Hodgkin’s Disease

Hi, I’m Jenny, and I am a cancer survivor.

If you’d like to read about my year journey running through cancer, here’s the essay I wrote (it’s on my homepage; you can click the link at the bottom to come back to my blog). It’s my reasoned reflections on the whole cancer journey and process. If you’d like more general information on my cancer, you can keep reading here instead.

People say having cancer changes things and how you look at life. It does. When I tell people this, many ask me to impart the wisdom gleaned from the experience of being diagnosed with cancer in my mid-20s and undergoing almost a year of chemotherapy. At a loss for what to tell people, I finally drafted this. This is how you should live your life, so when it ends, people can say this about you:

The flame within you, your spirit that spurred you to exist so ardently, will always burn bright. And although when you take your last breath you will indeed vanish and shuffle off this mortal coil, that smoldering ember within you will not be quenched. Your spirit will blaze forever in the memories of those who knew you, for the strength and power of the human spirit is mightier than all the armies of the world.

That is the way you should live your life, whether your time on this earth is set at only a few days or for seventy more years.

Why I write about Cancer

Chemotherapy or a cancer diagnosis is utterly terrifying to contemplate for anyone. Nevertheless, when I was diagnosed I started browsing though cancer blogs and discovered that there were others out there who had made it through and survived. That spurred me to fight and gave me hope. If my blog spurs one person to fight, or gives hope to just one person, well, then, my sharing of a hellish and intimately personal experience is worth it.

What you’ll get here

If you begin searching through my Hodgkin’s Disease Category (which is here), you’ll get a mostly unedited version of what it is like to go through chemotherapy from the perspective of a 26 and 27-year old female. I’ve edited almost nothing from it’s original content.

As you’re reading about my original thoughts at the time, please do know that you’re not going to be reading a tale of sunshine and puppy dogs. I had cancer. Cancer is not fun. Chemo is not fun.

Nevertheless, I hope by realizing a real person — a real person who was more than just a case of Hodgkin’s Disease, who thinks about more than just cancer, who loves history, who loves running, who has a family and friends — made it through, maybe you can too.

About Dr. Hodgkin’s Cancer

If you see Dr. Hodgkin, tell him he can have his disease and all of it’s horrible side effects back!

The date was February 14, 2007 (yes, I marked Valentine’s Day with a cancer diagnosis). The official word: I had a blood cancer known as Hodgkin’s Disease. I was 26 years old, a newly practicing lawyer, and an avid runner with a strong interest in Civil War history.

Who me? How can I have cancer? I can run over 70 miles per week! I’m only 26! Twenty-six year olds don’t get cancer! Anyway, I feel fine.

OK, so that last one was a lie, a bit of denial upon my part; by the time I was diagnosed my face and right arm were puffy from one of my chest masses crushing my superior vena cava. (I was still out running, though. But even that was tinged with denial as I had been watching my pace creep higher and higher for months.)

You’ve probably never heard of Hodgkin’s Disease, and it’s one of the few cancers that is not obvious from the name what type of cancer it is, so let me explain a little bit about it. Hodgkin’s Disease is a blood cancer that effects the lymphatic system (officially, Hodgkin’s Disease is now known as “Hodgkin’s Lymphoma”). It is named for a famous British pathologist, Thomas Hodgkin, and it’s known as “Hodgkin’s Disease” because throughout it’s long history, there were debates over whether it actually was a neoplasm or whether it was some kind of fatal infection.

Hodgkin’s Disease is fairly rare (about 8,000 cases per year), but paradoxically it is the most common cancer found in young adults. As a rare cancer, Hodgkin’s Disease receives very little in the way of funding. Although it was one of the first cancers to be cured even in advanced stages, approximately 1,000 people still die each year from it and the current treatments cause severe, lasting side effects. That is why we need more effective treatments for this misunderstood cancer.

Jenny’s Interesting Medical Journey to a Hodgkin’s Diagnosis

Most people are diagnosed with Hodgkin’s Disease the way my father was diagnosed with Non-Hodgkin’s Lymphoma — through a lymph node popping up in their neck. Me, not so much. I spent about a month as a medical mystery. I’ve found doctors find how I was diagnosed fascinating, and lay people want to know too, so I’m going to give some details.

My problems began in November 2005, right after I received my bar exam results. The first symptom was I noticed I was struggling on my runs. Nothing specific, just I’d get out of breath a little easier. Then I developed a very slight cough, so slight I thought it must be acid reflux or allergies. Soon thereafter, I started having periodic flu-like bouts. They would last a few days and I’d sometimes run a very mild fever, have some light night sweats (never drenching), feel malaise, and have aches in my jaws and back. The symptoms would start like clock work at 4:00 PM.

Lacking much in the way of health insurance, I chose to ignore these symptoms. I figured my wisdom teeth were the insidious culprits as I knew there were impacted. Perhaps they were trying to come in, perhaps they were a little inflamed or infected.

