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Bladder Cancer

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 musiclovingmom (original poster member #38207) posted at 5:13 AM on Wednesday, June 2nd, 2021

My dad has stage 4 bladder cancer. At first, they thought it would be easy to treat. Some scraping and burning procedure. Unfortunately, the cancer was deeper than they thought. He has seen an oncologist and a surgeon. The treatment path they are following is 3 rounds of chemo, 2-3 weeks apart, followed by surgery sometime in late August or early September. My dad is 70 and otherwise in good health. And, while I logically understand that he has a relatively good chance of surviving this, I am scared. And I’m sad and angry. Dad doesn’t want to talk about it and he doesn’t want to hear anything that indicates we are “sorry” or think he is dying already. I’ve told my kids. My husband knows. So does my pastor and much of the church. And somehow, I still feel alone. Like I have to hold it all together to keep everyone else stable. It’s starting to spiral a bit. When I carry one sad thing, all the other sad things just pile on and I find myself struggling with all parts of life. I don’t really have a question. Just needed to say it again, to a different audience, hoping that, somehow, saying it again will help me accept it, process it and move forward again tomorrow.

posts: 1764   ·   registered: Jan. 21st, 2013
id 8664379
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BearlyBreathing ( member #55075) posted at 5:53 AM on Wednesday, June 2nd, 2021

MLM, it is scary and it makes sense you are scared, angry and sad. I like that they have a plan and that your dad is only 70. Be kind to yourself - allow yourself to feel whatever you need to feel. Processing it is …. A process. It will happen over the next few weeks and months.

Sending your dad mojo - and hugs to you.

Me: BS 57 (49 on d-day)Him: *who cares ;-) *. D-Day 8/15/2016 LTA. Kinda liking my new life :-)

**horrible typist, lots of edits to correct. :-/ **

posts: 6483   ·   registered: Sep. 10th, 2016   ·   location: Northern CA
id 8664385
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NorthernMSB ( member #69725) posted at 11:50 AM on Wednesday, June 2nd, 2021

Hi.

I know where you are, my dad had multiple myeloma diagnosed 4 years ago, they didn’t catch it until he was in the end stages. He did chemo etc and I lost him in January this year. He was given about 1 1/2 years so I am grateful.

It is scary and lonely especially if he doesn’t want to talk about it. But don’t let it consume you. Enjoy every moment with him and let him follow the path he needs to in order to deal with it. Be aware that the chemo can cause a type of fogginess or confusion in some (the nurses here called it chemo brain). Be patient with that and know it will clear up when the chemo is done.

I am sending you all the good thought I can. Remember to take care of the you too (I forgot ) and live your life too. Take help when offered too. Big hugs and I’m sorry you are going through this, and sorry your dad has to do it.

Me: BW-54
Him-WH-58

Too many Ddays now to count, all with the same LTAP ex-girlfriend (or I guess current) except the brief fling November 2018-Christmas Eve 2018 with another ex-girlfriend

I'm tired

posts: 496   ·   registered: Feb. 10th, 2019
id 8664402
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NorthernMSB ( member #69725) posted at 11:50 AM on Wednesday, June 2nd, 2021

Duplicate

[This message edited by NorthernMSB at 5:50 AM, June 2nd (Wednesday)]

Me: BW-54
Him-WH-58

Too many Ddays now to count, all with the same LTAP ex-girlfriend (or I guess current) except the brief fling November 2018-Christmas Eve 2018 with another ex-girlfriend

I'm tired

posts: 496   ·   registered: Feb. 10th, 2019
id 8664403
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WhoTheBleep ( member #49504) posted at 1:34 PM on Wednesday, June 2nd, 2021

I'm so sorry, MLM. I know where you are. I went through this with my own father 10 years ago. He was 67 at the time. Urinated blood one night, and a few weeks later was diagnosed with kidney cancer. The transitional kind that was working its way into his bladder, and had already migrated into his lymph nodes. He was like the 1% of the 1% of the 1% who gets this rare transitional cancer.

