Is this one of those can't answer questions? - 1247543

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laya d.
Reply To: Is this one of those can't answer questions?

Oh no, shingles! I fought those off myself last month. I started the meds very early and never really broke out. Just had the horrible burning sensation going from my right chest area, under my underarm and to the exact spot on my back (in a straight line). Yikes!

. . .More improtantly, good luck to your Mom.

xoxo,
Laya

hopeforamiracle
Reply To: Is this one of those can't answer questions?

So sorry to hear about the stress induced crap happening to you
I truly believe its so much harder on daughters. My brother is living his life, does his "duty" call once a day and I really think I'm having a nervous breakdown.

sleepless in jersey
Reply To: Is this one of those can't answer questions?

Quick little update, don't know if I will lose power this week with Sandy coming later...
I truly believe without the LP Mom has Lepto for the last 2-3 weeks everyday and a couple of times a day she says "Do you believe your father still hasn't picked up the turkey yet, what is he waiting for Thanksgiving is Thursday" or "Do you know he still hasn't defrosted the turkey yet, it's not going to be ready in time" Than you have to tell her that it's still October Mom and we have to get through Danny's Birthday still, we still have ...wks to go!
On Friday (mind you Dad put away pain & sleeping pills away) she opened up her pill bag that has her BP pills etc.. in there and took 2 lomotil's (it's been real bad on that end ;( ) at 1:50pm than goes to her bag at 2:05pm and proceeds to open it up and takes a bottle out and I ask her what are you getting. She looks at me and says Lomotil's, I said Mom you just 2 of them 15 mins. a go. She got loud and said no I didn't and had to explain how many she took, how long a go etc. she closed her bag and walked away and sat back down on her "big chair" where she spends all day ;( I had to explain to Dad who has been outside prepping for Sandy what just took place and that your going to have to place her pills out on the counter every morning and can't have access to anything except advil and immodium and we will have to hand her what she needs!

This is going to literally going to be a tough week dealing with Sandy, tomorrow Dad is bringing her for ct/mri of head & (I think cervical spine), Wednesday I am bringing Mom for Lumbar mri (changes for lepto) than Thursday Onc. to discuss results!

God Bless all
Sleepless

certain spring
Reply To: Is this one of those can't answer questions?

Oh dear, poor Sleepless - this is very tough. Hope the storm does not cause you too much grief.

catdander
Reply To: Is this one of those can't answer questions?

Oh sleepless I'm so sorry. Your week is packed. Y'all be very careful.

Dr West
Reply To: Is this one of those can't answer questions?

I'm so sorry to hear that you have storms of every kind to deal with there.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

sleepless in jersey
Reply To: Is this one of those can't answer questions?

I ventured off to the Library to get on the computer...were being timed for 1 hr per person do to Frankenstorm. So I have to make this quick on Mom's update.
Mom made it to the Hospital for her 2 MRI's and ct scan was suppose to go back 2 days later for the other MRI onc. ordered, however Mom couldn't do it, was in too much pain with her back from being on the table as long as she was :(
Onc called Dad yest. on his cell with the results (him and I were outside while Mom was in) it was what Dad and I knew, but it hurt so bad to here it!! Dad just looked at me and welled up...
Onc said bones and lung tumors have grown a little nothing crazy, however the brain MRI shows there is so many and they have grown significantly since July's scans.
Onc explained there is nothing we could do, I offered the WBR again (Mom declined that),I offered the Inthrathecal chemo (port in brain for chemo) (Mom declined that) as you know Tarceva doesn't go to the brain we don't have much options I'm sorry!
As you know she is stage 4 lung cancer and she has beaten the odds and has been a tricky one, but theres nothing else we could do. She said it's time for "Hospice". She said it's up to you if you want to continue the tarceva it's not going to hurt her if she wants. Dad asked what could we do about her tiredness and she called in Decadron and that should help.
She said I suggest you and your daughter talk it over and if you have questions please call me and if you want me to tell Donna than I will, it is my job as her Doctor to if you would like me to? Dad said we will! Dad also asked how much time do we have and she said the normal person I would say a couple of weeks, but your wife has been our miricle worker so she could give us more time!

