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Tick...Tock..Tick...Tock

mojogirl67's picture
mojogirl67
Posts: 263
Joined: Oct 2018

I try to be as real with this journey as I can be. I have never struggled so much in my life. I guess doing the chemo to shrink the tumors for surgery initially was something I accepted due to my liver involvement and the size of the tumors. The chemo did not actually affect the liver tumors much at all. The path report stated "poor response" to the treatment. However, the colon tumor responded and all lymph nodes removed during resection were negative for cancer. Due to the fact that my husband fought this same battle before me, I have read and read study afte study looking for rays of hope and something to base decisions on. The rate of recurrence is high for Stage IV with liver involvement and I realize that. From all that I have gathered, the addition of the mop-up chemo provides a very small increment of benefit overall. To me, the damage it can potentially due and the "unknown' results just don't seem worth the misery. If I am going to have a recurrence and surgery is an option, it seems a better route for me. If it is not an option, the misery I suffer with the treatments is not worth doing to extend time for me when a lot of it will be spent feeling sick, dealing with side effects and running from doctor to doctor. I know this is an idividual decision and I know I am not the only one who has wrestled this bear. The "unpredictablily" of treatment after years of research still blows my mind and makes me angry. It all seems like such a crap shoot with precious lives held in the crossfire. The thought of feeling like "myself" and living my life fully and feeling well if only for a short while honestly outweighs what I have felt the past few days. Just a few short days ago, I was feeling so much better from surgery and my appetitie was picking up. Sunshine was wonderful and I was singing as I drove. Walking into that infusion center was a hard walk. I saw so many things in the eyes of the patients sitting down the line.  After disconnect Thursday, I tanked like never before and wanted to crawl into bed and never leave. I had to ask myself what all of this was doing to my physical and emotional being since this time was so much worse and if it was worth continuing. Am I just pouring more useless drugs into my system as a 10% advantage point?? That's what it feels like to me at this point. Surgery is something I would consider again because I know my body can recover from that. The chemo is a whole differnt ballgame. Zofran was my breakfast first thing this morning and I am hoping it holds the yuck at bay so I can enjoy lunch with my daughter today. I never had to take the Zofran with the first 5 rounds so it makes me wonder what is happening to my "insides" with all of this now. I truly wish peace and comfort to anyone who finds themselves on this road. It is not a walk in the park for sure and we all have to do what is right for our lives. Please bear with me while I "talk" this out and try to figure my own path out. I never want to bring another member down in their own journey regardless what I am feeling. Truly wishing good things for everyone here...Hugs, M

SandiaBuddy's picture
SandiaBuddy
Posts: 918
Joined: Apr 2017

It kind of sounds like you are reaching a decision point, even though you do not quite say so.  I think people who stay on this board tend to have had chemo and tend to support it.  But this is your individual decision.  Only you can decide if the compromises of chemo are worth it.  As for me, my situation was different because I was a 3b, but with the return of heart problems from the chemo, I truly regret doing it; and if I had it to do over, I would live without chemo.  I am with you, surgery is bearable, but for some of us, chemo  is not worth it.

myAZmountain
Posts: 283
Joined: Apr 2018

It is difficult deciding what is best in regard to chemo--- quality of life is much more important to me, I opted to stop at 9 rounds and not to do any maintenance Avastin.   it has been wonderful being an active participant in life again--hiking with the dog, running around town doing errands, gardening....feeling "normal" again. Last scan in March was good, nothing new nothing grew--I get rescanned next month . Is there any way you can just take a breather for a few months--at least until you have a follow up scan? I sent you an email thru this site a while back that had a link you may find interesting..strength and love to you.

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

I wish I had more to offer...I SO understand your thoughts and feeling. I honor you for expressing theM. 

I hope the yuck lifts. 

Blessings to you,

Elaine

beaumontdave's picture
beaumontdave
Posts: 1006
Joined: Aug 2013

You have me wondering, one mass in the sigmoid and a couple nodes involved, then the 12 of Folfox. Two years later something's growing in the liver, the onc. almost chuckles when he tells me it must have been there from the point of initial surgery, and the chemo just didn't get it, and chemo is never an option after that. If it failed in the liver was it effective anywhere else? The nodes, the bloodstream? Does chemo work in some places and not others, because the cancer structure is slightly different? Not to cloud your decision Mojo, but you make me wonder if the Folfox did anything. Clearly I didn't have all the tests, genetic and other that would indicate what was useful. Guess I'll read up on it. Peace and confidence to you..............................................Dave

mojogirl67's picture
mojogirl67
Posts: 263
Joined: Oct 2018

Hey Dave..The colon mass was discovered durinf my colonoscop. A CT scan a week later shoes two large liver lesions on the right lobe..They wanted to throw chemo on them to shrink things before surger. Colon tumor responds but not much response from the liver tumors. Clean margins and negative 19 negative nodes,?I’m taking my chances and telling my doc tomorrow no more chemo. This first mop up round was worse than all five of the first ones.The initial fatigue on disconnect was immediate and worse than I ever had. Then, the emotional hit was incredible. I’m a pretty strong gal but I wept like a baby and then had to deal with the eye pain caused by the chemo, lol. I’m going for my doc visit tomorrow and telling her to schedule to get this damn port out of my chest. I’ll keep up with scans and bloodwork, may do surgery if it comes back but I will NEVER put another drop of chemo in my body. Yesterday was the worst day I have ever had. I thought I had a bowel blockage even with drinking tons of water. (my chemo nurse tells me I drink so much that my urine looks like water, lol) Finally with my daughter’s help (and an enema), relief came along with severe periods of throwing up. I’ve lost 5lbs this week and other than after surgery, that has never happene. You can’t tell me pouring that crap in my system is helping me.I’m going to live my life and work to heal what’s already taken place in my body. If I live 20 years, great! If not, I plan to live what I’m given on my terms and not sick as a dog or feeling like something or someone has hijacked my mind, body, and spirit. Quality over quantity any day for me plus NO GUARANTEES the caustic crap is killing what it should instead of just damaging something else in my body. To each his own but I feel more alive and at peace just making the decision to stop than I have since this started. Someone would have to knock me out and chain me down to put me in the chemo chair again. My oncologist won’t be happy for sure but I am. Hugs, M

mojogirl67's picture
mojogirl67
Posts: 263
Joined: Oct 2018

I can not type on a little phone, lol. I made it to my daughter's for my doc visit tomorrow and was replying from my phone so please excuse the crazy typos. I did make it out of first grade, lol.

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

youve definitely made your decision. It also sounds like you’ve found peace in that. I have a feeling I will be following in your footsteps after my May appointment with the oncologist.  Please keep us posted. 

Hugs & prayers for you tomorrow. 

mojogirl67's picture
mojogirl67
Posts: 263
Joined: Oct 2018

I have decided no more. Each of us have to figure out our best path that will give us peace. I tried to look for your history but couldn’t pull it.. probably my fault, lol. I know some of the thoughts weighing on you and I pray you find clarity as well as recovered health and happiness no matter what lies ahead. Thank you for thinking of me during your own battles. I so appreciate it! Hugs your way, M

Ruthmomto4's picture
Ruthmomto4
Posts: 638
Joined: May 2013

I have no experience in how any of this feels, and you do not need my approval, but I agree with your decision 100%! Enjoy your life feeling well. 

Canadian Sandy's picture
Canadian Sandy
Posts: 521
Joined: Jul 2016

After being so sick from chemo i ponder that decision also. I remember at the time in 2016 I would choose quality over quantity also. My cancer has been Ned since then so have been very lucky. Of course being older than you makes a difference. We do what we feel is best and is the right decision. 

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