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Update on my mom - not great

Akroger's picture
Akroger
Posts: 88
Joined: Mar 2013

After getting her CEA reading of 520 about a month ago, my mom's CT results are in, and they bear out pretty much what I feared and worse. My mom actually got the scan last week, but she was very evasive about sharing the information with me until I saw the papers for myself this past weekend, and I've kind of been in shock which is why it's taken me a while to post about it.

To recap, my mom had tumors in her lungs and liver in addition to her colon. The liver tumors were really pervasive early on after she was diagnosed, but the chemo had been doing a great job at shrinking and eliminating a lot of them. That seems to have reversed; six lesions doubled in size and there's a new one too. Several of the nodules in her lungs also grew, although no new ones were found there. The worst news is that the cancer has spread to her pancreas now, a centimeter met. From what I've read about mets to the pancreas, especially when it's not an isolated case, I'm pretty devastated. I know miracles are possible, but I already consider the past 22 months that my mom has survived to be a miracle, and I'm not expecting lightning to strike twice. So...not a very cheerful note right before Thanksgiving, I'm sorry for that. She's back on irinotecan now, a weaker dose than before so she seems to be doing all right so far, although the side effects are pretty horendous (extreme weakness, difficulty eating due to abdominal distress). I just want to make these days as happy for her as I can.

Yolllmbs's picture
Yolllmbs
Posts: 361
Joined: May 2014

I am so sorry for the diagnosis.  I will keep you in my thoughts and prayers.

 

Yolanda

fatbob2010's picture
fatbob2010
Posts: 467
Joined: May 2012

Hard way to start the Holiday Season...Thoughts a nd prayers of peace and comfort for the both of you. 

lp1964's picture
lp1964
Posts: 1240
Joined: Jun 2013

I share my sadness with you and your family. I wish you the strength to get through the current and future challenges.

Laz

Trubrit's picture
Trubrit
Posts: 5487
Joined: Jan 2013

I am indeed sorry to hear this news about your mother. 

I pray that she will have another 22 months and more as she struggles through these new mets. 

We are here for you, support and love, it won't take the pain away, but it will help. 

Blessings!

Sue - Trubrit

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

So sorry to read this. Big hug. 

 

 

Cathleen Mary
Posts: 827
Joined: May 2011

I hope the treatment team can find a combination that provides your Mom quality of life and time. She is very lucky to have you. Prayers for strength and reason to hope.

Hugs,

CM

Annabelle41415's picture
Annabelle41415
Posts: 6715
Joined: Feb 2009

That is a scary place to be when things are progressing even further than what you thought.  I'm sorry to hear this but hoping that if they shrunk before there is a possibility of them shrinking again.  Maybe she can get a second opinion as to another drug she might try.  Hope so.

Kim

Akroger's picture
Akroger
Posts: 88
Joined: Mar 2013

My sincerest thanks to all of you for your concern and for your kind wishes for my mother and family. I wish she would at least consider the idea of a second opinion, but from the beginning she's been pretty stubborn and clear about how she wants her care and treatment handled, and a second opinion was off the table from the beginning. I kind of wonder some days if she is just tired of fighting, of hurting and suffering like this. To me it looks like she is not trying as much as she could be, and I know that's awful of me to feel, because I see and hear how much she struggles with all of this every day. And yet I keep begging her to try a little bit harder, to take a single swallow of milk even if she worries she might not be able to keep it down, or a single bite of bread even if she can barely get it down.

Yesterday morning, after over a week of eating nearly nothing, she was saying things that didn't make sense, her sentences were garbled or she would mutter to herself or she'd use the wrong word. My brother said she'd been doing the same the day before too, and I've NEVER seen her like that so I was pretty terrified. She wanted to come to the family Thanksgiving party at my aunt's for us, but she warned us she wouldn't be able to stay long. That's fine, I assured her, secretly hoping that maybe we could convince her to stay longer in the hopes that with the whole family there and the warmth she'd get from that, that she might be more amenable to eating. And it worked! She ate barely a small plate of food, but ALL of us were cheering her on. And when I called from work this morning, she was feeling much better than yesterday which made me feel great too. I'm going to see her again tonight, and I hope she will still be doing better. I'm kind of ready for anything that might happen at this point - I'm going to try to push as much as I can to coax her to keep trying, to keep feeling motivated and loved and that we need her, but I get that we're going to hit a limit. 

Thank you again to all of you, including those of you who may just read my posts but not know what to say with a reply. That's often me too, because I read all of your stories but don't always feel confident about how I might respond. I hope you all had a great Thanksgiving and that you will be celebrating many more to come.

