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Round One And It SUCKS

mojogirl67's picture
mojogirl67
Posts: 251
Joined: Oct 2018

I made the two hour drive to the mountains after disconnecting from the pump yesterday. I was noticeably fatigued yesterday and I had to talk myself thru the drive, picking up a few groceries and never thought I would make it into the house. But, I did. I have to turn around and head back on Monday but these few days at my home are worth the drive. My daughter is a big help when I'm there and her 4 boys keep me motivated but I am so worried about picking up something from the kids with a compromised system. It's funny the thoughts that are coming and going in my head...I'm trying to let them just come and go while trying to stay focused on kicking this. I've had 5 rounds of chemo before surgery and I'm honestly thinking of doing only two more besides the one I just went thru. That puts me at 8. 19 lymph nodes removed during my resections were negative so I am hanging on to that. The thought of just pouring as much as I can stand on for good measure doesn't make sense with all of the side effects that come with it. The studies I read seem to point to a 75% recurrence rate in most but I am shooting to be in the 25% without. Why can't it be me? If I have a recurrence, I would consider surgery but I'm not someone who could be on continuous chemo. I would rather have my quality over quanity but respect the folks here who have endured so much and continute to push the rest of us to fight. I slept from 9 last night until 9 this morning and I still have the drags. I had crackers, water and Zofran by the bed and downed it all before attempting to get out of bed due to the "yuck" I first felt stirring around. I'm not sure how my insides are going to respond to everything after going thru the liver resection and colon resection followed by this God-awful chemo. "Monkey mind" and "chemo brain" are very real and I am fighting them both right now. I have always been a person to approach life with gratitude and I still do but boy, I am really dealing with frustration and anger at the moment. Hopefully that will all turn into fighting energy for me as it passes thru out the day. This is just the first day after disconnect so I know more little "chemo perks" are coming...the gift that keeps on giving. So far, I have had very little cold sensation, more of just a muddy taste when I woke up and that draggy feeling. Hoping to shower and walk to increase my energy level some and lighten my thoughts. Venting here helps and I promise you, there will be more to come, lol. Still wishing good things to all here...Hugs, M

Nazareth
Posts: 88
Joined: Nov 2017

IF you can, drink caffein if you have to drive yourself as the exhaustion from chemo can become overwhelming at times- better yet try to get soemone to drive you if possible.

No lymph involvement is good- a nice positive- with cancer, we'll take all the positives we can get-

[[but boy, I am really dealing with frustration and anger at the moment.]]

Very normal- but remember, this too shall pass- while the chemo sucks- before you know it, it will be over, you will have made it through even though it was terrible, and bit by bit you will begin to feel better- and be glad you stuck it out as long as you did- knowing you did everythign you possibly could to beat this monster- Just when we think we can't- we give it 'one more try' and find that we could-

Your exhaustion draggy feeling will gradually dissappear- but to be honest- even after a year for me, I still get a day or two here and htere durign am onth that I get overwhelmed with exhaustion- but by and large, I'm havign mostly better days now- it's just when i over do it that the next day or so i get exhausted and fall asleep during day for a coupel of hours- Just listen to your body- it needs the rest- and go with it as much as you can- We're tougher than we think- especially when we get so down fro mthe chemo- we still have reserves to draw on despite feeling liek we just want to stop-

SandiaBuddy's picture
SandiaBuddy
Posts: 909
Joined: Apr 2017

So sorry you are facing these tough side effects. "Chemo is great," said no one ever.  The statistics can be really haunting.  But there are so many variables, so sometimes the statistics they pin on you are not reliable at all.  For me, the best thing that I can do is to fight and try to live each day to its fullest.  Rest assured that those on this board understand what you are going through and will support you no matter what course you take.

I don't know if this abstract would be of any interest to you: https://www.ncbi.nlm.nih.gov/pubmed/31019569

mojogirl67's picture
mojogirl67
Posts: 251
Joined: Oct 2018

There are so many variables with all of this. I am trying to make the best decisions based on so many things. When your body is highjacked by this nasty chemo, things can get muddy for sure. This round was more emotional than anything and I know my level of resistance to do the chemo is adding to all of it. It's beautful here today and althought I won't be hiking, I am going to try and soak up some of the sunshine and fresh air in hopes of a better day. Hope you are out hiking "your canyon" and happy! Hugs, M

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

It sucks!  I so relate to what you wrote… I disconnected from the pump on Wednesday and I’m still dealing with the nausea, the neuropathy, the fatigue. I don’t feel like “me” and I struggle with that. I feel like life is passing me by.

