Fuck You, Hodgkin's
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I'm Lia. This is my Hodgkin's journey.

All the Important Stuff (#1)

5/22/2019

16 Comments

 
For those of you who don't know or for those of you who do, I was recently diagnosed with Stage 4 nodular sclerosis Hodgkin's lymphoma.

"Is this a joke!?!" 
 "I'm only 20 are you kidding me." 
"There's absolutely no way."

These were some of the many thoughts that were bouncing through my mind when I found out. There is no way to prepare for this. Never in a trillion years did I think that I would be faced with this hurdle at 20.

It all started three months ago when I woke up with debilitating lower back pains. After 2 months of unsuccessful chiropractic treatment, my chiropractor (who turned out to be my savior) urged me to get an MRI. Then the fun began. After the highly abnormal MRI came the bloodwork, the CT scan, the PET scan, the bone marrow biopsy, the EKG, the Lung Function Test, the surgical lymph node biopsy with overnight hospital stay, the surgical port procedure, and finally my first chemo treatment. This all happened within 3 weeks. 3 weeks of non-stop appointments, procedures, and biopsies. 3 weeks was all it took to change everything. 

Before I continue, I think it's important to learn a little about Hodgkin's lymphoma. The American Cancer Society breaks it down perfectly.

Here's a wonderful summary:
  • Lymphoma is a blood cancer. 
  • There are 2 main types of lymphoma: Hodgkin's (HL) and Non-Hodgkin's (NHL).
  • The lymphatic system is part of our immune systems. It helps fight infections and controls the flow of fluids in the body. 
  • Hodgkin's lymphoma often spreads through the lymph vessels  from lymph node to lymph node. Later in the disease, it can invade the bloodstream and spread to other parts of the body including bone marrow.
  • There are 4 types of  Classic Hodgkin's lymphoma. The specific type that I have is Nodular Sclerosis Hodgkin Lymphoma (NSCHL).
Enough of the boring stuff. Because NSCHL has spread to my bone marrow in my lower back and pelvis, I am considered to be stage 4. Before you freak out (as I first did), it's SUPER important to understand that Hodgkin's is equally as treatable at every stage! It is one of the most treatable cancers (over 90+%) even at Stage 4. So, you can begin your sigh of relief. 

To help ease your mind, it's also important for you to understand that I fall into the favorable category of Stage 4. This is because I am a woman (girl power), I have no previous medical history, I am VERY healthy, I have good protein levels, etc. 

Now that you hopefully have a basic grasp about my diagnosis, I want to share some information about my treatment. Chemotherapy is the main treatment for most people with Hodgkin's. Chemo drugs enter the bloodstream and travel throughout the body to reach and destroy cancer cells. Chemo for classic Hodgkin's lymphoma combines several drugs because different drugs kill cancer cells in different ways. 

ABVD is the most common regimen used in the United States, and it is my chemotherapy drug concoction. My treatments take place once every 2 weeks. After 4 treatments of chemo, I will get another PET scan that will determine the following 4 months of my treatment. My first round of chemo started on Monday, May 13th, and (I know I sound crazy) but I loved every minute of it. The nurses were so nice.  I was relaxed in a recliner. It was oddly comforting being surrounded by others getting treatment.  I was also excited to get the ball rolling. I welcomed the ABVD into my body with open arms because I need it to start working its magic. Like now.

Although I was excited for my chemo treatment, I was not excited for what was to follow. The chemo definitely took a toll on me. Unfortunately, chemo kills good cells in order to destroy the bad ones, so many people suffer from a variety of side effects. The next 3 days following treatment were marked with fatigue, complete appetite loss, and minimal nausea. However, I am happy to report that after a few days my appetite came back, and my fatigue slowly lessened. Physically, I've been feeling better every day. Mentally, I've been improving as well. Yes, some days are bumpier than others, but overall I'm getting stronger every day. 

If you're still reading this, I'm very impressed. You must really love me. Because it is hard for me to frequently update everyone individually, I've decided that I'm going to post daily on this site. I'll post updates on both my physical and mental health, as well as anything that pleases me. I hope you find comfort in these blog posts, as they are a fun way for me to vent my thoughts in an organized manner.

