# Cliff has cancer



## clifffaith (Oct 7, 2021)

Signed papers at 11am to sell our home for $230K more than asking price. At 3pm the urologist told us Cliff has bladder cancer. It is fairly extensive. They won't know "stage whatever" until they do surgery. Old folks home won't take us with a cancer diagnosis, so that's off. What pisses me off right now is it wasn't the CT scan they did Friday that told them his problem. It was the tube they shoved up his penis today that showed the cancer. IMHO they should have done this on August 30 when Cliff saw this new urologist because he'd peed blood the week before. We wouldn't have wasted anyone's time agonizing over a move, an apartment etc etc if we'd had the diagnosis at the end of August. Now we just have to let the events carry us along. Under the heading "it's an ill wind that blows no man/cat good",  looks like the stray kitty who adopted us two weeks ago now has a home with us here after we check to be sure s/he is not chipped.


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## bogey21 (Oct 7, 2021)

What a bummer.  Wish you both well...

George


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## Luanne (Oct 7, 2021)

I am so sorry to hear this.


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## PcflEZFlng (Oct 7, 2021)

I'm so sorry about this. I hope things turn out far better than you might expect.


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## b2bailey (Oct 7, 2021)

Faith, I can't even imagine the jolt of pain you are having upon receipt of this news. Depending upon the timing/treatment plan, I would seek a second opinion from top rated doctor in your area -- well, outside of San Pedro. Know that your TUG family will be covering you with prayers and love.


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## VacationForever (Oct 7, 2021)

I am so sorry to hear this.  I agree that the doctor should have done the check when he first went to the urologist.  I am glad that you are keeping the stray cat.  Many hugs to you.  My thoughts are with you and Cliff.


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## Gracey (Oct 7, 2021)

May both of you weather this storm


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## AnnieBets (Oct 7, 2021)

Thoughts and prayers for both of you.


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## Passepartout (Oct 7, 2021)

Aww, Faith. That sucks big time! You really have a full plate now. Wishing you and Cliff all the best in care and healing. Another opinion wouldn't hurt. You guys are in our thoughts for healing and recovery. I know you'll keep your TUG family in the loop.

Jim


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## susieq (Oct 7, 2021)

What a devastating blow this is.................. Hoping and praying for the best for both of you................


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## slip (Oct 7, 2021)

Thinking of you both. Praying for the best.


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## mdurette (Oct 7, 2021)

Wow - what a jolt I'm sure you and him are going through.    I'm so sorry for it all.    I hope when all settles, it doesn't end up being as scary as it all is to you right now at this moment.   Warm hugs and thoughts being sent your way.


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## wackymother (Oct 7, 2021)

I'm so sorry.


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## rapmarks (Oct 7, 2021)

I am flabbergasted,I don’t have words.


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## mpizza (Oct 7, 2021)

I am so sorry to hear this.

Maria


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## 1st Class (Oct 7, 2021)

Will pray for both of you for a good outcome.  

FWIW, when my FIL was diagnosed 10 years ago, we were told that bladder cancer is one of the most treatable cancers with a high survivor rate. He's had to have a couple of additional minor surgeries but is doing well at age 93.


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## SueDonJ (Oct 7, 2021)

Oh Faith, what a terrible turn for you and Cliff. I hope that figuring out your living arrangements will be easily and quickly settled, so that you can focus on Cliff's and your health. All good thoughts for you ...


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## lynne (Oct 7, 2021)

Not the results that we were all hoping for when you were well on your way to your new home.  The medical innovations are growing by the day, hoping that the cancer can be controlled and both of you can have a wonderful outcome and a very happy future wherever it takes you.


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## controller1 (Oct 7, 2021)

Thoughts and prayers for you and Cliff being sent your way.


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## jackio (Oct 7, 2021)

I'm so sorry to hear this news.  Best wishes for a good outcome.  I know 2 people - one male and one female - who have had bladder cancer for over 25 years each.  They have both had to have areas re-treated a few times but both have a great prognosis.


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## mjm1 (Oct 7, 2021)

Faith, I am sorry to hear this news. I have prayed that Jesus will watch over both of you and provide wisdom to all involved.

Best regards.

Mike


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## silentg (Oct 7, 2021)

Sorry to hear this. Sending our best wishes for you and Cliff.
What have you named the kitty?


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## clifffaith (Oct 7, 2021)

silentg said:


> Sorry to hear this. Sending our best wishes for you and Cliff.
> What have you named the kitty?



Chin, because of his/her black chin.


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## Patri (Oct 7, 2021)

Darn. So sorry to hear this. Take it one day at a time.


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## geist1223 (Oct 7, 2021)

What horrible news and horrible timing. Patti and I will add you and Cliff to our thoughts and prayers.


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## Laurie (Oct 7, 2021)

Wow, so sorry to read this diagnosis, and the timing. You both are in my thoughts.


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## MrockStar (Oct 7, 2021)

So sorry to hear this. My thoughts and prayers for both of you.


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## MULTIZ321 (Oct 7, 2021)

Will it be Robotic Surgery? Good Luck with the outcome! I join many Tuggers who are praying and pulling for you both.

Best Wishes,

Richard


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## easyrider (Oct 7, 2021)

What a bummer. Hoping its benign. Said a prayer for you two.

Bill


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## Glynda (Oct 7, 2021)

Wow! What a difference a day makes! I am so sorry!


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## Krteczech (Oct 7, 2021)

Keeping you both in my thoughts. hopefully you’ll overcome this hurdle, Cliff will receive great treatment and you both will be on your way to your new place Soon.  Stay strong!


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## clifffaith (Oct 7, 2021)

MULTIZ321 said:


> Will it be Robotic Surgery? Good Luck with the outcome! I join many Tuggers who are praying and pulling for you both.
> 
> Best Wishes,
> 
> Richard



We have no idea what sort of surgery will take place. No clue if the urologist performs the surgery, or someone else. We are totally in the dark.


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## DrQ (Oct 7, 2021)

Thoughts and prayers to you and Cliff.


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## TUGBrian (Oct 7, 2021)

Very saddend to read this


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## DaveNV (Oct 7, 2021)

Terrible news, Faith.  So sorry about this.  But at least you have some idea of cause and what to do for him.  Can you back out of the home sale, or postpone things, until you know what to do?

Dave


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## klpca (Oct 8, 2021)

I'm so sorry to hear this news Faith. It is so scary, not knowing any more right now. When my husband was diagnosed with his cancer a good friend told me that "this is the worst thing that you will have to go through, but you will get through it". Somehow it was so comforting to me to hear those words, and it turned out to be true. My husband was mid-stage 3 but here we are 5 years later, and now he just gets annual blood tests and for now they are still NED (no evidence of disease). I realize that the timing couldn't be any worse. I agree with Dave, maybe you can back out of the sale? You guys need a break.


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## amycurl (Oct 8, 2021)

That’s just too much…I’m so sorry to hear this. Holding you both in The Light.


Sent from my iPad using Tapatalk


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## mentalbreak (Oct 8, 2021)

So very sorry for the news and the order of events. I will keep you both in my prayers.


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## Sandi Bo (Oct 8, 2021)

So very sorry to hear of Cliff's diagnosis. Keeping you in my thoughts and prayers as you work through this. You've been through so much, stay strong!


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## Brett (Oct 8, 2021)

I'm also sorry to hear about that unexpected diagnosis - hope your husband gets the best care and recovers


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## nerodog (Oct 8, 2021)

I am sending you positive  thoughts and live from across the pond.  It's a shock for sure and I agree with other posters to seek as much info as you can gather. My heartfelt  prayers. ♥


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## pedro47 (Oct 8, 2021)

My prayers and thoughts are with Cliff and you.


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## joyzilli (Oct 8, 2021)

So sorry to hear this.  Hoping that all goes well


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## Free2Roam (Oct 8, 2021)

Sending thoughts and prayers also. 

Stand strong for Cliff at this tough time... and let others stand strong for you. Life's ups and downs...


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## Sugarcubesea (Oct 8, 2021)

Faith, I'm so very sorry to hear this devastating news...My heart just breaks for you


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## presley (Oct 8, 2021)

I'm very sorry to hear this. My dad had bladder cancer. I know you were already in a whirlwind before this diagnosis. I pray for peace and clear decisions moving forward.


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## joestein (Oct 8, 2021)

So sorry for you.  I hope Cliff has a successful surgery and speedy recovery.


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## Iggyearl (Oct 8, 2021)

Faith, maybe you were named for this exact reason.  I am just 2 years removed from cancer surgery.  I am fine. Believe in the positive. Be Cliff's cheerleader.  You might want to study the treatments available, so you can quiz the doctors. It sucks, but there is a whole team of cheerleaders on this website who are rooting for you and Cliff.  Best of luck to both of you.


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## rickandcindy23 (Oct 8, 2021)

So sorry, Faith, for what you are going through.  I will keep you in my prayers for healing.


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## CalGalTraveler (Oct 8, 2021)

So sorry to hear this Faith. What you thought was going to be a happy day and you got hit by a Mack truck instead. Hang in there. Although it is not what you expected, many cancer patients are surviving decades with the latest treatments. My thoughts are with you and Cliff.


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## headoflife (Oct 8, 2021)

You are both in my thoughts. I realize it is easy to say, but hard to do, but try to keep breathing and wait to hear more from the doctor. I'm also a big advocate for second opinions, from the best in the field you can possibly access.


