I'm back and still fighting

JanJan63
JanJan63 Member Posts: 2,478

Okay, I stopped coming on here because things had become so bad for me that I felt I wasn't able to offer any positive support or help. My cancer had spread to my other lung, my liver, and it's also in my bowel again. They'd removed some from my bowel in September during the surgery for the 3 fistulas I had. I was sick every day, depleted. weak, could barely walk to the kitchen from the bedroom, and was just depressed and fed up. I was shaky, would almost pass out if I stood up too fast, couldn't do anything for myself. How could I be positive for others when it had finally gotten me? 

I went back on the chemo that's done something to me every time I'd tried it. I'm supposed to have 6 rounds but the most I'd managed was 4. It put me in the hospiatl the last time and I'd never fully recovered from the sepsis in over a year. I was scared but it was my only option. It's Panitumumab, an immunotherapy treatment that's not actually a chemo. Instead of going in and killing a bunch of cells with the hope that it gets enough cancer cells, like chemo, and making the person open to any bacteria because it reduces the body's ability to fight, this targets the cancer and tells the body to go after it. I'm sure most of you know that the problem with cancer is that the body doesn't recognise it as an issue, it doesn't fight it on it's own, it doesn't know that it's bad. So it just let's it grow. This stuff tells my body to kill it. It's supposed to be the future of cancer treatment. But it's not for everyone, for some it's ineffective. My tumour was tested. I don't know if this happens with everyone but where I live the tumours are kept at a facility for future testing, if needed.

The downside of this treatment is that the chemical or whatever is in the tumours that the treatment identifies is also in the skin of the face, scalp, and torso. In the past my face has been a mess. It also goes after other soft tissues like the crotch, behind the knees, areas like that. This time it's been much less of a reaction. My back is like sandpaper, it's so dry, and has the rash. So does my chest and upper abdomen as well as my shoulders. My face has some bumps and the skin looks rough but it's not embarassing to go out anywhere. It's on myscalp, too, but who sees that? 

I know they cut back on the dosage I get because I losy 50 pounds when I was so sick, maybe that's why it's not bad this time? No idea. I was a little worried because it's not bad on my face and the rash indicates how well it's working. But- my original CEA was 57, after the first treatment it went down to 44, and after two it went down to 27. Iv'e had a third one since and will find out next week what it's fone down to. I have to have magnesium with every treatment because it's making that low which apparently can be a side effect of it.

Here's the thing. I'm finally feeling stronger. The week before last I had a really bad day, throwing up, so weak, just sick of it all and fighting so hard. That night, right before I woke up I had a dream that I was normal. When I woke up I still felt it. Then I realized and started crying. Once I got that out I had an epiphany. Everyone says I'm so tough and so strong. I felt like I was, too. But I suddenlt realized that while I put up with the treatments, I'm just waiting to get better. I'm not really doing anything about it myself, just followiing the program. I resolved that morning to get myself better. My whole way of thinking changed. I started exercising. Not much at all, I'm terribly deconditioned, but I did what I could. I got out of bed and started looing after myself as much as possible, which was exhausting, getting a drink made me short of breath. But in my mind I was going to get better. I could feel it and I miss it so much. Just walking somewhere by myself. Being independent. Now, a couple of weeks later I'm a little better physically and mentally I'm superwoman. I plan to beat this $hit, not lie around hoping I beat it.

I will ride my horse, I will drive my car, I will go to the store by myself, I will have a life for whatever amount of time I have left. My doctors are amazed at how much energy I have now. My forst chemo treatment my husband had to take me in a wheelchair and I could barely get up the steps in our home when we got back. The second treatment I walked but I was slow and wobbly. The third treatment I walked briskly to the treatment area and joked with another patient. I'm feeling awesome. I made dinner the other night and cleaned up afterwards. There's so mcu more I am able to do.

I do think the magnesium helps but I also think I've just changed my way of thinking and am being proactive, not a victim. I loathe being a victim of anything and hate being weak and having people pity me. I'm now excited about the future! It's been a year and a half since I've felt this way!

If you've read all of this, kudos to you! I can be quite a babbler. But I'm so excited and I want whoever is reading this to know that they can do it, too, if they're feeling down. And to explain my absence from the forum for so long. I want all of us to be healthy and well but if that's not possible I want all of us to at least enjoy what time we have left. Even if cancer eventually takes us, it should not take our lives until that time. I've also seen some positive things about potential cancer treatments lately. Cheers to all of us for being the fighters we are! We rock!

Love and hugs!

Jan 

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Comments

  • Tunadog
    Tunadog Member Posts: 235
    Glad you are back at it..

    I’m back on Xeloda and Avastin. I was off it due to major infection.

    Good to hear from you.

    Good Luck

  • Ruthmomto4
    Ruthmomto4 Member Posts: 707 Member
    This is wonderful news!

    i am so happy to see you are feeling better and more positive! You are crazy strong and a fierce warrior! You are inspiring! Xoxo

  • ann63
    ann63 Member Posts: 20 Member
    I’m so happy you’re back. You

    I’m so happy you’re back. You are such an inspiration!

     

     

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,293 Member
    Welcome back

    Welcome back, Jan.  It is great to hear about your new energy and attitude.

