Hodgkin’s Lymphoma: Melody’s Story

Hodgkin’s Lymphoma: Melody’s Story

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 two 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 members 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 has 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, nauseous, 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 succumbed 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 begun 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 a 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.

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 24^th 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 🙂