Going to be a hard slog

[Scrapr ★]

Not a fun subject. 

WoScrapr has been having trouble with  her throat. Almost 2 months now. First we thought stress as her dad was on Hospice and died. Then it got worse until she could not swallow anything. Liquid or soft food. Went in for an endoscope Wednesday. Like a colonoscopy but from the top. The Dr comes out after and says we found a mass. Blocking the entire esophageous. Probable cancer. Took a biopsy and sent it off. 

WoScrapr goes to the ER to get admitted to the hospital. By ambulance no less. She could have walked. But they had a room for her. 3 hours later with bloodwork the Hospitalist comes in and was diplomatic but clear that this is going to be a very hard road. The Hospitalist has hardly finished and the surgeon steps in and starts talking about inserting a feeding tube. We were in shock still. WoScrapr says no feeding tube. We get her upstairs to the Oncology ward

Following am WoScrapr relents on the feeding tube and goes into surgery Thurs afternoon. Nurses on the ward are almost all very nice and helpful. WoScrapr did have a bad day on Saturday as she was told the feeding process is 18 hours/day. She freaked out. Nurse Temple and WoScrapr friends got her calmed down. She was talking no further treatment

Monday we go in for a PET scan. Kim Jong Un to the belly and see what lights up. Praying hard it is localized as the CT scan showed. Then Wed to the Oncologist for a treatment plan. I did a quick look at outcomes for Esophogeal cancer and it's not good. But i can't look anymore. We'll let the data determine where and how we go forward

Wednesday was worst day ever for me...and WoScrapr too. But she has amazing friends and we are going to collect everybody and make sure that they are close to WoScrapr. Please put out your Tibetan prayer flags for Lindy tonight if that is your pleasure

[donkpow]

That's tough. Be strong and keep the faith.

[Longjohn ★]

Praying for you both.

[ChrisL]

Thoughts & prayers to your wife and to you. Hang in there.

[Voodoo Child]

So sorry to hear this. Best wishes for a successful outcome!

[sheep_herder ★]

Very sorry to hear this news.  We'll keep you both in our thoughts and prayers.

[maddmaxx ★]

Best wishes for a full recovery.

[Further]

I'll be pullin for ya  

[BuffJim]

Prayers sent. 

[tybeegb]

Positive vibes sent. 

[Square Wheels]

Virtual hugs.  This is making me cry. 

[2Far ★]

So sorry to hear what the Scraprs are facing. My thoughts and prayers are with you both. 

[petitepedal ★]

  Sending prayers and hugs to both of you..

[jsharr ★]

I will keep your wife your family and your caregivers in my prayers

[TrentonMakes]

I'm so sorry.... wishing strength for both of you.

[Guest]

Sorry to hear this. Will be praying for both of you.

[Parr8hed]

Man, I am sorry to hear that.  Will keep you in my prayers.

[Dirtyhip]

I am so sorry. I don't know how to pray, but I am offering up all the good luck vibes that I can muster.  

[Randomguy]

I am really sorry to hear about all this, how are you holding up?

[Scrapr ★]

1 hour ago, Randomguy said:

I am really sorry to hear about all this, how are you holding up?

I am "not good" I cry several times a day. At the clinic where Lindy is getting her test has a cancer support group. I am going to investigate. Thanks for asking

 

[Ralphie ★]

Sorry, Scrapr.  I hope things get better for her. 

[Green Grass]

1 hour ago, Scrapr said:

I am "not good" I cry several times a day. At the clinic where Lindy is getting her test has a cancer support group. I am going to investigate. Thanks for asking

 

I'm a big believer in support groups.  No one quite understands the way the others in the group do.  Good luck with that.

And, I'm very sorry to hear this about your wife.  All hope is for a positive outcome.

Stay in touch here.

[Kzoo]

Praying for you and WoScrapr.

[LoneWolf]

5 hours ago, Scrapr said:

I am "not good" I cry several times a day. At the clinic where Lindy is getting her test has a cancer support group. I am going to investigate. Thanks for asking

 

A horrible experience is just that.  But not bearing it alone sometimes makes bearing it possible.

I will pray for the both of you and your family.  There's no proper way to tell you how sorry I am.

[LoneWolf]

Scrapr,

 

Any news?  I wanted to ask for an update.

[Scrapr ★]

1 hour ago, Honey Badger said:

Scrapr,

 

Any news?  I wanted to ask for an update.

Honey badger don't care. 

Results last night on the pet scan were clear. No additional cancer beyond the mass. We see the oncologist tommorow. WoScrapr is hoping it is just surgery. No chemo or radiation. But i think surgery is complete remove and re place of the esophagus. 

She came home to MIL place today. Home health was right there to help set up the tube feeding. I picked up the prescriptions. It was over a page long with 2 or 3 of the "big" ones. There was a bit of confusion on the adminstration of the meds. Right syringe etc to get into the j tube. Home health back in the am. 18 hours a day for feeding is rough

Thanks for asking HB

[petitepedal ★]

Hugs...and keep us posted on Surgery etc...

