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The "new normal"

EZLiving66's picture
EZLiving66
Posts: 1285
Joined: Oct 2015

Do you ever get accustomed to this "new normal?"  It's like I'm on the Wheel of Fortune every day.  Each morning I get up and spin the wheel.  Will it be a good day, a not-so-good day or a horrible day?  Tuesday was a not-so-good day but I was at least functional.  Yesterday was a horrible day - so dizzy I could hardly walk, diarrhea so severe I couldn't even suck on a popsickle without it triggering my digestive system and the dry heaves.  On those days I know I need to hydrate but even sucking on ice makes it worse. No fluid means dehyration which means dizziness.  I never even got out of my pjs.  No shower because I can't take a chance on falling, no dog walks - just me, hanging on the walls as the rooms spin.  

Today, as I carefully stood up from bed, I felt ok.  No spinning room, no diarrhea, no nausea!  I took a couple of steps and I actually feel good - like I felt before chemo and cancer.  On these days I have to be careful not to overdo it because I feel so dang good. I stripped the beds, took a shower and washed my hair (luckily in our Florida house we have grab bars), threw a few loads of wash in, scrubbed the shower and the bathtub, scrubbed both toilets, took out some chicken from the freezer to bake for dinner tonight, filed some paperwork...... 

I have an eye appointment in a few hours.  This will be the fifth or sixth eye appointment I've had since finishing chemo a little over two years ago and every time I've had to have my prescription changed.  Sometimes my eyes get better, sometimes worse.  I thought I could wait until the end of May to see my MD eye doctor back in Wisconsin, but I can't.  I can hardly see with my glasses again (new from the end of November 2017). Thank heavens today is one of my "good" days because I almost cancelled the appointment yesterday when I was so sick.

I HATE not being able to plan ahead.  I hate making plans and then cancelling them.  Yesterday was my sewing circle and I had to miss it.  It's one of my favorite things to do in our 55+ community and I couldn't go. I also missed our HOA meeting last night! 

I wouldn't complain if most of my days were not-so-bad days or good days but it seems like there are less and less of those. 

Sorry for complaining.  I know so many of you are in a lot worse place than I am and at least I'm retired and don't have to worry about going to work or losing my job.  I have a wonderful husband who tells me to just rest on those bad days and he'll take care of everything, and he does.  And, it could be worse - I could have NO good days, right??

I love you all and you're the only ones who understand this Russian roulette of health. 

Love,

Eldri

CheeseQueen57's picture
CheeseQueen57
Posts: 756
Joined: Feb 2016

I‘m right there with you dear Eldri. I so admire through all this you sold your business, sold your house,and moved to Florida. What I would do to sell this big, old, cold house and escape to somewhere warm. But I’m afraid I’ll not have either the emotional or physical energy to do it with this uncertain future. And that was yet another of our plans which will never happen. 

We just have to take one day at a time.  Frustrating to plan, in fact I do plan and force myself through. So far I’ve been able to travel. I’m going to Dallas in a couple weeks but I always warn everybody to not have great expectations. I do get sad as they go on without me. 

We, I guess have to remind ourselves that it’s better to be here then not. When the opposite is true well...  I was thinking in bed last night if I have to have hospice I want to go to a facility. I don’t want to stay home and subject my family to that horror. Just thinkin’  

LisaPizza's picture
LisaPizza
Posts: 166
Joined: Feb 2018

Just a thought in regards to sparing your family from the experience of home hospice ... A couple years ago we took care of my dad at home for 5 weeks while he died from newly diagnosed brain cancer. He quit eating, at all, and you can imagine what happened to his body after 4 weeks of zero food. It was frankly traumatic. But it was a privilege to take care of him ourselves when he needed it most, and it would have been an additional trauma to not have him at home, truly. I am SO glad those 5 weeks were at home, no matter how difficult. 

But I totally understand your feelings. I would struggle with the same, despite knowing otherwise.

EZLiving66's picture
EZLiving66
Posts: 1285
Joined: Oct 2015

I have to agree with you, Susan.  I do not want to be home either.  My husband has stood by me for close to 50 years but I do not want to put him through that. It was so hard for ME when I was so sick from the chemo to see him feel so helpless and sad.  It made it worse for me.  