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## Dori (Oct 8, 2021)

Thinking of you both during this time. Take heart that there have been huge improvements and procedures in this field. A dear friend of mine not only beat this, but lives a totally full life. Best of luck.

Dori


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## TheHolleys87 (Oct 8, 2021)

I too am very sorry to hear this. Prayers for both of you.


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## Glenn2 (Oct 8, 2021)

So sorry to hear this awful news.


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## pittle (Oct 8, 2021)

I'm sorry to hear this.  You have been doing so much planning and now you have to look for new options while going through treatment for Cliff. It is amazing what they can do with various cancers now.  Hugs to you!


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## mkeller7281 (Oct 8, 2021)

So sorry to hear.  Hoping for the best.


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## TravelTime (Oct 8, 2021)

So sorry to hear this. I wish you and Cliff the best.


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## LisaH (Oct 8, 2021)

I’ll keep you and Cliff in my thoughts and wish for the best outcomes…


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## GrayFal (Oct 8, 2021)

Hoping for the best outcome.


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## Jodyv (Oct 8, 2021)

Yale Medicine has a good article about the treatment of urologic cancers.  (Wish i knew how to copy and paste...) It looks like bladder cancer is treatable.  There are lots of oncologists in the Los Angeles area, lucky for you to live in an area with teaching hospitals and newest technologies.  Looks like you have lots of good support.  We're all wishing you the best.


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## stmartinfan (Oct 8, 2021)

So sorry to hear that you've hit this giant bump in the road in your plans for the next phase of your life. From your posts, it’s clear you’re a strong, resourceful person who will find the best way through this challenge too.  Wishing you success in finding the best treatment plan for Cliff.  I’m from a family of cancer survivors so know there can be positive outcomes despite the diagnosis.


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## spirit1 (Oct 8, 2021)

So sorry to hear of your news today.
My husband was diagnosed with bladder cancer in March of this year.  It was not found on the CT scan either but with the scope up the urethra during an MRI.

He has had the surgery and some follow-up chemo ( to boost the immune system)  It was 5 visits for about half an hour each to have a weakened virus inserted to coat the bladder.  Not a difficult procedure.

He has had a follow-up check-up and all is good.  3 more of the virus treatments and another check-up in 6 months. We will be doing this for two years apparently.

One of his friends had the same treatment 10 years ago and is doing well.  We are hoping for the same results.
I also have heard that bladder cancer has a good recovery rate.  It sounds like Cliff's was caught quickly after symptoms were noticed so that is something positive.
Wishing you the best.  Today's treatments are excellent and we feel fortunate that we are getting good care.


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## melissy123 (Oct 8, 2021)

sending prayers and good thoughts your way. Hoping for the best outcome.


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## Bailey#1 (Oct 8, 2021)

Add me to the list of people hoping and wishing you the best outcome.


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## tiel (Oct 8, 2021)

So sorry this has happened to you both.   This is the hardest time, not knowing what’s coming next.  We have no personal, familial, or friend experiences with this disease, so we can’t offer any information.  But a good many other TUGgers have offered their experiences, and it sounds like there is a good possibility for a positive outcome. We wish that for you both.  Take care.


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## Passepartout (Oct 8, 2021)

Reading the above posts, bladder cancer sounds to be quite treatable when found at the first signs. We have fingers, arms and eyes crossed for good news. Hopefully the 'old folks home' will welcome you when the cancer is excised! 

Best wishes, Faith and Cliff! Oh, and the new kitty.

Jim


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## JudyH (Oct 8, 2021)

So sorry to read about this. I agree with you he should have had the look-see with the scope immediately. That’s what I had within a week of a sudden episode of bladder bleeding. I have experience with close family with bladder cancer. I am wishing you the best. Find a urologist who works closely
with an oncologist for the best team approach. Dont leave it to Cliff to make decisions alone.


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## JanT (Oct 8, 2021)

I am so very sorry to hear this.  I try to keep focused on "God has a plan" but it can be so hard to do.  Sending prayers for you and Cliff.


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## DonnaD (Oct 9, 2021)

clifffaith said:


> Signed papers at 11am to sell our home for $230K more than asking price. At 3pm the urologist told us Cliff has bladder cancer. It is fairly extensive. They won't know "stage whatever" until they do surgery. Old folks home won't take us with a cancer diagnosis, so that's off. What pisses me off right now is it wasn't the scan they did Friday that told them his problem. It was the tube they shoved up his penis today that showed the cancer. IMHO they should have done this on August 30 when Cliff saw this new urologist because he'd peed blood the week before. We wouldn't have wasted anyone's time agonizing over a move, an apartment etc etc if we'd had the diagnosis at the end of August. Now we just have to let the events carry us along. Under the heading "it's an ill wind that blows no man/cat good",  looks like the stray kitty who adopted us two weeks ago now has a home with us here after we check to be sure s/he is not chipped.



My mother had bladder cancer and they did surgery to remove the growths via urethra.  The growths that were like mushrooms inside the bladder. They coterized the area where tumors had been and then started immuno-therapy by instilling weakened TB cells into bladder once a week for like 6 or 8 weeks. It caused her body to react to a bladder infection and her body fought off the infection or fast growing cells.  She was given the medicine that stops the pain of a bladder infection. After 6 months they rechecked her and found smaller tumors starting which were less aggressive. They were removed and coterized and the treatment was repeated for another series.  She lived another 8 to 10 years and died of something else at 91.  If the wall of bladder has not been invaded, it is very treatable but not  curable...or it was not at time of her case which was 20--25 years ago.


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## b2bailey (Oct 9, 2021)

Faith, after reading what has been shared by others, I have a much more hopeful outlook for Cliff. Hope you do as well. I didn't see a reply to the question about whether the sale of your home is final. If it is, I am wondering if perhaps this is a good thing, depending upon where Cliff will receive treatment.   It could be that a furnished apartment near the hospital will suit your needs for the next six months. (None of us would want to be driving long distances in LA traffic, for any reason.)


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## lockewong (Oct 9, 2021)

Faith, I am sure you are reeling with the events and the news about Cliff.  In reading the posts, it seems that bladder cancer is treatable.  It is unfortunate that the new urologist did not diagnose this sooner.  In that light, you can request a second opinion for this very reason.  If your health care provider balks, go to LA anyway and find a top-notch urologist for a consultation.  If you have the surgery in LA, there is often medical housing near the hospital for the convenience of the patient and the recovery.  I know that Fred Hutchinson in Seattle had that for a friend who had to travel there for her surgery and follow-up.  Also, get the hospital social worker to tell you what is happening.  They are the ones that give you information and follow-up advice and resources when often, the families are in shock.  Good luck and my thoughts are with you and Cliff.


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## isisdave (Oct 9, 2021)

Linda and I were shocked by your news, and we're sending Cliff and you our best wishes. You're in our prayers too.


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## DrQ (Oct 9, 2021)

Passepartout said:


> Reading the above posts, bladder cancer sounds to be quite treatable when found at the first signs. We have fingers, arms and eyes crossed for good news. Hopefully the 'old folks home' will welcome you when the cancer is excised!
> 
> Best wishes, Faith and Cliff! Oh, and the new kitty.
> 
> Jim


Ditto, I hope they caught it early.


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## clifffaith (Oct 9, 2021)

The old folks home (Continuing Care Retirement Community) has stepped forward saying we can still move in. Cliff will not be eligible for any of the things they would normally provide (memory care, assisted living, skilled nursing) until he is cancer free for one year. In the meantime those things are available at market rate on site as needed for him. And any after care/rehab living that insurance would normally pay for can be provided on site. Thursday we will keep the "draw the clock/remember five words" appointment, and go over entry documents. Our home is being inspected today -- I told them we'd reimburse for the inspection if we do end up backing out. Cliff is adamant about moving and getting me settled before my back issues get worse. My mother is beside herself with this decision. With a 30 day escrow (and a month more rent free to get ourselves out) it is entirely possible we can be moved before surgery is scheduled, and he'll work with Aetna to get our coverage changed to Orange County which needed to be done anyway. Surgery will hopefully be where ever we are living at the time but we'll deal with it either way. Trying to get moved during this time will be stressful, but I am hoping the support we'll get in the new community will make it worthwhile. A good friend has counseled us that my job is to get us moved, Cliff's job is to work with the doctors and insurance, and the extra $230K's job is to hire people to help.


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## Breezy52 (Oct 9, 2021)

Don't give up hope, my sister just entered palliative care, 24 years after a late diagnosis, you've got a lot of prayers coming both your ways ~


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## geoand (Oct 9, 2021)

I am so sorry.


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## rapmarks (Oct 9, 2021)

Happy to hear from you, Faith, and glad the old folks home is cooperative. Make sure you take advantage of help, don’t do everything yourself.


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## Passepartout (Oct 9, 2021)

Faith, I saw this and thought of you. Sometimes a smile helps. Stone(d) cat???


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## bogey21 (Oct 9, 2021)

clifffaith said:


> A good friend has counseled us that my job is to get us moved, Cliff's job is to work with the doctors and insurance, and the extra $230K's job is to hire people to help.



Concur with your friends counsel...

George

PS A number of Residents at my CCRC hire Private Caregivers while still in Independent Living.  It is  not uncommon.  The Caregivers  have to be approved by my CCRC and are paid by the hour.  The number of hours they work is at the discretion of the Resident...


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## Paumavista (Oct 9, 2021)

So sorry.....I know how scary the "C" word is....no matter how you feel, or what else is going on in your life (and you've got a lot on your plate).  I am 7 years past my diagnosis & treatment (not for bladder cancer).....but it sounds like others here have fought this specific battle with good results....I hope good news is on the way & in your future.  Mean time.....lots of cyber HUGS from your TUG family.


