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5 Years ++ Stage IV Survivors

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

Last night when I got ready for bed, I noticed the upper part of my left foot and toes seemed numb or asleep. I have never felt this or noticed it until last night. I have had surgery on my right foot and toes and deal with slight numbness in the right foot. The left foot was a different story. I guess good ole' neuropathy from chemo has shown up in the left foot.  I am wondering how much worse things will get with the mop-up chemo I am scheduled to do. It seems the word "cancer" entered my life 3 years ago with my husband's diagnosis and never left. It continues to take my time, my thoughts  and at times, hope for my future. I am going to do the mop-up chemo starting Tuesday and I am trying to come to terms with all of the "stuff" floating around in my mind. I am truly wondering if I will ever be able to get off of this ride. Will my life from here out be a cycle of getting body parts cut off or out followed by chemo every few months to a year until there is nothing left to do?  It all seems like nothing but a gamble even right down to the treatment for this nasty disease. I hate it! I hate what it has taken from me and I hate the fear it has put into my thoughts. I don't think I fear the thought of death as much as I feel anger and the fear of being trapped in a vicious cycle of tests, scans and treatmenta that seem to never end. What makes it worse is that there are no guarantees that all of the crap you go thru will do any good. In fact, treatment can cause additional issues and make things worse. I love life but it seems I can make no plans without figuring how this damn "cancer" will factor in. I got my diagnosis last year and I wonder what will happen once I finish the "mop-up" chemo my onc wants me to do.  I would really appreciate hearing from Stage IV survivors who went thru treatment and have beat the 5 year mark without recurrance. I realize that there are many of you fighting hard. I guess I am just feeling the full effects of all of this pretty hard today and I know it will pass and I will keep putting one foot in front of the other and do what I have to do.  I still would love to read some stories of hope if you one to share. Hugs, M

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

Get that foot checked out. It is unusual for neuropathy to just appear out of the blue, when you are not in active chemo.  I know there are late-term side effects, but I have not heard of neuropathy being one of them. Worth a talk to your Onc when you see him. 

I hear your 'voice' and you sound tired. You have been through so much, and it is not suprising that you want to question if it is all worth it. You are still recovering, physically and emotionally from your huge surgery, and now you are faced with chemo. That is enough to bring you down and questioning. 

I know you can't be in your speical mountain place all of the time, so you need to bring a bit of that mountain peace to your life in the valley. Do you by any chance listen to healing music? It is not everbodies cup of tea, but it is something that, along with other things, has helped me in my journey.  Here is a link to just one of my most healing pieces of music, by Steven Halpern  https://www.youtube.com/watch?v=ZaNJeGUZynw&list=PL3F7ClbnI0hyeXRr0LAMAdbDn13iu76nU&index=3&t=0s  

You ask for a story of hope, and I don't know if I have one, because, compared to you and many, many others, my Cancer journey has been relitivly easy.  My life on the other hand, was not. So much childhood trauma which left me with physical and emotional damage. While I was a pretty 'normal' person on the outside, the inside was a mess - again, both physical & emotional. I lost two babies and had neumerous surgeries to repair damage, which worked, and now I have two lovely sons. I never sought emotional help, but found it in a book when I turned 40. I was just getting to a great place in my head when I was diagnosed. You would think that Cancer would ruin all the hard work I had put into being 'well' in my mind, but it did the opposite; it literally healed me. It healed me from the trauma of my young life. I guess the moral to the story is, there can always be something positive in a negative situation.

Now I've rambled on about that, I do want to let you know that you are allowed your low moments; your questions of 'is it all worth it?' as long as you pull yourself out of them, and, like you say, put one foot in front of the other and move forward. 

You are a treasure. We all love you, and are behind you as much as we can on a forum. And I have no doubt you are surrounded by people who love you in the real world. We are all here to help you, to carry you if need be. 

