gerbil runner
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Posts posted by gerbil runner
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Nancy, hang in there. Three times now my mom (Bellringer) has been so ill we thought we would lose her. Each time she has come back, albeit slowly.
Getting Mike to drink and eat will help. Be encouraging to him as much as possible.
As for how less frequent visitors react...they don't see the full minute-by-minute struggle. Listen more to your own instincts.
Find out how to get some help at home, even if it's just a shower chair and other medical goods. Perhaps a social worker at the hospital can help with that. Showing Mike you have a plan to help him get out and recover at home may lift his mood a bit. It will also give you some confidence. Ask about visiting nurse organizations - can you get help there? My mom is getting help from a hospice organization which has a program to help seriously ill people who are still seeking agressive treatment. Maybe there is something similar you can use.
Will keep you in my prayers. Hope you all can enjoy the wedding.[/u][/i]
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What was really shocking was how fast this happened. Mom had had CBC done on April 6, and all was normal. 3 weeks layer, she needed 2 pints of blood!
She looked so bad on 4/27 that the onc. told us later that he didn't think she'd make it past the weekend if it had been cancer like everyone first expected
.Hemolytic anemia, BTW (which was not confirmed) occurs when the body mistakenly destroys red blood cells ahead of the 120 life span normally expected. It can be caused by certain medications (non of which my mom was on), or by infections, or for "unknown" reasons. It may continue for a lont time, or just disappear on its own. Weird, the things you learn.
Now that Mom is mentally back to normal after treatment for brain mets, we'd all like to see her get around better. (Sshh...I bought tickets to see the Smothers Brothers June 5 even though Mom wanted me to wait and see if she was feeling better...a good carrot).
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So glad you're ok!
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Prayers for a great outcome...
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Mom ended up getting 2 units of blood for low hemoglobin. Not sure why it happened - a search on the 'net raised the possibility of an autoimmune hemolytic anemia, and since the dr.'s have put Mom back on low dose steroids(which would treat such a condition), they may suspect it, also.
Mom is still weak, but the new stair lift installed Friday should give her incentive to get around more.
Moral of the story? When things go bad fast, don't assume it's the return of cancer. Mom's scans were clean except for the remains of "fried" brain mets (which are a whole lot smaller than in early March).
Another dip on the roller-coaster weathered
.Thanks for all your prayers and encouragement.
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Uh, Rick, this is NOT the surprise Katie wanted for Mother's Day.
Please get better soon and make it up to her
.Keeping you all in my prayers.
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Glad to hear it's working out for you!
BTW, ask your vet about something for Tim. I had to take a car-phobic kitty on a 1000 mile trip - they do make kitty drugs (Ruthie staggered like a drunk and purred like a motorcycle when I let her out
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Glad you didn't let the turkey get you down, Doug. I love your well-written posts.
I've never been a smoker, but have seen the h@ll my mom went through trying to quit. I have no doubt it is one of the world's toughest addictions to quit.
Which brings up a point that really ticks me off - you can get in-patient treatment for alcohol and illegal drug addictions, but want to quit smoking? You're pretty much on your own. Why isn't there intensive help for such an intensive addiction? Not fair.
Anyone overweight should certainly have sense enough to shut up about people who can't quit smoking. And I bet that would cover a bunch of 'em (and yes, I carry extra padding). "Let whomever is without sin cast the first stone".
It takes more than cigarettes to cause cancer - otherwise all smokers would get it, and non-smokers wouldn't. I hate the way cigarettes are allowed to distort the issues - we need a cure.
Again, Doug, you are a class act and a smart one. In a perfect world, you would be able to quit smoking. But nobody can do everything right, so just do the best you can.
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There are some organizations which will offer skilled supportive services for dangerously ill people who still want to pursue treatment.
Here's an excerpt from their website:
Palliative Home Care Program
Home & Hospice Care of Rhode Island's Palliative Home Care program offers practical help at home intended to comfort and support families and individuals living with a progressive life-threatening illness with a life expectancy of a year or more. The patient may still be receiving active treatment but has a skilled needs such as pain and symptom management. Palliative Care encompasses a broad range of services, including the basic components of hospice care. However, Palliative Care services are provided earlier in the disease process and are not limited by a specific prognosis.