Dad made the decision not to tell her about the brain info and she didn't ask it either. So Mom seems OK so far with the info given.
Sleepless
continue...

sleepless in jersey
Reply To: Is this one of those can't answer questions?

We feel the mind is a powerful thing and it's like if you hurt your leg and limping for some time than you get a x-ray and find out it's broken now omg your in so much pain and it's crazy crazy...
We feel we didn't lie but just left a piece out. Just want to get a little bit more time at least through the holidays are we being selfish??? If we tell her about the Lepto and how much time than what time she has will be worse.
I just can't believe this is all happening, my Mom won't be here for long and there is so much stuff for her to see with her grandchildren I don't know what to do and how to make more memories and for my kids to spend more time without them knowing what we just found out!!
I'll try to get back on tomorrow no promises stay well all
God Bless
Sleepless

laya d.
Reply To: Is this one of those can't answer questions?

Sleepless. . .

I am so very very very sorry about all this. . .and I personally don't think that it was wrong of you and your Dad to keep the new brain stuff from your Mom. Since they can't do anything about it, then why worry her. The only thing is if you think she may change her mind about certain treatment options, etc.

What a horrible position to be in. . .I am so darn sorry.

Laya

double trouble
Reply To: Is this one of those can't answer questions?

Sleepless... I can only echo what Laya said. I'm so sorry. How did the rest of your family do through the storm?
Debra

forherbie
Reply To: Is this one of those can't answer questions?

sleepless wrote about not telling her Mom everything.

"We feel we didn’t lie but just left a piece out. Just want to get a little bit more time at least through the holidays are we being selfish??? If we tell her about the Lepto and how much time than what time she has will be worse."

We have done the same with Herbie-----have not revealed all we know.
Anne

Dr West
Reply To: Is this one of those can't answer questions?

I'm sad to hear of her progression, but she's fortunate to have so many people there who care so much for her. And it's good that none of you is facing this alone.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

tammy11201959
Reply To: Is this one of those can't answer questions?

My Dear Sleepless....I never posted much on here, just gleaned all the information I could from all these amazing people! I too was a caregiver, I lost my brave strong husband Sept. 22. Adeno with mets to the brain. He lived with the diagnosis for 2 years and 4 months and 2 days!
He went though the WBR, then chemo, when I had to finally tell him he needed to stop as it really messed his heart up. Long story I'll try and make it short. He was hospitalized during the last 3 weeks of his life with an arrhythmia, which in short, his heart was beating way too fast. So the oncologist called in a cardiologist. I was at work so I didn't get to be there for the consult, but the cardiologist convinced my husband that by doing MORE radiation on the tumor in his lung, they could fix the heart problem....it all made sense, but in my mind, looking at the whole picture, not just his heart, I could not see putting him through more radiation, one of which was cosmetic, there was a tumor on his 3rd cranial nerve that made it so he could not open his eye. The also wanted to do more radiation on his brain because there was a new tumor on his optic nerve. There goal was to give him a better quality of life! Then sad part of it all was, he had been in a nursing home for 4 weeks prior to the hospitalization due to multiple falls. It got to the point that he and I had to make that decision for his safety as I'd come home from work twice to find him on the floor. Needless to say, his oncologist and radiation oncologist are brilliant men who both estimated that there was only a 50/50 chance that more radiation would correct the arrhythmia. Funny part if is was, the drug he was taking converted him back to a regular rhythm. Sad part of it, the cardiologist, without looking at the whole picture, offered my husband a brief glimmer of hope..the hard part of it was, I had to be the person to slow things down for him, explain to him that none of the things the cardiologist wanted to

tammy11201959
Reply To: Is this one of those can't answer questions?

continued:
would extend his life. My dear husband, I noticed after the WBR was unable to multitask, so when someone was throwing information at him, like the cardiologist was, he would just agree to be agreeable. So the cardiologist got the ball rolling, which in turn got the radiologist in the planning mode. I felt like a piece of crap. Literally like taking candy from a baby, I had to sit down with him and go back to the basics of our goals right at that time were to make sure he is comfortable. We had hospice for much of the time he was in the nursing home. They were wonderful, at first he was a bit uncomfortable but learned soon that his nurse was his total advocate.