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## amycurl (Oct 10, 2021)

I am glad to hear that the move can go forward. Remember that asking for help is a gift you give other people. And the extra quarter mil can pay for a lot of convenience…with $, almost all things are possible/easier.


Sent from my iPad using Tapatalk


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## heathpack (Oct 10, 2021)

@clifffaith, sorry to hear you are going through this.  Glad you can move into the CCRC still, albeit with limitations/restrictions for Cliff.  I guess the buyer of your house is prepaying for whatever he needs that is not covered by the CCRC….

My Mom moved into a CCRC in April.  She’s 3000 miles away from me, and I’m the only surviving sibling.  She decided to have knee replacement surgery and it has been great. Two days post op, she was discharged from the University’s hospital to the CCRC’s nursing unit, then, two weeks after that, to her apartment.  PT comes to her, the head of nursing comes to her to organize care, they send in a nurses aid to assist with showering, and they deliver her meals to her room.  Every day one of her fellow residents comes to visit her, brings her mail, fixes her breakfast, etc.  I was visiting a little while post op and I was very impressed.

Im not sure if all that is typical, or if she picked a particularly good place.  But so far my experience is that being in a CCRC helps a lot when you’re contending with a medical issue.

Hopefully the move goes smoothly!


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## amycurl (Oct 10, 2021)

Yes, I agree that having the support of the CCRC (even with the limitations that they stipulated) will be good for both you and Cliff. Plus, just not having to worry/deal with the idea of an "interim" move. Once and done! It also sounds like the move to the CCRC is something that Cliff is excited about, and if it gives him something else to focus on, mores the better. *big hugs*


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## MULTIZ321 (Oct 16, 2021)

Stages of Bladder Cancer: What You Need to Know.










						Stages of Bladder Cancer: What You Need to Know
					

Bladder cancer staging helps your healthcare professional determine your prognosis and the best treatment options.




					www.verywellhealth.com
				



.


Richard


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## DaveNV (Oct 16, 2021)

Thinking only good things for you both, Faith.  Hope Cliff's treatments are successful, so you two can look forward to many more years of driving each other crazy.  

Hang in there.

Dave


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## clifffaith (Oct 20, 2021)

Tomorrow will be two weeks since Cliff's diagnosis and we have heard nothing from his doctor or insurance. He did call Aetna on Friday, waited on hold 45min, and was told that paperwork marked "routine" had been submitted and that the hospital has 30 days to respond to routine paperwork.

Monday I was at an appointment with my pain doctor who wanted to know where Cliff was (home waiting for the phone company who no longer give "morning" or "afternoon" appointments, just "Monday" appointments) and I mentioned his bladder cancer. Guess whose brother in law is a urologist oncologist at City of Hope?! By the end of Monday Cliff had an appointment scheduled for Oct 28, yesterday they did a phone interview with him and emailed over a ton of paperwork, this morning my doctor texted his relative to watch for Cliff on the 28th and I got the impression he was going on the record as wanting medical input back as the "referring physician", and by the time we returned home from my epidural appt City of Hope was on the phone to help walk Cliff through the doc-u-sign forms which had been included in Tuesday's email but that Cliff had missed.

So I feel like we are in good hands now. Just need to determine if insurance company will pick up any of the out of network charges, and what those charges will be. Won't deal with that until we have a better idea of the health issues.


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## controller1 (Oct 20, 2021)

clifffaith said:


> Tomorrow will be two weeks since Cliff's diagnosis and we have heard nothing from his doctor or insurance. He did call Aetna on Friday, waited on hold 45min, and was told that paperwork marked "routine" had been submitted and that the hospital has 30 days to respond to routine paperwork.
> 
> Monday I was at an appointment with my pain doctor who wanted to know where Cliff was (home waiting for the phone company who no longer give "morning" or "afternoon" appointments, just "Monday" appointments) and I mentioned his bladder cancer. Guess whose brother in law is a urologist oncologist at City of Hope?! By the end of Monday Cliff had an appointment scheduled for Oct 28, yesterday they did a phone interview with him and emailed over a ton of paperwork, this morning my doctor texted his relative to watch for Cliff on the 28th and I got the impression he was going on the record as wanting medical input back as the "referring physician", and by the time we returned home from my epidural appt City of Hope was on the phone to help walk Cliff through the doc-u-sign forms which had been included in Tuesday's email but that Cliff had missed.



It's bad when even in medical issues it is who you know. But I'm happy for you and Cliff on this.


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## Sugarcubesea (Oct 20, 2021)

clifffaith said:


> The old folks home (Continuing Care Retirement Community) has stepped forward saying we can still move in. Cliff will not be eligible for any of the things they would normally provide (memory care, assisted living, skilled nursing) until he is cancer free for one year. In the meantime those things are available at market rate on site as needed for him. And any after care/rehab living that insurance would normally pay for can be provided on site. Thursday we will keep the "draw the clock/remember five words" appointment, and go over entry documents. Our home is being inspected today -- I told them we'd reimburse for the inspection if we do end up backing out. Cliff is adamant about moving and getting me settled before my back issues get worse. My mother is beside herself with this decision. With a 30 day escrow (and a month more rent free to get ourselves out) it is entirely possible we can be moved before surgery is scheduled, and he'll work with Aetna to get our coverage changed to Orange County which needed to be done anyway. Surgery will hopefully be where ever we are living at the time but we'll deal with it either way. Trying to get moved during this time will be stressful, but I am hoping the support we'll get in the new community will make it worthwhile. A good friend has counseled us that my job is to get us moved, Cliff's job is to work with the doctors and insurance, and the extra $230K's job is to hire people to help.



Faith, I love your good friends advice, I know it will be stressful but I think it will be a good thing to move into the Continuing Care Retirement Community) as you've been working toward that for so long now... Your in my thoughts and prayers daily and I wish you much love in these next few months...


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## Paumavista (Oct 20, 2021)

clifffaith said:


> Guess whose brother in law is a urologist oncologist at City of Hope?! By the end of Monday Cliff had an appointment scheduled for Oct 28, yesterday they did a phone interview with him and emailed over a ton of paperwork, this morning my doctor texted his relative to watch for Cliff on the 28th and I got the impression he was going on the record as wanting medical input back as the "referring physician", and by the time we returned home from my epidural appt City of Hope was on the phone to help walk Cliff through the doc-u-sign forms which had been included in Tuesday's email but that Cliff had missed.
> 
> So I feel like we are in good hands now. Just need to determine if insurance company will pick up any of the out of network charges, and what those charges will be. Won't deal with that until we have a better idea of the health issues.


This is a wonderful "good sign"......"stars aligning"......some "prayers being answered".....Hope the good vibes keep coming; keep a good attitude & let this be a lesson to reach out....there are people you may not even realize who can help, offer assistance, provide information and pray......Collect your "village of support" they/we will be there for you both!


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## b2bailey (Oct 21, 2021)

clifffaith said:


> Tomorrow will be two weeks since Cliff's diagnosis and we have heard nothing from his doctor or insurance. He did call Aetna on Friday, waited on hold 45min, and was told that paperwork marked "routine" had been submitted and that the hospital has 30 days to respond to routine paperwork.
> 
> Monday I was at an appointment with my pain doctor who wanted to know where Cliff was (home waiting for the phone company who no longer give "morning" or "afternoon" appointments, just "Monday" appointments) and I mentioned his bladder cancer. Guess whose brother in law is a urologist oncologist at City of Hope?! By the end of Monday Cliff had an appointment scheduled for Oct 28, yesterday they did a phone interview with him and emailed over a ton of paperwork, this morning my doctor texted his relative to watch for Cliff on the 28th and I got the impression he was going on the record as wanting medical input back as the "referring physician", and by the time we returned home from my epidural appt City of Hope was on the phone to help walk Cliff through the doc-u-sign forms which had been included in Tuesday's email but that Cliff had missed.
> 
> So I feel like we are in good hands now. Just need to determine if insurance company will pick up any of the out of network charges, and what those charges will be. Won't deal with that until we have a better idea of the health issues.


Having just met with my wonderful Medicare agent, I'm hoping you have someone like him. If not, PM me and I will give you his number. Because you are relicating, Cliff is eligible to change to a Supplement plan that will cover City of Hope.


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## VacationForever (Oct 21, 2021)

b2bailey said:


> Having just met with my wonderful Medicare agent, I'm hoping you have someone like him. If not, PM me and I will give you his number. Because you are relicating, Cliff is eligible to change to a Supplement plan that will cover City of Hope.


The issue is that once you have a serious illness and not already on Supplement, once past age of 67, no insurer will touch you.  Worth a try but don't hold out too much hope.


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## b2bailey (Oct 21, 2021)

Yes, that is correct.
However, I was told that a 'relocation' request changes those rules.