 I’ll keep you in my prayers. 

mojogirl67's picture
mojogirl67
Posts: 251
Joined: Oct 2018

Prayers going up for you as well. I'm not sure how many more mopup rounds I will do. I know it is the chemo adding to it but I just want to cry, lol. Problem with that is the chemo makes my eyes hurt when I do, lol. I guess we are stronger than we think we are and this will sure put you thru that test. I am going to try and get some fresh air and exercise today..seems to always help. I am hoping your side effects ease up and you have some good days before they line us back up. Hugs your way, M

Butt's picture
Butt
Posts: 323
Joined: May 2018

You don t have to tell me what chemo is :( Good news when you will get done with chemo sessions you most likely will have ‘clean’ body. I mean free of mets. Sweet word remission. Hope it will last for the next 10 years and we will go from there. Butt.

myAZmountain
Posts: 277
Joined: Apr 2018

Eight rounds of Folfox was  what I was told by Mayo PHoenix oncologist was their protocol, also my oncologist in Virginia said basically the same thing. You can also convince your doc to reduce your dosages, have been told it doesn't effect the outcome (So why hit us so hard in the first place??) My last 3 were reduced and and were slightly more tolerable. I am reading a very interesting book if you are interested in alternative theories and treatment of cancer, advocating for less toxicity and more complimentary therapies. It is called "How to Starve Cancer" by Jane McLLeland, Stage 4 survivor. Highly recommend. Do you also get IV Steroid with your infusion--I got 10 mg. of Decadron each treatment, you may not need to do the oral dose? I also remember being terrified of what chemo was doing to my resected colon --its done okay so far, as long as I don't eat raw cauliflower lol!! Love and strength!

mojogirl67's picture
mojogirl67
Posts: 251
Joined: Oct 2018

I do get the IV steroid and oral steroids for two days after disconnect. It usually kept me wired up but this first round was completely different and I crashed in terms of my energy level. I am not sure how this will play out for me. I guess I will take one round at a time. I feel a little better today so maybe the tide will turn and I'll gear up to fight again. Thank you so much for taking the time to send encouragement. It really makes a difference. Hugs, M

Trubrit's picture
Trubrit
Posts: 4892
Joined: Jan 2013

I am not going to tell you any different.  It is horrible and it is miserable and it is going to put a damper on your little mountain home. A damper on everything.  

Focus your eyes on the light at the end of the tunnel. Look around you, as you sit in your little home, and think of what it is going to be like when you are all done. When you are finished with chemo and surgery and side effects. What it is going to FEEL like to be you again, to LIVE and to ENJOY the beauty that is all around.

Don't force it now, while you need to keep somewhat active, because that does indded help, let it be something to look forward to, something to live for. That moment when you can say I am NED and take in that mountain air, and know it is the joy of your life that will keep you alive. 

Even though I have reached that precious five, I also believe that I have to continue to make it happen. Continue to DO in ordre to make it to ten. I have to live, it is not just going to happen.  You will get to that point, but flow with what is happening now, even if it does suck, but never lose sight of what it is going to be like when you are done with the treatment and can start 'living' and being you agian. 

HUGS

Tru

mojogirl67's picture
mojogirl67
Posts: 251
Joined: Oct 2018

Tru as always, there you are. You run with that five years as hard and fast as you can.  Your words brought tears to my eyes and I know how much truth is behind them . I am trying so hard to hang on to those things. I'm not sure why this round knocked me down so much, more so emotionally than anything. All I wanted to do is cry but the chemo makes my eyes hurt when I do...another wonderful perk. I am trying to flow with it but I have felt so much anger and frustration with being "chained" to this miserable disease. I want to lash out at all it has taken from me but there is nothing or no one to lash out at. I can't side step it...can't run from it...It seems to keep tapping me on the shoulder saying "I'll never go away". My body is still in recovery mode from both resections so I am sure that plays a huge part in the way I am feeling. I have a daughter here in the mountains and I think I am going to stay with her tonight until I can't get my head wrapped back around all of this emotionally. I am really struggling with quitting the mop-up and taking out the port. Maybe those thoughts will change and I will finish it out. You are such a blessing and hope to this board and I am so grateful for the insight and encouragment you give. It has made a difference in my thoughts and I am sure in so many others. Huge hug your way...M

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

 I think spending the night with your daughter tonight sounds like a great idea! Sometimes just the connection to someone we are close to helps our perspective. 

I hope & pray today is a better day for you. 

Elaine

SandiaBuddy's picture
SandiaBuddy
Posts: 909
Joined: Apr 2017

If you are considering discontinuing the chemo, you may want to get the oncologist to help you slice the statistics really thin.  Not just what the percentage chance of recurrence is with and without the chemp, but also the advantage chemo may or may not give you with a recurrence.  I have never researched this fully, but I think that for some, chemo only gives a two-month survival advantage.  If it were me, I would carefully consider if days, weeks or months of misery are worth the possible advantage.  I have no idea what I would decide, because I am not currently facing this issue.  Sorry that things are so tough for you right now.