Tru

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

Yes, I am having some huge "moments". I will always reach for love and light. I grew up in a very dysfunctional home and experienced trauma and great loss of my immediate family in my young adult years. I kept my head up and life was always worth it and I know it still is. You are a treasure yourself. You are always here to just listen and gently encourage. I guess we only "see" what others gives us a peek into on this board. I guess losing my husband and having a front row seat to it all jaded me without a doubt. The hurt and pain of watching him suffer terribly after fighting so hard nearly tore me apart and wore my spirit down. I was just feeling like life might be ok ,and then I get hit with the same exact diagnosis. I I know life isn't fair and I am usually in a place of gratitude. I get so angry when I think about how dangerous these drugs are. There is no guarantee they will work or what side effects each of us will get. "Let's use a little more weedkiller and hope it doesn't damage the flowers". Yes, I am spitting this out and yet, the fear and uncertainty I carry will have me back in the chair on Tuesday like so many others. I have always looked and found good in the worst of situations, including this one. Thank you for hearing and responding to my whining and my fears. I so appreciate you and everyone on this site! Hugs, M

myAZmountain
Posts: 258
Joined: Apr 2018

As a Stage  4 with mets to more than one area i would love to hear from them as well! Mojo here is a Youtube from a couple of survivors but it is over an hour--if you have time you may find it very interesting. Will you be having a reduced dose of chemo for mop up?

myAZmountain
Posts: 258
Joined: Apr 2018

Here is clip https://youtu.be/qReudtklq9Y

 

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

Thank you for chiming in. I guess all of this has taken more of a toll on me than my stubborn self wants to admit. I HATE IT!!!!! When I start chemo again on Tuesday, it will just be the Folfox this time. The Avastin was for the tumor shrinkage. The Folfox is nasty enough on its own. I have so many things to be thankful for and most of the time I am in a place of gratitude. Cancer threw a wrench into so many things for me. I met the love of my life and lost him to this crap and now, as if to spit in my face, fate is giving me a ride on the merry-go-round with it. AZ, I won't get on a soap box, but with the trillions of dollars raised for "studies", you would think there would be a brighter future to stomp out some of the misery. . Enough said. I will be in the chair on Tuesday and have by no means given in. I just woke up in a whiny mood I guess, lol. Hope you have a blessed weekend!!..hugs, M

beaumontdave's picture
beaumontdave
Posts: 993
Joined: Aug 2013

You know my story, we share similar painful paths, but my spaced out recurrances don't comfort anyone who wants this stuff whipped now. I didn't do mop-up chemo and that just adds to the debate since I'm closing in on 5 years passed resection. The only comfort I have for you is that there is another side to all the fear and misery you're currently wading through. 11+ years later, my life is irrevocably different, but it was worth getting to. I have joy and meaning again, probably more a result of luck and a bouyant attitude than anything I engineered. Anyone who reads your stuff knows you have that bouyancy in there, wrestling with the fear and doubt. Hang tough, you'll be on the other side of this current morass, and marking time while looking forward. I believe it...................................................................Dave

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

Thanks Dave. Sometimes you just need somebody to say you'll get thru it. I suppose I am adjusting to my "new normal" and not doing so great today. Your words are a bright spot for sure. I hate that we share the common thread of loss that we do, but knowing you are on the other side and have found "good" life beyond the loss and cancer brings hope and a much needed "nudge" to stay in the game. I don't think I will do all of the 7 treatments left in my cycle of twelve but I will show up on Tuesday and see how things go. If you don't mind me asking, how many recurrances did you have and how were they treated? Thank you more than you know for taking the time to give me those "nudges" when I need them most. Wishing good things your way! Hugs, M

beaumontdave's picture
beaumontdave
Posts: 993
Joined: Aug 2013

I had two, essentially spaced three years apart. Both liver resections, first three scoops, then one close to one of the earlier spots, up in quadrant 7 of my liver. I don't know where that puts it, but it must have been hard to get to. Nice to see a pic of your man.......................Dave