  • ron50
    ron50 Member Posts: 1,723 Member
    Hugs mate

       Wishing you well, your tenacity amazes me xxx Ron.

  • flutemon
    flutemon Member Posts: 41 Member
    Wow!

    I'm new here and all I can say is you are AMAZING and inspiring.  I'm stage 4 but haven't really felt bad or struggled.  Waiting for the other shoe to fall.  I hope I can follow your example!

  • myAZmountain
    myAZmountain Member Posts: 417 Member
    Wonderful post from a warrior

    Wonderful post from a warrior!  So glad you are feeling stronger and have more energy and are bouncing back! Never stop fighting.

  • Canadian Sandy
    Canadian Sandy Member Posts: 737 Member
    So good to see you back on

    So good to see you back on the forum.....its great that you feel better and have more strength to fight. Keep the faith my friend!

  • Kazenmax
    Kazenmax Member Posts: 458 Member
    That a girl! In your face,

    That a girl! In your face, cancer! You can’t keep a good woman down! 

    so happy you are doing better!

     

  • Diane_K
    Diane_K Member Posts: 84 Member
    You're my hero!

    You're my hero!

  • JanJan63
    JanJan63 Member Posts: 2,478
    You guys are all so sweet! I

    You guys are all so sweet! I'm still feeling really good and pushing myself but not too much. I just got a box out of my closet and looked through it and then put it back and my husband was almost giddy. He gave me a big hug and said how happy he was that I'm getting better and I'm such a tough broad. 

    I've been able to not only make dinner but clean up after twice this week. That's an accomplishment for me. I don't really like cooking but I'm happy to be able to do it. The cleaning up part not so much, ha ha! This week I'm planning to drive my car to my doctor's appointment. Which means I won't have to sit there silently steaming about how my husband drives. Chemo number 4. That's as far as I've gotten in the past before it put me in the hospital. This time I have to get through them successfully. I have travel plans for April! Going to Arizona and the Grand Canyon. I have to get stronger before that and can't end up in the hospital starting over again. I love having something to look forward to! My friend gets amazing deals on flights and hotel and my daughter is coming, too. I just want to soak in a pool.

    Anyway, thank you for the support everyone! I've missed you guys but just wasn't emotionally capable of being on here for a while. Now I'm in fighting form and ready to be a positive contributor again. 

    Love and good health and strength,

    Jan

  • JanJan63
    JanJan63 Member Posts: 2,478
    Ugh, trying to get my avatar

    Ugh, trying to get my avatar back is a PITA.

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,293 Member
    JanJan63 said:

    Ugh, trying to get my avatar

    Ugh, trying to get my avatar back is a PITA.

    Various

    There is a link about the avatar that might be helpful.

    If you are going to Phoenix, you will have a great time by the pool in April, but Grand Canyon can be anywhere from hot to snowy.  I got caught in quite a snow storm out there in April a few years ago.  If you get a chance, be sure to book a night at Bright Angel Cabins on the rim.  It sounds like you have great plans!

  • Trubrit
    Trubrit Member Posts: 5,666 Member
    flutemon said:

    Wow!

    I'm new here and all I can say is you are AMAZING and inspiring.  I'm stage 4 but haven't really felt bad or struggled.  Waiting for the other shoe to fall.  I hope I can follow your example!

    DON'T

    The shoe may never fall, so don't waste time waiting. 

    And welcome!

    Tru

  • Trubrit
    Trubrit Member Posts: 5,666 Member
    Own it!

    Everyone says I'm so tough and so strong. I felt like I was, too. 

    You are! You are! You are! 

    It feels good, doesn't it, when you suddenly see why people think you are strong, wise, special, whatever. 

    Own it, girl!

    I love your dream. Your own personal vision. 

    So glad you are back with us. We all need your strenght. Together we become stronger. 

    Tru

     

  • Joan M
    Joan M Member Posts: 409 Member
    Glad you're doing better!

    Your attitude is amazing especially after all you've been through. 

    Praying for you to have a wonderful vacation with your family! 

    Joan

  • manapart
    manapart Member Posts: 67
    score

    Jan Jan 1

    Cancer 0

  • Annabelle41415
    Annabelle41415 Member Posts: 6,724 Member
    Post

    So glad to see your post even though things have been tough for you.  Thinking about you all the time and glad that you are able to get out and do some things.  Keep your fighting spirit up. 

    Hugs!  Kim

  • SimonYong
    SimonYong Member Posts: 8
    Hi Jan,

    Hi Jan,

    My CEA is 479 and I am still standing and doing all the things I wanted to do

     

    I might be weak at times but I will not let it stop me from spending time with my kids, and trying out new treatments and hopefully one day, beat my cancer into remission. 

  • JanJan63
    JanJan63 Member Posts: 2,478
    Oh, you all make me smile!

    Oh, you all make me smile! Thank you! I like posting things that give people hope. Not to give people hope when there isn't any but as long as we're still here we need it to get through. 

    Or to offer some aadvice or whatever. Simon, that's a fabulous drop! Weren't you over 6000? Wow! Good job!

    What I want in my everyday ife is for people to see that you can have cancer and still enjoy life. That it's not necessarily a death sentence. I don't want anyone thinking about the horrow stories when they hear that diagnosis but instead thinking about people they know or hear of who are living with it or have beaten it.

    Hugs!

    Jan