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Big Talk On New Years Day Coming

mojogirl67
Posts: 288
Joined: Oct 2018

Hanging upside down in limbo this morning is a weird place to be. I plan oh hiking today and soaking up some fresh air. I know that none of us know when our time is up but I am a realist as well as a dreamer. Hope for the best and prepare for the worst has always been my plan for life and still is. I got a call from my doctor's nurse. The results of my tumor profile are in and he wants to meet with me on New Year's day to discuss all of it. I'm not sure if he realizes I saw his progress notes on me wihich said he gave me 1-3 years "with treatment".  He won't be seeing patients other than regular infusion patients. It's kind of ironice to find myself discussing cancer on the first day of the New Year. This wretched disease has been part of my world for way too long. I am still firm on "no chemo" unless surgery for the lung mets is ever going to be an option. From our last conversation, I don't think it will be. I am planning a trip to Ireland in March with my girls and hoping that I have no obvious symptoms to deal with then. From what my doctor said, he didn't think I would up until a year from now. Who knows how long until things change? I can't really find anything on line from caregivers or patient stories of dealing with progression without treatment and the timeframes involved. At this point, I am "getting my ducks in a row" as far as property arrangements and such. I truly hope when the end comes for me that I am able to remain in my own home with hospice. It's funny when you talk with someone about death. The majority of folks who broach the subject with a ten foot pole and horrible looks on their faces. I honestly don't have that feeling. Am I out of my mind? The thoughts of getting a port and spending every other week in a chemo chair along with blood draws and scans puts fear and dread in me more. I have poured over so much material thru the last year on studies and patients. Nothing on the pages or between the lines jumped out enough at me to change my mind about pursuing treatment. I searched the history on this board and I was amazed at the number of members who started out clear after surgery and treatment for the colon cancer and wound up with mets to the lungs. I saw the words "maintenance chemo" so many times...makes me think of a machine more than a human. Sad part is we are not machines...we are souls in bodies that have to deal with living our crazy beautiful lives in these bodies and what they bring, good and bad. They don't last forever no matter how much "maintenance" we do, lol. I had kinda started making peace with my wrinkles and my reading glasses but cancer threw some curve balls that I wasn't quite ready for. Are we ever ready for the curve balls? I will keep breathing in and breathing out until I can't breath anymore. What comes between those breaths is the life and the moments I have been given. I don't want to spend those moments in fear and dread. As long as I have the choice, I won't. As I walk thru the woods and sit on the mountain today, I will be thinking about all of you and wishing each of you light, love, and strenght of heart and soul to live your "moments" and find joy and peace in each one no matter what it brings.. Huge hug and much love always....M

 

Trubrit's picture
Trubrit
Posts: 5148
Joined: Jan 2013

I truly hope when the end comes for me that I am able to remain in my own home with hospice.

Don't hope, believe.  There is absolutley nothing wrong with believing, even if there is a chance of it not happening. Don't even use the word hope again. 'I will - I am going to - My belief is -'   Find something that works for you, and use it. 

It is the same with your trip to Ireland. No ifs ands and buts, but 'when, and I  am'. 

Plan something on New Years Day. Something beofre your appointment if possible, or after if not.   Maybe not food after. I remember too easily being told the Cancer had spread to my liver. We went out to eat afterwards - becasue we live three hours away from home and Icouldn't just go home -  I literally chocked on the first bite of food, and the waiter rushed over.   Anyway, don't let your New Years Day be dominated by 'the talk'. 

And finally - OK, you know there is never a finally with me.Yak, yak, yak and all that - You have done allot of studying, I won't say too much, but allot. I would suggest no more. You've got the stats, the stories, the information, now just walk away from the computer and live your life, be-it two weeks two years, twenty two years. You can read yourself silly, and still not get anywhere. 

Phew! I'm done. Take it or leave it. I don't need to tell you that we all deal with this differently. 

I will also be hiking this morning. Look, here is a beautiful picture I took up my canyon. There is beauty all around, today and everyday is the time to observe, and let the cards fall as they may - with some help. 

