Showing posts with label The big C. Show all posts
Showing posts with label The big C. Show all posts

Monday, December 19, 2016

Feeding with love

Being out of control is not my strong suit, in fact it’s a place of discomfort for me and I don’t like it one bit. As a cancer patient, I find myself there often.

During my pregnancy with Madeline, a kidney issue was detected and I was eventually referred to a nephrologist who followed me through the end of my pregnancy. We discussed many theories around the cause of the kidney issue, including the fact that it was related to pregnancy in a roundabout way. When the issue didn’t resolve post-partum, we started testing, and lots of it. Everything suspected came back negative and eventually a kidney biopsy was needed to understand the root cause. The results of the biopsy revealed an autoimmune disease where antibodies were being created to attack my kidneys. Riddle solved? Not so fast; now she needed to understand what underlying disease was at fault. More testing was scheduled, but in the meantime I needed to start medication to protect my kidneys. Medication that was not compatible with breastfeeding.

I breastfed Anna and Charlotte until they weaned around one year of age. It was something I wanted to do, something I enjoyed, and something I vowed to do with each of my children as long as it was worked for all parties. For almost a year with both of the big girls my life revolved around a feeding schedule, bras that unlatched, clothing that was easily accessible, and a mental note on the number of ounces of milk were in my freezer at any given moment. It was a sacrifice of love, but one I was more than happy to make because it was my choice and what worked for our family.

Weaning Madeline early hit me hard. Because it wasn’t my choice and because I had no control. I didn’t know how to tell her I couldn’t provide food for her. How to tell her she had to take a bottle instead of the comfort she’d known her entire life. I felt like a failure in all sense of Motherhood. 

*Dramatic much, I know … *

I saw my doctor on November 30 and received my prescriptions that same day. I cried when she left the room and made a half-assed attempt to pull it together when her (really bad) MA came back to review the details. My doctor understood I’d need some time to wean the baby, but had also already given me some leeway until she knew exactly which drugs were needed, and was frank that not starting the medication could put me at a higher risk for eventual dialysis. The choice was clear, but emotions made it hazy, as did the tears. I needed to be a good mother to my baby and other girls, and I couldn’t do that if I was sicker than need be.

My goal was one bottle the first day, December 1. And one additional bottle each day after. I’d pump in between for comfort, and used the small frozen milk supply I’d accumulated, slowly mixing formula and increasing the ratio each day. Breastfeeding experts recommend that first bottles be given by someone other than the Mother to ease the confusion, but in this case, I needed to be the one to make this transition. And it was one of the hardest things I’ve ever done. I was heartbroken. Madeline cried for 30 minutes straight before eventually drinking her first bottle. I’ll never forget the confused look in her eyes. I’ll never forget the sound of her cry. We both cried. A lot. I was truly in mourning, and to this day I still feel pangs of sadness and tears well up when I think of that week.

The second day was a tiny bit better, but still grueling. Each day she cried a little less … 25 minutes, 20 minutes, 15 minutes. We found bottles we both liked after some trial and error and I asked around for tips to make the process easier (formula pitchers, bottle warmers … all the gear). I bought into the old wives tales and took Sudafed and stuffed by bra with cabbage leaves to help ease the pain, and pumped only for relief. After about a week, we’d made it through and I’d started my medication; there was no turning back. Formula and bottles were our new normal.

Parenting is full of important decisions, and each one comes with judgment or opinions from someone. The way you feed your baby should work for your entire family and should be your decision. At the end of the day as long as your baby is thriving and happy and healthy and being FED WITH LOVE, you’re doing your job as a Mother. And that’s what I’m doing … feeding with love. And health. And knowing that I’m doing what’s best for everyone. The road travelled doesn’t look the same, but that’s what life’s all about, right? Where there’s love, there’s life; and we sure do have a lot of both in our home.

Post script:
As sad as I was to close my breastfeeding chapter, there are silver linings. Regular bras! No more leaking! DRESSES! Nudging your husband to take on a middle of the night feeding. All that mental free space where frozen milk ounce counts used to be. 

