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Parallel Universes

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Hi Everyone,
For some reason I keep thinking about how I feel like I am living in 2 parallel universes. I am interested in how everyone feels about this. Some days right now seem so normal, actually fantastic. We spend time outdoors, maybe go out with friends in the evening, just good stuff. Then as Tuesday rolls around we all get ready for Dick to have chemo and for him to be laying low for a few days. Then, we get back to some normal, all the while knowing that Dick has a very serious disease that statistics (I know statistics are so screwy) say is going to kill him in the future (2 months? 1 year? 2 years? 5 years? 10 years?) The future is so damn nebulous. Truth be told, all of our futures are nebulous but he has cancer and statistics say........
Even during our normal days, I think about him having cancer between 5 and 15 times an hour. I have one thought, "Wow nice day on the boat, I am so grateful." and then comes the next thought, "Oh my gosh, Dick has cancer, what will happen when/if we can't do this anymore..... what will I do without him?" I am not a doomsday person and I feel very grateful to have the life we have but I want it to continue for a long, long time. I guess it is about giving up control (which I don't have anyway), staying grateful, living in my faith and living one day at a time. That is what I want to do but sometimes it is sooooo hard.
How about you? Where do you go with these thoughts if you have them?
Thanks for letting me vent.

Aloha,
Kathleen

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Kathleen,

You're right- cancer forever changes a family- nothing is or will be the same again. It really sucks, to say the least! I know I go through what you talk about & I think about my cancer several times a day, even when I try not to. It's even more so for my husband. The fact that we cannot count plan a vacation for next summer without thinking will I even be able to go, what restrictions my chemo side effects and intestinal problems cause, etc, etc, etc. is so frustrating! All the "what ifs" always seem to creep in and play havoc on our brains! Of course, life is never guaranteed and no one ever knows what's in their future. But the fact is that, before cancer, we were blissfully unaware of all that could happen and made our plans without thinking the dreaded "what ifs" relating to my cancer.
I'm sad and sorry for you that you have to endure that along with Dick with his cancer, but I don't have an answer for you.
Yes, I understand what you mean about "parallel universes"- how I envy other people that don't have to think about all that we with cancer have to ponder.
I guess, knowing you are a believer, I'd just say "cling to the one who made you and loves you- nothing takes Him by surprise- He knew about all this ahead of time". Hard to get my brain around sometimes, but I believe that and it keeps me going.

Hugs to you, Kathleen-
Lisa

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

I all to well know what you are saying. I can just say enjoy all the good. It won't keep the cancer from creeping in but it makes the days much better.
I was up and down but looking at everything now the good times are so remembered. We never can say what will be in front of us in the long run. For you and all with cancer I hope I hope it will be a long run and that the good times will keep coming.

I would always try to just enjoy the little things. Just the things we laughed at and talked about. You aren't alone with the cancer thoughts.
Glad I logged on today and wish you and Dick many more good times. Paula

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

Same planet, different worlds at times

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

right words.i feel like i am in a nightmare and i cant wake up.my husband had a cook out for me before i start this whole treatment thing again.as i was sitting there watching everyone eat and talk its like i was outside my body thinking what would all these people be doing if i wasnt around.im sure in time everyone would go on with their lives.today we had a family get together at my dads after church.once again i had a strange feeling come over me.if i did not have this cancer i could be normal like everyone else,normal like i used to be.not even thinking about cancer because cancer doesnt run in my family so there was never any reason to think about it.like you i try to do normal everyday things but 90% of the time i am thinking about cancer and wondering if i am going to wake up and it will all be gone.we can only wish that would happen.my faith has strengthend and all i can do is pray to the Lord that he makes me strong to do this.i dont know how Dick has done it tell him to keep hangin in there....Godbless..johnnybegood

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Different choices generate paths to different, alternate universes. Some choices are easy to find and accept, others seem not so easy to find or implement, or even seem beyond our control. We try to compartmentalize different phases to plan ahead financially and technically.

We choose results oriented, technically based, integrative medicine - part conventional and part complementary. We are still "early" and hope to find a pathway to NEDville and the reMission. "A paper a day keeps the doctor away"? Or 2, 3 or 5?

Where we live, "conventional medicine" has components of different national origin, sort of "Honda" vs "Chrysler", but with almost no "Honda" dealerships. The heavily promoted, high margin "Chrysler" dealerships seem competitive, indifferent, or even unfriendly, but not so good at general "auto" mechanics. We love our "Honda" anyway. It has the least side effects of conventional chemos and is also more supplement friendly.

Complementary medicine has different choices in diet and supplements. Dietwise we've chosen cruciferous and colored vegetables with spicey foods with extra ginger and curcumin in a garlic and onion base, along with ketogenic diet components like olive and MCT oils. We avoid: sugar and starch; most dairy except whey powder; trans-fats, rancid fats and most PUFAs. We are currently looking for de-sugared, concentrated fruit powders and need to work on juicing with less (over)cooked food.

