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F Cancer, chapter a jillion and one

Brisketexan

By Brisketexan
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Not that Bob

Not that Bob 739

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1 hour ago, Spur08 said:

We got some pretty bad news this week.

One of our closest friends, the matron of honor in our wedding, was diagnosed with breast cancer at the age of 33. I suppose she was lucky in that she found out by getting a bruise checked out from her daughter kicking her in the boob while playing. A CT flagged a couple of spots in her spine so she's getting a MRI to verify what they are. She starts chemo next week, following by surgery and radiation.

We have a very closeknit group of about 6 or so couples. We are banding together to provide car packages and what not throughout her treatment. All of us are local DFW folk except for the friend getting treatment, who has recently relocated to Austin with her family.

My question to this group is - what are some good items to include in care packages? Of course, there are restaurant gift cards and the like but I'm wondering what other things we may not be thinking of. Both of there families are with them right now so we can some time to organize for the following months.

If it works with the personalities involved, have someone go to the appointments with her, and take notes and ask questions. Almost every appointment will have much detailed and confusing information that the patient can't absorb. Even if the only information gleaned is the date and time of the next appointment it will be helpful. The health care worker says, "We are going to start an IV and give the latest therapy to you. You need to let me know if you start to get dizzy. When we finish, you may have some bruising, which is normal unless it continues to spread. If it spreads call the office immediately. Your next visit is in one week. Make an appointment on the way out." What the patient hears is, "Fuck! I have cancer. Fuck! I have cancer." A friend with them can take notes on what the patient needs to do, make the follow up appointment, and remind the patient of the next visit. 

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Not that Bob

Not that Bob 739

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...and if such is available, get a social worker involved. Most hospitals have a social work department. Most people think of social work as "charity", which in some cases it is, but in addition a social worker will know what services (such as house cleaning, shopping, etc.) are available, and how to get the patient qualified. As in the medical appointment, take notes from the social work appointment. This appointment can also be confusing. What I find helpful is to say, "I am really on overload right now. Please tell me what my one next step is, who I need to talk to, and what the phone number is."

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Johnny Sack

Johnny Sack 8397

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Damn dude.  Sorry.  Hope the treatments keep working.  I hate cancer.  It has affected my family. 

And going to a funeral today of a friend who was diagnosed with stage iv lung cancer last February.  45 years old with two little girls.  RIP Wade Calvert.  One of the good Ags.  

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lemonlime

lemonlime 5503

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On 12/15/2018 at 10:28 AM, Not that Bob said:

If it works with the personalities involved, have someone go to the appointments with her, and take notes and ask questions. Almost every appointment will have much detailed and confusing information that the patient can't absorb. Even if the only information gleaned is the date and time of the next appointment it will be helpful. The health care worker says, "We are going to start an IV and give the latest therapy to you. You need to let me know if you start to get dizzy. When we finish, you may have some bruising, which is normal unless it continues to spread. If it spreads call the office immediately. Your next visit is in one week. Make an appointment on the way out." What the patient hears is, "Fuck! I have cancer. Fuck! I have cancer." A friend with them can take notes on what the patient needs to do, make the follow up appointment, and remind the patient of the next visit. 

This is great advice.  

Sorry you're dealing with this, Brisket.

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Spur08

Spur08 382

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On 12/15/2018 at 7:58 AM, Spur08 said:

We got some pretty bad news this week.

One of our closest friends, the matron of honor in our wedding, was diagnosed with breast cancer at the age of 33. I suppose she was lucky in that she found out by getting a bruise checked out from her daughter kicking her in the boob while playing. A CT flagged a couple of spots in her spine so she's getting a MRI to verify what they are. She starts chemo next week, following by surgery and radiation.

We have a very closeknit group of about 6 or so couples. We are banding together to provide car packages and what not throughout her treatment. All of us are local DFW folk except for the friend getting treatment, who has recently relocated to Austin with her family.

My question to this group is - what are some good items to include in care packages? Of course, there are restaurant gift cards and the like but I'm wondering what other things we may not be thinking of. Both of there families are with them right now so we can some time to organize for the following months.