Sunday, July 3, 2016

Making a wish

We met Bryan and Amy Boynton in our childbirth classes at Christ Hospital back in 2011 when Amy and I were both pregnant with our first child. We became friends over the course of the 4-class program and as it turned out, Amy and Bryan were also members of the church in Loveland we had just started attending; it seemed fate had a plan for us meeting!  

Later that year, we both welcomed healthy baby girls into our family and over the next two years continued to keep up with the Boytons through church and church functions. After Charlotte's birth in 2013 and a brief hiatus from Sunday services, I noticed that Ella was listed as a prayer request in the church bulletin. A basic e-mail to Amy to let her know we were praying for Ella was returned with the shocking news that Ella had been diagnosed with Acute Lymphoblastic Leukemia (ALL) just before her second birthday. She was a fighter though, and already on the second phase of her 2+ year treatment regime. I vividly recall the day I heard the news and later reading through Amy's Caring Bridge Journal entries and sobbing. How could this happen to someone so young and innocent? 

ALL is CLL's cousin leukemia, but I knew little about the diagnosis and treatment. After reading a bit and talking to a pediatric oncology friend, I learned that what was once a death sentence 40 years ago now has a 95% cure rate; mostly due to LLS-funded research! 

Ella has been SUCH a trooper and she's amazed us with the strength and bravery she's shown over the last three years! Ella finished 2+ years of chemo, steroids, and hospital stays last August and is considered to be in remission! Because she received the latest treatments available from Cincinnati Children's, I have high hopes that her remission will be considered a cure in a few years.

Ella and her family have taken their lemons and made lemonade and are now a big part of the LLS family. They've raised over $20,000 through participation in the Moms in Training program (Amy's run two 5Ks with a stroller in tow!) and Light the Night walks. Most recently Ella helped motivate the Cincinnati LLS Man and Woman of the Year candidates raise almost $1M as the honored girl of the year and she was the Cincinnati chapter's Light the Night honored hero in 2015. 

The Boyntons have also become active with the Make A Wish foundation and they were finally able to schedule their own trip through the foundation for this summer; all expenses paid and every detail coordinated to Disney World! I can't imagine a more deserving family or little hero! Part of the Make A Wish program includes a send off dinner and we were honored to be invited to Ella's a few weeks ago. A local Maggiano's hosted the entire meal and made it so special for everyone in attendance, even down to the fact that our servers were Cinderella and Snow White! It took our girls a bit to warm up to the special hostesses, but by the end of the evening they'd been on many trips and tours around the restaurant and grounds with them and even cozied up for a picture. We're making a big wish that Ella is cured and never has to worry about cancer again in her lifetime! 


Saturday, November 1, 2014

I ran for life!

I crossed the finish line !!!!

You can read about my reasons for running here and here, but long story short, I ran because my life literally depends on the funds raised for the Leukemia & Lymphoma Society.


Race day was amazing in SO many ways and you couldn't have asked for a better day to run 13.1 miles! Race weekend started on Thursday with our Team in Training "carb-o-load" and send-off dinner, and it was a fun way to spend a little time with the people we've run so many miles with over the past five months. After dinner the Moms on a Mission enjoyed a little (or a lot of ) wine and decorated our race jerseys together. What a great start to the end of an amazing journey!


On Friday I picked-up race packets and perused the goodies and gear at the Expo before heading home to deliver to my neighbors and welcome my good friend and race buddy, Whitney, to Cincinnati. Of course we had to make a Target run for last minute necessities and it brought back memories of fun, random outings in college (and beyond).

The thing with races is that they start EARLY and there's some waiting in your corrals before you actually start working up a sweat. Serious runners have arm warmers for these occasions, but at around $50 a pop, and something you have to keep up with after they're shed, we weren't willing to lay down that kind of dough. Also, regular stores don't carry them and it was 8pm the night before the race. We had a moment of genius and purchased children's fleece-lined leggings and cut to fit our arms. BRILLIANT! We both went with multi-colored metallic hearts and received MANY compliments on them from fellow runners. They worked wonderfully and it was literally no sweat to pull them off and leave them behind at mile six.


