Hodgkin’s Lymphoma: Melody’s Story

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Melody and I went to the same high school but graduated a few years apart. We actually didn’t really meet until she happened to be roommates with my sister-in-law, Casey, while they were in college. Don’t you love situations that remind you how small our world is? 🙂 I got to know Melody even better as we were both bridesmaids in Casey’s wedding this past Spring. Since then she has been dealing with so much more than someone her age should have to face. When I heard she had cancer it didn’t seem possible. How does that happen to someone so young??? She’s one tough girl though and has an amazing story to share! I asked her to share her story with all of you to help promote a very worthy cause, The Leukemia and Lymphoma
Society Light the Night Walk, which you will be hearing more about from her now!



When Emily asked if I would like to share my story on her
blog, I had no hesitation that I would love to do it. However, figuring out
where to begin is not as easy as I thought… so I will just start from the
beginning of what has been a roller coaster last 4 months.


In December of 2011, I came down with a nasty
cold that could have possibly been bronchitis. As someone who rarely gets sick,
I put off going to the doctor in hopes that I would just get over it and save
having to take off work for a doctor to tell me there wasn’t anything they
could do about it. This may sound silly, but this is one of my biggest fears…
knowing something is wrong and a doctor not being able to tell you what it is,
or telling you that everything is fine. This has certainly happened to me in
the past, and contributes to me not liking going to the doctor when I can’t
physically point out what is wrong. So, when I got sick in December, I never
went to the doctor, and what I thought would be a short cold, turned into a
month and a half long battle that I just couldn’t seem to shake. Eventually I
got over it, but shortly after, I noticed a small lump form on my left side,
under my skin where my neck meets my collarbone. It was so small that you would
only know it was there by touch, except that it was also tender. After
consulting a couple of friends, I was told that it could be inflamed lymph nodes,
which are important for flushing out infection from the body. I took this as a
good explanation, and once again, figured I would wait it out instead of going
to the doctor.


Over the next several weeks, the lump got a little bigger, and eventually I
noticed another one pop up next to it… and then another one on the right side
of my neck. I now had three lumps, all growing in size, yet I hadn’t been sick
in tw
o months. The lumps got so large that my collarbone lost its definition,
and it became uncomfortable to sleep in my normal positions as the range of
motion in my arms was affected. When this happened, I knew it was time to
consult a doctor.

As a probation officer, I am required to get an annual
physical for my insurance. When I went for my routine check-up in March of this
year, I planned on mentioning these odd lumps to my general practitioner. After
examining me, my doctor drew some blood for tests, and also prescribed me some
antibiotics to see if that would help. After a week or so, I had a follow-up
visit. The blood tests all came back normal, but the antibiotics had not caused
any change. As a second attempt to assess the issue, my GP prescribed an
anti-inflammatory. These helped a great deal… it took away the tenderness,
reduced the size of the lumps, and allowed me to sleep easier. Still, the lumps
did not go away completely. That is when my GP referred me to a general surgeon
for a biopsy.



This picture was taken May 5, 2012, the weekend before my biopsy. It is a
little hard to tell with my hair in the way, but you can see how my collarbone
has completely blended into my skin due to the unnatural enlargement in my neck
area.

I have never had a biopsy before, but was told that the
general surgeon would simply take a tissue sample using a large needle… quick
and fairly easy, except for the fact that I HATE people touching my neck.
Wrong. During my visit with the general surgeon, I was informed doing the
biopsy would entail actual surgery where I would be under complete anesthesia,
on a respirator and all. This was actually good news to me… it meant I would be
asleep and no needles would be coming near my neck. On May 14, 2012, I had my
first surgery, removing one of several lumps in my neck. While I don’t remember
anything but being wheeled into the operating room, the surgeon told my mom
that the piece he removed was the size of his thumb… and that was only one of
them.



Before and after the biopsy.

My surgery was on a Friday, so I got to go home for the
weekend and recover while my mom took care of me. I had already taken leave
from work for 2 weeks, doctor’s orders. I didn’t expect results for a few days,
but the Monday following surgery, got a call from the doctor saying the results
had come in and we could come to the office that day to discuss them. So, my
mom and I drove from Lawrenceville to Austell to finally get an answer to my
mystery illness.



May 13, 2012 – two days after the biopsy and the day before finding out I had
cancer.

