Friday, June 12, 2009


Had a minor (okay, maybe major) freakout. I'm reading this very helpful guide to Hodgkin Lymphoma. I've now learned that Hodgkin is singular unless when using the term Hodgkin's Disease. In any case, it's put out by the Leukemia & Lymphoma Society and is almost like a car manual, divided in sections like "diagnosis," "symptoms," "treatment." Then came the scary one: "prognosis." 

I had not, until I read this, for once thought of the possibility that I would die from this. The thought literally never crossed my mind, whether I unconsciously pushed it aside or it never came. Every single person has said to me that Hodgkin's Disease is highly cureable. That's even how this booklet starts out: "Hodgkin lymphoma, one of the most curable forms of cancer, was named for the physician Thomas Hodgkin." 

But blazing at me in golden rod and yellow is "Table 5: International Prognostic Factors for Advanced Hodgkin Lymphoma" showing the high-risk factors, the first one being: "the patient has Stage IV disease." It goes on to say that those with low-risk Hodgkin lymphoma (this is not me) in Stage I and II have a 95% cure rate. All along, I thought that I was also in that 95 percentile, but no, I am stage 4B. That's 4 with added risk factors and b symptoms. Fantastic. 

Next section: Advanced Hodgkin Lymphoma (this is me.) I look at the little diagram of the simple bodies in Stage I and II with just a smattering of red indicating cancer presence. Then there's the Stage 4 body silhouette gleaming with spots of red from the neck to the spleen. I read on: "Hodgkin lymphoma is potentially cureable in late stages." Rewind. potentially? potentially cureable? This is when I lost it. Full flood gates open. 

Being a writer by trade myself I know how powerful words can be and this word  stabbed me right in the tumor-filled chest. What a fully loaded word choice ... . Having "potential" is what you tell the dyslexic kid that wants to win the spelling bee or the big girl that wants to win the beauty pageant. This word now echoes through me and I realize the seriousness of all of this. Death had been off the table until just this moment when it really sunk in how far along this cancer is. I know that dwelling on and worrying about one stupid sentence in a poorly worded Hodgkin's handbook isn't going to help my situation but it doesn't change the fact that I'm forced to realize the potential brevity of this fragile life. 

I just can't understand how this could have happened. When did it start? How long have these mutated cells been inside of me and how fast are they multiplying? Was there something I could have done to prevent it?

Now I'm more poised than ever to beat this, whatever stage I'm in and despite what this "international consortium" determined as my prognosis. Hodgkin lymphoma is highly cureable and I am going to be fine. My oncologist says so.  


  1. kar - i know the words are scary, but the reality is that you have most things in your favor, everything except the diagnosis. you're young, healthy, female. all good signs! you ARE going to beat this, there's no question in my mind. statistics are just numbers, and the published ones are actually based on data from years ago (because they had to collect the data, analyze it, publish it...we're always behind). you are getting the best, most modern care around.

  2. You also must consider that the person who wrote and edited that manual could "potentially" be a wee bit of an idiot! I think he meant to write "positively", as in "absolutely, positively curable".


    PS: do you like how when I was referring to someone as being an idiot I automatically assumed it was a "he"? Ooops, sorry boys : P

  3. Karin, there's so much stuff out there about cancer that you just have to sift and pick information that is optimistic. You are not the typical patient: (1) You are young (2) You have always been health conscious and physically fit (3) You eat super healthy (4) You have an amazing husband, mom, dad, sis, family and friends and colleagues (5) You are one of the strongest people I've met; you are the fighter / surviver kind (6) You have a terrific sense of humor (7) You have the ability to find joy in simple things like a pretty tree (8) When have you ever been the typical type? At school, your two page essay turned into a mammoth project with video clips and all (9) I've worked you and I know how resilient and tough you can be under pressure (10) Your oncologist says you will beat this (11) People are praying for you

    Please keep your chin up -- you are doing amazing well.

    You wrote if you could have done something to have prevented getting cancer. Let me tell you that my dad, grandma, cousin -- all got c. All non-smokers, yoga everyday, cheerful and upbeat people. Why did they get it? There is really no answer to that question. We don't know why. That line of thinking will only lead to pessimism and frustration.

    The best cancer-fighting tool along with chemo is a positive attitude, which you have in plenty. Be the Tigger that you are. Don't let Eyores like the one who wrote the manuel get you down.

    Below is a story from NPR about a cancer surviver who wore battle-gear when she went into surgery. This was a battle and she won. You will too. Just stare down the enemy in the eye.


    Morning Edition, June 12, 2009 · Whether you're battling unemployment, financial woes or illness, 68-year-old Dottie Copeland's story should help you stand a little taller.

    When Copeland was diagnosed with cancer 10 years ago, she left the room, found her husband waiting for her and said, "I got cancer. Let's go get a hamburger, I'm hungry."

    Copeland was not going down without a fight, she told StoryCorps in St. Louis.

    "I dealt with it by saying to myself that I would fight this cancer as a boxing match. I loved the movie Rocky. And so I went out and I bought the tape. For two weeks, I played that theme song 24 hours a day. I trained myself mentally," Copeland says.

    And physically: "I would run in place, I jumped rope." Copeland even practiced punching pillows.

    Not only did Copeland get in shape, but she dressed the part. "[The] day before my surgery, I went to Wal-Mart, bought myself a camouflage hat, I bought myself a camouflage T-shirt, and I went to the hospital.

    "I felt so confident," Copeland says. "I felt like kicking the door down.

    "And I walked up to the desk, and I said to the nurse, 'My name is Dottie Copeland, and I'm here for surgery, and I want you to bring it on. I'm ready.' "

    Copeland's doctor even piped the Rocky theme into the operating room.

    Today, she says, "I beat cancer for nine years. Will it come back tomorrow? It sure might. I've got to live my life as if it could end tomorrow — but everybody should live their life that way."

    Copeland says she wants to be remembered as "a woman that had a fighting spirit that raised three wonderful human beings. And I want them to remember that when I do pass on, they can say, 'She was one hell of a woman, and she had one great ride!'"


  4. What did Mark Twain say about lies, damn lies and statistics? You and your oncologist are the ones who are right. Mr. Hodgkin doesn't have a chance with you. Believe it. Rie

    P.S. Your improper use until now of the 's is of far graver concern. A writer indeed. Next you'll start using exclamation points.

  5. Karin,
    Your survival and the amazing way in which you will have done it will make you a phenomenal role model. Can't see you in camouflage outfit, however. More like sexy Wonder Woman! So keep doing the fun, childlike stuff - play with your dog, take naps, jump in puddles, skip, whistle, giggle. And think of the armies of friends who love you and are cheering you on. xoxoxo Judy

  6. Hi Karin---As a survivor I can tell you that too much reading, internet, etc is only going to nerve you up---you will be FINE---I have told you before---you do what they say, you know they are super smart and they all know what they're doing---stick to writing and leave the treatment up to the experts----xoxoxoLove you Bev A.

  7. Hey Karin,
    If you read that stuff too much, you'll begin to diagnose yourself with more than what you have... just stick to your positive ways and your treatments and do exactly what you're doing now. You are doing the best you can do to beat this and that's all that matters. I remember reading about people who had better cases than I did who ended up completely paralyzed the rest of their lives... Statistics are just that. I know you will beat this. This world needs you for a long time, so you aren't going anywhere! Keep fighting!