If you've never run a competitive race, you MUST put that on your bucket list; even a 5K is an experience! There's just nothing like the excitement in the air, seeing the crowds and hearing them cheer you on, not to mention the sense of accomplishment. Cincinnati is known for it's hills and we were prepared for the course, and the monster hill at mile seven ... which ran by my old house, coincidentally! The last few miles were the hardest, mentally, as they were pretty flat and crowd support was more limited. But, there was something every mile as supported by the race organizers and those cheers and water stops and cheerleaders (that took many different forms) kept us going. I'd kept pace during training with a neighbor and we had a vague goal in mind, but nothing concrete. As we checked our watches each mile, we noticed we were going a bit ahead of our usual pace and were surprised, but kept on truckin' ... we motivated each other, pushed each other and wound up both setting huge personal records when we crossed the finish line!

We felt like a million bucks!

Outside of the physical accomplishment, I raised over $7,000 (thanks to a $500 grant from my employer received in January) and my Moms on a Mission team raised over $12,000! Thank you to everyone that supported me on this crazy journey. Almost everyone has a personal connection to cancer and my connection is obviously the most personal type. It doesn't matter how or where you give or support, something is better than nothing, and we're making a difference in the way we treat cancer and the life of patients today!

"When your legs get tired, run with your heart." 
Thank you, thank you, thank you for giving my heart so much power!

The Team in Training Queen Bee TEAM

The Moms on a Mission FINALLY got a group shot!

Huddling down pre-race

GO TEAM!!

Post race pride! I crossed the finish line!

Monday, September 22, 2014

I run for life (a series)

Twelve miles down, a little over one to go! I ran my what was and what will be my longest training run, 12 miles (and an extra quarter mile thanks to a missing street sign), this past weekend and am now less than three weeks away from the Queen Bee half marathon! And I feel great!

I set out to get back into running last fall and quickly had to sit on the sidelines due to my bum knee. Seven months, a surgery to remove a cyst and the lining of my knee joint, physical therapy, and a lot of patience later, I was back in the game, but didn't feel like I'd found my stride when I ran the Flying Pig 5K (3.1 miles) in early May. Fast forward four months and I'm well on my way to setting a personal record with this race. I've shaved nearly a minute off my per-mile pace, and feel great after most runs. I've always been a morning person, but never thought I'd take it to the heights I have by running at 5am regularly. I cross-train with elliptical workouts and hot yoga and strength train by regularly lifting a preschooler and a toddler.

I finally feel like I've found my stride, and a little bit of "me" again!

This has, by far, been my most successful fundraiser run with Team in Training and I breezed through my first goal of $5,000 in just about 6 weeks and know I'll make it to $6,000 by race day, maybe even more! My team of recruited runners and I have done several fundraisers outside of direct asks and it's been amazing to see the support we've received from our neighbors and community. I know it sounds silly, but I get chills every time I see a fundraising e-mail come through and I truly feel the support as I run. There are SO many times I want to quit during some of my runs ... the time along gives you a lot of time to think and negotiate with yourself and running is VERY mental for me. But knowing I have SO many supporters, well, that keeps me running that extra mile, literally.

There's still plenty of time to donate, just CLICK HERE. If you can't make a monetary donation; I promise that your support and encouragement means just as much!

The Moms on a Mission after a "short" 6-miler in early August

Friday, July 4, 2014

I run for life

Today is truly a celebration of freedom for me. Nine years ago today was the last day I was free from the burden of having cancer. The night of July 4, 2005 I laid in bed listening to the fireworks as I dozed off to sleep wondering what my future might look like after surgery the next day.  I could never have imagined how it would change, both good and bad.  On July 5, 2005 I had a routine exploratory surgery to understand why I was breathing like Darth Vader. I went into the surgery knowing there was a slight, 1%, chance it was cancer, but because I had no other symptoms that was a long shot.

Turns out it was cancer.