So a lot has changed in the last few weeks.  The spinal lesions did verify that our friend has Stage 4 METs.  Her oncologist in Round Rock told her that they didn't have a clinical trial for her and recommended she go to MDA.  Jump to this week, a PET scan at MDA showed additional lesions in her pelvis, ribs, and lymph nodes around her heart.  She has started Ibrance treatment this week and will have an appt with a dietitian at MDA in a few weeks. 

 

It's like an emotional nuclear bomb with each update given.  I'm concerned about her, I'm concerned about her families financial stability, I'm concerned about her husband and their 2 girls.  My wife and I are the go-betweens between all of our friends due to our close relationship with her and their fear/concern of how to react.  I suppose we all feels paralyzed with all of this news and just don't know what steps to take.

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HoustonHorn

HoustonHorn 1062

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Tough to read that and sorry to hear it. My dad died in 2010 from cancer. It is a very tough thing to watch

My wife just found out a coworker, around 40, was diagnosed with stage 4 colon cancer.

Can anyone suggest an inspirational book to send her? Something with daily quotes. She's Christian.

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Not that Bob

Not that Bob 739

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11 hours ago, Spur08 said:

So a lot has changed in the last few weeks.  The spinal lesions did verify that our friend has Stage 4 METs.  Her oncologist in Round Rock told her that they didn't have a clinical trial for her and recommended she go to MDA.  Jump to this week, a PET scan at MDA showed additional lesions in her pelvis, ribs, and lymph nodes around her heart.  She has started Ibrance treatment this week and will have an appt with a dietitian at MDA in a few weeks. 

 

It's like an emotional nuclear bomb with each update given.  I'm concerned about her, I'm concerned about her families financial stability, I'm concerned about her husband and their 2 girls.  My wife and I are the go-betweens between all of our friends due to our close relationship with her and their fear/concern of how to react.  I suppose we all feels paralyzed with all of this news and just don't know what steps to take.

Spur, you can't afford to be paralyzed. It may not be time, yet, but if there is not a miracle of major proportion, and soon, you need to help this family make end of life plans. I had to do this with a dear friend. The initial "do you know where your will is?" was met with a bit of shock, but soon the family was glad that I was "making a list" for them. Grim list, but it had to be done. As above, they can only hear, "Fuck! I've got cancer! Fuck! I've got cancer!". They can't think about future needs when the immediate needs are so overwhelming. If you can, and if it's time, you have to be the end of life planner for them. At least help them make a list of where things are. Where is the will? Where is the life insurance policy and what is the name and phone number of the agent.  Who can be contacted right now to help with the kids? Are there funeral plans? Has it been paid for? Ask if there are people she wants to see, and contact them for her. You can't tell them what to say, or how to act, but you can give her the chance to see people she wants to see. 

They may freak out and tell you to butt out. If they do, abide by their wishes, but make the simple statement "I am here to help with any of this if you want." It may not be time yet, but all the Stage 4 stuff is not encouraging.  

My 2 cents in your most difficult situation.

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Not that Bob

Not that Bob 739

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4 hours ago, HoustonHorn said:

Tough to read that and sorry to hear it. My dad died in 2010 from cancer. It is a very tough thing to watch

My wife just found out a coworker, around 40, was diagnosed with stage 4 colon cancer.

Can anyone suggest an inspirational book to send her? Something with daily quotes. She's Christian.
 

C. S. Lewis can be comforting, especially for Christians. The Problem of Pain may be appropriate now. There is a boxed set entitled "Six by Lewis" or some variation of that which has 6 of his best books. It's probably out of print but can probably be found used on ebay...actually I just looked on Amazon. There is a used set for 12 bucks. There is another for135 but I don't know why one is priced so much more than the other. Get the cheap one. Edit, Six by Lewis included The Problem of Pain. For 12 bucks you can't go wrong.

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jimmyjazz

jimmyjazz 45978

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Local singer-songwriter and former Jam & Jelly Girl (Dino Lee) Kim Miller had a bad headache the other day.  Went to the ER, they did a scan . . . brain tumor.  She had surgery today.   I don't really know her that well, but I know her ex and she and I are connected via social media.  It's a weird thing, I don't know how to ask how she's doing or what I can do.  My dad died of the bad brain cancer, but there are some that are benign, so I just don't know.

Cancer fucking sucks.

