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Stage 4 Colon with Mets to liver—worse 50th bday gift ever!

Ebaran71's picture
Ebaran71
Posts: 2
Joined: Apr 2021

 Hey y'all.  New here and truthfully, scared shitless (no pun intended lol).

Went to the Kaiser Permanente Urgent Care a week after I turned 50 with constipation and bloating that just felt "different".  Three hours and one CT scan later the poor ER doc came in and with no preamble says "they found a large mass in your colon and it has metastisized to your liver".  Now, I'm a just rip the bandaid off kinda gal but still . . .

Was scheduled for a colonscopy 10 days later but while doing the prep--nothing was coming out.  Back to Urgent Care and second CT showed the sigmoid mass was now also an obstruction AND there's an abscess on my right ovary.  Admitted to hospital and surgery performed the next day.  Six days later I was discharged with a colostomy bag and an oncology appointment.

I started FOLFOX in March and have now finished Cycle 2 of 12.  Side effects are numerous but none life threatenin.  I'm really struggling though. forums and discussuion boards are not my cup of tea and thinking they might be helpful overall.  At least they may be a place to hear from folks who have been where I am now and who can relate in way no one else can. 

About me:  Ohio native, but living in suburban Atlanta for 25 years (half my life!).  Been married 21 (BLACKJACK!) years to a great guy (he's a cancer kid too--beat Stage 2 testicular cancer 17 years ago).  15 year old daughter who is a freshman at a very challenging high school.  My goal is to at the very very least live long enough see her graduate in 2024.  Doctors say I have a good chance but also say the average survival rate is 2.5 years.  Now I'm no math genius but 2021 + 2.5 years doesn't get me to 2024 lol.  Currently working but SERIOUSLY considering early retirement next year with 26 years in. I am extremely fortunate to have a public service job that will provide a lifetime pension for me and then for my beneficiary as well as health insurance.  There are LOTS of ways this diagnosis could be much harder but today--I don't care.  This is very hard and I find I am feeling easily overwhelmed and can't figure out a way through those nerves and anxiety.  I love routine, rules, and rituals and every day feels so very different.  So pretty much the opposite of how I like roll.  I love true crime and if you are an SNL fan, the Murder Shows skit last month is me!  LOVE travel--especially to Europe but you know how those travel plans have been going lately.  (Thanks pandemic!).  Reading and spending time eating and drinking with friends round out my favorite things to do.  (Again thanks pandemic for ruining that for the last 13 months too).  My life has been a really great one--no real regrets, no mostly unchecked bucket list, terrific support from family and friends always--And yet THIS SUCKS.

Not here for pity or answers maybe just here to fuss and whine today???  And to introduce myself as a new to this and hating it person.

Thank you for making it through my diatribe.  I'm glad (?) to be here.

EBB

abita's picture
abita
Posts: 978
Joined: Dec 2017

I was diagnosed in Oct 2017 at stage 4 with spread to liver. Had all tumors removed, and sadly had recurrence immediately. But, still here, still going strong, still believe my miracle is coming. I have never been given any timeline and I don't ask for one. I do have intense fatigue from the chemo, but hey, I still enjoy life, and that is what is important to me. 

Trubrit's picture
Trubrit
Posts: 5389
Joined: Jan 2013

Don't worry about getting pitied, we're all in the same boat, so no pity here - JUST KIDDING!  It is not pity so much as it is empathy. We are empathetic (some may say I'm pathetic), becasue we are rowing the same boat as you. Empathy is much better than pity. 

I had almost the same expereince with prep, except my GP told me to use 2 enemas. Well, the 'what goes up, must come down' was not true that day, and I ended up in the emergency room. I too, had a large mass, blocking the exit.  Surgery took care of that, followed up by FOLFOX, 5FU & Radiation.

Do not worry about the numbers.  They are just estimates, which change person to person.  

Take me for example - and Abita and many others on the forum.  I am Stage IV, diagnosed in December 2012. recurrance in liver 2014, and since then, NED - No Evidence of Disease. 

Each one of us could tell you how we came to a level of acceptance, and calm - certain amount of calm, but at the end of the day, you have to find your own way.  Still, you can read about all the different ways we've done it, and maybe find your inspiration here. 

Guided imagery was a life saver for me, during chemo. I moved from there to meditation, and as my body healed, yoga and meditation.   I quite shocked myself, becasue I never thought in a thousand years, I would be the meditating kind of person. too energetic. But alas, it worked miracles in my life, and I feel it is still working a miracle. Part of the reason I am doing as well as I am. 

Well, there is my personal experience.  I know you will find yours.  You will find your new normal, because the old normal probably won't be with you for a long time, if ever. 

Plan your daughter's graduation and plan on being there.  Again, don't look at the stats, so many of us have proved them wrong, and you will be one of the as well. 

Tru

DanNH's picture
DanNH
Posts: 65
Joined: Feb 2021

You are among friends here. My wife is 61 and she also has colon cancer with liver and lung mets. That was in January/February. We lived on adrenaline and on the edge of anguish for a good six weeks. We started chemo in March as well, after a couple of scheduling mishaps and a kinked port line that had to be fixed surgically. Combined It delayed chemo by about two weeks. I am writing from the infusion center and round 3 is under way. My wife has had cold sensitivity, metallic taste, a little neuropathy, hair beginning to thin, trouble swallowing pills, a little thrush, and a little skin just beginning to peel on her thumb.