I woke up from surgery to the news being relayed to me by my Mom. I was in a daze for the next few days as my Mom made calls, kept me hopped up on pain pills, and made arrangements for the first rounds of oncology appointments. My Dad came down later in the week, hopped me up on fried chicken and pizza, and pain pills, and I remember sitting on my back porch realizing the world would never be the same.

And it hasn't been. But, I've kept my glass filled half full and I made lemonade! I beat cancer a little over eight years ago. I never asked "why me," and I never got mad at God or the Universe. I fought hard and won, the first round, at least. I'm not cured, but I'm healthy for now and doing everything I can to make sure that we see a cure for cancer in my lifetime.

One of the ways I'm making a difference is through my involvement with the Leukemia & Lymphoma Society. An amazing organization that has led to so many advances in not only blood cancer treatments, but treatments for a wide range of other cancers. Since 2005 I've volunteered my time and raised over $22,000 for LLS.  I've been an honored hero for the TNT program, have participated in a full and half marathon through the TNT program, and most recently became involved with the Man & Woman of the Year (MWOY) campaign through committee membership and was the Woman of the Year honored hero for the 2014 campaign. The video below was featured at the grand finale gala held on May 30 and also features Spencer Wade as the Man of the Year honored hero.  As part of the campaign, I'll be featured on a billboard in Cincinnati in a few weeks.  





And, I'm at it again. I'm running a half marathon (13.1 miles!) with the Team in Training (TNT) program while raising money for the LLS, and asking my readers for their support and encouragement. I've recruited three friends to be my running buddies (we're Moms on a Mission!) and we're training for the Queen Bee half marathon in Cincinnati on October 11!

This time around is a little different than the last time I fundraised for TNT in 2009; since then I've been a *little* busy getting married and raising two beautiful daughters while working full time, and still finding time for the fun things in life. This time around is also different because I have a new perspective on why it's important to continue to help raise funds and awareness for cancer research and patient support. I celebrated eight years of remission in May, but I'm not cured and my fight with cancer is never far from my mind; but now that I'm a mother and wife, my concern has shifted from simply "what will my treatments look like when / if my cancer returns and will I be able to beat it again?" to "will I be able to fight this horrible disease again while also caring for my family?"

With "free time" at a premium, you may wonder why I've decided to train for a half marathon. Yes, it will be hard to fit 4-5 weekly runs and cross training sessions into my schedule (that's what 5am and 9pm are for, right? seriously, that's when I'm training). Yes, I'm older, my joints have a stiffness about them, I'm less flexible and more jiggly. And, no, I don't plan to set a personal record or be at the top of my age group when results are tallied. Quite simply, I'm running and fundraising because I CAN. There were SO MANY days when I was waging my war against cancer where I had to say "I can't." Because the drugs made my body weak, because I was too sick, because I needed to rest and recover. But not anymore, now that I CAN, I'm running for life! For my own life, for the lives of all that have lost their battle to cancer, for those that are still waging their war against cancer, and for all of the heroes I've met along the way.

I'm proof positive that research leads to results! You can read about the details of how LLS has made my life possible, literally, and how they funded research to fund the advancement of a drug that can be used if/ when my CLL returns:  CLICK HERE.  I know that times are tight, but you don't have to dig deep to make a difference; $5, $10, $20 will help! And if you can't donate, I'll gladly take words of encouragement as I train for the half marathon.

I don't outwardly celebrate my diagnosis date, there's no reason to, but I do remember the feelings I had on July 4, 2005, and the day after when I heard the news, and the day my oncologist pronounced (during a routine appointment) that I needed to start chemo right away, and the days I was dead tired from chemo, and the days I wanted nothing more than to be healthy again ... and I remember the day I heard that the chemo had worked; and now I'm living the life of someone that's waiting for the cancer to return. I remember how I felt on all of those days. And if I can keep someone from having to feel the pangs of "what if" after hearing the words "you have cancer"; well, then running 13.1 miles and asking shamelessly for donations will all be worth it. 

Someday is closer than you think.