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HoustonHorn

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On 1/11/2019 at 11:12 PM, Not that Bob said:

C. S. Lewis can be comforting, especially for Christians. The Problem of Pain may be appropriate now. There is a boxed set entitled "Six by Lewis" or some variation of that which has 6 of his best books. It's probably out of print but can probably be found used on ebay...actually I just looked on Amazon. There is a used set for 12 bucks. There is another for135 but I don't know why one is priced so much more than the other. Get the cheap one. Edit, Six by Lewis included The Problem of Pain. For 12 bucks you can't go wrong.

Thank you, will check it out.

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Newdoc

Newdoc 3448

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Cancer sucks at any age but before 40 is a serious kick in the groin. It never gets easier no matter how many times you break the news to patients and families.

Kudos to you lay people jumping in and helping your friends out. Diagnoses like these can be isolating so make sure they know you are there waiting to help even in small ways.

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lemonlime

lemonlime 5503

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On 1/11/2019 at 11:55 AM, Spur08 said:

So a lot has changed in the last few weeks.  The spinal lesions did verify that our friend has Stage 4 METs.  Her oncologist in Round Rock told her that they didn't have a clinical trial for her and recommended she go to MDA.  Jump to this week, a PET scan at MDA showed additional lesions in her pelvis, ribs, and lymph nodes around her heart.  She has started Ibrance treatment this week and will have an appt with a dietitian at MDA in a few weeks. 

 

It's like an emotional nuclear bomb with each update given.  I'm concerned about her, I'm concerned about her families financial stability, I'm concerned about her husband and their 2 girls.  My wife and I are the go-betweens between all of our friends due to our close relationship with her and their fear/concern of how to react.  I suppose we all feels paralyzed with all of this news and just don't know what steps to take.

That's tough to hear, and so young.  My father recently died of pancreatic cancer, and after his diagnosis some of the biggest help was with the day-to-day stuff that was tough to get to. 

My father lived about an hour away from me, and probably the biggest help  for me during that time was a friend who offered to take care of my pets.  To not have to run back and forth or worry about paying a pet sitter for weeks on end was a huge, huge help that I will always be grateful for.  Also, just the people who were there--the friends and family who stopped by with wine or to take me for a walk or drinks, at times when I could get away.

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Rip76

Rip76 4943

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https://m.jpost.com/HEALTH-SCIENCE/A-cure-for-cancer-Israeli-scientists-say-they-think-they-found-one-578939

A small team of Israeli scientists think they might have found the first complete cure for cancer.

“We believe we will offer in a year’s time a complete cure for cancer,” said Dan Aridor, of a new treatment being developed by his company, Accelerated Evolution Biotechnologies Ltd.

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bluto

bluto 4932

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THERE IS HOPE! I feel like bernadette peters in the jerk when she pulls the makeup mask off to reveal navin johnson... "Geez! This shit really worked?!"

Background: 68yo dad diagnosed with stage 4 lung cancer in late Oct from a reoccurrence of a very nasty sarcoma in his leg. On dialysis, Lost his kidneys due to chemo. Lost over 120 lbs. Bedridden and docs wouldn't give a time prognosis, just to cherish the holiday moments essentially but they would take a shot in the dark and give him Keytruda (immunotherapy drug) despite there not being hardly any record of it working on this particular cancer. 

 

It worked... scans today revealed only a tiny remnant of a tumor, it killed everything else off. They don't really know how to proceed as it's basically unprecedented, especially given the kidney/dialysis situation. 

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High Plains Drifter

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On 1/11/2019 at 10:55 AM, Spur08 said:

So a lot has changed in the last few weeks.  The spinal lesions did verify that our friend has Stage 4 METs.  Her oncologist in Round Rock told her that they didn't have a clinical trial for her and recommended she go to MDA.  Jump to this week, a PET scan at MDA showed additional lesions in her pelvis, ribs, and lymph nodes around her heart.  She has started Ibrance treatment this week and will have an appt with a dietitian at MDA in a few weeks. 

 

It's like an emotional nuclear bomb with each update given.  I'm concerned about her, I'm concerned about her families financial stability, I'm concerned about her husband and their 2 girls.  My wife and I are the go-betweens between all of our friends due to our close relationship with her and their fear/concern of how to react.  I suppose we all feels paralyzed with all of this news and just don't know what steps to take.

Man that's tough. Be strong for them.

