my last schedule of three days in a row every three weeks surrounding six weeks of weekly chemo combined with daily radiation. (That was a mouthful and a LOT of treatments!) I am thankful that this regimen is so different. It allows me more time to recover and to have more good days. In fact, this first time on the new drugs, I only had one week of feeling awful, which has left me two weeks of feeling pretty great. Feeling good for two weeks is a blessing, folks.
Besides simply having to continue treatment, the biggest things I loathe are the shots I have to take after each and every chemotherapy session. These shots are similar to what I had to self-inject last time around. They help stimulate my white blood cell growth, however, they are slow-releasing. Therefore, I feel sick and gross for a longer period of time. I have developed a love/hate relationship with these injections. While they help increase my white blood cells, they really put a damper on my body and mood. I, however, am thankful that they exist, because without them I could not continue to receive chemotherapy.
Curls for days. January 2013.
If you haven’t already, buckle up. Here comes some truth. And it’s not going to be sugar-coated. I mean, come on… you know me by now, right?! I felt like utter shit after my first round of this new treatment. Ugh. Horrendous. Chemo itself already makes me feel awful, but combined with this new injection, I was bed-ridden for about four days. Most people enduring cancer treatments often find it hard to describe what they feel like after each cocktail, and I am no different. My best description is this: Imagine having the worst case of the flu. Complete with fever, stomach ache, diarrhea, and constipation (believe me, it’s possible). Add to that a grueling headache that won’t go away, severe body aches, and skin sensitivity. Mix in a weird and itchy rash on the tops of your hands. And, to top it off, throw in a semi-truck running over your hips, pelvis, and lower back. All that makes for a wonderful chemo-filled sundae topped with some Neulasta sprinkles. And no, I did not get run over by a semi, I was being descriptive. My husband will argue that it’s exaggerative, but I stick to “descriptive.” Needless to say, I felt dreadful, filthy, exhausted, lousy, horrendous, and gross. And like I’ve mentioned before, when I’m not feeling great physically, it takes everything in me to stay positive mentally. That first week, I truly felt defeated. There’s no other way to say it. My dad always tells me, “You’ve got to remind yourself that it will get better. You know that by now. If you can get through this week of feeling crappy, you will eventually feel good again!” He’s right, but damn, it’s hard to accept in the midst.
The good news is, Dad is right. It does get better, and it did. I began to feel better Christmas morning, and it has continued through today. Having good days really is a blessing. I have been able to cook, clean, and take care of my husband and our home. In addition, we’ve been able to enjoy time together and with family and friends. I am thankful for every good day that God gives me. Each good day allows me to fully enjoy the life that God has breathed into my body.
As we are all familiar with, my hair falls out when I receive chemotherapy. The fact that I am receiving a different drug does not change that. In fact, this time around, my hair began to fall out sooner than expected. Usually it takes two weeks (to the day) to fall out. This time it began to fall out a day before expected. I chose to take my husband’s perspective on this one and say, “Chemo must really be working!” Nevertheless, losing hair still sucks. For some reason I thought maybe this time would be no problem, but I was wrong. This is the third time that I have lost my hair, and again, third time is NOT a charm. It was almost harder this time than previously. Losing my hair is a visual reminder for me that I am actually fighting cancer again. When I had my new hair regrowth and was going through my first chemo session this time, I was still able to style my curls and was subconsciously fooling myself into believing, “I just go into the doctors every now and then.” Now that I am losing my hair I think, “I just go into the doctors every now and then… for chemotherapy to fight cancer.”
Check out that texture!
Frankly, I really began to love my short hair. I’ve heard many times that chemo can cause a person’s hair to grow back differently- texture, color, thickness. I can attest, this is true! Mine grew back extremely curly! Before I first lost my hair in March, it was slightly wavy. It could be straight, and would also hold a curl very well. However, it was processed (I wasn’t a natural blonde, believe it or not) and therefore most of the natural wave had been reduced. The hair that had begun to grow back since my last treatments in August was extremely thick and full of tight curls. It resembled the texture my hair was when I was a toddler, before hair color, flat irons, and blow dryers. Losing the locks that I loved was hard. Hair regrowth helped me see that I was really done with treatment, that I was cancer-free. Hair loss forces me to see that I am back in the game. While it’s easy to host a pity-party (which I’ve already done some), I am confident in beating this thing again. I’ve said it before, and I’ll say it again: I’d rather be alive and bald, than dead with incredible hair. And while we’re being Positive Polly, I’ll add… I truly adore my new blonde wig. It’s the first time that I’ve felt like me in a long time. It’s nice to look in the mirror and see my hot blonde self smiling back.