I've found that most people do not understand this concept of "some good days; some not" and think it you're on your feet, you must be good.  When my sister and her husband were here visiting it was, "Where do you want to go to today?"  She is 14 years younger than me and is in good health.  I cannot go, go, go!  We took a trip to Honeymoon Island, then a boat to Caladesi Island, then walked to the beach, walked ON the beach, walked back to the boat........  By the time we got back to our car in the parking lot I was done in.  They wanted to go out to eat; all I wanted to do was crawl into bed.  And, the next day, I was totally shot for the entire day.  I may look ok on the outside, but on the inside, not so good.

I just got back from the eye doctor.  My left eye has gotten much worse.  The optometrist I saw today said I should go see my MD eye doctor when I get back to Wisconsin.  She said she can't correct it to 20/20 but can get it to 20/40.  Well, that's better than the 20/200 it is now without glasses and the 20/100 with my current ones.  We're heading back to Wisconsin in May and I want to be able to drive if needed. And, I got a really good deal - two pairs of glasses with progressive bi-focals for $99 and that included the exam.  I get the cheapest glasses I can find because I have to get a new pair at least every six months - this time it was less than four months!!

I sure hope you're feeling better and the shunts aren't bothering you too much!!!

 

Love,

Eldri

CheeseQueen57's picture
CheeseQueen57
Posts: 756
Joined: Feb 2016

I make very clear my limitations and I’m not a hero.  So far everyone has been very accommodating. And I feel better when I’m doing something with my kids. My husband is especially protective.  

 

MAbound
Posts: 714
Joined: Jun 2016

It's good that you come here to vent. I wish I had a magic wand to make things better for you both, but alas, I don't. I still think you are both amazing ladies in how you've been coping with what this cancer has dealt you and it's an incredible gift to all of us that you keep sharing what's going on with you in spite of how hard it sometimes gets. Keep making the most of those good days and wishing you both lots of them. We celebrate them with you and hold you in our hearts when the going is not so good.

EZLiving66's picture
EZLiving66
Posts: 1285
Joined: Oct 2015

Thanks, Pat!  We "cheesy" girls have to stick together! LOL  This disease is not for wimps, that's for sure.  And, you're right, it's good to have a place to vent where people understand what you're going through.  Most people think my cancer is "over." But, this is the second day in a row where I have felt good!  I figured after yesterday when I had that huge burst of energy today would be a real downer.  I was in bed before ten last night and slept until a little after seven when I yelled to my husband to wake up; his dog was yakking.  He tumbled out of bed and crawled a few feet to our ceramic-tiled bathroom, dragging the dog.  It was pretty funny but I didn't dare laugh (ha ha).  We went out for a late lunch/early dinner, looking for a good fish fry, but ended up at Red Lobster.  That's one thing I really miss about Wisconsin - a good supper club!!

Love,

Eldri

MAbound
Posts: 714
Joined: Jun 2016

Living outside of Buffalo is almost the same as living in Wisconsin, so lot's of fish fry places here! ;-). The local news station even has a map for them all on their website. The great thing about living in a new place is that it's the perfect excuse to try new places. We found a dive near our retirement home that's been there since the '40's that has the best fish fries but zero atmosphere. We love it!  Now I figured a place like Tarpon Springs with all of that water around it has got to have better than Red Lobster so I did a little digging. I don't know where these places are in relation to where your condo is, but look into Tarpon Tavern (21 N. Safford Ave), Davidson't Dock Side (527 Andote Rd), and Captain Jack's Waterfront Bar and Grille (21 Oscar Hill). They all had 4.5-5 star reviews of their fish fries or fish and chips. It's a good enough excuse as any to go out on those good days! Happy hunting (or should I say fishing?).

MrsBerry
Posts: 102
Joined: Dec 2017

MA, I am originally from WNY, and when we travel back home, one of the first things I do is get a fish fry! 

EZLiving66's picture
EZLiving66
Posts: 1285
Joined: Oct 2015

We've gone to two of the three places you mention but it's not a real fish fry like we have back home.  Probably the best fish sandwich we had was a Yanni's in downtown Tarpon Spring.  We took the fish out of the bun - it's a huge piece - and ate that.  Problem is, we're accustomed to perch or walleye as our "fried-fish-of-choice" and I haven't seen any of that here.  I had the lobster special at Red Lobster and it was darn good with a salad, biscuits, brocolli and rice pilaf and with my portion of our $4.00 off coupon, mine was only $24.99.

I really try to avoid deep fried food since the cancer, that's why I chose the lobster, but man, one of the first things I'm going to have is a good old-fashioned perch fish fry when I get back to Wisconsin. 

