TheEvilyn8's Journey:

Patient: Hodgkin Disease

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: about 6 years ago, Female, Age: 49, Stage IV

  1. 1
    about 5 years ago
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    Diagnosed

    Oh No

    When I first started getting the symptoms (unknown to me it was symptom of cancer) it was December of 2010. The entire year of 2011, my sensitivity to drinking alcohol was never a red flag to me or my doctor. I told them I had developed a burning sensation in my chest and neck area when I drank and that I felt horrible and almost like I was dying. They never caught on! In October of 2011, my husband drove me to the emergency room at 1 am with my daughter in tow. The pain in my chest was a 'bend over and I must be dying' pain. It did not take long before the doctors said an MRI would clear things up. My husband and daughter left the hospital at my request so that my daughter could go to school the next day, 'just in case'. Well mothers instincts right again - I was alone when the doctor on call gave me the news, "you have a large mass in your left chest cavity that includes your lung"....Time stood still. I felt like the seconds were minutes...I shook my head and asked him to repeat himself. I could not believe what he was saying to me...did I hear it right? I was alone for almost 2 hours after that, numb and alone. I didn't want to call my husband and tell him 'this' over the phone...so I sat there in that bed...alone and being torn up from the inside out. It was about 830am October 14th when my husband came to see me. "Sit down Alex, I said"..............That was my "Oh No!"

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  2. 2
    about 5 years ago
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    Surgery

    Procedure or Surgery

    After being diagnosed with a lung mass and having gone though biopsy after biopsy with no TYPE being confirmed, I met with a surgeon who gave me the best advice. He said lets stop poking around and just get in there and find out what the heck it is. On November 16th, 2011 I went into surgery and woke up in ICU with a lobectomy (removal of my upper left lung lobe) and a diagnosis Classic Hodgkin's Lymphoma. The recovery was brutal with two chest tubes and a nice slice starting from my shoulder blade to the underside of my armpit area.(Exactly like the one from Breaking Bad the show!) ICU was easy, I was on auto drip Morphine...but when they stopped the auto drip and I had to move and be medicated manually by nurses each few hours...lets just say I wanted to DIE! The pain I felt was unlike anything I had ever felt before. I was in the hospital for over a week recovering and when they sent me home, it took several weeks before I could bathe or do stuff on my own. I would never want to feel the pain of chest tubes again!

    Went as Expected: Neutral/NA
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  3. 3
    about 5 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    My port was a breeze, it was done as outpatient and I was sitting at CULVERS eating a burger right after I came out of surgery! I know crazy but my husband and daughter were hungry and so was I...so it was a yummy way of starting my recovery. My port was placed very low, actually its on my breast area and although I found the location annoying...its turned out to be no big deal. I still have my port now even though I finished chemo a few weeks ago. My Oncologist is recommending to keep it in until we are completely certain I'm out of the line of cancer fire.

    Went as Expected: Neutral/NA
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  4. 4
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    The standard for Hodgkin's Lymphoma is 12 rounds of ABVD chemotherapy. ABVD consists of four main drugs, one of them is called the RED DEVIL and is used in breast cancer patients too. "ABVD is a chemotherapy regimen used in the first-line treatment of Hodgkin lymphoma, supplanting the older MOPP protocol. It consists of concurrent treatment with the chemotherapy drugs: Adriamycin (doxorubicin/hydroxydaunorubicin, the H in CHOP) Bleomycin Vinblastine Dacarbazine (similar to procarbazine, the P in MOPP" All I can say is from the inception of this cancer I did not fall into the category of normal patient. I was sick, very sick and for at least 6 days after each treatment. I was given all the normal nausea medications but nothing helped. You could usually find me on the couch for the first 2 to 3 days, only getting up because I had to! The whole concept of water, gone forever! Water tasted like I was licking the inside of a metal pipe, no matter what water I tried to consume. I was usually very dehydrated because of my inability to drink. So I would find whatever worked that week for me, sometimes it was chocolate milk, ice tea or even orange juice! Since chemotherapy is progressive, the first few were ok but by chemo 3 I was really feeling the effects and it was all downhill from there. I hit "The Wall" at chemo 8 and 9, I wanted to die! Physically my muscles had atrophied and after being so dormant all the time, my energy levels were near nothing. Since chemo made me so sick, it effected everything, my family life, my personal view of myself, and most of all our home...Dust bunnies ran free, laundry got done when things were 'running out' and dinner suffered most of all I think. Easy dinners from fast food restaurants, anything I could heat up quick. I completely relied on the flexibility of my family and friends who could donate dinners etc. No one planned for this, nobody told me I would be this sick for this long, nobody! After Chemo 12 was done, I felt relieved but people think there is euphoric thing that happens but it does not, at least it didn't for me. I am still waiting for the euphoric feeling...

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  5. 5
    about 5 years ago
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    Relationship issues

    Oh No

    I will keep this one very simple...Somewhere out there, there are statistics...I think its 8 out of 10 marriages crumble during the cancer journey. Get help before this happens. No one is immune from this...cancer is like a cloud of illusion that makes everything seem just out of reach. The resolve, get into therapy before you start treatment, during treatment and after treatment. Find support groups online like Imerman Angels or Cancare. Read magazines like CURE. I had to learn this the hard way, not even love lives through cancer, love dies and has to be revived several times before you can count on the steady beat filling your heart again.

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  6. 6
    about 5 years ago
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    External radiation

    Radiation

    After I finished my chemo, I really thought I had this in the bag. I said to myself, I have been clean, scans clean since my 6 month check up. Then again when I was scanned after chemo...why would I need radiation? I was told in September that I needed to do 17 rounds of Intensity Modulated radiation (IMRT). So on September 13, 2012 I entered the radiation center and began my journey. So far I have had to stop radiation just once after #10 because I got some kind of inflammation in my radiated area and it felt like a knife from the inside to outside. They put me on steroids (whatfun!) and the inflammation when away. It came back again after #4 more treatments and doctor gave me more steroid pills. I have to tell you while I was on chemo I maintained a range on my weight but now during radiation and no chemo with added hunger from steroids...I have gained 10 pounds and I'm trying to keep it at that. Radiation for me has been a breeze even with the complications. While receiving the treatment I don't feel it happening and its pretty fast about a half an hour from start to finish. I warn you the noise from the machine drives me nutz but so did the MRI machine! I have 2 more treatments and then I'm done. Not sure what happens after that.

    Painless Experience: Disagree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Neutral/NA
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