Then Lumpy appeared.

Yeah, I named it.

In February 2006, I woke up one morning and discovered the left side of my abdomen from under my ribs down to nearly my hip bone was hard as a rock. It didn’t stick out, the region was just hard as a rock. Since it was such a large area, and my stomach didn’t hurt or anything, I was baffled. A hernia, maybe? Could it be my ab muscles? I have scoliosis in my back, and I figured it was quite possible the ab muscles were developing more on that side more than the other.

The flu-like bouts continued and I started to have annoying itching on my chest and right side.

Finally, in November 2006, I developed a severe and intense pain in my right elbow and shoulder. The pain did not get better; in fact, it slowly got worse and worse. In January 2007, the elbow and shoulder pain drove me to see my primary care doctor. Almost as an aside, I mentioned the strange side anomaly that I had first noticed almost a year ago.

Lumpy struck my primary care doctor as odd so he sent me for a CT scan. I eventually had CT scans of my abdomen, pelvis, chest, and brain. They showed massive lymphadenopathy in the abdomen, chest, and around the collar bones. When I got the actual CT reports I knew I was in trouble from the term “supraclavicular lymphadenopathy.” All the medical journals I read stated that these were the sentinel nodes (they are located underneath the collarbones), and 95% of the time if they are enlarged, you’re in trouble.

I saw a surgeon at the Main Campus of the Cleveland Clinic. He thought I had Fibrolamellar Hepatocellular Carcinoma, rare liver cancer. He sent me for a core biopsy to confirm. And that’s how on the morning of the huge snowstorm on February 14, 2007, I discovered I had Hodgkin’s Disease.

Now as I mentioned, my father had Non-Hodgkin’s Lymphoma, and he was diagnosed two years prior to me. He has been in remission for 2.5 years after doing six cycles of CHOP-R. When he found I had Hodgkin’s Disease, he called his oncologist who works at one of the regional hospitals affiliated with the Cleveland Clinic. That is how I ended up with “Dr. S” as my oncologist. He managed to see me the very next afternoon.

Jenny’s Hodge Details

When all the pathology and various staging tests came back, the official diagnosis was Stage III-A Classical Hodgkin’s Disease, nodular sclerosis sub-type. My disease was considered “bulky” in the mediastinum and the left abdomen, and I had obvious splenic involvement.

Dr. S turned out to be a pretty neat guy. He’s a runner like me and he has the sort of dignified cool bearing that you’d like to see in an oncologist. He also has a dry sense of humor, and if you learn anything about me from my blog, it’s that I also have a sense of humor, it’s how I cope. Nevertheless, I nearly rioted inside when he told me it would take eight months worth of chemotherapy to hopefully cure my Hodgkin’s Disease. And throughout treatment I kept trying to convince myself that maybe we could do only six cycles because psychologically eight cycles of chemo — sixteen infusions — just was too much to even contemplate. (I’m actually glad I did eight cycles, because I wanted to NUKE Dr. Hodgkin’s disease.)

For the runners, it is sort of like how when you think about just how far twenty miles is, it seems impossible!

The type of chemotherapy I had was called ABVD. It is a combination chemotherapy regimen developed in the 1970s and it’s basically the gold standard for Hodgkin’s Disease. The letters stand for:

• Adriamycin (I call this “The Red Devil”)
• Bleomycin (aka “The Lung Ruiner”)
• Vinblastine (aka “I Seem Innocuous but Watch Me Destroy your Nerves”)
• Dacarbazine (aka “I Come in A Brown Bag and I’ll Make You Sicker Than A Dog Short Term”)

An ABVD cycle consists of two infusions, one on day one and the other on day fifteen. It’s a 28-day cycle. (If you want to know more about getting ABVD, read my what it’s like to ACTUALLY get chemo.) Chemotherapy is really scary to contemplate, but ABVD was actually fairly managable. Not fun, but managable.

Everyone has side effects, of course, but they vary widely, even among those who have the same chemotherapy. My major side effects were nausea and pulmonary problems.As to nausea, that was actually what I was most afraid of. I am an emetophobic (really and have been since I was six). I say with honesty that I never actually threw up. But I came very close during the first treatment and had severe anticipatory nausea by the end.

The pulmonary problems were a result of Bleomycin. Lung problems are common with Bleomycin. Dr. S discontinued it when I started having problems, so my last five cycles were AVD.

Dr. S told me my hair would all fall out, but I think the hairs rallied just to spite him, and I had at least the symbolic victory of keeping most of my hair.

Nausea, hair loss, and lung problems are common side effects from ABVD. I also had some strange ones too. I often suffered from hiccups. I’d just suddenly break out in hiccups. In the more rare side effects category, I developed Raynaud’s Phenomenon, especially in the fingers of my right hand which is highly annoying living in a cold weather place like Ohio. (But also kind of cool because it freaks people out! What’s wrong with your hand?!?!?) The itching was also Hodgkin’s symptom, but it went away with the first ABVD infusion.