He is now 77 and has been cancer-free for several years. His doctors found the perfect cocktail of chemo. Once he was cancer-free, his oncologist told him "you should not be here right now."

I know you are afraid. Lots of questions and unknowns for the next several months. I know you feel like you have to hold everything together, but don't be afraid to lean on loved ones every once in awhile. Take time for yourself. Self-care. Deep breaths, literally.

You have been heard. (((MLM)))

I believe we have two lives: the one we learn with, and the one we live with after that. --The Natural

posts: 4526   ·   registered: Sep. 6th, 2015   ·   location: USA
id 8664415
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 musiclovingmom (original poster member #38207) posted at 1:49 PM on Wednesday, June 2nd, 2021

Be aware that the chemo can cause a type of fogginess or confusion in some

This I know. I’m fairly certain it is the side effects of chemo that scare me worse than the cancer diagnosis. I was handling everything ok until the surgeon said chemo before surgery. My grandfather died from complications due to lung cancer 12 years ago. I remember so vividly how the chemo impacted him. How he went from being so strong and capable to being so frail.

My dad and I had a terrible relationship growing up. It wasn’t until my grandpa died that things changed. Having my grandpa live with them the last couple months of his life made my dad a completely different person and I’ve enjoyed having a dad since then. Losing my grandpa broke me. Watching his decline was so hard. The idea of watching that again and, this time, having to explain what’s happening to my sad and scared children who think PawPaw hung the moon, it’s just a lot.

posts: 1764   ·   registered: Jan. 21st, 2013
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tushnurse ( member #21101) posted at 4:53 PM on Wednesday, June 2nd, 2021

(((MLM))))

The fear of the unknown is worse than the treatment for many many people. Understand that there will be some effects from the chemo but I also want to encourage you with the fact that many chemotherapy treatments now are very tolerable and even allow people that still work to continue working.

Make sure he has his pre and post infusion meds and understands the times and doses of what he needs to take.

The other coon thing that happens with chemo other than brain fog is neuropathy a numbness of fingers and toes that can even be a bit painful. Tell your dad no one gets a gold star from trying to be a tough guy. Keeping open communication with the dr when he feels bad or had pain or can't keep things down is essential. Encourage him to communicate small issues to avoid big problems and hospitalization.

The majority of issues with chemo that require hospital stay can usually be prevented with ongoing communication with the dr or nurses. Some oncology practices even have nurse care managers that check in and are a resource. Use Them!!!!

Me: FBSHim: FWSKids: 23 & 27 Married for 32 years now, was 16 at the time.D-Day Sept 26 2008R'd in about 2 years. Old Vet now.

posts: 20380   ·   registered: Oct. 1st, 2008   ·   location: St. Louis
id 8664461
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 musiclovingmom (original poster member #38207) posted at 8:23 PM on Wednesday, June 2nd, 2021

Thanks tush. My mom will be doing most of dad’s after-care. They live an hour and a half from the nearest oncology office and closer to three hours from where he will be getting his treatments. Their house is 45 minutes from the nearest town with any medical staff. I doubt there will be much “check-in” care unless it is phone or virtual. I do worry about the neuropathy. They have stairs. And, Dad loves woodworking and shooting sports, so that would have a profound impact on his enjoyment of life.

He will try to be a tough guy (refused any care even when he had CoVid in December), but Mom has a way of helping him see the benefit of getting the care he needs. I’m grateful for her finesse and persuasive abilities.

posts: 1764   ·   registered: Jan. 21st, 2013
id 8664539
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Catwoman ( member #1330) posted at 8:47 PM on Wednesday, June 2nd, 2021

The American Cancer Society and the treating hospital should have some wonderful resources to assist you and your family. I would ask.

While I was going through treatment for breast cancer, there were loads of programs from diet and nutrition to support groups to even makeup classes.

I would ask your dad's oncologist. And while I'm on the subject, you should have your dad sign a release to allow you and your mom and whoever else needs to know to be privy to his health care information and advice. He may not be in a position to hear it.