Thursday, January 23, 2014

The calm

There's a certain calm in an oncology office.  No one is upset or angry because they've had to wait, they aren't grumbling because it's too hot or too cold or because their needle stick hurt more than normal or because their labs are taking longer to run or because their favorite chair was taken.

If you're a patient in that office, you're just happy to be alive.

I still see my oncologist every 3-4 months for routine bloodwork and a physical examination.  And, almost like clockwork, I start to question my health before these appointments.  A bruise that I've seen lingering a little too long or an enlarged lymph node or just being overly tired.  Self-research is dangerous and I've learned that Dr. Google is the worst form.  There's very little that's been published on CLL in patients of my age, and even less on what happens when (not if) there's a relapse.  I'm not cured, they don't know what caused my disease, and they don't know when it will return nor in what form.

Because my doctor is great at what she does, she's very busy and usually running behind, meaning that I spend quite a bit of time waiting in a quiet room on the days of my appointment.  After the pleasantries are exchanged with the receptionists (they always remember me by name) and the medical assistants, I usually have some time to myself to reflect.  I reflect on what I was doing this time eight years ago ... I'd just met Mike, was going through chemo and thinking about the future.  I reflect on what a blessing the last eight years have been ... engaged, married, two beautiful daughters, a roof over our head and financially stable.  Then my mind wanders into dark places ... when will the cancer return?  How would it look if I was going through chemo?  Who would help with the girls?  What would I miss?  Would they be able to get me to a state of remission again?  Would I be alive at the end of the fight?  The what-ifs usually start to overwhelm me just as my doctor makes her way to my room and then the calm sets in again.  She reviews my labs, performs the physical exam and we talk about any of the random symptoms or concerns that I've noted since my last visit.  We always end up talking about our children and catching up on random happenings in our lives like old friends.

Unless you've been there, I don't think you can understand exactly what it's like to have this constant fear in the back of your mind.  And that's OK.  Everyone has their own battles.  I don't know what it's like to live with depression, or be be an armed forces veteran, or to live with a chronic condition that affects your everyday life, or to want children with a passion only to have reproductive problems; my specialty is an incurable cancer.  What's important is that we all band together for each other in this crazy world ... a kind thought, an encouraging word, a prayer, a hug, showing empathy, or offering support.  Everyone has a struggle and it's easy to judge, but it's a lot easier to support.

I pass the treatment room on my way out of the office and generally linger there for half a second before moving on.  Everyone is hooked up to an IV, some don't have their hair, most look tired and some look weak; but they all have hope in their eyes and a smile on their face.  I wish society were more like the patients at the oncologist's office: happy to be alive, hopeful, patient, and understanding ... and I feel lucky that I'm surrounded by people that share these same beliefs and lift me up on a daily basis.

My next appointment happens to fall on my EIGHT year remission birthday ... I think I'll celebrate by taking cupcakes to the treatment room and spreading a little cheer.  And maybe, even if just for a minute, someone else's "what ifs" will disappear.

Wednesday, May 15, 2013

The best itch to have

Today I celebrate seven years in remission from Chronic Lymphocytic Leukemia (CLL), and this is one seven year itch that’s more than welcome in my world!! (You can read more about "my story" here) There’s no cure for CLL, so although today is a reminder to celebrate, it’s also a reminder to keep fighting. This reminder also comes every 3-months when I see my oncologist for a check-up, and the many times I've wondered if a bruise, bump, or any “off” feeling means I’m gearing up for another fight with this horrible disease. I've been lucky, unlike so many others, and I hope I've used my story to help and/or inspire some folks along the way. THANK YOU to my wonderful support network of friends and family who've been there for everything, listened when I needed an ear, provided a shoulder to cry on, and most importantly, have helped me to celebrate all the good there is in life!

Cancer doesn't discriminate against gender, age, race, or social status. If you’re able to do so, please consider making donations to the Leukemia and Lymphoma Society a regular event in your charitable giving; research funded by this organization is why I was treated with the latest and greatest in chemo “cocktails” and why I’m in remission today. Please also consider adding your name to the Bone Marrow Registry through Be the Match, a swab of your cheek is all it takes to be added to the list of potential lifesavers.