Walking into the doctor’s office, I wasn’t really nervous as
maybe I should have been. The surgeon greeted us in the exam room and began to
explain the findings in doctor terms… a lot of mumbo jumbo to me. As my mother
and I listened, I did so intently, trying to decipher what he was explaining,
when the term “Hodgkin’s Lymphoma” exited his mouth. He said it so nonchalantly
and just continued on… but to me, the room went quiet. Honestly, I wasn’t 100%
sure what that meant. I don’t know a lot about cancer, luckily have only had a
couple of family member’s personally affected by cancer, and had never heard
the term “Hodgkin’s Lymphoma”, but I had a gut feeling what it meant. And I
knew there would be one way to tell: look at my mom. I turned my head her
direction, and she was staring at the doctor as he continued to speak and her
eyes were watery. I could tell she was trying to hold the tears back. When the
doctor finished his explanation he left the room, and I know I had a complete
deer-in-the-head lights look on my face. To confirm my gut feeling, I turned to
my mom and said, “So I have cancer?” My mom just nodded and came over to me,
tears finally falling from her eyes. I don’t remember crying; just staring at
the floor with the biggest “never thought it could happen to me” feeling of my
entire life. Needless to say, the ride home was very quiet. Not only was I just
given the most shocking news of my life, but my boyfriend at the time was
coming over for the first time that night to meet the parents. How. Awkward.

I can’t explain how it was adjusting to the news that I had
cancer. Honestly, I didn’t have much time to process it. The next two weeks
were filled with multiple doctor appointments almost every single day, as well
as disclosing the news to various family members and friends. I never cried for
myself, never wallowed in self-pity, but telling my best friends that I had
cancer and hearing them cry over the phone or watching it in person, was one of
the hardest things I have ever had to do. It made me cry, every. Single. Time.
Doing this over the next couple of weeks was emotionally exhausting. I think it
was a good thing that I never had time to stop and think, as I was consumed
with appointments.



On Tuesday, I met with my oncologist, who explained the next steps. I would
undergo chemotherapy and possibly radiation, but first the cancer had to be
staged. There are four stages of Hodgkin’s Lymphoma, but unlike other cancers,
the stage mostly refers to how many places it is in your body, as you have
lymph nodes all over, rather than how ill you are. Stage 1 and 2 referring to
one or two places in your body, both above your diaphragm, stage 3 meaning
above and below your diaphragm, and
stage 4 meaning the cancer has spread to your bone marrow. Each stage is also
broken down into two subcategories, “A” and “B”: “A” means you do not exhibit
any symptoms of having cancer, and “B” means you do. The sooner the cancer was
staged, the sooner I could begin treatment, so, we began testing right then and
there. 


Step one was to test my bone marrow to find out if it was in
stage four or not. This was the worst part out of anything I had been through
up to that point, and possibly of my entire experience. If you have ever
donated bone marrow, you may understand, but I am assuming, like me, most of
you have not. Testing bone marrow consists of the largest needle I have ever
seen being injected into the back of your hip bone, and literally shaving off
and removing a piece of bone. Luckily since it is done on your backside, I
couldn’t see what was going on. As I laid on my side of the exam room table, my
best friend, Stephanie, held my hand, kept eye contact with me, and tried to
comfort me as my mom looked on. Having this done was one of the weirdest
feelings. It wasn’t all about the pain, but the most uncomfortable pressure
that was so unbearable. I am so thankful that Stephanie was there that day, as
she has been at many of my appointments. She is the biggest tangible source of
strength I have in this world, and I couldn’t have bare many of the following
months without her.


After the worst of it was over, the remaining tests occurred
over the next few days: a PET scan to test for stages one, two and three, as
well as a pulmonary test and an EKG of my heart to make sure they were strong
enough to endure chemo. And before I could even get all of this out of the way,
I was back in the hospital for another surgery. That Friday, May 18, 2012, I
had my second surgery. This time to insert a port in order to administer chemo.
These days, many chemo patients have this surgery which allows doctor to draw
blood and administer chemo drugs through a port that is connected to a vein,
rather than having to find a vein for an IV every time. The port was placed
just below my collarbone on my left side, and is connected to a vein in my
neck. When I wear certain shirts, you can see the protrusion the port makes
from underneath my skin, which definitely makes me self-conscious in certain
situations. Stares are never something you completely get used to, but I don’t
blame them. Most people have no idea what it is or what it is for; I wouldn’t
if it hadn’t happened to me.  Luckily, it
is only temporary, and I will have another surgery to have it removed once
treatment is over.



My Port – “Portia”

Over the next week, test results trickled in. My oncologist
finally determined what stage my cancer was in: 2A. This was the best possible
news we could have gotten, since we could already tell before the biopsy that
the cancer was in at least two places, as it had created lumps on both sides of
my neck. Turns out this was the worst of it, but there were some lymph nodes in
my chest that the PET scan showed were also slightly enlarged. However, I
exhibited no symptoms of being sick, and other than the lumps, had felt
perfectly normal and healthy. Based on this diagnosis, my doctor recommended 2
cycles of chemo (8 treatments in all) that I would receive once every two weeks,
followed by a short period of radiation, daily for a week or two. Exactly two
weeks after my first surgery, on May 25, 2012, I had my first session of chemo.