I think one of the things about facing your own mortality and the fear of recurrence is that you make sure to really enjoy some things while you can.  That's why our Queen of Cheese still travels - it's what she loves to do. I love to walk the beach but the beach and the sun don't love me!! I bought a shelling cane.  It's a six foot extention pole with a little metal sieve on the end. It lets me walk the beach and reach into the ocean for shells.  I've always been sensitive to the sun but after chemo my skin is extra, extra dry and peels constantly.  I use a ton of sun screen but also bought a big umbrella, a long sleeve sun-protective cover-up, a big, wide brimmed hat, and special beach shoes since I can't feel much on the bottom of my feet. I look like a nut (picture Cam from Modern Family when they went on the eclipse boat trip - LOL) but I'm not going to let post chemo problems keep me from looking for shells!  When I get tired, I can just sit under my umbrella and rest - just thinking about going there makes me happy and it's supposed to be in the 80s this week! Cool 

Love,

Eldri

 

 

Hopeful162's picture
Hopeful162
Posts: 82
Joined: Sep 2014

During chemo, my vision (with glasses) got quite blurry. Even though I had been to the opthamologist only a month before, I went back. He said he didn't think it had anything to do with the chemo! I guess he hadn't come across it before. My eyes looked fine (he had recently dilated them) so he sent me on my way, and they did seem to improve eventually. I think some "regular" doctors don't know much about chemo side effects.

derMaus's picture
derMaus
Posts: 502
Joined: Nov 2016

I noticed my eyes getting a lot worse post-chemo and asked for an evaluation. Guess what, I have glaucoma! Not a bad case, yet, but bad enough to quality for having new lenses put in. I was scheduled for that operation around the holidays but other things got in the way... Anyway the opthamologist said that the steroids given with chemo, not the chemo itself, can cause/exacerbate them. That didn't really bother me because I'm happy to get new lenses put it, but it did remind me that too many doctors pooh pooh post-chemo body changes. 

Hopeful162's picture
Hopeful162
Posts: 82
Joined: Sep 2014

Steroid effects, huh? Makes sense, I guess. They can have very good and quite bad effects, depending. They are strong medicines.

Soup52's picture
Soup52
Posts: 867
Joined: Jan 2016

Im having one of those bad new normal weeks. Ug my continuing gastrointestinal problems. Most weeks I’m ok and of course I had no big complaint last time that I went to the oncologist and now Im not scheduled till July. Yes, I’ll probably call and try to get in, but I did try the gastro office first and have an appointment in April. Around here you never get in quickly and short of the ER there is little alternative. In the back of my mind is it the cancer again or my usual learn to live with the problems. Thank you, I just needed to vent. No easy solutions:(

EZLiving66's picture
EZLiving66
Posts: 1285
Joined: Oct 2015

I'm sorry, Soup. I know exactly what you mean about always feeling like is this just my "new normal" or is a recurrence?  As a matter-of-fact, I guess I would be really worried if all of a sudden all my post-chemo problems went away.  My oncologist's PA always told me to report any problems that got significantly worse or a new one that suddently showed up.  I take a imodium table every morning with my doctor's blessing.  It doesn't stop the diarrhea or the pain but it sure does help.  Some days it means the difference between being able to go to the grocery store or staying home near the bathroom.

I hope you GI person can figure it out!  (((Soup)))

Love,

Eldri

SF73
Posts: 237
Joined: Oct 2017

This is the scariest part of living with cancer. Every deviation from normal makes us think of cancer. So sorry to hear about your GI issues, Soup.I hope you will get an appointment soon and get some answers. And I hope it is absolutely nothing. 

I feel I can get used to the "new normal" if I can be guaranteed that whatever I am experiencing is not the return of cancer. I have been out of chemo only for 5 weeks and I already had one cancer scare. I never have ingestion problems. The only time I had bloating so much so that I looked pregnant was October and soon after they discovered the six cm tumor on my ovary and free fluid in my abdomen (recurrence of the endometrial cancer which diagnosed in late June) So two weeks ago when I experienced another GI episode I was scared senseless. MRI and CA125 test revealed it was not anything. I hope it will get easier to live with this fear. My husband was sick worried, he lost 5 pounds in a week.

