Overmedicated and not recovering...

[tjrasMOM]

Where do I start?....

The last few days have been probably the most difficult, emotionally exhausting, scariest days since Mom's original diagnosis. Her condition has gotten progressively worse each day. Her mental state has been that of pure confusion, dementia and more recently, hallucinations and dysphoria. Because of the extremity of her state of mind, yesterday I called both doctors. (oncologist) and (pulmonary specialist / Primary Care Physician). (Pulmonary has ALWAYS been the one who reminds her that she's terminal and that she has, at best, 3 years with treatment. He NEVER fails to remind her....in case she forgets.) Oncologist is a ray of sunshine. Always hopeful and who LOVES Mom's spirit and energy.

In the past 2 days Mom has had extreme dementia / alzheimers type symptoms, including but not limited to, hallucinations, dysphoria, inability to form words or speak. Last Sunday I found her sitting on her bedroom floor, unable to stand, unable to talk. I would ask if she was ok, she would say that her Grandma and Grandpa were in the room and needed her to do something.....she would drift off in midsentence. When I'd try to help her up, she fall. When we'd leave the room, she'd continue talking to whomever she thought was there.

My mom's 2 sisters, myself and newly hired help - a retired RN who lives next door, are all rotating days as we try to care for her. As her symptoms became worse, we needed answers. I started making calls to her two doctors. Her oncologist was concerned. He said that what I was describing was not normal radiation side effects and that we needed another MRI. He explained that it could be a few things going on....and each "thing" is going to require completely different treatment. Possibilities: 1) Swelling of the brain due to water retention, which requires steroids again. (But we hate to do this because the steroids were causing muscle loss in her legs, pain and nausea). 2) More tumor growth or 3) She's over medicated.

I asked him about her pain pills because I knew they were stronger than the Vicadin. That's all I knew. I hadn't done my research on the specific drug. *(Now, I wish I had). For those of you who know drugs, she was on 4mg of Hydromorphone. It's the strongest narcotic a hospital is allowed to legally give a patient. Stronger than Moriphene. It is an opiat and can result in hallucinagenic side effects. It is used for long term pain control, but does have serious risks. Now we know.

Oncologist told me to take her to ER, to call her Pulmonary Dr. and to NOT give her any more pain pills just in case she was overdosing. (Well, WE would be the ones overdosing her because we were simply following the prescription).

My conversation with her Pulmonary Dr. went somewhat differently. I spoke to him about an hour after I spoke to Oncologist. Basically this is what he said to me:

"Hi Tova.....So, what you're describing sounds like the cancer is progressing. Yeah, I'd say the cancer in her brain has spread and the tumor is taking over. Ya know, this was stage IV and SHE'S HAD A GOOD RUN. It's the end and time for you to make hospice arrangements. Get to the ER. I'll check on her tomorrow. And you can let me know what you want to do at this point."

"She's had a good run"? Are you kidding me? THIS is how professional people in our medical field deliver news of a loved one coming to the end of their life? Not to mention, that this same doctor did not have ONE scan or test result in front of him while he told me my mother was at the last stage of her life. She just had an MRI in August that showed the radiation was killing all the tumors. So, in that time, you're telling me it's taken over her brain?

He scared me, more than I can put into words. Our family's emotions were all over the place. This was the worst thing we could've been told at this point.

The bottom line is that we know she was diagnosed at stage IV. We know that she has a cancer that can not be cured. But until you have facts in your hands, do NOT tell me this is the end. I am not in denial. Nor is her family. But don't take away our hope. Don't take away Mom's spirit and hope that she still has some quality life left until you know for sure. My mom is a warrior queen. She has been from day 1. But her Pulmonary has written her off from day one. Even though she keeps shocking him with her strength. I know she's getting weaker. I know there is something going on here, but I am NOT ready for hospice and neither is she.

We (Mom's 2 sisters and I) took her to the ER Monday night. She got a CT scan, chest x-ray and an MRI. As the evening went on, Mom started to make sense. She was still groggy and some things were out of context and did not make sense, but she started to ask what was happening, why she was in the hospital, etc. The hardest part was seeing the fear in her. She saw the tear stained faces on US and the fear in OUR eyes, so as she was becoming mentally clearer, she started to get scared and think this was it. We all continued to tell her the truth....we told her everything that had happened in the past 2 weeks. That she had been confused and it got worse. That we had brought her in because we were concerned. She asked me at one point, "Tova, you would tell me the truth, right? You would tell me if there was something serious?"

