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

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I have been so blessed with an excellent quality of life throughout my cancer journey, and find myself, following this radioembolization on Wednedsay, feeling lousy. I am uncomfortable (gassy) and jazzed up on steroids and sleepless. Food tastes way off, and though I am diligently force-feeding myself healthy foods, I have no appetitite. My one shoulder still aches from the long hours in the operating room and recovery room. I have to go lay down every 5 or 6 hours because the fatigue is overwhelming. I have 4 more days that I have to continue to take 20 pills a day that make me want to gag every time. And I find myself wishing away those 4 days and counting down the days until I am no longer radioactive and will start feeling better.

Which brings me to the reason for my post. How often have I encouraged everyone here to "live in the NOW", to find the little joys in each day and savor them? How arrogant of me; I can see that now from my new perspective of feeling lousy. I AM reaching for the beauty of every day,...the breeze from the window, the smell of roses, the love and concern I feel from my family seeing me suffer these past few days. But I just wanted to apologize if I ever made anyone feel inadequate and a cry-baby for not being able to pull out of the darkness and look for the joy and beauty. I see now that sometimes it can be a long long look upward when you are in a low place. You still have to do it, so as not to waste your precious days on this earth. But please know that I am humbled by my new temporary (PLEASE!) suffering, and more attune to what I'm asking of others in similar situations.

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I think I have read everything you have posted here and on the Ovarian Board. Informative, introspective, encouraging would describe your posts. Go easy on yourself, Linda dear. I don't think you realize what an inspiration and a blessing you have been to myself and others. Sharing your unique journey with your gift of communication has for me personally made it easier to understand and cope. Your candor, humor, and intelligence has many times lightened my load.
{{{{Linda}}}}
I am praying for you and hoping soon you will feel lots better. Norma

Cindy Bear
Posts: 570
Joined: Jul 2009

No need to apologize. All you've ever tried to do is encourage, educate and empower the other posters. I think they appreciate what you're saying. Enjoy the small things. Enjoy every sandwich. I came to these boards almost 2 yrs ago. I was angry, shell shocked, cynical and bitter. I'd just lost my mother and I couldn't understand why.. My first post was angry, and selfish but you responded with kindness and caring. You were the first one to reply to my post. I admit, I still have dark days, I still deal with anger, and sadness, a profound sense of loss. Honestly, there are still times when I think what's it all for, is the emperor wearing any clothes or isn't he? But you've made me a better person. That's your legacy . I think most of the women here would agree. You've made us better people.
I hope you feel better soon.
Hugs,
Cindy

Kaleena's picture
Kaleena
Posts: 2053
Joined: Nov 2009

Dear Linda:

Don't be so hard on yourself. You have touched the lives of everyone here. We are with you through your journey as you give us all of the details. You have given many of us hope and to "live for the now". Telling us that you feel lousy only makes you more part of us. You also need a shoulder to lean on. Sometimes you need to discuss things from your family so as not to make them feel bad, etc. You have done that here. We listen and we are holding you now until you are feeling better.

Even as you tell how you are feeling lousy, you are still encouraging others. You are a special lady.

May the sweet breeze of summer lift away that yucky feeling and start planning for that beach vacation!

{{{Linda}}}

Kathy

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Linda,

We can only speak from what we know...your words are always inspiring and have meant so much to myself and others....It is important that folks who have less symptoms at various points help carry the others who have more....

I am sending prayers the crappiness passes quickly and the gardens and the ocean once again beckon you :)

I believe we are all called to serve in different ways and so often we are humbled to allow us to serve others even more.

God is with you and so are we !

Laurie

MoeKay
Posts: 309
Joined: Feb 2004

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

Double Whammy's picture
Double Whammy
Posts: 2831
Joined: Jun 2010

Dear Linda-

Don't you dare apologize. Your journey has been yours. You have shared it and inspired, encouraged, and educated others. It's now our turn to support you and I know we all do. Unfortunately, I don't think there's anyone here who had radioembolism to offer advice, but love and support we've got plenty of. I hope that these bad times are short lived and kick the crap out of those tumors.

Suzanne

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

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

Rewriter's picture
Rewriter
Posts: 497
Joined: Dec 2009

not so joyful.