Cat

FBS: Married 20 years, 2 daughters 27 and 24. Divorced by the grace of GOD.
D-Days: 2/23/93; 10/11/97; 3/5/03
Ex & OW Broke up 12-10
"An erection does not count as personal growth."

posts: 33182   ·   registered: Apr. 5th, 2003   ·   location: Ohio
id 8664548
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 musiclovingmom (original poster member #38207) posted at 2:17 PM on Friday, June 4th, 2021

you should have your dad sign a release to allow you and your mom and whoever else needs to know to be privy to his health care information and advice. He may not be in a position to hear it.

Mom will be providing his care at this point. There are 4 of us kids and none live closer than 5 1/2 hours driving (no airport, lol). I’ll talk to her about this next time I can (she has to sneak out of the house to call us with updates, because Dad gets grumpy when he hears her talking about it. Looking back, I think he has known for a while, but didn’t say anything until he knew he would have to get more invasive treatment.

I will see them this weekend. My nephew is getting married. I had a good cry last night after the kids went to bed. I know that seeing him for the first time since he announced his diagnosis is part of the extra stress I am feeling.

posts: 1764   ·   registered: Jan. 21st, 2013
id 8664962
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 musiclovingmom (original poster member #38207) posted at 9:27 PM on Friday, July 9th, 2021

Dad made it through his first full round (big treatment week one, smaller treatment week two, rest week three). During his rest week, he actually went out of town for work (you’d think at 70 he’d take his retirement seriously, but nope). He went in earlier this week to start round two and they sent him home. His white blood cell count was too low. They rescheduled treatment for next week. My mom is trying to stay calm, but I can tell she is freaking out a little. He is supposed to have three full rounds of treatment before his surgery and I know he is frustrated about having to push everything back by a week. I don’t know if we should be worried or if this is expected.

On the good side of things, they didn’t mention his kidney function this week (it had been a little low during week 2). And, he hasn’t had any significant weight loss.

posts: 1764   ·   registered: Jan. 21st, 2013
id 8674063
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WhoTheBleep ( member #49504) posted at 9:05 PM on Sunday, July 11th, 2021

I'm sorry to hear about the white blood cell count. Is there anything he can do to help that along? Supplements or something? Forgive my ignorance, I'm not in a medical profession. I'm suspecting he just has to wait that extra week.

Kidney function being a non-issue is great news. And I'm loving that he is still going strong, working!!, at 70, not letting this slow him down. Although I share your concern and want him to rest, haha. But this shows that he still has the drive in his mind, which is great when battling disease. Mindset is so important.

Hang in there, and keep us posted. Pulling hard for your dad. He has a lot of quality years left at only 70. I hope he keeps fighting like hell, the way he is now. (((Mlm)))

I believe we have two lives: the one we learn with, and the one we live with after that. --The Natural

posts: 4526   ·   registered: Sep. 6th, 2015   ·   location: USA
id 8674611
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tushnurse ( member #21101) posted at 10:37 PM on Sunday, July 11th, 2021

MLM,

It is not unusual for WBCs to take a dip, especially with the first round it can be very shocking to the body.

They can give a medication (injection) to help stimulate the bone marrow to build up those WBCs.

If he needs a week rest he needs it.

Hang in there.

Me: FBSHim: FWSKids: 23 & 27 Married for 32 years now, was 16 at the time.D-Day Sept 26 2008R'd in about 2 years. Old Vet now.

posts: 20380   ·   registered: Oct. 1st, 2008   ·   location: St. Louis
id 8674622
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 musiclovingmom (original poster member #38207) posted at 4:30 AM on Tuesday, July 13th, 2021

Is there anything he can do to help that along?

Mom said they told him to take vitamin C, but he has to be careful because it can cause sores in his mouth. It’s all a balancing act.

Dad does have drive. Loads of that. Always has. He is still walking 3+ miles at 7,000+ feet any day he feels well enough.