What I am trying to say to you Sleepless, If your mom thinks it's Thanksgiving...then you all need to just have Thanksgiving, Who cares if it's October, November, or July!

Also, you'd mentioned that your mom got irritated after a while with all the kids running around! My husband wouldn't get irritated, but he would leave the room and go lay down, I noticed that when there was more than one person in the room, he was unable to process all the activity. I believe it was from the WBR. Like I said earlier, his multitasking skills really did fail and he didn't have the need for pain meds till right at the end, so I don't think in his case it was medication induced, and lab wise, Dr. watched very closely.

You are in my thoughts and prayers, it's a tough time you are all going through! I am glad that you have a strong family unit as that is what will help get you and your mom through this!

laya d.
Reply To: Is this one of those can't answer questions?

Tammy:

Thank you so much for sharing your story, and I think that you are spot on with your words of advice. I'm also so very sorry about the loss of your husband. I wish you peace.

I hate this disease,
Laya

sleepless in jersey
Reply To: Is this one of those can't answer questions?

Thanks all for your help and kindness.

Dad forgot to tell me when I missed the beginning part of the call with Onc, she wanted to know how was her hearing...Dad said it's pretty good, mine's the problem (they had a chuckle he said) she said the tumors are all around as well around her ear. Onc says she just amazes me wow, because she should have no hearing!

Dad has an appt. with the funeral home tomm. and with the attorney over the wknd....my poor Dad, he sounded so somber when he called me last night! Couldn't imagine being high school sweethearts and having your first born at 17 and continued to have 2 more, and to watch your best friend, the love of your life slip through your fingers is just unimaginable!

Dad said he was not interested on calling Hospice, because when we called an agency, they explained it's a team...Nurse (I forgot how many times a wk), Aid (4-7 days a wk, depends on how much is needed and length no more than 1-2hrs a day) Social Worker /Chaplin (1-2 x a mos or more if needed). The Nurse who explained it to me was if you need someone for several hours a day than you need to hire someone, hospice is really for the family not so much for the patient!
Am I missing something? I'm so confused when my Mom's sister past 15yrs ago from cancer I remember there was someone there all the time. Was it that it was coming to that time so it was just the last 2 weeks or so and that's when they stay?

Sleepless

catdander
Reply To: Is this one of those can't answer questions?

I hope you have a moment to read this this piece on hospice it explains what hospice is and isn't. Very simple very informative. http://cancergrace.org/cancer-treatments/2011/03/10/what-is-hospice-fact...

Your poor dad, this is absolutely heartbreaking. You remain in my thoughts.

laya d.
Reply To: Is this one of those can't answer questions?

:O(

petunia
Reply To: Is this one of those can't answer questions?

I am so sorry you are going through this. I am on this site often but not for long period of times and just read your story. Have you had Hospice come in to the home? I agree, have Thanksgiving this Thursday. Have Thanksgiving every Thursday. You are so strong and I cannot imagine doing all this and dealing with all this and still taking care of a family(children.) I am married but do not have children and cannot imagine having to take care of children also. I agree not telling your mother as that is exactly what I would (or will) do when the time comes. You are very strong and I admire your attitude. I can only hope to be as strong as you when this time comes in my life. I feel as though this "c" changes the family. It brings you closer together but can also tear you apart. Please hang in there and know that many people are sending their good thoughts and prayers.

Dr West
Reply To: Is this one of those can't answer questions?