Nurse Liz and Doctor Komrojki, my faithful friends for 6 months of chemo and many check-ups before and after my treatments, aka my lifesavers!

Thursday, November 1, 2012

Thankful Thursday: Life is good

I'm copying this series title from a friend and thought it was approprate that this is my first post for the month of November, the month of giving thanks. I was asked a few weeks ago if I'd provide a couple of paragraphs on "what I've been up to over the past couple of years" by the director of our local Team in Training (TNT) program. For those that don't know, I'm a leukemia survivor and work as a volunteer and am a "honored hero" for our local Leukemia and Lymphoma Society (LLS). Mike and I have run two races through the TNT program and those prompted us to run another half marathon together and I went on to run two more half marathons with friends.

As I sat down to write my update, I became nostalgic. For something SO bad and horrible to happen to a person (cancer), SO MUCH GOOD has come out of it. I met the love of my life and best friend because I moved back to Cincinnati to be closer to home during treatments. I've been somewhat miraculously able to give birth to one healthy baby and have another one on the way even after a body-draining chemotherapy regime. I found my way to running, something I would NEVER have predicted I do, be decent at, or enjoy. My life isn't just good, it's great. I'm especially thankful on this Thursday!

(In case you're interested, here's my "updated bio"and you can read more about my "story" by clicking here)

I began my journey with LLS and TNT in 2006, shortly after I was deemed to be in remission from Chronic Lymphocytic Leukemia (CLL). I began as a general volunteer, but was quickly recruited to become part of the Honored Hero program that serves TNT. Working with TNT and the "hero" program was a natural fit for me, I had always said that if my story was able to help others, then my journey was 100% worthwhile. After hearing many past participants speak at the same meetings where I shared my story, I was encouraged to sign up for my first full-marathon, the Flying Pig 2008. I had never been a runner before in my life, but knew with the proper training and dedication, I would cross the finish line. I persuaded my then-boyfriend, Mike, to sign up with me. Mike and I both met friends we still keep in contact with today during that training season, and I received the shock and joy of my life when he proposed in February 2008. We crossed the finish line in May and our journey with TNT has continued to this day. We completed the Flying Pig half marathon in May 2009, a mere three weeks before we became husband and wife on May 23, 2009. Since then, together we completed the Chicago Rock n Roll half marathon in August 2009 and I completed the Disney Princess half marathon in March 2010 and the Nashville Women's half marathon in September 2010.

You'll notice my race-running stopped about two years ago, and for a really good reason. When I ran the Nashville half, I had discovered I was pregnant with our first daughter earlier that week. With clearance from my OB I completed the half and continued to run sparingly throughout my pregnancy. On May 14, 2011 (one day before my 5-year remission "birthday") we welcomed the joy of our lives, Anna Elizabeth, to the world. I can't tell you what a blessing Anna has been to our lives! We've had so much fun with her that we decided to saddle-up again and I'm due with our second child (another girl!!) in March 2013. We feel blessed beyond belief! Having a family is a dream come true, literally, for me. Before starting my 6 rounds of chemotherapy treatments in October 2005, my oncologist referred me to a reproductive specialist. Because I was such a young CLL patient, there wasn't much, if any, research on the effects of my treatment regime on reproductive organs and my doctor pronounced my abilities to have children as fairly grim. That said, to have one healthy baby and another one the way is nothing short of amazing. The fact that I'm in remission 6+ years later is a true testament to the fact that research leads to results! My "chemo cocktail" had been published in a medical journal just months before my treatment began. I will forever be grateful to the LLS for their tireless dedication to the cause and I can't wait to lace up my running shoes again for TNT!

