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Sun Shining A Little Brighter

mojogirl67's picture
mojogirl67
Posts: 247
Joined: Oct 2018

I had my appointment this morning.When I went to have my blood drawn for labs, the nurse and I had our normal chat. I told her my decision to stop chemo and remove my port. She told me her husband made her promise if he ever was diagnosed, (she's older) that she would not try to push chemo on him. She said she wonders some days why she is there doing what she does. When I started this journey, I left a facility because I felt like a cow being manipulated thru a feeding chute. Today, when I saw my oncologist and told her I was ending chemo, I felt much the same way. She didn't have five minutes to listen to me. She could not tell me why this round of chemo hit so hard and didn't seem concerned with the severe vomiting or other side effects. She did ask me if I would continue at a reduced dose and when I said no, our conversation tanked. I asked about my CEA levels and bloodwork. She didn't have those this morning,  but she sure had my liver functions. ( I know those have to be done before they pump more chemo in) She said mine were off a couple of points but "nothing to write home about". I also asked her about the percentage advantage to putting more chemo in me in respect to recurrence. All she could tell me was she thought my recurrence risk was 65%. She said since I wasn't "on a chemo protocol" that the standard was to do bloodwork and scan every 6 months instead of three. ( I will have my family doctor do it at 3 months for me) I couldn't believe that. As of now, I am scheduled for a scan in July with bloodwork.  All of this just reinforced MY decision to come off of it. All of my interactions with my doctor have been pretty standard with blood tests and weekly chemo so from a medical standpoint, I guess she was "performing" her job. I've read and studied every statistic I could get my hands on both with my husband's cancer journey and also with my own. I'm not a doctor and I realize that, but they are also not Gods and I am also not their significant other or family member that they would read the fine print for. My husband went thru eight rounds of Folfox with a DPD deficiency they never tested him for. ( most doctors don't unless you ask) His body could not process the chemo and it built up in his system. He was 6'4, 225 lbs and went to 140lbs and a feeding tube. That will not be my story. I try to educate myself and advocate for myself regardless of the attitudes physicians give at times. My doctors at MUSC were great and if the time comes for another oncologist to monitor me, I will get a referral from them. At this point, I am going to work on gettting the crap out of my system and repairing my own body as much as I can while living and loving my life. I feel like the weight of the world has been lifted from me and I know that I have made the best decision for myself. This is such a demon to fight and I know what each of you are dealing with...we are human and it is in us to fight to survive. We each have to decide how best to do that. I meet with the surgeon tomorrow to schedule my port removal and then I am headed to my beloved mountains to EAT, PRAY, and LOVE. I wish all of you the wisdom, courage and faith to get thru your own journey with this..whatever that may be. HUGS, M

abita's picture
abita
Posts: 605
Joined: Dec 2017

Why not wait a bit to have the port out. At least for a scan or two.

Msboop15's picture
Msboop15
Posts: 81
Joined: Apr 2019

This is supposed to be my “good week” and I feel like total crap.   I have numb lips and my tongue has felt like it’s been burned for at least 7 days. Even drinking room temperature water can be a problem at times.  This, in addition to all the other neuropathy problems and the increasing fatigue is really causing me to question whether I want to continue.  This after only 3 infusions.

I had a colon resection then 6 weeks later a liver met showed up. The “hope” is the chemo will shrink that and they can do a resection. I am seriously considering canceling my May 6 chemo. I am scheduled for a CT scan on May 16. If the liver met has shrunk & they can do surgery I will probably do that. Like you it’s a quality of life thing...I said that right up front and continue to feel that way  

I honor you for what you did today and I wish you the absolute best in your beloved mountains  

Elaine

 

mojogirl67's picture
mojogirl67
Posts: 247
Joined: Oct 2018

I would hug you thru it until better days if I could. My heart just hurts for you. I know that misery as do most here on this board. Those moments you think will never fade will give way to lessening symptoms for you I pray. One thing that I think made a huge difference for me in the first five rounds was water, water, and more water. It will help to flush it out of your system. Thank you for taking the time when feeling so bad to offer me support..This board is a wonderful place to come to regardless what you are dealing with or the path you choose. I wish you comfort and hopefully a rebound of your spirit and energy soon.. Huge hug your way...M

Trubrit's picture
Trubrit
Posts: 4827
Joined: Jan 2013

 

It is part of your decision. If needs be, you can get another later. 

I am happy for you, and like Ruth, Mr. Happy Dancing Man will arrive later. I’m at the airport, on my way back to 6 inches of fresh desert snow. 

Hugs  ❤️

Tru

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

Mojo, I am glad you are following your intuition, and heading for the sunshine.  If I were in your shoes, I would have the port out as well, but I am particularly finicky about things like that.  Once your body is on the mend, as you well know, there are dozens of steps you can take to optimize your chances of survival, none of which have the side-effects of chemo.  And the title of your post includes a big one--sunshine.  Congratulations on reaching your decision.

myAZmountain
Posts: 256
Joined: Apr 2018

Too! Planning on getting it out next month I can't wait! Never plan to have Chemo again either, can't wait to start lifting a few weights and wear a Camelbak for hiking again!  I think it is wise to keep on 3 month re-scan schedule for a bit too--my surgeon said if something is going to grow back it will probably be in 3 months. So glad you made a decision that you are at peace with! My brother died of Alzheimers, for the last 3 years of his life he was a zombie--I didn't want to espend whatever time is left being a Chemo zombie--I am with you 100%. Senidng love!. 

mojogirl67's picture
mojogirl67
Posts: 247
Joined: Oct 2018

Hoping you are out soaking in life and hiking ASAP with peace in your soul!! Thank you for all of the support you have sent my way and wishing you the best in your own journey down this road!! Hugs, M

Msboop15's picture
Msboop15
Posts: 81
Joined: Apr 2019

Just the idea of wearing a Camelbak makes me smile.  I'm glad you are going to get back to hiking soon.  I miss it so much!  Sounds like you are at peace with your decision, too...I honor that.  We each have to decide what's right for us.  I think if we truly listen to our heart and soul we know.  Best to you...