I'm sorry your family is facing all of this. It's true that hospice teams don't generally have people there around the clock, but just visiting for a while something between once per day and once per week. There need to be other people available, either friends or family or hired help, etc., to assist with the around the clock activities of daily living like bathing and cooking, dressing, helping a patient get to the bathroom if needed, etc.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

sleepless in jersey
Reply To: Is this one of those can't answer questions?

I am going to put a call into the Onc today, this was Mom's sched. appt., however she said to call if we had any questions. I want to know what we could expect from hear on in and pain mangement? She has been taking advil for her on/joint pain, but now a new symptom started yest. when I walked her the kitchen, she stopped and winced and grabbed the rt side of her head (stabbing pain) and went away in about a minute. Dad sent me a text this am and said Mom took 3 advil at 4am that stabbing pain came.

Onc did prescribe Decadron last week, don't know if she started it, would that help for brain swelling or just with the tiredness?

Sleepless

PS- Mom no longer speaks of Thanksgiving, she now has moved onto Christmas...the gifts for her grandchildren.

certain spring
Reply To: Is this one of those can't answer questions?

I am so sorry to hear that you and your father are having to deal with such a difficult and upsetting situation. I think you're absolutely right to ask about pain management.
Decadron (dexamethasone) should definitely help with the brain swelling - one reason why they give it is to reduce inflammation in the brain and the build-up of pressure that causes symptoms like headaches. It might be worth knowing that it can make people a bit jittery, inclined to wake up early in the morning, and sometimes very hungry! Very best.

Dr West
Reply To: Is this one of those can't answer questions?

Yes, decadron (dexamethasone) would be a preferred treatment for brain swelling as well as for energy and appetite. But her oncologist may have some additional ideas for ways to deal with her pain...there's plenty of options besides Advil.

I hope things can get more comfortable for her, and for you and your father.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

catdander
Reply To: Is this one of those can't answer questions?

Just checking in to say I'm reading your posts and hoping these symptoms can be addressed quickly. Have y'all spoken to anyone at hospice yet? I think they could really anticipate and make ready for what your mom needs.

Janine

sleepless in jersey
Reply To: Is this one of those can't answer questions?

update: Mom is starting Fentenyl patch the lowest dose, hopefully tomorrow Dad will apply it for pain to take care of the headaches/stabbing pain on/off.
I go to the house now daily til Dad comes home from work (can't be left alone...too many falls are happening/confusion)
Had a good day today...ate like a champ, got a lady to come to the house and do a mani/pedi :)) big smiles on Mom...she even wanted a glass of wine at the end of the day (it consisted of club soda with a splash of red wine).
Spoke to Dad after dinner and the night didn't go as well as the day...it's moment by moment :(
She got quieter and quieter the headache kicked in, rt shoulder/hip pain than went to bed and cried for Dad to come and lie down and stay with her...
Dad's not ready for hospice...don't want to push him...he had a rough weekend, went to funeral home on Sat. and made arrangements, than the home asked would you like the priest to pay a visit, Dad says sure for during the week til he got a call he is able to come today will that be OK...
(Dad planned it with Mom, that he was going for the both of them, so it want just for her, so he said she was good with it)....Mom was very emotional after the priest left the house.

God Bless
Sleepless

Dr West
Reply To: Is this one of those can't answer questions?

Of course, it's his call to make, but I don't really understand the profound aversion to hospice when he's talking with people at a funeral home. They don't torture people...they help. Avoiding hospice doesn't protect someone with progressing cancer from dying...it just often prevents them from dying as comfortably as they otherwise would.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

laya d.
Reply To: Is this one of those can't answer questions?

Oh Sleepless. . .I'm so sorry. . .This is all so hard. . .