Thursday, August 11, 2011

Hope

There's only so much HGTV and Food Network that I can take during Anna's feedings and I've actually enjoyed the chance to watch the national evenings news during my maternity leave.  What an extra-special treat to catch this story on last night's broadcast of the NBC Nightly News!  For those new readers, this is HUGE for all cancer patients, but especially me as I'm in remission with CLL, a currently incurable form of cancer.  I'm in a holding pattern / waiting game until the cancer returns and this could mean a CURE when that time comes.  I've watched this clip no fewer than five times and can't tell you what pure and utter HOPE it gives me! 

Although I'm in remission, "the big C" (as I like to call it) is always in the back of my mind and is brought to the forefront during my quarterly oncologist visits.  Especially now, with Anna, I am more fearful than ever about a relapse and being able to be a Mom as well as fight off this nasty disease again.  As strong a front as I usually put up in this regard, part of me feels as though I was lucky enough to win the battle once, what if I don't have the fight again or if the stars don't all align? News like this give me intangible hope!

This is exactly why I do what I do with the Leukemia and Lymphoma society and why I choose to donate to cancer research via the LLS and ACS ... research leads to breakthroughs like this and those lead to cures! 

Sunday, May 15, 2011

Carefee to chemo to cankles in five years

In the summer of 2005 I was diagnosed with Chronic Lymphocytic Leukemia (CLL), a cancer most commonly found in men over the age of 55. I was the youngest patient diagnosed at the time and the first patient diagnosed through a lymph node behind my nose. I was living in Charlotte, NC at the time, actively searching for a condo to purchase and planning to settle down there for the next several years.

Well, cancer changes things.

Shortly after diagnosis, I was fortunate enough to be offered a transfer by the firm back to Cincinnati. This wasn't something I had asked for and at the time of diagnosis there was no defined plan as to when I would start treatment, but the transfer was a blessing in disguise. It was a way to get me closer to home without me saying that cancer had won by controlling any part of my life. I moved back in September and by that time had undergone a bone marrow biopsy … that's where they drill into your hip bone to take a sample of your marrow … this particular procedure was done without any numbing agents other than a lidocane applied to my skin … it hurt like HELL. Anywho, the biopsy had revealed my form of CLL was very aggressive and upon meeting my new oncologist at the University of Cincinnati we determined I would start treatments in October.

I remember that day. The day we decided to start chemo. It was a Monday and I thought it would be a routine appointment. Rather he proposed I come back the next day to start the toxin flush of my body. I bartered and we agreed that I'd start in a week, allowing me time to wrap things up at work and arrange for a support system from Lexington. After we'd agreed on a timeframe I needed to give blood so that they could test and match to my brother, for purposes of a potential bone marrow transplant down the road. On the walk from the office to the lab I broke down in hysterical tears. It had finally hit me. I had cancer. I would undergo chemotherapy. I was 26 years old.

The following Monday I underwent my first round of chemo. My regime consisted of a "cocktail" of three drugs, Fludarabine, Cyclophosphamide and Rituximab, FCR it was called. In addition to the actual drugs, there were a myriad of pre-treatment drugs I took each day and a specific cycle and dosage of each that was followed to the T. The second day of treatment I underwent a minor surgery to have a "port" installed in my chest, allowing easier administration of the drugs and keeping me IV-free. The surgery was routine, but anaesthetic from the surgery made me queasy and I threw up in the OR as they were discharging me. No rest for the weary, though, I was wheeled up to the 4th floor, same as any other chemo day and underwent treatments. That day was a blur for the most part, but I remember continuing to throw up, I remember the other patients feeling sorry for me, I remember nurses taking care of me and I remember my Mom being there.

The next six months were much of the same. One week of intense treatment, three weeks of recovery. Through it all my friends and family were steadfast rocks for me. I received calls, letters, care packages and so much more. My mom was there for every treatment cycle and in between. She kept my house running, ensured I was nourished (even when NOTHING sounded good to eat), she made my bed daily, she provided a shoulder to cry on, she asked all the right questions of the doctors and the nurses. She was my rock.

I wrapped up treatments in March, just in time for St Patrick's Day, one of my all-time favorite holidays. I went in for another bone marrow biopsy in late April, this time with proper pain medication, and learned at a follow-up appointment on May 15, 2006 that there was no trace of cancer in the sample they analyzed. That meant I was in remission. I remember being in shock. I didn't really know how to react and I didn't for a while. I remember going home, seeing my Mom off to Lexington and letting it sink in before calling any other family or friends.

