kmarquis' Journey with Hodgkin Disease

Survivor: Hodgkin Disease

Patient Info: Finished active treatment more than 5 years ago, Diagnosed: almost 29 years ago, Female, Stage II

  1. 1
    • kmarquis
    • Experience with Hodgkin Disease
    about 5 years ago
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    Diagnosed

    Oh No

    I am soooo lucky. I was adopted by a terrific family, my Mom is a nurse who happened to work in chem/onc. when I first noticed the lumps at the base of my neck, she took me to my pediatrician, whom I had been seeing since I was born. She asked, "Do you think it could be Hodgkins?" He replied, "no, she is the wrong gender, the wrong age..." And with no other symptoms, he had no reason to think otherwise. I am sure as a doctor, you also do not want to jump to the worst case scenario. But then when I developed difficulty breathing (a sharp pain in my back from what turned out to be a tumor pressing on my lung), she took me back and asked for a chest x-ray based on the new symptom, with which he agreed. That was when the initial diagnosis was made. However, we made an appointment to go to Children's Hosptial in Pittsburgh "for more tests". At this point, I still had no idea what any of the films showed. Once we met with the surgeon at Children's, he gave me the diagnosis. May I just say, the worst part of that was that my parents knew for about a week and a half before that, and kids are smart. We know something is wrong, and when you don't tell us what, we worry even more! However, I cannot imagine being a nurse and knowing what my child was about to face. In her shoes, perhaps I would have made the same decision, but I hope not. It was actually almost a relief to finally get the diagnosis, know that even though an unpleasant one, that there was treatment that had a good success rate. And then the fun started....

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  2. 2
    • kmarquis
    • Experience with Hodgkin Disease
    about 5 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    I had surgery to get a biopsy done as well as place a mediport as they knew I would be needing some type of chemotherapy. The doctor could not sedate me completely as there was a tumor pressing on my lung and so he used a type of conscious sedation. He assured me I would remember none of the procedure, but as I can NEVER do what is expected, even under anesthesia, I heard and remembered most everything during the procedure. I remember what was said and heard them cutting through the tissue (not nearly as disgusting a sound as what they make it out to be on television!) The staff all seemed really positive and upbeat though, and I had mimimal pain after the surgery. I started my chemo during that hospitalization. MUCH worse than this experience was the hospital food! :D

    Went as Expected: Disagree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  3. 3
    • kmarquis
    • Experience with Hodgkin Disease
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Every two weeks, if my blood counts were okay, I would get up and ride with a family member 1 hour to get my chemo. I always went on a Friday so that I could be sick over the weekend and not miss more classes. Sometimes we would hit traffic on the way home, and the nausea medication would have worn off before I made it home. NOT fun pulling over to be sick at the roadside. I felt bad for my family, as I saw how all of this impacted them as well. They couldn't go through any of it for me, which, as a parent, must be so difficult. Even my baby brother - how scary it must be to see your big sister sick like that. He was so good to me - he even helped me after I had gotten sick at home a few times, cleaning out the basin, as the smell just nauseated me even more. You really have to learn to let people help you sometimes.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  4. 4
    • kmarquis
    • Experience with Hodgkin Disease
    about 5 years ago
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    External radiation

    Radiation

    Although I was younger than some patients, which lessened the side effects, I still lost hair and suffered fatigue. I had to leave classes early every day for this treatment and lost hours of my education. I remember feeling people watching me walk out of class, and it wasn't long before everyone knew why I was leaving early.

    Painless Experience: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  5. 5
    • kmarquis
    • Experience with Hodgkin Disease
    about 5 years ago
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    Allergic reaction

    Side Effects

    What was really great about the chemo is that it was multi-fuinctional. Not only did it make me sick for three days, but I was allergic to one of the drugs and got to take prednisone to counter that for my entire course of chemo. Man, the things that we will do to get healthy! But seriously, my doctors were amazing in that they knew immediately what the problem was, just from the description over the phone. I developed a rash and a high fever from the procarbazine, one of the chemo drugs in my protocol.

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  6. 6
    • kmarquis
    • Experience with Hodgkin Disease
    about 5 years ago
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    Hair loss (alopecia)

    Side Effects

    I lost hair both from the chemo and the radiation. My aunt went with me to pick out a wig for when I needed it - it is amazing how much of my emotions were expressed at that time. I was so tied to staying normal through out my treatment and not missing any of the life I had planned on - I just didn't see how I could do that without people feeling bad for me if I was bald. I think I expessed most of my grieving over the diagnosis by grieving the loss of my hair, as it was symbolic to me of my health and also of my personality. But really it's just hair in the end, and it did grow back! :)

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  7. 7
    • kmarquis
    • Experience with Hodgkin Disease
    about 5 years ago
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    Anemia (low red blood cell counts)

    Side Effects

    I think this was the most disappointing thing in my treatment - every week I went to get blood counts done to see if I could get chemo that week. I just wanted the treatment to be over with!! And it was devastating to have to postpone because my counts were too low. I kept watching the calendar as my first day of college crept closer and closer. Would I be done in time? How would I manage college AND chemo? I was adamant that college not be postponed, despite my parents' opinion on that. While I understood their concerns, I was sure I could make that work just as I managed to keep up with my classes at school during my treatment and managed to stay involved in school activities on top of that.

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  8. 8
    • kmarquis
    • Experience with Hodgkin Disease
    about 5 years ago
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    Finished treatment

    Celebration

    I went for my blood counts for my last course of treatment, hoping that they would be good enough for me to complete the treatment. If not, I might have to postpone college. This also meant losing touch with my friends, and in retrospect, not making the lifelong ones I did while at college my freshman year. So thankfully my counts came back okay and I was able to get my last treatments. And I made sure to get an appointmetn on the books to get my mediport out on a date BEFORE I planned to leave for college! :D even though I spent the next two weeks throwing up, my spirits were really high knowing that this was the end of my treatment and the beginning of my life as an adult all coming at once. Every day I still think I need to do more in honor of the fact that I was so lucky throughout all of this. More to help others, more to make ours a better place to live, just more in what ever way I can. And decades later, still in remission, still grateful to those who were there for me during my diagnosis and treatment, I continue to try and do ... more.

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