The worst part of the whole process was the nausea short-term, and the lung problem long-term. As far as all the tests went, the only one that was terrible was the bone marrow biopsy. Dr. S claimed it “wasn’t that big a deal.” In the interest of full disclosure, I can tell you that it killed. I’m guessing that oncologists say that because no one has ever driven a large corkscrew needle into the back of their hipbone. (So from their perspective it isn’t a big deal.)

One thing I would recommend if you’re getting chemo like ABVD or for a long period of time: a port. A port is a central line device surgically placed in your chest that they use to give you chemo and to draw blood. After one too many questions about my port, I wrote a post about ports, including a picture of my port.

I Ran Through Chemo

Other than having huge masses, an odd presentation, and the fact I still have residual masses ¹ I was a runner prior to treatment and I decided I was going to try and keep running through treatment. I wrote an essay about running through chemotherapy and how much running meant to me.

Ironically, I was so anemic and so sick to begin with that I actually got stronger as my blood counts improved through chemo. Just to give you an idea of my volume, over half way through my long course I went to see Dr. S and he asked me how far I had run this week. I said fifty miles and he almost spat out his water. From that point on, I decided to use “Dr. Spit Take” as a term of endearment for Dr. S. (Dr. S, if you ever read this, I consider this my “payback” for the bone marrow biopsy.)

Only a dedicated runner would find an especial twisted pleasure in running enough to make her oncologist do a spit take.

(I’m always happy to talk to especially runners who survived cancer, so feel free to contact me.)

Medical Tests I Have Had in Conjunction with Hodgkin’s Disease

I am not a doctor, nor do I play one on TV. However, I can tell you about some of these tests from a personal standpoint. The links below go off the website to other websites on the internet that explain these tests and what to expect, but if you’re scheduled for one of these and want the inside scoop ’cause you’re freaking out or nervous or just curious, feel free to contact me.

My rant after one too many tests left me black and blue about the radiology department failing to utilize my port.

Radiology Tests

• PET Scan (On-site check out my humorous take on a famous Civil War author potentially messing up my PET scan — viewpoint you will find nowhere else, I almost guarantee it. Here is also a sample of one of my PET scan reports.)
• CT Scan
• Chest X-Ray (One of my Chest X-Ray Reports)

Blood Tests

• CBC (Complete Blood Count)
  
• Common blood tests used in cancer diagnosis

Heart Tests

• MUGA Scan
• Echocardiogram

Lung Tests

• Pulmonary Function Test (PFT)
• Arterial Blood Gas Test (aka the most horrible stabbing, like, ever)

Biopsy and Diagnosis Tests

• Core Needle Biopsy (site relates to breast cancer, but this is what I had done to my spleen; also note that core needle biopsy is generally NOT used to diagnosis Hodgkin’s Disease or lymphomas. Usually a full excision biopsy where they remove an enlarged node is done instead.)
• I also had a bone marrow biopsy. And it hurt like hell.

Where to go for more information / help with cancer.

If you are diagnosed with cancer, I strongly recommend learning everything you can about your type of cancer. Most of the links below deal with Hodgkin’s Disease or blood cancers in particular, but some of them (ACS, Livestrong, etc) are universal.

• The NCCN Treatment Guidelines for Hodgkin’s Disease … PDF. If have Hodgkin’s and you read nothing else about Hodgkin’s Disease, please at least familiarize yourself with the NCCN’s guidelines.
• The Leukemia and Lymphoma Society (also includes myleoma) … If you are looking for a good cause to support, please consider a donation to the LLS or to the American Cancer Society.
• Lymphoma Information Network
• Medline’s Hodgkin’s Disease Page (loads of links at the bottom of the page)
• American Cancer Society
• Livestrong
• Planet Cancer
• I’m Too Young For This (for those under 40)
• NCCN Clinical Practice Guidelines in Oncology (a great resource for many types of cancer)
• National Cancer Institute - cancer.gov (research clinical trials and treatment options for all cancer types)

“We rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character, character, hope. And hope does not disappoint us.“

1. My radiological abnormalities include: an enlarged spleen (but not palpable), a very slightly enlarged liver, pretracheal node measuring 1.7 x 1.9 cm, right paratracheal node 2.6 cm x 1.8 cm, nodal mass in the AP window region measuring 2.1 x 4.5 cm, anterior mediastinal mass 4.3 x 1.7 cm, subcarinal nodal mass measuring 2.4 x 3.3 cm, right hilar nodal mass measuring 3.9 x 3.1 cm (this is a calcified mass), right infrahilar nodal mass measuring 3.5 x 2.4,groundglass opacities through the right lung, periaortic node 8 x 16 mm. All of these abnormalities score a less than 1.5 SUV on PET scan, which means they are presumably, hopefully, scar tissue. [↩]