Ultimately, my hair will grow back. For now, I’m going to embrace being baldalicious and kick cancer’s ass for the second time. Pretty soon, this stupid, little, annoying bug called cancer is going to run away, begging me to stop torturing it.
Joshua 1:9 (MSG)
“Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”
It’s me again! Stephanie is back and ready to update y’all! But before going further, let me first take a minute to applaud my incredible husband for keeping my readers informed through the entire surgery process. Doesn’t he write wonderfully? I’m pretty proud of this man who I get to call my husband. He’s a total stud. He continues to be by my side through the highs and extreme lows of this adventure…and all the while, keeping you in the loop! I’ll save all the details about him for another blog post, but for now, let me get you up to date.
My stay in the hospital was exhausting. Physically. Emotionally. Spiritually. It’s been about eight days since I was discharged, and I just now feel like I’m settling into the groove. I was discharged the day after Matt last posted. Like he mentioned, my medical team discovered an alarmingly low heart rate and irregular heart beat, and wanted to dig deeper. Easy enough for them…they didn’t have to undergo those insane tests. Once we changed floors and got comfortable in our new room, I was immediately hooked up to a heart rate monitor. This allowed the nurses to watch exactly what my heart was doing at all times. In addition, the following day, an Echocardiogram was ordered. This test is a Sonogram for the heart and monitors the natural rhythm to determine if my organ is functioning properly. Once that was complete, I was transported to the radiology department to receive a PET Rubidium scan and another CT scan. Long story short, I hope I never have to receive another Rubidium scan. Ever heard of a stress test? That’s exactly what it is. Except, nowadays, instead of having a patient who recently had surgery walk on a treadmill, we are placed in a PET scan bed and injected with a special medicine that acts as stress. Oh. My. Stressed is an understatement. I’m always timid to put exact details of scans, tests, and procedures on here for everyone to see, because my intentions are not to scare you. My intentions are truly just to inform. If you get scared, I’m sorry.
To be honest, once this “stress medicine” was injected, I rapidly felt my heart rate skyrocket. I tried not to panic. I took deep breaths and prayed the entire time. For about five to seven minutes, I experienced what I think most heart attack patients may experience. My chest hurt. I felt as though my heart would beat out of my eyeballs and right into my lap. I was sweating. And all I could do was pray that it would be over soon. I’m not a drama queen folks, but I can admit, I did pray… “Lord, please don’t let me die.” Yes, it was that bad. I had tears streaming from my eyes when I was placed back in the wheelchair to be taken to my room again. Once the doors opened and my husband laid eyes on his obviously distraught wife, I could see the anger begin to overflow. I could imagine exactly what was going through his head, and picture it to be something like this: “What the hell did you do to my wife? Why is she crying? I’m going to make you pay!” Once he understood that I was alright and would give him the details when we arrived back at our room, he calmed down. While he has a tendency of being over protective, I am so grateful that I have a husband who cares so deeply about my welfare.
All that to say, my test results came back fine. They did notice the irregular beat and low rate at which my heart was functioning, but it wasn’t alarming. They ordered these tests to rule out blood clots, and that’s exactly what they did. I was free of any clots, and frankly, free of all tears as well. Because I was unable to ingest any solid food or liquids the day of my tests, I was starving when I got back to my room. It was already around four o’clock, and I had nothing in my system since the previous night. All I wanted was some french toast, fresh fruit, and a big piece of cake. And, because of my sweet nurse, I got exactly that! She quickly dialed the cafeteria, and might as well had said, “You better get that food here in two minutes, or else!” Again, I am very grateful for the strong team God continues to place in this game. To add, all of my nurses during my four-day stay were amazing. God placed each and every one of them on my path, and they were each perfect for the job. I really like to form relationships with my caretakers in the hospital, and did just that. I’ve left wondering how they are doing, and look forward to possibly seeing them again someday…Under different circumstances, of course!
