Mom with Stage 4 - Mom Gone :(

trey · Last edited by trey on Sat Jun 14, 2008 11:48 pm; edited 1 time in total

Hi everyone. I have lurked on this site for several months since my mom was diagnosed. She was initially diagnosed as a Stage I adenocarcinoma in July. In April she was a Stage IV. This disease moves incredibly fast. This is a great site and has been very informative.

Mom has declined chemo/radiation. Had a lobe removed in October but as the doctor was closing her up he found it had spread. Currently it has spread to liver, ribs/bones, lymph nodes and has fluid in her lungs. Don't know about brain. Last month the doctor gave her 6 months. This past weekend she looked great. However, she has been experiencing shortness of breath (she is blaming it on the humidity, she is on oxygen), severe stomach aches - and has always had an iron stomach, pain she says is back pain but seems to be coming from the kidney area. My sister called tonight and said mom sounded different, and has asked to be alone (she lives alone, is 66 yrs old, and has a part-time care giver) and not to call until Tuesday. She does like her alone time, but my sister is causing me to wonder how concerned I need to be. She said mom said she also has a sinus infection but mom refused to say how she knows she has one.

Anyone know what the stomach pain could be? Could the pain in the kidney area be something more than bone mets to the hip area?

Her primary doctor is a hospice doctor. Mom has been told by the doctor and friends to bring hospice in early, but I think she is still a bit in denial.
Any thoughts sure would be appreciated.......Thanks.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1302

Hello Trey,

Welcome to this community and once again, I'm sorry you had a reason to find us.

Sounds like your Mom is a fiercely independent woman! I do wonder about depression though with her wanting to be left alone. Might want to do a pulse check on that score. I do know that my husband was very much that way. It's hard when you have pain and trouble breathing and he didn't want company coming over very often. Even our kids, so I understand how a person can get as they are declining.

Your Mom's fluid is probably not in the lungs, but is something called pleural effusion. This is the sack that the lungs sit in and fluid builds up in this area for a variety of reasons -- the cancer itself, sometimes a chemo reaction, or from radiation to the area. The lungs themselves are prone to radiation pneumonitis, which is an inflammatory reaction inside the lungs from the radiation treatments. Oxygen won't help with her shortness of breath (SOB), but is there to keep her blood oxygen levels at normal rates (above 95% is good). The pressure on the lungs from the pleural effusion does create terrible SOB and she may need to have the fluid removed in a simple procedure called a thoracentesis. They use a long needle to extract the excess fluid. She also could be SOB due to pneumonia or tumors blocking her bronchial tubes. Humidity is always a problem for someone who's breathing is compromised and she should be running her a/c to keep the humidity levels low. Sometimes a fan directed at the patient can help make them feel less SOB.

I don't know about the stomach pain, but it could very well be her liver that is causing the pain as you've said she has liver involvement. Liver mets can be very painful. A friend of mine had a lot of liver involvement and was in horrific pain. I do know that lung cancer likes the adrenal glands and those sit on top of the kidneys. She may have mets to that part of her body.

If your Mom has a history of sinus problems, I'd take her at her word. If not, it could be that the cancer has moved to her brain. We were told that if a headache would go away with simple over the counter pain relievers, then it's probably not a brain met. Just our oncologist's rule of thumb.

She sounds like she needs some type of at-home care at the very least, to control any pain and keep her comfortable. (Oh, I just noticed she has a p/t caregiver. Whoever that is needs to step up to the plate and get her some help.) Is she actively being seen by a doctor? I think she needs to have some of these issues checked out and fixed for her own comfort.

Good luck and keep us posted.

God bless,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

trey

Thanks - I am a bit concerned about the sinus infection. No she has no history of sinus infections. I don't know if she made that up to blow my sister off, or she really thinks she has one. But then no one is supposed to call her until Tuesday! She does love her doctor so I do think if things get bad enough she will call her, or me, or the caregiver whom she told to stay home. I would of course like to help her before that point. Fiercely independent - absolutely. She is on a high dose of anti-depressants and yes that is a factor too. She is good about taking her medication. She also has a lot of pain meds available to her. Which I guess could either be a good thing, or a bad thing if she over medicates herself.

The adrenal glands sound right - I will recheck her PET results when I get back home. It's just so frustrating as everyone is more than wiling to help her. I don't want to force Hospice on her, yet I think it would be beneficial to all of us. I think she thinks that Hospice is "the end" so she is holding off. She hasn't even told her brother and sister she has cancer, so you can see how private she is.

I so appreciate your thoughts Smile

and for letting me vent. It really helps talking to people who are going or have been through it.

Trey Shocked

_________________
love & pixie dust to all...

Mom diagnosed w/NSCLC adenocarcinoma stage IV at age 66, declined chemo or radiation.

