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Where am I in my journey?

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

Hello everyone!

You may be puzzled by the title of this post but you couldn't possibly be more than am about my situation. No one knows the hour, day, month or year of when everything is going to fail and there is no turning back, I am not expecting to find this out. It's just strange to me that I have sort of felt this way since day 1 of my cancer diagnosis. How long do I have? What is going to happen?

So I have just begrudgingly followed the advice of surgeons, oncologists and other specialists to try to improve my odds. I have reluctantly taken chemo and radiation treatments. It seems I have had to have a lot of encouragement from them and family to do these treatments. Not that I have wanted to give in or succumb to the disease, I've just wondered what the suffering would be worth. The colectomy was a no brainer but I've seen the damage chemo and radiation can do. Being a retired RN and having worked at a cancer center for a while I think may be partly (or a lot) to blame for my reluctance.

Now that I have been through all this and survived, I'm glad I did except for the fact that I can tell my body has been through what I call radical and barbaric treatment. It has taken a toll. Also now that I have mets to the liver, I've had an ablation done for that which was fairly rough and am scheduled for the Y90 treatments. All of the above I said I would not do when I was first told about them. Funny how things change when you are face to face with a grim outlook. 

It seems when I could no longer tolerate chemo, my Oncologist took a dim view of that and decided for himself that I was giving up. I had a severe reaction to Oxalaplatin and 5FU quit working. Last NOVEMBER after news of the mets, he looked very downtrodden and told me I had 4-6 months to live. Well! That is when I searched out the interventional radiologist for myself and had the ablation. He is much more positive and even now says we could possibly get my CEA down to nothing after the Y90's.

Hence my confusion. According to the radiologist there IS hope, but my oncologist seems overly negative. I had not even visited him in 7 months and during that whole time never got a call from him or his nurse to inquire how I was doing. I thought that was very strange, especially considering that he thought I was so close to the end, plus I had a port that is supposed to be flushed every 6 weeks. Nothing. They said when I finally did go visit, that they were surpised to see me and didn't really know what was going on? What sort of cancer team is this? I did report this to the office manager. Oh well, I think at this point unless I want to go to a new doctor out of town, I may as well just work on this Y90 treatment and if I need a new plan then address it. I don't really know what to do about that. Two years into treatment I think that is very odd, so maybe makes sense why I feel confused.

So I don't know what to believe about where I am in this journey, I know my body feels very, very fatigued and depressed. I don't have much desire to do anything, take any vacations or such. My family is in the continual denial and avoidance phase. Except my sister who seems to concur with Doctor Death my oncologist. She told me that she felt that if I had not had the ablation back in March that I would have be gone a long time ago! That shocked me, I do not feel that way at all.

Forgive the diatribe please, just so much has happened now and the thoughts are non stop obsessive over everything. I am scheduled to see a therapist Nov 1 and also started with another who wanted to go through my whole life history up to now which I don't think is what I need. I think I need some sort of "end of life care", not hospice but to prepare me and help me deal better with all this and my family. They are not handling it well at all.

Also a recent family 'event' that caused me severe stress and unhappiness that was completely out of my control seemed to set me back. For 3 days now I just want to crawl in a hole and that just fuels the hopelessness sorts of thoughts. The son who does not work to help me out, well we cannot agree on much. The other day when he took me for my pre-op visit, got angry over something silly I said and started acting ugly and wouldn't speak to me. I told him just to take me back home, I couldn't make this 2 hour trip under these circumstances. He just ignored me and kept driving so I started crying and couldn't stop for a while. He never apologized for making me cry, I just moved past that and went for the pre-op. I cannot imagine ever making my mom cry and be ok with that. He has aspbergers so he can be very difficult. This does not even include the other family event...my younger son and his wife had a blow up and were about to separate. They have small children, it would have been ugly! So I really hope a therapist can scratch the surface of all this and help me out a little.

This is really all TOO much to deal with at once and if I am writing all this online I obviously have no one to talk to about it all. I've even had thoughts if I should even keep fighting the cancer to live this life that I have. Super negative yes, but reality. I really do normally try to see the good things in life. I do. I was even planning a really nice bucket list trip to Hawaii, first class but with the son that I cannot get along with. He is the only person that could go with me at this point that I can figure out, but after that blow up with him the other day, that would just be crazy to even attempt a trip like that. I haven't even told him that I have cancelled the trip. It's not worth arguing over.

So where am I in my journey? Not in a good place but I actually meant how long might I possibly have left to fight. No one knows for sure and no doctor seems to want to tell me time frames. Maybe it's best not to know?

 

Woodytele
Posts: 163
Joined: Apr 2017

I’ve had multiple radiation treatments, and all had pretty good success.  My radiologist has a great positive personality, and I feel good walking out of  there.  The opposite for my oncologist, usually fear what he’s going to say, negative lots of times.  I wouldn’t want to know how much time I have, since I really can’t control that much.  We asked the Dr. upon our original visit, and I got 2-3 years, so that was depressing to hear, and didn’t want to ask that again.   

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

Sorry to hear about your situation. I think I would love to hear 2-3 years but I guess my situation is different. I'm sure that it is. Since my Oncologist incorrectly said the 4-6 month prognosis, I've sorta felt like I'm on borrowed time.

My interventional radiologist told me 1-2 years and that was with Y90 treatments and it was back in January of this year so it's already been almost a year. I think that is why I feel confused.

I know that they are often wrong but if I'm going on my feelings it's not all that positive right now.

The radiologist is also retiring in January for some odd reason so I don't know about his replacement.

One bad day sure can make for 3 long days of self pity and depression...I'm done with that!

 

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

Are you respectable? Did you see surgens for consultation? If you are not respectable they can put a pump in your belly that gives chemo directly to liver. After that many become respectable. They stopped HAI pumps but switched to another type of pump. I know my surgeon switched. They cut 60 percent of my liver it grew back in a month. Change oncologists.Butt.

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

What are you meaning by "respectable", I have not heard of that term used in this case. I have heard of the HAI pump, it could be my next step, i'm not sure.

So do you recommend having liver surgery, such as resection? I'm amazed that your liver grew back like that! Was there cancer in the new growth?

Yes, I do think I need a new oncologist, it's just that I already saw one in another cancer center in town and two at the current one. I don't have many options really unless I go back to the other cancer center. It's a bit tricky.

Thanks for your thoughts and suggestions.

Karen

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

   I don't often crawl out of my hole to post but I really do know where you are coming from.By the way I don't think that Butt was asking anything out of line , I am sure the respectable was certainly meant to be resectable.  When I was dxed with stage 3 c colon cancer my surgeon told me that it was at the upper level of aggressiveness. He sadly assured me that it would kill me , probably within three years. My oncologist told me the same thing. They both suggested if there was something I really wanted to do , do it now.   I had decided from the start that I would take any and every treatment they offered . Not because I was scared of dying but because I really dislike cancer. Halfway thru the treatment I somehow realised that cancer would not kill me.  Life has not done me many favours and at 68 I live alone and still work four days a week.  Cancer treatment has left me a shadow of what I was  but outsiders don't see that side of me. I still try to live a healthy life and I guess that is what most people see.  I too wonder how it will end. Undoubtedly one day I will bite off more than I can chew but I don't really care. I said I would survive and I have. I'm coming up for my 21st anniversary , still cancer free. Sometimes I wonder if the secret to survival is not really caring if you do or not. I hope that life cuts you a few breaks and that you are able to enjoy at least some part of a remarkable life, Hugs Ron.

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