The challenge of "living joyfully in the NOW" when you feel like crap

MoeKay said:

Linda,
I don't post very
Linda,

I don't post very often, but I always try to pop in and read your posts. You are such an inspiration and I am amazed at how you can always put a positive spin on every twist and turn your cancer journey takes. You rebound almost immediately from any disappointments with which you are faced and are truly such a positive role model for the people on this board. If I had to list your one shortcoming, it would be that you are being way too hard on yourself.

I can't even begin to imagine what you are going through at this point, but I know I would feel entitled to have a pity party for myself for much, much less. I hope you are through this extraordinarily difficult time in very short order!

Be well soon,

MoeKay/Maureen

maggie_wilson said:

linda
i'm so sorry you're feeling so bad, i do know how you're feeling. chemo makes me sick, period--nauseated, exhausted, achey, etc., but i was always happy to hear how you were so symptom -free and could enjoy life as much as you have, even though you've had a rough row to hoe. i doubt anyone here feels you have anything to apologize for--what i always take away from your posts is encouragement, even if i can't manage to feel good. i too have taken a lot of pills that make me gag or vomit, iv is so much better. i missed my chemo for the second friday in a row because this time my counts were a little too low. i was so bummed, even though i hate chemo so much. i just want to get it over with. they hydrated me at the doctor's with saline and zofran iv, and sent me home with 3 hydration bags, so i actually felt pretty good for a few days.

your radioembolism sounds rough, but promising, and i like that your doctor is encouraging you to take that beach family vacation. best thing for you, i'm sure. and i've always bet on you getting through what you need to get through, and having nice long life ahead of you. i still believe it. anything else is unacceptable.

hoping you'll be feeling better very soon; it really takes it out of you to feel sick.

love and sisterhood,
maggie

lindaprocopio said:

Thank you all for understanding. I AM feeling better each day.
I won't kid you, ladies, this hasn't been fun these past few days. As hard as I've tried to stay super-hydrated and to force-feed myself healthy food (a joyless 'open-your-mouth-&-shovel-it-in-&-chew-&-swallow' routine), I've dropped 10 pounds in 4 days. Ordinarily I'd be thrilled during swimsuit season to look so svelt, but the admonition I got from the radiation interventionist is that, with late-stage cancer, "if you don't feed the cancer, it will eat you". He actually said "You're eating for 2 now." (Me and my cancer).

Radioembolism is only for highly motivated and compliant patients. It's a grueling procedure and the nausea and fatique and discomfort is much greater than I anticipated. So you have to be prepared to MAKE yourself eat, MAKE yourself hydrate, MAKE yourself move around, MAKE yourself take all of those damn horse pills you need to ward off infection and acid and God knows what else. Honestly, this experience reminds me more of how I felt after my hysterectomy, so SURPRISED to feel so BAD! This pitiful whiner can't be ME, can it?

But I feel I've turned a corner. I actually ate something that tasted GOOD today, and with that I know that I can do better about getting adequate calories down. The first couple of days I could only walk about 30 yards and would have to sit down and rest. Today I was able to cut back some of my peonies and irises and make it all the way around the garden doing deadheading (slowly; stopping often) without having to plop down on the grass. I stayed up all day without laying down. I was able to lay on my stomach to suntan my back; the tenderness in the liver area from the procedure is gone. My oldest son was in from Pittsburgh to check on me, and we had a family 'pool day'. I can't go in the pool for a few more days because of my incision, and I had to keep 10 feet away from everyone due to my radioactivity. But I could still watch the grandkids laugh and swim and pretend to enjoy a barbeque. And I'm sunburned pinky-brown.

Speaking of the grandkids, Emily (10) looked for a moment when the 2 of us were alone, keeping her 10 foot radiation distance, to ask me, "Gram, I heard you lost 10 pounds. Are you really okay?" (Her parents need to assume she is ALWAYS listening and watch what they say!) Long ago she made it clear she doesn't want to be caught by surprise and she grilled me on how she might know that the end for me was near, so she could be ready. At the time I told her I thought that I would get really super-skinny and be very weak. And I promised to tell her if I thought my death was near; it was so important to her not to be caught off-guard like one of her little friends that suddenly lost her grandpa without warning, although he knew he had cancer for months. (She was so horrified at the thought of no warning). It was so hard to see her serious worried little face and be radioactive and not be able to hold her and comfort her that this is temporary. Right now maybe it LOOKS bad from her view, but it's TEMPORARY and not the beginning of the end. I do believe that. And I think she'll be reassured at my growing strength each day. So sad to see your loved ones deal with all this, though, isn't it? She's always been one to crawl into my lap and rest her soft cheek against mine and watch TV and chit-chat, both of us taking comfort in just cuddling up against the world. We'll both feel better when we can safely do that again. 3 more days of active radioactivity. Then 4 months of dying cancer cells!