From my own personal experience/conversations, I feel that a lot of times people are confused about what hospice is (and I am not saying that your Mom and Dad are included in this group). I think many people think that hospice always is a physical place- - and don't realize that it's more like a service. Just this past week when I mentioned hospice to 3 different friends separately, they each thought it was a place that one goes to to die. I explained each time that this is not necessarily the case. That hospice provide support both for the patient and the family, and basically is there to ensure that the patient is comfortable and pain-free. From what I understand, most of the time this service is provided to patients for a few hours a week in the patient's own home and/or on an on-call basis- - although I know that in-patient hospice centers also exist. So, maybe this is a part of your Dad's trepidation with the whole thing. Maybe he (like my friends) thinks that your Mom will be taken somewhere for the remainder of her life, as opposed to just a home health professional coming by to check on her a few times a week to make sure that she's comfortable.

Again. . .so sorry you are going through all of this.

xoxo,
Laya

sleepless in jersey
Reply To: Is this one of those can't answer questions?

Our family all knows clearly Hospice is not a torture group or place, however when Dad chose to tell Mom the results he held back a little it which was about the brain MRI and she didn't ask either! So how does Dad turn around and tell her were calling hospice in, you might as well tell her the DX I guess is what he's feeling? Also Mom knows clearly it's for your end of life, she sat with hospice with her sister who had cancer!
Dad is not in denial at all, and trying to prepare things so that when time comes he doesn't act emotion later and misses anything that he should have and etc...

Just a very hard call and I know last night would have been one of those nights where if we had hospice we could have put the call into them. (bad headache, rt shoulder/hip pain) when Mom was in sooo much pain. Mom asked Dad call me she may have ideas what to do?? He already gave her 6 advil within a short span and placed the patch on...I said Ice around her neck (he said it was causing more pain) or heat up the flaxseed compression, a shower or warm up the biofreeze and rub it on hip/shoulder.

I called the Onc's office and it was one of the worst Doc's on call of the group...we have experienced him when Mom was last admitted and even our Onc was very unhappy with the care Mom received and she expressed why. So it was left one of my options until it kicked in what he gave her or go to the hospital and the could monitor on morphine possibly?

So sick to my stomach that if she went to the hospital she's not coming home :(

Sorry for venting...I/we will figure it out
Sleepless

laya d.
Reply To: Is this one of those can't answer questions?

Again, I'm so sorry Sleepless. . .This is beyond difficult.

I'm just trying to think up some ideas here. . .so, I'm wondering, is it possible for your Mom's Onc. to order for a home-health nurse to visit your Mom once or twice a week just to check on her and make sure that her pain, etc. is being managed?

Again, this is is so hard. . .I'm so sorry. . .

catdander
Reply To: Is this one of those can't answer questions?

If it were cut and dry it would be easy to say it's your mom's call to make. But it's too often not that clear. I wonder what your mom would have decided for herself if she had this information 5 years ago.

so devastating

laceyor
Reply To: Is this one of those can't answer questions?

So sorry to hear about this... My mom just passed away a month ago tomorrow and I feel compelled to share with you why I'm glad we called hospice in. My mom was convinced that this round of chemo was going to work and even though she was clearly declining rapidly, she was very sad and reluctant to transition to hospice care. But we did. She died 5 days later. I know that this was the path we were on long before hospice came to us. I also wish that they had been there earlier to help us keep her more comfortable as we struggled to control her pain for so long. The number one most important thing they had for us was the comfort kit. This little box of medications made it possible for my mom to die at home as she wanted. Had we not called hospice in, we would not have gotten that, and she would have likely ended up in the hospital due to uncontrollable pain. I completly understand why your dad is reluctant to call hospice in, but I hope this gives one more reason to consider it. They can't provide around the clock support in the house, but knowing you have someone you can call at any hour who will come out if you need them is amazing.

I hope for peace for your mom and your family during this time.

Lacey

certain spring
Reply To: Is this one of those can't answer questions?

What a kind and generous post - thank you for sharing your experience, and I am sorry for the loss of your mother.

laya d.
Reply To: Is this one of those can't answer questions?

I'm so sorry to hear of your Mom's passing, Lacey. Thank you for sharing your experience here with us. I wish you and the rest of your MOm's loved ones peace.

Laya

tammy11201959
Reply To: Is this one of those can't answer questions?

