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der Maus Update

cmb's picture
cmb
Posts: 377
Joined: Jan 2018

der Maus asked me to post this update on her behalf. She'd been feeling bad for quite a while and was admitted to the hospital about 10 days ago. Her persistent tumor was blocking bile ducts and the duodenum, so her systems were backed up – which is why she felt so terrible.

The first attempt at bile duct stenting was unsuccessful. So she had two more surgeries last week. Stents were both successful this time.

She came home on Friday but is barely able to move right now. She's irritated that they released her when they did since she could have used more recovery time in the hospital. Fortunately she has someone staying with her this week – a good thing since the home health process isn't up to par yet.

I'm sure she'll share more information when she feels up to posting again, but I hope this brief update relieves some of the worry we have when one of our "regulars" doesn't post for a while.

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1555
Joined: Jun 2015

Thanks very much for the update. It truly does help those of us that miss her!

Love and Hugs,

Cindi

Northwoodsgirl
Posts: 546
Joined: Oct 2009

Thanks CMB for the update on der Maus. I have been wondering how she was doing. Gosh it sounds like she has suffered a lot with the blockages and stent placements. Fighting cancer is unbearably difficult in so many ways. I am keeping her and all of us “sisters” in my prayers. Hospitals discharge too many people too early in my opinion and then they wonder why their 30 day readmission rates are so high. der Maus will never be alone because we are here for her in spirit. I don’t know where der Maus lives but I would stay with her to help her...seriously....no one should be discharged from the hospital to be alone....it’s just not right...

Lori

Donna Faye's picture
Donna Faye
Posts: 255
Joined: Jan 2017

So sorry to hear der Maus is not feeling well and the too soon discharge is terrible. We all know some of the ups and downs of cancer and its long term impact. Hoping for better days ahead as she gains strength and feels better. Know we are all pulling for you to feel good, soon.

Forherself's picture
Forherself
Posts: 231
Joined: Jan 2019

Prayers that she finds relief after this surgery.   She is so on top of all her treatments.     Thank you for the update. Huggs to Bobbi.  YOu are an inspiration.

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

It was 10 minutes after I saw this before I could bring myself to open it. I feel so helpless when I can't help in person. der Maus, if you are reading, please know my thoughts are with you. Also I'm sending gratitude to the person staying with you. 

Anonymous user (not verified)

count me in with the prayers. It was so upsetting and sad to read this that one of our "sisters" has so much pain.  I hope we hear from her soon!

She is in my thoughts as you all are!

 

Sharon

Fridays Child
Posts: 74
Joined: Jul 2019

So sorry to hear she's had such a rough time and hope and pray she is better quickly now.

EZLiving66's picture
EZLiving66
Posts: 1358
Joined: Oct 2015

It's just so sad that she has had to suffer so much. I know this whole opioid crisis is real but so many of us need those pain killer to have them! Insurance companies dictate how long we can be hospitalized even though our doctors say different. Bobbi, I am so sorry you are having to go through this. I hope these new stents will work and won't cause anymore pain! Love you!!

Love,

Eldri

Anonymous user (not verified)

I don't think that people like us should have to suffer because of opiod addiction.  I was able to get Vicodin for my migraines and hysterectomy pain and complications.  It helped a great deal.  Now, you just have to fight with a doctor to get it.

I also have to fight to get benzo (Klonopin) and I can't take it anymore.  They just won't prescribe it.  What are we supposed to do?  Not fair.Money Mouth

oldbeauty
Posts: 194
Joined: May 2012

Bobbi, I am sorry to learn of your recent hospitalization.  I hope you are resting more comfortably now with a successful surgery to relieve the blockage.  So glad to hear you have help at home for your recovery.  Please know that I am joined by so many others who "know" you from here, and we are all pulling for you to regain your strength and come back to us here.  Best wishes, Oldbeauty

Feelingalone74
Posts: 236
Joined: Jun 2019

So sorry to hear and read when one is going through so much.Sending thoughts and prayers to der maus!

CheeseQueen57's picture
CheeseQueen57
Posts: 815
Joined: Feb 2016

Hang in there Bobbi!

MoeKay
Posts: 217
Joined: Feb 2004

So sorry to hear this news.  Hope you are feeling better day by day, Bobbi.  Between your experience and Cheese's, I'm really starting to dislike hearing the word "stent" more and more!

barnyardgal
Posts: 222
Joined: Oct 2017

I am so sorry Bobbi. Hope you start to feel better soon!