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

I can't even wrap my head around another resection coming down the road at this stage, lol. My pain has just gotten to where I can handle it and do what I need. I just wonder if there will ever be a day when I don't "feel" pain, a twinge, or something where my liver is. I can simply walk and feel the landing of my footsteps in my right side, lol. My incision healed well on the outside but it feels like someone is inside my stomach at times cinching everything tight. I know the deep ab muscles were cut and will take time to heal but my stomach feels so numb in places. I can finally sleep without a dozen pillows for support, lol. I'll be honest. I have moments where I can cry at the drop of a hat from frustration because all I can do at this point is continue with the plan in hand and hope we kill it all. Not having my best friend to comfort, hold, and push me thru sucks as well but I guess anything can be worse so I try to stay positive and keep pushing thru..he would want that. Thanks about the pic. I'm just at a point where I can look at a few but not often. My heart is just still so tender.  That pic was taken the day we got home from his 3rd Folfox treatment. He was optimistic and ready to fight. I had planted tulips by the creek that were coming into bloom with Spring and he wanted us to take a picture in front of them. His pastel striped shirt matched the different colors in the tulips...it's a sweet memory. If you don't mind sharing, what is the worst long-term side effect you have from all of it? Hope it was dry in your neck of the woods with sunshine somewhere! It poured rained here all day, lol..Hugs, M

 

beaumontdave's picture
beaumontdave
Posts: 993
Joined: Aug 2013

Rain may be a pain in a lot of places, but here in South Cali, every drop is a blessing, and we've had a great winter full of storms. My fruit trees and plants are bursting with color and life. Aside from the aching hole in my heart, I couldn't say one thing stands out as the worst effect. I started this as a busy 49yo contractor who loved his life, and had enough time and money to chase the interesting, fun stuff of a family life. Now I'm going on 61, and energy and money are in shorter supply. The bad ankles/feet were a lesser factor then as well. Now I have to chose where I can spend my energy, knowing there's a clock on the time I can move without creating a pain beyond the reach of the pills I have. Some of this certainly would have shown up on it's own by now, but I do mourn the loss of drive, and the ability to do as I once did. You mention the effects of cancer pain and I realize I've never felt them. Besides a little blood in my stool, my body has never expressed the effect of having cancer. All the effects have been from the treatments for it, and fixes for the surgeries. Tomorrow rain's coming, so I'll finish this and go work in the yard, as today is beautiful, and sometimes that is all it takes to restore my soul, such as it is, lol......................................................................................Dave

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

Hope you finished the work in your yard and got the needed rain today. Reading your comment on the "hole in your heart" choked me up. Got one myself but I am trying everyday to fill it up with the good memories we made and I know you do as well. You are an inspiration here with encouragement and sharing your own experiences and thoughts.  I know she is proud and smiling somewhere because of it. My chemo was put off for one more week so I drove back to the mountains until next Tuesday. You said rain was coming for you today. I drove home to the mountains today. It has been in the high 60's and brilliant sunshine today. I soaked it up, lol. When I asked about long term effects, I meant from treatment, not from the cancer itself. I was doing some hard hiking in these mountains right up until the day of the colonoscopy that found the cancer. Like you, I had blood in my stool, but chalked it up to hemmorhods. I had pain in my right flank from the liver, but at the time, I thought I had just pulled something. I am just praying that the neuropathy doesn't set in with the remaining treatments I have. I won't claim anything until it comes my way, lol. One question...Did you or do you have a lot of burning and numbness with your incision scar from the resection? I know it's early for me, but I have so mush numbness and random burning sensations even when I haven't done anything. I pray that will get better with time . Hoping your day has been full of good things!...M

beaumontdave's picture
beaumontdave
Posts: 993
Joined: Aug 2013

When you mentioned pain in your flank where the liver is, I suddenly recalled that I had a dull pain there as well, but it turned out to be a swollen appendix, which had been going on a month or two before diagnosis. The seatbelt hurt right there and I was always shoving a towel or something soft on that side. After diagnosis I forgot about the ache until the doctor came in post-surgery and said they took my sigmoid section, my appendix, and fixed a bellybutton hernia. I guess I was fortunate the appendix wasn't cancerous, and since then have heard a number of CRC people had their's taken at the same time, as well. I wasn't real direct about the long-term effect from treatment, drive and energy being the first loss I think of, but I have some hand and foot neuropathy, mostly tingly, clumsy hands that don't sense light touch very well. I compensate by grabbing things harder then necessary, which creates it's own issues. I didn't mention neuropathy before because the dystrophy I have, that mainly effects my feet, also gives me numb hands, and I can't really say how much, if any came from the chemo, and stayed with me. The resection scars and the hernia repair were big scars, 14 inches up the middle, a foot to the right, marking two sides of the liver[I measured]. The hernia fix lengthened the original lines so they could anchor mesh to functioning muscle, They had five drains in me, and I went home with three, for a week or so. I felt numbing, tingling, itching while they healed and for some time after, but they feel normal now, They look like intersecting railroad tracks , from all the stitches, lol. The day's been fine, the rains have me fixing things in the house, whilst the kid handles the work load. Hope the day is kind to you, as well.................................................Dave