The doctor thought that my GI problems might be caused by metformin and megace. I was surprised to hear that since I have been on these drugs since October but apparently since I was on chemo at the same time with these drugs the side effects may have canceled each other out. She asked me to check with her if I continue experiencing these symptoms. She has an alternative for Megace which has other side effects (joint pain and increased risk of osteoporosis. No fun) Actually, if every time I had indigestion/bloating I knew it was caused by Megace and/or Metformin I can live with it (In fact I can use it to my advantage to limit calorie intake. Because when that happens I cannot eat after lunch even if I only had a salad for lunch) but I am afraid to miss a sign of recurrence. 

Is anyone else on Metformin + Megace? What type of side effects are you experiencing?

NoniK
Posts: 46
Joined: Oct 2017

First of all...ELDRI  I am so sorry you are suffering so much. I‘d like to suggest you contact your doctor and set up an appointment for an IV, most likely one with potassium. I had all your symptoms of severe dehydration and had IVs everyday while getting treatment. The potassium helped tremendously with the dizziness, etc. and I actually felt almost human. I’m thinking once in a while might really help you have more good days. I also continued on the nausea meds well after treatments stopped. But please know you are not alone in this journey and you aren’t the only patient to have these issues.

THANK YOU ALL for sharing and venting. I’m 2 months out from my last treatment and wonder if I’ll ever function “normally” again. I have to talk myself into doing anything. I’ve been feeling so isolated and like I must be the only person with such severe issues AFTER treatment. I do count my blessings but I’m surprised by the anger I feel. I was given the impression that once treatment was over, the worst would be behind me. I want a full life and I think of all the things I want to do but I’m so tired and in such pain that I “rest” most of the day without feeling better.

Sorry for my venting but I fear my life moving forward. I’m in so much physical pain. When I use the expander I feel like I could pass out from the pain, Will that get better? Also when well meaning folks ask how I’m doing, what do I say? I’m so tired of saying I’m not doing well. 

Thanks you for listening and being out there for support.

Sincerely, Kristin

 

 

EZLiving66's picture
EZLiving66
Posts: 1285
Joined: Oct 2015

I don't want to be a big Debbie Downer but my chemo ended well over two years ago and I'm still dealing with this stuff.  I feel the same way about giving an answer to "How are you doing?"  When our son was married last August, I felt really bad about saying I couldn't do all the things the mother-of-the-bride was doing.  They were really nice and invited me along but I kept having to say no.  Even the night of the wedding, we booked a room at the hotel where the reception was held because I knew there was no way I could make it through until midnight.  Sure enough, by eight, I was so beat, I was shaking.  My husband had to help me to the room so I could lie down for an hour.  People don't understand that just because your hair grew back you are not 100% and sometimes not even 50% on a bad day!!  I thought the same as you - once this chemo is done, I'll be back to my old self.  And, in some people, that does happen or at least 90% back.  But there are a lot of us it doesn't.  Just the fatigue alone is bad enough but combined with the pain that persists, makes some days miserable.  Let me give you a hug! (((Kristen)))  I wish I could do more but know that you are not isolated.  There are plenty of us, biting the bullet every day, struggling along with you!!

Love,

Eldri

SF73
Posts: 237
Joined: Oct 2017

"just because your hair grew back you are not 100%".. So true. My hair did not grow back yet (just a bit fuzz) but I think *I* expect that I should be back to 100%. Since that's my expection, people around me expect the same. We should all give ourselves a break. 

EZLiving66, so sorry to hear about your troubles but with your attitude I am sure you will handle all these hardships. Thank you for all your insightful posts. 

EZLiving66's picture
EZLiving66
Posts: 1285
Joined: Oct 2015

Unfortunately the medical community is finding there are more side effects to Taxotere (docetaxel) than previously thought.  One is the permanent loss of hair and there is a class action lawsuit going on.  Another is damage to the nerves of the eyes and scar tissue in the tear ducts.  Ever since I started chemo back in late 2015, my eyes constantly watered and my vision was very blurry.  I was told by my oncologist's PA to wait six months before getting my eyes checked.  I go to an MD eye doctor.  So far I've had to have my prescription changed five times as of this week.  I have the beginnings of cataracts but I had that before cancer and chemo.  That has not changed significantly.  What has changed is the constant tearing and vision changes - sometimes my eyes have gotten significantly BETTER and then worse again.  I also have neuropathy in my tongue. Again, in most people it goes away when the docetaxel is stopped or soon after; mine didn't.  It always feels like I've burnt my tongue and I have to be careful when swallowing so I don't choke.  I take potassium, magnesium, a host of B vitamins, C, D and E - all per my doctor based on blood and urine tests. I had lost all my finger and toenails and while they have, for the most part, grown back, some of them are not totally connected resulting in having only half or two-thirds of a nail.  