Throughout the night she also told me that she was scared and that this was the hardest part. That she had no idea how to say goodbye to all the people she loved. There were tears rolling down her cheeks while she said this. As much as it hurt to see her like this, you have to understand that my hopes were coming back because she was talking in complete, coherent sentences at this point. Something she hadn't done in 2 weeks. I cried with her, told that this was not the end. That she was obviously coming out of this drug induced mental state. But inside I knew that her clarity was GOOD NEWS!

She was release Thursday and is comfortable in her own bed. Her oncologist and I have talked a few times. He is LIVID with her pulmonary dr. And said he wants to chance Primary Care doctors. He said to me,

"this is NOT the end!" And that he is tired of her pulmonary dr. "being the grim reaper". He said that he has tried to give Mom the best quality of life in the past 2 years and that she is a fighter, and we've seen what she is capable of time and time again. He added that the way in which the pulmonary doctor spoke to me was "Nonsense...just plain nonsense!"

I explained to him that I know she can't fight this forever, and I'm not in denial. But until HE tells me that he has seen her MRI, I am NOT ready to listen to that depressing pulmonary dr. anymore.

As her oncologist released her from the hospital, he changed the pulmonary's orders for hospice, to "Home Aid Health Nursing Care". He said that they would come in, make sure Mom's medications are being taken correctly, make sure she is getting everything she needs, and basically be the liaison between the oncologist and the patient so that she wouldn't need to come in everytime he wanted to know how she was doing.

Today I picked up a walker at a garage sale for $5 and this afternoon we're lowering Mom's full-size bed to make it easier for her to get down. She's complaining of stomach pain, sleeps 23 hours a day, and is very shaky and frail.

I honestly don't know what to expect. I don't know if I'm about to find out that we're nearing the end...or if this another very steep obstacle. I just don't know. All I know is that Mom and I have always been very close, but in the past 29 months, we've have become best friends. She is everything to me. Throughout my life, she's always been my rock. She always been there for me. She has sacrificed so much in her life for me. My moods swing between chronic depression, hope, sadness, self pity, anger, denial.......I just don't know what emotion to hang my hat on right now.

[RandyW]

The sleeping is probably because of the pain meds !! I am so sorry you are going through this right now.. I am glad that Your Oncologist wants to kick your PCP 's butt around the block !!!

My thoughts and Prayers for You and Mom and the whole Family right now!!

[lilyjohn]

I know exactly what you are saying. Having said that I will tell you what I was told every time I questioned the drugs that Johnny was taking. The reason he was taking the Vicodin was not for pain. He was taking it because his oncologist refused to give him anything for panic and anxiety attacks. Why because it wasn't HIS idea. That was what it boiled down to.

Because of him and the treatment or lack of treatment that Johnny recieved I have grown to question everything a doctor does or does't do. Never take it for granted that they are never going to do something harmful to the patient. The majority won't but there are always the one or the few who let their own ego become more important than the patient. Ask questions and get answers. If that one won't give you what you need find one who will. Life is too important to trust to someone who does not have your interest at heart. It is too important to trust to someone who has written a person off just because they have lung cancer.

When I questioned that they were giving Johnny the Vicodin for other than pain and told them that he was addicted to it and all of the problems that was causing the answer I always got was "what difference does it make? He has lung cancer" I even had the pharmacist at the State Medical Board in Washington state tell me that once a person was diagnosed with lung cancer all precautions no longer pertained.

It all boils down to that same old thing. People are so afraid of lung cancer that they try to keep a distance until it hits too close to home. Because of that there is a lack of research and a lack of funding. It is so much easier to blame it all on smoking. That keeps those who don't smoke with a false sense of security and gives doctors the idea that it is the right thing to do to take hope away.

It all stinks but until we find a way to break through that wall things like what happened to my Johnny, your mom and so many more will continue.