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

Thank you, Tru.   You always seem to find the right words to say. I know they’re not just “words“ but are deeply felt based on your experience. Please keep putting that hope & encouragement out here. 

 

 I do agree with you that we have to live… That it is not just going to happen.  The darkness comes when the chemo  takes me to my knees and getting off the couch is an effort.  That’s when I really question whether this is all worth it. 

 

Thank you you so much for reminding me that it might be. 

 

Elaine

NewHere's picture
NewHere
Posts: 1110
Joined: Feb 2015

No way around it.  I am not a happy camper for a week, though I squeeze things in even with all that on the bad week, then really enjoy the good week.

Nobody will call you out one way or the other on what you do. And 8 treatments may be just as effective as 12.  

I have no choice with my chemo, I stop and I am gone.  I may change my mind, but the quality of life on the good week is fine (and I do more physically than most people would ever consider during the good week) and even the bad week, not horrifc by day four or five.  I just need to accept I will need to chill and enjoy couch/tv time a bit more.

 

 

Annabelle41415's picture
Annabelle41415
Posts: 6244
Joined: Feb 2009

Yup just had a feeling you would crash after disconnect because it is so common.  Glad that your daughter is there to help you but you are right you need to stay away from germs and grandkids are a magnet.  During treatment my doctor told me to stay away from schools, birthday parties (including grandchildren), and not to get in close contact with anyone with a cold or flu, also I'd wear a mask going into the doctor's office and they provided those upon check-in as hospitals are known for bacteria everywhere.  If one of the grandkids had a sniffle it was a no-go.  It's hard during this time but you need to do what you can.  Hope you can get your strength back soon.

Kim

mojogirl67's picture
mojogirl67
Posts: 251
Joined: Oct 2018

Thanks for weighing in Kim...The grandkids push me to keep rolling but four boys are nothing but a bundle of germs running around, lol. Being with them for a while is good but then I have to have my quiet space. I have a room upstairs that I use and can pretty well keep to myself in so that helps. I have never said "wash your hands" so much in my life, lol. You are on the money about the fatigue and disconnect. This has been the worst round of the chemo by far. My emotions took a huge hit and the overall "yuck" feeling was worse than ever. I know my liver recovery is still ongoing and that probably comes into play. I am still struggling so hard with continuing mopup chem. I don't think I am going to do anymore rounds and take a watch and see approach. I'm not 100% certain yet. I have an appointment with my oncologist on Tuesday for bloodwork and a chat so I think I will see what my numbers are showing and just have a heart to heart. Thank you so much for sharing and the encouragement. Hugs, M

Trubrit's picture
Trubrit
Posts: 4892
Joined: Jan 2013

I will be doing the whole airport waiting and flying thing on Tuesday, so please know that other than a quick glance at the time, now and again, my thoughts will be with you as you make your desicion. 

Actually, they are with you now, but with a few distractions, but Tuesday is yours. 

Tru

mojogirl67's picture
mojogirl67
Posts: 251
Joined: Oct 2018

I'm not 100% certain I will stop the chemo but it's looking that way Tru. The small percentage of beneifit for the chemo is just not adding up to enough for me. With this first round being so hard on me, I know the others will be cumulative and not any better for the most part. I came out of the gate so strong initially and it has taken a toll on my body and spirit. The body it can have but not my spirit. Quality over quanity is major for me so I am truly thinking of stopping. That will give me 6 rounds under my belt and no one can guarantee that dumping more of the crap into my body will make a difference. The recurrence rates at stage iv are 75% regardless so it's a gamble. All of my research during my husband's cancer and my own suggest that 8 rounds have shown to be as effective as 12. Based on that, I may try to get thru two more rounds but I'm not sure yet. Surgery I would consider again but life long chemo is not. I am approaching this from a life I have been blessed in and I am truly grateful for and not from a "give-up" perspective. I just know me and the quality of life I want to live. I'm reaching thru the miles and hugging you hard for all of the wonderful support and comfort you have given me on this site. Safe travels and good things wished your way!! Huge hug...M

MsLindaG
Posts: 5
Joined: May 2019

I've been thinking the same thing. Just finished treatment #7 and they recommended 12. Not sure how benefit is worth it. Hard to know what to do. Thoughts and prayers as you make your decision.

Trubrit's picture
Trubrit
Posts: 4892
Joined: Jan 2013

I will hold you hand throughout the journey. 

While I will not try to influence you, one way or the other, I will continue to give you hope.  

Your friend, Tru

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