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

I admire your resolve. You have to do what you feel is best for you. My onc at the time said follow up chemo reduces my chances of reccurence to 65%. So I did it just in case and still had a reccurance.

Here's how I look at it and my logic may be flawed. The stats are that 47% of people will be diagnosed with cancer. So let's round it to 50%. By my way of thinking, that means that nasty chemo is only increasing our odds of not having a recurrence by 15%. I'm probably not looking at things the right way, though. Not sure.

If I could go back in time I wouldn't have done it but I didn't know what I know now. And when it spread I'd have been so mad at myself for not doing it.

Enjoy life every day and change oncs if you're not happy. They hold our lives in their hands, we must feel like they're looking at the big picture and doing what's best for us. My onc tells me what's going on and then asks me what I want to do. If she has concerns she'll say what it is and explain why. If I'm looking at a plan that's doable she'll say so. She once said that if I do the chemo twice a year to just keep the cancer at bay I may lose 6 months to a year at the end of my life. But, those six months will be the last months when I'm dying and I'll have more quality of life now and for the next while. That's what I chose. And then it turned out my cancer is slower growing than they'd thought so I'll have even longer than we thought, most likely.

It's all a crap shoot. We just make the best of it that we can. At least we have the chance to take care of things and do things before we're gone. I think that's a blessing. I'd hate to go in a car accident or something so fast that my family is totally shaken and arrangements have to be made. It also gives me comfort to know I won't get really old. I've always had a fear of ending up in a nursing home or being a burden on my daughter. Or where will I get the money to take care of myself when it comes to that? Our old age pensions here in Canada are a little over $500 a month. Nursing homes are a few thousand monthly.

Anyway, those are my thoughts.

Jan

mojogirl67's picture
mojogirl67
Posts: 247
Joined: Oct 2018

Jan, my thoughts are I am not going anywhere anytime soon. We all die. Our bodies are not meant to last forever and something will take us. I damn sure didn't want it to be cancer but I can tell you it won't be a long miserable death from the effects of chemo for me. If I were a young woman with small children, who knows what I would do when faced with such a beast of a disease. For me, I am grateful for having the time with my husband to have educated myself enough to know some things when I went in to this. I aslo believe that some of the cards dealt are just life and fate that a greater power than me has his hand on. We put ships in space but trillions of dollars are raised and spent on this damn disease and still, so much misery exists with it and no cure?? I call BS!! You are so right. It is a crap shoot and each one of us has to make our call. I don't judge anyone for anything they decide to do to live their life on their terms. Hell,  I said I would NEVER do chemo after going thru all of it with my husband and look at me....I did six rounds. Why? Because of fear with the size of my liver lesions and to get to surgery.The doctors wouldn't do the surgery without me doing the chemo first. The ironic thing is the chemo did nothing to the liver tumors. The colon tumor was affected but then so was most of my digestive track with the crap. The approach of let's pour some more in for good measure and hope it works doesn't cut it for me. Chemo damages your liver without question...even my liver specialist told me that upfront. So to pour more chemo in me 8 weeks after taking off the right lobe of my liver doesn't make ANY sense to me . That's a crap shoot I don't want in on. I have always been healthy, no medications or health issues ever and strong as a ox That mopup round of chemo I did after surgery made me sicker than I have ever been in my life. My weight tanked 8lbs in less than a week....no more...No thank you...Unless you are lucky as hell, most doctors don't pay attention to all of the fall out and details of what's going on with your body like we want them to. You have to be your own advocate or make damn sure you have a good person in place to do it for you. When you are sick as a dog and your mind is in a fog, nothing much matters. I'm not planning to die, I'm planning to LIVE. Who knows if I'll be in their statistics without recurrence? Who knows if I'll be hit by a bus tomorrow? All I know is I feel alive, free and happy in this moment today and I hope each one here finds those precious moments on terms they have peace with. You are an inspiration on this board with your fight and I will continue to keep you in my thoughts and prayers for all the good days you can ride into the sunset with. Hugs, M

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

I'm so glad that you have come to your decision and that you are happy with it and I'm sure right now you are sighing some relief knowing that the doctor didn't want to really give you the time of day without you continuing and you are ready to get your port out and move on with your life.  If the odds are 65% it doesn't mean that's a given.  You are you and can live your life without having that terrible weight on your shoulder and numbers are just numbers and your doctor probably isn't right anyway.  They always seem to quote on the most oldest stats.  Believe me, mine did when telling her that my reading on this board that Oxi could give permanent neuropathy - she told me it was nothing, well it wasn't.  I'm glad for you.  Enjoy getting your strength back and much more enjoy those mountains - they are calling you back.

Hugs!  Kim

mojogirl67's picture
mojogirl67
Posts: 247
Joined: Oct 2018

If I found out tomorrow it was back and surgery wasn't an option, I would still have more peace knowing I'll never have chemo in my system EVER again.I am planning an early trip to the beach for a few days if possible once I get this port out. I have my consult appt this afternoon with the surgeon so hopefully it will be out within the next week. I will be over the moon to look in the mirror and not see that thing staring back at me, lol. My grandson named it "Mr Bubbles" ...I can't publish what I wanted to nickname it, lol...Have a beautiful day!!..Hugs, M

myAZmountain
Posts: 256
Joined: Apr 2018

Pic of your paradise! Hugs and love!

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