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## Glynda (Oct 21, 2021)

clifffaith said:


> Tomorrow will be two weeks since Cliff's diagnosis and we have heard nothing from his doctor or insurance. He did call Aetna on Friday, waited on hold 45min, and was told that paperwork marked "routine" had been submitted and that the hospital has 30 days to respond to routine paperwork.
> 
> Monday I was at an appointment with my pain doctor who wanted to know where Cliff was (home waiting for the phone company who no longer give "morning" or "afternoon" appointments, just "Monday" appointments) and I mentioned his bladder cancer. Guess whose brother in law is a urologist oncologist at City of Hope?! By the end of Monday Cliff had an appointment scheduled for Oct 28, yesterday they did a phone interview with him and emailed over a ton of paperwork, this morning my doctor texted his relative to watch for Cliff on the 28th and I got the impression he was going on the record as wanting medical input back as the "referring physician", and by the time we returned home from my epidural appt City of Hope was on the phone to help walk Cliff through the doc-u-sign forms which had been included in Tuesday's email but that Cliff had missed.
> 
> So I feel like we are in good hands now. Just need to determine if insurance company will pick up any of the out of network charges, and what those charges will be. Won't deal with that until we have a better idea of the health issues.



That's fantastic Faith! A bit sad that sometimes it gets down to who you know to get something done! Wishing the best for you both and will be watching for updates.


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## VacationForever (Oct 21, 2021)

b2bailey said:


> Yes, that is correct.
> However, I was told that a 'relocation' request changes those rules.


It did not for us when we moved from CA to NV.  My husband applied to a Supplement plan here as he had Kaiser in CA.  He was subject to underwriting and denied acceptance into Tier 1 pricing even though he had nothing serious.  They did offer him Tier 2/3 pricing.


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## topmom101 (Oct 25, 2021)

I am sorry for what you are going thru, Faith. You and your husband will be included in my prayers tonight.


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## clifffaith (Oct 28, 2021)

Excellent visit with the doctor at City of Hope this afternoon. He spent 40 minutes discussing our options and answering our questions. He will do a "blue light procedure" where they use fluorescent dye inside the bladder, and it allows them to see and remove even the smallest specks of cancer. Then the bladder is "painted" with chemotherapy drugs. Apparently there are no side effects from the chemo because it doesn't enter the blood stream. They won't know the extent or stage of the cancer until they do the surgery; aiming to have this done in 3-4 weeks. 

We have approached our buyer to see if we can rent back a month in our old home in addition to the 30 days they are giving us, because it is closer for us to travel to City of Hope from here. Escrow is supposed to close about Nov 10. The finance department at CoH will get with us to discuss how we might get our Aetna HMO to pick up some of the costs, and to discuss exactly what those costs are. We'll still take possession (meaning shell out the cash!) of our new apartment on Nov 7th so we can change the paint color, put electricity behind the toilets so we can install "butt washers" and do some closet modifications.  And we'll start moving dishes, linens and other small stuff while Cliff is still up to it.

Cliff got pulled over on the freeway on the way home. Highway Patrol officer said he had pulled into the carpool lane in an unsafe manner and someone behind him had to slam on his brakes. I don't know if it was because we put on masks when he approached us, because he saw our hospital wristbands, or maybe he was just having a good day -- let us go without a ticket and just a warning to be more careful next time!


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## Glynda (Oct 29, 2021)

That's good news! My brother-in-law had bladder cancer and he too had the same type of chemo with no side effects. Hope everything falls in place for you with the house, insurance and Cliff's surgery and treatment.


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## Patri (Oct 29, 2021)

It is amazing what medicine can do these days. I hope Cliff does not experience discomfort with any treatment.


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## Paumavista (Oct 29, 2021)

Glad to hear you had a good Dr visit.  Hopefully the good news will continue......remember there are lots of friends praying..........


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## Sugarcubesea (Oct 29, 2021)

Faith,  I'm so happy to hear that you had a good doctor visit with Cliff. I'm so happy that you get to move into your new place before you have to leave your current home...take good care...


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## clifffaith (Nov 13, 2021)

Since it appeared that nothing was happening any time soon with Cliff's impending surgery, I decided our best course of action was to get moved sooner rather than later. We took possession of our new abode on Thursday, movers are scheduled on Nov 22nd, and we have started the daily treks with carloads of items we don't want the movers moving. Of course Cliff woke up Thursday morning with orders to put the movers off so he can paint. On hearing that bit of news Reata Glen put "we have given you tons of business" pressure on the painters who had not called me back, and they start Monday. That means slowing down the bringing of anything that can't be put away in the kitchen or stored temporarily on the balcony, because even closets are being painted to get rid of the weird gray/beige walls. We have met many nice folks in the elevators and in the dining room, so are looking forward to getting settled. Asked for special dispensation to bring the newly acquired stray kitty with us, but don't expect it to be granted.

Yesterday we tried and failed to get on the road by 10am. At 10:15, five weeks and one day after the cancer diagnosis, the urologist's office called to say they had approval from Cliff's Aetna Medicare Advantage plan. "Or did you plan on using City of Hope?" He sidestepped that question twice, saying he'd wanted a second opinion. So he is supposed to get a call back, presumably with a surgery date another two months in the future. And of course he didn't listen to CoH Doctor, or to me reminding him multiple times, and he went ahead and changed his insurance from Aetna HMO to Aetna PPO. So I'm sure there will be a delay as the two sides of Aetna fight over whether the insurer of record at diagnosis or the new branch of insurance will pay for it. And City of Hope has been surprisingly silent after all the excellent help before his appointment and during his on site consultation. My mother has been on me to follow up. No, my job is to get us moved, Cliff's job is to follow up. December 1st, after we are moved, after we have stopped running back and forth between San Pedro and San Juan Capistrano (65 minutes going, closer to 90 starting home at 3:45pm to get home before too dark), after some of the boxes are unpacked, then I'll take charge.


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## Breezy52 (Nov 13, 2021)

I’m so sorry that now there is a battle of insurances going  on (and that you couldn’t head that off despite your efforts ).  But look at all you’ve gotten done~ moving is brutal at the best of times.  Hopes & hugs headed your families way~


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## clifffaith (Nov 17, 2021)

Finally have a surgery date. December 2nd at 3:30 in the afternoon, with the original doctor, at the hospital just down the street from my mother. We'll stay overnight afterwards at a hotel, rather than make the trip home that night. Cats will be ok, albeit pissed off, alone for the evening and part of the next day. But if I can't find a back up feeder "just in case" during the very busy week and a half we'll be moved in before surgery, I'll board them.


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## slip (Nov 17, 2021)

clifffaith said:


> Finally have a surgery date. December 2nd at 3:30 in the afternoon, with the original doctor, at the hospital just down the street from my mother. We'll stay overnight afterwards at a hotel, rather than make the trip home that night. Cats will be ok, albeit pissed off, alone for the evening and part of the next day. But if I can't find a back up feeder "just in case" during the very busy week and a half we'll be moved in before surgery, I'll board them.



Getting a date is a good step forward.


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## clifffaith (Dec 3, 2021)

Cliff had surgery today. They had an emergency so it was pushed back to 5pm. It made for a long day since we had to leave home at 8am to be sure to make a 9:30 COVID test. He is resting now in our room at Howard Johnson’s, but is uncomfortable with the catheter and feels like he has to pee. He ate a cookie and had a few sips of cranberry juice, but didn’t feel like eating anything more. I am so afraid he’ll have an issue with the catheter and that I won’t be up to helping him because of my own squeamishness. Doctor is hopeful he got it all. I worry it has already spread because he has become increasingly memory impaired over the last few weeks. Kept telling people he would be staying in the hospital overnight, in spite of me repeatedly telling him we were staying a hotel.


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## DaveNV (Dec 3, 2021)

clifffaith said:


> Cliff had surgery today. They had an emergency so it was pushed back to 5pm. It made for a long day since we had to leave home at 8am to be sure to make a 9:30 COVID test. He is resting now in our room at Howard Johnson’s, but is uncomfortable with the catheter and feels like he has to pee. He ate a cookie and had a few sips of cranberry juice, but didn’t feel like eating anything more. I am so afraid he’ll have an issue with the catheter and that I won’t be up to helping him because of my own squeamishness. Doctor is hopeful he got it all. I worry it has already spread because he has become increasingly memory impaired over the last few weeks. Kept telling people he would be staying in the hospital overnight, in spite of me repeatedly telling him we were staying a hotel.



The hard part is over, Faith.  Tomorrow he'll be in better condition, and you can assess him then.  Get some rest, and try not to worry.

Dave


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## Jodyv (Dec 3, 2021)

Wishing Cliff a speedy recovery.  It's very common for stressed elders to have memory problems.  You guys must be REALLY stressed.  A move and dealing with cancer all at the same time?  It's pretty stressful.  Maybe things will start to ease up now that the surgery is over.  Hope so.


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## slip (Dec 3, 2021)

Yes, try to get some rest. One day at a time now.


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## Timeshare Von (Dec 3, 2021)

Just catching up with so much here on TUG.  Faith . . . you and Cliff are in my thoughts and prayers.


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## TheHolleys87 (Dec 3, 2021)

Hope he is better today and that the doctor did get it all. Prayers for both of you.


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## clifffaith (Dec 3, 2021)

Not a good idea to send a man who already had memory issues, and then got knocked out for surgery, and on top of all that was an engineer for 60 years, home with a contraption strapped to his leg to help him pee. By the time he accepted my offer to come into the bathroom, we had a scene from Bate’s Motel in our Howard Johnson room. He hadn’t understood whatever instructions they gave him and had the bag partially disassembled with blood and pee everywhere before I stepped in to point out the drainage valve (man’s field of expertise was valves). Took us an hour of googling to sort of get it back together. Just now while typing I heard sounds of puzzlement and again he couldn’t operate the valve, this time because a leg strap was partially concealing the “switch”. Goal now is to get on the road home to the cats and some medical personnel who can help with the proper handling of the pee bag.