Home & Hospice Care of Rhode Island offers Palliative Home Care to patients who may not be ready to stop disease-modifying therapies and who may have a more chronic, longer-term disease. Palliative Care services may be initiated at any time during the diagnosis and treatment process.
Care is provided in the home and in assisted living facilities. The goal of Home & Hospice Care of Rhode Island is to meet the specific needs of patients and families, improve the quality of life of the patient and to offer relief from pain.
My mother is getting a visit daily, home oxygen, help with pain meds, Foley catheter...and the nurses have been wonderful. We also can have a social worker if desired.
Nobody should have to choose between treatment and supportive care.
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Glad it's all done and you're comfy.
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Poor little guy. Will do.
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Mom went in for her scans today, and...the brain mets are much much smaller, and no evidence of cancer anywhere else!
So, what's going on? It looks like adrenal insufficiency, caused by steroid withdrawal, and possibly complicated by the horrible cold Mom had a week and a half ago. If so, it's very treatable and Mom should feel much better in a couple of days. I'm waiting to hear from Dad as to the final results, but Mom will be home tonight. I'm going up to visit with her this evening. Will update later. Thanks for all your positive thoughts and prayers.
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Well, Mom was a bit better yesterday afternoon - perhaps the oxygen is helping. The nurse also placed a Foley catheter, so fewer trips to the bathroom are neede. Good thing, 'cause Dad's back is getting very sore.
Here's an excerpt from the website for the program my mother is on from hospice:
Palliative Home Care Program
Home & Hospice Care of Rhode Island's Palliative Home Care program offers practical help at home intended to comfort and support families and individuals living with a progressive life-threatening illness with a life expectancy of a year or more. The patient may still be receiving active treatment but has a skilled needs such as pain and symptom management. Palliative Care encompasses a broad range of services, including the basic components of hospice care. However, Palliative Care services are provided earlier in the disease process and are not limited by a specific prognosis.
Home & Hospice Care of Rhode Island offers Palliative Home Care to patients who may not be ready to stop disease-modifying therapies and who may have a more chronic, longer-term disease. Palliative Care services may be initiated at any time during the diagnosis and treatment process.
Care is provided in the home and in assisted living facilities. The goal of Home & Hospice Care of Rhode Island is to meet the specific needs of patients and families, improve the quality of life of the patient and to offer relief from pain.
The nurses have been absolutely wonderful, very gentle and attentive to Mom. She was very concerned that calling in hospice meant "giving up", but this organization makes it clear that treatment can continue. If only more programs like this were available...cancer treatments can be very difficult, and supportive care could make a huge difference in quality of life for the whole family. In some cases, such care may be the only way treatment can be continued! Nobody should have to choose between getting treatment and getting help.
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Mom is weaker still, and is beginning to get confused. She can't eat more than a couple of bites at a time. The hospice nurse said her blood pressure is low and heartbeat rapid. It doesn't look good right now.
Mom, Dad and I all want her to make the scans on Thursday to find out whether it's disease or radiation side effects causing the problems. She had a chest x-ray last week due to a bad cold, which showed nothing of interest.
Now, normally a hospice program means that there will be no more treatment OR testing. However, the hospice organization we called has a program called "home palliative care" which will bring in oxygen, a nurse to help Mom bathe, social worker if desired, and made arrangements for ambulance transport for Thursday since Mom can't get down the stairs without help and it's getting too risky for Dad to try to help her down. We're hopefully getting a stair lift this week, but didn't want to chance missing the scans. They have great insurance which will cover it.
At any rate, under this hospice program, Mom still keeps her regular doctors and can pursue chemo if needed
. It made us all feel relief to know we can get plenty of help without giving up hope of treatment, or at least knowing what is wrong. I wish there were more programs like it, for those who are in serious need of help but not ready to give up treatment options. No DNR required.This agency also has a 10-bed inpatient facility for hospice only. 24 hours visiting, including pets. Four-poster beds and sleeping recliners in every room, and a common family area with kitchen. Nice to know if we need it, but we all prefer for Mom to stay at home.
