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Thread: Away from Mom - trying to plan my time

  1. #1
    Newbie New User
    Join Date
    Oct 2019
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    1

    Away from Mom - trying to plan my time

    Hello all, I've enjoyed and grieved reading your posts.

    My mom is 56 and was diagnosed with Stage III PC with encasement of major vessels in March 2019. CA 19-9 was 237 at that time. She has completed 8 rounds of FOLFIRINOX and had SBRT between rounds 4 and 5. After a couple rounds of chemo, her CA 19-9 nearly normalized at 39. She has handled this all like a champ - diarrhea, alopecia, and weight loss but great spirits, good energy, and feeling good. She is intentional about what she eats to minimize digestive side effects.

    Recently, her CA 19-9 has risen to about 1,750. Repeat CTs have shown essentially stable disease, with a couple of places in the peritoneum and near an ovary that may need additional assessment. Her docs have decided to switch her to Gemzar/Abraxane to see if she has a better response. I am truly hoping that she tolerates this cocktail as well as the FOLFIRINOX, but I know it's hard to predict. Her quality of life has been so good, normal except for her diet and going to chemo, that I would hate to see it decline due to the new chemo.

    It's been 7 months. Nothing dramatic happening, yet, but as you all know it is terrible waiting for the other shoe to drop. I live in North Carolina, and she is in Texas. I've been fortunate enough to get to see her about every 4-6 weeks since diagnosis, but right now I feel like we are in this waiting zone, where we can make plans for the holidays and hope for the spring, but might not get there. I am having a hard time determining how crucial it is to be with her as much as possible at this time. I obviously want to be there full time but can't right now. I dread the idea that suddenly she will decline and the regret that I could have spent 2 good months with her while she was feeling good. I don't want to miss a chance with her. I still have a lot of hope, but I don't want to wait until I get "the call" that says she's not doing well to rush home. Do we make this Christmas a big deal since it might be her last? Do we do it normally because she may get more? Do I take her on a big trip while she has energy? Do I take a leave of absence from work now while she feels good, or wait until she's near the end - which could be who knows when? I wish more than anything I could be home with her, but I also know I can't turn my life upside down. The regret might be intolerable, though.

    I know there's not a lot of anything concrete y'all can offer right now, but experience and wisdom and hope and virtual hugs are all welcome. Thank you, and prayers to you all.

  2. #2
    @lindygrins Hang in there! My situation was somewhat similar to yours as my mom was 52 when she was diagnosed with Stage IV pancreatic cancer. I was lucky enough to only live about 1.5 hours from her and thus basically dropped my life to help care for her during her brief illness... I do not regret that decision, but I also understand that I was very lucky to be able to do so. I went with her to all her appointments, hospital stays, etc., and I still feel like it wasn't enough.

    No one can say what is to come for your mom - all things considered, she sounds like a trooper! She will hopefully have many many more holidays to come with your family. If you want to take a trip with her - do it. If you want to take a leave of from work - do it.

    Unfortunately, one thing is for certain - time is not guaranteed with cancer (this type especially). Spend as much time with her as you (reasonably) can and you won't regret it. That's the best advice I can give! Sending you lots of thoughts of prayers from Boston.

  3. #3
    Senior User
    Join Date
    Apr 2016
    Posts
    115
    All those answers are so hard to come by. I’d talk with her and figure out what she is thinking and her wants. My dad didn’t have a “bucket list” and I just went with the flow but I had a lot lol flexibility. Do what feels right at the moment and accommodate her. If you feel the need to be with her now, do that. You’ll be able to work things out in the long run. I did a lot of flying in those last 6 months and my own family was very supportive. Do what you can and know that is enough.
    Jan 15, 2016 Father went to the ER with extreme abdominal pain...
    Jan 16, 2016 unofficially diagnosed with pancreatic cancer stage IV in the tail, too many mets in his liver to count, spleen and lung.
    Folfirinox-2 doses in February 2016
    March 2016-discont. chemo
    Apr 2016 severe onset of diabetes
    June 15, 2016 Celebrated he/my mom's 47th Wedding Anniversary eating pier fries/fried dough (I think this was his goal...to live to make it 47 years)
    June 15th, 2016 at 11:00 PM experienced sharp abdominal pain not managed with pain meds at home
    June 16th, 2016 at 3am went into the hospice home for pain management (walked into the facility).
    June 16th, 2016 by 11am...we learned this would be where he would spend his last days (shocked because at 9am he took a few sips of coffee)
    June 17th, 2016 at 8:20 pm...sun was setting, windows were open, birds chirping, my mom/me/my brother were all by his side with our hands on his body as he took his last breath at 68 years old.

  4. #4
    Regular User
    Join Date
    Oct 2019
    Posts
    11
    Hi @Lindygrins,

    I am going through a similar situation with my father who is 65 and just diagnosed, starting chemo next week.

    In regards to spending time with her, I would follow your gut instinct. Living in a different state can be hard and lonely. Call, text, face-time her as much as you can. You would be surprised on how much support a simple call makes, not only for her, but you as well. Try to take things one day at a time and enjoy life in the moment as much as possible. Don't focus so much on taking the big trip, focus more on quality of time spent together. Some of my best moments spent with my Dad were sitting on the back porch and just talking about life. Thoughts and prayers are with you.
    Father age 65 male, excellent health, no symptoms, routine CT revealed pancreatic mass
    Oct 2019...CT scan for hernia pain reveals 2 x 2.2cm ill-defined mass body/tail
    Oct 2...CA 19-19 of 65.7
    Oct 2 ...Upper EUS biopsy...invasion to splenic artery, others veins/arteries suggest no local invasion
    Oct 7...CA 19-9 drops to 51.7
    Oct 8...additional CT scan reveals body/tail soft tissue mass 2.5 x 1.4 cm, main duct dilated up to 1.1cm, no definite local invasion, possible spot near liver
    Oct 8...PET body/tail lesion SUV max 3.8, peripancreatic soft tissue inseparable from lesion and 4th portion of duodenum/proximal jejunum, no definite evidence of metastatic disease
    Oct 18...biopsy...mucinous adenocarcinoma in background of extracellular mucin, no mention of cyst
    Nov 5...FOLFIRINOX begins
    ...followed by radiation and hopefully surgery for distal/splenectomy
    Staying positive in the face of adversity.
    Take life one breath at a time and be grateful for every moment.

 

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