I should also mention that he drinks - quite a lot. Which is why Mom and I are so concerned over the kidney function. This week though, he dumped two different drinks down the drain because they didn’t taste good (and they are his regulars - red wine and Jack Daniels on the rocks). He opted for water after that, so hopefully that will help save his kidneys.

posts: 1764   ·   registered: Jan. 21st, 2013
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Countingsheep65 ( member #56000) posted at 8:07 AM on Sunday, July 18th, 2021

Chemo can be tough, I did almost 3 months of it. Definitely got the “chemo brain”. Sores in the mouth, fingers, no neuropathy thank God! Whith four of my treatmentments I had to go in the next day for hydration and a shot to boost my white cells, makes your whole body ache.

Pre and post meds are very important. Just guide him along on his daily journey until he gets through each step. Wishing your dad strength and also to you, I think it’s harder on the people trying to support the sick person.just be there for him.

posts: 452   ·   registered: Nov. 11th, 2016
id 8676522
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 musiclovingmom (original poster member #38207) posted at 12:39 AM on Monday, July 19th, 2021

Dad was able to get his treatment on Thursday this week. Because he has no concept of rest, they traveled to Oklahoma the next day. Today, he started having some pretty severe pain in his lower back on the left side. A call to the oncologist, an ER visit with CAT scan and blood work later, they “think” the pain “might” have been from him passing a kidney stone. He has a prescription for pain meds and instructions to call his oncologist on his way home tomorrow.

posts: 1764   ·   registered: Jan. 21st, 2013
id 8676623
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 musiclovingmom (original poster member #38207) posted at 11:20 PM on Thursday, July 22nd, 2021

Dad went in for his short treatment today. His blood work looked good. The PA thinks he probably did not pass a kidney stone, but rather had muscle spasms that can be related to his chemotherapy. He is home this evening and doesn’t have travel plans for this weekend. Mom says he feels good this afternoon and is doing a few small tasks around the house. If he continues to feel well, the kids and I will leave Sunday afternoon to go see them for a couple of days.

posts: 1764   ·   registered: Jan. 21st, 2013
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BearlyBreathing ( member #55075) posted at 5:30 AM on Friday, July 23rd, 2021

Thank you for the update- seems things are reasonably good at the moment.

Me: BS 57 (49 on d-day)Him: *who cares ;-) *. D-Day 8/15/2016 LTA. Kinda liking my new life :-)

**horrible typist, lots of edits to correct. :-/ **

posts: 6483   ·   registered: Sep. 10th, 2016   ·   location: Northern CA
id 8677683
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 musiclovingmom (original poster member #38207) posted at 6:39 AM on Tuesday, July 27th, 2021

Dad’s treatment went well this past Thursday. His WBC is still low, but not too low. And, it was higher this week than it had been last week. They are giving him medication to help stimulate that.

He is frustrated because his taste is ever-changing. Finding something that he enjoys eating is hard and he seldom enjoys the same thing today that he enjoyed yesterday. Mom is making him smoothies almost every day and packing them full of protein and calorie dense foods. Thankfully, he hasn’t lost much weight (like 2 or 3 pounds). He also has not yet lost his hair.

We are officially halfway through the initial 4 treatments (I thought 3, but I was wrong). I saw him for a bit on Sunday evening and then he left to go to work early this morning. On the phone tonight he sounded great. This is a rest week, so hopefully he will take some time to do that when he gets back to town on Wednesday.

posts: 1764   ·   registered: Jan. 21st, 2013
id 8678773
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 musiclovingmom (original poster member #38207) posted at 12:00 AM on Monday, August 9th, 2021

Dad had the first treatment of his third round on Friday. Yesterday he worked on a friend’s motorcycle and today he’s getting ready to go scout his elk hunting territory. He still hasn’t lost any weight or his hair. He has 3 total treatments left before they do a check and decide if they’ll do more chemo or schedule him for surgery. I keep expecting things to crash, but am so grateful they haven’t.

posts: 1764   ·   registered: Jan. 21st, 2013
id 8682258
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