Happy hiking. 

 

SandiaBuddy's picture
SandiaBuddy
Posts: 1063
Joined: Apr 2017

Especially since cancer, I say almost daily, "exercise helps with everything."  It seems like many of us find refuge in hiking.  I hope you have a great trip to Ireland.  Life will end for all of us, what seems important to me is how we live our lives between now and then.

Butt's picture
Butt
Posts: 354
Joined: May 2018

Are you willingto send him you cat scan and potentially travel there? 

feckcancer
Posts: 116
Joined: Jun 2018

i have been thinking about you a lot Ms Mojogirl. Have you thought about having some counselling? You must have so much stuff going round and round in your head so it might be helpful to talk to a professional because the last thing you need at the moment is to make a wrong decision. Good luck for new years day & take care of yourself. 

Butt's picture
Butt
Posts: 354
Joined: May 2018

It is another one who does surgeries fir what you have and Russia has some sort if HIPEC for lungs. They also will need a CT scan. Are you willing to travel to either Germany or Russia for a surgery? Is your US insurance domestic or worldwide? Are you comfirtable beino there fir a few weeks? 

mojogirl67
Posts: 288
Joined: Oct 2018

I have seven nodules..one is 22mm and one is encapsulated with the rest being scattered thru both lungs. No biopsies, no more PET scans, no more chemo, and no more surgeries. The risk of sugery is great on its own but to travel abroad  is a whole other ballgame. I have truly made peace with what is and will come to be. I intend to enjoy the days I have living my life until I no longer can. I respect what anyone chooses to do to fight this disease and try to survive it. It is an individual decision and not an easy one to have to make. I know you have fought hard and searched for answers and treatment. I wish you peace and hope you find some open doors for your own treament....hugs, M

abita's picture
abita
Posts: 790
Joined: Dec 2017

What does it mean that a tumor is encapsulated?

mojogirl67
Posts: 288
Joined: Oct 2018

Encapsulated would have been an improvement, lol...I'm sorry..One of my tumors is "cavitary", not encapsulated. My mistake. I have been reading so much that I guess "encapsulated: stuck in my head. Cavitary is what I should have said. 

Bellesouth
Posts: 23
Joined: Feb 2017

I'm confident you still have many good years ahead. I've always known that I have the same number of lesions/nodules since I was diagnosed in 2015. But I only recently learned how many there are. I have 23 in my right lung, and 14 in my left. In my August scan, the largest one was 30mm or 3cm. That sounds huge, but <<knock on wood>> I'm still not having symptoms. Yes, I have been on intermittent chemo all along, but I was totally off chemo for 2 full years from 2016-2018 with no new lesions. I know everyone is different, and every incidence of cancer is different. And maybe I've just been blessed. The doctors always said that my age and not having any other health conditions are very important factors. But I believe you will be every bit as fortunate as I have been. 

abita's picture
abita
Posts: 790
Joined: Dec 2017

You were off chemo for two years and the lung lesions did not grow? Are you exercising, eating plant based, what is your secret sauce as it were?

Bellesouth
Posts: 23
Joined: Feb 2017

They grew, just very slowly. I had scans every 3 months to monitor and after the two years we hit them with 7 rounds of Avastin & 5FU to knock them back down. I'm all about quality over quantity and finding a balance that I'm okay with. My "secret sauce"? It's actually rather shameful. I never exercise and never have. I refuse. I'm totally sedentary. I have a desk job and in my spare time I enjoy resting, reading, etc. As far as diet, I grew up on a farm and would never consider plant-based. When my grandmother was in late stage colon cancer, one day she was puttering around in her kitchen while eating a Dutch pretzel. She stopped, looked at me and said, "Uh. If I'd known this, I would've eaten what I wanted to all along". So I guess that stuck with me. Plus I see cancer as a liberating thing, with license to do whatever you want, just because you can. Thanks to the pre-meds, I don't get sick on chemo, and the steroids keep me as active as I want to be and give me quite an appetite. So I eat like the southern girl I am- fried, fatty food, red meat, bacon, white bread, sugar, it is ON! The only things I can't eat due to bowel issues are salad (raw vegetables & greens) and whole grains. Pretty convenient! I never really thought about it, but maybe my secret sauce is to be defiant and dare cancer to come & get me. I don't know. I'm just living my life

Trubrit's picture
Trubrit
Posts: 5148
Joined: Jan 2013

I am so happy you posted this, Bellesouth.  What a motivation for all to see how well you are doing. 

