jazzlady50's Journey with Non-Hodgkin Lymphoma (NHL)

Survivor: Non-Hodgkin Lymphoma (NHL)

Patient Info: Finished active treatment more than 5 years ago, Diagnosed: about 15 years ago, Female, Age: 66, Stage IV

  1. 1
    • jazzlady50
    • Experience with Non-Hodgkin Lymphom...
    over 4 years ago
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    Diagnosed

    Oh No

    I had this lump on the front of my neck. My PCP thought that it was just a cyst until a year later I could not swallow my food! I then went to an ENT doctor who immediately scheduled me for surgery, and he thought that it was small, like a cyst, but it turned out to be a golf-ball sized tumor ... it was cancer! I was very angry ... at my PCP, the world, God ... and then I focused on what I needed to do to save my life, and I told my PCP that I did not trust him anymore and hired a new PCP, and most importantly of all, I asked God to forgive my anger and help me with courage and faith to get through the toughest task of my whole life ... and He did! I had a full body CT scan AND a bone marrow biopsy ... I had cancer in ALL my lymph nodes AND in my bone marrow as well, and that it why my excellent oncologist staged me at Stage IV. My oncologist was only one of God's blessings to me, my doctor was one of the best!

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  2. 2
    • jazzlady50
    • Experience with Non-Hodgkin Lymphom...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    OK, here we are ... in a room with a bed and chair, my choice, and a TV and an IV stand to hold all the goodies! ha ha ha I was scared to death the first day of chemotherapy ... I really did not know what to expect, the doctors told me that they had made many advances in chemotherapy such as giving you Prednisone to control the tummy sickness, etc., but I was never told how totally physically draining the chemo would be, or that for months, and longer, you do not get your physical strength back, and you will never be the same person as you were before, physically. All I did for six months of my life was to eat, sleep and go to chemotherapy ... too tired and drained to do anything else ... but I endured and got through it.

    Easy to Do: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  3. 3
    • jazzlady50
    • Experience with Non-Hodgkin Lymphom...
    over 4 years ago
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    Chemo brain

    Side Effects

    Hair loss, chemo brain, feeling old ... of yeah. I thought that when I start losing my hair that I would just break down and cry, but I didn't ... I looked into the mirror and saw this woman with bald patches all over her head and I laughed! It really did look funny. I was losing my hair right from the start, my head was itching like crazy, and there was hair falling out everywhere all the time, so ... I called my friend (my caregiver) and asked her to come and shave my head ... she thought that I was crazy, but I told her that I was going to lose it anyway so what the heck. It was the best thing that I did, no more itchiing and having hair falling out all over the place. You feel a little awkward at first with a head like a cue ball, but after a short while I felt like, no - this is my testimony as to what I am dealing with right now and going through right now and it is like my badge of courage for everyone to see, to see that it is going to be okay and that I am a survivor and that there are a lot of us SURVIVORS! Your hair will grow back, eventually, but it will not be the same hair .... maybe better, maybe worse, but definitely not the same .... and it's okay. "Chemo Brain" is real ... and it stays with you for awhile, and awhile, and awhile ... ha ha ha You suddenly forget names, places, etc. that you should know without even thinking about it, but you have these "empty train cars" pass by and there is nothing in them when they should contain all the information that you have known since the beginning of time, but they're empty .... and then hours later when you are talking about something completely different, here comes the information that you needed earlier, it just pops up by itself! It is really weird, but funny, and acceptable because you DO have chemo brain. You feel like you really have been through something, kind of like experiencing an all out war, and you HAVE been through something ... a war with cancer. Your body had been through a lot, and at times, you physically feel that you have been through a lot, and you have .... so be kind and gentle with yourself, pamper yourself, it's okay to do that because you deserve it! You are (or will be) a cancer SURVIVOR!

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  4. 4
    • jazzlady50
    • Experience with Non-Hodgkin Lymphom...
    over 4 years ago
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    Remission

    Celebration

    When I finished my 6 months of chemotherapy, my oncologist wanted to do another full-body CT scan AND bone marrow biopsy ... okay ... guess what? Cancer is in remission ... I am okay, I am not at death's doorstep anymore, I can see my little girl grow up ... I can have my little girl (age 7) back home with me. She had to stay 6 months with her grandparents as I could not take care of her and go through chemo at the same time. Oh my God! I am going to be okay ... I could not believe it, but it was true! I have been in remission for 9 1/2 years!! I still go every six months to 12 months for check-ups, CT scans, blood tests, etc., but I am still in remission, I am still battling cancer, you always will be, but that is okay too because we are/will be cancer SURVIVORS!! I took my first cancer survivor walk two months after finishing chemo and I cried tears the entire lap. Guess what? After 9 1/2 years in remission, every time I do a cancer walk, I still cry tears the entire lap ... I cry because of joy and gratitude, because of the struggle I went through, and also because of the ones who did not make it, like my father, my aunt, so many little ones.

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  5. 5
    • jazzlady50
    • Experience with Non-Hodgkin Lymphom...
    over 4 years ago
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    Home care

    Other Care

    My best friend, Stacey, was my home caregiver. My husband, at the time, was a VietNam veteran and in the VA Hospital, and she stepped up to the plate to give me whatever care I needed. You can not do it by yourself, you need someone who is there for you, who helps you and supports you in every way. She was an angel to me, always will be, and I hope that someday I can "repay" her for what she has done for me. She was my cheerleader, my coach, my nurse, my housekeeper and cook ... she did it all! Before I started chemotherapy, I got onto the internet and found out from other survivors about diet, what you should be eating while in chemo, etc. Everyone said fish, seafood, fresh fruits and vegetables, so ... that is what I ate. One time, after about 2-3 rounds of chemo, my oncologist asked me "What are you eatiing?" I thought, oh no, am I doing something wrong? Well, I told him and he asked me where I got that information, and I told him off the internet, and he told me "Keep it up, it's working." So ... eat lots of fish, seafood, fresh fruits and veggies ... NO red meat at all!

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