TheEvilyn8's Journey:

Patient: Hodgkin Disease > Classic Hodgkin Disease

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 5 years ago, Female, Age: 49, Stage IV

  1. 1
    • TheEvilyn8
    • Experience with Classic Hodgkin Dis...
    over 4 years ago
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    Surgery

    Procedure or Surgery

    The Upper lobe of my left lung was removed in the discover operation that finally gave me the answer of what the mass in my chest was...Hodgkin s Lymphoma. I was one of the lucky ones, if that is even applicable to a cancer patient. My surgeon removed as much of the mass as he could along with the upper lobe without ever having to break one rib. The scar is visible as its on my back, when wearing tank tops and I assume bathing suits. Overall I guess I have to be accepting that its just part of what happened to me.

    Went as Expected: Neutral/NA
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  2. 2
    • TheEvilyn8
    • Experience with Classic Hodgkin Dis...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I was one of the rare cases I think? Nothing helped with the nausea that came along with my ABVD regimen. The chemotherapy itself was the easy part...the side effects, the nausea became the unbearable part. I was prescribed everything possible to reduce the effects, everything that was legal but nothing helped. The effects were only blanked for a few hours. The horrible metal taste in my mouth all the time, the 6 to 7 days of nausea that followed each treatment, the constant emotional 'anger' that steroids brings on...all of it was horrible! Nobody warned me about the 'roid rage' and the emotional withdrawal from both spouses and family that comes along with it. If anyone ever asks me, what can I do before I start chemo, I will answer, see a therapist with every family member included.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  3. 3
    • TheEvilyn8
    • Experience with Classic Hodgkin Dis...
    over 4 years ago
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    Fertility

    Loss

    Although when I was diagnosed at the age of 43, I still had all my body parts and the ability to have children...of course that is not an option after chemo. The emotional fight within me...I was fertile now I'm not, the choice was mine, it was taken away - Its an emotional fight that goes on everyday inside me...regardless of the acceptance that I now have of my cancer.

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  4. 4
    • TheEvilyn8
    • Experience with Classic Hodgkin Dis...
    over 4 years ago
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    Chemo brain

    Side Effects

    CHEMO BRAIN, I heard of it but never did anyone explain just how 'foggy' I would be. I would sometimes feel like I was having an out of body experience, not even remembering what I had just said to someone. And never mind trying to forget details of things like appointments and names. I was always bad with names anyway but chemo made it so much worse.

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  5. 5
    • TheEvilyn8
    • Experience with Classic Hodgkin Dis...
    over 4 years ago
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    Taste change/loss

    Side Effects

    Forget everything you know about food, the tastes, the textures, everything changes - or at least it did for me. I learned that water now had to come bottled, no faucet or filtration system could get me GOOD tasting water. And after my treatments I couldn't even put water to my lips because it was so horrible. And of course they tell you to drink loads of water to help you through the chemo and to avoid dehydration, but I just couldn't do it without feeling sick. So alternatives were, ice tea (until I got sick of that), orange juice, apple juice, anything flavored basically. In the end, organic chocolate milk was my savior and I still drink it.

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  6. 6
    • TheEvilyn8
    • Experience with Classic Hodgkin Dis...
    over 4 years ago
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    Depression/Anxiety

    Side Effects

    Nobody like to talk about this subject, but the reality is that it comes on slowly and creeps up on you...you don't realize you are in a full fledged break down until its almost too late. This is how it happen for me and my family. Therapy is great way to release some of the frustrations, emotions, fears, anger, down right I CANT LIVE ANYMORE feelings...Highly recommend to start at the beginning of the diagnosis - Don't wait!

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  7. 7
    • TheEvilyn8
    • Experience with Classic Hodgkin Dis...
    over 4 years ago
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    Hair loss (alopecia)

    Side Effects

    My hair loss was one of those 'miracle' stories. I held on to some of my hair all the way through the 12 chemo treatments of ABVD. Most people loose their hair after 3rd treatment or so I was told. After chemo was over, I decided to cut my hair short like pixy short so that no matter what happens next, I'm ready. Wigs are great, I have 2 of them...only thing is when its hot outside your head cannot STAND a wig, no matter how 'breathable' the wig claims to be. I didn't like the head scarf look on me personally, so I went for the HAT look instead. I think it was easier to put on a hat, allowed me to stay fashionable and cute and I get to keep them and use them even after this journey is all over...BONUS!

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  8. 8
    • TheEvilyn8
    • Experience with Classic Hodgkin Dis...
    over 4 years ago
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    Money

    Oh No

    Money makes the world go round...LMAO - Money you can't live without it! Don't wait until its too late to realize you need help. Engage the conversation with family first then friends. We started a donation website and it has paid some of the bills that wouldn't of been paid without it.

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  9. 9
    • TheEvilyn8
    • Experience with Classic Hodgkin Dis...
    about 4 years ago
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    External radiation

    Radiation

    I was one of the lucky ones....if lucky is what we can call it. I was given 17 rounds of Image-guided radiation therapy (IGRT). The treatments were relatively painless until the area I was getting radiated got inflammation. The pain was unreal and unbearable. So much so that I was given steroids and treatment was stopped twice during the process over the inflammation episodes. Make sure you find out how your insurance will handle IGRT, I am still fighting with mine to settle up the bill. This is the part that nobody warns you about...how much treatment can really cost in the end. Not a dime left in the piggy bank.

    Painless Experience: Disagree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  10. 10
    • TheEvilyn8
    • Experience with Classic Hodgkin Dis...
    over 3 years ago
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    Relationship

    Loss

    No one ever wants to talk about the personal stuff, but I will. During my battle with cancer, my spouse of nearly 15 years, decided he was no longer in love with me. He has since left our family and the hardest thing for me has been just one thing...WHY? He once told me, Where were you?"...and my response, "Fighting cancer!!!"...that apparently wasn't the right answer to him. I have learned (slowly) that is was not my fault, it was his choice to do the things he did and the way he did them and I cannot change that. Only he can right the wrongs he's done. He can take that up with God himself because, I do not want to hear excuses!!! I was strong enough to hold up my entire family while sick and fighting for my life...Forgive me for strength??? No....I am a FIGHTER and I FIGHT ON!!! So the moral to this rank...take care in following your intuition...because its always right! Mine was!

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