 

She gets nausea meds with her infusion and has a prescriptoon for a dissolvable nausea med. We learned where the nausea acupressure points are and they bring instant relief for a while. The anxiety nausea points work well too. She wears gloves in the fridge and I found silicon door knob covers on Amazon. They don't conduct heat well and help with that unthought door knob grab. Cannabis is legal here and we were introduced to infused seltzer water. It helps her to relax. It helps her sleep. She also uses Unisom to hep her sleep as well. Prior to this neither of us had ever used cannabis or a sleep aid. Its different now. All options on the table.  She makes her own salve for the skin irritation. She has a bottle of baking soda and salt water in the bathroom and swishes whenever she sees it. She has a swish mouthwash for thrush. It has a numbing agent that makes her thick tounged like a dentist visit. It takes care of the thrush.  The chemo side effects are a little rough but she is getting through it. 

We are doing some holistic treatments including low carb diet, Vitamin C IV, and hyperbaric O2. She sees another doc for energy healing. We are throwing the kitchen sink at this!

It was scary to be diagnosed and is every day since  but with time we don't think about it constantly. We have grown stronger in our faith and pray a lot! The support, love, and concern from friends, family, and even acquaintances is mind blowing! You will find support right here on this forum.  You will also find hope from stage 4 survivors, real people who will drop in on your posts. Their presence is filled with hope that chases away the despair. We are all in this together. Try the chat room. There is more activity after 9pm and a room full of friends that you haven't met yet. You will learn a lot here and you will learn that you are not going through this alone. 

Dan

sgold88
Posts: 39
Joined: Oct 2020

Sorry to meet you in this forum but rest assured, you are in a great place for support given your situation. No one here will rainbow anything for you but also won't make it worse than it has to be. Cancer is unique to each patient. That's why it's so hard to cure. My wife was 39 yrs old at diagnosis in August 2019. Mass in colon, spread to 3 lymphnodes and then they discovered two tiny mets on liver about 2 months later. 12 rounds of FOLFOX after surgeries - her last round was in May 2020. Stats showed 15% survival rate on google. What those stats don't show is the effect of age, eating habits, timing of when they catch the mets, excercise regimen, previous underlying illnesses, etc. The truth is your chance at 5 yr + survival can be well over 50, 60 and even 70%. That average includes very elderly people who may have died from something unrelated or whose bodies cannot fight back the same way a 50 yr old can. This may sound strange to hear, and I'm no oncologist, but without knowing anything else about your profile, it seems you are in a really good category of a crummy situation. My wife, thank Gd, has had clear scans since and we take it day to day. Stage 4 cancer doesn't have the same outcome as even 5 years ago. Doctors are really good at this stuff. Good luck. 

SnapDragon2's picture
SnapDragon2
Posts: 472
Joined: Nov 2019

In ATL there's a great ND/herbalist, Oscar Sierra.  Also maybe get a consult with an intergrative oncologist as support to traditional chemo.

NewHere's picture
NewHere
Posts: 1292
Joined: Feb 2015

We all do it now and again.  Based on what you wrote, however, you do not sound like you are whining.  You sound like you have things together really well.  

You can click on my profile for more details, but I am Stage IV - mets throughout lymph nodes, spine and lungs (had part of lung removed in 2016, have at least 6 dozen tumors in my lungs).  My survival rate at diagnosis was that 10% make it 5 years.  I am 6 years 2 months past my first surgery in 2015. 

I started exercising when it came back for the third time in three years in 2017.  Never ran before then, and no way near being an athlete, but have completed 1/2 marathons and other races, including triathlons, while on chemo.  Attitude is not going to be a cure in all of this, but I am a believer it helps.  My doctors are pretty sure at this point that the exercise has helped my body compensate.  I had a bit of down time  this month (April) due to COVID Vaccine and Chemo timing,  but still have run 10 miles and biked 35 miles so far in April.  

There are going to be down points, but try to get past them as quickly as you can.  Come here if you need an ear or support.  It is also okay to be a little selfish and do things you like.  The panademic does not help of course, but I found going out for a lunch and a cup of coffee helped me feel normal.  Binge some comedies.  Based on what you described in terms of a pension and health benefits,  an early retirement sounds like something to seriously consider. I know I would be be looking at doing that. 

Anyway, sorry you are here, but welcome.  

Ebaran71's picture
Ebaran71
Posts: 2
Joined: Apr 2021

Back again. Thank you all for your kind responses.  I never thought I'd turn to internet strangers but I'm glad I signed up for CSN this morning.  I know that getting up and moving is the best thing for me but today just isn't that day tho I did go out to the kitchen to clean up breakfast dishes (clutter makes me crazy!  I'm not able to let that go yet lol) and make myself some peanut butter toast for lunch.  Your stories and experiences are very helpful.  And y'all are right.  I am capable of finding my new normal but hearing others ways does give me inspiration and makes this less lonely.  

Thanks again!  Cheers!

Steelkiwi686's picture
Steelkiwi686
Posts: 66
Joined: May 2019

I'm glad you found this site! I'm another stage IV, diagnosed June 2018 at age 54. This group helped me more than I can describe when going through active treatment and continues to mean so much. I'm sure you will find the same. I also had surgery, then Folfax, etc and in August 2019 I was declared NED. Last scans still clear so I'm keeping it moving at approaching 3 yrs from diagnosis. Yes the pandemic stinks yet here I am stronger than I was when it started. 

You will see that even with Stage IV cancer, one can still have a life and some are treated as if it is a chronic illness. It is helpful to read past messages where so many share their stories. It is an education like no other and was like a lifeline to me. 

The biggest lesson I learned here is that there is Life with cancer and where there is Life there is Hope.

You are not alone. 

 

 

 

 

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