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## SmithOp (Dec 3, 2021)

I’m feeling for you Faith, I went through the same thing with my father and the leg bag. He was constantly fiddling with it, the straps slipped, the bag covered the vavle at the bottom, etc. 

Hang in there, you will get more experienced, for him it will be like the first time every time. My father had a stroke that brought on the dementia.


Sent from my iPad using Tapatalk Pro


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## klpca (Dec 3, 2021)

Sorry that you are going through this. It is traumatic for everyone. Our lives were turned upside down for the first two weeks after my husband's cancer surgery. He was younger than Cliff so there were no memory issues, but he was in so much pain and so uncomfortable that he wasn't himself at all. It is very disorienting to have everything suddenly be different than it has been for your entire life (i.e having a catheter), so Cliff probably will be in a different state of mind until things get more "normal".  Don't hesitate to take others up on their offers of help. A friend brought over a huge pot of Navy Bean soup and I was so grateful that I almost cried.

Funny story - our kids took turns visiting after my husband had his surgery. Our youngest was working at a camp for 6th graders (sleep-away outdoor education camp so there was a new group of kids every Monday). And parents absolutely send their kids to camp with lice. All.the.time. So our youngest came home to stay over the weekend. She hung out on the couch in the family room to keep dad company. She left on Sunday then called on Monday to tell me that she *may* have lice (or may not) but just to be careful I should buy some spray stuff and treat the sofa in the family room and her bedroom. So in addition to washing bedding that was getting soiled every day because of my husbands healing wounds and the leaky catheter, I now had to wash the bedding in the other room, clean the sofa, then treat everything. I was pretty sure that I was the only person who ever went to Target and bought only lice treatment spray and Depends. I was feeling pretty darn sorry for myself and may have shed a few tears on the drive home. I can laugh about it now, but it was definitely the low point of those two weeks. And it turned out that my daughter didn't have lice after all. All of that work for nothing, lol.


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## MULTIZ321 (Dec 3, 2021)

clifffaith said:


> Not a good idea to send a man who already had memory issues, and then got knocked out for surgery, and on top of all that was an engineer for 60 years, home with a contraption strapped to his leg to help him pee. By the time he accepted my offer to come into the bathroom, we had a scene from Bate’s Motel in our Howard Johnson room. He hadn’t understood whatever instructions they gave him and had the bag partially disassembled with blood and pee everywhere before I stepped in to point out the drainage valve (man’s field of expertise was valves). Took us an hour of googling to sort of get it back together. Just now while typing I heard sounds of puzzlement and again he couldn’t operate the valve, this time because a leg strap was partially concealing the “switch”. Goal now is to get on the road home to the cats and some medical personnel who can help with the proper handling of the pee bag.


Hi Faith,

I had Robotic Prostate Surgery in February of this year. Prior to the Prostate Surgery I had been catheterized with a leg bag since May, 2020 that was changed monthly and I continued to be catheterized for about a month after the Robotic Prostate Surgery.  I discovered that there are two primary catheter leg bags that are commonly used - one type has a twist valve to drain the bag and then reverse the twist to close off the drain; the other type of catheter leg bag has a Flip-Flo Valve that in my experience was much easier to use to drain the bag and then reverse the flip to close the valve. I used both types of bags and if the straps were adjusted properly, the straps did not interfere with the valves on either type bag.

I think Cliff would do better with the Flip-Flo bag.  Here's a link describing what I'm talking about.  Click on the pictures to enlarge.

Good Luck and Best Wishes for a quick recovery.

Bard Dispoz A Bag - 4 Urinary Leg Bags with Flip-Flo Valve and 1 Pair of Fabric Straps|Express Medical Supply (exmed.net) 


Richard


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## clifffaith (Dec 3, 2021)

MULTIZ321 said:


> Hi Faith,
> 
> I had Robotic Prostate Surgery in February of this year. Prior to the Prostate Surgery I had been catheterized with a leg bag since May, 2020 that was changed monthly and I continued to be catheterized for about a month after the Robotic Prostate Surgery.  I discovered that there are two primary catheter leg bags that are commonly used - one type has a twist valve to drain the bag and then reverse the twist to close off the drain; the other type of catheter leg bag has a Flip-Flo Valve that in my experience was much easier to use to drain the bag and then reverse the flip to close the valve. I used both types of bags and if the straps were adjusted properly, the straps did not interfere with the valves on either type bag.
> 
> ...



One of the distressing things for me is that “Mr Engineer” couldn’t figure out the Flip-Flo valve. Then I had to repeatedly point out the “up” arrow on the bag. Thank you for the link. A male nurse did a house call this afternoon, and they just did a phone check on him. He frets about not peeing much, but has to be cajoled to drink water or juice. His doctor was completely incognito all day, and we never could get whatever prescription he is supposed to have. Totally unacceptable. Maybe this is ho hum routine for them, but it is scary and stressful for us. And the lack of communication adds to this.


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## JudyH (Dec 3, 2021)

So frustrating for you to see this once capable man befuddled and betwixt. His fingers no longer move right. The valve is “reversed” from the way they were on the job. He wants to be in control but nothing he does is right.  Not the man you married.  I wish we could turn back time.


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## clifffaith (Dec 6, 2021)

We have been totally gobsmacked by today's news. Cancer has invaded the bladder muscle. Standard treatment is to remove the bladder, leaving him peeing in a bag. Next step is to find both an oncologist, and an oncologist urologist to do the surgery. UC Irvine has been suggested, and I guess we'll go back to City of Hope too so we have two opinions, and that doctor is an expert at fashioning new bladders out of intestines, if that is even an option for Cliff.


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## Passepartout (Dec 6, 2021)

Faith, I'm sorry and saddened for this turn of events. We'll hold both of you in our hearts and thoughts. Wishing the best for all of you.


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## rapmarks (Dec 7, 2021)

So sorry Faith, rough times


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## GrayFal (Dec 7, 2021)

clifffaith said:


> We have been totally gobsmacked by today's news. Cancer has invaded the bladder muscle. Standard treatment is to remove the bladder, leaving him peeing in a bag. Next step is to find both an oncologist, and an oncologist urologist to do the surgery. UC Irvine has been suggested, and I guess we'll go back to City of Hope too so we have two opinions, and that doctor is an expert at fashioning new bladders out of intestines, if that is even an option for Cliff.


Take a deep breathe. 
This is very sad and devastating news. 
It is important to digest this news and decide on the right course of action based on Cliffs ability to care for himself, his mental status and his quality of life if he does have this surgery. 
What if he didn’t have the surgery? 
Is this a slow moving cancer? 
Could he have radiation treatment instead to slow the spread? 
All questions to ask his urologist but also his primary care MD who hopefully has know Cliff for a while. 

Sometimes when the train is moving fast on the track it’s hard to stop it.
But please don’t feel the need to decide immediately on the next course of action. 
Slow down and get some more information. You deserve to do this.


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## JanT (Dec 7, 2021)

Faith, I'm so very sorry for everything you're going through.  Cliff's memory issues alone are enough to struggle with.  The cancer is on a level of it's own.  Add the two together and I can't imagine what you must be feeling.  Cliff's inability to figure out "the engineering" of the cathetar could be a sign his memory issues are evolving more rapidly - sometimes this will happen as a result of surgery, injury, or even a UTI.  My mom developed a UTI and took a sudden downturn.  I'm not sure why this happens but according to the healthcare workers that were caring for her, it is very common.  I'm sure his own frustration with the situation must be completely overwhelming for both of you.

GrayFal gave some very helpful and solid things for you and Cliff to consider. Quality of life is important - for both of you.  Don't feel pressured to make a decision this minute.  As GrayFal said, slow down and get additional information.  Sending you hugs, prayers, and strength.


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## pedro47 (Dec 7, 2021)

These are my suggestions only.
You need some rest.
You need to seek some professional counseling.
Finally, Cliff and you need to sit down with a professional counselor and your medical team to discuss & explain Cliff option.

Leave no stones unturn.

My prayers are with Cliff and you.


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## Krteczech (Dec 7, 2021)

Having you both in my thoughts since you started your journey to old folks residence. Be strong and believe in progress in medical care. Enjoy your new environment and hope for the best.


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## joestein (Dec 7, 2021)

My thoughts are with you and Cliff.    Professional medical counseling and 2nd and 3rd opinions are very important.   Take your time to understand your options.  I wish you both the very best of outcomes.

My Dad developed a sort of blood cancer in his 80s.    He rushed into an experimental treatment (supposedly no other treatments existed) without getting other opinions.  It made him incredibly lethargic, and it ruined his quality of life.  It sent him to the hospital multiple times in a few months.  The last time in which he refused to eat until his body shut down and he passed away.    

He probably would have passed away from it anyway, but my siblings and I think he would have had another couple of quality years if he just did nothing or maybe he could have found another treatment eventually.

Joe


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## silentg (Dec 7, 2021)

So sorry you and Cliff are going through this ordeal. My thoughts are with you and Cliff.


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## headoflife (Dec 7, 2021)

Sending all positive thoughts your way.  My mom's dementia was always significantly worse when she had a UTI.  I am not sure if it is related to the location of the infection or not, but if so, perhaps that is why you are seeing such a marked difference in Cliff. I am glad you are seeking out multiple opinions.  Be sure to ask for all the options, and what the best guess is for the outcome if you follow that path.  Doctors are trained to fix things, but many of them would choose less aggressive measures for themselves and their family.


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## chemteach (Dec 7, 2021)

I'm so sorry to hear about this Faith, just getting caught up with the thread.  Sending positive thoughts your way.