[LoneWolf]

15 minutes ago, Scrapr said:

Honey badger don't care. 

You're welcome.

Honey Badger chooses who Honey Badger wants to care about.  You're on that really small list of decent persons.

Honey Badger learned in life that persons can rock.  It's only people as a whole that suck. Still praying for you, WoScrapr and family.

[Scrapr ★]

So it took me a bit to process our Oncology visit. Doc was well reviewed. So I had high hopes. I was a bit let down by his bedside manner. WoScrapr liked him. Go figure. He answered all our questions honestly. But I felt if we had not asked he would have gone down the list...We are gonna do A/B & C. Bam. GTFO

The plan is possibly another endoscope with a CT scan type thing to better map the tumor (It's not a tumor...Arnold) Then radiation 5 days a week plus chemo once a week. Then rest and either do it again or go to surgery. Total time probably 9-12 months. Surgery is partial removal of the esophagus and likely partial stomach. Then stretch stomach up to reconnect

Dr could not grade the tumor because the original endoscopy could not get past the mass. But it looks as if it has not pierced the esophagus walls. Which is good. It could then go to the lymph glands and other assorted stuff (bad). 

I was waiting for him to tell us prognosis. He didn't so I asked. He must have said aggressive or very aggressive cancer 4 or 5 times in a couple minutes. He never really said x-y years. Which I get. He did say better odds since it's all contained in the esophagus. The 5 year survival rate is bad. But also includes the ones that have metastisized. I looked 1x on internet and will not look again.

WoScrapr is taking this like a champ. She is doing her tube feedings pretty well. Home health found her a backpack that can carry her pump for feeding. So i think she will be able to get out a bit. I brought up renting an apartment closer to her circle of friends. She dismissed it a few days ago. Tonight she was like...well....

We are going to travel over to Bend for a few days. That is her peaceful spot. And the drive will be pretty with some snow in the pass

[LoneWolf]

Still thinking of you and the wife, Scrapr.  We prayed for you tonight, and will continue to do so.

[Longjohn ★]

I’m still praying too. 

[onbike1939]

So sorry to hear of this and I wish you both all the best.

[Parsnip Totin Jack ★]

Cancer sucks. You're not alone in this, it's easy to feel as though you are but you have friends near and far. Reach out and lean on them even if it's difficult to ask. The support group sounds good. See if there is one in Bend as well. Good luck and safe passages.

[smudge ★]

Wow. I hate cancer; it's so mean. I could never work in an oncology office. I don't think I like this oncologist either. Is he at least known to be excellent with his work? 

Ugh, this is such a horrible thing. Hoping for best possible outcome. Hugs to you and WoScrapr.

[Scrapr ★]

Update here. Saw the radiation Doc and she could not be nicer. Took a long time with us.Probably an hour. Answered all...and i mean all our questions. She was answering stuff for chemo, radiation, surgery and explained one of the scans. Doc really connected with Mrs Scrapr. Mrs Scrapr brought one of her friends that is a retired nurse in the Kaiser system. She was taking notes for what Mrs Scrapr calls her Commitee. That is her network. 

You can kind of tell the Oncology Center is a profit center. It was it's own building and parking lot in a bigger center. The furnishings and what not were just a little bit nicer. Nurses were very empathetic and caring. 

Mrs Scrapr starts radiation in about 2 weeks. She got tats so the radiation team could center the beams. Chemo starts a few days after. 

Asked about prognosis and Doc said 50-70% 5 year survival rate. Not great but pretty good I'd guess. I think we are all feeling a little  better tonight.

[Square Wheels]

9 minutes ago, Scrapr said:

You can kind of tell the Oncology Center is a profit center.

Sadly it is a business, and a very, highly, profitable one.  There is more money being made in the care of cancer patients than you can imagine.  Again sadly, the patients best interest is not always their interest.  Fortunately patients are often helped.

I hope things go well for your wife, I continue to think positive thoughts for you and her.

[petitepedal ★]

Sending more hugs your way...

[Further]

Hang in there buddy. I know its a tough row to hoe, but we're all pullin for ya.

[Rattlecan ★]

Very sorry to read the news. I sincerely hope for the best possible outcome. stay strong.