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

  Was treated at the same time as I was with the same chemo. Virginnia (foxy) was stage 4 with mets to the liver. She had colon surgery and a wedge resection of her liver. She had 5fu and levamisole for chemo , around 48 sessions from memory and between us we have accumulated around 45 years cancer free. We both have significant long term effects from the chemo, Ron.

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

Thank you for sharing with me. I am going to try the mopup chemo and see where things go from there. Hope you are living your life to the fullest!...hugs, M

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

Happier days that live on in memory. 

HUGS!

Tru

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

That pic was taken on the day of his 3rd Folfox treament. Even tho' you don't see them in my cropped profile pic here, we had tulips coming up in the yard and the colors matched his pastel shirt, lol...so, he wanted a pic. He was so hopeful and full of fight in that moment. I try to reach for those good memories when I need a little "you got this" for myself. Happy Tuesday True!! Hugs, M

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

I can relate so much to the bad days. So many days when you wonder why and how you'e going to get through this. And is it worth it? It's a constant cloud hanging over us all. There's been a stomach bug going around here. Both my husband and my daughter got it. I probably had it, too. But for me when I throw up after not doing it for months. And have crazy loud gas noises which I also haven't had in months, right away I'm terrified I'm going back to how I was. Every morning when I wake up I give myself a quick assessment. Still good? Yup! But I live terrified that one of these mornings I'll wake up and be back where I was. And every time I take a step back I think that this time I can't do it again. But I do.

A friend of mine sent me two cuff bracelets. Both have inscriptions. One says 'KEEP F*****G GOING' on the inside and the other one says 'nevertheless, she persisted'. I think this applies to all of us. No matter what it is in life that has hurt us mentally of physically. 

Hugs,

Jan

impactzone's picture
impactzone
Posts: 531
Joined: Aug 2006

I was dx stage 4 12+ years ago. Had all the usual stuff and more.... 4 thoracic surgeries, liver surgery, colon surgery, chemo ( folfiri), etc. Started at 48 years old and have been NED for the last 6 years. All was done at Stanford but there is no magic bullett for everyone. If anything, I credit being aggressive on all treeatments, prayer, change in diet to much healthier, an aspirin a day, trying to eliminate as much stress in my job and life, keep skiing and surfing, have a great support person (wife) to help. 

All my best

Chip

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

Thank you! Wow! I needed to see your message. 12+ years...awesome!! I am fighting hard and taking each day as it comes. I don't intend to let cancer win again in my life. I so appreciate your story and wish you the best in your life Chip!  Hugs, M

impactzone's picture
impactzone
Posts: 531
Joined: Aug 2006

Cancer will never win... at its worst its a tie... Horrible thought but at some point I used it to try to convince myself that it will never beat me. 

All my best

myAZmountain
Posts: 258
Joined: Apr 2018

Your story gives this Stage 4 such hope! Thank you for posting!  Did you only have 10 chemo sessions in total?

impactzone's picture
impactzone
Posts: 531
Joined: Aug 2006

I had 10 months total. 3 months every two weeks, then surgery followed by 7 months of follow up.

Chip

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

 Your story gives me hope!   I know we are all in this together and yet each person’s experience will be different.  So much hope and cause for celebration in your note. I needed to hear it. Again, thank you!! 

Elaine

beaumontdave's picture
beaumontdave
Posts: 993
Joined: Aug 2013

Nice to have you weigh in, Chip, I've got most of those good habits going, but a couple still need work, lol.......................................Dave

impactzone's picture
impactzone
Posts: 531
Joined: Aug 2006

10 months of chemo...I also was inspired by others when I was first dx.There are more out there then you read about. I know many others who are doing well but have left the board. It is unfortunately a different feeling for some  going through this for years. Often they need a break and want life to get back to "normal". They still care but sometimes it is hard going back...You are all heros and warriors... alll my best and I am happy to answer any questions.

Chip

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