Tera · Senior User Joined: 31 Dec 2007 Posts: 187

Trey, your comments hit home to me and I'll tell you why. My mom also was fiercely independent but my first inkling something was very wrong was when she claimed she had a bad cold/sinus infection, and wanted to be left alone. She even hung up on me. Now, my mom, while being very independent had NEVER done something like that so I left work and flew over there, breaking every speed zone to boot.

Bottom line....she was very dehydrated and hospitalized. That was when she was diagnosed with cancer. One month later, I lost her.

I'm glad I followed my instincts and left work to go over there. She just did not sound right. When we got her to her doctor's office that day (and she even refused to let me take her to the doctor....I had to get him on the phone and he told her she needed to come in...that was the only way she would go), her blood pressure was 87/50. Had I left her alone, I probably would have found her in very bad shape, if not dead.

Not trying to scare you by any means. But you know your mom....you use your judgement and if you feel she needs to be seen before Tuesday, I implore you to follow your instincts. Cance rpatients may say things from dehydration, medication, brain metastases, any number of things and we have to do what is best for them while still allowing them to make their own decisions and judgements. Can be a fine line, let me tell you!

Mom too refused Hospice. She thought she had to give up her personal physician and use only Hospice physicians....not true. She also thought it meant giving up....again, not true. I asked her oncologist's nurse to please explain Hospice to mom. She did and Mom then agreed to them coming on board. They were a lifesaver, a totally wonderful organization, that will honor your mom's wishes and make her very comfortable. My mom was still upset but once she saw what they can do for her, and experienced it....she was accepting.

Now, with that said, I will admit that I wondered and still sometimes wonder, if I may have hastended my mom's death by bringing Hospice in when I did. Did I cause her to give up too soon? Only God knows and I decided to stop beating myself up and accepted that I am human and made the best decisions I could make given the circumstances. We have to allow our loved ones to make decisions but we have to be their advocates too and ensure they are comfortable.

My mom's cancer was in her lungs, metastasized to her brain, adrenals, and bone. The adrenal cancer is what caused her discomfort in her stomach and made her feel like she was constipated all the time.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1302

Trey,

Well, you've pointed out some things that I didn't want to mention and Tera has given you a lot of good information.

I'd suggest a sit-down with your Mom ASAP. She needs to agree to at least have someone call or stop by every day to check on her well being. Not to overrule her wishes, just to assure her safety. She needs to know her children are worried about this issue and can be a little more flexible in this one area.

Please let us know how this works out. This is worrisome.

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

trey

I agree an intervention is in order. Thank you - it is so comforting to know others that have had similar situations.

I will ask the caregiver to go by - and I am planning on going by there no later than Tuesday. It's weird as I saw her Friday, Saturday, and Monday and she was great. She had an old college friend come for a few days (she never has company!!) which was wonderful, and I know it totally wore her out so this "I want some quiet time" is not that unexpected. She asked me to send her some 'end of life' books - the lecturer and a few others - which I did. If she is reading those then I'm sure thats adding fuel to this. It's just my sister saying she sounded "different" .............that has me concerned.

Update: my sister mentioned today (not sure why not last night) that the reason mom thinks she has a sinus infection is because shortly after she went in the water (she lives at the beach) she got a stabbing pain behind her eye. And she thinks it has to do with something in the ocean, red tide, etc. The ocean however is just fine.

Brain mets is certainly possible. Anyone have any ideas about what specifically could cause this pain? Tumor on a nerve perhaps? In addition to headache, what else should I be looking for? Her eyesight is bad because of cataracts (spell?), so that is not a good threshold test but any other symptoms? Balance seems okay...

No adrenal glands mentioned on PET results. What is mentioned is:
lymph nodes (mediastinal and left supraclavicular), extensive pleural metastases, 4 hepatic metastases, probable retroperitoneal lymph node mets, and multiple skeletal mets (ribs). PET taken on 4/22/08.

I'll start the intervention process..... but I'm going to get yelled at Rolling Eyes

Tera you bet it IS a fine line!!! Thank you for understanding!!
_________________
love & pixie dust to all...

Mom diagnosed w/NSCLC adenocarcinoma stage IV at age 66, declined chemo or radiation.

trey

Good news! Apparently the intervention I need to have is with my sister for relaying misinformation.... Mad

I spoke with the caregiver who was there yesterday and today. Mom's eye was very red and watery yesterday and painful causing the headache. She took Benadryl and rinsed it well with saline. Eye is fine today.

Caregiver will go back tomorrow to check on her. Mom is eating, drinking, using her oxygen, and is just very tired. Mom just wants to rest and not have phone calls or visitors. Breathing better today too!

Just spoke with mom and all is well - she even assisted another mom who was stabbed by a sting ray yesterday until the paramedics came.

Now to deal with my sister!!!!! Thank you all....
_________________
love & pixie dust to all...

Mom diagnosed w/NSCLC adenocarcinoma stage IV at age 66, declined chemo or radiation.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1302

Trey,

Well, that was far better than you were dreading. Whew! You had me going a bit there too. Glad to hear that it's a matter of better communication. I love good news! Thanks for letting us know.