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## easyrider (Dec 7, 2021)

How are you holding up Faith ? I hope things go smoother and you are able to get some down time.

Bill


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## Luanne (Dec 7, 2021)

Faith, I am so sorry to hear about this latest development.


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## mentalbreak (Dec 8, 2021)

What a nightmare. I am so sorry to learn about the latest twists and turns.


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## pedro47 (Dec 8, 2021)

joestein said:


> My thoughts are with you and Cliff.    Professional medical counseling and 2nd and 3rd opinions are very important.   Take your time to understand your options.  I wish you both the very best of outcomes.
> 
> My Dad developed a sort of blood cancer in his 80s.    He rushed into an experimental treatment (supposedly no other treatments existed) without getting other opinions.  It made him incredibly lethargic, and it ruined his quality of life.  It sent him to the hospital multiple times in a few months.  The last time in which he refused to eat until his body shut down and he passed away.
> 
> ...


To the OP
Please read this post again but very slowly. I went thru this was my father. 
It is all about The Quality of Life for your love one.  IMHO.


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## nerodog (Dec 8, 2021)

Take a moment to digest all this news. It's shocking qland you need time to process and then decide a course of action. Have the medical team assist you as well. It can be overwhelming  and it sounds like you are doing this solo. Can you get any home care services through insurance,  visiting nurses to help out ? It would take some things off your plate.  My prayers and sincere thoughts are with you.  Big hug.


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## sun starved Gayle (Dec 8, 2021)

I am very sorry you and Cliff are going through this Faith.


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## stmartinfan (Dec 8, 2021)

So sorry to hear this news.


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## JudyH (Dec 8, 2021)

I am so sorry to hear this but I am not surprised by the surgery outcome. I recently had two very close relatives with bladder cancer that I cared for.  Since I worked in the medical field, I dealt with all their issues. 
I can’t predict what will happen with Cliff, but the gold standard of care is to remove the bladder. If the cancer has not spread the outcome will be optimistic. If it has spread, his quality of life will go downhill.  Both relatives were seen too late in their treatment. Our female relative could not accept living with a bag, even if she had,  her surgery was too late and it spread within 18 months. My father-in-law too could not accept the idea of losing his bladder and he never could have been capable of cleaning and dealing with external bags. It would have been left to others to do it daily. Infection from the port, the bypass tubes and catheters brought him down, not the cancer.
For both these relatives there was no quality of life after late diagnosis. Each chemo, radiation, and medication just left them incapacitated and miserable.  This sounds tough but having no treatment  would have left them mobile, relatively comfortable, able to eat what they liked and leave the house when they could and see friends cause they more or less felt ok. 
Your dear husband already has other serious issues. He might not be able to make a thought out decision about this, and it might be left up to you to choose which direction to go.


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## clifffaith (Jan 4, 2022)

Cliff has been encouraged to not have his bladder removed because of his age in spite of that being the “gold standard” of treatment in the US. Apparently in Europe and the UK not immediately yanking the bladder is their standard procedure. There is concern he would not recover well from the five hour operation. Of course he (we) have jumped on that option. The oncologist we saw yesterday (what a difference a day makes — here I sit outside in the cool weather because I am not allowed inside because of Covid surge) spent easily an hour explaining a chemo/radiation combo and joining a study that may add immunotherapy. A computer will assign him to one of two groups and we will know if he is in the immuno group. Oncologist explained that his standard of care would be elevated regardless because of all the entities involved in watching the study.

First step was bloodwork to be sure he can withstand the chemo and check his iron levels (he is bleeding and passing clots). Nextweek he’ll have a scan to look to be sure they don’t see cancer in other organs. They also want him to have mohs surgery on a skin cancer and to be done with that before they start him on chemo/radiation/immunotherapy.

I am so glad I got to hear directly from yesterday’s doctor, but I worry about what I am missing today and Cliff’s ability to communicate it.


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## Passepartout (Jan 4, 2022)

Best wishes Faith, for Cliff's recovery. I understand how you want to be an active participant in his care. My wife would want the same thing if it was me. I guess that at this point the doctors must be trusted to give Cliff the best care options. Last year when my pacemaker and it's attendant leads became infected and I had to go to an out-of-state hospital and my wife wasn't allowed in, due to Covid, my wife was going nuts! Thankfully, it all turned out well. And having had Mohs surgery (I'm on my 3rd nose now), I can speak to getting that taken care of before the chemo gets started.

All the best to you both!

Jim


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## b2bailey (Jan 4, 2022)

Oh Faith. Everything happening is so difficult. But, to be refused admittance to an important discussion is ridiculous. I can imagine myself throwing a fit, if that's what I was told. Don't know how you were able to maintain your composure -- congratulations that you did. I am so sorry that the move to your new home, and first holidays there has been marred by Cliff's health crisis. Press On.


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## DeniseM (Jan 4, 2022)

What if you had Cliff call you at the beginning of the appointment, put his phone on speaker and put it where you can hear the doctor and he can hear you.


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## clifffaith (Jan 4, 2022)

They put me on speaker phone as I sat in a chair at valet parking. I was mostly able to hear what the doctor was saying. Radiation of whole bladder (not just the cancerous area) 32 days in a row with Saturday and Sunday off. Doctor warned Cliff that he, the doctor, will not be on Cliff's list of favorite people by the time they are done. Chemotherapy/immunotherapy will be going on simultaneously, although best I could tell it will not be daily. If Worldmark's system would work, I'd start cancelling Feb & March reservations.


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## clifffaith (Jan 4, 2022)

Wow! Gal in the "ushering patients between rooms" department was really on top of things. As she took him to the examination room Cliff told her how difficult it was for me to be sitting outside while he was inside talking to a new doctor about a life altering illness. He eventually exited the medical building through a different door than he went in, but she had apparently been watching out for him and saw that he was done with the doctor and came from the other side of the building to find us in valet parking to give us the name and number of the person to talk to in the Patient Experience department. She asked us to please call because they needed to hear from patients directly how hard it was to not be allowed inside with a support system. I'll do that tomorrow. What impresses me most is that she recognized him--we are both having a heck of a time recognizing even people we had dinner with at the old folks home the next time we see them!


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## clifffaith (Jan 13, 2022)

OH. MY. GOD. And so it starts, the American medical system at work. Yesterday about 4pm Cliff answers the phone, and from the caller ID I assume it is the CT scan department at UC Irvine calling to remind him of his 9:30 chest CT this morning. They want to check to be sure cancer isn't detected anywhere outside the bladder. I start to hear a round and round about billing. Cliff is asking for an "invoice", he can't go to his insurance company based on a phone call and round and round some more. By then I had forgotten I'd seen UCI on the phone and decided the issue must be the CT scan of his bladder back in October that the insurance company had denied. Round and round some more. Finally figure out UCI radiology department is telling us that Cliff's Aetna PPO will not cover, at least not in full, a CT scan done at UCI because UCI is "out of network". 

Then we spent an hour on the phone with Aetna. That's right, UCI is out of network. Discuss with ourselves, show up and pay/don't show up. Opted not to show up because he will be going back to radiology anyway to have his skin marked for the pending radiation treatments being done in the clinical trial. In the meantime we put out a call to the gal in charge of the clinical trial. Call was returned while we were at dinner, her suggestion (without input from us) was also to wait until the "skin marking appointment" and to call her with any questions.

Called today and left a message, she returned our call an hour later. Are you effing sh*ting us? WHAT?! Sorry, no clinical trial for you because your insurance company is not picking up the charges that insurance companies usually would because UCI is effing OUT OF NETWORK. I am thinking that this is also why City of Hope went silent on us. No insurance coverage at the facility, so out of luck. You'd effing think someone would have checked before we wasted another two weeks (more like four because the urologist oncologist who sent us to UCI turns out also to be out of network, in spite of the guy at Aetna saying "I see his name" when we inquired. Yes, I find his name there too with a big OUT OF NETWORK next to it). We said to clinical trial gal, just like we'd said to City of Hope when we got them to talk to us briefly six weeks after they disappeared, "we are not indigent, we can pay for some of this, are we talking a hundred thousand dollars (remember we got $230K more than we'd listed our home for) or a million dollars? Answer, twice over the course of the conversation, was that paying the difference between in-network and out-of-network "adds up very fast". 

So that's it. No clinical trial. Back to square one. He has an appointment with a new in network urologist at 4pm on the 28th.  That referral came from the concierge doctor here at Reata Glen -- I'd made it before we met with the UCI folks, and had planned to cancel it as we got further into the details of the trial. The one bright moment in all of this is UCI told us they want a skin cancer that requires mohs surgery removed prior to the now aborted trial, and that doctor is in network because I made the appointment myself when I thought the February 14th UCI dermatologist appointment was too far out to suit me.

We are both shedding tears of fear and frustration today.


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## lynne (Jan 13, 2022)

I am so sorry to hear this crazy, unwelcome news.  Do you have a health plan that provides out of network deductibles where when reached, will pick up 100% of the medical?  I know that HMSA here in Hawaii (Blue Cross/Blue Shield) has 2 deductibles one of in-network and one for out-of-network which is twice the cost of in-network but not out of reach.  Once the deductible is met, HMSA picks up 100% of the out of network costs.  Just seeing if there is an alternative to starting over.


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## isisdave (Jan 13, 2022)

Remind us again -- why Aetna? Is Cliff on a Medicare Advantage plan? If so could you get him back on regular Medicare? We're now in Regular Enrollment period until end of March, but coverage would begin July 1.  But maybe your recent move would qualify you for a Special Enrollment Period.