Tru

Bellesouth
Posts: 23
Joined: Feb 2017

Thank you, Tru. I'm just trying to be supportive and encouraging to Mojogirl. Well, to everyone of course but in response to Mojogirl's OP

mojogirl67
Posts: 288
Joined: Oct 2018

I am a Southern girl myself and you make me proud to be so. I intend to live and enjoy everything that calls my name (within reason, lol). I have just made a decision not to do the chemo. I have always liked the healthy stuff anyway. My kids say I have always liked rabbit food and "weird" stuff, lol. I just finished the thickest ooiest gooiest grilled cheese ever and my secret to the crisp and the taste was good ole' Dukes mayonaise. I went by a new bakery in town today and had two of their specialty cookies as well. Earlier today I did juice which was something I did before I found out I had the cancer. I have always been a believer in the natural supplements and still do those as well as some acupuncture and Chinese herbs. So, I am finding MY balance in all of it. For me to put a port back in my chest and do chemo again would kill the spirit in me. While it MIGHT nock down the lung nodules, it would without a doubt crush my spirit and soul. It soooo much goes against the grain of what I believe in. I have respect for each of you here and what you have to do to "live" your life. This just happens to be the way I have to live mine that will give me the peace I need of mind, spirit and body. I can't begin to express how grateful I am for all of the encouragement and suggestions coming my way. You guys on this board ROCK!! I haven't "given up". I am just choosing to fight this on my own terms which I know is not the accepted "norm" for most. I continue to live a blessed and beautiful life every day I take a breath even with these damn nodules in my lungs..lol  It was beautiful in my neck of the woods today and I actually got to take a walk in them today. Truly hoping each of you found something beautiful in your own neck of the woods....Huge hug to all of you rock stars!!

feckcancer
Posts: 116
Joined: Jun 2018

when you have cancer the new rules are there are no rules. you can do whatever you want & feck anyone that tells you different. restoftheworld rules don't count anymore.

try adding Tumeric (500-1000 milligrams a day) , fishoil , vit B supplements, maca & medical mj, hemp seed oil,limited or no red meat , pineapple, kombucha,  probiotics, massages,  counselling to the acupunture & chinese herbs & exercise (check all with your doctor first). all are either 'anti cancer', anti inflammatory (very important with cancer) and contribute to good gut health plus 90% of your happy hormone are made in your gut not your brain so they will help with mental health .

i am sure there are more things that should be added to that list and i hope others will contribute to it 

abita's picture
abita
Posts: 790
Joined: Dec 2017

massage helps?

feckcancer
Posts: 116
Joined: Jun 2018

sorry, i should of been clearer ~ my acupuncturist recomends massage after acupunture , she says it enhances the good acupunture does. also our local cancer society believes in the power of massage so much it offers subsidised massages for cancer patients by a qualified massage therapist who specialises in massage for cancer patients. i guess it helps keep stress levels down which is a good thing as there is a theory stress contributes to cancer. not sure that is true but i believe stress can contribute in many ways, one of which is stress can make you behave in ways that aren't good for you. eg: if stressed you may eat more bad foods, drink more alcohol, smoke more cigs etc & generally indulge in risky behaviours that are known to contribute to getting cancers if that makes sense. as always check with your doctor & tell your massage therapist you have/had cancer as they should know the best way massage can help you.

zx10guy
Posts: 260
Joined: Dec 2013

It's been shown in general stress is not good for overall/general health.  I've seen some studies where high levels of stress has had an adverse affect on one's immune system.  And it's a known where one's immune system is key in keeping cancer/cell mutations in check.  Hence all the effort/research in immunotherapy.