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

trey

Thanks again everyone! Smile

We had a few days where mom was really confused and saying things that didn't make any sense, and of course I got really really worried. But when I spoke to her yesterday she was totally there. She has maintained a very 'up' mood - so far so good. She says she feels much better than last week.

this site is a true blessing. Just knowing that I'm not the only one has been such a comfort.
_________________
love & pixie dust to all...

Mom diagnosed w/NSCLC adenocarcinoma stage IV at age 66, declined chemo or radiation.

trey

Got the call today. Never got a chance to say good-bye. Came over to spend a week at the beach with my in-laws as well as Mom. As we were unloading the groceries in the condo, got the call. Rushed over there. Care giver found her on the kitchen floor. Sad

Yesterday was a really good day for her, the care giver said. Mom got her hair done, nails done. Went to the doctor because of SOB. Now I found out that the doctor ordered a chest xray STAT, and wanted her to go straight to the radiology section of the hospital for it. Lots of fluid in the lungs. Doctor also ordered a nebulizer. (Her regular doctor was out of the office, this was her assistant. I think I would have received a phone call about this if she had seen her regular doctor).

She told the doctor she would go, but then got in the car and mentioned it was Friday afternoon.... blah blah... would deal with it on Monday. Care giver left at 5pm. Of course I find this out after the fact. All fine with Mom at 5 pm. Looks like sometime last night or early this am she went to the kitchen to get a drink and fell. That was it. My best guess is her lung collapsed and she was gone. I am thankful she did not linger. Both of her parents (my grandparents) lingered for years and Mom and I had long discussions about how she did not want that to happen for her.

I know she is in a much better place. Just wish I had been able to say good-bye. She was diagnosed around July 26 '07 as a Stage I. Died today. Wow this disease is fast. The paramedics who were consoling me told me one of their cheifs just passed away from lung cancer - diagnosis to death was only 6 months.

Mom was a smoker but quit several years ago. She did mention before she died that she never should have stopped smoking or drinking. Smoking just annoyed me before this, now of course I think it is the devil.

Weird thing though. I'm not one at all for quotes/silly mass email to friends etc. But late last night I came across this quote (see below) and mass emailed it to my friends because I thought it was SO great. It really sums up my mom's outlook on life and I was planning on sharing the quote with her this week - never got to. Unknown to me until this evening, I came across it about the exact same time she passed away. I just wonder if it was her way of saying its all going to be ok? Anyway here it is:

"Life should not be a journey to the grave with the intention of arriving
safely in an attractive and well preserved body, but rather to skid in
sideways, chocolate in one hand, martini in the other, body thoroughly used up, totally worn out and screaming 'WOO HOO. what a ride!"

I think I will use it at the funeral.

Wink

_________________
love & pixie dust to all...

Mom diagnosed w/NSCLC adenocarcinoma stage IV at age 66, declined chemo or radiation.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1302

Dear Trey,

I'm so sorry to hear of the sudden loss of your Mom. She passed as she lived, fiercely independent. I know how much you wanted to see her one more time and I hope you can work through this in time. It must be of some comfort that she had a great day yesterday. That is a blessing because some people, as you have mentioned, do linger and suffer with cancer.

I love your quote and think it would be a wonderful to read it in honor of the strong woman who you knew as Mom.

God bless you and hold you close during the upcoming time. We'll be here for the next part of your personal journey.

Hugs,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

Vee Smith · Moderator Joined: 12 Feb 2006 Posts: 796 Location: UK

Hi - just to say how sorry I am, but that for her to go quickly, in her own home and her own time, is what we all dream of.

Your quote is wonderful. Thank you.

LizNDale · Posted: Sun Jun 15, 2008 9:59 pm Post subject: Your Mom

Hi Trey,

Needed to say how sorry I am for your loss, and for how sudden it was.

I love your quote, do you know where it is from?

God Bless your mom, you and family,

Sincerely, Liz
_________________
My Mother - Stage IV NSCLC - Adenocarcinoma
Mets to Adrenal Glands and Brain
Diagnosed Thursday June 12th 2008
Died Sunday September 7th 2008

Her Story:
http://cancerforums.net/about9639.html
Her Statement of Faith Memorial:
http://cancerforums.net/viewtopic.php?t=10528

Tera · Senior User Joined: 31 Dec 2007 Posts: 187

Oh Trey, I am so sorry. I know you are hurting now. I can also identify with thw swiftness of the disease progression....my mom died five weeks after her diagnosis.

I will say that I ama STRONG believer in messages from our loved ones and I would have definitely taken that quote as a message from my mom if it were me. Especially seeing as how it happened.....the same time she passed; sums up her personality and you can just hear her saying it; the fact that you don't pass those messages on but 'something' moved you to do so. Something did.....it was a gentle nudge from your mom. Hugs to you.

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