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## JanT (Jan 13, 2022)

Faith,

It feels so trivial to say, "I'm so sorry," but I am - so terribly sorry. I have found the American medical system to often be lacking in communications within itself. It creates the very nightmare situation you find yourselves embroiled in now. I don't understand how it gets so messed up - other than what I stated above - lack of communication. Well, and sometimes just sloppy work.

The good news is you do have another appt with an in-network urologist on the 28th but that seems like forever right now.  I cannot imagine the frustration you are both feeling; much less the fear you are both feeling.  Please know that so many people are praying for y'all and asking the Lord to lay His healing hands on Cliff and for Him to give you the strength you need to walk this very difficult time.



clifffaith said:


> OH. MY. GOD. And so it starts, the American medical system at work. Yesterday about 4pm Cliff answers the phone, and from the caller ID I assume it is the CT scan department at UC Irvine calling to remind him of his 9:30 chest CT this morning. They want to check to be sure cancer isn't detected anywhere outside the bladder. I start to hear a round and round about billing. Cliff is asking for an "invoice", he can't go to his insurance company based on a phone call and round and round some more. By then I had forgotten I'd seen UCI on the phone and decided the issue must be the CT scan of his bladder back in October that the insurance company had denied. Round and round some more. Finally figure out UCI radiology department is telling us that Cliff's Aetna PPO will not cover, at least not in full, a CT scan done at UCI because UCI is "out of network".
> 
> Then we spent an hour on the phone with Aetna. That's right, UCI is out of network. Discuss with ourselves, show up and pay/don't show up. Opted not to show up because he will be going back to radiology anyway to have his skin marked for the pending radiation treatments being done in the clinical trial. In the meantime we put out a call to the gal in charge of the clinical trial. Call was returned while we were at dinner, her suggestion (without input from us) was also to wait until the "skin marking appointment" and to call her with any questions.
> 
> ...


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## Talent312 (Jan 13, 2022)

IMHO, for not checking right up front, these peep are thieves of your time + energy.
This is why we have original Medicare + Supplements, not an Advantage plan.
It's worth the $$ knowing we don't have to fool with networks.
------------------
Recently, DW had a 6N stay at a hospital. Medicare paid them $11,500.
The hospital billed us $50. What for? They're not sure & will get back to us.
_It's not like there was a mini-bar in the room.

._


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## VacationForever (Jan 13, 2022)

I am so sorry to read this, Faith.  We were on Kaiser (HMO) Advantage plan when my husband turned 65 and didn't even think about "choice" of going with Medicare Supplement because Kaiser was all that we had known.  When we moved, he was 67 and we wanted to get him on supplement and was rejected due to pre-existing condition.  We struggled through Advantage plan, bad first year - switched to another one and was good for 2 years until we could not find any orthopedist on their plan, switched to another plan again, and finally we tried again this year for a supplement plan and he was accepted.  We are so glad to be out of the Advantage plan hell.


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## clifffaith (Jan 13, 2022)

Talent312 said:


> IMHO, for not checking right up front, peep are thieves of your time + energy.
> This is why we have original Medicare + Supplements, not an Advantage plan.
> It's worth the $$ knowing we don't have to fool with networks.
> ------------------
> ...


Cliff is 18 years older than I am. By the time I was signing up for Medicare in 2020 and going the Supplement route (suggested because of my back issues by the Aetna HMO rep the previous year when Cliff was changing from Healthnet HMO to Aetna HMO), it was too late for Cliff to qualify for a supplement plan. He was rejected because of having skin cancers. He changed from the Aetna HMO to Aetna PPO in December, thinking the PPO would be the best way to go once he started treatment for bladder cancer (diagnosed in October). During December and earlier this month he kept saying he could "go anywhere". I knew that wasn't quite true, but had relied on doctor's offices, who ask for all your insurance info when making an appointment, and then take a copy of your cards when you show up, to say "whoops, sorry, we don't take your insurance". Thieves of time, indeed.


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## DaveNV (Jan 13, 2022)

Any chance Cliff is a veteran?  If so, I wonder if the VA has anything to offer?

Dave


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## Jodyv (Jan 13, 2022)

I'm sure you've investigated this already, but doesn't Medicare part B cover cancer treatment? I don't know how to forward the information, but I found it under Medicare coverage of cancer treatment services.  It says it covers diagnostic tests like X-rays and CT scans.  (I know it can't be as simple as it sounds).  All of this is so dreadful without having to fight for your treatments.  You have many friends on this format.  We're all hoping and praying for the best...


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## sun starved Gayle (Jan 13, 2022)

I am so sorry for the difficulties you and Cliff are going through Faith.


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## susieq (Jan 13, 2022)

Faith, FWIW, my husband has AARP by United Healthcare. He also has a type of Cancer - NHL - which was diagnosed *BEFORE* he signed up. All his Dr. appointments are covered, he can go to any Dr, that accepts Medicare. I know we're on the other coast, and it's probably a long shot, but may be worth a try.


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## headoflife (Jan 13, 2022)

I am so sorry.  I hate our healthcare system in general, and the fact that you are tasked with navigating it at the worst possible time adds insult to injury.  I have no useful info on insurance, other than to second the question about in newt-work and out of network benefits.  My deductible for out of network is double the in network one, but it is still manageable if I really wanted an out of network provider.  Sending good thoughts your way.


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## VacationForever (Jan 13, 2022)

Is it possible to just switch back to Traditional Medicare for now?  Medicare will pay 80% while Cliff's out of pocket will be 20%. Much better than starting all over again.


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## Glynda (Jan 13, 2022)

susieq said:


> Faith, FWIW, my husband has AARP by United Healthcare. He also has a type of Cancer - NHL - which was diagnosed *BEFORE* he signed up. All his Dr. appointments are covered, he can go to any Dr, that accepts Medicare. I know we're on the other coast, and it's probably a long shot, but may be worth a try.



We too have AARP United Healthcare and have yet to have a problem with any doctor, procedure or ER visit. Never even heard the words "out of network" since he retired in 2012.


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## bogey21 (Jan 14, 2022)

Talent312 said:


> This is why we have original Medicare + Supplements, not an Advantage plan.
> It's worth the $$ knowing we don't have to fool with networks.



I get it.  People go with HMO Advantaage plans to save money on their premiums but risk what Faith is going through at the worst of times.  I agree that if one can afford it, Traditional Medicare plus a Supplement plus a Prescription Drug Plan avoids a lot of potential grief.  That is what I have and it costs me about $5,000 a year between Part B Premiums, Supplement and Prescription Drug Premiums and IRMMA, My take is if you can't afford the cost of Traditional Medicare, a PPO Advantage Plan if one is available in your area is one's next best option... 

George


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## AnnaS (Jan 14, 2022)

I have not been around much for a while,  just came to browse for a minute.  

I am sorry to read all the difficulties you are Cliff are going through.  You are both in my thoughts and prayers.


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## clifffaith (Jan 15, 2022)

We don't have official confirmation that we are back on track with the trial, but hope to hear that we are after the holiday weekend. 

The gal in charge of the UCI trial gave us a number for someone in their insurance department who in turn told us about an Anthem PPO and a Blue Shield plan that would work at UCI. She gave us the name of two insurance brokers. After about four hours on the phone over two days, we have done the paperwork to switch Cliff to a Blue Shield medicare supplement plan. For whatever reason, BS has a moratorium on the pre-existing condition clause that usually applies for people who don't sign up for a supplement plan when they first start Medicare. And apparently there is some sort of birthday "present" that allows those with a medicare supplement plan to change plans during  their birthday month. So he will be on a Blue Shield plan for $370/month for two months, and then in April switch to an Anthem supplement for $100 less per month. We've also moved me to Blue Shield which is $20 less per month than my United Health Care supplement plan, but then added back vision/hearing/OTC med freebies for $14/month. And we've changed my Rx plan to one that is $20/month less than my AARP plan, and I believe Cliff will be on that same plan.

Our heads are swimming at this point, but I hope we now have a path forward.


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## Luanne (Jan 15, 2022)

@clifffaith  Sounds like things are looking up.


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## clifffaith (Feb 11, 2022)

Happy Valentine's Day to us. Cliff finally starts treatment on Monday. 32 days of radiation with weekends off, and two rounds of five days of chemo (about 3 weeks apart) delivered via a pump he'll wear. The clinical trial computer  randomization did not choose him for immunotherapy, so that is off the table. Fingers crossed he is on the road to getting better.


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## Passepartout (Feb 11, 2022)

clifffaith said:


> Happy Valentine's Day to us. Cliff finally starts treatment on Monday.


Fingers and eyes crossed for you both. Hang in there.


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## AnnaS (Feb 12, 2022)

clifffaith said:


> Happy Valentine's Day to us. Cliff finally starts treatment on Monday. 32 days of radiation with weekends off, and two rounds of five days of chemo (about 3 weeks apart) delivered via a pump he'll wear. The clinical trial computer  randomization did not choose him for immunotherapy, so that is off the table. Fingers crossed he is on the road to getting better.



Hang in there and you both take care of yourselves - I hope you can take a breather when you need to.


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## TheHolleys87 (Feb 12, 2022)

clifffaith said:


> Happy Valentine's Day to us. Cliff finally starts treatment on Monday. 32 days of radiation with weekends off, and two rounds of five days of chemo (about 3 weeks apart) delivered via a pump he'll wear. The clinical trial computer  randomization did not choose him for immunotherapy, so that is off the table. Fingers crossed he is on the road to getting better.