[tjrasMOM]

You are so right about the ignorance surrounding lung cancer. People are so afraid of it and I'm so tired of the stigma attached to it. I do love Mom's oncologist though because he will not give up. Maybe it's because he's younger, I don't know. Maybe it's because he is so aware of new treatments, research, etc. But he's awesome. But the fact that lung cancer patients are treated this way is why we have started working on the volunteer committee of the Bonnie J. Addario Lung Cancer foundation. She has created a subdivision of her foundation that is gathering oncologists from around the globe to participate in a study regarding stage IV lung cancer. Up to this point, stage IV has never been studied. Doctors used to just send patients home to die. And did you know that they throw all tissue away when they remove lung cancer tumors? It's not sent to labs to be studied. We need to study this tissue to better understand the disease.

Regardless of statistics, we're finding that some cases can defy the odds. But more research needs to be done to find out the genetic make up of lung cancer. Mom and I attended a volunteer meeting with Bonnie, her daughters, BJALCF staff, survivors and doctors last month. We were so moved and inspired when we attended her annual 5K walk this summer in SF, that we went up and met Bonnie herself at the event. Now, just 3 months later, Bonnie and I keep in touch through email because she and Mom bonded. =)

Bonnie is putting lung cancer on the playing field. None of her funds raised pay her staff...she and her husband pay the salaries. 100% of money donated goes into lung cancer research. She wants to make strides the same way that the Susan G. Komen has for breast cancer. But the first thing that needs to be done is to get rid of the stigma and EDUCATE people about the disease. Did you know that lung cancer kills more women annually than breast cancer? Everyone thinks breast cancer is the leading cancer for women, but it's not. WHY? Because foundations like Susan G. Komen started fighting back and informing people. Money started being raised and medications improved, treatments improved, etc. There is now a higher survival rate for breast cancer patients because of it! If people knew these numbers, then maybe we could get more funding into lung cancer research.

My mom and I were so ready to participate. Now that Mom is not feeling well, instead of sending us emails about upcoming events from her web site, I get personal, touching emails from Bonnie herself...supporting my mom and suggesting what I should be asking doctors, what I should be feeding Mom, etc. She's been amazing.

If you want to check out the web site:

http://www.lungcancerfoundation.org/

[recce101]

Tova, there's one other aspect to the overmedication possibilities, which happened to my mother-in-law around 1997. She had a hip replacement, was on a narcotic pain pill which also contained acetaminophen (Tylenol), and unknown to us was supplementing that with regular over-the-counter Tylenol. This messed up her liver and enzymes big time, which gave her major dementia very much as you described. A sharp young doctor doing his residency training figured this out, and after a long haul of several months her mental capabilities returned to normal. She passed away this June at the age of 94.

Ned

[jaminkw]

Tova, I had personal experience with a pulmonologist/surgeon that triggered me bursting into tears. That's not a common occurrence for me but his response was so shocking and scary....At least he then showed some humanity and rushed to try and fix his blunder. This guy you describe appears not to have any empathy for people at all. Stick with that onc and avoid the pulm like the plague if you can. Sounds like you have a plan in place now and I hope your Mom regains her strength soon. I'm so sorry you, your Mom and family are having to go through this.

Thank you for your last post. I've been listening to the constant press on breast cancer and have thought I should do something in November for lung cancer education/awareness. I'm not sure I have the energy for it yet and certainly not enough to do the research needed to make intelligent responses. I'll check out the link you offered.

Judy in Key West

[tjrasMOM]

Judy, I'm so sorry you too have experienced people who just don't think before they speak. You are right, Mom's pulm has absolutely NO EMPATHY. I don't know if he ever did. You want to know the crazy thing? We live in a somewhat small suburb area, just 20 min from SF. People know each other around here. Plus, Mom was raised here. She raised me here until the 5th grade and then moved us to Oakland. When I got married I moved back to this town and when she was diagnosed, she moved back in with her dad (who is now 96). So, my mom and 96-year-old grandpa live just 5 blocks away.