UncleBuddy
Posts: 1019
Joined: Aug 2013

It's hard being a caretaker, especially when the person doesn't want to listen. My brother is also on irinotecan only, a very low dose because of his low heart function. He is eating, unfortunately, he eats too much and not the right foods. He and dad are on low sodium diets but they give me such a hard time with it. We can only do so much. I do the best I can, and that is all you can do as well. Your mom is lucky to have you!

Lin

LindaK.
Posts: 506
Joined: Apr 2013

Sorry to hear about the advances in your mother's pancreas and liver.  I can feel your frustration at "not doing enough" but looking back at my husband's 2 years fighting colon cancer, I pretty much felt the same way all the time.  While he was on home hospice and then inpatient hospice, our daughter, a nurse, was almost manic with trying to get him to eat, move, talk, answer questions, etc.  I finally had to pull her aside and say "Let him be"  The disease was so advanced and he was on high doses of pain meds.  He was not himself, confused, delirious at times, etc.  It was hard for her to watch and not be able to help him.  He did not want to see anyone other than me and our daughter and her family.  He did not want people to remember him that way since he was quite a character and always the life of the party.  For that, I asked people to honor his wishes and stay away.  I'm glad I stuck to that even though some friends were upset with me and even one was bashing me on Facebook (yes a 61 year old man did this) for keeping him away.  I just know my husband was a proud man and I stuck to my promise to him.

Looking back, too, I wonder if I would ever go through all he did.  He was dx'd 2 years ago as stage II and doing chemo (Folfox) after surgery was left up to him, he was told it wasn't really necessary.  We talked him into it so he could fall into the 90% cure rate the onc. quoted.  He did everything every doctor recommended and still lost his battle in less than 2 years.  In August of this year we were told he had about 2 years left and 9 weeks later he passed away.  My saddest memories are of him on his many hospitalizations, obstructions, reactions from chemo, etc.  And for what in the end?  I think you should honor your mother's wishes, as hard as it may be on you.  I have some anger issues I am now dealing with, which is part of grief.  I have not heard one word from either oncology group he was treated at for 2 years since he passed away.  I am kind of surprised and wonder where he falls in the statistics now? 

I'm sorry to be so negative, but I'm a realist and once you hear "It's cancer" everything changes for the patient and their loved ones.  Thanks for listening.  Keep supporting your mother in any way you can.

Linda

Akroger's picture
Akroger
Posts: 88
Joined: Mar 2013

Lin, I feel for you. The food aspect is a huge challenge and together with all of the other side effects from irinotecan is hard enough to deal with. But the stubbornness probably drives me the craziest. Linda, I agree that sometimes it's best to back off, because my anxiety and pressure from me aren't going to do my mom any good. And most of the time I'm able to hold my emotions in and be gentle about suggesting a little milk or a small bite of cake or anything at all that she might be open to eating. But last Thursday was the first time I saw her trying to talk but not making sense, and that really kind of freaked me out. I can't express the relief I felt yesterday morning when she was not only making sense but managed to drink a full glass of whole milk with some honey!

And Linda, I already have a whole nest of anger issues that it's going to take me a lot of time to sort out once all of this is over. But there is one secret one that I haven't expressed anywhere else, and I wonder if I'm an awful person for feeling this way or if some other caregivers ever feel this too. That is, that sometimes I wish it would just hurry up and be over! :( She suffers like nothing that any of of us (who love her) can imagine, or help, and for what? We just end up suffering too, in our helplessness to do anything. Sometimes I think about how I will feel, when the fateful moment actually comes, but the prospect is too overwhelming, too numbing to really fathom. I do know what this current situation feels like though, and I ask myself if it can really be worse when I will know that she is finally at peace and not hurting or exhausted or suffering anymore. If she gets to a point where she can no longer fight, that will be insanely painful for me to accept. but I will have to. I get upset now too because she's trying to fight now, and sometimes it seems like it's not enough, like she is suffering pointlessly. I have to accept that too. You are all right though, the best thing I can do is try to be there for her in the way she needs (not the way I want).

I feel like the parent-child roles are switched, like I am the one providing the care and support and suffering because she needs me to do all of those things for her well-being. And I know it is juvenile of me to feel like way, but kids shouldn't have to go through this kind of grief for their parents, especially when we're still kids. OK, I'm almost 30, so I'm hardly a kid, but I probably feel like one a lot more than I should.

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

I'm one that doesn't really know what to say. But know that I'm sending positive vibes. I pray that she'll overcome this and get more time- quality time. Hugs to you.

Jan

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