I've started acupressure again since previously it had helped with the pain in my feet at night.  Everything I read says to be sure to tell your oncologist about any symptoms you may have.  Well, I did and the dolt didn't listen at all!  My BP right before my third chemo was 220/120.  If only I had know then what I know now!  

But, I'm alive and knock on wood, my UPSC has not returned so "new normal" it is!!

Love,

Eldri

MAbound
Posts: 714
Joined: Jun 2016

My new normal is manageable:  a neurogenic bowel that make me pay if I don't stick to a routine (makes traveling very difficult), lingering neuropathy in my feet (it's minor compared to what it used to be) and hypersensitivity to the sun that has pretty much turned me into a houseplant during summer daylight hours and zero libido. I was able to tolerate Taxotere a lot better than Taxol and had no issues with my nails ( I tend to think never having worn nail polish helped and I also kept my hands protected from sunlight and detergents during chemo) and my hair grew back just fine. It just goes to show you how varied the impacts of treatment are for all of us. We all seem to end up so differently in spite of common algorhythms for treating us. The common thread I see is the wishful thinking on the part of those around us that we come out of the experience and return to what we were before. (Eldri, I have a sister just like yours making demands to camp in our retirement home and be entertained even though we haven't even moved into it yet!) We do our best, but few of us escape the need to make adjustments of various kinds. Like the treatments themselves, it's doable (because what other choice do we have?), but I sure wish it wasn't necessary. I miss the old me more than I can say.

DM_K's picture
DM_K
Posts: 42
Joined: Mar 2018

I'm scheduled for my first surgery this Tuesday, complete hysterectomy, debulking, lymph node removel then chemo.  Hopefully the lymph nodes in my groin can be surgically removed otherwise I will have chemo first to shrink the nodes near a large ligament, then surgery.  I have prepared myself that I won't ever be the same.  I'm USC Stage 4B and the way I feel right now is the best I will ever feel again.  I questioned myself over and over, "why have chemo and possibily radiation when it's going to make me feel worse?"  I just don't want to have any regret when it's too late for treatment and then ask myself over and over, "why didn't I at least try?"  My heart goes out to those who still struggle with side effects, months/years after treatment, no one signs up for that when trying to think positive, but because women like you here, who share your stories, your REAL life stories, you are helping women like me with keeping the good and bad in perspective.  If I don't end up with debilitating side effects after treatment, that's a great thing, but if I do, I know that I'm not alone. *hugs*    

MAbound
Posts: 714
Joined: Jun 2016

Good luck on Tuesday. We'll be there with you in our hearts and prayers. 

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

It's really hard for me to define my new normal, although I'm changed from my cancer experience.  It's been 8 years, and I still get paranoid about any minor ache and pain, or just before my labs or appointments.  But it is hard for me to know what is due to aging, to radiation, to chemo, to hereditary (e.g., arthritis, bad teeth, vision, overweight) and to the fact I had cancer.  I know time seems much more valuable now, but maybe that would be the case anyway, as I experience life's lessons.  After treatment it took a couple years to get my gasto/guts working like I remember, so some healing definintely takes quite a while.  While never an athlete, I'm definitely more active than I used to be, doing a lot more walking.  My new normal is just my normal, in that I just keep plugging along.  

I think I am more aware of cancer in general, and the feelings it involves - I feel really bad when I hear about anyone who has not overcome the cancer stuggle, and wonder if everyone is getting the best resources geographically.  I know I was extremely lucky, and still am, to even be here, given my rare and aggressive cancer form.

I do know that there are great people out there, real inspirations, and this network illustrates that so well.

I embrace all of you!

EZLiving66's picture
EZLiving66
Posts: 1285
Joined: Oct 2015

It's good to hear your gastro/gut problem eventually got better.  I still deal with those problems every day.  Imodium is my new best friend but maybe, in the not-to-distant future, I'll be able to dump that old friend - LOL!!

I love to hear from long-term survivors like you. It gives me so much hope!!!

Love,

Eldri

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

Yup, it gets better.  Imodium didn't help me much, I think plain old time was my best healer.  

Keep on hoping, that is your best bet, and do know that you have a kindred spirit  :0)

Susan

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