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Mom - opting out of treatment 
Started by TrueHeart
27 Sep 2012, 3:38 PM

When my mother processed the fact that she has brain cancer, she decided she didn't want to do a biopsy, radiation or chemo therapy.
We all respect her wish to die a natural death. The neurologists, neurosurgeons and the team of doctors from the cancer clinic offered us no support or advice as soon as she expressed her wish to them. Some responded by saying only that she would have to sign documents saying she refused treatment; others made her feel stupid for her decision - while others tried to "push" treatment.
As her primary caregiver, I have done research to understand her condition, secure in home health care and to keep her as comfortable as possible.
There is very little information about caring for someone with her condition who has opted out of treatment.
Initially, she was misdiagnosed with a stroke back in May. After 3 visits to the emergency room and 3 admittances to expidite testing, by the end of July we were told she had several malignant tumors on the right side of her brain.
The journey thus far has been a roller coaster of symptoms. Good days and bad days.
About 3 weeks ago, she started having difficulty breathing. X-rays showed nothing. Her family doctor is the only doctor she is comfortable with, because she respects my mom's wishes to die naturally. No subsequent testing has been ordered, and I can only suspect that the tumors are spreading and affecting her breathing...now, her left foot/ankle is swollen.
She is on dexamethason 4mg, dilantin 400mg and takes a sleeping pill at night/ Ativan for anxiety and recently we added tylenol 2 for pains that she experienced last week in her back and under her rib cage....caused by what?? we don't know.
We don't know if she has days, weeks or months to live. No one has given us any kind of timeline whatsoever.
Her struggle to breathe is very worrisome at the moment.
We have a doc appointment later today....
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Reply by moderator | modératrice
27 Sep 2012, 5:49 PM

Hi TrueHeart,
I'm so glad that you found us. There are a couple of other Virtual Hospice members that cared for a family member who decided to opt out of treatment. I will contact them and ask them to share their experiences with you. 

In the meantime, I wanted to write to encourage you to get answers from the care team at your appointment today. They will likely not be able to give you a timeline, but I would hope they could help paint a picture of what you can expect so that you can be prepared. I would suspect you would like to know this so that you can keep your mother comfortable, know what to do when you have questions or concerns, and to prepare yourself and others around you emotionally.

I wish you the best of luck with your appointment today. Please write back to let us know how it went. 
Thinking of you today.
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Reply by Brayden
27 Sep 2012, 9:37 PM

I can not really add to what Colleen suggested as your primary problem needs to be addressed by professional medical folks. I hope you get some of that at your meeting today. I can just hear the pain in your message in that not only does your mother have brain tumors but even more so, not to get the cooperation that you would expect from Doctors. That really makes being a caregiver more challenging than is necessary. I hope we get further details from you and that you find just talking it out with others may help.
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Reply by TrueHeart
28 Sep 2012, 1:14 AM

Thank you Brayden and Colleen for your responses.

The doctor suspects a blood clot. We are heading to (yet another) hospital for an ultra sound first thing in the morning.

This week, she has frequently been referring to wanting this to be over and making off-handed comments about the end.

Last week she was frustrated and sad, and frequently crying very suddenly.      
On the weekend, she had a cathartic moment with two of her grand-daughters. They hugged and cried and laughed together on her bed. It seemed to take her from depression to acceptance.  

She started complaining of intense fatigue late last fall. Around Christmas, she began to experience sharp dramatic changes in her vision. Upon examination, she was told she had wet age related macular degeneration. By February, we were going to an opthamologist for intraocular injections of lucentis. Twelve treatments were recommended. We got through 4. In May she was rushed to hospital and diagnosed with a stroke. Yet, she had no risk factors and no visual residual effects. Admitted overnight for obseravation. Testing, testing, testing, appointments, appointments, appointments. In June, back to emergency with another "stroke".   More testing, testing, testing.....but no MRI or Contrast Cat Scans. Hmmm - one doctor says - it sounds more like a seizure. Testing - no evidence, but a mass that they originally diagnosed as a stroke was still visible on the regular Cat Scan. July, two seizures 4 days apart and back to emergency. Finally, one doctor says - ok, enough of that. This is not a stroke patient, there are no risk factors - she orders a contrast Cat Scan - and off we go - transfered to a neuroscience speciality hospital. More testing. Finally, someone orders an MRI.

The MRI is conclusive and shows a tumor with spider connections and sprouting up into 4 other sattelite tumors - two dangerously close to the midbrain. More testing - now to see if this is primary or secondary. A week in the hospital. A conclusive diagnosis of malignancy and deemed inoperable and incurable.