Again, I love you all so much. Your love and support means the world to me. The more people on my team saying 'FU' to Hodgkin's, the better.

​I'm going to get through this one day at a time. One lame blog post at a time.

All my love,
Lia

16 Comments
Mary
5/22/2019 08:15:03 pm

I love you, Lia! You are the strongest
person I know. Looking on the bright side, we get to spend a lot of time together this summer. ❤️

Reply
Maribel
5/22/2019 09:54:05 pm

You are a rockstar and you got this. The girls and I love you! Your family is with you.
Mia, Kate, Grace & Emma

Reply
Sierra James
5/23/2019 06:29:08 am

Oh My God Lia, this is absolutely amazing!!! ❤️ I love this so much darling!! Keep on pushing and keep trying to maintain that outstanding positive attitude!!! One day at a time always 🌞💛💛

Reply
Tony
5/23/2019 04:12:26 pm

Hi Lia,
Your blog reminds me of how strong and beautiful you are. FU Hodgkins indeed ... you have so many family and friends joining you in this sentiment.
We all love you.
Tony, Joanie, Joe and Andrew

Reply
Tracy Stevenson
5/23/2019 05:11:27 pm

I’m so glad you are writing a blog about your journey. I really care about how you are doing and it’s wonderful you can put it in words. I am inspired by how you are facing this head-on with such courage. You are ‘rocking’ your new shaved head look! You are stunning Lia!
❤️Love, Tracy

Reply
Joan Pearlman
5/23/2019 06:43:59 pm

What a wonderful blog! You rule, Lia!

Reply
Amelia
5/23/2019 07:04:01 pm

We REALLY love you, Lia! I’m absolutely amazed at your grace, maturity, and spunk as you conquer this. We are with you. 💕

Reply
Ruth
5/23/2019 07:19:17 pm

What an amazing post. You write so clearly and positively and explain everything so well even as you are figuring it all out yourself. Keep the posts coming and know that your supporters are many and you may not even know them all!

Reply
Colleen
5/23/2019 08:06:38 pm

Hi Lia,
I don't know you but I know your mom and after reading this, I see why your mom is so proud of you! You rock.
Stay strong. ❤

Reply
Joanie Sartorio
5/23/2019 09:10:33 pm

You are a great writer which I knew already based on reading other things you have written over the years! You had me crying and laughing at the same time. Thinking of you every day Lia!! Can't wait to celebrate with you when you have kicked cancer's ass!!!

Reply
Jill
5/24/2019 10:55:31 am

Lia,

I work with your mom and have been rooting for you since I heard. Your writing is jut as beautiful as you are! You GOT this!
xoxo

Reply
Alyssa Carr
5/24/2019 11:03:04 pm

You got this Lia. You are so strong and I know you will get through this. Sending all of my love❤️

Reply
Sandy Lizaire-Duff
5/25/2019 06:20:26 am

Girl power all the way! You've got this Lia! I work with your mom.

Reply
Diana
5/26/2019 03:07:22 pm

Write on! Right on! Beautiful, beautiful, beautiful, beautiful, Lia. We love you!
Diana, Lars, Ross and Skye

Reply
Ruth
5/30/2019 09:21:35 am

It is truly remarkable the way you convey your experiences in this tough journey. How wonderful that you have the support that you do but your irrepressible optimism helps people feel good to support you.
I was surprised to read that you did solo chemo this time because in your first post you mentioned the camaraderie of being with others sharing this experience. It’s strange isn’t it how a new challenge can cause us to choose new behavior! Like choosing to be more sociable.
As for those people who look askance. Many of them have no direct experience of what you are going through and are probably astonished that you are not curled in the fetal position 24/7. They are afraid they will not have your perspective when they face a challenge too. You are showing them what is possible!

Reply
Lynn H. Slotkin
6/6/2019 08:17:29 am

Stay strong, beautiful girl!

Reply



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    Hi, I'm Lia. I have Hodgkin's lymphoma, but Hodgkin's lymphoma does not have me.

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