My dad is upset, of course. They've been married 38 years. He lost his mom to breast cancer when he was only 13, so this also brings up sad memories.
We're still hoping that these problems are related to radiation, and that Mom will have some good days ahead.
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Mom (bellringer) is not doing so well. Radiation is complete, and the brain met symptoms are gone, but Mom is very weak and getting weaker by the day. Her dr. pulled her off steroids fairly quickly, thinking they wer causing the large muscle weakness, but even off all steroids she is rapidly getting weaker. She has fallen several times. Hospice has been called to help with safety and mobility issues. I am cutting back at work to spend more time with them. Mom can't be left alone anymore because of the falls.
Dad, Mom and I are afraid the beast is back elsewhere. Mom is very short of breath and has lost all appetite, in addition to the weakness. Mom has scans this week, so we'll know more later. I have no idea at this time whether Mom would opt for more chemo. She still wants more time, I know, but... we'll cross that bridge later, I guess.
Prayers for all of you, too. I've kept up with the news, even though I don't post much. Betplace, Dave & Karen, and cathyr - you especially have been in my thoughts lately. Hoping for the best for us all.
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Thank you all for your prayers and kind words.
There are 3 brain mets - the largest is about the size of a ping-pong ball
. Mom had her first WBR treatment on Friday. She is on Decadron also, but so far it's not having the nasty mood side effects it did in the past.Mom's oncologist is in Japan giving conferences, but will be back to see her in about a week and a half.
We're not sure what to expect at this point. Anyone with SCLC and brain mets - what are your stories?
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I'm sorry I've been so quiet lately. I still read almost every day, and pray for all. My husband lost a sister to a brain aneurism in December, and our business has been very difficult to deal with.
Mom was hospitalized with undiagnosed pain in November after her pancreatic stent was removed. The best anyone could figure was that she had a gallstone (even though her gallbladder was removed 36 years ago) which caused the pain.
Then in December she got an infection of the lung lining which would have killed her had not the doctors involved been truly wonderful.
When Mom was discharged after Christmas, she was noticeably weakened by the time in the hospital, and depressed that she spent 2 Christmases in a row in a hospital bed.
Slowly, Dad started noticing that Mom was "off" a bit. Not good with keeping time. Quieter. Not having an opinion about much of anything. Fascinated with the second and on her watch.
Long story short - today Mom had a brain MRI, and there is a brain met.
Mom has questionable judgement, and is having continence problems. She's perfectly happy, but says she understands why Dad and I are so worried.
Tomorrow she begins radiation. We don't have a full report yet as to how large the met is, or whether there is more than one.
Please remember my mom, Claire, aka "bellringer" in your prayers.
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So sorry to read this. Hope some good medicine makes your family a story of survival.
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So glad you've beaten the statistics. I greatly admire your inner strength and wisdom.
Enjoy your world, and drop us a line whenever you can.
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Saying prayers for your son...and you too, of course. May it be something very boring and insignificant.
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Saying prayers for you and yours...let us know...
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Karen and Paddy, I'm so sorry. Wish words could make it easier.
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Well, now it's been 5 days of unrelenting pain. The gastroenterologist does not feel pancreatitis is likely because eating does not make it worse. No infection, nothing turning up in bloodwork, nothing on CT scan or xrays...Mom's on enough medication to stun a buffalo and is getting seriously loopy. She's still in pain.
Dad and I are upset, frustrated, and worried. We're hoping that tomorrow will bring some answers and relief.
Thank you all for your prayers. I'll update tomorrow.
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. It made us all feel relief to know we can get plenty of help without giving up hope of treatment, or at least knowing what is wrong. I wish there were more programs like it, for those who are in serious need of help but not ready to give up treatment options. No DNR required.
Thank you for prayers for Brian, please continue them
in GENERAL
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Chemo is so tough...things seem to get worse before they get better. I know you will take great care of Brian to help him get through it.
Don't be afraid to press the onc. for answers. Make sure s/he knows you want agressive treatment and won't settle for an "oh, well" attitude.
Still keeping you in my prayers.