She always lived a healthy lifestyle. Ate healthy, didn't smoke, drank on social occasions only, exercized regularly, had an active and joyful social life, a loving family and a fulfilling retirement.  She is a woman with dignity, class and grace.

We are fortunate in many ways - she isn't in any constant pain - only occasional and manageable - she isn't bedridden and hasn't suffered any significant headaches. She has nausea, some confusion, some memory lapses, there are slight changes in personality from time to time, she is very unsteady, her vision has declined and her body isn't in her total control, especially her left side. She is exhausted most of the time and unable to care for herself and her basic needs.

One neurologist said he felt 90% certain that is it primary lymphoma - and most of her symptoms do correlate with the research I have done.

Thanks for listening - it felt really good to put all that down like that.

Peace and Love     
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Reply by moderator | modératrice
28 Sep 2012, 2:00 AM

Hi TrueHeart,
It's astounding how helpful just writing things down can be. You and your mother really have been through so much.

At your appointment today, did you get some of your questions about what to expect answered?
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Reply by TrueHeart
28 Sep 2012, 8:40 PM

The day started out very dramatic. Mom had a fall in the bathroom early this morning. She had to use Lifeline.
Then, off we went for a day of tests - lung scan and an ultra sound on her swollen leg. Then we met with a really nice doctor, who explained that there were clots in both her lungs and 50% of her left leg. The lung scan was crazy - she had to breathe and fill her lungs with a radioactive mist; then, they injected her with something radioactive that looked like mercury. Eeps!
So, we are adding a daily injection of blood thinners to her meds now. Ideally, she will be in less pain, and be able to breathe without pain and exhaustion.
She explained the risks of a "bleed" - which we feel is a better option over the pain, difficulty breathing and constant exhaustion. Either way, the blood clot could take her too - but more slowly and more painfully. A bleed, on the other hand, would be quick and likely only short term pain.
Running out now to pick up the script.
The timeline is sketchy at best.

Quality over quantity is our main objective now.

Peace and Love
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Reply by Brayden
29 Sep 2012, 2:35 AM

Dear Trueheart,
Thank-you so much for responding so quickly when we know that your time is precious.
So good to hear that you received a little  clearer picture of what is going on with your Mom. Your plate seems to be so full right now so I hope that you have other family members or close friends that can give you some respite. You should not try to go it alone as it will drain you physically and emotionally faster than you may think. I am sure your Mom would like to give back some of the same love that you are passing on to her every day. You are in our thoughts and prayers. Lets keep in touch.
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Reply by TrueHeart
30 Sep 2012, 1:44 PM

Thank you Brayden.

In fact, we are teaming together as a family. Taking turns spending the night since Friday. I'm with mom Mon-Fri all day and occasional saturdays/sundays. On the weekends, my siblings are not working and my sister and her daughters are very helpful and it gives me some down time.
Mom and Dad are separated, but on excellent terms. He has offered to spend 3-4 evenings a week spending the night at her place.

In fact, there is a precious little story here. When we returned from the hospital, I put mom down for a much needed rest while I went out to pick up the prescription and a few grocery items for her. When I returned, she admitted (for the first time since this all began) that she was now afraid to spend the nights alone. She has always been a fiercely independent woman and has lived on her own for 25 years. She worries about me doing "too much" and didn't want to ask me to also spend the nights and mused at perhaps asking my dad to do that instead. She joked about "no hanky panky"! *smile* Then, within 3 minutes, the phone rings and it is my dad. He called to offer to spend the night with her! Ha. When she got off the phone, I said "Gee mom, you and dad have this wild telepathic connection!"    

She has had only two injections of the anti-clotting treatment and already feels much better. Her pain levels are significantly lower and her energy has increased. 

She is heading out today with my sister. 

Of course, we all know this is temporary - the entire journey has been a roller coaster. And, naturally, we are all aware that the anti-cogulant treatment carries serious risk in her condition. For now however, it has given her relief. Every day that we can improve her quality of life is a treasure at this juncture.
At one of our visits to a neurosurgeon, we picked up a handbook from the brain tumor foundation. The booklet describes 20 possible negative side effects just for the biopsy, not to mention the radiation and chemo risks and side effects. All of which, we were told at the beginning, might afford her a mere additional 6 months of life. The sad irony here is that not a single specialist even mentioned the Brain Tumor Foundation to us at any time.
Mom is 77 and very pleased with the life she has lived. Of course, she would prefer not to be terminal, but she is very lucid, stoic and pragmatic - and stubborn!   She wants to die at home; doesn't want to be hospitalized and doesn't want to live the rest of her limited life in a chemo state. 
Today, we are all grateful for a good day! Smile 
Peace and Love  

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Reply by Diana2012
01 Oct 2012, 1:37 PM

Hi TrueHeart,

Thanks for sharing your story.  You must feel so relieved to be able to come here and tell your story and share your feelings....I know I did when I was going through a similar experience to yours. 