Lacey, I am sorry to hear of the loss of your mother. My thoughts and prayers are with you and your family. Besides being an advocate for the patient, Hospice is also an advocate for the family. As of Nov. 1, 2010, I have lost my mother, due to all sorts of heath issues including bladder cancer, my dad, 4 months later, basically because of a "broken heart", he had many cardiac issues, and a lung cancer than was first noticed 10 years earlier on a routine chest Xray, that never grew to more than the size of a nickle. Long story, but he was so strong and tough, his main goal was to be there for my mother, when she was gone, he got weak, pneumonia set in, and that was it. Then my husband this past September. We had the same hospice nurse for my husband as we had for my mother. She was so kind and supportive, explaining to my father and brother and to me what her goals were for my mom, my mother just loved her. My husband was somewhat apprehensive when I initiated hospice, but he soon realized that besides his care, I needed it too!! I'd told my husband since the beginning that I would do my best to help him have an easy passing, and I believe that he did.

Certain Spring, I am aching for you....

laya d.
Reply To: Is this one of those can't answer questions?

Wow, Tammy. . .You have been through so much loss. I'm so very sorry. . .

Laya

sleepless in jersey
Reply To: Is this one of those can't answer questions?

Mom's scans/report were just recently sent to my parents house and I got to read a bit and could no longer read anymore....confirmed Lepto and the "C" has ran ramped through her kidneys, liver etc...

I don't know how else to ask this question, but to just ask, does "C" go through your pores/fluids? Tying to hold on to Mom's dignity during this God awful time.

Sorry not on as much, I spend all of my time time at Mom's now....I think about you all!

Have a Happy and Blessed Thanksgiving to all
Sleepless

laya d.
Reply To: Is this one of those can't answer questions?

Oh Sleepless. . .I am so very sorry. I don't know the answer to your question, but have never read anywhere that cancer can come through a person's pores. Fluids, of course, are a whole other ball game. As you know, cancer definitely can be found in people's blood and lymphatic fluids. That is how it spreads. It also can be found in the cerebral fluid if it has spread there. But, let's see what the docs have to say about this. . .

Anyway, I am heartbroken for you and the rest of your family. I hope that your Mom is being kept comfortable and pain-free.

xoxo,
Laya

Dr West
Reply To: Is this one of those can't answer questions?

I'm very sorry to hear of the unfavorable scan resulta.

Cancer's not considered contagious, if that's really what you're asking. Yes, there could be microscopic cells in blood, but I don't know of anyone who has ever had cancer transmitted from receiving blood from someone with cancer. I think that functionally, transmission from person to person is not a realistic concern short of accepting a transplanted organ that has cancer tumors in it.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

catdander
Reply To: Is this one of those can't answer questions?

Dear dear Sleepless, This I know is just so heartbreaking for you, your mom, and family to live through. I hope your mom is comfortable. I know you are contributing to her maintaining her dignity and comfort and will do what you can for her. How are you and your dad? I think of y'all often.
I hope your family is together today.
Janine

double trouble
Reply To: Is this one of those can't answer questions?

Sleepless, I'm sorry you're going through this. I've been thinking about you and hoping you were able to have a real Thanksgiving. I'm glad you're able to spend the time with your mom that she needs, and I'm sure your Dad is grateful to have you around as well. I hope you know how much we all care about you, you're one of the family, and when you hurt, we hurt. Sending you much love,
Debra

sleepless in jersey
Reply To: Is this one of those can't answer questions?

Thank you all for your quick responses as always!
Debra-That was very comforting and you brought a happy tear to my eyes...Thank you for that :)
Janine- Mom is comfortable right now, she's up a dose on her fentaynl patch to 25mg that we change every 3 days so it keeps the headaches at bay and her on/off joint pain as well. She as well as us had a very nice Thanksgiving! She was happy to see everybody as well as my husbands family that popped in to see her for a bit.
I think I didn't word it right, sometimes when your beating around the bush it doesn't come out right...what I was trying to ask about cancer was does it give off an odor like through your pores or urine? Recently Dad and I have noticed it and it seems to be getting stronger we feel like it since the report says that it is in kidneys, liver etc that is it that things are not working or filtering properly that its the odor of the cancer that we smell and its getting stronger as days go on? Like I mentioned earlier, trying to keep her dignity. Mom still takes showers almost everyday so it's not hygiene issues.