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Brisketexan

Brisketexan 105158

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33 minutes ago, bluto said:

THERE IS HOPE! I feel like bernadette peters in the jerk when she pulls the makeup mask off to reveal navin johnson... "Geez! This shit really worked?!"

Background: 68yo dad diagnosed with stage 4 lung cancer in late Oct from a reoccurrence of a very nasty sarcoma in his leg. On dialysis, Lost his kidneys due to chemo. Lost over 120 lbs. Bedridden and docs wouldn't give a time prognosis, just to cherish the holiday moments essentially but they would take a shot in the dark and give him Keytruda (immunotherapy drug) despite there not being hardly any record of it working on this particular cancer. 

 

It worked... scans today revealed only a tiny remnant of a tumor, it killed everything else off. They don't really know how to proceed as it's basically unprecedented, especially given the kidney/dialysis situation. 

Keytruda is what my mom is on.

I don't know what kind of voodoo is behind that shit, but I wholeheartedly APPROVE.  Glad your dad is seeing great results.  Seriously, this shit is as close to sorcery as I've seen in my lifetime -- it's amazing.  I hope it continues being effective.

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bluto

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13 minutes ago, Brisketexan said:

Keytruda is what my mom is on.

I don't know what kind of voodoo is behind that shit, but I wholeheartedly APPROVE.  Glad your dad is seeing great results.  Seriously, this shit is as close to sorcery as I've seen in my lifetime -- it's amazing.  I hope it continues being effective.

Much appreciated and your moms reaction to it sounds similar to what we saw. Hopefully with her kidneys intact she'll have an even better reaction. 

 

Check out that book I mentioned "The Breakthrough" by Charles Graeber. Fascinating read that gives a very digestible background on what the voodoo is, how it came to be, and the possible future of it. Can't recommend it enough

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Wiler77

Wiler77 1566

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My Aunt died over the weekend of Pancreatic cancer.  Diagnosed 4 years ago @ Stage 4.  A bit of a miracle she lasted as long as she did.  The kick in the teeth was she was diagnosed 3 months after burying my uncle, who died of Mesothelioma.  He lasted 3 years.

It got me thinking that their kids (my cousins) have spent the last 7 years of their life caring for a parent they knew had a death sentence.  Fucking brutal.  They are ~33 and 35 now, so that is prime years of their life likely spent in sadness.  I think they met both of their spouses around the same time my uncle was diagnosed, so that's been all they know.

My hope is they can start to live the life they haven't really had a chance to the past 7 years.

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Dick Tremayne

Dick Tremayne 103

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Five years ago my dad was diagnosed with pancreatic cancer and died last January at the age of 58. Two weeks ago my 18 year old niece was having headaches and a tumor was found on her MRI. Earlier this week she had a tumor removed at MD Anderson and it was diagnosed as glioblastoma. So while she's getting ready for her senior prom and graduation she'll be going through radiation treatments and chemo. Yesterday my mother in law was diagnosed with an aggressive form of breast cancer. 

 

So yeah, fuck cancer.

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Hate

Hate 20115

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Fuck cancer indeed. My 2-time cancer surviving MIL just found out she has a lump on her thyroid that her doctors are “concerned” about. She may have surgery, but I’d be shocked if she did chemo again. She turns 79 on Saturday. This was another kick in the junk our family didn’t need. Thoughts for all of you other families going through this as well. Cancer can’t be fucked enough.

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Lazarus Bocanegra

Lazarus Bocanegra 305

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10 minutes ago, Dick Tremayne said:

Five years ago my dad was diagnosed with pancreatic cancer and died last January at the age of 58. Two weeks ago my 18 year old niece was having headaches and a tumor was found on her MRI. Earlier this week she had a tumor removed at MD Anderson and it was diagnosed as glioblastoma. So while she's getting ready for her senior prom and graduation she'll be going through radiation treatments and chemo. Yesterday my mother in law was diagnosed with an aggressive form of breast cancer. 