Currently, I am still very sore, bruised, and swollen from surgery. I have a total muffin top beginning at my scar line. My belly just hangs there, and it’s extremely unappealing. Good thing my husband loves me regardless! I am finally able to move around without excruciating pain, and am starting to function a little more typically. Matt no longer has to physically help me in and out of bed, and that is a huge victory! I visited my General Oncologist today and after checking out my scar, he was shocked at how quickly I’m healing. I’m young, fit, and strong…what can I say? I also have an army praying for a fast recovery. God’s got me on lock-down. At my appointment today, we discussed the next phase of treatment. Chemotherapy. We talked about which specific chemo drug all my doctors agree on administering, and the schedule at which I will receive it. Before posting concrete plans, I need to confirm with my Gynecologic Oncologist that this is what she would like to do. Most likely she is on the same page, and in which case, I will begin chemo next week. Again, until everything is solidified I can’t be specific as far as how often I will receive doses or how long this next phase will last. However, I am so ready to get this train rollin’! Chemo cocktails never sounded so good until right about now. The waiting and in-between is really the hardest part.
For those who have followed my story, you know that God is the One for big blessings. He hasn’t ceased dropping down those gifts from above. Some, Matt has included in his previous post, and I’d like to reiterate that God is good. Here is why:
- When my Gyn Oncologist/surgeon opened me up in surgery, the tumor popped right up. It was completely encased in a mucus lining, therefore it was all intact. This is not the case for some cancers. Some tumors are not circular and are rather jagged, which makes it nearly impossible to remove the entire mass.
- Because of its mucus lining, my surgeon was able to remove the entirety of the mass.
- The tumor was not connected to my colon, and therefore I did not need any form of a colostomy.
- The PET scan immediately following surgery showed no signs of carcinoma anywhere else in my body.
- My surgeon was able to create an incision at my original hysterectomy scar line. In fact, she removed my previous scar, so now I only have one scar right above my pubic area.
- I am still alive and breathing. God continues to bless me with more days to glorify Him. Hallelujah!
This past week I have been recovering and taking it easy. My body is beginning to function normally again, which I am grateful. We continue to have wonderful support from friends and family, and at a time like this, it’s been extremely helpful. Like I mentioned, I’m finally able to be a little more up and active, and I even felt well enough to make it to church yesterday. I’ve learned that through the storm, instead of hiding out and suffering alone, it is better to surround yourself with joyful people. The most joyous place we enjoy is our church, in the presence of God and surrounded by friends. Needless to say, my spirits were lifted greatly by being in that environment yesterday. In addition, I’ve picked out a new wig! And let me tell you, she is gorgeous! Most know that when I first began this journey, before I lost my hair, I was blonde. Not naturally, but shhh. This time, I decided to go back blonde, and I have been gifted a stunning wig of human hair. Although I’ve been loving my short curly and wavy hair that has grown, I won’t miss it so much now that I have some blonde to rock!
Back to Blonde! Stephanie wearing her new wig. (December 2012)
At the bottom of this entry, I am including a link. A link in order for you to make a choice. As you know, I don’t like to sugarcoat anything, and have always remained open and honest. However, I do understand that some of my readers have sensitive stomachs, and for that I have chosen to create a clickable link so you are able to make the choice to view this image or not. This link is graphic. This link will show you exactly what is trying to take my life. This link might frighten you. Please don’t let it. This link is to a medical picture of the cancerous tumor my surgeon removed last week. You may wonder why I have a photograph of it. I want to see what is trying to ruin me. I want to see exactly what I am fighting so hard to defeat. I need to have a visual of the enemy; The enemy that is getting kicked around, poisoned, stomped on… and ultimately defeated. I feel the need to share this with you, so that you are able to see what you are praying against. I understand if you have a sensitive stomach and can not handle a medical picture of this nature. Whether you choose to view my tumor or not, I thank you for allowing me to be transparent and share the entirety of my journey through cancer with you.
Click HERE to see a picture of the cancerous tumor. (Graphic medical image)
John 10:6-10 (MSG Version)
“Jesus told this simple story, but they had no idea what he was talking about. So he tried again. ‘I’ll be explicit, then. I am the Gate for the sheep. All those others are up to no good—sheep stealers, every one of them. But the sheep didn’t listen to them. I am the Gate. Anyone who goes through me will be cared for—will freely go in and out, and find pasture. A thief is only there to steal and kill and destroy. I came so they can have real and eternal life, more and better life than they ever dreamed of.’”