You see, there's no cure for CLL. In fact, they don't even have good studies on how it's treated if a patient sees it return … most patients are too old at that point to make another round of chemo worthwhile or beneficial and as such they truly die from CLL. Even though I was in remission, it wasn't if, but when the cancer would return. Don't get me wrong, I was thrilled and obviously celebrate this day, but it wasn't the feeling I expected. The first year in remission was the hardest. I was scared every day that I'd feel an enlarged lymph node. I was scared that the cancer would be back and I wasn't sure if I'd have the fight in me again. And, I felt embarrassed for not celebrating my victory as much on the inside as I did on the outside. I have since learned this is normal and through the Leukemia and Lymphoma Society (LLS) have met other young cancer survivors that have truly blessed my life and shared similar feelings and stories.

That said, there's great news that has come out of all of this … and this is why I TRULY believe that everything in life happens for a reason. I met Mike when I moved back to Cincinnati. Most guys would shy away from dating a girl four cycles into a chemo regime, but he didn't. He stood by me and has been there each follow-up visit, x-ray scan and even the every-so-often moments when I think about the cancer returning. Five years later we're married, homeowners in the 'burbs and expecting our first child (hence the cankles). Pretty freaking amazing if you ask me. My brother was deemed a "match" and should my cancer return and a bone marrow biopsy be the best deemed option, that's a huge advantage. And, I became involved with a wonderful organization, LLS. Through them I've been able to give back by sharing my story and through walks and marathons have raised over $20,000 to support their cause.

So, today I celebrate five years in remission. It's not a cure, but it's a pretty freaking HUGE milestone. I still see my oncologist every three months, still have yearly scans and still check myself for enlarge nodes regularly. But I also have a renewed sense that life is good and God is great.

And, if cancer comes back, I CAN and WILL kick its butt again.

**  The fine print ... I wrote this several days before posting and have since welcomed our beautiful baby girl, Anna Elizabeth, to the world.  She arrived just a few hours ahead of this milestone and has brought a new perspective to everything, making me cherish life even that much more.  It was amazing to hear the reaction from the hospital staff as I was giving my health history before and after delivery ... what a true gift life is! **

Sunday, February 27, 2011

A little poke here, a little prod there ...

I saw my oncologist this past week and had a great visit (sentimental and sappy post to come).  I ran into one of the oncology nurses that administered my chemo over 5 years ago and it was great to catch up.  He was thrilled to see I'm expecting and the entire office staff was doting over the baby bump.  I see my oncologist every four months and it's crazy to think that I'll be a Mother at my next visit!  Of course the entire staff insisted I bring Baby Kelly with me, if possible. 

My appointments these days are pretty routine.  Weight, blood pressure, temperature, bloodwork.  How are you feeling?  Any noticeable lymph node enlargement?  Night sweats?  Any other symptoms or issues?  Then we move onto the physical exam.  Because it's my lymph nodes that are affected by the cancer cells, they check my neck, underarms, abdomen and spleen.  Since I'm so special and such a fun, easy-going patient, my doctor always has a medical student or resident with him (read:  really it's the cancer that is special in the case of my diagnosis, but I prefer to think it's because I'm so awesome). 

This time was no different in that a third year medical student was with him.  Having several close friends that are doctors I never mind having a student examine me at these routine appointments.  We went through the usual round of questions, this time also discussing how I met my doctor's wife at a Junior League meeting, and then started the exam.  My doctor listened to my heart and lungs and then palpated my neck and underarms.  Then he looked at the med student and said "OK, why don't you check her abdomen and spleen for swellling."  I seriously almost peed my pant when he said that.  I mean, how, with this belly do you poke and prod anything except the belly? 


The med student was very professional and gently prodded around my "bump" and reported that she felt nothing out of the ordinary ... other than the the small melon that I'm growing ...