Thank you all again.

lindaprocopio said:

Thank you all for understanding. I AM feeling better each day.
I won't kid you, ladies, this hasn't been fun these past few days. As hard as I've tried to stay super-hydrated and to force-feed myself healthy food (a joyless 'open-your-mouth-&-shovel-it-in-&-chew-&-swallow' routine), I've dropped 10 pounds in 4 days. Ordinarily I'd be thrilled during swimsuit season to look so svelt, but the admonition I got from the radiation interventionist is that, with late-stage cancer, "if you don't feed the cancer, it will eat you". He actually said "You're eating for 2 now." (Me and my cancer).

Radioembolism is only for highly motivated and compliant patients. It's a grueling procedure and the nausea and fatique and discomfort is much greater than I anticipated. So you have to be prepared to MAKE yourself eat, MAKE yourself hydrate, MAKE yourself move around, MAKE yourself take all of those damn horse pills you need to ward off infection and acid and God knows what else. Honestly, this experience reminds me more of how I felt after my hysterectomy, so SURPRISED to feel so BAD! This pitiful whiner can't be ME, can it?

But I feel I've turned a corner. I actually ate something that tasted GOOD today, and with that I know that I can do better about getting adequate calories down. The first couple of days I could only walk about 30 yards and would have to sit down and rest. Today I was able to cut back some of my peonies and irises and make it all the way around the garden doing deadheading (slowly; stopping often) without having to plop down on the grass. I stayed up all day without laying down. I was able to lay on my stomach to suntan my back; the tenderness in the liver area from the procedure is gone. My oldest son was in from Pittsburgh to check on me, and we had a family 'pool day'. I can't go in the pool for a few more days because of my incision, and I had to keep 10 feet away from everyone due to my radioactivity. But I could still watch the grandkids laugh and swim and pretend to enjoy a barbeque. And I'm sunburned pinky-brown.

Speaking of the grandkids, Emily (10) looked for a moment when the 2 of us were alone, keeping her 10 foot radiation distance, to ask me, "Gram, I heard you lost 10 pounds. Are you really okay?" (Her parents need to assume she is ALWAYS listening and watch what they say!) Long ago she made it clear she doesn't want to be caught by surprise and she grilled me on how she might know that the end for me was near, so she could be ready. At the time I told her I thought that I would get really super-skinny and be very weak. And I promised to tell her if I thought my death was near; it was so important to her not to be caught off-guard like one of her little friends that suddenly lost her grandpa without warning, although he knew he had cancer for months. (She was so horrified at the thought of no warning). It was so hard to see her serious worried little face and be radioactive and not be able to hold her and comfort her that this is temporary. Right now maybe it LOOKS bad from her view, but it's TEMPORARY and not the beginning of the end. I do believe that. And I think she'll be reassured at my growing strength each day. So sad to see your loved ones deal with all this, though, isn't it? She's always been one to crawl into my lap and rest her soft cheek against mine and watch TV and chit-chat, both of us taking comfort in just cuddling up against the world. We'll both feel better when we can safely do that again. 3 more days of active radioactivity. Then 4 months of dying cancer cells!

Thank you all again.

Rookerbird said:

New Perspective of Feeling Lousy
Hi Linda -

I was always amazed that you physically have felt so great while your liver mets grew and your CA-125 climbed. But, I was HAPPY for you! It made me feel an indirect victory over this disease. So don't apologize for an imagined lack of empathy/understanding. You're always there for everyone!

I haven't had a normal energy level in many months. I declined an all-expenses paid beach trip last week because I didn't feel strong enough to travel. But, we CAN reach for the beauty of every day, and your posts always encourage/inspire us to do so!

Glad you are starting to feel better!

-Kathy