feckcancer
Posts: 116
Joined: Jun 2018

oh that makes sense especially when it comes to cancers that can be caused by the HPV virus. it seems like a lot of people with gut type cancers have also had/have a history of depression/mental health issues and or high levels of stress and i always thought there was a link but didn't know if the mental health issues caused the cancer or did the cancer caused the mental health issues then went to a maca & medical mj seminar a few months ago and learnt about the 90% of happy hormones being made in your gut so if this is correct if you have depression it could be caused by bad gut health which left untreated could then go to cancer maybe??? ~ learning all the time. Thank you for your post

Bellesouth
Posts: 23
Joined: Feb 2017

Ooooh my sweet southern sister you are speaking my language with that grilled cheese and Duke's mayo!! I would've made myself one then & there had I not been on my way to gorge myself with shrimp, lobster, crab legs (all literally dripping butter of course) when I saw this. I def see a grilled cheese in my future for today.

I totally understand and respect your chemo ban. I believe in my heart that you will do fabulously because we southern girls are strong, sturdy and stubborn. And when we set our minds on something, I pity the fool that tries to derail us! I'm telling you.... I'm nothing special, just hard-headed and determined. And if I can make it 5 years with 23 mets in one lung and 14 in the other, and still no symptoms, you can do even better! I fully believe it's the clean mountain air we're breathing. 

When you meet with that doctor, if he says you don't qualify for surgery, ablation, or other procedures....nod, smile, shake his hand and thank him for all he has done. Then walk away and get busy living! You will be totally free not having appointments & tests & scans & blah blah blah. You don't have to focus on cancer, and it won't be dictating your life. Is it weird or awful for me to be happy for you? And more than a little jelly @ your trip to Ireland lol. 

Like you, one of my mottos has always been hope for the best but prepare for the worst. At least then you won't be disappointed. One of my newer fave mottos..... it could always be worse. At least I'm not PREGNANT! 

abita's picture
abita
Posts: 790
Joined: Dec 2017

People have always told me I am strong when it comes to crisis and especially how I am handling my diagnosis. I never really understand it, but I think your post reminded me, I am a southern girl. I may have lived MOST of my adult life in Manhattan, but my formative years were in a town that at times had less than 1,000 people. As a child, you just learn to get things done.

abita's picture
abita
Posts: 790
Joined: Dec 2017

Interesting. I was super stressed in the year and a half leading up to about the time we guess my cancer started. I was pretty far along when diagnosed, so my oncologist was only guestimating. 

feckcancer
Posts: 116
Joined: Jun 2018

same. super stressed in a toxic marriage where i could do no right, + depression + rotten teeth + 1-2 packets cigs a day for years . when it all ended 3 months later i found out i had anal cancer (stage 3 + gone to my lymph nodes + can be caused by HPV virus) which is included in gut type cancers and i wonder if the depression i had for all that time was actually cancer. ?????

i cried when i found out about that.

anyway cancer gone, teeth fixed, depression gone ~ goes without saying toxic husband, cigs, and unhealthy lifestyle gone... made sense to me to remove the things i have been told contributes to cancer in the hope it doesn't come back and replace with things i have been told keeps cancer, stress etc away. giving up the cigs was the hardest but my fear of cancer coming back was stronger than my cravings. fix what you can & knowledge is power. 

ps: i go to an osteopath too and totally believe in doing chemo, radiation & what your doctor tells you but also believe in helping myself too. 

phuckcancer
Posts: 63
Joined: Apr 2016

sending lots of love and strength!

Capox Dude's picture
Capox Dude
Posts: 77
Joined: May 2019

https://www.youtube.com/watch?v=hUFL2GT1-2g

mojogirl67
Posts: 288
Joined: Oct 2018

You sure gave me a chuckle...It seems it gets worse the closer you get to Charleston and Savannah..lol. I don't identify with all of their phrases but some of them I can't deny, lol. Have a wonderful day my friend and "bless your heart"!!Wink

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