I, too, read all of your posts, Linda, and have felt informed, reassured, excited by, happy about, and all the rest of the range of emotions while doing so. You have been so honest about what you are feeling, and I'm glad that you have been pretty much symptom free up to this point and so enthusiastic about life.

You are often the first to jump in and care for all of us, and now we are here for you.

My goal is to try to live in the now, but I can't expect that I could ALWAYS do so joyfully. I would only suggest that you take each day as it comes; and soon enough, the good will outweigh the negative once again. As Maggie says, you will "get through what you need to get through, having a nice long life ahead of you...Anything else is unacceptable."

Jill

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

You have been through so much, it makes me so sad that you are feeling so bad. I know when I had those days of not sleeping due to the steroids everything seemed so much worse. I hope you can get some sleep soon. The fatigue has to be hard on you, too as you always seem to be filled with energy. Keep looking for those Joys in every day. Even if it is to count down the days only 4 to go, only 3 more to go and so on. As others have said no apologies are necessary. You are such an inspiration to all of us. That you are having some bad days makes you human, too. Sorry you are in this low place but please keep looking upward. Here's hoping that tomorrow is a better day for you. In peace and caring.

nempark
Posts: 683
Joined: Apr 2010

Linda Dearest: The surgery and medication are just making you feel lously, very soon you will be back to your old self again. I wish you a speedy recovery. Yes, enjoy every day. Love and best wishes. June

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

it does sound like you are getting stronger every day, can eat something that tastes good now, and will be gaining back some weight, and you're able to lie on your stomach again. the operative word here is "temporary." being radioactive and having to stay away from loved ones by 10 feet sounds like a trial in itself, especially with husband, kids, grandkids, but this situation is very temporary, then back to touching, holding, cuddling, kissing, all the things we love to do, plus feeling better.

my grandchildren are basically too young to know what's going on. they know gigi (as they call me) hasn't been feeling well, but don't know more. they draw me lots of cards, however, and seem to be especially attentive, particularly our 3 year old.

btw, while it's not particularly pleasant for those around us, i think we deserve to whine once in a while or more, and think it's good for us to complain. geeze, if we can't do it now, when can we?

a friend told me about a book i'm about to buy called "cancer has made me a shallower person." clearly not a book for everyone on this site, but frankly it fits for me. i'm much less patient, don't have the same sense of humor i did, don't care as much, but still do) what's going on in the world unless it's really important, and don't have as much compassion except for people suffering with cancer. people have other problems i know, too, but i've lost some of my capacity to respond compassionately when i hear of people's annoying ailments. serious ones are different. but, i have noticed these changes, and the title of the book made me laugh. apparently the woman who wrote it is not out of the woods with breast cancer, so she's writing from an experience-near perspective. i may post a review once i've read it, and either recommend it or not.

take care dear sister linda, with love,
maggie

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Was so glad to read your post that you are feeling a little better today. I have noticed the time of your last several posts. Sorry you still are not sleeping.

Glad you got to spend time with your son and grandkids. Those are very nice distractions. It brought tears to my eyes to hear about Emily's questions. It must have been so hard to not be able to give her a hug and comfort her (and you, too). You are such a great grandmother.

May your strength increase every day. I know the force feeding and force drinking when things taste so bad or indifferent. I pray that ends soon for you. Losing 10 pounds in 4 days is quite a weight loss. I hope you can continue to feed both you and the cancer.

Look for those Joys. Only 2 more days of all those pills. Being out in your garden was a wonderful distraction for you also. So glad you could be out there today.

Hoping tomorrow is an even better day for you. In peace and caring.

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Sorry to hear the after-effects of this process are so uncomfortable for you, Linda. The one good thing is this is temporary and the mountain of pills will soon disappear. It's unfortunate that you must also have difficulty sleeping that can help to quickly pass the time. It can be so difficult to undertake a treatment that makes one feel soooo bad. That strong determination that got you to undertake this will serve you well to get through it and come out better for having done it.
Just take it one day at a time...
Wishing a quick 'back to normal' for you.
Annie

Rookerbird's picture
Rookerbird
Posts: 100
Joined: Feb 2011

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

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Please be assured that I never took offense at your comments. I think we all give what we can at the time. You have given me so much hope, information, encouragement, and true amazement. YOur lust for life is infectious and admirable to me.

God bless you and help you regain your strength each day. Thanks for everything.

Mary Ann

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