[Scrapr ★]

Little update here. WoScrapr has had about 17-18 radiations (5x/wk) and 4 chemo (1x/wk). The tumor has shrunk enough that she is getting food down through the mouth. Has not done the tube feeding for a few days. Yay! I am pumping her (force feeding???) milkshakes. She finishes radiation & chemo next week. Then she is going to make a run to our home in Bend. She will need to rest for about 6 weeks so the esophageous can heal for the surgery. She has gained a few lbs so that is good. She was down about 15 (?) and did not have that much to lose. We had a really good visit with friends on Christmas night. She was laughing so hard her tube feeding dangle was hurting. That was my best Christmas present. I am feeling much more hopeful. Saw a cancer counselor a couple times. Helped a little. But I have "issues" so will take me a while to work them out

Mom and Dad are both in Memory care and recently on hospice watch. Mom is near. She is breathing but not "with us". Mom is not in pain, but not taking any food or water. Few days would be my guess. Mom had some mini strokes which paralyzed each side of her body.  It was their 64th anniversary a couple days before Christmas. So us kids  talked about that. They had no memory of it. Watching my FIL die at home in September is helping me through the stages w/Mom. About a month ago Mom was crying because she said she had to go on a trip overseas alone. We think it was a premonition. Today dad brought up his sister who he has not talked about in over 25 years. Another premonition. This stuff is weird. 

I don't know if anyone has been in the memory care units. Sad , heartbreaking but kind of funny too. If you leave the door open to the hall you will have visitors. People just wander in. I try to gently redirect them out. The rooms are arranged in a circle so there is no getting lost. Just keep going and you will find your room! So it is locked down. You have to enter a code to get in or out. Half the time i forget the code and have a little anxiety about getting out. LOL 

The staff is super wonderful. Caring and gentle. They call everyone Momma or papa is they don't know their names. I had a really nice talk with a resident named Barbara. She is blind. So we chatted about that and her son that is taking care of her. She really was a nice woman. 

[sheep_herder ★]

Sure glad to hear your wife is making progress and can head home for a bit.  Sorry you have so much going on at once, and we will continue to keep you all in our thoughts and prayers.  It was really nice you and your wife were surrounded by friends at Christmas and were able to enjoy the day.  I understand how meaningful this interaction can be with your situation during the holidays.  Hopefully talking with others will help; it usually does.  Take care and travel safely.

[Parr8hed]

You sure have a lot on your plate bud.  Glad to hear the positive news from Christmas.  One day at a time.  

[Road Runner]

6 hours ago, Scrapr said:

I am feeling much more hopeful.

Great to hear this.

[Kzoo]

Sorry to hear about your parents.  We've been through memory units and aging and hospice several times in the last few years - just not all at the same time.  It's great to hear that WoScrapr is starting to feel better.  Prayers for healing and peace in the ScraprFamily

[petitepedal ★]

Sending you lots of hugs to cope with all of this..and keeping the prayers going.

[smudge ★]

So very glad to hear WoScrapr is progressing well. I hope the progress continues.

MIL went through the dimentia  unit/life a couple years ago and passed this past July. Your experience with your mother's care sounds a lot like my MIL. HoSmudge had to be aware of codes for entrance and exit too, and of course the occasional "visitor."     

[Scrapr ★]

So you may not want an update but I'm giving it to you anyway

WoScrapr finished her radiation & chemo first part of January. She had been told she was not going to lose her hair because light dose chemo. And she did not lose it....until about 2 weeks after finishing. She called me sobbing. She has not lost all of it, but definite thinning the head.

About 2 weeks ago we had a little scare. She steps out of the shower and yells at me "My feeding tube fell out!!!!. There is maybe 10-12 inches (reported) of the tube in her belly and it was coming out more & more. We were in Bend so grabbed the dogs, a bag and made a run for the hospital in Portland. 3 hours later we are in ER. It took a while but the tube had not actually come out. The stitch holding the tube to the skin broke loose. Surgeon gently manipulated it back in & restitched it to hold it in place. Whew. Thought we were headed to the surgery room. 

She got another scan this week and....it came back completely clean. No cancer apparent. My jaw dropped when we heard that. Un freaking believable. She still has to do surgery. We meet w/the surgeon next week and get in the que. WoScrapr likes him a lot. I think because he encouraged her early on to use medical MJ for pain. She did and it did. 

On a sadder note Penny the Red had to cross the Rainbow Bridge today. She was a great dog. We were looking at pictures of her early on and laughing. The vet was crying alongside us. They had seen Penny a lot the last couple years. Penny loved going to the Vet. She would greet all the folks & dogs coming in/out. Here is a picture of her pure joy

 

 

 

2011-07-12 17.42.05.jpg.pdf

[Wilbur ★]

I can't believe I missed all of this.  I am sorry you have so much on your plate scrapr.   Wishing only the best and strength for you as you deal with it.  Very best to woscrapr.  Very sorry about Penny the Red.  

[Kirby]

I'm with Wilbur - I'm not sure how I missed all this in November.  But I was glad to realize it was from a few months ago and that WoScrapr has made good progress and I'm thrilled about the latest scan!! 

So sorry to hear about Penny.  Our animal friends are especially dear in times of stress or sadness, so I'm sure she was a comfort to you during this time.  I'm sure Penny was well loved and was lucky to have such good people.

[shootingstar]

I'm sorry how tough it's been for her and you trying to support her. Hang in there together..