SF73
Posts: 276
Joined: Oct 2017

Wishing you all the best. I am so sorry to hear that you were in pain. Glad that the second attempt was successful. Hope you are resting comfortably at home and getting stronger every day. I will be thinking of you. Thanks for letting us know, cmb.

MAbound
Posts: 874
Joined: Jun 2016

You and Cheese...it's always something for you two this year!

While it may feel like you were discharged too early, I think you are still better off at home to recover. Between understaffing and exotic, drug-resistant germs, my philosophy is that if you don't have an IV, it's better to get out of Dodge as quick as you can even if you have a lot of recovery to go yet.

Recovery at home will be a lot safer as long as you are not alone until you are little further along in getting past the worst of it. Hopefully, they did some discharge planning before booting you out and you can call in some home health care help if you need it. If not, you should call your doctor and see if he can't get something like that going for you if you have concerns about how you are going to manage after your friend leaves. Insurance does pay for that, at least when it's set up as part of being discharged. It's a lot cheaper for them than you needing to be re-admitted.

You and I arrived on this board around the same time with very similar circumstances and pathology. There are times that I feel very bad that our response to treatment ended up being so different from each other. It just seems so unfair, hard to understand, and difficult to live with as you continue to have things go wrong for you....and yet you keep doing what you need to do. I don't see you as a guinea pig. I see you as a trailblazer and inspirator (is that a word?). We are all better for your being here, so I hope you can draw from the strength that we are all trying to send your way. Feel better soon!

 

janaes
Posts: 776
Joined: May 2016

These hard times for our good friends are hard to read. I wish no one had to go through this stuff.

I hope Der Maus that you recover quickly.

My prayers ar with you.

Feelingalone74
Posts: 236
Joined: Jun 2019

Der Maus, Sorry that you are going through all of this! Thinking of you and wishing you a speedy recovery! sending positive vibes!

Kaleena's picture
Kaleena
Posts: 1976
Joined: Nov 2009

Thanks CMB for updating us.   Please let Bobbie know we are thinking of her.   I’m sorry she has been having so many issues.   Saying prayers.

Love and hugs

Kathleen

Armywife's picture
Armywife
Posts: 320
Joined: Feb 2018

I haven't had access to my computer in 12 days, and I am so sorry to read this.  Bobbi, P and I are praying hard for you, friend.  Please write when you can.  Much love.  

CheeseQueen57's picture
CheeseQueen57
Posts: 815
Joined: Feb 2016

Our dear Bobbi is having a very slow recovery. Extra prayers needed. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2597
Joined: Mar 2013

Ditto those thoughts.

MAbound
Posts: 874
Joined: Jun 2016

Thanks for the update, CQ.

I think of her daily and it's really hard to think of her struggling to get to the other side of what's she's been through. She's really gotten a bum deal through all of this despite our prayers and her perseverence.

I'm not going to give up hoping until she's says she's had enough. I imagine myself in her shoes and can only hope to have the strength that she has shown. We all want her to keep at it, but for her sake if that's what she wants, not ours. I'm praying for her recovery, but most of all I am praying that whatever pain she is dealing with gets taken care of. It's hard to keep going when there is constant pain involved. 

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

Thanks for posting this, CheeseQueen. I'm hanging in there but "improvement" doesn't seem to be a word my body wants to hear right now. I've been sleeping most of the day (after a full sleep at night), but as soon as I'm up to it wlll post a better update. Hugs and thanks to all for your support and kind words, derMuas

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

it's good to "hear" your own distinctive voice. Thank you for using some of your precious energy to communicate with us. 

mamlicsw's picture
mamlicsw
Posts: 30
Joined: May 2019

So sorry for all you are going through and sending you healing thoughts.  Mary Ann

EZLiving66's picture
EZLiving66
Posts: 1358
Joined: Oct 2015

Again, my friend, I am sorry your improvement is not coming faster. Hopefully, you're not in a lot of pain! (((Bobbi)))

Love,

Eldri

Fridays Child
Posts: 74
Joined: Jul 2019

Hope you're feeling better soon!

Feelingalone74
Posts: 236
Joined: Jun 2019

Thinking of u derMaus! Sending positive vibes and wishing u well!