We choose our supplements based on reading of various literature, observation and symptomatic changes, blood tests and biomarkers, and an alternatives interested MD. Some of our supplements are for problem solving common chemo and cancer problems like mild inflammation, stomatitis, neutropenia, myelosuppression. Sure to be misunderstood and controversial, we use IV vitamin C to control histamine (debilitating and a VEGF precursor) build up, to help reverse two episodes of mild stomatitis before leucovorin was available, to accelerate wound healing, and to control pain. Enough pain control to throw the morphine bag away a day after surgery, immediately after the first IV C, as well as postsurgical wound healing to skip some days in the hospital.

Each technical improvement generates a new universe of possibilities...chip, chip, chip...

pscott1
Posts: 207
Joined: Jan 2011

Kathleen...I was thinking along these same lines this morning. When I wake up there is this brief 10-20 second period that I am normal. Then here it comes....like a runaway train...oh yeah, I have cancer. Like Lisa said, I've gone thru these last few days since I found out about the mets to my liver looking at people who are like I was, blissfully unaware of what is lurking in their bodies. Several months ago I was going along planning the future and had no cares in the world about really anything that would matter as much as this does now. Now I obsess over how much time I'm going to have with my girls, wondering if I will be here to take advantage of my annual family rituals of Black Friday shopping, whether it matters if I redo my deck or not. Yikes....it could push me over the edge if I continue down THIS road I keep thinking! I HAVE to learn to let go. Like Lisa said, He knew this was going to happen and I'm sure He knows how I will manage over time and what will be in the end. It's so hard and I know I can say I won't worry and I'll do better tomorrow but I also know I can't even guarantee that. I just want to be around for years and years to come, I want my girls to know that I love them and I would move heaven and earth to be with them for as long as I can. This is a long hard road and I just started down it, but I wish you and your husband a long and happy life together. I will keep hoping that we all will be around long enough to see a cure.

My best,
Pam

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Kathleen,

I do have those thoughts myself. I can have a super happy day, and then it seems when I'm in bed, I lie there and get horrified to think that I had cancer and wonder if it will come back. Need to focus on the happy more!

When Bill had his sudden cardiac arrest in 2000, it divided my life into Before and After. For so many years, if I would think back to earlier days, I would always think, "I was happy then." It took me a long time to truly appreciate the fact that he had been revived and just be grateful and happy, and not focus on the fact that it could happen again.

When an intruder comes into our lives, it's hard to retain our balance. Hang in there, dear. You're a strong woman. Here's a quote I saw on the Oscars tonight: "It's not the load that breaks you down. It's the way you carry it." (Lena Horne)

*hugs*
Gail

AnneCan
Posts: 3692
Joined: Oct 2009

Your thoughts are really understandable. It sounds like you are doing a good job of doing things that don't involve cancer. I need to be better at it than you are. I have let it take too much up of my world. I need to aim even more for a "parallel universe" as I have given cancer too much importance + I don't do enough other things, especially when I am in a waiting mode as I am now (waiting for CT results to see if my chemo course will change). I applaud you for working, getting out with friends + generally trying to have as normal a life as possible.

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Thank you dear friends for your thoughtful responses. You all help me have hope and deal with these 2 universes with more peace. Love to everyone.

Aloha,
Kathleen

tina dasilva's picture
tina dasilva
Posts: 644
Joined: Sep 2010

as one caregiver to a other i so feel the same way as you do.it's so hard to fight the cancer .but we do it because we love them more then anything .when or if you find away to deal with let me know . lots of hugs to you and your family Tina

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

hi kathleen,

me to about the thoughts. this post is lovelly in sense it captures the altered nature of life after cancer dx.

its simple, focus on loving and living.

your motality worries are really just reflections of the love and attachment you have for dick.

whats normal anyway ??

love and prayers,

pete

sasjourney
Posts: 395
Joined: Jul 2010

I am glad you posted this because I feel so much like you and Dick feel. I think about my cancer all the time and find when I am doing fun things with my family(vacations, celebrations, etc..) I stop and think if this will be the last time we do these things together. I admire people that can stay optimistic and positive all the time...I really wish I could but I am so heartbroken by this disease and it's effects on my family. I feel like crying sometimes just looking at my 2 daughters and wondering how long I have with them. I have a strong faith and trust in God that helps me keep going each day, but it doesn't make me forget the pain I feel inside.

I pray for you and Dick to have many, many years together to enjoy life. I pray for a cure for all of us.

Hugs,
Sara

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

Kathleen, I know what you are going through, and even though I have been NED, for almost twoy years, I still wonder when it will come back! Everyone tells me not to think like that and for the most part I keep on pressing but there are the times that you wonder, will I be here for that, for this? There is no telling, I don't think you can even rest after 5 years.

I believe we just all hope that we are doing the best we can for our bodies and helping our immune system.

Stay strong!

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

I sort of feel like I'm walking with one foot on the "normal" path in the normal universe and the other foot in the "cancer" universe. I just hope I don't lose my balance!!

I'm so happy to hear that you and Dick and the girls are having enjoyable times together where you can put the cancer away even if just for short periods. Every minute counts while you're experiencing it. :)

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