Does the word “beautiful” define you?
Let’s talk about beauty. The hard fact is, as a woman diagnosed, it’s not uncommon to feel a sense of loss when it comes to our looks. I mean come on, when your hair starts falling out, your body is either increasing or decreasing in size, your face is expressing the enormity of stress by the monstrosity of wrinkles, and your doctor is painting on more and more scars, it’s natural to not feel attractive anymore. Not only have I struggled with not feeling beautiful through this diagnosis, but also not feeling comfortable in my own skin.
Currently, this is one of the largest topics in the world. Society is driven by physical appearance and beauty. It’s sweeping the covers of every magazine. Fashion, makeup, hair, and the perfect weight is probably on the top of every woman’s priority list. No? …Maybe it’s just me. From birth, we are trained to allow society to define our personal beauty. Our “look” must fit into the world’s ideals. Sure, some people don’t abide by the “rules”, but we all care what everyone else thinks of us.
As a woman who has valiantly fought (and beat) cancer, and has undergone a slew of cancer treatments, I can boldly say that society’s definition of what is beautiful sucks. Where are the women who are proud of who they are and what they look like, regardless of what the world tells them? Where do bald women fit in? Why must our bodies resemble that of a prepubescent twelve year old girl? With as much cancer prevalent in our world, why aren’t there more examples of what true beauty is? Why do we, as women diagnosed, feel like we must cover up our truth? Now, don’t get me wrong. Yes, I wore a wig for a lot of my baldalicious battle. Yes, I am currently working out like a crazy person trying to drop these last twenty pounds. Yes, I wore false lashes when my own grew thin. But, I am continually learning that the world should not be the one to define me.
A few months ago, while waiting for treatment one day and rockin’ my bald dome, a woman approached me and asked if I would like to speak to someone about wigs. She continued by asking if I would also like some hats to cover my head. Although I know she was well-intentioned, I couldn’t help but feel unattractive. Thoughts emerged: Why must I cover this up? Why should I hide the fact that I am fighting for my life? Why does hair matter? Am I not beautiful? Oh, and by the way lady, I already own a wig and several hats. I just chose to be me today. Is that a problem?
Along with beauty comes self-worth. If we can downgrade the world’s voice and upgrade God’s voice, our views would drastically transform. If we can see ourselves through His eyes and not theirs, our truth can be revealed. I am learning that I should embrace my differences with pride. Sure, I have a short G.I. Jane hairstyle going on right now and it brings a lot of attention, but instead of allowing those disproving eyes to seep into my spirit, I counteract them with a smile and remind myself that I am beautiful regardless of what anyone else thinks. Just because it’s uncommon to see women without (or with much less) hair doesn’t mean it’s unattractive. Can we, as women currently baldalicious or rockin’ the buzz cut, set a new standard for the definition of beautiful? In fact, as women with or without a diagnosis, can we help other females find their value within?
We are our worst critics. True. We nitpick every fault we have and oftentimes shine light on those flaws. But we’ve got to stop seeing what we see, and instead, see what God sees. When it comes down to it, we will never be good enough for ourselves. But we are good enough for him…more than enough. God sees us without flaws; After all, He was the one to create us. We are a custom design that should be esteemed, not shamed. Hair or no hair, size fourteen or size two, blue or brown eyes, black or white skin, tall or short, it doesn’t matter. Let me repeat, it does not matter. Do we have a kind heart and gentle spirit? Do we shine light or exude darkness? Are we encouraging to one another? Are we forgiving? Do we choose to find our worth in the world or in Him? Now that’s what really matters.
So I ask again, are you beautiful?
1 Peter 3:3-4 (NIV)
“Your beauty should not come from outward adornment, such as elaborate hairstyles and the wearing of gold jewelry or fine clothes. Rather, it should be that of your inner self, the unfading beauty of a gentle and quiet spirit, which is of great worth in God’s sight.”
Things are changing. And surprisingly enough, I’m okay with it.
Those who know me can testify that I am an organizer. Not only did I have to search for years to find the perfect planner, but now that I have, I write absolutely everything in it. Everything. Seriously. Since I’ve started my weight loss regimen, I even include what I eat every single day. I plan weeks and sometimes even months in advance. I take my planner seriously. I carry it with me everywhere. I jot down thoughts, brainstorms, grocery lists, workouts, and of course, the vast list of tasks I need to complete. I have several friends who are free birds, who go with the flow and don’t need to write anything on their calendars. That’s simply not me. I’m afraid that if I tried that, I would most likely forget to do anything. In other words, I’m a planaholic.