I remember when I worked in a oral surgeons office many, many years ago and we had this patient who had cancer as well and I will never forget the smell that remained in that exam room for several hours after that it's still in bedded in my head, but his was a different story this patient needed a total neck disection (if I remember correctly it was the decaying of the mouth/neck that had lingered).

Her medications are the same except now she is on Decadron twice a day that's it.

Sleepless

sleepless in jersey
Reply To: Is this one of those can't answer questions?

As you know Dad had gone to make arrangements a couple of weeks ago and the director had informed Dad to make sure you call hospice and explained why it is so important besides the obvious as well coming from the funeral homes view. So I called, got all the info.now it's up to Dad to listen to me and he says I'll call you later and we'll talk about it and that's been for about 2 weeks now...

I had gone into the f.home on Tues. because they asked for me to come in and pick out the prayer cards, they said it's better for your daughter to do it than you. Needless to say I had a very difficult time and my eyes were to filled to be able to read them so thankfully they told me to take it home and read them and bring the packet back on Fri. here I am and I still haven't picked one out yet, it's so very hard!

Dad thinks he's going to have to hire somebody for night time for whatever reason she has to get up and go to the bathroom sooo much there's times like last night every half hour, than there's the other day that she got up twice? Dad is just very exhausted and running a business on no sleep just is not working!
It seems to be that when she lays down it would cause the sensation for some reason. During the day while I'm with her she doesn't go that much, yesterday for the 6 hours that I was there she went once.

Sleepless

double trouble
Reply To: Is this one of those can't answer questions?

Hi Sleepless. I'm just checking in for an update. I'm hoping you have gotten on board with Hospice by not and that some of the pressure is off you and your dad? I know I speak for others that you are in our thoughts.
Much love,
Debra

sleepless in jersey
Reply To: Is this one of those can't answer questions?

Just want to give a quick update on my poor Mom...Crazy I know, but Dad still has not called hospice!
She can no longer be left a lone anymore so I am there from 9ish til 4/4;30 daily.
We now have to use a transfer chair to get to the bathroom. I don't know if it's the 1mg of Decadron twice a day that has her eating so much (3 meals and 6/7 snacks a day) we stopped the megace.
She also has been sleeping a lot more during the day, not even in bed just falls a sleep in her chair now.
Latest symptom is getting winded when there is any exertion.
I found out that she stopped her metformin (diabetic pills) for whatever reason and Dad didn't pick up on it either when she was in control of taking her meds...well I thought was a UTI she had, it turned out I believe was her sugar, when I called the company re:her finger tip blood sugar machine they sent out new strips and new machine and her sugar was ranging in upper 300"s. Dad put her on her pills (for whatever reason not giving the written dose but I have to pick and choose my battles, it's better than nothing I guess) so now it's in the 200's not great I know!
With me there so much during the week and Christmas next week I haven't been going there on the weekends...my bother came by and picked up my daughter to go to Mom's and when he brought her back he said I have a message for you from Dad...Mom has declined since Friday, just be prepared for when you come on Monday. I asked my daughter how was grams...she said there was no reaction on grandmas face for anything at all today and when I asked her a question she just stared at me like I didn't speak to her.

Continued...
Sleepless

sleepless in jersey
Reply To: Is this one of those can't answer questions?

She still is just on 25mg of Fentanyl patch and 3 advil when something hurts...Dad also gives her 1 or 2 percocets usually for bedtime or sometime in the middle of the night (yup he's up all night bringing her to the bathroom, it varies to every 15 mins to every hr or could sleep from 7 til 12 than it's every hr etc).
I know Mom has an amazing pain tolorance, but my God!