2 years ago my mother-in-law was diagnosed with colon cancer and over time it spread to her liver and lungs, which was terminal.  She spent most of her 2 years doing various treatments, both natural and medical treatments including chemo.  Her last 6 months on chemo were rough as she felt extrememly sick and weak all the time.  The doctor's stopped treating her with chemo for the last4 months of her life.  We were all devestated and couldn't beleive that there was no help for her out there. 

Like you, I did so much research trying to find out how long my MIL had to live, what she would go through, what the family would go through, etc.  It was a devestating time.  When my MIL found out that the chemo wasn't working, she gave up and didn't want to try any alternative medicine and became extremely depressed.  I couldn't understand why chemo wasn't working and why my MIL didn't want to try anything else.   I tried my best to get second opinions from various doctor's in Canada and in the States.  I wanted my MIL to talk to someone about her depression and I wanted the family to talk to someone about what they were going through, but both my MIL and family refused.

Like you I wanted to know how long my MIL had to live, but no one gave us an answer.  The doctor's will never tell you a timeline b/c every patient is different.  Even when my MIL was in palliative care, her doctor wan't able to accurately tell us a time, he would laways say take it one day at a time...and that's what we did and this is what you have to do with your mom.  Take it one day at a time, enjoy the time you have with your mom and cherish every moment.  

Opting out of tretment might be a good idea for your mom, b/c seeing what my MIL went through on chemo was horrible.  She spent most of the alst 2 years of her life sick.   You mentioned that your mom's doctors made her feel stupid about opting out of treatment, this is terrible, but in my experience I found this was how it was.  The medical doctor wasn't to keen on the idea of my MIL trying natural meds, he even went as far as to tell my MIL that the chemo didn't work b/c she was treating the cancer naturally.

You can find great resources online about cancer and/or brain tumors.     You are lucky that you have your family to lean on and this is all you can do right now.  Share your feelings with your family.  This website has great information about grief and support. 

Just wondering, has your mom ever had a second opinion?

Take care,

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Reply by TrueHeart
01 Oct 2012, 2:09 PM

Hi Diana

Thank you for your response. Your story is very sad indeed. Once treatment is no longer an option, whether by personal choice or a medical decision, you really do feel an isolation. 
Earlier this summer, my dearest friend was diagnosed with stomach cancer. She died on August 31. Her story is devastating. In May, she suffered a bile duct infection and upon an ultra sound examination, they found a tumor in her stomach. They did a biopsy later that month, but didn't tell her that she was terminal/stage 4. Didn't tell her to put her things in order. In fact, they told her there was no urgency and convinced her to get surgery. When they opened her up, they closed her right back up - but not before cutting into her stomach to get another biopsy. She was confined to her bed after surgery and never recovered, never became strong enough for chemo. Her daughter tried many alternative approaches, and managed pain with morphine patches. It wasn't until about 3 weeks before her death that they told her daughter that she was terminal.
Because of my mom's condition, I was never able to go to her (she lived 3,000 miles away), or say goodbye. I haven't had the heart to tell my mom that my best friend didn't make it; so I haven't had much of a chance to grieve her death. I was able to send a letter to her that was read at her funeral and the afternoon of her funeral, I spent in prayer and meditation. I also sent flowers.      Throughout her illness, I called her frequently (almost daily) and we cried on the phone. The last time I spoke with her was about 10 days before her death, and she was incoherent and difficult to understand. I stay in touch with her daughter, who is like a niece to me - but everytime I dial her number, it sends a pain through my whole soul.
 It has been a month since her death.
Now, to face my mother's imminent death too, is hard to say the least.
We did get several opinions for my mom. The third visit to emergency, the doctor told my siblings that my mom had tumor. They asked if it was malignant or bening - the doctor's first response was that it didn't look bening. Then, when admitted for testing, more opinions started to surface. The first one - malignant, inoperable, terminal. The 2nd one, the neurosurgeon said he could go in there, get a biopsy, resection one of the tumors - but she would likely have a stroke. He also said that treatment would only give her 6 months at best. The 3rd one - 90% certainty of primary lymphoma, incurable, surgery not advised. However, without a biopsy, we we will never know for certain what kind of cancer it is. The cancer clinic also suggested a GBM - in which case, chemo is often a hit and miss, because there are often several type of cancer cells involved - some which respond to chemo and some that don't respond and could be aggravated by treatment.

I am finding it very liberating to relate mom's experience here with all of you. Thank you for your responses and compassion.
Bright Blessings     
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