But my point is that people talk and you will always run into to people who go to the same doctor, dentist, etc. Because we have a hospital here in town, many people have the same doctors. So, this pulmonary doctor is known. I've run into people who say, "Oh he's a very good doctor.....very knowledgeable." OK, yah fine. But how's his bedside manner? He's one of those people who just look at the ground when they're talking to you or look past you over your shoulder and just babble about a ton of useless information. I took Mom in for her flu shot a few weeks ago & while we were there I think I learned the entire history of the flu, vaccines, other strains we've been exposed to....and then he just goes on to a new subject like AIDS without even pausing for a breath. And we got the whole history of that.....He's a walking encyclopedia. Filled with facts and figures. But he views the world from a statistical point of view. Mom was always a statistic to him. Just a matter of fact....with no personal connection.

That's fine if you're on a medical research team, but not if you are dealing with terminal patients.

[tjrasMOM]

I forgot to ask Ned...was there anything they needed to do to clean out your MIL's system from the drug interaction? Or did they just let it happen over time?

[tjrasMOM]

Ned,

On another subject....How do you get 2 pictures up? I love this new picture I just took of my mom cuddling her great-nephew, but I'd love to keep one of us up also.

Thanks

~Tova

[recce101]

"tjrasMOM" I forgot to ask Ned...was there anything they needed to do to clean out your MIL's system from the drug interaction? Or did they just let it happen over time?

The first thing was to make sure she didn't take Tylenol or any pain pills containing Tylenol. The second was to make sure she was getting adequate nourishment.

I asked my wife about the ordeal this morning and she straightened me out on the sequence of events. The initial problem was caused by compression fractures (she had severe osteoporosis) and she was still at home with us when the overmedicating occurred, supplementing the prescribed medications with OTC Tylenol. When the dementia became really bad she was hospitalized and was well on her way to being diagnosed with Alzheimer's when the young resident doc figured out what was happening. She was then moved down the hall to the long-term care facility and stayed there for 7 months, until she could feed herself and partially take care of her other needs. At that time we were fully engaged caring for my father-in-law, who passed away that same year. By the time the hip surgery became necessary, she was basically in control of her faculties and with careful monitoring of medication there was no further dementia. The past 10 years, until she passed away this June from pneumonia, her mental capacity was fine and with extreme care she was able to avoid having any more bone injuries.

On another subject....How do you get 2 pictures up? I love this new picture I just took of my mom cuddling her great-nephew, but I'd love to keep one of us up also.

You can put the second one in your profile as I've done, but it needs to be stored somewhere on the Web where it's accessible. If you don't subscribe to one of the photo hosting services, you can email me the second photo, which I can resize as necessary and post on my website, then give you the code to insert in your profile. I'll send you a PM with my email address.

Ned

[fighting4mom]

Tova,

i've just been catching up on your roller coaster of the past few weeks and am saying prayers for your Mom. I think you described what role you Mom's pulm should play perfectly -- he should be in reserach and not an actual practitioner (no slight to Cat127 here on the board!)

hopefully this rx induced fog will clear, her strength will return and the actual test will now show anything more alarming.

my prayers and hugs to you,

kimberly

[KatieB]

I've been following too and I'm glad your mom is home. Good for you for being such an advocate for your mom. I was just livid, and frightened and so scared for you. We experienced a lot of the same attitudes when my dad was in the hospital- so I remember how frustrating and scary and surreal that was.

I really applaud BJALCF efforts as well as those efforts by the other members of "LCAN" network of LC groups,

I also wanted to give big Kudos to this one- LUNGevity Foundation- and to so many of us here and across the nation doing such great things to raise awarness and funds for LC. LUNGevity was founded by LC survivors and the President is also a survivor. They don't staff with donation dollars, they are a 5-star charity rating for sound fiscal management and all donation dollars are doubled for lung cancer research. We are doing great things here too. Here's to making steps against this dreadful disease!!

My prayers continue for your mom. She is so lucky to have all of you there with here and for her right now. Take it a moment at a time and don't forget 1) to breathe and 2) we are all here for you!

Hugs

[tjrasMOM]

Bonnie (from Bonnie J Addario Lung Cancer Foundation) works very closely with LUNGevity! LUNGevity had a booth set up at her walk in SF this summer. I wear a LUNGevity bracelet all the time now. Bonnie has nothing but AMAZING things to say about LUNGevity! These 2 organizations are making such strides for lung cancer. =)

[michellep]

That is just OUTSTANDING news! We'll just finally find something perhaps to help?