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I'm back and still fighting

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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 

Tunadog's picture
Tunadog
Posts: 232
Joined: Mar 2017

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

Good to hear from you.

Good Luck

Ruthmomto4's picture
Ruthmomto4
Posts: 634
Joined: May 2013

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's picture
ann63
Posts: 20
Joined: Apr 2018

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

 

 

SandiaBuddy's picture
SandiaBuddy
Posts: 878
Joined: Apr 2017

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

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

   Wishing you well, your tenacity amazes me xxx Ron.

flutemon's picture
flutemon
Posts: 13
Joined: Jan 2019

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!

Trubrit's picture
Trubrit
Posts: 4826
Joined: Jan 2013

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

And welcome!

Tru

myAZmountain
Posts: 256
Joined: Apr 2018

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

Canadian Sandy's picture
Canadian Sandy
Posts: 491
Joined: Jul 2016

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's picture
Kazenmax
Posts: 349
Joined: Feb 2016

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

so happy you are doing better!

 

Diane_K's picture
Diane_K
Posts: 49
Joined: Jan 2019

You're my hero!

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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

SandiaBuddy's picture
SandiaBuddy
Posts: 878
Joined: Apr 2017

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's picture
Trubrit
Posts: 4826
Joined: Jan 2013

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's picture
Joan M
Posts: 374
Joined: Oct 2016

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

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

Joan

manapart's picture
manapart
Posts: 67
Joined: Feb 2019

Jan Jan 1

Cancer 0

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

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
Posts: 8
Joined: Feb 2019

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's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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

Cyanette's picture
Cyanette
Posts: 8
Joined: Feb 2019

Spring is coming and I can’t wait to play flowers and a garden. 

You gave me hope.  Hugs

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Me, too! I want a veggie garden! And I can't wait to see the perrenials come up. But it'll be some time for that. We've been at -23 to -31 celsius for weeks now and it looks like there's no let up in sight. That's about -9 to -24 Farenheit. Yuck! Even here in Alberta, Canada that's a long stretch of really cold.

What kind of flowers do you have?

Jan

Phoenix_66's picture
Phoenix_66
Posts: 118
Joined: Jun 2017

I told my wife that I really want to plant a vegetable garden this year.  It has been years since I could do it and she is really protective of me not overdoing things.  I may just have to wait for her to be at work.  lol

beaumontdave's picture
beaumontdave
Posts: 992
Joined: Aug 2013

Inspired and inspiring!! So great to hear you come out swinging, Jan. Anyone who reads that can't help but feel stronger by proxy, me included....................................................Dave

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Dave, you're such a sweetie! I'm feeling better every day. I'm excited for the future! I was at the point a few times where I'd be disappointed when I waoke up in the morning because I was still alive. That's about as low as I get. I felt like I had no future. But now I do. I'll go down eventually but I'll go down fighting as long as I can. I'm so glad if this is helpful to people!

I want all of us to beat this or at least enjoy life until we can't anymore. Now if we could just get through this crappy weather I'm going to start walking and ride my horse. It's seriously cold here. We never get it for this long of a stretch. But they have snow in Vancouver, BC and they should have had flowers starting last month. Ick! I thought climate change was supposed to make things warmer. My sister lives in California and they've been cold, for them. For us it would be awesome. She can even see snow on the mountains or hills or whatever they have there. I've never been.

Jan

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I'm pretty sure I haven't told this one before, I hope not, stupid memory. So I had my PET scan in November. My husband drives me to all this stuff in my car. I hate how he drives but try to keep my mouth shut because I'm not able to take myself- yet. The hospital where the cancer clinic is hasn't had parking for a couple of years due to rebuilding the parking lot as a multi level one. So it's easiest to have him drop me off and pick me up after.

So we're driving there and I'm upset because it's a PET scan and I'm scared of the results and I'd like him to go in with me but I have to go in alone. And his driving is particularly annoying that day. I check in and sit in the quite full waiting room and am suddenly overwhelmed with sadness. I start crying to myself. An older woman kindly comes over and puts her hand on my shoulder and asks if I'm okay. I tell her about how just going to the centre is upsetting and I'm scared and all that. She's being lovely and offers to pray for me and says a prayer right then and there. Which makes me more emotional. She asks if anyone is coming to be with me and I start babbling about how my husband is just driving around in my car and how I wish he were there but Im also mad at him for how he drives and so I don't want him there also. The room erupts in laughter. Apparently they'd all been listening in! 

Looking back it was funny and she really lifted my spirits. I've had so many lovely experiences during this cancer bs that it's made it into a positive in many ways. 

Hope you guys find this funny, too! 

Jan

ellend
Posts: 83
Joined: Apr 2016

Jan,

Its truly inspiring to hear how changing your attitude resulted in you feeling so much more energized. I am glad to hear that you are able to do more things you truly enjoy, which no doubt helps you to feel better. I'm also glad to hear you have found joy in life again. I know things have been tough for you and it is hard to keep a positive outloook on life when the treatments take such a huge toll. I applaud you for being able to overcome the adversity and find reasons to smile and laugh again.

Glad to see you back on the forum.

Ellen

SophDan2's picture
SophDan2
Posts: 134
Joined: Jul 2017

I must say, I started to read your note, but didn't finish it (at first). Then as a scrolled down and read everybody's response, I went back and read it entirely. You are a special individual JanJan; all that you have gone through, yet you still come back to inspire countless others. Though we all have some form of colon cancer and can relate, to a degree, with each other, I can only imagine what you are and have been going through. It sounds like you have turned the corner with your thought process, about living your life to it's fullest, how ever long you/we have left.

The problem I have, is that I look healthier than most of the healthy people that I know :) I do believe in planning for my future, but living as full of life as I can today is equally as important to me. It's hard for my wife to understand my mindset (that whole looking healthy thing), about thinking ahead in yearly increments, while she is talking 10 years from now. I totally expect to be here in 10 years, but you never know do you? You just had me thinking from your writings, so thanks again for being you!!!!!

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Iit's so uplifting to receive the support I get from this forum, thank you all! SophDan, I don't blame you for not reading the whole thing at first, it's long! 

I think the final straw for me when I took a break was the expectation that I'd be so much better after the surgery in September and I wasn't. I was actually worse. It was so disappointing.

I wish I could take full credit for my improvement but I think the magnesium helps a lot. I should probably start a post about that in case it helps someone else.

You guys are all awesome! It feels so good to have people I only know on line care about me. And to hear that I'm inspiring is such a compliment! Thank you so much!

Love,

JanJan

Phoenix_66's picture
Phoenix_66
Posts: 118
Joined: Jun 2017

It is great so see you back on here again.  I know we all missed you.

I took a break for a while also.  My onc decided NOT to continue lifelong chemo since I was doing so well and my scans were all clear.  My last maintenance chemo was last September and things looked great for several months even though my fatigue hasn't gotten any better.  I had a follow-up PET done in January and another lymph node lit up near my lung.  They say it is too small to biopsy right now and we will just monitor things for a few months.  My CEA had climbed just a little but was still in the normal range.  To be honest, I am not looking forward to my April follow-up for fear that the cancer is back for the fourth time.  My wife of course is not handling things well (as usual) but we will just make the best of our time between now and then and pray that everything is okay.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I understand that biopsies aren't encouraged due to possible spread of cancer cells. I know my onc will not do it. 

I hope you get rid of the little bugger. We must have lymph nodes all over the place, hey? What the heck are they for, anyway?

Jan

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