Best wishes for both of you. I know from experience - it’s a long process, tiring in many different ways.


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## Talent312 (Feb 12, 2022)

Hang in there. It's gonna be a long ride.
---------------
This makes my root canal on Monday seem like small potatoes.
.


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## Jodyv (Feb 12, 2022)

I'm dealing with my mother's health issues.  Insurance is so difficult to navigate.  I certainly have a tiny window into what you are experiencing in addition to the daily trials of dealing with cancer.  And you moved in the middle of all this!!  Wishing you all the best...and extra strength when it's a hard day.


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## JudyH (Feb 12, 2022)

I wish both of you the best.


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## slip (Feb 12, 2022)

Great news, hoping for the best.


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## lockewong (Feb 12, 2022)

Best wishes and thoughts for you and Cliff.


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## Glynda (Feb 13, 2022)

It's good to hear an update from you! Wishing you both all the best!


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## JanT (Feb 13, 2022)

Praying for both of you.


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## Sugarcubesea (Feb 13, 2022)

clifffaith said:


> Happy Valentine's Day to us. Cliff finally starts treatment on Monday. 32 days of radiation with weekends off, and two rounds of five days of chemo (about 3 weeks apart) delivered via a pump he'll wear. The clinical trial computer  randomization did not choose him for immunotherapy, so that is off the table. Fingers crossed he is on the road to getting better.



@clifffaith, a very Happy Valentines Day to you and Cliff.  I hope you are enjoying your new place and I will be keeping Cliff in my prayers.


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## clifffaith (Apr 1, 2022)

Cliff finished his chemo/radiation treatment on Wednesday. Every weekday (and three weekend days) we had a 90 minute round trip  drive to UC Irvine. On days he had radiation only, with no chemo, labs or doctors appointments, we were in and out in 20 minutes. In fact several times the valets hadn't yet moved our car to the parking garage when we came back out, and on super busy valet days waiting for our car to be returned took longer than the treatment itself.

By this last week all the "do not sit here" stickers that kept people six feet apart had been removed from waiting room chairs, although masks and temperature checks were still in place. We solved them not wanting extra people inside early on by me taking Cliff's arm like I was leading him and doing all the talking to receptionists. That made me look like a caregiver, and my Reata Glen badge with my last name that does not match Cliff's helped promote that charade. He definitely needs a second pair of ears to hear what his doctors say -- he'll copy me on an email to his siblings and I have to follow up to give them the actual facts. And on days he had multiple appointments he pretty much did need me to shepherd him from office to office to be sure he got where he needed to be on time.

He came through radiation and chemo with almost no side effects. His doctors were amazed at how well he did and I am so thankful! On day seven he had a bout of diarrhea that caught him by surprise, but we were home on a Sunday so that was no problem. After that we had plenty of Imodium on hand that he used as needed. That was it. No nausea, hair loss or the mouth ulcers they warned him about. Not even any fatigue. I drove the twelve days he was connected to the chemo pump (two six day sessions three weeks apart), otherwise he drove.

Next step is to give his bladder a break before being scoped again in mid-June, and they will repeat the CT scan making sure they don't see cancer in other organs. They tell us that 75-80% of patients have a positive outcome from the radiation/chemo treatment, although bladder cancer apparently tends to reoccur. If we can get him cancer free for a year he is then eligible for full care (memory, assisted living, skilled nursing) under our contract with the old folks home. If they end up having to remove his bladder at some point, at least we tried the alternate approach and he did not suffer during it.


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## slip (Apr 1, 2022)

That's great news. Hoping for the best.


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## Patri (Apr 1, 2022)

I am happy for Cliff, and impressed with your take charge skills.


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## DaveNV (Apr 1, 2022)

You both deserve a major award for dealing with all of this.  Good job!

Here's hoping he scopes clean and healthy. Cancer is a bitch.

Dave


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## heathpack (Apr 1, 2022)

Wow that’s awesome!  No side effects!  Can’t ask for much better than that.


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## JudyH (Apr 1, 2022)

Congratulations. That’s all good news.


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## headoflife (Apr 2, 2022)

I'm so glad you both made it through this part of the journey.  Sending good thoughts.


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## Sugarcubesea (Apr 2, 2022)

clifffaith said:


> Cliff finished his chemo/radiation treatment on Wednesday. Every weekday (and three weekend days) we had a 90 minute round trip  drive to UC Irvine. On days he had radiation only, with no chemo, labs or doctors appointments, we were in and out in 20 minutes. In fact several times the valets hadn't yet moved our car to the parking garage when we came back out, and on super busy valet days waiting for our car to be returned took longer than the treatment itself.
> 
> By this last week all the "do not sit here" stickers that kept people six feet apart had been removed from waiting room chairs, although masks and temperature checks were still in place. We solved them not wanting extra people inside early on by me taking Cliff's arm like I was leading him and doing all the talking to receptionists. That made me look like a caregiver, and my Reata Glen badge with my last name that does not match Cliff's helped promote that charade. He definitely needs a second pair of ears to hear what his doctors say -- he'll copy me on an email to his siblings and I have to follow up to give them the actual facts. And on days he had multiple appointments he pretty much did need me to shepherd him from office to office to be sure he got where he needed to be on time.
> 
> ...



Faith,  I'm so happy to hear that Cliff is doing so much better and your idea to get into the appointments by being a caregiver was brilliant...I so hope Cliff can be  cancer free for a year so that he is eligible for full care at your new place....


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## PcflEZFlng (Apr 2, 2022)

Wonderful news and answered prayer, Faith. May there be many blessings to you and Cliff.


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## Glynda (Apr 3, 2022)

Wow! You two need a break and rest from the treatment! Good news that he did so well!


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## clifffaith (Jun 23, 2022)

We got the news yesterday— no evidence of cancer  visually, on the biopsies of the bladder, or on the chest and abdominal CTs. It appears that the chemo and radiation treatments have at least temporarily killed off Cliff’s bladder cancer. The clinical trial he is part of will follow him for five years, with monitoring that will be at set intervals. Even if the cancer comes back at some point (and bladder cancer apparently is one that tends to reoccur), I am so glad UCI gave him the option of trying a less radical approach than the “gold standard” of just yanking his bladder. Next goal is to be cancer free for one year so that he is eligible for memory care, assisted living and skilled nursing here at the old folks home should he ever need it.


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## bluehende (Jun 23, 2022)

clifffaith said:


> We got the news yesterday— no evidence of cancer  visually, on the biopsies of the bladder, or on the chest and abdominal CTs. It appears that the chemo and radiation treatments have at least temporarily killed off Cliff’s bladder cancer. The clinical trial he is part of will follow him for five years, with monitoring that will be at set intervals. Even if the cancer comes back at some point (and bladder cancer apparently is one that tends to reoccur), I am so glad UCI gave him the option of trying a less radical approach than the “gold standard” of just yanking his bladder. Next goal is to be cancer free for one year so that he is eligible for memory care, assisted living and memory care here at the old folks home should he ever need it.


Such great news


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## slip (Jun 23, 2022)

clifffaith said:


> We got the news yesterday— no evidence of cancer  visually, on the biopsies of the bladder, or on the chest and abdominal CTs. It appears that the chemo and radiation treatments have at least temporarily killed off Cliff’s bladder cancer. The clinical trial he is part of will follow him for five years, with monitoring that will be at set intervals. Even if the cancer comes back at some point (and bladder cancer apparently is one that tends to reoccur), I am so glad UCI gave him the option of trying a less radical approach than the “gold standard” of just yanking his bladder. Next goal is to be cancer free for one year so that he is eligible for memory care, assisted living and memory care here at the old folks home should he ever need it.




That is really great news.


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## b2bailey (Jun 24, 2022)

Thrilled for you both!


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## AnnaS (Jun 24, 2022)

Great news!!!


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## Glynda (Jun 24, 2022)

Fantastic!


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## JudyH (Jun 25, 2022)

Wow. Such good news to hear.


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## mentalbreak (Jun 30, 2022)

What great news! Hope you are settling in to your new home.


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## Sugarcubesea (Jun 30, 2022)

clifffaith said:


> We got the news yesterday— no evidence of cancer  visually, on the biopsies of the bladder, or on the chest and abdominal CTs. It appears that the chemo and radiation treatments have at least temporarily killed off Cliff’s bladder cancer. The clinical trial he is part of will follow him for five years, with monitoring that will be at set intervals. Even if the cancer comes back at some point (and bladder cancer apparently is one that tends to reoccur), I am so glad UCI gave him the option of trying a less radical approach than the “gold standard” of just yanking his bladder. Next goal is to be cancer free for one year so that he is eligible for memory care, assisted living and skilled nursing here at the old folks home should he ever need it.



Wow Faith, this is really great news... Congrats


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## Timeshare Von (Jun 30, 2022)

So happy for the great news!


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## dsmrp (Jun 30, 2022)

Yes, great news. Enjoy each day you don't have to drive anymore!


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## silentg (Jun 30, 2022)

Great news!


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## easyrider (Jun 30, 2022)

I'm happy for you guys.

Bill


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## VacationForever (Jun 30, 2022)

Great news!  Now you both can relax a little bit more in your new "old folks home".


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## susieq (Jun 30, 2022)

How wonderful!!! Now you can enjoy your "free" time!!!


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## rickandcindy23 (Jun 30, 2022)

That is good news.


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## headoflife (Jul 2, 2022)

That's wonderful!


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