Chemo affects everyone differently. I was given plenty of
reading material from the doctor and family members on what to expect… fatigue,
nausea, mouth sores, changes in skin and nails, constipation, diarrhea, loss of
appetite, sensitivity to the sun… basically anything you could think of and oh
yeah, hair loss. My first session of chemo was the worst one I’ve had. I was
bed-ridden for days. I would be awake for no longer than a couple hours, before
falling back asleep, and I was still on pain meds from my two surgeries. 


The effects wore off and after being cleared by the surgeon,
I returned to my job as a probation officer in Atlanta. I had, however,
voluntarily left my position on a specialized unit and transferred to the unit
at the court house, where work was less demanding and I would have less stress.
This included giving up the promotion I received 7 months prior and taking a
10% pay cut, but I found it to be in the best interest of my health. 


After two weeks, I returned to the oncologist to receive my
second session of treatment. Before every treatment, my nurse draws blood in
order to assess my overall health, especially my blood count. There is a magic
threshold in order for me to receive treatment. Because your blood count is
directly linked to your immune system, my oncologist does not like to treat if
my blood count is below 1.0. The lower your blood count, the lower your
immunity, making you more susceptible to infection. Before my first session of
chemo, my blood count was 7.2, a little high, but healthy. Two weeks after my
first treatment, my blood count was 0.2. Basically, I had no immune system
whatsoever. Because of this, I could not receive treatment. I returned after
another week, and my blood count had bounced back somewhat, to 1.8, enough to
receive treatment.


This has been a constant pattern throughout my entire
treatment. I get one session, come back after two weeks only to find out that I
can’t receive it because my blood count is too low, and come back on week 3.
Due to this, chemo that should have only lasted 16 weeks and been over by the
end of August is still ongoing, and it is now the end of September. During this
time, I also decided to forego receiving any radiation. I honestly just was not
comfortable getting it, as the long term effects can be incredibly damaging.
Unfortunately, treatment for cancer can also cause, you got it, cancer. I
already run the increased risk of developing other forms of cancer due to
receiving chemo, and am not about to subject myself to an even higher risk by
also receiving radiation, when chemo alone can cure my disease. Still, I met
with the radiologist, and to my pleasant surprise, she completely agreed and
was adamant about not treating me. Against the initial plan of my oncologist,
we eventually agreed that I would only receive chemo, although it may extend
the number of cycles I would have to get.


After completing my first cycle of chemo (4 individual
sessions), I went back for another PET scan to monitor my progress. I could
physically see that the chemo had been effective, as the lymph nodes in my neck
had greatly diminished in size. My oncologist had high hopes and believed my
scan would bring positive news. On August 7, 2012, I received the results of my
scan… NO ACTIVITY! AKA… I WAS CANCER FREE. I received the news from the doctor
over the phone while I was at work, and a weight was lifted off my shoulders. I
was all smiles. The first two calls I made were to my mom and Stephanie, who
have been there every step of the way. Best. News. Of. My. Life.


Since then, I have still been receiving chemo. My doctor
recommended that I still receive the second cycle, and possibly even more. As
of today, I still have at least one session left to receive, and if my doctor
sees fit, then another 4 after that. The dilemma lies in that my doctor is
supplementing no radiation with extra chemo, but does not want to over treat
me. Since I am so young (23 when I was diagnosed, now 24), my doctor has rarely
had to deal with this situation. Typically, Hodgkin’s patients are either
younger and seen by pediatric oncologists, or way older where the long term
effects of radiation aren’t really factors in determining treatment. I trust
that my doctor will make a decision based on her expertise and my best
interest, but I pray that after my next treatment I will be done. Luckily, my
side effects have never been as bad as they were the first time, and I feel
like I have maintained a positive attitude. But, if I knew I was only half-way
done with treatment, it would be much harder to endure.