 

So yeah, fuck cancer.

man, this is terrible.  Sorry to hear.  Is your niece local to Houston?  www.cancerfamilies.org is a good resource here 

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Dick Tremayne

Dick Tremayne 103

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3 minutes ago, Lazarus Bocanegra said:

man, this is terrible.  Sorry to hear.  Is your niece local to Houston?  www.cancerfamilies.org is a good resource here 

Thank you! No, she lives in Oklahoma(I know...), but we were so happy with the care that my dad received at MD Anderson, that there was no other place my sister and brother in law considered for her. Honestly, I've been so amazed by her through this whole process. She's been so brave and positive. She's moving right along with her plans for college in the fall and not even considering the possibility that it's going to beat her. It's amazing how going through these things can bring so much inspiration with the pain.

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Brisketexan

Brisketexan 105158

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42 minutes ago, CHIEF said:

Brisket, not sure how I missed this, but tremendously happy for your mom. Eldon, from the tailgate died Feb. 2nd. Sharon and I went to his funeral.

 

CHIEF

Fuck.  Man.  Seriously, that breaks my heart.  He was such a good guy.  Just a good, kind, and decent guy.  I'm glad y'all went to the services.  Hell, I"m sorry I didn't know.  Been dealing with a lot of death in our circle this last month.  It's been pretty goddamned brutal, and a series of harsh reminders of how cruel this damned universe can be.

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Lazarus Bocanegra

Lazarus Bocanegra 305

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2 hours ago, Dick Tremayne said:

Thank you! No, she lives in Oklahoma(I know...), but we were so happy with the care that my dad received at MD Anderson, that there was no other place my sister and brother in law considered for her. Honestly, I've been so amazed by her through this whole process. She's been so brave and positive. She's moving right along with her plans for college in the fall and not even considering the possibility that it's going to beat her. It's amazing how going through these things can bring so much inspiration with the pain.

definitely have them reach out to ASCF.  They have housing near the medical center available, as well as cancer navigators.  Missy Bellinger Trent, the Exec. Director, knows MD Anderson better than anyone.  They are a wonderful organization.  I am happy to help with an introduction off-line 

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Brisketexan

Brisketexan 105158

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Well, shit.  We're a year out from my original post.

They Keytruda worked great.  Until it didn't.  Last couple of scans have shown significant tumor re-growth.  Docs seem to think that she won't get any further results from the Keytruda.  And they don't really understand all the ins and outs, or why it would stop working.

So, looking at chemo options.  Seems that the realistic goal is to try and buy her 1-2 more good years.  And when the price of treatment is greater than the benefits (physically), she'll know when to say when.  My folks are feeling pretty vulnerable and scared.  They shared all of their anxieties, from the big to the little. As I sat in their living room last night, doing what I do -- calmly discussing the logistics, and how we tackle problems and go to experts (we're having an eldercare specialist come in to talk about every aspect of life management for folks in decline) -- I was in my zone.  It's what I do -- solve problems, take people's worries off of their shoulders.

But goddamn, it didn't feel right.

And my old man isn't doing great.  The news has thrown him for a loop, and he's had some health issues push him into more of a decline than he'd been in.  He's 82.  I wouldn't be surprised if they both passed within a few months of each other.

I was hoping they'd see both kids graduate college.  Now, I'm hoping they make it a year and a half, and get to see the boy graduate high school.

After our conversation, it was late, and we needed to grab dinner (too late to cook).  They suggested that we all go together, so we picked up the boy at home and went to Cabo Bob's (the boy had been wanting to introduce them to it soon).  As we're standing in line, trying to explain the menu to them, the male half of a young couple in front of us turned around - "First time here? I can help, I'm a bit of an expert," chuckling to himself.  He walked them through how the ordering works, made suggestions, etc.  

We check out, and we're headed to the drink station.  My folks already sat down with their orders.  As their filling their cups, the man leans over to my son and tells him "it's really cool that you're getting time like this with your grandparents.  Enjoy it."  He came to the table grinning, telling us about the conversation.  Damn near broke me, right there.

Life rolls on.  It will roll on without some of us.  That's the way it goes.  And we'll just roll together until then.

Edited by Brisketexan
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bluto

bluto 4932

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Not to steal brisket’s loquacious thunder : )

 

Similar story with keytruda being a wonder drug then discovering a lime size tumor in my pops right cerebellum. Removed the tumor and released from rehab with 6 weeks (unreal) and back to semi normal life, now waiting on next round of scans to see where to attack it. This has been the second stage 4 death warrant overcome (started leg, lungs, brain)

 

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