I am putting a call into Onc tomorrow, Dad is refilling her prescription folic acid, I know it wont hurt, but is that necessary anymore is that just another co-pay, another pill for Dad to give her daily that could be unnecessary?

Sleepless

catdander
Reply To: Is this one of those can't answer questions?

Hi slieepless, this must be so very difficult. I can't imagine there's any reason for your mom to be on folic acid but I suppose her oncologist can answer that. Just a reminder, please make sure she has BM everday or so. Well everyday since she's eating so well. With the pain meds she will most likely need a stool softner plus a laxative to help the muscles work. With the pain meds the bowel muscles tend to relax too much to function properly on there own. It can cause an awful lot of problems and pain when not monitored.

What is the onc saying about the hospice situation? Are you going with to the appointment? You may be of help in getting the onc to help explain the need for help at home. You may even call and speak to her nurse before hand and explain the situation and your wishes.

Please keep us posted and keep yourself healthy. I hope your husband's knee is as good as new.
Janine

Dr West
Reply To: Is this one of those can't answer questions?

I can't imagine that there's any value in continuing any medications that aren't likely to help her feel better and live better in an immediate way. So specifically, I agree that folic acid is almost certainly only on her mediation list as a carry-over and a ritual, and that its presence or absence won't make any difference right now.

I'm sorry it's such rough going with you mother. I really see hospice as about the only intervention that is going to be beneficial to help her and your family, and even that sounds like it's getting late for that to be very helpful.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

sleepless in jersey
Reply To: Is this one of those can't answer questions?

Janine~There are no future appt. needed anymore, just phone calls to the Onc. is what Onc, stated with the results of our last call, but could come in or call at anytime we need!
Thank you for reminding me about the BM, it's been a couple of days she stated, so I am now writing that down as well in the book with meds given etc...
You have a great memory re:my husbands knee :) it's getting there with P.T. and goes back to work on Jan. 2nd. Boy I am going to miss him when he goes back, with me at Mom's all day he picks up the slack at home dinner, kids errands etc..

West~ I spoke with the NP of the office and she stated no need to take folic acid anymore that was when she was on a certain chemo. I hope I could talk to Dad into still making the call to hospice. I know how beneficial it would be for all, but Dad he is the boss.

God Bless
Sleepless

tammy11201959
Reply To: Is this one of those can't answer questions?

Your poor Dad...and poor you!! I think of you often. Tell your dad that you need hospice for you!!! Tell him that it will help you during this transition in helping your mother!! In the long run, he will see the benefit. It is so hard for Dads as they always have the responsibility of the world on their shoulders and Dads can fix everything. This has to be tearing him up...learning that he can't fix this. He is in so much pain.

sleepless in jersey
Reply To: Is this one of those can't answer questions?

Tammy I think you hit the nail on the head.. Dad is not a mechanic but we call him the mechanic he fixes everything but he just can't fix this!

Mom has an appointment at her M.D. don't know how Dad is going to get her down there bi-level house stairs than down the front steps that's maybe 5 steps... Mom has has neck/face swelling as well as left ankle/foot swelling and had a weird cough that was junky out of no where than came down with my cold days later. She mentioned a couple of days a go she was drenched in bed that she had to get changed from sweating, but no fever. We'll last night she had great difficult walking to the bathroom, her feet were killing her out of no where. Today when I brought her to the bathroom she couldn't walk as well, so I looked at the bottom of her feet and there was a big water blister on the heal of her LT. foot and under the big toe etc it was like a port wine stain look, the RT foot was more of the color no blister like.
We needless to say have an appt. I saw thought it was her sugar, but now thinking heart/pericardial effusion after thinking circulation.
I write this with water in my eyes on what tomorrow and the next couple of days are going to bring Mom and our family...I just hope I am jumping the gun and on the internet tonight too much!

God Bless
Sleepless

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