As for my side effects, they have remained pretty consistent. For the
three-four days following treatment, I am tired needing more rest than usual,
nauseas, and have a not so pleasant taste in my mouth. All in all, not bad
compared to most of the population receiving chemo. I have been incredibly
blessed in that I am well enough to maintain my normal routine of working,
working out at the gym and running, and have not lost all my hair. Besides the
close friends and family that I confided in, no one could tell I was receiving
treatment. Don’t get me wrong, my hair has been falling out every single day
since week 3. Luckily, I started out with a LOT of hair. I have always had very
thick hair, enough to where any hair dresser I go to comments on it. Still,
after losing hair every day, I am still in shock at how I still have so much
left. I really can’t answer that question. With the assistance of insurance, I
even purchased a wig early on, figuring I might as well be prepared for when
the time came to shave it all off. And yet, after 5 months, that time hasn’t
come. I have cut my hair shorter and put layers in to help with the thinning,
but I cannot explain why I have not succumb to the all too common side effect
of hair loss. Still, watching my hair fall out in my hands on a daily basis is
one of the hardest things. I admit it is shallow and my hair is not what makes
me a pretty or good person… but until you go through it, you truly cannot
understand what it is like as a female to lose one of the biggest things that
makes you feel like a woman. I have grown accustom to it, but I can’t say that
I will ever be completely comfortable with it. It makes me self-conscious. Not
around my friends, but around people who don’t know me and don’t know why my
hair may appear thinner than what it is supposed to be, especially to those who
see me at work on a daily basis and don’t know my story. I know I shouldn’t
care; hair is hair…it doesn’t make you who you are and it grows back. I
struggle to accept this and embrace the way I look, knowing it could be much
different, but it isn’t easy. What I can promise, is that when the day comes
that my hair is back to its original thickness, I will NEVER complain about it
being too thick again!


Hair cut before and after – 4 weeks after starting treatment. (Thank you to
Katie Vaughan for coming with me, and for my hairstylist, Morgan Christy of Bob
Steele Salon in Kennesaw for always doing such as awesome job!)

Well, that turned into a longer testimonial than I expected,
and that isn’t even everything. But, the main reason I am sharing this story
with you is to also share about a not-for-profit organization that helps cancer
patients and survivors in many ways, including giving grant money to help with
medical expenses. After two surgeries, many, many tests, and 7 chemo
treatments, you can only imagine how the medical bills stack up. I am blessed
to have what I didn’t know until now was great insurance through the State, but
it still left a portion of bills unpaid. I was put in contact with an
organization called the Leukemia and Lymphoma Society, and after a plethora of
paperwork, was finally given some money to assist in the paying of some of my
bills. It didn’t cover everything, not even half, but as an able-bodied, working, middle-class person, to receive any
money at all from a non-profit organization with limited funds was enough for
me. 


Not even a week later after receiving a grant from the
L&LS, my friend (Cass) contacted me to see if I was interested in getting a
team together to participate in a walk to benefit a cancer organization. Turns
out, she picked the exact one that had helped me with my finances! I was
immediately on board, and we began the process of registering a team and
putting the work out for participants and donations. The Leukemia and Lymphoma
Society Light the Night Walk is a fundraiser to support cancer research, supply
informational materials to cancer victims and families, support local programs,
and provide financial assistance. There is so much information on this
organization, and it can all be found at their website: http://www.lightthenight.org/


I never once viewed my diagnosis as a death sentence or
wanted people’s pity. To me, it was just a part of life, treatment was just
something I had to do, and then it would be over. Now that I am cancer-free (I
don’t like the term “remission”…I think it has the connotation that you expect
that you will one day NOT be in remission), I want to give back. I have already
began the volunteer process with the Make A Wish Foundation, where I will get
to help grant wishes for kids with chronic and terminal illnesses. Now, I want
to help raise money and walk in support of an organization that helped me. What
I am asking of you is simple. I would love for you to join the team and walk
with us, however, I know that is not convenient for everyone as this story is
now being shared with people who have never met me and are not local to
Atlanta. In that case, you can show your support without ever leaving the
comfort of your own living room. Cass and I have created a team and you can
donate directly to our team in support. Team Lymphomaniacs (clever, we know)
will be walking on October 13 at Centennial Park in Atlanta. Your donation will
help benefit everything I mentioned above and make the difference in someone’s
life. As cliché as it sounds, no donation is too small. Our goal is that every
person on our team raises $100. As of today, we have three team members
(myself, Cass, and my mother), and have already surpassed that goal, having
raised $400. Now, it is just a race to see how big of a difference we can make
before our deadline!


I appreciate those of you who actually read this entire
story. I know it was long, probably painfully so. But even more, I would
appreciate your donation to this cause. As team captain, I plan on wearing a
shirt that displays every name that donates any denomination of money. How cool
would it be if that shirt were full of names!? 