I’ve learned quite a lot this past year. One of the more obvious being, planning and cancer don’t always mix. I laugh looking through the months that I was going through treatment, because the only things I ever wrote were “surgery,” “radiation,” “chemotherapy,” “blood draw,” and “doctor’s appointment.” Grocery lists, workouts, weekly meal plans, and errands no longer mattered. Fact is, my only plan was to fight and beat cancer. In fact, in the “to-do” section of each month I wrote, “fight cancer.” In the “goals” section I wrote, “cancer-free.” I laugh because I like to organize every step of my life. Prior to my diagnosis, my husband and I had the following few years set in stone. Well, at least in our minds. We had plans to move, have children, and buy a home. Exactly eight months ago everything changed.
God’s plans don’t always align with ours. While at first I was shocked that our designs for the future might come crashing down, I now understand that God has bigger and better plans for us. Our dreams remain, but the timing is no longer ours. We will definitely move. We will definitely have children. And we will definitely buy a home. I believe that God still has those in mind for us, however they just won’t happen when or how we originally thought they would. Although it’s taken me a while to come to grips with that, I am extremely thankful that we are walking the path that is paved by Him and not by us. His plan is perfect. Ours is not. And being flexible allows you to genuinely live a life for Him.
Besides the obvious changes, other facts are changing as well. I’m no longer bald… anywhere. I am currently sporting a very short buzz-cut. My hair is coming in splotchy and irregular, but it’s there nonetheless. Once my camera can capture my G.I. Jane style, I’ll post pictures. As for now, you’ll just have to imagine it. Unfortunately, the hair on my head isn’t the only thing coming back. I forgot how much I had to shave my legs. I also forgot how annoying it would be to leave the house forgetting to shave my underarms. My showers are significantly longer nowadays. Whereas before I could get away with five minutes, it’s now doubled, if not tripled. I definitely got used to the jump-in-and-out method.
I’m also going back to work. Due to the rigid schedule of treatment, and my lack of health and energy, I haven’t been able to work. However, now that I have received my first clean bill of health and have regained a lot of my strength, I have chosen to start my job again. To say I am excited is an understatement. Once we get back from our cancer-free celebration in California, I will return to the family I was nannying prior to diagnosis.
My body changed drastically over the course of treatment. Like I’ve mentioned in previous posts, I gained about twenty-five to thirty pounds. Thankfully, that is changing as well. In fact, since I began working out five days a week and eating super clean, I have lost a total of fifteen pounds. Fifteen in thirty-five days. I’m pretty proud of myself. To say it’s easy would be laughable. I’ve been kicking my own ass for some time now, and it doesn’t get easier. What keeps me going is seeing my body change and the numbers on the scale continue to drop. My face is starting to look like my own again, and not that of a blown up character in the Macy’s Day Parade.
I always used to think that I embraced change. After all, I did like to rearrange the furniture in our house every now and then. I used to think that I was flexible; I wouldn’t mind if plans with friends got rescheduled. But change and flexibility have taken on new meanings for me. While I was flexible with details changing in the past, I never considered the whole picture changing. I’m talking about LIFE changes… Big, scary, unknown, and unplanned modifications. Shifts to the entire picture my husband and I had painted for ourselves. Our life canvas has been completely erased, and now we are looking forward to what God wants to create for us. Our life has been directed down a different road. One that we couldn’t see with a telescope. But, you know what? I’m grateful. Now that I get a glimpse into what His plans are, our previous plans seem so minuscule and boring. We can try our hardest to plan out every area of our lives, but if it’s not what He wants, it simply won’t happen.
I can and will continue to plan my life. I will continue to jot down every last bit of information in my brain, in hopes that I won’t forget it. I’ll continue to make plans with friends. My husband and I will continue to plan our future. But now, we have a much larger perspective on embracing change and being flexible. Just as often as we make plans, God will readjust them.
If God wants to change your plans, will you be flexible?
Proverbs 16:9 (ESV)
“The heart of man plans his way, but the Lord establishes his steps.”