Feelingalone74
Posts: 236
Joined: Jun 2019

So sorry that you're going through this Bobby and I'm wishing you well everyday!

Warmly Michelle 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1555
Joined: Jun 2015

Feel better Bobbi. Thinking of you.

Fridays Child
Posts: 74
Joined: Jul 2019

Praying for a faster recovery and good healing rest.

zsazsa1
Posts: 344
Joined: Oct 2018

Just adding to the notes from so many of us here, who have found support in each other.  I'm hoping that the stents are helping, and that you are comfortable, and pain-free.

Donna Faye's picture
Donna Faye
Posts: 255
Joined: Jan 2017

Try and stay strong and rest as needed. Hoping to hear good things soon.

Jairoldi's picture
Jairoldi
Posts: 214
Joined: May 2017

I join the others with my prayers and well wishes.

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

Prayers Der Maus!

jan9wils's picture
jan9wils
Posts: 69
Joined: Mar 2017

Sorry to hear this derMaus. I am praying for your recovery and hope you are feeling some relief soon. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2597
Joined: Mar 2013

B, you are in my thoughts.

CheeseQueen57's picture
CheeseQueen57
Posts: 815
Joined: Feb 2016

I heard from our friend Bobbi. She just returned home from City of Hope for a surgical consult and still feeling pretty rough. She‘s still in a lot of pain and highly anemic and is anticipating getting a transfusion.  She will post an update when she’s able. I told her we are all concerned. 

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

thank you for letting us know. I hope she has someone helping her out. 

Northwoodsgirl
Posts: 546
Joined: Oct 2009

Thanks for the update on derMaus. Keeping her in my prayers. She has been through so much. That anemia is very difficult but hopefully iron infusion or blood transfusion and iron pills will get her counts up.

If you have ever had severe anemia it is unbelievable how fatigued one is all the time despite sleeping. The transferrin levels and hemoglobin go hand in hand with our ability to actually be able to store and utilize iron and oxygen in our bodies. I can imagine how derMaus feels.  The smallest thing like just walking from the bed to bathroom totally exhausts a person who has severe anemia. Keeping her in my prayers....

Lori

Donna Faye's picture
Donna Faye
Posts: 255
Joined: Jan 2017

Bobbi, stay strong. Pulling for you to feel better soon.

barnyardgal
Posts: 222
Joined: Oct 2017

Praying and thinking of you Bobbi. 

Thank you for updating us ,Cheese.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1555
Joined: Jun 2015

Thanks for the update Cheese. I wish there was something  to make her immediately better. I have been thinking about her way too much!Love and Hugs, Cindi

 

MAbound
Posts: 874
Joined: Jun 2016

I just don't like hearing what we're hearing is going on with you. I continue to pray for you every day and keep hope alive that you can get through this to where you can enjoy life again. On the other hand, its almost unbearable to think of what you must be going through with all of this. I don't know where your limit is, but I sure hope you haven't reached it yet. You are that dear to us. I'm sorry to be so selfish, but there it is.

EZLiving66's picture
EZLiving66
Posts: 1358
Joined: Oct 2015

Thanks for the update,  Susan! This does not sound good at all. Come on, Bobbi, we're all pulling for you and praying you rally!!! 

Love, 

Eldri 

MoeKay
Posts: 217
Joined: Feb 2004

I see Bobbi posted yesterday morning on the "I am grateful for this group" thread.  Hope that's a good sign and that she's doing better and feeling stronger since the last update on this thread, which was several days earlier.  Sending healing thoughts and prayers to you, Bobbi!  I hope you're continuing to feel better each day!!

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

Thank you for the knd thoughts. Still massive pain and nausea where tumor is implinging on abdominal sistems. Scheded to debulk tumor and a log of other stuff in3-4 weks; no clear timefrqme yet. Problem isn't so much size of tumor but location, right at the interestuin of biliary duct, kidney duct and dosdenal opening. All three areas are now stented and I'mcrossing my fingers they hold until the tumor is debulked. Bless my friends and family for being here and you, my friends, for all your support. Bless you all.

Feelingalone74
Posts: 236
Joined: Jun 2019

Praying for u and wishing u good health dermaus!

Fridays Child
Posts: 74
Joined: Jul 2019

Hope they get the procedures scheduled soon and they are helpful to you.  I hate to think of you being miserable while you wait. Praying for you!

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