If you would like to make a donation, it is very simple.
From the Light the Night website, you can search using my name (Melody
Eberhardt) or follow the link: http://pages.lightthenight.org/ga/Atlanta12/Lymphomaniacs

 

The website gives the option of donating to our
entire team or donating to a specific team member. I would appreciate it if
everyone donated to our team rather than just to me. The money all goes to the
same place, the only difference being you donation amount gets split between
team members and your name is displayed on the front page as a contributor,
rather than on a team member’s individual page.

Once again, I thank everyone in advance for reading and
donating. It means more than you know. And I would also like to especially
thank my mom and three best friends, Stephanie, Jenna and Casey, for being the
biggest rocks for me. There are many others worthy of mentioning, but you guys
have been there for me every step of the way. You have been my rocks, and I
could never possibly repay you for the kindness and support you have shown me.
But I am sure going to try J.
And lastly, to Emily, for letting me share my story, my WHOLE story, for the
first time start to finish.


My 3 best friends on celebrating my 24th birthday. This is the same
day I bought the wig (“Mona”). I wore it out this night just for fun!

My loving mom

I am so thankful Melody was willing to open up and share her personal story with all of us. I think it’s so important to empathize with others and have a better understanding of different obstacles people have to overcome. Melody impresses me SO much! I am a person who feels like I HAVE to vent. Like my every emotion needs to be put on the page and displayed for all to see (heck, my FACE gives away my every thought haha). But Melody kept so much of her story private. She is so strong to fight it on her own with her own support system of close friends and family. To keep working like she did. To not complain about the cards life dealt her. To be more concerned with how her cancer affected those she loved than herself. She’s a true inspiration and I wish I was able to attend the walk in October! I hope some of you in the Atlanta area can attend and that those who can’t will donate along with me to the cause! Thank you again Melody for sharing your story!!! And thank you Lord for answering our prayers and allowing Melody to be CANCER FREE 🙂

journeyofphood

Hey Guys, I’m Emily! I’m a stay at home mom and consider parenting to be my passion. Disney is my happy place and I love making memories as a family together. I’m a big believer in transparency and share all of my real-life moments as a mother of four.

My work has been featured on Today Parenting and Chronicles of a Babywise Mom. I’m also honored to be a member of the Babywise Friendly Blog Network.

You can read more about our family on my About Me page. Also be sure to follow along with me on Instagram, Facebook and Pinterest!

Find me on: Web | Twitter | Facebook

8 Comments

  1. Melody Eberhardt
    September 24, 2012 / 12:14 am

    Thank you so so much Emily for allowing me to share through you 🙂 – your words brought tears to my eyes! And thank you for contributing to the Light the Night Walk! I will be sending you some pictures after the event!

  2. Katie Roberts
    September 24, 2012 / 12:22 am

    What a wonderful story and inspiration! I worked as an oncology nurse a couple of years before having kids and rarely got to see the success stories.

  3. Stephanie
    September 24, 2012 / 7:33 pm

    I love the short haircut!!

  4. Jody and Dick Fee
    September 25, 2012 / 6:33 pm

    Good luck, lymphomaniacs. Melody, your story is very inspirational and I greatly admire your positive attitude. We look forward to seeing you the next time we go through Atlanta. Dick and Jody Fee

  5. Nancy Stein
    October 2, 2012 / 12:57 am

    Melody… you are such an inspiration to all those who are fortunate enough to know you. For you to come out to Colorado to celebrate Jenna's wedding with us, while you were going through your treatment is testiment of how very special you are!We are elated to hear the great news that you are cancer free! Stay strong, sweet girl and we'll continue to pray for you!Love, Brian and Nancy

  6. Barbara
    October 9, 2012 / 5:21 am

    What an incredible story! It has taken me 5 minutes to stop the tears from flowing. They are tears of saddness first then tears of joy for God's greatness and answers to prayers. I am so proud of you Melody for keeping your head up and staying so strong. I'm thankful that you have such a wonderful mom(my sister) to be with you through all of this and who helped make you who you are. I am also thankful that you obviously have some truely great great friends. Thank you Emily for writing this and telling Melody's story as I know she wouldn't be able to tell all of her relatives this same story with all of the details you included (there's too many of us LOL). Having this in writing is a precious memory. We love you very much Melody and can't wait to see you sooooon! Barb, Dale, Daniel, and Allie

  7. Sami Khan
    November 8, 2012 / 11:27 pm

    sami khan

  8. KristenPlotner
    June 6, 2014 / 5:42 pm

    Thank you for sharing your story! I recently was diagnosed with Stage 3 Hodgkin's Lymphoma and I start my chemo on Monday. I, too, found out through a biopsy of inflamed lymph nodes in my groin that I had cancer. Can't even describe the feeling. I am hoping to have your strength and courage while I myself go through this process. God Bless You and keep you cancer-free!

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